[Senate Hearing 118-]
[From the U.S. Government Publishing Office]
DEPARTMENT OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND
RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2023
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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 America's Public Television Stations
and the Public Broadcasting Service
On behalf of America's 160 public television licensees,
collectively operating 336 public television stations serving nearly 97
percent of the American people, 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
$565 million in 2-year advance funding for the Corporation for Public
Broadcasting (CPB) in FY 2025, $60 million for the Public Broadcasting
Interconnection System in FY 2023 and $30.5 million for the Ready To
Learn program at the Department of Education in FY 2023.
corporation for public broadcasting:
$565 million (fy 2025) 2-year advance funded
Public television plays a key role in educating our children;
providing job training; preserving our diverse, dynamic culture and
democracy; and keeping Americans informed, safe and healthy. Public
television's essential services have been critical during the COVID-19
pandemic, as local public television stations in all 50 States have
provided enhanced educational services and content to help support
students, families, teachers, and schools throughout this challenging
time.
Federal funding for CPB, which enjoys the overwhelming support of
the American people, is essential to making these services available to
all Americans, including those in rural and underserved areas. 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 a decade--resulting in an approximate $100 million in lost
purchasing power.
Recognizing this loss, we appreciate that Congress has increased
the forward funded CPB appropriation in each of the last 3 years.
While public broadcasting is grateful for these increases, the FY
2024 enacted funding level of $525 million still leaves the public
broadcasting system about $55 million, in inflation-adjusted dollars,
behind where the system was 11 years ago. This shortfall continues to
present a serious challenge at a time when the system is bearing the
costly expense of providing access to content on ever-emerging
platforms and stations continue to offer more and more essential
services to their communities.
In addition, local stations are facing a growing backlog of over
$300 million worth of infrastructure improvements we need but cannot
afford to fund since the Public Telecommunications Facilities Program
(PTFP) was defunded in FY 2011. The longer these improvements are not
addressed, the more they threaten local stations' reliable broadcast
services and public service missions.
At the same time, public television stations are eager to make the
transition to the new NEXT GEN TV broadcast standard, with its
transformative potential for enhanced public service in telehealth,
Smart Cities connections, precision agriculture, national security
applications as well as remote learning and public safety
communications. This transition will cost our system an additional $400
million.
Public broadcasting respectfully requests that Congress take
another substantial step toward securing our current and future public
service goals in the FY 2023 appropriations process.
The $565 million that public broadcasting is requesting in FY 2023
for FY 2025 will help restore lost purchasing power and help local
stations begin to replace aging infrastructure, invest in new
technology, and invent a future that will educate more children and
adults, provide additional critical resources and capabilities to
teachers and schools, 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 policy to increase Federal funding for
this valuable service that provides an exceptional return on
investment.
Education
Public media is committed to education and service for all
Americans. Public broadcasting allows people at all income levels and
from all parts of the country-rural and urban-to have access to
consistent, high-quality, diverse content for free. This educational
programming is readily available to children, parents, teachers, senior
citizens, those pursuing their high school equivalency degrees, and
many others.
Public television's educational broadcast content has helped more
than 90 million pre-school age children get ready to learn and succeed
in school. 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 LearningMedia--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,
Smithsonian Institution, 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 broadcast 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.
During the COVID-19 pandemic, many stations have used this expanded
broadcast capacity to directly serve families and students from Pre-K--
12 with state standards aligned educational content and instructional
content created by teachers. Last year, 13.5 million kids ages 2-8
watched PBS KIDS content. Parents also looked to public television for
educational resources, with PBS Parents users increasing by 80 percent
during the pandemic.
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 retraining American
veterans, by providing digital learning opportunities for training,
licensing, continuing education credits, soft skills 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, PBS WARN uses the public television
interconnection system and local stations' broadcast infrastructure to
support 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 use 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.
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. Throughout the pandemic,
public television has provided essential front-line coverage to ensure
Americans have the facts they need to stay healthy and local
information on where they can turn for help if they need it.
For the 19th year in a row, PBS was ranked the most trusted among
national media institutions. That trust is more important than ever.
Americans tune into their local public television station or view their
online resources for trusted information that can help keep them safe.
Local public television stations often serve as the State-level
``C-SPAN,'' covering state government actions. As some of the last
locally controlled media, public television 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 3 years ago, 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.
The $565 million that public broadcasting is requesting in fiscal
Year2025 is 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 2-year advance funding to raise State,
local and private funds, ensuring the continuation of this strong
public-private partnership. These Federal funds act as the seed money
for fundraising efforts at every local station, no matter its size.
Advance funding also benefits the partnership between States and
stations since many States operate on 2-year budget cycles.
Finally, the 2-year advance funding mechanism gives stations and
producers, both local and national, the critical lead time needed to
raise the additional funds necessary to sustain effective partnerships
with local community organizations and engage them around high-quality,
award-winning programs. Producers and directors like Ken Burns, Henry
Louis Gates, Jr., Jamila Wignot, Stanley Nelson and others spend years
developing programs like The Vietnam War, Country Music, Ben Franklin,
Rita Moreno: Just a Girl Who Decided to Go For It, Amy Tan: Unintended
Memoir, Asian Americans, Reconstruction: America after the Civil War, ,
African Americans: Many Rivers to Cross and upcoming documentaries like
The U.S. and the Holocaust, Becoming Frederick Douglass and Harriet
Tubman: Visions Of Freedom. It would be impossible to produce this in-
depth programming and the curriculum-aligned educational materials that
accompany it without the 2-year advance funding.
public broadcasting interconnection: $60 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 FY 2018, Congress moved
to fund interconnection for public broadcasting on an annual, rather
than decennial, basis to enable dynamic, incremental upgrades based on
rapid advances in technology. In addition, to the interconnection
system, this account also provides funding for other technologies and
services that create infrastructure and efficiencies within the public
media system.
Public television is requesting $60 million for interconnection in
fiscal Year2023 to support continued investments in the public
television and radio interconnection systems and new shared
technologies and services including: cybersecurity; data analytics and
business intelligence; single sign on service, a content management
system and a content delivery network.
This funding request would help build out a suite of interoperable
digital platforms and solutions which would effectively and efficiently
help stations meet the growing and dynamic needs of digital audiences.
This investment would help ensure that every public television and
radio station, regardless of size or location, can provide its
community with critical services and content on modern technology and
platforms, meeting Americans where they are.
ready to learn: $30.5 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 the RTL grant, CPB and PBS have delivered evidence-based,
innovative, high-quality content to improve the math, science, and
literacy skills of high-need children. CPB, PBS, and local stations
have ensured that the kids and families most in need have access to
these groundbreaking and proven effective educational resources. In
addition to children, this outreach helps empower caregivers to 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: Elinor Wonders Why, Peg + Cat, SuperWhy!, Martha
Speaks, Odd Squad and Molly of Denali--a curious and resourceful 10-
year-old Alaska Native girl who lives in the fictional village of Qyah,
Alaska--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.
The current CPB and PBS RTL grant partnership is a 5-year
comprehensive, learning and engagement initiative called ``Learn
Together: Connecting Children's Media and Learning Environments to
Build Key Skills for Success.'' CPB and PBS are creating dynamic, new
learning experiences produced by diverse media makers that will expose
young children to career and workforce opportunities; helping them
build vital functional literacy, critical and computational thinking,
collaboration, and ``World of Work'' skills and knowledge.
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:
--Children from low-income households who were provided with RTL-
funded Molly of Denali videos, digital games, and activities
were better able to solve problems using informational text,--
oral, written, or visual text designed to inform--a fundamental
part of literacy that paves the way for future learning,
particularly in social studies and the sciences. After only
nine weeks of access, this impact is equivalent to the
difference in reading skills a first-grader typically develops
over 3 months.\1\
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\1\ Kennedy, J. L., Christensen, C., Maxon, T., Gerard, S., Garcia,
E., Hupert, N., Vahey, P., & Pasnik, S. (2021).
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--Ready To Learn-funded resources from the PBS KIDS series The Cat in
the Hat Knows a Lot About That! increased science learning in
children from low-income households and had a positive impact
on children's understanding of core physical science concepts
of matter and forces--equivalent to the difference in science
knowledge an early elementary student develops over 5
months.\2\
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\2\ (Grindal, T., Silander, M., Gerard, S., Maxon, T., Garcia, E.,
Hupert, N., Vahey, P., Pasnik, S. (2019). Early Science and
Engineering: The Impact of The Cat in the Hat Knows a Lot About That!
on Learning. New York, NY, & Menlo Park, CA: Education Development
Center, Inc., & SRI International.)
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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 5-year
grant round, public broadcasting leveraged an additional $50 million in
non-Federal funding to augment the $73 million investment by the
Department of Education. RTL exemplifies how the public-private
partnership that is public broadcasting can change lives for the
better.
A funding level of $30.5 million is requested in FY 2023 to support
current grantees and further enhance the discoverability and 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 Year2023 would provide the fourth
year of funding in the latest grant round. Providing $30.5 million for
Ready to Learn in FY 2023 will ensure that CPB, PBS and stations can
continue to create the highest quality, proven-effective kids
educational media, meeting kids, caregivers and teachers where they are
on a variety of platforms, while expanding local, on-the-ground
outreach through 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 or
streaming subscriptions 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 $565 million in FY
2025 for CPB in addition to $60 million in FY 2023 for public
broadcasting's interconnection system and $30.5 million in FY 2023 for
the Ready To Learn Program.
NONDEPARTMENTAL WITNESSES
Prepared Statement of the Academy for Radiology & Biomedical Imaging
Research
Chair Murray, Ranking Member Blunt, and members of the
subcommittee, I am Mitchell Schnall, President of the Academy for
Radiology & Biomedical Imaging Research (Academy), and the Eugene P.
Pendergrass Professor of Radiology and Chair of the Radiology
Department at the Perelman School of Medicine at the University of
Pennsylvania. The Academy is comprised of more than 200 academic
research departments, patient advocacy groups, industry partners, and
imaging societies, representing thousands of radiologists and
researchers in all 50 States. We are the only advocacy organization
representing the broad spectrum of the imaging research community by
collectively advocating for robust and consistent Federal research
funding.\1\ It is my pleasure to submit this testimony on behalf of the
Academy. We strongly support at least $49.048 billion for the National
Institutes of Health's base appropriation. This figure represents an
increase of $3.5 billion over FY2022 plus the release of the 21st
Century Cures funds. The Academy also supports a proportional increase
to the National Institute of Biomedical Imaging and Bioengineering
(NIBIB), resulting in at least $458.5 million for FY2023--a $33.6
million increase over the FY2022 enacted level. Further, should the
Advanced Research Projects Agency for Health (ARPA-H) or pandemic
preparedness efforts progress, funding should be designated separately
from NIH's base and should supplement, not supplant, investment in
basic research. While the Academy is supportive of ARPA-H and pandemic
preparedness, and acknowledges they hold significant and exciting
potential, investigator-initiated research is the foundation of basic
science.
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\1\ https://www.acadrad.org/about-the-academy/.
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Moreover, Congress must work to ensure Federal appropriations are
enacted on time to avoid disruptive interruptions to the research
continuum. We must avoid relying on continuing resolutions, which are
insufficient to meet evolving needs. At the end of FY2021 and beginning
of FY2022, we received many examples of research left unpursued because
funding was not available because of reliance on continuing
resolutions. Delaying otherwise meritorious research only serves to
further extend the time until we make lifesaving discoveries that help
patients fighting deadly and debilitating diseases. Through consistent,
robust funding for NIH and our National research infrastructure, we can
continue to make advancements that will improve the lives of patients.
The Academy is extremely grateful for the subcommittee's long-running
support of NIH and encourages you to prioritize NIH for consistent and
dependable funding levels for biomedical research, radiology, and
imaging science.
imaging advancements and innovations help patients
Imaging serves as a necessary diagnostic tool that researchers and
clinicians of all types use to help advance our understanding of
biology and to develop and deliver treatments. This is particularly
evident in the research examples provided below and through discussions
about ARPA-H. A review of the past ARPA-H listening sessions and
discussions with Congressional offices shows the value of improved
imaging and diagnostics in support of a spectrum of biomedical research
advances--resulting in direct benefits to patients. By improving our
imaging tools and techniques, we broaden the resources available to
address many challenging medical conditions. In my own work as a
clinician-scientist, I use state-of-the-art technologies like
specialized magnetic resonance imaging (MRI) and 3-dimensional
mammography to improve the diagnosis and treatment of multiple cancer
types, including breast, prostate, and pancreatic. Imaging research
serves many purposes and can significantly improve patient outcomes.
Basic science advancements translate into a variety of clinical
applications benefitting patients. Included below are examples of
imaging applications to the Covid-19 pandemic, leveraging innovative,
artificial intelligence technologies, and detecting and treating
diverse types of cancer.
Detecting Covid-19 Quickly and Easily: From 0 to 1 billion+
Launched in April 2020 and led by the National Institute of
Biomedical Imaging and Bioengineering, the Rapid Acceleration of
Diagnostics (RADx)-Tech program has been instrumental in the Nation's
Covid-19 testing strategy and response.\2\ This Congressionally
supported program utilizes a competitive system to funnel the best
ideas quickly toward implementation. In short, RADx-Tech accelerated
the development and availability of Covid-19 tests. In September 2020,
there were limited testing options, accounting for fewer than 700,000
Covid-19 tests per day for laboratory and point of care use. As of
February 2022--less than 18 months later-there were 41 FDA-approved
tests, including at-home, point of care, and laboratory options,
resulting in over 1.8 billion tests produced cumulatively. That same
month, over 5.6 million tests per day were manufactured--over 168
million in total for the month.\3\ These tests contributed directly to
our understanding of a devasting pandemic and put tools directly into
patient's hands. When coupled with strong support from policymakers,
the funneling pipeline used by NIBIB can accelerate extraordinary
advancements.
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\2\ https://www.nibib.nih.gov/covid-19/radx-tech-program.
\3\ https://www.nibib.nih.gov/covid-19/radx-tech-program/radx-tech-
dashboard.
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Machine Learning Technology Improves Diagnostic Imaging and Patient
Outcomes
Applying artificial intelligence and machine learning tools to the
imaging space continues to improve our diagnostic capabilities. In my
testimony last year, I highlighted the efforts of the Medical Imaging
and Data Resource Center. MIDRC continues to apply artificial
intelligence and machine learning technology for screening, detection,
staging, and follow-up for Covid-19 patients. Throughout 2021 and into
2022, MIDRC collected over 85,000 images and is progressing toward an
artificial intelligence algorithm for automating image analysis to
diagnose patients and provide a disease prognosis more quickly and
efficiently.
In further examples of AI/ML applications, the University of
Washington is pursuing multiple strategies to improve mammography. A 7-
year MERIT award from the National Cancer Institute has enabled
building AI algorithms for breast cancer analysis, building off a
crowdsourced challenge. UW also recently launched a 5-year initiative
funded by NIH to create an academia-industry collaboration to validate
multiple, commercial AI algorithms for automated mammography screening
interpretation. Like in the Covid-19 context, reliably automating the
review and evaluation of screenings, especially as it adapts to new
variables, could significantly improve the detection, treatment, and
outcomes of breast cancer.
In a final example of AI-based applications, academic-industry
partnerships are working to optimize imaging and diagnosis using AI-
enabled Magnetic Resonance Imaging (MRI). This effort, which improves
image quality and processes those images efficiently, is cutting exam
times by over 30 percent. These advances are being disseminated broadly
throughout the industry and are reshaping diagnostic capabilities and
patient experience. Reducing the length of an examination accelerates
the time to diagnosis and treatment, increases the efficiency of the
imaging center to see more patients, and has a significant patient
impact through reduced anxiety and increased satisfaction during a
stressful time.
Better Images, Less Radiation, Faster Results
Finally, work conducted at the University of California-Irvine is
improving a well-known and trusted tool, x-ray technology. The new
imaging system, x-ray-induced acoustic computed tomography (XACT), is a
promising alternative to traditional technology. Supported by an NIH
grant, XACT can image the human body much faster while requiring a
lower radiation dose for the patient. Moreover, a portable model is in
development that can reach more patients, particularly in remote areas
that may have difficulty accessing doctors' offices and care centers.
XACT can be used for a wide range of image-guided procedures, such as
biopsies, placement of drainage tubes, catheters, tumor ablation, and
injections. The improved tool generates faster diagnosis and treatment,
lowers radiation exposure, and reaches underserved communities, all
leading to improved outcomes across a wide range of treatment or
imaging interventions.
summary and conclusion
Sustained and robust NIH funding is crucial to advancing our
efforts to understand and treat a myriad of diseases and disorders. NIH
investments are also a key economic driver. In 2022, NIH funds
generated $2.60 in economic activity for every $1 of research and
flowed to every State in the Nation.\4\ Funding NIH's base program with
at least $49.048 billion will provide the robust support needed to
sustain growth and secure advancements in biomedical research.
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\4\ https://unitedformedicalresearch.org/wp-content/uploads/2022/
03/UMR_NIHs-Role-in-Sustaining-the-U.S.-Economy-FY21.pdf.
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Thank you for your strong, continued support of NIH, NIBIB, and all
the Institutes and Centers working to advance our biomedical research
efforts and to improve the lives of patients worldwide. On behalf of
the Academy, I urge you to continue your strong support of our Nation's
research and innovation enterprise.
[This statement was submitted by Mitchell Schnall, M.D., Ph.D.,
President,
Academy for Radiology & Biomedical Imaging Research.]
______
Prepared Statement of Accessia Health
summary of fiscal year 2023 appropriations recommendations
_______________________________________________________________________
--Provide the National Institutes of Health (NIH) with at least $49.
billion and provide individual NIH Institutes and Centers with
proportional discretionary increases.
--Please provide additional, distinct funding for the emerging
Advanced Research Projects Agency for Health (ARPA-H) at
NIH, which would facilitate implementation of this
important program without supplanting ongoing NIH research
activities.
--Provide the Centers for Disease Control and Prevention (CDC) with
at least $11 billion to facilitate timely public health efforts
along with proportional discretionary increases for CDC Centers
and Divisions.
--Please provide $6 million for the Chronic Disease Education and
Awareness Program at CDC.
--Provide the Health Resources and Services Administration (HRSA)
with a funding level of at least $9.8 billion.
--Please support the development and advancement of innovative
payment models and efforts to effectively enhance coverage and
access, including through additional resources for the Centers
for Medicare and Medicaid Services (CMS).
_______________________________________________________________________
Thank you for the opportunity to submit testimony on behalf of
Accessia Health and the community of patients we serve. Chairwoman
Murray, Ranking Member Blunt, and distinguished members of the
subcommittee, thank you for the significant ongoing investments in HHS,
particularly medical research and public health programs that improve
health for patients with debilitating and life-threatening conditions.
Please maintain this commitment and further enhance support for medical
research and public health programs as you work with your colleagues on
appropriations for Fiscal Year (FY) 2023. Further, please continue to
provide resources for the development and implementation of innovative
models for payment and care delivery that prioritize patients while
properly managing precious resources. Thank you again.
about accessia health
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We understand the patient journey and we are blazing new trails by
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Our patient assistance model includes healthcare education,
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Helping people is our mission and our passion.
advocacy
We advocate for greater access to affordable healthcare and
treatment for patients with rare and chronic diseases. Working on both
the State and Federal level, we strive to ensure patient voices are
heard and patient assistance is protected. Accessia Health also joins
with partner coalitions to advocate for increases funding for
healthcare programs and for patient-centered healthcare reforms.
We encourage you to adopt the aforementioned funding requests to
better meet the unmet needs of patients with serious illness and to
address gaps in care through systems innovation and scientific
advancements. Our vision, is one where patients living with chronic
illness, rare disease, or disability no longer struggle to access the
treatment, and assistance they need to lead their best life.
specialty drug carve out: one example of an area where patient
protections are needed
Third Party Administrators have reached out to employers
advertising a new way to save healthcare resources for the company. The
employer contracts with the administrator, then the entities work
together to curtail the prescription drug formularies that the company
will offer to their employees, specifically leading to cutting out
specialty drugs from the formulary. Typically, the price point for the
formulary cutoff are treatments greater than $350. The employer is then
told that the administrator will work with their employees to obtain
any treatment if needed free of charge. The employee will then receive
a concierge advocate who will work to obtain free treatments from the
manufacturers. The self-insured plan saves massively on their
healthcare spending less the contracted cost of the concierge workers.
This is explained as a benefit to the employees that they will be
receiving their treatments for free.
There are several problems with the sustainability of this new
model. First and foremost, manufacturer patient assistance programs
impose major limitations on these free product patient assistance
programs. Historically manufacturer patient assistance programs were
created to serve uninsured patients for a limited period time. However,
many manufacturers will provide compassionate drugs to patients with
commercial coverage if the product is not covered on the plan drug
formulary. Due to the limited time, the concierge advocate will try
additional strategies such as non-medical drug switching and/or claims
they can import drugs from outside the United States. These programs
also may have an income requirement to qualify. Manufacturer patient
assistance programs are not a long-term solution for patients with rare
and chronic conditions to obtain needed treatments and therapies. Since
manufacturer patient assistance program are a benefit they offer,
continuing this practice could encourage them to severely curtail
access to these programs.
Congress needs to engage with the Biden-Harris Administration to
end this practice that will clearly hurt patients with rare and chronic
illnesses who need ongoing access to life sustaining treatments and
therapies. In 2019, 44 percent of patient did not purchase a
prescription due to cost. This practice, which is beginning to grow in
the United States will further limit patient access to needed
treatments and therapies. The Department of Labor, the agency with
regulatory authority over ERISA plans, must work with Congress and also
issue guidance restricting this practice.
patient perspectives
I was diagnosed with Fabry 6 years ago and my husband was diagnosed
with Pompe 3 years ago. I don't know what we would do without Accessia
Health's help--we would be bankrupt. With both of us having rare
diseases, the bills would be astronomical. Everyone at Accessia Health
is so helpful. I haven't met one person who isn't kind. --Lupe and
Duane Austin
Accessia Health is a lifesaver. I was diagnosed with a rare genetic
disease, Fabry disease, right after I purchased my new home. My
treatments are over $40,000 every two weeks. I wasn't sure how I was
going to pay my mortgage, it's only with the help of Accessia Health
that I'm able to stay in my home and afford my treatments, medical
bills and nursing services.'' --Lisa Wright
Accessia Health's ACCESS program helped me receive Social Security
Disability, which let me adopt my son Jacob. --Randy Russell
[This statement was submitted by Gwen Cooper, President & CEO,
Accessia Health.]
______
Prepared Statement of the Ad Hoc Group for Medical Research
The Ad Hoc Group for Medical Research is a coalition of nearly 400
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 at least $49.1 billion for
NIH's base program level budget in FY 2023.
As a result of the strong, bipartisan vision of the House and
Senate Labor-HHS-Education subcommittees over the last 7 years,
Congress has helped the agency regain some of the ground lost after
years of effectively flat budgets. That 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. As the subcommittee has
recognized, to remain a global leader in accelerating the development
of innovative prevention strategies, advanced diagnostics, pioneering
treatments, and life-changing cures, , and in this time of
unprecedented scientific opportunity, it is essential that Congress
sustain long-term robust increases in the NIH budget.
In FY 2023, the Ad Hoc Group for Medical Research supports at least
$49.048 billion for the NIH base program level budget, which would
represent an increase of $4.1 billion over the comparable FY 2022
funding level (an increase of $3.5 billion or 7.9 percent in the NIH
appropriation plus funding from the 21st Century Cures Act for specific
initiatives). Importantly, the Ad Hoc Group strongly urges lawmakers to
ensure that any funding for the new Advanced Research Projects Agency
for Health (ARPA-H) supplement our $49 billion recommendation for NIH's
base budget, rather than supplant the essential foundational investment
in the NIH. This funding level, supported by nearly 400 stakeholder
organizations, would provide real growth in the base budget above
inflation, expanding NIH's capacity to support promising science in all
disciplines. In addition, the coalition supports the president's
proposal to supplement NIH's budget with additional mandatory funding
to speed the pace of pandemic response and readiness.
Importantly, we also recommend a funding allocation for the Labor-
HHS-Education subcommittee in FY 2023 that allows for the necessary
investment in NIH and other agencies that promote the health of our
Nation. We believe that science and innovation are essential if we are
to continue to meet current and emerging health challenges, improve our
Nation's physical and fiscal health, and sustain our leadership in
medical research.
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, Washington, D.C., and U.S. territories. 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. For patients and their families,
NIH is the ``National Institutes of Hope.'' The following are a few of
the many examples of how NIH research has contributed to improvements
in the Nation's health.
--NIH-funded basic research laid the groundwork for the novel mRNA
vaccine technology used in the first two FDA approved SARS-CoV-
2 vaccines. Vaccines continue to be one of our most cost-
effective public health tools with every $1 spent on routine
childhood vaccinations estimated to save $5 in direct costs,
and $11 in broader costs to society.
--In 2020, the gene editing tool CRISPR was successfully used to
treat the inherited blood disorders sickle cell anemia and
beta-thalassemia, only 8 years after the primordial bacterial
immune system was harnessed for therapeutic use in the
laboratory.
--Following nearly three decades of NIH-funded research into novel
mechanisms of drug action, breakthroughs in the treatment of
depression came in 2019 with two new FDA-approved drugs--one
for treatment-resistant depression and the first ever treatment
for postpartum depression.
--In 2007, induced pluripotent stem cells (iPSC) were discovered when
adult cells were re-engineered into early non-differentiated
versions of themselves. In 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 most common
form of Age-related Macular Degeneration, 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.
--The death rate for all cancers combined has declined in adults
since the early 1990s and since the 1970s for children. The
cancer death rate for men and women combined fell 32 percent
from its peak in 1991 to 2019, the most recent year for which
data were available.
Sustaining Scientific Momentum Requires Sustained Funding Growth.
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 7 years have allowed NIH to more than 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. In FY 2021, NIH was able to fund more than 1,500 grants
for ESIs, reinvigorating the spirits of researchers in the biomedical
workforce. Sustained increases are needed to allow NIH to continue
support of new talent and innovation in medical research.
Even with recent investments 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,
gender, and geographic 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 FY 2021,
NIH-funded research supported more than 552,000 jobs across the U.S.
and generated more than $94 billion in 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. Robust funding of the NIH,
and strengthening our commitment to medical research, is a critical
element in ensuring the health and well-being of the American people
and our economy. Therefore, for FY 2023, the Ad Hoc Group for Medical
Research recommends that NIH receive at least $49.048 billion in base
funding to advance the foundational research NIH supports and continue
the momentum in our Nation's investment in medical research, and that
any funding for ARPA-H supplement our $49 billion recommendation for
NIH's base budget, rather than supplant the essential foundational
investment in the NIH.
______
Prepared Statement of the Afterschool Alliance
As you begin work on the Labor, Health and Human Services, and
Education, and Related Agencies Appropriations bill for fiscal year
2023, the Afterschool Alliance is joined by the organizations signing
below in thanking you for increasing funding for the Nita M. Lowey 21st
Century Community Learning Centers (21st CCLC) (Title IV Part B of the
Every Student Succeeds Act) in fiscal year 2022, allowing an additional
30,000 students to access quality afterschool, before-school and summer
learning programs. The pandemic has shown how important robust
afterschool and summer learning programs are to working families and
our most vulnerable students, and how vital resources are to support
these programs to ensure they are available and effective for the
children who need them. With this in mind, we request that you support
a funding level of $500 million for the 21st CCLC program in fiscal
year 2023.
Through the 21st CCLC initiative, which serves about 1.8 million
students in all 50 States and the American territories, local school
and community-based organizations provide students in kindergarten
through 12th grade with a safe and supportive environment where they
participate in academic enrichment opportunities, get excited about
learning new things, and connect with caring mentors before school,
afterschool, and during the summer months. 21st CCLC programs serve
students attending high-poverty, low-performing schools, and prior to
the COVID-19 pandemic, these programs were a vital source of support
for underserved communities. Now, with students back in-person at
school after having spent significant amounts of time out of the
classroom since March 2020, feeling isolated from their teachers and
peers, and in need of additional enrichment and learning opportunities,
21st CCLC programs are more essential than ever.
We are grateful that the American Rescue Plan Act (ARPA) included
set-aside language allowing comprehensive afterschool and summer
learning and summer enrichment programs to be eligible to receive
emergency Covid-19 relief funds to help student recover missed
instructional time; however, increased staffing and program costs as
well as unprecedented demand for local afterschool programs have pushed
programs to the brink. The most recent America After 3PM report from
the Afterschool Alliance found an all-time high of 24.6 million
children were unable to access a program, with cost and program
availability as the leading factors.\1\ Additionally a fall 2021 survey
of 1,000 afterschool program providers found that 54 percent had
waiting lists, a significantly greater percentage than in the past.\2\
While ARPA funds for out of school time programs are focused on the
specific challenges related to the pandemic and are primarily directed
to local school districts; community based providers including
nonprofit, faith-based, park and recreation, library, and other non-
school providers serving a wide range of vulnerable students continue
to struggle to access the funding resources they need, with only 19
percent of providers surveyed reporting the ability to access Federal
Covid-19 relief funds.\3\
---------------------------------------------------------------------------
\1\ America After 3PM, 2020 http://www.afterschoolalliance.org/
AA3PM/.
\2\ Afterschool in the time of Covid-19 tinyurl.com/362ff68f.
\3\ Ibid.
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Federal 21st CCLC formula grants to States enable rural, urban and
suburban communities to leverage local resources by providing 3-5 years
of funding to support local partnerships among community-based
organizations, faith-based partners, private industry, and school
partners (public, private, and charters). This funding infrastructure
provided by 21st CCLC is foundation of afterschool and summer
programming and enables communities to attract other partners and
resources for students including access to mentors, new learning
opportunities, nutritious snacks and meals, as well as helping address
student mental health programs. Funds also are used for training,
evaluation, and assistance to ensure quality programming is offered.
While reflecting the needs of local communities, 21st CCLCs expand
student access to activities and services designed to reinforce and
complement the regular academic program, such as hands-on learning,
physical activity, workforce development opportunities including
gaining knowledge and skills in science, technology, engineering, and
math (STEM), drug and violence prevention programs, counseling
programs, the arts, and more.
In addition, the outcomes of 21st CCLC funded afterschool and
summer learning programs are undeniable. Over a span of 20 years,
researchers have built an evidence base for quality and effectiveness
by studying afterschool programs across the Nation. An independent
report published in March 2019 and supported by the Wallace Foundation,
reviewed research from 2000 to 2017 and found programs improved a wide
range of outcomes including student attendance, achievement in
mathematics and English; grade promotion and graduation rates, and
student health and fitness. This research spans the country, all age
groups and a wide variety of indicators of well-rounded student
success. Furthermore, the most recent Department of Education national
annual performance report found that 70 percent of students increased
their rates of homework completion and class participation while 63
percent of students improved their classroom behavior. Increasing
funding for this proven program will continue to reap benefits in the
communities where the 10,500 21st Century Community Learning Centers
currently thrive.
We thank you for your continued support of afterschool and summer
learning programs, and for your work on behalf of children and working
families. We ask that the Labor, Health and Human Services, Education,
and Related Agencies subcommittees ensure that the Nita M. Lowey 21st
Century Community Learning Centers Program remains a vital resource to
students and families moving forward. Contact Information: Erik
Peterson, Afterschool Alliance [email protected].
Signed:
Afterschool Alliance
After-School All-Stars
AlphaBEST Education, Inc.
America SCORES
Boys & Girls Clubs of America
Camp Fire National
Children's Defense Fund
City Year, Inc.
Collaborative for Academic, Social and Emotional Learning (CASEL)
Committee for Children
Communities In Schools
Council of Administrators of Special Education
EDGE Consulting Partners
Every Hour Counts
Food Research & Action Center
Forum for Youth Investment
Foundations, Inc
Girls Inc.
Institute for Educational Leadership
integrate opportunity, LLC
KP Catalysts, LLC
MENTOR
National AfterSchool Association
National Alliance for Public Charter Schools
National Association of Elementary School Principals
National Association of School Psychologists
National Association of Secondary School Principals
National Girls Collaborative
National Summer Learning Association
National Urban League
National Recreation and Park Association
Outward Bound USA
Public Advocacy for Kids (PAK)
Save the Children
Search Institute
UnidosUS
YMCA of the USA
State and Local Organizations
Alaska Afterschool Network AK
Alaska Children's Trust AK
California School-Age Consortium CA
A WORLD FIT FOR KIDS! CA
EduCare Foundation CA
MENTOR California CA
California Teaching Fellows Foundation CA
California AfterSchool Network CA
EDMO (Edventure More) CA
Minga Education Group CO
Onward! CO
MENTOR Colorado CO
Scholars Unlimited CO
Sims-Fayola Foundation CO
YMCA of Metropolitan Denver CO
Academy of Arts and Knowledge CO
Riverside Educational Center CO
Brady High School CO
Project Dream with the Lake County School District CO
School Community Youth Collaborative CO
WeldRE5J--Milliken Elementary CO
Pagosa Arts Initiative CO
Boys & Girls Clubs of Pueblo CountyCO
EdAdvance CT
Prime Time Palm Beach County FL
Communities In Schools of Georgia GA
Georgia Statewide Afterschool Network GA
Voices for Georgia's ChildrenGA
We Love Buford Highway GA
Parents And Children Together HI
Iowa Afterschool Alliance IA
Girl Scouts of Silver Sage Council ID
After School MattersIL
ACT Now IL
Brighton Park Neighborhood CouncilIL
Chinese American Service League IL
Fight Crime: Invest in Kids, Illinois IL
ReadyNation, Illinois IL
AYS--At Your School IN
Boys & Girls Clubs in Indiana, Inc. IN
Indiana Alliance of Boys & Girls Clubs IN
Kentucky Out of School Alliance KY
Covington Partners KY
Kentucky/West Virginia Alliance of YMCAs KY
Maryland Out of School Time Network MD
Maine Mathematics and Science Alliance ME
KYD Network MI
Youth Development Resource CenterMI
Michigan Afterschool Association MI
Michigan's ChildrenMI
MENTOR Minnesota MN
YouthPrise MN
MENTOR North Carolina NC
Girls Inc. of Santa Fe NM
New York State Network for Youth Success NY
Ohio Afterschool Network C/O PAST Foundation OH
The Opportunity Project OK
Tula Public Schools OK
MENTOR Independence Region PA
North End OutreachRI
MENTOR Rhode Island RI
ALPHAS RI
South Carolina Alliance of YMCAs SC
South Dakota Afterschool Network SD
United Way of West Tennessee TN
Girls Incorporated of Kingsport TN
Greater Kingsport Family YMCA TN
United Way of Greater Kingsport TN
United Way of Wilson County and the Upper Cumberland TN
Memphis Music Initiative TN
MENTOR Memphis Grizzlies TN
Tennessee Afterschool Network TN
United Ways of Tennessee TN
Backfield in Motion TN
Nashville After Zone Alliance/Nashville Public Library TN
Nations Ministry Center TN
YMCA of Middle Tennessee TN
YMCA Y-Quest TN
Dallas Afterschool TX
BEACON Afterschool Program UT
Utah Afterschool Network, Inc. UT
Virginia Partnership for Out-of-School Time (VPOST) VA
MENTOR Virginia VA
MENTOR Vermont VT
Vermont Afterschool VT
Mentor Washington WA
FuturesNW WA
Empowering Youth Mentor Program WA
Communities In Schools of Washington State WA
Joyce L. Sobel Family Resource Center WA
Change the Narrative WA
Mentor Washington WA
Lopez Island Family Resource Center WA
Big Brothers Big Sisters of Southwest WA
Hey MentorWA
Youth Development Executives of King County WA
School's Out Washington WA
Youth in Focus WA
Circle Faith Future WA
Youth Rise of Washington WA
______
Prepared Statement of The AIDS Institute
Dear Chairwoman Murray 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 viral hepatitis programs in the FY 2023 Labor, Health
and Human Services, Education, and Related Agencies (L-HHS)
appropriation measure. This year's L-HHS bill is more important than
ever, as it will set up critical funding streams to help rebuild and
reinvest in programs combatting HIV and viral hepatitis. As you craft
the FY 2023 L-HHS appropriations bill, we urge you to significantly
increase funding for core public health programs that treat and prevent
HIV and viral hepatitis in the United States, as well as fund newer
programs that seek to end the HIV and viral hepatitis epidemics. These
programs, many of which are a part of the safety net health system, are
key to ending these epidemics and protecting our Nation from future
infectious disease pandemics.
hiv in the united states
Approximately 1.2 million people are living with HIV in the U.S.
Since the height of the epidemic, there have been tremendous
advancements in HIV treatment and prevention. Today, HIV can be treated
as a chronic health condition, and when that treatment is successful,
it renders HIV untransmissible. People living with HIV who are able to
get and stay in treatment can live a near normal life span, despite the
impact of the virus. The toolbox for HIV prevention has grown
substantially, with daily and now long-acting pre-exposure prophylactic
(PrEP) medications in addition to traditional prevention techniques,
such as condoms and syringe service programs. Despite these advances,
progress toward ending the HIV epidemic has plateaued, with
approximately 38,000 new infections each year since 2013.
The progress made to date has been inequitable, as demonstrated by
the fact that three quarters of new HIV infections now occur among
people of color. Federal programs to prevent and treat HIV must address
the racial and ethnic disparities that contribute to this greater risk,
and Congress must invest new resources in innovative and effective
prevention and treatment programs to end the HIV epidemic as a matter
of racial justice.
Congress must invest new resources in innovative and effective
prevention and treatment programs to end the HIV epidemic. These new
resources must support programs in communities that bear the greatest
risk and impact of HIV. Ending the HIV epidemic has become a matter of
racial justice.
ending the hiv epidemic initiative
The Ending the HIV Epidemic Initiative (EHE), which began in 2019,
is focused on reducing new HIV infections by 90 percent over 10 years.
In the last 3 years, your Committee provided $260 million, $404
million, and $473 million respectively for the EHE Initiative.
Resources are focused on 57 jurisdictions with the greatest share of
HIV incidence, enabling these jurisdictions to craft and implement
community-specific plans to reduce the spread of HIV. HRSA's EHE
funding for Community Health Centers has already shown promising
results, with over 389,000 new PrEP prescriptions for people at risk
for HIV. Through this funding the Ryan White Program engaged over
19,000 people in HIV care during 2020. With greater funding and
continued commitment from the Biden Administration to grow the EHE
Initiative, The AIDS Institute believes this nation can make
significant progress toward the goal of ending the HIV epidemic.
We urge you to fund year four of the EHE Initiative at the
following levels: $310 million for the CDC Division of HIV/AIDS
Prevention to conduct targeted testing, connection to treatment, and
robust surveillance; $290 million for the Ryan White HIV/AIDS Program
to increase access to high-quality HIV care and treatment; $172 million
for HRSA's Community Health Center program to provide prevention
services emphasizing PrEP; $26 million for NIH's Centers for AIDS
Research to provide best practices to guide the plan; and $52 million
for the Indian Health Service to provide HIV prevention, treatment,
education, and hepatitis C (HCV) elimination in Native American
communities.
cdc hiv prevention
CDC's Division of HIV Prevention focuses resources on those
populations and communities most affected by investing in high-impact
prevention. Through partnerships with State and local public health
departments and community-based organizations, the CDC has expanded
targeted prevention programs that work to address racial and geographic
health disparities. 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 $1.233 billion, including $100 million for
school-based HIV prevention efforts and $310 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. The Ryan White Program successfully engages individuals
in care and treatment, increases access to HIV medications, and helps
nearly 90 percent of clients achieve viral suppression (which is
critical for HIV prevention, because people who have achieved viral
suppression cannot transmit HIV to others). The cost of medical care
has consistently increased over the last decade, yet Ryan White
programs have not received increased funding. Because of this, flat
funding is essentially a cut to Ryan White programs.
The AIDS Institute requests that the subcommittee fund the Ryan
White HIV/AIDS Program at a total of $2.942 billion in FY 2023,
distributed in the following manner: Part A at $751.1 million; Part B
(Care) at $509.4 million; Part B (ADAP) at $968.3 million; Part C at
$231 million; Part D at $85 million; Part F/AETC at $58 million; Part
F/Dental at $15.4 million; and Part F/SPNS at $34 million; Ending the
HIV Epidemic Plan at $290 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.
pre-exposure prophylaxis
This year will mark the ten-year anniversary of FDA approving the
first medication for PrEP, potentially the greatest advent in the fight
to prevent HIV. Despite the tremendous promise of PrEP, it is severely
underutilized. Of the estimated 1.2 million people who could benefit
from PrEP, only 23 percent have a prescription. Among racial and ethnic
minorities, only 16 percent of Hispanic/Latino people and 9 percent of
Black people who could benefit from PrEP have a prescription. This
stark divide must be addressed if we are to end the HIV epidemic.
President Biden's FY 2023 Budget Request included a proposal for a
10-year, $9.8 billion mandatory program to provide PrEP at no cost for
un-and-underinsured people and develop a comprehensive provider network
to ensure that we fill the large gaps in PrEP coverage. A national PrEP
program is desperately needed, and it must start right away by
increasing funding for Community Health Centers, CDC-funded health
departments, and HHS grantees to establish and expand PrEP programs in
places where PrEP uptake is low. But to overcome barriers to PrEP
uptake, we also urge the Committee to task and fund HHS with creating a
national PrEP program based on the President's proposal, with input
from the HIV community. This program should ensure that cost is not a
barrier to PrEP; that people have access to the suite of PrEP services
required to maintain a prescription; that providers and people at risk
for HIV know about PrEP and how to get it; and it should combat the
misinformation and stigma that impede demand for PrEP.
viral hepatitis in the u.s
Viral hepatitis continues to have a dramatic impact on the health
of some of the Nation's most vulnerable communities and show no signs
of abating as lack of sterile equipment among people who use drugs
creates perfect conditions for the viruses to thrive. There are highly
effective vaccines to prevent hepatitis A (HAV) and B (HBV), yet cases
of HAV have increased 1,300 percent since 2015 and the number of new
cases of HBV have stubbornly plateaued for the past decade. CDC
estimates there were 57,800 new HCV cases in 2019, with 70 percent of
those cases a result of drug use. Since 2010, the country has
experienced a nearly 500 percent increase in new HCV cases.
Of the nearly 5 million people now living with HBV and/or HCV in
the U.S., as many as 65 percent are not aware of their infection. Left
untreated, viral hepatitis causes liver damage, liver disease, cancer,
and death. It also contributes to or exacerbates other serious and
chronic conditions, increasing health care costs. We also expect to see
even greater increases in viral hepatitis cases when data become
available for 2020, as we know that many state public health systems
were unable to maintain outreach, testing, and treatment services for
viral hepatitis while also battling COVID-19, and many harm reduction
programs were also unable to operate at full capacity during the
pandemic. With so many Americans impacted by viral hepatitis, it is
imperative the evidence-based prevention, testing, surveillance, and
treatment programs have the resources they need to protect the
country's health.
infectious disease impact of the opioid crisis
The recent explosion of opioid use has created tremendous risk for
viral hepatitis and HIV outbreaks and increasing infection rates among
new groups and undoing progress toward curbing transmissions. The
COVID-19 pandemic has caused another surge in injection drug use, with
2020 having the highest overdose death total on record. The systems
built to respond to HIV and viral hepatitis are well poised to conduct
outreach, engagement, and early intervention services with individuals
who use drugs. A comprehensive response to the opioid epidemic must
include infectious disease prevention efforts to reduce the infectious
disease consequences of the epidemic. Starting in FY19, Congress
allocated new funding to surveil, prevent and treat infectious diseases
commonly associated with injection drug use, including viral hepatitis
and HIV. We urge the subcommittee to appropriate $150 million for the
CDC's infectious diseases and opioid epidemic efforts.
cdc viral hepatitis prevention
CDC's Viral Hepatitis program is the lead agency combating viral
hepatitis at the National level by providing important technical
assistance and funding to the States. The division is currently funded
at only $41 million and has received only minor increases over the past
decade. Current funding is nowhere near what is needed for a national
viral hepatitis program focused on decreasing mortality and reducing
the spread of the disease. We have the tools to prevent this growing
epidemic, laid out in the Viral Hepatitis National Strategic Plan for
the United States: A Roadmap to Elimination (2021--2025). However, only
with a significant investment can there be an adequate level of
testing, education, screening, treatment, surveillance, and on-the-
ground syringe service programs needed to reduce new infections and put
the U.S. on the path to eliminate hepatitis as a public health threat.
This year, we request that the subcommittee appropriate $140 million to
the CDC to address the rise in viral hepatitis and combat the
infectious diseases consequences of drug use.
syringe service programs
Syringe service programs (SSPs) are a critical tool in the fight to
end the drug use epidemic and eliminate viral hepatitis. These
important public safety programs reduce the spread of infectious
disease, prevent overdose deaths, and connect clients to infectious
disease and substance use treatment. The presence of SSPs has been
associated with a 50 percent decline in new HIV and viral hepatitis
incidence, and when combined with medication-assisted treatment, there
is a two-thirds reduction in HIV and HCV transmission. Extensive
research shows that these programs save money and that they do not
increase drug use. But there are not enough SSPs to meet the growing
need, and appropriations language prohibiting them from using Federal
funds to purchase sterile syringes makes it difficult for many programs
to meet their biggest expense. We urge your subcommittee to increase
funding for SSPs and to remove all restrictions on Federal funding for
syringe service programs, including for the purchase of sterile
syringes.
Thank you for your consideration of this written testimony. If you
have questions or would like to discuss these issues further, please do
not hesitate to contact Nick Armstrong at [email protected] or
Frank Hood at [email protected].
[This statement was submitted by Rachel Klein, Deputy Executive
Director, The AIDS Institute.]
______
Prepared Statement of AIDS United
Dear Chairwoman Murray, and Ranking Member Blunt:
As the subcommittee continues its important deliberations on the
Fiscal Year (FY) 2023 Labor, Health and Human Services, Education, and
Related Agencies (Labor-HHS) appropriation bill, we thank you for your
commitment to ending the HIV/AIDS epidemic in the United States and
request that you increase the Federal Government's financial commitment
to meet the goals of the Federal ending the epidemic initiative and
support safety net programs that protect the public health.
Our scientific knowledge of HIV treatment, prevention and
epidemiology has never been stronger, but progress, until recently, has
stalled. Over the past 4 years, a concerted effort to target resources
where they can be most effective has occurred through the Ending the
HIV Epidemic Initiative (EHE Initiative), which has the goal of
reducing new HIV infections by 90 percent by 2030. Additionally, an
updated National HIV/AIDS Strategy was recently released that expands
upon and continues the bipartisan commitment to a whole-of-society
approach addressing the HIV epidemic in the United States. We urge
Congress to capitalize on the expertise developed by communities as
part of the EHE Initiative so that we can improve and grow the
Initiative. Ending HIV by 2030 is possible, but resources are needed to
achieve this goal.
Over the past 2 years, the COVID-19 pandemic has shone a light on
the impact of decades of underfunding our Nation's public health
infrastructure, resulting in an inadequate response to an incredibly
destructive pandemic. But, at the same time, it has shown what is
possible when we come together to confront a significant public health
crisis with the energy and resources that are required. Below are
detailed domestic HIV funding requests that we join our coalition
partners in the Federal AIDS Policy Partnership in urging the committee
to include in the fiscal year 2023 appropriations bills. A chart
detailing each request as well as previous fiscal year funding levels
for each program is available here: http://federalaidspolicy.org/fy-
abac-chart/.
ending the hiv epidemic initiative
Over the last 3 years, on a bipartisan basis, Congress has
appropriated additional funding for the Ending the HIV Epidemic
Initiative, which looks to reduce new HIV infections by 50 percent by
2025, and 90 percent by 2030. We ask Congress to increase funding in FY
2023 for the Ending the HIV Epidemic Initiative by at least the amounts
listed below in the following divisions:
--$310 million for CDC Division of HIV/AIDS Prevention for testing,
linkage to care, and prevention services, including pre-
exposure prophylaxis (PrEP) (+$115 million);
--$290 million for HRSA Ryan White HIV/AIDS Program to expand
comprehensive treatment for people living with HIV (+$165
million);
--$172 million for HRSA Community Health Centers to increase clinical
access to prevention services, particularly PrEP (+$50 million)
the ryan white hiv/aids program
The Ryan White Program provides comprehensive care to populations
disproportionately impacted by the HIV epidemic. Over three quarters of
Ryan White clients are racial and ethnic minorities, and nearly two
thirds are under the Federal poverty level. With 88 percent of Ryan
White clients achieving viral suppression, the program has a proven
track record of success.
The Ryan White Program provides services critical to managing HIV,
often inadequately covered by insurance, including case management;
mental health and substance use services; adult dental services; and
transportation, legal, and nutritional support services. Many Ryan
White Program clients live in States that have not expanded Medicaid
and must rely on the Ryan White Program as their only source of HIV/
AIDS care and treatment. While increasingly clients have access to
insurance, patients still experience cost barriers, such as high
premiums, deductibles, and other patient cost sharing. The Ryan White
Program, particularly the AIDS Drug Assistance Program (ADAP), assists
with these costs.
Currently ADAPs are experiencing increased demand, particularly as
people have lost health coverage and incomes due to the economic impact
of COVID-19 and State and local budgets have been increasingly
stressed. We urge Congress to fund the Ryan White HIV/AIDS Program at a
total of $2.942 billion in FY 2023, an increase of $447.5 million over
FY 2022, distributed in the following manner: Part A: $751.1 million,
Part B (Care): $509.4 million, Part B (ADAP): $968.3 million, Part C:
$231 million, Part D: $85 million, Part F/AETC: $58 million, Part F/
Dental: $15.4 million, Part F/SPNS: $34 million, EHE Initiative: $290
million;
cdc prevention programs
CDC HIV Prevention and Surveillance
Increasing funding for high-impact, community focused HIV
prevention services has proven to result in a strong return on
investment. Not only are these prevention tools effective at halting
new HIV infections, but in the long term they result in decreased
lifetime medical costs that are associated with HIV treatment. HIV
prevention tools that meet the special prevention needs of these
populations must be expanded.
The CDC's Division of HIV Prevention is the Federal leader in
creating innovative strategies for HIV prevention. Through partnerships
with State and local public health departments and community-based
organizations, the CDC has expanded targeted, high-impact prevention
programs that address racial and geographic health disparities. We urge
you to fund the CDC Division of HIV Prevention at $822.7 million in FY
2023, an increase of $67.1 million over FY 2022. This is in addition to
the $310 million for EHE Initiative work within the Division.
CDC Infectious Diseases and Opioid Epidemic Funding
The United States is in the midst of an unprecedented and horrific
overdose crisis. Last year, over 100,000 Americans lost their lives to
overdose. At the same time, HIV transmissions among people who use
drugs have risen over the past 5 years and viral hepatitis transmission
among people who inject drugs continues to skyrocket. Combatting the
overdose crisis requires significant and sustained support for
evidence-based harm reduction interventions, particularly for Syringe
Services Providers (SSPs), who are the first responders to the overdose
and infectious disease crisis and effectively help prevent drug
overdoses and new HIV and hepatitis infections. Harm reduction workers
have the knowledge, contacts, and ability to reach people who use
drugs; they provide naloxone and other overdose prevention resources;
and they connect people to medical care and support. And the CDC's
Opioid Related Infectious Diseases program is best situated to support
harm reduction programs and spearhead funding our syndemic approach to
ending the overdose, HIV and viral hepatitis crises.
We urge you to fund the CDC's Infectious Diseases and Opioid
Epidemic program in FY 2023 at the $150 million, an increase of $132
million over fiscal year 2022.
Syringe Services Programs
The Department of Health and Human Services, relying on the results
of multiple studies, States that syringe service programs (SSPs) are a
proven, evidence-based, and effective tool in HIV and hepatitis
prevention. Beyond providing access to sterile syringes, SSPs prevent
overdose, connect people to substance use treatment, HIV and hepatitis
testing, and other supportive services. SSPs have also been providing
COVID-19 related services to vulnerable populations during the
pandemic. The FY 2022 omnibus 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.
We urge you to remove all restrictions on Federal funding for
syringe service programs in those jurisdictions that are experiencing
or at risk for a significant increase in HIV or hepatitis infections
due to injection drug use.
Pre-Exposure Prophylaxis
Pre-exposure prophylaxis, or PrEP, is a medication that effectively
prevents HIV transmission when taken as prescribed. The first PrEP
medication was approved by the FDA 10 years ago, and now there are
multiple medications available, including generic medications and a new
long-acting injectable version of PrEP. Increasing access to PrEP has
been a key strategy in ending the HIV epidemic, yet more progress must
be made.
It is estimated that only 23.4 percent of people who could benefit
from PrEP have received a prescription. PrEP coverage is highest among
white people, at 63.3 percent, yet only 8.2 percent of black people and
14 percent of Hispanic/Latino people who could benefit from PrEP in the
United States are on a prescription. Additionally, PrEP coverage among
women is only at 9.7 percent.
We are thankful that there has been an increased focus on PrEP both
in Congress and from President Biden. In his FY 2023 Budget Request,
President Biden called for a new mandatory funding program to expand
PrEP across the United States through providing medication to un and
under insured individuals, as well as supporting and expanding PrEP
programs across a variety of agencies. Additionally, there is a bill in
Congress seeking to increase insurance coverage of PrEP and ancillary
services (S. 3295) and a bill which seeks to provide grants to HHS
entities to expand PrEP programs throughout the U.S. (H.R. 5605).
As Congress moves through the regular appropriations cycle, we urge
you to support funding for new and innovative programs to expand PrEP
access, and ensure that those who want PrEP can easily access the
medication without any costs or barriers.
Minority HIV/AIDS Initiative (MAI)
Racial and ethnic minorities in the U.S. are disproportionately
impacted by HIV/AIDS. African Americans, more than any other racial/
ethnic group, continue to bear the greatest burden of HIV in the U.S.
Three out of four new HIV infections occur among people of color.
The Minority HIV/AIDS Fund supports cross-agency demonstration
initiatives to support HIV prevention, care and treatment, and outreach
and education activities across the Federal Government. MAI programs at
the Substance Abuse and Mental Health Administration target specific
populations and provide prevention, treatment, and recovery support
services, along with HIV testing and linkage service when appropriate,
for people at risk of mental illness and/or substance abuse. We urge
you fund the Minority HIV/AIDS Fund at $105 million, and SAMHSA's MAI
program at $160 million in FY 2022, an increase of $48.1 million and
$44 million over FY 2021 levels, respectively. We also urge you to fund
Minority AIDS Initiative programs across HHS agencies at $610 million
in FY 2023.
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.
Please do not hesitate to be in touch for more information
regarding HIV appropriations with our Director of Advocacy Drew Gibson,
at [email protected].
Sincerely.
[This statement was submitted by Carl Baloney, Jr., Vice President
& Chief
Advocacy Officer, 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. Due to underlying vulnerabilities, those most at risk of, and
victim to, trafficking and exploitation will experience
disproportionate impacts as a result of COVID-19 in the short, medium,
and long-term. With this in mind, we seek your assistance in funding
essential programs in the fiscal year 2023 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 of
2000 and subsequent reauthorizations (TVPA) and related legislation.
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
department of labor
International Labor Affairs Bureau: $168,000,000.--We request
$168,000,000 for the Bureau of International Labor Affairs (ILAB) in
the Department of Labor (DOL). Specifically, we request $27,000,000 for
the administration of ILAB, $70,000,000 for the Child Labor and Forced
Labor program, $48,000,000 for Workers' Rights Programs, and
$23,000,000 for program evaluation.
ILAB is an essential part of the U.S. government's international
response to forced labor, human trafficking, and child labor. It is
responsible for implementing Section 105(b)(2) of the TVPRA of 2005
(Public Law109-164) and Section 110 of the TVPRA of 2008 (Public
Law110-457). In the past, these requirements have not been funded.
Funding provided would allow ILAB to fulfill its Congressional mandates
including: producing annual findings on worst forms of child labor in
certain U.S. trade beneficiary countries; the development and
maintenance of a list of goods produced by child or forced labor,
including inputs to goods made with child or forced labor; and
increased responsibilities in enforcing the U.S. Mexico Canada
Agreement (USMCA). Adequate funding will ensure that staff is able to
travel to the countries with which ILAB has partnered or where
important research is needed to accurately maintain the list of goods
made with forced labor or child labor. In addition, a robust and
expertly staffed entity within the U.S. government's foreign policy
establishment--that sits outside of the diplomatic constraints of the
State Department and focuses particularly on worker rights--is
tremendously important to the government's ability to tackle human
trafficking and address the underlying factors that place individuals
at risk of trafficking.
We request $48,000,000 for Workers' Rights Programs because they
are essential to maintaining coherence with the U.S. trade agenda. ILAB
provides technical assistance to countries on a variety of worker
rights issues, many of which correspond directly to labor rights
commitments under trade agreements. Project goals include adopting or
reforming labor laws or standards, improving labor inspectorates'
enforcement capacity, increasing awareness of fundamental labor rights,
and improving occupational safety and health conditions. ILAB also
provides technical advice and other support to labor ministries through
workshops and exchange programs and hones in on areas of particular
concern including the cocoa and fishing sectors as well as other supply
chains with heightened risks of child labor or forced labor.
Employment and Training Administration: $5,000,000.--The Department
of Labor Employment and Training Administration (ETA) should conduct a
review of all employment readiness, training, and other discretionary
programs, and revise program guidance as needed to explicitly include
eligibility for trafficking victims where possible, per Sec. 107(b) of
the Trafficking Victims Protection Act (Public Law 106-386). The
requested funds should be used to develop and implement a pilot grant
program to deliver trauma-informed employment and training services
that address particular barriers to service, and challenges to finding
employment, faced by survivors of human trafficking. The U.S Advisory
Council on Human Trafficking highlighted the need to provide access to
employment and training programs to all survivors of human trafficking.
In their inaugural report, released in 2016, the council noted that
``...after leaving their trafficking situations, survivors [...] can
find it difficult to live financially independent. Career development
programs help survivors become self-sufficient and provide for their
families. When survivors are employed, it positively affects their
lives and prevents dependence on public benefits.'' We also recommend
that the DOL integrate 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.
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. ATEST members have also worked
with human trafficking survivors who were forced to engage in criminal
acts of labor, including forced activities related to gangs, weapons
and narcotics. Victims impacted by this form of labor trafficking also
require additional legal services in the realms of criminal law and
immigration.
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):
$50,000,000.--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. Additionally, funding increases for victim services programs
under HHS have never matched the increases provided to programs under
DOJ. Both programs are essential to effectively assist victims and
survivors and we encourage parity in funding for both programs. While
HHS departments have worked efficiently with limited resources to
support service providers, further funding would allow HHS to fulfill
legislated and related needs of victims more fully. 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.
Service providers across the country have noted a significant
increase in the services required by victims and survivors during the
COVID-19 crisis. Data from one ATEST member organization providing
services showed a 556 percent increase in emergency response cases to
escaping survivors since 2019 at the start of the pandemic.
Furthermore, this service provider has experienced a 455 percent
increase in costs for basic necessities. A survey conducted by the OSCE
Office for Democratic Institutions and Human Rights and the United
Nations Entity for Gender Equality and the Empowerment of Women (the
``OSCE ODIHR Survey'') confirms the increased needs of service
providers to effectively assist victims during the pandemic. The crisis
has heightened vulnerabilities to exploitation and required providers
to work with limited resources to provide expanded services. We have
seen unprecedented unemployment rates and significantly heightened
client financial needs in all areas. Both trafficking victims currently
receiving services and those newly seeking services have shown an
increased need for direct assistance to pay for basic necessities like
food and shelter. With the pandemic impacting employment opportunities
in all industries where human trafficking survivors have formerly
sought employment and stability, we expect a significant increase in
the coming years in the need for sustained comprehensive services for
all survivors for longer periods of time. Specifically, data from the
National Human Trafficking Hotline showed that in April 2020, the
number of crisis trafficking situations increased by more than 40
percent and the number of situations in which people needed immediate
emergency shelter nearly doubled. We therefore request an increase in
funds in fiscal year 2023 to $50,000,000, which will help keep up with
the expected needs of trafficking victims and their family members.
Relatedly, we also request that any portion of these funds that
currently operate under a match requirement are exempted from the 25
percent non-federal funding match requirement for fiscal year 2023.
Administration for Children and Families, the National Human
Trafficking Hotline: $6,000,000.--The National Human Trafficking
Hotline (``Trafficking Hotline'') is a toll-free 24/7 center available
to answer calls, text messages, online tips and email queries. The
Trafficking Hotline connects victims with anti-trafficking services in
their area (such as shelter, case management, and legal services),
collects tips on human trafficking cases, and, where appropriate,
reports actionable tips to law enforcement. The Trafficking Hotline
serves both domestic and foreign victims inside the U.S. In fiscal year
2021, the National Human Trafficking Hotline received 13,450 signals
from victims and survivors themselves, a 26 percent increase from
fiscal year 2019. The significant increase in signals from victims and
survivors underscores what an important and trusted resource the
hotline has become for people experiencing trafficking.
As efforts to increase awareness, training, and education of the
public and key industries on human trafficking generally and the
National Human Trafficking Hotline specifically have succeeded, call
volume on the hotline has increased thirty-fold since its inception in
2007. From fiscal year 2019 to fiscal year 2021 the hotline has
experienced a whopping 60 percent increase in total signal volume.
Given the disruptive impact of the COVID-19 pandemic on social,
economic, and health outcomes, call volume will continue to steadily
increase throughout fiscal year 2023 and beyond. We request $6,000,000
in fiscal year 2023 to support the National Human Trafficking Hotline
to continue to meet the needs of victims and survivors of human
trafficking.
Administration for Children and Families, Runaway and Homeless
Youth Act: $300,000,000.--We request a total of $300,000,000 for ACF to
implement the Runaway and Homeless Youth Act (RHYA) programs, Title III
of the Juvenile Justice & Delinquency Prevention Act. This is the
amount to be included in the most recently introduced bill to fully
reauthorize RHYA, the Runaway and Homeless Youth and Trafficking
Prevention Act of 2021. RHYA programs have been chronically underfunded
since its inception, despite these programs costing less than other
systems that many youth experiencing homelessness and survivors of
trafficking encounter. Everyone should have the opportunity to succeed
regardless of their start in life, but young people who are trafficked
and youth experiencing homelessness are not plugged into the networks,
resources, and supports they need for healthy development.
RHYA programs prevent trafficking, identify survivors, and provide
housing and services to runaway, homeless, and disconnected youth. RHYA
has been a necessary bridge for our youth, but more recently, it has
supported us to meet the unprecedented need for safe and stable housing
and supportive services for homeless youth. The COVID-19 pandemic
significantly increased children and youth homelessness due to high
unemployment, unstable living conditions, and job insecurity. Some of
our sites, such as Covenant House Missouri, saw their waiting lists
double.
In a typical year, 4.2 million young people (ages 13-25) experience
homelessness annually, including 700,000 unaccompanied youth ages 13 to
17. Recent data from the National Human Trafficking Hotline also show
that being a runaway homeless youth and living in unstable housing are
two of the top risk factors for human trafficking. Numerous studies
have found trafficking rates among youth experiencing homelessness
ranging from 19 percent to 40 percent. Using the lower end estimate
means that about 800,000 of the youth and young adults who experience
homelessness in a year are also victims of sex trafficking or forced
labor in cities, suburbs, rural communities, and American Indian
Reservations across the country.
The cost of not investing in the lives of youth experiencing
homelessness is an economic burden that affects the young person,
taxpayers, and society. Researchers have found that taxpayers face an
estimated lump sum 2011 fiscal cost per youth of $248,182 and social
cost of $613,182.\1\ Taking the modest taxpayer \2\ cost of $248,182
per youth and applying it to only half of the 4.2 million youth who
experience homelessness every year in America, the taxpayer cost is
over $521 billion (2.1 million x $248,182). Through increased
investments, all youth in need of safe and stable housing and
supportive services will be able to connect to the networks of support
and resources needed to stabilize, heal, and thrive. These connected
youth in turn become part of the solution to trafficking and
homelessness and contribute to the community's well-being.
---------------------------------------------------------------------------
\1\ Foldes, Steven S. and Lubov, Andrea. (2015) The Economic Burden
of Youth Experiencing Homelessness and the Financial Case for Investing
in Interventions to Change Peoples' Lives: An Estimate of the Short-and
Long-Term Costs to Taxpayers and Society in Hennepin County, Minnesota.
https://www.youthlinkmn.org/wp-content/uploads/2016/04/the-economic-
burden-of-homeless-youth-in-hennepin-county.pdf. Social cost is defined
as the total costs to society including lost earnings, lost tax
payments, public crime expenditures, victim costs, welfare support
programs, education, excess tax burden and public housing support.
\2\ Belfield, et. al., The Economic Value of Opportunity Youth.
January 2012.
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RHYA has provided base funding to communities across the country to
develop community-based responses to youth and young adult homelessness
and trafficking. These local systems of care are based on the unique
needs of each region, their available resources, and local priorities.
When we support young people experiencing homelessness, we prevent
trafficking. RHYA programs are also trained in identifying and serving
survivors of trafficking. Specifically, RHYA funds: emergency shelters,
family reunification when safe, aftercare, street outreach, education,
employment training, behavioral and mental health care, transitional
housing, and independent housing options. This support achieves the
following successful outcomes for youth: (1) safe exit from
homelessness and hopelessness; (2) family reunification and/or
establishment of permanent connections in their communities; (3)
education, employment, and sustainable independence; and (4) prevention
of human trafficking. Further, these programs are best positioned to
prevent trafficking and commercial sexual exploitation and provide
early identification of and services to youth victims of crimes.
Proposed Report Language: The Committee strongly encourages
programs to have the ability to serve youth involved in other systems
(such as child welfare and juvenile justice) that are not currently
housed by that system.
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. Additionally,
the ongoing migration flows and refugee crises that swelled in scope
around 2015 and have continued further highlight the need to develop
responsible and robust parameters to ensure that unaccompanied minors
working with ACF and the Office of Refugee Resettlement are not
released to families or guardians who further exploit these vulnerable
youth. Unaccompanied minors released to guardians after being
identified as a victim of or at risk of human trafficking continue to
report to service providers that they are exploited or labor/sex
trafficked by those to whom they were entrusted. We also expect that
the United States may well accept unaccompanied minors from Ukraine
within the next year, and we strongly encourage ACF and ORR to
implement and enforce strong protections for these youth to prevent re-
trafficking or new forms of exploitation.
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. Furthermore, these funds should be used to develop robust
and effective protective mechanisms to ensure that unaccompanied minors
processed through the Office of Refugee Resettlement are not further
exploited or trafficked by the guardians or families to whom they are
entrusted after their release.
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 whether 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: 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.
department of education
Department of Education Grants to Local Education Agencies, Title
I: $2,000,000.--The Department of Education interfaces with
approximately 50 million elementary and secondary school children each
year, placing it in a unique position to identify victims of sex
trafficking and forced labor and to prevent the victimization and
exploitation of children who might be susceptible. While ED has been
able to create some resources for educators without any dedicated
Federal resources, dedicated funding for the prevention of child
trafficking is essential. The funds should be used to develop materials
regarding all forms of human trafficking, including sex trafficking and
forced labor, to ensure that educators and students are aware of how to
identify and address all types of trafficking. Further, we request that
ED publish a white paper examining the appropriate role of educators
and students, as well as the role of the education system, in
preventing, identifying, and supporting child trafficking victims. The
outcome of the white paper should inform the development of a model
curriculum on the prevention of both sex trafficking and forced labor.
McKinney-Vento Act Education for Homeless Children and Youth
Program (EHCY): $300,000,000.--The EHCY removes barriers to the
enrollment, attendance, and opportunity for success for homeless
children and youth; all of whom are at high risk of human trafficking.
The EHCY is effective in addressing youth homelessness. With the
support of EHCY grants, local education agencies have provided
identification, enrollment and transportation assistance, as well as
academic support and referrals for basic services. Unfortunately, the
resources directed to child and youth homelessness programs have not
been sufficient in recent years. ED reported that during the 2017-2018
school year, public schools identified 1.5 million homeless children
and youth, a 15 percent increase over the 3 previous school years.
However, only 22 percent of school districts receive support through
the EHCY in any given year. As a result, homeless children and youth
are under-identified and continue to face significant barriers to
school enrollment and continuity.
Under the McKinney-Vento Act's EHCY, all school districts are
required to designate a homeless liaison, who proactively identifies
homeless children and youth and connects them with vital resources,
including food, housing, and clothing. Because all school districts-
even those in communities without youth shelters-must designate a
liaison for homeless students, schools are uniquely positioned to
identify youth who are being trafficked, or are at risk of being
trafficked, and provide connections to services. Yet many liaisons are
designated in name only and lack the time and the training to carry out
their duties. This lack of capacity is particularly severe in light of
the increase in student homelessness due to the COVID-19 crisis.
Increasing funding for the EHCY will support a dedicated infrastructure
within the Nation's public schools to identify and serve children and
youth who are at very high risk of human trafficking, both during the
current public health and economic crisis and as the economy is
rebuilt.
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 Director Terry FitzPatrick
([email protected]).
Sincerely,
Coalition to Abolish Slavery and Trafficking (CAST)
Coalition of Immokalee Workers (CIW)
Covenant House
Free the Slaves
HEAL Trafficking
Human Trafficking Institute
Human Trafficking Legal Center
Humanity United Action
McCain Institute for International Leadership
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
______
Prepared Statement of the Alpha-1 Foundation
summary of fiscal year 2023 appropriations recommendations
_______________________________________________________________________
--Provide the National Institutes of Health (NIH) with at least $49.
Billion, a $3.5 billion increase over Fiscal Year (FY) 2022.
--Please provide proportional increases for individual NIH
Institutes and Centers especially the National Heart Lung
and Blood Institute (NHLBI) & the National Institute for
Diabetes, Digestive and Kidney Diseases (NIDDK).
--Provide the Centers for Disease Control and Prevention (CDC) with
at least $11 billion, a $2.55 billion increase over FY 2022.
--Please provide CDC's National Center for Chronic Disease
Prevention and Health Promotion (NCCDPHP) with systematic
and meaningful annual increases to bring total funding up
to $3.75 billion over the next 3 years.
_______________________________________________________________________
Thank you for the opportunity to submit testimony on behalf of the
Alpha-1 Foundation. Chairwoman Murray, Ranking Member Blunt, and
distinguished members of the subcommittee, the Alpha-1 community
extends our thanks for the significant investments in HHS through the
FY 2022 omnibus package, particularly the annual increases for the
National Institutes of Health (NIH) and the Centers for Disease Control
and Prevention (CDC). As you work with your colleagues on
appropriations for FY 2023, please continue to invest in medical
research programs that serve the rare disease community. Thank you
again for your leadership on health funding issues and for the
opportunity to present the views of the rare chronic disease community.
about alpha-1 antitrypsin deficiency
Alpha-1 Antitrypsin Deficiency (Alpha-1) is a rare, genetic
condition, passed from parents to their children through their genes.
Alpha-1 may result in serious lung disease in adults and liver disease
at any age. Alpha-1 occurs when there is a severe lack of a protein in
the blood called Alpha-1 antitrypsin (AAT) which is mainly produced by
the liver. The main function of AAT is to protect the lungs from
inflammation caused by infection and inhaled irritants such as tobacco
smoke. The low level of AAT in the blood occurs because the AAT is
abnormal and cannot be released from the liver at a normal rate. This
leads to a buildup of abnormal AAT in the liver that can cause liver
disease.
Alpha-1 lung disease has been called ``Genetic COPD''. Normal white
blood cells in the lungs produce an enzyme called neutrophil elastase
that destroys invading germs and digests damaged or aging cells. In
most people, the alpha-1 protein neutralizes the enzyme after a short
time. In Alpha-1 patients, there is not enough alpha-1 protein in the
lungs; the enzyme then keeps working, attacking and destroying normal
lung tissue. As the damage continues over years, lung diseases such as
COPD can develop.
There is no cure yet for Alpha-1 Antitrypsin Deficiency. However,
there are treatments available for Alpha-1 lung disease. Augmentation
therapy consists of intravenous infusions, usually weekly, of alpha-1
antitrypsin protein purified from healthy plasma donors. The goal is to
increase the level of alpha-1 protein in the blood and lungs to slow or
stop the progression of Alpha-1 lung disease.
Alpha-1 Antitrypsin Deficiency can cause liver problems in infants,
children, and adults. Large amounts of abnormal alpha-1 antitrypsin
protein (AAT) are manufactured in the liver; nearly 85 percent of this
protein gets stuck in the liver. If the liver cannot break down the
abnormal protein, the liver gradually gets damaged and scarred.
Currently, there is no way to prevent the abnormal AAT from getting
stuck in the liver. This highlights the need for additional research at
the National Institutes of Health.
The Alpha-1 Foundation supports the $3.5 billion increase for the
National Institutes of Health being advocated by the Ad Hoc Group for
Medical Research. This additional funding would make possible research
priorities for the Alpha-1 Foundation such as working with NIDDK to
help develop treatments for Alpha-1 Liver Disease since there is no
treatment currently.
home-infusion for alpha-1 patients
This year the Alpha-1 Foundation advocated to Congress regarding
home infusion for the Alpha-1 patient community utilizing Medicare.
Alpha patients with commercial health insurance coverage are allowed to
receive their infusions of augmentation therapy at the home. Whereas
Medicare beneficiaries are mandated to receive their infusions at
infusion clinics, hospitals, and physician offices. With the onset of
the COVID-19 pandemic, it is no longer safe for Alpha-1 Antitrypsin
Deficiency patients to receive their infusions in the clinical setting.
Early in the COVID-19 pandemic, the Alpha-1 Foundation petitioned
the Centers for Medicare and Medicaid Services (CMS) to grant a
temporary home infusion benefit for Alpha-1 patients utilizing coverage
through Medicare. CMS issued a temporary benefit however the specialty
pharmacies would not implement it so the community had to choose
between skipping treatments or potentially exposing themselves to a
fatal respiratory virus.
The Alpha-1 Community is working to create a permeant home infusion
benefit in Medicare Part B by supporting HR 7346, The John Walsh Alpha-
1 Home Infusion Act. The legislation named for the legendary founder of
The Alpha-1 Foundation would establish a permeant benefit in Medicare
Part B. The pandemic has shown that precautions need to be taken to
protect vulnerable populations such as the Alpha-1 Community from
exposure to viruses such as COVID-19 and Influenza.
The Alpha-1 patient community serves as an inspiration to the
leadership of the organization. This year we lost a wonderful Alpha-1
community member, Mr. Rich Lee. Rich Lee was a patient advocate, a
social worker, and a congressional staffer but most importantly he was
a husband and father. Rich passed away on February 13, 2022. Rich spent
his career in service to our community, our state, and our country and
all the lives he touched are better for that service.
Rich served on the staff of our former colleague, Representative
John LaFalce; helping families here in New York through the casework
Rich spearheaded in the district office. The work he did with the
families of the Love Canal environmental disaster was one of his most
important contributions. During his tenure, Rich developed a respect
and love for the House of Representatives as an institution that he
carried and discussed for the rest of his life.
Rich Lee would eventually be diagnosed with Alpha-1 Antitrypsin
Deficiency. Rich Lee was an advocate for increased medical research for
improved treatments and increased access to care for those like himself
who battle this disorder. True to form Rich was working to advocate for
the Alpha-1 community to the end by helping the foundation with the
home infusion legislation. I am honored to acknowledge this life well
lived in service to others.
[This statement was submitted by Scott Santarella, President & CEO,
Alpha-1 Foundation.]
______
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 outside witness testimony on the
Fiscal Year (FY) 2023 appropriations for Alzheimer's and other dementia
research and public health activities at the U.S. Department of Health
and Human Services. Specifically, we respectfully request a $226
million increase for Alzheimer's research at the National Institutes of
Health (NIH) and $30 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).
The Alzheimer's Association is the world's leading voluntary health
organization in Alzheimer's care, support, and research. It 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 is
the advocacy affiliate 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
Alzheimer's is a progressive brain disorder which 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, Alzheimer's is
also creating an enormous strain on the health care system, families,
and Federal and State budgets. The annual cost for all individuals with
Alzheimer's or other dementia will total $321 billion for health care,
long-term care, and hospice care in 2022. The U.S. taxpayer-funded
Federal health care programs Medicare and Medicaid are expected to
cover $206 billion, or 64 percent, of the total health care and long-
term care payments for people with Alzheimer's or other dementias this
year. An estimated 6.5 million Americans aged 65 and older are living
with Alzheimer's in 2022. By 2050, the number of people 65 and older
with Alzheimer's may grow to a projected 12.7 million people. Unless a
treatment to slow, stop, or prevent the disease is developed, in 2050,
Alzheimer's is projected to cost nearly $1 trillion dollars.
Alzheimer's and other dementia threaten to bankrupt families,
businesses, and our health care system.
investing in alzheimer's treatments
Last year, the Food and Drug Administration (FDA) approved the
first treatment for Alzheimer's disease since 2003, and the first to
address the underlying biology of Alzheimer's disease. The FDA
determined there is substantial evidence that aducanumab (marketed as
Aduhelm) reduces amyloid plaques in the brain and that the reduction in
these plaques is reasonably likely to predict important benefits to
patients.
This approval represents an important step forward in Alzheimer's
research. This new treatment, while not a cure, is a pivotal moment in
addressing the disease. This is the first of a number of new treatments
to come. We do recognize the drug may work differently for everyone who
takes it, and may not work for some individuals. Importantly,
aducanumab was studied in and is appropriate for people living with
early Alzheimer's dementia and mild cognitive impairment due to
Alzheimer's who showed evidence of a buildup of amyloid plaques in the
brain. The therapy has not yet been tested on people with more advanced
cases of dementia or Alzheimer's disease.
Years of increased investment provided by Congress to NIH have been
integral to this and other promising therapeutic approaches to treating
Alzheimer's disease. For example, NIH supported basic science
investigations behind the discovery of immunotherapies like aducanumab,
as well as translational research for next-generation immunotherapies.
Additionally, the selection of participants for aducanumab clinical
trials hinged on amyloid PET imaging, a technology that would not exist
today without the publicly-funded research supported by NIH. The
Federal commitment, combined with unprecedented philanthropic support,
provides the foundation for an optimistic view of the future, which is
needed because there is much work to be done.
This is just the beginning of meaningful treatment advances.
History has shown us that approvals of the first drug in a new category
invigorates the field, increases investments in new treatments, and
encourages greater innovation. We are hopeful that this drug is just
the beginning for better treatments to come. Looking at the big picture
of science, there is a crucial need for effective treatment options for
diverse populations living in all stages of Alzheimer's. Alzheimer's
must be addressed through multiple pathways--more than just amyloid--
with an eye toward effective combination therapies, pharmacological and
nonpharmacological, that work at different stages of the disease.
While recent NIH funding increases have laid the foundation for
breakthroughs in diagnosis, treatment, and prevention, and enabled
significant advances in understanding the complexities of Alzheimer's,
there is still much left to be done. We cannot leave any stone
unturned. Investment in Alzheimer's research is only a fraction of
what's been applied over time, with great success, 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 build upon
promising research advances. An increase of $226 million in Alzheimer's
research at NIH in FY 2023 would enable scientists to conduct more
inclusive, efficient, and practical clinical trials; increase knowledge
of risk and protective factors in individuals and across diverse
populations; discover better biomarkers to detect disease and monitor
treatment response; pursue a precision medicine approach to detect the
disease earlier and tailor treatment plans to an individual's unique
symptoms and risk profile; and leverage emerging digital technologies
and big data to speed discoveries. We need to continue to increase
investment in Alzheimer's and dementia research to maximize every
opportunity for success.
addressing alzheimer's as a public health crisis
As scientists continue to search for ways to cure, treat, or slow
the progression of Alzheimer's through medical research, public health
plays a critical role in promoting cognitive function and reducing the
risk of cognitive decline. Now more than ever it is apparent how
crucial it is to have an established infrastructure in place to respond
to public health threats.
In 2018, Congress acted decisively to address Alzheimer's as an
urgent and growing public health threat through the passage of the
bipartisan BOLD Act. This law authorizes $100 million over 5 years for
CDC to build a robust Alzheimer's public health infrastructure across
the country focused on public health actions that can allow individuals
with Alzheimer's to live in their homes longer and delay costly long-
term nursing home care. Congress appropriated $10 million for the first
year of BOLD's implementation in FY 2020, which allowed CDC to award
funding to three Public Health Centers of Excellence (PHCOE), focused
on risk reduction, caregiving, and early detection, and 16 public
health departments across the country. These State, local, and Tribal
public health department recipients are creating statewide dementia
coalitions, hiring dementia coordinators, and developing or updating
Alzheimer's and other dementia strategic plans. The $15 million
Congress appropriated for the second year of BOLD's implementation in
FY 2021 helped fund additional public health departments and expand the
impact of this crucial work into more communities across the country.
In FY 2022, Congress appropriated $25 million dollars for continuing
its support for BOLD implementation, and will further enable the public
health agencies to expand their activities.
The Alzheimer's Association is grateful to be leading the Dementia
Risk Reduction PHCOE, focusing on community-level actions to reduce the
risk of developing Alzheimer's and other dementia. Researchers are
increasingly studying the impact that lifestyle behaviors may have on
the risk of developing Alzheimer's and other dementia. The future of
reducing Alzheimer's could be in treating the whole person with a
combination of drugs and modifiable risk factor interventions, as we do
now with heart disease. The Center works with public health agencies on
addressing social determinants of health with respect to dementia risk;
capacity building to enable smaller public health agencies to engage in
dementia risk reduction activities; and partnering with health systems
in their communities to advance risk reduction.
Over 65 percent of American adults have at least one risk factor
for dementia. Although risk factors like age, genetics, and family
history cannot be changed, other risk factors can be modified to reduce
the risk of cognitive decline and dementia. Examples of modifiable risk
factors are physical activity, smoking, education, staying socially and
mentally active, blood pressure, and diet. In fact, the 2020
recommendations of The Lancet Commission on dementia prevention,
intervention, and care suggest that addressing modifiable risk factors
might prevent or delay up to 40 percent of dementia cases.
The Alzheimer's Association is currently leading a 5-year clinical
trial to evaluate a 2-year intervention to see whether lifestyle
interventions that simultaneously target multiple risk factors can
protect cognitive function in older adults at increased risk for
cognitive decline. The U.S. Study to Protect Brain Health Through
Lifestyle Intervention to Reduce Risk (U.S. POINTER) will evaluate the
effects of lifestyle interventions, like physical exercise, a healthier
diet, cognitive and social stimulation, and self-management of heart
and vascular health, on changes in cognitive function. It is crucial
that forthcoming findings from studies like U.S. POINTER are translated
into public health interventions across the country. Investing now in a
robust public health infrastructure ensures cutting edge research can
be effectively and efficiently disseminated into local communities.
While these BOLD implementation efforts are important steps
forward, and we are grateful to this subcommittee and Congress for the
initial funding, CDC must receive the $30 million authorized in the law
for FY 2023 to ensure the meaningful impact that Congress intended. The
Alzheimer's Association and AIM urge Congress to include the full $30
million for the third year of BOLD's implementation at CDC in FY 2023.
Activities supported by the requested $30 million in FY 2023 would
enable CDC to expand the number of State, local, and Tribal public
health departments across the country that receive funding for
Alzheimer's public health activities. Finally, as Alzheimer's is one of
the most prevalent chronic diseases facing our Nation, we look forward
to the day that the subcommittee and CDC elevate Alzheimer's and other
dementia to the Division level as with other major chronic diseases.
conclusion
The Alzheimer's Association and AIM appreciate the steadfast
support of the subcommittee and its priority setting activities. We
urge the subcommittee and Congress to provide an additional $226
million for Alzheimer's research activities at NIH and $30 million for
full implementation of the BOLD Infrastructure for Alzheimer's Act at
CDC in FY 2023.
______
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 2023 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: $30 million for Pediatric Subspecialty Loan
Repayment (HRSA), $60 million for Firearm Injury and Mortality
Prevention Research (CDC/NIH), $14 million for Pediatric Mental Health
Care Access Grants (HRSA), $28.134 million for Emergency Medical
Services for Children (HRSA), $205 million for the National Center for
Birth Defects and Developmental Disabilities (CDC), $356 million for
Global Immunizations (CDC), $12 million for implementation of
Scarlett's Sunshine Act (CDC/HRSA), $26.2 million for the
administrative component of the National Vaccine Injury Compensation
Program (HRSA), and $15 million for provisions in the Vaccine Awareness
Campaign to Champion Immunization Nationally and Enhance Safety
(VACCINES) Act (CDC).
Pediatric Subspecialty Loan Repayment Program (HRSA):
FY 23 Request: $30 million; FY 22 Level: $5 million.--The AAP
appreciates first-time funding of $5 million in FY22 for the Pediatric
Subspecialty Loan Repayment Program, a Title VII health professions
program designed to improve access to care for children with special
health care needs by offering loan repayment to pediatric
subspecialists and child mental health providers who agree to serve in
an underserved area. To expand the number of beneficiaries of this
program, the Academy respectfully requests $30 million in FY23. The
United States' current 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. Spotlighting the needs of children
with autism spectrum disorder (ASD), as an example, there are
approximately 1.5 million children with ASD but there are only about
700 practicing board-certified developmental-behavioral pediatricians.
The national wait time for a pediatric developmental evaluation is 5.4
months. In terms of equity, ASD prevalence among Hispanic children is
about 16 percent lower than among white and black children, which
suggests that more Hispanic children with autism are not being
identified. In addition, black children with ASD are significantly less
likely than white children to have a first evaluation by the age of
three.
Firearm Injury and Mortality Prevention Research (CDC/NIH):
FY 23 Request: $60 million total; FY 22 Level: $25 million total.--
The AAP is tremendously appreciative of and applauds Congress for
continuing to provide $25 million total, split evenly between CDC and
NIH, for firearm injury and mortality prevention research in fiscal
Year22. Gun violence remains a public health problem, but the dearth of
research on how best to prevent firearm-related morbidity and mortality
makes it difficult to address it. Federally funded public health
research has a proven track record of reducing public health-related
deaths, whether from motor vehicle crashes or smoking. This same
approach should be applied to increasing gun safety and reducing
firearm-related injuries and deaths, including suicides, and continuing
and expanding CDC and NIH research will be critical to that effort. As
such, for FY23, the Academy urges Congress to allocate $60 million for
firearm injury and mortality prevention research, with $35 million
dedicated to CDC and $25 million to NIH.
Pediatric Mental Health Care Access Grants (HRSA):
FY 23 Request: $14 million; FY 22 Level: $11 million.--The AAP
appreciates the support Congress has shown for Pediatric Mental Health
Care Access Grants, with $11 million in funding for the program in
FY22, as well as robust funding in the American Rescue Plan in
recognition of the impact of COVID-19 on child and adolescent mental
health. The 45 States, Tribal organizations, and territories who are
receiving grants through this program are providing tele-consultation,
training, technical assistance, and care coordination for pediatric
primary care providers to diagnose, treat and refer children with
behavioral health conditions. Research shows pervasive shortages of
child and adolescent mental/behavioral health specialists throughout
the United States. Integrating mental health and primary care has been
shown to substantially expand access to mental health care, improve
health and functional outcomes, increase satisfaction with care, and
achieve costs savings. In fact, a recent RAND study found that 12.3
percent of children in States with programs such as the ones funded
under this HRSA program had received behavioral health services while
only 9.5 percent of children in States without such programs received
these services. In FY23, the AAP urges Congress to provide $14 million
in funding for Pediatric Mental Health Care Access Grants so that his
proven program can be extended to every State, Tribal organization, and
territory.
Emergency Medical Services for Children (HRSA):
FY 2023 Request: $28.134 million; FY 22 Level: $22.334 million.--
The AAP urges the committee to increase funding for the Emergency
Medical Services for Children (EMSC) Program to $28.134 million in
fiscal Year23. 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. An additional $5.8 million in funding in FY23 will allow the
program to provide increased funding to States to address gaps in
children's access to high quality emergency and trauma care as well to
support States building mental health capacity for children in
emergency departments.
National Center for Birth Defects and Developmental Disabilities (CDC):
FY 23 Request: $205 million; FY 22 Level: $177.06 million.--The AAP
requests $205 million for fiscal Year23 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, as well as COVID-19.
Increased FY23 funding would be used to build upon and expand work
within the Center's priorities such as uniform data collection for
neonatal abstinence syndrome; supporting the act Early: Children's
Mental Health program, data collection around sickle cell disease, and
expansion of the Surveillance for Emerging Threats to Mothers and
Babies (SET-NET) program to allow more States to participate and gather
needed information to protect pregnant individuals and infants from
emerging public health threats.
Global Immunization--Polio and Measles/Other (CDC):
FY 23 Request: $356 million ($276 million for Polio and $80 million
for Measles/Other); FY 22 Level: $228 million ($178 million for Polio
and $50 million for Measles/Other).--The CDC's global immunization
program is one of the most cost-effective and successful public health
solutions available and U.S. investments have driven remarkable
results. The CDC was a founding member of the Measles and Rubella
Initiative, which has vaccinated over 2 billion children and prevented
23.2 million deaths from measles since 2001. Since 1988, the CDC's
global polio immunization work has reduced the number of polio cases
globally by 99.9 percent, saving more than 10 million children from
paralysis and bringing the disease close to eradication. Thanks to
sustained funding by the U.S. government through the CDC and USAID and
the coordinated efforts of the Global Polio Eradication Initiative
(GPEI), the opportunity for a polio-free world is within reach.
Unfortunately, the gains from global immunization are in jeopardy.
Throughout the ongoing COVID-19 pandemic, many countries diverted
resources set aside for polio and routine immunizations to fight the
pandemic. While this was vital to many countries' ability to quickly
respond to COVID-19, it has come at a terrible cost to polio
eradication and routine child vaccination. In the first 2 months of
2022, measles cases were up 79 percent compared with the year prior.
The World Health Organization and UNICEF warned of a ``perfect storm''
of conditions for measles outbreaks. Additionally, polio cases have
increased, with Malawi experiencing its first wild polio case in three
decades. To recover from pandemic-related disruptions, the Academy
urges Congress to appropriate at least $276 million for polio and $80
million for measles vaccination programs.
Activities Authorized under Scarlett's Sunshine Act (CDC/HRSA):
FY 23 Request: $12 million ($8.5 million at CDC for the Safe
Motherhood and Infant Health account and $3.5 million at MCHB within
the Special Projects of Regional and National Significance account); FY
22: Level: $1 million at HRSA and $2 million at CDC.--In passing the
Scarlett's Sunshine Act in late 2020, Congress recognized the need for
Federal investments in research and prevention of sudden unexpected
infant death (SUID) and sudden unexplained death in childhood (SUDC).
The law authorized $12 million for HHS to award grants and improve data
and monitoring. Full funding for this initiative will strengthen
efforts to better understand SUID and SUDC, facilitate data collection
and analysis to improve prevention efforts, and support children and
families. Requested CDC funding would improve communities' responses to
infant and child death cases, inform prevention and clinical care, and
help standardize data collection and reporting, as well as procedures
and protocols for death scene investigations and autopsies. The grants
can also fund safe sleep outreach efforts, which can reduce the risk of
SUID. The funds at MCHB would support the expansion and use of the Case
Reporting System to provide data summaries and dashboards on all SUIDs
and making datasets available to researchers. These MCHB funds can also
support bereavement services for affected families, which MCHB cannot
currently provide.
National Vaccine Injury Compensation Program Administration (HRSA):
FY 23 Request: $26.2 million; FY 22 Level: $13.2 million.--The
Academy supports increased funding for the administrative component of
the National Vaccine Injury Compensation Program (NVICP), which was
established in 1988 to ensure an adequate supply of vaccines, stabilize
vaccine costs, and establish and maintain an accessible and efficient
forum for individuals found to be injured by certain vaccines. NVICP is
an alternative to the traditional tort system for resolving vaccine
injury claims and provides compensation to individuals found to be
injured by certain vaccines. NVICP claims have increased more than
fivefold from 402 claims filed in FY 2012 to 2,057 claims filed in FY
2021 while the administrative funding barely doubled from $6.5 million
to $11.2 million during the same period. The steep increase in claims
filed is due in large part to the flu vaccine being administered to
adults. In fact, most of all petitions filed are now adult claims for
alleged injuries from the flu vaccine. Though the number of petitions
has risen, the number of staff to administer the claims has not risen
at the same level. By hiring more staff and thereby expediting the
processing of claims filed in the NVICP, the children and families who
have been injured by a vaccine will be able to receive their due
compensation in a timely manner. It will also help prepare HRSA to
administer the NVICP program if the COVID-19 vaccine is eventually
transferred from the Countermeasures Injury Compensation Program and
included in NVICP program.
Activities Authorized under the VACCINES Act (CDC):
FY 23 Request: $15 million; FY 22 Level: N/A.--The AAP is very
appreciative that Congress specifically included the Vaccine Awareness
Campaign to Champion Immunization Nationally and Enhance Safety
(VACCINES) Act as part of Section 2302 of the American Rescue Plan that
provided $1 billion to improve vaccine confidence for both COVID-19 and
routine immunizations. Much of this funding was distributed to State
and local public health departments to help promote the uptake of
COVID-19 vaccines and to provide Americans with accurate information
about these vaccines. As we pass 2 years of living through the
pandemic, it is more important than ever to bolster American's
confidence in vaccines and debunk misinformation and disinformation
about vaccines. The VACCINES Act authorizes the development of a
national vaccination rate surveillance system at CDC and allows data
collected to be used to identify communities with low vaccination
utilization or where vaccine misinformation may be targeted. It also
authorizes research grants to better understand vaccine hesitancy,
attitudes towards vaccines, and develop strategies to address
nonadherence to the recommended use of vaccines. Additionally, the
VACCINES Act authorizes an evidence-based public awareness campaign on
the importance of vaccinations to increase vaccination rates, including
targeting communities that have particularly low vaccination levels.
The AAP urges Congress to allocate the authorized $15 million for CDC
to ensure these activities take place to boost vaccine confidence in
routine and COVID-19 immunizations and boost vaccination rates across
the lifespan.
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 FY 2023 and beyond. If we may be of
further assistance, please contact the AAP Department of Federal
Affairs at 202-347-8600 or [email protected]. Thank you for your
consideration.
[This statement was submitted by Moira A. Szilagyi, MD, FAAP,
President,
American Academy of Pediatrics.]
______
Prepared Statement of the American Association
for the Study of Liver Diseases
The American Association for the Study of Liver Diseases (AASLD)
thanks this subcommittee for the opportunity to submit outside witness
testimony on opportunities to support and improve the health of
Americans living with various forms of liver disease, ranging from non-
alcoholic fatty liver disease to liver cancer, in the Fiscal Year
(FY)2023 Labor, Health and Human Services, Education and Related
Agencies bill and report.
The liver, the largest solid organ in the body, is a master
regulator of a diverse array of life sustaining chemical processes. In
liver disease, these processes are disrupted. The result is ongoing
organ injury, progressive scarring, and the development of cirrhosis
and liver cancer. Over 40,000 Americans die each year from these
complications. In 2019, liver disease was the fourth leading cause of
death for those 45 to 64 years of age, and that figure continues to
grow. AASLD is calling on this subcommittee to support biomedical
research and public health programs to reverse the growing public
health burden of liver disease. We respectfully request that you
provide at least $49.048 billion for the National Institutes of Health
(NIH) and $140 million for the Centers for Disease Control and
Prevention (CDC) Division of Viral Hepatitis (DVH).
funding for nih
Robust, sustained, and predictable funding is important to advance
the entire biomedical research enterprise, not just work related to the
full spectrum of liver diseases. AASLD is deeply appreciative of the
investment Congress has made to provide NIH with the resources for
meaningful growth above inflation, and our request of $49.048 billion
will ensure this trajectory can be maintained and meritorious research
in liver disease will be supported.
To meaningfully advance our understanding of liver diseases, all
NIH Institutes and Centers (I/Cs) must receive a proportional increase
in funding in FY 2023. Many I/Cs support the research our members
perform, reinforcing the importance of providing a proportional
increase across the NIH: the National Cancer Institute supports
research in liver cancer, one of the most lethal cancers; the National
Institute of Allergy and Infectious Diseases-funded projects are
advancing our understanding of viral hepatitis and helping us move
closer to its elimination; and the National Institute of Alcohol Abuse
and Alcoholism (NIAAA) is funding projects to address the growing
burden of alcohol-associated liver disease. AASLD would like to stress
the importance of the National Institute of Diabetes and Digestive and
Kidney Diseases (NIDDK), the home for liver disease research, receiving
at least a proportional increase to NIH. Unlike many other I/Cs, NIDDK
did not receive any emergency COVID-19 funding, yet it supports many
chronic conditions such as liver disease that increase a person's risk
for severe COVID-19 and long COVID. The institute is already being
forced to make difficult choices about funding COVID-19 related
research and other research areas, which will only be exacerbated by
receiving an increase that is not proportional to the broader NIH.
Additionally, we are requesting this robust appropriation for NIH to
provide for meaningful support of a diverse physician-scientist
workforce. AASLD is concerned that the physician-scientist workforce is
shrinking at a time when their expertise is needed to meet the needs of
Americans living with liver diseases, especially as COVID-19 continues
to pose an increased risk for these patients.
AASLD would also like to take this opportunity to address the
Advanced Research Projects Agency for Health (ARPA-H). The $49.048
billion we are requesting for NIH should be separate from any
appropriation made to ARPA-H in FY 2023; any funds appropriated to
ARPA-H should supplement, not supplant, those for NIH. AASLD strongly
supports and believes in the potential for ARPA-H to meaningfully
improve the health of Americans living with liver disease by developing
new tools to treat and potentially prevent these conditions. However,
this work cannot be done at the expense of the basic science and
investigator-initiated research in which NIH invests; AASLD strongly
believes the best way to support both lines of inquiry is for Congress
to authorize ARPA-H so that is housed outside of NIH.
appropriate $140 million for cdc dvh to support the
elimination of viral hepatitis
AASLD is committed to meeting the goal of eliminating viral
hepatitis. We have vaccines to prevent Hepatitis A and Hepatitis B, and
while we may not have a Hepatitis C vaccine, we now have the
therapeutics to cure those infected. However, vaccines and effective
therapeutics alone cannot move the country towards elimination;
therefore, we urge Congress to provide the investment necessary to
support this goal. The overall CDC budget has decreased in real dollars
several times in the last decade. Despite recent pandemic-related
investments across the agency, funding for DVH has remained relatively
flat, leaving the Division unable to support the policies and programs
necessary to bolster efforts towards the elimination of viral
hepatitis. We therefore urge you to appropriate $140 million for DVH as
a down payment on progress towards elimination.
We recognize that this request represents a $99 million increase in
DVH's funding, yet it does not come close to providing the funding that
the CDC estimated would be required to put the United States on the
path to eliminating viral hepatitis. In its 2016 Professional Judgement
Budget, the CDC estimated it would take at least $316 million to do
this. There is a critical need to enhance the capacity to detect and
respond to outbreaks. Increased funding for DVH is also critically
important to support adult vaccination programs for Hepatitis A and
Hepatitis B and address the ongoing opioid epidemic, which has been
exacerbated by the COVID-19 pandemic.
support the formation of a national liver disease strategy
The burden of liver disease is growing rapidly, imposing
significant costs to the country's public health and health care
systems. For example, liver cancer has emerged as one of the fastest
rising causes of cancer deaths in the country, and with a forecasted
40,000 new liver cancer diagnoses and 30,000 liver cancer deaths in
2022, survival rates remain poor. Additionally, at least 5.3 million
Americans are infected with viral hepatitis and the majority are
undiagnosed while the disease destroys their liver.
Despite the growing toll the full spectrum of liver diseases is
imposing, there is no strategy to address the breadth of the health and
economic effects of this disease in the United States. For these
reasons, AASLD calls on Congress to direct the Department of Health and
Human Services (HHS) to develop a department-wide strategic plan to
combat liver disease, including viral hepatitis, fatty liver disease,
alcohol-associated liver disease, cirrhosis, and liver cancer. HHS
should seek input from across the government, including from the CDC,
the NIH, the Food and Drug Administration, and the Health Resources and
Services Administration (HRSA), as well as researchers, providers, and
patients to formulate this strategy.
Accordingly, the AASLD requests the inclusion of the following
language in the report accompanying the FY 2023 LHHS Appropriations
bill with regards to the HHS Office of the Secretary:
National Liver Disease Strategy.--The Committee recognizes the
growing burden of liver disease, including viral hepatitis, non-
alcoholic fatty liver disease, cirrhosis, and liver cancer, and its
significant costs to the country's health care system. In 2019, liver
disease was the fourth leading cause of death for those 45 to 64 years
of age. Despite the growing toll the full spectrum of liver diseases is
imposing, there is no strategy to address the breadth of the health and
economic effects of this disease in the United States. For these
reasons, the Committee directs the Secretary of HHS to develop a
department-wide strategic plan to combat liver disease. This strategy
should include a framework to guide the development of policies and
initiatives to prevent, diagnose, and treat liver disease across
Federal agencies. Specifically, the strategy should coordinate efforts
to prevent future cases of liver disease through improved disease
surveillance and improve liver disease outcomes for current patients by
addressing health disparities and inequities. The Committee provides $2
million to support this effort and requests an update on the
department's plans to begin this work within 180-days of enactment.
support universal hepatitis b vaccination
Hepatitis B is a highly infectious disease with an estimated 20,700
acute infections each year, and almost two million people are living
with chronic hepatitis B in the US today. Today, some parts of the
country, particularly those States most affected by the opioid
epidemic, are experiencing sharp increases in infections. The hepatitis
B virus can lead to serious complications, such as liver failure,
cirrhosis, and liver cancer.
For these reasons, the AASLD was pleased to see the CDC Advisory
Committee on Immunization Practices (ACIP) recommendation for universal
hepatitis B vaccination for adults aged 19 to 59. CDC will be formally
supporting this recommendation in a forthcoming edition of the
Morbidity and Mortality Weekly Report. This is a key step towards
eliminating this vaccine-preventable and treatable disease. As such, we
respectfully request the inclusion of the following report language in
the report that accompanies the FY 2023 LHHS appropriations bill under
the HHS Office of the Secretary:
Universal Hepatitis B Vaccination.--The Committee believes the
Centers for Disease Control and Prevention's Advisory Committee on
Immunization Practices (ACIP) recommendation for universal hepatitis B
vaccination for adults aged 19 to 59 is a crucial step towards the
elimination of this vaccine-preventable virus. It comes as parts of the
country, particularly those States most affected by the opioid
epidemic, are experiencing sharp increases in hepatitis B infections.
The Committee requests a report back on the specific steps being taken
to implement this recommendation across the agency and departments,
including but not limited to the CDC Division of Viral Hepatitis, the
CDC Immunization Services Divisions, and the HRSA Health Center
Program, and any barriers that have been encountered and assistance
needed to overcome them within 120 days of enactment.
advance research on alcohol-associated liver disease
Alcohol-associated liver disease (ALD) represents a wide-range of
liver injury resulting from alcohol use, including inflammation of the
liver, cirrhosis, or permanent scarring of the liver, and other life-
threatening complications. ALD is a major cause of liver disease and
research advancements in this area are urgently needed, particularly
due to the increased rates of alcohol consumption during the COVID-19
pandemic. Preliminary data indicate a significant increase in alcohol
consumption during the pandemic, and increased alcohol use has the
potential to increase morbidity and mortality from ALD. Moreover, early
data suggest that patients with ALD may experience worse COVID-19
outcomes and complications. For these reasons, AASLD believes this area
of research could benefit from a more comprehensive approach to
research on ALD and alcohol use disorders at the NIH. Therefore, the
AASLD respectfully requests that you include the following report
language in the report that accompanies the FY 2023 LHHS appropriations
bill under the NIH NIAAA:
Alcohol-Associated Liver Disease.--The Committee is aware that
alcohol use disorder and alcohol-associated liver disease are distinct
diseases. However, it is rare for patients to have the latter without
first having the former. Combining the research in this area in a
holistic approach could lead to advancements for both, which are needed
urgently given the increased rates of alcohol consumption during the
pandemic. The Committee requests a report in next year's budget
justification on the viability of this approach, including NIAAA's
capacity to award related grants and the field's capacity to develop
scientifically valid research projects.
conclusion
Thank you again for the opportunity to submit testimony to the
Committee as you begin your work on the FY 2023 appropriations bills.
We look forward to working with you to improve the health and well-
being of all Americas living with liver disease.
______
Prepared Statement of the American Association for Cancer Research
Chair Murray, Ranking Member Blunt, and members of the
subcommittee, thank you for the opportunity to submit testimony. I am
Dr. Lisa Coussens, Associate Director for Basic Research at the Knight
Cancer Institute, an NCI Comprehensive Cancer Center, and Chair of the
Department of Cell, Developmental & Cancer Biology at Oregon Health &
Science University. I am submitting testimony as President of the
American Association for Cancer Research (AACR), the world's first and
largest professional organization dedicated to advancing cancer
research and its mission to prevent and cure all cancers. On behalf of
the AACR's more than 50,000 members, who are scientists, physicians,
other healthcare workers, and patient advocates, I ask for your support
for at least $49 billion in Fiscal Year (FY) 2023 funding for the
National Institutes of Health (NIH) and $7.766 billion for the National
Cancer Institute (NCI).
The AACR is grateful for your commitment to cancer research and the
increase of $353 million Congress provided NCI in FY 2022. Today, as
you begin work on FY 2023 appropriations, I humbly ask that you build
on that support and address the urgent financial pressures at NCI.
History shows what can be achieved when Congress prioritizes
medical research. After years of underinvestment, former President
Clinton embarked on a path of doubling NIH funding, a goal which
Congress far exceeded. In 1999, success rates, i.e., the percent of
research grant applications that receive funding, reached 32 percent
across NIH and 28 percent at NCI. The NCI Director at the time, Dr.
Richard D. Klausner, referred to this era as ``a golden age of
discovery, one unique in human history.'' This funding fueled
discoveries at an unprecedented rate.
Thanks to these investments, truly remarkable progress has been
made. For example, treating late-stage lung cancer and melanoma has
been revolutionized with the development of a new class of
immunotherapies that activate a patient's own immune system to fight
cancer. In the 1990s and early 2000s, fewer than 1 in 6 patients
diagnosed with metastatic melanoma lived 5 years after diagnosis. But
now more than half of patients with metastatic melanoma who receive
immunotherapy combinations live longer than 5 years, many without any
signs of disease. These remarkable new therapies emerged out of Federal
investments in basic science.
And as a result, we see similar results playing out for the
millions of Americans who otherwise might have lost their lives to
cancer, as there are now nearly 17 million cancer survivors living in
the United States. In the 50 years since the enactment of the National
Cancer Act, cancer mortality rates have dropped by 27 percent. These
drastic reductions are due to prevention efforts such as reduced
smoking rates, more effective screening tools which detect cancer at an
earlier, more treatable stage, and the success of better, more targeted
drugs that allow patients with cancer to live longer after a diagnosis.
These developments and therapies would not have been possible without
decades of basic research funded by NCI and NIH to understand the
causes and development of cancer, the immune system, and how cancer
cells evade detection.
Researchers are building on these discoveries to find additional
anti-cancer drug targets within the immune system and to understand why
some tumors do not respond as well to treatment. We are so close to
unlocking new discoveries that could fundamentally change cancer care
and survivorship, but to do so, we need Federal investments to keep up
with the growing demands on basic research for cancer.
The cancer research community's ability to understand, detect, and
treat cancers is exploding with potential. Between 2013 and 2018, NCI
witnessed a nearly 46 percent increase in grant applications, dwarfing
the increase of other institutes at NIH which only increased by 4.9
percent. And yet, NCI funding has not kept up with application growth
or inflation. Even with the significant funding provided by Congress,
NCI's success rate in FY 2021 was only 13 percent, less than half the
rate that spurred historic success two decades ago. NCI's success rate
is also among the lowest of all institutes at NIH. Currently, less than
one-in-seven grant applications are approved, leaving well-reviewed
science unfunded and jeopardizing our ability to spur further
innovative approaches to cancer science. This extremely low funding
rate is not only limiting scientific discovery, but it is also having
an adverse impact on the financial and career security of cancer
scientists, in particular, early-stage researchers who may be forced to
choose other, more secure career paths.
By meeting the NCI professional judgment budget level of $7.766
billion in FY 2023, NCI can invest in more early-stage researchers,
increase the availability of research grants, and accelerate the path
to discoveries that will save lives. While financial constraints at NCI
pre-date the emergence of COVID-19, the pandemic has exacerbated
challenges within the cancer research community by closing
laboratories, disrupting the implementation of clinical trials, and
contributing to hiring freezes, forced staff turnovers, and delays and
shortages of supplies. Many of these activities are yet to fully
recover.
In addition, we do not yet know the full scope of what COVID-19
will mean for patients who delayed their cancer screenings, many of
whom will be diagnosed with later stage disease that will be harder and
costlier to treat. Former NCI Director, Dr. Norman ``Ned'' Sharpless,
estimated that COVID-19 could result in 5,000 to 10,000 excess cancer
deaths from breast cancer and colorectal cancer alone in the next
decade due to delayed cancer screenings and medical appointments. The
NCI's work will be crucial in rebuilding cancer science and ensuring
that we emerge from this crisis with better tools to assist patients
navigating a cancer diagnosis.
Throughout my career, some truths about cancer have become
abundantly clear. Cancer does not care where you live, or whether you
are rich or poor. It forces a tremendous economic and social impact
regardless of whom it touches. But with investments in medical
research, it is my goal that one day, even advanced cancers will be
treated as a chronic condition that a person can control and live with,
but one that will not ultimately take their life. We have the power to
achieve this goal within our grasp. Now is the time to put our foot on
the gas and accelerate discoveries. We do not have a moment to spare.
Thank you for the opportunity to submit testimony on behalf of the
AACR and for your commitment to bringing us closer to our mutual goal
of conquering cancer.
[This statement was submitted by Lisa M Coussens, MD (hc), PhD,
FAACR, President, American Association for Cancer Research.]
______
Prepared Statement of the American Association for Dental, Oral, and
Craniofacial Research
Chair Murray, Ranking Member Blunt, and members of the
subcommittee, thank you for the opportunity to submit this testimony on
behalf of the American Association for Dental, Oral, and Craniofacial
Research (AADOCR). I am pleased to submit this statement describing
AADOCR's funding requests for FY 2023. I currently serve as President
of the Association. I am also a professor and former dean at the
University of North Carolina-Chapel Hill Adams School of Dentistry and
an adjunct professor at UNC's Gillings School of Global Public Health.
For FY 2023, AADOCR--along with our colleagues in the oral health
community--is seeking at least $540 million for the National Institute
of Dental and Craniofacial Research (NIDCR) and a total of $49 billion
for all of the Institutes and Centers at the National Institutes of
Health (NIH). Funding at these levels is necessary for the entities'
base budgets to keep pace with the biomedical research and development
price index (BRDPI).
The NIH, through the biomedical research it conducts and supports,
plays a critical role in improving Americans' health and well-being.
When the COVID-19 pandemic hit our Nation and the world, the NIH helped
safeguard the public health through its significant contributions to
the development of testing, vaccines and treatments. The NIH continues
to develop and maintain the resources, both human and scientific, that
provide our Nation with the tools it needs to address other diseases
and disabilities.
The NIDCR, established by President Harry S. Truman in 1948, is the
largest institution in the world exclusively dedicated to researching
ways to improve dental, oral, and craniofacial health for all.
Investments in NIDCR-funded research during the past half-century have
led to improvements in oral health for millions of Americans and
continue to show promise in areas encompassing the prevention of dental
caries (cavities) and periodontal disease (gum disease), new diagnostic
methods of oral and dental conditions, pain biology and management,
regenerative medicine, oral cancer, and in assessing the efficacy of a
human papillomavirus (HPV) vaccine for oral and pharyngeal cancers.
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. Poor oral health can
affect activities that may be taken for granted--the ability to eat,
drink, swallow, smile, speak, and maintain proper nutrition--and create
economic burden that disproportionately harms older adults, low income,
and underserved communities.
The oral cavity also serves as a window into many health issues,
including but not limited to systemic diseases, such as diabetes, HIV/
AIDS, and Sjogren's, an autoimmune disease that causes one's immune
system to attack parts of its own body. Additionally, researchers are
exploring the debilitating loss of salivary gland functioning and
saliva production stemming from radiation treatment for head and neck
cancers and even from common medications and aging itself.
The NIDCR played a critical role in responding to the COVID-19
public health crisis funding approximately $3.9 million in high-impact
coronavirus research. The Institute's research into minimizing
infection risk in dental offices, the use of biosensors to detect SARS-
CoV-2 in saliva, the role of periodontal disease in COVID-19
complications, and exploring mechanisms of viral entry into the tissues
of the oral cavity played a critical role in combatting COVID-19.
Continued investment in NIDCR will allow the Institute to pursue these
research efforts and expand into new areas of research, such as the
interplay between the oral microbiome and immune system, to improve
Americans' oral and overall health.
In December 2021, NIDCR released ``Oral Health in America: Advances
and Challenges'', a data-driven report with input from over 400
contributors documenting 20 years of progress in oral health since the
2020 Surgeon General's Report on Oral Health. The report provides
insight into issues currently affecting oral health and serves as a
call to action for a coordinated effort among oral health
practitioners; researchers; and other stakeholders to improve oral
health for all Americans.
AADOCR deeply appreciates Congress' longstanding and bipartisan
support for the public health research enterprise. The funding
increases NIDCR has received since 2015 have allowed the Institute to
build its data repository and registry in several disease and research
areas to meet the increasing need for open-source data sharing. These
include clinical registries and repositories related to head and neck
cancers, orofacial birth defects and craniofacial anomalies, and
craniofacial microsomia cohorts to identify genetic risk factors. The
Institute also participates in trans-NIH and NIH Common Fund
initiatives for data analysis and sharing.
Despite NIDCR's impressive research agenda and scientific
accomplishments, the Federal Government's annual investment in the
Institute has not kept pace with the overall funding increases provided
to NIH over the past several years. Funding of at least $540 million in
FY 2023 would help bring NIDCR funding into alignment with the overall
NIH appropriation and allow NIDCR to build on its myriad successes in
its mission to improve dental, oral and craniofacial health.
Recognizing that Federal research and public health efforts work in
concert with one another and that success in one area can benefit
another, we encourage Congress to support the full breadth of Federal
agencies supporting oral health. Complementing our NIDCR and NIH
requests, we urge you to provide $35 million for the CDC's Division of
Oral Health, $46 million for the Title VII Health Resources and
Services Administration (HRSA) programs that train the dental health
workforce, $500 million for the Agency for Healthcare Research and
Quality (AHRQ), and $210 million for the National Center for Health
Statistics (NCHS) in FY 2023.
Finally, AADOCR strongly supports the establishment of the Advanced
Research Projects Agency for Health (ARPA-H), which will help fill gaps
in the biomedical research ecosystem by utilizing a bold new approach
focused on the development of evidence-based, real-world-driven cures
for a range of diseases. We urge you to support the Administration's
request of $5 billion for ARPA-H in FY 2023, but not at the expense of
funding for the NIH's base budget. It's critical that funding for this
new agency complement--not supplant--the foundational investment in
traditional NIH Institutes and Centers.
We appreciate the opportunity to submit this testimony and thank
the subcommittee for its support of biomedical research, including
dental, oral and craniofacial research, in FY 2023 so our Nation's
citizens can continue to enjoy the benefits of state-of-the-art and
world-leading health care. We stand ready to assist the members of this
subcommittee in any way we can and are happy to answer any questions
you may have.
Sincerely.
[This statement was submitted by Jane Weintraub, DDS, MPH,
President (2022-2023), American Association for Dental, Oral, and
Craniofacial Research.]
______
Prepared Statement of the American Association for the Study of Liver
Diseases
The American Association for the Study of Liver Diseases (AASLD)
thanks this subcommittee for the opportunity to submit outside witness
testimony on opportunities to support and improve the health of
Americans living with various forms of liver disease, ranging from non-
alcoholic fatty liver disease to liver cancer, in the Fiscal Year (FY)
2023 Labor, Health and Human Services, Education and Related Agencies
bill and report.
The liver, the largest solid organ in the body, is a master
regulator of a diverse array of life sustaining chemical processes. In
liver disease, these processes are disrupted. The result is ongoing
organ injury, progressive scarring, and the development of cirrhosis
and liver cancer. Over 40,000 Americans die each year from these
complications. In 2019, liver disease was the fourth leading cause of
death for those 45 to 64 years of age, and that figure continues to
grow. AASLD is calling on this subcommittee to support biomedical
research and public health programs to reverse the growing public
health burden of liver disease. We respectfully request that you
provide at least $49.048 billion for the National Institutes of Health
(NIH) and $140 million for the Centers for Disease Control and
Prevention (CDC) Division of Viral Hepatitis (DVH).
funding for nih
Robust, sustained, and predictable funding is important to advance
the entire biomedical research enterprise, not just work related to the
full spectrum of liver diseases. AASLD is deeply appreciative of the
investment Congress has made to provide NIH with the resources for
meaningful growth above inflation, and our request of $49.048 billion
will ensure this trajectory can be maintained and meritorious research
in liver disease will be supported.
To meaningfully advance our understanding of liver diseases, all
NIH Institutes and Centers (I/Cs) must receive a proportional increase
in funding in FY 2023. Many I/Cs support the research our members
perform, reinforcing the importance of providing a proportional
increase across the NIH: the National Cancer Institute supports
research in liver cancer, one of the most lethal cancers; the National
Institute of Allergy and Infectious Diseases-funded projects are
advancing our understanding of viral hepatitis and helping us move
closer to its elimination; and the National Institute of Alcohol Abuse
and Alcoholism (NIAAA) is funding projects to address the growing
burden of alcohol-associated liver disease. AASLD would like to stress
the importance of the National Institute of Diabetes and Digestive and
Kidney Diseases (NIDDK), the home for liver disease research, receiving
at least a proportional increase to NIH. Unlike many other I/Cs, NIDDK
did not receive any emergency COVID-19 funding, yet it supports many
chronic conditions such as liver disease that increase a person's risk
for severe COVID-19 and long COVID. The institute is already being
forced to make difficult choices about funding COVID-19 related
research and other research areas, which will only be exacerbated by
receiving an increase that is not proportional to the broader NIH.
Additionally, we are requesting this robust appropriation for NIH to
provide for meaningful support of a diverse physician-scientist
workforce. AASLD is concerned that the physician-scientist workforce is
shrinking at a time when their expertise is needed to meet the needs of
Americans living with liver diseases, especially as COVID-19 continues
to pose an increased risk for these patients.
AASLD would also like to take this opportunity to address the
Advanced Research Projects Agency for Health (ARPA-H). The $49.048
billion we are requesting for NIH should be separate from any
appropriation made to ARPA-H in FY 2023; any funds appropriated to
ARPA-H should supplement, not supplant, those for NIH. AASLD strongly
supports and believes in the potential for ARPA-H to meaningfully
improve the health of Americans living with liver disease by developing
new tools to treat and potentially prevent these conditions. However,
this work cannot be done at the expense of the basic science and
investigator-initiated research in which NIH invests; AASLD strongly
believes the best way to support both lines of inquiry is for Congress
to authorize ARPA-H so that is housed outside of NIH.
appropriate $140 million for cdc dvh to support the elimination of
viral hepatitis
AASLD is committed to meeting the goal of eliminating viral
hepatitis. We have vaccines to prevent Hepatitis A and Hepatitis B, and
while we may not have a Hepatitis C vaccine, we now have the
therapeutics to cure those infected. However, vaccines and effective
therapeutics alone cannot move the country towards elimination;
therefore, we urge Congress to provide the investment necessary to
support this goal. The overall CDC budget has decreased in real dollars
several times in the last decade. Despite recent pandemic-related
investments across the agency, funding for DVH has remained relatively
flat, leaving the Division unable to support the policies and programs
necessary to bolster efforts towards the elimination of viral
hepatitis. We therefore urge you to appropriate $140 million for DVH as
a down payment on progress towards elimination.
We recognize that this request represents a $99 million increase in
DVH's funding, yet it does not come close to providing the funding that
the CDC estimated would be required to put the United States on the
path to eliminating viral hepatitis. In its 2016 Professional Judgement
Budget, the CDC estimated it would take at least $316 million to do
this. There is a critical need to enhance the capacity to detect and
respond to outbreaks. Increased funding for DVH is also critically
important to support adult vaccination programs for Hepatitis A and
Hepatitis B and address the ongoing opioid epidemic, which has been
exacerbated by the COVID-19 pandemic.
support the formation of a national liver disease strategy
The burden of liver disease is growing rapidly, imposing
significant costs to the country's public health and health care
systems. For example, liver cancer has emerged as one of the fastest
rising causes of cancer deaths in the country, and with a forecasted
40,000 new liver cancer diagnoses and 30,000 liver cancer deaths in
2022, survival rates remain poor. Additionally, at least 5.3 million
Americans are infected with viral hepatitis and the majority are
undiagnosed while the disease destroys their liver.
Despite the growing toll the full spectrum of liver diseases is
imposing, there is no strategy to address the breadth of the health and
economic effects of this disease in the United States. For these
reasons, AASLD calls on Congress to direct the Department of Health and
Human Services (HHS) to develop a department-wide strategic plan to
combat liver disease, including viral hepatitis, fatty liver disease,
alcohol-associated liver disease, cirrhosis, and liver cancer. HHS
should seek input from across the government, including from the CDC,
the NIH, the Food and Drug Administration, and the Health Resources and
Services Administration (HRSA), as well as researchers, providers, and
patients to formulate this strategy.
Accordingly, the AASLD requests the inclusion of the following
language in the report accompanying the FY 2023 LHHS Appropriations
bill with regards to the HHS Office of the Secretary:
National Liver Disease Strategy.--The Committee recognizes the
growing burden of liver disease, including viral hepatitis,
non-alcoholic fatty liver disease, cirrhosis, and liver cancer,
and its significant costs to the country's health care system.
In 2019, liver disease was the fourth leading cause of death
for those 45 to 64 years of age. Despite the growing toll the
full spectrum of liver diseases is imposing, there is no
strategy to address the breadth of the health and economic
effects of this disease in the United States. For these
reasons, the Committee directs the Secretary of HHS to develop
a department-wide strategic plan to combat liver disease. This
strategy should include a framework to guide the development of
policies and initiatives to prevent, diagnose, and treat liver
disease across Federal agencies. Specifically, the strategy
should coordinate efforts to prevent future cases of liver
disease through improved disease surveillance and improve liver
disease outcomes for current patients by addressing health
disparities and inequities. The Committee provides $2 million
to support this effort and requests an update on the
department's plans to begin this work within 180-days of
enactment.
support universal hepatitis b vaccination
Hepatitis B is a highly infectious disease with an estimated 20,700
acute infections each year, and almost two million people are living
with chronic hepatitis B in the US today. Today, some parts of the
country, particularly those States most affected by the opioid
epidemic, are experiencing sharp increases in infections. The hepatitis
B virus can lead to serious complications, such as liver failure,
cirrhosis, and liver cancer.
For these reasons, the AASLD was pleased to see the CDC Advisory
Committee on Immunization Practices (ACIP) recommendation for universal
hepatitis B vaccination for adults aged 19 to 59. CDC will be formally
supporting this recommendation in a forthcoming edition of the
Morbidity and Mortality Weekly Report. This is a key step towards
eliminating this vaccine-preventable and treatable disease. As such, we
respectfully request the inclusion of the following report language in
the report that accompanies the FY 2023 LHHS appropriations bill under
the HHS Office of the Secretary:
Universal Hepatitis B Vaccination.--The Committee believes the
Centers for Disease Control and Prevention's Advisory Committee
on Immunization Practices (ACIP) recommendation for universal
hepatitis B vaccination for adults aged 19 to 59 is a crucial
step towards the elimination of this vaccine-preventable virus.
It comes as parts of the country, particularly those States
most affected by the opioid epidemic, are experiencing sharp
increases in hepatitis B infections. The Committee requests a
report back on the specific steps being taken to implement this
recommendation across the agency and departments, including but
not limited to the CDC Division of Viral Hepatitis, the CDC
Immunization Services Divisions, and the HRSA Health Center
Program, and any barriers that have been encountered and
assistance needed to overcome them within 120 days of
enactment.
advance research on alcohol-associated liver disease
Alcohol-associated liver disease (ALD) represents a wide-range of
liver injury resulting from alcohol use, including inflammation of the
liver, cirrhosis, or permanent scarring of the liver, and other life-
threatening complications. ALD is a major cause of liver disease and
research advancements in this area are urgently needed, particularly
due to the increased rates of alcohol consumption during the COVID-19
pandemic. Preliminary data indicate a significant increase in alcohol
consumption during the pandemic, and increased alcohol use has the
potential to increase morbidity and mortality from ALD. Moreover, early
data suggest that patients with ALD may experience worse COVID-19
outcomes and complications. For these reasons, AASLD believes this area
of research could benefit from a more comprehensive approach to
research on ALD and alcohol use disorders at the NIH. Therefore, the
AASLD respectfully requests that you include the following report
language in the report that accompanies the FY 2023 LHHS appropriations
bill under the NIH NIAAA:
Alcohol-Associated Liver Disease.--The Committee is aware that
alcohol use disorder and alcohol-associated liver disease are
distinct diseases. However, it is rare for patients to have the
latter without first having the former. Combining the research
in this area in a holistic approach could lead to advancements
for both, which are needed urgently given the increased rates
of alcohol consumption during the pandemic. The Committee
requests a report in next year's budget justification on the
viability of this approach, including NIAAA's capacity to award
related grants and the field's capacity to develop
scientifically valid research projects.
conclusion
Thank you again for the opportunity to submit testimony to the
Committee as you begin your work on the FY 2023 appropriations bills.
We look forward to working with you to improve the health and well-
being of all Americas living with liver disease.
______
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, especially during this unprecedented time. As the
National voice for academic nursing, AACN represents more than 850
schools of nursing at private and public universities, who educate more
than 565,000 students and employ more than 52,000 faculty.\1\
Collectively, these institutions graduate our Nation's registered
nurses (RN), advanced practice registered nurses (APRN), educators,
researchers, and frontline providers.
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\1\ American Association of Colleges of Nursing. (2022) Who We Are.
Retrieved from: https://www.aacnnursing.org/About-AACN/Who-We-Are.
---------------------------------------------------------------------------
As we work to combat current public health challenges, such as
COVID-19, and prepare for the future, ensuring a robust nursing pathway
requires a strong and sustained Federal investment. For Fiscal Year
(FY) 2023, AACN respectfully requests that you provide support of at
least $530 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 and at least $210 million for the National
Institute of Nursing Research (NINR).
Landscape Overview: The Growing Nursing Workforce Demand
Nurses comprise the largest sector of the healthcare workforce,
with more than four million RNs and APRNs, which include Nurse
Practitioners (NPs), Certified Registered Nurse Anesthetists (CRNAs),
Certified Nurse-Midwives (CNMs), and Clinical Nurse Specialists
(CNSs).\2\ Nurse educators, students, and practitioners are leaders
within their institutions and communities; many of whom are also
serving on the frontlines of this public health emergency.
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\2\ National Council of State Boards of Nursing. (2021). Active RN
Licenses: A profile of nursing licensure in the U.S. as of April 23,
2021. Retrieved from: https://www.ncsbn.org/6161.htm.
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From the classroom to the frontline, we have witnessed how critical
a well-educated nursing workforce is to the provision of high-quality
health care. This need is only expected to grow, as the Bureau of Labor
Statistics projects a 9 percent increase in RN workforce demand through
2030, representing the need for an additional 276,800 jobs.\3\ Demand
for certain APRNs (NPs, CRNAs, and CNMs) is expected to grow even more,
by 45 percent.\4\
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\3\ U.S. Bureau of Labor Statistics. (2022). Occupational Outlook
Handbook- Registered Nurses. Retrieved from: https://www.bls.gov/ooh/
healthcare/registered-nurses.htm.
\4\ U.S. Bureau of Labor Statistics. (2022). 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 AACN saw student enrollment in entry-level baccalaureate
nursing programs increase by 3.3 percent in 2021, the increase was 2.3
percent lower than 2020.\5\ Further, nursing schools saw enrollment
decline in baccalaureate degree-completion programs and some graduate
programs at the master's and PhD levels.\6\ For the first time since
2001, enrollment in master's programs decreased by 3.8 percent, which
translates to 5,766 fewer students enrolled in 2021 than in the
previous year.\7\ This is concerning because graduate programs prepare
individuals for a variety of advanced roles in administration,
teaching, research, informatics, and direct patient care.
---------------------------------------------------------------------------
\5\ American Association of Colleges of Nursing. (2022) Nursing
Schools See Enrollment Increases in Entry-Level Programs, Signaling
Strong Interest in Nursing Careers. Retrieved from: https://
www.aacnnursing.org/News-Information/PressReleases/View/ArticleId/
25183/Nursing-Schools-See-Enrollment-Increases-in-Entry-Level-Programs.
\6\ Ibid.
\7\ Ibid.
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There were bright spots in 2021, with enrollments in Doctor of
Nursing Practice (DNP) programs up 4.0 percent.\8\ However, the fact
remains that a total of 91,938 qualified applications (not applicants)
were not accepted at schools of nursing nationwide in 2021 alone.\9\ As
our annual survey found, ``the primary barriers to accepting all
qualified students at nursing schools continues to be insufficient
clinical placement sites, faculty, preceptors, and classroom space, as
well as budget cuts.'' \10\
---------------------------------------------------------------------------
\8\ Ibid.
\9\ Ibid.
\10\ Ibid.
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Educational pathways are just one piece of the puzzle. Strong and
historic investments in the current nursing workforce are imperative,
especially as we contend with an aging nursing workforce and the
lasting impact COVID-19 has had on the profession. In fact, registered
nurses age 65 and older already make up 19 percent of the workforce,
and ``more than one-fifth of all nurses reported they plan to retire
from nursing over the next 5 years.'' \11\ Not to mention a recent
study which found 52 percent of nurses considered leaving their
position during the pandemic, up from 40 percent a year earlier.\12\ We
must minimize the loss of experienced nurses who may prematurely leave
the profession, and at the same time support nursing education to meet
the current and future demand for nurses.
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\11\ National Council of State Boards of Nursing and the National
Forum of State Nursing Workforce Centers (2021) The 2020 National
Nursing Workforce Survey. Retrieved from: https://
www.journalofnursingregulation.com/article/S21558256(21)00027-2/
fulltext.
\12\ American Nurses Foundation. (2022). Pulse on the Nation's
Nurses Survey Series: COVID-19 Two-Year Impact Assessment Survey.
Retrieved from: https://www.nursingworld.org/ 492857/contentassets/
872ebb13c63f44f6b11a1bd0c74907c9/covid-19-2-year-impact-assessment-
written-report-final.pdf.
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With increasing demands, an aging population, nursing retirements,
and an increase in workplace stress,\13\ bold investments in Title VIII
Nursing Workforce Development Programs and NINR are imperative, not
only as we confront existing health challenges, but as we provide
tomorrow's equitable and innovative healthcare solutions.
---------------------------------------------------------------------------
\13\ American Association of Colleges of Nursing. (2020) Fact
Sheet: Nursing Shortage. Retrieved from: https://www.aacnnursing.org/
Portals/42/News/Factsheets/Nursing-Shortage-Factsheet.pdf.
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Investments in Nursing Education Lead to a Strong Nursing Workforce
For over fifty years, Title VIII Nursing Workforce Development
Programs have been a catalyst for strengthening nursing education at
all levels, from entry-level preparation through graduate study.
Through grants, scholarships, and loan repayment programs, Title VIII
Federal investments positively impact the profession's ability to serve
America's patients in all areas, bolster diversity within the
workforce, and increase the number of nurses, including those at the
forefront of public health emergencies and caring for our aging
population.
Each Title VIII Nursing Workforce Development Program provides a
unique and crucial mission to support nursing education and the
profession. For example, the Advanced Nursing Education (ANE) programs
help increase the number of APRNs in the primary care workforce and
supported more than 8,800 students in Academic Year 2020-2021
alone.\14\ In addition, the Nurse Faculty Loan Program (NFLP) supported
2,763 graduate nursing students who intend to serve as nurse
faculty.\15\ ``By the end of the Academic Year, the programs graduated
779 trainees, 92 percent of whom intended to teach nursing.'' \16\
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\14\ Health Resources and Services Administration. Fiscal Year 2023
Budget Justification. Pages 164-170. Retrieved from: https://
www.hrsa.gov/sites/default/files/hrsa/about/budget/budget-
justification-fy2023.pdf.
\15\ Health Resources and Services Administration. Fiscal Year 2023
Budget Justification. Page 181. Retrieved from: https://www.hrsa.gov/
sites/default/files/hrsa/about/budget/budget-justification-fy2023.pdf.
\16\ Ibid.
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As we address social determinants of health and work to build an
equitable healthcare system for all patients, it is imperative that we
recruit individuals from diverse backgrounds into the nursing
profession. Increasing diversity in the profession will not only create
lifelong career pathways, but will also improve care quality and access
to population-centered care. A recent HHS Assistant Secretary for
Planning and Evaluation (ASPE) report makes the recommendation to
``optimize existing workforce development programs to support diversity
in the health professional workforce and further support the
development of a diverse workforce though pipeline programs.'' \17\ The
Nursing Workforce Diversity (NWD) program serves as a glowing example
of a successful Title VIII initiative that accomplishes this goal. In
fact, in Academic Year 2020-2021, the NWD program awarded grants
supporting 10,155 nursing students from disadvantaged backgrounds.\18\
To ensure the stability of our nursing workforce now and in the future,
we request at least $530 million for Title VIII Nursing Workforce
Programs in FY 2023.
---------------------------------------------------------------------------
\17\ Assistant Secretary for Planning and Evaluation, Office of
Health Policy. Impact of the COVID-19 Pandemic on the Hospital and
Outpatient Clinician Workforce Challenges and policy responses. (2022)
Retrieved from: https://aspe.hhs.gov/sites/default/files/documents/
9cc72124abd9ea25d58a22c7692dccb6/aspe-covid-workforce-report.pdf.
\18\ Health Resources and Services Administration. Fiscal Year 2023
Budget Justification. Pages 171-174. Retrieved from: https://
www.hrsa.gov/sites/default/files/hrsa/about/budget/budget-
justification-fy2023.pdf.
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From Research to Reality: Nursing Science Protects Americans' Health
AACN recognizes that scientific research and discovery are the
foundation on which nursing practice is built and is essential to
advancing evidence-based interventions, informing policy, and
sustaining the health of the Nation. In fact, a recent ASPE's report
recommends to ``support research that investigates long-term workforce
trends arising from the pandemic and how they can be addressed
including entry and departure issues, impact on facility staffing, and
factors associated with health worker morale.'' \19\
---------------------------------------------------------------------------
\19\ Assistant Secretary for Planning and Evaluation, Office of
Health Policy. Impact of the COVID-19 Pandemic on the Hospital and
Outpatient Clinician Workforce Challenges and policy responses. (2022)
Retrieved from: https://aspe.hhs.gov/sites/default/files/documents/
9cc72124abd9ea25d58a22c7692dccb6/aspe-covid-workforce-report.pdf.
---------------------------------------------------------------------------
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. In
fact, 80 percent of research-focused educational training grants at
nursing schools are funded by NINR.\20\ Through these grants and
others, nurse scientists, often working collaboratively with other
health professionals, are generating groundbreaking findings and
leading translation research that works to address strategic
imperatives, to include health equity, social determinants of health,
population health, health promotion, and models of care. To further
this vital work, we are requesting a total of at least $210 million for
the National Institute of Nursing Research.
---------------------------------------------------------------------------
\20\ Journal of Professional Nursing (2019) National Institute of
Health (NIH) funding patterns in Schools of Nursing: Who is funding
nursing science research and who is conducting research at Schools of
Nursing? Retrieved from https://www.sciencedirect.com/science/article/
abs/pii/S8755722319301164?via=ihub.
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conclusion
Strong investments in Title VIII Nursing Workforce Development
Programs and NINR have a direct impact on sustaining pathways into
nursing and patient access to high-quality, evidence-based care in all
communities across the Nation. During these unprecedented times, AACN
respectfully requests support in FY 2023 of at least $530 million for
the Title VIII Nursing Workforce Development Programs and at least $210
million for the National Institute of Nursing Research. Together, we
can ensure that such investments promote innovation and improve health
care in America.
[This statement was submitted by Cynthia McCurren, PhD, RN, 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) appreciates the opportunity to highlight priorities for the
osteopathic medical education (OME) community in the LHHSE fiscal year
(FY) 2023 budget.
AACOM advocates for the full continuum of OME to improve the health
of the public. Founded in 1898 to support and assist the Nation's
osteopathic medical schools, AACOM represents all 38 accredited
colleges of osteopathic medicine (COMs)--educating nearly 34,000 future
physicians, 25 percent of all U.S. medical students--at 60 teaching
locations in 34 U.S. States, as well as osteopathic graduate medical
education professionals and trainees at U.S. medical centers,
hospitals, clinics and health systems.
AACOM supports FY23 funding for the following priority programs:
--$49 billion for the National Institutes of Health (NIH)
--$11 billion for the Centers for Disease Control and Prevention
--$9.8 billion for discretionary Health Resources and Services
Administration
--$1.51 billion for the PHSA Title VII and Title VIII health
professions workforce programs
--$500 million for Teaching Health Center Graduate Medical Education
--$500 million for the Agency for Healthcare Research and Quality
--$375 million for Children's Hospital Graduate Medical Education
--$210 million for discretionary National Health Service Corps
Scholarship and Loan Repayment programs
--$75 million for the Medical Student Education Program
--$67 million for the Area Health Education Center Program
--$59 million for the Primary Care Training and Enhancement Program
--Permanent funding for the Rural Residency Planning and Development
Program
Osteopathic medicine plays an essential role in our Nation's
healthcare delivery system and is the fastest growing medical field in
the country according to the U.S. Bureau of Health Professions.
Osteopathic physicians are trained to see the body as a unit of
interdependent systems which promotes healing through a dynamic
interaction of body, mind, and spirit. DOs have expertise in the
musculoskeletal system, receiving extensive training in osteopathic
manipulative treatment, a hands-on technique and non-pharmacological
solution to pain management.
AACOM is concerned that scientists at osteopathic medical schools
are underutilized in NIH research and underrepresented on NIH Advisory
Councils and study sections. The Joint Explanatory Statement
accompanying the Consolidated Appropriations Act, 2022 (Public Law 117-
103) highlighted this concern and requires NIH to report on the status
of NIH funding to colleges of osteopathic medicine and the
representation of DOs on NIH National Advisory Councils and study
sections. We thank you for acknowledging this disparity and urge the
subcommittee to ensure swift implementation.
If this disparity in funding and representation continues, NIH will
miss a key opportunity to bolster its capacity to address some of the
Nation's most pressing health threats. COMs have a commitment to
serving rural and underserved communities: 58 percent are located in
Health Professional Shortage Areas and almost all schools have a
mission to address these populations. Moreover, nearly 40 percent of
physicians practicing in medically-underserved areas are DOs. They
serve as the backbone of the primary care system with more than half of
DOs practicing in primary care specialties. Finally, COMs routinely
train osteopathic medical students in community-based settings, which
aligns with the U.S. Department of Health and Human Services Initiative
to Strengthen Primary Health Care. Maintaining a focus on this issue
will benefit the public by ensuring increased NIH research on these
disadvantaged populations.
AACOM appreciates the opportunity to share our LHHSE FY23 funding
priorities 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 American Association of Immunologists
The American Association of Immunologists (AAI), the Nation's
largest professional association 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 (FY) 2023 appropriations for the
National Institutes of Health (NIH). AAI recommends an appropriation of
at least $49 billion for NIH's base budget for FY 2023. In addition,
AAI recommends providing substantial funding for the Advanced Research
Projects Agency for Health (ARPA-H), though it is crucial that this
funding supplements, and does not supplant, NIH's base budget. Robust
investment in NIH will support needed research to prevent and treat
dangerous infectious and debilitating chronic diseases, fund
meritorious research proposals and scientists at all career stages, and
ensure the continuity of our Nation's robust, preeminent biomedical
research enterprise. Because the COVID-19 pandemic continues, AAI also
strongly supports an infusion of supplemental funds to address ongoing
COVID-19 needs, help scientists whose work was adversely impacted by
pandemic-related interruptions, and prepare for future pandemics.
how investment in immunological research transformed the covid-19
response
Immunological research, including understanding how vaccine-induced
immunity and memory are formed, has been vital to the development and
use of safe and effective vaccines to protect against coronavirus
disease 2019 (COVID-19). While the current vaccines against severe
acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the virus that
causes COVID-19, continue to provide strong protection against severe
disease, hospitalization, and death, the emergence of variants like
delta have resulted in surges of infections, leading to significant
morbidity and mortality and placing great strain on our health care
system. Although the latest variants (omicron and its subvariants)
spread much more easily, they have generally caused less serious
disease. Nevertheless, we must be vigilant and prepared for new
variants and continue to invest significantly in research aimed at
understanding the immune response to the virus and whether--and when--
these new variants are able to evade vaccine-induced immunity.
As a result of three substantial coronavirus outbreaks across the
globe [SARS, Middle East respiratory syndrome (MERS), and COVID-19] in
the last two decades, scientists are working to discover new approaches
for vaccinating against coronaviruses. One such approach currently
being explored by NIH is the development of universal coronavirus
(``pan-coronavirus'') vaccines that could protect against these and
other types of coronaviruses and viral variants.\1\ Another approach
that shows great promise is an intranasal vaccine, currently being
tested against COVID-19. Delivering the vaccine intranasally could
generate robust mucosal immunity at the site of infection, potentially
resulting in long-term protection from infection. There are over a
dozen intranasal vaccine candidates in various stages of clinical
trials; preliminary data from one recent preclinical study showed the
potential utility of using an intranasal vaccine as a booster dose to
our current COVID-19 vaccines to induce long lasting, protective immune
responses.\2\
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\1\ https://www.nih.gov/news-events/news-releases/niaid-issues-new-
awards-fund-pan-coronavirus-vaccines.
\2\ https://www.nytimes.com/2022/02/02/health/covid-vaccine-
nasal.html.
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Advances have also been made in the development of effective
treatments for active COVID-19. Various therapeutics are now available
to those who test positive for COVID-19, often preventing the
development of serious disease. In other areas, treatment is lacking.
There are few therapeutics available for those who experience post-
acute sequelae of SARS-CoV-2 (PASC, or ``long COVID''), a chronic
condition that can affect almost every part of the body and
incapacitate individuals who have recovered from initial infection.
While research is ongoing, particularly through the NIH Researching
COVID to Enhance Recovery (RECOVER) Initiative,\3\ there is currently
limited understanding of what causes long COVID and why only some
patients develop the condition. Some individuals, even those who had
mild infections, experience lingering health problems that can severely
limit their activity for months. More research is needed to investigate
the cause and pathology of long COVID and discover treatments for this
enigmatic and often debilitating condition.
---------------------------------------------------------------------------
\3\ https://recovercovid.org/.
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other important vaccine advances
Malaria: Every year, malaria infects millions and kills hundreds of
thousands of vulnerable people around the world, in particular young
children living in poor countries with inadequate health systems. The
development of the first World Health Organization (WHO)-recommended
vaccine for malaria represents a major scientific advance with the
potential to significantly improve health outcomes and was the result
of decades of basic research funded in part by NIH.\4\ In addition, an
NIH-funded phase 1 clinical trial found that a novel monoclonal
antibody conferred unprecedentedly high levels of durable protection
against malaria.\5\
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\4\ https://www.nih.gov/news-events/news-releases/investigational-
malaria-vaccine-gives-strong-lasting-protection; https://
www.ncbi.nlm.nih.gov/pmc/articles/PMC7227679/.
\5\ https://www.nih.gov/news-events/nih-research-matters/
monoclonal-antibody-prevents-malaria-early-trial.
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Influenza: The Centers for Disease Control and Prevention (CDC)
estimates that influenza has caused between 9 and 41 million
infections, 140,000 and 710,000 hospitalizations, and 12,000 and 52,000
deaths each year in the United States over the last decade.\6\ Annual
vaccination is currently the most effective way to prevent illness due
to flu; however, these vaccines must be updated annually and their
ability to protect against infection varies widely from year to year
due to seasonal shifts in the type of influenza viruses that circulate.
NIH is currently supporting research to develop new types of vaccines,
including universal flu vaccines (currently in phase 1 clinical
studies), that would protect more broadly and effectively against
multiple strains of flu, including newly emerging strains that pose a
pandemic risk.\7\
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\6\ https://www.cdc.gov/flu/about/burden/index.html.
\7\ https://www.niaid.nih.gov/news-events/nih-launches-clinical-
trial-universal-influenza-vaccine-candidate.
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Tuberculosis (TB): In 2020, 10 million people were infected with,
and 1.5 million people died from, TB.\8\ Although TB is the second
leading infectious cause of death in the world, the only available
vaccine against TB is the BCG (Bacillus Calmette-Guerin) vaccine, which
has variable efficacy against pulmonary disease. NIH-supported research
is seeking to understand how the TB bacterium interacts with its human
host. Recently, NIH-funded researchers identified a method to
dramatically improve the efficacy of the BCG vaccine in non-human
primates by changing the route of administration.\9\
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\8\ https://www.who.int/news-room/fact-sheets/detail/tuberculosis.
\9\ https://www.nih.gov/news-events/news-releases/changed-route-
immunization-dramatically-improves-efficacy-tb-vaccine.
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Opioid Use Disorder: The opioid epidemic has devastated families
and communities across America, with 1.6 million people diagnosed with
opioid use disorder and more than 70,000 people dying from opioid-
related overdoses in the past year alone.\10\ NIH is currently funding
cutting-edge research seeking to prevent addiction by generating
antibodies to block opioid molecules from entering the brain and by
developing a vaccine that could combat opioid use disorder.\11\
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\10\ https://www.hhs.gov/opioids/about-the-epidemic/index.html.
\11\ https://heal.nih.gov/news/stories/OUD-vaccine; https://
www.gao.gov/assets/gao-19-706sp.pdf.
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Alzheimer's Disease: Alzheimer's disease, which afflicts more than
six million Americans, is a devastating illness that deprives its
victims of their lifelong memories and ultimately destroys their brain
function.\12\ NIH-funded basic research has revealed how the immune
system can contribute to the formation of amyloid plaques in the brains
of Alzheimer's patients, causing irreversible neuronal damage.
Currently, there are multiple novel vaccine candidates, all currently
in different stages of clinical studies, that aim to prevent
Alzheimer's disease from ever developing.\13\
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\12\ https://www.nia.nih.gov/health/alzheimers-disease-fact-sheet.
\13\ https://www.beingpatient.com/there-are-9-alzheimers-vaccines-
in-trials-right-now/.
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immunology and other diseases, including cancer
While immunology has been in the news because of its extraordinary
role in understanding and combatting COVID-19, critically important
immunological research continues--and is advancing--in many other
areas. Research on the immune system is improving our understanding of
how to treat chronic conditions such as multiple sclerosis and
cardiovascular disease; how to ensure successful organ or tissue
transplantation; and how to protect against natural or man-made agents
of bioterrorism.
Cancer research is also advancing, as immunologists have been able
to effectively leverage the immune system's ability to recognize and
eliminate tumor cells into treatments called immunotherapies.
Scientists continue to unravel the complicated interaction between
immune cells and cancer, with the hope that this will lead to the
discovery of effective new cancer treatments. Recently, the Food and
Drug Administration (FDA) approved the first KRAS inhibitor (sotorasib)
to treat advanced KRAS G12C-mutant non-small cell lung cancer (NSCLC),
which accounts for 82 percent of all lung cancer cases.\14\ With lung
cancer one of the three most common cancers diagnosed in U.S. adults,
and with mutations to the KRAS gene one of the most common genetic
alterations observed in NSCLC, this approval marks a major breakthrough
in oncology.\15\
---------------------------------------------------------------------------
\14\ https://www.cancer.net/cancer-types/lung-cancer-non-small-
cell/statistics.
\15\ https://www.cancer.gov/news-events/cancer-currents-blog/2021/
fda-sotorasib-lung-cancer-kras.
---------------------------------------------------------------------------
the role of a robust nih in the nation's biomedical research enterprise
The nation's major funding agency for biomedical research, NIH is
also a key source of economic activity in every U.S. state and in
countries around the world. More than 80 percent of its $45 billion
budget is distributed, following a competitive peer review process, to
more than 300,000 researchers at more than 2,500 universities, medical
schools, and other research institutions across the Nation,\16\ while
approximately 10 percent of its budget supports 6,000 researchers and
clinicians who work at NIH facilities around the country.\17\ This
funding supports both scientific research and local economies; in 2021,
NIH funding supported more than 552,000 jobs and accounted for $94
billion in economic activity across the U.S.\18\ The basic research
that NIH funds is also critical to the biomedical research pipeline; it
contributed to the discovery of all 210 new drugs that were approved by
the FDA from 2010-2016.\19\
---------------------------------------------------------------------------
\16\ https://www.nih.gov/about-nih/what-we-do/budget.
\17\ https://irp.nih.gov/about-us/research-campus-locations.
\18\ https://www.unitedformedicalresearch.org/wp-content/uploads/
2022/03/UMR_NIHs-Role-in-Sustaining-the-U.S.-Economy-FY21.pdf.
\19\ https://directorsblog.nih.gov/2018/02/27/basic-research-
building-a-firm-foundation-for-biomedicine/.
---------------------------------------------------------------------------
NIH is the indisputable leader of biomedical research in the world,
and its scientists play an indispensable role in responding to both
emerging and ongoing health threats. Together with scientists from the
CDC and other Federal health and science agencies, NIH scientists have
been essential to guiding the Nation through the coronavirus pandemic,
in part by providing timely and candid scientific advice to the
President, Congress, and the American public.
For many years, strong bipartisan support for biomedical research
has led to substantial increases in the NIH budget. Although these
increases have largely restored the purchasing power that NIH had lost
to inflation and inadequate budgets since 2003, meaningful budget
growth is needed to enable NIH to invest not just in important research
priorities across its Institutes and Centers, but also in its most
valuable resource: the research workforce. While NIH should continue to
support meritorious senior scientists, it is essential that it have the
ability to support a sufficient cadre of trainees and early to mid-
career scientists who are able to both address increasingly complex
scientific challenges and eventually lead the research enterprise.
Congress must, therefore, provide NIH with the resources needed for the
training, development, and support of our next generation of
researchers, doctors, professors, and inventors--and give them the
dynamic research environment they need to pursue these careers.
conclusion
AAI greatly appreciates the subcommittee's strong, continuous, and
bipartisan support for NIH and urges an NIH base budget of at least $49
billion for FY 2023 to help the agency invest in vital immunologic
research, support meritorious biomedical scientists at all career
stages, and help researchers and doctors discover new ways to prevent,
treat, and cure disease. In addition, AAI recommends the appropriation
of substantial funding for ARPA-H, which has the potential to greatly
advance human immunology in an era of unprecedented scientific
opportunity.
[This statement was submitted by Peter E. Jensen, M.D., Chair of
the Committee on Public Affairs, American Association of
Immunologists.]
______
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
House Committee on Appropriations, subcommittee on Labor, Health and
Human Services, Education, and Related Agencies. We thank Chairman
Murray, Ranking Member Blunt, 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 in advancing
research and data collection to advance the health of women and
families. Looking ahead, we urge you to make funding of the following
programs and agencies a priority in FY23:
Title V Maternal and Child Health Block Grant at the Health Resources
and Services Administration (HRSA):
The Title V Maternal and Child Health (MCH) Block Grant at HRSA is
the only Federal program that exclusively focuses on improving the
health of mothers and children. The Block Grant is a cost-effective,
accountable, and flexible funding source used to address critical,
pressing, and unique needs of maternal and child health populations in
each State, territory and jurisdiction. Notably, 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 to improve maternal outcomes and
reduce rates of maternal mortality and severe morbidity. For FY23, ACOG
requests $15.3 million for SPRANS to support continued implementation
of AIM.
HRSA has also invested in the Women's Preventive Services
Initiative (WPSI), supporting the WPSI multidisciplinary committee's
development of guidelines for preventive services that are specific to
women and improve women's health across the lifespan. More than 150
million people with private insurance--including 58 million women and
37 million children--currently can receive preventive services without
cost-sharing. Additionally, 20 million Medicaid adult expansion
enrollees and 61 million Medicare beneficiaries receive preventive
services. ACOG recommends an investment of $3,000,000 in FY23 to
support the ongoing and expanding work of WPSI, to include data
collection to gauge performance and progress in implementing preventive
services guidelines and assessing utilization across clinical sites.
Safe Motherhood and Infant Health Program; Maternal Mortality Review
Committees 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, supports maternal mortality
review committees, tracks preterm births, and improves maternal
outcomes through perinatal quality collaboratives. Important strides
have been made as nearly every State either 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 that you fund the
Safe Motherhood Initiative at $164 million to help States expand or
establish maternal mortality review committees and State-based
perinatal quality collaboratives.
Women's Health Research at the National Institutes of Health (NIH):
Women represent half of the US 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 research
mission and portfolio of the Eunice Kennedy Shriver National Institute
of Child Health and Human Development (NICHD), 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 $49 billion for
the NIH in FY23, including $1.816 billion for NICHD.
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 Specific to 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 2018, PRGLAC produced a report to the Secretary
outlining 15 recommendations to facilitate the inclusion of this
population in clinical research, and in 2020 an implementation plan was
published. 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.
Title X Family Planning Program within the Office of Population Affairs
(OPA):
Title X is the only Federal program dedicated to providing family
planning services for people with low incomes. 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. Title
X has been cut or flat-funded every year for the past decade. A
significant investment is needed to support robust restoration of the
program and ensure demand for services is met, particularly as we
prepare for the likely event of the U.S. Supreme Court overturning the
protections afforded by Roe v. Wade. ACOG requests $512 million for
Title X in FY23 to ensure individuals in need have access to evidence-
based care. ACOG urges Congress to show its strong support for
transparent, respectful, evidence-based, and comprehensive reproductive
health care by funding this critical program.
Thank you again for the opportunity to submit our recommendations
to the subcommittee, and for your commitment to improving women's
health.
[This statement was submitted by Rebecca Lauer, Federal Affairs
Manager.]
______
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
House Committee on Appropriations, subcommittee on Labor, Health and
Human Services, Education, and Related Agencies. We thank Chairman
Murray, Ranking Member Blunt, 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 in advancing
research and data collection to advance the health of women and
families. Looking ahead, we urge you to make funding of the following
programs and agencies a priority in FY23:
Title V Maternal and Child Health Block Grant at the Health Resources
and Services Administration (HRSA):
The Title V Maternal and Child Health (MCH) Block Grant at HRSA is
the only Federal program that exclusively focuses on improving the
health of mothers and children. The Block Grant is a cost-effective,
accountable, and flexible funding source used to address critical,
pressing, and unique needs of maternal and child health populations in
each State, territory and jurisdiction. Notably, 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 to improve maternal outcomes and
reduce rates of maternal mortality and severe morbidity. For FY23, ACOG
requests $15.3 million for SPRANS to support continued implementation
of AIM.
HRSA has also invested in the Women's Preventive Services
Initiative (WPSI), supporting the WPSI multidisciplinary committee's
development of guidelines for preventive services that are specific to
women and improve women's health across the lifespan. More than 150
million people with private insurance--including 58 million women and
37 million children--currently can receive preventive services without
cost-sharing. Additionally, 20 million Medicaid adult expansion
enrollees and 61 million Medicare beneficiaries receive preventive
services. ACOG recommends an investment of $3,000,000 in FY23 to
support the ongoing and expanding work of WPSI, to include data
collection to gauge performance and progress in implementing preventive
services guidelines and assessing utilization across clinical sites.
Safe Motherhood and Infant Health Program; Maternal Mortality Review
Committees 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, supports maternal mortality
review committees, tracks preterm births, and improves maternal
outcomes through perinatal quality collaboratives. Important strides
have been made as nearly every State either 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 that you fund the
Safe Motherhood Initiative at $164 million to help States expand or
establish maternal mortality review committees and State-based
perinatal quality collaboratives.
Women's Health Research at the National Institutes of Health (NIH):
Women represent half of the US 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 research
mission and portfolio of the Eunice Kennedy Shriver National Institute
of Child Health and Human Development (NICHD), 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 $49 billion for
the NIH in FY23, including $1.816 billion for NICHD.
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 Specific to 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 2018, PRGLAC produced a report to the Secretary
outlining 15 recommendations to facilitate the inclusion of this
population in clinical research, and in 2020 an implementation plan was
published. 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.
Title X Family Planning Program within the Office of Population Affairs
(OPA):
Title X is the only Federal program dedicated to providing family
planning services for people with low incomes. 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. Title
X has been cut or flat-funded every year for the past decade. A
significant investment is needed to support robust restoration of the
program and ensure demand for services is met, particularly as we
prepare for the likely event of the U.S. Supreme Court overturning the
protections afforded by Roe v. Wade. ACOG requests $512 million for
Title X in FY23 to ensure individuals in need have access to evidence-
based care. ACOG urges Congress to show its strong support for
transparent, respectful, evidence-based, and comprehensive reproductive
health care by funding this critical program.
Thank you again for the opportunity to submit our recommendations
to the subcommittee, and for your commitment to improving women's
health.
[This statement was submitted by Rebecca Lauer, Federal Affairs
Manager.]
______
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 (FY)
2023. ACP is the largest medical specialty organization and the second-
largest physician group in the United States. ACP members include
161,000 internal medicine physicians, 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 FY2023, ACP is urging funding for the following
proven programs to receive appropriations from the subcommittee:
--Health Resources Services Administration (HRSA), $9.8 billion;
Health Workforce, National Health Service Corps (NHSC), $860
million in total program funding; Primary Care Training and
Enhancement (PCTE), $71 million; Maternal and Child Health,
Maternal and Child Health Block Grant, $1 billion; Title X
Family Planning Program, $400 million;
--Agency for Healthcare Research and Quality (AHRQ), $500 million;
--Centers for Medicare and Medicaid Services (CMS), Program
Operations, Private Health Insurance, $145.3 million;
--Centers for Disease Control and Prevention (CDC), $11 billion;
Injury Prevention and Control, Firearm Injury and Mortality
Prevention Research, $35 million; Chronic Disease
Prevention and Health Promotion, Social Determinants of Health,
$153 million;
--National Institutes of Health (NIH), $49 billion; Office of the
Director, Firearms Research, $25 million;
--Public Health and Social Services Emergency Fund (PHSSEF), $3.8
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
17,800 to 48,000 primary care physicians by 2034. Without critical
funding for vital workforce programs, this physician shortage will only
grow worse. Therefore, we urge the subcommittee to provide $9.8 billion
for HRSA programs for FY2023 to improve the care of medically
underserved Americans by strengthening the health workforce. The
College urges at least $860 million in total program funding for the
NHSC in FY2023. The NHSC awards scholarships and loan repayment to
health care professionals to help expand the country's primary care
workforce and meet the health care needs of underserved communities
across the country. In FY 2021, with a field strength of almost 20,000
primary care clinicians, NHSC members are providing culturally
competent care to a target of almost 20 million patients at over 18,000
NHSC-approved health care sites in urban, rural, and frontier areas.
The health professions' education programs, authorized under Title VII
of the Public Health Service Act and administered through HRSA, support
the training and education of health care clinicians to enhance the
supply, diversity, and distribution of the health care workforce.
Within the Title VII program, we urge the subcommittee to fund the
Section 747 PCTE program at $71 million, to expand the pipeline for
individuals training in primary care. 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 grants
for primary care training in rural and underserved areas that have
helped prepare physicians for a career in primary care.
Also, within HRSA, ACP supports $1 billion for the Title V Maternal
and Child Health (MCH) Services Block Grants within FY2023 Maternal and
Child Health funding. ACP believes that policies--such as MCH Block
Grants-must be implemented to address and eliminate disparities in
maternal mortality rates among Black, Indigenous, and other women who
are at greatest risk. MCH Block grants helped give access to health
care and public health services for 60 million people in FY2020. ACP
also supports the administration's request for $400 million for Title X
Family Planning in FY2023. The College has extensive policy supporting
programs that provide access to essential family planning services,
such as Title X. ACP believes that it is essential for women to have
access to affordable, comprehensive, nondiscriminatory public or
private health care coverage that includes evidence-based care over the
course of their lifespans. Accordingly, women should have sufficient
access to evidence-based family planning and sexual health information
and the full range of medically accepted forms of contraception which
can be accessed through Title X Family Planning programs.
AHRQ is the leading public health service agency focused on health
care quality. AHRQ's research provides the evidence-based information
needed by consumers, clinicians, health plans, purchasers, and
policymakers to make informed health care 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 $500 million, to help
restore the agency to its FY2010 enacted level adjusted for inflation.
This amount will allow AHRQ to help clinicians 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, and to make the healthcare more efficient by providing quality
measures to health professionals.
ACP supports at least $145.3 million in discretionary funding
within CMS' Program Operations for private health insurance protections
and programs. This funding would allow CMS to continue overseeing
State-based Marketplaces (SBMs) and operating the Federally-facilitated
Marketplaces (FFMs) 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. Specifically, ACP
supports the administration's request for $11.2 million for market
oversight and $134.1 million to operate and administer Federal
marketplaces. Without these funds it will be much more difficult for
the Federal Government to operate and manage a FFM, raising questions
about where and how their residents would obtain and maintain coverage,
especially with increased need for health coverage due to the COVID-19
pandemic.
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 $11 billion overall for this mission, especially considering
the ongoing COVID-19 public health emergency (PHE). The College also
supports $35 million for the CDC's Injury and Prevention Control to
fund research on firearm Injury and mortality prevention research and
support 10 to 20 multi-year studies to continue to continue to rebuild
lost research capacity in this area. ACP greatly appreciates funding
for this research in FY2020, FY2021, and FY2022 after many years of no
Federal resources for researching the prevention of firearms-related
injuries and deaths. The College also supports the administration's
budget request of $153 million for the Social Determinants of Health
within Chronic Disease Prevention and Health Promotion programs. The
PHE caused by the COVID-19 has highlighted the urgent need to collect
racial, ethnic, and language preference demographic data on testing,
infection, hospitalization, and mortality during a pandemic. These data
should be shared with local, State, territorial, and Tribal
governments.
The College strongly supports $49 billion for the NIH in FY2023 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. ACP also supports the
administration's request for $25 million for research related to the
prevention of firearms injury and mortality within the NIH Office of
the Director.
Lastly, as the Federal Government continues to respond to COVID-19,
ACP supports the administration's request of $3.8 billion for the
PHSSEF in FY2023 to fund programs such as the Strategic National
Stockpile and the Biomedical Advanced Research and Development
Authority. The PHSSEF must be funded adequately enough to maintain a
robust pandemic response, especially when emergency supplemental funds
are no longer available.
The College greatly appreciates the support of the subcommittee on
these issues and looks forward to working with Congress during the
FY2023 appropriations process.
[This statement was submitted by Jared Frost, Senior Associate,
Legislative
Affairs, American College of Physicians.]
______
Prepared Statement of the American College of Surgeons
Chairwoman Murray, Ranking Member Blunt, and Members of the
subcommittee, on behalf of the more than 84,000 members of the American
College of Surgeons (ACS), thank you for the opportunity to submit
written testimony addressing fiscal year (FY) 2023 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. ACS 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 FY 2023:
Fully Fund the Military and Civilian Partnership for the Trauma
Readiness Grant Program (MISSION ZERO)
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 that one
in four military trauma deaths and one in 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 lives both on the battlefield and at home,
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). The MISSION ZERO Act
acts upon the recommendations of the NASEM report to create a grant
program, within the U.S. Department of Health and Human Services (HHS),
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, further advancing
trauma care and providing greater patient access.
ACS thanks Congress for providing $2 million in funding for the
program in FY 22. However, ACS strongly encourages Congress to fully
fund the Military and Civilian Partnership for the Trauma Readiness
Grant Program at the authorized amount of $11.5 million for FY 2023.
Building on previous funding will allow for implementation of military-
civilian trauma partnerships, preserve lessons learned from the
battlefield, translate those lessons to civilian care, and ensure that
service members maintain their readiness to deploy in the future.
Cancer Prevention Research
The ACS Cancer Programs, including the Commission on Cancer (CoC),
is dedicated to improving survival and quality of life for cancer
patients through advocacy on 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 supports the following funding increases for FY 2023.
To ensure a robust, long-term commitment to cancer research and
prevention, Congress should increase the overall budget of the National
Institutes of Health (NIH) to at least $49.048 billion including $7.776
billion for the National Cancer Institute (NCI). The ACS also urges the
inclusion of $462.6 million for cancer programs at the Centers for
Disease Control and Prevention (CDC), including $30 million for the
National Comprehensive Cancer Control Program, and $61.4 million for
the National Program of Cancer Registries (NPCR).
Firearm Morbidity and Mortality Prevention Research
According to the Centers for Disease Control and Prevention (CDC),
there were more than 45,000 firearm-related fatalities in 2020, a
measured increase over previous years. ACS believes that the number of
firearm-related fatalities can be reduced through federally funded
public health research into firearm morbidity and mortality. As with
other injury prevention related efforts, public health research can
play a role in reducing the number of firearm-related injuries and
deaths.
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 that a similar approach can
provide necessary data to inform efforts to reduce firearm-related
injuries and deaths. ACS supports a total of $60 million-35 million for
the U.S. Centers for Disease Control and Prevention (CDC) and $25
million for the National Institutes of Health (NIH) to conduct public
health research into firearm morbidity and mortality prevention.
Removal of Language in Section 510
Serious patient safety concerns arise if a patient's health record
is mismatched or includes inaccurate or incomplete information,
potentially resulting in missed allergies, medication interactions, or
duplicate tests ordered. Unfortunately, there is no accurate or
consistent way for surgeons to link patients to their health
information across the continuum of care, due to long-standing Federal
statutory language. The language, located in Section 510 of the LHHS
Appropriations bill, has prohibited HHS from spending any Federal
dollars to promulgate or adopt a Unique Patient Identifier, thereby
hampering public-private sector collaborative efforts to advance a
nationwide patient identification strategy that is cost-effective,
scalable, secure, and prioritizes patient privacy.
Removing the language in Section 510 will provide HHS with the
ability to evaluate a range of patient identification solutions and
enable the agency to work with the private sector to explore potential
challenges. ACS supports removal of Section 510 from the Labor-HHS
appropriations bill that prohibits HHS from spending any Federal
dollars to promulgate or adopt patient identification strategies.
Thank you for your consideration of our requests. Please contact
Amelia Suermann, ACS Senior Congressional Lobbyist, at
[email protected], if you have any questions or would like additional
information.
Sincerely.
[This statement was submitted by Patricia L. Turner, MD, MBA, FACS,
Executive Director, American College of Surgeons.]
______
Prepared Statement of the American Dental Education Association
The American Dental Education Association (ADEA) represents all 68
U.S. dental schools; more than 800 dental hygiene, dental therapy and
other allied dental programs, as well as advanced dental education
programs; over 50 corporate partners; and more than 18,000 individuals.
ADEA submits this testimony on the Department of Health and Human
Services and the Department of Education budgets for the record and for
your consideration as you begin prioritizing fiscal year 2023 (FY23)
appropriation requests.
ADEA's 68 U.S. member dental institutions' clinics and extramural
dental school facilities provide dental care to more than 2.7 million
patients annually. America's dental schools are one of the nation's
largest dental care safety nets, providing more than $74 million in
uncompensated health care annually to the uninsured and underinsured.
According to the Health Resources and Services Administration
(HRSA), 67 million Americans live in one of the 6,946 dental care
Health Professional Shortage Areas (HPSAs). To close this gap, HRSA
estimates that over 11,567 new practitioners are needed. When you
consider there are slightly more than 201,000 practicing dentists in
the United States and more than 72,500 of them are over age 50, and
that U.S. dental schools graduate about 6,300 students per year, it is
clear that additional work needs to be done to ensure all citizens have
access to culturally competent, comprehensive and quality oral health
care.
For dental students, the patient care experience begins 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 medical centers and are not
required to adhere to the stringent protective guidelines in their
education buildings that are in place at dental school clinics.
Many dental schools are part of the same campuses as the medical
schools, which are often in underserved communities. Dental schools
also exist within minority-serving institutions. Dental schools are
part of their local communities' health care safety net and have been a
previously untapped health care resource, as demonstrated during the
COVID-19 pandemic, and will be again 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 dental school 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 FY23, ADEA respectfully urges your
support for the following funding requests.
$46 million: Oral Health Training Programs
The dental programs in Title VII provide critical education for
predoctoral dental, dental hygiene and dental therapy students and
training for post-doctoral advanced dental education residents in
general, pediatric and public health dentistry. Support for these
programs will help ensure an adequately prepared and culturally
competent dental workforce. 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 200 open, budgeted faculty
positions exist in dental schools. The Primary Care Dental Faculty
Development Program assists schools with recruiting and retaining both
full-time and part-time faculty and community-based faculty to develop/
enhance training focused on improving care for vulnerable and
underserved populations.
Increased support is needed for the Oral Health Training Programs
so the Federal Government can continue to assist in educating and
training oral health professionals in areas where access to quality
care is difficult. The positive impact of these programs is clear. In
academic year 2020-21, 9,562 dental and dental hygiene students were
educated in predoctoral degree programs, 736 dental residents and
fellows in primary care dental residency and fellowship programs
received post-doctoral training in advanced care, and 847 dental
faculty members participated in faculty development activities and
programs. Of the dental residents and fellows, 89 percent received
training on COVID-19 and 79 percent received training on health equity
or the social determinants of health. Awardees were offered experience
and training opportunities at 483 sites. Over 60 percent of these sites
were in medically underserved communities and over 60 percent were in
primary care settings. Almost 40 percent of the sites offered COVID-19-
related services, demonstrating oral health professionals' ability to
provide such care.
In addition to the Oral Health Training Programs, other Title VII
programs play a key role in furthering the ability of the health
professions workforce to respond to the changing makeup of those who
need care. The Diversity and Student Aid programs play a critical role
in ensuring the future health professions workforce reflects the
Nation's changing demographics. These programs must receive 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 career pathway for individuals
from these populations. This unique workforce program encourages young
people from diverse and disadvantaged backgrounds to explore careers in
health care generally, and dentistry specifically. One criticism often
heard is that budget analysts do not know if the program is impactful.
That is simply because the participants are not tracked to see what
their future career path becomes. The success of the following career
pathway program demonstrates that these programs can be effective.
ADEA and the Association of American Medical Colleges, through
funding from the Robert Wood Johnson Foundation, operate a
complimentary program, the Summer Health Professions Education Program
(SHPEP). SHPEP is a six-week academic enrichment program for rising
college sophomores and juniors from historically underrepresented
racial and ethnic (HURE) populations who are interested in the health
professions. A study of participants from 2006 to 2015 found that 65
percent of those who participated in the program's dental portion
applied to dental school and, as of 2015, 589 graduated from dental
school. These pathway programs are effective in attracting HURE
individuals. ADEA requests that funding for HCOP be continued and we
encourage the greatest possible support for the HCOP program.
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.
$540 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 FY22; however, we note that NIDCR continues to have the
smallest budget of all the Institutes, while evidence of the link
between oral health and overall systemic health continues to grow.
The requested increase for FY23 will not bring us to parity, but it
will bring us closer and provide the stable and consistent growth in
research sought by former NIH Director Dr. Francis Collins, and shared
by the NIH Acting Director, Dr. Lawrence Tabak, who is a dentist,
dental educator and researcher, and former NIDCR Director. 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.
$35 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 (gum) disease and caries (tooth decay).
The DRP is a 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
under your purview pertaining to academic dentistry and education of
the dental workforce.
______
Prepared Statement of the American Educational Research Association
Chair Murray, Ranking Member Blunt, and Members of the
subcommittee, thank you for the opportunity to submit written testimony
on behalf of the American Educational Research Association (AERA). AERA
recommends that the Institute of Education Sciences (IES) within the
Department of Education receive at least $815 million for fiscal year
2023, aligned with the request from the Friends of IES coalition, for
which we are a leading member. In addition, AERA recommends $49 billion
in base funding for the National Institutes of Health (NIH) in fiscal
year 2023. Within NIH, we recommend proportional increases for
important research supported by 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.
institute of education sciences
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. Located within the Department of
Education to provide essential education data, statistics, and science
to the Department, the Federal Government, and the Nation, the mission
of IES is analogous to other prominent Federal research agencies such
as the National Science Foundation and the National Institutes of
Health.
Our members, as well as State and Federal policymakers and
practitioners, rely on IES to provide reliable education statistics,
support research to improve academic and non-academic outcomes, and
develop evidence-based practices to inform instruction and support
student learning at all educational levels into the workforce. We
appreciate the increases to IES appropriations over the past few fiscal
years, which has helped support unanticipated costs for the National
Assessment of Educational Progress (NAEP) in the delay in administering
the 4th and 8th grade reading and math assessments due to the COVID-19
pandemic. We are also thankful for the inclusion of a specific line
item within IES for program administration in the fiscal year 2022
omnibus appropriations legislation. This allocation is an important
step in providing additional flexibility and resources for IES to hire
staff. Program officers and statistical staff are critical to carrying
out IES's mission, and particularly for the National Center for
Education Statistics (NCES), which has seen the attrition of 23 staff
positions since fiscal year 2015.
Since IES was created in 2002, it has made scientifically-based
contributions to the progress of education that are used in classrooms
across the country. For example, research findings supported by the
National Center for Special Education Research (NCSER) have informed
supports for implementing positive behavior interventions and supports,
including Team-Initiated Problem Solving, used in over 1,000 schools.
Recent work supported by the National Center for Education Research
(NCER) has led to the development of measurements of reading used in
schools across the Nation, including the Lexia(r) RAPID(tm) Assessment
program, Capti Assess with ETS(r) ReadBasix(tm), and the Phonological
Awareness Literacy Screening in Spanish (PALS espanol). Innovations in
NAEP have led to the examination of process data to better understand
how students arrive at responding to assessment questions, with
implications for future test item development.
Throughout the pandemic, IES has served as an important resource in
providing information about distance learning; pursuing interventions
to address socioemotional needs; and collecting data from schools on
learning modes, school staffing, and COVID-19 mitigation strategies
through the School Pulse Panel. The increased demand for evidence-based
programs since the onset of COVID-19 and the need to address persistent
and exacerbated learning gaps only further speak to the priority
importance of supporting education research and statistics at IES to
inform policy and practice.
We were pleased to see IES enlist the National Academies of
Science, Engineering, and Medicine (NASEM) to conduct three studies to
inform future directions for IES assessment, research, and statistical
activities. The Future of Education Research at IES report included
several recommendations to build on the current strengths of the
research and training programs within NCER and NCSER. These
recommendations called on IES to advance heterogeneity and knowledge
mobilization as project types, fund additional mixed-methods and
qualitative research, support research focusing on teacher- and system-
level outcomes alongside student outcomes, and collect data on and
measure impact of NCER and NCSER training programs.
As one overarching recommendation, the NASEM committee called upon
Congress to reexamine the IES budget in light of comparative funding
for other Federal research agencies with purposes no more salient than
that of IES. We encourage the subcommittee to provide additional
resources in the Research, Development, and Dissemination and Research
in Special Education line items for IES to expand support for these
emerging priorities and foundational research areas.
The Statistics line item supports NCES administrative data
collections and longitudinal surveys, as well as participation by our
Nation's students in important international assessments such as the
Programme for International Student Assessment. Data from NCES,
including from the Integrated Postsecondary Education Data System and
the National Teacher and Principal Survey, are frequently cited and
used to describe the condition of education in the United States. NCES
also has an essential leadership role in implementing the Foundations
of Evidence-based Policymaking Act, which directs Federal agencies to
leverage data and evaluations to inform policy decisions.
