[Senate Hearing 117-]
[From the U.S. Government Publishing Office]
DEPARTMENT OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND
RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2022
----------
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 158 public television licensees, we
appreciate the opportunity to submit testimony for the record on the
importance of federal funding for local public television stations and
PBS (Public Broadcasting Service). We urge the Subcommittee to support
$565 million in two-year advance funding for the Corporation for Public
Broadcasting (CPB) in FY 2024, $20 million for the Public Broadcasting
Interconnection System in FY 2022 and $30 million for the Ready To
Learn program at the Department of Education in FY 2022.
corporation for public broadcasting: $565 million (fy 2024)
two-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 never been more critical than
during the COVID-19 pandemic, when local public television stations in
all 50 states provided enhanced educational services and content to
help support students, families, teachers, and schools with the sudden
challenge of virtual learning.
Federal funding for CPB is essential to making these services
available to all Americans, including those in rural and underserved
areas, and this funding enjoys the overwhelming support of the American
people. At about $1.40 per person per year, this funding provides an
enormous return on investment for all Americans.
Yet these vital community-based services were level-funded at $445
million for a decade--resulting in an approximate $100 million in lost
purchasing power.
Recognizing this loss, we appreciate that Congress increased the
forward funded CPB appropriation by $20 million for FY 2022 and an
additional $10 million for FY 2023.
While public broadcasting is grateful for these increases, The
public broadcasting system is still about $75 million, in inflation-
adjusted dollars, behind where the system was 10 years ago, at a time
when it 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.
Public broadcasting respectfully requests that Congress take
another substantial step toward securing our current and future public
service goals in the FY 2022 appropriations process.
The $565 million that public broadcasting is requesting in FY 2022
for FY 2024 will help restore lost purchasing power and enable local
stations to leverage advancements in technology and make investments in
the future that will educate more children and adults, 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 public 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.
Since last spring, as schools across the country shifted to remote
learning in the face of the COVID-19 pandemic, local public television
stations rolled out new education initiatives, including curated At-
Home Learning broadcasts, airing instructional lessons created by
teachers, and educational datacasting pilots to serve students without
internet connectivity. These resources provided critical support to
schools, teachers, and parents and helped bridge the digital gap for
rural and underserved students. This extraordinary response by public
television stations, many of which partnered with state and local
education agencies, has provided much needed educational resources and
support in communities across the country.
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, NASA and
other high-quality sources. PBS LearningMedia provided teachers and
students with critical resources and digital content and the number of
users grew by 240% during the pandemic.
Additionally, local public television stations throughout the
country have partnered with PBS to bring a first-of-its kind, free PBS
KIDS 24/7 channel and live stream to their communities--providing kids
throughout the country with the highest level of educational
programming, available through local stations any time, over-the-air
and streaming. During the COVID-19 pandemic, many stations are using
this expanded broadcast capacity to directly serve families and
students from Pre-K--12 with state standards aligned educational
content and instructional content created by teachers. Last year, 60%
of kids ages 2-8 watched PBS KIDS content. Parents also looked to
public television for educational resources, with PBS Parents users
increasing by 80% 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 (APTS) 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. Through the pandemic,
public television has been providing 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 18th year in a row, PBS was ranked the most trusted among
national institutions. That trust is more important than ever. Over the
last year, when inaccurate information could endanger people's lives,
Americans could tune into their local public television station or view
their online resources for trusted information that could help keep
them safe.
Local public television stations often serve as the state-level
``C-SPAN'' covering state government actions. 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 two 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 FY 2024
is both prudent and necessary for the continued health of local
stations and the public broadcasting system as a whole--and for long-
delayed enhancements of the essential education, public safety and
civic leadership services described above.
Two-Year Advance Funding
Two-year advance funding is essential to the mission of public
broadcasting. This longstanding practice, proposed by President Ford
and embraced by Congress in 1976, establishes a firewall insulating
programming decisions from political interference, enables the
leveraging of funds to ensure a successful public-private partnership,
and provides stations with the necessary lead time to plan in-depth
programming and accompanying educational materials-all of which
contribute to extraordinary levels of public service and public trust.
Local stations leverage the two-year advance funding to raise
state, local and private funds, ensuring the continuation of this
strong public-private partnership. These federal funds act as the seed
money for fundraising efforts at every local station, no matter its
size. Advance funding also benefits the partnership between states and
stations since many states operate on two-year budget cycles.
Finally, the two-year advance funding mechanism gives stations and
producers, both local and national, the critical lead time needed to
raise the additional funds necessary to sustain effective partnerships
with local community organizations and engage them around high-quality
programs. Producers like Ken Burns, Henry Louis Gates, Jr. and Stanley
Nelson, spend years developing programs like The Vietnam War, Country
Music, The Black Church, Tell Them We Are Rising: The Story of Black
Colleges and Universities and a documentary on Muhammed Ali airing this
fall. It would be impossible to produce this in-depth programming and
the curriculum-aligned educational materials that accompany it without
the two-year advance funding.
public broadcasting interconnection: $20 million
The public television interconnection system is the infrastructure
that connects PBS and national, regional and independent producers to
local public television stations around the country. The
interconnection system is essential to bringing public television's
educational, cultural and civic programming to every American
household, no matter how rural or remote. Without interconnection,
there is no nation-wide public media service. The interconnection
system is also critical for public safety, providing key redundancy for
the communication of presidential alerts and warnings, and ensuring
that cellular customers can receive geo-targeted emergency alerts and
warnings.
Congress has always provided federal funding for periodic
improvements of the interconnection system. In FY 2018, Congress moved
to fund interconnection for public broadcasting on an annual, rather
than decennial, basis to enable dynamic, incremental upgrades in accord
with increasingly rapid advances in technology. Public television seeks
level funding of $20 million for interconnection in FY 2022.
ready to learn: $30 million (department of education)
The U.S. Department of Education's Ready To Learn (RTL) competitive
grant program, reauthorized in the Every Student Succeeds Act, uses the
power of public television's on-air, online, mobile, and on-the-ground
educational content to build the literacy and STEM skills of children
between the ages of two and eight, especially those from low-income
families.
Through their RTL grant, CPB and PBS deliver evidence-based,
innovative, high-quality transmedia content to improve the math and
literacy skills of high-need children. CPB, PBS, and local stations
have ensured that the kids and families that are most in need have
access to these groundbreaking and proven effective educational
resources. In addition to children, this outreach focuses on adults who
care for kids to empower and help them understand the important role
they play in their children's educational success.
RTL investments have supported the production and academic rigor of
PBS KIDS series: 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.
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 three months.\1\
---------------------------------------------------------------------------
\1\ Kennedy, J. L., Christensen, C., Maxon, T., Gerard, S., Garcia,
E., Hupert, N., Vahey, P., & Pasnik, S. (2021).
---------------------------------------------------------------------------
--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 five
months.\2\
---------------------------------------------------------------------------
\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.)
---------------------------------------------------------------------------
An Excellent Investment
In addition to being research-based and teacher tested, RTL also
provides excellent value for our federal dollars. In the last five-year
grant round, public broadcasting leveraged an additional $50 million in
non-federal funding to augment the $73 million investment by the
Department of Education. RTL exemplifies how the public-private
partnership that is public broadcasting can change lives for the
better.
A funding level of $30 million is requested in FY 2022 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 five years and supported through annual
appropriations. Funding in FY 2022 would provide the third year of
funding in the latest grant round. Providing $30 million for Ready To
Learn in FY 2022 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%
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
2024 for CPB in addition to $20 million in FY 2022 for public
broadcasting's interconnection system and $30 million in FY 2022 for
the Ready To Learn Program.
______
Prepared Statement of the National Public Radio
Chairwoman Murray, Ranking Member Blunt and Members of the
Subcommittee,
Thank you for this opportunity to urge the Subcommittee's support
for a robust annual federal investment of $565 million in FY 2024 in
public broadcasting through the Corporation for Public Broadcasting
(CPB) and $20 million in FY 2022 to continue upgrading the public
broadcasting interconnection system and other technologies and services
that create system efficiencies.
As the President and CEO of National Public Radio (NPR), I offer
this statement on behalf of the public radio system, a nonprofit public
service media enterprise that includes NPR, more than 1,000 public
radio stations, other producers and distributors of public radio
programming, and many stations, large and small, that create and
distribute content through the Public Radio Satellite System(r)
(PRSS(r)). Every day, public radio connects with millions of Americans
on the air, online, through smart speakers and mobile devices, and in
person to explore current news, music, enduring ideas, and what it
means to be human. About 98.5% of the U.S. population is within the
broadcast listening area of one or more public radio stations.
Federal funding provided by Congress to the CPB enables local,
noncommercial radio stations to provide news, information, and cultural
programming to meet the needs of local communities and offer diverse
perspectives. This funding is the bedrock of the public broadcasting
system. On average, for every $1 in federal grant money that a public
radio station receives, it raises $10 locally from audiences and local
sponsors. Public radio stations are locally owned and managed, and
thereby accountable to the local leaders and listeners they serve.
Many newspapers have lost circulation and advertisers, and are
closing their doors, eliminating sources of local news. More than 3,100
journalists at local public radio stations help to fill this need--
bringing trusted, reliable, independent news and information of the
highest editorial standards to keep communities connected. On May 6,
2021, the Radio Television Digital News Association recognized this
quality journalism by awarding public radio 277 Regional Edward R.
Murrow Awards--80 percent of the 343 awards in U.S. radio categories.
Continued investments in newsgathering capacities at public radio
stations will help ensure that public media can continue to fill the
gap for news and information in America's communities with expanded
local and regional coverage and digital services. CPB is helping to
fund public radio collaboration across key regions. In 2019, NPR and
public radio stations in Texas joined together to launch the first
regional reporting hub. In 2020, NPR and local stations launched a Gulf
states hub covering Mississippi, Alabama, and Louisiana--one of the
most news deprived regions in the country--as well as hubs in
California and the Midwest. Another NPR collaboration funded by CPB--
the Stations Investigations Team-supports local stations' investigative
journalism, helping with technical skills such as data collection and
analysis, as well as training. These collaborative arrangements allow
stations to utilize resources more efficiently, increase the scope of
regional coverage, and promote journalistic skills and mentoring.
Public radio stations play an important role in civics--supporting
state house coverage, reporting on local elections, and fostering
dialogue among communities. On a broader scale, public radio seeks to
connect Americans, including students, through coverage of national
civics issues and questions. For example, with CPB support, New
Hampshire Public Radio produces Civics 101: A Podcast, exploring topics
such as types of civic action, electoral processes, fundamental rights,
landmark Supreme Court cases, and key documents, such as the Magna
Carta. NHPR also provides resources for educators, including teacher
created lesson plans, to use these audio resources in the classroom. By
inspiring audiences of all ages to engage with foundational civics
topics, public radio can support the search for common ground across
the political spectrum.
Throughout the COVID-19 pandemic, public radio stations have
provided life-saving information and documented stories of how the
pandemic affected communities across the nation. In May 2020, a
collaborative reporting project from NPR and The Texas Newsroom found
that COVID-19 testing sites in four major cities in Texas were located
in predominately white neighborhoods, and through the examination of
available testing data, revealed that it was harder for people of color
to find test sites near where they lived. Following this exclusive
report, Dallas County opened two walk-up testing sites in Southern
Dallas, and Governor Greg Abbot announced that the state would bring
more testing to underserved communities. In 2021, NPR and reporters
from The Texas Newsroom and The Gulf States Newsroom teamed up to
examine the availability of COVID-19 vaccination sites, again
identifying disparities in the location of vaccination sites in major
cities in the Southern United States.
At the beginning of the pandemic, as listeners transitioned to
working and living in quarantine, public radio's digital audiences grew
250 percent. Audiences sought insight into the nation's response to the
coronavirus and how their local communities were affected. Public radio
stations provided live blogs on the coronavirus, explanations of public
health orders, and information on the development and distribution of
vaccines. By the end of 2020, public radio station websites
demonstrated continued audience growth, showing a 31 percent year-over-
year growth in average monthly users and a 67 percent increase in
monthly newsletter traffic.
Madam Chairwoman, Ranking Member, and members of the subcommittee,
I would be remiss if I did not thank you for the support you provided
to public radio, and the entire public broadcasting system, through the
Coronavirus Aid, Relief, and Economic Security (``CARES'') Act in 2020
and the American Rescue Plan Act earlier this year. Your support during
this crisis ensured that local public radio stations received needed
resources to maintain essential programming and services for the
communities that depended upon them.
We have seen that the COVID-19 pandemic further demonstrated the
value of public radio embracing the challenges of a multi-platform
media marketplace, while continuing to hold a dominant position in
traditional radio broadcasting. Public radio stations offer original
content through a variety of platforms and channels to reach new
audiences, including terrestrial radio, satellite radio, the web
(desktop and mobile), smart speakers, and podcasts--and application-
driven mobile services on iOS and Android (both phone and tablet) and
via aggregators such as Apple Music, Facebook News, Stitcher, and
TuneIn. The strength of this multi-platform approach is that public
radio can reach listeners wherever they are and attract new and diverse
listeners. For example, Southern California Public Radio--with CPB
support--is reaching out to younger, Latino audiences by producing
innovative, on-demand content and increasing the diversity of its on-
air hosts, producers and production staff. NPR has also partnered with
classrooms across the country in the annual Student Podcast Challenge,
which invites middle school and high school students to work with their
teachers to develop and produce a podcast for the opportunity to be
featured on NPR; a similar challenge is available for college students.
Thousands of students and teachers have participated across all 50
states, utilizing resources designed to support the process in the
classroom, develop journalism and broadcast skills, and connect public
radio to youth audiences.
Public radio is more than journalism. Stations offer communities
access to innovative music, arts, entertainment, and other cultural
programming. Public radio music-format stations play a key role in
supporting noncommercial music in the United States, playing a broad
collection of sounds and styles including jazz, blues, classical, folk,
alternative, bluegrass, zydeco, roots, and other eclectic genres.
Public radio stations make this wide variety of music accessible to
listeners through traditional broadcasts, streaming, live performances,
and music journalism. This programming supports discovery and
creativity, and connects local and national audiences to a broader
cultural conversation thus enriching both hearts and minds. Funding for
CPB plays a key role in enabling stations and program producers to
provide these cultural opportunities.
Public radio would not be possible without the federal funding
provided for the PRSS--the satellite content distribution system on
which the public radio system--including almost all stations, networks,
and producers--generally depends. The federal appropriation would allow
the current satellite-and-internet delivery system to continue to be
modernized and maintained with next-generation equipment and software.
The PRSS is open to all public telecommunications entities,
including independent producers; program syndicators and distributors;
national, state, and local organizations; and public radio stations.
Stations that receive programming distributed by the PRSS range from
those located in remote villages in northern Alaska and on Native
American reservations in the Southwest, to major market stations such
as WNYC in New York City and KUSC in Los Angeles. Through almost 400
downlinks, PRSS transmits programs distributed from NPR, other major
content producers, and more than 100 independent radio producers and
organizations with a variety of formats that include news, public
affairs, documentaries, classical music, and jazz.
CPB's support of interconnection for the PRSS facilitates the cost-
effective and efficient distribution of high-quality, educational
programming to this country's increasingly diverse population. As part
of that mission, the PRSS provides free, or ``in kind,'' satellite
transmission services to distribute programming to un-served or under-
served audiences. Currently, full-time support is given to three
program service groups: Native Voice One serving Native American
listeners; Satelite Radio Bilingue, a Spanish-language service; and the
African American Public Radio Consortium.
The PRSS also plays a vital role in the nation's emergency alert
system by receiving Presidential alerts (also called Emergency Action
Notification (EAN) alerts) fed directly from FEMA, which it can
transmit to public radio stations in the event of a nationwide crisis.
In addition, the PRSS MetaPub service enables local public radio
stations equipped with this technology to issue emergency text and
graphic alerts--such as tornado and hurricane warnings, evacuation
routes, and COVID-19 information--that are visible on screens and
synched with over-the-air broadcasts to mobile phones, HD radios,
``connected car'' smart dashboards, Radio Data System displays, and via
online audio streaming. To date, about 10 percent of interconnected
public radio stations have the capability to issue live text alerts
using the MetaPub system in the event of a natural or humanmade
disaster, such as a chemical spill.
In closing, public radio provides an essential public service for
local communities across the nation--embracing their diversity, telling
their stories, and keeping them informed with trustworthy, independent
news, information, and public safety alerts upon which they rely. Your
support for the CPB appropriation will ensure that public media can
continue to provide these critical services and be positioned to
embrace the future of the media landscape. Thank you for your support
of the public broadcasting system.
[This statement was submitted by John F. Lansing, President and
CEO, National Public Radio.]
______
NONDEPARTMENTAL WITNESSES
Prepared Statement of the Academy for Radiology & Biomedical
Imaging Research
Madam Chair 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 more than 200 academic
research departments, patient advocacy groups, industry partners, and
imaging societies that represents thousands of radiologists and
researchers in all 50 states. The Academy is 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 the President's request of
$52 billion for the National Institutes of Health and ask that no less
than $46.111 billion of that be for the NIH's base program budget for
FY2022. Investigator-initiated research continues to be the foundation
of basic science and discovery. The latter figure represents an
increase of $3.177 billion over the FY2021 enacted levels. Moreover,
the Academy supports a proportional increase to the National Institute
of Biomedical Imaging and Bioengineering (NIBIB), resulting in at least
$441.1 million for FY2022--a $30.4 million increase over FY2021. These
base increases reflect approximately 5% above the biomedical research
and development price index (BRDPI). 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. The Academy is grateful for the
Subcommittee's past support of NIH and encourages you to continue
advancing biomedical research and radiology and imaging science.
---------------------------------------------------------------------------
\1\ https://www.acadrad.org/about-the-academy/.
---------------------------------------------------------------------------
Imaging is not limited to any one disease or condition. Instead, it
serves as a necessary diagnostic tool that researchers and clinicians
of all types use to help advance our understanding of biological
systems and how best to develop and deliver treatments benefitting
patients. By improving our imaging tools and techniques, we broaden the
resources available to address many challenging 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 (digital breast tomosynthesis) to improve the diagnosis and
treatment of cancer types, including breast, prostate, and pancreatic,
while also researching rare and orphan diseases.
Imaging Innovation to Help Patients
Imaging tools can apply to a wide range of diseases and disorders
and can have very real impacts on patient outcomes. This results from
Congress's sustained federal investment in biomedical research at NIH
over the last several years. Over time, basic science advancements
translate into a variety of clinical settings, ultimately benefitting
patients. This Subcommittee's continued support of NIH, and
specifically NIBIB and the other Institutes and Centers that support
imaging research, will help generate future breakthroughs across many
biomedical challenges. Moreover, these innovations can be translated
into the commercial products, supporting the biotechnology industry and
jobs. Below are examples of the community's response to the COVID-19
pandemic, advances in detecting and treating cancer, and the role of
imaging in detecting and treating neurodegenerative diseases.
Medical Imaging and Data Resource Center: Merging Diagnostics and
Machine Learning
In the first of a two-year effort launched in 2020, the goal of the
Medical Imaging and Data Resource Center (MIDRC) is ``to foster machine
learning innovation through data sharing for rapid and flexible
collection, analysis, and dissemination of imaging and associated
clinical data...in the fight against COVID-19.'' \2\ MIDRC is an NIBIB-
funded collaboration between the American College of Radiology (ACR),
the Radiological Society of North America (RSNA), the American
Association of Physicists in Medicine (AAPM), and the University of
Chicago. These partners are building an accessible and shareable
database that can be used to accelerate clinical diagnosis, monitoring,
and treatment of COVID-19. Datasets are now being released for public
use. Moreover, MIDRC is developing machine learning tools for
evaluating medical images to determine the likelihood and future
severity of infection, as well as the prognosis for recovery. While
currently focused on Covid-19, the methods can be applied to any large
set of biomedical images to analyze and identify the likelihood of
disease or disorder. Leveraging these innovations and computational
tools augments human evaluation. This technology, using nationwide
data, also improves predictive tools for identifying serious conditions
and recovery prognoses while serving as an ``early warning'' system for
future outbreaks.
---------------------------------------------------------------------------
\2\ https://www.midrc.org/.
---------------------------------------------------------------------------
Combining Diagnostics and Therapy to Treat Cancer
Recent technological advances in imaging have transformed the
landscape for detecting and treating many types of cancer. Today,
diagnostics and therapeutics can be combined into one action. The
evolving field of theranostics--therapy-diagnostics--uses imaging
agents, called radiotracers, to simultaneously diagnose and deliver
therapy to affected cells. These targeted molecules are engineered to
seek out specific types of cancer cells, which may be part of primary
tumors or circulating throughout the body as metastases. Imaging for
prostate cancer is now 100 times more effective than it was only 15
years ago. And now, these same agents can be loaded with radioisotopes
designed to kill cells, becoming ``smart bombs'' aimed at cancer.
Extensive work is underway to develop smart radiotherapy agents for
numerous cancers including prostate cancer. Other targeted agents
recently approved by the FDA can simultaneously seek out and destroy
neuroendocrine cancer cells, a form of pancreatic cancer. These
advances are helping physicians become much more effective in
diagnosing and treating these and many other types of cancer, including
lymphoma and thyroid cancer. Consequently, the patient receives very
real benefits--the ability to find and treat cancer in a single action
rather than requiring repeated visits, evaluations, and more invasive
procedures. Theranostics, built on research funded by multiple
institutes at NIH, has the potential to further advance society's goal
of making cancer a treatable disease across a broad array of tumor
types.
Detecting Neurodegeneration to Manage Treatments
Every American knows at least one family with a member afflicted by
a neurodegenerative condition such as Alzheimer's disease or another
form of dementia. The inexact and sometimes subtle symptoms of these
conditions in their early stages, combined with the challenges of
studying a living human brain, can make effective diagnoses
challenging. Recent breakthroughs in imaging provide alternative, more
precise tools physicians can use to diagnose and manage the care of
affected patients. New imaging agents allow investigators to detect and
quantify amyloid plaques and Tau proteins in the brains of patients--
two leading indicators for Alzheimer's disease. This ability informs
and accelerates the search for new treatments and methods to predict
which patients may benefit from such therapies. In fact, a recent
clinical trial investigated a new treatment for the removal of amyloid
plaque from patients, an approach enabled by an approved imaging agent
supported by an NIH grant.
Treatment of another neurological condition, Parkinson's disease,
has also advanced because of emerging imaging research. Patients
suffering from essential tremor symptoms, including those with
Parkinson's, can now benefit from therapies in which magnetic resonance
imaging (MRI) images are used to direct sound waves--High-intensity
Focused Ultrasound--in a non-invasive way to alter neuronal connections
and activities. This intervention often leads to instantaneous
improvement in patient symptoms. While not a cure, alleviation of
tremor symptoms allows patients to continue managing their condition by
caring for themselves through actions such as dressing, eating, and
other activities that require fine motor skills.
summary and conclusion
Sustained and robust NIH funding is crucial to advancing our
efforts to understand and ultimately treat a myriad of diseases and
disorders across human systems. NIH investments are also a key economic
driver at local research institutions, and NIH funds flow to every
state in the nation.\3\ If we are to remain a global leader in
biomedical research and innovation, continued, strong support for NIH
is essential. Funding NIH's base program with at least $46.111 billion
will provide the robust support needed to sustain growth for biomedical
research.
---------------------------------------------------------------------------
\3\ https://www.unitedformedicalresearch.org/wp-content/uploads/
2021/03/NIHs-Role-in-Sustaining-the-U.S.-Economy-FINAL-3.23.21.pdf.
---------------------------------------------------------------------------
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 the Academy of Nutrition and Dietetics
Dear Chair Murray and Ranking Member Blunt,
The Academy of Nutrition and Dietetics appreciates the opportunity
to submit testimony to the subcommittee for FY22 appropriations.
Representing more than 112,000 credentialed nutrition and dietetics
practitioners, the Academy is the world's largest organization of food
and nutrition professionals and is committed to improving the nation's
health with nutrition services and interventions provided by registered
dietitian nutritionists.
For FY22, we strongly urge you to provide funding for the promotion
of the 2020-2025 Dietary Guidelines for Americans by the HHS Office of
Disease Prevention and Health Promotion; the CDC Division of Nutrition,
Physical Activity, and Obesity; and for Americans Older Americans Act
senior nutrition programs. In the Department of Education, we support
the Health Professionals of the Future program proposed in the
President's budget.
Funding: DGA Promotion by the HHS Office of Disease Prevention and
Health Promotion--FY2022 Request: $3 million
The 2020-2025 Dietary Guidelines for Americans were released in
December 2020 and featured new nutrition recommendations for children
from birth through 24 months and pregnant and lactating women. For the
Dietary Guidelines for Americans to achieve their intended reach and
impact, it is essential that the federal government invest in educating
consumers and health care professionals on these new guidelines.
The HHS Office of Disease Prevention and Health Promotion (ODPHP)
and the USDA Center for Nutrition Policy and Promotion (CNPP) and they
should jointly work to develop materials for comprehensive education
campaigns aimed at: (1) educating consumers on how to use the new
Dietary Guidelines to inform their dietary choices; and (2) health care
professionals to align their dietary guidance with the new Guidelines.
The campaign should be informed by scientific research on health
behavior change, as well as input from key stakeholder groups,
including nutrition assistance program participants and administrators,
health care providers, community leaders, and health and nutrition
advocates. The campaign should incorporate educational materials
representing wide diversity of cultural food preferences and should be
available in languages that meet the needs of populations at risk for
diet-related disease.
Funding: Older Americans Act Nutrition Programs (HHS ACL)
The Older Americans Act authorizes a wide array of service programs
that are overseen by the HHS Administration for Community Living and
delivered through a national network of state agencies, area agencies
on aging, and nearly 20,000 service providers.\1\ Most program
participants have household incomes below 100% of the federal poverty
level.\2\ In addition to directly combatting senior hunger during this
time of uncertainty, senior meals programs have also reduced the need
for seniors to leave their homes to get food, helping to limit their
exposure to COVID-19. A significant increase in funding for these
programs would not only allow more seniors to be served but would free
up money for the nutrition assessment and educational components of
these programs that are often sacrificed in order to reduce wait lists
for meals.
---------------------------------------------------------------------------
\1\ https://acl.gov/about-acl/authorizing-statutes/older-americans-
act.
\2\ https://fas.org/sgp/crs/misc/IF10633.pdf.
---------------------------------------------------------------------------
Congregate Nutrition Services
Congregate Nutrition Services funds nearly 80 million meals per
year for 1.5 million participants and gives seniors access to
socialization. More than one-fifth of participants have been deemed to
be at high nutrition risk. These funds are also used to provide
nutrition screening and counseling to seniors who may be at risk of
malnutrition, food insecurity or other issues. For the duration of the
COVID-19 public health emergency, service agencies have been given the
flexibility to convert their congregate meals programs into drive-up or
grab-and-go programs and to use any surplus funds from their congregate
nutrition services budget to provide home-delivered meals.
Home-Delivered Nutrition Services
Home-Delivered Nutrition Services provides more than 145 million
meals per year to 867,000 participants, with more than half of program
participants categorized as being at high nutrition risk.\3\ The
program also serves as a welfare check for isolated seniors and as a
primary access point for other home- and community-based services. The
demand for this crucial nutrition security program has been
unprecedented during the COVID-19 pandemic.
---------------------------------------------------------------------------
\3\ https://www.cdc.gov/nccdphp/dnpao/state-local-programs/
funding.html.
---------------------------------------------------------------------------
Funding: CDC Division of Nutrition, Physical Activity, and Obesity--
Division of Nutrition, Physical Activity and Obesity--FY2022
Request: $125 million
The CDC Division of Nutrition, Physical Activity, and Obesity
(DNPAO) oversees grant programs that provide funds to states and
localities to address the obesity epidemic in their communities.\3\
Adult obesity prevalence is at over 42% in 2017-2018.\4\ Obesity-
related conditions include heart disease, stroke, type 2 diabetes and
certain types of cancer that are some of the leading causes of
preventable, premature death. In 2008, the annual medical cost of
obesity in the United States was estimated to be $147 billion; the
medical cost for people who have obesity was $1,429 higher than those
of normal weight. Having obesity is a top risk factor for severe
disease, hospitalization and death from COVID-19. Minority and low-
income communities often lack access to healthful foods and safe places
to be active, and these inequities contribute to obesity and other
chronic disease disparities that are contributing to disproportionate
COVID-19 morbidity and mortality.
---------------------------------------------------------------------------
\4\ https://www.cdc.gov/obesity/data/adult.html.
---------------------------------------------------------------------------
State Physical Activity and Nutrition Program--FY2022 Request: $60
million
The State Physical Activity and Nutrition (SPAN) grant program at
DNPAO awards competitive grants to states to implement multi-component,
evidence-based strategies at the state and local level to improve
nutrition and physical activity.\5\ With its current funding level,
SPAN is only able to fund 16 states, which is does via five-year grants
(currently FY18-22). DNPAO estimates that it would cost an additional
$1.2 million per state to expand the program, so we are requesting $60
million of the $125 million for DNPAO to go to SPAN to allow every
state to receive SPAN grant funding.
---------------------------------------------------------------------------
\5\ https://www.cdc.gov/nccdphp/dnpao/state-local-programs/span-
1807/index.html.
---------------------------------------------------------------------------
Funding: Health Professionals of the Future (ED)--FY2022 Request: $200
million
COVID-19's disproportionate impact on communities of color has made
the need for health professional workforce diversity and culturally
competent care more urgent than ever. Historically Black Colleges and
Universities (HBCUs), Tribal Colleges and Universities (TCUs), and
other Minority Serving Institutions (MSIs) have long been leaders in
addressing health equity in America. Specifically, HBCUs graduate 43%
of all African Americans with postsecondary degrees in STEM fields and
roughly 15% of all African American physicians. Despite these
successes, gaps remain, particularly among registered dietitian
nutritionists.
The Health Professionals of the Future proposal \6\ put forth in
the FY22 President's budget would help close these gaps by creating and
funding a competitive grant program that provides funding to MSIs to
create or expand graduate programs that prepare students for high-
skilled jobs in the health care sector and help diversify the
healthcare sector pipeline. Authorized activities would include the
development of a career and educational pathways exploratory system to
assist undergraduate and graduate students in learning about career
opportunities in these fields and connecting students to internships
and jobs; support services to help students complete graduate programs;
scholarships or fellowships for tuition or to support on-the-job
training.
---------------------------------------------------------------------------
\6\ https://www2.ed.gov/about/overview/budget/budget22/
justifications/t-highered.pdf#page=147.
---------------------------------------------------------------------------
Contact
Please feel free to contact me at [email protected] with any
questions on these important issues. Thank you for the opportunity to
submit our recommendations to the subcommittee.
Sincerely.
[This statement was submitted by Hannah Martin, MPH, RDN, Director,
Legislative and Government Affairs, Academy of Nutrition and
Dietetics.]
______
Prepared Statement of the Ad Hoc Group for Medical Research
The Ad Hoc Group for Medical Research is a coalition of 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 $46.1 billion for
NIH's base program level budget in FY 2022.
As a result of the strong, bipartisan vision of the House and
Senate Labor-HHS-Education Subcommittees over the last six 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 life-changing cures, pioneering treatments, and innovative
prevention strategies, and in this time of unprecedented scientific
opportunity, it is essential that Congress sustain long-term robust
increases in the NIH budget.
In FY 2022, the Ad Hoc Group for Medical Research supports at least
$46.1 billion for the NIH base program level budget, including funds
provided through the 21st Century Cures Act Innovation Fund for
targeted initiatives, a $3.2 billion increase over the NIH's program
level funding in FY 2021. This funding level, supported by nearly 400
stakeholder organizations, would provide 5% growth in the base budget
above inflation, expanding NIH's capacity to support promising science
in all disciplines. We are grateful for President Biden's enthusiasm
for medical research investments and welcome opportunities to engage
with the Congress and the Administration regarding the proposed
Advanced Research Projects Agency for Health (ARPA-H). Robust growth in
the foundational research that NIH supports will be key to this vision,
and we urge lawmakers to ensure no less than $46.1 billion for the
NIH's base and that any additional funds for ARPA-H or other targeted
initiatives supplement, rather than supplant, this core investment.
We further recommend a funding allocation for the Labor-HHS-
Education Subcommittee in FY 2022 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.
In addition, we remain concerned about the lingering $16 billion
impact of the coronavirus pandemic on medical research progress in all
disease areas, and especially on the research workforce, as highlighted
by NIH Director Dr. Francis Collins' recent testimony before this
Subcommittee. The supplemental funding Congress has provided over the
last year has been instrumental in advancing research on COVID-19, with
tremendous success in the form of multiple safe and effective vaccines
to combat SARS-CoV-2 and other advances. But the pandemic has
threatened progress across numerous other areas, with particular
challenges for women, minorities, and early career investigators in the
research workforce. We continue to urge support for emergency
resources, as outlined in the RISE Act (H.R. 869/S. 289), that will
allow the NIH to rebuild the nation's strong and diverse research
workforce infrastructure and continue to invest in broad and new
research areas that will provide better health for patients in the
future.
NIH: A Partnership to Save Lives and Provide Hope. The partnership
between NIH and America's scientists, medical schools, teaching
hospitals, universities, and research institutions is a unique and
highly productive relationship, leveraging the full strength of our
nation's research enterprise to translate this knowledge into the next
generation of diagnostics, therapeutics, and cures. More than 80
percent of the NIH's budget is competitively awarded through nearly
50,000 research and training grants to more than 300,000 researchers at
over 2,500 universities and research institutions located in every
state and Washington, D.C. The federal government has an essential and
irreplaceable role in supporting medical research. No other public,
corporate or charitable entity is willing or able to provide the broad
and sustained funding for the cutting-edge basic research necessary to
yield new innovations and technologies of the future.
NIH has supported biomedical research to enhance health, lengthen
life, respond to emerging health threats, and reduce illness and
disability for more than 100 years. 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.
--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. Overall
cancer death rates have dropped by 29% including a 2.2% drop
from 2016 to 2017, the largest single-year drop in cancer
mortality ever reported.
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 six 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 2020, NIH was able to fund more than 1,400 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
and gender diversity of our citizenry, and inspire a passion for
science in current and future generations of researchers.
NIH is Critical to U.S. Competitiveness. Our country still has the
most robust medical research capacity in the world; however, other
countries have significantly increased their investment in biomedical
science, which leaves us vulnerable to the risk that talented medical
researchers from all over the world may return to better opportunities
in their home countries. We cannot afford to lose that intellectual
capacity, much less the jobs and industries fueled by medical research.
The U.S. has been the global leader in medical research because of
Congress's bipartisan recognition of NIH's critical role. To continue
our dominance, we must reaffirm this commitment to provide NIH the
funds needed to maintain our competitive edge.
NIH: An Answer to Challenging Times. Research supported by NIH
drives local and national economic activity, creating skilled, high-
paying jobs and fostering new products and industries, and catalyzes
increases in private sector investment. A $1 increase in public basic
research stimulates an additional $8.38 investment from the private
sector after eight years. A $1 increase in public clinical research
stimulates an additional $2.35 in private sector investments after
three years. According to a United for Medical Research report, in FY
2020, NIH-funded research supported more than 536,000 jobs across the
U.S. and generated more than $91 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 2022, the Ad Hoc Group for Medical
Research recommends that NIH receive at least $46.1 billion in base
funding to advance the foundational research NIH supports and continue
the momentum in our nation's investment in medical research.
______
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 hepatitis programs in the FY2022 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 our
nation's public health infrastructure, which has been decimated by
COVID-19. As you craft the FY2022 L-HHS appropriations bill, we urge
you to significantly increase funding for the Ending the HIV Epidemic
Initiative, as well as appropriate additional funds for core public
health programs that work to treat and prevent HIV and viral hepatitis
in the United States. These programs, many of which are a part of the
safety net health system, will be key tools in recovering from COVID-
19, and ensuring those most impacted by the COVID pandemic's economic
fallout can still access critical care.
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. A person living with HIV
on treatment can expect to live a near full life, and if they achieve
an undetectable viral load, are unable to pass HIV on to a partner. The
toolbox for HIV prevention is ever expanding, with pre-exposure
prophylaxis (PrEP) being the newest tool that couples with traditional
prevention techniques like condoms and syringe service programs.
Despite these advancements, new cases of HIV have been stagnant at
around 38,000 cases a year since 2013. Over the last year, COVID-19 has
severely impacted HIV prevention and treatment programs, many of which
have had to reduce services, suspend in-person testing, transition to
telehealth, and detail staff to COVID response. These programs have
been forced to innovate during COVID, and we hope some of the lessons
learned can be sustained after the pandemic has ended, such as
expansion of at-home HIV testing and increased utilization of
telemedicine for HIV treatment and PrEP expansion. It is extremely
important that additional funding goes to these programs this year so
that we can again start reducing new HIV infections while allowing
programs to refocus on core HIV prevention and treatment programs that
are vital to making progress against this epidemic.
Additionally, we believe that ending HIV is a racial justice issue.
Three quarters of new HIV infections are among people of color because
of racism and structural barriers in the healthcare system. To end HIV,
these barriers must be broken down, and we believe people living with
HIV and the communities they live in must be the drivers behind
eliminating racism in healthcare.
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 ten years.
In the last two years, your Committee provided $260 million and $404
million respectively for the EHE Initiative, which is run by the CDC,
the Health Resources and Services Administration (HRSA), and the
National Institutes of Health (NIH). The resources were 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 more than 10,000 new clients
being treated for HIV, nearly 865,000 HIV tests administered, and
63,000 new PrEP prescriptions for people at risk for HIV. 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 three of the EHE Initiative at the
following levels: $371 million for the CDC Division of HIV/AIDS
Prevention to conduct targeted testing, connection to treatment, and
robust surveillance; $212 million for the Ryan White HIV/AIDS Program
to increase access to high-quality HIV care and treatment; $152 million
for HRSA's Community Health Center program to provide prevention
services emphasizing PrEP; $16 million for NIH's Centers for AIDS
Research to provide best practices to guide the plan; and $27 million
for the Indian Health Service to provide HIV prevention, treatment,
education, and hepatitis C (HCV) elimination in Indian Country. In
order for jurisdictions to better plan for years four through ten of
the Initiative, we urge the Committee to work with HHS, OMB and the
White House Office of HIV/AIDS Policy to make public out-year funding
projections for appropriations needed to accomplish the goals of the
Initiative by 2030.
cdc hiv prevention
CDC's Division of HIV/AIDS Prevention focuses resources on those
populations and communities most affected by investing in high-impact
prevention. One in seven people living with HIV in the United States
are unaware of their status, so it is critical that HIV testing and
prevention programs are in place to help connect people to care. There
is no single way to prevent HIV, but jurisdictions use a combination of
effective evidence-based approaches including testing, linkage to care,
education, condoms, syringe service programs, and PrEP. We urge the
Subcommittee to fund CDC's HIV Prevention program at $1.293 billion,
which includes $100 million for school-based HIV prevention efforts and
$371 million for the Ending the HIV Epidemic Plan.
the ryan white hiv/aids program
The Ryan White HIV/AIDS Program provides medications, medical care,
and essential coverage completion services to almost half of all people
living with HIV in the United States, many of whom are uninsured or
underinsured. The Ryan White Program successfully engages individuals
in care and treatment, increases access to HIV medications, and helps
over 88 percent of clients achieve viral suppression (which is critical
for HIV prevention, because people who have achieved viral suppression
cannot transmit HIV to others). Increased funding is required in FY2022
because COVID-19 has strained and will continue to strain Ryan White
programs, which have had to respond to increased demand from people
living with HIV who lost their jobs and their health insurance because
of the pandemic.
The AIDS Institute requests that the Subcommittee fund the Ryan
White HIV/AIDS Program at a total of $2.776 billion in FY2022,
distributed in the following manner: Part A at $686.7 million; Part B
(Care) at $444.7 million; Part B (ADAP) at $943.3 million; Part C at
$225.1 million; Part D at $85 million; Part F/AETC at $35.5 million;
Part F/Dental at $18 million; and Part F/SPNS at $34 million; Ending
the HIV Epidemic Plan at $212 million.
minority aids initiative
As racial and ethnic minorities in the U.S. are disproportionately
impacted by HIV/AIDS, it is critical that the Subcommittee continue to
fund the Minority HIV/AIDS Fund and Minority AIDS programs at SAMHSA.
We urge the Subcommittee to appropriate $105 million for the Minority
HIV/AIDS Fund; and $160 million for SAMHSA's Minority AIDS Initiative
Program.
viral hepatitis in the u.s
There has been significant increase in the number of new cases of
hepatitis A (HAV), hepatitis B (HBV), and hepatitis C (HCV) in the U.S.
over the past decade, despite medical advances that make preventing and
treating viral hepatitis more effective. There are highly effective
vaccines for both HAV and HBV, yet cases of HAV have increased 1,300
percent since 2015 and the number of new cases of HBV have remained
stable for the past decade. There are several curative treatments for
HCV, yet the number of new HCV cases has increased by 484 percent over
the past decade with no signs of slowing. The increased incidence of
viral hepatitis is largely due to increased injection drug use related
to the opioid epidemic. Moreover, the CDC estimates that as many as
half of the people who are living with chronic HBV and HCV (400,000 and
1.2 million people respectively) may be unaware that they have
contracted the conditions. 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. We can eliminate viral hepatitis,
but doing so will require substantially increased investment in the
public health infrastructure for prevention, screening, and treatment.
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 poised to have 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 $120 million for the CDC's infectious
diseases and opioid epidemic efforts.
cdc viral hepatitis prevention
The CDC's Viral Hepatitis program funding level is only $39.5
million, which is not nearly sufficient to address the increasing scope
of the epidemic. In 2016, the agency suggested it would need 10 times
that amount annually to establish a comprehensive national program to
effectively combat the spread of viral hepatitis. This year, we request
that the Subcommittee appropriate $134 million to the CDC to address
the rise in viral hepatitis and combat the impact of the opioid crisis.
syringe service programs
Syringe service programs (SSPs) are a critical tool in the fight to
end the opioid epidemic and eliminate viral hepatitis. These important
public safety programs reduce the spread of infectious disease, prevent
overdose deaths, and connect clients to 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. The President's FY22 Budget Request and the House's
FY21 appropriations bill both removed the restrictions for the purchase
of sterile syringes.
public health infrastructure
Decades of chronic underfunding of public health infrastructure
programs have left the United States extremely vulnerable to public
health disasters, as evidenced by the untold physical and economic harm
COVID-19 has wrought on our nation, with more than 33 million Americans
sickened and over 600,000 deaths to date. Pandemics are a threat to our
nation's safety and health, and we urge the Committee to fund public
health programs with the same priority as traditional defense programs.
Billions in increased funding is needed annually to ensure that public
health programs are modernized, fully staffed, and prepared for public
health emergencies. Yearly appropriations have fallen far short of what
is needed to protect America's health, which has allowed emerging
threats like COVID-19 to wreak havoc.
The AIDS Institute thanks Chairwoman Murray for reintroducing the
Public Health Infrastructure Saves Lives Act (S.674), which would
create the Core Public Health Infrastructure Program withing the CDC.
We believe that this program, if fully funded, will start to rebuild
and bolster critical infrastructure needed to prepare for the next
public health threat. We thank the Committee and your colleagues for
significant increases in emergency funding approved during COVID-19,
but we also urge you to ensure that this funding is sustained to
forestall future emergencies. We urge the Committee Members and your
colleagues to support S. 674, and once signed into law, ensure that the
authorized programs are fully funded by your Committee.
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 Chairman Leahy, and Vice Chairman Shelby:
As the committee continues its important deliberations on the
Fiscal Year (FY) 2022 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 three 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% by 2030. Additionally, the HIV
National Strategic Plan: A Roadmap to End the Epidemic has been
developed. We urge Congress to capitalize on the expertise developed by
communities as part of the EHE Initiative so that we can improve and
expand the Initiative. Ending HIV by 2030 is possible, but resources
are needed to achieve this goal.
The COVID-19 pandemic has shown 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. Below are
detailed domestic HIV funding requests that we join our coalition
partners in the Federal AIDS Policy Partnership in urging committee to
include in the FY2022 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 two years, on a bipartisan basis, Congress has
appropriated additional funding for the Ending the HIV Epidemic
Initiative, which sets the goal of reducing new HIV infections by 50%
by 2025, and 90% by 2030. We ask Congress to increase funding in FY2022
for the Ending the HIV Epidemic Initiative by at least the amounts
listed below in the following operating divisions:
--CDC Division of HIV/AIDS Prevention for testing, linkage to care,
and prevention services, including pre-exposure prophylaxis
(PrEP) (+$196 m);
--HRSA Ryan White HIV/AIDS Program to expand comprehensive treatment
for people living with HIV (+$107 m);
--HRSA Community Health Centers to increase clinical access to
prevention services, particularly PrEP (+$34.7 m);
--The Indian Health Service (IHS) to address the combat the disparate
impact of HIV on American Indian/Alaska Native populations
(+$22 m); and
--NIH Centers for AIDS Research to expand research on implementation
science and best practices in HIV prevention and treatment.
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% 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 so that clients can access comprehensive treatment.
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 $2.768 billion in FY2022, an increase of $345 million over
FY2021, distributed in the following manner:
--Part A: $731.1 million
--Part B (Care): $437 million
--Part B (ADAP): $968.3 million
--Part C: $225.1 million
--Part D: $85 million
--Part F/AETC: $58 million
--Part F/Dental: $18 million
--Part F/SPNS: $34 million
--EHE Initiative: $212 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. HIV will not be eliminated unless we
focus resources on those most impacted.
The CDC's Division of HIV Prevention is the federal leader in
creating new and 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 work to address racial and geographic
health disparities. We urge you to fund the CDC Division of HIV
Prevention at $822.7 million in FY2022, an increase of $67 million over
FY2021. This is in addition to the $371 million for EHE Initiative work
within the Division.
CDC STD Prevention
Our nation faces a compounded public health crisis. STI rates are
at an all-time high for the sixth year in a row. STI data from 2018
shows that combined cases of chlamydia, gonorrhea, and syphilis
infections are nearing 2.4 million cases a year--up 30%. STIs have
life-changing and life-threatening consequences that include
infertility, cancer, ectopic pregnancy, pelvic inflammatory disease,
and transmission of HIV. More than 17 years of level funding for STI
programs has resulted in a more than 40% reduction in buying power. The
STI health infrastructure is part of the public health infrastructure
and the need to rebuild is higher than ever. While STI rates peak, the
same people who work to prevent the spread of sexually transmitted
diseases--contact tracers and disease intervention specialists--have
been redeployed to address the current COVID-19 pandemic. Consequently,
80% of sexual health screening clinics being forced to reduce hours or
shut down because of understaffing. We urge you to fund the CDC
Division of STD Prevention at $252.9 million to rebuild its
infrastructure and respond to the dramatic rise in STIs across the
country.
Congenital Syphilis is a fully preventable disease if women are
provided early, accessible prenatal care that includes STI testing.
Despite this, the transmission of congenital syphilis from mother to
child during birth increased by 185% between 2014-2018 with an increase
more than 40% between 2017 and 2018 alone. The result: a 22% increase
in newborn deaths. Twenty million dollars should be allocated to
activate a new congenital syphilis elimination initiative at the CDC
Division of STD Prevention (DSTDP)--with funds distributed to all STI-
funded health departments--to increase prenatal outreach and screenings
for congenital syphilis and postnatal follow up for both mothers and
babies to ensure that congenital syphilis is detected at the earliest
possible stage. We urge you to fund the CDC Division of STD Prevention
at $272.9 million in FY2022, an increase of $91.1 million over FY2021.
CDC Viral Hepatitis Prevention
The ongoing opioid crisis and increased injection drug has
drastically increased the number of new viral hepatitis cases in the
U.S. The CDC estimates that between 2010 and 2017 the country
experienced a 374% increase in new hepatitis C (HCV) infections, with
an estimated 44,600 new cases in 2017. The number of new cases of
hepatitis B (HBV) has also increased over the past several years, with
22,200 new cases in 2017, ending years of declining rates. Of the more
than 3.2 million people now living with HBV and/or HCV in the U.S., as
many as 65% are not aware of their infection.
The CDC's Division of Viral Hepatitis (DVH) remains the lead agency
combating viral hepatitis at the national level by providing important
information and funding to the states. The division is currently funded
at only $39.5 million. This is nowhere near the nearly $393 million CDC
estimates 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 and the Viral Hepatitis
National Strategic Plan for the United States: A Roadmap to Elimination
(2021--2025). However, only with significantly increased funding 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. We urge you to fund the CDC's
Division of Viral Hepatitis at $134 million in FY2022, an increase of
$94.5 million over FY2021.
CDC Infectious Diseases and Opioid Epidemic Funding
The FY2019 budget included new funding for the CDC to combat
infectious diseases commonly associated with injection drug use in
areas most impacted by the opioid crisis. The United States is
experiencing an ongoing overdose crisis and some experts have estimated
that the U.S. surpassed 100,000 deaths from opioid overdose in 2020, a
more than 40% increase from 2019 itself a record year. Outbreaks or
significant spikes in infections of viral hepatitis, as well as HIV, in
a short period of time among people who inject drugs continue to occur
throughout the country. Syringe Services Providers (SSPs) are first
responders to the opioid and infectious diseases crisis effectively
help prevent drug overdoses and new HIV and hepatitis infections. They
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, including
Substance Use Disorder treatment. This program, which is only funded at
$13 million, increases prevention, testing, and linkage to care efforts
to combat increasing new infections and is strongly needed to provide a
strong on the ground response to this crisis. These services are
urgently needed, and adequate funding would provide a critical down
payment for services needed to help stop the spread of opioid-related
infectious diseases. We urge you to fund the CDC's Infectious Diseases
and Opioid Epidemic program in FY2022 at the $120 million requested in
the president's FY2021 budget, an increase of $107 million over FY2021.
Syringe Services Programs
The Department of Health and Human Services has said 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 connect people to substance use treatment, HIV
and hepatitis testing, and other supportive services. These cost-
effective programs must be expanded, especially in areas hardest hit by
the opioid epidemic. SSPs have also been providing COVID-19 related
services to vulnerable populations during the pandemic. The FY2021
appropriations bill continued a harmful policy rider that restricts the
use of federal funds for the purchase of sterile syringes, which
negatively impacts the ability of state and local public health groups
from expanding SSPs. 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.
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. While
there have been consistent decreases in new HIV infections among
certain populations, HIV infections are not decreasing among Black and
Latinx gay and bisexual men.
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 FY2022, an increase of $49.6 million and $44
million over FY2021 levels, respectively. We also urge you to fund
Minority AIDS Initiative programs across HHS agencies at $610 million
in FY2022.
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 Vice President and Chief Advocacy
Officer, Carl Baloney, Jr., at [email protected].
Sincerely.
[This statement was submitted by Jesse Milan, Jr., President & CEO,
AIDS United.]
______
Prepared Statement of the Alzheimer's Association and Alzheimer's
Impact Movement
The Alzheimer's Association and Alzheimer's Impact Movement (AIM)
appreciate the opportunity to submit outside witness testimony on the
Fiscal Year (FY) 2022 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 $289
million increase for Alzheimer's research at the National Institutes of
Health (NIH) and $20 million for implementation of the Building Our
Largest Dementia (BOLD) Infrastructure for Alzheimer's Act (P.L. 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. AIM 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 that damages and
eventually destroys brain cells, leading to a loss of memory, thinking,
and other brain functions. Ultimately, Alzheimer's is fatal. We have
yet to celebrate the first survivor of this devastating disease.
In addition to the suffering caused by the disease, 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 $355 billion for health care,
long-term care, and hospice care in 2021. This does not include the
over $250 billion in unpaid caregiver costs. The U.S. taxpayer-funded
federal health care programs Medicare and Medicaid are expected to
cover about $239 billion, or 67 percent, of these costs this year.
While an estimated 6.2 million Americans age 65 and older are currently
living with Alzheimer's, nearly 13 million Americans will have
Alzheimer's by 2050 and costs will exceed $1.1 trillion (in 2021
dollars). Alzheimer's and other dementia threaten to bankrupt families,
businesses, and our health care system.
investing in alzheimer's treatments
The Food and Drug Administration (FDA) recently 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 is pivotal, while not a cure. This is the
first of a number of new treatments to come. We recognize the drug may
work differently for everyone who takes it, and may not work for some
individuals. Importantly, aducanumab was studied in and appropriate for
people living with early Alzheimer's dementia and mild cognitive
impairment (MCI) 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.
The recent 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 different 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 $289 million in Alzheimer's
research at NIH in FY2022 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 five 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 FY20, 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 FY21 will help fund additional public health
departments and expand the impact of this crucial work into more
communities across the country.
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 will work 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 leading a five-year clinical trial
to evaluate a two-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 full $20 million authorized in
the law for FY2022 to ensure the meaningful impact that Congress
intended. The Alzheimer's Association and AIM urge Congress to include
the full $20 million for the third year of BOLD's implementation at CDC
in FY2022. Activities supported by the requested $20 million in FY22
would enable CDC to award additional PHCOEs, focused on important
priorities such as Tribal Health and avoiding preventable
hospitalizations, and 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 $289
million for Alzheimer's research activities at NIH and $20 million for
full implementation of the BOLD Infrastructure for Alzheimer's Act at
CDC in FY 2022.
______
Prepared Statement of the Alzheimer's Foundation of America
On behalf of the Alzheimer's Foundation of America (AFA), a
national nonprofit that unites more than 2,000 member organizations in
the goal of providing support, services and education to individuals,
families and caregivers affected by Alzheimer's disease and related
dementias nationwide, I am submitting the following budget requests for
your consideration as you prepare fiscal year (FY) 2022 appropriations
levels for the federal budget.
For federal programs that impact those living with dementia and
their family caregivers, AFA recommends the following budget
allocations for FY '22:
--an additional $289 million for a total $3.4 billion for Alzheimer's
disease clinical research at the National Institutes of Health/
National Institute on Aging (NIH/NIA);
--$560 million to fund the Brain Research through Advancing
Innovative Neurotechnologies (BRAIN) Initiative, a trans-agency
effort to arm researchers with revolutionary tools to
fundamentally understand the neural circuits that underlie the
healthy and diseased brain;
--$46.1 billion (a $3.2 billion increase over FY '21) for total
spending at the NIH;
--support for President Biden's call for $6.5 billion to launch the
Advanced Research Projects Agency for Health (ARPA-H) at NIH;
--an additional $50 million to fund caregiver supports and services
provided by Older Americans' Act (OAA) programs administered by
the Administration for Community Living (ACL), including a $7.5
million increase for the Alzheimer's Disease Program for a
total expenditure of $35 million in FY '22; and
--$20.5 million to support BOLD Act initiatives, including a $500,000
increase for the Healthy Brain Initiative and $4 million for
fall prevention at the Centers for Disease Control and
Prevention (CDC).
National Institutes of Health/National Institute on Aging (NIH/NIA):
NIA sponsors and conducts the lion's share of federal aging-related
research, including research into Alzheimer's disease and related
dementias, and this pioneering science contributes significantly to the
improved care and quality of life of older adults. 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 lower cost of
care.
AFA is extremely grateful to the Subcommittee for recent increases
in federal funding for Alzheimer's disease research at NIH/NIA.
Additional resources for fighting Alzheimer's disease and related
dementias at NIH have greatly increased our chances that promising
research gets funded as we move closer to the goal of finding a cure or
disease-modifying treatment by 2025 as articulated in the National Plan
to Address Alzheimer's Disease.
Yet, meaningful treatment is still some ways off and basic science
into dementia--the type of research funded through NIH--remains vital
to finding a cure.
AFA asks the Subcommittee to build upon past progress and continue
making the battle against Alzheimer's disease a national priority. To
this end, AFA urges the Subcommittee to provide an additional $289
million, for a total of approximately $3.4 billion for Alzheimer's
disease clinical research at NIH in FY '22.
The BRAIN Initiative is a large-scale effort to accelerate
neuroscience research by equipping researchers with the tools and
insights necessary for treating a wide variety of brain disorders,
including Alzheimer's disease, schizophrenia, autism, epilepsy, and
traumatic brain injury. By mapping whole brains in action, the ability
to identify thousands of brain cells at a time and development of
innovative brain scanners, BRAIN Initiative research advances and tools
are needed to better understand the brain and cognitive functioning.
AFA is asking that $560 million be allocated to conduct BRAIN
Initiative research for FY '22.
AFA also urges the Subcommittee to budget at least $46.1 billion
for total NIH spending in FY '22, a $3.2 billion increase over the
NIH's program level funding in FY '21, as recommended by the Ad Hoc
Group for Medical Research. This funding level would allow for
meaningful growth above inflation in the base budget that would expand
NIH's capacity to support promising science in all disciplines. It also
would ensure that funding from the Innovation Account established in
the 21st Century Cures Act would supplement the agency's base budget,
as intended, through dedicated funding for specific programs.
AFA also supports the President's call for an additional $6.5
billion to launch the Advanced ARPA-H at NIH. ARPA-H would leverage
existing public sector basic science research programs along with
private sector efforts to accelerate development of new capabilities
for disease prevention, detection, and treatment and overcome
bottlenecks that have limited progress in areas such as Alzheimer's
disease. Any funding for ARPA-H, however, should not come from the
existing programming budget for NIH and should be considered an
additional appropriation to AFA's $46.1 billion request for all of NIH.
Centers for Disease Control and Prevention (CDC):
The Building Our Largest Dementia (BOLD) Infrastructure for
Alzheimer's Act requires CDC to establish Centers of Excellence in
Public Health Practice dedicated to promoting Alzheimer's disease
management and caregiving interventions, as well as educating the
public on Alzheimer's disease and brain health, will establish
Alzheimer's disease as a public health issue, increasing American
awareness and care training around the disease. To fund BOLD Act
initiatives at CDC, AFA is requesting $20 million in funding for FY
'22.
For older adults--especially for those living with dementia--falls
are common, costly, and often preventable. They represent the leading
cause of injury-related death among adults age 65 years of age and
older. CDC's National Center for Injury Prevention and Control
developed tools for clinicians and other health care partners to
identify and address falls and fall risk. AFA urges a continued
investment of $4 million to continue funding fall prevention programs
at CDC.
Administration for Community Living (ACL):
AFA is requesting a $50 million increase for vital ACL programming
impacting those living with dementia, including a $7.5 million increase
to the Alzheimer's Disease Program for a total funding of $35 million
in FY '22. In addition, AFA is requesting that the following amounts be
allocated to the following Older Americans' Act (OAA) programs
administered by ACL:
--National Family Caregiver Support Program (NFCSP): NFCSP provides
grants to states and territories, based on their share of the
population aged 70 and over, to fund a range of supportive
services that assist family and informal caregivers in caring
for those with dementia at home for as long as possible, thus
providing a more person-friendly and cost-effective approach to
institutionalization. AFA urges that an additional $24.5
million (for a total of $213.6 million) be allocated in FY '22
to support this important program.
--Lifespan Respite Care Program (LRCP): AFA urges the Subcommittee to
allocate a minimum of $10 million--a $2.9 million increase--to
LRCP in FY '22. LRCP provides competitive grants to state
agencies working with Aging and Disability Resource Centers and
non-profit state respite coalitions and organizations to make
quality respite care available and accessible to family
caregivers regardless of age or disability.
--Falls Prevention: In response to COVID, several community-based
fall prevention interventions, supported with ACL investments,
have transitioned to a digital environment in cases where they
can safely be implemented in the home. AFA, therefore, urges
$10 million, a $5 million increase over FY '21 funding, be
allocated so ACL can continue vital fall prevention activities
at ACL.
--Home Delivered Nutrition Program: This vital program provides
grants to states for nutrition services for older people,
including many living with dementia. In addition to healthy
meals, the programs provide a range of services including being
an important link to in-home and community-based supports such
as homemaker and home-health aide services, transportation,
home repair and modification, and falls prevention programs.
AFA calls for a $10.1 million increase, or $286.3 million, for
home delivered nutrition programs in FY '22.
AFA understands that during this time of crisis, Congress is
working hard to stem fallout of both the human and fiscal toll of
COVID-19. We are grateful for your work and urge that the Subcommittee
continues making services and supports available to our nation's most
vulnerable populations--including those older Americans with chronic
conditions like Alzheimer's disease--a priority. We know that through
determination, sacrifice and resilience, Americans will rise to the
challenge and take the necessary steps to mitigate the fallout of this
public health emergency.
AFA thanks the Subcommittee for the opportunity to present our
recommendations and looks forward to working with you and your staff
through the appropriations process. Please contact me at
[email protected] or Eric Sokol, AFA's senior vice president of
public policy, at [email protected], if you have any questions or
require further information.
Sincerely.
[This statement was submitted by Charles J. Fuschillo, Jr.,
President and CEO, Alzheimer's Foundation of America.]
______
Prepared Statement of the American Academy of Allergy,
Asthma & Immunology
Chairwoman Murray, Ranking Member Blunt, and Members of the
Subcommittee, the American Academy of Allergy, Asthma, & Immunology
(AAAAI) thanks you for the opportunity to submit written testimony on
the U.S. Department of Health and Human Services (HHS) Fiscal Year (FY)
2022 appropriations bill. AAAAI respectfully requests the subcommittee
to include $12.2 million in funding for the Consortium on Food Allergy
Research (CoFAR) within the National Institute of Allergy and
Infectious Disease (NIAID) at the National Institutes of Health (NIH).
In addition, we request report language reflecting the importance of
NIH engaging in trans-NIH research on food allergies. Also, the AAAAI
supports funding of $100 million for the National Healthcare Safety
Network which enables the Centers for Disease Control and Prevention
(CDC) to target prevention of healthcare acquired and antimicrobial
resistant infections and improve antibiotic prescribing.
Established in 1943, AAAAI is a professional organization with more
than 7,000 members in the United States, Canada, and 72 other
countries. This membership includes board certified allergist/
immunologists, other medical specialists, allied health and related
healthcare professionals--all with a special interest in the research
and treatment of patients with allergic and immunological diseases.
food allergies
Food allergies affect 32 million Americans, including 6 million
children. Each year, more than 200,000 Americans require emergency
medical care for allergic reactions to food--equivalent to one trip to
the emergency room every three minutes.
The Consortium on Food Allergy Research (CoFAR) was established by
the National Institutes of Health (NIH) within the National Institute
of Allergy and Infectious Disease (NIAID) in 2005. Over the following
16 years, CoFAR discovered genes associated with an increased risk for
peanut allergy and has also identified the most promising potential
treatments for egg and peanut immunotherapy, among many other
accomplishments. Breakthroughs like these, scaled across other major
food allergies, can significantly improve the quality of life for tens
of millions of Americans. Its annual $6.1 million budget is a
relatively small portion within NIH's almost $40 billion budget, yet
CoFAR has been able to achieve massive strides in the study of food
allergy prevention and treatment.
AAAAI enthusiastically supports an increase in funding for CoFAR of
$6.1 million, annually, bringing its yearly budget up to $12.2 million.
With its relatively low current level of funding, CoFAR has been able
to accomplish breakthroughs in the under-researched field of food
allergies. It is crucial that we continue investing at proportional
levels given the scale of this condition which impacts 10.8 percent of
the U.S. population.
AAAAI also requests that the Subcommittee's report accompanying the
FY22 Labor/HHS appropriation reflects the importance of trans-NIH
research on food allergies. AAAAI strongly supports the following NIAID
report language submitted by Senator Blumenthal that acknowledges the
groundbreaking work of CoFAR and encourages robust investment to expand
its research breadth and network.
Food Allergies.--The Committee recognizes the serious issue of food
allergies which affect approximately eight percent of children
and ten percent of adults in the U.S. The Committee commends
the ongoing work of NIAID in supporting a total of 17 clinical
sites for this critical research, including seven sites as part
of the Consortium of Food Allergy Research (CoFAR). The
Committee includes $12,200,000, an increase of $6,100,000, for
CoFAR to expand its clinical research network to add new
centers of excellence in food allergy clinical care and to
select such centers from those with a proven expertise in food
allergy research.
In addition to the AAAAI, the CoFAR funding request and report
language are supported by the American College of Allergy, Asthma &
Immunology; Allergy & Asthma Network; Asthma and Allergy Foundation of
America; Food Allergy & Anaphylaxis Connection Team; Food Allergy
Research and Education; and International FPIES Association.
antimicrobial resistance (amr) and penicillin allergy
The growing threat of antimicrobial resistance, combined with the
dwindling pipeline of novel antibiotic research, requires policies that
prevent inappropriate use of antibiotics. One of the primary ways to
combat this threat begins with penicillin--the most commonly reported
drug allergy. According to the CDC, approximately 10 percent of the
U.S. population report being allergic to penicillin, yet 9 out of 10
patients reporting a penicillin allergy are not truly allergic when
formally evaluated, such that fewer than one percent of the population
is truly allergic to penicillin. More recently, the CDC cited the
importance of correctly identifying if patients are penicillin-allergic
in decreasing the unnecessary use of broad-spectrum antibiotics in its
2018 update of Antibiotic Use in the United States: Progress and
Opportunities. The AAAAI strongly supports more widespread and routine
use of penicillin allergy evaluation for patients with a self-reported
history of allergy to penicillin. Evaluation can accurately identify
patients who, despite reporting a history of penicillin allergy, can
safely receive penicillin.
The AAAAI supports funding of $100 million for the National
Healthcare Safety Network which enables CDC to target prevention of
healthcare acquired and antimicrobial resistant infections and improve
antibiotic prescribing. The Antibiotic Resistance Solutions Initiative
will benefit from significant new resources to achieve the goals
outlined in the National Action Plan for Combating Antibiotic-Resistant
Bacteria, including strengthening antibiotic stewardship to promote
best practices for prescribing antibiotics such as penicillin.
AAAAI also wishes to express its appreciation to the subcommittee
for the inclusion of language regarding the importance of penicillin
allergy testing in the FY20 appropriations bill. The discovery of
penicillin opened the door to medical innovation allowing surgeries to
be performed, organs to be transplanted, as well as combat wounds and
burn victims to be treated. AAAAI encourages more widespread and
routine penicillin allergy evaluation for patients with a history of
allergy to penicillin or another beta-lactam drug (e.g., ampicillin or
amoxicillin). Penicillin allergy evaluation can accurately identify
patients who, despite reporting a history of penicillin allergy, can
safely receive penicillin. On behalf of the patients we serve, thank
you for your leadership in giving penicillin allergy testing the
attention it deserves.
Thank you for your consideration of these FY22 appropriations
requests. Please contact Sheila Heitzig, JD, MNM, CAE, AAAAI Director
of Practice and Policy, at [email protected] if you have any questions
or would like additional information.
______
Prepared Statement of the American Academy of 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 (FY) 2022 and beyond.
AAP urges all Members of Congress to put children first when
considering short and long-term federal spending decisions, and
supports funding levels for the following programs: $50 million for
Pediatric Subspecialty Loan Repayment (HRSA), $50 million for Firearm
Injury and Mortality Prevention Research (CDC/NIH), $10 million for
Pediatric Mental Health Care Access Grants (HRSA), $12 million for
implementation of Scarlett's Sunshine Act (CDC/HRSA), $22.334 million
for Emergency Medical Services for Children (HRSA), $280 million for
the National Center for Birth Defects and Developmental Disabilities
(CDC), $271.2 million for Global Immunizations (CDC), and $15 million
and report language for the Vaccine Awareness Campaign to Champion
Immunization Nationally and Enhance Safety (VACCINES) Act (CDC).
Pediatric Subspecialty Loan Repayment Program (HRSA):
FY 22 Request: $50 Million; FY 21 Level: Never Funded.--The AAP
requests $50 million in initial funding for the Pediatric Subspecialty
Loan Repayment Program, a Title VII health professions program to
improve access to care for children with special health care needs by
offering loan repayment to pediatric subspecialists and child mental
health providers who agree to serve in an underserved area. The United
States' supply of pediatric subspecialists is inadequate to meet
children's health needs. Many children must wait more than 3 months for
an appointment with a pediatric subspecialist, and approximately 1 in 3
children must travel 40 miles or more to receive care from a
pediatrician certified in certain subspecialties such as developmental
behavioral pediatrics. 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%
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 22 Request: $50 Million Total; FY 21 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 FY 21. In
the midst of the COVID-19 pandemic, communities across the U.S.
continue to suffer from the public health crisis of firearm-related
injuries and deaths with early data showing 2020 being a record-
breaking year for gun violence, injuries, and deaths. A public health
approach to firearm violence prevention is urgently needed to promote
health equity and address the disproportionate burden of this epidemic
on communities of color. The foundation of this approach is rigorous
research that can accurately quantify and describe the facets of an
issue and identify opportunities for reducing its related morbidity and
mortality. The initial investments in FY20 and FY21 are important, but
increased funding is still needed to overcome the decades-long lack of
federal funding that set back our nation's response to the public
health issue of firearm-related morbidity and mortality. Over time,
additional funding can generate research into important issues such as
the best ways to prevent unintended firearm injuries and fatalities
among women and children; the most effective methods to prevent
firearm-related suicides; the measures that can best prevent the next
shooting at a school or public place; and numerous other vital public
health questions. Continued and expanded investments are essential to
the success of this important work.
Pediatric Mental Health Care Access Grants (HRSA):
FY 22 Request: $10 Million; FY 21 Level: $10 Million.--The AAP
appreciates the additional funds included in the American Rescue Plan
for the Pediatric Mental Health Care Access Grants, in recognition of
the impact of COVID-19 on child and adolescent mental health, and urges
Congress to continue providing $10 million for FY 22 appropriations.
This program supports the development of new statewide or regional
pediatric mental health care telehealth access programs, as well as the
improvement of already existing programs. Research shows pervasive
shortages of child and adolescent mental/behavioral health specialists
throughout the U.S. Integrating mental health and primary care has been
shown to substantially expand access to mental health care, improve
health and functional outcomes, increase satisfaction with care, and
achieve costs savings.
Activities Authorized under Scarlett's Sunshine Act (CDC/HRSA):
FY 22 Request: $12 Million; FY 21: Level: N/A.--The AAP urges
Congress to provide first-time appropriations of $12 million to
implement the Scarlett's Sunshine Act. Little is known about the
tragic, sudden and unexpected deaths of young children because of
variations in investigations and death certifications. Enacted in
December 2020, this law will help states better understand sudden
unexpected infant death and sudden unexpected death in childhood,
facilitate data collection and analysis to improve prevention, and
support grieving families. Funds should support work at both CDC and
HRSA's Maternal Child Health Bureau given their complementary efforts
on this issue.
Emergency Medical Services for Children (HRSA):
FY 2022 Request: $22.334 Million; FY 21 Level: $22.334 Million.--
The AAP urges the committee to maintain $22.334 million in funding for
the Emergency Medical Services for Children (EMSC) Program in FY 22.
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.
National Center for Birth Defects and Developmental Disabilities (CDC):
FY 22 Request: $280 Million; FY 21 Level: $167.8 Million.--The AAP
requests $280 million for FY 22 for the National Center for Birth
Defects and Developmental Disabilities (NCBDDD), including $100 million
for Surveillance for Emerging Threats to Mothers and Babies (SET-NET).
This would allow the program to scale nationally and serve as the
nationwide preparedness and response network the United States needs to
protect pregnant individuals and infants from emerging public health
threats. 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.
Global Immunization--Polio and Measles/Other (CDC):
FY 22 Request: $271.2 Million ($176 Million for Polio and $50
Million for Measles/Other); FY 21 Level: $226 Million ($176 Million for
Polio and $50 million for Measles/Other).--Vaccines are one of the most
cost-effective and successful public health solutions available. The
CDC provides countries with technical assistance and disease
surveillance support, with a focus on eradicating polio, reducing
measles deaths, and strengthening routine vaccine delivery. Global
mortality attributed to measles declined by 79% between 2000 and 2015
thanks to expanded immunization, saving an estimated 20.3 million
lives. Unfortunately, the gains from global immunization are in
jeopardy. During the COVID-19 pandemic, many countries diverted
resources set aside for polio and routine immunizations to fight the
pandemic. To finance immunization gaps in countries and recover from
pandemic-related disruptions requires an additional $255 million over
the next three years. Failing to close these gaps will leave millions
of children at risk and will compromise U.S. global health security due
to increased possibility of importing highly infectious diseases like
measles into the U.S.
Activities Authorized under the VACCINES Act (CDC):
FY 22 Request: $15 Million; FY 21 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. We urge Congress to include $15 million
authorized by the VACCINES Act for CDC to research vaccine hesitancy
and establish an evidence-based public awareness campaign to help
improve vaccination rates across the lifespan. We also urge Congress to
request a report on the progress of these activities at the CDC.
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 2022 and beyond. If we may be of
further assistance, please contact the AAP Department of Federal
Affairs at [email protected]. Thank you for your consideration.
[This statement was submitted by Lee Savio Beers, MD, FAAP,
President,
American Academy of Pediatrics.]
______
Prepared Statement of the American Alliance of Museums
Chairwoman Murray, Ranking Member Blunt, and members of the
subcommittee, thank you for the opportunity to submit this testimony.
My name is Laura Lott, and I am President and CEO of the American
Alliance of Museums (AAM). I urge you to provide the Office of Museum
Services (OMS) within the Institute of Museum and Library Services
(IMLS) with $80 million for fiscal year (FY) 2022, an increase of $39.5
million. We request that $2.5 million of this increase be directed to
explore establishing, and to fund projects related to, 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, in addition to the agency's current critical direct grants to
museums.
AAM--representing more than 35,000 individual museum professionals
and volunteers, museums of all types, and corporate partners serving
the museum field--stands for the broad scope of the museum community.
I want to express the museum field's gratitude for the $40.5
million in funding for OMS in FY 2021, and we applaud the bipartisan
group of 41 Senators who recently wrote to you in support of FY 2022
OMS funding. We also applaud the President's budget proposal for
additional funding for OMS for the grants program authorized by the
African American History and Culture Act and the grants program
authorized by the National Museum of the American Latino Act as steps
in the right direction. OMS is a vital investment in protecting our
nation's cultural treasures, educating students and lifelong learners
alike, and bolstering local economies. During the COVID-19 pandemic,
OMS has provided critical leadership to the museum community through
its CARES Act grants. For example, 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.
Through the IMLS CARES Act Grants to Museums and Libraries, IMLS
awarded $13.8 million to 68 museums and libraries to support their
response to the coronavirus pandemic. IMLS received 1088 applications
from museums but was only able to fund 39 awards, fewer than 4 percent
of the applications, for a total of $8.28 million--far below the $261.5
million requested. Unfortunately, none or very little of the $200
million allocated to IMLS in the American Rescue Plan is expected to be
awarded to museums.
Museums are a robust and diverse business sector, including African
American museums, aquariums, arboreta, art museums, botanic gardens,
children's museums, culturally-specific museums, historic sites,
historical societies, history museums, maritime museums, military
museums, natural history museums, planetariums, presidential libraries,
public gardens, railway museums, science and technology centers, and
zoos.
Museums are economic engines and job creators: According to Museums
as Economic Engines: A National Report, pre-pandemic U.S. museums
supported more than 726,000 jobs and contributed $50 billion to the
U.S. economy per year, including significant impact on individual
states. For example, the total financial impact that museums have on
the economy in the state of Washington is $1.01 billion, supporting
14,145 jobs. For Missouri it is a $852 million impact, including 13,653
jobs. Nationally, museums spend more than $2 billion yearly on
education activities and the typical museum devotes 75% of its
education budget to K-12 students.
IMLS is the primary federal agency responsible for helping museums
connect people to information and ideas. OMS supports all types of
museums--from art museums to zoos--by awarding grants that help them
better serve their communities. OMS awards grants in every state to
help museums digitize, enhance, and preserve collections; provide
teacher professional development; and create innovative, cross-
cultural, and multi-disciplinary programs and exhibits for schools and
the public. Congress reauthorized IMLS at the end of 2018, with wide
bipartisan support. OMS grants to museums are highly competitive and
decided through a rigorous peer-review process. In addition to the
dollar-for-dollar match generally required of museums, grants often
spur more giving by private foundations and individual donors.
There is high demand for funding from OMS. In FY 2020 OMS received
784 applications requesting nearly $146 million, but current funding
has allowed the agency to fund only a small fraction of the highly
rated grant applications it receives. $80 million would allow OMS to
double its grant capacity for museums, funds that museums will need to
help recover from the pandemic and continue to serve their communities.
This substantial funding increase would still be greatly shy of the
high demand of $146 million in highly rated grant applications. A
Grants to States program administered by OMS, in addition to the
agency's current direct grants to museums, would merge federal
priorities with state-defined needs, expand the reach of museums, and
increase their ability to serve their communities, address underserved
populations, and meet the needs of the current and future museum
workforce.
Museums are vital to our nation's recovery from this pandemic, and
after sudden and long-term closures, they will require financial
assistance to reopen, maintain their staffs, provide educational
programs to communities, and assist in rebuilding local tourism
economies. PPP 1 and PPP 2, and Shuttered Venue Operators Grants
(limited to museums with theatres with fixed seating) have and will
provide a critical lifeline for many museums. But the museum field will
need robust ongoing support from IMLS, especially as not all museums
were eligible for pandemic relief funds. According to a report by
McKinsey and Company, the arts, entertainment, and recreation sectors
will not fully recover from this public health crisis and muted economy
until 2025.
Recent survey data confirmed that the dire economic harm to museums
caused by the COVID-19 pandemic will result in a long road to recovery
for the field. Three-quarters of museums (76 percent) report that their
operating income fell an average of 40 percent in 2020 while their
doors were closed to the public for an average of 28 weeks due to the
pandemic. Museums have largely been unable to offset losses by cutting
expenditures. Fifteen percent (the equivalent of more than 5,000 US
museums) confirmed there was a ``significant risk of permanent
closure'' or they ``didn't know'' if they would survive the next six
months absent additional financial relief. Nearly half (46 percent) of
museums surveyed report that their total staff size has decreased by an
average of 29 percent compared with pre-pandemic levels. Only 44
percent of all respondents plan to rehire or increase their staff size
in the coming year. Pre-pandemic museums supported 726,000 jobs. Fifty-
nine percent of responding museums were forced to cut back on
education, programming, and other public services due to budget
shortfalls and/or staff reductions during the pandemic. Thirty-nine
percent of responding museums require investments in their building,
HVAC equipment, and other infrastructure to improve energy efficiency
and reduce the environmental impact of their operations. The average
anticipated cost of these improvements is $668,000 per museum.
Despite economic distress, museums have been filling critical gaps
in our communities. During the pandemic, museum professionals--severely
impacted by the pandemic themselves-stepped up by serving the needs of
their communities. They are addressing education gaps and contributing
to the ongoing education of our country's children by providing free
lesson plans, online learning opportunities, and drop-off learning kits
to teachers and families. Museums are using their outdoor spaces to
grow and donate produce to area food banks and are maintaining these
spaces for individuals to safely relax, enjoy nature, and recover from
the mental health impacts of social isolation. They have donated their
PPE and scientific equipment to fight COVID-19, and provided access to
child care and meals to families of health care workers and first
responders. In the midst of financial distress, they are even raising
funds for community relief and providing reliable information on COVID-
19 and vaccinations, some even serving as vaccination sites themselves.
Museums are pivotal to our nation's ability to manage through the
pandemic and recover from it as our nation opens back up.
Here are just a few examples of how OMS helps museums better serve
their communities:
In 2021, the Suquamish Indian Tribe of the Port Madison Reservation
in Washington was awarded a $85,400 Native American/Native Hawaiian
Museum Services grant to update an oral history project conducted from
1981-83 that has guided the development of the Suquamish Museum for
over 30 years. The project will engage the 78 Suquamish elders who are
70 years of age and older to document their biographical, cultural, and
personal knowledge for use in more contemporary programming and museum
exhibits. Although the tribe recognized the need to gather oral
histories during a retreat in 2018, the COVID-19 pandemic not only
increased the sense of urgency but provided time to consider a plan for
the project. Collecting oral histories of experiences in the more
recent past will guide long range planning and help the museum focus
its collections acquisitions for the next foreseeable decades.
In 2020, the Seattle Art Museum in Washington was awarded a
$216,970 Museums for America grant to expand its early learner
initiative known as Artful Beginnings to create increased opportunities
for hands-on arts learning and engagement for children ages 2 through
6, their caregivers, and educators. The focus is on three core Artful
Beginnings programs: Tiny Tots Workshops and Family Fun Storytime, Art
Adventures, and an art-based outdoor preschool curriculum with Tiny
Trees. The museum's three locations--as well as community partner
facilities in South Seattle and South King County--will host the
programs. Programming will focus on engaging traditionally underserved
and lower-income audiences. The project underscores the museum's
commitment to equity and inclusion and will work to engage all
audiences more deeply.
In 2020, Port Townsend Marine Science Society in Washington was
awarded a $49,613 Program Inspire! Grants for Small Museums grant to
complete an exhibition master plan as part of a larger facility
improvement project. The expanded and renovated facility will create an
accessible, unified, cohesive exhibition experience with strong content
linkages and seamless indoor-outdoor integration that gives the feeling
of a journey into the Salish Sea. The process of developing the
exhibition master plan will involve formative evaluation, including
site visits, surveys, focus groups, and consultations with
professionals. Representatives of key stakeholder groups, including
educators and students, volunteers, marine conservation professionals,
and other Salish Sea environmental organizations will provide input on
the plan concept and exhibition content. The center intends to inspire
responsible stewardship of global oceans through the development of
immersive, informative content.
In 2020, the Walt Disney Hometown Museum in Marceline, Missouri,
was awarded a $38,240 Program Inspire! Grants for Small Museums grant
to expand its education and professional development programs for rural
educators. The initiative is the result of a collaborative partnership
that includes museum staff, K-16 educators, and others from the local
community. Educators will have the opportunity to participate in an
immersive learning workshop program where they will experience and
explore place-based learning opportunities alongside guided
instructional planning. The initiative will solidify bonds between the
museum and the community, as educators and museum personnel collaborate
to strengthen their understanding of how local culture connects to
learning.
In 2020, the Missouri Botanical Garden in Saint Louis, Missouri,
was awarded a $202,220 Museums for America grant to create a Butterfly
House Entomology Lab to serve as a functional space for staff and
volunteers to properly care for their invertebrate animal collection
while providing guests an interactive experience. This exhibition will
promote learning experiences focused on the butterfly life cycle,
invertebrate animal conservation, and the field of entomology. The
project also will include the addition of digital components such as
monitors that highlight the characteristics of each display species and
their region of origin. The addition of technology also will allow
virtual field trips to the Butterfly House Entomology Lab.
In closing, I highlight recent national public opinion polling that
shows that 95% of voters would approve of lawmakers who acted to
support museums and 96% want federal funding for museums to be
maintained or increased. Museums have a profound positive impact on
society.
If I can provide any additional information, I would be delighted
to do so. Thank you again for the opportunity to submit this testimony.
[This statement was submitted by Laura L. Lott, President/CEO,
American
Alliance of Museums.]
______
Prepared Statement of the American Association for Cancer Research
Chair Murray, Ranking Member Blunt, and members of the subcommittee
and staff, thank you for the opportunity to submit testimony. I am Dr.
David Tuveson, Director of the Cold Spring Harbor Laboratory Cancer
Center and Chief Scientist for the Lustgarten Foundation, the largest
pancreatic cancer research philanthropic organization. I am submitting
testimony as President of the American Association for Cancer Research
(AACR). On behalf of the AACR's 48,000 members, I ask for your support
for at least $46.1 billion in FY 2022 funding for the National
Institutes of Health (NIH), and $7.6 billion for the National Cancer
Institute (NCI).
We are in an era of unprecedented progress against cancer,
including advances in immunotherapies and targeted anti-cancer
therapies that led to spectacular decreases in cancer mortality. Thanks
to investments at the NCI, we have new tools at our disposal that could
only be dreamed of decades ago to maximize advances in early diagnosis
of many types of cancer and offer highly effective treatments that
improve health outcomes and reduce health disparities. Additionally,
the funding that NCI provides to the NCI-designated cancer centers that
are located all throughout the country is supporting pioneering new
research, serving patients in their communities, and training the next
generation of cancer scientists.
There are so many breakthroughs within our grasp, but to achieve
them, we need federal investments to keep up with demand on basic
research for cancer.
Since FY 2015, thanks to your leadership, NIH funding has increased
by nearly 42%. But due to other funding needs at NIH, including worthy
initiatives that take away from the top line, and a nearly 50% increase
in applications at NCI since 2013, the funding increases have not kept
up with demand.
Even with the significant funding you have provided, the percent of
NCI grant applications that are funded, referred to as the success
rate, is among the lowest of all institutes at NIH. In FY 2020, the
NIH-wide success rate for competing research project grants, or RPGs,
was nearly 21%. For NCI, it was only 12.8%, and that's the highest
NCI's success rate has been in six years.
NCI has been stretching dollars to fund more grants. NCI Director,
Dr. Sharpless, released his 15-by-25 milestone, an effort to increase
the number of R01 grants funded until it reaches the 15th percentile in
2025. The AACR strongly supports this important mission, but to achieve
the goal of funding more meritorious research, more funding will be
needed.
While the success rate of an RPG at NHLBI is 22.2%, and NIDDK is
23%, NIAID is 23.9%, and the National Institute on Aging is 25.8%,
NCI's rate of 12.8% is not sustainable to meet our pledge to apply new
cancer science and medicine towards improving patient outcomes. With
the low success rate, I worry the best and the brightest, in particular
early-stage researchers, will choose other career paths. The United
States cannot lead the world in cancer discoveries if the NCI success
rate is so low that researchers choose another field.
Thanks to your leadership, language was included in the last two
explanatory statements to prioritize competing grants and sustain
commitments to continuing grants. I humbly ask you to continue these
efforts in FY 2022 and provide funding to meet Dr. Sharpless' goal so
the cancer research community can accelerate the path to discoveries
and save lives.
I know cancer is personal for you, as it is for me. Thank you for
this opportunity and for your commitment to bringing us closer to our
mutual goal of conquering cancer.
[This statement was submitted by David A. Tuveson, MD, PhD, FAACR,
President, American Association for Cancer Research.]
______
Prepared Statement of the American Association for Clinical Chemistry
The American Association for Clinical Chemistry (AACC) welcomes the
opportunity to provide testimony to the Senate Appropriations
Subcommittee on Labor, Health & Human Services, and Education regarding
our nation's fiscal year (FY) 2022 budget priorities. AACC and its
partners are urging the subcommittee to support two initiatives vital
to improving the quality and efficacy of healthcare in the United
States:
--Improving Pediatric Reference Intervals--$10 million for the
Centers for Disease Control and Prevention, Division of
Laboratory Services, Environmental Health Laboratory to improve
the quality of pediatric reference intervals used by health
practitioners to diagnose, monitor, and treat children.
--Harmonizing Clinical Laboratory Test Results--an additional $7.2
million ($9.2 million in total) for the Centers for Disease
Control and Prevention, Division of Laboratory Services,
Environmental Health Laboratory to continue its ongoing efforts
to harmonize the reporting of clinical laboratory test results,
which is the vital to providing better, more consistent
healthcare in the United States.
improving pediatric reference intervals
AACC, the American Academy of Pediatrics, the Children's Hospitals
Association, and 30 other organizations have written to the
subcommittee urging additional funding for the Centers for Disease
Control and Prevention (CDC) to improve the quality of pediatric
reference intervals (PRIs)--the range of numeric values expected in a
healthy child--available to health practitioners to care for their
young patients.
When making a diagnosis, the healthcare professional considers a
laboratory test value within the context of a reference interval. If
the test result falls outside of the defined reference interval for a
healthy child--either higher or lower--the practitioner may order a
medical intervention to address a health condition or change an ongoing
treatment protocol. If the diagnosis or treatment change is incorrect
for any reason, including an inaccurate reference interval, it could
result in patient harm. Therefore, it is critical that the range of
values used by practitioners to interpret test results are accurate.
Whereas the reference intervals for adults are generally reliable,
there is considerable inconsistency and large gaps in the ranges
available for children. Healthcare practitioners need reference
intervals reflective of healthy children at each unique stage of
physical development from birth through adolescence to adulthood. In
addition, the intervals must also take into consideration any
variations due to biological factors, such as ethnicity and gender.
Accurate and actionable PRIs are particularly important for our
youngest patients, who are often unable to verbally communicate their
symptoms. Unfortunately, most laboratories are unable to obtain enough
samples from a diverse, healthy population of children to develop their
own reference intervals.
Congress recognized the importance of this issue when in the
accompanying report language to the Further Consolidated Appropriations
Act of 2020 it requested CDC to develop and submit a plan for improving
PRIs. The agency outlined its plan in the Department of Health and
Human Services fiscal year 2021 congressional justification to
Congress. The plan calls for the CDC to employ its existing
infrastructure to initiate and advance this vital work. According to
CDC, it can:
--collect clinical samples through its National Health and Nutrition
Examination Survey (NHANES), which has the organization and
expertise to collect specimens from healthy children; and
--utilize its Environmental Health Laboratory (EHL) to generate the
reference intervals for children and disseminate the
information to clinical laboratories. EHL has developed
reference intervals in the past.
AACC and its partners support providing CDC with an additional $10
million to improve the quality of PRIs critical to caring for our
nation's children.
harmonizing clinical laboratory test results
Another issue that AACC and its allies request your assistance with
is the harmonization of clinical laboratory test results. Laboratory
test methods provide accurate test results, but different methods
generate different numeric values. With different methods in use across
the healthcare system, lack of harmonization makes it difficult to
develop widely applicable clinical guidelines or performance measures.
It also complicates data aggregation, which limits the development of
tools to better inform health decision-making.
Tests that are harmonized (or standardized) provide the same
numeric value for a condition regardless of the method or instrument
used or the setting where the tests are performed. An early example of
harmonization is cholesterol, which is widely utilized by the medical
community to diagnose heart disease. A 2011 study published in
Preventing Chronic Disease reports that early drug intervention based
on cholesterol levels saved the health system $338 million to $7.6
billion annually between 1980--2000.\1\ Harmonization can improve
patient care while also saving money.
---------------------------------------------------------------------------
\1\ Hoerger TJ, Wittenborn JS, Young W. A cost-benefit analysis of
lipid standardization in the United States. Preventing Chronic Disease
2011; 8: A136.
---------------------------------------------------------------------------
In recent years, Congress has supported the expansion of CDC's
harmonization efforts, resulting in new activities to improve the
detection and management of hormone disorders, kidney disease, cancer,
and heart disease. With additional funding, the agency will be able to
expand its harmonization activities to develop materials for non-
traditional biomarkers, such as apolipoproteins, and the assessment of
point of care testing devices that are increasingly being used by
healthcare providers and patients.
AACC and its partners respectfully request that the subcommittee
provide an additional $7.2 million ($9.2 million in total) for the CDC
to continue and advance its harmonization activities. Congress has
provided $2 million annually for this program since FY18.
AACC is a global scientific and medical professional organization
dedicated to clinical laboratory science and its application to
healthcare. We look forward to working with the subcommittee on these
most important issues as it goes through the FY22 budget process. If
you have any questions, please email Vince Stine, PhD, AACC's Senior
Director of Government and Global Affairs, at [email protected].
[This statement was submitted by David Grenache, PhD, D(ABCC),
President, American Association for Clinical Chemistry.]
______
Prepared Statement of the American Association for Dental Research
On behalf of the American Association for Dental Research (AADR), I
am pleased to submit testimony describing AADR's funding requests for
fiscal year (FY) 2022. I currently serve as the chair of the Board of
Directors and president of the Association. I am a professor in the
Department of Diagnostic and Biological Sciences at the University of
Minnesota School of Dentistry, where I also serve as the director
emeritus of the Minnesota Craniofacial Research Training Program
(MinnCResT).
For FY 2022, the American Association for Dental Research--along
with our colleagues in the oral health community--is seeking at least
$520 million for the National Institute of Dental and Craniofacial
Research (NIDCR) and at least $46.111 billion for all of the Institutes
and Centers at the National Institutes of Health (NIH). Funding at
these recommended levels will allow for the entities' base budgets to
keep pace with the biomedical research and development price index
(BRDPI) and provide meaningful growth of 5%.
As our nation continues to respond to the global COVID-19 pandemic,
we are reminded of the importance of the federal investment in science,
and in particular, biomedical research. AADR is grateful to Congress
for consistently prioritizing this research at NIH by providing steady
and meaningful funding increases, which will be more important than
ever to carry forward in the wake of the pandemic. While we recognize
there will be funding challenges in FY 2022 given the tremendous
resources allocated to COVID-19 relief, we cannot afford to underfund
our nation's research agencies now. Underfunding will leave us ill-
equipped to complete our exit from the current pandemic, deal with
future pandemics, and risk losing the progress that has been made by
congressional investment in biomedical research.
The requested 5% growth above BRDPI would provide critical support
for these research agencies, which have been among the many enterprises
negatively impacted by this public health crisis. The ongoing pandemic
caused closures of university campuses and forced laboratories to scale
back or halt research projects. It also required research agencies to
shift existing resources and funding to coronavirus-related research at
the expense of other important scientific inquiries about health and
disease.
NIDCR--the largest institution dedicated exclusively to research to
improve dental, oral and craniofacial (skull and face) health--is one
the NIH Institutes and Centers that has prioritized COVID-19 research.
To date, NIDCR has funded approximately $3.9 million of immediate and
high impact research to protect and ensure the safety of personnel and
patients in dental practices during the COVID-19 pandemic. The
Institute will soon release a second round of funding related to COVID-
19.\1\ Funding for NIDCR COVID-19 research is critical to the nation's
public health, supporting work that includes the use of personal
protective equipment (PPE) in dental settings, aerosol and droplet
transmission in dental settings, the infection of salivary glands and
oral tissues by SARS-CoV-,\2\ and the use of biosensors to detect SARS-
CoV-2 in saliva.
This important research agenda with broad public health impact
notwithstanding, NIDCR was not included among the NIH Institutes and
Centers to receive targeted supplemental funding in COVID-19 relief
legislation--nor has the annual investment in NIDCR kept pace with the
overall funding increases provided to NIH over the past several years.
Funding of at least $520 million in FY 2022 would help bring NIDCR
funding into alignment with the overall NIH request and allow NIDCR to
build on its myriad successes in its mission to improve dental, oral
and craniofacial health.
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. Oral health can
affect activities that may be taken for granted: the ability to eat,
drink, swallow, smile, speak, and maintain proper nutrition. The oral
cavity also serves as a window into potential 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.
Coronavirus research shows that the virus can infect more than the
upper airways and lungs, but also cells in other parts of the body. In
fact, recent NIDCR-supported research has also shown that the novel
coronavirus can infect cells in the mouth. As the study's authors
explain.\2\ :
``The potential of the virus to infect multiple areas of the body
might help explain the wide-ranging symptoms experienced by COVID-19
patients, including oral symptoms such as taste loss, dry mouth and
blistering. Moreover, the findings point to the possibility that the
mouth plays a role in transmitting SARS-CoV-2 to the lungs or digestive
system via saliva laden with virus from infected oral cells.''
According to NIDCR's press release on the study, this research is
contributing to our understanding of COVID-19, including oral
transmission, and could inform interventions to help combat the virus
and alleviate the associated oral symptoms. Indeed, this seminal
research may have important implications to explain why super-spreader
events occur in places where people sing, speak loudly, or party.
Dental, oral and craniofacial research presents vast research
opportunities, and we know NIDCR will continue to be the key player in
advancing our understanding of the role of the mouth and oral tissues
in many scientific frontiers going forward. One path to highlighting
the Institute's work and the future of this research in the United
States is through the U.S. Surgeon General's Report on Oral Health, a
critical update to the seminal ``Oral Health in America'' report from
July 2000. The report--originally set to be released in the fall of
2020--will document the progress in the improvement of oral health
since 2000, provide insight into issues currently affecting oral
health, and identify opportunities and challenges that have emerged
over the past 20 years. The 2000 report shifted perspectives among the
public and policymakers by showing that oral health goes beyond healthy
teeth and gums and that it is essential to our general health and well-
being. We believe the 2020 report will also have a significant impact,
and we have encouraged the administration to swiftly review and release
the report. The long-awaited report is a critical public health
document and is essential to moving our nation's health forward.
In addition to the important work of NIDCR, AADR recognizes that
federal research and public health efforts work in concert and that
success in one area can benefit another. Therefore, we encourage
Congress--in addition to supporting NIH and NIDCR in FY 2022, to
support the full breadth of federal agencies supporting oral health.
Complementing our NIDCR and NIH requests, we urge you to provide $30
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, at least $500 million for the
Agency for Healthcare Research and Quality (AHRQ), and at least $200
million for the National Center for Health Statistics (NCHS).
The COVID-19 crisis shook our nation and reminded us of the
critical role biomedical and public health research play in our
society. Over the course of 2020 and 2021, we saw how the research
enterprise can safeguard public health, national security and economic
growth. We urge Congress to continue to prioritize biomedical research,
including dental, oral and craniofacial research in FY 2022 so our
nation's citizens can continue to enjoy the benefits of state-of-the-
art, world-leading health care.
We appreciate the opportunity to submit this testimony and thank
the Subcommittee for considering our request of at least $520 million
in funding for NICDR and at least $46.111 billion for the Institutes
and Centers at NIH. AADR stands ready to assist the Congress in any way
we can and to answer any questions you may have.
---------------------------------------------------------------------------
\1\ National Advisory Dental and Craniofacial Research Council--
January 2021. National Institutes of Health, 2021. https://
videocast.nih.gov/watch=38984.
\2\ Scientists Find Evidence that Novel Coronavirus Infects the
Mouth's Cells. Press Release, NIDCR. https://www.nidcr.nih.gov/news-
events/nidcr-news/2021/scientists-find-evidence-novel-coronavirus-
infects-mouths-cells; Huang, N., Perez, P., Kato, T. et al. SARS-CoV-2
infection of the oral cavity and saliva. Nat Med 27, 892-903 (2021).
https://doi.org/10.1038/s41591-021-01296-8.
[This statement was submitted by Mark C. Herzberg, D.D.S., Ph.D.,
President, American Association for Dental Research.]
______
Prepared Statement of the American Association of Colleges of Nursing
strengthening the current and future nursing workforce
On behalf of the American Association of Colleges of Nursing
(AACN), we want 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 nearly 840 schools
of nursing at private and public universities, who educate more than
580,000 students and employ more than 52,000 faculty.\1\ Collectively,
these institutions play a critical role in protecting the health of our
nation by graduating registered nurses (RN), advanced practice
registered nurses (APRN), educators, researchers, and other frontline
providers. As we work to combat current public health challenges, such
as COVID-19, and prepare for the future, ensuring a robust supply of
nursing professionals requires a strong and sustained federal
investment. For Fiscal Year (FY) 2022, AACN respectfully requests that
you provide bold 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 $199.755
million for the National Institute of Nursing Research (NINR), which
was included in the President's FY 2022 Budget.
---------------------------------------------------------------------------
\1\ American Association of Colleges of Nursing. (2021) Who We Are.
Retrieved from: https://www.aacnnursing.org/About-AACN/Who-We-Are.
---------------------------------------------------------------------------
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 the COVID-19 public health emergency. Even prior to
COVID-19, our nation was in need of additional nurses. This demand is
only expected to grow as we continue to combat the pandemic and address
the healthcare needs of all patients, including those in rural and
underserved areas. In fact, the Bureau of Labor Statistics' outlook for
RN workforce demand projected an increase of 7% by 2029, representing
the need for an additional 221,900 jobs.\3\ Additionally, the need for
most APRNs is expected to grow by 45%.\4\ This increasing demand in the
nursing workforce can be attributed to several factors such as an aging
population, nursing retirements, and an increase in workplace
stress.\5\ Bold investments in Title VIII Nursing Workforce Development
Programs and NINR would help prepare a highly educated nursing
workforce and strengthen the foundation of nursing science, not only as
we confront existing health challenges, but as we provide tomorrow's
equitable and innovative healthcare solutions.
---------------------------------------------------------------------------
\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.
\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.
\5\ 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.
---------------------------------------------------------------------------
nursing workforce investments: sustaining education to secure a strong
nursing workforce
Our ongoing efforts to combat COVID-19 have made it abundantly
clear that a well-educated nursing workforce is essential. 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 8,200 students in Academic Year 2019-2020 alone.\6\
In addition, the Nurse Faculty Loan Program (NFLP) awarded 45 grants to
schools that supported 2,270 graduate nursing students in Academic Year
2019-2020.\7\ According to AACN's Annual Survey, student enrollment in
entry-level baccalaureate nursing programs increased by 5.6% in
2020.\8\ While this heightened interest in nursing education is
promising news, we need to ensure these students have ample nursing
faculty to guide them through their clinical and didactic education and
prepare them to respond to our nation's ever-changing healthcare
environment.
---------------------------------------------------------------------------
\6\ Department of Health and Human Services Fiscal Year 2022 Health
Resources and Services Administration Justification of Estimates for
Appropriations Committees. Pages 153-155. Retrieved from: https://
www.hrsa.gov/sites/default/files/hrsa/about/budget/budget-
justification-fy2022.pdf.
\7\ Department of Health and Human Services Fiscal Year 2022 Health
Resources and Services Administration Justification of Estimates for
Appropriations Committees. Page 167. Retrieved from: https://
www.hrsa.gov/sites/default/files/hrsa/about/budget/budget-
justification-fy2022.pdf.
\8\ American Association of Colleges of Nursing. (2021). Student
Enrollment Surged in U.S. Schools of Nursing in 2020 Despite Challenges
Presented by the Pandemic. Retrieved from https://www.aacnnursing.org/
News-Information/Press-Releases/View/ArticleId/24802/2020-survey-data-
student-enrollment%20%20%20%20%20.
---------------------------------------------------------------------------
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 to 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. 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 2019-2020, the NWD
program awarded grants supporting 11,620 nursing students from
disadvantaged backgrounds.\9\ The recruitment of underrepresented
racial and ethnic individuals and those from economically diverse
backgrounds to nursing positively impacts the classroom, professional
practice environments, and ultimately patients.
---------------------------------------------------------------------------
\9\ Department of Health and Human Services Fiscal Year 2022 Health
Resources and Services Administration Justification of Estimates for
Appropriations Committees. Page 159. Retrieved from: https://
www.hrsa.gov/sites/default/files/hrsa/about/budget/budget-
justification-fy2022.pdf.
---------------------------------------------------------------------------
As such, 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.
from research to reality: nursing science protects americans' health
AACN recognizes how scientific research and discovery is 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. 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% of research-focused
educational training grants at nursing schools are funded by NINR.\10\
Through these grants and others, nurse scientists, often working
collaboratively with other health professionals, are generating and
translating impactful new research in areas such as big data and data
science, precision health, and genomics.\11\ Despite the critical
research these grants support, NINR was only able to fund 8.9% of grant
applications in 2017, due to insufficient funding.\12\ This is the
lowest research project grant (RPG) success rate among all NIH
institutes and centers, and is significantly lower than the overall NIH
RPG success rate of 18.7%.\13\ To further this vital work, we are
requesting a total of at least $199.755 million for the National
Institute of Nursing Research.
---------------------------------------------------------------------------
\10\ Schnall, R. (2020) 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? Journal of
Professional Nursing, 36(1), 34-41. Retrieved from https://
www.sciencedirect.com/science/article/pii/S8755722319301164?via=ihub#.
\11\ National Institutes of Health, National Institute of Nursing
Research. The NINR Strategic Plan: Advancing Science, Improving Lives.
Retrieved from: https://www.ninr.nih.gov/sites/www.ninr.nih.gov/files/
NINR_StratPlan2016_reduced.pdf.
\12\ Federal Funding of Nursing Research by the National Institutes
of Health (NIH): 1993-2017 Kiely, Daniel P. et al. (2019) Page 9.
Retrieved from: https://www.nursingoutlook.org/article/S0029-
6554(19)30315-X/addons.
\13\ Ibid.
---------------------------------------------------------------------------
From the classroom to the frontlines, nurses and nursing students
are integral members of the healthcare team. 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 bold
support in FY 2022 of at least $530 million for the Title VIII Nursing
Workforce Development Programs and at least $199.755 million for the
National Institute of Nursing Research. Together, we can ensure that
such investments promote innovation and improve health and healthcare
in America.
[This statement was submitted by Susan Bakewell-Sachs, PhD, RN,
FAAN, Board Chair, American Association of Colleges of Nursing.]
______
Prepared Statement of the American Association of Colleges of
Osteopathic Medicine
The American Association of Colleges of Osteopathic Medicine
(AACOM) strongly supports fiscal year (FY) 2022 funding for the
following programs important to the osteopathic medical education (OME)
community:
--$46.1 billion for the National Institutes of Health (NIH)
--$6.1 billion for the Teaching Health Centers Graduate Medical
Education (THCGME) Program
--$9.2 billion for discretionary Health Resources and Services
Administration (HRSA)
--$980 million for the Title VII health professions workforce
development programs under the Public Health Service Act
--Permanent funding for the Rural Residency Planning and Development
(RRPD) Program
--$130 million for discretionary National Health Service Corps (NHSC)
Scholarship and Loan Repayment programs
--$67 million for the Area Health Education Center (AHEC) Program
--$125 million for the Primary Care Training and Enhancement (PCTE)
Program
--$500 million for the Agency for Healthcare Research and Quality
(AHRQ)
--$10 billion for the Centers for Disease Control and Prevention
(CDC)
AACOM leads and 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 37
accredited colleges of osteopathic medicine--educating nearly 31,000
future physicians, 25 percent of all U.S. medical students--at 58
teaching locations in 33 U.S. states, as well as osteopathic graduate
medical education professionals and trainees at U.S. medical centers,
hospitals, clinics, and health systems.
Osteopathic medicine plays an essential role in our nation's
healthcare delivery system and is a growing field. According to recent
data, AACOM received more than 28,000 applicants to osteopathic medical
school for the 2020-2021 application cycle, representing a 19.26
percent increase over the previous year. Osteopathic physicians focus
on treating the whole person, and over half practice in the primary
care specialties of family medicine, internal medicine, and pediatrics.
Importantly, osteopathic medical students receive 200 hours of
additional training in osteopathic manipulative treatment, a hands-on
treatment used to diagnose and treat illness and injury, giving us a
unique voice and perspective in the medical community. However, the
clinician workforce and scientists at osteopathic medical schools are
underutilized in NIH funding opportunities and underrepresented on NIH
Advisory Councils and standing study sections.
AACOM urges Congress to overcome the historic bias against
osteopathic medical research by expanding representation on NIH
Councils and study sections and increasing NIH funding. Expanding
engagement by osteopathic medical schools and professionals will result
in innovative healthcare delivery solutions, expanded evidence-based
research, and broader community-focused treatment models. OME
investment will advance research in primary care, prevention, and
treatment and employ an already diverse physician population that is
enriched in socioeconomically disadvantaged rural communities. AACOM's
request of $46.1 billion for NIH will support scientific advancements
that incorporate the osteopathic philosophy and strengthen the United
States position as the world's research and development leader.
OME has a proven history of establishing educational programs for
medical students and residents that target the healthcare needs of
rural and underserved populations. With health disparities on the rise,
and worsening because of the COVID-19 pandemic, we are proud to help
make healthcare access more equitable for all our country's patients
and communities. In fact, recent AACOM data show that 40 percent of
graduating 2019-2020 osteopathic medical students plan to practice in a
medically underserved or health shortage area; of those, 45 percent
plan to practice in a rural community.
AACOM expresses its strong support for $6.1 billion for the THCGME
Program and our desire for permanent, mandatory funding for this
critical program. According to HRSA, physicians who train in Teaching
Health Centers (THCs) are three times more likely to work in such
centers and more than twice as likely to work in underserved areas. The
continuation of this program is critical to addressing primary care
physician workforce shortages and delivering health care services to
underserved communities. AACOM is pleased that Congress supported this
highly successful bipartisan program through the Consolidated
Appropriations Act, 2021 and American Rescue Plan Act of 2021, which
extended the THCGME Program through fiscal year 2023 and provided
additional funding. However, new funding is needed to extend the THCGME
Program to meet economic challenges caused by the COVID-19 pandemic and
support additional expansion to underserved areas that face existing
shortages of primary care physicians.
AACOM appreciates the opportunity to submit its views and looks
forward to continuing to work with the Subcommittee on these important
matters.
[This statement was submitted by Robert A. Cain, DO, FACOI, FAODME,
President and Chief Executive Officer, American Association of Colleges
of
Osteopathic Medicine.]
______
Prepared Statement of the American Association of 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) 2022 appropriations for the
National Institutes of Health (NIH). AAI recommends an appropriation of
$52 billion for NIH for FY 2022, including at least $46.1 billion for
the regular NIH budget, to enable the agency to fund needed research to
prevent dangerous infectious diseases and treat debilitating chronic
illnesses, support meritorious scientists at all career stages, and
ensure a robust research enterprise that maintains U.S. preeminence in
biomedical science and innovation. Because the COVID-19 pandemic has
posed difficult challenges, including lab closures and other
interruptions, to many biomedical (particularly early career)
scientists, NIH needs, and AAI strongly supports, an infusion of
additional funding that would likely be considered outside of the
annual appropriations process.
AAI also supports the appropriation of substantial funding to
launch the newly proposed Advanced Research Projects Agency for Health
(ARPA-H). While AAI is enthusiastic about ARPA-H's potential, we
believe that any funding provided must supplement, and not supplant,
the NIH regular budget, and that this new agency must enhance, and not
interfere with, NIH's historic commitment to funding basic research.
AAI also urges that NIH solicit stakeholder input to help answer many
outstanding questions, including whether existing programs--and which
research areas--will be integrated into ARPA-H. Finally, AAI believes
that funding for ARPA-H projects should be provided for longer than
three years to ensure sufficient time for the kind of innovative,
collaborative, and transformative research that is contemplated.
illustrating the importance of understanding the immune system: covid-
19
The COVID-19 pandemic has highlighted both the importance, and high
stakes, of biomedical research. Our lives, health, security, and
prosperity depend on scientific understanding and advances. What felt
remote to many people--scientists toiling away unseen in their
laboratories--has become urgent, everyday news. The surge of interest
in immunology--and scientists' ability to meet this historic moment--
have been bright spots in an otherwise tragic, painful, and
unprecedented year, and rapidly developed vaccines to prevent COVID-19
infection have been a historic success story.
But SARS-CoV-2, the virus that causes COVID-19, continues to
mutate, giving rise to new variants. We know that this is what viruses
do, and we know that this is what our immune systems must be primed to
fight. Despite excellent news on the vaccine front, the regular
appearance of new variants, our paucity of therapeutics for those who
contract COVID-19, and our lack of understanding of, and treatments
for, Post-Acute Sequelae of SARS-CoV-2 infection (PASC, or ``long
COVID'') all render as premature any declaration of victory. We must
continue to invest robustly not only in a deeper understanding of how
the immune system responds to this virus and these vaccines, but also
in research devoted to the basic understanding of the immune system.
Such research will help us both emerge from this pandemic and prevent--
and more rapidly extinguish--any future ones.
But the study of immunology is about much more than infectious
diseases. Research on the immune system has taught us how to harness it
to kill malignant tumors and treat other chronic diseases
(immunotherapy); how it prevents or exacerbates chronic conditions such
as Alzheimer's, multiple sclerosis, and cardio-vascular disease; how it
enables--or prevents--the successful transplantation of a lifesaving
organ; and how it can protect its host from (natural or man-made)
agents of bioterrorism.
how basic immunology research led to rapid approval of vaccines and
treatments for covid-19
In this pandemic era, there is no better way to illustrate the
importance of a long-term commitment to biomedical research, and
specifically to immunological research, than to describe how science
achieved the near-impossible: the successful testing, manufacture, and
distribution of multiple, highly effective, and safe vaccines against
COVID-19 in less than a year after the identification of the causative
agent. The development of both treatments and vaccines for SARS-CoV-2
infection and COVID-19 was a result of decades of basic research, much
of which was funded by, or performed at, NIH. This work includes
understanding the virus, identifying good antigens for a vaccine, and
defining immune system responses to infection.
SARS-CoV-2 is a member of the beta-coronavirus family responsible
for two other recent outbreaks, SARS-CoV-1 (2003) and MERS (2012) and
is related to the coronaviruses that cause 15-30% of common colds. More
than 50 years of research on this virus family has allowed us to
understand key portions of the viral genome and viral life cycle, as
well as the importance of the spike protein for infection. While work
at NIH's National Institute of Allergy and Infectious Diseases' Vaccine
Research Center identified how to manipulate the spike protein so it
could be used in a vaccine, work on other infectious diseases and some
cancers facilitated the implementation of the mRNA platform into a
ready-to-use state. After developing mRNA vaccines for 10-15 years,
scientists launched some of the first clinical trials using the mRNA
platform against Zika virus and influenza. As a result, the platform
was ready to be quickly adapted to target the SARS-CoV-2 spike protein.
In other work, scientists rapidly characterized immune responses in
people who experienced SARS-CoV-2 infection. Patients with poor
outcomes had over exuberant immune responses; blocking these responses
with steroids improved survival. Immunologists also identified several
immune molecules that are at too high levels (e.g., IL-6) or too low
levels (e.g., interferon). Work is ongoing to understand what
protective immunity looks like, including the types of antibodies and
cellular immunity that prevent reinfection and characterize immunity
after vaccination. These studies will support the generation of booster
vaccines and give us insight into how well current vaccines protect
against new viral variants.
Finally, because of this longstanding research into coronaviruses,
scientists can reasonably infer how long protective immunity will last
following infection with, or vaccination against, SARS-CoV-2, giving
the public confidence to resume their daily activities while providing
the scientific community with a needed window in which to develop
booster vaccines that will protect against circulating viral variants.
vaccines against other infectious diseases and newly emerging threats
Vaccines remain the most effective method of disease prevention.
Vaccination against more than two dozen viral, bacterial, and fungal
diseases prevents about 2.5 million deaths globally and reduces the
severity of illness for millions of people annually.\1\ As the world's
population grows and as travel enables people to become even more
interconnected, we will continue to experience the very real threat of
new emerging pathogens causing a deadly pandemic. Lessons we learn from
developing and administering vaccines against SARS-CoV-2 will be
essential to protecting against other infectious diseases and a future
pandemic.
---------------------------------------------------------------------------
\1\ https://www.who.int/immunization/global_vaccine_action_plan/
GVAP_doc_2011_2020/en/.
---------------------------------------------------------------------------
Last year, I testified that there was no approved vaccine against
SARS-CoV-2, but that NIH-funded research conducted on other causative
pathogens in recent epidemics, including SARS and MERS, had made
possible the rapid development of vaccine candidates against SARS-CoV-
2.\2\ Since then, three vaccine candidates have received an Emergency
Use Authorization (EUA) from the Food and Drug Administration (FDA),
and two will be considered soon for licensure.\3\ AAI is confident that
previously conducted research, together with new research now being
urgently pursued, will result in additional vaccines and treatments to
prevent and/or reduce both the lethality of, and long-term symptoms
caused by, COVID-19.
---------------------------------------------------------------------------
\2\ https://www.niaid.nih.gov/diseases-conditions/coronaviruses.
\3\ https://www.fda.gov/emergency-preparedness-and-response/
coronavirus-disease-2019-covid-19/covid-19-vaccines; https://
www.pfizer.com/news/press-release/press-release-detail/pfizer-and-
biontech-initiate-rolling-submission-biologics; https://
investors.modernatx.com/news-releases/news-release-details/moderna-
announces-initiation-rolling-submission-biologics.
---------------------------------------------------------------------------
nih: the essential role of the nation's leading biomedical research
agency
As the nation's major funding agency for biomedical research, NIH
is an indispensable scientific leader both in the U.S. and around the
world. The steward of nearly $43 billion in federal funds, NIH
distributes more than 80% of its budget via a competitive peer review
process to more than 300,000 researchers at 2,500 universities,
medical schools, and other research institutions across the nation and
internationally.\4\ About 10% of its budget supports 6,000 additional
researchers and clinicians who work at NIH facilities around the
country.\5\ By funding these researchers and laboratories, NIH not only
advances scientific achievement, it also helps strengthen state and
local economies; in 2020, NIH funding supported more than 536,000 jobs
and accounted for $91 billion in economic activity across the U.S.\6\
The basic research that NIH funds is an essential and irreplaceable
part of the biomedical research pipeline; data show that it contributed
to all 210 of the new drugs approved by the FDA from 2010-2016.\7\
---------------------------------------------------------------------------
\4\ https://www.nih.gov/about-nih/what-we-do/budget; https://
report.nih.gov/award/index.cfm.
\5\ https://irp.nih.gov/about-us/research-campus-locations.
\6\ https://www.unitedformedicalresearch.org/wp-content/uploads/
2021/03/NIHs-Role-in-Sustaining-the-U.S.-Economy-FINAL-3.23.21.pdf.
\7\ https://directorsblog.nih.gov/2018/02/27/basic-research-
building-a-firm-foundation-for-biomedicine/.
---------------------------------------------------------------------------
NIH plays an essential role in responding to emerging health
threats; throughout the coronavirus pandemic, NIH leaders and
researchers have provided critically needed scientific advice to the
President, Congress, and the American public while also utilizing their
expertise to help develop a vaccine and treatments. NIH also regularly
apprises our nation's leaders about other scientific advancements and
research priorities, and its unparalleled peer review process fosters
the wise distribution of taxpayer dollars.
continued funding increases needed to rebuild and grow nih capacity
Leadership by this subcommittee has helped Congress provide
generous increases to the NIH budget over the last six years. Although
these increases have helped restore much of the purchasing power that
NIH lost after years of inadequate budgets and erosion from biomedical
research inflation, NIH's purchasing power remains below its 2003 peak
funding level. Meaningful budget growth will help close this gap and
allow NIH to invest not just in important research priorities across
its Institutes and Centers, but also in the research workforce. While
NIH should continue to support meritorious senior scientists, it is
urgent to ensure that we will have sufficient mid- and early career
scientists ready to take on increasingly complex scientific challenges.
We must provide NIH with the resources needed to provide a dynamic
research environment that allows for the training, development, and
support of our next generation of researchers, doctors, professors, and
inventors--and give them the confidence to pursue these careers.
conclusion
AAI greatly appreciates the subcommittee's strong support for NIH
and urges a budget for NIH of $52 billion for FY 2022. Within that, AAI
recommends an appropriation of at least $46.1 billion for the regular
NIH budget to help the agency grow its ability to invest in critically
important research, including vital immunologic research, support
meritorious scientists at all career stages, and help scientists
discover new ways to prevent, treat, and cure deadly and debilitating
diseases that afflict people in the U.S. and throughout the world. AAI
also urges a substantial appropriation to launch the new ARPA-H, which
could greatly advance human immunology at a time in our history when
pressing public health needs, and unprecedented scientific
opportunities, have converged.
[This statement was submitted by Ross M. Kedl, Ph.D., Chair of the
Committee on Public Affairs, American Association of Immunologists.]
______
Prepared Statement of the American Association of Neuromuscular &
Electrodiagnostic Medicine
fiscal year 2022 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 $46.1
billion in discretionary funding, an increase of $3.2 billion
over FY 2021. 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), and the National Institute of Neurological
Disorders and Stroke (NINDS).
--Please support adequate funding to establish 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.
_______________________________________________________________________
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 2022 L-HHS
appropriations. First and foremost, thank you for the ongoing
investment in medical research and patient care programs. Please
continue this investment in FY 2022.
In regards to 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 over 5,400 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
impulse 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 2022 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%
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).
[This statement was submitted by Peter A. Grant, MD, EDX, Fraud and
Abuse Consultant for FBI/OIG, American Association of Neuromuscular &
Electrodiagnostic Medicine.]
______
Prepared Statement of the American Association of University Professors
Dear esteemed Members of Congress:
The American Association of University Professors (AAUP) is the
oldest organization of its kind, representing faculty and graduate
employees in institutions of higher education. Since its founding in
1915, the AAUP has been an active and influential voice in higher
education. The AAUP defines and develops fundamental professional
values, standards, and procedures for higher education; advances the
rights of academics, particularly as those rights pertain to academic
freedom and shared governance; and promotes the interests of higher
education teaching and research.
On behalf of all faculty, and our chapters across hundreds of
institutions, we write to thank you for your historic investments in
higher education over the course of the past year. Across the country,
funding provided by the CARES Act and subsequent COVID-19 relief bills
have stopped the worst financial impacts from hitting our campus
communities. However, as appreciated as the unprecedented $135 billion
has been, faculty and staff have not shared in all the benefits, to the
detriment of the student experience. According to a survey we recently
ran of faculty senate chairs, 10 percent of institutions had laid off
tenured faculty and 28 percent had laid off contingent faculty in the
past year,\1\ despite the influx of federal funds that explicitly said
that they could be used to meet payroll budget gaps. Faculty working
conditions are student learning conditions. To us, it is clear that our
institutions need sustained, increased funding to invest more in the
people and infrastructure that make them run.
---------------------------------------------------------------------------
\1\ https://www.aaup.org/report/survey-data-impact-pandemic-shared-
governance.
---------------------------------------------------------------------------
We are pleased to see the historic levels of funding proposed in
the American Families Plan and the President's FY22 budget. This
funding makes meaningful progress towards our call for a New Deal for
higher education,\2\ which calls for free college, faculty and staff
job security, and student debt cancellation. These planks of our New
Deal platform will provide institutions the resources they need to
better foster innovation and ensure high quality instruction. Beyond
that, in a time of political division and heightened social tension,
open access to a college education might also help us strengthen civic
engagement and advance racial and economic justice. However, as
ambitious and appreciated as the President's proposals have been, in
some ways they fall short of what students need--and don't go far
enough to equitably fund our institutions.
---------------------------------------------------------------------------
\2\ https://newdealforhighered.org/.
---------------------------------------------------------------------------
The AAUP recommends that the Appropriations Committee prioritize
the following to better meet the needs of faculty and students:
1. Double the Pell Grant, the purchasing power of which has
fallen to less than a third of the annual cost of tuition at
the average public institution. More than a thousand
organizations have called on Congress to increase Pell Grant
funding dramatically, and that call seems more urgent than ever
given increased student need during the pandemic. Furthermore,
we strongly encourage you to maintain the Pell Grant reserve,
and not rescind it to fund other programs within the Labor-HHS-
Education budget.
2. Increase funding for programs that support students of color,
non-traditional students, and low-income students, such as but
not limited to Title III funds to minority serving
institutions, TRIO, SEOG, work study, and CCAMPIS. These
programs ought to see more generous funding to help close
equity gaps between non-traditional students and their peers,
and to begin to address historic underfunding that minority-
serving institutions have faced.
3. Increase funding to scientific research programs, which are a
significant source of funding to support graduate students in
their pursuit of knowledge and a degree. The cutting-edge
academic and scientific discoveries made by researchers at
American institutions makes our higher education system one of
the most respected in the world. Many of these discoveries lead
to robust partnerships with private industry that result in job
creation and economic growth. And, the scientific breakthroughs
of the past year make a clear case for increased funding for
broad and exploratory research.
4. Create a federal-state partnership to make college free, so
that any qualified student might pursue an associate's or
bachelor's degree at the institution of their choice. Congress
should also consider how to increase funding to private
institutions so that they too can offer reduced costs, such as
Title III programs and noting in report language that states
may use these funds for student grant aid to subsidize the cost
of attendance at private institutions in their home state.
5. As a condition of this new funding, it ought to protect
faculty and staff job security by setting a baseline of support
for workers. Gig work and the exploitation of contingent
faculty erodes the foundations of what makes American higher
education so respected internationally. Beyond supporting an
increase in the share of faculty on the tenure track, where
applicable, positions on college campuses should provide a
guarantee of good pay, continuity of employment, and parity in
wages and benefits between full and part time positions.
Institutions should work as much as possible to convert
existing short-term contracts with employees to longer-term or
tenure-track appointments.
6. Promote shared governance, by making clear in bill and report
language that federal funding to institutions and states in the
aftermath of the COVID-19 pandemic ought to maintain
instructional spending levels and faculty jobs, ahead of
administrative costs or debt financing. Furthermore, faculty
and staff must have meaningful input when administration seek
to cut costs in moments of financial uncertainty.
We would again like to thank you for your generous and historic
funding to meet the needs of students and institutions of higher
education during the pandemic. We look forward to working with you to
help our country recover from the pandemic, strengthen our communities
and civil society, and create thousands more good-paying jobs on campus
in the process.
[This statement was submitted by Kaitlyn Vitez, Government
Relations Officer, and John McNay, Government Relations Committee
Chair, American Association of University Professors.]
______
Prepared Statement of the American College of Cardiology
The American College of Cardiology (ACC) commends Congress for
boosting funding for the National Institutes of Health (NIH) and
Centers for Disease Control and Prevention (CDC) in FY21. To continue
this important progress in FY22 and beyond, and to adequately fund
public health and research infrastructure in response to the COVID-19
pandemic, ACC urges members of Congress to appropriate the following
funds toward agencies doing vital work in cardiovascular disease (CVD)
treatment and prevention: $3.963 billion for the National Heart Lung &
Blood Institute (NHLBI) to increase the NIH's purchasing power and
preserve U.S. leadership in research; $160 million toward the CDC's
Division for Heart Disease and Stroke Prevention to strengthen heart
disease prevention efforts at state and local levels, $10 million
toward CDC's Million Hearts to prevent 1 million heart attacks and
strokes, $46.7 million toward CDC's WISEWOMAN to help uninsured or
under-insured women prevent or control heart disease, $10 million
toward CDC congenital heart research to study its effects over the
patient's lifespan, and $310 million toward CDC's Office on Smoking and
Health to maintain the program's cost-effective tobacco control
efforts. ACC asks for the inclusion of report language promoting
valvular heart disease research at the NHLBI since clinical predictors
of patients at higher risk of sudden cardiac death are still lacking.
ACC envisions a world where innovation and knowledge optimize
cardiovascular care and outcomes. As the professional home for the
entire cardiovascular team, the mission of the College and its more
than 52,000 members is to transform cardiovascular care and improve
heart health. The ACC bestows credentials upon cardiovascular
professionals who meet stringent qualifications and leads in the
formation of health policy, standards and guidelines. The College also
provides professional medical education, disseminates cardiovascular
research through its world-renowned JACC Journals, operates national
registries to measure and improve care, and offers cardiovascular
accreditation to hospitals and institutions.
CVD, a class of diseases that includes diseased blood vessels,
structural problems, and blood clots, continues to be the leading cause
of death among men and women in the United States and is responsible
for 1 in every 4 deaths.\1\ More than 92 million Americans currently
suffer from some form of CVD--nearly one-third of the population--but
it remains one of the most underfunded deadly diseases, as the NIH only
invests 4 percent of its research dollars on heart research.\2\ The
heart disease death rate has continued to drop since the 1970s \3\ due
to scientific advances and improved heart medications and procedures--
but to meet the challenges of an aging population, rising obesity rates
and the long-term complications of COVID-19 and patients with heart
disease, the NIH must maintain its place at the forefront of medical
innovation for years to come. The NHLBI, the third-largest institute at
the NIH, conducts research related to heart, blood vessel, lung, and
blood diseases, generating drugs for lowering cholesterol, controlling
blood pressure, and dissolving blood clots. These biomedical
advancements have contributed to a 71 percent \4\ decrease in death
rates due to cardiovascular disease.
---------------------------------------------------------------------------
\1\ Heart Disease Facts; Centers for Disease Control and
Prevention. https://www.cdc.gov/heartdisease/facts.htm.
\2\ National Coalition for Heart and Stroke Research; American
Heart Association. http://www.heart.org/HEARTORG/Advocate/
IssuesandCampaigns/Research/National-Coalition-for-Heart-and-Stroke-
Research_UCM_428347_Article.jsp#.Wt4h-m4vypo.
\3\ Decline in Cardiovascular Mortality; National Library of
Medicine. https://www.ncbi.nlm.
nih.gov/pmc/articles/PMC5268076/.
\4\ HHS/NIH/NHLBI FY2017 Congressional Justification Report;
https://www.nhlbi.nih.gov/sites/default/files/media/docs/
Final%20NHLBI%202017%20CJ_R508_v1_0.pdf.
---------------------------------------------------------------------------
Preventing and treating CVD applies to long-term COVID-19 patients.
Recent studies have shown that cardiovascular consequences of COVID-19
extend beyond initial infection, and many COVID-19 survivors experience
some type of heart damage, even if they did not have underlying heart
disease and were never hospitalized. Imaging tests taken months after
recovery from COVID-19 have shown lasting damage to the heart muscle in
people who experienced only mild symptoms, which may increase the risk
of heart failure or other heart complications in the future.\5\ As CVD
continues to be the country's leading cause of death while COVID-19
infections also present risks to cardiovascular health, we recommend
the NHLBI be funded at $3.965 billion to support research on COVID-19
by leveraging existing NIH-funded studies and infrastructure, and to
maintain current activities and investment toward new research and
emerging technologies related to heart disease.
---------------------------------------------------------------------------
\5\ https://www.mayoclinic.org/diseases-conditions/coronavirus/in-
depth/coronavirus-long-term-effects/art-20490351.
---------------------------------------------------------------------------
More than 11 million Americans have heart valve disease (HVD) which
involves damage to one or more of the heart's valves and leads to
disrupted blood flow by not opening or closing properly.\6\ HVD can
lead to major complications and some people with HVD do not always have
symptoms, even if their disease is severe. ACC recommends that the
NHLBI address gaps in understanding heart valve disease to better
recognize indicators of patients at higher risk of sudden cardiac
death. We propose report language to better understand and develop
guidelines for treatment of high-risk patients: The committee
recognizes that heart valve disease involves damage to one or more of
the heart's valves, and symptoms can be difficult to detect and lead to
major complications. The committee encourages the NHLBI to expand
research on valvular disease to better understand and develop
guidelines for treatment of high-risk patients by using precision
medicine and advanced technological imaging to generate data,
identifying and developing a cohort of individuals with valvular heart
disease and available data, and corroborating data generated through
clinical trials to develop a prediction model to identify patients at
high risk for sudden cardiac arrest or sudden cardiac death from
valvular disease.
---------------------------------------------------------------------------
\6\ Heart Valve Disease Awareness Day; https://
www.valvediseaseday.org/the-issue/.
---------------------------------------------------------------------------
The CDC plays a vital role in protecting public health through
healthy lifestyle promotion and educational activities designed to curb
non-infectious diseases such as obesity, diabetes, stroke, and heart
disease. The CDC Division for Heart Disease and Stroke Prevention
supports efforts to improve cardiovascular health by promoting healthy
lifestyles and behaviors, healthy environments, and access to early
detection and affordable treatment. The division engages with local and
state health departments, and a variety of other partners, to provide
funding and resources, conduct research, track risk factors, and
evaluate current programs and policies relating to heart disease. We
recommend that the CDC Division for Heart Disease and Stroke Prevention
be funded at $160 million to explore the intersections between COVID-19
and cardiovascular disease; build or enhance critical data
infrastructure; and expand current work in priority areas through new
partnerships, programs, and projects, all focused on eliminating
disparities in health outcomes.
Launched in 2012 and co-led by the CDC and the Centers for Medicare
and Medicaid Services, the Million Hearts program coordinates and
enhances CVD prevention activities with the objective of preventing 1
million heart attacks and strokes in 5 years. The initiative aims to
achieve this goal by encouraging the public to lead a healthy and
active lifestyle, as well as improving medication adherence for aspirin
and other medications to manage blood pressure, cholesterol, and
smoking cessation. New funding would frontload the success of Million
Hearts by facilitating extensive partner input into the design of the
next five-year phase; integration of insights gleaned from the
pandemic, including and especially the inequities further exposed by
COVID-19; and analysis of the individual, community, and healthcare
actions with the greatest impact on cardiovascular health for all. We
recommend that Million Hearts be funded at $10 million to enhance
efforts preventing heart attacks and strokes.
CDC's WISEWOMAN initiative provides more than 165,000 under-
insured, low-income women ages 40-64 with services to help reduce heart
disease and stroke risk factors. Heart disease ranks as the leading
cause of death for women. Only 1 in 5 \7\ women believes heart disease
is her greatest health threat, and 11 percent \8\ of women remain
uninsured. We recommend that $46.7 million be allocated for WISEWOMAN
to provide preventive health services, referrals to local health care
providers, lifestyle programs, and counseling in all 50 states.
---------------------------------------------------------------------------
\7\ WISEWOMAN; Centers for Disease Control and Prevention. https://
www.cdc.gov/
wisewoman/.
\8\ Women's Health Insurance Coverage; The Henry J. Kaiser Family
Foundation. http://kff.org/womens-health-policy/fact-sheet/womens-
health-insurance-coverage-fact-sheet/.
---------------------------------------------------------------------------
Congenital heart disease (CHD), a life-long consequence of a
structural abnormality of the heart present at birth, is the number one
birth defect in the U.S. While the diagnosis and treatment of CHD has
greatly improved over the years, most patients with complex heart
defects need special care throughout their lives, and only by expanding
research opportunities can we fully understand the effects of CHD
across the lifespan. As authorized by the Congenital Heart Futures
Reauthorization Act of 2017, we recommend that the CDC National Center
for Birth Defects and Developmental Disabilities be funded at $10
million for enhanced CHD surveillance and public health research.
Programs within CDC's Office on Smoking and Health (OSH) work to
prevent smoking among young adults and eliminate tobacco-related health
disparities in different population groups. From 2012-2018, the CDC
estimates that more than 16.4 million people who smoke have attempted
to quit and about 1 million have successfully quit because of the OSH
Tips from Former Smokers campaign.\9\ While these programs have proven
effective in tobacco cessation and prevention, more than 480,000 people
still die every year from causes attributable to smoking, and 33
percent of those deaths stem from heart disease\10\ We recommend that
OSH be funded at $310 million to continue leading the nation's efforts
in preventing chronic diseases caused by tobacco use.
---------------------------------------------------------------------------
\9\ CDC Office on Smoking and Health; https://www.cdc.gov/
chronicdisease/pdf/aag/osh-H.pdf.
\10\ FDA Tobacco Products Public Health Information; https://
www.fda.gov/tobacco-products/public-health-education/health-
information.
---------------------------------------------------------------------------
On behalf of our members who work to prevent and treat CVD, ACC
would like to thank members of Congress for supporting medical
innovation as we continue the fight against heart disease and
understand the cardiovascular consequences of COVID-19. Stable funding
for medical research and healthy lifestyle promotion will save lives
and health care costs in the long term by creating jobs and new
technologies, which will produce billions of dollars in Medicare and
Medicaid savings over the next decade. Please help us secure robust
funding for NIH and CDC funding to protect the health of future
generations.
[This statement was submitted by Dipti Itchhaporia, MD, FACC,
President,
American College of Cardiology.]
______
Prepared Statement of the American College of Obstetricians and
Gynecologists
The American College of Obstetricians and Gynecologists (ACOG),
representing more than 60,000 physicians and partners dedicated to
advancing women's health, is pleased to offer this statement to the
Senate Committee on Appropriations, Subcommittee on Labor, Health and
Human Services, Education, and Related Agencies. We thank Chairwoman
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 in FY22. ACOG commends Congress
for making great strides to support research and data collection that
advance the health of women and families. Looking ahead, we urge you to
appropriate:
--Centers for Disease Control & Prevention (CDC): At least $10
billion for the CDC, including $102.5 million for the Safe
Motherhood Initiative, including $30 million for maternal
mortality review committees and $30 million for perinatal
quality collaboratives; and $250 million for public health
surveillance;
--National Institutes of Health (NIH): $46.1 billion for the NIH,
including at least $1.7 billion for Eunice Kennedy Shriver
National Institute of Child Health and Human Development
(NICHD), and $50 million shared evenly between CDC and NIH, for
research into firearm morbidity and mortality prevention;
--Health Resources & Services Administration (HRSA): $750 million for
the Title V Maternal and Child Health Block Grant, including
$15 million for the Alliance for Innovation on Maternal Health
(AIM) within the Special Projects of Regional and National
Significance (SPRANS); $10 million to expand depression
screening and treatment for pregnant and postpartum women; and
$5 million to establish, identify, and distribute clinicians in
maternity care health professional target areas;
--Office of Population Affairs (OPA): $737 million for the Title X
Family Planning Program; and
--$500 million for the Agency for Healthcare Research and Quality
(AHRQ).
Safe Motherhood Initiative at CDC: The United States has the
highest rate of maternal mortality and severe morbidity of any
industrialized country. The Safe Motherhood Initiative at CDC works
with state health departments to collect information on pregnancy-
related deaths, supports maternal mortality review committees (MMRCs),
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 MMRC. In addition, the CDC currently
supports 13 perinatal quality collaboratives (PQCs), often considered
the implementation arm of MMRCs. We must continue to build on this
progress and improve maternal health outcomes. ACOG requests that you
fund the Safe Motherhood Initiative at $102.5 million, including $30
million to help states expand or establish maternal mortality review
committees, and $30 million to support state-based perinatal quality
collaboratives in every state.
Women's Health Research at 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
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 existing initiatives to produce new insights and
solutions to benefit women and families. ACOG supports an appropriation
of $46.1 billion for the NIH in FY22, including at least $1.7 billion
for NICHD.
Maternal Therapeutics at NIH: In the United States each year, more
than 4 million women give birth 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 P.L. 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 August 2020, PRGLAC
produced an implementation plan for each of the 15 recommendations made
in 2018 to facilitate the inclusion of this population in clinical
research. ACOG supports the implementation of these recommendations
under the oversight of NICHD, working with other relevant NIH
Institutes, the CDC, and the Food and Drug Administration, and urges
Congress to express its continued support.
Title X Family Planning Program at 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. ACOG requests $737 million for Title X in FY22 to
ensure individuals in need have access to evidence-based care. ACOG is
pleased that the Biden administration has proposed to eliminate the
2019 Title X regulations that decreased access to health care services
and disproportionately imposed barriers to care for Black, Latinx, and
Indigenous communities. ACOG urges Congress to show its strong support
for transparent, respectful, evidence-based, and comprehensive
reproductive health care by funding this critical program.
Title V Maternal and Child Health Block Grant at 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 SPRANS discretionary grant, the
Block Grant supports the Alliance for Innovation on Maternal Health
(AIM) program--a program that works with states and hospital systems to
implement evidence-based best practices to improve maternal health
outcomes and reduce rates of maternal mortality and severe maternal
morbidity. For FY22, ACOG requests at least $750 million to respond to
the increased demands placed on the Block Grant, including $15 million
within SPRANS to support continued implementation of AIM.
Investing in Data and Quality at AHRQ: AHRQ is the federal agency
with the sole purpose of improving health care quality. AHRQ produces
data with the mission of making health care safer, higher quality, more
accessible, equitable, and affordable. AHRQ works with HHS and other
partners to ensure that the evidence improves patient safety. ACOG
supports $500 million for AHRQ in FY22, which reflects the FY10 funding
level for the agency adjusted for inflation and additional funding to
respond to the pandemic.
Public Health Surveillance at CDC: Uniform, accurate, and
comprehensive data is essential for addressing the rising rates of
maternal mortality and severe maternal morbidity in the US.
Unfortunately, the nation's public health data systems are antiquated,
lack interoperability and data and reporting standards, and are in dire
need of security updates. ACOG urges Congress to include a robust
investment in public health surveillance, and requests funding to be
used to modernize these systems to improve health. ACOG requests $250
million in FY22 for public health surveillance at CDC to implement
advanced technologies and train the next generation of data scientists.
Firearm Morbidity and Mortality Prevention (CDC and NIH): In 2017,
there were more than 39,000 U.S. firearm-related fatalities. Federally
funded public health research has a proven track record of reducing
public health-related deaths, whether from motor vehicle crashes,
smoking, or Sudden Infant Death Syndrome. This same approach should be
applied to increasing gun safety and reducing firearm-related injuries
and deaths, and CDC research will be as critical to that effort as it
was to these previous public health achievements. The foundation of a
public health approach is rigorous research that can accurately
quantify and describe the facets of an issue and identify opportunities
for reducing its related morbidity and mortality. For FY22, ACOG
requests $50 million, shared evenly between CDC and NIH, to conduct
public health research into firearm morbidity and mortality prevention.
Diagnosing and Treating Maternal Depression (HRSA): About 1 in 5
women experience maternal depression, and ACOG recommends that all
women be screened, yet barriers to accessing treatment remain. ACOG
commends Congress for funding Sec. 10005 of P.L. 114-255 to support the
establishment of a program at HRSA to expand depression screening and
treatment for pregnant and postpartum individuals. ACOG urges you to
fund the program at $10 million for FY22, a $5 million increase over
FY21, and increase support for the maternal mental health hotline to $5
million.
Maternity Care Target Areas (HRSA): Major pockets of the U.S. do
not have adequate access to needed maternity care, due to both a
workforce shortage and maldistribution of clinicians. This
disproportionately impacts access to obstetric care in rural
communities. Maternity care shortages threaten the ability of pregnant
individuals to receive timely prenatal and labor/delivery services.
According to the latest available data, more than half of pregnant
people living in rural areas reside more than 30-minutes by car from
the nearest hospital offering perinatal services. Further, a 2019 study
that analyzed severe maternal morbidity and mortality during childbirth
hospitalizations among rural and urban residents found that when
controlling for sociodemographic factors and clinical conditions, rural
residents had a 9 percent greater probability of severe maternal
morbidity and mortality, compared with urban residents.
The Improving Access to Maternity Care Act of 2018 (P.L. 115-320)
requires HRSA to identify maternity care health professional target
areas that are suffering from a shortage of maternity care clinicians,
including obstetrician-gynecologists and certified nurse-midwives, so
that those participating in the National Health Service Corps can be
placed in the communities most in need of their services. ACOG urges
you to fulfill the President's request for $5 million in FY22 to
implement the Improving Access to Maternity Care Act. Funding would be
used to establish criteria for and identify maternity care health
professional target areas, distribute maternity care health
professionals to those areas, and collect and publish data on the
availability and need for maternity care services within primary care
health professional shortage areas.
Thank you again for the opportunity to submit our recommendations
to the
subcommittee, and for your commitment to improving women's health.
______
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)
2022. ACP is the largest medical specialty organization and the second-
largest physician group in the United States. ACP members include
163,000 internal medicine physicians (internists), related
subspecialists, and medical students. Internal medicine physicians are
specialists who apply scientific knowledge and clinical expertise to
the diagnosis, treatment, and compassionate care of adults across the
spectrum from health to complex illness. As the Subcommittee begins
deliberations on appropriations for FY2022, ACP is urging funding for
the following proven programs to receive appropriations from the
Subcommittee:
--Health Resources Services Administration (HRSA), $9.2 billion;
--Title VII, Section 747, Primary Care Training and Enhancement
(PCTE), Health Resources and Services Administration (HRSA),
$71 million;
--National Health Service Corps (NHSC), $860 million in total program
funding;
--Agency for Healthcare Research and Quality (AHRQ), $500 million;
--Centers for Medicare and Medicaid Services (CMS), Program
Operations for Federal Exchanges, $296.5 million;
--Centers for Disease Control and Prevention (CDC), $10 billion,
Injury Prevention and Control, Firearm Injury and Mortality
Prevention Research, $50 million; National Center for Chronic
Disease Prevention and Health Promotion (NCCDPHP), Social
Determinants of Health program, $153 million;
--National Institutes of Health (NIH), $46.1 billion.
The United States is facing a shortage of physicians in key
specialties, notably in general internal medicine and family medicine-
the specialties that provide primary care to most adult and adolescent
patients. Current projections indicate there will be a shortage of
21,400 to 55,200 primary care physicians by 2033. Without critical
funding for vital workforce programs, this physician shortage will only
grow worse. HRSA is responsible for improving access to health-care
services for people who are uninsured, isolated or medically
vulnerable. Without critical funding for vital workforce programs, this
physician shortage will only grow worse. A strong primary care
infrastructure is an essential part of any high-functioning healthcare
system. A recent report by the National Academy of Sciences, calls on
policymakers to increase our investment in primary care as evidence
shows that it is critical for achieving health care's quadruple aim
(enhancing patient experience, improving population, reducing costs,
and improving the health care team experience. Therefore, we urge the
Subcommittee to provide $9.2 billion for HRSA programs for FY2022 to
improve the care of medically underserved Americans by strengthening
the health workforce.
The health professions' education programs, authorized under Title
VII of the Public Health Service Act and administered through HRSA,
support the training and education of health care providers 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, in order to maintain and
expand the pipeline for individuals training in primary care. While the
College appreciates the $10 million increase to the program in FY2018,
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.
The College urges at least $860 million in total program funding
for the NHSC in FY2022. In FY2021, the NHSC received $120 million in
discretionary funding to expand and improve access to quality opioid
and substance use disorder treatment in underserved areas, in addition
to $310 million in mandatory funds which have been extended through
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 FY2020, with a projected field strength of over 14,000
primary care clinicians, NHSC members are providing culturally
competent care to a target of almost 15 million patients at a targeted
18,000 NHSC-approved health care sites in urban, rural, and frontier
areas. These funds would help maintain NHSC's field strength helping to
address the health professionals' workforce shortage and growing
maldistribution. There is overwhelming interest and demand for NHSC
programs, and with more funding, the NHSC could fill more primary care
clinician needs. In FY2016, there were 2,275 applications for the
scholarship program, yet only 205 new awards were made. There were only
150 scholarship awards in FY2020. There were 7,203 applications for
loan repayment and only 3,079 new awards in FY2016. Accordingly, ACP
urges the subcommittee to double the NHSC's overall program funding to
$860 million to meet this need and to sustain the American Rescue Plan
Act's $800 million for the NHSC for when the pandemic subsides.
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, restoring the
agency to its FY2010 enacted level adjusted for inflation. This amount
will allow AHRQ to help providers help patients by making evidence-
informed decisions, to fund research that serves as the evidence engine
for much of the private sector's work to keep patients safe, and to
make the healthcare more efficient by providing quality measures to
health professionals.
ACP supports at least $296.5 million in discretionary funding for
federal exchanges within CMS' Program Operations, which has been funded
at $2.8 billion in FY2020. This funding would allow the federal
government to continue administering the insurance marketplaces, as
authorized by the Affordable Care Act, if a state has declined to
establish an exchange that meets federal requirements. CMS now manages
and operates some or all marketplace activities in over 30 states.
Without these funds it will be much more difficult for the federal
government to operate and manage a federally-facilitated exchange in
those states, raising questions about where and how their residents
would obtain and maintain coverage, 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 $10 billion overall for this mission, especially in light of
the ongoing COVID-19 public health emergency (PHE). The College also
supports $50 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 and FY2021 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 NCCDPHP to fund its Social Determinants
of Health program. 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. Frequent, granular, and high-
quality disaggregated demographic data are needed to fully understand
the impact on racial and ethnic minority communities and better offer
targeted care not only for COVID-19, but for health care overall.
Lastly, the College strongly supports $46.1 billion for NIH in
FY2022 so the nation's medical research agency continues making
important discoveries that treat and cure disease to improve health and
save lives and that maintain the United States' standing as the world
leader in medical and biomedical research.
The College greatly appreciates the support of the Subcommittee on
these issues and looks forward to working with Congress on the FY2022
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 82,000 members of the American
College of Surgeons (ACS), thank you for the opportunity to submit
written testimony addressing fiscal year (FY) 2022 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 2022:
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). MISSION ZERO takes 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.
By facilitating the implementation of military-civilian trauma
partnerships, this program will preserve lessons learned from the
battlefield, translate those lessons to civilian care, and ensure that
service members maintain their readiness to deploy in the future. The
ACS strongly supports the funding of MISSION ZERO at the authorized
amount of $11.5 million for FY 2022.
Funding for Cancer Research and Prevention
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 2022.
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 $46.111 billion including $7.609
billion for the National Cancer Institute (NCI). The ACS also urges the
inclusion of $559 million for cancer programs at the Centers for
Disease Control and Prevention (CDC), including $50 million for the
National Comprehensive Cancer Control Program, and $70 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 39,000 firearm-related fatalities in 2019, a
measured increase over previous years. ACS believes this number can be
reduced through federally funded firearms research. 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. The ACS supports $50 million specifically for
public health research into firearm morbidity and mortality prevention
through the CDC for FY 2022.
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 Congressional Lobbyist, at [email protected] if
you have any questions or would like additional information.
______
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 $737.47 million for FY 2022, aligned
with the top line included in the president's budget request. This
recommendation is also consistent with the request from the Friends of
IES coalition, for which we are a leading member. In addition, AERA
recommends the base funding level of $46.1 billion for the National
Institutes of Health (NIH) in fiscal year 2022, in support of important
research in the Eunice Kennedy Shriver National Institute of Child
Health and Human Development (NICHD) and the Office of Behavioral and
Social Science Research (OBSSR).
AERA is the major national scientific association of 25,000
faculty, researchers, graduate students, and other distinguished
professionals dedicated to advancing knowledge about education,
encouraging scholarly inquiry related to education, and promoting the
use of research to improve education and serve the public good. Our
members, as well as state and federal policymakers and practitioners,
rely on IES to provide and support reliable education statistics, data,
research, and evaluations.
IES is the independent and nonpartisan statistics, research, and
evaluation arm of the U.S. Department of Education charged with
supporting and disseminating rigorous scientific evidence on which to
ground education policy and practice. 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.
We appreciate the increase to IES appropriations over the past few
fiscal years and the funding provided in the American Rescue Plan Act,
the latter of which will go toward needed resources in data and special
education research to understand how schools will work to address
learning gaps due to lost instructional time. Throughout the pandemic,
IES has served as an important resource in providing information about
distance learning; pursuing interventions to address socioemotional
needs; and collecting salient data on schools offering remote, hybrid,
and in-person learning. The increased demand for evidence-based
programs since the onset of COVID-19 and the need to address potential
learning recovery only further speaks to the priority importance of
support for education research and statistics at IES to inform policy
and practice.
We see numerous examples of bipartisan support for scientific
research and evidence-based decision making. The Department of
Education is implementing the provisions of the bipartisan Foundations
of Evidence-Based Policymaking Act, which directs federal agencies to
leverage data and evaluations to inform policy decisions. A bipartisan
bill that has been introduced to inform the forthcoming reauthorization
of the Workforce Investment and Opportunity Act (WIOA) would call for
investment in research in adult education. The data and research
infrastructure to build evidence for improving educational outcomes
require additional funding necessitating action by your committee.
Since IES was created in 2002, it has made visible scientifically-
based contributions to the progress of education that are used in
classrooms across the country. For example, IES has funded research on
multi-tiered systems of support, including positive behavior
interventions and supports, that have been highlighted in the
Department of Education's COVID-19 handbook to guide school reopening.
Several webinars and resources produced by the Regional Educational
Laboratories highlighting evidence-based practices for educators,
school support staff, and school leaders are incorporated in the Safer
Schools and Campuses Best Practices Clearinghouse. As the nation
continues to emerge from the pandemic, this is a critical time to
invest in education research to produce essential knowledge about
teaching and learning across all levels of education as well as to
identify lessons learned that can foster educational innovations.
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. To date, IES has
been unable to meet the state demand for SLDS grants. For the FY 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 FY 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.
AERA also is concerned with the reduced staff capacity at IES, and
I would like to draw particular attention to the decades-long staff
attrition at the National Center for Education Statistics (NCES). As
the second-oldest principal federal statistical agency in the United
States, NCES provides objective, nonbiased data on a wide range of
education indicators, including information on teacher salaries, the
amount of loans taken out by undergraduate students, and the
participation of students in English language learner programs. NCES
staff are also responsible for the development and administration of
the National Assessment of Educational Progress, detailing longitudinal
trends in student achievement. In recognizing the need for NCES to
produce accurate, reliable, and trustworthy data, we encourage the
subcommittee to ensure that NCES and IES have the appropriate level of
staff in order to effectively carry out their missions in the Program
Management line.
In addition to IES, AERA recommends $46.1 billion for the National
Institutes of Health (NIH) in fiscal year 2022 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. Investment in NICHD
will allow the institute to continue research to both increase
understanding how best to support executive functioning, 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
and in terms of prevention, intervention, and the health-risk
consequences of a lack of or limited educational exposure.
Thank you for the opportunity to submit written testimony in
support of $737 million for IES and $46.1 billion in base level funding
for NIH in fiscal year 2022. AERA welcomes working with you and your
subcommittee on strengthening investments in essential research, data,
and statistics related to education and learning.
[This statement was submitted by Felice J. Levine, PhD, Executive
Director, American Educational Research Association.]
______
Prepared Statement of the American Foundation for Suicide Prevention
The American Foundation for Suicide Prevention (AFSP), the nation's
largest non-profit dedicated to saving lives and bringing hope to those
effected by suicide is submitting testimony on behalf of our over 30
thousand volunteer Field Advocates nationwide. AFSP has Chapters in all
50 states and sponsors a variety of community-based programming across
the country each year.
The following testimony outlines suicide in the United States and
AFSP's recommendations to the Subcommittee for Fiscal Year 2022.
suicide: a national public health crisis
Suicide is the second leading cause of death for ages 10-34 in the
United States and in 2019 was the 10th leading cause of death.\1\
Provisional 2020 suicide death data from the CDC show that deaths by
suicide in the U.S. declined from 47,511 to 44,834 (5.6%) between 2019
and 2020.\2\ Suicide reportedly moved from the tenth to the eleventh
leading cause of death as COVID-19 became the third leading cause of
death in 2020.\3\ While the decreases in suicide deaths are promising
and the curve may be beginning to shift downward, efforts must continue
to be expanded and built upon to ensure there are mental health
resources as the pandemic continues to shift and impact different
populations disproportionately. Historically, suicide rates have
initially gone down during some periods of wartime and other disasters
and have shown mixed results during or after previous epidemics.
Provisional 2020 data appear consistent with this trend. It is
possible, though not pre-determined, that we could experience an
increase in suicide risk as the immediate COVID-19 threat lessens and
in the aftermath period if community cohesion diminishes and if less
attention is paid to intentional social connections, proactive
resilience and mental health self-care, and the importance at key times
of engaging in mental health treatment and crisis care. Helping those
who are struggling with basic needs can also mitigate suicide risk.
---------------------------------------------------------------------------
\1\ https://www.cdc.gov/injury/wisqars/index.html.
\2\ https://jamanetwork.com/journals/jama/fullarticle/
2778234?utm_source=newsletter&utm_
medium=email&utm_campaign=newsletter_axiosvitals&stream=top.
\3\ Ibid.
---------------------------------------------------------------------------
While provisional 2020 mortality data show a declining rate of
suicide for the overall U.S. population, we do not yet have the full
picture as to how this translates to geographic areas within states or
specific populations. The pandemic has had a disproportionate impact on
certain populations; there are concerning signals of increasing suicide
rates in some non-White populations during the pandemic, e.g., in
Maryland and Connecticut.\4\ It may be a year or longer until data and
research are available to understand the entire impact of COVID-19 on
suicide.
---------------------------------------------------------------------------
\4\ https://jamanetwork.com/journals/jamapsychiatry/fullarticle/
2774107.
---------------------------------------------------------------------------
Furthermore, during the COVID-19 pandemic, data show 50-70% of the
population report elevations in experiences of depression, anxiety,
loneliness, trauma, loss, grief and increased substance use.\5\
Numerous studies have kept abreast of the nation's mental health
experiences and suffering during the pandemic through various
mechanisms such as the CDC Household Pulse Survey during COVID which
has been surveying 60-90,000 Americans adults every 3-5 weeks during
the pandemic. The portion of the American public experiencing anxiety,
isolation, symptoms of depression, insomnia and increased substance use
has been rising.
---------------------------------------------------------------------------
\5\ https://www.cdc.gov/nchs/covid19/pulse/mental-health-care.htm.
---------------------------------------------------------------------------
As the pandemic progressed during 2020, the proportion of
respondents who reported detrimental effects on their mental health
continued to rise--39% in May 2020 and 53% in July 2020. It was only
until just recently, in March 2021, that we are seeing the first
decreases in distress--8-10 percentage points--for depression and
anxiety across age and demographic groups.\6\ However, the CDC reported
on June 18, 2021 there was a 51 percent rise in suspected suicide
attempts among girls ages 12-17 from February 2021 to March 2021
compared to the same time period in 2019, prior to the pandemic.\7\
While this does not mean that there was necessarily an uptick in
suicide deaths, the statistic is certainly alarming, and we do not yet
have race and ethnicity data for when this study was conducted.
---------------------------------------------------------------------------
\6\ https://www.cdc.gov/mmwr/volumes/69/wr/mm6932a1.htm.
\7\ https://www.cdc.gov/mmwr/volumes/70/wr/
mm7024e1.htm?s_cid=mm7024e1_w.
---------------------------------------------------------------------------
recommendations
As instances of suicidal ideation and attempts increase, funding
and resources must meet the needs of those most at risk. Therefore,
AFSP is advocating for Fiscal Year 2022 funding increases to ensure
that communities are adequately prepared to respond to crisis,
implement community-based programming for those most at risk, collect
data to improve prevention, and to invest in research to meet patients
where they are, in healthcare settings. We thank Chairwoman Murray and
Ranking Member Blunt for the opportunity to share our below priorities.
Substance Abuse and Mental Health Services Administration (SAMHSA)
The National Suicide Prevention Lifeline coordinates a network of
over 180 crisis centers across the United States by providing 24/7 free
and confidential suicide prevention and crisis intervention services
for people in distress, their loved ones, and best practices for
professionals. The Lifeline routes calls from anywhere in the country
to a network of certified local crisis centers that can then link
callers to local emergency, mental health, and social services
resources. Last year, over 2.5 million calls were made to the Lifeline,
resulting in longer wait times and a strain on local crisis centers.
Additional funding is needed to ensure that the Lifeline is adequately
equipped to handle increasing call and outreach volume.
We request at least $102 million for the National Suicide
Prevention Lifeline, as included in the President's Fiscal Year 2022
Budget Request. Following passage of the National Suicide Hotline
Designation Act in September 2020, the easily accessible 9-8-8 dialing
code was designated to replace the Lifeline's current 1-800 number. 9-
8-8 will be the new easy to remember and universal phone number for
suicide prevention and mental health crisis by July 2022. This presents
an urgent need to ensure that local crisis call centers and the
national infrastructure for the Lifeline are prepared for the
anticipated increase in calls and strain on an already overburdened
system. Additional funding to the Lifeline would facilitate the
development of a unified call center platform and data analytics,
telecom costs for each contact and routing to local crisis centers,
provision of specialized services at national back up centers for
calls, chat, and text, targeted funding for call centers and national
backup centers, multi-lingual assistance, quality assurance and
training standards, and supporting partnership outreach. Based on an
initial analysis from Vibrant Emotional Health, the current
administrator of the Lifeline, year one implementation estimates for
988 could grow to as much as $240 million. It is expected that SAMHSA
and the Department of Veterans Affairs (VA) will jointly release a
final cost estimate report to Congress regarding Lifeline funding needs
later in the summer of 2021 which will help better inform the critical
resource needs that are urgently needed. We hope the Appropriations
Committee will work with us to adequately address this critical
resource, in Fiscal Year 2022 and beyond.
The Centers for Disease Control (CDC)
As the nation's leading health protection agency, it is a natural
fit that the CDC expand their suicide prevention efforts. Through
investing further in the CDC's new suicide prevention line, there is a
more holistic approach to suicide prevention programming beyond the
work that SAMHSA and the National Institutes of Health (NIH) are
implementing, evaluating, and researching. There is a need to make
strategic investments that will help save lives and reduce the suicide
rate. Therefore, AFSP advocates for $36 million for Suicide Prevention
initiatives at CDC's Center for Injury Prevention and Control. Created
in Fiscal Year 2020, the Congress has generously provided $22 million
for the program over the last two fiscal years. Enhanced funding in
Fiscal Year 2022 will help expand these community-based grants into
approximately 25 states. The grants are used to implement and evaluate
a comprehensive public health approach to suicide prevention, with
attention to vulnerable populations, such as Veterans, tribal and rural
communities, LGBTQ, or homeless citizens. These groups account for a
significant proportion of the suicide burden and have suicide rates
greater than the general population. A key outcome of this funding is a
10% reduction in suicide and suicide attempts among vulnerable
populations. Through these cooperative agreements, CDC aims to build a
national program that will help reverse increasing suicide trends
across our nation and contribute to the national goal of reducing
suicide by 20% by 2025.
Data collection as it relates to suicide deaths is an important
piece of preventing future deaths and implementing prevention
strategies within our communities. AFSP advocates for a $10 million
increase for the National Violent Death Reporting System (NVDRS) as
included in the President's Fiscal Year 2022 Budget Request. NVDRS is
the most comprehensive database on circumstances surrounding violent
deaths in the U.S., including suicide. Since the program's inception in
2002, NVDRS has grown to a nationwide program with funding to support
implementation in all 50 states and select territories. Yet, the
current funding is not sufficient for long-term program success. States
are clamoring for additional resources to address various
implementation challenges and support investments in program
infrastructure, as well as program growth and innovation. NVDRS
stakeholder organizations support a funding level of $50 million by FY
2027 to strengthen the program.
National Institute of Mental Health
As the largest private funder of suicide prevention research in the
US, AFSP continues to advocate for increased federal funding and
prioritization of suicide prevention research. The National Institutes
for Health and more specifically the National Institute of Mental
Health (NIMH) play a key role in advancing the Nation's suicide
prevention research priorities. AFSP encourages the continued
implementation of the Prioritized Research Agenda for Suicide
Prevention released by the National Action Alliance for Suicide
Prevention, that is meant to advance the National Strategy for Suicide
Prevention. To note, more recently, in January 2021, there was a
Surgeon Generals Call to Action to Implement the National Strategy for
Suicide Prevention, which further outlines the six actions and
associated strategies that will move the U.S. further towards
implementation of the National Strategy. Overall imparting the need for
increased federal investment in suicide prevention research and
programmatic needs.
As the COVID-19 pandemic shifts, there is a need to ensure that
when individuals are visiting the Emergency Department or their primary
care physician that screening tools and resources meet them, so if they
are in need of mental health and crisis services, they are able to
receive comprehensive care. This is an especially prominent area for
necessary research as, up to 45 percent of people who die by suicide
visit their primary care physician in the month prior to their
death.\8\ AFSP recommends the following report language for Fiscal Year
2022, to place a special emphasis on the primary care setting, given
the great number of Americans seeking mental health care from their
primary care physician.
---------------------------------------------------------------------------
\8\ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3146379/
#: :text=A%20review%20of%20
studies%20analyzing,the%20month%20before%20their%20death.&text=Only%2020
%25%20 saw%20a%20mental,10%20in%20the%20preceding%20month.
---------------------------------------------------------------------------
proposed fiscal year 2022 report language: suicide prevention
The Committee is encouraged that 2019 was the first year in two
decades in which the suicide rate decreased. But death by suicide
remains the tenth leading cause of death in the United States, and the
Committee remains committed to providing the resources necessary to
address this alarming crisis. The Committee commends NIMH for
consistently expanding resources for suicide screening and prevention
research over the last four fiscal years and strongly encourages the
Institute to provide additional increases for this purpose in fiscal
year 2022, with special emphasis on producing models that are
interpretable, scalable, and practical for clinical implementation,
including utilization of healthcare, education and criminal justice
systems that serve populations at risk. In addition, the Committee
encourages NIMH to prioritize research efforts related to primary care
settings to evaluate suicide prevention interventions, strategies, and
programs, including assessments of the effects of the COVID-19
epidemic. The Committee requests that NIMH provide an update on these
efforts in the fiscal year 2023 Congressional Justification.
The American Foundation for Suicide Prevention is grateful for the
Subcommittee's continued support of suicide prevention efforts and
looks forward to additional conversations about the vital resources
needed to help save lives and prevent suicide. Please do not hesitate
to contact Natalie Tietjen, Manager of Federal Policy
([email protected]) on my staff with additional questions or
clarifications.
[This statement was submitted by Laurel Stine, JD, MA, Senior Vice
President, Public Policy, American Foundation for Suicide Prevention.]
______
Prepared Statement of the American Gastroenterological Association
national cancer institute
Chairwoman Murray, Ranking Member Blunt, and members of the
Subcommittee, I would like to start by thanking you for the opportunity
to submit testimony on the U.S. Department of Health and Human Services
(HHS) fiscal year (FY) 2022 appropriations bill. I am Dr. Fola May, and
I am an associate professor of medicine at the University of
California, Los Angeles, and researcher at the UCLA Center for Cancer
Prevention Control Research (CPCR) and UCLA Kaiser Permanente Center
for Health Equity. I am submitting testimony on behalf of the American
Gastroenterological Association (AGA). The AGA was founded in 1897, and
today, it has expanded its membership to include more than 16,000
professionals who are dedicated to the advancement of science,
practice, and research in the field of gastroenterology. We want to
first thank you for your ongoing bipartisan investment in the National
Institutes of Health (NIH). We respectfully request the subcommittee to
support our FY 2022 NIH funding recommendation of at least $46.111
billion, a $3.177 billion increase over the comparable FY 2021 funding
level for the NIH, which would allow for the NIH's base budget to keep
pace with the biomedical research and development price index of 2.3 %
and allow meaningful growth of 5%. Additionally, we request report
language to support research to better understand the impact of COVID-
19 on colorectal cancer disparities.
Colorectal Cancer Incidence
Colorectal cancer (CRC) remains the second leading cause of cancer
deaths in the United States. The American Cancer Society (ACS) \1\
estimates 149,500 new cases of CRC and 52,980 CRC-related deaths in the
U.S. in 2021. The ACS 2021 cancer report also shows an emerging trend
of CRC in a younger demographic; The data shows a 2% increase in CRC in
individuals under 50 years.
---------------------------------------------------------------------------
\1\ American Cancer Society. Cancer Facts & Figures 2021. Atlanta:
American Cancer Society; 2021. https://www.cancer.org/content/dam/
cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-
and-figures/2021/cancer-facts-and-figures-2021.pdf.
---------------------------------------------------------------------------
CRC has a higher impact on communities of color. Specifically,
Black, and Native American individuals have the highest incidence of
CRC; Black Americans have the highest rate of CRC-related death, and
Latinos have CRC screening rates far below White and Black
Americans.\2\
---------------------------------------------------------------------------
\2\ Balzora, S., Issaka, R. B., Anyane-Yeboa, A., Gray, D. M., 2nd,
& May, F. P. (2020). Impact of COVID-19 on colorectal cancer
disparities and the way forward. Gastrointestinal endoscopy, 92(4),
946-950. https://doi.org/10.1016/j.gie.2020.06.042.
---------------------------------------------------------------------------
COVID-19's Impact on CRC Screenings
Screening can prevent colorectal cancer deaths by detecting
precancerous polyps early, allowing for early treatment and full
recovery. Unfortunately, as with other health care services, the COVID-
19 pandemic significantly reduced the volume of preventive screenings.
According to a report,\3\ CRC screenings were estimated to have dropped
by 86% in the first few months of the pandemic and have not yet fully
recovered.
---------------------------------------------------------------------------
\3\ EPIC Health Research Network. Delayed Cancer Screenings-A
Second Look. Available at: https://ehrn.org/articles/delayed-cancer-
screenings-a-second-look/. pdf. Accessed May 17, 2021.
---------------------------------------------------------------------------
With the drop in screenings, delay in diagnosis, lack of access to
care, abandonment of care, interruption or alteration in treatment and
job loss resulting in lapsed health insurance coverage etc., cancer
mortality rates across numerous cancers have increased. The National
Cancer Institute (NCI) estimates a 1% increase in deaths from breast
and colon cancer over the next 10 years, which equates to an additional
10,000 deaths due to the pandemic's impact on screening and
treatment.\4\
---------------------------------------------------------------------------
\4\ Sharpless, N. E. (2020). COVID-19 and cancer. https://tcjl.com/
wp-content/uploads/2020/06/Science-COVID-19-and-Cancer-editorial-
copy.pdf.
---------------------------------------------------------------------------
As communities across the U.S. fight the pandemic locally,
community-based health care facilities that typically would offer
cancer screenings and other preventative health services have
reallocated their limited resources and shifted workforce deployment to
address the pandemic. This reduction in cancer screening resources has
heightened the ongoing health care access issues that impact vulnerable
populations, and their worsening clinical outcomes. Specifically,
racial, and ethnic minority communities, who, including before the
pandemic, have lower rates of CRC screening and higher rates of
incidence and mortality from CRC.
Health disparities and CRC
Colorectal cancer (CRC) during the pandemic places a spotlight on
the health disparities and inequities stemming from social determinants
of health that continue to plague medically underserved populations.
COVID-19 cases, hospitalizations and deaths were highest among
communities of color, especially those with comorbidities like obesity,
diabetes, and asthma. Although screening rates are resuming, the rates
in minority communities likely still lag due to access, financial,
transportation and other socioeconomic factors exacerbated by the
pandemic.
The NIH resources spent on COVID-19 and health disparities have
been essential to better understand the long-term impact of the
pandemic on the medically underserved population in the U.S. To improve
CRC screening, prevention and treatment, AGA recognizes the continued
need to collect systemic data on the short and long-term outcomes of
COVID-19 and CRC disparities. Therefore, AGA urges the subcommittee to
include the following report language that would allow NIH to continue
its support of studies focused on CRC disparities heightened by the
COVID-19 pandemic.
COVID-19 Pandemic Impact on Colorectal Cancer Disparities.--Given
the impact that screening can have on reducing mortality and morbidity
in colorectal cancer (CRC), the Committee encourages the NIH to study
the impact of the COVID-19 pandemic on the incidence of CRC in minority
communities. The committee is hopeful that such information will
provide policymakers with a better understanding of the effects on
minority communities and help develop strategies to address barriers to
screening and reduce health inequities and cancer deaths.
On behalf of AGA, its members, and the GI community, I would like
to thank you for your consideration of this request. If you have any
questions, please contact Kathleen Teixeira, Vice President of
Government Affairs, at [email protected].
[This statement was submitted by Dr. Fola May, MD, PhD, MPhil,
Associate
Professor of Medicine, University of California, Los Angeles.]
______
Prepared Statement of the American Geophysical Union
The American Geophysical Union (AGU), a non-profit, non-partisan
scientific society, appreciates the opportunity to submit testimony
regarding the fiscal year (FY) 2022 appropriation for the National
Institute of Environmental Health Sciences (NIEHS). AGU, on behalf of
its community of 130,000 Earth and space scientists, respectfully
requests that the 117th Congress appropriate $875 million for the
NIEHS. AGU's appropriations request takes into consideration any
previous budget cuts is driven by the need for significant investment
in federal research and development to ensure that the U.S. remains at
the forefront of research and innovation.\1\
---------------------------------------------------------------------------
\1\ This amount of growth is recommended by the Innovation: An
American Imperative statement, which was authored by nine large U.S.
corporations and endorsed by over 500 leading industry, higher
education, science, and engineering organizations from across the 50
states. https://innovation-imperative.herokuapp.com/index.html.
---------------------------------------------------------------------------
Under the umbrella of the National Institutes of Health (NIH), the
NIEHS conducts essential, innovative research that advances our
understanding of the effects of environmental changes or exposures on
human health and disease in the U.S. and across the globe. Through
NIEHS research, policymakers have access to vital, unbiased science
that is necessary for making informed decisions when addressing public
health issues. A few examples of the NIEHS's invaluable work are
provided below.
Improving Disaster Response, Reducing Health Impacts, & Preventing
Future Harm
The NIH Disaster Research Response program, launched by the NIEHS
and the National Library of Medicine, helps to address the ongoing need
for time-sensitive research in the aftermath of disasters, such as
hurricanes, wildfires, oil spills, and public health crises. Such
research helps scientists, government agencies, and communities better
understand immediate environmental exposures and injury risks,
potential short-term and long-term health impacts, the effectiveness of
health response efforts and environmental cleanup efforts, as well as
factors affecting post-disaster recovery and resiliency to future
events. To support timely gathering of the environmental and toxicology
data needed, the program has readily available research protocols, data
collections tools, and training resources.\2\
---------------------------------------------------------------------------
\2\ See, NIH Disaster Research Response Program (DR2), https://
dr2.nlm.nih.gov/.
---------------------------------------------------------------------------
Increasing Knowledge of Health Effects Related to PFAS Exposure
The NIEHS continues to be at the forefront of research on
perfluoroalkyl and polyfluoroalkyl substances (PFAS). A couple of years
ago, at least 610 locations in 43 states were known to be affected by
PFAS contamination, which included drinking water systems serving an
estimated 19 million people.\3\ Research into the possible health
impacts of PFAS chemicals exposure has already unmasked many links to
adverse health outcomes. For example, research has revealed that PFAS
exposure may increase a woman's risk of pregnancy complications.\4\
However, there is still much to understand regarding the effects of
PFAS exposure, which is why the NIEHS continues to conduct research and
award grants to external organizations across the nation.
---------------------------------------------------------------------------
\3\ Based on data analysis by the Environmental Working Group and
Northeastern University. Walker, B., (6 May 2019). Mapping the PFAS
contamination crisis: New data show 610 sites in 43 states, EWG News
and Analysis, https://www.ewg.org/news-and-analysis/2019/04/mapping-
pfas-contamination-crisis-new-data-show-610-sites-43-states.
\4\ Broadfoot, M., (February 2020). Replacement chemicals may put
pregnancies at risk. Environmental Factor, NIEHS Newsletter, https://
factor.niehs.nih.gov/2020/2/science-highlights/replacement/index.htm.
---------------------------------------------------------------------------
Growing the Environmental Health Science Workforce
To further expand the world's understanding of environmental
impacts on human health and disease and support interdisciplinary
scientific research, the NIEHS provides training and educational
opportunities for students of all ages-from the high school and
undergraduate levels to graduate students and faculty. For example, the
NIEHS Medical Student Research Fellowship program provides medical
students an opportunity to train in environmental health-related
research for a year at the NIEHS.\5\ The NIEHS also awards NIH Summer
Research Experience Program (R25) grants that give high school and
college students and science teachers an opportunity to gain valuable
research experience at a higher education institution during the
summer.\6\
---------------------------------------------------------------------------
\5\ See, NIEHS Medical Student Research Fellowships, https://
www.niehs.nih.gov/careers/research/med-students/index.cfm.
\6\ See, the NIH Summer Research Experience Programs (R25), https:/
/www.niehs.nih.gov/research/supported/irt/summer_research/index.cfm.
---------------------------------------------------------------------------
conclusion
At a time when our nation is recovering and has many pressing
priorities that need to be addressed, the future of the U.S. will be
strengthened by strong and sustained investments in the full scope of
our research enterprise-including new, innovative research regarding
the impact of environmental factors on human health generated by the
NIEHS. AGU appreciates the Subcommittee's leadership in this area, as
well as the opportunity to submit this testimony. Thank you for your
thoughtful consideration of our request.
[This statement was submitted by Michael Villafranca, Senior
Specialist, Science Policy & Government Relations.]
______
Prepared Statement of the American Geriatrics Society
The American Geriatrics Society (AGS) greatly appreciates the
opportunity to submit this testimony. The AGS is a national non-profit
organization of nearly 6,000 geriatrics healthcare professionals and
basic and clinical researchers dedicated to improving the health,
independence, and quality of life of all older Americans. As the
Subcommittee works on its fiscal year (FY) 2021 Labor, Health and Human
Services, and Related Agencies Appropriations Bill, we ask that you
prioritize funding for the geriatrics education and training programs
under 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 2022:
--At least $105.7 million to support the GWEP and GACA program (PHS
Act Title VII, Sections 750 and 753(a))
--An increase of no less than $3.3 billion over the enacted FY 2021
level in the FY 2022 budget for total spending at NIH for
current institutes and operations; a minimum increase of $500
million to invest in biomedical, behavioral, and social
sciences aging research efforts across NIH; and a minimum
increase of $289 million for research on Alzheimer's disease
and related dementias over the enacted FY 2021 level in the FY
2022 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 more than double from 54.1 million today \1\ to more than
94 million by 2060,\2\ while those 85 and older is projected to more
than triple from 6.4 million today to 19 million by 2060.\3\ 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.
---------------------------------------------------------------------------
\1\ U.S. Census Bureau. 2019 American Community Survey 1-Year
Estimates Subject Tables. Available at https://data.census.gov/cedsci/
table?q=S0101&tid=ACSST1Y2019.S0101&hide
Preview=false.
\2\ U.S. Census Bureau. An Aging Nation: Projected Number of
Children and Older Adults. Available at https://www.census.gov/library/
visualizations/2018/comm/historic-first.html. Published March 13, 2018.
\3\ Ibid.
---------------------------------------------------------------------------
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 $105.7 million)
Our healthcare workforce receives little, if any, training in
geriatric principles,\4\ which leaves us ill-prepared to care for older
Americans as health needs evolve, especially during the current COVID-
19 public health emergency. 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
2021 levels would help ensure that HRSA receives the funding necessary
to expand these critically important programs commensurate with the
increasing need.
---------------------------------------------------------------------------
\4\ 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.
---------------------------------------------------------------------------
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 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 three-year grants provided to awardees in 29
states. In 2019, HRSA funded a second cohort of 48 GWEPs across 35
states and two territories (Guam and Puerto Rico) and provided
extension grants to 15 former GWEP awardees.
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 four 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.
Most recently, the GWEPs and GACAs have been an asset for states as
many states and localities grapple with the rollout of the COVID-19
vaccine and address vaccine hesitancy. GWEPs have been staffing call
lines to assist older adults to register for the vaccine, advising
local authorities on making the sign-up websites age-friendly, and
working with health systems to participate in the rollout and outreach
to vulnerable and hard-to-reach populations, preventing widening the
health disparity gap exacerbated by the pandemic. Looking forward,
these programs will be 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 2022
appropriation of at least $105.7 million for the GWEP and GACA program.
This increase in funding over FY 2021 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. As
laid out in President Biden's American Jobs Plan, 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.
research funding initiatives
National Institutes of Health/National Institute on Aging (additional
$500 million for aging research efforts and a minimum increase
of $289 million for Alzheimer's disease and related dementias
research)
The institutes that make up the NIH, and specifically the NIA, lead
the national scientific effort to understand the nature of aging and to
extend the healthy, active years of life. As a member of the Friends of
the NIA (FoNIA), a broad-based coalition of aging, disease, research,
and patient groups committed to the advancement of medical research
that affects millions of older Americans--the AGS urges you to include
an increase of at least $500 million in the FY 2022 budget for
biomedical, behavioral, and social sciences aging research efforts
across NIH and a minimum increase of $289 million for research on
Alzheimer's disease and related dementias over the enacted FY 2021
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.\5\ Further, chronic diseases related to aging, such as
diabetes, heart disease, and cancer continue to afflict 80 percent of
people age 65 and older \6\ and account for more than 75 percent of
Medicare and other federal health expenditures.\7\ 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.
---------------------------------------------------------------------------
\5\ Alzheimer's Association. 2021 Alzheimer's Disease Facts and
Figures. Alzheimers Dement. 2021; 17(3):327-406. https://doi.org/
10.1002/alz.12328.
\6\ National Prevention Council. Healthy Aging in Action: Advancing
the National Prevention Strategy. Available at https://www.cdc.gov/
aging/pdf/healthy-aging-in-action508.pdf. Published November 2016.
\7\ Erdem, E, Prada, SI, Haffer, SC. Medicare Payments: How Much Do
Chronic Conditions Matter?. Medicare & Medicaid Research Review.
2013;3(2). http://dx.doi.org/10.5600/mmrr.
003.02.b02.
---------------------------------------------------------------------------
Additionally, the AGS supports no less than a $3.3 billion increase
over the enacted FY 2021 level in the FY 2022 budget for total spending
at NIH for current institutes and operations. 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, thank you for the opportunity to testify today. My name
is Dr. Keith Churchwell, and I am President of Yale New Haven Hospital
and a volunteer for the American Heart Association where I Chair the
National Advocacy Committee. As a cardiologist for over 25 years, a
hospital administrator who has worked in a number of roles across the
country to improve and expand care for our patients, along with more
than 20 years as a volunteer with the American Heart Association, I
understand firsthand the burden of heart disease as the world's leading
killer, and the importance of research and prevention.
I'm pleased to testify today on two specific opportunities to
improve Americans' health in the fiscal year (FY) 2022 Labor, Health
and Human Services, Education and Related Agencies appropriations bill.
I respectfully request you work over the next three years to triple the
budget of the Centers for Disease Control and Prevention (CDC) National
Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) to
$3.75 billion. I also respectfully request that, within this increase,
you provide $20 million in new funding to expand an existing COVID-19
Cardiovascular Disease (CVD) registry in partnership with NCCDPHP.
funding for the national center for chronic disease prevention and
health promotion
Chronic diseases represent 7 of the 10 leading causes of death,\1\
and account for 90% of the nation's $3.8 trillion in annual health care
costs.\2\ Heart disease remains the number one cause of death in the
United States, with approximately 655,000 individuals in America dying
from heart disease each year. In 2018, stroke accounted for about 1 of
every 19 deaths in the United States.\3\ Chronic diseases are best
managed by consistent access to health care services and treatments,
for example, a 10% increase in hypertension treatment could prevent
14,000 deaths each year.\4\
---------------------------------------------------------------------------
\1\ Centers for Disease Control and Prevention. Leading causes of
death. Morality in the United States, 2019. Accessed online February
17, 2021.
\2\ Buttorff C, Ruder T, Bauman M. Multiple Chronic Conditions in
the United States. Santa Monica, CA: Rand Corp.; 2017 and Martin AB,
Hartman M, Lassman D, Catlin A. National Health Care Spending In 2019:
Steady Growth for The Fourth Consecutive Year. Health Aff.
2020;40(1):1-11.
\3\ Heart Disease and Stroke Statistics-2021 Update: A Report From
the American Heart Association https://www.ahajournals.org/doi/10.1161/
CIR.0000000000000950.
\4\ Call to Action: Urgent Challenges in Cardiovascular Disease: A
Presidential Advisory From the American Heart Association, Mark
McClellan, MD, PhD, Nancy Brown, BS, Robert M. Califf, MD, MACC, John
J. Warner, MD, FAHA (2019) https://www.ahajournals.org/doi/10.1161/
CIR.0000000000000652.
---------------------------------------------------------------------------
My positions at Yale New Haven Hospital and the American Heart
Association have provided me a unique perspective on what individuals
and families need to prevent disease, cure illness, and manage chronic
health conditions, and I can personally attest to the importance of
cardiovascular disease prevention programs specifically supported by
the CDC. The burden of chronic disease is growing faster than our
ability to ameliorate the growth, putting an increasing strain on the
health care system, health care costs, our productivity, educational
outcomes, military readiness and well-being.\5\ Current funding for CDC
NCCDPHP falls far short of what is needed to prevent chronic disease,
slow its spread, and protect patients. The COVID-19 pandemic has only
exacerbated these challenges, and the underfunding of NCCDPHP has made
the nation more vulnerable to the pandemic. For example:
---------------------------------------------------------------------------
\5\ Heidenreich PA, Trogdon JG, Khavjou OA, et al. Forecasting the
future of cardiovascular disease in the United States: a policy
statement from the American Heart Association. Circulation.
2011;123:933-944.
---------------------------------------------------------------------------
--COVID-19 poses elevated health risks for people with chronic
conditions-including severe illness and death-and may lead to
heart failure, stroke, kidney failure, chronic lung disease,
blood pressure abnormalities, neurological conditions, and
other long-term health complications in people who have
survived the virus.
--Deaths from ischemic heart disease and hypertensive diseases in the
United States increased during the COVID-19 pandemic, while
globally, COVID-19 was associated with significant disruptions
in cardiovascular disease testing, diagnosis and timely
treatment.\6\
---------------------------------------------------------------------------
\6\ COVID-19 Pandemic Indirectly Disrupted Health Disease Care.
American College of Cardiology. January 11, 2021. Accessed online
February 17, 2021.
---------------------------------------------------------------------------
After more than a decade of stagnant funding, a congressional
commitment to triple CDC NCCDPHP's budget over the next three fiscal
years is long overdue to respond to the increasing threat chronic
diseases pose to Americans. A robust investment, appropriate to the
magnitude of the problem, will allow CDC NCCDPHP to fulfill its mission
by expanding the current patchwork of existing programs nationwide and
by implementing new programs to address emerging health challenges,
including the emerging chronic disease cohort of COVID-19 ``long-
haulers.''
covid-19 cardiovascular disease registry
Since the start of the pandemic, researchers have made great
advances in our knowledge of the disease characteristics, associated
health risks, and appropriate mitigation and treatment of COVID-19. We
have learned that COVID-19 has a disproportionate impact on patients
who face endemic inequities, such as lower paying and hourly wage jobs
deemed ``essential.'' Unstable or unsafe housing and decreased
availability of health care and insurance coverage also add to that
impact. COVID-19 has laid bare the health inequities that have long
affected communities of color in the United States as the burden of
COVID-19 remains higher among African Americans, American Indians/
Alaska Natives, Hispanics/Latinos, and Asian Americans and Pacific
Islanders, compared with whites.\7\
---------------------------------------------------------------------------
\7\ Lopez L, Hart LH, Katz MH. Racial and Ethnic Health Disparities
Related to COVID-19. JAMA. 2021;325(8):719-720. https://
jamanetwork.com/journals/jama/fullarticle/2775687.
---------------------------------------------------------------------------
In April 2020, the American Heart Association launched the COVID-19
Cardiovascular Disease (CVD) Registry, which captures data on
hospitalized COVID-19 patients' clinical characteristics, medications,
treatments, biomarkers and outcomes, and focuses on real-time, granular
data from acute care hospitals to better help clinicians and
researchers understand and provide feedback on how to best treat COVID-
19 patients. To date, the COVID-19 CVD Registry includes nearly 170
hospitals and health systems across 35 states, reporting more than
40,000 adult COVID-19 patient records. Approximately 50 percent of the
registry patients identify as Black or Hispanic, making the registry
representative of communities disproportionately affected by the
pandemic.
According to initial research based on the COVID-19 CVD registry
data, obese patients experienced some of the worst outcomes of all
patients hospitalized with COVID-19, including increased risks for
blood clots, the need for breathing assistance and dialysis, and death.
Research has already found that patients with COVID-19 who are
hospitalized with a stroke have worse outcomes than stroke patients
without COVID-19. We are also now beginning to understand the long-term
health implications of COVID-19 in the population referred to as
``long-haulers.'' These patients have an increased risk of developing
myocarditis, or inflammation of the heart, that can lead to heart
failure, thromboembolic disease or blood clots, and other lingering
health conditions.
Additional funding is needed to expand the registry infrastructure
nationally to enhance geographic representation for both urban and
rural hospitals. A more robust, representative registry will provide
clinicians and researchers with the tools to advance our understanding
of post-COVID syndromes and provide much needed insights into this new
chronic disease cohort. Once expanded, this registry also will provide
an at-the-ready, adaptable infrastructure to respond to new and
emerging public health threats. Therefore, within the new funding
provided to the CDC NCCDPHP, the American Heart Association
respectfully requests that the Committee provide $20 million to expand
the COVID-19 CVD registry nationwide to include hundreds more
hospitals-including sole community hospitals, safety net hospitals, and
disproportionate share hospitals-and support CDC NCCDPHP in collecting,
curating, analyzing, and publishing the registry data.
As the pandemic has demonstrated, chronic diseases and infectious
diseases are inextricably linked. Therefore, any efforts to improve
pandemic preparedness and prevent the spread of infectious disease must
also include efforts to prevent chronic disease, address health
disparities, and ultimately, improve underlying health and wellness for
all. A significant investment in NCCDPHP is essential to that goal. We
must make these investments if we are to preserve health, well-being,
productivity, and longevity for all in America. I thank you for the
opportunity to offer my perspective today, and for your continued
leadership.
______
Prepared Statement of the American Indian Higher Education Consortium
On behalf of the nation's 37 Tribal Colleges and Universities
(TCUs), which collectively are the American Indian Higher Education
Consortium (AIHEC), we thank you for the opportunity to share our FY
2022 funding requests. The following is a list of recommendations
including Department, program, and funding requests.
Department of Education--Office of Postsecondary Education
--Strengthening Institutions HEA Title III--Part A (Sec. 316):
$53,080,000 (discretionary)
--Perkins Career and Technical Education Programs (Sec. 117):
$15,000,000
Department of Education--Office of Indian Education
--Indian Education Professional Development Program: $20,000,000
Department of Health and Human Services
--Administration for Children and Families/Office of Head Start
TCU-Head Start Partnership Program: $8,000,000 in existing funds
Tribal Colleges and Universities: Serving Students Across Indian
Country and Rural America
Currently, 37 TCUs operate more than 75 campuses and sites in 16
states. TCU geographic boundaries encompass 80 percent of American
Indian reservations and federal Indian trust lands. American Indian and
Alaska Native (AI/AN) TCU students represent more than 230 federally
recognized Tribes and hail from more than 30 states. Nearly 80 percent
of these students receive federal financial aid, and 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 FY 2022
funding requests.
u.s. department of education
Strengthening Tribal Colleges (HEA Title III--Part A--Section 316):
TCUs urge the Subcommittee to provide $53,080,0000 for the
Strengthening Tribal Colleges program (HEA Title III-Part A). The
Strengthening Institutions HEA Title III program for TCUs (Section 316)
is specifically designed to address the critical, unmet needs of AI/AN
students and their communities. Through this program, TCUs are able to
provide student support services, Native language preservation, basic
upkeep of campus buildings and infrastructure, critical campus
expansion, enterprise management systems, faculty for core courses, and
other necessary elements for a quality educational experience. The
Strengthening Institutions program provides formula-based aid to 35
TCUs through two funding sources: Part A discretionary funding (FY
2021, $38.08 million) and Part F mandatory funding (FY 2020, $28.2
million). In 2019, TCUs feared losing nearly half of Title III funding
with the anticipated expiration of Part F funding. Fortunately, the
``Fostering Undergraduate Talent by Unlocking Resources to Education
Act (P.L. 116-91) was signed into law on December 20, 2019, permanently
authorizing Part F mandatory funding at $30 million for TCUs. Part A
and Part F of the Title III program are essential in supporting
institutional development and student services. AIHEC strongly supports
the President Budget Request for FY 2022, and we urge the Subcommittee
to fund these programs at the President's requested levels: HEA Title
III Part A (discretionary funding) at $53,080,000 and HEA Title III
Part F (mandatory funding) at $89,000,000.
Carl D. Perkins Career and Technical Education Programs
Tribally Controlled Postsecondary Career and Technical
Institutions: AIHEC requests $15,000,000 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 FY 2020, 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 FY 2022.
u.s. department of health and human services programs
Administration for Children and Families--Office of Head Start:
Tribal Colleges and Universities Head Start Partnership Program: AIHEC
requests $8,000,000 for the TCU-Head Start Partnership program. The
TCU-Head Start Partnership program was re-established with the
designation of $4,000,000 within the FY 2020 LHHS appropriations bill
and continued with $4,000,000 within the FY 2021 LHHS appropriations
bill. TCUs have had marked success in training early childhood
educators and Head Start teachers who are urgently needed across Indian
Country. In 2017, 74.5 percent of Head Start teachers nationwide held a
bachelor's degree as required by federal law; but less than 42 percent
of Head Start teachers met the requirement in Indian Country (Head
Start Region 11); only 70 percent of workers in Region 11 met the
associate-level requirements or were enrolled in associate's degree
programs, compared to 90 percent nationally. TCUs are the most cost-
effective way for filling this gap. From 2000 to 2007, the U.S.
Department of Health and Human Services provided modest funding for the
TCU-Head Start Program (42 U.S.C. 9843g), which helped TCUs build
capacity in early childhood education by providing scholarships and
stipends for Indian Head Start teachers and teacher aides to enroll in
TCU early childhood/elementary education programs. Before the program
ended in 2007 (ironically, the same year that Congress specifically
authorized the program in the reauthorization of the Head Start Act),
TCUs had trained more than 400 Head Start workers and teachers, many of
whom have since left for higher paying jobs in elementary schools.
Today, TCUs such as Salish Kootenai College (Pablo, MT) are providing
culturally based early childhood education free of charge to local Head
Start professionals. In Michigan, Bay Mills Community College provides
online education programming for $50/credit to Head Start staff
nationwide. However, many Head Start programs in Indian Country are
paying far more for other sources to provide training. With the
restoration and continuation of this modestly funded program, TCUs can
aid in building an early childhood education workforce to better serve
the education needs of AI/AN children.
Substance Abuse and Mental Health Services Administration (SAMHSA)
NEW Tribal College and University Centers for Excellence in
Behavioral Health/Substance Abuse Prevention: AIHEC requests
$10,000,000 to establish this program. The goal of the TCU Centers of
Excellence program, similar to an existing SAMHSA program for HBCUs, is
to grow a highly skilled and culturally competent AI/AN behavioral
health workforce by developing an apprenticeship-based network of TCUs
and partners from the health industry and local, Tribal, state, and
regional providers. The TCU Centers of Excellence would share best
practices in curriculum development, program implementation, and
apprenticeships; recruit students to careers in behavioral health
fields to address mental and substance use disorders; provide job
training in behavioral health fields; and prepare students to earn
credentials in behavioral health fields. The TCU Centers of Excellence
would emphasize education, awareness, workforce training, and
preparation for careers in mental and substance use treatment,
prevention, and research, including addressing opioid abuse prevention,
opioid use disorder treatment, serious mental illness, and suicide
prevention.
conclusion
Tribal Colleges and Universities provide thousands of AI/AN
students with access to high-quality, culturally appropriate,
postsecondary education opportunities, including critical early
childhood education and behavioral health programs. The modest federal
investment in TCUs has paid great dividends in terms of employment,
education, and economic development. We ask you to renew your
commitment to help move our students and communities toward self-
sufficiency and request your full consideration of our FY 2022
appropriations requests. Thank you.
______
Prepared Statement of the American Liver Foundation
summary of fiscal year 2022 appropriations recommendations
_______________________________________________________________________
--Provide the National Institutes of Health (NIH) with at least $46.1
billion and provide individual NIH Institutes and Centers, such
as NIDDK, NIMHD, and NCI with proportional discretionary
increases.
--Please support establishment and adequate funding for the new
Advanced Research Projects Agency for Health (ARPA-H) at
NIH as proposed in the Administration's Budget Request to
Congress to facilitate robust scientific progress on
cancers and other conditions.
--Provide the Centers for Disease Control and Prevention (CDC) with
at least $10 billion to facilitate timely public health efforts
along with proportional increases for CDC Centers and
Divisions, such as NCCDPHP and NCHHSTP.
--Please provide $134 million for the Division of Viral Hepatitis
at CDC.
--Please provide $120 million for the Opioid and Infectious
Diseases Program at CDC.
--Please provide $5 million for the new Chronic Disease Education
and Awareness Program at CDC.
--Provide the Health Resources and Services Administration (HRSA)
with a funding level of at least $9.2 billion and ensure that
the agency has sufficient resources to enhance organ donation
through awareness activities and partnerships.
--Please support timely committee recommendations on liver diseases
and health disparities, NASH/NAFLD, organ donation, and related
areas.
_______________________________________________________________________
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 NIH, provided over recent years. Please maintain
this commitment and further enhances support for public health programs
as you work on appropriations for Fiscal Year (FY) 2022. Thank you
again.
about the foundation
Founded in 1976, the American Liver Foundation (ALF) is the
nation's largest patient advocacy organization for people with liver
disease. ALF reaches more than?4?million individuals each year with
health information, education and support services via its national
office and an active online presence. Recognized as a trusted voice for
liver disease patients, ALF also operates a national toll-free helpline
(800-GO-LIVER), educates patients, policymakers and the public, and
provides grants to early-career researchers to help find a cure for all
liver diseases. ALF is celebrating more than 40 years of turning
patients into survivors. For more information about ALF, please visit
liverfoundation.org.
liver facts
The liver is one of the body's largest organs, performing hundreds
of functions daily including, removal of harmful substances from the
blood, digestion of fat, and storing of energy. Non-alcoholic fatty
liver disease (NAFLD), hepatitis C, and heavy alcohol consumption are
the most common causes of chronic liver disease or cirrhosis (severe
liver damage) in the U.S. Approximately 30% of adults and 3-10% 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. 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. Since there is tremendous
demand in this area, and no shortage of quality opportunities for CDC,
we ask that funding be systematically increased with $5 million
provided for FY 2022.
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% increase in rates of
hepatitis C among 20--29 year olds an 300% increase among 30--39 year
olds. A few years ago, the elimination initiative was established at
CDC, and the current funding level is $13 million. We ask that this
allocation be systematically increased along with the annual funding
for the Division of Viral Hepatitis 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 five 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 ten 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% of people age 18 and over have enrolled in the New York State
Donate Life Registry. But every ten minutes another person is added to
the national transplant waiting list. We need to encourage more people
to sign up to donate organs.
(David).--In October 2014 my mother Geraldine passed away after a
very brief and completely unexpected battle with late-stage NASH. They
call NASH the ``silent killer'' and in Mom's case it was certainly
true; she was never diagnosed with any form of liver disease at all
before NASH. We had noticed some yellowing of her eyes and convinced
her to go to the doctor about a month earlier, but it took time to get
an appointment with a specialist, who checked her into a hospital upon
the visit. I founded NASHAWARE.com to help raise awareness and educate
others. If I can help even a few people it will all be worth it. But I
still want to do much more.
[This statement was submitted by Lorraine Stiehl, Chief Executive
Officer,
American Liver Foundation.]
______
Prepared Statement of the American Lung Association
summary of fiscal year 2022 appropriations recommendations
_______________________________________________________________________
$10 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 $5 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 $35 million for CDC's National Asthma Control Program
(NACP)
$46.1 billion for the National Institutes of Health (NIH)
--Provide $3.94 billion for the National Heart, Lung, and Blood
Institute
--Support establishment of, and adequate funding for, the new
Advanced Research Projects Agency for Health (ARPA-H) at NIH
_______________________________________________________________________
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 DeLauro, Ranking Member Cole, 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 Fiscal Year (FY) 2022. The American Lung
Association also asks for your leadership in opposing all policy riders
that would weaken key lung health protections.
The COVID-19 pandemic has underscored 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, funding for CDC has remained
stagnant, and the failure to adequately invest has become evident
during the public health emergency that has taken the lives of over a
half a million people in the US. We ask that CDC funding be increased
to at least $10 billion for fiscal year 2022. 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 shows that long-
term exposure to air pollution leads to 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 and respond to 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 FY22, 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 programs at CDC.
Provide $10 billion for the Centers for Disease Control and
Prevention (CDC): The nation is relying on CDC more than ever before.
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 $10
billion for CDC for FY22 and sustained, robust and predictable funding
moving forward annually.
Provide $3.75 billion for National Center for Chronic Disease
Prevention and Health Promotion (NCCDPHP): In 2019, COPD was one of
seven chronic diseases included in the top 10 causes of death in the
United States. 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% 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 three years (FY22-
FY24). 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 COVID-19 ``long-haulers.'' 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 $7.5
million increase in funding for OSH in FY21 and asks for an additional
$72.5 million for FY22. 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 $5 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. 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 FY21. In FY22, the Lung Association asks for
this program to be increased to $5 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 standalone 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 provides guidance
to states in adaptation. Currently, projects in 16 states and two city
health departments develop and implement health adaptation plans and
address gaps in critical public health functions and services.
Unfortunately, the level of investment thus far has been insufficient
for this program to reach its full, possibly lifesaving, potential. The
President's budget requests $110 million, which would allow CDC to
implement a 50-state climate and health program.
Provide $35 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. Additional
funding would allow approximately four to five additional states beyond
the current 25 states and localities to be funded to implement these
lifesaving programs.
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. The
National Immunization Program must receive strong and sustained
funding. The Lung Association asks for $1.13 billion for NCIRD to
enhance COVID19 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 $46.1 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.
Thank you for your consideration of our recommendations. Below
please find a vignette demonstrating the importance of CDC programs.
sharon l. from oklahoma: lung cancer & covid-19 survivor
``I now live with cancer. I am not a cancer patient; I am a patient who
has cancer.''
Sharon was diagnosed with Stage 4 lung cancer in October 2015.
After six rounds of aggressive chemotherapy, followed by another two
rounds shortly thereafter, Sharon is currently six years out from her
diagnosis and living without the need for additional treatment. This
past year, Sharon became one of the over 32 million individuals in the
United States diagnosed with COVID-19.
``I can't emphasize how important funding for the CDC is. Having
had COVID, it is even more important, but it has always been important
to me.''
Sharon and husband tenaciously fought to quit smoking, her husband
with the help of a CDC-funded quitline, and they were ultimately
successful in doing so. From her experiences, Sharon believes that
public health programs are critical to raising awareness about lung
cancer prevention and increasing tobacco cessation.
``What the CDC does with smoking cessation is vitally important, so
people don't end up like me, thinking they have 14 months to live and
watching every plan they have for growing old with their husband flash
before their eyes. It is vitally important. Public health is important
for everybody. You either pay for it now, or you pay for it at the end.
And it always costs more at the back end than now.''
michigan asthma prevention and control program (miapcp)
Michigan is one of the 23 states that receive funding through the
National Asthma Control Program (NACP). Through funding from CDC,
Michigan was able to create the Asthma Initiative of Michigan website,
www.GetAsthmaHelp.org, which enables access to a plethora of resources
for those struggling with asthma. The MiAPCP has also worked to
facilitate and support Managing Asthma Through Case-Management in Homes
(MATCH) throughout parts of Michigan with the highest burden of asthma.
Through MATCH programs, individuals can benefit from home visits, an
environmental assessment, access to a certified asthma educator, and a
physician care conference. As a result, Michigan saw a 60% decrease in
asthma-related emergency room visits, 82% decrease in hospitalizations
and a 58% decrease in the number of children who missed one or more
school days due to asthma.
``Interventions and policy efforts by our program that impact
asthma care and environments cannot be sustained without CDC's
support.''
--John Dowling, Lead Asthma Coordinator of the MiAPCP
Most recently, MiAPCP launched a cohesive effort to improve asthma
surveillance and data collection.
[This statement was submitted by Harold P. Wimmer, National
President and CEO, American Lung Association.]
______
Prepared Statement of the American Massage Therapy Association
The American Massage Therapy Association (AMTA) appreciates the
opportunity to submit written testimony for the record to the Senate
Subcommittee on Labor, Health and Human Services, and Education
Subcommittee in support of continued robust funding in FY 2022 for the
National Center for Complementary and Integrative Health (NCCIH) within
the National Institutes of Health (NIH) as well as for suggested report
language for both NCCIH as well as the Centers for Disease Control
(CDC).
Established in 1943 and numbering over 95,00 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.
We appreciate and acknowledge the Committee's ongoing support for
massage therapy, including past report language urging the adoption of
recommendations from the groundbreaking and widely supported 2019 HHS
final report from the Pain Management Best Practices Task Force (Task
Force). Unfortunately, most recommendations from that task force--
including those that support inclusion of massage therapy and other
integrative and complementary health treatments for pain--have still
not been adopted.
COVID-19 has exacerbated the already existing public health crisis
of acute and chronic pain from delayed access to health care, as well
as a rise in substance abuse and overreliance on opioids. We encourage
the Committee to include report language in the FY 2022 bill that
focuses on the need for greater public awareness on treatment options
for pain that include complementary and integrative approaches such as
massage therapy. We request the Committee to direct NIH to coordinate
with the DoD and VA to launch a much-needed public awareness campaign
about these non-opioid treatment options and to widely disseminate the
Task Force recommendations to health care providers and public health
stakeholders. Last, we request the Committee's continued support to
direct all relevant HHS agencies to update their pain management
practices to reflect the Task Force recommendations, including those
that support massage therapy.
We also support the inclusion of report language accompanying the
FY 2022 bill that would direct the CDC to collect and publish
population research data that provides a comprehensive assessment of
the nature of pain management, who is affected by pain, and direct and
indirect costs to society related to pain.
Over recent years, research continues to increase support for
massage therapy, which has thus increased policymakers' awareness of
the benefits of massage therapy as a non-pharmacologic alternative to
opioid use to manage pain. As noted above, massage is specifically
addressed throughout the 2019 Task Force report and is even included in
the Task Force ``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. Finally, CMS includes massage therapy provided by a state
licensed massage therapist as a supplemental benefit for pain
management in Medicare Advantage plans, and massage is also a covered
benefit for our nation's veterans and active-duty military personnel.
Despite the demonstrated value and efficacy of massage therapy
through research, we know that more needs to be done. As recently as
last August, a national survey of 1,581 people with pain indicated that
massage therapy is the most desired treatment for pain (at 48.4%,
followed by pain physician at 32.9% and acupuncture at 29%), but
unfortunately a majority of those surveyed indicated that cost
prevented them accessing massage therapy. This underscores the
disconnect between the best practices that already exist in pain
management and those that are realistically available to patients, due
to cost and lack of 3rd party insurance coverage, as well as
insufficient provider awareness of the benefits of massage and other
complementary therapies.
For over 30 years, the Massage Therapy Foundation (MTF) a 501(c)
(3) organization, working with AMTA, has provided over $1 million in
research grants studying the science behind therapeutic massage. This
seed money has funded needed research on a wide range of topics
including: the benefits of massage therapy for pediatric populations,
patients with heart failure, and those with muscle atrophy, among
others. Many of these efforts have been specifically designed to
include racially diverse and underserved populations.
We know that massage therapy can improve health outcomes and is
also among the most cost-effective therapies that can save health care
expenditures in the long run. Massage therapy demonstrably reduces or
mitigates reliance on opioids to address pain. Massage therapy can
serve as a 'portal' to increase patient involvement in other important
health activities, e.g. research shows that patients who obtain massage
are more likely to be able to move better, and thus engage in other
physician-prescribed activities such as corrective exercise programs.
We encourage a sustained and robust finding stream for NIH and
NCCIH that supports the role of integrative therapies to help mitigate
opioid abuse and misuse, and which will enable continued advancements
in the use of non-pharmacologic therapies such as massage.
Thank you for your consideration, and AMTA would be happy to
provide more information as needed.
Sincerely,
James Specker, AMTA Director, Industry and Government Relations at
[email protected].
______
Prepared Statement of the American National Red Cross and
the United Nations Foundation
Chairwoman Patty Murray, Ranking Member Roy Blunt, and Members of
the Subcommittee on Labor, Health and Human Services, Education and
Related Agencies, the American Red Cross and the United Nations
Foundation appreciate the opportunity to submit testimony. We are
writing to request that Congress invest $60 million for CDC's global
measles and rubella elimination efforts for fiscal year 2022.
The American Red Cross and United Nations Foundation recognize the
leadership that Congress has shown in funding CDC in prior years and
urge Congress to protect the CDC's funding necessary for their global
measles elimination activities for FY2022 at $60 million, which is part
of the overall Global Immunization Division line.
covid-19 environment
COVID-19 has had an unprecedented impact on global immunization
programs. As of June 1st twenty-three measles and rubella vaccination
campaigns that were scheduled for 2020 continue to be postponed as a
result of the COVID-19 pandemic, leaving an estimated one hundred and
thirty-five million children unvaccinated and vulnerable to the
diseases. This growing immunity gap is creating a looming cliff in
global public health, as social distancing measures are lowered, the
measles virus will quickly spread amongst unvaccinated individuals and
communities. 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,
and increasing the likelihood of the virus infecting U.S. communities.
Investments that will quickly close these global immunity gaps will
help to ensure that gains made in reducing maternal and child mortality
and morbidity are maintained, and that the global health infrastructure
established through these investments is preserved and strengthened.
Among other benefits, this global health architecture is vital to
protecting global health security. Measles investments have established
networks of laboratories around the world capable of processing
diagnostics, and has bolstered the global public health workforce of
trained professionals and volunteers who are often the first responders
during health crises. During the pandemic, for instance, these assets
and infrastructure investments were pivoted to detect and test cases of
COVID-19, giving vulnerable countries a head start in their pandemic
response. 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 saved the lives of 25.5 million children
between 2000 and 2019, with the Measles & Rubella Initiative driving
measles deaths down by 62%.
Measles is a highly contagious disease that can cause blindness,
swelling of the brain, and death. Nine out of ten people who are not
immune to measles will contract the disease if they come into contact
with a contagious person, and there are long-term damages to the immune
system for those who contract the virus. The rubella virus is a leading
infectious cause of birth defects in the world despite availability of
an affordable, effective vaccine since 1969. Every day, roughly 567
children still die of measles-related complications. When rubella
occurs early in a pregnancy, it can cause miscarriages, stillbirths, or
a constellation of severe birth defects 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 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.
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 have
been linked to importation of the disease by unvaccinated U.S.
residents returning from trips to Israel and Ukraine. Controlling
measles and rubella around the world reduces the likelihood of similar
disease importations in the future.
Responding to measles outbreaks is resource intensive and costly
for health systems, including in the U.S. In a literature review that
included 10 studies on measles outbreaks from 2001 to 2018 in the U.S.,
researchers estimated the cost per case to range from about $7,000 to
$76,000 and the total cost per outbreak ranged from $10,000 to $1
million. A recent study of a 72-case outbreak in the U.S. cost local
public health and government authorities an estimated $3.4 million for
response activities, medical costs, and productivity losses.
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
nearly 3 billion individuals in over 90 countries since 2001, saving
the lives of more than 25.5 million children. In part due to M&RI,
global measles mortality has dropped 62%, from an estimated 545,000
deaths in 2000 to an approximately 207,000 in 2019 (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 57%.
Despite these gains, we continue to see unfortunate and preventable
deaths and complications due to both measles and rubella. In 2019,
every day approximately 567 children died of measles-related
complications. These deaths could have been prevented with a safe,
effective, and inexpensive vaccine that is typically available for less
than $2 USD in lower income countries, which protects against both
measles and rubella.
Thanks to M&RI leadership, most measles vaccination campaigns have
been able to reach more than 90% of their target populations. 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 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. 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%. 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
Since FY 2001, 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. Funding for measles and rubella
globally has remained level since FY 2010 at $50 million dollars. 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. The CDC plays an essential role within
this space 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 are needed to prevent needless childhood deaths
around the globe.
In 2019, thanks in part to U.S. funding, M&RI supported 62
immunization campaigns in 53 countries, resulting in the vaccination of
nearly 203 million children. 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.
Since FY10, the CDC's measles and rubella elimination program has
been funded at approximately $50 million. In FY 2022, the American Red
Cross and United Nations Foundation respectfully request an increase of
$10 million to raise funding to $60 million. This investment will allow
CDC to help countries to close the immunization gap created by COVID-
19, safeguard the progress made over the last decade and protect
Americans by preventing measles cases and deaths in the U.S. The CDC
Global Immunization Division, through which the Measles & Rubella
Initiative 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. We respectfully request $60 million for CDC's measles
elimination activities, as part of the overall funding for the entire
Global Immunization Division account in FY2022.
Thank you for the opportunity to submit testimony, and for your
continued commitment to ending preventable death and disability from
measles and rubella.
[This statement was submitted by Koby J. Langley, Senior Vice
President,
International Services and Service to the Armed Forces, American
National Red Cross and Peter Yeo, Senior Vice President, United Nations
Foundation.]
______
Prepared Statement of the American Nurses Association
The American Nurses Association (ANA), representing the interests
of the nation's 4.2 million registered nurses, thanks Chair Murray,
Ranking Member Blunt, and the U.S. Senate Appropriations Subcommittee
on Labor, Health and Human Services, Education and Related Agencies for
the opportunity to provide written testimony for Fiscal Year (FY) 2022.
ANA is committed to advancing the nursing profession by fostering
high standards of nursing practice, promoting a safe and ethical work
environment, bolstering the health and wellness of nurses, and
advocating on health care issues that affect nurses and the public. ANA
is at the forefront of improving quality of health for all.
nursing workforce and health equity
Investments in the Title VIII Nursing Workforce Development
Programs are essential to ensuring nurses and nursing students have the
resources to tackle our nation's health care needs, remain on the
frontlines of the COVID-19 pandemic, and be prepared for the public
health challenges of the future. Funding for Title VIII has become even
more crucial during the pandemic, 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.
ANA believes there are multiple policy levers to eliminate or
reduce health disparities. Our Principles for Health System
Transformation \1\ call for expanded access to care through universal
coverage and other steps to improve the quality and affordability of
health care. We also believe policymakers must consider and account for
an adequate health care workforce of the future. The nursing workforce,
in particular, can play a tremendous role in efforts to create a more
equitable health care system. Nurses provide the type of care and
coordination that can help people manage their chronic conditions,
including links to community resources they need to be healthy.
Registered nurses and advanced practice registered nurses are often the
backbone of health care delivery in rural and underserved areas,
providing access to primary care, maternity care, and prevention. These
roles should be strengthened through meaningful reforms.
---------------------------------------------------------------------------
\1\ https://www.nursingworld.org/4afd6b/globalassets/
practiceandpolicy/health-policy/principles-
healthsystemtransformation.pdf.
---------------------------------------------------------------------------
Expanding the minority health care workforce would be one of the
most meaningful steps we could take to improve access and health care
in African American population groups. We know that positive patient
experience and trust in health care providers can be powerful drivers
of health outcomes. The National Sample Survey of Registered Nurses
recently reported an increase in the minority nursing workforce between
2008 and 2018.\2\ This is encouraging, but there is a long way to go.
An increased funding in minority nursing education, to develop a
workforce that is more reflective of the patient population would be a
first step in the right direction.
---------------------------------------------------------------------------
\2\ https://bhw.hrsa.gov/data-research/access-data-tools/national-
sample-survey-registered-nurses.
---------------------------------------------------------------------------
ANA is a member of the Nursing Community Coalition which is
comprised of 63 national nursing organizations who collectively
represent the cross section of education, research, practice, and
regulation within the nursing profession. Together, we respectfully
request 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) in FY
2022.
public health infrastructure
The nation's public health infrastructure and workforce have been
underfunded for decades, and we have witnessed the highlighted impacts
of this chronic underfunding throughout the COVID-19 public health
emergency. Federal funds for state, local, and tribal public health
preparedness shrunk from $940 million in 2002 to $675 million in
2019.\3\ During the same time period, hospital emergency preparedness
was cut by nearly fifty percent, from $515 million in 2004 to $265
million in 2019. This has resulted in a loss of 55,000 public health
workers since 2008. The current COVID-19 public health emergency has
underscored that our nation must be better equipped with preparedness
and response personnel, measures and processes. A robust public health
infrastructure and workforce is not only important during the time of
crisis, but generally to address the overall health and well-being of
our population.
---------------------------------------------------------------------------
\3\ https://www.tfah.org/wp-content/uploads/2020/04/
TFAH2020PublicHealthFunding.pdf.
---------------------------------------------------------------------------
The public health nursing workforce touches every aspect of health
care and community well-being. Unfortunately, we can only imagine how
different the coronavirus response would have been had greater federal
public health infrastructure investment afforded availability of
sufficient numbers of nurses and other public health personnel in areas
of the greatest need. Nurses could have played an enhanced role in
encouraging and administering COVID-19 tests in high-risk populations,
conducting contact tracing at an effective pace, educating the public
about vaccine safety and all facets of COVID-19 prevention and
mitigation, informing school opening protocols, and collecting data for
feedback to pandemic response efforts.
mental health
Nurses, particularly those early in their career, continue to feel
exhausted and overwhelmed. According to the findings of an American
Nurses Foundation survey of nearly 13,000 nurses, 51 percent of nurses
surveyed continue to feel exhausted and 43 percent report feeling
overwhelmed. A breakdown of findings demonstrates that the mental
health of early-career nurses, 34 and under, is impacted most, with 81
percent reporting they are exhausted, 71 percent saying they are
overwhelmed, and 65 percent who report being anxious or unable to
relax. Nurses who are 55 and older reported some strain on their mental
health, with 47 percent reporting feeling exhausted and 31 percent
reporting they had a desire to quit.\4\
---------------------------------------------------------------------------
\4\ https://www.nursingworld.org/practice-policy/work-environment/
health-safety/disaster-preparedness/coronavirus/what-you-need-to-know/
mental-health-and-wellness-survey-2/.
---------------------------------------------------------------------------
ANA is a member of the Mental Health Liaison Group. We count the
American Psychiatric Nurses Association as a premier Organizational
Affiliate and many psychiatric nurses as members. We request that the
Committee approve the appropriations request put forward by the Mental
Health Liaison Group for FY 2022 for mental health and addiction
policies and programs.\5\
---------------------------------------------------------------------------
\5\ https://www.mhlg.org/wordpress/wp-content/uploads/2021/04/MHLG-
FY2022-Approps-Request-Final-4.7.21.pdf.
---------------------------------------------------------------------------
minority fellowship program
ANA supports funding and expanding the Minority Fellowship Program
(MFP), which is currently administered by the Substance Abuse and
Mental Health Services Administration (SAMHSA).\6\ The program provides
scholarships to minority mental health and addiction professionals in
nursing, but also in the fields of psychiatry, psychology, social work,
marriage and family therapy, counseling and addictions. The program's
mission is to increase the number of culturally competent behavioral
health professionals who provide mental health and substance use
disorders services to underserved populations.
---------------------------------------------------------------------------
\6\ https://www.samhsa.gov/minority-fellowship-program/about.
---------------------------------------------------------------------------
The MFP was created in 1974 to provide fellowships to minority
mental health professionals, and, since then, more than 4,400
fellowships have been issued to nurses, psychiatrists, psychologists,
social workers, marriage and family therapists, counselors, and
addiction specialists. According to HHS, minorities are less likely to
receive diagnosis and treatment for their mental illness, have less
access to and availability of mental health services, and often receive
a poorer quality of mental health care. The MFP is the only federal
program financing culturally competent mental health and substance use
disorders professionals.
ANA, along with the MFP Coalition, urges Congress to increase
funding for the MFP to $20,200,000 in FY 2022 in order to expand access
to nurses and other mental health professionals who provide culturally
competent mental health and substance abuse services to ethnic minority
populations.
Thank you for the opportunity to provide written testimony as the
Subcommittee continues its important work. If you have any questions,
please contact Ingrida Lusis, Vice President of Policy and Government
Affairs, at [email protected].
[This statement was submitted by Debbie D. Hatmaker, PhD, RN, FAAN,
Chief Nursing Officer/EVP.]
______
Prepared Statement of the American Psychological
Association Services, Inc.
The American Psychological Association (APA) is the largest
scientific and professional organization representing psychology in the
United States, with more than 122,000 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 FY22 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 $46.111
billion for NIH in FY22, including $48.9 million for the NIH Office of
Behavioral and Social Sciences Research (OBSSR). This funding would
allow OBSSR to continue leading the coordination and support of
research designed to address the social, behavioral, and economic
effects of COVID-19 and its associated containment and mitigation
efforts. Understanding these impacts will help policymakers improve
their long-term response to the pandemic and prepare more effectively
and efficiently for the country's next public health emergency. 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.
APA recommends at least $700 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, including research
on pandemic-related learning loss. Finally, APA urges the Committee to
provide $50 million in funding shared evenly between the CDC and 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
communities 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), 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. The most recent funding cycle
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 $23 million for the Graduate Psychology
Education Program; $90 million for the Behavioral Health Workforce
Education and Training (BHWET) Grant Program; and $37 million for the
Mental and Substance Use Disorder Workforce Training Demonstration.
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 $20.2 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 $833 million for SAMHSA's Community Mental
Health Block Grant (MHBG) and $1.9 billion for the Substance Abuse
Prevention and Treatment (SAPT) Block Grant in FY22. To address rising
suicide rates, we urge the Committee to provide $240 million for the
National Suicide Prevention Lifeline; $5 million for 988
implementation, $37 million for the State/Tribal Youth Suicide
Prevention Program; $6.7 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.
Additionally, to increase the number of mental health providers working
in school settings, APA requests $606 million 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 $15.5 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.
Given that maternal mental health conditions are the most common
complication of pregnancy and childbirth, APA joins the Maternal Mental
Health Leadership Alliance and more than 100 other organizations in
requesting $5 million for HRSA's Maternal Mental Health Hotline, and
$10 million for the Screening and Treatment of Maternal Depression and
Related Behavioral Disorders Program. APA urges to Committee to provide
$750 million for Title V Maternal and Child Health Services Block Grant
Program, which supported 92% of all pregnant women in the U.S. in FY19.
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 $25 million for MHPAEA enforcement, with
10% allocated to Office of Solicitor for parity litigation. To support
MHPAEA enforcement within HHS, APA requests $10 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 $10.7 billion for the Head Start Program, $5.9
billion for Preschool Development Grants, and $500 million for CAPTA
Title I to support state child abuse prevention and treatment.
To expand the reach out various federal HIV programs, 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. APA urges the Committee to provide $120 million
for the infectious diseases and opioid program at CDC. Currently funded
at a level well below its actual need, this program increases
prevention, testing, and linkages to provide a strong ground-level
response to the intersecting crises of opioid addiction, HIV, and
hepatitis. Finally, to strengthen public health surveillance
activities, APA requests $250 million for the CDC's Data Modernization
Initiative (DMI).
[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 $10 billion for the Centers for Disease
Control and Prevention and at least $9.2 billion for the Health
Resources and Services Administration in FY 2022. 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 2022.
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% 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
$10 billion in FY 2022. We are grateful for the important increases
provided for CDC programs in FY 2021 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 approximately 11% of CDC's budget.
CDC serves as the command center for the nation's public health
defense system against emerging and reemerging infectious diseases.
From aiding in the surveillance, detection and prevention of the
current COVID-19 outbreak globally and in the U.S. to playing a lead
role in the control of Ebola in West Africa and the Democratic Republic
of the Congo, to monitoring and investigating disease outbreaks in the
U.S., to pandemic flu preparedness to combating antimicrobial
resistance, CDC is the nation's--and the world's--expert resource and
response center, coordinating communications and action and serving as
the laboratory reference center for identifying, testing and
characterizing potential agents of biological, chemical and
radiological terrorism, emerging infectious diseases and other public
health emergencies.
We strongly support the president's budget request for $400 million
in new 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 2022 to
$50 million for CDC and NIH, as requested in President Biden's FY 2022
discretionary budget proposal. This will allow CDC to conduct research
into important issues including the best ways to prevent unintended
firearm injuries and fatalities among women and children; the most
effective methods to prevent firearm-related suicides; and the measures
that can best prevent the next shooting at a school or public place.
CDC's National Center for Environmental Health works to control
asthma, protect against threats associated with natural disasters and
climate change, reduce and monitor exposure to lead and other
environmental health hazards and ensure access to safe and clean water.
We urge you to provide at least $322 million for NCEH in FY 2022,
including $110 million for CDC's Climate and Health program, as
requested in President Biden's FY 2022 discretionary 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
2021 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 FY21 and provide at least $9.2 billion for the Health
Resources and Services Administration in FY 2022
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 build upon these successes and pave
the way for new achievements by supporting critical HRSA programs,
including:
Primary Health Care that supports nearly 13,000 health center sites
in medically underserved communities across the U.S., providing access
to high-quality preventive and primary care to nearly 30 million people
including 1 in 3 people living in poverty.
Health Workforce supports the health workforce across the training
continuum and offers scholarship and loan repayment programs to ensure
a well-prepared, well-distributed and diverse workforce that is ready
to meet the current and evolving health care needs of the nation.
Maternal and Child Health supports initiatives that reduce infant
mortality, minimize disparities, prevent chronic conditions and improve
access to quality health care for vulnerable women, infants and
children; and serves 60 million people through the MCH block grant.