Despite NCES' significant roles in producing, disseminating, and
using these important education indicators, funding for NCES
statistical activities remains below fiscal Year2016 levels. In A
Vision and Roadmap for Education Statistics, the NASEM committee that
examined NCES statistical work referenced the limited capacity that
NCES has in both funding and staff. Additional resources are essential
to carry out several of the report's key recommendations, including
developing a strategic plan, broadening outreach to data users to
gather feedback on their needs, and establishing a joint statistical
research program in partnership with IES. We strongly recommend
providing sufficient funding for the Statistics line that would address
the 15 percent loss of purchasing power for this account over the past
decade and increase the capacity of NCES to conduct these activities.
Alongside the important survey work NCES supports, States are
increasingly seeking ways to determine the long-term impact of state
policies, including in education, and they turn to information in their
Statewide Longitudinal Data Systems (SLDS). Initially developed to help
States measure accountability, data has transformed from a hammer to a
flashlight, increasing understanding about student performance and
teacher effectiveness. The most recent SLDS grants are also providing
States the opportunity to partner in the development of meaningful
measures-in this case, to pilot an NCES-developed indicator to measure
poverty using school geocoded addresses as an alternative to using
free-and-reduced lunch eligibility. States participating in this pilot
have provided feedback on this NCES initiative and have also noted
strengthened data capacity and integrity within their data systems as a
result.
To date, NCES has been unable to meet the State demand for SLDS
grants. For the fiscal year 2019 competition, 28 of 44 States that
submitted applications received grants, although the average amount of
grants was reduced by half compared with those awarded in fiscal year
2015. Growing interest in using data from these systems, including an
IES research competition encouraging the research use of these data for
examining longitudinal impacts of State policies, show the importance
of continuing investment in these data systems. Inadequacies in funding
reduce the vitality of this Federal-State partnership to support
evidence-based policy work within and across States.
In A Vision and Roadmap for Education Statistics, the NASEM
committee recommended that NCES strengthen State capacity to link data,
adopt shared data standards, and provide actionable information to
State and local education agencies to help improve student learning
outcomes. Additional funding for SLDS would help enhance NCES technical
assistance and ongoing efforts to promote best practices for State data
governance structures and data interoperability, including through the
voluntary Common Education Data Standards.
In sum, sustained, robust investment in the education research and
statistical infrastructure at IES is necessary to support the success
of our Nation's students, teachers, and education leaders.
national institutes of health
AERA recommends $49 billion for the National Institutes of Health
(NIH) in fiscal year 2023 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 ways to foster health literacy, potential
influencers of family environments on child well-being and cognitive
development, and interventions for students with learning disabilities
who struggle with reading. Providing $1.816 billion for NICHD in fiscal
year 2023 will allow the institute to expand research to increase
understanding of how best to support executive functioning, support
additional research on early language and motor development, 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. OBSSR has long recognized the interdependence of
education and health in terms of prevention, intervention, and the
health-risk consequences of a lack of or limited educational exposure.
We recommend no less than the fiscal year 2022 funding level for OBSSR,
including a proportionate increase in its fiscal Year2023 budget as
provided to the NIH.
Thank you for the opportunity to submit written testimony in
support of at least $815 million for IES and $49 billion in base level
funding for NIH in fiscal year 2023. AERA welcomes working with you and
your subcommittee on strengthening investments in essential research,
data, and statistics related to education and learning.
[This statement was submitted by Felice J. Levine, PhD, Executive
Director, American Educational Research Association.]
______
Prepared Statement of the American Geriatrics Society
The American Geriatrics Society (AGS) greatly appreciates the
opportunity to submit this testimony. The AGS is a 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. The AGS
believes in a just society--one where we all are supported by and able
to contribute to communities and where ageism, ableism, classism,
homophobia, racism, sexism, xenophobia, and other forms of bias and
discrimination no longer impact healthcare access, quality, and
outcomes for older adults and their caregivers. As the subcommittee
works on its fiscal year (FY) 2023 Labor, Health and Human Services,
and Related Agencies Appropriations Bill, we ask that you prioritize
funding for the geriatrics education and training programs under 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
Geriatrics Health Professions Programs at the Health Resources and
Services Agency (HRSA), which includes the Geriatrics Workforce
Enhancement Program (GWEP) and Geriatrics Academic Career Award (GACA)
program. 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 FY 2023:
--At least $82 million to support the GWEP and GACA program (PHS Act
Title VII, Sections 750 and 753(a))
--At least $49 billion, an increase of no less than $4.1 billion over
the enacted FY 2022 level, in the FY 2023 budget for total
spending at NIH for current institutes and operations; a
minimum increase of $60 million for the Brain Research Through
Advancing Innovative Neurotechnologies (BRAIN) Initiative; and
a minimum increase of $226 million for research on Alzheimer's
disease and related dementias over the enacted FY 2022 level in
the FY 2023 budget
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 nearly double from 52.4 million today \1\ to more than 94
million by 2060, while those 85 and older is projected to almost triple
from 6.6 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. 2020 American Community Survey 5-Year
Estimates Subject Tables. Published 2020. Accessed April 25, 2022.
https://data.census.gov/cedsci/table?t=Populations
%20and%20People&tid=ACSST5Y2020.S0101.
\2\ U.S. Census Bureau. An Aging Nation: Projected Number of
Children and Older Adults. Updated October 8, 2019. Accessed April 25,
2022. https://www.census.gov/library/visualizations/2018/comm/historic-
first.html.
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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
Award Program (at least $82 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. 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
FY 2022 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 health care 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 GWEP awardees educate and
engage the broader frontline workforce, including the caregiving
workforce and family caregivers, and focus on opportunities to improve
the quality of care delivered to older adults, particularly in
underserved and rural areas. 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
GWEP was launched in 2015 by HRSA with 44 3-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. Additional
funding would allow 80 GWEPs at $950,000 per program, enabling every
State to have a GWEP and ensure that more rural and underserved areas
of the country can have access to geriatrics training and expertise.
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.
Additional funding would allow 60 GACAs at $100,000 per award, ensuring
we have a larger and more geographically diverse pipeline of geriatrics
research and training expertise with the incentives and resources
needed to grow the field.
GWEPs and GACAs have been successfully leading and preparing the
healthcare workforce, caregivers, and their communities, and most
recently on the frontline throughout the COVID-19 pandemic, including
working with health systems to participate in the outreach to
vulnerable and hard-to-reach populations, preventing widening the
health disparity gap exacerbated by the pandemic. These programs are
critical in providing assistance for proactive public health planning
with their geriatrics expertise and knowledge of long-term care and can
help ensure States and local governments have improved plans for older
adults in disaster preparedness for future pandemics and natural
disasters. Furthermore, as the U.S. population rapidly ages, 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.
To address this issue, we ask the subcommittee to provide a FY 2023
appropriation of at least $82 million for the GWEP and GACA program.
This increase in funding over FY 2022 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. Given
the increasing diversity among older people \4\ and rapid growth of the
older population,\5\ the need for a diverse workforce as well as
training in geriatrics and gerontology will continue to increase. The
infrastructure of care in the U.S. needs substantial investments so
that access to long-term services and supports is expanded while the
healthcare workforce is adequately supported and prepared to care for
us all as we age.
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\4\ Matthews KA, Xu W, Gaglioti AH, et al. Racial and Ethnic
Estimates of Alzheimer's Disease and Related Dementias in the United
States (2015-2060) in Adults Aged >=65 Years. Alzheimers Dement.
2019;15(1):17-24. doi:10.1016/j.jalz.2018.06.3063.
\5\ U.S. Census Bureau. An Aging Nation: Projected Number of
Children and Older Adults. Updated October 8, 2019. Accessed April 25,
2022. https://www.census.gov/library/visualizations/2018/comm/historic-
first.html.
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research funding initiatives
National Institutes of Health/National Institute on Aging (additional
$60 million for the Brain Research Through Advancing Innovative
Neurotechnologies Initiative and a minimum increase of $226
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 $60 million in the FY 2023 budget for the BRAIN
Initiative and a minimum increase of $226 million for research on
Alzheimer's disease and related dementias over the enacted FY 2022
level.
The Federal Government spends a significant and increasing amount
of funds on healthcare costs associated with age-related diseases. By
2050, for example, the number of people age 65 and older affected by
dementia is estimated to reach 12.7 million cases--nearly double the
number in 2021--and is projected to cost $355 billion which does not
include the $256.7 billion in unpaid caregiving by family and
friends.\6\ Further, chronic diseases related to aging, such as
diabetes, heart disease, and cancer continue to afflict 80 percent of
people age 65 and older.\7\ Forty percent of Medicare beneficiaries
have four or more chronic conditions and account for 78 percent of
Medicare expenditures.\8\ 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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\6\ Alzheimer's Association. 2021 Alzheimer's Disease Facts and
Figures. Alzheimers Dement. 2021;17(3):327-406. doi:10.1002/alz.12328.
\7\ National Prevention Council. Healthy Aging in Action: Advancing
the National Prevention Strategy. Published November 2016. Accessed
April 25, 2022. https://www.cdc.gov/aging/pdf/healthy-aging-in-
action508.pdf.
\8\ Centers for Medicare and Medicaid Services. Chronic Conditions
Charts: 2018. Published 2018. Accessed April 26, 2022. https://
www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-
Reports/Chronic-Conditions/Chartbook_Charts.
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Additionally, the AGS supports at least $49 billion, no less than a
$4.1 billion increase over the enacted FY 2022 level, in the FY 2023
budget for total spending at NIH for current institutes and operations.
We also urge you to ensure that any funding for the Advanced Research
Projects Agency for Health (ARPA-H) supplement, not supplant, the total
$49 billion base budget recommendation. We believe that a meaningful
increase in NIH-wide funding, in combination with aging and increase in
prevalence of diseases, 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
Chair Murray, Ranking Member Blunt, and Members of the
subcommittee, as President of the American Heart Association, I would
like to submit my written testimony on behalf of our 40 million
volunteers and supporters. My name is Dr. Donald Lloyd-Jones, and as
the President of the American Heart Association, I serve as the chief
volunteer scientific and medical officer, responsible for the oversight
of all medical, scientific, and public health matters, and those
related to public policy. I am also the Chair of the Department of
Preventive Medicine, the Eileen M. Foell Professor of Heart Research,
and Professor of Preventive Medicine, Medicine, and Pediatrics at
Northwestern University's Feinberg School of Medicine in Chicago.
As an epidemiologist and board-certified practicing cardiologist
for more than 23 years, I understand firsthand the burden of
cardiovascular disease. I have a broad and deep understanding of what
individuals and families need to promote health, prevent disease, cure
illness, and manage chronic health conditions. As a volunteer with the
American Heart Association for more than 24 years, I have been proud to
advance the organization's mission to be a relentless force for a world
of longer, healthier lives for all. I am also proud to represent the
American Heart Association as a major advocate for population health at
the Federal, State, and local levels, as a supporter of healthy
communities, and as a champion for health equity.
The American Heart Association is the largest nonprofit funding
source for cardiovascular and cerebrovascular disease research, next to
the Federal Government. We have funded 14 Nobel Prize winners and
several important medical breakthroughs, including techniques and
standards for cardiopulmonary resuscitation (CPR), the first artificial
heart valve, implantable pacemakers, cholesterol inhibitors,
microsurgery, and drug-coated stents. Of note, the American Heart
Association is also the largest and most experienced provider of CPR
training-training millions of individuals, first-responders, and health
care workers worldwide each year through a vast network of more than
3,500 Authorized Training Centers and more than 400,000 instructors.
As Congress works to draft the Labor, Health and Human Services,
Education and Related Agencies (Labor-HHS-ED) appropriations
legislation for fiscal year (FY) 2023, the American Heart Association
respectfully requests that the subcommittee provide $25 million over no
more than the next five fiscal years to the Centers for Disease Control
and Prevention (CDC) Division for Heart Disease and Stroke Prevention
to expand an existing, national sudden cardiac registry to capture data
from all States, nationwide. Annually, more than 350,000 people fall
victim to sudden cardiac arrest outside of a hospital environment. It
is the single leading mechanism of death in the US, and yet it is not
well recognized as a major public health challenge. When a person
experiences a sudden cardiac arrest, seconds count in the response of
bystanders and the emergency system to restore a normal heart rhythm
and blood pressure. Indeed, these seconds determine the difference
between life and death, and the chance for a meaningful neurological
recovery. Unfortunately, only about 1 in 10 victims survive a sudden
cardiac arrest, and many survivors are left with permanent heart and
brain damage.
During an emergency response to an out-of-hospital cardiac arrest,
the victim's chances depend entirely on a team of volunteers and
professionals that span laypersons, emergency dispatch, law
enforcement, medical first responders, EMS providers, and later
hospital-based nurses and physicians. The team must work together to
resuscitate the cardiac arrest patient by quickly recognizing the
cardiac arrest event, providing early CPR and early defibrillation,
delivering expert advanced care, and downstream post-resuscitation
critical care and rehabilitation.
Traditionally, these efforts have been well-intentioned but have
not leveraged quality improvement strategies that measure care and
outcome. Consequently, there is marked disparity across emergency
systems with survival varying as much as 10-fold across different
communities.\1\ The disparity is unacceptable and can be addressed with
key programmatic implementation designed to impact local performance.
The effective strategy for improvement was detailed in the National
Academies of Science publication: Cardiac Arrest Resuscitation: A Time
to Act.\2\ Since its publication, there has been substantial effort to
provide high-traction, accessible resources that can impact
resuscitation quality improvement, and in turn, advance public health.
---------------------------------------------------------------------------
\1\ Cardiac Arrest Registry to Enhance Survival (CARES), 2020
Annual Report, Page 38, https://mycares.net/sitepages/uploads/2021/
2020_flipbook/index.html?page=1.
\2\ Institute of Medicine. 2015. Strategies to Improve Cardiac
Arrest Survival: A Time to Act. Washington, DC: The National Academies
Press. https://doi.org/10.17226/21723.
---------------------------------------------------------------------------
The cornerstone of quality improvement--as highlighted in the
National Academies document--is the need for consistent, broadly-
accessible, scientifically-informed registry data to measure the care
and outcome of cardiac arrest and identify opportunities for
programmatic improvement. The Cardiac Arrest Registry to Enhance
Survival (CARES) was first established by the CDC in 2004 in
collaboration with the Department of Emergency Medicine at the Emory
University School of Medicine to meet this need and provide
informative, high-fidelity surveillance that can direct quality
improvement. CARES is the only national out-of-hospital cardiac arrest
(OHCA) registry in the United States and currently includes 31 State-
based registries covering 51 percent of the U.S. population and
representing more than 2,500 EMS agencies and 2,000 hospitals. To date,
CARES has published more than 100 articles in peer-reviewed journals
and has supported countless quality improvement efforts in
participating communities, resulting in an increase in cardiac arrest
survival and a more thorough understanding of OHCA treatment and
survival in the field of emergency medicine. CDC's funding for the
CARES registry was eliminated in 2012 because of sequestration and
other budget cuts. The CARES registry operations have continued in the
absence of Federal funding for 10 years through an infusion of private
funding each year. This is an unsustainable model for this critically
important work. In addition, expansion of the registry to all remaining
States and to cover the remaining half of the US population will
require Federal support.
The CARES registry allows communities and public health
organizations to monitor their quality of care, compare patient
populations, measure interventions and outcomes, and ascertain whether
resuscitation is provided according to evidence-based guidelines.
Without uniform and reliable data collection in every State,
communities cannot ascertain the effectiveness of their sudden cardiac
arrest response systems, nor can they assess the impact of
interventions designed to improve survival rates. In other words, one
cannot improve what one does not measure, and every State across the
Nation should be collecting these data in a unified, harmonized, and
standardized central registry to best serve their communities.
Multiple systems--large and small--now use CARES as they move
forward with program improvements. The emergence of CARES corresponds
to dynamic programmatic opportunities to improve care for
resuscitation. Implementation of these innovative programs to improve
early CPR, defibrillation, and advanced treatment can accelerate with
the use of CARES to evaluate how local implementation impacts
prognosis. Early evaluation of this ``measure and improve'' quality
approach has highlighted some remarkable success, ranging from outcome
improvement in rural communities in North Carolina and Washington State
to lives saved in urban centers such as Chicago and Detroit.
Now is the time to scale the registry to be an inclusive and truly
national initiative that will leverage CARES measurement to achieve
wide-ranging ``best-practices'' implementation that can improve care
across emergency systems and in turn benefit community health and save
many more lives from sudden cardiac arrest. We thank you for the
consideration of our request to include $25 million for the CDC
Division for Heart Disease and Stroke Prevention to enable national
access to CARES and its consequent strategy to measure and improve
resuscitation, address substantial system disparities, and in turn
improve the Nation's health.
[This statement was submitted by Donald M. Lloyd-Jones, MD, ScM,
FACC, FAHA, President, American Heart Association.]
______
Prepared Statement of the American Indian Higher Education Consortium
On behalf of the Nation's 35 accredited 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 Year2023 funding requests. The following is a list of
recommendations including Department, program, and funding requests.
Department of Education--Office of Postsecondary Education
--Strengthening Tribal Colleges and Universities (HEA Title III-Part
A (Sec. 316): $70,000,000 (discretionary)
--Perkins Career and Technical Education Programs (Sec. 117):
$16,000,000
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: $10,000,000
Tribal Colleges and Universities: Serving Students Across Indian
Country and Rural America
Currently, 35 accredited TCUs operate more than 75 campuses and
sites in 15 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 nearly
half are first generation students. In total, TCUs serve over 160,000
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 Year2023 funding requests.
u.s. department of education
Strengthening Tribal Colleges (HEA Title III--Part A--Section 316):
TCUs urge the subcommittee to provide $70,000,0000 for the
Strengthening Tribal Colleges and Universities 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 accredited TCUs through two funding sources Part A
discretionary funding: FY 23 request $70 million (FY 2022, $43.895
million) and Part F mandatory funding (FY 2022, $28.29 million).
In 2019, TCUs feared losing nearly half of Title III funding when
Part F funding temporarily expired. Fortunately, the ``Fostering
Undergraduate Talent by Unlocking Resources to Education Act (Public
Law 116-91) was signed into law on December 20, 2019, permanently
authorizing Part F mandatory funding at $30 million for TCUs. With
increased Part A funding, TCUs will be able to expand critical student
support programs, meet accreditation requirements, and address ongoing
infrastructure needs, which are all essential in supporting
institutional development.
Carl D. Perkins Career and Technical Education Programs
Tribally Controlled Postsecondary Career and Technical
Institutions: AIHEC requests $16,000,000 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 Year2020, the Special Programs for
Indian Children account received $67,993,000, of which $13,668,000 was
allocated for 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 2023.
u.s. department of health and human services
Administration for Children and Families--Office of Head Start:
Tribal Colleges and Universities Head Start Partnership Program: AIHEC
requests $10,000,000 for the TCU-Head Start Partnership program. The
TCU-Head Start Partnership program was re-established in fiscal
Year2020 with $4,000,000, continued in fiscal Year2021 with $4,000,000,
and increased in fiscal year 2022 with $6,000,000. TCUs have had
demonstrated success in training early childhood educators and Head
Start teachers who are urgently needed across Indian Country. In 2021,
71.7 percent of Head Start teachers nationwide held a bachelor's degree
or higher as required by Federal law; but only 42 percent of Head Start
teachers met the requirement in Indian Country (Head Start Region 11);
only 39 percent of assistant teachers in Region 11 met the associate-
level requirements, compared to 76 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 Partnership Program (42 U.S.C. 9843g), which
helped TCUs build capacity in Early Childhood Education (ECE) by
providing scholarships and stipends for Head Start teachers and
assistant teachers to enroll in TCU ECE 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 teachers and assistant
teachers. However, recent reports revealed high turnover rates for Head
Start workers. Many ECE teachers cited leaving their Head Start
positions for higher paying jobs or retirement, due to pandemic-related
stress, and other reasons.
In the 18 months since the program was re-established, six TCUs
have accomplished incredible success in supporting the early childhood
teacher pipeline. Recently, Stone Child College (Box Elder, MT)
expanded its Early Childhood Education program to offer a bachelor's
degree, in addition to an associate degree, in response to student
requests for in-person classes. Cankdeska Cikana Community College
(Fort Totten, ND) offers an ECE associate degree and has an
articulation agreement allowing students to transfer into the ECE
bachelor's degree program at Mayville State University (Mayville, ND).
Many of the current ECE students are full-time Head Start teachers
while balancing part-time course work in addition to meeting family
responsibilities. Through this program, TCUs are able to provide
students with mental and emotional health resources to support and
retain these resilient ECE students. Likewise, Navajo Technical
University (Crownpoint, NM), Salish Kootenai College (Pablo, MT), Fond
Du Lac Tribal and Community College (Cloquet, MN), and White Earth
Tribal and Community College (Mahnomen, MN) have developed ECE student
support programs to meet similar student needs. However, due to limited
funding, only six of the 25 TCUs with ECE programs are funded to
provide these transformative opportunities to advance early childhood
education careers. With increased funding, TCUs can leverage resources
to aid in building an early childhood education workforce to better
serve the education needs of AI/AN children.
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 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 FY 2023 appropriations requests. Thank you.
______
Prepared Statement of the American Library Association
The American Library Association (ALA) urges the subcommittee to
include in its Fiscal Year (FY) 2023 appropriations bill at least $50
million for Innovative Approaches to Literacy (IAL) under the
Department of Education (DOE).
As the Nation struggles with the lingering effects of COVID-19, we
are beginning to see the troubling consequences on early literacy
development. Librarians work heroically to continue needed services for
all students and assist classroom teachers and administrators in new
and innovative ways. During the pandemic, school librarians continued
to support access to education and tutoring sites for homework help.
School libraries lent books, eReaders, computers and hotspots to
students, many of whom did not have access to these basic services at
home. Some libraries are even streaming story times and author visits
to encourage young children and their families to keep up reading in
their homes.
School library services are in great demand yet face tightening
budgets and reduced staff at many schools, which limits their ability
to provide literacy training and support.
Innovative Approaches to Literacy is the only Federal program
providing dedicated support to school libraries. Authorized in the
Every Students Succeeds Act (ESSA), IAL provides competitive awards to
school libraries as well as national not-for-profit organizations,
including partnerships that reach families outside of local educational
agencies (LEAs), to support children and families in high-need,
underserved communities. By providing age-appropriate books, supporting
parental engagement programs, and reinforcing professional development,
the IAL program helps to support literacy skills to ensure that
children enter school ready to learn and best positioned for success.
Since its inception in FY 2012, more than 200 IAL grants have been
awarded to national non-profit organizations and school districts
across every region of the U.S., delivering critical literacy resources
in these communities. In light of interrupted learning this past year
due to the pandemic, it is even more urgent to support children's
literacy at home and in school. This is particularly acute for minority
and low-income students. The IAL program is designed to provide the
kind of support children and families need. Some examples of IAL grant
activities include:
--In 2021, an IAL grant was awarded to Tuscaloosa (AL) City Schools,
a midsize urban city school district serving 10,500 K-12
students in 20 locations. This collaborative grant with school
libraries will provide a learning environment that is racially,
ethnically, culturally, disability status and linguistically
responsive. The grant will allow the district to implement the
Alabama Literacy Act to improve reading proficiency of public-
school kindergarten through grade 3 students. The district will
be able to provide early literacy services and distribute high-
quality books on a regular basis to children from low-income
communities. Tuscaloosa schools have set goals that include a
minimum of 85 percent of librarians will receive literacy
training; 100 percent of participating schools will develop,
improve, or expand their K-12 literacy plan; a 4 percent
increase over baseline; and 100 percent of students will
receive personal books and/or access to online books.
--The Yakama Nation Tribal School in Washington state joined
community partners to receive an IAL grant in 2021. Their
Reading Through Mirrors & Windows IAL grant targets 14 schools
with a large percentage of Native American and Hispanic
students and will support literacy programs for educators,
students, and parents designed to improve literacy skills. The
grant will promote book distribution, mobile libraries, out-of-
school time literacy activities, reader/writer theaters, and
read-a-loud events. The 3-year grant has established laudable
goals for the schools to achieve each year.
A strong learning environment begins with literacy skills in early
childhood. However, only 35 percent of fourth grade students, 34
percent of eighth grade students, and 37 percent of twelfth grade
students performed at or above the proficient level on the 2019 NAEP
reading assessment (National Center for Education Statistics, 2019).
This was exacerbated during the pandemic by school building closings
and remote learning, which challenged students and educators alike. A
study by McKinsey & Company found that students taking formative
assessments in spring 2021 lost the equivalent of 4 months of learning
in reading on average, but the unfinished learning was especially for
students of color and those from low-income households. Without
immediate and sustained interventions, researchers estimate that
pandemic-related unfinished learning could reduce lifetime earnings for
K-12 students by an average of $49,000 to $61,000.
The American Academy of Pediatrics reports that children introduced
to early reading and literacy support tend to read earlier and excel in
school compared to children who lack the same access to books and
literacy activities. Early literacy mastery is a strong indicator of
future success in school and in life. Unfortunately, more than one in
three American children start kindergarten without foundational skills
to learn to read.
Recent studies and articles demonstrate the challenges facing out
youngest students. One article notes that early reading skills in
Virginia are at a 20-year low while 60 percent of high-poverty students
in Boston are high-risk for reading problems. Goldstein, Dana (2022,
March 8) New York Times. Another article reports that more than one in
three children who started school during the pandemic need
``intensive'' reading help. Sparks, Sarah (2022, February 16) Education
Week.
Providing books and childhood literacy for such children is crucial
to their learning to read, which is crucial to their--and our
Nation's--economic futures. IAL is an important literacy support
program that is urgently needed to address reading decline. IAL grants
have been awarded during the life of the program to almost every State
in the Nation. Schools across the country have received grants,
including Dillingham (AK) City School District; Savannah (GA) Chatham
City Public School System, Ypsilanti (MI) Community Schools, Cottonwood
(OK) School, 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 $50 million in IAL.
ALA asks for a modest, but critical, Federal investment of $50
million in the FY 2022 Innovative Approaches to Literacy (IAL) program,
authorized under the Every Student Succeeds Act. IAL provides
competitive awards to high-need 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.
ALA understands the tight fiscal constraints on the subcommittee,
and we appreciate its continued dedicated support of IAL. Thank you for
your commitment to sustaining and strengthening our communities and our
Nation by supporting America's school libraries.
______
Prepared Statement of the American Liver Foundation
summary of fiscal year 2023 appropriations recommendations
_______________________________________________________________________
--Provide the National Institutes of Health (NIH) with at least $49.
billion and provide individual NIH Institutes and Centers, such
as NIDDK, NIMHD, and NCI with proportional discretionary
increases.
--Please provide additional, distinct funding for the emerging
Advanced Research Projects Agency for Health (ARPA-H) at
NIH, which would facilitate implementation of this
important program without supplanting ongoing NIH research
activities.
--Provide the Centers for Disease Control and Prevention (CDC) with
at least $11 billion to facilitate timely public health efforts
along with proportional increases for CDC Centers and
Divisions, such as NCCDPHP and NCHHSTP.
--Please provide $54.5 million for the Division of Viral Hepatitis
at CDC.
--Please provide $150 million for the Opioid and Infectious
Diseases Program at CDC.
--Please provide $6 million for the Chronic Disease Education and
Awareness Program at CDC.
--Provide the Health Resources and Services Administration (HRSA)
with a funding level of at least $9.8 billion and ensure that
the agency has sufficient resources to enhance organ donation
through awareness activities and partnerships.
--Please support the communities Think Liver, Think Life awareness
campaign and include timely committee recommendations
prioritizing liver health efforts.
_______________________________________________________________________
Thank you for the opportunity to submit testimony on behalf of the
American Liver Foundation (ALF) and the liver disease community.
Chairwoman Murray, Ranking Member Blunt, and distinguished members of
the subcommittee, we extend our thanks for the significant investments
in HHS, particularly CDC and the emerging Chronic Disease Education and
Awareness program, provided over recent years. Please maintain this
commitment and further enhance support for public health programs as
you work with your colleagues on appropriations for FY 2023. Thank you
again.
about the foundation
The American Liver Foundation is the Nation's largest non-profit
organization focused solely on promoting liver health and disease
prevention. The American Liver Foundation achieves its mission in the
fight against liver disease by funding scientific research, education
for medical professionals, advocacy, information and support programs
for patients and their families as well as public awareness campaigns
about liver wellness and disease prevention. The mission of the
American Liver Foundation is to promote education, advocacy, support
services and research for the prevention, treatment and cure of liver
disease. Additional information and support can be found at
www.liverfoundation.org or by calling 1 800 GO LIVER (800-465-4837)
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. Nearly 100 million people in the U.S. are
affected by liver disease. 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.
cdc chronic disease education & awareness program
Thank you for establishing the CDC Chronic Disease Education &
Awareness Program in FY 2021 and providing $1.5 million in initial
support and then doubling that support for $3 million for FY 2022.The
first round of funding is now supporting four cooperative agreements in
key areas, but many patient organizations seek valuable collaborations
with CDC that can directly impact patients and improve public health. A
few contemporary examples include raising awareness of NASH/NAFLD, and
sharing public health information that can slow or stop the progression
of various liver conditions into liver cancer. This new program
provides a competitive mechanism that allows CDC to award meritorious
cooperative agreements on an annual basis and it is only growing more
popular. Since there is tremendous demand in this area, and no shortage
of quality opportunities for CDC, we ask that funding be systematically
increased again with $6 million provided for FY 2023.
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''. This epidemic has
been further fueled by the well-documents rise in opioid abuse during
the COVID-19 pandemic. Due to the ongoing increase in rates of
injection drug use, CDC recently identified a 400 percent increase in
rates of hepatitis C among 20--29 year olds an 300 percent increase
among 30--39 year olds. The elimination initiative has been well-
supported since its establishment, but much more can be done. We ask
that this allocation be systematically increased along with the annual
funding for the Division of Viral Hepatitis (which saw is first modest
funding increase in many years for FY 2022) to ensure CDC has adequate
resources to make progress.
covid-19 and liver diseases
There is a growing body of work focused on COVID-19's impact on the
liver and persistent impacts for COVID ``long haulers''. We appreciate
that a well-resourced NIH and public health response can continue to
advance research in this critical area. Moreover, in regards to
vaccination, please note that the American Association for the Study of
Liver Diseases (AASLD) recommends that providers advocate for
prioritizing patients with compensated or decompensated cirrhosis or
liver cancer, patients receiving immunosuppression such as SOT
recipients, and living liver donors for COVID-19 vaccination based upon
local health policies, protocols, and vaccine availability.
nash bill of rights
Nonalcoholic steatohepatitis or NASH is liver inflammation and
damage caused by a buildup of fat in the liver. The prevalence of NASH
has been rising and innovative treatment options have been coming to
market along with improved healthcare. To better serve patients, ALF
crafted a NASH Patient Bill of Rights that provides critical
information on non-invasive testing options and coordinating
multidisciplinary healthcare. The Foundation looks forward to working
with the U.S. Public Health Services to disseminate critical
information about NASH to patients and providers.
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 10 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 Lorraine Stiehl, Chief Executive
Officer,
American Liver Foundation.]
______
Prepared Statement of the American Lung Association
summary of fiscal year 2023 appropriations recommendations
_______________________________________________________________________
$11 billion for the Centers for Disease Control and Prevention (CDC)
--National Center for Chronic Disease Prevention & Health Promotion
(NCCDPHP)
Provide $3.75 billion for NCCDPHP
-- Provide $310 million for CDC's Office of Smoking and Health
(OSH)
-- Provide $6 million for CDC's Chronic Disease Education and
Awareness Program
--National Immunization Program at CDC's National Center for
Immunization and Respiratory Diseases (NCIRD)
Provide $1.13 billion for NCIRD
--National Center for Environmental Health (NCEH)
Provide $322 million for NCEH
--Provide $110 million for CDC's Climate and Health Program
--Provide $40 million for CDC's National Asthma Control Program
(NACP)
$49 billion for the National Institutes of Health (NIH)
--Provide $4.015 billion for the National Heart, Lung, and Blood
Institute (NHLBI)
--Provide $932 million for the National Institute of Environmental
Health Sciences (NIEHS)
_______________________________________________________________________
The American Lung Association is the leading public health
organization working to save lives by improving lung health and
preventing lung disease through education, advocacy and research.
Chairwoman Murray, Ranking Member Blunt, and distinguished members of
the subcommittee, we extend our thanks for the significant investments
in the Department of Health and Human Service (HHS), including the
robust response to the COVID-19 pandemic. Please maintain this
commitment and further enhance support for public health programs as
you work on appropriations for FY 2023. The American Lung Association
also asks for your leadership in opposing all policy riders that would
weaken key lung health protections.
The ongoing COVID-19 pandemic continues to underscore the need for
significant and sustained investments in our Nation's public health
infrastructure, especially at CDC. For years, the Lung Association has
requested for robust CDC funding. Unfortunately, the consequences of
the failure to adequately invest in both cross-cutting and individual
programs at CDC has become evident. The pandemic has taken the lives of
more than one million people in the U.S. and lung disease deaths this
past year have increased 80 percent due to COVID-19. We ask that CDC
funding be increased to at least $11 billion for FY 2023. This funding
must be in addition to, not in lieu of, emergency funds to respond to
the current pandemic.
The COVID-19 pandemic has also highlighted the importance of
preventing and managing chronic lung conditions. Individuals living
with certain lung diseases and people who smoke are among the most at
risk for severe illness from COVID-19. Research also suggests possible
links between long-term exposure to air pollution and worse COVID-19
outcomes. The Lung Association recognizes the tremendous challenges
Congress has faced in responding to the pandemic and appreciates all
that it has done thus far. Continued investment in CDC programs that
help smokers quit; promote asthma control; support prevention and
treatment of lung and other chronic diseases, including chronic
obstructive pulmonary disorder (COPD) and lung cancer; and prepare for
the health impacts created by a warming climate is vital.
The American Lung Association strongly supports substantial Federal
investments in key public health and biomedical research activities,
especially at CDC and NIH, respectively. For FY23, the Lung Association
encourages Congress to take a balanced approach in its increases for
these vital agencies and urges Congress to make significant investments
in public health and biomedical research.
Provide $11 billion for the Centers for Disease Control and
Prevention (CDC): CDC is faced with unprecedented challenges and
responsibilities, especially in the respiratory space. Consequently,
the American Lung Association strongly supports the CDC Coalition's
request of $11 billion for CDC for FY23 and sustained, robust and
predictable funding moving forward annually for both cross-cutting
initiatives such as workforce and data modernization, as well as
individual lines as outlined below.
Provide $3.75 billion for National Center for Chronic Disease
Prevention and Health Promotion (NCCDPHP): Chronic diseases can be
prevented and/or managed through supportive public health interventions
including tobacco prevention and cessation; however, they continue to
be a major problem in the United States. Over 90 percent of the
Nation's $3.8 trillion in annual health care costs result from chronic
diseases. The American Lung Association strongly supports tripling the
NCCDPHP budget over 3 years (FY23-FY25) to $3.75 billion. Such funding
will allow NCCDPHP to fulfill its mission by expanding the current
patchwork of existing programs to all jurisdictions nationwide and by
implementing new efforts to address health challenges currently without
programs, including the chronic disease cohort of those experiencing
the long-term effects of COVID-19, or ``long COVID.'' It will also
enable a significant investment in CDC's Social Determinants of Health
(SDOH) program, which seeks to work with communities to identify and
remedy SDOH.
Provide $310 million for CDC's Office of Smoking and Health (OSH):
One in four high school students continues to use at least one tobacco
product. OSH is the lead Federal agency for tobacco prevention and
control. The American Lung Association is appreciative of the $4
million increase in funding for OSH in FY22 and asks for an additional
$68.5 million for FY23. OSH works with State and local governments to
prevent youth tobacco use and to promote evidence-based methods to help
smokers quit; for example, OSH's ``Tips from Former Smokers'' campaign
has successfully prompted one million Americans to quit smoking. The
additional funding will be used to continue to address the e-cigarette
pandemic, to enhance the ``Tips from Former Smokers'' campaign so that
it can be run year-round, to invest in youth prevention efforts and to
work to eliminate health inequities among racial, ethnic, sexual, rural
and socio-economic groups.
Provide $6 million for CDC's Chronic Disease Education and
Awareness Program: Far too many individuals in the United States have
or are at risk of potentially devastating chronic diseases without
knowing. COPD is one of the leading causes of death and disability in
the United States. Approximately 16 million people in the United States
have COPD, and millions more remain undiagnosed and unaware of the
warning signs that would prompt earlier treatment. Given this
significant gap in knowledge, the Lung Association greatly appreciates
the creation and funding of the Chronic Disease Education and Awareness
competitive grant program at CDC in fiscal year 2021 and the increase
in FY22. In FY23, the Lung Association asks for this program to be
increased to $6 million to continue the momentum and allow CDC to
expand its work with stakeholders to respond to chronic diseases, such
as COPD, that do not have stand-alone programs.
Provide $110 million for CDC's Climate and Health Program: 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 (which include worsening air pollution;
diseases that emerge in new areas; stronger and longer heat waves; and
more frequent and severe droughts and wildfires) and providing guidance
to States in adaptation. The Climate and Health Program includes the
Climate Ready States and Cities Initiative (CRSCI) that utilizes a
five-step Building Resilience Against Climate Effects (BRACE) program
to protect communities. The CRSCI program is a valuable tool for
States, localities, Tribes and territories, but it has received
insufficient funding. Just recently, funding for a number of States was
actually cut. The President's budget requests $110 million, which would
allow CDC to implement a climate and health program across all States
and territories.
Provide $40 million for CDC's National Asthma Control Program
(NACP): It is estimated that 24.8 million Americans currently have
asthma, of whom 5.5 million are children. The NACP tracks asthma
prevalence, promotes asthma control and prevention and builds capacity
in States. This program has been highly effective: asthma mortality
rates have decreased despite the rate of asthma increasing. We thank
Congress for the increase in funding of $500,000 in FY22. Additional
funding would allow increased surveillance in States, including where
pediatric asthma surveillance is not available. At present, 24 States,
Puerto Rico, and Houston, TX, receive funding, and additional entities
are funded to collect detailed surveillance data so that public health
interventions are more focused and effective. Additional funding of $40
million in FY23 would also allow for the NACP to continue its efforts
to develop public health interventions aimed at protecting people with
asthma from wildfire smoke.
Provide $1.13 billion for the National Immunization Program at
CDC's National Center for Immunization and Respiratory Diseases
(NCIRD): The success of the Nation's vaccination programs has enabled
many individuals to forget about the impact of many vaccine-preventable
diseases, such as polio, that once wreaked havoc. The COVID-19
pandemic, however, has provided a stark reminder of the need and
significance of vaccines and a robust national vaccination program. As
the Nation waits to know if COVID-19 vaccines will be made available
for children under 5, and if research shows that booster shots for non-
immunocompromised adults are a viable way to reduce the effects of
COVID-19, it is crucial that national vaccine programs remain prepared
and well-funded as we enter the third year of the COVID-19 pandemic.
The National Immunization Program must receive strong and sustained
funding. The Lung Association asks for $1.13 billion for NCIRD to
enhance COVID-19 vaccinations, bolster the Nation's immunization
infrastructure and address any gaps in routine immunizations that may
have emerged as a result of the pandemic.
Provide $49 billion for the National Institutes of Health (NIH):
The Lung Association supports increased funding for NIH research on the
prevention, diagnosis, treatment and cures for tobacco use and all lung
diseases including lung cancer, asthma, COPD, pulmonary fibrosis,
influenza and tuberculosis. The Lung Association also 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. Lastly, the Lung Association urges increased
funding for lung cancer research in addition to the Cancer Moonshot and
the All of Us Program. Although lung cancer remains the leading cause
of cancer deaths in the United States, the lung cancer survival rate
has increased 33 percent in the past 10 years due to improvements in
treatment. It is important that funding for lung cancer research
increase concurrently in order to continue to make life-saving
advancements in research.
Provide $4.015 billion for the National Heart, Lung, and Blood
Institute (NHLBI): The Lung Association supports increased funding for
the National Heart, Lung, and Blood Institute in FY23. NHLBI is a
global leader in lung, heart and blood disease research, and invests in
prevention programs and new treatments for chronic lung conditions.
NHLBI currently conducts research on improving early identification and
treatment of COPD, and on new asthma treatments for the half of all
severe asthma patients who do not respond to conventional medication.
As the COVID-19 pandemic continues, NHLBI research also addresses the
uncertainty regarding the long-term impacts of COVID-19 on patients on
the heart, lungs and blood. Additional funding of $4 billion would
allow NHLBI to bolster these crucial projects.
Provide $932 million for the National Institute of Environmental
Health Sciences (NIEHS): The Lung Association requests funding of $932
million for NIEHS. Research at NIEHS studies and identifies links
between chronic diseases and patients' environmental surroundings,
which is fundamental to treating lung diseases such as asthma and COPD.
Patients with asthma can be triggered by extreme weather events such as
wildfires, underscoring the importance of research that prepares
patients and providers for the health impacts of a changing climate.
The Lung Associations supports $100 million for climate change and
human health research within NIEHS.
Thank you for your consideration of our recommendations.
[This statement was submitted by Harold P. Wimmer, 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 the FY 2023 budget for the
National Center for Complementary and Integrative Health (NCCIH) within
the National Institutes of Health (NIH). We also encourage additional
support for the Centers for Medicare and Medicaid Services (CMS) to
implement and disseminate the recommendations of the 2019 HHS ``Pain
Management Task Force (PMTF)'', which include utilization of massage
therapy for pain management.
Established in 1943 and numbering over 95,000 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 46 States and the District of Columbia.
The impact of COVID restrictions on patient access to health care
for a variety of pain conditions is being felt now throughout the
health care system. Opioid and substance abuse rates have increased.
While there is no single solution to the opioid crisis, massage therapy
demonstrably reduces reliance on opioids to address pain.
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.
As well, massage therapy is specifically supported in the May 2019
final report of the PMTF, and is part of the ``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.
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.
We would like to highlight that 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 health care
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. Research will
continue to identify the optimal benefits of massage for particular
demographic groups, including patients as young as infants up to
Medicare beneficiaries. And, we need to better understand the
underlying mechanisms of pain, and how and why pain manifests
differently for different patients.
Maintaining a robust Federal research program at NCCIH dedicated to
advancing massage therapy is vital, and health care providers need to
be aware of the value of massage therapy in order for research findings
to be put in action. For this reason, we believe 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. It is equally important that public and
provider awareness of the known benefits of massage therapy be
optimized, and we encourage additional support by this Committee for
CMS to implement and disseminate the PMTF's report and recommendations.
Thank you again for the opportunity to provide this statement.
______
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
sustained budget increases over the past several years have allowed the
agency to support biomedical discoveries and innovations that drive the
development of the next generation of therapies. The existing
Institutes and Centers at the NIH rely on consistent and steady funding
growth to keep pace with the inflation of research costs and it is
absolutely essential that the NIH continues to provide robust support
for such investigator-driven research. Therefore, the APS urges you to
sustain this vital effort by providing the NIH with a base budget of at
least $50 billion in fiscal year (FY) 2023.
While APS supports the goals of the new Advanced Research Project
Agency for Health (ARPA-H) (ARPA-H), it is critical that any funding
provided for this new program does not come at the expense of the NIH's
fundamental research efforts. The ARPA-H budget should therefore be in
addition to the $50 billion base budget.
The NIH is the Nation's largest funder of biomedical research. More
than 80 percent of the agency's funding supports extramural research,
largely awarded through competitive grants. These grants fuel economic
activity and job creation in every State. NIH funding in 2021 supported
over 550,000 jobs and generated an estimated $94 billion in economic
activity.\1\ The discoveries that emerge from NIH-supported basic and
translational research provide the foundation for new drugs and
therapies and prepare our Nation to confront challenging public health
threats such as obesity and diseases associated with an aging
population.
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The historically robust support of the NIH and other Federal
research agencies by Congress is a primary reason the US is the global
leader in biomedical research. However, the rate of growth of Federal
funding for research lags behind that of some other countries,
including China.\2\ Unless the US prioritizes investments in science,
the Nation risks losing its edge in highly competitive technology
driven industries.
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While the private sector brings the majority of new treatments to
the market, it relies on the breakthroughs from federally funded
research to identify new targets and strategies to treat diseases. This
partnership between industry and academic research has been key for
decades of success of the American biomedical industry. A study
published in the Proceedings of the National Academy of Sciences found
that every single one of the 210 new pharmaceuticals approved by the
FDA between 2010 and 2016 depended on research funded by the NIH.\3\
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The NIH has proven its value as an institution over the past
several decades. The rapid development of effective and safe COVID-19
vaccines was possible only because of many previous years of
fundamental research supported by NIH. Other achievements include
improvements in diagnostics, new cancer treatment options, and a better
understanding of antibiotic resistance. The NIH also plays an important
role in training the next generation of scientists by supporting
trainees with individual fellowships and institutional grants as they
complete their graduate degrees and seek the post-doctoral training
necessary to pursue successful independent research careers.
Our public health system continues to face significant challenges.
COVID-19 cases have decreased, but hospitals continue to see new
infections. Millions of Americans potentially face long-term health
effects due to COVID-19. In addition, our aging population will face
increasing rates of conditions such as heart disease, diabetes,
arthritis, kidney failure, 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 $50
billion in FY 2023, with additional funds for ARPA-H provided in
addition to that amount.
Physiology is a broad area of scientific inquiry that focuses on
how molecules, cells, tissues and organs function in health and
disease. The American Physiological Society connects a global,
multidisciplinary community of more than 10,000 biomedical scientists
and educators as part of its mission to advance scientific discovery,
understand life and improve health. The Society drives collaboration
and spotlights scientific discoveries through its 16 scholarly journals
and programming that support researchers and educators in their work.
______
Prepared Statement of the American Psychological Association Services
The American Psychological Association (APA) is the largest
scientific and professional organization representing psychology in the
United States, with more than 133,000 researchers, educators,
clinicians, consultants, and students as its members. Our mission is to
promote the advancement, communication, and application of
psychological science and knowledge to benefit society and improve
lives.
Many programs in the Labor-HHS-Education Appropriations bill are
critical to strengthening the mental health workforce, supporting
psychology-based research and education, and improving access to needed
mental and behavioral health services, particularly for underserved
communities. As the COVID-19 pandemic continues to present broad
challenges for our Nation in both the short and long term, Federal
investments are needed to bolster research, expand equitable access to
primary and mental health services, and support data-informed
approaches to education and public welfare at all levels. To boost
critical research funding, support the psychology workforce, improve
access to mental and behavioral health services across the lifespan,
and address social determinants of health, APA requests the following
funding levels for fiscal year 2023 within the U.S. Department of
Health and Human Services, U.S. Department of Education, and U.S.
Department of Labor.
Boosting Critical Research Funding:
APA requests at least $40.048 billion for NIH in fiscal year 2023,
an increase of $4.1 billion ($3.5 billion or 7.9 percent in NIH
appropriation plus funding from the 21st Century Cures Act for specific
initiatives) above the fiscal year 2022 funding level. This is a
critical year for NIH to expand its support of youth mental health
research, including work on the potential harms and benefits of social
media. APA encourages the Committee to resist calls to limit the
availability or use of non-human animal models in research, and to
ensure this research continues to be conducted appropriately and
ethically. As an association with a longstanding history of devoting
attention to and advancing diversity, equity, inclusion, and
accessibility related issues, APA strongly believes these factors are
critical to advancing biomedical, behavioral, and psychological
research supported by the NIH.
APA recommends at least $815 million for the Institute of Education
Sciences (IES), which supports and disseminates scientific evidence on
which to base education policy and practice and funds innovative
research into many aspects of teaching and learning. This sum is
necessary to fully support the education research and statistical
infrastructure essential to education policy and practice.
Finally, APA urges the Committee to provide $60 million for gun
violence research in fiscal year 2023, $35 million to the CDC and $25
million to the NIH to conduct public health research into firearm
morbidity and mortality prevention. This research is fundamental to
helping our Nation better understand and address our gun violence
public health crisis.
Supporting the Psychology Workforce:
The nation's mental and behavioral health workforce must be
expanded to adequately respond to the long-term mental health and
substance use disorder ramifications of the COVID-19 pandemic,
particularly the needs of long-underserved populations like communities
of color and older adults. This includes foundational investments in
higher education, as well as workforce training programs that support
the integration of behavioral healthcare. To address this, APA supports
increased funding for the following programs within the Department of
Education, and HHS' Health Resources and Services Administration (HRSA)
and Substance Abuse and Mental Health Services Administration (SAMHSA).
Given the heavy burden of student loan debt, APA supports added
investments in grant programs for graduate study within the Department
of Education, including $35 million for the Graduate Assistance in
Areas of National Need (GAANN) Program. Recent funding cycles marked
the first time in nearly a decade where psychology was among the
designated areas of national need under this program. As the mental
health impact of the pandemic continues to unfold, APA requests that
the Committee again direct the Secretary to include academic areas that
fall under the Classification of Instructional Programs (CIP) 51.15
Mental Health Services in the next grant competition.
Within HRSA, APA joins the Mental Health Liaison Group (MHLG) in
urging the Committee to provide $30 million for the Graduate Psychology
Education Program; $225.8 million for the Behavioral Health Workforce
Education and Training (BHWET) Programs; and $38 million for the Mental
and Substance Use Disorder Workforce Training Demonstration, including
the Integrated Substance Use Disorder Program (ISTP). These essential
programs increase work to increase our Nation's supply of health
service psychologists trained to provide integrated services to high-
need, underserved populations in rural and urban communities. 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).
Within SAMHSA, APA requests $25 million for the Minority Fellowship
Program (MFP). This increase will support the program's dual mission to
both increase the diversity of the mental and behavioral health
workforce while improving access to mental health and substance use
disorder services in underserved communities.
Improving Access to Mental and Behavioral Health Care Across the
Lifespan:
Given the rise in COVID-related mental health concerns, APA joins
MHLG in requesting $1.7 billion for SAMHSA's Community Mental Health
Block Grant (MHBG) and $3 billion for the Substance Abuse Prevention
and Treatment (SAPT) Block Grant in fiscal year 2023. APA is also
asking the Committee to include a new 10 percent set aside for
prevention and early intervention in the MHBG, similar to the SAPT set-
aside. This would include growing school-based and community
initiatives to address mental health before a person is deemed SED/SMI,
which is the current statutory language for using block grant funding.
To address rising suicide rates and ensure proper implementation of
988 as the Nationwide number for the National Suicide Prevention
Lifeline network, we urge the Committee to provide $140 million for the
National Suicide Prevention Lifeline, $560 million for the 988/Lifeline
Crisis Call Centers, $10 million for the Behavioral Health Crisis and
988 Coordinating Office, $200 million for the 988 Public Awareness
Campaign, and $100 million for the Mental Health Crisis Response
Partnership Program. Additionally, we ask the Committee to include $37
million for the State/Tribal Youth Suicide Prevention Program, $12
million for the Campus Mental and Behavioral Health Program, and $9.3
million for the Suicide Prevention Resource Center.
To ensure that our K-12 students receive a well-rounded education,
and access to school-based mental health services and programs that
foster safe and healthy schools, APA requests $2 billion for Title IV-
A, the Student Support and Academic Enrichment (SSAE) block grant and
$244 million for Project AWARE. Additionally, to increase the number of
mental health providers working in school settings, APA requests $1
billion for the Safe Schools National Activities Program in order to
support new competitions for the School Based Mental Health Services
Professional Demonstration Grant and the School-Based Mental Health
Services Grant Program. APA also urges the Committee to include $16.2
billion for Part B (Grants to States) of the Individuals with
Disabilities Education Act (IDEA) to help provide an equitable
education for students with disabilities.
To prevent maternal deaths, eliminate inequities in maternal health
outcomes, and improve maternal health, APA urges the committee to
prioritize the highest possible funding level for essential public
health programs, including the Maternal and Child Health Services Block
Grant and Healthy Start at CDC; Safe Motherhood and Infant Health at
CDC; and research into pregnancy at NIH. In addition, APA requests $100
million for maternal mental health equity grant programs.
Finally, APA urges the Committee to provide much-needed funding to
support Mental Health Parity and Addiction Equity Act (MHPAEA)
enforcement. Within the DOL's Employee Benefits Security
Administration, APA requests $27.5 million for MHPAEA enforcement, with
10 percent allocated to the Office of the Solicitor for parity
litigation. To support MHPAEA enforcement within HHS, APA requests $125
million for CMS' Center for Medicaid and CHIP Services (CMCS).
Addressing Social Determinants of Health & Social Safety Net:
Within HHS' Administration for Children and Families, APA supports
$1.7 billion for the Social Services Block Grant, which provides vital
social services, such as protective services agencies and special
services to people with disabilities. In addition, APA urges the
Committee to provide $12.2 billion for the Head Start Program, $7.6
billion for the Child Care and Development Block Grant, $450 million
for Preschool Development Grants, and $500 million for CAPTA Title I to
support State child abuse prevention and treatment.
To expand the reach of Federal school-based health education, APA
requests $100 million for the CDC Division of Adolescent and School
Health (DASH), to increase access to health services, implement
evidence-based sexual health education, and foster supportive
environments for young people to learn.
APA also supports $160 million for the SAMHSA Minority AIDS
Initiative to expand efforts at preventing domestic HIV transmission
and to increase treatment options for those living with co-morbid
conditions.
fiscal year 2023 requested report language
Health Resources and Services Administration
Graduate Psychology Education [GPE] Program
U.S. Department of Health & Human Services Health Resources and
Services Administration (HRSA) Interdisciplinary Community-Based
Linkages
Mental and Behavioral Health
The Committee recommendation includes $30 million for the
interprofessional Graduate Psychology Education (GPE) Program to
increase the number of health service psychologists trained to provide
integrated services to high-need, underserved populations in rural and
urban communities. The Committee recognizes the severe impact of COVID-
19 on Americans' mental and behavioral health and urges HRSA to
strengthen investments in the training of health service psychologists
to help meet these demands.
National Institutes of Health
NIMH: Research on Youth Mental Health and Disparities
The Committee is encouraged by the work of NIMH to support research
on issues related to youth mental health, including among youth of
color and underserved LGBTQ+ and those with disabilities, and
appreciates NIMH's work on a 10-year strategic plan to eliminate racial
mental health disparities. From within the increase of $---- that the
Committee has provided NIMH, the Institute is directed to use $50
million to lead a multi-institute research collaboration including
NICHD and NIMHD to guide preventive measures, targeting of
interventions, improved treatments, and long-term recovery. This
collaboration should sponsor fundamental and applied research including
social, behavioral, cognitive and developmental research, to build
resilience, increase our communities' capacity to identify and care for
young people at risk and those in crisis, and improve the targeting and
delivery of clinical and community-based mental health interventions.
Centers for Disease Control and Prevention
The Committee is encouraged by the Administration's National COVID-
19 Preparedness Plan strong emphasis on COVID-19 health equity and data
collection. According to the plan, the Administration will continue to
prioritize providing equitable access to COVID-19 health care and
public health resources. Central to achieving this goal is continued
progress in modernizing national disease surveillance and building the
capacity at Centers for Disease Control and Prevention (CDC) and State
and local health jurisdictions. The committee asks the Department of
Health and Human Services (HHS) to provide a report detailing the CDC's
progress toward disaggregating COVID-19 surveillance data by race,
ethnicity, geography, disability status, sexual orientation, gender
identity and other factors, including mental health conditions and
substance use.
[This statement was submitted by Katherine B. McGuire, Chief
Advocacy Officer, American Psychological Association Services, Inc.]
______
Prepared Statement of the American Psychological Association
The American Psychological Association (APA) is the largest
scientific and professional organization representing psychology in the
United States, with more than 133,000 researchers, educators,
clinicians, consultants, and students as its members. Our mission is to
promote the advancement, communication, and application of
psychological science and knowledge to benefit society and improve
lives.
Many programs in the Labor-HHS-Education Appropriations bill are
critical to strengthening the mental health workforce, supporting
psychology-based research and education, and improving access to needed
mental and behavioral health services, particularly for underserved
communities. As the COVID-19 pandemic continues to present broad
challenges for our Nation in both the short and long term, Federal
investments are needed to bolster research, expand equitable access to
primary and mental health services, and support data-informed
approaches to education and public welfare at all levels. To boost
critical research funding, support the psychology workforce, improve
access to mental and behavioral health services across the lifespan,
and address social determinants of health, APA requests the following
funding levels for fiscal Year23 within the U.S. Department of Health
and Human Services, U.S. Department of Education, and U.S. Department
of Labor.
Boosting Critical Research Funding:
APA requests at least $40.048 billion for NIH in FY 23, an increase
of $4.1 billion ($3.5 billion or 7.9 percent in NIH appropriation plus
funding from the 21st Century Cures Act for specific initiatives) above
the FY 22 funding level. This is a critical year for NIH to expand its
support of youth mental health research, including work on the
potential harms and benefits of social media. APA encourages the
Committee to resist calls to limit the availability or use of non-human
animal models in research, and to ensure this research continues to be
conducted appropriately and ethically. As an association with a
longstanding history of devoting attention to and advancing diversity,
equity, inclusion, and accessibility related issues, APA strongly
believes these factors are critical to advancing biomedical,
behavioral, and psychological research supported by the NIH.
APA recommends at least $815 million for the Institute of Education
Sciences (IES), which supports and disseminates scientific evidence on
which to base education policy and practice and funds innovative
research into many aspects of teaching and learning. This sum is
necessary to fully support the education research and statistical
infrastructure essential to education policy and practice.
Finally, APA urges the Committee to provide $60 million for gun
violence research in FY 23, $35 million to the CDC and $25 million to
the NIH to conduct public health research into firearm morbidity and
mortality prevention. This research is fundamental to helping our
Nation better understand and address our gun violence public health
crisis.
Supporting the Psychology Workforce:
The nation's mental and behavioral health workforce must be
expanded to adequately respond to the long-term mental health and
substance use disorder ramifications of the COVID-19 pandemic,
particularly the needs of long-underserved populations like communities
of color and older adults. This includes foundational investments in
higher education, as well as workforce training programs that support
the integration of behavioral healthcare. To address this, APA supports
increased funding for the following programs within the Department of
Education, and HHS' Health Resources and Services Administration (HRSA)
and Substance Abuse and Mental Health Services Administration (SAMHSA).
Given the heavy burden of student loan debt, APA supports added
investments in grant programs for graduate study within the Department
of Education, including $35 million for the Graduate Assistance in
Areas of National Need (GAANN) Program. Recent funding cycles marked
the first time in nearly a decade where psychology was among the
designated areas of national need under this program. As the mental
health impact of the pandemic continues to unfold, APA requests that
the Committee again direct the Secretary to include academic areas that
fall under the Classification of Instructional Programs (CIP) 51.15
Mental Health Services in the next grant competition.
Within HRSA, APA joins the Mental Health Liaison Group (MHLG) in
urging the Committee to provide $30 million for the Graduate Psychology
Education Program; $225.8 million for the Behavioral Health Workforce
Education and Training (BHWET) Programs; and $38 million for the Mental
and Substance Use Disorder Workforce Training Demonstration, including
the Integrated Substance Use Disorder Program (ISTP). These essential
programs increase work to increase our Nation's supply of health
service psychologists trained to provide integrated services to high-
need, underserved populations in rural and urban communities. 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).
Within SAMHSA, APA requests $25 million for the Minority Fellowship
Program (MFP). This increase will support the program's dual mission to
both increase the diversity of the mental and behavioral health
workforce while improving access to mental health and substance use
disorder services in underserved communities.
Improving Access to Mental and Behavioral Health Care Across the
Lifespan:
Given the rise in COVID-related mental health concerns, APA joins
MHLG in requesting $1.7 billion for SAMHSA's Community Mental Health
Block Grant (MHBG) and $3 billion for the Substance Abuse Prevention
and Treatment (SAPT) Block Grant in fiscal Year23. APA is also asking
the Committee to include a new 10 percent set aside for prevention and
early intervention in the MHBG, similar to the SAPT set-aside. This
would include growing school-based and community initiatives to address
mental health before a person is deemed SED/SMI, which is the current
statutory language for using block grant funding.
To address rising suicide rates and ensure proper implementation of
988 as the Nationwide number for the National Suicide Prevention
Lifeline network, we urge the Committee to provide $140 million for the
National Suicide Prevention Lifeline, $560 million for the 988/Lifeline
Crisis Call Centers, $10 million for the Behavioral Health Crisis and
988 Coordinating Office, $200 million for the 988 Public Awareness
Campaign, and $100 million for the Mental Health Crisis Response
Partnership Program. Additionally, we ask the Committee to include $37
million for the State/Tribal Youth Suicide Prevention Program, $12
million for the Campus Mental and Behavioral Health Program, and $9.3
million for the Suicide Prevention Resource Center.
To ensure that our K-12 students receive a well-rounded education,
and access to school-based mental health services and programs that
foster safe and healthy schools, APA requests $2 billion for Title IV-
A, the Student Support and Academic Enrichment (SSAE) block grant and
$244 million for Project AWARE. Additionally, to increase the number of
mental health providers working in school settings, APA requests $1
billion for the Safe Schools National Activities Program in order to
support new competitions for the School Based Mental Health Services
Professional Demonstration Grant and the School-Based Mental Health
Services Grant Program. APA also urges the Committee to include $16.2
billion for Part B (Grants to States) of the Individuals with
Disabilities Education Act (IDEA) to help provide an equitable
education for students with disabilities.
To prevent maternal deaths, eliminate inequities in maternal health
outcomes, and improve maternal health, APA urges the committee to
prioritize the highest possible funding level for essential public
health programs, including the Maternal and Child Health Services Block
Grant and Healthy Start at CDC; Safe Motherhood and Infant Health at
CDC; and research into pregnancy at NIH. In addition, APA requests $100
million for maternal mental health equity grant programs.
Finally, APA urges the Committee to provide much-needed funding to
support Mental Health Parity and Addiction Equity Act (MHPAEA)
enforcement. Within the DOL's Employee Benefits Security
Administration, APA requests $27.5 million for MHPAEA enforcement, with
10 percent allocated to the Office of the Solicitor for parity
litigation. To support MHPAEA enforcement within HHS, APA requests $125
million for CMS' Center for Medicaid and CHIP Services (CMCS).
Addressing Social Determinants of Health & Social Safety Net:
Within HHS' Administration for Children and Families, APA supports
$1.7 billion for the Social Services Block Grant, which provides vital
social services, such as protective services agencies and special
services to people with disabilities. In addition, APA urges the
Committee to provide $12.2 billion for the Head Start Program, $7.6
billion for the Child Care and Development Block Grant, $450 million
for Preschool Development Grants, and $500 million for CAPTA Title I to
support State child abuse prevention and treatment.
To expand the reach of Federal school-based health education, APA
requests $100 million for the CDC Division of Adolescent and School
Health (DASH), to increase access to health services, implement
evidence-based sexual health education, and foster supportive
environments for young people to learn.
APA also supports $160 million for the SAMHSA Minority AIDS
Initiative to expand efforts at preventing domestic HIV transmission
and to increase treatment options for those living with co-morbid
conditions.
fiscal year 2023 requested report language
Health Resources and Services Administration
Graduate Psychology Education [GPE] Program
U.S. Department of Health & Human Services Health Resources and
Services Administration (HRSA) Interdisciplinary Community-
Based Linkages
Mental and Behavioral Health
The Committee recommendation includes $30 million for the
interprofessional Graduate Psychology Education (GPE) Program to
increase the number of health service psychologists trained to provide
integrated services to high-need, underserved populations in rural and
urban communities. The Committee recognizes the severe impact of COVID-
19 on Americans' mental and behavioral health and urges HRSA to
strengthen investments in the training of health service psychologists
to help meet these demands.
National Institutes of Health
NIMH: Research on Youth Mental Health and Disparities
The Committee is encouraged by the work of NIMH to support research
on issues related to youth mental health, including among youth of
color and underserved LGBTQ+ and those with disabilities, and
appreciates NIMH's work on a 10-year strategic plan to eliminate racial
mental health disparities. From within the increase of $---------- that
the Committee has provided NIMH, the Institute is directed to use $50
million to lead a multi-institute research collaboration including
NICHD and NIMHD to guide preventive measures, targeting of
interventions, improved treatments, and long-term recovery. This
collaboration should sponsor fundamental and applied research including
social, behavioral, cognitive and developmental research, to build
resilience, increase our communities' capacity to identify and care for
young people at risk and those in crisis, and improve the targeting and
delivery of clinical and community-based mental health interventions.
Centers for Disease Control and Prevention
The Committee is encouraged by the Administration's National COVID-
19 Preparedness Plan strong emphasis on COVID-19 health equity and data
collection. According to the plan, the Administration will continue to
prioritize providing equitable access to COVID-19 health care and
public health resources. Central to achieving this goal is continued
progress in modernizing national disease surveillance and building the
capacity at Centers for Disease Control and Prevention (CDC) and State
and local health jurisdictions. The committee asks the Department of
Health and Human Services (HHS) to provide a report detailing the CDC's
progress toward disaggregating COVID-19 surveillance data by race,
ethnicity, geography, disability status, sexual orientation, gender
identity and other factors, including mental health conditions and
substance use.
[This statement was submitted by Katherine B. McGuire, Chief
Advocacy Officer, American Psychological Association Services, Inc.]
______
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 request of at least $11 billion for the Centers for Disease
Control and Prevention and at least $9.8 billion for the Health
Resources and Services Administration in FY 2023. Robust funding for
CDC and HRSA programs that promote public health and prevention,
support surveillance of infectious disease and bolster America's public
health workforce will be critical in addressing both the short-term and
long-term health impacts of COVID-19 and the many other health
challenges we face as a nation. We are thankful for the emergency
supplemental funding provided to CDC and HRSA to support the Nation's
response to COVID-19 and we urge the committee to ensure that all CDC
and HRSA programs are adequately funded in FY 2023.
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 urge a
funding level of at least $11 billion in FY 2023. We are grateful for
the important increases provided for CDC programs in FY 2022 and for
the critical emergency funding provided to the agency to address COVID-
19. We 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 nearly 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 as
well as man-made and natural disasters. From playing a leading role in
aiding in the surveillance, detection and mitigation of the COVID-19
pandemic in the U.S. and globally, to monitoring and investigating
other disease outbreaks, to pandemic flu preparedness, CDC is the
Nation's--and a global--expert resource and response center,
coordinating communications and action and serving as the laboratory
reference center. States, communities and international partners rely
on CDC for accurate information, direction and resources to ensure they
can prepare, respond and recover from a crisis or disease outbreak.
We strongly support the president's budget request for an
additional $400 million, for a total of $600 million, in funding to
bolster core public health infrastructure and capacity at the federal,
state, territorial and local levels. This flexible funding is critical
to addressing the gaps in core public health infrastructure and
capacity at all levels as well as ensuring our Nation's health
departments are able to attract and retain experienced leaders and
respond to future public health emergencies and disease outbreaks.
Sustained, flexible funding is critical to rebuilding and strengthening
the Nation's public health system.
CDC serves as the lead agency for bioterrorism and other public
health emergency preparedness and response programs. 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 during public health
emergencies. We also urge you to provide adequate funding for CDC's
infectious disease, laboratory and disease detection capabilities 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. Your continued support for CDC's public
health Data Modernization Initiative is critical to ensuring we have
both the world-class data workforce and data systems that are ready for
the next public health emergency.
We thank Congress for providing CDC with dedicated funding for
firearm morbidity and mortality prevention research in FY 2020 and FY
2021 and we strongly urge you to increase this funding in FY 2023 to
$35 million for CDC and $25 million for NIH, as requested in President
Biden's FY 2023 budget proposal. This will allow CDC to continue to
support 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 $401.85 million for NCEH in FY 2023,
including $110 million for CDC's Climate and Health program, as
requested in President Biden's FY 2023 budget request. Climate change
is threating our health in many ways 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 provide funding to all 50 States
and to support additional, cities, counties and Tribes to help them
prepare for and respond to the health impacts of climate change in
their communities.
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 costliest 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 strongly urge increased
investments in these critical programs that are essential to reducing
death, disability and health care costs. In particular, we urge your
support for the president's request of $153 million for CDC's Social
Determinants of Health Program. This increased funding would allow CDC
to provide public health departments, academic institutions and
nonprofit organizations funding and tools to support cross sector
efforts to address the impact that social determinants of health such
as unsafe and unstable housing, income insecurity, lack of
transportation, and underlying health inequities have on the health of
their communities.
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 health care and services; fostering a health care
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
health care system.
We are grateful for the increases provided for HRSA programs in FY
2022 and for the emergency supplemental funding to battle the COVID-19
pandemic, but HRSA's discretionary budget authority is far too low to
effectively address the Nation's current public health and health care
needs. We recommend Congress build upon the important increases they
provided HRSA in FY 2022 and provide at least $9.8 billion for the
Health Resources and Services Administration in FY 2023.
HRSA programs and grantees are providing innovative and successful
solutions to some of the Nation's greatest health care challenges
including the rise in maternal mortality, the severe shortage of health
professionals, the high cost of health care and behavioral health
issues related to substance use disorders- including opioid misuse.
Additional funding will allow HRSA to build upon these successes and
pave the way for new achievements by supporting critical HRSA programs,
including:
--Primary Health Care that supports more than 13,500 health center
sites which provide high quality primary care services to
nearly 29 million people and reduce barriers such as cost, lack
of insurance, distance and language for their patients.
--Health Workforce supports the health workforce across the training
continuum by strengthening the workforce and connecting skilled
professionals to communities in need. Programs such as the
Public Health Training Centers assess and respond to critical
workforce needs through training, technical assistance and
student support.
--Maternal and Child Health programs support patient-centered,
evidence-based programs that optimize health, minimize
disparities and improve health promotion and health care access
for medically and economically vulnerable women, infants and
children.
--Ryan White HIV/AIDS programs provides medical care and treatment
services to over half a million people living with HIV. Ryan
White programs effectively engage clients in comprehensive care
and treatment, including increasing access to HIV medication,
which has resulted in 89.4 percent of clients achieving viral
suppression, compared to just 65.5 percent of all people living
with HIV nationwide.
--Title X Family Planning program reduces unintended pregnancy rates,
limits transmission of sexually transmitted infections and
increases early detection of breast and cervical cancer by
ensuring access to family planning and related preventive
health services to millions of women, men and adolescents.
--Rural Health supports community 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 and promote the use of health
information technology and telehealth.
HRSA has also been active in the COVID-19 pandemic response,
awarding billions of dollars to health centers to administer COVID-19
tests and reimbursing over $18 billion for testing and treatment
provided to uninsured individuals.
In closing, we emphasize that the public health system requires
stronger financial investments at every stage. It is critical that
Congress increase its investments in CDC and HRSA programs to enable
the Nation 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 Red Cross and the United Nations
Foundation
Chair Patty Murray, Ranking Member Roy Blunt, and Members of the
subcommittee, the American Red Cross and the United Nations Foundation
appreciate the opportunity to submit testimony. We are grateful for the
leadership that Congress has shown in funding CDC global health
activities in prior years, and we urge Congress to protect and
strengthen funding for the agency's global measles elimination
activities for FY 2023 at $80 million, which is part of CDC's overall
Global Immunization Division line.
covid-19 pandemic and global health security
COVID-19 has had an unprecedented impact on global immunization
programs. From 2019 to 2020 the number of children receiving a first
dose of measles containing vaccine (MCV1) decreased in five out of the
six world regions, resulting in an overall drop in the global
vaccination coverage rate from 86 percent to 84 percent over the
period. It is estimated that more than 22 million children did not
receive MCV1 through routine immunization, the highest increase in
missed children since 2000. In addition, at least 93 million
individuals did not receive MCV1 because of COVID-19-related
postponements of 24 preventative measles vaccination campaigns
scheduled during the year.
The pandemic also significantly disrupted measles surveillance and
disease reporting. The number of lab specimens for suspected measles
cases submitted for testing was the lowest in over a decade. Many
countries did not provide reports to WHO and UNICEF on measles
incidence, and of those that did report, only 32 percent achieved the
measles surveillance sensitivity indicators needed to consistently
detect cases and outbreaks. Thus, while available data indicates the
number of reported measles cases did not increase over the past 2
years, this is likely due to underreporting that has led to significant
surveillance gaps.
These factors paint an alarming picture of a growing immunity gap
setting the stage for an increase in measles outbreaks and accompanying
loss of life from an easily preventable disease. Because the measles
virus is one of the most transmissible human viruses--with each
infectious person capable of infecting as many as 18 unvaccinated
individuals--a drastic increase in measles outbreaks around the world
is anticipated. Failing to close these immunity gaps will leave
millions of children at risk and will compromise U.S. global health
security by disrupting economies, trade, and country stability, as well
as increasing the likelihood of the virus infecting U.S. communities.
Global measles investments through the CDC Global Immunization Division
will quickly close these global immunity gaps and strengthen
surveillance systems. These investments will also help protect progress
over the last decade in reducing maternal and child mortality and
morbidity, as well as preserve and enhance the broader global
immunization infrastructure. With this context in mind, we respectfully
provide the following justification for continued robust investment in
CDC's global measles and rubella elimination efforts.
why measles and rubella?
U.S. leadership has played a pivotal role in saving the lives of
31.7 million children between 2000 and 2020, partnering with the
Measles & Rubella Initiative to drive measles deaths down by 94
percent. Measles is a highly contagious disease that can cause
blindness, swelling of the brain, and death. Nine out of 10 people who
are not immune to measles will contract the disease if they come in
contact with a contagious person, and the measles virus can cause long-
term damage to the immune system. Every day, roughly 166 children still
die of measles-related complications.
The rubella virus is a leading infectious cause of birth defects in
the world despite availability of an affordable, effective vaccine
since 1969. When rubella occurs early in a pregnancy, it can cause
miscarriages, stillbirths, or a constellation of severe birth defects
as part of congenital rubella syndrome (CRS) that can impact vision,
hearing, heart health, overall development. Each year roughly 100,000
babies are born with CRS despite the vaccine preventable nature of the
disease.
Since 2000, measles vaccines have been the single greatest
contribution in reducing preventable child deaths globally. We have had
safe and effective vaccines against both rubella and measles for over
50 years, but unfortunately vaccination rates globally have stagnated
for over a decade due to inadequate resources.
domestic implications
In the U.S., 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. In 2019, for example, 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 were
linked to importation of the disease by unvaccinated U.S. residents
returning from trips abroad from countries with active outbreaks.
Controlling measles and rubella around the world reduces the likelihood
of similar disease importations in the future.
Responding to measles outbreaks is resource intensive for health
systems. In the U.S. outbreaks are costly for State and local health
departments to detect and respond to and have economic productivity
costs. In 2019, in response to the measles outbreak in New York City,
the NYC Department of Health spent over $6 million and dedicated more
than 500 staff members to halt the spread of the disease which began
with a single imported cases from outside the country.
the measles & rubella initiative
The Measles & Rubella Initiative (M&RI)--which includes the
American Red Cross, CDC, UNICEF, the United Nations Foundation, and
WHO, all working in collaboration with Gavi, the Vaccine Alliance as
well as the Bill & Melinda Gates Foundation--supports countries to
prevent, identify, and respond to measles outbreaks through key
interventions like surveillance, supplementary vaccination campaigns,
and emergency response.
M&RI has achieved outstanding results by helping to vaccinate over
3 billion individuals in 88 countries since 2001, saving the lives of
more than 31.7 million children. In part due to M&RI, global measles
mortality has dropped 94 percent, from an estimated 1,072,800 deaths in
2000 to an approximately 60,700 in 2020 (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 95 percent.
Thanks to M&RI leadership, the majority of measles vaccination
campaigns have been able to reach more than 90 percent of their target
populations with health equity at the forefront to ensure that the most
vulnerable children are reached in communities that are underserve and
difficult to access. Countries recognize the opportunity that measles
vaccination campaigns provide in reaching mothers and young children
and integrating the campaigns with other life-saving health
interventions. These include administering vitamin A, which is crucial
for preventing blindness in under nourished children; de-worming
medicine to reduce malnutrition; doses of oral polio vaccines;
distributing insecticide treated bed nets to help prevent malaria; and
screening for malnutrition. The provision of multiple child health
interventions during a single, integrated campaign is far less
expensive than delivering the interventions separately and has a far
greater impact on a child's health.
In addition to the lifesaving benefits of the measles-rubella
vaccine, immunization makes sound economic sense, as in a low-income
country it costs roughly $2 to administer the combined measles and
rubella vaccine to a child. A 2016 Johns Hopkins University study
compared the costs for vaccinating against 10 disease antigens in 94
low- and middle-income countries between 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 found to be the greatest with $58 saved for every $1
invested.
Securing sufficient funding for measles and rubella-elimination
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 increasing measles vaccination coverage to 95 percent, the
required level to establish herd immunity. Implementation of timely
measles and rubella vaccination 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. The combined factors of a highly contagious
disease, growing immunity gaps exacerbated by COVID-19 disruptions, and
our highly interconnected world means measles is poised to spread
quickly, with devastating results that could even threaten 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 able to effectively reach and vaccinate
all its children.
the role of cdc in global measles mortality reduction
The CDC plays an essential role by providing support for
vaccination programs and surveillance to detect outbreaks early and
stop them at their source. An increase in resources for these and other
critical activities provided by the CDC is urgently needed to prevent
needless childhood deaths around the globe.
In 2020, thanks in part to U.S. funding through CDC, M&RI supported
the vaccination of approximately 129 million children 32 countries.
Funding for CDC permitted the provision of technical support to
Ministries of Health that 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 serving as the
leading worldwide reference laboratory for measles and rubella; and (4)
conducting operations research to guide cost-effective and high-quality
measles and rubella elimination programs.
The CDC Global Immunization Division, through which the M&RI is
funded, has been highly effective and we strongly support fully funding
this work. All the programs funded through the Global Immunization
Division budget line also help to build stronger health systems. As was
seen during the response to COVID-19, resources like the Global Measles
and Rubella Laboratory Network can be repurposed to quickly responded
other critical health issues. By building the capacity for measles and
rubella resources the U.S. is also building capacity for future
response efforts.
conclusion
Since fiscal Year2001, Congress has generously provided funding to
protect children and their families from the threat of measles and
rubella in developing countries, thereby also protecting the U.S.
population from the threat of measles importations. U.S. government
funding for global measles and rubella efforts, however, has remained
level since FY 2010 at $50 million, which due to inflation has
significantly lost purchasing power. Furthermore, the COVID-19 pandemic
has gravely disrupted immunization systems around the world, leaving
millions of children vulnerable to measles and other vaccine-
preventable diseases. We must quickly ``catch up'' vaccination coverage
rates to reach unvaccinated populations and prevent devastating measles
outbreaks.
Because of these factors, for fiscal Year2023 the American Red
Cross and United Nations Foundation respectfully request an increase of
$30 million to raise funding to $80 million, as part of the overall
funding for the entire Global Immunization Division account in FY 2023.
This investment will allow the CDC to help countries to close the
immunization gap created by COVID-19, strengthen global disease
detection capacity, safeguard the progress made over the last decade to
reduce maternal and child mortality, and protect Americans by
preventing measles cases and deaths in the U.S. 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 the
American National Red Cross and Peter Yeo, Senior Vice President United
Nations Foundation.]
______
Prepared Statement of the American Society for Engineering Education
summary
This written testimony is submitted on behalf of the American
Society for Engineering Education (ASEE) to the Senate subcommittee on
Labor, Health and Human Services, Education, and Related Agencies for
the official record. ASEE appreciates the Committee's support for the
Department of Education (ED) in Fiscal Year (FY) 2022 and asks you to
robustly fund student aid, teacher preparation, and STEM programs in FY
2022. Additionally, ASEE requests continued Federal funding to support
initiatives aimed at increasing the diversity of the STEM pipeline and
support for Minority-Serving Institutions (MSIs). The strong support of
the National Institutes of Health (NIH) in FY 2022 was greatly
appreciated and ASEE requests continued support of NIH. In addition,
ASEE is excited about the establishment of ARPA-H and its potential to
support transformative, high-reward technologies to transform health
and medicine.
written testimony
The American Society for Engineering Education (ASEE) advances
innovation, excellence, and access at all levels of education for the
engineering profession and is the only society representing the
country's schools and colleges of engineering and engineering
technology. Membership includes over 12,000 individuals hailing from
all disciplines of engineering and engineering technology including
educators, researchers, and students as well as industry and government
representatives. As the pre-eminent authority on the education of
engineering professionals, ASEE seeks to advance the development of
innovative approaches and solutions to engineering education and
advocates for equal access to engineering educational opportunities for
all.
Student Aid
Student aid and support programs like Pell Grants, Federal Work-
Study (FWS), Graduate Assistance in Areas of National Need (GAANN), and
others make higher education accessible and affordable for millions of
students. We appreciate the commitment the Biden Administration has
made to affordable education through its FY 2023 president's budget
request, which proposed doubling the Pell Grant by 2029. ASEE joins the
higher education community in requesting funding to support doubling
the maximum Pell Grant award to $13,000. Pell Grants are essential to
low-income students being able to afford higher education. These awards
are vital in helping students access the significant life and career
benefits that higher education provides. These benefits are especially
prevalent for engineering education, which provides a proven pathway to
the middle class, especially for students from low-income backgrounds.
ASEE requests funding for Federal Work Study (FWS) at $1.52 billion and
$1.09 billion for Supplemental Educational Opportunity Grant (SEOG).
These programs are need-based, and often this aid provides the
resources a student needs to complete their education. ASEE asks the
Committee to consider ways to support work-based learning, such as co-
operative education and apprenticeships, within the FWS program. ASEE
firmly believes in ensuring access to engineering and engineering
technology education for all students, not just those who can afford
it, which is why ensuring student aid programs for graduate students is
also very important. ASEE also requests funding of $35 million for the
Graduate Assistance in Areas of National Need (GAANN) program, which
provides fellowships, through academic departments and programs of
institutions of higher education, to assist graduate students with
excellent records who demonstrate financial need to pursue graduate
education in critical areas of need for the U.S. workforce such as
engineering.
7Teacher Preparation
The need for well-prepared and content-confident teachers in early
childhood, elementary, and secondary education is high, particularly in
STEM subjects. The lack of teacher training focused on STEM, and
engineering in particular, is an important issue facing K-12 education.
Problem-based learning that incorporates engineering design and
analysis skills are often absent from teacher preparation and
professional development programs. ASEE supports vigorous funding for
Title II of the Elementary and Secondary Education Act (ESEA), which
supports the preparation and professional development of school
personnel, and Title II of the Higher Education Act, which supports
teacher preparation programs at institutions of higher education. ASEE
also supports President Biden's budget request proposal to invest $132
million in the Teacher Quality Partnership grant program and $20
million in the Augustus F. Hawkins Centers of Excellence grant program
in fiscal Year2023. Having a well-prepared, diverse K-12 STEM educator
workforce is absolutely essential to strengthening and growing the
domestic STEM workforce. Furthermore, Congress should consider efforts
to support teaching skills for STEM postsecondary faculty and include
partnerships between STEM disciplines and Schools of Education to
support STEM faculty and support for teaching and learning centers at
postsecondary institutions. Support of postsecondary faculty and their
promotion of STEM learning should utilize research-based methods. Our
future is dependent on today's students finding solutions to tomorrow's
problems. This can only be accomplished if those students have teachers
who are prepared to guide them in developing the knowledge and skills
needed to solve those problems.
STEM
Support for science, technology, engineering, and mathematics
(STEM) continues to grow and ASEE appreciates the support many STEM
programs received in FY 2022. ASEE supports funding for Title IV of the
Elementary and Secondary Education Act (ESEA) at its authorized amount
of $1.6 billion, which will allow States and school districts
additional resources to pursue STEM programs. ASEE supports robust
funding for STEM programs for higher education students including the
Hispanic-Serving Institutions (HSI) STEM and Minority Science and
Engineering Improvement (MSEIP) programs. The STEM workforce is a
driving force behind innovation and our economic development and needs
to be grown and diversified in the United States. These and other
programs targeted towards increasing the representation of historically
underrepresented populations, including women, will ensure a healthy
STEM workforce pipeline. Furthermore, ASEE supports the
Administration's proposal from the fiscal Year2023 budget request to
provide a $282 million increase above fiscal Year2021 enacted levels to
enhance institutional capacity at Minority-Serving Institutions and to
create a new $450 million grant program to expand the research capacity
of institutions that are historically underrepresented in the research
and development enterprise.
Career and Technical Education (CTE)
ASEE knows that high-quality Career and Technical Education (CTE)
prepares students for careers and further postsecondary education while
fulfilling employer needs in high-demand sectors of the economy. ASEE
supports CTE and wants to ensure best practices and high-quality
programs are embedded in its programs, for example through faculty
professional development and connections to the National Science
Foundation -supported Advanced Technological Education (ATE) programs.
ASEE also wants to strengthen pathways between CTE at the associate
degree level to 4-year engineering and engineering technology degrees.
ASEE believes that students should have lifelong options for continuing
study and career advancement and that CTE programs can help students
achieve their goals. In order for States and their CTE educators to
provide high-quality CTE opportunities for students and strengthen
pathways between two- and 4-year institutions of higher education, ASEE
urges Congress to robustly fund the Perkins Basic State Grant funding
program in fiscal Year2023 and encourage the program to build
connections with NSF's ATE program.
National Institutes of Health
The National Institutes of Health are a strong supporter of
engineering research through many institutes, especially the National
Institute of Biomedical Imaging and Bioengineering (NIBIB), the
National Cancer Institute (NCI), the National Institute of General
Medical Sciences (NIGMS), and the National Heart, Lung, and Blood
Institute (NHLBI). ASEE is grateful to the committee for its strong
bipartisan support of the NIH over many years and most recently in FY
2022 appropriations. NIBIB is the major NIH Institute focused on
engineering applications to human health and training the next
generation of biomedical engineers. NIBIB funding is critical for the
development of devices and tools that can improve the detection,
treatment, and prevention of disease, and also plays a critical role in
assessing the effectiveness of new drugs, diagnosis techniques, and
treatment procedures. NIBIB also supports training programs to enhance
and expand education and training for the next generation biomedical
engineering workforce. Through grant programs like the Enhancing
Science, Technology, and Math Education Diversity Research Education
Experiences, and Team-Based Design in Biomedical Engineering Education,
NIBIB is committed to supporting all stages of the biomedical
engineering career pathway and increasing the participation of
traditionally underrepresented groups in engineering. ASEE urges the
Committee to provide NIH with $49.048 billion in base funding FY 2023
so that NIBIB and other NIH institutes can continue to support critical
biomedical engineering research and training.
advanced research project agency for health
ASEE is excited about the establishment of the Advanced Research
Project Agency for Health (ARPA-H) and believe it will enable new
models for disruptive health innovation and enable development of
transformative health technologies. ASEE is encouraged by initial
planning at the Department of Health and Human Services (HHS) to give
ARPA-H independence, ensure it has a unique culture, and focus its
efforts on disease-agnostic platform technologies that have high
potential across many disease and health areas. Congress should
continue to encourage the development of a true risk-taking culture at
ARPA-H to enable high reward outcomes. ASEE urges the subcommittee to
ensure that any funding provided for ARPA-H supplements, and does not
supplant, the NIH's base budget funding. As noted above NIBIB and other
NIH institutes continue to support critical research and need robust
funding.
conclusion
Engineering and engineering technology academic programs play
critical roles in the STEM ecosystem. The requests made here support
the development of a skilled technical workforce, broadening
participation, and transdisciplinary study. Thank you for the
opportunity to submit this testimony.
[This statement was submitted by Adrienne R. Minerick Ph.D.,
President, and Norman Fortenberry, Sc.D., Executive Director, American
Society for Engineering Education.]
______
Prepared Statement of the American Society for Microbiology
The American Society for Microbiology (ASM) is the 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 $49 billion for the
National Institutes of Health (NIH) and $11 billion for the Centers for
Disease Control and Prevention (CDC) in fiscal year (FY) 2023. Within
the CDC budget, we request $175 million for the Advanced Molecular
Detection (AMD) program in the National Center for Emerging and
Zoonotic Infectious Diseases.
continuing to lead through a strong investment in the nih
We thank 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 Chair Murray, Ranking Member
Blunt and members of the Senate Appropriations subcommittee on Labor,
Health and Human Services, Education and Related Agencies for their
unwavering support for the NIH and leadership over the past several
years, during which they and their House counterparts have worked in a
bipartisan manner to place the NIH budget back on the path of
meaningful growth above inflation.
Thanks to a renewed commitment to NIH, researchers were able to
pivot when SARS-CoV-2 emerged and the race to develop tests, vaccines
and therapeutics commenced. Researchers built on decades of federally
funded basic science and technological advances to develop safe and
effective vaccines at record speed. This remarkable achievement has
reenergized existing and aspiring scientists worldwide, allowed our
country to begin moving past the pandemic, and demonstrated the power
of public-private partnerships. Continuing to provide 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 demands
that future infectious disease outbreaks will place on our society.
nih funding has transformed the microbial sciences
Even before the COVID-19 pandemic, investments in microbial
research at NIH led to great strides in protecting and improving human
health as illustrated by 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.
--Since 2007, the NIH has been on the forefront of supporting
microbiome research with the Common Fund's Human Microbiome
Project (HMP), which was formed to develop research resources
to study of microbial communities and how they impact human
health and disease. Microbiome research has increased over 40
times since the inception of the HMP, and the work engages over
20 NIH Institutes and Centers. This important research has had
implications for our understanding of microbiome interactions
in pregnancy and preterm birth, inflammatory bowel disease, and
diabetes, among other topics.
continued progress requires sustained funding and support for
investigators
Even in the face of the promise and progress highlighted above,
well known pathogens and antimicrobial resistance threaten our Nation's
health with serious economic and social ramifications. Seasonal flu
continues to cost the U.S. billions annually in direct medical costs
and lost productivity due to illness and claims the lives of thousands
of Americans each year. Through sustained funding to NIAID, scientists
continue the quest for a universal flu vaccine. Antimicrobial
resistance (AMR) is a daunting public health challenge and considered a
global crisis by the World Health Organization, the G20 and the United
Nations. Continued investment in research to better understand how
microbes become resistant, and develop more precise clinical
diagnostics, novel therapeutics and vaccines is greatly needed.
The COVID-19 pandemic has exacted a toll on the broader research
enterprise, especially early career investigators and those who were
unable to pivot to work on SARS-CoV-2. Pandemic-related laboratory
closures disrupted ongoing research, resulted in loss of animal
colonies and cell lines, and loss of laboratory positions. Experiments
had to be restarted, animal colonies repopulated, and fieldwork
rescheduled. While our Nation's research capacity has demonstrated it
can absorb shocks, the scale of this one was unprecedented in duration
and impact. We must continue to nurture the research pipeline and
workforce of tomorrow through sustained support for NIH and the
training it provides to the next generation of scientists.
cdc's indispensable role in preventing and controlling infectious
disease
The programs and activities supported by CDC are instrumental in
protecting the health of the American people. ASM appreciates the
extraordinary emergency funding provided to the agency in FY 2021 and
FY 2022 to meet the needs presented by the pandemic. However, had
Congress provided necessary support for CDC and public health
infrastructure over time, our country would have been in a better
position to address the public health crisis more effectively from the
start. With this in mind, we urge Congress to build on emergency
investments in FY 2023, including robust funding for the Data
Modernization Initiative and the Prevention and Public Health Fund. CDC
aids in surveillance, detection and prevention of global and domestic
outbreaks from SARS-CoV-2, to foodborne illness, 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. As we have seen over the course of the
pandemic, States, communities, and international partners rely on CDC
for accurate information, direction, and resources to ensure they
continue to be prepared in a crisis or outbreak.
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. The program has
played an indispensable role by leading genomic surveillance
efforts and sequencing of SARS-CoV-2 samples, especially aimed
at getting in front of emerging variants. We thank Congress for
providing transformational funding for AMD in the American
Rescue Plan Act, and with increased base funding, the AMD
program can continue to promote innovation, expand workforce
development, and enter into productive partnerships with
academic research institutions, state/local public health
agencies and commercial entiti. ASM requests $175 million for
AMD in FY 2023.
--Multiple programs support antimicrobial resistance, one of the most
daunting health challenges we face today. ASM requests funding
for the Antibiotic Resistance Solutions Initiative at $397
million, the National Healthcare Safety Network at $100
million, and the Division of Global Health Protection at $842.8
million, which 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. We urge you to consider additional funding for resources
to this area, particularly as we consider ways to bolster lab
capacity in times of public health emergency.
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 outbreaks.
[This statement was submitted by Allen Segal, Chief Advocacy
Officer, American Society for Microbiology.]
______
Prepared Statement of the American Society for Nutrition
Dear Chairwoman Murray and Ranking Member Blunt:
Thank you for the opportunity to provide testimony regarding Fiscal
Year (FY) 2023 appropriations. The American Society for Nutrition (ASN)
respectfully requests at least $49.048 billion dollars for the National
Institutes of Health (NIH) and $210 million dollars for the Centers for
Disease Control and Prevention/National Center for Health Statistics
(CDC/NCHS) in FY 2023. ASN is dedicated to bringing together the
world's top researchers to advance our knowledge and application of
nutrition, and has more than 8,000 members working throughout academia,
clinical practice, government, and industry.
national institutes of health (nih)
The NIH is the Nation's premier sponsor of biomedical research and
is the agency responsible for conducting and supporting the largest
percentage of federally funded basic and clinical nutrition research
with $3.2 billion in nutrition and obesity research in FY 2021.
Although nutrition and obesity research make up only about five 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.
Nevertheless, healthcare costs and risk factors for diet-related
diseases remain high. In fact, from 2019 to 2020, age-adjusted death
rates rose 4.1 percent for heart disease, 4.9 percent for stroke, 8.7
percent for Alzheimer disease, and 14.8 percent for diabetes.\1\ With
additional support for NIH, additional breakthroughs and discoveries to
improve the health of all Americans and reduce the economic burden of
diet-related diseases will be made possible.
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\1\ https://www.cdc.gov/nchs/products/databriefs/db427.htm.
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Investment in biomedical research generates new knowledge, improved
health, and leads to innovation and long-term economic growth. ASN
recommends at least $49.048 billion dollars for the NIH base budget in
FY 2023 to support NIH nutrition-related research that will lead to
important disease prevention and cures. This represents an increase of
$4.1 billion over the comparable FY 2022 funding level (an increase of
$3.5 billion or 7.9 percent in the NIH appropriation plus funding from
the 21st Century Cures Act for specific initiatives). ASN requests that
any funding for the new Advanced Research Projects Agency for Health
(ARPA-H) supplement our $49 billion recommendation for NIH's base
budget, rather than supplant the essential foundational investment in
the NIH.
A budget of $49 billion will allow NIH to provide adequate support
for the NIH Common Fund's Nutrition for Precision Health, powered by
the All of Us Research Program, while still providing much needed
increases to other parts of the portfolio. ASN strongly supports the
President's budget proposal of $97 million for the NIH Office of
Nutrition Research to advance nutrition science. This is an increase of
$96 million above FY 2022 enacted to promote health and reduce the
burden of diet-related diseases. By centrally coordinating
implementation of the Strategic Plan for NIH Nutrition Research, the
Office of Nutrition Research can support cross-cutting NIH nutrition
research developed in collaboration with Institutes and Centers that
already fund nutrition research. Increased support for nutrition
research will provide solutions ensuring nutrition security and access
to healthy food to prevent diet-related health disparities and promote
health equity for a variety of diet-related diseases and conditions,
such as cardiovascular disease, obesity, diabetes, and cancer. The
complexity of human nutrition demands that cutting edge data science
and system science methods be employed to move this field forward.
Funds will support new training programs in Artificial Intelligence for
Precision Nutrition that will focus on integration of related domains,
including machine learning, systems biology, systems science, Big Data,
and computational analytics to tackle complex biomedical challenges in
nutrition science. 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 (cdc nchs)
The National Center for Health Statistics, housed within the
Centers for Disease Control and Prevention, is the Nation's principal
health statistics agency. ASN recommends a FY 2023 funding level of
$210 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 but more than a decade of flat funding has taken
a significant toll on NCHS's ability to keep pace. $210 million
reflects an increase to NCHS's base budget of $30 million from its FY
2022 appropriation, reversing a decade of sequestration and restoring
the program to its FY 2010 funding level, adjusted for inflation.
The NCHS provides critical data on all aspects of our health care
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. The U.S. Department of Agriculture uses this data to develop
nutrition policies that guide multibillion dollar Federal food
assistance programs, and nutrition researchers use this valuable data
as well.
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. Additional
support would enable collection of more data on underrepresented
groups, such as pregnant and lactating women, and assessment of
nutritional status indicators for nutrients on which we have no, or
inadequate, information.
Thank you for the opportunity to submit testimony regarding FY 2023
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].
Sincerely.
[This statement was submitted by Paul M. Coates, Ph.D., 2021-2022
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, including malignant disorders such
as leukemia, lymphoma, and myeloma, as well as non-malignant conditions
such as sickle cell disease (SCD), thalassemia, bone marrow failure,
venous thromboembolism, and hemophilia.
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. 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.
The field of hematology continues to make great strides in
conquering blood diseases thanks to novel technologies, mechanistic
insights, and cutting-edge therapeutic strategies. Groundbreaking
scientific research highlighted at the December 2021 ASH Annual Meeting
and Exposition, much of which was either funded by NIH or derived from
NIH-funded research, presented information on advances in gene therapy,
practice-changing discoveries in immunotherapies, and advances in
patient care for a wide range of hematologic diseases and conditions.
Moreover, the Society's regularly updated ASH Agenda for Hematology
Research serves as a roadmap to prioritize research within the
hematology field and includes recommendations for areas of additional
Federal investment that will equip researchers to make truly practice-
changing discoveries in hematology and other fields of medicine for
years to come.
Additionally, extraordinary research that has occurred over the
past 2 years to identify and develop COVID-19 vaccines, antivirals, and
other medical countermeasures is all built on the scientific foundation
enabled by the Federal investment in NIH. In response to the emergence
of significant hematologic complications from COVID-19 infection, ASH
developed the ASH COVID-19 Research Agenda in Hematology, which
highlights fundamental questions that experts in hematology and blood
research deem of critical importance to researchers, physicians, and
patients. The questions outlined in the document identify significant
questions about the biology, pathophysiology, and underlying clinical
implications of COVID-19 as they relate to hematology science and
clinical care and are meant to inspire research that leads to enhanced
understanding of the disease process, decreased hematologic
complications in COVID-19, and improved care of patients with
hematologic disease. The original document outlined hematology-related
basic science and clinical research questions that emerged in the first
few months of the pandemic; the research agenda continues to be updated
as our understanding of the natural history and treatment of COVID-19
improves.
ASH thanks Congress for the robust bipartisan support that has
resulted in seven consecutive years of welcome and much needed funding
increases for NIH. For fiscal year (FY) 2023, ASH joins nearly 400
organizations and institutions across the NIH stakeholder community to
strongly support the Ad Hoc Group for Medical Research recommendation
that NIH receive a program level of at least $49.048 billion. 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. ASH also joins the community in strongly
urging lawmakers to ensure that any funding for the new Advanced
Research Projects Agency for Health (ARPA-H) supplement the $49 billion
recommendation for NIH's base budget, rather than supplant the
essential foundational investment in the NIH. In addition, ASH supports
the Administration's proposal to supplement NIH's budget with
additional mandatory funding to speed the pace of pandemic response and
readiness.
centers for disease control and prevention (cdc)
The Society also recognizes the important role of the 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.
The Sickle Cell Disease and Other Heritable Blood Disorders
Research, Surveillance, Prevention, and Treatment Act of 2018 (Public
Law 115-327) authorized CDC, through its Sickle Cell Data Collection
program, to award 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. Currently 11 States participate in the data collection
program, with data being collected from multiple sources (e.g., newborn
screening programs and Medicaid) in order to create individual health
care utilizations profiles. Funding through the CDC Foundation has
allowed Georgia and California to collect data since 2015; additional
CDC Foundation funding, along with discretionary funding from CDC and
the Department of Health and Human Services (HHS) and $2 million in
funding provided by Congress in fiscal Year2021 has allowed nine
additional States (Alabama, Colorado, Indiana, Michigan, Minnesota,
North Carolina, Tennessee, Virginia, and Wisconsin) to begin their data
collection programs. These 11 States are estimated to include just over
35 percent of the U.S. SCD population.
ASH thanks Congress for the $3 million provided for the data
collection program in fiscal Year2022. This funding will allow CDC to
continue to support data collection efforts in all of the States
currently participating in the program. ASH also appreciates the
Administration's request for $4.5 million in funding for the program in
fiscal Year2023. However, the Society strongly supports providing CDC
with at least $10 million in FY 2023 for the Sickle Cell Data
Collection program. This additional funding is necessary to allow the
program to continue in the States currently participating in the
programs and to also expand the programs to include additional States
with the goal of covering the majority of the U.S. SCD population over
the next 5 years.
To further support CDC's sickle cell data collection efforts, ASH
urges the inclusion of the following report language under CDC's
National Center on Birth Defects and Developmental Disabilities
(NCBDDD):
--Public Health Approach to Blood Disorders/Sickle Cell Disease
The Committee includes $10,000,000 for the Sickle Cell Data
Collection program to allow for data collection and analysis in States
currently participating in the program and to allow for expansion to
additional States. The Committee encourages CDC to provide technical
assistance to additional States with a higher prevalence of SCD, so
that they can successfully participate in this grant program to better
identify affected individuals in their States and better meet their
needs.
Additionally, ASH supports the public health community's request
for at least $11 billion in overall funding for the CDC in FY 2023.
Strong funding for CDC is critical to supporting all of CDC's
activities and programs, which are essential to protect the health of
our communities. In addition to ensuring a strong public health
infrastructure and protecting our communities from public health
threats and emergencies, CDC programs are crucial to reducing health
care costs and improving health. However, due to years of underfunding,
many CDC programs have not received the resources that are needed to
address the many health challenges we face as a nation. A funding level
of at least $11 billion would build upon the funding increase Congress
provided CDC in FY 2022 and strengthen all of CDC's programs.
health resources and services administration (hrsa)
ASH supports funding for the SCD programs within HRSA's Maternal
and Child Health Bureau, including $9.205 million for the SCD Treatment
Demonstration Program (SCDTDP) and at least $6 million for the SCD
Newborn Screening Program, which is part of HRSA's Special Projects of
Regional and National Significance (SPRANS) program. The grantees
funded by these programs work to improve access to quality care for
individuals living with SCD and sickle cell trait. The SCDTDP funds
five geographically distributed regional SCD grants that support SCD
providers to increase access to high quality, coordinated,
comprehensive care for people with SCD, while the SCD Newborn Screening
Program provides grants to support the comprehensive care for newborns
diagnosed with SCD. ASH also supports the inclusion of language in the
report accompanying the FY 2023 appropriations bill recognizing the
importance of the Sickle Cell Disease Treatment Demonstration Program
in supporting the growth of comprehensive sickle cell disease centers:
--Sickle Cell Disease Treatment Demonstration Program
The Committee includes $9,205,000 for this program, a $2,000,000
increase above the FY 2022 enacted level. The Committee recognizes the
importance of the program in supporting the comprehensive sickle cell
disease (SCD) centers in the provision of coordinated, comprehensive,
culturally competent, and family-centered care to people with SCD. The
Committee affirms the goals of the program to improve care delivery and
access to high quality care for people with SCD, with a focus on
increasing access to SCD specialists; increase the number of providers
with SCD expertise and knowledge of SCD treatment methods; and enable
access to the latest treatment options following evidence-based
guidelines
Finally, ASH joins many others in the physician community in
supporting funding for HRSA's Preventing Burnout in the Health
Workforce program. Health care professionals have long experienced high
levels of stress and burnout, and our members have shared that COVID-19
has only exacerbated the problem. Burnout has been shown to reduce job
performance, increase turnover, and, in its most extreme instances,
lead to mental health issues. This important program, established by
the American Rescue Plan Act and modeled after provisions in the Dr.
Lorna Breen Health Care Provider Protection Act, provides grants to
health care organizations to support evidenced-based and evidence-
informed programs, practices, and trainings with the goal of reducing
burnout and promoting mental health and wellness among the health care
workforce. As the U.S. continues to deal with the COVID-19 crisis, ASH
respectfully urges Congress to provide robust funding for the
Preventing Burnout in the Health Workforce program in order to expand
access to vital programs to address the growing mental health
challenges facing our health care workforce.
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 FY 2023 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 $2.03 billion increase
provided for Fiscal Year (FY) 2022 reinforces our Nation's commitment
to the health and well-being of all Americans at a time when investing
in biomedical research and scientific innovation is more important than
ever.
ASHG urges the subcommittee to appropriate $49 billion for NIH's
base budget in FY 2023, with any additional funding for the newly
established Advanced Research Projects Agency for Health (ARPA-H) to
supplement, not supplant, the core investments in the NIH base budget.
extraordinary progress in human genetics & genomics research
Federal funding for human genetics and genomics research is
enabling new insights into the structure of, and variation in, the
human genome, and leading to new discoveries in preventing, diagnosing,
and treating disease.\1\ Through the development of powerful DNA
sequencing and computational tools, in the past year, an NIH-supported
consortium generated the first complete assembly of a human genome,
greatly expand our understanding of genomic variation and providing an
essential tool for exploring the genetic underpinnings of disease.\2\
Researchers are also developing new 'polygenic score' tools to assess
one's risk for many of the leading causes of death in the United
States, including cardiovascular diseases, immune disorders, and
cancers.\3\ Such tools hold promise for enabling a personalized
approach to preempting and preventing disease.
---------------------------------------------------------------------------
\1\ American Society of Human Genetics. (2021). Success Stories in
Human Genetics and Genomics Research (Chronic Diseases) [Fact sheet].
https://www.ashg.org/wp-content/uploads/2022/01/The-Benifits-of-human-
genetics-Noncommunicable-Diseases-factsheets-v3.pdf.
\2\ Nurk, S. et al. The Complete Sequence of a Human Genome.
Science 376(6588): 44-53 (2022). https://doi.org/10.1126/
science.abj6987.
\3\ https://www.cdc.gov/nchs/fastats/leading-causes-of-death.htm.
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Genetic science is delivering major advances in the detection and
treatment of chronic diseases, notably cancer. Through 'liquid biopsy'
blood tests, clinicians can identify genetic changes in cancerous
tumors in a non-invasive way to guide targeted treatments; this testing
method is being further developed for the early screening and detection
of multiple cancers. Because of federally funded research findings, we
now have novel cancer treatment options such as CAR-T gene therapies.
As of this year, the FDA currently lists 23 approved cellular and gene
therapy products to treat cancers and other diseases.\4\
---------------------------------------------------------------------------
\4\ https://www.fda.gov/vaccines-blood-biologics/cellular-gene-
therapy-products/approved-cellular-and-gene-therapy-products.
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Human genetic and genomic research is also delivering hope for the
millions of people in the United States living with rare diseases. For
example, results from NIH-funded trials investigating gene therapies
and gene editing technologies indicate that genetic approaches will
allow patients afflicted with sickle cell disease to live pain-free and
no longer in need of frequent blood transfusions. Effective gene
therapy is now available for spinal muscular atrophy, a rare childhood
disease characterized by progressive muscle weakness, and is being
tested to treat other devastating diseases like Huntington's disease
and familial amyotrophic lateral sclerosis (Lou Gehrig's disease).
genetics & genomics: striving for equity and research cohort diversity
Genetic science can advance health equity through the deliberate,
meaningful inclusion and participation of individuals from diverse
groups in human genetics and genomics research. The inclusion of
populations representing diverse ancestries helps us gain a fuller
understanding of the genetics of health and disease, knowledge which
can be used to develop more accurate diagnostic tests and more
effective treatments that benefit all Americans.\5\ Diverse
participation in research is essential if we are to realize the full
promise of human genetics and genomics research and the equitable
application of genetic discoveries in healthcare and society.
---------------------------------------------------------------------------
\5\ Collins, F., Doudna, J.A., Lander, E., and Rotimi, C.N. Human
Molecular Genetics and Genomics--Important Advances and Exciting
Possibilities. N.Engl.J.Med 384: 1-4 (2021).
---------------------------------------------------------------------------
Genetics research studies illustrate the importance of research
cohorts reflecting humanity's diversity.\6\ For example, because most
individuals participating in genetics research are of European
ancestry, polygenic risk score tests are more effective for assessing
disease risk in people of European ancestry than for individuals with
Hispanic, South Asian, East Asian or African ancestries.\7\ The Society
commends NIH's efforts to advance diverse participation in research,
particularly the All of Us Research Program.\8\ Significantly, in 2022,
this program released a database of health information and whole-genome
sequences from almost 100,000 individuals,\9\ half of whom are from
historically underrepresented racial or ethnic backgrounds.\10\
---------------------------------------------------------------------------
\6\ Wojcik G., et al. Genetic Analysis of diverse populations
improves discovery for complex traits. Nature 570(7762): 514-518
(2019). https://doi: 10.1038/s41586-019-1310-4.
\7\ Ibid.
\8\ https://allofus.nih.gov/.
\9\ https://www.researchallofus.org/.
\10\ https://www.nih.gov/news-events/news-releases/nih-s-all-us-
research-program-releases-first-genomic-dataset-nearly-100000-whole-
genome-sequences.
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return on investment: genetics research benefits the economy
As the United States moves towards recovery from the COVID-19
pandemic, economic activity across all sectors remains key for our
return to normalcy. In addition to its importance for addressing health
care needs in the United States, Federal investments in research and
development have been shown to drive economic activity. A 2021 study
commissioned by ASHG and conducted by TEConomy Partners highlights the
growth of a dynamic ecosystem derived from human genetics and genomics
research, and that the development and manufacturing of genomic
technologies, diagnostics and therapeutics, and the associated
healthcare services, ``generate substantial U.S. economic activity and
support a large volume of jobs across the Nation.'' \11\ The report
estimates that the human genetics and genomics sector supports 850,000
jobs and generates $265 billion in total economic activity
annually,\12\ demonstrating that this sector has grown around five-fold
in the last decade.
---------------------------------------------------------------------------
\11\ Tripp, S., and Grueber, M. 2021. The Economic Impact and
Functional Applications of Human Genetics and Genomics.
\12\ Ibid.
---------------------------------------------------------------------------
broad data sharing: essential for human genetics and genomics research
Broad sharing of human genome data from NIH-funded research is
essential for advancing science and maximizing the public's return on
investment in biomedical research. Since the human genome houses
sensitive information, the genetics and genomics research community is
a leader in developing best practices for sharing data while protecting
individuals' privacy. We strongly support policies including the Common
Rule, the Genetic Information Nondiscrimination Act (GINA), the 21st
Century Cures Act, the NIH Genomic Data Sharing Policy, and HIPAA,
which together act to protect individuals from the inappropriate
disclosure of data for non-research purposes.\13\ As Congress
encourages NIH to explore the National security risks associated with
the sharing of individuals' health information, we urge the Committee
to recognize the privacy protections already established by Congress
and NIH for genetic research data, and to ensure that broad data-
sharing can continue to fuel scientific progress.
---------------------------------------------------------------------------
\13\ American Society for Human Genetics. (2021). Perspectives:
Research and Privacy [Fact sheet]. https://www.ashg.org/wp-content/
uploads/2021/08/Factsheet-DataPrivacy.pdf.
---------------------------------------------------------------------------
summary
ASHG joins the Ad Hoc Group for Medical Research in recommending at
least a $49 billion base budget for NIH for FY 2023. This funding level
would allow NIH's base budget to keep pace with inflation, specifically
the biomedical research and development price index, and support
crucial research on human genetics and genomics across all of the NIH's
27 Institutes and Centers. ASHG also recognizes the important and
catalytic role of ARPA-H for advancing science and biomedicine,
building on the foundation of basic research supported by NIH. Funding
to establish ARPA-H should complement NIH's current investments in
basic research.
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, clinicians, genetic counselors, nurses, and others who
have a special interest in the field of human genetics.
[This statement was submitted by Brendan Lee, MD, PhD, President-
Elect,
American Society of Human Genetics.]
______
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, $25 million be included for KidneyX, a
public-private partnership to accelerate innovation in the prevention,
diagnosis, and treatment of kidney diseases, in the Fiscal Year (FY)
2023 Labor, Health and Human Services, Education and Related Agencies
Appropriations bill.
More than 37 million people in the United States are living with
kidney diseases, and nearly 800,000 have kidney failure, for which
there is no cure. This under-recognized epidemic disproportionately
affects communities of color. For instance, Black Americans comprise 13
percent of the U.S. population but represent 33 percent of Americans
receiving dialysis, the most common therapy for kidney failure.
Dialysis, while an important tool to manage kidney failure, has
outcomes worse than most cancers: 50 percent of people starting
dialysis today will die within 5 years.
The COVID-19 pandemic is especially deadly for kidney patients.
Americans with kidney diseases are the most at risk among Medicare
beneficiaries for severe outcomes from COVID-19--including
hospitalization and death--and COVID-19 damages the kidneys of 30
percent of all hospitalized COVID-19 patients, even those without a
prior history of kidney diseases.
The status quo for treating and managing kidney diseases is far too
costly to taxpayers to continue without intervention. Before the COVID-
19 pandemic, Medicare dedicated $125 billion, or 25 percent of all
traditional Medicare fee-for-service spending, to the care of all
kidney diseases, including $37 billion, or 7 percent of Medicare fee-
for-service spending, to manage kidney failure alone. Relative to other
chronic diseases with comparable Federal spending and disease burden,
people with kidney diseases have had a lack of innovation in the
prevention, diagnosis, and treatment of kidney diseases, but hope is on
the horizon: KidneyX is attracting a new generation of innovators and
investors and transforming kidney care.
KidneyX is incentivizing innovators to fill unmet patient needs
through a series of prize competitions, de-risking the
commercialization process by fostering coordination among Federal
agencies and creating a sense of urgency on behalf of patients and
families. To date, KidneyX has provided funding to 67 innovators across
5 prize competitions for solutions ranging from patient-generated
solutions that improve quality of life while living with kidney
diseases to steps toward paradigm-shifting technologies such as a
wearable or implantable artificial kidney and xenotransplantation.
Further, KidneyX is delivering on its pledge to catalyze private
markets to invest in the advancement of kidney care. For instance,
investors contributed more than $300,000,000 to multiple winners of
KidneyX's first prize competition, Redesign Dialysis.
FY 23 funding will support Phase 2 of the Artificial Kidney Prize,
which seeks to promote the integration and advancement of prototype
bioartificial kidneys. With $25,000,000 in funding, KidneyX can support
additional innovators in the Artificial Kidney Prize competitions and
run prizes in other priority areas, such as refining the diagnosis of
kidney diseases-currently more than 90 percent of people with kidney
diseases are unaware they have the condition-and developing tools to
prevent kidney diseases altogether. Recent advances in regenerative
medicine and xenotransplantation have demonstrated the promise
innovation can bring to kidney health.
Winning innovations awarded KidneyX prizes have supported
innovators in 22 States, including those highlighted below:
--Applying advances in science and technology to improve current
kidney failure therapies, such as nanomaterials to reduce
infections in dialysis grafts and an innovative catheter which
might exponentially reduce infections in the provision of
dialysis, both seeded through the Redesign Dialysis Phase 1 and
Redesign Dialysis Phase 2 prize competitions
--Patient generated solutions to better manage their care, such as
clothing which provides health care staff easy access to
dialysis ports without having to remove or scrunch up clothing,
seeded through the Patient Innovator Challenge
--Novel methods for providing kidney health care during the pandemic
such as a ``Good Humoral Immunity Truck'' to deliver vaccines
to patients in hard-to-reach communities, and a new reusable N-
95 respirator to aid in the high-touch care setting of a
dialysis unit, seeded through the COVID-19 Kidney Care
Challenge
--Groundbreaking technologies that may lead to a fully implantable or
bioartificial kidney, such as an implantable silicon filter
cartridge paired with a bioreactor with kidney cells that
together provide continuous treatment without needing to be
tethered to a dialysis machine, or a method to genetically
engineer pig kidneys to make them perform life-sustaining
functions when transplanted in humans, both seeded through the
Artificial Kidney Prize competition
A bipartisan achievement, KidneyX was first unveiled as a concept
at the 2016 Obama White House Organ Summit and was a central pillar of
Former President Donald J. Trump's July 2019 Executive Order on
Advancing American Kidney Health. KidneyX is a true public-private
partnership: the private sector has already committed $25 million to
KidneyX and is committed to matching Federal funding to achieve a
program total of $250 million. KidneyX has received $15 million since
fiscal Year20 in enacted appropriations. Since its inception, KidneyX
has demonstrated the success of its public-private prize funding model,
delivering on its mission of accelerating innovation in kidney care,
attracting new innovators and investors to the kidney space, and
broadening the availability of novel ideas and capital to improve the
lives of the 37 million Americans with kidney disease.
In light of this strong track record, we respectfully request that
the Labor-HHS subcommittee continue its commitment by appropriating $25
million in FY 2023 for KidneyX, catalyzing private sector investment in
kidney health including to develop the world's first artificial kidney.
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 people in the
United States are living with kidney diseases, and for nearly 800,000
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 $37 billion) in CY 2019,
yet therapeutics for kidney failure remain limited and 50 percent of
patients starting dialysis, the most common therapy for kidney failure,
will die within 5 years.
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 FY 2023 and that those funds be made available to support
KidneyX. These funds will accelerate the development and adoption of
the artificial kidney and other novel therapies and technologies that
improve the diagnosis and treatment of people with kidney diseases.
Thank you for your consideration of this important request. Should
you have questions or need additional information, do not hesitate to
contact Zach Kribs, Senior Government Affairs Specialist at the
American Society of Nephrology, at [email protected].
about the american society of nephrology
Since 1966, ASN has been leading the fight to prevent, treat, and
cure kidney diseases throughout the world by educating health
professionals and scientists, advancing research and innovation,
communicating new knowledge, and advocating for the highest quality
care for patients. ASN has more than 20,000 members representing 132
countries. For more information, visit www.asn-online.org and follow us
on Facebook, Twitter, LinkedIn, and Instagram.
[This statement was submitted by Zach Kribs, Senior Government
Affairs
Specialist, American Society of Nephrology.]
______
Prepared Statement of the American Society of Plant Biologists
On behalf of the American Society of Plant Biologists (ASPB), we
would like to thank the subcommittee for its support for the National
Institutes of Health (NIH). ASPB and its members strongly believe that
sustained investments in scientific research are a critical component
of economic growth, job creation, and innovation for our Nation. ASPB
supports continued robust funding for NIH in fiscal year (FY) 2023 and
asks that the subcommittee encourage increased support for plant-
related research with relevance to health within the agency, including
within the newly established Advanced Research Projects Agency for
Health (ARPA-H).
ASPB, founded in 1924 as the American Society of Plant
Physiologists, was established to promote the growth and development of
plant biology, to encourage and publish research in plant biology, and
to promote the interests and professional advancement of plant
scientists in general. ASPB members educate, mentor, advise, and
nurture future generations of plant biologists; they work to enhance
understanding of plant biology and its impacts on public health and
wellbeing, as well as science in general, in K-16 schools and among the
general public; they advocate in support of plant biology research;
work to convey the relevance and importance of plant biology; and they
provide expertise in policy decisions world-wide. Overall, ASPB
members, as representatives of the society, work to disseminate
information and to excite future generations about plant sciences,
especially through ASPB's advocacy, outreach activities, conferences,
and publications.
plant biology research and america's future
Among many other functions, plants are the building blocks at the
base of the food chain upon which all life depends. Importantly, plant
research is also helping make many fundamental contributions to the
study of human health, including that of a sustainable supply and
discovery of plant-derived pharmaceuticals, nutraceuticals, and
alternative medicines. One example is the antimalarial compound
artemisinin, purified from sweet wormwood plants, whose biosynthetic
pathway was defined and transplanted into yeast to create a low-cost
source of this pharmaceutical for the developing world. Nearly 120 pure
compounds extracted from plants are used globally in medicine, hinting
at the significant possibilities for future discoveries applicable to
human health, agriculture, and manufacturing.\1\ Plants can be
harnessed as biofactories to produce vaccines against infectious
diseases such as Ebola, hepatitis B, cholera, and coronavirus. Indeed,
in February 2022, a plant-derived vaccine developed by GlaxoSmithKline
and Medicago, trademarked as Covifenz, was approved by regulatory
authorities in Canada for the prevention of COVID-19.\2\ Clinical
trials showed that Covifenz was between 69-78 percent effective in
preventing COVID-19 infection, demonstrating that this vaccine could be
a valuable asset in ending the ongoing COVID-19 pandemic.\3\ Plant
research also contributes to the continued, sustainable, development of
better and more nutritious foods and the understanding of basic
biological principles that underpin improvements in public health and
human nutrition.
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\1\ Page 19, Decadal Vision, https://
plantsummit.files.wordpress.com/2013/07/plantscience
decadalvision10-18-13.pdf.
\2\ https://medicago.com/en/press-release/covifenz/.
\3\ https://www.nejm.org/doi/full/10.1056/NEJMoa2201300.
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plant biology and the national institutes of health
Plant science and many of our ASPB member research activities have
enormous positive impacts on the NIH mission to pursue ``fundamental
knowledge about the nature and behavior of living systems and the
application of that knowledge to extend healthy life and reduce the
burdens of illness and disability.'' In general, plant research aims to
improve the overall human condition-be it food, nutrition, medicine,
clean air, or agriculture-and the benefits of plant science research
readily extend across disciplines. In fact, plants are often the ideal
model systems to advance our ``fundamental knowledge about the nature
and behavior of living systems'' because they are, like humans, complex
multi-cellular organisms yet afford ease of genetic manipulation, a
lesser regulatory burden, and maintenance requirements that are less
expensive and burdensome than those required for the use of animal
systems.
Fundamental Biological Research.--Many fundamental biological
components and mechanisms are shared by plants and animals. Examples
include but are not limited to genetic principles, cell division, host-
pathogen interactions, organism-environment interactions, polar growth,
DNA methylation and repair, innate immune signaling, and circadian
(biological) rhythms. Fundamental hereditary laws were derived from the
study of garden peas. The phenomenon of RNA interference, which has
application in gene therapies for human disease, was first discovered
in plants. Contributions of plant genetics to advancing human health
were exemplified when Barbara McClintock, an American scientist and
cytogeneticist, was awarded the Nobel Prize in Physiology for the
discovery of ``jumping genes'' or transposable elements in maize, which
function as mobile DNA sequences within a genome. Similar elements
constitute 40 percent or more of the human genome. More recently,
plants are among organisms that have been used to develop revolutionary
technologies such as gene editing (such as the CRISPR-Cas9 system),
capable of precisely editing genomes to potentially correct mutations
that lead to disease. These technologies are being deployed to produce
more nutritious food and to sustainably increase production.
Furthermore, many treatments and therapies are based on metabolites
derived from plants, which exemplifies the application of plant biology
research to improving human health. These important discoveries, among
many others in science and technology, reflect the fact that some of
the most important biological discoveries applicable to human
physiology and medicine can find their origins in plant-related
research endeavors.
Use-Inspired Research.--In addition to their role in expanding our
understanding of the basic mechanisms of biology, plants have been
enormously beneficial in advancing use-inspired research aimed at
developing breakthrough technologies, platforms, and solutions for
health and medicine. The newly established Advanced Research Projects
Agency for Health (ARPA-H) within NIH is a promising avenue for
bringing new plant-based breakthroughs from idea to reality. The ARPA
model for funding research has already proved to be an excellent fit
for plant biology as shown by successful programs funded through the
Defense Advanced Research Projects Agency (DARPA) and the Advanced
Research Projects Agency--Energy (ARPA-E). As ARPA-H develops, ASPB
supports the inclusion of plant-related research within the agency's
portfolio.
Health and Nutrition.--Plant biology research is also central to
the application of basic knowledge to ``extend healthy life and reduce
the burdens of illness and disability.'' Without good nutrition, there
cannot be good health. Indeed, a World Health Organization study on
childhood nutrition in developing countries concluded that over 50
percent of child deaths under the age of five could be attributed to
malnutrition's effects on weakening the immune system and exacerbating
common illnesses such as respiratory infections and diarrhea; \4\ this
is expected to worsen as global populations increase. One example of
how advances in plant biology have been applied to tackling nutritional
deficiencies is golden rice, designed to address vitamin A deficiency
and reduce blindness risk in vulnerable children. Golden rice was
engineered to include additional genes that switch on production of
beta-carotene, and a bowl of this golden rice can provide 60 percent of
a child's daily requirement of vitamin A to prevent blindness.
Significant advances have also been made in the production of value-
added and resilient crops capable of withstanding drought, natural
disasters, and extreme temperature shifts. DroughtGard Hybrid corn,
engineered to maximize water storage, usage, and crop yield in
unfavorable drought conditions, is just one example of the progress
being made towards health, nutrient, and food security through
innovations made in plant science.
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\4\ https://www.who.int/bulletin/archives/78(10)1207.pdf.
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Obesity, cardiac disease, and cancer also take striking tolls
globally. Research to improve and optimize concentrations of plant
compounds known to have, for example, anti-cancer properties, will help
in reducing disease incidence rates. Ongoing development of crop
varieties with value-added nutraceutical content is an important
contribution that plant biologists are making toward realizing a common
goal of personalized, preventative medicine.
Drug Discovery.--Plants are fundamentally important as sources of
both extant drugs and drug discovery leads. In fact, 60 percent of
anti-cancer drugs in use within the last decade are of natural product
origin-plants being a significant source. An excellent example is the
anti-cancer drug Taxol, which was discovered as an anti-carcinogenic
compound from the bark of the Pacific yew tree through collaborative
work involving scientists at the NIH National Cancer Institute and
plant natural product chemists. While the pharmaceutical industry has
invested some efforts on natural products-based drug discovery,
research support from NIH remains a crucial component of the drug
development pipeline. Multidisciplinary teams of plant biologists,
bioinformaticians, and synthetic biologists are being assembled to
develop new tools and methods for natural products discovery and
creation of new small-molecule pharmaceuticals. We appreciate NIH's
current investment into understanding the biosynthesis of natural
products through transcriptomics and metabolomics of medicinal plants
and support more funding opportunities that, similar to the ``Genomes
to Natural Products'' initiative, will enhance new plant-related
medicinal research.
Plant biology is also contributing to the advancement of new agents
for cancer immunotherapy, a newer treatment strategy that uses the
body's own immune system to fight disease. Research funded by NIH has
shown that nanoparticles containing cowpea mosaic virus--which infects
legumes but is harmless to humans--can be injected into tumors to bait
the immune system into attacking and destroying cancerous cells.
Ongoing support from NIH is enabling researchers to determine the
mechanisms behind the efficacy of these nanoparticles in attacking
tumors, research that will, in turn, pave the way for these and similar
plant-derived treatments to enter clinical trials.\5\
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\5\ https://pubs.acs.org/doi/10.1021/acs.molpharmaceut.2c00058.
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conclusion
Plants play unique and pivotal roles in nutrition and health,
agriculture, and the food supply, as well as basic science discoveries
directly or indirectly relevant to public health. Plant biology
research integrates seamlessly and synergistically with many different
disciplines and core missions at NIH. As such, ASPB asks the
subcommittee to provide continued robust funding for all components of
the NIH and direct the agency to support additional plant research to
continue to pioneer new discoveries and new methods with applicability
and relevance in biomedical research. Thank you for your consideration
of ASPB's testimony. For more information about ASPB, please see
www.aspb.org.
[This statement was submitted by Crispin Taylor, Ph.D., Chief
Executive Officer, American Society of Plant Biologists.]
______
Prepared Statement of the American Speech-Language-Hearing Association
Chair Murray and Ranking Member Blunt: The American Speech-
Language-Hearing Association (ASHA) thanks you for the opportunity to
submit testimony on the Fiscal Year (FY) 2023 Labor, Health and Human
Services, Education and Related Agencies appropriations bill. My name
is Judy Rich, EdD, CCC-SLP, BCS-CL, ASHA's President for 2022.
As the subcommittee begins its work on this critical legislation, I
offer ASHA's support for the following programmatic funding requests
for the U.S. Department of Education (ED):
1. $16.76 billion for the Individuals with Disabilities Education
Act (IDEA) Part B State Grants, $503 million for IDEA Part B
Section 619 Preschool Grants, $932 million for IDEA Part C
Infants and Toddlers with Disabilities, and $250 million for
IDEA Part D section 662 personnel preparation grants within ED.
2. $1 billion for the Administration's proposed School-Based
Health Professionals program to support efforts to address
shortages of school-based health professionals. ASHA also urges
the subcommittee to ensure that speech-language pathologists
(SLPs) and audiologists are eligible for this program.
In addition, ASHA encourages the subcommittee to include report
language to establish issue-specific technical assistance (TA) centers
within ED to improve the ability of school-based SLPs and educational
audiologists to meet the needs of students with communication
disorders. Specifically, ASHA urges the subcommittee to create TA
centers focused on Communications/Speech Disorders; Medicaid Services
and Reimbursement; Workload Mitigation; and Telepractice Services.
individuals with disabilities education act
ASHA thanks members of the subcommittee for increasing funding for
the Individuals with Disabilities Education Act (IDEA) last year.
Children and youth (ages 3-21) receive special education services
and related services under IDEA Part B, and infants and toddlers
(birth-2 years old) with disabilities and their families receive early
intervention services under IDEA Part C. Congress must continue to make
appropriate investments in IDEA to ensure children with disabilities
receive the free appropriate public education (FAPE), which they are
entitled to under law.
A substantial increase in funding for IDEA is a step toward
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\ ASHA appreciates that the American Rescue Plan Act
provided $2.58 billion for IDEA Part B State Grants, $200 million for
IDEA Preschool Grants, and $250 million for Part C Infants and
Toddlers, and that the Consolidated Appropriations Act, 2022 (Public
Law 117-103) increased IDEA funding above FY 2021 levels for the
remainder of the current fiscal year. However, additional funding is
necessary to build on this progress.
---------------------------------------------------------------------------
\1\ U.S. Department of Education. (n.d.). About IDEA. https://
sites.ed.gov/idea/about-idea/.
---------------------------------------------------------------------------
These additional resources are essential to support States and
local education agencies in providing FAPE to all students with
disabilities. Schools and districts continue to grapple with costs
associated with the Coronavirus Disease 2019 (COVID-19) pandemic and
require additional resources to address challenges associated with
ensuring continued education and delivering necessary services and
supports for children with disabilities. ASHA supports the
Administration's FY 2023 budget request for IDEA at the levels
identified above to ensure students with disabilities can continue to
access the services that they are legally entitled to.
technical assistance centers
Speech-language pathology services are highly utilized by students
served under IDEA. According to ED's 43rd Annual Report to Congress on
the Implementation of IDEA, 2021, speech or language impairments
represent the most prevalent disability category of services provided
under IDEA Part B: 39.9 percent of children ages 3 through 5, and 16.3
percent of students ages 6 through 21.\2\
---------------------------------------------------------------------------
\2\ U.S. Department of Education, Office of Special Education and
Rehabilitative Services, Office of Special Education Programs. (2021).
43rd Annual Report to Congress on the Implementation of the Individuals
with Disabilities Education Act, 2021. https://sites.ed.gov/idea/files/
43rd-arc-for-idea.pdf.
---------------------------------------------------------------------------
ASHA's 2020 Schools Survey found that school-based SLPs' top two
challenges identified were excessive paperwork (81.7 percent) and high
workload/caseload (56.5 percent), while educational audiologists rated
those as their second (53 percent) and fifth greatest challenges (41.7
percent).\3,4\ Both SLPs and audiologists also identified challenges in
Medicaid billing for eligible students.
---------------------------------------------------------------------------
\3\ American Speech-Language-Hearing Association. (2020). 2020
Schools survey. Survey summary report: Numbers and types of responses,
SLPs. www.asha.org.
\4\ American Speech-Language-Hearing Association. (2020). 2020
Schools survey. Survey summary report: Numbers and types of responses,
educational audiologists. www.asha.org.
---------------------------------------------------------------------------
Establishing TA centers focused on key issues impacting school-
based SLPs and educational audiologists would provide them valuable
support; thereby, helping to ensure a FAPE for students with challenges
that SLPs and audiologists can help address. The TA centers would:
1. provide resources, guidance, and best practices pertaining to
the assessment and treatment to habilitate the communication
disorder(s);
2. identify and develop free or low-cost evidence-based tools,
model programs, and best practices to address clinical and
professional practice issues; and
3. offer support and guidance for utilizing Federal funding
sources to support capacity to address staffing shortages of
speech-language providers within the school, community, or home
setting to ensure the delivery of effective services for all
students and their families.
The specific mission for each TA center would include:
1. Communications/Speech Disorders Center: Provide resources,
guidance, and best practices pertaining to the assessment and
treatment to habilitate the communication disorders for
clinicians and other members of the school community and
provide support and guidance regarding the utilization of
Federal funding sources to support capacity to ensure access to
such services for all students.
2. Medicaid Services and Reimbursement Center: Provide resources
to ensure that students who qualify for services under Medicaid
receive such services, and to streamline the reimbursement
process for providers, schools, and local and State education
agencies.
3. Workload Mitigation Center: Provide resources to mitigate the
workload burden for SLPs, audiologists, and other specialized
instructional support personnel to best serve students, and
support the State and local education agency's capacity
building of providers.
4. Telepractice Services Center: Provide resources to support
telepractice and the application of telecommunications
technology to the deliver audiology and speech-language
pathology professional services at a distance by linking
providers to students, and build capacity among State and local
education agencies to appropriately access services though a
range of venues.
The establishment of one or more of these centers would support
SLPs and audiologists in ensuring that all students have access to
FAPE; and ensure that State and local education agencies, school
administrators, and other educators have access to resources to support
students and providers. ASHA strongly encourages the subcommittee to
establish TA centers to support the ability of school-based SLPs and
educational audiologists to support students with disabilities,
particularly a Communications/Speech Disorders TA center to help
address the needs of the significant population of students receiving
speech-language services, and a Medicaid TA center to ensure that
schools, districts, and States are able to receive reimbursement for
services provided to Medicaid-eligible students.
conclusion
Thank you for the opportunity to provide this testimony for the
record. ASHA appreciates the subcommittee's past investments in IDEA
and other critical education programs and urges continued support at
the recommended funding levels. These investments are crucial to
ensuring SLPs and audiologists can meet the hearing, balance, speech,
language, swallowing, and cognition-related needs of students who are
receiving special education services in schools.
If you or your staff have any questions, please contact Eric
Masten, ASHA's director of Federal affairs for education, at
[email protected].
______
Prepared Statement of the American Thoracic Society
SUMMARY: FUNDING RECOMMENDATIONS
(in millions $)
------------------------------------------------------------------------
------------------------------------------------------------------------
National Institutes of Health.............................. $49,048
National Heart, Lung, and Blood Institute.............. $4,05
National Institute of Allergy and Infectious Diseases.. $6,806
National Cancer Institute.............................. $7,766
National Institute of Environmental Health Sciences.... $909
National Institute on Minority Health and Health $660
Disparities...........................................
National Institute of Nursing Research................. $199
Centers for Disease Control and Prevention................. $11,000
National Institute for Occupational Safety and Health.. $375
Asthma Programs........................................ $40
Division of Tuberculosis Elimination................... $225
Office on Smoking and Health........................... $310
Global Climate Change Program.......................... $110
Chronic Disease Awareness Education Program............ $6
National Center for Environmental Health............... $401.85
------------------------------------------------------------------------
american thoracic society
The American Thoracic Society (ATS) is the world's leading medical
society dedicated to accelerating the advancement of global respiratory
health through multidisciplinary collaboration, education, and
advocacy. Core activities of the Society's more than 16,000 members are
focused on leading scientific discoveries, advancing professional
development, impacting global health, and transforming patient care.
National Institutes of Health
The NIH is the world's leader in groundbreaking biomedical health
research into the prevention, treatment, and cure of diseases such as
lung cancer, chronic obstructive pulmonary disease (COPD), and asthma.
The coronavirus pandemic has revealed the critical national public
health security leadership role that the NIH holds in scientific
expertise to guide the Nation and in critical biomedical research to
develop new diagnostics, therapeutics, and prevention interventions,
including vaccines.
To continue to accelerate the development of life-saving cures and
treatments and innovative prevention interventions, it is essential for
Congress to continue to provide robust, predictable funding increases
across the full spectrum of NIH-supported research. We ask the
subcommittee to provide at least $49.048 billion in funding for the NIH
in FY 2023.
In addition, while the American Thoracic Society supports the
Advanced Research Projects Agency for Health (ARPA-H), we feel strongly
that funding for this new agency should complement--not supplant--NIH
funding.
National Heart, Lung, and Blood Institute
As the worldwide leader in research on heart, lung, blood, and
blood vessel diseases as well as sleep disorders, the NHLBI effectively
translates research results to the American public. To continue
important advances in research, the NHLBI is investing in prevention
programs and new treatments for cardiovascular disease including
congenital heart disease, developing novel therapies for lung diseases
such as COPD, asthma, cystic and pulmonary fibrosis, and driving
precision medicine that is tailored to individual patient needs through
data science.
National Institute of Allergy and Infectious Diseases
``Long COVID'' or Post-Acute Sequelae of SARS-CoV-2 Infection
(PASC) refers to the prolonged symptoms or new or returning symptoms
that people may develop after recovery from initial SARS-CoV-2
infection. NIAID is conducting and supporting research, such as natural
history studies, to understand what factors (e.g., age, sex, existing
co-morbidities, and host genetic factors) may impact the development of
post-acute symptoms, as well as the incidence and prevalence of long
COVID. A better understanding of long COVID is essential to identifying
and evaluating interventions to prevent and treat these long-term
symptoms. The ATS supports the NIAID's evaluation of promising
therapeutic and prevention strategies.
National Cancer Institute
In 2022, lung and bronchus cancer were estimated to represent 12.3
percent of all new cancer cases in the U.S. The ATS looks forward to
continuing collaboration with the NCI, the Federal Government's lead
agency for cancer research, on lung-cancer related research
initiatives, including lung cancer screening, lung nodule management,
lung cancer prevention, and the interaction between COPD and lung
cancer.
National Institute of Environmental Health Sciences
NIEHS-funded scientists are poised to make major fundamental
discoveries that will help us appreciate the impact of a warming
climate on public health. Furthermore, additional NIEHS-funded research
is necessary to design and tailor interventions that will reduce the
impact of climate change on the incidence and severity of disease, for
disadvantaged communities that may not have resources to mitigate the
effects of climate change.
National Institute on Minority Health and Health Disparities
With the Administration's commitment to addressing health
disparities, the ATS is committed to ongoing collaboration on the
implementation of evidence-based interventions to address health
disparities, including, for example, pulmonary rehabilitation, lung
cancer screening, access to curative procedures for early-stage lung
cancer and asthma home visiting programs.
National Institute of Nursing Research
The American Thoracic Society's Assembly on Nursing represents a
wide variety of clinical areas including treatment of pulmonary
disease, critical illness, and sleep disorders. The ATS will continue
its long history of collaboration with the NINR to support a research
focus on studies to understand and develop communication strategies and
technological advances to help vulnerable populations that experience
disparities of care in COVID related health outcomes.
NIH Sleep Research Plan
The NIH continues to lead global efforts to support research,
innovation, education, and scientific advances related to sleep
disorders and circadian biology through the National Center on Sleep
Disorders Research (NCSDR). Last year, NCSDR released a five-goal Sleep
Research Plan that aims to address sleep-related health disparities,
facilitate clinical sleep and circadian research, and advance the
scientific understanding and health impacts of sleep deficiency and
circadian misalignment. The plan identifies nine Critical Opportunities
(CO) related to the strategic goals, including working to develop tools
for the early prediction, detection, and treatment of sleep deficiency,
and identifying people-driven approaches to promote healthy sleep
behaviors.
As the NCSDR begins its work to implement the 2021 Sleep Research
Plan, Congress must ensure that NIH is provided with adequate resources
to achieve each of the five strategic goals and comprehensively explore
each Critical Opportunity.
centers for disease control and prevention
Strong funding for CDC is critical to support essential public
health programs that serve a wide range of U.S. communities. Due to
years of underfunding, many CDC programs have not received the
resources needed to address the myriad health challenges we face as a
nation, resulting in many of CDC's most effective prevention programs
not reaching all States.
National Institute for Occupational Safety and Health
NIOSH is a Federal leader in research on occupational health. NIOSH
also provides support of respiratory masks and other occupational
protective technologies, occupational health research training, and
provides technical assistance in cases of workplace exposure outbreaks.
Asthma Program
Currently, twenty-three States, Houston, Texas, and Puerto Rico
receive critical funding from the National Asthma Control Program to
support State and local efforts to reduce the burden of asthma. Our
request for $40 million in funding for the National Asthma Control
Program would enable CDC to continue to fund these programs to combat
the terrible human and economic burden caused by asthma. This increase
in funding would also allow CDC to expand the Asthma Call-Back Survey
to more States, thereby facilitating the collection of critical asthma
surveillance data necessary for effective policy planning and
implementation.
Division of Tuberculosis Elimination
The COVID response has diverted staff and funds from TB control
funding, resulting in missed opportunities to control TB in the U.S.
Additional funding is needed to restore local TB control programs and
to restore TB Trials Consortium (TBTC) trials sites that are conducting
vital TB clinical drug trials critical to halting the TB pandemic.
Office on Smoking and Health
Tobacco use is the leading cause of preventable disease,
disability, and death in the United States. In 2020, 12.5 percent of
U.S. adults (an estimated 30.8 million people) currently smoked
cigarettes: 14.1 percent of men, 11 percent of women. Every day, about
1,600 young people under age 18 smoke their first cigarette, and 235
begin smoking cigarettes daily. Over 16 million people live with at
least one disease caused by smoking, and fifty-eight million nonsmoking
Americans are exposed to secondhand smoke. The CDC is at the forefront
of the Nation's efforts to reduce deaths and prevent chronic diseases
that result from tobacco use.
Global Climate Change Program
Climate change continues to impact public health in a myriad of
ways, including, smoke from wildland fires, droughts, intense heat,
floods, and increased vector borne disease. Funding is needed to
provide local communities the necessary funding to develop strategies
for responding to health challenges posed by global climate change.
Chronic Disease Education Awareness Program
CDC continues to be challenged to respond appropriately to the
growth of chronic diseases in the U.S. CDC does not have an established
program for major chronic diseases such as COPD as well as less
prevalent chronic diseases. CDC has created a competitive grants
program to fund public education efforts on important chronic disease
that CDC has not yet addressed. Funding is needed to expand grant
opportunities to conditions like COPD and other chronic respiratory
diseases.
National Center for Environmental Health
According to the CDC, over 25 million people, including over 5
million children, live with asthma in the United States. Asthma
disproportionately impacts women and minority communities who bear the
brunt of the disease. Individuals living in poverty, as measured by the
Federal poverty line, are also more likely to suffer from asthma. In
addition, asthma imposes significant economic burdens, costing the
United States over $80 billion in medical and indirect costs in the
form of missed days of school and work. The ATS looks forward to
further collaborations with the NCEH in highlighting asthma as a
priority health condition with evidence-based interventions, which can
prevent the need for costly emergency department visits.
______
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
Fiscal Year 2023 report language recommendations on two conditions that
pose a significant personal burden for millions of women in this
country and a significant financial burden on the U.S. healthcare
system. AUGS is a national medical society whose mission is to promote
the highest quality of care in female pelvic medicine and
reconstructive surgery through excellence in education, research, and
advocacy.
1. Overactive Bladder
Overactive bladder is a sudden, intense urgency to urinate often
followed by an involuntary loss of urine. It causes people to
frequently go to the bathroom through the day and wake at night to
urinate due to altered nerve signaling between the bladder and the
brain. Overactive bladder occurs in the absence of a urinary tract
infection or other pathology.
Overactive bladder affects more than 38 million Americans, and 1 in
every 3 older adults. It is more common with aging and in women.
Overactive bladder has a significant impact on quality of life and on
the healthcare system. Adults with overactive bladder are more likely
to report anxiety and depression, falls, decreased quality of life, and
have 20 percent higher health care utilization than matched
counterparts without this condition. The Centers for Disease Control
and Prevention estimated that the direct and indirect costs of
overactive bladder in the U.S. was approximately $76 billion in 2015,
with a projected increase to $82.6 billion by 2020.
Anticholinergic medications are commonly prescribed to treat
overactive bladder. These therapies are the most studied, most
frequently used, and the most widely covered by insurance companies.
However, there is increasing clinical evidence suggesting an
association between long-term use of anticholinergic medications and
the risk of developing cognitive impairment and Alzheimer's Disease and
Related Dementia (ADRD). In fact, the evidence is compelling enough
that the American Urogynecologic Society's ``Choosing Wisely'' campaign
recommends the avoidance of anticholinergic medications to treat
overactive bladder in women older than 70.
It is well documented that the prevalence of overactive bladder
increases with age. Therefore, as the American population continues to
age over the next few decades, the personal and public health burden of
overactive bladder will become more acute. Despite compelling data
suggesting the negative impact of overactive bladder medications on
cognitive function, more robust evidence is needed to guide evidence-
based treatment approaches. Thus, current overactive bladder
medications must undergo additional study to definitively determine
their impact on cognition and ADRD development and to determine if the
risks substantially outweigh the benefits of these therapies. Such
studies would have a vast public health impact, given the millions of
people impacted by overactive bladder, the increasing number of people
developing dementia, and the substantial social and economic impact
that these conditions have on our country.
For these reasons, the American Urogynecologic Society urges the
subcommittee to adopt the following report language in the report
accompanying the Fiscal Year 2023 Labor-HHS-Education appropriations
bill that directs the National Institute of Diabetes, Digestive and
Kidney Diseases (NIDDK) and the National Institute on Aging (NIA) to
coordinate further study of anticholinergic medications and alternative
treatments to determine the safety and efficacy of these medication for
overactive bladder and their potential risks related to ADRD.
national institutes of health
National Institute on Diabetes, Digestive and Kidney Diseases/National
Institute on Aging
Overactive Bladder.--The Committee remains concerned about the
safety of medications used to treat overactive bladder, which may be
increasing risk of Alzheimer's Disease and Related Dementia (ADRD).
Overactive bladder affects 38 million Americans, and one in three older
adults in this country. Overactive bladder has a significant impact on
quality of life and the healthcare system. The anticholinergic
medications typically used first-line to treat overactive bladder have
been shown to increase the risk of developing dementia. Dementia
continues to grow as a prevalent and serious public health issue. The
Committee urges the National Institute on Diabetes, Digestive and
Kidney Diseases (NIDDK) and the National Institute on Aging (NIA) to
coordinate further study of anticholinergic medications and alternative
treatments to determine the safety and effectiveness of medications for
overactive bladder, and their potential risks related to ADRD. The
Committee requests an update on the status of research activities
focused on this issue in the fiscal year 2024 Congressional Budget
Justification.
2. Pelvic Floor Disorders
AUGS recommends report language to address pelvic floor disorders
in minority populations. Pelvic floor disorders, which include pelvic
organ prolapse and urinary and bowel incontinence, impact more than 25
million women annually in the United States. 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. The risk factors
and causes of pelvic floor damage leading to pelvic organ prolapse
include pregnancy and childbirth, aging and menopause, health
conditions that involve repeated straining (such as obesity, chronic
cough, and chronic constipation) and genetics.
Pelvic organ prolapse is a common problem, with 1 out of 8 women
undergoing surgery for prolapse at some point in their life. Studies
have shown a prevalence difference in racial and ethnic populations.
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. Non-surgical
treatments require frequent health care visits and surgical treatments
are imperfect with approximately 20 percent of women experiencing
recurrences within 10 years. Surgical repair of prolapse is the most
common inpatient procedure performed in women older than 70 years.
Urinary incontinence and accidental bowel leakage are two
additional pelvic floor disorders that impact over half of people aged
65 and older living at home. In fact, these conditions are leading
causes for admission to nursing homes as families are challenged for
caring for their loved ones. Patients who suffer from pelvic floor
disorders such as these experience a significant adverse impact on
quality of life, resulting in restrictions in activities, social
isolation, depression, and physical discomfort.
Studies have shown that women from underrepresented backgrounds are
much less likely to receive treatment for pelvic floor disorders. More
research is needed to identify trends in clinical care and the efficacy
associated with treatments for pelvic floor disorders. Furthermore, we
need to better understand the role that medical literacy and barriers
to care may play into the differences noted in outcomes amongst
underrepresented populations who suffer from pelvic floor disorders.
Families in this country with a loved one who suffers from a pelvic
floor disorder will benefit from research that decreases barriers to
effective identification and treatment of these impactful conditions.
For these reasons, the American Urogynecologic Society urges the
subcommittee to adopt the following report language in the report
accompanying the Fiscal Year 2023 Labor-HHS-Education appropriations
bill that directs the Eunice Kennedy Shriver National Institute on
Child Health and Human Development to prioritize research activities
that study pelvic floor disorders in minority populations.
Eunice Kennedy Shriver National Institute on Child Health and Human
Development
Pelvic Floor Disorders.--Pelvic floor disorders including urinary
incontinence, accidental bowel leakage and pelvic organ prolapse,
negatively impact the quality of life of more than 25 million US women
each year. There are socioeconomic disparities amongst women suffering
from pelvic floor disorders, with differences in symptoms, knowledge,
access to care, availability of treatments, and treatment outcomes
noted in patients from different backgrounds. Recent studies have shown
that minority women are much less likely to receive treatment for
pelvic floor disorders. A better understanding of disparities among
women with pelvic floor disorders can help guide the development of
initiatives for education, outreach, and treatment of women with pelvic
floor disorders. Therefore, the Committee urges the National Institute
on Child Health and Human Development (NICHD) to prioritize research
activities into underrepresented patient populations and pelvic floor
disorders. Such activities should include the development of
educational programs for general practitioners, the evaluation of
effectiveness of screening protocols for pelvic floor disorders in the
primary care setting, investigating medical literacy amongst minority
women as it pertains to pelvic floor disorders, as well as assessing
socio-economic and socio-cultural disease perspectives by designing
qualitative studies using focus groups of women with varying socio-
economic, cultural and ethnic backgrounds, evaluating current
educational resources, determining gaps in patient knowledge, and
designing culture-specific educational materials and resources. The
Committee requests an update on this issue and on research activities
to advance pelvic floor disorders prevention and treatment in the FY
2024 Congressional Budget Justification.
Thank you in advance for your favorable consideration of these
report language requests. Your support will positively impact
knowledge, access to care and treatment for overactive bladder and for
pelvic floor disorders and improve the lives of the millions of
American women affected by these devastating conditions.
______
Prepared Statement of the Animal Welfare Institute
Report Language Request
The National Child Abuse and Neglect Data System (NCANDS) was
established in response to the Child Abuse Prevention and Treatment Act
of 1988. It is a voluntary data collection system that gathers
information from all 50 States, the District of Columbia, and Puerto
Rico about reports of child abuse and neglect. The data are used to
examine trends in child abuse and neglect across the country, and its
key findings are published in its Child Welfare Outcome Reports, which
are submitted to Congress, and in its annual Child Maltreatment
Reports. In light of the acknowledged close relationship between child
maltreatment and animal abuse, and with exposure to animal abuse
considered an Adverse Childhood Event (ACE), the Committee encourages
the Department of Health and Human Services to expand its NCANDS
reports to add a category of ``animal abuse'' to the child and
caregiver characteristics and environmental factors that may place the
child at risk for maltreatment. Moreover, the Committee asks DHHS to
provide a report to the Committee within 90 days on any steps it may
have taken to make this change.
Justification
This language encourages DHHS to expand the data collected around
child abuse cases to include animal abuse. To more accurately examine
trends in child abuse and neglect, it is critical to pay attention to
animal abuse as a risk factor in the family. Having such information
will provide a better foundation for child abuse screening, prevention,
and treatment programs and would benefit children, families, and pets.
Animal abuse is a serious crime in and of itself, and well-
documented evidence has identified a strong link between it and many
forms of interpersonal violence. For example, committing animal abuse
is a better predictor of sexual assault conduct than previous
convictions for homicide, arson, or weapons offenses. In a violent
household, companion animals are often victims of the very same abuse
that children, intimate partners, and vulnerable adults are suffering.
A survey of families in New Jersey who had been referred for physical
child abuse found that animal abuse was also present in 88 percent of
those homes. As Dr. Lynn Loar wrote, ``The behavior that harms the
animal is the same behavior that harms the human.'' Decades of research
and practical experience have firmly established this link. In fact,
the first person to suspect that a family may be in crisis could well
be a law enforcement officer responding to an animal cruelty call.
There is growing understanding that being alert to the presence of
abused animals will help to protect not only the animals themselves but
also other members of the family.
Besides the direct abuse to which they may be subjected, children
are particularly vulnerable to suffering long-term adverse effects from
witnessing-or even being forced to participate in-the mistreatment of
their pets.
There is substantial evidence linking child and animal well-being:
--Children form close bonds with their pets, often referring to them
as their ``best friends,'' or reporting that they turn to them
when troubled.
--Threatening or actually harming a pet by a caretaker traumatizes
the child. Traumatized children are more likely to become
victims or perpetrators of violence.
--The threat of animal abuse to silence child sex abuse victims has
been a factor in a number of criminal convictions.
--Children who are cruel to animals are more likely to have been
maltreated than other children. Cruelty to animals as an
indicator of child maltreatment increases with the child's age,
persistence of behavior, and poorer social background.
--Children are exposed to a variety of traumatic experiences,
referred to as ``poly- victimization'' or Adverse Childhood
Experiences (ACE). To successfully intervene and treat children
and families, all forms of polyvictimization need to be
recognized. Animal abuse is one of them.
--Evidence of animal abuse has been introduced during child custody
hearings and in many of those cases, it has been one of the
factors leading to removal of children from one or both
parents. In one such case involving sexual abuse and neglect of
the children, the appellants motioned the court to sever the
animal cruelty charges from the sexual abuse charges; however,
the court declined, stating that the offenses were intertwined,
and evidence of ``animal cruelty was essential to establish the
physical abuse offenses.'' In reaching this conclusion, the
court considered that the animal abuse led to discovering the
child abuse, and that ``mistreatment of the animals greatly
reflected upon [the defendants'] state of mind when they
committed the physical and sexual abuse.'' Schambon v.
Commonwealth, 821 S.W.2d 804 (Ky. 1991)
The National Council of Juvenile and Family Court Judges has gone
all in in taking up this issue, working with the Animal Legal Defense
Fund to bring a wide array of training opportunities to judges to
expand their understanding of the relationship between animal cruelty
and child abuse and how important this understanding is to the work
they do with families. In a recent letter to her colleagues, Judge
Katherine Tennyson (ret.) let them know that NCJFCJ ``has developed a
resource, Toolkit for Starting a LINK Coalition in Your Community for
Guidance (https://nationallinkcoalition.org/wp-content/uploads/2013/01/
TOOLKIT.pdf) for community leaders, including judges, to help with the
skills and steps needed to form and sustain a coalition for addressing
the pressing, but underacknowledged, issues relating to the link
between animal abuse and interpersonal violence.''
NCJFCJ notes on its website that ``[t]hrough their authority to
issue protection and restraining orders, to remove children from
abusive homes, and to order youthful offenders into treatment or secure
placement, judges use the power of the courts to respond to cruelty and
abuse, to protect victims and prevent future harm. Judges also have the
opportunity to take measures to safeguard the wellbeing of an
overlooked member of the household and the community--pets and animals.
To do this effectively, they need to understand the links between
behavior involving violence against animals and interpersonal
violence.''
Thus, there is an urgent need for more complete information about
these patterns so that child welfare agencies and the courts can
understand how to intervene safely and effectively.
current data collected on child abuse
State child protection agencies voluntarily provide data to the
Federal Government under the National Child Abuse and Neglect Data
System (NCANDS), which tracks trends in child abuse and neglect across
the country. Case reports on the nearly 700,000 children abused
annually in the U.S. include a variety of details--such as the type of
abuse a child suffered or whether the caregiver had a substance abuse
disorder--that help researchers and service providers better understand
the factors associated with child abuse. There can be no doubt that
cruelty to animals, especially family pets, is such a factor. These
data help to inform the need for screening and preventive services and
to ``allow analysis of victim, caretaker, and perpetrator
characteristics, as well as responses to abused/neglected children in
need of services.''
Information collected under NCANDS has been used to determine, for
example, that children whose families face multiple stressors are at a
higher risk of being repeatedly referred to Child Protective Services,
and that some types of maltreatment are more likely to recur than
others. Adding animal abuse to the range of stressors that are measured
will give service providers and others a window into the lives of
abused children that they currently do not have and may help identify
children at risk who otherwise may have gone undetected.
[This statement was submitted by Submitted by Nancy Blaney,
Director,
Government Affairs.]
______
Prepared Statement of the Arthritis Foundation
On behalf of the more than 58 million adults and 300,000 children
living with doctor-diagnosed arthritis in the United States, the
Arthritis Foundation thanks Chairwoman Murray and Ranking Member Blunt
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 2023. We respectfully request: $11
billion in funding for the Centers for Disease Control and Prevention
(CDC)--and within that $54 million for the CDC Arthritis Program--and
$30 million for the Pediatric Subspecialty Loan Repayment Program to be
administered by the Health Resources and Services Administration
(HRSA).
cdc arthritis program
Arthritis affects 1 in 4 Americans and is the leading cause of
disability in the United States, according to the 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, making
evidence-based self-management programs critical for managing the
disease. The CDC is critical for the dissemination of evidence-based
programs, data collection and disease surveillance, and public health
research. The COVID-19 pandemic has exacerbated the challenges of
disease management, making interventions like exercise programs more
difficult to access and maintain. In FY 2023, Congress should increase
CDC funding to $11 billion to support key public health programs,
bolster critical infrastructure, improve disease surveillance and data
collection, and strengthen pandemic preparedness. Within that $11
billion, Congress should allocate $54 million for the Arthritis Program
to expand the reach of its services and resources.
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 followed 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.
Given the high prevalence and severity of this disease, the
Arthritis Program is woefully under-funded compared to the investment
in other chronic diseases. It is currently funded at $11 million, and
due to either reduced funding or flat funding in recent years, the
program has lost millions of dollars in purchasing power over the last
decade.
With full funding of $54 million, the program would be able to:
--Provide funding to all 50 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, MO, 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.
pediatric subspecialty loan repayment program (pslrp)
An estimated 300,000 children have arthritis, yet there are fewer
than 450 board-certified practicing pediatric rheumatologists in the
United States, mainly clustered in big cities and urban metro areas.
Shockingly, seven States have no pediatric rheumatologists and five
States have only one. Early diagnosis and treatment of arthritis is
critical for disease management, and it can be difficult for providers
untrained in pediatric rheumatology to diagnose arthritis.
The pediatric rheumatology workforce is stretched now more than
ever due to the pandemic. Serious shortages are causing decreased
access to care for young people, resulting in myriad complex
challenges, including entire days of missed work and school for the
child, siblings, and parents because of the length of time traveling to
the nearest specialist; families deciding to move to a different state
to be closer to a specialist, and having to travel by airplane to reach
the closest specialist.
The Pediatric Subspecialty Loan Repayment Program (PSLRP) was
funded for the first time in FY 2022 and will make loan repayment
available for pediatric subspecialists like pediatric rheumatologists
to practice in underserved areas. With initial funding of $5 million,
the number of applications HRSA can fund will be severely limited, yet
we anticipate demand will be high among pediatric subspecialists. We
urge the inclusion of $30 million in the FY 2023 appropriations bill to
build upon this important investment and address the ever-growing and
critical pediatric workforce shortage.
We thank the subcommittee for its commitment to the health and
wellbeing of all Americans. As you write the FY 2023 Labor-HHS-
Education appropriations bill, we urge the inclusion of $11 billion for
the CDC and $54 million within that for the CDC Arthritis Program, and
$30 million for the Pediatric Subspecialty Loan Repayment Program in
order to continue investments that improve the lives of people with
chronic diseases like arthritis. Please contact Anna Hyde, Vice
President of Advocacy and Access, at [email protected], with any
questions.
______
Prepared Statement of the Aspira Women's
Thank you for the opportunity to comment on the National Institutes
of Health (NIH) budget priorities for fiscal year (FY) 2023. We commend
the efforts of the NIH to identify gaps and barriers in women's health
and modernize priorities for research on the complete health of women.
We provide this testimony in support of increased funding within the FY
2023 Labor, Health and Human Services, and Education Appropriations
bill for endometriosis and ovarian cancer, with an increased focus and
attention on access and equity so all women can benefit from innovative
and transformative healthcare advancement.
As a women-led transformative women's health company, Aspira
Women's Health is focused on bringing innovative and proprietary
technologies to women where the healthcare system overall has failed to
address their unmet healthcare needs. Specifically, Aspira Women's
Health is currently the sole provider of OVA1, an innovative and the
only FDA-cleared blood test for ovarian cancer risk assessment when a
woman presents with a pelvic mass. We are also focused on a non-
invasive endometriosis blood-based detection test, as women suffering
from this debilitating condition are also severely underserved. Current
diagnostic and treatment options for endometriosis represent sub-
optimal care for women with this chronically painful condition that
often is mis-diagnosed or diagnosed years after the onset severe
symptoms.
Women's health issues continue to be under-represented in terms of
NIH resource allocation, with dire consequences. As it specifically
relates to endometriosis, there are several specific important issues
that need to be addressed. Foremost among them is that endometriosis is
an irreversibly debilitating disease known to cause a wide spectrum of
physical and psychological symptoms from chronic pain to infertility to
increased risk of suicide, yet it is regularly mis-diagnosed or
diagnosed up to 7-9 years after the onset of painful symptoms despite
it impacting 10-20 percent of the overall female population and 5-50
percent among women with infertility. These symptoms are extremely
painful and uncomfortable and range from pain during intercourse and
bowel movements to excessive bleeding. If this chronic pelvic pain is
detected and treated early, laparoscopy surgery may be avoided, saving
patients from invasive surgery and our healthcare system from
preventable expenditures. The total expenditures per patient are
similar to a Type 2 Diabetic patient, yet this condition is a silent,
pervasive, irreversible, and chronically painful and debilitating
disease impacting millions of women.
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
A non-invasive biomarker-based blood test would be a significant
improvement over surgery, and non-invasive methods for diagnosing
endometriosis would reduce related costs. However, these advancements
can't be realized unless funding for women's health issues is increased
exponentially, particularly for debilitating and deadly conditions like
endometriosis and ovarian cancer, respectively.
In addition to endometriosis, ovarian cancer also deserves
increased attention and investment. Ovarian cancer is pervasive, often
fatal and is frequently missed or mis-diagnosed, especially among Black
women. It is the only sex-specific cancer with greater than a 50
percent mortality rate. Comparatively, breast cancer and prostate
cancer have mortality rates lower than 10 percent. Today, Ovarian
Cancer accounts for more deaths than any other cancer of the female
reproductive system. In terms of public funding for research, there are
major disparities. An example is prostate cancer, which has a 2 percent
mortality rate, yet receives 50 percent more funding than ovarian
cancer from the NIH. Ovarian cancer disproportionately affects women of
color. For example, the all-cause mortality of Black women with ovarian
cancer is 1.3 times higher than white women, even when access to care
is equal. Furthermore, studies have shown that the risk of not
receiving surgical intervention remains high among Black women and
Hispanic women when compared to white women, and Black, Asian Pacific
Islander, and Hispanic women were all at significantly greater risk of
dying within the first 12 months of cancer diagnosis when compared to
white women. A way to address these key disparities is an increase in
funding for ovarian cancer research, especially among women of color,
as it is critical to improving patient outcomes in the populations that
suffer the most.
A clear example as to why research dollars are key to expanding
innovation is CA-125, the most widely used blood test for ovarian
cancer detection, discovered in the early 1980s. This biomarker has low
sensitivity for early-stage disease, approximately 50 percent, and may
be even lower among women of color. Between CA125's poor sensitivity
and the often asymptomatic nature of early-stage disease, as well as
other factors, it is estimated that over three quarters of ovarian
cancers are not discovered until they are in advanced stage. In
addition to this, CA125 can be elevated in many benign conditions,
resulting in false positives which can cause women to endure
unnecessary exploratory, invasive, and costly surgery.
Fortunately, there are innovations that improve outcomes, such as
the only multivariate index assay for assessing the risk of ovarian
cancer on the market, OVA1. OVA1 has an overall sensitivity of 92
percent and an early-stage sensitivity of 91 percent. In Black women, a
group for whom CA125 often provides inadequate risk assessment, OVA1
detected 79 percent of malignancies, compared to 63 percent by CA125.
When ovarian cancer is discovered and treated early, survival rates can
be greater than 90 percent. In advanced stage disease, however, the 5-
year survival can be under 20 percent. Furthermore, evidence suggests
that detecting ovarian cancer early costs nearly 84 percent less than
treating late-stage disease, based on the increased costs of
unnecessary care, making innovations in early detection of ovarian
cancer a cost-effective solution. Increased NIH funding would enable
additional advancements in ovarian cancer diagnoses and care, while a
focus on minority women would ensure improved patient outcomes for
those most likely to die of this disease.
As you draft the Labor Health, and Human Services appropriations
bill, I ask that you consider increased funding for endometriosis and
ovarian cancer. With additional Federal research funding, innovators
across the Nation can make significant improvements for women suffering
from these dehabilitating and deadly diseases. We appreciate your
consideration and your attention to endometriosis and ovarian cancer
when making funding allocations and policy decisions, while providing
increased focus and attention on access and equity so all women can
benefit from innovative and transformative healthcare advancement.
References
American Cancer Society (2021) https://report.nih.gov/funding/
categorical-spending#/
Oral E, Sozen I, Uludag S, et al. The prevalence of endometrioma
and associated malignant transformation in women over 40 years of age.
Journal of Gynecology Obstetrics and Human Reproduction.
2020;49(5):101725. doi:10.1016/j.jogoh.2020.101725.
Mu F, Rich-Edwards J, Rimm EB, Spiegelman D, Missmer SA.
Endometriosis and Risk of Coronary Heart Disease. Circ Cardiovasc Qual
Outcomes. 2016;9(3):257-264. doi:10.1161/CIRCOUTCOMES.115.002224.
Arion K, Orr NL, Noga H, et al. A Quantitative Analysis of Sleep
Quality in Women with Endometriosis. Journal of Women's Health.
2020;29(9):1209-1215. doi:10.1089/jwh.2019.8008.
Warzecha D, Szymusik I, Wielgos M, Pietrzak B. The Impact of
Endometriosis on the Quality of Life and the Incidence of Depression-A
Cohort Study. International Journal of Environmental Research and
Public Health. 2020;17(10):3641. doi:10.3390/ijerph17103641.
Lorencatto C, Petta CA, Navarro MJ, Bahamondes L, Matos A.
Depression in women with endometriosis with and without chronic pelvic
pain. Acta Obstetricia et Gynecologica Scandinavica. 2006;85(1):88-92.
doi:https://doi.org/10.1080/00016340500456118.
Endometriosis: Thousands share devastating impact of condition. BBC
News. https://www.bbc.com/news/health-49897873. Published October 6,
2019. Accessed April 13, 2021.
Fairbanks F, Abdo CH, Baracat EC, Podgaec S. Endometriosis doubles
the risk of sexual dysfunction: a cross-sectional study in a large
amount of patients. Gynecological Endocrinology. 2017;33(7):544-547.
doi:10.1080/09513590.2017.1302421.
______
Prepared Statement of the Association for Career and Technical
Education and Advance CTE
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 are writing to respectfully request
that the subcommittee increase funding for the Carl D. Perkins Career
and Technical Education Act's (Perkins V) Basic State Grant program,
administered by U.S. Department of Education's Office of Career,
Technical, and Adult Education, by $200 million- an overall amount of
$1.58 billion in the forthcoming Fiscal Year 2023 (FY23) Labor, Health
and Human Services, Education, and Related Agencies appropriations
bill. It is vital that Congress continues to build upon the recent
investments made in Perkins V in order to fully support the
implementation of the law and the over 11 million secondary,
postsecondary, and adult learners it serves across the Nation.
As you are aware, the Biden Administration formulated its FY23
Congressional budget request before Congress had yet finished work on
FY22 appropriations legislation. As a consequence, the Administration
used fiscal year 2021 funding levels as the starting point for
developing its FY23 request for Perkins V. For this reason, the
Administration proposed an ``artificial cut'' to Perkins V's basic
State grant program of $25 million dollars. Officials from the U.S.
Department of Education (ED) have since contended they support level-
funding for this program. Yet, as Congress continues to debate economic
competitiveness legislation and oversees the implementation of last
year's bipartisan infrastructure law, the need for highly skilled
workers has never been greater. Flat-funding for Perkins V's State
grant program would therefore be inadequate given the growing employer
need for skilled talent and learner demand for CTE programs that
provide on-ramps into these opportunities.
In addition, the Administration has also proposed the creation of a
new $200 million competitive grant program-roughly 15 percent of the
total size of all Perkins V funding-which the Administration has dubbed
the ``Career Connected High Schools'' initiative. This competitive
funding proposal would serve limited students overall, and unfairly
favor funding for eligible entities that already have the capacity to
write grants while penalizing smaller and more rural districts and
institutions. Distributing funding in this manner would likely further
exacerbate many longstanding inequities in our Nation. Given that this
proposal would fund activities that are largely duplicative of how
Perkins V State grant funding is already used, this additional funding
would be more efficiently and effectively deployed as part of the
Perkins Basic State Grant allocation instead. Doing so would ensure far
more learners are able to access high-quality CTE programs supported by
Perkins V formula dollars- which go to every State and Congressional
district-rather than this new competitive grant program which, by the
Administration's own estimates, would only support 32 grantees.
CTE at the secondary and postsecondary levels is an integral part
of ensuring an equitable and efficient implementation of last year's
bipartisan infrastructure legislation. According to the Brookings
Institution, at least 15 million new workers will be needed for United
States infrastructure in the next decade. In order to make good on
Congress's promise to rebuild America's infrastructure, CTE will
require robust funding to reskill the workforce in critical areas such
as construction, transportation, housing, utilities, and
telecommunications. CTE serves a critical role in preparing learners to
enter into in-demand sectors of the economy which have immediate and
longer-term hiring needs. CTE also is central to efforts to reskill and
upskill learners who have been displaced by economic forces outside of
their control or who have been sitting outside of the labor market for
one reason or another. Examining data from the last recession, the vast
majority of new and replacement jobs went to individuals with more than
a high school diploma, including 3.1 million jobs that went to those
with associate degree or postsecondary certificates.
Just as all education programs have been hit hard by the pandemic,
so have CTE programs. This has been exacerbated by the lack of
dedicated CTE funding within any of the pandemic response bills. What
sets CTE apart from other educational pathways is its focus on real-
world skills and applied learning. High-quality CTE programs provide
opportunities for direct engagement between industry and learners and
instructors, often include work-based learning experiences, and enable
learners to earn credentials of value. Yet what sets CTE apart is also
what has presented unique challenges during the pandemic era. CTE
programs are facing many of the same dire needs as the entire education
system, particularly those related to broadband and technology access,
digital curriculum, and teacher professional development. However, many
of the needs in CTE are exacerbated by the applied and lab-based nature
of many courses, the need for learners to meet certification
requirements, and the benefits of work-based learning and other
experiential programs. Each of these activities are resource-intensive
and even more challenging as a consequence of the pandemic.
CTE programs stand ready to provide employers a talent pipeline,
and prepare students for careers in high-skill, high-wage, or in-demand
industry sectors and occupations. To achieve this, CTE programs need to
be adequately resourced. Jobs that require more than a high school
diploma but less than a baccalaureate degree were growing quickly
before the pandemic and this trend is only expected to further
accelerate. Further, the twin forces of automation and globalization
require nimble, proactive, and responsive programs that provide
specific technical skills as well as more transferable competencies. As
jobseekers and employers have looked to recover from the economic
impacts of the pandemic, additional funding will ensure that the CTE
system is primed to support their needs.
Despite these needs, no pandemic aid package passed by Congress in
response to the public health emergency has included dedicated CTE
funding. At a time of record-inflation, CTE programs are
disproportionately impacted by pandemic-related financial challenges
because of the need to purchase and maintain the industry-standard
equipment required to adequately serve learners. Congress has an
opportunity to provide much-needed resources to CTE programs as part of
the FY23 appropriations process to begin to remedy some of these
ongoing challenges.
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.
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. Furthermore, those students are more
likely to continue their education-91 percent of high school graduates
who earned two to three CTE credits enrolled in college.
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. In fact,
90 percent of Americans agree that apprenticeships and skills training
programs prepare individuals for a good standard of living.
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. Every
dollar spent on secondary CTE students in Washington State leads to $26
in lifetime earnings and employee benefits, while individuals who
receive a certificate or degree from California Community Colleges
almost double their earnings within 3 years. In Wisconsin, taxpayers
receive $12.20 in return for every dollar invested in the technical
college system. Oklahoma's economy reaps a net benefit of $3.5 billion
annually from graduates of the CareerTech System. 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 $1.58 billion in the Perkins
V CTE State Grant program.
CTE programs are also preparing individuals with the skills that
employers seek. A recent survey found that employers believe CTE is
good for business, the economy, and public education, and the majority
of those surveyed reported that those from a CTE program are better
prepared with workplace, technical and real-world skills. Employers who
recruit from CTE programs are also more likely to report industry
growth. CTE programs have long provided unique opportunities for
learners to engage with employers and participate in internships,
apprenticeships, and other meaningful on-the-job experiences. Now more
than ever, CTE serves a critical role in supporting learners in their
reskilling or upskilling as they look to either re-enter the economy or
grow into new opportunities as part of our shared economy.
CTE programs prepare students for careers in in-demand fields and
provide an affordable pathway to both a family-sustaining career and
financial independence. Health care 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. Half of all STEM
occupations, which offer students high-skilled, high-wage career
opportunities, require less than a bachelor's degree. 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.
Moreover, CTE programs can be leveraged as an important talent pipeline
for occupational fields that are experiencing critical labor shortages
due to the pandemic and other factors, such as nursing and teaching.
CTE programs themselves can be harnessed to meet these needs directly,
via ``Grow Your Own'' programs, that would help to alleviate labor
shortages in these critical sectors of our economy.
Additionally, the demand for workforce credentials is growing. The
number of individuals earning certificates or associate degrees in CTE
fields, such as manufacturing, health care, and STEM, rose 71 percent
from 2002 to 2012. 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. 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. Meanwhile, 89 percent of executives agree there is a
talent shortage in the U.S. manufacturing sector, 5 percent higher than
2015 results. Other industries are also facing significant skilled
labor shortages as they emerge from the pandemic.
Funding Perkins V at adequate levels will ensure that educators can
equip students with the skills and related credentials they will need
for in-demand fields. This will become increasingly pressing as the
country continues to recover from the current public health and related
economic crisis. Already, healthcare jobs are projected to have the
largest increase of any occupational sector. Filling these and other
positions created as a result of the pandemic, as well as ensuring that
each individual is able to access the training needed for employment,
is critical.
CTE programs can serve even more learners and employers--but only
if they receive more resources. According to the most recent Job
Openings and Labor Turnover (JOLTS) Survey from the Bureau of Labor
Statistics, the ratio of unemployed workers to job openings is 0.6,
meaning that there are nearly two open jobs for every unemployed
person. This tight labor market underscores the immense demand for
skilled workers, especially as we seek to implement last year's
bipartisan infrastructure legislation. CTE remains a critical component
of the workforce pipeline for key industries that are needed to sustain
a long-term economic growth and recovery, such as health care, STEM,
manufacturing, construction and transportation distribution and
logistics.