HIV/AIDS programs deliver a comprehensive system of care to more
than 519,000 individuals impacted by HIV/AIDS, improving health
outcomes for people with HIV and reducing the chance of others becoming
infected, and provides training for HIV/AIDS health professionals.
HRSA's Ryan White HIV/AIDS Program effectively engages clients in
comprehensive care and treatment, including increasing access to HIV
medication, which has resulted in 88.1% of clients achieving viral
suppression, compared to just 64.7% of all people living with HIV
nationwide.
Family Planning Title X services ensure access to comprehensive
family planning and preventive health services for over 3.1 million
people, reducing unintended pregnancy rates, limiting sexually
transmitted infection transmission and increasing early detection of
cancers.
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 providers who offer COVID-19 care 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 Society for Engineering Education
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) 2021 and asks you to
robustly fund student aid, teacher preparation, and STEM programs in FY
2022. Additionally, ASEE requests 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 2021 was greatly
appreciated and ASEE requests continued support of NIH.
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 programs like Pell Grants, Federal Work-Study (FWS),
TRIO, 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 preliminary
Presidential Budget Request and the American Families Plan. ASEE joins
the higher education community in requesting funding to support
doubling the maximum Pell Grant award to $12,990. 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
$1.480 billion and $1.061 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 requests funding 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. ASEE requests $35
million for GAANN.
Teacher 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 proposal to invest $9 billion in
training and diversifying the teaching workforce presented in the
American Families Plan. Efforts to support teaching skills for STEM
postsecondary faculty should also be considered and could include
partnerships between STEM disciplines and Schools of Education to
support STEM faculty and support for teaching and learning centers at
postsecondary institutions. Support of postsecondary faculty and their
promotion of STEM learning should utilize research-based methods. Our
future is dependent on today's students finding solutions to tomorrow's
problems. This can only be accomplished if those students have teachers
who are prepared to guide them in developing the knowledge and skills
needed to solve those problems.
STEM
Support for science, technology, engineering, and mathematics
(STEM) continues to grow and ASEE appreciates the support many STEM
programs received in FY 2021. 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. These and
other programs targeted towards increasing the representation of
historically underrepresented populations, including women, will ensure
a healthy STEM workforce pipeline.
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.\1\
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 technology and engineering 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 four-year institutions of higher education,
ASEE urges Congress to robustly fund the Perkins Basic State Grant
funding program in FY 2022 and encourage the program to build
connections with NSF's ATE program.
---------------------------------------------------------------------------
\1\ https://www.acteonline.org/wp-content/uploads/2021/04/
2021_ACTE_Legislative_Priorities
_April.pdf.
---------------------------------------------------------------------------
National Institutes of Health--National Institute of Biomedical Imaging
and Bioengineering (NIBIB)
NIBIB is the major NIH Institute focused on engineering
applications to human health and training the next generation of
biomedical engineers. ASEE is grateful to the committee for its strong
bipartisan support of the NIH in FY 2021. NIBIB funding is critical for
the development of devices and tools that can improve the detection,
treatment, and prevention of disease, and also plays a critical role in
assessing the effectiveness of new drugs and treatment procedures.
NIBIB also supports training programs to enhance and expand education
and training for the next generation biomedical engineering workforce.
Through grant programs like the Enhancing Science, Technology, and Math
Education Diversity Research Education Experiences, and Team-Based
Design in Biomedical Engineering Education, NIBIB is committed to
supporting all stages of the biomedical engineering career pathway and
increasing the participation of traditionally underrepresented groups
in engineering. ASEE urges the Committee to provide NIH with $46.1
billion in FY 2022 so that NIBIB can continue to support critical
biomedical engineering research and training.
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 Sheryl Sorby, 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 at
least $46.1 billion for the National Institutes of Health (NIH) and at
least $10 billion for the Centers for Disease Control and Prevention
(CDC) in fiscal year (FY) 2022. Within the CDC budget, we request $60
million for the Advanced Molecular Detection (AMD) program in the
National Center for Emerging and Zoonotic Infectious Diseases.
Achieving Remarkable Outcomes 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 Chairman Leahy, Vice Chairman
Shelby, Chair Murray and 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 six years, during which they and their
Senate 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% 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 pathogen 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
will need to be restarted, animal colonies repopulated and fieldwork
rescheduled for an indeterminate later time. While our nation's
research capacity has demonstrated it can absorb shocks, the scale of
this one is still growing and unprecedented in duration and impact.
Congress should consider additional ``research relief'' funding to NIH
to assist in the recovery of our research workforce and projects
negatively affected by the pandemic.
CDC's Indispensable Role in Preventing and Controlling Infectious
Disease
The programs and activities supported by CDC are essential to
protect the health of the American people. ASM appreciates the
extraordinary emergency funding provided to the agency in FY 2021 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 2022,
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 novel Coronavirus,
to Ebola, to the measles, to seasonal flu. CDC is the nation's expert
resource and response center, coordinating communications and action,
and serving as the laboratory reference center. 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 and state/local public health
agencies. ASM requests $60 million for AMD in FY 2022.
--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 $672
million, the National Healthcare Safety Network at $100
million, and the Division of Global Health Protection at $465.4
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, Public Policy and
Advocacy
Director, American Society for Microbiology.]
______
Prepared Statement of the American Society for Nutrition
Dear Chairman Murray and Ranking Member Blunt:
Thank you for the opportunity to provide testimony regarding Fiscal
Year (FY) 2022 appropriations. The American Society for Nutrition (ASN)
respectfully requests at least $46.1 billion dollars for the National
Institutes of Health (NIH) and $200 million dollars for the Centers for
Disease Control and Prevention/National Center for Health Statistics
(CDC/NCHS) in Fiscal Year 2022. 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 estimated for nutrition and obesity research in 2020.
Although nutrition and obesity research make up just 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. For
example, from 1990 to 2019, U.S. diet-related death rates decreased
from 154 to 101 deaths per 100,000 population, although the proportion
of deaths attributable to dietary risks was largely stable.\1\ However,
the burden and risk factors remain high. With additional support for
NIH, additional breakthroughs and discoveries to improve the health of
all Americans will be made possible.
---------------------------------------------------------------------------
\1\ https://www.ahajournals.org/doi/10.1161/CIR.0000000000000950.
---------------------------------------------------------------------------
Investment in biomedical research generates new knowledge, improved
health, and leads to innovation and long-term economic growth. ASN
recommends at least $46.1 billion dollars for NIH in Fiscal Year 2022
to support NIH nutrition-related research that will lead to important
disease prevention and cures. A budget of $46.1 billion will allow NIH
to provide support to the new 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. 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 Fiscal Year 2022 funding
level of $200 million dollars for NCHS to help ensure uninterrupted
collection of vital health and nutrition statistics and help cover the
costs needed for technology and information security maintenance and
upgrades that are necessary to replace aging survey infrastructure. The
U.S. is a leader in this area and a decade of flat funding has taken a
significant toll on NCHS's ability to keep pace.
The NCHS provides critical data on all aspects of our 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.
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 under-represented
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 2022
appropriations for the National Institutes of Health and the CDC/
National Center for Health Statistics. Please contact John E. Courtney,
Ph.D., ASN Executive Officer, at 9211 Corporate Boulevard, Suite 300,
Rockville, Maryland 20850, [email protected], if ASN may provide
further assistance.
Sincerely.
[This statement was submitted by Lindsay H. Allen, Ph.D., 2020-2021
President, American Society for Nutrition.]
______
Prepared Statement of the American Society of Hematology
The American Society of Hematology (ASH) represents more than
17,000 clinicians and scientists committed to the study and treatment
of blood and blood-related diseases, including malignant disorders such
as leukemia, lymphoma, and myeloma; conditions including thrombosis and
bleeding disorders; and congenital diseases such as sickle cell
disease, thalassemia, and hemophilia.
FY 2022 Request: National Institutes of Health (NIH)
American biomedical research has led to new medical treatments,
saved innumerable lives, reduced human suffering, and spawned entire
new industries, none of which would have been possible without support
from the 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 Society
recently updated the ASH Agenda for Hematology Research, which 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, the extraordinary research that has occurred to
identify and develop potential COVID-19 vaccines, antivirals, and other
medical countermeasures is all built on the scientific foundation
enabled by the federal investment in NIH. In response to the emergence
of hematologic complications from COVID-19 infection, ASH developed the
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.
ASH thanks Congress for the robust bipartisan support that has
resulted in several consecutive years of welcome and much needed
funding increases for NIH. For FY 2022, 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 $46.1 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.
While we are grateful for Congress's ongoing commitment to NIH as a
top national priority through the regular appropriations process, we
also urge the inclusion of emergency supplemental investments for the
NIH as Congress considers future legislation to promote the nation's
physical, health, and economic resilience to the COVID-19 pandemic.
The pandemic's impact on biomedical research has been serious and
far-reaching. Researchers in every state were forced to suspend many
laboratory activities for their own personal safety and to comply with
physical distancing guidelines. The closure of many research facilities
impacted trainees, technicians, early-stage investigators, and
established investigators alike, preventing the research workforce from
maintaining momentum toward better prevention, treatments, diagnostics,
and cures for diseases such as blood cancers, sickle cell disease, and
other hematologic diseases and conditions. While many institutions have
been implementing plans to ramp this work back up again as safely as
possible, challenges associated with the disruptions continue to
linger. For example, certain types of research--such as clinical trials
and other research projects with human participants--have been slower
to recover. Additionally, as a result of the lags, we risk undoing
progress we have made in recent years in strengthening the research
workforce, including among women, underrepresented minorities, and
early-career investigators and others at a pivotal point in their
career trajectories.
To enable NIH to mitigate the pandemic-related disruptions without
foregoing promising new science, ASH strongly supports emergency
funding for federal research agencies as outlined in the bipartisan
Research Investment to Spark the Economy (RISE) Act (H.R. 869/S. 289),
including $10 billion for NIH.
FY 2022 Request: 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 (P.L.
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 eleven states participate in the data collection
program. Funding through the CDC Foundation has allowed Georgia and
California to collect data since 2015; seven additional states
(Alabama, Indiana, Michigan, Minnesota, North Carolina, Tennessee, and
Wisconsin) were able to begin their programs in FY 2021 with the $2
million in funding provided by Congress in the FY 2021 Consolidated
Appropriations Act. In early March 2021, the program expanded to
Colorado and Virginia with additional funding from the CDC Foundation.
These eleven states are estimated to include just over 35% of the U.S.
SCD population.
ASH thanks Congress for the $2 million provided for the data
collection program in FY 2021 and for the Administration's request for
$2 million in funding for the program in FY 2022. The Society strongly
supports providing CDC with at least $5 million in FY 2022 to continue
to phase in the data collection program in the currently participating
states and to allow for an expansion to additional states with the goal
of covering the majority of the U.S. SCD population over the next five
years.
FY 2021 Request: Health Resources and Services Administration (HRSA)
Finally, ASH supports the Administration's funding requests for the
SCD programs within HRSA's Maternal and Child Health Bureau, including
$7.205 million for the SCD Treatment Demonstration Program (SCDTDP) and
$5 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 2022 appropriations bill
asking HRSA to provide Congress with a report detailing how the Sickle
Cell Disease Treatment Demonstration Program is supporting the growth
of comprehensive sickle cell disease centers.
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 2022 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 $1.25 billion increase
provided for Fiscal Year (FY) 2021 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 most needed to
defeat the COVID-19 pandemic. ASHG urges the Subcommittee to
appropriate $46.1 billion for NIH in FY 2022.
ASHG was delighted to see President Biden propose a major increase
to NIH's budget in FY 2022. We note that President Biden proposes a
significant investment for the creation of a new Advanced Research
Projects Agency for Health (ARPA-H). We look forward to learning more
about ARPA-H and how research on human genetics and genomics might play
a role in its mission.
saving lives: genetics research in the fight against covid-19
Less than a year after the first case of COVID-19 was reported, the
U.S. Food and Drug Administration (FDA) authorized the use of two
COVID-19 vaccines.\1\ This record speed in vaccine development was
built on decades of research and scientific knowledge, including NIH-
funded basic research and private investments that have led to rapid
and inexpensive DNA sequencing technologies.\2\ Our ability to quickly
and inexpensively analyze the genome of the SARS--CoV-2 virus has been
crucial for developing diagnostics and vaccines, testing, tracking
variants, and trying to understand the range of responses to infection.
NIH Director Dr. Francis Collins noted that the ability to rapidly
sequence the new coronavirus ``...made it possible within 24 hours for
the first vaccine design to get started!'' \3\
---------------------------------------------------------------------------
\1\ https://covid19.nih.gov/research-highlights/vaccine-
development.
\2\ Ibid.
\3\ https://www.forbes.com/sites/billfrist/2021/01/20/nih-director-
dr-francis-collins-connecting-the-dots-from-the-human-genome-project-
to-the-covid-19-vaccine/?sh=36f948a27543.
---------------------------------------------------------------------------
Human geneticists across the world mobilized quickly to try to
understand why some individuals were asymptomatic while others suffered
from severe disease, including so-called ``Long COVID.'' Early data
supports that genetic differences between individuals play a part in
determining susceptibility to the disease. The COVID-19 Host Genetics
Initiative and the COVID-19 Human Genetics Effort brought together
researchers from dozens of countries to share resources and data to
understand how human genetics affects COVID-19 susceptibility,
severity, and outcomes.\4,5\
---------------------------------------------------------------------------
\4\ https://www.covid19hg.org/partners/.
\5\ https://www.covidhge.com/.
---------------------------------------------------------------------------
return on investment: genetics research benefits the economy
The pandemic has demonstrated that federally funded research is
critical for us to return to normalcy and recover economically. In
addition, investments in research and development continue to be a
strong driver of economic activity overall. A new study commissioned by
ASHG and conducted by TEConomy Partners highlights the growth of a
dynamic ecosystem derived from human genetics 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.'' \6\ The report estimates that the human genetics
and genomics sector supports 850,000 jobs and generates $265 billion in
total economic activity annually,\7\ demonstrating that this sector has
grown around five-fold in the last decade. Beyond the economic impact,
the study also catalogues the many ways in which human genetics and
genomics is being integrated into routine clinical care across a broad
range of diseases.\8\ Key data from the report are shown below.
---------------------------------------------------------------------------
\6\ Tripp, S., and Grueber, M. 2021. The Economic Impact and
Functional Applications of Human Genetics and Genomics. https://
www.ashg.org/wp-content/uploads/2021/05/ASHG-TEConomy-Impact-Report-
Final.pdf.
\7\ Ibid.
\8\ Ibid.
---------------------------------------------------------------------------
genetics & genomics: striving for equity
The COVID-19 pandemic has disproportionately affected racial and
ethnic minorities in the U.S., reinforcing that there are social
factors in this country that cause major health disparities.\9\ It is
imperative that the application of genetic science in healthcare does
not worsen existing health disparities, but instead advances health to
benefit all Americans. Indeed, NIH-funded research has demonstrated how
genetics and genomics research can be a tool for health equity through
deliberate inclusion and participation of individuals from diverse
groups. As genetics research is foundational to our understanding of
human biology, gleaning the full scope of genetic variation will
improve both healthcare and health equity. Inclusion of populations
from diverse ancestries in studies is revealing novel insights about
drug responses, diagnostic accuracy, and disease risk, demonstrating
the need for increased diversity in research studies and clinical
trials.\10\ In ensuring broad cohort diversity in biomedical research,
we need to consider all types of diversity, including engagement with
both urban and rural communities, and taking into account social
demographics such as gender, age, and economic status.
---------------------------------------------------------------------------
\9\ https://www.cdc.gov/coronavirus/2019-ncov/community/health-
equity/racial-ethnic-disparities/index.html.
\10\ 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 2021. 384:1-4.
---------------------------------------------------------------------------
The Society commends NIH's efforts to advance diversity and equity
in research, which are made possible by the strong support of this
Subcommittee in providing robust funding for the NIH. The great strides
made by the All of Us Research Program in having its research cohort
reflect the diversity of the United States is one such example.\11\
Furthermore, UNITE, NIH's new initiative to address ``racial equity in
the biomedical research workforce'' and ``long-standing health
disparities and issues related to minority health inequities in the
United States'' \12\ comes at a crucial time for our nation.
---------------------------------------------------------------------------
\11\ https://allofus.nih.gov/.
\12\ https://www.nih.gov/ending-structural-racism/unite.
---------------------------------------------------------------------------
America's greatest asset is its people--all of its people. From the
research workforce to research participants, increasing diversity is
essential if we are to realize the full promise of genomics research
and the equitable application of genetic discoveries in healthcare and
society. Sustained budget increases for NIH are necessary to fund
programs that emphasize diversity and equity in the workforce and that
broaden participation by the public in research.
nih funding for the future
The COVID-19 pandemic caused unprecedented disruptions to the
biomedical research enterprise in 2021. This was especially true in the
human genetics and genomics community, where researchers either closed
laboratories or repurposed their genome sequencing machines for
performing SARS-CoV-2 testing, tracking and tracing. Strong funding is
needed in FY2022 to help the workforce recover.
ASHG joins its fellow members of the Federation of American
Societies for Experimental Biology (FASEB) and the Ad Hoc Group for
Medical Research in recommending a $46.1 billion base budget for NIH
for FY 2022. 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.
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 Gail Jarvik, MD, PhD, President,
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)
2022 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.
The COVID-19 pandemic is especially deadly for kidney patients.
Americans with kidney diseases are among the most at risk among
Medicare beneficiaries for severe outcomes from COVID-19--including
hospitalization and death,i,ii,iii,iv and COVID-19 damages the kidneys
of as many as 40-50% of all hospitalized COVID-19 patients, even those
without a prior history of kidney diseases.v,vi
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 $130 billion, or 25 percent of all
traditional Medicare fee-for-service spending, to the care of all
kidney diseases, including $50 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 more than 50
innovators across 4 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. In 2020, KidneyX
awarded the COVID-19 Kidney Care Challenge to identify solutions that
will reduce the risk of COVID-19 to kidney patients and launched the
Artificial Kidney Prize to accelerate the development of an artificial
kidney. Winners of Phase 1 of the Artificial Kidney Prize will be
announced in September 2021. FY 22 funding will support continued
development of an artificial kidney through Phase 2 and 3 of the
Artificial Kidney Prize and other innovations to catalyze further
private investment in meeting the long unmet needs of this underserved
population.
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 maintaining kidney health 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
--New technologies as innovative treatment options, such as an
implantable silicon filter cartridge that mitigates the need
for dialysis needles or a method to grow human kidney cells on
animal kidney scaffolds that could increase the number of
transplantable organs, both seeded through the Redesign
Dialysis Phase 1 and Redesign Dialysis Phase 2 prize
competitions
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 total
$250 million in the first 5 years. KidneyX has received $10 million
since FY 20 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 2022 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% of
Medicare spending (approximately $50 billion) in CY 2018, yet
therapeutics for kidney failure remain limited and 50% 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 2022 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 of the
American Society of Nephrology, at (202) 618-6991 or zkribs@asn-
online.org.
about the american society of nephrology
The American Society of Nephrology is a 501(c)(3) non-profit, tax-
exempt organization that leads the fight against kidney disease by
educating the society's more than 21,000 nephrologists, scientists, and
other healthcare professionals, advancing research and innovation,
communicating new knowledge, and advocating for the highest quality
care for patients. For more information, visit www.asn-online.org.
---------------------------------------------------------------------------
\1\ https://www.cms.gov/newsroom/press-releases/cms-proposes-
medicare-payment-changes-support-innovation-and-increased-access-
dialysis-home-setting.
\2\ https://www.cms.gov/files/document/medicare-covid-19-data-
snapshot-fact-sheet.pdf.
\3\ Cheng Y, Luo R, Wang K, et al. Kidney disease is associated
with in-hospital death of patients with COVID-19. Kidney Int.
2020;97(5):829-838. doi:10.1016/j.kint.2020.03.005.
\4\ Ng JH, Hirsch JS, Wanchoo R, et al. Outcomes of patients with
end-stage kidney disease hospitalized with COVID-19. Kidney Int.
2020;98(6):1530-1539. doi:10.1016/j.kint.2020.07.030.
---------------------------------------------------------------------------
v Birkelo, B C. et al. Comparison of COVID-19 versus influenza on
the incidence, features, and recovery from acute kidney injury in
hospitalized United States Veterans. Kidney Int. 2020;0(0). doi.org/
10.1016/j.kint.2021.05.029
vi Chan L, et al. AKI in Hospitalized Patients with COVID-19. JASN.
2021;32(1):151-160. doi: 10.1681/ASN.2020050615
[This statement was submitted by Zachary 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) 2022 and
asks that the Subcommittee encourage increased support for plant-
related research with relevance to health within the agency.
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, nutriceuticals, 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. Plants are
potential resources to produce vaccines against infectious diseases
such as Ebola, hepatitis B, cholera, and coronavirus. At least one
plant-derived COVID-19 vaccine candidate, developed by GlaxoSmithKline
and Medicago, is already in phase III clinical trials and could be a
valuable asset in ending the COVID-19 pandemic.\1\ 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.\2\ 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.
---------------------------------------------------------------------------
\1\ https://www.medicago.com/en/media-room/medicago-and-gsk-start-
phase-3-trial-of-adjuvanted
-covid-19-vaccine-candidate/.
\2\ Page 19, Decadal Vision, https://
plantsummit.files.wordpress.com/2013/07/plantsciencedeca
dalvision10-18-13.pdf.
---------------------------------------------------------------------------
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'' as they provide complexity of multi-
cellular organisms including humans while affording ease of genetic
manipulation, a lesser regulatory burden, and maintenance requirements
that are less expensive than those required for the use of animal
systems.
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 immunity 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% or more of the human genome. More recently, plants are
among organisms that have been used to develop revolutionary
technologies such as gene editing (CRISPR), capable of precisely
editing genomes to potentially correct mutations that lead to disease.
These technologies will benefit plant biology and agriculture to
produce healthy food and feed the world. 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.
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% 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; \3\ 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% 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.
---------------------------------------------------------------------------
\3\ https://www.who.int/bulletin/archives/78(10)1207.pdf.
---------------------------------------------------------------------------
Obesity, cardiac disease, and cancer also take a striking toll
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% 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 pharmaceuticals. We appreciate NIH's current investment
into understanding the biosynthesis of natural products through
transcriptomics and metabolomics of medicinal plants and support more
funding opportunities similar to the ``Genomes to Natural Products''
which will enhance new plant-related medicinal research.
conclusion
Plants play unique and pivotal roles in nutrient and health,
agriculture, and 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 NIH and direct the
agency to support additional plant research in order to continue to
pioneer new discoveries and new methods with applicability and
relevance in biomedical research. Thank you for your consideration of
ASPB's testimony. For more information about ASPB, please see
www.aspb.org.
[This statement was submitted by Crispin Taylor, Ph.D., Chief
Executive Officer, American Society of Plant Biologists.]
______
Prepared Statement of the American Speech-Language-Hearing Association
Chairwoman 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) 2022 Labor-HHS-Education
funding bill. My name is A. Lynn Williams, PhD, CCC-SLP, ASHA's
President for 2021. As the Subcommittee begins its work on this
critical legislation, I offer support for the following funding
requests:
--$15.5 billion for Individuals with Disabilities Education Act
(IDEA) Part B State Grants, $598 million for IDEA's Part B
Section 619 Preschool Grants, and $732 million for IDEA Part C
Infants and Toddlers with Disabilities within the Department of
Education.
--$11,851,488 for the Centers for Disease Control and Prevention
(CDC) and $19,522,758 for the Health Resources and Services
Administration (HRSA) for the Early Hearing Detection and
Intervention programs within the Department of Health and Human
Services. In addition, ASHA urges the Subcommittee to include
report language to address hearing health care disparities in
medically underserved communities.
--$15.5 million increase in funding for the National Institute on
Deafness and Other Communications Disorders (NIDCD) at the
National Institutes of Health (NIH), while ensuring that NIDCD
receives an equitable funding share from any increases to NIH
funding in FY 2022.
--$122,970,000 for the National Institute on Disability, Independent
Living, and Rehabilitation Research (NIDILRR) at the
Administration for Community Living (ACL) within the Department
of Health and Human 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% 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 the Administration's budget request for
IDEA, which would provide substantial increases for IDEA Part B State
Grants, Section 619 Preschool Grants, and Part C Infants and Toddlers
early intervention services, and that is a significant investment
toward fully funding this program.
---------------------------------------------------------------------------
\1\ U.S. Department of Education. (n.d.). About IDEA. https://
sites.ed.gov/idea/about-idea/.
---------------------------------------------------------------------------
These resources are essential to support states and local education
agencies in providing FAPE to all students with disabilities. However,
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 the services and supports for children with
disabilities. ASHA supports robust funding for IDEA as identified to
ensure students with disabilities can continue to access the services
to which they are entitled.
early hearing detection and intervention program
The Early Hearing Detection and Intervention (EHDI) Act is one of
the nation's most important public health programs, offering early
hearing screening and intervention to all newborns, infants, and young
children in every state and territory. EHDI provides state grants to
develop and support infant hearing screening and intervention programs
through HRSA and requires the CDC to provide surveillance of
screenings, referral to treatment and diagnosis, technical assistance,
and applied research. When the Children's Health Act of 2000 was
passed-which established the state-based universal newborn hearing
screening programs-only 46.5% of newborns were screened.\2\ However,
today approximately 98% of newborns receive an audiologic screening
totaling 4 million infants and children in 2016 alone.\3\ Funding for
hearing screenings and early intervention services has proven to be a
wise investment for the United States' economy and saves the country
approximately $200 million in education costs each year.\4\
---------------------------------------------------------------------------
\2\ Centers for Disease Control and Prevention (CDC). (2010).
Summary of infants screened for hearing loss, diagnosed and enrolled in
early intervention, United States, 1999-2008. Atlanta, GA: U.S.
Department of Health & Human Services, CDC; 2010. https://www.cdc.gov/
ncbddd/hearingloss/2008-data/ehdi_1999_2008.pdf.
\3\ Centers for Disease Control and Prevention (CDC). (2018).
Summary of 2016 National CDC EHDI Data. https://www.cdc.gov/ncbddd/
hearingloss/2016-data/01-2016-HSFS-Data-Summary-h.pdf.
\4\ Gross, S.D. (2007). Education cost savings from early detection
of hearing loss: New findings. Volta Voices, 14(6),38-40.
---------------------------------------------------------------------------
Fully funding EHDI at its authorized level is critical to ensure
all newborns are screened for hearing loss and receive follow-up
services. Hearing loss is a serious health condition that impacts more
than 34 million Americans, and two to three out of every 1,000 children
in the United States are born with a detectable level of hearing loss
in one or both ears.\5\ Underfunding EHDI may leave thousands of
children with undiagnosed hearing loss and deprive children who are
deaf or hard of hearing from receiving follow-up services that improve
language skills and development as many health care appointments and
treatments have been delayed or canceled due to the COVID-19 pandemic.
When hearing loss is detected late, the critical time for stimulating
the auditory pathways to hearing centers of the brain is lost. Late
hearing loss detection also delays speech and language development
affecting social and emotional growth, academic achievement, and
employment options.
---------------------------------------------------------------------------
\5\ National Institute on Deafness and Other Communication
Disorders (NIDCD). (2017). Researchers help uncover a root cause of
childhood deafness in the inner ear using animal model. https://
www.nidcd.nih.gov/news/2017/childhood-deafness-research.
---------------------------------------------------------------------------
Children with hearing loss also face significant barriers in
accessing hearing health care services. Variables including
socioeconomic factors, geographic location, medical infrastructure, and
access to social support contribute to delays in diagnosis and
treatment of hearing loss. These disparities particularly impact
members of racial and ethnic minority communities. According to a 2017
study, African American infants are 92% more likely to experience loss
to follow-up than infants from other ethnic groups.\6\ Rural Hispanic
children whose caregivers have low English fluency encounter greater
difficulty accessing these health care services.\7\ According to CDC
data, American Indian and Alaskan Native children enroll in early
intervention services at a rate 26.4% less than their White
counterparts.\8\ The CDC must expand its work to improve surveillance,
ensure access to timely identification of congenital and acquired
hearing loss, and enhance the connection to follow-up services,
particularly among racial and ethnic minority populations. ASHA
supports fully funding EHDI at its authorized level and encourages the
Subcommittee to include the following language in the report on its FY
2022 bill:
---------------------------------------------------------------------------
\6\ Bush, M. L., Kaufman, M. R., & McNulty, B. N. (2017).
Disparities in access to pediatric hearing health care. Current opinion
in otolaryngology & head and neck surgery, 25(5), 359-364. https://
doi.org/10.1097/MOO.0000000000000388.
\7\ Ibid.
\8\ Centers for Disease Control and Prevention (CDC). (2020).
Hearing Loss in Children. https://www.cdc.gov/ncbddd/hearingloss/2018-
data/15-screening-demographics.html.
---------------------------------------------------------------------------
The Committee recognizes the importance of access to pediatric
hearing health care. The Committee is aware of the significant racial
and ethnic disparities in care facing children with hearing loss, and
the effect unaddressed congenital hearing loss has on communication
skills, psychosocial development, educational progress, and language
development. The Committee encourages the CDC to expand their work to
improve surveillance of state and territorial-based EHDI systems to
ensure access to timely identification of congenital and acquired
hearing loss and develop materials to enhance connection to follow up
services among racial and ethnic minorities, and other medically
underserved populations.
National Institute on Deafness and Other Communication Disorders, and
the National Institute on Disabilities, Independent Living and
Rehabilitation Research
ASHA applauds the Subcommittee's continued efforts to increase
funding for health care research. ASHA strongly supports continued
increases in funding for the National Institute on Deafness and Other
Communications Disorders (NIDCD) at the National Institutes of Health
(NIH), and the National Institute on Disabilities, Independent Living
and Rehabilitation Research (NIDILRR) at the Administration for
Community Living (ACL). NIDCD investments are needed to ensure
groundbreaking research on communication sciences as rehabilitation
continues to evolve and expand. Approximately 46 million Americans have
a communication disorder.\9\ These disorders impact the economy through
costs related to lost productivity, special education services,
rehabilitation needs, health care expenditures, and lost revenue.
Increases in NIDILRR's funding would allow the Institute to support the
wide range of applied research and expand into new areas of emerging
science to support individuals with disabilities. ASHA urges the
Subcommittee to provide necessary funding for NIDCD and NIDILRR to
ensure this research continues and evolves to address the needs of
individuals with communication disorders.
---------------------------------------------------------------------------
\9\ National Institute on Deafness and Other Communication
Disorders (NIDCD). (2019). Mission. https://www.nidcd.nih.gov/about/
mission.
---------------------------------------------------------------------------
conclusion
Thank you for the opportunity to provide this testimony for the
record. ASHA appreciates the Subcommittee's past investments in these
important health and education programs and urges continued support at
the recommended funding levels. These investments are crucial to
ensuring audiologists and speech-language pathologists can meet the
hearing, balance, speech, language, swallowing, and cognition-related
needs of their patients, clients, and especially students who are
receiving special education services in schools.
If you or your staff have any questions, please contact ASHA's
associate director of federal affairs: Erik Lazdins, [email protected],
444 North Capitol St NE,
Washington, DC 20001.
______
Prepared Statement of the American Thoracic Society
summary of fiscal year 2022 appropriations recommendations
_______________________________________________________________________
--ATS urges Congress to provide at least $46.1 billion for the
National Institutes of Health (NIH) for Fiscal Year (FY) 2022,
an increase of $3.2 billion over FY2021.
--$3.94 billion for the National Heart, Lung, and Blood Institute
(NHLBI) at NIH.
--$6.52 billion for the National Institute of Allergy & Infectious
Diseases at NIH.
--$419.9 million for the National Institute on Minority Health and
Health Disparities at NIH.
--$187.9 million for the National Institute of Nursing Research at
NIH.
--$875 million for the National Institute of Environmental Health
Sciences (NIEHS).
--ATS urges Congress to provide $10 billion in funding for the
Centers for Disease Control and Prevention (CDC) for FY 2022.
After decades of under-investment, the COVID-19 pandemic has
revealed that we must strengthen our national, state and local
public health systems and reinvest in the CDC.
--$5 million in funding for the Chronic Disease Education and
Awareness Program
--$225 million in FY 2022 for the CDC's domestic Division of TB
Elimination program and $21 million for the Global TB
program
--$35 million in funding for the National Asthma Control Program at
CDC
--ATS requests $50 million in FY2022 for CDC's Climate and Health
Program
--ATS requests $262.5 million in FY2022 for the Office on Smoking
and Health
--$354.8 million in funding for the National Institute of
Occupational Safety and Health
_______________________________________________________________________
about the american thoracic society
The ATS is a multi-disciplinary society of 16,000 physicians,
scientists, respiratory therapists and nurses dedicated to the
prevention, detection, treatment and cure of pulmonary disease,
critical illness and sleep disordered breathing. Our members treat a
wide range of lung disorders and have been on the frontlines of the
COVID-19 pandemic treating individuals and conducting vital scientific
research to develop diagnostics, treatments, and prevention
interventions for COVID, even as we continue our efforts on other
pulmonary, critical illness and sleep disorders.
ATS urges Congress to provide at least $46.1 billion for NIH for FY
2022
ATS thanks Congress for providing funding for NIH's COVID-19-
related research which helped develop life-saving vaccines and other
important advances. But the evolving pandemic requires the continued
mobilization of research resources to improve our understanding of the
SARS-CoV2 virus and develop new diagnostics, therapeutics, and updated
vaccines to combat new virus variants. African Americans, Native
Americans and other racial and ethnic minorities continue to become
infected and die from COVID-19 at high rates--we must accelerate
efforts to address these disparities and develop prevention and
therapeutic interventions for these and other high-risk populations. In
addition, thousands of Americans who recovered from COVID-19 are now
suffering chronic long-term complications. Studies into the causes,
treatment, and prevention of long-term complications, such as pulmonary
fibrosis, are urgently needed.
Respiratory disease in America is on the rise. Even before the
COVID pandemic, lung disease was the fourth leading cause of death in
the US, driven primarily by chronic obstructive lung disease (COPD).
Despite the rising lung disease burden, lung disease research is
underfunded. Although COPD is the fourth leading cause of death in the
U.S., research funding for the disease is a small fraction of what is
invested for the other leading causes of death, such as heart disease,
cancer, and stroke, as outlined below. Funding for implementation of
the COPD National Action Plan would address this disparity.
ATS urges Congress to provide $3.94 billion for NHLBI
Since 1948, the NHLBI has made important progress in the treatment
and prevention of cardiovascular disease, respiratory diseases, and
blood and sleep disorders. Even with this progress, challenges remain
as these conditions continue to account for more than 1 million
American deaths each year and cost our nation an estimated $479 billion
in medical expenses and lost productivity.
To continue important advances in research, the NHLBI is investing
in prevention programs and developing novel therapies for lung diseases
such as chronic obstructive pulmonary disease (COPD), asthma, cystic
and pulmonary fibrosis and driving precision medicine that is tailored
to individual patient needs through data science.
ATS urges Congress to provide $875 million for NIEHS
NIEHS 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 and autoimmune diseases. Researchers funded by
NIEHS have highly relevant expertise that will aid our response to
COVID-19 and future pandemics through study of mechanisms to protect
health care workers facing occupational exposure to SARS-CoV-2 and
COVID-19, and how environmental exposures such as air pollution impact
individual susceptibility to infection and development and severity of
COVID-19 disease.
ATS urges Congress to provide $10 billion for CDC for FY 2022
In order to halt the COVID-19 pandemic and ensure our preparedness
for future infectious disease outbreaks, it is critical that the CDC
receives sustained annual funding increases. In FY2022, increased CDC
funding is needed to ensure resources for COVID-19 vaccine
distribution, administration and public education, testing, contact
tracing, disease surveillance and targeted community assistance,
including to communities that have been disproportionately impacted by
COVID-19 and remain at high-risk, such as minority populations. More
than 70 percent of CDC's budget goes directly to state public and local
health organizations and academic institutions for programs that
protect public health. CDC programs in chronic disease prevention,
tuberculosis control, asthma, tobacco control and occupational safety
and health are essential to protecting the health of millions of
Americans.
ATS urges Congress to provide $225 million for the Division of TB
Elimination and $21 million for CDC's Global TB program through
the Center for Global Health.
Prior to the COVID-19 pandemic, TB was the leading global
infectious disease killer, killing 1.4 million annually. Every state in
the U.S. reports cases of TB each year. Further, in its 2019 report on
antibiotic resistance, the CDC identified drug resistant TB as a
serious health threat to the nation. CDC estimates that up to 13
million Americans have latent TB infection. These cases, which can be
preventively treated, are the reservoir of future active TB cases.
CDC's domestic TB program has been flat funded since FY2014, leaving
states ill-equipped to manage drug resistant TB and unable to do LTBI
testing and preventive treatment. In addition, we urge NIH to expand
research to develop new tools to address TB.
ATS urges Congress to provide $35 million in funding for the National
Asthma Control Program
An estimated 25 million people in the U.S. have asthma, including 6
million children. Asthma is the most common cause of missed school
days--about 14 million per year. As recently as 2016, 3,274 Americans
died of asthma. About 63% of these deaths were among women.
CDC's asthma program includes the following core functions, 1)
provides state grants for asthma control activities including asthma
tracking and public health interventions, 2) Improves asthma education
and management through coordinated school health programs, and 3)
Conducts public health research to help target and inform asthma
control efforts.
ATS urges Congress to provide $5 million in funding for the Chronic
Disease Education and Awareness Program
In response to advocacy by ATS and disease advocates, in FY2021
Congress created CDC's new Chronic Disease Education and Awareness
program to address chronic diseases such as COPD and sleep disorders.
The program will fund competitive grants focused on public health
initiatives to increase awareness and educate communities on how to
prevent chronic diseases. Program grants can be used to support
national and local implementation of the COPD National Action Plan, by
raising awareness and improving access to COPD care and management and
prevention. The program is funded at $1.5 million in FY2021, and
additional resources are needed to support new cooperative agreements
in meritorious areas. We also urge CDC to include COPD-based questions
to future CDC health surveys, including the National Health and
Nutrition Evaluation Survey (NHANES), the Behavioral Risk Factor
Surveillance System (BRFSS) and the National Health Information Survey
(NHIS).
sleep
Research studies demonstrate that sleep-disordered breathing and
sleep-related illnesses affect an estimated 50-70 million Americans.
The public health impact of sleep illnesses and sleep disordered
breathing is known to include increased mortality, traffic accidents,
cardiovascular disease, and other comorbidities. The ATS recommends a
funding level of $1 million in FY2022 to support activities related to
sleep and sleep disorders at the CDC. The ATS also recommends an
increase in funding for research on sleep disorders at the NHLBI's
Nation Center for Sleep Disordered Research (NCSDR). Thank you for your
consideration of these requests.
[This statement was submitted by Lynn Schnapp, MD, ATSF, President,
American Thoracic Society.]
______
Prepared Statement of the American Urogynecologic Society
The American Urogynecologic Society (AUGS) thanks the Subcommittee
for the opportunity to submit comments for the record regarding our
Fiscal Year 2022 report language recommendations for prioritizing
research on Overactive Bladder and medications commonly prescribed to
treat this condition at the NIH National Institute on Aging and the
National Institute of Diabetes, Digestive and Kidney Diseases. 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.
Overactive Bladder is a sudden, intense urgency to urinate often
followed by an involuntary loss of urine. It can cause the need to
urinate frequently, and often throughout the night, because of altered
bladder nerve signaling. 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% higher health care utilization than matched counterparts
without this condition. The Centers for Disease Control and Prevention
estimated in the U.S., the direct and indirect costs of Overactive
Bladder would be approximately $76 billion in 2015 and projected these
costs would account for $82.6 billion of U.S. healthcare costs by 2020.
Anticholinergic medications are commonly prescribed to treat
Overactive Bladder. These therapies are the most studied, most
frequently used, and most often covered by insurance companies as a
treatment for Overactive Bladder. 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 dementias (ADRD) in some
patients with Overactive Bladder. 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 Alzheimer's disease and related dementias
(ADRD) development and to determine if the risks substantially outweigh
the benefits of these therapies.
For these reasons, the American Urogynecologic Society urges the
Subcommittee to adopt the following report language in the report
accompanying the Fiscal Year 2022 Labor-HHS-Education appropriations
bill that directs the National Institutes of Health National Institute
on Aging (NIA) and the National Institute of Diabetes, Digestive and
Kidney Diseases (NIDDK) to study the association between current
medications for Overactive Bladder and Alzheimer's disease and related
dementias (ADRD) in certain patient populations, in order to advance
research resulting in safe and effective treatment initiatives for all
patients with Overactive Bladder.
national institutes of health
National Institute on Aging and National Institute of Diabetes,
Digestive and Kidney Diseases
Overactive Bladder.--The Committee is concerned that
anticholinergic medications commonly prescribed to treat Overactive
Bladder, a condition that affects one in three older Americans, have
been shown in recent studies to increase the risk of developing
Alzheimer's disease and related dementias (ADRD). The Committee
believes that further research of anticholinergic medications as well
as on alternatives to these treatments is urgently needed to establish
certainty regarding the safety of these medications as a treatment
option for Overactive Bladder in older adults. The Committee urges that
the National Institute on Aging (NIA) and the National Institute of
Diabetes, Digestive, and Kidney Diseases (NIDDK) prioritize research
grants and contracts that study the long-term use of anticholinergic
medications and the risk of cognitive impairment and ADRD. The
Committee requests an update on this issue and on research activities
to advance safe and effective alternative treatments for Overactive
Bladder in the fiscal year 2023 Congressional Budget Justification.
Thank you in advance for your favorable consideration of this
report language request and for your support for prioritizing research
to ensure there are safe and effective treatments for the millions of
Americans in this country that suffer from Overactive Bladder.
______
Prepared Statement of the Anti-Defamation League
On behalf of the Anti-Defamation League (ADL), I write to urge
Members of the Subcommittee to adopt legislative and report language
that condemns proposals that would effectively curtail anti-bias
programming in public schools. During 2021 sessions, a number of state
legislatures have considered and adopted proposals that purport to
block the teaching of material that is vaguely characterized as
``divisive concepts,'' or as assigning blame or responsibility or
creating guilt based on race, ethnicity, or sex. We are deeply
concerned that these policies would drastically curb the use and
further development of an essential tool in the effort to eliminate
hate incidents: lessons and programs that teach young people about the
history and institutionalization of hateful ideologies, awareness of
biases, and importance of each person vocally opposing expressions of
prejudice.
Founded in 1913 in response to an escalating climate of anti-
Semitism and bigotry, ADL is a leading anti-hate organization with the
mission of protecting the Jewish people and securing justice and fair
treatment for all. Today, we continue to fight all forms of hate with
the same vigor and passion. A global leader in exposing extremism,
delivering anti-bias education, and fighting hate online, ADL's
ultimate goal is a world in which no group or individual suffers from
bias, discrimination, or hate. To that end, ADL is an advocate for
Holocaust education. We strongly believe that learning about the
Holocaust, and the unchecked anti-Semitism and racism that set the
stage for and sustained it, is one of the best ways to fight prejudice
and discrimination, and to help ensure that genocide and other
atrocities never happen again.
ADL has actively opposed anti-"divisive concepts'' bills and
policies including Texas HB 3979, Arizona SB 1532, Louisiana HB 564,
and New Hampshire HB 544; similar proposals that have advanced or been
enacted in 2021 also include Iowa HF 802, which applies not only to K-
12 schools but also to government agencies and public universities and
was enacted by the legislature in early May 2021; West Virginia HB
2595, which proposes to end state funding for any agencies that promote
``divisive'' concepts or acts; and Oklahoma SB 803, which authorizes
dismissal of teachers for instructing students in disapproved-of ideas
and beliefs about, for example, the fundamentally racist and sexist
nature of American society.
Although these bills vary in their details, their common features
include vagueness, subjectivity, and the singling out of particular
ideas for a prohibition on speech, which constitutes unconstitutional
viewpoint discrimination. In fact, a federal judge has already
determined that plaintiffs were likely to succeed in a First Amendment-
based challenge to a similar federal prohibition adopted by a
subsequently-revoked Executive Order. ADL is acutely dismayed that
these proposals will have, and already have had, the effect of
prompting cautious administrators to cancel or postpone critically
important efforts to expand students' knowledge, experience, and
sensitivity to systemic biases. The Iowa Department of Education, for
example, postponed a conference on social justice and equity in
education originally planned for April 2021, noting publicly that, ``We
are mindful of pending legislation that may impact the delivery and
content of certain topics related to diversity, equity and inclusion.''
Another common feature of recent legislation billed as taking aim
at the spread of ``divisive concepts'' is language that prohibits
teaching that makes an individual ``feel discomfort, guilt, anguish or
any other form of psychological distress because of the individual's
race, ethnicity or sex.'' We are particularly alarmed that this measure
would effectively create a ``heckler's veto'' of critical education in
our public schools. Legitimate Holocaust curricula or educational
programs must necessarily condemn the antisemitic and racist ideology
of the Nazis, as well as Holocaust denial. As a leading authority on
extremism, terrorism, and hate, both foreign and domestic, we also note
that today's white supremacists and neo-Nazis are virulently
antisemitic, racist, xenophobic, misogynistic, homophobic, and do not
consider light-skinned Jews to be ``white people.'' We foresee that
under the rules set forth in these bills, any student or employee who
is white and holds these odious beliefs, whether or not affiliated with
an extremist group, could claim that a Holocaust education program
impermissibly makes them feel discomfort, guilt, anguish, or other
psychological distress because of their white race. The same could be
true for someone holding these beliefs who claims that discussion of
the Holocaust and historical antisemitism constitutes discrimination
based on their German ethnicity or national origin. This concern is not
hypothetical. Only two years ago there was a disturbing issue at a
South Florida public high school involving parents who did not believe
the Holocaust occurred, who succeeded in impacting the school's
delivery of state-mandated Holocaust education.
At a time of rising hate crimes and anti-Semitic incidents, the
need to teach young people who are still forming their beliefs and
principles the universal lessons of the Holocaust, and the devastating
consequences of all forms of bigotry and hate, is acute and urgent.
Anti-bias education and the imparting of honest information about the
historical and social reasons for persistent disparities among people
of different races, ethnicities, religions, genders, sexual
orientations, and abilities are essential elements to the
deconstruction of stratified, discriminatory systems: we simply cannot
create a more just future without examining and confronting our unjust
past and its modern-day footprints. Curricula that identify the
hallmarks of bigotry and bring unconscious prejudices to light not only
bend the moral arc of the universe toward justice, but also teach youth
valuable leadership and problem-solving skills, and ensure that
classroom environments are conducive to every student's progress.
Positive communities that proactively welcome and celebrate inclusion
foster academic and life success.
ADL urges Members of the Subcommittee to protect students' access
to essential education about discrimination, biases, and the
consequences of government and institutional embrace of prejudice by
adopting legislative language that withdraws and withholds federal
funding for public educational agencies and institutions that implement
prohibitions on the teaching of so-called ``divisive concepts,'' to
include histories and present-day indicators of endemic hate and
discrimination against groups of people based on race, ethnicity,
national origin, religion, gender, gender identity, sexual orientation,
and disability. In addition, we urge Members to adopt report language
that notes the need for and benefits of anti-bias education in schools
and that condemns attempts to limit or prohibit anti-bias programming
in schools and other government institutions.
Thank you for your consideration.
[This statement was submitted by Erin Hustings, Director of Govt.
Relations, Civil Rights Anti-Defamation League.]
______
Prepared Statement of the Association for Career and Technical
Education and Advance CTE
Chairwoman Murray, Ranking Member Blunt, and distinguished members
of the subcommittee, on behalf of the Association for Career and
Technical Education (ACTE), the nation's largest not-for-profit
association committed to the advancement of education that prepares
youth and adults for career success, and Advance CTE, the nation's
longest-standing not-for-profit that represents State Directors and
leaders responsible for secondary, postsecondary and adult Career
Technical Education (CTE) across all 50 states and U.S. territories, we
respectfully request that the subcommittee increase funding for the
Carl D. Perkins Career and Technical Education Act (Perkins V) Basic
State Grant program, administered by U.S. Department of Education's
Office of Career, Technical, and Adult Education, to $2.5 billion in
the Fiscal Year (FY) 2022 Labor, Health and Human Services, Education,
and Related Agencies appropriations bill. It is vital that Congress
continues to build upon the recent increases to Perkins V in order to
fully support the implementation of the law and the over 11 million
learners it serves across the nation.\1\
---------------------------------------------------------------------------
\1\ Perkins Collaborative Resource Network, State Profiles.
Retrieved from https://cte.ed.gov/profiles/national-summary.
---------------------------------------------------------------------------
In the Administration's recent budget proposal, the FY 2022
discretionary request proposes only a disappointing 1.5%, or $20
million, increase for the Perkins V Basic State Grant. This is
inadequate given the growing need for skilled workers facing employers
and learner demand for CTE. The additional $1 billion annually for
middle and high school career pathways included in the President's
budget request but through the American Jobs Plan would actually have a
greater impact if this increase was authorized and appropriated through
the Basic State Grant, and thus is included in our request.
CTE at the secondary and postsecondary levels is an integral part
of achieving an equitable and efficient economic recovery. COVID-19
(the coronavirus) has affected the most foundational aspects of our
society. With millions of Americans unemployed, or underemployed, and
some industry sectors shuttered or undergoing rapid transformation,
Black and Latinx workers, workers with a high school education or less
and female workers have been disproportionately impacted. Now, more
than ever, CTE is vital to our nation's learners, employers and
economic recovery. Consider:
--The unemployment rate reached 14.8 percent in April 2020, the
highest unemployment rate since data collection started in
1948. As of May 2021 unemployment remained higher than it had
been in February 2020, before the pandemic came to the
forefront (5.8 percent compared to 3.5 percent).\2\
---------------------------------------------------------------------------
\2\ Congressional Research Service, Unemployment Rates During the
COVID-19 Pandemic, June 2021. Retrieved from https://fas.org/sgp/crs/
misc/R46554.pdf.
---------------------------------------------------------------------------
--The unemployment rate for teenagers aged 16-19 hit 31.9 percent in
April 2020, the highest it has even been in over 70 years. The
only other time the unemployment rate for this population
reached over 25 percent was during the Great Recession.\3\
---------------------------------------------------------------------------
\3\ U.S. Department of Labor, Bureau of Labor Statistics. Retrieved
from https://www.bls.gov/opub/ted/2020/unemployment-rate-rises-to-
record-high-14-point-7-percent-in-april-2020.htm.
---------------------------------------------------------------------------
--As of May 2021, 7.9 million workers reported that they were not
able to find a job because their original employer either
closed or was not hiring because of the pandemic.\4\
---------------------------------------------------------------------------
\4\ U.S. Department of Labor, Bureau of Labor Statistics, The
Employment Situation--May 2021, June 2021. Retrieved from https://
www.bls.gov/news.release/pdf/empsit.pdf.
---------------------------------------------------------------------------
--The unemployment rates are also much worse for non-White young
adults--35.5 percent and 31.1 percent for Black and Latino
teenagers respectively, compared to 29 percent for White
teenagers.\5\
---------------------------------------------------------------------------
\5\ U.S Department of Labor, Bureau of Labor Statistics, Labor
Force Statistics from the Current Population Survey. Retrieved from
https://www.bls.gov/web/empsit/cpsee_e16.htm, based on quarterly
averages.
---------------------------------------------------------------------------
For those individuals just at the beginning of their careers,
losing opportunities to gain experience and a foothold in the labor
market can have major, long-term impacts. For example, the millennial
generation, who entered the workforce during the height of the Great
Recession, is estimated to have relatively low levels of home
ownership, net worth and real income compared to previous
generations.\6\
---------------------------------------------------------------------------
\6\ Federal Reserve Bank of St. Louis, The Demographics of Wealth,
How Education, Race and Birth Year Shape Financial Outcomes, 2018.
Retrieved from https://www.stlouisfed.org/ /media/files/pdfs/hfs/
essays/hfs_essay_2_2018.pdf?la=en.
---------------------------------------------------------------------------
Unemployment trends during the pandemic have shown that upskilling
and reskilling needs have already increased, and we can expect that
will continue. CTE programs are instrumental in delivering high-quality
education programs aligned with in-demand careers. It is projected that
some--but not all--of the jobs lost during the pandemic will come back
in one form or another. One study estimates approximately 60 percent of
job loss will be temporary, while other studies predict about a quarter
of job losses will be permanent. What is not in question is that the
economy will look different on the other side of the recovery, with
marginalized communities the most likely to be impacted, given Latinx
Americans have been the most likely to have hours or shifts reduced and
Black Americans have been the most likely to have been laid off during
this crisis.\7\
---------------------------------------------------------------------------
\7\ https://www.stradaeducation.org/wp-content/uploads/2020/04/
Public-Viewpoint-Report-Week-4.pdf.
---------------------------------------------------------------------------
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. Looking at 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. There is
growing data that suggest that those who lost their jobs due to the
coronavirus will pursue CTE-focused programs and degrees. About a third
of adults report that, if they lose their jobs, they would need more
education to replace them. Consider:
--A third of adults report they would potentially change careers.
--Two-thirds of adults interested in enrolling in postsecondary
education and training in the next six months would do so to
upskill or reskill.
--A majority of American workers say they prefer non-degree and
skill-based education and training programs in today's economy.
This all aligns with outcomes from the last recession, with over 50
percent of displaced workers changing industries when they re-entered
the workforce.\8\
---------------------------------------------------------------------------
\8\ The White House, Addressing America's Reskilling Challenge,
2018. Retrieved from https://www.whitehouse.gov/wp-content/uploads/
2018/07/Addressing-Americas-Reskilling-Challenge.pdf.
---------------------------------------------------------------------------
Just as all education programs have been hit hard by the pandemic,
so have CTE programs. This has been exacerbated by the lack of CTE-
designated funding in stimulus 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 coronavirus 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 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.
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, but need additional support. Jobs
that require more than a high school diploma but less than a
baccalaureate degree were growing before the pandemic, and will
continue to do so now. Further, automation coupled with the
unemployment rate requires nimble, proactive, and responsive CTE and
workforce programs that provide specific technical as well as
transferable skills. 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 this, no stimulus package during the pandemic has included
CTE-designated funding. Although Perkins V has been named as an
authorized use of some of the funding under the Education Stabilization
Fund in each package, there is no guarantee that money will be
allocated to CTE programs.
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.\9\ 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.\10\ Furthermore, those
students are highly likely to continue their education-91 percent of
high school graduates who earned two to three CTE credits enrolled in
college.\11\
---------------------------------------------------------------------------
\9\ Perkins Collaborative Resource Network, Perkins Data Explorer,
customized Consolidated Annual Report data. https://perkins.ed.gov/
pims/DataExplorer; U.S. Department of Education, Office of Elementary
Secondary Education, Consolidated State Performance Report, 2010-11
through 2016-17.
\10\ Kotamraju, P. Measuring the return on investment for CTE.
Techniques: 28-31, 2011. Retrieved from https://files.eric.ed.gov/
fulltext/EJ943149.pdf.
\11\ U.S. Department of Education, National Center for Education
Statistics, Data Point: Career and Technical Education Coursetaking and
Postsecondary Enrollment and Attainment: High School Classes of 1992
and 2004, 2016. Retrieved from https://nces.ed.gov/pubs2016/
2016109.pdf.
---------------------------------------------------------------------------
The outcomes for adult learners are also significant: 84 percent of
adults concentrating in CTE programs either continued their education
or were employed within six months of completing their program.\12\ In
fact, 90 percent of Americans agree that apprenticeships and skills
training programs prepare individuals for a good standard of
living.\13\
---------------------------------------------------------------------------
\12\ Includes only states that report data on adult CTE learners to
the U.S. Department of Education. Perkins Collaborative Resource
Network, Perkins Data Explorer, customized Consolidated Annual Report
data. Retrieved from https://perkins.ed.gov/pims/DataExplorer/
Performance.
\13\ New America, Varying Degrees 2018: Executive Summary.
Retrieved from https://www.newamerica.org/education-policy/reports/
varying-degrees-2018/executive-summary/.
---------------------------------------------------------------------------
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,\14\ while individuals who
receive a certificate or degree from California Community Colleges
almost double their earnings within three years.\15\ In Wisconsin,
taxpayers receive $12.20 in return for every dollar invested in the
technical college system.\16\ Oklahoma's economy reaps a net benefit of
$3.5 billion annually from graduates of the CareerTech System.\17\ 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 $2.5
billion in Perkins CTE State Grants.
---------------------------------------------------------------------------
\14\ Workforce Training and Education Coordinating Board, Workforce
Training Results 2020. Retrieved from https://www.wtb.wa.gov/wp-
content/uploads/2020/01/2020-Dashboard.pdf.
\15\ Foundation for California Community Colleges, California
Community Colleges, n.d. Retrieved from https://foundationccc.org/
Portals/0/Documents/NewsRoom/FactSheets/ccc-facts-figures.pdf.
\16\ Wisconsin Technical College System, The Technical College
Effect, 2016. Retrieved from https://www.wistechcolleges.org/sites/
default/files/POSTER8.5x11-2016update2_0.pdf.
\17\ Snead, M. C., The Economic Contribution of CareerTech to the
Oklahoma Economy: Cost-Benefit Analysis of Career Majors (FY11), 2013.
Retrieved from https://www.okcareertech.org/about/costbenefit-analysis-
of-career-majors/cost-benefit-analysis-of-career-majorsfy-11-pdf.
---------------------------------------------------------------------------
CTE programs are also preparing individuals with the skills that
employers seek. A 2020 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.
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.\18\ Half of all STEM
occupations, which offer students high-skilled, high-wage career
opportunities, require less than a bachelor's degree.\19\ 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.\20\
---------------------------------------------------------------------------
\18\ U.S. Department of Labor, Bureau of Labor Statistics,
Occupational Outlook Handbook, Healthcare Occupations. Retrieved from
https://www.bls.gov/ooh/healthcare/home.htm.
\19\ Rothwell, J. The Hidden STEM Economy, Brookings Institution,
2013. Retrieved from https://www.brookings.edu/research/the-hidden-
stem-economy/.
\20\ Georgetown University Center on Education and the Workforce,
Good Jobs that Pay Without a BA, 2017. Retrieved from https://
goodjobsdata.org/wp-content/uploads/Good-Jobs-wo-BA-final.pdf.
---------------------------------------------------------------------------
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.\21\ 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.\22\ Highly-skilled workers deliver direct benefits to
American employers through enhanced productivity and innovation;
however, the increased demands on the workforce pipeline are a
persistent barrier to economic growth. A projected three million
workers are needed to fill infrastructure jobs in the next few years,
including careers in construction, transportation and
telecommunications.\23\ Meanwhile, 89 percent of executives agree there
is a talent shortage in the U.S. manufacturing sector, 5 percent higher
than 2015 results.\24\ These industries still need talent, even in the
current economic climate.
---------------------------------------------------------------------------
\21\ U.S. Department of Education, Office of Planning, Evaluation
and Policy Development, Policy and Program Studies Service, National
Assessment of Career and Technical Education: Final Report to Congress,
2014. Retrieved from https://www2.ed.gov/rschstat/eval/sectech/nacte/
career-technical-education/final-report.pdf.
\22\ College Board, Average published charges, 2018-19 and 2019-20.
Retrieved from https://research.collegeboard.org/trends/college-
pricing/figures-tables/average-published-charges-2018-19-and-2019-20.
\23\ Kane, J. W., and Tomer, A. Infrastructure skills: Knowledge,
tools, and training to increase opportunity, Brookings Institution,
2016. Retrieved from https://www.brookings.edu/research/infrastructure-
skills-knowledge-tools-and-training-to-increase-opportunity/.
\24\ Deloitte and the Manufacturing Institute, Skills Gap and the
Future of Work Study, 2018. Retrieved from http://
www.themanufacturinginstitute.org/ /media/E323C4D8F75A470E8C96D7
A07F0A14FB/DI_2018_Deloitte_MFI_skills_gap_FoW_study.pdf; Deloitte and
the Manufacturing Institute, The skills gap in U.S. manufacturing 2015
and beyond, 2015. Retrieved from http://
www.themanufacturinginstitute.org/ /media/
827DBC76533942679A15EF7067A704CD.ashx.
---------------------------------------------------------------------------
Funding Perkins V at adequate levels will ensure that educators can
equip students with the skills they will need for in-demand fields.
This will become increasingly pressing as the country continues to
recover from the current health pandemic and economic crisis. Already,
healthcare jobs are projected to have the largest increase of any
occupational sector.\25\ Filling these and other positions created, as
well as ensuring that each individual is able to access the training
needed for employment, is critical.
---------------------------------------------------------------------------
\25\ U.S. Department of Labor, Bureau of Labor Statistics,
Occupational Outlook Handbook, Healthcare Occupations. Retrieved from
https://www.bls.gov/ooh/healthcare/home.htm.
---------------------------------------------------------------------------
CTE programs can serve even more learners and employers--but only
if they receive more resources. According to The Bureau of Labor
Statistics Job Openings and Labor Turnover Survey (JOLTS) Highlights
for May 2021, the ratio of unemployed workers to job openings is 1.2,
meaning that for 9.8 million unemployed workers there are only 9.1
million jobs available.\26\ As more jobs lost during the pandemic
become permanent, CTE remains a critical component to the workforce
pipeline for key industries that are needed to sustain a long-term
economic recovery, such as healthcare, STEM, manufacturing,
construction and transportation distribution and logistics. But,
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.
---------------------------------------------------------------------------
\26\ U.S. Department of Labor, Bureau of Labor Statistics, Job
Openings and Labor Turnover Survey (JOLTS) Highlights; January 2020.
Retrieved from https://www.bls.gov/web/jolts/jlt_labstatgraphs.pdf.
---------------------------------------------------------------------------
And there's widespread support for CTE: 94 percent of parents
approve of expanding access to CTE.\27\ 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.\28\
As the chart below demonstrates, between FY2004 and FY2020, funding for
CTE State Grants declined by over $77 million dollars, the equivalent
of $427 million inflation-adjusted dollars (i.e., 28 percent in
inflation-adjusted dollars).
---------------------------------------------------------------------------
\27\ Hart Research Associates, Public School Parents on the Value
of Public Education: Findings from a National Survey of Public School
parents conducted for the AFT, September 2017. Retrieved from https://
www.aft.org/sites/default/files/parentpoll2017_memo.pdf.
\28\ U.S. Department of Education, National Center for Education
Statistics, Career and Technical Education Programs in Public School
Districts: 2016-17. Retrieved from https://nces.ed.gov/pubs2018/
2018028.pdf.
---------------------------------------------------------------------------
Taking a longer view, before 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.\29\ Congress recognized the need to begin to reverse
this trend and from FY18 to FY21 provided an additional $217 million
for CTE State Grants, bringing the total investment to $1.342 billion.
While the past four budgets represented initial down payments to meet
increased need, a significant, robust investment in CTE programs is
still imperative to account for persistent underfunding, the lack of
inflation-adjusted increases, and most importantly, the overwhelming
growth in demand for these programs from both learners and the American
economy. Congress should build on the momentum from recent years and
continue to strengthen the investment in CTE State Grants in FY2022.
And, Americans agree: 93 percent of voters support increasing the
investment in skills training.\30\
---------------------------------------------------------------------------
\29\ U.S. Bureau of Labor Statistics, CPI Inflation Calculator.
Retrieved from https://data.bls.gov/cgi-bin/cpicalc.pl.
\30\ ALG Research, Poll Finds Overwhelming Support for More Funding
for Skills Training, 2019. Retrieved from https://
www.nationalskillscoalition.org/news/press-releases/body/Poll-Finds-
Overwhelming-Support-for-More-Funding-for-Skills-Training.pdf.
---------------------------------------------------------------------------
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 FY 2022 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 double down and ensure CTE programs are available for every
learner who seeks to better their own lives and opportunities
Thank you for your thoughtful consideration of our request. For
more information or if you wish to discuss our request, please contact
ACTE's Government Relations Manager Michael Matthews
([email protected]) or Advance CTE's Senior Associate for
Federal Policy Associate Meredith Hills ([email protected]).
______
Prepared Statement of the Association for Clinical Oncology
The Association for Clinical Oncology (ASCO), the world's leading
professional organization representing nearly 45,000 physicians and
other professionals who treat people with cancer, thanks this
subcommittee for its long-standing commitment to support federally
funded research at the National Institute of Health (NIH) and National
Cancer Institute (NCI). ASCO is extremely grateful for the $1.25
billion increase for the NIH in fiscal year (FY) 2021. 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 FY2022 funding to build on
our nation's investment in biomedical research:
--National Institutes of Health (NIH): $46.111 billion
--National Cancer Institute (NCI): $7.609 billion
-- Beau Biden Cancer Moonshot Initiative: $194 million
--Centers for Disease Control and Prevention's (CDC) Division of
Cancer Prevention and Control (DCPC): $559 million
--Cancer Registries Program: $70 million
the nih: a good investment
In FY2020, 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 last year.\2\
---------------------------------------------------------------------------
\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.
---------------------------------------------------------------------------
The importance of federally funded biomedical research has been on
display over the last year as scientists from all corners of the
country worked to quickly develop effective COVID-19 vaccines.
Researchers working towards a vaccine were not starting from scratch;
years of federally funded research progress 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--a result of years of research and scientific
discovery--is a testament to the need for continued investment.
Despite recent funding increases, the COVID-19 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. The funding levels we are
requesting for FY2022 would aid in recovery from these setbacks and
allow meaningful growth above biomedical inflation for the first time
in over a decade. They 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
This year marks the 50th anniversary of the passage of the National
Cancer Act of 1971, which established the NCI in its current form. Over
the last 30 years alone, the cancer death rate has fallen 31%. This
includes a 2.4% decline from 2017 to 2018--a record for the largest
one-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. In 2021, almost 1.9 million new cancer cases will be
diagnosed, and more than 600,000 people will die from cancer.\3\
---------------------------------------------------------------------------
\3\ American Cancer Society; https://www.cancer.org/content/dam/
cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-
and-figures/2021/cancer-facts-and-figures-2021.pdf.
---------------------------------------------------------------------------
The time is ripe for a renewed commitment for robust NCI funding.
ASCO is grateful for funding provided to the Beau Biden Cancer Moonshot
Initiative and its focus on modernizing clinical trials, establishing a
direct patient engagement network, developing a national cancer data
ecosystem, continuing advances in precision oncology, and developing
effective immunotherapies for a broader array of cancers. However,
funding for the Initiative peaked FY2019, and dropped to $195 million
in FY2021; FY2023 will mark the last year of authorized Moonshot
funding. ASCO urges Congress to bolster NCI funding in anticipation of
the end of the Cancer Moonshot Initiative.
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. While the NCI has received modest funding increases over the
last few years, funding has not kept up with the growth of research
grant applications as compared to other NIH Institutes or Centers. In
fact, over the last five years R01 grant applications submitted to the
NCI rose by 50%, while funding only grew by 20%. This means NCI is
funding a smaller proportion of grant applications compared to previous
years. Only 10% of viable applications received funding in 2020
compared to 28% 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% of grant applications by 2025. Unfortunately, the President's
FY2022 budget proposal of $6.733 billion for the NCI would not allow
for an increase in funded applications for 2022. ASCO's request of
$7.609 billion for FY2022 would allow NCI to fund 12% of grants
submitted, a modest increase, but a step closer to their own goal.\4\
---------------------------------------------------------------------------
\4\ National Cancer Institute; https://www.cancer.gov/research/
annual-plan/2022-annual-plan-budget-proposal-aag.pdf.
---------------------------------------------------------------------------
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 twelve and older and who have been identified as
candidates for benefitting from those treatments because of a promising
tumor biomarker target identified in their cancer. TAPUR evaluates use
of these molecularly targeted anti-cancer drugs and collects data on
clinical outcomes. As of May 2021, there are over 2,130 participants
enrolled in the TAPUR Study at 128 sites in 24 states. Without federal
investment spurring the pipeline of new cancer treatments, studies such
as TAPUR would not be possible.
To maintain access to research for cancer patients, ASCO urges a
substantial increase in funding for the National Clinical Trials
Network (NCTN) and NCI Community Oncology Research Program (NCORP).
Just last year, the NCI awarded 53 grants to researchers at 46 NCORP
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.\5\ An increase in NCI's budget would enable
the Institute to maintain or increase the number of accruals to trials
and cover the cost of conducting research.
---------------------------------------------------------------------------
\5\ National Cancer Institute; https://ncorp.cancer.gov/news/2019-
08-19.html.
---------------------------------------------------------------------------
cancer registries & clinical trials: harnessing data & reducing
disparities
We have seen tremendous progress in cancer research. Even so, with
more targeted and patient-specific therapies in development, certain
populations are still missing out on potentially life-threatening
treatment options. ASCO was encouraged to see the CLINICAL TREATMENT
Act become law at the end of 2020. This legislation will require
Medicaid to cover routine care costs for clinical trials for patients
with life-threatening conditions. A step forward, but barriers remain;
diversity and generalizability of clinical trials is crucial for making
trial results applicable more broadly and to ensure positive clinical
outcomes for all patients. We hope to continue our work with Congress,
NCI, and the Centers for Medicare and Medicaid Services (CMS) to
improve access to clinical trials for underrepresented patient
populations.
As a compliment to inclusive trials, cancer providers and
researchers also need accessible data to understand cancer at a broader
level. This data can prove especially crucial for rare and pediatric
cancers, where trials are limited due to smaller patient populations.
To that end, ASCO joins the cancer community in requesting $559 million
for the CDC's Division of Cancer Prevention and Control (DCPC), and $70
million for the CDC's Cancer Registries Program. Cancer registries are
a critical tool for providers and researchers, providing cancer
surveillance, identifying trends amongst different patient cohorts,
illustrating the impact of early detection, and showing the impact of
treatment advances on cancer outcomes. Registries allow providers to
collect data in real time and improve cancer research, public health
interventions and treatment protocols. While we work towards greater
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
proposed 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 to clinically impactful
products that help patients is vital. Additionally, any efforts to
establish a new agency or 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.
Any 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 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. Finally, as
previously discussed, all patients should have access to the 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 should implement strategies
to encourage decentralization of trials and ensure diversity and equity
in research.
mitigating the effects of covid-19 and continuing the work towards
cures
As with nearly every sector of society, individuals in the research
community have faced loss of employment, lab closures, and loss of
momentum in pre-pandemic research. Younger investigators and support
staff have been especially vulnerable during the last year. Our
clinical trials network has also been impacted; one study showed that
clinical trial enrollment in May 2020 was 73% lower than accrual in May
2019.\6\ Another study found the COVID-19 pandemic was associated with
a 60% decrease in the number of launches of oncology clinical trials of
drugs and biologic therapies.\7\ In May 2021, NCI Director Ned
Sharpless, M.D. speculated that clinical trial accrual was still just
50% of what it had been pre-pandemic.
---------------------------------------------------------------------------
\6\ U.S. National Institutes of Health's National Library of
Medicine; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7538012/#ref
\5\.
\7\ The Journal of the American Medical Association https://
jamanetwork.com/journals/jamanetworkopen/fullarticle/2775637.
---------------------------------------------------------------------------
To regain the momentum over the last few years, lawmakers and
researchers will need to work together to mitigate COVID-19 related
disruptions to research and restore momentum across the nation's
medical research network. Therefore, I urge you to prioritize the
important role NIH and NCI play in medical innovation and economic
growth by protecting and strengthening federally funded research in
FY2022.
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
FY2022 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 Psychological Science
aps recommendations for fiscal year 2021 appropriations
_______________________________________________________________________
--APS strongly supports the Administration's request for $51 billion
for NIH in FY 2022. We are eager to see the details of the
President's request. We appreciate the Administration's
commitment to meaningful growth in the base budget and
expanding NIH's capacity to support promising research in all
scientific fields that contribute to improved health.
--APS is pleased that an NIH working group has been established to
review how to integrate and realize the benefits of overall
health from behavioral research at NIH, but we request Congress
include report language urging that this review also address
the necessary funding, authority, and organizational changes
needed for the Office of Behavioral and Social Sciences
Research (OBSSR) to better meet its mission. OBSSR has the
mission to enhance NIH's behavioral science research enterprise
across all institutes and centers. Its direct authorities to
achieve its mission, however, are limited. OBSSR does not
report directly to the NIH Director and has no grantmaking
authority. Importantly, with a small budget of less than 1/1000
of NIH's overall budget, it has limited capacity to leverage
institutes' research priorities. APS urges that these
limitations be addressed in the NIH review.
--Finally, APS asks the Committee to favorably consider the requests
of the Psychological Clinical Science Accreditation System
(PCSAS) to urge the modification of HRSA and National Health
Service Corps regulations to permit the graduates of PCSAS-
accredited schools to be eligible for employment in these
programs. APS believes that the strong emphasis on science in
PCSAS accreditation offers promise of improved prevention and
treatment interventions which will strengthen HRSA and the
National Health Service Corps programs.
_______________________________________________________________________
statement of aps executive director
Chairwoman Murray, Ranking Member Blunt, and Members of the
Subcommittee, thank you for the opportunity to provide testimony as you
consider funding priorities for Fiscal Year (FY) 2022. I am Robert
Gropp, Executive Director of the Association for Psychological Science
(APS). APS is a nonprofit scientific organization dedicated to
advancing the science of psychology for the benefit of science and
society. APS recognizes and appreciates the Subcommittee's efforts to
strengthen public health research in the United States.
funding for the national institutes of health and policy issues
As previously noted, APS recommends an FY 2022 funding level of $51
billion for NIH, which would enable real growth over health research
inflation as an important step to ensuring stability in the Nation's
research capacity over the long term. In addition to funding
priorities, APS is concerned about several policy issues at HHS.
1. Inclusion of Psychologists in the Pandemic Response: Nearly
600,000 Americans have died from COVID-19. This is a tragedy that is
based in human behavior, both in the human response necessary to stop
the spread of the disease as well as the disproportionate impact of the
disease on health disparity and racial and ethnic minority populations.
Research from psychological science must be one of the inputs informing
an effective public health emergency response. Psychology research
teaches us how to encourage individuals to practice safe behaviors and
receive vaccines, for example. But psychological scientists investigate
fundamental science questions, too. For instance, improved scientific
understanding of risk assessment, social motivations, and interpersonal
relationships can powerfully influence the spread of infectious
diseases. Psychological science helps us address consequences of social
distancing such as loneliness and emerging threats to mental health.
Researchers in our field have proven essential to improving our
understanding and addressing COVID-19's impact. APS urges that the
following report language be included in the FY 2022 Labor-HHS Report:
Behavioral Science and the COVID-19 National Strategy.--The
Committee applauds the Administration's robust National
Strategy for the COVID-19 Response and Pandemic Preparedness
and appreciates that the strategy reflects the best advice of
scientists and public health experts. However, even with
effective and safe vaccinations, we must continue and expand
mask-wearing, testing, and social distancing; all citizens,
organizations, and communities must rally together in that
common purpose. As our success in these areas depends on our
scientific understanding of human behavior, the Committee urges
that the Department include psychological scientists at every
level of the Department's response to COVID-19 and future
public health emergencies to best and most effectively meet
these common goals.
2. Behavioral Science at NIH: The NIH mission is to ``seek
fundamental knowledge about the nature and behavior of living systems
and the application of that knowledge to enhance health, lengthen life,
and reduce illness and disability.'' APS is concerned by the continued
low level of funding support for behavioral science research and
training at NIH despite the central importance of this research to all
dimensions of human health. APS is pleased that the NIH Council of
Councils created a new Behavioral Sciences Working Group on Integration
and Realization of the Benefits to Health from Behavioral Research at
NIH to complete an assessment providing recommendations on how NIH-
funded behavioral research can be better integrated with the NIH
research programs to improve health. There is concern, however, that
this working group may not look beyond current structures and
practices. We request that the following report language be included in
the FY 2022 Labor-HHS Report to direct NIH to ensure that appropriate
OBSSR funding levels, authority, and organizational structure be
included in this review.
Enhancements for the Office of Behavioral and Social Sciences
Research.--The Committee notes that the Office of Behavioral
and Social Sciences Research (OBSSR) has the mission to enhance
NIH's behavioral science research enterprise across all
institutes and centers. As multiple Surgeons General and the
National Academy of Medicine have declared that most health
problems facing the nation have significant behavioral
components, the Committee strongly supports the continued
strengthening of the behavioral science enterprise at NIH and
urges OBSSR funding and authorities be increased to accomplish
this mission. In this regard, the Committee is pleased that an
NIH working group has been established to review how better to
integrate and realize the benefits of overall health from
behavioral research at NIH, and directs that appropriate OBSSR
funding levels, authority, and organizational structure be
included in this review.
updating hrsa and national health service regulations
APS requests the Committee favorably consider the requests of the
Psychological Clinical Science Accreditation System (PCSAS) to urge the
modification of HRSA and National Health Service Corps regulations to
permit the graduates of PCSAS-accredited schools to be eligible for
employment in these programs. The strong emphasis on science in PCSAS
accreditation offers promise of improved prevention and treatment
interventions that will strengthen HRSA and the National Health Service
Corps.
PCSAS was recognized by the Council for Higher Education
Accreditation (CHEA) in 2012 and now accredits 45 of the Nation's
doctoral clinical science programs. CHEA is the largest higher
education membership organization in the United States. It is a
national body formed by 3,000 universities which reviews and screens
applications from organizations to serve as accrediting bodies for the
professions. CHEA is widely recognized as a primary national voice for
accreditation and quality assurance. After a thorough review, CHEA
approved the Psychological Clinical Science Accreditation System
(PCSAS) in September 2012 to accredit schools of clinical psychology.
Prior to 2012, the American Psychological Association (APA) was the
only accrediting body for clinical psychology programs. Many agency
regulations are outdated and refer to the need for applicants for
employment to have graduated from APA accredited programs. This
historical artifact needs to be updated for HRSA and the National
Health Service Corps. Doing so will help to ensure the federal
government is able to recruit and hire top quality psychologists,
regardless of whether they are from an APA or PCSAS accredited graduate
program.
1. Updating Two HRSA Health Professions Programs Regulations is
Necessary: HRSA's two psychology education training programs, called
the Behavioral Health Workforce Education and Training Program (BHWET)
and the Graduate Psychology Education Program (GPE), support programs
that produce graduates who work in clinical psychology practice upon
completion of their program. The authorizing statute in the Public
Health Service Act at 756(a)(2) specifically says the Secretary may
make grants for the ``...training of psychology graduate students for
providing behavioral and mental health services...''; however, the
authorizing legislation limits eligibility to the graduates of APA-
accredited programs. This excludes the graduates of PCSAS-accredited
programs. FY 2021 report language is requested to open program
eligibility to the graduates of PCSAS accredited programs. The language
follows:
Health Workforce Eligibility Requirements.--The Committee is
concerned that HRSA has not complied with the language in the
Joint Explanatory Statement for Public Law 216-260 which urged
HRSA to update eligibility requirements for the BHWET program
and the GPE program to account for accreditation changes that
have occurred since the eligibility requirements were
established. The Committee notes the Council for Higher
Education Accreditation, as well as the Department of Veterans
Affairs, recognizes the Psychological Clinical Science
Accreditation System [PCSAS]. HRSA is directed to make the
necessary administrative updates to ensure that HRSA's health
workforce programs continue to have access to the best
qualified applicants, including those who graduate from PCSAS
programs.
2. Updating National Health Service Corps Regulations is Necessary:
The regulations of the National Health Service Corps also need to be
updated. While this change has been agreed to, it remains pending for
final approval. The language needed to urge this change follows:
Public Health Service Corps Eligibility Requirements.--The
Committee is concerned that the Office of the Surgeon General
has not complied with the language in the Joint Explanatory
Statement for Public Law 216-260 which encouraged the Secretary
to update accreditation and eligibility requirements for the
Public Health Service Corps to allow access to the best
qualified applicants, including those who graduate from
Psychological Clinical Science Accreditation System programs.
The Committee directs the Department to make these necessary
the necessary changes to its eligibility requirements.
summary and conclusion
We thank the Subcommittee for its ongoing commitment to supporting
scientific research that improves the human condition in the United
States and around the world. Reducing barriers to research and training
in behavioral science is warranted by the central role of behavior in
many of our most pressing health problems and by the enormous potential
of psychological science and other behavioral science disciplines to
reduce the suffering experienced by the millions of people with
behavior-based conditions. APS shares your commitment to addressing the
health needs of the Nation and appreciates the opportunity to provide
this testimony.
[This statement was submitted by Robert Gropp, Executive Director,
Association for Psychological Science.]
______
Prepared Statement of the Association for Research in Vision
and Ophthalmology
executive summary
The Association for Research in Vision and Ophthalmology (ARVO), on
behalf of the eye and vision research community, thanks Congress,
especially the House and Senate LHHS Appropriations Subcommittees, for
the strong bipartisan support for the National Institutes of Health
(NIH) funding increases from Fiscal Year (FY) 2016 through FY2021.
This past investment in NIH has improved our understanding of
fundamental life and health sciences and prepared the nation to combat
unprecedented health threats, including COVID-19. To maintain this
momentum in FY2022, ARVO strongly supports $51.95 billion in NIH
funding as proposed by President Biden, including no less than $46.1
billion for NIH's base program level budget (absent proposed funding
for the Advanced Research Projects Agency--Health [ARPA-H]), an
increase of at least $3.177 billion or 7.4%, which would allow NIH's
base budget to keep pace with the Biomedical Research and Development
Price Index (BRDPI) and allow for 5% growth. This increase will support
promising science across all Institutes and Centers (ICs), ensure
continued Innovation Account funding established through the 21st
Century Cures Act for special initiatives, and support early-stage
investigators.
Along with our partners and other scientific societies, ARVO also
urges one-time emergency funding for federal agency ``research
recovery'' investment to enable NIH to mitigate pandemic-related
disruptions without foregoing promising new science. ARVO supports the
bipartisan Research Investment to Spark the Economy (RISE) Act (H.R.
869/S. 289) which includes $10 billion for NIH.
ARVO also urges Congress to fund the NEI at $900 million, a $64.3
million or 7.7% increase over FY2021 that reflects both biomedical
inflation and growth, compared to the Administration's suggested $858.4
million funding level-a $22.83 million or 2.7% increase. Despite NEI's
total $160 million funding increases in the FY2016-2021 timeframe, its
enacted FY2021 budget of $835.7 million is just 19% greater than the
pre-sequester FY2012 funding of $702 million. Averaged over those nine
fiscal years, the 2.1% annual growth rate is still less than the
average annual biomedical inflation rate of 2.7%, thereby eroding
purchasing power. In fact, NEI's FY2021 purchasing power is less than
that of FY2012.
The NEI currently faces an increasing burden of vision impairment
and eye disease due to an aging population, the disproportionate risk/
incidence of eye disease in minority populations, and the impact on
vision from numerous chronic diseases, such as diabetes. NEI also faces
additional challenges with the COVID-19 pandemic, as both the working-
age population and students have relied almost exclusively on
electronic devices and e-learning platforms, which research has shown
correlates to increased rates of myopia, dry eye and eye strain.
Maintaining the momentum of eye and vision research is vital to
vision health and to overall health and quality of life and would
secure the U.S. as the world leader in eye and vision research and
training the next generation of eye and vision scientists.
nei-funded research saves sight and restores vision
Historical federal investment has led to landmark advances in the
prevention of vision loss as well as the restoration of vision,
including:
--Audacious Goals Initiative: The NEI has been at the forefront of
regenerative medicine with its Audacious Goals Initiative
(AGI), launched in 2013 with the goal of restoring vision. AGI-
funded consortia have developed innovative ways to image the
visual system such that researchers can now look at individual
nerve cells in the eyes of patients to learn directly whether
new treatments are successful. Another consortium has
identified biological factors that allow neurons to regenerate
in the retina, and current AGI proposals 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 to show
that the Vascular Endothelial Growth Factor (VEGF) protein
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. NEI has funded
comparison trials of anti-VEGF drugs to provide clinicians and
patients with information they need to choose the best
treatment options. With respect to the ``dry'' form of AMD,
also known as geographic atrophy and is the leading cause of
vision loss among individuals age 65+, since 2019 NEI has been
performing 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 eye and 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 understand disease biology and the
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 known as Leber congenital amaurosis (LCA). As of late
2017, NEI's initial efforts led to a commercialized FDA-
approved gene therapy for this condition. These gene-based
discoveries form the basis of new therapies that treat and may
prevent the disease.
--Front-of-Eye Research: The NEI has launched an Anterior Segment
Initiative (ASI) studying clinically significant, front-of-eye
problems such as ocular pain and Dry Eye Disease (DED),
especially in terms of pain and discomfort sensations and
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.
nei funding demonstrates signifigant return on investment
Optical coherence tomography (OCT) is a technology developed with
federal research funding through the NIH, which has led to significant
cost savings by helping to diagnose conditions that lead to vision loss
among patients more efficiently. In 2017, ARVO shared the story of OCT,
including the significant associated cost savings:
--$9 billion: Medicare savings from clinicians using OCT to optimize
the injection schedule of anti-VEGF drugs for patients with
wet-AMD
--$2.2 billion: Wet-AMD patient savings from reduced spending on drug
copays
--$0.4 billion: Total investment over 20 years made by NIH and NSF to
invent and develop the technology
--2,100%: Return on taxpayer investment
[http://www.ajo.com/article/S00029394(17)30419-1/fulltext]
nei research addresses increasing burden of eye disease
NEI's FY2021 enacted budget of $835.7 million is less than 0.5% of
the $177 billion annual cost (inclusive of direct and indirect costs)
of vision impairment and eye disease, which was projected in a 2014
Prevent Blindness study to grow to $317 billion--or $717 billion in
inflation-adjusted dollars--by year 2050. Of the $717 billion annual
cost of vison impairment by year 2050, 41% will be borne by the federal
government as the ``Baby Boomer'' generation ages into the Medicare
program. A 2013 Prevent Blindness study reported that direct medical
costs associated with vision disorders are the fifth highest--only less
than heart disease, cancers, emotional disorders, and pulmonary
conditions. The U.S. is spending only $2.53 per person, per year for
eye and vision research, while the cost of treating low vision and
blindness is at least $6,680 per person, per year. [http://
costofvision.preventblindness.org/]
Investing in vison health is an investment in overall health. In
summary, ARVO requests FY2022 NIH funding of at least $51.95 billion,
but urges the Subcommittee to appropriate no less that $46.1 billion
for the NIH's base program level. Further, we request NEI funding of
$900 million. ARVO also supports one-time emergency ``research
recovery'' investment to mitigate the pandemic-related disruptions
without foregoing promising new science.
The Association for Research in Vision and Ophthalmology (ARVO) is
the largest eye and vision research organization in the world. Members
include approximately 10,000 eye and vision researchers from over 75
countries.
______
Prepared Statement of the Association of American Cancer Institutes
The Association of American Cancer Institutes (AACI), representing
102 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) 2022 funding. AACI requests a $3.177 billion increase for the NIH
for FY 2022, bringing the recommended funding level for the NIH to
$46.111 billion. This proposed level of NIH funding would ensure that
academic cancer centers conducting lifesaving research can continue to
discover and deliver new therapies for patients with cancer. AACI also
requests at least $7.609 billion in FY 2022 for the National Cancer
Institute (NCI).
Additionally, we look forward to seeing what comes of the $6.5
billion proposal for an Advanced Research Projects Agency-Health (ARPA-
H) that was laid out in President Biden's Fiscal Year 2022 (FY22)
budget. We appreciate the proposal outlining cancer as a primary
initial focus of ARPA-H. We are pleased with any expenditures that
include more funding for cancer research; however, our hope is that the
APRA-H proposal will not be diverting any funding from base funding for
the NIH or the NCI. As Congress moves into the Fiscal Year 2022 (FY22)
budget process and consideration of an infrastructure package, 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, from prevention to survivorship, to
patients. These centers are at the forefront of the national effort to
eradicate cancer, yet progress in cancer research is complex and time-
intensive. The pace of discovery and translation of novel basic
research to new therapies can be accelerated if researchers are able to
count on an appropriate and predictable investment in federal cancer
funding.
covid-19 challenges
The COVID-19 pandemic has taken a significant toll on medical
research, making increased funding more critical than ever. Clinical
trials were brought to a halt and trial sites experienced challenges
with safely facilitating care for enrolled patients and freezing the
process of enrolling new patients.
As noted in last year's testimony, American Cancer Society data
show that the mortality rate from cancer in the United States has
declined 29 percent since its peak in 1991. This translates to more
than 2.9 million deaths avoided between 1991 and 2016--progress tied to
the commitment of Congress to fund the NIH and NCI.\1\ Dr. Norman E.
Sharpless, NCI director, has stated that the COVID-19 pandemic will
influence cancer mortality for at least the next decade, with an
estimated 10,000 additional breast and colorectal cancer deaths during
this time.\2\ Further, the NCI reports that an increase in overall
cancer mortality rates for the first time in almost 30 years is likely
due to the impact of COVID-19. But the pandemic has taught us important
lessons about the benefits of scientific progress to public health.
---------------------------------------------------------------------------
\1\ https://www.cancer.org/latest-news/facts-and-figures-2020.html.
\2\ https://cancerletter.com/nci-director-report/20200619_1/.
---------------------------------------------------------------------------
The future of cancer research relies on robust funding to the NIH
and NCI. The broad portfolio of science supported by these agencies is
essential for improving our basic understanding of cancer and has
contributed to the health and well-being of Americans. We cannot let
the challenges of the last year slow this meaningful progress.
payline
Uncertainty surrounding research project grants (R01s) from year to
year and a decline in cancer center resources often drives promising
scientists to explore opportunities abroad or outside of the biomedical
research community. For most academic cancer centers, the majority of
NCI grant funds are used to sustain shared core resources that are
essential to basic, translational, clinical, and population cancer
research, or to provide matching dollars that allow departments to
recruit new cancer researchers to a university and support them until
they receive their first grants. It is imperative that we enable
America's scientists to master their craft.
We noted last year that in FY 2020, R01 grants for established and
new investigators are 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.\3\ We request that Congress build on progress with a
FY 2022 funding increase to meet the goal of raising the NCI payline to
the 15th percentile by FY 2025. AACI supports the NCI Director's
Professional Judgment Budget Proposal for FY 2022 of $7.609 billion for
the NCI, which will increase funding to the 12th percentile.\4\
---------------------------------------------------------------------------
\3\ https://www.cancer.gov/grants-training/nci-bottom-line-blog/
2021/funding-from-congress-allows-nci-to-raise-grants-payline.
\4\ https://www.cancer.gov/research/annual-plan/budget-proposal.
---------------------------------------------------------------------------
conclusion
Now is the time for Congress to invest in biomedical research--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 2021.\5\ 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 2022
spending package that includes $46.111 billion for the NIH and $7.609
billion for the NCI.
---------------------------------------------------------------------------
\5\ https://www.cancer.org/research/cancer-facts-statistics/all-
cancer-facts-figures/cancer-facts-figures-2021.html.
---------------------------------------------------------------------------
A robust federal investment in NCI-Designated Cancer Centers and
academic cancer centers will allow the cancer research community to
accelerate progress against cancer, despite challenges such as the
COVID-19 pandemic.
[This statement was submitted by Jennifer W. Pegher, Executive
Director,
Association of American Cancer Institutes.]
______
Prepared Statement of the Association of American Educators Fellows
My name is Jessica Saum and I am a special education teacher at
Stagecoach Elementary School in Cabot, Arkansas. I am the current
Stagecoach Elementary School and Cabot Public School Distict's Teacher
of the year. I teach a self-contained classroom of students grades
kindergarten through fourth grade where my students spend less than 40%
of the school day out of my classroom with their typically developing
peers. This time includes lunch, recess, activity classes, and for
certain students instructional times such as phonics, social studies,
and science.
Students with diverse needs, especially those in early childhood
special education, need more time in the general education classroom
learning prosocial behaviors and having more exposure to grade level
curriculum. In order to provide this, schools need additional funding
to ensure staffing of trained paraprofessional support for students
with moderate to severe learning disabilities as well as to fund
inclusion co-taught classroom supporting those with specific learning
disabilities and deficits in specific content areas.
When learning happens in an inclusive classroom, general education
teachers and special education teachers work together and are able to
meet the needs of all students. Carl A. Cohn, EdD, the executive
director of the California Collaborative for Educational Excellence,
said, ``It's important ... to realize that special education students
are first and foremost general education students.'' This is often not
how students with special needs are treated.
Inclusive classes look different in how they are arranged and how
they operate. Some use co-teaching with a collaborative team model
having is a special education teacher in the room all day. In other
inclusive classrooms, there is a special education teacher that
``pushes in'' to the class during specific times during the day to
teach. This allows students to minimize transitions that can be very
overwhelming, and is used in place of pulling kids out of class to a
separate room. In both of these situations, teachers are available to
teach and help all students.
This type of learning is beneficial for all students, not just for
those who are receiving special education services, having both
positive short-term and long-term effects. Studies have shown that
students with special education needs who are in inclusive classes are
absent less often and develop stronger skills in reading and math.
Additionally they also more likely to have jobs and pursue education
after high school. The same research shows that their peers benefit,
too. The typically developing students are more comfortable with and
more tolerant of differences. I have seen this in my own children as
they have formed meaningful relationships with students I teach and are
advocates even at a young age and friends to exceptional learners.
Most students than ever with special needs are expected to take the
same high stakes assessments as students without special needs. Eleven
of the thirteen students in my special class setting took the same
district and state assessments as their grade level peers in the 2020-
2021 school year. They deserve the opportunity to learn alongside
typical peers, having access to the same curriculum, with the support
from special educators to navigate appropriate prosocial behaviors and
receive modifications and accommodations to ensure success.
What we must directly address is how we can spend this much-needed
federal money. It is important to determine whom it goes to when
investing more into this often overlooked population, where the needed
training comes from, and for whom is it used for. General education
teachers need additional training provided at the state level through
professional development at their district or coop, specifically on
High Leverage Practices for Inclusion to support this data proven
practice being implement in their classrooms. There needs to be
increased funding, specifically designated for districts to hire
additional paraprofessionals and special education teachers to work
with students in the general education classroom, ensuring students are
being educated in their least restrictive environment as required
through the Individuals with Disabilities Act (IDEA). Furthermore,
there needs to be an increased emphasis nationally at the collegiate
level in teacher preparation programs on educating diverse learners in
the general education setting. Teachers are not adequately prepared to
meet the needs of exceptional learners when they enter the teaching
profession and the lack of training to ensure this has led to many
students being educated in settings more restrictive than necessary.
Teachers can and will do more when supported appropriately and when
they are properly trained. I have witnessed this first hand as a
special education teacher. When my students have general education
teachers trained to support them and confident in their abilities to
meet their unique needs, they have more growth academically, are more
socially competent, and lead happier and more successful lives at home
and in their communities. It is critical to note that lasting effects
of inclusive practices in schools extend far beyond the school setting
making children a part of their community, helping them develop a sense
of belonging and becoming better prepared for life.
Providing children with the resources to attend schools which are
committed to and prepared for inclusive practices, demonstrates the
shared commitment to having all children feel appreciated and accepted
throughout life. All children deserve to attend age appropriate regular
classrooms to the maximum extent possible receiving curriculum relevant
to their needs that will provide for their educational success. All
children benefit from cooperation, collaboration among home, among
school, among community.
Thank you for your time and consideration.
[This statement was submitted by Jessica Saum, Special Education
Teacher,
Association of American Educators Advocacy Fellow.]
______
Prepared Statement of the Association of American Medical Colleges
The Association of American Medical Colleges (AAMC) is a not-for-
profit association dedicated to transforming health through medical
education, health care, medical research, and community collaborations.
Its members are all 155 accredited U.S. and 17 accredited Canadian
medical schools; more than 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 their more than 179,000 full-time faculty members, 92,000
medical students, 140,000 resident physicians, and 60,000 graduate
students and postdoctoral researchers in the biomedical sciences.
The COVID-19 pandemic has illustrated how sustained support for the
research, education, and patient care missions of medical schools and
teaching hospitals, 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 2022, 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 $46.1 billion for the National Institutes of Health
(NIH); $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 $485 million for the
Children's Hospitals Graduate Medical Education (CHGME) program; and at
least $10 billion for the Centers for Disease Control and Prevention
(CDC). The AAMC appreciates the Subcommittee's longstanding, bipartisan
efforts to strengthen these programs. Additionally, 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.
National Institutes of Health. Congress's longstanding bipartisan
support for medical research has contributed greatly to improving the
health and well-being of all Americans, highlighted by the central role
medical research has played in combatting COVID-19. As illustrated over
the last year, 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 the bipartisan support that resulted
in the inclusion of $42.9 billion for medical research conducted and
supported by the NIH in the FY 2021 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 FY 2021, and for the emergency resources that have
advanced COVID-19 research.
In FY 2022, the AAMC joins nearly 400 partners in supporting the Ad
Hoc Group for Medical Research recommendation that Congress provide at
least $46.1 billion in program level funding for the NIH, including
funds provided through the 21st Century Cures Act for targeted
initiatives. This funding level for the foundational work at the core
of NIH's mission would continue the momentum of recent years by
enabling meaningful growth of 5% in the NIH's base budget over
biomedical inflation to help ensure stability in the nation's research
capacity long term. 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 and gender 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 the proposed Advanced Research
Projects Agency for Health (ARPA-H) within NIH as part of the
administration's $52 billion request for the NIH to ``drive
transformational health research innovation and speed medical
breakthroughs by tackling ambitious challenges requiring large-scale,
sustained, and cross-sector coordination.'' 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.
We also wish to highlight the challenges that the pandemic has
imposed on the medical research workforce and the broader research
enterprise. We continue to be concerned that, without supplemental
resources, the disruptions imposed by COVID-19 will undermine NIH's
ability to support previous investments in the existing research
workforce and new investments in life-saving research. In his recent
testimony before the subcommittee, NIH Director Francis Collins, MD,
PhD, cited the $16 billion impact of the coronavirus pandemic on
medical research progress in all disease areas, and especially on the
research workforce. We urge support for emergency funding for NIH as
outlined in the bipartisan Research Investment to Spark the Economy
(RISE) Act (H.R. 869/S.289).
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 $500 million
in funding for AHRQ in FY 2022.
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 adapted their curricula to educate our health
workforce during this public health challenge. They also dealt with the
unexpected costs of providing personal protective equipment for in-
person clinical training and switching from in-person to virtual
learning. The pandemic has underscored the need to increase and
continuously reshape our health workforce. The programs have proven
successful in recruiting, training, and supporting public health
practitioners, nurses, geriatricians, mental health providers, and
other front-line health care workers critical to addressing COVID-19.
Additionally, in coordination with HRSA, grantees have used innovative
models of care, such as telehealth, to improve patients' access to care
during the pandemic.
The COVID-19 pandemic has also highlighted the pervasive health
inequities facing minority 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 disparities, and
attract health professionals more likely to treat underserved patients.
The AAMC joins the Health Professions and Nursing Education Coalition
(HPNEC) in recommending $1.51 million for these critical workforce
programs in FY 2022.
In addition to Title VII and Title VIII, HRSA's Bureau of Health
Workforce also supports the CHGME program, which provides critical
federal graduate medical education support for children's hospitals to
train the future primary care and specialty care workforce for our
nation's children. We support $485 million for the CHGME program in FY
2022. We also encourage Congress to provide robust funding to HRSA's
Rural Residency Programs, which provides funding to develop new rural
residency programs or separately accredited rural training track
programs, to expand training opportunities in rural areas.
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 $10 billion for the CDC in FY
2022. 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 the CDC total, the AAMC supports $102.5 million for the
Racial and Ethnic Approaches to Community Health (REACH) program and
$25 million to support gun safety research.
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 Ebola 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 FY 2022 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 more than 50-year commitment
to providing eligible agricultural workers the opportunity to achieve
the American Dream for themselves and their families. As you begin work
on your fiscal year 2022 Labor-Health and Human Services-Education
appropriations bill, AFOP encourages you to build on the foundations
laid by the highly successful programs described below by adequately
funding them in the coming fiscal year: National Farmworker Jobs
Program (NFJP), United States Department of Labor (DOL) Employment and
Training Administration ($98,896,000); and Susan Harwood Training
Grants, DOL Occupational Safety and Health Administration
($10,537,000). Not only do these programs maximize the Federal
government's investment in them, they also generate for employers the
qualified and healthy workers essential to their growth. These programs
also dramatically change peoples' lives for the better, often in rural
areas, allowing them to enjoy economic success and participate more
fully in our great nation. Thank you for supporting these very
effective programs and the excellent results they bring for society's
most vulnerable.
national farmworker jobs program
NFJP is the bedrock of the nation's commitment to helping
agricultural workers upgrade their skills in and outside agriculture,
providing employers with what they increasingly say they need:
hardworking, 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 agricultural workers retain and stabilize their
current agriculture jobs, as well as enable them to participate in up-
training and enter new careers. NFJP housing assistance helps meet a
critical need for the availability and quality of agricultural worker
housing and supports better economic outcomes for workers and their
families. NFJP also facilitates the coordination of services through
the American Job Center network for agricultural workers so they may
access other services of the public workforce system.
The agricultural workers who come to NFJP seek training to secure
and excel in the in-demand jobs employers say they find challenging to
fill. In doing so, the workers establish the financial foundation that
allows them and their families to escape the chronic unemployment and
underemployment they face each year. Many NFJP participants enter
construction, welding, healthcare, and commercial truck-driving. Others
train for the solar/wind energy sector, culinary arts, and for
positions such as machinists, electrical linemen, and a variety of
careers in and outside of agriculture. To be eligible for NFJP, workers
must be low-income, depend primarily on agricultural employment, and
provide proof of American citizenship or work authorization.
Additionally, male applicants must have registered with the Selective
Service.
Agricultural workers are some of the hardest working individuals in
this country, enduring tremendous physical and financial hardships in
providing produce Americans eat every day. Yet, agricultural workers
remain among the nation's most vulnerable employees and job seekers,
facing significant barriers to work advancement, including:
--The average agricultural worker family of four earns just $20,000
per year, well below the national poverty line.
--English-language fluency is a substantial challenge for many.
--More than half the children of migratory agricultural workers drop
out of school, and, among all agricultural workers, the median
highest grade completed is 9th grade (National Agricultural
Workers Survey).
--Due to poverty and their rural locations, most agricultural workers
have extremely limited access to transportation.
Despite these barriers, NFJP continues to be one of the most
successful Federal job training programs, exceeding all DOL's goals. In
2019 alone, NFJP service organizations provided more than 17,300
agricultural workers with services, according to DOL. These NFJP
providers have served more than an estimated 170,000 agricultural
workers and their family members over the last 10 years. Funding
program this year at $98,896,000 would allow NFJP to train even more
dependable, capable workers to take on the nation's most challenging
jobs, such as those needed to rebuild the nation's infrastructure.
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 220 trainers in 30
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 492,000 agricultural workers have become certified as
trained in safety precautions, and hundreds of thousands of family
members, children, and community agencies have also received safety
training. The network collaborates with universities, community
organizations, local governments, and businesses to maximize its
unparalleled access to agricultural workers and their families. By
reaching agricultural workers with pesticide safety training, the
network's trainers offer access to other services and create a ripple
effect of positive impact--improving the quality of life for
agricultural workers and their families--which is what NFJP
organizations do best.
Thank you for supporting these worthy programs. AFOP stands ready
to assist you in any way as you proceed with your very important work.
[This statement was submitted by Daniel J. Sheehan, Executive
Director,
Association of Farmworker Opportunity Programs.]
______
Prepared Statement of the Association of Independent Research
Institutes
The Association of Independent Research Institutes (AIRI) thanks
the Subcommittee for its long-standing and bipartisan leadership in
support of the National Institutes of Health (NIH). We continue to
believe that science and innovation are essential if we are to improve
our nation's health, sustain our leadership in medical research, and
remain competitive in today's global information and innovation-based
economy. AIRI urges the Subcommittee to provide NIH with at least $46.1
billion in fiscal year (FY) 2022. 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
proposed Advanced Research Project Agency for Health (ARPA-H) can
support high-risk, high-reward research to quickly develop new cures.
AIRI urges the Subcommittee to ensure that this proposed effort
complements, and does not negatively impact, NIH's funding for
fundamental biomedical research that is critical for understanding and
addressing the public health challenges facing the United States.
AIRI is a national organization of more than 90 independent, non-
profit research institutes that perform basic and clinical research in
the biological and behavioral sciences. AIRI institutes vary in size,
with budgets ranging from a few million to hundreds of millions of
dollars. In addition, each AIRI member institution is governed by its
own independent Board of Directors, which allows our members to focus
on discovery-based research while remaining structurally nimble and
capable of adjusting their research programs to emerging areas of
inquiry. Investigators at independent research institutes consistently
exceed the success rates of the overall NIH grantee pool, and they
receive about ten percent of NIH's peer-reviewed, competitively awarded
extramural grants.
AIRI thanks the Subcommittee for providing an increase of $1.25
billion for NIH in the FY 2021 Consolidated Appropriations Act. 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 $46.1 billion for NIH in
FY 2021.
AIRI thanks the Subcommittee and Congress for providing critically
needed supplemental funding in 2020 to combat the COVID-19 pandemic.
NIH investments were critical in the record-breaking development of
multiple vaccines and improved treatments and therapeutics for COVID-
19. Independent research institutions are, by design, structurally
nimble and responsive to emerging research issues. In part because of
this, AIRI members have made significant contributions to COVID-19
research. Selected examples include:
--The Fred Hutchison Cancer Research Center's and RTI International's
role in the Accelerating COVID-19 Therapeutic Interventions and
Vaccines (ACTIV) program essential for the development of
treatments and vaccines.
--Fred Hutch's work in modeling the spread and evolution of COVID-19
and as the coordination center for the NIH-funded COVID-19
Prevention Network.
--La Jolla Institute of Immunology's pioneering work to understand T
cell responses to the infection.
--Jackson Lab's work in developing a line of ACE2 mice for
preclinical studies.
Not only is NIH research essential to advancing health, it also
plays a key economic role in communities nationwide. In FY 2020, NIH
invested $34.65 billion, or almost 80 percent of its budget, in the
biomedical research community. This investment supported more than
536,338 jobs nationwide and generated nearly $91.35 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 2021 State-By-State Update, https://
www.unitedformedicalresearch.org/wp-content/uploads/2021/03/NIHs-Role-
in-Sustaining-the-U.S.-Economy-FINAL-3.23.21.pdf.
---------------------------------------------------------------------------
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.
AIRI looks forward to working with Congress and the Biden
Administration to examine how the proposed establishment of an ARPA-H
can push the research enterprise to take on high-risk, high-reward
research efforts. If successful, an ARPA-H has the potential to convene
researchers to take on 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 new proposals do not negatively impact
these important ongoing efforts.
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 $46.1 billion in FY 2021 and reaffirming support for NIH's
current F&A and investigator salary policies 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 2022 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:
--$46.1 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
--$100 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 year and a half, 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 twelve 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 US 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).
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. and Malcolm
Ellington,
Professor, Health Disparities Research and Dean, College of Pharmacy
Xavier
University of Louisiana.]
______
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 FY22
appropriations for the U.S. Department of Health and Human Services
(HHS). ASTHO is requesting $10 billion for the Centers for Disease
Control and Prevention (CDC), $824 million for the Public Health
Emergency Preparedness Cooperative Agreement (PHEP), $149 million for
the CDC Preparedness and Response, All Other CDC Preparedness line,
$170 million for the Preventive Health and Health Services Block Grant
(Prevent Block Grant), and $250 million for the data modernization
effort at the CDC. Under the Assistant Secretary for Preparedness and
Response (ASPR), ASTHO is requesting $474 million for the Hospital
Preparedness Program (HPP) and not less than $45.6 million to sustain
the Regional Treatment Network for Ebola and Other Special Pathogens
(RTNESP) and the National Ebola Training and Education Center (NETEC).
Additionally, we are requesting $9.2 billion in discretionary funding
for the Health Resources and Services Administration (HRSA).
You are probably wondering, ``Why is governmental public health at
the table requesting more funding? Didn't Congress just provide
billions of dollars in emergency funding for you all?'' The answers are
yes and thank you. We all must recognize the sheer amount of emergency
funding required to boost our public health system and respond to the
COVID-19 pandemic. 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. All too often, after emergency supplemental
funding expires, health officials are forced to shut down programs,
allow software licenses to expire, furlough staff, and move on. While
there are billions of emergency supplemental dollars in the system
right now--that we are immensely grateful for--we anticipate that,
without a change of course, there will be an enormous funding cliff in
two to three years. Meanwhile, we all know that communities of color
are disproportionately impacted by underinvestment on all public health
fronts, whether we are discussing maternal morbidity and mortality,
infant mortality, the prevalence of chronic diseases, substance use and
misuse, behavioral and mental health, the HIV epidemic, and most
strikingly, overall life expectancy. We have an opportunity to make
things better for the American people, especially for those who need it
most. This committee and Congress can ensure we have sustained,
predictable, and increased funding for all of public health, which
translates into better lives for those we serve.
ASTHO is the national nonprofit organization representing the
public health agencies of the United States, the U.S. territories and
freely associated states, and the District of Columbia. ASTHO members,
the chief health officials of these jurisdictions, are dedicated to
ensuring excellence in public health practice. The mission of our
nation's governmental health agencies is to protect and improve the
health of the population, everywhere, every day. Our members' mission
is to provide the leadership, expertise, information, and tools to
assure conditions in which all residents can be healthy. In short:
Keeping people safe.
America's state and territorial public health departments work in
strong partnership with CDC toward this goal. For this essential task,
we request $10 billion in overall funding for CDC. 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. Through this
partnership with CDC, state and territorial health agencies work across
the country to prevent avoidable diseases, promote healthy communities,
protect the public's health, and ensure the vibrance and security of
our economy. These resources also support disease-neutral
infrastructure such as data and information technology systems,
workforce development, community partnership building, and
administrative preparedness. We continue to learn how far behind we are
as a country when it comes to our ability to accurately track diseases
or even transmit data efficiently and accurately to a central location.
ASTHO is thankful for the current investment in our public health
systems, but dependable and appropriate financing is essential to keep
our country ahead of the curve.
Public health preparedness requires support at the federal level
and implementation by state, territorial, and local jurisdictions.
Recognizing this, ASTHO requests $824 million for PHEP at CDC.
America's public health preparedness outlays have operated in a
punctuated equilibrium. We make leaps forward after emergencies such as
September 11, Ebola, Zika, and measles outbreaks, and then are lulled
into periods of stasis for far too long. PHEP requires ongoing and
increased funding to ensure that lessons and improvements from the
COVID-19 response are not lost. In close partnership with the PHEP is
the Hospital Preparedness Program (HPP) at ASPR, for which ASTHO
requests $474 million. As the only source of federal funding that
supports regional healthcare system preparedness, HPP promotes a
sustained national focus to improve patient outcomes, minimizes the
need for supplemental state and federal resources during emergencies,
and enables rapid recovery. Now more than ever, we clearly understand
the importance of public health and healthcare preparedness programs
working collaboratively and with proper resources. We are also
requesting that Congress provide no less than $49.5 million to sustain
the National Emerging Special Pathogen Training and Education Center
and the 10 existing regional Ebola and other special pathogen treatment
centers under ASPR. The investment made in this system over five years
ago has proven its importance in providing specialty treatment,
training, and national-level expertise during the COVID-19 response.
This network is a valuable front-line tool in protecting our country.
Preventing disease in the first place is the most economical use of
our public funds when it comes to health spending. ASTHO's members
strive to implement locally tailored, innovative programs that not only
prevent disease and disability but support wellness as we work toward
national health priorities. For this, ASTHO requests $170 million for
the Prevent Block Grant. Programs funded by the Prevent Block Grant
cannot be adequately supported or expanded through other funding
mechanisms. The success of the Prevent Block Grant is achieved by using
evidence-based methods and interventions, reducing risk factors,
leveraging other funds, and continuing to monitor and reevaluate funded
programs.
ASTHO appreciates this committee's ongoing support of CDC's data
modernization initiative. Public health is singlehandedly keeping the
fax industry alive, and we must leap forward. We applaud Congress's
investment and down payment to date ($600 million through FY21 and FY21
funding and the CARES Act) and the inclusion of language authorizing
activities to improve the public health data systems at CDC in the
Consolidated Appropriations Act for FY21. We respectfully request the
Subcommittee continue to provide sustained annual funding of at least
$250 million for the public health Data Modernization Initiative at
CDC.
ASTHO is also encouraged by the Administration's plan to end the
HIV epidemic and address social determinants of health in America.
State and territorial health officials look forward to working with
federal and local partners across the country to bring effective
strategies to scale. State, territorial, local, and tribal
jurisdictions, community-based organizations, and healthcare partners
must have the resources necessary to enhance and deliver these
evidence-based public health interventions.
While the pandemic is at the forefront of our minds, we have never
fully addressed the ongoing crisis in our country caused by substance
misuse, addiction, and drug overdoses. ASTHO is appreciative of
previous investments in public health to address this crisis. We
respectfully request Congress to sustain activities and continue the
response to the opioid epidemic and substance abuse and misuse
disorders more broadly.
CDC is not the only federal agency that strives to improve the
public's health in states and territories. ASTHO is requesting $9.2
billion for discretionary funding for HRSA. HRSA administers programs
that focus on improving care for tens of millions of Americans who are
medically underserved or face barriers to needed care by strengthening
the health workforce.
As you look to the FY22 discretionary appropriations bills, we
strongly urge you to build a base funding for public health--through
CDC, ASPR, and HRSA--that is sustainable and predictable. Thank you so
much for your time and consideration of our request. We stand ready to
continue working toward optimal health for all.
[This statement was submitted by Michael Fraser, PhD, MS, CAE,
FCPP, Chief Executive Officer, Association of State and Territorial
Health Officials.]
______
Prepared Statement of the Association of University Programs in
Occupational Health and Safety
On behalf of the Association of University Programs in Occupational
Health and Safety (AUPOHS), we respectfully request that the Fiscal
Year 2022 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 $4,000,000 increase over
the FY21 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 2019, a worker died
every 99 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 marked or guarded roof edge;
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 we encounter at work, or heart disease from
our chronically stressful work environments. In addition to work-
related deaths, we also have a high burden of non-fatal 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 of 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 this past year, 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 well-being. 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 this pandemic, NIOSH has
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 18 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 also focuses research and outreach efforts on the nation's
most dangerous worksites that often impact lives in more rural parts of
America. The Centers for AgFF were established by Congress in 1990 (PL
101-517) in response to evidence that agricultural, forestry, and
fishing workers suffer substantially higher rates of occupational
injury and illness than other nation's workers. Agricultural workers
are more than six times more likely to die on the job than the average
worker, averaging 540 fatalities per year, and more than 1 in 100
workers incur nonfatal injuries resulting in lost workdays each year.
Our food security depends on a healthy and safe agricultural
workforce--an essential sector that has been hit particularly hard
during the pandemic. Today, the NIOSH AgFF initiative includes ten
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 these vital production
sectors. 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, the developed of rollover protective structures (ROPS or roll
bars) and seatbelts on tractors were shown to prevent 99% of overturn-
related deaths. Partnering with fishing communities, the AgFFs
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. In addition, state and federal OSHA personnel
rely on NIOSH research to develop evidence-based standards for
protecting agricultural workers and would not be able to fulfill their
mission without the AgFF program.
NIOSH also supports six TWH Centers of Excellence that conduct
multidisciplinary research and test practical solutions to emerging
challenges that impact the safety, health, well-being, 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.
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 Bennett Katherine, MD FACP deg.
Prepared Statement of Katherine Bennett, MD FACP
As the Assistant Director for Education of the Northwest Geriatrics
Workforce Enhancement Center (NW GWEC) at the University of Washington
(UW), immediate past president of the National Association for
Geriatric Education (NAGE), and a current Geriatrics Academic Career
Award recipient, I am pleased to submit this statement for the record
on behalf of myself, the NW GWEC, and NAGE recommending appropriations
of at least $105.7 million in Fiscal Year 2022 to support geriatrics
workforce training under the Geriatrics Workforce Enhancement Program
(GWEP) and the Geriatrics Academic Career Award (GACA) program.
Administered by the Health Resources and Services Administration
(HRSA), both programs reach rural and underserved populations and
address health inequities. We thank you for your past extensive support
of these programs. An appropriation at this level will build upon these
programs that are vital to the health and well-being of our nation's
older adults and those who provide care for them.
We all know that there are many older people in our homes,
communities, and states who need the care of well-trained health
professionals. It turns out that we have much of the know-how,
expertise, curricula, and teachers to offer this training! What we need
from you is the funding to support the dissemination of this expertise
to more health care providers and systems who treat older patients. The
GWEP and the GACA programs are the only federally funded programs
designed to increase the number of health professionals with the skills
and training to provide high quality, patient-centered, equitable,
cost-saving care for older adults. This training is critical to
addressing the suboptimal care that is so frequent and widespread, and
something I see the devastating impacts of each day--older adults who
are prescribed dozens of medications that are contributing to falls and
cognitive impairment; advanced dementia that has gone undiagnosed for
years; and life-altering injuries from falls that could have been
prevented.
Suboptimal healthcare occurs not because primary care teams do not
care but because most providers in practice have received insufficient
and more often no training whatsoever in the core principles of high-
quality care for older adults. In a just society, we aspire to provide
adequate health care at every age and stage of life. The care of older
adults is a unique skill set, largely due to age-related changes to the
entire body, the simultaneous presence of multiple chronic diseases,
and conditions that are unique to older adults--this care really cannot
be done well without specific training. The GWEP and the GACA programs
seek to change the present reality through quality improvement and
education initiatives conducted in partnership with primary care
practices and community agencies, and by training future leaders in
geriatrics care transformation.
There are currently 48 GWEPs, located in 35 states and 2
territories, that are working to rapidly transform and expand the
health care of older adults. The current appropriation level makes it
impossible to have at least one GWEP in every state or for current
GWEPs to have adequate funds to do an expanding body of work. This
increased funding is urgently needed so that these vital programs can
equitably reach all areas of the country and effectively respond to the
rapid growth in number and increasing health complexity of older
adults. These programs are integral to the training, support, and
expansion of the eldercare workforce and long-term services and
supports infrastructure.
The 48 current GWEPs have tremendous impact on their regions.
During 2019-2020, 56,603 health professions trainees participated in
GWEP-led education activities, and 290,161 faculty and providers
attended 2,069 different continuing education events, which included
906 events focused on Alzheimer's disease and other dementias. GWEPs
partner with health systems (including federally qualified health
centers and Veteran's Affairs Medical Centers) and community-based
organizations to have the greatest impact and optimize the community/
health care linkages that are essential to older adults and their
caregivers. Every GWEP is focused on meeting the needs of rural and/or
underserved populations, and GWEPs play an integral role in reducing
health inequities. For example, a GWEP based on the South Side of
Chicago addressed health disparities for African Americans with
dementia by partnering with faith-based community leaders, and another
GWEP partnered with FQHCs to create and distribute multilingual COVID-
19 education materials and increase behavioral health capacity.
Over the past two years, GWEPs have joined forces with the
Institute for Healthcare Improvement and The John A. Hartford
Foundation to drive spread of the Age-Friendly Health System
initiative. This initiative aims to align healthcare with an older
adult's goals by eliciting what matters most to them, ensuring that
medications regimens minimize the risk of harm, optimizing mood and
cognition, and guiding them to move safely and prevent falls. This type
of evidence-based care not only improves outcomes but reduces
healthcare costs. To date, GWEPs are partnering on this initiative with
302 health care delivery sites, 42% of which are in medically
underserved communities and 45% designated as primary care. Nearly
6,000 different activities focused on Age-Friendly Health System
transformation have reached 205,322 individuals.
The COVID-19 pandemic highlighted the fragility of the network of
supports that help keep older adults healthy and thriving in the
community. The GWEPs quickly pivoted to redirect the training of the
healthcare workforce in the face of the obstacles resulting from the
pandemic while continuing to meet the needs of older adults and their
caregivers. For example, our GWEP partnered with Area Agencies on Aging
to provide electronic tablets (along with training and support) and
telehealth stations to keep older adults connected online to essential
primary care services. We also quickly shifted our training to an
entirely virtual format and focused on what interprofessional teams
need to optimally care for older adults during the pandemic. Training
sessions covered COVID-19 in older adults, assessing cognition via
telehealth, addressing goals of care during the pandemic, and screening
for falls via telehealth.
Around the country, GWEPs have done nothing short of amazing work
during COVID-19 by partnering with primary care and community agencies
to meet the medical, behavioral health, social, and basic needs of
older adults and their caregivers. GWEPs addressed social isolation via
virtual connection and phone outreach, trained teams of healthcare
providers in age-friendly telehealth, provided virtual trainings on key
care principles for older adults, delivered virtual caregiver support,
and partnered on rapid vaccine rollout to the most vulnerable in the
community, to name just a few examples. Taken together, the GWEPs
delivered 400 unique training sessions that addressed COVID-19 related
issues and reached over 54,000 individuals. The pandemic demonstrated
the tremendous ability of GWEPs to adapt to unforeseen circumstances
and remain focused on transforming the care of older adults to be age-
friendly and preparing the healthcare workforce to meet the most
pressing needs of older adults and their caregivers.
The Northwest Geriatrics Workforce Enhancement Center (NW GWEC),
UW's GWEP, was established in 2015 and provides training and programs
that enhance the lives of older adults and their caregivers in
Washington and throughout the region. Our programs include Project
ECHO-Geriatrics, a Primary Care Liaison Program based at the Area
Agencies on Aging (AAA), a AAA Practicum for health professions
trainees, and the Geriatrics Healthcare Lecture Series. Here are some
examples of our reach.
--Project ECHO-Geriatrics: NW GWEC's Project ECHO--Geriatrics, or the
Extension for Community Healthcare Outcomes, which is based on
the evidence-based ECHO model that trains and mentors current
and future primary care providers to provide specialty care to
their own patients and reduce health disparities. Sessions
involve virtual mentoring sessions with teaching and
consultations with an interprofessional geriatrics specialist
panel. Since 2016, we have held over 60 monthly sessions with
over 1,000 unique participants. Sessions focus on key primary
care topics such as dementia, fall prevention, and depression.
Dr. Braun, a faculty member at the Providence St. Peter Family
Medicine Residency Program with sites in Olympia and Chehalis,
WA said, ``The program not only helps achieve our hours of
required geriatrics training but has transformed the care I see
provided by our residents in clinic and across healthcare
settings.''
--Primary Care Liaison Program: Our GWEP partnered with several Area
Agencies on Aging in WA to create a Primary Care Liaison (PCL)
program to connect primary care clinics to AAAs through
outreach, engagement, and education as well as facilitating
referrals. This program has increased primary care referrals to
participating AAAs by over 4-fold.
The GACA program aims to train the next generation of leaders in
geriatrics. There are currently 26 GACA awardees across 16 states
representing a range of health professions disciplines (e.g.,
physicians, social workers, dentists, physical therapists). GACA awards
support career development of future educators, leaders, and innovators
in geriatrics and awardees also train interprofessional teams to
provide age-friendly care. For example, as a current GACA awardee, I
partnered with my local Area Agency on Aging (AAA) to create a new
Project ECHO specifically to train AAA case managers in age-friendly
care. The curriculum covers dementia, fall prevention, depression, and
medication safety, and each ECHO session includes consultation on
complex patients. GACA awardees throughout the country are reshaping
the care of older adults through innovative projects such as
redesigning airports to be age-friendly, reducing unsafe opioid
prescribing in nursing homes, and integrating (oft neglected) oral
health into routine primary care.
Although GWEPs are preparing the healthcare workforce to meet the
needs of older adults and their caregivers, not all states are
benefiting: Only 35 states and two territories have a GWEP, and only 16
states have a GACA recipient. Moreover, since renewal of the GWEP
program in 2019, annual funding per GWEP has been reduced by $100,000
compared to the initial award period (2015-2019). An increase in
appropriation is essential to ensure that every state has at least one
GWEP and that GWEP sites can expand their work. Additionally, increased
appropriations can ensure that there are more GACA awardees to meet the
nation's current and future needs for transformative leaders in
geriatric medicine.
In summary, GWEPs and GACAs are essential to ensure that the
healthcare workforce in this country can meet the needs of older
adults. Through our GWEPs, we have developed the knowledge and
expertise to train interprofessional health care teams. Through our
many partnerships and training activities, we have proved integral to
the training and care delivery of the healthcare workforce including
those in the long-term services and supports infrastructure as well as
eldercare workforce infrastructure. I thank you for your consideration
of this request for appropriations and am deeply grateful for your past
support of these programs that are revolutionizing healthcare of older
adults and their caregivers to be age-friendly, high-quality,
equitable, cost-saving, and aligned with their personal goals and
preferences.
______
Prepared Statement of the Beyond AIDS Foundation
Dear Committee Members,
I am writing in support of a FY 2022 budget request for Department
of Health and Human Services (DHHS) to develop a national strategy and
implementation plan for the prevention, control and treatment of Herpes
Simplex Virus, Types 1 and 2 infections.
It is critical for public health and disease control to address
Herpes Simplex Virus (HSV), a lifetime infection that impacts nearly
half of Black women in our country, disproportionately impacts LGBTQ
populations, and is an important driver of the HIV epidemic.
Approximately 40% of new cases of HIV infection have been attributed to
chronic HSV infection. HSV also kills approximately 1,000 infants
annually as a result of neonatal herpes and injures thousands more.
Despite this largely preventable mortality and morbidity, neonatal
herpes is currently not even a national reportable condition.
Additionally, there is a growing body of research indicating that HSV
may be a contributing factor to Alzheimer's Disease, Encephalitis,
Bell's palsy, among other neurodegenerative diseases.
There is currently no organized national strategy to address HSV.
It is often not tracked nor routinely tested for during clinical and
screening visits. And the majority of spread is via asymptomatic
carriers who are in most cases unaware of their infection status. It is
estimated that over 60 million Americans have genital infections with
either HSV-2 or HSV-1, making it among the most prevalent STIs in the
US. We can and should be doing more to stop the spread and provide
better treatment to the nearly 1 in 3 Americans with this chronic
condition.
For the past two decades, I have served as the volunteer Medical
Advisor for the largest in-person herpes support (HELP) groups in the
country (Los Angeles and Orange Counties, San Diego), and since the
COVID-19 pandemic, the online SoCal HELP group. I have been privy to
observe the negative outcome of having non-existent federal HSV
policies and programs. They include severe genital pain syndromes as
well as bouts of depression, anxiety, shame, and loss of self esteem
accompanying these infections. As the former Director of the largest
domestic STD Program (Los Angeles County) in the US for over a decade,
I was and am currently acutely aware of the shortcomings of our HSV
policies, planning and services, and the great need to change our
approach and address this problem.
If we prioritize women's and maternal health, the health of Black,
Hispanic, LGBTQ, indigenous and other at-risk communities, we must
prioritize Herpes Simplex Virus treatment and prevention. If we
prioritize mental health, biomedical research for incurable diseases
such as Alzheimer's or HIV, and dismantling systemic racism in
healthcare, we must also prioritize Herpes Simplex Virus control.
Addressing HSV addresses all of these national priorities and can
improve the health and quality of life, and reduce the economic burden
for millions of Americans.
Sincerely.
[This statement was submitted by Gary A. Richwald, MD, MPH,
President,
Beyond AIDS Foundation.]
______
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 2022. Key
CDC programmatic priorities of the Coalition and our member health
departments include violence prevention, immunization, public health
preparedness, epidemiology and laboratory capacity, opioid overdose
prevention, and the public health data modernization initiative.
BCHC is comprised of health officials leading 30 of the nation's
largest metropolitan health departments, who together serve nearly 62
million--or one in five--Americans. Our members work every day to keep
their communities as healthy and safe as possible. We thank you for
your continued leadership and support for our nation's public health
workforce and systems during the ongoing COVID-19 pandemic.
As the Subcommittee members recognize, federal funding for CDC and
the programs that support local and state public health departments
have remained largely stagnant. Additional investments through
sustained annual funding is necessary to build public health capacity
for the next pandemic, as well as the everyday population health
programs.
national center for immunization and respiratory diseases
National Immunization Program
We respectfully request $1.1 billion in FY2022 for the National
Immunization Program. The CDC Immunization Program funds 50 states, six
large, BCHC member cities (Chicago, Houston, New York City,
Philadelphia, San Antonio, and Washington, D.C.), and eight territories
for vaccine purchase and immunization program operations. In addition
to the challenges of the COVID-19 pandemic and continuing disease
outbreaks, recent growth of electronic health records and compliance
with associated regulations, new vaccines and school requirements have
increased the complexity of vaccine management. Additional base funding
is needed for each grantee to sustain improvements supported by
emergency funding and maintain sound and efficient immunization
infrastructure. We also ask that the Committee encourage CDC to be as
flexible as possible in coordinating funding and guidance across
immunization program streams as we do COVID vaccinations while still
also carrying out routine immunizations.
national center for emerging and zoonotic infectious disease
Epidemiology and Lab Capacity
We respectfully request $500 million in FY2022 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 (Chicago, Houston, Los Angeles County, New
York City, Philadelphia, and Washington, D.C.), Puerto Rico, and the
Republic of Palau. ELC grants strengthen local and state capacity to
contain infectious disease threats by detecting, tracking and
responding in a timely manner, as well as maintaining core capacity as
the nation's public health eyes and ears on the ground. Increased
funding will help build the epidemiology workforce, allowing state and
local health departments to begin to move towards establishing a
minimum epidemiology workforce; to promote and offer training for state
and local epidemiologists; and to monitor needs in state- and/or local-
based epidemiology capacity. ELC dollars sent to the states should be
tracked through existing CDC reporting structures and shared publicly
to ensure funds are also supporting big city epidemiology activities.
public health scientific services
Public Health Data Modernization Initiative (DMI)
We respectfully request $250 million in FY2022 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.
public health workforce
We respectfully request $160 million in FY2022 for the public
health workforce and career development programs as proposed in the
President's budget. 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 the public
health workforce, as well as attract and retain diverse candidates with
diverse 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 $400 million in FY2022 for a new Public
Health Infrastructure and Capacity investment as proposed in the
President's budget request. 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 public health. These capabilities include:
public health assessment; preparedness and response; policy development
and support; communications; community partnership development;
organizational competencies; accountability; and equity. Governmental
public health infrastructure requires sustained investments over time
and we believe this is an important start. This investment is critical
to ensuring that our governmental public health system is prepared for
the next pandemic as well as to strengthen the health of our
communities every day.
national center for injury prevention and control
Opioid Overdose Prevention and Surveillance
We respectfully request $713 million in FY2022 for Opioid Overdose
Prevention and Surveillance in line with the President's request. Many
health departments were forced to curtail opioid and other substance
use disorder services during the pandemic. Unfortunately, overdose
numbers are increasing in many communities, erasing progress of recent
years. Previously, programs that connected with people in hospital
emergency departments after an overdose had seen successful outcomes in
steering people toward syringe services programs and treatment
programs. However, these programs rely on in person interactions that
have been scaled back during the pandemic. Funding is needed in local
communities to ensure that substance use disorder prevention continues
to stem the tide of overdose and death. We also encourage the Committee
to include directive language to insure these dollars reach the local
level in those communities that are not directly funded, as well as
have CDC and the Office of the Assistant Secretary of Health at the
Department of Health and Human Services better track and share publicly
state expenditures.
Gun Violence Prevention Research
We respectfully request $25 million in FY2022 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. Despite
initial funding in FY 2021 to research key issues around firearm
violence, significant gaps remain in our knowledge about the problem
and ways to 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
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 effective, targeted programs.
Additional funds would be used to provide grants to conduct research
into the root causes and prevention of gun violence focusing on those
questions with the greatest potential for public health impact. The
goal of this research is to stem the continued rise of firearm violence
across the country to make our communities safer.
Community Based Violence Intervention Initiative
We respectfully request $100 million in FY2022 for a new 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. 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. Communities can
be made safer when we understand the events that have led to present
conditions and act on this knowledge by implementing policies and
practices that address the root causes of violence. 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 FY2022 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% 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 and stable base funding for years to rebuild
and improve. We also encourage the committee to include directive
language to insure these dollars reach the local level in those
communities that are not directly funded, as well as have CDC and the
Office of the Assistant Secretary of Health at the Department of Health
and Human Services 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 FY2022 for the Social
Determinants of Health (SDOH) program in line with the President's
request. CDC's SDOH program was initially funded in FY2021 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 that contribute
to high health care costs and preventable inequities in health
outcomes.
Office of Smoking and Health (OSH)
We respectfully request $310 million in FY2022 for the Office of
Smoking and Health (OSH). Tobacco use has long been the leading
preventable cause of death in the United States. Each year, it kills
more than 480,000 Americans and is responsible for approximately $170
billion in health care costs. OSH has a vital role to play in
addressing this serious public health problem. It provides grants to
states and territories to support tobacco prevention and cessation,
runs a highly successful national media campaign, conducts research and
surveillance on tobacco use, and develops best practices for reducing
it. Additional resources will allow OSH to address the alarmingly high
rates of youth e-cigarette in addition to other forms of tobacco.
______
Prepared Statement of the Campaign for Tobacco-Free Kids
I am Matthew Myers, President of the Campaign for Tobacco-Free
Kids. I am submitting this written testimony for the record to urge the
subcommittee to increase funding by $72.5 million for the Office on
Smoking and Health (OSH) at the Centers for Disease Control and
Prevention (CDC). By providing OSH with a fiscal year 2022 funding
level of $310 million, CDC will be able to more effectively address
high levels of youth e-cigarette use, expand its highly effective Tips
from Former Smokers public education campaign, and aggressively address
the role that tobacco use plays in health disparities by increasing its
efforts to assist populations and regions of the country with
disproportionately high rates of tobacco use and tobacco-related
disease and premature death. Helping tobacco users to quit is of
particular importance at this time given that cigarette smoking
increases the risk of severe illness from COVID-19.\1\
---------------------------------------------------------------------------
\1\ CDC, ``People with Certain Medical Conditions,'' accessed April
28, 2021, https://www.cdc.gov/coronavirus/2019-ncov/need-extra-
precautions/people-with-medical-conditions.html.
---------------------------------------------------------------------------
Tobacco use remains the leading cause of preventable disease and
death in the United States. More than 480,000 Americans die from
tobacco use each year, and over 16 million Americans are currently
living with a tobacco-caused disease.\2\ Thirty-two percent of heart
disease deaths, 30 percent of all cancer deaths, 87 percent of lung
cancer deaths, and nearly 80 percent of all chronic obstructive
pulmonary disease (COPD) deaths stem from tobacco use.\3\ Smoking
shortens the life of a smoker by more than a decade.\4\
---------------------------------------------------------------------------
\2\ U.S. Department of Health and Human Services (HHS), The Health
Consequences of Smoking--50 Years of Progress: A Report of the Surgeon
General, 2014, http://www.surgeongeneral.gov/library/reports/50-years-
ofprogress/.
\3\ HHS, The Health Consequences of Smoking--50 Years of Progress:
A Report of the Surgeon General, 2014; ``Centers for Disease Control
and Prevention (CDC) Vital Signs, Cancer and Tobacco Use, Tobacco Use
Causes Many Cancers,'' November 2016. https://www.cdc.gov/vitalsigns/
pdf/2016-11-vitalsigns.pdf.
\4\ HHS, The Health Consequences of Smoking--50 Years of Progress:
A Report of the Surgeon General, 2014.
---------------------------------------------------------------------------
Funding for CDC's Office on Smoking and Health remains modest when
compared to the estimated $226 billion in annual health care costs
attributable to tobacco use.\5\ Even with the funding increases it has
received over the past two years, the Office on Smoking and Health's
resources remain stretched too thin. OSH needs additional resources to
address an epidemic in youth use of e-cigarettes while continuing to
reduce other forms of tobacco use, especially among populations
disproportionately harmed by tobacco products.
---------------------------------------------------------------------------
\5\ Xu, X et al., ``Annual Healthcare Spending Attributable to
Cigarette Smoking in 2014,'' American Journal of Preventive Medicine,
2021.
---------------------------------------------------------------------------
High levels of youth e-cigarette use is threatening to undermine
decades of progress in reducing youth tobacco use. E-cigarettes have
been the most popular tobacco product used by kids since 2014.\6\ These
products come in a wide array of flavors that attract youth and often
deliver high levels of nicotine.\7\ In 2020, 3.6 million youth were
current users of e-cigarettes, including nearly 1 in 5 high school
students.\8\ Alarmingly, 38.9 percent of all high school e-cigarette
users used e-cigarettes for 20 days or more a month, an indicator of
addiction.\9\ In addition to exposing users to nicotine and other
harmful and potentially harmful substances, research shows that e-
cigarette use increases the risk of smoking cigarettes.\10\
---------------------------------------------------------------------------
\6\ Wang, TW, et al., ``E-cigarette Use Among Middle and High
School Students--United States, 2020,'' MMWR, Volume 69, September 9,
2020, https://www.cdc.gov/mmwr/volumes/69/wr/pdfs/mm6937e1-H.pdf;
Gentzke, A., et al., ``Vital Signs: Tobacco Product Use Among Middle
and High School Students--United States, 2011-2018, MMWR, Vol. 68, No.
6, February 2019. https://www.cdc.gov/mmwr/volumes/68/wr/pdfs/mm6806e1-
H.pdf.
\7\ Office of the Surgeon General, ``Surgeon General's Advisory on
E-Cigarette Use Among Youth,'' December 18, 2018, https://e-
cigarettes.surgeongeneral.gov/documents/surgeon-generals-advisory-on-e-
cigarette-use-among-youth-2018.pdf.
\8\ Wang, TW, et al., ``E-cigarette Use Among Middle and High
School Students--United States, 2020,'' MMWR, Volume 69, September 9,
2020, https://www.cdc.gov/mmwr/volumes/69/wr/pdfs/mm6937e1-H.pdf.
\9\ Wang, TW, et al., ``E-cigarette Use Among Middle and High
School Students--United States, 2020,'' MMWR, Volume 69, September 9,
2020, https://www.cdc.gov/mmwr/volumes/69/wr/pdfs/mm6937e1-H.pdf.
\10\ HHS, E-Cigarette Use Among Youth and Young Adults. A Report of
the Surgeon General. Atlanta, GA: U.S. Department of Health and Human
Services, Centers for Disease Control and Prevention, National Center
for Chronic Disease Prevention and Health Promotion, Office on Smoking
and Health, 2016; Barrington-Trimis, JL, et al., ``E-Cigarettes and
Future Cigarette Use,'' Pediatrics, 138(1), published online July 2016;
National Academies of Sciences, Engineering, and Medicine. 2018. Public
health consequences of e-cigarettes. Washington, DC: The National
Academies Press. http://nationalacademies.org/hmd/Reports/2018/public-
health-consequences-of-e-cigarettes.aspx. Berry, KM, et al.,
``Association of Electronic Cigarette Use with Subsequent Initiation of
Tobacco Cigarettes in US Youths,'' JAMA Network Open, 2(2), published
online February 1, 2019;.
---------------------------------------------------------------------------
The CDC's Office on Smoking and Health has a critical role to play
in addressing the youth e-cigarette epidemic. The agency has extensive
experience working with state and local health departments and the
capacity to identify and implement effective prevention strategies
designed specifically towards youth. An increase in funds would allow
CDC to provide more resources to state and local health departments;
educate students, parents and their communities about the risks of
youth e-cigarette use; and develop and implement other strategies to
protect kids.
In addition to the youth e-cigarette epidemic, there remains a
great need to help adult tobacco users who want to quit. The vast
majority of adult smokers started as youth, want to quit and wish they
had never started.\11\ The CDC's national media campaign, Tips from
Former Smokers (Tips), has proven to be highly successful at helping
smokers quit. The campaign features former smokers discussing the harsh
realities of living with a disease caused by smoking and how current
smokers can access evidence-based resources to assist them in quitting.
Between 2012 and 2018, the campaign motivated over 16.4 million smokers
to make a quit attempt and helped over one million smokers to
successfully quit for good.\12\ A recent cost-effectiveness analysis
found that over the same timeframe, Tips helped prevent 129,100
smoking-related deaths and saved an estimated $7.3 billion in smoking-
related health care costs.\13\
---------------------------------------------------------------------------
\11\ U.S. Department of Health and Human Services (HHS), The Health
Consequences of Smoking--50 Years of Progress: A Report of the Surgeon
General, 2014; Babb, S., et al., ``Quitting Smoking Among Adults--
United States, 2000-2015,'' MMWR 65(52), January 6, 2017;Nayak, P., et
al., ``Regretting Ever Starting to Smoke: Results from a 2014 National
Survey,'' International Journal of Environmental Research and Public
Health, 2017; O'Connor, Richard J., et al., ``Exploring relationships
among experience of regret, delay discounting, and worries about future
effects of smoking among current smokers.'' Substance Use & Misuse 51,
no. 9 (2016).
\12\ Murphy-Hoefer R, Davis KC, King BA, Beistle D, Rodes R,
Graffunder C. Association between the Tips From Former Smokers Campaign
and Smoking Cessation Among Adults, United States, 2012-2018.
Preventing Chronic Disease, 2020.
\13\ Shrestha SS, est al., ``Cost Effectiveness of the Tips From
Former Smokers Campaign--US, 2012-2018. American Journal of Preventive
Medicine, December 2020.
---------------------------------------------------------------------------
The Tips campaign has been enormously successful despite being on
air for only part of the year. In 2020, the campaign ran for 28 weeks.
The 2014 Surgeon General's Report, The Health Consequences of Smoking-
50 Years of Progress, said that media campaigns like Tips would ideally
run 12 months a year.\14\ With additional funding, the CDC could extend
the number of weeks the campaign is on the air as well as the frequency
with which the ads are run. Research has demonstrated that increased
exposure to Tips ads leads to increases in intentions to quit and quit
attempts.\15\
---------------------------------------------------------------------------
\14\ U.S. Department of Health and Human Services (HHS), The Health
Consequences of Smoking--50 Years of Progress: A Report of the Surgeon
General, 2014, http://www.surgeongeneral.gov/library/reports/50-years-
ofprogress/.
\15\ Davis, Kevin C., et al. ``Association Between Media Doses of
the Tips From Former Smokers Campaign and Cessation Behaviors and
Intentions to Quit Among Cigarette Smokers, 2012-2015.'' Health
Education & Behavior (2017).
---------------------------------------------------------------------------
Tobacco use plays a significant role in health disparities. Despite
the progress that has been made in reducing tobacco use, certain
populations and regions of the country face disproportionately high
rates of tobacco use and tobacco-related disease and premature death.
For example, Americans with lower levels of education and income,
American Indians and Alaska Natives, lesbian, gay and bisexual adults,
and adults with a mental illness all smoke at significantly higher
rates than other Americans.\16\ Despite initiating smoking later in
life than whites, Black Americans suffer from significantly higher
rates of diseases and death caused by smoking.\17\
---------------------------------------------------------------------------
\16\ Cornelius ME, Wang TW, Jamal A, Loretan CG, Neff LJ. Tobacco
Product Use Among Adults--United States, 2019. MMWR Morb Mortal Wkly
Rep 2020;69:1736-1742. DOI: http://dx.doi.org/10.15585/mmwr.mm6946a4;
Substance Abuse and Mental Health Services Administration (SAMHSA),
HHS, Results from the 2019 National Survey on Drug Use and Health,
NSDUH: Detailed Tables, 2019, https://www.samhsa.gov/data/report/2019-
nsduh-detailed-tables.
\17\ Roberts, ME, et al., ``Understanding tobacco use onset among
African Americans,'' Nicotine & Tobacco Research, 18(S1): S49-S56,
2016; Alexander, LA, et al., ``Why we must continue to investigate
menthol's role in the African American smoking paradox,'' Nicotine &
Tobacco Research, 18(S1): S91-S101, 2016; CDC, ``Quitting Smoking Among
Adults-United States, 2000-2015,'' MMWR, 65(52): 1457-1464, January 6,
2017, https://www.cdc.gov/mmwr/volumes/65/wr/pdfs/mm6552a1.pdf; HHS,
``Tobacco Use Among US Racial/Ethnic Minority Groups-African Americans,
American Indians and Alaskan Natives, Asian Americans and Pacific
Islanders, and Hispanics: A Report of the Surgeon General,'' 1998,
http://www.cdc.gov/tobacco/data_statistics/sgr/1998/complete_report/
pdfs/complete_report.pdf.
---------------------------------------------------------------------------
With additional funding, CDC could provide targeted assistance to
groups disproportionately harmed by tobacco use. By collaborating with
state and local health departments and community organizations, CDC
could implement prevention and cessation programs tailored to resonate
with and serve specific groups.
We urge the subcommittee to increase funding for CDC's Office on
Smoking and Health from the $237.5 million it received in fiscal year
2021 to $310 million in fiscal year 2022. An additional $72.5 million
would provide CDC with the resources it needs to increase funding to
states and take other steps to address the epidemic of youth e-
cigarette use, expand the highly successful Tips from Former Smokers
media campaign, and provide targeted assistance to groups
disproportionately harmed by tobacco use.
We appreciate the opportunity to highlight the important work of
CDC's Office on Smoking and Health and the need to increase its funding
to $310 million in fiscal year 2022.
[This statement was submitted by Matthew L. Myers, President,
Campaign for Tobacco-Free Kids.]
______
Prepared Statement of the Caregiver Action Network
On behalf of Caregiver Action Network (CAN), I am testifying in
support of the Care Corps program funded through HHS' Administration
for Community Living (ACL). We request doubling the appropriation for
Care Corps from $4 million in FY 2021 to $8 million in FY 2022.
Care Corps is an innovative Federally funded grant program that was
created in FY 2019 with a $5 million appropriation, subsequently
receiving $4 million in FY 2021. In August 2019, the U.S.
Administration for Community Living (ACL) awarded a five-year
cooperative agreement to implement the new Care Corps program to a team
of four organizations comprised of Oasis Institute, Caregiver Action
Network, the National Association for Area Agencies on Aging, and
Altarum. The four organizations named the new program the Community
Care Corps.
Community Care Corps fosters innovative local models to provide
volunteer non-medical assistance to family caregivers, older adults,
and adults with disabilities. Community Care Corps is an opportunity
for community organizations to use volunteers to address some of the
gaps in existing basic supports for family caregivers, older adults,
and people with disabilities. The program, intended as a demonstration
program over 5 years, will also evaluate the effectiveness of local
models in different communities nationally.
For tens of millions of Americans who are older, frail, or
functionally disabled, timely access to reliable assistance with simple
household tasks and meaningful companionship can make an enormous
difference in the quality of their lives and their ability to sustain
meaningful, ongoing connections to the community in which they live.
Today, 80% of the care for those over age 65 is provided by family
caregivers. Yet in the future there will be fewer caregivers. According
to AARP, in 2010, there were more than 7 potential caregivers for every
person over age 80. By 2030, the caregiver ratio will drop to 4 to 1;
and by 2050, the ratio drops to less than 3 to 1. During this same
period, the number of individuals over the age of 84 is set to rise by
350%.
Given the rapidly shrinking ratio of family caregivers to the
number of older Americans who need assistance, volunteers aged 18 and
older can help ameliorate the coming ``caregiving cliff'' brought on by
the nation's demographic changes. In support of the Care Corps program,
the Report accompanying the House Labor-HHS Appropriations bill last
year ``recognize[d] the growing demand for services and supports to
help seniors and individuals with disabilities live independently in
their homes, and the need to support family caregivers who facilitate
that independence.''
Interest in the new Community Care Corps program across the country
has been tremendous. Community Care Corps issued its first RFP in 2020
and received 183 applications from 45 states plus DC and Puerto Rico.
The application process was very competitive, with the 183 applications
totaling $23 million in funding requests. Clearly, not all applications
received funding (we were only able to fund 10% of the grant requests);
and those that did, did not receive the full amount requested.
We selected 23 grantees from 20 states from this competitive pool
of applications. The award amounts range in size from $30,000--
$250,000. The 23 grantees' local model volunteer programs are
community-based and provide a wide range of non-medical volunteer
services. Community Care Corps volunteer programs do not replace the
important services that the home care workforce and other paid
professionals provide to help individuals live independently in the
community.
Our 2020 grantees represent a diverse cross section of the nation,
representing urban, rural, Frontier and Tribal communities. The
grantees comprise numerous types of organizations including community-
based organizations, university-based clinics, area agencies on aging,
neighborhood villages, government agencies, coalitions, hospitals, and
social service organizations. The size of the organizations also varies
considerably--from very large such as Maryland's St. Agnes Hospital, a
member of Ascension Health, the largest non-profit health care
organization in the nation, to North Carolina's Carova Beach Volunteer
Fire and Rescue Auxiliary with a volunteer staff of one serving a small
ocean front community that can only be accessed by four-wheel-drive.
Grantees provide services to individuals of a variety of races and
ethnicities including Hispanic, Native American, White, Black, Asian,
and Native Alaskan. Two grantees specifically serve new Americans.
We particularly search for local grantees with innovative ways to
use volunteers to provide non-medical assistance in their community.
For example, in Alaska volunteers assisted the target population with
fishing and hunting to supplement food sources. The grantee in Michigan
leveraged face-to-face video calls to participants even prior to the
COVID crisis. In Connecticut, the grantee exercised flexibility by
using their Trusted Ride Transportation program to pivot and provide
COVID vaccine appointments and transportation for older adults in need
of the vaccine.
In the first six months--even with time needed to adapt their
original plans to the then-emerging Covid pandemic that required
changes in how they deliver volunteer services--the grantees have
already served 2,744 people. That included:
--2,273 older adults
--162 adults with disabilities
--309 family caregivers
Also, during the first six months, more than a thousand volunteers
provided non-medical services and 191 training sessions were held for
these volunteers.
Over the five years of the Community Care Corps program, local
models with the most promising results, most effective and efficient
outputs and outcomes, and greatest positive ROI will be assessed as
ideal candidates for broader dissemination. Several outcomes and
outputs are measured on a quarterly basis.
We are now about to begin the second grant cycle. The Senate
Appropriations Labor/HHS Subcommittee included $4 million for Community
Care Corps in FY 2021 and that was the level that was enacted for FY
2021. With the $4 million appropriated, we are able to fund additional
grants and look forward to getting applications for innovative
volunteer models from local communities across the country. The RFP for
new applications has just been released and applications will be
accepted through July 9. In addition, current grantees can apply for
second-year funds. One of the key enhancements to our 2021 RFP is an
intensified focus on diversity of volunteers, communities served, and
caregivers in both the application and review process.
Caregiver Action Network (CAN) is the nation's leading non-profit
family caregiver organization providing education, peer support, and
resources to family caregivers across the country free of charge. One
of the many things CAN does for Community Care Corps is to provide a
wide range of communication and outreach support. CAN works with the
grantees to capture videos of the experiences of care recipients,
family caregivers, and volunteers to amplify their collective voices
through stories. These videos provide a true and authentic voice that
increases awareness about the impact of grantee local models on their
communities. As of this reporting period, grantees have generated more
than 30 videos of volunteers, care recipients, family caregivers, and
staff that have been shared on social media, with local media outlets,
and with elected officials.
The first grant cycle of the Community Care Corps has been
extremely successful. With the tremendous interest in the program and
the large number of worthy applications from communities across the
country, we request doubling the appropriation for Care Corps to $8
million in FY 2022 from the $4 million level in FY 2021 (and the $5
million level in FY 2019). This will allow the program to fund more
local volunteer services and make up for the gap in funding that
occurred in FY 2020. Thank you.
[This statement was submitted by John Schall, Chief Executive
Officer, Caregiver Action Network.]
______
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 $10 billion for CDC's programs in FY
2022 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 CDC in FY 2021 and we are grateful for the
emergency supplemental funding provided for CDC to address COVID-19. We
urge Congress to continue efforts to build upon these investments to
strengthen all of CDC's programs. We strongly support the increases for
important CDC programs outlined in President Biden's FY 2022 budget
request and urge the committee to support these and other needed
funding increases for CDC programs.
CDC serves as the command center for the nation's public health
defense system against emerging and reemerging infectious diseases.
From aiding in the surveillance, detection and prevention of the
current COVID-19 outbreak globally and in the U.S. to playing a lead
role in the control of Ebola in West Africa and the Democratic Republic
of the Congo, to monitoring and investigating disease outbreaks in the
U.S., to pandemic flu preparedness to combating antimicrobial
resistance, CDC is the nation's--and the world's--expert resource and
response center, coordinating communications and action and serving as
the laboratory reference center for identifying, testing and
characterizing potential agents of biological, chemical and
radiological terrorism, emerging infectious diseases and other public
health emergencies.
CDC serves as the lead agency for bioterrorism and 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. Additionally, 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 strongly support the president's budget request for $400 million
in new 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.
Injuries are the leading causes of death for people ages 1-44.
Unintentional and violence-related injuries, such as older adult falls,
firearm injury, child maltreatment and sexual violence, account for
nearly 27 million emergency department visits each year. In 2013,
injury and violence cost the U.S. $671 billion in direct and indirect
medical costs. In 2019, opioids killed nearly 50,000 individuals
nationwide. CDC provides states with resources for opioid overdose
prevention programs and to ensure that health providers to have
information to improve opioid prescribing and prevent addiction and
abuse. In 2019, there were over 39,707 U.S. firearm-related fatalities.
We thank Congress for providing CDC with dedicated funding for firearm
morbidity and mortality prevention research and we strongly urge you to
support the president's request to double this funding in FY 2022. All
programs within the National Center for Injury Prevention and Control
must be adequately funded to conduct research, prevent injuries, and
help save lives.
In 2019, 659,041 people in the U.S. died from heart disease, the
nation's number one cause of death, accounting for about 23% of all
U.S. deaths. More males than females died of heart disease in 2019,
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
2019, 150,005 people died of stroke, accounting for about one of every
19 deaths. Annually, heart disease and stroke cost the U.S. an
estimated $363.4 billion in health care and lost productivity. CDC's
Heart Disease and Stroke Prevention Program; WISEWOMAN; 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 600,000 deaths from
cancer are expected in 2021. 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%. The National Breast and Cervical
Cancer Early Detection Program helps millions of low-income, uninsured
and medically underserved women gain access to lifesaving breast and
cervical cancer screenings and provides a gateway to treatment upon
diagnosis. The Colorectal Cancer Control Program improves screening
rates among targeted, low-income populations aged 50-75 years in
targeted states and territories through evidence-based interventions.
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 to address each state's particular
needs. We urge Congress to adequately support these critical programs.
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 34 million Americans living with diabetes, more
than 7 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.
Obesity prevalence in the U.S. remains high. More than 42% of
adults are obese and 19.3% of children ages of 2 to 19 are obese.
Obesity, diet and inactivity are cross-cutting risk factors that
contribute significantly to heart disease, cancer, stroke and diabetes.
The Division of Nutrition, Physical Activity and Obesity funds programs
to encourage the consumption of fruits and vegetables, encourage
sufficient exercise and develop other habits of healthy nutrition and
physical activity and must be adequately funded.
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 14% 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 initial investment in CDC's Social
Determinants of Health program and urge you to build upon this
investment by increasing funding for the program to ensure that public
health departments, academic institutions and nonprofit organizations
are supported to address the social determinants of health in their
communities that contribute to high health care costs and preventable
inequities in health outcomes. We urge you to support the president's
request of $153 million for this important program.
CDC oversees immunization programs for children, adolescents and
adults, and is a global partner in the ongoing effort to eradicate
polio worldwide. Childhood immunizations provide one of the best
returns on investment of any public health program. For every dollar
spent on childhood vaccines to prevent thirteen diseases, more than $10
is saved in direct and indirect costs. Over the past 20 years, CDC
estimates childhood immunizations have prevented 732,000 deaths and 322
million illnesses. We urge you to provide adequate funding for the
Section 317 Immunization program and other efforts to prevent vaccine-
preventable disease.
Birth defects affect one in 33 babies and are a leading cause of
infant death in the U.S. Children with birth defects that survive often
experience lifelong physical and mental disabilities. Approximately one
in six U.S. children is living with at least one developmental
disability and one in four adults live with a disability. The National
Center on Birth Defects and Developmental Disabilities conducts
programs to prevent birth defects and developmental disabilities and
promote the health of people living with disabilities and blood
disorders.
CDC's National Center for Environmental Health funds programs to
control asthma, protect from threats associated with natural disasters
and climate change 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
$10 billion for CDC's programs in FY 2022.
[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
Chairwoman Murray, Ranking Member Blunt, and distinguished members
of the Committee, it is an honor to appear before you today to discuss
how investments in the Centers for Disease Control and Prevention (CDC)
are protecting American's health, now and in the future. I am grateful
for this opportunity to address this committee, as well as for your
long-standing and consistent leadership on issues of critical
importance to the health of Americans, and the world.
It is my privilege to represent CDC at this hearing. CDC is
America's health protection agency. For 75 years, CDC has been trusted
to carry out its mission to protect America's safety, health, and
security. Even during the unprecedented circumstances of the past year,
CDC's scientific expertise, determination, selflessness, and innovation
has helped the agency continue to advance its mission. We work 24/7 to
prevent illness, save lives, and protect America from threats to our
health, safety, and security. Addressing infectious diseases and
pandemics, like COVID-19, is central to our mission. CDC's expertise
lies in our ability to study emerging pathogens like SARS-CoV-2, to
understand how they are transmitted, and to translate that knowledge
into timely action to protect the public's health. CDC identifies and
mitigates other causes of morbidity and mortality beyond infectious
diseases, such as environmental and workplace hazards and intentional
and unintentional injuries (such as those from falls, violence, or
overdose). CDC promotes healthy behaviors, such as exercise and
nutrition, to prevent chronic diseases such as diabetes and heart
disease, and to prevent outcomes such as stroke. We promote healthy
communities by increasing access to nutritious food and safe walking
and green space. By deploying experts on the ground to support our
state, Tribal, local, territorial and global partners, we translate
science into implementing guidance that protects individuals,
communities, and populations. In our work with other Federal agencies
we ensure the safe and appropriate use of medical countermeasures,
including vaccines, and collaborate with the academic and private
sector to further our understanding of new diseases and problems that
affect health.
The COVID-19 pandemic threw the United States and the world into a
health, economic, and humanitarian crisis. As the crisis unfolded, it
put a spotlight on pre-existing weaknesses and gaps that threaten the
health of Americans. It brought into stark light the great disparities
in health outcomes by race and ethnicity. We must acknowledge the long-
standing and too often unstated impact that racism has on public
health. The pandemic has also highlighted our frail public health
infrastructure, and the way that frailty impacted our ability to
respond at the necessary scale and speed.
Experts had warned for years that a pandemic of this scale was
coming. Today, we know to expect additional novel and currently rare
diseases to emerge and gain footing as a result of our changing
climate, closer interaction with animals, and globalization. Over the
last 12 years, the United States has faced four significant emerging
infectious disease threats--the H1N1 influenza pandemic, Ebola, Zika,
and COVID-19. These experiences show that public health emergencies
and, specifically, infectious disease threats, are here to stay. While
urgency demanded rapid and unique responses to each of these threats,
none resulted in the sustained improvements needed in our nation's
public health infrastructure. This lack of robust public health
infrastructure continues to present significant challenges in our
ongoing fight against COVID-19. In fact, emergencies have resulted in
the rapid build-up of infrastructure needed to address the emergency,
then dissolution of that infrastructure, often leaving no sustainable
infrastructure in place to address the next threat. This lack of robust
public health infrastructure continues to present significant
challenges in our ongoing fight to tackle COVID-19.
World-wide, billions of people do not and will not have immediate
access to COVID-19 vaccines. Cases will continue to increase, and
variant COVID-19 strains are likely to emerge, persist, and cause
outbreaks. As this becomes more common, our public health system at
home and abroad must be ready with highly sophisticated detection and
sequencing, combined with a rapid response at the source. The
unprecedented investments provided to CDC through COVID-19 supplemental
appropriations have helped our efforts to control COVID-19, and will
also go a long way toward addressing deficits in the core components of
the public health infrastructure that has long been ignored. Our
ability to respond to the next public health crisis will depend on
whether we invest in a public health system that is highly functional
on a day-to-day basis and pivots to meet new threats, rather than
continue our partial defense, which ramps up in response to an urgent
and often short-term event.
A resilient public health system can be realized with careful
planning that builds on the gains made with COVID-19 emergency
supplementals and incorporates lessons learned as a result of this
crisis, including reliable, flexible funding. The FY 2022 Discretionary
Budget Request for CDC and ATSDR includes a total funding request of
$8.7 billion, an increase of $1.6 billion over FY 2021 Enacted. This is
the largest increase in budget authority for CDC in nearly two decades
and defends Americans' health in four ways: (1) building public health
infrastructure, (2) reducing health disparities, (3) using public
health approaches to reduce violence, and (4) defeating other diseases
and epidemics.
First, building the public health infrastructure. CDC's FY 2022
request prioritizes foundational funding to rebuild the public health
infrastructure needed to safeguard the Nation's health and economic
security. Drawing on lessons learned, as well as the latest information
and technologies, CDC will begin to address long-standing
vulnerabilities in the U.S. public health network by training a larger
cadre of experts who can deploy and support public health efforts, and
building capacity to detect and respond to emerging global biological
threats.
Public health action is driven by data. Earlier improvements in our
systems for collecting information after other public health
emergencies, including Ebola and EVALI, facilitated exchange of health
information, linking local, state, and federal public health systems
with healthcare systems and the public. With investments in public
health data modernization in the FYs 2020 and 2021 appropriations and
the COVID-19 supplementals, CDC increased the scale and speed of these
systems during the COVID-19 response to protect people who are at risk
for severe illness (such as older Americans), those with chronic
medical conditions, and those from racial and ethnic minorities. These
advancements must be applied across the public health system and at all
levels of government. The funds requested in FY 2022 will be used to
continue building a modern disease surveillance system at CDC, which
will catalyze a multi-sectoral, comprehensive, and cohesive approach to
documenting evidence, using state-of-the-art technology and analytical
tools. CDC will continue working diligently to ensure its research and
data are of the highest quality and are disseminated nationally to
inform decision-making throughout the public health system, while
supporting advances in data systems at all levels.
The COVID-19 pandemic made clear the role that CDC labs and public
health labs across the nation play in conducting critical surveillance
and responding to outbreaks and emerging threats. CDC and state
laboratories were required to flex and surge during peak periods of
illness, far beyond routine clinical testing. In FY 2019, CDC was only
able to meet 50% of state and local health departments' stated needs
for epidemiology and laboratory capacity funding, with personnel
support being the biggest unfunded need, followed by equipment and
supplies. The FY 2022 request will foster innovation, collaboration
with the clinical system, and a commitment to quality. Improving
technologies at the state and local levels would enable public health
labs to quickly utilize and scale up essential laboratory analyses. In
a post-COVID-19 world, investments to maintain and improve laboratories
will help prevent the failures we experienced while trying to address
COVID-19.
The U.S. needs a workforce of qualified public health professionals
who will prepare for, respond to, and prevent public health crises.
Physicians working for states often earn less than $150,000 per year.
This is after having taken on medical school debt of $200,000 on
average. The FY 2022 request includes an increase to build a diverse
and culturally competent workforce who can rapidly develop innovative
approaches in surveillance and detection, risk communications,
laboratory science, data systems, and disease containment. With this
funding, CDC will support critical training programs for public health
professionals that develop strategic and systems thinking, data
science, communication, and policy evaluation. Existing cooperative
agreement mechanisms will be leveraged to support public health jobs
that meet current needs and attract new personnel to work in
underserved and rural areas.
Addressing gaps in capacity across levels of government to detect
and respond to outbreaks while maintaining and surging in other problem
areas requires investments to be disease-agnostic and flexible. With FY
2022 funding, CDC will provide support to health departments to meet
national quality standards, conduct performance improvement activities,
increase communication and collaboration across the public health
system, and reshape health departments to meet changing conditions and
needs. Funding will help health departments strengthen their abilities
to effectively respond to a range of public health threats, such as
COVID-19, and build capacities that do not currently exist.
COVID-19 is a sobering reminder that a disease threat anywhere is a
disease threat everywhere. Or as stated by WHO: no one is safe unless
everyone is safe. We cannot adequately protect American lives and the
U.S. economy without addressing global disease threats wherever they
may arise. CDC's strategic investments in global health security are
critical to U.S. health security by building sustainable global
capacity to prevent, detect, and respond to emerging infectious disease
threats. CDC works in more than 60 countries on more than 150 projects
and is a key implementing agency for the U.S. Government's leadership
role in the Global Health Security Agenda. With additional resources
requested in FY 2022, CDC will build on existing partnerships with
Ministries of Health, public health agencies, infectious disease
research institutions, and international organizations to strengthen
global laboratory capacity for early disease detection, enhance disease
surveillance for accurate data to drive decision making, and foster
effective regional and global coordination.
Next, I'd like to talk about reducing health disparities. The
disparities seen over the past year among communities of color were not
a result of COVID-19. In fact, the pandemic illuminated inequities that
have existed for generations and revealed a known, unaddressed, and
serious public health threat: racism. The well-being of our entire
nation will be compromised as long as we fail to address this.
Racism is not just discrimination against one group based on the
color of their skin or their race or ethnicity, but the structural
barriers that impact racial and ethnic groups differently to influence
where a person lives, where they work, where their children play, and
where they worship and gather in community. The social determinants of
health (SDOH)-such as high-quality education, stable and fulfilling
employment opportunities, safe and affordable housing, access to
healthful foods, commercial tobacco-free policies, and safe green
spaces for physical activity-are critical drivers of health inequities
in this country. CDC is building the evidence-base for collaborative
approaches to SDOH through community accelerator planning and expanding
a network of community health workers to develop a sustainable
infrastructure to improve health equity. CDC's FY 2022 budget request
includes an increase of $150 million to use a social determinants of
health approach to improve health equity and health disparities in
racial and ethnic minority communities and other disproportionately
affected communities around the country.
This budget directly responds to health disparities recorded in our
public health data. For example, about 700 women die each year in the
U.S. as a result of pregnancy or delivery complications, and American
Indian, Alaska Native, and Black women are two to three times more
likely to die than White women. Data show that about 2/3 of these
deaths may be preventable. Children from lower-income and racial and
ethnic minority households experience a disparate, increased risk for
lead exposure.
Achieving health equity is central to addressing the HIV epidemic.
The U.S. Government spends $20 billion per year in direct health
expenditures for HIV care and treatment. An estimated 1.2 million
persons have HIV and approximately 15% are unaware they have it. With
recent advancements in antiretroviral therapy and biomedical
advancements in HIV prevention, such as pre-exposure prophylaxis
(PrEP), along with effective care and treatment, we have the tools to
end the HIV epidemic. An increased investment requested in FY 2022 for
the Ending the HIV Epidemic (EHE) initiative will enable CDC to advance
the four key strategies needed to end the epidemic in the 57 EHE focus
jurisdictions. In addition, CDC will address health equity in the
entire HIV prevention portfolio, test innovation in service delivery
models to increase access to prevention services, use syndemic
approaches to broaden reach to key populations and create efficiencies,
and strengthen engagement of grassroots community-based organizations
in implementing EHE initiative.
Third, the budget request also addresses the public health epidemic
of violence. We know too well how this epidemic permanently alters the
lives of its victims and their families and puts enormous strain on our
communities and local economies. Increases in CDC's FY 2022 budget
request will help address violence through public health approaches,
which include improving reporting systems that provide the data needed
to understand and address violent deaths and injuries in the United
States.
And fourth, we must defeat other diseases and epidemics. Just as
racism underlies a number of public health issues, climate issues
underlie a number of infectious diseases and have significant health
impacts. Climate changes are associated with changes in the
geographical range of mosquitos, ticks, and other disease vectors.
Climate-related events impact a wide range of health outcomes. Some of
the most significant climate-related events-such as heat waves, floods,
droughts, and extreme storms-affect everyone. These climate events
compromise our access to clean air, clean water, and a reliable food
supply. In addition, climate events can impact the presence of
allergens and vectors, like ticks and mosquitoes, and the subsequent
health outcomes that can result from these changes in exposures. We
know that a changing climate can intensify existing public health
threats, and that new health threats will emerge: unequally distributed
risks (age, economic resources, location), increased respiratory and
cardiovascular disease, injuries and premature deaths related to
extreme weather events, changing prevalence and geography of foodborne
and waterborne illnesses and other infectious diseases, and threats to
mental health as people feel less safe.
CDC works with states, cities, and tribes to apply the best climate
science available, predicting health impacts, and preparing public
health programs to protect their communities. To do this, CDC developed
the Building Resilience Against Climate Effects (BRACE) framework to
help communities prepare for the health effects of climate change by
anticipating climate impacts, assessing vulnerabilities, projecting
disease burden, assessing public health interventions, developing
adaptation plans, and evaluating the impact and quality of activities.
With the requested increase in FY 2022, we can further expand the
Climate and Health Program by providing a larger number of health
departments with technical assistance and funding and finding
innovative ways to protect health via climate adaptations. As with
every other public health threat, we will inform our effort by building
and examining systems that collect data on conditions related to
climate, including asthma and vector-borne diseases, and coordinate
programs and communication that improve health outcomes.
The opioid epidemic has shattered families, claimed lives, and
ravaged communities across the Nation-and the COVID-19 pandemic has
only deepened this crisis. Addressing the current overdose epidemic
remains a priority for CDC. The Administration's strategy brings
together surveillance, prevention, treatment, recovery, law
enforcement, interdiction, and source-country efforts to address the
continuum of challenges facing this country due to drug use. CDC's role
is to prevent drug-related harms and overdose deaths.
The additional funding requested in FY 2022 to address the opioid
epidemic will enable CDC to provide more funding to all States,
Territories, and select cities/counties. CDC will prioritize support to
collect and report real-time, robust overdose mortality data and to
move from data to action, building upon the work of the Overdose Data
to Action (OD2A) program. To do so, CDC will partner with funded
jurisdictions to implement surveillance strategies that include
contextual information alongside data, as well as increase surveillance
capabilities for polysubstance use and emerging substance threats such
as stimulants. The additional resources requested will enable CDC to
support investments in prevention efforts for people put at highest
risk, for example, supporting risk reduction and access to medications
for opioid use disorder for people transitioning from alternate
residence (jail/prison, treatment facility, homeless shelter). CDC will
also address infectious disease consequences, such as viral hepatitis,
of the opioid epidemic.
I look forward to working together to address both the immediate
challenges ahead in our fight against COVID-19, as well as the
weaknesses in the public health infrastructure that left our country
vulnerable to this pandemic. We at CDC are grateful for your support.
We will continue to work tirelessly to ensure the health of this nation
and the world. Together, we can build a sustainable and resilient
public health system that can respond effectively to emerging threats
and also to ongoing public health needs of every American.
[This statement was submitted by Rochelle P. Walensky, M.D.,
M.P.H., Director, and Anne Schuchat, M.D.,Principal Deputy Director,
Centers for Disease Control and Prevention.]
______
Prepared Statement of the Christopher & Dana Reeve Foundation
Thank you for this opportunity to submit testimony in support of an
appropriation of $9,700,000 for the Paralysis Resource Center (PRC)
within the Administration for Community Living (ACL) at the Department
of Health and Human Services (HHS).
I am proud to speak on behalf of the 1 in 50 individuals living
with paralysis in the United States, who rely on programs like the
Paralysis Resource Center to live independent and empowered lives. The
Reeve Foundation has operated the Paralysis Resource Center for 19
years, competing in a rigorous, competitive bidding process every three
years for renewal of this grant. For fiscal year 2022, we request
funding of $9.7 million for the Paralysis Resource Center. Of this
total, we request that the Committee direct no less than $8.7 million
to the National Paralysis Resource Center. These requests are in line
with the final appropriation for FY21. The Reeve Foundation was also
pleased to see that the President's Budget for FY22 requests a 5%
increase for the Paralysis Resource Center.
When Christopher Reeve was paralyzed from the neck down due to a
spinal cord injury in 1995, his family found themselves in total
darkness as to what to do next. There was no phone number to call for
guidance or help. There were no experts reaching out to connect them to
the right rehabilitation facilities, or to discuss how they could
support his return home and ongoing well-being. There was certainly no
promise that an individual living with that level of spinal cord injury
could lead a full and active life as a father and husband. Yet, instead
of accepting that life with paralysis would be full of limitations, he
dreamed of a brighter future.
That was the genesis of the Christopher & Dana Reeve Foundation:
Christopher's dream to elevate the needs and rights of the 5.4 million
Americans living with paralysis. But he was far from alone. The real
drive behind the Paralysis Resource Center came from his wife, Dana. As
a caregiver herself, she knew that paralyzed individuals and caregivers
around the country needed a centralized place to call for resources and
expertise.
Since the PRC opened its doors in 2002, it has served as a free,
comprehensive, national source of informational support for people
living with paralysis and their caregivers. Our work is deeply aligned
with ACL's mission to empower people living with disabilities and older
adults to live independently and participate in their communities
throughout their lives. The PRC is the only program of its kind that
directly serves individuals living with spinal cord injury, MS, ALS,
stroke, spina bifida, cerebral palsy and other forms of paralysis. The
services and programs described below would not be possible without the
ongoing support of this Subcommittee.
A. The PRC's Core Programs
(1) Information Specialists. One of the PRC's most essential
functions is the team of certified, trained Information Specialists
(IS) who provide personalized support to individuals, families, and
caregivers on how to navigate the challenges of life with paralysis.
This team of experts, many living with paralysis themselves, are often
the first port of call for individuals who are newly injured or
diagnosed. Just twenty-four hours after my daughter, Ellie, sustained a
spinal cord injury, I contacted the Paralysis Resource Center. The same
day I was told my daughter would probably never walk again; I was
offered a lifeline. I believe that call turned the nose of the Titanic
away from the iceberg before it hit us. It altered the course of
desperation and isolation of what we were dealing with and gave us real
hope. I was assured that Ellie would drive again, work again, and enjoy
her life--and that the Foundation and the PRC team would hold my hand
the entire way. It is also important to note how critically their
services have been educating and supporting the paralysis community
during the pandemic.
To date, the PRC Information Specialists have provided direct
counseling to over 106,000 people. We have distributed 220,000 copies
of our Paralysis Resource Guide, which is a staple in hospitals and
rehabilitation facilities across the country.
(2) Peer & Family Support Program. A second pillar of the PRC is
our Peer & Family Support Program. This program is born of the idea
that the best source of knowledge is experience: and that peer-to-peer
connections empower not only the newly paralyzed individual, but also
the mentor. Through the PRC, more than 450 peer mentors have been
trained and certified in 43 states and Washington, DC. These
individuals have mentored over 17,000 peers.
(3) Quality of Life Grants Program. Our third pillar, the Quality
of Life Grants Program, operates at the community level to fund
nonprofit initiatives in all 50 states, the District of Columbia and
the U.S. territories. Since 1999, the Quality-of-Life Grants Program
has directed over $33 million dollars to assist over 3,300 projects.
This program has increased employment trainings and accessible
transportation; established adaptive sports programs and camps for
children; improved access to buildings, playgrounds, and universities;
helped individuals learn how to manage their financial well-being and
provided support services for veterans. In 2020, the PRC created a new
Quality of Life (QOL) grants program specifically aimed at addressing
social isolation during the COVID-19 pandemic, with the goal of
enhancing connectedness of people living with paralysis and their
caregivers to their communities and preventing adverse health outcomes.
(4) Military & Veterans Program; Multicultural Outreach Program.
The PRC has a comprehensive Military and Veterans Program, which
provides dedicated resources to help individuals navigate military and
civilian benefits and programs as they reintegrate into their
communities. The PRC also facilitates a Multicultural Outreach Program
that is designed to engage and support underserved populations like
racial and ethnic minorities, older adults, low-income earners, and
LGBTQ individuals.
(5) ChristopherReeve.org. One of the most challenging aspects about
living with paralysis is combating feelings of isolation and exclusion,
especially for those who are unable to leave their homes due to
physical and societal barriers. The Reeve Foundation's website,
ChristopherReeve.org, provides a vibrant online community and resource
hub as part of the PRC, which attracts close to three million visitors
per year, and Reeve Connect, our online forum, has allowed over 8,000
individuals to connect with experts, chat with one another and share
the experiences that matter to them in a secure, private space.
B. The Importance of Federal Funding.
I would like to close my remarks by emphasizing why federal funding
for this program is so important. Simply put neither the Reeve
Foundation, nor any organization competing to run the PRC, could
provide this type of centralized resource alone. Because many
individuals, including my daughter, are required to attend
rehabilitation clinics and/or draw on other resources from out of
state, nationwide expertise is required. To get the benefit of
investing in a centralized hub of information, we need to promote and
deliver these services at scale. Federal funds are essential for this
valuable, life-changing resource to work.
Christopher Reeve once said, ``Hope is like a lighthouse,'' helping
individuals who are lost in the darkness find their way. But like a
lighthouse, hope must be built on solid foundations. The resources,
support and community created by the PRC are the foundation for hope
for millions of individuals affected by paralysis around the country. I
thank you for your ongoing support and urge you to protect the
Paralysis Resource Center so that individuals nationwide can achieve
greater quality of life, health, and independence. Thank you.
______
Prepared Statement of the Coalition for Clinical and
Translational Science
fiscal year 2022 appropriations recommendations
_______________________________________________________________________
--CCTS joins the broader medical research community in asking
Congress to provide the National Institutes of Health (NIH)
with at least a $3.2 billion funding increase for FY22, to
bring total agency funding up to a minimum of $46.1billion
annually.
--Please provide the Clinical and Translational Science Awards
(CTSA) program at the National Center for Advancing
Translational Sciences (NCATS) with at least a $32 million
increase in dedicated line-item funding for FY22 to bring
annual support for the program up to a minimum of $620
million.
--Please provide the Cures Acceleration Network (CAN) at NCATS with
$100 million in dedicated funding for FY22.
--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 FY22.
--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 $10
billion for the Centers for Disease Control and Prevention
(CDC).
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, and distinguished members
of the Subcommittee, thank you for considering the views of the
clinical and translational research community as work on FY 2022
appropriations. The community deeply appreciates the ongoing investment
in medical research, including FY21 NIH funding and overall support for
the COVID-19 response. Moreover, CCTS commends you for continuing to
protect line-item funding for the CTSA program, which provides critical
research infrastructure support to meritorious institutions across the
country and serves as a major catalyst for advancing the full spectrum
of medical research at NIH. The value, importance, and impact of the
CTSA program as well as full-spectrum research at NIH was best
highlighted by our ability to quickly develop treatments, vaccines,
diagnostic tools, and health information to quickly respond to the
ongoing COVID-19 pandemic. As you consider FY 2022 funding, CCTS and
the broader community would like to highlight recent progress, emerging
opportunities, and the importance of sustained investment.
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.
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 2022.
recent ctsa activity
Yale Center for Clinical Investigation (YCCI)
YCCI initiated double-blind randomized outpatient covid treatment
trials involving the experimental drug apilimod dimesylate (LAM-002A),
a first in class, highly selective PIKfyve kinase inhibitor from
Connecticut Biotech firm AI therapeutics, which prevents SARS-CoV-2
viral entry into cells. Similarly, a randomized, double blind
outpatient repurposing trial of camostat mesylate, which inhibits SARS-
CoV-2 infection by blocking the virus-activating host cell protease
TMPRSS2, was simultaneously initiated. YCCI also supported
participation in multi-institutional randomized placebo controlled
trials including Pfizer-sponsored vaccine trials and a randomized,
placebo controlled cooperative inpatient trial of convalescent plasma
by a consortium of CTSA institutions. Innovative pandemic monitoring
approaches were developed including the measuring of SARS-CoV-2 RNA
concentrations in primary municipal sewage sludgeas a leading indicator
of COVID-19 outbreak dynamics.
The YCCI's Cultural Ambassador program, initiated eleven years ago,
has been a critical component in the response to the pandemic. This bi-
directional partnership influences Yale research priorities and drives
research that meets the needs of the surrounding community. The
Cultural Ambassadors, appointed by the community, collaborate with Yale
researchers on trial design, recruitment, and reducing access barriers
for the community and engage in advocacy and education efforts in the
community, driving awareness of the importance of clinical research.
The program builds trust-based relationships, increases health system
engagement and contributes to improved overall health. This has been
the lynchpin for community-based clinical trials that has resulted in
participation in clinical trials by underrepresented minorities of 31%
in the last academic year.
University of Washington
Limiting Opioid Abuse.--Over the last several years, our CTSA has
organized dozens of rural clinics into a network. This network
initiated an observational study of best practices in the management of
patients who are on long-term opioid therapy for chronic pain, which
evolved into a prescribing program. Rigorous testing of the developed
intervention at 20 rural practice sites demonstrated a 19% reduction in
high dose opioid prescribing.
COVID Clinical Trials in Rural Communities.--The UW CTSA, through
the development of the rural clinic network, was able to push clinical
trials from the UW to rural Washington rapidly. Providence Health in
Spokane, WA, one of our Network partners, was 1 of the first 10 US
sites to open the ACTIV-1 trial and enrolled their first participant 5
days after receiving the protocol. Inclusion of rural serving clinical
sites was critical to our regional communities as COVID-19 infections
were increasing dramatically in migrant farm worker populations.
Vanderbilt
The Vanderbilt Institute for Clinical and Translational research
was well positioned to respond to the pandemic in large part because of
the CTSA-supported infrastructure. First, the local ecosystem was
mobilized to organize and coordinate the local response. From this, we
identified the need to harmonize various trial activities across the
country, and NCATS supported initiatives for harmonizing COVID-19 trial
oversight and data pooling. At the same time, we were positioned to
conduct clinical trials with efficient contracting and regulatory
approvals, launching PassItOn--a trial of convalescent plasma--with
seed funding from Dolly Parton. NCATS supported the rest of the trial,
which has almost reached its enrollment target of 1000 patients. We
were also identified as the science unit for NHLBI's network of
networks, providing guidance to the agent selection, design, and
analysis of trials of the host-tissue response to SARS-CoV-2 infection,
building on the success of our drug repurposing program and
biostatistics programs. Continuing to springboard of these foundations,
we are now leading ACTIV4D-RAAS and serving as the DCC for ACTIV6, this
latter with funding through NCATS. Lastly, our CTSA-supported learning
health system has completed the only known large, randomized controlled
of prone positioning in moderately sick inpatients, with results in the
process of being disseminated.
University of Texas Health Science Center at San Antonio
Resources, facilities, and personnel from the Institute for
Integration of Medicine & Science, home to the UTHSCSA CTSA grant,
enabled a rapid, collaborative, and comprehensive response to the
COVID-19 crisis. Within weeks of the pandemic onset, UTHSCA established
a unique virtual clinic for newly diagnosed patients. Research teams
are characterizing health disparities and COVID-19 symptoms in this
majority (84%) Hispanic population. As part of the NIH Community
Engagement Alliance Against COVID-19 Disparities, CTSA specialists
partner with regional health professionals and local organizations in
underserved regions across South Texas to provide expert community
engagement, community based-participatory research, and dissemination
of best practices for COVID-19 care. As a result of the extensive
preparation of CTSA hub and network research infrastructure, UTHSCA was
among the top enrolling sites for major national studies including the
NIH Accelerating COVID-19 Therapeutic Interventions and Vaccines
(ACTIV) trials. CTSA support was also instrumental in launching a
pioneering study of immunological resilience in 522 Veterans with
COVID-19, which has yielded new biomarkers and new insights into the
relative vulnerability of males to serious illness.
[This statement was submitted by Harry P. Selker, MD, MSPH,
Chairman,
Clinical Research Forum.]
______
Prepared Statement of the Coalition for Health Funding
The Coalition for Health Funding--an alliance of 81 national health
organizations representing more than 100 million patients and
consumers, health providers, professionals and researchers--appreciates
the opportunity to submit testimony for the record about the importance
of health funding. Together, our members speak with one voice in
support of federally funded health programs with a shared goal of
improved health and well-being for all. While each member organization
has its own funding priorities within the Department of Health and
Human Services (HHS), our coalition is united in support of increased
and sustained funding for all federal agencies and programs across the
public health continuum--from bench to bedside--to ensure that all
Americans lead long, healthy, productive lives.
Today, we have an unprecedented opportunity to shape the future of
this country's public health infrastructure. The COVID-19 pandemic
critically strained health, social, and economic systems around the
world, and highlighted the importance of sustained and predictable
health funding. Supplemental funding to address the urgent needs of the
pandemic was, and continues to be, essential, but it alone is not the
solution to respond to future pandemics. For too long, Congress
neglected critical pieces of our public health infrastructure and
health research pipeline, which hindered our ability to respond quickly
and effectively when disaster struck. Now is the time to take
corrective action and make sustained investment in public health. We
learned many lessons during the pandemic, including that biomedical
research and a robust public health workforce are indispensable and
require sustained investment. A significant fiscal year (FY) 2022
allocation for public health funding will allow our health systems to
emerge stronger and better equipped to improve health outcomes.
The Coalition urges Congress to seize the opportunity FY 2022
presents as the first appropriations cycle in a decade not governed by
the spending caps of the Budget Control Act of 2011 (BCA). Without the
BCA imposed budget caps, Congress should provide funding increases
across the HHS accounts commensurate with the need for non-defense
discretionary programs that support public health, medical and
scientific research, infrastructure, education, public safety, and
more. Congress should follow the increase set forth in President
Biden's FY 2022 Discretionary Budget request and increase the HHS
budget by at least 23.5 percent or $25 billion above FY 2021 levels.
Increased funding will not only support future economic growth, but
will strengthen the health, safety, and security of all Americans.
HHS agencies play a key role in addressing our nation's public
health needs and work in partnership with state and local governments
to protect and promote health in our communities. While each agency
within HHS has a unique mission to respond to our nation's health
demands, they are all interconnected. For example, the COVID-19
pandemic has shown that investment in medical research at the National
Institutes of Health (NIH) is important, but on its own will not
improve health. You need the Food and Drug Administration to approve
new treatments. You need the Centers for Disease Control and
Prevention, Health Resources and Services Administration, Substance
Abuse and Mental Health Services Administration, and Indian Health
Service to ensure we have qualified health professionals who can
translate research into health care and public health delivery, support
Americans while they're awaiting new cures, and prevent them from
getting sick in the first place. You also need the Agency for
Healthcare Research and Quality to provide clinical evidence on what
treatments work best, for whom, and in what circumstances. And you need
the Administration for Community Living to support those who are aging
and those who have disabilities--as well as their caregivers--so that
they can live their best life, every day. Without robust funding for
all agencies and programs of the interdependent public health
continuum, we're falling short on the promise to protect and improve
the health and well-being of all Americans. Shortchanging public health
and health research programs--or cutting health programs--leaves
Americans vulnerable to health threats and will not prevent public
health crises from arising in the first place as we witnessed over the
last year.
As COVID-19 cases begin to decline and life starts to look more
like it did before the pandemic, it is important to recognize that the
pandemic's effects go far beyond the virus itself and will have long-
lasting impacts on Americans. Research is just one of the many areas
impacted by the pandemic that requires additional investment to get
back on track. Every agency within HHS conducts research that is
important to strengthening our public health system. Congress has a
responsibility to ensure that all agencies within HHS receive equitable
funding for efforts to regain some of the ground that has been lost due
to necessary pauses in and increased costs of research as well as
ensure the pandemic does not wipe out a whole generation of
investigators who were forced to choose other career paths because of
the disruption.
Another well-established impact of the pandemic has been the toll
it has taken on mental health and substance abuse. Four in ten adults
report symptoms of anxiety or a depressive disorder, up from one in ten
adults in June 2019. Substance abuse and misuse, including alcohol, has
increased by 12 percent.\1\ Gains made in the fight against the opioid
epidemic-another dire public health crisis-were diminished as an
estimated 87,000 Americans lost their lives due to overdose from
September 2019 to September 2020, a 29 percent increase over the
previous year.\2\ Adequate funding for preventive, supportive, and
rehabilitative services will be critical to address and reduce these
concerning trends.
---------------------------------------------------------------------------
\1\ Nirmita Panchal, R. K., & 2021, F. (2021, April 14). The
Implications of COVID-19 for Mental Health and Substance Use. KFF.
https://www.kff.org/coronavirus-covid-19/issue-brief/the-implications-
of-covid-19-for-mental-health-and-substance-use/.
\2\ Centers for Disease Control and Prevention. (2021, May 12).
Products--Vital Statistics Rapid Release--Provisional Drug Overdose
Data. Centers for Disease Control and Prevention. https://www.cdc.gov/
nchs/nvss/vsrr/drug-overdose-data.htm.
---------------------------------------------------------------------------
The detection and management of chronic diseases is another area of
public health that was set back as a result of the pandemic. An
estimated six in ten American adults have a chronic disease, with four
in ten having two or more.\3\ Restrictions on elective procedures and
non-urgent health care visits, coupled with concerns about the virus
and obstacles to connecting virtually with providers during the
pandemic caused many Americans to postpone routine care and skip
necessary screenings, which in some cases has negatively impacted
patients' ability to manage their disease.\4\ Additionally, the
millions of Americans now living with post-acute sequelae of COVID-19-
often referred to as ``long-haulers'' because they experience lingering
symptoms that last from weeks to months-could further increase the
number of people in the U.S. living with a chronic disease, like
diabetes or heart disease, and adds new complexities to our chronic
disease management efforts. As a result, there is a significant need
for increased funding for public health programs that reduce barriers
to care and help patients detect and manage their conditions.
---------------------------------------------------------------------------
\3\ Centers for Disease Control and Prevention. (2021, January 12).
Chronic Diseases in America. Centers for Disease Control and
Prevention. https://www.cdc.gov/chronicdisease/resources/infographic/
chronic-diseases.htm.
\4\ Kendzerska, T., Zhu, D. T., Gershon, A. S., Edwards, J. D.,
Peixoto, C., Robillard, R., & Kendall, C. E. (2021, February 15). The
Effects of the Health System Response to the COVID-19 Pandemic on
Chronic Disease Management: A Narrative Review. Risk management and
healthcare policy. https://www.ncbi.nlm.nih.gov/pmc/articles/
PMC7894869/#: :text=Obese%
20patients%20with%20chronic%20diseases,during%20in%2Dperson%20medical%20
visits.
---------------------------------------------------------------------------
Research, mental health, substance use disorders, and chronic
disease are just some of the areas of public health that have been
impacted by the pandemic and require increased investments. Despite the
funding included in the emergency appropriations packages, we have seen
setbacks in most, if not all, areas of public health. The only way to
remedy this situation is through robust and sustained funding. As the
country continues to work to build back, Congress has a responsibility
to make robust, sustained, investments in our public health system.
Health security is national security; Congress would not hesitate,
rightfully so, to make increased investments in defense or national
security after a crisis. Now is our chance to act boldly and make
investments in public health that will benefit all Americans. The goal
for our nation's public health system should not be to return to
normal, but rather to build a paradigm that makes the U.S. a healthier
country by addressing health disparities and ensures that when the next
public health crisis comes, we are prepared.
The Coalition for Health Funding strongly supports at least a 23.5
percent increase for the Department of Health and Human Services above
FY 2021 levels. We look forward to working with Congress to support the
health of all Americans and we hope that you will view us and our
member organizations as a resource.
[This statement was submitted by Erin Morton, MA, Executive
Director, Coalition for Health Funding.]
______
Prepared Statement of the Coalition for Service Learning
On behalf of the Coalition for Service Learning and the 160+
organizations we represent, we respectfully request that you include a
$250 million annual appropriation for the Learn and Serve America
program and related National Service Trust payments authorized by
Subtitle B of the Edward M. Kennedy Serve America Act in the FY22
Labor, Health and Human Services, Education and Related Agencies
Appropriations bill for the Corporation for National and Community
Service (CNCS) dba AmeriCorps.
Additionally, we request that accompanying report language include
the following:
``Within the total, the Committee provides funds for Summer of
Service programs, Semester of Service programs, and Innovative and
Community-Based Service-Learning programs in public schools and
institutions of higher education. Additionally, fifty-percent of the
funds are to be directed to economically disadvantaged communities and
at least five-percent to be set aside for payments to Indian tribes and
territories. Grants to disadvantaged communities are exempt from match
requirements. There shall be a two-percent set-aside of the total
appropriation for training and technical assistance contracts and
program evaluation.''
Lastly, since the AmeriCorps agency will need to increase their
capacity in order to administer these new programs, we request that
such sums as may be necessary shall be appropriated for agency salaries
and expenses under Subtitle K of the Serve America Act and such sums as
may be necessary for education awards for Summer of Service
participants in the National Service Trust.
The COVID-19 pandemic has amplified existing inequities in
education, isolated individuals, and put students' educational outcomes
at risk. Students are struggling academically but also socially and
emotionally, especially those in underserved areas. Engaging students
through service-learning is a proven way to instill a sense of
community, belonging, and responsibility and is a proven strategy to
help address the academic and emotional learning loss that has
occurred.
The congressionally-appointed bipartisan National Commission on
Military, National, and Public Service completed a report in March of
2020 in which it set a goal of all K-12 students receiving service-
learning experiences by 2031. It highlighted the opportunity to give
young people the problem-solving and academic achievement skills they
will need to be successful in school, work, and life. In the
Commission's vision, every American would be exposed to service
opportunities throughout their lifetime, beginning with young people
experiencing robust civic education and service-learning during
elementary, middle, and high school.
In order to achieve this vision, the Commission recommended that
Congress provide a $250 million annual appropriation to CNCS to award
competitive grants to SEAs, LEAs, IHEs, State Service Commissions, and
nonprofits to develop and implement service-learning programs for K-12
and postsecondary students across the country, including:
--$100 million for Summer of Service programs for students who will
be enrolled in grades 6-12 at the end of the summer;
--$100 million for Semester of Service programs for students in
grades 9-12; and
--$50 million for service-learning programs in public schools and
institutions of higher education.
Dedicated resources for educators and districts are essential for
the success of service-learning programs. Funding would enable school
districts to provide teachers with the training and support needed to
develop their service-learning skills and to build service-learning
activities into their curricula. Funding for Learn and Serve America
would help lower financial barriers and incentivize schools and
educators to actively promote and incorporate service-learning into
classrooms across the nation.
Service-learning is a critical program strategy at the intersection
of education, national service, and civic health, with positive impacts
on increasing academic engagement and 21st Century skill development,
meeting community needs while building a recruitment pipeline for
AmeriCorps programs, and improving civic education and participation.
We are hopeful that Congress recognizes the importance of
reestablishing a program that will help address academic and emotional
learning loss, re-engage students through service-learning activities,
and instill a sense of community. We urge Congress to provide $250
million for Learn and Serve America and are grateful for your
consideration of this request.
Best regards,
Amy Cohen, Executive Director, The George Washington University
Honey W. Nashman Center for Civic Engagement and Public Service, and
Former Director of Learn and Serve America
Susan Stroud, Senior Fellow, The George Washington University Honey
W. Nashman Center for Civic Engagement and Public Service, and Founding
Director of Learn and Serve America
Emily Samose, Founder, ECS Consulting, and Former Staff, Learn and
Serve America
Brad Lewis, Former Staff, Learn and Serve America
Amy Meuers, CEO, National Youth Leadership Council
Aaron Dworkin, CEO, National Summer Learning Association
Ally Talcott, Step Up Advocacy for the National Summer Learning
Association
Kate Cumbo, Executive Director, PeaceJam Foundation
Kaira Esgate, CEO, States for Service and America's Service
Commissions
Susan Abravanel, President, Susan Abravanel Consulting
Michael Minks, Vice President of Operations, Youth Service America
Steven A. Culbertson, President & CEO, Youth Service America
Coalition Members--National Organizations
Erik Peterson, Senior Vice President of Policy, Afterschool Alliance
Gary Kosman, CEO, America Learns
Dr. Ariel King, President, Ariel Foundation International
Abby Robinson, Acting CEO, Atlas Corps
Sage Learn, National Director of Government Relations, Boys & Girls
Clubs of America
Shawna Rosenzweig, Chief Strategy Officer, Camp Fire National
Headquarters
Andrew Seligsohn, President, Campus Compact
Kei Kawashima-Ginsberg, Director, The Center for Information &
Research on Civic Learning & Engagement, Jonathan M. Tisch College at
Tufts University
John Bridgeland, Founder &CEO, Civic
Robert Hackett, President, Corella & Bertram F. Bonner Foundation
Sanjli Gidwaney, Director, Design for Change USA
Marly Leighton, Chief of Staff, DoSomething.org
Vince Meldrum, President/CEO, Earth Force
Tamara Roske, Executive Director, Earth Guardians
Donna Ritter, Executive Director, Educators Consortium for Service
Learning
Adam Fletcher, Director, Freechild Institute
Amanda Antico, Founder, EvolvED Global
Stefonie Sebastian, Senior Service Engagement Specialist, National
FFA Organization
Donna Butts, Executive Director, Generations United
Linda Staheli, Founding Director, Global Collaboration Lab Network
Rick Lathrop, Founder/Executive Director, Global Service Corps
Sam Fankuchen, Founder & CEO, Golden
Patricia Hall, Founder, H2O for Life
Nichole Cirillo, Executive Director, IAVE
Serita Cox, CEO, iFoster
Doug Bolton, CEO, Cincinnati Cares, Inspiring Service
Bradley Hill, Director of Growth and Strategic Partnership, Junior
State of America
Betsy Peterson, Executive Director, Learning to Give
Robert Jackson, Sr. Director of Development, Martin Luther King Jr.
Center for Nonviolent Social Change
Abbie Evans, Senior Director, Government Relations, MENTOR
Sarah Fanslau, VP, Youth Programs, Multiplying Good
Gina Warner, President & CEO, National Afterschool Association
Kuna Tavalin, Consultant, National Center for Families Learning
Lawrence Paska, Executive Director, National Council for the Social
Studies
McClellan Hall, Founder, CEO, National Indian Youth Leadership
Project
Stephanie Grove, President, National Senior Corps Association (NSCA)
Fish Stark, Global Director of Programs, Peace First
Moran Banai, Managing Director, Policy and Government Relations,
Service Year Alliance
Lee Arbetman, Executive Director, Street Law
Derek Summerville, Director of Youth Engagement, YMCA of the USA
Adam Fletcher, Vice-President, Youth and Educators Succeeding
David Battey, President and Founder, Youth Volunteer Corps
Coalition Members--State & Local Organizations (listed alphabetically
by State)
Kids 1st Awareness Community Center (AL)
Blue Crew (CA)
California Campus Compact (CA)
CBK Associates (CA)
Cooline Team of East Palo Alto (CA)
Norte Vista High School (CA)
Playable Agency (CA)
S.C.R.A.P. Gallery (CA)
1 Sacred Place (CO)
Billig Consulting (CO)
Goldey (DE)
American University Center for Community Engagement & Service (DC)
Center for Social Justice Research Teaching & Service (DC)
Griffin Legacy & Associates (DC)
LearnServe International (DC)
Raising A Village Foundation (DC)
Beyond Before Community Development Corporation (FL)
Florida Atlantic University (FL)
FSU Center for Leadership and Social Change (FL)
Jacksonville University (FL)
Chautauqua Learn and Serve Charter School (FL)
Intentional Icon Inc (FL)
Miami Dade College Institute for Civic Engagement and Democracy (FL)
AFRD Georgia (GA)
Favor House (GA)
John & JeJuan Stewart Jr. Foundation (GA)
KIPP South Fulton Academy Beta Club (GA)
The Bridge Foundation (GA)
Making Dreams Come True Valley of Rainbows (HI)
Hawaii Pacific Islands Campus Compact (HI)
University of Hawaii Office of Civic and Community Engagement (HI)
Serve Illinois Commission (IL)
ProAct Indy (IN)
Serve Indiana Commission (IN)
Volunteer Center of Story County (IA)
Bluebird Experience (KY)
Kentucky Campus Compact (KY)
LSU AgCenter 4 (LA)
3Levels.org (ME)
Bates College (ME)
Harkins Consulting (ME)
Maine Campus Compact (ME)
Saint Joseph's College of Maine (ME)
Loyola University Maryland Center for Community (MD)
The Giving Square (MD)
University of Maryland College Park (MD)
Campus Compact Mid (MD)
No Struggle No Success (MD)
Notre Dame of Maryland University (MD)
The WordSmith (MD)
UMBC The Shriver Center (MD)
Wicomico County Public Schools MD (MD)
Jonathan M. Tisch College of Civic Life at Tufts University (MA)
Action 2 Achieve (MA)
Brandeis Center for Youth and Communities University (MA)
LEAP Arlington (MA)
Michigan Community Service Commission (MI)
West Michigan Consulting Services (MI)
Peacebunny Islands Inc/Peacebunny Foundation (MN)
Youthprise (MN)
Black Girls Rock of MS (MS)
CryOut Teen Organization (MS)
Missouri Community Service Commission (MO)
Center of Effort LLC (MO)
Montana Education Partnership (MT)
Boulder Elementary School (MT)
New Generation for a New World (NJ)
New Jersey Campus Compact (NJ)
Operation Grow Inc. (NJ)
Rider University (NJ)
Campus Compact of NY & PA (NY)
Grandma's Love Inc. (NY)
Hobart and William Smith Colleges/Geneva 2030 (NY)
Wagner College (NY)
GenerationNation (NC)
Ladies of Purpose Social Group Inc. (NC)
North Carolina Campus Compact (NC)
North Carolina Service Learning Coalition (NC)
Northern Marianas College (MP)
John Carroll University Center for Service & Social Action (OH)
Ohio Campus Compact (OH)
The Hero Within You Network (OH)
Oklahoma AmeriCorps (OK)
Camp Fire Central Oregon (OR)
Campus Compact of Oregon (OR)
Ecumenical Ministries of Oregon: Northeast Emergency Food Program
(OR)
Drexel University School Improvement Project (OR)
Drexel University Lindy Center for Civic Engagement (OR)
My New Journeys (PA)
University of Pennsylvania Netter Center for Community Partnerships
(PA)
Blackstone Academy (RI)
Carter County Drug Prevention (TN)
Carter County Drug Prevention/Keep Carter County Beautiful (TN)
Volunteer Tennessee (TN)
CAVALRY (TX)
City of Houston Volunteer Initiative Programs Office (TX)
El Paso Community College (TX)
Student Advocacy Coalition (TX)
The Leaders Readers Network (TX)
Sunrise High School (UT)
FYR is LIT (VI)
EDGE Consulting Partners (VA)
Independent Consultant K (VA)
OccupyFaith (WA)
Washington Campus Compact (WA)
Volunteer Center of Racine County (WI)
______
Prepared Statement of College on Problems of Drug Dependence
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. 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 substance use disorder field.
In the Fiscal Year 2022 Labor, Health and Human Services
Appropriations bill we request that the subcommittee include the
President's requested level of $51 billion for the National Institutes
of Health (NIH), including no less than $46.1 billion for NIH's base
program level budget. In addition, we greatly appreciate the President
Budget's recognition of the need to significantly increase our nation's
investment in the National Institute on Drug Abuse (NIDA) and its
response to the opioid epidemic. The President's Fiscal 2022 Budget
recommends a $372.2 million increase in NIDA's budget, a 25 percent
increase. We strongly encourage the Subcommittee to include the
President's recommended funding level of $1.852 billion for NIDA in the
Senate version of the Fiscal Year 2022 Labor, Health and Human Services
Appropriations bill.
We also respectfully request the inclusion of the following NIDA
specific report language.
Opioid Initiative. The Committee continues to be concerned about
the opioid overdose 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 data from the Centers
for Disease Control and Prevention that shows opioid overdose
fatalities increasing from 2018 to 2019, with the primary driver being
the increased overdose deaths involving synthetic opioids, primarily
illicitly manufactured fentanyls. To combat this crisis the Committee
has provided within NIDA's budget no less than $270,295,000 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 data released by the Centers for Disease Control and
Prevention, 32,000 overdose deaths involved drugs in the drug
categories that include methamphetamine and cocaine in 2019, an
increase of over 700%. 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. Methamphetamine is highly addictive and there are no FDA-
approved treatments for 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 which
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 which saw over 81,000 drug overdose deaths in the
United States in the 12 months ending in May 2020, 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 expand its 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 as the Institute
has done for the COVID-19 pandemic.
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. NIDA is encouraged
to continue supporting a full range of research on the health effects
of marijuana and its components, including research to understand how
marijuana policies affect public health.
Electronic Cigarettes. The Committee understands that electronic
cigarettes (e-cigarettes) and other vaporizing equipment are
increasingly popular among adolescents, and requests that NIDA 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 from regions of the country significantly
affected by the opioid crisis and follow them and their
children for at least 10 years. This knowledge will be critical
to help predict and prevent some of the known impacts of pre-
and postnatal exposure to drugs or adverse environments,
including risk for future substance abuse, 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 other NIH
ICOs to support this important study.
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 brain disease -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 heroin and 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 eliminated from society.
We understand that the FY2022 budget cycle will involve setting
priorities and accepting compromise, however, in the current climate we
believe a focus on substance use disorders deserves to be prioritized
accordingly. Thank you for your support for the National Institute on
Drug Abuse.
______
Prepared Statement of the Congressional Fire Services Institute
Dear Chair Murray and Ranking Member Blunt,
On behalf of the nation's fire and emergency services, we write to
urge your support for a vital program addressing the health and safety
of our nation's firefighters. As you consider the Fiscal Year (FY) 2022
Labor, Health and Human Services, Education, and Related Agencies
Appropriations bill, we urge you to fully fund the National Firefighter
Registry at the authorized level of $2.5 million. We very much
appreciate the program being funded at this level in FY2021 and we ask
that it be maintained this year.
During the 115th Congress, both the House and Senate unanimously
approved the Firefighter Cancer Registry Act (P.L. 115-194). The
bipartisan legislation created a specialized national registry to
provide researchers and epidemiologists with the tools and resources
needed to improve research collection activities related to the
monitoring of cancer incidence among firefighters.
Studies have indicated a strong link between firefighting and an
increased risk of several major cancers. However, certain studies
examining cancer risks among firefighters have been limited by the
availability of important data and relatively small sample sizes that
have an underrepresentation of women, minorities, and volunteer
firefighters. As a result, public health researchers are unable to
fully examine and understand the broader epidemiological cancer trends
among firefighters. The National Firefighter Registry is an important
resource to better understand the link between firefighting and cancer,
potentially leading to better prevention and safety protocols.
Thank you for your consideration, and your continued leadership and
support for America's fire and emergency services.
Sincerely,
Congressional Fire Services Institute
International Association of Arson Investigators
International Association of Fire Chiefs
International Association of Fire Fighters
International Fire Service Training Association
International Society of Fire Service Instructors
National Fallen Firefighters Foundation
National Fire Protection Association
National Volunteer Fire Council
[This statement was submitted by Michaela Campbell, Director of
Government Affairs, Congressional Fire Services Institute.]
______
Prepared Statement of the Consortium of Social Science Associations
On behalf of the Consortium of Social Science Associations (COSSA),
I offer this written testimony for inclusion in the official committee
record. For fiscal year (FY) 2022, COSSA urges the Committee to
appropriate:
--$46.1 billion for the National Institutes of Health;
--$10 billion for the Centers for Disease Control and Prevention,
including $200 million for the National Center for Health
Statistics;
--$500 million for the Agency for Healthcare Research and Quality;
--$800 million for the Bureau of Labor Statistics;
--At least $700 million for the Institute of Education Sciences; and
--$151.4 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 by the disruptions caused over the past year by
the COVID-19 pandemic.
national institutes of health
COSSA joins more than 360 organizations in support of $46.1 billion
for the National Institutes of Health (NIH) in FY 2022. COSSA
appreciates the Subcommittee's leadership and its long-standing
bipartisan support of NIH, especially during difficult budgetary times.
However, recent public health events continue to underscore the need
for additional investment.
To be truly transformative, NIH will need to continue to embrace
research from a wide range of scientific disciplines, including the
social and behavioral sciences. The Office of Behavioral and Social
Sciences Research (OBSSR), housed within the Office of the NIH
Director, coordinates basic, clinical, and translational research in
the behavioral and social sciences in support of the NIH mission, and
co-funds highly rated grants in the behavioral and social sciences in
partnership with individual institutes and centers. Unfortunately,
OBSSR's budget has been held roughly flat for several years despite the
sizable increases to the NIH budget. Knowledge about contagion and
social influences on health are needed now more than ever. In addition,
understanding behavioral influences on health is needed to battle the
leading causes of morbidity and mortality, namely, obesity, heart
disease, cancer, AIDS, diabetes, age-related illnesses, accidents,
substance abuse, and mental illness. We urge the Senate to emphasize
support for OBSSR and encourage NIH to increase the Office's budget in
FY 2022.
centers for disease control and prevention
COSSA urges the Subcommittee to appropriate $10 billion for the
Centers for Disease Control and Prevention (CDC), including $200
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. 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 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 $800 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 $700 million for the Institute of Education
Sciences (IES) in FY 2022. 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 $151.4 million
($134.3 million for Title VI and $17.1 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, and research scientists. We urge the
Committee to appropriate (1) at least $125 million for the HRSA Primary
Care Training and Enhancement (PCTE) program and (2) at least $500
million for AHRQ, specifically funding $5 million to AHRQ's Center for
Primary Care Research.
More than 44,000 primary care physicians will be needed by 2035;
however, current primary care production rates will not meet demand,
according to the authors of Annals of Family Medicine (Petterson, et al
Mar/Apr 2015). The PTCE programs and AHRQ research enhance our nation's
workforce and health infrastructure, creating better health outcomes
and lower costs.
Primary Care Training and Enhancement--Title VII
The PCTE 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.
We are concerned that the President's FY2022 Budget did not include
additional funding for the Primary Care Training and Enhancement
program. Additional funding for the PCTE program can help address many
of the failings and flaws of the current primary health care and public
health infrastructure that have been identified in the COVID-19
pandemic. For example, additional funding is needed for both
residencies and departments to help address faculty retention, public
health competencies, recruit and retain students into primary care,
develop new, innovative curriculum related to the pandemic and to
address segmented primary care workforce to reduce delivery system
division and increase full scope primary care providers.
A 2021 report by The National Academy of Science, Engineering and
Medicine (NASEM) on Implementing High-Quality Primary Care: Rebuilding
the Foundation of Health Care, 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% since the 1960s. Primary care training grants
under Title VII are vital to the continued development of a workforce
designed to care for the most vulnerable populations, including
concerns related to health equity.
We urge your continued support for this program and an increase in
funding levels to $125 million in FY 2022 to allow for a robust
competitive funding cycle to fund new initiatives to help address
issues related to the COVID-19 pandemic, and a shortage of primary care
providers. An example of the type of program supported by the PCTE
program was the Danbury and Griffin Hospital programs in Connecticut
who used it to develop innovative programs and curricula related to
interdisciplinary training.
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.
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, above FY2021 levels, is needed to accomplish these goals.
For this reason, we are supporting additional overall funding increases
for FY 2022 to $500 million as well as specific funding for the Center
for Primary Care Research of $5 million to help coordinate and direct
primary care research funding at AHRQ. We hope additional funding will
continue and expand the following goals: (1) development of clinical
primary care research and researchers (2) real-world application of
evidence, (3) the process of practice and health system transformation,
(4) how high functioning primary care systems and practices should
look, (5) how primary care practices serving rural and other
underserved populations adapt and survive, while expanding their
ability to address health inequities, and (6) how health extension
systems serve as connectors of research institutions with practices and
communities.
President's FY2022 Budget Request for AHRQ
The recently released Fiscal Year 2022 Budget request includes a
major, new primary care initiative at AHRQ totaling $10 million. The
Congressional Justification (CJ) for AHRQ, reminds Congress that ``AHRQ
is the only PHS agency that supports clinical, primary care research
which includes translating science into patient care and better
organizing health care to meet patient and population needs.''
We support the CJ's assertion that ``primary care research is
critical to AHRQ's mission to make health care safer, higher quality,
more accessible, equitable, and affordable.'' We are also pleased that
the primary care initiative discussed in the CJ would support the work
of practice-based research networks (PBRNs.) In order to fulfill the
promise of this initiative, we recommend a related initiative--that at
least $5 million of the amount Congress provides to AHRQ be directed to
the statutorily authorized Center for Primary Care Research within the
Agency. This would support the needed coordination and prioritization
of primary care research investments within AHRQ, as two recent
national studies have recommended.
Two Recent National Studies Support this Funding Request
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, including 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 $5 million in
dedicated funds for PCR, AHRQ could prioritize and coordinate
investments in PCR directly improving the health and wellbeing of
Americans. In 2021, The NASEM report on High Quality Primary Care
concurs with RAND's assessment on the importance of targeted funding
for PCR and recommends prioritization of funding for AHRQ's Center for
Primary Care Research.
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 for FY 2021 which would support important primary care
and health services research efforts. We also support $5 million in new
funding for the Center for Primary Care Research. CAFM looks forward to
working with the Subcommittee to protect HRSA primary care programs and
AHRQ--both entities enhance our nation's primary care workforce and
infrastructure.
______
Prepared Statement of the Covenant House International
Dear Chairwoman Murray and Ranking Member Blunt:
Covenant House is the largest charitable organization in North and
Central America housing and serving children and youth facing
homelessness including survivors of human trafficking. Every year, we
reach tens of thousands of young people in 33 cities in six countries:
The United States, Guatemala, Honduras, Mexico, Nicaragua, and Canada.
Since our founding, we have reached more than 1.5 million children and
youth. Our high-quality programs are designed to empower young people
to overcome adversity, today and in the future.
Covenant House strongly supports the Runaway and Homeless Youth and
Trafficking Prevention Act (RHYTPA) administered by HHS's ACF and
McKinney-Vento Act's Education for Homeless Youth program (ECHY)
administered by Department of Education, which have both proven to be
effective in addressing child and youth homelessness. Covenant House is
requesting significant investment increases in these main federal
programs reaching children and youth facing homelessness.
Across our 23 U.S. communities which currently benefit from these
programs, in FY20:
--9,300 youth were served through street outreach programs. 7,400
youth were served in residential programs and 6,400 youth were
reached in drop-in centers and non-residential programs.
--49 percent of youth served by Covenant House across the United
States reported a mental health diagnosis, nearly 50 percent
had not yet completed high school, and 33 percent have a
history of foster care.
--Over 80% of youth served were of young people of color, including
Black/African American and Latino. And based on our
groundbreaking research reported out in 2018:
--1 in 5 of youth interviewed reported being survivors of
trafficking, and
--22% of youth interviewed were offered money for sex on their
first night experiencing homelessness.
In addition to meeting basic needs, RHYTPA provides youth with
housing stability and the necessary supports of mental health
counseling, employment and training, education, and physical health
services-needed to ensure youth remain stable, health and connected to
caring adults. EHCY grants provide school stability and support to
proactively mitigate the risk of homelessness--more critical than ever
as schools recover from COVID. Covenant House also supports the Runaway
and Homeless Youth's Street Outreach program to outreach and engage
youth who are in unsafe living conditions.
Covenant House has received $4.8 million in RHYTPA grants since
2017 in regular grants and $861,000 from the CARES Act emergency
funding. While this funding has been critical to our network
maintaining services, the overall annual Runaway and Homeless Youth
program does not have nearly enough resources to meet the demand in the
field. Last year, there were 545 applications to the program but only
179 awards granted (less than 33 percent). The vast majority of these
applications scored at the highest level and were worthy of funding if
resources were available. As a result of this unmet demand, RHYA
programs often turn away thousands of youth each year due to lack of
available beds, leaving these children vulnerable without safe and
stable housing and increasing their risk of predation and harm.
As for EHCY, even prior to the COVID-19 pandemic, the U.S.
Department of Education reported record numbers of youth homelessness
in the 2018-2019 academic year, with more than 1.4 million youth
experiencing homelessness. The COVID-19 pandemic has only exacerbated
this issue. With only a quarter of school districts receiving support
through the EHCY program in a given year, it is clear that homeless
children and youth are still under-identified and face significant
barriers to school enrollment and education continuity.
The President's FY22 budget requested $145 million for RHYTPA
consolidated programs, including the Street Outreach Program.
--Covenant House is joining with our coalition partners in requesting
$300 million for RHYTPA to meet the basic safety and housing
needs of youth experiencing or at risk of homelessness.
The President's FY22 budget requested level funding at $106 million
for the McKinney-Vento Education for Homeless Children and Youth Act
program.
--Covenant House is joining with our coalition partners in requesting
$300 million for EHCY.
For additional information please contact Lori Maloney, SVP of
Advocacy at Covenant House, at [email protected] or Sally
Schaeffer, consultant, at [email protected].
[This statement was submitted by Kevin Ryan, President and CEO,
Covenant House International.]
______
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% 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 tissues in 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 definitely diagnose human prion diseases, determine their
origin, and determine whether the spread of CWD found in elk and deer
in 26 states in the U.S. and in 3 Canadian provinces has become a human
risk. A study in progress has shown that CWD was transmitted to
macaques (primates that are genetically similar to humans) by feeding
them contaminated deer meat. Unlike the BSE outbreak in cattle, CWD
prions are highly infectious and the disease transmits by contact and
through contaminated environment, including soil and plants, in free
ranging 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 oral 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 six 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 national 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, to what extent 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 over 7,500 suspected incidents
of suspected prion diseases and has definitely confirmed presence and
type of prion disease in more than 4,600 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
over 7,500 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, Creutzfeldt-Jakob Disease Foundation.]
______
Prepared Statement of Crowley Amanda Peel deg.
Prepared Statement of Amanda Peel Crowley
Madam Chairwoman,
It is an honor to provide testimony to the Subcommittee on behalf
of the thousands of children across the country who have had their
lives turned upside down by Childhood Post-Infectious Neuroimmune
Disorders, or CPINDs. These medical conditions develop after illnesses
and are thought to reflect a misguided immune system and inflammatory
response to infection.
I ask that the Committee consider providing language in the
Committee's fiscal year 2022 report under the Department of Health and
Human Services, Office of the Director, Multi-Institute Research Issues
account, directing the National Institutes of Health (NIH) to identify
research priorities for CPINDs, including PANDAS and PANS, and to
investigate these disorders across disciplines, including neurobiology,
neurology, immunology, rheumatology, infectious disease, and mental
health. We are also asking that NIH report to the Committee on the
incidence, causes, diagnostic criteria, and treatment of these
conditions, especially including ways to advance understanding and
improve clinical care. This year, there is an urgent need to better
understand post-infectious conditions because of COVID-19 and for NIH
to prioritize and fund CPINDs' research.
In 2020, the world woke up to the notion of post-infectious
complications as we witnessed the impact of COVID-19 in daily reports
of patients with chronic and delayed-onset symptoms. Growing research
data has confirmed the association of debilitating psychiatric and
neurological symptoms with the SARS-CoV-2 virus in both adults and
children. A significant number of children have developed neurological
symptoms with COVID-19 infection, including altered mental status. New
research describing late-developing psychiatric changes, including
anxiety, OCD, and aggression, in children following COVID-19 infection
concludes that SARS-CoV-2 should in fact be considered in the
differential diagnosis of a CPIND known as Pediatric Acute-onset
Neuropsychiatric Syndrome (PANS). The time has come to connect the
dots--it is more than clear that infections lead to neurological and
psychiatric symptoms. Robust research is under way, and we ask for
CPINDs to be included. We firmly believe that investigations into the
mechanism of CPINDs will have a far-reaching impact.
Children with CPINDs experience the onset of debilitating
neuropsychiatric and behavioral disorders following illness such as
influenza, ``strep throat,'' and COVID-19. Studies indicate that
misdirected antibodies and immune cells assault structures in a region
of the brain involved in emotion, cognition, and movement. It is not
surprising that, as in well-described types of autoimmune encephalitis,
the symptoms signal dysfunction is this same brain region.
Two neuroimmune conditions, Pediatric Autoimmune Neuropsychiatric
Disorders Associated with Streptococcal Infections (PANDAS) and
Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), were described
in 1998 and 2010, respectively. PANDAS is believed to be a variation of
rheumatic fever. Rheumatic fever can develop if streptococcal
infections are not treated properly, setting off an immune response
where antibodies and immune cells attack the heart, kidneys, joints, or
brain. The term PANS was developed as a broader diagnosis than PANDAS,
with the same symptoms arising from infections other than strep. These
disorders are often misdiagnosed as purely psychiatric, and early
opportunities to treat medically, by targeting the underlying
infections, inflammation, and immune dysfunction, are missed or delayed
leading to escalating severity and associated costs.
Families like mine are blindsided when children's personalities
completely change, and our kids are suddenly overcome by crippling
fears, obsessive thinking, compulsive behaviors and tragically,
suicidal thoughts. Some children are unable to separate from parents
and many cannot attend school, or even leave the house. When children
are unable to participate in school, they often experience learning
impairments and significant academic declines. Previously successful
students now need special education services, including aides to
support their learning and behavior. Children who previously wrote
legibly have such serious declines that they are no longer able to hold
a pencil. Some children are beset by severe motor and vocal tics
leading to further educational and social challenges. There is no part
of life that escapes unscathed.
There are other serious physical consequences to illness in these
children. Some, as young as four or five, suddenly appear anorexic,
restricting their eating to near starvation because of worries about
contaminated food or fear of choking. In extreme cases, children have
to be placed on feeding tubes.
Children experience massive mood swings and fly into aggressive
rages, full of irrational explosive anger. Even seven- or eight-year-
old children can become suicidal, with an obsessive feeling that they
have to die. Several children have ended their lives, and many others
have been hospitalized when their symptoms become serious or life-
threatening.
All three of my children have PANDAS, and our family's journey is,
sadly, typical. Their stories illustrate the need for standardized
clinical care and for accurate early diagnosis and education concerning
risks to children and the many burdens on families, schools, and health
care systems.
My two older children acquired multiple misdiagnoses as their
behaviors and symptoms worsened over years. We finally arrived at the
true cause of their illness: an undiagnosed, untreated strep infection,
the same bacteria that causes a sore throat. When they received medical
treatment, they showed improvements far beyond traditional psychiatric
therapies.
My children also exemplify the contrast between early diagnosis and
misdiagnosis. My youngest child was treated successfully when her
symptoms were new, but my oldest children 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.
With delays in diagnosis and care, children are at risk for further
decline and potential long-term disability as their brain inflammation
remains untreated. As symptoms escalate, the burden on families,
healthcare systems, and schools grows exponentially. Caregivers endure
significant lost work time and out-of-pocket medical costs. Insurers
pay for emergency room visits and inpatient treatment, as well as
ongoing pharmacological and behavioral treatment to manage unlivable
symptoms. Educational systems face an enormous financial burden when
putting special education services into place for children who need
increased academic and behavioral support.
There is a significant lack of NIH funding to support research into
these disorders and to understand their true cost and prevalence. To
date, the avenues for identifying, treating, and tracking post-
infectious neuroimmune patients are minimally developed. Only through
targeted research can we determine why some children develop
psychiatric symptoms after infection, find diagnostic biomarkers, and
demonstrate which treatments are most effective. We cannot achieve this
alone. Action needs to be taken by NIH to increase funding for research
into the causes and treatments of these conditions.
This year my family faced not only the ongoing trauma of PANDAS,
but the horrors of COVID-19, first-hand. My father, who was in good
health, was diagnosed last August and just weeks later was fighting for
his life. He continues his long road to recovery, 10 months later. Like
my children, the lasting damage was not done by the infection itself,
but by the immune response. If we knew how to recognize and treat this
complication early, we would have vastly different outcomes, not just
for COVID-19 patients but for the thousands of children not in the
spotlight who have CPINDs.