However, 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 to build, expand and support
high-quality CTE programs. It is vital that Congress continues to build
upon the recent increases to Perkins V to ensure we have the talent
pipeline needed to fully recover from the jobs crisis caused by the
pandemic.
And there's widespread support for CTE: 94 percent of parents
approve of expanding access to CTE. 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. As
our recent analysis demonstrates, funding for CTE State Grants remains
$403 million below fiscal Year2004 enacted levels when using the Bureau
of Economic Analysis' (BEA) Personal Consumption Expenditures (PCE)
Price Index to adjust for inflation-the most conservative measure of
inflation over time.
Taking a longer view, before FY18, 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. Congress recognized the need to begin to reverse
this trend and from FY18 to FY22 provided an additional $262 million
for CTE State Grants, bringing the total investment to $1.38 billion.
While these budgets represented initial down payment 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 wider
American economy. Congress should build on the momentum from recent
years and continue to strengthen the investment in CTE State Grants in
FY23. And, Americans agree: 93 percent of voters support increasing the
investment in skills training.
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. CTE is both a proactive and responsive
strategy for attending to the economic downturn--CTE programs prepare
learners for lifelong success while also offering targeted skilled
training for others. We applaud the commitment to growing our
investment in Perkins V, and we urge the subcommittee to make CTE a top
priority in the forthcoming FY23 Labor, Health and Human Services,
Education, and Related Agencies appropriations bill. Now is not the
time to back away from our commitment to advancing high-quality CTE,
but rather the time to redouble our collective commitment to these
valuable programs and ensure CTE opportunities are available for every
learner.
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, Zach Curtis
([email protected]) or Advance CTE's Policy Advisor, Steve Voytek
([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 National Institute of Health (NIH) and National
Cancer Institute (NCI). ASCO is extremely grateful for the $2.25
billion increase for the NIH in fiscal year (FY) 2022. 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. ASCO appreciates this opportunity
to provide the following recommendations for FY 2023 funding to build
on our Nation's investment in biomedical research:
--National Institutes of Health (NIH): $49.048 billion
--National Cancer Institute (NCI): $7.766 billion
--Beau Biden Cancer Moonshot Initiative: $216 million
--Centers for Disease Control and Prevention's (CDC) Division of
Cancer Prevention and Control (DCPC): $462.6 million
--Cancer Registries Program: $61.4 million
the nih: a great investment
In FY 2020, the NIH provided over $34 billion in extramural
research to scientists in all 50 States and the District of
Columbia.\1\ NIH research funding also supported more than 536,000 jobs
and generated over $91 billion in economic activity in 2020.\2\
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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/2021/03/NIHs-Role-
in-Sustaining-the-U.S.-Economy-FINAL-3.23.21.pdf.
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The importance of federally funded biomedical research has never
been clearer than during the COVID-19 pandemic as scientists from all
corners of the country worked to quicky develop effective COVID-19
vaccines. Researchers racing towards a vaccine were not starting from
scratch; years of federally funded research led to the discovery and
identification of practical uses for messenger RNA, or mRNA, as used in
the Pfizer and Moderna vaccines. Prior to COVID-19, cancer researchers
were using mRNA to trigger the immune system to target specific cancer
cells. Building on previous scientific advancements, coupled with
collaboration across Federal agencies, academic institutions, and the
private sector, unprecedented flexibility, and reduction in regulatory
red tape, the resulting vaccines came to market at a record pace. This
remarkable achievement--built on years of research and scientific
discovery--is a testament to the need for continued investment.
Despite recent funding increases, the pandemic has resulted in
stagnant research progress and low clinical trial accrual rates,
stifling the progress of our biomedical research enterprise and
weakening our clinical trials networks. While our research
infrastructure is recovering, the funding levels we are requesting for
FY 2023 would continue to aid the recovery from these setbacks and
allow meaningful growth above biomedical inflation. The investment
would also allow the extraordinary progress seen pre-pandemic to
continue. Failure to sustain investment in research places health
outcomes and the scientific leadership and economic growth of the
country at risk.
the nci: the need for a renewed commitment
Over the last 30 years the cancer death rate has fallen 31 percent.
This includes a 2.4 percent decline from 2017 to 2018--a record for the
largest 1-year drop in the cancer death rate. However, even during a
global pandemic, cancer remains the second most common cause of death
in the United States. Almost 1.9 million new cancer cases will be
diagnosed, and more than 609,000 people will die from cancer in
2022.\3\
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\3\ American Cancer Society, Cancer Facts and Figures 2022; https:/
/www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-
statistics/annual-cancer-facts-and-figures/2022/2022-cancer-facts-and-
figures.pdf.
---------------------------------------------------------------------------
The NCI is the largest funder of cancer research in the world, with
most of its funding directly supporting research at NCI and at cancer
centers, hospitals, community clinics, and universities across the
country. ASCO is grateful to Congress for the FY 2022 funding provided
to the NCI. The increase is an important step towards increasing the
amount of R01 grants the NCI is able to fund. Despite the FY 2022
increase, however, the NCI's funding has not kept up with the growth of
research grant applications as compared to other NIH Institutes or
Centers. In 2021, the NCI was only able to fund 11 percent of viable
applications, compared to 28 percent in 1997. Even after accounting for
Cancer Moonshot funding, NCI's budget has not kept up with scientific
opportunity. ASCO supports the NCI's 15 by 25 initiative, in which the
Institute aims to fund 15 percent of grant applications by 2025. The
NCI's Professional Bypass Budget, released in December 2021, indicated
the Institute needs $7.766 billion in FY 2023 to stay on course to
reach this goal.
The Beau Biden Cancer Moonshot Initiative has provided a much
needed, albeit temporary, predictable increase in funding for the NCI.
In its 7 years, the Cancer Moonshot has initiated many new clinical
trial networks and established an infrastructure to conduct cancer
research and share resources on a massive scale. Funding for the
Moonshot will expire after this fiscal year, however. To leverage the
infrastructure created by the Cancer Moonshot requires sustained
investments beyond FY 2023.
President Biden has announced a reignited Moonshot, without
requesting any additional funding for the NCI. In fact, the
Administration's FY 2023 Budget included a cut to the NCI's budget.
These cuts would jeopardize our Nation's existing biomedical research
infrastructure and undercut ongoing efforts to advance scientific
knowledge for the treatment of cancers, and other important basic and
translational research. ASCO supports the President's reignited
Moonshot goals ``to reduce the death rate from cancer by at least 50
percent over the next 25 years, and improve the experience of people
and their families living with and surviving cancer--and, by doing this
and more, end cancer as we know it today.'' The toll COVID-19 will have
on cancer incidences in the future is not yet known. It is clear
already that the disruption of health services resulted in millions of
people who missed or postponed screenings or follow-ups as well as
patients already diagnosed who experienced treatment delays due to the
pandemic. The consequences of this interruption in care will become
evident in our cancer statistics in the years to come. The
Administration's ambitious goals simply cannot be met without
significant funding increases for NCI in anticipation of the end of the
authorized Cancer Moonshot funding and the threat of a cancer incidence
increase as a result of COVID-19.
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 from treatments 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 aged 12 and older identified as candidates to
benefit from those treatments because of a promising tumor biomarker
target identified in their cancer. TAPUR evaluates use of these
molecularly targeted anti-cancer drugs and collects data on clinical
outcomes. As of May 2022, the TAPUR study has over 2,400 patients
enrolled at 250 clinical sites in 28 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).
These programs expand clinical research beyond the academic environment
and allow access to clinical trials to a larger, more diverse patient
population, by bringing trials to the community setting. Just last
year, the NCI awarded 53 grants to researchers at 46 NCORP sites, 14 of
which are designated as minority/underserved community sites, which
have assembled more than 1,000 affiliates across the country to conduct
research. The NCORP network now covers 44 States and the District of
Columbia.\4\ 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 research.
---------------------------------------------------------------------------
\4\ National Cancer Institute; https://ncorp.cancer.gov/about/.
---------------------------------------------------------------------------
harnessing data & reducing disparities
A long-standing priority for ASCO is to ensure cancer treatments
and care considers patient demographics and social determinants of
health. While diverse, accessible clinical trials often offer the best
clinical treatment option for cancer patients, trials are not always
available, especially for smaller patient populations, such as
pediatric or rare disease groups.
As a compliment to inclusive trials, cancer providers and
researchers also need accessible data to understand cancer at a broader
level. The Centers for Disease Control and Prevention's (CDC) cancer
programs play an indispensable role in the prevention, detection, and
treatment of cancer. Approximately 50 percent of cancer deaths can be
prevented and the substantial cost of the treatment of advanced disease
could be reduced through the use of existing evidence-based prevention
and early detection strategies supported by CDC's Division of Cancer
Prevention and Control (DCPC).
Unfortunately, Federal funding for DCPC has remained almost flat
for many years. Between FY 2010 and FY 2022, DCPC funding increased by
just $19.5 million, or 5.3 percent, from $370.3 million to $389.8
million. Excluding funding for the WISEWOMAN heart disease program,
which is housed within the DCPC, the FY10- FY22 increase is just $8
million, or 2.9 percent. That's about $100 million less than if DCPC
funding had merely kept up with inflation.
To that end, ASCO joins the cancer community in requesting $462.6
million for the DCPC, and $61.4 million for the CDC's Cancer Registries
Program. Cancer registries are a critical tool for providers and
researchers, providing cancer surveillance, identifying trends among
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 toward greater trial inclusion, registries help ensure we
have data from underrepresented patient cohorts such as racial and
ethnic minorities, women, children, and rural populations.
working towards cures: a new approach
Modern cancer research delivers new treatments to patients faster
than ever, thanks to continuing innovation in research and regulatory
infrastructure. The continued investment Congress has made in cancer
research helps make progress possible. ASCO is committed to partnering
with Congress and the Administration to spur innovation and expediently
get treatments to patients.
As Congress and the Administration evaluate ways to improve our
National biomedical research enterprise through such efforts as the
creation of the Advanced Research Projects Agency-Health (ARPA-H), we
urge lawmakers to leverage collaboration between the private market,
biotech, health care companies, academic institutions, and government
and regulatory agencies. Fostering public-private partnerships and
standardization to accelerate discovery of clinically impactful
products is vital to helping patients. Additionally, efforts to
establish ARPA-H or otherwise reform the biomedical research enterprise
and health innovation should ensure sustained and dedicated funding to
achieve impactful translational research with demonstration of patient
benefit. It should not impact the current or future resources of
existing research enterprises.
The new agency should be transparent about its selection criteria
and decision-making process for its broad strategic goals and selection
of individual research projects, including clear metrics to ensure the
funds are being used to advance public health and meeting established
deliverables. Furthermore, innovation should come from peer-reviewed
science that provides evidence-based decision making for care, and the
findings should be published in peer-reviewed publications. All
patients should have access to clinical trials and the resulting
treatments conducted with investment by the agency, insurance coverage
and cost should not be a barrier to clinical trial participation and
equitable care and the agency should implement strategies to encourage
decentralization of trials and ensure diversity and equity in research.
ASCO recognizes and appreciates the work of Congress and the
Administration to establish ARPA-H and stands ready as a resource
throughout its creation and growth. ASCO does not have a specific
funding request for ARPA-H for FY 2023; we stand firmly by our
principles that the agency's funding should not come at the expense of
robust, predictable annual funding increases for the NIH, NCI, or other
existing research agencies.
ASCO again thanks the subcommittee for its continued support of
cancer patients in the U.S. through funding for the NIH, NCI, and CDC.
We look forward to working with all members of the subcommittee on an
FY 2023 budget that continues to advance U.S. cancer research. Please
contact Kristin Stuart at [email protected] with any questions.
[This statement was submitted by Howard Burris, MD, FASCO, Chair of
the Board, Association for Clinical Oncology.]
______
Prepared Statement of the Association for Professionals in Infection
Control and Epidemiology
The Association for Professionals in Infection Control and
Epidemiology (APIC) and the Society for Healthcare Epidemiology of
America (SHEA) urge appropriators to prioritize investments in the
following Federal programs:
------------------------------------------------------------------------
FY 2023 Funding
LHHS Programs Agency Request
------------------------------------------------------------------------
National Healthcare Safety CDC $100 million
Network
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Antibiotic Resistance CDC $397 million
Solutions Initiative
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Advanced Molecular Detection CDC $175 million
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Center for ForecastinCDCnd $50 million
Outbreak Analytics
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Agency for Healthcare Research AHRQ $500 million
and Quality
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
BARDA Broad Spectrum ASPR $300 million
Antimicrobials Program and
CARB-X Search
------------------------------------------------------------------------
Although significant progress has been made to have fewer reported
cases of COVID-19 in most States and hospitalizations decreasing, we
must continue to take this pandemic seriously. Planning and investing
for the next public health emergency must start today. While rapid
advances were made in treatments and vaccines to combat the virus,
severe gaps in healthcare were exposed and exploited by the virus.
Further, during the pandemic, healthcare facilities saw significant
increases in healthcare-associated infections (HAI) tracked by the
National Healthcare Safety Network.\1\ Additionally, CDC highlighted
reports of sporadic antibiotic resistant outbreaks in COVID-19 units
and higher rates of hospital-onset infections.\2\ It is believed,
nearly a decade worth of progress preventing these infections was lost
during the pandemic.
---------------------------------------------------------------------------
\1\ https://www.cdc.gov/hai/data/portal/covid-impact-hai.html.
\2\ https://www.cdc.gov/drugresistance/covid19.html.
---------------------------------------------------------------------------
As integral components of the Nation's public health
infrastructure, these programs must be funded at levels demanded by the
growing threat of existing and emerging infectious diseases. Moreover,
these programs will be important to improve the quality of care
delivered to Americans and crucial in preparing for the next public
health emergency.
We urge you to invest $100 million in the National Healthcare
Safety Network (NHSN). As the CDC's domestic tracking and response
system, NHSN equips healthcare facilities, public health departments,
and Federal agencies with accurate and actionable data to identify
emerging and persistent threats, such as COVID-19, HAIs, and antibiotic
resistant infections (ARI), as well as to deploy targeted infection
prevention interventions. NHSN is also the chosen platform for how
hospitals and nursing homes submit their monthly healthcare personnel
(HCP) COVID-19 vaccination data, to support CMS reporting requirements,
as well as for Hospital Compare. NHSN has played a key role in the
reduction in various HAIs over the 5 years prior to the pandemic (18 to
42 percent).\3\ Within 2 months of the National emergency declaration
for COVID-19,\4\ CDC swiftly adapted NHSN to track COVID-19 in nursing
homes where outbreaks have been the most severe.\5\ CMS relies on NHSN
data for public reporting and incentive payments for healthcare quality
performance, with NSHN data contributing to at least $350 million in
Federal savings.\6\ By leveraging electronic health records and
commercial infection control surveillance systems, NHSN innovates our
existing healthcare data infrastructure while bolstering our public
health data infrastructure. The stagnation in Federal funding over the
last 10 years cannot sustain the exponential expansion of NHSN from 300
in 2005 to more than 37,000 participating healthcare facilities in
2020--including hospitals, nursing homes, dialysis facilities, and
ambulatory surgical centers (ASCs) across the country. An increased
investment in NHSN would ensure CDC can provide adequate technical
support to participants, modernize NHSN to produce faster data while
reducing the administrative burden for healthcare facilities, and adapt
NHSN to respond to the current and future pandemics. Through greater
NHSN participation, CDC can leverage the data needed to establish
reliable national benchmarks, allowing healthcare facilities to measure
the progress of their HAI and ARI prevention efforts and ultimately
optimize antibiotic prescribing practices and eliminate HAIs.
---------------------------------------------------------------------------
\3\ https://www.cdc.gov/nhsn/pdfs/NHSN-FactSheet-
508.pdf?ACSTrackingID=USCDC_425-
DM47349&ACSTrackingLabel=Weekly%20Summary%3A%20COVID-19%20Healthcare%20
Quality%20and%20Worker%20Safety%20Information%20%E2%80%93%20February%201
%
2C%202021&deliveryName=USCDC_425-DM47349.
\4\ https://www.federalregister.gov/documents/2020/03/18/2020-
05794/declaring-a-national-emergency-concerning-the-novel-coronavirus-
disease-covid-19-outbreak.
\5\ https://www.cdc.gov/nhsn/pdfs/covid19/ltcf/cms-covid19-req-
508.pdf
\6\ https://www.cdc.gov/nhsn/pdfs/NHSN-FactSheet-
508.pdf?ACSTrackingID=USCDC_425-
DM47349&ACSTrackingLabel=Weekly%20Summary%3A%20COVID-19%20Healthcare%20
Quality%20and%20Worker%20Safety%20Information%20%E2%80%93%20February%201
%
2C%202021&deliveryName=USCDC_425-DM47349.
---------------------------------------------------------------------------
We urge you to invest $397 million in the Antibiotic Resistance
Solutions Initiative (ARSI). Even with the accelerated development of
new antibiotics, therapeutics, and vaccines, the growing trend in
antibiotic resistance underscores the urgency for the U.S. to increase
its investments in ARSI. Antibiotic resistance undermines medical
breakthroughs in life-savings drugs by quickly making new antibiotics
obsolete and threatening the success of cutting-edge treatments for
cancer, organ transplants, and other medical conditions that can be
complicated by infections. In addition, during the pandemic an alarming
number of Candida auris outbreaks emerged. This strain of yeast is
highly resistant to antibiotics and can target long-term care
settings.\7\ ARSI supports 50 State health departments, four large city
health departments, and Puerto Rico to detect, respond, and contain
antibiotic-resistant pathogens.\8\ CDC bridges the gap in local
laboratory capabilities and data-driven responses to antibiotic-
resistant threats through ARSI's Antibiotic Resistance Lab Network,
which equips the 55 States and localities with comprehensive lab
capacity and facilitates coordination of activities through seven
regional labs and the National Tuberculosis Molecular Surveillance
Center.\9\ Prior to the pandemic, the aggressive strategies of ARSI
have reduced deaths and hospitalizations from antibiotic resistance (18
percent and 28 percent fewer since 2013, respectively).\10\ Boosting
investments in ARSI would further strengthen the Nation's epidemiology,
laboratory, and diagnostics capacity to combat emerging antibiotic
resistance.
---------------------------------------------------------------------------
\7\ https://www.michigan.gov/mdhhs/inside-mdhhs/newsroom/2022/04/
20/mdhhs-announces-select-specialty-hospital.
\8\ https://www.cdc.gov/drugresistance/solutions-initiative/ar-lab-
network.html.
\9\ https://www.cdc.gov/drugresistance/pdf/cdc-ar-lab-network-
final-H.pdf.
\10\ https://www.cdc.gov/drugresistance/pdf/threats-report/
Prevention-Works-More-Action-Needed-508.pdf.
---------------------------------------------------------------------------
We urge you to invest $175 million in the Advanced Molecular
Detection (AMD) Initiative. AMD supports the integration of genomic
sequencing with bioinformatic and epidemiology to detect diseases
faster, identify and respond to outbreaks sooner, and protect people
from emerging and evolving disease threats. Through partnerships with
State and local health departments, public health laboratories, and
academic institutions, AMD increases access to the specialized
technologies and expertise necessary to empower public health
professionals at the frontlines to take action before disease-causing
pathogens become more widespread. As the Nation responded to the to the
COVID-19 pandemic, AMD was crucial to robustly tracking and combatting
emerging variants of COVID-19 in real-time. An increased investment in
AMD will better position the U.S. to respond more strategically and
effectively to endemic COVID-19 and future pandemics.
We urge you to invest $50 million in the CDC's new Center for
Forecasting and Outbreak Analytics. The Center for Forecasting and
Outbreak Analytics (CFA) is a new center established under the American
Rescue Plan. The Center was created to improve the Nation's ability to
prepare for and respond to infectious disease threats using data,
modeling, and analytics. It will bring together next-generation public
health data, disease experts, and public health emergency responders to
meet the needs of policymakers. While a new program, CFA already had an
impact during the COVID-19 pandemic by assembling models anticipating
the omicron wave. Continuously investing in these types of innovative
programs will allow policymakers to make better data-driven and timely
decisions during the current and future public health emergencies.
We urge you to invest $500 million for the Agency for Healthcare
Research and Quality (AHRQ). As the lead agency for health services
research and primary care research, AHRQ provide policymakers, health
system leaders medical providers, and patients with evidence-based
policies and practices to improve health care quality, safe, and value.
AHRQ also funds research at academic medical centers and other research
institutions, generating new knowledge and enhancing the effectiveness
of interventions to promote patient safety, prevent HAIs, and improve
patient outcomes. Greater investments in the evaluation of our
healthcare delivery system are critical to closing the gaps in
healthcare quality, spending, and outcomes.
We urge you to invest $300 million for Broad Spectrum
Antimicrobials and Combating Antibiotic-Resistant Bacteria
Biopharmaceutical Accelerator (CARB-X) at the Biomedical Advanced
Research and Development Authority (BARDA). Novel broad-spectrum
antimicrobials are vital to ensure timely, appropriate treatment of
infections, especially as antibiotics are becoming increasingly
ineffective due to drug resistance. The BARDA Broad Spectrum
Antimicrobials Program and CARB-X, programs within the office of the
Assistant Secretary for Preparedness and Response (ASPR), have
successfully supported the development of new FDA-approved antibiotics.
An investment in these programs will sustain the Nation's pipeline of
robust medical countermeasures to antimicrobial resistance.
The ongoing COVID-19 pandemic has highlighted the importance of
sustained investments in the Nation's infrastructure to protect combat
emerging infectious disease threats. With the growing prevalence in AR,
the challenges we face today will worsen 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 Association for Professionals in Infection
Control and Epidemiology and the Society for Healthcare Epidemiology of
America
The Association for Professionals in Infection Control and
Epidemiology (APIC) and the Society for Healthcare Epidemiology of
America (SHEA) urge appropriators to prioritize investments in the
following Federal programs:
------------------------------------------------------------------------
FY 2023 Funding
LHHS Programs Agency Request
------------------------------------------------------------------------
National Healthcare Safety Network CDC $100 million
Antibiotic Resistance Solutions CDC $397 million
Initiative
Advanced Molecular Detection CDC $175 million
Center for ForecCDCing an$50 million
Analytics
Agency for Healthcare Research and AHRQ $500 million
Quality
BARDA Broad Spectrum Antimicrobials ASPR $300 million
Program and CARB-X Search
------------------------------------------------------------------------
Although significant progress has been made to have fewer reported
cases of COVID-19 in most States and hospitalizations decreasing, we
must continue to take this pandemic seriously. Planning and investing
for the next public health emergency must start today. While rapid
advances were made in treatments and vaccines to combat the virus,
severe gaps in healthcare were exposed and exploited by the virus.
Further, during the pandemic, healthcare facilities saw significant
increases in healthcare-associated infections (HAI) tracked by the
National Healthcare Safety Network.\1\ Additionally, CDC highlighted
reports of sporadic antibiotic resistant outbreaks in COVID-19 units
and higher rates of hospital-onset infections.\2\ It is believed,
nearly a decade worth of progress preventing these infections was lost
during the pandemic.
---------------------------------------------------------------------------
\1\ https://www.cdc.gov/hai/data/portal/covid-impact-hai.html.
\2\ https://www.cdc.gov/drugresistance/covid19.html.
---------------------------------------------------------------------------
As integral components of the Nation's public health
infrastructure, these programs must be funded at levels demanded by the
growing threat of existing and emerging infectious diseases. Moreover,
these programs will be important to improve the quality of care
delivered to Americans and crucial in preparing for the next public
health emergency.
We urge you to invest $100 million in the National Healthcare
Safety Network (NHSN). As the CDC's domestic tracking and response
system, NHSN equips healthcare facilities, public health departments,
and Federal agencies with accurate and actionable data to identify
emerging and persistent threats, such as COVID-19, HAIs, and antibiotic
resistant infections (ARI), as well as to deploy targeted infection
prevention interventions. NHSN is also the chosen platform for how
hospitals and nursing homes submit their monthly healthcare personnel
(HCP) COVID-19 vaccination data, to support CMS reporting requirements,
as well as for Hospital Compare. NHSN has played a key role in the
reduction in various HAIs over the 5 years prior to the pandemic (18 to
42 percent).\3\ Within 2 months of the National emergency declaration
for COVID-19,\4\ CDC swiftly adapted NHSN to track COVID-19 in nursing
homes where outbreaks have been the most severe.\5\ CMS relies on NHSN
data for public reporting and incentive payments for healthcare quality
performance, with NSHN data contributing to at least $350 million in
Federal savings.\6\ By leveraging electronic health records and
commercial infection control surveillance systems, NHSN innovates our
existing healthcare data infrastructure while bolstering our public
health data infrastructure. The stagnation in Federal funding over the
last 10 years cannot sustain the exponential expansion of NHSN from 300
in 2005 to more than 37,000 participating healthcare facilities in
2020--including hospitals, nursing homes, dialysis facilities, and
ambulatory surgical centers (ASCs) across the country. An increased
investment in NHSN would ensure CDC can provide adequate technical
support to participants, modernize NHSN to produce faster data while
reducing the administrative burden for healthcare facilities, and adapt
NHSN to respond to the current and future pandemics. Through greater
NHSN participation, CDC can leverage the data needed to establish
reliable national benchmarks, allowing healthcare facilities to measure
the progress of their HAI and ARI prevention efforts and ultimately
optimize antibiotic prescribing practices and eliminate HAIs.
---------------------------------------------------------------------------
\3\ https://www.cdc.gov/nhsn/pdfs/NHSN-FactSheet-
508.pdf?ACSTrackingID=USCDC_425-
DM47349&ACSTrackingLabel=Weekly%20Summary%3A%20COVID-19%20Healthcare%20
Quality%20and%20Worker%20Safety%20Information%20%E2%80%93%20February%201
%2C%
202021&deliveryName=USCDC_425-DM47349.
\4\ https://www.federalregister.gov/documents/2020/03/18/2020-
05794/declaring-a-national-emergency-concerning-the-novel-coronavirus-
disease-covid-19-outbreak.
\5\ https://www.cdc.gov/nhsn/pdfs/covid19/ltcf/cms-covid19-req-
508.pdf.
\6\ https://www.cdc.gov/nhsn/pdfs/NHSN-FactSheet-
508.pd1f?ACSTrackingID=USCDC_425-
DM47349&ACSTrackingLabel=Weekly%20Summary%3A%20COVID-19%20Healthcare%20
Quality%20and%20Worker%20Safety%20Information%20%E2%80%93%20February%201
%2C%
202021&deliveryName=USCDC_425-DM47349.
---------------------------------------------------------------------------
We urge you to invest $397 million in the Antibiotic Resistance
Solutions Initiative (ARSI). Even with the accelerated development of
new antibiotics, therapeutics, and vaccines, the growing trend in
antibiotic resistance underscores the urgency for the U.S. to increase
its investments in ARSI. Antibiotic resistance undermines medical
breakthroughs in life-savings drugs by quickly making new antibiotics
obsolete and threatening the success of cutting-edge treatments for
cancer, organ transplants, and other medical conditions that can be
complicated by infections. In addition, during the pandemic an alarming
number of Candida auris outbreaks emerged. This strain of yeast is
highly resistant to antibiotics and can target long-term care
settings.\7\ ARSI supports 50 State health departments, four large city
health departments, and Puerto Rico to detect, respond, and contain
antibiotic-resistant pathogens.\8\ CDC bridges the gap in local
laboratory capabilities and data-driven responses to antibiotic-
resistant threats through ARSI's Antibiotic Resistance Lab Network,
which equips the 55 States and localities with comprehensive lab
capacity and facilitates coordination of activities through seven
regional labs and the National Tuberculosis Molecular Surveillance
Center.\9\ Prior to the pandemic, the aggressive strategies of ARSI
have reduced deaths and hospitalizations from antibiotic resistance (18
percent and 28 percent fewer since 2013, respectively).\10\ Boosting
investments in ARSI would further strengthen the Nation's epidemiology,
laboratory, and diagnostics capacity to combat emerging antibiotic
resistance.
---------------------------------------------------------------------------
\7\ https://www.michigan.gov/mdhhs/inside-mdhhs/newsroom/2022/04/
20/mdhhs-announces-select-specialty-hospital.
\8\ https://www.cdc.gov/drugresistance/solutions-initiative/ar-lab-
network.html.
\9\ https://www.cdc.gov/drugresistance/pdf/cdc-ar-lab-network-
final-H.pdf.
\10\ https://www.cdc.gov/drugresistance/pdf/threats-report/
Prevention-Works-More-Action-Needed-508.pdf.
---------------------------------------------------------------------------
We urge you to invest $175 million in the Advanced Molecular
Detection (AMD) Initiative. AMD supports the integration of genomic
sequencing with bioinformatic and epidemiology to detect diseases
faster, identify and respond to outbreaks sooner, and protect people
from emerging and evolving disease threats. Through partnerships with
State and local health departments, public health laboratories, and
academic institutions, AMD increases access to the specialized
technologies and expertise necessary to empower public health
professionals at the frontlines to take action before disease-causing
pathogens become more widespread. As the Nation responded to the to the
COVID-19 pandemic, AMD was crucial to robustly tracking and combatting
emerging variants of COVID-19 in real-time. An increased investment in
AMD will better position the U.S. to respond more strategically and
effectively to endemic COVID-19 and future pandemics.
We urge you to invest $50 million in the CDC's new Center for
Forecasting and Outbreak Analytics. The Center for Forecasting and
Outbreak Analytics (CFA) is a new center established under the American
Rescue Plan. The Center was created to improve the Nation's ability to
prepare for and respond to infectious disease threats using data,
modeling, and analytics. It will bring together next-generation public
health data, disease experts, and public health emergency responders to
meet the needs of policymakers. While a new program, CFA already had an
impact during the COVID-19 pandemic by assembling models anticipating
the omicron wave. Continuously investing in these types of innovative
programs will allow policymakers to make better data-driven and timely
decisions during the current and future public health emergencies.
We urge you to invest $500 million for the Agency for Healthcare
Research and Quality (AHRQ). As the lead agency for health services
research and primary care research, AHRQ provide policymakers, health
system leaders medical providers, and patients with evidence-based
policies and practices to improve health care quality, safe, and value.
AHRQ also funds research at academic medical centers and other research
institutions, generating new knowledge and enhancing the effectiveness
of interventions to promote patient safety, prevent HAIs, and improve
patient outcomes. Greater investments in the evaluation of our
healthcare delivery system are critical to closing the gaps in
healthcare quality, spending, and outcomes.
We urge you to invest $300 million for Broad Spectrum
Antimicrobials and Combating Antibiotic-Resistant Bacteria
Biopharmaceutical Accelerator (CARB-X) at the Biomedical Advanced
Research and Development Authority (BARDA). Novel broad-spectrum
antimicrobials are vital to ensure timely, appropriate treatment of
infections, especially as antibiotics are becoming increasingly
ineffective due to drug resistance. The BARDA Broad Spectrum
Antimicrobials Program and CARB-X, programs within the office of the
Assistant Secretary for Preparedness and Response (ASPR), have
successfully supported the development of new FDA-approved antibiotics.
An investment in these programs will sustain the Nation's pipeline of
robust medical countermeasures to antimicrobial resistance.
The ongoing COVID-19 pandemic has highlighted the importance of
sustained investments in the Nation's infrastructure to protect combat
emerging infectious disease threats. With the growing prevalence in AR,
the challenges we face today will worsen 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 Association for Psychological Science
aps recommendations for fiscal year 2023 appropriations
_______________________________________________________________________
--The Association for Psychological Science (APS) supports a funding
level of at least $49 billion for the National Institutes of
Health (NIH) in fiscal year (FY) 2023. Robust funding for this
essential health-research agency is necessary to ensure that
the country has the critical scientific research findings
required to improve human health and well-being.
--APS supports a funding level of at least $11 billion for the
Centers for Disease Control and Prevention (CDC) in FY 2023. As
COVID-19 becomes endemic and current and future disease-based
health threats loom, CDC must receive strong and reliable
funding to effectively carry out its programs.
--The behavioral and social sciences are essential to improving human
health, which is why APS recommends Congress include report
language urging continued funding of no less than $38.9 million
for the NIH Office of Behavioral and Social Sciences Research,
which leads and coordinates behavioral and social sciences
research supported by NIH. Likewise, APS asks that Congress
fund and integrate behavioral science research at CDC as part
of its ongoing efforts to ameliorate the negative impacts of
social determinants of health.
_______________________________________________________________________
statement of aps chief executive officer
Chair Murray, Ranking Member Blunt, and Members of the
subcommittee, thank you for the opportunity to provide testimony as you
consider funding priorities for FY 2023. I am Robert Gropp, Chief
Executive Officer of APS. APS is a nonprofit scientific organization of
25,000 scientists and students dedicated to advancing research
psychology for the benefit of science and society. APS recognizes and
appreciates the subcommittee's efforts to strengthen public health and
health research.
funding for the national institutes of health and its behavioral and
social sciences research programs
APS recommends a FY 2023 funding level of at least $49 billion for
NIH. This level of support is also recommended by the Ad Hoc Group for
Medical Research, a coalition of patient and voluntary health groups,
medical and scientific societies, academic and research organizations,
and industry that share a commitment to strengthening NIH. APS agrees
with the hundreds of members of this coalition that NIH-funded research
improves societal understanding of health science, prepares us to
better combat health threats, and translates research into
interventions and treatments that improve human health. In addition to
funding priorities, APS is concerned about the following policy topic
at NIH.
Support for behavioral and social sciences research at NIH: The
COVID-19 pandemic has provided us with many tragic examples of the ways
in which behavioral and social factors are linked with individual and
public health. APS members' research demonstrates that understanding
these behavioral and social influences is as essential to preventing
and responding to the pandemic-and other health issues-as is
understanding their biochemical, physiological, and general medical
underpinnings.
Although all NIH institutes and centers support behavioral and
social sciences research to some degree, NIH's Office of Behavioral and
Social Sciences Research (OBSSR) plays a centrally important and unique
role in coordinating these efforts across NIH, as well as leading
important projects such as, most recently, accelerating COVID-19
related testing, therapeutics, and vaccine research; understanding the
psychosocial outcomes of the pandemic; and testing approaches for more
effective health communication, especially as related to health equity.
OBSSR has also played a leading role in understanding how to prevent
injury and mortality caused by firearms and the violence related to
them. Given the importance of strong support for OBSSR, in partnership
with other organizations in the behavioral, brain, and population
sciences, APS urges that the following report language be included in
the FY 2023 Labor-HHS Report:
Office of Behavioral and Social Sciences Research (OBSSR).--The
Committee commends OBSSR for effectively coordinating and
supporting essential basic, clinical, and translational
research in the behavioral, social, and population sciences to
advance the NIH mission. Recognizing the critical role of OBSSR
to integrate these sciences throughout the NIH research
enterprise via OBSSR's leadership and coordination, the
Committee encourages NIH to continue to support OBSSR at no
less than the FY 2022 funding level including a proportionate
increase in its FY 2023 budget as provided to the NIH by the
Committee. The Committee urges NIH to provide an update on
OBSSR's activities and progress in the fiscal year 2024
congressional justification.
funding for the centers for disease control and prevention, and policy
issues
In support of the CDC Coalition, comprising organizations committed
to strengthening the country's public health infrastructure and
prevention programs, APS recommends a FY 2023 funding level of at least
$11 billion for CDC programs in the Labor-HHS bill. The CDC is central
to protecting the U.S. from the COVID-19 pandemic but also combatting
chronic diseases; resolving the opioid, tobacco, e-cigarette, and
obesity epidemics; and advancing other public health and prevention
programs. Again, psychological science provides the understanding of
human behavior that so often is the cause for these public health
problems. Psychological science research also offers insights about how
to support behavior changes that are the key to interventions that can
contribute to improved behaviors and public health.
APS further encourages your consideration of the following issue.
Support for research on social determinants of health at CDC: APS
is encouraged that Congress has made important investments in
addressing social determinants of health (SDOH), which are defined by
the Department of Health and Human Services as the conditions in the
environments where people are born, live, learn, work, play, worship,
and age that affect health, functioning, and quality of life. APS
supports ongoing investment in CDC's efforts to address SDOH and
stresses that fundamental and applied research in psychological science
and other fields is crucial for defining and understanding the factors
that affect health and developing evidence-based methods for their
remediation. In support of the basic and applied behavioral and social
sciences that lead to opportunities to improve well-being for all, APS
also urges that the following language be included in the FY 2023
Labor-HHS Report:
Behavioral Research and Social Determinants of Health.--The
Committee continues to support investments to better understand
the behavioral and social determinants of health and urges the
CDC to fund and integrate knowledge from behavioral science
research as a part of the effort to develop new evidence-based
interventions to ameliorate social determinants' potential
negative effects. The Committee believes that behavioral
science research focused on understanding the social
determinants of health can increase uptake of and adherence to
healthy behaviors that help prevent chronic conditions such as
cancer, heart diseases, and diabetes.
summary and conclusion
The thread shared by these two requests is that knowledge gained
from psychological science is essential to improving human health and
well-being. To illustrate, I respectfully direct you to the APS Global
Collaboration on COVID-19, which has brought together psychological
scientists and other experts to make recommendations on how our field
can be applied for these purposes. This collaboration has identified
that psychological and other behavioral science could have been better
applied throughout the COVID-19 crisis, that these fields remain poised
to contribute to COVID-19 and future health threats, and that new
research and research funding are urgently needed to best prepare our
country for future crises. I would be pleased to share further
information on this effort with any interested Members of the
subcommittee at your convenience.
Thank you for your ongoing commitment to supporting scientific
research, education, and training that improve health and well-being
and reduces disease in the United States and around the world. The one
million deaths in the U.S as a result of the COVID-19 pandemic, among
many other things, have been a heartbreaking reminder of the links
between human behavior and health; strong support for the important
Department of Health and Human Services programs referenced here will
improve our chances of ensuring that such a crisis exacerbated by human
behavior never occurs again.
[This statement was submitted by Robert Gropp, Chief Executive
Officer,
Association for Psychological Science.]
______
Prepared Statement of the Association of American Cancer Institutes
The Association of American Cancer Institutes (AACI), representing
104 premier academic and freestanding cancer centers across the United
States and Canada, appreciates the opportunity to submit this statement
for consideration by the subcommittee. AACI submits this request for
the Department of Health and Human Services budget for the National
Institutes of Health (NIH) as the subcommittee considers Fiscal Year
(FY) 2023 funding. AACI requests a $4.1 billion increase for the NIH
for FY 2023, bringing the recommended funding level for the NIH to $49
billion. This proposed level of NIH funding would ensure that academic
cancer centers can continue to discover and deliver potentially
lifesaving new therapies for patients with cancer. AACI also requests
at least $7.766 billion in FY 2023 for the National Cancer Institute
(NCI).
As Congress moves into the FY 2023 budget planning process, we
wanted to share our priorities related to the budget.
aaci cancer centers
AACI cancer centers are beacons of discovery, largely funded by the
NIH and 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 to patients--from prevention to
survivorship. These centers are at the forefront of the National effort
to eradicate cancer, yet progress in cancer research is complex. The
pace of discovery and translation of novel basic research to new
therapies can be accelerated by an appropriate and predictable
investment in Federal cancer funding.
payline
Uncertainty surrounding research project grants (R01s) 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 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.
We noted in FY 2020 that R01 grants for established and new
investigators were being funded to the 10th percentile, up from the 8th
percentile in FY 2019. In FY 2021, the grants were funded to the 11th
percentile,\1\ a slight increase. However, in FY 2022, R01 grants
flatlined at the 11th percentile for another year.\2\ We request that
Congress build on past by making a strong investment in the NCI in FY
2023. Steady increases from the FY 2022 11th percentile rate are
essential to achieving the goal set by former NCI Director Dr. Ned
Sharpless, to reach the 15th percentile by FY 2025. To continue in this
direction, we are hopeful that Congress will adopt the NCI Director's
Professional Judgment Budget Proposal of $7.766 billion for FY 2023.
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\1\ https://www.cancer.gov/grants-training/nci-bottom-line-blog/
2021/funding-from-congress-allows-nci-to-raise-grants-payline.
\2\ https://www.cancer.gov/grants-training/nci-bottom-line-blog/
2022/budget-increase-funds-a-growing-nci-grants-portfolio.
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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 1.9 million new cancer cases
diagnosed in the United States in 2022.\3\ 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. We join our colleagues in the
biomedical research community in recommending that the subcommittee
recognize the NIH as a national priority by enacting a final FY 2023
spending package that includes $49 billion for the NIH and $7.766
billion for the NCI.
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\3\ https://www.cancer.org/content/dam/cancer-org/research/cancer-
facts-and-statistics/annual-cancer-facts-and-figures/2022/2022-cancer-
facts-and-figures.pdf.
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A robust Federal investment in NCI-Designated Cancer Centers and
academic cancer centers will allow the cancer research community to
continue accelerating progress against cancer. We must continue to
build on this momentum or else we stand to lose an entire generation of
potentially lifesaving research.
[This statement was submitted by Jennifer W. Pegher, Executive
Director,
Association of American Cancer Institutes.]
______
Prepared Statement of the Association of American Medical Colleges
The AAMC (Association of American Medical Colleges) is a nonprofit
association dedicated to improving the health of people everywhere
through medical education, health care, medical research, and community
collaborations. Its members comprise all 155 accredited U.S. and 16
accredited Canadian medical schools; approximately 400 teaching
hospitals and health systems, including Department of Veterans Affairs
medical centers; and more than 70 academic societies. Through these
institutions and organizations, the AAMC leads and serves America's
medical schools and teaching hospitals and the millions of individuals
employed across academic medicine, including more than 191,000 full-
time faculty members, 95,000 medical students, 149,000 resident
physicians, and 60,000 graduate students and postdoctoral researchers
in the biomedical sciences. In 2022, the Association of Academic Health
Centers and the Association of Academic Health Centers International
merged into the AAMC, broadening the AAMC's U.S. membership and
expanding its reach to international academic health centers.
The COVID-19 pandemic is only one illustration of how sustained
support for the research, education, and patient care missions of
medical schools and teaching hospitals, with a strong commitment to
community collaborations, is essential to ensure a resilient health
care infrastructure prepared to respond to both novel and existing
threats. For FY 2023, the AAMC recommends the following for Federal
priorities essential in assisting medical schools and teaching
hospitals to fulfill their missions that benefit patients, communities
and the Nation: at least $49.048 billion for the National Institutes of
Health (NIH), in addition to any funding for the Advanced Research
Projects Agency for Health (ARPA-H); $500 million for the Agency for
Healthcare Research and Quality (AHRQ); $1.51 billion for the Health
Resources and Services Administration (HRSA) Title VII health
professions and Title VIII nursing workforce development programs, and
$718.8 million for the Children's Hospitals Graduate Medical Education
(CHGME) program; and at least $11 billion for the Centers for Disease
Control and Prevention (CDC).
The AAMC appreciates the subcommittee's longstanding, bipartisan
efforts to strengthen these programs. To enable the necessary support
for the broad range of critical Federal priorities, the AAMC urges
Congress to approve a funding allocation for the Labor-HHS subcommittee
that enables full investment in the priorities outlined below. To this
end, the AAMC joined nearly 400 organizations representing the
diversity of Labor-HHS stakeholders in a May 10 letter reiterating the
need for a robust funding allocation for the Labor-HHS-Education
subcommittee. The AAMC also supports the president's proposal to
supplement the annual HHS investments with mandatory funding to support
ongoing pandemic preparedness.
National Institutes of Health. Congress's longstanding bipartisan
support for medical research has contributed greatly to improving the
health and well-being of all, highlighted, for example, by the central
role medical research has played in combatting COVID-19. As illustrated
over the last 2 years, 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 together to improve the lives of
Americans through research. This partnership is a unique and highly
productive relationship that lays the foundation for improved health
and quality of life and strengthens the Nation's long-term economy.
The AAMC thanks Congress for a seventh straight year of bipartisan
support that resulted in the inclusion of $45 billion for medical
research conducted and supported by the NIH in the fiscal Year2022
omnibus spending bill. Additionally, the AAMC thanks the subcommittee
for recognizing the importance of retaining the salary cap at Executive
Level II of the Federal pay scale in fiscal year 2022.
In fiscal year 2023, the AAMC joins nearly 400 partners in
supporting the Ad Hoc Group for Medical Research recommendation that
Congress provide at least $49.048 billion in program level funding for
the NIH, which would represent an increase of $4.1 billion over the
comparable fiscal year 2022 funding level (an increase of $3.5 billion
or 7.9 percent in the NIH appropriation plus funding from the 21st
Century Cures Act for specific initiatives). Importantly, the Ad Hoc
Group strongly urges lawmakers to ensure that any additional funding
the subcommittee opts to provide for ARPA-H supplement our $49 billion
recommendation for NIH's base budget, rather than supplant the
essential foundational investment in the NIH. In addition, the
coalition supports the president's proposal to supplement NIH's budget
with additional mandatory funding to speed the pace of pandemic
response and readiness.
Securing a reliable, robust budget trajectory is key in positioning
the agency--and the patients who rely on the research it funds--to
capitalize on the full range of research in the biomedical, behavioral,
social, and population-based sciences. We must continue to strengthen
our Nation's research capacity, solidify our global leadership in
medical research, ensure a research workforce that reflects the racial,
gender, and geographic diversity of our citizenry, and inspire a
passion for science in current and future generations of researchers.
In addition to our strong support for a robust increase in NIH's
base funding, we look forward to working with lawmakers and the
administration to fulfill the goals of ARPA-H as it gets underway. The
nation's medical schools and teaching hospitals are hubs of innovation
in research and care delivery, and the AAMC looks forward to engaging
with lawmakers and the administration on opportunities to advance a
bold and productive medical research agenda in harnessing our shared
commitment to innovation and scientific discovery.
Agency for Healthcare Research and Quality. Complementing the
medical research supported by NIH, AHRQ sponsors health services
research designed to improve the quality of health care, decrease
health care costs, and provide access to essential health care services
by translating research into measurable improvements in the health care
system. The AAMC joins the Friends of AHRQ in recommending at least
$500 million in funding for AHRQ in FY 2023.
Health Professions Funding. The Health Resources and Services
Administration (HRSA) Title VII and Title VIII programs have helped the
country combat COVID-19, despite the challenges the pandemic posed for
grantees. Many grantees pivoted their curricula to educate our health
workforce during this public health challenge. There were unexpected
costs to provide personal protective equipment (PPE) for in-person
clinical training or switching to a virtual learning experience.
Simultaneously, the pandemic underscored the need to increase and
continuously reshape our health workforce. These programs have proven
successful in recruiting, training, and supporting public health
practitioners, nurses, geriatricians, mental health providers, and
other frontline health care workers critical to addressing COVID-19.
Additionally, HRSA has tasked grantees with utilizing innovative models
of care, such as training providers in telehealth, to improve patients'
access to care during the pandemic.
The COVID-19 pandemic pulled back the curtain on the pervasive
health inequities facing disadvantaged and underserved communities, and
gaps in care for our most vulnerable patients, including an aging
population that requires more health care services. The HRSA Title VII
and Title VIII programs educate current and future providers to serve
these ever-growing needs, while preparing providers for the health care
demands of tomorrow. A diverse health care workforce improves access to
care, patient satisfaction, and health professionals' learning
environments. Studies show that HRSA Title VII and Title VIII programs
increase the number of underrepresented students enrolled in health
professions schools, heighten awareness of factors contributing to
health inequities, and attract health professionals who are more likely
to treat underserved patients.
Further, the HRSA health professions and nursing workforce programs
are structured to advance new delivery systems and models of care, such
as those promoting interprofessional teams and integrating mental
health services with primary care. Whether developing a new curriculum
to address emerging and ongoing public health crises, such as substance
use disorders, or collaborating with community leaders in educating
providers to deliver culturally competent care, the Title VII and Title
VIII programs help ensure our health workforce is at the forefront of
meeting all patients' health needs. The AAMC joins the Health
Professions and Nursing Education Coalition (HPNEC) in recommending
$1.51 billion for these critical workforce programs in fiscal year
2023. Additionally, the AAMC supports the president's proposal for at
least $50 million to fund the recently enacted Dr. Lorna Breen Health
Care Provider Protection Act (Public Law 111-105). Funding from the
American Rescue Plan allowed HRSA to support several programs to
prevent burnout in the health care workforce and promote clinician
well-being, but HRSA received far more high-quality applications than
resources allowed the agency to support.
In addition to Title VII and Title VIII, HRSA's Bureau of Health
Workforce also supports $718.8 million in FY 2023 for the CHGME
program, which provides critical Federal graduate medical education
support for children's hospitals to train the future primary care and
specialty care workforce for our Nation's children. We also encourage
Congress to provide robust funding to HRSA's Rural Residency Programs
to expand training opportunities in rural areas through funding to
develop new rural residency programs or separately accredited rural
training track programs.
The AAMC encourages Congress to provide long-term sustained funding
for the National Health Service Corps (NHSC) through its mandatory and
discretionary mechanisms. We were appreciative of the $800 million in
supplemental funding for the NHSC in the American Rescue Plan (H.R.
117-2), and we support an appropriation for the NHSC that would fulfill
the needs for current Health Professions Shortage Areas.
Centers for Disease Control and Prevention. The AAMC joins the CDC
Coalition in a recommendation of at least $11 billion for the CDC in FY
2023. In addition to ensuring a strong public health infrastructure and
protecting Americans from public health threats and emergencies, CDC
programs are crucial to reducing health care costs and improving
health.
Within that total, the AAMC joins nearly 300 national, State, and
local medical, public health, and research organizations in supporting
the president's proposed $35 million to increase funding for firearm
safety research supported by CDC. The AAMC also supports the
administration's proposal to double firearm morbidity and mortality
prevention research funding at NIH to $25 million in FY 2023 and to
provide $250 million to CDC for a new community violence intervention
initiative.
Also within the CDC total, the AAMC supports increased or new
funding for:
--Data Modernization Initiative (DMI): $250 million
--Center for Forecasting and Outbreak Analysis (CFA): $50 million
--Climate and Health Program: $110 million
--Advanced Molecular Detection (AMD) program: $175 million
Additional Programs. The AAMC also supports at least $474 million
for the Hospital Preparedness Program within the Office of the
Assistant Secretary for Preparedness and Response (ASPR), in addition
to $40 million to continue the regional preparedness programs created
to address emerging and other special pathogens, including funding for
regional treatment centers, frontline providers, and the National
Emerging Pathogen Training and Education Center (NETEC).
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 2023 spending bill.
______
Prepared Statement of the Association of Farmworker Opportunity
Programs
Chair Murray and Ranking Minority Member Blunt:
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 57-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 2023 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 ($109,000,000); and Susan Harwood Training
Grants, DOL Occupational Safety and Health Administration
($13,787,000). Not only do these programs maximize the Federal
Government's investment in them, but 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, well-trained, skilled workers. Administered by DOL, NFJP
provides funding through a competitive grant process to 54 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 farmworkers 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 available quality 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 the 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 each of DOL's
performance goals. In 2020 alone, NFJP service organizations provided
more than 20,000 agricultural workers with services, according to DOL.
Extrapolating, these NFJP providers have served over 200,000
agricultural workers and their family members over the last 10 years.
Funding program this year at $109,000,000_the level set in the House
Education and Labor Committee-approved WOIA reauthorization bill (H. R.
7309)--would allow NFJP to train an even greater number of 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 supports appropriations for OSHA's 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 236 trainers in 35
States trains agricultural workers on how to protect against pesticide
poisoning. Trainers then follow up with agricultural workers to assess
knowledge gained and retained, and changes in labor practice. Since
1995, more than 620,000 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 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 $49
billion in base funding in fiscal year (FY) 2023. AIRI also commends
Congress for continuing to reject harmful policies such as reducing
support for facilities and administrative (F&A) costs or investigator
salary support on NIH grants. In addition, AIRI looks forward to
working with the subcommittee and the Biden Administration to explore
how the newly established Advanced Research Project Agency for Health
(ARPA-H) can support high-risk, high-reward research to accelerate the
pace of biomedical innovation. AIRI urges the subcommittee to ensure
that any funding provided for ARPA-H supplements, and does not
supplant, the NIH's base budget funding. The promise of ARPA-H rests on
the foundational research that NIH supports through its base budget.
AIRI is a national organization of more than 80 independent, non-
profit research institutes that perform basic and clinical research in
the biological and behavioral sciences. AIRI institutes vary in size,
with budgets ranging from a few million to hundreds of millions of
dollars. In addition, each AIRI member institution is governed by its
own independent Board of Directors, which allows our members to focus
on discovery-based research while remaining structurally nimble and
capable of adjusting their research programs to emerging areas of
inquiry. Investigators at independent research institutes consistently
exceed the success rates of the overall NIH grantee pool, and they
receive nearly 10 percent of NIH's peer-reviewed, competitively awarded
extramural grants.
AIRI thanks the subcommittee for providing an increase of $2.03
billion for NIH in the FY 2022 omnibus appropriations package. 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 cancer, Alzheimer's Disease, emerging infectious diseases, and
the opioid crisis, among others. In addition, NIH's instrumental role
in developing new vaccines to combat the COVID-19 pandemic reminds us
that now is not the time to pull back 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 and
ensuring that we are prepared for the next public health crisis. To
ensure cutting-edge research at independent research institutes is not
disrupted, AIRI strongly supports a topline of $49 billion for NIH in
FY 2023.
AIRI looks forward to working with Congress and the Biden
Administration to examine how the establishment of ARPA-H can push the
research enterprise to take on high-risk, high-reward research efforts.
If successful, ARPA-H has the potential to address grand challenges in
public health that were previously thought to be impossible to solve.
However, we still do not fully understand many of the basic mechanisms
underlying diseases and public health challenges facing the Nation
today, such as cancer, Alzheimer's, and addiction, among others.
Funding for fundamental research is still crucial to address these
issues, and AIRI urges the subcommittee to ensure that basic research
discovery funded by the NIH can adequately inform the transformative,
applied research that ARPA-H has the potential to carry out.
Not only is NIH research essential to advancing health, it also
plays a key economic role in communities nationwide. In FY 2021, NIH
invested $35.73 billion, over 80 percent of its budget, in the
biomedical research community. This investment supported more than
552,444 jobs nationwide and generated nearly $94.18 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.
---------------------------------------------------------------------------
\1\ NIH's funding information and economic impact data comes from
United for Medical Research's 2022 Update on NIH's Role in Sustaining
the U.S. Economy, https://unitedformedicalresearch.org/annual-economic-
report/.
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The NIH model for conducting biomedical research, which involves
supporting scientists at independent research institutes, medical
centers, and universities 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 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.
The U.S. has the most robust medical research enterprise in the
world, but our leadership in biomedical research is being challenged by
the investments being made in the research capacity of other nations,
such as China. While the most recent funding increases to the NIH
budget will greatly help sustain biomedical research in the U.S., it is
important to continue providing stable funding to uphold our biomedical
excellence.
AIRI 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 $49 billion for the NIH's base budget in FY 2023 and
reaffirming that any funding for ARPA-H supplements the base budget
funding to strengthen our Nation's investment in life-saving medical
research.
______
Prepared Statement of the Association of Minority Health
Professions Schools
summary of fiscal year 2023 recommendations
_______________________________________________________________________
Health Resources and Services Administration:
--$1.51 billion for the Health Resources and Services Administration
(HRSA) Title VII health professions and Title VIII nursing
workforce development programs.
--$47.42 million for HRSA's Minority Centers of Excellence
--$47.95 million for HRSA's Health Careers Opportunity Program.
--$2 million for HRSA's Minority Faculty Loan Repayment Program.
--$67 million for HRSA's Scholarships for Disadvantaged Students
(SDS).
--$67 million for HRSA's Area Health Education Center (AHEC)
Program
Centers for Disease Control and Prevention
--$74 million for the Racial and Ethnic Approaches to Community
Health (REACH) Program
National Institutes of Health
--$49 billion for the National Institutes of Health
--$1 billion for the National Institute on Minority Health and
Health Disparities (NIMHD).
--$300 million for the Research Centers at Minority Institutions
(RCMI)
--$200 million in new, annual research funding dedicated
specifically targeted at enabling historically black health
professions schools to support research that reverses
health status disparities among minority Americans.
--$100 million for NIH's Extramural Research Facilities program
--$50 million to reinvigorate the NIMHD's Research Endowment
Program (REP)
Office of the Secretary
--$72 million for the Office of Minority Health at the Department of
Health and Human Services.
--$5 billion in new funding designated for Historically Black Health
Professions Institutions for the improvement and development of
health care infrastructure.
Department of Education
--$100 million for the Strengthening Historically Black Graduate
Institutions (HBGI) Program.
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, and distinguished members
of the subcommittee, thank you for the opportunity to submit testimony
and thank you for your leadership in addressing challenges facing the
health workforce, health disparities, and medically underserved
communities. I am Dr. Kathleen Kennedy, Malcolm Ellington Professor of
Health Disparities Research and Dean, College of Pharmacy Xavier
University of Louisiana and the Chair of the Association of Minority
Health Professions Schools (AMHPS), which was established in 1976 to
promote a national minority health agenda by addressing the needs of
the health workforce and improving health status in medically-
underserved communities. Speaking to you today against the backdrop of
the continued COVID-19 pandemic with hope on the horizon, we have
learned valuable lessons over the past 2 years, but we know that there
is more work to be done. The pandemic has pulled back the curtain on
what many of AMHPS institutions know and work towards everyday: the
pitfalls and shortcomings of minority health. Given the recent deluge
of media coverage surrounding this disheartening topic, the country is
primed and ready to act in a meaningful way. Our funding
recommendations are robust and we realize ambitious, however there have
rightfully been discussion concerning the devastating effect of the
pandemic on people of color and the need to address this effect for any
future pandemic. To be as clear we can be, there must be more robust
investment on minority health and disparities. To achieve this we know
that it will require the steadfast leadership of health equity
champions. We stand ready to work with you and your colleagues to
facilitate these efforts.
AMHPS is comprised of the 12 historically black medical, dental,
pharmacy, and veterinary schools in the United States. The members are
two schools of dentistry at Howard University and Meharry Medical
College; four schools of medicine, at Charles R. Drew University,
Howard University, Meharry Medical College, and Morehouse School of
Medicine; five schools of pharmacy, at Florida A&M University, Howard
University, Texas Southern University, Hampton University, and Xavier
University; and one school of veterinary medicine, at Tuskegee
University. Today, the association assists its member institutions in
the expansion and enhancement of educational opportunities in the
health professions for minorities and disadvantaged students and
disadvantaged people. AMHPS continuously adheres to is founding call
and honors its threefold mission to improve the health status of blacks
and other minorities; improve the representation of blacks and other
minorities in the health professions; strengthen our institutions and
programs and to strengthen other programs throughout the Nation, which
in turn will improve the role of minorities in the provision of health
care.
Health disparities across racial and ethnic groups in the U. S.
have been well documented over the last several decades and have
remained remarkably persistent in spite of the changes in many facets
of the society over that period. Moreover, the benefits of increasing
diversity in the health professions to reduce such disparities have
been studied at length, are based on empirical data, and are well
understood by the medical community. Examples of these benefits
include:
--Minority physicians are more likely to practice in medically
underserved areas and care for patients regardless of their
ability to pay.
--Minority physicians are more likely to choose primary care
practices.
--Evidence suggests that improving cross-cultural communication
between doctors and patients and providing patients with access
to a diverse group of doctors improve adherence, satisfaction
and health outcomes.
--There is evidence that the intellectual, cultural sensitivity,
competency, and civic development of students is enhanced by
learning in a diverse educational environment.
--A diverse health workforce encourages a greater number of
minorities to enroll in clinical trials designed to alleviate
health disparities.
There is little left to discover or dispute with respect to the
benefits of achieving greater racial and ethnic diversity of the
Nation's health professionals--the attention has once again shifted to
identifying the most effective and sustainable methods to do so. While
there are many national campaigns underway to increase diversity in all
medical and health professions schools particularly during this period
of enrollment growth, it is imperative that we further recognize and
leverage the public value of Historically Black Health Professions
Schools.
The daunting news that Blacks Americans in the U.S. are
disproportionately suffering and dying from the novel coronavirus
(COVID-19) unfortunately was not a tremendous surprise to those of us
who regularly monitor and understand health status disparities in this
nation. There are well-known health status challenges faced daily by
Black Americans and minority health care providers, it also represents
a surrogate for the glaring lack of health infrastructure in medically
under-served communities. At AMHPS institutions, we have long been and
remain committed to addressing these very same disparities in whatever
way that we can, with an eye first and foremost towards the communities
with the greatest need across our country.
Ironically, as a result of their mission focus the financial models
of historically black health professions schools are uniquely
disadvantaged compared to most of their peer institutions. Unlike
subspecialty-oriented, research-intensive institutions--with higher
margin clinical services, an integrated hospital system, substantial
research enterprises, sizeable endowments, and a critical mass of
wealthy donors--these institutions are faced with an unprecedented set
of adverse factors that challenge their financial viability.
Consequently, they are disproportionately dependent on the various
Federal programs that support their core purpose.
Specifically, these programs include: the Title VII Health
Professions Training Programs administered by the Health Resources and
Services Administration (HRSA) of the Department of Health and Human
Services (HHS); the Research Centers at Minority Institutions (RCMI),
the Extramural Research Facilities; the Research Endowment; and Centers
of Excellence programs administered the National Institutes of Health's
National Institute on Minority Health and Health Disparities; and the
Historically Black Graduate Institution (HBGI) program administered by
the Office of Postsecondary Education of the U.S. Department of
Education (DOE).
President Biden recently signed the John Lewis NIMHD Research
Endowment Revitalization Act to revitalize this important initiative,
and it is our expectation that NIMHD will act swiftly to reinvigorate
the research endowment program so minority-serving institutions can
participate in this competitive opportunity to build their research
endowments in a manner consistent with the statutory goal of assisting
them in achieving a research endowment that is comparable to the
endowments of other schools in their health professions discipline. The
NIMHD Research Endowment Program (REP) allows academic institutions to
build research infrastructure and recruit, train, and maintain a
diverse faculty and student body. Robust funding would allow active and
former NIMHD Centers of Excellence to continue their historic focus on
research to close the gap between the burden of illness and premature
mortality experienced more commonly by communities of color, as well as
other medically underserved populations. It would also help improve
access to grants to fund research projects, as well as hire staff and
provide scholarships for students who come from underserved
communities. To ensure successful implementation, we are asking for the
Committee to allocate robust funding to NIMHD for this program.
Madam Chair, unfortunately, over the past several years funding for
diversity-focused programs has deteriorated in varying degrees. Absent
a monumental overall investment the financial position and academic
viability of historically black health professions schools will
deteriorate rapidly. The front loaded investment in health professions
training programs, graduate programs in biomedical sciences and public,
and safety net providers is more cost effective than absorbing
uncompensated care originating from minority and underserved
communities. Now is the time for targeted investments in historically
black health professions schools to ensure a steady pipeline of
minority healthcare providers, biomedical scientists, and other health
practitioners prepared to support and advance the delivery of high
quality, culturally appropriate, evidence-based health care. Thank you
all again for the opportunity to share the priorities of the
Association of Minority Health Professions Schools.
[This statement was submitted by Kathleen B. Kennedy, Pharm.D.,
Chair,
Association of Minority Health Professions Schools, Inc.
______
Prepared Statement of the Association of Schools and Programs of Public
Health
On behalf of the Association of Schools and Programs of Public
Health (ASPPH), thank you for the opportunity to submit outside witness
testimony concerning Fiscal Year (FY) 2023 appropriations for agencies
and programs impacting the academic public health community. ASPPH is
the leading voice of academic public health and we are focused on
growing the high-quality public health workforce of the future. We
represent 137 schools and programs of public health accredited by the
Council on Education for Public Health (CEPH). Our membership includes
over 10,800 faculty and over 72,000 students. ASPPH strives to
strengthen the capacity of members by advancing leadership, excellence,
and collaboration in public health education, research, and practice.
We want to thank the subcommittee for its steadfast support of
public health programs that span the fiscal Year23 Labor, Health and
Human Services, Education and Related Agencies (Labor-HHS-ED)
appropriations bill. In addition to the ongoing demands of our public
health system, the current pandemic has challenged the public health
community's response to protect the American people and global
populations. Your subcommittee has continued to provide the critical
financial resources to advance those efforts. With our Nation reaching
the 1 million death toll due to COVID-19, we underscore strong
investments in public health initiatives at a time we need it the most.
This pandemic is far from over.
As you draft the Labor-HHS-ED appropriations bill, please consider
ASPPH's funding recommendations that support the mission of our 137
academic institutions. These agencies and programs provide the
essential resources to advance evidence-based approaches to public
health threats and prepare future generations of public health
practitioners. These investments will lead to tangible public health
outcomes that will benefit the Nation and the world.
Our FY 2023 funding recommendations for the leading HHS public
health agencies are aligned with many other organizations in the public
health community:
National Institutes of Health (NIH): We are grateful for bipartisan
support for continuous increases to the NIH budget and join several
organizations in supporting $49.0 billion for ongoing work of
Institutes and Centers, an increase of $4.1 billion or 9 percent above
the fiscal Year2022 enacted level. Public health research is a critical
component of the NIH's research portfolio. In addition, we support $1.0
billion for the second-year appropriation of the Advanced Research
Projects Agency for Health (ARPA-H), which is the same as the FY 2022
appropriation that remains available into FY 2023. Within NIH, we
support at least $110.0 million for NIH Fogarty International Center,
an increase of $23 million or 26 percent above the FY 2022 enacted
level. The investment in Fogarty is an investment in the health of all
Americans by providing support for vital global research and training
to both prevent newly emerging infectious agents from becoming domestic
calamities and to help us reduce the rising rate of noncommunicable
diseases and the health impact of chronic conditions around the world.
Health Resources and Services Administration (HRSA): Programs
within HRSA are essential to ensuring an adequately trained public
health workforce. We support $9.8 billion, an increase of $1.2 billion
or 14 percent above the FY 2022 enacted level. Specifically, within
HRSA we request:
HRSA Public Health Workforce Loan Repayment Program: $200 million
for a new program that provides up to $150,000 in loan repayment in
return for service in a State, local, Tribal or territorial health
department. In 2010 Congress authorized this critical program, but it
has not been funded at the necessary level to make an impact.
Therefore, student loan debt is a major obstacle to students seeking
careers in governmental public health due to low-paying, entry-level
jobs that are available in health departments. Loan repayment will
allow our Nation to strengthen the capacity of the public health
workforce, at this critical moment, with the next generation of
professionals who have the educational training in public health and
related disciplines. This is a vital program will help public health
graduates make significant contributions to advance the field of public
health practice, particularly in preparation for the next public health
crisis
HRSA Public Health Training Centers: at least $15.0 million, an
increase of $5.3 million or 55 percent above the fiscal Year2022
enacted level. The Public Health Training Center Program is the
Nation's only comprehensive training system to ensure workers in
healthcare, behavioral health, public health and other fields have the
skills needed to respond to increasingly complex public health
challenges and protect the Nation's health.
Centers for Disease Control and Prevention (CDC): As public health
experts predict an increase in as many as 100 million COVID-19 cases in
the coming months, we urge stronger investments in CDC to protect the
health of our communities. Additionally, due to years of underfunding,
many programs at the CDC have lacked necessary resources to address the
various health challenges our Nation continuously grapples with. Robust
support for the CDC budget is critical to enable proper tools for the
agency to carry out its prevention mission and ensure translation of
research on the community level. We support $11.0 billion, an increase
of $2.6 billion or 31 percent above the FY 2022 enacted level.
Specifically, within the CDC we support:
CDC Center for Forecasting and Outbreak Analytics: $50 million to
continue this new CDC center that was initially funded through the
American Rescue Plan Act. The center supports the President's National
Security Memorandum-1 which called for the establishment of a national
capability that would support the U.S. Government and our partners with
advanced analytics, disease modeling and outbreak analytics. The center
will bring together next-generation public health data, expert disease
modelers, public health emergency responders, and high-quality
communications to meet the needs of decision makers. We strongly
encourage the Committee to facilitate the center's continuous work with
schools of public health and other academic institutions to engage the
Nation's expertise in disease modelling, public health data analysis,
research, and training to build workforce capacity in this emerging
field.
CDC Climate and Health: $110 million, an increase of $100 million
above the FY 2022 enacted level. CDC's Climate and Health Program
supports state, Tribal, local, and territorial public health agencies
as they prepare for the health impacts of a changing climate. Academic
public health institutions are engaged in essential research and
training to establish and support a workforce of public health
professionals with competencies to understand and address the impacts
of climate change on public health. ASPPH has developed a climate
framework that will enable all of our member institutions to make an
impact on public health climate issues in collaboration with local,
State and the Federal Government. We urge the Committee to include
funding to support academic public health partners to expand research,
strengthen public health workforce education and training, and foster
practice-based partnerships to design and implement mitigation and
adaption strategies related to climate change.
CDC Prevention Research Centers: $37.0 million, an increase of
$10.0 million or 37 percent above the FY 2022 enacted level. The PRCs
are a national network of academic research centers committed to
conducting prevention research. They are leaders in translating
research results into policy and public health practice. PRCs work
closely with community members to establish health priorities and
develop applicable research projects that address local public health
needs. These partners collaborate with health departments, educational
boards, and the private sector to form long-term relationships that
make PRCs the leaders in community based participatory research. In the
past, for every $1 the PRCs received from CDC, they were able to
generate an average of $4.85 in research funds from other sources. As a
result, PRCs are able to conduct hundreds of public health research
projects every year to address issues such as cancer, smoking, obesity,
diabetes, cardiovascular and many other conditions.
CDC Academic Preparedness Centers: $20 million, an increase $11.8
million or 144 percent above the FY 2022 enacted level. ASPPH endorses
supporting not fewer than 10 centers at institutions of higher
education, including schools of public health, and other nonprofit
private entities, to establish a network of academic preparedness
centers. The centers will coordinate preparedness and response
activities with governmental health departments, healthcare providers,
and coalitions to translate research findings into evidence-informed
and evidence-based practices, support training needs, and provide
technical assistance and expertise. This framework of a national
network of centers will strengthen the connection between academic
public health and public health departments and health care systems to
proactively address future public health threats. In previous years,
annual appropriations for this program exceeded $30 million and
supported 21 academic preparedness centers at schools of public health.
CDC Injury Control Research Centers: $15.0 million, an increase of
$6.0 million or 67 percent above the FY 2022 enacted level. The CDC's
Injury Control Research Centers (ICRCs) are on the scientific front
line conducting cutting-edge, multidisciplinary research on the causes,
outcomes, and prevention of injuries and violence. The ICRC Program
forms a national network of nine comprehensive academic research
centers, including some within schools of public health, that focus on
three core functions-research, outreach, and training. ICRC research
focuses on issues of local and national importance, including opioids,
firearm safety, sexual violence, suicide prevention, adverse childhood
experiences, and traumatic brain injury.
CDC NIOSH Education & Research Centers: $34.0 million, an increase
of $3.0 million or 10 percent above the FY 2022 enacted level. These
centers provide state-of-the-art interdisciplinary training for the
next generation of occupational safety and health practitioners and
researchers. To protect American workers, safety training must
continually evolve to keep up with technological advances,
globalization, new and emerging risks, and occupational health
disparities associated with the changing demographics of the U.S.
workforce.
CDC NIOSH Agriculture, Forestry & Fishing Centers: $30.5 million,
an increase of $3.0 million above the 2022 enacted level. The
Agriculture, Forestry, and Fishing sector has approximately 2.3 million
workers, who experience the highest fatal occupational injury rate at
21.5 deaths per 100,000 full-time workers, almost twice the rate of the
average workforce. These centers facilitate the most important research
to develop the most effective intervention strategies, and translate
those findings to achieve sustained safety improvements in workplace
practice.
Agency for Healthcare Research and Quality (AHRQ): AHRQ is the only
Federal agency that funds research at universities and other research
institutions specifically on health systems. This includes research
that takes into account the ``real-life'' patient who has complex
comorbidities, as well as intersections with other aspects of the
health care system. We support $500 million for AHRQ, an increase of
$150 million or 43 percent above the FY 2022 enacted level.
Again, ASPPH appreciates the opportunity to submit this statement
for the record and we stand ready to assist you and your staff with
additional information and resources from across our institutions.
[This statement was submitted by Timothy E. Leshan, Chief External
Relations & Advocacy Officer, Association of Schools and Programs of
Public Health.]
______
Prepared Statement of the Association of Science and Technology
Centers, the Association of Children's Museums, and the Association of
Science Museum Directors
Chair Murray, Ranking Member Blunt, and Members of the
subcommittee:
Thank you for accepting this statement submitted by the Association
of Science and Technology Centers (ASTC), the Association of Children's
Museums (ACM), and the Association of Science Museum Directors (ASMD).
We are the membership organizations for science and technology centers
and museums, for children's museums, and for science and natural
history museum leaders. Our networks of several hundred institutions in
all 50 States and in nearly 50 countries around the world traditionally
engage almost 100 million people annually in the United States. Our
members and their institutions and are increasingly serving as
community hubs for increased understanding of--and engagement with--
science and technology among all people and for serving the needs and
interests of children by providing exhibits and programs that stimulate
curiosity and motivate learning.
Our place-based organizations are leading institutions in the
efforts to promote education in science, technology, engineering, and
mathematics (STEM), developing rich, innovative, and effective science-
learning experiences. We are helping to create the future STEM
workforce and inspiring people of all ages about the wonders and the
meaning of science in their lives. Our members are trusted and valued
by their communities: a recent national public opinion poll, showed
that 95 percent of voters would approve of lawmakers who acted to
support museums and 96 percent of voters want Federal funding for
museums to be maintained or increased (Museums and Public Opinion,
Wilkening, S. and AAM, 2018).
These past 2 years have been especially challenging for our
community as all of our members, who traditionally receive about half
of their operating income from revenue of people coming through their
doors, experienced prolonged closure of their facilities. Even as they
have reopened to the public, attendance and revenue may take several
years to recover. At the same time, our member institutions continued
to serve their communities and their missions, engaging their regions
with STEM and youth engagement, supporting science learning and serving
their communities in myriad other ways. Indeed, one of the most
inspiring aspects of the past 2 years is how our member organizations
have shown up for their communities and worked closely with local
residents and organizations to advance conversation and action on the
most urgent local priorities.
For example, a year ago ASTC and ACM joined with a coalition of
other national organizations to launch Communities for Immunity
(www.communitiesforimmunity.org), an initiative supported by the
Centers for Disease Control and Prevention and the Institute of Museum
and Library Services to activate museums, libraries, and Tribal
organizations to boost vaccine confidence in their communities.
Building upon the high degree of trust that the public has in these
cultural institutions, Communities for Immunity has been able to
effectively engage vaccine hesitant members of their communities.
As the Nation hopefully emerges from the immediacy of the pandemic,
this example of action by the museum and library community demonstrates
how these trusted institutions embedded in their communities offer an
opportunity to advance community conversation and action on national
and international challenges in locally resonant ways.
astc, acm, and asmd requests for fiscal year 2023 appropriations
We appreciate the support that the subcommittee has provided for
the Nation's science and education agencies, including support for
programs of particular interest to ASTC, ACM, and ASMD.
In general, we stress the need for inclusive programs that include
support for informal education as much STEM learning--including but not
limited to school-aged youth--happens outside of formal schooling.
Research has consistently shown that learning experiences outside of
the formal classroom are vitally important to youth's future interest
and capacity in STEM (National Research Council, 2006, 2009, 2015).
National Institutes of Health
The Science Education Partnership Awards (SEPA) program builds
relationships between the biomedical research community and educational
organizations--including science centers--that improve life science
literacy. In addition, there is growing awareness of the importance of
public engagement as a core aspect of several major initiatives that
intersect with societal interests and public concerns, such as the
BRAIN Initiative and the All of Us Research Program.
We strongly urge the subcommittee to appropriate at least $21
million for the Science Education Partnership Awards (SEPA), based at
the National Institute of General Medical Sciences (NIGMS).
In addition, we would welcome language that supports incorporating
public engagement with science as an element of NIH funding programs
more widely, including especially for initiatives that have significant
public impact.
Institute of Museum and Library Services
As the primary Federal agency supporting all types of museums, the
Institute of Museum and Library Services (IMLS) provides critical
funding to museums through the Office of Museum Services (OMS)--as well
as to libraries and to Tribal and other cultural institutions. This
includes crucial resources for informal science activities at science
centers and museums throughout the country.
Throughout the pandemic, OMS has provided critical leadership to
the museum community through its CARES Act and American Rescue Plan
grants, and the agency has been providing science-based information and
recommended practices to reduce the risk of transmission of COVID-19 to
staff and visitors engaging in the delivery of museum services.
The current appropriations level has allowed OMS to fund only a
small fraction of the grant applications received that have been rated
highly by peer reviewers. Increased funding for OMS would allow the
office to increase its grant capacity for museums, funds which museums
will need to help recover from the pandemic and continue to serve their
communities.
We urge you to provide at least $54.5 million for the Office of
Museum Services at the Institute of Museum and Library Services (IMLS).
We also ask for the subcommittee to include funding for the agency
to explore establishing a roadmap to strengthen the structural support
for a museum Grants to States program administered by OMS, as
authorized by the Museum and Library Services Act, 20 U.S.C. Section
9173(a)(4), in addition to the agency's current direct grants to
museums. Unlike state library grants, IMLS does not have the ability to
rapidly deploy resources for addressing state-defined needs and expand
the reach of museums and enhance their ability to serve their
communities.
Department of Education
The U.S. Department of Education has significant opportunity to
complement its expanding support for schools and school systems--with
concurrent support for out-of-school learning include summer,
afterschool, and informal education.
The pandemic has shown how important robust afterschool and summer
learning programs are to working families and our most vulnerable
students, and how vital resources are to support these programs to
ensure they are available and effective for the children and youth who
need them.
Specifically, we request that you support an increase of $500
million for the Nita M. Lowey 21st Century Community Learning Centers
program in FY 2023, which would bring the budget to $1.789 billion.
We continue to thank the subcommittee for all its support of a
robust science and education budget. You have demonstrated your support
for crucial programs that promote STEM education for our Nation's
students. Like our organizations, you recognize these are vital
investments in our future, and we thank you in advance for taking
action accordingly.
Our two organizations--along with the broader museum community--
stand ready to be of service to your work. We are always happy to
provide examples of the ways that museums are contributing to their
communities and helping to advance local, regional, and national
priorities. With our networks of hundreds of community-based
institutions, these examples can be in or near each Congressional
district.
Founded in 1973, the Association of Science and Technology Centers
(ASTC) is a network of nearly 700 science and technology centers and
museums, and allied organizations, engaging more than 110 million
people annually across North America and in almost 50 countries. With
its members and partners, ASTC works towards a vision of increased
understanding of--and engagement with--science and technology among all
people. www.astc.org. Association of Science and Technology Centers,
818 Connecticut Avenue, NW, Seventh Floor, Washington, DC 20006,
[email protected].
The Association of Children's Museums (ACM) champions children's
museums worldwide. With more than 460 members in 50 States and 19
countries, ACM leverages the collective knowledge of children's museums
through convening, sharing, and dissemination.
www.childrensmuseums.org. Association of Children's
Museums, 2550 South Clark Street, Suite 600, Arlington, VA 22202,
[email protected].
The Association of Science Museum Directors (ASMD) is a non-profit,
professional association of natural history and science museum
directors. Our community of science museum leaders gathers to share
experiences and discuss issues related to the advancement of our
respective organizations to benefit society and the planet. www.asmd-
us.org. Association of Science Museum Directors, 2413 S. Whittier
Avenue, Springfield, IL 62704-4655, [email protected].
[This statement was submitted by Christofer Nelson, President and
CEO,
Association of Science and Technology Centers, Arthur G. Affleck, III,
Executive
Director, Association of Children's Museums, and Bonnie Styles,
Executive Director, Association of Science Museum Directors.]
______
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 FY23
appropriations for the U.S. Department of Health and Human Services
(HHS). The Association of State and Territorial Health Officials
(ASTHO) is a national nonprofit representing State and territorial
public health agencies. ASTHO's members--the chief public health
officials of these agencies--are dedicated to formulating and
influencing sound public health policy and assuring excellence in
public health practice. ASTHO is requesting $11 billion for the Centers
for Disease Control and Prevention (CDC), $824 million for the Public
Health Emergency Preparedness Cooperative Agreement (PHEP), $170
million for the Preventive Health and Health Services Block Grant
(Prevent Block Grant), $1 billion for Public Health Infrastructure and
Capacity, $153 million for Social Determinants of Health, and $250
million data modernization efforts at CDC. Under the Assistant
Secretary for Preparedness and Response (ASPR), ASTHO requests $474
million for the Hospital Preparedness Program (HPP). Additionally, we
ask for $9.2 billion in discretionary funding for the Health Resources
and Services Administration (HRSA).
Before I expand on the details of these program requests, ASTHO,
and our members are grateful for the tireless work you and your staff
do to support governmental public health. Despite heroic efforts to
protect Americans' health, we have lost one million lives and 15
million lives globally to COVID-19. These deaths weigh on us all, and
especially on those charged with protecting the health of all
Americans. While we are grateful for emergency supplemental
appropriations to address the COVID-19 pandemic, Congress must provide
long-term, sustained, and increased discretionary funding to support
the public health workforce, modernize our data systems, and build
laboratory capacity, among other priorities. We must also acknowledge
that huge sums of this emergency funding could have been avoided with
ongoing, predictable funding that meets the needs of State,
territorial, and local public health departments. The emergency
supplemental funding is narrow, specific, and time-limited. Public
health departments are anticipating that without a change, of course,
there will be an enormous funding cliff in two to 3 years. Federal
resources account for nearly half of all State and territorial health
department funding. In addition to a global pandemic, our members face
opportunities and challenges each day in their jurisdictions, including
data modernization, public health technology, public health worker
burnout, mental and behavioral health crises, and rare hepatitis cases
in children. These issues may change in urgency over the next year, but
the same health departments will be there to prepare, prevent, and
protect all Americans. ASTHO remains concerned that emergency public
health funding will not make up for decades of underfunding and the
ongoing COVID-19 response.
America's State and territorial public health departments work in
partnership with CDC toward this goal, and we respectfully request $11
billion in overall funding for this agency. CDC plays a vital role in
supporting communities to expand the capacity of our Nation's front
line of public health defense: our country's state, Tribal,
territorial, and local public health departments.
An essential program that remains vital support for public health
preparedness and response is the Public Health Emergency Preparedness
Cooperative Agreement (PHEP) at CDC. ASTHO requests $824 million for
the Public Health Emergency Preparedness Cooperative Agreement (PHEP)
to sustain and improve governmental public health programs. This
program was established after a dark day in American history: Sept. 11,
2001. Data show that PHEP has contributed to public health preparedness
in the Nation's 62 State, local, and territorial public health
departments. Also, as a result of recent increases in funding for this
program, CDC was able to provide increased funds to some city-level
grantees, allowing them to expand their public health preparedness
capabilities. Grantees rigorously evaluate their capacity to prepare
for public health emergencies.
In addition to the PHEP program, States bolster their
infrastructure activities with the Preventive Health and Health
Services Block Grant (Prevent Block Grant). ASTHO respectfully requests
$170 million for this program. For more than 30 years, the Prevent
Block Grant has served as an essential funding source for State and
territorial health agencies. In 1999, funding peaked at $194.9 million.
Since then, it has dropped by 17.9 percent, not including adjustments
for inflation. Programs funded by the Prevent Block Grant cannot be
supported or expanded through other funding mechanisms. States and
territories use these flexible dollars to offset funding gaps in
programs that address the leading causes of death and disability. In
some cases, this funding serves as seed funding for innovative projects
a State or territorial health department wishes to provide to meet
community health goals not funded through other means.
State and territorial public health departments have traditionally
operated under a boom-and-bust cycle regarding how they are funded. The
``boom'' occurs during a public health emergency, such as the COVID-19
pandemic, when policymakers increase public health funding to mobilize
a response. ASTHO is grateful for the $3 billion in emergency funding,
however, this one-time funding must be met by sustained resources in
order to make a lasting and real improvement to our Nation's public
health system. It is then followed by the ``bust,'' or return to
chronic underfunding of agencies when the acute public health threat
subsides and the crisis is deemed to be ``solved.'' ASTHO respectfully
requests $1 billion for Public Health Infrastructure and Capacity at
CDC. This funding will support efforts within agencies that build
capacity to detect and respond to threats both domestically and
globally while improving and supporting activities in core public
health capabilities, including assessment, policy, preparedness and
response, community partnership, communications, equity,
accountability, and performance management. Moreover, funding will
support agencies in their efforts to invest in a highly trained
workforce that is ready to help emerging public health threats. It is
also essential to ensure that funding is disease-agnostic, flexible,
and sustainable to support the transition from sporadic influxes of
funding that accompany the response to public health emergencies.
State and territorial health agencies are uniquely situated to
lead, develop, and coordinate interventions seeking to bring economic
and community sectors together to create conditions that foster vibrant
health. Social and economic conditions--often referred to as the Social
Determinants of Health (SDOH) (e.g., housing, employment, food
security, education, and transportation)--significantly influence
individual and community health. It is also understood that these
factors are estimated to contribute significantly to a person's health
outcomes, while traditional healthcare only accounts for 10-20 percent.
Therefore, knowing that investing in programs that address the root
causes of negative health outcomes is a force multiplier; it not only
improves Americans' health but saves the healthcare system costs and
burden. ASTHO, therefore, supports providing $153 million in funding to
support the implementation of a Social Determinants of Health program
at CDC with goals to align and streamline SDOH programs across CDC,
grow capacity to address SDOH in our communities, provide funding to
address the SDOH of those who are most at risk and disproportionately
affected by adverse social and economic conditions, and bolster the
catalog and science base and disseminate these to communities. An
increase in funding will support the expansion of activities that
address social determinants of health in State, local, Tribal, and
territorial jurisdictions that including expanding and implementing
accelerator plans and building the evidence base to better understand
health disparities.
Along with Partner Organizations, ASTHO Supports the Data:
Elemental to Health Campaign. We called on Congress to provide the
first-ever dedicated funding for public health data systems and build a
21st-century public health data superhighway. Thanks to the work of
this subcommittee, Congress answered the call and has provided annual
funding and necessary injections of supplemental funding through the
CARES Act and the American Rescue Plan for CDC's public health Data
Modernization Initiative (DMI). For FY23, we request $250 million for
data modernization efforts at CDC. DMI is committed to building a
world-class data workforce and data systems ready for the next public
health emergency. We need robust, sustained, yearly funding to complete
the foundational investment in DMI and ensure we are providing
resources for public health systems and infrastructure, including at
State and local health departments, to keep pace with evolving
technology.
Under the Assistant Secretary for Preparedness and Response (ASPR),
ASTHO is requesting $474 million for the Hospital Preparedness Program
(HPP) and the coalitions that serve their communities to operate and
coordinate activities across the local, State, regional, and Federal
levels to ready healthcare delivery systems for disasters and
emergencies. These include developing mechanisms for effective patient
movement, communicating situational awareness, and providing resource-
sharing across disparate healthcare entities. HPP allows individual
healthcare facilities and healthcare coalitions to access a truly
national response network, enabling the system to save lives and
protect Americans from 21st-century health security threats and is the
only source of Federal funding for this work.
Additionally, we request $9.2 billion in discretionary funding for
the Health Resources and Services Administration (HRSA). We sincerely
appreciate your support for HRSA and the significant increases provided
in FY22. Robust funding for HRSA is critical to supporting all HRSA's
activities and programs, which are essential to protect the health of
our communities. Additional funding will allow HRSA to fill preventive
and primary health care gaps, support urgent and long-term public
health workforce needs and build upon the achievements of HRSA's more
than 90 programs and more than 3,000 grantees.
Thank you for considering these funding requests. We stand ready to
work with Congress to address the countless public health challenges
and opportunities impacting our Nation's health. If you have any
questions or require additional information, please do not hesitate to
contact a member of ASTHO's government affairs team: Carolyn McCoy
([email protected]) or Jeffrey Ekoma ([email protected]).
[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 Centers on
Disabilities
the association of university centers on disabilities
The Association of University Centers on Disabilities (AUCD) is a
membership organization that supports and promotes a national network
of university-based interdisciplinary programs. Network members consist
of 143 centers, including 67 University Centers for Excellence in
Developmental Disabilities (UCEDD), 60 Leadership Education in
Neurodevelopmental Disabilities (LEND) programs; and 16 Eunice Kennedy
Shriver Intellectual and Developmental Disability Research Centers
(IDDRC). AUCD's mission is to advance policies and practices that
improve the health, education, social, and economic well-being of all
people with developmental and other disabilities, their families, and
their communities by supporting our members in research, education,
health, and service activities that achieve our vision. AUCD's network
of programs are located in every State and territory and are all part
of universities or university medical centers. AUCD's programs excel in
basic and applied research, training, information dissemination,
creation of model demonstration programs, systemic reform, and policy
analysis. Given that these programs work collaboratively, innovations
from one program can be rapidly implemented in communities throughout
the country. AUCD's programs serve as a bridge between the university
and the community, bringing together the resources of both to achieve
meaningful systemic change.
university centers for excellence in developmental disabilities
The University Centers for Excellence in Developmental Disabilities
(UCEDD): UCEDDs are interdisciplinary centers authorized in the
Developmental Disabilities Assistance and Bill of Rights Act of 2000
(DD Act) (Section 156 of Public Law 106-402, Subtitle D). The UCEDDs
are located in every State and territory, with some States having
multiple UCEDDs to serve the unique needs of the state. The funding
supports the basic infrastructure costs of operation for each UCEDD.
Each center leverages the investment to secure additional funding to
carry out the purpose of the DD Act. The 67 UCEDDs provide training,
technical assistance, service, research, and information sharing to
people with disabilities, their families, State and local government
agencies, and providers with a focus on building the capacity of
communities and creating improvements in the service delivery system
for people with Intellectual and Developmental Disabilities (I/DD) and
other disabilities. The UCEDDs have directly improved services and
supports in the States and territories in the areas of early
intervention, healthcare, public health, community-based services,
education, employment, housing, assistive technology, emergency
response and transportation.
leadership education in neurodevelopmental disabilities (lend) programs
The Leadership Education in Neurodevelopmental and Related
Disabilities (LEND) Programs are authorized in The Autism
Collaboration, Accountability, Research, Education and Support Act
(Autism CARES Act) (Public Law 116-60). The LEND programs are located
in 44 States, with an additional six States and three territories
reached through program partnerships, (without additional Federal or
State aid). LEND programs operate within universities and collaborate
with university hospitals and/or academic health centers to provide
advanced interdisciplinary training to enhance the clinical expertise
and leadership skills of professionals in a broad array of professional
disciplines in the identification, assessment, and intervention of
children and youth with neurodevelopmental and other related
disabilities. The training programs have an explicit focus on training
professionals to provide culturally and linguistically relevant care
and to recruit diverse students and professionals into the programs. In
FY 2020, 24 percent of long-term trainees in the LEND programs were
from underrepresented racial groups and 13 percent were Hispanic or
Latino. LEND programs also include self-advocates and family members as
trainees and faculty to ensure trainees interact with people with lived
experiences and to increase the leadership skills of self-advocates and
family members as part of an interdisciplinary care team. The LEND
programs have pivoted in response to the COVID-19 emergency. Critical
clinical services have transitioned to a mix of telehealth and in-
person formats, providing access to assessment, support, and treatment.
A real-time transition to the provision of training either remotely or
in a hybrid model proved an added benefit of building maternal and
child health leaders with experience in telehealth to support the
population of people with neurodevelopmental disabilities.
eunice kennedy shriver intellectual and developmental disability
research centers (iddrc)
The Intellectual and Developmental Disabilities Research Centers
(IDDRCs) were established in 1963. The IDDRC's represent the Nation's
first and foremost sustained effort to prevent and treat disabilities
through biomedical and behavioral research. The network of IDDRCs with
AUCD membership consists of 16 Centers with current P30 core grant
funding from the Eunice Kennedy Shriver National Institute for Child
Health and Human Development (NICHD). Each IDDRC supports 40-100
research projects on an annual basis that seek to advance the
understanding of chromosomal conditions and biochemical processes as
they relate to brain function and I/DD. IDDRCs contribute to the
development and implementation of evidence-based practices by
evaluating the effectiveness of biological, biochemical, and behavioral
interventions; developing assistive technologies; and advancing
prenatal diagnosis and newborn screening. They also provide invaluable
research training, mentoring, and support to emerging leaders in
clinical and research science.
fiscal year 2023 appropriations requests and justification
AUCD requests that Congress appropriate $47,173 million for the
UCEDDs for FY 2023 within the Administration for Community Living (ACL)
in the Labor-HHS-Education appropriations bill. The increased funding
will ensure the UCEDDs meet the requirements of the DD Act and that
people with disabilities are fully included and accounted for as States
and territories respond to the significantly increased demand for
assistance due to the pandemic. In FY 2020, the UCEDDs reached 13
million people through community training and technical assistance
activities and trained 6,242 professionals that work with people with
disabilities. In FY 2021, the number of requests for technical
assistance to UCEDDs increased by 44 percent and the number of
technical assistance products developed for the UCEDDs increased by 83
percent. These increases are a direct result of the impact of the
pandemic on the systems supporting people with disabilities and are not
sustainable without additional assistance. As regulatory and service
systems continue to evolve once the public health emergency expires,
the support needs of people with I/DD and their families will not
decline. In addition, the increased funding will enable the UCEDDs to
fund a new round of competitive grants focused on increasing diversity,
equity and inclusion by partnering with minority-serving institutions
and will also support other UCEDD activities and programs to promote
opportunities for people with I/DD to exercise self-determination, be
independent, and be included in all aspects of community life.
AUCD requests that Congress appropriate $57,344,000 for Autism and
other Developmental Disabilities for FY 2023 and of this amount
appropriate $40,000,000 for LENDs (in report language) within Health
Resources and Services Administration (HRSA) in the Labor-HHS-Education
appropriations bill. The increased funding will ensure the LEND
programs can address the significant unmet needs and disparities in
evaluation, diagnosis, and treatment as well as supporting LENDs to
recruit and support more autistic adults as faculty advocates and as
trainees, with an emphasis on expanding LEND curriculum to include and
address adult life needs and healthcare. Furthermore, while we are
grateful the number of LEND programs were expanded from 52 to 60 in
June of 2021, this was done with no increase in funding. All funded
programs were subject to a 3.3 percent cut in their allocated funds to
accommodate the expansion. We are hopeful the LEND programs will see
their funding restored in FY 2023.
AUCD requests that Congress appropriate $1.816 billion for the
NICHD within the National Institutes of Health (NIH) (a 7.9 percent
increase from FY 2021). AUCD additionally requests a proportional
increase of 7.9 percent for IDDRCs within the NICHD in the Labor-HHS-
Education appropriations bill.
The increased funding for NICHD is essential to building upon the
cutting-edge research and collaboration of the IDDRC network to better
understand the neural and biomolecular underpinnings of I/DD to better
inform treatments and interventions. Previous increases in NICHD
funding have not resulted in increases to the IDDRCs. This research is
more important given the reality that people with I/DD are experiencing
more severe symptoms of COVID-19 and die at disproportionately higher
rates than people without disabilities.
other programs that support and serve children and adults with
disabilities
AUCD supports the proposed increases in the President's budget for
programs that support and serve people with disabilities, such as
special education, post-secondary education, and vocational
rehabilitation programs; programs that improve the health of children
and adults with disabilities; and programs that generate new knowledge
and promote its effective use to strengthen opportunities for an
inclusive life in the community. We are specifically supportive of the
President's proposed increases for the following programs:
--Transition Programs for Students with Intellectual Disabilities
(TPSID) and related technical assistance centers (NCC and
NDTAC) to promote college programs for students with
intellectual disabilities;
--Projects of National Significance (PNS), innovative demonstration
projects to monitor progress on key policy priorities for
people with I/DD;
--The National Institute on Disability Independent Living and
Rehabilitation Research (NIDILRR), the Federal Government's
primary disability research organization, which funds programs
that generate new knowledge and promote its effective use to
strengthen individual and community capacity for inclusion; and
--The National Center on Birth Defects and Developmental Disabilities
(NCBDDD) strives to advance the health and well-being of people
with disabilities by preventing birth defects, promoting better
understanding of developmental disabilities, and improving the
health of people with disabilities.
AUCD and AUCD's member centers frequently secure grants from these
programs. For example, the PNS fund three national long-term data
collection projects that help policymakers, service providers, and
people with I/DD and their families to make the most informed policy
and individual decisions related to healthcare and employment. All
three of the National longitudinal studies are conducted by AUCD's
members. The studies include a study of the evolution of integration
and inclusion of people ID/DD in society and more than 20 years of
studies about community integration and employment for people with I/
DD.
______
Prepared Statement of the Association of University Programs in
Occupational Health and Safety
On behalf of the Association of University Programs in Occupational
Health and Safety (AUPOHS), we respectfully request that the Fiscal
Year 2023 Labor, Health, and Human Services Appropriations bill include
no less than $375,300,000 for the National Institute for Occupational
Safety and Health (NIOSH), including no less than $34,000,000 for the
Education and Research Centers (ERCs), $30,500,000 for the Agriculture,
Forestry, and Fishing (AgFF) Program, and a $3,000,000 increase over
the FY22 level for the Total Worker Health(r) (TWH) Program.
As you have no doubt heard from other testimonies, far too many
Americans still lose their lives on the job. In 2020, a worker died
every 111 minutes from injuries they got on the job (BLS 2020). This
includes our first responders, who can be struck and killed by drivers
while helping victims of a roadside traffic accident; our construction
workers, who may fall from an inadequately guarded roof edge; our
farmers who may be engulfed in flowing grain, and our shop owners and
employees who may be asked to work late nights without proper security
and become victims of violence. Although it is harder to measure, we
also estimate that an additional 145 people die every day in America
from work-related disease--developing cancers from hazardous chemicals
that they encounter at work, or heart disease from chronically
stressful work environments. In addition to work-related deaths, we
also have a high burden of nonfatal workplace injury and illness.
Leading up to the pandemic, 2.8 million workers were seriously injured
on the job every year and one-third of those injured workers required
time off to recover before they could return to work. This not only
costs the Nation's businesses more than $1.1 billion a week on serious,
nonfatal workplace injuries (Liberty Mutual 2020) but also causes great
harm to workers and their families if their workers' compensation
systems fail to provide adequate care or wage replacement.
The pandemic has amplified all these issues for the American
workforce. More than 3,600 of our health care workers died from COVID-
19 in the first year of the pandemic, and we know that many of these
deaths are attributable to the extreme shortage of protective gear
encountered in medical settings (Lost on the Frontline 2021). That is
to say, these deaths were preventable. In just the first months of the
pandemic, 16,233 workers in meat and poultry processing facilities were
infected with COVID-19 (CDC 2020); these were also workers who
sacrificed their health and wellbeing in order to keep essential goods
and services moving. We owe an immense debt to all of our essential
workers, and as such, we have an opportunity to better serve these
workers moving forward. By designing safer workplaces that reduce the
risk of exposure to future variants, answering workers' questions about
vaccines and making them accessible, and by researching, designing, and
preparing programs to bolster workers' mental health as we come to
terms with what we have experienced these past few years, we can serve
our essential workers.
NIOSH is the primary Federal agency responsible for conducting
research that leads to actions and policies that prevent work-related
illness and injury by promoting safe work practices and work
environments as well as worker health and wellbeing. NIOSH is also the
Federal agency 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 viruses. During the pandemic, NIOSH
accelerated the approval process for establishing the safety and
quality of new masks and other PPE. NIOSH continues to fund and promote
critical research for a changing workforce and work practices, an
important service for employers and employees in the face of the
current pandemic and other disasters. NIOSH has, for example, deployed
teams across the country in response to industry requests for
assistance, including more than 15 meatpacking plants that experienced
outbreaks. NIOSH has contributed key leadership and expertise,
providing Federal guidance and decision tools for industries including
construction, manufacturing, food and agriculture, mass transit,
transportation and trucking, restaurants and bars, childcare
facilities, schools, among others, including recent guidance for
businesses to safely return to work and/or expand operations.
The NIOSH-supported extramural Centers, including the Education and
Research Centers (ERCs), Centers in the Agriculture, Forestry, and
Fishing (AgFF) Program, and the Total Worker Health(r) (TWH) Centers of
Excellence, have responded rigorously to the pandemic and supported
NIOSH to rapidly respond to the needs and safety of the Nation's
workforce. These Centers have been proactive in providing resources,
employer assistance, over 100,000 hours of outreach training, and
research that are helping to drive improvements in our rapid response
to emerging occupational safety and health issues. The work the Centers
have undertaken during this pandemic underscores the need for increased
funding for NIOSH and the Centers. As workplaces rapidly evolve,
changes continue to present new health and safety risks to workers,
which need to be addressed promptly through occupational health and
safety research and training.
The eighteen university based ERCs provide local, regional, and
national resources for all those in need of occupational health and
safety assistance. Collectively, the ERCs provide graduate- and post-
graduate level education and research training in the occupational
health and safety disciplines. The ERCs prepare a workforce of
occupational safety and health professionals to every Federal Region in
the U.S. who are trained to identify and mitigate vulnerabilities from
all sources, including increased readiness to respond to chemical,
biological, radiological, or nuclear attacks. Occupational health and
safety professionals work with emergency response teams to minimize
disaster losses, as exemplified by their lead role in minimizing
hazards among workers involved in clean-up and restoration 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
ERCs responded rapidly to provide employers across the country with
accessible, concise information on the workplace implications of COVID-
19 and are now providing local and national online and telephonic
advising programs for businesses as they seek to reopen safely.
NIOSH leads the research and outreach efforts on the Nation's most
dangerous worksites that often impact lives in rural parts of America.
The NIOSH AgFF Program was established by Congress in 1990 (P.L. 101-
517) in response to evidence that agricultural, forestry, and fishing
workers suffer substantially higher rates of occupational injury and
illness than other workers. Agricultural workers are more than six
times more likely to die on the job than workers in other sectors
combined, averaging 566 fatalities per year, and nearly 5 in 100
agricultural workers incur recordable nonfatal injuries each year. Our
food security depends on a healthy agricultural workforce--an essential
sector that has been hit particularly hard during the pandemic. Today,
the NIOSH AgFF initiative includes 10 regional Agricultural Centers and
one national Children's Farm Safety and Health Center. The AgFF program
is the only substantive Federal effort to ensure safe working
conditions in this vital production sector. The program also conducts
research and outreach to ensure the safety of our Nation's 86,000
workers in forestry and logging, an industry with a fatality rate more
than 30 times higher than that of all our Nation's workers. The AgFF
Centers have had a significant impact on protecting safety and health
of agricultural workers. For example, increased use of rollover
protective structures (ROPS or roll bars) and seatbelts on tractors has
reduced overturn-related deaths. Partnering with fishing communities,
the AgFF Centers developed comfortable lifejackets to wear at work,
which have increased chances of survival in the event of a fall
overboard. The lifesaving, cost-effective work of the AgFF program is
not replicated by any other agency. USDA's National Institute of Food
and Agriculture interacts with experts at NIOSH to learn about cutting-
edge research and new directions in this area. As the majority of AgFF
workers; self-employed farmers, ranchers, and fishermen; are exempt
from State and Federal OSHA protections, NIOSH and the AgFF Centers
fill a critical role in training and educating of AgFF workers.
NIOSH also supports 10 Total Worker Health (TWH) Centers of
Excellence that conduct multidisciplinary research and test practical
solutions to emerging challenges that impact the safety, health,
wellbeing, and productivity of the American workforce. The TWH Centers
conduct solutions-focused research in partnership with employers and
employees and partner with government, business, labor, and community
to improve the health and productivity of the workforce. 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. These Centers have been heavily
relied upon by employers and employees to address the impact of the
current pandemic not only from an infectious disease perspective but
also to address the impact on mental health, stress, burnout, and
resiliency of essential workers, workers abruptly working remotely, and
those furloughed or laid off. The TWH Centers are an investment in the
American economy, helping valued employees return home safe and healthy
at the end of a productive workday.
While funding for the ERC, AgFF, and TWH Centers is crucially
important to maintain resources, staff, and long-term capacity in
occupational safety and health research at the State and regional
level, we also emphasize that the overall NIOSH funding level is also
critical. The requested increase in the NIOSH topline funding level
supports NIOSH intramural research, including the NIOSH personal
protective equipment program, which develops and monitors N95s and
advanced respiratory protection systems; disaster response research;
mental health research; Per- and Polyfluoroalkyl Substance (PFAS)
research; and research on substance use disorders related to work.
Increased NIOSH topline funding also enables reinstating reduced
extramural funding levels for innovative investigator-initiated awards.
We urge you to recognize the critical contribution of NIOSH,
including the ERCs, the AgFF Program, and the TWH Program to the health
and productivity of our Nation's workforce. Thank you for the
opportunity to submit testimony.
______
Prepared Statement of Autism Speaks
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 2023 we request
that the Committee increase its investment in autism-related
activities. Specifically, we request that you fund autism activities at
least at $33.1 million at CDC and $64.6 million for Autism and
Developmental Disorders activities (which includes a $7.5 million
increase in research funding and a $2.755 million increase for the
Leadership Education in Neurodevelopmental and Related Disabilities
(LEND) program) at HRSA. In addition, we request that the Committee
strongly urge the NIH to invest in autism research consistent with the
budget recommendation included in the Interagency Autism Coordinating
Committee's (IACC) Strategic Plan and for all agencies to invest in
research that addresses health equity challenges and disparities that
persist in the autism community.
My name is Stuart Spielman, and I am the Senior Vice President for
Advocacy at 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.
For Fiscal Year 2023 we request that the Committee invests in
autism-related activities to align the Federal investment in autism-
related activities with the budget recommendation of the 2016-2017 IACC
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 recommendations
and strategic objectives of the IACC, the congressionally created body
responsible for advising the Federal Government on autism-related
investments, to guide investment across all agencies.
Much of the progress in autism research that has been made is due
to your work and support. The research you have supported has been
remarkably important in better understanding the biology of autism, the
numbers of individuals across the country with an autism spectrum
disorder diagnosis, and the types of interventions and supports that
can benefit the autism community. 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 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?
--Research indicates that autistic individuals, women in particular,
are at greater risk for suicide. How can we adapt existing
suicide screening and intervention models to better reach
individuals at risk?
--Learning opportunities were lost during the pandemic. How can we
ensure that educational loss during breaks in education are
better understood and addressed for children, teenagers, and
young adults with autism?
--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?
--How does autism affect aging and related health conditions and how
can we ensure that autistic adults are receiving appropriate
mental health assessments as they age?
Recent research has shown that while we have made progress in
identifying all children with autism earlier, timely access to needed
services remains a major challenge. Children with autism spectrum
disorder have nearly 4 times higher odds of unmet health care needs
compared to children without disabilities, and Black autistic children
are twice as likely to have unmet healthcare needs than their non-
Hispanic white counterparts. Black and Latinx children experience
delays in diagnosis that result in the loss of valuable treatment time.
It is imperative that a greater investment in research is made to help
bridge these gaps and ensure that culturally competent interventions
and services are available in every community.
The scale of the challenges faced by our community require urgent,
increased, and sustained investment. The IACC 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.'' The
total annual cost of autism in the United States has been estimated to
be at least $236 billion. By contrast, it has been estimated that
combined autism research funding among Federal and private sources is
less than 1 percent of that amount--a tiny fraction of the estimated
annual total cost of autism. Additional research investments can
improve outcomes and help reduce those costs through early
identification, improved interventions, and greater availability of
supports and services.
Because of the Committee's previous work and the decisions made by
the agencies funded through this bill, there are opportunities to build
on existing investments. For example:
--The National Institute on Deafness and Other Communication
Disorders (NIDCD) FY 2022 Budget Justification highlighted
research to help address communication challenges for autistic
individuals. They note that 30 percent of autistic individuals
over age 5 are functionally non-speaking yet are an under-
represented group in research. Research the NIDCD is funding is
intended to develop effective interventions and improve
clinical practice for autistic individuals with communications
challenges.
--The CDC receives only enough funding to monitor the prevalence of
children with autism spectrum disorder in 11 States. Providing
an overall funding level of at least $33.1 million in fiscal
Year2023 would allow more States to participate in the ADDM
Network, giving them invaluable information to drive efforts at
the State and local levels and providing a better national
dataset; allow for more study of the prevalence of autism
across the lifespan; and continue support and enhancement of
the ``Learn the Signs. Act Early'' program on child
development.
--HRSA has been funding extraordinarily important research efforts to
help address significant issues, like developing clinical
medical standards and challenges related to the transition to
adulthood. An overall funding level of $64.6 million for Autism
and Developmental Disorders in FY23 (to include an increase of
$7.5 million in research and a $2.755 million increase for
LEND) would greatly enhance HRSA's ability to fund research to
help bridge the gaps in these and myriad other areas.
We hear every day from individuals and families in the autism
community about their successes, challenges, and everything in between.
They have shared their experiences during the pandemic, telling us
about their struggles to receive learning supports and meet basic needs
like food and housing. An analysis of private health insurance claims
data has shown that a greater percentage of people with autism, alone
or with intellectual or developmental disability, died from COVID-19
than people with no chronic conditions. The damage done by the pandemic
makes the need for a greater investment in the community even more
compelling. The research that you have funded has brought a range of
lasting changes and significant improvements. We are at a pivotal
moment. Now is the time to address the significant gaps we know persist
so that every person on the spectrum can achieve their full potential.
[This statement was submitted by Stuart Spielman, Senior Vice
President,
Advocacy, Autism Speaks.]
______
Prepared Statement of the Big Cities Health Coalition
On behalf of the Big Cities Health Coalition (BCHC), we
respectfully request that the subcommittee provide the highest possible
funding for the U.S. Centers for Disease Control and Prevention (CDC),
central to protecting the public's health, for Fiscal Year 2023. Our
key CDC programmatic priorities include those most critical to our
members: immunization, epidemiology and laboratory capacity, public
health data modernization, workforce, infrastructure and capacity,
opioid overdose prevention, violence prevention, public health
preparedness, and addressing the social determinants of health.
BCHC is comprised of health officials leading 35 of the Nation's
largest metropolitan health departments, who together serve more than
61 million--or about one in five--Americans. Our members work every day
to protect and promote the public's health. We thank you for your
continued leadership and support for our Nation's public health
workforce and systems.
As the subcommittee members recognize, sustained annual funding is
necessary to build public health capacity for the next pandemic, as
well as the everyday work that helps keep communities as healthy and
safe as possible.
national center for immunization and respiratory diseases
National Immunization Program
We respectfully request $1.1 billion in FY 2023 for the National
Immunization Program. The CDC Immunization Program funds 50 States, six
large, BCHC member cities, and eight territories for vaccine purchase
and immunization program operations. Increased and sustained investment
is needed to modernize immunization information systems (IIS),
establish State-to-state IIS data sharing, increase and sustain a
network of adult immunization providers reporting data into IIS, and
engage with communities to build vaccine confidence and minimize
disparities among people of color and those at heightened risk for
acute outcomes from vaccine-preventable diseases. BCHC also supports
the creation of a Vaccines for Adults program that is essential to
reduce vaccination coverage disparities, improve outbreak control, and
enhance and maintain the infrastructure needed for responding to future
pandemics, as well as routine, annual infectious disease.
national center for emerging and zoonotic infectious disease
Epidemiology and Lab Capacity
We respectfully request $800 million in FY 2023 for the
Epidemiology and Lab Capacity (ELC) program, which is a single vehicle
for multiple programmatic initiatives that go to 50 State health
departments, six large, BCHC member cities, Puerto Rico, and the
Republic of Palau. ELC provides critical support to and for
epidemiologists and laboratory scientists who are instrumental in
discovering and responding to various food, water, and vector-borne
outbreaks, as well as funding vital improvements in health informatics.
Despite ELC's vital role in responding to the pandemic, annual funding
levels are not adequate to maintain public health preparedness or
address routine challenges, particularly at the city or county level.
An increase to ELC would enable increased support to local health
departments to provide for their jurisdiction-specific needs, which
should be sent directly to large, urban jurisdictions directly,
wherever and whenever possible. Further, ELC dollars sent to the States
should be better tracked through CDC reporting structures and shared
publicly to contribute to Agency transparency and ensure funds are in
fact supporting big city epidemiology activities.
public health scientific services
Public Health Data Modernization Initiative (DMI)
We respectfully request $250 million in FY 2023 for the DMI that is
working to create modern, interoperable, and real-time public health
data and surveillance systems at the State, local, Tribal, and
territorial levels. These efforts will ensure our public health
officials on the ground are prepared to address any emerging threat to
public health-whether it be COVID-19, measles, a foodborne outbreak
like E. coli, or another crisis. COVID-19 exposed the gaps in our
public health data systems and since then Congress has provided funding
for DMI through the CARES Act and American Rescue Plan Act. These
investments have been critical, but the public health surveillance
systems must live beyond COVID-19 and be ready for any and all future
threats. This requires long-term, sustained investment that is not just
to build capacity at the Federal and State level, but also at health
departments in cities and counties across the country. Access to
timely, accurate data at all jurisdictional levels is perhaps our most
enduring public health challenge.
Public Health Workforce
We respectfully request $106 million in FY 2023 for CDC's public
health workforce and career development programs, the same as the
President's budget request. The public health workforce is the backbone
of our Nation's governmental public health system at the county, city,
state, and Tribal levels. Investments must be made to build back and
develop the next generation of the public health workforce, as well as
attract and retain diverse candidates with varied skill sets. These
funds support CDC's fellowship and training programs including the
Public Health Associate Program and the Epidemic Intelligence Service
that extend the capacity of health departments and key partners at all
levels of government.
cross-cutting activities and program support
Public Health Infrastructure and Capacity
We respectfully request $1 billion in FY 2023 for a public health
infrastructure and capacity investment. The pandemic exposed the deadly
consequences of chronic underfunding of basic public health capacity.
Because public health is largely funded by disease or condition, there
has been little investment in cross-cutting capabilities that are
critical for effective prevention and response infrastructure, such as
equity; policy development and support; communications; community
partnership and engagement; organizational competencies; transparency
and accountability; and emergency preparedness and response.
Governmental public health infrastructure requires sustained
investments over time, and we believe this is an important start.
Building a response in real time, such as during the COVID-19 pandemic,
is not the way to best protect our Nation's health. BCHC is grateful
for the inclusion of funding in the FY 2022 Omnibus package and urge an
ongoing investment to ensure that our governmental public health system
is prepared not just for the next pandemic, but also to strengthen the
health of our communities every day.
Center for Forecasting Epidemics and Outbreak Analytics
We respectfully request $50 million in FY 2023 for the Forecasting
Center that was established with American Rescue Plan Act funding to
facilitate the use of data, modeling, and analytics to improve pandemic
preparedness and response. This is the same as the President's budget
request. Local health departments do not have sufficient capacity to do
such activities on their own and would greatly benefit from the
information and tools developed by the Forecasting Center. Therefore,
sustained funding is required to maintain the center's functionality
over time. Such resources could be critical to other public health
crises such as the dueling community epidemics of violence and opioid
overdose.
national center for injury prevention and control
Opioid Overdose Prevention and Surveillance
We respectfully request $713 million in FY 2022 for Opioid Overdose
Prevention and Surveillance in line with the President's request.
Overdoses are increasing in almost all of our Nation's communities,
erasing gains of recent years. CDC's funding to health departments
through the Overdose Data to Action (OD2A) program has been a critical
resource for prevention of opioid and polysubstance use but must be
expanded to include more big cities to ensure that substance use
prevention continues to stem the tide of overdose and death. Funded
prevention efforts include harm reduction and linkage to care
initiatives with a focus on health equity and reducing stigma. Local
health departments also need to be able to use these funds to purchase
Naloxone; SAMHSA-funded purchasing is insufficient in supporting
distribution. There is no one Federal funding stream that supports
Naloxone purchase at the local level. Finally, we also encourage the
committee to include directive language to ensure these dollars reach
the local level in those communities that are not directly funded, as
well as have CDC and HHS better track and report publicly state
expenditures.
Gun Violence Prevention Research
We respectfully request $35 million in FY 2023 for Gun Violence
Prevention Research and the same as the President's budget request.
Firearm violence is a serious public health problem in the United
States that impacts the health and safety of all Americans and
continues to be an acute issue in our Nation's largest cities.
Significant gaps remain in our knowledge about the problem and ways to
best prevent it; we need to continue and expand the research.
Addressing these gaps is an important step toward keeping individuals,
families, schools, and communities safe from firearm violence and its
deadly consequences. The public health approach to violence prevention
includes working to define the problem, identifying risk and protective
factors, developing and testing prevention strategies, and then,
assuring widespread adoption of targeted programs. Additional funds in
FY 2023 would be used to fund a new grant program to implement a menu
of evidence-based, evidence-informed, and emerging strategies to
prevent firearm-related injuries and deaths in high-risk urban and
rural communities.
Community Based Violence Intervention Initiative
We respectfully request $250 million in FY 2023 for a Community
Violence Intervention initiative as proposed in the President's budget
request to implement evidence-based community violence interventions
locally. BCHC whole-heartedly supports such an investment and believes
it is critically important to have both funds at, and engagement of,
the CDC's National Center for Injury Prevention, to complement efforts
funded through the Department of Justice. Violence, like many public
health challenges, is preventable. Yet, the majority of public
investments are used to address the aftermath of violence, too often
through systems that can cause further harm. By making investments in
public health strategies within communities that are most impacted by
violence, cities can work across sectors to shift from an overreliance
on the criminal justice system and move from reimagining to realizing
community safety.
center for preparedness and response
Public Health Emergency Preparedness Cooperative Agreements
We respectfully request $1 billion in FY 2023 for the public health
emergency preparedness (PHEP) grant program. PHEP provides funding to
strengthen local and State public health departments' capacity and
capability to effectively respond to public health emergencies,
including terrorist threats, infectious disease outbreaks, natural
disasters, and biological, chemical, nuclear, and radiological
emergencies. PHEP funding has been cut by over 30 percent in the last
decade. Recent events, such as the response to the COVID-19 pandemic,
demonstrate the need to invest in these programs to rebuild and bolster
our country's public health preparedness and response capabilities.
America's public health preparedness systems are stretched to the brink
and will need increased, predictable base funding for years to rebuild
and improve. We also encourage the committee to include directive
language to ensure these dollars reach the local level in those
communities that are not directly funded, as well as have CDC better
track and share publicly state expenditures.
national center for chronic disease prevention and health promotion
Social Determinants of Health
We respectfully request $153 million in FY 2023 for the Social
Determinants of Health (SDOH) program in line with the President's
request. CDC's SDOH program was initially funded in FY 2021 to
coordinate CDC's activities and to begin to provide tools and resources
to public health departments, academic institutions, and nonprofit
organizations to address the social determinants of health in their
communities. Local and State health and community agencies lack funding
and tools to support these cross-sector efforts and are limited in
doing so by disease-specific Federal funding. Given appropriate funding
and technical assistance, more communities could engage in
opportunities to address social determinants of health and preventable
inequities in health outcomes. Contact: Chrissie Juliano, MPP,
Executive Director, Big Cities Health Coalition.
______
Prepared Statement of the Bipartisan Policy Center
BPC is dedicated to finding bipartisan solutions to improve child
care for children, families, educators, providers, and the broader
economy. We know high-quality child care builds a strong foundation for
young children and fundamentally supports the growth of their cognitive
and social emotional development. There are more than 19 million
children, or 27 percent of the U.S. population, under age 5 living in
U.S. households and it is essential to both child development and a
strong economic recovery that Congress ensure each of these children
have access to high-quality child care.\1\ In order to achieve this, we
urge the subcommittee to address critical areas of need in the fiscal
year (FY) 2023 Labor, Health and Human Service, Education and Related
Agencies appropriations bill.
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\1\ Child population by age group in the United States | KIDS COUNT
Data Center.
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This testimony addresses two high-priority issues crucial to stable
and thriving high-quality child care in our country. First is that the
cost of care, which often exceeds what many parents can afford,
freezing families out of the market without any high-quality care
options to the most vulnerable populations. Second, the Nation is
facing a shortage of safe and healthy child care facilities. While
investments in facilities are critical, they are often not feasible for
providers who are operating within a broken system and razor-thin
profit margins. Consequently, providers do not have the capital to fund
investments that prioritize the facility-related repairs, upgrades,
renovations, and maintenance that meet modern safety and professional
standards. Without the support of Congress, child care businesses will
be unable to provide the necessary investment in facilities and
parents, especially those in rural areas, will be denied access to the
care they need. BPC believes it is essential to address both needs
concurrently or the demand on child care will be overwhelmed by the
lack of supply. For these reasons, BPC urges the subcommittee to double
the discretionary funding for the Child Care Development Block Grant
program (CCDBG), increase the Preschool Development Grant program (PDG)
to $450 million, and provide $5 billion in dedicated funding to
retrofit existing, and build new, child care facilities for FY 2023.
economic impact of child care
As this subcommittee considers the FY23 allocations for child care
programming, BPC urges it's members to weigh the impact lack of access
to child care has on the Nation's post-pandemic economic recovery
versus the costs of Federal support for increasing said access. While
fundamental to the development of young children, access to child care
as the Nation transitions away from remote work flexibilities can
either serve as a barrier or present opportunities for employment. A
BPC parent poll found 66 percent of parents said finding child care
impacts the number of hours they can work, 50 percent said it affects
whether they can search for a job, and 68 percent said it impacts
whether they can stay in the workforce.\2\ In BPC's 2021 report ``Child
Care in 35 States: What we know and don't know'' found that over 3.4
million children (31.2 percent) with all available parents in the work
force do not have access to a formal child care slot.\3\ The gap was
higher in rural areas of the country and among women demonstrated by
the fact that 1.3 million fewer mothers were employed in September 2021
compared to before the pandemic began.\4\ Our survey data shows the gap
is highest among women with children under two. If the child care gap
is not addressed, based on lost income to parents, businesses, and
taxpayers, BPC estimates an economic loss across 35 States over the
next 10-years to be between $142.51 and $217.02 billion.\5\ This
estimation is not adjusted for inflation and could be more severe.
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\2\ https://bipartisanpolicy.org/blog/child-care-poll/.
\3\ https://bipartisanpolicy.org/report/child-care-gap/.
\4\ https://www.washingtonpost.com/politics/2021/11/08/why-havent-
us-mothers-returned-work-child-care-infrastructure-they-need-is-still-
missing/.
\5\ https://bipartisanpolicy.org/download/?file=/wp-content/
uploads/2021/11/BPC-Economic-Impact-Report_R01-1.pdf.
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ccdbg and pdg
Increases for both CCDBG and PDG would provide added stability and
capacity to serve a greater number of qualifying families in need
through high-quality care. Not adjusted for inflation, if Congress were
to double the discretionary funding for CCDBG, BPC estimates that the
U.S. Department of Health and Human Services (HHS) will likely be able
to double the number of eligible children served. In addition to a
greater investment for CCDBG, the increased funding for PDG will allow
HHS to expand funding for the 28 States, Puerto Rico, and Guam which
currently receive grants, as well as provide funding for almost all
remaining States not currently funded.
BPC also urges Congress to authorize HHS and the Department of
Education to allow Large Tribes to apply for PDG funding. Large Tribes,
including the Muscogee Creek Nation of Oklahoma, are responsible for
overseeing access to and delivery of early learning programming for as
many as 53,354 children aged 0-4 years--a number greater than some
States--yet are still not eligible for PDG support. Moreover, a 2018
report published by the Office of the Administration for Children and
Families (ACF) found nearly one-third of American Indian and Alaska
Native (AI/AN) young children live in households at or below the
Federal poverty line.\6\ Additionally, only one-fifth of AI/AN young
children were reported to have access to and attended an early care and
learning program within a three-month period. BPC believes it is
critical Congress address its systemic underfunding for AI/AN
populations which begins with ensuring Large Tribes have equitable
access to PDG funding.
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\6\ https://www.acf.hhs.gov/sites/default/files/documents/opre/
14005_acf_opre_aian_ec_needs_brochure_v7_072418_508b.pdf.
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child care facilities
Approximately 129,000 center-based child care programs serve nearly
7 million children in the United States, and 1 million in-home
providers care for 2.7 million children.\7\ It is imperative that the
physical spaces where kids learn, play, and grow contribute to their
cognitive development and social, emotional, and physical well-being.
However, many children might not have access to services that promote
early learning. Instead, young children may be exposed to health and
safety issues including lead, mold, dust, or other environmental
pollutants that could cause long-term health developmental
consequences.
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\7\ National Survey of Early Care and Education of 2012 (NSECE
2012) | The Administration for Children and Families (hhs.gov).
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As of 2018, the Environmental Protection Agency (EPA) reported that
approximately 500,000 child care facilities are not regulated for lead
in drinking water.\8\ Additionally, an investigation by HHS Office of
the Inspector General found that across 10 States, 96 percent of child
care centers inspected during unannounced visits had one or more
potentially hazardous conditions and noncompliance with health and
safety requirements.\9\ This is made worse because young children have
frequent hand-to-mouth activity, meaning that potentially toxic or
harmful substances within the facility have a high likelihood of being
ingested. Other safety hazards include easily accessible electrical
outlets, lead paint, unsafe play equipment, and open windows and
gates.\10\
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\8\ 3Ts for Reducing Lead in Drinking Water | US EPA.
\9\ https://oig.hhs.gov/oei/reports/oei-03-16-00150.pdf.
\10\ CIFBldgInfrastructureReport.pdf (cedac.org).
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Due to razor-thin profit margins and a broken system where child
care services have historically been undervalued, most providers do not
have the ability to upgrade facilities and provide a competitive wage
and increase access to meet the National need. Absent the necessary
fiscal supports, providers will be unable to make facility-related
repairs, upgrades, and renovations to meet safety standards. This lack
of capital is compounded by the fact that more than 90 percent of child
care businesses are women-owned and over half of the industry in
minority-owned.\11\ This lack of access to capital is further
exacerbated by gender- and race-based discriminatory small business
lending practices and results in parents left with no other options
other than to place their children in a potentially dangerous setting.
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\11\ https://cdn.advocacy.sba.gov/wp-content/uploads/2016/09/
07141514/Minority-Owned-Businesses-in-the-US.pdf.
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BPC estimates a total of $25 billion over a 5-year period is needed
to address critical facilities needs. Beginning with $5 billion for FY
2023, an estimated $14 billion of the $25 billion is needed to renovate
existing facilities across the country to bring them up to professional
standards with the remaining $11 billion contributing to increasing the
supply of new facilities. This will result in 12,600 new center- and
home-based child care facilities, an additional 656,000 additional
child care slots, and has the potential to reduce the number of
children without access to care by 12 percent.
Increasing child care funding in FY 2023 is vital to the economic
and social fabric of our Nation. After 2 years of living through
endless challenges, unprecedented barriers to delivery of care, and
exacerbated by the COVID-19 pandemic, the Nation recognizes the value
of child care and the important role Congress plays in supporting
families. Congress must provide a stable foundation for the child care
system which is a pillar of a strong national recovery. We appreciate
the subcommittee's bipartisan leadership and dedication to child care
over the past 2 years and look forward to working together to improve
our systems in order to better serve children and families.
______
Prepared Statement of Blue Mountain Heart to Heart
Chairwoman Murray, Ranking Member Blunt, and members of the
subcommittee, my name is Everett Maroon and I serve as the Executive
Director of Blue Mountain Heart to Heart (BMHTH), a nonprofit located
in Walla Walla, Kennewick, and Clarkston, Washington, serving people
living HIV/AIDS and people living with substance use disorder (SUD). I
am pleased to submit testimony on behalf of the people I serve, my
staff, my Board of Directors, and as a member of a large coalition of
public health, HIV, viral hepatitis, and harm reduction organizations,
to urge Congress to appropriate in fiscal year 2023 $150 million for
the Infectious Diseases and the Opioid Epidemic program at the Centers
for Disease Control and Prevention (CDC) in the Department of Health
and Human Services (HHS). This funding would help to save lives and
address the urgent overdose crisis by providing support and expanding
access to effective overdose prevention and harm reduction services
provided by syringe services programs (SSPs).
No other public health intervention has been as thoroughly studied
and examined in the last twenty-five years as SSPs. Notably, harm
reduction work conducted at SSPs both satisfies classic public health
objectives of primary, secondary, and tertiary health improvement
(e.g., reduce the incidence of bloodborne pathogens, reduce the
sequelae associated with needle use, and increase entry into treatment,
respectively), and advances our understanding of real-time changes
affecting our clients -front-line work that helps local and State
public health jurisdictions ensure their work is relevant and useful.
At BMHTH our strategic plan also includes reducing overdose and
overdose death, and our hard work is showing success.
By every metric, the environment in which SSP clients find
themselves is collapsing. They report to my staff and me that they have
shifted from prescribed opiates to heroin, and now to fentanyl in the
form of counterfeit oxycontin. Synthetic opioids appear to be driving
much higher rates of overdose and contributing more often now to
overdose death. In Washington State, an analysis of 2020 data on
accidental overdose showed fentanyl was present in 70 percent of the
toxicology results on autopsy. Meanwhile the median age of overdose
death in Washington State has dropped to 29, indicating that many young
people probably have died from their drug use before realizing how
serious their substance use had become.
Earlier this month a young woman walked into a local SSP program
and told me that she had overdosed on fentanyl the night before. I told
her I was very glad to see her, since that was the case. She asked for
naloxone. I gave her four kits of the reversal medication so she could
bring some back to her friends who also use fentanyl and who live about
90 minutes away. She mentioned that when she ``came to'' in the
emergency department at the Walla Walla hospital, the doctor left her
room quickly, crying. He returned shortly thereafter and explained that
she was the first fentanyl overdose he'd been able to revive after
losing six others--almost one person per day in his ER alone--in the
preceding week.
It is incredibly important for your subcommittee to understand how
urgent the overdose crisis is right now, not just in Washington State,
but across our Nation. Naloxone distribution is essential, and getting
it to the communities most at risk is paramount. A 5-year SAMHSA grant
in Washington State that concluded in August 2021, in which BMHTH
participated, showed that 1 in 7 naloxone kits given to clients at SSPs
was used to attempt an overdose reversal. Robust naloxone distribution
is part of Washington State's current national drug control strategy as
well as part of the Washington State opioid crisis response plan. SSPs
like mine have saved lives and made a significant difference in our
regions and we need more support now. Comprehensive services to
increase access to drug treatment and recovery are also necessary, but
we must save people's lives first so that they have the chance to
benefit from these interventions.
As a rural health provider who for the past 2 years has battled
syndemic crises in HIV, hepatitis C, COVID-19, and the overdose crisis,
I sincerely request that Congress provide the $150 million requested
for the health of our communities in central and southeast Washington
State and nationwide. We are exhausted, but steadfast in our commitment
to keeping our community members alive and helping them on the pathway
to health. I have met and talked to grandmothers who became addicted
after knee replacement surgery, veterans who became addicted after
three tours of duty in Iraq and surviving a shrapnel injury, nurses who
started stealing medications because they'd experienced too much stress
in the emergency department, a middle-aged man whose parents had
injected him with heroin as a child to make him quiet down ... my list
of stories is harrowing, and sadly, it is growing. We need real relief
and support now.
In Washington, our Attorney General has doggedly sued opioid
distributors and manufacturers and won settlements. We hope that these
gains will help fund life-saving services, but alone they won't restore
our communities to their condition prior to the current crisis. Worse,
COVID-19 has disrupted the ability of many community-based
organizations to order naloxone while at the same time more fentanyl
appeared in the drug market. There must be a robust Federal response to
this unprecedented crisis both to save lives and build back our
communities. Congress has the resources necessary to halt these
dramatic losses and start needed healing.
In the meantime, as of April 30, 2022, we have reports of more than
230 overdose reversal attempts in southeast Washington with our
naloxone distribution program, a trend that would bring us to 658 by
the end of this year. In 2021 we saw 301 naloxone reversals. I cannot
state clearly enough how quickly the environment is disintegrating with
more than a doubling of overdoses expected based on current trends. The
data are shown in the table below.
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
As a service provider who provides harm reduction, low-barrier
treatment, intensive case management, field-based counseling, law
enforcement-assisted diversion, and jail-based opioid treatment, I have
attempted to fill many of the gaps I see in my rural region of
Washington State. I am doing everything in my power to support people
at risk of overdose and death, but I am faced with limited Federal
funding for SSPs and overdose prevention; work restrictions on
providers of treatment medications that make finding local providers
difficult; a fractured health care sector in my region; and a
skyrocketing overdose rate.
We know that people accessing SSPs are five times as likely to get
into treatment and three times as likely to lower their drug use by
frequency or quantity. A 2019 SSP survey conducted by the University of
Washington showed that more than three quarters of SSP participants
were somewhat or very interested in treatment. I urge you to please
help me get them the life-saving care that they need now by fully
funding the CDC's Infectious Diseases and Opioid Epidemic at $150
million in FY 2023. Thank you so much for your time and consideration
of my testimony.
[This statement was submitted by Everett Maroon, Executive
Director, Blue Mountain Heart to Heart, Walla Walla, WA.]
______
Prepared Statement of the Brain Injury Association of America
As the Nation's oldest and largest brain injury advocacy
organization, the Brain Injury Association of America (BIAA) is
submitting written testimony in support of increased funding for fiscal
year 2023 appropriations for Federal programs that impact approximately
2.87 million Americans who are treated annually in emergency
departments and hospitals for a traumatic brain injury (TBI) and their
families, who are generally the primary caregivers. While BIAA
appreciates your support for additional funding for FY 2022 to the U.S.
Department of Health and Human Services' (HHS) Administration for
Community Living (ACL) TBI Programs, the total program amount does not
support funding for all States and territories to participate in that
program designed to improve access to rehabilitation and community
services as intended by the Traumatic Brain Injury (TBI) Program
Reauthorization Act of 2018.
In addition, BIAA supports full funding for the National Concussion
Surveillance System administered by the CDC's National Center for
Injury Prevention and Control (NCIPC) in order to know the extent of
concussions or mild TBI in this country so that we can better recognize
and treat related symptoms. BIAA has also been a long supporter of the
ACL's National Institute on Disability, Independent Living, and
Rehabilitation Research (NIDILRR) program authorized by the Workforce
Innovation and Opportunity Act (WIOA) of 2014, which funds research
conducted by the TBI Model Systems. Specifically, BIAA urges:
--$19 million additional funding for the ACL TBI State Partnership
Program to provide funding to all States, territories and
District of Columbia;
--$5 million additional funding for the CDC's NCIPC to establish and
oversee a National Concussion Surveillance System as authorized
by the TBI Program Reauthorization Act of 2018; and
--$6.6 million to expand the NIDILRR TBI research capacity through
the ACL TBI Model Systems (TBIMS) in order to increase the
number of TBIMS from 16 to 18 ($2.5 million each; and to expand
TBIMIS collaborative research projects for additional research
on TBI as a chronic condition ($1 million).
A TBI can happen to anyone at any time and can lead to physical,
cognitive, and psychosocial or behavioral impairments ranging from
balance and coordination problems to loss of hearing, vision or speech.
Fatigue, memory loss, concentration difficulty, anxiety, depression,
impulsivity and impaired judgment are also common after brain injury.
Even ``mild'' injuries or concussions can have devastating consequences
that require intensive treatment and long-term care. Often called the
``silent epidemic,'' brain injury affects people in ways that are
invisible. The injury can lower performance at school and at work,
interfere with personal relationships and bring financial ruin.
The annual estimated cost to society exceeds $60 billion, and
consumers mistakenly believe employer health plans or the government
will pay for needed services in a health crisis. In reality, insurance
policies are geared to wellness and routine care, strictly limiting the
type, amount, and length of rehabilitation and post-acute brain injury
services available to most people. Therefore, families and individuals
living with brain injury generally look to public programs to address
these gaps in service delivery.
The following personal story explains all to well what can happen:
``I was in a really bad car accident on December 23rd, 2017. I
still to this day have little to no memory of what happened, only from
what I was told. It happened around 11pm, my ex-boyfriend was driving
my car and somehow ran off the road, hit a tree, the car flipped the
whole way around, I was immediately unconscious, he tried to drive away
but the car was totaled. He took me out of the car and laid me on the
side of the road while I was unconscious and bleeding internally, and
he ran away, basically leaving me there for dead. A man in a nearby
house heard what happened, came outside and saw me, called 911, my
heart stopped beating 3 different times, I had to be airlifted to
Hershey, I was immediately put into an induced coma which lasted 2
weeks.
I broke my spine, broke my neck, fractured my sternum and suffered
a severe traumatic brain injury, I also had a minor stroke while I was
in the coma which affected my whole right side. I lost my voice
completely because I was on a ventilator for longer than your supposed
to be, I had several skull fractures. I was then transferred to Hershey
rehab hospital which I stayed for 3 months. Had to learn pretty much
everything all over again. How to walk, write, spell, bath myself,
dress myself, feed myself. I came home sometime in March of 2018,
continued therapy. I'm still struggling with severe headaches, neck
pain, everything that comes with a brain injury. That happened when I
was 26, I'm 30 now. I was given very little hope of survival, but I'm
still here, still alive, telling my story.''
The causes vary from child abuse; motor vehicle crashes, falls,
military-related injuries, violence, industrial injuries, and sports-
related injuries. No one is immune from this disability. Yet, there are
few resources to support families and caregivers with assistance in
early recovery and through the rehabilitation process, let alone long-
term care needs. The ACL TBI State Partnership Grant Program is the
only program that assists States in building and expanding service
capacity to address the complex needs associated with brain injury that
generally require the coordination of multiple systems (e.g., medical,
rehabilitation, education, vocational, behavioral health, and Medicaid/
Medicare) and payers (e.g., insurance, Workers' Comp, State and Federal
programs). Twenty-eight States are currently funded by the ACL TBI SPP
for 5 years. We are requesting additional funding so that all States,
territories and District of Columbia may receive funding to address
gaps in services within their States.
CDC's National Injury Center initiated a pilot study as a first
step in implementing a national surveillance system to determine the
extent of mild brain injury or concussions in this country. Most
individuals with a concussion are treated in an emergency department or
physician's office and may not be reported in other data systems that
capture the number of Americans who are hospitalized with moderate to
severe TBI. Subsequently, Congress included $5 million authorization to
implement the National Concussion Surveillance System within the TBI
Program Reauthorization Act of 2018.
NIDILRR supports innovative projects and research in the delivery,
demonstration, and evaluation of medical, rehabilitation, vocational,
and other services designed to meet the needs of individuals with TBI
through TBI Model Systems grants. Each TBI Model System contributes to
the TBI Model Systems National Data and Statistical Center (TBINDSC),
participates in independent and collaborative research, and provides
valuable information and resources. This research is critical to help
TBI providers to better deliver services that result in good outcomes.
The Brain Injury Association of America was founded in 1980 by
individuals who wanted to improve the quality of life for individuals
who had sustained brain injuries and their families. Today, the
Association encompasses a nationwide network of more than 40 state
affiliates sharing in the mission of creating a better future through
brain injury prevention, research, education and advocacy. We urge you
to consider increasing funding to the ACL TBI Program; the ACL NIDILRR
program to expand TBI research; and to CDC to establish a National
Concussion Surveillance System.
Thank you for your continued support. Should you wish additional
information, please do not hesitate to contact me at:Susan H. Connors,
President/CEO, Brain Injury Association of America, Email
[email protected].
[This statement was submitted by Susan H. Connors, President/CEO,
Brain
Injury Association of America.]
______
Prepared Statement of Bridgercare
Dear Chairwoman Murray and Ranking Member Blunt:
As Executive Director of Bridgercare, I appreciate the opportunity
to submit testimony in support of expanding the budget for the Title X
family planning program (Office of Population Affairs, funded within
the Health Resources and Services Administration account). We recognize
and appreciate Chairwoman Murray's strong record of advocacy and
leadership in fighting for family planning services and urge this
subcommittee to take necessary action to move the program forward in
this year's bill by appropriating the full $400 million requested by
the Biden administration.
Bridgercare is a nonprofit Title X clinic in Bozeman, Montana that
has served our community for 50 years. Our mission is to provide
excellent, affordable reproductive and sexual healthcare and education
in a safe, supportive, empowering atmosphere. We serve over 5000
patients a year, around half of whom receive care on our sliding fee
scale where patient fees are based on income. We provide a wide range
of services from annual wellness exams, to STI testing and treatment,
to cancer screenings, genetic cancer counseling, pregnancy testing,
gender-affirming care, behavioral health counseling, and more. And as
of April of this year, we will steward Montana's Title X program in
place of the State health department through a new statewide nonprofit,
Montana Family Planning.
Title X is the only Federal program solely dedicated to providing
family planning services to people in the United States regardless of
income. It was enacted with broad bipartisan support in 1970: sponsored
by then-Representative George H.W. Bush and signed into law by
President Nixon. Prior to Trump administration changes to the program
in 2019, Title X served more than 4,000,000 patients across the
country, and about 18,000 in Montana (a significant number in a State
with a population of a little over a million). Title X clinics are
invaluable resources in communities, serving a population of patients
who often don't otherwise interact with the health care system. In
2016, 60 percent of women who received contraceptive services at a
Title X-supported provider had no other interaction with the medical
system that year.\1\
---------------------------------------------------------------------------
\1\ Ruth Dawson, ``What Federal Policymakers Must Do to Restore and
Strengthen a Title X Family Planning Program That Serves All,''
Guttmacher Institute (March 2021)
https://www.guttmacher.org/gpr/2021/03/what-federal-policymakers-
must-do-restore-and-strengthen-title-x-family-planning-program.
---------------------------------------------------------------------------
However, changes to the Title X program in 2019 decimated the
National network--Montana was no exception. Between 2018 and 2020, the
amount of patients served by Montana Title X clinics decreased by a
staggering 53 percent.\2\ We lost four clinics out of a network of 27.
What this means in real terms is that thousands of Montanans were left
without access to quality, affordable reproductive health care. Our
desire to see the Title X program made whole again, and expanded, in
Montana was a big factor in Bridgercare competing the state for
stewardship of the program.
---------------------------------------------------------------------------
\2\ Brittni Frederiksen, Ivette Gomez, and Alina Salganicoff,
``Rebuilding Title X: New Regulations for the Federal Family Planning
Program,'' Kaiser Family Foundation (November 2021)
https://www.kff.org/womens-health-policy/issue-brief/rebuilding-
title-x-new-regulations-for-the-federal-family-planning-program/.
---------------------------------------------------------------------------
Since being awarded the Title X grant for Montana by HHS, we've
already had five clinics reach out asking to join our network, and are
well on our way to rebuilding Title X in Montana--we intend to grow the
number of Montanans served by 10-15 percent each year for the next 5
years. Further, we'll develop a stronger administrative structure to
respond to the diverse needs of providers across the State; we'll
allocate dollars through clear, transparent means and ensure that Title
X funds achieve their maximum possible return on investment in Montana.
We'll focus on bolstering Title X services in rural, frontier, and
Tribal communities and adolescent, Indigenous, and other underserved
populations.
Expanding the Federal Title X program budget to $400 million will
likely coincide in a larger disbursement to Montana's Title X program,
helping us to increase support for our subrecipients in every part of
our state, and bolster investments in expanding reproductive health
care access to historically underserved communities. We hope that this
subcommittee will seize this opportunity to invest in quality,
affordable reproductive health care for millions of people across the
country. For more information, please contact: Stephanie McDowell, at
[email protected].
We thank you for your consideration of this request.
Sincerely.
[This statement was submitted by Stephanie McDowell, Executive
Director, Bridgercare.]
______
Prepared Statement of CAST
Since 1984, CAST (originally the Center for Applied Special
Technology) has worked tirelessly to ensure that our Nation is one
where learning has no limits for any individual. We pioneered Universal
Design for Learning (UDL), a framework for inclusive design of learning
and training environments that harnesses technology and instructional
practices to remove barriers to learning in digital as well as physical
settings. UDL is now incorporated in key Federal education, career
training, and workforce laws.\1\ UDL provides principles and guidelines
to support innovation and success by expanding and strengthening
preschool to post-secondary education as well as career training
opportunities, including access to Science, Technology, Engineering and
Math (STEM) for all individuals across the Nation.
---------------------------------------------------------------------------
\1\ See: Public Law 110-315, Public Law 113-228, Public Law 114-95,
Public Law 115-224, National Education Technology Plan 2021, U.S.
Department of Education.
---------------------------------------------------------------------------
Our aim is to create a level playing field where all learners have
equitable opportunities to succeed by expanding access and opportunity
to education and employment for all individuals, including those
historically marginalized due to race, language, income, or disability.
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 its important portfolio of projects that include
investments at the Federal level, in fiscal year 2023, CAST makes two
recommendations for the U.S. Department of Education:
(1) Include funding for a pilot to comprehensively develop and
systemically embed the UDL framework across multi-State/multi-district/
Tribal government [K-4 classrooms] as part of in-person, hybrid, or
virtual learning environment(s) for a minimum of 3 years. The pilot
will utilize the evidence-based principles, flexible scaffolds, and
supports of UDL and will be awarded to States/districts/Tribal
governments to support the full access of students with disabilities to
the general curriculum, and to support all learners at-risk due to
experiencing barriers to learning because of language, literacy,
socioeconomic factors, or disability.
(2) Fund education programs to sufficiently support States in
their efforts to train personnel and educate all K-12 students. Key
programs are:
(A) Elementary and Secondary Education
--Title I: $36.5 billion for students to access a quality
education, and
--Title II: $2.5 billion to support teacher professional learning
and student access to literacy, evidence-based instruction
and practices including UDL.
--Results for the Nation (LEARN): $192 million to improve English
Language Arts.
Examples of UDL funded in K-12 schools (via ESSA's Title I/II and/or
combined Federal and State funding).
California:
--The California Coalition for Inclusive Literacy has trained more
than 30 County Office of Education staff to become UDL coaches
in five counties across the State.
--The Far North Literacy Consortium in Northern California works with
five counties to implement UDL district-wide in rural areas of
the state.
--With joint funding from the National Science Foundation Co-Organize
Your Learning (CORGI) enhances engagement and learning through
a Google application (app) designed for students and teachers
to use and collaboratively answer questions requiring higher
order reasoning.
New Hampshire:
--The NH UDL Innovation Network brings CAST together with 70 schools
and 500 educators across the State. Participants engage with a
small team from their school to learn what UDL is and how to
apply it in their K-12 learning environments. Through
collaborative school-based instructional rounds, online
learning, statewide workshop days, and team-supported
reflective practice, participants work to transform their
classrooms for greater access and to support student agency.
(B) Individuals with Disabilities Education Act (IDEA):
--Part B Section 611: $16.2 billion-to place the IDEA on a glide
path to full funding (or 40 percent of the per pupil
expenditure promised to districts when the IDEA was first
passed in 1975).
--Part D-National Activities: To provide the infrastructure to
implement programs for students with disabilities through
professional development, technical assistance, and more.
Recommendations are:
-- State Personnel Development: $39 million.
-- Technical Assistance and Development: $49 million.
-- Personnel Preparation: $300 million
-- Parent Training and Information Centers: $45 million
-- Media and Technology: $32 million
Examples of UDL funded under IDEA Part D:
--The National Center on Accessible Education Materials (AEM
Center) provides technical assistance, coaching, and
resources to increase the availability and use of
accessible educational materials and technologies for
learners with disabilities across the lifespan. The
Center's Quality Indicators provide practitioners,
administrators, researchers, policymakers, and parents/
caregivers with actionable steps toward increasing the
availability and use of accessible materials and
technologies from early learning through postsecondary
education and workforce development.
--The Center on Inclusive Software for Learning has created and
launched Clusive, a free, flexible, adaptive, and
customizable digital learning environment. Students can use
Clusive to read assigned or free-choice books and articles,
build their own personal library, and take advantage of
Clusive's growing public library. Clusive helps learners
build self-awareness through discovering, choosing, and
using preferences that help build learning skills.
(C) Career and Technical Education (CTE):
--State Grants and National Programs: $1.6 billion so States can
develop career training pathways responsive to the needs of
business and of learners that include a diverse population
who may experience barriers such as poverty, low literacy,
language and/or disability.
Examples of UDL in CTE: CAST's work with States, school districts and
private partners increases access to well-designed curriculum and
career training incorporating UDL that is especially focused on diverse
youth and young adult learners. Two recent examples are:
--Outdoor Recreation Pathways (Tillotson Foundation): The project
brings together outdoor recreation industry professionals,
students, and educators to develop competencies and outline
a CTE pathway into high-wage high-demand careers in this
emerging field for youth in New Hampshire.
--BioFab Explorer: BioFab Explorer is a free educational resource
developed in partnership with industry members from the
Advanced Regenerative Manufacturing Institute (ARMI)/Biofab
USA, as well as in collaboration with CTE educators and
their students in New Hampshire. This free career
exploration resource is meant to attract high school
students into biomanufacturing. Biofab Explorer embeds UDL
by providing learners with several pathways through the
content and allowing everyone to build a customized user
experience. Information is presented through multiple
modalities to provide users with choices that best meet
their needs.
(D) Vocational Rehabilitation:
--Demonstration and Training Programs: $40.8 million for grants to
spur innovative approaches and new partnerships that
address long-term barriers as well as novel challenges that
limits employment of individuals with disabilities.
CAST appreciates the subcommittee's consideration and urges a
continuing investment 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 the subcommittee considers funding for career training and
employment, CAST makes the following recommendation for the U.S.
Department of Labor (DOL): Provide increased investments in research as
well as career-exposure and training for eligible youth, young adults
and adults who may experience barriers due to educational access/
completion, literacy and/or disability. Key programs are:
(A) Office of Disability Employment Policy:
--Research and Demonstration: $9 million to continue to develop,
influence and expand employment-related policies and
practices so that every youth, young adult, and adult with
a disability gains access to career training and STEM
career experiences.
(B) YouthBuild: $145 million to support grants that provide work-
based pre-apprenticeships, in support of unemployed youth and those who
left high school prior to graduation.
(C) Job Corp: $1.6 billion to ensure participants receive training
that reflects the labor market's need for in-demand skills conveyed by
up-to-date industry standards including creating proactive and
innovative partnerships that further modernize its training and connect
industry leaders to a diverse student body.
Examples of UDL funded by DOL:
--CEE-STEM: An Online STEM Career Exploration and Readiness
Environment for Opportunity Youth is a web-based STEM
Career Exploration and Readiness Environment to promote
STEM understanding and knowledge as a part of classroom and
career training for out of school youth. CAST, UMass
Amherst College of Education, and YouthBuild USA developed
the CEE-STEM project and utilized the UDL framework to
create a personalized and portable digital tool for youth
to explore STEM careers, demonstrate STEM learning, reflect
on STEM career interests, and take actions to move ahead
with STEM career pathways of interest. Going beyond the
pilot, a customized version of the tool was also developed-
to align with alternative careers, industries, or
educational environments, and allows use of the e-portfolio
for other purposes and populations. The e-portfolio was
also piloted in two high school CTE settings and a
registered pre-apprenticeship setting.
--The Wisconsin Regional Training Partnership supports the
implementation of CAST's UDL e-portfolio in pre-
apprenticeship programs in Wisconsin and Minnesota to help
prepare and assess preparedness for the Industrial
Maintenance Technician apprenticeship pathway. Partners are
Jobs for the Future and SPR under the Apprenticeship
Inclusion Models grant funded by the Office of Disability
Employment within DOL.
CAST urges the subcommittee to further invest in programs that
expand the use of the UDL framework. In doing so, Congress would
increase the capacity of States, districts, schools and career training
programs to provide more robust professional learning and other needed
technical assistance so that teachers have the tools and resources they
need to teach and provide educational support to all learners. It is
imperative that all youth and young adults, including first-time career
seekers or those desiring new opportunities, have access to workforce
development and career pathway strategies and programs that are
designed from the beginning with their learning variability in mind.
CAST appreciates the opportunity to provide testimony to the
subcommittee for the fiscal Year2023 appropriations bill. We look
forward to working with you as you develop a final appropriations bill
that recognizes UDL as an integral component to K-16 education, and to
increasing and sustaining a well-trained and vital workforce. Sherri
Wilcauskas, [email protected], www.cast.org
Prepared Statement of the CDC Coalition
The CDC Coalition is a nonpartisan coalition of 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. We
urge a funding level of at least $11 billion for CDC's programs in FY
2023 to help ensure the agency has adequate resources for its many
important programs to improve the public's health. We appreciate the
increases provided for some CDC programs in FY 2022 and we urge
Congress to continue efforts to build upon these investments and
increase funding to strengthen all of CDC's programs.
CDC serves as the command center for the Nation's public health
defense system against emerging and reemerging infectious diseases as
well as man-made and natural disasters. From playing a leading role in
aiding in the surveillance, detection and mitigation of the COVID-19
pandemic in the U.S. and globally, to monitoring and investigating
other disease outbreaks, to pandemic flu preparedness, CDC is the
Nation's--and a global--expert resource and response center,
coordinating communications and action and serving as the laboratory
reference center. CDC serves as the lead agency for bioterrorism and
public health emergency preparedness and response programs and must
receive sustained support for these critical programs. 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 also urge you to provide adequate funding for
CDC's infectious disease, laboratory and disease detection capabilities
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.
We thank you for your support for important public health
infrastructure programs including the Public Health Infrastructure and
Capacity program which will provide flexible funding to strengthen core
public health infrastructure and capacity needs at all levels of
government, the Public Health Workforce and Career Development program
to ensure the Nation has a strong and well-trained workforce and Public
Health Data Modernization Initiative is helping to build a world-class
and modern data infrastructure system to ensure all systems can
communicate and share data seamlessly with one another to adequately
respond to the next public health emergency.
Injuries are the leading causes of death for people ages 1-45.
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. CDC reports
that in 2019, the total economic cost of both fatal and nonfatal
injuries totaled $4.2 trillion. In 2021, drug overdoses killed more
than 100,000 individuals nationwide. CDC provides States with resources
for opioid and other drug overdose prevention programs and to ensure
that health providers to have information to improve opioid prescribing
and prevent addiction and abuse. In 2022, there were 45,222 firearm-
related fatalities in the U.S. We thank Congress for providing CDC with
dedicated funding for firearm morbidity and mortality prevention
research and strongly urge you to increase funding in FY 2023 to $35
million at CDC. The National Center for Injury Prevention and Control
must be adequately funded to conduct research, prevent injuries,
address the Nation's drug overdose epidemic and help save lives.
In 2020, 696,962 people in the U.S. died from heart disease, the
Nation's number one cause of death. More males than females died of
heart disease in 2020, 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 2020, 160,264 people died of stroke, accounting
for about one of every 19 deaths. Annually, heart disease and stroke
cost the U.S. an estimated $378 billion in health care and lost
productivity. CDC's Heart Disease and Stroke Prevention Program;
WISEWOMAN; Division of Nutrition, Physical Activity, and Obesity; and
Million Hearts improve cardiovascular health and we urge you to provide
adequate funding for these important lifesaving programs.
More than 1.9 million new cancer cases and over 609,000 deaths from
cancer are expected in 2022. The amount spent on cancer related
healthcare is expected to grow from $183 billion in 2015 to $246
billion in 2030--an increase of 34 percent. CDC funds all 50 States,
DC, 7 Tribes and Tribal organizations and 7 U.S. territories and
Pacific Island jurisdictions to develop comprehensive cancer control
plans. The National Breast and Cervical Cancer Early Detection Program
helps millions of low-income, uninsured and medically underserved women
access lifesaving breast and cervical cancer screenings and provides a
gateway to treatment and the Colorectal Cancer Control Program improves
screening rates among targeted, low-income populations aged 50-75
years.
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 nearly one million individuals quit smoking and
millions more to make a serious quit attempt. Congress must continue to
support these and other programs to reduce the enormous health and
economic costs of tobacco use in the U.S.
Of the more than 37 million Americans living with diabetes, more
than 8.5 million cases are undiagnosed. Diabetes is the leading cause
of kidney failure, nontraumatic lower-limb amputations, and new cases
of blindness among adults in the U.S. and the total direct and indirect
costs associated with diabetes were $327 billion in 2017. We urge you
to provide adequate resources for CDC's Division of Diabetes
Translation and the National Diabetes Prevention Program which fund
critical diabetes prevention, surveillance and control programs.
CDC provides national leadership in helping control the HIV
epidemic by working with community, state, national, and international
partners in surveillance, research, prevention and evaluation
activities. CDC estimates that about 1.2 million Americans are living
with HIV with more than 13 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 26 million new infections occurred in 2018. STDs,
including HIV, cost the U.S. healthcare system almost $16 billion
annually in direct lifetime medical costs.
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.
We thank the committee for its investment in the Social
Determinants of Health program and urge you to increase funding for the
program to ensure that public health departments, academic institutions
and nonprofit organizations are supported to address the SDOH that
contribute to high health care costs and preventable inequities in
health outcomes.
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 13 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 climate change and
reduce, monitor and track exposure to lead and other environmental
health hazards. Increased funding for all NCEH programs is critical to
protecting the public from environmental health hazards and reducing
illness, disease, injury and even death.
To meet the many ongoing public health challenges facing the
Nation, including those outlined above, we urge you to provide at least
$11 billion for CDC's programs in FY 2023.
[This statement was submitted by Don Hoppert, Director of
Government
Relations, American Public Health Association.]
______
Prepared Statement of the Centers for Disease Control and Prevention
Dear Chairwoman Murray, Ranking Member Blunt 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 2023 (FY23). 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 increase funding
to a $2.5 million appropriation for the program in FY23 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. The
program has been flat funded since Fiscal Year 2015. The additional
$500,000 would fund: (1) a systemic literature review to determine
prevalence of TS and tic disorders, (2) a systematic literature review
to document cost and impact of TS and tic disorders, (3) small grants
to pilot innovative approaches at Centers of Excellence (CoE) in 5-7
States to address priority needs including health equity, transition,
and suicide prevention among families affected by TS and tic disorders
through CoEs, and (4) two new Continuing Medical Education (CME)
modules to serve U.S. providers to increase providers' ability to
identify, diagnose and treat tics and tic disorders. With your support
at the increased level of $2.5 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 50 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. A recent Coronavirus
impact survey, conducted by TAA (https://tourette.org/coronavirus-and-
tourette-syndrome/), found that 82 percent of respondents said their
tics or other symptoms worsened during the pandemic.
The CDC Tourette Syndrome Website (https://www.cdc.gov/ncbddd/
tourette/data.html) on data and statistics States that data suggest
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. These statistics outline the need
for additional research on prevalence. Diagnosis is often complicated.
Among children diagnosed with TS, 83 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 health care
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 2023 for the Tourette Syndrome Public
Health Education and Research Program at CDC's National Center for
Birth Defects and Developmental Disabilities at the increased level of
$2.5 million.
______
Prepared Statement of Choose Healthy Life
summary of fiscal year 2023 recommendations
_______________________________________________________________________
--Please provide the National Institutes of Health (NIH) with at
least $49 billion to facilitate continued growth in rare
disease research activities.
--Please provide proportional increases for the individual NIH
institutes and centers, and $660 million for the National
Institute on Minority Health and Health Disparities (NIMHD)
consistent with the administration's budget request.
--Please provide a separate, meaningful increase to advance and
adequately support the emerging Advanced Research Projects
Agency for Health (ARPA-H).
--Please provide the Centers for Disease Control and Prevention (CDC)
with at least $11 billion to support public health efforts.
--Please provide proportional increases for the individual CDC
centers, please continue to support the Ending the HIV
Epidemic Initiative, and please provide the Social
Determinants of Health program with $150 million consistent
with the administration's budget request.
--Provide the Health Resources and Services Administration (HRSA)
with a funding level of at least $9.8 billion
--Please continue to provide meaningful funding to support ongoing
COVID-19 response activities.
--Please establish a faith and community-based Health Equity
Innovation Fund of at least $100 million. The fund will provide
resources to organizations that created a health workforce to
address COVID-19 in underserved communities and now need
resources to sustain that workforce as it addresses the
underlying health inequities that led to the disproportionate
morbidity and mortality the communities faced during the
pandemic.
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, and distinguished members
of the subcommittee, thank you for the opportunity to present the
written testimony of Choose Healthy Life. On behalf of the communities
we serve, we deeply appreciate the FY 2022 research and public health
funding for COVID, for infectious diseases, for health equity, and for
chronic conditions. As you work with your colleagues on FY 2023
appropriations, please continue to invest in public health and support
organizations conducting innovative faith-based and community outreach.
About Choose Healthy Life
Choose Healthy Life (CHL) is a Black church initiative that ensures
churches--the oldest and most trusted institutions in the Black
community--receive the necessary resources, training, and support to
address COVID-19 and other health inequities by making available health
services to hard-to-reach communities.
With funding from the Quest Diagnostics Foundation, in January
2021, CHL established a full-time faith-based health workforce
initially in fifty (50) Black churches in five major cities focused on
administering COVID-19 testing and vaccination.
Based on the early success of the program, CHL churches were
visited by both VPOTUS and FLOTUS, and in August 2021, CHL received
funding from HRSA and grew its workforce to 120 churches across 13
States and the District of Columbia.
Since launch, CHL has conducted nearly 2,500 testing/vaccination
events and administered over 90,000 COVID-19 tests and vaccinations
through its churches.
Choose Healthy Life, founded by Debra Fraser-Howze, is guided by
its 10-member National Black Clergy Health Leadership Council that is
co-chaired by Rev. Al Sharpton (National Action Network) and Rev.
Calvin O. Butts III (The Abyssinian Baptist Church, Harlem, NY).
Advising the clergy is an acclaimed Medical Advisory Board that
includes former HHS Secretary Dr. Louis Sullivan, former CDC Director
Dr. Tom Frieden, our Nation's first female medical doctor to serve in
congress Dr. Donna Christensen, Co-founder of the Black Coalition
Against COVID-19 Dr. Reed Tuckson and the Nation's top obesity medicine
expert Harvard Medical School's Dr. Fatima Cody Stanford. Choose
Healthy Life demonstrates the power that comes from the union of
bringing faith and science together to address health disparities.
As the COVID-19 pandemic enters the endemic phase, CHL is pivoting
its faith-based health workforce to focus on addressing key underlying
health inequities--specifically obesity, diabetes, hypertension,
maternal and mental health.
As stated by CDC Director Dr. Rochelle Walensky, ``Your model of
establishing in each church a full-time public health navigator ...
trained and charged with providing access to COVID-19 testing and
vaccinations in the immediate short-term while addressing other health
disparities in the long term ... is a sustainable, scalable, and
transferable approach to address public health disparities and
inequities in the Black community ... it will serve us well far beyond
the pandemic.''
About Health Disparities & CHL Support
--Healthcare outcomes in the Black community lag far behind
healthcare outcomes in comparison to the White population:
--Adults are 30 percent more likely to be obese
--60 percent more likely to be diagnosed with diabetes
--Men are 30 percent and women 60 percent more likely to have high
blood pressure, with women twice as likely to have stroke
--Women are 40 percent more likely to die of breast cancer
--Twice as likely to die from COVID-19 and less likely to be
vaccinated
About The Black Clergy Action Plan to Eliminate COVID-19 and Address
Health Equity
--The Black church is the oldest and most trusted institution in the
Black community and has the power to influence and drive change
--Establishes a health workforce in the Black Church to deliver
vaccinations, testing, and to provide health services through
local partners to those most in need
--Ensures that Churches are funded to sustain and build out its
health services offering and effectively measure local impact
--Raises awareness and educate the Black clergy and community about
COVID-19 and other health disparities
--Establish a network of trusted health navigators in the Black
church to develop and execute a Community Solutions Action Plan
(CSAP) to effectively measure local impact
--Proactively engages high-risk communities through COVID-19 testing/
vaccination campaigns with the goal of stopping the spread of
the virus and establishing pandemic preparedness
--Informs, educates and addresses health inequities that exist within
the community (i.e. obesity, diabetes, and hypertension)
through preventative health care and wellness outreach
About the Health Equity Innovation Fund
The Health Equity Innovation Fund will provide resources to
organizations that created a health workforce to address COVID-19 in
underserved communities and now need resources to sustain that
workforce as it addresses the underlying health inequities that led to
the disproportionate morbidity and mortality the communities faced
during the pandemic. Many of these organizations sprung to life from
within the community with private support to immediately address the
pandemic. They have been results oriented, culturally competent, and
directed by trusted leaders in the community. Too often the government
provides resources to address challenges in underserved communities
during a time of crisis and then abandons them after the crisis is
over. The government needs to invest in those that are having an impact
to ensure that they are sustainable into the future.
[This statement was submitted by Debra Fraser-Howze, Founder &
President, Choose Healthy Life.]
______
Prepared Statement of the Chronic Disease Alliance
summary of fiscal year 2023 appropriations recommendations
_______________________________________________________________________
--Provide the National Institutes of Health (NIH) with at least $49.
Billion, a $3.5 billion increase over FY 2022.
--Please provide proportional increases for individual NIH
Institutes and Centers.
--Please provide additional, distinct funding for the emerging
Advanced Research Projects Agency for Health (ARPA-H) at
NIH, which would facilitate implementation of this
important program without supplanting ongoing NIH research
activities.
--Provide the Centers for Disease Control and Prevention (CDC) with
at least $11 billion, a $2.55 billion increase over FY 2022.
--Please provide CDC's National Center for Chronic Disease
Prevention and Health Promotion (NCCDPHP) with systematic
and meaningful annual increases to bring total funding up
to $3.75 billion over the next 3 years.
--Please provide $6 million for the Chronic Disease Education and
Awareness (CDEA) Program at CDC and NCCDPHP.
_______________________________________________________________________
Thank you for the opportunity to submit testimony on behalf of the
Chronic Disease Alliance and the National patient organization that
support Chronic Disease Day. Chairwoman Murray, Ranking Member Blunt,
and distinguished members of the subcommittee, we extend our thanks for
the significant investments in HHS through the FY 20222 omnibus
package, particularly the annual increases for NIH and CDC. As you work
with your colleagues on appropriations for FY 2023, please continue to
invest in programs that serve the chronic disease community, most
notably NCCDPHP at CDC. Thank you again for your leadership on health
funding issues and for the opportunity to present the views of the
chronic disease community.
about chronic disease day
Chronic diseases account for 7 of the top 10 causes of death in
America and more than 90 percent of our annual healthcare spending.
Hundreds of thousands of Americans who suffer from unpreventable
chronic conditions need access to care. But the deadliest and costliest
chronic diseases are also the most preventable. We promote actionable
resources to lower the rate of preventable chronic diseases so that our
healthcare system can better support individuals with unpreventable
chronic conditions and invisible illnesses.
about chronic disease & invisible illness
Chronic Disease Day is an opportunity for legislators to pledge to
address issues that impact across the entire chronic disease community.
These issues include funding needed medical research and public health
programs and advancing legislation that supports a patient's ability to
access the care they need. While we reflect on recent progress and
opportunities for further advancement around July 10th, our community
of supporters work year-round to educate policymakers about
contemporary issues and to use our stories and collective voice to
advocate for issues that impact across the chronic disease community.
NIH and CDC both play key roles in preventing and addressing
chronic illness. There is tremendous opportunity for the chronic
disease community with increased funding, particularly innovative and
impactful public health efforts led by CDC and NCCDPHP, such as the
emerging CDEA program. There is also tremendous overlap between chronic
conditions and health disparities, and we encourage robust resources
for efforts to promote health equity, such as those led by NIH's
National Institute on Minority Health and Health Disparities and CDC's
Social Determinants of Health Program.
[This statement was submitted by Clorinda Walley, President, Good
Days,
Chronic Disease Alliance
______
Prepared Statement of the Coalition for Clinical and
Translational Science
fiscal year 2023 appropriations recommendations
_______________________________________________________________________
--CCTS joins the broader medical research community in asking
Congress to provide the National Institutes of Health (NIH)
with at least a $3.5 billion funding increase for FY22, to
bring total agency funding up to a minimum of $49 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 $35 million
increase in dedicated line-item funding for FY23 to bring
annual support for the program up to a minimum of $641
million.
--Please provide separate, additional funding to further support
and implement the Advanced Research Projects Agency for
Health (ARPA-H).
--Please provide the Cures Acceleration Network (CAN) at NCATS with
$90 million in dedicated funding for FY23.
--Please provide the Institutional Development Awards (IDeA)
program and the Research Centers in Minority Institutions
(RCMI) program at NIH with meaningful proportional funding
increases for FY23.
--CCTS joins the broader public health community in requesting $500
million for the Agency for Healthcare Research and Quality
(AHRQ).
--CCTS joins the broader public health community in requesting $11
billion for the Centers for Disease Control and Prevention
(CDC).
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, and distinguished members
of the subcommittee, thank you for the strong support for the full
spectrum of medical research demonstrated through the FY22 omnibus
appropriations package. Particularly, thank you for maintaining line-
item funding for the Clinical and Translational Science Awards (CTSA)
program, for providing a meaningful annual funding increase for CTSAs,
and for the detailed instructions regarding utilization of CTSA funds
and the central role of CTSA hubs. The value, importance, and impact of
the CTSA program (as well as full-spectrum research at NIH) has been
highlighted by our ability to quickly develop treatments, vaccines,
diagnostic tools, and health information to quickly respond to the
ongoing COVID-19 pandemic, and through ongoing work to promote health
equity and enhance care delivery in rural and underserved communities.
As you work with your colleagues on FY 2023 appropriations, CCTS and
the broader stakeholder community encourage you to continue to support
the full spectrum of medical research and provide increased funding for
key clinical and translational research programs, including CTSAs.
about the coalition for clinical and translational science
The Association for Clinical and Translational Science, 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. While we appreciate that the administration's FY 2023 budget
request includes line-item funding for CTSAs, we are concerned that a
cut is recommended and more concerned by supporting Statements that
seem to indicate a change in focus for the CTSA program from core hub
support to more traditional project-based activities.
Most crucially, the appropriations committees have included
detailed 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 advancing full spectrum research and
team science as well as maintaining the integrity of the CTSA line-item
will be provided for FY 2023.
A Few Recent Examples of CTSA Program Efforts
University of Wisconsin
Within two weeks of the pandemic (March 2020) the UW-M CTSA-
collaborated with community partners and practice-based research
networks (PBRNs),to make available anonymous statewide electronic
health records data on 3.5 million residents to develop and disseminate
reports of areas at high risk of severe COVID-19 complications. Over
150 reports were shared with State and local health departments and
health systems throughout the state. Report requestors used information
to gain enhanced awareness of the communities they serve and aid in
COVID-19 response planning including preparing for potential surges,
focusing outreach and collaborative efforts, assessing resource
distribution, and identifying communication priorities and gaps. The
CTSA made interactive maps and tools available at https://nhp.wisc.edu/
covid-19/. Regional variations in vaccine acceptance and access were
identified as an important barrier to control the pandemic. To address
this problem, the UW-M CTSA developed an interactive COVID-19 Relative
Mortality Risk and Barriers to Vaccination Tool. This tool aids vaccine
intervention efforts that are appropriate for the community. The tool
is available at the same URL: https://nhp.wisc.edu/covid-19/.
Stanford University
Our CTSA's Clinical and Translational Research Unit (CTRU) provided
both clinic and laboratory services for the NIH RECOVER: A Multi-site
Observational Study of Post-Acute Sequelae of SARS-CoV-2 Infection
(PASC) in Adults. This study is a research initiative from the National
Institutes of Health seeking to understand, prevent, and treat PASC,
including Long COVID. Under PI Dr Upi Singh, Stanford in one of leading
recruitment sites in this national consortium of USA research
organizations, with 290 participants enrolled during the reporting
period. The CTRU performs participant visits along side other clinics
at Stanford and receives and processes all biospecimens collected at
Stanford.
As a result of CTSA infrastructure, in under 48 hours of the March
16th, countywide shelter-in-place, CTSA bioinformatics Faulty Lead, Dr.
Shah, led a ``data science response'' in which data related to COVID-19
patients were made available for Stanford researchers. CTSA Faculty
leaders also rapidly deployed protocols for the conduct of numerous,
multi-center clinical trials for COVID-19. They formed the COVID-19
Clinical Research Review Program (Chair: Ken Mahaffey) to adjudicate
the complexities of conducting multiple trials at the same time. They
reviewed 630 study requests since March 16th, 2020. This committee is
still in place.
CTSA Faculty leaders, rapidly deployed protocols for the conduct of
numerous, clinical research protocols impacted by COVID-19. They formed
the COVID-19 Clinical Human Subjects Research Committee (Chairs: Mary
Chen and Pooneh Fouladi) to adjudicate over 250 request. This committee
is still in place. Faculty Lead of CTSA BERD, Dr. Desai, developed an
Adaptive Master Trial, able to add promising treatment arms in real-
time and drop arms early for futility.
Tufts University
Since 2008, Tufts CTSI has provided outstanding resources and
services to support full-spectrum translation to our community. We also
have continually developed, demonstrated, and disseminated innovations
to improve and accelerate clinical and translational research. Beyond
supporting Hub research teams and incorporating these approaches into
our internal operations and service delivery, we are a national leader
in setting quality and efficiency standards and establishing clinical
and translational science best practices.
Our mature resource and service infrastructure and proclivity for
innovation allow us to respond rapidly and effectively to emerging
public health needs. At the start of the COVID-19 pandemic, in days, we
redeployed our resources and services, working closely with Tufts
Medical Center leadership. Our Clinical and Translational Research
Center became the hospital's primary unit for COVID-19 research, with
activation of two large Remdesivir inpatient studies in less than two
weeks, other COVID treatment and vaccine studies, and a Tufts CTSI-
initiated treatment trial for niclosamide, led by Dr. Selker and
supported by a CTSA supplement. The Tufts CTSI MIT Center for Clinical
and Translational Research helped design and produce novel personal
protective equipment and facilitated dissemination around the world. We
established a National COVID-19 Survivors Registry and a database
enabling a COVID-19 biorepository. The Tufts CTSI Pilot program funded
off-cycle COVID-19 research, and our Center for Research Process
Improvement led a hospital-wide process to prioritize research studies
and resource deployment. These represent a few of many examples of the
breadth of our resources and services provided and the high degree of
speed, flexibility, and collaboration of our teams when facing a public
health emergency.
[This statement was submitted by Harry P. Selker, MD, MSPH,
Chairman,
Clinical Research Forum and Linda B. Cottler, PhD, MPH, FACE,
President, Association for Clinical and Translational Science.]
______
Prepared Statement of the Coalition for Health Funding
------------------------------------------------------------------------
Centers for Disease Control & Prevention.. At least $11 billion
National Institutes of Health............. No less than $49 billion
Food & Drug Administration................ $3.653 billion
Indian Health Service..................... No less than $49.8 billion
Health Resources & Services Administration No less than $9.8 billion in
discretionary funds
Agency for Health Research Quality........ No less than $500 million
------------------------------------------------------------------------
The Coalition for Health Funding--an alliance of over 80 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. Together, our member organizations speak
with one voice before Congress and the administration in support of
federally funded health programs with the shared goal of improved
health and well-being for all. Each member organization has individual
funding priorities within the Department of Health and Human Services
(HHS), but we all believe that to truly improve public health, we need
strong, sustained, predictable funding for all Federal agencies and
programs across the continuum. The past 2 years have taught us many
things about the state of our public health infrastructure, which is
why it is so critical that investments are made to ensure we strengthen
areas such as research, prevention, and treatment programs. While we
work to end the current pandemic, annual sustained public health
investment will help ensure we are not only better prepared for the
next one, but importantly also protecting the overall health and
security of our Nation.