I want my family's experience with these devastating post-
infectious conditions to help other families who are suffering. SARS-
CoV-2 highlights both a pressing need and an opportunity for
collaborative research across disciplines to better understand how
neuropsychiatric complications develop and to find tools and treatments
for early diagnosis and treatment. The world has rallied medicine and
science in an unprecedented way this year. Let us also widen the scope
to continue work on CPINDs, including PANDAS and PANS. The time to act
is now--funding research will be a vital next step for the health of
our country and the future of our children. Parents are doing all we
can to support our children. Won't you please join with us to help
solve this nationwide health crisis?
[This statement was submitted by Amanda Peel Crowley, Founding
Member,
Massachusetts Coalition for Pans/Pandas Legislation.]
______
Prepared Statement of the 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 past funding for
Alzheimer's disease research at the National Institutes of Health
(NIH), and to submit this written testimony to respectfully request at
least an additional $289 million in Fiscal Year 2022 above the final
enacted amount for Fiscal Year 2021 for Alzheimer's disease research at
the NIH. Additionally, Cure Alzheimer's Fund respectfully requests at
least $560 million in total appropriations for the Brain Research
through Advancing Innovative Neurotechnologies (BRAIN) Initiative. The
BRAIN Initiative is playing an increasingly important imaging role in
the early detection and diagnosis of Alzheimer's disease.
Cure Alzheimer's Fund is a national nonprofit, based in
Massachusetts, that funds research with the highest probability of
preventing, slowing, or reversing Alzheimer's disease. Since its
founding more than 15 years ago, Cure Alzheimer's Fund has invested
more than $126 million in research through 530 grants in twenty-one
states.
With the sustained commitment this Subcommittee has shown to
Alzheimer's disease research at NIH, targeted investments into basic
research made by private organizations such as Cure Alzheimer's Fund,
have been leveraged into larger-scale research projects at NIH. An
analysis by Cure Alzheimer's Fund found that the close to $17 million
it invested in research in 2018, led to an additional investment of
close to $121 million by NIH in the next two years. This shows the
importance of continued and sustained investment for the Alzheimer's
disease research portfolio at NIH because discoveries happening today
will need to be funded in the future.
https://curealz.org/wp-content/uploads/2020/11/PV_Cure_Leverage_Annual
AppealInsert_R5V1.pdf
Without the ongoing commitment demonstrated by this Subcommittee,
investments made by private organizations, and the discoveries spurred
by these investments, would not be able to be further explored,
examined, and validated. The public-private partnership between groups
like Cure Alzheimer's Fund and NIH is vital to Alzheimer's disease
research because Cure Alzheimer's Fund can target investment in novel
research ideas, allow researchers to collect initial data and
strengthen their hypothesis, and then ``hand-off'' the project to NIH
for larger-scale investment and research that is beyond the scope of
Cure Alzheimer's Fund. The robust research portfolio at NIH allows this
continuum of research to continue and thrive.
Two concrete examples of this are the brain lymphatic system and
the role of the innate immune system in the development of Alzheimer's
disease. As I described in my written testimony last year, as far back
as 2010, Cure Alzheimer's Fund has supported research into the beta-
amyloid protein and its role in fighting infection. This was a novel
research concept that was not receiving federal support. However,
because of the investment made by Cure Alzheimer's Fund, the role of
the innate immune system and infection are now NIH research targets.
As Dr. Francis Collins, Director of the NIH, mentioned at a House
LHHSE Subcommittee NIH hearing on March 4, 2020, one of the most
promising areas of Alzheimer's disease research is the role of the
innate immune system in the development of Alzheimer's disease.
NIH has convened meetings (September 23-24, 2019) around the topic
of infection and viruses in the development of Alzheimer's disease.
This would not have happened without early investment in research and
the availability of larger-scale research funding made possible by this
Subcommittee.
https://curealz.org/news-and-events/abeta-may-have-beneficial-function-
as-part-of-the-innate-immune-system/
https://www.nia.nih.gov/about/naca/january-2020-directors-status-report
In the past, I have also highlighted the work of Dr. Jonathan
Kipnis and the role of the brain lymphatic system, and I want to again
highlight this research as an example of the importance of basic
research supported by Cure Alzheimer's Fund becoming a larger research
project at NIH.
In 2016, Cure Alzheimer's Fund supported research by Dr. Kipnis and
the role of Meningeal Lymphatics in cleansing the brain.
https://curealz.org/research/foundational-genetics/the-role-of-
meningeal-lymphatics-in-cleansing-the-brain-implications-for-
alzheimers-disease/
Cure Alzheimer's Fund's commitment to this research has continued while
the research has also been supported by NIH. NIH recently highlighted
this research in a press release at the end of April. Or five years
after Cure Alzheimer's Fund made its initial investment.
https://www.nia.nih.gov/news/brains-waste-removal-system-may-offer-
path-better-outcomes-alzheimers-therapy
Without Cure Alzheimer's Fund's first investment in 2016, and NIH's
larger-scale investment after that, this research would not have been
able to have been pursued so thoroughly. And this would not have been
possible without the sustained and continued commitment to Alzheimer's
disease research funding at NIH demonstrated by this Subcommittee.
As Cure Alzheimer's Fund continues to invest in research into novel
research targets, there are more opportunities for NIH to be able to
provide larger-scale research funding to help us better understand the
pathology of Alzheimer's disease.
Cure Alzheimer's Fund has supported research by Dr. Caleb Finch
into the role pollution and particulate matter play in the development
of Alzheimer's disease. The first investment Cure Alzheimer's Fund made
into this research was in 2014.
https://curealz.org/research/translational-research/air-pollution-and-
app-processing/
Last year, the National Academies of Sciences, Engineering, and
Medicine had a day-long symposium on Advancing the Understanding of
Chemical Exposures Impact Brain Health and Disease. Dr. Finch was a
presenter during this symposium.
https://www.nap.edu/read/25937/chapter/1
NIH is now supporting this research and it is becoming increasingly
important to not only Alzheimer's disease research, but environmental
justice research as well. We know that disadvantaged communities
experience higher rates of Alzheimer's disease; research like Dr.
Finch's is helping to identify environmental drivers like air-borne
pollutants.
Cure Alzheimer's Fund is supporting research into vascular
contributors to the development of Alzheimer's disease; African
Americans have higher risk of neurovascular issues that are risk
factors for Alzheimer's Disease as well as medical conditions of
concern in and of themselves.
https://curealz.org/research/amyloid/the-role-of-picalm-in-vascular-
clearance-of-amyloid-b-and-neuronal-injury/
https://curealz.org/research/foundational-genetics/neurobiological-
basis-of-cognitive-impairment-in-african-americans-deep-
phenotyping-of-older-african-americans-at-risk-of-dementia/
This is important research for both the understanding of
Alzheimer's disease and reducing health disparities for disadvantaged
communities. With sustained and continued support from this
Subcommittee, Cure Alzheimer's Fund will be able to continue to invest
in basic research knowing that NIH will have the necessary resources to
be able to provide larger-scale investment into these important
research topics.
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 $289 million above the
final enacted level in Fiscal Year 2021 for Fiscal Year 2022 for
Alzheimer's disease research at NIH, and at least $560 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 June 24, 2021.
[This statement was submitted by Timothy Armour, President and CEO,
Cure Alzheimer's Fund.]
______
Prepared Statement of Dave Purchase Project, the North American Syringe
Exchange Network, Tacoma Needle Exchange, and Coalition Partners
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 $120 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 2020, 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 $25,000 to 28 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 is experiencing an urgent and unprecedented drug
overdose crisis, with approximately 100,000 overdose deaths expected to
be counted in 2020 and potentially more in 2021. This would be an
increase of more than 40% over the previous record year of 2019.
According to the Washington State Department of Health, overdose deaths
accelerated in 2020, increasing by 38% in the first half of 2020 as
compared to the first half of 2019.
Overdose deaths have increased more dramatically among Black people
and communities of color. From 2015 to 2018, overdose deaths among
African Americans more than doubled (by 2.2 times) and among Hispanic
people increased by 1.7 times while increasing among white, non-
Hispanic people by 1.3 times. In Washington State, the increase in
overdose deaths was highest among groups already dealing with
inequitable health outcomes: American Indian/Alaska Natives, Hispanic/
Latinx, and Black people. While overdose deaths affect all racial and
ethnic groups, American Indian and Alaskan Native (AI/AN) populations
are disproportionately impacted in Washington State. The death rate
among AI/AN is more than 3 times the rate of overdose in the state (9.6
per 100,000). Preliminary 2019 data suggest that this pattern is
continuing, with AI/AN having the highest opioid overdose death rate
among all race/ethnic groups. (Washington State Opioid Overdose
Prevention Data Brief: DOH 971-043 October 2020.)
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.
On Saturday, August 24, 2019, Tacoma Needle Exchange participated in an
event sponsored by the Pierce County Recovery Coalition. At this event
we conducted opioid overdose reversal trainings and distributed free
Narcan, a nasal version of naloxone (a drug which reverses an opioid
overdose), to any individual who requested it. Approximately 1 month
later, at another community event, I was approached by an individual
who had attended the August event. He told me that as he was driving
home the night of the 24th, just after the event, when he stopped for
gas. As he was filling his car, a panicked woman came out of the gas
station and stated that someone had overdosed in the restroom. He ran
to the restroom and using the training and naloxone we had given him
just 2 hours earlier, saved the life of that individual. He stated how
grateful he was to us for providing him with the tools to save a life.
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 2019/2020, our team distributed approximately 18,000 doses
of naloxone and 1,259 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% of the reported overdose
reversals were performed by laypersons--other drug users, family
members, friends, bystanders--not by first responders. With additional
resources, SSPs can 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%. 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. In January 2021,
Drug Policy Alliance conducted a survey of SSPs that showed that 91% of
respondents experienced an increase in clients in 2020, many as a
result of the COVID-19 pandemic. During this time of skyrocketing need,
42% of respondents experienced funding cuts in 2020 and expect such
shortfalls to continue in 2021. In response to funding shortfalls, many
SSPs have been forced to lay off staff and reduce services.
Consequently, because of decreased and limited resources, SSPs cannot
reach the millions of people who may benefit from their life-saving
services.
Federal funding would expand access to critical and effective SSP
programs. NASEN's own data 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. 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 recent 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 FY2019, CDC provided technical assistance to
help ensure high-quality, comprehensive services and best practices for
SSPs.
With additional FY22 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. Unfortunately, with just months in office during a historic
COVID-19 pandemic and lacking a budget director, a director of the
Office of National Drug Control Policy, and other key officials needed
to respond to the overdose epidemic, the President's budget has only
increased funding by $6.5 million. This amount is inadequate to reverse
the dramatic increase in overdose deaths and to prevent continuing
outbreaks of HIV and hepatitis. Congress must 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 and recently overdosed on fentanyl, but
thankfully survived. Over the years I have given him money and I have
paid his rent. I have purchased him clothes and bought him food. Yes,
there are days when I just did not have the emotional energy to pick up
the phone when I knew it was him calling. I admit this sadly and
shamefully. On those days, and particularly on those days, I am
thankful for the kind of people who work at syringe services programs.
They give without expectation of return and without judgement. They
give when others cannot or will not. It is with this experience and the
life of my brother in mind that I respectfully urge you to increase
funding for these life-saving programs.
Thank you for your time and consideration of my testimony, and
please do not hesitate to contact me or Jenny Collier 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.]
______
Prepared Statement of the Deadliest Cancers Coalition
On behalf of the Deadliest Cancers Coalition, a collaboration of
national nonprofit organizations and industry focused on addressing
issues related to our nation's most lethal cancers, we submit this
statement in support of strengthening the federal investment in
deadliest cancers research conducted and supported by the National
Institutes of Health (NIH) and the National Cancer Institute (NCI). For
Fiscal Year 2022, we respectfully request $46.111 billion for the NIH's
base program budget level, including $7.9 billion for the NCI, as well
as the funding needed to establish a new Advanced Research Projects
Agency for Health (ARPA-H) that includes a focus on finding tools to
help patients diagnosed with one of the deadliest cancers. We further
request report language in the LHHS bill that continues to hold NCI
accountable for making progress on the goals and ideals of the
Recalcitrant Cancer Research Act (RCRA).
In his address to Congress, President Biden called for an ``end to
cancer as we know it''. As the national coalition that represents the
cancers for which we've seen the least amount of progress, we
wholeheartedly endorse this statement. We deeply appreciate Congress'
continued strong leadership in support of cancer research through the
steady increases you have provided to the NIH and NCI over the last six
years. Funding for the existing components of the NIH and NCI is a
critical component of making the goal of ``ending cancer'' a reality,
which is why we have joined with our partners in the One Voice Against
Cancer Coalition to support the funding requests for NIH and NCI listed
above.
We also support President Biden's call for a new ARPA-H that has an
initial focus on cancer and other diseases for the purpose of driving
transformational innovation in health research and speeding application
and implementation of health breakthroughs. As representatives of
patients who have been diagnosed with our nation's most lethal cancers
and those who currently have the fewest early detection and treatment
options available, we believe that ARPA-H has the potential to provide
a vital bridge between this dearth of effective tools and the improved
survival rates that are so desperately needed.
The discussion between physicians and patients diagnosed with a
deadliest cancer are currently focused on end-of-life instead of
exploring treatment options that will provide the best quality of life
and the extension of life. These cancers exemplify areas where medical
practice would be dramatically changed through the technologies and
platforms that could be developed under ARPA-H. For these reasons, we
urge Congress and the Administration to ensure that ARPA-H focuses on
the hardest problems and areas where medical practice will be
dramatically changed, including the deadliest cancers, as it develops
authorizing language.
We know that this Subcommittee will face many difficult decisions
as it is developing the FY 2022 Appropriations Bills. As you are
considering these bills, we further encourage you to structure ARPA-H
so that no funding is diverted from the core mission and budgets of the
NIH and NCI, but also allows for true innovation.
It is also essential that critical stakeholders in the cancer
community be involved at the earliest outset in the design, structure
and budget of these endeavors. ``Cancer'' is not one disease, so it is
therefore vital that stakeholders representing the range of the
``cancer experience'' be involved in these efforts. For this reason,
the Deadliest Cancers Coalition respectfully requests to be involved in
the process, starting in the initial phase.
The deadliest cancers offer a powerful example of the need for
continuing the path of sustained and robust increases for the NIH and
NCI. While the overall five-year relative survival rate for all cancers
combined has risen from 50 percent when the War on Cancer was first
declared in 1971 to 67 percent today, we have seen relatively little
success in improving survival for the deadliest cancers. Multiple
myeloma is one of the few ``success'' stories among this group as the
five-year survival rate was 34 percent when the coalition was founded
in 2008 and is now 54 percent.
Next year (2022) will mark the 10-year anniversary of the passage
of the RCRA, which requires that the NCI develop long-term strategic
plans for addressing recalcitrant cancers beginning with pancreatic
adenocarcinoma and small-cell lung cancer. The NCI has made progress in
implementing the statute, particularly with respect to pancreatic
adenocarcinoma and small-cell lung cancer. As a result of report
language in the FY 2020 and FY 2021 LHHS Appropriations bills, NCI will
undertake a scientific framework process for glioblastomas and
gastroesophageal cancers and recently issued a notice of intent to
publish a funding opportunity announcement for a Program on the Origins
of Gastroesophageal Cancers. It is therefore crucial that Congress
continue to shine a light on all recalcitrant cancers so they do not
slip back into the shadows and so progress on implementing the RCRA for
all of the deadliest cancers continues.
The Deadliest Cancers Coalition deeply appreciates the inclusion of
report language focusing on these cancers in years past, including the
FY 2021 language that reiterated Congress' intention that NCI develop a
scientific framework using the process outlined in the RCRA for stomach
and esophageal cancers and directed the NCI to identify future goals
for each of the deadliest cancers in the fiscal year 2022 CJ.
We are seeking language in the FY 2022 LHHS Appropriations bills
that continues to hold NCI accountable to the FY20 and FY21 language
and the goals and ideals of the RCRA. Given that NCI has been
responsive, to some degree, when Congress directs them to focus on
specific cancers, we ask the language identify liver cancer as the next
focus area. We are asking that the language specifies that the process
should include cholangiocarcinoma, which is cancer that originates in
the bile duct, but is grouped together with liver cancer, but want NCI
to have flexibility on which other liver cancer subtype(s) should be
included.
In addition, we continue to believe that it is critical that NCI
stipulates how it will continue the goals of the RCRA to develop and
implement strategic plans for the full range of recalcitrant cancers.
The 2012 legislation was first introduced by Representatives Anna Eshoo
and Leonard Lance and Senator Whitehouse and gained significant bi-
partisan support because it was clear that just following ``standard
procedure'' with respect to recalcitrant cancers was not working and
there needed to be a specific focus on determining research priorities
for these diseases. That need has not diminished.
The Deadliest Cancers Coalition was founded because we believe in a
future in which there is no form of cancer for which a diagnosis is an
automatic death sentence. All cancer patients should be able to select
the best treatment option for them in consultation with their physician
from a variety of effective treatments. Unfortunately, this year,
approximately 44 percent of all cancer-related deaths will be due to
one of the deadliest cancers, which means that we clearly have a long
road ahead of us before that future is more than a dream. We therefore
urge the Subcommittee to continue its leadership to ensure that NIH
receives $46.111 billion for the NIH's base program budget level for FY
2022, including $7.9 billion for the NCI, as well as the funding needed
to establish a new ARPA-H that includes a focus on the deadliest
cancers. We further urge you to continue to hold the Institute
accountable to making progress on the deadliest cancers through report
language in the FY 2022 bill.
______
Prepared Statement of the Department of Preventive Medicine and
Department of Medicine, Infectious Diseases
Dear Committee Members,
I am writing in support of a FY 2022 budget request for Department
of Health and Human Services to develop a national strategy and
implementation plan for the prevention, control and treatment of Herpes
Simplex Virus, Types 1 and 2.
It is a critical public health imperative to address Herpes Simplex
Virus (HSV), a chronic viral infection that impacts nearly half of
Black women in our country, disproportionately impacts LGBTQ
populations, and is a widely recognized driver of the HIV epidemic.
Approximately 40% of new cases of HIV infection are attributable to
chronic HSV infection. HSV also kills approximately 1,000 infants
annually as a result of neonatal herpes which is currently not a
reportable condition. Additionally, there is a growing body of research
indicating HSV as a contributing factor to Alzheimer's Disease,
Encephalitis, Bell's Palsy, among other neurodegenerative diseases.
There is currently no centralized national strategy to address HSV,
it is not tracked or routinely tested for, and the majority of spread
is via asymptomatic carriers unaware of their status. We can and should
be doing more to stop the spread and provide better treatment to the
nearly 1 in 3 Americans with this chronic condition.
If we prioritize women's and maternal health, the health of Black,
Hispanic, LGBTQ, indigenous and other at-risk communities, we must
prioritize Herpes Simplex Virus treatment and prevention. If we
prioritize mental health, biomedical research for incurable diseases
such as Alzheimer's or HIV, and dismantling systemic racism in
healthcare, we must also prioritize Herpes Simplex Virus control.
Addressing HSV addresses all of these national priorities and can
improve the health, quality of life, and reduce the economic burden for
millions of Americans.
Sincerely.
[This statement was submitted by Jeffrey D. Klausner, MD MPH,
Clinical
Professor, Department of Preventive Medicine and Department of
Medicine,
Infectious Diseases.]
______
Prepared Statement of Duke Health
Duke Health (the conceptual integration of the Duke University
Health System, the schools of Medicine and Nursing, the Private
Diagnostic Clinic as the independent, multi-specialty physician
practice, and other health and health research centers across Duke
University) would like to express appreciation for federal support
provided to academic health centers across the United States,
especially during the COVID-19 public health emergency. 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. Underlying these
ambitions is a belief that Duke Health is a destination for outstanding
people and a dedication to continually explore new ways to help people
grow, collaborate, and succeed.
Reflecting Duke Health's mission of ``Advancing Health Together,''
this written testimony outlines Duke Health's biomedical research and
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. For FY 2022, Duke Health respectfully requests at least $46.1
billion for the NIH. This represents a $3.177 billion increase over the
comparable FY 2021 funding level for the NIH, which would allow for the
NIH's base budget to keep pace with the biomedical research and
development price index (BRDPI) and allow meaningful growth of 5%.
At Duke, NIH funding plays a critical role in the advancement of
research and clinical care. NIH has supported research at the Duke
Clinical Research Institute, the world's largest academic research
organization working to improve patient care through innovative
clinical research; the Duke Human Vaccine Institute, a national and
international leader in the fight against major infectious diseases and
home to one of 12 Regional Biocontainment Labs; and the Duke Cancer
Institute, a top comprehensive cancer center in peer-reviewed research
support.
We are grateful for the emergency investments made by Congress over
the past year to meet historical challenges, and it is critical that we
continue to build upon the current foundation to sustain and grow our
nation's research enterprise.
We also are deeply grateful for the $40 million appropriated to the
National Institute of Allergy and Infectious Disease for Regional
Biocontainment Laboratories (RBLs) in the Consolidated Appropriations
Act, 2021. This investment bolstered the nation's preparedness for
biodefense and emerging infectious disease agents, including COVID-19,
as RBLs continue to provide some of the major advancements in
understanding and combating the coronavirus through the development of
vaccines, prophylactic and therapeutic treatments, and diagnostic tests
for SARS-CoV-2 and COVID-19 disease. We respectfully request that RBLs
be considered for an annual appropriation of $60 million to be shared
evenly among the 12 RBL research institutions beginning in FY 2022. The
assays for live virus neutralization for all the monoclonal antibodies
at Duke are done in the Duke RBL and it is where all live virus
cultures are done for CoV2 work. Additionally, Duke researchers have
created a vaccine with the potential to protect against all forms of
coronavirus that move from animals to humans, now and in the future.
The new vaccine has been 100 percent effective in non-human tests.
Finally, Duke Health asks the Subcommittee to not include language
that would limit the use of nonhuman primates in research that could
cripple the search for treatments and cures for many human diseases,
especially therapeutics and vaccines for COVID-19.
centers for disease control and prevention (cdc)
The CDC serves as the command center for the nation's public health
defense system against emerging and reemerging infectious diseases.
Now, more than ever, investments in the nation's public health
infrastructure and public health defense systems are critical. Duke
Health urges the Subcommittee to provide at least $10 billion for the
CDC in FY 2022. Among the CDC's many programs, the Prevention
Epicenters Program connects CDC's Division of Healthcare Quality
Promotion with academic investigators to conduct innovative infection
control and prevention research. The Duke-UNC Epicenter has
considerable experience and research expertise in hospital
epidemiology, infection control, antimicrobial stewardship,
epidemiologic studies of multidrug-resistant organisms, disinfection,
and sterilization. In addition, the Duke Infection Control Outreach
Network (DICON) and Duke Antimicrobial Stewardship Outreach Network
(DASON) engage over 60 community hospitals in the United States.
health resources and services administration (hrsa)
Duke Health appreciates the Subcommittee's continued investment in
Title VII health professions and training programs and Title VIII
Nursing Workforce Development programs at HRSA. These programs ensure a
well-trained pipeline of health professionals to meet the increasing
health needs facing the United States. For FY 2022, Duke Health
respectfully requests that the Subcommittee provide $1.51 billion for
Title VII and VIII programs overall, including $980 million to Title
VII programs and $530 million to Title VIII 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 urges the Subcommittee to provide $23 million in FY
2022 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. The success of cord blood stem cell therapies in
treating diseases and alleviating suffering makes an urgent and
compelling case for funding this program.
Duke Health respectfully requests the Subcommittee provide $31
million for the C.W. Bill Young Cell Transplantation Program through
the NCBI at HRSA in FY 2022. 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 $500 million for the
Agency for Healthcare Research and Quality in FY 2022. This funding
level is consistent with the FY 2010 level adjusted for inflation and
would allow AHRQ to rebuild portfolios terminated as a result of years
of past cuts and expand its research and training portfolio to address
our nation's pressing and evolving health care challenges. As the
agency that provides funding for health systems research, AHRQ is vital
to improving health, safety, and health outcomes for patients. AHRQ is
forward thinking, addressing issues such as data analytics, and is
providing important resources for healthcare professionals during
COVID-19.
Patients with sickle cell disease (SCD), an inherited red blood
cell disorder, often have intense pain that brings them to hospital
emergency departments (EDs) for immediate treatment. Their care can be
fragmented, with frequent hospitalizations and specialist care,
infrequent follow-up with primary care doctors, and repeat ED visits.
Funding from AHRQ supports activities at the Duke University School of
Nursing to improve the care of these patients in the ED department,
particularly through the development and use of evidence-based decision
support tools. In addition, 80 to 90 percent of medical center leaders
at the Private Diagnostic Clinic (PDC), a multispecialty physician
practice affiliated with Duke Health, reported fewer communications
breakdowns and better handling of disagreements after using AHRQ's
TeamSTEPPS(r) team training curriculum.
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
2022, Duke Health urges the Subcommittee to provide $81.9 million for
NCTSN.
NCTSN, which is coordinated by the UCLA-Duke University National
Center for Child Traumatic Stress, increases access to services for
children and families who experience or witness traumatic events. This
unique network of frontline providers, family members, researchers, and
national partners is committed to changing the course of children's
lives by improving their care and moving scientific gains quickly into
practice across the U.S. In recent years, estimates from the NCTSN
Collaborative Change Project (CoCap) have indicated that each quarter
about 35,000 individuals--children, adolescents, and their families--
directly benefited from services through this Network. Since its
inception, the NCTSN has trained more than one million professionals in
trauma-informed interventions. Hundreds of thousands more are
benefiting from the other community services, website resources,
educational products, community programs, and more. Over 10,000 local
and state partnerships have been established by NCTSN members in their
work to integrate trauma-informed services into all child-serving
systems, including child protective services, health and mental health
programs, child welfare, education, residential care, juvenile justice,
courts, and programs serving military and veteran families.
office of the assistant secretary for preparedness and response (aspr)
Duke Health requests that the Subcommittee provide $11.5 million,
full authorized funding, for the Military and Civilian Partnership for
the Trauma Readiness Grant Program for FY 2022 within ASPR. Originally
known as MISSION ZERO, this critical program would provide funding to
ensure trauma care readiness by integrating military trauma care
providers into civilian trauma centers. These partnerships allow
military trauma care providers to gain exposure to treating critically
injured patients in communities and keep their skills sharp to increase
readiness for deployment. Additionally, they allow civilian trauma care
providers to gain insight into best practices from the battlefield that
can be integrated into civilian care. Fully funding this program will
help to improve the nation's response to public health and medical
emergencies.
______
Prepared Statement of the Dystonia Medical Research Foundation
summary of recommendations for fiscal year 2022
_______________________________________________________________________
--Provide $46.1 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 $10 billion to facilitate timely public health
efforts.
--Please provide $5 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 (nih)
The Dystonia Medical Research Foundation urges the Subcommittee to
continue its support for natural history studies on dystonia that will
advance the pace of clinical and translational research to find better
treatments and a cure. In addition, we encourage Congress to continue
supporting NINDS, NIDCD, and NEI in conducting and expanding critical
research on dystonia.
Currently, dystonia research at NIH is supported by the National
Institute of Neurological Disorders and Stroke (NINDS), the National
Institute on Deafness and Other Communication Disorders (NIDCD), and
the National Eye Institute (NEI).
The majority of dystonia research at NIH is supported by NINDS.
NINDS has utilized a number of funding mechanisms in recent years to
study the causes and mechanisms of dystonia. These grants cover a wide
range of research including the genetics and genomics of dystonia, the
development of animal models of primary and secondary dystonia,
molecular and cellular studies in inherited forms of dystonia,
epidemiology studies, and brain imaging. We 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 a number of dystonia patient
advocacy group, led by the Dystonia Medical Research Foundation,
actively took part in the meeting and are working to ensure that
Congress continues to support robust NIH funding.
NIDCD and NEI also support research on dystonia. NIDCD has funded
many studies on brainstem systems and their role in spasmodic
dysphonia, or laryngeal dystonia. Spasmodic dysphonia is a form of
focal dystonia which involves involuntary spasms of the vocal cords
causing interruptions of speech and affecting voice quality. NEI
focuses some of its resources on the study of blepharospasm.
Blepharospasm is an abnormal, involuntary blinking of the eyelids which
can render a patient legally blind due to a patient's inability to open
their eyelids. We were pleased to see that Congress has encouraged both
NIDCD and NEI to expand their research into both spasmodic dysphonia
and blepharospasm.
We thank the committee for the increase for NIH in fiscal year
2021. 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 the creation of
the new 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 three months
for temporary relief of symptoms. This has worked well for me for over
a decade. At the start of this year, my insurance coverage changed when
my husband's company changed providers. As a result, I had to undergo
an extensive review process and change methods for obtaining my
medicine. The review lasted for four weeks. Multiple times during this
time period, my doctor and I were told that I had been denied coverage.
We had to make numerous phone calls to encourage the company and
specialty pharmacy to review my case again and again. These phone calls
were extremely difficult as my voice deteriorated from the delay in
treatment. The automated phone systems were the worst, but the
representatives also had trouble understanding my broken voice and I
had to repeat my information over and over. Finally, the company
determined my treatment is medically necessary and has approved it for
one 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 Education Finance Council
Chairwoman Murray, Ranking Member Blunt, and members of the
Subcommittee on Labor, Health and Human Services, Education and Related
Agencies, Education Finance Council (EFC) is submitting this testimony
because we have great concerns over the fast-approaching expiration of
the COVID-19 payment pause on federally-owned student loans and the
lack of certainty and guidance surrounding the September 30, 2021 date.
There is speculation about an extension of that pause, and we must be
cognizant of the herculean task of assisting more than 40 million
borrowers in transitioning back into repayment. We request that you
seek such certainty from the U.S. Department of Education (Department)/
Federal Student Aid (FSA) and require them to provide servicers of
federally-owned student loans, borrowers, and other stakeholders with
the date when the COVID-19 payment pause for federally-owned loans will
end.
This date certain must come as soon as possible as federal student
loan servicers need appropriate time to hire and train staff and begin
communication to borrowers in order to be fully prepared to
successfully transition borrowers into repayment. The pause, which
began in March 2020, is currently scheduled to end on September 30,
2021, and servicers are currently prohibited from communicating with
affected borrowers regarding entering repayment.
It is imperative that FSA communicate clearly and consistently, as
early as possible, with federal student loan servicers, borrowers, and
all stakeholders about when the COVID-19 payment pause on federally-
owned student loans will end. Borrowers need to have certainty about
when their loans will enter repayment, and communication about this
needs to begin as soon as possible with unified messaging. It all
begins with the Department/FSA providing servicers, borrowers, and
other stakeholders certainty of the end of the payment pause date so
that the information borrowers receive from servicers and other sources
is consistent.
This document describes what EFC members that service federally-
owned student loans must do to help borrowers prepare for the start of
repayment, ensure a smooth transition, and remain in compliance with
FSA requirements--a process that takes several months.
communication with borrowers
There are approximately 40 million borrowers that will enter
repayment when the COVID-19 payment pause for federally-owned student
loans ends. Outreach to these borrowers must begin many months before
repayment begins, particularly to those who are at a high risk for
falling into delinquency when payments resume,\1\ and to borrowers who
completed undergraduate study during the payment pause and have never
had to make student loan payments. However, servicers have been
instructed to temporarily cease communication with borrowers until
notified differently by the Department. It is critical that servicers
are allowed to begin this outreach as soon as possible to provide the
borrowers the information they need to prepare to enter repayment on
their student loans, especially certainty of the date that repayment
will begin.
---------------------------------------------------------------------------
\1\ The Department of Education's Congressional Budget
Justification for Student Aid Administration for Fiscal Year 2022
acknowledges this risk for certain groups of borrowers:
``...approximately 3.9 million borrowers shifted out of delinquency
status through the government-provided-forbearance. The Department
acknowledges that these borrowers are at high risk of re-entering
delinquency, and eventually defaulting, once the payment pause ends. In
addition, many borrowers who completed undergraduate study during the
payment pause have never had to make student loan payments at all,
which could also present special challenges. Further, some Americans
have experienced unemployment or decreased earnings during the
pandemic, and as a result, some borrowers who were current on their
payments prior to the pause may be at higher risk of delinquency.''
(Department of Education, Congressional Budget Justification for
Student Aid Administration for Fiscal Year 2022, AA-28).
---------------------------------------------------------------------------
Informing borrowers that they will be entering repayment, when it
will occur, and what will be required of them as early as possible and
via as many channels as possible will prevent unnecessary delinquencies
and default. Borrowers need time to budget and update their accounts.
For example, borrowers using direct debits need to know as soon as
possible if the direct debit will be automatically reapplied and the
amount and date of when the first debit will occur. If it is not
automatically reapplied, the borrower needs to know when and how to
reestablish that process long before payment becomes due.
Furthermore, the pandemic has disrupted the living situation of
many borrowers, making early outreach more important than ever. Many
borrowers have experienced changes in their living situations. Some may
have moved home with parents or relocated due to employment changes or
for other reasons but may not have updated their contact information
with servicers. It takes time to find those borrowers and ensure they
receive the proper notifications. Servicers must comply with
regulations that dictate how early different types of notices regarding
repayment and repayments plans must be sent to borrowers, which is an
impossibility until they are permitted to resume borrower
communications.
staffing and it needs
Many servicers experienced a reduction in staff during the COVID-19
pandemic and payment pause period due to attrition and the need for
fewer employees. Servicers need to begin hiring and training additional
staff as soon as possible to ensure that borrowers experience a smooth
transition back into repayment. However, uncertainty about whether the
payment pause will end on September 30, 2021, as scheduled is delaying
this process.
It takes time to locate, hire, train and prepare individuals to
service federal student loans. This process includes advertising and
interviewing appropriate candidates, completing federally required
background checks, completing application for and receiving FSA
security clearance (a process that can take weeks to months), and
training of new employees. Federal student loan programs and repayment
options and rules are very complex and servicing federal student loans
requires specialized training that can span 4 to 8 weeks, depending on
the servicer's training process and the employees' position with the
organization. In most cases, training will need to begin by mid-July to
be completed in time. Ongoing training occurs with personnel even after
they are released to communicate with borrowers to ensure they remain
current with any regulatory or statutory changes that may impact a
borrower.
There are also system changes that need to be implemented to get
millions of accounts back into repayment. This will require IT staff
time, and servicers need to know as soon as possible when this process
can begin.
We appreciate your consideration of this request for timely
communication to all parties in order to ensure we are collectively
prepared to best communicate and assist federal student loan borrowers
as they transition back to active repayment.
About Education Finance Council (EFC): EFC is the national trade
association representing nonprofit and state-based higher education
finance organizations that, as mission-driven, public purpose
organizations, are dedicated to improving college access, success, and
affordability in their states and nationwide. EFC members operate as
loan servicers and supplemental loan originators and provide a wide
array of college access and student success and support services and
resources.
[This statement was submitted by Gail daMota, President, Education
Finance Council.]
______
Prepared Statement of the Endocrine Society
The Endocrine Society thanks the Subcommittee for the opportunity
to submit the following testimony regarding Fiscal Year (FY) 2022
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
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 $46.1 billion for fiscal year (FY)
2021; to facilitate the translation of these advances to improve public
health, the Endocrine Society recommends the Centers for Disease
Control and Prevention (CDC) receive funding of at least $10 billion;
and to ensure that women have access to appropriate health services, we
recommend that the Title X program be funded at $737 million. This
request does not reflect emergency supplemental funds or new programs
situated in NIH including the Advanced Research Projects Agency for
Health proposed by the administration.
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. Endocrinologists also study interrelated systems, for example
how hormones produced by fat influence the development of cancer or
susceptibility to infections.
endocrine research is supported by numerous nih institutes
Endocrine diseases and disorders are studied by researchers funded
by multiple NIH Institutes and Centers (ICs). As such, it is critical
for NIH to receive a strong base appropriation with proportional
increases for all ICs. For example:
--Diabetologists funded by the National Institute of Diabetes and
Digestive and Kidney Diseases (NIDDK) are advancing knowledge
of inequities contribute to health disparities in outcomes
associated with COVID-19.\1\ Despite the critical importance of
this issue, NIDDK received a much lower increase in funding in
FY 2021, relative to other ICs.
---------------------------------------------------------------------------
\1\ Ebekozien, O., et al., The Journal of Clinical Endocrinology &
Metabolism, Volume 106, Issue 4, April 2021, Pages e1755-e1762, https:/
/doi.org/10.1210/clinem/dgaa920.
---------------------------------------------------------------------------
--Endocrine researchers funded by the National Institute of Aging
increased our understanding of how hormonal treatment for
menopause might improve stress responses in women.\2\
---------------------------------------------------------------------------
\2\ https://www.endocrine.org/news-room/press-release-archives/
2017/treating-menopausal-symptoms-can-protect-against-stress-negative-
effects Accessed March 11, 2018.
---------------------------------------------------------------------------
--Researchers funded by the Eunice Kennedy Shriver National Institute
of Child Health and Human Development (NICHD) are discovering
how hormones influence the gut microbiome, which in turn can
influence the development of polycystic ovarian syndrome
(PCOS).\3\
---------------------------------------------------------------------------
\3\ Torres, PJ, et al., The Journal of Clinical Endocrinology &
Metabolism, jc.2017-02153.
---------------------------------------------------------------------------
--Endocrine oncologists supported by the National Cancer Institute
(NCI) discovered how certain drugs used during pregnancy can
contribute to cancer risk in offspring.\4\
---------------------------------------------------------------------------
\4\ 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.
---------------------------------------------------------------------------
--National Institute of Environmental Health Science (NIEHS)-funded
researchers are investigating how chemicals found in cosmetic
products can disrupt endocrine systems resulting in increased
cancer risk.\5\
---------------------------------------------------------------------------
\5\ https://endocrinenews.endocrine.org/edc-exposure-during-
pregnancy-may-reduce-breast-cancer-protection/.
---------------------------------------------------------------------------
nih requires steady, sustainable funding increases
The Endocrine Society appreciates increases to the NIH budget in
recent fiscal years; however, the biomedical research community
requires steady, sustainable increases across the biomedical research
enterprise in funding to ensure that the promise of scientific
discovery can efficiently be translated into new cures. Research
budgets have been further stretched across NIH to drive research to
help us address the COVID-19 pandemic, and emergency supplemental funds
have not provided sufficient resources to advance necessary research on
COVID-19 while also sustaining progress on other national priorities.
Consequently, NIH grant success rates are predicted to remain close to
historically low averages, meaning highly skilled scientists will
continue to spend more time writing highly meritorious grants that will
not be funded. Young scientists will also continue to be driven out of
biomedical research careers due to the lack of funding.
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% in those under 60 and by 71% in
those 60 and older.\6\ In addition to supporting public health and
prevention activities, CDC's Clinical Standardization Programs in the
Center for Environmental Health are critical to improving accurate and
reliable testing of hormones, appropriate diagnosis and treatment of
disease, and reproduceable public health research. Adequate funding is
critically important to ensure that CDC has the capacity to address
existing and emerging threats to public health in the United States and
around the world.
---------------------------------------------------------------------------
\6\ The Diabetes Prevention Program (DPP) Research Group Diabetes
Care. 2002 Dec;25(12):2165-71.
---------------------------------------------------------------------------
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.\7\
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.
---------------------------------------------------------------------------
\7\ Frost JJ, et al., Publicly Funded Contraceptive Services at
U.S. Clinics, 2015, New York: Guttmacher Institute, 2017.
---------------------------------------------------------------------------
fiscal year 2022 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 2022 Labor, Health and Human Services, Education, and Related
Agencies appropriations bill:
--$46.1 billion for the National Institutes of Health
--$10 billion for the Centers for Disease Control and Prevention
--$737 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 $46.1 billion in fiscal year (FY) 2022 for the National
Institutes of Health (NIH), including increased support for vector-
borne disease (VBD) research at the National Institute of Allergy and
Infectious Diseases (NIAID); $10 billion for the Centers for Disease
Control and Prevention (CDC), including investments in the budgets for
VBD, global health, and core infectious diseases; and robust funding
for the Institute of Museum and Library Services (IMLS), including
$42.7 million for the Office of Museum Services.
ESA urges the subcommittee to support VBD research programs that
incorporate the entomological sciences as part of a comprehensive
approach to addressing infectious diseases. These efforts can help
mitigate the enormous impact that insect carriers of disease have on
human health. NIH, the nation's premier medical research agency,
advances human health by supporting research on basic human and
pathogen biology and by developing prevention and treatment strategies.
Cutting-edge research in the biological sciences, including 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 pesticide
resistance. Further, effective preventative treatments, including
vaccines, are not available for most VBD.
---------------------------------------------------------------------------
\1\ https://www.gatesnotes.com/Health/Most-Lethal-Animal-Mosquito-
Week.
---------------------------------------------------------------------------
Within NIH, NIAID conducts and supports fundamental and applied
research related to understanding, preventing, and treating infectious
diseases. The risk of emerging infectious diseases grows as global
travel increases in speed and frequency and as environmental conditions
conducive to population growth of vectors, like mosquitoes and ticks,
continue to expand globally. Entomological research to understand and
characterize the relationships between insect vectors and the diseases
they transmit is essential to enable scientists to reliably monitor and
predict outbreaks, prevent disease transmission, and rapidly diagnose
and treat diseases. For example, NIAID-funded researchers are working
to understand how common prevention tools like mosquito repellent work
at the molecular level. Although topical mosquito repellents such as
DEET are a popular tool for preventing mosquito bites and mosquito-
borne diseases like malaria, the mechanism they use to repel mosquitoes
is not understood. Using grant funding from NIAID, researchers from
Johns Hopkins University have determined that DEET is an effective
mosquito repellent because it masks human odors from female
mosquitoes.\2\ Researchers can use these findings to develop similar
safe, low-cost mosquito repellents to prevent mosquito bites, reducing
the burden of mosquito-borne diseases.
---------------------------------------------------------------------------
\2\ https://www.sciencedirect.com/science/article/abs/pii/
S0960982219311674.
---------------------------------------------------------------------------
ESA requests robust support for CDC programs addressing VBD and
support for the Centers of Excellence on VBD as authorized by the Kay
Hagan Tick Act in 2022 and beyond with at least $10 million per year as
well as $20 million for the Epidemiology and Laboratory Capacity (ELC)
program. 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% 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).\3\ 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.\4\ Importantly, spotted fevers have non-specific
symptoms, and fewer than 1% 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.\5\
CDC funding is crucial in the development of this and other educational
tools that equip health care providers to effectively combat tick-borne
diseases.
---------------------------------------------------------------------------
\3\ https://www.ncbi.nlm.nih.gov/pubmed/?term=30969821.
\4\ https://www.cdc.gov/media/releases/2019/p0513-rocky-mountain-
spotted-fever-training.html.
\5\ https://www.cdc.gov/rmsf/resources/module.html.
---------------------------------------------------------------------------
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 to establish regional
Centers of Excellence (COE) to address existing and emerging VBD. The
five centers, for which current funding expires 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.
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.
ESA requests robust funding for IMLS, including no less than $42.7
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.
[This statement was submitted by Michelle S. Smith, BCE, President,
Entomological Society of America.]
______
Prepared Statement of the Epilepsy Foundation
summary of fiscal year 2022 appropriations recommendations
_______________________________________________________________________
--Please provide $10 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 2021.
--$5 million for the CDC's National Neurological Conditions
Surveillance System (NNCSS).
--Please provide at least $46.1 billion for the National Institutes
of Health (NIH).
--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
medical research and public health 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 2022, please continue
this commitment and provide timely investments in the NIH and public
health and research programs at the CDC. 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 $10 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:
--In FY 20, 481 law enforcement and first responders, 5,033 school
nurses, 214,702 school personnel, and 4,071 students have been
trained on seizure recognition and seizure first aid. On-demand
training modules are being developed to scale up training of
these key, frontline community members.
--10,000 people have been certified in seizure first aid, though more
focus is needed on rural and ethnically and racially diverse
communities as nearly 40% of persons diagnosed with epilepsy
are African American or Hispanic and many people with epilepsy
in those communities have poorer health outcomes.
--To improve care in rural and underserved communities, Project ECHO
has educated more than 400 healthcare providers about managing
epilepsy, though more focus is needed on management of severe,
drug-resistant epilepsy and quality of care improvement
methods.
--60 community health workers in Texas and Illinois have been trained
to implement self-management programs resulting in improved
health outcomes for people with epilepsy. More funding could
scale up this evidence-based training in other states.
--By screening and addressing barriers to medication adherence, an
Epilepsy Learning Healthcare System is reducing healthcare
utilization and costs.
--Mental health screenings have been implemented and people with
epilepsy are being connected to self-management programs that
prevent and decrease depression since people with epilepsy at
increased risk for depression and anxiety.
Testimonials from Participants in CDC Epilepsy Program-Funded Efforts
Margaret, Fairfield, CT: ``Participating in HOBSCOTCH and learning
more about epilepsy and the brain helped me realize this diagnosis is
not something to be afraid or embarrassed of. By facing and dealing
with my diagnosis head on, I can take control of certain aspects of
epilepsy and improve my quality of life. HOBSCOTCH taught me strategies
that I now use every day to improve my memory.''
Kelsey, Seattle, WA: ``During the 8 weeks that I participated in
the PACES program, I learned a lot valuable information and had a
wonderful time meeting other people experiencing similar struggles as
me. I loved that the program integrated both a personable, solidarity
like approach while providing evidence-based information with the most
up to date epilepsy research. Having had epilepsy for over 15 years, I
thought that I had a strong grasp on most epilepsy topics. However, the
PACES program brought up different areas which I hadn't considered
before and I found really useful for personal introspection and to
share with other people in my life. I believe the PACES program is a
wonderful opportunity for individuals who both have either been
recently diagnosed or lived with epilepsy for a long time to share
their own experiences in a way that might change another person's life
and to learn important facts about the condition.''
Nancy Tindell, Geneva County, Alabama: After taking the school
nurse seizure training program myself in 2020, I strongly encouraged
all school nurses and school personnel in my county to take the course
because even I, as a nurse, learned a lot about both seizure types, new
rescue therapies on the market and more. As a school nurse in a small
town in Alabama, I am thankful for the support and trainings that
empower us to support the students with seizures and epilepsy in our
classroom and extracurricular settings.
Jon D. Brown, Founder and Chief Advocate, Black Men's Health,
Tallahassee, FL: We had an opportunity to collaborate with the Epilepsy
Foundation to not only bring awareness to and educate on the topic of
Epilepsy, but together we were able to specifically leverage June, as
Men's Health Month, to focus on a Seizure First Aid Certification
Training. Throughout virtual discussions with Lowell Evans, who spoke
on ``Living with Epilepsy While Changing the World,'' and Michael
Brown, who spoke on ``Are You Certified in Epilepsy First Aid? You
Should and Can Be,'' I learned so much vital information that provided
me new-found awareness, information, education, and confidence (key!)
to act if I am to find myself in the presence of someone having a
seizure. And, the subsequent training, facilitated by Michael Brown and
Luis Garcia, emphasized that this scenario might likely happen, as we
learned that 1 in 10 people will experience a seizure in their
lifetime. Mind-blowing, life-changing, and potentially life-saving
information; important conversations that I am committed to continue
having for broader reach throughout communities of color.
Fernando A., Columbus, Indiana: Project Uplift was very helpful to
help my wife understand my daily struggles. It helped me learn ways to
cope with my anxiety and to better communicate my thoughts and needs. I
feel that Project Uplift is a very valuable resource to spread
knowledge and awareness about the epilepsy community. I know that if
the program continues, it will help reduce the stigma around what it
means to be epileptic and create a safe community for those of us who
just want to feel heard and understood.
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 2022.
Please provide at least $46.1 billion for NIH 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 $150 million in FY 2017 to over $200
million in FY 2020. These resources have fueled scientific advancement
and led to support for a variety of research initiatives including:
Epilepsy Centers without Walls, The Epilepsy 4,000 (Epi4K)
collaborative, The Center for Sudden Unexplained Death in Epilepsy
(SUDEP) Research, The Epilepsy Bioinformatics Study for
Antiepileptogenic Therapy (EpiBiosS4Rx), The Channelopathy Associated
Epilepsy Research Center (CAREC), The Epilepsy Multiplatform Variant
Prediction (EpiMVP) Center.
https://www.ninds.nih.gov/Current-Research/Focus-Disorders/Epilepsy
Much more can be done though, particularly in the area of bold
cross-cutting initiatives and multi-center efforts. For FY 2022, we ask
the subcommittee to include key committee recommendations, like the
language below, to encourage additional epilepsy research in emerging
areas.
national institute of neurological disorders and stroke
Epilepsy.--The Committee notes the significant opportunities for
the NINDS to advance research on the epilepsies through multi-center,
multidisciplinary approaches like the Epilepsy Centers Without Walls
that help address the need for biomarkers of epilepsy and precision
medicine for new treatments and prevention for etiologically-defined
populations. This approach is also suited for nation-wide, coordinated
clinical and translational research frameworks to advance disease
modifying or prevention strategies for the epilepsies.
The Epilepsy Foundation thanks the subcommittee for its
consideration of these requests. If you have any questions, please
contact me.
[This statement was submitted by Laura Weidner, Esq., Vice
President,
Government Relations & Advocacy.]
______
Prepared Statement of Evermore
Chairwoman Murray, Ranking Member Blunt, and members of the
Committee, thank you for the opportunity to provide testimony
pertaining to fiscal year (FY) 2022 appropriations for the Centers for
Disease Control and Prevention (CDC). Your leadership has resulted in
major advances in the health and wellbeing of Americans, as well as
ensuring that our taxpayer dollars are appropriated to our nation's
most pressing health and human needs.
I submit this testimony on behalf of Evermore, a nonprofit
dedicated to making the world a more livable place for bereaved
families by raising awareness of the consequences and implications of
bereavement for society, advancing sound research that drives policy
and program investments, and advocating on behalf of bereaved families
for whom very limited legal protections are available in the aftermath.
The purpose of my testimony today is to alert you to an emerging public
health concern--bereavement--and its impact on millions of families
throughout the nation. Bereavement shares a powerful intersectionality
with multiple national public health emergencies, including COVID-19,
overdose, homicide, and suicide. As such, bereavement plays a key
gatekeeping role in determining whether we as a nation can turn the
corner on these ongoing public health crises towards national recovery
and wellbeing. This watershed moment offers us a rare opportunity to
effect long-needed and long-awaited systemic changes. These changes can
bring together a diverse array of seemingly disconnected, separately
raging crises to support our nation's grieving individuals, families,
and communities; compassionately lighten the burden of bereavement that
encumbers and shortens so many lives, and re-enable them to reach their
full potential.
Bereavement is a pernicious social concern threatening nearly every
aspect of family wellbeing and solvency for millions across the
country. The unexpected death of a loved one poses a dual threat to our
national well-being, as it is both among the most common major life
stressors, and the single worst lifetime experience, reported by
Americans in national surveys. Losing a loved one is not only a
personal tragedy, but casts a long shadow that can extend for decades
as it places surviving parents, children, siblings, and spouses at
significant risk for impaired health, premature death, and
underachievement. Some additional risks include serious mental health
disorders, teen pregnancy, violent crime involvement, youth
delinquency, substance abuse, diminished academic attainment,
diminished lifetime income, and less purpose in life, among many
others.
Perhaps most concerning, our national life expectancy--an index of
overall population health--has dropped by more than one full year. This
last happened nearly 80 years ago following the United States' entry
into World War 2. The implications of these statistics are sobering:
They not only indicate that many middle-aged people of child-bearing
and child-rearing years are dying, but that many children and
adolescents are losing their parents, grandparents, aunts, uncles, and
mentors. Recurring bereavement under tragic and often-traumatic
circumstances has now become a commonplace fact of life for many US
residents. Further, COVID and our other spiking epidemics have set back
progress in closing the racial health disparities gap by some 20 years.
Racial inequalities in bereavement are magnified across the life course
as Black Americans are more likely than White Americans to experience
the death of children, spouses, siblings, and parents. Black Americans
are three times as likely as White Americans to have two or more family
members die by the time they reach the age of 30. Black children are
three times as likely to lose a mother and more than twice as likely to
lose a father by age 10 when compared to White children.
To facilitate and inform future policymaking and national
investments, as well as develop an evidenced-based bereavement care
response system, Evermore encourages a budget increase of $2.5 million
in CDC's Office of Surveillance, Epidemiology, and Laboratory Services/
Division of Behavioral Health to collect bereavement prevalence and
incidence data via its Behavioral Risk Factor Surveillance Survey
(BRFSS). BRFSS is the nation's premier survey tool collecting data from
400,000 adults living in the 50 states, the District of Columbia, and
three U.S. territories. It is the largest continuously-conducted health
survey in the world.
The CDC is one the nation's most-trusted sources of data and
evidence on population and public health. Our nation requires
consistent and reliable data on the prevalence and sequelae of
bereavement on which to formulate sound policy and practice. Today, the
CDC collects mortality data, but not data pertaining to the bereaved
families who survive these death events, and what the ramifications
are. With five million individuals losing a loved one to COVID-19,
including an estimated 46,000 children who lost a parent, the need for
sound data collection to frame a federal response has never been
greater. Indeed, we have relied on private researchers--including
Ashton Verdery, Ph.D. of The Pennsylvania State University and Emily
Smith-Greenaway of the University of Southern California--to provide
these estimation models because the federal government does not measure
bereavement exposure.
By extension, bereavement prevalence and incidence for homicide,
suicide or overdose are currently unavailable, leaving us with no
accurate means of capturing its impact (perhaps better designated as
shockwaves) on individuals, families, and communities. This is a major
missed opportunity for our social and health systems to surveil,
monitor, and learn from our national epidemics and mount an effective
response. Adding bereavement exposure to BRFSS would provide key
demographic data, trends by race and geography, resulting in both a
better understanding of the scope of the problem and informing future
policymaking and program priorities and investments.
In 2019, Toni Miles, M.D., Ph.D. of the University of Georgia
piloted three bereavement exposure questions in Georgia's BRFSS module,
prior to the COVID-19 epidemic (see Figure 1). Her work found that 45
percent of Georgia BRFSS respondents were bereaved in the previous two
years. Extrapolating this figure to the overall state population, she
estimates that 3.7 million Georgian adults were recently bereaved. Her
work also estimates that approximately 400,000 Georgia adults had two
or more close family members die. African American adults are at
particular risk, with 58 percent reporting a loss. Those in their prime
working years are affected, with 48 percent of adults ages 35-64
experiencing a loss. Preliminary evidence indicates that bereavement
exposure may undermine capacity to work; 53 percent of those newly out
of work had experienced a family death.
Dr. Miles and her team found that persons who experienced any
family loss in the past two years were at a heightened risk of
reporting poor health, as well as physical and mental health problems
over the past two weeks within taking the survey. Persons experiencing
three or more losses were at the greatest risk of multiple health
concerns, ranging from obesity to binge drinking, relative to those
with no losses.
additional justification for requests
Publicly-available bereavement dataset. We request the creation of
a publicly available bereavement dataset enabling social and health
scientists to extrapolate risk factors and potential implications for
U.S.-based populations. Researchers will be able to examine
interrelationships between exposure and outcomes, ask new research
questions and begin to integrate this data into their existing research
endeavors intended to help individuals reach their fullest potential.
To that end, these data may influence CDC's Healthy People 2030 goals.
CDC's Health US, 2022. We request a special highlight section in
CDC's 2022 health status report to the nation, Health, United States.
This report presents key highlights and findings from federal health
data systems.
conclusion
To date, there is no national dataset capturing bereavement
prevalence and incidence as our nation is facing unprecedented loss.
Unequivocally, COVID-19 has reshaped our national landscape and is a
seminal moment detailing how lack of quality bereavement care taxes
individuals, families and the nation. Bereavement and its unintended
outcomes are inextricably linked to many of our federal health agencies
missions, priorities, and programs.
With more than millions of individuals in the United States
suffering the loss of a loved one to COVID-19 and countless others who
have lost a loved one to suicide, homicide, overdose, and chronic
disesaes like cancer and Alzheimer's disease, combined with the growing
evidence base about the profound long-lasting effects of bereavement on
individuals and community health, bereavement (as a marker of risk) and
quality bereavement care should be a priority for CDC and the federal
government. Bereavement exposure and by extension its care is an
essential element to any comprehensive public health strategy.
Thank you for the opportunity to present this testimony on behalf
of millions of bereaved Americans and thank you for your continued
leadership.
Sincerely.
[This statement was submitted by Joyal Mulheron, Executive
Director, Evermore.]
______
Prepared Statement of the Evidence-Based Leadership Collaborative
Chair Murray and Ranking Member Blunt, and members of the
Subcommittee, first, thank you for the opportunity to submit testimony
to the Subcommittee to outline critical federal funding priorities for
FY 2022. As we emerge from the health and economic crisis of the last
year, the funding decisions that federal lawmakers make in FY 2022 will
determine whether we have learned from the devastating consequences of
the COVID-19 pandemic, or whether we default to a perilous status quo.
It is with optimism that we will collectively improve upon the tragic
lessons of the coronavirus crisis that we submit our funding requests
for FY 2022.
In this sprit, we sincerely hope that Congressional Appropriators
will recognize the value of evidence-based programs (EBPs) to promote
health and prevent disease among older adults and make investments that
increase support for, and expand access to, these vital activities. On
behalf of the Evidence-Based Leadership Collaborative (EBLC)--a 501c3
organization that represents EBP developers, administrators, and
providers with more than 200 combined years in developing, evaluating,
scaling, implementing, and sustaining EBPs--we urge Subcommittee
Members to include relatively modest, but meaningful, funding increases
for the following programs within the Administration for Community
Living (ACL):
--$50,000,000 for Older Americans Act Title III D, Preventative
Health Services
--$16,000,000 for Older Americans Act Title IV, Chronic Disease Self-
Management Education (CDSME) Programs
--$10,000,000 for Older Americans Act Title IV Falls Prevention
Programs
Additionally, within the Centers for Disease Control and Prevention
(CDC), we urge the Subcommittee to make important additional
investments in chronic disease prevention programs, which are
especially important given the significant impact of COVID-19 on older
adults living with multiple chronic diseases.
These funding requests align with those of other national aging
advocacy organizations and coalitions that focus on disease prevention,
health promotion, and home and community-based services (HCBS)
provision for older Americans, including the National Council on Aging
(NCOA), the National Association of Area Agencies on Aging (n4a), and
the Leadership Council of Aging Organizations (LCAO).
the case for evidence-based programing for older americans
Evidence-based programs offer proven ways to promote health and
prevent disease among older adults. These interventions have a decades-
long track record of improving health and reducing costs when delivered
within community settings across the country. Community and home-based
delivery means improved access to quality care for older adults who are
traditionally underserved, by organizations that also address those
social needs that drive poor health and costs of care. These evidence-
based programs include, but are not limited to:
--the Chronic Disease Self-Management suite of programs, which teach
individuals how to manage ongoing health conditions;
--a Matter of Balance, EnhanceFitness, and Fit & Strong!, which
increase awareness of and target interventions to help prevent
fall-related injuries;
--Healthy IDEAS and PEARLS, which help to address and identify the
underlying symptoms of depression; and
--Healthy MOVES and other programs focused on improving physical and
emotional health through physical activity.
All of these programs, which are represented by the Evidence-Based
Leadership Collaborative, meet the Administration for Community
Living's criteria for the highest level of evidence. In addition to
ACL, the Centers for Disease Control and Prevention Arthritis Program,
Substance Abuse and Mental Health Services Administration's (SAMHSA)
National Registry of Evidence-Based Programs, and the Agency for
Healthcare Research and Quality Innovations Exchange recommend these
programs and find them to be the strongest of evidence-based programs.
The scale and scope of the challenges that the suite of EBPs
address demonstrates the importance of investing in effective
interventions. For example, chronic diseases are the leading causes of
death and disability in the U.S., whose costs constitute 90 percent of
the nation's $3.8 trillion in health expenditures. Older Americans are
disproportionately affected by chronic conditions; 80 percent have at
least one chronic condition, and nearly 70 percent of Medicare
beneficiaries have two or more. Older adults living with chronic
conditions, particularly Black, Indigenous, and other Persons of Color
(BIPOC), were more vulnerable to COVID-19 hospitalizations and deaths,
highlighting inequities in both health outcomes and access to quality
care.
Furthermore, falls are the primary cause of injuries and deaths
from injuries among older adults. Each year, an estimated one in four
older adults falls. Annually, more than three million fall injuries are
treated in emergency departments, resulting in nearly 800,000
hospitalizations. Yearly spending to treat injuries resulting from
falls totals $50 billion, 75 percent of which is paid for by Medicare
and Medicaid. These costs are expected to exceed $101 billion by 2030.
The pandemic exacerbated these challenges and contributed to other
emerging widespread concerns. For example, social isolation and
loneliness-a major contributor to poor physical, behavioral, and
cognitive health-increased drastically for high-risk older Americans
adhering to long-term stay-at-home orders and community shut-downs. The
spike in social isolation and loneliness among older adults also
spurred declines in physical functioning for many older Americans
because of reduced access to community supports and evidence-based
programs health promotion programs.
opportunities to expand evidence-based health promotion and disease
prevention programs with increased federal investments
Despite the growing and widespread barriers to EBP delivery during
COVID-19, program developers and community-based providers were quick
to adapt to the new reality and adopt program delivery models suitable
to a virtual world. Rapidly pivoting previously in-person programs to
online and telephonic delivery methods ensured that many of these
trusted, proven, and popular health promotion and disease prevention
strategies could continue and remain accessible during the health
crisis. Additionally, adapting EBPs to remote delivery demonstrated
long-term potential to address program participation barriers for
especially high-risk and historically marginalized populations
including rural and home-bound older adults.
Increasing FY 2022 investments in evidence-based disease prevention
and health promotion programs will allow providers to expand their
reach to older Americans whose health conditions worsened because of
the prolonged pandemic. Increased investments will also allow EBP
interventions to continue to offer, expand, and improve upon remote
program delivery options to overcome long-standing barriers for older
adults lacking access to in-person programing and to reaching
underserved communities with culturally and linguistically appropriate
services. This opportunity is a potential paradigm shift for these
proven, trusted, cost-effective interventions.
Given the potential to expand these programs as we recover from the
pandemic, we respectfully request that the Subcommittee prioritize the
following FY 2022 federal investments to support these important
disease prevention and health promotion programs.
oaa title iii d preventive health services
Title III D of the Older Americans Act delivers evidence-based
health promotion and disease prevention programs to prevent or better
manage the conditions that most affect quality-of-life, drive up health
care costs and reduce an older adult's ability to live independently.
However, investments have not been sufficient to ensure the diverse
array of proven, cost-effective interventions can be implemented in
communities nationwide, nor do they allow the to-date underfunded
network to amass the critical evidence-based data lawmakers seek.
Additional resources are needed to maintain the new reach and means of
both in-person and remote delivery so older adults maintain access to
these key services. We urge Congress to double appropriations funding
for OAA Title III D programs in FY 2022 to $50 million.
oaa title iv chronic disease self-management education (cdsme)
CDSME is a low-cost, evidence-based disease management intervention
which studies show to be effective at helping people with all types of
chronic conditions adopt healthy behaviors, improve health status, and
reduce use of hospital stays and emergency room visits. Prevention and
Public Health Fund allocations to ACL for CDSME have remained at $8
million since FY 2016, supporting over 14,000 community-based delivery
sites which have provided services to more than 550,000 individuals.
However, given that nearly 200 million people report having a chronic
disease, the reach of these programs has been only 0.25 percent of the
full population reach potential. We urge appropriators to increase FY
2022 funding for these programs to $16 million to expand access to
evidence-based, cost-effective chronic disease management programs to a
greater number of states and older adults in need across the country.
oaa title iv falls prevention
Evidence-based fall prevention programs offer cost-effective
interventions by reducing or eliminating risk factors, promoting
behavior change, and leveraging community networks to link clinical
treatment and community services. These programs have been shown to
reduce the incidence of falls by as much as 55 percent and produce a
return on investment of as much as 509 percent. In fact, in an October
2019 report on falls prevention, the Senate Special Committee on Aging
recommended continued investment and expanded access to EBPs aimed at
mitigating the risk of falls among older adults. Despite this
bipartisan support, falls prevention has been flat funded while the
incidence and costs of falls continues to climb. Therefore, we urge
your Subcommittee to increase the investment in these cost-effective
programs to $10 million to make these programs more widely available to
at-risk older Americans in every community.
In closing, these vital federal efforts that support health
promotion and disease prevention interventions across the country have
a profound impact on the quality-of-life of older Americans. On behalf
of myself, the Evidence-Based Leadership Collaborative, and other
national aging advocates, I implore you and your Subcommittee to
support FY 2022 funding levels for these programs that recognize the
value of, and expand access to, proven solutions for older Americans.
[This statement was submitted by Paul Hepfer, CEO, Project Open
Hand &
Evidence-Based Leadership Collaborative Board Chair.]
______
Prepared Statement of the Federal AIDS Policy Partnership's Research
Work Group
On behalf of the Federal AIDS Policy Partnership's Research Working
Group, we thank Chairwoman Senator Murray, Ranking Member Senator
Blunt, and members of the subcommittee for the opportunity to submit
testimony to the Senate LHHS Subcommittee on Fiscal Year 2022 (FY 2022)
Appropriations for the National Institutes of Health (NIH) in regards
to protecting, strengthening, and expanding our nation's HIV/AIDS
research agenda. The Research Work Group (RWG) of the Federal AIDS
Policy Partnership (FAPP) is a coalition of more than 60 national and
local HIV/AIDS research advocates, patients, clinicians and scientists
from across the country. Our goal is to advance and support U.S.
leadership to accelerate progress in the field of HIV/AIDS research.
The FAPP RWG urges the subcommittee to recommend a FY 2022 budget
request level of at least $46.1 billion for the NIH consistent the
request of the Ad Hoc Group for Medical Research. We also ask that
$3.845 billion be allocated for HIV research at the NIH in FY 2022,
which is the research need identified by the Office of AIDS Research in
their Congressionally mandated FY 21 Professional Judgment Budget.
Public investments in health research via NIH have paid enormous
dividends in the health and wellbeing of people in the U.S. and around
the world, particularly for people living with, or vulnerable to, HIV.
NIH funded AIDS research has supported innovative basic science for
better drug therapies, and evidence-based behavioral and biomedical
prevention interventions which have saved and improved the lives of
millions. NIH funding has contributed to over 210 approvals for a range
of novel therapeutics between 2010 through 2016, with new anti-
infectives for HIV and HCV receiving the second largest fraction of
those approvals. Additionally, NIH support was crucial in the
development of pre-exposure prophylaxis (PrEP), an HIV prevention tool
that is upwards of 99% effective in preventing sexual transmission.
NIH-supported HIV research is now critical to advancement of possible
treatments and several vaccines against COVID-19.
HIV research advances at the NIH hold the potential to end the AIDS
epidemic, as well as update prevention approaches and improve outcomes
along the treatment cascade--a cornerstone of the initiative to End the
HIV Epidemic in the U.S. In addition, the average age of people living
with HIV in the United States is increasing, so it also remains
critically important to make substantial investments in research on co-
morbidities and new antiretroviral therapies. NIH research is critical
to ensuring that aging population stays healthy and virally suppressed.
Since 2003, funding for NIH HIV research has failed to keep up with
our existing research needs--damaging the success rate of approved
grants and leaving very little money to fund promising new research--
despite increases to the overall NIH budget. According to the
Biomedical Research and Development Price Index (BRDI)--which
calculates how much the NIH budget must change each year to maintain
purchasing power--between FY 2003 and FY 2020, the NIH budget in
constant dollars according to BRDI will have declined by almost half.
Investment by the NIH has transformed the HIV epidemic from a
terrible, untreatable disease to a chronic condition that can be
managed through once-a-day drug regimens. Now is the time to increase
investment for the NIH to finish the job and end the HIV epidemic
through strategic, science-based interventions. NIH funding of HIV/AIDS
research provides an example of innovation at work where investment in
basic and translational research, working in partnership with industry
and community, can move quickly to develop solutions. NIH investments
in HIV/AIDS research add value by seeding ideas later taken up in
industry partnerships and creating innovation incubators for important
medical advances with significant health impact.
Federal support for HIV/AIDS research has also led to new
treatments for other diseases, including cancer, COVID-19, heart
disease, Alzheimer's, hepatitis, osteoporosis, and a wide range of
autoimmune disorders. Several HIV/AIDS treatments have been researched
as treatments for the novel coronavirus--saving months of research time
and, in the process, potentially countless lives. Coronavirus vaccine
research is now ongoing using platforms and technology, such as Ad26
and mRNA, previously developed for use as an HIV vaccine.
Robust funding for NIH overall enables research universities to
pursue scientific opportunity, advance public health, and create jobs
and economic growth. NIH funding puts approximately 300,000 scientists
to work at research institutions across the country. According to NIH,
each of its research grants creates or sustains six to eight jobs and
NIH-supported research grants and technology transfers have resulted in
the creation of thousands of new independent private sector companies.
The race to find better treatments and a cure for cancer,
Alzheimer's, heart disease, HIV/AIDS, and other diseases, and for
controlling global epidemics like AIDS, tuberculosis, coronavirus, and
malaria, all depend on a robust long-term investment strategy for
health research at NIH. There can be no innovation without reliable and
adequate research funding. Congress should ensure the nation does not
delay vital HIV/AIDS research progress. We must protect HIV/AIDS
research funding to sustain research capacity and maintain our
worldwide leadership in HIV/AIDS research and innovation.
To that end, we urge the subcommittee to consider a needed increase
to the overall FY 2022 budget request level of at least $46.1 billion
for the National Institutes of Health (NIH) consistent with the request
of the Ad Hoc Group for Medical Research. While this increase may get
us closer to meeting the OAR By-Pass Budget Estimate for FY 2022, we
ask the committee direct that increased funding be allocated for HIV
research at the NIH in FY 2022. We urge the subcommittee to consider
approaches to ensure the HIV research budget receives increases
alongside other important and intersecting biomedical research at NIH.
In conclusion, the RWG calls on Congress to continue the bipartisan
federal commitment towards combating HIV as well as other chronic and
life-threatening illnesses by increasing funding for NIH in FY 2022. A
meaningful commitment towards maintaining the U.S. pre- eminence in HIV
research and fostering innovation cannot be met without prioritizing
the research investment at NIH that will lead to tomorrow's lifesaving
vaccines, treatments, and cures that are needed to end the HIV epidemic
here and abroad. Thank you for the opportunity to provide these written
comments.
______
Prepared Statement of the Federation of American Societies for
Experimental Biology
My testimony is in support of FY22 funding for the National
Institutes of Health under the Department of Health and Human Services
, Agency Subdivision: National Institutes of Health, Account: 550.
summary
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--in the
development of COVID-19 vaccines, and pre-clinical research, such as
animal studies, has been essential to every step of achieving 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 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\
---------------------------------------------------------------------------
\1\ NSF Science Indicators 2018.
\2\ STEM and the American Workforce. You've heard it before: STEM
jobs--... | by Science is US | Medium.
---------------------------------------------------------------------------
The federal government should commit to robust, predictable, and
sustained funding increases for science agencies.
national institutes of health
The NIH is the nation's largest funder of biomedical research,
providing competitive grants to support the work of 300,000 scientists
at universities, medical centers, independent research institutions,
and companies nationwide. NIH supports biomedical discoveries,
innovations, and treatments that were made possible because of
scientific research using animals.
Congress has renewed its commitment to this critical research
agency, providing robust, sustained, and predictable budget increases
over the last five fiscal years (Table 1).\3\ With these resources, NIH
has accelerated progress across all areas of medical science, including
regenerative medicine, cancer immunotherapy, and neurological
health.\4,5,6\ The agency is also committed to supporting the next
generation of our biomedical research enterprise.\7\
---------------------------------------------------------------------------
\3\ FASEB Federal Funding Data.
\4\ NIH Regenerative Medicine Innovation Project, National
Institutes of Health, Bethesda, MD.
\5\ NCI's Role in Immunotherapy Research, National Cancer
Institute, Bethesda, MD.
\6\ The BRAIN Initiative Summary, National Institutes of Health,
Bethesda, MD.
\7\ NIH Grants and Funding, Next Generation Research Initiative,
National Institutes of Health, Bethesda, MD.
---------------------------------------------------------------------------
Though the NIH is in a stronger position than it was a few years
ago, Congress must continue to increase biomedical research funding.
Our nation is confronting public health threats, especially given
global climate change negatively impacting biodiversity and geohealth--
the intersection of biological science, Earth sciences, and ecology--on
mankind. More research will be needed to address increased risks posed
by future pandemics, infectious diseases, and greater exposure to
environmental pollutants.\8\
---------------------------------------------------------------------------
\8\ IPCC AR5 Climate Change 2014, Chapter 11: Human Health:
Impacts, Adaptation, and Co-Benefits.
---------------------------------------------------------------------------
In the U.S., we continue to address the needs of an aging
population and obesity.\9,10\ NIH research is developing therapies for
a whole spectrum of age-related disorders.\11\ Obesity impacts 42% of
the U.S. population and increases the likelihood of developing costly
medical conditions.\12\
---------------------------------------------------------------------------
\9\ https://www.census.gov/newsroom/press-releases/2018/cb18-41-
population-projections.html.
\10\ NIDDK Health Information.
\11\ Aging Well in the 21st Century: Strategic Directions for
Research on Aging, National Institute on Aging, Bethesda, MD.
\12\ CDC Obesity Data.
---------------------------------------------------------------------------
Our recommendation of $46.11 billion is $3.2 billion above FY 2021
allowing NIH to continue support for the Next Generation Researchers
Initiative; provide a five percent increase across NIH institutes and
centers; and expand dual purpose research in biomedicine and
agriculture among NIH and other federal agencies.\13\
---------------------------------------------------------------------------
\13\ BILLS-116RCP68-JES-DIVISION-H.pdf (house.gov) pg. 63.
---------------------------------------------------------------------------
FASEB FY 2022 Recommendation: at least $46.11 billion for NIH
(chart below):
[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 (FY)
2022. FABBS represents twenty-seven scientific societies and over sixty
university departments whose members and faculty share a commitment to
advancing knowledge of the mind, brain, and behavior. For fiscal year
(FY) 2022, FABBS encourages your subcommittee to provide the National
Institutes of Health (NIH) with a budget of at least $52 billion and
the Institute of Education Sciences (IES) within the Department of
Education a budget of $700 million.
Our members are thankful that appropriators were able to secure
$42.9 billion for NIH and over $646 million for IES in FY21. We also
appreciate the supplemental appropriations to NIH and IES included in
COVID-19 response legislation. At NIH, these funds have played a
central role in the pandemic response, not only developing vaccines and
treatments but also supporting behavioral research to inform public
health strategies. At IES, these investments are already helping to
conduct essential research into the learning disruptions caused by the
pandemic and providing educators the tools to chart a path forward for
students. We hope to see similar success funding these agencies' vital
contributions in FY22.
national institutes of health
We sincerely thank the Subcommittee for its diligent work and
considerable increases to NIH in recent years. As members of the Ad Hoc
Group for Medical Research and the Coalition for Health Funding, FABBS
recommends at least $52 billion for NIH in FY 2022. FABBS members
contribute to the NIH mission of seeking fundamental knowledge about
the behavior of living systems and the application of that knowledge to
enhance health, lengthen life, and reduce illness and disability. FABBS
members contribute to the advances in numerous NIH Institutes and
Centers (IC).
FABBS members have a particular interest in the Office of
Behavioral and Social Science Research. OBSSR was created to coordinate
and promote 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 an integral component of many high-profile NIH programs and
initiatives:
--OBSSR has played a role in the fight against COVID-19, supporting
behavioral and social science research to address the pandemic
and disseminating best practices to encourage uptake of COVID-
19 vaccines. The Office, for example, has made over 50 awards
to study mitigation efforts, the long-term health and health
care effects of the resulting economic downturn, and potential
interventions to limit these effects.
--The Office also coordinates NIH's high-priority program on gun
violence prevention research, identifying effective public
health interventions to prevent firearm violence, and the
trauma, injuries, and mortality resulting from it.
--Additionally, OBSSR is central to the NIH UNITE initiative to end
structural racism and racial inequalities in health research. A
working group of the Behavioral and Social Sciences Research
Coordinating Committee is responsible for examining OBSSR-
funded research on racism and health to inform broader agency-
wide efforts to promote inclusion within NIH and in the
research it funds.
While the NIH budget has grown in recent years, funding for OBSSR
has not seen commensurate increases. We recognize that, located in the
Office of the Director, OBSSR does not have a specific appropriation.
Nonetheless, FABBS appreciates the opportunity to express support for
OBSSR and highlight that additional funding should enable the Office to
expand its work addressing the behavioral, social, and economic impacts
of the COVID-19 pandemic, measuring the effects of mitigation
strategies on vulnerable individuals and communities in preparation for
future pandemics, while maintaining its broad work in support of the
NIH mission.
institute of education sciences (ies), u.s. department of education
As members of the Friends of IES, FABBS encourages the subcommittee
to appropriate at least $700 million to IES in FY 2022. At this
critical juncture, a significant increase in IES funding is essential
to addressing learning loss caused by the COVID-19 pandemic and better
preparing American students for the future.
IES is a semi-independent, nonpartisan branch of the U.S.
Department of Education and is the research foundation for improving
and evaluating teaching and learning. The four centers-the National
Center for Education Statistics (NCES), National Center for Education
Research (NCER), National Center for Special Education Research (NCSER)
and National Center for Education Evaluation (NCEE)-work
collaboratively to efficiently and comprehensively produce and
disseminate rigorous research and high-quality data and statistics.
Already, the Institute has done important work to gauge the impact
of school closures on students, teachers, and school leaders, while
providing evidence-based guidance and technical assistance to inform
school reopening plans and support instruction in remote and hybrid
learning. IES launched Operation Reverse the Loss to identify specific
and actionable interventions that can reverse learning losses for
clearly identified populations of students.
Robust funding for IES in FY22 will allow the Institute to continue
its important work studying the effects of and developing strategies to
address learning loss due to COVID-19 and create a stronger educational
system.
Thank you for considering this request.
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, International Congress of Infant Studies, International
Society for Developmental Psychobiology, Massachusetts
Neuropsychological Society, 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 University; California State
University, Fullerton; Carnegie Mellon University; Columbia University;
Cornell University; Duke University; East Tennessee State University;
Florida International University; Florida State University; George
Mason University; George Washington University; Georgetown University;
Georgia Institute of Technology; Harvard University; Indiana University
Bloomington; Indiana University--Purdue University Indianapolis; Johns
Hopkins University; Kent State University; Lehigh University;
Massachusetts Institute of Technology; Michigan State University; New
York University; North Carolina State University; Northeastern
University; Northwestern University; The Ohio State University, Center
for Cognitive and Brain Sciences; Pennsylvania State University;
Princeton University; Purdue University; Rice University; Southern
Methodist University; Stanford University; Syracuse University; Temple
University; Texas A&M University; Tulane University; University of
Arizona; University of California, Berkeley; University of California,
Davis; University of California, Irvine; University of California, Los
Angeles; University of California, Riverside; University of California,
San Diego; University of Chicago; University of Colorado, Boulder;
University of Delaware; University of Houston; University of Illinois
at Urbana-Champaign; University of Iowa; University of Maryland,
College Park; University of Massachusetts Amherst; University of
Michigan; University of Minnesota; University of Minnesota, Institute
of Child Development; University of North Carolina at Greensboro;
University of Pennsylvania; University of Pittsburgh; University of
Texas at Austin; University of Texas at Dallas; University of
Washington; Vanderbilt University; Virginia Tech; Wake Forest
University; Washington University in St. Louis; Yale University
[This statement was submitted by Juliane Baron, Executive Director,
Federation of Associations in Behavioral and Brain Sciences.]
______
Prepared Statement of Florida A&M University
Chairman Leahy, Chair 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) 2022 appropriations bill. Florida A&M University (FAMU)
supports maintaining or enhancing funding for programs of interest to
the University and our students, including the Department of
Education's Historically Black Colleges and Universities (HBCU)
programs, the HBCU Capital Financing Program, and the federal Pell
Grants program. FAMU also supports two programs at the Department of
Health and Human Services--the National Institutes of Health's Research
Centers in Minority Institutions and the Health Resources and Services
Administration's Health Careers Opportunity Program. These federal
programs provide critical support to the University, our students as
well as other institutions of higher education and the nation.
Florida A&M University, based in the State capitol of Tallahassee,
Florida, was founded in 1887 with only 15 students and two instructors.
Today, FAMU has grown to nearly 10,000 students and we are proud to be
the highest ranked among public Historically Black Colleges and
Universities (HBCU) according to the U.S. News and World Report
National Public Universities. Our University offers 56 bachelor's
degrees, 29 master's degrees, 12 doctoral degrees and three
professional degrees. We are a leading land-grant research institution
with an increased focus on science, technology, research, engineering,
agriculture, and mathematics. As noted by Diverse Issues, FAMU is a top
producer of African American doctoral degrees in pharmacy and
pharmaceutical sciences.
Federal support is critical for institutions of higher education,
particularly HBCUs, which are historically under-resourced. Robust
federal funding for programs that help to improve our institutions,
broaden access for students, and improve student success is paramount.
The Department of Education HBCU programs help us achieve these goals
and the federal Pell Grant program is an imperative resource for our
students as the majority of our students are Pell-eligible.
Furthermore, the Department of Health and Human Services' research and
career development programs that support minority students also benefit
FAMU, our students, and the nation. FAMU strongly supports funding for
these vital federal programs.
department of education historically black colleges and universities
programs
FAMU strongly supports robust funding for the Department of
Education HBCU programs under the Higher Education, Aid for
Institutional Development Programs account. These programs, authorized
under Title III of the Higher Education Act, provide critical support
to higher education institutions that enroll large proportions of
minority and financially disadvantaged students. One of the primary
missions of the Title III programs has been to support the nation's
HBCUs. The Strengthening Historically Black Colleges and Universities
program and the Historically Black Graduate Institutions program
provide FAMU and other HBCUs with formula grants to help strengthen our
academic, administrative, and fiscal capabilities.
The President's FY 2022 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. In FY 2019, FAMU received $7 million under the program.
We also support the President's FY 2022 budget request of $102.3
million for the Strengthening Historically Black Graduate Institutions,
which funds five-year grants to provide for scholarships for
disadvantaged students, academic and counseling services to improve
student success, and supports infrastructure and facilities
improvements. FAMU received $3.8 million under the current five-year
grant period for this program.
FAMU, like other HBCUs, has a critical need for funding to support
equipment upgrades and purchases, construction and renovation of our
facilities, and development of our academic programs. This includes a
wide variety of projects to strengthen the University and its programs,
such as expansion of our online education offerings to enhance pathways
to degree attainment, upgrading our information technology
infrastructure, construction of laboratories, research and education
facilities, and upgrading our health sciences and technology equipment
and facilities. Continued funding for these HBCU programs and other Aid
for Institutional Development programs is essential to postsecondary
institutions, like FAMU, that educate the nation's minority students.
department of education historically black colleges and universities
capital financing program
FAMU supports maintaining the FY 2021 enacted level of $48.848
million for the Department of Education's HBCU Capital Financing
Program, which provides low-cost capital to finance improvements to the
infrastructure of the nation's HBCUs. Specifically, the program
provides accredited HBCUs with access to capital financing or
refinancing for the repair, renovation, and construction of classrooms,
libraries, laboratories, dormitories, instructional equipment, and
research instrumentation.
FAMU, like other HBCUs, has a critical need to upgrade and
rehabilitate our aging facilities. This program makes capital available
for HBCUs to improve our academic facilities, which will enhance the
learning experience for our students. The requested funding would be
used to pay the loan subsidy costs in guaranteed loan authority under
the program. We urge the Subcommittee to maintain the current level of
funding for FY 2022, which will allow HBCUs to continue to refinance
previous capital project loans, renovate existing facilities, or build
new facilities to improve our institutions.
department of education pell grant program
FAMU supports robust funding for the Pell Grant program under the
Department of Education's Student Financial Assistance account. The
federal Pell Grant program, authorized by Title IV of the Higher
Education Act, is the largest source of federal grant aid supporting
college students. The Pell Grant Program provides need-based grants to
low-income undergraduate students to promote access to postsecondary
education.
For 2017-2018, there were 5,543 Pell Grant recipients attending
FAMU, amounting to $27.7 million in Pell Grant awards. Over 60% of our
enrolled students rely on Pell grants to attend our institution. Given
the ongoing coronavirus crisis, which will have devastating impacts on
the economy for the foreseeable future, we expect that our current and
prospective students will be dependent on financial assistance,
including Pell Grants, in order to continue pursuing their
postsecondary education goals.
The President's FY 2022 budget requests $25.475 billion for
Discretionary Pell Grants and proposes an increase in the maximum award
to $8,370 in academic year 2021-2022. FAMU would encourage Congress to
support the President's budget request substantially increasing the
total maximum Pell grant award in FY 2022 to 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.
national institutes of health research centers in minority institutions
FAMU supports funding at the FY 2022 President's budget request of
$80 million for the NIH National Institute on Minority Health and
Health Disparities (NIMHD), Research Centers in Minority Institutions
(RCMI) Program. The RCMI Program, established in 1985, supports
critical infrastructure development and scientific discovery in
historically minority graduate and health professional schools. The
program serves the dual purpose of bringing more racial and ethnic
minority scientists into mainstream research and promoting minority
health research because many of the investigators at RCMI institutions
study diseases that disproportionately affect minority populations. The
RCMI Program develops and strengthens the research infrastructure
necessary to conduct state-of-the-art biomedical research and foster
the next generation of researchers from underrepresented populations.
Since program inception, the FAMU RCMI Center has received over $85
million from NIH, which has provided critical infrastructure to enable
the College 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. Moreover, as an outcome of the 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 (hrsa), health careers opportunity program
FAMU supports the President's budget request of $15 million for
HRSA's Health Careers Opportunity Program (HCOP). First authorized in
1972, the HCOP competitive grant program aims to provide individuals
from disadvantaged backgrounds an opportunity to develop the skills
needed to successfully compete for, enter, and graduate from health or
allied health professions schools. HCOP focuses on three key milestones
of education: high school completion; acceptance, retention and
graduation from college; and acceptance, retention and completion of a
health professions degree program. The ultimate goal of the HCOP
program is to diversify the health professions workforce by narrowing
the educational achievement gaps between individuals from higher-income
and lower-income households.
The Health Careers Opportunity Program (HCOP) High School Summer
Institute, conducted on FAMU's campus, is designed for high school
students interested in pursuing a career in a health profession. The
four-week program provides a wide-range of educational and social
experiences for rising 10th, 11th and 12th grade students. The entire
experience is designed to enhance participants' academic abilities,
social skills, and other competencies to increase their competitiveness
for admission to a post-secondary health professions program.
The President's FY 2022 budget maintains funding for HRSA's Health
Workforce, Training for Diversity Programs, including the HCOP.
Continued funding is critical for these programs that help to increase
the supply of underrepresented minorities in health professions.
We urge the Subcommittee to support continued and/or enhanced
funding for these critical education programs at the Departments of
Education and Health and Human Services. We thank you for your
continued support of federal postsecondary initiatives that not only
directly benefit the University and our students, but the region and
the nation as well. Thank you for your consideration.
[This statement was submitted by Larry Robinson, Ph.D., President,
Florida A&M University.]
______
Prepared Statement of the Fred Hutchinson Cancer Research Center
The Fred Hutchinson Cancer Research Center (Fred Hutch) is grateful
to Congress for providing robust, reliable funding for the National
Institutes of Health (NIH), a key national priority. The nation's
investment in NIH research pays a lifetime of dividends in better
health and improved quality of life for all Americans. The impact of
the COVID-19 pandemic on the nation has demonstrated the importance of
a well-funded research enterprise. Thanks to decades of strong
congressional support for NIH, the scientific community was well-
equipped to rapidly respond to COVID-19. In fiscal year (FY) 2022, Fred
Hutch recommends at least $46.1 billion for the NIH. As the research
enterprise recovers from pandemic-related disruptions, now, more than
ever, it is essential to continue the trend of recent budget increases
to NIH to support lifesaving research.
Through strong, bipartisan leadership over the last six budget
cycles, the Appropriations Subcommittee on Labor, Health and Human
Services, Education and Related Agencies (Labor-HHS) has helped the NIH
regain lost ground after a period of effectively flat budgets. In the
FY 2021 omnibus bill, the Subcommittee's leadership continued this
trajectory by providing a substantial increase to all NIH institutes
and centers in addition to supplemental funding dedicated to COVID-19
research.
The federal investment in biomedical research has yielded a
significant number of scientific advances that improve health outcomes
for patients. Fred Hutch is committed to working with Labor-HHS,
Congress and the Administration to further bipartisan support for
increasing federal investment in biomedical science and ensuring NIH
remains a top priority in FY 2022. Because of NIH funding, Fred Hutch
can pursue fearless science and collaborations across its five
scientific divisions.
Founded in 1975, Fred Hutchinson Cancer Research Center is guided
by a mission to eliminate cancer and related diseases as causes of
human suffering and death. Fred Hutch's interdisciplinary teams of
world-renowned scientists and humanitarians work together to prevent,
diagnose, and treat cancer, HIV/AIDS and emerging infectious diseases.
Our Nobel Prize winning discoveries began in the 1970s with Dr. E.
Donnall Thomas' work in bone marrow transplantation, providing the
first definitive and reproducible example of the power of the human
immune system's ability to cure cancer. The leadership, depth and
breadth of Fred Hutch's transdisciplinary research makes the center one
of the National Cancer Institute's 51 designated Comprehensive Cancer
Centers, serving patients in five northwestern states.
In addition to groundbreaking discoveries in science, Fred Hutch is
investing in research to help narrow health inequities, implementing
initiatives that embrace diversity and inclusion in science and
empowering early career researchers. Below are some examples of how NIH
funding fuels Fred Hutch innovation and fosters future generations of
scientists:
--Responding to COVID-19. Researchers across Fred Hutch have moved at
lighting speed to test and develop potential therapies and
vaccines, increase and expand testing capacity, model the
course of the pandemic and emerging variants and study the
molecular interactions between SARS-CoV-2 and the human body.
Utilizing the expertise and clinical infrastructure of the HIV
Vaccine Trials Network (HVTN), headquartered at Fred Hutch, the
center also leads operations for the COVID-19 Prevention
Network (CoVPN), funded by the National Institute of Allergy
and Infectious Diseases, and co-leads the five large-scale
COVID-19 vaccine efficacy trials with over 200 clinical trial
sites in the U.S. and abroad.
--Mitigating Health Inequities. Fred Hutch understands the importance
of community engagement to overcome the pandemic and the HVTN's
community engagement experts have worked tirelessly for
inclusive and diverse participation in each of the CoVPN's
30,000 person vaccine trials. In just six months, the team
registered nearly 600,000 volunteers and has expanded
recruitment to volunteers for pediatric COVID-19 trials, long
COVID, and anticipated trials testing vaccines for variants.
Fred Hutch is also utilizing the decades-long work of its
public health scientists to disrupt the flood of misinformation
during the pandemic, so underrepresented communities receive
reliable, scientifically sound and understandable information
about COVID-19 and the vaccines.
--Embracing Diversity and Inclusion in Science. Fred Hutch recognizes
the importance of programs that promote diversity, equity and
inclusion. As the first U.S. Cancer Center to commit to the CEO
Action for Diversity & Inclusion plan and a member of the
Washington Employers for Racial Equity, Fred Hutch strives to
establish itself as a national exemplar in academia for its
Diversity, Equity and Inclusion (DEI) approaches and practices.
DEI is integrated as core values, principles and practices in
Fred Hutch's approach to research, its workforce development,
workplace culture and the communities Fred Hutch engages with.
The NIH's emphasis on DEI, including the Agency's DEI
initiative, UNITE and the FIRST faculty cohort program for
early career researchers are instrumental in ensuring the most
creative minds have the opportunity to contribute to the
nation's research and health goals. Congress' continued support
of the NIH funds vital efforts to increase representation and
promote varied perspectives throughout the entire biomedical
research enterprise.
--Empowering Early Career Researchers. Fred Hutch is inspiring the
next generation of researchers who will work at the frontiers
of life sciences. The center invests $2 million annually on
science education programs ranging from internship
opportunities for high school and college students, to
development resources and mentorship for graduate students,
postdoctoral fellows and early career faculty. The COVID-19
pandemic had an acute impact on these early career researchers,
and it revealed the need for a well-trained, motivated
scientific workforce. Ongoing investment in the NIH improves
the quality and cultural proficiency of science by increasing
access to scientific research and prepares young scientists to
become tomorrow's leaders.
The federal government has an irreplaceable role in supporting
biomedical research. No other public, corporate or charitable entity is
willing or able to provide the broad and sustained funding for cutting-
edge research that catalyzes innovative breakthroughs. The partnership
between NIH and America's research institutions and scientists is
highly productive.
As an independent research institute (IRI) with a mission to
eliminate cancer and related diseases, Fred Hutch depends on NIH
funding to conduct basic, translational, clinical, public health and
infectious disease research, and to respond quickly to the research
needs of the country. In addition to supporting robust funding, Fred
Hutch opposes provisions--such as directives to reduce salary support
for extramural researchers--which would harm the appeal of academic
research and disproportionately affect IRIs. Policies to cut salary
support undermine Fred Hutch's ability to recruit and retain the
talented researchers who keep U.S. institutions at the vanguard of
biomedical sciences.
Robust increases to the NIH budget do more than bolster important
research programs; it secures the future of science. Budget increases
enable initiatives that reduce barriers to academia, provides training
and education for young scientists starting independent careers and
encourages culturally inclusive research. Fred Hutch supports these
initiatives and principles and is applying them to its own workplace
and research pursuits.
Fred Hutch thanks the Labor-HHS Subcommittee for its leadership and
dedication to ensuring the health of the nation and your unwavering
support for NIH funding in FY 2022. We appreciate the opportunity to
urge the Subcommittee to provide at least $46.1 billion in FY 2022 for
NIH. Advances in bioscience, technology and data science have given the
life sciences tremendous momentum. This is not a time to pull back.
Given the abundance of scientific opportunity, this recommendation
represents a minimum investment to sustain progress that would be
amplified through an even more robust commitment.
[This statement was submitted by Thomas J. Lynch Jr., MD, President
and
Director, Fred Hutchinson Cancer Research Center.]
______
Prepared Statement of the Fred Hutchinson Cancer Research Center
Dear Senator Murray,
I am writing in support of the FY 2022 budget request for the
Department of Health and Human Services (DHHS) to develop a strategic
plan and national strategy for herpes simplex virus requested by Herpes
Cure Advocacy, an international patient-oriented nonprofit group
dedicated to alleviate the morbidity and mortality from herpes simplex
virus type-1 & type 2 (HSV-1 & HSV-2). While HSV as an infectious
disease is more than worthy of a public health research effort to
develop vaccines and curative therapies, recent work has suggested HSV
may also be a major player in Alzheimer's disease. Specifically, the
strategic plan and national strategy will request $2.5 billion from the
NIH and CDC over the next 3 years to address the immediate and critical
need for research into prevention, treatment and cure options to end
this silent pandemic of herpes simplex infections in our country.
I have been an advocate and investigator on herpesviruses for over
40 years, having founded the first patient advocacy group for genital
herpes (THE HELPER). Over 400 million new cases of genital herpes occur
each year. The disease is underappreciated due to its asymptomatic
spread, and in the normal host, HSV-2 mucosal ulcerations are normally
self-limited. However, systemic complications such as recurrent
meningitis, hepatitis, and pneumonitis occur during acquisition or
reactivation of infection, particularly among patients with poor T-cell
immunity due to AIDS, organ transplantation or chemotherapy. The major
complication of HSV worldwide is it increases the risk of HIV
acquisition 3-4 fold. The HIV prevention literature indicates that 40%
of HIV acquisitions are HSV-related; thus, 420,000 of the 1.2 million
new HIV cases yearly.
Recent epidemiological observations suggest many causes of
Alzheimer's disease are HSV-1-related. This is a plausible hypothesis
as HSV resides in the brain and the concept is that its presence
spreads the development of the protein plaques associated with
Alzheimer's. There are suggestions that treating HSV early may slow
progression of Alzheimer's. Better research is needed to define this
and see if novel therapies can be developed. The first antiviral drug--
acyclovir--invented by Dr. Gertrude Elion, one of the first women
scientists to receive a Nobel Prize, was developed in the early 1980s.
I was lucky enough to be a disciple of Dr. Elion and did the first
studies of the drug for genital herpes. It paved the way for HIV drugs,
yet it's 40 years later and we have the tools to make better drugs and,
more importantly, vaccines; vaccines to provide a cure and vaccines to
prevent HSV from being acquired. Imagine a vaccine that reduces HIV and
Alzheimer's disease. This is possible by preventing HSV infection.
One thing the COVID-19 pandemic has done is brought the injustice
and inequality of health care and resources for infectious diseases to
light in a way not previously advertised. We are at a crossroads now
with great levels of advocacy and the ability to make real change with
new technologies to tackle these silent epidemics.
Sincerely.
[This statement was submitted by Lawrence Corey, MD, Past President
and
Director, Fred Hutchinson Cancer Research Center.]
______
Prepared Statement of the Friends of the Health Resources and Services
Administration
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 $9.2 billion for the Health Resources
and Services Administration in FY 2022. We are grateful for the
increases provided for HRSA programs in FY 2021 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's programs also work in collaboration across the federal
government to enhance health outcomes. For example, HRSA's HIV/AIDS
Bureau partners with the Office of the Assistant Secretary for Health,
the Centers for Disease Control and Preventions, the Substance Abuse
and Mental Health Services Administration, the Centers for Medicare and
Medicaid Services, the Indian Health Services, the National Institutes
of Health, the Agency for Healthcare Research and Quality, the
Department of House and Urban Development, the Department of Veterans
Affairs and the Department of Justice to ensure an effective use of
resources, and a coordinated and focused public health response to the
HIV epidemic. This federal response has contributed to the number of
annual diagnosed HIV infections dropping 7 percent between 2014 and
2018, with HRSA's Ryan White HIV/AIDS Program serving as the foundation
for delivering health care and support services to reach the public
health goal of ending the HIV epidemic. Despite this success, an
estimated 1.2 million people in the U.S. are living with HIV today, and
approximately 36,400 become newly infected every year--1 in 7 of whom
are unaware of their infection. HRSA programs will play an integral
role in achieving the public health goal of ending the HIV epidemic.
HRSA grantees also play an active role in addressing emerging
health challenges. For example, HRSA's grantees provide outreach,
education, prevention, screening and treatment services for populations
affected by health emergencies such as the opioid epidemic. However,
much of this work required additional funding to increase capacity in
health centers, support National Health Service Corps providers to
deliver relevant care and expand rural health services. Strong,
sustained funding would allow HRSA to quickly and effectively respond
to emerging and unanticipated future health needs across the U.S.,
while continuing to address persistent health challenges.
HRSA programs and grantees are providing innovative and successful
solutions to some of the nation's greatest 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 2021 and provide at least $9.2 billion for HRSA's
total discretionary budget authority in FY 2022. Additional funding
will allow HRSA to pave the way for new achievements and continue
supporting critical HRSA programs, including:
--Primary care programs support nearly 13,000 health center sites in
every state and territory, improving access to preventive and
primary care for nearly 30 million people in geographic areas
with few health care providers. Health centers coordinate a
full spectrum of health services including medical, dental,
vision, behavioral and social services in the nation's most
underserved communities. Health centers reach 1 in 3 people
living at or below the federal poverty line; 1 in 5 rural
residents; 1 in 4 uninsured persons; and 1 in 8 children.
--Health workforce programs at HRSA support 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.
--Maternal and child health programs, including the Title V Maternal
and Child Health Block Grant, Healthy Start and others, support
initiatives designed to promote optimal health, reduce
disparities, combat infant and maternal mortality, prevent
chronic conditions and improve access to quality health care
for mothers and babies. MCH programs help assure that nearly
all babies born in the U.S. are screened for a range of serious
genetic or metabolic diseases, and that coordinated long-term
follow-up is available for babies with a positive screen. They
also help improve early identification and coordination of care
for children with sensory disorders, autism and other
developmental disabilities. The MCH Block Grants funded 59
states and jurisdictions to provide health care and public
health services for an estimated 60 million people, reaching
92% of pregnant women, 98% of infants, and 60% of children
nationwide.
--HIV/AIDS programs provide the largest source of federal
discretionary funding assistance to states and communities most
severely affected by HIV/AIDS. The Ryan White HIV/AIDS Program
delivers comprehensive care, prescription drug assistance, and
support services to more than 519,000 people impacted by HIV/
AIDS. HRSA's Ryan White HIV/AIDS Program effectively engages
clients in comprehensive care and treatment, including
increasing access to HIV medication, which has resulted in
88.1% of clients achieving viral suppression, compared to just
64.7% of all people living with HIV nationwide. Additionally,
the program provides education and training for health
professionals treating people with HIV/AIDS, and works toward
addressing the disproportionate impact of HIV/AIDS on
communities of color.
--Title X ensures access to a broad range of reproductive, sexual and
related preventive health services for over 3.1 million women,
men and adolescents, with priority given to low-income
individuals. Services include patient education and counseling
for family planning; provision of contraceptive methods;
cervical and breast cancer screenings; sexually transmitted
disease prevention education, testing and referral; and
pregnancy diagnosis. This program helps improve maternal and
child health outcomes and promotes healthy families.
--Rural health programs improve access to care for people living in
rural areas. The Office of Rural Health Policy serves as the
nation's primary advisor on rural policy issues, conducts and
oversees research on rural health issues and administers grants
to support health care delivery in rural communities. Rural
health programs support community-based disease prevention and
health promotion projects and expand health information
technology and telehealth.
--Special programs include the Organ Procurement and Transplantation
Network, the National Marrow Donor Program, the C.W. Bill Young
Cell Transplantation Program and National Cord Blood Inventory.
These programs facilitate organ marrow and cord blood donation,
support transplantation and research and increase organ
donation rates. The Poison Control Program oversees poison
control centers which contribute to decreasing a patient's
length of stay in a hospital and save the government $1.8
billion each year in medical costs and lost productivity.
--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 providers who offer COVID-19 care to
uninsured individuals.
To meet the many ongoing public health challenges facing the
nation, including those outlined above, we urge you to support at least
$9.2 billion for HRSA's programs in FY 2022.
[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 consortium of scientific and
professional societies, research universities, and independent research
organizations committed to supporting the mission of IES and the use of
research and statistics. We recommend $737.47 million for the Institute
of Education Sciences (IES) in the FY 2022 Labor, Health and Human
Services, and Education Appropriations bill. This request is aligned
with the top line amount included for IES in the president's budget
request.
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. Throughout the pandemic, IES has
sought to meet the demand for evidence-based resources to help
facilitate remote instruction, address academic and socioemotional
needs of students, and support teachers and school leaders in adapting
to the ever-changing conditions resulting from the pandemic.
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.
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 on our most
marginalized populations.
At the same time, IES remains constrained in its flexibility to
fully fund emerging research areas and scale up promising interventions
and resources. Only one of every ten grant proposals receives funding
support, limiting the ability of IES to tackle pressing questions in
education, such as what can be done to support student learning in
informal settings, address challenges facing rural districts, and
improve literacy for adult learners. Additional investment in Research,
Development, and Dissemination could support new high-risk, high-reward
research with the potential for transforming education, along with
funding research in foundational and emerging areas in education and
supporting 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
compiles and disseminates important, trustworthy, and scientifically
valid data on the condition of education that is essential to policy,
practice, and research being conducted across the nation. Most
recently, NCES' pivoting and partnering with the Census Bureau and four
other federal statistical agencies to get weekly estimates of the
impact of COVID-19 is just one palpable example of its vital role.
Sufficient funding for NCES can enhance the ability of NCES to develop
and administer surveys, 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), providing critical
investment for states to link K-12, postsecondary, and workforce
systems to gain a better understanding of education and workforce
outcomes. IES is also promoting the research use of SLDS to measure the
effects of interventions on long-term student outcomes. 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. 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. COVID-19 has had a
disproportionate impact on students with or at-risk of disabilities who
have faced significant barriers to educational access over the past
year. Although funding from the American Rescue Plan will support such
research in an FY 2022 grant competition, NCSER will not hold a
competition for non-pandemic-related research due to limited funding.
With additional funding, NCSER could support data and evidence-based
resources to guide teachers, administrators, and policymakers in state
and local agencies.
Alongside the recommendation regarding the investment in IES, we
encourage you to include language in the Program Administration line to
allow for IES to hire additional staff. Understanding that the
Department of Education approves hiring authority, IES can be more
innovative and flexible in carrying out its mission and support
emerging areas of research and statistical collection with additional
staff. As one example, NCES staff have technical expertise but are also
responsible for managing contracts for its surveys. Providing authority
for NCES to hire more staff can allow the agency to fully discharge its
responsibilities, including the integration of new forms of massive and
fast data. To execute these functions effectively requires staff of
adequate size.
To this end, we recommend that the Committee provide IES $737
million in FY 2022. As our country emerges from a year of the greatest
national disruption our schools have ever seen, it is clear that there
is a demand for evidence-based resources for our teachers, school
leaders, students, and families to support learning and instruction. A
commitment at this level will enable IES to more fully support research
that addresses the challenges of preparing young Americans to succeed
in the knowledge-based economy that is not only upon us now, but also
the key to future American prosperity.
[This statement was submitted by Felice J. Levine, Chair, Friends
of the Institute of Education Sciences.]
______
Prepared Statement of the Friends of the National Institute of Child
Health and Human Development
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
welfare 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 no less than $1.7 billion in Fiscal Year (FY) 2022,
an increase of $117 million over FY 2021. We also respectfully ask the
subcommittee to maintain its commitment to increasing funding for the
National Institutes of Health (NIH) by providing no less than $46.1
billion in FY 2022.
We are pleased to support the extraordinary achievements of NICHD
in meeting 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. With these
necessary resources, NICHD can ensure proportional growth to that of
its counterpart institutes and build upon the initiatives we've listed
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. NICHD also
continues to advocate for inclusion of its key populations in major
trans-NIH programs like the Rapid Acceleration of Diagnostics (RADx)
initiative.
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 are at an unprecedented high
in the United States and significant racial and ethnic disparities
persist. Research to better understand the mechanisms of disparities,
to include social determinants of health and genetic factors that
adversely affect pregnancy outcomes, are vitally needed.
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. We urge continued funding for this research and for
training the next generation of pediatric clinical investigators. 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, including cost effectiveness comparisons, 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 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 represent a major public health burden with high prevalence,
impaired quality of life and substantial economic costs affecting 25%
of American women. 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): We urge Congress to continue its strong support of the
NICHD-led PRGLAC Task Force, and to support the recommendations
contained in the report to achieve broader inclusion of pregnant and
lactating women in research and expansion of the workforce of
clinicians and researchers with expertise in obstetric and lactation
pharmacology and therapeutics, so that lifesaving treatments for this
population are known to be safe and effective.
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 the understanding and
treating this class of disorders that affect so many. We urge resources
and support for the IDDRCs for research infrastructure and expansion 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.
Male Infertility: Male infertility is another relevant area of
inquiry that would benefit from 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 KJ Hertz, 2021 Chair, Friends of
the National Institute of Child Health and Human Development.]
______
Prepared Statement of the Friends of the National Institute of Diabetes
and Digestive and Kidney Diseases
On behalf of the 35 patient, physician, and research organizations
that are members of the Friends of the National Institute of Diabetes
and Digestive and Kidney Diseases (NIDDK), we want first to thank you
for your ongoing bipartisan investment in the National Institutes of
Health (NIH). We ask you to support our FY 2022 NIH funding
recommendation of at least $46.111 billion, a $3.177 billion increase
over the comparable FY 2021 funding level for the NIH, which would
allow for the NIH's base budget to keep pace with the biomedical
research and development price index of 2.3% and allow meaningful
growth of 5%. We also request a proportionate increase for the NIDDK of
at least $157 million for a total of $2.289 billion in FY 2022. This
level of increase over its FY 2021 funding is necessary for NIDDK to
fulfill its mission to conduct and support medical research, research
training, and to disseminate science-based information on diabetes and
other endocrine and metabolic diseases; digestive diseases, nutritional
disorders, and obesity; and kidney, urologic, and hematologic diseases
and to support the Institute's multi-pronged efforts toward the goal of
health equity. We also strongly encourage you to provide supplemental
emergency funding of $10 billion for NIH, ensure dedicated support for
the NIDDK to enable critical COVID-related research, and support
research recovery from the impact of the pandemic.
NIDDK supports and conducts research to combat a portfolio of
diseases that encompass some of the most chronic, common,
consequential, and costly diseases and conditions affecting people in
this country. Many of these diseases and disorders are also associated
with health disparities. These disparities are exacerbated by the
COVID-19 pandemic, with increased rates of infection and poor outcomes
from COVID-19 seen in people with these same conditions.
We want to share just a few NIDDK-supported research highlights to
demonstrate the great impact and promise of NIDDK research to improve
people's health and quality of life (more thorough descriptions are in
NIDDK's Recent Advances & Emerging Opportunities):
--Research on an immune-targeting drug has delayed type 1 diabetes
progression in high-risk individuals for at least 3 years. This
is the first time ever that early preventive therapy was found
to delay onset of clinical type 1 diabetes.
--Research defining subgroups of people with chronic kidney disease
is paving the way for kidney precision medicine.
--Adult and pediatric studies are testing potential therapies and
uncovering genetic and racial/ethnic risk factors for
nonalcoholic fatty liver disease and nonalcoholic
steatohepatitis.
--The Intestinal Stem Cell Consortium is studying intestinal stem
cells' roles in intestinal health and disease, aiming to
identify and develop novel therapies to regenerate the human
intestine.
--The NIDDK sponsored Symptoms of Lower Urinary Tract Dysfunction
Research Network (LURN) is working to improve the lives of
patients affected by lower urinary tract dysfunction (LUTD)
through overcoming barriers to diagnosis and treatment.
--Innovative research by NIDDK scientists showed the potential
importance of speech-generated droplets in SARS-CoV-2
transmission.
--NIDDK research has led to better treatments such as new drugs that
can dramatically reduce disease burden for many with cystic
fibrosis; increased understanding and treatment of inflammatory
bowel diseases such as Crohn's disease and ulcerative colitis;
and to new Type 2 diabetes drugs that provide cardiovascular
health benefits in people with diabetes.
Our organizations are grateful for the funding that you have
provided to the NIH and the NIDDK as part of the appropriations process
and the support Congress has given to the NIH, including several of its
institutes and centers, to respond to the public health emergency.
However, we note that NIDDK's FY 2021 appropriation was proportionally
less than other Institutes and NIDDK and has not received any emergency
funding despite researching diseases that are associated with increased
risk of severe COVID-19 outcomes and are themselves public health
crises.
As health professionals and researchers continue to respond to this
pandemic, our understanding of COVID-19 continues to evolve. What we
originally understood to be an infectious, respiratory virus, we now
know disproportionately impacts individuals with diabetes, obesity,
liver diseases and kidney diseases. COVID-19 infection damages a
variety of organ systems, including the kidneys and it may even
contribute to new onset of kidney failure and diabetes. Patients also
are experiencing hematologic complications, including issues related to
coagulation and blood cell production. Yet, without additional funding,
NIDDK will be forced to continue to divert crucial funds from its
existing priorities to better understand these characteristics of
COVID-19, a loss to the patients who ultimately benefit from research
funded by NIDDK.
With emergency supplemental funding, NIDDK will be able to support
research on SARS-CoV-2/COVID-19 as it intersects with and affects
people with or at risk for diabetes and other metabolic diseases,
obesity, and endocrine, digestive, hepatobiliary, pancreas, kidney,
urological and hematologic diseases. Specific areas of research
include: determining the basis for the link between COVID-19 severity
and diseases in the NIDDK's portfolio; identifying novel pathogenic
pathways and potential translational targets for the treatment or
prevention of kidney, gastrointestinal, and endocrine/metabolic
diseases associated with SARS-CoV-2 infection; and understanding the
roles of health disparities associated with SARS-CoV-2 infection, organ
injury, and adverse disease outcomes.
Further, the occurrence of Post-Acute Sequelae of SARS-CoV-2
infection (PASC), in which individuals experience persistent symptoms
involving multiple body systems after recovering from their initial
illness, shows that while new infections with SARS-CoV-2 have decreased
in the US, our understanding of the long-term consequences of COVID-19
is far from over and creates another important and emerging research
opportunity.
In addition to new areas of research, the pandemic has created
additional barriers and expenses that complicate restarting research.
Supplemental funds are needed to:
--Restart research projects, programs, and clinical trials that were
underway before the onset of the pandemic and were stopped or
delayed for safety reasons, consequently stalling or delaying
new discoveries.
--Support early-stage investigators as they face uncertainties and
challenges in making progress in their careers, especially
women investigators and others who are disproportionately
affected by caregiving roles during the pandemic and members of
groups underrepresented in research.
--Provide financial support so that critical research support staff
can be retained and to accelerate the eventual resumption of
research activities post-pandemic.
--Address increasing research costs. The burden of restarting
clinical trials, animal colonies, and other programs and
resources has made conducting research more challenging and
expensive during the pandemic. Costs for personal protective
equipment (PPE), comprehensive cleaning, and ``time sharing''
in laboratories are a few examples.
All of this leads to a simply put yet challenging goal: While
addressing the immediate challenges of COVID-19, we also need to
continue to combat the diseases within NIDDK's mission, which will
continue to place an enormous personal and financial toll on this
country long after the pandemic is over. Bolstering support for NIDDK
will help ensure that critical research in these areas continues and
will support the institute's commitment to understanding the roles of
social determinants of health and health disparities with the goal of
improving health for all. Our nation's progress against COVID-19--and
every other health threat--is built on the longstanding bipartisan
commitment to medical research. Preserving that investment will be key
to continued advances. We urge you to support the NIH with a $3.1
billion increase for FY 2022 with a proportionate increase of $157
million for NIDDK and provide emergency supplemental funds for NIH,
including dedicated support for the NIDDK, to ensure we lead the world
in providing new and better cures, diagnostics, and treatments while
protecting all patients and the research enterprise.
______
Prepared Statement of the Friends of the National Institute of
Mental Health
Chair Murray, Ranking Member Blunt, and Members of the
Subcommittee:
I write on behalf of the Friends of NIMH, a newly formed coalition
of more than 30 organizations representing scientists, physicians,
health care providers, individuals, families, and communities. The
members of the Friends of NIMH are dedicated to supporting the mission
of the National Institute of Mental Health (NIMH) to transform the
understanding of mental health and the treatment of mental illnesses
through basic biomedical, behavioral, and clinical research, to best
inform prevention, early intervention, recovery, and cures. We write to
encourage you to provide robust funding for NIMH in FY 2022 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 benefit your
constituents. Our member organizations represent communities with
interest across the National Institutes of Health (NIH). Individually
and collectively, our members also belong to the Ad Hoc Group for
Medical Research, a coalition of over 330 patient and voluntary health
groups, medical and scientific societies, academic and research
organizations, and industry that support enhancing the federal
investment in the behavioral and biomedical research conducted and
supported by the NIH. Aligned with the Ad Hoc request, we respectfully
request that the subcommittee provide at least $46.1 billion for the
agency in Fiscal Year (FY) 2022, $3.2 billion above the final FY21
funding level.
Thank you for considering this request.
______
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 $46.1 billion--a $3.3 billion increase--in fiscal year
(FY) 2022 for total spending at NIH for current institutes and
operations, including funds from the 21st Century Cures Act for
targeted initiatives which corresponds with the overall
recommendation of the Ad Hoc Group for Medical Research.
--An increase of least $500 million specifically dedicated to support
cross-Institute aging research at the NIH, including but not
limited to biomedical, behavioral and social sciences aging
research. This increase must be separate from whatever funds
are allocated to the Advanced Research Projects Agency for
Health (ARPA-H) at NIH. Investment in ARPA-H should not come at
the cost of the existing NIH institutes and centers conducting
and supporting research on aging.
--A minimum increase of $289 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.
FoNIA understands that during this time, Congress is working hard
to stem fallout of both the human and fiscal toll of COVID. In this
rapidly evolving crisis, NIH/NIA has played an extremely vital role in
examining how COVID impacts older adults, why they may be more
susceptible to the virus, how they can be protected, and the social and
economic effects of the pandemic on older adults.
NIA sponsors and conducts the lion's share of federal aging-related
research, and this pioneering science contributes significantly to the
improved care and quality of life of older adults. 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.
NIA's COVID response has been wide and varied. NIA has been heavily
involved in the work of the Rapid Acceleration of Diagnosis (RADx)
program designed to speed innovation in the development,
commercialization, and implementation of technologies for COVID
testing. NIA is especially active in the RADx Underserved Populations
(RADx-UP) program, which strives to understand the factors associated
with disparities in COVID morbidity and mortality.
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).
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 US, and acts as
an economic engine and multiplier in local and regional communities.
According to United for Medical Research, total FY 2020 NIH research
spending of $34.65 billion supported more than 536,338 American jobs
and generated nearly $91.35 billion in economic activity across the
country.
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 Eric W. Sokol, 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 2022 Labor, Health and Human Services
Appropriations bill we request that the subcommittee include the
President's requested level of $51 billion for the National Institutes
of Health (NIH), including no less than $46.1 billion for NIH's base
program level budget. In addition, we greatly appreciate the President
Budget's recognition of the need to significantly increase our nation's
investment in the National Institute on Drug Abuse (NIDA) and its
response to the opioid epidemic. The President's Fiscal 2022 Budget
recommends a $372.2 million increase in NIDA's budget, a 25 percent
increase. We strongly encourage the Subcommittee to include the
President's recommended funding level of $1.852 billion for NIDA in the
Senate version of the Fiscal Year 2022 Labor, Health and Human Services
Appropriations bill.
We also respectfully request the inclusion of the following NIDA
specific report language.
Opioid Initiative. The Committee continues to be concerned about
the opioid overdose 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 data from the Centers
for Disease Control and Prevention that shows opioid overdose
fatalities increasing from 2018 to 2019, with the primary driver being
the increased overdose deaths involving synthetic opioids, primarily
illicitly manufactured fentanyls. To combat this crisis the Committee
has provided within NIDA's budget no less than $270,295,000 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 data released by the Centers for Disease Control and
Prevention, 32,000 overdose deaths involved drugs in the drug
categories that include methamphetamine and cocaine in 2019, an
increase of over 700%. 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. Methamphetamine is highly addictive and there are no FDA-
approved treatments for 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 which
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 which saw over 81,000 drug overdose deaths in the
United States in the 12 months ending in May 2020, 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 expand its 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 as the Institute
has done for the COVID-19 pandemic.
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. NIDA is encouraged
to continue supporting a full range of research on the health effects
of marijuana and its components, including research to understand how
marijuana policies affect public health.
Electronic Cigarettes. The Committee understands that electronic
cigarettes (e-cigarettes) and other vaporizing equipment are
increasingly popular among adolescents, and requests that NIDA 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 from regions of the country significantly
affected by the opioid crisis and follow them and their
children for at least 10 years. This knowledge will be critical
to help predict and prevent some of the impacts of pre- and
postnatal exposure to drugs or adverse environments, including
risk for future substance abuse, 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 other NIH ICOs to
support this important study.
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 brain disease -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 heroin and 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 eliminated from society.
We understand that the FY2022 budget cycle will involve setting
priorities and accepting compromise, however, in the current climate we
believe a focus on substance use disorders deserves to be prioritized
accordingly. Thank you for your support for the National Institute on
Drug Abuse.
______
Prepared Statement of FSHD Society
Honorable Chairwoman Murray, Ranking Member Blunt, and
distinguished members of the Subcommittee, thank you for the
opportunity to testify. We are requesting the FY2022 appropriation of
an amount of $33 million for the agency U.S. DHHS National Institutes
of Health (NIH) program on research specifically directed at
facioscapulohumeral disease and facioscapulohumeral muscular dystrophy
(hereafter called FSHD).
FSHD is a heritable disease and one of the most common
neuromuscular disorders with a prevalence of 1:8,000.\1\ It affects
934,000 children and adults of both sexes worldwide. FSHD is
characterized by progressive loss of 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 muscle
it can bring with it respiratory failure and breathing issues,\62\
mild-profound hearing loss, eye problems and cardiac bundle blockage
and arrhythmias.\79\ 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.\80,81\
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.\2\ DUX4 is a transcription
factor that kick starts the embryonic genome during the 2- to 8-cell
stage of development.\3-5\ 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,\6-10\ and currently there is
no cure or therapeutic option available to patients. DUX4 requires and
needs to activate its direct transcriptional targets for DUX4-induced
gene aberration and muscle toxicity.\11-24\ 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.'' \78\
Blocking DUX4's DNA, DUX4's RNA or DUX4's protein ability to
activate its targets has profound therapeutic relevance.\25\ 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. Table 1 lists a
dozen approaches detailed in thirty-eight proof-of-concept publications
that molecular and genetic treatment approaches work in cellular and
animal models for FSHD. 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. Simply unfathomable as to why NIH funding
is this area is not increasing with the pace of discovery.
TABLE 1: Genetic Approaches with Potential to Treat FSHD
--Targeting the DUX4 gene itself by repression using CRISPR/dSaCas9
or CRISPR/dCas9-KRAB;
--Targeting and correcting the FSHD2 SMCHD1 gene mutation with
CRISPR/Cas9;
--Knockdown and silencing of the DUX4 gene by going after DUX4 mRNA
with antisense oligonucleotides and with RNA interference; U7-
asDUX4 snRNAs;
--Targeting DUX4 protein expression using through DNA aptamers;
proteins homologous to DUX4; and DNA decoys;
--Going after and controlling expression target downstream [post-
expression] of DUX4;
--Going after genetic modifiers of DUX4 expression and DUX4-mediated
toxicity between the DUX4 gene and DUX4 mRNA; G-quadruplexes
(GQs); and
--Targeting proteins that perturb DUX4-mediated toxicity or secondary
features of FSHD pathology.\26-63\
The clinical trials readiness priorities remain similar to last
year's testimony. The FSHD scientific community has listed emphasis
areas as: 1.) clinical trials readiness infrastructure and
therapeutics; 2.) direct and surrogate biomarkers; 3.) genetic testing,
genetics and epigenetics; 4.) imaging and outcome measures; and, 5.)
registries and patient focused and reported outcomes.\73\ The way to
measuring disease progression and the effectiveness and safety of drugs
remains deep and hard-going for industry, clinical partners and
patients.
Serendipitously, new NextGen genomic sequencing and diagnostic
technologies, as well as gene-targeted therapeutic approaches have
emerged that will be game changing for FSHD patients and families.
Understanding one's disease or condition is key for both mental and
physical health. This can also aid with family and life planning
decisions. With certainty many barriers to matching FSHD disease
severity to outcome measures would rapidly fall. We could better align
drug and therapeutic modalities with proper phenotypic/genotypic silos
of FSHD based on repeat unit, methylation ranges and other requisites
for FSHD. The current testing approach in the US, albeit excellent, has
created a drag on the momentum towards clinical trials. With therapies
on the way, identifying asymptomatic carriers and those that will
decades later have later onset or mild symptoms, will allow us to then
halt the disease in its early formative stages.\64,66-69,72\
Recently in 2021, two excellent papers were published on FSHD and
DUX4. Both were outstanding--one was using Oxford Nanopore long read
sequencing of direct-RNA to locate DUX4 gene targets and the other was
a careful study of DUX4 expression in its endogenous [native] form
versus the more common recombinant [created] form used in the
laboratory.\70,71\ As I read, I asked myself of each: ``does this tell
us anything more about what DUX4's function is? No. How DUX4 works?
Nada. Or how DUX4 causes FSHD pathophysiology? Nothing at all. How and
if DUX4 itself is toxic to skeletal muscle? Zilch. If all research
using FSHD transgenic cells an animals is simply result of an artifact?
Not sure now.'' Both papers yield the same thought: though DUX4 is the
prime therapeutic target--we know next to nothing about it. It is still
a complete black box; yet the central focus for FSHD therapy. Questions
and areas of research interest emerge from these publications and
allied considerations; flowing fast--each one hypothesis worthy of
several NIH grants. ``Is DUX4 cytotoxicity pathogenic in vivo? How does
expression of DUX4 lead to muscle loss? What is the role of non-muscle
cells in FSHD pathology? Can muscle pathology be stopped once it has
started (as visualized via MRI images) or is it too late? How is DUX4
bursting regulated in vivo? What other cell types express DUX4 in FSHD
and/or healthy individuals? Does the DUX4 mRNA play a nuclear role in
FSHD? Are there noncoding RNA roles for DUX4? Are DUX4 induced protein
aggregates cause or consequence for FSHD? Does autoimmunity play a role
in FSHD? Are there other DUX4-dependent therapeutic targets?'' NIH
should certainly encourage proposals here. 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.
Your Subcommittee and Congress in partnership with NIH, patients
and scientists have made truly outstanding progress in understanding
and treating the nine major types of muscular dystrophy through the
Muscular Dystrophy Community Assistance, Research and Education
Amendments of 2001 (MD-CARE Act, Public Law 107-84). Since passing the
MD CARE Act in 2001, NIH funding for FSHD has not kept up pace with
scientific opportunities listed herein. The NIH is the principal
worldwide source of funding of research on FSHD. Currently active
projects are $16.554 million FY2022 (current actual 23June2021), a 21%
portion of the estimated $80 million spent on all muscular dystrophies.
(source: NIH Research Portfolio Online Reporting Tools (RePORT) keyword
'FSHD or facioscapulohumeral or landouzy-dejerine').
FSHD RESEARCH DOLLARS & FSHD AS A PERCENTAGE OF TOTAL NIH PMUSCULAR DYSTROPHY FUNDING
[Dollars in millions]
--------------------------------------------------------------------------------------------------------------------------------------------------------
Fiscal Year 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 2020 2021
--------------------------------------------------------------------------------------------------------------------------------------------------------
All MD ($ millions).......................... $83 $86 $75 $75 $76 $78 $77 $79 $81 $81 $83 $88e $80e
FSHD ($ millions)............................ $5 $6 $6 $5 $5 $7 $8 $9 $11 $11 $10 $11e $10e
FSHD (% total MD)............................ 6% 7% 8% 7% 7% 9% 10% 11% 14% 14% 12% 13% 13%
--------------------------------------------------------------------------------------------------------------------------------------------------------
Sources: NIH/OD Budget Office & NIH OCPL & NIH RePORT RCDC (e=estimate, a=actual)
We request for FY2022, a doubling of the NIH FSHD research
portfolio to $33 million. At this moment in time, FSHD needs an
infusion of 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) in areas outlined by
experts both in this testimony and in the 2015 DHHS NIH MD Plan.\77\
NIH can issue targeted funding announcements covering FSHD. These
efforts will help NIH receive more grant applications. This is NIH's
wheelhouse and forte without a doubt.
Madam Chairman, this is my sixty-second testimony before the U.S.
Congress' Appropriations Subcommittee on this matter. My FSHD is a
strong fort; it has lasted my lifetime of fifty-nine years. That is a
long time to live with a disease of this burden.\80\ I hope with your
help and action to be able to outlive my disease. I need your help, my
friends and fellow FSHD patients and families need your help. Please
implore NIH to double funding on FSHD and kindly remember that our
lives matter. Madam Chairman, thank you again for your help and
efforts.
References
---------------------------------------------------------------------------
\1\ Deenen, J. C. W. et al. Population-based incidence and
prevalence of facioscapulohumeral dystrophy. Neurology 83, 1056-9
(2014).
\2\ Wang, L. H. & Tawil, R. Facioscapulohumeral Dystrophy. Curr.
Neurol. Neurosci. Rep. 16, 66 (2016).
\3\ Hendrickson, P. G. et al. Conserved roles of mouse DUX and
human DUX4 in activating cleavage-stage genes and MERVL/HERVL
retrotransposons. Nat. Genet. 49, 925-934 (2017).
\4\ Whiddon, J. L., Langford, A. T., Wong, C.-J., Zhong, J. W. &
Tapscott, S. J. Conservation and innovation in the DUX4-family gene
network. Nat. Genet. 49, 935-940 (2017).
\5\ De Iaco, A. et al. DUX-family transcription factors regulate
zygotic genome activation in placental mammals. Nat. Genet. 49, 941-945
(2017).
\6\ Tawil, R. et al. A pilot trial of prednisone in
facioscapulohumeral muscular dystrophy. FSHDY Group. Neurology 48, 46-9
(1997).
\7\ Passerieux, E. et al. Effects of vitamin C, vitamin E, zinc
gluconate, and selenomethionine supplementation on muscle function and
oxidative stress biomarkers in patients with facioscapulohumeral
dystrophy: a double-blind randomized controlled clinical trial. Free
Radic. Biol. Med. 81, 158-69 (2015).
\8\ Kissel, J. T. et al. Randomized, double-blind, placebo-
controlled trial of albuterol in facioscapulohumeral dystrophy.
Neurology 57, 1434-40 (2001).
\9\ Elsheikh, B. H. et al. Pilot trial of diltiazem in
facioscapulohumeral muscular dystrophy. Neurology 68, 1428-9 (2007).
\10\ Wagner, K. R. et al. A phase I/II trial of MYO-029 in adult
subjects with muscular dystrophy. Ann. Neurol. 63, 561-71 (2008).
\11\ Rickard, A. M., Petek, L. M. & Miller, D. G. Endogenous DUX4
expression in FSHD myotubes is sufficient to cause cell death and
disrupts RNA splicing and cell migration pathways. Hum. Mol. Genet. 24,
5901-14 (2015).
\12\ Sandri, M. et al. Caspase 3 expression correlates with
skeletal muscle apoptosis in Duchenne and facioscapulo human muscular
dystrophy. A potential target for pharmacological treatment? J.
Neuropathol. Exp. Neurol. 60, 302-12 (2001).
\13\ Block, G. J. et al. Wnt/b-catenin signaling suppresses DUX4
expression and prevents apoptosis of FSHD muscle cells. Hum. Mol.
Genet. 22, 4661-72 (2013).
\14\ Statland, J. M. et al. Immunohistochemical Characterization of
Facioscapulohumeral Muscular Dystrophy Muscle Biopsies. J. Neuromuscul.
Dis. 2, 291-299 (2015).
\15\ Rickard, A. M., Petek, L. M. & Miller, D. G. Endogenous DUX4
expression in FSHD myotubes is sufficient to cause cell death and
disrupts RNA splicing and cell migration pathways. Hum. Mol. Genet. 24,
5901-14 (2015).
\16\ Kowaljow, V. et al. The DUX4 gene at the FSHD1A locus encodes
a pro-apoptotic protein. Neuromuscul. Disord. 17, 611-23 (2007).
\17\ Bosnakovski, D. et al. An isogenetic myoblast expression
screen identifies DUX4-mediated FSHD-associated molecular pathologies.
EMBO J. 27, 2766-79 (2008).
\18\ Wallace, L. M. et al. DUX4, a candidate gene for
facioscapulohumeral muscular dystrophy, causes p53-dependent myopathy
in vivo. Ann. Neurol. 69, 540-52 (2011).
\19\ Geng, L. N. et al. DUX4 activates germline genes,
retroelements, and immune mediators: implications for
facioscapulohumeral dystrophy. Dev. Cell 22, 38-51 (2012).
\20\ Yao, Z. et al. DUX4-induced gene expression is the major
molecular signature in FSHD skeletal muscle. Hum. Mol. Genet. 23, 5342-
52 (2014).
\21\ Homma, S., Beermann, M. Lou, Boyce, F. M. & Miller, J. B.
Expression of FSHD-related DUX4-FL alters proteostasis and induces TDP-
43 aggregation. Ann. Clin. Transl. Neurol. 2, 151-66 (2015).
\22\ Jagannathan, S. et al. Model systems of DUX4 expression
recapitulate the transcriptional profile of FSHD cells. Hum. Mol.
Genet. 25, 4419-4431 (2016).
\23\ Jones, T. I. et al. Facioscapulohumeral muscular dystrophy
family studies of DUX4 expression: evidence for disease modifiers and a
quantitative model of pathogenesis. Hum. Mol. Genet. 21, 4419-30
(2012).
\24\ Campbell AE, Shadle SC, Jagannathan S, Lim JW, Resnick R,
Tawil R, van der Maarel SM, Tapscott SJ. NuRD and CAF-1-mediated
silencing of the D4Z4 array is modulated by DUX4-induced MBD3L
proteins. Elife. 2018 Mar 13;7. pii: e31023. doi: 10.7554/eLife.31023
(2018).
\25\ Jagannathan S1,2,3, Ogata Y4, Gafken PR4, Tapscott SJ3,
Bradley RK1. Quantitative proteomics reveals key roles for post-
transcriptional gene regulation in the molecular pathology of
facioscapulohumeral muscular dystrophy. Elife. 2019 Jan 15;8. pii:
e41740. doi: 10.7554/eLife.41740 (2019).
\26\ Vanderplanck, C., Ansseau, E., Charron, S., Stricwant, N.,
Tassin, A., Laoudj-Chenivesse, D., et al. The FSHD atrophic myotube
phenotype is caused by DUX4 expression. PLoS One6, e26820. doi:10.1371/
journal.pone.0026820 (2011).
\27\ Wallace, L. M., Liu, J., Domire, J. S., Garwick-Coppens, S.
E., Guckes, S. M.,Mendell, J. R., et al. RNA interference inhibits
DUX4-induced muscletoxicity in vivo: implications for a targeted FSHD
therapy. Mol. Ther.20,1417-1423. doi:10.1038/mt.2012.68 (2012)
\28\ Pandey, S. N., Lee, Y. C., Yokota, T., and Chen, Y. W.
Morpholino treatment improves muscle function and pathology of Pitx1
transgenic mice. Mol. Ther.22, 390-396. doi:10.1038/mt.2013.263 (2014).
\29\ Lim, J. W., Snider, L., Yao, Z., Tawil, R., Van Der Maarel, S.
M., Rigo, F., et al. DICER/AGO-dependent epigenetic silencing of D4Z4
repeats enhanced by exogenous siRNA suggests mechanisms and therapies
for FSHD. Hum. Mol.Genet. 24, 4817-4828. doi:10.1093/hmg/ddv206 (2015).
\30\ Marsollier, A.C., Ciszewski, L., Mariot, V., Popplewell, L.,
Voit, T., Dickson, G., et al. Antisense targeting of 3'end elements
involved in DUX4 mRNA processing is an efficient therapeutic strategy
for facioscapulohumeral dystrophy: a new gene-silencing approach. Hum.
Mol. Genet.25, 1468-1478. doi:10.1093/hmg/ddw015 (2016).
\31\ Himeda CL, Jones, et al. CRISPR/dCas9-mediated Transcriptional
Inhibition Ameliorates the Epigenetic Dysregulation at D4Z4 and
Represses DUX4-fl in FSH Muscular Dystrophy. Mol Ther. Mar;24(3):527-
35. epub 2015 Nov 3. (2016).
\32\ Chen JC, King OD, Zhang Y, et al. Morpholino-mediated
Knockdown of DUX4 Toward Facioscapulohumeral Muscular Dystrophy
Therapeutics. Molecular Therapy. 24 (8):1405-1411. doi:10.1038/
mt.2016.1118. (2016).
\33\ Ansseau, E., Vanderplanck, C., Wauters, A., Harper, S. Q.,
Coppee, F., and Belayew, A. Antisense oligonucleotides used to target
the DUX4 mRNA as therapeutic approaches in FaciosScapuloHumeral
muscular dystrophy (FSHD). Genes 8, 93. doi:10.3390/genes8030093
(2017).
\34\ Bosnakovski, D., Toso, E. A., Hartweck, L. M., Magli, A., Lee,
H. A., Thompson, E.R., et al. The DUX4 homeodomains mediate inhibition
of myogenesis and are functionally exchangeable with the Pax7
homeodomain. J. Cel Sci.130,3685-3697. doi:10.1242/jcs.205427 (2017).
\35\ Marsollier AC, Joubert R, Mariot V, Dumonceaux J. Targeting
the Polyadenylation Signal of Pre-mRNA: A New Gene Silencing Approach
for Facioscapulohumeral Dystrophy. Int J Mol Sci. May 3;19(5). pii:
E1347. doi: 10.3390/ijms19051347. Review. (2018).
\36\ Lee JK, Bosnakovski D, Toso EA, Dinh T, Banerjee S, Bohl TE,
Shi K, Orellana K, Kyba M, Aihara H. Crystal Structure of the Double
Homeodomain of DUX4 in Complex with DNA. Cell Rep. Dec 11;25(11):2955-
2962.e3. doi: 10.1016/j.celrep.2018.11.060. (2018).
\37\ Lim, K. R. Q., and Yokota, T. Invention and early history of
exon skipping and splice modulation, in Exon skipping and inclusion
therapies: methods and protocols. Editors T. Yokota and R. Maruyama
(New York, NY: Springer), 3-30. (2018).
\38\ Himeda CL, Jones TI, Virbasius CM, Zhu LJ, Green MR, Jones PL.
Identification of Epigenetic Regulators of DUX4-fl for Targeted Therapy
of Facioscapulohumeral Muscular Dystrophy. Mol Ther. Jul 5;26(7):1797-
1807. doi: 10.1016/j.ymthe.2018.04.019. Epub 2018 Apr 26. (2018).
\39\ Wallace, L. M., Saad, N. Y., Pyne, N. K., Fowler, A. M.,
Eidahl, J. O., Domire, J. S., et al. Pre-clinical safety and off-target
studies to support translation of AAV-mediated RNAi therapy for FSHD.
Mol. Ther. Methods Clin. Dev.8,121-130. doi:10.1016/j.omtm.2017.12.005
(2018).
\40\ Giesige CR, Wallace LM, Heller KN, Eidahl JO, Saad NY, Fowler
AM, Pyne NK, Al-Kharsan M, Rashnonejad A, Chermahini GA, Domire JS,
Mukweyi D, Garwick-Coppens SE, Guckes SM, McLaughlin KJ, Meyer K,
Rodino-Klapac LR, Harper SQ. AAV-mediated follistatin gene therapy
improves functional outcomes in the TIC-DUX4 mouse model of FSHD. JCI
Insight. 2018 Nov 15;3(22). pii: 123538. doi: 10.1172/
jci.insight.123538. (2018).
\41\ Jones, T., and Jones, P. L. (2018). A cre-inducible DUX4
transgenic mouse model for investigating facioscapulohumeral muscular
dystrophy. PLoS One 13,e0192657. doi:10.1371/journal.pone.0192657
(2018).
\42\ Mitsuhashi, H., Ishimaru, S., Homma, S., Yu, B., Honma, Y.,
Beermann, M. L., et al. Functional domains of the FSHD-associated DUX4
protein. Biol. Open7, bio033977. doi:10.1242/bio.033977 (2018).
\43\ Goossens, R., van den Boogaard, M. L., Lemmers, R. J. L. F.,
Balog, J., van der Vliet, P. J., Willemsen, I. M., et al. Intronic
SMCHD1 variants in FSHD: testing the potential for CRISPR-Cas9 genome
editing. J. Med. Genet. 56, 828-837. doi:10.1136/jmedgenet-2019-106402
(2019).
\44\ Dion C, Roche S, Laberthonniere C, Broucqsault N, Mariot V,
Xue S, Gurzau AD, Nowak A, Gordon CT, Gaillard MC, El-Yazidi C, Thomas
M, Schlupp-Robaglia A, Missirian C, Malan V, Ratbi L, Sefiani A,
Wollnik B, Binetruy B, Salort Campana E, Attarian S, Bernard R, Nguyen
K, Amiel J, Dumonceaux J, Murphy JM, Dejardin J, Blewitt ME, Reversade
B, Robin JD, Magdinier F. SMCHD1 is involved in de novo methylation of
the DUX4-encoding D4Z4 macrosatellite. Nucleic Acids Res. 2019 Jan 30.
doi: 10.1093/nar/gkz005. [Epub ahead of print] (2019).
\45\ Jagannathan S, Ogata Y, Gafken PR, Tapscott SJ, Bradley RK.
Quantitative proteomics reveals key roles for post-transcriptional gene
regulation in the molecular pathology of facioscapulohumeral muscular
dystrophy. Elife. 2019 Jan 15;8:e41740. doi: 10.7554/eLife.41740. PMID:
30644821 (2019).
\46\ Lim, K. R. Q., and Yokota, T. (2020). Invention and early
history of gapmers. Methods Mol. Biol. 2176, 3-19. doi:10.1007/978-1-
0716-0771-8_1 (2020).
\47\ Ciszewski L, Lu-Nguyen N, Slater A, Brennan A, Williams HEL,
Dickson G, Searle MS, Popplewell L. G-quadruplex ligands mediate
downregulation of DUX4 expression. Nucleic Acids Res. 2020 May
7;48(8):4179-4194. doi: 10.1093/nar/gkaa146. (2020).
\48\ Lim KRQ, Maruyama R, Echigoya Y, Nguyen Q, Zhang A, Khawaja H,
Sen Chandra S, Jones T, Jones P, Chen YW, Yokota T. Inhibition of DUX4
expression with antisense LNA gapmers as a therapy for
facioscapulohumeral muscular dystrophy. Proc Natl Acad Sci U S A. 2020
Jul 14;117(28):16509-16515. doi: 10.1073/pnas.1909649117. (2020).
\49\ Lim, K. R. Q., Nguyen, Q., and Yokota, T. DUX4 signaling in
the pathogenesis of facioscapulohumeral muscular dystrophy. Int. J.
Mol. Sci.21,729. doi:10.3390/ijms21030729.
\50\ Derenne, A., Tassin, A., Nguyen, T. H., De Roeck, E., Jenart,
V., Ansseau, E., et al. (2020). Induction of a local muscular dystrophy
using electroporation in vivo: an easy tool for screening therapeutics.
Sci. Rep.10, 11301. doi:10.1038/s41598-020-68135-7 (2020).
\51\ Bittel, A. J., Sreetama, S. C., Bittel, D. C., Horn, A.,
Novak, J. S., Yokota, T., et al. Membrane repair deficit in
facioscapulohumeral muscular dystrophy. Int. J. Mol. Sci.21, 5575.
doi:10.3390/ijms21155575 (2020).
\52\ Jones TI, Chew GL, Barraza-Flores P, Schreier S, Ramirez M,
Wuebbles RD, Burkin DJ, Bradley RK, Jones PL. Transgenic mice
expressing tunable levels of DUX4 develop characteristic
facioscapulohumeral muscular dystrophy-like pathophysiology ranging in
severity. Skelet Muscle. Apr 11;10(1):8. doi: 10.1186/s13395-020-00227-
4 (2020).
\53\ Mariot, V., Joubert, R., Marsollier, A.-C., Hourde, C., Voit,
T., and Dumonceaux, J. A deoxyribonucleic acid decoy trapping DUX4 for
the treatment of facioscapulohumeral muscular dystrophy. Mol. Ther.
Nucleic Acids. doi:10.1016/j.omtn.2020.10.028 (2020).
\54\ Cohen, J., DeSimone, A., Lek, M., and Lek, A. Therapeutic
approaches in facioscapulohumeral muscular dystrophy. Trends Mol.
Med.27, 123-37.doi:10.1016/j.molmed.2020.09.008 (2020).
\55\ Lek, A., Zhang, Y., Woodman, K. G., Huang, S., DeSimone, A.
M., Cohen, J., et al. Applying genome-wide CRISPR-Cas9 screens for
therapeutic discovery in facioscapulohumeral muscular dystrophy. Sci.
Transl. Med.12, eaay0271.doi:10.1126/scitranslmed.aay0271 (2020).
\56\ Lemmers RJLF, van der Vliet PJ, Blatnik A, Balog J, Zidar J,
Henderson D, Goselink R, Tapscott SJ, Voermans NC, Tawil R, Padberg
GWAM, van Engelen BG, van der Maarel SM. Chromosome 10q-linked FSHD
identifies DUX4 as principal disease gene. J Med Genet. 2021 Jan
12:jmedgenet-2020-107041. doi: 10.1136/jmedgenet-2020-107041 (2021).
\57\ Rashnonejad A, Amini-Chermahini G, Taylor NK, Wein N, Harper
SQ. Designed U7 snRNAs inhibit DUX4 expression and improve FSHD-
associated outcomes in DUX4 overexpressing cells and FSHD patient
myotubes. Mol Ther Nucleic Acids. 2020 Dec 10;23:476-486. doi: 10.1016/
j.omtn.2020.12.004. eCollection 2021 Mar 5 (2021).
\58\ Himeda CL, Jones TI, Jones PL. Targeted epigenetic repression
by CRISPR/dSaCas9 suppresses pathogenic DUX4-fl expression in FSHD. Mol
Ther Methods Clin Dev. 2020 Dec 10;20:298-311. doi: 10.1016/
j.omtm.2020.12.001. eCollection 2021 Mar 12 (2021).
\59\ Schatzl T, Kaiser L, Deigner HP. Facioscapulohumeral muscular
dystrophy: genetics, gene activation and downstream signaling with
regard to recent therapeutic approaches: an update. Orphanet J Rare
Dis. 2021 Mar 12;16(1):129. doi: 10.1186/s13023-021-01760-1. Review
(2021).
\60\ Lim KRQ, Yokota T. Genetic Approaches for the Treatment of
Facioscapulohumeral Muscular Dystrophy. Front Pharmacol. 2021 Mar
12;12:642858. doi: 10.3389/fphar.2021.642858. eCollection 2021. Review
(2021).
\61\ Mellion ML, Ronco L, Berends CL, Pagan L, Brooks S, van Esdonk
MJ, van Brummelen EMJ, Odueyungbo A, Thompson LA, Hage M, Badrising UA,
Raines S, Tracewell WG, van Engelen B, Cadavid D, Groeneveld GJ. Phase
1 clinical trial of losmapimod in facioscapulohumeral dystrophy:
Safety, tolerability, pharmacokinetics, and target engagement. Br J
Clin Pharmacol. 2021 Apr 30. doi: 10.1111/bcp.14884. (2021).
\62\ Lu-Nguyen N, Malerba A, Herath S, Dickson G, Popplewell L.
Systemic antisense therapeutics inhibiting DUX4 expression ameliorates
FSHD-like pathology in an FSHD mouse model. Hum Mol Genet. 2021 May
13:ddab136. doi: 10.1093/hmg/ddab136. (2021).
\63\ Das S, Chadwick BP. CRISPR mediated targeting of DUX4 distal
regulatory element represses DUX4 target genes dysregulated in
Facioscapulohumeral muscular dystrophy. Sci Rep. 2021 Jun
15;11(1):12598. doi: 10.1038/s41598-021-92096-0. (2021).
\64\ Goselink RJM, Mul K, van Kernebeek CR, Lemmers RJLF, van der
Maarel SM, Schreuder THA, Erasmus CE, Padberg GW, Statland JM, Voermans
NC, van Engelen BGM. Early onset as a marker for disease severity in
facioscapulohumeral muscular dystrophy. Neurology. 2019 Jan
22;92(4):e378-e385. doi: 10.1212/WNL.0000000000006819. Epub 2018 Dec 19
(2019).
\65\ Henke C, Spiesshoefer J, Kabitz HJ, Herkenrath S, Randerath W,
Brix T, Gorlich D, Young P, Boentert M. Respiratory muscle weakness in
facioscapulohumeral muscular dystrophy. Muscle Nerve. 2019
Dec;60(6):679-686. doi: 10.1002/mus.26717. Epub 2019 Oct 23 (2019).
\66\ Sacconi S, Briand-Suleau A, Gros M, Baudoin C, Lemmers RJLF,
Rondeau S, Lagha N, Nigumann P, Cambieri C, Puma A, Chapon F, Stojkovic
T, Vial C, Bouhour F, Cao M, Pegoraro E, Petiot P, Behin A, Marc B,
Eymard B, Echaniz-Laguna A, Laforet P, Salviati L, Jeanpierre M,
Cristofari G, van der Maarel SM. FSHD1 and FSHD2 form a disease
continuum. Neurology. 2019 May 7;92(19):e2273-e2285. doi: 10.1212/
WNL.0000000000007456. Epub 2019 Apr 12 (2019).
\67\ Salort-Campana E, Fatehi F, Beloribi-Djefaflia S, Roche S,
Nguyen K, Bernard R, Cintas P, Sole G, Bouhour F, Ollagnon E, Sacconi
S, Echaniz-Laguna A, Kuntzer T, Levy N, Magdinier F, Attarian S. Type 1
FSHD with 6-10 Repeated Units: Factors Underlying Severity in Index
Cases and Disease Penetrance in Their Relatives Attention. Int J Mol
Sci. 2020 Mar 23;21(6):2221. doi: 10.3390/ijms21062221 (2020).
\68\ Wong CJ, Wang LH, Friedman SD, Shaw D, Campbell AE, Budech CB,
Lewis LM, Lemmers RJFL, Statland JM, van der Maarel SM, Tawil RN,
Tapscott SJ. Longitudinal measures of RNA expression and disease
activity in FSHD muscle biopsies. Hum Mol Genet. 2020 Apr
15;29(6):1030-1043. doi: 10.1093/hmg/ddaa031. PMID: 32083293 (2020).
\69\ Rieken A, Bossler AD, Mathews KD, Moore SA. CLIA Laboratory
Testing for Facioscapulohumeral Dystrophy: A Retrospective Analysis.
Neurology. 2021 Feb 16;96(7):e1054-e1062. doi: 10.1212/
WNL.0000000000011412. Epub 2020 Dec 21 (2021).
\70\ Chau J, Kong X, Viet Nguyen N, Williams K, Ball M, Tawil R,
Kiyono T, Mortazavi A, Yokomori K. Relationship of DUX4 and target gene
expression in FSHD myocytes. Hum Mutat. 2021 Jan 27. doi: 10.1002/
humu.24171 (2021).
\71\ Mitsuhashi S, Nakagawa S, Sasaki-Honda M, Sakurai H, Frith MC,
Mitsuhashi H. Nanopore direct RNA sequencing detects DUX4-activated
repeats and isoforms in human muscle cells. Hum Mol Genet. 2021 Mar
9:ddab063. doi: 10.1093/hmg/ddab063 (2021).
\72\ Goselink RJM, Schreuder THA, Mul K, Voermans NC, Erasmus CE,
van Engelen BGM, van Alfen N. Muscle ultrasound is a responsive
biomarker in facioscapulohumeral dystrophy.Neurology. 2020 Apr
7;94(14):e1488-e1494. doi: 10.1212/WNL.0000000000009211. (2020).
\73\ Wang LH, Shaw DWW, Faino A, Budech CB, Lewis LM, Statland J,
Eichinger K, Tapscott SJ, Tawil RN, Friedman SD. Longitudinal study of
MRI and functional outcome measures in facioscapulohumeral muscular
dystrophy. BMC Musculoskelet Disord. 2021 Mar 10;22(1):262. doi:
10.1186/s12891-021-04134-7 (2021).
\74\ Greco A, Straasheijm KR, Mul K, van den Heuvel A, van der
Maarel SM, Joosten LAB, van Engelen BGM, Pruijn GJM. Profiling Serum
Antibodies Against Muscle Antigens in Facioscapulohumeral Muscular
Dystrophy Finds No Disease-Specific Autoantibodies. J Neuromuscul Dis.
2021 May 15. doi: 10.3233/JND-210653. (2021).
\75\ Karpukhina A, Galkin I, Ma Y, Dib C, Zinovkin R, Pletjushkina
O, Chernyak B, Popova E, Vassetzky Y. Analysis of genes regulated by
DUX4 via oxidative stress reveals potential therapeutic targets for
treatment of facioscapulohumeral dystrophy. Redox Biol. 2021
Jul;43:102008. doi: 10.1016/j.redox.2021.102008. (2021).
\76\ Banerji CRS, Zammit PS. Pathomechanisms and biomarkers in
facioscapulohumeral muscular dystrophy: roles of DUX4 and PAX7. EMBO
Mol Med. 2021 Jun 21:e13695. doi: 10.15252/emmm.202013695. (2021).
\77\ Rieff HI, Katz SI et al. The Muscular Dystrophy Coordinating
Committee Action Plan for the Muscular Dystrophies. Muscle Nerve. 2016
Mar 21. [Epub ahead of print] (2016).
\78\ Kolata, G., Reanimated 'Junk' DNA Is Found to Cause Disease.
New York Times, Science. Published online: August 19, 2010 http://
www.nytimes.com/2010/08/20/science/20gene.html.
\79\ Ducharme-Smith A, Nicolau S, Chahal CAA, Ducharme-Smith K,
Rehman S, Jaliparthy K, Khan N, Scott CG, St Louis EK, Liewluck T,
Somers VK, Lin G, Brady PA, Milone M. Cardiac Involvement in
Facioscapulohumeral Muscular Dystrophy (FSHD). Front Neurol. 2021 May
24;12:668180. doi: 10.3389/fneur.2021.668180. (2021).
\80\ Blokhuis AM, Deenen JCW, Voermans NC, van Engelen BGM, Kievit
W, Groothuis JT. The socioeconomic burden of facioscapulohumeral
muscular dystrophy. J Neurol. 2021 May 27. doi: 10.1007/s00415-021-
10591-w. (2021).
\81\ Wallace B, Smith KT, Thomas S, Conway KM, Westfield C, Andrews
JG, Weinert RO, Do TQN, Street N; Muscular Dystrophy Surveillance,
Tracking, and Research Network (MD STARnet). Characterization of
individuals with selected muscular dystrophies from the expanded pilot
of the Muscular Dystrophy Surveillance, Tracking and Research Network
(MD STARnet) in the United States. Birth Defects Res. 2021 Apr
15;113(7):560-569. doi: 10.1002/bdr2.1764. (2020).
[This statement was submitted by Daniel Paul Perez, Co-Founder &
Director Emeritus and past Chairman, President & Chief Executive
Officer, Chief Scientific Officer, FSHD Society.]
______
Prepared Statement of the GBS|DCIDP Foundation International
summary of recommendations for fiscal year 2022
_______________________________________________________________________
--Provide $46.1 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 $10 billion for the Centers for Disease Control and
Prevention (CDC) and $5 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 FY2022 L-HHS
Appropriations Bill.
about gbs, cidp, variants, and related conditions
Guillain-Barre Syndrome
Guillain-Barre Syndrome (GBS) is an inflammatory disorder of the
peripheral nerves outside the brain and spinal cord. GBS is
characterized by the rapid onset of numbness, weakness, and often
paralysis of the legs, arms, breathing muscles, and face. Paralysis is
ascending, meaning that it travels up the limbs from fingers and toes
towards the torso. Loss of reflexes, such as the knee jerk, are usually
found. Usually, a new case of GBS is admitted to ICU (Intensive Care)
to monitor breathing and other body functions until the disease is
stabilized. Plasma exchange (a blood ``cleansing'' procedure) and high
dose intravenous immune globulins are often helpful to shorten the
course of GBS. The acute phase of GBS typically varies in length from a
few days to months. Patient care involves the coordinated efforts of a
team such as a neurologist, physiatrist (rehabilitation physician),
internist, family physician, physical therapist, occupational
therapist, social worker, nurse, and psychologist or psychiatrist.
Recovery may occur over six months to two 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% of CIDP patients will progress to wheelchair dependence.
Early recognition and treatment can avoid a significant amount of
disability. Post-treatment life depends on whether the disease was
caught early enough to benefit from treatment options. The gradual
onset of CIDP can delay diagnosis by several months or even years,
resulting in significant nerve damage that may take several courses of
treatment before benefits are seen. The chronic nature of CIDP
differentiates long-term care from GBS patients. Adjustments inside the
home may need to be made to facilitate a return to normal life.
about the foundation
The Foundation's vision is that every person afflicted with GBS,
CIDP, or variants has convenient access to early and accurate
diagnosis, appropriate and affordable treatments, and dependable
support services.
The Foundation's mission is to improve the quality of life for
individuals and families across America affected by GBS, CIDP, and
their variants by:
--Providing a network for all patients, their caregivers and families
so that GBS or CIDP patients can depend on the Foundation for
support, and reliable up-to-date information.
--Providing public and professional educational programs worldwide
designed to heighten awareness and improve the understanding
and treatment of GBS, CIDP and variants.
--Expanding the Foundation's role in sponsoring research and engaging
in patient advocacy.
centers for disease control and prevention
CDC and the National Center for Chronic Disease Prevention and
Health Promotion (NCCDPHP) have resources that could be brought to bear
to improve public awareness and recognition of GBS, CIDP and related
conditions. The Foundation supports a meaningful increase to the
Centers for Disease Control and Prevention as well as 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|DCIDP community. Last May 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. 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 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
$46.1 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|DCIDP Foundation International.]
______
Prepared Statement of GEAR UP
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 William
Ruiz, 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
2022 to support an additional 100,000 students across our country so
that they, too, can have the support I received through GEAR UP.
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
prepared 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% higher than the rates for low-income students
nationally.\1\ Considering that GEAR UP achieves this critical goal at
a cost of approximately $694 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). FY 2017 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.
---------------------------------------------------------------------------
Being the son of immigrant parents and growing up in a low-
socioeconomic neighborhood in Los Angeles, California, I never
envisioned myself going to college. My parents worked exceptionally
hard to provide for my siblings and me, but because they had to drop
out of school at a very young age to leave Mexico and move to the
United States, they had very little knowledge of the education system.
While I wasn't introduced to higher education by my family, my parents
did teach me about the value of hard work and made sure that I attained
good grades throughout my time in K-12 education. As I navigated my way
through elementary and middle school, I always looked forward to high
school graduation because I thought that that would be the end of my
educational journey. It was always my plan to graduate high school and
enter the workforce full-time, just like how my older siblings did. It
wasn't until I was introduced to the GEAR UP program in 7th grade that
I was exposed to college. At that time, college was the last thing on
my mind, but the GEAR UP staff continued to remind us that they would
pack up their office and follow us to our local high school.
Fast forwarding to my first day at Benjamin Franklin High School, I
remember the first adult I saw on campus: GEAR UP Counselor Mr. Burton.
I was shocked to see that they were serious when they said they would
follow us. Throughout the rest of my freshman year, we would
participate in various workshops with GEAR UP. I always enjoyed talking
to the GEAR UP team, but I still couldn't see myself pursuing higher
education. At the end of my first year of high school, GEAR UP started
recruiting students for their peer mentor and summer programs.
After signing up for summer school and participating in the peer
mentor camps with GEAR UP, I immersed myself in all things GEAR UP. At
the beginning of my sophomore year, I met an individual who, to this
day, has a special place in my heart. I can never truly thank Mr.
Robert Aguirre for all the help and support he has provided me with
since 2009. While I had the grades to attend college and pursue a
degree, Mr. Aguirre provided me with the structure and gave me all the
resources I needed to pursue higher education. Growing up in a
neighborhood with a lot of gang violence and having friends who dropped
out of school a young age, it was reassuring to have a positive male
role model that I could look up to. I always heard that it only takes
one adult to care for a student to do well in school. I can undoubtedly
say Mr. Aguirre was that person for me. I always knew that if I had any
issues regarding school, I could easily walk to the GEAR UP office to
talk to him.
I wouldn't have gone to a 4-year university if it wasn't for Mr.
Aguirre and GEAR UP. Not only did GEAR UP teach me about admission
requirements and financial aid, but they also exposed me to different
colleges and universities. One of my fondest memories of high school
was traveling up the California coastline on a bus to visit colleges in
Northern California. Because of the field trips and the exposure to
colleges, I began to imagine myself on college campuses. When I started
my senior year of high school, the GEAR UP staff sat me down in the
school's computer lab to apply to college. As someone who had simply
gone through the motions, I really appreciated GEAR UP for giving me
that extra push to take education more seriously.
I will always be grateful for all the love and support that GEAR UP
provided as I navigated high school. Yes, GEAR UP is an acronym and a
federally funded program, but to me, GEAR UP is family.
Because of what GEAR UP gave me, I wanted to give back to GEAR UP.
I currently have the honor and privilege of working with over 800
students in the Compton Unified School District as a GEAR UP Program
Coordinator. I am also a Founding Board Member of the GEAR UP Alumni
Association. The GEAR UP Alumni Association aims to support GEAR UP
Alumni so that GEAR UP students can not only get to college but also
graduate. Our vision is to eventually branch out and support GEAR UP
students across the country.
I am also happy to share with you that beginning in August 2021, I
will be pursuing my Master of Arts in Diverse Community Development
Leadership (DCDL) at California State University, Northridge. As a GEAR
UP alum and current educator, I want to continue my educational journey
so that I can best assist students like me. My initial goal was only to
graduate high school. Now, I am proud of the fact that I am the first
in my family to graduate college and will be the first to receive a
graduate degree.
None of this would have been possible without GEAR UP. I will
always be open and honest about my journey because there are a lot of
students who have similar backgrounds as me. I wake up every day
grateful that I was able to be a GEAR UP student because it changed my
life for the better.
As you take on the work of preparing for the fiscal year 2022
appropriations, I urge you to consider increasing the investment in the
GEAR UP program to $435,000,000 so that 100,000 more students just like
me can benefit from the program. Thank you to the committee for taking
the time to read my testimony.
Prepared Statement of Global Health Council
Global Health Council (GHC) is the leading membership organization
for nonprofits, businesses, universities, and individuals dedicated to
saving lives and improving the health of people worldwide. GHC thanks
the Subcommittee for the opportunity to share this testimony in support
of global health programs under the jurisdiction of the Departments of
Labor and Health and Human Services. For Fiscal Year (FY) 2022, GHC
encourages continued support for global health at a minimum of FY21
levels enacted by Congress. However, in order to achieve U.S. global
health goals and commitments, we ask that you support a greater
investment in global health programs for FY22, which includes at a
minimum: $6,356,000,000 for the National Institute of Allergy and
Infectious Disease (NIAID), $3,845,000,000 for the Office of AIDS
Research, and $91,000,000 for the Fogarty International Center at the
National Institutes of Health (NIH); an investment of $735,000,000 for
the Center for Emerging Zoonotic and Infectious Diseases, $300,000,000
for the Infectious Diseases Rapid Response Fund, and no less than
$898,000,000 for the Center for Global Health at the Centers for
Disease Control and Prevention (CDC).
In light of the COVID-19 pandemic, we must urge Congress to
appropriate funds to sustain America's legacy abroad and to support
existing programs in their ongoing response to the coronavirus. It is
our hope that appropriators will consider the additional needs and
negative effects of the COVID-19 pandemic when making appropriations
for FY22. We have seen significant declines across global health
programs in their capacity to reach the same or more people for
preventative care, ongoing care for diseases ranging from HIV/AIDS,
tuberculosis, non-communicable diseases, malaria, and more.
We know that these programs work and have secured their place as
some of the most critical and successful tools for U.S. global health.
By investing in these programs, the United States is continuing to
build healthier and more self-reliant communities, which ultimately
become economically and politically stable. We have seen the COVID-19
pandemic exacerbate weak points in health systems in rich and poorer
countries alike, ultimately weakening our own health system. It
highlighted inefficiencies and a sheer lack of access to care around
the world. We cannot afford to lose more ground on the progress that
the United States has already made towards building healthier
communities. A failure to backstop these investments would roll back
the progress we have spent decades achieving and ultimately undermine
U.S. foreign policy and global health priorities.
We undeniably live in a global environment. Global health is
important for medical professionals here at home, too. Every year, more
than 500 million people cross borders in planes, and with them the
potential for infectious diseases to enter our country, demanding more
of our health workforce. But U.S.-based providers and other responders
have the opportunity to learn from health programs abroad about how
best to tackle diseases whenever they arrive. We have an opportunity
here, to mobilize everyone involved in health, from scientists,
pharmaceutical companies, frontline workers, advocates, and
policymakers, to create a world where health threats can become a thing
of the past.
We must continue to build upon the hard work and achievements of
previous years in order to prevent the persistent global health
challenges of our time and ensure a healthy future for citizens around
the world. In our current environment, in response to COVID-19, we must
consider increasing investments in global health and development
assistance funding. We have a moral obligation to resolve the
challenges that U.S. global health programs now face in light of the
pandemic. And it is in our national interest to demonstrate that these
are essential commitments.
Thank you for your consideration of this request.
[This statement was submitted by Kiki Kalkstein, Director of
Advocacy &
Engagement, Global Health Council.]
______
Prepared Statement of the Global Health Technologies Coalition
On behalf of the Global Health Technologies Coalition (GHTC), a
group of 37 nonprofit organizations, academic institutions, and aligned
businesses advancing policies to accelerate the creation of new drugs,
vaccines, diagnostics, and other tools that bring healthy lives within
reach for all people, I am providing testimony on fiscal year 2022
(FY22) appropriations for the National Institutes of Health (NIH), the
Centers for Disease Control and Prevention (CDC), and the Biological
Advanced Research and Development Authority (BARDA). These
recommendations reflect the needs expressed by our members working
across the globe to develop new and improved technologies for the
world's most pressing health issues. We appreciate the Committee's
support for global health, particularly for continued research and
development (R&D) to advance new drugs, vaccines, diagnostics, and
other tools for long-standing and emerging health challenges, including
COVID-19. To accelerate progress toward lifesaving tools for a range of
health threats, we respectfully request increased funding for NIH,
including an additional $10 million for the Fogarty International
Center (FIC); funding to match CDC's increased responsibilities in
global health and global health security-in line with the overall
increase for CDC proposed in the President's Discretionary Budget
Request, which should be reflected in increases for the Center for
Global Health (CGH) and National Center for Emerging Zoonotic and
Infectious Diseases (NCEZID)--and the creation of a new, dedicated
funding line to support BARDA's critical work in emerging infectious
diseases (EIDs), which accelerated to unprecedented levels over the
past year and should be sustainably funded beyond the COVID-19
pandemic.
GHTC members strongly believe that sustainable investment in R&D
for a broad range of neglected diseases and health conditions is
critical to tackling both long-standing and emerging global health
challenges that impact people around the world and in the United
States. Coordination is also key: we urge the Committee to request that
leaders of Department of Health and Human Services agencies work with
counterparts at the State Department and the US Agency for
International Development to develop a cross-government global health
R&D strategy to ensure that US investments are efficient, coordinated,
and streamlined.
While we have made tremendous gains in global health over the past
15 years, millions of people around the world are still threatened by
neglected diseases and conditions. In 2019, tuberculosis (TB) killed
1.4 million people, surpassing deaths from HIV/AIDS, while 1.7 million
people were newly diagnosed with HIV. Nearly half the global population
remains at risk for malaria, and drug-resistant strains are growing.
Women and children remain the most vulnerable with around 68 percent of
all global maternal and child deaths occurring in sub-Saharan Africa
and 1 out of every 13 children in the region dying before the age of 5.
These figures highlight the tremendous global health challenges that
remain and the need for sustained investment in global health R&D to
deliver new tools, both to address unmet global health needs and to
address challenges of drug resistance, toxic treatments, and health
technologies that are difficult to administer in poor, remote, and
unstable settings.
The COVID-19 pandemic has again demonstrated that we do not have
all the tools needed to prevent, diagnose, and treat many neglected and
EIDs--a reality foreshadowed by the recent Zika and Ebola epidemics.
The lifesaving effects of the first COVID-19 vaccines demonstrate the
power of having the right tools to respond to a health emergency. These
new vaccines, developed with critical funding from BARDA, NIH, and
other US government partners, are highly effective and built upon past
global health research advances. Notably, the Johnson & Johnson vaccine
is based on technology used in its Ebola vaccine and Zika, respiratory
syncytial virus, and HIV/AIDS vaccine candidates, and the Moderna-
National Institute of Allergy and Infectious Diseases (NIAID) vaccine
platform was previously being used to develop vaccines against other
respiratory viruses and the chikungunya virus. This demonstrates how
strong, sustained investment in R&D allows us to tackle today's health
threats and prepare for those of the future. The United States remains
at the forefront of global health innovation because of long-term
investments in R&D agencies such as NIH, CDC, and BARDA.
NIH: The groundbreaking science conducted at NIH has long
underpinned US leadership in biomedical research. Within NIH, NIAID,
the Office of AIDS Research, and FIC all play critical roles in
developing new health technologies that save lives at home and around
the world. FIC, in particular, is a leader in accelerating global
scientific progress through international research partnerships,
technical assistance, and training. Many FIC-trained scientists have
led their countries' responses to COVID-19, Zika, and Ebola, as well as
long-standing challenges such as HIV/AIDS. COVID-19 has underscored
that science capacity gaps remain between low- and middle-income
countries and high-income countries. With additional funding, FIC could
leverage its extensive network and training capacity to improve global
genomic surveillance and coordination. We urge Congress to request
information from FIC on how it might address global scientific capacity
gaps in modeling, genomic surveillance, researcher training, and
pandemic preparedness and urge appropriators to consider sustainably
increasing FIC's relatively modest budget by $10 million dollars in
each of the next five fiscal years to enable work in new areas.
Across NIAID, FIC, and other institutes and centers, NIH leadership
has long supported the vital role the agency plays in global health R&D
and has named global health as one of the agency's top five priorities.
It remains critical that support for NIH extend to all pressing areas
of research--including research in neglected diseases and EIDs.
CDC: CDC makes significant contributions to global health research,
particularly through CGH and NCEZID. CDC's ability to respond to
disease outbreaks is essential to protecting the health of citizens
both at home and abroad, and the work of its scientists is vital to
advancing the development of tools, technologies, and techniques to
detect, prevent, and respond to urgent public health threats. CDC
monitors 30 to 40 international public health threats each day, has
identified disease outbreaks in more than 150 countries, responded to
more than 2,000 public health emergencies, and discovered 12 previously
unknown pathogens--and in complement to these disease monitoring and
detection functions, plays a leading role in related R&D. Important
work at NCEZID includes the development of diagnostics, including the
first diagnostic test for COVID-19 with authorization from the US Food
and Drug Administration and Trioplex, a diagnostic that can
differentiate Zika, dengue, and chikungunya viruses. NCEZID is a leader
in early-stage R&D for vaccines for infectious diseases such as Nipah
virus and dengue, Lassa, and Rift Valley fevers. The Center also plays
a leading role in the National Strategy for Combating Antibiotic-
Resistant Bacteria, to prevent, detect, and control outbreaks of
antibiotic-resistant pathogens, such as drug-resistant TB.
In complement, CGH is a global leader in immunization, public
health capacity-building, and preventing, detecting, and responding to
infectious diseases. Programs at CGH--including the Divisions of Global
HIV and TB, Global Immunization, Parasitic Diseases and Malaria, and
Global Health Protection--have yielded advances in the development of
vaccines, drugs, and other tools to combat HIV/AIDS, TB, malaria, and
neglected tropical diseases like leishmaniasis and dengue fever. CGH
develops and validates innovative tools for use by US bilateral and
multilateral global health programs and leads laboratory efforts to
monitor and combat drug and insecticide resistance to ensure that
global health programs are tailored for maximum impact.
As global disease outbreaks have grown in frequency and intensity,
CDC's work in novel technology development and global health security
has only become more important. This includes the agency's work to end
the recent Ebola outbreaks in Africa through its international
leadership on the Global Health Security Agenda. GHTC supports the
funding increase to CDC proposed by the administration for FY22 and
urges the Committee to increase funding for CDC's critical global
health R&D work at CGH and NCEZID.
BARDA: BARDA plays an unmatched role in global health R&D by using
unique contracting authorities and targeted incentive mechanisms to
advance the development and purchase of critical medical technologies
for public health emergencies. BARDA partners with diverse stakeholders
from industry, academia, and nonprofits to bridge the valley of death
between basic research and advanced-stage product development for
medical countermeasures--an area where other R&D agencies do not
operate. BARDA has been a critical funder of countermeasures for
naturally occurring health security threats including EIDs such as
COVID-19, Ebola, and Zika, as well as pandemic influenza and
antimicrobial resistance. To date, BARDA's work in advancing tools for
EIDs has largely been funded through emergency supplemental funding. A
dedicated funding line of at least $300 million annually for EID R&D
would ensure that BARDA is resourced to respond quickly to future
threats, rather than wait on haphazard infusions of supplemental
funding during health emergencies.
In addition to bringing lifesaving tools to those who need them
most, investment in global health R&D is also a smart economic
investment in the United States with 89 cents of every US dollar
invested in global health R&D going directly to US-based researchers.
US government investment in global health R&D between 2007 and 2015
generated an estimated 200,000 new jobs and $33 billion in economic
growth. Investments in global health R&D today can help achieve
significant cost-savings in the future--a fact made plain by the
economic devastation of the COVID-19 pandemic.
Now more than ever, Congress must make smart investments. Global
health R&D, which improves the lives of people around the world while
supporting US health security, creating jobs, and spurring economic
growth, is a win-win.
______
Prepared Statement of Harvey Friedman, MD
I am an Infectious Disease physician scientist on faculty at the
Perelman School of Medicine of the University of Pennsylvania. My
research interest is herpes simplex virus. I am working on a vaccine
that uses messenger RNA technology for the herpes vaccine that is like
that applied to COVID 19 messenger RNA vaccines by Pfizer and Moderna.
My research has caught the interest of the public. I have received
thousands of emails from people globally expressing their hope that the
vaccine works. Most of the people are already infected with genital
herpes. Their stories are heart-wrenching! Genital herpes is not a
life-threatening infection; however, for many people, it is a life
altering infection, while for some it leads to life ending decisions.
My laboratory has focused on preventing genital herpes, but we are
now turning our attention to preventing oral herpes (HSV-1) and the
many dreaded complications of both viruses, including fever blisters,
infection of the cornea (eye), infection of the brain (encephalitis),
infection of newborns, genital herpes, increasing susceptibility to HIV
infection, and possibly contributing to dementia.
Medical research is at a point that we have the tools to come up
with vaccines that will prevent genital herpes for those not yet
infected, and approaches to rid the body of the dormant (latent) virus
as a cure for subjects already infected.
Please set a priority to establish a strategic plan and national
strategy for treating and preventing herpes infections, particularly
genital herpes.
Sincerely,
Harvey Friedman, MD, Email: [email protected], Office
address: Infectious Disease Division, 522E Johnson Pavilion, 3610
Hamilton Walk, Philadelphia, PA 19104-6073.
______
Prepared Statement of the Health Professions and Nursing Education
Coalition
The Health Professions and Nursing Education Coalition (HPNEC) is
an alliance of over 90 national organizations representing schools,
students, health professionals, and communities dedicated to ensuring
that the health care workforce is trained to meet the needs of our
diverse population. Together, the members of HPNEC advocate for
adequate and continued support for the health professions and nursing
workforce development programs authorized under Titles VII and VIII of
the Public Health Service Act and administered by the Health Resources
and Services Administration (HRSA). For fiscal year (FY) 2022, HPNEC
encourages the subcommittee to adopt at least $1.51 billion for HRSA
Titles VII and VIII programs.
The HRSA Titles VII and VIII programs are essential to educating
our health care workforce to manage health care crises, such as the
COVID-19 pandemic. The immense challenges of the pandemic have
underscored the need to increase and reshape our health workforce, and
the HRSA Titles VII and VIII programs successfully recruit, train, and
support public health practitioners, nurses, geriatricians, advanced
practice registered nurses, mental health providers, and other
frontline health care workers critical to addressing COVID-19.
Additionally, HRSA tasked Title VII and Title VIII grantees to utilize
innovative models of care, such as training providers in telehealth, to
improve patients' access to care during the pandemic.
The U.S Census Bureau projects that by 2045:
--the US population will grow by over 18%,
--more than half the country will come from a racial or ethnic
minority group, and
--one in five Americans will be over 65.
To prepare for these changing demographics, we urge Congress to
increase funding for the HRSA Title VII and Title VIII programs to
educate current and future providers that serve these ever-growing
needs while preparing for the health care demands of tomorrow.
Diversity Pipeline Programs.--The COVID-19 pandemic has underscored
the pervasive health inequities facing minority communities, as well as
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 play an essential role in improving the
diversity of the health workforce and connecting students to health
careers by supporting recruitment, education, training, and mentorship
opportunities. Inclusive and diverse education and training experiences
expose providers to backgrounds and perspectives other than their own
and heighten cultural awareness in health care, resulting in benefits
for all patients.
HRSA diversity programs include the Health Careers Opportunity
Program (HCOP), Centers of Excellence (COE), Faculty Loan Repayment,
Nursing Workforce Diversity, and Scholarships for Disadvantaged
Students (SDS). Studies have demonstrated the effectiveness of such
pipeline programs in strengthening students' academic records,
improving test scores, and helping minority and disadvantaged students
pursue careers in the health professions. Title VII diversity pipeline
programs reached over 13,500 students in the 2019-2020 academic year
(AY), with SDS graduating nearly 1,400 students, and COE reaching
nearly 5,000 health professionals, 72% of which were located in
medically underserved communities.
Title VIII's Nursing Workforce Diversity Program increases nursing
education opportunities for individuals from disadvantaged backgrounds
through stipends and scholarships and a variety of pre-entry and
advanced education preparation. In AY 2019-20, the program supported
more than 11,000 students, with approximately 45% of the training sites
located in underserved communities.
Primary Care Workforce.--The Primary Care Medicine Programs expand
the primary care workforce, including general pediatrics, general
internal medicine, family medicine, and physician assistants through
the Primary Care Training and Enhancement (PCTE) and Primary Care
Medicine and Dentistry Career Development programs. The primary care
programs are also intended to encourage health professionals to work in
underserved areas. In AY 2019-20, PCTE grantees trained over 14,000
individuals at over 1,100 sites, with 54% in medically underserved
communities and 26% in rural areas; 30% of sites trained providers in
telehealth services.
The Medical Student Education program, which supports the health
care workforce by expanding training for medical students to become
primary care clinicians, targets higher education institutions in
states with the highest primary care workforce shortages. The program
help develop partnerships among institutions, federally recognized
tribes, and community-based organizations to train medical students to
provide primary care that improves health outcomes for those living in
rural and other underserved communities. In AY 2019-2020, Medical
Student Education grantees trained over 1,100 health professionals, 88%
of which located in primary care settings, 68% in medically underserved
communities, and 66% in rural areas.
Interdisciplinary, Community Based Linkages.--Support for
community-based training of health professionals in rural and urban
underserved areas is funded through Title VII. By assessing the needs
of the local communities they serve, HRSA Title VII programs can fill
gaps in the workforce and increase access to care for all populations.
The programs emphasize interprofessional education and training,
bringing together knowledge and skills across disciplines to provide
effective, efficient, and coordinated care.
Programs such as Graduate Psychology Education (GPE), Opioid
Workforce Enhancement Program, Mental and Behavioral Health, and
Behavioral Health Workforce Education and Training (BHWET) respond to
changing delivery systems and models of care, and timely address
emerging health issues in their communities. The BHWET and Mental and
Behavioral Health programs, provide training to expand access to mental
and behavioral health services for vulnerable and underserved
populations. In AY 2019-20, nearly 50% of all BHWET and GPE grantees
provided substance use disorder treatment services.
Area Health Education Centers (AHEC) support the recruitment and
training of future physicians in rural areas and provide
interdisciplinary health care delivery sites, which respond to
community health needs. In AY 2019-20, AHECs supported 192,000 pipeline
program participants and provided over 34,000 clinical training
rotations for health professions trainees.
Title VII Geriatric Workforce programs integrate geriatrics and
primary care to provide coordinated and comprehensive care for older
adults. These programs offer training across the provider continuum,
focusing on interprofessional and team-based care and academic-
community partnerships to address gaps in health care for older adults.
To advance the training of the current workforce, the Geriatrics
Workforce Enhancement Program (GWEP) provided 2,068 unique continuing
education courses to over 200,000 faculty and practicing professionals
in AY 2019-20, including 906 courses on Alzheimer's and dementia-
related diseases.
Nursing Workforce Development.--HRSA Title VIII nursing workforce
development programs provide federal support to address all aspects of
nursing workforce demands, including education, practice, recruitment,
and retention, focusing on rural and medically underserved communities.
These programs include Advanced Nursing Education; Nursing Workforce
Diversity; Nurse Education, Practice, Quality, and Retention; NURSE
Corps; and Nurse Faculty Loan Program. In AY 2019-2020, the Title VIII
Advanced Education Nursing programs supported more than 8,000 nursing
students in primary care, anesthesia, nurse-midwifery, and other
specialty care, all of whom received clinical training in primary care
in medically underserved communities and/or rural settings.
Oral Health.--The Primary Care Dentistry program invests in
expanding programs in primary dental care for pediatric, public health,
and general dentistry. The Pre- and Postdoctoral Training, Residency
Training, Faculty Development, and Faculty Loan Repayment programs
encourage integrating dentistry into primary care.
Public Health.--Public Health Workforce Development programs
support education and training in public health and preventive medicine
through different initiatives, including the only funding for
physicians to work in state and local health departments. Public health
student trainees partnered with 278 sites in AY 2019-20, with 74% of
these training sites located in medically underserved communities and
29% in primary care settings.
Workforce Information and Analysis.--The Workforce Information and
Analysis program provides funding for the National Center for Health
Workforce Analysis as well as grants to seven Health Workforce Research
Centers across the country that perform and disseminate research and
data analysis on health workforce issues of national importance.
While HPNEC's members acknowledge the competing demands facing
appropriators, funding for HRSA's workforce development programs is
critical to creating a culturally competent workforce that can respond
to future health threats and challenges facing all Americans.
Therefore, HPNEC encourages the subcommittee to provide at least $1.51
billion in the FY 2022 appropriations bill for HRSA's Title VII and
VIII programs to continue the nation's investment in our health
workforce.
______
Prepared Statement of the Hearing Industries Association and the
Hearing Loss Association of America
Dear Chairwoman Murray, Ranking Member Blunt, and Members of the
Subcommittee,
Thank you for the opportunity to submit testimony concerning Fiscal
Year 2022 (FY22) Labor, Health and Human Services, Education and
Related Agencies appropriations. The Hearing Industries Association
(HIA) and the Hearing Loss Association of America (HLAA) are requesting
inclusion of report language to direct the National Institutes of
Health (NIH) Office of the Director to provide an accounting of funds
currently used for hearing screening research and encourage NIH to
prioritize funding for studies that address the research needs and gaps
identified by the U.S. Preventive Services Task Force (USPSTF).
HIA is the national organization of the manufacturers, suppliers
and distributors of hearing aids, implants, assistive listening
devices, component parts and power sources. HIA's mission is to be a
trusted voice on product innovation, patient safety and education, and
public policy. HLAA is the nation's leading organization representing
consumers with hearing loss and seeks to enable people with hearing
loss to live life fully and without compromise. We are pleased to work
together to support the more than 38 million individuals in the United
States with untreated hearing loss,\1\ including one in three people
between the ages of 65 and 74 and over half of those older than 75.
Hearing loss is associated with many comorbidities, including cognitive
decline, dementia, falls, depression, reduced quality of life, and an
increased number of emergency department visits and hospitalizations.
---------------------------------------------------------------------------
\1\ ``How Many People Have Hearing Loss in the United States?'',
Johns Hopkins Cochlear Center for Hearing and Public Health, https://
www.jhucochlearcenter.org/how-many-people-have-hearing-loss-unaited-
states.html.
---------------------------------------------------------------------------
In March 2021, the USPSTF, a volunteer panel of national experts in
prevention and evidence-based medicine tasked with providing
recommendations regarding preventive screening and services, issued its
final recommendations regarding hearing screening for older adults over
the age of 50. The USPSTF ultimately declined to make a recommendation
in support of hearing screening, finding that ``current evidence is
insufficient to assess the balance of benefits and harms of screening
for hearing loss in older adults.'' \2\ The final recommendation notes
that more research is needed.
---------------------------------------------------------------------------
\2\ https://www.uspreventiveservicestaskforce.org/uspstf/
recommendation/hearing-loss-in-older-adults-screening.
---------------------------------------------------------------------------
We understand the gaps in research identified by the USPSTF's
recommendations and agree that additional research to support a
universal hearing screening recommendation for older adults is needed.
Given the significant associated comorbidities of hearing loss
discussed below, we also believe this research should be prioritized.
Therefore, we urge this Subcommittee to support inclusion of report
language to convey the importance of building the research base for
older adult hearing screening, as follows:
Hearing Health Screening. The Committee recognizes the associated
comorbidities and costs of untreated hearing loss and, with the growing
aging population, the importance of hearing screening for older
Americans. The Committee directs the National Institutes of Health
(NIH) Office of the Director to provide an accounting of all funds used
for hearing screening research across all Institutes within 90 days of
enactment of this Act. The Committee encourages NIH to prioritize
funding through the Office of the Director and engage appropriate
Institutes like the National Institute on Deafness and Other
Communication Disorders (NIDCD) and National Institute on Aging (NIA)
for studies that address the research needs and gaps identified by the
U.S. Preventive Services Task Force (USPSTF). These research needs may
include gaps identified in USPSTF review of hearing screening
recommendations for older Americans.
Earlier diagnosis of hearing loss and appropriate intervention are
crucial to avoiding the negative social, emotional, and health
consequences of hearing loss. Age-related hearing loss is the third
leading cause of chronic disability in older adults and has shown to be
associated with predisposing cognitive impairment and dementia.\3\
According to the Lancet Commission, as of 2020, there are twelve
behaviorally modifiable risk factors associated with dementia
prevention, accounting for approximately 40 percent of dementias
globally. Of note, hearing impairment accounts for approximately nine
percent of the modifiable risk and the Lancet Commission recommends
reducing noise-related hearing loss and treating hearing loss with the
use of hearing aids.\4\ Additionally, a recent study found that mild
hearing loss doubled the risk of dementia, moderate loss tripled risk,
and those with severe hearing impairment were five times more likely to
develop dementia.\5\ Emerging evidence indicates that hearing
interventions can delay the onset or reduce the rate of cognitive
decline.\6,7\ Additional studies, including the Aging and Cognitive
Health Evaluation in Elders (ACHIEVE) study,\8\ are expected to further
address the role and efficacy of hearing treatment in reducing
cognitive decline in older adults.
---------------------------------------------------------------------------
\3\ Jafari Z, Kolb BE, Mohajerani MH. Age-Related Hearing Loss and
Tinnitus, Dementia Risk, and Auditory Amplification Outcomes. Ageing
research reviews. 2019:100963.
\4\ Livingston G, Huntley J, Sommerland A, et al. Dementia
prevention, intervention, and care: 2020 report of the Lancet
Commission. Lancet. 20202 [Aug 8]; 396 (10248); 413-446.
\5\ ``The Hidden Risks of Hearing Loss'', Johns Hopkins Medicine,
https://www.hopkinsmedicine.org/health/wellness-and-prevention/the-
hidden-risks-of-hearing-loss.
\6\ Maharani A, Dawes P, Nazroo J, Tampubolon G, Pendleton N, on
behalf of the SENSE-Cog WP1 group. Am Geriatr Soc. 2018;66(6):1130-
1136. https://agsjournals.onlinelibrary.wiley.com/doi/abs/10.1111/
jgs.15363.
\7\ Sarant J, Harris D, Busby P, Maruff P, Schembri A, Lemke U, &
Launer S (2020). The Effect of Hearing Aid Use on Cognition in Older
Adults: Can We Dely Decline or Even Improve Cognitive Function? Journal
of Clinical Medicine, 9(1), 254.
\8\ https://clinicaltrials.gov/ct2/show/NCT03243422.
---------------------------------------------------------------------------
As hearing loss progresses, it manifests via profound consequences
on verbal communication and social, functional, and psychological
wellbeing of the person. The National Institutes of Health (NIH) has
found that over 78 percent of participants with insufficient or poor
hearing suffered from at least one additional chronic condition,
leading to increased health care costs in any given year.\9\ For adults
over 60 years of age, untreated hearing loss is associated with
approximately 46 percent higher total health care costs over a 10-year
period compared with costs for those without hearing loss.\10\ People
with even a mild hearing loss are also three times more likely to fall,
compared to individuals with normal hearing.\11\ When hearing loss does
occur, early diagnosis and intervention are crucial for avoiding the
negative social, emotional, and health consequences already described.
---------------------------------------------------------------------------
\9\ Maharani A, Dawes P, Nazroo J, Tampubolon G, Pendleton N, on
behalf of the SENSE-Cog WP1 group. Am Geriatr Soc. 2018;66(6):1130-
1136. https://agsjournals.onlinelibrary.wiley.com/doi/abs/10.1111/
jgs.15363.
\10\ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6439810/.
\11\ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3518403/.
---------------------------------------------------------------------------
There is evidence that rates of hearing loss begin to rise around
the age of 50, but the prevalence of hearing loss dramatically
increases as an individual grows older (Figure 1).\12\ Individuals may
underestimate their hearing difficulty and fail to pursue potentially
beneficial treatment for their hearing loss that could lead to better
health outcomes. Thus, hearing screening should be a part of every
wellness check or physical exam for older adults, the population most
at risk of age-related hearing loss.
---------------------------------------------------------------------------
\12\ Jorgensen, L. & Novak, M. (2020). Factors Influencing Hearing
Aid Adoption. Seminars in Hearing, 41(1), 7. https://doi.org/10.1055/s-
0040-1701242.
---------------------------------------------------------------------------
Figure1.
As the Subcommittee develops its FY22 Labor-HHS-Education
appropriations bill and accompanying report language, we respectfully
request your support for the millions of Americans suffering from
hearing loss by encouraging NIH to pursue hearing screening research.
Hearing health is essential and hearing screening is the first step. We
look forward to working with you and appreciate your attention to this
important issue.
[This statement was submitted by Kate Carr, President, Hearing
Industries
Association, and Barbara Kelley, Executive Director, Hearing Loss
Association of America.]
______
Prepared Statement of the Hepatitis B Foundation
hepatitis b foundation recommendations for fiscal year 2021
appropriations
_______________________________________________________________________
National Institutes of Health
--Along with the biomedical research community, the Hepatitis B
Foundation (HBF) supports the President's request for $51
billion for the National Institutes of Health. While we are
anxious to see the details of the President's request,
specifically the details of the proposed ARPA-H initiative, we
appreciate President Biden's commitment to allowing for
meaningful growth in the base budget and expanding NIH's
capacity to support promising science in all disciplines.
--HBF commends NIAID, NIDDK, NCI for the development of a Trans-NIH
Strategic Plan to Cure Hepatitis B and urges the Institutes to
issue targeted calls for research to implement and fund the
Strategic Plan.
Centers for Disease Control and Prevention
--HBF supports $10 billion for the Centers for Disease Control and
Prevention programs in FY 2021, and within that $134 million
for the Division of Viral Hepatitis. HBF further urges the CDC
to allocate the necessary resources to address serious
surveillance shortcoming without adversely impacting other CDC
hepatitis B programs.
--HBF urges the Division of Viral Hepatitis to fund both the
Hepatitis B and the Hepatitis C community infrastructure grants
in order to maintain and grow progress to address the public
health threats of both hepatitis B and hepatitis C.
HHS Office of the Secretary
--HBF supports the newly released Viral Hepatitis National Strategic
Plan and urges the establishment of an office or initiative to
lead this elimination strategy and the provision of adequate
staff and other resources needed for success.
_______________________________________________________________________
Mrs. Chairwoman and Members of the Subcommittee, thank you for the
opportunity to provide testimony as you consider funding priorities for
Fiscal Year (FY) 2022. 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.
Mrs. Chairwoman, HBF strongly supports the President's $51 billion
request for NIH funding in FY 2022. 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 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 $10 billion for the Centers for Disease
Control and Prevention in the FY 2022 bill. Within that total, we join
the Hepatitis Appropriations Partnership in urging $134 million for the
CDC's Division of Viral Hepatitis.
Finally, we would urge that the newly released Viral Hepatitis
National Strategic Plan be led and funded fully as necessary to move us
toward the goal of the elimination of viral hepatitis in the United
States.
recognizing the leadership of the subcommittee
Mrs. 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 President's request for $51
billion for the NIH. We look forward to learning more about the
proposed ARPA-H initiative to accelerate the implementation of research
findings. While we appreciate the President's bold vision to promote
transformational innovations against the range of diseases facing
humankind, we want to be sure 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 at
least $38.7 million a year for 6 years to fund identified research
opportunities that would help cure and eliminate the disease once and
for all. The Hepatitis B Foundation appreciated the creation of the
Hepatitis B Trans-NIH Working Group and was even more encouraged by the
release of a Strategic Plan for Trans-NIH Research to Cure Hepatitis B
in December of 2019. Report language is requested in the FY 2022 Report
urging the NIAID and NIDDK to issue targeted calls for hepatitis B
research proposals in FY 2022 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 $66 million in FY 2021.
There is the need, the know- how, and the tools to find a cure that
will bring hope to almost 300 million people worldwide suffering from
chronic hepatitis B. A cure was accomplished for hepatitis C with
increased federal attention and funding. It can be accomplished for
hepatitis B as well. Each year, despite an effective vaccine, 3-7
million people worldwide are 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%.
In addition to the devastating toll on patients and their families,
ignoring hepatitis B is costing the United States an estimated $4
billion per year in medical costs. By increasing the NIH budget for
hepatitis B we have a good chance of success in finding a cure in the
next few years. There are exciting new research developments and
opportunities in the field that make finding a cure very possible.
Centers for Disease Control and Prevention
Given the challenges and burdens of chronic disease and disability,
public health emergencies, new and reemerging infectious diseases and
other unmet public health needs, HBF joins the 140 organizations in the
CDC Coalition and urges a funding level of at least $10 billion for
CDC's programs in FY 2022. This is $1.3 billion 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 $134 million for the DVH in FY 2022 and within this level
urges the Division to fund both the Hepatitis B and Hepatitis C
community infrastructure grants. To discontinue one of these grants
would be a step backward in the progress being made.
The CDC Division of Viral Hepatitis spends less than 10% of its
budget on HBV focused projects, despite hepatitis B infected patients
comprising more than 35% of all those infected with viral hepatitis in
the U.S. Furthermore, tremendous HBV-related health disparities exist
for Asian Americans and Pacific Islanders and recent African
immigrants. These groups represent less than 6% of the U.S. population
but make up 50%-80% of the U.S. burden of chronic HBV infection. CDC
has not adequately addressed the issue of chronic HBV infections among
high-risk, foreign-born populations and their children. Of particular
concern is that the CDC surveillance program is not robust enough to
accurately report the prevalence of hepatitis B in high incidence
states such as California and Hawaii. In view of the fundamental
importance of good surveillance data to develop, manage and analyze
public health programs and interventions, HBF urges CDC to allocate the
necessary resources to address this shortcoming without adversely
impacting other CDC hepatitis B programs.
HBF is further concerned that despite the availability of an
effective hepatitis B (HBV) vaccine, less than 25% of adults age 19 and
older are vaccinated. According to CDC's most recent survey of
Vaccination Coverage Among Adults, this poor vaccination rate remains
flat and has not improved in several years. We are encouraged that CDC
is evaluating new universal HBV vaccination recommendations including a
comprehensive plan to increase adult HBV vaccinations. The CDC is
further urged to promote awareness about the importance of hepatitis B
vaccination among medical and health professionals, communities at high
risk, and the public, and to improve collaboration and coordination
across CDC to achieve this goal.
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 HIV Medicine Association
Chairwoman Murray, Ranking Member Blunt, and members of the
Subcommittee, my name is Dr. Marwan Haddad, MD, MPH, Chair-elect 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 Center 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. Many of them have been on
the frontlines of their community's coronavirus (COVID-19) response.
For the FY2022 appropriations process, we urge you to increase
funding for the Ryan White HIV/AIDS Program at the Health Resources and
Services and Administration (HRSA); increase funding for the Centers
for Disease Control and Prevention's (CDC) HIV, hepatitis, and STD
prevention programs; increase investments in HIV research supported by
the National Institutes of Health (NIH); appropriate additional funding
to support the ``Ending the HIV Epidemic'' (EHE) Initiative; and the
implementation of the EHE initiative as well as the response to the
COVID-19 pandemic. As the United States responds to the global COVID-19
pandemic, it is paramount to provide robust funding for public health,
including these vital programs which support global and domestic health
security measures and our public health infrastructure.
The funding requests in our testimony largely reflect the consensus
of the Federal AIDS Policy Partnership, a coalition of HIV
organizations from across the country. For a chart of current and
historical funding levels, along with coalition requests for each
program, please click here.
ending the hiv epidemic initiative--u.s. department of
health and human services
Over the last two years, on a bipartisan basis, Congress has
appropriated funding for the EHE Initiative, which sets the goal of
reducing new HIV infections by 50% by 2025, and 90% by 2030. We
recommend funding the EHE initiative at least at the President's budget
request for $670 million in support of ending HIV as an epidemic to be
used for expanded access to antiretroviral treatment and PrEP to
prevent HIV transmissions as well as improved access to routine and
critical health services.
health resources and services administration--hiv/aids bureau
HRSA's Ryan White HIV/AIDS Program provides medical care and
treatment services to over half a million people living with HIV. Over
three-quarters of Ryan White clients are Black, Latinx or other people
of color, and nearly two-thirds have incomes under the federal poverty
level. To continue providing comprehensive, life-saving treatment and
to bring many more people into care through the EHE Initiative, we urge
Congress to fund the Ryan White HIV/AIDS Program at a total of $2.768
billion in FY2022, an increase of $345 million over FY2021. We strongly
recommend providing at least $222 million in EHE funding for the Ryan
White Program.
HIVMA urges an allocation of $225.1 million, or a $24 million
increase over current funding, for Ryan White Part C programs. The
flexibility of the Ryan White Program and its providers' expertise has
also allowed Part C clinics to respond to the changing needs of
patients and the health care system throughout the COVID-19 pandemic.
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, including overdose prevention and harm reduction
services, needed to prevent, intervene, and treat substance use
disorder as well as related infectious diseases, including HIV, HCV,
and sexually-transmitted infections (STI).
CHCI's Ryan White-Funded Clinic in Connecticut is Leading on Expanding
Access to HIV Prevention, Care, & Treatment
CHCI's Center for Key Populations, Ryan White-funded Early
Intervention Services Program, has served as the leading source of HIV
primary care in Connecticut for 22 years. Each year our Ryan White
program serves more patients from almost every city and town across
Connecticut.
The needs of both established and newly diagnosed patients with HIV
are growing more complex. In 2020, even as HIV care was innovatively
transformed to mostly telehealth due to COVID-19, 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
2020, 69% self-reported as racial and ethnic minorities and 56%
reported food and housing insecurity as major barriers to achieving
optimal healthcare. Additionally, 4% of all Ryan White patients were
uninsured, 87.9% had at least one clinical co-morbidity, and 62%
reported unmet mental health needs at the time of intake. Among Ryan
White Program patients at CHCI, 12% reported unstable housing, which
means they were living in a shelter, vehicle, or completely
unsheltered, creating additional challenges to retention in care.
CHCI's Ryan White Program eligible patients who are engaged in care
are screened for substance use disorders routinely and 63% screened
positive with 11% 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 during the COVID-19 pandemic. 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
healthcare outcomes for all patients.
health resources and services administration--bureau of
primary health care
We recommend appropriating $152 million in new funding for HRSA's
Community Health Center program for the EHE initiative. In those
community health centers funded by the EHE Initiative, they were able
to increase PrEP uptake from 19,000 in 2020 to nearly 50,000 people in
early 2021. CDC estimates only 10% of those who could benefit from PrEP
have had it prescribed to them, and those who need it most--black and
Latino gay and bisexual men at high risk--are prescribed it at a much
lower rate. Scaling up PrEP among the most affected populations is
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 the 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, the 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 million overall increase above FY2021 levels for a total of $2.045
billion.
For the Division of HIV/AIDS Prevention (DHAP), we request a total
of $1.293 billion, which is a $328 million increase over FY2021 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 $371 million requested by the Administration for the EHE
initiative, allowing the CDC to scale up HIV testing to ensure early
diagnosis and care linkage and PrEP programs to prevent new infections.
Additionally, we urge the appropriation of $120 million for the CDC
to fund surveillance and programming to monitor and prevent opioid-
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 respond to increases in serious infections linked to substance use,
including HIV, hepatitis B and C, and life-threatening bacterial
infections such as endocarditis.
For the Division of Viral Hepatitis (DVH), we request a total of
$134 million, which is a $94.5 million increase over FY2021 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 eliminate hepatitis as a
public health threat.
For the Division of STD Prevention (DSTDP), we request a total of
$272.9 million, which is a $111.1 million increase over FY2021 levels.
For the sixth year in a row, the CDC reports dramatic increases in STIs
in the U.S. These historic increases have created a public health
emergency with devastating long-term health consequences, including
infertility, cancer, HIV transmission, and infant and newborn deaths.
national institutes of health--office of aids research
In order to advance discoveries important to end HIV epidemic as an
epidemic, including improved HIV prevention modalities and treatment
options and ultimately a cure and a vaccine, we ask that at least
$3.854 billion be allocated for HIV research in FY2022, an increase of
$755 million over FY2021. The return on investment in HIV research
extends beyond HIV and includes contributing to the record-breaking
timelines for the development of COVID-19 vaccines.
indian health service--eliminating hiv and hepatitis c in indian
country
Between 2011 and 2015, there was a 38% increase in new HIV
diagnoses among the American Indian/Alaska Native population overall,
and a rise of 58% among AI/AN gay and bisexual men. We urge for the
Indian Health Service component of the EHE Initiative to be funded at
$27 million.
conclusion
The COVID-19 pandemic highlights the importance of preparing for
infectious diseases outbreaks by fully funding programs that support
public health services, infrastructure and workforce so that we are
better prepared for the next pandemic. Thank you for your time and
consideration of these important requests and for strengthening our
nation's ability to end the HIV epidemic in the U.S. Please contact me
or HIVMA's Senior Policy & Advocacy Manager, Jose A. Rodriguez, at
[email protected], if you have any questions or need additional
information. HIVMA is located at 4040 Wilson Boulevard Suite 300,
Arlington, VA 22203.
[This statement was submitted by Marwan Haddad, MD, Chair-elect,
HIV
Medicine Association, MPH.]
______
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 2022 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.
This June 5th our nation commemorated the 40th anniversary of AIDS.
Over the last four decades the U.S. has made great advances in HIV
prevention, care, and treatment; but much work remains. While between
2015 and 2019 the U.S. saw slight decreases in the number of new HIV
infections, disparities continue to exist, and some populations saw
increases in infections. HIV continues to disproportionately impact
Black and Latino gay men, Black women, people who inject drugs, and who
live in the South. The Centers for Disease Control and Prevention (CDC)
reports that over half of all new HIV infections in 2019 were in the
South. Recently, the Department of Health and Human Services released
updated strategic plans to guide our nation in responding to the HIV
and hepatitis epidemics, including for the first time ever calling for
the elimination of viral hepatitis. In each of the plans, the need to
address the syndemics of HIV and hepatitis is prioritized.
As our country continues to respond and recover from the COVID-19
pandemic, which has impacted HIV and hepatitis services, we know we
have the science to end two other infectious diseases that have been
impacting our country for decades: HIV and hepatitis C. While there
still is no cure or vaccine for HIV, we have preventive tools along
with treatments that suppress the virus, and together can bring the
number of new infections down to a point that we can end HIV. For
hepatitis C, there are curative treatments. However, federal leadership
and funding for our public health system is necessary to ramp up
efforts to address these two epidemics. The programs and funding
increases detailed below are pivotal to our nation's ability to end
both HIV and hepatitis.
ending the hiv epidemic in the u.s.
Over the past two years, Congress has appropriated over $400
million in new 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. Priority jurisdictions have
used initial funding to develop ending HIV plans with the help of
community partners that build on existing HIV programs and utilize new
innovations and strategies. Even while battling COVID, the Ryan White
HIV/AIDS Program reports that in these priority jurisdictions, with the
additional funding, they were able to bring nearly 6,300 new clients
into the program and re-engage an additional 3,600 between March and
August of 2020. In the community health centers funded by the EHE
initiative, they were able to increase pre-exposure prophylaxis (PrEP)
uptake from 19,000 in 2020 to nearly 63,000 people within 11 months.
We are pleased that President Biden has proposed to increase
funding for the Ending the HIV Epidemic initiative by $267 million as
part of his FY22 budget. Additionally, the Biden administration has
proposed increases in other domestic HIV programs. Since many of these
increases fall short of what was proposed last year and what is needed,
we urge the Congress to do better and significantly increase funding
for the Ending the HIV Epidemic in the U.S. initiative for FY2022 so
that this important work can be properly ramped up. In particular we
ask for increased funding for the following programs:
--CDC Division of HIV/AIDS Prevention for testing, linkage to care,
and prevention services, including PrEP (+$196 m);
--HRSA Ryan White HIV/AIDS Program to expand comprehensive treatment
for people living with HIV (+$107 m); and
--HRSA Community Health Centers to increase clinical access to
prevention services, particularly PrEP (+$50 m)
The success of the EHE initiative rests upon our underlying public
health prevention, care, and treatment programs at the CDC and HRSA.
Congress must ensure that these are adequately 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. For over 30 years,
the Ryan White program has pioneered innovative models of care which
has resulted in 88 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 economic impact of COVID-
19, and state and local budgets have become increasingly stressed.
Without increased funding some ADAPs may be forced to institute wait
lists for medications or other cost containment measures. We urge
Congress to fund the Ryan White HIV/AIDS Program at a total of $2.768
billion in FY2022, an increase of $345 million over FY2021 including an
increase of $68 million for ADAPs for total funding of $968.3 million.
In addition, HIV+Hep opposes any efforts through the appropriations
process to alter the intent of the program to use Ryan White-derived
funds for activities outside the scope of the original intent of
current legislative language.
The CDC Division of HIV Prevention funds state and local public
health departments and community-based organizations to implement and
enhance targeted, tailored, and high-impact prevention programs aimed
at addressing racial and geographic health disparities. This includes
HIV testing, condom distribution programs, and other HIV awareness
campaigns. CDC also funds our national surveillance system which is
critical to identifying new HIV clusters and outbreaks and provides the
data necessary to tailor resources and programming. Funding from the
CDC also allows communities to focus on increasing access to and use of
PrEP, which is critical to ending the HIV epidemic. Recent CDC data
show that in 2019, nearly 285,000 or 23 percent of people eligible for
PrEP were prescribed it, up from 3 percent in 2015. While this increase
is moving in the right direction, some of the communities most in need
of PrEP are not receiving it and we must continue building programs to
provide outreach to communities and education about PrEP.
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
We respectfully request that you provide increased funding for
viral hepatitis programs at the CDC. The CDC estimates that more than
4.5 million people in the United States live with hepatitis B (HBV) or
hepatitis C (HCV), with nearly half unaware they are living with the
disease. The opioid epidemic has significantly increased the number of
viral hepatitis cases in the United States, with available data
suggesting that more than 70 percent of 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. The number of acute hepatitis C cases reported in the U.S.
has increased every year since 2012. CDC recently reported an increase
of 63 percent in acute hepatitis C cases between 2015 and 2019, with 67
percent of the cases in 2019 associated with injection drug use.
CDC Division of Viral Hepatitis
The viral hepatitis programs at the CDC are severely underfunded,
receiving only $39.5 million-far short of what is needed to build and
strengthen our public health response and to eventually end hepatitis.
States' ability to conduct enhanced HCV surveillance activities is
severely hampered by a lack of funding. Additional resources would
allow the CDC to enhance testing and screening programs, link people to
treatment, conduct additional provider education, and increase services
related to hepatitis outbreaks and injection drug use. We urge you to
provide the CDC Division of Viral Hepatitis with $134 million, an
increase of $94.5 million over FY 2021 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. Providing full support for this program is another key step in
preventing new cases of viral hepatitis and HIV and putting the country
on the path towards elimination. We urge the committee to fund this
program to eliminate opioid-related infectious diseases at no less than
$120 million, an increase of $107 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.
In conclusion, we urge the committee to continue its investment in
our nation's public health infrastructure specifically as it relates to
addressing the ongoing HIV and HCV epidemics. Fortunately, we have the
tools available to end both these epidemics; however, we must provide
the necessary resources to achieve these goals.
[This statement was submitted by Carl Schmid, Executive Director,
HIV+Hepatitis Policy Institute.]
______
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), in
fiscal year (FY) 2022.
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 2020 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 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 and
$375.3 million for NIOSH, including $34 million for the Education and
Research Centers (ERCs) in FY 2022. 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 Peter Hancock, DSc, PhD,
President, and
Steven C. Kemp, CAE, Executive Director, Human Factors and Ergonomics
Society.]
______
Prepared Statement of I AM ALS
Chairwoman Murray, Ranking Member Blunt thank you for the
opportunity to submit written testimony. My name is Brian Wallach and I
have enjoyed the opportunity to work with both of you and your
colleagues in the Senate ALS Caucus over the past several years.
I am grateful for all you and your colleagues have done for the ALS
community. Thanks to you and others like Senators Dick Durbin, Lisa
Murkowski, Chris Coons, and Mike Braun, and our incredible ALS
grassroots advocates, we have increased federal spending on ALS
research by $83 million in just two years. And this past December,
Congress overwhelmingly passed a bill to give ALS patients access to
SSDI benefits upon diagnosis, averting bankruptcy for so many.
As a result of this work, the path towards ending ALS is clearer.
The question now is when do we reach the end of that path and will any
of those of us living with ALS now be here to see that day?
I desperately want to be here, but my body is failing. You can hear
it in my voice and see it in the videos I post on Twitter. Odds are
that unless something changes, I won't be. The average patient lives 2-
5 years post-diagnosis and of those diagnosed in 2017 with me, four out
of five-80%-are dead.
So I come with two urgent asks. Ones that if you make real will
change my and millions of others' futures.
First, fund ARPA-H and include ALS among its core disease areas.
During the 2020 campaign then-candidate Joe Biden promised ALS patient
Ady Barkan that he would seek to create ARPA-H, modeled after DARPA, to
solve issues relating to the diagnosis and treatment of disease. He
also promised that ALS-along with cancer, diabetes and Alzheimer's-
would be among the first diseases it tackled.
I was elated when President Biden's administration submitted a
proposal to fund ARPA-H to Congress. I was devastated when I saw that
only ALS was left out of the list of identified diseases it would
target.
To cure ALS, we need an ARPA-H. We need both a focus on high risk/
high reward research and to break down the antiquated, bureaucratic red
tape facing ALS patients seeking promising therapies. Moreover, if we
cure ALS, we can help unlock cures for Alzheimer's, Parkinson's,
Frontotemporal Dementia and beyond.
Today, despite the increases in funding over the last 2 years, our
government still spends less than $6,000 on ALS research per year per
person in the U.S. living with ALS. You have the power to fix this by
putting ALS back into ARPA-H.
Second, we need you to hold the FDA accountable for failing ALS
patients by denying any type of approval for two promising therapies
this year. On June 7th, we watched the FDA grant accelerated approval
of aducanumab for the treatment of Alzheimer's disease and wondered why
that same urgency has not been applied to ALS.
In September 2019, FDA released an updated Guidance for ALS
Clinical Trials. It stressed the need for ``regulatory flexibility in
applying the statutory standards to drugs for serious diseases with
unmet medical needs.'' The Guidance explicitly stated that ``[w]hen
making regulatory decisions about drugs to treat ALS, FDA will consider
patient tolerance for risk and the serious and life-threatening nature
of the condition in the context of statutory requirements for safety
and efficacy.''
The first two tests of FDA's promise of regulatory flexibility and
urgency for ALS came this year with AMX0035, an oral medication, and
NurOwn, a stem cell therapy. The Phase II/III trial for AMX0035 showed
that AMX0035 slowed the progression of ALS and enabled patients on
average to live 6.5 months longer. NurOwn's Phase III trial did not
show the same overall benefit, but did show a ``clinically meaningful''
slowing of progression for a subgroup of ALS patients.
FDA's response: No approval for either therapy. No regulatory
flexibility. No consideration of the terminal nature of ALS. No regard
for the tens of thousands of patients, caregivers and advocates who
signed petitions to the FDA pleading for access to these therapies.
Instead, the FDA reverted to the same inflexible position for both
therapies: they asked each company to run another large, long placebo-
controlled trial and then come back. Let me make crystal clear what
these two decisions by FDA mean: at best these therapies won't be
accessible to patients for 4 years. By then nearly every ALS patient
alive today will be dead.
Why weren't these therapies approved? Both therapies showed
efficacy for at least a subgroup of ALS patients. And if the concern
was safety, both trials showed a strong safety profile-particularly in
the context of a 100% fatal disease. Moreover, the denials deprived
patients of the chance to access FDA-regulated drugs under the
supervision of an ALS specialist. So, instead, patients are forced to
try to replicate the formula for AMX0035 on their own and to travel
abroad for risky stem cell procedures.
I've been told that the FDA has claimed to members of Congress and
their staff that they are doing everything they can and that there was
nothing else they could do with respect to these two therapies. This is
simply not true or, if FDA actually believes this, they have provided
Congress a clarion call to reform how FDA regulates treatments for
diseases like ALS.
I am a former federal government employee. I come from a family of
former and current federal government employees. I truly believe the
FDA is filled with honorable, dedicated public servants. However, their
actions here are impossible to square with their own Guidance. This is
most clearly demonstrated by the fact that AMX0035 appears headed
towards approvals in Canada and Europe based on the same data presented
to FDA. FDA stands alone as an immovable obstacle.
I implore Congress to hold hearings on these denials to bring
transparency and accountability to a process that has left the ALS
community devastated.
In addition to hearings, I ask you to pass and fund 2 bills to
ensure this does not happen again. Over the last year, the fight
against COVID-19 showed how much regulatory flexibility FDA has when it
wants to use it. Since FDA appears unwilling to use it to give ALS
patients a chance to live, we have worked with members of Congress to
reform how FDA approaches diseases like ALS.
The first, ACT for ALS, will, among other items, make a significant
amount of funding available to establish expanded access programs.
Programs that will make promising therapies available to ALS patients
now while fueling additional research into a therapy's safety and
efficacy.
The second, The Promising Pathways Act, will, among other things,
allow for conditional approval of promising therapies after Phase II
for life-threatening diseases like ALS. This would put us on par with
Europe.
Today, the science needed to cure ALS is moving faster than ever
and finally producing therapies that may be able to slow or stop this
disease. This reality must be matched by a new regulatory approach that
speeds promising therapies to patients. As I have outlined, despite
programs aimed to do just that which have worked in other diseases, we
do not have that approach for ALS today. It is our moral obligation to
change this broken approach for all those facing ALS just as we did for
HIV and cancer.
If we do, I will have a chance to see my daughters graduate from
kindergarten, high school, and college.
You have the power to make that happen.
I thank you for having the courage to do so.
And I look forward to working with each of you to finally defeat
ALS.
[This statement was submitted by Brian Wallach, Co-Founder, I AM
ALS.]
______
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 FY2022 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 $10 billion for
the Centers for Disease Control and Prevention (CDC), $46.111 billion
for the National Institutes of Health (NIH), $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,
routine immunization rates have fallen, and access to care for diseases
like HIV has been disrupted. In addition, high levels of antibiotic use
likely exacerbated existing antibiotic resistance, deepening the need
for antimicrobial stewardship, surveillance and new antimicrobial
drugs. 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 $672 million in funding for the Antibiotic Resistance
Solutions Initiative in FY2022. IDSA members see the impact that
antimicrobial resistance (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. If we do not act now, by 2050 antibiotic resistant infections
are expected to be the leading cause of death in the world.
We therefore recommend $672 million for the Antibiotic Resistance
Solutions Initiative to achieve the goals outlined in the 2020-2025
National Action Plan for Combating Antibiotic-Resistant Bacteria. The
ARSI is the cornerstone of the nation's efforts to detect, prevent, and
respond to AMR. 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, sexually transmitted infections, health care
associated infections and global health. Increased funding would help
expand antibiotic stewardship across the continuum of care; double
grant awards at the state and local level; expand the Antibiotic
Resistance 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 activities. 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 for 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 FY2022.
Increased funding is vital to achieving the plan's goals, including a
20 percent decrease in health care-associated antibiotic-resistant
infections and a 10 percent drop in community-acquired antibiotic-
resistant infections by 2025.
Advanced Molecular Detection
Advanced Molecular Detection (AMD) strengthens CDC's epidemiologic
and laboratory expertise to effectively detect and track pathogens,
including how they mutate, to inform responses and improve clinical
care of patients. AMD provides more rapid identification of pathogens
which can positively benefit antimicrobial stewardship to improve
patient outcomes and reduce AMR. Requested FY2022 funding of $60
million would further enhance federal, state and local laboratory
capabilities and spur innovation, including through further integration
of genomics and other advanced laboratory technologies into AMR
surveillance. Increased funding would help CDC apply the work of
SPHERES, a national genomics consortium led by AMD that coordinates
large-scale, rapid SARS-CoV-2 sequencing across the U.S., to bolster
AMR surveillance, detection and response.
National Healthcare Safety Network
FY2022 funding of $100 million for the National Healthcare Safety
Network (NHSN) will enable the program to meet its current and
projected demands. Requested funding would expand data collection on
antibiotic use and resistance in health care facilities as outlined in
the 2020-2025 National Action Plan for Combating Antibiotic-Resistant
Bacteria. In 2020, many additional health care facilities began
reporting COVID-19 data to NHSN, and new funding will help expand that
reporting to include antibiotic use and resistance data. FY2022 funding
would help achieve the National Action Plan goals for 75 percent of
acute care hospitals and 25 percent of critical access hospitals
reporting to the NHSN Antibiotic Resistance Option and 100 percent of
acute care and 50 percent of critical access hospitals reporting to the
NHSN Antibiotic Use Option. These data 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.
CDC Center for Global Health
IDSA urges the Subcommittee to provide $857.8 million in FY2022
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 current COVID-19 tragedy in India and Brazil underscores the
critical importance of global public health infrastructure. 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) and 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 and 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 Methicillin-resistant
Staphylococcus aureus (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. To help achieve the plan's goals to accelerate
basic and applied research for developing new antibiotics and other
products, $300 million in FY2022 funding is needed. This funding will
help prevent a situation in which we lose many modern medical advances
that depend upon the availability of antibiotics, such as cancer
chemotherapy, organ transplantation and other surgeries.
Project BioShield Special Reserve Fund (SRF), Broad Spectrum
Antimicrobials
We recommend $200 million in funding for the Project BioShield SRF.
The SRF is positioned to support the response to public health threats,
including AMR. BARDA and National Institute of Allergy and Infectious
Diseases efforts have helped companies bring new antibiotics to market,
but those companies now struggle to stay in business and two filed for
bankruptcy in 2019. In December 2019, SRF funds supported a contract
for a company following approval of its antibiotic--a phase of drug
development during which small biotech firms are particularly
vulnerable. $200 million in funding would expand this approach to
better support the antibiotics market.
national institutes of health
National Institute of Allergy and Infectious Diseases (NIAID)
$6.520 billion for NIAID, including $600 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 FY2022 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.
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. The current pandemic
has reportedly increased interest in infectious diseases as a career,
but translating increased interest into recruitment and retention
remains a challenge. Infectious diseases as a specialty only filled 88%
of positions and 75% of programs in the recent match; further, 80% of
counties in the US do not have an ID physician. Strong NIAID support
for career development through increased FY2022 funding and other
initiatives is critical to maintaining and improving 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.
The COVID-19 pandemic has exposed systemic deficits that threaten
our ability to combat future outbreaks and threats, such as AMR. FY2022
funding will allow NIAID to continue to respond to the pandemic and
prepare for future outbreaks while carrying out its broader role in
infectious diseases research. Such efforts include 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 infections; and
support for training more physician scientists and clinical
investigators to improve research capacity, for example, as outlined in
the 2020-2025 National Action Plan to Combat Antibiotic-Resistant
Bacteria.
conclusion
Thank you for the opportunity to submit this statement. The
nation's ID physicians and scientists rely on strong federal
partnerships to keep Americans healthy and urge you to support these
efforts. Please forward any questions to Lisa Cox at
[email protected].
[This statement was submitted by Barbara D. Alexander, MD, MHS,
FIDSA, IDSA, 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 addition, our testimony respectfully asks the Subcommittee to
support the inclusion of report language urging the Department of
Health and Human Services (HHS) to implement recommendations issued by
the HHS Pain Management Best Practices Inter-Agency Task Force.
The Integrative Health Policy Consortium (IHPC) 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
this additional support, NICCH 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 joins other organizations in asking the Subcommittee to
provide NIH with $46.1 billion in FY 2022. This request, which is a
$3.177 billion (7.4%) increase over the comparable FY 2021 funding
level for the NIH, would allow for the agency's base budget to keep
pace with the biomedical research and development price index (BRDPI)
and allow meaningful growth of 5%. Further, such an increase would
expand NIH's capacity to support promising science across all
disciplines, particularly including the new Whole Health initiative
underway at NCCIH. IHPC asks the subcommittee to provide NCCIH with at
least a similar 7.4% funding increase in FY 2022.
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 $2.2 billion in discretionary funding in FY 2022.
Further, we respectfully request the Subcommittee to request a report
from HRSA in FY 2022 regarding the inclusion of regulated complementary
and integrative health professionals and services system wide, Medicare
and Medicaid reimbursement for services within the FQHC system and
barriers to access and reimbursement for non-pharmacologic pain
management services; and possible solutions to the elimination of noted
barriers.
hhs pain management best practices inter-agency task force
IHPC respectfully asks that the Subcommittee support the inclusion
of proposed report language, urging HHS to facilitate adoption of
recommendations from The Pain Management Best Practices Inter-Agency
Task Force and launch a public awareness campaign to educate Americans
about the differences between acute and chronic pain and the evidence-
based non-opioid (non-pharmacologic) treatment options that are
available. In 2019, this congressionally established task force issued
a ground-breaking report regarding best practices for managing acute
and chronic pain. Of note, the report underscores the philosophical and
cultural shift to focus on addressing chronic and acute pain by using
complementary and integrative health including non-pharmacologic
approaches that have been proven effective and are widely supported by
practitioners working in all healthcare settings. These treatment
options include acupuncture, massage therapy, physical and occupational
therapies, chiropractic, cognitive behavioral therapy, manipulative
therapy, yoga, tai chi, and meditation. If implemented, these
recommendations will have profound public health and positive national
economic impact on a significant percent of the U.S. population. The
IHPC stands ready to assist the agency and the Congress in advancing
this important public awareness.
Thank you for considering our views. The IHPC looks forward to
working with you to enact the FY 2022 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.
[This statement was submitted by Margaret Erickson, PhD, RN, CNS,
APRN, APHN-BD, Co-Chair, Integrative Health Policy Consortium.]
______
Prepared Statement of International Foundation for
Gastrointestinal Disorders
fiscal year 2022 l-hhs appropriations recommendations
_______________________________________________________________________
--At least $46.1 billion in program level funding for the National
Institutes of Health (NIH).
--Proportional funding increase for the National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK).
--Please provide $10 billion for the Centers for Disease Control and
Prevention (CDC).
--Please provide $5 million for the Chronic Disease Education and
Awareness Program.