HHS agencies play different yet interconnected roles in addressing
our Nation's mounting health demands. COVID-19 has shown all Americans
that our government works best when well-resourced agencies play
complementary roles in defending and strengthening public health.
Americans have seen first-hand the work that the National Institutes of
Health did to fund certain vaccine technologies that Operation Warp
Speed took through the development process and that the Food and Drug
Administration (FDA) approved in record time to save American lives.
With emergency funding, uninsured Americans have been able to access
testing financed through the Health Resources and Services
Administration (HRSA). The Centers for Disease Control and Prevention
(CDC) routinely assessed available data to provide regular guidance to
the public on COVID-19 safety protocols. And the Agency for Health
Research Quality continues to deliver real world evidence on how we can
better respond to the pandemic.
We know that our response to COVID-19 was not entirely a success.
Our public health agencies were not as prepared for the pandemic as
they could have been. But instead of seeing that as a reason to deny
critical funding for these essential agencies, the Committee should see
this as an opportunity to rebuild our public health agencies through
robust funding and ensure that public health practitioners across the
country have what they need to combat the next pandemic while managing
the current one. We now know that pandemics are not science fiction.
They are not the past. They are our present, and they will be our
future. Shortchanging public health and health research programs--or
cutting health programs at the expense of others--leaves Americans
vulnerable to health threats and does nothing to prevent these problems
from arising in the first place.
Emergency funding to combat COVID-19 does not replace consistent,
sustained year-over appropriations. Partially this is because we must
stay vigilant in the face of the next pandemic. But we also must combat
other serious health and economic threats from chronic and emerging
diseases, environmental exposures, preventable conditions, workforce
shortages, and health disparities. Pre-existing conditions contributed
significantly to our COVID crisis, some of which are preventable, many
of which are manageable. We saw firsthand the impact of workforce
shortages and are continuing to deal with the fallout. Biomedical
research, treatment, prevention, and health promotion programs are
critical to success moving forward. Our public health infrastructure
must be equipped to handle the myriad challenges that it faces beyond
the extraordinary circumstances of the pandemic. In fiscal year (FY)
2022, discretionary health spending was only $108 billion, or 7 percent
of all discretionary Federal spending. Of this, a little less than half
supported medical research at the NIH, and the remainder supported all
other public health activities--disease prevention & response, health &
safety security, workforce development, and access to primary and
preventive care. Having learned from the past 2 years that these areas
of spending cannot be afterthoughts; we urge you to fund them
accordingly. To that end, we are calling for the following levels of
investment for specific public health agencies in FY23.
--CDC: At least $11 billion
--NIH: No less than $49 billion
--FDA: $3.653 billion
--IHS: No less than $49.8 billion
--HRSA: No less than $9.8 billion in discretionary funds
--AHRQ: No less than $500 million
To achieve these necessary targets, appropriators must also raise
the 302(b) allocation for the Labor-HHS-Education subcommittee to
address its important needs. The era of budget sequestration hollowed
out many of the very public health agencies we depended on to combat
COVID-19. What the current pandemic would have looked like with
appropriately funded agencies we will never know, but if we take our
recent experience seriously, we will not face the same fate with the
next pandemic. That's why the Coalition for Health Funding partnered
with the Campaign to Invest in America's Workforce, Committee for
Education Funding, and Coalition on Human in bringing together nearly
370 organizations to urge appropriators to raise the subcommittee's
allocation in FY23 to at least $239.59 billion.
We hope in your ongoing deliberations on FY 2023 and beyond you
will recognize that emergency funding during the acute phase of a
pandemic does not eliminate the need for sustained long-term funding to
the very agencies we trust explicitly with American lives. They need
the resources to develop the next generation of tools necessary to
protect the public's health from other health threats and to ensure the
solvency of Medicare's Trust Fund moving forward, which is of
particular salience given the role Medicare plays in the health care of
those who need it most 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 Erin Will Morton, Executive
Director, Coalition for Health Funding.]
______
Prepared Statement of the Coalition on Adult Basic Education
Chair Murray, Ranking Member Blunt, and members of the
subcommittee:
My name is Sharon Bonney, and I am the CEO of the Coalition on
Adult Basic Education (COABE). COABE is the leading professional
association for adult education, and we represent the 79,000 adult
educators and leaders around the country. Our teachers and leaders
provide numeracy, literacy, digital literacy, work readiness, soft
skills, high school equivalency and numerous wraparound services to
more than 725,000 adult learners nationwide. With over 2,200 WIOA Title
II programs around the country, adult education serves the Nation's
most vulnerable adults.
COABE is appreciative of the $15.5 million increase Congress
provided to the Adult Basic Education State Grants program under Title
II of the Workforce Innovation and Opportunity Act (WIOA) for fiscal
year (FY) 2022. Because of this funding, adult educators across the
country will be able to better serve adult learners and provide them
with the skills needed for the workplace. Our programs provide these
skills to 725,000 adult learners throughout the country, but there are
millions of Americans who need our services: 43 million adults are low-
skilled in literacy and 62.7 million adults are low-skilled in numeracy
in the United States.
Adult education programs provide an economic boost to participants.
According to a recent Economic Mobility Corporation study, ``unemployed
residents with prior U.S. work experience who enrolled in an
employment-focused English course boosted their earnings by an average
of more than $7,100 annually 2 years after starting the program,
compared with unemployed non-English speakers who weren't in the
program.'' Additionally, COABE estimates that for every dollar invested
in adult education, the surrounding community receives $60 back in
increased income, property taxes and savings on legal system and
welfare expenses.
Given this clear evidence of the economic boost adult education
programs provide to participants and communities, demand for these
programs is high. As a result, there are waiting lists in every State
for these programs. The pandemic has further challenged programs as
more adults have found that they need to enhance their literacy,
numeracy and digital skills to compete for jobs in the workplace, and
yet these very adults might not have access to technology and broadband
to enable them to participate in these programs.
Adult education programs have been working hard to deliver high-
quality education throughout the pandemic. These programs have turned
to online and hybrid delivery services. But greater investment in
technology, classroom space and professional development is critical.
If funded at proper levels, adult education programs can play a
significant role in the country's recovery from the pandemic by
providing millions of adult learners with necessary workforce and life
skills.
Adult education provides learners with opportunities to which they
may not otherwise have access. Learners often tell stories of how adult
education changed their lives. I want to share the thoughts of two
participants from Missouri and Washington that exemplify the power of
adult education:
``I have been living in this beautiful country for 16 years. In
2015, my life changed. I made the decision to go back to school
and try to get my HSE credential... I'm the first Spanish
student finishing the course and getting the HSE diploma from
the Spanish program, which was implemented in 2015, and I'm so
proud of my achievement.''
-- Jose Viveros Barcenas, St. Charles Community College Adult
Education and Literacy, Cottleville, Missouri
``The program was a great experience, and I learned a lot. I was
willing to expand what I learned in high school and the classes
were smaller, so I got more one on one with the teachers. I was
going for my GED and ended up with my diploma and now my
associates. I encourage anyone that wants to get their high
school diploma to go through HS21+. It is a great learning
experience, with great instructors.''
-- Raymond Silva, Skagit Valley College, Mount Vernon, Washington
We are encouraged by President Biden's FY 2023 Budget proposal,
which included an increase of $10 million for the Adult Basic Education
State Grants program. However, given the demand for these services and
the opportunity they provide learners, we would urge Congress to exceed
the President's proposed increase and provide $810 million for adult
education in the final fiscal Year2023 appropriations bill.
Thank you for your consideration. Please let me know if COABE can
be of any further assistance during the appropriations process.
______
Prepared Statement of the Congressional Fire Services Institute
Dear Chair Murray and Ranking Member Blunt:
On behalf of the Nation's fire and emergency services, we write to
urge your continued support for a vital program addressing the health
and safety of our Nation's firefighters. As you consider the Fiscal
Year (FY) 2023 Labor, Health and Human Services, Education, and Related
Agencies Appropriations bill, we urge you to provide $5.5 million for
the National Firefighter Registry.
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
scarcity 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.
During the 115th Congress, both the House and Senate unanimously
approved the Firefighter Cancer Registry Act (Public Law 115-194). This
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.
Over the past several years, the registry has been able to make
great strides, including developing an enrollment system to ensure
information security and ease of access for users; obtaining the Office
of Management and Budget's approval for the enrollment questionnaire;
and compiling brochures, videos, and quarterly newsletters to maintain
communication with the fire service regarding the status of the
registry.
However, the registry has also faced new challenges due to evolving
Federal requirements for data security and storage--in addition to the
steps that remain to continue the launch of the registry and keep its
vital work moving forward. To ensure that the National Firefighter
Registry does not face delays with regard to the collection and
analysis of data pertaining to cancer in the fire and emergency
services, we are requesting $5.5 million in FY 2023.
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
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 2023, COSSA urges the Committee to appropriate:
--$49.048 billion for the National Institutes of Health;
--$11 billion for the Centers for Disease Control and Prevention,
including $210 million for the National Center for Health
Statistics;
--$500 million for the Agency for Healthcare Research and Quality;
--$814 million for the Bureau of Labor Statistics;
--At least $815 million for the Institute of Education Sciences; and
--$161 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.
As you know, the need for increased investment in science has become
even more pronounced over the past 2 years in response to the COVID-19
pandemic.
national institutes of health
COSSA joins the more than 345 organizations in support of at least
$49.048 billion for the National Institutes of Health (NIH) base budget
in fiscal year 2023. COSSA appreciates the subcommittee's leadership
and its long-standing bipartisan support of NIH, especially during
difficult budgetary times. We also appreciate the Congress's interest
in innovating and pushing the agency forward through support for high-
risk, high-reward endeavors. It is critical that efforts to accelerate
discovery in new, creative ways work in tandem with-not at the expense
of-robust, sustainable support for fundamental and curiosity-driven
research.
To that end, COSSA urges the subcommittee to ensure that funding
for the new Advanced Research Projects Agency for Health (ARPA-H)
supplement the $49.048 billion recommendation for NIH's base budget,
rather than supplant the investments NIH makes to biomedical and
behavioral research across its institutes and center. To be truly
transformative, increased investment is needed on all fronts.
In addition, as the COVID-19 pandemic has underscored, it is
behavior change-not only medical intervention--that can help us gain
control in the days and weeks immediately following an outbreak. From
psychological research behind the merits of mass social distancing to
understanding cultural variations in risk perception as we tailor
communication about vaccine safety, the social and behavioral sciences
have been an essential part of the response. We must learn from this
experience and invest in our future preparedness by better committing
to understanding the human behavior and social systems at play.
To that end, COSSA urges the subcommittee to ``right-size'' NIH's
Office of Behavioral and Social Sciences Research (OBSSR), housed
within the Office of the NIH Director. This critical office 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. We are appreciative of the $10
million increase provided to OBSSR in the final fiscal year 2022
appropriations bill; however, behavioral and social science research at
NIH remains grossly underfunded. For example, OBSSR's fiscal year 2022
budget of $38.9 million represents only 1.5 percent of the total budget
of the NIH Office of the Director; under the President's proposal, this
would drop to 1.1 percent.
In addition, it is estimated that NIH funds roughly $700 million in
research related to behavioral and social science annually across its
institutes and centers; however, about 62 percent of that is also
classified as neuroscience research, leaving around $430 million
annually for non-neuroscience related social and behavioral studies.
This amounts to only 1.1 percent of the entire NIH budget annually.
Given all we have learned from the pandemic over the last few years,
research on the social influences of 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 the Senate to
emphasize support for OBSSR and direct NIH to finally support the
office at levels commensurate with the need for these critical
insights.
centers for disease control and prevention
COSSA urges the subcommittee to appropriate $11 billion for the
Centers for Disease Control and Prevention (CDC), including $210
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 its 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. One needs only to look at the varied responses
across different communities to COVID-19 guidance and policies
surrounding social distancing, mask-wearing, and vaccination to
understand the critical role understanding the social aspects of public
health plays in keeping Americans safe and healthy.
In addition, as the Department of Health and Human Services'
principal statistical agency, NCHS produces data on all aspects of our
health care system, including opioid and prescription drug use,
maternal and infant mortality, chronic disease prevalence, health care
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 health care
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 $500 million for the
Agency for Healthcare Research and Quality (AHRQ), which would allow
AHRQ to rebuild portfolios terminated as a result of years of cuts and
expand its research and training portfolio to address our Nation's
pressing and evolving health care challenges. AHRQ funds research on
improving the quality, safety, efficiency, and effectiveness of
America's health care system. It is the only agency in the Federal
Government with the expertise and explicit mission to fund research on
improving health care 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 given the critical role hospitals and group care
settings have played in the COVID-19 pandemic.
bureau of labor statistics
COSSA urges the subcommittee to appropriate $814 million for the
Bureau of Labor Statistics (BLS) for its core programs. BLS produces
economic data that are essential for evidence-based decision-making 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 at least $815 million for the Institute of Education
Sciences (IES) in fiscal year 2023. 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 $161 million ($141
million for Title VI and $20 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 Submitted by Wendy Naus, Executive
Director, Consortium of Social Science Associations.]
______
Prepared Statement of the Council of Academic Family Medicine
The member organizations of the Council of Academic Family Medicine
(CAFM) are pleased to submit testimony on behalf of programs under the
jurisdiction of the Health Resources and Services Administration (HRSA)
and the Agency for Healthcare Research and Quality (AHRQ). CAFM
collectively includes family medicine medical school and residency
faculty, community preceptors, residency program directors, medical
school department chairs, research scientists, and others involved in
family medicine education. We urge the Committee to appropriate at
least $59 million for the Primary Care Training and Enhancement
program, authorized under Title VII, Section 747 of the Public Health
Service Act HRSA. In addition, we recommend the Committee fund the AHRQ
at a level of at least $500 million in discretionary spending and
specifically fund $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 Annals of Family Medicine
(Petterson, et al Mar/Apr 2015). The primary care training and
enhancement programs and AHRQ research conduct research to enhance our
Nation's workforce and health infrastructure, improving primary care to
produce better health outcomes and reduce 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. This
program has not received an increase in funding since FY2020, just at
the time that the COVID-19 pandemic has highlighted many of the
failings of the current health care and public health infrastructure.
The PCTE program can help address these flaws. For example, additional
funding is needed for both residencies and medical school departments
to help address faculty retention, public health competencies, recruit
and retain students into primary care, develop new curriculum related
to the pandemic, address health equity concerns and to increase full
scope primary care physicians.
In this time of increasing primary care need, we urge you to
recognize the importance of maintaining and expanding funding for
programs that support the primary care workforce. Title VII funding for
primary care training is an evidence-based investment in the future
care of the Nation.
A 2021 report by The National Academy of Sciences, Engineering and
Medicine identified the problems with under-funding Title VII programs
finding that despite the demonstrably better patient outcomes that have
resulted from Title VII investments, Title VII funding remains only a
tiny fraction of the total GME funding; reduced to less than 10 percent
since the 1960s.\1\ 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 $59 million in FY 2023 to
allow for a robust competitive funding cycle. This funding level will
help continue important Title VII programs who use primary care
training funding to develop innovative programs and curricula related
to interdisciplinary training in rising new competencies.
---------------------------------------------------------------------------
\1\ National Academies of Sciences, Engineering, and Medicine 2021.
Implementing High-Quality Primary Care: Rebuilding the Foundation of
Health Care. Washington, DC: The National Academies Press. https://
doi.org/10.17226/25983.
---------------------------------------------------------------------------
We also ask for the following report language to accompany the
increased funding level: The Committee includes $59 million, an
increase of $10 million over the FY 2022 level, for Primary Care
Training and Enhancement programs, which support training and direct
financial assistance for future primary care clinicians, teachers, and
researchers. This additional funding is to allow for a robust grant
competition, to support programs within academic administrative units
related to expanding the number of medical students choosing primary
care careers. To stimulate this supply, it's important to reach as many
allopathic and osteopathic primary care medical school departments as
possible to explore innovations in training, more research into
increasing primary care production, and dissemination of best
practices.
Agency for Health Care Research and Quality (AHRQ)
Primary care clinical research (PCR) is a core function of AHRQ.
Primary care research includes: translating science into patient care,
better organizing health care to meet patient and population needs,
evaluating innovations to provide the best health care to patients, and
engaging patients, communities, and practices to improve health. AHRQ
has proved to be uniquely positioned to support best practice primary
care research and to help disseminate the research nationwide. However,
reduced levels of AHRQ funding in the past have exacerbated disparities
in funding primary care research. Important primary care research
initiatives have been unfunded in recent years such as research for
patients with Multiple Chronic Conditions (MCC) and the statutorily
authorized Center for PCR.
We greatly appreciate the inclusion of increased funding in the FY
2022 omnibus package, and hope we can increase that further in FY 2023.
With funding for FY 2022 of $350,400,000 million, including $2 million
dedicated to the Center for Primary Care Research within it, AHRQ is in
a unique position to further PCR 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. The President's FY 2023 budget request
includes $10 million in funding for primary care research in general.
We ask that $5 million be provided as a line item to the Center for
Primary Care Research within AHRQ to help coordinate and direct primary
care research funding at AHRQ. For this reason, we are supporting
additional overall funding increases for FY 2023 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.
In 2020, the RAND Corporation published a report appropriated by
Congress and commissioned by AHRQ that assessed federally funded PCR
since 2012 regarding gaps and to recommend improvements. The report
emphasized the significant role AHRQ plays in PCR. RAND made several
recommendations, one of which was to provide targeted funds to create a
proper hub for Federal PCR. This is important because PCR is a distinct
science that differs from health services research. With the $5 million
in dedicated funds for PCR, AHRQ could prioritize and coordinate
investments in PCR directly improving the health and wellbeing of
Americans. The National Academy of Medicine's report on Primary Care
concurs with RAND's assessment on the importance of targeted funding
for PCR, demonstrating the variety of stakeholders which share common
ground on the importance of prioritizing PCR.\2\
---------------------------------------------------------------------------
\2\ National Academies of Sciences, Engineering, and Medicine 2021.
Implementing High-Quality Primary Care: Rebuilding the Foundation of
Health Care. Washington, DC: The National Academies Press. https://
doi.org/10.17226/25983.
---------------------------------------------------------------------------
A real-world example of successful AHRQ work supporting primary
care practice and patient safety is funding to the Oregon Health &
Science University, the Rural Practice-based Research Network helped
lead Healthy Hearts Northwest by recruiting 100 primary care practices
to develop team-based quality improvement infrastructure improvements
in small to medium-size practices. The Evidence Now Initiative operated
as health extension agents in Oregon's frontier communities. In another
example, AHRQ funding has allowed the University of Missouri to build
infrastructure for patient-centered outcomes research in three arenas.
The first study evaluated the advantages and disadvantages of
endovascular vs. open surgery for legs with inadequate blood flow. The
second project focused on improved discharge plans from skilled nursing
facilities through improved primary care connections. Missouri
partnered with the AAFP to create a national research network to
improve chronic pain for the third project.
In conclusion, we support increased funding for AHRQ at the level
of $500 million in discretionary spending for FY 2023 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's Primary Care Training and Enhancement Program and AHRQ--
both entities which enhance our Nation's primary care workforce and
infrastructure.
[This statement was submitted by Winston Liaw, MD, MPH, Chair,
Academic Family Medicine Advocacy Committee, Council of Academic Family
Medicine.]
______
Prepared Statement of the Council of State and Territorial
Epidemiologists
Chair Murray, Ranking Member Blunt, and members of the
subcommittee, thank you for the opportunity to submit this testimony
for the record in support of at least $250 million in Fiscal Year 2023
funding for the Data Modernization Initiative and the Center for
Forecasting and Outbreak Analytics at the Centers for Disease Control
and Prevention (CDC). My name is Janet Hamilton, I am the Executive
Director of the Council of State and Territorial Epidemiologists
(CSTE). CSTE represents public health epidemiologists nationwide
working on the front lines to respond to emerging public health
threats--including, recognizing and identifying the very first
introductions of COVID-19, and then responding daily during the COVID-
19 pandemic.
As you know, COVID-19 exposed deadly gaps in our Nation's public
health data infrastructure. After years of neglect, our antiquated
public health data systems were not prepared to handle the onslaught of
a pandemic caused by a highly infectious virus. Instead, paper-based
systems, phone calls, spreadsheets, and faxes requiring data entry by
hand remain in widespread use and left us ill-equipped to combat the
spread of the virus as it emerged and surged. Delayed detection and
response had dire consequences. And, while COVID-19 is the most
recent--and ongoing-threat that requires a robust public health
response, it is not the only threat we face nor last public health
threat we will face. As we submit this, a new emerging threat leading
to unexplained hepatitis in children is emerging--illnesses
(potentially due to adenovirus) can be severe, associated with
hospitalization and liver transplants in some children. Led by the CDC,
State and local health departments across the country need a nationwide
public health surveillance system to detect emerging threats and
facilitate immediate response to keep our population safe.
Prior to the COVID-19 pandemic, CSTE initiated the call for
improved public health surveillance systems. The pandemic only made it
clearer that this goal cannot wait. With our partners at the Data:
Elemental to Health Campaign we called on Congress to provide the first
ever dedicated funding for public health data systems and to build a
21st century public health data superhighway. Thanks to the work of
this subcommittee, Congress answered the call and has provided annual
funding as well as critical injections of supplemental funding through
the CARES Act and the American Rescue Plan for CDC's public health Data
Modernization Initiative--or DMI.
The DMI is a commitment to building the world-class data workforce
and data systems that support daily operations and are `response-ready'
for the next public health emergency with capacity to surge and scale.
We are grateful to this subcommittee for providing more than $1 billion
to date for DMI through annual and supplemental appropriations.
Unfortunately, it is not enough to meet our Nation's current or long-
term public health surveillance needs, which Data: Elemental to Health
estimates will cost at least $7.84 billion over 5 years. In the
immediate term, we need robust, sustained, annual funding for DMI to
ensure we are providing resources for public health systems and
infrastructure, including at State and local health departments, to
keep pace with evolving technology.
DMI is an enterprise approach and there are five key interconnected
pillars essential for public health data modernization. They are:
1. Electronic Case Reporting,
2. The National Notifiable Disease Surveillance System (NNDSS),
3. The Electronic Vital Records System,
4. Syndromic Surveillance, and
5. Laboratory Information Systems.
We need electronic Case Reporting (or eCR) to give health care
providers a means to seamlessly communicate with public health. eCR
will help guarantee that when providers see patients--in any setting--
patient demographics, clinical information, and test results for
reportable conditions (including, but by no means limited to COVID-19)
are rapidly shared with State and local public health and then able to
be seamlessly incorporated into CDC's National Notifiable Disease
Surveillance System (NNDSS). eCR also assists with data completeness
and rapidly understanding health inequities. DMI investments in eCR are
already paying off. For example, race and ethnicity data received on
case reports in pilot jurisdictions are over 90 percent complete which
will support a more robust ability to appropriately address health
disparities. More than 11,000 health care facilities were brought on
board between January 2020 and February 2022. All 50 States, DC, and
Puerto Rico, as well as 13 jurisdictions have received initial
electronic case reports for COVID-19 ad more than 18 million COVID-19
case reports have been sent electronically to public health agencies--
each representing a report that a health care provider did not have to
enter manually!
Resources are needed to make improvements in NNDSS and rapid data
submission from States to CDC. For example, state, territorial, local,
and Tribal health department staff serve as disease detectives
contacting and interviewing cases gathering detailed information to
learn how and where they may have become infected--are they part of a
cluster or outbreak, or what co-factors may have led to a more severe
illness? For example, during the Zika response, case investigations
conducted by the local health department identified persons working on
elevators were at increased risk of infection as standing water often
collected in the bottoms of open-air elevator shafts serving as
breeding location for mosquitos. After case investigations and
interviews are conducted, resources are needed to provide those details
to the CDC through NNDSS. Numerous similar examples exist for COVID-19
where health department staff conduct outbreak investigations or
identify clusters from genomic sequencing but are unable to
electronically share those data with CDC's NNDSS due to agency
infrastructure shortages. Additionally, right now, there are multiple
jurisdictions who have the desire to provide more detailed COVID-19
case information to CDC, but don't have the data work force and
resources to update file structures and data processes to submit those
data.
We need an electronic lab test ordering and result process that
supports the collection of information to launch a rapid public health
response. Seamless electronic communication is critical--a health
department forced to sort through mailed or faxed lab reports will not
be able to respond promptly or adequately to an emerging threat.
Investments here have also shown early success. Electronic laboratory
reporting (ELR), which has now been implemented across the country,
formed the backbone of our case surveillance for COVID-19, enabling
States, localities, territories, Tribes and the Federal Government to
have timely information to identify cases, where those cases lived, and
basic information about their age. Without ELR we would never have been
able to conduct control measures and know what was happening in
virtually every jurisdiction. In many jurisdictions this information is
automatically uploaded and ready for analysis within a day of the
result.
We need improvements to our electronic vital records systems to
ensure real-time transmission of birth and death data for statistical
and--critically during a pandemic--surveillance purposes. We must make
sure systems are interoperable so physicians, coroners, medical
examiners, and funeral directors can seamlessly report deaths through
their existing electronic records systems--eliminating delays and
reducing errors.
Standards-based interoperability will also help identify threats as
they emerge. As it stands, nearly one third of all emergency department
visits are not reported to the National Syndromic Surveillance Program,
which helps detect, monitor, control and prevent emerging diseases.
These five pillars are interwoven, and each plays a key role in
moving the United States from an outdated and burdensome patchwork of
systems to a 21st Century public health data infrastructure that
provides complete, accurate, and instantaneous data. Again, DMI is an
enterprise-wide approach, which will support widespread and rapid
access to public health data for all public health programs at all
levels of government for all diseases and conditions. Just like a
rising tide lifts all boats, a public health data superhighway improves
all public health programs. Public health needs a coordinated and
integrated approach to using data to deliver on mission, serve the
public, and steward resources while respecting privacy and
confidentiality. Currently, CDC has many siloed public health
surveillance systems, many of which are not interoperable, which
results in duplicated and redundant data entry. DMI will help break
down those siloes and ensure all systems are integrated and
interoperable.
Equally important is a skilled workforce that includes
epidemiologists, public health informaticists, data scientists, and
other experts--all of whom work together so that the public health
surveillance system is capable of detecting and monitoring current
threats and ready for the next pandemic. The Administration has
committed to strengthening our Nation's public health workforce,
including epidemiologists and data scientists and we urge the committee
to continue to provide resources towards this goal. This is an
important step forward to grow and build the next-generation public
health workforce and we hope to see the committee support continued
funding to sustain this progress.
Working hand-in-hand with DMI, CDC's newly established Center for
Forecasting and Outbreak Analytics (CFA) will facilitate the use of
data, modeling, and analytics to improve pandemic preparedness and
response. The CFA is already doing critical work, including helping to
inform government response to the spread of the Omicron variant of
COVID-19 in late 2021.
We do not have a science problem; we have a resource problem. The
core data systems for a national infrastructure already exist they must
be modernized and maintained so they can keep pace with new technology.
CSTE applauds President Biden for proposing an unprecedented
investment in CDC through his discretionary budget request. The
President requested $10.675 billion for CDC. As part of this
significant and well-warranted funding proposed increase, the President
seeks to ``prioritizes investments that will modernize public health
data collection, increase capacity to forecast and analyze future
outbreaks, and operationalize lessons learned from the COVID-19
response.'' We also support the President's proposal to invest $81.7
billion in mandatory funding toward pandemic preparedness efforts,
including $28 billion for CDC to invest in critical efforts, including
public health infrastructure and DMI. We encourage Congress to make
this proposal a reality.
To make our public health systems work now, and in the future, we
need regular, sustained annual funding for our public health
surveillance. We respectfully request the subcommittee provide funding
of at least $250 million for DMI and $50 million for CFA at CDC in
Fiscal Year 2023.
Thank you.
[This statement was submitted by Janet Hamilton, MPH, Executive
Director, Council of State and Territorial Epidemiologists.]
______
Prepared Statement of the Council on Social Work Education
department of health and human services
--$25 million for the Minority Fellowship Program (MFP) at Substance
Abuse and Mental Health Services Administration
--Heath Resources and Services Administration (HRSA):
--$225.8 million for HRSA's Behavioral Health Workforce Education
and Training (BHWET) grant program;
--$55.014 million for Scholarships for Disadvantaged Students;
--$82 million for the Geriatrics Workforce Enhancement Program
(GWEP) and the Geriatrics Academic Career Award (GACA)
--$15 million for continued support of a demonstration program to
strengthen the mental and substance disorders workforce;
--$20 million for continued support of the Loan Repayment Program for
Substance Use Disorder Treatment Workforce
--$49.048 billion for National Institutes of Health (NIH)
--NIH report language on Office of Behavioral and Social Sciences
Research working groups
department of education
--$13,000 for the maximum individual Pell Grant;
--Experimental sites for paid internships for social work students
CSWE is a nonprofit national association representing over 900
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 (FY) 2023 appropriations process. Pressing societal
challenges and public health challenges like the twin pandemics of
CoVID-19 and systemic racism, 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 FY 2023
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. We respectfully ask for your support of these
requests during the FY 2023 appropriations process.
Substance Abuse and Mental Health Services Administration: $25
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 urges the committee to
include $25 million for the MFP in FY 2023.
CSWE requests the following report language be included in the FY
2023 Labor-H report: The Committee believes that among the many
consequences of COVID-19, the increasing rates of burnout facing the
mental and behavioral health workforce has negatively impacted the
resilience of the Nation's public health infrastructure. The pandemic
has laid bare the need to strengthen the public health workforce
pipeline and the need to provide educational opportunities to all who
wish to pursue a career in mental and behavioral health care. The
Committee urges the Minority Fellowship Program in the Substance Abuse
and Mental Health Services Agency to explore ways in which to expand
program eligibility, particularly for students who fall under the
Temporary Protected Status (TPS) and Deferred Action for Childhood
Arrival (DACA) programs. These students, the majority of whom have
lived most of their lives in the United States, are an invaluable
resource to bolster our public health infrastructure and mental and
behavioral health care workforce.
Health Resources and Services Administration: $225.8 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 Year2022 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
pandemic, 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. Social workers
represent the most diverse health profession in the Nation and as
efforts are taken to bolster the public health infrastructure, social
workers represent a model for continued workforce growth and diversity.
As the Nation's demand for well-equipped behavioral health-care
providers continues to grow, we hope you will support $225.8 million
for BHWET in FY 2023.
--$55.014 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 health care for seniors.
--$15 million for continued support of a demonstration program to
strengthen the mental and substance disorders workforce.
--$20 million for continued support of the Loan Repayment Program for
Substance Use Disorder Treatment Workforce.
National Institutes of Health (NIH): $49 billion in FY 2023 for the
National Institutes of Health. CSWE appreciates 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. Social and structural determinants
of health play a large role in the health disparities that plague
society. Social factors play a major role in people's health and as a
result NIH needs to fund behavioral and social science research that
tests innovations in the design of health care and integrate social
care into health care and health care into social services. In
addition, research must be funded that tests the effectiveness of these
integrated services. NIH should expand research opportunities in this
area to provide meaningful, comprehensive, and long-lasting
improvements in health care delivery.
CSWE requests the following report language be included in the FY
2023 Labor-H report: The Committee believes that a more robust and
focused NIH commitment to behavioral and social science research and
training would yield significant improvements to the Nation's health
due to the important connections between social and physical conditions
and health. Many of the leading causes of health disparities in our
Nation are related social and structural determinants of health like
race, income, access to care, housing, and employment. In the shadows
of the COVID-19 pandemic, addressing these health disparities continues
to be key challenge in our efforts to improve health across all
populations. The 2019 Consensus Study Report from the National
Academies of Science, Engineering, and Medicine entitled ``Integrating
Social Care into the Delivery of Health Care'' highlighted the growing
need to understand how social factors play a major role in people's
health. The Committee provides $10,000,000 for the Office of Behavioral
and Social Sciences Research for grants, Notices of Special Interest
(NOSI), and other funding mechanisms to support this work and urges NIH
to consider how its programs in health services, translational,
intervention, and implementation research are inclusive of social
determinants of health research and researchers.
Department of Education: $13,000 in FY 2022 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 the Public Service Loan Forgiveness (PSLF) Program.
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.
--Support for Paid Internships for Social Workers. Social work
students are required to participate in at least 400 hours of
field experience and at the graduate level masters students are
required to complete at least 900 hours. These experiences are
critical to ensuring the development of a professional social
work workforce. Yet many times these experiences are unpaid.
CSWE requests the following report language be included in the
FY 2023 Labor-H report: The Committee directs the Department of
Education to consider the feasibility of using its Experimental
Sites authority for a pilot to use Federal Work Study and other
financial aid funding to support social work students involved
in internships and field experiences. The Department is
directed to provide a report to the Committees on Education and
Labor, and on Appropriations of the House of Representatives
and on the Committees on Health, Education, Labor, and Pensions
and on Appropriations of the Senate on its plan for an
Experimental Sites Initiative. Point of Contact: Otto Katt,
[email protected].
______
Prepared Statement of the Creutzfeldt-Jakob Disease Foundation
Chairwoman Murray, Ranking Member Blunt, and Members of the
subcommittee:
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). We request
Congressional support in increasing the Prion Disease Surveillance
appropriation through the CDC, Emerging and Zoonotic Infectious
Diseases, by $1 million, for a total of $7.5 million.
overview
Creutzfeldt-Jakob Disease (CJD), is a rare, 100 percent fatal,
degenerative brain disease that causes rapidly progressive dementia.
CJD is transmissible and presently has no treatment or cure.
Approximately 1 in 6,200 individuals will die from this disease in
their lifetime; however, the unreported and undiagnosed number of cases
remains unclear.
CJD is caused by the presence of an abnormal ``prion'' protein in
the brain and is known as a prion disease. CJD/Prion disease
surveillance receives modest support through the Centers for Disease
Control and Prevention (CDC). We need your support to strengthen and
continue the coordination of CJD and other prion disease surveillance
activities and to assure the safety of the American public.
variant cjd (vcjd), and bovine spongiform encephalopathy (bse)
One form of this disease in humans, variant CJD (vCJD), is known to
be caused by ingesting beef contaminated with Bovine Spongiform
Encephalopathy (BSE), 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
disease surveillance and awareness to prevent further dissemination of
vCJD. The two most recent cases of vCJD in Europe are believed to be
due to occupational exposure and several cases of vCJD have been
transmitted between individuals via blood transfusions. Hence, vCJD
risk is not confined to eating contaminated food.
chronic wasting disease (cwd)
Emerging laboratory data show that Chronic Wasting Disease (CWD), a
naturally occurring prion disease of deer and elk, 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 definitively diagnose human prion diseases, determine their
origin, and determine whether the spread of CWD found in elk and deer
in 30 States in the U.S. and in 4 Canadian provinces has become a human
risk. A study in progress has reported 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 among its own species and the disease
transmits by contact and through contaminated environment, including
soil and plants, in free ranging and farmed animals. Additionally,
multiple lines of experimental evidence indicate that sheep and cows
are susceptible to CWD. Since CWD has been proven to cross several
species barriers, this opens up the possibility of transmission to
humans as well, either directly by eating contaminated venison or
indirectly through infected domestic animals. Continued prion disease
surveillance, particularly through examination of human brain tissue,
is imperative to evaluate whether CWD has or can spread to humans.
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.
Prion disease surveillance is funded at $6.5 million/year. That
figure has increased by just $500,000 over the past 7 years, despite
increasing costs of surveillance. Expenses have since risen for the
resources required to perform adequate surveillance such as increasing
number of cases as expected by the aging American population,
increasing autopsy costs over time, screening for COVID19, and taking
extra precautions necessary for COVID19. Without an increase in funding
commensurate with these increased expenses, surveillance will be
compromised.
Request:
We ask for Congressional support in increasing prion disease
surveillance's appropriation by $1 million, for a total of $7.5
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 prion surveillance. Reduction of
funding or maintaining static 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 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 CWD among deer
and elk, and explore whether CWD could spread to humans. Additionally,
increasing prion disease surveillance in the U.S. increases
surveillance at the National (CDC) and state (state public health
departments) levels, which has been severely affected by competing
concerns within the CDC division (e.g., COVID19).
Background:
The NPDPSC is funded entirely by the CDC from funds allocated by
Congress. The CDC traditionally keeps approximately half of the
appropriation for epidemiologic surveillance projects and funding prion
disease surveillance at the state level.
Increasing the appropriation from $6.5M to $7.5M will allow the
NPDPSC to persist and continue to develop more efficient detection
methods while providing an acceptable level of prion disease
surveillance. Acceptable national surveillance is not possible at a
lower level of funding. The requested $1M addition to the appropriation
(total of $7.5M) would enable the NPDPSC to maintain appropriate
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, what risk this poses
to public health (e.g., transmission risks from human to human).
The National Prion Disease Pathology Surveillance Center is the
only laboratory-based 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 require costly
replacement of contaminated surgical equipment.
The NPDPSC also plays a decisive role in resolving suspected cases
or clusters of cases of food-acquired and medically transmitted prion
disease that are often magnified by the media, stirring intense public
alarm. To date, the NPDPSC has examined approximately 8,000 suspected
cases of suspected prion disease and has definitely confirmed presence
and type of prion disease in more than 4,800 cases.
The NPDPSC is 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 UK, the European Union, and Japan, does
not have a sufficiently robust animal prion disease surveillance
system.
The NPDPSC offers assurances, to countries that import (or are
considering importing) meat from the United States, that the U.S. is
free of indigenous human cases of ``mad cow'' disease. In the past,
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.
Since its inception in 1997, the NPDPSC has collected and stored
approximately 8,000 brains and many more samples of cerebrospinal fluid
from cases of suspected prion disease, making it the largest prion
disease biobank in the world. Increased funding is required to continue
to preserve these precious specimens for future international research
efforts as well as to serve as reference materials to evaluate
potential emerging prion diseases (e.g., chronic wasting disease).
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 Cure Alzheimer's Fund
Chairwoman Murry, Ranking Member Blunt, and members of the Senate
Labor, Health & Human Services, Education, and Related Agencies (LHHSE)
Appropriations subcommittee, I am Tim Armour, President, and CEO of
Cure Alzheimer's Fund. I want to thank Congress for its ongoing
commitment to, and support for, sustained and continued 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 $226 million in Fiscal Year 2023 above the final
enacted amount for Fiscal Year 2022 for Alzheimer's disease research at
the NIH.
Additionally, Cure Alzheimer's Fund respectfully requests at least
an additional $60 million in total appropriations for the Brain
Research through Advancing Innovative Neurotechnologies (BRAIN)
Initiative. Because of the past investments this subcommittee has made
in the BRAIN Initiative, and with its interest in increasing early
detection and diagnosis of Alzheimer's disease, the tools developed by
the BRAIN Initiative are becoming ever more important to the search for
a cure for 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 in 2004, Cure Alzheimer's Fund has invested more than $145
million in research through 615 grants across the United States and
internationally.
In my past testimony, I have highlighted several areas of novel
research that Cure Alzheimer's Fund has supported. Many of these are of
interest to Congress as well as shown through the Report Language
accompanying the Appropriations bills. Things like Diabetes, Herpes,
and the Exposome, and their impacts on the development of Alzheimer's
disease are some of the areas of research that were highlighted in the
Fiscal Year 2022 Appropriations Bill Report Language.
These are all areas in which Cure Alzheimer's Fund has long
supported early-stage research.
As far back as 2010, Cure Alzheimer's Fund was investing in
research into the relationship between Alzheimer's disease and
Diabetes.
Research conducted by Sam Gandy at the Icahn School of Medicine at
Mount Sinai was focused on the gene for a protein called SorSC1. SocSC1
has been independently linked to both Alzheimer's disease and Type II
Diabetes. Cure Alzheimer's Fund research focused on better
understanding the potential link between Alzheimer's disease and
Diabetes.
https://curealz.org/research/translational/studies-of-novel-ad-
genes/brain-structure-abeta-metabolism-and-behavior-in-mice-deficient-
in-diabetes-and-alzheimers-associated-sorcs1/.
Cure Alzheimer's Fund is continuing this line of investigation by,
among other efforts, supporting research in the lab of Dr. Miranda Orr
at Wake Forest University exploring the impact of a high-fat diet and
consequent metabolic syndrome on the onset of cellular senescence in
neurons containing Alzheimer's tau pathology.
In 2015, Cure Alzheimer's Fund supported research into the
hypothesis that beta amyloid plaques form as part of the brain's immune
response to pathogens like Herpes Simplex Virus. This was the beginning
of research into the theory that Beta-Amyloid is part of the innate
immune system; research that I have highlighted often in my submitted
testimony.
https://curealz.org/research/translational/studies-of-tau/abeta-
expression-protects-the-brain-from-herpes-simplex-virus/.
This early-stage, novel theory research supported by Cure
Alzheimer's Fund led to two journal articles published in Neuron in
2018. These journal articles further established the link between
pathogens like Herpes and Alzheimer's disease.
https://curealz.org/news-and-events/evidence-of-the-link-between-
alzheimers-and-herpes-continues-to-grow/.
https://www.cell.com/neuron/fulltext/S0896-6273(18)30526-9.
https://www.cell.com/neuron/fulltext/S0896-6273(18)30421-5.
Dr. Rob Moir at Massachusetts General Hospital originally had the
idea that Beta Amyloid was part of the innate immune system and is an
antimicrobial.
Although Dr. Moir passed away in 2019, the research spurred by his
idea continues today, and is an important area of research for Cure
Alzheimer's Fund, this subcommittee, and Alzheimer's disease research
in general.
In my submitted testimony last year, I highlighted the research
supported by Cure Alzheimer's Fund that is focused on the role
particulate matter and pollution play in the development of Alzheimer's
disease. These exposome influences are important to not only better
understanding Alzheimer's disease pathology, but also to understanding
environmental justice and social determinants of health and how the air
we breathe can influence our cognitive health.
https://curealz.org/research/translational-research/air-pollution-
and-app-processing/.
The Fiscal Year 2022 Appropriations Bill Report Language also
referenced increasing and improving diversity in clinical trials,
improving diagnostic tools, and creating new tools for measurement of
cognitive impairment.
Although the early-stage research supported by Cure Alzheimer's
Fund is not focused specifically on these areas, the work by Cure
Alzheimer's Fund to diversify research and brain banks samples will
inform these efforts.
Knowing that having diversified samples available to researchers is
vital to not only the work Cure Alzheimer's Fund is supporting, but
also for other researchers working on other dementias and neurological
conditions, Cure Alzheimer's Fund is working with the Brain Donor
Project on a specific project to increase and improve outreach to
underrepresented populations to increase brain donations. This project
will help to create a more diversified brain bank with samples that
will be available to all researchers working on all neurological
conditions.
https://curealz.org/research/foundational/biomarkers-diagnostics-
studies-of-risk-resilience/targeted-recruitment-of-underrepresented-
americans-for-brain-donation-registration/.
The Fiscal Year 2022 Appropriations Bill Report Language also
referenced the relationship between Alzheimer's disease and Down
syndrome. These are also areas in which Cure Alzheimer's Fund has been
supporting research. As this subcommittee is aware, individuals with
Down syndrome are virtually certain to have Alzheimer's disease
pathology and clinical symptoms by the time they are 50 years old
because their genetic trisomy leads to overproduction of the amyloid
precursor protein.
In 2014, Cure Alzheimer's Fund hosted a webinar focused on the
relationship between Down syndrome and Alzheimer's disease.
https://curealz.org/news-and-events/alzstream-webinar-alzheimers-
and-down-syndrome/.
Recent public discussion of the anti-amyloid immunotherapy Aduhelm
brought renewed attention to the importance of including the Down
syndrome community in research on Alzheimer's disease. Cure Alzheimer's
Fund recently funded work in the lab of Dr. William Mobley and the late
Dr. Steven Wagner at the University of California San Diego testing an
anti-amyloid oral therapeutic in a mouse model recapitulating both Down
syndrome and amyloid pathology; this therapeutic has received
significant funding from the NIH Blueprint program and will enter
clinical trials in the next 9 months. It is of high potential to the
Down syndrome community.
Cure Alzheimer's Fund has been supporting the research of Beth
Stevens at Boston Children's Hospital. It may seem strange for an
Alzheimer's disease organization to be supporting research at a
pediatric hospital, but it is important work with insights into several
neurological conditions including Alzheimer's disease and autism.
Dr. Stevens is researching Microglia and the role Microglia play in
synapse development and elimination. Microglia plays an important role
in pruning synapses in early life. During brain development,
insufficient synapse pruning can lead to autism spectrum disorders.
However, overaggressive synaptic pruning in older adults can lead to
cognitive decline.
https://curealz.org/researchers/beth-stevens/.
https://curealz.org/research/translational/studies-of-innate-
immune-pathology/early-role-of-microglia-in-synapse-loss-in-alzheimers-
disease/.
This research shows how the drivers of neurological conditions are
interrelated and that research into one condition could provide insight
and answers to other conditions. This research also shows the value of
the sustained and continuing investment in, and commitment to,
Alzheimer's disease research made by this subcommittee. The commitment
demonstrated by this subcommittee is providing NIH with the resources
necessary for it to be able to invest in several novel targets
simultaneously. And as I have described in this testimony, many of
these novel targets are the result of early-stage research supported by
private organizations like Cure Alzheimer's Fund.
Groups such as Cure Alzheimer's Fund can provide vital initial
research funding allowing researchers to prove their concepts and
compile initial data sets. With this information, researchers are then
able to approach NIH for larger-scale and longer-term funding. It is a
great example of public-private partnerships that are proving to be
very important to advancing Alzheimer's disease research, as well as
other neurological conditions.
This is only possible because of the commitment to Alzheimer's
disease research shown by this subcommittee. Without adequate
resources, NIH would not be able to pursue these different avenues of
research; which are stated areas of interest to this subcommittee and
Congress.
It would be disheartening, with all the advancements that have been
made in the last 10 years, if NIH was not able to continue its broad-
based research portfolio because of limited research funding. As
progress is being made toward the goals of the National Alzheimer's
Project Act, it is even more important for this subcommittee to
continue to demonstrate its commitment to Alzheimer's disease research
funding at NIH.
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 $226 million above the
final enacted level in Fiscal Year 2022 for Fiscal Year 2023 for
Alzheimer's disease research at NIH, and at least an additional $60
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.
Respectfully Submitted May 11, 2022.
[This statement was submitted by Timothy Armour, President and CEO,
Cure Alzheimer's Fund.]
______
Prepared Statement of Dave Purchase Project
Chairwoman Murray, Ranking Member Blunt, and members of the
subcommittee, my name is Dr. Paul LaKosky and I serve as the Executive
Director of Dave Purchase Project, the North American Syringe Exchange
Network (NASEN), and the Tacoma Needle Exchange in Tacoma, Washington.
I am pleased to submit testimony on behalf of these organizations and
as a member of a large coalition of public health, HIV, viral
hepatitis, and harm reduction organizations to urge Congress to
appropriate $150 million for the Infectious Diseases and the Opioid
Epidemic program at the Centers for Disease Control and Prevention
(CDC) at the Department of Health and Human Services (HHS) to save
lives and address the overdose crisis by supporting and expanding
access to syringe services programs (SSPs).
Named in honor of its late, pioneering founder, Dave Purchase, Dave
Purchase Project houses the Nation's first legal syringe services
program, created in 1988 at the height of the HIV epidemic in the
United States. The program seeks to stop the spread of bloodborne
pathogens, such as HIV and hepatitis C, among people who use drugs and
to reduce the harm to individuals and communities associated with drug
use. Although initially intended to address the spread of HIV, Dave
Purchase Project now provides national leadership in its response to
the opioid crisis. It also facilitates syringe services in Tacoma and
throughout Pierce County, Washington.
Dave Purchase Project also houses the North American Syringe
Exchange Network (NASEN). In 1992, NASEN formed to support syringe
services programs (SSPs) and to expand the network of organizations and
individuals that advocate for these life-saving programs. NASEN is the
first and largest supplier of low-cost harm reduction resources in the
US. In 2021, NASEN acquired and distributed approximately $18 million
in harm reduction resources to the approximately 400 SSPs in the US,
Puerto Rico, and the US Virgin Islands. NASEN also provided support
valued at $20,000 to 16 newly emerging and/or struggling SSPs through
start-up grant packages. As the Executive Director of these
organizations, I am familiar with providing direct services to people
who use drugs in Washington State, and with the significant gaps and
need for resources and services nationwide.
The United States continues to experience a public health emergency
related to overdose, with over 106,000 overdose deaths counted between
November 2020 and November 2021 and deaths increasing by an alarming 45
percent since January 2020. According to provisional CDC data, overdose
deaths continue to accelerate in Washington, increasing by 28 percent
in the latter half of 2021.
Overdose deaths have increased more dramatically among Black people
and communities of color. In 2020, Black people had the largest
percentage increase in overdose mortality--48.8 percent. The Hispanic
or Latino community experienced a 40.1 percent increase in overdose
deaths as compared to white people who experienced a 26.3 percent
increase. American Indians and Alaska Natives experienced the highest
rate of overdose mortality of all ethnic groups in 2020, a mortality
rate 30.8 percent higher than that of white people.
SSPs are an essential component of preventing overdose deaths.
Tacoma Needle Exchange provides sterile syringes, which helps prevent
the spread of infectious diseases such as HIV, as well as services such
as opioid overdose prevention and awareness training, naloxone training
and distribution, wound care, and referrals for medication assisted
treatment and other medical and social services. Our outreach staff
meets people where they are and helps them address their needs in the
safest and healthiest way possible, free of judgement and stigma.
The following is but one example of what we do, and why we do it.
In 2020 and 2021, in response to the housing crisis, we increased our
outreach to individuals living houseless in encampments in Pierce
County, WA. One of our outreach workers was able to connect to a
disabled veteran who was experiencing active addiction and had been
living houseless for several years. He was in rough shape as a result
of an assault and had open, infected, wounds that required immediate
attention. Our outreach worker cleaned and dressed the wounds and was
subsequently able to get this individual a new tent in a safe location.
He then referred the individual to our peer care navigator who was able
to get the individual into medically assisted treatment for his opioid
use disorder. The navigator was also able to secure a place to live for
this individual in a tiny home village for veterans.
SSPs are the most effective way to get naloxone into the hands of
people who use drugs and who are most likely to be at the scene of an
overdose. In 2020/2021, our team distributed approximately 19,000 doses
of naloxone and 1,722 overdose reversals were reported back to us (and
many more occurred that went unreported). People who use drugs are
essential partners in preventing overdose fatalities and are best
reached by SSPs. In fact, more than 99 percent of the reported overdose
reversals were performed by community members--other drug users, family
members, friends, bystanders--and not by first responders. With
additional resources, SSPs could reach more people with naloxone, which
would help reduce the dramatically increasing number of overdose
deaths.
Congress must respond to the overdose crisis, as well as work to
prevent and reduce infectious diseases related to drug use, such as HIV
and hepatitis C, by supporting and expanding access to SSPs. Infectious
diseases associated with opioid and other drug use have dramatically
increased across the U.S. Since 2010, the number of new hepatitis C
infections has increased by 380 percent. Outbreaks of viral hepatitis
and HIV among people who inject drugs continue to occur nationwide. The
CDC has documented over 30 years of studies that show that SSPs reduce
overdose deaths and infectious diseases transmission rates as well as
increase the number of individuals entering substance use disorder
treatment. These studies also confirm that SSPs do not increase illicit
drug use or crime and save money.
SSPs are among the only health care services trusted and used by
people who use drugs and so can effectively engage this highly
stigmatized population. SSPs help protect the community (including
first responders) by ensuring safe disposal of syringes, reducing rates
of infectious diseases, and can help providing a pathway to effective
mental health and substance use treatment and other medical care.
Unfortunately, the Nation has insufficient access to SSPs and the
COVID-19 pandemic has decreased access to these life-saving services
when the need for services has increased dramatically. NASEN's March
2020 survey of 173 SSPs--almost 40 percent of SSPs nationwide--showed a
43 percent decrease in SSP services as a result of COVID-19. A similar
Drug Policy Alliance survey showed that 91 percent of respondents
experienced an increase in clients in 2020. Funding shortfalls and
increased need for services have persisted into 2022. As a result of
increasing need coupled with decreased, limited resources, SSPs cannot
reach the millions of people who could benefit from their life-saving
services, including overdose prevention and access to critical health
care.
Federal funding would expand access to critical and effective SSP
programs. NASEN's own data show that there are only approximately 400-
600 SSPs operating nationwide. The United States could easily use as
many as 4000 programs--7-10 times the number in existence now. NASEN
routinely provides program support packages with essential harm
reduction supplies to organizations wishing to start SSPs. We
consistently have a wait list of 25-30 organizations seeking
assistance, no matter how many support packages we distribute.
A study that assessed the startup costs of an individual program
estimated that it would cost (in 2020 dollars) $490,000 for a small
rural program and $2.1 million for a large urban program, resulting in
an average start-up cost of $1.3 million per program. Based on these
numbers, the requested funding could provide modest increases to
currently operating SSPs to help address funding shortfalls and help
expand the number of SSPs nationwide.
Finally, expanding access to SSPs would reduce health care costs,
including for infectious diseases treatment. Hepatitis C treatment can
cost more than $30,000 per person, while HIV treatment can cost upwards
of $560,000 per person. Averting even a small number of cases would
save millions of dollars in treatment costs in a single year.
The Infectious Diseases and Opioid Epidemic Program at CDC helps to
eliminate infections related to injection drug-use and improve their
prevention, surveillance, and treatment. It also strengthens and
expands access to SSPs. In FY 2021, CDC provided technical assistance
to help ensure high-quality, comprehensive services and best practices
for SSPs.
If Congress were to provide $150 million in FY23 funding, CDC could
significantly expand SSPs at this critical time to help prevent
overdose deaths, the spread of HIV and viral hepatitis, and connect
people to life-saving medical care. It is urgent that Congress respond
now and forcefully to this crisis or more lives will be lost to
overdose and countless people will continue to contract infectious
diseases that seriously compromise their personal health as well as the
public health, creating long-term costs for all.
Finally, on a personal note, I speak to you as a public health
researcher and SSP supporter and provider, but also--and more
importantly--as the older brother of someone who has struggled with
addiction his entire adult life. My brother overdosed on fentanyl, but
thankfully survived. Because he survived, in January 2022, after many
months of transient homelessness and estrangement from my family, my
brother entered a residential treatment facility for his substance use
disorder. He stated he was tired of the isolation, the homelessness,
and the constant feeling that he was vulnerable and worthless. Mostly,
he said, ``I miss the family.'' This is not the first time he has been
in treatment--and likely not the last. But with the support he receives
from his treatment team, his recovery community, and my family, we see
improvements in his personality and his outlook on life and, in
fleeting moments, we catch glimmers of the sweet, gullible, brother he
is when he is not using meth.
Thank you for your time and consideration of my testimony. Please
do not hesitate to contact me, Jenny Collier at
[email protected], or Bill McColl at
[email protected] if you have questions or need additional
information.
[This statement was submitted by Paul LaKosky, Ph.D., Executive
Director, Dave Purchase Project, the North American Syringe Exchange
Network, Tacoma Needle Exchange, and coalition partners.]
______
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, 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. COVID-19
has illustrated how vital the investments from this subcommittee are
for strengthening a health care 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. Reflecting Duke
Health's mission of ``Advancing Health Together,'' this written
testimony outlines Duke Health's biomedical research and health care
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. In fiscal year (FY) 2023, Duke Health supports a program
level of at least $49.048 billion for the NIH base budget, which would
represent an increase of $4.1 billion over the comparable FY 2022
funding level (an increase of $3.5 billion or 7.9 percent in the NIH
appropriation plus funding from the 21st Century Cures Act for specific
initiatives). Duke Health strongly urges lawmakers to ensure that any
funding for the new Advanced Research Projects Agency for Health (ARPA-
H) supplement our $49 billion recommendation for NIH's base budget,
rather than supplant the essential foundational investment in the NIH.
Duke Health appreciates the inclusion of $52 million in the FY 2022
Consolidated Appropriations Act (Public Law 117-103) for the National
Institute of Allergy and Infectious Disease to support Regional
Biocontainment Laboratories (RBLs) for research, operation support, and
training new researchers in biosafety-level (BSL) 3 practices.
Continued Federal investment in the RBLs will strengthen the Nation's
research on biodefense and emerging infectious disease agents and
improve our response to future public health emergencies. For FY 2023,
Duke Health respectfully requests $52 million to be shared among the 12
research institutions to conduct research on developing tests for new
antiviral compounds, vaccines, and point of care tests; support
operations costs and purchase of equipment to keep the laboratories up
to date and safe; and support personnel trained in biosafety level 3
and 2 practices to ensure the highest level of expertise is brought to
bear on these research needs that are critical for the security of the
U.S.
Duke Health also appreciates the Committee's support for the
National Center for Advancing Translational Sciences (NCATS) Clinical
and Translational Science Awards (CTSA) Program. In FY 2023, Duke
Health urges the Committee to consider urging NCATS to make
supplemental funding available to Minority Serving Institutions that
partners with CTSAs to incentivize these partnerships. We also ask the
Committee to urge NCATS to increase the cap for CTSA Program Hubs.
Finally, Duke Health asks the subcommittee not to include language
that would limit the use of nonhuman primates in research, which 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 and public health defense systems are critical. Duke
Health urges the subcommittee to provide at least $11 billion for the
CDC in FY 2023. Within the CDC, Duke Health also requests the Committee
consider including $10 million for the Sickle Cell Disease (SCD)
surveillance program within the National Center for Birth Defects and
Developmental Disabilities' Blood Disorder Division. Additional Federal
funding for CDC's SCD Data Collection Program is also necessary 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.
nih and cdc firearm violence research
Duke Health is grateful for investments from Congress to support
firearm violence research. As outlined in the FY 2023 NIH Budget
Justification to Congress, violence is a widespread public health
problem that has profound impacts on lifelong health, opportunity, and
well-being. Duke Health asks the Committee to consider $35 million for
the CDC and $25 million for the NIH to conduct public health research
into firearm morbidity and mortality prevention. We also encourage
Congress to explore opportunities for building out and further
supporting this research at all other appropriate agencies, to ensure
that federally funded research can explore the full scope of this
public health issue.
health resources and services administration (hrsa)
Duke Health appreciates the subcommittee's continued investment in
Title VII health professions training programs and Title VIII Nursing
Workforce Development programs at HRSA. These programs help ensure a
well-trained pipeline of health professionals to meet the increasing
health needs facing the United States. These programs also increase the
diversity and cultural competency of our Nation's health care
workforce, which is increasingly important as the U.S. population grows
and becomes more diverse. For FY 2023, Duke Health respectfully
requests that the subcommittee provide $980 million to Title VII health
professions programs, and $530 million to Title VIII Nursing Workforce
Development 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 health care services to rural and
underserved communities. Duke Health also supports the president's
proposal to provide support for programs to address clinician burn-out
and well-being, as authorized under Title VII and established in the
recently enacted Dr. Lorna Breen Health Care Provider Protection Act.
Duke Health urges the subcommittee to provide $23 million in FY
2023 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, 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. Umbilical cord blood units have the advantage of use
without full matching which specifically meets the needs of patients of
non-Caucasian ancestry. These patients have the lowest chance of
finding a complete match, but can still have access to transplantation
therapy using a partially matched banked umbilical cord blood donor
unit.
Duke Health respectfully requests the subcommittee provide $37
million for the C.W. Bill Young Cell Transplantation Program through
the NCBI at HRSA in FY 2023. The Carolinas Cord Blood Bank (CCCB) at
Duke is a member bank of the NCBI 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 not less than $500
million for the Agency for Healthcare Research and Quality in FY 2023.
AHRQ supports research to improve health care quality, reduce costs,
advance patient safety, decrease medical errors, and broaden access to
essential services. As the lead Federal agency for funding health
services research and primary care research, AHRQ is the bridge between
cures and care, and ensures that Americans get the best health care at
the best value. For example, funding from AHRQ supports patients with
sickle cell disease, 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, particularly through the development and
use of evidence-based decision support tools.
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 FY
2023, Duke Health urges the subcommittee to provide $150 million for
NCTSN, which matches the president's budget request.
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,
fully authorized funding, for the Military and Civilian Partnership for
the Trauma Readiness Grant Program for FY 2023 within ASPR. Originally
known as MISSION ZERO, this critical program provides 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. Building upon FY 2022's initial
investment, 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 2023
_______________________________________________________________________
--Provide $49 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).
--Provide the Centers for Disease Control and Prevention (CDC) with
at least $11 billion to facilitate timely public health
efforts.
--Please provide $6 million for the new Chronic Disease Education and
Awareness Program at CDC.
_______________________________________________________________________
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.
In 1967 at the age of 10, I lost the ability to write with either
hand. Five years later, my father (at the age of 53) and I were
diagnosed with focal dystonia, affecting our hands, which spasm and
twist when we attempt to write. My sister, her son, and my daughter
were later given the same diagnosis. Unlike the others, with every
passing year, my daughter's dystonia began to affect other regions. By
19, she was unable to walk or feed herself. Later that year, she
underwent deep brain stimulation (DBS) surgery which changed her life.
She was later able to return to and graduate from college and now lives
a relatively normal and active life.
I realized at the time of my daughter's diagnosis that I needed to
do more. I became a clinical trial participant at the NIH and
volunteered for any studies that could help researchers in finding a
cure and or better treatments. I also became a passionate advocate for
dystonia research funding.
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).
Most of the dystonia research at NIH is supported by NINDS. NINDS
has utilized several funding mechanisms in recent years to study the
causes and mechanisms of dystonia. These grants cover a wide range of
research including the genetics and genomics of dystonia, the
development of animal models of primary and secondary dystonia,
molecular and cellular studies in inherited forms of dystonia,
epidemiology studies, and brain imaging. We continue to work with the
leadership of NINDS on the recommendations stemming from 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 research 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 several 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
2022. We know firsthand that this will further NIH's ability to fund
meaningful research that benefits our patients.
cdc's chronic disease education and awareness program
We strongly support and thank the subcommittee for support of the
Chronic Disease Education and Awareness Program at CDC. This critical
program would provide a dedicated pool of resources that could be
deployed to support meritorious public health projects with
stakeholders. 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 perspectives
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, 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.
We are grateful to those persons who share their stories with the
DMRF and other dystonia patient groups to help raise awareness of
dystonia. The DMRF was founded in 1976 and since its inception, the
goals 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 Carole Rawson, Vice President of
Public Policy, Dystonia Medical Research Foundation.]
______
Prepared Statement of The Education Trust
On behalf of The Education Trust, a national nonprofit that works
to close opportunity gaps that disproportionately affect students of
color and students from low-income families, thank you for the
opportunity to present testimony on the Fiscal Year 2023 (FY23) Labor,
Health and Human Services, Education, and Related Agencies (L-HHS-ED)
Appropriations bill. We request that the L-HHS-ED bill make substantial
investments in excess of prior, cap-limited years to ensure that
essential education programs have the resources they need to ensure the
greatest impact for students of color and students from low-income
communities.
While there are many programs under your jurisdiction that are
critical to advancing equity, in FY23, The Education Trust is focused
on the following:
--Strengthening the Pell Grant program by increasing the maximum
award to keep pace with inflation, at a minimum, and ideally,
doubling the maximum award.
--Supporting teachers and school leaders by including funding and
language supporting the following:
--ESSA (Every Student Succeeds Act) Title I-A ($18.54 billion);
--Incentives for States and localities to evaluate their education
funding formulas and policies and implement equitable
reforms ($100 million);
--ESSA Title II-A ($3 billion);
--the Teacher and School Leader Incentive Program (TSLIP) ($200
million);
--the Supporting Effective Educator Development Program (SEED)
($140 million);
--HEA (Higher Education Act) Title II's Teacher Quality Partnership
(TQP) grants ($300 million); and
--restoring funding to the School Leader Recruitment and Support
Program (SLRSP) ($40 million).
--Maintain FY22 omnibus report language increasing equity in
advanced coursework.
--Enabling enhanced preparation for teaching candidates at
Historically Black Colleges and Universities (HBCUs) and
Minority-Serving Institutions (MSIs) by allocating at least $40
million in funding for the Augustus F. Hawkins Centers of
Excellence Grant program.
--Developing and strengthening evidence-based student success
programs by allocating $110 million in funding for the Post
Secondary Student Success Grant program.
--Supporting student parents by allocating $500 million in funding
for the Child Care Access Means Parents in School (CCAMPIS)
program.
We urge increased support by the Committee for these critical
programs to help meet the needs of students of color and students from
low-income communities.
Strengthening the Pell Grant Program
The Pell Grant program is the cornerstone of Federal financial aid.
The program benefits over 7 million students annually and continues to
serve as the primary Federal investment designed to allow students from
low-income backgrounds to access higher education. 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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Increase the Maximum Award
The maximum Pell Grant award has failed to keep pace with the
rapidly rising cost of college over the past several decades. 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. Bold action must be taken
to halt and reverse this damaging trend.
We are appreciative of previous increases to the maximum award in
prior appropriations bills, including the $400 increase in the Fiscal
Year 2022 (FY22) omnibus, and we respectfully request that you continue
to annually increase the maximum award amount. It is also worth noting
that nearly 1,200 organizations have gone on record supporting the
doubling of the Pell Grant.
In FY23, Congress should, at minimum, increase the maximum award
upward from $6,895 to keep pace with inflation. It is also time for
Congress to implement an ambitious plan to reverse the downward trend
of Pell's purchasing power through doubling the maximum award,
including expanding the mandatory funding stream, ensuring that the
maximum Pell award covers at least half of the cost of attendance at a
public 4-year institution.
supporting students, teachers, and school leaders
Increase funding for ESSA's Title I-A; ESSA's Title II-A
(Supporting Effective Instruction); the Teacher and School Leader
Incentive Program (TSLIP), the Supporting Effective Educator
Development (SEED) program, HEA's Title II Teacher Quality Partnership
(TQP) grants; incentivize States and localities to evaluate their
education funding formulas and policies and implement equitable
reforms; and maintain FY22 report language supporting increasing equity
in advanced coursework.
The Education Trust, building on the prior $1 billion funding
increase for Title I in the FY22 omnibus, supports another $1 billion
funding increase in FY23 budget for ESSA's Title I-A program. However,
it is important to note that most public education funding is
distributed via State and local formulas. Therefore, any Federal
funding increases of this size should be accompanied by levers that
encourage States and districts to address the inequities inherent in
those formulas. This is a tremendous opportunity to spark systemic
reform of the status quo that sends $23 billion more to predominantly
White school districts than predominantly non-White school districts.
We urge the committee to think boldly about how make the overall
education funding system more equitable, including inserting report
language to that effect, and to include the $100 million designated for
this purpose within the Biden-Harris administration's FY23 budget
request in the L-HHS-ED Appropriations bill.
Furthermore, research and experience show the powerful impact that
teachers and school leaders have on student learning. ESSA's Title II-A
program provides grants to States and districts that can be used to
invest in and develop educators. 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 like TSLIP and SEED,
which are targeted at specific, evidence-based strategies for improving
teacher and school leader effectiveness and increasing educator
diversity. Additionally, HEA's Title II TQP grants, awarded to
partnerships between 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.
Finally, research shows that Black, Latino and Native students,
students with disabilities, and students from low-income families are
underrepresented in advanced programs and courses (gifted and talented,
advanced placement, international baccalaureate, honors courses, dual
enrollment, etc.). We the inclusion of report language included in the
FY22 omnibus that noted that funds under ESEA (Elementary and Secondary
Education Act) may be used to implement open enrollment, automatic
enrollment, and/or universal screening practices; to increase course
access and success; to provide coaching and training for educators; to
purchase materials; and/or cover exam fees for underrepresented
students. The language also encouraged the Department to resume
collecting data on passing rates for all Advanced Placement subject
areas.
Considering the Nationwide attention to the need to invest in
educators, especially as schools work to counteract the negative
impacts of the COVID-19 pandemic, Congress appropriated increases for
most of these programs in FY22: $2.17B for the Title II-A grant, $85M
for the SEED program, and $59.09M for HEA's Title II TQP grants, but
unfortunately cut TSLIP by $27M down from $200M in FY21.
At a minimum, in FY23, Congress should: increase Title I-A;
allocate $100M to incentivize States and localities to evaluate their
education funding formulas and policies and implement equitable
reforms; increase Title II-A, TSLIP, SEED, and TQP beyond FY22 levels:
$18.54B, $3B, $200M, $140M, and $300M, respectively, and maintain
report language supporting increasing equity in advanced coursework.
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
seven-year study, concluded in 2019, 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.
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. Developing strong leaders to build
essential relationships with students and the communities they operate
in is a fundamental necessity to help students finish the learning
currently unfinished due to the COVID-19 pandemic. The SLRSP is a key
lever for seeding the next generation of effective school leader
development programs, promoting equity, advancing ongoing innovation,
and sharing innovative lessons on transformational leadership with the
broader field.
In FY23, Congress should restore funding for the School Leader
Recruitment and Support Program to $40M, the amount included in the
FY23 President's Budget and a moderate increase from what was included
in FY22 Senate Labor-HHS-ED Appropriations bill.
Increase funding for the Augustus F. 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. And while students of color
make up the majority of students in public schools, the diversity gap
for teachers of color still exists across every State. For example,
Virginia has taken steps to address their diversity gap by using their
ARPA (American Rescue Plan Act) funds to ``provid[e] ongoing support to
recruit, hire, and retain a diverse school staff'' including programs
to induct and mentor new teachers of color and targeted student loan
assistance programs for pre-service and in-service teachers of color.
The nationwide impact of HBCUs, MSIs, Hispanic-Serving Institutions
(HSIs), and Tribal Colleges and Universities (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, 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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Considering the importance of these institutions, the increased
needs they experience as result of graduating an outsized portion of
the Nation's teachers of color, and the exacerbated nature of the
current shortage of teachers of color due to the COVID-19 pandemic, we
request that Congress build on the highly appreciated $8M investment
made in the Augustus F. Hawkins Centers of Excellence grant program in
the FY22 omnibus. Increasing Congress' investment 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. Finally, the FY23 President's
Budget proposal recommended continued and additional funding for the
program, and a recent House Dear Colleague letter in support of
increasing funding to the program to $40 million garnered 34 signatures
and is circulating in the Senate.
In FY23, Congress should fund the Augustus F. Hawkins Centers of
Excellence Grant Program at $40M.
supporting college students
Fund the Post Secondary Student Success Grant Program
Despite the gains made in high school graduation rates over the
past several decades, the fact remains that only six in 10 students
earn a college degree after 6 years of undergraduate study, and Black
and Hispanic individuals have a lower rate of degree attainment than
their White and Asian-American peers. The COVID-19 pandemic has
exacerbated this problem: college enrollment has declined by 5.1
percent across the board since spring of 2020. These challenges present
the possibility of long-term negative effects on students, their
families, state and national economies, and the country.
Congress, with the support of 14 organizations including Ed Trust,
included a $5 million dollar investment in Post Secondary Student
Success Grants in the FY22 omnibus. That is a positive development that
we look forward to helping the Department implement, but we will need
much more to reverse these damaging trends. Prior proposals from the
Biden administration and both chambers of Congress understood the size
and scope of the problem of low college completion rates, and we hope
the committee will revisit those when deciding how much to invest
moving forward. The FY23 President's Budget proposal included a request
for $110M for this concept, as did a recent House Dear Colleague letter
that garnered 26 signatures and is circulating in the Senate. We
support that funding level for this appropriations cycle.
In FY23, Congress should fund the Post Secondary Student Success
Grant Program at $110M.
Fund the Child Care Access Means Parents in School (CCAMPIS) Program
Over 20 percent of undergraduate students are parents of dependent
children, and within that cohort, 1.7 million are single mothers. As
detailed further in this letter from 51 organizations in support of
this funding ask, including Ed Trust, increasing the funding for
CCAMPIS would provide child care support for approximately 100,000 more
student parents, giving them access to the child care services they
need to get to and through college. This population is increasing year
after year, and in a recent survey of over 20,000 student parents, 70
percent indicated their current childcare provider was unaffordable.
Furthermore, an upcoming report from Ed Trust will show that on
average, a student parent would need to work anywhere from 30 to 90
hours a week to cover child care and tuition costs at a public college
or university.
It is essential that Congress scale up the only program
specifically designed to deliver on-campus child care to Pell-eligible
student parents, which would dramatically enhance their chances of
achieving educational success and financial stability.
In FY23, Congress should fund the Child Care Access Means Parents
in School (CCAMPIS) Program at $500M.
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.
Sincerely.
[This statement was submitted by Denise Forte, Interim 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 (FY) 2023
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. The Society is dedicated to
promoting excellence in research, education, and clinical practice in
the field of endocrinology. The impact of the coronavirus is a
compelling illustration of why we must increase funding for the NIH and
the Centers for Disease Control and Prevention (CDC) to protect public
health. To support necessary advances in biomedical research to improve
health, the Endocrine Society recommends the NIH receive funding of at
least $50 billion for (FY) 2023; to facilitate the translation of these
advances to improve public health, the Endocrine Society recommends the
CDC receive funding of at least $11 billion; and to ensure that women
have access to appropriate health services, we recommend that the Title
X program be funded at $512 million. This request does not include
additional emergency supplemental funds or new programs situated in NIH
including the Advanced Research Projects Agency for Health (ARPA-H).
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. Physiological functions governed by the endocrine system are
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.
effective progress requires consistent support across nih
Endocrinologists often study communication between different organs
and how this influences disease, for example how hormones produced by
adipose tissue influence the development of cancer or susceptibility to
infections. Our members are therefore funded by many different
Institutes and Centers (ICs) at NIH and appreciate the need to apply
funding increases proportionally to all ICs and offices at NIH to
effectively advance knowledge of complex biological systems and
signaling pathways that impact multiple organs and diseases. We are
concerned that when funding is applied disproportionally and at the
expense of certain ICs, payline disparities increase and gaps in our
understanding of important biological pathways emerge. Regular,
sustainable, and proportional increases to all NIH ICs empower
endocrinologists to develop novel interdisciplinary approaches that
address public health priorities. For example:
--While the National Institute of Diabetes and Digestive and Kidney
Diseases (NIDDK) is taking a leadership role in understanding
the pathophysiology and clinical course of COVID-19 induced
diabetes, NIDDK also partnered with the National Institute of
Allergy and Infectious Diseases (NIAID) and others to develop
community-engaged testing interventions among underserved and
vulnerable populations.\1\
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\1\ https://www.niddk.nih.gov/research-funding/current-
opportunities/rfa-od-22-005.
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--Endocrinologists funded by National Institute of Environmental
Health Sciences (NIEHS) in partnership with the National
Institute for Child Health and Human Development (NICHD) and
others are aiming to improve our understanding of how climate
change will impact public health, for instance via impacts on
fertility.\2\
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\2\ Audrey J. Gaskins et al., 2021.
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--Endocrine oncologists supported by the National Cancer Institute
(NCI) and NIEHS are contributing to our knowledge of how drugs
and consumer products can contribute to cancer risk in
offspring.\3,4\
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\3\ https://www.endocrine.org/news-and-advocacy/news-room/featured-
science-from-endo-2021/drug-used-during-pregnancy-may-increase-cancer-
risk-in-mothers-adult-children.
\4\ https://endocrinenews.endocrine.org/edc-exposure-during-
pregnancy-may-reduce-breast-cancer-protection/.
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--Endocrine researchers funded by the National Institute of Mental
Health (NIMH) and Office of Research on Women's Health are
helping us better address gaps in understanding of how sex
differences contribute to mental illness in men and women.
report language opportunities for fiscal year 2023
Research on Transgenerational Health Effects: Diethylstilbestrol
(DES) is an endocrine-disrupting chemical that was prescribed to women
between 1940-1971 to prevent miscarriage, premature labor, and other
pregnancy complications. Unfortunately, not only was DES ineffective in
preventing these complications, but it also was linked to a rare cancer
in women and can cause a variety of cancers and other health effects in
the daughters and sons of exposed women. Research now suggests that the
effects of exposures may persist and cause health effects in the
grandchildren of exposed women and future generations. Recognizing the
critical need for knowledge about the health effects of DES exposure,
the NIH established the DES follow-up study, creating a coordinated
longitudinal cohort that has made important discoveries about the
health effects of DES exposure. We are now at a critical point in time
to learn more about the persistence of health effects beyond the
children of exposed women so that future generations have valuable
information about their own health risks.
We urge the subcommittee to therefore include report language
asking NIH to report on plans for existing or new cohort studies that
can address transgenerational effects of EDC exposures, including the
continuance of the DES longitudinal cohort.
Supporting the Physician-Scientist Workforce: Recognizing the
challenges facing the physician-scientist biomedical research
workforce, the NIH convened and charged a Physician-Scientist Workforce
Working Group with analyzing the current composition and size of the
physician-scientist biomedical workforce and making recommendations for
NIH to take to help sustain and strengthen a robust and diverse
physician-scientist workforce. In 2014, the NIH released a report which
made nine recommendations to sustain and strengthen a robust and
diverse physician-scientist workforce. We know that several Institutes
and Centers (I/Cs) have created initiatives for their own researchers;
however, there is a need for the NIH to comprehensively look at and
report on outcomes, best practices, and any gaps that may remain.
We urge the subcommittee to include report language asking NIH to
provide an update on actions to bolster the physician-scientist
workforce either by implementing the 2014 report's recommendations or
otherwise, including outcomes data on the Medical Scientist Training
Program (MSTP), and the Stimulating Access to Research in Residency
(StARR) program.
Special Programs Must Not Erode Support for Investigator-Initiated
Research
The Endocrine Society is enthusiastic about the potential for ARPA-
H to advance transformative public health interventions and develop new
research platforms that deliver improved care to patients quickly and
efficiently. Likewise, we appreciate the importance of pandemic
preparedness. However, these investments must not come at the expense
of the important investigator-initiated research that have been chiefly
responsible for the numerous NIH-supported success stories and public
health achievements. We therefore urge the Committee to provide at
least $50 billion to the NIH base budget, with increases applied
equally across all ICs and offices. Any additional funds for pandemic
preparedness or ARPA-H should only complement, rather than supplant,
these necessary investments in the future of biomedical research.
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
chronic 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.\5\ 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 protect the public's health.
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\5\ 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.\6\
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.
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\6\ Frost JJ, et al., Publicly Funded Contraceptive Services at
U.S. Clinics, 2015, New York: Guttmacher Institute, 2017.
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fiscal year 2023 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, the Endocrine Society recommends that
the subcommittee provide at least the following funding amounts through
the FY 2023 Labor, Health and Human Services, Education, and Related
Agencies appropriations bill:
--$50 billion for the National Institutes of Health
--$11 billion for the Centers for Disease Control and Prevention
--$512 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 joins the research community by
requesting $49 billion in fiscal year (FY) 2023 for the National
Institutes of Health (NIH) base program funding, including increased
support for vector-borne disease (VBD) research at the National
Institute of Allergy and Infectious Diseases (NIAID); $11 billion for
the Centers for Disease Control and Prevention (CDC) base program
funding, 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 $52 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 and arthropod carriers of
disease, like mosquitoes and ticks, 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 in 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 resistance to pesticides.
Further, effective preventative treatments, including vaccines, are not
available for most 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 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 on understanding how to
increase protection after exposure to arthropod disease vectors and the
pathogens they transmit that could cause Lyme disease and other tick-
borne infections. Using grant funding from NIAID, researchers from the
Yale School of Medicine developed and trialed the first messenger RNA
(mRNA) vaccine targeting ticks.\2\ Whereas previous efforts to develop
vaccines against tick-borne disease in humans have targeted disease-
related pathogens, this new mRNA vaccine technology induces immunity
against a salivary protein produced by the vector ticks themselves.
This study published in November 2021 in Science Translational
Medicine,\3\ showed that the mRNA vaccine administered to guinea pigs
caused blacklegged tick bites to become inflamed and ticks to fall off
too quickly to transmit the pathogen that causes Lyme disease. This
novel and important research demonstrates that the new mRNA vaccine
technology holds the potential to protect individuals not only against
the pathogen that causes Lyme disease but numerous other tick-borne
pathogens that are carried by the blacklegged tick.
---------------------------------------------------------------------------
\2\ https://www.smithsonianmag.com/smart-news/first-ever-mrna-
vaccine-for-lyme-disease-shows-promise-in-guinea-pigs-180979090/.
\3\ https://pubmed.ncbi.nlm.nih.gov/34788080/.
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Within the NIH, the nascent Advanced Research Projects Agency for
Health (ARPA-H), a signature priority for the Biden Administration,
represents an opportunity to catalyze health breakthroughs that cannot
readily be accomplished through traditional research or commercial
activity, which could include understanding and preventing emerging
infectious diseases. ESA supports at least $4 billion for the ARPA-H to
supplement, rather than supplant, the core investment of at least $49
billion in NIH's base program level. Similarly, under NIH, the National
Institute of Environmental Health Sciences (NIEHS) supports research
and initiatives to address health concerns influenced by climate change
or environmental agents, including VBD and zoonotic diseases. ESA
supports at least $110 million for NIEHS to continue efforts to
identify potential health effects associated with climate change and
environmental factors and implement health adaptation plans.
ESA requests robust support for CDC programs addressing VBD within
the National Center for Emerging and Zoonotic Infectious Diseases
(NCEZID) by supporting the Centers of Excellence on VBD, as authorized
by the Kay Hagan Tick Act in 2019, and other work by the Division of
VBD with at least $75.103 million per year, as is aligned with the FY
2023 President's Budget Request, as well as the $20 million authorized
by the Kay Hagan Tick Act for the Epidemiology and Laboratory Capacity
(ELC) program to address VBD. CDC, serving as the Nation's leading
health protection agency, conducts research and provides health
information to prevent and respond to infectious diseases and other
global health threats. 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 health care 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 rickettsioses (spotted fevers), which includes the
notably fatal Rocky Mountain spotted fever (RMSF).\4\ Disability and
death from RMSF are preventable if the antibiotic doxycycline is
administered within the first five days of illness: without treatment,
1 in 5 RMSF cases lead to death.\5\ Importantly, spotted fevers have
non-specific symptoms, and fewer than 1 percent of the spotted fever
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.\6\ CDC funding is crucial in the development of
this and other educational tools that equip health care providers to
effectively combat tick-borne diseases.
---------------------------------------------------------------------------
\4\ https://www.ncbi.nlm.nih.gov/pubmed/?term=30969821.
\5\ https://www.cdc.gov/media/releases/2019/p0513-rocky-mountain-
spotted-fever-training.html.
\6\ https://www.cdc.gov/rmsf/resources/module.html.
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Using funding appropriated during the 2016 Zika crisis to help
respond to that emergency and develop the necessary future workforce,
CDC awarded $50 million to five universities for 5 years to establish
regional Centers of Excellence (COE) to address existing and emerging
VBD. The five centers, for which funding expired in 2021, generate
research, education, outreach, and capacity to enable appropriate and
timely local public health action for VBD throughout the U.S. The COE
model requires collaboration between the research institutions and the
local and regional departments of health (DOH), important relationships
which have not generally arisen organically. This is critical given
significant regional differences in vector ecology, disease
transmission dynamics, and resources. Sustained funding for the COE is
critical to continue essential efforts to help prevent and control VBD
threats in the U.S.
The Kay Hagan Tick Act also expands authorized support for the ELC
program, critical to supporting State and local departments of health
vector surveillance and management. For the last several years, the CDC
has only been able to fund a third of the $50 million in requests they
receive from States to meet these needs. ESA supports fully funding the
$20 million authorized in the Kay Hagan Tick Act to support the ELC
grants for VBD.
ESA requests robust funding for IMLS, including no less than $52
million for the Office of Museum Services in FY 2022. The services and
funding provided by IMLS are critical in several areas--research
infrastructure, workforce development, and economic impact. 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. 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 $21 billion. Museums are critical to the public
understanding of science through exhibits and programs, and in so
doing, support science education as an integral part of the Nation's
educational infrastructure. They also make significant long-term
contributions to economic development in their local communities.
Thank you for the opportunity to offer the Entomological Society of
America's support for NIH, CDC, and IMLS research programs.
ESA, headquartered in Annapolis, Maryland, is the largest
organization in the world serving the professional and scientific needs
of entomologists and individuals in related disciplines. Founded in
1889, ESA is a non-partisan professional organization 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 ESA, please
see http://www.entsoc.org/.
[This statement was submitted by Jessica Ware, PhD, President,
Entomological Society of America.]
______
Prepared Statement of the Epilepsy Foundation
summary of fiscal year 2023 appropriations recommendations
_______________________________________________________________________
--Please provide $11 billion for the Centers for Disease Control and
Prevention (CDC) including:
--$13 million for the National Center for Chronic Disease
Prevention and Health Promotion's Epilepsy program, an
increase of $2.5 million over FY 2022; and
--$164 million for the CDC's Safe Motherhood & Infant Health
Program in order to support and help expand the Sudden
Unexpected Infant Death (SUID) & Sudden Death in the Young
(SDY) Case Registry; and
--$5 million for the CDC's National Neurological Conditions
Surveillance System (NNCSS).
--Please provide at least $49 billion for the National Institutes of
Health (NIH)'s base and ensure that any funding for the new
ARPA-H, or for other targeted programs like pandemic
preparedness, supplement the $49 billion recommendation for
NIH's base budget.
--Please provide proportional increases for various NIH Institutes
and Centers, including the National Institute of
Neurological Disorders and Stroke (NINDS).
_______________________________________________________________________
Thank you for the opportunity to submit testimony on behalf of the
Epilepsy Foundation and the people with the epilepsies whom we serve.
Chairwoman Murray, Ranking Member Blunt, and distinguished members of
the subcommittee, we deeply appreciate the robust investments in public
health and research programs over recent years which are helping us
better understand and treat the epilepsies and better support people
with epilepsy and their families day-to-day. As you and your colleagues
work on appropriations for FY 2023, please continue this commitment and
provide timely investments public health and research programs at the
CDC and in the NIH. Thank you for your time and for your consideration
of these requests.
about the epilepsy foundation
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.
about the epilepsies
Epilepsy is a disease or disorder of the brain which causes
reoccurring seizures affecting a variety of mental and physical
functions. It is a spectrum disease comprised of many diagnoses
including an ever-growing number of rare epilepsies. There are many
different types of seizures and varying levels of seizure control.
3.4 million Americans live with active epilepsy including 470,000
children and teenagers. Thirty to forty percent of people with epilepsy
live with uncontrolled seizures despite available treatments. Delayed
recognition of seizures and inadequate treatment increase a person's
risk of subsequent seizures, brain damage, disability, and death.
Epilepsy imposes an annual economic burden of $19.4 billion on the
country.
Please provide $11 billion for CDC including $13 million for CDC's
Epilepsy program.
The Institute of Medicine's (IOM) report on epilepsy, Epilepsy
Across the Spectrum: Promoting Health and Understanding, identifies the
Epilepsy Foundation and the CDC as leaders in addressing many of its
national recommendations to eliminate stigma, improve awareness and
education and better connect people with the epilepsies to health and
community services. The CDC Epilepsy program is the only public health
program specifically related to epilepsy with a national scope and
community programs. Focus areas requiring continued and increased
investment include:
--Training for School Staff: In FY21, 6,090 school nurses and 177,120
school personnel have been trained on seizure recognition and
seizure first aid. On-demand training modules have been
developed to scale up training of these key, frontline
community members supporting students with seizures.
--Seizure First Aid Certification: 14,690 people were certified in
seizure first aid in FY21, in partnership with multiple
healthcare professional groups serving minority communities.
Continued focus is needed on rural and ethnically and racially
diverse communities as nearly 40 percent of persons diagnosed
with epilepsy are Black or Hispanic and many people with
epilepsy in those communities have poorer health outcomes.
--Professional Education in Epilepsy: To improve care in rural and
underserved communities, Project ECHO has educated more than
1,155 primary healthcare providers about managing epilepsy over
3 years, though more focus is needed on management of severe,
drug-resistant epilepsy and quality of care improvement
methods. In addition, seven Behavioral Health Outreach webinars
were developed as tools for ensuring access to epilepsy
knowledge and skills for behavioral and mental health
providers.
--Reducing Barriers to Medication Adherence: By establishing a
regular screening process for identifying and addressing
barriers to medication adherence, an Epilepsy Learning
Healthcare System (ELHS) is addressing a key health disparity
in epilepsy. ELHS has produced 11 tools to help patients and
families overcome common barriers to adherence.
--Supporting Mental Health Needs: Mental health screenings have been
implemented on the 24/7 Epilepsy & Seizures Helpline since
people with epilepsy are at increased risk for depression,
anxiety, and suicide. Several suicide interventions have been
successful. In addition, people with epilepsy are being
connected to self-management programs that prevent and decrease
depression.
Also as part of the $11 billion for the CDC, please provide $164
million for the CDC's Safe Motherhood & Infant Health Program in order
to support and help expand the SUID & SDY Case Registry.
SUDEP is the sudden, unexpected death of someone with epilepsy, who
was otherwise healthy. It is the leading cause of death in people with
uncontrolled seizures. Each year, it is thought that more than 1 in
1,000 people with epilepsy die from SUDEP and this number increases
drastically to 1 in 150 for people whose epilepsy is not controlled by
treatment. But there are deficiencies and inconsistencies with how
SUDEP-related deaths are tracked. While some strides are being made,
the exact cause(s) of SUDEP are not known.
Building on child death review programs at the National Center for
Fatality Review and Prevention Case's Reporting System, the SUID
portion was initiated in 2009 and in 2015, the SDY Case Registry
component was added to include children and adolescents. A joint
collaboration of the CDC and NIH, the SDY Case Registry increases the
understanding of the prevalence, causes, and risk factors for infants,
children, and young adults up to age 20, who die suddenly and
unexpectedly including from SUDEP-informing strategies to prevent
future deaths. The registry is present in 22 States and jurisdictions
but this is capturing less than half of these deaths nationwide.
Increased investment in the CDC's Safe Motherhood/Infant Health
Program-where the Registry is housed-would allow more States to
participate and in turn, yield more data to improve understanding and
prevention.
The Foundation urges the Committee to include the following report
language:
Sudden Unexpected Infant Death [SUID] and Sudden Death in the Young
[SDY] Case Registry.-The Committee is aware that SUID is the leading
cause of death of infants 1 month to 1 year of age in the United
States. While there is no known way to prevent SUID, there are ways to
minimize risk by collecting and analyzing data, such as that available
through the SUID and SDY Case Registry. The SDY component of the Case
Registry has been critical in improving data gathered on sudden deaths
of children and youth up to age 20. This includes the ability to study
and better understand Sudden Unexpected Death in Epilepsy (SUDEP) and
sudden cardiac death in the young. Each year, it is thought that more
than 1 in 1,000 children and youth with epilepsy die from SUDEP. It the
leading cause of death amongst people with uncontrolled seizures and
the exact cause(s) of SUDEP are not known. Accordingly, the Committee
includes an increase within CDC's Safe Motherhood and Infant Health
program for the Registry to expand the number of States and
jurisdictions participating in monitoring and surveillance.
Furthermore, the Committee includes funding for CDC to award grants or
cooperative agreements to States, Tribes, and Tribal organizations for
purposes of improving data collection related to SUID and sudden
unexpected death in childhood, including by identifying, developing,
and implementing best practices to reduce or prevent infant death,
including practices to improve safe sleep, as well as unexpected death
in youth in coordination with appropriate nonprofits.
Also as part of the $10 billion for the CDC, please provide $5 million
for the CDC's National Neurological Conditions Surveillance
System.
In 2016, Congress authorized the CDC to establish the NNCSS and it
first received funding in FY 2019. The CDC is initially focusing on MS
and Parkinson's, in order to learn through the process before extending
to other neurological conditions. Extending to additional neurological
conditions such as the epilepsies is contingent on continued funding
for this program so the Foundation requests $5 million for the NNCSS in
FY 2023.
Please also provide at least $49 billion for the National Institutes of
Health (NIH)'s base and ensure that any funding for the new
ARPA-H, or for other targeted programs like pandemic
preparedness, supplement the $49 billion recommendation for
NIH's base budget along with proportional increases for various
NIH Institutes and Centers, including NINDS.
As a result of sustained investment in NIH, the epilepsy research
portfolio has grown from about $154 million in FY 2017 to $198 million
in FY 2020. Much more can be done though, particularly in the area of
bold cross-cutting initiatives and multi-center efforts. For FY 2023,
we ask that the subcommittee include key committee recommendations,
like the language below, to encourage additional epilepsy research in
emerging areas.
national institutes of health
national institute of neurological disorders and stroke
Epilepsy Care.--The Committee congratulates NINDS and its sister
institutes in the Inter-Agency Collaborative to Advance Research on
Epilepsy (ICARE) for supporting fundamental brain research that has
dramatically advanced the scientific understanding of the epilepsies
over the last two decades. The Committee encourages NIH and other ICARE
partners to increase their investments in health services and
implementation science to ensure that the benefits of research are
effectively translated to epilepsy care, and to work together to
further coordinate their activities to improve systems of epilepsy
care.
______
Prepared Statement of Essential Access Health
Dear Chairwoman Murray and Ranking Member Blunt:
As Chief External Affairs Officer of Essential Access Health
(Essential Access), I thank you for this opportunity to provide
testimony in support of increased funding for the Title X Federal
family planning program in the fiscal year (FY) 2023 appropriations
bill. The Title X family planning program has been level-funded by
Congress for eight straight fiscal years, as the need for family
planning and sexual health services has increased and become more
critical than ever. With increased need and the rising costs of
providing care, level-funding is equivalent to a cut.
Essential Access has been a Title X grantee since the program was
established with strong bi-partisan support in 1970.
For over 50 years, Essential Access has administered the Title X
Federal family planning program in California--the largest and most
diverse Title X system in the Nation. This year, Essential Access was
also awarded a grant to re-introduce the Title X program in the State
of Hawaii and address the dire need for family planning services
statewide. On March 30, Essential Access was notified that we were
awarded a 5-year service grant to continue serving as the sole Title X
grantee in both States. While we are proud to continue working with a
robust network of qualified providers, the award amounts received were
significantly less than the requested amount of funding necessary to
meet the needs of Title X patients and health care providers throughout
California and the Hawaiian islands.
The California Title X statewide program suffered a dramatic cut in
funding. Our funding level for the next project period is $13.2
million, a drastic reduction of $8 million. This is the largest Title X
funding cut Essential Access has received in our 50-year history
administering the program. The $2.1 million in funding support for the
Title X program in Hawaii, does not meet the need for equitable,
affordable, and high quality family planning services for the more than
66,000 people estimated to be in need of Title X-supported services
statewide. Hawaii did not receive any Federal resources to support
family planning care between the summer of 2019 and January of 2022.
This gap in Federal funding greatly reduced the capacity of the family
planning safety-net across the State of Hawaii.
Inadequate Title X funding is a direct consequence of the program
receiving level-funding in the FY 2022 omnibus appropriations bill,
despite strong support for significant increases from both chambers of
Congress and the White House.
Failure to increase Title X funding has had an immediate and dire
impact. In addition to not being able to meet the need for Title X
resources in Hawaii, some health centers in California did not receive
any Title X funding and all remaining Title X-funded health centers in
California's Title X provider network received a reduction.
These unexpected cuts are compounded by increases in the cost of
delivering care at a time when community health centers are already
stretched thin by the pandemic and rising costs of providing care.
Title X providers depend on these dollars to support staffing,
infrastructure, outreach and education activities, quality improvement
activities, and other wrap-around services.
The impact of these cuts to Title X services will have a
disproportionate effect on Californians and people of Hawaii with low-
incomes, people living in rural regions and urban health care deserts,
and communities of color.
Additional resources are urgently needed to meet the need for
comprehensive family planning services in Hawaii and California, and
across the country. I urge Congress to use the FY 2023 Labor, Health
and Human Services, Education, and Related Agencies appropriations bill
to make a strong statement in support of high-quality, equitable, and
patient-centered family planning care and make it right for Title X by
increasing program funding to $737 million.
Thank you for the opportunity to submit this testimony. Contact Amy
Moy at [email protected] if you have questions or need
additional information.
Sincerely.
[This statement was submitted by Amy Moy, Chief External Affairs
Officer,
Essential Access Health.]
______
Prepared Statement of Every Hour Counts Coalition
As the Appropriations committee finalizes its fiscal year 2023
Labor, Health and Human Services, Education and Related Agencies (LHHS)
appropriations bill budget request, the Every Hour Counts Coalition
respectfully calls on Congress to preserve and strengthen Federal
investments in education programs that help build and improve quality
expanded learning systems across the country. The critical Federal
investments that have been made to support students and communities
recovering from the COVID-19 pandemic in previous years must be met by
continued investment in annual spending to fully support the needs of
students in all communities.
Every Hour Counts is a coalition of citywide intermediary
organizations that are deeply engaged in building and improving
expanded learning systems--coordinated groups of service providers,
public agencies, funders, and schools. These systems provide critical
support for local education programming by offering enrichment
opportunities, raising funds to increase access, and promoting
continuous improvement. Since its founding in 2005, Every Hour Counts
has grown to 28 cities, representing longstanding partnerships with
more than 3,500 schools, districts, and community-based organizations
that provide quality after-school and summer programming. Every Hour
Counts' partners and learning community members support initiatives
that reach more than 500,000 students each year.
Strong Federal investments in education programs help to make these
effective partnerships work. While emergency funding provided by the
American Rescue Plan Act and previous COVID-19 relief packages were
crucial in meeting the immediate needs of the COVID-19 pandemic
(including summer and expanded learning), investments in the fiscal
year 2023 budget are vital to ensure the success of continued recovery
efforts in the years to come. Our coalition knows firsthand that out-
of-school time instruction will continue to be a critical focus of
long-term recovery and acceleration to address students' academic,
social and emotional needs as the COVID-19 pandemic continues to affect
students. Schools and districts cannot and should not be expected to
meet every academic and non-academic need for their increasingly
diverse student populations on their own. Therefore, we respectfully
urge Congress to recognize the need to further invest in the following
programs and initiatives:
nita m. lowey 21st century community learning centers program
The Nita M. Lowey 21st Century Community Learning Centers (21st
CCLC) program is the only Federal funding stream dedicated to
supporting local summer learning and after-school programs in every
State. Today, more and more youth participate in after-school and
summer programs across the country,\1\ and experts believe the quality
of these programs is continually improving. These programs have been
especially critical resources during the COVID-19 pandemic for working
families and vulnerable student populations. Despite significant
increases in the number of students enrolling in quality expanded
learning programs, there continues to be substantial unmet demand for
enrichment opportunities throughout the country, particularly for low-
income communities. For every child in an after-school program, two are
waiting to get in, a discrepancy further amplified in rural and low-
income communities.\2\
The much-needed increases to this program over recent years are
helping serve nearly 2 million children and families in high-need
communities across the country by increasing access to high-quality
expanded learning programs and will continue to play a critical role in
communities as students recover from the COVID-19 pandemic. Congress
should push to maintain this positive momentum and continue increasing
investments in these programs. Therefore, we respectfully ask that
Congress support the 21st CCLC program by increasing its funding level
to $1.39 billion, a $100 million compared to fiscal year 2022 funding
levels.
full-service community schools
Full-Service Community Schools address academic, social and health
services for students, their families and community members in high-
poverty areas throughout the United States. These integral services
help students overcome barriers to learning and have become even more
crucial to the well-being of communities in the wake of the COVID-19
pandemic.
Every Hour Counts urges Congress to continue its commitment to
these services by supporting President Biden's proposal of $468 million
for the Full-Service Community Schools program. This support will
ensure that vulnerable communities, including high-poverty rural areas,
receive academic, social and health services to strengthen their
recovery from the COVID-19 pandemic.
improving academic achievement of the disadvantaged- title i, part a
More than 90 percent of the Nation's school districts and nearly 60
percent of all public schools across the country rely on Title I funds
in order to ensure that high-need students meet challenging State
academic standards. As schools and districts work towards implementing
school improvement strategies, particularly in partnership with
intermediaries and other community-based organizations, it is critical
to provide robust investments in the Title I program to ensure that
schools have the resources needed to serve all students, including
their most high-need students. The COVID-19 pandemic has highlighted
the disparities among schools that were properly equipped to support
students during times of crisis and those that were not. Our nation
needs to make the investments necessary to provide equitable resources
to schools so that all students may receive proper opportunities to
learn and grow.
The Every Hour Counts coalition asks that Congress support
President Biden's proposal for Title I. Making strong investments in
communities with fewer resources is critical in ensuring that the needs
of students are addressed in the years to come.
supporting effective instruction state grants- title ii, part a
The Title II, Part A program provides flexible funding to States
and districts to support high-quality professional development for
educators, including the after-school workforce and other school
personnel, that positively affect teacher, school leader and educator
effectiveness. , High-quality staff are necessary for after-school,
summer and other expanded learning programs to be successful. Despite
the fact that the after-school workforce is one of the fastest growing
education sectors in many cities, most citywide systems do not have
comprehensive strategies in place to recruit, train and support a
qualified and diverse workforce. Every Hour Counts' community partners
have been working together with schools and districts to provide joint
professional development with in- and out-of-school personnel to help
increase supports for these educators and in turn increase educational
quality. Educators must receive high-quality training and supports to
properly address the academic, social and emotional needs of students
during the COVID-19 pandemic recovery. Comprehensive out-of-school time
(OST) organizations have demonstrated that they are willing and able to
rise to post-pandemic challenges--and they are already strategizing how
to do so, but they need consistent, reliable funding and partnerships
to help strengthen programming, solve challenges, and fill gaps.
We encourage Congress to continue its support for this program in
fiscal year 2023 by requesting that it be funded at $2.295 billion, the
authorized funding level stipulated in the Every Student Succeeds Act
(ESSA).
student support and academic enrichment grant program- title iv, part a
The Student Support and Academic Enrichment (SSAE) Grant program
provides formula grant funds to States and districts to support a host
of activities that provide well-rounded educational opportunities,
including those that increase student interest and engagement in
science, technology, engineering and math (STEM) subjects, as well as
activities to support safe and healthy students and activities to
support the effective use of technology.
Over the past 7 years, Every Hour Counts has been involved in
multi-city demonstration projects that have aimed to advance and
strengthen the connections between STEM learning in the classroom and
expanded learning programs in order to increase access to these
opportunities for all students, particularly those from traditionally
underrepresented groups. Through a focus on joint professional
development and collaborative instruction between teachers and expanded
learning educators, we have been able to create a culture shift in
communities to make STEM learning an expectation in quality expanded
learning programs. Providing enrichment opportunities has been
especially important as the Nation attempts to re-engage students
returning from remote learning during the COVID-19 pandemic and as the
country plans to strengthen its STEM pipeline to continue being a
global leader in innovation and technology.
We believe that this program will provide much needed funding to
schools and districts to support the unique needs of their students and
communities and therefore hope that Congress will demonstrate more
support for it in fiscal year 2023. The Every Hour Counts coalition
urges Congress to support this program by funding it at $1.6 billion,
the authorized funding level stipulated by ESSA.
the corporation of national and community service--americorps program
AmeriCorps volunteers play a critical role in helping to increase
student outcomes, build capacity and drive quality both in the
classroom and in expanded learning settings. As tutors, mentors and
role models volunteering in classrooms, after-school and summer
learning programs across the country, AmeriCorps volunteers' days
extend beyond the last bell. In many Every Hour Counts communities,
AmeriCorps volunteers help us raise the bar on quality expanded
learning programs and provide hands-on learning experiences to more
students. During the COVID-19 pandemic, AmeriCorps volunteers have
provided crucial supports to students and communities that will
continue during the pandemic recovery period. For example, the
Minnesota AmeriCorps Emergency Response Initiative, launched at the
start of the pandemic, focused on providing tutoring support to K-12
students during the summer of 2021 and continued funding will ensure
such programing exists.
We respectfully urge Congress to further support these programs by
requesting that the Corporation for National and Community Service be
funded at $1.767 billion and the AmeriCorps State and National program
be funded at $970 million in fiscal year 2023.
the education innovation and research program
The Education Innovation and Research (EIR) grant program provides
funding to develop, implement and scale field-initiated innovations to
improve achievement for underserved students. Crucially, the program
places an emphasis on evidence-based practices and requires diligent
evaluation of the innovations. The mission of the EIR program aligns
closely to the mission of Every Hour Counts, and currently, Every Hour
Counts works across sectors to build expanded learning systems across
the country that engage students and improve academic and social-
emotional learning outcomes. At our Expanded-Learning Systems-Building
Institute, for example, we used cross-sector collaboration to share
best practices, resources and lessons learned to consider how to scale
high-quality practices, develop program quality improvement and keep
racial equity at the center of our work. The COVID-19 pandemic has
demonstrated the importance of social emotional learning and the needs
of the whole child. Addressing these needs is a crucial element of the
U.S. Department of Education's pandemic recovery efforts and requires
robust Federal investment.
Every Hour Counts asks that Congress support President Biden's $514
million proposal for EIR with respective set-asides of $73.3 million
for STEM and SEL education activities. Building upon this investment
will expand educational opportunities that support the ``whole child''
across a number of key programs.
The Every Hour Counts coalition stands in strong support of the
programs mentioned above which provide critical resources to schools
and districts working in partnerships with us to improve educational
outcomes for students across all communities. We urge Congress to
support our Nation's youth through robust investments that will
strengthen their recovery from the COVID-19 pandemic and guide them
towards success.
Please do not hesitate to contact me if you have any questions or
if we can be of any further assistance.
Sincerely.
[This statement was submitted by Jessica Donner, Executive
Director, Every Hour Counts.]
______
Prepared Statement of FASD United
Madam Chair and subcommittee members, FASD United strongly supports
an increase of at least $2 million for FY 2023 for this line item in
CDC's budget, together with report language to strengthen federally
supported initiatives to prevent, diagnose, and improve service
delivery for FASD, the Nation's leading preventable cause of
developmental disabilities and birth defects, and a leading cause of
behavioral and learning problems. For many years, the line item has
been labeled `` Fetal Alcohol Syndrome''. But the CDC typically uses
the term ``Fetal Alcohol Spectrum Disorders'' or FASD as the umbrella
term adopted in 2004 to describe the spectrum of developmental
disabilities that result from prenatal alcohol exposure.
We request the following specific report language for the CDC's
National Center for Birth Defects and Developmental Disabilities ``to
support expansion and strengthening of existing national community-
based and professional fetal alcohol spectrum disorder (FASD) networks
to disseminate best practices and technical assistance on diagnosis,
treatment, intervention, peer mentoring, and other essential
services.''
background
Prenatal alcohol exposure (PAE) of our children is a silent public
health crisis within our families and communities. PAE is a major known
cause of birth defects, brain damage causing neurodevelopmental
impairments and learning problems--commonly known as Fetal Alcohol
Spectrum Disorders (FASD).
Recent CDC data show increasing use of alcohol during pregnancy
with 14 percent (1 in 7 previously 1 in 9) pregnant people reporting
current drinking of alcohol and about 5 percent or 1 in 20 pregnant
people reporting binge drinking.
How common is FASD in the U.S.? Until recently, we did not have
reliable prevalence figures. However, a study on prevalence of FASD
published in the February 2018 Journal of America Medical Association
(JAMA. 2018;319(5):474-482) shows a more startling and more accurate
picture of the problem. Researchers assessed 6,639 first graders in
four U.S. regions and found up to 1 in 20 children with an FASD. They
also suspected substantial under reporting of prenatal alcohol use and
that ``we are missing kids''. So, these results are likely to be a
conservative estimate on FASD prevalence in the U.S.
Why was this prevalence study so important? First, researchers
screened and did in-person assessments for FASD (other prevalence
studies have been based on birth record reports and record reviews).
Second, researchers learned that youth with this disability can be
readily identified in U.S. mainstream populations. Third, neither race
nor ethnicity and social economic status were significant factors--the
youth with FASD mirrored the demographics of their community. Also
important: this prevalence data is approaching two times higher than
autism's prevalence, yet autism Federal funding is nearly 10 times
greater. According to the National Institute on Alcohol Abuse and
Alcoholism (NIAAA) Director Dr. George Koob, ``The findings of this
study confirm that FASD is a significant public health problem, and
strategies to expand screening, diagnosis, prevention, and treatment
are needed to address it.''
The study also confirmed that binge drinking is driving up the
numbers of children with FASD. It provides useful data for targeted
prevention efforts. Mothers of youth with FASD compared to a controlled
population: (1) reported consuming significantly more drinks 3 months
before pregnancy; (2) recognized that they were pregnant later; (3) had
more first trimester alcohol consumption; (4) were more likely to binge
with 5 or more drinks; (5) reported more drinking days in the past 30
days; and (6) reported that their husbands/partners consumed
significantly more drinks per drinking day during pregnancy.
The above prevalence data, together with the increase in alcohol
use during pregnancy, demands a renewed focus on the issue of binge
drinking and other alcohol abuse and its harmful effects on our
children.
Insufficient Federal Investment in FASD. In 1998, Congress first
authorized Federal FASD-related programs at $27 million annually
(nearly $48 million in today's dollars). Since then, however, Federal
funding for FASD-related programs has declined. Funding has flatlined
for the Centers for Disease Control and Prevention (CDC) at $11 million
for what is the most dedicated public health focus on FASD to support
clinical and epidemiological research, public health initiatives and
networks, and expansion of clinical interventions. Besides the $30
million (FY 2022) for research through the National Institute of
Alcohol Abuse and Alcoholism (NIAAA), the only other specific FASD
funding is $1 million at the Health Resources and Services
Administration (HRSA), Maternal and Child Health Block Grant, Title V
SPRANS Set-Aside).
There remains an alarming gap in FASD-related diagnostic and
clinical resources. Among medical and behavioral health professionals,
their inconsistent use or limited knowledge of diagnostic criteria and
clinical guidelines result in many (if not most) children and adults
living with FASD going undiagnosed or misdiagnosed. Families in every
State, and especially in the child welfare system, struggle with FASD,
and they cannot find systems of care that are familiar with or are
equipped to diagnose and address FASD-related disabilities.
Cost of FASD. Economic impact studies (J Addict Med 2018;12: 466-
473) show that the costs of FASD are significant, totaling $205 billion
in the United States (health care, special education, residential care,
productivity losses, and corrections). Costs to Tribal communities over
an individual's lifetime with FASD can range from $850,000 to $4
million, according to the National Congress of American Indians (NCAI;
#REN-19-037). Yet, evidence shows these risks/costs can be
significantly reduced by FASD-informed families, communities, and
healthcare and other providers working together to create a system of
early identification, stable environment with enduring relationships.
The alarming increase in prenatal alcohol consumption (41 percent)
due to the COVID pandemic, and the already soaring rates of FASD,
justify additional Federal investment to strengthen CDC efforts to:
expand prevention programs to heighten awareness of FASD and the risks
associated with prenatal alcohol exposure; and increase existing
national community-based FASD networks to expand access to diagnostic,
treatment, intervention, and other essential services.
CDC's FY 2023 Congressional Justification. Last year, the House-
passed FY 2022 Labor-HHS Appropriations bill included a $1 million
increase (from $11 million to $12 million) for the CDC's line item for
FASD programs, but unfortunately the conference agreement retained the
flatlined amount of $11 million. With reference to the House-passed
provision, the CDC included the following discussion in its FY 2023
Congressional Justification:
``CDC appreciates the Committee's support of awareness and
prevention of fetal alcohol spectrum disorders (FASDs). CDC
uses a comprehensive approach to address FASDs and the
prevention of alcohol use during pregnancy. CDC conducts
activities related to assessing trends in alcohol and
polysubstance use in pregnancy and monitoring health care
provider behaviors related to alcohol screening and brief
intervention (SBI). CDC currently supports a network to reach
health care providers across the Nation to implement evidence-
based strategies to reduce alcohol use during pregnancy and
develop and disseminate FASD training and educational
resources. In FY 2022, women of reproductive age within 67
health clinics across four health care systems have received
appropriate alcohol screening and brief intervention services.
In 2021, CDC also partnered with the MITRE Corporation to
develop five clinical decision support (CDS) tools on alcohol
SBI to help screen and offer evidence-based prevention
strategies to those at risk. In FY 2022, two of these CDS tools
were piloted to assess their use in a clinical setting.''
Notably, CDC's justification went on to state: ``. . . in FY 2023,
at level funding with FY 2022, CDC will continue to monitor trends in
alcohol and polysubstance use in pregnancy and support partnership
activities. In the absence of additional resources, CDC lacks capacity
to expand prevention efforts and extend the reach of its national
partnership network.'' (Emphasis added.)
In conclusion, the enormity of the problem of FASD and its impact
on families and communities in the United State and the increasing use
of alcohol during pregnancy justify an increase in investment by the
Federal Government. Thank you so much.
______
Prepared Statement of the Federation of American Societies for
Experimental Biology
Dear Chair Murray and Ranking Member Blunt:
On behalf of the 110,000 researchers of the Federation of American
Societies for Experimental Biology (FASEB) from its 28 member
societies, I am writing to recommend at least $50 billion for the
National Institutes of Health's base in FY 2023.
Federal investments in fundamental research have led to remarkable
progress in the biological and biomedical sciences. Basic research was
the groundwork for the speed--months instead of years--that led to the
development of COVID-19 vaccines and also supports pre-clinical
research involving the use of animal studies to achieve medical
progress.
Despite Congress' bipartisan support for investing in science,
Federal funding for research has not kept pace, posing a threat to our
Nation's competitiveness. We face a real threat of losing our edge in
industries such as biotechnology if we do not prioritize increasing
investments in science, research infrastructure such as core
facilities, and building a diverse workforce.\1\ The U.S. spends less
on research and development (R&D) than many countries. If the U.S. is
to be prepared to respond to future threats, our scientific leadership
must progress. According to Science Is Us, there is the added benefit
of jobs. STEM supports 69 percent of U.S. gross domestic product,
touches two out of three workers, and generates $2.3 trillion in tax
revenue.\2\
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\1\ https://ncses.nsf.gov/pubs/nsb20201/executive-summary.
\2\ STEM and the American Workforce. You've heard it before: STEM
jobs--... | by Science is US | Medium.
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The NIH is the Nation's largest public funder of biomedical
research in the world, providing competitive grants to support the work
of 300,000 scientists at universities, medical centers, independent
research institutions, and companies nationwide. The biomedical
discoveries, innovations, and treatments that NIH support are possible
because of scientific research with animals which provide in-depth
knowledge of entire biological systems and complex disorders affecting
multiple organs. As required by the Food and Drug Administration,
animal research is also essential during the preclinical stage of drug
development to determine the safety and efficacy of potential drugs and
therapies prior to human clinical trials.
A recent example of NIH's effective ability to harness animal
research and maximize its public-private partnerships, NIH collaborated
with industry to develop a messenger RNA (mRNA) vaccine which was
quickly adapted for COVID-19.\3\ The agency also accelerated the
development and commercialization of COVID testing through the Radx
initiative.\4\
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\3\ https://www.niaid.nih.gov/diseases-conditions/coronaviruses-
therapeutics-vaccines.
\4\ https://www.nih.gov/research-training/medical-research-
initiatives/radx#overview.
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With these resources, NIH has accelerated progress across all areas
of medical science, including regenerative medicine, cancer
immunotherapy, and neurological health.\5,6,7\ The agency is also
committed to supporting the next generation of our biomedical research
enterprise.\8\
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\5\ NIH Regenerative Medicine Innovation Project, National
Institutes of Health, Bethesda, MD.
\6\ NCI's Role in Immunotherapy Research, National Cancer
Institute, Bethesda, MD.
\7\ The BRAIN Initiative Summary, National Institutes of Health,
Bethesda, MD.
\8\ 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 a few years
ago, Congress must continue to increase biomedical research funding to
continue pandemic preparedness efforts, not to mention the largest 12-
month increase in inflation since June 1982 at seven percent.\9\ Our
nation is confronting public health threats, especially given global
climate change that is negatively impacting biodiversity and one
health--the intersection of biological science, earth sciences, and
ecology. More research will be needed to address infectious diseases,
and greater exposure to environmental threats that impact national
security, public health, and economic progress. \10\ Additionally,
having to operate under lengthy ``continuing resolutions'' over the
last several fiscal years has impacted NIH's ability to provide
predictable support to the research community due to not being able to
fund new grants or projects until the agency received a final budget,
and NIH has not been able to make all researchers set back by the
pandemic whole.\11\
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\9\ https://www.bls.gov/news.release/cpi.nr0.htm.
\10\ IPCC AR5 Climate Change 2014, Chapter 11: Human Health:
Impacts, Adaptation, and Co-Benefits.
\11\ Ad Hoc Group Statement on RISE Act Introduction and Research
Relief Feb. 5, 2021.
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In the U.S., we continue to address the needs of a growing aging
population and the serious disease of obesity.\12,13\ NIH research is
developing therapies for a whole spectrum of age- related
disorders.\14\ Obesity impacts 42 percent of the U.S. population and
increases the likelihood of developing costly medical conditions such
as diabetes, cancer, and heart disease.\15\ Additionally, minority
populations experience a higher prevalence of these diseases.\16\
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\12\ https://www.census.gov/newsroom/press-releases/2018/cb18-41-
population-projections.html.
\13\ NIDDK Health Information.
\14\ Aging Well in the 21st Century: Strategic Directions for
Research on Aging, National Institute on Aging, Bethesda, MD.
\15\ CDC Obesity Data.
\16\ Special issues regarding obesity in minority populations--
PubMed (nih.gov).
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Our recommendation of at least $50 billion allows NIH to continue
support for the Next Generation Researchers Initiative; and expand dual
purpose research in biomedicine and agriculture among NIH and other
Federal agencies.\17\
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\17\ BILLS-116RCP68-JES-DIVISION-H.pdf (house.gov) (pg. 63).
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Respectfully Submitted.
[This statement was submitted by Ellen Kuo, Associate Director,
Legislative
Affairs, Federation of American Societies for Experimental Biology.]
______
Prepared Statement of the Federation of Associations in Behavioral and
Brain Sciences
Chairwoman Murray, Ranking Member Blunt, and Members of the
subcommittee:
The Federation of Associations in Behavioral and Brain Sciences
(FABBS) is grateful for the opportunity to submit testimony for the
record in support of the National Institutes of Health (NIH) and the
Institute of Education Sciences (IES) budgets for fiscal year 2023.
FABBS represents twenty-seven scientific societies and over fifty
university departments whose members and faculty share a commitment to
advancing knowledge of the mind, brain, and behavior. For fiscal year
2023, FABBS encourages your subcommittee to provide the National
Institutes of Health (NIH) with a budget of at least $49 billion and
the Institute of Education Sciences (IES) within the Department of
Education a budget of $815 million.
national institutes of health
FABBS thanks the subcommittee for the consistent increases to NIH
in recent years. As a member of the Ad Hoc Group for Medical Research
and the Coalition for Health Funding, FABBS recommends at least $49
billion for NIH in fiscal year 2023 and suggests that any funding for
other targeted programs supplement the base budget, rather than
supplant the essential foundational investment in the NIH.
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.
--Office of Behavioral and Social Science Research (OBSSR)
FABBS members are especially grateful for the increase of over $9
million to OBSSR included in the joint explanatory statement for the
fiscal year 2022 appropriations legislation. This growth to the
Office's baseline budget provides OBSSR with consistent and reliable
funding to provide essential support across NIH Institutes and Centers
(ICs).
OBSSR coordinates and promotes basic, clinical, and translational
behavioral and social science research at NIH and plays an essential
role 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 in partnership with ICs. OBSSR co-funds highly rated grants
that the ICs cannot fund alone.
OBSSR is able to leverage investments across the NIH to broadly
improve the quality and effectiveness of federally funded research. We
encourage the committee to once again express its strong support for
this integral office.
--National Institute of Mental Health (NIMH)
FABBS members are particularly interested in NIMH, which serves as
the premier Federal agency responsible for developing a deeper
understanding of and effective interventions to improve mental health
and treat mental illness. We encourage you to provide robust funding
for NIMH in fiscal year 2023 commensurate with any increase to the
overall NIH budget so that the institute can build upon the significant
achievements to advance the behavioral, biomedical, and social research
mission and important initiatives to provide new insights and solutions
to all.
In your recent hearing reviewing the President's budget request for
the Department of Health and Human Services, we were grateful to see a
focus on mental health and bipartisan support for increases in mental
healthcare funding related to both the 988 national suicide prevention
lifeline and Certified Community Behavioral Health Clinics.
To fully capitalize on these bipartisan committee priorities and
improve the mental health of all Americans, we recommend that the
committee continue to prioritize investments in the NIMH.
--Eunice Kennedy Shriver National Institute of Child Health and Human
Development (NICHD)
As a member of the Friends of NICHD, FABBS recommends that NICHD
receive an increase in fiscal year 2023 commensurate with any increase
to the overall NIH budget. NICHD has facilitated extraordinary
achievements in brain and behavioral research with far reaching
implications for public health, maternal, child, and family health, and
learning and language development.
For example, NICHD-funded researchers have recently:
--Shown that infants of mothers in low-income households receiving
monthly cash payments were more likely to show faster brain
activity in a pattern associated with learning and
development at later ages.
--Devised a procedure for amputations below the knee that allows
for sensory feedback from a prosthetic limb, and used
machine learning to improve the interface of brain-
controlled prosthetics, making them easier to use.
--Discovered that a certain plant compound could one day be
administered to expectant mothers as a treatment to improve
cognitive outcomes for people with down syndrome.
--Surveyed child forensic interviewers to develop new benchmarks to
aid in preventing, treating, and reducing childhood abuse
and neglect.
advanced research projects agency for health (arpa-h)
FABBS appreciates the funding for ARPA-H included in fiscal year
2022 appropriations, and we are grateful that this was independent of
the NIH budget. As ARPA-H continues to take shape, we encourage the
subcommittee to ensure that additional appropriations for the Agency
supplement, rather than supplant, funding for NIH.
FABBS was grateful for the opportunity to contribute to OSTP-NIH
listening sessions on the proposed ARPA-H. We suggest that this new
agency will be most effective if it takes a cross-disciplinary approach
to questions that are not adequately addressed by the current
organizational approach of NIH. These include investing in
implementation science to bridge the gap between the latest scientific
advances and medical practice.
institute of education sciences (ies), u.s. department of education
We are grateful for the subcommittee's work to ensure a funding
increase for IES in the fiscal year 2022 omnibus spending agreement. As
members of the Friends of IES, FABBS encourages the subcommittee to
appropriate at least $815 million to IES in fiscal Year2023. This
funding level will allow the Institute to build on the fiscal year 2022
enacted budget to maximize its capacity to advance innovative research,
develop the methodological skills of education researchers, and
continue to support high-quality and trustworthy statistics and
evidence-based resources.
We are especially grateful that the fiscal year 2022 omnibus
provided IES with independent control over staffing. This new
flexibility is key to capitalizing on new investments, and allows the
Institute to be nimble, taking on high-impact approaches to research
and implementation. For example, during the COVID-19 pandemic, IES
launched Operation Reverse the Loss to identify specific and actionable
interventions that can reverse learning losses for clearly identified
populations of students. Ongoing support for dedicated staff will allow
IES to continue its important work studying the Nation's most urgent
education questions and facilitating the implementation of new and
effective strategies.
The Institute recently commissioned a report on the future of
education research from the National Academies of Science, Engineering,
and Medicine (NASEM). The recommendations therein provide an exciting
path forward for the agency, outlining approaches to move the field
forward on issues of critical importance to education policy and
practice and improve learner outcomes for all students. However, the
report finds that ``Given the breadth of what IES is expected to
accomplish as mandated in ESRA [the Education Sciences Reform Act], its
funding for both programmatic activities and staffing has historically
been limited in comparison to other Federal science, research, and
statistical agencies with similar objectives [and] in order to achieve
the overarching vision presented through these recommendations, IES
will require additional investments.''
Thank you for considering this testimony.
FABBS Member Societies:
Academy of Behavioral Medicine Research, American Educational
Research Association, American Psychological Association, American
Psychosomatic Society, Association for Applied Psychophysiology and
Biofeedback, Association for Behavior Analysis International, Behavior
Genetics Association, Cognitive Neuroscience Society, Cognitive Science
Society, Flux: The Society for Developmental Cognitive Neuroscience,
International Congress of Infant Studies, International Society for
Developmental Psychobiology, National Academy of Neuropsychology, The
Psychonomic Society, Society for Behavioral Neuroendocrinology, Society
for Computation 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 College; Boston University;
California State University, Fullerton; Carnegie Mellon University;
Duke University; East Tennessee State University; Florida International
University; George Mason University; George Washington University;
Georgetown University; Harvard University; Indiana University
Bloomington; Johns Hopkins University; Lehigh University; Massachusetts
Institute of Technology; Michigan State University; New York
University; North Carolina State University; The Ohio State University,
Center for Cognitive and Brain Sciences; Pennsylvania State University;
Princeton University; Purdue University; Rice University; Southern
Methodist University; Syracuse University; Temple University; Texas A&M
University; Tulane University; University of Arizona; University of
California, Berkeley; University of California, Irvine; University of
California, Los Angeles; University of California, Riverside;
University of California, San Diego; University of Chicago; University
of Delaware; University of Illinois at Urbana-Champaign; University of
Iowa; University of Maryland, College Park; University of Michigan;
University of Minnesota; University of Minnesota, Institute of Child
Development; University of North Carolina at Greensboro; University of
Oregon; University of Pennsylvania; University of Texas at Austin;
University of Texas at Dallas; University of Virginia; University of
Washington; Virginia Tech; Wake Forest University; Washington
University in St. Louis; Western Kentucky University; 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
Chairman Leahy, Chairwoman Murray, Vice Chairman Shelby, Ranking
Member Blunt, 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 2023 appropriations bill. Florida A&M University (FAMU) is
grateful for the historic support of Congress during the pandemic.
Maintaining or enhancing funding is critical 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 significant support to the University, our students as
well as other institutions of higher education across the Nation.
Florida A&M University, based in the State capital of Tallahassee,
Florida, was founded in 1887 with only 15 students and two instructors.
Today, FAMU offers 95 degree programs to nearly 10,000 students. We are
proud to be the highest ranked among public Historically Black Colleges
and Universities (HBCU) for three consecutive years, according to the
2022 U.S. News and World Report National Public Universities. The
University is 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 undergraduate degrees and 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 enhance 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 the
allocation of resources 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 sustain our
academic, administrative, and fiscal capabilities.
The President's fiscal year 2023 budget requests $402.6 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.
We support the President's fiscal year 2023 budget request of
$102.3 million for the Strengthening Historically Black Graduate
Institutions as well, which funds 5-year grants to provide scholarships
for disadvantaged students, academic and counseling services to improve
student success, and supports infrastructure and facilities
improvements.
FAMU, like other HBCUs, has a critical need for funding to support
equipment upgrades and purchases, construction and renovation of our
facilities, and the 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 the fiscal year 2022 House recommended allocation of
$24.484 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 funding requested would be
used to pay the loan subsidy costs in guaranteed loan authority under
the program. We urge the subcommittee to provide increased funding for
fiscal year 2023, which will allow HBCUs to continue to refinance
previous capital project loans, renovate existing facilities, or build
new facilities in alignment with our peer 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.
Over 60 percent of our enrolled students rely on Pell grants to
attend our institution. As Pell Grants account for less than one-third
of the average cost of attendance at public 4-year universities, we
join many national education associations in requesting an increase in
the maximum individual award to $12,990. By nearly doubling the award,
Congress will provide critical support for economically disadvantaged
college students as we continue to rebound from one of the most
challenging periods in our Nation's history. 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.
National Institutes of Health Research Centers in Minority Institutions
FAMU supports funding at the fiscal year 2022 House recommended
allocation of $88 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, like COVID-19, that disproportionately affect minority
populations. Notably, the employees at the FAMU community testing site
were selected as the Tallahassee Democrat ``Person of the Year'' and
have provided more than 630,000 tests and 25,000 vaccines to the Big
Bend area since April 25, 2020.
Since program inception, the FAMU RCMI Center has greatly benefited
from this program, which has provided critical infrastructure to enable
the College of Pharmacy and Pharmaceutical Sciences | Institute of
Public Health to achieve national prominence and become a competitive
biomedical research center nationally. The RCMI support of FAMU led the
College to implement four doctoral tracks in pharmaceutical sciences,
including pharmacology/toxicology, medicinal chemistry, pharmaceutics,
and environmental toxicology. With RCMI support, our College of
Pharmacy has graduated more than 60 percent of the African A merican
doctoral recipients in the pharmaceutical sciences nationally.
Department of Health and Human Services, Health Resources and Services
Administration, Health Careers Opportunity Program
FAMU supports the fiscal year 2022 House recommended allocation of
$20.5 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 a health or allied health professions school. 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 2023 budget increases funding for
HRSA's Health Professions Training for Diversity Programs, including
the HCOP. Continued funding is critical for these programs that help
address the shortage of underrepresented minorities in health
professions.
We urge the subcommittee to support continued and/or enhanced
funding 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, President, Ph.D.,
Florida A&M University.]
______
Prepared Statement of Florida Agricultural and Mechanical University
Chairman Leahy, Chairwoman Murray, Vice Chairman Shelby, Ranking
Member Blunt, 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 (FY) 2023 appropriations bill. Florida A&M University (FAMU) is
grateful for the historic support of Congress during the pandemic.
Maintaining or enhancing funding is critical 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 significant support to the University, our students as
well as other institutions of higher education across the Nation.
Florida A&M University, based in the State capital of Tallahassee,
Florida, was founded in 1887 with only 15 students and two instructors.
Today, FAMU offers 95 degree programs to nearly 10,000 students. We are
proud to be the highest ranked among public Historically Black Colleges
and Universities (HBCU) for three consecutive years, according to the
2022 U.S. News and World Report National Public Universities. The
University is 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 undergraduate degrees and 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 enhance 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 the
allocation of resources 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 sustain our
academic, administrative, and fiscal capabilities.
The President's FY 2023 budget requests $402.6 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.
We support the President's FY 2023 budget request of $102.3 million
for the Strengthening Historically Black Graduate Institutions as well,
which funds 5-year grants to provide scholarships for disadvantaged
students, academic and counseling services to improve student success,
and supports infrastructure and facilities improvements.
FAMU, like other HBCUs, has a critical need for funding to support
equipment upgrades and purchases, construction and renovation of our
facilities, and the 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 the FY 2022 House recommended allocation of $24.484
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 funding requested would be
used to pay the loan subsidy costs in guaranteed loan authority under
the program. We urge the subcommittee to provide increased funding for
FY 2023, which will allow HBCUs to continue to refinance previous
capital project loans, renovate existing facilities, or build new
facilities in alignment with our peer 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.
Over 60 percent of our enrolled students rely on Pell grants to
attend our institution. As Pell Grants account for less than one-third
of the average cost of attendance at public 4-year universities, we
join many national education associations in requesting an increase in
the maximum individual award to $12,990. By nearly doubling the award,
Congress will provide critical support for economically disadvantaged
college students as we continue to rebound from one of the most
challenging periods in our Nation's history. 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.
national institutes of health research centers in minority institutions
FAMU supports funding at the FY 2022 House recommended allocation
of $88 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, like COVID-19, that disproportionately affect minority
populations. Notably, the employees at the FAMU community testing site
were selected as the Tallahassee Democrat ``Person of the Year'' and
have provided more than 630,000 tests and 25,000 vaccines to the Big
Bend area since April 25, 2020.
Since program inception, the FAMU RCMI Center has greatly benefited
from this program, which has provided critical infrastructure to enable
the College of Pharmacy and Pharmaceutical Sciences | Institute of
Public Health to achieve national prominence and become a competitive
biomedical research center nationally. The RCMI support of FAMU led the
College to implement four doctoral tracks in pharmaceutical sciences,
including pharmacology/toxicology, medicinal chemistry, pharmaceutics,
and environmental toxicology. With RCMI support, our College of
Pharmacy has graduated more than 60 percent of the African American
doctoral recipients in the pharmaceutical sciences nationally.
department of health and human services, health resources and services
administration, health careers opportunity program
FAMU supports the FY 2022 House recommended allocation of $20.5
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
a health or allied health professions school. 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 FY 2023 budget increases funding for HRSA's Health
Professions Training for Diversity Programs, including the HCOP.
Continued funding is critical for these programs that help address the
shortage of underrepresented minorities in health professions.
We urge the subcommittee to support continued and/or enhanced
funding 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 Focused Ultrasound Foundation
Thank you for the opportunity to comment on the National Institutes
of Health (NIH) budget priorities for FY 2023. We provide this
testimony in support of the investment in innovation in health and
medicine, particularly transformative new therapies like focused
ultrasound.
We offer views from the perspective as the only 501(c)(3) medical
research, education and advocacy organization solely dedicated to
advancing the development and clinical adoption of focused ultrasound,
a noninvasive therapeutic medical device technology, for the treatment
of a wide range of medical conditions. FUSF was founded in 2006 by Dr.
Neal Kassell, a world-renowned neurosurgeon who has authored more than
500 publications and was named to the Blue Ribbon Panel of then Vice
President Joe Biden's Cancer Moonshot initiative. Our mission is to
accelerate the development and adoption of evidence-based focused
ultrasound therapy to improve the lives of countless individuals with
serious medical disorders, including essential tremor, Parkinson's
disease, Alzheimer's, chronic pain, various cancers, uterine fibroids,
depression--more than 150 indications in total. We aim to bring focused
ultrasound treatments to patients as quickly as possible, to improve
patient outcomes and lower healthcare costs.
FUSF encourages NIH to seriously examine Federal research
investment in transformative cross-cutting platform technologies that
can offer new treatments across multiple diseases and conditions. An
example of such a technology is focused ultrasound, which offers
unparalleled versatility due to its more than 18 different biological
mechanisms of action, including tissue destruction, anti-cancer immune
response, neuromodulation, localized and targeted drug delivery,
transient opening of the blood-brain barrier, and many others. While
this field of medicine is still emerging, various existing focused
ultrasound applications have demonstrated its potential. With increased
NIH investment, we can build on this knowledge and expand applications
for many other diseases and conditions.
To ensure that NIH delivers on its mission to foster innovative
research for the betterment of patients, reviewers and program managers
must truly understand a broad array of science and technology and be
willing to invest in cross-cutting therapies. Despite extensive
evidence of efficacy for many conditions and the immense potential to
transform treatments for many others, as well demonstrated improvement
to patient outcomes and reduction of healthcare costs, focused
ultrasound is not widely accessible. One reason is the lack of funding
needed for translational research to bring these innovations to
patients. The current nature of funding agencies organized by organ
system and the cross-cutting nature of research in focused ultrasound
often means that reviewers and program officers lack the expertise or
interest to fund these proposals, instead funding more familiar work
deemed more mainstream and less risky. Ensuring that NIH program
managers and reviewers have a wide array of expertise in transformative
and innovative technologies and value high-risk, high-reward
investments will ensure much-needed diversification in our Nation's
publicly funded research.
FUSF also strongly suggests that NIH place a strong focus on
addressing health and healthcare disparities. Women's health issues
continue to be under-represented in terms of Federal research dollar
allocation, with dire consequences. Endometriosis is an example of one
chronic, debilitating condition that needs to be addressed. An
irreversible disease known to cause a wide spectrum of physical and
psychological symptoms from chronic pain to infertility to increased
risk of suicide, endometriosis is regularly mis-diagnosed or diagnosed
up to seven to 9 years after the onset of painful symptoms despite it
impacting 10-20 percent of the overall female population and 5-50
percent among women with infertility. These symptoms are extremely
painful and uncomfortable and range from pain during intercourse and
bowel movements to excessive bleeding. If this chronic pelvic pain is
detected and treated early, laparoscopy surgery may be avoided in favor
of a non-invasive procedure like focused ultrasound, saving patients
from unnecessary and invasive surgery and our healthcare system from
preventable expenditures.
A non-invasive treatment would be a significant improvement over
surgery and would reduce resulting opioid reliance as well as related
costs. However, these advancements can't be realized unless funding for
women's health issues is increased exponentially, particularly for
debilitating conditions like endometriosis. In the case of
endometriosis specifically, this is a significant unmet need as
evidenced by the number of physicians and providers who are asking for
a way to better diagnose and treat these patients. We must bring
medical innovations to all patients and ensure both diversity and
inclusion are incorporated throughout our research, treatment, and
coverage systems.
In sum, investing in transformative, cross-cutting research is
critical during a time when scientific achievements are more numerous
than ever. We must ensure that patients are at the center of our
healthcare system, and that the goal of improved patient outcomes
drives funding decisions across the government landscape. It is crucial
that we invest in innovation to ensure patients everywhere can access
current and future life-changing and often life-saving technology.
Thank you very much for consideration of our comments.
______
Prepared Statement of the Fred Hutchinson Cancer Center
Fred Hutchinson Cancer Center (Fred Hutch) appreciates the robust
and reliable funding Congress has provided for the National Institutes
of Health (NIH) in the past, and strongly urges continued support for
this vital funding moving into the future. Prioritizing NIH funding as
a key national investment helps to establish the United States as a
world leader in health innovation, biomedical research and scientific
advancement, and empowers the education and careers of our next
generation of scientific and health care leaders. Critical investments
in the NIH lead to more discoveries and increased development of
therapies, treatments, and cures, helping patients to live longer and
healthier lives.
For fiscal year (FY) 2023, Fred Hutch urges the subcommittee to
support a program level of at least $49 billion in base funding for the
NIH.
Strong, bipartisan support from the Appropriations subcommittee on
Labor, Health and Human Services, Education and Related Agencies
(Labor-HHS) over the last seven budget cycles has helped NIH to thrive,
yielding a significant number of scientific advances to improve health
outcomes for patients. These scientific advancements include the
lifesaving COVID-19 vaccines that are helping our world to progress
beyond the pandemic. As the fiscal Year2023 appropriations process
continues, Fred Hutch is committed to working with Congress and the
Administration to further bipartisan support for increasing this vital
national investment and to ensure NIH funding remains a top priority.
As with scientific discovery, and aligning with changing needs of
our region, 2022 marks an exciting evolution for Fred Hutch. On April
1, 2022, Fred Hutchinson Cancer Research Center and Seattle Cancer Care
Alliance came together into one, independent entity, to form Fred
Hutchinson Cancer Center (Fred Hutch). This opportunity to clinically
integrate world-class research with one of the top cancer care
hospitals in the Nation will lead to greater advances in adult
oncology--bringing the research bench to the bedside. We anticipate
increased numbers of clinical trials, as well as increased access to
groundbreaking research and clinical care.
Fred Hutch is guided by the mission to eliminate cancer and related
diseases that cause human suffering and death and is now integrated
with the expert clinical care to directly help patients live longer and
healthier lives. 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. To date, performing
more than 17,000 bone marrow transplants makes Fred Hutch one of the
most respected and successful programs in the world.
As the only Dedicated Cancer Center in the Pacific Northwest,
serving patients in five northwestern States, Fred Hutch is actively
identifying and working to fill gaps in cancer care by prioritizing an
increasingly diverse patient population. It is our role to build caring
relationships with all communities, and especially those experiencing
disparities. Strategic outreach in traditionally underserved
communities is one of the many ways Fred Hutch is developing
relationships with our neighbors in all corners of our region.
Mitigating Health Inequities in Clinical Trials. History
demonstrates that racial and ethnic minorities have been
underrepresented in clinical trials and genetic studies. People from
racial and ethnic minorities hold a heavier burden of negative health
and economic impacts, and studies show these same individuals have
higher rates of cancer and are more likely to die from the disease.
Greater inclusion helps to further sharpen precision medicine and
ultimately brings us closer to achieving our mission to find cures for
cancers and diseases in all people--and there is still a lot of work to
be done to improve.
While health inequities have had a disproportionate impact on
racial and ethnic minorities in the United States for a long time, the
COVID-19 pandemic brought these disparities into stark focus,
highlighting social, political, economic, and environmental factors
that play an important role in health disparities. In order to reduce
these disparities and promote inclusion and participation of
individuals from diverse groups in clinical trials, Fred Hutch
leveraged the infrastructure already in place from coordinating the
global vaccine trials for HIV for more than 20 years through the HIV
Vaccine Trials Network (HVTN) to lead operations for the COVID-19
Prevention Network (CoVPN), funded by the National Institute of Allergy
and Infectious Diseases. The CoVPN included five large-scale COVID-19
vaccine efficacy trials with more than 200 clinical trial sites across
the world, which included more than 600,000 volunteers. As a result of
this and ongoing work, the trials for CoVPN were some of the most
diverse in history.
Empowering Early Career Researchers and Other Health Experts. The
focus on health equity underscores all work of Fred Hutch, which
includes building a more diverse and innovative scientific and clinical
workforce. Robust funding for the NIH not only bolsters important
research programs--it secures the future of science. Increases in NIH
funding enable initiatives to reduce barriers to academia and provide
training and education for young scientists, as well as encourage more
culturally inclusive research.
Fred Hutch invests $2 million annually in science education
programs and is currently in the process of expanding to allied health
and other types of opportunities. Scientific internships at Fred Hutch
range from high school and college, as well as mentorship and
development resources for graduate students, postdoctoral fellows, and
early-career faculty. The Science Education Partnership, which started
in 1991, has paired researchers with more than 580 secondary school
science teachers in Washington state through workshops and a summer
professional development program.
Recruitment and Retention of Exceptional Researchers. Fred Hutch
opposes provisions such as directives to reduce salary support for
extramural researchers, that would harm the appeal of academic
research. Policies to cut salary support would undermine Fred Hutch's
ability to recruit and retain the talented researchers that keep our
U.S. institutions thriving. Emphasized in the current workforce
climate, there are countless desirable options for researchers and
health care experts to pursue and their retention is essential to
maintain our Nation's innovation ecosystem.
The partnership between the NIH and the research institutions and
scientists across America is highly productive. The Federal Government
has an irreplaceable role in supporting biomedical research, with no
other entity willing or able to provide the broad and sustaining
funding that leads to innovative breakthroughs. Fred Hutch depends on
NIH funding to conduct basic, translational, clinical, public health,
and infectious disease research, as well as the ability to respond
rapidly and expertly to the needs of our Nation, such as during the
COVID-19 pandemic. Sustained and robust funding for the NIH will
contribute to our efforts to support future pandemics and numerous
other global health challenges for the years ahead.
With President Biden's announcement and reinvigoration of the
Cancer Moonshot, Fred Hutch and the larger cancer community stand
poised to accelerate work already underway. Increasing funding for NIH
as well as the creation of the Advanced Research Projects Agency for
Health (ARPA-H) will help to achieve our goals. Consistent with our
mission and values, Fred Hutch will continue working to increase access
to the highest quality cancer treatments and services for all patients.
We will continue to hone scientific innovation, such as telehealth and
data science, to increase prevention efforts across entire populations
and also to connect with individual patients--in ways that ultimately
improve cancer outcomes for everyone.
Fred Hutch appreciates the Labor-HHS subcommittee for your
continued leadership and dedication to ensuring the continued and
robust funding for the NIH. Thank you for the opportunity to share our
recommendation to provide at least $49 billion in fiscal Year2023 for
the NIH base program, in addition to funding for ARPA-H. As our Nation
continues to rebuild and looks ahead to prepare for potentially future
pandemics, now is the time to rededicate the commitment to science and
support for efforts to seize upon the abundance of scientific
opportunities.
[This statement was submitted by Thomas J. Lynch Jr., MD, President
and
Director, Fred Hutchinson Cancer Center.]
______
Prepared Statement of the Friends of HRSA
The Friends of HRSA coalition is a nonpartisan coalition of nearly
170 national organizations representing tens of millions of public
health and health care 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 $9.8 billion for the Health Resources
and Services Administration in FY 2023. We are grateful for the
increases provided for HRSA programs in FY 2022 and for the emergency
supplemental funding to battle the COVID-19 pandemic, but HRSA's
discretionary budget authority is far too low to effectively address
the Nation's current public health and health care needs. We urge
Congress to continue efforts to build upon these investments to
strengthen all of HRSA's programs.
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 health care
and services; fostering a health care 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 health care 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 health care.
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 health care services for underserved areas
and populations. AHECs play an integral role to recruit providers into
primary health careers, diversify the workforce and develop a passion
for service to the underserved among future providers.
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 health care challenges
including the rise in maternal mortality, the severe shortage of health
professionals, the high cost of health care, and behavioral health
issues related to substance use disorder--including opioid misuse. We
recommend Congress build upon the important increases they provided for
HRSA programs in FY 2022 and provide at least $9.8 billion for HRSA's
total discretionary budget authority in FY 2023. Additional funding
will allow HRSA to pave the way for new achievements and continue
supporting critical HRSA programs, including:
--HRSA supports more than 13,500 community health center sites which
provide high quality primary care services to nearly 29 million
people and reduce barriers such as cost, lack of insurance,
distance and language for their patients.
--HRSA supports the health workforce across the entire training
continuum by strengthening the workforce and connecting skilled
professionals to communities in need. Programs such as the
Public Health Training Centers assess and respond to critical
workforce needs through training, technical assistance and
student support.
--HRSA's maternal and child health programs support patient-centered,
evidence-based programs that optimize health, minimize
disparities and improve health promotion and health care access
for medically and economically vulnerable women, infants and
children.
--HRSA's Ryan White HIV/AIDS Program provides medical care and
treatment services to over half a million people living with
HIV. Ryan White programs effectively engage clients in
comprehensive care and treatment, including increasing access
to HIV medication, which has resulted in 89.4 percent of
clients achieving viral suppression, compared to just 65.5
percent of all people living with HIV nationwide.
--HRSA supports healthcare systems and programs that access and
availability of lifesaving bone marrow, cord blood and donor
organs for transplantation. Additionally, the Healthcare
Systems Bureau supports poison control centers, which
contribute to significantly decreasing a patient's length of
stay and save the Federal Government $1.8 billion each year in
medical costs and lost productivity.
--HRSA supports community- and State-based solutions to improve rural
community health by focusing on quality improvement, increasing
health care access, coordination of care and integration of
services that are uniquely designed to meet the needs of rural
communities.
--The Title X Family Planning program reduces unintended pregnancy
rates, limits transmission of sexually transmitted infections
and increases early detection of breast and cervical cancer by
ensuring access to family planning and related preventive
health services to millions of women, men and adolescents.
--HRSA also supports training, technical assistance and resource
development to assist public health and health care
professionals to better serve individuals and communities
impacted by intimate partner violence.
--HRSA is well positioned to respond to infectious disease outbreaks
and has been active in the COVID-19 pandemic response, awarding
billions of dollars to health centers to administer COVID-19
tests and reimbursing over $18 billion to providers for testing
and treatment provided to uninsured individuals.
The nation faces a shortage of health professionals and a growing
and aging population which will demand more health care. Additionally,
the COVID-19 pandemic reaffirmed the critical nature of a robust
workforce in responding to public health emergencies. HRSA is well
positioned to address these issues and to continue building on the
agency's many successes, but a stronger commitment of resources is
necessary to effectively do so. We urge you to consider HRSA's central
role in strengthening the Nation's health and support a funding level
of at least $9.8 billion for HRSA's discretionary budget authority in
FY 2023.
[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
Chair Murray, Ranking Member Blunt, and Members of the
subcommittee, thank you for the opportunity to submit written testimony
on behalf of the Friends of IES, a coalition of scientific and
professional societies, K-12 and higher education organizations,
universities, and independent research organizations committed to
supporting the mission of IES and the use of research and statistics.
We recommend at least $815 million for the Institute of Education
Sciences (IES) in the FY 2023 Labor, Health and Human Services, and
Education Appropriations bill.
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. Research supported
by NCER and NCSER have been incorporated in classrooms to enhance
instruction and support students' academic and non-academic outcomes.
Recent examples include the Intelligent Tutoring System for the
Structure Strategy, used by middle school students; Assessment-to-
Instruction, which has resulted in a partnership between Learning
Ovations and Read Memphis that is supporting the literacy development
of young readers; and IES-supported collaborative work that resulted in
the development of the Washoe County School District Social and
Emotional Competency Assessments.
Our member organizations rely on IES to support vital research that
addresses many of the most important issues in our Nation's schools. We
are deeply thankful for the increases provided to IES in recent years
to further invest in the education research and statistical
infrastructure and to respond to the impact of COVID-19 in exacerbating
pre-existing learning gaps.
FY 2022 appropriations for IES represent less than one percent of
the total discretionary funding for the Department of Education.
Similar to the investment that the Federal Government makes in medical
research at the National Institutes of Health to advance health
outcomes, the investment in IES is essential to address persistent
challenges in education. A recent report from the National Academies of
Science, Engineering, and Medicine (NASEM) highlighted an observation
regarding IES funding in the Federal research landscape: ``Given the
breadth of what IES is expected to accomplish as mandated in ESRA, its
funding for both programmatic activities and staffing has historically
been limited in comparison to other Federal science, research, and
statistical agencies with similar objectives.''(p. 3-3) \1\ Providing
at least $815 million for IES in fiscal Year2023 would serve as one
important step toward more fully supporting the education research and
statistical infrastructure essential to education policy and practice.
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\1\ National Academies of Sciences, Engineering, and Medicine.
2022. The Future of Education Research at IES: Advancing an Equity-
Oriented Science. Washington, DC: The National Academies Press. https:/
/doi.org/10.17226/26428.
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IES remains constrained in its flexibility to fully fund emerging
research areas and scale up promising interventions and resources.
About one of every 10 grant proposals receives funding support,
limiting the ability of IES to tackle pressing questions in education.
With appreciation for the boost provided in FY 2022, additional funding
for Research, Development, and Dissemination (RD&D) is essential to
support needed research in foundational and emerging topics, including
measures and assessments in career and technical education; the
development and testing of education technology products that can
personalize instruction; and approaches to teacher recruitment,
retention, certification, assessment, and compensation. RD&D funding is
critical to help improve education and better support the achievement
of our Nation's students. Additional investment in RD&D is essential to
the support of new high-risk, high-reward research with the potential
for transforming education, along with the synthesis of research
findings for use by all education stakeholders.
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
works with stakeholders to provide relevant data through administrative
and longitudinal surveys, but limited funding and staff resources over
the past decade has resulted in constraining NCES in its capacity to
meet the real-time data needs of researchers and policymakers.
Additional funding for NCES would provide greater flexibility to
develop surveys such as the School Pulse Panel and more quickly release
important educational indicators. Restoring purchasing power NCES has
lost over the past decade would also expand the agency's capacity to
analyze data on timely education issues and link administrative
education data to health and employment data for evidence-based
policymaking and to understand the broader context of outcomes.
NCES importantly provides the funding support and infrastructure
for the Statewide Longitudinal Data Systems (SLDS) program, providing
critical investment for States to link K-12, postsecondary, and
workforce systems to gain a better understanding of education and
workforce outcomes. This work is particularly important for questions
of national interest, such as interest and persistence in STEM areas to
develop needed workforce talent. IES is also emphasizing the research
use of SLDS to measure the effects of interventions on long-term
student outcomes and in examining the impact of State education policy
actions in supporting learning recovery, such as the Additional Days
School Year initiative in Texas. Additional resources for SLDS can
support States in linking data across education and workforce systems.
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.
During the pandemic, the RELs have provided a wide range of evidence-
based resources to guide teachers, school leaders, and State and local
officials on COVID-19 response. This work is all driven by the State
education agencies and other stakeholders in the regions. Additional
funding is needed to research and support growing local and regional
needs to respond to the impact of the pandemic on academic, social and
emotional learning.
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, but currently
has a budget that has remained relatively flat since FY 2014 and still
below its FY 2010 funding level. Due to limited funding, NCSER did not
run competitions in FY 2022 for its annual special education research
and training grants.
Research funded by NCSER has resulted in programs such as those
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.
We also appreciate the inclusion of language in recent
appropriations bills calling for the Department of Education to address
how it will ensure adequate staffing levels, including in IES. We are
particularly grateful for the inclusion of a new program administration
line item within IES in the FY 2022 omnibus appropriations bill, which
will provide additional flexibility for IES to hire staff to support
the increased work that comes with added funding. A recent report from
NASEM noted the specific staffing challenges that NCES has faced,
seeing the attrition of more than 20 staff positions between FYs 2015
and 2021. This has resulted in the discontinuation of 12 programs.\2\
We look forward to your continued oversight on this issue to ensure IES
has the resources to employ the necessary staff to effectively carry
out its mission.
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\2\ National Academies of Sciences, Engineering, and Medicine.
2022. A Vision and Roadmap for Education Statistics. Washington, DC:
The National Academies Press. https://doi.org/10.17226/26392.
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To this end, we recommend that the committee provide IES at least
$815 million in FY 2023. With continued emphasis on evidence-based
policy and practice as our Nation continues to recover from the
pandemic, IES plays an essential role in responding to key research
questions, disseminating data to inform decisions, and developing
resources to guide learning and instruction. Sustained, robust
investment in the education research and statistical infrastructure at
IES is necessary to support the success of our Nation's students,
teachers, and education leaders.
[This statement was submitted by Felice J. Levine, Chair, Friends
of the Institute of Education Sciences.]
______
Prepared Statement of the Friends of the National Institute on Aging
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 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.
We are writing to request that Federal resources continue to be
dedicated to sustaining and enhancing timely and promising aging
research at NIA and across NIH.
Specifically, FoNIA requests:
--no less than $49 billion in fiscal year 2023 for base spending at
NIH for current institutes and operations, which corresponds
with the overall recommendation of the Ad Hoc Group for Medical
Research;
--continued efforts in establishing the Advanced Research Projects
Agency for Health (ARPA-H) at NIH. However, investment in ARPA-
H should not come at the cost of the existing NIH institutes
and centers conducting and supporting research on aging. We
support an increase of $4 billion for ARPA-H to supplement the
core investment.
--a minimum increase of $226 million specific to research on
Alzheimer's disease and related dementias (ADRD). NIA is the
primary Federal agency supporting and conducting Alzheimer's
disease and related dementias research;
--an increase of $60 million to support the Brain Research through
Advancing Innovative Technologies (BRAIN) Initiative.
NIA sponsors and conducts the vast majority of Federal aging-
related research, and this pioneering science contributes significantly
to the improved care and quality of life for all of us as we age. A key
NIA priority is translating research into better and more efficient
care through the development of effective interventions that are
disseminated to health care 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.
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.
NIH's Brain Research through Advancing Innovative Technologies
(BRAIN) Initiative works to develop a dynamic picture of how neurons
act, both individually and together in circuits. The initiative
revolutionizes our understanding of the human brain and provides
insight into how to treat, prevent and cure brain disorders. In
addition to NIH, this public-private partnership involves other Federal
agencies such as the National Science Foundation (NSF), Defense
Advanced Research Projects Agency (DARPA), Intelligence Advanced
Research Projects Activity (IARPA), the Food and Drug Administration
(FDA) and the Department of Energy (DOE).
Medical and health research and development investment accounts for
5.9 percent of overall health spending in the U.S., or just under 6
cents of each health care dollar according to a recent report by
Research!America.\1\ The Science & Technology Action Committee also
recently estimated that the U.S. should double its R&D investment by
2026 in order to remain a global competitor in science, technology,
engineering, and math.\2\ As the world's premier public funder of
medical research, the NIH is a critical international leadership, and
robust annual growth in support for NIH will be key to achieving these
objectives.
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\1\ US Investments in Medical and Health Research and Development
2016-2020. https://www.researchamerica.org/sites/default/files/
Publications/Research%21America-
Investment%20Report.Final.January%202022.pdf. Accessed 5/9/2022.
\2\ Science & Technology Action Committee. (2022 January). Briefing
Paper: A Roadmap for Investment in Science and Technology. https://
sciencetechaction.org/news-item/white-paper-a-roadmap-for-investment-
in-science-and-technology/.
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Lastly, NIH funding provides a vital economic boost to local
economies. Most of NIH/NIA funding is distributed as grants to
universities and other research institutions across the United States,
and acts as an economic engine and multiplier in local and regional
communities. According to United for Medical Research, total FY21 NIH
research spending supported more than 552,000 American jobs and
generated nearly $94.2 billion in economic activity, in all 50
States.\3\
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\3\ NIH's Role in Sustaining the U.S. Economy 2022 Update. https://
unitedformedicalresearch.org/wp-content/uploads/2022/03/UMR_NIHs-Role-
in-Sustaining-the-U.S.-Economy-FY21.pdf. Accessed 4/28/22.
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Thanks to your support, NIH/NIA is continuing to accelerate
scientific discoveries which will benefit us all as we age. Only
through continued, and meaningful investments in NIH/NIA will it be
possible to 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 Patricia M. D'Antonio, BSPharm,
MS, MBA, BCGP, Chair, Friends of the National Institute on Aging.]
______
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 substance use
disorders 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 2023 Labor, Health and Human Services
Appropriations bill, Friends of NIDA joins with the Ad Hoc Group for
Medical Research in recommending a program level of at least $49.048
billion for the base budget of the National Institutes of Health (NIH),
which would represent an increase of $4.1 billion over the comparable
Fiscal 2022 funding level. For the National Institute on Drug Abuse
(NIDA), Friends of NIDA encourages the Committee to provide at least
the President's recommended funding level of $1.843 billion, which
would represent an increase of $248 million over the comparable Fiscal
2022 funding level for the Institute.
Friends of NIDA also supports the proposal included in the
President's Fiscal Year 2023 budget to change the name of the National
Institute on Drug Abuse to the National Institute on Drugs and
Addiction.
We also respectfully request the inclusion of the following NIDA
specific report language.
Opioid Initiative. The Committee continues to be concerned about
the high mortality rate due to the opioid epidemic and
appreciates the important role that research plays in the
various Federal initiatives aimed at this crisis. The Committee
is also aware of the most recent provisional data from the
Centers for Disease Control and Prevention that shows opioid
overdose fatalities were predicted to exceed 100,000 in the 12-
month period ending in June 2021, with the primary driver being
the increased overdose deaths involving synthetic opioids,
primarily illicitly manufactured fentanyls. More research is
needed to find new and better agents to prevent or reverse the
effects caused by this class of chemicals and to provide
improved access to treatments for those addicted to these
drugs. To combat this crisis the Committee has provided within
NIDA's budget no less than $405,400,000 for the Institute's
share of the HEAL Initiative and in response to rising rates of
stimulant use and overdose, the Committee has included language
expanding the allowable use of these funds to include research
related to stimulant use and addiction.
Methamphetamine and Other Stimulants. The Committee is concerned
that, according to provisional data released by the Centers for
Disease Control and Prevention, over 45,000 overdose deaths
involved drugs in the categories that include methamphetamine
and cocaine in the 12-month period ending in June 2021, an
increase of 25 percent in a single year. The sharp increase has
led 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. No FDA-approved
medications are available for treating methamphetamine and
other stimulant use disorders. 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 limits 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 and antidotes for
their harmful effects, we should be lowering regulatory and
other barriers to conducting this research. The Committee
appreciates NIDA's completion of a 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 to sources of
marijuana including dispensary products.
COVID Pandemic and Impact on Substance Use Disorders. The
Committee is acutely aware of the risks that the ongoing COVID-
19 pandemic poses to individuals with substance use disorders.
According to the Centers for Disease Control and Prevention,
drug overdose deaths accelerated during the pandemic, and were
predicted to exceed 100,000 in the 12-month period ending in
June 2021, the highest number of overdose deaths ever recorded
in a 12-month period. Moreover, research supported by the
National Institute on Drug Abuse found that individuals with
substance use disorders are at increased risk for COVID-19 and
its more adverse outcomes. The Committee commends NIDA for
conducting research on the adverse impact of the pandemic on
SUDs and encourages the Institute to continue to support
research on these issues.
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 area, 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. The Committee
recommends that NIDA increase its support for the education of
scientists and practitioners to find improved prevention and
treatments for substance use disorders.
Electronic Cigarettes. The Committee understands that electronic
cigarettes (e-cigarettes) and other vaporizing equipment are
increasingly popular among adolescents, and requests that NIDA
continue to fund research on the use and consequences of these
devices.
In addition, we request the following report language within the
Office of the Director account:
The HEALthy Brain and Child Development (HBCD) Study. The
Committee recognizes and supports the NIH HEALthy Brain and
Child Development Study, which will establish a large cohort of
pregnant women and follow them and their children up to age 10
to characterize the influence of a variety of factors on
neurodevelopment and long-term outcomes. The study aims to
enroll approximately 7,500 women from 25 sites across the US,
including regions of the country significantly affected by the
opioid crisis. Participants will include women from the general
population of pregnant women to assess normative development;
those who have or are using opioids and/or other substances
during their pregnancy; and women from comparable environments
to the latter, but who have not used substances during their
pregnancy. 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 illicit substance use, mental disorders, and other
behavioral and developmental problems. The Committee recognizes
that the HBCD Study is supported in part by the NIH HEAL
Initiative, and NIH Institutes, Centers, and Offices (ICOs),
including OBSSR, ORWH, NIMHD, NIBIB, NIMHD, NIEHS, NICHD,
NINDS, NIAAA, NIMH, and NIDA, and encourages additional NIH
support for this important study.
Marijuana Research. The Committee is concerned that marijuana
policies on the Federal level and in the States (medical
marijuana, recreational use, etc.) are being changed without
the benefit of scientific research to help guide those
decisions. NIH 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.
Substance use disorders (SUD) are 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 SUD as a
chronic, often-relapsing disorder -this new knowledge has helped to
correctly emphasize the fact that SUD 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
fatalities due to synthetic fentanyl, as well as continued illicit use
of prescription opioids. Our knowledge of how drugs work in the brain,
their health consequences, how to treat people with SUDs, and what
constitutes effective prevention strategies has increased dramatically
due to research. However, because the number of individuals who are
affected is still rising, we need to continue the work until this
disease is both prevented and treated effectively and compassionately.
We understand that the fiscal year 2023 budget cycle will involve
setting priorities and accepting compromise, however, in the current
climate we believe a focus on SUDs deserves to be prioritized
accordingly. Thank you for your support for the National Institute on
Drug Abuse.
______
Prepared Statement of the Friends of NICHD
I write on behalf of the Friends of NICHD, a coalition of more than
100 organizations representing patients, providers, scientists, and
caregivers who are united in our support for ensuring the health and
well-being of women, children, families, and people with disabilities
through research funded by the Eunice Kennedy Shriver National
Institute of Child Health and Human Development (NICHD) and the
National Institutes of Health (NIH). We urge the subcommittee to
provide NICHD with $1.816 billion in Fiscal Year (FY) 2023, an increase
of $133 million over FY 2022. We also respectfully ask the subcommittee
to maintain its commitment to increasing funding for the National
Institutes of Health (NIH) by providing $49 billion in fiscal Year2023
and give special attention to ensuring that overall funding increases
for the NIH are shared evenly across the agency.
We are pleased to support the extraordinary work of NICHD to meet
the objectives of its biomedical, social, and behavioral research
mission, including research on child development before and after
birth; women's health throughout the life cycle; maternal, child, and
family health; learning and language development; reproductive biology;
population health; and medical rehabilitation. By enacting our funding
request, Congress can ensure that NICHD's base budget grows
proportional to that of its counterpart institutes and the institute
can build upon the initiatives detailed below to provide new insights
and solutions to benefit women, children, and families in your
districts and States.
COVID-19: NICHD has played a key role in understanding the impact
of the COVID-19 pandemic on the institute's populations, including
pregnant and postpartum women, children and adolescents, people with
intellectual and developmental disabilities, and people with physical
disabilities and mobility impairments. This work includes intramural
research studies, collaborations with other NIH institutes and centers,
and major undertakings like the Gestational Research Assessments for
COVID-19 (GRAVID) study and the Predicting Viral-Associated
Inflammatory Disease Severity in Children with Laboratory Diagnostics
and Artificial Intelligence (PreVAIL kIds), which are advancing our
knowledge of understudied COVID-19 research questions. For instance,
NICHD is leading research to understand long COVID in children and
pregnant women, develop evidence-based COVID-19 mitigation measures to
allow children with special health care needs to remain in school
safely, and identify effective strategies to improve COVID-19 vaccine
uptake. The institute also continues to advocate for inclusion of its
key populations in major trans-NIH COVID-19 research programs funded by
Congress.
Maternal Mortality: The Pregnancy and Perinatology Branch, through
networks including the Maternal-Fetal Medicine Units (MFMU) Network,
supports research to improve the health of women before, during, and
after pregnancy. Maternal mortality rates remain unacceptably high in
the United States and significant racial and ethnic inequities persist.
In recent years, NICHD has led the Implementing a Maternal health and
PRegnancy Outcomes Vision for Everyone (IMPROVE) Initiative, which
seeks to eliminate disparities among populations with greater rates of
maternal mortality and morbidity. With additional funding, NICHD can
support additional research to identify ways to improve maternal and
infant health.
Data on Pediatric Enrollment in NIH Trials: NIH requires
investigators to submit deidentified demographic data on study
participants, including age at enrollment. It is important for NIH to
analyze and publicly report on this data to ensure that all
populations, including children, benefit from research. This data
should be used proactively NIH-wide to address recruitment issues in
ongoing studies in real time and to drive forward the inclusion of
individuals across the lifespan, including children. NICHD should play
a leading role in the implementation of this policy vis-a-vis age.
Infant and Childhood Health: Through the Best Pharmaceuticals for
Children Act (BPCA), NICHD funds the study of old, off-patent drugs
important to children but inadequately studied in pediatric
populations. The BPCA NIH program has been successful in accomplishing
its intended purpose, leading to updated pediatric labeling in 17
drugs. However, the program has been flat funded at $25 million since
it was originally authorized in 2002. This funding level is
insufficient to meet needs, particularly when accounting for biomedical
research inflation, and has prevented NIH from funding additional drug
trials in children. Additionally, BPCA NIH has never received a direct
appropriation from Congress as authorized by law but rather has been
funded by contributions from NIH institutes and centers. We urge
increased, dedicated support from Congress to ensure this program can
fund additional studies to improve pediatric drug labeling to provide
clinicians with needed guidance for drugs prescribed in children. We
also strongly support NICHD's ongoing research into the causes and
prevention strategies for the major causes of death in infancy and
childhood, including sudden unexpected infant death, accidents, and
suicide.
Behavioral Health Research: NICHD supports a range of research on
child development and behavior and has made great progress developing
sophisticated tools to measure children's cognitive, emotional, and
social functioning. To build on these successes, we encourage more
integrated behavioral and biobehavioral work on child developmental
trajectories, across infancy, childhood, and adolescence, in both
normative and at-risk environments, across diverse contexts (school,
home, and community) and including underrepresented and vulnerable
groups. More research is also needed on integrated behavioral health in
primary care settings and the impact of behavioral interventions on
mental health, physical health, and quality of life. Child health would
also benefit from additional work on the role of technology and social
media to support optimal development in children, including those with
disabilities, and increased access to and engagement with effective
psychological and behavioral interventions for childhood conditions.
Poverty and Child Health: Poverty can be especially detrimental in
childhood and adolescence, leading to adverse impacts on physical
health, mental health, social well-being, cognitive and emotional
development, and the acquisition of motor and language skills. NICHD is
in the unique position to examine the biological, psychological,
social, cultural, and environmental factors that impact the developing
child in high-poverty environments--including challenges due to chronic
stress, neighborhood safety, school environments, family health status,
education, job instability, unstable family structures, and substandard
living conditions--and to evaluate interventions aimed at improving the
developmental trajectories of these children.
Reproductive Sciences: Research on the basic biological mechanisms
of reproduction is a crucial foundation for all NICHD's work.
Understanding reproductive biology and associated biological phenomena
provides the foundation for innovative medical therapies and
technologies and improves existing treatment options for gynecologic
conditions. Often, this research focuses on serious conditions that are
overlooked and underfunded, even though they impact many women. Future
work could address infertility and the need for treatments for
endometriosis, polycystic ovarian syndrome (PCOS) and uterine fibroids.
Pelvic Floor Disorders Network (PFDN): Female pelvic floor
disorders, which affect 25 percent of American women, represent a major
public health burden with high prevalence, impaired quality of life,
and substantial economic costs. The PFDN conducts research to improve
treatment of these painful gynecological conditions. Current research
aims to improve female urinary incontinence outcome measures and ensure
high-quality outcomes.
PregSource: NICHD's PregSource\TM\ Initiative enables pregnant
women to track their health data from gestation to early infancy and
access evidence-based information about healthy pregnancies. It will
also allow researchers to utilize aggregated data and potentially
recruit participants for clinical trials so that knowledge gaps can be
eliminated and care for pregnant and post-partum women can be improved.
Task Force Specific to Research in Pregnant Women and Lactating
Women (PRGLAC): In 2018, the NICHD-led PRGLAC Task Force submitted
recommendations to Congress on opportunities to achieve broader
inclusion of pregnant and lactating women in research and expand the
workforce of clinicians and researchers with expertise in obstetric and
lactation pharmacology and therapeutics. In 2020, the Task Force
released a second report with a detailed plan to implement those
recommendations. We encourage NICHD to continue activities to advance
PRGLAC recommendations in the coming year.
NIH Pediatric Research Consortium (N-PeRC): N-PeRC is an NICHD-led,
trans-NIH initiative that aims to harmonize pediatric research and
training activities across the NIH. N-PeRC capitalizes on pediatric
expertise at the NIH by enabling collaboration to explore gaps in the
overall pediatric research portfolio and share best practices to
advance science. N-PeRC has played a vital role throughout the COVID-19
pandemic in identifying key child and adolescent research needs related
to SARS-CoV-2.
Human Development, Infancy Through Adulthood: NICHD supports
research on infant-through-adult development, including how father-
child relationships and co-parenting positively impacts children's
socio-emotional development and decreases behavior problems; children's
adjustment after the birth of a sibling; pathways and outcomes
associated with mothers' postseparation co-parenting relationships,
with a particular focus on experiences of intimate partner violence and
negative outcomes; and the health and well-being across three
generations of lesbians, gay men, and bisexuals.
Intellectual and Developmental Disabilities Research Centers
(IDDRC): The IDDRCs are a critical national resource for basic research
into the genetic and biological basis of human brain development,
greatly improving our understanding of the causes of developmental
disabilities and contributing to the development and implementation of
evidence-based practices by evaluating the effectiveness of biological,
biochemical, and behavioral interventions. These centers have
contributed to new treatments for genetic disorders through the study
of intellectual and developmental disabilities, such as Everolimus for
epilepsy in TSC. We must build on progress in understanding and
treating this class of disorders that affect so many. We urge resources
and support for the IDDRCs for research infrastructure and expansion of
cores to conduct basic and translational research to develop effective
prevention, treatment and intervention strategies for children and
adults with developmental disabilities.
Preterm Birth: NICHD supports a comprehensive research program on
the causes, prevention and treatment of preterm birth, the leading
cause of infant mortality and intellectual and physical disabilities.
Research shows the survival rate and neurological outcomes may be
improving for very early preterm infants, but continued prioritization
is needed through extramural preterm birth prevention research, the
MFMU Network, the Neonatal Research Network, and intramural research
program. Robust funding is needed for research to determine the complex
interaction of behavioral, social, environmental, genetic, and
biological influences on preterm birth with the goal of developing the
interventions necessary to decrease prematurity.
Population Dynamics: The NICHD Population Dynamics Branch supports
research on how population change affects the health, development, and
well-being of children and their families. Longitudinal surveys, such
as the Fragile Families and Child Wellbeing Study, have demonstrated
the role that family stability and parental involvement play in the
long-term health and development of children, facilitating tremendous
progress in the population sciences. NICHD also supports the Population
Dynamics Centers Research Infrastructure Program, which supports
research and research training in demographic or population research.
These centers focus on research such as family demography and
intergenerational relationships; education, work, and inequality;
population health; and reproductive health. NICHD also supported a
groundbreaking study showing that infants of mothers in low-income
households that received monthly cash payments were more likely to show
faster brain activity in a pattern associated with learning and
development at later ages.
Male Infertility: Male infertility is another relevant area of
inquiry that would benefit from additional NICHD-sponsored research.
For instance, the biological mechanisms associated with common causes
of male infertility, such as varicoceles, remain poorly understood.
These research domains represent important opportunities to develop
better treatments for male infertility.
[This statement was submitted by Matthew Mariani, 2022 Chair,
Friends of NICHD and Policy Associate, Federal Advocacy, American
Academy of Pediatrics.]
______
Prepared Statement of the FSHD Society
Honorable Chairwoman Murray, Ranking Member Blunt, and
distinguished members of the subcommittee, thank you. We are requesting
the FY 2023 appropriation of an amount of $25 million for the agency
U.S. DHHS National Institutes of Health (NIH) to sustain and continue
its research program on facioscapulohumeral muscular dystrophy
(hereafter called FSHD). We are requesting an additional $5 million for
specifically targeted FSHD research through the NIH as requested
herein.
Madam Chairman, this is my sixty-third testimony before the U.S.
Congress' Appropriations subcommittee on this matter. I have been
professionally engaged in FSHD research since 1987, with a focus on
funding research on the fundamental pathophysiology, molecular biology
and genetics of the disease. I am co-founder, past- Chairman, -
President & CEO, and -CSO of FSHD Society, and have been involved in
the evolution and design of FSHD research, gene mapping and genetics
more or less from its inception to the present. My work and the FSHD
Society's funding spans nearly every research lab working on FSHD, the
tactical and strategic planning that have led to understanding how
FSHD1\1\ and FSHD2,\2,3\ work, Muscular Dystrophy Community Assistance,
Research and Education Amendments of 2001 (MD-CARE Act, Public Law 107-
84), advocacy and policy, and the relationship of the scientific
community to the larger societal context in which FSHD is embedded.
I am approaching near thirty years of testifying as a patient with
FSHD for Appropriation of funding for FSHD. I have had this disease for
twice that time. That is a long time to live with a disease of this
burden. I have now seen, experienced the entire effects, and borne
almost the full brunt of what FSHD can do to you. FSHD is a heritable
disease and one of the most common neuromuscular disorders with a
prevalence of 1:8,000.\4\ It affects 934,000 children and adults of
both sexes worldwide. FSHD is characterized by progressive loss of
skeletal muscle strength that is asymmetric in pattern 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 any skeletal muscle, it can bring with it
respiratory failure and breathing issues,\5\-\7\ mild-
profound hearing loss,\8\ eye problems and cardiac bundle blockage and
arrhythmias.\9,10\ FSHD causes significant disability and death
according the U.S. Centers for Disease Control and Prevention (CDC),
National Center on Birth Defects and Developmental Disabilities,
Atlanta, Georgia and others.\11,12\
The NIH is currently the principal worldwide source of funding of
biomedical research on FSHD. Currently annual funding specifically
targeted for FSHD listed in NIH RCDC is $10 million. Given the
remarkable advances and momentum in FSHD research in the past 8 years;
it is appalling that FSHD funding has not grown according to NIH RCDC.
This indicates a mismatch between NIH funding mechanisms and the
external community working on FSHD.
FSHD RESEARCH DOLLARS & FSHD AS A PERCENTAGE OF TOTAL NIH MUSCULAR DYSTROPHY FUNDING
[Dollars in millions]
--------------------------------------------------------------------------------------------------------------------------------------------------------
Fiscal Year 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 2020 2021e 2022e
--------------------------------------------------------------------------------------------------------------------------------------------------------
All MD ($ millions).......................... $86 $75 $75 $76 $78 $77 $79 $81 $81 $83 $95 $97 $102
FSHD ($ millions)............................ $6 $6 $5 $5 $7 $8 $9 $11 $11 $10 $9 $9 $10
FSHD (% total MD)............................ 7% 8% 7% 7% 9% 10% 11% 14% 14% 12% 9% 9% 10%
--------------------------------------------------------------------------------------------------------------------------------------------------------
Sources: NIH/OD Budget Office & NIH OCPL & NIH RePORT RCDC (e=estimate, a=actual)
Currently active projects listed in NIH RePORTer as having
application to FSHD are $17.507 million FY 2022 (actual 04May2022), a
17.2% portion of the estimated $102 million spent on all muscular
dystrophies. A year ago at this time in fiscal year 2021 the NIH
portfolio of active projects was $16.554 million (actual 23June2021), a
17.1% portion of the estimated $97 million spent on all muscular
dystrophies. (source: NIH Research Portfolio Online Reporting Tools
(RePORT) keyword `FSHD or facioscapulohumeral or landouzy-dejerine').