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, and distinguished members
of the Subcommittee, as you work with your colleagues to develop the
FY2022 Labor-Health and Human Services (L-HHS) appropriations bill,
please keep in mind the needs and concerns of the functional GI and
motility disorders community. Nearly two decades ago, I was diagnosed
with one of these diseases, irritable bowel syndrome (IBS). As a young
adult, I underwent extensive testing and workups over many years in a
difficult effort to discover what was causing my symptoms and how best
to treat them. I often relied on self-treatment as best as I could, but
this was not sustainable. Unfortunately, I am not alone in these
experiences. As President of IFFGD, I have heard my story echoed back
to me by thousands of others. Patients affected by these disorders
often face similar delays in diagnosis, frequent misdiagnosis, and
inappropriate treatments including unnecessary and costly surgery.
These are common concerns for our community, and they underscore the
need for increased research, improved provider education, and greater
public awareness.
about the foundation
The International Foundation for Gastrointestinal Disorders (IFFGD)
is a registered nonprofit education and research organization dedicated
to informing, assisting, and supporting people affected by
gastrointestinal (GI) disorders. IFFGD works with patients, families,
physicians, nurses, practitioners, investigators, regulators,
employers, and others to broaden understanding about GI disorders,
support and encourage research, and improve digestive health in adults
and children.
about gastrointestinal (gi) and motility disorders
GI and motility disorders are the most common digestive disorders
in the general population. These disorders are classified by symptoms
related to any combination of the following: motility disturbance,
visceral hypersensitivity, altered mucosal and immune function, altered
gut microbiota, and altered central nervous system (CNS) processing.
Some examples of functional GI disorders are: dyspepsia, gastroparesis,
irritable bowel syndrome (IBS), gastroesophageal reflux disease (GERD),
bowel incontinence, and cyclic vomiting syndrome. The costs associated
with these diseases range from $25-$30 billion annually; economic costs
are also reflected in work absenteeism and lost productivity.
centers for disease control and prevention
We greatly appreciate the support from the Subcommittee in creating
the Chronic Disease Education and Awareness Program in FY2021. Patients
with FGIMDs frequently suffer for years before receiving an accurate
diagnosis, exposing them to unnecessary and costly tests and procedures
including surgeries, as well as needless suffering and expense.
Functional GI and motility disorders are among the most common
digestive disorders in the general population. They affect an estimated
1 in 4 people in the U.S. and account for 40% of GI problems seen by
medical providers. A CDC program focused on surveillance, provider
education, and public awareness would increase diagnoses and improve
patient outcomes. We ask that the Subcommittee provide $5 million for
the Chronic Disease Education and Awareness Program in FY2022.
national institutes of health
Strengthening the nation's biomedical research enterprise through
NIH fosters economic growth and sustains innovations that enhance the
health and well-being of the American people. Functional GI disorders
are prevalent in about 1 in 4 people in the U.S., accounting for 40% of
GI problems seen by medical providers. NIDDK supports basic, clinical,
and translational research on aspects of gut physiology regulating
motility and supports clinical trials through the Motility and
Functional GI Disorders Program.
Several of NIH's crosscutting initiatives are currently advancing
science in meaningful ways for patients with gastrointestinal
disorders. The Stimulating Peripheral Activity to Relieve Conditions
(SPARC) Initiative supports research on the role that nerves play in
regulating organ function. Methods and medical devices that modulate
these nerve signals are a potentially powerful way to treat many
chronic conditions, including gastrointestinal and inflammatory
disorders. The Human Microbiome Project is also unlocking important
discoveries that will help to inform and advance emerging treatment
options for many in the community.
patient perspective--jacqui's story
I got sick after an emergency appendectomy on Thanksgiving 2010
while I was in Army basic training. I was able to fight off the
inevitable and did four years in the Army during which I did a tour in
Afghanistan. When I got back, my health really started declining.
I fought and fought and fought for an answer, but it took just over
seven years to be diagnosed with gastroparesis. My main symptoms were
nausea, vomiting and pain. It got so bad that I had to give up my dream
career and was medically retired from the service.
Because we had tried pretty much every conservative treatment, they
told me I would just have to live with it. It got to the point where I
was going weeks without eating and was in and out of the ER getting
fluids, because anything that went in my stomach came back up. My hair
thinned, so I shaved it, and I was having memory problems and
confusion, which got so bad that my neuropsych tests came back with my
score being in the range of dementia.
My gastroenterologist even told me at one point that she couldn't
do anything ``drastic'' to help me until my blood work was ``bad
enough.''
Thank you for the opportunity to submit our community's
perspective, as you consider appropriations priorities for FY 2022. We
look forward to continuing to work with you on these critical issues.
[This statement was submitted by Ceciel T. Rooker, President and
Executive
Director, International Foundation for Gastrointestinal Disorders.]
______
Prepared Statement of the Interstate Mining Compact Commission
We are writing in regard to the fiscal year 2022 Budget for the
Mine Safety and Health Administration (MSHA), U.S. Department of Labor.
In particular, we urge the Subcommittee to support a full appropriation
for state assistance grants for safety and health training of our
Nation's miners pursuant to section 503(a) of the Mine Safety and
Health Act of 1977 (the Act). MSHA's budget for at least the last five
fiscal years has included an amount of not less than $10,537,000 for
state assistance grants. We are pleased to see that President Biden's
fiscal year 2022 budget proposes to continue funding at this level. We
urge the Subcommittee to fund these grants at this statutorily
authorized level for state assistance grants so that states are able to
meet the training needs of miners and to fully and effectively carry
out important state responsibilities under section 503(a) of the Act.
We believe the states can more than justify the need for funding at the
statutorily authorized level.
The Interstate Mining Compact Commission is a multi-state
governmental organization that represents the natural resource,
environmental protection and mine safety and health interests of its 26
member states. The states are represented by their Governors who serve
as Commissioners.
We support full funding $10,537,000 for the state assistance grants
that enable the states to provide essential safety and health training
for the nation's coal miners, undiminished by use of these funds for
other purposes. Section 503 of the Act was structured to be broad in
scope and to stand as a separate and distinct part of the overall mine
safety and health program. In the Conference Report that accompanied
passage of the Federal Coal Mining Health and Safety Act of 1969, the
conference committee noted that both the House and Senate bills
provided for ``Federal assistance to coal-producing States in
developing and enforcing effective health and safety laws and
regulations applicable to mines in the States and to promote Federal-
State coordination and cooperation in improving health and safety
conditions in the Nation's coal mines.'' (H. Conf. Report 91-761). The
1977 Amendments to the Mine Safety and Health Act expanded these
assistance grants to both coal and metal/non-metal mines and increased
the authorization for annual appropriations to $10 million. The
training of miners was only one part of the obligation envisioned by
Congress.
With respect to the training component of our mine safety and
health programs, IMCC's member states are concerned that without full,
stable funding of the State Grants Program, the federally required
training for miners employed throughout the U.S. will suffer. Our
experience over the past 40 years has demonstrated that the states are
often in the best position to design and offer mine safety and health
training in a way that insures that the goals and objectives of
Sections 502 and 503 of the Mine Safety and Health Act are adequately
met. We greatly appreciate Congress' recognition of this fact and this
Subcommittee's strong support for state assistance grants, especially
in past years when the Administration sought to eliminate or
substantially reduce those moneys.
We also appreciate the recognition by Congress that the
availability of these funds to states should not be diminished by
allowing them to be used for other purposes. We urge Congress to reject
any attempt to diminish the funds available to states in the budget it
adopts for fiscal year 2022 and future years. The budget that is
adopted should include the full amount of $10,537,000 for state
assistance grants, without any provisos or other qualifications that
could reduce the amount of money states receive.
Thank you for the opportunity to present our views on the proposed
fiscal year 2022 budget for MSHA.
[This statement was submitted by Thomas L. Clarke, Executive
Director,
Interstate Mining Compact Commission.]
______
Prepared Statement of the Interstitial Cystitis Association
summary of recommendations for fiscal year 2022
_______________________________________________________________________
--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 $46.1 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 2022 (FY2022) 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 FY2022.
The IC Education and Awareness program has utilized opportunities
with charitable organizations to leverage funds and maximize public
outreach. Such outreach includes public service announcements in major
markets and the internet, as well as a billboard campaign along major
highways across the country. The IC program has also made information
on IC available to patients and the public though videos, booklets,
publications, presentations, educational kits, websites, self-
management tools, webinars, blogs, and social media communities such as
Facebook, YouTube, and Twitter. For healthcare providers, this program
has included the development of a continuing medical education module,
targeted mailings, and exhibits at national medical conferences.
The CDC IC Education and Awareness Program also provided patient
support that empowers patients to self-advocate for their care. Many
physicians are hesitant to treat IC patients because of the time it
takes to treat the condition and the lack of answers available.
Further, IC patients may try numerous potential therapies, including
alternative and complementary medicine, before finding an approach that
works for them. For this reason, it is especially critical for the IC
program to provide patients with information about what they can do to
manage this painful condition and lead a normal life. With the recent
developments in our conversations with the CDC we are confident that we
will continue to provide key education and awareness that will continue
to benefit the IC community.
ic research through the national institutes of health
ICA recommends a funding level of $46.1 billion for NIH in FY2022.
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 Learning and Education Academic Research
Network
The Learning and Education Academic Research Network (LEARN), a
coalition of 38 of the nation's leading research colleges of education
across the country, advocates for the importance of research on
learning and development. 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. With the staggering learning loss being experienced by
students due to the COVID-19 pandemic, it is critical that Congress
provides education research with the resources to guarantee that
educational interventions are innovative, evidence-based and effective.
LEARN urges the Subcommittee to meet the President's fiscal year (FY)
2022 budget request of 737.5 million for the Institute of Education
Sciences (IES) overall with $267.9 million dedicated to Research,
Development and Dissemination (RD&D). LEARN also requests that the
Subcommittee provide $70 million for the National Center for Special
Education Research (NCSER). In addition to requesting that the
Subcommittee meet the President's FY2022 budget request of $1.94
billion for National Institute of Child Health and Human Development
(NICHD), LEARN requests that the Subcommittee provide $2.21 billion for
National Institute of Mental Health (NIMH) in FY2022.
While advocating for these increased resources for FY2022, we want
to express our appreciation for the increases for IES that were made in
FY2021. We would also like to thank Congress for the inclusion of $100
million for IES in the American Rescue Plan Act; this investment marks
Congress' awareness of the importance of education research in
addressing the nation's most difficult educational challenges. An
increased investment in IES for FY2022 would allow for a more robust
development, and dissemination of valuable education research to
innovatively address the vast array of educational challenges posed
before, during and after the COVID-19 pandemic.
institute of education sciences
The work of IES and its grantees can guide the nation's learning
recovery so that we can exit the pandemic with a stronger, more
equitable, educational system than we entered with. 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 scientifically valid research. Unfortunately, IES is only
able to fund one out of every 10 applications it receives due to the
limitations in its budget, despite a far greater percentage of such
applications being rated excellent and worth of funding.
Without a critical examination of what works and what does not work
to further knowledge, our education systems would be left to the same
curriculum, instructional techniques and assessments, regardless of
whether they spur student success. Examples of critical education
research funded by IES include the development and adoption of a
statewide approach to math instruction in one State that is now
utilized in other States; the development and implementations of a
reading curriculum now being adopted as a statewide literacy approach
by a State legislature and improved instructional and behavioral
practices for children with disabilities. Without continued support for
general education research infrastructure, notable programs like these
would not exist to address some of the nation's longest standing
educational challenges and support the nation's most at-risk students.
The physical closure of schools and transition to virtual learning
due to the COVID-19 pandemic has greatly disrupted education research
at a time when it is more critical than ever before. Although IES
grantees have adjusted their research where possible to remote and
hybrid instruction, this pivot has also resulted in unanticipated
costs, delays and cancellations; these increased costs are likely to
persist through 2022. Nevertheless, IES funded work has provided
insightful research findings and valuable tools for educators and
caregivers throughout the pandemic. This includes a longitudinal study
on the impact of COVID-19 on the educational attainment of economically
disadvantaged undergraduates and an interactive tool guide on teaching
math to young children at home. The work of IES and its grantees have
already begun guiding the nation towards a strong and successful
educational recovery.
The focus IES drives on education research is especially important
today as our schools must ensure that efforts to reduce learning loss
because of the COVID-19 pandemic are rooted in research and evidence-
based practice. Given the importance of developing reliable evidence,
LEARN is requesting that the Subcommittee meet President Biden's FY2022
request for $737.5 million for IES overall and $267.9 million for the
Research, Development, and Dissemination (RD&D) line item within IES.
These resources for the RD&D line item will build upon the critical
resources provided in the American Rescue Plan Act for IES to further
combat the negative learning outcomes resulting from the COVID-19
pandemic. The President's request for a 15 percent increase towards IES
and a 35 percent increase for the RD&D line item is further evidence of
the importance of supporting education research and evidence-based
practices in response to the challenges of the COVID-19 pandemic.
In addition, we recommend that funding for research in special
education, through the National Center for Special Education Research
(NCSER), should 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 research-based
resources that improve educational academic outcomes for children with
or at risk of disabilities. During a time when special education
students have been dramatically impacted by the change in schooling due
to COVID-19, additional funding to NCSER is necessary to support data
and evidence-based resources to guide the continued COVID-19 response
and recovery for these students. Funding of $70 million would allow for
a new competition in FY2022, allowing further resources to address
COVID-19 learning issues.
national institutes of health
There are critical education research programs within the National
Institutes of Health (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 $1.94 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 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 $2.21
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. The untraditional
school year and strains of the COVID-19 pandemic has had a largely
negative impact on the mental health of children and adolescents
nationwide, it is important that research in this field is supported to
address these challenges.
LEARN believes it is critical that evidence-based research is
implemented and applied to schools nationwide as they work to address
the myriad of educational challenges that existed prior, and were
exacerbated, by the COVID-19 pandemic. As the nation looks towards
recovery, IES and NIH must be at the forefront of any effort to ensure
that Federal resources are going towards effective programming and
interventions. The LEARN Coalition strongly believes that key
investments in education research through IES and NIH will drive
improvements in teacher and student performance in the coming years and
allow for the beginning of a successful recovery from the COVID-19
pandemic. Thank you for your commitment to sustaining and strengthening
the nation's education research infrastructure.
Respectfully submitted,
[Camilla P. Benbow, Ed.D., Co-Chair, Learning and Education
Academic Research Network]
[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, Dean of the School of Education, University of Kansas]
[Glenn E. Good, Ph.D., Co-Chair, Learning and Education Academic
Research Network, Dean of the College of Education, University of
Florida]
______
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 $46.1 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
$10 billion for FY 2022 and enable $5 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
2022 appropriations for the National Institutes of Health (NIH) and the
Centers for Disease Control and Prevention (CDC).
about le&rn
The Lymphatic Education & Research Network (LE&RN) is an
internationally recognized non-profit organization founded in 1998 to
fight lymphatic diseases and lymphedema through education, research and
advocacy. With chapters throughout the world, LE&RN seeks to accelerate
the prevention, treatment and cure of these diseases while bringing
patients and medical professionals together to address the unmet needs
surrounding lymphatic diseases, which include lymphedema and lipedema.
about lymphedema and lymphatic diseases
The lymphatic system is a circulatory system that is critical to
immune function and good health. When it is compromised and lymph flow
is restricted, the physical impact to patients can be devastating, life
altering, and can lead to shortened lifespan. Lymphedema (LE) is one
such lymphatic disease. LE is a chronic, debilitating, and incurable
swelling that can be a result of cancer treatment, inherited or genetic
causes, and damage to the lymphatic system from surgery or an accident,
or from parasites as in lymphatic filariasis. Stanford University
estimates that up to 10 million Americans have lymphedema. This
represents more Americans than those living with AIDS, Multiple
Sclerosis, Parkinson's disease, Muscular Dystrophy and ALS--combined.
The World Health Organization puts the global number of people with
this disease at 250 million. There is no cure. There is no approved
drug therapy. And there are currently only three drug studies worldwide
seeking a treatment. Psychosocially bruised by a disease that leaves us
deformed, we do our best to hide our lymphedema. 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 2022 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 a truly
treatable disease. To reach this goal will require a commitment to
important medical research. LE&RN joins the broader medical research
community in thanking Congress for continuing to provide the National
Institutes of Health with proportional and sustainable funding
increases over the past several fiscal years, and we ask you all to
continue to prioritize these activities by providing at least a $46.1
billion for NIH in FY 2022.
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.
LE&RN also joins the public health community in asking Congress to
provide the Centers for Disease Control and Prevention (CDC) with $10
billion through FY 2022 and to increase funding to increase awareness,
education, and surveillance of lymphatic diseases. We encourage the
Subcommittee to support $5 million for the Chronic Disease Education
and Awareness Program in FY2022 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 the March of Dimes
March of Dimes, the nation's leading nonprofit organization
fighting for the health of all moms and babies, appreciates this
opportunity to submit testimony for the record on fiscal year (FY) 2022
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 historic HHS
budget proposal for FY 2022 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 $1.7 billion for NICHD's groundbreaking biomedical research
activities in FY 2022. 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
(P.L. 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 29 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 no less than $30 million to fully scale
these programs in all states, an increase of $26.5 million.
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 no
less than $30 million, an increase of $15 million, 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 $28 million
for NSQAP and $28.883 million for the Heritable Disorders program for
FY22.
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 $10 million in FY 2022 to add five programs and
provide technical assistance to non-grantee states.
Maternal Mental Health Hotline: We thank the Committee for funding
$3 million in FY21 to the new maternal mental health hotline. 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 provide $5
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 2022 (FY22) 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 ongoing support for the program, particularly in
response to the COVID-19 pandemic. With Congress' help in securing
much-needed emergency relief funding for the OAA network, local senior
nutrition programs (e.g., Meals on Wheels) continue to serve on the
front lines of the ongoing public health crisis, delivering essential
nutrition assistance and so much more to older Americans. Despite the
historic emergency supplemental funding and recent investments in
annual appropriations, senior nutrition programs continue to be
challenged by a soaring need for services which not only preexisted
COVID-19 but have been rendered far worse as a result of the pandemic.
For this reason, we request a total of $1,903,506,000 for the OAA Title
III C Nutrition Program--Congregate Nutrition Services, Home-Delivered
Nutrition Services, and Nutrition Services Incentive Program (NSIP)--in
FY22. As programs will continue to serve a greater number of older
adults through the new fiscal year and costs remain high, our specific
appropriations requests are:
--$965,342,000 for Congregate Nutrition Services (Title III C-1)
--$726,342,000 for Home-Delivered Nutrition Services (Title III C-2)
--$211,822,000 for Nutrition Services Incentive Program (Title III)
While this FY22 request is double the FY21-enacted funding levels
for the program, it 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 health and economic crisis, these nutrition programs
are a lifeline for millions of older adults and the services they
provide must flex to meet the need.
Overseen by ACL's Administration on Aging and implemented at the
local level through more than 5,000 community-based providers, the OAA
Nutrition Program delivers nutritious meals, opportunities for 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 nearly fifty years. Amid the
pandemic, older adults face unprecedented demands on their physical and
mental health, independence and financial well-being. The local
providers that serve them are seeing a far greater demand for their
services as operational expenses and/or overall costs to safely deliver
meals continue to rise. Accordingly, additional federal funding and
flexibility of use of OAA nutrition resources are needed for senior
nutrition programs to adequately adapt and expand operations to meet
the growing and evolving needs of the communities they serve.
Before the coronavirus pandemic, nearly 9.7 million (13%) older
adults ages 60 and older were threatened by hunger (i.e., marginally
food insecure)--5.3 million (7%) of which were food insecure or very
low food secure.\1\ Social isolation--which has been amplified amidst
safety and social distancing measures--is yet another threat for the
nearly 17.5 million (24%) seniors that lived alone in 2019.\2\ One in
five older adults reported frequent feelings of loneliness prior to the
pandemic, and many more seniors have experienced feeling lonely or lack
of social connection since then.\3\ Most older Americans possess at
least one trait that puts them at increased risk of experiencing food
insecurity, malnutrition, social isolation and/or loneliness, thereby
increasing the likelihood of experiencing myriad adverse health
effects. Despite the wide recognition of the relationship between
healthy aging and access to nutritious food and regular socialization,
millions of seniors were struggling to meet these basic human needs
pre-COVID; and these issues have only been exacerbated as a result of
the pandemic.
---------------------------------------------------------------------------
\1\ J. Ziliak & C. Gundersen, The State of Senior Hunger in America
2018: An Annual Report, prepared for Feeding America, 2020. https://
www.feedingamerica.org/research/senior-hunger-research/senior.
\2\ U.S. Census Bureau, American Community Survey 2018, available
on the Administration for Community Living Aging, Independence, and
Disability Program Data Portal (AGID), 2020. https://agid.acl.gov/
CustomTables/.
\3\ AARP, Loneliness and Social Connections: A National Survey of
Adults 45 and Older, 2018. https://www.aarp.org/research/topics/life/
info-2018/loneliness-social-connections.htm.
---------------------------------------------------------------------------
The OAA Nutrition Program is designed to reduce hunger, food
insecurity and malnutrition, and to promote socialization and the
overall health and well-being of older adults. Providers across the
country have long played a pivotal role in supporting the independence
and quality of life of the 2.4 million older adults they serve. Meals
served by the program must also meet the dietary guidelines set by the
OAA Nutrition Program and are often tailored to meet medical needs and
cultural preferences. OAA services 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
institutionalization.\4\ For many program participants, the volunteer
or staff member who delivers meals to their homes may be the only
individual(s) she or he sees that day.
---------------------------------------------------------------------------
\4\ Administration for Community Living (ACL), State Program
Reports 2019, available on AGID, 2021. https://agid.acl.gov/
CustomTables/.
---------------------------------------------------------------------------
The profile of home-delivered meal clients reveals the high degree
of vulnerability among recipients, with the majority being age 75 or
older, female, living alone, taking multiple prescription medications
daily and/or having three or more chronic conditions. A significant
number of those served belong to a racial and/or ethnic minority group,
as 19% of participants are Black or African American, 7% are Hispanic
or Latino, and 5% are Native American or Hawaiian or Pacific Islander.
Additionally, among participants:
--35% live at or below the poverty level;
--25% live in rural areas;
--15% are veterans.\5\
---------------------------------------------------------------------------
\5\ Mabli et al. Evaluation of the Effect of the Older Americans
Act Title III-C Nutrition Services Program on Participants' Food
Security, Socialization, and Diet Quality, Mathematica Policy Research,
report prepared for ACL, 2017. https://acl.gov/sites/default/files/
programs/2017-07/AoA_outcomesevaluation_final.pdf.
---------------------------------------------------------------------------
A third (33%) of home-delivered meal recipients report not having
enough money to purchase food.\6\ Fortunately, the vital services
financed by the OAA Nutrition Program enable seniors with these risk
factors to remain safer, healthier and less isolated in their own homes
and communities.
---------------------------------------------------------------------------
\6\ ACL. National Older Americans Act Participants Survey (NPS),
2018, available on AGID Custom Tables and NPS Data Files, 2020. https:/
/agid.acl.gov/.
---------------------------------------------------------------------------
The results of a 2015 study commissioned by Meals on Wheels America
found that seniors who received daily home-delivered meals were more
likely to report improvements in mental health, self-rated health and
feelings of isolation and loneliness, as well as reduced rates of falls
and decreased concerns about their ability to remain in their home.\7\
Additional research has found home-delivered meal program participants
experience less healthcare utilization and lower expenditures than the
non-participant controls, suggesting the program's potential to reduce
costs among patients with high-cost or complex healthcare needs.\8\
---------------------------------------------------------------------------
\7\ Meals on Wheels America. More Than a Meal Pilot Research Study,
report prepared by K. S. Thomas & D. Dosa, 2015, https://
www.mealsonwheelsamerica.org/learn-more/research/more-than-a-meal/
pilot-research-study.
\8\ Berkowitz et al. Meal Delivery Programs Reduce the Use of
Costly Health Care in Dually Eligible Medicare and Medicaid
Beneficiaries. Health Affairs (Vol. 37, No. 4), 2018. https://doi.org/
10.1377/hlthaff.2017.0999.
---------------------------------------------------------------------------
Additionally, the OAA Nutrition Program is a true public-private
partnership that provides critical support and resources to local
community-based organizations. By serving seniors in their homes and
communities, local programs generate a powerful social and economic
return on investment for older adults and taxpayers alike. They
leverage funds granted to states through the OAA to offer nutrition and
social services with the help of millions of volunteers, who provide
innumerous in-kind contributions to support daily operations. In the
aggregate, funding from the OAA accounted for 40% of the total amount
spent to provide over 223 million congregate and home-delivered meals
in 2019, based on the latest available data.\9\ As public spending on
healthcare rises each year--largely attributable to a rapidly growing
senior population with complex health needs and disproportionate risk
to severe illness and complications due to COVID-19--it is imperative
that we invest in these cost-effective programs that safely promote
health and independence and reduce costly healthcare utilization among
many of our country's most at-risk seniors. To further underscore,
Meals on Wheels can serve a senior for an entire year for approximately
the equivalent cost of one day in the hospital or 10 days in a nursing
home.
---------------------------------------------------------------------------
\9\ See note 4 above.
---------------------------------------------------------------------------
Prior to the pandemic, federal funding for the senior nutrition
network was not keeping pace with increasing demand, rising costs and
inflation, leaving a huge gap between seniors served and those in need
of services but not receiving them. Nationally, the OAA Nutrition
Program network served 17+ million fewer meals in 2019 than in 2005--a
7% decline--despite the population of adults 60 and older growing 53%
over that same period.\10\ Further illustrating the need for more
funding, a 2015 Government Accountability Office study estimated that
83% of low-income, food insecure seniors do not receive the congregate
or home-delivered meals that they likely needed.\11\ Among Meals on
Wheels America members surveyed in 2019, nearly half of all local
programs reported maintaining an active waiting list due to
insufficient resources, and 85% of programs surveyed saw unmet need for
services in their communities at that time.\12\ The emergency funding
provided through COVID-19 relief legislation not only enabled programs
to provide services for those individuals in their communities who have
long been eligible and underserved but also helped address a huge
influx of older adults newly in need of nutrition services because of
the pandemic. An increase in FY22 appropriations is needed to ensure
that these individuals can continue to receive the nutritional and
social support unique to the OAA Nutrition Program that helps them
remain healthier and independent at home and out of far more costly
institutional or healthcare settings.
---------------------------------------------------------------------------
\10\ ACL. State Program Reports 2005-2019, available on AGID, 2021.
https://agid.acl.gov/CustomTables/.
\11\ U.S. Government Accountability Office (GAO). Older Americans
Act: Updated Information on Unmet Need for Services, 2015. https://
www.gao.gov/products/GAO-15-601R.
\12\ Meals on Wheels America. More Than a Meal Comprehensive
Network Study, research conducted by Trailblazer Research, 2019.
www.mealsonwheelsamerica.org/learn-more/research/more-than-a-meal/
comprehensive-network-study.
---------------------------------------------------------------------------
With the onset of the pandemic in March 2020, as mentioned above,
the Meals on Wheels network faced an unprecedented surge in demand as
the number of older adults sheltering in place increased and congregate
centers shifted ways of operating--including transitioning congregate
services to fully home-delivered or to grab-and-go and curbside pick-up
alternatives, as well as offering virtual socialization activities and
wellness checks over the phone. Most Meals on Wheels programs overcame
significant challenges to continue and then rapidly scale their
operations to serve more older Americans in need. In a survey conducted
in November 2020 on behalf of Meals on Wheels America, programs
reported delivering an average of 100% more home-delivered meals at
their pandemic peak than they served before.\13\ At that time, programs
also reported serving home-delivered meals to 84% more clients on a
weekly basis, and four out of five local programs agreed that these
``new clients are here to stay.''
---------------------------------------------------------------------------
\13\ Meals on Wheels America. COVID-19 Impact Survey, research
conducted by Trailblazer Research, November 2020.
---------------------------------------------------------------------------
Despite the incredible response from the senior nutrition network
to quickly scale services, barriers remain in addressing the full
demand. According to the November 2020 survey, 88% of Meals on Wheels
programs reported increased costs due to the necessary purchase of
personal protective equipment (PPE) and safety supplies, meal
production expenses and/or labor needs. Local programs reported that
costs are expected to remain high, and nine in 10 Meals on Wheels
programs reported unmet need for home-delivered meals in their
community. Nearly a third of programs said they would need to, at
minimum, double their home-delivered efforts to fill the gap in their
community, as many reported increased numbers of seniors forced to go
on waiting lists. More than 15 months into this public health crisis,
local programs are continuing to deliver these life-saving services at
high rates and have cited funding as the primary factor impacting their
ability to serve individuals most directly affected by the pandemic.
Without additional funding through the OAA, many nutrition providers
will not be able to support their current client base, much less expand
to reach more seniors who need services but are not receiving them.
We understand the difficult decisions you face with respect to
annual appropriations bills and other budgetary challenges as Congress
works to mitigate the impacts of the global pandemic and recover from
this prolonged national emergency. However, to address the current
level of nutrition services needed in communities, increased federal
funding through the regular appropriations cycle is critically needed
for the next fiscal year and beyond. With approximately 12,000
individuals turning 60 every day, the requested appropriations increase
will help provide the levels needed for community-based nutrition
programs to reach eligible older adults, especially as the demand for
these essential services continues to rise.
As the Subcommittee develops its FY22 Labor-HHS-Education
appropriation bill, we request you provide a minimum of $1,903,506,000
for the OAA Nutrition Program so that local community-based Meals on
Wheels programs can ensure the health, safety and social connectedness
of our nation's seniors, build the capacity of OAA 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
senior in America is left hungry and isolated.
[This statement was submitted by Ellie Hollander, President and
CEO, Meals on Wheels America.]
______
Prepared Statement of the Medical Library Association and Association
of Academic Health Sciences Libraries
I, Mary M. Langman, Director, Information Issues and Policy,
Medical Library Association (MLA), submit this statement on behalf of
MLA and the Association of Academic Health Sciences Libraries (AAHSL).
MLA is a global, nonprofit, educational organization with a membership
of more than 400 institutions and 3,000 professionals in the health
information field. AAHSL supports academic health sciences libraries
and directors in advancing the patient care, research, education and
community service missions of academic health centers through visionary
executive leadership and expertise in health information, scholarly
communication, and knowledge management.
We thank the Subcommittee for the opportunity to submit testimony
supporting appropriations for the National Library of Medicine (NLM),
an agency of the National Institutes of Health (NIH), and recommend
$475 million for NLM in FY22, a 3% (+$12.9 million) increase. Working
in partnership with the NIH and other Federal agencies, NLM is the key
link in the chain that translates biomedical research into practice,
making the data and other results of research readily available to all
who need it. As NLM works to achieve key objectives of its Strategic
Plan--to accelerate data powered discovery and health, reach new users
in new ways, and prepare a workforce for a future of data-driven
research and health, it also supports NIH-wide efforts to answer the
call to respond to national priorities, close the gap in health
disparities, and capitalize on fundamental investments. NLM
accomplishes this through effective preservation of valued scientific
and data resources, judicious investments in extramural and intramural
research, informed stewardship of Federal resources, and innovative
partnerships to align priorities and leverage investments across HHS,
the Federal government, and the biomedical research community.
As health sciences librarians who use NLM's programs and services
every day, we can attest that NLM resources literally save lives.
Therefore, investing in NLM is an investment in good health.
Leveraging NIH Investments in Biomedical Research
NLM's budget supports information services, research, and programs
that sustain the nation's biomedical research enterprise. In FY22 and
beyond, NLM's budget must continue to be augmented to support
modernization and expansion of its information resources, services,
research, and programs which collect, organize, and develop new ways to
make readily accessible rapidly expanding biomedical knowledge
resources and data. NLM maximizes the return on investment in research
conducted by the NIH and other organizations. It makes the results of
biomedical information accessible to researchers, clinicians, business
innovators, students, and the public, enabling such data and
information to be used more efficiently and effectively to drive
innovation and improve health. Rapid growth of data also necessitates
funding that will ensure long-term sustainability of these valuable
information resources. NLM is unique because it stimulates and supports
innovative research in data science and information management that
transcends specific disease areas and data types.
NLM plays a critical role in NIH's data science and open science
initiatives leading the development, maintenance and dissemination of
key standards for health data interchange that are now required of
certified electronic health records (EHRs). NLM builds, sustains, and
augments a suite of almost 300 databases which provide information
access to health professionals, researchers, educators, and the public.
It supports the acquisition, organization, preservation, and
dissemination of the world's biomedical literature. In FY 2019, NLM
made genomic sequence data available in the cloud. NLM's Sequence Read
Archive (SRA) is the world's largest publicly available repository of
next-generation genome sequence data, with more than 9 million records
comprising 25 petabytes of data. To improve access and utility of SRA
data, NLM uploaded the public access SRA data to two commercial clouds
that have agreements with NIH's Science and Technology Research
Infrastructure for Discovery, Experimentation, and Sustainability
(STRIDES) Initiative. This transition significantly expands the
discovery potential of the data. Freed from the limitations of local
storage and computational resources, users are empowered to compute
across the full corpus of SRA data without having to download and store
large volumes of data. Moving to cloud platforms also makes it possible
to develop customized tools and methods for asking research questions
of the data.
Growing Demand for NLM's Information Services
Each day, more than 6 million people use NLM websites and download
115 terabytes of data. Thousands of researchers and businesses upload a
total of 15 terabytes of data daily. Annually, NLM information systems
process more than six billion human requests and eight billion
computer-to-computer interactions. NLM's information services help
researchers advance scientific discovery and accelerate its translation
into new therapies; provide health practitioners with information that
improves medical care and lowers its costs; and give the public access
to resources and tools that promote wellness and disease prevention.
Every day, medical librarians across the nation use NLM's services to
assist clinicians, students, researchers, and the public in accessing
information to save lives and improve health. Without NLM, our nation's
medical libraries would be unable to provide quality information
services that our nation's health professionals, educators, researchers
and patients increasingly need.
NLM's data repositories and online integrated services such as
GenBank, dbGaP, Genetics Home Reference (GHR), PubMed, and PubMed
Central (PMC) are revolutionizing medicine. GenBank is the definitive
source of gene sequence information. Each month, 2.1 million users
accessed consumer-level information about genetics from GHR, which
contains more than 2,700 summaries of genetic conditions, genes, gene
families, and chromosomes. PubMed, with more than 32 million references
to the biomedical literature, is the world's most heavily used source
of bibliographic information with almost 3.3 million users each day.
NLM also launched a new PubMed platform for an improved user
experience, including a new search algorithm with relevance rankings
and better tools for citations. PubMed Central is NLM's digital archive
which provides public access to the full-text versions of more than 6.8
million biomedical journal articles, including those produced by NIH-
funded researchers. On a typical weekday more than 3.5 million users
download articles from PubMed Central.
NLM continually expands biomedical information services to
accommodate a growing volume of relevant data and information and
enhances these services to support research and discovery. NLM ensures
the availability of this information for future generations, making
books, journals, technical reports, manuscripts, microfilms,
photographs and images accessible to all Americans, irrespective of
geography or ability to pay, and guaranteeing that citizens can make
the best, most informed decisions about their healthcare.
Disseminating Clinical Trial Information
ClinicalTrials.gov, the world's largest clinical trials registry,
now includes more than 370,000 registered studies and summary results
in all 50 states and in 219 countries for more than 48,000 trials. More
than 158,000 users access this vital information each day. As health
sciences librarians who fulfill requests for information from
clinicians, scientists, and patients, we applaud NIH and NLM for
implementing requirements for clinical trials registration and results
submission consistent with the FDA Amendments Act of 2007, and for
applying them to all NIH-supported clinical trials. These efforts
increase transparency of clinical trial results and provide patients
and clinicians with information to guide health care decisions. They
also ensure biomedical researchers have access to results that can
inform future protocols and discoveries.
Partnerships Ensuring Outreach and Engagement in Communities Across the
Nation
NLM's outreach programs are essential to the MLA and AAHSL
membership and to the profession. The NLM coordinates an 8,000-member
Network of the National Library of Medicine (NNLM), including 7
Regional Medical Libraries that receive NLM support, 125 resource
libraries connected to medical schools, and more than 5,000 libraries
located primarily in hospitals and clinics. Through the NNLM, NLM
educates medical librarians, health professionals, and the general
public about its services and provides training in their effective use.
The NNLM serves the public by promoting educational outreach for public
libraries, secondary schools, senior centers and other consumer
settings, and its outreach to underserved populations helps reduce
health disparities.
Since May 2018, the NNLM has partnered with the NIH All of Us
Research Program to support community engagement efforts by United
States public libraries and to raise awareness about the program.
Together, NLM and NIH have built the NNLM All of Us Community
Engagement Network (CEN). The CEN focuses on NNLM's mission to improve
the public's access to health information and provide awareness of All
of Us to communities that are Underrepresented in Biomedical Research
by partnering with libraries across the United States. The CEN is
designed to leverage the mission of the NNLM to help libraries in
supporting the health information needs of their users.
NLM's MedlinePlus provides consumers with trusted, reliable health
information on 1,000 topics in English and Spanish. It attracts more
than 1 million visitors daily. NLM continues to enhance MedlinePlus and
disseminate authoritative information via the website, a web service,
and social media. MedlinePlus and MedlinePlus en Espanol have been
optimized for easier use on mobile phones and tablets. NIH MedlinePlus
Magazine and NIH MedlinePlus Salud are available in doctors' offices
nationwide, and NLM's MedlinePlus Connect enables clinical care
organizations to link from their EHR systems to relevant patient
education materials.
Strengthening Data Science and Open Science Capacity
NLM is a leader in data science and open science, including the
acquisition and analysis of data for discovery and the training of
biomedical data scientists. The library aims to strengthen its position
as a center of excellence for health data analytics and discovery, and
to spearhead the application of advanced data science tools to
biological, clinical and health data. NLM is building a workforce for
data-driven research and health by funding PhD-level research training
in biomedical informatics and data science. The library also partners
with NIH to ensure inclusion of data science and open science core
skills in all NIH training programs, and is expanding training for
librarians, information science professionals, and other research
facilitators. NLM is participating in NIH-wide efforts to foster a
culture that advances science and ensures the development and retention
of a diverse, safe, and respectful workforce for data-driven research
and health well into the future.
Responding to the Novel Coronavirus (COVID-19)
The health sciences library community thanks Congress for providing
NLM with the $10 million supplemental appropriations to prevent,
prepare for, and respond to the Coronavirus. From the beginning, NLM
has been at the forefront of providing people with information on
COVID-19 . Our frontline health care providers use NLM's databases to
access the latest research datasets, literature publications, and
scientific information about Covid-19. NLM has responded to COVID-19's
rapidly evolving situation through its suite of tools and deep well of
expertise in managing large and complex datasets and making them
accessible to the public. Our frontline healthcare providers use NLM's
databases to access the latest research datasets, literature
publications, and scientific information about COVID-19. For example,
NLM has been:
--Making immediately available to the public in PubMed Central tens
of thousands of coronavirus-related research publication and
data contributed by major publishers
--Contributing to the COVID-19 Open Research Dataset (CORD-19), which
represents the most extensive machine-readable coronavirus
literature collection available for text mining to date, with
more than 30,000 full-text scholarly articles from PMC as of
mid-May 2020. The Text REtrieval Conference (TREC)-COVID
Challenge makes use of the CORD-19 dataset to help search
engine developers evaluate and optimize their systems in
meeting the needs of the research and healthcare communities.
--Creating BI SARS-CoV-2 Resources, a portal of literature, gene
sequence data, and clinical resources related to the virus that
causes COVID-19.
--Providing the biomedical community free and easy access to genome
sequences from the coronavirus through the GenBank sequence
database.
--Providing information about US clinical trials related to COVID-19
via ClinicalTrials.gov, which is also now making available
information about trials listed in the World Health
Organization's international clinical trial registry.
--Extending standard terminologies to include terms related to COVID-
19, including codes for laboratory tests, chemical entities,
and indexing terms.
--Applying machine learning techniques to research conducted at NLM
to assist in identifying COVID-19 in X-rays and to identify and
categorize relevant published literature.
Supporting Biomedical Informatics Research and Health Information
Technology Innovation
NLM conducts and supports informatics research, training and the
application of advanced computing and informatics to biomedical
research and healthcare delivery. NLM's National Center for
Biotechnology Information (NCBI) focuses on genomics and biological
data banks, and the Lister Hill National Center for Biomedical
Communications (LHC), is a leader in clinical information analytics and
standards. Many of today's biomedical informatics leaders are graduates
of NLM-funded informatics research programs at universities nationwide.
A number of the country's exemplary electronic and personal health
record systems benefit from findings developed with NLM grant support.
A leader in supporting the development, maintenance, and free,
nationwide dissemination of standard clinical terminologies, NLM
partners with the Office of the National Coordinator for Health
Information Technology to support the interoperability of EHRs. NLM
also develops tools to make it easier for EHR developers and users to
implement accepted health data standards and link to relevant patient
education materials. In FY 2019, NLM played a critical role in the
development, usage, and utility of a data exchange standard to improve
flow and availability of data, the Health Level Seven International
(HL7) Fast Healthcare Interoperability Resources (FHIR(r)). NIH is
encouraging funded investigators to use the FHIR standard to capture,
integrate, and exchange clinical data for research purposes and to
enhance capabilities to share research data. NIH has also announced to
the small business communities its special interest in supporting
applications that use FHIR in the development of health IT products and
services. To support these efforts, NLM is managing the development and
testing of FHIR tools that researchers can use to increase the
availability of high-quality, standardized research datasets and
phenotypic information for genomic research and genomic medicine.
Closing the Gap in Health Disparities
The National Library of Medicine supports NIH's efforts to close
the gap in health disparities and improve the diversity of the
biomedical information science workforce. Their work supports our
mission and core values to make MLA and AAHSL more diverse and
inclusive organizations. NLM accomplishes this by:
--Providing open access to scientific literature through PubMed and
PubMed Central make scientific literature accessible, lading to
biological discoveries and providing the foundation to
developing clinical guidelines that inform health care.
Resources include PubMed Special Query for Health Disparities
and Minority Health Information Resources.
--Utilizing the Network of the National Library of Medicine to
provide equal access to biomedical information and improves the
public's access to information. NNLM supports events including
the recent DEI webinar series ``Nine Conversations that Matter
to Health Sciences Librarians'' as well as NNLM Reading Clubs
on Disability Health, LGBTQ Health, Racism and Health and
Diversity in Medicine.
--Funding grant programs that support research to advance health
equity and grants to reduce health disparities research
supplements to promote diversity in health research and
leveraging health information technology to address minority
health and health disparities.
--Raising awareness and sparking conversations about the intersection
of society and ethical considerations in biomedical research
and technology through the annual NLM Science, Technology, and
Society lecture series.
We look forward to continuing this dialogue and thank you for your
efforts to support funding of at least $475 million for NLM in FY22,
with additional increases in future years.
______
Prepared Statement of the METAvivor Research and Support, Inc.
fiscal year 2021 appropriations recommendations
_______________________________________________________________________
--Please provide the National Institutes of Health (NIH) with an
increase of at least a $3.2 billion for FY 2022 to bring total
agency funding up to a minimum of $46.1 billion annually.
--Please support establishment and adequate funding for the new
Advanced Research Projects Agency for Health (ARPA-H) at
NIH as proposed in the Administration's Budget Request to
Congress to facilitate robust scientific progress on
cancers.
--Please continue to support additional investment for the cancer
``moonshot'' as outlined by the 21st Century Cures Act and
otherwise ensure the National Cancer Institute (NCI) has
adequate resources.
--Please continue to emphasize the importance of federal research
activities focused on controlling and eliminating cancer that
has already disseminated (Metastatic Cancer) through committee
recommendations and timely oversight of ongoing activities.
--Please support emerging efforts to modernize the Surveillance,
Epidemiology, and End Results Research Program (SEER) Registry
to better capture the experience of metastatic cancer patients
(as outlined by recommendations within the FY 2021 Senate LHHS
Appropriations Bill).
_______________________________________________________________________
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 2022 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 the commitment to supporting innovative
medical research and providing adequate resources to public health
programs moving forward, for FY 2022.
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.
Sarah, Oregon
My name is Sarah Wald. I live in Eugene, Oregon. I am a professor
at the University of Oregon and a parent. I'm also living with
metastatic breast cancer. I was diagnosed with metastatic breast cancer
just over two years ago. It was a denovo diagnosis. This means I was
Stage IV at diagnosis. It was not a recurrence. I have no family
history of breast cancer. I saw my doctor annually for breast exams and
planned to start mammograms at forty. I had no symptoms at diagnosis. I
felt healthy. I biked 50 miles the weekend after I found what felt like
an immobile small grape in my breast. I called my doctor the morning
after I found the lump and took the first available appointment. She
got me in for a mammogram and ultrasound the day I saw her. It was
already too late. There were breast cancer cells in my bones.
I don't know how to explain to you what it is like to find out you
are dying of a terminal disease in your thirties. I don't know how to
explain to you what is like to feel healthy and be looking forward to
the future with your family and then to be told that you will almost
certainly be dead in the next few years. There is nothing I want more
than to live. I want every day of life that I can have. I want every
extra week I can spend with my family. I want to see the flowers come
in and bloom every spring. We need money for research. I was shocked to
find out how little money actually goes to metastatic breast cancer
research when it is metastatic breast cancer that kills. For those of
us living with the disease, it is a race against time to find new
treatments that will give us those extra months and those extra days.
New research and new treatments make a difference. For the past two
years, my cancer has been controlled by a treatment that first received
FDA approval in 2015. My second line of treatment will contain a drug
that received FDA approval after my diagnosis in 2019. The research you
fund today might be the research that lets me see another birthday,
mine or my child's. We need to find out how to stop breast cancer from
metastasizing and treat it when it does. I don't want anyone else to go
through what I am enduring. Please support funding more research for
stage IV metastatic breast cancer.
[This statement was submitted by Jamil Rivers, Board Chair,
METAvivor
Research and Support, Inc.]
______
Prepared Statement of the 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.
It is now estimated that the COVID-19 pandemic will cost the U.S.
economy more than $16 trillion.\1\ The NIH's fiscal year (FY) 2021
budget was just 0.25 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 $100 billion for NIH in FY 2022.
---------------------------------------------------------------------------
\1\ https://news.harvard.edu/gazette/story/2020/11/what-might-
covid-cost-the-u-s-experts-eye-16-trillion/.
---------------------------------------------------------------------------
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.
The Michelson Center for Public Policy 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 Rosa DeLauro and Ranking Member Tom
Cole, have shown in providing the NIH with six consecutive funding
increases 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 $51
billion in 2022, which is a good start, but not nearly enough. This is
precisely the right time to be bold and go bigger. For the NIH to
invest adequately in risky research with the most promise for
transformative advances--the very type of research that enabled the
unprecedented COVID-19 vaccine development we saw over the past year-it
needs twice that.
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 the NIH's budget, 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.
Investing in the NIH is an investment in our national security. The
investments that protect our nation's health and wellbeing should be
protected in the same manner as investments in our national defense.
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 2020, NIH
invested $34.65 billion, or almost 80 percent of its budget, in the
biomedical research industry across the country. This investment
supported more than 536,338 jobs nationwide and generated nearly $91.35
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 US economy--a 178-fold return on
investment--and has paid for itself many times over in industry tax
revenues returned to the government.\3\
---------------------------------------------------------------------------
\2\ NIH's funding information and economic impact data comes from
United for Medical Research's 2021 State-By-State Update, https://
www.unitedformedicalresearch.org/wp-content/uploads/2021/03/NIHs-Role-
in-Sustaining-the-U.S.-Economy-FINAL-3.23.21.pdf.
\3\ https://www.nih.gov/about-nih/what-we-do/impact-nih-research/
our-society.
---------------------------------------------------------------------------
MCPP is enthusiastic about the Biden Administration's proposal to
establish a new Advanced Research Projects Agency for Health (ARPA-H).
As proposed, ARPA-H could 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.
MCPP is committed to supporting innovative ideas that can accelerate
the pathway to cures. Standing up an entity like ARPA-H that is focused
on high-risk high-reward research and accelerating the timeline from
idea to clinical application is the exact thing our nation needs to
leverage the lessons learned from the COVID-19 pandemic and apply them
to other pressing public health challenges.
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 2020,
only one out of every five applicants was ultimately awarded NIH
funding, 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.\4\ 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 ten percent of the agency's
overall budget invested in the most promising young investigators
conducting highly innovative research with truly transformative
potential.
---------------------------------------------------------------------------
\4\ https://nexus.od.nih.gov/all/2018/05/04/the-issue-that-keeps-
us-awake-at-night/.
---------------------------------------------------------------------------
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 at least $100 billion in FY 2022. 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 Midwest Urban Strategies
Dear Chairman Murray and Ranking Member Blunt:
Midwest Urban Strategies (MUS) represents a coordinated effort on
behalf of 13 Department of Labor urban workforce development boards to
connect traditional workforce development practices with economic
development. Our member organizations are directly involved in the
implementation of the bipartisan Workforce Innovation and Opportunity
Act (WIOA) of 2014, specifically promoting the successful execution by
local workforce boards of the law to serve businesses, employers, and
job--and career-seekers. The economic recession and recovery caused by
COVID-19 is unlike any other period is our nation's history. MUS
members, along with local workforce development boards across the
country, immediately adapted to continue to provide critical supports
and services to job seekers and businesses throughout the pandemic. Our
methods may have changed given the circumstances, but the impact of our
work persisted, no matter the obstacle.
As the Senate Appropriations Committee considers the Fiscal Year
(FY) 2022 Labor-HHS Appropriations Bill, we urge you to support further
federal investment into WIOA and fully fund the law beyond its FY2020
authorized levels. We strongly support the proposed funding levels in
President Biden's FY 2022 Budget as it recognizes that appropriated
levels have fallen short of authorized levels specifically in Title I
accounts at the Department of Labor (Adult Employment and Training
Services, Youth Workforce Investment Activities, and Dislocated Worker
Employment and Training Services).
Additional federal resources for WIOA programs lead to more job
training, education, skills development and innovative, proven
practices like industry-based sector partnerships, career pathways, and
apprenticeships. MUS works collaboratively in our region and across the
country to advance these best practices. Workers and entire industries
have been severely disrupted as a result of COVID-19 and these
strategies will need to be implemented seamlessly to respond. The
established local workforce system is well-positioned to enhance
efforts for an equitable recovery; low wage, low skill workers and
minority populations were hit hardest by COVID-19. The federal funding
structure, which allows these funds to be invested locally, provides
for intentional investments to help those most in need.
Local workforce development leaders engage directly with businesses
to keep individuals employed and design training/education programs to
prepare the workforce for the future. We continue to work with
unemployed individuals to re-connect them to the workforce and identify
and evaluate other opportunities; recent BLS data suggests nearly 41%
of those unemployed have been unemployed for at least 27 weeks (long-
term unemployed).\1\ Business services, especially for small and
medium-sized enterprises, have been critical during the COVID-19
pandemic as employers sought to maintain payrolls and find workers as
businesses began to re-open. Increased federal appropriations are
greatly needed to address this unprecedented health, economic, and
social destabilization.
---------------------------------------------------------------------------
\1\ https://www.bls.gov/charts/employment-situation/unemployed-27-
weeks-or-longer-as-a-percent-of-total-unemployed.htm.
---------------------------------------------------------------------------
The Fiscal Year 2022 Labor, Health and Human Services, Education,
and Related Agencies Appropriations bill must fully fund all Titles--I,
II, III, and IV--at a minimum to the level authorized by the Workforce
Innovation and Opportunity Act (WIOA).
The funding levels we are requesting in the FY2022 Labor, HHS,
Education Appropriations Bill are listed below:
Title I--Department of Labor
--At least $899.987 million for Adult Employment and Training
Services,
--At least $963.837 million for Youth Workforce Investment
Activities, and
--At least $1.436 billion for Dislocated Worker Employment and
Training Services
Title II--Department of Education
--$678.640 million for Adult Education
Title III--Department of Labor
--$692,370,000 for Wagner-Peyser (FY2021 Enacted)
Title IV--Department of Education
--$3,675,021,000 for Vocational Rehabilitation Services (FY2021
Enacted)
This training, support and business partnership is vital to our
country's economic prosperity. For further information, please contact
Tracey Carey.
Sincerely.
[This statement was submitted by Tracey Carey, Executive Director,
Midwest Urban Strategies.]
______
Prepared Statement of the Moore Center for the Prevention of
Child Sexual Abuse
The Moore Center for the Prevention of Child Sexual Abuse at the
Johns Hopkins Bloomberg School of Public Health (Moore Center) welcomes
the opportunity to submit this statement for the record about the
importance of federal investment in child sexual abuse prevention
research. The Moore Center was founded in 2012 on the premise that
child sexual abuse is a preventable, not inevitable public health
problem. Our mission is to create, through rigorous science, a public
health approach to preventing child sexual abuse. Together with many
stakeholders in the child welfare community, the Moore Center requests
that Congress appropriate $10 million for child sexual abuse prevention
research at the Centers of Disease Control and Prevention's National
Center for Injury and Violence Prevention, Division of Violence
Prevention in FY 2022.
Child sexual abuse and the damage it causes to children, adults,
families, and communities too often makes headlines. Astoundingly,
approximately 13 percent of all children will become victims of the
crime. Child sexual abuse is associated with serious mental and
physical health problems that shorten the lifespan and reduce its
quality. Effects include increased risk for post-traumatic stress
system disorder, substance use disorders (including opioid abuse), HIV,
heart disease, and suicide. Given this, it is no surprise that our 2018
study found that the economic burden of child sexual abuse was $9.3
billion in 2015, and costs each victim more than $280,000 in earning
and other losses over their lifetime.\1\
---------------------------------------------------------------------------
\1\ Letourneau, Elizabeth J., et al. ``The Economic Burden of Child
Sexual Abuse in the United States.'' Child Abuse & Neglect, vol. 79,
2018, pp. 413-422., doi:10.1016/j.chiabu.2018.02.020.
---------------------------------------------------------------------------
The COVID-19 pandemic has further underscored the need for
effective prevention programming. The National Center for Missing and
Exploited Children reported an almost 100 percent increase in online
enticement reports and a 63 percent increase in CyberTipline reports
between January and September 2020, compared to the same months in
2019. Additionally, the International Criminal Police Organization
reported increased consumption of child sexual exploitation and abuse
materials among several member countries during the pandemic. In
addition to increased online offending, data from US and UK Stop it
Now! helplines and websites indicate a surge in requests for help by
people concerned about their own sexual thoughts and behaviors,
particularly stepfathers with sexual thoughts about their
stepdaughters. These increases are likely due to steep pandemic-related
job losses and work-from-home/learn-from-home policies that leave at-
risk men who were previously managing their urges with too much time,
too much access to children, and too little structure. We expect risk
for online and intra-familial offending will remain high until pre-
pandemic employment and in-school education levels are regained.
The federal government rightly funds treatment and other services
for crime victims, including victims of child sexual abuse, and funds
criminal justice efforts to detect, prosecute and hold accountable
those who commit child sexual abuse. Indeed, the federal government
annual spends approximately $529,000,000 solely to incarcerate people
with sex crimes against children in federal facilities. Yet 95 percent
of all sex crimes are committed by people with no prior sex crime
convictions. As important as victim and criminal justice efforts are,
they do little if anything to prevent harm from occurring in the first
place. An inadequate focus on preventing child sexual abuse stands in
stark contrast to robust federal efforts that address all other forms
of child victimization as preventable public health problems and not
solely criminal justice programs. For decades, we have supported the
development, validation, and dissemination of programs such as home
visitation that effectively prevent child physical abuse and neglect,
as well as school-based programs that effectively prevent peer-on-peer
bullying, teen dating violence, and suicide. The lack of similar
strategies to prevent child sexual abuse is primarily due to the
failure to fund similar research in this space.
In the absence of validated prevention efforts, organizations and
individuals that work with children have had to develop and implement
idiosyncratic and untested prevention efforts. Youth serving
organizations, schools, religious groups, sports clubs, after-school
programs, child care settings, hospitals, and other youth-focused
organization have to create and recreate their untested prevention
strategies. Indeed, most states mandate that child sexual abuse
curricula be implemented in K-12 schools, yet few such programs have
been tested for their effectiveness. There is no way to tell if any
given prevention effort might be effective, ineffective, or even
harmful to children in the absence of evaluation.
The FY 2019 appropriations bill directed the CDC to release a
report on the current state of child sexual abuse prevention research.
The report, released in December 2019, outlines significant gaps in
existing research efforts, which include the need to: improve
surveillance systems and data collection; increase the understanding of
risk and protective factors; and, strengthen, develop and disseminate
evidence-based prevention policies, programs and practices.
In FY 2020 $1 million was allocated to the CDC's Division of
Violence Prevention, which funded two grants to study adult child
sexual abuse perpetration prevention. The Moore Center was a recipient
of one of these grants, which is being used to conduct research to
validate our Help Wanted intervention, an online prevention program
designed to provide individuals with sexual interest in younger
children with the support and resources to maintain their commitment to
non-offending. Virginia Commonwealth University was the recipient of
the other grant, which will be used to evaluate Praesidium's Armatus(r)
Learn to Protect program, a program focused on the prevention of school
employee-perpetrated child sexual abuse, misconduct, and exploitation
of students.
In FY 2021 child sexual abuse prevention research received a
$500,000 increase. In response, the CDC published a funding opportunity
announcement for proposals to evaluate approaches on primary prevention
of child sexual abuse perpetrated by youth or adults. The Moore Center
was very appreciative for this increase and recognizes the difficulty
that the budget caps created for giving programs funding increases;
however, it is critical that additional funding is allocated in FY 2022
to address the aforementioned research gaps identified by the CDC. We
believe that a $10 million appropriation would allow for meaningful
advances to be made in the successful prevention of child sexual abuse.
We want all American children to grow up free from abuse; federal
investment in child sexual abuse prevention research is needed to make
this wish a reality. The foundation and philanthropic community
currently supporting prevention research and evaluation cannot continue
to fund it alone. We urge you to include $10 million for research on
the primary prevention of child sexual abuse at the CDC as funding
priority for FY 22.
We look forward to working with the committee on efforts to protect
our children from child sexual abuse and hope that you will consider
the Moore Center a resource in the future. Thank you in advance for
your time and consideration.
[This statement was submitted by Elizabeth J. Letourneau, Ph.D.,
Director, Moore Center for the Prevention of Child Sexual Abuse.]
______
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 2022 report language for a Work-based Learning
Coordinators Demonstration Program 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 117,000 students
in 34 states, Washington D.C., Puerto Rico, and the U.S. Virgin
Islands. NAF is focused on helping to eliminate systemic, educational,
and professional barriers faced by students of color.
Economic upheaval from the pandemic will negatively affect the
young people entering the workforce at a time when communities need
talented workforce to aid in the recovery. It is even more challenging
for students of color and from low-income communities with systemic
inequities who will face lower earnings, less overall wealth, and
greater economic consequences.
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 young adults 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.
Work-based learning is the continuum of activities both in
classroom learning and the actual workplace setting that leads students
to gain real world experience. It also has proven economic benefits for
Black and Latinx students and young people from families with low
incomes. Through work-based learning, virtual and in-person, students
can better identify their career interests and aptitudes, understand
the education and training they need to achieve their aspirations, and
build their professional and support networks.
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 are 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.
Further, 80% of jobs are filled through personal and professional
connections. Work-based learning helps students build these
relationships 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. Young people deserve an
education that builds workforce-ready skills, helps them create social
capital, and connects them to opportunity. This is true in ``normal''
economic times and even more critical during a downturn.
Engaging high school students in work-based learning experiences
ensures these students graduate college, career, and future ready,
which is essential, especially for students who fail to see the
connection between high school academics and future careers. In a
recent study, students enrolled in a NAF program in grade 9 and were
identified as at-risk of not graduating were 5 percentage points more
likely to graduate from high school than their non-NAF counterparts.
NAF academy students have a 99% graduation rate.
Educators often have the challenge of finding time to plan and
implement work-based learning due to their lack of staffing capability
to this particular initiative. With so many demands on school staff,
work-based learning is seen as supplementary and not a priority.
Administrators and teachers who have accountability testing
requirements also push back on the amount of time this strategy
requires outside of the classroom. These educators may lack the
capacity to meaningfully engage employers and develop sustainable
relationships.
Work-based learning coordinators can bridge the divide between
school and community employers. The coordinators support work-based
learning programs by assisting schools and districts with strategic
program planning, coordinating work-based learning activities, and
building relationships with employer partners to increase access to
internships and other career-focused activities.
NAF encourages schools and communities to have work-based learning
coordinators as we have seen it make a difference in the quality and
quantity of experiences for students. NAF urges the subcommittee to
support and advocate for the inclusion of the following report language
in the Fiscal Year 2022 Appropriations bill.
Research shows that participation in work-based learning during
high school has a positive impact on students, including completing
high school, and helps them secure higher-quality jobs, boosting equity
and economic opportunity. To build upon Congress' request of the
Department in Fiscal Year 2021 to encourage local secondary education
authorities be included on local workforce development boards, the
Committee recommends $5,000,000 in Fiscal Year 2022 for the first year
of a five-year demonstration program to provide full-time, work-based
learning coordinators in underserved communities with an already proven
track record for secondary career and technical education. Work-based
learning coordinators to conduct outreach, engagement, recruitment and
coordination of work-based learning activities, including, but not
limited, to paid internships or pre-apprenticeships for high school
students, with local community employers, especially with in-demand
industries of information technology, health sciences, and engineering.
The work-based learning coordinators may be employed by the local
education agency, local workforce development board or local workforce
development agency, a group of employers, or a consortium of eligible
entities. In making grant awards, the Committee directs the Secretary
to ensure to require a plan for evaluations in each individual grant
proposal, including types of work-based learning opportunities
completed, demographics of participating students, and students' post-
secondary career plan, as well as to conduct a national assessment of
all grantee proposals once complete.
conclusion
Though our world is changing rapidly, and we face unprecedented
challenges; we have an opportunity to pave the way for a stronger and
more equitable economy. Work-based learning, including paid
internships, is a proven, effective way to ensure high school students
are college, career, and future ready and prepared to meet the demands
of an evolving economy. NAF appreciates the opportunity to share its
expertise; and thanks you for your consideration of this important
request.
______
Prepared Statement of the National Alliance for Caregiving
Chair Murray and Ranking Member Blunt, and members of the
Subcommittee, thank you for your tireless efforts during the COVID-19
pandemic to ensure that older adults, people with disabilities, and
their caregivers across the nation could access the supports and
services that they needed to survive. As you know, during our historic
collective crisis, Older Americans Act programs that provide community-
based care and services to millions of older adults, caregivers, and
people with disabilities each year, became part of the lifeline that
empowered many to stay safely in their homes. Other vital federal
programs provided critical support for caregivers, who became
increasingly isolated during one of our nation's most challenging
periods. Your Subcommittee's work saved lives and helped to ensure
quality care for millions of people. We are grateful to you and your
staff for all you have done.
As we move into the next phase of the pandemic and recovery, we
submit our funding requests for FY 2022 with the sincere hope that
programs supporting family caregivers will again emerge as a priority
for the Subcommittee. The needs of caregivers in your states and across
the nation, including mid-career Americans who are juggling children
and aging parents, have only become more pronounced. Many have left the
workforce altogether because they needed more support. In the wake of
emergency investments that responded to a historic increase in the
needs of older adults and caregivers during the pandemic, federal
investments cannot simply return to normal.
We urge congressional appropriators to embrace, at a minimum, many
of the recommendations included in the FY 2022 Biden Administration
budget. However, for key, national caregiver support programs, we ask
that you consider going above the Administration's request and fund
these programs at levels that sufficiently recognize the immense
challenges that caregivers of all ages and demographics faced during
the global crisis. Therefore, we ask that you consider the following
appropriations requests which fall under the Administration for
Community Living (ACL) and the Administration on Aging (AoA):
--$334,000,000--Older Americans Act Title III E, National Family
Caregiver Support Program (NFSCP), including $400,000 for the
Recognize, Assist, Include, Support, and Engage (RAISE) Family
Caregivers Council
--$21,600,000--Older Americans Act Title VI, Native American
Caregiver Support Services
--$14,200,000--Lifespan Respite Care Program
--$5,000,000--Care Corps Community Care Corps Grants
--$35,000,000 Alzheimer's Disease Program Initiatives (ADPI):
In addition, we ask that you provide $20,000,000 for the BOLD
Infrastructure for Alzheimer's Act initiatives under the Centers for
Disease Control and Prevention. These funding requests align with those
of national coalitions that focus on caregiving, including. the
Leadership Council of Aging Organizations (LCAO), Leaders Engaged in
Alzheimer's Disease (LEAD), and the Eldercare Workforce Alliance (EWA).
I submit these requests and this testimony as the President and
Chief Executive Officer of the National Alliance for Caregiving (NAC).
NAC's mission is to build partnerships in research, advocacy, and
innovation to make life better for family caregivers. Our work aims to
support a society which values, supports, and empowers family
caregivers to thrive at home, work, and life. As a 501(c)(3) charitable
non-profit organization based in Washington, D.C., we represent a
coalition of more than 60 non-profit, corporate, and academic
organizations; nearly 40 family support researchers with expertise in
pediatric to adult care to geriatric care; advocates who work on
national, state, and local platforms to support caregivers across over
30 states. In addition to our national work, NAC leads and works
closely with peer organizations in countries such as Australia, Canada,
Denmark, Finland, France, Hong Kong, India and Nepal, Ireland, Israel,
Japan, New Zealand, Sweden, Taiwan, and the United Kingdom. You can
learn more about NAC and our work at www.caregiving.org.
Background: For the purposes of this testimony, the term
``caregiver'' is defined as it is in the RAISE Family Caregivers Act. A
caregiver is ``an adult family member or other individual who has a
significant relationship with, and who provides a broad range of
assistance to, an individual with a chronic or other health condition,
disability, or functional limitation.'' \1\ Many on this committee have
been personally impacted by family caregiving. We appreciate your
leadership and that of your colleagues in the Senate and House who have
spoken openly, and candidly, about the realities of caregiving.\2\
Those experiences, along with 53 million other Americans who support a
friend or family member, form the backbone of our long-term care
systems.
---------------------------------------------------------------------------
\1\ From P.L. No: 115-119, available at https://www.congress.gov/
bill/115th-congress/house-bill/3759. In research and in advocacy,
``caregiver'' may be described as: informal caregiver, care partner,
caretaker, and related terminology. In an international context, the
term ``carer'' is often used. It should be noted that an estimated 1.4
million children in the U.S. are unpaid caregivers (NAC and United
Hospital Fund, Young Caregivers in the U.S. (2005) at https://
www.caregiving.org/data/youngcaregivers.pdf).
\2\ See Congressional Stories of Family Caregiving (November 2017),
https://www.caregiving.org/wp-content/uploads/2018/02/GSA-
Congressional-Stories-of-Caregiving-briefing-paper.pdf.
---------------------------------------------------------------------------
Family caregiving is a public health issue. In a nationally
representative research study NAC conducted with AARP and released last
year, we identified some of the common issues facing caregivers
today.\3\ Just in the last five years, 9.5 million more people have
taken on caregiving, and we anticipate additional caregivers because of
the coronavirus pandemic. Compared to 2015, family caregivers have
faced more confusing care pathways and face a ``ripple effect'' on
their mental health, physical health, and financial health. About 1 in
5 (18%) of caregivers feel financial strain due to caregiving.
Caregivers often must work less, spend more money out-of-pocket, and
save less for retirement. More people are caring for someone for up to
five years when compared to five years ago--and these caregivers are
more likely to care for someone with multiple care needs. Yet we know
from economic analysis that when supported, family caregivers can
improve health outcomes for individuals, reduce health care costs, and
improve population health.
---------------------------------------------------------------------------
\3\ National Alliance for Caregiving and AARP Public Policy
Institute, Caregiving in the U.S. 2020 (May 2020), Caregiving in the
U.S. 2020--NAC/AARP Research Report
---------------------------------------------------------------------------
Investing in supports and services for caregivers makes sense. Even
modest investments could add an additional $1.7 trillion to the U.S.
GDP by 2030.\4\ New analysis from BlueCross BlueShield \5\ likewise
anticipates that supporting caregivers can improve population health
and reduce costs. Without support, caregivers who were also
commercially insured beneficiaries faced worse overall health, and a
higher prevalence of cost-driving health conditions including anxiety,
major depression, adjustment disorder, behavioral health disorders, and
hypertension. Given the macroeconomic impact of investing in family
caregivers, we respectfully request that this committee prioritize the
following FY 2022 federal investments in this essential population.
---------------------------------------------------------------------------
\4\ AARP. The Economic Impact of Supporting Working Family
Caregivers (2021), available at https://www.aarp.org/content/dam/aarp/
research/surveys_statistics/econ/2021/longevity-economy-working-
caregivers.doi.10.26419-2Fint.00042.006.pdf, https://doi.org/10.26419/
int.00042.006.
\5\ See, BlueCross BlueShield. The Impact of Caregiving on Mental
and Physical Health (9/9/20), last accessed 5/25/21, https://
www.bcbs.com/the-health-of-america/reports/the-impact-of-caregiving-on-
mental-and-physical-health.
---------------------------------------------------------------------------
OAA Title III E-National Family Caregiver Support Program:
We request $334,000,000 for the Older Americans Act's (OAA) Title
III(e), National Family Caregiver Support Program (NFCSP), which is a
critical cornerstone to supporting the dignity and independence of
older adults, adults with disabilities, and the friends or family who
provide care to them. NFCSP offers an entry point for identifying
caregiver needs and can help to address the need for caregiver
education, respite, and support. Since 2000, the program has provided
grants to states and territories to help older adults and people with
disabilities stay in the home as long as possible. The NFCSP offers
five core services including information about available services to
caregivers; assistance to gain access to services; individual
counseling, organizational of support groups, and caregiver education;
respite care, to allow caregivers to take a break; and other important
supplemental services. The NFCSP remains the only nationally
administered program to provide supports and services to caregivers of
older adults and people with disabilities.
Within the National Family Caregiver Support Program, we ask you to
continue--at a minimum--funding the important and groundbreaking work
of the Recognize, Assist, Include, Support, and Engage (RAISE) Family
Caregivers Council. The Administration requested $400,000 for this
ongoing work in their FY 2022 budget request, which would allow the
RAISE Family Caregivers Council to work toward fulfilling its mission
to develop a national strategy to address the needs of family
caregivers of all ages and circumstances.
OAA Title VI C-Native American Caregiver Support Services:
Title VI of the OAA provides grants to eligible Tribal
organizations to promote the delivery of home and community-based
supportive services (HCBS), including nutrition services and support
for family and informal caregivers, to Native American, Alaskan Native,
and Native Hawaiian elders. During the COVID-19 crisis, we witnessed
tragic devastation among tribal elders and their families. Therefore,
we ask you to fund vital caregiver support programs at $21,600,000,
which would fully double the investment in these programs and continue
important support for tribal caregiving communities still recovering
from the ravages of the pandemic.
Lifespan Respite Care Program:
The Lifespan Respite Care Program, administered through the
Administration for Community Living, provides short-term care that
offers individuals or family members temporary relief from the daily
routine and stress of providing care. The program strengthens family
stability and maintains family caregiver health and well-being by
providing often desperately needed respite to exhausted and at-risk
caregivers. Additionally, respite care proved through this program can
save additional federal dollars by helping to delay, or altogether
avoid, out-of-home placements or hospitalizations. Only 14 percent of
family caregivers report having used respite care service, despite
nearly 38 percent feeling respite would be helpful. We urge your
Subcommittee to adopt the President's budget request of $14,200,000 for
this vital program.
Community Care Corps Grants:
Within ACL's program portfolio, we urge you to continue to fund the
important work of the Community Care Corps Grant program at $5,000,000.
The Community Care Corps supports innovative local models in which
trained volunteers assist family caregivers or directly assist older
adults or adults with disabilities in maintaining their independence.
These volunteers provide critical non-medical support and companionship
to supplement their other caregiving options and relieve over-burdened
family caregivers and help meet the growing demand for services from a
large and growing aging and disability population.
Alzheimer's Disease Program Initiatives (ADPI) and BOLD Act
Initiatives:
Within both the Administration for Community Living and the Centers
for Disease Control and Prevention, there are two important programs
that support those caring for Alzheimer's disease and related dementias
(ADRDs). ADPI supports HCBS for people living with ADRD and their
caregivers through grants to states, communities, and Tribal entities.
To support the important work of ADPI, we hope your committee will
support a $35,000,000 FY 2022 funding request. Within CDC, the Building
Our Largest Dementia (BOLD) Infrastructure for Alzheimer's Act
Initiatives establish an effort within the Centers of Excellence in
Public Health Practice dedicated to promoting Alzheimer's disease
management and caregiving interventions. We encourage your Subcommittee
to include $20,000,000 to support the BOLD Initiatives.
In closing, these vital federal efforts and programs that support
millions of family caregivers across the country have a profound impact
on the quality of life. They can reduce caregiver depression, anxiety,
and stress, enabling caregivers to provide care longer and thereby
avoiding or delaying the need for costly hospital and institutional
care. On behalf of myself, the National Alliance for Caregiving, other
national aging and disability advocates, and countless caregivers
across the country, I implore you and your Subcommittee to support FY
2022 funding levels for these programs that recognize and respect the
immense contribution of caregivers to society. Thank you again for all
you have done and will do for older adults and individuals with
disabilities and their caregivers.
[This statement was submitted by C. Grace Whiting, J.D., President
and CEO, National Alliance for Caregiving.]
______
Prepared Statement of the National Alliance for Eye and Vision Research
executive summary
NAEVR, which serves as the ``Friends of the National Eye
Institute,'' is a 501(c)4 non-profit advocacy coalition comprised of 50
organizations involved in eye and vision research, including
ophthalmic/optometric professional societies, patient and consumer
groups, private funding foundations, and industry. NAEVR is immensely
grateful to Congress, especially the House and Senate Appropriations
Subcommittees on Labor, Health and Human Services, and Education
(LHHS), for the strong bipartisan support for National Institutes of
Health (NIH) funding increases from Fiscal Years (FY) 2016 through
FY2021. The $12.85 billion NIH increase in that timeframe has helped
the agency regain ground lost after a decade of effectively flat
budgets.
This past investment in NIH has not only improved our understanding
of fundamental life and health sciences but also prepared the nation to
combat unprecedented health threats, including the COVID-19 pandemic,
and promoted ever-evolving medical advances. To maintain this momentum
in FY2022, NAEVR strongly supports the NIH program funding level of
$51.95 billion as proposed by President Biden, including no less than
$46.1 billion for NIH's base program level budget [absent proposed
funding for the Advanced Research Projects Agency-Health (ARPA-H)], an
increase of at least $3.177 billion or 7.4 percent (as compared to the
Administration's proposed $45.45 billion NIH base funding level, which
is a $2.51 billion or 5.9 percent increase), to enable NIH's base
budget to keep pace with the Biomedical Research and Development Price
Index (BRDPI) and allow for 5 percent growth. This increase is
necessary to support promising science across all Institutes and
Centers (ICs), ensure continued Innovation Account funding established
through the 21st Century Cures Act for special initiatives, and support
early-stage investigators.
NAEVR also urges one-time emergency funding for federal research
agency ``research recovery'' investment to enable NIH to mitigate the
pandemic-related disruptions without foregoing promising new science.
NAEVR supports the bipartisan Research Investment to Spark the Economy
(RISE) Act (H.R. 869/S. 289) which includes $10 billion for NIH
(although at the Subcommittee's May 26, 2021, hearing NIH Director
Francis Collins, MD, PhD estimated that the pandemic shutdown resulted
in a $16 billion loss to its biomedical enterprise). Though pandemic-
related lab closures impacted all researchers, the situation was
especially acute for early-stage investigators. NAEVR's educational
foundation Alliance for Eye and Vision Research (AEVR) documented this
impact in a September 2020 video discussion engaging 22 Emerging Vision
Scientists who described the chilling effect on their research,
collaborations, training, and overall career pathway (a journal article
version of this discussion will be published on July 1, 2021, in JAMA
Ophthalmology),
NAEVR also urges Congress to fund the National Eye Institute (NEI)
at $900 million, a $64.3 million or 7.7 percent increase over FY2021
that reflects both biomedical inflation and growth as compared to the
Administration's $858.4 million funding level, a $22.83 million or 2.7
percent increase. Despite NEI's total $160 million funding increases in
the FY2016-2020 timeframe, its enacted FY2021 budget of $835.7 million
is just 19 percent greater than the pre-sequester FY2021 funding of
$702 million. Averaged over those nine fiscal years, the 2.1 percent
annual growth rate is still less than the average annual biomedical
inflation rate of 2.7 percent, thereby eroding purchasing power. In
fact, NEI's FY2021 purchasing power is less than that in FY2012.
The NEI currently faces an increasing burden of vision impairment
and eye disease due to an aging population, the disproportionate risk/
incidence of eye disease in fast-growing minority populations, and the
impact on vision from numerous chronic diseases (such as diabetes) and
their treatments/therapies. Especially with the COVID-19 pandemic, the
NEI faces additional challenges, as both the working age population and
students have relied almost exclusively on electronic communications
devices and e-learning platforms which can increase the rates of
myopia, dry eye, eye strain, and other vision disorders.
Maintaining the momentum of vision research is vital to vision
health, as well as to overall health and quality of life. Since the US
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 age 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) in order 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.
congress must robustly fund the nei as it addresses the increasing
burden of vision impairment and eye disease
NEI's FY2021 enacted budget of $835.7 million is less than 0.5
percent of the $177 billion annual cost (inclusive of direct and
indirect costs) of vision impairment and eye disease, which was
projected in a 2014 Prevent Blindness study to grow to $317 billion--or
$717 billion in inflation-adjusted dollars--by year 2050. Of the $717
billion annual cost of vision impairment by year 2050, 41 percent will
be borne by the federal government as the Baby-Boom generation ages
into the Medicare program. A 2013 Prevent Blindness study reported that
direct medical costs associated with vision disorders are the fifth
highest--only less than heart disease, cancers, emotional disorders,
and pulmonary conditions. The U.S. is spending only $2.53 per-person,
per-year for vision research, while the cost of treating low vision and
blindness is at least $6,680 per-person, per-year. [http://
costofvision.preventblindness.org/]
A May 2021 JAMA Ophthalmology article reported that more than 7
million people in the U.S. are living with uncorrectable vision loss,
including more than 1 million with blindness. Of those living with
vision loss and blindness, nearly 1 in 4 are under the age of 40, while
20 percent of all people aged 85 and older experience permanent vision
loss. More females than males experience permanent vision loss or
blindness, and the Hispanic and African American populations experience
a higher risk of vision loss. This study's research methods allowed for
a broader analysis of populations in the U.S. (including individuals
under age 40) than that used in previous national estimates of vision
loss and blindness. [doi:10.1001/jamaophthalmol.2021.0527]
In an August 2016 JAMA Ophthalmology article, AEVR reported from a
national attitudinal survey that a majority of Americans across all
racial and ethnic lines describe losing vision as having the greatest
impact on their day-to-day life. Other studies have reported that
patients with diabetes who are experiencing vision loss or going blind
would be willing to trade years of remaining life to regain perfect
vision, since they are concerned about their quality of life.
[doi:10.1001/jamaophthalmol.2016.2627]
Investing in vision health is an investment in overall health.
NEI's breakthrough research is a cost-effective investment, since it
leads to treatments and therapies that may delay, save, and prevent
health expenditures. It can also increase productivity, help
individuals to maintain their independence, and generally improve the
quality of life--as vision loss is associated with increased
depression/accelerated mortality.
In summary, NAEVR supports the President's request for $51.95
billion in NIH funding but urges the Subcommittee to appropriate no
less than $46.1 billion for NIH's base program level and $900 million
for the NEI. NAEVR also supports one-time emergency ``research
recovery'' investment to mitigate the pandemic-related disruptions
without foregoing promising new science.
NAEVR thanks the Subcommittee for the opportunity to submit this
written testimony, especially as it continues to grapple with the long-
term challenges from the COVID-19 pandemic.
For more information, visit NAEVR's Web site at
www.eyeresearch.org.
[This statement was submitted by James Jorkasky, Executive
Director, National Alliance for Eye and Vision Research.]
______
Prepared Statement of the National Alliance for Public Charter Schools
Madam Chair and Members of the Subcommittee, I am pleased to
present the views of the National Alliance for Public Charter Schools
on the fiscal year (FY) 2022 appropriation for the Charter Schools
Program (CSP), which is administered by the U.S. Department of
Education. I thank the Subcommittee for maintaining strong support for
the CSP, including by providing $440 million for FY 2021. The CSP plays
a critical role in expanding educational opportunities for families and
in improving educational outcomes nationwide. As the Subcommittee
considers the FY 2022 Labor, Health and Human Services, Education and
Related Agencies appropriation, we request an increase in funding for
the CSP to at least $500 million.
We support the Administration's proposed investments in programs
that will benefit all public school students, including the Title I
program and the Individuals with Disabilities Education Act. These
increases, along with the other COVID relief funds, will help charter
schools, like other public schools, address the many challenges they
face after the pandemic-related shutdowns. At the same time, we were
disappointed to see that the Administration's budget proposal called
for flat funding of the CSP. The CSP is the only source of federal
funding to support the growth of high-quality charter schools in the
communities that need them most. Given charter schools' history of
educating students with disadvantages in diverse situations, a $60
million increase for the CSP will deliver outsized returns.
the operation of charter schools during the pandemic
The COVID-19 pandemic has been extremely challenging for charter
schools, just as for all other public schools. Most had to pivot
quickly from on-site instruction to distance learning, ensure that
teachers had the skills and knowledge to deliver online instruction
effectively, overcome disparities in student access to technology, and
address many other challenges. Fortunately, charter schools are used to
innovating and adapting to meet changing needs, and in this time of
crisis they were able to leverage their autonomy effectively. A recent
report released in partnership with Public Impact found that small
charter 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. Parents have responded accordingly: an April
2021 survey of more than 2,700 parents nationwide found that 65 percent
believe that choices like charter schools and learning pods would be
``extremely or very effective'' in helping students in their state.
Parents want more opportunities for their kids, and charter schools are
one critical way of providing them.
understanding charter schools and their accomplishments
In recent years, and notwithstanding charter schools' achievements
and significant efforts to meet the needs of students during the
pandemic, we have seen a number of misconceptions emerge about charter
schools. To be clear, charter schools are public schools, supported by
taxpayers, and open to all students, without entrance requirements. The
CSP is the only federal K-12 program that requires its recipients to be
open enrollment. Each State decides who may authorize charter schools
and how schools will be held accountable for meeting the goals laid out
in their charters. And charter schools, as public schools of choice,
are ultimately accountable to parents: if a charter school is not
delivering for families, it will not remain open. Moreover, while
charter schools typically have more flexibility than district schools--
such as to set curriculum, hire teachers and staff, and adapt to meet
the needs of their students--they are required to meet the same
academic testing and Title I accountability requirements as other
public schools.
Most importantly, although there is some variety in charter school
performance, in the main they are delivering. The 2015 Urban Charter
School Study, from the Center for Research on Education Outcomes
(CREDO) at Stanford University, found that students in urban charter
schools gained an average of 40 additional days of learning per year in
math and 18 days in reading, compared to their non-charter-school
peers. Moreover, the study found that the longer a student attends an
urban charter school, the greater the gains: four or more years of
enrollment in such a school led to 108 additional learning days in math
and 72 in reading.
More recently, a 2020 study from the Program on Education Policy
and Governance at Harvard University found greater academic gains for
students in charter schools than for students in traditional public
schools who took the reading and math assessments administered by the
National Assessment of Educational Progress (NAEP) in fourth and eighth
grade between 2005 and 2017. African American and low-income students
attending charter schools 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
First authorized in 1994 through the bipartisan efforts of
President Bill Clinton and Congressional leaders, the CSP was
originally created to support the start-up costs of new schools. Since
then, the program has enjoyed strong support from Presidents and
Members of Congress from both parties, and has expanded to address the
changing needs of the movement.
Since its inception, Congress has appropriated some $6.3 billion
for the CSP. To put that number in context, it amounts to less than 2
percent of the appropriation for ESEA Title I LEA Grants over that same
time period. This modest investment has helped the number of charter
schools grow from only a handful in the early 1990s to around 7,500
schools and campuses today that serve around 3.3 million public school
students. CSP has made many of those schools possible by supporting
non-sustained start-up costs not covered by per-pupil funding-such as
planning, staff training, equipment and materials, renovations,
recruitment, and other necessary start-up activities. In addition,
State appropriations have often not given charter schools the same
level of per-pupil support as non-charter schools, and often have not
addressed their facilities needs. The majority of all charter schools,
therefore, have needed CSP grants to open.
The CSP makes it possible for new charter schools to open to
address changing community needs. One such school--Lumen High School in
Spokane, WA--received a 2020 subgrant from the Washington State Charter
Schools Association, a 2019 State Entity CSP grant recipient. Lumen is
a dual-generational school designed to meet the layered need of teen
parents. It offers childcare and early childhood education,
incorporates parenting skills in the curriculum, and offers critical
wraparound services to eliminate barriers that might keep parenting
teens from accessing education. When the COVID-19 pandemic struck,
Lumen's founding Executive Director was offered the chance to delay
opening for a year but chose to put the needs of her community first
and open in the midst of the pandemic because, as she explained, ``our
students need school now.'' Increased CSP funding makes it possible for
schools like Lumen to open in the communities that need them most.
Charter school enrollment has grown rapidly, but it has not kept up
with family demand. Surveys indicate that some 3.3 to 3.5 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.
fiscal year 2022 request
As previously noted, our request for FY 2022 is $500 million-a $60
million increase that would be a wise investment. Within the account,
funds should be allocated to programs with floors and ceilings so that
the Department can shift funds according to the needs of the field from
one year to the next. $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 reduce wait lists and
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. It will also help ensure funds are
available for states that have recently strengthened their charter
school laws, including Iowa, Wyoming, and West Virginia.
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, such as municipal bonds, property tax revenues, and State
school facilities programs. 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.
conclusion
The National Alliance for Public Charter Schools takes great pride
in the growth and accomplishments of public charter schools over the
last quarter century. Our schools' enrollments continue to climb, and
more and more studies have found that charter schools are succeeding:
they increase achievement and meet the other needs of a diverse and
often historically underserved student population. This success could
not have been achieved without the CSP. We ask that you continue that
support and accept our recommendation for $500 million for FY 2022.
[This statement was submitted by Nina Rees, President and CEO,
National
Alliance for Public Charter Schools.]
______
Prepared Statement of the National Alliance on Mental Illness
Chairwoman Murray, Ranking Member Blunt and Members of the
Subcommittee, on behalf of the National Alliance on Mental Illness,
thank you for the federal investments in mental health crisis response
that you have supported and made possible so far. I appreciate the
opportunity to discuss NAMI's priorities, many of which we share, as
evidenced by the hearing this Subcommittee held last week on building a
robust crisis response system. Without personnel who are trained to
handle mental health emergencies, and without the infrastructure in
place, the default response to many people in crisis is a law
enforcement response, which often ends in trauma or tragedy. In fact,
one in four fatal police shootings are of people with mental illness,
with one in three being people of color. The lack of effective crisis
response also burdens emergency departments (EDs) that are ill-equipped
for mental health crises, despite the fact that one of every eight ED
visits is related to a mental health or substance use disorder. But as
you said in your statement, Madame Chairwoman, there is something we
can do about it. Thank you for your leadership.
NAMI is grateful that Congress passed the bipartisan National
Suicide Hotline Designation Act of 2020, which created 988 as a three-
digit mental health and suicide crisis line that will go live
nationwide by July 16, 2022. This alternative to 911 gives communities
the opportunity to transform care by developing 988 crisis response
systems with the core elements described in SAMHSA's National
Guidelines for Crisis Care: 1) crisis call centers, 2) mobile crisis
teams, and 3) crisis receiving and stabilization programs. Crisis call
center hubs, staffed by people well-trained in crisis response, can
assist the vast majority of people calling with a behavioral health
crisis. For those who need more, mobile crisis teams provide an in-
person response and are able to effectively de-escalate the majority of
behavioral health crises and connect people to follow-up services. In
situations where needs are more acute, crisis receiving and
stabilization services provide safe, therapeutic settings that reduce
reliance on ED visits and can avoid the need for hospitalization.
While there is a clear vision for successful 988 crisis response
systems, few systems meet the standards needed to realize this vision.
Currently, National Suicide Prevention Lifeline (Lifeline) call centers
rely on a patchwork of inadequate funding, leaving insufficient
capacity to meet current needs, let alone the increased demand that
will be spurred by the adoption of 988. There is growing availability
of mobile crisis teams, but demand still far outstrips supply,
particularly for children and adolescents. There is a dearth of crisis
stabilization programs nationwide, and widespread shortages of
behavioral health professionals to staff crisis response systems.
Robust federal investment is required to realize the promise of 988
to deliver a mental health response to mental health crises. Some
states are adopting 988 user fees, but those fees are minimal and will
support only a portion of 988 crisis system costs. Medicaid rarely
covers the full costs of the core services--and it does not cover
services for people who are not Medicaid-eligible. Without federal
support, communities will be unable to develop and sustain a crisis
infrastructure that ensures a mental health response will be available
for mental health crises.
To help communities develop capacity for the critical first element
of a 988 crisis system, crisis call center response, NAMI strongly
recommends including $240 million in FY2022 for the National Suicide
Prevention Lifeline. This recommendation is based on an initial
analysis from Vibrant Emotional Health, the current administrator of
the Lifeline. This will provide needed funding to expand capacity for
988 calls, chats, and texts, including implementing technology,
enhancing standards and training, and providing nationwide back-up for
local call centers.
In FY2021, this Subcommittee included an additional $35 million in
the Mental Health Block Grant to fund a 5% set-aside for Crisis Care
Services. While this was a valuable start and we are grateful for this
investment that is helping states develop crisis services, especially
mobile crisis teams, the need is substantial. That is why NAMI is
requesting a 10% set-aside for crisis services in FY2022 to provide
critical funds to both start up crisis services and to support the many
costs of crisis care that are not covered by Medicaid or insurance
plans.
NAMI is also requesting $12.5 million for the SAMHSA Strengthening
Community Crisis Response Systems program. When someone experiences a
mental health crisis, they often wind up in hospital emergency
departments (EDs) where they frequently end up waiting in hallways,
sometimes for days, before being admitted to an inpatient or
residential facility. This practice, referred to as ``ED boarding,'' is
harmful to patients and strains already-burdened EDs. The $12.5 million
we are requesting will help communities reduce the traumatic practice
of ED boarding by providing intensive crisis services, such as crisis
receiving and stabilization programs, and by implementing databases of
beds at inpatient and residential behavioral health facilities that
help reduce the wait for intensive treatment.
These three programs, while important, are only part of realizing
the promise of a successful crisis response system. And while some of
the needed investments fall outside this Subcommittee's jurisdiction, I
believe it is important to give you the full picture of what is
required to effectively implement a comprehensive 988 crisis response
system over the next several years.
Whether through the annual appropriations process, broader efforts
to upgrade our country's infrastructure, or other means, Congress must
invest $10 billion over the next 10 years in 988 infrastructure in
three key areas: 1) Supporting capital projects and operations, 2)
Increasing the behavioral health workforce, and 3) Ensuring Medicare,
Medicaid, and TRICARE coverage. I would like to give you a quick
overview of what is needed in each area.
First, supporting 988 capital projects and operations. To build a
mental health crisis system that relies on well-equipped 988 call
centers as the first point of contact, federal support of the national
Lifeline should be supplemented by federal authorization and funding,
based on SAMHSA's projections, to support operations at 180+ local
Lifeline call centers across the country. This will ensure that people
get connected to services when and where they need them.
In addition, communities need support for capital expenses to
expand crisis services, such as mobile crisis team vans, facilities for
crisis receiving and stabilization and peer respite programs, and call
center infrastructure. Congress should expand funding and broaden the
uses of the Health Resources and Services Administration's (HRSA)
current Capital Development Grants to include crisis system
infrastructure.
Second, increasing the behavioral health workforce. As the
Subcommittee knows, behavioral health workforce shortages pose
challenges for health systems, including crisis response. Congress can
help by significantly expanding behavioral health workforce training
programs, including HRSA's Behavioral Health Workforce Education and
Training (BHWET) and Graduate Psychology Education (GPE) programs, as
well as SAMHSA's Minority Fellowship Program (MFP). In addition, to
help recruit and retain skilled staff, HRSA's National Health Service
Corps Loan Repayment Program criteria must be expanded to include
crisis call centers, mobile crisis teams, crisis receiving and
stabilization programs, and Certified Community Behavioral Health
Clinics.
Third, ensuring Medicare, Medicaid, and TRICARE coverage of crisis
services. It is also vital that Medicare, Medicaid, and TRICARE cover
mobile crisis and crisis stabilization services. Together, these
programs cover tens of millions of people, many of whom will experience
mental health and suicidal crises and deserve an appropriate response.
Peer support specialists in particular play critical roles in crisis
services yet are not covered providers under Medicare. That must
change. Finally, to maximize access to behavioral health crisis
services, Congress should make permanent the current flexibilities for
Medicare coverage of telehealth behavioral health services.
It is NAMI's priority to ensure that an effective 988 crisis
response system infrastructure is developed across the country and we
are grateful for this Subcommittee's support. We recognize that it is
also important to invest in research and a wide range of prevention,
intervention, and recovery programs at SAMHSA, including Certified
Community Behavioral Health Clinics, that help people get on a path of
recovery. To that end, we urge your consideration of the Mental Health
Liaison Group (MHLG) recommendations for FY2022 appropriations. NAMI
also offers our strong support for the President's FY2022 proposed
budget of $1.6 billion for the community mental health block grant and
$1 billion to increase mental health professionals in schools.
Thank you for this opportunity and for the leadership you have
demonstrated in advancing mental health care. I look forward to working
with you to put in place the infrastructure to support a 988 crisis
response system and transforming mental health care in America.
[This statement was submitted by Angela Kimball, National Director
of Advocacy & Public Policy, National Alliance on Mental Illness.]
______
Prepared Statement of the National Alliance to End Sexual Violence
The National Alliance to End Sexual Violence (NAESV) is the voice
in Washington for the 56 state and territorial sexual assault
coalitions and 1500 local programs working to end sexual violence and
support survivors. The programs included in the Violence Against Women
Act (VAWA) are a vital part of local programs' work to support
survivors and end sexual violence. This testimony focuses specifically
on the Rape Prevention & Education Program (RPE), a VAWA program
located at the Centers for Disease Control, Injury Center, and the need
to increase funding for the program from $51.75 million to $100 million
in FY 22 as recommended by the President's budget and include report
language requiring the collaboration with state sexual assault
coalitions in the program. We are grateful to the committee for the $1
million increase for RPE in FY 21, however, increased funding is
desperately needed.
RPE formula grants, administered by the CDC Injury Center, provide
essential funding to states and territories to support rape prevention
and education programs conducted by rape crisis centers, state sexual
assault coalitions, and other public and private nonprofit entities. In
the past few years, demand for programs funded by RPE have skyrocketed,
the evidence base has progressed significantly, the current
appropriation is very nearly the authorized level, and further
investment in the program is desperately needed. The #MeToo movement,
the national focus on campus sexual assault, and high-profile cases of
sexual violence in the media have increased the need for comprehensive
community responses to sexual violence but have also increased the
demand for prevention programs beyond providers' capacity.
According to the National Intimate Partner and Sexual Violence
Survey (CDC, 2015 national data):
--21% of women and 3% of men reported completed or attempted rape
ever in their lifetime.
--Among victims of rape, 43% (11 million) of females and 51% (1.5
million) of males reported it occurred for the first time
between the ages of 11-17.
If our children are to face a future free from sexual violence, RPE
must be increased. The RPE program prepares everyday people to become
heroes, getting involved in the fight against sexual violence and
creating safer communities by engaging boys and men as partners;
supporting multidisciplinary research collaborations; fostering cross-
cultural approaches to prevention; and promoting healthy, non-violent
social norms, attitudes, beliefs, policies, and practices.
We know RPE is working.
A 2016 study conducted in 26 Kentucky high schools over 5 years and
published in American Journal of Preventive Medicine found that an RPE-
funded bystander intervention program decreased not only sexual
violence perpetration but also other forms of interpersonal violence
and victimization.
``The idea that, due to the effectiveness of Green Dot, ... there
will be many fewer young people suffering the pain and devastation of
sexual violence: This is priceless.'' Eileen Recktenwald, Kentucky
Association of Sexual Assault Programs
Across the country, states and communities are engaged in cutting-
edge prevention projects:
--Connecticut's Women & Families Center developed a multi-session
curriculum addressing issues of violence and injury targeting
middle school youth.
--Oklahoma is working with domestic violence and sexual violence
service agencies, public and private schools, colleges and
other community-based organizations to prevent sexual violence.
--Alaska's Talk Now Talk Often campaign is a statewide effort
developed in collaboration with Alaskan parents, using
conversation cards, to help increase conversations with teens
about the importance of having healthy relationships.
--Kansas is looking closely at the links between sexual violence and
chronic disease to prevent both.
--Maryland's Gate Keepers for Kids program provides training to
youth-serving organizations to safeguard against child sexual
abuse.
--Missouri is implementing ``Green Dot'' bystander education
statewide to reduce the rates of sexual violence victimization
and perpetration.
--North Carolina was able to ensure sustainability of its consent-
based curriculum by partnering with the public-school system to
implement their sexual violence prevention curriculum in every
8th grade class.
--Washington is implementing innovative skill building projects that
amplify the voices of historically marginalized communities,
such as LGBTQ youth, teens with developmental disabilities,
Asian American & Pacific Islander teens, & Latino parents &
children.
Why increase funding for RPE?
The societal costs of sexual violence are incredibly high including
medical & mental health care, law enforcement response, & lost
productivity. 2017 research sets the lifetime economic burden of rape
at $122 million per victim and also reveals a strong link between
sexual violence and chronic disease.
The national focus on campus and military sexual assault as well as
high profile cases of sexual violence in the media have increased the
need for comprehensive community responses to sexual violence but has
also increased the demand for prevention programs beyond providers'
capacity.
A Missouri program reported: ``The demand for our services has
increased about 18% both in 2014 and in 2015. Increased awareness and
increased need (crime) are most likely contributors to this trend.
There are limited resources available for prevention education. In
addition, new government requirements/laws, such as with Title IX and
PREA, have contributed to referrals to our organization. Our
organization always works to increase support from local resources, but
funding is extremely competitive and limited.''
A Massachusetts program reported: ``With Title IX in the news,
requests for prevention education have increased...We are saying no to
many requests for education because of capacity issues. We are unable
to build and sustain relationships with other underserved communities
because of a lack of capacity.''
A Nebraska program reported: ``I am hugely dismayed at the lack of
funding for prevention...It's noble to provide direct services to
victims of sexual violence, but if we don't provide prevention monies,
then we are just a band-aid. It's terribly frustrating.''
Funded involvement of state sexual assault coalitions is imperative for
the success of RPE.
RPE was first authorized in the original 1994 version of the
Violence Against Women Act (VAWA) and has been reauthorized
subsequently with each iteration of VAWA. RPE was the brainchild of
National Alliance to End Sexual Violence (NAESV) founder, Gail Burns-
Smith, as a coordinated federal response to the prevention of sexual
violence. While funding goes to state health departments, the original
intent of the RPE program was to fully involve state sexual assault
coalitions and rape crisis centers as leaders in this work because of
their vast experience in addressing sexual violence. Over the years,
the level of involvement of state coalitions has varied between states
and has ebbed and flowed. At the same time, there are states in which
the state sexual assault coalition has never been meaningfully involved
in RPE.
During 2019, NAESV met with state sexual assault coalitions and
conducted two membership surveys. While some state coalitions continue
to have good and strong working relationships with their state health
departments and feel positively about how RPE is being administered,
based on our research, over half of the state sexual assault coalitions
are dissatisfied or very dissatisfied with how RPE is being
administered. This past year, there have been changes in some states
that have resulted in both concerns about state approaches to RPE and
elimination of some state sexual assault coalitions involvement in RPE-
funded prevention work. Our research also found that:
1. One in four coalitions expressed a concern about lack of sexual
violence expertise in the administration of RPE at the state level.
2. 30% of coalitions have concerns about lack of collaboration and
leadership.
3. Over 60% of coalitions thought there was too little involvement
of community based sexual assault programs in the work of RPE.
NAESV has concluded, with the complete consensus of state sexual
assault coalitions, that enough states are having a problem to warrant
a legislative solution. Communities deserve the best, most well-
informed prevention efforts especially in this era where demand and
interest in sexual violence prevention is so high. We know, with the
funded involvement of state sexual assault coalitions and increased
funding, RPE can be an even more powerful tool in ending sexual
violence. The field looked to other successful national formula grants
designed to address violence against women as a guide in developing a
legislative proposal. The STOP and Sexual Assault Services (SASP)
Programs at the Department of Justice Office on Violence Against Women
(OVW), designed to provide a criminal justice and survivor services
response respectively, both include language to require meaningful
collaboration as well as funding to state sexual assault coalitions. We
suggest following the success of these grant programs to also ensure
the meaningful, funded involvement of state sexual assault coalitions
in the prevention of sexual violence.
We recommend the following report language:
``The Committee believes significant involvement of state sexual
assault coalitions and underserved communities is critical to
ensure rape prevention education dollars are spent on the most
impactful programs. So in granting funds to states, the
Director of the National Center for Injury Prevention and
Control shall set forth procedures designed to ensure
meaningful involvement of the State or territorial sexual
assault coalitions and representatives from underserved
communities in the application for and implementation of
funding.''
Funding History: In the 2013 reauthorization of Violence Against
Women Act, Congress cut authorization for RPE from $80 to $50 million.
In FY 17, the program was funded at $44.4 million, a $5 million
increase from FY 16. In FY 18 & FY 10, RPE was funded in the omnibus at
$49.4 million. In FY 20, RPE was funded at $50.75 million. In FY 21,
RPE was funded at $51.75 million.
Please increase funding for RPE to $100 million and include report
language requiring the funded collaboration of state sexual assault
coalitions in the RPE program.
Please feel free to contact me with any additional questions at
[email protected].
[This statement was submitted by Terri Poore, Policy Director,
National Alliance to End Sexual Violence.]
______
Prepared Statement of the National Alopecia Areata Foundation
the foundation's fiscal year 2022 l-hhs appropriations recommendations
_______________________________________________________________________
--At least $46.1 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 $10 billion for the Centers for Disease Control and
Prevention (CDC).
--Please provide $5 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 FY2022 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 and continues to add patients to it. NAAF is engaging
scientists in active review of both basic and applied science in a
variety of ways, including the November 2012 Alopecia Areata Research
Summit featuring presentations from the Food and Drug Administration
(FDA) and NIAMS.
NAAF is also supporting legislation to provide coverage for cranial
prosthetics under Medicare. This bill will grant increased access to
cranial prosthetics and therapies for patients with alopecia areata and
other forms of medical hair loss. Many patients living with medical
hair loss suffer from a variety of diseases, including cancer. With no
known cause or cure, alopecia areata is an autoimmune skin disease
affecting approximately 6.9 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 Jeanne Rappoport, Acting Chief
Executive
Officer, National Alopecia Areata.] Foundation.]
______
Prepared Statement of the National Association for
State Community Services Programs
As Board President of the National Association for State Community
Services Programs (NASCSP), I am pleased to submit testimony in support
of the Department of Health and Human Services' (HHS) Community
Services Block Grant (CSBG). We are seeking a Fiscal Year 2022
appropriation level of $800 million for CSBG and an increase in client
eligibility to 200% of the Federal Poverty Level. The current 200%
eligibility established under the Coronavirus Aid, Relief, and Economic
Security (CARES) Act will expire at the end of Fiscal Year 2021,
creating a steep drop-off of services for many vulnerable families
during a critical time of recovery. These funding and eligibility
levels will empower States and local communities with the resources
they need to lead the fight against poverty through innovative,
effective, and locally tailored anti-poverty programs that help
individuals, families, and communities achieve economic security.
NASCSP is the member organization representing the State CSBG
Directors in all 50 states, the District of Columbia, and three U.S.
territories on issues related to CSBG and economic opportunity. NASCSP
provides training and technical assistance to empower State Offices in
implementing program management best practices and in developing
evidence-based policy. The State Offices represented by our
organization would like to thank the members of this committee for
their support of CSBG over the years, particularly for the supplemental
funding through the CARES Act and the increase to CSBG in the FY 2021
Labor-HHS Bill.
CSBG is a model example of a successful Federal-State-Local
partnership, a fact I can personally attest to having worked for more
than 15 years in the Arkansas State CSBG office. I worked closely with
the local Community Action Agencies and with federal OCS and ACF staff.
The CSBG network leverages federal and non-federal funds to support a
range of essential services and activities that improve the lives and
communities of Americans. These activities are incredibly important to
vulnerable individuals and families, especially during times of crisis.
CSBG is in every state and county, from the most urban counties to the
most rural ones, where CSBG furthers the critical goals of economic
security, social mobility, and racial justice. I will highlight three
main points in my testimony:
1. The structure of CSBG empowers States and local communities to
take the lead on poverty, giving States wide discretion to tailor
funding to their unique economic and social conditions.
2. CSBG creates impact in communities across the country by
leveraging additional private, local, state, and federal investments to
fight poverty, serving as the national human services infrastructure by
weaving together and coordinating private and public antipoverty
efforts.
3. The robust local, state, and federal accountability measures of
the CSBG Performance Management Framework are uniquely comprehensive
when compared to other federal programs, preventing service duplication
and fostering continuous improvement.
Structure
Proponents of state and local anti-poverty efforts often highlight
their ability to tailor services, asserting that state and local
leaders are best equipped to tackle the challenges facing their
communities. CSBG is a block grant administered and managed by states,
who administer and distribute funds to a nationwide network of more
than 1,000 local CSBG Eligible Entities, also known as Community Action
Agencies or CAAs. The CSBG network forms the bedrock of the human
services infrastructure that uplifts urban, rural, and suburban
communities across the United States. In some rural counties, the CAA
is the only human services organization addressing poverty and
uplifting low-income families in the community.
State offices distribute funds to Community Action Agencies, who
utilize CSBG funds to address their specific local needs, often in one
or more of these core domains: employment, education and cognitive
development, income, infrastructure and asset building, housing, health
and social behavioral development, and civic engagement and community
involvement. The CSBG Act requires that these services are shaped by a
community needs assessment performed at least every three years,
ensuring programs are tailored and responsive to unique community
needs, rather than a one-size-fits-all solution. The needs assessment
prevents service duplication and incorporates community feedback in the
strategic planning process.
Furthermore, the CSBG Act requires at least one-third of a
Community Action Agency's board to be composed of people with low-
incomes or their representatives, ensuring that local needs and
viewpoints are accurately reflected in organizational priorities. In
addition to low-income representation, Community Action boards are also
comprised of local elected officials or their representatives and
community stakeholders including local businesses, other assistance
organizations, professional groups, and community organizations. This
unique tripartite structure assures the needs of a community are
identified and met with the available resources necessary to maximize
outcomes and impact. The tripartite structure of Community Action
boards calls on all sectors of society to join in the shared fight
against poverty.
State Offices are charged with providing the oversight and support
necessary for effective administration of CSBG at the local and state
levels. States provide training and technical assistance to build the
capacity of local CAAs; ensure compliance with federal and state
requirements; and serve as important partners in the development of
statewide linkages and coordination to combat state causes and
conditions of poverty. The structure of CSBG empowers states and locals
to work collaboratively, maximizing impact for America's communities.
Impact
CSBG is a positive federal investment in a national system to
address poverty that produces concrete results. Federal CSBG dollars
are used to build, coordinate, support, and strengthen anti-poverty
infrastructure across our communities. In Fiscal Year 2018,\1\ for
every $1 of CSBG, CAAs leveraged $8.27 from non-federal sources.
Leveraging funds allowed CAAs to expand highly successful and impactful
programs. Including all federal sources, non-federal sources, and
volunteer hours valued at the federal minimum wage, the CSBG Network
leveraged $21.97 of non-CSBG dollars per $1 of CSBG. Without CSBG, many
rural communities across America would not be able to implement
critical programs that address poverty for low-income families and
their communities. The CSBG network served more than 10.2 million
people with low incomes in Fiscal Year 2018. A robust appropriation
will expand impact and foster innovation within the network Below is a
snapshot of some quantitative impacts of CSBG:
---------------------------------------------------------------------------
\1\ FY 2018 data is the latest publicly available from the Office
of Community Services (OCS) within the Department of Health and Human
Services (HHS).
---------------------------------------------------------------------------
--915,230 households improved their energy efficiency and/or energy
burden in their homes.
--594,718 low-income seniors (65+) achieved or maintained an
independent living situation.
--253,422 children and youth who are achieving at a basic grade level
(academic, social and other school success skills.
--78,713 adults who improved their education levels.
--55,684 unemployed adults who obtained employment up to a living
wage.
--18,090 unemployed adults who obtained employment with a living wage
or higher.
Looking beyond the data, we see that the CSBG Network is delivering
innovative, comprehensive, and effective programs across the country
that uplift individuals, families, and their communities:
--Disaster Response and Recovery in Oregon: In September of 2020,
Oregon residents in Douglas and Josephine counties already
experiencing a surge in COVID-19 cases were faced with the
additional threat of unprecedented wildfires. Evacuating
families struggled to find adequate shelter and consistent
access to food as the fires raged across multiple impacted
counties. Already familiar with serving local low-income
communities, the United Community Action Network (UCAN)
immediately began providing disaster relief. UCAN partnered
with FEMA, local public health departments, and emergency
response centers to help homeless or unsheltered individuals
and families find safety. Unable to cook while evacuating,
families utilizing food assistance relied on expensive prepared
meals which quickly drained their resources. Despite the
extreme circumstances, UCAN continued to provide food, hygiene
products, and social services wherever space was available,
including parking lots and outside gas stations. While the
wildfires stoked confusion and separated families, UCAN
connected those who were displaced and supplied cellphones so
those affected could contact loved ones. UCAN was instrumental
in organizing the emergency response, providing critical
resources, and reconnecting those separated by disaster.
--Vaccination Coordination & Education in Wisconsin: In coordination
with Wisconsin's Vaccination Task Force, the Wisconsin
Department of Children and Families and the Wisconsin Community
Action Program Association (WISCAP) are training case managers
to help Wisconsin residents to navigate the COVID-19
vaccination process. Trainings cover vaccine scheduling through
the 2-1-1 Wisconsin phone service, a framework for discussing
vaccine confidence, and a review of wrap-around services
available to compliment vaccination. Through this coordination,
Wisconsin is leveraging the 2-1-1 service as a referral source
for hyper-local, trusted community member-driven vaccination
education. Wisconsin's CSBG network also applied for a COVID-19
Outreach Grant to better assist BIPOC and rural, low-income
people with vaccine hesitance or barriers to access like
transportation. This coordinated effort helped all programs
leverage vaccine rollout funding to create a broader reach
within local communities, increase access to vaccines, and
ultimately save lives.
--Flexible & Bundled Services in Michigan: Michigan's Bureau of
Community Action and Economic Opportunity (BCAEO) began
organized discussions around new services as soon as the CARES
Act was first introduced. Working regionally with local CAAs as
well as with Governor Whitmer's taskforce, BCAEO developed
contracts and procedures to expand services as soon as CARES
funding was available. Expanding their nutrition programs,
local agencies created online grocery stores so families with
medical, religious, or cultural dietary restrictions could
choose foods for delivery. CAAs also delivered quarantine-
boxes, packages of food and hygiene supplies that allowed
residents to shelter in place before making long-term
preparations. Agencies partnered with struggling local farmers
to provide fresh produce while also fully retaining their staff
during lockdowns by moving them to food warehouse & delivery
positions. At the same time, Michigan CAAs utilized
supplemental funding to provide more than 2,200 people with
internet-connected devices to access remote education,
employment opportunities, telehealth, and other critical online
resources.