In my role, I provide initiator and seed funding to bring new ideas
and researchers online and am asked to evaluate and compare the various
research projects we have funded and understand their commonalities and
differences. I have, if I had to estimate, made a fairly extensive
study of five to six hundred FSHD projects and proposals. My effort to
solve FSHD has been persistent in yielding refined advances, it is
novel and original, and is clearly driven by an overall sense of goals
and concepts that are meaningful to patients and their families. The
research we've started is forward-looking, as illustrated by the number
of industry and philanthropic partners/researchers that have picked up
on this seminal work and contributed to it.
FSHD is associated with epigenetic changes on the tip of human
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 \13\-\16\. DUX4 is a
transcription factor that kick starts the embryonic genome during the
2- to 8-cell stage of development.\17\-\19\ Ectopic
expression of DUX4 in skeletal muscle is associated with the disease
and the disease's pathophysiology that leads to muscle death. DUX4 is
never expressed in 'healthy' muscle. FSHD has had few clinical
trials,\20\-\26,27,28\ 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.\29\-\42\ The genetics of
FSHD are so remarkable, that NIH Director Dr. Francis Collins said on
the front page of the New York Times, ``If we were thinking of a
collection of the genome's greatest hits, this [FSHD] would go on the
list.'' \43\ Add to this that FSHD was the sole disease mentioned in
the recent tour de force Science publication 'The complete sequence of
a human genome.' The paper is proof that scientists were able to
sequence every base in the genome using at least one of six methods!
FSHD was highlighted as having a bunch of newly assembled paralogs in
the assembly; some of which showed evidence of being transcriptionally
active. Great exposure for FSHD! This article will be read by the
majority of genomics researchers worldwide--so should definitely
increase awareness.\44\
Blocking DUX4's DNA, DUX4's RNA or DUX4's protein ability to
activate its targets has profound therapeutic
relevance.\45\-\48\ The FSHD scientific community has in
recent years pioneered inroads to treating FSHD using the enormous
potential of genomic sequencing, genomic medicine, gene editing and
next generation diagnostics. All with the central paradigm of the
reduction of: DUX4, DUX4 expression, DUX4 protein activity, or the
effects of DUX4-mediated toxicity. Strategies include modulating DUX4
repressive pathways, targeting DUX4 mRNA, DUX4 protein, or cellular
downstream effects of DUX4 expression.
Our FY 2022 testimony on FSHD was quite comprehensive in scope,
complete with 82 references, with a broad call to action in research
areas from bench-side to clinic. Rather than restating--we ask the
Committee to urge NIH to move forward on the many priorities listed.
In FY 2023, we request NIH to additionally make an immediate and
targeted push to answer the following three questions. Answers to these
questions will help remove the obstacles to measuring disease
progression, help measure if novel therapeutics are making a difference
in stopping the disease and elucidate if muscle can grow again and be
restored. At present, measuring disease progression and the
effectiveness and safety of drugs remains ambiguous and the path
forward deep and hard-going for industry, clinical partners and
patients.
Three Key Research Questions
How does DUX4 expression lead to pathophysiology? We know a lot of
what can happen when DUX4 is expressed in a cell (mostly forced
experimental expression), but not a lot about what happens when an FSHD
muscle cell expresses DUX4 that leads to pathology.
Can FSHD muscle pathology be reversed once DUX4 expression starts
the pathogenic cascade in a particular muscle? This is a key question
when looking to improve outcomes with either muscle building or DUX4
halting therapies.
Is there a systemic effect of local DUX4 expression that leads to
amplification of muscle decline, either immune or some extracellular
signaling? Answering this question will help delineate where along the
travels of DUX4 from its birth and death in muscle we can intercept and
control the disease process.
New data/information generated on the basic mechanism of DUX4 and
how it causes muscle disease has the potential to focus the design of
future clinical trials on muscles and measurements that will increase
the rigor of the design and decrease the number of individuals
necessary for initial tests of drug activity. It is absolutely
necessary to increase our resolution, clarity and understanding of what
DUX4 is and what it does to muscle in FSHD. The gains in this area will
effectively unpin or untether FSHD from the difficulty category of
``slowly progressing neuromuscular diseases remaining recalcitrant'' to
timely ascertainment that a clinical intervention can work.
We request for fiscal year 2023, increasing NIH FSHD research
funding/appropriation of the standard portfolio to $25 million. The
growth has been slow, continuous and prone to year-to-year fluctuations
downward and upward according to NIH funding data. Additionally, we
request a one-time boost of $5 million to solicit applications to
answer the three questions of key import. At this moment in time, FSHD
needs an infusion of both longstanding and immediate discovery NIH
grants both submitted and funded. NIH needs to increase funding by
adding exploratory/developmental research grants (parent R21) and
research project grants (parent R01). This is NIH's wheelhouse and
forte without a doubt.
Madam Chairman, thank you for this opportunity to update you on
FSHD with this testimony.
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GG, Brooks SY, Caldas GV, Chen NC, Cheng H, Chin CS, Chow W, de Lima
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AFA, Soto DC, Sovic I, Storer JM, Streets A, Sullivan BA, Thibaud-
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\48\ Guo D, Daman K, Chen JJ, Shi MJ, Yan J, Matijasevic Z, Rickard
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[This statement was submitted by Daniel Paul Perez, Co-Founder &
Director Emeritus, FSHD Society.]
______
Prepared Statement of the GBS|CIDP Foundation International
summary of recommendations for fiscal year 2023
_______________________________________________________________________
--Provide $49 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)
--Provide $11 billion for the Centers for Disease Control and
Prevention (CDC) and $6 million for the Chronic Disease
Education and Awareness Program
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, and distinguished members
of the subcommittee, thank you for your time and your consideration of
the priorities of the community of individuals impacted by Guillain-
Barre Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy
(CIDP), and related conditions as you work to craft the FY 2023 L-HHS
Appropriations Bill.
about gbs, cidp, variants, and related conditions
Guillain-Barre Syndrome
GBS is an inflammatory disorder of the peripheral nerves outside
the brain and spinal cord. 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.
Multifocal Motor Neuropathy
MMN is a rare disorder in which focal areas of multiple motor
nerves are attacked by one's own immune system. Typically, MMN is
slowly progressive, resulting in asymmetrical weakness of a patient's
limbs. Patients frequently develop weakness in their hand(s), resulting
in dropping of objects or sometimes inability to turn a key in a lock.
The weakness associated with MMN can be recognized as fitting a
specific nerve territory. MMN has many features similar to CIDP in that
its onset is progressive over time, causing increased disability that
reflects the greater number of nerve sites involved. However, unlike
CIDP, MMN is asymmetric and affects the right and left side of the body
differently. The clinical course of MMN is chronically progressive
without remission.
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 continued support
of the 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. During the pandemic,
we participated in a conference with NINDS that discussed how
intramural and extramural researchers can 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. This however was not the size and scope of the
original planned meeting. We are continuing to have conversations with
the leadership of both institutes to facilitate follow up and plan for
a more robust agenda and list of goals for a future in person
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 over 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 $49
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 Helen Keller International
Madam Chairwoman, thank you for this opportunity to provide
testimony to the subcommittee on behalf of Helen Keller Intl's U.S.
Vision Programs. Helen Keller Intl respectfully requests this
subcommittee recommend that the United States Department of Education
and Department of Health and Human Services support programs that
provide no-cost vision care for children from low-income families in
fiscal year 2023.
It is Helen Keller Intl's hope that, with the renewed support of
the Department of Education, as well as continued support of our
private donors, we will be able to deliver free vision screenings, eye
exams, and prescriptions eyeglasses to thousands of economically
disadvantaged and vulnerable children who may not otherwise have access
to them. We also request that the Department of Health and Human
Services consider funding school-based programs that identify vision
issues and provide prescription eyeglasses to children from
marginalized and low-income families whose educational performance and
future vocational success may be hindered because of uncorrected vision
problems.
our program
Helen Keller Intl's U.S. Vision Programs exist to make clear vision
accessible to all. Our model was first established in 1994 in the
Washington Heights neighborhood of Manhattan. Since that time, we have
reached more than 2 million individuals with vision screenings, eye
exams, and free prescription eyeglasses. And yet, the need for
accessible eye health services has not diminished. In fact, with low-
income communities continuing to deal with economic fallout of the
COVID-19 pandemic, we believe that this need has only grown.
Despite the fact that routine, comprehensive vision care is a
standard part of preventive health, as many as 12 million adults and 4
million children in the United States suffer from impaired vision due
to uncorrected refractive error, which can easily be corrected with a
pair of prescription eyeglasses. According to a recent study in
Investigative Ophthalmology and Visual Sciences, Americans of color are
significantly more likely to have uncorrected or under-corrected
refractive error (otherwise known as nearsightedness, farsightedness,
and astigmatism) than white Americans. These rates are even higher when
the populations are low-income or uninsured. In this way, a lack of
access to clear vision exacerbates racial and economic inequality in
this country.
In school, students who are not able to see clearly may have
difficulty engaging with their schoolwork and their peers. Studies have
found that children with vision issues are three times more likely to
fail at least one grade. They may also be misdiagnosed with learning
disabilities and are more likely to be socially isolated.
Although refractive error is easily addressed with a pair of
prescription eyeglasses, many individuals across this country cannot
afford or easily access an eye exam or glasses. In an informal survey
our organization conducted with low-income clients nationwide, nearly 2
in 3 reported that they could not access an annual visit to the
optometrist. The barriers to access for this essential care included
cost, insurance, transportation, and long wait times at local clinics.
Our U.S. Vision Programs are prepared to help meet this need by
providing free eye health services directly on-site at low-income
schools and other community-based locations around the United States.
Our three-step model is simple, flexible, and cost-effective: we bring
trained staff and optometrists directly into school buildings or
community partner sites to provide vision screenings and eye exams at
no cost to students or their families. If our team determines that a
child requires eyeglasses, they can try on and select a frame from a
large assortment of stylish, durable options. We return to fit each
student with their glasses and provide literature regarding the
importance of eye health and instructions on proper eyeglass care. In
the instance that a child has symptoms of a more complex eye disorder
(such as strabismus or amblyopia) we will provide a referral to one of
our partnering ophthalmologic clinics for follow-up care.
The services we offer are comprehensive and high quality, and this
model is time-tested. We have refined our approach so that we can
continue to provide this critical care during the COVID-19 pandemic,
utilizing PPE, physical distancing, and the sanitization of surfaces
and equipment to ensure that our clients and our staff stay healthy and
safe.
positive results
The impact of a pair of eyeglasses can be transformative. For many
of the young people we serve, our program provides their first eye exam
and their first pair of eyeglasses. Many students don't even realize
that they are seeing the world differently from their peers until they
first try on their glasses.
Researchers at the University of Minnesota have determined that the
provision of eyeglasses to school-aged children leads to increased
reading scores and improved education outcomes. Our own surveys have
reflected an increase in self-esteem among students who have received
eyeglasses. Teachers we have surveyed also report that students who
receive eyeglasses participate in class at a higher rate. Nearly 100-
percent of the school nurses we have surveyed state that Helen Keller
Intl fills a glaring gap that exists between state-mandated vision
screenings and the actual provision of exams and eyeglasses.
This work has the capacity to change lives by removing the primary
barriers that exist to clear vision: access and expense. Since 1994, we
have provided more than 2 million vision screenings and delivered
nearly 400,000 pairs of free prescription eyeglasses to children in
need. With support from this subcommittee, we hope to see many more.
public/private undertaking
Our U.S. Vision Programs are truly a public/private endeavor. In
each of the five States in which we currently operate we bring together
a wide range of community stakeholders, from parents and teachers to
physicians and business people, all of whom are dedicated to restoring
clear vision. This work is funded through a combination of public and
private dollars--in addition to municipal contracts, we have more than
a dozen corporate and foundation partners. They include the Lavelle
Fund for the Blind, Alcon Laboratories, the Overdeck Family Foundation,
the Wilf Family Foundation, Latter-day Saints Charities, the New York
Community Trust, the Rose Hills Foundation, the Michael J. Connell
Foundation, Healthcare Foundation of New Jersey, and Reader's Digest
Partners for Sight Foundation, among others.
Previously, the endorsement and support of the Department of
Education played an integral role in our program, allowing us to reach
larger numbers of students in more diverse locations, including rural
communities in New Mexico, Texas, and Mississippi. With some of the
restrictions surrounding the COVID-19 pandemic lifting, we endeavor to
once again expand the scope of this work, and hope that we will have to
subcommittee's support in doing so.
conclusion
Helen Keller Intl's U.S. Vision Programs provide an invaluable--and
often life-changing service to underserved youth in a manner that is
both comprehensive and cost-effective. Our program reaches some of the
most vulnerable children in the country, and provides them with free
vision screenings, free eye exams, and free eyeglasses.
We ask this subcommittee to recommend in its fiscal year 2023
Committee report that the United States Department of Education and the
Department of Health and Human Services support programs that provide
vision care for children from low-income families. These funds will
support ongoing programs, such as ours, and will provide the eye health
services that these young people need to succeed in the classroom and
beyond.
As our founder, Helen Keller, once said: Alone we can do so little;
Together we can do so much.
[This statement was submitted by Kathy Spahn, President and Chief
Executive Officer, Helen Keller International.]
______
Prepared Statement of the Hepatitis B Foundation
hbf recommendations for fiscal year 2023 appropriations
_______________________________________________________________________
National Institutes of Health
--Along with the biomedical research community, the Hepatitis B
Foundation (HBF) supports the biomedical research community's
request for at least $49 billion for the National Institutes of
Health (NIH). This funding request is for the NIH's base level
programs, any funding for the new ARPA-H, or for other targeted
programs like pandemic preparedness, should supplement the $49
billion recommendation for NIH's base budget.
--HBF commends NIAID, NIDDK, NCI for the call to update the 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 $11 billion for the Centers for Disease Control and
Prevention programs in FY 2023, and within that $140 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.
--HBF urges the Division of Viral Hepatitis and the Immunization
Services Division (ISD) to take lead on the implementation of
the November 2021 Advisory Committee on Immunization Practices
(ACIP) recommendation that all adults between 19 and 59 be
vaccinated for hepatitis B.
HHS Office of the Secretary
--HBF urges the Office of the Secretary and the Office of the
Assistant Secretary for Health fully support the CDC to ensure
the ACIP recommendation that all adults between 19 and 59 be
vaccinated for hepatitis B is implemented as early as possible
in FY 2023.
--HBF urges the Public Health Service Corps to update their policies
to align with the CDC's guidelines and allow individuals with
chronic Hepatitis B to serve in the Public Health Service
Corps.
_______________________________________________________________________
Ms. Chairwoman and Members of the subcommittee, thank you for the
opportunity to provide testimony as you consider funding priorities for
Fiscal Year (FY) 2023. 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 the most exciting and
promising work in the field.
Ms. Chairwoman, HBF strongly supports the biomedical research
community's request for $49 billion for the NIH base budget. HBF
further urges that NIH increase investments in hepatitis B research in
order to find a cure for the 2.4 million Americans infected with the
hepatitis B virus (HBV) and to eliminate the 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 $11 billion for the Centers for Disease
Control and Prevention in the FY 2023 bill. Within that total, we join
the Hepatitis Appropriations Partnership in urging $140 million for the
CDC's Division of Viral Hepatitis.
Finally, we would urge that the November 2021 ACIP recommendation
that all adults between 19 and 59 be vaccinated for hepatitis B be
fully implemented as early as possible in FY 2023. We urge the Office
of the Secretary and the Office of the Assistant Secretary for Health
to host an inter-agency Summit to discuss dissemination and
implementation of the new recommendation.
recognizing the leadership of the subcommittee
Ms. Chairwoman, 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.
national institutes of health
As previously noted, HBF supports the community's request for $49
billion for the NIH. While we support the President's ARPA-H
initiative, and recognize the importance of pandemic preparedness
funding, it is imperative that the funding for these initiatives be
additional funding, above the $49 billion basic request for NIH. It is
crucial that new investments are not made at the expense of the
important basic science that is critical to our scientific enterprise.
In addition to overall funding for the NIH, HBF urges that NIH
investments in hepatitis B research be increased to fund identified
research opportunities that would help cure and eliminate the disease
once and for all. The Hepatitis B Foundation appreciated the NIH's call
for an update to the Strategic Plan for Trans-NIH Research to Cure
Hepatitis B and we look forward to the final report. Report language is
requested in the FY 2023 Report urging the NIAID and NIDDK to issue
targeted calls for hepatitis B research proposals in FY 2023 focused on
the many new research opportunities identified by the Strategic Plan.
In the U.S., an estimated 2.4 million are chronically infected with
hepatitis B virus (HBV). 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 $70 million in FY 2023.
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, 1.5
million people worldwide are newly infected, and the epidemic continues
to grow. 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 developing
liver cancer 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 178 organizations in the CDC
Coalition and urges a funding level of at least $11 billion for CDC's
programs in FY 2023. This is $375 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. While recent emergency funding has supported
efforts to defeat COVID-19, we must provide stable, sufficient public
health preparedness funding to allow our State and local health
departments to maintain a standing set of core capabilities, so they
are ready when needed, regardless of the next challenge or threat.
The CDC's Division of Viral Hepatitis (DVH) is part of the National
Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (NCHHSTP)
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 $140 million for the DVH in FY 2023.
In November 2021, the CDC's Advisory Committee on Immunization
Practices (ACIP) voted to recommend universal hepatitis B vaccination
for all adults ages 19 to 59 in the U.S. This simplified, updated
recommendation, as it is implemented, will significantly increase the
vaccination rate of adults in the U.S. (currently only 30 percent of
U.S. adults are vaccinated). Now, these recommendations need to be
implemented. We urge the CDC, with support from the Office of the
Secretary and the Office of the Assistant Secretary for Health, to
ensure the ACIP recommendation is implemented as early as possible in
FY 2023. As a first step, we urge the Office of the Secretary and the
Office of the Assistant Secretary for Health to host an inter-agency
Summit to discuss dissemination and implementation of the new
recommendation. The CDC is further urged to promote awareness about the
new vaccination guidelines among medical and health professionals,
communities at high risk, and the public, and to improve collaboration
and coordination across CDC to achieve this goal.
office of the secretary
The Hepatitis B Foundation continues to be concerned that the
Surgeon General's office maintains a hiring policy for Public Health
Service employees that is inconsistent with the recommendation of the
CDC by refusing to hire anyone with chronic hepatitis B. We urge the
Surgeon General's office to change this policy to align with the
``Updated CDC Recommendations for the Management of Hepatitis B Virus-
Infected Health-Care Providers and Students,'' which is based on
science and recognizes that individuals living with chronic hepatitis B
are not a risk to others. Compliance with the CDC policy is also
necessary to meet the nondiscrimination obligations under the Americans
with disabilities Act, Section 504 of the Rehabilitation Act and
section 1557 of the Affordable care Act. The Public Health Service must
update their guidelines.
summary and conclusion
Mrs. Chairwoman, 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. 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 Hispanic Association of
Colleges and Universities
Chairwoman Murray, Ranking Member Blunt, and Members of the
Committee, thank you for the opportunity to submit this testimony on
behalf of the Hispanic Association of Colleges and Universities (HACU).
Founded in 1986, HACU is the only national association that represents
the 559 Hispanic-Serving Institutions (HSIs) in the country, including
the District of Columbia and Puerto Rico. We appreciate the opportunity
to provide our views regarding the Department of Education (DOE) Fiscal
Year 2023 budget. Our requests for this fiscal year are:
--$250,000,000 for Developing Hispanic-Serving Institutions (Title V,
Part A): $67,150,000 above fiscal year 2022; and
--$100,000,000 for Promoting Postbaccalaureate Opportunities for
Hispanic Americans (Title V, Part B): $80,340,0000 above fiscal
year 2022.
HACU commends the committee for increases to Title V Part A and
Part B in recent years, including the $34.12 million increase for Part
A and $5.81 million increase for Part B in fiscal year 2022. These
funds are critical to HSIs as these are their main Federal funding
vehicles. Unfortunately, funding levels have not kept up with the
number of HSIs. Since their codification in 1992 as part of the
amendments to the Higher Education Act of 1965, as amended, HSIs have
continued to grow exponentially from 311 in 2010 to 569 in 2019, for
example. However, the pandemic saw the number of HSIs decrease, for the
first time in 20 years, to 559, partly due to the economic and social
impacts that disproportionately impacted Hispanic students as the entry
requirement for HSI status is to serve 25 percent or more such students
in their total FTE enrollment.
HSIs educate more than 5 million students, including two-thirds of
the estimated 3.8 million Hispanic students in American higher
education, most of whom are first-generation college students and come
from low-income families. HSIs also enroll twice as many African
American students as Historically Black Colleges and Universities
(HBCUs), 41 percent of all Asian Americans, 21 percent of all Native
Americans, and 16 percent non-Hispanic White students in U.S. higher
education. Additionally, while only accounting for 16 percent of higher
education institutions, HSIs enroll 31 percent of Pell recipients.
Despite their great diversity and need, HSIs remain at the bottom of
the Federal funding priorities, compared to other Minority-Serving
Institutions (MSIs) and HBCUs.
HSIs are consistently asked to do more with less. The first
Congressional HSI appropriation in FY1995 was a meager $12 million for
more than 125 HSIs. As the number of HSIs has climbed rapidly, Federal
funding has been paltry over the years and amounted to a mere $315.7
million in FY21, including $221.6 in discretionary funds.
Coupled with persistent Federal underfunding, COVID-19 has
exacerbated the financial needs of HSIs: delayed deferred maintenance,
access to broadband, classroom facilities enhancements, and much needed
wrap-around student services, particularly health and psychological
services. As the pandemic lingers on, the funding needs of HSIs will
become more critical. In a report released by HACU in September
2021,\1\ HACU surveyed HSIs and received 111 responses on their
infrastructure needs that require capital financing. More than nine in
every 10 HSIs need funding for construction of new buildings,
facilities, and classrooms; eight of every 10 for deferred maintenance;
three of every four for IT infrastructure; and more than two-thirds for
repairs.
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\1\ https://www.hacu.net/NewsBot.asp?MODE=VIEW&ID=3424.
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Federal investments are essential to strengthen our workforce by
enhancing educational attainment, especially in STEM and other fields
of national priority. The U.S. Census Bureau reported that from 2010 to
2020 Hispanics accounted for more than half the total growth of the
National population and are now over 63 million, and it estimates that
the Hispanic population will grow by 93.5 percent from 2016 to 2060.\2\
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\2\ https://www.census.gov/content/dam/Census/library/publications/
2015/demo/p25-1143.pdf.
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HSIs educate and train the most diverse and underserved communities
and do so with fewer Federal resources per student than their peer
institutions. As the Nation looks to rebuild the economy after the
pandemic, it is critical that Federal investments strengthen our
workforce by enhancing the educational infrastructure of HSIs to pave
the path of success and opportunity for Hispanic Americans for the
fiscal year 2023.
As the Hispanic growth-rate in K-12 enrollment continues to
accelerate, the number of Hispanic high-school graduates is expected to
increase by 49 percent between 2012-13 and 2028-29, compared to 23
percent for Asian/Pacific Islanders, and to a net drop of 3 percent and
15 percent for Blacks and Whites, respectively. In fact, NCES projected
in the same study an increase of 14 percent in Hispanic college
enrollment between 2017 and 2028 from 3.5 million to over 4.0 million,
but it may be under-projecting as in 2020 there were already 3.8
million Hispanics college students, 67 percent of them at HSIs.\3\
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\3\ https://nces.ed.gov/pubs2020/2020024abbrev.pdf.
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Investing in HSIs is an investment in the success American
workforce. Given the preceding demographic trends and projections, it
is evident that the Nation's labor force is also becoming increasingly
Hispanic. The U.S. Bureau of Labor Statistics (BLS) reports that
Hispanics have the highest participation rate in the American labor
force, which in 2019 was 66.8 percent, compared to 63.0 percent for
Whites and 62.4 percent for Blacks.\4\
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\4\ https://www.bls.gov/emp/tables/civilian-labor-force-
participation-rate.htm.
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A U.S. BLS study projected that the Latino share of the workforce
will increase dramatically from 1 in 10 in 2010 to 1 in 3 by 2050,
while Whites will decrease from 81 percent to 75 percent, Blacks will
remain at 12 percent, Asian Americans will increase from 5 percent to 8
percent and all others from 2 percent to 5 percent during the same span
of time.\5\ Currently, more than half of all the new workers joining
the Nation's labor force is Hispanic. For America to remain competitive
in the global economy, a much better educated and trained Hispanic
labor force is required. As the backbone of Hispanic postsecondary
education, HSIs must be placed at the top of Federal investment
priorities without any further delay.
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\5\ https://www.bls.gov/opub/mlr/2012/10/art1full.pdf.
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HACU and its supporters wholeheartedly commend the U.S. Congress
and the Administration for investing significantly in HBCUs and other
MSIs and urge them to continue doing so. Likewise, we exhort Congress
and the President to invest with equal commitment in HSIs and their
underserved students; they truly are the future of the Nation.
about hacu
The Hispanic Association of Colleges and Universities, founded in
1986, represents more than 500 colleges and universities in the United
States, Latin America, Spain and school districts throughout the U.S.
HACU is the only national association representing existing and
emerging Hispanic-Serving Institutions (HSIs). The Association's
headquarters in San Antonio, Texas, with regional offices in
Washington, D.C and Sacramento, California.
[This statement was submitted by Antonio Flores, PhD, President &
CEO,
Hispanic Association of Colleges and Universities.]
______
Prepared Statement of the HIV Medicine Association
Chairwoman Murray, Ranking Member Blunt and members of the
subcommittee, my name is Marwan Haddad, MD, MPH, chair of the HIV
Medicine Association (HIVMA), and I serve as the medical director of
the Center for Key Populations at the Community Health Center Inc.
(CHCI) in Middletown, Connecticut, one of the largest Federally
Qualified Health Centers in the country. I am pleased to submit
testimony on behalf of HIVMA. HIVMA represents nearly 5,000 physicians,
scientists and other health care professionals around the country on
the frontlines of the HIV epidemic. Our members provide care and
treatment to people with HIV, lead HIV prevention programs and conduct
research in communities across the country.
For the FY 2023 appropriations process, we urge you to appropriate
funding to support the Ending the HIV Epidemic (EHE) initiative,
including: increased funding for the Ryan White HIV/AIDS Program
(RWHAP) at the Health Resources and Services Administration (HRSA)
across all parts, increased funding for the Centers for Disease Control
and Prevention's (CDC's) HIV, hepatitis and sexually transmitted
infections (STI) prevention programs, and increased investments in HIV
research supported by National Institutes of Health (NIH).
The funding requests in our testimony largely reflect the consensus
of the Federal AIDS Policy Partnership (FAPP), a coalition of HIV
organizations from across the country. For a chart of current and
historical funding levels and coalition requests for each program,
please see FAPP's FY 2023 Appropriations for Federal HIV/AIDS Programs.
ending the hiv epidemic initiative--u.s. department of health and human
services
We urge the Senate subcommittee to build on the inroads made by the
EHE initiative, now in its fourth year and strengthened by the Federal
National HIV/AIDS Strategy (2022-2025). We recommend funding the EHE
initiative at least at the President's budget request for $850 million
across CDC, HRSA and NIH for FY 2023, to be used for expanded access to
antiretroviral treatment and pre-exposure prophylaxis (PrEP) to prevent
HIV transmissions as well as improved access to routine and critical
health services.
national prep program--u.s. department of health and human services
The President's budget calls for the creation of a national PrEP
program to expand PrEP use and promote racial and ethnic equity in PrEP
access. This much needed new program would provide access to PrEP at no
cost for uninsured and underinsured individuals, as well as support and
expand PrEP programs across a variety of agencies.
A national PrEP program is needed to dramatically reduce new HIV
cases and address significant PrEP access disparities among populations
the HIV epidemic has heavily impacted. While 1.2 million individuals
could benefit from this prevention drug, only 25 percent have been
prescribed PrEP. The numbers drop even further for Black and Latinx
individuals, to 8 percent and 14 percent. HIVMA supports a program to
scale up access to PrEP medication.
health resources and services administration--hiv/aids bureau
HRSA's Ryan White HIV/AIDS Program is critical to ensuring that
individuals with HIV are linked to care, are retained in care, have
medical adherence and achieve viral suppression. RWHAP has been
critical to our HIV response by supporting care and treatment for
people with HIV without another source of coverage. In 2020, the viral
suppression among RWHAP clients reached a record high of 89.4 percent
as compared to 65.5 percent among all people diagnosed with HIV in the
U.S. Sustaining an undetectable viral load in people with HIV is
important to their health and to stop HIV transmissions. This is one of
the many reasons RWHAP is a critical component of the EHE initiative in
decreasing racial and ethnic, age-based and regional disparities. To
sustain current services and to ensure more people with HIV benefit
from HIV care and treatment, we urge Congress to fund the Ryan White
HIV/AIDS Program at $2.942 billion in FY 2023, an increase of $447.5
million over FY 2022. In addition, we strongly recommend providing at
least $290 million in EHE funding for the Ryan White Program, a $165
million increase over FY 2022.
HIVMA urges an allocation of $231 million, a $25.5 million increase
over FY 2022, for Ryan White Part C programs. It is critical to ensure
that clinics in all jurisdictions nationwide receive additional funding
to increase access to HIV care and treatment to help end the domestic
HIV epidemic. Approximately half of Part C providers serve rural
communities, making the clinics the primary source for delivering HIV
care to rural jurisdictions.
Part C of the Ryan White Program directly funds approximately 350
community health centers and HIV clinics, providing medical care to
more than 300,000 people each year. Ryan White clinics serve a
significant number of individuals living with both substance use
disorder and HIV, delivering a range of medical and support services to
prevent, intervene and treat substance use disorders as well as related
infectious diseases, including HIV, viral hepatitis and STIs.
CHCI's Ryan White-Funded Clinic in Connecticut Is Leading on
Expanding Access to HIV Prevention, Care & Treatment. The Center for
Key Populations (CKP) at Community Health Center Inc. (CHCI) has
received funding through the Ryan White Cares Act for more than 23
years, making us a leading source of HIV primary care in the State of
Connecticut. Each year CHCI has increased the number of HIV patients
served, the number of services offered and the number of HIV tests
conducted based on the needs of the communities we serve.
The needs of both established and newly diagnosed patients with HIV
are growing more complex, especially as the population ages. In 2021,
even as HIV prevention methods became more available, CHCI experienced
an increase in the number of patients living with HIV who accessed
services at our sites. Of all new patients enrolled in care at CHCI in
2021, 71 percent self-reported as racial and ethnic minorities and 56
percent reported food and housing insecurity as major barriers to
achieving optimal health care. Additionally, 4 percent of all Ryan
White patients were uninsured, 87.9 percent had at least one clinical
comorbidity and 62 percent reported unmet mental health needs at the
time of intake. Among Ryan White Program patients at CHCI, 60 percent
reported experiencing stigma or discrimination based on their gender
identity, sexual orientation or HIV status in the last year. As the
country resumed ``normal'' activities after the COVID-19 pandemic,
individuals living with HIV reported significant symptoms of isolation
that were difficult to overcome.
CHCI's Ryan White Program eligible patients who are engaged in care
are screened for substance use disorders routinely; in 2021, 59 percent
screened positive, with 10 percent considering those needs urgent or
severe. CHCI, like most Ryan White Part C programs, also receives
funding from other parts of the Ryan White Program, and these help us
provide support services that were particularly important in retaining
patients in care and assisting in medication compliance. These services
included home medical monitoring equipment, transportation, case
management, patient navigation, home-delivered meals, grocery delivery,
check-in phone calls and other key components of care unique to the
Ryan White Program care model and contribute to optimal health care
outcomes for all patients.
The support services provided by Ryan White funding were pivotal in
maintaining stability and transitioning care efficiently during the
COVID-19 pandemic. The infrastructure developed over 23 years of
funding gave Ryan White patients the additional support they needed to
sustain healthy outcomes and return to care as soon as possible after
the pandemic. These services are integral to the success of patients in
maintaining viral load suppression to protect themselves and their
communities.
health resources and services administration--bureau of primary health
care
We recommend appropriating $172.3 million in new funding for HRSA's
Community Health Center program for the EHE initiative, a $50 million
increase over FY 2022. As part of the EHE initiative, HRSA's community
health center program is focused on expanding HIV prevention services,
including outreach, care coordination and access to PrEP services. In
2020 and 2021, EHE resources were distributed to 213 health centers
that received Health Center/Ryan White Program funding and/or were
located close to a Ryan White Program where no jointly funded health
center currently existed in targeted jurisdiction sites. These health
centers reported more than 151,000 patients receiving PrEP services in
the first year of the EHE initiative--a significant accomplishment in
scaling up PrEP among the most affected populations, critical to
reducing health disparities and ending HIV as an epidemic.
centers for disease control and prevention--national center for hiv/
aids, viral hepatitis, sexually transmitted diseases and tuberculosis
prevention
From CDC's leadership role in responding to the COVID-19 pandemic
to its ongoing efforts to address persistent public health epidemics
and threats, such as HIV, STIs and viral hepatitis, CDC is a critical
national and global expert resource and response center. To
meaningfully address these epidemics and the co-occurring crisis of
substance use disorder--especially injection drug use--we request a
$731.9 million overall increase above FY 2022 levels for a total of
$2.077 billion.
For the Division of HIV/AIDS Prevention (DHAP), we request a total
of $1.233 billion, which is a $246 million increase over FY 2022
levels. DHAP conducts our National HIV surveillance and funds State and
local health departments and communities to conduct evidence-based HIV
prevention activities. CDC's national surveillance system is critical
to monitoring populations and regions impacted by the HIV epidemic and
identifying outbreaks. We also strongly recommend appropriating at
least the $310 million requested by the Administration for the EHE
initiative, a $115 million increase above FY 2022, allowing CDC to
scale up HIV testing to ensure early diagnosis and linkage to care, and
PrEP programs to prevent new infections.
Additionally, we urge the appropriation of $150 million for CDC to
fund surveillance and programming, a $132 million increase above FY
2022, to monitor and prevent injection-related infectious diseases as
well as expand access to syringe services programs, harm reduction and
overdose prevention. Funding for CDC's Infectious Diseases and Opioid
Epidemic programming is critical to the National response to the opioid
crisis, including expanding support for monitoring and data collection
and strengthening national capacity to share information and expand
access to effective prevention services, including syringe services
programs.
For the Division of Viral Hepatitis (DVH), we request a total of
$140 million, which is a $99 million increase over FY 2022 levels. We
have the tools to prevent this growing epidemic, but increased funding
is urgently needed to expand testing and screening, prevention and
surveillance to put the U.S. on the path to eliminating hepatitis as a
public health threat.
For the Division of STD Prevention (DSTDP), we request a total of
$329.2 million, which is a $164.9 million increase over FY 2022 levels.
CDC's 2020 STD Surveillance Report shows syphilis among newborns (i.e.,
congenital syphilis) increased, with reported cases up nearly 15
percent from 2019 and 235 percent from 2016. Increases like these 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
The historical response to the COVID-19 pandemic over the last 2
years exemplifies the value of the Nation's longstanding commitment to
NIH. Decades of medical research supported by NIH are the foundation
for diagnostic, treatment and preventive interventions available today,
and building on this research will be vital in finding a cure and
vaccine for HIV. To advance these and other scientific discoveries, we
ask that at least $3.875 billion be allocated for HIV research in FY
2023, an increase of $681 million over FY 2022.
conclusion
Thank you for considering this request to support lifesaving
investments in domestic HIV and infectious diseases programs in the FY
2023 (LHHS) appropriations bill. Fully funding these programs will
ensure progress in ending the domestic HIV epidemic and help maintain
the gains achieved in recent years. HIVMA looks forward to working with
Congress to ensure that the resources necessary to make significant
progress in preventing HIV and improving the health and well-being of
people with HIV are provided. Please contact me or HIVMA's senior
policy and advocacy manager, Jose A. Rodriguez, 4040 Wilson Boulevard,
Suite 300, Arlington, VA, 22203, at [email protected] if you have
any questions or need additional information.
[This statement was submitted by Marwan Haddad, MD, MPH, Chair, HIV
Medicine Association.]
______
Prepared Statement of the HIV+Hepatitis 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 FY 2023 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.
Our nation is on a path to eliminating two infectious diseases, HIV
and viral hepatitis, in the U.S., but we need increased funding to
accelerate our efforts particularly in communities and populations
disproportionately impacted. The ongoing COVID-19 pandemic has
demonstrated the interconnectedness of communities and health
conditions and has allowed innovative service delivery. Increased
investment in surveillance, education, prevention, and care and
treatment will ensure we continue to address HIV and viral hepatitis,
including taking a syndemic approach in order to achieve maximum
impact.
The programs and funding increases detailed below are pivotal to
our Nation's ability to end both HIV and hepatitis.
ending the hiv epidemic in the u.s.
Over the past 3 years, Congress has appropriated funding for the
Ending the HIV Epidemic in the U.S. initiative, which sets the goal of
reducing new HIV infections by 75 percent by 2025, and 90 percent by
2030. Unfortunately, this funding has been far less than what estimates
used in the creation of the EHE initiative deemed necessary and were
proposed by both Presidents Trump and Biden. The initiative, which is
currently focused on those jurisdictions that represent about 50
percent of diagnoses, has already shown success with the money
appropriated to date. The Health Resources and Services
Administration's HIV/AIDS Bureau reports that in 2020, the Ryan White
Program served 11,139 new clients and re-engaged an additional 8,282
clients for a total of 19,421 clients during the first year of the
COVID-19 pandemic when services often were disrupted. Additionally,
community health centers funded by the EHE Initiative were able to
increase PrEP (HIV prevention medication) to 389,000 people.
In FY 2023, we urge Congress to fund EHE activities at the level
requested in President Biden's FY23 Budget Request. For FY 2023, we ask
that you fully fund the fourth year of the initiative to continue to
scale up the EHE initiative by supporting the president's budget
request of $850 million, an increase of $377 million from FY 2021.
--$310 million for the CDC Division of HIV/AIDS Prevention for
testing, linkage to care, and prevention services, including
pre-exposure prophylaxis (PrEP) (+$115 million);
--$290 million for the HRSA Ryan White HIV/AIDS Program to expand
comprehensive care and treatment for people living with HIV
(+$165 million);
--$172 million for the HRSA Community Health Centers to increase
clinical access to prevention services, particularly PrEP (+$50
million);
--$52 million for the Indian Health Service (IHS) to address the
combat the disparate impact of HIV and hepatitis C on American
Indian/Alaska Native populations (+$47 million); and
--$26 million for NIH Centers for AIDS Research to expand research on
implementation science and best practices in HIV prevention and
treatment.
prep
It is estimated that only 23.4 percent of people who could benefit
from PrEP have received a prescription. PrEP coverage is highest among
white people, at 63.3 percent, yet only 8.2 percent of black people and
14 percent of Hispanic/Latino people who could benefit from PrEP in the
U.S. have a prescription. Additionally, PrEP coverage among women is
only at 9.7 percent. Reducing these disparities must be a priority as
we work to expand PrEP use.
We are thankful that there has been an increased focus on PrEP both
in Congress and from President Biden. In his FY 2023 budget request,
President Biden called for a new mandatory funding program to expand
PrEP across the United States through providing medication to uninsured
and underinsured individuals, as well as supporting and expanding PrEP
programs across a variety of agencies. As the HIV community, relevant
stakeholders, and Congress consider this proposal along with others, we
urge you to support funding for new and innovative grant programs to
expand PrEP access, ensure that those who want PrEP can easily access
the medication without any costs or barriers, and increase demand for
PrEP among people who could benefit from this important medication.
This can be accomplished with increased funding for PrEP services for
community health centers, CDC's Division of HIV Prevention, and other
programs.
hiv
Additionally, the success of the EHE initiative and PrEP delivery
rests upon our underlying public health prevention, care, and treatment
programs at the CDC, HRSA, and other agencies. Congress must ensure
that these are also funded to provide services in all areas of the
country.
The Ryan White HIV/AIDS Program at the Health Resources and
Services Administration provides medical care, medications, and
essential coverage completion services to over 567,000 low-income,
uninsured and/or underinsured individuals with HIV. Nearly 61 percent
of clients live at or below 100 percent of the Federal poverty level
and nearly three-quarters of the clients are from racial and ethnic
minority populations. For over 30 years, the Ryan White program has
pioneered innovative models of care which has resulted in over 89
percent of Ryan White clients achieving viral suppression, a critical
marker for decreasing new infections in the U.S. Currently, Ryan White
Programs, and particularly the AIDS Drug Assistance Programs (ADAPs)
are facing increased demand as people have lost health coverage and
incomes due to the ongoing economic impact of COVID-19. Without
increased funding some ADAPs may be forced to institute wait lists for
medications or other cost containment measures.
This program is especially important in many States where there are
large healthcare coverage gaps because of States choosing not to expand
Medicaid. There are approximately 400,000 people living with HIV who
are not engaged in care and treatment. The Ryan White Program can play
a large role in bringing these people into care and treatment and
ensuring their virus is undetectable, which makes them untransmittable.
The Ryan White Program also needs additional support to address the
complex challenges of the overdose crisis, mental health crisis, and
prevention and treatment of other infectious diseases, including COVID-
19, viral hepatitis, and STIs. We urge Congress to fund the Ryan White
HIV/AIDS Program at a total of $2.942 billion in FY 2023, an increase
of $447 million over FY 2022, of which $165 million is for the EHE
initiative and $68 million is for ADAPs.
There has been incredible progress in the fight against HIV over
the last 40 years, but that progress has stalled with new infections
plateauing since 2013. Increasing funding for high-impact, community-
focused HIV prevention services through the CDC's Division of HIV
Prevention has proven to result in a strong return on investment. HIV
continues to disproportionately impact Black gay and bisexual men,
Latinx gay and bisexual men, Black heterosexual women, transgender and
gender nonconforming women, people who inject drugs, and people who
live in the South. HIV prevention tools that meet the special
prevention needs of these populations must be expanded.
Through partnerships with State and local public health departments
and community-based organizations, the CDC has expanded targeted, high-
impact prevention programs that work to address racial and geographic
health disparities. Additionally, the CDC's national surveillance
system is a key tool in identifying people and regions most impacted by
the epidemic and tailoring prevention efforts to meet the needs of
those populations and prevent HIV transmission. There is no single way
to prevent HIV, but jurisdictions use a combination of effective
evidence-based approaches including testing, linkage to care, condoms,
syringe service programs, and PrEP. We urge you to fund the CDC
Division of HIV Prevention at $822.7 million in FY 2023, an increase of
$67 million over FY 2022, in addition to the $310 million for EHE
Initiative work at CDC.
A holistic response to the HIV epidemic also depends on fully
funding other priority programs at HHS, including the CDC's Division of
School and Adolescent Health and STI prevention, the Minority HIV/AIDS
Initiative, AIDS Research at the NIH, the Title X Family Planning
Program, and the Teen Pregnancy Prevention Program (TPPP).
viral hepatitis
Additionally, we respectfully request that you provide increased
funding for viral hepatitis programs at the CDC. The CDC estimates that
nearly 5 million people in the United States live with hepatitis B
(HBV) or hepatitis C (HCV), and as many as 65 percent are unaware they
are living with the disease. The opioid epidemic has significantly
increased the number of viral hepatitis cases in the United States,
with available data suggesting that more than 70 percent of the 57,800
new HCV infections are among people who inject drugs. 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 $41 million-far short of what is needed to build and
strengthen our public health response to hepatitis. The Viral Hepatitis
National Strategic Plan for the United States: A Roadmap to Elimination
(2021-2025) lays out an ambitious plan to end the hepatitis epidemic;
however, health departments and community partners are in desperate
need of additional resources. Increased investment 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. With the treatment of
hepatitis D expected to be approved this year, there will be increased
needs for testing and linkage to care programs. While we are pleased
that the Biden administration has prioritized viral hepatitis in its
FY23 budget with an increase of $13.5 million, we urge you to provide
the CDC Division of Viral Hepatitis with $140 million, an increase of
$99 million over FY 2022 enacted levels.
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. The U.S. is experiencing an ongoing public health emergency
crisis with the U.S. surpassing 105,000 annual overdose deaths from
opioid overdose in 2020, a more than 45 percent increase from January
2020. Providing full support for this program is another key step in
preventing new cases of viral hepatitis and HIV, addressing overdose
prevention, and putting the country on the path towards elimination. We
urge the committee to fund this program to eliminate opioid-related
infectious diseases at $150 million, an increase of $133 million.
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.
federal hiv & hepatitis coordination
Two important offices which coordinate the implementation of the
NHAS and EHE activities need resources to bolster their ability to
coordinate HIV and viral hepatitis activities across the Federal
Government. The White House Office of National AIDS Policy and the HHS
Office of Infectious Disease and HIV/AIDS Policy both play an important
role in developing and implementing government-wide HIV strategies, as
well as coordinating efforts among the wide range of Federal agencies
working to end the HIV epidemic and the syndemics of STDs, hepatitis,
TB, and overdoses. We urge you to provide a total of $20 million for
the HHS Office of Infectious Disease and HIV/AIDS Policy and $3 million
for the White House Office of National AIDS Policy in FY 2023.
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 hepatitis epidemics. Fortunately, we
have the tools available to end both these epidemics; however, we must
provide the necessary resources to accelerate our efforts to achieve
these goals.
[This statement was submitted by Carl Schmid, Executive Director,
HIV+Hepatitis Policy Institute.]
______
Prepared Statement of Hope Charities
summary of fiscal year 2023 recommendations
_______________________________________________________________________
--Provide NIH with at least a $3.5 billion increase in discretionary
funding for FY 2023 to bring overall agency funding up to a
minimum of $49 billion annually.
--Please provide proportional funding increases for NIH's various
Institutes and Centers, such as the National Institute of
Allergy and Infectious Diseases (NIAID) and the National
Heart, Lung, and Blood Institute (NHLBI).
--Please provide separate, additional funding to further support
and advance implementation of the Advanced Research
Projects Agency for Health (ARPA-H) to ensure this
important initiative does not compete with (and ultimately
compliments) ongoing NIH research efforts.
--Provide the Centers for Disease Control and Prevention (CDC) with
at least a $2.55 billion increase in discretionary funding for
FY23 to bring overall agency funding up to a minimum of $11
billion annually.
--Please provide established CDC Centers and Programs, such as the
National Center for Chronic Disease Prevention and Health
Promotion, with proportional funding increases.
--Please provide the emerging CDC Chronic Disease Education and
Awareness (CDEA) program with $6 million for FY 2023, an
increase of $3 million over FY 2022.
--Provide the Health Resources and Services Administration (HRSA)
with a funding level of at least $9.8 billion for FY 2023, an
increase of roughly $900 million over FY 2022.
--Continue to support committee recommendations highlighting the
value and importance of charitable assistance programs and
encouraging proper access.
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, and distinguished members
of the subcommittee, thank you for the opportunity to present the views
of Hope Charities and the patient communities that we serve. Primarily,
we thank you for your continued support for medical research and public
health programs that serve blood disorders and rare disease patients
through the FY 2022 omnibus package. For FY 2023, Hope joins the
broader medical research and public health community in asking that the
investment in NIH, CDC, and HRSA be maintained and responsibly
increased.
About Hope Charities
Hope Charities is a national nonprofit organization, founded in
2009, based in Louisiana. The mission of Hope Charities is to act as a
conduit of hope, strength, and resources to families in a crisis caused
by a chronic illness. We accomplish our mission through several
programs including our Resource Connection Program; direct patient
assistance, which helps families by subsidizing the cost of utilities,
food, housing, transportation, and medical equipment; access to care
through health insurance premium assistance as well as educational
programs.
Complimenting Public Health Programs
The Louisiana Department of Health classifies 63 percent (40 of 64)
parishes as ``rural.'' The CDC reports that residents in rural areas
have higher rates of poverty, less access to healthcare, and are less
likely to have health insurance. Hope Charities works with Americans by
increasing access to medical care for rural, underserved, and
vulnerable populations. Our mission is to improve healthcare outcomes,
which in turn decreases work absences, reduces the negative impact of
chronic illness on mental health, and can lower the overall cost of
healthcare.
NIH conducts important research into many rare and chronic
conditions, such as hemophilia, that incrementally improves care and
options for affected individuals. This work is essential to advancing
innovative research, improving outcomes, and lowering healthcare costs.
The CDC and HRSA also support hemophilia treatment centers and have a
variety of line-item programs that assist with public health and care
delivery for patients affected by a variety of conditions. These
programs, particularly at CDC's National Center for Chronic Disease
Prevention and Health Promotion, have only seen modest increases in
recent years, but much more can be done with an infusion of timely
resources.
Please note, as a safety net program, Hope Charities is pursuing a
congressionally directed spending request to bolster efforts that
support the work of hemophilia treatment centers and community health
centers, in addition to requesting discretionary funding increases for
Federal programs.
About the Patients that We Serve
Hope recently received a request from Van, a 31 year old male who
lives in Louisiana and has hemophilia. He was scheduled to have surgery
at 5:30 a.m. on his right knee as a result of hemophilia-related
injuries. He lives two hours away from his Hemophilia Treatment Center
and the hospital where the surgery was to occur. He is on Medicaid and
could not afford to travel to the hospital. Hope helped him with travel
expenses and paid for a hotel room for him to stay the night before his
surgery.
Anna resides in Illinois and lives 8 hours from her nearest
Hemophilia Treatment Center. Her minor son has hemophilia B. She
requested funding from Hope for travel to an appointment. We paid for a
hotel room for Anna and her son the night before their appointment.
They attended their appointment early the next day, then traveled home.
[This statement was submitted by Jonathan James, CEO, Hope
Charities.]
______
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 no less than $500 million for the Agency for Healthcare
Research and Quality (AHRQ) and a minimum of $375.3 million for the
National Institute for Occupational Safety and Health (NIOSH),
including $34 million for the Education and Research Centers (ERCs).
HFES supports additional funding for the Advanced Research Projects
Agency for Health (ARPA-H) through a supplement for the National
Institute of Health (NIH) beyond the $49 billion recommended in fiscal
year (FY) 2023.
AHRQ supports research to improve health care quality, reduce
costs, advance patient safety, decrease medical errors, and broaden
access to essential services. As the lead Federal agency for funding
health services research (HSR) and primary care research (PCR), AHRQ is
the bridge between cures and care, and ensures that Americans get the
best health care at the best value. The RAND Corporation released a
report in 2021 as called for by the Consolidated Appropriations Act of
2018, which identified AHRQ as ``the only agency that has statutory
authorizations to generate HSR and be the home for Federal PCR, and the
unique focus of its research portfolio on systems-based outcomes (e.g.,
making health care safer, higher quality, more accessible, equitable,
and affordable) and approaches to implementing improvement across
health care settings and populations in the United States.''
HFES requests a minimum of $500 million for AHRQ, which is
consistent with the FY 2010 level adjusted for inflation and reflects
the demonstrated needs of pandemic response. This funding level will
allow AHRQ to rebuild portfolios terminated after years of cuts. AHRQ
is the Federal vehicle for studying and improving the United States
healthcare system, and it needs the resources to meet its mission and
this moment. Through this appropriation level, AHRQ will be better able
to fund the ``last mile'' of research from cure to care.
Additionally, HFES requests $375.3 million for NIOSH, including $34
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, ERCs
are responsible for supplying many of the country's OSH graduates who
will go on to fill professional roles.
HFES supports the creation of Advanced Research Projects Agency for
Health (ARPA-H) and advocates for additional funding to launch the
agency in FY 2023. HFES advocates for $49 billion for NIH and
additional supplemental funding to expand the ARPA-H effort ARPA-H will
focus on high-risk, high-reward research that targets biomedical and
health breakthroughs, while considering outcomes and the impact on
healthcare and quality of life. These advancements will range from how
to prevent, treat, and cure diseases that affect many Americans.
HFES strongly believes 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
3,000 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 health care sector to the ways we travel and to the hand-held
devices we use every day.
conclusion
HFES urges the subcommittee to provide $500 million for AHRQ;
$375.3 million for NIOSH, including $34 million for the Education and
Research Centers (ERCs); and funding a supplement for ARPA-H through
beyond a recommended $49 billion for NIH in FY 2023. 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 Christopher R. Reid, President,
and Steven C. Kemp, CAE, Executive Director, Human Factors and
Ergonomics Society.]
______
Prepared Statement of the Infectious Diseases and the Opioid Epidemic
Program
Chair Murray, Ranking Member Blunt, and members of the
subcommittee, my name is Brad Finegood and I work for King County (WA)
as a Strategic Adviser addressing for Public Health-Seattle & King
County in Seattle, WA. In this role it is my responsibility to lead the
overdose prevention work for the community.
I am pleased to submit testimony on behalf of King County, WA to
urge Congress to appropriate $150 million for the Infectious Diseases
and the Opioid Epidemic program at the Centers for Disease Control and
Prevention (CDC) at the Department of Health and Human Services (HHS)
to save lives and address the overdose crisis by supporting and
expanding access to syringe services programs (SSPs).
The United States is experiencing an urgent and unprecedented drug
overdose crisis, with more than 100,000 overdose deaths from 2021-2022.
Like the rest of the Nation, King County, WA continues to experience
record overdose deaths each year. There have been significant increases
in the county over the past decade, from 248 deaths in 2010 to 511
deaths in 2020, to the biggest yearly increase yet in 2021 resulting in
an estimated 719 deaths (some cases pending confirmation). The recent
influx of fentanyl in the local drug supply has contributed
significantly. Fentanyl is increasingly involved in overdose deaths,
from 3 deaths in 2015 to 360 in 2021--a nearly 12,000 percent increase
in just 6 years. Already marginalized demographic groups are
disproportionately impacted. In King County, death rates (numbers per
100,000) in 2020 were 77.2 for American Indians/Alaskan Natives, 32.7
for Blacks, and 16.5 for Hispanics, compared to 16 for Whites.
It is imperative that congress respond to this overdose crisis with
the urgency it deserves and requires. We know that a public health
approach is the most humane and effective approach to tackling this
crisis. SSPs are an essential, evidence based public health
intervention and a vital component of overdose prevention. The CDC has
documented over 30 years of evidence that shows that SSPs reduce
overdose deaths and infectious diseases transmission rates as well as
increase the number of individuals entering substance use disorder
treatment. These studies also confirm that SSPs do not increase illicit
drug use or crime, but they do reduce the amount of improperly
discarded syringes and save money.
The King County Needle Exchange proudly serves clients by providing
health education, naloxone training and distribution, safer sex
supplies, and referrals for addiction treatment and other medical
services, in addition to exchanging injection supplies. Our staff
attempts to meet people where they are and help them address their
needs in the safest and healthiest way possible, free of judgement and
stigma. SSPs are among the only health care services trusted and used
by people who use drugs, so SSP programs can effectively engage this
highly stigmatized population.
Unfortunately, the Nation has insufficient access to SSPs and the
COVID-19 pandemic has decreased access to these life-saving services
during a time when the need for services has increased dramatically. In
January 2021, Drug Policy Alliance conducted a survey of SSPs that
showed that 91 percent of respondents experienced an increase in
clients in 2020. During this time of skyrocketing need, 42 percent of
respondents experienced funding cuts and were forced to lay off staff
and reduce services, limiting access to life saving interventions.
Increased Federal funding in needed to expand access to these critical
and effective programs. Tacoma, WA's NASEN's statistics show that there
are only approximately 400 SSPs operating nationwide. Experts estimate
that to sufficiently expand access to SSP programs, the U.S. would
require at least 2,000 programs--5 times the number in existence now.
Finally, expanding access to SSPs will reduce health care costs,
including for infectious diseases treatment. Hepatitis C treatment can
cost more than $30,000 per person, while HIV treatment can cost upwards
of $560,000 per person. Averting even a small number of cases would
save millions of dollars in treatment costs in a single year.
With additional FY23 funding, CDC could expand SSPs at this
critical time to help prevent overdose deaths, the spread of HIV and
viral hepatitis and connect people to life-saving medical care.
On a personal note--in addition to leading the overdose prevention
work for King County, I am the brother of overdose victim. Every single
person who counts as a fatal overdose is a family member to someone and
an individual that could have been saved. We have the tools; we just
need the funding to help implement.
I want to thank the subcommittee for its past funding of the CDC
Infectious Diseases and Opioid Epidemic program and urge Congress to
provide $150 million for the program in FY23. Thank you also for your
time and consideration of my testimony, and please do not hesitate to
contact me at [email protected] if you have questions or
need additional information.
Sincerely.
[This statement was submitted by Brad Finegood, MA, LMHC, Office of
the
Director, Strategic Advisor, Public Health--Seattle & King County.]
______
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 clinicians specializing in infectious diseases
prevention, care, research and education, I urge the subcommittee to
provide robust FY2023 funding for public health and biomedical research
activities that save lives, contain health care costs and promote
economic growth. IDSA asks the subcommittee to provide $397 million for
the Antibiotic Resistance Solutions Initiative (ARSI) at the Centers
for Disease Control and Prevention (CDC), $6.7 billion for the National
Institute of Allergy and Infectious Diseases (NIAID), $300 million for
the Biomedical Advanced Research and Development Authority (BARDA)
Broad Spectrum Antimicrobials and CARB-X programs, and $200 million for
the Strategic National Stockpile Special Reserve Fund program.
While we must continue to direct substantial resources to tackle
the COVID-19 pandemic, we must also address other domestic and global
infectious diseases threats and epidemics, including those for which
progress has stalled and/or worsened during the pandemic. For example,
high levels of antibiotic use have exacerbated existing antimicrobial
resistance (AMR), deepening the need for antimicrobial stewardship,
surveillance and new antimicrobial drugs. From March-September 2020,
there was a 24 percent increase in hospital-onset, multidrug-resistant
infections associated with COVID-19 surges. The COVID-19 pandemic has
shown us all too clearly the fundamental importance of expanding the
infectious diseases workforce, public health infrastructure and
biomedical research enterprise necessary to successfully confront the
panoply of infectious threats facing our increasingly interconnected
world.
centers for disease control and prevention
Antibiotic Resistance Solutions Initiative (ARSI)
We urge $397 million in funding for the Antibiotic Resistance
Solutions Initiative in FY2023, the cornerstone of the Nation's efforts
to detect, prevent, and respond to AMR. The President's budget proposal
includes $197 million in discretionary funding and $200 million each
year in mandatory funding from FY2023-2028 (as part of the larger
pandemic preparedness request), for a total of $397 million in FY2023.
IDSA members see the impact that AMR has on patients daily.
Antimicrobial 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. Infections are a primary or associated cause of death in
50 percent of patients with cancer, as AMR can make these infections
difficult or impossible to treat. Tragically some patients may be cured
of their cancer but succumb to a resistant infection which can occur as
a result of the effects of chemotherapy. AMR has a disproportionate
impact on certain communities due to variance in risk of exposure,
susceptibility to infection or treatment received. Rates of several
serious antibiotic-resistant infections, including community-associated
methicillin-resistant Staphylococcus aureus (MRSA) infections, are
higher incidence in Black populations. Globally, resistant infections
directly caused 1.27 million deaths in 2019 and played a role in 4.95
million deaths. If we do not act now, antibiotic-resistant infections
will be the leading cause of death by 2050 and could cost the world
$100 trillion.
Recommended funding is needed to expand antibiotic stewardship
across the continuum of care; double State and local grant awards;
expand the AR Laboratory Network globally and domestically to
strengthen the identification; tracking and containment of deadly
pathogens; support AMR research and epicenters; and increase public and
health care professional education and awareness. The program is also a
critical building block of CDC's public health infrastructure that
directly supports broader agency activities, including COVID-19 first
responders, foodborne illness pathogen detection, global AMR prevention
and surveillance, and responses to sexually transmitted infections and
health care-associated infections. Since FY2016, funding for the
initiative has improved antibiotic use, increased state and regional
laboratory capacity to rapidly detect resistant infections and enhanced
tracking of health care-associated infections. However, many state
laboratories still do not monitor and report resistance data on
pathogens of importance, and the program will be unable to effectively
address current and newly emerging threats and prepare for future
challenges without a significant increase in funding in FY2023.
Advanced Molecular Detection (AMD)
FY2023 funding of $175 million for the Advanced Molecular Detection
program would ensure continued innovation in the detection and tracking
of existing and emerging resistant pathogens. Funding would also enable
federal, State, and local public health laboratories to expand the use
of pathogen genomics, sustain important partnerships with academic
research institutions, and bolster training to ensure integration of
genomics into AMR surveillance and response. The pandemic has resulted
in a substantial ramping up of CDC capacity for sequencing pathogens.
CDC is in the process of establishing ``Centers of Excellence,''
linking together public health agencies and private sector partnerships
focused on pathogen genomics and molecular epidemiology. The $175
million would sustain the Centers of Excellence and support ongoing AMD
activities.
National Healthcare Safety Network (NHSN)
FY2023 funding of $100 million for the National Healthcare Safety
Network (NHSN) will enable the program to meet its current and
projected demands. Requested funding is needed to modernize and
automate NHSN to alleviate the reporting burden and speed access to
actionable data, which help measure and drive progress toward
optimizing antibiotic use. Additionally, increased funding would
provide access to technical support for more than 65,000 staff at
health care facilities who use NHSN. In its FY2023 Inpatient
Prospective Payment System (IPPS) rule, the Centers for Medicare and
Medicaid Services (CMS) included a requirement that hospitals begin
reporting antibiotic use and resistance data. IDSA has long advocated
for this policy, which will strengthen our ability to detect and track
emerging resistance threats and provide data to help evaluate
stewardship interventions and inform best practices. Increased funding
for NHSN will be essential to help hospitals that do not already report
these data prepare to do so and to ensure the overall success of this
initiative.
CDC Center for Global Health
IDSA urges the subcommittee to provide $991 million in FY2023
funding, including $456.4 million for CDC's Division of Global Health
Protection. Public health experts address more than 400 diseases and
health threats in 60 countries, including SARS-CoV-2. An emerging
infection in any part of the world is just a plane ride away from the
U.S. (or any other location). As highlighted by the COVID-19 pandemic,
increased resources for this vital CDC program are needed to improve
global capacity to prevent, detect and respond to health threats at
their source before international spread. As a key implementor of the
Global Health Security Agenda, the division works to improve health
emergency preparedness and response, enhance infectious disease
surveillance systems, strengthen laboratory capacity, train health care
workers and disease detectives, and build and support emergency
operations centers in countries with limited public health capacities.
The program also works to address AMR by providing technical assistance
to 30 countries, working to detect resistant threats; prevent and
contain resistance pathogens; and improve antibiotic use. Other
divisions in the CDC Center for Global Health are instrumental in
providing technical assistance on HIV, tuberculosis (TB), malaria and
other parasitic diseases, and also ensuring access to essential
immunization services for children in low- and middle-income countries.
U.S. leadership of global health security efforts is essential, and the
resources allocated to those efforts have been inadequate. Until all
countries have laboratory monitoring, surveillance capacities, and the
trained staff and equipment necessary to detect and respond swiftly to
emerging infectious threats, we all will remain vulnerable.
Elimination of Opioid-Related Infectious Diseases
$120 billion in funding for the Opioid-Related Infectious Diseases
program would allow CDC to address the significant and growing burden
of the opioid epidemic by expanding surveillance for infectious
diseases commonly associated with injection drug use, including HIV,
viral hepatitis and infective endocarditis. CDC has found steep
increases in multiple viral, bacterial and fungal infections due to
injection drug use, and CDC estimates that individuals who inject drugs
are 16 times more likely to develop an invasive MRSA infection. We are
very concerned about how the opioid crisis is driving higher rates of
infectious diseases including hepatitis C, endocarditis, HIV and
pneumonia, as well as skin, soft tissue, bone and joint infections.
Support systems for individuals with substance use disorders are
suffering disruptions due to the COVID-19 pandemic, which may be
worsening the opioid epidemic and associated infectious diseases.
assistant secretary for preparedness and response (aspr)
Biomedical Advanced Research and Development Authority (BARDA), Broad
Spectrum Antimicrobials and Combating Antibiotic-Resistant
Bacteria Biopharmaceutical Accelerator (CARB-X )
The BARDA broad spectrum antimicrobials program and CARB-X leverage
public/private partnerships to develop products that directly support
the government-wide National Action Plan for Combating Antibiotic-
Resistant Bacteria and 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
$300 million in funding is needed to help achieve the goals of the
2020-2025 Action Plan to accelerate basic and applied research for
developing new antibiotics and other products. Additional funding will
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.
Project BioShield Special Reserve Fund (SRF), Broad Spectrum
Antimicrobials
The Project BioShield SRF is positioned to support the response to
public health threats, including AMR. Efforts by BARDA and NIAID have
been successful in helping companies bring new antibiotics to market,
but those companies 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. 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)
$6.7 billion for NIAID, including $585 million for AMR research,
would allow NIAID to address AMR while carrying out its broader role in
supporting infectious diseases research, including emerging infectious
diseases, HIV, TB and influenza. Increased FY2023 funding would
strengthen investment in the biomedical research workforce, including
training and efforts to support early-career physician-scientists and
promote diversity, update the National clinical trials infrastructure
to include community hospitals and enable access for underserved
populations.
With regard to AMR specifically, increased funding would support
research on antimicrobial mechanisms of resistance, therapeutics,
vaccines and diagnostics; development of a clinical trials network to
reduce barriers to research on emerging and difficult-to-treat
resistant infections; and support for training more physician
scientists and clinical investigators to improve AMR research capacity,
as outlined in the 2020-2025 National Action Plan to Combat Antibiotic-
Resistant Bacteria.
The COVID-19 pandemic has demonstrated the need to better prepare
our biomedical research infrastructure to respond to emerging
infectious diseases and future emergencies, including the need to
strengthen and diversify the ID research workforce. High educational
debt, low research salaries, and competing work-life demands have
driven many promising researchers from the field. In 2021, only 70
percent of ID physician training programs filled their slots, leaving
us with an inadequate pipeline of ID physician-scientists necessary to
lead clinical trials and additional research to strengthen our
prevention and responses to ID threats. Strong NIAID support for career
development through increased FY2023 funding and other initiatives is
critical to improving and diversifying the pipeline of physician-
scientists committed to a career in ID. NIAID should use increased
resources to provide additional K, T, and F awards, and Early
Investigator Awards, as well as new opportunities for community-based
ID physicians to participate in clinical trials and other research to
enhance recruitment, training and diversity of the physician-scientist
workforce.
conclusion
Thank you for the opportunity to submit this statement. The
nation's infectious diseases 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 Daniel P. McQuillen, MD, FIDSA,
President, Infectious Diseases Society of America.]
______
Prepared Statement of the Integrative Health Policy Consortium
Thank you, Chair Murray and Ranking Member Blunt, for this
opportunity to testify in support of programs at the Department of
Health and Human Services under your subcommittee's jurisdiction that
are important to the members of the Integrative Health Policy
Consortium (IHPC) (www.ihpc.org). Specifically, IHPC is writing to
express its support for funding the National Center for Complementary
and Integrative Health (NCCIH), a component of the National Institutes
of Health (NIH), and the Federally Qualified Health Centers (FQHCs)
program within the Health Resources and Services Administration (HRSA)
in FY 2023.
The Integrative Health Policy Consortium (IHPC) is a broad-based
coalition of organizations whose mission is to eliminate barriers to
health. IHPC includes 26 organizations representing more than 650,000
state licensed, certified and/or nationally certified healthcare
professionals, including medical doctors, registered nurses, doctors of
chiropractic, naturopathic doctors, licensed acupuncturists, licensed
massage therapists, and academic, research, clinical, and public
education organizations. IHPC has championed the Congressional
Integrative Health & Wellness Caucus and functions to support the
Federal agencies overseeing America's health and health research needs.
IHPC envisions a world with no barriers to health and is focused on
promoting a healthier world that incentivizes health creation for all
individuals, communities, and the planet.
national center for complementary and integrative health
IHPC appreciates the strong support that the Chair and Ranking
Member have given the NIH. IHPC shares your enthusiasm for the agency's
research and research training mission and encourages the subcommittee
to continue prioritizing NIH funding. In addition, we urge the
subcommittee to provide the National Center for Complementary and
Integrative Health (NCCIH) with similar, commensurate increases. With
additional support, NCCIH could support its ongoing mission as well as
embark fully on a new, promising research initiative, the Whole Health
Perspective. This initiative would promote research looking at the
interactions between systems in the body, such as connections between
the brain and the heart, that predispose people to disease and expand
our understanding of integrative health and pathways to improving
health and preventing disease.
IHPC specially wants to draw attention to the importance of
including all the regulated integrative health systems and professions
in whole person research. One of the major lessons of the COVID-19
pandemic and the importance of optimal health is the need for each of
the major systems as well as integrative protocols to be studied in
real world environments to determine the whole person effect of regular
care through specific approaches such as acupuncture, naturopathic
medicine, chiropractic, homeopathy, holistic nursing, massage therapy,
lifestyle and functional medicine approaches, direct entry midwifery,
and traditional healing approaches from Native American and indigenous
communities.
IHPC also supports the Center's proposed pain management research
agenda as outlined in the President's FY 2023 budget. According to the
President's budget, pain ``is a major public health problem and is the
most common reason why Americans use complementary and integrative
health practices.'' As a result, NCCIH supports a broad pain and pain
management research portfolio that includes basic and clinical research
and the development, evaluation, and implementation of complementary
and integrative pain management techniques. NCCIH is a leader of the
NIH-DoD-VA Pain Management Collaboratory, working with other Federal
agencies to support research on nonpharmacologic approaches to pain
management in innovative and integrative models of pain care delivery.
IHPC joins other organizations that belong to the Ad Hoc Group for
Medical Research in asking the subcommittee to prioritize NIH funding
by endorsing an appropriation of at least $49 billion for the NIH, a
$4.1 billion increase over the NIH's program level funding in FY 2022.
In addition, we urge the Committee to ensure that any funding for the
new Advanced Research Project Agency for Health (ARPA-H), supplements
the $49 billion recommendation for NIH's base budget, rather than
supplants the essential foundational investment in the NIH. Finally, we
urge that NCCIH receive a commensurate funding increase (7.9 percent)
in FY 2023.
federally qualified health centers
Federally Qualified Health Centers (FQHCs) are community-based
health care providers that receive funds from the HRSA Health Center
Program to provide primary care services in underserved areas. In
recent years, especially with the onset of the Nation's opioid crisis,
FQHCs have emerged as a platform for Integrative Whole Health
innovation and for the delivery of non-pharmacologic pain management
services. During the COVID-19 pandemic, select FQHCs have expanded
their services to deliver pain management services to an increased
number of uninsured and underinsured individuals. To advance and expand
the FQHC mission, IHPC endorses the recommendation issued by the
National Association of Community Health Centers to provide community
health centers with $1.8 billion in discretionary funding in FY 2023.
Thank you for considering our views. The IHPC looks forward to
working with you to enact the FY 2023 Labor, Health and Human Services
and Education Appropriations bill and to help ensure our priorities are
addressed in the final version of this important funding legislation.
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
[This statement was submitted by Margaret Erickson, PhD, RN, CNS,
APRN, APHN-BD, Co-Chair, Integrative Health Policy Consortium.]
______
Prepared Statement of the Interstitial Cystitis Association
summary of recommendations for fiscal year 2023
_______________________________________________________________________
--Provide $1.5 million for the IC Education and Awareness Program and
the IC Epidemiology Study at the Centers for Disease Control
and Prevention (CDC)
--Provide $49 billion for the National Institutes of Health (NIH) and
Proportional Increases Across all Institutes and Centers
--Support NIH Research on IC, including the Multidisciplinary
approach to the Study of Chronic Pelvic Pain (MAPP) Research
Network and Chronic Pain
_______________________________________________________________________
Thank you for the opportunity to present the views of the
Interstitial Cystitis Association (ICA) regarding interstitial cystitis
(IC) public awareness and research. ICA was founded in 1984 and is the
only nonprofit organization dedicated to improving the lives of those
affected by IC. The Association provides an important avenue for
advocacy, research, and education. Since its founding, ICA has acted as
a voice for those living with IC, enabling support groups and
empowering patients. ICA advocates for the expansion of the IC
knowledge-base and the development of new treatments. ICA also works to
educate patients, healthcare providers, and the public at large about
IC.
IC is a condition that consists of recurring pelvic pain, pressure,
or discomfort in the bladder and pelvic region. It is often associated
with urinary frequency and urgency. This condition may also be referred
to as painful bladder syndrome (PBS), bladder pain syndrome (BPS), and
chronic pelvic pain (CPP). It is estimated that as many as 12 million
Americans have IC symptoms. Approximately two-thirds of these patients
are women, though this condition does severely impact the lives of as
many as 4 million men. IC has been seen in children and many adults
with IC report having experienced urinary problems during childhood.
However, little is known about IC in children, and information on
statistics, diagnostic tools and treatments specific to children with
IC is limited.
The exact cause of IC is unknown and there are few treatment
options available. There is no diagnostic test for IC and diagnosis is
made only after excluding other urinary/bladder conditions. It is not
uncommon for patients to experience one or more years delay between the
onset of symptoms and a diagnosis of IC. This is exacerbated when
healthcare providers are not properly educated about IC.
The effects of IC are pervasive and insidious, damaging work life,
psychological well-being, personal relationships, and general health.
The impact of IC on quality of life is equally as severe as rheumatoid
arthritis and end-stage renal disease. Health-related quality of life
in women with IC is worse than in women with endometriosis, vulvodynia,
and overactive bladder. IC patients have significantly more sleep
dysfunction, and higher rates of depression, anxiety, and sexual
dysfunction.
Some studies suggest that certain conditions occur more commonly in
people with IC than in the general population. These conditions include
allergies, irritable bowel syndrome, endometriosis, vulvodynia,
fibromyalgia, and migraine headaches. Chronic fatigue syndrome, pelvic
floor dysfunction, and Sjogren's syndrome have also been reported.
ic public awareness and education through cdc
ICA recommends a specific appropriation of $1.5 million in fiscal year
2023 (FY 2023) 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 FY 2023.
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 Instagram 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 $49 billion for NIH in FY 2023. 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 doctor that specializes in
IC that can help diagnose and treat. I can't stress enough how
important finding the right doctor is. IC patients need a doctor 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
Chairwoman Patty Murray, Ranking Member Roy Blunt, 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 FY 2023 appropriations process for the Department of Health and
Human Services.
A. Tribal Specific Health Appropriation Priorities
1. Support the President's FY 2023 Budget Request for Tribal Health
Programs and Mandatory Funding for the Indian Health Service (IHS)
2. 340(b) Drug Pricing Program
3. Ensure that Medicare Reimburses Tribal Providers for Telehealth
Services at the IHS All-Inclusive Rate or OMB rate
B. Tribal Priorities Administration for Children and Families & the
Administration for Community Living
1. Child Welfare Programs Tribal Allocations Subpart 1, $350
million; Subpart 2, $120 million $3.6 million Tribal Set Aside
2. Promoting Safe and Stable Families $650 million for mandatory
programs and $120 million for discretionary programs
3. Fund Long Term Care
4. Older American act Title VI, part A,B Native American Nutrition
and Supportive Services- $55.5 million Title VI, $43 Million Nutrition
and Support Services.
a. tribal specific health appropriations priorities
1. Support the President's FY 2023 Budget Request for Tribal Health
Programs and Mandatory Funding for the Indian Health Service (IHS).--
The President requested $127.3 billion in discretionary funding and
$1.7 trillion in mandatory funding for the Department of Health and
Human Services in FY 2023 Appropriations. This is inclusive of $9.3
billion for the Indian Health Service. The request also seeks to
reclassify the entire IHS budget as mandatory for FY 2023. We fully
support the President's historical request and commitment to
implementing long term solutions to addressing the chronic underfunding
of Tribal health programs and delivering on the Nation's promises to
Indian Country. To include the proposal to reclassify IHS funding and
exempt the IHS budget from sequestration. We urge Congress to follow
suit and adopt the President's FY 2023 budget proposal.
2. 340(b) Drug Pricing Program.--The 340(b) program serves as a
critical safety net drug discount program that Tribal communities rely
on to serve their citizens and community members who comprise the most
vulnerable, underserved and isolated populations. The program has grown
tremendously bringing down the cost of prescription drugs by 25-50
percent. However, the actions of several drug manufacturers have
undermined Congressional intent and the 340(b) program resulting in
limitations on access to discounted prescription drugs. In 2021, HRSA
issued violation letters to manufactueres who refused to comply with
statutory obligations unless certain conditions were met. However,
despite HRSA acting swiftly to address this issue, the manufacturers
refused to come into compliance with the law. We urge Congress to take
steps to ensure drug manufacturers are compliant with the law.
3. Ensure that Medicare Reimburses Tribal Providers for Telehealth
Services at the IHS All.--Inclusive Rate or OMB Rate--Tribal healthcare
systems are under unprecedented strain in the aftermath of the public
health crisis and resulting economic crisis. The financial toll has led
to reductions in the availability of healthcare services. During the
public health crisis, many hospitals and clincs turned to telemedicine
as a necessary tool for the provision of healthcare. In early 2020, the
Centers for Medicare and Medicaid Services (CMS) waived many of the
telehealth restrictions on providers, technology, geographic areas and
services. As a result, use of telehealth visits increased substantially
in the Indian Healthcare System. The telehealth flexibilities that were
authorized by CMS increased access to primary, speciality and
behavioral healthcare services during the pandemic and should be made
permanent. However, while IHS and Tribal sites receive the IHS All-
Inclusive Rate for telehealth services under Medicaid, Medicare is
currently only reimbursing at the Part B rate which is only about $14
dollars per unit of care. Medicare should reimburse at the full
encounter rate to ensure providers can continue to utilize telehealth
as a viable option for services.
b. tribal priorities administration for children and families and
administration for community living
1. Child Welfare Programs Title IV B (subpart 1)--Tribal Allocation
$350 Million & Promoting Safe and Stable Families Social Security Act
Title IV B (subpart 2) $120 Million Tribal Allocation $3.6 Million.--
The pandemic amplified the existing disparities that Native children
and families experience in child welfare systems. Limited access to
supportive and rehabilitative services created an environment of
enhanced risk for removal of Native children from their homes. Foster
care is a reality that too many Native families face. Substance abuse,
mental health challenges, economic instability, financial insecurity,
and limited access to services continue to threaten the well-being of
Native families, especially Native children. Tribes need the tools and
resources to develop culturally based child centered trauma-informed
care solutions including trained child therapists. Title IV B provides
funding to Tribes to support community-based child welfare services.
Tribal tradition and culture are an integral component of our child
welfare programs because it has been proven that culturally tailored
programs and services increase community participation and lead to
better outcomes for American Indian and Alaska Native (AI/AN) children
and families. Increased funding coupled with maximum flexibility to use
these funds to provide ancillary child welfare services, including,
parenting classes, conducting home visits, and addressing issues, such
as, alcohol and substance abuse is essential so that AI/AN children can
remain with their families and in their Tribal communities.
2. Promoting Safe and Stable Families $650 million for mandatory
programs and $120 million for discretionary programs.--Increase funding
for the Promoting Safe and Stable Families program so that more Tribes
are able to access this critical funding. Addressing trauma, promoting
stronger families, and reducing the rates of foster care placements are
all important components of this program. We appreciate the
Administration's FY 2023 request for increased mandatory funding to
support this program. We recommend that the programmatic increases
include $650 million for mandatory programs and $120 million for
discretionary programs.
3. Fund Long Term Care.--Tribes are committed to ensuring that
elders receive the respect, resources and care that they deserve;
however, funding for elder programs is woefully inadequate to meet
existing and future needs. Finding facilities to house our elders is a
growing issue because many are cost prohibitive for both the elders and
Tribal governments. Tribes want to keep elders on their homelands and
in their homes so that they are close to their families and
communities. Staying connected to their families, Tribal communities
and cultures supports quality of life. In order to accomplish this we
need resources to support assisted living, long term care, home and
community based services and end of life hospice care. The Indian
Healthcare Improvement Act (IHCIA) grants the Indian Health Service
authorities for the provision of long term care but funding needs to be
appropriated to provide these services.
4. Older Americans Act Title VI, Part A, B Native American
Nutrition and Supportive Services--$55.5 million Title VI, $43 Million
Nutrition and Support Services.--Providing support services to our
elders is deeply rooted in our beliefs and ensures the survival of our
culture, traditions, and language. Title VI of the Older Americans Act
is the primary funding source for the provision of nutrition,
healthcare, and other holistic community-based cultural programs and
supportive services. However, funding for elder programs is woefully
inadequate to meet existing and growing needs. The Indian Healthcare
Improvement Act (IHCIA) authorized the Secretary of HHS to fund these
services but, to date, no funding has been appropriated for these
services.
The Jamestown S'Klallam Tribe continues to support the requests and
recommendations of the Northwest Portland Area Indian Health Board, the
National Indian Health Board, and the National Congress of American
Indians. Thank you.
[This statement was submitted by Hon. W. Ron Allen, Tribal
Chairman/CEO, Jamestown S'Klallam Tribe.]
______
Prepared Statement of Johnson & Johnson
On behalf of Johnson & Johnson's 144,000 global employees, I am
pleased to provide written testimony to the Senate 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 (FY) 2023 budget.
Robust funding for NIH is necessary to ensure the agency continues
to have the ability to fuel innovation in medical research, improving
the trajectory of healthcare in the United States and around the world.
NIH funding also encourages the pursuit of innovative solutions
essential in addressing the increasingly complex health threats
confronting the United States.
As a physician and scientist, I have dedicated much of my life to
translating basic scientific research into medical advances. In my role
as Executive Vice President, Chief External Innovation, Medical Safety
and Global Public Health Officer at Johnson & Johnson and as a board
member of 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
foundational research conducted by NIH-funded investigators plays an
important complementary role to private sector research and development
efforts. Specifically, healthcare companies build upon this
foundational research, and make substantial investments in R&D to
transform this foundational research into the breakthrough healthcare
products of tomorrow.
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 2021, Johnson & Johnson invested nearly $14.7 billion in research
and development across our pharmaceutical, consumer, and medical
technology 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, is facilitated by our 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
Johnson & Johnson Innovation, entrepreneurs and startups can discuss
the innovative ideas they're working on, seek to collaborate with
Johnson & Johnson scientists, and access our global expertise and
resources to accelerate their work. Through Johnson & Johnson
Innovation--Johnson & Johnson Development Corporation, they may obtain
venture capital funding to support their innovations. At Johnson &
Johnson Innovation--JLABS incubator sites--including a new JLABS @
Washington DC site in collaboration with Children's National and
BARDA--we support the life sciences ecosystem by helping entrepreneurs
and scientists realize their dreams of creating healthcare solutions
that improve lives. Their potentially disruptive, cutting-edge research
may lead to novel platforms, products or technologies--advances that
the scientific community could only imagine several years ago and that
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
and to the health of our Nation. In FY 2021, NIH research funding
directly and indirectly supported over 552,444 jobs and spurred nearly
$94.18 billion in new economic activity. Moreover, diseases such as
Alzheimer's, diabetes, cancer, and heart disease as well as current and
future pandemics, threaten the lives of millions of our citizens and
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. We must also continue to address public health
crises and areas of pipeline need such as emerging infectious diseases
and antimicrobial resistance. The pace of medical research must keep up
with these challenges, and it is the NIH that must fuel that research.
Investments in medical research over the last several decades 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 and increasingly
sophisticated areas of scientific inquiry. 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, nor a more critical
time to fund the NIH.
Johnson & Johnson believes that fully and consistently funding the
NIH is critical to 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 disease in the United States and
around the world.
[This statement was submitted by William N. Hait, MD, PhD,
Executive Vice President, Chief External Innovation, Medical Safety and
Global Public.]
______
Prepared Statement of Knowledge Alliance
Knowledge Alliance (KA), a non-partisan, non-profit organization,
is comprised of leading education organizations committed since 1971 to
the greater use of high-quality and relevant data, research, evaluation
and innovation in education policy and practice at all levels.
Collectively, we have spent the last 50 years supporting a set of
education programs focused on building and disseminating evidence to
improve teaching and learning in our Nation's classrooms.
Knowledge Alliance believes that programs at the Institute of
Education Sciences (IES)--such as the Regional Educational Laboratories
(RELs) and the Research, Development, and Dissemination (RD&D)
program--coupled with the Comprehensive Centers (CCs) and the Education
Innovation and Research (EIR) program at the U.S. Department of
Education (ED) are the foundation of the Nation's research,
dissemination and technical assistance infrastructure. We deeply
appreciate the increases in funding provided in Fiscal Year (FY) 22 for
these critical programs to better tie evidence to practice in our
schools and improve outcomes for students. Moreover, we know these
funds will be critical in supporting schools as districts utilize
evidence-based practices in their responses to COVID-19 learning loss
and the other additional educational challenges posed by this
transitional year, especially for student populations who have been
historically underserved and were significantly impacted by the
pandemic. We encourage Congress to continue to provide increases in
each of these programs for FY23 to continue leveraging critical
research, technical assistance, evaluation and innovation to help
States, districts and schools.
KA priority programs require additional Federal resources to
address the continuously growing State and local needs for education
research and technical assistance, as these programs provide critical
support for States, districts and schools. In response to challenges
from COVID-19, REL West and Comprehensive Center Regions 2, 13 and 15
provided 8 workshops to approximately 570 state, regional, district and
school staff on selecting and measuring evidence-based strategies using
American Rescue Plan (ARP) funds. The primary focus of each event was
to help State educational agencies (SEAs) develop strategies to support
local educational agencies (LEAs) in using their ARP funds to address
high-priority needs and select evidenced-based strategies. More
recently, the National Comprehensive Center established three
Communities of Practice (COP) to support SEAs and their partners in
three areas: (1) Using ARP funds to implement evidence-based
strategies; (2) Implementing school improvement strategies through an
equity lens; and (3) Planning for summer/extended learning drawing from
evidence-based practices where they exist. With recognition that States
and districts can, and should, work together to solve common
challenges, the National Comprehensive Center provides a unique space
for SEAs and LEAs to learn from each other as they engage around
specific problems of practice. In the COP around school improvement,
SEA and LEA leaders have already reported how bringing together school
leaders, teachers and districts in their community, through an equity
lens, is inspiring new, innovative, approaches to help low-performing
schools. Clearly, both RELs and CCs have been first in line to provide
technical assistance and evidence-based resources to interested SEAs
and LEAs. An increase in funding would allow these programs to expand
their work and better meet the ever-growing need for support.
Despite the evident need for education research, dissemination and
technical assistance infrastructure, evidence shows that this work
remains underfunded. Three recently released reports by the National
Academies of Sciences, Engineering and Medicine (NASEM) noted that IES
is currently overburdened and underfunded, preventing efficient grant
review cycles, adequate staffing levels and innovation within the
agency. In the NASEM report titled ``The Future of Education Research
at IES,'' there was consensus that ``Congress should re-examine the IES
budget, which does not appear to be on par with that of other
scientific funding agencies.'' The report notes that education research
programs at the National Science Foundation (NSF) and National
Institutes of Health (NIH) receive substantially more funds than IES
despite working with similar constituents on comparable issues.
Moreover, as the hub of all Federal education research work, IES is
best situated to effectively create and disseminate evidence-based
resources to the field. It is evident that KA's priority programs
require increases in FY23 to better meet the needs of States,
districts, and schools nationwide.
To support continued education research, evaluation and innovation
outlined above, we urge you to provide increases over FY22 levels in
FY23 for existing Federal research and development infrastructure. KA
proposes a critical investment of $815.0 million for the Institute of
Education Sciences (IES); $267.9 million for the Research Development
and Dissemination (RD&D) program at IES; $65.0 million for the Regional
Educational Laboratories (RELs) Program; $60.0 million for the
Comprehensive Centers (CCs); and $514.0 million for the Education
Innovation and Research (EIR) program
This request translates to approximately a 10 percent increase for
IES, RELs and CCs. We have requested an approximately 30 percent
increase for RD&D to account for how, as the hub of general education
research, it will be relied heavily upon to support research post-
COVID. Finally, KA's EIR request matches the President's FY23 budget,
which recognizes the importance of education research innovation and
proposes a significant investment in addressing the educator shortage,
an issue KA members are actively working on.
The below section provides greater detail on the request for each
of the programs outlined above. Thank you for your consideration of
these important recommendations. We believe that continued strong
support for, and investment in, the education research and development
infrastructure will help improve outcomes for students and effectively
leverage scarce Federal resources. Furthermore, it will empower States
and local school districts to develop and implement the innovative,
evidence-based approaches that work best for the students in their
communities.
fy23 appropriations asks
The Institute of Education Sciences. IES is a major source of
Federal funding for education research. Through its four research
centers- the National Center for Education Research (NCER), National
Center for Education Statistics (NCES), National Center for Education
Evaluation and Regional Assistance (NCEE) and the National Center for
Special Education Research (NCSER) -IES funds hundreds of grants and
contracts annually that support a wide range of research projects.
These centers support projects that provide vital information, often
with an equity focus, on students with disabilities, teacher
preparation and strategies for improving college and workforce
readiness, among other topics. In the past year, IES has successfully
pivoted its efforts to consider projects in the larger context of the
COVID-19 pandemic and recovery.
The What Works Clearinghouse produces reviews of research on
education curriculum and practice guides with evidence-based
recommendations to support teaching and learning. According to the
Jefferson Education Exchange, nearly a third of educators surveyed used
resources from the What Works Clearinghouse. In direct response to the
COVID-19 pandemic, the What Works Clearinghouse released a Rapid
Evidence Review of Distance Learning Programs that identifies and
reports on what works in distance learning educational programming from
Kindergarten onwards. Additionally, the WWC provides educational
webinars to better disseminate research in the field, most recently
they held a webinar on providing reading interventions for students in
grades 4-9.
Additional basic research could be done in areas of importance to
educators and policymakers if more funding were available, particularly
in the areas of postsecondary completion and workplace credentials. As
basic research moves into the applied realm, the What Works
Clearinghouse will continue to serve as a resource for educators
looking for effective, research-based interventions.
Regional Educational Laboratories. The 10 RELs nationwide, which
operate under 5-year contracts with ED, conduct applied research,
develop and disseminate research-based products and provide training to
States and school district staff as well as resources for educators,
families and caregivers. Since the RELs have a broad set of regional
stakeholders that extend beyond the SEA, they are well-attuned to a
wider range of student and teacher needs. In addition to forming
research partnerships focused on problems of practice in the field that
provide relevant and responsive research and findings that address
local needs; RELs utilize the resources of the WWC, such as the
practice guides, to break down the evidence into digestible chunks for
educator use. They have also developed webinars and other resources
based on the practice guides to aide in translating research for
educators. RELs are continuously developing tools that districts and
schools use to improve teaching and learning. In response to the
pandemic, RELs have provided evidence-based resources to help address a
host of critical challenges facing States, districts, educators and
families as they continue to navigate the impacts of COVID-19.
Education leaders in Michigan partnered with REL Midwest to develop
the Midwest Alliance to Improve Teacher Preparation (MAITP). From 2017
to 2021, MAITP conducted research with education leaders,
practitioners, policymakers and researchers in Michigan, Illinois and
Indiana to address teacher recruitment and retention.
To increase the number of teachers available to Michigan public
schools, MAITP members wanted to explore the validity of recruiting
nonteaching certified teachers. In 2021, REL Midwest published a study
that examined why some certified teachers no longer teach in Michigan
public schools. The study found approximately 61,000 teachers certified
in Michigan were not teaching in the State's public schools in 2017-18.
The study also identified increased salary and simplification of
certification requirements as desired incentives for teachers to
consider returning to the classroom. REL Midwest created a companion
infographic and documentary to communicate the study findings. The
Michigan Department of Education drew on the findings and launched the
``Welcome Back Proud Michigan Educator Campaign,'' an initiative that
seeks to recruit individuals with expired teacher certificates into the
teacher workforce by reducing-and in some cases, eliminating-
professional learning requirements for recertification.
Education Innovation and Research. The EIR Program, authorized by
Every Student Succeeds Act (ESSA), helps drive substantial and lasting
improvements in student achievement by supporting the development and
scale-up of successful innovations at the State and local levels. EIR
uses a tiered evidence approach that has two important design
principles: it provides more funds to programs with higher levels of
evidence, and it requires rigorous and independent evaluations so that
programs continue to improve, and future competitions can be geared
towards more promising areas of investment.
KA supports the Administration's FY23 EIR proposal which recommends
a historic, and needed, increase in funding for the program. EIR would
allow for the creation of more innovative evidence-based resources to
address the myriad of educational challenges facing the Nation. Of this
historic increase, $350 million would target projects that identify and
scale up evidence-based strategies to elevate and strengthen a teacher
workforce hit hard by COVID-19. Given the educator workforce shortage,
KA supports the use of these funds to support efforts to stabilize the
profession through improved support for educators and expanded
professional growth opportunities, including access to leadership
opportunities that can lead to increased pay and improved retention for
fully certified, experienced, and effective teachers.
Future Forward is a literacy intervention for students struggling
with reading from kindergarten through third grade that combines
intensive one-on-one tutoring during the school day with family
engagement support embedded in all aspects of the program. Ongoing
support from the U.S. Department of Education through the Education
Innovation and Research (EIR) grant program has allowed Future Forward
to rigorously evaluate their program with randomized controlled trials
and multi-site regression discontinuity analysis. The external
evaluation found the program yielded positive, statistically
significant impacts on reading achievement, literacy, and regular
school attendance. The EIR program has enabled Future Forward to
subsequently sustain, replicate and scale those practices. In December
of 2021, Future Forward was awarded an expansion-phase EIR grant and
will work over the next 5 years to expand to several dozen new schools
in rural communities across the country; prepare schools to take full
ownership over long-term program implementation to ensure
sustainability; and rebuild the online program management platform to
become a first of its kind integrated reporting system for supplemental
education programs. Future Forward was the recipient of a mid-phase EIR
grant in 2017 (the program was known as ``SPARK'') as well as an
Investing in Education (i3) grant in 2010.
Comprehensive Centers. The Comprehensive Centers (CCs) provide
technical assistance that builds the capacity of SEAs to help districts
and schools improve educational outcomes for all students, close
achievement gaps and increase the quality of instruction. The CCs
include 19 Regional Centers that work closely with States in their
regions on implementation of critical reforms in elementary and
secondary education, as well as one national center providing technical
assistance to the regional centers and SEAs. The CCs operate under a
Memorandum of Understanding with each SEA in the region, and the SEA
sets the scope of work to be conducted through the 5-year agreement.
In 2021, the National Comprehensive Center and national partners
launched the Summer Learning & Enrichment Collaborative (``the
Collaborative'') to support States, school districts and community
partners in using ARP funds to implement and expand evidence-based
summer learning and enrichment experiences for students, especially
those most impacted by the pandemic. Throughout the summer of 2021, the
Collaborative invited States, school districts, community partners, and
other stakeholders to participate in a series of eight virtual learning
opportunities to discuss and share promising practices in planning and
implementing summer experiences for all students and student groups.
The Collaborative hosted over 50 topical sessions for over 1,300
participants across 49 States. Sessions addressed a wide range of
topics from staff recruitment to student attendance, STEM partnerships,
developing community-school agreements and many more.
______
Prepared Statement of the Learning and Education Academic
Research Network
We are writing on behalf of the LEARN Coalition to express our
support for increased funding for several key education research
programs that the LHHS subcommittee will debate as part of the Fiscal
Year (FY) 2023 appropriations process. LEARN, a coalition of 41 leading
research colleges of education across the country, supports critical
investments in research aimed at advancing the scientific understanding
of learning and development. We advocate for greater funding for these
priorities across all Federal agencies, including the Institute of
Education Sciences (IES), the National Institute of Child Health and
Human Development (NICHD), and the National Institute of Mental Health
(NIMH). Specifically, LEARN is requesting no less than $815 million for
IES overall with $225 million dedicated to the Research, Development
and Dissemination (RD&D) line item and $70 million for the National
Center for Special Education Research (NCSER). Within the National
Institutes of Health (NIH), LEARN requests that $2.02 billion go
towards NICHD and $2.57 billion go towards NIMH. While advocating for
these increased resources for fiscal year 2023, we want to express our
appreciation for the increases for IES and NIH that were made in fiscal
year 2022.
institute of education sciences
As the primary Federal agency charged with supporting research for
education practice and policy, IES is essential to developing a
comprehensive, reliable, evidence base and ensuring that teaching and
learning practices are grounded in this evidence base. While 12-15
percent of NCER and NCSER's grant awards have been funded over the last
several years, the number of grant competitions offered by IES are
currently severely limited due to chronic understaffing within the
agency. Furthermore, NCSER was unable to fund all the grant
applications rated outstanding or excellent in fiscal year 2021 due to
a lack of sufficient funds. Such evidence displays how IES is currently
too understaffed and underfunded to support the Nation's education
infrastructure to its best potential.
Education research provides the bedrock of knowledge used by our
principals, teachers, counselors and professors to help preK-12
students and those seeking a postsecondary education succeed. The
increases provided to IES will support the continued examination of
what works and what does not work to further our education system's
curricula, instructional techniques and assessments. This additional
funding will bolster IES' work in relation to education research
overall as well as provide support as the Nation works towards COVID-19
recovery. Given the importance of developing reliable evidence during
this critical time, LEARN is requesting $815 million for IES overall
and $225 million for the RD&D line item within IES.
In addition, we recommend that funding for research in special
education, through NCSER, be increased to $70 million. NCSER is the
only Federal agency specifically designated to develop and provide
evaluations for programs for students with disabilities, but currently
has a budget that has remained relatively flat since FY2014. Research
funded by NCSER provides special educators and administrators evidence-
based resources that improve academic outcomes for children with or at
risk of disabilities. Special education students were dramatically
impacted by the change in schooling due to COVID-19; additional funding
to NCSER is necessary to support data and evidence-based resources that
will ensure a strong recovery for these students.
Of note, prominent experts have expressed concern over the
relatively small amount of funding being provided to IES compared to
other Federal research agencies. In a 2022 National Academy of
Sciences, Engineering and Medicine (NASEM) report titled ``The Future
of Education Research at IES,'' a diverse panel of 17 experts in the
field came to consensus that Congress should re-examine the IES budget
as it is currently severely underfunded despite the continuously
expanding work of IES. After hours of research and discussion, the
panel recognized that IES funding ``does not appear to be on par with
that of other scientific funding agencies,'' such as NIH or NSF,
despite being charged to lead the Nation's education research agenda,
collect and evaluate education research and disseminate evidence-based
resources to classrooms nationwide. In alignment with this trusted
outside evaluation, LEARN urges Congress to provide much needed fiscal
support to IES by appropriating no less than $815 million to the agency
overall, $225 million to the RD&D line time and $70 million to NCSER.
national institutes of health
There are critical education research programs within the NIH that
also need additional support. NICHD is essential to education research
as it examines brain functions and the impact of different educational
services on learning and development. LEARN supports an increase in
NICHD funding to $2.02 billion. This increase will ensure that
researchers can build on the knowledge already gained, evaluate what
works best in treating developmental disorders and develop new
research-based strategies to improve student's learning and
development. Additionally, it will support NICHD's efforts to
understand the long-term effects of COVID-19 on key at-risk
populations, including the cognitive development of children and
adolescents.
LEARN also supports an increase in funding for NIMH to $2.57
billion. This increase will help further understanding of the
behavioral, biological and environmental mechanisms necessary for
developing interventions to reduce the burden of mental and behavioral
disorders and optimize learning and development. At a time when the
mental health impact to children and adolescents remains dire following
the COVID-19 pandemic, this research is needed more now than ever.
The LEARN Coalition believes that collectively these key
investments in education research will drive improvements in school,
teacher and student performance in the coming years, strengthen the
Nation's education infrastructure and ensure a strong, educated
workforce in the long run. Thank you for considering these requests and
please contact Alex Nock at [email protected] with any questions,
comments or concerns.
Sincerely,
Camilla P. Benbow, Ed.D., Co-Chair, Learning and Education Academic
Research Network (LEARN)
Patricia and Rodes Hart Dean of Education and Human Development of the
Peabody College of Education and Human Development, Vanderbilt
University
Rick Ginsberg, Ph.D., Co-Chair, Learning and Education Academic
Research
Network (LEARN), Dean of the School of Education, University of Kansas
Glenn E. Good, Ph.D., Co-Chair, Learning and Education Academic
Research
Network (LEARN), Dean of the College of Education, University of
Florida
______
Prepared Statement of the Low Income Home Energy Assistance Program
The Low Income Home Energy Assistance Program authorized by 42
U.S.C. Sec. Sec. 8621 et seq. (LIHEAP) is the cornerstone of government
efforts to help needy seniors and families stay warm and avoid
hypothermia in the winter, as well as stay cool and avoid heat stress
(even death) in the summer. LIHEAP is an important safety net program
for low-income unemployed and underemployed families struggling in this
economy. LIHEAP helped approximately 6 million households afford their
energy bills in FY 2019.\1\ This crucial safety net program protects
the health and well-being of low-income seniors, consumers with
disabilities, and families with very young children., We respectfully
request that LIHEAP be funded at no less than $5.1 billion \2\ for FY
2023 and an additional $500 million in emergency contingency
funding.\3\
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\1\ Testimony of the National Energy Assistance Directors'
Association, House subcommittee on Labor, Health and Human Services and
Education and Related Agencies (April 8, 2019).
\2\ 42 U.S.C. Sec. 8621(b).
\3\ 42 U.S.C. Sec. 8621(e).
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The Urgent Need for Adequate LIHEAP Appropriations
Funding LIHEAP at no less than $5.1 billion for the regular program
in FY 2023 and an additional $500 million in emergency contingency
funding is imperative to address the record increases in energy prices
\4\ coupled with the record increases in the cost of other essential
necessities such as food and shelter \5\--price increases that hit the
lower wealth households the hardest. The U.S. Bureau of Labor
Statistics Consumer Price Index for April 2022 shows an 80.5 percent
12-month increase in the cost of fuel oil, an 11 percent increase for
electricity service and an 22.7 percent increase for natural gas. These
12-month increases in energy costs have been amongst the highest
increases in decades.\6\ Similarly the 12-month increase in the cost of
food and shelter are also the highest increases in decades. Low-income
households cannot escape these price increases. They are driving
untenable choices between basic necessities.\7\
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\4\ See U.S. Bureau of Labor Statistics, News Release, Consumer
Price Index--April 2022 (May 11. 2022), available at https://
www.bls.gov/news.release/cpi.nr0.htm (hereafter, ``May 11, 2002 CPI
Release''); Ivan Penn, ``Get Ready for Another Energy Price Spike: High
Electric Bills"(rates have jumped because of a surge in natural gas
prices and could rise rapidly for years) (May 3, 2022), available at
https://www.nytimes.com/2022/05/03/business/energy-environment/high-
electric-bills-summer.html.
\5\ Fn. 5, May 11. 2022 CPI Release.
\6\ Fn. 5, May 11, 2022 CPI Release; NEADA, ``Energy Inflation Hits
Lowest Income Families Hardest'' (April 12, 2022), available at https:/
/neada.org/energyinflationpr/.
\7\ See e.g., Christine Stephenson, ``Duke Energy, CenterPoint
bills are spiking in Bloomington. ,'' The Herald Times (Feb.22, 2022),
available at https://www.heraldtimesonline.com/story/news/local/2022/
02/22/duke-energy-bills-spiking-bloomington-monroe-county/6882306001/.
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Moreover, as moratoriums on disconnections of utility service
during COVID have ended, utility disconnections are at record high
levels in many parts of the country. The need for substantial LIHEAP
funding is greater than ever. One market analysis conservatively
estimates that while utility sector bad debt had declined to an average
annual rate of 2.9 percent ($2.5 billion total) between 2000--2019, in
2020 utility bad debt jumped to $5.2 billion.\8\ LIHEAP helps
households at risk of energy disconnections due to non-payment remain
connected to essential home energy and avoid choosing between energy
bills and rent or food.\9\ For very poor, struggling households, LIHEAP
helps bring the cost of these essential heating and cooling services
within reach for an estimated 6 million low-income households and helps
them stay connected.
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\8\ Kaulkin Ginsburg, ``The Kaulkin Report 2022 Ed.'' Kaulkin
Ginsburg Co. at page 36; NEADA Press Release, ``Families are Drowning
in Utility Debt: NEADA Calls for Additional Funding for Energy
Assistance'' (April 26, 2022)(estimated utility arrearages increased to
$23 billion at the end of 2019; 20.1 million households had utility
debt), available at https://neada.org/wp-content/uploads/2022/04/
utilitydebtpr4-26.pdf.
\9\ See e.g., Tami Luhby, ``Utility Shutoffs loom as energy prices
soar and moratoriums end. But help is available'' (April 24, 2022),
available at https://www.abc12.com/news/national/utility-shutoffs-loom-
as-energy-prices-soar-and-moratoriums-end-but-help-is-available/
article_85b1942f-1f6d-5799-8278-cbf8bf303f79.html; Mark Wolfe,
``Opinion: Struggling US Families face a wave of power shutoffs if
Congress doesn't act'' (updated April 28, 2022), available at https://
www.cnn.com/2022/04/28/perspectives/utility-bills-power-shutoffs/
index.html.
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Energy bills are not affordable for struggling, low-income
households. The average LIHEAP household in 2015 devoted over 8 percent
of total household income just for home energy services, compared to an
average of under 4 percent for all U.S. households. Home energy is also
more expensive during prolonged periods of extreme temperatures because
households use more fuel to keep the home at safe temperatures.
Prolonged colder than normal temperatures, such as the sharp cold wave
that resulted in 22 deaths and affected a wide swath of the country
January to March 2019,\10\ can result in an unexpected, increased use
of heating fuels. Likewise, prolonged hot temperatures, which are
becoming more common, can result in an increased need for air
conditioning, particularly for consumers with certain medical
conditions.\11\
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\10\ See e.g., ``Extreme cold in the Midwest led to high power
demand and record natural gas demand,'' US Energy Information
Administration, Today in Energy (Feb. 26, 2019) available at https://
www.eia.gov/todayinenergy/detail.php?id=38472.
\11\ Lynne Page Snyder and Christopher Baker, Affordable Home
Energy and Health: Making the Connections, AARP Public Policy Institute
(June 2010) at pp.10-11, available at https://www.aarp.org/money/low-
income-assistance/info-06-2010/2010-05-consumer.html.
---------------------------------------------------------------------------
Yet, struggling low-income households are at risk of disconnection
from essential utilities because they do not have the savings or income
on hand to afford their energy bills. The Federal Reserve finds that 4
in 10 households report that they would have difficulty with an
unexpected expense of $400 and that 3 in 10 households are either
unable to pay their bills or are a modest financial setback from
hardship.\12\ A growing body of research is documenting the rise in
household income volatility (the dramatic fluctuation of income over
time) and the impacts on household well-being.\13\ Approximately one-
third of households experience income volatility \14\ and irregular
work schedules were the leading cause of volatility.\15\ When income is
hard to predict, paying for necessities such as utility service can be
difficult, if not impossible, without help from programs like LIHEAP.
Households experiencing income volatility tend to turn to more
expensive alternative financial services products such as payday
loans.\16\ Low and moderate income consumers who experience income
volatility have much higher rates of skipped bills, skipped medical
care, skipped housing payments and food insecurity.\17\
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\12\ 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.
\13\ 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/;
Pew Charitable Trusts, How Income Volatility Interacts with American
Families; Financial Security (March 9, 2017) available at https://
www.pewtrusts.org/en/research-and-analysis/issue-briefs/2017/03/how-
income-volatility-interacts-with-american-families-financial-security.
\14\ 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/; 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.
\15\ Income Volatility: A Primer (May 1, 2016) The Aspin Institute
Financial Security Program and EPIC at p.5, available at https://
www.aspeninstitute.org/publications/income-volatility-a-primer/; 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/.
\16\ Daniel Schneider and Kristen Harknett, supra, fn. 15, 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).
\17\ 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/.
---------------------------------------------------------------------------
LIHEAP protects the health of the frail elderly, the very young and
those with chronic health conditions, all of whom are highly
susceptible to temperature extremes. LIHEAP also helps keep families
together by keeping homes habitable during cold winters and sweltering
summers.
LIHEAP Is a Critical Safety Net Program for the Elderly, the Disabled
and Households with Young Children
Recent national studies have documented the dire choices low-income
households face when energy bills are unaffordable. Because adequate
heating and cooling are tied to the habitability of the home, low-
income families will go to great lengths to pay their energy bills.
According to the US Energy Information Agency (EIA), one in three
households face challenges meeting energy needs, with over 20 percent
forgoing basic necessities to pay their energy bills, over 10 percent
report keeping their home at unsafe temperatures and almost 15 percent
received a disconnection notice.\18\ EIA's analysis is consistent with
other studies showing that low-income households faced with
unaffordable energy bills cut back on necessities such as food,
medicine and medical care.\19\ The U.S. Department of Agriculture has
documented the connection between low-income households, especially
those with elderly persons, experiencing very low food security and
heating and cooling seasons when energy bills are high.\20\ A pediatric
study in Boston documented an increase in the number of extremely low
weight children, age 6 to 24 months, in the 3 months following the
coldest months, when compared to the rest of the year.\21\ It is
shocking that in this wealthy nation, so many face heat-or-eat choices
where families go without food during the winter to pay their heating
bills, and their children fail to thrive and grow. A 2007 Colorado
study found that the second leading cause of homelessness for families
with children is the inability to pay for home energy.\22\
---------------------------------------------------------------------------
\18\ ``One in three U.S. households faces a challenge in meeting
energy needs,'' US Energy Information Administration, Today in Energy
(Sept. 19, 2018) available at https://www.eia.gov/todayinenergy/
detail.php?id=37072.
\19\ See e.g., National Energy Assistance Directors' Association,
2018 National Energy Assistance Survey, Tables in section IV, F and G
(Dec. 2018) (to pay their energy bills, 32 percent of LIHEAP recipients
went without food, 41 percent went without medical or dental care, 31
percent did not fill or took less than the full dose of a prescribed
medicine, 13 percent got a payday loan). Available at http://neada.org/
wp-content/uploads/2015/03/liheapsurvey2018.pdf.
\20\ Mark Nord and Linda S. Kantor, Seasonal Variation in Food
Insecurity Is Associated with Heating and Cooling Costs Among Low-
Income Elderly Americans, The Journal of Nutrition, 136 (Nov. 2006)
2939-2944.
\21\ Deborah A. Frank, MD et al., Heat or Eat: The Low Income Home
Energy Assistance Program and Nutritional and Health Risks Among
Children Less Than 3 years of Age, AAP Pediatrics v.118, no. 5 (Nov.
2006) e1293-e1302. See also, Child Health Impact Working Group,
Unhealthy Consequences: Energy Costs and Child Health: A Child Health
Impact Assessment of Energy Costs And The Low Income Home Energy
Assistance Program (Boston: Nov. 20060.
\22\ Colorado Interagency Council on Homelessness, Colorado
Statewide Homeless Count Summer, 2006, research conducted by University
of Colorado at Denver and Health Sciences Center (Feb. 2007).
---------------------------------------------------------------------------
When people are unable to afford paying their home energy bills,
dangerous and even fatal results occur. In the winter, families resort
to using unsafe heating sources such as space heaters, ovens and
burners, all of which are fire hazards. Space heaters pose 3 to 4 times
more risk for fire and 18 to 25 times more risk for death than central
heating. In 2007, space heaters accounted for 17 percent of home fires
and 20 percent of home fire deaths.\23\ In the summer, the inability to
keep the home cool can be lethal, especially to seniors. According to
the CDC, older adults, young children and persons with chronic medical
conditions are particularly susceptible to heat-related illness and are
at a high risk of heat-related death. The CDC reports that 3,442 deaths
resulted from exposure to extreme heat during 1999-2003.\24\ The CDC
also notes that air-conditioning is the number one protective factor
against heat-related illness and death.\25\ LIHEAP assistance helps
these vulnerable seniors, young children and medically vulnerable
persons keep their homes at safe temperatures during the winter and
summer and also funds low-income weatherization work to make homes more
energy efficient.
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\23\ John R. Hall, Jr., Home Fires Involving Heating Equipment
(Jan. 2010) at ix and 33.
\24\ CDC, ``Heat-Related Deaths--United States, 1999-2003'' MMWR
Weekly, July 28, 2006.
\25\ CDC, ``Extreme Heat: A Prevention Guide to Promote Your
Personal Health and Safety'' available at http://emergency.cdc.gov/
disasters/extremeheat/heat_guide.asp.
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LIHEAP is an efficient and effective targeted health and safety
program that works to bring fuel costs within a manageable range for
vulnerable low-income seniors, the disabled and families with young
children. We respectfully request that LIHEAP be funded at no less than
$5.1 billion in FY 2023 and an additional $500 million in emergency
contingency funding.
[This statement was submitted by Olivia Wein, Staff Attorney,
National
Consumer Law Center.]
______
Prepared Statement of the Lymphatic Education & Research Network
_______________________________________________________________________
Key Recommendations:
--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 National Institutes of Health (NIH) with $49 billion
for FY 2022 and advance lymphatic disease research by expanding
resources and encouraging better coordination among relevant
institutes and centers
--Provide the Centers for Disease Control and Prevention (CDC) with
$11 billion for FY 2022 and enable $6 million for the Chronic
Disease Education and Awareness Program.
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, and distinguished members
of the subcommittee, thank you for the opportunity to submit the
priorities of the lymphatic diseases community you as you consider FY
2023 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 through education, research, and advocacy.
These include lymphedema, lipedema, lymphatic anomalies, and the
continuum of lymphatic diseases. 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. We are currently
isolated and alone.
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. 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
must be worn daily by patients.
fiscal year 2023 appropriations recommendations
We have been hopeful with recent advancements, but more needs to be
done. We ask that within 20 years, we will make lymphedema and other
lymphatic diseases truly treatable. 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 $49 billion for NIH in FY 2023.
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 are grateful to the subcommittee for continuing to support the
establishment of 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. We ask that you continue to impress on NIH the critical need
for this Commission and how they can work with relevant stakeholders
such as ourselves. 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. We
appreciate some steps that NIH is taking to address the subcommittee's
and our concerns about the National Commission, but we still are not at
the point where the Commission is set to begin key work. While we
remain hopeful that our continued work with NIH will continue to pay
off, strong support from Congress remains essential for our success.
LE&RN also joins the public health community in asking Congress to
provide the Centers for Disease Control and Prevention (CDC) with $11
billion through FY 2023 and to increase funding to increase awareness,
education, and surveillance of lymphatic diseases. We encourage the
subcommittee to support $6 million for the Chronic Disease Education
and Awareness Program in FY 2023 which 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
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
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 (FY) 2023
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 strongly supports President Biden's ongoing and
demonstrated commitment to maternal health in his HHS budget proposal
for FY 2023, which includes strong increases for critical programs
supporting families, and we recommend the following 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 no
less than $1.816 billion for NICHD's groundbreaking biomedical research
activities in FY 2023. 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.
Additionally, now that the Task Force on Research Specific to
Pregnant and Lactating Women (PRGLAC) has laid the foundation for
addressing research on safe and effective therapies for pregnant and
lactating women in clinical trials by releasing recommendations in
September 2018, as mandated by Congress in the 21st Century Cures Act
(Public Law 114-255), and provided an additional implementation plan
increased funding will allow for NICHD to more closely look at ways to
include and integrate pregnant and lactating women in clinical trials.
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. We support the
inclusion of this dedicated funding to address the Nation's preterm
birth crisis.
Surveillance for Emerging Threats to Mothers and Babies Initiative:
March of Dimes recommends funding the Surveillance for Emerging Threats
to Mothers and Babies Initiative Program (known as SET-NET) within the
National Center for Birth Defects and Developmental Disabilities at
Centers for Disease Control and Prevention (CDC) at $100 million. SET-
NET was created during the Zika outbreak, which allowed CDC to create,
a unique nationwide mother-baby linked surveillance network to monitor
the virus' impact in real-time to inform clinical guidance, educate
health care providers and the community, and connect families to care.
Unfortunately, States were unable to sustain systems due to the program
being chronically underfunded, and we were left without a national
system to mobilize when COVID-19 struck.
Consequently, we have an incomplete picture on how to best care for
mothers and babies with confirmed or suspected virus infection as the
CDC currently only supports 28 State, local, and territorial health
departments. The increased funding will allow for CDC to address these
knowledge gaps and expand the initiative to provide real-time clinical
and survey data from all 50 States, territories and jurisdictions on
the impact of COVID-19 and new public health threats.
Perinatal Quality Collaboratives: PQCs are state or multistate
networks working to improve the quality of obstetric care and improve
outcomes. Currently, CDC funds 13 State-based PQCs that are
implementing recommendations across health facility networks. However,
many PQCs lack adequate resources to meet demands and reach their
maximum potential. We request a specific funding level be set-aside
under the $164 million Safe Motherhood Initiative request to fully
scale these programs in all States.
Maternal Mortality Review Committees: Under the Enhancing Reviews
and Surveillance to Eliminate Maternal Mortality (ERASE MM) Program,
CDC provides funding, technical assistance, and guidance to state
maternal mortality review committees. These multidisciplinary
committees identify, review and characterize maternal deaths and
prevention opportunities. Currently, CDC has made 24 awards and
supports 25 State agencies and organizations that coordinate and manage
MMRCs. However, more standardized data collection is needed to help
examine all the factors contributing to severe maternal mortality,
preventable deaths, and poor birth outcomes. To this end, we request a
specific funding level be set-aside under the $164 million Safe
Motherhood Initiative request to reach all 50 States, DC, and Puerto
Rico and Tribes with enhanced technical assistance to maximize MMRCs.
Newborn Screening: Newborn screening is one of our Nation's most
successful public health programs. Each year, nearly every one of the
approximately 4 million infants born in the United States is screened
for certain genetic, metabolic, hormonal and/or functional conditions.
The early detection afforded by newborn screening ensures that infants
who test positive for a screened condition receive prompt treatment,
saving or improving the lives of more than 12,000 infants each year.
Both the Newborn Screening Quality Assurance Program at CDC and the
Heritable Disorders program at Health Resources and Services
Administration's (HRSA) have significantly improved the quality of
newborn screening programs throughout the country. NSQAP works hand-in-
hand with state laboratories by performing quality testing for more
than 500 laboratories to ensure the accuracy of newborn screening
tests. Where the Heritable Disorders program provides assistance to
States to improve and expand their newborn screening programs and
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). To continue sustaining, improving, and
enhancing these programs, March of Dimes urges funding of $29 million
for NSQAP and $29.883 million for the Heritable Disorders program for
FY23.
In addition, we request $15 million under the CDC to support full
implementation of the Recommended Uniform Screening Panel (RUSP) in all
50 States. These additional resources for timely implementation of
newborn screening conditions with a goal of complete RUSP
implementation nationwide by 2025.
Lastly, we request $2 million under HRSA to support a newborn
screening study. It would direct HHS to commission a study with the
National Academy of Medicine (NAM) on uniform screening panel review
and recommendation processes to identify factors that impact decisions
to add new conditions to the uniform screening panel, to describe
challenges posed by newly nominated conditions, including low-incidence
diseases, late onset variants, and new treatments without long-term
efficacy data.
Grants for Maternal Depression Screening and Treatment: 1 in 5
women are affected by anxiety, depression, and other maternal mental
health (MMH) conditions during pregnancy or the year following
pregnancy. These illnesses are the most common complication of
pregnancy and childbirth, impacting 800,000 women in the United States
each year. Sadly, MMH conditions often go undiagnosed and untreated,
increasing the risk of multigenerational long-term negative impact on
the mother's and child's physical, emotional, and developmental health,
increasing the risk of poor health outcomes of both the mother and
baby. Furthermore, women of color and women who live in poverty are
disproportionately impacted by MMH conditions, experiencing them 2-3
times the rate as White women.
At the current funding level, only seven States have received
grants to provide real-time psychiatric consultation, care
coordination, and training for front-line providers to better screen,
assess, refer and treat pregnant and postpartum women for depression
and other behavioral health conditions. March of Dimes urges the
Committee to provide $11.5 million in fiscal Year2023 to add five
programs and provide technical assistance to non-grantee States.
Maternal Mental Health Hotline: We thank the Committee for funding
$4 million in FY22 to the new maternal mental health hotline launched
by HRSA. This funding will allow qualified counselors to staff a
hotline 24 hours a day and conduct outreach efforts on maternal mental
health issues. COVID-19 has exacerbated maternal mental health
conditions at 3-4 times the rate prior to the pandemic and leaving
these conditions untreated can have a long-term effects. We urge the
Committee to support President Biden's request of $7 million to allow
for the hotline to provide text messaging services, culturally-
appropriate support, and continue public awareness efforts.
conclusion
March of Dimes looks forward to working with you 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 maternal
mental health that impacts mother, infants and families.
______
Prepared Statement of Meals on Wheels America
Dear Chair Murray, Ranking Member Blunt, and Members of the
subcommittee:
Thank you for the opportunity to submit testimony concerning Fiscal
Year 2023 (FY23) 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 Nationwide network of community-based
senior nutrition providers and the individuals they serve, we are
grateful for your longstanding leadership and support for the program.
For 50 years, these programs have served as daily lifelines, providing
hundreds of millions of meals and vital social connection to a growing
number of older adults who rely on the OAA Nutrition Program to meet
their basic needs. The critical role and significance of this
bipartisan legislation have been made even more evident throughout the
COVID-19 pandemic, in which local home-delivered and congregate
programs continue to experience dramatic and sustained increases in the
number of older adults who require nutrition and social support.
To sustain these proven and effective nutrition programs that
reduce senior hunger and loneliness, improve health and well-being, and
enable independence, appropriations increases are urgently needed in FY
2023. Accordingly, we are calling for a minimum of $1,933,506,000 for
the OAA Nutrition Program to be included in the final FY 2023 Labor,
Health and Human Services, Education and Related Agencies (Labor-HHS-
Ed) Appropriations bill. The specific line-item requests are:
--Congregate Nutrition Services (Title III-C-1)--$965,342,000
--Home-Delivered Nutrition Services (Title III-C-2)--$791,342,000
--Nutrition Services Incentive Program (NSIP) (Title III)--
$176,822,000
This FY23 request reflects the amount necessary to maintain current
levels of service, while enabling the network to expand and adapt to
serve more seniors. As our country strives to respond, recover and
rebuild from the COVID-19 health and economic crises, these nutrition
programs are a lifeline for millions of older adults and the services
they provide must flex to meet the need. We must not go backwards and
instead invest more significantly in these cost-effective programs that
allow individuals to age at home, with better health and independence,
outside of costly healthcare facilities.
Overseen by ACL's Administration on Aging and implemented at the
local level through thousands of community-based providers, the OAA
Nutrition Program delivers nutritious meals, social connection and
safety checks to adults 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 five decades.
Nutrition is a crucial part of overall health, development, and
quality of life and is fundamental to healthy aging. Older adults who
are food insecure and lack consistent access to nutritious meals
experience worse health outcomes and are at increased risk for heart
disease, depression, diabetes and declines in cognitive function and
mobility than those who are food secure.\1\ Most older Americans
possess at least one factor that puts them at greater risk of food
insecurity, malnutrition, social isolation and/or loneliness, thereby
increasing the likelihood of experiencing negative health effects.
Despite the wide recognition of the relationship between healthy aging
and access to nutritious food and regular socialization, millions of
older adults were struggling to meet these basic needs even prior to
the COVID-19 pandemic.
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\1\ Ziliak and Gunderson, 2021, The Health Consequences of Senior
Hunger in the United States: Evidence from the 1999-2016 NHANES, report
prepared for Feeding America, available at www.feedingamerica.org/
research/senior-hunger-research/senior.
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The reality of senior hunger today is sobering, and there are
millions more older adults who need our help, but who we are not
reaching today. We know in 2020, during the pandemic, over 9 million
(12 percent) older adults 60+ were threatened by hunger--nearly 5.2
million (7 percent) of whom experienced low food security or very low
food security. Nationwide, that is one in eight older adults struggling
with hunger--and the fraction of seniors experiencing very low food
security has increased almost 90 percent since 2001.\2\ It has also
been estimated that up to almost half of all older adults may be at
risk of becoming or is already malnourished.\3\ Today, millions of
seniors experience some degree of food insecurity and are forced to
make choices about the foods they eat due to financial strain, and/or
forgo eating properly to pay for utilities, rent and/or medication.
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\2\ U.S. Census Bureau, 2020, Current Population Survey (CPS)
December Food Security Supplement, dataset available at https://
www.census.gov/data/datasets/time-series/demo/cps/cps-supp_cps-repwgt/
cps-food-security.html.
\3\ Kaiser et al., 2010, ``Frequency of malnutrition in older
adults: a multinational perspective using the mini nutritional
assessment'', Journal of the American Geriatrics Society 58(9):1734-8,
abstract available at https://pubmed.ncbi.nlm.nih.gov/20863332/.
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As greater awareness of food insecurity, social isolation and
loneliness and their negative effects on physical and mental health
have emerged since the COVID-19 pandemic, it is important to note that
older adults in particular--especially those who were already homebound
and/or living in rural areas--have long been at higher risk of these
threats to healthy aging. Older adults have unique challenges
maintaining community connections and accessing healthcare, which can
be further compounded if one has physical limitations, lack of
transportation, inadequate financial resources, and/or other obstacles
to accessing resources.
Certain segments of the population experience a range of different
challenges at disproportionately higher rates. As examples, older
adults who are racial or ethnic minorities; lesbian, gay, bisexual,
transgender, and queer (LGBTQ+); living with disabilities or limited
mobility; living in or near poverty; and in rural areas face systemic
inequities that too often result in a lack of adequate resources and/or
access to services they need to remain well in later life.
The OAA Nutrition Program is designed to reduce hunger, food
insecurity and malnutrition, and promote socialization and the overall
health and well-being of older adults. OAA services, including
congregate and home-delivered meals, are targeted toward seniors with
the greatest social and economic need, including those who are low-
income; are a racial or ethnic minority; live in a rural community;
have limited English proficiency; and/or are at risk of institutional
care.
The impact of these services on seniors' lives is powerful, and
older adults who receive them have better health because of
participating. Most seniors receiving OAA nutrition services
consistently report that participating in the program helps them feel
more secure, prevents falls or fear of falling, and allows them to stay
in their own home.\4,5\ In turn, this helps avoid preventable emergency
room visits, hospital admissions and readmissions, extended stays in
rehab, and premature institutionalization--ultimately reducing our
Nation's health care costs.
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\4\ Administration for Community Living (ACL), 2019, National
Survey of OAA Participants, available on ACL's AGID Custom Tables,
available at https://agid.acl.gov/.
\5\ Meals on Wheels America, 2015, More Than a Meal Pilot Research
Study, report prepared by Thomas & Dosa, available at
www.mealsonwheelsamerica.org/learn-more/research/more-than-a-meal/
pilot-research-study.
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A rigorously designed study from 2015 found that older adults
receiving home-delivered meals experienced statistically significant
improvements in health than their counterparts who did not receive
services. The group who received home-delivered meals and safety checks
were more likely to have improved physical and mental health, including
reduced feelings of anxiety and loneliness, and fewer hospital
admissions and falls.\6\ On the ground, senior nutrition program staff
and volunteers delivering meals can help identify and promptly notify
caregivers and healthcare providers of a change in an older adult's
condition so that necessary steps can be taken to address urgent and/or
developing health conditions and medical needs, both physical and
mental.
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\6\ See footnote 5.
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It is often through an older adult's need for nutrition services
that they become aware of and connected to other services available in
their communities. For many Meals on Wheels participants, staff and
volunteers may be the only individual(s) she or he sees that day.
Social connection is part of the Meals on Wheels model and can include
intentional and additional face-to-face conversation during delivery or
enhanced programming, like friendly visiting or telephone reassurance
calls. Further, in-home safety services include a regular environmental
safety check and established approach for addressing identified
hazards, fall risks, and home modification needs. For example, Meals on
Wheels programs helped refer and/or serve an estimated 18,000 older
adults who needed home repairs in 2018, and 34 percent of programs
report directly offering home repair and modification services.\7\
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\7\ Meals on Wheels America, 2021, Membership Perspectives and
Practices Survey, research conducted by Trailblazer Research (report in
publication).
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The power and importance of the OAA Nutrition Program was never
more clear than during the COVID-19 pandemic. Practically overnight,
the thousands of programs across the country faced an unprecedented
surge in demand as the number of older adults sheltering in place
increased and congregate centers shifted ways of operating. Programs
quickly adapted traditionally their high-touch service model to
continue safely offering senior clients critical, person-centered
supports that go well beyond the meal itself.
Programs like Meals on Wheels were and continue to be pivotal to
our Nation's pandemic response and recovery, and senior nutrition
programs have been highly sought out for the trusted nutrition and
social connections they offer. Despite the incredible response from the
senior nutrition network to quickly scale services, challenges remain
in addressing the demand. A survey of Meals on Wheels America
membership last year found 97 percent of programs believe that there
continues to be substantial unmet need in their communities and about
60 percent of programs reported that the major limitation to serving
meals to all the seniors in their community who need them is funding to
pay for the meals.\8\ The gap between those struggling with hunger and
those receiving nutritious meals through the OAA will continue to widen
across the country if not adequately addressed with the necessary
support and investment from both public and private sources.
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\8\ Meals on Wheels America, July 2021, 2021 Mid-year COVID-19
Pulse Survey, available at www.mealsonwheelsamerica.org/learn-more/
research/covid-19-research-portfolio.
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Even prior to the pandemic, Federal funding for aging services was
not keeping pace with increasing demand, rising costs and inflation.
Now, more than 2 years into this public health emergency, programs are
continuing to deliver life-saving services at sustained high rates with
ongoing and emerging challenges and uncertainties. Currently, 8 in 10
Meals on Wheels programs are still serving more home-delivered meals
and clients than they were before COVID-19, and many of them are taking
drastic steps to sustain their programs due to funding challenges. Some
of these measures include but are not limited to adding seniors to
waiting lists, discontinuing, or cutting back services. As of April
2022, 20 percent of Meals on Wheels programs reported adding clients to
a waiting list. Most senior nutrition programs are currently facing at
least one significant barrier, such as rising costs of inflation, food,
and gas (necessities like beef and gas have been up 16 percent and 38
percent, respectively) or sustaining funding, and a third have reported
that increased operating costs are requiring them to tap into reserve
funding.\9\
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\9\ Meals on Wheels America, April 2022, Spring Member Pulse
Survey, available at www.mealsonwheelsamerica.org/learn-more/research/
covid-19-research-portfolio.
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Thanks to your leadership, ACL received emergency funding necessary
to help address the significant needs presented by the pandemic. ACL
and its programs have subsequently been able to reach new communities
and people who have long needed services, such as meals, but were not
receiving them. Senior nutrition programs nationwide have expanded
capacity, innovated operations, and shown that their services can
literally be a matter of life and death. Now we are at a crossroads.
Pandemic-level funding for these programs must be sustained. We must
not go backwards.
We understand the difficult decisions you face with respect to
annual appropriations bills and other budgetary challenges. However,
the risks and benefits of healthy aging cannot be underestimated, both
in social and economic costs. The requested appropriations increase
will help provide the funding levels necessary for community-based
nutrition programs to serve more older adults and sufficiently address
the increased demand for services and help offset the higher operating
costs they are experiencing.
In closing, as the subcommittee develops its FY23 Labor-HHS-
Education appropriations bill, we urge you to fund programs that are
critical to healthy aging, including $1.934 billion for the OAA
Nutrition Program, so that local community-based senior nutrition
programs can ensure the health, safety and social connectedness of our
Nation's older adults, build the capacity of ACL's programs and
services, and bridge the growing gaps and unmet need for services in
communities nationwide. Thank you for your leadership, support and
consideration. We look forward to working together to ensure that no
older adult in America is left hungry and isolated.
[This statement was submitted by Ellie Hollander, President and
CEO, Meals on Wheels America.]
______
Prepared Statement of METAvivor
fiscal year 2023 appropriations recommendations
_______________________________________________________________________
--Please provide the National Institutes of Health (NIH) with an
increase of at least a $3.5 billion for FY 2023 to bring total
agency funding up to a minimum of $49 billion annually.
--Please provide separate and distinct funding for the emerging
Advanced Research Projects Agency for Health (ARPA-H) at
NIH, which would further support this promising effort
without disrupting ongoing NIH efforts.
--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 $5 million for a pilot program at CDC to modernize
the Surveillance, Epidemiology, and End Results Research
Program (SEER) Registry to better capture the experience of
metastatic cancer patients.
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, 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
FY 2023 appropriations for medical research and public health. The
community is deeply grateful for the sustained investment in NIH, and
emerging calls for a robust and comprehensive effort to enhance cancer
research. Please maintain this commitment for FY 2023 by supporting
innovative medical research, including the reinvigoration of the
``moonshot'' and by providing adequate resources for public health
programs, including new funds to modernize the SEER registry (building
on prior committee recommendations).
about metavivor
My name is Jamil Rivers. I had a typical family before my diagnosis
of ``de novo'' metastatic breast cancer. I was 39 years old, married,
with three children and a full-time job. We were very active and always
doing something. I have a big, tight-knit family and we love to travel.
I had just changed jobs and we moved into a new house. I never missed a
beat--and then my husband was diagnosed with stage-one colon cancer. I
became his caregiver. It was in 2017, and everyone got sick in the
wintertime like we always do. We had colds and were coughing, but my
cold didn't go away. I also had this pain and this pinch, like I had
pulled a muscle on my right side. When I went to the doctor about my
cold and cough, they had prescribed me antibiotics. I also asked for an
ultrasound because appendicitis runs in my family. The results showed
that I had lesions in my liver. I had no other symptoms and no other
pain, but further testing showed I had stage IV ``de novo'' metastatic
breast cancer. It was the most shocking news ever.
The breast cancer had spread to my liver, my spleen, lymph nodes,
lungs, bones, my abdomen and my chest wall. I was devastated. I'm
blessed with this beautiful family and my kids are really young. At the
time they were only 5, 6 and 16 years old. Why would God bless me with
this beautiful family and then strip me from them? I couldn't wrap my
brain around the fact that my husband and I could both have a serious
health issue. It just wasn't a possibility.
``Who is going to take care of our kids?'' That was the first thing
I thought about in the midst of my devastation. But after that, I
realized I had to survive for them; I have to be here for them. I
wanted my kids to know that I did everything I could possibly do in my
power to be here for them. I had to process my diagnosis so I could
focus on my health. You never think this could happen to you but it
did. It happened to me.
I'm the type of person who, when a challenge is brought to me, I
figure out how to execute it and get it done. I basically had to figure
out. I empowered myself and armed myself with as much knowledge,
information, resources and support as possible. My mission was
survival.
I'm my kids' mom and no one else can be. I'm the breadwinner in my
family and everyone is also on my benefits. It was imperative that I
keep my job and do well at my job so I could continue to take care of
them. I started chemotherapy right away because, on paper, I was
literally dying. The kids had to see me lose all of my hair and be
really tired. That's when I started researching what else I could do in
terms of integrative therapy to help me manage the side effects of the
chemo in order to still work, be active and take care of my kids the
same way I always had.
Now, my husband is in recovery and after 1 year of chemotherapy, my
tumors have shrunk to the point where they're a microscopic size so you
can't see them on a scan... also known as ``no evidence of disease''.
I'm still working, taking care of the kids and involved in their school
activities. I want to soak in every waking second with my family.
I'm not giving up anytime soon.
Through my advocacy, I have tried to help bring more attention to
metastatic breast cancer, the need for more research funding and
investment towards metastatic breast cancer. I now serve as Board
President of METAvivor and work alongside others to push this important
work forward. 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 $18 million but we need more...stage IV
metastatic cancer needs more research.
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.
about seer modernization funding
As the saying goes, what gets measured, gets done. Currently,
cancer registries do not capture data on metastatic recurrence or
metastatic progression. There are many opportunities though to properly
incorporate critical metastatic cancer information into cancer
registries moving forward, including squeezing more out of current
registry data, linking registries to data resources that can inform
about recurrence or progression, and build the infrastructure necessary
to systematically incorporate recurrence information into registries.
For example, NCI is working to enhance reporting through pathology,
radiology, and hospitals while several research teams are exploring
algorithms that use administrative data to identify recurrence events.
Currently these efforts are concentrated in areas in which information
infrastructure exists to support them and are not yet nationally
scalable. A key emerging conclusion is that there would be a tremendous
value in ``A Big Count'' of breast cancer metastases on an ongoing
basis. This would be achievable if States would develop scalable
processes and invest the time and resources to do the counting and
gather the data. This could incorporate the utilization of innovative
tools developed by NCI or could be complementary to those efforts.
The community asks Congress to establish a $5 million pilot program
administered by CDC that can provide grants to a few meritorious States
to develop and test local solutions to directly incorporate metastatic
breast cancer recurrence and progression into current cancer
surveillance activities. This would provide a handful of multi-year
cooperative agreements to stakeholders at approximately $250,000
annually. This modest investment would facilitate:
--The development of local information infrastructures to routinely
count metastatic events at and after a cancer diagnosis;
--The creation of possibly the best MBC database in existence that
researchers will want to access and will likely cite for
decades to come;
--The ability to generate survival curves capturing the time to
recurrence or metastasis after diagnosis overall and within
different population subgroups;
--Key collaborations with NIH and CDC, including recommendations and
best practices to advance systematic incorporation of this data
moving forward.
[This statement was submitted by Jamil Rivers, Board Chair,
METAvivor.]
______
Prepared Statement of Michelson Center for Public Policy
The Michelson Center for Public Policy (MCPP) thanks the
subcommittee for its long-standing bipartisan leadership in support of
the National Institutes of Health (NIH). Robust support for science and
innovation is critical if we are to advance public health, sustain U.S.
leadership in medical research, and remain competitive in today's
innovation economy.
In year two of the COVID-19 pandemic, not only do lives continue to
be lost but the U.S. economy continues to suffer as well. It is
estimated that the COVID-19 pandemic will cost the U.S. economy more
than $16 trillion.\1\ The NIH's fiscal year (FY) 2022 budget was less
than 0.3 percent of that. The NIH is the world's largest funder of
medical research and the basic, clinical, and translational research
that it funds is the very fuel that feeds the American engine of
discovery and drives innovation in pharmaceuticals and biotechnology.
More importantly, NIH research saves lives and improves wellbeing for
millions worldwide. Now is the time to vaccinate the economy and
bolster our ability to respond to the emerging public health threats of
tomorrow by continuing to invest heavily in biomedical research with
transformative potential. MCPP urges the subcommittee to provide NIH
with $100 billion in base funding in FY 2023.
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\1\ https://news.harvard.edu/gazette/story/2020/11/what-might-
covid-cost-the-u-s-experts-eye-16-trillion/.
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The Michelson Center for Public Policy (MCPP) is a 501(c)(4) social
welfare organization that propels legislative change through meaningful
collaboration with elected officials, government agencies, and civic
leaders to achieve positive outcomes in medical research, education,
equity, and animal welfare. MCPP is an affiliated but separate
organization from the Michelson Philanthropies network of foundations
(Michelson 20MM Foundation, Michelson Found Animals Foundation, and
Michelson Medical Research Foundation) and complements the Michelson
Philanthropies' thought leadership and expertise with bold and
effective advocacy. MCPP's founder and co-chair is physician, inventor,
and philanthropist Gary Michelson, M.D. He is committed to using his
platform to advocate for robust investment in biomedical research,
disruptive innovation that can deliver more treatments and cures, and
support for the next generation of researchers.
Through the Michelson Medical Research Foundation, Dr. Michelson
makes grants to support high-quality, cutting-edge medical research
because a single breakthrough could benefit the lives and health of
hundreds of millions. But philanthropy cannot do it alone. Truly
transformative medical advances are seeded by robust investment in the
NIH and these investments have exponential returns for the economy,
jobs, tax revenues and--most importantly--humankind.
MCPP is thankful for the strong bipartisan support that the
subcommittee leaders, Chairwoman Patty Murray and Ranking Member Roy
Blunt, have shown in providing the NIH with its seventh consecutive
funding increase during this time of constrained budgets. These
increases have helped the NIH regain ground from the years of largely
flat funding in inflation-adjusted dollars. However, we must do more.
The Biden Administration has proposed to fund the NIH at $49
billion in FY 2023, which includes $4 billion for the Advanced Research
Projects Agency for Health (ARPA-H). This is a good start, but it is
not nearly enough. This is precisely the right time to be bold and go
bigger. We cannot afford to be modest in our efforts. No one deserves
to fall ill and die, or to helplessly watch as their child, parent or
spouse suffers because we failed to do the work right now to save them.
We must dramatically increase NIH's base funding, so that a lack of
funding is not the reason why patients go untreated and diseases remain
a threat to public health.
The COVID-19 pandemic has shown that the NIH cannot only rely on
incremental annual increases to its base budget to meet the next public
health challenge. A fraction of the resources put into combating the
pandemic should have been invested in the NIH years ago. With impacts
like $16 trillion from one pandemic, we need more than inflationary
increases to NIH each year to keep pace and inoculate the country
against the next public health crisis.
Not only is NIH research essential to advancing health and national
security, it also plays a key economic role. Funds provided to NIH are
not costs, but instead generate remarkable rates of economic return and
even greater returns on our health and wellbeing. In FY 2021, NIH
invested $35.73 billion, over 80 percent of its budget, in the
biomedical research industry across the country. This investment
supported more than 552,444 jobs nationwide and generated nearly $94.18
billion in economic activity across the U.S.\2\ Just one NIH-funded
medical research program, The Human Genome Project, directly generated
more than a trillion dollars for the U.S. economy-a 178-fold return on
investment--and has paid for itself many times over in industry tax
revenues returned to the government.\3\
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\2\ NIH's Role in Sustaining the U.S. Economy--2022 Update, https:/
/unitedformedicalresearch.org/wp-content/uploads/2022/03/UMR_NIHs-Role-
in-Sustaining-the-U.S.-Economy-FY21.pdf.
\3\ https://www.nih.gov/about-nih/what-we-do/impact-nih-research/
our-society.
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MCPP is enthusiastic about the newly established Advanced Research
Projects Agency for Health (ARPA-H) and the potential it has to drive
innovation and accelerate the development of innovative therapeutics,
treatments, and cures for chronic conditions such as cancer, diabetes,
and Alzheimer's Disease. Too often, research supported by the NIH
results in incremental advancements and not the transformative
scientific breakthroughs that only come from robust investment in high-
risk high-reward research. The research at ARPA-H must complement the
work at the NIH, and not duplicate current research efforts at the
NIH's Institutes and Centers. To have the largest impact on biomedical
research, medicine, and healthcare, ARPA-H should focus on breakthrough
technologies that are multi-disciplinary and operate across disease
groups as well as focus on questions and topics that do not fit well
within the confines of traditional biomedical research but may have
clinical or commercial applications, something the NIH has historically
been unable to do.
In addition, funding for ARPA-H should supplement, not supplant
NIH's base budget funding. For ARPA-H to yield successful results with
the most promise for transformative advances, NIH must receive adequate
base funding to ensure breakthroughs in the same basic research that
makes these transformative advances possible.
A crucial component of ensuring that the NIH is equipped to meet
the health challenges of the future is supporting the next generation
of scientists. Early career researchers in the biomedical sciences face
many struggles as they move toward independence. Lack of independent
funding opportunities and tenure-track faculty positions place many
early career researchers in a cycle of training positions that may
hinder growth, innovation, and scientific independence. In addition,
the NIH funding ecosystem is harmfully ``hypercompetitive.'' In FY
2021, only one out of every five applicants was ultimately awarded NIH
funding,\4\ and the resulting grant was almost always less than the
amount requested to effectively perform the research. This system
especially disadvantages early career investigators, squandering the
potential of scientists with groundbreaking and innovative ideas.\5\
Furthermore, among early career researchers, women, parents, and those
from underrepresented backgrounds in STEM bear a disproportionate
amount of this burden. MCPP urges the subcommittee to build NIH's
ability to devote more of its annual budget to programs that support
early career researchers, with the goal of attaining 10 percent of the
agency's overall budget invested in the most promising young
investigators conducting highly innovative research with truly
transformative potential.
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\4\ https://report.nih.gov/nihdatabook/report/20.
\5\ https://nexus.od.nih.gov/all/2018/05/04/the-issue-that-keeps-
us-awake-at-night/.
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MCPP thanks the subcommittee for its important work dedicated to
ensuring the health and security of the Nation, and we appreciate this
opportunity to urge the subcommittee to continue the success of NIH by
providing $100 billion in FY 2023. This is the minimum amount needed to
transform our Nation's investment in life-saving medical research,
enhance NIH's ability to support highly innovative and groundbreaking
research, and expand support for young investigators.
We have a once-in-a-lifetime opportunity to pave the way for future
medical advances to benefit humankind. Let's seize it.
______
Prepared Statement of the Morehouse School of Medicine
summary of fiscal year 2023 recommendations
_______________________________________________________________________
Health Resources and Services Administration:
--$1.51 billion for the Health Resources and Services Administration
(HRSA) Title VII health professions and Title VIII nursing
workforce development programs.
--$47.42 million for HRSA's Minority Centers of Excellence
--$47.95 million for HRSA's Health Careers Opportunity Program.
--$2 million for HRSA's Minority Faculty Loan Repayment Program.
--$67 million for HRSA's Scholarships for Disadvantaged Students
(SDS)
--$67 million for HRSA's Area Health Education Center (AHEC)
Program
Centers for Disease Control and Prevention
--$74 million for the Racial and Ethnic Approaches to Community
Health (REACH) Program
National Institutes of Health
--$49 billion for the National Institutes of Health
--$1 billion for the National Institute on Minority Health and
Health Disparities (NIMHD).
-- $300 million for the Research Centers at Minority Institutions
(RCMI)
--$200 million in new, annual research funding dedicated
specifically targeted at enabling historically black health
professions schools to support research that reverses
health status disparities among minority Americans.
--$100 million for NIH's Extramural Research Facilities program
--$50 million to reinvigorate the NIMHD's Research Endowment
Program (REP)
Office of the Secretary
--$72 million for the Office of Minority Health at the Department of
Health and Human Services.
--$5 billion in new funding designated for Historically Black Health
Professions Institutions for the improvement and development of
health care infrastructure.
Department of Education
--$100 million for the Strengthening Historically Black Graduate
Institutions (HBGI) Program.
Community Project Funding/Congressional Directed Spending Request
(HRSA)
--$950,000 request to continue the development of a Research and
Academic Building on MSM's main campus ($10 million total cost)
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, and distinguished members
of the subcommittee, thank you for the opportunity to submit testimony
and thank you for your leadership in addressing challenges facing the
health workforce, health disparities, and medically underserved
communities. I am Dr. Valerie Montgomery Rice, President, and Dean of
Morehouse School of Medicine (MSM).
Morehouse School of Medicine was founded to address the disparities
in health status and health care among vulnerable populations. Central
to our mission is increasing the diversity and cultural competence of
the health professional scientific workforce, addressing the primary
health care, mental health and public health needs of underserved
populations, as well as engaging in innovative research and developing
patient-centered programs aimed at advancing health equity in Georgia
and across the Nation. This is a mission that we, and our Historically
Black Colleges and Universities (HBCU) medical school colleagues, take
seriously.
We are proud to be a one of the four institutions that comprise our
Nation's HBCU medical schools. While each of our esteemed institutions
brings something slightly different to the table, we all share one
common goal: helping Americans achieve their optimal level of health.
HBCU medical schools are distinguishable from our other institutional
colleagues because health equity is at the core of everything we do.
From the research opportunities that we engage in, to our
prioritization of clinical continuity for underserved communities, to
our commitment to providing access to trusted medical services for
those who need it most, we have always existed to protect the most
vulnerable amongst us.
We have learned valuable lessons over the past 2 years, and
continue to respond the best we can to the pandemic, but we know that
there is more work to be done. The country has now seen what MSM and
other Historically Black Graduate Institutions (HBGIs) and HBCUs know
and work towards everyday: the pitfalls and shortcomings of minority
health. Our funding recommendations are robust and necessary given the
discussion concerning the devastating effect of the pandemic on people
of color and the need to address this effect for any future pandemic.
To be as clear we can be, there must be more robust investment on
minority health and disparities. To achieve this we know that it will
require the steadfast leadership of health equity champions. We stand
ready to work with you and your colleagues to facilitate these efforts.
Health disparities across racial and ethnic groups in the U. S.
have been well documented over the last several decades and have
remained remarkably persistent in spite of the changes in many facets
of the society over that period. Moreover, the benefits of increasing
diversity in the health professions to reduce such disparities have
been studied at length, are based on empirical data, and are well
understood by the medical community. Examples of these benefits
include:
--Minority physicians are more likely to practice in medically
underserved areas and care for patients regardless of their
ability to pay.
--Minority physicians are more likely to choose primary care
practices.
--Evidence suggests that improving cross-cultural communication
between doctors and patients and providing patients with access
to a diverse group of doctors improve adherence, satisfaction
and health outcomes.
--There is evidence that the intellectual, cultural sensitivity,
competency, and civic development of students is enhanced by
learning in a diverse educational environment.
--A diverse health workforce encourages a greater number of
minorities to enroll in clinical trials designed to alleviate
health disparities.
There is little left to discover or dispute with respect to the
benefits of achieving greater racial and ethnic diversity of the
Nation's health professionals--the attention has once again shifted to
identifying the most effective and sustainable methods to do so. While
there are many national campaigns underway to increase diversity in all
medical and health professions schools particularly during this period
of enrollment growth, it is imperative that we further recognize and
leverage the public value of Historically Black Health Professions
Schools.
The daunting news that Blacks Americans in the U.S. are
disproportionately suffering and dying from COVID-19 unfortunately was
not a tremendous surprise to those of us who regularly monitor and
understand health status disparities in this nation. There are well-
known health status challenges faced daily by Black Americans and
minority health care providers, it also represents a surrogate for the
glaring lack of health infrastructure in medically under-served
communities. At MSM and other HBGI institutions, we have long been and
remain committed to addressing these very same disparities in whatever
way that we can, with an eye first and foremost towards the communities
with the greatest need across our country.
Ironically, as a result of their mission focus the financial models
of historically black health professions schools are uniquely
disadvantaged compared to most of their peer institutions. Unlike
subspecialty-oriented, research-intensive institutions--with higher
margin clinical services, an integrated hospital system, substantial
research enterprises, sizeable endowments, and a critical mass of
wealthy donors--these institutions are faced with an unprecedented set
of adverse factors that challenge their financial viability.
Consequently, they are disproportionately dependent on the various
Federal programs that support their core purpose.
Specifically, these programs include: the Title VII Health
Professions Training Programs administered by the Health Resources and
Services Administration (HRSA) of the Department of Health and Human
Services (HHS); the Research Centers at Minority Institutions (RCMI),
the Extramural Research Facilities; the Research Endowment; and Centers
of Excellence programs administered the National Institutes of Health's
National Institute on Minority Health and Health Disparities; and the
Historically Black Graduate Institution (HBGI) program administered by
the Office of Postsecondary Education of the U.S. Department of
Education (DOE).
President Biden recently signed the John Lewis NIMHD Research
Endowment Revitalization Act to revitalize this important initiative,
and it is our expectation that NIMHD will act swiftly to reinvigorate
the research endowment program so minority-serving institutions can
participate in this competitive opportunity to build their research
endowments in a manner consistent with the statutory goal of assisting
them in achieving a research endowment that is comparable to the
endowments of other schools in their health professions discipline. The
NIMHD Research Endowment Program (REP) allows academic institutions to
build research infrastructure and recruit, train, and maintain a
diverse faculty and student body. Robust funding would allow active and
former NIMHD Centers of Excellence to continue their historic focus on
research to close the gap between the burden of illness and premature
mortality experienced more commonly by communities of color, as well as
other medically underserved populations. It would also help improve
access to grants to fund research projects, as well as hire staff and
provide scholarships for students who come from underserved
communities. To ensure successful implementation, we are asking for the
Committee to allocate robust funding to NIMHD for this program.
In addition to the recommendations referenced above, MSM has
submitted a community project funding/congressionally directed spending
request for continuing to develop a new academic and research facility
that will provide critical support in the Institution's mission to
improve and diversify the healthcare workforce. The recent growth in
the size and diversity of the student body has not only made it
necessary to train more healthcare professionals committed to
underserved communities, but it also requires expanded space and
resources on campus. More classrooms, lecture spaces, learning
communities, research laboratories, and common spaces for knowledge
sharing are all needed to meet the needs of a growing student body.
Madam Chair, unfortunately, over the past several years funding for
diversity-focused programs has deteriorated in varying degrees. Absent
a monumental overall investment the financial position and academic
viability of historically black health professions schools will
deteriorate rapidly. The front loaded investment in health professions
training programs, graduate programs in biomedical sciences and public,
and safety net providers is more cost effective than absorbing
uncompensated care originating from minority and underserved
communities. Now is the time for targeted investments in historically
black health professions schools to ensure a steady pipeline of
minority healthcare providers, biomedical scientists, and other health
practitioners prepared to support and advance the delivery of high
quality, culturally appropriate, evidence-based health care. Thank you
all again for the opportunity to share the priorities of the Morehouse
School of Medicine.
[This statement was submitted by Valerie Montgomery Rice, M.D.,
President and Dean, Morehouse School of Medicine.]
______
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 (LHHS) Appropriations subcommittee regarding our
request for fiscal year 2023 report language for paid work-based
learning funded at $5,000,000 at the Department of Labor's Employment
and Training Administration.
NAF's educational design promotes open enrollment in our career
academies and allows students of all backgrounds and capabilities to
participate. The design is replicable, sustainable, and cost-effective,
and because it integrates within public schools, supports lasting
systemic reform and equity nationwide. NAF transforms the learning
environment to include STEM-infused, industry-specific curricula and
work-based learning experiences. NAF serves more than 120,000 high
school students in 35 States and territories. NAF is focused on helping
to eliminate systemic, educational, and professional barriers,
especially those faced by students of color.
Public secondary education institutions play a critical role in
preparing youth for future success through initiatives like career and
technical education programs, access to local colleges, and work-based
learning opportunities with employers. As a principal public
institution that teens go through before becoming adults, the secondary
education system plays a significant role in setting up the next
generation for success in the workforce. Work-based learning programs
ensure a connection between schools and the working world, whether it's
preparing students to enter existing jobs, encouraging entrepreneurial
endeavors, or serving as a foundation for career opportunities after
post-secondary education.
Research shows that participation in work-based learning during
high school has a positive impact on students, including completing
high school, securing higher-quality jobs, and boosting equity and
economic opportunity.\1\ Work-based learning is the continuum of
activities both in classroom learning and the workplace setting that
leads students to gain real world experience. Work-based learning has
proven impacts on earnings, job quality and stability and is a critical
lever in addressing systemic racial and economic inequities.
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\1\ Sun, J., & Spinney, S. (2017). Transforming the American High
School Experience: NAF's Cohort Graduation Rates from 2011-2015. ICF
International.
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Students in NAF academies are more likely to graduate on-time than
their peers who are not involved with career academies. NAF has an
overall positive effect on all students but is particularly impactful
for those at-risk of not graduating-with full, 4-year program
participation in a high-quality career academy, these students were 10
percentage points more likely to graduate on-time than their non-NAF
counterparts. Black and Hispanic students attending NAF academies also
are shown to have higher high school graduation rates.ii
Students who graduated from a career academy amassed 11 percent
more total earnings each year, over the 8 years following high school
than those who did not attend a career academy. Youth who drop out of
high school can expect to earn $10,000 less annually compared to high
school graduates.\2,3\ In 2020, NAF academies reported 99 percent of
the seniors graduated with 87 percent of graduates planning to go to
college.
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\2\ Kemple, J. J., & Willner, C. J. (2008). Career Academies Long-
Term Impacts on Labor Market Outcomes,. mdrc.
\3\ ICF. (2017). Transforming the American High School Experience:
NAF's Cohort's Graduation Rates from 2011-2015, 2017.
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Work-based learning helps students to build relationships, sharpen
essential skills and expand their networks beyond their immediate
communities. The relationships with adults nurtured through work-based
learning opportunities are also shown to be long-lasting, positively
benefiting students up to a decade later. Eighty percent of jobs are
filled through personal and professional connections.\4\ Young people
deserve an education that builds workforce essential skills, helps them
create social capital, and connects them to opportunity.
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\4\ Fisher, J. F. (2020, February 14). How to get a job often comes
down to one elite personal asset, and many people still don't realize
it. Retrieved from CNBC: https://www.cnbc.com/2019/12/27/how-to-get-a-
job-often-comes-down-to-one-elite-personal-asset.html.
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The most effective work-based learning experiences provide
sustained and meaningful interaction between a student and employer
partner. This would include career preparation activities such as
internships, apprenticeships, and mentorship programs. While less
intensive activities--such as guest speakers, mock interviews, and
worksite tours--are important to help students with career awareness
and exploration and to introduce employers to the concept of work-based
learning, the more time- and resource-intensive activities like
internships are where students gain the most insight into the working
world and able to hone their professional skills.
When created with intentional student learning outcomes and
ownership by all stakeholders, work-based learning can shape students'
aspirational opportunities by helping them explore potential careers of
interest; build student skills; and help level the playing field by
exposing students to networking opportunities to build a diverse
professional network, which research indicates is particularly
transformative for students of color and those from low-income
households.
While funding to schools for career and technical education is
provided through the Perkins Career and Technical Education Act, this
funding cannot be used to pay students for their work. However, paid
internships are vital to closing the equity gap. Moreover,
opportunities to intern in the nonprofit and government sectors can
foster interest in public service careers among financially
disadvantaged students. This potential for increased awareness of civic
affairs would represent an important step toward a more engaged and
inclusive democracy.
To build upon Congress' previous support for work-based learning
coordinators at the secondary education level, NAF urges the
subcommittee to support and advocate for the inclusion of the following
report language in the fiscal year 2023 Appropriations bill, ``The
Committee includes $5,000,000 to provide grants to no more than three
national, non-profit education organizations, which work
collaboratively with Title I public high schools to facilitate paid
internships for enrolled high school students completing secondary
career and technical education in information technology, finance,
health sciences, hospitality, and engineering. Ninety percent of funds
shall be used by grantees to support paid internships with local
employers, which shall include, but not be limited to, non-profit and
government agencies. Preference shall be given to organizations with
existing internship preparation programming and internship assessment
tools in order to provide an evaluation of outcomes to the
Department.''
conclusion
Work-based learning is advantageous for employers and communities.
It is a proven way to grow the talent pipeline and help students be
ready for the workforce.\5\ By partnering with high schools to provide
work-based learning opportunities to students, employers help develop a
talent pipeline aligned with their workforce needs. Employers also gain
the opportunity to observe prospective employees in action before
making the investment to hire them.\6\ The nation must invest in work-
based learning, so workers have the skills they need to succeed; and
employers have the diverse talent they need to thrive. NAF appreciates
the opportunity to share its expertise; and thanks you for your
consideration of this important request.
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\5\ Ross, M., Moore, K. A., Murphy, K., Bateman, N., DeMand, A., &
Sacks, V. (2018, October). Pathways to high-quality jobs for young
adults. Retrieved from Brookings: https://www.brookings.edu/research/
pathways-to-high-quality-jobs-for-young-adults/.
\6\ Benefits of Work-Based Learning. (n.d.). Retrieved from JFF:
https://www.jff.org/what-we-do/impact-stories/center-for-
apprenticeship-and-work-based-learning/benefits-work-basedlearning/
#: :text=Jobseekers%20also%20see%20work%2Dbased,of%20%20a%20skilled%regi
onal%20 workforce.
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______
Prepared Statement of the National Alliance for Eye and Vision Research
Serving as ``Friends of the National Eye Institute,'' the National
Alliance for Eye and Vision Research (NAEVR) is a 501(c)4 non-profit
advocacy coalition comprised of over 55 organizations, research
institutions, and companies involved in and supportive of eye and
vision research. NAEVR is grateful to Congress, especially the House
and Senate Labor, Health, and Human Services (LHHS) Appropriations
subcommittees, for the strong bipartisan support for NIH funding
increases over the past 7 years. The $14.88 billion increase during
that timeframe has helped the agency, and researchers, regain lost
ground after a decade of effectively flat budgets.
support nih base funding of at least $49 billion
The past increased investments in NIH have continued to improve our
understanding of fundamental life and health sciences, advance research
across conditions, and prepare the Nation to combat existing and future
health threats, including COVID-19. To maintain and build on this
momentum, NAEVR strongly supports a funding level of at least $49
billion for the NIH's base program level, a $4 billion increase over
the comparable FY22 enacted level, with an emphasis that any additional
funds for the Advanced Research Projects Agency for Health (ARPA-H)
supplement, rather than supplant, this core investment in NIH. This
increase would help keep NIH's base budget ahead of the biomedical
research and development price index (BRDPI) and provide for inflation
plus growth to support promising science across the Institutes and
Centers.
NAEVR continues to support ARPA-H funding and supports any funding
above the $1 billion allocated in FY22 to be supplemental to the NIH
base budget as referenced above. NAEVR is further interested in
identifying and supporting ways that vision researchers can engage in
advanced research projects through ARPA-H given how vital vision
researchers have proven to be across advancements in multiple
conditions.
NAEVR is also supportive of the proposed use of mandatory funding
to supplement NIH's base funding to improve pandemic response and
readiness. COVID-19 has continued to impact research and our society
and focusing research to address these issues is vital.
support nei funding of $950 million
NAEVR also urges Congress to fund the National Eye Institute at
$950 million, an $86.1 million increase over the comparable FY22
enacted level. Vision researchers continue to perform extremely well in
cross NIH initiatives because of how central the eye is to not only
vision, but it provides one of the best windows into the brain and
brain function. While funding for NEI has increased along with other
NIH institutes, the FY22 funding level continues to remain below 2012
inflation-adjusted dollars.
NEI will play an even greater role in research that can stem the
tide of the looming vision epidemic in the United States. The Centers
for Disease Control (CDC) estimates that three-in-five Americans over
40 have eye and vision problems (90 million Americans). By 2050, CDC
estimates a 72 percent increase in diabetic retinopathy, an 87 percent
increase in cataracts, a 100 percent increase in glaucoma, a 100
percent increase in macular degeneration, and a 150 percent increase in
vision impairment and blindness. Americans are facing an increasing
burden of vision impairment and eye disease due to an aging population,
the disproportionate impact risk and incidence of eye disease in fast-
growing minority populations, and comorbidities impacting vision from
numerous chronic conditions such as diabetes. With an ever-increasing
reliance on electronic communication and screen time for children and
adults, increased rates of myopia, dry eye, and eye strain are all
expected to impact future generations.
Maintaining the momentum of vision research and increasing the
investment in vision research is vital to not only vision health but
also to Americans' independence and quality of life. In a 2014
Research!America and Alliance for Vision Research (AEVR) survey of over
2,000 adults, vision loss was rated as potentially having the greatest
effect on their day-to-day life, greater than the loss of limb, memory,
hearing, and speech. Maintaining the momentum of vision research is
vital to vision health, as well as to overall health and quality of
life. Since the United States 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.
nei-funded research saves sight and restores vision
The past Federal investment in vision research has led to major
advances in the prevention of vision loss as well as the restoration of
vision.
Audacious Goals Initiative: The NEI has been at the forefront of
regenerative medicine with its Audacious Goals Initiative (AGI), which
launched in 2013 with the goal of restoring vision. Engaging a broad
constituency of scientists from the vision community and numerous other
disciplines, 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. 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.
Retinal Diseases: The NEI has been at the forefront of research
into retinal diseases. NEI-funded researchers helped show that a
protein called Vascular Endothelial Growth Factor (VEGF) stimulates
abnormal blood vessel growth that occurs in the advanced stages of the
``wet'' form of Age-related Macular Degeneration (AMD) and Diabetic
Retinopathy. Food and Drug Administration (FDA)-approved anti-VEGF drug
therapies that slow the development of blood vessels in the eye delay
vision loss and may improve vision for patients. The NEI has funded
comparison trials of anti-VEGF drugs to provide eye care professionals
and patients with the information they need to choose the best
treatment options.
With respect to the ``dry'' form of AMD, known as geographic
atrophy and the leading cause of vision loss among individuals aged 65
and older, 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. 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.
Genetics/Genomics: The NEI has been at the forefront of genetics/
genomics and gene therapy approaches to various vision disorders-both
common and rare. The causes of AMD and glaucoma remain elusive-although
most cases are not inherited, genetics does play a role. While NEI-
funded researchers have identified many genetic risk factors for AMD
and glaucoma, further study of these genes is helping to elucidate the
biology of these disease and holds promise for improved therapies.
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.
Front-of-Eye Research: The NEI has launched an Anterior Segment
Initiative (ASI) to capitalize on research opportunities at the front
of the eye. The ASI is addressing clinically significant, quality-of-
life problems such as ocular pain and Dry Eye Disease (DED), especially
in terms of pain and discomfort sensations, as well as disruptions in
the tearing process. Using multi-disciplinary approaches, the ASI plans
to elucidate relevant anterior segment innervation pathways that
contribute to normal or abnormal functioning of the neural circuits
related to the ocular surface.
economic burden of eye and vision conditions
Vision disorders represent the fifth-highest direct medical cost in
the United States. In a 2014 Prevent Blindness study, it was reported
that vision disorders will cost an estimated $182.5 billion in 2022--
only less than heart disease, cancers, emotional disorders, and
pulmonary conditions. Left unaddressed, and with the looming vision
epidemic, this is projected to grow to an inflation-adjusted $717
billion by 2050. The U.S. is spending over $545 per American on the
treatment of vision disorders every year while only spending $2.50 per
American on research that can improve outcomes. [http://
costofvision.preventblindness.org/]
NEI's breakthrough research is a cost-effective investment that has
led to treatments and therapies that may delay, save, and prevent
health expenditures. It can also increase productivity, help
individuals maintain their independence, and improve their quality of
life as vision loss is associated with increased depression and
accelerated mortality.
summary
NAEVR supports the efforts of Congress to provide an eighth
consecutive year of increases in the base funding for NIH. This funding
is vital to building on the momentum of existing research and NAEVR is
confident a funding level of at least $49 billion will provide the
necessary increase in FY23 to continue this growth. Inflation plus
growth investment for the National Institutes of Health (NIH) and
specifically the National Eye Institute (NEI), is vital to ensure we do
not fall short of the Institute's ability to respond to the research
needs of today to improve the outcomes of patients in the future.
NAEVR supports the NEI and believes that a funding level of $950
million would reflect the urgent need to address eye and vision
research in the United States. This funding would allow NEI to support
researchers to identify new treatments, therapies, and interventions
and address the future crisis in vision care as Americans age and more
Americans rely on increased screen time to remain productive.
NAEVR thanks the LHHS Appropriations subcommittee for the
opportunity to submit this written testimony, especially as it
continues to grapple with the multitude of short and long-term
challenges exacerbated by the COVID-19 pandemic.
For more information, or if the subcommittee has additional
questions, please contact Dan Ignaszewski, Executive Director of NAEVR
at [email protected]. Additional information can also be found on
NAEVR's website at www.eyeresearch.org. Thank you again for your time
and consideration,
Sincerely.
[This statement was submitted by Dan Ignaszewski, Executive
Director, National Alliance for Eye and Vision Research.]
______
Prepared Statement of the National Alliance for PANS/PANDAS Action
Madam Chairwoman,
It is an honor to provide testimony to the subcommittee on behalf
of thousands of children and young adults across the country who have
had their lives turned upside down by Pediatric Acute-Onset
Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune
Neuropsychiatric Disorders Associated with Streptococcus (PANDAS),
which are Childhood Post-Infectious Neuroimmune Disorders (CPINDs). We
are requesting support of report language and $5,000,000 in program
funding for PANS and PANDAS in the fiscal year 2023 Labor, Health And
Human Services, Education and Related Agencies bill.
First, I would like to thank the Committee for the strong language
included in past Committee reports. It has been effective and has
brought attention to PANS and PANDAS. However, it is now time to take
decisive action to direct NIH and other Federal agencies to increase
funding for investigations into these conditions.
I am the parent of three children with PANDAS, a founding member of
the National Alliance for PANS/PANDAS Action (NAPPA), and co-founder of
the Mending Minds Foundation. I helped start these organizations to
drive much-needed research and awareness.
PANS and PANDAS are neuroimmune disorders caused by a misdirected
immune response following an infection. In short, antibodies and immune
cells that would normally fight infection ``go rogue'' and attack the
brain. The resulting inflammatory process leads to debilitating
neurological and behavioral changes in young people.
PANS and PANDAS cause life-altering and horrific symptoms. The
first sign is dramatic deterioration in one or more areas of
functioning including cognitive, motor, sensory, executive, social, and
emotional. These disorders have an alarming impact on mood and
personality, rendering an adolescent who thrived in school suddenly
unable to leave the house, or an exuberant healthy child intensely
phobic and anorexic. Restrictive eating, severely impulsive, self-
harming behavior, and suicidal ideation may necessitate
hospitalization. Children's lives are in danger.
My family's story illustrates the devastating reality posed by
these diagnoses. My two older children presented with primary mental
health and neurological symptoms and, as a result, the underlying
immune dysfunction was missed. Psychotropic medications did not
alleviate these symptoms, and my children continued to deteriorate. We
finally arrived at the true cause of their illness: undiagnosed,
untreated strep infection, the same bacteria that causes a sore throat.
When they received medication to address this underlying infection,
they began to respond and improve in ways that had not been possible
with mental health treatment alone.
Like many children with PANS and PANDAS, their identification and
treatment was delayed due to ?limited awareness and clinical
understanding. Unfortunately, lack of medical care to address the
underlying infectious, inflammatory, and/or immune process resulted in
symptom escalation and prolonged illness. The risk of misdiagnosis is
greater in communities already facing barriers due to income and racial
disparities in health care.
My children also exemplify the contrast between delayed and early
identification. My oldest two have suffered more serious complications
and required more extensive treatment. They have lost critical time
between the onset of their symptoms and medical intervention that they
cannot completely regain. My youngest was treated successfully when her
symptoms began, and she recovered quickly. Catching this illness early
is the best path to full and complete recovery. When left undiagnosed
and untreated, the condition may worsen and lead to chronic illness in
young adulthood and beyond.
Caring for youth in a sustained crisis places a heavy financial
burden on families, health care systems, and schools. Parents endure
lost wages and out-of-pocket medical costs. Insurers incur immense
costs due to repeated emergency room visits, inpatient medical and
psychiatric stays, and years of pharmacological and behavioral
therapies for symptom management.
Educational systems face an enormous financial burden when
providing special education services for children who need increased
academic support, one-to-one aides, home tutoring, or out-of-district
placements. Shortening the time to identification and appropriate
medical treatment would significantly minimize these societal costs.
In the past 2 years, COVID-19 has brought increased recognition of
the irrefutable link between infections and delayed, but highly
disruptive, immune and inflammatory reactions in the body and brain,
including post-infectious psychosis, depression, and anxiety. Medical
illness triggering psychiatric symptoms is not a new phenomenon and
holds the key to understanding the connection between the body's
response to infection and mental illness.
The youth mental health crisis, which arose out of the global
pandemic, is staggering. Suicide is a leading cause of death in young
people beginning at age 10. Children and adolescents with PANS and
PANDAS have a high degree of impulsivity and often have intrusive
thoughts of self-harm and of killing themselves. Tragically, many young
people have lost their lives from PANS and PANDAS as a result of
impulsive acts causing self-injury or persistent thoughts of death,
including Louisa, the 13-year-old daughter of one of NAPPA's founding
members.
Prior to the onset of PANDAS, Louisa flourished socially and
academically-a straight A student with much promise who aspired to
become a doctor. The day that Louisa became ill was her last day at
school. She was never able to return and suffered terribly for two and
a half years until her untimely death. Her parents donated Louisa's
brain to Georgetown University's brain bank dedicated to PANS/PANDAS
research. Growing this critical research and ensuring that all children
are routinely screened for PANS and PANDAS will save lives.
Researchers can develop better screening tools and biomarkers to
identify youth with underlying medical illnesses. Larger and longer-
term studies can lead to more effective individualized treatment.
Across the U.S., dedicated scientists and clinicians are doing
groundbreaking work that cannot continue without funding.
They cannot achieve the breakthroughs our children so desperately
need alone. A $5 million commitment from Congress and NIH to dedicate
funding to PANS and PANDAS will promote the development and application
of diagnostic tools and effective interventions early in the course of
illness, when affected youth can recover quickly and return to thriving
in their homes, schools, and communities.
The ability of children suffering from PANS and PANDAS to regain
their quality of life with appropriate intervention is exemplified by
the story of Tim:
Tim was a happy, healthy 10-year-old, thriving in school and
engaged in many extracurricular activities. He was an avid
reader and a valued contributor on his chess, soccer, and
tennis teams. He was honored as an exemplary school community
member. Shortly after an infection, he became so riddled with
OCD that he was unable to leave his bedroom to attend school or
medical appointments, and some days he refused to eat.
He lost his reading, writing, and math skills. He was in physical
pain and could not sleep at night. When Tim suddenly began
attempting to jump off the balconies of his house and running
into traffic, his parents had to provide round the clock
supervision. This continued despite repeated trips to numerous
doctors and therapists. His family said it was as if an alien
had invaded his brain and his body. The stress took an enormous
toll on their family, including their other children. Medical
providers were baffled, had a 10-year-old somehow become
bipolar overnight? Thanks to the family's persistence and a
dedicated medical team familiar with PANDAS, the root cause was
finally identified. All of this mayhem stemmed from a simple
strep infection. With treatment for his underlying infection
and immune dysfunction, Tim returned to school and resumed his
activities. The crippling OCD is gone, the dark thoughts are
gone, the arthritis is gone, and the headaches are gone. He has
his life back.
We are living in complicated times when our vulnerability to
infectious diseases has never been so glaring. We turn to medicine and
science for the rapid development of tests, treatments, and vaccines to
harness the immune system in the fight against COVID-19. We must now
use those tools to improve the lives of children with PANS and PANDAS.
Funding research will be a vital next step for the health of our
country and the future of our children.
I would like to conclude by emphasizing the following points:
--Early intervention lowers the risk of chronic illness and
alleviates the heavy financial burden on families, school
systems, health care systems, and insurers.
--When left untreated, PANS and PANDAS can result in unintentional
loss of life. Directing resources to screening young people
will save lives.
--The association between neuropsychiatric illness and infections has
become even more evident because of SARS CoV-2 and provides
increasing opportunities for breakthroughs in research and
treatment.
--25 years after NIH began researching PANDAS, program funding
remains insufficient to develop diagnostic tests and to
identify more effective treatments.
--NIH research funding for PANS/PANDAS would bring much-needed
attention to these diagnoses in the medical community, thereby
aiding in early identification and treatment.
Advancing our understanding of PANS and PANDAS through a $5 million
commitment will contribute to a paradigm shift in research, medicine,
and mental health care. Such a Federal investment in scientific
research will dramatically change the lives of many young people
affected by these neuroimmune disorders.
America's youth deserve the best that our healthcare system has to
offer-not a lifetime of pain and symptom management. Your support will
help PANS and PANDAS families achieve their dream of solving this
nationwide health crisis.
[This statement was submitted by Amanda Peel Crowley, Founding
Member,
National Alliance for PANS/PANDAS Action.]
______
Prepared Statement of the National Alliance of Public Charter Schools
Madam Chair and Members of the subcommittee, I am pleased to
present the views of the National Alliance for Public Charter Schools
(the National Alliance) on the Fiscal Year (FY) 2023 appropriation for
the Charter Schools Program (CSP) and other programs administered by
the U.S. Department of Education. The National Alliance is the leading
national nonprofit advocacy organization committed to advancing the
public charter schools movement.
I would like to thank the subcommittee for maintaining support for
the CSP at a funding level of $440 million in FY 2022, as the program
helps expand educational opportunities for children and families and
drives improvements in educational outcomes nationwide. Indeed, the
importance of charter schools (supported by the CSP) in offering
choices to needy families has been demonstrated by the continued growth
in charter school enrollments during the ongoing COVID-19 pandemic. As
the subcommittee considers the budget for FY 2023, we ask that you
increase the CSP appropriation to at least $500 million.
The National Alliance also strongly supports the provision of
additional resources for Federal K-12 education programs that fund
schools more generally, including Title I Grants to Local Educational
Agencies (LEAs) and the State Grants under the Individuals with
Disabilities Education Act. We endorse the Administration's request for
increased funding for these programs, which will help public schools,
including charter schools, address the challenges they now face in
enabling students to recover from learning losses attributable to the
pandemic and to reach the outcomes we want all students to achieve.
The Operation of Charter Schools During the Pandemic
In the wake of the pandemic, charter schools acted more quickly
than district-managed schools to provide real- time virtual
instruction, made more regular contact with students and families, and
were more likely to track online attendance.\1\ Charter schools may
have also been faster to deliver remote learning tools and technology
to students, to a student population that was more likely to lack
access to internet connectivity and devices than their traditional
public school counterparts.\2\ When asked if they felt they had the
resources and support they needed to teach effectively during the
pandemic in spring 2020, 66 percent of charter school teachers said yes
compared to 61 percent of district school teachers.
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\1\ Linda Jacobson, ``Charters Were Quicker to Provide Instruction,
Regular Contact During Closures, Reports Say.'' The 74 Million, April,
2020, https://www.the74million.org/article/charters-were-quicker-to-
provide- instruction-regular-contact-during-closures-reports-say-but-
thats-also-how-they-keep-the-kids-one-expert- explains/; CREDO,
``Charter Schools' Response to the Pandemic in California, New York and
Washington State,'' Stanford University, February, 2022, https://
credo.stanford.edu/wp-content/uploads/2022/02/Charter-School-COVID-
Final.pdf (pg. 17-18).
\2\ National Center for Education Statistics, ``Impact of the
Coronavirus (COVID-19) Pandemic on Public and Private Elementary and
Secondary Education in the United States (Preliminary Data)'', U.S.
Department of Education, February, 2022, https://nces.ed.gov/pubs2022/
2022019.pdf.
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A 2020 report that we produced in partnership with the organization
Public Impact found that small charter school networks and single-site
charter schools (which together account for 65 percent of all charter
schools) were more likely than district schools to set expectations
that teachers would engage in real-time synchronous instruction, check
in regularly with students, and monitor attendance.
And what was the impact of these efforts? Charter school
enrollments grew by 7 percent in school year 2020-2021, the largest
increase in half a decade. Preliminary data for 2021-22 show that
charter enrollment continues to increase nationally. Moreover, charter
schools continue to be the only sector within the public school
universe that grew during this period. Parents clearly appreciated the
options offered by charter schools and took advantage of those options
by enrolling their children.
Charter School Enrollments, Operations, and Accomplishments
In school year 2020-2021 more than 3.6 million students enrolled in
some 7,700 charter schools, representing about 7.2 percent of total
public school enrollment. As the charter school sector has grown, it
has continued to serve students and families whose needs were not being
met by district schools and who desired additional options. The most
recent data indicate that some 60 percent of charter school students
are eligible for free or reduced-price school meals and over two-thirds
are students of color. Both of these percentages exceed those of
district schools. To reiterate, charter school enrollments have grown
in large measure because of what the schools offer to families of
historically underserved students.
Notwithstanding charter schools' growth and achievements, recent
years have seen the proliferation of a number of misconceptions about
these schools. One is that they are not public schools and represent an
attempt to ``privatize'' public education. Let's be clear: charter
schools are public schools, and open to all students. A second
misconception is that charter schools are unaccountable. To the
contrary, they are subject to public accountability requirements as set
forth in State authorizing legislation and in their individual
charters. Unlike schools in general, if they do not produce results
they will close. Further, while charter schools typically have more
flexibility than district schools (in such areas as determining
curriculum and employing staff), they are held to the same testing and
accountability requirements as other schools under the Elementary and
Secondary Education Act (ESEA).
And charter schools are delivering results. 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 attended 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.
Most recently, a 2021 meta-analysis of research on charter school
effects and competitive influence by the National Bureau of Economic
Research (NBER) highlighted trends from three decades of research. It
found that charter schools located in urban areas boost student test
scores, particularly for Black, Latinx, and low-income students; that
attending some urban charter schools increases college enrollment and
voting; and that the competitive impact of charter schools on
traditional public schools suggests a small beneficial influence on
neighboring schools' student achievement.\3\
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\3\ Cordes, Sarah A. 2018. ``In Pursuit of the Common Good: The
Spillover Effects of Charter Schools on Public School Students in New
York City.'' Education Finance and Policy 484-512. https://
www.mitpressjournals.org/doi/abs/10.1162/edfp_a_00240.
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A 2020 study from the Program on Education Policy and Governance at
Harvard University, using results from National Assessment of
Educational Progress fourth- and eighth-grade reading and math
assessments, found greater academic gains between 2015 and 2017 for
students in charter schools than for students in traditional public
schools The study found particularly significant gains for African
American and low-income students attending charter schools, they were
almost 6 months ahead of their peers in reading and math compared with
students in traditional public schools over the 12-year span of the
study. This was the first nationwide study to compare student
achievement trends over time between sectors rather than effectiveness
at a single point in time.
The Importance of the Federal Charter Schools Program
Since its creation in 1994 during the Clinton Administration, the
CSP has received bipartisan support. The program was originally
authorized to provide start-up funding for new charter schools, but it
has evolved to address additional objectives, including meeting the
needs of charter schools for adequate facilities and supporting the
expansion and replication of high-quality charter schools operated or
managed by charter management organizations.
Since the program's inception, the Congress has appropriated some
$6.8 billion for the CSP. To put that number in context, it is
equivalent to less than 2 percent of the appropriations for Title I LEA
Grants over that time. This modest investment has enabled the number of
charter schools to grow from only a handful in the early 1990s to the
7,700 or so operating today. Because States have not typically financed
the planning and initial start-up costs of their new charter schools,
it is inconceivable that the charter sector would have grown as rapidly
and successfully without this Federal investment. Nor have States and
localities provided charter schools the same facilities and facilities
funding that are available to district-operated schools; Federal
funding for the two CSP facilities programs, while not adequate, has
thus addressed a gaping unmet need.
Charter school enrollment has grown rapidly, but it has not kept up
with family demand. Surveys indicate that some 3.3 to 5 million
additional students would attend a charter school if space were
available to them. Many of those are students who currently attend
schools identified as in need of support and improvement under Title I,
that is, schools that are not meeting State performance targets. The
increase we recommend would enable the creation of charter schools to
serve more of the students and families who want them.
Regulation of the Charter Schools Program
As you may know, on March 14 of this year the Administration
published for public comment a Notice of Proposed Priorities,
Requirements, Definitions, and Selection Criteria (NPP) for the CSP.
This notice came out late in the fiscal year, jeopardizing the ability
of the Department of Education to review and respond to comments,
decide on final rules, conduct CSP competitions, and make awards before
the end of the fiscal year. It also was issued in violation of Section
4307of the ESEA, which requires stakeholder engagement prior to
rulemaking that impacts charter schools and the CSP. Because of this
poor timing and the fact that the NPP included provisions that raised
grave concerns within the charter school community, the National
Alliance has called on the Administration to put the proposed rules on
hold, conduct the FY 2022 competitions under the current rules, and use
the next year to engage with the community about what improvements are
needed in the program and how those improvements can best be
accomplished through regulation. The National Alliance is grateful that
many thousands of individuals and organizations expressed the same
concerns in their comments on the rule.
To be clear: we are not opposed to greater transparency in the
operation of the program, although we note that the transparency-
related provisions of the NPP were vague and would have led to
confusion and inconsistent implementation. Nor do we dispute the
Administration's contention that the statute requires that grantees and
subgrantees retain administrative control over their grants and
subgrants. However, the administration has put forward appropriations
language on the charter school management issue that is unclear and was
developed, like the NPP, without consultation or stakeholder input. We
believe it should be possible to work out an acceptable regulatory
solution on this issue without additional appropriations language, such
as including current guidance on contracting with for-profit entities
as in program regulations. Therefore, we do not support the proposed
language.
Further, in response to concerns about charter schools that receive
start-up support but never open, we can endorse the proposed regulation
prohibiting schools from receiving implementation funding until they
have obtained a charter and a facility, so long as such a school may
receive support for such planning and program design activities as
curriculum development, hiring and training staff, carrying out
community engagement activities, and purchasing books, other materials,
supplies, and equipment.
On the other hand, we will never support regulations that limit
charter schools to operating in communities with overcrowded schools,
give district school officials the ability to veto the opening of
charter schools, or demand that charter schools have demographically
diverse enrollments and staff even when the communities they serve are
not diverse. Again, we thank the many commenters who expressed their
opposition to these and other provisions of the NPP.
fy 2023 request
Our request for fiscal Year2023 is $500 million, a $60 million
increase. We also recommend that the appropriations act give the
Department of Education sufficient flexibility to allocate funds across
CSP programs in response to current needs of the field. $500 million
would provide sufficient funding for new grants to States and CMOs and
thus enable those entities to support the creation of new charter
schools. This would enable the expansion of high-quality schools and
reduce wait lists in order to provide high-quality educational options
to more families, particularly those in communities that have been hit
hard by the pandemic and where the learning needs are greatest. We also
request report language that would ensure that State entity grantees
have access, at the beginning of the grant period, to the full seven
percent reservation for technical assistance as provided for in the
statute.
Finally, our request would help charter schools access appropriate
facilities. Charter schools generally have not had the same access to
funding sources that support the facilities needs of other public
schools. This forces schools to scrape by in buildings not designed for
learning, use funds that should have been available for instruction to
cover facility needs, or simply not open at all. The two small
facilities programs included in the CSP-Credit Enhancement for Charter
School Facilities and the State Facilities Incentive Grants-help fill
some of this unmet need.
[This statement was submitted by Nina Rees, President and CEO,
National
Alliance of Public Charter Schools.]
______
Prepared Statement of the National Alopecia Areata Foundation
the foundation's fiscal year 2022 l-hhs appropriations recommendations
_______________________________________________________________________
--At least $49 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)
--Please provide $11 billion for the Centers for Disease Control and
Prevention (CDC).
--Please provide $6 million for the Chronic Disease Education and
Awareness Program.
_______________________________________________________________________
Chairwoman Murray, Ranking Member 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 FY 2023 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 6.9 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. 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 6.9 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
``There is a chance you could lose all your hair.'' That was the
last thing anyone ever wants to hear. I will never forget standing in
the shower in November 2015 with my hands full of hair and in complete
disbelief. Was this really happening to me? I felt as though my
identity was being ripped away from me as every strand of hair fell out
of my head. My hair was my identity. Who would I be without it? How was
I going to live like this for the rest of my life?
I lost all of my hair on my entire body including eyebrows and
eyelashes within four weeks and I was diagnosed with the autoimmune
disease called alopecia areata. For the next year, I did everything in
my power to grow my hair back from every topical cream to medicines
that compromised my immune system to weekly steroid injections into my
scalp. This was the worst pain I had ever experienced in my life but I
would do anything to grow my hair back.
Nothing was working. I had to stop as my mind, body, and soul
couldn't take it anymore.
I don't know what was worse, the treatments or the stares I would
receive out in public as everyone thought I was going through treatment
for cancer. I wanted to blend in with society so badly, but wigs were
so expensive. I refused to look at myself in the mirror because I hated
the reflection. I wore a hat everywhere I went even to bed until the
lights were turned off to take it off and I wouldn't take any pictures,
especially during the holidays because I was ashamed of my appearance.
I wanted my life back so I could be a good mom to my daughters and just
enjoy life. Alopecia areata is not just cosmetic, it takes an emotional
toll as it caused severe anxiety and depression that I continue to deal
with years later. I was very fortunate to have the unconditional
support of my parents who helped me to purchase wigs so I could feel
somewhat normal again; however, there are too many people with alopecia
areata who do not have the luxury of support that I was blessed with.
Your support would impact people's lives immensely.''
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 Nicole Friedland, President & CEO,
National Alopecia Areata Foundation.]
______
Prepared Statement of the National Area Health Education Centers
Organization
Chairwoman Murray, Ranking Member Blunt, and distinguished members
of the subcommittee, thank you for the opportunity to submit testimony
on behalf of the National AHEC Organization (NAO). I serve as the chief
executive officer of NAO with over 14 years of experience as an AHEC
Center Director from Kentucky. The NAO is the professional organization
that represents Area Health Education Centers (AHECs) across the
country. We support advances in the AHEC network to improve health by
leading the Nation in recruiting, training, and retaining members of a
diverse health workforce in rural and underserved communities. As a
member of the Health Professions and Nursing Education Coalition
(HPNEC), NAO is pleased to recommend $790 million for the health
professions training programs under Title VII and VIII of the Public
Health Service Act that are administered by the Health Resources and
Services Administration (HRSA). Of this amount, the NAO recommends
$67.00 million in fiscal year (FY) 2023 for the Area Health Education
Center program.
The national AHEC network consists of more than 300 AHEC program
offices and centers, serving over 85 percent of the counties in the
United States. With 50 years of operation, AHECs meet the current and
emerging needs of the communities they serve through robust community-
academic partnerships, with a focus on exposure, education, and
training of the current and future health care workforce.
highlighted ahec programmatic activities
--AHEC Scholars Program: This 2-year program initiative recruits,
trains, and supports interdisciplinary groups of health
professions students committed to increase health care quality
through community-based service and health care transformation.
Every AHEC Scholars program includes 40 hours of didactic and
40 hours of community-based or clinical activities each year.
Through these experiences, Scholars develop new skills and
knowledge designed to expand their understanding of the social
determinants of health and health equity (or lack of), for
populations living in rural and underserved communities. This
curriculum is a critical tool to prepare a diverse, equitable,
compassionate, qualified health care workforce.
--Continuing Education: The NAO and member AHECs provide accredited
continuing education programs and professional support for
healthcare professionals who seek licensure and certification
credits with an emphasis on rural health and health care in
underserved areas.
--Health Professions Pipeline: AHECs expose students in grades 9-12
to health careers through job shadowing, health career
presentations, and summer programming. Undergraduates
participate in AHEC networking/enrichment programs to enhance
their knowledge, experience, and forward the pathway to health
professions school admission.
--Clinical Rotations: Clinical training rotations are available
throughout most of the AHEC network to enhance clinical
expertise for medical students, residents, pharmacy, PA, APRN
and other health professions students in rural and underserved
communities.
The AHEC program is reauthorized through FY 2025. The AHEC
authorization language recommends a funding level of $250,000 annually
for each AHEC Center. A FY 2023 funding level of $67 million would
facilitate that recommendation.
justification for nao's funding recommendation
Funding the AHEC program at $67 million provides critical
opportunities to support AHECs as they:
--Foster strategic community-based partnerships within the
communities they serve to address the health workforce needs
related to the emerging health issues such as COVID-19
pandemic;
--Strengthen linkages between academic health science centers and
community health service delivery systems to provide additional
training opportunities for students, faculty, and
practitioners;
--Increase the return on Federal investment by leveraging State and
local resources to meet the required 1:1 funding match in
support of health workforce development;
--Expedite the transformation of the health care system by training
the current and future workforce for a value-based, patient-
centered, team-based practice environment for innovative models
of care.
The AHEC network is a part of a critical pipeline that fuels the
recruitment, training, distribution, and retention of a national health
workforce. At a time where the AAMC projects our Nation will have a
shortage of nearly 120,000 physicians by 2030, AHEC stands as a central
access point in meeting this demanding shortage area. Primary care
practitioners are the front-line in prevention of disease and providing
cost savings in the United States healthcare system. In recognizing
this, the AHEC program engages in pre-pipeline, pipeline, and post-
pipeline activities that guide individuals through health careers
pathways and beyond, with a special emphasis on primary care providers.
In the 2020-2021 academic year, AHECs introduced more than 178,000
students, ranging from high school to collegiate status, to careers in
the health professions and health workforce. AHECs facilitated 24,766
student clinical rotations, many of which were in rural and
underserved. Additionally, AHECs were responsible for training 416,862
professionals through continuing education, and more than 7,000
students were enrolled in the AHEC Scholars program. Madam Chair, these
facts make AHECs integral in the recruitment, interdisciplinary
training, and retention of the healthcare workforce.
AHECs have a continual focus on improving the health care system by
working with 120 medical schools, 600 nursing and allied health
schools, healthcare settings like CHCs, behavioral health practices,
and community-based organizations across the Nation. Through these
longstanding partnerships, the AHECs employ traditional and innovative
approaches to develop and train a diverse health care workforce
prepared to deliver culturally appropriate, high-quality, team-based
care for rural and underserved communities. AHECs are embedded in the
communities they serve, positioning them to respond rapidly to emergent
training needs of health professionals, health professions students,
and inter-professional teams on issues associated with natural
disasters, disease outbreaks, and substance use disorders.
Madam Chair, thank you and the committee for the opportunity to
present the views of the National AHEC Organization. Allow me to re-
emphasize the funding request of $67.00 million for the Area Health
Education Centers program. As you begin the FY 2023 process, we look
forward to working with the subcommittee to continue prioritizing
health workforce initiatives that improve training opportunities, the
quality of our healthcare workforce, and alleviate patient care,
research in health disparities, and health professionals going into the
health workforce.
[This statement was submitted by Dwain Harris, Chief Executive
Officer,
National Area Health Education Centers Organization.]
______
Prepared Statement of the National Association of Councils on
Developmental Disabilities
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 $88.48 million
for the DD Councils within the Administration for Community Living
(ACL) in the Fiscal Year (FY) 2023 Labor-HHS-Education Appropriations
Bill, the same level included in the President's FY23 budget.
We also respectfully request that the following report language be
included in the Fiscal Year 2023 Labor, Health and Human Services,
Education Appropriations bill:
Technical Assistance.--The Committee instructs the Department to
provide not less than $700,000 for technical assistance and
training for the State Councils on Developmental Disabilities.
In addition, the Committee encourages ACL to consult with
Developmental Disabilities Act stakeholders prior to announcing
opportunities for new technical assistance projects and to
notify the Committee prior to releasing new funding opportunity
announcements, grants, or contract awards with technical
assistance funding.
Authorized by the Developmental Disabilities Assistance and Bill of
Rights Act (DD Act), DD Councils work collaboratively with the
University Centers for Excellence in Developmental Disabilities and the
Protection and Advocacy Program for Developmental Disabilities, 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. Appointed by Governors and consisting of
at least 60 percent of people with DD and their families, DD Councils
assess problems or gaps in the intellectual and developmental
disabilities (I/DD) system and design innovative solutions that make
real changes to social systems such as employment, transportation,
education, healthcare, housing and more, to fully integrate people with
I/DD into society.
The request for an increase in funding for FY 2023 is supported by
the steadily and rapidly increasing numbers of people with
developmental disabilities who continue to lack comprehensive and
coordinated support systems to meet specific needs for full community
inclusion. During the COVID-19 pandemic many people with developmental
disabilities lost the assistance provided by families and other
informal supports and people with disabilities disproportionately
experienced loss of employment. Demand for services even after the
pandemic has remained significantly higher than before the pandemic.
DD Councils direct resources through partnerships with local non-
profits, businesses, and State and local governments, to overcome
obstacles to community living for people with I/DD. States and
territories rely on DD Councils to turn fragmented approaches into
innovative and cost-effective strategies to increase the percentage of
individuals with I/DD who become independent, self-sufficient, and
integrated into the community. Examples of DD Council projects include
partnerships to increase competitive and integrated employment,
campaigns promoting access to qualified direct support workers,
programs for successfully transitioning to independent living, advocacy
for access to affordable housing, training to 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.
During the COVID-19 pandemic, DD Councils provided life-saving
access to information, resources, and support to people with I/DD and
their families. The past 2 years underscored the critical role of the
DD Councils to meet the needs of people with I/DD so they can live
safely in the community and free from discrimination. States have
called on DD Councils to create life-saving solutions to problems faced
by people with I/DD during the pandemic. Federal agencies and States
have looked to DD Councils to bridge public health communication gaps
with the I/DD community; advocate for non-discrimination in health
care; promote immunization; distribute personal protective equipment;
support access telehealth; and more. This funding request reflects the
increased need for direct resources through partnerships with local
non-profits, businesses and State and local governments, to provide
innovative and cost-effective strategies so more people with I/DD can
become independent, self-sufficient, and integrated into the community.
Thank you for consideration of our request. For more information,
please contact Erin Prangley at [email protected], National
Association of Councils on Developmental Disabilities, 1825 K Street,
N.W., Suite 600, Washington, D.C.
______
Prepared Statement of the National Association of County and City
Health Officials
The National Association of County and City Health Officials
(NACCHO) is the voice of the nearly 3,000 local health departments
across the Nation. Local health departments continue to lead the
Nationwide response to COVID-19, while also working to protect the
health and safety of their communities from a myriad of public health
challenges, many of which have worsened during the multi-year pandemic
response.
COVID-19 has brought to the fore the critical role of governmental
public health, especially local health departments, in all aspects of
daily life and exposed the consequences of years of underinvestment in
our public health system. Congress has the opportunity now to rebuild
the public health system to face current and future challenges. To
enable local health departments to support Federal public health
priorities and effectively lead in their communities, NACCHO requests
Congress provide robust investments to the public health workforce and
infrastructure, and exercise oversight to ensure Federal funds are
efficiently and equitably allocated to the local level.
public health loan repayment
The public health workforce is the backbone of our Nation's
governmental public health system, but was understaffed and overworked
even before the pandemic. Local health departments have lost over 20
percent of workforce capacity since 2008,\1\ and over a third of the
local public health workers were projected to leave the field in the
next 5 years due to retirement or to pursue opportunities in the
private sector.\2\ Furthermore, at least 500 local and State health
officials have reportedly left their positions during the pandemic due
to politicization, harassment, termination, and burnout.\3\ Combined,
these forces create an urgency to addressing our public health
workforce crisis.
---------------------------------------------------------------------------
\1\ NACCHO, 2019 National Profile of Local Health Departments,
https://www.naccho.org/uploads/downloadable-resources/Programs/Public-
Health-Infrastructure/NACCHO_2019_Profile_final.pdf.
\2\ Leider JP, Coronado F, Beck AJ, Harper E. Reconciling Supply
and Demand for State and Local Public Health Staff in an Era of
Retiring Baby Boomers. Am J Prev Med. 2018;54(3):334-340.
\3\ Baker M. and Ivory D. (2021, October 18). Why Public Health
Faces a Crisis Across the U.S. The New York Times. https://
www.nytimes.com/2021/10/18/us/coronavirus-public-health.html.
---------------------------------------------------------------------------
A bipartisan group of Senators have recognized this need and
introduced legislation, the Strengthening the Public Health Workforce
Act (S. 3506), that would authorize a public health workforce loan
repayment program and give local, State, and Tribal health departments
a vital tool to recruit and retain top talent. Additionally, Senators
Murray and Burr have incorporated the proposal into the PREVENT
Pandemics Act recently approved by the Senate Health, Education, Labor,
and Pensions Committee. In conjunction with this legislation, NACCHO
urges Congress to provide $200 million for the establishment of a
public health loan repayment program at the Health Resources and
Services Administration so that health departments can immediately
bolster their efforts to strengthen the public health workforce.
public health infrastructure and capacity
Local health departments operate on limited and unpredictable
budgets that do not allow for long-term investments in needed
infrastructure and cross-cutting needs. Federal public health funding
has traditionally followed a boom-and-bust cycle in response to
crises?. Additionally, funds are often limiting, for example tied to a
specific disease state or programmatic function, which makes it
difficult to invest in or sustain critical health department functions
not tied to a specific disease state. Local health departments need
sustainable, disease-agnostic, predictable funding to support local
public health infrastructure, including data modernization and
workforce development. Such funding would allow local health
departments to focus on certain skillsets that are critically
necessary--like communication, outreach, data analysis, and
digitalization--but that they largely lack due to current funding
constraints. The lack of this ability at the local level hinders
efforts to support Federal public health objectives.
NACCHO is grateful that Congress recognized this need and
established a new Public Health Infrastructure and Capacity line within
the CDC in fiscal year 2022, and NACCHO requests $1 billion for this
crucial program in fiscal year 2023. Importantly, funding to support
cross-cutting core public health functions should supplement, not
supplant the disease-specific funding that currently supports many
critical health department activities. Indeed, new capabilities
supported by disease-agnostic funding will ultimately enhance the
functionality of existing programs. NACCHO also requests Congress
require CDC to ensure at least 35 percent of a State's allocation be
directed toward local health departments with clear expectations
regarding the timing of such suballocations.
centers for disease control and prevention
The CDC has unmatched expertise and experience in tackling a broad
array of public health issues including the ongoing COVID-19 pandemic
and other pre-existing challenges that have been exacerbated by the
pandemic like mental health, substance use, sexually transmitted
infections, and chronic disease. CDC serves as the command center for
the Nation's public health defense system against emerging and
reemerging infectious diseases, man-made and natural disasters, and
other public health emergencies. Strong funding is critical to
supporting all of CDC's activities and programs, which are essential to
protect the health of our communities, and NACCHO requests $11 billion
for CDC in FY 2023. Due to years of underfunding, many CDC programs
have not received the resources that are needed to address the many
health challenges we face as a nation, resulting in many of CDC's most
effective prevention programs not reaching all communities.
Additionally, Federal funding from the CDC intended for both State
and local health departments continues to have variable reach to local
public health agencies. Ensuring these resources reach the local health
department level in a timely way is critical to enabling communities to
address public health needs. NACCHO requests that Congress include
report language similar to that included in the explanatory statement
accompanying Division H (L-HHS) of the fiscal year 2022 Consolidated
Appropriations Act (H.R. 2471) encouraging CDC to require States to
fund local health departments when programmatically appropriate, and
further urging CDC to publicly track and report to the Committee how
funds provided to State health departments are passed through to local
health departments, including amount, per grant award, by local
jurisdiction, and date funds are made available to each local health
department.
public health emergency preparedness cooperative agreement
The PHEP Cooperative Agreement provides funding to 50 States, 4
large cities (Chicago, Los Angeles County, New York City, and
Washington, D.C.), and eight territorial health departments to
strengthen public health departments' capacity and capability to
effectively plan for, respond to, and recover from public health
emergencies.
NACCHO urges $1 billion for PHEP in fiscal year 2023, the level at
which the program was originally funded when it was created after the
9/11 terrorist attacks. Public health emergencies have increased in
number and scope since the establishment of the PHEP program, and PHEP
funding has not kept pace. Restoring funding to $1 billion is necessary
to allow the program to comprehensively support local communities and
States in their ability to prepare to respond to terrorist threats,
infectious disease outbreaks, natural disasters, and biological,
chemical, nuclear, and radiological emergencies, and other threats.
More than 55 percent of local health departments rely solely on
Federal funding for emergency preparedness. However, funding from State
health departments to local health departments can have a varied
approach and have reduced over time as overall Federal appropriations
fell. To ensure all communities have the resources they need to prepare
for and respond to public health emergencies, NACCHO requests report
language to provide increased transparency around suballocations of
PHEP funding from States to local health departments, similar to
language included in both the House (H. Rept. 117-96) and Senate
Committee Reports for the FY22 Labor, Health and Human Services, and
Education, and Related Agencies Appropriations Bill requesting a State
distribution table in the fiscal year 2024 Congressional Budget
Justification, showing how funding is being allocated to local health
departments, how States are determining these allocations, and date
funds are made available to each local health department.
data modernization initiative
The local health department COVID-19 response was hampered by a
historical lack of resources, outdated systems, and an overall
underfunding of public health infrastructure. Public health needs a
robust, modern, and secure public health information ecosystem capable
of sustainment and surge that delivers real-time, accurate, and useful
data to public health and policymakers at the local, State, and Federal
levels. Across the country, local and State public health departments
operate a mismatched network of siloed public health information
systems, most of which do not talk to each other nor to the health care
delivery sector, and all of which are in urgent need of upgrade to
prepare for and respond to public health challenges. To meet these
challenges, NACCHO requests $250 million for the CDC's Data
Modernization Initiative and asks Congress to urge CDC to consider
local health department access and needs at all stages of data
development.
epidemiology and laboratory capacity awards
The ELC program provides annual funding, strategic direction, and
technical assistance to domestic jurisdictions for core capacities in
epidemiology, laboratory, and health information technology activities.
In addition to strengthening core infectious disease capacities
nationwide, this cooperative agreement also supports a myriad of
specific infectious disease programs. Like other Federal streams,
funding through ELC grants has variable reach to the local level.
NACCHO requests Congress urge CDC to work with States to prioritize
funding to local health departments based on factors such as population
size, disease burden, and other public health metrics to promote
equitable funding distribution, and to publicly track and report how
funds are passed through to local entities.
medical reserve corps
The Medical Reserve Corps (MRC) is a national network of local-
organized volunteers committed to improving the public health and
resiliency of their communities. Two-thirds of the Nation's 800 MRC
units are housed within local health departments. MRCs are deployed to
address public health emergencies and have stepped up to serve their
communities during the COVID-19 response--in FY2021, MRC units provided
2.7 million hours of service, compared to about 300,000 hours in FY2019
prior to the pandemic. Additionally, the number of volunteers across
the MRC network has grown from roughly 175,000 at the beginning of 2020
to over 300,000. The total economic value of MRC volunteer
contributions is estimated at over $91 million.
NACCHO advocates for $12 million for MRC so that capacity built
during COVID-19 can be sustained and at the ready for future public
health emergency responses. NACCHO also requests Congress urge ASPR to
continue the historical funding approach that provides funds directly
to local MRC units and ensures efficient release and delivery of funds.
NACCHO appreciates the consideration of these requests and looks
forward to working with Congress to strengthen and support local 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
Federally Impacted Schools
Dear Chairwoman Murray and Ranking Member Blunt:
The National Association of Federally Impacted Schools (NAFIS)
strongly urges the Senate Labor-Health and Human Services-Education
Appropriations subcommittee to continue recognizing the Federal
Government's obligation to federally impacted communities as you set
funding priorities for the U.S. Department of Education.
Based on our analysis, we urge you to provide at least a $2 million
increase for Federal Property and a $55 million increase for Basic
Support for FY 2023.
NAFIS represents the 1,100-plus Impact Aid-recipient school
districts that together educate 10 million students across the Nation.
Impact Aid is the oldest elementary and secondary education program and
is a partnership between local communities and the Federal Government
where there is significant non-taxable property, such as military
installations, Indian treaty or trust land, Alaska Native Claims
Settlement Act land, Federal low-rent housing facilities, national
parks and national laboratories. Congress recognized in 1950 that the
Federal Government had an obligation to help meet the local
responsibility of financing public education in areas impacted by a
Federal presence. That same recognition holds true today.
While the Administration has indicated it does not intend to
support funding cuts to education programs, the President's FY 2023
budget request includes many--including a $16 million cut to Impact
Aid--because Congress finalized FY 2022 appropriations after the
Administration finalized its FY 2023 request. It is particularly
disappointing that the Impact Aid funding request is notably below the
levels included in both the House and Senate FY 2022 appropriations
bills, which were in conference at the time the FY 2023 budget was
developed.
NAFIS is grateful for the subcommittee's past support of the Impact
Aid program, and we hope to see that support continue in FY 2023.
Federally impacted school districts cannot afford stagnant
appropriations or a loss of funding. FY 2023 will require additional
funds to build on the important funding progress made in the last few
years.
Section 7003 Basic Support: Although appropriations have increased
in recent years, Basic Support remains significantly underfunded. The
Basic Support payment formula is based on several factors, including
the actual cost of education. That cost is measured by the Local
Contribution Rate (LCR), which is based on per pupil expenditures (PPE)
from 3 years prior.
Basic Support is currently funded at about 60 percent of the
payment formula. Because the program is so underfunded, the Impact Aid
law includes a proration factor called the Learning Opportunity
Threshold (LOT), which measures the need a school district has for
Impact Aid funds. The higher a school district's LOT, the more reliant
it is on Impact Aid.
In 2020, for the first time in more than a decade, LOT paid out at
over 100 percent. That means the highest need Impact Aid districts got
their full payment. However, hundreds of other school districts still
received far less than they would have if the program were fully
funded.
For FY 2021, the LOT Payout is estimated to be 98 percent. Whenever
the LOT Payout is below 100 percent, all federally impacted school
districts--including those with the most need that rely most heavily on
Impact Aid funds to operate--receive payments below those calculated by
the formula in the Impact Aid law.
------------------------------------------------------------------------
Fiscal Year LOT Payout LCR Rates
------------------------------------------------------------------------
FY 2011........................... 97.066 percent of LOT $5,215.00
FY 2012........................... 96.109 percent of LOT $5,330.00
FY 2013........................... 87.061 percent of LOT $5,404.50
FY 2014........................... 91.730 percent of LOT $5,406.00
FY 2015........................... 93.074 percent of LOT $5,386.00
FY 2016........................... 93.690 percent of LOT $5,468.00
FY 2017........................... 92.332 percent of LOT $5,635.50
FY 2018........................... 96.187 percent of LOT $5,840.50
FY 2019........................... 98.138 percent of LOT $6,036.00
FY 2020........................... 101.15 percent of LOT $6,268.50
FY 2021........................... 98 percent of LOT $6,495.00
FY 2022\*\........................ 100+ percent of LOT $6,794.00
------------------------------------------------------------------------
\*\Estimated final rates
We expect that the LCR in the Impact Aid formula could increase by
3.5-4 percent in FY 2023 based on projected increases in per pupil
expenditures (NCES data will be available in September on which the FY
2023 LCR will be based). Without a corresponding increase in
appropriations, the LOT Payout could drop substantially.
The increases in appropriations and LOT Payout have been critical
for federally impacted school districts, especially given increased
costs stemming from the COVID-19 pandemic. A $55 million increase for
FY 2023 would build on these increases and help the program keep pace
with the rising costs of education. With that increase, the 7003 Basic
Support formula will still be approximately $850 million below fully
funding its formula. We encourage Congress to make up this gap and set
a glide path to fully fund the formula.
Section 7003(d) Children with Disabilities: Another important
element of Impact Aid is the Children with Disabilities (CWD) section,
which provides funding for military-connected or Indian lands students
with an active Individualized Education Program (IEP). It has been
funded at $48 million since 2008, despite rising costs of providing
special education services. This currently means a school district
receives approximately $1,200 per eligible student living on Federal
property (or $600 for military-connected students who do not live on a
military installation). As the cost of special education rises, this
$48 million appropriation is stretched too thin, especially given the
chronic underfunding of IDEA. Payments per CWD dropped from $1,215.65
in FY 2018 to $1,205.00 in FY20. School districts are continuing to
educate their students with disabilities, spending significant general
funds to do so.
Section 7002 Federal Property: We thank you for the $4 million
increase in 7002 payments in FYs 2019 through 2022. For FY 2023, we
request an additional $2 million to build on these increases. These
funds will partially offset new costs as the Federal Government
continues to take property off local tax rolls and as the value of
taxable land on which the funding formula is based increases.
Section 7007 Construction: Finally, the Construction section of
Impact Aid receives very little support, languishing at a $17 million
level for the past several years. For comparison purposes, in FY 2005
Section 7007 received just over $45 million. We recommend that FY 2023
Impact Aid Section 7007 funds be distributed under Section 7007(b)
competitive grants, since FY 2022 funds will be dispersed through
Section 7007(a) formula grants.
School superintendents are saying...
Impact Aid provides the necessary funding to ensure that all
students in our district have access to a Free Appropriate
Public Education and high levels of learning every day for
every student to ensure that all students are prepared to
graduate Life, College, and Career ready!--Washington
We would not be able to operate without Impact Aid; our Impact Aid
funds pay for all support staff, consultants, utilities, daily
operations, professional development, curriculum, materials,
and technology needs.--Montana
Impact Aid money has helped improve our relations with the Southern
Ute Tribe. Over the last 10 years, we have developed a
meaningful MOU, included a representative from the Tribe on our
administrative team, added a Ute Language Class, and had
regular and meaningful community meetings with Tribal leaders
to get important feedback.--Colorado
Because of Impact Aid, we have truly leveled the playing field and
dramatically improved the working relationship with the Seneca
Nation. Instead of the conversation being framed ``you are not
doing enough'' the conversation is now ``how can we partner to
do more for all children''. Because we have been able to use IA
funding to improve program, graduation rates, drop out rates,
Advanced Placement rates our enrollment has dramatically
increased in the past 5 years (+300 students). Simply put IA
has made our ``product'' better, much better.--New York
Additional investments in Impact Aid are critical to help school
districts close achievement gaps, update technology, expand access to
early childhood and afterschool programs, integrate culturally relevant
curriculum, replace failing infrastructure, offer competitive salaries
to recruit and retain school leaders, and more. These investments help
school districts provide supportive and nourishing learning
environments for all students. Through increased funding, we ask you to
continue to view the program as a critical Federal investment and a tax
replacement program for federally impacted communities.
Sincerely.
[This statement was submitted by Nicole Russell, Executive
Director, National
Association of Federally Impacted Schools.]
______
Prepared Statement of the National Association of Drug Court
Professionals
Chairwoman Murray, Ranking Member Blunt, and distinguished members
of the subcommittee, I am honored to have the opportunity to submit my
testimony on behalf of 1.5 million graduates of treatment court
programs and the 150,000 people treatment court programs will connect
to lifesaving substance use and mental health treatment this year
alone. Given the ongoing substance use crisis, I am requesting that
Congress provide funding of $105 million for the Drug Treatment Court
Program at the Department of Health and Human Services, Substance Abuse
and Mental Health Services Administration for fiscal year 2023.
I am writing to you today as a husband, employee, taxpayer, and
grateful drug court graduate. Before coming to the Lewis County Drug
Court program, I spent much of my life cycling in and out of the
justice system for crimes fueled by addiction. I went to jail seven
times--and that doesn't encompass the many times I wasn't caught
breaking and entering, stealing, and causing general harm to my
community doing anything to support my addiction. I had also been to
treatment multiple times, but without accountability, I'd never truly
had the chance to heal from the trauma of my past, and I was never able
to sustain my recovery. I often wonder what might have happened if
there were no drug court available to me.
The multidisciplinary treatment court team, which includes case
managers, treatment providers, and counselors, not only looked at the
facts of my case, but they also looked at my entire criminal history,
my addiction history, and my life experiences up to that point. They
created a plan to ensure I received the treatment and social services I
needed, while still holding me accountable for my actions and the
requirements of the program. Receiving treatment for my addiction was
only part of the process. Because sustained, long-term recovery is the
goal, drug court helped me work on myself from the inside out,
addressing issues that had been impacting my behavior since I was a
child.
I completed the program in 2016, and I have dedicated myself to
repairing the damage I caused by giving to others what was given to me.
I first worked for an organization that conducts outreach to vulnerable
populations with substance use disorders and helps them get their lives
back on track. I also became the president of the nonprofit
organization that helps support the Lewis County Drug Court, ensuring
the lifesaving work of our program continues well into the future.
In February of this year, I had to step down as president of that
organization, but for good reason--I became the community outreach
worker at the very same drug court that changed my life. The treatment
court team is like a family, and I work every day alongside my fellow
team members to ensure our participants are connected to the services
and treatment they need to turn their lives around the way I did. And
while I'm no longer president, I'm still a proud and active member of
the nonprofit organization full of graduates like me. And taking
``family'' one step further, I recently married my wife.
I am proof that treatment courts, such as adult drug courts,
veterans treatment courts, family treatment courts, and others, offer a
public health and public safety response to these crises by expanding
and enhancing substance use treatment capacity to serve more
individuals in their communities.
But don't just take my word for it; there is overwhelming empirical
evidence showing the effectiveness of these programs. The Government
Accountability Office has concluded the drug court model reduces crime
by up to 58 percent. Further, the Multi-Site Adult Drug Court
Evaluation conducted by the Department of Justice confirmed drug
treatment courts significantly reduce both drug use and crime, as well
as finding a cost savings averaging $6,000 for every individual served.
Additional benefits include improved employment, housing, and financial
stability, as well as reduced foster care placements.
I am not alone in my success. This year, treatment courts will
connect 150,000 people who have mental health and substance use
disorders with treatment options best suited to them. Together, the
court team offers the tools to overcome substance use disorder and past
trauma to create meaningful, healthy relationships. Support from the
Drug Treatment Court Program at the Department of Health and Human
Services ensures the nearly 4,000 treatment courts in the United States
today provide critical treatment services to save lives and reunite
families.
But as our country continues to battle the ongoing opioid crisis,
we know there are many more people who still need this opportunity. I
strongly urge this committee to recommend funding of $105 million to
the Drug Treatment Court Program in fiscal year 2023, so treatment
courts in Washington and beyond can continue providing substance use
treatment that allows people to heal from the inside out.
[This statement was submitted by Brant Byrd, graduate of Lewis
County,
Washington, Drug Court Chehalis, Washington.]
______
Prepared Statement of the National Association of Free and Charitable
Clinics
On behalf of the National Association of Free and Charitable
Clinics (NAFC) Board of Directors, our patients, and the 1,400 Free and
Charitable Clinics in the United States, thank you for the opportunity
to submit this written testimony to the Labor, Health, and Human
Services, Education, and Related Agencies subcommittee. The National
Association of Free and Charitable Clinics is respectfully asking for
funding for the following HHS programs, the Federal Tort Claims Act
(FTCA) for Free Clinics, the Nurse Loan Repayment Program, the National
Health Service Corps, The Breast and Cervical Cancer Screening Program
under Title X, and the Corporation for National and Community Service.
background
Annually, 2 million patients through 6.9 patient visits receive
health care at America's Free and Charitable Clinics. This care is
provided by a volunteer and staff workforce of over 200,000 individuals
from medical and non-medical fields. Unfortunately, 96% of our patients
are uninsured and living at 100 to 300% of the poverty level. In
addition, 4% of our patient population is eligible for Medicaid in
their States; however, they do not have access to dental care or
affordable medications through their state Medicare Medicaid programs.
In addition, 58% of our patients are women, 37% of patients are
Hispanic (Hispanic individuals make up 18% of the US population), 36%
of patients are Caucasian (Caucasian individuals make up 60% of the US
population, and 17% of patients are Black (Black individuals make up
13% of the US population).
Racial, societal, and economic factors directly impact people's
health and ability to access health care and other resources needed to
have a healthy life. Free and Charitable Clinics and Pharmacies are on
the frontlines of natural disasters and the coronavirus pandemic, but
they are on the frontlines of injustice in health care. We are
committed to working toward health equity and addressing the racial,
societal, and economic factors that influence people's health.
Free and Charitable Clinics and Charitable Pharmacies are safety-
net health care organizations that utilize a volunteer/staff model to
provide a range of medical, dental, pharmacy, vision, and behavioral
health services to economically disadvantaged individuals. Such
clinics/pharmacies are 501(c)(3) tax-exempt organizations or operate as
a program component or affiliate of a 501(c)(3) organization. Entities
that otherwise meet the above definition, but charge a nominal/sliding
fee to patients, may still be considered Free or Charitable Clinics or
Pharmacies provide essential services are delivered regardless of the
patient's ability to pay. Free or Charitable Clinics and Charitable
Pharmacies restrict eligibility for their services to individuals who
are uninsured, underinsured, and have limited or no access to primary,
specialty, or prescription health care.
appropriations request
Our clinics receive little to no State or Federal funding, we do
not receive HRSA 330 funds, and we are not Federally Qualified Health
Centers or Rural Health Centers. Therefore, our clinics rely heavily on
the generosity of individual donors, foundations, and grants as funding
sources.
Free and Charitable Clinics are a supreme example of private-public
partnerships. We are excellent partners to the Federal Government
because we provide access to health care to individuals who typically
utilize the emergency department for routine care. Therefore, it is
imperative to our operations that the Free Clinic Medical Malpractice
(FTCA), the National Health Service Corps, the Nurse Corps Loan
Repayment Program, The Breast and Cervical Cancer Screening Program
under Title X, and the Corporation for National and Community Service
programs continue to be adequately funded.
FTCA
The Federal Torts Claims Act Program allows volunteer medical
providers to provide health care to our patient populations and receive
malpractice protection from the Federal Government. In addition to
saving the clinics money, this program allows providers to understand
that their expertise is valued and essential to the health of our
patients. Therefore, we request that this program be funded in FY23 at
the FY22 level of $1 million.
Nurse Corps Loan Repayment Program
The Nurse Corps Loan Repayment Program allows registered nurses
(including advanced practice registered nurses and nursing faculty) to
help to create healthy communities in poor urban and rural areas as
they build their careers by paying off 60% of their unpaid nursing
student loans in just 2 years- plus an additional 25% of the original
balance for an optional third year. In return, NURSE Corps members
fulfill a service obligation at one of the eligible entities located in
designated mental health or primary medical care Health Professional
Shortage Areas across the United States. This program allows free and
charitable clinics to recruit talented nurses by assisting them with
their nursing school loans. Therefore, we request that this program be
fully funded in FY23 at the FY22 levels.
National Health Service Corps
The National Health Service Corps allows the next generation of
medical providers to receive loan repayment for providing their time
and expertise in a clinic that is in a health professional shortage
area. Over 52% of clinics are in a health professional shortage area.
The loan repayment program also allows for more medical students or
nursing students to understand that the need for primary care doctors
is at an all-time high in this country. Therefore, we ask that this
program be funded at the FY23 budget request level of $210 million.
Breast and Cervical Screenings
The Breast and Cervical Cancer Screening Program funded under Title
X is how they receive routine cancer screenings for many uninsured
women. According to a study conducted by the American Cancer Society,
Emory University, and Dana Farber Institute: Differences in health
insurance explained about 35% of the excess risk of death in black
women compared with white women. Almost three times as many black women
were uninsured or had Medicaid insurance (22.7%) compared to white
women (8.4%). The study authors wrote, ``Lack of insurance is a barrier
to receiving timely and high-quality treatment and screening
services.'' Free and Charitable Clinics utilize this program to ensure
that our patients have access to screening, testing, and life-saving
treatment. Therefore, we request that this program be fully funded in
FY23 at the FY22 levels.
Corporation for National and Community Service
In addition to private donations, Free and Charitable Clinics need
volunteers to increase our capacity at our locations across the
country. The AmeriCorps Vista program allows clinics to enhance their
operations, procedures, policies, and educational materials. The
AmeriCorps Vista program is essential for expanding care and allowing
volunteers to receive work experience in a non-profit setting.
Therefore, we ask that this program be fully funded in FY23 at the FY22
levels.
closing
Our patients face various complex challenges and barriers to health
care access. Therefore, Free & Charitable Clinics have been deeply
committed to providing whole-person health care and addressing social
determinants of health and health disparities.
Please ensure that these programs continue to be fully funded, so
we can continue to partner to ensure that every person has access to
affordable quality health care. We thank you for the opportunity to
share this written testimony.
[This statement was submitted by Nicole Lamoureux, CEO and
President,
National Association of Free and Charitable Clinics.]
______
Prepared Statement of National Association of State Head Injury
Administrators
On behalf of the National Association of State Head Injury
Administrators (NASHIA), thank you for the opportunity to submit
testimony regarding FY 2023 appropriations for Federal programs that
impact approximately 2.87 million Americans who are treated annually in
emergency departments and hospitals for a traumatic brain injury (CDC,
2014). We appreciate your support for additional funding for FY 2022 to
the U.S. Department of Health and Human Services' (HHS) Administration
for Community Living (ACL) TBI State Partnership Program that helps
States expand services to address the cognitive, behavioral and
physical rehabilitative and long-term needs of Americans living with
brain injury in accordance with the Traumatic Brain Injury (TBI)
Program Reauthorization Act of 2018.
However, as not all States or territories are currently
participating in the grant program, NASHIA is requesting increased
funding for the ACL TBI State Partnership Program (TBI SPP) so that
individuals living with brain injury and their families have resources
and assistance to return to home and community, school and employment
regardless of where they live in this country. In addition, we support
full funding for the National Concussion Surveillance System
administered by the CDC's National Center for Injury Prevention and
Control (NCIPC). And, we also support additional funding for the ACL's
National Institute on Disability, Independent Living, and
Rehabilitation Research (NIDILRR) program authorized by the Workforce
Innovation and Opportunity Act (WIOA) of 2014, which authorizes
research, including research conducted by the TBI Model Systems.
Specifically, NASHIA is requesting:
--$19 million additional funding for the ACL TBI State Partnership
Program to provide funding to all States, territories and
District of Columbia;
--$5 million additional funding for the CDC's NCIPC to establish and
oversee a National Concussion Surveillance System as authorized
by the TBI Program Reauthorization Act of 2018.
NASHIA is also requesting a funding increase of $6.6 million to
expand the NIDILRR TBI research capacity through the TBI Model Systems
(TBIMS):
--To increase the number of TBIMS from 16 to 18 ($2.5 million each;
and
--$1 million to expand TBIMIS collaborative research projects for
additional research on TBI as a chronic condition.
Each year, a substantial number of Americans are injured due to
motor vehicle crashes, falls, military-related injuries, violence,
industrial injuries, sports-related injuries and other injuries that
cause cognitive, emotional, physical, sensory and health-related
problems resulting in unemployment and loss income; homelessness;
incarceration; and institutional and nursing home placement due to lack
of community alternatives. While recent trends have noted the
increasing number of Americans with TBI-related disabilities among
older adults due to falls, the COVID-19 pandemic is raising alarms
regarding those who are infected who may experience hypoxia due to the
deprivation of oxygen, resulting in brain damage that may necessitate
the need for rehabilitation to regain functioning and ongoing supports
should functioning not be restored. In addition, the increased risk of
domestic and intimate partner violence during the time of the ``stay at
home'' orders put people at risk for sustaining a brain injury from the
abuser hitting the head, slamming the head against the wall or from
near strangulation. As we emerge from the pandemic, the impact on both
those at risk for a brain injury and for those with a brain injury will
certainly become more apparent.
This past year has been especially challenging for individuals with
brain injury and their families. States have reported that brain injury
program participants have cancelled services due to the fear and
anxiety that COVID-19 has caused them. At the same time, providers have
experienced loss of income as the result of not being able to perform
contractual duties due to the restrictions related to the pandemic.
Thus, the Federal funding requested is critical to assist States with
issues that emanated from the pandemic as programs and services are
brought back to pre-pandemic status.
administration for community living--tbi act programs
The ACL TBI State Partnership Grant Program is the only program
that assists States in building and expanding service capacity to
address the complex needs associated with brain injury that generally
require the coordination of multiple systems (e.g., medical,
rehabilitation, education, vocational, behavioral health, and Medicaid/
Medicare) and payers (e.g., insurance, Workers' Comp, State and Federal
programs). Twenty-eight States are currently funded by the ACL TBI SPP
for 5 years. We are requesting additional funding so that all States,
territories and District of Columbia may receive funding to address
gaps in services within their States.
These grants also help to carry out the ACL priorities to increase
direct services, including home and community-based services;
accelerating COVID-19 recovery; supporting caregivers; and advancing
equity.
centers for disease control and prevention--national center on injury
prevention and control
CDC's National Injury Center initiated a pilot study as a first
step in implementing a national surveillance system to determine the
extent of mild brain injury or concussions in this country. Most
individuals with a concussion are treated in an emergency department or
physician's office and may not be reported in other data systems that
capture the number of Americans who are hospitalized with moderate to
severe TBI. Subsequently, Congress included $5 million authorization to
implement the National Concussion Surveillance System within the TBI
Program Reauthorization Act of 2018.
Last year, the Government Accountability Office (GAO) issued a
Report to Congress that found that data on the overall prevalence of
brain injuries resulting from intimate partner violence are limited and
that such data is needed to better understand the problem to ensure
that resources are targeted appropriately to address these issues. In
2013, the Institute of Medicine (IOM) and the National Research Council
released an extensive report on sports-related concussions in children
and teens and also examined sports-related concussions among military
dependents, as well as concussions in military personnel ages 18 to 21
that result from sports and physical training at military service
academies or during recruit training. The report noted that limited
data is available and recommended that CDC oversee a national
surveillance system to accurately determine the incidence of sports-
related concussions.
We strongly support funding to implement a national surveillance
system to help States, Federal and national partners with needed data
to address prevention, identification, and treatment for concussions.
We are joined in this support by:
AANS/CNS Joint Section on Neurotrauma & Critical Care; Advancing
States; Alzheimer's Association; American Academy of Physical Medicine
and Rehabilitation (AAPMR); American Association of Neurological
Surgeons; American Physical Therapy Association; Brain Injury
Association of America; Concussion Legacy Foundation; Congress of
Neurological Surgeons; Friends of TBI Model Systems; Injury Prevention
Research Center at Emory; Matthew Gfeller Center, University of North
Carolina at Chapel Hill; National Association of State Directors of
Developmental Disabilities Services; National Association of State
Mental Health Program Directors; National Athletic Trainers'
Association; National Disability Rights Network; North American Brain
Injury Society; Safe Kids Worldwide; SCORE Program, Children's National
Hospital; The Center on Brain Injury Research & Training at the
University of Oregon; The National Concussion Management Center; United
States Brain Injury Alliance (USBIA); USA Field Hockey; USA Lacrosse;
and USA Football.
acl's national institute on disability, independent living, and
rehabilitation research (nidilrr)
NIDILRR supports innovative projects and research in the delivery,
demonstration, and evaluation of medical, rehabilitation, vocational,
and other services designed to meet the needs of individuals with TBI
through TBI Model Systems grants. Each TBI Model System contributes to
the TBI Model Systems National Data and Statistical Center (TBINDSC),
participates in independent and collaborative research, and provides
valuable information and resources. This research is critical to help
TBI providers to better deliver services that result in good outcomes.
In closing, NASHIA is a nonprofit organization that 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. Federal funding is critical to
help States in that endeavor, including data and research to support an
effective delivery system. We urge you to consider increasing funding
to the ACL TBI State Partnership Program; the ACL NIDILRR program to
expand TBI research; and to CDC to establish a National Concussion
Surveillance System.
Thank you for your continued support. Should you wish additional
information, please do not hesitate to contact: Susan L. Vaughn,
Director of Public Policy, [email protected] or Zaida Ricker, NASHIA
Government Relations, [email protected].
______
Prepared Statement of the National Coalition for Homeless Veterans
Dear Chair Murray and Ranking Member Blunt, Chairman Heinrich and
Ranking Member Boozman, and Chairman Schatz and Ranking Member Collins:
As you begin work on the fiscal year 2023 Appropriations bills, the
National Coalition for Homeless Veterans (NCHV) submits this letter as
testimony, requesting your respective subcommittees to fully fund the
programs that directly impact homeless veterans to perpetuate the
successes in reduction of homeless veterans. Multiple Federal
departments and agencies play vital roles in combatting, preventing,
and ending veteran homelessness in America including the Department of
Labor (DOL), the Department of Veterans' Affairs (VA) and the
Department of Housing and Urban Development (HUD).
COVID-19 has continually impacted the economy in unprecedented
ways, and as the VA's own Secretary testified, we have yet to reach
peak requests for care. The Committee's diligence in providing
emergency appropriations for these programs shows great foresight, yet
now we must work toward permanent housing for those veterans housed
with those funds, in regular program appropriations so we do not return
veterans to pre-emergency levels of veteran homelessness. Every veteran
deserves safe and permanent housing, whether they are currently
experiencing homelessness or are facing housing-cost burdens that put
them at risk of homelessness. We therefore ask that you fully fund the
listed programs at the following levels:
department of labor
The Homeless Veterans' Reintegration Program (HVRP) provides
services to assist in reintegrating homeless veterans into meaningful
employment within the labor force and to stimulate the development of
service delivery systems that will address the employment challenges
facing homeless veterans. ($107.5 Million)
department of veterans affairs
1. The Healthcare for Homeless Veterans Program (HCHV) performs
outreach to identify veterans experiencing homelessness who are
eligible for VA services and assist these veterans in accessing
appropriate health care and benefits. ($275 Million)
The Homeless Providers Grant and Per Diem (GPD) promotes the
development and provision of transitional housing and services with the
goal of helping homeless veterans achieve residential stability,
increase their skill levels and/or income, and obtain greater self-
determination. Includes $180 million for post-covid per diem
adjustments and $50 million for the next round of Capital Grants. ($500
Million)
The Healthcare for Reentry Veterans and Veteran's Justice Outreach
program helps justice-involved veterans avoid the unnecessary
criminalization of mental illness and extended incarceration by
ensuring that eligible veterans have timely access to Veterans Health
Administration. ($75 Million)
The Supportive Services for Veteran Families (SSVF) program
provides funding for very low-income veteran families in or
transitioning to permanent housing. The Secretary has expressed a
departmental goal of permanently housing an additional 38,000 homeless
veterans by the end of the year and the funding should reflect that
aim. NCHV is requesting continued report or bill language to ensure
sufficient rapid rehousing and homelessness prevention capacity
monitoring the expansion of the shallow subsidy initiative of the SSVF
program until outcomes are tangible. ($795 Million)
Case Managers working Case Management for the HUD-VASH Program work
with homeless veterans can use this resource to address the
multifaceted needs they have. Veterans must agree to participate in
case management in order to receive a HUD-VASH voucher. The President's
Fiscal Year 2023 Budget and the VA secretary have requested larger base
increases to continue to hire full-time equivalent (FTE) case managers.
($594 Million)
The Medical Support and Compliance (0152) accounts under VA Medical
Services for homeless veteran programs requires additional funding to
support the use of administrative fees for the hiring and retention of
staff. (Highest Funding Possible)
department of housing and urban development
Additional funding for new HUD-VASH Vouchers provides a much-needed
yearly increase in program funding to allow for continued referrals.
Many factors contribute to underutilization like housing stock, case
manager hiring and retention, and VA has been working to alleviate what
it can and has made some progress on hiring FTEs. Additional vouchers
will allow developers to operationalize additional supportive housing
for veterans. Includes $40 million for project-based vouchers. ($90
Million)
Tribal HUD-VASH--Tribes have been working to actively increase
capacity within HUD-VASH to meet community needs. ($5 Million)
reporting
We request that each Secretary produce continuing reports on racial
equity and access to programs providing services to homeless veterans.
The reports track departmental expenditures within Homeless Veteran
Programs specifically with regard for minority, female and LGBTQ
populations. This report would be provided annually to the
Appropriations and Veterans' Affairs subcommittees of jurisdiction. The
information should be disaggregated by ethnicity, age, gender identity,
and discharge status. The data collected to produce the report will be
crucial in determining how to continue future homeless veteran
population reductions and should be accessible to the general public.
We request report language in the VA appropriations bill to
continue the implementation of a housing first oriented approach to
addressing veteran homelessness. Given the research on its outcomes and
cost effectiveness NCHV requests Congress direct the Department to
continue implementation of housing-first oriented systems and efforts
to meaningfully incorporate appropriate levels of transitional housing
capacity into systems across the country to meet the needs of veterans
who choose recovery services or transitional housing programs.
We request the VA Secretary produce a report regarding increased
effectiveness and efficiency of VA's Grant and Per Diem. The report
would include historical rate data (3-5 years) disaggregated by
location & zip code and not solely by grantee name, in addition to
ethnicity, age, gender identity, and discharge status. The report would
include the number of beds indicated by geographic location and
disaggregated by type of bed and their level of congregate setting. The
report would also include a proposal and ramifications for decoupling
GPD rates from the state home domiciliary rate in favor of more
regional calculation based on area fair market rents. When the National
Health Emergency sunsets the GPD rate will revert to 115 percent of the
state home rate. NCHV has testified repeatedly that this rate is
nowhere near sufficient to shelter veterans in major urban areas like
California where the cost is over 400 percent of the state home rates.
We thank you for your past and continued support of veteran
homelessness programs and your consideration of these important
requests.
Sincerely.
[This statement was submitted by Kathryn Monet, Chief Executive
Officer,
National Coalition for Homeless Veterans.]
______
Prepared Statement of the National College Attainment Network
On behalf of the National College Attainment Network (NCAN), we
write to respectfully request that investments in education programs,
such as funding for Federal student aid, remain a high priority for the
Labor-HHS-Education subcommittee in Fiscal Year 2023. NCAN hopes that
discretionary funding will rise in FY23 for programs that are critical
to our Nation's students and future workforce. Thank you for your
continued leadership on investing in the Federal programs that support
students in their pursuit of postsecondary education,
For FY23, NCAN requests these funding levels for the U.S.
Department of Education programs:
--NCAN recommends the requisite funding in FY23 so that the maximum
Pell Grant award can be increased to $12,990, double the
maximum Pell Grant award (award year 2021-22).
--Supplementary Educational Opportunity Grant funding of $1.09
billion.
--Federal Work-Study funding of $1.52 billion.
--TRIO program funding of $1.307 billion.
--GEAR UP funding of $435 million.
--$620 million increase in administrative funding for Federal student
aid management.
Additionally, we request that the Corporation for National and
Community Service receive $1.34 billion in funding for FY23--and that
the AmeriCorps program, that allows some college access programs to
provide near-peer mentors for their students, receive $557 million in
funding.
Founded in 1995, NCAN represents more than 500 members across the
country that all work toward a shared mission to build, strengthen, and
empower communities and stakeholders to close equity gaps in
postsecondary attainment for all students. Collectively, we are
committed to college access and success so that all students,
especially those underrepresented in postsecondary education, can
achieve their educational dreams. NCAN's members span a broad range of
the education, nonprofit, government, and civic sectors, including
national and community-based nonprofit organizations, federally funded
TRIO and GEAR UP programs, school districts, colleges and universities,
foundations, and corporations.
Drawing on the expertise of our hundreds of organizational members
in every U.S. state, NCAN is dedicated to improving the quality and
quantity of support that underrepresented students receive to apply to,
enter, and succeed in postsecondary education. Students of color,
students from low-income backgrounds, and those who are the first in
their family to attend college experience disproportionately lower
rates of postsecondary success. For example, a low-income student is 29
percent less likely to enroll in postsecondary education directly after
high school than a high-income student. Ultimately, only 35 percent of
low-income high school students obtain a postsecondary credential by
age 26, compared to 72 percent of high-income students.
To help close equity gaps in attainment, NCAN requests the
following in Federal investments:
Pell Grant Investments
NCAN recommends that the maximum Pell Grant award be increased to
$12,990, double the maximum award (award year 2021-22).
The Pell Grant has served as the cornerstone of financial aid for
students from low-income backgrounds pursuing higher education since
its creation in 1972. This need-based grant provides crucial support
for around 7 million students each year, or about one-third of
undergraduates. Without this need-based grant funding, far less
students from low-income backgrounds would be able to access higher
education. NCAN appreciates investments Congress has made to raise the
maximum Pell Grant award in recent years.
Given that the previously required automatic inflationary increases
have expired, annual investments by Congress are essential for our
Nation's students who are least likely to have the means to pay for
education after high school. Even with recent investments, the maximum
Pell Grant award's purchasing power at a 4-year public institution only
covers 30 percent of the cost of attendance. At its high in the 1970s,
the maximum Pell Grant award could have covered more than three-fourths
of the average cost of attendance--tuition, fees, and living expenses--
at a 4-year public institution.
To address its long-term purchasing power, and so that the maximum
award cover at least half of the cost of attendance at a 4-year public
institution, the maximum Pell Grant award should be doubled. In the
president's FY23 budget request, the administration requests Congress
consider a Pell Grant increase of $1,775, through discretionary and
mandatory funding, to bring the maximum award to $8,670 for the 2023-24
award year. If Congress adopted this increase, the maximum award's
purchasing power would increase to 36 percent. Further, this historic
investment is necessary to reach the goal outlined in the president's
budget of doubling the Pell grant by 2029.
FAFSA Simplification
In the president's FY23 budget request, the administration requests
a $620 million increase in administrative funding for the management of
Federal student aid. This funding is necessary to help with the
implementation of the FAFSA Simplification Act and FUTURE Act--two laws
that will achieve the goal of simplifying the Free Application for
Federal Student Aid (FAFSA) process, a top priority for NCAN. With the
Office of Federal Student Aid announcing a phased implementation plan
for FAFSA simplification, to take full effect 1 year later than
originally anticipated, NCAN supports this funding request to ensure
that the timeline is not further delayed. The urgency for students to
access need-based aid has only grown since passage of the legislation.
Campus-Based Aid
As low-income students piece together resources from a variety of
sources to support their postsecondary education pursuits, every dollar
and type of aid is significant. For most low-income students, the
Supplemental Educational Opportunity Grant (SEOG) and Federal Work-
Study help to fill unmet need in their financial aid packages.
The SEOG program should be increased for FY23 so that institutions
of higher education to support a greater percentage of our Nation's
lowest-income students. For FY22, NCAN respectfully requests that
Congress fund the SEOG program at a total of $1.09 billion.
Sixty-four percent of today's students work while enrolled in
school. The Federal Work-Study (FWS) program allows students to work in
a flexible environment, learn important skills, and minimize the amount
of time they spend commuting between work and campus. For FY23, NCAN
respectfully requests that Congress increase the FWS program budget for
a total of $1.52 billion.
Federally Funded College Access Programs--TRIO and GEAR UP
High school seniors, and especially students from low-income
backgrounds, require a variety of programs to help assist as they
strive to pursue education beyond high school. NCAN's members serve
roughly two million students annually in their path towards attainment.
To reach the students who need crucial assistance services, our members
build important partnerships with TRIO and GEAR UP programs. NCAN
respectfully requests that Congress continue its investment in
federally funded college access programs at the amounts requested by
their communities: $1.307 billion for TRIO and $435 million for GEAR
UP.
Corporation for National and Community Service (CNCS)
For every dollar spent on national service, our Nation sees a major
return on investment. Service plays an important role in the college
access movement. Many of NCAN's largest members can maximize their
impact for underrepresented students by participating in the AmeriCorps
public-private partnership. Continuing support for CNCS, and
specifically the AmeriCorps program, will enable additional volunteers
to work with low-income students, students of color, and students who
are first in their family to attend college. NCAN respectfully requests
of that the Corporation for National and Community Service and the
AmeriCorps program receive $1.34 billion and $557 million,
respectively, for FY23.
Thank you for this opportunity to provide our funding priorities
for fiscal year 2023. Through continued supports--both financial and
programmatic--our country can work together to close gaps in
attainment, where a low-income student is about half as likely to
complete a postsecondary degree or credential as a high-income student.
NCAN appreciates your leadership in Congress to support these important
Federal programs.
Sincerely.
[This statement was submitted by Kim Cook, Chief Executive Officer,
National College Attainment Network .]
______
Prepared Statement of the National Congress of American Indians
On behalf of the National Congress of American Indians (NCAI),
thank you for this opportunity to provide testimony on fiscal year 2023
funding for the Department of Labor (DOL), Department of Health and
Human Services (HHS), Department of Education (Ed.), and the
Corporation for Public Broadcasting (CPB).
Indian Country is socially, economically, and geographically
diverse. Most Tribal lands are held in trust by the United States or
have been completely taken from our Nations through the long history of
Federal Indian policies of removal, assimilation, reorganization, and
termination. As a result, we do not have the same asset base or tax
base as other governments and our government revenue structure is
different; Tribal Nations rely on Federal Government funding and on
economic development. Policies failing to consider that we do not have
the same capital equity as other American governments cause Federal
programs and initiatives to be less successful than intended. Federal
spending policy for programs that benefit Native Americans must be
considered holistically across appropriations subcommittee
jurisdictions and recognize the unique historical and political
position forced upon Tribal Nations. The United States must be bold and
look at new and unrealized solutions to Federal taxing and spending
related to its trust and treaty obligations to Tribal Nations.
After the COVID-19 pandemic struck, the Federal Government listened
to Tribal Nations' collective voice and provided the largest single
infusion of Federal funding for Native Americans in U.S. history.\1\
Funding from the American Rescue Plan Act embodied a simple and
effective strategy to maximize the investment: empowering Tribal
Nations to design their own solutions. This funding was not a panacea,
particularly given that Tribal Nations began the pandemic on unequal
footing compared to State and local governments, but it was historic,
necessary, and essential. This historic inclusion in Federal spending
for Indian Country must be the norm, and not the exception.
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\1\ Eric C. Henso et. al, ``Assessing the U.S. Treasury
Department's Allocations of Funding for Tribal Governments under the
American Rescue Plan act of 2021'', Harvard Project on American Indian
Economic Development & Native Nations Institute, Policy Brief No. 7
(November 3, 2021), available at: https://ash.harvard.edu/files/ash/
files/assessing_the_u.s.--treasury_
departments_allocations_of_funding_for_tribal_governments.pdf?m=16359725
21.
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department of labor
Beginning in February 2022, the Bureau of Labor Statistics
published monthly data on American Indian and Alaska Native (AI/AN)
employment, using data that was previously available through the Census
Bureau's Current Population Survey. The newly published data reveals a
labor market that would be considered catastrophic if it were
representative of the full U.S. economy, with an unemployment rate more
than double that of the Nation's topline unemployment rate.\2\ Indian
Country is still recovering from the effects of the pandemic on the
labor market, with unemployment rates reaching 28.6 percent during the
peak of the pandemic fallout-an amount comparable to the National
unemployment rate during the Great Depression.\3\ As of January 2022,
the unemployment rate for Native Americans was still greater than the
peak unemployment rate for white workers during the pandemic.\4\
---------------------------------------------------------------------------
\2\ Robert Maxim, Randall Akee, and Gabriel R. Sanchez, For the
first time, the government published monthly unemployment data on
Native Americans, and the picture is stark, available at: https://
www.brookings.edu/blog/the-avenue/2022/02/09/despite-an-optimistic-
jobs-report-new-data-shows-native-american-unemployment-remains-
staggeringly-high/#:\ :text=Prior%20to%20
the%20pandemic%2C%20Native,unemployment%20during%20the%20Great%20Depress
ion, Accessed: May 4, 2022.
\3\ Id.
\4\ Id.
---------------------------------------------------------------------------
Even when controlling for a host of factors, the Brookings
Institute posits that structural racism in the U.S. economy affects AI/
AN access to education and attainment as well as employment
opportunities.\5\ As traditionally place-based peoples with strong
cultural and historical ties to the land, AI/ANs tend to not move away
even when the economy goes bad. This means that the structural
impediments to economic growth are focused and exacerbated on Tribal
lands, underscoring the importance of DOL employment and training
programs for AI/ANs. Unfortunately, spending for Native American
programs within DOL represents 0.5 percent of total regular DOL budget
authority in the fiscal year 2022 Omnibus, with an increase of less
than 4.8 percent over 5 years-an amount that drastically fails to keep
pace with inflation for that same period according to the Bureau of
Labor Statistics' own inflation calculator. With Federal investment
metrics such as these, it is no surprise that the labor market in
Indian Country remains in a State of catastrophe by national standards,
which dampens local, regional, and national U.S. economic productivity.
---------------------------------------------------------------------------
\5\ Id.
---------------------------------------------------------------------------
This subcommittee can correct this investment deficiency by
providing at least $61.5 million for DOL Native American Programs,
$15.5 million for Tribal grants within YouthBuild Activities, and not
less than $250 thousand to DOL Department Management for the
Secretary's Native American Employment and Training Council, holding
Native American Program resources harmless. Additionally, DOL has
failed to make meaningful headway on the American Indian Population and
Labor Force Report, required by Congress to be submitted every 2 years,
despite several Tribal consultations on the need for it and meaningful/
useful data. Instead, in February 2022, the DOL Employment and Training
Administration issued a 96-page report on the difficulty of compiling
the report and opted to further pass the buck on to the Bureau of Labor
Statistics--wasting time and taxpayer resources while simultaneously
failing to meet Congress' mandate. DOL must be directed to execute this
long overdue and meaningful report in consultation and collaboration
with Tribal Nations, and DOL resources must be conditioned on the
completion of this unfulfilled obligation. Executive Branch agencies
should be held accountable to fulfill Congressional and U.S. Code
requirements--not waste Federal resources meant to support Indian
Country to issue reports on why projects are difficult. DOL must work
with Tribal Nations and across Federal agencies to develop the report
Indian Country needs and deserves to support Tribal solutions.
department of health and human services
As Congress declared in the Indian Health Care Improvement Act (25
U.S.C. Sec. 1602), in order to fulfill its trust responsibility and
treaty obligations, the U.S. must achieve the highest health care
levels for AI/ANs and provide the requisite resources. While the Indian
Health Service (IHS) is the primary source of Federal funds for
healthcare for AI/ANs, annual appropriations for the IHS have never
exceeded 50 percent of the demonstrated patient need. By cross-
referencing Office of Management and Budget data with Appropriations
Committee reports, regular appropriations for HHS in fiscal year 2022
for the benefit of Native Americans represents 0.68 percent of the
total budget authority provided by Appropriations Committees. When this
amount is controlled to remove IHS (funded within the jurisdiction of
the Interior, Environment, and Related Agencies subcommittee), this
subcommittee's investment in Indian Country is an appalling 0.15
percent of its regular budget authority appropriated for fiscal year
2022.
This (lack of) investment tells a vivid story of health and
wellbeing in Indian Country and of Congress' priorities for health and
wellbeing when controlling for all competing interests within this
subcommittee's jurisdiction. It tells a story of how Congress values
(or fails to value) its treaty and trust obligations and the human
lives that it obligated itself to protect in exchange for the wealth
and bounty that created the most economically prosperous and powerful
country in world history. The ongoing Coronavirus pandemic uniquely
impacted and exacerbated the health conditions of Indian Country, but
AI/ANs began this pandemic already in a health crisis caused by the
United States' chronic underinvestment in its own obligations; by the
promises to its citizens that it broke-that remain broken. Even as we
recover globally from the pandemic, additional emerging issues are
disproportionately impacting Tribal communities. The loss of our loved
ones, our economies, and the devastating effects of isolation with
inadequate infrastructure are causing a mental health crisis across
Indian Country. The rising costs of goods and lingering labor fallout
are affecting early childhood development outcomes. The lack of
adequate communications infrastructure is affecting our educational
attainment. This crisis is not over for our people, even as we face new
crises on practically every front.
The United States' trust and treaty obligations to Tribal Nations
and their citizens cannot be singularly siloed into one bureau or
agency. IHS services are largely limited to direct patient care,
leaving little, if any, funding available for public health initiatives
such as disease research and prevention, early childhood development
and welling education, injury prevention, and promotion of healthy
lifestyles. HHS administers a wide array of health and wellbeing
programs for Indian Country, including child and family welfare, mental
health services, education, and cultural preservation. This
subcommittee can address these compounded crises by providing not less
than $505.98 million for Tribal grants within Children and Families
Services Programs-including $349.98 million for Programs for Children,
Youth and Families and not less than $156 million for Native American
Programs (Administration for Native Americans); $203.52 million for
Tribal grants within the Substance Abuse and Mental Health Services
Administration; $111.23 million for Tribal grants within the
Administration for Community Living; $17.41 million for Tribal grants
within Promoting Safe and Stable Families; and $14.01 million for the
Tribal Home Visiting Program.
department of education
The U.S. Department of Education funds promote the success of
Native students in public schools, as well as Bureau of Indian
Education-funded and tribally controlled schools and Tribal Colleges
and Universities. An educated citizenry serves as a catalyst to boost
prosperity and growth through a more competitive workforce, which can
attract new businesses, stimulate Tribal economies, and foster
entrepreneurial endeavors in the community. Tribal education is
uniquely reliant on the Federal appropriations process because
disparities in tax jurisdictions limit Tribal governments' ability to
raise revenue in ways other governments take for granted. A growing
body of research finds important positive connections between the
linguistic and cultural environments in which Native American children
grow and their outcomes. Congress must provide the resources to fulfill
its trust and treaty obligations to Native Americans through culturally
appropriate education.
In order to fulfill these obligations and improve on AI/AN
education and attainment, this subcommittee should provide not less
than $2.095 billion for Indian Education programs--including $2 billion
for Tribal Local Education Agencies (LEAs); $2 billion for Impact Aid
for the benefit of Native students; $20 million for Bureau of Indian
Education school assessment maintenance; $94.2 for Higher Education
Tribal programs--including $45 million for Tribal Colleges and
Universities and $15 million for Tribally Controlled Postsecondary
Vocational/Tech Institutions; and $76 million for the American Indian
Vocational Rehabilitation Services Program.
corporation for public broadcasting
Native radio stations are critical to the communities they serve
because they are often the first source of emergency reporting and
information for Tribal citizens. Public broadcasters use datacast
technology for public alert and warning systems, homeland security, and
other public safety purposes. In addition to providing emergency
information, Native radio stations provide vital access to healthcare
information and other services specific to the Tribal communities they
serve. Often, the only forum where Native stories and issues are
broadly heard are on Native radio stations.
Since 1976, the Corporation for Public Broadcasting's (CPB) 2-year
advance appropriations have served as a Congressional strategy to
protect public media from any immediate political pressure. Community
Service Grants (CSGs) account for approximately 70 percent of CPB's
appropriation, which directly funds 1,300 local public television and
radio stations--including 36 Native radio stations. CPB also funds the
essential system-wide station support services provided by Native
Public Media, Inc., and the content production and satellite
programming distribution by Koahnic Broadcast Corporation. This funding
ensures that Native radio stations stay on-air and provide broadcast
services to some of the most rural and remote locations in the United
States.
Congress should provide at least $7 million (advance appropriation
for fiscal year 2025) to fund American Indian and Alaska Native radio
stations, at least $500,000 (advance appropriation for fiscal year
2025) for Native Public Media, and at least $500,000 (advance
appropriation for fiscal year 2025) for the Koahnic Broadcast
Corporation.
conclusion
Tribal Nations are uniquely reliant on the Federal Government to
fulfill its promises made in exchange for the land that created the
foundation of the bounty and wealth of the United States. Our people
have paid for every penny obligated to Indian Country hundreds of times
over by providing this Nation with our land. In order to uphold this
Nation's promises to its people, it must first uphold its promises to
this land's First Peoples. We expect to continue to be treated as
sovereign nations with governmental parity. We must continue down that
path of Nation-to-Nation growth, and only then will all of our people
be able to fully flourish.
[This statement was submitted by Dante Desiderio, CEO, National
Congress of American Indians.]
______
Prepared Statement of the National Council for Community and Education
Partnerships
Distinguished members of the Senate Labor-Health and Human
Services-Education Appropriations subcommittee, thank you for the
giving me the opportunity to provide testimony on the profound impact
that the Gaining Early Awareness and Readiness for Undergraduate
Programs (GEAR UP) initiative has had on my life. My name is Mark
Figueroa, and it is my honor and pleasure to be writing this
testimonial on behalf of GEAR UP alumni and over half a million GEAR UP
students across the country. Given the program's return on investment,
I urge the committee to appropriate $435,000,000 for GEAR UP in fiscal
year 2023 to support an additional 80,000 students across our country
so that they, too, can have the support I received in GEAR UP.
As you know, GEAR UP provides 6- or 7-year grants to States and
partnerships comprised of K-12, higher education, and community-based
organizations that strengthen pathways to college and careers in low-
income communities. GEAR UP exposes students, and their families,
starting in the 7th grade to comprehensive interventions that follow
them through high school graduation and optionally, through the first
year of postsecondary education. GEAR UP uses early and sustained
interventions to ensure that students are successful in rigorous
courses, are knowledgeable about the steps necessary to prepare for
life beyond high school, and ultimately enroll in a high-quality
certificate, associates', or bachelors' degree program that suits their
goals. In the most recent year in which we had a large class of
graduating seniors, the postsecondary enrollment rates of GEAR UP
students were over 31 percent higher than low-income students
nationally.\1\ Considering that GEAR UP achieves this critical goal at
a cost of approximately $645 per student, per year, I strongly believe
that the investment in GEAR UP pays significant dividends. GEAR UP is a
powerful catalyst for sustained community improvement.
---------------------------------------------------------------------------
\1\ U.S. Department of Education (2016). fiscal Year2017 Department
of Education Justifications of Appropriation Estimates to the Congress:
Higher Education (Volume II). Retrieved from: https://www2.ed.gov/
about/overview/budget/budget17/justifications/index.html.
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I grew up in a place in Eastern Washington State in a region known
as the Tri-Cities. This part of the country is fueled by passionate
Latinx immigrant migrant families working in produce fields across the
State of Washington. With long days and hard work, preparing for a
higher education can be challenging for many. As a first-generation
migrant student and the eldest of six in my family, post-secondary
education seemed like a very distant, unknown land with no clear path
toward it.
However, participating in the GEAR UP program helped me actualize
my dreams of a post-secondary education through mentors, college &
career fairs, FAFSA nights, and college admissions workshops. Being the
first in my family to pursue a higher education, my parents and I had
many questions. It is a daunting process, especially if done alone.
Nevertheless, GEAR UP was there to support us, and walk with us all the
way. Because of GEAR UP, I was admitted and graduated from Washington
State University. With these experiences, and the confidence that GEAR
UP gave me, I was able to develop strong leadership skills, community
connections, and discovered all the ways to give back to my community.
During my time at Washington State University, I connected with other
first-generation migrant students and encouraged them to follow their
dreams. I joined the only Aztec-based brotherhood in the Pacific
Northwest, I served in student government, and helped lead a student
ministry at the intersection of faith and culture. Having led the way,
with the support of GEAR UP, I am now there for my parents and my five
sisters as they navigate the college-going process.
Additionally, I was inspired by my experiences and the experiences
of others with stories similar to mine, and I was able to bring
awareness to various issues affecting college students from all walks
of life. I currently volunteer with local civic engagement
organizations to encourage members of my community to elevate their
voices. I am a secondary education teacher, I coach soccer at the same
high school where GEAR UP supported me, and I am working towards a
master's degree in theology. I can attest to the truth that GEAR UP
does work.
For me, none of this would have been possible without the guidance
of the GEAR UP program. Through my own achievements in attending
postsecondary education, I can see that generational barriers in my
family have been removed for future generations and they may find the
same successes that I have through education. While the support that
GEAR UP provided me was truly priceless, the only way that other
students will be able to access the educational experiences I had
because of GEAR UP, will be to continue to increase funding.
Acknowledging that I am just one of the thousands of families GEAR UP
has positively impacted highlights the impact of the GEAR UP program.
As you take on the work of preparing for the fiscal year 2023
appropriations, I urge you to consider increasing the investment in the
GEAR UP program to $435,000,000 so that 80,000 more students just like
me can benefit from the program as I did. Thank you to the committee
for taking the time to read my testimony.
______
Prepared Statement of the National Council for Diversity in Health
Professions
Chairwoman Murray, Ranking Member Blunt, and distinguished members
of the subcommittee, thank you for the opportunity to submit this
statement for the record on behalf of the National Council for
Diversity in the Health Professions (NCDHP). I am Dr. Wanda Lipscomb
and I serve as President of the NCDHP and Director of the Center of
Excellence for Diversity in Medical Education at Michigan State
University. NCDHP was established in 2006 and is composed of
institutions that are either currently or formerly distinguished as a
``Center of Excellence'' through the Health Resources and Services
Administration's (HRSA)'s Centers of Excellence (COE) program or are a
current or former recipient of the Health Careers Opportunities Program
(HCOP) grant, now known as the National HCOP Academies program. Every
member institution within the council is committed to advancing
pipeline programs and programmatic activity that leads to diversity in
the health professions.
The National Council for Diversity in Health Professions (NCDHP) is
comprised of institutions with Centers of Excellence (COE) and Health
Careers Opportunity Program (HCOP) grants funded by the Health
Resources and Services Administration under the Title VII Health
Professions Training Programs. COE/HCOP grantees are in health
professions education and other institutions which excel in the
development of educational pipeline programs for individuals from
minority and disadvantaged backgrounds, and in the improvement of the
quality of health care delivery to medically underserved communities. I
am proud to put forth the following recommendations for the fiscal year
(FY) 2023 appropriations process:
Minority health professional development is a cost-effective and
long-term mechanism of improving health care and decreasing health
disparities in minority and underserved communities. 50-80% of Under-
Represented Minority (URM) physicians and other health professionals
practice in shortage areas serving minority patients. Minority health
professionals possess the cultural, experiential and linguistic skills
needed to provide cost-effective health care to minority communities.
Minority students identified, recruited, supported, admitted, and
trained in the health professions in this decade will provide services
into the 2060s and 2070s.
hrsa centers of excellence (coe) recommendation
COE award recipients serve as innovative resource and education
centers to recruit, train, retain and graduate URM students and faculty
at health professions schools. Programs improve information resources,
clinical education, curricula, and cultural competence as they relate
to minority health issues and social determinants of health. These
award recipients also focus on facilitating faculty and student
research on health issues particularly affecting URM groups. The goal
of the program is to effectively deliver health care to underserved
communities.
NCDHP recommends $47.42 million for the COE program in Fiscal Year
2023.
hrsa health career opportunities program (hcop) recommendation
HCOP provides opportunities for colleges and community-based health
professions training and promotes the recruitment of qualified students
and non-traditional students like veterans from disadvantaged
backgrounds into health and allied health professions programs. As a
major Federal pipeline program into the health professions, HCOP
improves the acceptance, retention and matriculation rates of
participating students by implementing tailored enrichment programs
designed to address their academic and social needs.
NCDHP recommends $47.95 million for the HCOP program in Fiscal Year
2023.
funding justification and appropriations history for hrsa's hcop and
coe programs
--The Association of American Medical Colleges projects that in the
U.S. there will be a shortage of nearly 120,000 primary
care physicians by the year 2030. Looming workforce
shortages exist not only in medicine, but also in
dentistry, public health, physician assistants and other
health professions. If not adequately addressed, our Nation
will continue to fall short in addressing the needs of
medically underserved communities as most recently exposed
by the COVID-19 pandemic.
--We are seeking to restore COE and HCOP funding to FY 2005 levels.
For FY 2006 the COE appropriation was cut by 65% from $33M
to only $12M. Similarly HCOP was cut by 89% to only $4M.
Adjusting for inflation COEs $33M in 2005 dollars would be
$45M in 2021 dollars. HCOPs $35M in 2005 would now be $47M.
--The number of COE grantees dropped from 34 (in 2005) to 19 (in
2020), and the number of HCOP grantees dropped from 74 (in
2005) to 22 (in 2020). These programs have not fully
recovered. Presently there is not enough funding in either
program to support a new competition-only to maintain
existing programs. A significant increase is needed in COE
and HCOP to increase the number of Latino, Black, American
Indian and disadvantaged students recruited, admitted and
graduated as culturally competent physicians and other
health professionals who have a high likelihood of
practicing in underserved minority communities. For
example, with increased funding, COE could launch an
initiative to increase the number of post-baccalaureate
slots and programs that enroll previously rejected
applicants in 1-year programs, with 90% being accepted to
medical school, of which >95% will graduate as physicians.
As you begin the FY 2023 process, NCDHP asks that you further
prioritize Title VII health professions training programs. Chairwoman
Murray and Ranking Member Blunt, please allow me to express my
appreciation to you and the members of this subcommittee. With your
continued help and support, NCDHP member institutions are keeping
course to overcome health workforce and health disparities. Thank you
for your time and consideration of these requests. We look forward to
working with the subcommittee to prioritize the health professions
programs in FY 2023 and the future.
[This statement was submitted by Wanda Lipscomb, Ph.D., President,
National Council for Diversity in the Health Professions.]
______
Prepared Statement of the National Council of Urban Indian Health
My name is Francys Crevier, I am Algonquin and the Chief Executive
Officer of the National Council of Urban Indian Health (NCUIH). On
behalf of NCUIH, the National advocate for health care for the over 70
percent of American Indians and Alaska Natives (AI/ANs) living off-
reservation and the 41 Urban Indian Organizations (UIOs) that serve
these populations, I would like to thank Chairwoman Murray, Ranking
Member Blunt, and Members of the subcommittee for the opportunity to
submit public witness testimony regarding Fiscal Year (FY) 2023
appropriations. We respectfully request the following:
--Fully fund the Indian Health Service (IHS) at $49.8 billion and
Urban Indian Health at $949.9 million for FY23 (as requested by
the Tribal Budget Formulation Workgroup)
--Advance appropriations for IHS until mandatory funding is enacted
--Increase funding for Electronic Health Record Modernization
--Increase funding to $30 million for Good Health and Wellness in
Indian Country (GHWIC)
--Permanently reauthorize Native Connections (Tribal Behavioral
Health Grant)
--Include urban Indians in language for all health programs
--Include UIOs in critical opioid grants
Fully fund the Indian Health Service at $49.8 billion and Urban Indian
Health at $949.9 million for FY23 (as requested by the Tribal
Budget Formulation Workgroup)
While your leadership was instrumental in providing the greatest
investments ever for Indian health and urban Indian health, it is
important that we continue in this direction to build on our successes.
The average health care spending is around $12,000 per person, however,
Tribal and IHS facilities receive only around $4,000 per patient. UIOs
receive just $672 per IHS patient--that is only 6 percent of the per
capita amount of the National average. That's what our organizations
must work with to provide health care for urban Indian patients.
The Federal trust obligation to provide health care to Natives is
not optional, and we thus request Congress honor the Tribal Budget
Formulation Workgroup (TBFWG) FY23 recommendations of $49.8 billion for
IHS and $949.9 million for urban Indian health. That number is much
greater than the FY21 enacted amount of $63.7 million, which truly
demonstrates how far we have to go to reach the level of need for urban
Indian health. At an IHS Area Report meeting where Tribal leaders
presented their budget requests, one Oklahoma Tribal leader stated that
``There are inadequate levels of funding to address the rising urban
Indian population.'' Congress must do more to fully fund the IHS in
order to improve health outcomes for all Native populations at the
amount requested.
In 2018 the Government Accountability Office (GAO-19-74R) reported
that from 2013 to 2017, IHS annual spending increased by roughly 18
percent overall, and roughly 12 percent per capita. In comparison,
annual spending at the Veterans Health Administration (VHA), which has
a similar charge to IHS, increased by 32 percent overall, with a 25
percent per capita increase during the same period. Similarly, spending
under Medicare and Medicaid increased by 22 percent and 31 percent
respectively. In fact, even though the VHA service population is only
three times that of IHS, their annual appropriations are roughly 13
times higher.
Currently, the entire Eastern seaboard is without any full-
ambulatory UIOs due to lack of funding. The IHS has deemed the two
remaining UIOs on the East Coast to be outreach and referral only, with
a combined less than two-million-dollar budget. Unfortunately, the
pandemic has shown that two outreach and referral UIOs to serve all
urban Indians on the entire East Coast of the country is a failure to
uphold the Federal trust obligation. It is evident the UIO line item is
insufficient to allow IHS to authorize our East Coast UIOs to open
fully operational clinics. Native American Lifelines is actually two
programs run in both Boston and Baltimore with an annual budget for
both cities of $1.6 million. During the height of the pandemic, that
meant Native people living in urban areas on the East Coast had to go
back to reservations to get their vaccine to take advantage of the IHS
authority that would give them the vaccine early and hopefully not
become a mortality statistic.
The Federal Government owes a trust responsibility to Tribes and
AI/ANs that is not restricted to the borders of reservations. Funding
for Indian health must be significantly increased if the Federal
Government is, to finally, and faithfully, fulfill its trust
responsibility.
Advance Appropriations for IHS Until Mandatory Funding is Enacted
The Indian health system, including IHS, Tribal facilities and
UIOs, is the only major Federal provider of health care that is funded
through annual appropriations. If IHS were to receive mandatory funding
or, at the least, advance appropriations, it would not be subject to
the harmful effects of government shutdowns, automatic sequestration
cuts, and continuing resolutions (CRs). When IHS is funded through a
CR, the IHS can only expend funds for the duration of a CR, which
prohibits longer term purchases, disrupts the contracts that allow UIOs
to provide health care, and quite literally puts lives at risk. Because
UIOs must rely on every dollar of limited Federal funding they receive
to provide critical patient services, any disruption has significant
and immediate consequences.
NCUIH supports the President's proposal in the FY 2023 Budget to
fund the IHS through mandatory appropriations and to exempt IHS from
proposed law sequestration. The 10 years of appropriated mandatory
funding in the FY 2023 Budget will ensure predictability that will
allow the I/T/U system to engage in long-term and strategic planning.
The lack of consistent and clear funding creates significant barriers
on the already underfunded IHS system. Until authorizers act to move
IHS to mandatory funding, we request that Congress provide advance
appropriations to the Indian health system to improve certainty and
stability.
Increase funding for Electronic Health Record Modernization
We request your support for the Indian Health Service's (IHS)
transition to a new electronic health record (EHR) system for IHS and
UIOs. As EHR modernization moves from planning to fruition, it is
vitally important that appropriations continue to increase as
appropriate to provide for its success. NCUIH Requests the committee to
support this transition with $355.8 million in FY23 appropriations.
NCUIH is also supportive of the inclusion of report language suggested
by members of Congress in a letter to the House appropriations
committee.\1\
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\1\ https://files.constantcontact.com/a3c45cb9201/562eb81b-dee4-
48b8-8519-69bcbebb0ff2.pdf?rdr
=true.
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CDC: Good Health and Wellness in Indian Country--$30 Million 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 27 Tribes, Tribal organizations,
and UIOs to improve chronic disease prevention efforts, expand physical
activity, and reduce commercial tobacco use. The FY 2023 President's
Budget proposes maintaining at current levels of $22 million. NCUIH
requests the Committee support the GHWIC program by increasing funding
to $30 million for FY 2023.
SAMHSA: Tribal Behavioral Health Grant (Native Connections)--$23.2
Million
The Tribal Behavioral Health Grant (known as Native Connections) is
a 5-year grant program that helps American Indian and Alaska Native
communities identify and address the behavioral health needs of Native
youth. The program supports grantees in reducing suicidal behavior and
substance use among Native youth up to age 24, easing the impacts of
substance use, mental illness, and trauma in Tribal communities, and
supporting youth as they transition into adulthood.
As of June 2021, SAMHSA had awarded 242 5-year grants to eligible
AI/AN entities including UIOs. The program is up for reauthorization in
2022 and the FY23 President's budget has a request of $23.2 million for
the program, an increase of $2.5 million from the FY 2022 Annualized
Continuing Resolution. NCUIH requests the committee support addressing
the behavioral health needs of our Native communities by reauthorizing
this critical program.
Include Urban Indians in Language for All Health Programs
The Declaration of National Indian Health Policy in the Indian
Health Care Improvement Act States that: ``Congress declares that it is
the policy of this Nation, in fulfillment of its special trust
responsibilities and legal obligations to Indians to ensure the highest
possible health status for Indians and urban Indians and to provide all
resources necessary to effect that policy.'' In fulfillment of the
National Indian Health Policy, the Indian Health Service funds three
health programs to provide health care to AI/ANs: IHS sites, tribally
operated health programs, and Urban Indian Organizations (referred to
as the I/T/U). Unfortunately, this system has been hampered by decades
of chronic underfunding. Additionally, while the majority of the Native
population resides in urban areas, only 1 percent of the entire Indian
health budget is provided for urban Indian health.
When urban Indians are not specifically mentioned in programmatic
language they are most often excluded from participating in such
programs. Many programs in the Health and Human Services appropriations
bills include language for Indian Tribes and Tribal organizations, but
not for urban Indian organizations. Urban Indian Organizations are not
considered Tribal organizations, which is a common misconception.
Therefore, UIOs must be explicitly included to receive funding. UIOs
also do not have access to other IHS line items like IHS and Tribal
facilities and do not receive hospitals and health clinics money,
purchase and referred care dollars, or IHS dental services dollars, and
are not eligible for the IHS facilities fund.
As one advocate stated, ``The language everywhere has to include
the word 'urban'--urban Indian or urban Native. They have to say it,
they have to write it and then it'll reach a critical mass, eventually.
Because they don't get it, you know. We're just invisible.'' \2\
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\2\ https://www.usatoday.com/story/news/politics/2022/03/07/
opioids-native-americans-funding/9380063002/?gnt-cfr=1.
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Include UIOs in Critical Opioid Grants
UIOs have repeatedly been left out of funding designed to help AI/
AN communities address the opioid crisis. To address the opioid
overdose epidemic in Indian Country by increasing access to culturally
appropriate and evidence-based treatment, Congress provided funding for
Tribal Opioid Response grants. NCUIH has long advocated for UIOs to be
added to the Substance Abuse and Mental Health Services
Administration's (SAMHSA) State Opioid Response (SOR) grants given the
extent of the impact of the opioid epidemic on all AI/ANs regardless of
residence. Since FY 2018, Congress has enacted set asides in opioid
response grants to help Native communities address this crisis.
However, it was only available for Tribes and Tribal organizations,
meaning UIOs working against the same problem are left without the
resources necessary to reach the highest health status for all AI/ANs
as required of the Federal Government. This is a failure of equity.
Without the necessary funding to address health crises in Indian
Country, urban AI/AN people will again be left out of the equation.
Last Spring, Congress introduced the State Opioid Response Grant
Authorization Act of 2021 (H.R. 2379), which included a 5 percent set-
aside of the funds made available for each fiscal year for Indian
Tribes, Tribal organizations, and UIOs to address substance abuse
disorders through public health-related activities such as implementing
prevention activities, establishing or improving prescription drug
monitoring programs, training for health care practitioners, supporting
access to health care services, recovery support services, and other
activities related to addressing substance use disorders. NCUIH worked
closely with Congressional leaders to ensure the inclusion of urban
Indians in the funding set-aside outlined in this bill, which
eventually passed the House on October 20, 2021. Despite this effort,
UIOs were removed from the SOR Grant reauthorization, which saw a $5
million increase (9 percent increase from FY 2021), included in the
recently passed FY 2022 Omnibus (H.R. 2471). The final language in the
Omnibus only listed ``Indian Tribes or Tribal organizations'' as
eligible and did not use the language from H.R. 2379. When UIOs are not
explicitly stated as eligible entities, we are excluded from critical
resources and grants, which is a violation of the trust obligation.
We were disappointed to yet again be left out of this key resource
as our communities are plagued by the opioid crisis. Inclusion in this
program could have enabled UIOs to expand services or workforce or to
help address the catastrophic impacts of the opioid epidemic in Indian
Country. We urge you to work to ensure funding designated to help AI/AN
communities have the proper language to prevent UIOs from lacking
access to these critical funds.
Conclusion
These requests are essential to ensure that urban Indians are
properly cared for, both during this crisis and in the critical times
following. It is the obligation of the United States government to
provide these resources for AI/AN people residing in urban areas. This
obligation does not disappear in the midst of a pandemic, instead it
should be strengthened, as the need in Indian Country is greater than
ever. We urge Congress to take this obligation seriously and provide
UIOs with all the resources necessary to protect the lives of the
entirety of the AI/AN population, regardless of where they live.
______
Prepared Statement of the National Eczema Association
summary of fiscal year 2023 appropriations recommendations
_______________________________________________________________________
--Provide the National Institutes of Health (NIH) with at least $49
billion in funding, a $3.5 billion increase over FY 2022.
--Provide proportional funding increases for the individual NIH
institutes and centers that manage the eczema portfolio,
most notably the National Institute of Allergy and
Infectious Diseases (NIAID) and the National Institute of
Arthritis and Musculoskeletal and Skin Diseases (NIAMS).
--Provide additional, distinct funding for the emerging Advanced
Research Projects Agency for Health (ARPA-H) at NIH, which
would facilitate implementation of this important program
without supplanting ongoing NIH research activities.
--Provide the Centers for Disease Control and Prevention (CDC) with
$11 billion in funding, an increase of $2.55 billion over FY
2022.
--Provide $6 million in funding for the Chronic Disease Education
and Awareness Program at CDC, an increase of $3 million
over FY 2022.
_______________________________________________________________________
Thank you for the opportunity to present testimony on behalf of the
National Eczema Association (NEA) and to share the experiences of the
eczema community. Chairwoman Murray, Ranking Member Blunt, and
distinguished members of the subcommittee, thank you for continuing to
invest in medical research and public health programs through the FY
2022 omnibus appropriations package. Recent years of funding increases
have led to notable advances in eczema research and new opportunities
for meaningful public health collaborations. As you work with your
colleagues on FY 2023 appropriations, please maintain the commitment to
increase funding for medical research and public health programs that
serve eczema patients and raise awareness of the wide-ranging impacts
on affected individuals and their families.
about the national eczema association
The National Eczema Association is the largest patient advocacy
organization dedicated solely to all forms of eczema, including atopic
dermatitis (AD), the most common and chronic form of eczema. NEA
represents the voice of over 31 million affected American adults,
children, and their families, and is the driving force for an eczema
community fueled by knowledge, strengthened through collective action
and propelled by the promise for a better future.
about eczema and atopic dermatitis
Eczema is the name for a group of conditions that cause the skin to
become itchy, inflamed, and have a rash-like appearance. Atopic
dermatitis (AD) is the most common type of eczema, affecting more than
9.6 million children \1\ and about 16.5 million adults \2\ of all races
and ethnicities \3\ in the United States. We are entering a new era of
care for eczema patients with several n FDA-approved groundbreaking
therapies for AD that have the potential to be transformative in their
ability to ease the numerous physical, psychological, and quality of
life burdens of eczema.\4,5,6\
---------------------------------------------------------------------------
\1\ Shaw TE, Currie GP, Koudelka CW, Simpson EL. Eczema prevalence
in the United States: data from the 2003 National Survey of Children's
Health. J Invest Dermatol. 2011;131(1):67-73.
\2\ Chiesa Fuxench ZC, Block JK, Boguniewicz M, et al. Atopic
Dermatitis in America Study: A Cross-Sectional Study Examining the
Prevalence and Disease Burden of Atopic Dermatitis in the US Adult
Population. J Invest Dermatol. 2019;139(3):583-590.
\3\ Hanifin JM, Reed ML, Eczema Prevalence and Impact Working
Group. A population-based survey of eczema prevalence in the United
States. Dermatitis. 2007;18(2):82-91.
\4\ Drucker AM, Wang AR, Li WQ et al. The burden of Atopic
Dermatitis: Summary of a report for the National Eczema Association. J
Invest Dermatol. 2017;137(1):26-30.
\5\ Chiesa Fuxench ZC, Block, JK, Boguniewicz M, et al. Atopic
dermatitis in America study: A cross-sectional study examining the
prevalence and disease burden of atopic dermatitis in the US adult
population. J Invest Dermatol.2019;139(3):583-590.
\6\ Silverberg J, Gelfand J, Margolis D et al. Patient burden and
quality of life in atopic dermatitis in US adults. Ann Allergy Asthma
Immunol. 2018;121(3):340-347.
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Research in this area is largely led by the National Institutes of
Health (NIH) through the National Institute on Arthritis and
Musculoskeletal and Skin Diseases (NIAMS) and the National Institute of
Allergy and Infectious Diseases (NIAID). Much more basic,
translational, and clinical research is needed to further the
scientific understanding of all forms of eczema, as recent
breakthroughs have led to the advent of potential drug and biologic
therapies for atopic dermatitis. However, despite life-changing
therapeutic advances, these novel treatment options are presenting
emerging coverage, access, and out-of-pocket cost barriers for the
diverse community. Public health activities are also relatively modest
with meaningful opportunities for enhanced surveillance, public
awareness, and healthcare provider education.
quick facts
--31 million people in America are living with eczema.\7,8\
---------------------------------------------------------------------------
\7\ Hanifin JM, Reed ML, Eczema Prevalence and Impact Working
Group. A population-based survey of eczema prevalence in the United
States. Dermatitis. 2007;18(2):82-91.
\8\ Silverberg JI, Hanifin JM. Adult eczema prevalence and
associations with asthma and other health and demographic factors: a US
population-based study. J Allergy Clin Immunol. 203;132(5)1132-1138.
---------------------------------------------------------------------------
--The annual economic burden of AD (AD) is estimated to be over $5
billion.\9\
---------------------------------------------------------------------------
\9\ Drucker AM, Wang AR, Li WQ, Sevetson E, Block JK, Qureshi AA.
The Burden of Atopic Dermatitis: Summary of a Report for the National
Eczema Association. J Invest Dermatol. 2017;137(1)26-30.
---------------------------------------------------------------------------
--55 percent of affected adults with AD currently report inadequate
disease control.\10,11\
---------------------------------------------------------------------------
\10\ Simpson EL, Guttman-Yassky E, Margolis DJ, et al. Association
of Inadequately Controlled Disease and Disease Severity With Patient-
Reported Disease Burden in Adults with Atopic Dermatitis. JAMA
Dermatol. 2018;154(8):903-912..
\11\ Wei W, Anderson P, Gadkari A, et al. Extent and consequences
of inadequate disease control among adults with a history of moderate
to severe atopic dermatitis. J Dermatol. 2018;45(2):150-157.
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nih research
Ongoing congressional support for NIH has allowed for growth of the
NIH annual budget to $42.9 billion in FY 2021 from $34.1 billion in
FY2017. As a result of additional resources and high-quality
investigator-initiated research proposals, the eczema research
portfolio has grown from $32 million in FY 2017 to $46 million in FY
2021. While the eczema portfolio is increasing, so are research costs,
and this current funding translates to approximately $1.42 in annual
research funding per American affected by eczema. More can be done as
gaps in our basic understanding of eczema remain and patients continue
to have limited treatment options. With additional NIH support, more
ambitious projects can be initiated, including timely translational
research and larger clinical studies.
cdc public health efforts
The CDC budget's growth has been modest in recent years and as such
the National Center for Chronic Disease Prevention and Health Promotion
has been working in several priority areas with limited resources.
Presently, and despite a significant U.S. disease prevalence, there are
few public health efforts taking place in eczema. Additional public
awareness, professional education, and related efforts would be of
tremendous benefit to the eczema patient, caregiver and health care
provider communities. The Chronic Disease Education and Awareness
(CDEA) program provides an opportunity to infuse identified disease
areas with additional needed resources and is currently supporting four
novel projects through its first round of funding. Increasing CDEA
funding to $6 million for FY 2023 will facilitate growth in the program
while providing another opportunity to submit for projects in disease
areas, such as eczema, not yet supported by the CDEA program or broader
CDC efforts.
patient stories
Akilah from Pennsylvania: NEA Ambassador and parent of a teenager
living with eczema
Akilah is one of NEA's Ambassadors and she is the parent of a
teenager living with eczema. Her son has severe eczema and was
diagnosed at a young age. As a parent, Akilah worked closely with her
son's doctor to try and find a treatment that would work for him. This
resulted in trying and failing a variety of treatments. Finally, they
learned that a biologic was available but due to step therapy Akilah's
son would have to try and fail methotrexate, which has a plethora of
severe side effects and could damage internal organs. Akilah made the
tough decision to say no to this treatment option and had a frank
conversation with the doctor. Would you put your own child on this drug
when there is a safer treatment available? She feels strongly that
parents shouldn't have to have this conversation and they shouldn't
have to battle with insurance companies to get the right treatment at
the right time for their child. Her doctor helped her find a clinical
trial for her son--and he has since been prescribed the biologic. She
is a strong believer in research and that more treatment options need
to be approved in the eczema space, especially in patients of color.
Christy from Utah: NEA Ambassador and a patient with atopic dermatitis
Christy is one of NEA's Ambassadors and she has atopic dermatitis.
She feels lucky to have had a great relationship with her dermatologist
for the past 10 years. During this time, she has tried and failed a
variety of treatments--until she finally found a treatment that worked
for her. Unfortunately, when she switched jobs, she had a new insurance
company that mandated step therapy. She was then forced to fail on
medications that she's tried before. This made zero sense, both to her
health and to her pocketbook, to have to try medications that were
already documented as failure. Ultimately, she was able to get back on
the right medication, but it took perseverance from her dermatologist
as well as being her own advocate.
[This statement was submitted by Julie Block, President & CEO,
National
Eczema Association.]
______
Prepared Statement of the National Family Planning & Reproductive
Health Association
Dear Chairwoman Murray and Ranking Member Blunt:
As President & CEO of the National Family Planning & Reproductive
Health Association (NFPRHA), I thank you for this opportunity to
provide testimony in support of a fiscal year (FY) 2023 appropriation
of $737 million for the Title X family planning program (Office of
Population Affairs, funded within the Health Resources and Services
Administration account). We are grateful for Chairwoman Murray's
longtime leadership in advocating for family planning, including
proposing a historic $500 million for Title X in the FY 2022 bill, and
urge you to take at least this substantial step forward in this year's
bill.
NFPRHA is a non-partisan, non-profit membership association that
supports the work of family planning providers and administrators,
especially in the safety net. NFPRHA membership includes more than
1,000 entities that operate or fund more than 3,500 health centers that
deliver high-quality family planning education and preventive care to
millions of people every year in the United States. As a leading expert
in publicly funded family planning, NFPRHA conducts and participates in
research; provides subject matter expertise to policymakers, health
care providers, and the public; and offers its members capacity-
building support aimed at maximizing their effectiveness and financial
sustainability as providers of essential health care. Currently, more
than 80 percent of all Title X grantees are NFPRHA members.
Title X is the only Federal program dedicated to providing family
planning services for people with low incomes. Title X-funded health
centers are lifelines in their communities, providing high-quality
reproductive and sexual health care, including cancer screenings,
testing and treatment for sexually transmitted infections,
contraceptive services and supplies, pregnancy testing, and other
essential health care services. These centers offer care to people who
often face severe structural barriers to accessing quality health care,
such as people with low incomes, people who are un- or under-insured,
people of color, people who live and work in rural areas, and LGBTQ
people. Prior to the implementation of the Trump administration's
devastating program rules in 2019, nearly 4,000 health centers in the
Title X network served close to 4 million patients annually.\1\ In
addition, six in 10 women who used Title X-funded health centers in
2016 said that provider was their only source of health care for the
entire year.\2\
---------------------------------------------------------------------------
\1\ Christina Fowler et al, ``Family Planning Annual Report: 2018
National Summary,'' RTI International (August 2019). https://
opa.hhs.gov/sites/default/files/2020-07/title-x-fpar-2018-national-
summary.pdf.
\2\ Meghan Kavanaugh, ``Use of Health Insurance Among Clients
Seeking Contraceptive Services at Title X-Funded Facilities in 2016,''
Guttmacher Institute (June 2018).
---------------------------------------------------------------------------
For FY 2022, Title X is funded at $286.5 million, well below the
$500 million proposed in the Senate bill and the $737 million that
researchers from the Centers for Disease Control and Prevention, the
Office of Population Affairs (OPA), and the George Washington
University determined in 2016 would be needed annually just to provide
family planning care to low-income women without insurance.\3\ We
respectfully request that the Senate match that federally recommended
level of funding, $737 million, for the Title X program in FY23. That
funding level would allow the program to rebuild from crises
experienced in recent years and expand to reach millions more
Americans. We also note that this recommendation, based on the number
of women in need, is a significant under-estimate of the true need, as
the program now serves more than 100,000 men and nonbinary individuals
each year.
---------------------------------------------------------------------------
\3\ 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.
---------------------------------------------------------------------------
An influx of funds is particularly important given the continued
impacts that recovery from the Trump administration's 2019 program rule
and the COVID-19 pandemic are having on the program, the providers
funded by it, and most importantly the patients for whom Title X sites
serve as critical, and sometimes their only, points of access to care.
On July 15, 2019, the Trump administration's new regulations for Title
X went into effect, and the impact was felt almost immediately: by fall
2019, approximately 1,000 health centers across 33 States had withdrawn
from the program, including all of the health centers in six States.
Then, in March 2020, family planning providers, like all frontline
health care workers, needed to adapt overnight to the realities of
serving under-resourced communities during a global pandemic.
In September 2021, OPA released the first Federal data showing the
impact of the rule and COVID-19, and the results were devastating:
relative to 2018, Title X-funded health centers provided family
planning services to 2.4 million fewer patients in 2020, a staggering
61 percent decrease over just 2 years. This drastic decrease translated
to millions of fewer contraceptive services provided, more than 4.3
million fewer STI and HIV tests administered, and more than 800,000
fewer lifesaving breast and cervical cancer screenings performed with
Title X funds. OPA attributed 63 percent of the decrease in patients
served to the 2019 rule and 37 percent to the pandemic.\4\ Compounding
these challenges in accessing Title X-funded services, a 2020 study
showed the COVID-19 pandemic has led many women to want to delay or
prevent pregnancy while it has simultaneously made it more difficult
for people to access family planning and sexual health care, including
contraception.\5\ Women of color and women with low incomes were more
likely to report both findings.
---------------------------------------------------------------------------
\4\ Christina Fowler, Julia Gable, and Beth Lasater, ``Family
Planning Annual Report: 2020 National Summary,'' RTI International
(September 2021). https://opa.hhs.gov/sites/default/files/2021-09/
title-x-fpar-2020-national-summary-sep-2021.pdf.
\5\ Lindberg LD et al, ``Early Impacts of the COVID-19 Pandemic:
Findings from the 2020 Guttmacher Survey of Reproductive Health
Experiences,'' Guttmacher Institute (June 2020). https://
www.guttmacher.org/report/earlyimpacts-covid-19-pandemic-findings-2020-
guttmacher-survey-reproductive-health.
---------------------------------------------------------------------------
The Biden-Harris administration has made significant progress
toward restoring the Title X program, including finalizing a new rule
in October 2021,\6\ distributing $6.6 million in Title X funds to
communities with a dire need for family planning services in January
2022,\7\ and distributing $256.6 million for Title X projects across
the country just last month.\8\ However, the administration was unable
to fund many qualified applicants, and under-funded dozens more, due to
insufficient funds. While a small number of past grantees received
additional funds in May 2022, it is clear that current funding of
$286.5 million annually is simply insufficient to meet the needs of
providers and patients across the country. Without additional funds,
grantees and subrecipients are at significant risk of reducing service
availability, laying off frontline health care workers, and even
closing health centers.
---------------------------------------------------------------------------
\6\ HHS Press Office, ``HHS Issues Final Regulation Aimed at
Ensuring Access to Equitable, Affordable, Client-Centered, Quality
Family Planning Services,'' US Department of Health and Human Services
(October 4, 2021). https://www.hhs.gov/about/news/2021/10/04/hhs-
issues-final-regulation-aimed-at-ensuring-access-to-equitable-
affordable-client-centered-quality-family-planning-services.html.
\7\ ASH Media, ``HHS Awards $6.6 Million to Address Increased Need
for Title X Family Planning Services,'' US Department of Health and
Human Services (January 21, 2022). https://www.hhs.gov/about/news/2022/
01/21/hhs-awards-6.6-million-address-increased-need-for-title-x-family-
planning-services.html.
\8\ ASH Media, ``HHS Awards $256.6 Million to Expand and Restore
Access to Equitable and Affordable Title X Family Planning Services
Nationwide,'' US Department of Health and Human Services (March 30,
2022). https://www.hhs.gov/about/news/2022/03/30/hhs-awards-256-
million-to-expand-restore-access-to-equitable-affordable-title-x-
family-planning-services-nationwide.html.
---------------------------------------------------------------------------
With a significant increase in funds in FY23, OPA can make real
progress toward rebuilding the Title X program and serving more people
in need of these critical services. We thank you for your consideration
of this request and look forward to working with you throughout the
FY23 appropriations process. If you have questions about this request,
please contact Lauren Weiss, Director, Policy & Communications, at
[email protected].
Sincerely,
Clare Coleman
______
Prepared Statement of the National Institute of Diabetes and Digestive
and Kidney Diseases
On behalf of more than 37 million children, adolescents, and adults
living with chronic kidney diseases (CKD) in the United States, the
American Society of Nephrology, the American Society of Pediatric
Nephrology, and the National Kidney Foundation request $49 billion for
the National Institutes of Health base budget in Fiscal Year (FY) 2023,
an increase of 7.9% that will provide real growth above biomedical
research inflation, and request an increase for the National Institute
of Diabetes and Digestive and Kidney Diseases (NIDDK) that is at least
proportional to the increase for NIH. As Congress considers authorizing
and providing additional appropriations for the Advanced Research
Projects Agency for Health (ARPA-H), our request will ensure that
funding for the new entity will supplement, not supplant, those funds
provided to NIH to support much needed basic research and training
programs in kidney disease.
In addition, our organizations request that the committee include
report language in the Labor, Health and Human Services, and Related
Agencies (LHHS) appropriations bill to support achieving kidney health
equity and a strong kidney health workforce. We request that Congress
address kidney health equity by allocating resources at NIDDK to study
improved methods for diagnosing kidney diseases that do not rely on
race-based variables. Further, we request that Congress ensure there is
a physician-scientist workforce ready to meet the current and future
needs of people with kidney diseases by making certain new training
programs, such as the Division of Kidney, Urologic, and Hematologic
Diseases (KUH) U2C grant mechanism, increase the number of training
slots for adult and pediatric physician-scientists. Greater investment
in kidney research is needed to advance the understanding of the under-
recognized public health epidemic of kidney diseases and address the
disproportionate impact of COVID-19 and racial disparities experienced
by Americans living with these conditions.
For nearly 800,000 Americans, kidney diseases progress to kidney
failure, a life-threatening condition for which there is no cure.
Kidney failure is most commonly managed by in-center hemodialysis, a
therapy that has changed little in the 50 years since its development
and has a survival rate worse than most cancers (and comparable with
brain cancers). While a kidney transplant is the optimal therapy for
most patients, it is often inaccessible due to a shortage of organs and
inequities in our Nation's transplant health system. Both dialysis and
transplant patients are immune compromised, which puts them at
increased risk of communicable diseases--especially COVID-19.
Devastatingly, COVID-19 has caused a 20% increase in mortality among
people receiving dialysis, the first-ever decrease of people enrolled
in the Medicare ESRD program. While the long-term effects of COVID-19
on kidney health and function are under investigation, it is likely
that COVID-19 will lead to an influx of new patients with kidney
diseases, and that some of these patients will require ongoing care.
Almost 50 years ago, Congress made a commitment to treat all
Americans with irreversible kidney failure, regardless of age, through
the Medicare End-Stage Renal Disease (ESRD) Program. Medicare annually
spends approximately $125 billion on the care of people with kidney
diseases, or 24% of all Medicare fee-for-service spending. Of this
amount, $37 billion, or 7% of Medicare fee-for-service spending, is
spent managing kidney failure. These costs do not include expenditures
from Medicare Advantage or non-Medicare plans, which together cover 62%
of people with kidney failure. Despite this enormous societal cost,
kidney disease research supported by NIH is equivalent to one-half of
one percent of Medicare fee for service expenditures for beneficiaries
with kidney diseases and kidney failure.
Even as Congress has provided steady increases for the NIH over the
past decade, NIH funding for kidney disease research has lagged far
behind that of NIH overall; between fiscal years 2015 and 2020, funding
for NIH rose 37%, compared to just 19% for kidney research.
Additionally, no dedicated funding has been provided to NIDDK to study
the impact of COVID-19 on kidney health despite the severe impact of
COVID-19 on people with kidney diseases. As a result, research of this
critical topic has come at the expense of existing, and underfunded,
research opportunities. Increased investment in kidney health research
will improve outcomes for people living with kidney diseases and reduce
costs to the US health care system. As Congress considers establishing
new programs to fund science and innovation such as ARPA-H, our
organizations request that the committee maintain and increase
investment in kidney disease research by providing a $49 billion
increase for NIH in FY 2023 with an at least proportional increase for
NIDDK.
improving equity in the diagnosis of kidney diseases
People with kidney diseases face stark racial and socioeconomic
disparities in disease burden and access to care. For instance, Black
Americans and Hispanic Americans are more than four and two times as
likely than White Americans respectively to have kidney failure.
Disparities in prevalence and outcomes are due to multiple factors
including lack of access to care, social determinates of health, and
systemic racism. Greater investment in research is needed to increase
understanding about the underlying causes of disparities and generate
interventions to address them.
One factor contributing to disparities in access to care--
especially transplantation--is the inclusion of race as a variable in
the diagnosis of kidney diseases. Kidney function is commonly assessed
using an equation to estimate glomerular filtration rate (GFR). In
2021, ASN and NKF finalized a recommendation to remove a patient's race
as a variable in equations to estimate GFR. Our organizations request
the committee consider including report language in the FY 2023 LHHS
appropriations bill directing NIDDK to prioritize research on new
approaches for estimating GFR that do not include race as a modifier,
such as the below:
``Improving the Diagnosis of Kidney Diseases.--The Committee
understands that current equations for assessing glomerular
filtration rate (GFR), a key measure of kidney function,
include the patient's race, and that this practice may lead to
disparities for African Americans in terms of access to care
and kidney transplantation. NIDDK should prioritize research on
new approaches for estimating GFR that do not include race as a
modifier.''
enabling a strong kidney health workforce
Most people with kidney diseases experience comorbidities such as
cardiovascular disease (including heart attack and stroke), anemia,
bone disease, hypertension, and diabetes, and face increased risk from
communicable diseases, including COVID-19 which has increased
hospitalization and mortality among this vulnerable population.
Pediatric kidney disease patients are often more complex than adult
patients, many are living with rare medical conditions with unique
needs which must be better understood. A strong, demographically
representative, and culturally competent workforce of physician-
scientists is needed to meet the needs of adults and children living
with kidney diseases, especially while they face deadly consequences of
the COVID-19 pandemic in their daily lives. Our organizations request
that the committee ensure NIDDK is providing adequate support for
training the next generation of kidney health scientists by requesting
NIDDK to report the number of adult and pediatric training positions
funded by the newly established U2C grant mechanism compared to prior
mechanisms. Draft report language to support this request is provided
below:
Kidney, Urologic, and Hematologic Research Training Awards.--The
Committee understands that NIDDK's Division of Kidney,
Urologic, and Hematologic Diseases replaced its T32 training
grant mechanism, which provided grant support to institutions
whose programs promote diversity and offer doctoral degrees in
the health professions or health-related sciences in these
three disciplines, with a new U2C grant mechanism, which
requires institutions to submit a single application to receive
training slots in all three research areas. The T32 program
maintained a strong record of success in training new members
of the biomedical research workforce in nephrology, urology,
and hematology, including future pediatric researchers. With
this in mind, the Committee is concerned that the new U2C
mechanism may lead to a reduction in training slots for adult
and pediatric researchers in these three disciplines. The
Committee requests the Institute provide a comparison of
training positions, adult and pediatric, funded by discipline
under the T32 mechanism in 2018-19 to the number of slots
currently funded and projected to be funded in the next 3 years
under the U2C mechanism within 120 days of enactment.
Greater investment in kidney research should be an urgent priority
to slow disease progression, improve treatment, reduce morbidities, and
improve patients' quality of life. NIDDK-funded scientists have
produced several major breakthroughs in the past several years that
require further investment to stimulate therapeutic advancements. For
example, NIDDK launched the Kidney Precision Medicine Project that will
pinpoint targets for novel therapies--setting the stage for
personalized medicine in kidney care. However, additional funding is
needed to accelerate these and other novel opportunities to improve the
care of patients with kidney disease. Better understanding of kidney
diseases and its progression in adults and children, combined with
improved methods for detecting kidney diseases and a highly skilled
workforce of physician-scientists, may even prevent irreversible kidney
failure in the future.
Thank you again for your leadership, and for your consideration of
our request. Should you have any questions or wish to discuss kidney
disease research in more detail, please contact Erika Miller with the
American Society of Pediatric Nephrology at [email protected]; Zach
Kribs with the American Society of Nephrology at [email protected];
or Lauren Drew with the National Kidney Foundation (NKF) at
[email protected].
about the american society of nephrology
Since 1966, ASN has been leading the fight to prevent, treat, and
cure kidney diseases throughout the world by educating health
professionals and scientists, advancing research and innovation,
communicating new knowledge, and advocating for the highest quality
care for patients. ASN has more than 20,000 members representing 132
countries. For more information, visit www.asn-online.org and follow us
on Facebook, Twitter, LinkedIn, and Instagram.
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.
about the national kidney foundation
The National Kidney Foundation is the largest, most comprehensive,
and longstanding patient-centric organization dedicated to the
awareness, prevention, and treatment of kidney disease in the U.S. In
addition, NKF has provided evidence-based clinical practice guidelines
for all stages of chronic kidney disease (CKD), including
transplantation since 1997 through the National Kidney Foundation
Kidney Disease Outcomes Quality Initiative (KDOQI). For more
information about NKF, visit www.kidney.org.
[This statement was submitted by Zach Kribs, Senior Government
Affairs
Specialist, American Society of Nephrology.]
______
Prepared Statement of the National Institute of Environmental Health
Sciences
The Friends of the NIEHS are pleased to submit the following
testimony regarding Fiscal Year (FY) 2023 Federal appropriations for
the Labor, Health and Human Services, Education, and Related Agencies
in support of the vital work being carried out by the NIH/NIEHS as a
result of the annual appropriation provided for this work in the
subcommittee's bill. We ask you to provide at least $909 million for
NIEHS in FY 2023 as part of an overall appropriation for NIH of $49.048
billion not inclusive of other funds for the Advanced Research Projects
Agency for Health (ARPA-H) or pandemic preparedness. We further request
additional funding of at least $100 million for NIEHS to lead research
efforts on climate change and health, in partnership with other
Institutes and Centers at NIH, to a total funding level of at least
$1.01 billion.
Our coalition of organizations represents a variety of interests,
including medical and scientific professional societies, environment
and public health focused organizations, children's health advocates,
women's health advocates, and many others. Collectively, our community
supports and calls attention to the vital work being done by the
National Institute of Environmental Health Sciences. NIEHS, one of the
component institutes and centers of the National Institutes of Health
(NIH), focuses on the prevention of health problems and diseases with
special emphasis on the intimate interactions between our bodies and
the environments where we live, work, and play over our lifetimes.
niehs plays a unique role in advancing public health priorities
The NIEHS plays a unique role within the NIH; it is the leading
institute conducting research to prevent human illness and disability
by understanding how the environment influences the development and
progression of human diseases and illnesses such as cancer, autism,
asthma, Parkinson's disease, autoimmune diseases, chemical intolerance
or toxicant-induced loss of tolerance, and chemical sensitivities.
Expert research funded by NIEHS addresses diseases across all the NIH
Institutes and Centers and identifies environmental contributors to
health disparities. Specific research areas with projects that address
national priorities include:
Climate Change and Health: NIEHS-funded scientists are poised to
make major discoveries that will help us appreciate and address the
ongoing impacts of climate change on public health. However, additional
funds are needed for NIEHS to maximize the potential for biomedical
research to meet the public health needs driven by climate change.
Additional research is necessary to design and tailor interventions
that will reduce the impact of climate change on the incidence and
severity of disease, in particular for disadvantaged communities that
may not have resources to mitigate the effects of climate change. We
strongly support additional appropriated funds for NIEHS so that NIEHS
can work with all the Institutes and Centers at NIH to develop
solutions that build on existing knowledge and promote
transdisciplinary collaborations to meet the needs of communities
affected by climate change.
Breast Cancer and Health Disparities: NIEHS-funded studies have
been instrumental in advancing our new knowledge about the causes of
cancer, including the discovery of the first breast cancer
susceptibility gene. In 2019, the NIEHS Sister Study, a national cohort
of over 50,000 women, found that women who use chemical hair dye and
chemical hair straighteners have an increased risk of breast cancer,
particularly black women. The study results suggest that chemicals in
hair products may play a role in breast carcinogensis.
Maternal and Children's Health and Environmental Exposures: NIEHS-
funded research also helps us understand how and why pregnant women and
children are uniquely vulnerable to harmful substances in their
environment. Today's pediatric health challenges include chronic
conditions such as obesity, asthma and neurodevelopmental disorders
including learning disabilities and the impacts of COVID-19.
Increasingly, in utero and early childhood exposures are correlated
with life-long consequences including whether such exposures increase
child and adolescent susceptibility to future illness and learning
challenges. NIEHS research is critical, since children have unique
susceptibility to toxicants due to their ongoing development and face
higher rates of exposure to contaminants than adults by virtue of their
size and developmentally-appropriate behaviors. Importantly, NIEHS
helps us identify and act on risks to children's health. A recent
NIEHS-funded study found fewer new asthma cases and an up to 20 percent
lower rate of asthma after air quality improvements, including
reductions in nitrogen dioxide and PM2.5, were made.
Pandemic and Disaster Preparedness: Researchers funded by NIEHS
have highly relevant expertise that has enhanced our response to COVID-
19 and prepared us for future pandemics, for example by identifying
interventions to protect health care workers facing occupational
exposure to SARS-CoV-2 and how environmental exposures such as air
pollution impact individual susceptibility to infection and severity of
disease. NIEHS can also positively impact our response to and recovery
from natural disasters and climate change. For example, the Disaster
Research Response Resources Portal (DR2) and Climate Change and Human
Health Literature Portal provide researchers and the public with
resources and tools to design studies in partnership with communities
and rapidly translate research results into actionable interventions.
Endocrine Disrupting Chemicals: NIEHS-funded research teams have
led the way in advancing our understanding of how chemicals that
interfere with the normal function of hormones and endocrine systems,
also known as endocrine-disrupting chemicals (EDCs) can cause adverse
health effects. New scientific knowledge on EDCs has established that
these chemicals may have nontraditional dose response curves,
developmental effects with long-term consequences, and unique effects
at low doses due to the sensitive nature of the endocrine system. The
decades of scientific contributions of NIEHS to this field resulted in
a 2019 paper identifying key characteristics of EDCs.
increased funding for nih and niehs is necessary in fy 2023
In conclusion, to ensure that NIEHS-funded researchers are able to
continue to advance research in support of the Nation's public health
priorities, the Friends of NIEHS recommend that the subcommittee
provide at least $909 million for NIEHS in FY 2023 as part of an
overall appropriation for NIH of $49.048 billion in the FY 2023 Labor,
Health and Human Services, Education, and Related Agencies
appropriations bill. Further, the subcommittee should provide an
additional $100 million for NIEHS to support necessary research on
climate change and public health to a total level of $1.01 billion.
Finally, we request that any funding for the new Advanced Research
Projects Agency for Health (ARPA-H) agency complement this funding
recommendation for NIH's base budget, rather than supplant the
essential investment in the NIH, to ensure that NIH can continue to
support and grow the investigator-initiated research programs that have
provided the foundation for our collective successes in biomedical
research.
[This statement was submitted by Joseph Laakso, Director of Science
Policy,
Endocrine Society.]
______
Prepared Statement 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 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 related to substance
use disorders (SUDs). CPDD serves as an interface among government,
industry, and academic communities maintaining liaisons with regulatory
and research agencies as well as education, treatment, and prevention
facilities in the SUD field.
In the Fiscal Year 2023 Labor, Health and Human Services
Appropriations bill, CPDD joins with the Ad Hoc Group for Medical
Research in recommending a program level of at least $49.048 billion
for the base budget of the National Institutes of Health (NIH), which
would represent an increase of $4.1 billion over the comparable Fiscal
2022 funding level. For the National Institute on Drug Abuse (NIDA),
CPDD encourages the Committee to provide at least the President's
recommended funding level of $1.843 billion for NIDA, which would
represent an increase of $248 million over the comparable Fiscal 2022
funding level for the Institute.
CPDD also supports the proposal included in the President's Fiscal
Year 2023 budget to change the name of the National Institute on Drug
Abuse to the National Institute on Drugs and Addiction.
We also respectfully request the inclusion of the following NIDA
specific report language.
Opioid Initiative. The Committee continues to be concerned about
the high mortality rate due to the opioid epidemic and
appreciates the important role that research plays in the
various Federal initiatives aimed at this crisis. The Committee
is also aware of the most recent provisional data from the
Centers for Disease Control and Prevention that shows opioid
overdose fatalities were predicted to exceed 100,000 in the 12-
month period ending in June 2021, with the primary driver being
the increased overdose deaths involving synthetic opioids,
primarily illicitly manufactured fentanyls. More research is
needed to find new and better agents to prevent or reverse the
effects caused by this class of chemicals and to provide
improved access to treatments for those addicted to these
drugs. To combat this crisis the Committee has provided within
NIDA's budget no less than $405,400,000 for the Institute's
share of the HEAL Initiative and in response to rising rates of
stimulant use and overdose, the Committee has included language
expanding the allowable use of these funds to include research
related to stimulant use and addiction.
Methamphetamine and Other Stimulants. The Committee is concerned
that, according to provisional data released by the Centers for
Disease Control and Prevention, over 45,000 overdose deaths
involved drugs in the categories that include methamphetamine
and cocaine in the 12-month period ending in June 2021, an
increase of 25 percent in a single year. The sharp increase has
led 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. No FDA-approved
medications are available for treating methamphetamine and
other stimulant use disorders. 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 limits 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 and antidotes for their harmful
effects, we should be lowering regulatory and other barriers to
conducting this research. The Committee appreciates NIDA's
completion of a 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 to sources of marijuana including
dispensary products.
COVID Pandemic and Impact on Substance Use Disorders. The Committee
is acutely aware of the risks that the ongoing COVID-19
pandemic poses to individuals with substance use disorders.
According to the Centers for Disease Control and Prevention,
drug overdose deaths accelerated during the pandemic, and were
predicted to exceed 100,000 in the 12-month period ending in
June 2021, the highest number of overdose deaths ever recorded
in a 12-month period. Moreover, research supported by the
National Institute on Drug Abuse found that individuals with
substance use disorders are at increased risk for COVID-19 and
its more adverse outcomes. The Committee commends NIDA for
conducting research on the adverse impact of the pandemic on
SUDs and encourages the Institute to continue to support
research on these issues.
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 area, 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. The Committee recommends that
NIDA increase its support for the education of scientists and
practitioners to find improved prevention and treatments for
substance use disorders.
Electronic Cigarettes. The Committee understands that electronic
cigarettes (e-cigarettes) and other vaporizing equipment are
increasingly popular among adolescents, and requests that NIDA
continue to fund research on the use and consequences of these
devices.
In addition, we request the following report language within the
Office of the Director account:
The HEALthy Brain and Child Development (HBCD) Study. The Committee
recognizes and supports the NIH HEALthy Brain and Child
Development Study, which will establish a large cohort of
pregnant women and follow them and their children up to age 10
to characterize the influence of a variety of factors on
neurodevelopment and long-term outcomes. The study aims to
enroll approximately 7,500 women from 25 sites across the US,
including regions of the country significantly affected by the
opioid crisis. Participants will include women from the general
population of pregnant women to assess normative development;
those who have or are using opioids and/or other substances
during their pregnancy; and women from comparable environments
to the latter, but who have not used substances during their
pregnancy. 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 illicit substance use, mental disorders, and other
behavioral and developmental problems. The Committee recognizes
that the HBCD Study is supported in part by the NIH HEAL
Initiative, and NIH Institutes, Centers, and Offices (ICOs),
including OBSSR, ORWH, NIMHD, NIBIB, NIMHD, NIEHS, NICHD,
NINDS, NIAAA, NIMH, and NIDA, and encourages additional NIH
support for this important study.
Marijuana Research. The Committee is concerned that marijuana
policies on the Federal level and in the States (medical
marijuana, recreational use, etc.) are being changed without
the benefit of scientific research to help guide those
decisions. NIH 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.
Substance use disorders are 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 SUD as a chronic, often-
relapsing disorder -this new knowledge has helped to correctly
emphasize the fact that SUD 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
fatalities due to synthetic fentanyl, as well as continued illicit use
of prescription opioids. Our knowledge of how drugs work in the brain,
their health consequences, how to treat people with SUDs, and what
constitutes effective prevention strategies has increased dramatically
due to research. However, because the number of individuals who are
affected is still rising, we need to continue the work until this
disease is both prevented and treated effectively and compassionately.
We understand that the FY 2023 budget cycle will involve setting
priorities and accepting compromise, however, in the current climate we
believe a focus on SUDs deserves to be prioritized accordingly. Thank
you for your support for the National Institute on Drug Abuse.
______
Prepared Statement of the National Kidney Foundation
The National Kidney Foundation (NKF) is pleased to submit testimony
to highlight the significant burden that chronic kidney disease (CKD),
including irreversible kidney failure, places on patients, families,
society, and our Nation's health care system. We urge the subcommittee
to increase funding for programs and activities as a bold step to help
transform CKD awareness, prevention, detection, and management.
Specifically, NKF requests $15 million for CKD activities at the
Centers for Disease Control and Prevention and an increase for kidney
research activities under the National Institute of Diabetes and
Digestive and Kidney Diseases (NIDDK) that is at least proportional to
the funding increase for NIH overall. We also request that
appropriations for the Advanced Research Projects Agency for Health
(ARPA-H) be in addition to a robust increase for NIH. Lastly, we urge
greater collaboration between NIDDK and other Institutes studying
related comorbidities and conditions that occur in kidney patients,
such as hypertension, cardiovascular disease, immunology, disparities,
and genomics.
about ckd
Chronic kidney disease impacts an estimated 37 million American
adults and is the Nation's 10th leading cause of death, and 1 in 3
Americans are at risk of developing it. Although it is detectable
through simple blood and urine tests, an estimated 90 percent of
patients are undiagnosed, often until advanced stages when it is too
late for interventions to slow disease progression (up to 40 percent of
people with advanced kidney disease have not seen a nephrologist prior
to progressing to kidney failure). Alarmingly, some patients are not
diagnosed until they have progressed to irreversible kidney failure
(end stage kidney failure, or ESKD) and must undergo urgent start
dialysis. Nearly 800,000 Americans have ESKD, requiring kidney dialysis
at least 3 times per week at a dialysis center, daily home dialysis, or
a kidney transplant to survive. The 5-year survival rate for a dialysis
patient is only 35 percent. The mortality rate for dialysis patients
aged 66-74 is twice that of heart failure and 2.5 times that of cancer.
Medicare spends an estimated $153 billion annually (fee-for-service
and Medicare Advantage combined), nearly 25 percent of Medicare
expenditures, on the care of people with a kidney disease diagnosis.
Individuals with ESKD represent 1 percent of Medicare beneficiaries but
comprise 7 percent of Medicare fee-for-service expenditures. The need
for an increased Federal commitment to address the societal and
economic burdens of CKD is undeniable.
CKD is a disease multiplier, with patients often experiencing
cardiovascular disease, bone disease, anemia and fatigue, and increased
hospitalization. Quality of life is impacted by cognitive challenges,
depression, infection, dietary restrictions, and other factors. CKD
also is an independent risk predictor for heart attack and stroke.
Early-stage intervention can improve outcomes and lower costs, yet
fewer than half of patients with high blood pressure or diabetes (which
together are responsible for three-fourths of all cases of ESKD)
receive CKD testing. To improve awareness, early identification, and
early-stage intervention, NKF calls on Congress to invest in kidney
health programs throughout HHS.
disparities
CKD is characterized by stark racial, ethnic, and socioeconomic
disparities. Blacks/African Americans, Hispanics/Latinos, Asian
Americans and Pacific Islanders, and Native Americans and Alaska
Natives are at higher risk for CKD and ESKD. Blacks/African Americans
make up 13 percent of the U.S. population, but account for 35 percent
of Americans with kidney failure. Kidney failure among Blacks/African
Americans and Hispanics/Latinos are 4 times and 1.3 times more likely
compared to Whites, respectively. Blacks/African Americans and
Hispanics/Latinos experience more rapid decline of kidney function than
Whites and are less likely to have had a visit with a nephrologist
prior to starting dialysis. Blacks/African Americans and Hispanic/
Latinos have less access to the kidney wait list, experience a longer
wait once listed, and are less likely to receive a transplant from a
living donor compared to Whites. The prevalent kidney transplant
population with a functioning graft is 52 percent White, 20 percent
Blacks/African Americans, and 16 percent Hispanics/Latinos. Among
patients waitlisted in 2014, the median wait time for a transplant was
37 months for Whites, 64 months for Blacks/African Americans, and 57
months for Hispanics/Latinos.
covid-19
COVID-19 has amplified the CKD and ESKD disparities discussed
above, as kidney patients (including transplant recipients) are at risk
for severe COVID-19 infection. This increased vulnerability is due to a
series of factors, including compromised immune systems, multiple
comorbidities, and exposure through the in-center dialysis care
environment that necessitates close contact with others. COVID-19
hospitalizations in April 2021 were 8,617 per 100,000 Medicare ESKD
beneficiaries, compared to 1,932 per 100,000 Medicare beneficiaries
overall. Transplant recipients in particular face higher COVID-19
mortality risk. In addition, patients with severe COVID-19 are at an
increased risk of developing acute kidney injury (AKI), often requiring
the need for acute dialysis and sometimes resulting in CKD or
irreversible kidney failure.
cdc chronic kidney disease initiative
The CDC Chronic Kidney Disease Initiative comprehensive public
health strategy was created at the urging of Congress and NKF more than
15 years ago. Annual funding fluctuated between $1.6 million and $2.6
million until Congress provided $3.5 million for FY 2022, for which we
are most appreciative. The CKD Initiative supports a web site,
surveillance and epidemiology activities, and assistance to the
National Center for Health Statistics for CKD data collection. However,
in order to address the roughly 90 percent of patients who are unaware
they have CKD, and the 40 percent who receive no kidney-specific care
before crashing into dialysis in full kidney failure, we must improve
awareness of CKD among the public and health care practitioners to
improve early detection, provide early intervention and improve
outcomes. Early intervention can slow CKD progression and, in some
instances, prevent kidney failure, reduce the impact of comorbidities,
and reduce hospitalizations and readmissions. A sustained public
awareness initiative under the guidance of CDC will educate at-risk
individuals to enhance awareness of the causes, consequences, and
comorbidities of kidney disease, and educate clinical professionals on
early detection and opportunities for intervention. Especially in light
of the connection between surviving COVID-19 and increased risk of
developing kidney disease, the time is right for a major nationwide
program to improve awareness and early detection of kidney disease.
To expedite activities to improve early detection and intervention
measures, NKF requests $15 million for the CKD Initiative to increase
public awareness, educate clinical professionals and expand health
system capacity to diagnose and manage CKD, implement systemic changes
to reduce disparities, and spur innovation by entities that serve the
kidney disease community. Additional funding also would expand capacity
for national CKD prevalence surveillance to allow for repeated
laboratory measures in the National Health and Nutrition Examination
Survey (NHANES). Current national estimates of CKD prevalence using
NHANES rely on single measurements of both serum creatinine and urinary
albumin, preventing researchers from estimating CKD persistence.
niddk
Despite CKD's impact on patients and Medicare, NIH funding for
kidney disease research is only about $700 million annually, or about
$19 per CKD patient, a fraction of what is provided on other major
diseases. Fiscal Year 2021 funding for NIDDK increased by less than 1
percent, the smallest percentage increase of any disease Institute, and
the FY 2022 increase was 3.4 percent. From FY 2015-2020, NIH monetary
support for kidney research increased at half the rate of NIH funding
increases overall. As a result, innovation in kidney research and
treatment has lagged that of other diseases. Scientists however are at
the cusp of potential breakthroughs in improving our understanding of
CKD. 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 given its unique
Medicare coverage.
In October 2021, NKF released a Research Roadmap containing
recommendations for opportunities in pre-clinical and clinical research
in which additional funding could help bridge existing deficits in
kidney disease detection and management, reduce incidence and
disparities, improve outcomes, and lower healthcare costs. Key
recommendations include increasing the number of and access to clinical
trials related to kidney disease (including increased participation by
under-represented populations) and identifying and implementing
strategies to improve the delivery of evidenced-base care in under-
represented populations. Our roadmap was the culmination of input from
nephrology leaders and from kidney patients, family members and care
givers, and living kidney donors. NKF leadership and staff presented
the final recommendations to NIDDK staff and to representatives from
other Institutes and participated in a briefing that was available to
congressional staff and the public.
As the first step towards expanding kidney research opportunities,
NKF requests a substantial funding increase for NIDDK that is
commensurate with the percentage increase to NIH as a whole. Within
that increase, we respectfully request a percentage increase for kidney
research proportional to if not greater than that of NIH overall. NKF
applauds recent clinical practice changes in the diagnosis of kidney
disease and requests priority consideration of new markers to estimate
kidney function. NIDDK should prioritize research into the adoption of
new equations for estimating the Glomerular Filtration Rate (eGFR) that
do not include race as a modifier. We also request NIDDK give priority
consideration to additional investments in CKD clinical trials,
including diversity of participants, and initiatives to improve
evidence-based care in under-represented populations.
Lastly, we request Congress encourage related Institutes to
consider additional funding of kidney activities. Opportunities include
NHLBI support for cardiorenal syndromes in CKD patients; NIAID
initiatives to study CKD effects on the immune system; and NCI
activities to study decreased kidney function in cancer patients.
Thank you for your consideration of the National Kidney
Foundation's requests for Fiscal Year 2023.
[This statement was submitted by Sharon Pearce, Senior Vice
President, Government Relations.]
______
Prepared Statement of the National Marrow Donor Program/Be The Match
Chairwoman Murray, Ranking Member Blunt, 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, continuing the full funding of the
C.W. Bill Young Cell Transplantation Program (Program) within the
Health Resources and Services Administration (HRSA), Health Care
Systems account. In Fiscal Year 2023, we respectfully request that the
subcommittee increase funding for the Program to the amount of
$38,000,000 to eliminate financial and socioeconomic barriers that
reduce access to cellular therapies for thousands of primarily
traditionally underserved patients.
With our Program being founded under the direction and guidance of
our initial Congressional champion, the late Congressman C.W. Bill
Young, NMDP/Be The Match has facilitated over 111,000 bone marrow,
blood stem cell, and cord blood transplants. Each of these transplants
represents a person and a family hoping above all else that cellular
therapy would be the cure to save themselves or a loved one. As the
home of the Nation's Registry, we are forever grateful to Mr. Young for
his legacy of caring for blood cancer and blood disease patients. And,
we are equally honored that Senator Roy Blunt has taken up the charge
with his steadfast determination to ensure that NMDP/Be The Match has
the support of Congress to continue and expand upon how we deliver
cures to patients every single day. Through his commitment to seeing
our patients as people he can help, Senator Blunt's longstanding
promise of expanding the reach and resources of the Nation's Registry
has saved thousands of lives. We know our patients are thankful beyond
measure for his support and we feel that Congressman Young would be
quite proud of Senator Blunt's wholehearted dedication to furthering
the mission of saving lives through cellular therapy.
By establishing a national bone marrow donor registry in the mid-
1980s, Congress promised patients with blood cancers, like leukemia and
lymphoma and other life-threatening diseases, 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
75 diseases, everything from cancers, blood disorders, immune
deficiencies and Sickle Cell. In 2019, 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 10 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 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 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 prayer, 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. It's 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 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
39 million selfless volunteers worldwide, like my sons' donors, who
stand ready to be a life-saving bone marrow donor. It also includes
more than 806,000 cord blood units through Be The Match and
international partnerships, 115,000 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.
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 funding we are
seeking in Fiscal Year 2023, 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 adjust 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 potentially life-
saving donor, and for those who will need to look to the Program for
help in the future, I urge you to fund the C.W. Bill Young Cell
Transplantation Program at $38,000,000 to immediately provide access to
therapy at the point of diagnosis for all patients.
Our request this year builds upon past funding to clear a pathway
for more patients, especially those from minority and rural
communities, to be able to access transplant services. It would enable
targeted donor recruitment efforts, expand early intervention with
community referring physicians upon patient diagnosis to accelerate the
path to transplant, and propel innovation to improve outcomes and
establish new treatment options to ensure a matched donor for all
searching patients, regardless of their racial/ethnic background or the
complexity of their DNA, ensuring access to transplant and equal and
successful outcomes for all.
More than any other Committee in Congress, the programs you support
save lives every day. The increase we are asking for this year will
immediately increase the number of patients who enter the pipeline to
receive a bone marrow transplant for a lifesaving cure.
[This statement was submitted by Kristin Akin on behalf of National
Marrow Donor Program/Be The Match.]
______
Prepared Statement of the National Pancreas Foundation
summary of fiscal year 2023 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 $3.5 billion for FY 2023 to bring total
agency funding up to a minimum of $49 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).
--Please provide separate and distinct funding to further support
the emerging Advanced Research Projects Agency for Health
(ARPA-H) initiatives, which would ensure this important new
effort does not supplant any ongoing NIH activities.
--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 $2.55 billion in
discretionary resources to bring total agency funding up to a
minimum of $11 billion annually.
--Please provide $6 million in dedicated, line-item funding for the
Chronic Disease Education and Awareness (CDEA) Program
within the National Center for Chronic Disease Prevention
and Health Promotion to facilitate support for meritorious
and timely public health campaigns.
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, 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. We also thank you for the ongoing support for the CDEA
program at CDC. The Foundation has developed a strong proposal and
additional resources will allow us (along with many other patient
groups) to apply and compete for a CDC cooperative agreement. For FY
2023, we urge you to maintain this commitment to medical research and
to similarly increase support public health programs. 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 health care professionals.
conditions of the pancreas
Pancreatitis can be acute or 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 like insulin. 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 FY 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 gaps 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.
Increasing funding for the CDEA program to $6 million will provide
CDC with the resources and flexibility it needs to hold another
competition and award a third cohort of 3-year cooperative agreements
through this mechanism. The collaborative public health efforts already
underway with CDC have been meaningful for their communities and we
look forward to pursuing a similar program and impact for pancreatitis.
african american initiative
The incidence of pancreatitis is higher in African Americans than
any other racial group in the U.S. Many studies suggest that
environmental and socioeconomic factors have contributed to the
increased risk of pancreatitis among African Americans. Other
preventable risk factors that are more common among African Americans
that increase the risk of pancreatitis include type 2 diabetes, and
obesity. Although smoking is not a cause of pancreatitis, it can
accelerate the progression of the disease.
To promote health equity and address health disparities within the
community, the Foundation worked with a diverse team of leading medical
experts to develop and advance a pancreatitis and pancreatic cancer
awareness campaign with the African American community. We welcome
Federal collaborations to support further awareness and bolster
critical public health activities.
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 decreased 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.
Lee Zeidman's Story
My name is Lee Zeidman. I am a Strategic Communications Consultant
and pancreatic cancer survivor. I'm a native Washingtonian. I was part
of the team that launched CNN in 1980. I also was a local sportscaster
early in my career in Washington, D.C. and New York City.
I came down with an acute case of pancreatitis while on a business
trip on the west coast. It was the worst pain I've ever felt--and I've
broken bones playing sports. I went to the emergency room. I flew home
to New York City the next day and was admitted into Weill-Cornell
Medical Center where I spent 10 days in the hospital.
The doctors at Weill-Cornell diagnosed acute pancreatitis and told
me it was manageable. My wife was concerned that it was cancer. She
insisted they do a biopsy to rule out cancer. The doctor insisted there
was no relationship between pancreatitis and pancreatic cancer (this
was back in 2013, now doctors routinely look for cancer when treating
pancreatitis). Grudgingly, the doctor agreed to do a biopsy after my
wife repeatedly insisted. I was put on a liquid diet and sent home. Two
days later the doctor called and told us to come back to the hospital,
they needed to have an urgent conversation about my health. At that
moment I knew the doctors had been wrong--I knew it was pancreatic
cancer. The doctor refused to acknowledge the diagnosis and the news
had to be delivered face-to-face. I quickly realized that had my wife
not insisted on the biopsy, I might have died from pancreatic cancer
within months.
My surgery was 9 years ago. It gave me a new lease on life. I still
go to Sloan Kettering for annual check-ups, but I remain cancer-free. I
am diabetic and wear an insulin pump, but that's a small price to pay
for surviving pancreatic cancer.
[This statement was submitted by David Bakelman, Chief Executive
Officer,
National Pancreas Foundation.]
______
Prepared Statement of the National Scleroderma Foundation
the foundation's fiscal year 2023 l-hhs appropriations recommendations
_______________________________________________________________________
--$11 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 funding increase for CDC's National Center for
Chronic Disease Prevention and Health Promotion (NCCDPHP).
--$6 million for the Chronic Disease Education and Awareness
Program which seeks to improve public health and lower
healthcare costs through targeted awareness, physician
education, and public health campaigns conducted in
collaboration with stakeholder organizations and
communities.
--At least $49 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).
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, and distinguished members
of the subcommittee, thank you for your time and your consideration of
the scleroderma community's priorities while working to craft the FY
2023 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 National Scleroderma Foundation is a 501(c)(3) charitable
organization founded in 1998 to advance medical research, promote
disease awareness, and provide support and education to people with
scleroderma. Supported by a network of thousands of individuals across
the United States, the Foundation is a leader in funding peer-reviewed,
innovative research to discover the cause, understand the mechanism,
and overcome scleroderma forever.
One of the most challenging things about scleroderma is that it
shows up differently in each person. Scleroderma is complicated to
manage, since it does not follow one clear path. At the National
Scleroderma Foundation, we know that no two scleroderma journeys are
the same. We help people find the resources that are right for them so
they can live better with scleroderma.
centers for disease control and prevention
Early recognition and 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 continued
support of the 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 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. Because of this, it is important
to promote cross-cutting research across such Institutes as NIAMS and
NHLBI.
Please provide NIH with a significant funding increase so the
scleroderma research portfolio can continue to expand and facilitate
key breakthroughs. Continued support in the following areas is critical
to improving the health of people with scleroderma:
--The Trans-NIH Working Group on Fibrosis, which is working to
promote cross-cutting research across Institutes.
--The Scleroderma Lung Study II, being led by NNHLBI, which is
comparing the effectiveness of two drugs in treating pulmonary
fibrosis in scleroderma.
--Leading efforts to discover whether three gene expression
signatures in skin can serve as accurate biomarkers predicting
scleroderma as well as 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 being led by NIAMS.
Every story we hear from someone living with scleroderma reminds us
how disruptive and life-altering this disease is. Now more than ever,
it is important it is for us to understand scleroderma and find a cure.
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 must 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.''
[This statement was submitted by Mary J. Wheatley, IOM, CAE, Chief
Executive Officer, National Scleroderma Foundation.]
______
Prepared Statement of the National Technical Institute for the Deaf
Chairwoman Murray, Ranking Member Blunt and Members of the
Committee:
I respectfully submit the FY 2023 budget request for NTID, one of
nine colleges of RIT, 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 also prepares professionals to
work in fields related to deafness. 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.
budget request
On behalf of NTID, for FY 2023 I would like to request $95,200,000
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 25 percent of NTID's Operations
budget coming from non-federal funds, up from 9 percent in 1970. Since
FY 2013, NTID raised more than $11 million in support from individuals
and organizations.
Like all college campuses, NTID is seeing a greater demand for
mental health and counseling services, a phenomenon that has been
exacerbated by the COVID-19 pandemic. With 45 percent of NTID students
being eligible for Pell Grants, many of these students do not have
access to external resources and rely on what they receive at RIT/NTID.
This FY 23 request includes funding to hire three additional counselors
to provide students with and connect students to the mental health and
case management services they need. It also includes funding to hire 13
additional captionists, a crucial service for deaf and hard-of-hearing
students to access content inside and outside of class and another area
where NTID has seen a dramatic increase in student requests.
NTID's FY 23 request also includes funding to establish a new
Bachelor's of Science in Applied Internet of Things (IoT). This
interdisciplinary field involves the application of interconnected
devices embedded with electronics that communicate and share
information across the Internet. The new degree will address the four
major areas of IoT--hardware, software, communication and
cybersecurity--and will be applied across the many employment sectors
of IoT, including agriculture, manufacturing, healthcare, and
government.
NTID's secondary mission includes preparing professionals to work
in fields related to deafness, such as sign language interpreting,
teaching deaf students, and audiology. NTID's FY 23 request would
provide significant scholarships to support students in NTID's American
Sign Language and Interpreting Education program and Master of Science
in Secondary Education of Students who are Deaf or Hard of Hearing
program, as well as provide externships to audiologists. The
scholarships would aim to address the shortage of students going into
these fields, as well as increase underrepresented students in these
occupations.
For FY 23, NTID hopes to increase outreach funding for the NTID
Regional STEM Center (NRSC) partnership by $1,000,000 to expand NRSC
programs. The NRSC partnership serves deaf and hard-of-hearing students
primarily 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.
enrollment
Truly a national program, NTID has enrolled students from all 50
States. In Fall 2021 (FY 2022), NTID's enrollment was 1,166 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 FY 2022, 245 deaf and hard-of-hearing high school
students enrolled in dual-credit courses at partner high schools.
ntid academic programs
NTID offers 21 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. NTID
also offers two bachelor's degree programs (ASL-English Interpretation
and Community Development & Inclusive Leadership) as well as an MS in
Secondary Education of Students who are Deaf and Hard of Hearing.
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, 219
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 2-year and 4-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
FY 2020 graduates (the most recent class for which numbers are
available), 95 percent were employed 1 year later, with 72 percent
employed in business and industry, 21 percent in education and non-
profits, and 7 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 FY 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 FY 2021, 117,831 hours of interpreting and 27,744 hours of
real-time captioning were provided to students.
summary
NTID's FY 2023 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
FY2023 request of $95,200,000 for Operations.
We are hopeful that the members of the Committee will agree that
NTID, with its long history of successful stewardship of Federal funds
and an outstanding educational record of service to people who are deaf
and hard of hearing, remains deserving of your support and confidence.
Likewise, we will continue to demonstrate to Congress and the American
people that NTID is a proven economic investment in the future of young
deaf and hard-of-hearing citizens. Quite simply, NTID is a Federal
program that works.
[This statement was submitted by Dr. Gerard J. Buckley, President,
National Technical Institute for the Deaf, Vice President and Dean,
Rochester Institute of Technology.]
______
Prepared Statement of The Nature Conservancy
Chair Murray, Ranking Member Blunt and members of the subcommittee,
thank you for the opportunity to submit recommendations for fiscal year
2023 (FY23) appropriations for programs under the Department of Labor
(DOL). The Nature Conservancy (TNC) is a nonprofit conservation
organization working around the world to protect ecologically important
lands and waters for people and nature. Our mission is to conserve the
lands and waters upon which all life depends.
TNC appreciates Congress's work last year to pass the bipartisan
Infrastructure Investment and Jobs Act (IIJA), which included
significant investments in developing employee training and an
equitable workforce. This will help strengthen our communities, create
jobs and build a more prosperous future for all. These investments
complement but do not supplant the need for ongoing program funding
through the appropriations process. We ask the subcommittee to advance
a robust appropriations package that will serve as the foundation for
implementing the IIJA and ensuring long-term success for critical
programs under the panel's jurisdiction.
The pandemic made evident the economic disparities that exist due
to low-wage jobs. We appreciate concerns about the country's current
economic scenario where the Congress must balance job growth while also
addressing inflation. We see investments in employment training and on-
the-job training experiences as a tremendous opportunity to contribute
to the Nation's economy. By supporting workforce development programs
like the Job Corps and AmeriCorps, we can provide career development
opportunities for youth and the unemployed through conservation and
restoration projects on lands across the country.
An example of the significant impacts investments in corps programs
have on communities, their economies, and the environment is the work
being done by the GulfCorps program. Over the last 5 years, TNC has
worked extensively to develop, design and implement a region-wide,
GulfCorps program, a five-state (Alabama, Florida, Mississippi,
Louisiana and Texas) conservation corps program in the Gulf of Mexico
region. This program was carried out under a contract with National
Oceanic and Atmospheric Administration (NOAA) with funding from the
Deepwater Horizon oil spill settlement. TNC has operated GulfCorps in
partnership with NOAA, the RESTORE Council, the Student Conservation
Association, The Corps Network and local conservation corps and
community development organizations.
In 2021, the RESTORE council voted to renew the program for
additional 4 years and awarded $11.9 million to GulfCorps. The program
will use the additional funding to create more than 400 conservation
jobs over 4 years in the Gulf of Mexico. As of July 2021, this program
has restored, conserved, and monitored 10,000 acres of TNC and partner
lands. Additionally, 60 percent of the National AmeriCorps program
alumni have taken their experience and skills and applied them to full-
time positions in the conservation field (both within TNC and with
partners).
The DOL budget levels detailed below represent a significant
investment in our Nation's future. TNC asks your support for the
following requests:
department of labor
AmeriCorps: TNC supports no less than $1,340,000,000, which is
consistent with the president's FY23 budget request. This amount
represents a $140 million increase from FY22 funding. The AmeriCorps
program (officially known as the Corporation for National and Community
Service) supports approximately 77,500 members providing service to
communities across the country through local organizations and
Governors' State Service Commissions. The AmeriCorps' state and
national programs accomplish critical projects like disaster response
and recovery, infrastructure, wildfire remediation, public lands
access, and disconnected youth and veteran engagement. AmeriCorps and
the country's network of conservation corps aim to develop a service
ethic in young people; build and support diverse, inclusive and
equitable American communities; provide education and vocational
training; complete significant amounts of high-quality work in
communities and on our public lands and waters; and prepare
participants to advance to a career in conservation.
Conservation and restoration work that AmeriCorps supports has been
shown to yield a high return on investment. For example, when
performing coastal restoration work, on average 15 jobs are created per
million dollars invested and this increases to up to 30 jobs per
million dollars invested for the more complex, labor-intensive
restoration projects, according to data collected by National Oceanic
and Atmospheric Administration. Similarly, every $1 invested by the
U.S. Forest Service (USFS) in resource management generates $1.43 in
GDP and, on average, 19 jobs are created per million dollars invested.
Additionally, projects completed by AmeriCorps and the network of
conservation corps will help improve and support the local economies of
the communities they are located in. We appreciate the increased
funding provided in FY22 for AmeriCorps and TNC urges the subcommittee
to continue strong funding for this program in FY23.
Job Corps: TNC supports funding no less than $1,778,964,000, which
is consistent with the president's FY23 budget request. This amount
represents a $30 million increase from FY22 funding. DOL co-leads Job
Corps with USFS. For almost 100 years, USFS has combined land
stewardship with education and training, beginning with the development
of the Civilian Conservation Corps in the 1930s. The agency manages 20
percent of the DOL Job Corps through their Civilian Conservation
Centers. We would like to see USFS participation continue to be
supported by DOL at least at this level. The mission of the Forest
Service Job Corps Civilian Conservation Centers is to train eligible
youth ages 16 to 24 with educational, social and vocational skills,
while offering an integrated approach to address the Nation's
conservation challenges. As first responders during local, State and
national disasters, USFS Job Corps students also are trained by local
agency units to assist during national emergencies, including those
caused by wildfires, floods, hurricanes and tornados. Each year,
Civilian Conservation Centers serve about 3,800 students and about 85
percent of the graduates start new careers, enroll in higher education
programs or join the military, according to USFS. As mentioned in the
previous section, projects supported by corps programs produce a high
return on investment and aid in the economic recovery of local
communities. TNC supports continued robust funding for the Job Corps
program and its Civilian Conservation Centers.
Thank you for the opportunity to submit TNC's recommendations for
the FY23 subcommittee on Labor, Health and Human Services, Education
and Related Agencies Appropriations Bill. Please contact me if you have
any additional questions or would like additional information.
[This statement was submitted by Sarah Murdock, Director, U.S.
Climate
Resilience and Water Policy, The Nature Conservancy.]
______
Prepared Statement of NephCure Kidney International
summary of recommendations for fiscal year 2023
_______________________________________________________________________
--Provide $49 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.
--Provide $11 billion for the Centers for Disease Control and
Prevention (CDC) and $6 million for the Chronic Disease
Education and Awareness Program.
_______________________________________________________________________
Chairwoman Murray and Ranking Member Blunt, thank you for the
opportunity to present the views of NephCure Kidney International
regarding research on focal segmental glomerulosclerosis (FSGS) and
nephrotic syndrome (NS). NephCure is the only non-profit organization
exclusively devoted to finding a cure and supporting patients with 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, and others. 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 because of FSGS.
Unfortunately, the causes of FSGS and other 'filter related' 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 that 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 aggressive APOL1 gene variants. 75 percent of Black
Americans with FSGS possess this gene. 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 and other forms of NS could achieve tremendous
savings in Federal health care 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 health care 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
(NEPTUNE) and the Cure Glomerulonephropathy Network (CureGN).
With collaboration from other Institutes and Centers, 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 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 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 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 FY13. 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
trials leading to more trials than ever before. This has led to the
creation of the Kidney Health Gateway Clinical which will connect
patients with breakthrough clinical trials and access to top Nephrotic
Syndrome doctors all in one place. These crucial trials will hopefully
lead to more treatment options for our patients.
chronic disease education and awareness
We thank the subcommittee for the creation of the Chronic Disease
Education and Awareness Program in FY 2022 and encourage continued
support by providing $6 million for this critical program in FY 2023.
Patient Perspective
Meet 16-year-old Macy! She was diagnosed with Nephrotic Syndrome
and later FSGS when she was three. Her 13-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 areis just the beads she earned in 2018!
Those black beads are for pokes (lab draws, IVs, 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!
Thank you for the opportunity to present the views of the FSGS/NS
community.
[This statement was submitted by Josh M. Tarnoff, CEO, 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 2023 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, 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
have a higher chance of developing 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. NF1 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
millions of 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 FY1990 to an estimated $28 million in FY 2022. Given the
potential offered by NF research for progress against a range of
diseases, we are hopeful that the NIH will continue to build on the
successes of this program by funding this promising research and
thereby continuing the enormous return on the taxpayers' investment.
We appreciate the subcommittee's strong support for the National
Institutes of Health and will continue to work with you to ensure that
opportunities for major advances in NF research at the NIH are
aggressively pursued. Thank you.
______
Prepared Statement of New Leaders
Thank you for the opportunity to provide testimony regarding the
fiscal year 2023 Labor, Health and Human Services, Education, and
Related Agencies Appropriations bill.
New Leaders is a national nonprofit organization dedicated to
ensuring high academic achievement for all children, especially
students in poverty and students of color, by developing
transformational school leaders and advancing the policies and
practices that allow great leaders to succeed. Together with our school
system partners, we build the capacity of equity-minded school leaders
who are committed to the success of every child. Our leaders remove
barriers to success for underestimated and underserved students,
supporting students in fully realizing their futures as the next
generation of great thinkers, innovators, and leaders for our society.
Over the past 20 years, we have trained more than 8,000 equity-focused
leaders-sixty percent of whom identify as leaders of color. Our leaders
impact more than 2 million students in our K-12 school system annually
and serve as powerful and positive forces for change in their
communities. In addition, our programs are evidence-based. Multiple
independent studies have found that students who attend New Leader
schools outperform their peers by statistically significant margins
specifically because of the strong leadership of their New Leader
principal.\1\ And a recent review of school leadership interventions
cited New Leaders as the principal preparation program with the
strongest evidence of positive impact on student achievement.\2\
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\1\ Gates, S.M., Baird, M.D., Doss, C.J., Hamilton, L.S., Opper,
I.M., Master, B.K., Tuma, A.P., Vuollo, M., Zaber, M.A., (2019).
Preparing School Leaders for Success Evaluation of New Leaders'
Aspiring Principals Program, 2012-2017. RAND Corporation RR-2812-NL.
Gates, S., Hamilton, L., Martorell, P., et. al. (2014). Preparing
Principals to Raise Student Achievement: Implementation and Effects of
the New Leaders Program in Ten Districts. The RAND Corporation.
Retrieved from http://www.rand.org/pubs/research_reports/RR507.html.
\2\ Herman, R., Gates, S. M., Chavez-Herrerias, E. R., and Harris,
M. (2016). School Leadership Interventions Under the Every Student
Succeeds Act (Volume I). The RAND Corporation. Retrieved from http://
www.rand.org/content/dam/rand/pubs/research_reports/RR1500/RR1550/
RAND_RR1550.pdf.
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New Leaders is committed to getting a well-prepared, well-supported
principal in every school so that our Nation's teachers and students
can thrive. More than a decade of research shows that well-prepared,
well-supported principals have a huge influence on teacher practice and
student success. School leaders account for 25 percent of a school's
impact on student learning,\3\ and an above-average principal can
improve student achievement by 20 percentage points.\4\ And school
leaders transform the lowest-performing schools, where the positive
effects of strong leadership on student achievement are most
pronounced.\5\ In fact, a landmark study found ``virtually no
documented instances of troubled schools being turned around without
intervention by a powerful leader.'' \6\
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\3\ Leithwood, K., Seashore Louis, K., Anderson, S., & Wahlstrom,
K. (2004). How leadership influences student learning: A review of
research for the Learning from Leadership Project. New York, NY: The
Wallace Foundation. Retrieved from http://www.wallacefoundation.org/
knowledge-center/Pages/How-Leadership-Influences-Student-Learning.aspx.
\4\ Marzano, R. J., Waters, T., & McNulty, B. A. (2005). School
leadership that works: From research to results. Alexandria, VA:
Association for Supervision and Curriculum Development.
\5\ Seashore Louis, K., Leithwood, K., Wahlstrom, K., & Anderson,
S. (2010). Investigating the links to improved student learning.
Washington, DC: Wallace Foundation. Retrieved from http://
www.wallacefoundation.org/knowledge-center/Pages/Investigating-the-
Links-to-Improved-Student-Learning.aspx.
\6\ Leithwood, K., Seashore Louis, K., Anderson, S., & Wahlstrom,
K. (2004).
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We were pleased that the Biden Administration has proposed funding
the School Leader Recruitment and Support Program (SLRSP) at $40
million in FY23, and we strongly encourage Congress to fund the program
at this level.
The School Leader Recruitment and Support Program (SLRSP) was
authorized under ESSA with bipartisan support and is the only Federal
program with an exclusive focus on evidence-based school leadership
interventions for high-need schools. SLRSP updates the School
Leadership Program (SLP), the program included in the previous version
of the Elementary and Secondary Education Act, and provides districts
with resources to develop and support dynamic leaders who have a
measurable, positive impact on student achievement. The program
empowers eligible entities-including State or local educational
agencies-to pursue a range of activities in support of school
leadership for high-need schools, such as the development and
implementation of leadership training programs, the provision of
ongoing professional development for school leaders, and the
dissemination of best practices regarding the recruitment and retention
of highly effective school leaders. In addition, eligible entities may
carry out projects in partnership with nonprofit organizations and
institutions of higher education. Finally, under priorities set forth
in the reauthorized statute, SLRSP incentivizes eligible entities to
focus on principal preparation and professional development practices
for which there is evidence of effectiveness, as demonstrated through
rigorous research.
Of critical importance right now, SLRSP can help combat the
deleterious effects of the COVID pandemic on our educator workforce.
According to a recent poll conducted by the National Association of
Secondary School Principals (NASSP), 45 percent of principals report
that pandemic working conditions are accelerating their plans to leave
the profession, and nearly four out of 10 principals plan to leave the
profession in the next 3 years.\7\ Leadership transitions are
disruptive and negatively impact students' learning experiences.
Through high-quality professional development and support, we can
support the steady, determined leadership of experienced principals
even as we invest in preparing the next generation of school leaders.
Further, many teachers are burned out and suffering from low morale,
with more than half of teachers reporting they plan to quit due to
COVID-related workplace stressors.\8\ Yet we know that effective school
leaders can make all the difference: 97 percent of teachers list
principal quality as critical to their retention and career decisions-
more than any other factor.\9\ And we know that strategies to address
principal burnout, which disproportionately affects high-need
schools,\10\ can yield huge cost savings for school systems,\11\ which
can be reinvested in pandemic recovery efforts.
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\7\ National Association of Secondary Principals. (2020). NASSP
Survey Signals a Looming Mass Exodus of Principals From Schools.
Retrieved from https://www.nassp.org/news/nassp-survey-signals-a-
looming-mass-exodus-of-principals-from-schools/.
\8\ National Education Association. (2022). Poll Results: Stress
And Burnout Pose Threat Of Educator Shortages. Retrieved from https://
www.nea.org/sites/default/files/2022-02/NEA percent20
Member percent20COVID-19 percent20Survey percent20Summary.pdf.
\9\ Scholastic Inc. (2012). Primary Sources: America's Teachers on
the Teaching Profession. New York, NY: Scholastic and the Bill and
Melinda Gates Foundation. Retrieved from http://www.scholastic.com/
primarysources/pdfs/Gates2012_full.pdf.
\10\ According to 2014 data from the National Center for Education
Statistics, high-need schools must also grapple with an overall
principal turnover rate of 28 percent, significantly higher than
schools in more affluent communities.
\11\ According to School Leaders Network (2014), up to $330K
annually for a typical urban district.
School Leaders Network. (2014). Churn: The High Cost of Principal
Turnover. Retrieved from http://connectleadsucceed.org/sites/default/
files/principal_turnover_cost.pdf#page=1&zoom=
auto,-15,792.
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The Federal Government has a crucial role to play in advancing
innovation and sharing best practices with the field so that State and
local leadership strategies, especially for high-need schools, can be
strengthened, now and in the future, by a strong and growing evidence
base. The SLP helped launch and expand some of the country's most
innovative and effective leadership development programs, including New
Leaders, New Teacher Center, NYC Leadership Academy, and TNTP. Since
receiving SLP grants, these organizations have grown exponentially to
reach many more schools, teachers, and students in high-need
communities--greatly expanding the impact of the Federal Government's
initial investment. Further, SLP grantees, including those affiliated
with the University Council of Educational Administrators (UCEA), have
demonstrated a remarkable commitment to programmatic evaluation,
continuous improvement, and transparency. By proactively sharing their
lessons and resources open-source with the field, these organizations
have helped to galvanize dramatic changes to the principal preparation
sector as a whole \12\--inspiring necessary changes to the way
principals are trained to lead our Nation's schools in States and
districts across the country.
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\12\ University Council for Educational Administration and New
Leaders. (2016). State Evaluation of Principal Preparation Programs
Toolkit. Retrieved from www.sepkit.org.
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We urge Congress to restore funding for SLRSP at $40 million to
support innovative, evidence-based school leadership programs that
promise a return for students and schools that far exceeds this
targeted investment.
Thank you for the opportunity to provide the views of New Leaders
on the FY 2023 appropriations. If you would like to discuss our
recommendations, please do not hesitate to contact
[email protected].
[This statement was submitted by Jean Desravines, CEO, New
Leaders.]
______
Prepared Statement of the Northwest Portland Area Indian Health Board
Greetings Chair Murray, Ranking Member Blunt, and Members of the
subcommittee, for the opportunity to share the Northwest Portland Area
Indian Health Board's funding priorities for the Department of Health
and Human Services (HHS) in FY 2023. My name is Nickolaus Lewis, and I
serve as Council on the Lummi Indian Business Council, and as Chair of
the Northwest Portland Area Indian Health Board (NPAIHB or Board). I
thank the subcommittee for the opportunity to provide testimony on FY
2023 HHS appropriations.
The 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 health care
issues. The Board's mission is to eliminate health disparities and
improve the quality of life of American Indian and Alaska Native (AI/
AN) people by supporting Northwest Tribes in the delivery of culturally
appropriate, high quality health programs and services. ``Wellness for
the seventh generation'' is the Board's vision. In order to achieve
this vision, NPAIHB delegates respectfully ask that this subcommittee
consider Tribal sovereignty, traditional knowledge, and culture in all
policy initiatives and funding opportunities.
These past 2 years, COVID-19 has dramatically impacted Northwest
Tribes and carries long-term effects physically, mentally, emotionally
and physically. We are grateful for the diligent service of our
Congressional representatives in ensuring that Tribal Nations were
provided with resources, including vaccines and medical supplies, to
battle this pandemic. We know that working together improved our
ability to take care of our people despite the long standing systemic
and funding shortfalls to the Indian health care system. As we emerge
from the pandemic, I make recommendations that will help rebuild and
repair the foundational necessities for the Indian health care system.
hhs and its agencies
This subcommittee must honor Tribal sovereignty and trust and
treaty obligations as to HHS funding to Tribal Nations. For FY 2023, we
ask this subcommittee to make the legislative changes needed across all
HHS agencies to move away from grants and allocate funding to Tribes
through Indian Self-Determination and Education Assistance Act (ISDEAA)
compacts and contracts. We also request Tribal set-asides and direct
funding to Tribes--not through State block grants.
We also request that this subcommittee consider the important role
that Tribal Epidemiology Centers (TECs) play in the Indian health
system and support funding to TECs. TECs should be funded across HHS
agencies to provide support to Tribes in their area for any type of
data or evaluation component, surveillance support and/or training and
technical assistance. TECs know the Tribes in their area and should be
given the opportunity to support Tribes in their roles as public health
authorities.
substance abuse and mental health services administration
Tribal Opioid Response. Through Tribal Opioid Response (TOR)
funding, NPAIHB coordinated a TOR consortium of 28 Northwest Tribes.
Our Tribes have developed innovative opioid programs with positive
outcomes reflecting the resilience in our area. For example, the Lummi
Nation brought on success coaches (peers) for those using or in
recovery and 18 of the 28 TOR consortium Tribes have made medication-
assisted treatment (MAT) available. However, a funding increase is
needed for a more robust opioid response in Tribal communities. In FY
2023, we request an increase in TOR funding to $75 million; and an
increase in the Tribal MAT funding to $20 million.
Other Grant Programs. Thank you for the increases to the AI/AN Zero
Suicide Initiative funding, and Tribal Behavioral Health Grants in FY
2022. For FY 2023, we request the following amounts for Tribal Specific
Programs: fund the Tribal Behavioral Health Grant program at least $50
million--$25 million for mental health and $25 million for substance
use disorder; fund the Garrett Lee Smith Suicide Prevention Tribal Set
Aside at $3.5 million; fund Zero Suicide Initiative at $3 million; and
fund the National Child Traumatic Stress Initiative Tribal Set Aside at
$1.5 million.
Designated Resources for Youth Behavioral Health Programs. In order
to comprehensively address the need for whole person mental health and
substance use disorder services for AI/AN youth, there must be
dedicated funding streams for culturally-centered prevention,
intervention, treatment, aftercare and transitional living support.
Funding for Youth Residential Treatment Centers that provide aftercare
and transitional living for both substance use disorder and mental
health are a priority for Portland Area Tribes and current facilities
in the area do not meet demand. For FY 2023, we request $25 million in
funding for youth-specific outpatient and inpatient mental health and
substance use programs.
office of the secretary
Minority HIV/AIDS Fund. The Minority HIV/AIDS Fund is a significant
funding source for communities of color that have not traditionally
been supported by mainstream opportunities, and includes important
funding to IHS for HIV and hecpatitis C (HCV) prevention, treatment,
outreach and education. Tribes in the Portland Area appreciated the
$1.5 million MHAF Tribal set-aside in FY 2022. For FY 2023, we request
that funding for Minority HIV/AIDS Fund be increased to $80 million
with a $15 million Tribal set-aside. This is a step toward addressing
the impact that HIV has in Indian Country and continuing. the important
program work that is already in place. We thank OASH for the
relationship it has created with IHS and Tribes over the past 15 years.
Climate Change. Climate change has been significantly impacting our
Northwest Tribes. Tribal communities are facing increased flooding that
impacts our health care operations and continually threatened by
increased forest fires year after year. We request that this
subcommittee provides additional funding to support Tribal capacity
building and training for Tribal communities. This would allow Tribes
to be in charge of collecting and monitoring their own scientific data.
We also request a 5 percent set aside of all climate change funding for
Tribes.
centers for disease control and prevention
Public Health Infrastructure & Environmental Impacts. COVID-19 has
demonstrated the under-investment made by the Federal Government in
public health and medical care infrastructure in the Indian, Tribal,
and Urban (I/T/U) health system. The I/T/U system is underfunded, and
lacks capacity to respond effectively to public health emergencies like
COVID-19. We can no longer allow population density as the primary
consideration in the allocation of emergency preparedness resources. In
FY 2023, we request at least $1 billion for a Tribal Public Health
Emergency Fund established through the Secretary of HHS that Tribes can
access directly for tribally-declared public health emergencies.
Through the Tribal Public Health Emergency Fund, disease intervention
services--which played such a vital role in COVID-19--could be used to
respond to the syphilis outbreaks across Tribal communities.
Include Tribes in HIV/HCV Funding Opportunities. HIV/HCV prevention
and education generally flows to States via block grants. This leaves
many Tribes with limited or no resources and forces Tribes to compete
with States for funding. For FY 2023, we recommend that the
subcommittee set-aside at least $25 million for HIV and HCV prevention
for Tribal communities.
Fund Good Health and Wellness in Indian Country (GHWIC). The GHWIC
initiative supports AI/AN communities in the implementation of holistic
and culturally adapted approaches to reduce and prevent chronic disease
through policy, system and environment changes. With COVID-19, Tribal
communities are more focused than ever on the importance of healthy,
culturally appropriate and locally-produced foods and the nutritional
and healing qualities of these food in a time of crisis. Likewise, the
importance of protecting and promoting our traditional first food,
human milk for our youngest members. Additional funding is needed to
address food access issues, food insecurity, and support traditional
food and local food system initiatives beyond COVID-19. NPAIHB
recommends that the subcommittee allocate at least $32 million in
fiscal Year2023 to the Good Health and Wellness in Indian Country.
centers for medicare and medicaid services
Medicare and Medicaid Legislative Initiatives. HHS must work with
Congress to pass legislation that: expands Part B coverage for services
furnished by licensed marriage and family therapists, licensed
professional counselors, peer counselors, and our CHAP behavioral
health aides; creates the authority for States to extend Medicaid
eligibility to all AI/AN people with household incomes up to 138
percent of the Federal poverty level; authorizes Indian Health Care
Providers (IHCP) in all States to receive Medicaid reimbursement for
health care services delivered to AI/AN people under IHCIA; extends 100
percent FMAP permanently to States for Medicaid services furnished by
urban Indian providers permanently; excludes Indian-specific Medicaid
provisions in Federal law from state waiver authority; and removes the
limitation on billing by IHCP for services provided outside the four
walls of a Tribal clinic.
Medicare Telehealth Reimbursement. Medicare telehealth expansion is
set to expire at the end of the current public health emergency.
Telehealth provided a way to care for our people during the pandemic
and should be made permanent to increase access. We request that this
subcommittee support legislation to make all Medicare telehealth
services and flexibilities permanent at the OMB encounter rate at I/T/U
facilities, authorize Medicare telehealth furnished services by
federally qualified health centers and rural health clinics be
reimbursed at the encounter rate, expand telephone-only telehealth
visits, direct physician supervision of non-physician providers be
provided remotely via telephone, and expand ``originating site''
locations from which telehealth services can be received.
health resources and services administration
Provider Shortages and Needs. The Broken Promises Report, National
Tribal Behavioral Health Agenda, National Tribal Budget Formulation
Workgroup Recommendations for 2021, and the IHS Strategic Plan all
detail how culturally responsive care is critical for the health and
well-being of AI/AN people. There are significant vacancy rates and
challenges in filling vacancies at I/T/U facilities. Some of these
challenges include: the rural location of Tribal facilities, lower
salaries, lack of incentives, and insufficient housing for providers.
For these reasons, we strongly recommend that the subcommittee
support funding for HRSA, as follows:
--Increase Tribal Set-Aside for Loan Forgiveness Program. Increase
Tribal set-asides for loan forgiveness and include mid-level
health care professionals such as Community Health Aide Program
providers in the program.
--Support Community Health Aide Program Expansion. As IHS is
expanding the CHAP program in the lower 48, HRSA must create
new funding opportunities that support national CHAP expansion.
For fiscal Year2023, we request additional funding to support
our CHAP education programs including, $4.2 million for the
Dental therapy education programs with a $1.7 million earmark
for Portland Area and $2.5 million to support Alaska and $5
million to build clinical classrooms to train community health
aide providers throughout the Portland Area.
Provider Relief Funds. Many Tribal health programs are facing
significant administrative burdens on reporting their Provider Relief
Funds. The Tribal health programs need additional time and support to
compile the necessary information for reporting. We request that the
subcommittee supports legislation that allows health care providers to
expend all Provider Relief Funds by at least 90 days after the
conclusion of the Public Health Emergency and to direct HRSA to
simplify reporting requirements for Tribal health programs.
national institutes of health
The Native American Research Centers for Health (NARCH) national
program has catalyzed multiple tribal-academic partnerships that have
resulted in many successful research projects and training
opportunities for AI/AN people interested in science and health of AI/
AN people. The NPAIHB's NARCH programs have supported and developed
countless Native researchers through this program. We request that
NARCH be a congressionally mandated funding priority as it supports
Tribal health research with the development of Tribal health leaders to
design and implement research that is responsive to Tribal needs. In FY
2023, we recommend increased funding for the NARCH program to $20
million and request that 30 percent of the funding be directed to
enhance AI/AN workforce development in parity with priorities of NIH
institutes and centers.
Thank you for this opportunity to provide recommendations to the
subcommittee on FY 2023 funding for HHS. We invite you to visit
Portland Area Tribes to learn more about the communities, utilization
of HHS funding, and health care needs in our Area. We look forward to
working with the subcommittee on our requests. For more information,
please contact Candice Jimenez, [email protected].
[This statement was submitted by Nickolaus Lewis, Chair, Northwest
Portland Area Indian Health Board.]
______
Prepared Statement of the Nursing Community Coalition
As the Nation evaluates lessons learned from COVID-19, 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, the Nursing Community Coalition (NCC)
respectfully requests that Congress continues robust and bold
investments in nursing education, workforce, and research in Fiscal
Year (FY) 2023 by supporting at least $530 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 $210 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 health care issues that
impact nursing education, research, practice, and regulation.
Collectively, the NCC represents Registered Nurses (RNs), Advanced
Practice Registered Nurses (APRNs),\1\ nurse leaders, students,
faculty, and scientists, as well as other nurses with advanced degrees.
As the largest segment of the health care profession,\2\ nursing is
involved at every point of care, which was further exemplified during
the COVID-19 pandemic. Together, we reiterate the bold request for
increased funding for Title VIII Nursing Workforce Development programs
and NINR, especially during these unprecedented times.
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\1\ APRNs include certified nurse-midwives (CNMs), certified
registered nurse anesthetists (CRNAs), clinical nurse specialists
(CNSs) and nurse practitioners (NPs).
\2\ United States Census Bureau. (2021) Who are our Health Care
Workers? Retrieved from: https://www.census.gov/library/stories/2021/
04/who-are-our-health-care-workers.html.
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through the nursing lens: providing care to all americans
As we continue to confront today's health care challenges and plan
for tomorrow, increased Federal resources for our Nation's current and
future nurses are even more imperative. As the largest dedicated
funding for nursing, Title VIII programs are instrumental in bolstering
and sustaining the Nation's diverse nursing pipeline by addressing all
aspects of nursing workforce demand. The Bureau of Labor Statistics
(BLS) projected that by 2030 demand for RNs would increase 9 percent,
illustrating an employment change of 276,800 nurses,\3\ and demand for
most APRNs is expected to grow by 45 percent.\4\
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\3\ U.S. Bureau of Labor Statistics. (2021). Occupational Outlook
Handbook- Registered Nurses. Retrieved from: https://www.bls.gov/ooh/
healthcare/registered-nurses.htm.
\4\ U.S. Bureau of Labor Statistics. (2021). 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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The need for nurses and APRNs is not only outlined by BLS, but can
be seen in communities across the Nation, including rural and
underserved areas. In fact, the American Association of Critical-Care
Nurses outlined, ``92 percent of nurses surveyed said they believe the
pandemic has depleted nurses at their hospitals and, as a result, their
careers will be shorter than they intended.'' \5\ Further, the American
Nurses Foundation's second COVID-19 impact study noted that 52 percent
of nurses during the pandemic considered leaving their position, up
from 40 percent a year earlier! \6\ If that was not enough, ``more than
one-fifth of all nurses reported they plan to retire from nursing over
the next 5 years.'' \7\
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\5\ American Association of Critical-Care Nurses. (2021). Hear Us
Out Campaign. Retrieved from: https://www.aacn.org/newsroom/hear-us-
out-campaign-reports-nurses-covid-19-reality.
\6\ American Nurses Foundation. (2022). Pulse on the Nation's
Nurses Survey Series: COVID-19 Two-Year Impact Assessment Survey.
Retrieved from: https://www.nursingworld.org/ 492857/contentassets/
872ebb13c63f44f6b11a1bd0c74907c9/covid-19-2-year-impact-assessment-
written-report-final.pdf.
\7\ National Council of State Boards of Nursing and the National
Forum of State Nursing Workforce Centers (2021) The 2020 National
Nursing Workforce Survey. Retrieved from: https://
www.journalofnursingregulation.com/article/S2155-8256(21)00027-2/
fulltext.
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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. Each program under Title VIII is
unique and plays an important role in supporting our nursing workforce.
For example, in Academic Year 2020-2021, the Advanced Nursing Education
programs, which help APRN students and nurses to practice on the
frontlines and in rural and underserved areas throughout the country,
supported more than 8,800 students, many of whom were trained in
medically underserved areas and primary care settings.\8\
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\8\ Health Resources and Services Administration. Fiscal Year 2023,
Pages 164-170. Budget Justification. Retrieved from: https://
www.hrsa.gov/sites/default/files/hrsa/about/budget/budget-
justification-fy2023.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. With more than four million nurses
throughout the country,\9\ we strongly urge historic support for these
programs in FY 2023.
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\9\ National Council of State Boards of Nursing. (2021). Active RN
Licenses: A profile of nursing licensure in the U.S. as of February 9,
2021. Retrieved from: https://www.ncsbn.org/6161.htm.
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Therefore, the Nursing Community Coalition respectfully requests at
least $530 million for the Title VIII Nursing Workforce Development
programs in FY 2023.
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. NINR's
research is aimed at reducing the impact of social determinants of
health and creating a more equitable health care system by promoting
patient-centered care across the life continuum. The translational
research by our Nation's nurses and scientists is essential to
developing new evidence-based practices to care for all patients. It is
imperative that we continue to support the necessary scientific
research, which is why the Nursing Community Coalition respectfully
requests at least $210 million for NINR in FY 2023.
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 providing bold funding for 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.
59 Members of the Nursing Community Coalition Submitting this Testimony
Academy of Medical-Surgical Nurses
Academy of Neonatal Nursing
American Academy of Ambulatory Care Nursing
American Academy of Nursing
American Association of Colleges of Nursing
American Association of Critical-Care Nurses
American Association of Heart Failure Nurses
American Association of Neuroscience Nurses
American Association of Nurse Anesthesiology
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 Nursing Informatics Association
American Organization for Nursing Leadership
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
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 Hartford Center of Gerontological Nursing Excellence
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
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 the Nutrition and Medical Foods Coalition
summary of fiscal year 2023 appropriations recommendations
_______________________________________________________________________
--Please provide the National Institutes of Health (NIH) with at
least $49 billion.
--Please provide proportional funding increases for individual NIH
Institutes and Centers to advance efforts like those being
led by the Office of Nutrition Research.
--Please provide additional, distinct funding for the emerging
Advanced Research Projects Agency for Health (ARPA-H) at
NIH, which would facilitate implementation of this
important program without supplanting ongoing NIH research
activities.
--Provide the Centers for Disease Control and Prevention (CDC) with
at least $11 billion.
--Please enhance support for the Centers for Medicare and Medicaid
Services (CMS) and work with the administration on innovative
models to facilitate coverage and access for medical foods.
_______________________________________________________________________
Thank you for the opportunity to submit testimony on behalf of the
Nutrition and Medical Foods Coalition and the diverse community of
patients that rely on medical foods. Chairwoman Murray, Ranking Member
Blunt, and distinguished members of the subcommittee, thank you for
continuing to invest in medical research, public health, and patient
care through the FY 2022 appropriations process. Please maintain this
commitment and further enhance support for medical research and public
health programs as you work with your colleagues on appropriations for
FY 2023. Please also continue to include committee recommendations
encouraging ongoing scientific progress and appropriate coverage and
access for medical foods.
about the coalition
The Nutrition and Medical Foods Coalition (NMFC) is a
collaborative, multi-stakeholder effort to promote and advance proper
use of safe and effective medical foods. Medical foods occupy a unique
niche in healthcare and are used to manage many rare and chronic
conditions for patients with unmet medical needs. NMFC is committed to
educating policymakers and the general public about the role of medical
foods in the healthcare ecosystem, while advancing an agenda focused on
increasing medical research, improving regulation and oversight, and
increasing access through appropriate insurance coverage and
reimbursement.
about medical foods
As defined by the Orphan Drug Act of 1988, a medical food is, ``a
food which is formulated to be consumed or administered enterally under
the supervision of a physician, and which is intended for the specific
dietary management of a disease or condition for which distinctive
nutritional requirements, based on recognized scientific principles,
are established by medical evaluation.''
policy recommendations
Due to the tireless work of the patient advocacy community, there
is a growing awareness of the challenges to patient access that impact
individuals and families in need of medical foods. At this time, we ask
that you consider the following:
--Due to advancement in science and the advent of medical foods for a
variety of conditions, a timely opportunity exists to promote
and provide access by removing outdated restrictions in
Medicare Part D.
--The Centers for Medicare and Medicaid Innovation (CMMI) at CMS are
interested in evaluating a variety of options to improve proper
coverage of meritorious medical foods and Congress should
encourage and collaborate on these efforts.
--Please promote coverage and access across all forms of coverage by
supporting legislation that seeks to enhance access to medical
foods and work with your colleagues to consider options to
provide a regulatory framework for medical foods that is
distinct from the drug approval pathway and capable of
identifying safe and effective products.
--There exist persistent misperceptions about medical foods that
often jeopardize coverage, including the mis-categorization of
medical foods as ``over the counter'' products in contravention
of FDA guidance, and opportunities exist to identify and
correct barriers stemming from incorrect information or a lack
of understanding. HHS through a variety of public health and
patient care mechanisms can raise awareness of medical foods
and address current gaps in understanding and care delivery.
recommended report language
Centers for Medicare and Medicaid Services Program Management
Medical Foods.--The Committee recognizes ongoing scientific
advancement and innovation in the medical foods space that has
demonstrated the impact of nutrition and related interventions to a
variety of patient communities, in addition to digestive and metabolic
health. The Committee also notes the potential cost-effectiveness of
many medical foods as part of a physician-directed treatment, including
with potential applications for non-opioid pain management. CMS is
encouraged to engage with the medical foods stakeholder community on
efforts to better understand health and cost effectiveness and approach
proper coverage paradigms that reflect the growing relevance of medical
foods within the broader treatment and care landscape.
conclusion
Please consider NMFC a resource as you work on relevant funding
issues for FY 2023 and work with your colleagues to advance health
policy legislation. If you have any questions or if you would like to
discuss medical foods coverage and access policy further with the
coalition, please consider us a resource.
[This statement was submitted by P. Keith Daigle, Acting Director,
Nutrition and Medical Foods Coalition.]
______
Prepared Statement of PACER Center
PACER Center would like to thank the subcommittee on Labor, Health
and Human Services, Education and Related Agencies (LHHS) for
soliciting the views and recommendations of public witnesses on Fiscal
Year (FY) 2023 funding.
PACER is a Statewide and national parent center founded in 1978 and
based in Minneapolis, Minnesota. PACER's mission is to enhance the
quality of life and expand opportunities for children, youth, and young
adults with all disabilities and their families so each person can
reach his or her highest potential. PACER is staffed primarily by
parents of children with disabilities. PACER also works to strengthen
engagement between families and their schools to ensure that parents
can be fully involved in the education of their children.
This testimony highlights several critical issues. First, we
respectfully request that the subcommittee match the President's FY
2023 request of $45 million for the Parent Information Centers (PIC)
program, provide $20 million for the Statewide Family Engagement
Centers program, match the President's FY 2023 request of $2.9 billion
for Part B of the Individuals with Disabilities Education Act (IDEA)
and $1.4 million for the Parent Center program funded under the
demonstration authority of the Rehabilitation Act of 1973. Second, we
request that the subcommittee maintain bill language that was included
in the FY 2022 bill that would permit States to subgrant funds under
Part C of IDEA and report language that ensures that no less than the
level provided in FY 2022 for the parent center program under
Rehabilitation Act of 1973 be provided through the FY 2023 bill.
IDEA Parent Information Centers
PACER respectfully requests that the subcommittee provide $45
million for the PIC program at the U.S. Department of Education (ED).
This level of funding is in line with President Biden's budget request
for a $15 million increase for the program. The PIC program provides
crucial assistance to families of children with disabilities, helping
parents navigate the special education process and ensuring that they
have the opportunity, knowledge, and skills to help their children with
disabilities succeed. It also assists parents in navigating the early
intervention system for infants and toddlers with disabilities and
developmental delays from birth to age three.
The PIC program funds Parent Training and Information Centers
(PTIs), Community Parent Resource Centers (CPRCs), and technical
assistance for parent centers. Under this program, each State has at
least one PTI, with a combined total of nearly 100 centers, technical
assistance centers, and CPRCs targeting underserved populations.
Centers funded under this program make valuable contributions at the
State and local level by helping schools improve services and outcomes
for students with disabilities and providing critical information on
resolving disputes that may arise between schools and families.
We appreciate the $2.7 million increase provided for the Parent
Information Centers program in FY 2022. Prior to FY 2022, the PIC
program was level funded for a decade. Despite the level funding of
this program, the number of IDEA-eligible students has increased
dramatically. In 2010, approximately 6.6 million students were served
under IDEA. In its most recent Congressional Justification, ED
estimates that nearly 7.4 million eligible students will be served in
2023. The PIC program also serves students who are eligible under
Section 504 of the Rehabilitation Act. Such students numbered 1.4
million in 2017-2018 and represented 2.7 percent of school enrollment.
These increased numbers have required the Centers funded under the PIC
program to try to do more with less. We believe that the rising
enrollment of students with disabilities warrants the requested
increase in funding for the institutions such as PACER and other PTIs
that provide crucial support to the families of students with
disabilities.
In addition to the general increase in the number of children with
disabilities and their families seeking services from centers funded
under the PIC program, ED has cited rising service demands on centers
due to the COVID-19 pandemic. In the Administration's FY 2023 budget
proposal, ED cited that the ``demand for PTI services has increased
dramatically'' during the COVID-19 pandemic including the need for
increased virtual trainings. Children with disabilities were also one
of the hardest hit populations during the pandemic, often having subpar
access to online learning opportunities and having the most disruption
to services, supports and accommodations they need to succeed
academically.
Statewide Family Engagement Centers
PACER Center also requests $20 million in funding for the Statewide
Family Engagement Centers (SFEC) program to help achieve the goal of
having an SFEC in every State and territory. PACER, in addition to
serving as a PTI center, also serves as an SFEC and as such provides
much-needed technical assistance and partnership development to States
and school districts to foster meaningful engagement with families to
further their children's academic and developmental progress. As with
the PTI program, PACER Center appreciates the $2.5 million increase
included for the SFEC program in the FY 2022 funding bill.
SFECs provide vital direct services to improve engagement between
children, parents, teachers, school leaders, counselors,
administrators, and other school personnel. While SFECs work with all
parents and schools throughout their state, many, including PACER
Center, focus on students of color, English learners, and recent
immigrant children working to integrate into their new communities.
Research has shown that family engagement in a child's education
increases student achievement, improves attendance, reduces the dropout
rate, and advances the emotional and physical well-being of children.
Students whose families are involved in their children's academic
success attend school more regularly, earn better grades, enroll in
more challenging academic programs, and have higher graduation rates.
The SFEC program harnesses effective practices to help schools and
districts implement systematic family engagement programs that build
ties between the community, families, students, and schools.
idea
We also request a $2.9 billion increase in Part B of the
Individuals with Disabilities Education Act (IDEA), matching President
Biden's FY 2023 budget proposal. IDEA funding for Part B is critical in
our home state of Minnesota and around the country. The Federal
resources provided to meet the guarantee of a free appropriate public
education under IDEA are critical as States and local school systems
construct their annual budgets. This is especially true now as
educators help children with disabilities recover lost learning time
resulting from the COVID-19 pandemic. As stated above, the pandemic hit
children with disabilities among the hardest and States, school
districts, and schools need this significant increase in Federal
resources to meet the needs of their children.
While this focus on pandemic recovery and the need for resources is
more recent, IDEA's current funding level continues to fall short of a
path to full funding of Part B of IDEA. The Administration's budget
estimates that their call for a $2.9 billion increase will raise the
Federal share to 15 percent. This amount of a funding increase will
restart the program on a path to full funding.
With respect to Part C of IDEA, we request that the subcommittee
maintain bill language that would permit States to subgrant Part C
funds to organizations to carry out Part C State-level activities. This
authority has been extremely useful in Minnesota to allow the State to
reach families eligible for Part C across the State by avoiding the
need to conduct such activities via a contract.
rehabilitation act parent training and information centers
We also support the Administration's request to increase funding by
$1.4 million under the Demonstration and Training Authority in the
Rehabilitation Act of 1973 for the National Parent Training and
Information Center as well as the eight Regional Parent Training and
Information Centers. The Administration's FY 2023 budget request
documents how existing funding levels are insufficient to support the
current workload. The budget request would allow the Regional Parent
Training and Information Centers to expand collaboration and enhance
services to consumers in their respective regions.
______
Prepared Statement of Peel Ann D. deg.
Prepared Statement of Ann D. Peel
Madam Chairwoman,
Amyloidosis is a rare and usually fatal disease. There is no known
cure for amyloidosis, an abnormal folding protein disease that can
destroy various major organs. I am submitting this testimony to request
that the Committee include language in the fiscal year 2023 Labor,
Health and Human Services report expanding NIH research funding and
awareness efforts on amyloidosis.
The COVID pandemic has brought about an awareness of the need to
address health issues through increased investment in research. This
investment in COVID has resulted in research that is saving lives
through vaccines, early diagnosis and programs of awareness. It has
heightened the need to accelerate research and awareness of
amyloidosis, to prevent deaths, and to help patients with amyloidosis
related multi-organ dysfunction.
A further commitment to amyloidosis research, I believe, would
prove to be a lifesaving investment.
I want to thank this subcommittee for its efforts to raise
awareness and funding for issues related to amyloidosis. Progress has
been made on research into treatment and awareness. Efforts made by NIH
and amyloidosis centers around the country are resulting in many more
people being diagnosed and treated for amyloidosis than a decade ago.
However, the causes of amyloidosis remain elusive. Amyloidosis can
cause heart, kidney, or liver dysfunction and failure and severe
neurological problems. Left untreated, the average survival is just
months from the time of diagnosis.
I have endured two stem cell transplants and chemotherapy in order
to fight the deadly disease amyloidosis and have been one of the lucky
ones to survive the disease for 19 years. This was due to the
intensive, life-saving treatment that I have received through the
Amyloidosis Center at Boston University School of Medicine and Boston
Medical Center.
I continue to participate in a clinical trial that looks for ways
to diagnose and treat amyloidosis.
what is amyloidosis?
I have been treated for primary amyloidosis, which is
immunoglobulin light chain (AL) amyloidosis. This type of amyloidosis
occurs when cells in the bone marrow produce an abnormal amyloidogenic
protein and these form amyloid fibrils that are deposited in major
organs, such as the heart, kidney and liver.
These misfolded proteins clog the organs until they are no longer
able to function-sometimes at a very rapid pace.
In addition to AL amyloidosis, a blood or bone marrow disorder,
there are also cases of inherited or familial amyloidosis and secondary
or reactive amyloidosis. Familial amyloidosis may be present in a
significant number of African Americans. Secondary or reactive
amyloidosis occurs in patients with chronic infections or inflammatory
diseases.
All three types of amyloidosis, left undiagnosed or untreated, are
fatal.
There is no explanation for how or why amyloidosis develops and
there is no known reliable cure. Thousands of people die because they
were diagnosed too late to obtain effective treatment.
Thousands of others die never knowing they had amyloidosis. The
small numbers of those with amyloidosis who are able to obtain
treatment face challenges that can include high dose chemotherapy and
stem cell replacement or organ transplantation.
Researchers have not been able to determine the root cause of the
disease or an effective low-risk treatment. Amyloidosis can literally
kill people before they even know that they have the disease.
Older Americans are susceptible to heart disease due to amyloid
formed from the non-mutated form of the same protein.
One of the major concerns is that current methods of treatment are
risky and unsuitable for many patients. Even with successful initial
treatment, amyloidosis remains a threat since it can recur years later.
how is amyloidosis treated?
Boston University School of Medicine and other centers for
amyloidosis treatment have found that high dose intravenous
chemotherapy followed by stem cell replacement, or rescue, is an
effective treatment in selected patients with AL amyloidosis.
Abnormal bone marrow cells are killed through high dose
chemotherapy and the patient's own extracted blood stem cells are
replaced in order to improve the recovery process.
The high dose chemotherapy and stem cell transplantation and other
new drugs have increased the remission rate and long-term survival
dramatically. However, this treatment can also be life threatening and
more research needs to be done to provide less risky forms of
treatment.
fiscal year 2023: more research is needed
The COVID pandemic has illustrated the need to accelerate research
and treatment on diseases such as amyloidosis. Here are the main points
for taking action in the fiscal year 2023 bill:
1. Thousands of people die because they were diagnosed with
amyloidosis too late to obtain effective treatment. Many people are
diagnosed after the point that they are physically able to undertake
treatment.
2. Thousands of others die never knowing they had amyloidosis.
3. The small numbers of those with amyloidosis who are able to
obtain treatment face challenges that can include high dose
chemotherapy and stem cell replacement or organ transplantation.
4. Additional funding for amyloidosis research and equipment is
needed to increase the survival rate and to find safe treatments to
help more patients.
5. Although amyloidosis is often fatal, Federal and foundation
support over the past years has given hope for successful new
treatments.
6. More efforts are needed to alert health professionals to
identify this disease, to accelerate research and awareness of the
disease, and to help patients with amyloidosis related multi-organ
dysfunction.
Amyloidosis is vastly under-diagnosed. Although I was diagnosed at
a very early stage of the disease, many people are diagnosed after the
point that they are physically able to undertake treatment.
I believe there are many more cases of amyloidosis than are known,
as the disease can escape diagnosis and patients die of ``heart
failure,'' ``liver failure,'' etc. In reality, some of these people had
amyloidosis.
Perhaps amyloidosis is not as rare a disease as we think.
Through the leadership of this Committee and the further
involvement of the U.S. Government, several positive developments have
occurred. Research supported by the National Institute of Neurologic
Disorders and Stroke at NIH and the Office of Orphan Products
Development at the Food and Drug Administration led to successful
repurposing of a generic drug that markedly slows progression of
familial amyloidosis.
Madam Chairwoman, the United States Congress and the Executive
branch working together are key to finding a cure for and alerting
people to this terrible disease. Expanding funding for research and
treatment of amyloidosis is key to preventing death from amyloidosis.
I want to use my experience with this rare disease to help save the
lives of others. With your support, more can be done to help me achieve
this dream.
______
Prepared Statement of the Personalized Medicine Coalition
Chairwoman Murray, Ranking Member Blunt 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 (FY) 2023 appropriations and to
highlight the importance of NIH-funded research to personalized
medicine. PMC is a nonprofit education and advocacy organization
comprised of more than 220 institutions from across the health care
spectrum who have come together to support this growing field. We
appreciate the sustained, robust funding for NIH provided by the
subcommittee in recent years, which has allowed NIH to continue
building the foundation of scientific knowledge underpinning
personalized medicine in the midst of unprecedented challenges.
Sustaining this momentum will be essential to support further discovery
of targeted health care interventions for patients with cancer as well
as rare, common, and infectious diseases. As the subcommittee begins
work on the FY 2023 Labor, Health and Human Services, Education and
Related Agencies appropriations bill, we request at least $49.048
billion for NIH's base program level budget. We also urge you to ensure
that funds for targeted programs, like those supporting the new
Advanced Research Projects Agency for Health (ARPA-H) and pandemic
preparedness, supplement this request for NIH's base program level
budget.
Our funding request for FY 2023 amounts to a $4.1 billion (or
nearly 8 percent) increase to the NIH budget, including funding for
specific initiatives under the 21st Century Cures Act (Cures Act). This
request would allow for meaningful growth above inflation in NIH's base
budget and expand NIH's capacity to support progress in personalized
medicine.
Personalized medicine, also called precision or individualized
medicine, is an evolving field in which physicians use diagnostic tests
to determine which medical treatments will work best for each patient
or use medical interventions to alter molecular mechanisms that impact
health. By combining data from diagnostic tests with an individual's
medical history, circumstances, and values, health care providers can
develop targeted treatment and prevention plans with their patients.
Personalized medicine promises to detect the onset of disease, pre-empt
its progression, and improve the quality, accessibility, and
affordability of health care.\1\ By increasing the government's
investment in science at this pivotal moment, Congress can help advance
a new era of personalized medicine that promises a brighter future for
patients and health systems.
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\1\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
Corporate/file/PMC_The_
Personalized_Medicine_Report_Opportunity_Challenges_and_the_Future.pdf.
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i. the role of nih in personalized medicine
Decades of NIH-funded biomedical research on the genetic and
biological underpinnings of disease have contributed to the development
of personalized treatments that patients are benefitting from today. As
of 2020, this research has informed the development of more than 286
personalized treatments \2\ and over 166,703 genetic testing
products.\3\ These numbers continue to grow, with personalized
medicines accounting for more than a quarter of all new drugs approved
by FDA each of the past 7 years and with more than half of new
personalized treatments being approved for indications outside of
oncology.\4\ Nearly 20 years since the historic completion of the Human
Genome Project in 2003, researchers recently finished deciphering the
final 8 percent of the roughly 3-billion-base human genome sequence
that was previously impossible to decode.\5\ Having a complete, gap-
free reference sequence of human DNA will further improve our
understanding of how genes influence human health. In recent years,
scientists have also made notable progress in assessing biomarkers
beyond the genome, such as proteomic and metabolic biomarkers.\6\
Harnessing the power of personalized medicine to better diagnose,
treat, and prevent disease will require a continued commitment by
Congress to fund NIH's basic and translational research.
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\2\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
Corporate/file/PMC_The_
Personalized_Medicine_Report_Opportunity_Challenges_and_the_Future.pdf.
\3\ https://doi.org/10.1002/ajmg.c.31881.
\4\ https://www.personalizedmedicinecoalition.org/Userfiles/PMC-
Corporate/file/Personalized_
Medicine_at_FDA_The_Scope_Significance_of_Progress_in_2021.pdf.
\5\ https://www.nih.gov/news-events/nih-research-matters/first-
complete-sequence-human-
genome.
\6\ https://www.personalizedmedicinecoalition.org/Userfiles/PMC-
Corporate/file/PMC_The_
Personalized_Medicine_Report_Opportunity_Challenges_and_the_Future.pdf.
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ii. sustaining basic and translational research for personalized
medicine
NIH is leading much of the scientific discovery for personalized
medicine, which begins with basic research that generates fundamental
knowledge about the molecular basis of a disease and with translational
research aimed at applying that knowledge to develop a treatment or
cure. Many institutes and centers at NIH are contributing research
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), the National
Heart, Lung and Blood Institute (NHLBI), the National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK), the National Center
for Advancing Translational Sciences (NCATS), and the National
Institute on Minority Health and Health Disparities (NIMHD). A robust
base budget for NIH in FY 2023 would protect the agency's foundational
role in the identification and development of treatments, technologies,
and tools for personalized medicine.
Cancer care has been and will continue to be profoundly influenced
by new personalized medicine approaches for detecting and treating
early- and late-stage cancers. In 2021, for example, FDA approved two
new chimeric antigen receptor (CAR) T-cell-based immunotherapies for
patients with refractory large B-cell lymphoma and refractory multiple
myeloma.\7\ These treatments work by genetically re-engineering a
patient's own immune cells to combat cancer. Over the past decade,
personalized treatments harnessing the immune system have also driven
declines in mortality for lung cancer and melanoma. Recognizing the
potential of multi-cancer early-detection tests designed to find
evidence of cancer wherever it occurs in the body from a simple blood
draw, NCI is also exploring large national trials to evaluate these
novel tests and is already funding the collection of blood samples to
serve as controls. These tests may provide less invasive testing
options that could detect a patient's cancer at early stages when
treatment may be more effective and less costly.
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\7\ https://www.personalizedmedicinecoalition.org/Userfiles/PMC-
Corporate/file/Personalized_
Medicine_at_FDA_The_Scope_Significance_of_Progress_in_2021.pdf.
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Basic and translational research also offers opportunities for
personalized medicine beyond oncology, especially for rare diseases.
Although individually rare, rare diseases collectively affect an
estimated 25 to 30 million Americans. 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. Over the past decade,
programs at NCATS have helped shift the scientific approach to
researching rare diseases from one disease at a time to many diseases
at a time. 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 and diagnostic options.
Accelerating this research can help shorten the average of 6 years it
takes for a rare disease patient to find the correct diagnosis and
lower the nearly $1 trillion annual economic burden of rare
diseases.\8\
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\8\ https://everylifefoundation.org/burden-study/.
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Other patients are living with highly prevalent diseases where
personalized medicine can offer better treatments or a cure. For
example, the Alzheimer's Association estimates that 6.2 million
Americans are living with Alzheimer's disease.\9\ Despite increasing
numbers of Alzheimer's diagnoses, researchers still need to study the
genetic underpinnings of Alzheimer's disease to more fully understand
its complexity. To shorten the time between the discovery of potential
drug targets and the development of new drugs, the Accelerating
Medicines Partnership (AMP) for Alzheimer's disease, led by NIH, has
identified over 500 drug targets, and in 2021 the public-private
partnership launched a second iteration to enable a personalized
medicine approach to researching new treatments.\10\ Other new and
ongoing AMP projects aim to facilitate the development of gene
therapies for rare diseases as well as treatments and diagnostics for
type 2 diabetes, rheumatoid arthritis, lupus, Parkinson's disease,
common metabolic diseases like kidney and heart disease, and
schizophrenia.
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\9\ https://www.alz.org/media/Documents/alzheimers-facts-and-
figures.pdf.
\10\ https://www.nih.gov/research-training/accelerating-medicines-
partnership-amp/alzheimers-disease.
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Ensuring that scientific breakthroughs in personalized medicine are
impactful to all patients will require the inclusive and equitable
representation of patients with diverse characteristics and health
needs in research and clinical trials. Multiple initiatives at NIH to
improve research policies and incorporate diverse perspectives into
solving complex scientific problems--such as through the UNITE
initiative, NHGRI's action agenda for a diverse genomics workforce, and
the forthcoming NIH-Wide Diversity, Equity, Inclusion, and
Accessibility Strategic Plan--will play a key role in addressing these
disparities, as will the research led by NIMHD on improving minority
health and understanding factors contributing to health disparities.
iii. accelerating personalized medicine research
Increasing 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 provided for by Congress in the Cures Act.
The first of these initiatives made possible in part by the Cures
Act, the All of Us\TM\ Research Program, was launched in 2018 to begin
collecting genetic and health information from one million volunteers
as part of a decades-long research project. As of March 2022, over
475,000 individuals consented to participate, with more than 326,000
being fully enrolled.\11\ More than 80 percent of the enrolled
individuals are from groups historically underrepresented in
research\12\ such as seniors, women, Hispanics and Latinos, African
Americans, Asian Americans, and members of the LGBTQ community.
Extensive efforts are also underway to engage American Indian and
Alaska Native communities. Reaching a significant milestone, the
program recently released its first dataset of nearly 100,000 whole
genome sequences,\13\ and over 1,100 research projects have been
launched using the program's groundbreaking dataset. Later this year,
the program also plans to begin sharing results with participants on
their hereditary disease risk and medication-gene interactions. Pooling
health care data across large datasets that span populations and
disease areas will play a key role in advancing research for
personalized medicine approaches to care.
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\11\ https://www.joinallofus.org/newsletters/2022/march.
\12\ https://officeofbudget.od.nih.gov/pdfs/FY23/br/
Overview%20of%20FY%202023%20Presidents percent20Budget.pdf.
\13\ https://directorsblog.nih.gov/2022/03/29/nihs-all-of-us-
research-programs-first-nearly-100000-complete-human-genome-sequences-
set-stage-for-new-discoveries/.
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The second initiative spurred by the Cures Act, the Beau Biden
Cancer Moonshot, aims to transform the way cancer research is conducted
by fostering collaboration and data sharing. As it enters its seventh
year, the Cancer Moonshot has grown to support over 240 new research
projects \14\ and has established a significant infrastructure for
conducting cancer research and sharing resources.\15\ Collaborations
formed by the program include the Partnership for Accelerating Cancer
Therapies (PACT), which consists of 12 pharmaceutical companies, the
Foundation for NIH, and FDA working together to identify, develop, and
validate biomarkers advancing the discovery of new immunotherapy
treatments. This year, President Biden announced a bold new goal for
the initiative of ending cancer as we know it. Funding provided by the
Cures Act ends in FY 2023, and additional base budget funding will help
NCI sustain this progress that has already been made in cancer research
once the Cures Act funding expires.
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\14\ https://doi.org/10.1016/j.ccell.2021.04.015.
\15\ https://www.cancer.gov/research/annual-plan/directors-message.
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iv. conclusion
PMC appreciates the opportunity to highlight NIH's importance to
the continued success of personalized medicine. PMC believes that basic
and translational research at NIH is key to bringing us closer to a
future in which every patient benefits from an individualized approach
to health care. Therefore, we urge the subcommittee to appropriate at
least a $49.048 billion budget to support existing centers and programs
at NIH, in addition to funding Congress may provide for targeted
initiatives.
[This statement was submitted by Cynthia A. Bens, Senior Vice
President, Public Policy, Personalized Medicine Coalition.]
______
Prepared Statement of the Physician Assistant Education Association
The Physician Assistant Education Association (PAEA), representing
the 287 accredited PA programs in the United States that graduate more
than 10,000 students each year, appreciates the opportunity to submit
the following testimony on the Association's funding priorities for
Fiscal Year (FY) 2023. Throughout the COVID-19 pandemic, the issue of
provider shortages, particularly in historically underserved
communities, has received renewed attention. As practicing providers
have experienced unprecedented strain during the past 2 years,
increasing rates of burnout and attrition has made congressional action
to support workforce development an urgent imperative. To address these
challenges and mitigate further projected workforce shortages, it is
critical that Congress make bold investments in both proven and new
programs that support the development of a sufficient supply of well-
trained, diverse providers in the communities where they are needed
most.
PAEA joins with the Health Professions and Nursing Education
Coalition, a national alliance of more than 90 organizations, to
request a total of $1.51 billion in FY23 for the Title VII health
professions and Title VIII nursing workforce development programs
administered by the Health Resources and Services Administration
(HRSA). This funding level, a significant increase from the $799
million allocated for Title VII and VIII in FY22, would provide the
resources necessary to meet workforce demand and promote equitable
outcomes for all patients.
background on the pa profession and pa education
As Congress seeks to bolster the health workforce following the
pandemic, PAs are uniquely equipped to be a key part of the solution
given the accelerated training model and wide practice flexibility that
has characterized the profession since its inception. Following their
baccalaureate-level education, all PA students complete a rigorous
graduate-level curriculum based upon the more than 100-year-old model
of medical student training. The typical PA program curriculum consists
of approximately 1 year of classroom-based training followed by 1 year
of clinical rotations under the supervision of practicing preceptors.
During their clinical year, students complete placements in family
medicine, emergency medicine, surgery, pediatrics, women's health, and
behavioral health in a wide array of practice settings. This generalist
approach to PA education provides graduates with the necessary
knowledge and experience to switch specialties over the course of their
careers based upon workforce needs without additional required post-
graduate training.
In recognition of the quality of services rendered by PA graduates
and in response to significant projected physician shortages, the
number of PA programs has risen significantly in the past decade,
growing from 149 in 2010 to 287 as of 2022. While the promise of this
expansion to combat workforce shortages is considerable, its
sustainability depends upon PA programs having access to the resources
necessary to provide high-quality training to students. Despite
widespread vaccine availability and reduced pressure on health systems
as COVID-19-related hospitalizations have fallen, nearly 85 percent of
PA programs indicate that their existing clinical training sites
continue to take fewer students than prior to the pandemic.\1\ This
reduction in clinical education capacity is the most daunting challenge
facing PA programs across the Nation and, if left unaddressed,
threatens the ability of programs to meet demand for graduate services.
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\1\ Physician Assistant Education Association. (2021). COVID-19
Rapid Response Report 3. https://paea.edcast.com/insights/ECL-c621408d-
c82a-43f5-a067-75a03494d8be..
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In response to this challenge, HRSA has taken steps to expand
clinical site access but currently has limited resources to address the
crisis. In September 2021, HRSA released the Primary Care Training and
Enhancement--Physician Assistant Rural Training funding opportunity,
explicitly allowing grantees to pay preceptors to train students in
rural communities in order to expand access to placements. While this
program is well-aligned with the needs of PA education, current PCTE
funding levels only allowed 7 PA programs to receive an award through
this competition. If the program is to meaningfully achieve its
intended aim, significantly increased funding will be needed to broaden
the scope of this opportunity.
Beyond PCTE grants, an additional critical source of support to
expand clinical education capacity is Area Health Education Centers
(AHECs), which facilitate clinical placements for PA and other health
professions students in underserved areas through community
partnerships. In academic year 2020-2021, AHEC grantees facilitated
over 27,000 clinical rotations for health professions students with
approximately 70 percent taking place in medically underserved
communities and 60 percent occurring in primary care settings.\2\ To
further expand clinical education capacity and meet workforce demand,
PAEA urges the subcommittee to support a funding level of $98 million
for PCTE grants and $86 million for AHECs in FY23.
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\2\ Health Resources and Services Administration. (2022).
Justification of Estimates for Appropriations Committees. https://
www.hrsa.gov/sites/default/files/hrsa/about/budget/budget-
justification-fy2023.pdf.
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promoting workforce diversity
As Congress works to address the toll that COVID-19 has taken on
the Nation's health workforce, particular emphasis must be placed on
reducing barriers that prevent the workforce from reflecting the
communities that it serves. Across disciplines, students from
marginalized communities often face daunting socioeconomic challenges
to successfully entering the health professions and practicing in the
communities where their services are needed most. In the case of PA
education, only 3.9 percent of first-year PA students identify as Black
or African American and 9.1 percent identify as Hispanic or Latino as
of 2019.3 Representation steadily declines among graduates with 3
percent identifying as Black or African American and 6.8 percent
identifying as Hispanic or Latino.\3\
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\3\ Physician Assistant Education Association. (2020). By the
Numbers: Student Report 4: Data from the 2019 Matriculating Student and
End of Program Surveys. https://paeaonline.org/wp-content/uploads/
imported-files/student-report-4-updated-20201201.pdf.
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To combat these trends and promote the availability of culturally
competent care for patients, PAEA believes it is critical to
significantly increase the scale of HRSA's existing workforce diversity
programs, which aim to provide support to marginalized students
throughout the continuum of their education. Specifically, the Health
Careers Opportunity Program (HCOP) provides targeted K-16 programming
targeted to marginalized students to expose them to the possibility of
pursuing a career in the health professions and ensure they have the
resources necessary to matriculate into a program. In FY20, HCOP
grantees provided this type of support to 2,452 underrepresented
minority students interested in pursuing careers in the health
professions.\2\
Beyond HCOP, HRSA programs also seek to ensure that students are
retained in their programs through graduation. The Scholarships for
Disadvantaged Students (SDS) program provides financial support to meet
this aim. In FY20, SDS supported more than 2,600 disadvantaged health
professions students with 65 percent being from underrepresented
minority communities.\2\ To ensure that these programs are scaled to
meet patient demand for a diverse health workforce, PAEA urges the
subcommittee to fund HCOP and SDS at a level of $30 million and $103
million, respectively, for FY23.
combating maternal mortality disparities
While COVID-19 has been the predominant focus of national public
health policy since 2020, other long-standing public health challenges
have persisted throughout the pandemic. Currently, the United States
has one of the highest maternal mortality rates among industrialized
nations at a rate of 23.8 deaths per 100,000 live births as of 2020
with many deaths concentrated in historically underserved areas.\4\
Black or African American women continue to be disproportionately
affected by this crisis with a mortality rate of 55.3 deaths per
100,000 live births--nearly three times the rate of non-Hispanic white
women.\4\ While the causes of maternal mortality disparities are
multifactorial, a key concern is limited access to well-trained
providers with the capacity to provide the culturally competent care
that patients deserve.
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\4\ Centers for Disease Control and Prevention. (2022). Maternal
Mortality Rates in the United States, 2020. https://www.cdc.gov/nchs/
data/hestat/maternal-mortality/2020/maternal-mortality-rates-2020.htm.
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Ensuring the availability of a high-quality workforce requires
investments in clinical training in the communities where care is most
needed. However, at a time when providers are most needed to address
this issue, the availability of training opportunities for students is
significantly declining. Nearly 75 percent of PA programs indicate that
it is either harder or much harder to secure clinical rotations in
obstetrics/gynecology/women's health than prior to the COVID-19
pandemic--a critical threat to the ability of PA education to respond
to demand for providers.\1\
Recognizing this challenge, Congress authorized a new Rural
Maternal and Obstetric Care Training demonstration program in the
omnibus appropriations legislation enacted for FY22. This program is
intended to provide funding to PA education and other health
professions programs to support clinical training opportunities in
community-based settings with the aim of strengthening the pipeline and
increasing the supply of providers practicing in these communities.
PAEA strongly supports this program's authorization and urges the
subcommittee to provide $5 million for its initiation in FY23.
fiscal year 2023 recommendation
To mitigate the toll that COVID-19 has taken on providers across
the country, Congress must seize the opportunity to make bold
investments to strengthen the supply and diversity of the health
workforce and ensure access to high-quality care for all patients. The
Association joins the Health Professions and Nursing Education
Coalition in requesting $1.51 billion in funding for the Title VII
health professions and Title VIII nursing workforce development
programs in FY23. PAEA thanks the subcommittee for the opportunity to
submit testimony and looks forward to the opportunity to serve as a
resource to members and staff.
[This statement was submitted by Kara Caruthers, MSPAS, PA-C,
President, Physician Assistant Education Association.]
______
Prepared Statement of the Physicians Committee for Responsible Medicine
On behalf of the Physicians Committee for Responsible Medicine,
thank you for the opportunity to submit this written testimony. The
Physicians Committee is a nonprofit organization with more than 175,000
members worldwide that works to make medical research more effective
and ethical. As the subcommittee crafts the FY 2023 Labor, Health and
Human Services, Education, and Related Agencies Appropriations bill,
the Physicians Committee asks that you please consider the following
provision to increase transparency and public accountability regarding
research funded by the National Institutes of Health (NIH).
the problem
Research transparency and accountability are vital to ensure that
the United States remains a global leader in medical research. While
the governments of other countries-including the United Kingdom,
Canada, and the entire European Union-collect and publish detailed
information on the number of animals used in research and testing, the
United States lags far behind. Estimates of the number of animals used
each year in U.S. laboratories vary wildly-from 10 million to 110
million \1\--and the vast majority of those animals are utilized by
federally funded labs. The drastic difference in estimates demonstrates
that accurate reporting is needed.
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\1\ Carbone, L. Estimating mouse and rat use in American
laboratories by extrapolation from Animal Welfare Act-regulated
species. Sci Rep 11, 493 (2021). https://doi.org/10.1038/s41598-020-
79961-0.
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The U.S. commitment to the ``3Rs'' principles of refinement,
reduction, and replacement of animals in research is described in the
Guide for the Care and Use of Laboratory Animals,\2\ the use of which
is required by the Public Health Service Policy. Integral to this
commitment are the accurate counting of animals used in experiments and
the accurate reporting of Federal funding dedicated to projects
involving animals. It has been the NIH's policy since 1985 to collect
an ``average daily inventory'' \3\ of vertebrate animals housed in
research facilities that wish to receive agency funding. This
``average'' is highly inaccurate; it is only a crude estimate of how
many animals are present in the facility on any given day, not an
annual total, and facilities are only required to file such
documentation every 4 years as part of an Animal Welfare Assurance.
Further, copies of these documents are available to the public only
through Freedom of Information Act requests, making large-scale
tracking and accountability efforts impossible.
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\2\ National Research Council. 2011. Guide for the Care and Use of
Laboratory Animals: Eighth Edition. Washington, DC: The National
Academies Press. https://doi.org/10.17226/12910.
\3\ National Institutes of Health, Office of Laboratory Animal
Welfare. PHS Policy on Humane Care and Use of Laboratory Animals.
https://olaw.nih.gov/policies-laws/phs-policy.htm.
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the solution
Congress must improve the accuracy and transparency of animal use
in federally funded research by instructing the NIH to do two things:
1. NIH must provide a plan to Congress detailing how the agency
will annually collect an accounting of vertebrate animals from
all agency-funded researchers, organized by species and pain
and distress category. The plan should also require the NIH to
detail how it will provide public access to this information.
2. NIH must also provide a plan for tracking and publishing
information on NIH-funded projects involving the use of
vertebrate animals. The NIH currently collects such information
with every grant application using the Research & Related Other
Project Information form, which asks applicants to answer
``Yes'' or ``No'' to the question ``Are Vertebrate Animals
Used?'' \4\ Making the answer to this question searchable for
each funded project via the NIH's Research Portfolio Online
Reporting Tools website \5\ or a similar database is a vital
step toward greater transparency of Federal research spending.
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\4\ National Institutes of Health. ``G.220--R&R Other Project
Information Form.'' Accessed August 20, 2020. https://grants.nih.gov/
grants/how-to-apply-application-guide/forms-e/general/g.220-r&r-other-
project-information-form.htm.
\5\ National Institutes of Health. ``RePORTER.'' Accessed February
4, 2022. https://reporter.nih.gov/.
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recent history
A similar requirement was included in the House-passed H. Rpt. 117-
96 and the Senate draft FY 2022 committee report.\6\ However, the
finalized text in the omnibus joint explanatory statement (JES) failed
to include important specifics included in the aforementioned committee
reports, and detailed in the requested language below, including the
directives to (1) create plans for collecting and reporting animal
numbers and species used and (2) identifying which NIH grants involve
animals. Instead, the omnibus FY 2022 JES language requested a report
from the NIH outlining a plan to ``increase the accuracy and
transparency of the data collected'' and to detail ``how NIH will
address any incomplete reporting of NIH-funded research with animals.''
To ensure that the forthcoming report meaningfully achieves the goals
described above, it is crucial that these specifics are restored.
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\6\ United States Senate Committee on Appropriations, ``Chairman
Leahy Releases Remaining Nine Senate Appropriations Bills.'' https://
www.appropriations.senate.gov/imo/media/doc/LHHSREPT_FINAL3.PDF.
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requested report language
``Collection and Reporting of Animal Research Numbers and Agency
Funding.--The Committee recognizes that Congress has long expressed an
interest in reducing the use of nonhuman animals in NIH-funded research
and replacing animals with valid, reliable alternatives. In the
National Institutes of Health Revitalization Act of 1993, Congress
first requested that the agency create a plan for doing so. The
Committee also recognizes the scientific community's stated commitment
to the ''three Rs'' of replacement, reduction, and refinement. Integral
to that commitment are the accurate counting of animals used in
research and testing and the accurate reporting of NIH funding
dedicated to projects involving animals. The Committee recognizes that
it has been NIH's policy since 1985 to collect an ''average daily
inventory'' of vertebrate animals housed in research facilities that
wish to receive agency funding. The Committee understands that domestic
facilities are required to file such documentation every 4 years as
part of an Animal Welfare Assurance and that copies of the documents
are available to the public only through Freedom of Information Act
requests. The Committee anticipates the report requested in the Joint
Explanatory Statement for the Consolidated Appropriations Act, 2022
(Public Law 117-103) outlining a plan to improve the accuracy and
transparency of collected data. However, the Committee directs NIH to
include in the forthcoming report how the agency plans to annually
collect from each research facility that receives NIH funding the total
number of animals bred, housed, and used in the previous year, sorted
by species and pain and distress categories. Further, the Committee
directs NIH to include in the report a draft form for collecting this
information annually. NIH should also include details on how the agency
will create a publicly accessible online database for dissemination of
the information collected via the new annual forms. The Committee
directs NIH to include in its report a plan for implementing a system
that identifies which agency-funded projects involve the use of animals
and makes the information publicly accessible. The Committee recognizes
that NIH currently collects such information with every grant
application using the Research & Related Other Project Information
form, which asks applicants to answer ''Yes'' or ''No'' to the question
''Are Vertebrate Animals Used?'' NIH's plan should ensure that the
answer to that question for each funded project is searchable via the
Expenditures and Results module of NIH's Research Portfolio Online
Reporting Tools website.''
[This statement was submitted by Ryan Merkley, Director of Research
Advocacy, Physicians Committee for Responsible Medicine.]
______
Prepared Statement of the Population Association of
America/Association of Population Centers
Thank you, Chair Murray and Ranking Member Blunt 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
2023, we urge the subcommittee to adopt the following funding
recommendations for agencies under its jurisdiction: $49 billion, NIH;
$210 million, NCHS; $815 million, IES; and $814 million, BLS. In
addition, we urge the subcommittee to accept report language,
previously submitted, regarding population research programs and
surveys supported by the National Institute on Aging and Eunice Kennedy
Shriver National Institute on Child Health and Human Development at the
National Institutes of Health.
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 Chair Murray and Ranking Member Blunt 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 $49 billion for the NIH, a $4.1 billion increase over the NIH's
program level funding in fiscal year 2022. In addition, we urge the
Committee to ensure that any funding for the new Advanced Research
Project Agency for Health (ARPA-H), supplements the $49 billion
recommendation for NIH's base budget, rather than supplants the
essential foundational investment in the NIH. Finally, we urge that NIA
and NICHD, as components of the NIH, receive commensurate funding
increases (7.9 percent) in fiscal year 2023.
national institute on aging
The NIA Division of Behavioral and Social Research (DBSR) is the
primary source of Federal support for basic population aging research.
The NIA Division of Behavioral and Social Research (DBSR) supports a
scientifically innovative population aging research portfolio that
reflects some of the Institute's, and nation's, highest scientific
priorities including Alzheimer's disease and social inequality in
health and the aging process. With additional support in fiscal year
2023, DBSR could expand its existing research portfolio to encourage
more research on the short and long-term social, behavioral, and
economic health consequences of COVID on older people and their
families. The population research community is especially eager to see
NIA use existing large-scale, longitudinal and panel surveys, such as
the Health and Retirement Study, the National Health and Aging Trends
Study, and Understanding America Study, to facilitate scientific
research on the complex, multifaceted effects of the pandemic on older,
diverse populations. Further, the field believes NIA should sustain its
support for developing data infrastructure to promote research on
racial, ethnic, gender, and socioeconomic disparities in health and
well-being in later life and the long-term effects of early life
experiences. With additional funding in fiscal year 2023, DBSR could
support these activities as well as fully fund the NIA 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 12 universities nationwide and proceed with plans to
integrate the population sciences into the Institute's Geroscience
research agenda.
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
Study of Adolescent to Adult 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.
Given the dearth of data being collected regarding the short and long-
term social, economic, developmental, and health effects of the COVID
pandemic on children and families, the field of population research
urges NICHD to consider expanding data collection through existing
surveys and the NICHD Population Dynamics Centers Research
Infrastructure Program. Population scientists support NICHD exploring
the use of existing and new mechanisms to enhance research regarding
the effects of COVID on fertility trends and reproductive health
overall and developing informed frameworks for conceptualizing and
measuring social determinants of health, including structural racism.
With additional funding in fiscal year 2023, the Institute could
sustain its existing population research activities as well as pursue
our field's recommendations regarding these additional research
activities related to COVID and social determinants of health.
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 for NCHS to
continue monitoring 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 and APC, as members of the Friends of NCHS,
recommend the agency receive $210 million in fiscal year 2023, which is
$30 million above its fiscal year 2022 appropriation, restoring the
agency to its FY2010 inflation adjusted level. In addition, our
organizations urge the subcommittee to reiterate its support for the
agency's participation in the Centers for Disease Control (CDC) Data
Modernization Initiative (DMI). NCHS should be benefitting from DMI
funds, as the Committee intended, and applying them to make long
overdue and necessary systematic and technological upgrades as well as
facilitating enhanced use of Electronic Health Records. PAA and APC are
especially supportive of NCHS using additional funding to improve the
quality of vital statistics data to inform research regarding the
underlying causes of mortality and health disparities across different
population and geographies.
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 grateful to the subcommittee for providing the agency with steady
increases since fiscal year 2018-especially after years of flat
funding. We are also pleased that the subcommittee included language in
its fiscal year 2022 report expressing support 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 are enthusiastic about the new NLSY cohort
and urge the subcommittee to sustain its support for its development.
We urge the subcommittee to provide BLS with $814 million in fiscal
year 2023 and to adopt, once again, report language urging the agency
to maintain its plans for a new NLSY cohort.
institute of education sciences (ies)
The Institute of Education Sciences (IES) plays a critical role in
supporting research used in developing and examining the effectiveness
of education programs and curricula. The National Center for Education
Statistics (NCES), the statistical arm of IES, provides objective data,
statistics, and reports on the condition of education in the U.S.
Population scientists rely on NCES surveys to conduct research on an
array of topics, such as linkages between educational access/attainment
to health outcomes of specific populations, economic well-being, and
incarceration rates. PAA and APC were pleased that Congress enacted a
substantial, nearly 15 percent increase for IES in fiscal year 2022,
which, in addition to investments in other priorities, will allow the
agency to finally address longstanding staffing shortfalls. We were
disappointed that the President's Budget Request (PBR) would reverse
that investment by recommending an overall cut of 10 percent at IES.
Although the National Center for Education Statistics (NCES) was not
targeted for a cut per the PBR, we assume this is due to NCES not
receiving an increase in fiscal year 2022. Adoption of the PBR line
item for NCES would represent three consecutive years of flat funding;
the last increase, enacted in fiscal year 2021, was less than 1 percent
over fiscal year 2020. We therefore urge the committee to provide IES
with at least $815 million in fiscal year 2023, an amount recommended
by the Friends of IES, and to ensure that NCES receives an increase
over its fiscal year 2022 level, $291.5 million.
Thank you for considering our support for these agencies as the
subcommittee drafts the fiscal year 2023 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/
Association of Population Centers.]
______
Prepared Statement of PrEP4All
On behalf of PrEP4All, thank you for the opportunity to comment on
fiscal year (FY) 2023 appropriations for a National PrEP Program.
Founded in March 2018, PrEP4All is an organization of community
members, healthcare professionals, lawyers, and academics all dedicated
to increasing access to lifesaving HIV medications. Every member of
PrEP4All has been personally affected by the HIV epidemic, and most of
us rely on HIV treatment and pre-exposure prophylaxis (PrEP)
medications every day. As patients ourselves, we have all experienced
the shortcomings in the domestic HIV response first hand.
We are calling on Congress to allocate $400M for a National PrEP
Program to the Department of Health and Human Services (HHS) in its
FY23 budget, a necessary first step to implementing the ambitious
reforms to PrEP access proposed in President Biden's FY23 budget.
The nation will not meet the goals of its Ending the HIV Epidemic
initiative without a new approach to PrEP. In 2019, nearly 37,000
people in the U.S. were diagnosed with HIV. Black and Latinx/Hispanic
individuals comprised 42 percent and 29 percent of new diagnoses,
respectively. Despite the availability of PrEP--antiretroviral
medication that if taken regularly drastically reduces the risk of
acquiring HIV--since 2012, relatively few people in the U.S. are able
to access it. In 2020, only 25 percent of people who could benefit from
PrEP actually received it, with large and growing disparities by race,
ethnicity, gender, and geography. Sixty-six percent of White Americans
recommended for PrEP received a prescription in 2020, compared to only
16 percent of Latinx/Hispanic Americans and just nine percent of Black
Americans.
A National PrEP Program must move away from a patchwork approach to
access that requires uninsured individuals to navigate a set of
separate and confusing programs for PrEP medications, labs, and
necessary ancillary services. A National PrEP program must create
simple pathways to PrEP access for those who need it most and engage a
broader network of PrEP providers. Over 20 national HIV organizations
have signed onto a letter supporting a National PrEP Program and
calling for a program to be guided by the following core principles:
accessibility, equity, simplicity, affordability, sustainability, and
adaptability.
We urge Congress to recognize the urgency of addressing the
Nation's broken and inequitable PrEP financing and delivery system and
allocate $400M for this program in its FY23 budget.
Please reach out to me if I can be of any assistance; I can be
reached at 185 Hall Street #105, Brooklyn, NY 11205,
[email protected].
Sincerely.
[This statement was submitted by Jeremiah Johnson, PrEP Project
Manager, PrEP4All.
______
Prepared Statement of Prevent Blindness
Chairman Murray, Ranking Member Blunt, and Committee Members: I
appreciate the opportunity to submit testimony to the subcommittee on
behalf of Prevent Blindness--the Nation's leading nonprofit, voluntary
organization committed to preventing blindness and preserving sight for
Americans of all ages, racial and ethnic backgrounds, communities, and
socioeconomic circumstances. We stand ready to work with the
subcommittee and Members of Congress to advance policies that seek to
improve our Nation's vision and eye health.
Prevent Blindness respectfully requests the following allocations
in Fiscal Year (FY) 2023 to vision and eye health programs at the
Centers for Disease Control and Prevention (CDC), National Center for
Chronic Disease Prevention and Health Promotion:
--$5,000,000 for Vision and Eye Health to conduct necessary national-
level surveillance of vision impairment and eye disease, and
continue state and community partnerships that promote early
detection and access to eye care treatment; and
--$4,000,000 for Glaucoma, which will help to achieve a reduction in
the incidence of glaucoma in high-risk patient populations
through screening, referral, and treatment.
We are grateful to and applaud this Committee's recognition of the
importance of the CDC's Vision and Eye Health program with an
allocation of a much-needed increase in FY 2022. This new funding level
of $1.5 million will better inform interventions--particularly around
the social, economic, and environmental contexts as related to eye
health care disparities--and allow for stronger integration of vision
and eye health into current and ongoing community approaches around
aging, childhood development, mental health services, referral to care
and care coordination, and chronic disease prevention.
In order to improve upon existing State- and community-based data,
to fully capture what is happening at the National-level, and get ahead
of the most serious consequences of preventable vision loss, Prevent
Blindness respectfully calls on the Senate to build upon the
investments made in FY 2022 with a total allocation of $5 million to
the CDC's Vision and Eye Health program. This funding will serve two
purposes:
(1) It will allow the CDC to place ophthalmology examinations and
visual content on The National Health and Nutrition Examination
Survey (NHANES) and collect national-level examination-based
data that will identify those who are unaware of their risk for
vision loss or eye disease; thus, creating a much more accurate
and authentic illustration of prevalence, and
(2) Use this data to improve health equity through State and
community partnerships by determining the burden of vision loss
against demographic factors like racial or ethnic background,
age, socioeconomic circumstances, geography, or health status
and improving existing interventions to include these
approaches to preventing vision loss and blindness.
Currently, the CDC relies on a patchwork of best-available data
pieced together through claims, registries, and self-reported national-
level surveys. The 2005-2008 data set is the last collection of
reliable, national-level prevalence estimates of vision impairment and
eye diseases; meaning that our best available data on our National
vision loss and eye disease burden is nearly 15 years old with current
state and community interventions based on 10 to 14-year-old data. We
cannot respond to the needs of patients who may not know that they are
living with blinding eye disease, low vision, or vision loss using data
that predates such trends as our rapidly aging population, skyrocketing
rates of chronic disease, our National mental health crisis, new
stresses to our eye health such as prolonged and frequent use of
technology, and rising costs of health care. In the long term, not
having this critical information base will create gaps in our knowledge
of COVID-19 and other infectious diseases--the consequences of which
may include gaps in research at the National Institutes of Health.
Vision is a critical sensory enabler that allows us to live and
function in our daily lives. From early in life as a part of childhood
development and enabling readiness to learn in school, for adults who
seek a sense of well-being through economic independence, pursuit of
professional and personal interests, and recreational activities, and
for older Americans to age healthfully and independently with a high
quality of life and strong social connections, good vision enables all
aspects of a productive, satisfying, engaging, and healthy life. New
research published by CDC in 2022 estimates that the annual economic
burden of vision loss and blindness was $134.2 billion, including over
$40 billion in excess and potentially avoidable long-term care
expenses, and $16.2 billion resulting from reduced labor force
participation.\1\
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\1\ Rein DB, Wittenborn JS, Zhang P, et al. The Economic Burden of
Vision Loss and Blindness in the United States. Ophthalmology. Apr
2022;129(4):369-378. doi:10.1016/j.ophtha.2021.
09.010.
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Forthcoming research, using the federally funded American Community
Survey (ACS), the Behavioral Risk Factor Surveillance System (BRFSS),
and available data from NHANES, has found that vision loss is strongly
associated with social determinants of health and regional variation at
the community level. That research illustrates that presenting vision
loss is strongly associated with poor economic conditions, and could be
addressed nationwide with additional support. Those with incomes lower
incomes, educational attainment, food security were significantly more
likely to have evaluated presenting vision problems or to self-report
being blind or having serious difficulty seeing compared to those with
higher incomes and educational attainment and those with fewer issues
with food security. People living in rural areas were more likely to
experience vision problems than their urban counterparts, as were
unmarried persons (whether they were single, divorced, or widowed).
Using ACS data, the research found that approximately 20% of the
variation in self-reported vision problems was explained by community
level differences beyond those described by economic and demographic
variables in the ACS. Additional research is required to understand the
social determinants of vision health at the community level, and to
design public health programs that help all Americans maintain the
highest level of vision possible.
And yet, despite its significance, we tend to accept vision loss as
inevitable to aging, a consequence of chronic disease, family history,
personal risk, socioeconomic circumstances, or a result of under-
development in childhood or adolescence. Vision loss and eye disease
often come at significant cost to the patient and to our National
health care system as they contribute to or worsen many conditions like
diabetes, stroke, hypertension, cardiovascular problems, mental health
concerns like anxiety, depression, social isolation, cognitive decline,
and injury related to falls. Incidents of avoidable vision loss each
represent a missed opportunity when considered that timely diagnosis
and early treatment could prevent up to 98% \2\ of visual impairment
and blindness in the U.S.
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\2\ Centers for Disease Control and Prevention, 2018: https://
www.cdc.gov/media/releases/2018/a0726-vision-health.html.
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Unfortunately, vision loss and eye disease are often left on the
margins of important policy conversations around social determinants of
health, health equity, access to care including coverage and costs of
obtaining eye care, and improving health outcomes, which creates a
significant disadvantage in efforts to improve our National public
health and lower personal and national health expenditures. Vision loss
and eye disease are linked to numerous social determinants of health,
including: lower income levels, lower levels of attained education,
residence in low-quality housing or an unsafe neighborhood which limits
physical activity and increases psychological distress, and inability
to access care due to cost, lack of coverage, transportation issues,
and refusal of services by providers. Lack of provider availability is
a major complication in access to eye care as it is estimated that 721
of 3,006 (roughly 24%) American counties have no ophthalmologist or
optometrist,\3\ even as approximately one-fifth of the Nation's
population lives in rural America and only 10% of the country's
physicians currently practice in rural communities.\4\
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\3\ https://pubmed.ncbi.nlm.nih.gov/25602911/.
\4\ https://www.ruralhealthweb.org/.
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A May 2021 \5\ analysis from the CDC and the NORC at the University
of Chicago that summarizes these data sources, as well as data from the
last use of visual content on NHANES from 1999--2008, has found that
over 7 million in the U.S. are living with vision loss or blindness and
1.62 million people who live with vision loss or blindness are under
age 40. This same study determined that vision loss or blindness is 68%
higher than previous published estimates, with higher prevalence among
Black and Hispanic populations and women more than men. This data
analysis is based on best estimates of vision loss only, and its
authors conclude that examination-based information would create
stronger national-level and State-based data that can lend better to
more targeted efforts to prevent and treat vision loss and eye disease.
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\5\ https://jamanetwork.com/journals/jamaophthalmology/fullarticle/
2779910?guestAccessKey= fb84d04c-a5f4-4753-a5f8-
835f528ea50e&utm_source=For_The_Media&utm_medium=
referral&utm_campaign=ftm_links&utm_content=tfl&utm_term=051321.
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Our nation needs a strong, public health approach to vision and eye
health that includes surveillance, evidence-informed early detection
and interventions, public awareness and community-level education, and
measures to address and eliminate barriers in access to eye care. will
create a stronger understanding of how vision loss intersects with
other chronic health conditions, population demographics, and social
determinants of health. We urge the Committee to direct $5 million to
the CDC's Vision and Eye Health program to ensure we are doing
everything we can to protect Americans' vision and eye health.
glaucoma at the cdc
Glaucoma is known as the ``thief sneak of sight'' due to its
progressive nature that is often undetectable until changes to vision
are noticed by the patient-which is often when vision loss has become
irreversible and permanent. According to the National Eye Institute,\6\
women account for 61% of glaucoma cases in the U.S. with black
Americans over the age of 40 at highest risk for developing glaucoma.
In addition, according to the CDC,\7\ Hispanics and Latinos are the
largest and fastest-growing minority group in the United States, by
2050, half of people living with glaucoma will be Hispanic or Latino.
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\6\ https://www.nei.nih.gov/learn-about-eye-health/outreach-
campaigns-and-resources/eye-health-data-and-statistics/glaucoma-data-
and-statistics.
\7\ https://www.cdc.gov/visionhealth/resources/features/hispanic-
latino-vision-health.html#: :text
=High%20blood%20pressure%20can%20cause,will%20be%20Hispanic%20or%20Latin
o.
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Glaucoma is the second leading cause of blindness worldwide.
Treatment has been shown to reduce the progression of visual field loss
from glaucoma, but population-based studies suggest that even in
developed countries, half of the people with glaucoma do not know that
they have the disease. Because glaucoma is usually asymptomatic until
the very late stages, affected individuals may not have a reason to
seek eye care before the optic nerve is irreversibly damaged.
Unfortunately, people in whom glaucoma is diagnosed late in the disease
process are at greatest risk for going blind.
There are two main pathways for high-risk minority populations to
result in blindness due to glaucoma. The first is through low community
resources, which leads to a lack of program funding, lack of
transportation systems, and low paying jobs that do not provide
adequate health benefits. Lack of program funding and lack of
transportation converge directly on a lack of primary health care
clinic locations, whereas low paying jobs includes the mediators of
lack of education and lack of adequate healthcare coverage, to lack of
available eye care providers that can provide treatment in a timely
manner. A lack of access to health care providers leads directly to
lower rates of routine screening for glaucoma. These lower screening
rates cause delayed detection of glaucoma. A lack of eye care providers
also leads to delayed treatment, even in the absence of lower screening
rates. Delayed treatment for glaucoma causes higher rates of permanent
vision impairment or blindness both directly and through a lack of
treatment options. A lack of treatment options is also affected by a
lack of healthcare, making it a major compounding factor.
The second pathway for high-risk minority populations is a lack of
education. A lack of education refers specifically to a lack of proper
information of glaucoma risk and maintaining proper vision health. A
lack of overall education likely compounds the effects of each link of
the pathway. A lack of subject specific education leads to lower rates
of routine glaucoma screening, delayed detection of disease during a
treatable stage, and increased social isolation due to vision
impairment. Social isolation is a compounding factor in reduced
capacity to maintain one's health, be a productive member of society,
and engage in appropriate physical activity.
The pathways between high-risk minority populations and higher
rates of vision loss due to glaucoma are complex, and there are many
opportunities for intervention. The most promising intervention comes
from a change in the location where glaucoma screening is performed.
Until recently, the most reliable way to detect and initiate treatment
of glaucoma was through a comprehensive eye examination performed by
and optometrist or an ophthalmologist--something which data
demonstrates is not done in this high-risk population. The advent of
teleretinal eye screenings in a primary health care and community
settings provide an increased opportunity to identify glaucoma in high-
risk populations and properly refer individuals for treatment of this
eye disease.
Several research studies funded by the CDC since 2014 have
initiated and refined the protocols for the addition of teleretinal
vision screening services in primary health care and community settings
of minority and underserved populations. As such, we ask the Committee
to maintain the CDC's glaucoma program at $4 million in FY 2023, which
will improve glaucoma screening, referral, and treatment particularly
for populations that face disparity in access to glaucoma care through
innovative, community-based approaches and models of care that connect
glaucoma patients to sight-saving glaucoma care.
Thank you.
[This statement was submitted by David B. Rein, PhD, MPA, NORC, at
the
University of Chicago.]
______
Prepared Statement of ProvenTutoring
As providers of scalable research-proven tutoring models designed
to rapidly recover from the negative impact of COVID on student
learning, we propose the following legislative language to encourage
application of funds to needed approaches:
Proposed Language
High-Quality Tutoring.--The Committee notes that to address
significant learning loss due to disruptions caused by Covid-19,
particularly among historically disadvantaged students, many LEAs have
dedicated Title I and other Federal resources to support academic
tutoring. It is estimated that more than $3.6 billion in Federal relief
funds could be spent on tutoring between 2022 and 2024. Research shows
that using high-quality tutoring programs with evidence of
effectiveness as defined in the 2015 ESSA law can have a significant
impact on addressing learning loss. These integrated systems include
three to five half-hour (or longer) sessions a week, delivered by a
human tutor to a group of 1 to not more than 4 students at a time, and
use a well-structured process, high-quality materials designed for
tutoring during the school day, ongoing professional development and
coaching for tutors, and assessment tools to benchmark student
achievement. Proven tutoring models can close the gap and bring
struggling students up to the level of their peers. The Committee
encourages the Department to promote and provide technical assistance
to LEAs to ensure the implementation of tutoring models that have
evidence of effectiveness.
background
Introduction
The educational crisis created by the pandemic and the
unprecedented Federal funding to address it have generated widespread
attention toward the most effective tool to accelerate learning:
research-proven tutoring models. Now is the time to ensure districts
are making solid investments of Federal dollars by encouraging the
adoption of tutoring programs that have evidence of increasing student
achievement. This outside witness testimony outlines the crucial
features of high quality tutoring models and proposes language for the
Committee to consider including in the FY 2023 budget to encourage the
adoption of such tutoring models.
Research shows that high-quality tutoring programs that have been
evaluated and proven to improve student achievement can have a strong
impact on learning loss when they are delivered by a human tutor during
the school day. Therefore, funding that is available for tutoring
should be invested in these models to ensure that tutoring is advancing
an equitable learning recovery.
Road-Tested Tutoring Models
There is a critical need at the State and local levels for guidance
around the characteristics and value of high-quality tutoring models.
Dozens of State and district tutoring programs launched this year, but
many lack crucial features: a replicable tutoring system, delivered by
a human tutor during the school day, that has evidence of improved
student achievement compared to a control group.
A replicable tutoring system is essentially a road-tested model
that possesses several interdependent, essential components:
--Structured instructional process
--High dosage format (3-5 times a week)
--Professional development and ongoing coaching for tutors
--High-quality materials designed for tutoring
--A system of assessment and data collection tools for measuring
student achievement
Each component supports the other to ensure optimal impact on
achievement. The professional development and coaching are specific to
the program's procedures and materials. A system of regularly-scheduled
assessments and data collection ensures that students are working at
the appropriate levels and helps to move them through a program
efficiently. The high dosage format ensures the program is delivered
consistently, providing students with ongoing support.
Road-tested models are distinct from other tutoring initiatives
because they have been shown to make meaningful gains in student
achievement in studies that meet the evidence standards of the Every
Student Succeeds Act (ESSA). Tutoring during the school-day with
proven, integrated models can double the rate of growth in reading
skills for struggling readers--students tutored for half a year can
grow a full year more in reading skills than similar students not
receiving tutoring. Similar growth is possible in secondary math. With
evidence of effectiveness, these models provide the greatest promise of
impact.
A Human Tutor
Human tutors are a crucial component of effective tutoring
programs. An invested, trained, and qualified tutor can develop a human
connection with a student in the way that a technology platform never
can, can answer questions on the spot, and can adapt instruction to
address student needs. The human connection can provide students with
emotional support and bring joy to the process. Successful tutors can
be paraprofessionals employed by the school or external staff. When
they are highly trained and guided by an evidence-based program, tutors
support the classroom teacher in their efforts to accelerate learning
for struggling students. Online tutoring platforms are tempting for
many districts because they are affordable and easy to adopt, but a
large number of students who need the intervention do not engage with
these platforms. Human tutors provide structure, consistency, and the
in-person connection that students lost during the pandemic. Of course,
human tutors can serve in-person, or can connect remotely to students
in the schools on platforms designed to recreate in-person
relationship-based tutorials.
School Day Tutoring
In order for tutoring to be delivered consistently and reach the
students who need it the most, it must be conducted during the school
day. Out-of-school time tutoring contends with issues of attendance and
students having to ``opt-in'' to the intervention. Embedding tutoring
during the school day guarantees access to the students who need it,
particularly those students who have been disproportionately impacted
by the pandemic.
Signatories:
Nancy Madden, Founder of ProvenTutoring, Professor, School of
Education, Johns Hopkins University
Alan Safran, CEO and co-founder, Saga Education
Dr. Claire Hagen Alvarado, Director, Literacy First at UT Austin
Kate Bauer Jones, Executive Director, Future Forward Literacy
Julie Wible, Executive Director, Success for All Foundation
______
Prepared Statement of the Pulmonary Hypertension Association
pha's fiscal year 2023 l-hhs appropriations recommendations
_______________________________________________________________________
--At least $49 billion in program level funding for the National
Institutes of Health (NIH).
--Proportional funding increases for NIH's National Heart, Lung,
and Blood Institute (NHLBI); the National Institute of
Child Health and Human Development (NICHD), and the
National Center for Advancing Translational Sciences
(NCATS).
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt 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 FY2023 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, health care 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 FY 2023.
national institutes of health
Please provide NIH with meaningful increases--including at least
$49 billion in program funding in FY 2023--to facilitate expansion of
the PH research portfolio and continued improvement in 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 nearly 1,200 participants with various
types of PH, subjects at risk for PH, and healthy controls, PVDOMICS
hopes to find new similarities and differences between the current WHO
classifications of PH. 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.
Data from the original cohort is currently being prepared for
publication and the rich resources of PVDOMICS have spurred many
presentations at national and international meetings. With its novel
approach to enrollment and data analysis, PVDOMICS is poised to change
our thinking about pulmonary hypertension and its classification in the
upcoming years.
proper health coverage and acces
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 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
Chandani's 3-year-old son was diagnosed with severe PH in July 2020
at the age of two. Chandani is a physician herself and so she
understands all too well the seriousness of her son's prognosis. Since
his diagnosis last year, her son's medical care team has tried
progressively increasing therapies in a stepwise fashion, which is
often required by insurance companies but is known to lead to worse
outcomes than when patients are allowed to immediately begin the
treatment prescribed by their doctor.
Currently, Chandani's toddler is receiving three oral drugs in
addition to a subcutaneous infusion, all for PH. As of the end of
April, he has not been responsive to these therapies which
unfortunately indicates a poor prognosis. Currently, without a
transplant, her son has a 60 percent chance of survival over the next 5
years, and if he were to receive a double-lung transplant, it would
statistically add 2.7 years to his life. Studies show that self-
reported quality of life for patients with pulmonary hypertension ranks
worse than cancer patients. Research and treatment are vitally needed
for this disease that has such a fatal prognosis and a poor quality of
life.
Denise has a health insurance plan with a $3,000 deductible. She
uses a manufacturer copay card to pay for the first of her life-
sustaining pulmonary hypertension (PH) medications. However, Denise's
health insurance plan will not apply the copay card to her deductible,
so when Denise fills the prescription for her second medication, she is
responsible for her entire deductible out-of-pocket. When Denise was
renewing her health insurance coverage for the year, this information
was hidden from her. She was told about other changes to the plan, but
the shift to a copay accumulator was never mentioned, nor could Denise
find the relevant information online.
Barbara has lived with PH for 21 years and with the treatment of
liquid oxygen, she has managed to develop a comparatively active life
filled with volunteer work and visits with her children and
grandchildren. However, that changed in April 2021 when Barb's
Medicare-contracted oxygen supplier stopped delivering liquid oxygen
without notice. Instead, they began providing compressed oxygen gas
tanks.
Liquid oxygen tanks are light enough to be carried hands-free
strapped to the back and hold a sufficient volume of oxygen to provide
a continuous stream for 6-8 hours at a time so that Barb is able to
breathe easily while still walking around. By contrast, compressed
oxygen tanks are heavier and hold a smaller volume of oxygen, so they
sustain her for only a fraction of the time that liquid oxygen tanks
do. To carry a compressed oxygen tank with her, she must wheel it
behind her or struggle with the weight and bulk of the tank if
attempting to carry them on her back and change them out every couple
of hours.
These new limitations to her lifestyle due to the loss of
appropriate treatment for her PH have caused a steep decline in her
mood and quality of life and she has quickly become depressed; at a
recent visit with her physician, she was told ``I've never seen you
this bad.'' The mobility and ease that using a liquid oxygen tank
provides Barb is the difference between struggling to complete one
errand in a day, versus running multiple errands, feeling capable of
going out to have lunch with friends, or being able to comfortably
visit her seven grandchildren.
In the past weeks, Barb has spent precious energy calling 30
suppliers within a 100-mile radius of her home searching unsuccessfully
for anyone else to provide her with the correct treatment for her PH
condition. In her efforts to find out more about the loss of access to
liquid oxygen, Barb has heard from many other PH patients from across
the country who are experiencing the same situation. This restriction
of access to liquid oxygen represents a collective loss in quality of
life for the community of PH patients that could have long-lasting and
far-reaching consequences for an already serious, degenerative disease.
Thank you again for your consideration of the PH community's
priorities as you develop the FY 2023 L-HHS Appropriations bill.
______
Prepared Statement of Rebuilding America's Middle Class
On behalf of (RAMC), a coalition of State and individual community
college systems from across the Nation--representing over 120 colleges
and 1.5 million students, I appreciate the opportunity to provide
written comments on the funding in the fiscal year 2023 Labor, Health
and Human Services, Education and Related Agencies (LHHS)
appropriations bill that is essential to community colleges and the
students that we serve.
Community colleges have an unparalleled commitment to
accessibility, which encourages traditionally underrepresented
audiences to pursue a college degree. We serve 45 percent of all first-
time freshmen, and 40 percent of our students are the first in their
family to attend college. Forty two percent of all African American
undergraduates, nearly half of all Hispanic undergraduates, and 56
percent of Native American undergraduates attend community colleges.
Community colleges are open access, seek to make higher education
accessible and affordable for everyone, and matches employers' need for
a larger, more diverse workforce. Preparing more Americans to enter the
workforce with the skills necessary to compete for in-demand jobs,
especially during difficult economic times, is a top priority for all
RAMC members. With this in mind, we make the following recommendations
to improve Federal financial aid policies to support community college
students, particularly those from nontraditional background who
continue to rely on our schools for access to higher education:
Increase the Maximum Pell Grant.
RAMC members believe that the Pell Grant program is the key to
ensuring low-income students can afford college. Community colleges are
the most affordable of the many options facing students; yet, even at
our institutions, low-income community college students overwhelmingly
rely on this critical Federal student aid program. Even with our low
tuition institutions, Pell grants allow such students to afford books
and supplies and help with housing, childcare, food and other basic
needs. For these reasons we urge the subcommittee to adopt the
discretionary portion of the Administration's call for a $1,775
increase in the maximum Pell grant as part of the President's fiscal
year 2023 budget request.
We also strongly support the expansion of Pell to cover short-term
certificates that open pathways to high paying employment options.
While we are working closely with the House and Senate Conference
Committee on the United States Innovation and Competition Act to
maintain House language on this matter, we welcome the opportunity to
work with that conference Committee or the House and Senate
appropriations committee to achieve this important policy goal. The
expansion of Pell to allow short-term credentials will provide an
immediate boost to a significant number of our students focused on
obtaining the workforce skills they need to earn middle class incomes.
Increase Career Technical Education State Grants.
The Administration's fiscal year 2023 request proposes to decrease
CTE State Grants by $25 million compared to the fiscal year 2022 level.
RAMC believes that career and technical education certificates and
degrees provide essential value to those that earn them. Accordingly,
RAMC believes that Congress should again provide an increase in funding
to the CTE grant program as part of the fiscal year 2023 appropriations
process.
Support the Title III Strengthening Institutions Program.
The fiscal year 2023 budget request includes an increase of $98.9
million for the Strengthening Institutions Program (SIP). RAMC
institutions utilize SIP funds to increase student retention, provide
enhanced faculty professional development and expand access to high-
demand STEM programs through the conversion of high-demand courses. We
strongly support the Administration's request for an increase and urge
the subcommittee to include it in the fiscal year 2023 LHHS
appropriations bill.
Expand Strengthening Community Colleges Program.
The Strengthening Community College Training Grant program provides
vital capacity building resources at community colleges to build
training programs that partner with industry. Community colleges are
always at the forefront of developing and supporting education and
training opportunities that enable individuals to acquire the skills
they need to obtain jobs for which businesses are hiring. The
Administration's budget calls for a $55 million increase for this
initiative. RAMC supports this increase and urges the subcommittee to
include it in the fiscal year 2023 LHHS appropriation bill.
Support Apprenticeships and Innovative Partnerships.
As community college leaders, RAMC members are at the forefront of
working to expand apprenticeships and create opportunities for students
to earn while they learn. As such, we applaud the fiscal year 2023
proposal that includes $303 million for the Apprenticeship Program, an
increase of $68 million above the fiscal year 2022 funding level. We
support the President's proposal and would urge the subcommittee to
consider the $68 million increase for this program in the fiscal
Year2023 appropriations process.
Thank you for your consideration of our comments. RAMC members
stand ready and willing to help you in any way we can as the fiscal
year 2023 Appropriations process moves forward.
[This statement was submitted by Dr. Monty Sullivan, President,
Rebuilding America's Middle Class: A Coalition of Community Colleges.]
______
Prepared Statement of Refugee Council USA
Chairwoman Murray, Ranking Member Blunt, and members of the
subcommittee, thank you for this opportunity to submit these funding
and oversight recommendations for Fiscal Year (FY) 2023 on behalf of
the 29-member organizations of Refugee Council USA (RCUSA) 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 FY 2023 funding levels of $9,991,000,000 for the Department
of Health and Human Services' (HHS) Refugee and Entrant Assistance
(REA) account.
The REA account funds the Office of Refugee Resettlement (ORR)
within HHS' Administration of Children and Families (ACF). 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 provides essential services to refugees
who have arrived in recent years, asylees, Cuban and Haitian Entrants,
Iraqi and Afghan recipients of Special Immigrant Visas (SIVs),
trafficking and torture survivors living in the United States, certain
Amer-Asians, Afghan humanitarian parolees who arrived under Operation
Allies Welcome, and unaccompanied refugee and immigrant children.
RCUSA recommends an increase for the Transitional Medical
Assistance (TAMS) program to $2,530,000,000 to fund 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 also
recommends increases for Refugee Support Services (RSS) programs to
$1,400,000,000; for domestic and foreign-born trafficking survivor
services to $50,000,000; for torture survivor assistance to
$28,000,000; and for unaccompanied children to $5,100,000,000. We also
recommend the creation of an emergency contingency fund for needs
across ORR-eligible populations appropriated at $100,000,000.
In addition, we recommend new funding for family reunification for
separated asylum-seeking families ($533,00,000) and legal
representation needs for Afghans evacuated to the U.S. under Operation
Allies Welcome ($250,000,000).
Robust Appropriations to Support the Rapid Rebuild and Expansion of the
Resettlement Network
Throughout the previous administration, the U.S. Refugee Admissions
Program (USRAP) was steadily dismantled: refugee admissions decreased
by 80 percent and one-third of all resettlement offices in the U.S.
closed. From the outset, the Biden administration committed to
rebuilding a robust and innovative USRAP and set an ambitious refugee
admissions goal of 125,000 for FY 2022. There were soon new and urgent
demands on resettlement service providers: following the U.S. military
withdrawal from Afghanistan, over 75,000 U.S.-affiliated and at-risk
Afghans have been welcomed into the United States under Operation
Allies Welcome. The domestic network of resettlement agencies was
quickly mobilized to receive and support the integration of this newly
arrived Afghan population. There are currently 271 resettlement offices
providing Reception & Placement (R&P) services to refugees--an over 35
percent increase from 199 offices at the beginning of 2021.
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 the
provision of a core set of services during someone's first months in
the U.S., 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 resettlement providers around the country.
Once refugees arrive in the U.S., they are supported in orienting
to their new community, learning English, enrolling their children in
school, and finding 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 needs within the REA account but does not include all program
activities:
Legal Services for Afghans Arriving Under Operation Allies Welcome
The needs of newly arrived Afghan evacuees are distinct from other
groups served by ORR. Unlike immigrant visas or the refugee program,
humanitarian parole is not a pathway to permanent status; it is a
temporary allowance to enter and remain in the United States. As such,
Afghans who have been or will enter the U.S. with humanitarian parole
under Operation Allies Welcome find themselves under a cloud of legal
uncertainty and must seek an existing immigration pathway in order to
remain in lawful status once their parole expires. In all likelihood,
many will need to pursue asylum. This is a complex legal process for
any immigrant to navigate, let alone for the many Afghans who arrived
with little more than the clothes on their backs. It is essential that
these Afghan neighbors have access to reliable legal counsel to assist
them in their immigration process.
While resettlement agencies across the country are practiced at
assisting refugees in adjusting their immigration status, requiring
their existing legal service providers to assist with hundreds of
asylum applications--simultaneously--will overburden available
resources. Resettlement agencies do not have enough Department of
Justice accredited representatives and on-staff immigration attorneys
to meet this need. Indeed, even with legislation to provide a pathway
to lawful permanent residency, such as an Afghan Adjustment Act, the
reliance on these providers will be substantial.
As such, RCUSA is recommending $250,000,000 for legal
representation needs for Afghans evacuated to the U.S. under Operation
Allies Welcome.
Trauma-Informed Care for Unaccompanied Children
Unaccompanied children (UC) are immigrant children who arrive in
the U.S. without legal guardians and who require special protections.
Care for unaccompanied children is mandated by the Trafficking Victims
Protection Reauthorization Act (TVPRA) and governed by the TVPRA, the
Homeland Security Act of 2002, and the Flores Settlement Agreement. ORR
is the legal caretaker of unaccompanied children until they can be
reunited with family. ORR funds a network of shelters where UC stay
while reunification happens and ORR's primary goal is the safe and
secure placement of each child with a sponsoring family.
In FY 2021, 121,000 unaccompanied children arrived in the United
States, an all-time high. RCUSA's recommendation of $5,100,000,000 will
provide for an increased number of beds in licensed facilities. The
increased arrivals over FY 2021 led to the use of both influx
facilities and Emergency Intake Sites due to lack of online licensed
bedspace. While the pandemic took many beds offline, ORR still needs to
increase licensed placements. This funding will allow the necessary
network growth in small-scale shelters, which are much better suited to
meeting the needs of UC.
This critical funding will also provide universal access to post-
release services (PRS) for both children and their sponsors. Post-
release services are bridging services that assist children and
sponsors adjust to their new lives together after reuniting. We know
that trauma responses from migration or home-country experiences often
manifest after the initial ``honeymoon'' period ends, and access to
social workers and community services is critical in these cases.
Historically, around 25 percent of UC have received PRS; ORR intends to
provide these services to 85 percent of UC in FY22 and 100 percent of
UC by FY23.
RCUSA does not support an expansion of detention, including through
large-scale institutional facilities, or efforts to support forced
family separation.
______
Prepared Statement of Research!America
On behalf of Research!America's alliance, which advocates for
science, discovery, and innovation to achieve better health for all,
thank you for this opportunity to share our views on Fiscal Year 2023
(FY23) appropriations under the jurisdiction of the subcommittee on
Labor, Health and Human Services, Education, and Related Agencies.
And, to all members of the subcommittee, thank you for all your
work to include strong FY22 funding levels for critically important
Federal health research agencies, including the National Institutes of
Health (NIH), the Centers for Disease Control and Prevention (CDC), and
the Agency for Healthcare Research and Quality (AHRQ); and for
including funding to get ARPA-H off the ground. We were also so pleased
that the subcommittee was able to include language naming the Roy Blunt
Center for Alzheimer's Disease and Related Dementias Research Building
in the FY22 Omnibus Appropriations Act.
the national institutes of health
We are particularly concerned about funding for the National
Institutes of Health. While there were many positive provisions in the
President's FY23 budget proposal, Research!America was deeply
disappointed by the shockingly low (0.6% percent) funding increase
included for the NIH. We recommend that the subcommittee allocate at
least $49.1 billion, an increase of $4.1 billion over FY22, for our
Nation's flagship research institution. This funding level, inclusive
of 21st Century Cures funding, would empower NIH to grow the number of
progress-fueling grants the Institutes can support. The American people
need and value fast-paced medical progress, which cannot be
accomplished without funding barrier-breaking, foundational research.
The NIH is the world's leading funder of basic biomedical research,
and Americans recognize the value of this research. Since 1992,
Research!America has commissioned national and State-level surveys to
assess public sentiment on issues related to research and innovation.
According to a January 2022 national survey commissioned by
Research!America, 85% of Americans believe it is important for Congress
and the President to prioritize achieving faster medical progress.
Americans want medical progress, and they want the U.S. to drive it.
NIH awards more than 80% of its funding in the form of 50,000
competitive grants to more than 300,000 researchers at over 2,500
universities, medical schools, and other research institutions in every
State and around the world. Research supported by NIH is directed at
the early, non-commercial stages of the research pipeline, which
complements later-stage research funded primarily by the private
sector. NIH-funded research fuels the entry of new drugs into the
market, providing an estimated return to public investment of $1.43 for
every dollar invested. Among its many success stories, the NIH
supported research which helped create the first kinases-targeted
category of cancer treatment drugs, launching a new wave of drug
development targeting similar molecules to treat cancer and other
diseases. In the case of the COVID-19 pandemic, the NIH had already
invested in research to develop vaccine platforms, which enabled it to
jumpstart development of powerful COVID-19 vaccines and treatments once
the pandemic hit.
NIH advances our Nation's interests in other important ways. For
example, the All of Us Research Program at NIH is advancing the largest
clinical trial in our Nation's history to accelerate precision medicine
and advance a host of other medical and health research objectives. NIH
has also prioritized diversity, equity, inclusion, and accessibility
through its implementation of its NIH Cross-agency DEIA Strategic Plan.
Its Human Genome Project has produced $1 trillion of economic growth-a
178-fold return on investment. The Helping to End Addiction Long-term,
or HEAL, Initiative is conducting interdisciplinary research to end the
opioid epidemic. The National Institute of Aging supports research on
the health and well-being of older Americans and, through its
Alzheimer's Disease Education and Referral Center, provides information
on age-related cognitive changes and neurodegenerative disease. The
Accelerating Medicines Partnerships combines contributions from both
private and public sectors to streamline collaboration between the NIH,
FDA, life science companies, and non-profit organizations working to
develop treatments for Alzheimer's, Type 2 diabetes, rheumatoid
arthritis, lupus, and Parkinson's disease. The NIH also invests in
educating and training America's future scientists and medical
innovators by sponsoring training grants and fellowships for
biomedical- and health-focused graduate and medical students,
postdoctoral researchers, and young investigators.
the advanced research projects agency for health
Research!America is grateful to members on both sides of the aisle
for providing $1 billion in FY22 to stand up this new agency. We
support the goal of developing ARPA-H into an entity that supports high
risk, high reward public-private R&D, and we support an FY23 funding
allocation of $5 billion for ARPA-H that complements but does not
supplant funding for the NIH.
By funding transformative high-risk, high-reward research, ARPA-H
has the potential to drive biomedical and health breakthroughs-ranging
from molecular to societal-to revolutionize treatments for all
patients. This health innovation incubator, modeled after DARPA and
ARPA-E, will empower the public and private sector to pursue
transformative, cross-disease R&D advances. We believe ARPA-H can bring
about progress that saves millions of lives around the globe while
significantly strengthening U.S. competitiveness in the global economic
arena.
the centers for disease control and prevention
The threats posed by COVID-19, Ebola, Zika, dengue fever,
influenza, the opioid epidemic, measles outbreaks, and other emerging
health threats have demonstrated the critical role the CDC plays in
protecting Americans. They have also revealed the enormity of
challenges the agency faces as it works to safeguard American lives. To
protect our Nation, CDC scientists must be on the ground fighting
public health challenges wherever and whenever they occur. We recommend
an allocation of at least $11 billion for the CDC in FY23, an increase
of $2.6 billion over FY22, to carry out its crucially important
responsibilities.
The CDC is tasked with protecting and advancing Americans' health.
Over the past 70 years it has worked diligently to thwart deadly
outbreaks, costly pandemics, and debilitating disease. The CDC also
plays a key role in research that leads to life-saving vaccines,
bolsters our Nation's response to the opioid crisis, and improves
health tracking and data analytics.
The CDC's work has benefited Americans in a myriad of ways. For
example, the CDC has successfully eliminated the endemic spread of
rubella within the United States; played a lead role in addressing the
growing threat of antibiotic resistance; dramatically reduced the
incidence of child lead poisoning; addressed disparities in health and
health care; tracked and contained dangerous pandemics and epidemics;
reduced deaths from motor vehicle accidents; and expanded newborn
hearing and other screening tests,
the agency for healthcare research and quality
AHRQ is the lead Federal agency responsible for ensuring medical
progress translates into better patient care. This investment improves
the care received by patients and saves taxpayer dollars. We recommend
the subcommittee allocate $500 million for the AHRQ in FY23, a 30%
increase over FY22.
AHRQ has a proven track record in using evidence-based approaches
to improve health care delivery. Using AHRQ's research and how-to
tools, the U.S. health care system prevented 1.3 million errors, saved
50,000 lives, and avoided $12 billion in wasteful spending from 2010 to
2013. For example, AHRQ-funded research has contributed to infection
control strategies in long-term care facilities by identifying
methicillin-resistant Staphylococcus aureus (MRSA) in these facilities.
AHRQ-funded research has played a pivotal role in reducing hospital-
acquired infections by nearly 1 million from 2014-2017. It has made
important contributions to patient-centered outcomes research (PCOR) by
investing in PCOR method training grants, including PCOR application in
opioid use disorder, and by promoting the implementation of PCOR in
clinical decision making.
We appreciate your consideration of our funding requests and thank
you for your stewardship over these critically important Federal
spending priorities. Please call on us if we can be of any assistance.
Contact: Sheila Murphy, Senior Policy and Advocacy Officer,
Research!America, [email protected].
Sincerely.
[This statement was submitted by Mary Woolley, President and CEO,
Research!America.]
______
Prepared Statement of the Restless Legs Syndrome Foundation
Chairwoman Murray, Ranking Member Blunt, and distinguished members
of the subcommittee, as you work to develop the fiscal year (FY) 2023
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
nearly $2 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 standard 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 medication; a class of medication used when all other
drug classes have failed due to augmentation, inadequate efficacy, or
adverse side-effects. Research and clinical experience indicate 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.
fy 2022 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 FY 2023 to bring NIH's budget up to $49
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.
Please provide $5 million for the National Neurological Conditions
Surveillance System (NNCSS) for FY 2022. The NNCSS at the Centers for
Chronic Disease Control and Prevention (CDC) collects and synthesizes
data to help increase our understanding of neurological disorders and
to support further neurologic research. RLS remains a severely
misunderstood and underdiagnosed neurological disorder, and increased
surveillance is vital to improving patient outcomes.
Please provide at least $6,000,000 for the Chronic Diseases
Education and Awareness Program at the Centers for Disease Control and
Prevention (CDC). With the cessation of the National Healthy Sleep
Awareness Project (NHSAP), CDC presently has no active public health
activities dedicated to sleep or sleep disorders, even though sleep
affects nearly every body system and many chronic diseases. Please
allow the valuable scientific and public health efforts started during
the NHSAP to continue.
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 opioid therapy 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 Stephen Smith from
Colorado, a RLS Foundation Discussion Board Moderator. Like all those
with RLS, night can bring a feeling of dread. Is this going to be one
of those nights when my RLS acts up and I don't get any sleep, or will
it just be one of those standard nights when my sleep is just poor?
About a year ago, I had one of those nights when my RLS acted up
and I knew that I wasn't going to get any sleep at all. So, I called my
doctor's night service and was instructed to go to the local hospital's
Emergency Room and to tell them to call my doctor.
Contrary to hospital policy, the ER doctor decided not to call and
also didn't understand RLS or my insomnia complaints. But he jumped on
my depressed feelings from insufficient sleep combined with my RLS
pacing, which he assumed was agitation, and the opioid that I take for
RLS. He then incorrectly concluded I had a drug problem and was
suicidal in spite of being told that I was not. So, he placed me under
a 72 hour psychiatric hold and sent me to a psychiatric hospital 3
hours away. I was shipped 180 miles confined to the back seat of a car
with raging RLS. The psych hospital didn't carry one of my RLS meds,
Tramadol, and forced me to go into withdrawal rather than go to the
effort to replace it. The abrupt withdrawal from Tramadol led to hours
of shakes and sweats followed by even more hours of RLS-like pacing for
the second night in a row. Since Tramadol also acts as an SNRI anti-
depressant, the abrupt withdrawal caused me to develop SNRI Withdrawal
Syndrome. This caused migraine headaches, severe anxiety and
depression, nightmares and dreams centered on the horrible experience
of being involuntarily confined to the psych hospital due to a
neurological disorder. These symptoms went on for months and required
drug treatment for anxiety and psychotherapy for the severe depression.
So, now nightfall brings a feeling of trepidation. Is this going to be
another night when my RLS acts up or I cannot fall asleep? If I do
manage to sleep, will I once again dream of the nightmare of being
confined to the psych hospital all due to failure of a number of
doctors to understand RLS or to even listen to their patient who is
trying to educate them?
Thank you again for the opportunity to share the views of the RLS
community.
[This statement was submitted by Karla M. Dzienkowski, RN, BSN,
Executive
Director, Restless Legs Syndrome Foundation.]
______
Prepared Statement of the Rotary Foundation
Chairwoman Murray, Ranking Member Blunt, and members of the
subcommittee: Rotary appreciates the opportunity to encourage
continuation of funding for FY 2023 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),\1\ 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
$276 million for the polio eradication activities of the CDC to
capitalize on the historic opportunity of unprecedented low levels of
endemic polio virus transmission which is simultaneously threatened by
the diversion of critical resources toward the COVID-19 pandemic. These
funds will support the GPEI's immediate priority of stopping all form
of polio virus transmission through procurement of vaccines, including
the recently introduced novel oral polio vaccine, a new tool that is
being rolled out to accelerate control of circulating vaccine derived
polio. These funds will also provide vital support for surveillance
activities which provide confidence in both the presence and absence of
polio virus transmission.
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\1\ The Global Polio Eradication Initiative (GPEI) is a partnership
led by Rotary International, the Centers for Disease Control and
Prevention (CDC), the World Health Organization (WHO), the United
Nations Children's Fund (UNICEF), the Bill and Melinda Gates
Foundation, and Gavi, the Vaccine Alliance.
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The 300,000 members of Rotary clubs in the U.S. appreciate the
United States' generous support and longstanding leadership toward a
polio free world. Rotary, including matching funds from the Gates
Foundation, has contributed more than $2.4 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
U.S. leadership will help achieve a polio free world and ensure the
continued global health contribution of polio eradication
infrastructure and resources.
unprecedented progress presents the best opportunity we have ever had
to achieve eradication
Since the launch of the GPEI in 1988, eradication efforts have led
to more than a 99.9 percent decrease in cases. Thanks to this
committee's support, 20 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.
In 2021, for the first time in history, there were no cases of wild
polio virus in the entire world for more than 7 months. In addition,
Pakistan didn't record a new case of wild polio virus for over a year.
Wild poliovirus polio incidence hit an all-time low in 2021 with only
five cases recorded in the two remaining endemic countries of Pakistan
and Afghanistan- a 96 percent reduction from 2020.
Outbreaks of circulating vaccine derived polio virus (CVDPV) which
affected more than 20 countries in 2020 are being brought under control
with fewer cases in fewer places in 2021 as compared to 2020 (638 cases
in 22 countries for 2021 vs 1087 cases in 26 countries in 2020). The
novel oral polio vaccine type 2 (nOPV2) is also being introduced to
accelerate progress in bringing these outbreaks under control.
Despite this progress, the GPEI and countries it supports face
significant challenges. In February 2022, a 3-year-old girl from Malawi
was confirmed as having contracted the first case of wild polio in
Africa since 2016. The virus that infected the child in Malawi was of
Pakistani origin underscoring the fact that as long as polio exists
anywhere, it is a threat everywhere. Fortunately, the case in Malawi
does not change Africa's status as a region certified free from wild
poliovirus because the virus originated in Pakistan and is considered
to be an imported case as opposed to locally circulating/endemic virus.
In April 2022, Pakistan reported its first cases of wild poliovirus
(WPV1) in nearly 15 months. The ongoing COVID-19 pandemic continues to
hamper the efforts of countries to sustain high levels of population
immunity which poses increased risk for outbreaks at a time of
unprecedented constraints on human and financial resources on the
ground and from the global community. Conflict and instability also
jeopardize progress, hampering efforts to organize and conduct polio
eradication activities. These challenges threaten thirty years of
progress and the cumulative U.S. investment of U.S. $4.2 billion which
has brought us to the threshold of a polio free world.
This combination of progress in the midst of ongoing challenges
underscores the urgency of continued focus to protect the vulnerable
gains made toward polio eradication as the COVID-19 pandemic continues
to disrupt polio immunization and eradication activities; and 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 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 to CDC has supported
the following essential polio eradication activities:
Leadership on surveillance and disease detection: CDC's Atlanta
laboratories serve as a global reference center and training facility,
providing expertise in virology, diagnostics, and laboratory
procedures, including quality assurance, and genomic sequencing of
samples obtained worldwide, and training virologists from around the
world in advanced poliovirus research and public health laboratory
support. CDC also provides the largest volume of operational
(poliovirus isolation) and technologically sophisticated (genetic
sequencing of polio viruses) lab support to the 145 laboratories of the
Global Polio Laboratory Network (GPLN). CDC also developed methods to
directly detect poliovirus from patient stool specimens, allowing
faster detection.
Essential technical capacity and program management expertise: CDC
directly contributes to polio eradication activities and is also used
to build in-country capacity. This includes the international
assignment of technical staff on direct 2-year assignments to WHO and
UNICEF to assist polio-endemic and polio-reinfected priority countries.
CDC's Stop Transmission of Polio (STOP) members continue to play a key
role in providing expertise on polio surveillance, data management,
campaign planning, implementation and evaluation, program management,
and communications in high-risk countries. In 2021, STOP has trained
and deployed more than 2,200 public health professionals to work on
polio surveillance, data management, campaign planning and
implementation, program management, and communications in high-risk
countries. STOP also provided support to 42 countries on responding to
COVID-19 in 2020-2021.
Vital Country-level Capacity: In Pakistan, CDC supported 81
National Stop the Transmission of Polo (NSTOP) officers for the
Expanded Program on Immunization (EPI), and data usage and risk
assessment officers distributed in 66 very high, high, and medium risk
communities in 3 provinces, and 10 managers/officers to support the
National Ministry of Health.
fiscal year 2023 budget request
Rotary respectfully requests $276 million in FY 2023 for the polio
eradication activities of CDC. These funds will ensure that CDC
provides technical and management expertise in polio endemic, outbreak
and at-risk countries; builds country level capacity to build
population immunity to prevent future outbreaks as well as capacity to
quickly identify and respond to outbreaks.
Increased funding is needed to address three specific areas
critical to protecting existing progress and capitalizing on the window
of opportunity to stopping transmission of all polio viruses: Outbreak
Response, Surveillance and Vaccine Procurement.
Outbreak Response
Increased funding is needed to maximize the effectiveness of
outbreak response campaigns and fully leverage the use of nOPV2 through
improvements in response planning, execution and monitoring to ensure
rapid, high-quality activities including those which:
--utilize and expand existing in country government coordination
mechanisms to establish polio control rooms, enabling the use
of real-time data for decision-making and an incident
management structure to streamline emergency operations;
--accelerate emergency outbreak response through the establishment of
incident command structures at global, regional and country
level to guide and direct outbreak response;
--digitize the entire outbreak response, from planning to campaign
monitoring and utilizing an evidence-based approach for clear
assessments of response coverage and quality, including age-
and sex disaggregated monitoring data; and
--ensure a stronger role for women in outbreak response operations
through increased participation in outbreak response oversight,
management, supervision and delivery.
Surveillance
Additional funding will support the expansion of surveillance
activities which provide confidence in both the presence and absence of
polio virus transmission, and specifically to:
--implement a new direct detection strategy and augment investment in
lab infrastructure and data information management to increase
regional and country capacity to detect and respond to
outbreaks and improve the quality and timeliness of
surveillance, and
--expand active surveillance, enhance the use of community-based
surveillance in hard to reach areas; and expand use of
environmental surveillance.
Vaccine Procurement
Additional funds will support procurement of vaccines, including
the recently introduced novel oral polio vaccine (nOPV2), a tool that
is being rolled out to accelerate control of circulating vaccine
derived polio. Twenty-five countries are already qualified to use this
vaccine, 12 have already conducted campaigns and up to forty countries
are preparing for use of this vaccine.
the role of rotary international
Rotary is a global network of leaders who connect in their
communities and take action to solve pressing problems. Since 1985,
polio eradication has been Rotary's flagship project, with members
donating time and money to help immunize nearly 3 billion children in
122 countries. Rotary's chief roles are fundraising, advocacy
(including resource mobilization and political advocacy), raising
awareness and mobilizing volunteers. There are nearly 300,000 members
throughout the United States who have raised more than U.S. $417
million of the more than U.S. $2.4 billion Rotary has contributed to
the Global Polio Eradication Initiative. This represents the largest
contribution by an international service organization to a public
health initiative ever. These funds have benefited 122 countries to buy
vaccine and the equipment needed to keep it at the right temperature,
and support the means to ensure it reaches every child. More
importantly, tens of thousands of our volunteers have been mobilized to
work together with their national ministries of health, UNICEF and WHO,
and with health providers at the grassroots level in thousands of
communities.
Rotary also plays a key role in encouraging country level
accountability. Rotary has National PolioPlus Committees, in the
endemic countries and over 20 outbreak/at-risk countries. These
national committees work to keep the spotlight on polio eradication
amidst competing priorities from the community level to the National
level.
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 including COVID-19 and will do so long after polio
is eradicated. $27 billion in health cost savings has resulted from
eradication efforts since 1988. Investing in polio eradication now may
cumulatively save an estimated $33.1 billion by 2100 in the form of
reduced costs of surveillance and vaccination. The costs to control
polio at today's low levels, plus costs to treat the survivors, would
be over U.S. $1 billion per year for decades to come. Without
investment now, by 2032 the world would be spending more to control the
virus. Polio eradication is a cost-effective public health investment
with permanent benefits. As many as 200,000 children could be paralyzed
annually in the next decade if the world fails to capitalize on the
more than $19 billion already invested in eradication. Success will
ensure that the investment made by the U.S., Rotary International, and
many other countries and entities, is protected in perpetuity.
______
Prepared Statement of the Ryan White Medical Providers Coalition
Chairwoman Murray, Ranking Member Blunt, and members of the
subcommittee, my name is Dr. Jehan Budak and I serve as the Assistant
Medical Director and as an HIV primary care physician for the Madison
Clinic at Harborview Medical Center in Seattle, Washington. I am
pleased to submit testimony on behalf of the Ryan White Medical
Providers Coalition (RWMPC), for which I serve as a Steering Committee
member. RWMPC is a national coalition of medical providers and
administrators who work in healthcare agencies supported by the Ryan
White HIV/AIDS Program funded by the HIV/AIDS Bureau (HAB) at the
Health Resources and Services Administration (HRSA) in the Department
of Health and Human Services.
First, I would like to thank the subcommittee for increasing FY22
funding for several of the Ryan White Program parts that support access
to HIV care and treatment, as well as increasing funding for the Ending
the HIV Epidemic (EHE) initiative at both the HIV/AIDS Bureau and the
Bureau of Primary Health Care at HRSA. These increases will help ensure
access to effective, comprehensive HIV care and treatment through the
Ryan White Program nationwide as well as support target EHE initiative
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. Increasing funding for
the Ryan White Program parts in FY23 would help jurisdictions
nationwide continue to deliver comprehensive, effective HIV care and
treatment as well as engage and retain new patients in a challenging
environment impacted by rising care and workforce costs. To sustain and
expand these critical services, I request $231 million (a 12 percent or
$25.5 million increase) in FY23 for Ryan White Part C, which supports
approximately 350 HIV medical clinics nationwide.
RWMPC also requests additional resources for the EHE initiative to
expand access to HIV prevention, care, and treatment, including $462.3
million for HRSA's EHE program. This funding would include $290 million
for the Ryan White Program EHE initiative to provide additional HIV
care and treatment, as well as $172.3 million for the Bureau of Primary
Health Care EHE intiative to support HIV prevention services, including
providing Pre-Exposure Prophylaxis (PrEP), medication to prevent HIV.
These funding levels also were requested by the President's FY23 budget
request.
It is important that increases for Ryan White Part C and for the
EHE initiative be new, additional funding and not a repurposing of
current resources. The additional pressure on the medical and public
health infrastructure in the wake of the COVID-19 pandemic, including
Ryan White clinics, is significant and limited resources cannot be
further stretched.
In fact, COVID-19 has demonstrated why our Nation needs to
strengthen the public heath infrastructure and medical clinics serving
people with HIV. Ryan White clinics were critical to responding to
COVID-19 and many Ryan White medical providers were pulled in as
leaders of the pandemic response in their jurisdictions. This worked
well as these providers are infectious diseases experts with
significant experience caring for vulnerable populations. These same
providers also have been key to addressing the overdose crisis in their
regions as well as increasing viral hepatitis and sexually transmitted
infections, all which intersect with the domestic HIV epidemic.
The flexibility of the Ryan White Program and the knowledge and
innovation of its medical providers also has allowed Part C clinics to
respond to the changing needs of patients and the health care system
throughout the transitions and challenges of the COVID-19 pandemic as
well as the escalating overdose crisis. Part C clinics have helped
people living with HIV by sustaining access to health care and
medication through telehealth and other services, such as case
management and transportation; by enrolling new patients who have lost
health insurance as a result of economic disruption; and by providing
overdose prevention and behaviroal health care to patients living with
HIV and mental health and/or substance use disorders.
Madison Clinic at Harborview Medical Center in Washington State has
Expanded Access to HIV Prevention, Care, & Treatment
Since 1986, the Madison Clinic has served as the leading source of
HIV primary care in the Pacific Northwest when its HIV care program was
expanded with the assistance of Ryan White Program funding. Since then,
the clinic has grown dramatically and now serves over 3,000 individuals
with HIV, most with complex medical and psychosocial needs.
Approximately 30 percent of our population is Black or African American
(Seattle overall has 7 percent Black representation), 15 percent is
Latinx, and 10 percent is Asian, Pacific Islander, or Native American.
47 percent of patients live at or below the Federal poverty level. Like
other HIV clinics across the US, ours serves an increasingly aging
population, with 60 percent of patients over the age of 45. As a
result, the burden of co-morbid illnesses, such as cancer,
cardiovascular disease, and metabolic complications such as diabetes is
extremely high. Alarmingly, 12 percent of patients lack permanent
housing, and many patients were negatively impacted by the intersection
of housing instability; the opioid and other drug crisis and HIV
epidemics; and the COVID-19 pandemic. Madison Clinic, like most Ryan
White Part C clinics, also receives support from other parts of the
Ryan White Program that help us provide medications, additional medical
care, and support services, such as case management and transportation,
all key to the comprehensive Ryan White care model that produces
outstanding outcomes.
Madison Clinic also provides Pre-Exposure Prophylaxis (PrEP)
services across the clinic to approximately 500 individuals at risk for
HIV. This critical HIV prevention tool is integrated at Madison Clinic
as part of prevention and primary care services. However, more support
for the PrEP program, including for PrEP navigators and lab tests, is
needed to scale up these services to meet patient needs.
Many Harborview patients struggle with HIV, substance use disorder
(SUD), and related infectious diseases, such as hepatitis C. In
response, in partnership with the Public Health Department for Seattle-
King County, the MAX Clinic was established to provide incentivized,
drop-in care for people living with HIV who have not yet achieved viral
suppression and who experience multiple barriers to care. The MAX
Clinic serves approximately 200 patients, and receives support from
Part B of the Ryan White Program as well as funding from the local
Health Department.
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 is infectious, so identifying,
engaging, and retaining individuals with HIV in effective care and
treatment saves lives and benefits public health by stopping HIV
transmission when individuals are virally suppressed.
In 2020, 89.4 percent of Ryan White patients were virally
suppressed--a 28.6 percent increase in the program-wide viral
suppression rate since 2010. In 2021, 92.8 percent of Madison Clinic
patients were virally suppressed in spite of the complex challenges
presented by the COVID-19 pandemic. The Ryan White Part C program's
comprehensive services engage and keep people in HIV care and
treatment. For example, 98 percent of HIV patients are on
antiretroviral therapy at Madison Clinic. Early, reliable access to HIV
care and treatment helps patients living with HIV live healthy and
productive lives and is more cost effective.
Part C Clinics are on the Frontlines of the Opioid Crisis and Provide
SUD Treatment
Ryan White clinics serve a significant number of individuals living
with both substance use disorder (SUD) and HIV. The majority of Madison
Clinic providers have the credentials to prescribe buprenorphine
therapy (medication assisted treatment for Substance Use Disorder), and
our providers treat viral hepatitis, supported by a multidisciplinary
team in our clinic. Part C clinics are able to deliver a range of
medical and support services, including overdose prevention and harm
reduction services, needed to prevent, intervene, and treat substance
use disorder as well as related infectious diseases, including HIV,
hepatitis C, and sexually-transmitted infections. The experience and
expertise of Ryan White Part C medical providers should be leveraged to
effectively respond to the overdose crisis and to help rapidly expand
access to urgently needed SUD services.
Funding for Prevention and Harm Reduction at CDC and Research at NIH is
Critical
While my testimony has focused on HRSA programs, the ability to
effectively respond to the syndemics of HIV, substance use disorder,
and related infectious diseases such as hepatitis C; 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. The AIDS Clinical Trials Unit, a member of the AIDS Clinical
Trials Group funded by the NIH, is co-located within Madison Clinic and
provides direct access for our patients to participate in research that
pushes the envelope on HIV and viral hepatitis treatment, including a
focus on HIV remission/cure strategies.
We request $310 million for CDC to provide surveillance, response,
and other HIV prevention services as part of the EHE initiative, as
well as $150 million for CDC to address the infectious diseases
consequences of the opioid and other drug epidemic, including by
supporting and expanding access to syringe services programs, harm
reduction, and overdose prevention. Finally, we support continued
robust funding for NIH, including for HIV research. This funding
supports discoveries that will help to end the HIV, hepatitis C, and
opioid and other drug epidemics and that informed the treatment and
prevention of COVID-19.
Thank you for your time and consideration of these requests, and
please do not 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 Jehan Budak, MD, Assistant Medical
Director, Madison HIV Clinic at the Harborview Medical Center in
Seattle, Washington.]
______
Prepared Statement of Safer Foundation
Thank you, Chairwoman Murray, Ranking Member Blunt, and members of
the subcommittee, for inviting me to submit testimony on behalf of the
Safer Foundation. My name is Kevin Brown and I serve as the Director of
Policy, Advocacy, and Legislative Affairs for the Safer Foundation. For
50 years, Safer has provided comprehensive workforce development and
reentry services for individuals with criminal legal histories seeking
employment. There is dignity in work, and Safer Foundation believes
that individuals who have made mistakes should have the opportunity to
be self-sufficient and contribute to their families and communities
through gainful, living wage employment. Clients come to Safer
Foundation because they want and need to work, and Safer helps clients
discover career path employment that is personally fulfilling and that
pays a living wage.
A critical Federal program that supports these efforts is the
Reentry Employment Opportunities (REO) program (also known as the
Reintegration of Ex-Offenders (RExO) program) within the Department of
Labor's Employment & Training Administration. I thank the subcommittee
for providing REO with $102 million in FY22. Given the need to train
people for the jobs our economy requires in industries such as health
care, technology, and logistics; to help employers identify the
qualified workers they need now; and to help people with criminal legal
histories find living wage employment to support successful, long-term
reentry, I urge the subcommittee to provide $200 million for the REO
program in FY23.
Authorized by section 169 of the Workforce Innovation and
Opportunity Act (WIOA), the REO program provides workforce preparation
and reentry services for both adults and young people. REO includes a
set-aside to provide services to prepare youth who are justice-system
involved and/or who have not completed school or other educational
programs for employment. Research has found that incarceration reduces
a formerly incarcerated person's earning potential by more than 52
percent,\1\ making workforce development services essential for long-
term employment and reentry success. In light of the costs of the
criminal legal system at the State, local, and Federal levels, the REO
program is crucial to incubating community-based models of successful
reentry through employment.
---------------------------------------------------------------------------
\1\ Craigie Terry-Ann; Grawert, Ames; Kimble, Cameron, Stiglitz,
Joseph (2020); Conviction, Imprisonment, and Lost Earnings: How
Involvement with the Criminal Justice System Deepens Inequality:
https://www.brennancenter.org/our-work/research-reports/conviction-
imprisonment-and-lost-earnings-how-involvement-criminal.
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REO is the only Federal program that focuses specifically on
workforce development and employment for people with records. As the
economy recovers and workforce needs continue to evolve and change, it
is essential to ensure that the significant number of people with
criminal legal histories has the reentry supports and workforce
training needed to achieve gainful employment and long-term reentry
success. Developing this pool of trained, talented, and motivated
workers also will help fill the workforce gaps employers currently
face, especially in sectors with critical worker shortages. For these
reasons, Congress should significantly expand the program in FY23 to
$200 million.
employment reduces recidivism and improves reentry outcomes
1 in 3 adults in the United States has a criminal record that
interferes with their ability to find a job.\2\ 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.\3\ The REO
program improves reentry success by working with individuals to
overcome employment barriers with training for jobs in local high-
demand industries through career pathways and industry-recognized
credentials and by providing needed reentry supports. Increasing REO
funding would expand access to these comprehensive workforce
development and reentry services that are especially needed now.
---------------------------------------------------------------------------
\2\ ``Research Supports Fair-Chance Policies'' (March 2016),
National Employment Law Project, footnote 1 on p. 7. Available at
http://www.nelp.org/publication/researchsupports-fair-chance-policies.
\3\ Visher, C., Debus, S., & Yahner, J. Employment After Prison: A
Longitudinal Study of Releasees in Three States. Washington, DC: Urban
Institute (2008).
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safer's reo-supported services increase employment by working with both
employers and employees
Safer Foundation offers comprehensive 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 both
participants and employers. In 2006, decades of experience and success
led Safer to become one of the original REO grantees.
In addition to working with reentering individuals and their
communities, Safer works closely with employers to identify what types
of trained employees are needed. In December 2021, the National
Federation of Independent Business (NFIB) reported that 60 percent of
businesses overall (and 95 percent of those hiring or trying to hire)
reported few or no qualified applicants for available positions. While
the demand for qualified workers exists, many newly unemployed
individuals may not meet the qualifications for particular industries.
Safer can be responsive to employer needs by tailoring its programs to
develop skilled, qualified workers for specific employment sectors and
has partnered with hundreds of employers to do so.
Safer's Training to Work (T2W) program, that was funded in part
with a REO grant, improved long-term employment prospects for clients
at Safer's Adult Transition Centers (ATC). Participants received case
management, education, and training that led to industry-recognized
credentials for in-demand employment, such as forklift operation,
welding, computer numerical control (CNC) operation, licensed
commercial driving (CDL) occupations, and Microsoft technologies
training. Given the program's strong employer and credentialing
components, REO 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. Increasing REO funding
in FY23 to $200 million, including funding for earn and learn
apprenticeship opportunities for in demand skills development, would
expand these efforts and help provide employers with more qualified
employees who are trained, talented, motivated to work.
safer's reo grant produced outstanding employment outcomes and reduced
recidivism
Safer's REO grant for the Training to Work (T2W) program
significantly outperformed employment targets and dramatically reduced
recidivism. For the first cohort of REO 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 expanded to include a second cohort who did even
better with an employment rate of 78 percent--30 percent higher than
the grant's target. Safer's REO T2W grant also reduced recidivism rates
beyond original targets. T2W's first participant cohort had an 11
percent recidivism rate, and its second participant cohort had a 9
percent recidivism rate -75 percent and 80 percent lower respectively
than the National recidivism rate of 44 percent.\4\
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\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.
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Safer's REO grant for their Advancing Careers & Employment program
also saw great outcomes with 577 enrolled clients. The ACE program
provided workforce development, education, trauma-informed case
management, and occupational training to adults (25 and older) who had
been released from incarceration within 180 days or who were currently
under supervision. Of the enrolled clients 93 percent developed an
employment plan and 60 percent completed job training in the areas of
carpentry, commercial driving, IT, hospitability, and solar panel
installation.
Program evaluation has shown that such success is related to the
comprehensive service model that REO 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 recent study found that in Illinois the average cost
associated with just one recidivism event is $151,662. 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. By
increasing and improving employment outcomes, the REO program invests
in formerly incarcerated people and their families, provides for a more
equitable recovery, and improves public safety.
investments in reo as a reentry and workforce development programs will
help ensure a more equitable economic recovery
Black people and other people of color are disproportionately
impacted by the criminal legal system. Black people are incarcerated at
more than 5 times the rate of white people. In 2018, the incarceration
rate of Black men was 5.8 times higher than that of white men, and
Black young men ages 18-19 years old were 12.7 times as likely to be
incarcerated as white young men in the same age group. In 2018, Black
women were almost twice as likely to be incarcerated as white women,
and Black girls were 3 times more likely to be incarcerated than white
girls.
Upon release, these disparities persist as a result of systemic and
institutional racism and discrimination; collateral consequences of
conviction that ban or limit legal access to employment, licensure, and
education supports; and a limited investment in resources for the large
number of people returning each year who come back to their communities
without the basic support and tools needed for long-term success.
Providing Federal resources for workforce development and reentry helps
to ensure greater success and helps to address unfair barriers that
exist as a result of systemic racism and inequities that disadvantage
individuals directly impacted by the criminal legal system. Reentry and
workforce development programs, such as REO, are critical to ensuring a
more equitable economic recovery for people with criminal legal
histories, especially Black people and people of color who are
disparately impacted by the criminal legal system.
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 extensive employment
and reentry needs nationwide, as well as the significant return on
investment related to reduced incarceration costs and reduced crime
costs borne by victims, families, and communities, I urge Congress to
allocate $200 million to the REO program in FY23.
Thank you so much for your time and consideration of this important
program. If you have questions or need additional information, please
don't hesitate to contact me at [email protected] or
Jenny Collier at colliercollective.org.
[This statement was submitted by Kevin Brown, Director of Policy,
Advocacy, and Legislative Affairs, Safer Foundation.]
______
Prepared Statement of Save the Children
Chairwoman Murray, Ranking Member Blunt, and honorable Members of
the subcommittee, thank you for the opportunity to provide testimony on
behalf of Save the Children about the critical investments in the
Departments of Health and Human Services and Education to ensure robust
investment in early childhood education programs and to support
unaccompanied children seeking safety and security in the U.S. In the
United States and around the world, Save the Children works every day
to give children a healthy start in life, the opportunity to learn and
protecting children in crisis. We do whatever it takes for children--
every day and in times of crisis--transforming their lives and the
future we share. We urge the subcommittee to support robust
appropriations for the Department of Health and Human Services,
specifically the Office of Refugee Resettlement and the programs of
Head Start/Early Head Start, Child Care and Development Block Grants,
and Preschool Development Grants, as well as the Department of
Education programs--21st Century Community Learning Centers and Promise
Neighborhoods.
administration for children and families
Child Care and Development Block Grant (CCDBG)
Request: $12.3 billion for the Child Care and Development
Block Grant.
Families continue to struggle to afford child-care and childcare
providers operate on razor thin margins. Despite significant
investments in recent years, fewer than 1 in 7 eligible families
received a subsidy under CCDBG. The much-needed relief provided by the
American Rescue Plan has been essential to keep the child care sector
afloat, and these temporary funds must be supplemented with an
expansion to the base CCDBG budget. States face significant pressures
on their existing CCDBG and child care relief funds: they must use a
portion of CCDBG funds for quality improvement, as well as implementing
new health and safety requirements, increasing payment rates, serving
more children, and expanding eligibility.
An additional $6.17 billion is needed--for a total of $12.3
billion--to avoid damaging funding cliffs, and support States in making
targeted investments to their child care systems aligned with longer-
term recovery needs.
Head Start and Early Head Start
Request: $15.4 billion for Head Start and Early Head Start.
Head Start and Early Head Start are key to providing and expanding
comprehensive early care and education to our poorest children. At the
current level of funding, Head Start serves less than half of eligible
preschoolers, and Early Head Start only serves approximately one in 10
eligible infants and toddlers. During the pandemic the remarkable Head
Start staff across the country have stepped up in order to maintain
quality programming by modifying both their in-home and in-person early
education programs. Without increased funds, the realities of a
competitive market will require programs to choose between cutting
access for children or underpaying and risk losing experienced and
skilled staff.
An additional investment of $4.4 billion--for a total of $15.4
billion--is needed for Head Start and Early Head Start in order to
maintain the high-quality early education opportunities the program
provides. Specifically, $1 billion is needed for expansion of Early
Head Start and Early Head Start-Child Care Partnerships, $596 million
to sustain the workforce through a cost-of-living adjustment, $2.5
billion for workforce compensation realignment, $262 million to provide
flexibility to address local quality improvement priorities, including
facilities, and $10 million to help develop the most effective and
appropriate staff for American Indian/Alaska Native programs.
Preschool Development Grants (PDG)
Request: $500 million for Preschool Development Grants
Birth through Five (PDG B-5) program.
Expanded investments in Preschool Development Grants will enable
more children to take advantage of early learning opportunities that
encourage their learning and growth and will support efforts to further
strengthen the quality of these programs. Research has demonstrated
that high-quality early education has long-term benefits for children,
especially low-income children, which far exceed the costs. And yet,
despite the proven benefits of high-quality early education in general
and the PDG program in particular, funding constraints mean that only
28 of the 46 planning grant recipients have received renewal grants.
An additional $210 million is needed--a total of $500 million--for
Preschool Development Grants to allow state and territories to increase
the quality and efficiency of existing early learning programs and
systems, while thinking strategically about how to optimize Federal and
State funding streams. Through PDG B-5, Congress has the unique
opportunity to foster state-led early learning initiatives, which is
particularly necessary as States continue to recover from the pandemic.
office of refugee resettlement (orr)
Pilot Grant Program for Federally Funded Respite/Welcoming Centers
Request: $50 million for the Grant Program for the
humanitarian reception of individuals and families
who have been released from DHS custody.
In order to create a more humane processing system at our Southern
border, the department should establish an ORR-administered Non-
Custodial Migrant Shelter Grant Program to support the establishment
and operation of shelters by non-profit, non-governmental organizations
at the border for families and single adults released from DHS custody.
These welcome centers would be run by local community and faith based
nonprofit organizations where families and adults can receive legal
orientations and other services, reducing time in CBP custody. The
funds for this program shall provide humanitarian assistance to
individuals and families encountered and released by DHS, including
basic medical care, psychosocial support, orientation to legal
responsibilities and rights, referrals to community-based case
management services at destination cities, and facilitation of onward
travel.
Increased Funding for Legal Services, Child Advocates, and Post-Release
Services
Request: $400,000,000 for the provision of legal services
for all unaccompanied children in the UC program,
$12 million for the appointment of a Child
Advocates, and $250 million shall remain available
to ensure rapid access to and high quality of post-
release services.
Unaccompanied children are uniquely vulnerable and face daunting
challenges in the immigration system. Many unaccompanied children have
valid claims for relief from deportation owing to past or feared harm,
abuse, abandonment, neglect, or human trafficking; and all children
have a right to a fair hearing in immigration court. Services provided
by qualified and independent legal counsel to unaccompanied children
increase the efficiency and effectiveness of immigration proceedings
and significantly reduce the failure-to-appear rate of children who are
released from HHS custody. Along these lines, independent Child
Advocates appointed pursuant to the TVPRA provide a vital resource to
the most vulnerable unaccompanied and separated children in Federal
custody and to Federal agencies charged with their care, release and
safe repatriation. While the additional funding recently appropriated
for family reunification services has helped, there continue to be
significant gaps in adequate home study and post-release service
provision.
Creation of Ombudsperson Within HHS to Advocate for the Rights of
Immigrant Children
Request: $10 for the creation of the Office of Ombudsperson
within HHS to provide independent child-welfare
focused recommendations to ORR and the Secretary
regarding the care of unaccompanied children.
Save the Children supports the creation of the Office of the
Ombudsperson for Immigrant Children in Federal Custody to advocate for
the quick, safe, and efficient release of immigrant children from
government custody whenever possible, including the right to review
placement decisions. Additionally, the Ombudsperson shall have access
to facilities data, reviews, and recommendations of the HHS Office of
Inspector General, in order to investigate systemic issues or
improvements of facilities or grantees. Other longstanding problems-
such as lagging reunifications or inappropriate placements in
restrictive settings-also merit additional scrutiny and escalation
mechanisms, as children and sponsors are often left with little to no
recourse to bring their concerns to bear. The office would support
Congress' longstanding view that family separation and detention are
generally not in a child's best interest and, in cases in which
detention or government custody is required, ensure that immigrant
children are only detained or held in government custody in the least
restrictive setting. In particular, this office would help mitigate and
promptly address conditions that adversely impact children's safety,
health, and wellbeing.
Restrictions on Use of Unlicensed Facilities
Request: None of the funds made available under the heading
``Department of Health and Human Services-
Administration for Children and families-Refugee
and Entrant Assistance'' may be used to house
unaccompanied children in any facility that is not
State-licensed or any proposed facility ineligible
for state licensure for the care of unaccompanied
children.
State licensing is an essential and irreplaceable guardrail to
ensure the safety of children in government custody. When the number of
children arriving at the border increased during 2021, the Biden
Administration opened new unlicensed facilities called ``emergency
intake sites'' to quickly transfer children from Customs and Border
Protection custody. These emergency intake sites were opened and have
been operating without adherence to legal standards or ORR policies
regarding services and safeguards, leading multiple whistleblowers to
speak out against deplorable conditions for children. State actions
like those taken by Texas and Florida to strip ORR facilities of state
licenses are concerning, as they leave facilities without an
independent oversight and monitoring mechanism to ensure the safety and
well-being of children.\1\ It is critical that ORR continues to
challenge these state decisions through litigation while also
proactively working with other States to expand its licensed capacity
of family- and community-based settings. Congress must ensure that ORR
is prepared for fluctuating numbers of arrivals at the border by
expanding its system of State-licensed facilities that are compliant
with the Flores Settlement and implementing policies that ensure
children's safe and prompt release from custody; it is never acceptable
to deprioritize child welfare.
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\1\ https://www.texastribune.org/2021/08/10/texas-child-migrant-
facilities-licenses/.
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department of education appropriations
21st Century Community Learning Centers (CCLC)
Request: $1.789 billion for 21st Century Community Learning
Centers.
Every day 11.3 million children are alone after school and are
unsupervised for an average of seven hours per week. Parents of more
than 19.4 million youth say their children would participate in an
afterschool program if one were available in their community. Programs
like CCLC help working families, keep young people safe during the
hours after school when juvenile crime peaks, and improve academic
achievement. Without funding for afterschool and summer learning
programs, students will lose out on essential learning opportunities
that help them prepare for school, college and careers, and can make up
for time lost during the pandemic. The pandemic has shown how important
robust afterschool and summer learning programs are to working families
and our most vulnerable students, and how vital resources are to
support these programs to ensure they are available and effective for
the children who need them.
Promise Neighborhoods
Request: $118 million for Promise Neighborhoods.
The Promise Neighborhoods program supports the implementation of
innovative strategies that improve outcomes for children in the
Nation's most distressed communities. To do so, communities must build
a continuum of supports for children, from cradle to career. This
holistic approach to improving the educational achievement of low-
income students ensures sustainable, community-driven changes and
interventions.\2\ Since its creation in 2010, this innovative program
has proven a to be strategic investment in high-needs communities,
funding communities with demonstrated success as well as new
communities who create plans for change. This funding would allow for
expansion of existing grants and new implementation grants, full
funding for extension grants, and the creation of new capacity-building
grants to strengthen communities' ability to deliver critical services
to children and families while also scaling city and regional
investment strategies.
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\2\ https://www.brookings.edu/research/the-harlem-childrens-zone-
promise-neighborhoods-and-the-broader-bolder-approach-to-education/.
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conclusion
On behalf of Save the Children, and our advocates across the
country, I want to thank the subcommittee for its continued leadership
and bipartisan work on these programs. I ask that you continue to make
a robust investment in children in FY23, increasing access to
opportunity, and ensuring a more prosperous America for generations to
come.
[This statement was submitted by Christy Gleason, Vice President of
Policy,
Advocacy, and Campaigns, Save the Children.]
______
Prepared Statement of the Seattle Indian Health Board
Chair Murray, Ranking Blunt, and members of the Senate Committee on
Appropriations--Subcommittee on Labor, Health and Human Services,
Education, and Related Agencies, my name is Esther Lucero. I am Dine,
of Latino descent, and third generation in my family living outside of
our reservation, I strongly identify as an urban Indian. I serve as the
President & CEO of the Seattle Indian Health Board (SIHB), one of 41
Urban Indian Organizations (UIO) nationwide. I have had the privilege
of serving SIHB for 6 years and have been providing congressional
testimonials for the past 4 years. I am honored to have the opportunity
to submit my testimony today requesting: the permanent authorization of
100 percent Federal Medical Assistance Percentage (FMAP) for UIOs;
encouraging behavioral health parity and integration through workforce
development initiatives across the U.S. Department of Health and Human
Services (HHS) and Health Resource and Services Administration (HRSA);
modifying the Substance Abuse and Mental Health Services Administration
(SAMHSA) Government Performance and Results Act (GPRA) tool; increasing
access to traditional health services through the Centers for Medicare
and Medicaid Services (CMS); and increasing administrative time under
the Indian Health Service (IHS) Loan Repayment Program. Addressing
these key issues can advance the health of urban American Indian and
Alaska Native (AI/AN) population.
SIHB is an Indian Health Service (IHS)-designated UIO and a HRSA
330 Federally Qualified Health Center, which serves nearly 5,000 AI/AN
living in the Greater Seattle Area in Washington state. Nationwide,
UIOs operate 74 health facilities in 22 States and offer services to
over 5.4 million AI/AN people in select urban areas. As a culturally
attuned service provider, we offer direct medical, dental, traditional
health, behavioral health services, and a variety of social support
services on issues of gender-based violence, youth development, and
homelessness. We are part of the Indian healthcare system and honor our
responsibilities to work with our Tribal partners to serve all Tribal
people, wherever they may reside.
We are home to a Tribal public health authority, Urban Indian
Health Institute (UIHI), 1 of 12 Tribal Epidemiology Centers (TEC) in
the country and the only TEC with a national purview-serving both rural
and urban AI/AN's. For over 20 years, UIHI has managed public health
information systems, managed disease prevention and control programs,
communicated vital health information and resources, responded to
public health emergencies, and coordinate these activities with other
public health authorities and UIO's nationwide. Due to a lack of access
to disease surveillance data, UIHI released the only AI/AN COVID-19
Data Dashboard,\1\ providing critical disease surveillance data to the
45 UIO service areas ensuring AI/AN communities have access to
culturally informed data collection, research, and evaluation.
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\1\ Urban Indian Health Institute (April 2022) COVID-1 Data
Dashboard. Retrieved from: https://www.uihi.org/covid-19-data-
dashboard/.
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Extend 100 percent Federal Medical Assistance Percentage (FMAP)
The American Rescue Plan act of 2021 temporarily extended 100
percent Federal Medical Assistance Percentage (FMAP) to UIOs. For
Washington state, the 2-year temporary extension has resulted in $18
million in Federal cost savings that will be captured in the Indian
Health Improvement Reinvestment Account. The investment account will be
able to expand its funding to activities, programming, and initiatives
that improve the health of AI/AN people across the State of Washington.
The permanent extension of 100 percent FMAP to UIOs upholds the
political status of Tribal citizens to ensure Federal dollars provide
Medicaid-coverage to urban AI/AN Medicaid beneficiaries. Permanent
extension of 100 percent FMAP reduces State Medicaid expenditures,
honors Federal trust and treaty responsibility to AI/AN people and
creates innovative healthcare delivery and systems changes to address
social determinants of health experienced in AI/AN communities.
Encourage Behavioral Health Parity and Integration
We request HHS improve partnerships and invest resources with the
Indian healthcare system to support recruitment and retention of health
care professionals to support health integration, consumer demand, and
identify need. A HRSA report found significant shortages of
psychiatrists, psychologists, social workers, school counselors, and
therapists across the country resulting in severe workforce deficits
for Indian County.\2\ For Washington state, HRSA has identified our
area as having a Mental Health Professional Shortage Area, with
only16.8 percent of mental health needs being met.\3\
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\2\ U.S. Department of Health and Human Services--Health Resources
and Services Administration. (2016). National Projections of Supply and
Demand for Selected Behavioral Health Practitioners: 2013-2025.
Retrieved from: https://bhw.hrsa.gov/sites/default/files/bureau-health-
workforce/data-research/behavioral-health-2013-2025.pdf.
\3\ KFF. (2021). Mental Health Care Health Professional Shortage
Areas (HPSA). Retrieved from: https://www.kff.org/other/state-
indicator/mental-health-care-health-professional-shortage-areas-hpsas/
?currentTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:
%22asc%22%7D.
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We ask that HHS encourage behavioral health parity and integration
by supporting initiatives to dual credential our providers to support
vacancies. We request HHS mirror the Veterans Benefits Administration
(VBA) dual certification process to support our providers. As AI/AN
people are disproportionately represented in poor behavioral health
outcomes, including higher rates of behavioral health conditions such
as mental health, substance use, or suicide,\4\ it is necessary for HHS
to invest in behavioral health parity through workforce developments
for Indian healthcare clinics.
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\4\ U.S. Department of Health and Human Services--Office of
Minority Health. (2021). Mental and Behavioral Health--American
Indians/Alaska Natives. Retrieved from: https://minorityhealth.hhs.gov/
omh/browse.aspx?lvl=4&lvlID=39.
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To address the workforce shortage of the Indian healthcare system
as a whole, we support the National Tribal Budget Formulation Workgroup
Recommendations, which includes $1 billion to the Indian healthcare
workforce development program to recruit and retain health
professionals to address chronic and pervasive health care provider
shortages. In addition, we ask that HHS advocate for, prioritize, and
support workforce development incentives at IHS, SAMHSA, and HRSA.
Increase Partnerships and Resources to Address Provider Shortages
As previously mentioned, we recommend HRSA support investments into
the Indian healthcare system through workforce development and
supporting dual credentialing of providers to address our workforce
deficits and meet the needs of Indian Country.
In order to ameliorate the significant vacancy rates for the Indian
healthcare system, and address challenges to filling the vacancies in
our facilities, SIHB has a strong workforce development program which
includes 6 family medicine residents, 6 public health interns, and 4
Master of Social Work program students. Of our 6 family residents, 4
identify as AI/AN and recent graduation rates show 80 percent of our
previous residents go on to work in communities of color and 50 percent
go on to work in Native communities. These types of training programs
increase AI/AN representation in provider positions.
As we develop the next generation of Indian Health Care Providers,
we must ensure that barriers for American Indian and Alaska Native
providers are eliminated, and we must increase leadership and
management opportunities for all Indian Health Care Providers in the
LRP program. We recommend that IHS modify LRP program requirements to
allow providers additional administrative time. Additionally, HRSA
investments can support vacancies, salary comparison, incentives,
training programs, and dual credentialing needed to support recruitment
and retention of AI/AN representation in the healthcare workforce.
Mandate CMS Reimbursement for Traditional Health Services
We request CMS support the integration of Traditional health
services as reimbursable services to improve access to quality health
services for AI/AN populations. Improved access to Traditional health
services support equity-based health care initiatives that are outcome-
oriented, patient-centered, and support primary and preventative
healthcare services.
In 2021, SIHB secured a SAMHSA grant to launch a Traditional Indian
Medicine (TIM) pilot that will code Traditional health services into
our Electronic Health Records (EHR) system and will replicate
reimbursable services. UIHI will provide evaluation on the pilot to
document the health benefits of integrating Traditional Practitioners
as part of our wraparound services. SIHB has uniquely integrated our
Traditional Practitioners into our clinical and social services teams
to provide over 39,000 encounters through assessments, counseling,
hospital visits, and group services. In March 2023, SIHB will release a
report documenting our methods to credential Traditional Practitioners,
code Traditional health services into EHR, replicate reimbursable
billing, and health outcomes from this pilot.
The pilot will demonstrate how integrating traditional services in
relatives' (patients) primary and preventative care can support and
improve health outcomes of our relatives. Traditional health services
can complement Western healthcare to support culturally attuned care
for AI/AN people and BIPOC communities across the Nation. We will
utilize our success story to advocate for Traditional health services
being a standard practice across healthcare systems in the Nation to
advance health equity by supporting outcome-oriented, patient-centered,
and primary and preventative healthcare services.
Modify the GPRA Tools for Low-Barrier and Culturally Attuned Services
The GPRA Modernization Act of 2010 modified the GPRA tool to better
serve the needs of providers. Twelve years later, we desperately need
the GPRA tool to be remodified to meet the modern needs of providers.
The Administration, Congress, and local elected officials have all
announced their efforts to address rising Substance Use Disorder (SUD)
rates. However, the GPRA tool continues to be a burden to SUD access
and treatment for our relatives due to the trauma triggering
questionnaire. Additionally, the GPRA tool places a strain on our
providers to meet required quotas. To ensure continued funding for our
critical services, providers must commit their time and resources to
fulling the requirements of the GPRA tool despite it not informing
multidisciplinary teams of local clinics.
Today, the GPRA performance tool is burdensome to patients and
providers. From providers in the Indian healthcare system, we have
heard the GPRA tool is trauma triggering for patients, time intensive
for patients and providers, and collects data that is solely beneficial
for the Federal Government. The GPRA tool must be modified to be
patient-centric, consider the time of our patients and providers, and
avoid collecting unnecessary data that does not benefit local clinics.
For example, UIHI and our medical division, are recipients of GRPA
funds and certain questions related to behavioral health do not benefit
our clinical team or research division.
We request HHS and SAMHSA modify the GPRA tool to be culturally
attuned and low barrier to support the needs of our relatives.
Additionally, we request HHS and SAMHSA modify the tool with the input
of providers, patients, and Native experts to shorten the screening
tool, ensure it is patient-centered, holds validity, administratively
considerate, and informs providers of the immediate and long-term care
of relatives.
Increase Administrative Time under the IHS Loan Repayment Program (LRP)
IHS has notified me amending the Loan Repayment Program (LRP)
structure is a legislative fix that must be addressed by Congress. As
the Indian healthcare system is severely understaffed, we must continue
to implement unique initiatives to support our providers, which
includes amending the IHS LPR to increase administrative time.
Under the current IHS LPR structure, medical providers are limited
to 20 percent of FTE allocated to administrative time. While direct
clinical care training is essential to the development of healthcare
providers, we must acknowledge that administrative time is an
opportunity to develop skillsets in leadership and operations
management. I believe this amendment will support providers in the
Indian healthcare system.
[This statement was submitted by Esther Lucero (Dine), MPP,
President & CEO, Seattle Indian Health Board.]
______
Prepared Statement of the Sex Education Coalition
Dear Chairwoman Murray and Ranking Member Blunt,
As we honor Sex Education for All month this May, the undersigned
55 organizations, committed to supporting the sexual and reproductive
health and rights of young people, request your support for fiscal year
(FY) 2023 funding that helps to ensure the health of our Nation's
youth. We urge you to protect the integrity of the Teen Pregnancy
Prevention Program (TPPP) and increase support for the Centers for
Disease Control and Prevention's (CDC) school-based HIV and STI
prevention efforts. We also encourage the elimination of the
abstinence-only ``sexual risk avoidance'' competitive grant program.
In the wake of numerous attacks on a young person's right to
evidence-based, accurate information and services, young people face
increased barriers, it is all the more critical that Congress address
the resulting persistent inequity and health disparities. While a young
person's health and wellbeing is about more than just the absence of
disease, or in the case of sexual health, the absence of HIV and other
STIs, unintended pregnancy, or sexual violence, the adolescent data on
these points alone, remain largely unchanged and alarming in recent
years.
You have likely seen some of these statistics: young people under
the age of 25 account for more than 1 in 5 new HIV infections; \1\ half
of the nearly 20 million estimated new STI cases each year in the U.S.
occur among those aged 15-24; \2\ 75 percent of pregnancies among young
people ages 15-19 are unintended compared to an overall unintended
pregnancy rate of 45 percent across all age groups; \3\ and 7 percent
of high school students reported being sexually assaulted by a
partner.\4\
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\1\ Centers for Disease Control and Prevention (CDC), U.S.
Department of Health and Human Services (HHS), HIV among youth, 2017,
www.cdc.gov/hiv/group/age/youth/index.html.
\2\ National Center for HIV/AIDS, Viral Hepatitis, STD, and TB
Prevention, CDC, HHS, Sexually Transmitted Disease Surveillance 2017:
STDs in Adolescents and Young Adults, Atlanta: CDC, 2018, https://
www.cdc.gov/std/stats17/adolescents.htm#ref1.
\3\ Guttmacher Institute, Adolescent sexual and reproductive health
in the United States, Fact Sheet, New York: Guttmacher Institute, 2017,
www.guttmacher.org/fact-sheet/american-teens-sexual-and-reproductive-
health.
\4\ Kann L et al., Youth risk behavior surveillance--United States,
2017, Morbidity and Mortality Weekly Report (MMWR), 2018, Vol. 67, No.
8, https://www.cdc.gov/healthyyouth/data/yrbs/pdf/2017/ss6708.pdf.
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Marginalized young people, such as young people of color, lesbian,
gay, bisexual, transgender, and queer (LGBTQ+) young people, and young
people with differing abilities, face disproportionate indicators of a
lack of systemic support for their sexual health. Lesbian, gay, and
bisexual high school students, for example, are more than twice as
likely as their heterosexual peers to experience partner violence, be
sexually assaulted by a partner, or be forced to have sex.\5\ Further,
35 percent of transgender students report experiencing bullying at
school, and the same percentage have attempted suicide.\6\
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\5\ Kann L, Sexual identity, sex of sexual contacts, and health-
related behaviors among students in grades 9-12-United States and
selected States, 2015, MMWR, 2016, Vol. 65, No. 9, www.cdc.gov/mmwr/
indss_2016.html.\6\ Johns MM et al., Transgender Identity and
Experiences of Violence Victimization, Substance Use, Suicide Risk, and
Sexual Risk Behaviors Among High School Students--19 States and Large
Urban School Districts, 2017, https://www.cdc.gov/mmwr/volumes/68/wr/
mm6803a3.htm.
\6\ Johns MM et al., Transgender Identity and Experiences of
Violence Victimization, Substance Use, Suicide Risk, and Sexual Risk
Behaviors Among High School Students--19 States and Large Urban School
Districts, 2017, https://www.cdc.gov/mmwr/volumes/68/wr/mm6803a3.htm.
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This data continues to highlight the importance of additional
resources to better meet the needs of young people, particularly as the
availability and quality of sexual health information and sexuality
education varies drastically across the country. Less than 43 percent
of all high schools and only 18 percent of middle schools in the U.S.
provide education on all of the 20 topics the CDC has deemed essential
to ensuring sexual health.\7\
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\7\ Centers for Disease Control and Prevention. School Health
Profiles 2018: Characteristics of Health Programs Among Secondary
Schools. Atlanta: Centers for Disease Control and Prevention; 2019.
Secura GM et al., Provision of no-cost, long-acting contraception
and teenage pregnancy, New England Journal of Medicine, 2014.
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Fortunately, research has shown us how we can better assist young
people in leading healthy lives. Access to medically accurate programs
that include sexual health information beyond abstinence works to
promote adolescent health. These programs help young people determine
if and when to have sex, teach them how to use condoms and
contraception when they do so, and reduce unintended pregnancies.\8\
Programs that are inclusive of LGBTQ+ youth and LGBTQ+-related
resources ultimately promote academic achievement and overall
health.\9\ Equipping young people with sexual decision-making and
relationship skills results in safer sexual behaviors. Additionally,
promoting gender equity reduces physical aggression between intimate
partners and improves safer sex practices for all genders.\10\
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\8\ 371(14):1316-1323; Community Preventive Services Task Force,
HIV/AIDS, other STIs, and teen pregnancy: group-based comprehensive
risk reduction interventions for adolescents, 2012,
www.thecommunityguide.org/hiv/riskreduction.html.
\9\ Schalet AT et al., Invited commentary: broadening the evidence
for adolescent sexual and reproductive health and education in the
United States, Journal of Youth and Adolescence, 2014, 43(10):1595-
1610, http://link.springer.com/article/10.1007/s10964-014-0178-8.
\10\ Ibid.
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support congressional intent and funding for tppp
Provide $150 million in programmatic funding and $6.8 million in
evaluation transfer authority to support the continuation of a wide-
range of evidence-based and informed community approaches to healthy
youth development and unintended pregnancy prevention. Support bill and
report language that protects the integrity of the program, which has
been subject to unlawful attacks by the Trump administration.
TPPP was established in 2010 to support community-driven, evidence-
based or informed, medically accurate, and age-appropriate approaches
to preventing pregnancy among adolescents, involving parents,
educators, researchers, and providers. In the program's first round of
grants, TPPP served over 500,000 young people, trained more than 7,000
professionals, and partnered with more than 3,000 community-based
organizations. In the second round of grants, 84 organizations in 33
States, the District of Columbia, and the Marshall Islands were awarded
funds to replicate evidence-based programs in communities with the most
need; conduct rigorous evaluation of new and innovative approaches to
prevent unintended pregnancy among teens; or build capacity to support
implementation of evidence-based programs.\11\
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\11\ OAH, HHS, HHS Office of Adolescent Health Fiscal Year 2016
Annual Report, Rockville, MD: HHS, 2016, www.hhs.gov/ash/oah/sites/
default/files/2016-annual-report.pdf.
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Beginning in 2017, The Trump Administration sought to eliminate and
undermine the integrity of the TPPP Program, including by proposing the
elimination of the program in the annual President's budget, attempting
early termination of ongoing projects, and awarding Tier 1 funding to
organizations implementing abstinence-only ``sexual risk avoidance''
programs. Prior to the Trump Administration's attacks, the second
program round was on track to reach 1.2 million young people. Courts
have ruled that these attacks were unlawful, as was the April 20, 2018,
Tier 1 Funding Opportunity Announcement, which violated TPPP's
appropriations language.
This funding would support the work of trained educators and
community partnerships, serve young people, and expand the body of
evidence available to best meet their needs in alignment with the
program's original intent. Further, funding for the Teen Pregnancy
Prevention Program and related evidence review and evaluation funding
will help to restore evidence-based implementation of grants by
supporting adequate technical assistance and high-quality evaluation,
reviving the evidence review, allowing grantees to meet the needs of
young people in the wake of COVID-19, and serving approximately 125,000
more young people.
In addition, TPPP evaluation funds have been used to examine the
efficacy of programs to inform new and innovative adolescent health
promotion approaches. The findings from evaluations of the first TPPP
grant cycle contributed to the body of evidence that guides educators
in making program decisions and highlighted the importance of continued
investment in new programs and strategies for various settings and
audiences.\12\ Learning both what works and what doesn't to support
adolescent health is equally important; in building this evidence base
and sharing it with communities and educators, TPPP uses a science-
based approach to the prevention of unintended pregnancy among young
people.
---------------------------------------------------------------------------
\12\ Margolis AL and Roper YV, Practical experience from the Office
of Adolescent Health's large scale implementation of an evidence-based
Teen Pregnancy Prevention Program, Journal of Adolescent Health, 2014,
54(3):S10-S14, www.jahonline.org/article/S1054-139X(13)00791-X/
fulltext.
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support funding for cdc's school based hiv prevention
Provide $100 million for CDC's school-based HIV and STI prevention
efforts within the Division of Adolescent and School Health (DASH) to
enable robust assistance and to States, districts, and schools in their
efforts to support student health and to lead research on school health
and a range of adolescent health behaviors.
The CDC provides a unique source of support for adolescent health
education in our Nation's schools by seeking to promote education,
health access, and environments where young people can gain fundamental
health knowledge and skills and establish healthy behaviors. Currently,
DASH provides funding to 28 school districts across the country to
implement school-based HIV and STI prevention programs in schools,
integrating substance use prevention, violence prevention, and other
public health approaches. The work within DASH expands the research and
evidence base of how to best meet the needs of young people, including
LGBTQ+ youth, youth of color and disabled youth. Currently, DASH
reaches 2 million young people at less than $10 per student.\13\ With
$100 million in appropriations, DASH could directly reach 20 percent of
all 56 million middle and high school students in the Nation, and reach
the other 80 percent of young people indirectly through widespread
implementation of safe and supportive environments in schools. This
funding increase would allow DASH to fund the 100 largest local
education agencies in the country, as well as all 57 State and
territorial education agencies.
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\13\ DASH, Centers for Disease Control and Prevention https://
www.cdc.gov/healthyyouth/about/cdc-dash-health-program-impact.htm.
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end abstinence-only funding
Eliminate funding for the abstinence-only-until-marriage ``sexual
risk avoidance'' competitive grant program, putting an end to harmful
programs, regardless of new packaging, that have been proven
ineffective at their primary goal of young people delaying sex until
marriage.
Despite more than two decades of rigorous research demonstrating
that programs with the sole aim of promoting abstinence until marriage
are ineffective at this primary goal, over $2 billion in Federal
funding alone has been wasted on this stigmatizing approach. In
addition to violating young people's human rights, federally funded and
independent analyses alike have found that youth participating in such
programs were no more likely to abstain from premarital sexual activity
than those who did not participate in the program.\14\ Moreover,
regardless of what they are called, abstinence-only programs withhold
necessary and lifesaving information that allow young people to make
informed and responsible decisions about their own health. These
programs have been found to include content that reinforces gender
stereotypes, ostracizes and denigrates LGBTQ+ youth, stigmatizes
sexually active young people and pregnant or parenting youth, and fails
to respect the needs of youth who have experienced sexual abuse or
assault.\15\ Rather than supporting the needs of young people,
abstinence-only programs undermine opportunities to empower youth to
make informed decisions about their health and wellbeing.
Young people deserve access to the information, education, and
resources they need to make healthy decisions about their lives.
Significantly more can, and needs to, be done to support the sexual
health education of our Nation's youth. Supporting these requests in
the FY 2023 funding is an essential step in the right direction.
Thank you for your consideration of our request to support the
health and wellbeing of young people.
Sincerely,
AAUW IL
Advocates for Youth
AIDS Alliance for Women, Infants, Children, Youth & Families
AIDS Foundation Chicago
AIDS United
American Academy of HIV Medicine
American Sexual Health Association
APLA Health
Black Women for Wellness
Caracole
Catholics for Choice
Center for Reproductive Rights
CHLP
EducateUS
Equality California
ETR
EyesOpenIowa
Families USA
Girls Inc.
Girls Inc. of Omaha
Healthy Teen Network
HIV+Hepatitis Policy Institute
If/When/How: Lawyering for Reproductive Justice
Ipas Partners for Reproductive Justice
Jacobs Institute of Women's Health
Michigan Organization on Adolescent Sexual Health (MOASH)
NARAL Pro-Choice America
NASTAD
National Family Planning & Reproductive Health Association
National Health Law Program
National Institute for Reproductive Health
National Partnership for Women & Families
National Women's Law Center
North Carolina AIDS Action Network
North Dakota Women's Network
Planned Parenthood Action Fund of New Jersey
Planned Parenthood Federation of America
Positive Women's Network-USA
Power to Decide
Reproductive Health Access Project
SIECUS: Sex Ed for Social Change
Silver State Equality
The AIDS Institute
______
Prepared Statement of SHEPHERD Foundation
Thank you for the opportunity to submit this testimony in support
of increasing funding for rare cancer research and for utilization of
molecular diagnostics in cancer care. These issues are deeply personal
for me. While undergoing Navy SEAL selection training at age 27, I
collapsed, and upon subsequent examination, was diagnosed with a rare
cancer called adenoid cystic carcinoma (ACC). I quickly discovered that
the options I had for treatment were extremely limited. While I was
able to get my tumor surgically removed, my disease is very likely to
return. I will have no choices for treatment beyond more surgery,
radiation, chemotherapy that is ineffective in treating ACC, and other
treatments which have not been proven to work for this cancer.
I found that I was not alone in facing this dire situation--the
lack of treatment options is the unfortunate reality for most rare
cancer patients. Frustrated at these shortcomings in ``modern''
medicine, I started a rare-cancer focused biotech company called
SHEPHERD Therapeutics and an associated nonprofit. We may be the only
pan rare-cancer focused organization in the world. I am extremely proud
of the work our team has accomplished. SHEPHERD is comprised of
patients and caregivers, those who have lost loved ones to rare
cancers, and those who are still fighting. Our mission centers on
ensuring that cancer patients have the treatments and diagnostics they
need to survive. To achieve this mission, funding for cancer research
must be robust and include directed funding streams for rare cancers
and those cancers currently without therapies. We believe one of the
best ways to accomplish these goals is the study of commonalities
across subsets of cancer to bring forth platform solutions that can
save lives near term. The use of broad-spectrum diagnostics, new
technologies such as AI, and precision medicine including molecular
diagnostics will ensure patients have access to the most effective
treatments, reduce the use of costly and ineffective therapies, and
enable physicians to select targeted treatments that improve outcomes.
From our research, we know 380 out of the 400 forms of cancer meet
the most conservative estimate of what constitutes a rare cancer, the
American Cancer Society's metric of fewer than six new diagnoses per
100,000 people per year. Rare cancers account for over 550,000 new
diagnoses each year--almost 1 in 3 new patients. Not only are all
pediatric cancers and primary brain cancers rare, but so are the
majority of cancers experienced by service members. Almost 70 percent
of the more than 60 forms of cancer that disproportionately affect
those who have served our country are rare forms, and only 25 of them
have an FDA approved targeted therapy. Many of those cancers are linked
to service-related exposures, such as asbestos, burn pits, radiation
and Agent Orange. Evidence suggests that even children of veterans who
were exposed to Agent Orange may have an increased risk of certain
cancers, like acute myeloid leukemia, according to the National Academy
of Sciences.
Beyond the pervasive impact of rare cancer, the lack of treatments
is abominable. Over 100 cancers are not even mentioned in the NCCN
treatment guidelines. The vast majority of new cancer patients--over 80
percent--who lack an FDA-approved targeted therapy for their cancer,
are rare cancer patients. In other words, 182 cancers lacked even one
FDA-approved targeted therapy, and 181 of them were rare cancers, as of
February 2019. That means that in 2019 almost 200,000 new rare cancer
patients faced their diagnosis without a modern treatment. Part of the
challenge is the lack of development due to insufficient financial
incentives to develop rare cancer therapies. This is in part is due to
a dearth of clinical trials that include rare cancer patients.
SHEPHERD's analysis of all cancer clinical trials between 2012 and 2016
showed that approximately 75 percent of all trials did not include even
one rare cancer by name. Only 13 percent of all rare cancers were
specifically named as a focus of a phase III clinical trial in those 5
years. More than four times as much money in that time frame was spent
on non-rare cancer trials than on trials which included a rare cancer.
Clinical trials are expensive to run, and pharmaceutical companies are
unlikely to choose to run a clinical trial in a small indication with
few patients when a drug will work for a large population, even if that
population already has dozens of drugs available for use, and even if
that drug is a ``me too'' therapy which provides little benefit over
the current standard of care. Most companies decide that the cost of
drug development cannot be justified by the potential market for a rare
cancer like mine, ACC, which has around 1,200 new patients a year.
Fortunately, in the last few years, the FDA has encouraged new
trial designs that allow trials to be run that target the molecular
drivers of a cancer, allowing all patients whose tumors exhibit that
genomic trait to potentially be included in the trial, regardless of
their specific diagnosis. More good news: This approach can reach
hundreds of thousands of additional patients right now via the
utilization of molecular diagnostics. These tests can identify the
presence of specific genomic alterations in a tumor that can be treated
with an FDA-approved therapy today. Unfortunately, most patients are
never even offered the option to receive these tests. Though broad
spectrum molecular diagnostics cost less than a single round of
chemotherapy, they are not reimbursed by CMS until the cancer has
metastasized or reoccurred. In the absence of these tests, patients who
lack a standard of care are most frequently put on generic chemotherapy
protocols that are highly toxic and have very low odds for success.
The incorporation of molecular diagnostics into the standard of
care protocol for cancer patients would improve treatment outcomes,
reduce the use of costly and ineffective drugs, and increase the
availability of data related to little-studied cancers like mine.
Providing molecular diagnostics to patients at the time of cancer
diagnosis, and especially to rare cancer patients, is the single most
powerful tool currently available to improve outcomes and advance the
science of oncology care. Underutilization of these readily available
technologies due to lack of awareness or lack of insurance coverage
needlessly puts the lives of cancer patients--including patients with
my cancer--at risk. Moreover, failure to provide CMS coverage of
molecular diagnostics is not just an issue of adequate care, it is also
an issue of equity. The majority of cancer patients are treated in
community hospitals that are unable to pay for diagnostics out of
pocket on behalf of patients. Patients treated at large NCI care
centers and academic hospitals, in contrast, more frequently conduct
and cover the costs of these tests. Surely, we can all agree that a
patient's specific diagnosis, geographic location, income level, or
form of insurance should not dictate the quality of their cancer care
or their odds of survival.
I respectfully request that you make the commitment in the FY 2023
Labor, Health and Human Services, and Education Appropriations bill to
changing the system to properly address rare cancer and help all cancer
patients. This would require a substantial increase in Federal spending
on rare cancers (following the well-established six new diagnoses per
100,000 people per year definition) and prioritize research, data
sharing, and translational development for cancers that lack an FDA
approved targeted therapy. Additionally, these changes must strive to
greatly increase the utilization of molecular diagnostics at both
diagnosis and reoccurrence to ensure that patients are receiving
appropriate therapies. Synergistic efforts to close the rare cancer
equity gap would also encompass the following: (1) CMS and private
insurance coverage of molecular diagnostics for all cancer patients at
the time of diagnosis and when the cancer reoccurs (2) Education on the
use and interpretation of molecular diagnostics for oncology care
providers, and (3) Establishment of more clinical trials that
specifically include rare cancers, either as an indication or via
mutational target inclusion criteria.
Behind the statistics there are over half a million Americans who
at this moment do not know that during the course of this year they
will be diagnosed with a cancer for which there is frequently no
treatment beyond what their parents or even their grandparents would
have been offered. Science sees no second-class citizens, only patients
in need of help. We ask Congress to do the same and take the necessary
steps to make cancer a thing of the past. Thank you.
[This statement was submitted by David Hysong, Founder & Chairman
of the Board, SHEPHERD Foundation.]
______
Prepared Statement of the Sleep Research Society
fiscal year 2023 appropriations recommendations
_______________________________________________________________________
--The sleep community joins the broader research community in
requesting $49 billion in discretionary funding for the
National Institutes of Health (NIH), an increase of $3.5
billion over FY 2022. Sleep impacts nearly every system of the
body and various disease processes, please provide proportional
funding increases for all NIH Institutes and Centers to further
support sleep, circadian, and sleep disorders research
activities.
--Please provide distinct, additional funding to further support
and implement the new Advanced Research Projects Agency for
Health (ARPA-H).
--The sleep community joins the broader public health community in
requesting $11 billion in overall funding for the Centers for
Disease Control and Prevention (CDC) to reinvigorate meaningful
professional education, public awareness, and surveillance
activities.
--Please provide the emerging CDC Chronic Disease Education and
Awareness (CDEA) program with $6 million, an increase of $3
million over FY 2022, to facilitate additional cooperative
agreements to advance timely public health efforts with
community stakeholders.
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, 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 FY
2023 appropriations for medical research and public health programs. We
would like to take this opportunity to thank you for providing ongoing
investment in the National Institutes of Health (NIH) and the Centers
for Disease Control and Prevention (CDC) through FY 2022
appropriations, particularly for increasing funding for the new CDC
Chronic Disease Education & Awareness Program, which is now supporting
a 3-year cooperative agreement on obstructive sleep apnea and can
support additional public health projects related to healthy sleep.
Please maintain the commitments to NIH, CDC, and the CDEA program and
increase funding as you and your colleagues work on appropriations for
FY 2023.
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.
nih sleep research activities
Sleep research activities at NIH and across the government are
coordinated through the National Center on Sleep Disorders Research
(NCSDR). Recently, NCSDR released its next 5-year plan for sleep
research and welcomed a dynamic new Director, Dr. Marishka Brown.
As a result of sustained investment in NIH and the scientific
opportunities in the field of sleep research, the research portfolio
has doubled in size from $233 million in FY 2014 to $470 million today.
This support has led to significant advancements in basic science,
including the 2017 Nobel Prize in Medicine. However, research gaps
remain in individual sleep disorders, such as narcolepsy, restless legs
syndrome, and Kleine Levin syndrome, and patients lack innovative
treatments, biomarkers, and new diagnostic tools. Team-based science
and translational research is now needed to build on the momentum in
sleep research and secure progress that benefits patients and the
healthcare system. To effectively and comprehensively move sleep
research forward in accordance with the goals of the new research plan,
the community recommends support for a sleep research network at NIH.
Sleep Research Network
The sleep/circadian health sciences field requests the
establishment of a Sleep Research Network that would allow for rapid
assembly of research investigators and support. This will facilitate a
prompt response to opportunities for multi-center clinical trials that
address key unmet public health needs pertaining to sleep health and
sleep disorders. Our members have the expertise necessary to implement
a network across key domains including; data informatics, recommended
measurement survey tools and technologies, site initiation/quality
control, protocol assessment, and commercial/industry partnerships.
Research networks like this can encourage development in emerging
priority areas via conferences, pilots, educational activities,
diversity/inclusion and public education/community engagement with the
ultimate goal of accelerating transformative research and intervention
to reduce risks and improve treatments.
Underserved Sleep Disorders State of the Science Conference.
While research in sleep and circadian has moved forward in
significant ways (including the 2017 Nobel Prize in Medicine), research
into specific sleep disorders at NIH remains relatively modest.
Narcolepsy, hypersomnia, Kleine Levin syndrome and many other sleep
disorders have only a few active grants at any given time. To ensure
scientific progress in sleep is translated to innovative therapies,
improved diagnostic tools, and meaningful health information, the time
is now for a State-of-the-Science conference on sleep disorders. This
collaborative opportunity will help create a long-range research plan
across NIH that features specific activities for various sleep
disorders. Committee recommendations and related interest in this
regard would be timely.
NIH Sleep Research Plan
To recognize NIH for its leadership on sleep research and to ensure
ongoing support for advancing sleep research activities, the community
asks for inclusion of the following report language for the National
Heart, Lung, and Blood Institute at NIH.
Sleep Research Plan.--The Committee commends the National Center on
Sleep Disorders Research for the release of the NIH Sleep Research
Plan. The Committee requests information on the resources and
assistance NCSDR will need to fully implement the plan and advance
stated goals. The Committee supports the use of infrastructure capable
of conducing multi-center sleep network studies and clinical trials
related to the Sleep Research Plan.
Sleep Health and Health Equity
Sleep is a critical component of efforts to promote health equity
and address health disparities. To raise awareness of ongoing efforts
and to encourage emerging activities, the community asks for inclusion
of the following report language for the National Institute of Health,
National Institute on Minority Health and Health Disparities.
Sleep Health and Health Disparities.--The Committee applauds
ongoing and emerging efforts by the NIMHD to advance health equity and
address health disparities, including cross-institute initiatives and
the initiatives identified by the recent Minority Health and Health
Disparities Research Framework. The Committee notes the
disproportionate impact of sleep deficiencies among populations that
experience health disparities in the United States, including American
Indians/Alaska Natives, Asian Americans, Blacks/African Americans,
Hispanics/Latinos, Native Hawaiians and other Pacific Islanders, sexual
and gender minorities, the socioeconomically disadvantaged; and those
living in underserved rural areas. The Committee encourages further
work in and collaboration with community stakeholders on the issue of
sleep health disparities.
CDC Chronic Disease Education & Awareness Program
Thank you for establishing the CDC CDEA program in FY 2021 by
providing an initial investment of $1.5 million and then doubling that
investment to $3 million for FY 2022. With the initial round of
funding, CDC is now supporting four meritorious 3-year cooperative
agreements in psoriasis, hearing loss, lymphedema, and sleep apnea.
With additional funding for FY 2022, there is an expectation that CDC
will fund another round cooperative agreements in critical public
health areas. To ensure that there can be another competition to meet
the growing demand for this important program for the third year,
please provide $6 million in funding for FY 2023. Further, the
community asks that report language for this program encourage the
participation of rare conditions in the CDC process and ensure that
broader categories, such as sleep health, can be supported along with
the current project on sleep apnea.
stacy's story
Stacy Edwards, of Langley, Washington, first started seeing doctors
for fatigue at the age of 15. As she got older, her health declined
significantly and she couldn't figure out why. Stacy could sleep 15-18
hours and still felt tired. Doctors were sympathetic, but usually
tested for anemia and mono and sent her on her way with no solutions.
At age 31, Stacy was finally referred for a sleep study. The results
showed that she woke up 29 times per hour due to breathing
obstructions, making her diagnosis of sleep apnea on the high side of
moderate (almost severe). Once diagnosed, Stacy started using a CPAP
machine and now raises awareness and reduces stigma via her website and
social media campaign called CPAP Babes. More recently, at age 34,
Stacy was diagnosed with a second sleep disorder, idiopathic
hypersomnia. She continues to look for better treatment options to
reduce her daytime sleepiness, brain fog, and other associated
symptoms. Stacy is passionate about sleep research and awareness
because she believes that she lost many years of her life in bed and
doesn't want others to suffer for years without answers the way she
did. Educating the public and the medical community is a high priority
for Stacy.
brittany's story
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. Two
years ago, 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 Namni Goel, PhD, President-Elect,
Sleep
Research Society, Project Sleep, and the stakeholder community.]
______
Prepared Statement of the Society for Human Resource Management
As the voice of all things work, workers and the workplace, SHRM is
the foremost expert, convener and thought leader on issues impacting
today's evolving workplaces. One such issue is employee mental health
and wellness. This year, Congress has an opportunity to make a modest
change that will have a significant impact in combating the mental
health crisis across the Nation.
To accomplish this, we urge the inclusion of Committee Report
language that will accompany the FY 2023 Department of Labor, Health
and Human Services (LHHS) and Related Agencies' Appropriations bill to
enable grant recipients under the Community Mental Health Block Grant
(MHBG) program overseen by the Substance Abuse and Mental Health
Services Administration (SAMHSA) to aid in workplace mental health.
As the country continues to recover and adapt to new norms in our
daily lives and how we work, workplaces and employers are a critical
nexus to improve mental health in America. Congress should take
meaningful steps to bolster SAMHSA's mission and reduce the impact of
substance abuse and mental illness should extend into our workplaces.
Adding explicit language that workplace-based programs are eligible for
funding through MHBG is a critical first step
Burnout, exhaustion and hopelessness are more common among workers
than ever before, and pandemic-related stresses are chipping away at
productivity. As millions of Americans return to physical worksites or
adjust to hybrid and fully remote work environments, mental health
issues will continue to mount. Employers are leading the charge to
improve mental health in the United States and are poised to do more
for the workforce with access to the necessary resources. The mental
health crisis is multi-faceted and requires commitment from Congress
and the private sector to address this pressing issue.
The proposed report language will not require additional funding or
increases to current allocations to SAMHSA, but it will allow for
programs to address workplace mental health and wellness. Throughout
the pandemic, organizations have relied heavily on their human
resources (HR) professionals as the primary function and stakeholder in
guiding employees and employers. These professionals proved themselves
invaluable by providing the necessary leadership, empathy and human
touch to keep workers connected while adapting to the pandemic and
evolving needs of the workforce. The infrastructure is in place for
effective workplace mental health programs and resources. The inclusion
of this report language would ensure that this framework is well-
utilized to meet the evolving needs of the Nation's workforce. The
proposed language addition to the Committee Report is provided below:
The Committee notes that undiagnosed and untreated mental
illnesses among America's workforce results in increased
absenteeism, lowered productivity at work, higher turnover, and
other factors that affect productivity. According to the
Society for Human Resource Management (SHRM) Foundation, this
lack of productivity amounts to an estimated loss of $23
billion every year in the United States. The Committee believes
that workforce mental health is an important part of ensuring
the overall mental health of our larger communities. To address
workforce mental health in the community context, the Committee
sees value in SAMHSA encouraging the use of Community Mental
Health Block Grant (MHBG) funds for this purpose. Therefore,
the Committee directs SAMHSA to issue guidance to State
agencies receiving MHBG funds to encourage public and nonprofit
organizations to use a portion of their MHBG funds to implement
evidence-based programs designed to educate and aid employers
in providing mental health assistance to their employees to
reduce the stigma and encourage the treatment of mental health
illness in the workplace.
In April 2022, the SHRM Foundation released a report on mental
health in the workplace. The report found that the extent of America's
mental health crisis is alarming. Tens of millions of U.S. workers are
experiencing mental health issues and are less productive because of
it, inundating organizations with a vast array of new challenges.
Mental health issues such as burnout and stress are hampering short-
term productivity and long-term business growth.
Without mental health resources, employees will keep struggling to
add value to their organizations. Employers that fail to offer mental
health benefits to their workers will struggle to stay afloat. Hundreds
of billions of dollars are at stake. In many ways, the U.S. economy-not
to mention public health-hangs in the balance.
We cannot afford to wait, as the following statistics demonstrate:
--The World Health Organization estimates that the global economy has
lost $1 trillion due to anxiety and depression alone.
--41 percent of HR professionals believe their organization does not
currently offer enough support for employees' mental health
care.
--Nearly 78 percent of organizations currently offer workplace mental
health resources or plan to offer such resources in the next
year.
--94 percent of HR professionals believe organizations can improve
the health of employees by offering mental health programs.
They point to increased productivity, employee retention and
attracting new talent as additional reasons to support mental
health.
The United States will continue to grapple with the ongoing effects
of the pandemic for an unknown period. Congress must continue to be
proactive in supporting its constituent communities, as it has
throughout the pandemic Granting SAMHSA the ability to issue workplace
mental health grants is the right place to start. Thank you for
considering our request.
______
Prepared Statement of the Society for Maternal-Fetal Medicine
The Society for Maternal-Fetal Medicine (SMFM) is pleased to submit
testimony in support of the pivotal work of the Department of Health
and Human Services (HHS) to optimize the health of birthing people and
infants. SMFM urges Congress to ensure that the National Institutes of
Health (NIH), Centers for Disease Control and Prevention (CDC), Health
Resources and Services Administration (HRSA), and Agency for Healthcare
Research and Quality (AHRQ) are adequately funded in fiscal year (FY)
2023. Specifically, SMFM urges the Committee to provide at least the
following in base program level funding:
--$49.048 billion for the NIH, with at least $1.816 billion of that
funding to support the Eunice Kennedy Shriver National
Institute of Child Health and Human Development (NICHD);
--$11 billion for the CDC, including $164 million for the Safe
Motherhood Initiative, $100 million for the Surveillance for
Emerging Threats to Moms and Babies initiative, and $210
million for the National Center for Health Statistics (NCHS);
--$9.8 billion for the HRSA, including $1 billion for the Title V
Maternal and Child Health Services Block Grant; and
--$500 million for AHRQ.
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 5,500 individuals, the core of
SMFM's membership is comprised of maternal-fetal medicine (MFM)
subspecialists. MFM subspecialists are obstetricians with additional
training in caring for individuals experiencing high-risk pregnancies.
Additionally, SMFM welcomes physicians in related disciplines, nurses,
genetic counselors, ultrasound technicians, MFM administrators, and
other individuals working toward optimizing the care of people 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 infants.
hhs secretary
Task Force Specific to Pregnant Women and Lactating Women (PRGLAC):
SMFM urges Congress to continue its strong support for NIH's efforts to
advance the inclusion of pregnant and lactating people in clinical
trials and research, specifically by taking necessary steps to
implement the recommendations of the PRGLAC Task Force. 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 the Task Force
further outlined how to implement those recommendations in a follow-up
report submitted to the HHS Secretary in 2020. Since that time, various
agencies across HHS have taken steps to implement PRGLAC
recommendation, but there has been no coordinated effort across HHS.
This disjointed implementation lends itself to potential duplication
and missed opportunities. As such, SMFM recommends that Congress
provide $200,000 in FY 2023 for the creation of an HHS advisory
committee to monitor and report on implementation of PRGLAC
recommendations.
The COVID-19 pandemic again emphasized the importance of including
pregnant and lactating people in clinical research. This population was
largely excluded from clinical trials for treatments and vaccines,
leaving them and their health care providers without clear evidence on
safety and efficacy to guide clinical decision-making. It is essential
that Congress support broader inclusion of pregnant and lactating
people in research, so that mothers have access to necessary
medications.
nih/nichd
The NICHD's investment in maternal and child health outcomes is
essential to understanding and combatting the rising maternal mortality
and severe morbidity rates and to optimizing maternal and child health.
Maternal-Fetal Medicine Units Network (MFMU): SMFM urges continued
strong support of the MFMU and asks that Congress allocate $30 million
to support the Network's ongoing work. Established in 1986, MFMU
pursues the development of treatments for medical complications during
and after pregnancy, including maternal mortality and morbidity,
preterm birth, low birth weight, fetal growth abnormalities, and fetal
mortality. MFMU is a critical resource to stemming the Nation's growing
maternal health crisis and addressing emerging threats to maternal and
infant health. For instance, during the COVID-19 pandemic, the MFMU was
able to quickly pivot resources to monitor the health impact of COVID-
19 on pregnant people and their infants, as well as researching
effective treatments for pregnant populations. We hope that the NICHD
will ensure the MFMU's continued success by maintaining 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. 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 recent increase in
maternal mortality and severe morbidity in the United States. 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 risk of death in the immediate newborn period as well as
in infancy and can cause long-term complications. Although the survival
rate is improving, many preterm infants have life-long disabilities
including cerebral palsy, intellectual disabilities, respiratory
problems, and hearing and vision impairment. Preterm birth costs the
United States $25.2 billion annually.\1\ 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 to change medical practice across the
country.
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\1\ Waitzman NJ and Jalali A. Updating National Preterm Birth Costs
to 2016 with Separate Estimates for Individual States. Salt Lake City,
UT: University of Utah; 2019. Available at: https://
www.marchofdimes.org/peristats/documents/Cost_of_Prematurity_2019.pdf.
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cdc
The CDC's Division of Reproductive Health (DRH) and National Center
for Birth Defects and Developmental Disabilities (NCBDDD) are doing
important work related to pregnancy. Data collection efforts related to
pregnancy outcomes, maternal mortality, and medications in pregnancy
must continue.
Maternal Mortality: CDC's ongoing support for State-based perinatal
quality collaboratives and new funding for state maternal mortality
review committees (MMRCs) is essential to address the Nation's
unacceptable maternal death rate. According to the NCHS, the maternal
mortality rate in 2020 was 23.8 deaths per 100,000 live births, and
racial disparities persisted with a maternal mortality rate of 55.3
deaths per 100,000 live births among non-Hispanic black women compared
to 19.1 among non-Hispanic white women.\2\ SMFM fully supports
Congress' attention to reducing maternal mortality through CDC's Safe
Motherhood Initiative, and we ask that you meet the President's budget
request by providing at least $164 million for this work.
---------------------------------------------------------------------------
\2\ Hoyert DL. Maternal mortality rates in the United States, 2020.
NCHS Health E-Stats. 2022.Available at https://www.cdc.gov/nchs/data/
hestat/maternal-mortality/2020/maternal-mortality-rates-2020.htm.
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Emerging Threats Initiative: SMFM also urges Congress to allocate
$100 million for the CDC's Surveillance for Emerging Threats to Moms
and Babies initiative housed at the NCBDDD. The State-level
surveillance infrastructure supported by the initiative allows state
public health departments to monitor health threats stemming from
maternal exposures, including infectious diseases such as COVID-19.
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 Maternal
and Child Health (MCH) Block Grant. The funds provided through the MCH
Block Grant increase access to comprehensive prenatal and postnatal
care--especially for patients who are most at risk for adverse health
outcomes. The Title V MCH Block Grant programs save Federal and State
governments money by expanding the 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 to
provide at least $1 billion for this important program that will help
improve maternal and infant health across the United States.
ahrq
Projects conducted at AHRQ are critical to translate research 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--those with comorbidities and co-
existing conditions, including high-risk pregnant people. The agency's
work is instrumental in collecting data; funding health services
research; and, most importantly, disseminating findings to clinicians
to improve maternal health care. Together, AHRQ's intramural programs,
such as the Healthcare Cost and Utilization Project (HCUP), Evidence-
Based Practice Center Program and Safety Program in Perinatal Care, and
extramural research are essential to reducing maternal deaths and
adverse pregnancy outcomes. By providing at least $500 million to AHRQ
in FY 2023, Congress will allow AHRQ to expand its maternal health
portfolio, improving care for nearly 4 million pregnant patients each
year.
conclusion
The COVID-19 pandemic has further exposed existing inequities and
gaps within our healthcare system for people across the country,
including pregnant people. It is more important than ever to prioritize
the needs of pregnant people and their infants in Federal programs from
research, to public health surveillance, to care. We urge HHS to
prioritize and adequately fund maternal health efforts for that aim to
reduce maternal mortality and severe morbidity during and after the
pandemic.
With your support of vital HHS programs, obstetric researchers,
clinicians, and patients can address the complex problems of pregnancy
and truly improve the health and wellbeing of mothers and infants.
Please direct any inquiries about this testimony to Rebecca Abbott,
SMFM's Director of Government Relations ([email protected]).
______
Prepared Statement of the Society for Neuroscience
Chair Murray, Ranking Member Blunt, and members of the
subcommittee, on behalf of the Society for Neuroscience (SfN), we are
honored to present this testimony in support of robust appropriations
for biomedical research at the National Institutes of Health (NIH). SfN
urges you to provide at least $49 billion, a $4 billion increase over
FY22, in funding for the NIH for FY23, including the full release of
funding for the NIH Innovation Account for 21st Century Cures programs
and $680 million for the Brain Research through Advancing Innovative
Neurotechnologies (BRAIN) Initiative. As both a researcher and a
Professor in the Department of Biology at Brandeis University, I
understand the critical importance of Federal funding for neuroscience
research in the United States. My own research identified the ability
of brain circuits to ``tune themselves'' to maintain the appropriate
level of excitability, which is critical for healthy brain function.
My research group, supported by NIH funding, made fundamental
discoveries in how neurons self-adjust their excitability, making it
easier or harder to send electrical messages to other neurons. Over the
past two decades, we have unearthed a family of mechanisms that allow
for this unique flexibility called ``homeostatic plasticity,'' so
neurons can change the rate they send messages and protect
communication in the face of outside disturbances. Our work has many
wide-reaching implications: We are studying how learning and memory
suffer when these mechanisms malfunction; We are exploring how being
awake or asleep affects these mechanisms; and we are investigating how
States of being too excitable or not excitable enough contribute to
disorders like epilepsy and autism spectrum disorder. Basic research,
like my own, is paramount to understanding the brain at a level deep
enough to develop treatments and interventions for diseases and
disorders.
SfN believes strongly in the research continuum: basic science
leads to clinical innovations, which leads to translational uses
impacting the public's health. Basic science is the foundation upon
which all health advances are built. To cure diseases, we need to
understand them through fundamental discovery-based research. However,
basic research depends on reliable, sustained funding from the Federal
Government. SfN is grateful to Congress for its investments in
biomedical research and increases for NIH over the last 6 years.
Growing the NIH budget over $9 billion in that period is exactly the
sustained effort that is needed, and your continued support will pay
dividends for years to come.
the importance of the research continuum
NIH funding for basic research is critical for facilitating
groundbreaking discoveries and for training researchers at the bench.
For the United States to remain the leader in biomedical research,
Congress must continue to support basic research that fuels discoveries
as well as the economy. 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 not used
elsewhere in the research pipeline. These opportunities create
discoveries--sometimes unexpected discoveries--expanding 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 affecting millions of people in the United States and beyond.
NIH basic research funding is also a key economic driver of science
in the United States through funding universities and research
organizations across the country. Federal investments in scientific
research fuel the Nation's pharmaceutical, biotechnology and medical
device industries. The private sector utilizes basic scientific
discoveries funded through NIH to improve health and foster a
sustainable trajectory for America's research and development
enterprise. Basic science generates the knowledge needed to uncover the
mysteries behind human diseases, which leads to private sector
development of new treatments and therapeutics. Industry typically does
not fund research on this important first step given the long-term path
of basic science and pressure for shorter-term return on investments.
Congressional investment in basic science is irreplaceable on the
pathway for development of drugs, biologics, devices, and other
treatments for brain-related diseases and disorders.
For example, in January 2022, NIH launched Phase 1 of Neuromod
Prize to increase the development of neuromodulation therapies.
Neuromodulation treatments act directly on peripheral nerves to improve
organ function and have the potential to treat a variety of conditions,
including heart failure. The Neuromod Prize is part of the SPARC
(Stimulating Peripheral Activity to Relieve Conditions) NIH initiative.
With SPARC, NIH will combine early-stage research and clinical
applications to provide targeted treatments for multiple organ
functions.
Another example of NIH's success in funding neuroscience is the
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. By including funding in 21st Century Cures, Congress
helped maintain the momentum of this endeavor. Note, however, using
those funds to supplant regular appropriations is counterproductive.
There is no substitute for robust, sustained, and predictable funding
for NIH. SfN appreciates Congress' ongoing investment in the BRAIN
Initiative and urges its full funding in FY23. Some recent exciting
advancements in NIH funded neuroscience research include the following:
covid-19 and its impact on adolescent mental health & drug use
Since March 2020, Covid-19 has had a profound impact on our lives,
physically and mentally. Adolescence is a challenging transition
period, and researchers recognized the need to determine the impact of
the pandemic on early adolescent's mental health. Using data from the
Adolescent Brain Cognitive Development (ABCD) study, researchers fitted
machine learning models that considered factors for adolescent
psychological distress and emotional wellbeing during the Covid-19
pandemic. Factors that predicted adolescent psychological distress
during the pandemic included being female, pre-pandemic internalizing
symptoms, and sleep problems. They also found healthy habits (exercise,
better sleep) and social support reduced detrimental effects of the
pandemic on adolescent mental health. This study stresses the
importance of mental health in vulnerable populations to complement
investigations into the physical manifestations of the pandemic.
While adolescent mental health challenges have increased during the
pandemic, adolescent drug use significantly decreased in 2021 since the
start of the Covid-19 pandemic. These results come from the Monitoring
the Future survey, funded by the National Institute of Drug Abuse.
Since 1975, the Monitoring the Future has recorded drug and alcohol
intake of adolescents across the United States at three time periods:
lifetime, past year, and past month use. Findings from the survey show
10th and 12th graders alcohol, marijuana, nicotine, and illicit drug
use decreased significantly from 2020 to 2021. This decrease was the
largest 1-year decrease recorded in the Monitoring the Future survey
since 1975. The results taken from the survey demonstrate how the
pandemic has impacted drug use in adolescents. It will be interesting
to see how adolescent drug use changes from 2021-2022, with the
continuation of the pandemic.
congress & nih must support access to models necessary for neuroscience
discovery
SfN urges the Committee to appropriate funding for biomedical
research without restriction on the use of animal models. Adequate NIH
funding is necessary to advancing our understanding of the brain;
however, full realization of this funding's promise requires
appropriate access to research models, including non-human primates and
other animal models. Animal research is highly regulated to ensure the
ethical and responsible care and treatment of the animals. SfN and its
members take their legal and ethical obligations related to this
research very seriously. While SfN recognizes the goal of the
reduction, refinement, and eventual replacement of nonhuman primate
models in biomedical research, much more research and time is needed
before such a goal is attainable. Premature replacement of non-human
primate and other animal models may delay or prevent the discovery of
treatments and cures-not only for neurological diseases like
Alzheimer's disease, addiction, and traumatic brain injury, but also
for communicable diseases and countless other conditions. There are
currently no viable alternatives available for studying biomedical
systems that advance our understanding of the brain and nervous system;
or when seeking treatments for diseases and disorders like depression,
addiction, Parkinson's Disease, and emotional responses. This research
is critically important and has the opportunity to benefit countless
people around the world. SfN urges Congress to work with the NIH to
ensure this important well-regulated research can continue.
funding in regular order
SfN joins the biomedical research community supporting an increase
in NIH funding to at least $49 billion for existing NIH institutes and
centers, a $4 billion increase over FY22. 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, more economic growth and more improvements in
the public's health. Equally as important as providing a reliable
increase in funding for biomedical research is ensuring 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
new grants and to fully fund continuation 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 will be realized, or
operating a lab with 90 percent of the awarded funding until
appropriations are final. All of the positive benefits research
provides in this country may be negatively impacted by these real time
considerations. SfN strongly supports the appropriation of NIH funding
in a timely manner, which avoids delays in approving new research
grants or causes reductions in funding for already approved research
funding. Meeting the example Congress set in 2018 would be another
substantial benefit to science.
SfN thanks the subcommittee for its continued support of biomedical
research and looks forward to working with you to ensure the United
States remains the global leader in neuroscience research and
discovery. Collaboration among Congress, the NIH, and the scientific
research community has created great benefits for not only the United
States but also for people around the globe suffering from brain-
related diseases and disorders. On behalf of the Society for
Neuroscience, we urge you to continue your strong support of biomedical
research.
[This statement was submitted by Gina Turrigiano, PhD, President,
Society for Neuroscience.]
______
Prepared Statement of the Society for Women's Health Research
The Society for Women's Health Research (SWHR)--a more than 30-
year-old national nonprofit with a mission of promoting research on
biological sex differences in disease and improving women's health
through science, policy, and education--is pleased to submit testimony
outlining SWHR's funding requests for fiscal year (FY) 2023. While SWHR
believes that all Federal research is complementary and thus supports
robust funding across all Federal research and public health agencies,
we specifically urge appropriators in FY 2023 to support a program
level of at least $49 billion for the National Institutes of Health
(NIH), at least $62.5 million for the Office of Research on Women's
Health (ORWH) and $1.816 billion for the Eunice Kennedy Shriver
National Institute of Child Health and Human Development (NICHD).
Biological sex differences influence disease development,
progression, and response to treatment, while social determinants of
health, including gender, affect disease risk, health care access, and
outcomes. Yet, due to years of insufficient research addressing women,
we have limited knowledge about women's health relative to men's
health.
This lack of prioritization, or inattention, to women's health has
not only affected our understanding about key aspects of women's health
and overlooked a critical portion of the population, but it has also
amounted to tremendous money lost for the U.S. economy. Recent research
conducted by the RAND Corporation revealed that ``even a slight
increase in capital invested in basic research into women's health
would unleash staggering returns...'' The study's simulations, which
examined the potential return on investment if NIH were to double the
budget for studies specifically assessing the health of women, showed
the tremendous opportunity that lies in women's health:
``By doubling the NIH budget for research on coronary artery
disease in women from its current $20 million, we could expect
an ROI of 9,500 percent. Studies focused on rheumatoid
arthritis in women receive just $6 million a year. Doubling
that would deliver an ROI of 174,000 percent and add $10.5
billion to our economy over the 30-year timespan.''--Chloe
Bird, Fortune
Robust, sustained funding for Federal research entities that
prioritize research into diseases, conditions, and life stages that
differently, disproportionately, or solely affect women across the
lifespan is critical to achieve health equity for women. The COVID-19
pandemic served as an important reminder that sex and gender
differences that exist across diseases (e.g., men are more at risk for
worse outcomes from COVID-19 and have a heightened risk of death, while
women are more likely to be diagnosed with post-acute sequelae of
COVID-19 and report more adverse events following vaccinations) and
that health disparities are still widespread, with women
disproportionately affected by socioeconomic challenges, food
insecurity, domestic violence, and mental health concerns related to
COVID-19.
To continue building on the progress made and to ensure women's
needs are represented in Federal research, SWHR urges Congress to
prioritize women's health across the lifespan and women's health
research by supporting NIH, ORWH, and NICHD in fiscal Year2023 funding
legislation.
the national institutes of health
The NIH is the premier medical research agency in the United States
and the largest source of funding for biomedical and behavioral
research in the world. As such, its mission is vital to promote the
overall health and well-being of Americans by fostering creative
discoveries and innovative research; training and supporting the next
generation of researchers to ensure a diverse, strong research pipeline
to continue scientific progress; and expanding the scientific and
medical knowledge base.
Continued support for the NIH is necessary to drive women's health
forward. Across NIH, researchers conduct and support basic, clinical,
and translational research on diseases and conditions that impact women
across the life stage. Among the NIH initiatives specifically aimed at
improving women's health is the Trans-NIH Strategic Plan for Women's
Health Research. Released in 2019, the 5-year Strategic Plan laid out
broad NIH goals to complement its more targeted women's health
programs, advancing women's health research, developing a well-trained
biomedical research workforce, and promoting the role of sex and gender
influences in research. Initiatives like these--along with the NIH's
continued emphasis on improving standard research methodologies to
address sex and gender and providing funding for women's health
research--will help us achieve consequential progress in making women's
health mainstream.
SWHR urges Congress to provide a program level of at least $49
billion for the NIH, a $3.5 billion increase in the NIH appropriation
plus funding from the 21st Century Cures Act for specific initiatives,
in FY 2023. Additionally, SWHR asks that appropriators ensure that any
funding for the new Advanced Research Projects Agency for Health (ARPA-
H) or other targeted programs like pandemic preparedness supplement
this base budget recommendation rather than supplant the foundational
investment in NIH. This funding level, which is supported across the
public health and scientific research communities, would allow for
meaningful growth above inflation in the base budget and would expand
NIH's capacity to support promising science in all disciplines
(including women's health research) across the agency, keeping the NIH
competitive on the world stage.
the office of research on women's health
The biomedical sciences for decades have treated men and women as
interchangeable subjects. Research on diseases and treatments were
conducted almost exclusively on male subjects as researchers sought to
avoid the presumed ``complications'' introduced by including female
subjects in their work. This approach ignored the impact of sex and
gender on human development and disease progression, overlooking a
critical slice of the population and leaving untapped important areas
of scientific opportunity.
As the NIH hub for coordinating women's health research, ORWH
ensures women are represented across all NIH research and works to
improve representation of women and women's health issues within
federally funded research. ORWH provides critical leadership on
programs, such as the Specialized Centers of Research Excellence, or
SCORE, which advances translational research on the role of sex
differences in the health of women, and the Implementing a Maternal
health and Pregnancy Outcomes Vision for Everyone (IMPROVE) Initiative,
which coordinates interdisciplinary research on factors impacting
maternal mortality.
SWHR recommends that Congress provides $62.5 million in funding for
ORWH in FY 2023. This increase will allow ORWH to build upon its
existing programs, take steps in realizing a vision where sex and
gender are integrated into research and where women receive
personalized, evidence-based prevention and treatment, and continue its
efforts coordinating and elevating women's health research across NIH.
the eunice kennedy shriver national institute of child health and human
development
The NICHD, founded to investigate human development throughout the
life process, also provides a home for women's health research in areas
across reproductive sciences and maternal health, including
infertility, pregnancy, and menopause. The Institute's research
portfolio is critical for addressing pressing public health issues,
such as pregnancy outcomes, gynecological health issues, such as
uterine fibroids and endometriosis, and the environmental, behavioral,
and social factors that shape women's health.
Among NICHD's myriad contributions to women's health research is
its work with respect to pregnant and lactating individuals. Nearly 94
percent of women take at least one medicine during pregnancy, and 50
percent take at least one medication during the postpartum period. Yet,
pregnant and lactating women are often excluded from biomedical
research. Consequently, these women and their health care providers do
not have access to the information they need to make confident
decisions about their health care.
As part of its efforts to support these populations is NICHD's
Maternal and Pediatric Precision in Therapeutics (MPRINT) Hub, which
will serve as a national resource for expertise in maternal and
pediatric therapeutics to conduct and foster therapeutics-focused
research in obstetrics, lactation, and pediatrics while enhancing
inclusion of people with disabilities. The MPRINT Hub will aggregate,
present, and expand the available knowledge, tools, and expertise in
maternal and pediatric therapeutics to the broader research, regulatory
science, and drug development communities.
SWHR calls on Congress to provide at least $1.816 billion for NICHD
in fiscal Year2023 so the Institute can continue driving advancements
in women's reproductive health and funding research and training
activities that help address some of the Nation's leading public health
issues.
***
SWHR appreciates the opportunity to submit this testimony and
thanks the subcommittee of considering our requests of a program level
of at least $49 billion for NIH, at least $62.5 million for ORWH and
$1.816 billion for NICHD. We look forward to working with you to ensure
the highest possible support for Federal research agencies in FY 2023.
If you have questions or need any additional information, please
contact SWHR President and CEO Kathryn G. Schubert at [email protected].
______
Prepared Statement of the Society of Gynecologic Oncology
The Society of Gynecologic Oncology thanks the subcommittee for the
opportunity to submit comments for the record. Enclosed are our report
language recommendations to encourage the National Cancer Institute to
prioritize research activities to address endometrial cancer
disparities in people of color. The Society of Gynecologic Oncology
(SGO) is the premier medical specialty society for health care
professionals trained in the comprehensive management of gynecologic
cancers. The SGO's 2,000 members, who include physicians, nurses, and
other advanced practice providers, represent the entire oncology team
dedicated to the treatment and care of patients with gynecologic
cancers. The SGO's strategic goals include advancing the prevention,
early diagnosis, and treatment of gynecologic cancers by establishing
and promoting standards of excellence. Key priorities for the SGO are
to advocate for more equitable care for all patients and to support
research aimed at improving outcomes for diverse patient populations.
Endometrial cancer is the most common gynecologic cancer in the
United States, and the fourth most common malignancy among American
women, behind breast, lung, and colorectal cancers. According to the
American Cancer Society, the incidence and mortality rate of uterine
corpus cancers, over 90 percent of which arise from the endometrium, is
rising. In 2012, there were an estimated 47,000 cases of uterine cancer
and 8,000 deaths. This has increased by more than 140 percent over the
last 10 years, with 65,950 expected new cases and 12,550 expected
deaths in 2022.\1\ While the majority of other cancers have seen
improvement in survival rates, survival rates for endometrial cancer
have worsened annually since 2010. Greater prevalence of key risk
factors, such as obesity and delayed childbearing may be contributing
to the increased incidence of endometrial cancer, but do not explain
the worsening mortality.
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\1\ American Cancer Society. Cancer Facts & Figures 2022. Atlanta:
American Cancer Society; 2022. file:///C:/Users/mjc92028/Downloads/
cancer-facts-and-figures-2012.pdf; American Cancer Society. Cancer
Facts & Figures 2022. Atlanta: American Cancer Society; 2022. https://
www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-
statistics/annual-cancer-facts-and-figures/2022/2022-cancer-facts-and-
figures.pdf].
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Endometrial cancer was previously thought to be more common in
White women, however as of 2007, the incidence of endometrial cancers
in Black women surpassed that of White women and continues to increase
each year.\2\ The majority of endometrial cancers are the result of
obesity, making this one of the only preventable cancers. Additionally,
some of the distressing disparity between lower survival and outcomes
for women who have endometrial cancer is missed opportunities at early
detection. Bleeding, often accompanied by debilitating menstrual pain,
is a symptom that allows early detection, but is sometimes misdiagnosed
as fibroids, uterine cysts, or perimenopause. Unfortunately, fewer than
70 percent of endometrial cancers are now diagnosed while still
confined to the uterus.\3\ Thirty-eight percent (38 percent) of
endometrial cancers are diagnosed at advanced stages in Black women
compared to 25 percent in White women.\4\
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\2\ National Cancer Institute. Surveillance, Epidemiology, and End
Results Program. Cancer Stat Facts: Uterine Cancer. Available at:
https://seer.cancer.gov/statfacts/html/corp.html. Last queried February
13, 2020.
\3\ Memorial Sloan-Kettering Cancer Center, Stages of Uterine
(Endometrial) cancer. https://www.mskcc.org/cancer-care/type/uterine-
endometrial/diagnosis/stages.
\4\ American Cancer Society. Cancer Facts & Figures 2022. Atlanta:
American Cancer Society; 2022. https://www.cancer.org/content/dam/
cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-
and-figures/2022/2022-cancer-facts-and-figures.pdf].
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Additionally, black women are less likely to receive evidenced
based care. Moreover, disparities exist regarding social determinants
of health, access to genetic testing, preventive services, and other
aspects of care for patients with endometrial cancer. These disparities
are creating enormous inequities in outcomes and survivorship in our
health care system, particularly for endometrial cancer. Black women
are more likely to be diagnosed with aggressive subtypes of endometrial
cancer and the mortality and 5-year survival rates are much worse for
black women than white women. The five-year survival rate in black
women is 63 percent compared to an 84 percent 5-year survival rate in
white women.\5\ Black women are two times more likely to die from this
disease compared to White women.\6\
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\5\ American Cancer Society. Cancer Facts & Figures 2022. Atlanta:
American Cancer Society; 2022. https://www.cancer.org/content/dam/
cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-
and-figures/2022/2022-cancer-facts-and-figures.pdf].
\6\ Giaquinto Obstet & Gynecol Feb 2022.
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Disparities in endometrial cancer outcomes may be furthered by
inequities in access to appropriate screening, genetic testing, and
preventive services. Identifying actionable targets to mitigate
disparities in early detection and receipt of timely, guideline-
concordant care remain critical to improving endometrial cancer
outcomes among underserved populations. Research is critically needed
to help understand barriers to care; elucidate differences in tumor
biology; discover new approaches to screening, prevention, and
treatment; and promote wider implementation of known strategies to
facilitate optimal treatments to improve survival for all patients with
endometrial cancer
Therefore, the SGO urges the subcommittee to adopt the following
report language on endometrial cancer in the report accompanying the
Fiscal Year 2023 Labor-HHS-Education appropriations bill.
National Cancer Institute
Endometrial Cancer.--The Committee remains concerned about the
significant disparities in mortality rates for endometrial
cancer that adversely impact Black women. The age-adjusted
mortality rate for Black women with endometrial cancer is much
worse than it is for White women, which is partly attributed to
cancer stage at diagnosis. The Committee urges the NCI to
conduct research activities that will lead to the development
of targeted interventions to improve early diagnosis among
Black women with endometrial cancer and improved access to high
quality care through innovative community-based outreach
methods to increase the enrollment and participation by Black
women in clinical trials. The Committee requests an update on
NCI's activities regarding endometrial cancer in the fiscal
year 2024 Congressional Justification, including progress made
in endometrial cancer early diagnosis, survival rates, and
clinical trial enrollment by ethnicity.
Thank you in advance for your favorable consideration of this
report language request. The SGO believes that pursuit of these
important research objectives will help alleviate disparities in
endometrial cancer outcomes and remove barriers to health equity for
all underserved women diagnosed with this lethal disease.
______
Prepared Statement of the Society of Nuclear Medicine and Molecular
Imaging
Chair Murray, Ranking Member Blunt, and members of the
subcommittee, I am Richard L. Wahl, MD, President of the Society of
Nuclear Medicine and Molecular Imaging and the Elizabeth E.
Mallinckrodt Professor and head of radiology at Washington University
School of Medicine in St. Louis, MO.
The Society of Nuclear Medicine and Molecular Imaging (SNMMI) is a
nonprofit scientific and professional organization that promotes the
science, technology, and practical application of nuclear medicine and
molecular imaging. Research in this field has led to breakthroughs for
diagnosing and treating patients with deadly conditions such as cancer,
heart disease, and Alzheimer's disease. SNMMI strives to be a leader in
unifying, advancing, and optimizing molecular imaging, with the
ultimate goal of improving human health through noninvasive procedures
and therapeutic approaches utilizing internally-administered
radiopharmaceuticals. With over 15,000 members worldwide, SNMMI
represents nuclear medicine and molecular imaging professionals,
including physicians, physicists, radiochemists, pharmacists, and
technologists, all of whom are committed to the advancement of the
field. It is my pleasure to submit this testimony on behalf of SNMMI.
We strongly support at least $49.048 billion for the National
Institutes of Health's base appropriation. This figure represents an
increase of $3.5 billion over FY 2022 plus the release of the 21st
Century Cures funds. SNMMI also supports a proportional increase to the
National Institute of Biomedical Imaging and Bioengineering (NIBIB),
resulting in at least $458.5 million for FY 2023--a $33.6 million
increase over the FY 2022 enacted level. Further, should the Advanced
Research Projects Agency for Health (ARPA-H) or pandemic preparedness
efforts progress, funding should be designated separately from NIH's
base and should supplement, not supplant, investment in basic research.
Through consistent, strong funding for NIH and our National research
infrastructure we can continue to make advancements that will improve
the lives of patients with a wide spectrum of diseases and disorders.
SNMMI is grateful for the subcommittee's past support of NIH and
encourages the subcommittee to continue advancing discovery and
innovation in nuclear medicine and molecular imaging.
Nuclear medicine, in particular, is undergoing a renaissance as a
precision medicine specialty, with new radiopharmaceuticals,
radiopharmaceutical therapies, and instrumentation to elucidate biology
and benefit patients. Federal research funding allows our members,
partners, and stakeholders to improve imaging tools and therapies,
which, in turn, broadens the resources available to address many
challenging conditions. As a physician/clinician-scientist, my work has
been greatly impacted by NIH funding, resulting in 18 patents, over 450
peer-reviewed scientific manuscripts, and several FDA-approved
theranostic (therapy + diagnostics) drugs and devices. I use state-of-
the-art technologies like positron emission tomography (PET) combined
with computer tomography (CT) and other advanced imaging modalities to
improve the diagnosis and treatment of cancer types, including
prostate, breast, neuroendocrine, and pancreatic, while also
researching rare and orphan diseases.
nuclear medicine and molecular imaging: precise and personalized
medicine
Nuclear medicine and molecular imaging procedures are used in a
wide array of diseases and disorders, including cancer, Alzheimer's and
Parkinson's Diseases, and cardiac disease, among others.\1\ Congress's
support of NIH has helped to advance the science and the researchers
who make these discoveries. NIH support is often the foundation of the
newest technologies that go on to help patients. This subcommittee's
continued support of the NIH, especially the National Cancer Institute
(NCI), NIBIB, National Institute on Aging (NIA), National Institute of
Neurological Disorders and Stroke (NINDS), National Institute of Mental
Health (NIMH), and National Heart, Lung, and Blood Institute (NHLBI),
will help scientists address many unmet medical needs. Some of the
advances from the nuclear medicine and molecular imaging community in
detecting and treating cancer and selecting the right patient for the
right therapy are detailed below.
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\1\ Wahl RL, Chareonthaitawee P, Clarke B, Drzezga A, Lindenberg L,
Rahmim A, Thackeray J, Ulaner GA, Weber W, Zukotynski K, Sunderland J.
Mars Shot for Nuclear Medicine, Molecular Imaging, and Molecularly
Targeted Radiopharmaceutical Therapy. J Nucl Med. 2021 Jan;62(1):6-14.
doi: 10.2967/jnumed.120.253450. PMID: 33334911.
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Improved Imaging and Therapy for Cancer using Molecularly Targeted
Radiopharmaceuticals
Major nuclear medicine advances in the fight against prostate
cancer have appeared in the news. In the past year, three cancer-
targeted radioactive imaging agents (Pylarify, Illuccix, and
Locametz) received FDA approval and have entered commercial
distribution for greatly improved detection of prostate cancer. These
radiotracers seek out prostate cancer cells throughout the body,
allowing the active foci of cancer to be seen on a PET/CT scan. This
class of agents targeting prostate specific membrane antigen or PSMA,
can identify cancer months or years ahead of standard imaging such as
CT or MRI, allowing patients to receive appropriate treatment sooner
when it can be more effective. The FDA has also recently approved a
companion targeted radiotherapeutic, Pluvicto\TM\ (\177\Lu-PSMA-617),
for men with late-stage castrate-resistant prostate cancer that had
spread. The PSMA part of the drug makes it act like a guided missile or
geotag to seek out prostate cancer cells. The attached lutetium-177
radioisotope destroys the cancer cells while leaving healthy tissue
intact. Combined, the radiopharmaceutical therapy is in effect a
``smart bomb'' to selectively destroy foci of prostate cancer. The men
treated with \177\Lu-PSMA had a four-month longer median survival than
men receiving best standard of care alone. These results prompted FDA
to label the treatment as a breakthrough therapy which accelerated its
approval time and allow it to reach patients in need faster. None of
this would have been possible without the early support of 13 NIH
grants.\2\
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\2\ Szabo Z, Mena E, Rowe SP, et al. Initial Evaluation of
[(18)F]DCFPyL for Prostate-Specific Membrane Antigen (PSMA)-Targeted
PET Imaging of Prostate Cancer. Mol Imaging Biol. 2015;17:565-574.
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Imaging and therapy molecule pairs, such as those using PSMA
molecules as targeting agents, are often referred to as theranostics, a
rapidly developing area of personalized medicine. If the diagnostic
version of the molecule can find the cancer with a PET scan, then the
same molecule with a therapeutic isotope can be used to attack the
cancer. Further advancements in the theranostics space are anticipated.
This treatment principle is being applied to cancer types for which we
have no or few treatment options, such as pancreatic cancer. An
exciting new class of theranostic molecules are those targeting
fibroblast-activation-protein (FAP).\3\ This protein (FAP) is
overexpressed in many cancer types including breast, pancreas, lung,
kidney, and ovarian. The FAP molecule can be labeled as a diagnostic
agent and then as a therapy. This treatment paradigm gives doctors a
new tool in the fight against cancer. The NCI is currently supporting a
phase 1 clinical trial (NCT04457258) on this promising new agent.
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\3\ Kratochwil C, Flechsig P, Lindner T, Abderrahim L, Altmann A,
Mier W, Adeberg S, Rathke H, Rohrich M, Winter H, Plinkert PK, Marme F,
Lang M, Kauczor HU, Jager D, Debus J, Haberkorn U, Giesel FL. 68Ga-FAPI
PET/CT: Tracer Uptake in 28 Different Kinds of Cancer. J Nucl Med. 2019
Jun;60(6):801-805. doi: 10.2967/jnumed.119.227967. Epub 2019 Apr 6.
PMID: 30954939; PMCID: PMC6581228.
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None of these advances would be possible without the support of
radiochemistry and isotope production research. The next generation of
radioisotopes, alpha emitting therapeutic isotopes, which have much
greater cancer killing power per radioactive decay, are in clinicals
trials and are expected to provide better patient outcomes. Support of
that research is critical.
Quantitative Molecular Imaging
A PET scanner is often thought of as an imaging tool; however, it
is inherently a highly specific measuring tool. Recent advances in PET
technology such as PET/MRI and total-body PET, where the whole body can
be imaged at once, have opened new research possibilities.\4\ To
realize the full potential of these advances, quantitative analysis
will be required to appreciate the sensitivity of the scanner and the
tracers it measures. The NCI has supported the harmonization of PET/CT
scanners through numerous grants including NIH R01CA169072, and for the
last decade, the NCI, through their Cancer Imaging Program has
developed and supported a consortium of academic sites called the
Quantitative Imaging Network performing and advancing quantitative
imaging mostly in support of clinical trials.
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\4\ Meikle SR, Sossi V, Roncali E, Cherry SR, Banati R, Mankoff D,
Jones T, James M, Sutcliffe J, Ouyang J, Petibon Y, Ma C, El Fakhri G,
Surti S, Karp JS, Badawi RD, Yamaya T, Akamatsu G, Schramm G, Rezaei A,
Nuyts J, Fulton R, Kyme A, Lois C, Sari H, Price J, Boellaard R, Jeraj
R, Bailey DL, Eslick E, Willowson KP, Dutta J. Quantitative PET in the
2020s: a roadmap. Phys Med Biol. 2021 Mar 12;66(6):06RM01. doi:
10.1088/1361-6560/abd4f7. PMID: 33339012.
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Imaging of the brain in Alzheimer Disease
About a year ago, the FDA approved an innovative antibody therapy
for Alzheimer's disease which removes amyloid plaque from the brain. At
present, PET scanning using radiotracers that target the amyloid
protein or the abnormal tau protein seen in dementias of the Alzheimer
type have been key to identifying patients who may be suitable
candidates for such clinical trials and these emerging therapies. The
support of the NIH was key to developing these brain imaging agents and
continued NIH support is essential to allow PET to probe the earliest
changes of dementia and to monitor the effects of emerging innovative
therapies. There are now several FDA approved PET imaging agents to
identify patients with amyloid or tau deposition, helping identify how
to best target limited resources to patient groups most likely to
benefit from such therapies. The ability to select patients most likely
to respond to therapy is expected to save tens of billions in
healthcare dollars per year.
Immuno-oncology Imaging
In 1980, the NCI added $13.5M to their budget for new Biological
Response Modifiers, this triggered a search for agents able to modify a
body's response to tumor cells.\5\ That investment spawned the multi-
billion-dollar drug class of immune checkpoint inhibitors (ICI),
starting with the approval of Yervoy (ipilumimab) in 2011. In the U.S.
in 2020, a year severely impacted by the COVID-19 pandemic, sales of
the top three ICI topped $17B. ICIs are generally considered to be safe
and effective treatment options for numerous cancer types including
lung cancers and melanoma, and some people like former U.S. President
Jimmy Carter had a remarkable response to ICI therapy. However, they do
not work in all patients; indeed over half of patients treated with
these agents die of their disease. New radiotracers are in development
to image the immune system in conjunction with a PET or SPECT camera.
Clinical trials with these tools have demonstrated the ability to
predict response to ICI therapy after just one cycle of therapy. Future
studies will aim to pre-select, with imaging, patients who are likely
to respond to immune checkpoint inhibitors thus enabling effective
therapy earlier and eliminating side effects of futile treatments. The
ability to select patients likely to respond to therapy will also save
billions in healthcare dollars.
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\5\ https://www.whatisbiotechnology.org/index.php/timeline/science/
immunotherapy/80.
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Data Science and Workforce
The field of nuclear medicine and molecular imaging is rapidly
expanding with new diagnostic imaging tracers, radiopharmaceutical
therapies (RPT), and technologies. With new diagnostic tracers comes a
need to properly interpret the innovative scans. Artificial
intelligence (AI) algorithms can assist with the tedious components of
image interpretation and even help with quality report generation.
Development of well-credentialed registries of studies to train and
validate such AI algorithms, reflecting diverse sets of patients will
help advance this field. Radiopharmaceuticals therapies (RPTs), like
other oncology therapies, are often studied in and approved for
patients with late-stage disease, for example, after all other
treatments have failed. To harness the full potential of RPTs, use
earlier in the disease course may be advisable. Image and clinical data
registries are needed to capture post-approval information on the use
of RPTs and the patient outcomes to further guide their use. Recent
imaging and therapy FDA approvals in prostate cancer and Alzheimer's
disease, two highly prevalent conditions, require that the highly
specialized field of nuclear medicine and molecular imaging train a
cadre of qualified individuals to diagnose and treat these patients. It
is critical for the NIH to fund and expand training grants so that our
brightest scientists have the skills to develop a sustainable career
pathway. Funding for AI technologies and registries will improve
patient care and outcomes.
summary and conclusion
Robust NIH funding is crucial to advancing our efforts to detect
and treat serious medical conditions. NIH investments help to sustain
both our local and national research institutions across every State in
the Nation. China is advancing rapidly in the high technology medical
space notably in AI. Funding NIH's base program with at least $49.048
billion will help researchers, scientist and physicians retain its
competitive edge.
Thank you for your strong, continued support of NIH, NCI, NIMH,
NIBIB and all the Institutes and Centers working to advance molecular
imaging and radiopharmaceutical therapies to improve the lives of
patients worldwide. On behalf of the Society of Nuclear Medicine and
Molecular Imaging, I urge you to continue your strong support of our
Nation's research and innovation enterprise.
[This statement was submitted by Richard L. Wahl, MD, President,
Society of
Nuclear Medicine and Molecular Imaging.]
______
Prepared Statement of the Spina Bifida Association of America
Shoshana Siegel of Hollywood, Florida
My name is Shoshana Siegel and I'm a 17-year-old, and I was born
with Spina Bifida. I have had seven major surgeries in my life
beginning at the age of 3 months. These surgeries include neurosurgery
to detether my spine and brain surgery due to a related condition
called Chiari Malformation. I am hospitalized 4-6 times a year for on-
going foot infections that are a result of lack of feeling in my legs.
Sometimes children with Spina Bifida are called million-dollar babies;
by the time I was 6 months old my medical costs were half a million
dollars. At the age of 17, between my surgeries, medications and
hospitalizations, we estimate my medical costs are about $3 million. I
am fortunate to have always had private medical insurance through my
mom's employers. I am on-track to graduate high school early and want
to go into medical science as my career. I would like to be a forensic
medical examiner or forensic psychologist. There are instances of
people with Spina Bifida suddenly dying in their 40s with no
explanation. I want to find out why and help us all live longer.
I'm here today to talk about the importance of funding for the
CDC's National Spina Bifida program which funds research and clinics
around the country. At the age that I'm at, I have around seven doctors
who talk to each other openly through our local children's hospital
system. My doctors include wound care specialists, two different
neurologists, a neurosurgeon, an orthopedic surgeon, urologist and a
primary doctor. Also, I see two mental health specialists to help me
navigate life. If all goes well, I can go to these experienced doctors
who know about my condition until I'm 20 years old. After I'm 20, I
will no longer be able to receive care from these experts or be
entitled to this quality care from my experienced and personalized
medical team when I have an infection and need to be hospitalized. At
17 one of my doctors is already starting to transition me to an adult
doctor for my next surgery which will take place before I am 18. This
is not usually how it is done. Typically, a 20-year-old would be solely
responsible for seeking doctors who may have experience with my
condition and needs and it could take years to find the right fit for
my type of Spina Bifida. It is not as easy as googling ``spina bifida
doctor''. Spina Bifida is referred to as a snowflake condition because
no two cases are alike. So for me it would be finding doctors who can
specifically understand my body, my conditions and work with my other
doctors. This is hard to do outside of a medical clinic situation. And
there are not many Spina Bifida medical clinics at adult hospitals.
No one with Spina Bifida should have to fight to have basic medical
care or be penalized because a condition which was once pediatric is
now witnessing its first generation of adults. The medical system must
figure out how to keep pace with a growing, aging and surviving Spina
Bifida population.
Funding the National Spina Bifida Program at $11 million would help
prevent individuals like myself from falling over the care cliff that
happens when a child with Spina Bifida makes the move from a
coordinated pediatric system of care into a fragmented and fractured
system for adult care. Establishing more adult care clinics would help
individuals transition and provide for coordination among doctors so we
could secure employment and enrich our lives.
With the support of my family, I have had excellent medical care my
whole life. This care has allowed me to thrive and excel in life. I
would like to keep my life on track for success without being consumed
by healthcare stress. Thank you for listening to my story and for your
support.
Charlotte Mountz of Harpers Ferry, West Virginia
My name is Charlotte Mountz, and I am 18 years old and I have Spina
Bifida. I am just like any other young woman, with hopes, dreams, and
fears. I love animals and would like to be a zookeeper. Like most other
siblings. My younger brother and I will argue about petty things. But
one of my greatest concerns is the lack of healthcare for adults with
Spina Bifida.
I have grown up going to fantastic pediatric doctors, who know how
to treat people with Spina Bifida. However, Spina Bifida used to be
thought of as a pediatric condition because kids would not live until
adulthood, happily that has changed and we are seeing adults living
into their senior years. Unfortunately, the adult healthcare system
hasn't caught up. That is why I am writing to you today.
The Spina Bifida community experiences what is called a care cliff,
meaning that when a child becomes an adult, they lose their care, and
because of the lack of education about care for adults with Spina
Bifida, there are a lack of providers, both PCPs, and specialist
including, but not limited to, Urologists, Nephrologists, Neurologists,
Neurosurgeons, Orthopedics, and more. Access to these providers is
necessary for people with Spina Bifida to live happy and healthy.
I would like you to support an increase to $11 million dollars for
the National Spina Bifida Program at the CDC. This increase will allow
the NSBP to find more research into care for adults with Spina Bifida
so that we can better educate doctors and lessen the care cliff.
______
Prepared Statement of theAmerican Association of Neuromuscular &
Electrodiagnostic Medicine
fiscal year 2023 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.
--Please provide the National Institutes of Health (NIH) with $49
billion in discretionary funding, an increase of $3.5 billion
over FY 2022. Please also provide proportional increases for
various NIH Institutes and Centers, including the National
Institute of Arthritis and Musculoskeletal and Skin Diseases
(NIAMS), the National Institute of Allergy and Infectious
Diseases (NIAID).
--Please provide distinct, additional funding to support and further
implement the new Advanced Research Projects Agency for Health
(ARPA-H) at NIH to facilitate robust and swift scientific
progress on a variety of neuromuscular conditions.
--Please provide the Centers for Disease Control and Prevention (CDC)
with $11 billion to bolster support for public health programs
that support patient communities, such as the National
Neurologic Conditions Surveillance System.
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, 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 FY 2023 L-HHS
appropriations. First and foremost, thank you for the ongoing
investment in medical research, patient care, and healthcare fraud
prevention programs. Please maintain this investment and provide
further support for FY 2023.
Concerning fraud and abuse, 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, 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 nearly 6,700 members across the
country. Our mission is to improve quality of patient care and advance
the science of neuromuscular (NM) 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.--These tests evaluate 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.
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 FY 2023 appropriations process to recommend greater
community collaboration and to encourage meaningful and timely progress
in the area of EDX fraud and abuse.
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. My
most recent case involved 56 EDX studies, all of which were performed
AFTER the NCS codes were changed in 2013, and every single one of the
reports were deemed so far below the standard of care that none of them
could be considered a reliable representation of the true medical
status of the patients who received those tests. Therefore, none of
those tests should have been billed or reimbursed.
recent examples from dr. peter grant
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 US 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).
A case in Alabama earlier this year recently led to a guilty plea.
According to the Justice Department, the provider conspired with... a
Huntsville-based testing company, to bill insurers millions of dollars
for electro-diagnostic testing that its technicians performed,
regardless of whether there was a medical need for them. Insurers were
then billed using the providers National Provider Identifier (NPI)
number, even where they did not conduct the tests, supervise the tests,
interpret the test results, or have anything to do with the tests
beyond allowing the NPI number to be used for billing purposes. The
fraud identified by the FBI for this case alone is $28 million.
https://www.justice.gov/usao-ndal/pr/huntsville-doctor-charged-
health-care-fraud-conspiracy.
[This statement was submitted by Peter A. Grant, MD, EDX Fraud and
Abuse Consultant for FBI and OIG, AANEM Past-President.]
______
Prepared Statement of Today's Student Coalition
Dear Chairwoman Murray, Ranking Member Blunt, Chairwoman DeLauro,
and Ranking Member Cole:
The Today's Student Coalition (TSC) respectfully requests the
following funding levels within the Fiscal Year (FY) 2023 Labor, Health
and Human Services, Education, and Related Agencies (LHHS)
appropriations bill. The TSC--a collective of 34 cross-cutting higher
education policy, advocacy, and membership organizations--appreciates
the steps that Federal policymakers have taken to support students
through the pandemic. Yet, as our Nation looks to turn the corner and
begin the process of rebuilding our economy for a post-pandemic world,
Federal investments must continue to enhance the capacities of
postsecondary institutions while ensuring student access to the support
necessary for success in higher education.
As you begin to work on FY 2023 appropriations legislation, the TSC
would like to express our support for investments in the key child
care, financial aid/support, and campus mental health programs outlined
below. As our coalition strives to create a system of higher education
that better reflects and supports the needs of today's students, we
believe that investments in these programs represent a chance to not
merely repair the damage caused by the pandemic, but to provide real
educational and economic opportunity to all.
--Emergency Aid Grants: Create a permanent Emergency Aid Grant
program to provide grants to institutions with the explicit
purpose of providing direct student emergency financial aid.
This funding would allow institutions to provide direct
financial assistance to ensure an emergency cost does not
derail a student's ability to complete college, similar to the
assistance provided to students through the Higher Education
Emergency Relief Fund (HEERF).
An emergency financial aid grant can help students cover any
unexpected expenses so these emergencies do not suspend or halt their
education. The Coronavirus Aid, Relief, and Economic Security Act and
the two other subsequent COVID-19 aid packages provided resources for
institutions of higher education to provide financial support in the
form of emergency aid grants for students related to the pandemic. This
aid enabled millions of students to stay in school despite the
increased costs of living through the pandemic in a postsecondary
environment. This authority proved that even a relatively small amount
of financial aid can ensure students have a chance to stay in school.
--Pell Grants: Pell Grants have served as the cornerstone of Federal
financial aid for students from low-income backgrounds,
providing crucial support for roughly 7 million students each
year. We urge Congress to consider a significant increase in
the maximum Pell Grant award in both discretionary and
mandatory funding--continuing the trajectory towards a full
doubling of the maximum award amount in the coming years.
--Child Care Access Means Parents in School: Increase funding to $500
million for the Child Care Access Means Parents in Schools
(CCAMPIS)--the amount needed to provide child care support to
about six 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 campus-based
child care, widely recognized as one of the most important
supports for parenting college students. Increasing CCAMPIS
funding to $500 million would ensure that roughly 100,000 more
parenting college students receive the child care assistance
they need to continue their educational journeys.
--Garrett Lee Smith Memorial Act Campus Suicide Prevention Grant:
Finally, increase the Garrett Lee Smith Campus Suicide
Prevention Grant (GLS CSPG) to $15 million, as this funding did
not receive an increase in the FY 22 package.
In June 2020, data from the CDC showed that more than half of
adults aged 18-24 had at least one adverse mental or behavioral health
symptom, with more than a quarter considering suicide in the past 30
days. The GLS CSPG provides vital funding in colleges' efforts to not
only address the unique needs of students experiencing mental health
challenges or contemplating suicide, but support them in reaching their
academic goals. As the mental health challenges on college campuses
have grown, funding for this important program has become even more
critical.
As you consider programmatic funding levels for FY 2023
appropriations, we urge you to reaffirm Congress's historic, bipartisan
commitment to postsecondary education and to today's students. Thank
you for the consideration of important requests. We look forward to
continued work with you to advance programmatic funding that meets the
needs of our students and the Nation as a whole.
Sincerely.
the today's students coalition
Higher Learning Advocates
Achieving the Dream
Advance Vermont
America Forward
Association of Young Americans
Center for First-generation Student Success
Coalition on Adult Basic Education
Cornell University Student Assembly
Institute for Higher Education Policy
The Jed Foundation
Jobs for the Future
Let's Get Ready
National Association of Student Personnel Administrators
National College Attainment Network
National Skills Coalition
New America Higher Education Program
Student Veterans of America
Swipe Out Hunger
uAspire
University of California Student Association
University Professional and Continuing Education Association
Veterans Education Success
Young Invincibles
______
Prepared Statement of TRIO Talent Search
``You're so smart. It's too bad you can't go to college,'' my dad
sighed, a sad look on his face. I was a freshman in high school when he
said that to me after reviewing my first report card. Up until that
point, I hadn't really thought about college. I had assumed I would
probably go because that's what people did after high school. I felt
shocked by my dad's words; why wouldn't I go? His answer was ``money,''
of course. There was no money for college.
I would soon come to learn that it wasn't just about money. Well-
meaning though they were, my parents, who themselves struggled to
complete high school and worked blue collar jobs, didn't have any idea
of how to help prepare me for college. When it came to grades, it was
simply ``do your best.'' If homework was challenging, my mom jokingly
reminded me she flunked out of algebra. There would be no SAT prep
courses, no private education, no unpaid internships ``for the
experience.'' The time I had for extracurricular activities was shared
with the 25 hours per week I worked at a pizza shop. I was smart, yes,
but that was about all I had in my favor.
While I was in high school, I was informed that I was eligible to
participate in a program called TRIO Talent Search (TTS). My ETS
advisor, Carolyn, provided me with critical guidance I didn't get
anywhere else. I'd had no idea that college applications cost money,
but Carolyn helped me get fee waivers and meet application deadlines,
schedule campus tours, and jump through all the hoops I had never known
existed, and certainly couldn't have figured out on my own. With her
help, I was accepted to the University of New Hampshire Honors Program
with a partial scholarship.
In my first year of college, my dad experienced a significant
mental health crisis that would ultimately lead to his becoming
permanently psychiatrically institutionalized. His illness also
resulted in a loss of income that ultimately led to foreclosure on our
family home during my sophomore year. I took out extra loans to help
with the mortgage, but it simply wasn't enough. These family stressors,
coupled with my socioeconomic background, often made me feel ``other''
than my peers, who seemed so carefree by comparison.
As in high school, I worked through college and was fortunate to
complete my work-study in TTS's administrative office. During that
time, I became familiar with the many services provided by other TRIO
programs. My TRIO supervisors and mentors encouraged me to apply for a
tutor-counselor position at Upward Bound, another TRIO program that
helped low-income, first generation, and ethnic minority students
become competitive for college, in part through their intensive summer
college preparatory program. I spent the summer before my junior year
working as a teaching assistant for classes and providing mentorship,
leadership, and individual tutoring to a fantastically bright and funny
group of high school students. It was the first meaningful job I could
put on my resume--a dramatic departure from Papa Gino's, Subway, and
the Getty gas station off of exit 14.
That wasn't the end of what TRIO had to offer. Right before my
senior year, an TTS mentor asked me if I had applied for TRIO's McNair
Postbaccalaureate Achievement Program. I hadn't because I had never
heard of it. Learning about the program, it seemed too good to be true:
a summer spent living and conducting funded research on campus, a free
GRE prep course, attending research conferences and college tours,
personalized mentorship, graduate school application fee waivers, and
peer support. I could barely contain my excitement. When I was accepted
into the McNair Program, I felt like I had won the lottery, and in a
sense, I really had. The summer I spent with McNair was among the most
memorable of my life. I am certain that without that experience, their
guidance, and the financial assistance, I would not have been
competitive in graduate school application pools saturated with high-
pedigree students with stunning CVs. Good grades and a passion for
learning are simply not enough for success. With their help, I was
accepted to The New School's clinical psychology program with a 75
percent tuition scholarship. I graduated with my BA in psychology summa
cum laude, first in my class, with the honor of being designated a
Dean's Fellow and Class Marshal. I had the privilege of carrying my
college banner in our graduation march, which was one of the proudest
moments of my life.
I went on to earn my MA and PhD in Clinical Psychology. While at
the New School, I served as lab manager for a psychology lab that
studied the psychophysiology of complex trauma. In short, we worked to
understand how people with a lifetime of traumatic exposure (such as
abuse and neglect) experience and manage their emotions. By also
including measures of psychobiology, we were able to better understand
the biological mechanisms underlying their emotional processes. A
highlight of my time in the lab was when I was able to serve as project
coordinator for a 5-year, multi-site NIMH-funded grant study on the
common factors underlying various mental health issues, with a focus on
the role of trauma in diagnosis and emotional processing. In
understanding how people with various mental health concerns process
emotional information, we can develop better, more sensitive treatment
interventions. My dissertation research, which focused on how people
with trauma histories use physical pain to manage emotional distress,
has clinical implications in helping patients reduce self-harming
behavior while still coping with intense negative emotions. My research
also served to de-stigmatize those who engage in self-harm by showing
that many people use benign forms of pain to cope with stress. The main
findings from this research have been presented at the Society for
Affective Science conference, where I won an award for my talk. My
results have since been published in Emotion, a highly regarded
psychology research journal, and have been picked up by two psychology
research digests.
During my graduate school years, I also completed 3 years of
predoctoral training at the Manhattan VA hospital, where I provided
therapy for veterans, including those with PTSD and traumatic brain
injuries. After graduating with my PhD summa cum laude, I completed 2-
year postdoctoral fellowship at NYU Langone's World Trade Center Health
Program for first responders to the 9/11 attacks. During my time there,
I provided therapy and assessment for first responders, and founded a
therapy group for responders with 9/11-related cancers. I also had the
opportunity to co-author an integrative mental health treatment manual
to help providers meet the unique needs of this population.
After completing this training, I accepted a full-time position at
Bellevue Hospital's World Trade Center Health Program for survivors of
the 9/11 attacks, where for 2 years I provided psychotherapy to
survivors with trauma-related disorders and co-morbid medical
conditions, such as cancer. I was given my first faculty appointment as
a Clinical Instructor at NYU School of Medicine and continued to pursue
and publish my own research. My time in both the responder and survivor
World Trade Center Health Programs was humbling and deeply meaningful,
fueling my passion to continue helping people thrive in the wake of
trauma.
In October 2021, I accepted an Associate Clinical Director position
at the Center for Stress, Resilience, and Personal Growth (CSRPG) at
Mount Sinai's Icahn School of Medicine. This also came with a promotion
to Assistant Professor of Psychiatry at the School of Medicine. CSRPG
conducts resilience-building outreach and provides immediately
accessible mental health care to front-line healthcare workers at Mount
Sinai. In my role, I coordinate all day-to-day clinical operations,
conduct outcome research, engage in outreach, provide clinical
supervision, and provide individual psychotherapy and resilience-
building workshops to healthcare workers. It has been an immense
privilege to provide care to those impacted by these chronic traumatic
stressors.
As someone who benefited immensely from the mentorship and guidance
of others, I feel strongly about carving out time away from therapy and
research to give back to students. During my college years, I served as
a youth mentor to a troubled middle school student. During my years as
lab manager, I helped masters- and doctoral-level students develop and
hone their research interests and skills, while also working to build a
sense of community within the lab. As a teaching assistant, I provided
both group and individualized support to master's students working on
their theses. During my time as a postdoctoral fellow, I began
supervising psychology trainees on their clinical cases. At Bellevue, I
continued to stay active the training program, providing supervision
and mentorship to pre-doctoral psychologists in training on both
trauma-related and general outpatient cases. I also led several
didactics and seminars throughout the year on how to understand and
treat complex trauma cases. Now, I supervise a group of 10 social
workers in their clinical work.
The McNair program's naming after an astronaut is apt, because
reaching the exit velocity required to ascend out of the working class
requires force akin to a rocket engine and jet fuel. Obtaining my PhD
(the first in my family) was of course the result of my own hard work--
my ``engine'', so to speak. But TRIO programs provided the jet fuel and
mapped my course, without which I would certainly not be where I am
today. I am privileged now to be doing a meaningful job that I love,
with only a continued upward ascent ahead of me.
In addition to what TRIO has helped me accomplish, I am also
immensely grateful to know that my future children, and their children
in turn, will grow up with the knowledge and resources required to
pursue their own educations and build fulfilling careers. TRIO helps
individuals, yes--and I am one of those lucky ones. But TRIO's impact
goes far beyond the individual, radiating outward to the patients I can
now treat as a result of their assistance, and far into the future. I
am so incredibly grateful for all TRIO has done for me; I would not be
where I am today without these programs.
[This statement was submitted by Ashley Doukas, PhD, Alumna, TRIO
Talent Search and Ronald E. McNair Postbaccalaureate Achievement.]
______
Prepared Statement of TRIO Upward Bound, Math & Science
As a native Missourian, TRIO Upward Bound Math and Science alumna,
former Obama Administration staffer, current TRIO Student Support
Services (SSS) Director at Washington University in St. Louis, and
Jennings City Council Member in St. Louis, MO, I am a true testament to
how #TRIOWorks and shapes lives. I have been and educator and public
servant for over two decades because of my wonderful TRIO experience.
As a high school student in Upward Bound Math and Science, the TRIO
program helped me think about why I wanted to attend college; my
advisor assisted me as I navigated college applications and figuring
out which path to take. Being in the TRIO family, I was encouraged to
not only receive an undergraduate degree from the University of Central
Missouri, but also get a master's degree in Teaching, Social Science
from Webster University, and to pursue a PhD in Educational Management-
Higher Education from Hampton University.
While in the Upward Bound Math and Science program, I was able to
cultivate meaningful friendships and met my best friends at the
University of Northern Iowa where we attended summer classes through
the program. Thanks to Upward Bound Math and Science, most of us
attended college and graduated, and some of us went on to attain
graduate degrees. Four of us from my TRIO cohort became Obama staffers.
One friend who did not immediately attend college, went to and taught
at cosmetology school. Because of that persistent spirit that TRIO
programs instill in students, I am proud to have witnessed this very
friend graduate from the only HBCU in St. Louis this past May 2022. She
had the foundation of TRIO Upward Bound Math & Science. My TRIO cohort
friend group is full of successful career paths: we have an urban
farmer and food justice advocate, a healthcare worker, a CEO of a tech
company, an education advocate, and a defense attorney. We all
attribute our success to the support of the TRIO program and its
advisors along our journeys.
Having the support during my high school years prepared me to
attend college. Without the TRIO program, there would not be a Dr.
Kimberly Morton or the countless other successful TRIO alumni who have
benefited from this wonderful program. As a staffer in the Obama
Administration working at the U.S. Department of Education in the
office of post-secondary in the TRIO department and then as a current
TRIO SSS director, I understand the impact of TRIO on all sides.
From a TRIO Director's lens, how we advise and advocate for our
students throughout their college experience, especially during COVID,
has been difficult because of mental health challenges among our first-
generation, low-income students, and student with disabilities. We are
slowly getting back to a new normal, but I think the long-lasting
impacts of COVID, physically and mentally, will remain for years to
come. We have also provided programming and three courses to assist
students with resources on how to navigate WashU, we collaborate with
campus partners, corporations, non-profits, and researchers to assist
students with thinking about life post-graduation: whether they plan to
go to medical school, law school, pursue other graduate degrees, or if
they plan to join the workforce. We are setting students up with
mentors and internships while providing them with professional
development opportunities so that they can be the best versions of
themselves when they graduate from the institution.
TRIO needs more funding to provide academic resources and increase
staffing so that we can also serve as students' 4-year advisors. My
team takes a holistic approach to advising. As 4-year advisors, we know
that the students are getting the critical support that they need from
first-year to graduation, and beyond. I would like to ask for support
for an increase of $170 million dollars for the FY23 budget because it
is essential that we increase programming and provide academic
resources and services to match student needs.
It has been a true honor for me to understand the TRIO program, on
all levels. Knowing how many lives the program impacts across the
country, it would be great if every institution across the country had
a TRIO program. We must continue and expand this important work of
ensuring that students who are first-generation, low-income, or have
disabilities are seen and heard, have the academic support and
programming, and advocacy to navigate to graduation and beyond. Our
mission is to develop students who go on to have successful careers and
become productive citizens who give back to their communities.
[This statement was submitted by Kimberly Morton, PhD, Alumna, TRIO
Upward Bound, Math & Science.]
______
Prepared Statement of Trust for America's Health
Trust for America's Health (TFAH) is pleased to submit this
testimony on the fiscal year (FY) 2023 Labor, Health and Human
Services, Education, and Related Agencies (LHHS) appropriations bill.
TFAH is a non-profit, non-partisan organization that promotes optimal
health for every person and community. We are funded by philanthropic
organizations and do not accept government funding and support
evidence-based investments that strengthen public health, disease
prevention, and health equity. The pandemic has demonstrated the impact
of chronic underfunding of public health and prevention. Communities
across the country have responded to the pandemic with a depleted
public health infrastructure and workforce, while also responding to
longstanding issues due to increases in chronic diseases, substance
misuse and suicide, health disparities, and environmental health risks.
While Congress has allocated billions of dollars to address COVID-19,
this funding is short-term and largely for use in response to the
pandemic. It follows a familiar but inefficient pattern of underfunding
core public health and then providing significant infusions of
emergency funding when a disaster hits. This short-term funding cannot
build cross-cutting capacity or strengthen the underlying
infrastructure and workforce needed for effective program
implementation and emergency response. Now is the time to fix an
underfunded system so we can ensure every community has the chance for
health and wellbeing. Bold action is needed to strengthen and modernize
public health. TFAH urges Congress to fund the Centers for Disease
Control and Prevention (CDC) at $11 billion for the FY 2023 budget,
including investing in these effective public health programs:
Emergency Preparedness: The COVID-19 response was hindered in part
because the CDC's emergency preparedness funding had been repeatedly
cut, reducing essential training and expert personnel. The Public
Health Emergency Preparedness (PHEP) cooperative agreement has enabled
great strides in our Nation's all-hazards preparedness, but the
pandemic has renewed the urgency in expanded investment in domestic
health security. Yet, PHEP appropriations has been cut significantly
from $918 million in FY2002 to $715 million in FY 2022, or 51 percent
when accounting for inflation. The PHEP cooperative agreement supports
62 State, local, and territorial recipients to develop and strengthen
core public health preparedness capabilities. TFAH recommends at least
$824 million for the PHEP, the level authorized in 2006, to rebuild
capacity to respond to an escalating number of emergencies.
The pandemic has also demonstrated 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
at HHS, supports the readiness of the healthcare delivery system for
emergencies. HPP provides critical funding and technical assistance to
health care coalitions (HCCs) across the country to meet the disaster
healthcare needs of communities, but funding has been cut drastically
from $515 million in FY2003 to $296 million in FY 2022. TFAH recommends
at least $474 million for HPP (PHSSEF), the level authorized in 2006,
to build capacity for the healthcare system to save lives during
disasters.
Healthy Outcomes in Schools: Specialized efforts are needed within
certain age groups as well. 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. A February 2022 study found that these programs resulted in
significant decreases in sexual risk behaviors, violent experiences,
and substance use, as well as improvements in mental health and
reductions in suicidal thoughts and attempts.\1\ During the COVID-19
pandemic, DASH has also leveraged its programs to improve student
connections to mental health services during virtual learning. TFAH
recommends at least $100 million for DASH to expand its work to around
25 percent of all U.S. students and enable them to become healthy
adults.
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\1\ Robin L, Timpe Z, Suarez NA, et al. ``Local Education Agency
Impact on School Environments to Reduce Health Risk Behaviors and
Experiences Among High School Students.'' Journal of Adolescent Health,
February 2022. https://www.sciencedirect.com/science/article/abs/pii/
S1054139X21004006. https://www.liebertpub.com/doi/10.1089/
lgbt.2021.0133.
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Suicide Prevention: The COVID-19 pandemic appears to have
heightened the risk for suicide among certain groups, including girls
aged 12-17 years,\2\ Black youth,\3\ and Latino males.\4\ Concerningly,
the recent CDC Adolescent Behaviors and Experiences Survey also found
that almost 20 percent of youth respondents had seriously considered
attempting suicide, and 9 percent actually attempted suicide.\5\ The
complex nature of suicide requires a comprehensive program that focuses
on disproportionately affected populations, data collection to inform
efforts, and research on risk factors. CDC's work helps identify and
disseminate effective strategies for preventing suicide, from
strengthening access and delivery of suicide care to promoting policies
and programs that reduce risk. CDC programs consist of multisector
partnerships, using data to identify populations of focus and risk and
protective factors, rigorous evaluation efforts, and filling gaps
through complementary strategies and effective communications. TFAH
recommends at least $40 million to expand innovative prevention
activities to at least 25 sites and support State health departments as
they expand comprehensive suicide prevention and syndromic
surveillance.
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\2\ Yard E, Radhakrishnan L, Ballesteros, M, et al. ``Emergency
Department Visits for Suspected Suicide Attempts Among Persons Aged 12-
25 Years Before and During the COVID-19 Pandemic--United States,
January 2019-May 2021.'' Morbidity and Mortality Weekly Report,
70(24);888-894, June 18, 2021. https://www.cdc.gov/mmwr/volumes/70/wr/
mm7024e1.htm.
\3\ Protecting Youth Mental Health: The U.S. Surgeon General's
Advisory. U.S. Surgeon General, December 7, 2021. https://www.hhs.gov/
sites/default/files/surgeon-general-youth-mental-healthadvisory.pdf.
\4\ Ehlman D, Yard E, et al. ``Changes in Suicide Rates--United
States, 2019 and 2020.'' Morbidity and Mortality Weekly Report,
71(8);306-312, February 25, 2022. https://www.cdc.gov/mmwr/volumes/71/
wr/mm7108a5.htm.
\5\ Everett Jones S, Ethier K, et al. ``Mental Health, Suicidality,
and Connectedness Among High School Students During the COVID-19
Pandemic--Adolescent Behaviors and Experiences Survey, United States,
January-June 2021.'' Morbidity and Mortality Weekly Report, 71(3);16-
21, April 1, 2022. https://www.cdc.gov/mmwr/volumes/71/su/
su7103a3.htm?s_cid=su7103a3_w.
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Adverse Childhood Experiences: As the number of adverse childhood
experiences (ACEs) an individual experiences increases, so does the
risk for negative health outcomes such as asthma, diabetes, cancer,
substance use, and suicide in adulthood. CDC estimates that 61 percent
of adults report having experienced at least one ACE in their lifetime,
and the prevention of ACEs could reduce cases of depression in adults
by 44 percent and avoid 1.9 million cases of heart disease.\6\ To help
address these issues, CDC has worked to build the evidence base by
supporting innovative research and evaluation, support surveillance and
data innovation, and identify strategies and build capacity and
awareness to prevent ACEs across the country.\7\ CDC currently supports
six State-level offices, institutes, or departments that are
implementing two or more strategies from its Preventing ACEs guidance
document, including economic assistance to families, efforts to connect
youth to care, and short-term and long-term interventions to reduce
harms.\8\ TFAH recommends at least $15 million to expand surveillance
and innovative ACEs prevention activities to additional States.
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\6\ Justification of Estimates for Appropriations Committees.
Centers for Disease Control and Prevention, 2022. https://www.cdc.gov/
budget/documents/fy2023/FY-2023-CDC-congressional-justification.pdf.
\7\ Adverse Childhood Experiences Prevention Strategy FY2021-
FY2024. In Centers for Disease Control and Prevention, September 2020.
https://www.cdc.gov/injury/pdfs/priority/ACEs-Strategic-
Plan_Final_508.pdf
\8\ Preventing Adverse Childhood Experiences: Data to Action. In
Centers for Disease Control and Prevention, updated August 19, 2021.
https://www.cdc.gov/violenceprevention/aces/
preventingacedatatoaction.html.
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Obesity and Chronic Disease Prevention: The COVID-19 pandemic has
been exacerbated by preventable, chronic health conditions, including
obesity. In 2018, 42.4 percent of adults had obesity.\9\ Even though
obesity accounts for nearly 21 percent of U.S. healthcare spending,
funding for CDC's Division of Nutrition, Physical Activity, and Obesity
(DNPAO) is only equal to about 31 cents per person.\10\ This Division
funds State health departments to protect the health of all Americans
by promoting healthy eating, active living, and obesity prevention in
early care and education facilities, hospitals, schools, worksites and
neighborhoods; building capacity of State health departments and
national organizations to prevent obesity; and conducting research,
surveillance, and evaluation studies. However, 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 to
expand SPAN to all 50 States and territories and build State-level
capacity.
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\9\ State of Obesity 2021. Trust for America's Health. Sept 2021.
https://www.tfah.org/report-details/state-of-obesity-2021/.
\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.
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Additionally, inequities in social and economic conditions facing
people of color and Tribal Nations continue to negatively impact health
outcomes. Among the programs that are effective in reducing racial and
ethnic health disparities are Racial and Ethnic Approaches to Community
Health (REACH) program and Healthy Tribes (previously referred to as
Good Health and Wellness in Indian Country). CDC's REACH program,
within DNPAO, works in 40 communities across the country by supporting
innovative, community-centered approaches to develop and implement
evidence-based and culturally tailored programs that reduce health
disparities. The REACH program will be going through a re-compete in
FY23, and increased funding is needed to meet the overwhelming need for
the program, with over 260 approved but unfunded applications. The
Healthy Tribes program represents CDC's largest investment in American
Indian/Alaska Native health by coordinating three separate programs:
the Good Health and Wellness in Indian Country (GHWIC), Tribal
Epidemiology Centers for Public Health Infrastructure (TECPHI), and
Tribal Practices for Wellness in Indian Country (TPWIC). Healthy Tribes
supports holistic approaches to chronic disease prevention while also
allowing Tribal leaders to direct public health interventions most
effective for their communities. TFAH recommends at least $102.5
million for the total REACH funding line (CDC), with $75.5 million
directed to REACH and $27 million for Healthy Tribes.
Social Determinants of Health: Social determinants of health (SDOH)
such as housing, employment, food security, and education have a major
influence on individual and community health,\11\ contributing to an
estimated 80-90 percent of a person's health outcomes.\12\ Public
health agencies are uniquely situated to build collaborations across
sectors, identify SDOH priorities in communities, and promote cost-
saving interventions that prevent chronic health conditions. Currently
most public health departments lack funding and tools to support such
cross-sector efforts and are limited by disease-specific Federal
funding. Aligned with the President's budget request, TFAH recommends
at least $153 million to further develop CDC's Social Determinants of
Health Program and enable grants to all States and territories. CDC is
also building out the evidence-base for these interventions. In a
review of existing multi-sector partnerships addressing SDOH, 29
organizations projected a savings of $566 million over 20 years from
saved medical costs and increased productivity levels.\13\
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\11\ 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.
\12\ S. Magnan. Social Determinants of Health 101 for Health Care:
Five Plus Five. National Academy of Medicine, Oct 9, 2017. https://
nam.edu/social-determinants-of-health-101-for-health-care-five-plus-
five/.
\13\ CDC, SDOH Evaluation. https://www.cdc.gov/chronicdisease/
programs-impact/sdoh/pdf/GFF-eval-brief-508.pdf.
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Environmental Health: Not all emergencies are caused by infectious
disease. Many occur due to environmental factors. Since CDC's National
Environmental Public Health Tracking Network began in 2002, grantees
have taken over 400 data-driven actions to eliminate risks to the
public. 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 health care savings for every dollar invested,\14\ the
Tracking Network is a cost-effective program that examines and combats
harmful environmental factors. Yet only half the States receive
funding. TFAH recommends at least $54 million for National
Environmental Public Health Tracking Network (CDC), which would enable
15 additional States to join the network.
---------------------------------------------------------------------------
\14\ Return on Investment of Nationwide Health Tracking,
Washington, DC: Public Health Foundation, 2001.
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Age-Friendly Public Health: The COVID-19 outbreak has shown that
collaboration between the public health and aging sectors is vital.
Every day 10,000 Americans turn 65 years of age, yet there have been
limited public health approaches to healthy aging. 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 health care services, coordinating existing multi-
sector efforts, and identifying gap areas, as well as disseminating and
implementing evidence-based policies. Yet as of now, there is no
comprehensive health promotion program for older adults. We recommend
the Committee provide CDC at least $50 million to administer and
evaluate an Age Friendly Public Health program to promote and address
the public health needs of older adults and collaborate with partners
in the aging sector.
[This statement was submitted by J. Nadine Gracia, MD, MSCE,
President & CEO, Trust for America's Health.]
______
Prepared Statement of Tuberculosis Roundtable
Tuberculosis Roundtable (TBR) thanks the esteemed members of the
subcommittee for the opportunity to submit testimony regarding funding
for the U.S. Centers for Disease Control and Prevention (CDC) Division
of Tuberculosis Elimination (DTBE) for fiscal year 2023 (FY23)
appropriations. As organizations tasked with protecting the country
from tuberculosis (TB), TBR members are gravely concerned about the
long-term impacts of the COVID-19 pandemic on future TB incidence.
These impacts include significant delays in diagnosis with increasingly
complicated cases, increases in co-morbidities, the suspension of
targeted testing and treatment of latent TB infection, and the
diversion of economic and human resources to the COVID-19 response. We
respectfully urge you to fund the domestic TB program at CDC at $225
million for FY23. This funding is vital to recoup lost staff time and
resources due to the pandemic, focus on identifying and treating latent
TB, respond to emerging outbreaks and challenges, and strengthen
national, State, and local efforts to detect, treat, and prevent all
forms of TB, including drug-resistant TB.
TB is the world's second most deadly infectious disease, still
ranking ahead of HIV/AIDS, killing 1.5 million people annually.\1\ In
the United States, TB remains a serious problem with all 50 States
continuing to report cases every year. According to CDC, there were an
estimated 7,860 new cases of TB reported in the United States during
2021, with many States reporting increases over 2020 case counts.\2\
The pandemic severely impacted TB case notifications due to TB program
staff being reassigned to work on COVID-19 and patients being unable or
unwilling to seek testing and care under stay-at-home orders and
similar policies. Many of these delayed diagnoses have resulted in a
rebound increase of TB cases nationally, but many remain undiagnosed.
As a direct result, staff and clinicians are seeing much more advanced
and difficult-to-treat TB, and jurisdictions are seeing increases in TB
deaths.
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\1\ World Health Organization. Global tuberculosis report 2021.
https://www.who.int/publications/i/item/9789240037021.
\2\ U.S. Centers for Disease Control and Prevention. U.S. TB
Statistics. Division of TB Elimination. https://www.cdc.gov/tb/
statistics/default.htm.
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Tuberculosis often starts out as a latent, or asymptomatic,
infection which progresses to active and contagious TB disease when the
immune system is challenged. Right now in the U.S., there are up to 13
million individuals with an asymptomatic latent TB infection.\3\ The
diagnosis and treatment of individuals with latent TB, who are at high
risk of progression to active and contagious TB disease, could prevent
an estimated 650,000 to 1,300,000 new cases of active TB as people are
treated before they risk transmitting the disease to their families and
communities.
---------------------------------------------------------------------------
\3\ Ibid.
---------------------------------------------------------------------------
Antibiotic resistant bacteria are an immense threat to the health
of the world, and drug resistant tuberculosis counts for one-third of
all deaths related to antimicrobial resistance globally. Multidrug-
resistant TB (MDR-TB) cases are more difficult and expensive to treat
and threaten to overwhelm underfunded state TB programs.\4\ Between
2005 and 2020, there were 1,664 cases of MDR-TB and 40 cases of
extensively drug-resistant TB (XDR-TB) reported in the United
States.\5\ MDR-TB regimens are longer, often with more expensive
medications that include more extensive side effects and require more
oversight and assistance from healthcare workers. In 2020, CDC
estimated that the cost of treating a single patient with MDR-TB in the
United States averaged $182,000, and the average cost of treating a
patient with XDR-TB was even higher at $568,000, compared with $20,000
to treat a patient with drug-susceptible TB. CDC also estimated that
the costs resulting from all forms of TB in the US totaled over $503
million in 2020. This doesn't begin to address the costs patients and
communities face in the form of lost wages and opportunities during
their treatment.\6\
---------------------------------------------------------------------------
\4\ The Economist. A call to action: It's time to end drug-
resistant tuberculosis. Economist Intelligence Unit. https://
pages.eiu.com/jj-healthcare---2019-healthcare_landing-page-report.html.
\5\ U.S. Centers for Disease Control and Prevention. U.S. TB
Statistics. Division of TB Elimination. https://www.cdc.gov/tb/
statistics/default.htm.
\6\ vi Ibid.
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Global crises are also heavily impacting TB in the U.S. as we
welcome new arrivals from Ukraine, which has one of the highest rates
of MDR-TB in the world.\7\ Testing and treatment is largely falling
upon State and local health departments to complete, even while they
grapple with budget cuts and increasingly overstretched capacity in the
wake of COVID-19. TB program staff have expressed their desire to help
during this humanitarian crisis, but fear that an upcoming wave of
delayed diagnoses from the pandemic coupled with a new population to
care for could prove impossible for them to adequately handle.
---------------------------------------------------------------------------
\7\ World Health Organization. Global tuberculosis report 2021.
https://www.who.int/publications/i/item/9789240037021.
---------------------------------------------------------------------------
CDC's Division of TB Elimination (DTBE) also contains a research
arm that houses the TB Trials Consortium (TBTC). Recent TBTC studies
have led to monumental breakthroughs in shortening and improving
treatment for latent TB and drug-susceptible TB disease, and other
studies focus on such priorities as pediatric safety and dosage.\8\
Despite TBTC's tremendous value and the dire need for the benefits of
its work, funding constraints risk limiting this vital research.
---------------------------------------------------------------------------
\8\ U.S. Centers for Disease Control and Prevention. Tuberculosis
Trials Consortium. Division of TB Elimination. https://www.cdc.gov/tb/
topic/research/tbtc/default.htm.
---------------------------------------------------------------------------
We recognize your commitment to careful consideration of the many
domestic, health, labor, and education programs that require assistance
in FY23, and thank you for your continued leadership. We urge you to
make eliminating TB in the U.S. a top priority for your FY23
appropriations bill by funding CDC's domestic TB program at $225
million to recover from the COVID-19 pandemic, focus on addressing
latent TB, and strengthen national, State and local efforts to
identify, treat, and prevent TB.
______
Prepared Statement of the Tuskegee University College of
Veterinary Medicine
summary of fiscal year 2023 recommendations
_______________________________________________________________________
Health Resources and Services Administration:
--$1.51 billion for the Health Resources and Services Administration
(HRSA) Title VII health professions and Title VIII nursing
workforce development programs.
--$47.42 million for HRSA's Minority Centers of Excellence
--$47.95 million for HRSA's Health Careers Opportunity Program.
--$2 million for HRSA's Minority Faculty Loan Repayment Program.
--$67 million for HRSA's Scholarships for Disadvantaged Students
(SDS).
Centers for Disease Control and Prevention
--$74 million for the Racial and Ethnic Approaches to Community
Health (REACH) Program
National Institutes of Health
--$49 billion for the National Institutes of Health
--$1 billion for the National Institute on Minority Health and
Health Disparities (NIMHD).
-- $300 million for the Research Centers at Minority Institutions
(RCMI)
--$200 million in new, annual research funding dedicated
specifically targeted at enabling historically black health
professions schools to support research that reverses
health status disparities among minority Americans.
--$100 million for NIH's Extramural Research Facilities program
--$50 million to reinvigorate the NIMHD's Research Endowment
Program (REP)
Office of the Secretary
--$72 million for the Office of Minority Health at the Department of
Health and Human Services.
--$5 billion in new funding designated for Historically Black Health
Professions Institutions for the improvement and development of
health care infrastructure.
Department of Education
--$100 million for the Strengthening Historically Black Graduate
Institutions (HBGI) Program.
Community Project Funding/Congressional Directed Spending Request
(HRSA)
--$10 million for the Development of a Center for Food Animal Health,
Food Safety, and Food Defense in TUCVM
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, and distinguished members
of the subcommittee, thank you for the opportunity to submit testimony
and thank you for your leadership in addressing challenges facing the
health workforce, health disparities, and medically underserved
communities. I am Dr. Ruby Perry, Dean and Professor of Veterinary
Radiology at the College of Veterinary Medicine at Tuskegee University.
Since its inception in 1945, Tuskegee University College of Veterinary
Medicine (TUCVM) has educated more than 70 percent of the Nation's
African American veterinarians, and is recognized as the most diverse
of all veterinary schools and colleges in the U.S. The College is the
only veterinary medical professional program located on the campus of a
historically black college or university (HBCU) in the U.S.
The pandemic has pulled back the curtain on what TUCVM and other
Historically Black Graduate Institutions (HBGIs) and HBCUs know and
work towards everyday: the pitfalls and shortcomings of minority
health. Given the recent deluge of media coverage surrounding this
disheartening topic, the country is primed and ready to act in a
meaningful way. Our funding recommendations are robust and we realize
ambitious, however there have rightfully been discussion concerning the
devastating effect of the pandemic on people of color and the need to
address this effect for any future pandemic. To be as clear we can be,
there must be more robust investment on minority health and
disparities. To achieve this we know that it will require the steadfast
leadership of health equity champions. We stand ready to work with you
and your colleagues to facilitate these efforts.
The benefits of increasing diversity in the health professions to
reduce such disparities have been studied at length, are based on
empirical data, and are well understood by the medical community.
Examples of these benefits include:
--Minority physicians are more likely to practice in medically
underserved areas and care for patients regardless of their
ability to pay.
--There is evidence that the intellectual, cultural sensitivity,
competency, and civic development of students is enhanced by
learning in a diverse educational environment.
--A diverse health workforce encourages a greater number of
minorities to enroll in clinical trials designed to alleviate
health disparities.
There is little left to discover or dispute with respect to the
benefits of achieving greater racial and ethnic diversity of the
Nation's health professionals--the attention has once again shifted to
identifying the most effective and sustainable methods to do so. While
there are many national campaigns underway to increase diversity in all
medical and health professions schools particularly during this period
of enrollment growth, it is imperative that we further recognize and
leverage the public value of Historically Black Health Professions
Schools.
The daunting news that Blacks Americans in the U.S. are
disproportionately suffering from COVID-19 unfortunately was not a
tremendous surprise to those of us who regularly monitor and understand
health status disparities in this nation. There are well-known health
status challenges faced daily by Black Americans and minority health
care providers, it also represents a surrogate for the glaring lack of
health infrastructure in medically under-served communities. At TUCVM
and other HBGI institutions, we have long been and remain committed to
addressing these very same disparities in whatever way that we can,
with an eye first and foremost towards the communities with the
greatest need across our country.
Ironically, as a result of their mission focus the financial models
of historically black health professions schools are uniquely
disadvantaged compared to most of their peer institutions. Unlike
subspecialty-oriented, research-intensive institutions--with higher
margin clinical services, an integrated hospital system, substantial
research enterprises, sizeable endowments, and a critical mass of
wealthy donors--these institutions are faced with an unprecedented set
of adverse factors that challenge their financial viability.
Consequently, they are disproportionately dependent on the various
Federal programs that support their core purpose.
Specifically, these programs include: the Title VII Health
Professions Training Programs administered by the Health Resources and
Services Administration (HRSA) of the Department of Health and Human
Services (HHS); the Research Centers at Minority Institutions (RCMI),
the Extramural Research Facilities; the Research Endowment; and Centers
of Excellence programs administered the National Institutes of Health's
National Institute on Minority Health and Health Disparities; and the
Historically Black Graduate Institution (HBGI) program administered by
the Office of Postsecondary Education of the U.S. Department of
Education (DOE).
President Biden recently signed the John Lewis NIMHD Research
Endowment Revitalization Act to revitalize this important initiative,
and it is our expectation that NIMHD will act swiftly to reinvigorate
the research endowment program so minority-serving institutions can
participate in this competitive opportunity to build their research
endowments in a manner consistent with the statutory goal of assisting
them in achieving a research endowment that is comparable to the
endowments of other schools in their health professions discipline. The
NIMHD Research Endowment Program (REP) allows academic institutions to
build research infrastructure and recruit, train, and maintain a
diverse faculty and student body. Robust funding would allow active and
former NIMHD Centers of Excellence to continue their historic focus on
research to close the gap between the burden of illness and premature
mortality experienced more commonly by communities of color, as well as
other medically underserved populations. It would also help improve
access to grants to fund research projects, as well as hire staff and
provide scholarships for students who come from underserved
communities. To ensure successful implementation, we are asking for the
Committee to allocate robust funding to NIMHD for this program.
In addition to the recommendations referenced above, TUCVM has
submitted a community project funding/congressionally directed spending
request for Development of a Center for Food Animal Health, Food
Safety, and Food Defense in TUCVM. We are working with key members of
Congress to advance this request and ensure its success. Development of
a Center for Food Animal Health, Food Safety, and Food Defense in the
TUCVM will position Tuskegee University to play a more vital role in
supporting Alabama`s Agriculture, and to serve its students and farmers
in the black-belt region of the State of Alabama more effectively and
efficiently. The center would enhance TUCVM's ability to facilitate
teaching, research, and service to benefit students, researchers, and
the local community, play a pivotal role in assisting the State of
Alabama`s poultry and fish farmers in adopting modern herd health
practices to not only increase production and profits but also to
ensure safety of poultry and fish products, and initiate new strategies
to encourage DVM students to consider careers in Food Animal
Production, Food Animal practice and research to combat the current
shortage of food animal veterinarians.
Madam Chair, unfortunately, over the past several years funding for
diversity-focused programs has deteriorated in varying degrees. Absent
a monumental overall investment the financial position and academic
viability of historically black health professions schools will
deteriorate rapidly. The front loaded investment in health professions
training programs, graduate programs in biomedical sciences and public,
and safety net providers is more cost effective than absorbing
uncompensated care originating from minority and underserved
communities. Now is the time for targeted investments in historically
black health professions schools to ensure a steady pipeline of
minority healthcare providers, biomedical scientists, veterinarians,
and other health practitioners prepared to support and advance the
delivery of high quality, culturally appropriate, evidence-based health
care. Thank you all again for the opportunity to share the priorities
of the College of Veterinary Medicine at Tuskegee University.
[This statement was submitted by Ruby L. Perry, DVM, PhD,
Diplomate-ACVR, Dean & Professor of Veterinary Radiology, College of
Veterinary Medicine, Tuskegee University.]
______
Prepared Statement of the U.S. Hereditary Angioedema Association
summary of fiscal year 2023 recommendations
_______________________________________________________________________
--Provide the National Institutes of Health (NIH) with at least a
$3.5 billion increase in discretionary funding for FY 2023 to
bring overall agency funding up to a minimum of $49 billion
annually.
--Continue to support committee recommendations that encourage
advancement and expansion of the hereditary angioedema
research portfolio at NIH, as well as research efforts
focused on rare conditions more broadly, through timely.
--Please provide proportional funding increases for NIH's various
Institutes and Centers, most notably given the research
portfolio; the National Institute of Allergy and Infectious
Diseases (NIAID), the National Centers for Advancing
Translational Sciences (NCATS, which houses the Office of
Rare Diseases Research), and the National Heart, Lung, and
Blood Institute (NHLBI)
--Provide the Centers for Disease Control and Prevention (CDC) with
at least a $2.55 billion increase in discretionary funding for
FY23 to bring overall agency funding up to a minimum of $11
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 when they have no other options,
and to prevent from being steered into Federal need-based or
illness-based programs that they would not otherwise qualify
for while properly managing their illness (building on
committee recommendations included in previous fiscal years).
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, 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 FY 2023. First and foremost, thank you for
supporting these programs in FY 2022. It is our hope that this invest
will continue for FY 2023 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 FY 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
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.
For FY 2023, please include committee recommendations thanking
NCATS and NIAID for their leadership on HAE research and asking that
they continue to prioritize emerging activities to advance our
scientific understanding in this area moving forward.
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 in
previous fiscal years and recommend language similar to the draft
committee recommendations below for FY 2023.
recommended report language
centers for medicare and medicaid services
program management
Third-Party Charitable Assistance.--The Committee continues to have
concerns about proliferation of policies that block patient to access
to premium and copay assistance from qualified independent charities,
civic groups, and houses of worship. The continued growth of these
restrictions are expanding beyond marketplace plans and into other
forms of coverage. These policies can be arbitrarily enforced and too
easily leveraged against high-cost rare disease patients with the
greatest need for third-party healthcare safety net programs and
requirements for continued access to therapies to disrupt or delay
essential care. We recognize the administration's stated commitment to
expanding coverage and protecting access for those with complex
healthcare needs and direct CMS to provide its current position on the
third-party payer rule, any potential or planned actions to address
insurance restrictions jeopardizing care for rare disease patients that
utilize charitable assistance, and how these plans align with
overarching CMS efforts to improve coverage and access for the patient
community within 180 days of the enactment of this act.
[This statement was submitted by Anthony J. Castaldo, President and
CEO, U.S. Hereditary Angioedema Association.]
______
Prepared Statement of United for Charitable Assistance
summary of fiscal year 2023 appropriations recommendations
_______________________________________________________________________
--Please continue to support and advance committee recommendations,
as well as related funding and policy initiatives, which
further encourage HHS and the Centers for Medicare and Medicaid
Services (CMS) to address arbitrary barriers that disrupt
patient access to essential charitable assistance in a
meaningful and timely way.
--Please work with your colleagues to encourage HHS to establish a
transparent and patient-centered regulatory system formally
governing charitable assistance programs that is consistent
with the current framework of OIG opinions and ensures all
policymakers and stakeholders have appropriate mechanism to
address challenges and opportunities in this space.
--Please continue to support investment in medical research through
the National Institutes of Health and public health through the
Centers for Disease Control and Prevention to further improve
care and health outcomes for patients facing complex illnesses,
including providing $49 billion for NIH (with distinct and
additional funding for the Advanced Research Projects Agency
for Health) and $11 billion for CDC.
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, and distinguished member
of the subcommittee, thank you for your leadership on health funding
and patient care issues. On behalf of the dozens of patient
organizations comprising United for Charitable Assistance (UCA), we
extend our gratitude and appreciation for the opportunity to provide a
critical, patient-centered perspective as you consider FY 2023
appropriations issues that impact healthcare coverage and patient
access. Most notably, we urge you to continue to support committee
recommendations that feature and emphasize the value and importance of
charitable assistance programs that serve patients with no other
options, while working with your colleagues to maintain and enhance
access to this critical part of the health safety net. Thank you again
for this important opportunity. Please consider UCA a resource on these
issues moving forward.
about united for charitable assistance
We are an ad hoc group of patient community leaders that seek to
protect access to the charitable financial support programs, which
serve as a crucial part of the healthcare safety net for individuals
with rare, chronic, and life-threatening medical conditions. We work
together to educate policymakers so they understand the value, impact,
and vital nature of these programs and ultimately support efforts to
actively defend the lives and livelihoods of those facing serious
conditions that can now be better managed through proper care and
innovative therapies.
about charitable assistance
Over recent years, CMS promulgated rules that effectively allow
private insurance companies to simply deny (or reserve the right to
deny at will) any premium or related healthcare payments made on behalf
of a patient. While these restrictions initially started in marketplace
plans, they have spread to Medigap plans, and various other forms of
coverage. The tangible result of these policies is that patients are
often denied access to mission-driven charitable support from non-
profits, civic groups, and houses of worship. Ultimately, these
restrictions form a back-door to pre-existing condition discrimination
where they are targeted at the most vulnerable populations and patients
lose their coverage due to an inability to utilize available support or
are simply steered towards one of the few remaining plans that has not
implemented restrictions (if they are available in their state). Most
recently, the practice of copay accumulators has taken hold where some
assistance is accepted, but it is never applied to the patient's out-
of-pocket limits, thus rendering the support inconsequential for the
seriously ill.
The situation is particularly dire for patients with rare, chronic,
and life-threatening illness that rely on innovative life-sustaining
medications and who occasionally turn to charities following a job loss
or similar hardship to ensure there is no catastrophic disruption in
access to care. Often times, when properly medicated, these patients
work and contribute to society, and they do not qualify for Medicaid or
similar need-based programs. Further, despite the severity of their
illness, the therapy or medical intervention likely blunts or slows the
progression of their disease meaning they also do not readily qualify
for disability programs. When assistance and access to proper care is
lost, a dangerous situation is created where the dramatic decline in
health rapidly outpaces the patient's ability to transition on to tax-
payer funded safety net programs.
We cannot overlook the fact that many patients in the
aforementioned situation also continue to turn to charitable assistance
during the process of transitioning on to Federal programs as their
illness progresses. The disability waiting periods alone would be
insurmountable for many without charitable assistance. In this regard,
the need for charitable assistance is certainly not mitigated in
Medicare and related programs with some patients utilizing charitable
assistance to make ends meet and cover cost-sharing requirements.
From our experience, there appears to be dangerous misconceptions
that alternatives to charitable assistance exist, that manufacturers
can bridge gaps by voluntarily offering free product as needed, and
that Medicare Part A and hospital emergency rooms can provide a base
solution for those in extreme circumstances. The reality is that no
alternatives exist, there is no comparable or cost-effective substitute
for properly managing an illness, and charitable assistance programs
will need to be an integral part of the healthcare safety net for the
foreseeable future.
When charitable assistance was started decades ago, it was a
benevolent response to real and immediate needs facing the seriously
ill. This assistance was intended to protect those with pre-existing
conditions, prevent medical bankruptcy, and stop involuntary divorce.
These were the same goals shared by the core patient protections
advanced by the Affordable Care Act and supported on a bipartisan basis
in Congress. These patient protections have been an improvement, but
they have not supplanted the need for charitable assistance programs.
contemporary examples of charitable assistance challenges
(patient stories)
Collen.--Colleen is a working mother with two young children from
Connecticut. Her family has health insurance through her husband's
employer. Colleen's family has, relied on a combination of a
manufacture co-pay coupon and non-profit assistance to make ends meet.
Now, the non-profit they relied on no longer offers support, leaving
them with a financial shortfall. To make things worse, their health
insurance plan now refuses to apply their co-pay assistance to their
deductible and out-of-pocket maximum.
Colleen says, ``It is double dipping on the part of the insurance
giants, and it is unconscionable. These co-pay cards are meant to take
the pressure off very sick, very expensive patients. And instead we're
getting hit just as hard, even when we have a co-pay card. We are
seriously considering pulling my daughter from her preschool for next
year because we just can't absorb all these extra health care costs.''
Edith.--Edith is in her 70s and a Medicare recipient from Florida
who was diagnosed with a rare, chronic, and life-threatening illness
about 5 years ago. She takes two targeted therapies to manage her
condition. Recently, the non-profit charity she had relied on stopped
offering co-pay assistance.
Edith says, ``after [I stopped getting copay assistance], every
number that I tried either didn't help with my condition or was out of
funds. It was scary there for a while because I don't have that kind of
money to be able to pay that every month. If I didn't have the
medication I wouldn't be around. I would have passed away.'' Edith's
husband adds, ``without her medications she cannot breathe. Without
these drugs I would lose my wife in a day.''
Irene.--Irene is in her 60s and a former building supervisor from
Virginia. She now receives Medicare due to disability. Irene's cost
sharing requirements outpace her fixed income.
The non-profit organization that had been assisting Irene with her
co-pay recently stopped offering funds. Irene said, ``I was a single
mom and over the years worked very hard to support myself and my son,
but there was never enough to save or put away. My [financial
assistance] grant runs out... in 21 days. I don't have a clue as to
what to do...Basically, I have exhausted all means of other resources
and am mentally preparing myself to die.''
fiscal year 2023 recommendations
Please support committee recommendations like the language outlined
below. Thank you for your time and for your consideration of UCA's
input.
recommended report language
centers for medicare and medicaid services
program management
Third-Party Charitable Assistance.--The Committee continues to have
concerns about proliferation of policies that block patient to access
to premium and copay assistance from qualified independent charities,
civic groups, and houses of worship. The continued growth of these
restrictions are expanding beyond marketplace plans and into other
forms of coverage. These policies can be arbitrarily enforced and too
easily leveraged against high-cost rare disease patients with the
greatest need for third-party healthcare safety net programs and
requirements for continued access to therapies to disrupt or delay
essential care. We recognize the administration's stated commitment to
expanding coverage and protecting access for those with complex
healthcare needs and direct CMS to provide its current position on the
third-party payer rule, any potential or planned actions to address
insurance restrictions jeopardizing care for rare disease patients that
utilize charitable assistance, and how these plans align with
overarching CMS efforts to improve coverage and access for the patient
community within 180 days of the enactment of this act.
______
Prepared Statement of the Urban Indian Health Institute
Members of the Senate Committee on Appropriations--Subcommittee on
Commerce, Labor, Health and Human Services, Education, and Related
Agencies, my name is Abigail Echo-Hawk, and I am an enrolled citizen of
the Pawnee Nation of Oklahoma, currently living in an urban Indian
community in Seattle, Washington. I am Executive Vice President of the
Seattle Indian Health Board (SIHB) and the Director of the Urban Indian
Health Institute (UIHI) where I oversee policy, research, data, and
evaluation initiatives. I request the subcommittee support efforts with
the U.S. Department of Health and Human Services (HHS) to: immediately
transfer the Healthy Native Babies Program (HNBP) to the CDC; advocate
for improved access and reimbursement of doula services; expand grant
edibility from the Administration for Children and Families (ACL) to
Urban Indian Organizations (UIO) to address the Missing and Murdered
Indigenous Women and People (MMIWP) crisis, and; uphold Tribal health
authority status of Tribal Epidemiology Centers (TEC). Targeted
investments are critical for improving the health of American Indian
and Alaska Native (AI/AN) people.
I am an American Indian health researcher with more than 20 years
of experience in both academic and non-profit settings. I participate
in numerous local, State, and Federal efforts to support AI/AN
communities in research, including serving on the Tribal Collaborations
Workgroup for the National Institutes of Health (NIH) All of Us
precision medicine initiative. I serve as the only Native
representative for the NIH Office of AIDs Research Advisory Council. I
am a co-author to four groundbreaking research studies on sexual
violence and Missing and Murdered Indigenous Women and Girls (MMIWG)
where I have called national attention to the institutional barriers in
data collection, reporting, and analysis of demographic data that
perpetuate violence against AI/AN people. I am a member of the National
Academies of Sciences, Engineering, and Medicine (NASEM) Standing
Committee for the Centers for Disease Control and Prevention (CDC)
Center for Preparedness and Response (SCPR). Additionally, I was a
committee member for the NASEM: Framework for Equitable Allocation of
COVID-19 Vaccine.\1\
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\1\ The White House. 2021. Biden-Harris Administration Announces
Initial Actions to Address the Black and Indigenous Maternal Health
Crisis. Retrieved from: https://www.whitehouse.gov/briefing-room/
statements-releases/2021/04/13/fact-sheet-biden-harris-administration-
announces-initial-actions-to-address-the-black-maternal-health-crisis/.
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address barriers to accessing maternal and infant health
In alignment with the Administration's Initial Actions to Address
the Indigenous Maternal Health Crisis \1\ and E.O. 13985: Advancing
Racial Equity and Support for Underserved Communities Through the
Federal Government and the HHS--Equity Action Plan, we request HHS
immediately transfer HNBP to the CDC to respond to the disproportionate
maternal and infant mortality in AI/AN populations.
Since 2003, NIH has operated the HNBP to provide culturally attuned
programming and trainings to address AI/AN infant health disparities.
However, the HNBP's contract expired May 5, 2022. NIH is offering to
support the transition of HNBP to another Federal agency. As the only
public health campaign for AI/AN maternal and infant health, HNBP
aligns with the mission and initiatives of the CDC to reduce rates of
sudden unexplained infant death (SUID) in marginalized communities.
Currently the budget for HNBP is $217,000, under 3-year agreements, and
funds two full-time employees which will have minimal fiscal impact on
the CDC. The HNBP must be moved to the CDC to continue supporting
generations of Native families.
In 2018, SUID rates for AI/ANs were the highest among any racial or
ethnic population with a rate of 212.1 per 100,000 live births for AI/
AN infants which is more than twice the rate for non-Hispanic white
infants of 84.9 per 100,000 live births.\2\ In 2020, non-Hispanic AI/AN
mothers were nearly three times as likely to receive late or no
prenatal care compared to non-Hispanic white mothers \3\ and the
highest rate of infant mortality were among non-Hispanic AI/AN infants
born preterm or low birthweight.\4\ HNBP aims to address the high rates
of SUID through culturally attuned educational materials, training,
outreach events, and stipends awarded to Tribes and Native-led
organizations.
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\2\ CDC. (2021). Sudden Unexpected Infant Death and Sudden Infant
Death Syndrome. Data and Statistics. https://www.cdc.gov/sids/data.htm.
\3\ CDC. (2022). Births: Final Data for 2020. National Vital
Statistics Reports, 70(17). Table 13. https://www.cdc.gov/nchs/data/
nvsr/nvsr70/nvsr70-17.pdf.
\4\ CDC 2020. Infant Mortality Statistics from the 2018 Period
Linked Birth/Infant Death Data Set. National Vital Statistics Reports.
Table 2.
https://www.cdc.gov/nchs/data/nvsr/nvsr69/NVSR-69-7-508.pdf.
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transfer the healthy native babies program
To support maternal and infant health, I also request HHS evaluate
and consider reimbursement services for doulas. The Centers for
Medicaid and Medicare Services (CMS) must increase grant flexibility,
provide enhanced technical assistance, and ensure more States fully
reimburse doulas and midwives at financially sustainable levels. For
Native women, doulas decrease negative childbirth experiences, and
support their access to health care providers who understand the unique
cultural, social, and economic burden mothers face. In the 2022
Legislative session, Washington state passed legislation to credential
doulas and midwives. A competent credentialing system for doulas allows
us to continue practicing traditional ways of knowing with their care
and expertise being vital to improve health outcomes of our people.
These trends illuminate the need for greater investments and
targeted approaches for addressing maternal and infant health for AI/AN
populations. UIOs and Native-led organizations must be included in
grant eligibility by HHS agencies to continue providing maternal and
infant health services related to disease prevention, health promotion,
screen for maternal depression, service delivery, research, and
healthcare professional education for providers interacting with AI/AN
communities.
support public safety for missing and murdered indigenous women and
people
In support of Executive Order (E.O)14053: Improving Public Safety
and Criminal Justice for Native Americans and Addressing the Crisis of
Missing or Murdered Indigenous People and the U.S. Government
Accountability Office (GAO) report titled Missing or Murdered
Indigenous Women: New Efforts are Underway but Opportunities Exist to
Improve the Federal Response,\5\ we urge HHS and ACF to expand grant
eligibility of the Family Violence Prevention and Services (FVPS) to
include UIOs. UIOs are on the front lines of responding to violence,
sexual abuse, and human trafficking experienced by urban AI/AN
populations. UIOs must be included in FVPS grant eligibility to support
our programs, services, and initiatives to support AI/AN individuals,
families, and communities affected by violence.
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\5\ U.S. Government Accountability Office (November 2021). Missing
or Murdered Indigenous Women:
New Efforts Are Underway but Opportunities Exist to Improve the
Federal Response Retrieved from: https://www.gao.gov/products/gao-22-
104045.
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I am grateful for the HHS recently holding a joint consultation in
partnership with the Department of Justice and Department of Interior
related to the GAO report on MMIWG. I request HHS utilize a multi-
pronged approach from all HHS agencies including NIH, Indian Health
Service (IHS), and CDC to support research and gender-based violence
services to serve survivors, victims, community-based organizations,
and families affected MMIWP.
To inform HHS' MMIWP efforts, UIHI has released several recent
reports identifying gaps in data collection methods and developing
culturally attuned frameworks for gender-based violence programming. In
2021, UIHI released Sacred: Womxn of Resilience,\6\ the report
documented the COVID-19 impact on Native femme-identifying survivors of
sexual violence. The report also highlighted the critical need to build
relationships between law enforcement, providers, and survivors to
provide culturally responsive intervention and prevention services. The
report also stresses that gender-based violence prevention,
programming, and evaluation be led by experts from the Native community
to adequately offer culturally responsive services to individuals
impacted by MMIWP.
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\6\ Urban Indian Health Institute. (September 2020). Sacred: Womxn
of Resilience. www.uihi.org/download/supporting-the-sacred-womxn-of-
resilience/?wpdmdl=18261&refresh=6217b40a4ce3e1645720586.
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In 2022, UIHI released Service as Ceremony: A Journey Toward
Healing \7\ a national study interviewing gender-based violence direct
service providers. The report reveals offering culturally attuned
holistic programming to address physical, psychological, and spiritual
impacts for clients were essential to building resiliency and
responding to the spectrum of gender-based violence experienced by
individuals impacted by MMIWP. This report makes recommendations to
fund TECs conducting research, assure gender-based violence grant
funding is non-competitive, multi-year, flexible, and include UIO in
grant carve outs.
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\7\ Urban Indian Health Institute. (February 17, 2022). Service as
Ceremony: A Journey Toward Healing. www.uihi.org/download/service-as-
ceremony-a-journey-toward-healing/?wpdmdl=19563
&refresh=621d39d2458ae1646082514XX.
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To support gender-based violence services offered to AI/AN
survivors, victims, and families, UIHI provides several encompassing
recommendations HHS can implement including providing flexible grants
to community-based organizations, investing in research conducted by
TECs, investing in educational campaigns related to violence
intervention and prevention, and investing in human services to support
social determinants of health impacting an individual's safety
including housing, education, and access to health services.
honor public health authority status of tribal epidemiology centers
I recently provided feedback for the GAO report Tribal Epidemiology
Centers: HHS Actions Needed to Enhance Data Access \8\ highlighting
necessary actions to be taken by HHS to improve TEC's access to Federal
public health data. Despite HHS being required to share public health
data with TECs, TECs continue to experience barriers to accessing data,
thus limiting available information on AI/AN populations. The report
recommends HHS: develop a policy clarifying HHS data available to TECs
as required by Federal law; encourage the CDC Director develop written
guidance for TECs on how to request data as well as document agency
procedures on reviewing TECs data requests; encourage the IHS Director
to develop written guidance for TECs on how to request data, and;
encourage the IHS Director to develop and document agency procedures on
reviewing TEC data requests.
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\8\ U.S. Government Accountability (March 2022). Tribal
Epidemiology Centers: HHS Actions Needed to Enhance Data Access.
Retrieved from: https://www.gao.gov/products/gao-22-
104698#::text=Also%2C%20
GAO%20was%20asked%20to,documentation%20of%20TECs'%20data
%20requests.
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Additionally, several HHS agencies, including the CDC and IHS, have
failed to recognize the public health authority of TECs and thereby
ignore or reject data requests by TECs. UIHI has been denied access to
national and regional data, data collected through the National
Notifiable Disease Surveillance System (NNDSS), National Violent Death
Reporting System (NVDRS), and other COVID-19 surveillance data. Failure
to grant TECs data access perpetuates systemic health inequities in AI/
AN communities by limiting the public health surveillance and
epidemiological data collected by governmental agencies.
All HHS agencies must ensure data sharing requirements with TECs
uphold Congressional intent and recommendations by the GAO report. TECs
inform decision-making by Tribes, Tribal organizations, UIOs,
government agencies, and public health agencies to ensure equitable
distribution of resources and to inform robust policies, planning, and
programming to address social determinants of health experienced in
Indian Country.
[This statement was submitted by Abigail Echo-Hawk, MA,Director,
Urban Indian Health Institute.]
______
Prepared Statement of VentureWell
On behalf of VentureWell, we thank the subcommittee for its support
of the National Institutes of Health (NIH). VentureWell strongly
believes that robust investments in scientific research are crucial for
sustained economic growth and technological innovation. VentureWell
encourages the subcommittee to provide at least $49 billion for the NIH
base budget in FY 2023, with any additional funding for the new
Advanced Research Projects Agency for Health (ARPA-H) to supplement,
not supplant, core investments in the NIH base budget. VentureWell also
asks the subcommittee to encourage increased support at NIH for
programs like the Rapid Acceleration of Diagnostics (RADx) initiative
that focus on commercialization and innovation.
about venturewell
VentureWell is a global nonprofit organization with more than two
decades of experience supporting early-stage science and technology
innovators, helping them to bring inventions or discoveries from lab to
market in order to offer innovative technological solutions to pressing
challenges. VentureWell's training programs are distinguished by the
quality of instruction and mentorship provided by our staff and large
network of experts in areas such as technology commercialization,
intellectual property, global supply chains, and financing. VentureWell
is an active partner in the U.S. innovation ecosystem, providing
grants, training, and support to early-stage science and technology
innovators, startups, and entrepreneurship educators. Our programming
has helped bring groundbreaking technological advancements to millions
of people across the U.S. and in more than 90 countries, in fields
including biotechnology, healthcare, information and communications
technology, sustainable energy and materials, and other sectors
critical to people and the planet.
Since our founding more than 26 years ago, VentureWell has
supported over 12,000 innovators, resulting in more than 2,700 ventures
that have raised over $2.2 billion in follow on investment. Ongoing
programs include entrepreneurship grants and training programs focused
on innovation and commercialization; faculty grants to researchers and
instructors focused on integrating innovation and entrepreneurship
teaching in higher education; and competitive national award
competitions focused on innovation, design, and commercialization. A
core component of our work is partnering with Federal agencies to
accelerate the impact and scale of innovation programs and initiatives.
Among other NIH collaborations, VentureWell has notably worked to
launch the agency's I-Corps program since 2014, the Design by
Biomedical Undergraduate Teams (DEBUT) competition with the National
Institute of Biomedical Imaging and Bioengineering (NIBIB) since 2016,
the NIH Technology Accelerator Challenge (NTAC) for sickle cell
diagnostics (2019) and maternal health (2022), and the Rapid
Acceleration of Diagnostics (RADx) initiative to speed innovation in
the development, commercialization, and implementation of technologies
for COVID-19 testing starting in 2020.
from invention to product: the commercialization ecosystem
Innovation and entrepreneurship in science and technology is a key
driver of economic development in the United States. Our country's
ability to transform breakthroughs from basic research into consumer
products and scalable businesses has led to enormous benefits for
society, including new cures for diseases, better communication and
information sharing technology, and safer food and transportation. In
recent years, U.S. leadership in science and technology on the world
stage--and by extension our National security and global economic
leadership--has been threatened as other countries increase their own
investments in this area. Our country can address this challenge by
increasing Federal investments in agencies like NIH and programs that
close key gaps in the pipeline for developing and commercializing new
technologies. The U.S. commercialization ecosystem would benefit from
comprehensive support for early-stage researchers to translate their
ideas into products, to grow the pipeline of entrepreneurial talent in
the U.S., and from the reduction of barriers that block the progress of
individuals or organizations to commercializing innovations.\1\
VentureWell partners with Federal agencies to address these needs by
supporting the ventures, individuals, and ecosystems that drive
American innovation.
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\1\ https://www.dayoneproject.org/ideas/closing-critical-gaps.
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opportunities for innovation at the national institutes of health
Biological sciences and clinical medicine are key areas of research
and development linked to entrepreneurial activity. New therapeutics,
medical devices, and other health-related technologies have enormously
high potential benefits yet relatively long and complex development
timelines, making support for venture development in this sector a
crucial component of bringing products to market quickly and
efficiently. Given its position as the top funder for biomedical
research in the U.S., NIH plays a major role in fostering more
effective and efficient translation of basic scientific discoveries
into treatments and therapeutics. Not only does NIH support the
fundamental research that underpins most clinical and commercial
advances in biomedical research, the agency also funds a portfolio of
venture acceleration programs specifically aimed at encouraging
entrepreneurship and innovation at all career stages. Our organization
has played a key role in NIH's I-Corps program, an intensive start-up
training program for academic researchers and students that teaches
participants how to evaluate commercialization potential and develop a
business model. Our organization also administers the Design by
Biomedical Undergraduate Teams (DEBUT) challenge in partnership with
the National Institute of Biomedical Imaging and Bioengineering
(NIBIB). This competition challenges teams of undergraduate students to
solve real-world problems in health care by applying their analytical
and design skills towards the development of a new product. VentureWell
also partners with the National Institute of Biomedical Imaging and
Bioengineering (NIBIB) to help improve maternal health around the world
through the NIH Technology Accelerator Challenge for Maternal Health
(NTAC: Maternal Health). This challenge seeks to spur and reward the
development of prototypes for low-cost, point-of-care molecular,
cellular, and/or metabolic sensing and diagnostic technologies to guide
rapid clinical decision-making, improve patient outcomes, and
ultimately prevent maternal morbidity and mortality. VentureWell thanks
the subcommittee for its ongoing support for these programs and
encourages continued strong funding for these initiatives at NIH in FY
2023.
To truly capitalize on all the talent and potential in the U.S.
entrepreneurial workforce, we believe that diversity, equity, and
inclusion must be reflected throughout all Federal efforts in this
area. We must remove systemic barriers that limit the participation of
underrepresented groups in innovation and entrepreneurial activities
and ensure that pathways for commercialization are open to all
innovators regardless of their racial, ethnic, gender, or socioeconomic
background. VentureWell is committed to supporting a diverse workforce
of researchers, faculty, entrepreneurs, and innovators whose voices and
ventures have been underestimated and under-resourced, and encourages
the subcommittee to ensure that equity is reflected throughout all
innovation programs funded by NIH.
diversity, equity, and inclusion in innovation & entrepreneurship
In 2019, VentureWell ccommissioned a national study around
broadening participation in the higher education innovation and
entrepreneurship ecosystem. Informed by this study, our Advancing
Equity: Dynamic Strategies for Authentic Engagement in Innovation and
Entrepreneurship report presents a blueprint for university-based
entrepreneurship centers that strive to increase diversity, equity, and
inclusion (DEI) practices. We co-developed with researchers, faculty,
and center directors, a series of resources for advancing the DEI tools
and best practices specific to science and technology commercialization
and training, and our report Advancing Equity: Navigating New Terrain,
demonstrates ways to apply this blueprint at higher education
institutions around the country. We continue to provide resources to
academic, industry, and network partners as part of our Advancing
Equity webinar series. VentureWell fully supports NIH's efforts to
broadening participation in biomedical research supports the NIH UNITE
initiative to address structural racism and promote racial equity and
inclusion at NIH and within the larger biomedical research enterprise.
the radx model: covid and beyond
The RADx Initiative was officially launched in April 2020 with a
$500 million investment through emergency appropriations from Congress
to speed innovation in the development, commercialization, and
implementation of technologies for COVID-19 testing. RADx leveraged the
infrastructure developed through NIBIB's Point-of-Care Technologies
Research Network (POCTRN)--created by NIH in 2007--to quickly bring
COVID-19 testing technologies to market. Previous investments made by
Congress in this innovation infrastructure at NIH were critical to
RADx's ability to bring new diagnostic technologies to the American
people in record time.
VentureWell has worked alongside NIH on the RADx program since its
inception, providing infrastructure support and coordination services,
clinical evaluation services through contract research organizations,
and performing important administrative roles including government
compliance, security testing on platforms, payment processing, sub-
contracting to third parties, and procurement standards. In 2 years,
VentureWell engaged 869 experts, contracted with 337 vendors/companies/
service providers, issued 201 software licenses, funded 140 RADx
projects, and have received 44 FDA authorizations. RADx-supported
companies have increased COVID-19 testing capacity across the United
States by 1.9 billion tests and condensed the typical multi-year tech
commercialization process into approximately 6 months. Tests developed
through RADx, with support from VentureWell, have enabled the U.S. to
begin to recover from the public health and economic devastation
brought on by COVID-19. VentureWell has continued to support NIH
through the RADx initiative by providing online educational tools like
the whentotest.org Covid-19 calculator, supporting the analysis of test
performance through variant modeling and analytical testing, and
working in close collaboration with the Food and Drug Administration
(FDA) to establish the Independent Test Assessment Program (ITAP) in
order to accelerate regulatory review and availability of high-quality,
accurate, and reliable over-the-counter COVID-19 tests.
We believe that the RADx approach--a nimble and systematic but
aggressive strategy--should be applied in the development and
evaluation of diagnostic tools in other therapeutic areas where
innovative diagnostics and surveillance technologies are much needed.
This includes applications ranging from HIV to maternal health. To
prepare for future pandemics and diseases that threaten the public
health of the population, we must continue to promote the use of
innovative methods with a proven record of success to accelerate the
development, commercialization, and implementation of point of care
tests for COVID-19, new pathogens, and more. VentureWell encourages the
subcommittee to direct NIH to continue support for the RADx program in
FY 2023. Sustained investments in RADx will enable NIH--and our country
as a whole--to be prepared for future public health threats and will
help the United States to maintain its historic role as a global leader
in biomedical science and technology.
VentureWell thanks the subcommittee for its ongoing work in
advancing biomedical research in the United States and ensuring that
our country remains a world leader in science and technology. We urge
the subcommittee to continue its commitment to research and development
by providing strong funding for NIH in FY 2023, including increased
support for programs like RADx that focus on commercialization and
innovation. Thank you for your consideration of VentureWell's
testimony. For more information about our organization, please see
https://venturewell.org/.
[This statement was submitted by Phil Weilerstein, President and
Chief Executive Officer, VentureWell.]
______
Prepared Statement of the wAIHA Warriors
summary of fiscal year 2023 recommendations
_______________________________________________________________________
--Please provide the National Institutes of Health (NIH) with $49
billion to facilitate continued growth in rare disease research
activities.
--Please provide proportional increases for the National Institute
of Allergy and Infectious Diseases (NIAID), the National
Heart, Lung, and Blood Institute (NHLBI), and the National
Center for Advancing Translational Sciences (NCATS) to
facilitate establishment and advancement of a wAIHA
portfolio.
--Please provide a separate, meaningful increase to advance and
adequately support the emerging Advanced Research Projects
Agency for Health (ARPA-H).
--Please provide the Centers for Disease Control and Prevention (CDC)
with $11 billion to support public health efforts.
--Please systematically increase funding for the Chronic Disease
Center at CDC to bring the agencies funding up to $3.75
billion annually, and please support $6 million in funding
for the line-item CDC Chronic Disease Education and
Awareness (CDEA) program to ensure additional cooperative
agreements are available for stakeholders.
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, and distinguished members
of the subcommittee, thank you for the opportunity to present the views
of the wAIHA Warriors and the community of individuals impacted by Warm
Autoimmune Hemolytic Anemia (wAIHA). First, thank you for the
meaningful investment in medical research and public health programs
through the FY 2022 omnibus appropriations package. For FY 2023, we
join other rare disease organizations and the broader patient community
in asking for a sustained and meaningful investment in NIIH, CDC, and
related Federal programs. We also deeply appreciate this opportunity to
raise awareness of wAIHA and share the patient experience. Please
consider us a resource moving forward. Thank you again.
about warm autoimmune hemolytic anemia (waiha)
wAIHA is a rare autoimmune disorder in which the immune system
creates antibodies that destroy healthy red blood cells. The condition
is progressive, potentially fatal, and difficult to address at later
stages. It can be idiopathic or occur secondary to another condition.
wAIHA can impact anyone and affects men and women equally, though it
most commonly affects individuals over 50. Research has led to
scientific advancements and potential therapies, but at this time
treatment options are extremely limited and consist of (1) steroids and
transfusions, (2) immunosuppression and chimeric anti CD20 antibodies,
and (3) removal of the spleen. The condition is associated with
significant morbidity and mortality, and less than 50 percent of
patients remain in remission following front-line treatment.
about the waiha warriors
The wAIHA Warriors are a patient-driven grassroots organization
focused on supporting the community of individuals impacted by wAIHA.
Collectively, we use our stories and experiences to raise awareness,
advance research, and improve healthcare. We also promote fellowship
and engagement among community members to overcome the isolation of
wAIHA and work to educate and mobilize healthcare providers to better
address this rare disease experience.
patient experience; eric, new york
In February 2011 I had a bad flu just before Super Bowl weekend. I
was well enough to attend a Super Bowl party but remember not feeling
myself. A few weeks later I had my regular annual physical with my
internist. We were away celebrating a friend's 50th birthday, sitting
at the pool, when my internist called and told me that my blood work
was totally out of kilter (he used the term ``pancytopenia''). My wife,
Liz, who is a pediatrician, was nervous and just like when our kids
were little, I only got nervous when she got nervous. I was very lucky
that one of my closest friends is a Hematologist/Oncologist. The next
day I went to see him, he set me up for all sorts of scans and bone
marrow biopsies and we were off trying to figure out what it was and
was not.
Over the next few months he became confident that I did not have
any sort of acute blood cancer. I still did not feel myself (I was
tired, not hungry, not sleeping well, and not in a good mood). Most the
blood tests became normal except for the hemaglobin/hematocrit. My
spleen was very large. My friend thought I had AIHA (but my Coombs
tests, which are typically what seal the AIHA diagnosis) were negative.
Over the summer, I had one Coombs that was barely positive. In August
2011, my hemoglobin was going down and I had a blood transfusion.
In September 2011, my friend/hematologist wanted me to get another
opinion, so he referred me to another hematologist who is more of a
``benign hematologist'' as they are known--don't typically treat blood
cancers. She confirmed the diagnosis of AIHA. She began me on
prednisone and I felt a little better.
My friend/hematologist thought that if I had a splenectomy (which
was thought to be the primary treatment option back then) I might be
``cured'' and I would not have to be on chronic prednisone the rest of
my life. I had the surgery In February 2012. It was a very difficult
few days in the hospital followed by about 3 weeks of recovery at home.
But after that, I felt pretty good. I was on very very low dose of
prednisone (less than 5mg per day) and that lasted for a few years.
In June 2015, I got sick again (tired, peeing a lot, not sleeping,
could feel my pulse in my temples).The goal then became to find
something that was not as harmful as prednisone that could control the
hemolysis and my hemaglobin levels. Over the next couple of years, I
had a couple of courses of Rituximab, and also tried courses of
Azathioprine and Danazol. When I was hemolyzing and my hemaglobin was
dropping, I needed to increase the prednisone.
I made an appointment to see a leading physician, Dr. Kuter, in
December 2017. He gave me (and my hematologist) the ``state of the
art'' on the treatments available. The next time I had a deep crash of
my hemaglobin, in June 2018, we tried one. Shots of Procrit. Those
worked quickly and my hemaglobin went as high as it had been since all
this started in 2011.
By the middle of 2019, I had another crash and it was time to see
what else was out there. I connected with Dr. Irina Murackhovskaya at
Einstein/Montefiore who was doing some clinical trials for AIHA drugs.
I had to get my hemaglobin below 10 to participate and I needed a
positive Coombs test, and we managed that closely. In October 2019 I
started the trial and I chose this trial because it was open and I
would definitely get the drug (not a placebo).
In early December 2020, I did not feel well. My legs felt like lead
weights. Over the next few weeks my prednisone started dropping pretty
quickly. By Christmas week, I was feeling as sick as I had felt in a
long time. My Hgb dropped below 8, I had a blood transfusion and I
increased my prednisone to 60mg per day (the same as the highest I ever
had in the past).
During 2021, I felt well. Still working at home. Things started
opening up. We started to get out more. That helped a lot. I continued
to wean down the prednisone and by the late Fall was on about 7.5 mg
per day. My Hgb was pretty stable. My other hemolysis markers were
better and stable too.
In early March, my Hgb was 14.2 (highest I can remember and
``normal'' range on some ranges). All my other hemolysis markers were
as good as they had ever been. Had to have another round of primary
Evusheld as the CDC changed the recommendation on how much to get for
primary round.
I feel good now. Started back to work 3 days a week towards end of
March. Did a quick 3 weeks of Breakthrough M2 diet program and went
from about 193 lbs. to about 178 lbs. (15 lbs.) in 3 weeks. Things are
starting to get back to (post COVID) normal. In April, my Hgb went back
down to low 13s but still holding strong as are the other hemolysis
markers. Fingers crossed that they will stay good. With Passover,
gained back about 5 lbs. but still feeling pretty good.
[This statement was submitted by Karen Jones, Executive Director,
wAIHA
Warriors.]
______
Prepared Statement of the West Virginia Head Start Association
Dear Chairman Murray, Ranking Member Blunt, and Members of the
subcommittee,
On behalf of the Head Start community nationwide, thank you for
this opportunity to share views and perspectives on Fiscal Year 2023
(FY23) funding for Head Start. For 5 years, I have had the distinct
pleasure of serving as the executive director of the West Virginia Head
Start Association representing 21 programs from the Cheat River to the
coal fields. Every day, we diligently work to build early learners and
support West Virginia families facing financial hardships and
generational poverty who are too often stung by addiction, depression,
and economic uncertainty.
While I am extremely proud of how our programs in the Mountain
State have weathered a global pandemic, COVID-19 has laid bare a crisis
that Head Start program managers had previously been able to sweep
under the rug or gloss over: our neglected and underinvested workforce.
In the shadow of conflicting and confusing COVID-19 protocols and the
rising impact of inflation, Head Start staff are struggling to meet the
needs of West Virginia's most vulnerable children and their families
and we need your help. We urge you to take immediate action to help
address the spiraling labor situation crippling Head Start and Early
Head Start.
At the present time, we have 143 staff openings in West Virginia--
significantly higher than normal for this point in the program year.
Most of those openings are due to the staffs' ability to easily find
higher wages elsewhere. Local boards of education, which pay more, are
regularly recruiting our staff for other positions--bus drivers,
teachers' aides, and lead teachers--in the state pre-K or K-12 public
school system. Private sector employers are also drawing away both
potential and current employees. For example, Sheetz currently pays $15
per hour with a $3,000 sign-on bonus and Wal-Mart's starting wage is
also $15 per hour.
In West Virginia, the minimum wage is $8.75. That is the typical
starting wage for Head Start staff. Full-time employment at $8.75 per
hour is well below the Federal poverty line, which means many Head
Start staff are earning an income so low that their children qualify
for Head Start services. With this in mind, it is not surprising
workers are choosing other options that better support the wellbeing of
their own families.
What is true for West Virginia is also true for Head Start programs
nationwide. At a recent National Head Start Association conference,
more than 900 staff were surveyed on current workforce conditions. The
results were startling: an average of 35 percent of classrooms have
been closed this school year and 90 percent of programs had to close a
classroom permanently or temporarily due to staffing considerations. Of
the programs surveyed, 30 percent was the average number of open and
unfilled job slots at local Head Start programs. Closures translate to
thousands of children left at home with an older sibling, a relative,
or a neighbor while a mom or dad goes to work or school. For wage-based
employees, missing one day can be a huge setback-often only a day's pay
away from homelessness or the ability to purchase groceries. For
children, closed or suspended Head Start classrooms translate into
critical learning loss in educational basics and missed critical social
skills-skills that COVID-19 has already weakened for so many young
children.
Conditions are dire. In the survey comments, one respondent wrote:
``We are struggling because we can't get people to apply for teacher
positions. We can't compete with pay with our local school districts.
Children's behaviors have escalated so much and we need so much
behavioral support. Staff are getting punched, bit, and kicked by
students on a daily basis. We NEED to take care of our staff. Staff are
doing two and three jobs to cover for being so short staffed. We need
help!!!"
We need help. We need your help.
Head Start programs need dedicated assistance in paying staff a
living wage and competing in an increasingly challenging job market.
Adequate compensation reduces turnover and stabilizes programs.
But the impact is far greater, given ``turnover disrupts child-
teacher relationships, which are crucial to children's developmental
outcomes,'' according to a recent report from the Federal Reserve Bank
of Minneapolis. The report notes: ``Head Start participants found that
kids who experienced higher teacher turnover during the school year had
smaller gains in vocabulary and literacy and higher levels of parent-
reported behavior problems than peers who had more continuity with
their caregivers (Markowitz 2019).
With that in mind, the National Head Start Association (NHSA) is
recommending an FY23 LHHS-Education Appropriations funding level of
$14.4 billion for Head Start to help do just that. This includes three
sizable, but necessary increases to rescue this critical federal-local
program.
(1) $596 million cost-of-living adjustment (COLA) increase: Rising
inflation is an additional stress point on our workforce and the
families we serve. Head Start's cost of living adjustment for FY22 was
2.3 percent or approximately one-third the rate of inflation. This is
not an aberration; historically, salary increases have either been just
at inflation (when it is low) or below it (when inflation is high, like
this year) resulting in a cumulative and chronic underpayment that
leaves the Head Start workforce further behind private sector employers
of every kind. The FY23 recommended COLA at a 5.4 percent increase
would be an honest, responsible increase even though it is well-below
year-over-year inflationary levels.
(2) $2.5 billion in annual workforce compensation: Under current
pay constraints, Head Start and Early Head Start can't compete.
Notably, the five West Virginia Head Start grantees that are school
boards report no vacant positions likely due to the higher wages they
are able to pay. In other words, the workforce crisis facing early
childhood education is clearly a solvable problem. Research has clearly
shown experienced, well-trained staff are key to achieving the positive
outcomes which Head Start has demonstrated over the decades; however,
the constant churn of teachers and staff due to low wages-in addition
to the significant vacancy rate-threatens Head Start's record of
success. We urge you to take the necessary action to press for passage
of $2.5 billion per year in Head Start workforce compensation
realignment. This is a critical first step to addressing the chronic
issues that stand in the way of parents' ability to fully participate
in the workforce and children from being prepared for success in
school.
(3) $262 million for quality improvement funding (QIF) trauma-
informed care: In the aforementioned survey, 56 percent of respondents
indicated pay was the leading cause of employee loss. The second
highest was work conditions, with 26 percent of respondents indicating
both pandemic-related stress and burnout, combined with children
presenting complex behavioral and social challenges, create an
overwhelming work environment. We agree. Head Start staff need
additional resources, training, and counseling support to lead
classrooms and children through this incredibly difficult season. We
are thankful that Congress has recognized and funded QIF trauma-
informed care and welcome this support. Much more needs to be done to
support the wholeness and wellness to the children and families we
serve as well as the Head Start workforce.
In the weeks ahead, the Head Start community would appreciate
Congress's full embrace of the NHSA FY23 Recommendation of $14.4
billion and joining in on a singular focus of addressing Head Start
workforce issues too long brushed aside. Our teachers, classroom aides,
bus drivers, and support staff deserve to earn a living wage. Please
take time this month to talk with local Head Start leaders in your
community. I am quite sure you will immediately hear the daily struggle
to keep and retain quality staff and the desperate need for change.
Thank you for your consideration.
[This statement was submitted by Lori Milam, Executive Director,
West Virginia Head Start Association.]
______
Prepared Statement of the Western Governors' Association
Chair Murray, Ranking Member Blunt, 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.
The COVID-19 pandemic has had widespread effects on the labor
market and the health care system in the United States. As the recovery
continues, it is critical to align policies, performance metrics,
regulations and reporting requirements across Federal workforce, human
services, housing and education agencies in order to achieve the best
outcomes for program participants.
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. More flexibility under the current WIOA streams
is needed to better anticipate coming labor market disruptions and
workers who are not traditionally eligible for assistance or as at-risk
incumbent workers prepare for displacement. That flexibility should
include allowing Governors to fund outreach and marketing of services
in an effort to reach more people. Short term and competitive funding
for innovative programs is inefficient and creates unintended obstacles
for small States with limited grant writing resources.
Western Governors support the expansion of registered
apprenticeship programs and 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 be provided through line-
item formula funding and aligned with existing efforts to foster a
coherent system with minimal duplication at the Federal, State and
local levels.
Western Governors support efforts to increase student access to
short-term education and skills training, including through expanding
the Pell Grant program to include high-quality short-term training
programs leading to industry-recognized credentials. Western Governors
support funding high-quality career and technical education (CTE)
programs through the Career and Technical Education for the 21st
Century Act (Perkins V). Adequate funding of Perkins State Grants is
essential to ensure that CTE programs align with statewide visions for
education and workforce development. Governors and States are in the
best position to determine how to use Federal CTE funding to meet the
needs of their economies.
Better linkages between K-12, higher education and the workforce
system are needed. Western Governors call for a carveout of Perkins
funding directed to the workforce system to support stronger linkages
to K-12 and higher education. Further, to address the crisis in youth
employment, Western Governors urge an expanded WIOA funding stream for
youth, targeted toward youth who are disconnected from school and work,
as well as the establishment of a Youth Employment Taskforce to make
further recommendations on effective workforce strategies to address
the crisis in youth employment. Finally, to ensure that workforce
development programs are inclusive of people with disabilities,
Congress should provide additional funding and training for States to
conduct outreach and education on equal opportunity and
nondiscrimination and to link workforce programs with K-12 special
education services.
Improvements in state data infrastructure are needed to better
support State education and workforce development, including responding
to changing labor market demand, improving the effectiveness of
policies and programs, and improving the delivery of services. The
subcommittee should provide adequate funding to support state Labor
Market Information shops and the U.S. Bureau of Labor Statistics.
States should receive a greater share of funds under the state-federal
cooperative statistics programs. Western Governors also call for
significantly greater ongoing funding through the Workforce Information
Grants to States to enhance state capacity evidence-based decision
making and the production of locally relevant labor market
intelligence. Finally, Western Governors recommend that Congress invest
long-term in multi-State data collaboratives and in more voluntary
state participation in collaboratives to enable a truly national data
infrastructure to emerge.
Building a sufficient cybersecurity workforce is especially
important to Western Governors. A skilled cyber workforce is imperative
to the protection of 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. Western Governors request sufficient appropriations
for high-quality cybersecurity education and workforce development
programs to grow and sustain the cybersecurity workforce, including
those that target underrepresented populations, those that include
rotational components to retain personnel, and work-based learning
opportunities such as apprenticeships. The Governors support increased
funding for the CyberCorps: Scholarship for Service program and
educational initiatives, including the National Institute of Standards
and Technology's Initiative for Cybersecurity Education and the
National Centers of Academic Excellence in Cyber Defense. Civilian
cybersecurity reserves can also help augment cybersecurity workforce
capacity.
Despite efforts by Western Governors to address the shortage of
qualified health care workers in our States, significant challenges
remain. Governors urge the Federal Government to examine and implement
programs to ensure States have an adequate health care 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 and
representation in the health care workforce to improve health outcomes
for all. Western Governors recognize efforts to support the health care
workforce in the American Rescue Plan Act (ARPA, Pub. L. 117-2) and
request a continued focus on this important topic. They also encourage
the subcommittee to fund new types of personnel, such as community
health workers or promotores, in order to further extend the health
care team and ensure that patients are connected to resources, and
innovation within the behavioral health care workforce to address gaps
in the continuum of care professionals.
Americans are facing an alarming increase in adverse mental health
conditions, substance misuse, and suicidal ideation, trends that have
been exacerbated by the COVID-19 pandemic. Western Governors appreciate
the substantial investment in mental and behavioral health services in
ARPA and support continued efforts to improve the quality and quantity
of these services. They are essential to reducing suicide rates and
treating a range of behavioral health conditions, including substance
use disorder. The top 10 States with the highest suicide rates are 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 to17. 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
health care providers to better incorporate behavioral and physical
medicine into their practice of care. The expansion of early
intervention, diversion, and community reentry programs aid in such
efforts.
COVID-19 has also laid bare the importance of investing in our
Nation's public health system. Congress should examine the lessons
learned from COVID-19 in collaboration with States, and based on these
findings, they request that the subcommittee ensure that States and the
Nation have the capability and necessary public health infrastructure
investment to effectively confront future public health challenges. The
expansion and support of international health surveillance and public
health threat detection mechanisms is of critical importance to these
efforts as well.
In addition, Western Governors are committed to identifying risks
facing high utilizers of health care services and addressing social
determinants of health. They encourage the continued support of
services and programs, especially those that empower States and local
governments to solve persistent economic and social conditions that
often hinder health outcomes.
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 Women First Research Coalition (WFRC) appreciates the
opportunity to provide this outside witness testimony to the Senate
Committee on Appropriations subcommittee on Labor, Health and Human
Services, Education, and Related Agencies (Labor-HHS) for the Fiscal
Year (FY) 2023 LHHS appropriations bill. As you begin work on FY 2023
appropriations, we respectfully request that you provide at least
$49.048 billion for the National Institutes of Health (NIH). We also
request that you consider including our report language on a ``Women's
Health Research Study'' and a ``Menopause RCDC'' in the report that
accompanies the final FY 2023 Labor-HHS appropriations bill.
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 to raise 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.
funding for nih
Robust, sustained and predictable funding is important for all
biomedical research, particularly research on conditions that are
unique to or predominately occur in women, including polycystic ovary
syndrome (which affects up to 20 percent of women), endometriosis
(which affects up to 12 percent of women), uterine fibroids (which
affect up to 40 percent of women), menopause (which affects all women)
and cancers of the cervix, uterus and ovary.. As Congress appropriates
funding for FY 2023, the WFRC is requesting that Congress provide
$49.048 billion, an increase of $4.1 billion, to the NIH, which would
allow for meaningful growth above inflation that would expand NIH's
capacity to support promising science in all disciplines. Almost all of
NIH's institutes and centers fund research on women's health;
therefore, any funding increases should be allocated proportionately to
all NIH institutes and centers to ensure that meritorious research in
women's health is supported across the NIH. This would build on
Congress' recent investments in NIH that have allowed for advances in
discoveries toward promising therapies and diagnostics, supported
current and new scientists nationwide and advanced the potential of
medical research. It will also allow NIH to support meritorious
research in women's health.
support for the advanced research projects agency for health
The WFRC supports the creation of an Advanced Research Projects
Agency for Health (ARPA-H), which would provide an important
opportunity to advance research in women's health if done in a manner
that protects and complements the research already being done by NIH.
Any funding appropriated to ARPA-H should be in addition to the $49.048
billion requested for the NIH. Despite the fact NIH has implemented
policies related to sex as a biological variable and taken steps to
identify women's health topics where additional research is needed,
significant gaps remain in our understanding of health conditions
unique to or occurring predominantly in women and in the translation of
the research conducted on these topics, 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 and severe morbidity crisis; increasing
rates of preterm birth; 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;\1\ and there
are significant gaps in our understanding of women's fertility and
hormonal functions.\2,3\
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\1\ https://www.fda.gov/medical-devices/implants-and-prosthetics/
urogynecologic-surgical-mesh-implants.
\2\ 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.
\3\ 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 is a strong need for a greater investment in research of
these conditions and many others that occur in women's health before,
during, and after pregnancy. Often, women's health is not looked at
across the lifespan and we fail to appreciate the very long-term
consequences of adverse pregnancy progression and outcomes. We believe
ARPA-H has the potential to transform women's health research by
investing in a more comprehensive approach to translating basic science
into cures.
The existing NIH Institutes and Centers play a critical role in
improving human health as evidenced by the work done by the agency in
the development of effective COVID-19 treatments and vaccines and this
work must continue to receive robust, sustained support. As such,
funding for ARPA-H must supplement, not substitute, for the research
funded by the existing Institutes and Centers. The basic science
supported by the agency are the foundation for the transformational
work envisioned for ARPA-H. Therefore, WFRC recommends that the same
proportional increases in funding provided to the existing NIH
institutes and centers be provided to ARPA-H once established. We also
support housing ARPA-H outside of the NIH, in order to prevent funding
cuts to existing Institutes and Centers.
support a study on women's health research
While the National Institutes of Health (NIH) has taken steps to
better track and evaluate the funds being spent on women's health
research, we remain concerned about the research gaps, what is being
funded and what NIH classifies as women's health research as detailed
above. To address these concerns, we request the inclusion of report
language directing the NIH Director to contract with the National
Academy of Science, Engineering, and Medicine (NASEM) to conduct a
study on gaps in women's health research, and to provide $2 million to
support this work.
Specifically, we envision the study would be designed to explore
the proportion of research on conditions that are more common or unique
to women, establish how these conditions are defined, evaluate sex and
gender differences and racial health disparities, and determine the
appropriate level of funding that is needed to address gaps in women's
health research. Historically, there has been an inadequate
representation of minority women as both researchers and research
participants. There are clear health disparities among conditions that
are more common or unique to women, and the NASEM is well suited to
conduct this study to explore these gaps, by looking at women's health
more comprehensively, across the lifespan.
Accordingly, the WFRC requests the inclusion of the following
language in the report accompanying the FY 2023 LHHS Appropriations
bill with regards to the NIH Office of the Director:
Women's Health Research Study.--The Committee recognizes
persistent gaps remain in the knowledge of women's health. To
address these gaps and improve women's health, the Committee
includes $2 million within the National Institutes of Health to
contract with the National Academy of Sciences, Engineering,
and Medicine (NASEM) to conduct a study on the gaps present in
women's health research across all institutes and centers at
the NIH. Specifically, the study should be designed to explore
the proportion of research on conditions that are more common
or unique to women, establish how these conditions are defined
and ensure that it captures conditions across the lifespan,
evaluate sex and gender differences and racial health
disparities, and determine the appropriate level of funding
that is needed to address gaps in women's health research at
the NIH. The Committee requests the Academies to, not later
than 18 months after the date on which the agreement is
entered, to submit to Congress a report containing the findings
of the study and the recommendations to address research gaps
in women's health research, including measurable metrics to
ensure that this research is accurately tracked to meet the
continuing health needs of women.
support for an rcdc on menopause
The RCDC system is a computer-based process that sorts NIH-funded
projects into categories of research area, disease, or condition. There
is currently no RCDC category for menopause, which is a condition that
will impact all women during their lifespan and remains understudied in
research. Since menopause is critical to understanding women's health,
the WFRC believes NIH should create a RCDC category for this condition
so that this research can be tracked and analyzed over time.
Furthermore, the creation of an RCDC for menopause will allow for
increased access to information and greater transparency of funded
research projects related to the study and treatment of menopause.
Therefore, the WFRC respectfully requests that you include the
following report language in the report that accompanies the FY 2023
LHHS appropriations bill under the NIH Office of the Director:
Menopause.--The Committee is concerned about the lack of a
Research Condition, Disease Categorization (RCDC) category for
menopause, which limits the ability to analyze current and
future biomedical research being done on menopause. As
menopause is a condition that will impact all women and is an
important component of understanding women's health across the
lifespan, it is critical that the NIH report on and be able to
track the intramural and extramural research being done. The
Committee requests that the NIH create a RCDC code for
menopause.
conclusion
Thank you again for the opportunity to submit testimony to the
Committee as you begin your work on the FY 2023 appropriations bills.
We look forward to working with you to ensure that there is appropriate
funding for women's health research at the NIH, to address gaps in
women's health research and to improve health across the lifespan for
women.
______
Prepared Statement of the Women's Health Innovation Coalition
Thank you for the opportunity to comment on the National Institutes
of Health (NIH) budget priorities for FY 2023. We provide this
testimony in support of increased funding for research grants focused
on addressing health diseases and conditions that solely,
disproportionately and/or differently impact women within the FY 2023
Labor, Health and Human Services, and Education Appropriations bill.
The Women's Health Innovation Coalition (WHIC) is a group of
innovators, investors, clinicians, analysts, and executives with the
shared goal of advancing innovation in women's health. We source
innovative solutions to address unmet needs in diseases, conditions,
and indications that impact the health of women and minorities. Through
collaborative advocacy and policy efforts, we are working to drive
initiatives that demonstrate women's health is not a niche market and
to promote greater gender--relevant data transparency and increased
investment in R&D to bring innovations to market that address gaps in
care that harm women and minorities and result costly medical
expenditures.
We have identified eight areas of health that solely,
disproportionately, or differently impact women, requiring further
government research investment and better education and awareness among
patients and clinicians in order to advance scientific understanding
and medical innovations:
cardiovascular health
Cardiovascular disease affects one in 16 women over the age of 20,
is responsible for nearly one in five deaths annually for women, and
women 55 and under are twice as likely to die from a heart attack than
men.\1\ Furthermore, women are seven times more likely to be
misdiagnosed and discharged in the middle of a heart attack than men,
as men and women present with different symptoms during cardiovascular
distress and too many physicians continue to be trained to only see
signs in white men.\2\ Women with cardiovascular disease are also more
likely to report poorer patient experience, lower health-related
quality of life, and poorer perception of their health when compared
with men.\3\ This translates to unnecessary costs across the United
States healthcare system, as unrecognized and inadequate treatment of
cardiovascular diseases will surpass $1 trillion by 2035.\4\
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\1\ Mayo Clinic, October 4, 2019: https://www.mayoclinic.org/
diseases-conditions/heart-disease/in-depth/heart-disease/art-20046167.
\2\ Coya Partners, 2020: https://www.coyapartners.com/blog.
\3\ Victor Okunrintemi, Javier Valero-Elizondo, Benjamin Patrick,
et. al, ``Gender Differences in Patient-Reported Outcomes Among Adults
with Atherosclerotic Cardiovascular Disease'', December 10, 2018,
https://www.ahajournals.org/doi/10.1161/JAHA.118.010498.
\4\ RTI International, ``Cardiovascular Disease Costs will exceed
$1 Trillion by 2035'', February 14, 2017: https://www.rti.org/news/
cardiovascular-disease-costs-will-exceed-1-trillion-2035.
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autoimmune and immunological diseases
With 80 percent of all patients diagnosed with autoimmune diseases
being women and 100 types of them predominantly affecting women, this
area of health must be addressed.\5\ Part of this disparity can be
attributed to many autoimmune disorders' tendency to affect women
during periods of extreme stress, such as pregnancy, or during period
of hormonal change.\6\ There are few treatments available for many
autoimmune diseases, which can be uncomfortable, painful and impact a
woman's ability to work and care for her family. Autoimmune diseases
are also extremely costly, as the National Institutes of Allergy and
Infectious Diseases has estimated that the cost of treating autoimmune
disease in the U.S. is greater than $100 billion annually.
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\5\ The Prevalence of Autoimmune Disorders in Women: A Narrative
Review, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7292717/.
\6\ Angum, Fariha et al. ``The Prevalence of Autoimmune Disorders
in Women: A Narrative Review.'' Cureus vol. 12,5 e8094. 13 May. 2020,
doi:10.7759/cureus.8094.
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oncology
Women bear the burden of inequitable oncological treatment options
as well as disparities in specific cancers. For example, one in five
people who are diagnosed with lung cancer have never smoked, yet non-
smoking women are three times more likely to have the disease.\7\
Gender disparities are also pervasive in terms of treatment options, as
a recent study showed that the odds of receiving radiation were 60
percent for women and 70 percent for men, and the odds for receiving
intensive chemotherapy were 35 percent for women versus 46 percent for
men.\8\ In terms of mortality, the ratio of cancer deaths versus non-
cancer deaths was 1.92 times higher for women than for men.\9\ Cancers
also disproportionately impact minorities and populations with social,
environmental, and economic disadvantages that hinder access to
healthcare. African American and Caucasian women have similar rates of
breast cancer, yet African American women are more likely to die from
the disease. Hispanic and African American women also have higher rates
of cervical cancer than women of other ethnic groups, with African
American women having the highest rates of death from cervical
cancer.\10\ In addition, ovarian cancer is the only gender-specific
cancer with greater than 50 percent mortality rate, and accounts for
more deaths than any other cancer of the female reproductive system
with Black women having a much higher 5-year mortality rate (62
percent) vs. Caucasian women (54 percent).\11\
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\7\ Brigham and Women's Hospital, ``Why Women's Health Can't
Wait'', 2014, https://www.brighamandwomens.org/assets/bwh/womens-
health/pdfs/connorsreportfinal.pdf.
\8\ Ibid.
\9\ Siegel RL, Miller KD, Jemal A. Cancer Statistics, 2017. CA: A
Cancer Journal for Clinicians 2017; 67(1):7-30.
\10\ National Cancer Institute, ``Cancer Disparities,'' https://
www.cancer.gov/about-cancer/understanding/disparities.
\11\ American Cancer Society, https://www.cancer.org/content/dam/
cancer-org/research/cancer-facts-and-statistics/cancer-facts-and-
figures-for-african-americans/cancer-facts-and-figures-for-african-
americans-2019-2021.pdf.
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aging and bone health
A women's risk of bone fracture is equal to her combined risk of
breast, uterine, and ovarian cancer, which is four times the rate of
men. Of the 10 million Americans with osteoporosis, approximately 80
percent are women and a proximately one in two women over age 50 will
break a bone because of osteoporosis.\12\ Studies have shown that there
are multiple reasons why women are more likely to get osteoporosis than
men. Women tend to have smaller and thinner bones, and women's
estrogen, a hormone that protects bones, decreases when women reach
menopause.\13\ This prevalence of bone diseases is not only dangerous
for women but is also extremely costly. The annual cost of
osteoporosis-related bone breaks is $19 billion for patients, their
families, and the healthcare system, and is expected to continue to
rise.
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\12\ https://www.nof.org/preventing-fractures/general-facts/what-
women-need-to-know/.
\13\ National Osteoporosis Foundation ``What Women Need to Know''
https://www.nof.org/preventing-fractures/general-facts/what-women-need-
to-know/.
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gynecological and sexual health
Several gynecological conditions women face throughout their lives
and especially as they age are often ignored with insufficient
diagnostics and treatments. For example, the annual gynecological exam
does not screen for ovarian cancer and 1 in 5 women have masses, yet
few diagnostics can catch the cancerous tumors during the critical
early stages, especially among women of color who are most often
diagnosed too late and die sooner. In addition, more than 4,000 women
enter menopause every day in the U.S., but only one in five OB/GYN
residency programs provide menopause training to support them and
nearly 80 percent of medical residents admit that they feel ``barely
comfortable'' discussing or treating menopause.\14\ Also, 84 percent of
women experience menopause symptoms, and more than one in 10 (12
percent) say their symptoms can be severe or debilitating. Yet
menopause is understudied and misunderstood by physicians and
researchers alike with few treatments available for the impact on women
that is so severe, many stay home or retire early when they are
otherwise in the prime of their career. Most do not understand when
symptoms are ignored or misdiagnosed during menopause years, they can
lead to severe complications, preventable death, and avoidable and
costly medical expenditures. These conditions cost the U.S. healthcare
system four times the costs of their non-symptomatic peers. Globally,
menopause-related productivity losses can amount to more than $150
billion a year and if costs to the healthcare system are included, the
total price tag of menopause could be higher than $810 billion.\15\
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\14\ https://www.aarp.org, Note this study also found 84 percent of
women say that their menopausal symptoms interfere with their lives,
including at work.
\15\ Reenita Das, a partner and senior vice president for
healthcare and life sciences at consulting firm, Frost & Sullivan,
https://apple.news/AkFLvCBgGST6IKWENlXbf_w.
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reproductive health
Disparities in maternal and reproductive health are also a major
concern in the U.S. Studies document decades-long racial and ethnic
disparities in several areas of reproductive health, including
contraceptive use, care for sexually transmitted infections and the
human papillomavirus (HPV) vaccination among younger women aged 18 to
25 years, as well as reproductive cancers, preterm deliveries, and
maternal morbidity and mortality in all age groups.\16\ Most women lack
sufficient resources, information and access to care related to
perinatal mood and anxiety disorders (PMADs), the number one
complication resulting from pregnancy and childbirth. Half of perinatal
women with a diagnosis of depression do not get the medical treatment
that they need, resulting in poor patient outcomes and increased
societal costs. The total annual societal costs incurred by PMADs,
including maternal productivity loss (such as loss of work productivity
and missing work), greater use of public sector services (such as
welfare and Medicaid), and higher health care costs due to worsened
maternal and child health, was $14.2 billion in 2017. This equates to
$4.7 billion in productivity losses, $2.9 billion in maternal health
expenditures, $3.3 billion in preterm births, and $1.6 billion in child
behavioral and developmental disorder spending.\17\ These staggering
costs and the devastating effects for mothers who suffer from PMADs
must be discussed and addressed.
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\16\ Obstetrics & Gynecology: February 2021--Volume 137--Issue 2--p
225-233, doi: 10.1097/AOG.0000000000004224.
\17\ Mathematica Policy Research, ``Societal Costs of Untreated
Perinatal Mood and Anxiety Disorders in the United States'', April 29,
2019, https://www.mathematica.org/download-media?MediaItemId=(E24EE558-
B67B-4BF6-80D0-3BC75DB12EB6).
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cognitive and brain health
Cognitive and brain function is another health area in which
significant disparities exist between men and women. Two-thirds of
Alzheimer's patients over 65 are women and two--thirds of caregivers
are women.\18\ Moreover, despite clear biological differences in
cognitive function, women are not proportionately represented
throughout the research process, and female-specific cognitive diseases
are not proportionately funded. In medical research for anxiety
disorders, 90 percent of animal subjects are male, though women are
twice as likely to be diagnosed with anxiety in their lifetime.\19\
Although two-thirds of Alzheimer's patients are women 66 percent of
animals used in Alzheimer's research are male or of an ``unspecified
gender,'' which are mostly male. There is also a stark disparity in
funding allocation, as just 12 percent of the National Institutes of
Health (NIH)'s 2019 budget of $2.4 billion for Alzheimer's disease
research went toward projects specifically focused on women. Not only
does this hinder innovation, understanding, and treatment of
Alzheimer's disease, it also results in severe economic consequences.
If $300 million had been shifted to the NIH's Alzheimer's budget to
focus on women's brain health in that same year, it would have produced
over $930 million in economic benefits, including quality of life
improvements, and reduced medical costs.\20\
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\18\ Centers for Disease Control and Prevention, https://
www.cdc.gov/aging/caregiving/alzheimer.htm.
\19\ Gender Differences in Anxiety Disorders: Prevalence, Course of
Illness, Comorbidity and Burden of Illness, https://
www.ncbi.nlm.nih.gov/pmc/articles/PMC3135672/.
\20\ Women's Health Access Matters, ``Societal Impact of Research
Funding for Women's Health in Alzheimer's Disease and Alzheimer's
Disease Related Dementias,'' April 2021, https://thewhamreport.org/wp-
content/uploads/2021/04/TheWHAMReport_ADRD.pdf.
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adverse drug events
While recent clinical studies have included more women, for
decades, the patients who participated in clinical trials for new drugs
skewed heavily male. As a result, many drugs commonly prescribed to
this day do not account for gender differences making them ineffective
or causing patient harm. Today, most pre-clinical trials continue to
exclusively use male mice and male animals even though sex differences
are found at the cellular level. Few pre-clinical trials use both sexes
to inform the next phase of studies in humans, and even if experiments
do include female animals, the subgroup analyses by sex are not
reported.\21\ During the next phase of research when the clinical trial
includes women, often for the first time, and always at a level far
below the actual representation of women in prevalence rates for the
disease for which the drug is being developed to treat, this
underrepresentation is magnified with greater room for error and ADE
occurrence.
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\21\ It is time to integrate sex as a variable in preclinical and
clinical studies, https://www.ncbi.nlm.nih.gov/pmc/articles/
PMC6056479/.
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recommendations
With the continued failure to address so many women's health
issues, we must increase NIH investment in advancing research in these
areas. An analysis of NIH funding patterns found that in nearly three-
quarters of the cases where a disease afflicts primarily one gender,
the funding pattern favors males, in that either the disease affects
more women and is underfunded, or the disease affects more men and is
overfunded. Furthermore, the disparity between actual funding and that
which is commensurate with burden is nearly twice as large for diseases
that favor males versus those that favor females.\22\ Finally, just 11
percent of NIH research dollars are dedicated to women's health.
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\22\ Arthur A Mirin, ``Gender Disparity in the Funding of Diseases
by the U.S. National Institutes of Health'' July 30, 2021, https://
pubmed.ncbi.nlm.nih.gov/33232627/.
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Therefore, we ask that Congress increase funding and programmatic
investments for the NIH to prioritize all health conditions that
solely, disproportionately or differently impact women and minorities.
We must improve scientific understanding, investment, research,
treatments, diagnostics and awareness for these populations that
represent over half the population. We are eager to work with you in
this endeavor, find ways to match government funding by incentivizing
private investment in this research, and work in a concerted effort to
advance the health of women and minorities. Thank you for your
consideration.
______
Prepared Statement of the Workforce Innovation and Opportunity Act
The May 21, 2014 Statement of Managers to Accompany the Workforce
Innovation and Opportunity Act \1\ (WIOA) provides broad intentions to
modernize the Nation's workforce development, adult education, and
vocational rehabilitation systems through a focus on sector strategies,
career pathways, and strategic alignment. WIOA required disaggregated
reporting of outcomes by special population as well as participation
and performance on key indicators by age, race, ethnicity, and gender.
Even though Congress' statement does not once use the word 'equity,'
clearly equitable outcomes for community members most in need was at
the heart of its intent then and what is needed now.
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\1\ https://www.help.senate.gov/imo/media/doc/
WIOA%20Statement%20of%20Managers.pdf.
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Our 2022 policy comments are guided by principles of equity,
efficiency and quality for youth and adults, responsiveness to
providers, and collaboration across all WIOA and relevant other
partners. The comments are distilled from quantitative and qualitative
research activities undertaken in a comprehensive WIOA landscape
analysis project conducted by World Education, Inc., as well as decades
of experience in local, State, and Federal adult education and
workforce development systems.
2022 WIOA Reauthorization Opportunities
Many of the innovative service designs such as career pathway and
apprenticeship programs and equity levers that WIOA codified have yet
to be fully utilized, and reauthorization should double-down on
implementation of those key levers. In addition to increasing the
potential impact of the existing policy, a number of substantive
changes would make it easier for WIOA practitioners to partner and
provide quality education, training, and other services to their
communities.
WIOA's implicit purpose is equity, and we respectfully submit these
recommendations to strengthen the joint purpose of an equitable
economic recovery and a prosperous future for all America.
Include a Separate Title for Funding America's Job Centers (AJCs),
Including Virtual Services
Fund an Equitable Network. A separate title or section within Title
I in WIOA should be included to provide for the funding of the AJC
network, including brick and mortar as well as virtual infrastructure
and certain shared service delivery costs. This direct additional
infrastructure funding would solve a longstanding issue and could
potentially free up more resources for services. The recommended
separate title would describe allowable uses of funding and specify
what constitutes fair and reasonable infrastructure costs. These funds
would be distributed through the local allocation formula used for
Title I and would be administered under a MOU (Memorandum of
Understanding) negotiated between the local board and governor. Under
this model, the WIOA core programs would have a shared presence in the
physical and virtual AJCs, and other partners could opt to co-locate or
to provide remote access to services, depending on local needs and
available resources.
Amend Deficit-Based Language That Creates Deficit-Based Programming and
Leverage Community Stakeholders to Design Strategies
Address the Barrier and Recognize Assets and Experience. WIOA
reauthorization needs to address this deficit-based language while
maintaining critical reporting on who receives what services and to
what impact. One way to do this would be to reframe 'individuals with
barriers' to 'individuals CONFRONTING barriers' and to clearly
articulate that the public workforce system's role is to support that
confrontation with resources needed to overcome barriers. Another way
is to rethink eligibility and shift the mindset of fixing individuals
with barriers to a system supporting economic opportunity and mobility
for those that can benefit from it.
The deficit-based language is also problematic in how it affects
the process of designing effective services. Reauthorization should
involve a stakeholder consultative process, much like that included in
Strengthening Career & Technical Education for the 21st Century Act
(Perkins V) in which people confronting the barriers detailed in WIOA
priority populations should be involved in designing the services for
their communities. Adults in our communities have skills and
experiences that can be a powerful starting point for building toward
their career aspirations. WIOA needs to leverage job seekers' assets in
order to design more effective solutions.
In this process of designing effective services, consideration
should be given to ``lift up alternatives and approaches to workforce
development beyond those focused on jobs, skills, training, and
individual worker assets and deficits. Specifically, consider strategy
and policy approaches that expand access to our Nation's safety net;
address 'digital redlining' and invest in digital access and learning;
and support access to high quality jobs and benefits.'' \2\
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\2\ https://workforce-matters.org/a-racial-equity-framework-for-
workforce-development-funders/.
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Optimize Alignment of Services, Systems, Resources, and Reporting
Across WIOA Core Programs and WIOA Partner Programs
Provide Flexibility. Incorporate authority that would allow Tribal,
municipal, county and State governments to request flexibility and
grant waivers to pool resources from various WIOA Titles and WIOA
Partner Programs to build career pathway systems and programs toward
the goal of improved outcomes for low-income youth and adults in the
domains of education, training, employment, earnings, health and
wellbeing.
Invest in Evidence-Based Program AEFLA Models
IET is Evidence-Based and a Racial Equity Strategy--Create an
Integrated Education & Training Funding Stream. The Institute for
Education Science (IES) What Works Clearinghouse (WWC) holds the
highest standard for rigor in independent education research, seeking
to drive education policy less by 'professional wisdom' and more by
evidence-based practice. In September, 2020, the National Center for
Education Evaluation at IES released an Intervention Report on I-BEST.
This gold-standard research identified three randomized control trial
studies that meet the WWC criteria, documenting impacts on 45,413
learners in nine States and demonstrating statistically significant
positive impacts for the career pathway participants versus the control
group:
--+18 positive effects on industry-recognized credential, certificate
or license completion;
--+10 potentially positive effects on short-term employment; and
--Potentially positive effects on short-term earnings.\3\
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\3\ (2020, September). Integrated Basic Education Skills and
Training (I-BEST). Retrieved from https://ies.ed.gov/ncee/wwc/
InterventionReport/706.
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Ability to Benefit to Support Adult Dual Enrollment in IET. The
Ability to Benefit (ATB) student financial aid provision in the Higher
Education Act (HEA) provides underserved students access to accelerated
and integrated high school and college credentials through adult dual
enrollment. When creating IET with HEA Title IV-eligible student
financial aid, Ability to Benefit (ATB) is the obvious choice. However,
ATB is poorly understood and massively underutilized, in no small part
due to the fluctuation of legislative approval.
Integrated Education and Training works and it works to motivate
persistence with individuals WIOA is meant to serve. A reauthorized
WIOA Title II AEFLA needs to directly invest in Integrated Education &
Training with dedicated funds for this evidence-based strategy and
clear guidance on utilizing the Ability to Benefit provision of the
Higher Education Act within an adult dual enrollment strategy. Pell
grants are critical for adults both for immediate tuition needs and to
offset the opportunity costs of being an adult student with living
expense funding.
Fund Remote and Blended Programs and Make Digital Skill Development
an Allowable Activity and Fund Use. Remote learning programs require
additional funds to purchase, maintain and replace devices, software
licenses, technology navigators, and remote classroom aides. Emerging
COVID-19 based research suggests that those costs are 12 percent-22
percent higher than straightforward in-person delivery. This is the
time to invest in them and take adult education fully into the 21st
century and beyond. There is a strong foundation to build on and scale
up. World Education's EdTech Center has been documenting these models
and specific best practices and providing free professional development
to providers.
In addition, amend WIOA to make digital capability/literacy an
allowable activity and fund use in the same way ABE, ASE, ESOL, and
Integrated English Language and Citizenship services are. Amend the
definition of Measurable Skill Gain to include documented digital
skills.
Fund Career Navigators
Fund A Navigation System. Provide direct funding through WIOA for
career navigators including 2.5 percent of that funding for navigator
preparation, professional development, and support. Provide
approximately $4 billion annually in new Federal funding to make
coaching available to 20 million unemployed and low-wage workers within
the workforce system, community colleges, and community-based
organizations. This could be done via the following mechanisms:
--Additional funding for Wagner-Peyser (WIOA Title III) to expand
access to career coaching for the newly-unemployed;
--Increased funding for WIOA Titles I, II, and IV to create coaching
positions at the AJCs and other workforce service providers;
--Ensure career navigation is articulated as an AEFLA service and
make the use of funds for this purpose allowable;
--Update the Reemployment Services and Eligibility Assessment program
to encourage more access to high-quality career navigators for
unemployment insurance recipients; and
--Funding delivered through WIOA for States to provide career and
digital navigator funding to community-based organizations,
labor-management partnerships and for eligible institutions in
partnership with employers and labor unions to offer career
navigation/coaching supports at places of work and community
colleges, with a focus on underserved communities. Clarify that
some of this funding can go to providers of direct online
navigation services, as well as to non-profit providers of
navigator professional development and supports.
Improve data collection on career navigation services across all
WIOA titles, and evaluate the provision of career navigation services
through the AJC network, including assessing the extent to which these
services can help reduce equity gaps in employment and earnings
results.
Additionally, Digital Navigator initiatives \4\ are providing
valuable just-in-time digital skill building to adults for career and
wider community needs, but these efforts would benefit from direct
connection to and investment from the public workforce system.
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\4\ https://digitalus.org/digital-navigators/.
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Respectfully.
[This statement was submitted by Priyanka Sharma, Vice President,
[email protected] and Judy Mortrude, Senior Technical
Advisor, [email protected].]
______