Accountability
CSBG is bolstered by a Performance Management Framework to ensure
accountability at all levels of the network. This federally established
Performance Management Framework includes state and federal
accountability measures, organizational standards for Community Action
Agencies, and a Results Oriented Management and Accountability (ROMA)
system. Under the Performance Management Framework, CSBG state offices
gather and document outcomes for the CSBG Annual Report. Within this
reporting mechanism, National Performance Indicators are used across
the network to track and manage progress, empowering CAAs have the data
they need to improve services and innovate delivery. The ROMA system
engages local communities to strengthen their impact and achieve robust
results through continuous learning, improvement, and innovation.
Furthermore, CSBG State Offices monitor local agency performance and
adherence to organizational standards, providing training and technical
assistance to ensure continuously high-quality delivery of programs and
services.
In closing, we ask the committee to fund CSBG at no less than $800
million for FY 2022 and to increase client eligibility to 200% of the
Federal Poverty Level, ensuring that this nationwide network with a
nearly 60-year record of success continues to positively impact the
lives of vulnerable Americans. The structure of CSBG empowers States
and local agencies to address poverty in their communities, while
prioritizing the voices of people with low incomes in determining
solutions. CSBG is committed to the comprehensive accountability
mechanisms of the Performance Management Framework, ensuring effective
and responsible stewardship of funds at the Federal, State, and local
level. CSBG is producing tangible results, serving millions of
vulnerable Americans each year and empowering communities, families,
and individuals to achieve economic security, social mobility, and
racial justice. NASCSP looks forward to working with Committee members
to ensure CSBG continues to help families achieve these outcomes,
strengthening our communities and providing our most vulnerable
neighbors with security, dignity, and justice. Thank you.
Respectfully submitted.
[This statement was submitted by Beverly Buchanan, Board President,
National Association for State Community Services Programs.]
______
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 $89 million, the
level included in the President's FY22 budget request, for the DD
Councils within the Administration for Community Living (ACL) in the
Labor-HHS-Education appropriations bill for Fiscal Year (FY) 2022. We
also respectfully request that the following report language be
included in the Fiscal Year 2022 Labor, Health and Human Services,
Education Appropriations bill:
Technical Assistance.--The Committee provides not less than
$700,000 for technical assistance and training for the State
Councils on Developmental Disabilities. Such technical
assistance should be provided by an organization with
longstanding experience providing technical assistance to the
national network of state developmental disabilities councils
or similar Developmental Assistance and Bill of Rights Act
national programs. In addition, the agreement encourages ACL to
consult with the appropriate Developmental Disabilities Act
stakeholders prior to announcing opportunities for new
technical assistance projects and to notify the Committees
prior to releasing new funding opportunity announcements,
grants, or contract awards with technical assistance funding.
Funding for the DD Councils has obtained broad bicameral support
from members of Congress. This funding request also has broad support
from the disability community. The Consortium for Citizens with
Disabilities, the largest coalition of national organizations working
together to advocate for people with disabilities, submitted a support
letter to this committee dated April 26, 2021.
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.'' \1\ 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 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.
---------------------------------------------------------------------------
\1\ 42 U.S.C. 15001(b).
---------------------------------------------------------------------------
The request for an increase in funding for FY2022 is informed by
the tragedy and lessons learned from last year's COVID-19 pandemic and
the spotlight it placed on circumstances of everyday living for people
living with intellectual or developmental disabilities (I/DD) that
present obstacles. For decades since the passage of the DD Act and
later the Americans with Disabilities Act, the whispered concerns about
the dangers of living with I/DD in isolation and stripped of critical
supports were realized when the pandemic hit. Several studies showed a
link between having an I/DD and a greater risk of contracting and dying
from COVID-19, with one study finding having an intellectual disability
was the strongest independent risk factor for presenting with a Covid-
19 diagnosis and the strongest independent risk factor other than age
for Covid-19 mortality. The Centers for Disease Control and Prevention
identified social factors which increased the risk of COVID-19
transmission including: relying on direct support workers and families,
difficulties understanding information and preventative measures, and
difficulty communicating symptoms of the illness. The circumstances of
simply living with I/DD means that people are struggling to simply
live, not only during pandemics but every day of their lives. For
example, it is true that relying on direct support workers and families
is an obstacle to surviving COVID, but it is also an obstacle to
obtaining employment, accessing transportation, and most activities
people without disabilities take for granted.
The DD Councils support innovative programs to promote self-
determination and create systemic pathways to independent living to
keep people with I/DD safe during public health emergencies and to help
them live their fullest lives in the community long after 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.
DD Councils promote community living in the states through narrowly
tailored, state-specific initiatives for emerging issues. Every DD
Council pivoted during COVID-19 to meet immediate and critical needs.
For example, in response to the hardship that COVID-19 has placed on
people's ability to stay connected and engaged, the Washington State
Developmental Disability Council invested in grants including:
providing laptops and prepaid data cards for internet access for those
without technology; promoting healthy living during COVID; and
combating social isolation. At the same time, their longer-term plans
were implemented. For example, as part of their five-year plan, the
Missouri Developmental Disabilities Council identified affordable and
accessible housing is an essential need for people with I/DD. The
council supported community initiatives that resulted in persons with
developmental disabilities having opportunities for housing including
the Missouri Inclusive Housing Development Corporation (MoHousing).
Thank you for consideration of our request.
______
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 this nation's nearly 4,000 treatment court
programs and the 150,000 people the programs will connect to lifesaving
addiction and mental health treatment this year alone. Given the
overlapping crises of substance use and the COVID-19 pandemic, 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 2022.
I serve as a superior court judge in Lewis County, Washington,
where, for the entirety of my tenure as judge, I have presided over our
county's treatment court programs, including drug courts. I have never
participated in a more effective approach to promoting public health
while also remaining steadfast to the promise of the justice system to
protect public safety. Strong empirical evidence shows time after time
that treatment courts not only reduce crime, but also save lives and
families by connecting participants to evidence-based treatment
services and recovery support.
Participants like Brant. Before coming to our program, he spent
much of his life cycling in and out of the justice system because of an
addiction that began in his early twenties. By the time he came to our
program, he had been to jail seven times, with more on the horizon
unless something changed. Our treatment court program provided the
accountability and treatment that Brant needed to change.
In our program, Brant, like the rest of our participants, was
assessed and given an individualized treatment plan designed by
substance use treatment professionals using evidence-based methods,
including medication-assisted treatment where appropriate. Together, in
concert with the multidisciplinary treatment court team who ensured
Brant received the services and accountability he needed to succeed, we
set a goal of recovery for him, not another costly and ineffective
stint behind bars.
Today, Brant is not only living that goal, he's doing what he can
to help others achieve the same. He works for an organization that
conducts outreach to vulnerable populations with substance use
disorders and helps them get their lives back on track, with a special
focus on homeless veterans. He also serves as 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.
I have worked in treatment courts since 2004, when I helped launch
Lewis County's adult drug court as chief criminal deputy in the
prosecutor's office. Subsequently, as the chief criminal deputy of
neighboring Thurston County, I supervised our adult drug court, mental
health court, and veterans court units. Since then, I have watched many
of the most helpless individuals in our justice system overcome their
substance use or mental health disorder, regained their lives, and
became productive citizens. Most go on to raise families, begin growing
careers, and help others in the similar difficult positions they once
found themselves in. Without hesitation, I credit the treatment court
model for the health and safety of these individuals.
Lewis County is a rural, relatively quiet part of southwestern
Washington. But we are not immune from the grips of the twin crises
currently gripping the nation from coast to coast: the substance use
epidemic and the ongoing effects of COVID-19, including isolation and
economic devastation. 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.
With overwhelming empirical evidence showing their effectiveness,
it is easy to see that treatment court programs across the country
merit continued funding. The Government Accountability Office finds the
drug court model reduces crime by up to 58%. 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, financial stability, and reduced foster care placements.
Brant is not alone in his success. Treatment courts in this country
have connected 1.5 million people who have lifesaving 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.
Continued 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 we know there are many
more 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 2022, so treatment courts in Washington and beyond can
continue providing lifesaving substance use treatment services.
[This statement was submitted by Hon. Andrew Toynbee, Judge,
Superior Court of Lewis County, Washington, Chehalis, Washington.]
______
Prepared Statement of the National Association of
Emergency Medical Technicians
Thank you, Chairwoman Murray, Ranking Member Blunt, and
distinguished members of the Subcommittee. My name is Bruce Evans, and
I am the President of the National Association of Emergency Medical
Technicians (NAEMT). I am also a fire chief leading a fire-based EMS
organization in a super rural area of Southwest Colorado--12,000
residents in 264 square miles.
Founded in 1975 and over 70,000 members strong, NAEMT represents
our nation's frontline EMS practitioners, who provide critical,
lifesaving services to communities nationwide, especially in rural,
frontier, and other hard-to-reach areas. On behalf of our organization,
thank you for your ongoing support of EMS professionals. NAEMT would
like to offer our views on the Subcommittee's FY 2022 bill. At the
outset, we write to ask the subcommittee to provide robust funding for
the SIREN Rural EMS Equipment and Training Assistance (REMSTEA) program
within the Department of Health and Human Services' (HHS) Substance
Abuse and Mental Health Services Administration (SAMHSA).
This testimony is submitted just a few weeks after the 46th Annual
EMS Week, which occurred from May 16--May 22, 2021. The goal of EMS
Week is to thank paramedics, EMTs, and the entire EMS workforce for
their services and sacrifices. However, EMS professionals do not just
want a pat on the back--like the rest of our members, I am writing to
continue to raise public awareness about the critical funding shortfall
of EMS in the communities we serve. This urgent request aligns with the
spirit of EMS Week.
Passed in the 2018 Farm Bill, the SIREN/REMSTEA grant program
supports rural public and nonprofit EMS agencies in their efforts to
complete their mandate to provide critical emergency medical care to
all of the residents in the communities they serve. The grants help
rural EMS agencies train and retain staff and purchase equipment, among
filling other needs. Community demands keep growing: each year, fire
departments and EMS agencies respond to more than 20 million calls for
emergency services. While the COVID-19 pandemic exacerbated the plight
of these agencies, EMS practitioners and agencies were facing severe
challenges before the virus' outbreak. This can be attributed, in part,
to greater distances between health care facilities and low
reimbursement rates. The most pressing impact is the decline of
available medical care in rural communities, which has heightened the
need for already-stretched EMS agencies to perform these lifesaving
services. Again, this foreboding and bleak landscape existed even
before the onset of the pandemic, which has strained the social safety
net that EMS professionals provide.
COVID-19 made an already growing problem much worse. In FY2020 and
FY2021, your Committee provided $5 million and $5.5 million for SIREN
grants, respectively. However, the program requires a substantial
increase in funds to make sure our personnel have the equipment and
training they need. Social distancing and ``stay-at-home'' protocols
because of the pandemic complicated income streams for these agencies.
Many rural EMS agencies rely heavily on community fundraising efforts,
such as bingo, raffles, and community barbeques. At the same time,
support from localities whose tax revenue base has dramatically
declined, further hindering EMS agencies' ability to fill their
coffers. Beyond smaller revenue streams, costs have gone up, especially
as EMS agencies have been paying higher prices for personal protection
equipment (PPE) throughout the pandemic.
Rural EMS organizations, like mine in Colorado, have
disproportionately suffered from shrinking revenue streams and
increased demand before the pandemic and now, especially as it relates
to synthetic opioid overdoses, which have skyrocketed and do not seem
to be slowing down. Ambulance crews that support the most far-flung
areas of our country are running out of money and personnel. Because of
the especially demanding work that rural EMS organizations shoulder,
they are struggling to stay afloat at a much higher rate than their
more urban counterparts. This challenge is not limited to one region of
the country; rather, rural EMS organizations across the board are more
likely to shut their doors, leaving their residents without reliable
access to local ambulance service. Ultimately, without the support this
grant program provides, many more local EMS operations will likely have
to close their doors.
The result is, unfortunately, predictable: increasing workforce
shortages as EMS personnel become increasingly burnt out, face
shrinking compensation, and are constantly exposed to unpredictable and
dangerous environments. In short, more money is needed to bring more
people aboard to ensure that our professionals are provided a safe,
healthy, and respectful work environment, and that their EMS agency can
effectively serve their communities. The enhanced funding for the
SIREN/REMSTEA program will go to good use, especially as our country
and economy recover from the economic and health care crisis brought on
by the pandemic.
Beyond the demonstrated need, EMS personnel made good use of the
funds allocated under the FY2020 and FY2021 spending bills. For FY2020,
SAMHSA awarded REMSTEA grants ranging from $92,000 to $200,000 to
approximately 27 EMS agencies across the country for recruitment and
training purposes. In December 2020, SAMHSA announced the potential to
grant awards to another 27 rural EMS applicants. Rural EMS agencies are
in dire need for additional support--we can assure you that our
organization's members will not leave money allocated by Congress on
the table.
On behalf of our 70,000 members who live and work in every state
across our country, thank you again for supporting our brave men and
women who provide important roles in the health care ecosystem. SIREN/
REMSTEA grants will certainly help them do their jobs to their fullest
ability.
[This statement was submitted by Bruce Evans, MPA, NRP, CFO, SPO,
President, National Association of Emergency Medical Technicians.]
______
Prepared Statement of the National Association of
Nutrition and Aging Services Programs
Our ask for FY 2022 is for a minimum total of $1.9 billion for the
three Older Americans Act (OAA) Title III-C Nutrition Programs, divided
approximately as follows:
--Congregate Nutrition Services (Title III C-1)--$965 million
--Home-Delivered Nutrition Services (Title III C-2)--$726 million
--Nutrition Services Incentive Program (NSIP) (Title III)--$211
million
We can more than justify the need for this funding level. It is
important to understand the reality of how the pandemic impacted these
programs. The OAA nutrition programs endured a wholescale conversion of
the operations because of the COVID-19 pandemic. Before the pandemic,
according to the Administration for Community Living's AGID database,
more than twice as many older adults were served in the congregate
program as in the home-delivered nutrition program. The pandemic caused
the transition of almost all congregate program participants to the
home-delivered nutrition program.
This conversion resulted in programs encountering immediate
increases in costs for food, transportation and personnel, since many
relied on older volunteers who were unable to continue their work.
Price increases have been particularly felt in those transportation
costs, including gasoline prices. Programs went from serving hundreds
of participants per day in one location to getting meals to hundreds of
individual locations. Gasoline prices have shown a 49.6 percent
increase over the last year, including a 9.1 percent increase between
just April and May.
Further, in addition to providing additional funding during the
pandemic, Congress also has approved some needed flexibilities to allow
these programs to seamlessly convert. The most impactful of these was
an updated definition of ``homebound,'' allowing any older adult forced
to shelter in place to be eligible for a home-delivered meal,
overriding any previous state restrictions. This has led to tremendous
increases in demand. In fact, a survey conducted by Meals on Wheels
America showed an average of 95 percent increase in demand in the early
months of the pandemic, including 80 percent of surveyed programs
reporting doubling of requests for home-delivered meals. While demand
has stabilized to some extent, it remains at a national average of a 60
percent increase over pre-pandemic levels. Local programs also reported
that operating costs will likely remain high for the foreseeable
future, and nine in 10 home-delivered meals programs reported continued
unmet need for home-delivered meals in their community. Nearly a third
of these programs said they would need to nearly double or more than
double their home-delivered efforts in the future to serve this unmet
need.
This is perhaps the greatest justification for this funding. We do
not want to see older adults crashing into and falling over this
``cliff'' of funding running out while the need for service continues.
We do not want to have our dedicated personnel in the field be forced
to remove older adults in need from their programs, knowing what the
health consequences would be.
This funding request is premised on the fact that while the
pandemic may be easing, it is not over by any means. Without question,
the emergency funding provided to this nutrition network has been used.
These funds we request will absolutely also be used.
It should also be noted that nutrition programs were creative and
innovative in their use of emergency funds, establishing partnerships
with restaurants, food delivery services, drop-ship services and the
like in order to stretch their funding as far as it would go. But
public-private partnerships do involve resources from both sides.
Supporting our funding request for FY 2022 will allow these innovations
and partnerships to continue and expand.
Another justification for this funding request must be what it can
do to help alleviate the three evils of hunger, food insecurity, and
malnutrition in older adults. We have documented information on major
increases in food insecurity during the pandemic. We were also acutely
aware that even before the pandemic, one in two older adults were at
risk of or were already malnourished. The provision of a daily meal to
an older adult in a homebound setting can often be the main source of
their nutrition for that given day. Said another way, if you remove
that meal, that older adult simply may not eat at all.
A continued investment in the OAA nutrition programs allows us an
important intervention for those older adults who are socially
isolated. Funding provided during the pandemic went well beyond just
providing a meal. Our nutrition network responded by developing
critically important programs to maintain contact with older adults who
suddenly found themselves not being able to have their normal daily
socialization at their congregate program. They provided telephone
reassurance calls as well as higher-tech approaches to maintaining
contact such as virtual book clubs, exercise classes, and nutrition
education. These services, like the food provided, need to be continued
in the year ahead.
We were also especially pleased that the American Rescue Plan Act
included funding to allow the aging network to assist in the effort to
get older adults vaccinated. At the time FY 2022 begins, we will be
entering flu and pneumonia season. We need to ensure that we continue
to provide the aging network with resources to aid older adults in
getting the vaccines they need to prevent these illnesses.
In addition, we are all striving for the day when congregate
nutrition sites, senior centers and adult day centers that provide
meals can reopen. Of course, this can only be done with proper regard
for health and safety rules and ordinances. NANASP and our colleagues
at the National Council on Aging are surveying our members to find out
what costs facilities will incur both to open and remain open. The
results are concerning--many programs are reporting $15,000 in costs or
more per facility--and these expected costs go outside of most budgets.
We hope that this funding can be significant and flexible enough to
allow some to be used to facilitate reopening and/or that funding for
these facilities be included in any major infrastructure bill Congress
may produce with the President.
Finally, we implore this Subcommittee to think about what has
unfolded in the past year with respect to different funding sources.
Aging network programs must report their spending of regular FY 2021
funding as well as four streams of emergency funding and expected FY
2022 funding. We strongly request that you communicate through this
legislation that while accurate reporting is necessary and important,
steps should be taken by the Administration to ensure that the
reporting process is as simplified as possible to ensure that programs
are not spending much of their limited staff hours and resources on
this onerous task.
Next year, this wonderful Older Americans Act nutrition program
will celebrate its 50th anniversary. Without question, its 49th year
has likely been its toughest. Yet the fact that the OAA nutrition
program went seamlessly through an unexpected full-scale conversion
speaks volumes about the dedication of nutrition service providers, who
deserve our sincere thanks. They pivoted and persevered despite their
personal struggles and fears about the virus. While not technically
first responders, they were first to respond to one critical need for
older adults--nutrition. In short, they always have the best interest
of the older adults they serve front and center, as has this
Subcommittee. We ask for you to keep this interest in mind again in
this incredibly challenging time so we can be prepared for the final
phases of the pandemic and all the related downstream issues there may
be.
In closing, in the words of a program director from a recently-
published New York Times article on OAA nutrition programs:
``[Program administrators] worry that if Congress doesn't sustain
this higher level of appropriations, the relief money will be
spent and waiting lists will reappear.
`There's going to be a cliff,' Mary Beals-Luedtka [director of the
area agency on aging serving northern Arizona] said. `What's
going to happen next time? I don't want to have to call people
and say, `We're done with you now.' These are our
grandparents.' ''
______
Prepared Statement of the National Association of
Secondary School Principals
The National Association of Secondary School Principals (NASSP)
appreciates the opportunity to submit the following testimony for the
record to the Senate Appropriations Subcommittee on Labor, Health and
Human Services, Education, and Related Agencies. As the premier
national organization and voice for middle level and high school
principals, assistant principals, and other school leaders, NASSP seeks
to transform education through school leadership, recognizing that the
fulfillment of each student's potential relies on great leaders in
every school committed to the success of each student.
As you develop the fiscal year (FY) 2022 appropriations bill for
the U.S. Departments of Labor, Health and Human Services, Education,
and Related Agencies, NASSP encourages you to help every American
student achieve success and be ready for college, career, and life by
prioritizing funding for Supporting Effective Instruction State Grants,
the School Leader Recruitment and Support program, the Literacy for
All, Results for the Nation (LEARN) program, and Student Support and
Academic Enrichment grants.
NASSP urges the subcommittee to allocate $3.00 billion for the
Supporting Effective Instruction State Grants program, Title II, Part A
(Title II-A) of the Every Student Succeeds Act (ESSA). This program
provides states and school districts with formula funding that ensures
that educators, principals, and school leaders receive the professional
learning and leadership skills needed to support every student.
Research continues to show that Title II-A's investments in
educators pays significant dividends in terms of improving educational
practice and increasing student achievement. School districts use Title
II-A funding to implement ESSA's rigorous definition of professional
development that embodies the important transition from scattershot,
one-off professional development workshops and sessions to
collaborative, ongoing, job-embedded professional learning such as
coaching, mentoring, and professional learning communities (PLCs).
Research supports the positive effect of the kinds of professional
development defined in ESSA. For example, key studies show that
coaching helps teachers improve their practice faster. A 2018 meta-
analysis, which examined 60 rigorous studies of coaching, found large
positive effects of coaching on teachers' instructional practices.
Across 43 studies, researchers found that coaching accelerates the
growth that typically occurs as one moves from novice to veteran
status. Additionally, multiple researchers have documented that
teachers who collaborate in PLCs to continuously improve their practice
and their students' learning experiences have a measurable positive
impact in schools. A 2009 study that took place in New York City
documented student achievement gains across grade levels when teachers
engaged in purposeful, content-focused interactions.
Title II-A's support for principal and school leader professional
learning is also critical, as research shows a strong correlation
between high-quality principals and student achievement and teacher
retention. A March 2021 Wallace Foundation paper stated that a review
of two decades of evidence--including six quantitative, longitudinal
studies involving 22,000 principals--found that ``principals have large
effects on student learning, comparable even to the effects of
individual teachers. A separate 2016 review of 18 studies meeting
ESSA's Tiers I-III evidence standards concluded that ``school
leadership can be a powerful driver of improved education outcomes.''
This research buttresses earlier studies that concluded that principals
are second only to teachers as the most important school-level
determinant of student achievement. Other research suggests that
schools led by high-quality principals have lower teacher turnover
rates.
While the federal government's investment in Title II-A has proven
to be much needed and welcome, the COVID-19 pandemic laid bare the need
for higher levels of support for our nation's educators. A significant
increase to $3.00 billion for Title II-A will provide schools and
districts with crucial funds to address new and existing challenges
induced or exacerbated by the pandemic. A larger investment in Title
II-A will help accelerate student learning, curb teacher and principal
shortages by recruiting new individuals into the educator workforce,
provide supports to keep educators in the profession, keep class sizes
low, and provide mental health and wellness support to our nation's
educators as they reenter classrooms full time for the upcoming school
year.
NASSP urges the subcommittee to support our nation's school leaders
through renewed funding for the School Leader Recruitment and Support
Program (SLRSP). Authorized under ESSA and funded at $14.5 million in
FY 2017, SLRSP is the only federal program specifically focused on
investing in evidence-based, locally-driven strategies to strengthen
school leadership in high-need schools. Unfortunately, this program has
received no funding in the last several fiscal years. Recently though,
President Joe Biden released his FY 2022 budget, where he called for
the program to receive $30 million, a number that NASSP requests this
committee support.
SLRSP empowers states and school districts, individually or in
partnership with nonprofits or institutions of higher education, to
accelerate the recruitment, preparation, support, and retention of
dynamic school leaders who have a measurable, positive effect on
student achievement in high-need schools. Through this program,
aspiring principals gain access to high-quality preparation programs,
sitting principals receive critical professional development supports,
and thousands of teachers--along with hundreds of thousands of
students--have the opportunity to work and learn in schools where
school leaders have the tools to help them maximize their potential.
Funding SLRSP at $30 million will allow proven programs to train more
principals to lead during this critical time, provide additional
support to current principals, and ultimately lead to better support
for teachers and students.
As we continue working with states, districts, and schools on how
best to serve students and teachers as schools begin close out the
current school year and look toward the next, it is important we
recognize that investments in school leadership are critical to
addressing learning loss and meeting students' social and emotional
learning needs. Additionally, investments in leadership are extremely
cost effective when you consider that investing in one principal is
actually an investment in the 25 teachers and 500 students they, on
average, support. A recent report from The Wallace Foundation states,
``Principals really matter. Indeed, it is difficult to envision an
investment with a higher ceiling on its potential return than a
successful effort to improve principal leadership.''
While investments in school leadership will have a significant
impact on addressing lost instructional time for students, additional
investments in critical programs will also be necessary to help student
achievement. That is why NASSP also calls for the subcommittee to
provide $500 million for the LEARN program, which builds on the success
of the Striving Readers Comprehensive Literacy (SRCL) program.
Research has already started to highlight the pandemic's impact on
students' literacy skills. McKinsey & Company found that students
taking formative assessments in 2020 learned only 87% of the reading
that grade-level peers would typically have learned by the fall.
Students lost the equivalent of one-and-a-half months of learning in
reading on average, but in schools that predominantly serve students of
color, the learning loss was especially acute. The LEARN program builds
on the success of the SRCL program where states implementing
comprehensive literacy plans have seen significant improvements in
English language arts achievement in districts and schools serving
disadvantaged students.
Eleven states (Georgia, Kansas, Kentucky, Louisiana, Maryland,
Minnesota, Montana, North Dakota, New Mexico, Ohio, and Oklahoma), the
Bureau of Indian Education, and four territories received SRCL grants
in 2017, and an additional 13 states (Alaska, Arkansas, California,
Georgia, Hawaii, Kentucky, Louisiana, Minnesota, New Mexico, Ohio,
Rhode Island, and South Dakota) received grants in 2019 under the now-
named Comprehensive Literacy State Development program. With these
grants, states are able to support high-quality professional
development for teachers, principals, and specialized instructional
support personnel to improve literacy instruction for struggling
readers and writers, including English-language learners and students
with disabilities.
The literacy skills our students need today are much more complex
than they were 50 years ago. Creating a globally competent workforce
depends on students using their reading and writing skills to develop
important abilities in areas such as math, science, technology, and
manufacturing. Yet despite the fundamental importance of reading and
writing, only 35% of fourth-grade students and 34% of eighth-grade
students performed at or above the proficient level in the reading
assessment of the National Assessment of Educational Progress--the
Nation's Report Card.
Of the more than 523,000 students who leave U.S. high schools each
year without a diploma, many have low literacy skills. Research clearly
demonstrates that a high-quality, literacy-rich environment beginning
in early childhood is one of the most important factors in determining
school readiness and success, high school graduation, college access
and success, and workforce readiness.
A strong federal commitment to literacy is imperative. LEARN
supports states in a comprehensive, systemic approach to strengthen
evidenced-based literacy and early literacy instruction for children
from early learning through high school and supports district capacity
to accelerate reading and writing achievement for all students.
Lastly, NASSP urges the subcommittee to allocate $2.00 billion for
the Student Support and Academic Enrichment (SSAE) grant program
authorized by Title IV-A of ESSA for FY 2022. This would be a $780
million increase over the FY 2021 enacted level. Title IV-A is a
flexible grant that supports state and district efforts to: 1) support
safe and healthy students by providing comprehensive mental and
behavioral health services and implementing violence prevention
programs, trauma informed care, school safety trainings, and other
evidenced-based initiatives; 2) increase student access to a well-
rounded education, such as STEM, computer science and accelerated
learning courses, career and technical education, physical education,
music, the arts, foreign languages, college and career counseling,
effective school library programs, and social and emotional learning;
and 3) provide students with access to technology and digital learning
materials and educators with professional development and coaching
opportunities necessary to effectively use those resources.
Over the last four fiscal years, on a bipartisan basis, Congress
has provided a $4 billion investment for Title IV-A, which has allowed
districts to meaningfully invest in programs that provide direct
educational services and equitable supports to students. Its
flexibility has allowed districts to provide funding for critical
programs that support educators, school leaders, and students. As
district leaders continue to leverage the flexibility of the SSAE
grants, they are eager to plan for the continuance and/or expansion of
existing programs and services, and to create new programs.
To address unprecedented interruptions to learning caused by COVID-
19, we call on Congress now to go beyond what was authorized in ESSA by
providing $2 billion for the SSAE block grant. This will allow
additional school districts, especially in rural areas, to make
investments in not just one, but all three areas that this grant
supports. Right now--more than ever--districts need the continued
investments in the Title IV-A program. This pandemic has made clear
that districts face a wide range of unique challenges, whether it's
ensuring all children have access to technology for remote or blended
learning or the ability to provide mental health supports from afar. As
school systems prepare for the return to classrooms next school year,
they will need the flexibility of Title IV-A funds to provide social
and emotional learning programs, engaging well-rounded classes like
music and physical education, and active learning opportunities enabled
through technology.
NASSP thanks you again for the opportunity to share these thoughts
and information with you, and also thanks you for your continued work
to support our nation's students and educators. To discuss this
testimony further or if you have any questions, please contact NASSP's
senior director of federal engagement and outreach, Zach Scott, at
[email protected].
______
Prepared Statement of the 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 the fiscal year 2022 appropriations for federal
programs that impact approximately 2.87 million Americans who are
treated annually in emergency department visits and hospitals for a
traumatic brain injury (CDC, 2014). To address their needs, NASHIA is
requesting increased funding for programs authorized by the Traumatic
Brain Injury (TBI) Program Reauthorization Act of 2018 and administered
by the U.S. Department of Health and Human Services' (HHS)
Administration for Community Living (ACL) and the Centers for Disease
Control and Prevention's National Center for Injury Prevention and
Control (NCIPC). 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, and which funds TBI
Model Systems and TBI research. NASHIA is requesting:
--$12 million additional funding for the ACL TBI State Partnership
Grant Program to provide funding to all states, territories and
District of Columbia;
--$6 million additional funding for the ACL TBI Protection & Advocacy
Grant Program to increase the amount of the awards; and
--$5M 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 ($1 million each),
while increasing per center support by $200,000;
--$1 million to expand TBIMIS collaborative research projects from 1
to 3; and
--$100,000 to increase funding for the National Data and Statistical
Center in order to gain information for valuable research.
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 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. As a result, states have
witnessed increased anxiety and self-isolation among individuals with
brain injury. Thus, the federal funding requested is critical to assist
states with issues that emanate from the pandemic, as well as to
address the increased number of brain injuries due to an aging
population and other factors.
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, Medicaid) and
payers (e.g., insurance, Workers' Comp, state and federal programs).
Twenty seven states are ending their grant activities. 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.
acl tbi state protection & advocacy (patbi) program
The ACL Federal Protection and Advocacy TBI (PATBI) program is a
formula grant that provides $4 million total in funding for the 57 P&As
in the United States, its territories and the Native American
Protection and Advocacy Project in order to provide: (1) information,
referrals, and advice; (2) Individual and family advocacy; (3) legal
representation; and (4) specific assistance in self-advocacy. The
requested amount will increase the amount awarded to state and PATBI
grantees.
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.
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, as a nonprofit organization, works on behalf of
states to promote partnerships and build systems to meet the needs of
individuals with TBI with the goal of all states having resources to
assist individuals with TBI to return to home, community, work and
school after sustaining a brain injury. 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
for the ACL TBI Program (state and protection & advocacy grant
programs), for the ACL NIDILRR program to expand TBI research, for 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 at [email protected], or Becky Corby, NASHIA
Government Relations at [email protected].
______
Prepared Statement of the National Association of State Long-Term Care
Ombudsman Programs
Chairman Murray and Ranking Member Blunt, I present this testimony
on behalf of the nearly 74,000 residents in Washington State's long-
term care facilities and in collaboration with the National Association
of State Long-Term Care Ombudsman Programs (NASOP). Thank you for your
past support of State Long-Term Care Ombudsman Programs (SLTCOPs) and
the at-risk individuals that they serve, particularly in the CARES Act.
As you know, our work to serve the residents of long-term care
facilities under the terrible cloud of the COVID-19 pandemic has been
extremely challenging. We are emerging from this period facing many
crises in facilities across the nation, but we are determined to
protect the rights of residents, resolve their complaints and service
problems, and work with facilities to improve the quality of care, the
roles in which we ombudsmen have been entrusted.
I submit this statement and the funding recommendations for the
Fiscal Year 2022 for SLTCOPs administered through the Administration
for Community Living, Department of Health and Human Services, to
include:
--$65 million to support our work with residents of assisted living,
board and care, and similar community-based long-term care
settings as these are less regulated and residents often need
greater advocacy;
--$70 million for our current core obligation to respond to
tremendous need, ensuring residents have regular and timely
access to our program; and
--$20 million under the Elder Justice Act for training and services
to address increasing abuse, neglect, and exploitation,
including related to staff that are part of the opioid crisis.
Let me explain why our program is requesting this funding. I will
start by letting you know why we ombudsmen are so passionate about our
work. Our mission is to protect the health, safety, welfare, and rights
of our nation's older adults and individuals with disabilities living
in nursing homes and assisted living facilities. We protect the
residents' rights to be treated as individuals with autonomy, choice,
independence, and access to quality health care. We believe that in a
just society, all people would have their needs met. LTC Ombudsmen are
paid professionals who recruit, train, and oversee teams of local
volunteers who want to give back to their communities. The advocacy we
provide is the first line of protection for thousands of elders living
in licensed long-term care facilities. Increased consistent funding is
needed for the SLTCOP to support the critical role ombudsmen play in
the care infrastructure, specifically the long-term care and community-
based care infrastructure funded in part by Medicaid and Medicare.
Two years ago, volunteers in Washington donated approximately
32,860 hours of their time and skill to resolve complaints made to the
program with a success rate of nearly 90 percent. We save the state
resources by resolving complaints at the lowest level keeping them out
of the expensive regulatory and legal systems. However, like our sister
programs across the nation, we are not able to keep up with consumer
needs and growing costs. One of the key areas of need right now is the
direct result of the covid-19 pandemic. The advocacy and protections
our programs provide are necessary to address the trauma and impact
that residents, family members, and staff have experienced during the
pandemic. Many ombudsman programs, due to the risks, have lost paid
staff and volunteers who need to be replaced.
The pandemic put all ombudsmen on high alert. The Washington State
LTCOP responded swiftly to the needs of residents and their families by
adapting our methods, and developing ways to reach into facilities that
were in ``lockdown''. We distributed nearly 70,000 post cards and notes
to long-term care residents and their families informing them about the
program, and Residents Rights. Through private donors and a grant from
Washington State, we delivered approximately 800 Amazon Fire Tablets to
adult family homes to help residents ``stay connected'' with their
family, friends, and communities. We advocated on behalf of residents
and their families through participation in multiple stakeholder
meetings, educating and informing journalists, providing testimony, and
working with our state legislature to pass meaningful legislation
(HB1218). The State LTCOP created a mental health and spiritual
counselor referral list to address the loss and grief, and the trauma
experienced by long-term care residents. We organized a new resident-
only advisory council to the State LTC Ombuds, giving voice to the
thousands of long-term care residents who were voiceless during the
pandemic. These are just a few examples of the work conducted during
the COVID-19 crisis which is not yet over.
To alleviate the effects of diminished budgets and expanding long-
term care populations, we respectfully request the following funding to
support all SLTCOPs.
First, we request $65,000,000 to support SLTCOP work with residents
of assisted living, board and care, and similar community-based long-
term care settings. While the mandate to serve residents in assisted
living facilities was added to our mission Act, there have been no
appropriations for this function. Assisted living and similar
businesses have boomed, but SLTCOP funding has not increased to meet
the demand and respond to the industry boom. We rarely are able to get
to the growing number of assisted living facilities, which depending on
the state are called board and care and other names. Nationally, for
example, while assisted living beds have grown to more than 57,000 in
the years 2013 to 2018, we have about 2,000 fewer volunteers and only
71 more paid ombudsmen over that five-year period.
Home and Community based service options continue to grow in
number, but there is no expansion in ombuds services. Increases in
long-term care residents is a key factor and challenge to providing our
cost saving advocacy services. Washington State has demonstrated
leadership by reducing Medicaid costs, while excelling in consumer
options outside of expensive nursing homes. Assisted living residents
have complex medical needs, very much like the nursing home residents
of 20 years ago. Growth in the number of assisted living facilities, in
conjunction with complex needs of consumers and diminished funding
threaten the health and wellbeing of people in our care. These
challenges hinder our ability to meet program requirements to provide
regular and timely access to all residents wanting long-term care
ombudsman services. Current funding levels preclude SLTCOPs from
quickly responding to complaints and monitoring facilities. Without our
eyes and ears in these buildings, residents are at risk of abuse,
neglect, and serious financial exploitation, and any number of
violations of their rights.
Our second request is for $70,000.000, which is needed to provide
core program funding for the program under Title VII of the Older
Americans Act. These funds must be allocated to all fifty states. In
addition to improving the quality of life and care for our family
members and neighbors in long-term care, our work saves Medicare and
Medicaid funds by avoiding costs associated with poor quality care,
unnecessary hospitalizations and expensive procedures and treatments.
Furthermore, nationally in 2019, more than 5,947 volunteers donated
their time. Ombudsman staff and volunteers investigated 198,502
complaints made by residents, relatives, friends, and volunteers.
Ombudsmen were able to resolve or partially resolve 71.5 percent--or an
ombudsman resolved nearly three out of every four complaints
investigated.
In 2018, Washington State had 3,818 long-term care facilities with
approximately 71,000 residents. Our state program includes me, and two
other full-time staff, which has not changed much since 1989.
Thankfully, we have great partnerships with other not-for-profits to
operate local ombudsman programs, extending our reach into the most
isolated of nursing home residents in our rural communities. These
partners include seven Area Agency on Aging entities and three
Community Action Programs and in total, we employ 17.51 full-time
staff. Two national studies about the effectiveness of the LTC
Ombudsman Program (the Institute of Medicine, and the Bader Report)
have recommended that best practice be to employ one full-time paid
ombudsman for every 2,000 long-term care residents or licensed beds.
Washington State falls short of that goal at having only 49 percent of
the needed paid staff.
Although we have a great team of paid and volunteer ombudsmen, our
program suffered a significant loss of volunteers during the pandemic.
We weren't able to cover every facility before the pandemic and things
are worse now. Nearly half of the facilities in our state never receive
routine visits by an ombuds, and visitations are the hallmark activity
of the Program--vital to building trust and effectiveness. We are so
busy responding to complaints that we are not able to conduct regular
outreach or build presence in all facilities. We are overwhelmed with
complaints about involuntary, and unlawful discharges, also known as,
``resident dumping'' which is harmful to residents, and costly. Long-
term care providers recognize the value and benefit of the LTC
Ombudsman program trainings, and consultation services, which often
address problems before they escalate.
Third, we request $20,000,000 to support the work of SLTCOPs under
the Elder Justice Act (EJC). This appropriation would allow states to
hire and train staff and recruit more volunteers to prevent abuse,
neglect, and exploitation of residents and investigate complaints.
However, the funds have been authorized since 2010, to date no EJC
funds have been appropriated for SLTCOPs, except for $4 million in the
Coronavirus Response and Relief Supplemental Appropriations Act of
2021. Currently, federal Older Americans Act funding comprises about a
third of the total funding required to maintain the Washington Long-
Term Care Ombudsman Program, at its current level, with the majority of
funding coming from our State General Funds.
Demand for our services is growing. The number of complex and very
troubling cases that ombudsmen investigate has been steadily
increasing. As more residents are vaccinated and facilities ``re-open''
ombudsmen are returning to in-person visits. What we see is concerning
and disturbing when it comes to poorer staffing levels and the impacts
of social isolation. In addition, there continues to be a disturbing
increase in the frequency and severity of citations for egregious
regulatory violations by long-term care providers that put residents in
immediate jeopardy of harm. Ombudsmen are needed now more than ever in
nursing homes, assisted living, and similar care facilities.
In order to improve advocacy and services available to residents,
our office and NASOP respectfully request the aforementioned funding
levels. Just think how much more we could accomplish if we had the
resources to meet the demand.
We appreciate that the Leadership Council of Aging Organizations
has written in support of these requests.
Thank you for your ongoing support.
[This statement was submitted by Patricia L. Hunter, MSW,
Washington State Long-Term Care Ombudsman.]
______
Prepared Statement of the National College Attainment Network
Dear Chair Murray and Ranking Member Blunt,
Thank you for your continued leadership in past funding cycles to
reinforce investments in the federal programs that support students in
their pursuit of higher education. Today, we write to respectfully
request that federal student aid funding be a high priority for the
Subcommittee. Without the statutory discretionary spending caps for
Fiscal Year 2022, we hope that total discretionary funding can rise to
provide strong support for our nation's higher education system and
students.
With this goal in mind for FY22, NCAN recommends these specific
funding levels for the U.S. Department of Education programs:
--NCAN recommends the requisite funding in FY22 so that the maximum
Pell Grant award can be increased to $12,990, double the
current maximum award.
--Supplementary Educational Opportunity Grant funding of $1.061
billion.
--Federal Work-Study funding of $1.48 billion.
--TRIO program funding of $1.316 billion.
--GEAR UP funding of $435 million.
--$200 million increase in administrative funding for federal student
aid management.
Additionally, we request that the Corporation for National and
Community Service receive $1.21 billion in funding for FY22--and that
the AmeriCorps program, that allows some college access programs to
provide near-peer mentors for their students, receive $501 million in
funding.
The National College Attainment Network (NCAN), founded in 1995,
represents more than 600 members across the country that all work
toward NCAN's 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% less likely to enroll in postsecondary education directly after
high school than a high-income student. Ultimately, only 35% of low-
income high school students obtain a postsecondary credential by age
26, compared to 72% of high-income students.
The federal investments that would most bolster the goal of closing
attainment gaps include the following:
pell grant investments
NCAN recommends that the maximum Pell Grant award be increased to
$12,990, double the current maximum award. 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, an even smaller portion of students from low-
income backgrounds would be able to access higher education. Congress
has recognized the importance of the Pell Grant over the past five
years by investing in annual increases of, on average, about $140 to
the maximum award.
Given that the previously required automatic inflationary increases
have expired, these annual investments by Congress have been essential
for the nation's students who do not have the means to pay for college
from falling farther behind in their pursuit of higher education. Even
with these investments, the purchasing power of the Pell Grant for a
four-year college degree from a public institution is holding at a
historic low of 29% of the cost of attendance. At its peak in 1975-76,
the maximum Pell Grant award covered more than three-fourths of the
average cost of attendance--tuition, fees, and living expenses--for a
four-year public university.
To address the long-term purchasing power of the Pell Grant, and to
have the Pell Grant be increased so that it covers at least half of the
cost of a four-year public higher education, the maximum award should
be doubled.
In President Biden's budget for FY22, the administration has
requested that Congress consider a Pell Grant increase of $1,875,
through discretionary and mandatory funding, to bring the maximum award
to $8,370 for the 2022-23 award year. If Congress adopted the
President's request, raising the maximum Pell Grant to $8,370, its
purchasing power would significantly increase to 36%. NCAN applauds
this historic investment, referred to in the budget as a ``down payment
on the President's commitment to doubling the grant in future years.''
NCAN encourages Congress to consider a plan for future increases that
would achieve a doubling of the Pell Grant, such as is outlined in the
bicameral Pell Grant Preservation and Expansion Act of 2021--which
would achieve this goal, over a five-year timeframe.
To reach this goal, NCAN requests the requisite funding in FY22 so
that the maximum individual Pell Grant award can be increased to
$12,990, double the current maximum award.
fafsa simplification
In President Biden's budget for FY22, the administration requests a
$200 million increase in administrative funding for federal student aid
management. These funds are 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 one 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 FY22 so that institutions
of higher education to support a greater percentage of the country's
lowest-income students. For FY22, NCAN respectfully requests that
Congress fund the SEOG program at a total of $1.061 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 FY22, NCAN
respectfully requests that Congress increase the FWS program budget for
a total of $1.48 billion.
Federally Funded College Access Programs--TRIO and GEAR UP
Annually, approximately 1.8 million high school seniors are defined
as students from low-income backgrounds. A variety of programs are
needed to meet all their needs as they pursue their options for
education beyond high school. The NCAN community serves approximately 2
million students annually from middle school through college
graduation. To reach all the students needing services nationwide, our
members build important partnerships both with TRIO and GEAR UP
programs. NCAN respectfully requests that Congress continue its
investment in federally funded college access programs at the amounts
requested by their communities: $1.316 billion for TRIO and $435
million for GEAR UP.
corporation for national and community service (cncs)
For every dollar spent on national service, the country sees a
return on investment that is almost fourfold. Service also plays an
important role in the college access movement. Many of NCAN's largest
members can maximize their impact on 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 $1.21 billion and
$501 million, respectively, for FY22.
Thank you for this opportunity to provide our funding priorities
for the fiscal year 2022. 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.
Thank you for your support of this important goal.
Sincerely.
[This statement was submitted by Kim Cook, Executive Director,
National College Attainment Network.]
______
Prepared Statement of the National Council for Diversity
in the 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 Culture 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) 2022 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
2022
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.
The NCDHP recommends $47.95 million for the HCOP program in Fiscal
Year 2022.
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 one-year programs, with 90% being accepted to
medical school, of which >95% will graduate as physicians.
As you begin the FY 2022 process, NCDHP asks that you further
prioritize Title VII health professions training programs. Chairwoman
DeLauro, Ranking Member Cole, 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 2022 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 Eczema Association
summary of fiscal year 2022 appropriations recommendations
_______________________________________________________________________
--Please provide the National Institutes of Health (NIH) with at
least $46.1 billion to expand and advance critical research
activities, and provide individual NIH institutes and centers,
such as the National Institute of Allergy and Infectious
Diseases (NIAID) and the National Institute of Arthritis and
Musculoskeletal and Skin Diseases (NIAMS) with proportional
funding increases.
--While NIH has received notable funding over recent years, funding
for the eczema portfolio has stayed relatively flat and
additional resources are needed.
--Please provide the Centers for Disease Control and Prevention (CDC)
with at least $10 billion to facilitate timely public health
efforts on a variety of conditions, including skin disease.
Additionally, please provide individual CDC centers, such as
the National Center for Chronic Disease Prevention and Health
Promotion (NCCDPHP) with proportional funding increases.
--Please provide $5 million for the new Chronic Disease Education
and Awareness Program at CDC.
_______________________________________________________________________
Thank you for the opportunity to submit testimony on behalf of the
National Eczema Association and the over 31 million eczema patients of
all ages across the country. Chairwoman Murray, Ranking Blunt, and
distinguished members of the subcommittee, thank you for the ongoing
investment in medical research that has facilitated breakthroughs and
scientific progress for the eczema community. As you and your
colleagues work on appropriations for FY 2022, please continue this
investment in medical research and similarly provide robust funding for
public health programs. Thank you for your time and for your
consideration of these requests.
about the national eczema association (nea)
NEA is the driving force for an eczema community fueled by
knowledge, strengthened through collective action and propelled by the
promise for a better future.
Reflecting back and looking ahead led us to appreciate how central
the concept of ``community'' has become to NEA's identity and its
existence, as is now captured in our aforementioned mission statement.
We also recognize that what we mean by the term ``eczema community''
has expanded over the years to reflect a multitude of personal and
professional interests committed to making life better for those who
live with eczema. Many people seek out NEA to connect with others who
understand and share the experience of living with eczema. Each
individual's unique perspective, based on their own experience, is a
source of strength and vibrancy for the diversity of our community.
Through our dedicated advocates, we will share some of those stories
and perspectives with you today.
about eczema
Eczema is the name for a group of conditions that cause the skin to
become itchy, inflamed and red in lighter skin tones or brown, purple,
gray or ashen in darker skin tones. Eczema is very common in both
children and adults and affects all races and ethnicities. In fact,
more than 31 million Americans have some form of eczema- with up to 40%
of affected individuals experiencing more severe disease symptoms and
chronic disease burden.
Eczema is not contagious. You cannot ``catch it'' from someone
else. While the exact cause of eczema is unknown, researchers do know
that people who develop eczema do so because of a combination of genes
and environmental triggers.
When an irritant or an allergen from outside or inside the body
``switches on'' the immune system, it produces inflammation. It is this
inflammation that causes the symptoms common to most types of eczema.
There are seven different types of eczema:
--Atopic dermatitis
--Contact dermatitis
--Neurodermatitis
--Dyshidrotic eczema
--Nummular eczema
--Seborrheic dermatitis
--Stasis dermatitis
It is possible to have more than one type of eczema on your body at
the same time. Each form of eczema has its own set of triggers and
treatment requirements, which is why it is so important to consult with
a healthcare provider who is knowledgeable in treating eczema. Many
healthcare providers can be involved in the diagnosis and treatment of
eczema including primary care providers, pediatricians, dermatologists,
and allergists. Recent years of scientific progress have led to the
emergence of new therapies, but much more work needs to be done in
research and public health to improve care for patients and address
areas of continued unmet treatment and quality of life needs.
recent advancements and emerging research opportunities
NEA's research priorities, including grants that we fund on an
annual basis, focus on improving health outcomes for the community and
translating breakthroughs in basic science to diagnostic tools,
innovative therapies, and improved healthcare information:
--Cutting-Edge Basic & Translational Science- Innovative
investigations of targets, pathways or technologies that will
advance understanding of the pathophysiology or natural history
of eczema, and potentially lead to novel or enhanced
therapeutic/preventative areas of exploration or application.
--Eczema Heterogeneity: Novel Insights- Projects aimed at advancing
understanding of the underlying factors contributing to the
diversity of eczema clinical presentation, treatment response
and comorbidities.
--Innovations in Clinical Practice & Care-Studies addressing
approaches to facilitate optimal identification and treatment
of eczema and associated comorbidities in all health care
settings to enhance patient-reported and patient-centric
outcomes.
--Understanding & Alleviating Disease Burden-Insightful proposals
that identify, quantify or aim to reduce aspects of eczema
burden that negatively affect patient or family/caregiver
quality of life (including lifestyle, academic/occupational, or
economic impacts) based on patient population, treatment
approach, etc.
--Eczema Prevention-Novel investigations into the potential risk
factors and strategies of primary eczema prevention at all
ages.
Our research efforts overlap with NIH-supported research
activities, which currently total a modest-but-meaningful $35 million
annually.
patient stories
People with eczema and their loved ones are the true experts, which
is why we call upon our community regularly to share their stories.
Lindsay is one of our Illinois advocates. She was diagnosed at six
years old with eczema. Now, in her 40s, she wants to ensure that
policymakers understand that eczema is more than just a rash. While
getting access to a biologic has been a challenge (to the point where
she had to miss doses), the medicine has changed the way eczema
presents on her skin. It still gets angry and red, but it no longer
weeps. It will just dry up and flake off. Her body is about 75% clear
on a good day, but she can still get bad flares primarily on her face
and neck.
Andrea is one of our Connecticut advocates. She has had eczema for
15 years and her youngest child was diagnosed with eczema on the back
of her knees two years ago. She advocates that all patients should have
access to specialty care because to help heal eczema you need the right
support and right care to know the underlying cause.
Traciee is one of our Oregon advocates. She advocates on behalf of
herself and all the eczema warriors and their families. She feels
strongly that patients should have access to quality healthcare and
that fellow eczema warriors should not have to suffer in silence with
an uncontrollable itch. The solution is that treatment decisions should
be made by the provider who has received extensive training in this
disease.
[This statement was submitted by Michele Guadalupe, MPH, Associate
Director, Advocacy and Access.]
______
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) 2022 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 and urge you to
take this substantial step forward in this year's bill.
NFPRHA is a non-partisan, non-profit membership association whose
mission is to advance and elevate the importance of family planning in
the nation's health care system; NFPRHA membership includes close to
1,000 members 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. These members cover
the broad spectrum of publicly funded family planning providers,
including state and local health departments, hospitals, family
planning councils, federally qualified health centers, Planned
Parenthood affiliates, and other private non-profit agencies. NFPRHA
represents three-quarters of all current Title X grantees as well as
the majority of grantees that withdrew from the program in 2019 rather
than comply with the Trump administration's program rule.
Title X is the nation's only federal program dedicated to providing
family planning services for people with low incomes across the United
States. In 2018, prior to the implementation of the Trump
administration's devastating regulations, nearly 4,000 health centers
in the network served nearly 4 million patients.\1\ Title X-funded
health centers are lifelines for their communities, providing high-
quality reproductive and sexual health care, including cancer
screenings, testing and treatment for sexually transmitted infections,
HIV/AIDS education and testing, contraceptive services and supplies,
pregnancy testing, and other vital health care services. These centers
disproportionately serve people from communities that face systemic
barriers to accessing quality health care, including people with low
incomes, people who are uninsured or underinsured, people of color,
people who live and work in rural areas, LGBTQ people, and young
people. In fact, 60% of women who received contraceptive services from
a Title X-funded health center in 2016 had no other source of medical
care in the prior year,\2\ and almost two-thirds of patients at these
sites have incomes at or below the federal poverty level.\3\
---------------------------------------------------------------------------
\1\ Christina Fowler et al, ``Family Planning Annual Report: 2018
National Summary,'' RTI International (August 2019). https://
www.hhs.gov/opa/sites/default/files/title-x-fpar-2018-national-
summary.pdf.
\2\ Meghan Kavanaugh, ``Use of Health Insurance Among Clients
Seeking Contraceptive Services at Title X-Funded Facilities in 2016,''
Guttmacher Institute (June 2018). https://www.guttmacher.org/journals/
psrh/2018/06/use-health-insuranceamong-clients-seeking-contraceptive-
services-title-x.
\3\ Christina Fowler et al, ``Family Planning Annual Report: 2019
National Summary,'' RTI International (September 2020). https://
opa.hhs.gov/sites/default/files/2020-09/title-x-fpar-2019-national-
summary.pdf.
---------------------------------------------------------------------------
Unfortunately, the current funding level is woefully below what is
required to meet the family planning and sexual health needs of people
living with low incomes. Title X has been cut or flat-funded every year
for the past decade, and the program's FY2021 allocation is just $286.5
million, the same allocation the program has received for seven fiscal
years, and significantly below the allocation from a decade ago. Other
important public health programs, such as the Title V Maternal-Child
Health Block Grant and the Ryan White HIV/AIDS Program, have seen
significant increases in the same period, and people who rely on
publicly funded family planning care deserve that same investment in
their health care needs. The current allocation is also well below the
$737 million estimate 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.\4\ We urge you to take a substantial step forward
for family planning access and appropriate that $737 million for the
program in FY2022.
---------------------------------------------------------------------------
\4\ 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.
---------------------------------------------------------------------------
This funding increase is particularly vital given the harms the
Trump administration inflicted on the program, the providers funded by
it, and, most importantly, the people who seek family planning and
sexual health care. On July 15, 2019, that administration's 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. In 2018, those health centers
had provided 1.6 million patients with high-quality Title X-supported
family planning and sexual health services.\5\ In September 2020, OPA
released the first federal data showing the impact of the rule, and the
results were devastating: relative to 2018, Title X-funded health
centers provided family planning services to 844,083 fewer patients in
2019, a staggering 21% decrease, and that was after just five months of
having the rule in effect. In addition, fourteen states lost more than
one-third of their patient volume. This drastic decrease translated to
hundreds of thousands of fewer contraceptive services provided, more
than 1 million fewer STD tests administered, and more than 250,000
fewer life-saving breast and cervical cancer screenings performed with
Title X funds.\6\ The numbers for 2020--no doubt exacerbated by the
impact of COVID-19 on health care access--are even worse, with
preliminary data showing that only 1.5 million people were able to
receive Title X-supported services in 2020, a drop of 60% from just two
years earlier.\7\ Six states--Hawaii, Maine, Oregon, Utah, Vermont, and
the chairwoman's home state of Washington--have had no Title X-funded
services for almost two years.
---------------------------------------------------------------------------
\5\ Mia Zolna Sean Finn, and Jennifer Frost, ``Estimating the
impact of changes in the Title X network on patient capacity,''
Guttmacher Institute (February 2020). https://www.guttmacher.org/
article/2020/02/estimating-impact-changes-title-x-network-patient-
capacity.
\6\ Christina Fowler et al, ``Family Planning Annual Report: 2019
National Summary,'' RTI International (September 2020). https://
opa.hhs.gov/sites/default/files/2020-09/title-x-fpar-2019-national-
summary.pdf.
\7\ Ensuring Access to Equitable, Affordable, Client-Centered,
Quality Family Planning Services, 86 Federal Register 19812 (proposed
April 15, 2021) (to be codified at 42 CFR 59).
---------------------------------------------------------------------------
Compounding these harms, a 2020 study shows that COVID-19 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. Women of
color and women with low incomes are more likely to report both
findings.\8\ The confluence of the Trump administration's rule and a
global pandemic means that a significant influx of funds is desperately
needed to begin to rebuild the network and restore Title X services to
communities across the country as quickly as possible.
---------------------------------------------------------------------------
\8\ 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/early-impacts-covid-19-pandemic-findings-
2020-guttmacher-survey-reproductive-health.
---------------------------------------------------------------------------
These funds will be particularly significant given the Biden
administration's commitment to restore the Title X program's commitment
to high-quality, client-centered, evidence-based care by fall 2021.\9\
That process is moving quickly: on April 15, HHS published a notice of
proposed rulemaking, and comments were due on May 17.\10\ NFPRHA
continues to urge HHS to complete the rulemaking process as quickly as
possible and to subsequently make funds available to communities that
have been without services as soon as the new rule is in effect.
---------------------------------------------------------------------------
\9\ Office of Population Affairs, ``Title X Statutes, Regulations,
and Legislative Mandates,'' US Department of Health and Human Services
(March 2021). https://opa.hhs.gov/grant-programs/title-x-service-
grants/title-x-statutes-regulations-and-legislative-mandates.
\10\ Ensuring Access to Equitable, Affordable, Client-Centered,
Quality Family Planning Services, 86 Federal Register 19812 (proposed
April 15, 2021) (to be codified at 42 CFR 59).
---------------------------------------------------------------------------
We thank you for your consideration of this request.
Sincerely.
[This statement was submitted by Clare Coleman, President & CEO,
National Family Planning & Reproductive Health Association.]
______
Prepared Statement of the National Institutes of Health
Good morning, Chairwoman Murray, Ranking Member Blunt, and
distinguished Members of the Subcommittee. I am Francis S. Collins,
M.D., Ph.D., and I have served as the Director of the National
Institutes of Health (NIH) since 2009. It is an honor to appear before
you today.
First, I want to thank this Subcommittee for your commitment to
NIH, which allowed the biomedical research enterprise to respond
quickly to the greatest public health crisis in our generation over the
past year. We mounted vigorous research efforts to understand the viral
biology and pathogenesis of the coronavirus disease 2019 (COVID-19),
develop vaccines in record time, support and commercialize diagnostics
at the point of care, and test therapeutics for both outpatient and
inpatient settings. This work is far from finished.
The President's Discretionary Request proposes budget authority of
$51 billion for NIH in fiscal year (FY) 2022. The Biden Administration
places great emphasis on research and development in general. At NIH in
particular, the Request proposes to build on the successes of pandemic
era research and to put the research enterprise to work on some of our
Nation's most persistent and perplexing health challenges, including
cancer, Alzheimer's disease, opioid use disorder, health disparities,
maternal mortality, HIV/AIDS, gun violence, climate change, and other
areas with major implications for our Nation's health.
First and foremost, the President's Request proposes $6.5 billion
to establish the Advanced Research Projects Agency for Health--ARPA-H
to drive transformational innovation in health research and speed
application and implementation of health breakthroughs. ARPA-H will
tackle bold challenges requiring large scale, cross-sector
coordination, employing a non-traditional and nimble approach to high
risk research, modeled after DARPA in the Department of Defense. To
achieve this, ARPA-H will invest in emergent opportunities by
conducting advanced systematic horizon scans of academic and industry
efforts, leveraging novel public-private partnerships, recruiting
visionary program managers, and using directive approaches that provide
quick funding decisions to support projects that are results-driven and
time-limited. Potential areas of transformative research driven by
ARPA-H include: the use of the mRNA vaccines to teach the immune system
to recognize any of the 50 common genetic mutations that drive cancer;
development of a universal vaccine that protects against the 10 most
common infectious diseases in a single shot; development of wearable
sensors to measure blood pressure accurately 24/7; and leveraging of
artificial intelligence technology to advance care for individual
patients and improve detection of early predictors of disease.
ARPA-H represents the kind of transformative idea for biomedical
research that only comes along once in a long while. Our confidence
that NIH is ready has been greatly advanced by our experience in
addressing the COVID-19 pandemic--developing vaccines in record time,
establishing an unprecedented public-private partnership on
therapeutics that has made it possible to test more than a dozen
possible therapeutics in rigorous trials, and building a venture
capital model for assessing SARS-CoV-2 diagnostic technologies that has
yielded millions of daily tests in just months.
But while we begin to imagine a life after COVID-19, we must
acknowledge that there are COVID-related impacts that we have yet to
understand and address, including the full impact of the pandemic on
children. Children were largely spared from COVID-19 but for some
children, exposure to the COVID-19 virus led to Multisystem
Inflammatory Syndrome in Children (MIS-C), a severe and sometimes fatal
inflammation of organs and tissues. The Eunice Kennedy Shriver National
Institute of Child Health and Human Development (NICHD) is leading a
multi-institute initiative known as the Collaboration to Assess Risk
and Identify loNG-term outcomes for Children with COVID (CARING for
Children with COVID), which will assess both short-term and long-term
effects of MIS-C and other severe illness related to COVID-19 in
children, including cardiovascular and neurodevelopmental
complications.
For many Americans, this pandemic and its related socioeconomic
effects have had an overwhelming impact on their mental health. Prior
research on disasters and epidemics has shown that in the immediate
wake of a traumatic experience, large numbers of affected people report
distress, including new or worsening symptoms of depression, anxiety,
and insomnia. To aid in mental health recovery from the COVID-19
pandemic, NIH will continue to focus on research in this area. This
will be done, in part, by utilizing participants in existing cohort
studies, who will be surveyed on the effect of the pandemic and various
mitigation measures on their physical and mental health.
The COVID-19 pandemic has brought into sharp focus the dramatic
health disparities that exist across the American population. In
addition, the Nation has been shaken by the killing of George Floyd and
other attacks on people of color, forcing a recognition that our
country is still suffering the consequences of centuries of racism. NIH
will continue to address these disparities, specifically through
research managed by the National Institute on Minority Health and
Health Disparities (NIMHD), the National Heart, Lung, and Blood
Institute (NHLBI), the National Institute of Nursing Research (NINR)
and the Fogarty International Center (Fogarty).
NIMHD looks to better understand the human biological and
behavioral mechanisms and pathways that affect disparity populations,
better understand the long-term effects of disasters on health care
systems caring for populations with health disparities and research
focusing on the societal-level mechanisms and pathways that influence
disease risk, resilience, morbidity and mortality. NINR and Fogarty
both look to better understand and reduce rural health disparities in
low-income counties in the southern United States, support nursing
science focused on racial, ethnic, and socioeconomic health
disparities, with the goal of closing the gap in health inequities and
increase health disparity research in low and middle income countries.
In addition to the core health disparities research, the
President's Request puts an additional specific focus on maternal
morbidity and mortality (MMM), which disproportionately affect specific
racial and ethnic minority populations. Black and American Indian/
Alaska Native individuals are two to four times more likely to die from
pregnancy-related or pregnancy-associated causes compared to white
individuals. Furthermore, Black, Hispanic and Latina Americans, Asian,
Pacific Islander, and American Indian/Alaska Native individuals all
have higher incidence of severe maternal morbidity (SMM) compared to
white individuals. The Implementing a Maternal Health and Pregnancy
Outcomes Vision for Everyone (IMPROVE) initiative supports research on
how to mitigate preventable MMM, decrease SMM, and promote health
equity in maternal health in the United States.
As the climate continues to change, the risks to human health will
grow, exacerbating existing health threats and creating new public
health challenges. Major scientific assessments document a wide range
of human health outcomes associated with climate change. While all
Americans will be affected by climate change, underserved populations
are disproportionately vulnerable. These populations of concern include
children, the elderly, outdoor workers, and those living in
disadvantaged communities. NIH is poised to lead new research efforts
to investigate the impact of climate on human health, with the goal to
understand all aspects of health-related climate vulnerability.
Therefore, the President's Request includes a $100 million increase for
research on the human health impacts of climate change.
The FY 2022 President's Discretionary Request makes a major
additional investment to address the opioid crisis. The crisis of
opioid misuse, addiction, and overdose in the United States is a
rapidly evolving and urgent public health emergency that has been
exacerbated by the coronavirus pandemic. Since the declaration of a
public health emergency for COVID, illicit fentanyl use and heroin use
have increased, and overdoses in May 2020 were 42 percent higher than
in May 2019.
The use of opioids together with stimulants, such as
methamphetamine, is increasing; and deaths attributed to using these
combinations are likewise increasing. Taking note of these trends, FY
2021 appropriation language expanded allowable use of Helping to End
Addiction Long-term (HEAL) funds to include research related to
stimulant misuse and addiction. Identifying how opioids and stimulants
interact in combination to produce increased toxicity will enhance our
ability to develop medications to prevent and treat comorbid opioid and
stimulant use disorders and overdoses associated with this combination
of drugs.
Finally, I'd like to take a moment to thank this Subcommittee for
its recognition over the last two years that America's continuing
leadership in biomedical research requires infrastructure and
facilities that are conducive to cutting-edge research. With your
support, we will break ground in the near future on a new Surgical,
Radiological, and Laboratory Medicine division of our Clinical Center,
which will replace severely outdated and deteriorating operating suites
and lab space with state-of-the-art facilities. NIH continuously works
to ensure that the buildings and infrastructure on its campuses are
safe and reliable and that these real property assets evolve in support
of science--but NIH's backlog of maintenance and repair is now nearly
$2.5 billion. The President's FY 2022 Discretionary Request includes
$250 million to make progress on reducing this backlog and requests
flexibility for Institutes and Centers to fund construction, repair,
and improvement projects.
COVID-19 compelled us to perform a stress test on biomedical
research enterprise. The enterprise performed nobly. We found what
worked, and also identified barriers we hadn't fully appreciated
before, and invented new ways around them. The President's FY 2022
Discretionary Request is a roadmap for how to build on the successes of
research, address our gaps, and apply our insights to the most
important problems we face as a nation. With your support, the future
is filled with opportunity. My colleagues and I look forward to
answering your questions.
[This statement was submitted by Francis S. Collins, M.D., Ph.D.,
Director,
National Institutes of Health.]
______
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,
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 a substantive increase,
commensurate with or exceeding the increase for NIH as a whole, for the
National Institute of Diabetes and Digestive and Kidney Diseases
(NIDDK) for kidney research activities. We also urge greater
collaboration between NIDDK and other Institutes studying related
comorbidities and conditions, such as hypertension, cardiovascular
disease, immunology, disparities, and genomics.
about ckd
CKD impacts an estimated 37 million American adults and was the
nation's 8th leading cause of death in 2020. Although it can be
detected through simple blood and urine tests, an estimated 90% of CKD
patients are undiagnosed, often until advanced stages when it is too
late for interventions to slow disease progression. Alarmingly, some
patients are not diagnosed until they have progressed to irreversible
kidney failure (end stage kidney failure, or ESKD) and undergo urgent
start dialysis. More than 750,000 Americans have irreversible kidney
failure, requiring kidney dialysis at least 3 times per week at a
dialysis center; daily home dialysis, or a kidney transplant to
survive. Medicare spends $130 billion on the care of people with a CKD
diagnosis. Individuals with kidney failure represent 1% of Medicare
beneficiaries but comprise 7% of Medicare fee-for-service expenditures.
The need for a substantially increased federal commitment to address
the societal and economic burdens of CKD is undeniable.
CKD is a disease multiplier, with many patients experiencing
cardiovascular disease, bone disease, cognitive challenges, depression,
and increased hospitalization. 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 racial, ethnic, and socioeconomic
disparities. Blacks or African Americans, Hispanics, Asian Americans
and Pacific Islanders, and Native Americans or Alaska Natives are at
higher risk for CKD and ESKD. A common reason is the disproportionate
incidence of chronic comorbidities such as diabetes and hypertension in
many of these groups. While Blacks or African Americans make up 13
percent of the U.S. population, they account for 35 percent of
Americans with kidney failure, and are almost four times more likely
than Whites to progress to kidney failure. Hispanic Americans are 1.3
times more likely than Whites to have kidney failure. Blacks or African
Americans and Hispanics 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. Disparities are present in
kidney transplant as well. Blacks have less access to the kidney wait
list and experience a longer wait once listed. As of May 6, 2021, Black
patients were 31.5% of the kidney wait list candidates, but in 2020
they received only 27% of kidney transplants. Hispanics represent 21%
of the wait list and received 18.4% of kidney transplants.
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 and mortality. In October 2020, COVID-19
hospitalizations were 2,194 per 100,000 Medicare ESKD beneficiaries,
compared to 320 per 100,000 Medicare aged beneficiaries. In data
reported by CDC, from February 1-August 31, 2020, a comparison of
observed and predicted monthly deaths among ESKD patients showed an
estimated 8.7-12.9 excess deaths per 1,000 ESKD patients, or a total of
6,953-10,316 excess deaths. The 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. Transplant
recipients in particular face higher COVID-19 mortality risk. In
addition, patients experiencing 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.
kidney public awareness initiative
A key aspect of the Department of Health and Human Services's 2019
Advancing American Kidney Health (AAKH) Initiative is increased
awareness of CKD among the public and health care practitioners to
improve early detection, provide early intervention and improve
outcomes. Early intervention can slow the CKD progression and, in some
instances, prevent kidney failure, reduce the impact of comorbidities,
and reduce hospitalizations and readmissions. A sustained Kidney 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.
cdc chronic kidney disease initiative
The CDC Chronic Kidney Disease Initiative comprehensive public
health strategy was created at the urging of Congress and NKF 15 years
ago. Annual funding has fluctuated between $1.6 million and $2.6
million. This funding level has supported activities including the
development of a web site for patients, surveillance and epidemiology
activities, and assistance to the National Center for Health Statistics
for CKD data collection. However, a more robust effort is needed to
increase awareness and reduce incidence of CKD. The National Kidney
Foundation requests additional funds to establish a CKD screening
program to detect people at high risk and examine the benefits
screening this population; determine changes in provider behavior and
care, and monitor patients' health outcomes. Additional funding would
also 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. NKF requests $15 million to the CDC for these enhanced
activities.
nih niddk
Despite the high prevalence of CKD and its impact on patients and
Medicare, NIH funding for kidney disease research is only about $700
million annually. NIH invests only $18 per CKD patient, a fraction of
what it spends on other major diseases. Fiscal Year 2021 funding for
NIDDK increased by less than 1%, the smallest percentage increase of
any disease Institute under NIH. From FY 2015-2020, NIH monetary
support for kidney research increased at half the rate of NIH funding
increases overall. America's scientists are at the cusp of many
potential breakthroughs in improving our understanding of CKD,
including genetic kidney disease. Further advances can lead to new
therapies to delay and treat kidney diseases, which has the potential
to provide cost savings to the government like that of no other chronic
disease.
In December 2020, NKF established Research Roundtables comprised of
nephrology leaders from prominent academic institutions, the
pharmaceutical industry, and key bodies with expertise in the multiple
areas of pre-clinical and clinical research, including pediatric
nephrology, genetics, epidemiology, drug development, public health,
and health equity. In addition, kidney disease patients as well as
family members of children with kidney disease and living kidney donors
were recruited to share patient priorities and viewpoints on research
needs.
The Roundtables were charged with identifying pre-clinical and
clinical areas of research in which additional funding could help
bridge existing deficits in kidney disease treatments and reduce kidney
disease incidence, reduce health disparities, and lower healthcare
costs. Their final recommendations are expected in June 2021, which NKF
will share with policy makers.
As the first step towards expanding kidney research opportunities,
NKF requests a substantive funding increase for NIDDK in FY 2022 that
is at least commensurate with if not exceeding the percentage increase
to NIH as a whole. We also request additional support from other
Institutes on 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 2022.
[This statement was submitted by Sharon Pearce, Senior Vice
President,
Government Relations.]
______
Prepared Statement of the National Kidney Foundation, the American
Society of Nephrology, the American Society of Pediatric Nephrology,
and the National Kidney Foundation
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 $46.11 billion
for the National Institutes of Health in FY 2022, an increase of 7.3%
that will provide real growth of 5% after accounting for the biomedical
research and development price index of 2.3%, 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.
Greater investment in kidney research is needed to advance
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 kidney diseases.
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
with a survival rate worse than most cancers (and comparable with brain
cancers), or a kidney transplant, the optimal therapy for most patients
but often inaccessible due to a shortage of organs and inequities in
our nation's transplant health system. Both therapies involve
suppression of the immune system and put patients at increased risk of
communicable diseases--especially COVID-19--and significant racial and
ethnic disparities exist in terms of therapy access and patient
outcomes.
Almost 50 years ago, Congress made a commitment to treat all
Americans with irreversible kidney failure through the Medicare End-
Stage Renal Disease (ESRD) Program regardless of age. Medicare spends
$130 billion on the care of people with kidney diseases, or 22% percent
of all Medicare fee-for-service spending. Of this amount, $49 billion
is spent managing the care of people with kidney failure. Individuals
with kidney failure represent only 1% of Medicare beneficiaries but
comprise 7.2% of Medicare fee-for-service expenditures. 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.
People with kidney diseases face stark racial and socioeconomic
disparities in disease burden and access to care. Black Americans (17%)
and Hispanic Americans (15%) are more likely to have kidney diseases
than white Americans (14%) and these disparities increase as kidney
diseases progress to kidney failure: Black Americans are 3.5 times more
likely than white Americans to have kidney failure and Hispanic
Americans are 1.5 times more likely to have kidney failure than white
Americans. 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.
Kidney disease patients also are at an increased risk of severe
outcomes from COVID-19, such as hospitalization and death, due to their
vulnerable physical conditions, multiple chronic conditions, weakened
immune systems, and for those on dialysis, the need to leave home three
times a week to receive care in a facility with other vulnerable
patients. Further, COVID-19 has been shown to cause kidney damage in as
many as 50% of hospitalized COVID-19 patients, even those without a
previous history of kidney disease, often requiring emergency dialysis.
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. Despite the severe impact of COVID-
19 on people with kidney diseases and kidney health, no dedicated
COVID-19 funding has been provided to NIDDK to-date, forcing research
of the impact of COVID-19 on kidney health to come at the expense of
existing research projects.
Many kidney disease patients also experience comorbidities such as
cardiovascular disease (including heart attack and stroke), anemia,
bone disease, hypertension, and diabetes. Pediatric kidney disease
patients often have rare medical conditions with different needs
associated with them than typical adult patients, which must be better
understood. 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 the natural history of kidney disease and its progression in adults
and children could lead to earlier detection and better treatments to
slow disease progression and perhaps prevent irreversible kidney
failure.
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]; Rachel
Meyer 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
The American Society of Nephrology is a 501(c)(3) non-profit, tax-
exempt organization that leads the fight against kidney disease by
educating the society's more than 21,000 nephrologists, scientists, and
other healthcare professionals, advancing research and innovation,
communicating new knowledge, and advocating for the highest quality
care for patients. For more information, visit www.asn-online.org.
about the american society of pediatric nephrology
Founded in 1969, the American Society of Pediatric Nephrology is a
professional society composed of pediatric nephrologists whose goal is
to promote optimal care for children with kidney disease and to
disseminate advances in the clinical practice and basic science of
pediatric nephrology. ASPN currently has over 600 members, making it
the primary representative of the Pediatric Nephrology community in
North America.
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 Sharon Pearce, Senior Vice
President, Government Relations, National Kidney Foundation, American
Society of Nephrology, American Society of Pediatric Nephrology, and
National Kidney Foundation.]
______
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 2022, we respectfully request that the
subcommittee increase funding for the Program to the amount of
$56,000,000 to eliminate financial and socioeconomic barriers that
reduce access to cellular therapies for thousands of primarily
traditionally underserved patients.
By establishing a national bone marrow donor registry in the mid-
1980s, Congress promised patients with blood cancers, like leukemia and
lymphoma, that they would have a way to find a life-saving donor match.
While bone marrow transplant started as a cure for a single disease, we
now provide cures for over 70 diseases, everything from cancers, blood
disorders, immune deficiencies and Sickle Cell. 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 ten weeks
old, what initially started as severe jaundice quickly landed us in the
Pediatric Intensive Care Unit (PICU) at our local hospital. After
months of tests, on September 7, 2007, our world was officially turned
upside down when we were informed that Andrew 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 two
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 two 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, 106,000 of which are in the National Cord
Blood Inventory, which is also funded by your Committee. When we
couldn't find a matching donor for Andrew right away, a cord blood
transplant was our only hope for his first transplant.
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 you
provided in Fiscal Year 2021, and which we are asking for in Fiscal
Year 2022, 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 $56 million to immediately provide access to
therapy at the point of diagnosis for all patients.
Our bold request this year builds upon the full funding you
provided in Fiscal Year 2021 to clear a pathway for more patients,
especially those from minority and rural communities, to be able to
access transplant services. 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 Multiple Sclerosis Society
Madam Chairwoman and Members of the Subcommittee, the National
Multiple Sclerosis Society (Society) thanks you for this opportunity to
provide testimony regarding fiscal year 2022 (FY22) funding for the
federal agencies under the jurisdiction of the Labor, Health and Human
Services, Education and Related Agencies (LHHS) subcommittee. Nearly
one million people who live with multiple sclerosis (MS) rely on these
agencies and as the U.S. recovers from the COVID-19 pandemic, the
federal agencies and programs under the jurisdiction of this Committee
are more important than ever.
The Society is supportive of the President's FY22 proposed budget
request. We believe this request would support the ability of people
with MS to receive the coverage and services they need and fund
critical research toward a cure for MS. We urge the Subcommittee to
provide the following funding in Fiscal Year 2022 (FY22):
--$500 million for the Agency for Healthcare Research and Quality
(AHRQ)
--$10 billion for the Centers for Disease Control and Prevention
(CDC) inclusive of $5 million for the National Neurological
Conditions Surveillance Program authorized in the 21st Century
Cures Act;
--$14.2 million for the Lifespan Respite Care Program;
--Robust support for Medicare and Medicaid and protection of
Medicaid's current financing structure; and
--At least $46.1 billion for the National Institute of Health (NIH),
--Fully fund the Patient Centered Outcomes Research Institute
(PCORI); and
--At least $13.5 billion for the Social Security Administration's
administrative budget.
MS is an unpredictable, often disabling disease of the central
nervous system that interrupts the flow of information within the
brain, and between the brain and body. Symptoms range from numbness and
tingling to blindness and paralysis. The progress, severity, and
specific symptoms of MS in any one person cannot yet be predicted. The
Society is a fundamental partner to the federal agencies under the LHHS
jurisdiction, and is focused on curing MS while ensuring that people
affected by the disease have what they need to live their best lives.
agency for healthcare research and quality
AHRQ is a small agency that is revolutionizing the healthcare
system based on health care costs and quality. It provides evidence-
based reports for health care providers to use in making health care
safer, higher quality, more accessible, equitable, and affordable.
These reports are vital to patients and the health care community,
which needs high-quality science and evidence-based
information to aid in consultations on treatment decisions. The
Society recommends Congress provide $500 million for AHRQ in FY22.
centers for disease control and prevention
CDC is tasked with protecting public health and safety through the
control and prevention of disease, injury, and disability. COVID-19
demonstrated how years of consistent underfunding impacted the Agency's
ability to fulfill its mission. Part of that mission that is often
overlooked involves data collection for diseases and conditions. The
21st Century Cures Act authorized the creation of the National
Neurological Conditions Surveillance System (NNCSS) at CDC, and
Congress has funded it since 2018. Although COVID-19 has delayed its
efforts, CDC has set up pilot projects in MS and Parkinson's disease to
determine the best method to collected incidence and prevalence data.
These methods would then be expanded to use in other neurologic areas.
Having strong and reliable prevalence data is critical to protecting
the public health and funding new and novel research to treat
neurologic conditions. The Society recommends that Congress increase
funding for the CDC to $10 billion in FY22, inclusive of the $5 million
for the NNCSS.
centers for medicare & medicaid services
Approximately 25-30 percent of the MS population relies on Medicare
as their primary insurer. Many of these individuals are under the age
of 65 and are eligible for Medicare due to disability. The Society
urges Congress to ensure appropriate reimbursement levels for Medicare
providers. These reimbursement levels allow Medicare beneficiaries to
maintain affordable access to prescription drugs, diagnostics, durable
medical equipment, medically necessary speech, physical and
occupational therapy services, and allows the program to update
coverage determinations to keep pace with advances in care.
Up to 15 percent of people with MS are thought to qualify for
Medicaid benefits for all or part of their health and/or long-term care
needs. The Society urges Congress to ensure robust funding for Medicaid
that allows for its enrollees to access benefits that are affordable
and adequate to their needs. Additionally, we advise Congress to oppose
proposals to cap or block grant the program or that impose unreasonable
utilization review practices that can result in disruptions in MS care,
putting patients at risk of disease exacerbations and irreversible
disability. Ensuing that lower income individuals have access to health
coverage and care is vital to the continued health and economic
recovery of the country and we oppose any policy shift that would limit
or cut services for people with MS.
lifespan respite care program
The Lifespan Respite Care Program provides competitive grants to
states to establish or enhance statewide lifespan respite programs that
better coordinate and increase access to quality respite care.
Approximately one quarter of individuals living with MS require long-
term care services at some point during their lifetime. Often, a family
member steps into the role of primary caregiver. Family caregivers
allow the person living with MS to remain home for as long as possible
and avoid premature admission to costlier institutional facilities but
can also become overwhelming. Respite offers professional short-term
help to give caregivers a break from the stress of providing care and
has been shown to provide family caregivers the relief necessary to
maintain their own health and bolster family stability. Many existing
respite care programs have age eligibility requirements, but the
Lifespan Respite Care Program serves families regardless of special
need or age. MS is typically diagnosed between the ages of 20 and 50,
and Lifespan Respite programs are often the only open door to needed
respite services. For these reasons, the Society asks that Congress
provide $14.2 million for the Lifespan Respite Care Program in FY22.
national institutes of health
The importance of the NIH cannot be overstated. It is the nation's
premiere biomedical research institution and drives innovation while
supporting jobs in all 50 states. The NIH is a fundamental partner in
the Society's mission to cure MS while empowering people affected by
the disease to live their best lives. To date, the Society has invested
over $1 billion in MS research; but we rely on Congress to provide
consistent and sustained investments to the NIH to cultivate an
environment that is optimal for scientific discovery and innovation. As
evident by the NIH funding that paved the way to the development of the
mRNA COVID-19 vaccines, NIH continues to provide the basic research
necessary to facilitate the development of novel therapies. In fact,
the NIH has provided the basic research that has led to every MS
treatment that is available today. The Society urges Congress to
provide at least $46.1 billion for the NIH in FY22. This funding level
would allow for meaningful growth of 5% in the NIH base budget, and we
urge the Agency to continue its efforts to diversify its workforce and
grantees and to support the careers of early-career investigators.
patient-centered outcomes research institute
PCORI serves a vital role in ensuring that the public and private
health care sectors have valid and trustworthy data on health outcomes,
clinical effectiveness, and appropriateness of different medical
treatments by both conducting research and evaluating existing studies.
Its research addresses the need for real-world evidence and patient-
focused outcomes data that will improve healthcare quality and help
shift healthcare payment models toward value-based care. To date, PCORI
has invested over $69 million in comparative effectiveness studies in
MS. These studies will provide important evidence for the best ways to
address questions surrounding what care approaches work best for whom
in various care settings and can inform conversations about value that
truly considers the patient perspective. This information is important
to aid in shared decision-making conversations between people with MS
and their healthcare providers in consultations on treatment decisions.
To complete this important work, we urge Congress to fully fund PCORI
in FY22.
social security administration (ssa)
Due to the unpredictable nature and sometimes disabling impairments
caused by the disease, SSA recognizes MS as a chronic illness or
``impairment'' that can cause disability severe enough to prevent an
individual from working. During such periods, people living with MS are
entitled to and rely on Social Security Disability Insurance (SSDI) or
Supplemental Security Income (SSI) benefits to survive. The National MS
Society urges Congress to provide robust funding of at least $13.5
billion for the Social Security Administration's administrative budget
in FY22.
The Society thanks the Committee for the opportunity to provide
written testimony on our recommendations for the base funding for
federal agencies programs under the jurisdiction of the FY22 LHHS
appropriations bill. The above agencies are of vital importance to
people affected by MS and all Americans. Please do not hesitate to
contact the Society with any questions that you may have, and we look
forward to continuing to work with the Committee to help move us closer
to a world free of MS.
[This statement was submitted by Leslie Ritter, Associate Vice
President, Federal Government Relations, National Multiple Sclerosis
Society.]
______
Prepared Statement of the National Pancreas Foundation
summary of fiscal year 2022 appropriations recommendations
_______________________________________________________________________
--The Foundation joins the broader research community in requesting
$46.1 billion in discretionary funding for the National
Institutes of Health (NIH), an increase of $3.2 billion over FY
2021. Further, please provide proportional increases for the
National Cancer Institute (NCI), the National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK), and other
NIH Institutes and Centers.
--Please support adequate funding to establish the new Advanced
Research Projects Agency for Health (ARPA-H) at NIH as
proposed in the Administration's Budget Request to Congress
to facilitate robust and tangible scientific progress on a
variety of conditions, particularly cancers.
--The Foundation joins the broader public health community in
requesting $10 billion in overall funding for the Centers for
Disease Control and Prevention (CDC) to reinvigorate meaningful
professional education, public awareness, and public health
activities.
--Please provide the new CDC Chronic Disease Education and
Awareness Program with $5 million, an increase of $3.5
million over FY 2021, to further advance and expand timely
public health efforts with community stakeholders.
_______________________________________________________________________
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 potential treatments for
pancreatitis. Moreover, we thank you for establishing the new Chronic
Disease Education & Awareness Program at CDC with an initial investment
of $1.5 million in FY 2021. The COVID-19 pandemic has highlighted the
importance of robust investment in public health and with an infusion
of much-needed resources for CDC for FY 2022, please also enhance this
important new initiative. 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. 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. The advancements in the
pancreatitis research portfolio have now led to treatment review
activities at FDA and a critical Patient-Focused Drug Development
Initiative meeting with the community.
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. While the
details in the budget request remain sparse our hope is the new ARPA-H
initiative will greatly enhance cancer research activities at NIH.
Over recent years, key Committee Recommendations have been included
that have moved the pancreas and pancreatitis research portfolios
forward, and it is our hope that the Subcommittee will continue to
demonstrate an interest in this area during the FY 2022 process.
cdc chronic disease education & awareness program
Thank you again for establishing the CDC Chronic Disease Education
& Awareness Program in FY 2021 and providing an initial investment of
$1.5 million. For many years, CDC has lacked public health initiatives
in a variety of conditions where simple interventions can save lives
and lower healthcare costs. Conditions of the pancreas are no exception
and access to simple health information can prevent the progress of
many conditions and in some cases lower the rate of pancreatic cancer.
Many patient organizations are seeking timely collaborations with CDC
that can directly impact patients and improve public health using this
new mechanism. It is important that this emerging program receives
annual funding increases to ensure it can grow and facilitate new
projects. While CDC has the ability to fund meritorious proposals,
there will be no shortage of opportunities and the current investment
of $1.5 million will only go so far. Please increase funding for this
program to $5 million for FY 2022.
Adam Barbosa--Rhode Island
I am a 21 year-old resident of Rhode Island. I had my first
pancreatic episode at age 15. It wasn't until after my third attack,
and many medical tests later, that the Drs. told me I had two genetic
mutations (SPINK1 & CFTR) and a physical anomoly (pancreas divisum)
that were causing my attacks. I was officially diagnosed with chronic
pancreatitis. Since my first attack, my condition went on a downward
spiral. I went from a 3-day hospital stay every 5-6 months to a 7-day
stay every 2 months, then eventually every 2 weeks. At that point, my
case was so severe that the only option I had was to have the TPIAT
surgery at the University of Minnesota. The surgery lasted 14 hours,
required the removal of 4 organs [pancreas and spleen included], and
left me with post-operative cognitive dysfunction. A condition that has
crippled my college studies and hope for a ``normal'' future. Also,
without a pancreas, I became an instant Type-1 diabetic. I now have to
count carbs, dose myself with insulin and slug down a fistful of pills
[pancreatic enzymes] before anything I eat/drink . I suffer with
significant digestive issues and have lost 40 lbs. since surgery. Every
day is an intense physical, mental, and emotional struggle. I suffer
from depression, anxiety and panic attacks. Things I have come to find
patients with a chronic illness have to deal with on a daily basis.
There is no real ``Recovery'' from this surgery. My life is simply an
agonizing waiting game for medical advancements.
Jenny Jones--Illinois
I am 36 and live in Chicago, Illinois. I was 9 or 10 years old when
I experienced my first pancreatitis attack; my pediatrician at the time
ran blood work and immediately said I would need a liver transplant.
She also recommended we get a second opinion and see a GI pediatrician
specialist at another local hospital. After a full battery of tests,
the physician came to the conclusion that I probably had chronic
pancreatitis. I am glad that we went for the second opinion. I battled
this disease throughout my life, but it ceased after my ERCP from the
ages of 17-24. But, when I was 24 the pancreatitis had returned and by
then my sister was also diagnosed with pancreatitis. Life was ever more
challenging, the pain intolerable, and I could not imagine living
another 5-10 years this way. At this point, I had already become a Type
2 diabetic along with dealing with CP. In 2019, I had my 13-hour Total
Pancreatectomy Auto Islet Cell Transplant at the University of Chicago
Medicine on the South Side of Chicago where they removed my pancreas
and transferred any working islets from the pancreas into my liver,
removed half my stomach, small intestine, and duodenum. I am almost
one-year post op and although I am now Type 3C diabetic, I am glad I
choose to have the surgery. I am totally insulin-dependent and rely on
an insulin pump as my islets have not awakened yet. My life post-op has
been very challenging and I still deal with a measure of pain, and
digestive issues. Despite all the surgeries and debilitating illnesses
I have learned to become an advocate for others dealing with any
chronic debilitating illness.
Cecilia Petricone--Connecticut
My story with pancreatitis started at the age of 12-years-old. Just
a few weeks before I was supposed to start middle school I suddenly
woke up with excruciating abdominal pain. After the first
hospitalization, I started seeing lots of doctors including pancreatic
specialists, my official diagnosis became Idiopathic Recurrent Acute
Pancreatitis. During the first couple of years, I had genetic testing
done which showed I have a SPINK1 mutation, which made me more prone to
pancreatitis.
Doctors spent years trying to manage my symptoms. We tried changes
to my diet, getting more rest, staying extra hydrated, taking
precautions when I got onto airplanes, going on an anti-anxiety and
getting multiple pancreatic stents--nothing worked. In fact, my
condition worsened! My freshman year at Boston College was when things
really escalated. My yearly hospitalizations had become 2-3 a year and
my diagnosis transitioned from acute pancreatitis to chronic. My
sophomore year of college I made a visit to the ER, unaware that it was
the beginning of back-to-back pancreatitis attacks that left me living
in a hospital for the majority of time between October 2017 and
February 2018. I left school, finishing the fall semester partially
from a hospital bed 3 months later than my classmates. I lost a
significant amount of weight, was malnourished, and began losing my
hair.
That was until March, when my pancreatic specialist recommended I
consider getting a Total Pancreatectomy and Islet Auto Transplant
(TPIAT). In April of 2018, I had the surgery. Fast forward three years
later, I am in no pain and realize I am one of the lucky ones as having
the TPIAT does not guarantee a life of being pain-free. I have Type 3C
diabetes which I monitor and manage on a daily basis. While I am pain-
free, there are mental and emotional hurdles that come with medical
experiences as all-encompassing as this. I am deeply grateful to be
healthy and to no longer suffer from pancreatitis and I believe that
mental health is an incredibly important component of medical issues
that needs to be addressed.
Jane Holt--Rhode Island
My name is Jane Holt and I am a patient with chronic pancreatitis
from Rhode Island. My journey began in early January, 1988. I was at
home, asleep, with my husband and four young children. I woke up in the
middle of the night in excruciating pain. It felt as though my insides
were exploding. I knew immediately there was something terribly wrong
and I needed to go to the hospital. Ten days later my gall bladder was
removed, after the surgery, I told the surgeon that the original pain
was still there. I was able to get an appointment with a
gastroenterologist at BI Deaconess Hospital in Boston in October, 1988.
After doing a medical history and blood work my doctor said he thought
I had pancreatitis. I had an ERCP that confirmed this diagnosis.
Finally, a cause for the pain and it only took several months instead
of years for some patients. In November I had major surgery on my
pancreas to open the ducts to my pancreas and the journey continued.
Since then, I've had a few ERCPs, many MRCPs, CAT scans,
Ultrasound, and thousands and thousands of blood tests. I have
travelled to Mayo Clinic, Lahey Clinic, George Washington Hospital for
second opinions. My doctor has brought my records to many medical
meetings for input from other physicians. Over the last 32 years I have
done everything I can to try and fix this disease or at least find out
more about it. For most patients treatment hasn't changed. The only
treatment for patients is hospitalization and I would be hospitalized 3
or 4 times a year, sometimes for as long as a month. It is now even
getting harder to get the one thing that can help, pain medication. We
can't ignore patients like me. We have to do something to make a
difference for all of our patients.
[This statement was submitted by David Bakelman, Chief Executive
Officer,
National Pancreas Foundation.]
______
Prepared Statement of the National Respite Coalition
Mr. Chairman, I am Jill Kagan, Chair, National Respite Coalition
(NRC), a network of state respite coalitions, providers, caregivers,
and national, state and local organizations. We are requesting $14.2
million in the FY 2022 Labor, HHS, and Education Appropriations bill
for the Lifespan Respite Care Program administered by the
Administration for Community Living, Department of Health and Human
Services. The request is consistent with the Administration's request
to double funding for the program and will allow all States to receive
a Lifespan Respite Grant to help family caregivers, regardless of care
recipient's age or disability, access affordable respite. Additional
funding will help states improve respite quality; expand the respite
workforce; and use person and family-centered approaches that provide
family caregivers tailored information on how to find, use and pay for
respite services.
The pandemic cast a harsh light on the lack of supports for the
nation's family caregivers. When congregate and group settings became
too risky for older adults and people with disabilities, the importance
of family caregivers to providing care at home was greatly amplified.
At the same time, the availability of services, such as respite, became
harder to access. The Lifespan Respite network responded with flexible
respite and support options for family caregivers. During this
challenging time, this may have been the only support they received.
Respite Care Saves Money and Benefits Families. Now, more
importantly than ever, delaying a nursing home placement for
individuals with Alzheimer's or avoiding hospitalization for children
with autism can save Medicaid billions of dollars. Researchers at the
University of Pennsylvania studied records of 28,000 children with
autism enrolled in Medicaid and concluded that for every $1,000 states
spent on respite, there was an 8% drop in the odds of hospitalization
(Mandell, et al., 2012). Respite may help delay or avoid facility-based
placements (Gresham, 2018; Avison, et al., 2018), improve maternal
employment (Caldwell, 2007), strengthen marriages (Harper, 2013), and
reduce caregiver depression, stress and burden linked to caregiver
health (Broady and Aggar, 2017; Lopez-Hartmann, et al., 2012; Zarit, et
al., 2014).
With at least two-thirds (66%) of family caregivers in the
workforce (Mantos, 2015), U.S. businesses lose from $17.1 to $33.6
billion per year in lost productivity of employed caregivers (MetLife
Mature Market Institute, 2006). Higher absenteeism among working
caregivers costs the U.S. economy an estimated $25.2 billion annually
(Witters, 2011). The University of NE Medical Center conducted a survey
of caregivers receiving respite through the NE Lifespan Respite Program
and found that 36% of family caregivers reported not having enough
money at the end of the month to make ends meet, but families overall
reported a better financial situation when receiving respite (Johnson,
J., et al., 2018).
Who Needs Respite? About 53 million unpaid family caregivers of
adults provide care worth $470 billion annually (National Alliance for
Caregiving and AARP, 2020; Reinhard, SC, et al., 2019). Eighty percent
of those needing long-term services and supports (LTSS) are living at
home. Two-thirds of older people with disabilities receiving LTSS at
home receive care exclusively from family caregivers (Congressional
Budget Office, 2013).
Concerns about providing care for a growing aging population are
paramount. However, caregiving is a lifespan issue. The majority (54%)
of family caregivers care for someone between the ages of 18 and 75
(NAC and AARP, 2020). In addition, nearly 14 million children with
special health care needs require specialized care from parents and
guardians (Child and Adolescent Health Measurement Initiative, 2021).
Families caring for children with special health care needs provide
nearly $36 billion worth of care annually (Romley, et al., 2016).
National, State and local surveys have shown respite to be among
the most frequently requested services by family caregivers (Anderson,
L, et al., 2018; Maryland Caregivers Support Coordinating Council,
2015). Yet, 86% of family caregivers of adults did not receive respite
services at all in 2019 (NAC and AARP, 2020). Nearly half of family
caregivers of adults (44%) identified in the National Study of
Caregiving were providing substantial help with health care tasks, yet,
fewer than 17% used respite (Wolff, 2016). The percentage is similar
for parents of children with disabilities. The Elizabeth Dole
Foundation continues to recommend that respite should be more widely
available to military and Veteran caregivers.
Respite Barriers and the Effect on Family Caregivers. While most
families want to care for family members at home, research shows that
family caregivers are at risk for emotional, mental, and physical
health problems (American Psychological Association, 2012; Spillman,
J., et al., 2014). When caregivers lack effective coping styles or are
depressed, care recipients may be at risk for falling, developing
preventable secondary health conditions or limitations in functional
abilities. The risk of care recipient abuse increases when caregivers
are depressed or in poor health (American Psychological Association,
nd). Parents of children with special health care needs report poorer
general health, more physical health problems, worse sleep, and
increased depressive symptoms compared to parents of typically
developing children (McBean, A, et al., 2013).
Respite, that has been shown to ease family caregiver stress, is
too often out of reach or completely unavailable. In a survey of more
than 3000 caregivers of individuals with intellectual and developmental
disabilities (ID/DD), nine in ten reported that they were stressed.
Nearly half (49%) reported that finding time to meet their personal
needs was a major problem. Yet, more than half of the caregivers of
individuals with ID or Autism Spectrum Disorder reported that it was
difficult or very difficult to find respite care (Anderson, L., et al.,
2018). Respite may not exist at all for those with Alzheimer's, ALS,
MS, spinal cord or traumatic brain injuries, or children with serious
emotional conditions.
Barriers to accessing respite include fragmented and narrowly
targeted services, cost, and the lack of information about respite or
how to find or choose a provider. Moreover, a critically short supply
of well-trained respite providers or meaningful service options may
prohibit a family from making use of a service they so desperately
need.
Lifespan Respite Care Program Helps. The Lifespan Respite Care
Program, designed to address these barriers to respite quality,
affordability and accessibility, is a competitive grant program to
states administered by ACL in the Administration on Aging. The premise
behind the program is both care relief and cost effectiveness. Lifespan
Respite provides funding to states to expand and enhance local respite
services across the country, coordinate services to reduce duplication
and fragmentation, and improve respite access and quality.
Since 2009, 37 states and DC have received Lifespan Respite grants.
The program received $4.1 million in FY 18 and FY 19, and $6.1 million
in FY 2020. We are grateful for the increase to $7.1 million in FY
2021; however, the program received no emergency Congressional
supplemental funding during the pandemic, despite the elevated need.
With these funds, States are required to establish statewide
coordinated Lifespan Respite care systems to serve families regardless
of age or special need; provide planned and emergency respite care;
train and recruit respite workers and volunteers; and assist caregivers
in accessing respite. Lifespan Respite helps states maximize use of
limited resources and deliver services more efficiently to those most
in need. Increasing funding could allow funding for all states and help
current grantees complete their ground-breaking work in serving the
unserved, and ensuring sustainability by integrating services into
statewide No Wrong Door systems for long-term services and supports.
During the current pandemic, when family caregiver social isolation
is escalating, grantees and their primary partners continue to provide
respite safely in states where they are permitted to do so. They are
the frontline workers who may be the only outside contact and support
these families are receiving. If they cannot provide in-person respite,
the network has expanded support services to include regular phone call
check ins, delivery of care packages, online support groups, virtual
training and other educational services via Facebook and other social
media outlets.
How is Lifespan Respite Program Making a Difference? Key
accomplishments of State Lifespan Respite grantees are highlighted in a
new ARCH National Respite Network report, In Support of Caregivers
[archrespite.org/key-accomplishments]. State Lifespan Respite programs
are engaged in the following innovative activities:
--AL, AR, AZ, CO, DE, MD, MT, ND, NE, NV, NC, OK, RI, SC, TN, VA, WA,
and WI, administer successful self-directed respite vouchers
for underserved populations, such as individuals with
Alzheimer's disease, traumatic brain injury, MS or ALS, adults
with intellectual or developmental disabilities (I/DD), rural
caregivers, or those on waiting lists for services. When
families were willing and states allowed it, these programs
continued to operate with enhance flexibilities during the
pandemic.
--AL's respite voucher program found a substantial decrease in the
percentage of caregivers reporting how often they felt
overwhelmed with daily routines after receiving respite.
Caregivers in NE's Lifespan Respite program reported
significant decreases in stress levels, fewer physical and
emotional health issues, and reductions in anger and anxiety.
--Innovative and sustainable respite services, funded in AL, CO, MA,
NC, and NY through mini-grants to community-based agencies,
also have documented benefits to family caregivers.
--AL, MD, ND and NE offer emergency respite and AL, AR, CO, NE, NY,
PA, RI, SC and TN implemented new volunteer or faith-based
respite services.
--Respite provider recruitment and training are priorities in NE, NY,
SC, SD, VA, and WI.
State agency partnerships are changing the landscape. Lifespan
Respite WA, housed in Aging & Long-Term Support Administration,
partnered with WA's Children with Special Health Care Needs Program,
Tribal entities and the state's Traumatic Brain Injury program to
provide respite vouchers to families across ages and disabilities. The
OK Lifespan Respite program partnered with the state's Transit
Administration to develop mobile respite in isolated rural areas.
States, including NC, NY and NV, are building ``no wrong door systems''
in partnership with Aging and Disability Resource Centers to improve
respite access. States are developing long-term sustainability plans,
but without continued federal support, many grantees will be cut off
before these initiatives achieve their full impact.
During the pandemic, social isolation and severe mental health
issues among family caregivers intensified. The CDC found that ``unpaid
adult caregivers reported having experienced disproportionately worse
mental health outcomes, increased substance use, and elevated suicidal
ideation.'' The Lifespan Respite network responded with flexible and
innovative respite options. For countless caregivers, respite became
their only lifeline to supports, services, and vital human connection.
OK, ND, NV, WA, VA, and WI were some of the states that introduced
flexibility to their respite voucher programs to encourage use, such as
expanded eligibility and timeframes, increased flexibility in who could
provide respite to include other family members in the home, and
increased voucher amounts. Other Lifespan Respite grantees met the
needs of family caregivers through new and creative approaches:
Alabama: Alabama Lifespan Respite, in order to increase targeted
support to caregivers during the pandemic, offered Care Chats (one-on-
one support by phone or video conferencing) with their social worker
staff, monthly support groups, and caregiver mental health education
opportunities to help increase overall caregiver wellness. Alabama
Lifespan Respite also introduced a Caregiver Wellness Initiative that
increases Emergency Respite reimbursement funds and designates funds
specifically for mental health counseling to caregivers currently
enrolled with their reimbursement (voucher) program. The intended
impacts of the Caregiver Wellness Initiative include decreases in
caregiver stress, anxiety, fatigue, and burnout after receiving
Emergency Respite and/or mental health counseling.
Tennessee: The TN Respite Coalition awarded mini-grants for
caregiver-selected items, such as personal protective equipment,
tablets enabling internet access to online support groups, home
exercise equipment, and movie or magazine subscriptions. Expanding
ideas of traditional respite services, the Tennessee Respite Voucher
Program provided respite in innovative ways that allowed for safe
social distancing but maintained caregiver-provider contact that kept
caregivers socially connected during times of increased stress and
isolation.
No other federal program has respite as its sole focus, helps
ensure respite quality or choice, and supports respite start-up,
training or coordination. We urge you to include $14.2 million in the
FY 2022 Labor, HHS, and Education appropriations bill. Families will be
able to keep loved ones at home safely and ensure their own well-being,
saving Medicaid and other federal programs billions of dollars.
For more information, please contact Jill Kagan, National Respite
Coalition at [email protected]. Complete references available on
request.
[This statement was submitted by Jill Kagan, Chair, National
Respite Coalition.]
______
Prepared Statement of the National Technical Institute for the Deaf
Mr. Chairman and Members of the Committee:
I respectfully submit the FY 2022 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 students study at the
associate, baccalaureate, master's and doctoral levels as part of a
university (RIT) that includes more than 17,000 hearing students. NTID
also provides baccalaureate and graduate-level education for hearing
students in professions serving deaf and hard-of-hearing individuals.
budget request
On behalf of NTID, for FY 2022 I would like to request $89,700,000
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 24% of NTID's Operations budget
coming from non-federal funds, up from 9% in 1970. Since FY 2006, NTID
raised more than $26 million in support from individuals and
organizations.
NTID's FY 2022 request of $89,700,000 includes $3,400,000 for
establishing a national hub of innovation for deaf scientists in
Rochester, New York. The ``Hub'' will be a collaborative partnership
with the University of Rochester and Rochester Regional Health that
will enhance the access of deaf and hard-of-hearing persons to career
opportunities as scientists, biomedical researchers and health
professionals. Hub programs will include a summer research program, a
pre-career training pipeline for deaf and hard-of-hearing scientists,
mentoring programs, a postdoc-to-faculty program, and guidance for
biomedical research institutions and medical schools on best practices
for training deaf and hard-of-hearing scientists and health
professionals. The coronavirus has also demonstrated the national need
for timely, accurate and official information in ASL about pandemics
and health care concerns--a service the Hub could provide.
NTID's FY 2022 request also includes an additional $2,000,000 to
expand the NTID Regional STEM Center (NRSC) partnership, which serves
deaf and hard-of-hearing students in 12 southeastern states by
promoting training and postsecondary participation in STEM fields,
providing professional development for teachers, and developing
partnerships with business and industry to promote employment
opportunities. Via the NRSC, deaf and hard-of-hearing middle school
students are introduced to STEM programs and careers that will help
inform their academic and career decisions. Deaf and hard-of-hearing
high school students can take NTID STEM dual-credit courses and
participate in career exploration and college preparation programs that
will help them transition from high school to college. In FY 2020, up
to 2,023 educators, 1,685 students, 590 employers, 379 interpreters,
241 parents, and 190 vocational rehabilitation staff enrolled in NRSC
programs (some may have enrolled in multiple programs).
NTID's FY 2022 operations request also provides $700,000 to
establish a Computer Science and Cybersecurity Training Center for deaf
and hard-of-hearing students based at RIT's new Global Cybersecurity
Institute (GCI), a 52,000-square-feet facility providing students,
researchers and industry professionals with the most advanced
technology tools and education offerings to help further digital
security across the world. The Cybersecurity Training Center would
allow NTID to build on its new partnership with the GCI, which is
currently offering a boot camp to deaf and hard-of-hearing students
that results in an RIT GCI Cybersecurity Bootcamp Certificate and
preparation for industry-standard certifications, including CompTIA
Security+ and Cybersecurity First Responder. Finally, the requested
increase in operations will also provide $2,100,000 for NTID to manage
inflationary costs.
enrollment
Truly a national program, NTID has enrolled students from all 50
states. In Fall 2020 (FY 2021), NTID's enrollment was 1,101 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 2021, 185 deaf and hard-of-hearing high school
students enrolled in dual-credit courses at partner high schools.
ntid academic programs
NTID offers high quality, career-focused associate degree programs
preparing students for specific well-paying technical careers. NTID
also provides transfer associate degree programs to better serve our
student population seeking bachelor's, master's, and doctoral degrees.
These transfer programs provide seamless transition to baccalaureate
and graduate studies in the other colleges of RIT.
A cooperative education (co-op) component is an integral part of
academic programming at NTID and prepares students for success in the
job market. A co-op assignment gives students the opportunity to
experience a real-life job situation and focus their career choice.
Students develop technical skills and enhance vital personal skills
such as teamwork and communication, which will make them better
candidates for full-time employment after graduation. Last year, 181
students participated in 10-week co-op experiences that augment their
academic studies, refine their social skills, and prepare them for the
competitive working world.
student accomplishments
NTID deaf and hard-of-hearing students persist and graduate at
rates higher than or on par with national persistence and graduation
rates for all students at two-year and four-year colleges. For NTID
deaf and hard-of-hearing graduates, over the past five years, an
average of 95% have found jobs commensurate with their education level.
Of our FY 2019 graduates (the most recent class for which numbers are
available), 95% were employed one year later, with 77% employed in
business and industry, 16% in education and non-profits, and 7% 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% of NTID deaf and hard-of-hearing
graduates with bachelor degrees and 73% with associate degrees report
earnings, compared to 58% of NTID deaf and hard-of-hearing students who
withdrew from NTID and 69% 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% of NTID deaf and hard-of-hearing associate and bachelor degree
graduates participated in the SSI program compared to 8% of deaf and
hard-of-hearing students who withdrew from NTID. Similarly, at age 50,
only 18% of NTID deaf and hard-of-hearing bachelor degree graduates and
28% of associate degree graduates participated in the SSDI program,
compared to 35% 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 2020, 118,240 hours of interpreting and 21,856 hours of
real-time captioning were provided to students.
summary
NTID's FY 2022 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% over the past five
years. Therefore, I ask that you please consider funding our FY 2022
request of $89,700,000 for Operations.
We are hopeful that the members of the Committee will agree that
NTID, with its long history of successful stewardship of federal funds
and an outstanding educational record of service to people who are deaf
and hard of hearing, remains deserving of your support and confidence.
Likewise, we will continue to demonstrate to Congress and the American
people that NTID is a proven economic investment in the future of young
deaf and hard-of-hearing citizens. Quite simply, NTID is a federal
program that works.
[This statement was submitted by Dr. Gerard J. Buckley, President,
National Technical Institute for the Deaf and Vice President and Dean,
Rochester Institute of Technology.]
______
Prepared Statement of the National Viral Hepatitis Roundtable
Dear Chairwoman Murray, Ranking Member Blunt, and members of the
subcommittee,
I am writing on behalf of the National Viral Hepatitis Roundtable
(NVHR), a coalition of patients, health care providers, community-based
organizations, and public health partners fighting for an equitable
world free of viral hepatitis. We are respectfully requesting an
increase in funding to CDC's Division of Viral Hepatitis (DVH), to no
less than $134 million in FY 2022 from its current level of $39.5
million for FY 2021.
According to data released by the CDC last month, cases of acute
hepatitis A increased by a staggering 1300% between 2015 and 2019,
representing outbreaks of person-to-person transmission of this
vaccine-preventable infection linked to substance use and homelessness.
While reported rates of new hepatitis B infections generally remained
stable over this period, the overwhelming majority occurred among
unvaccinated adults between the ages of 30 and 59, with a substantial
number of cases linked to injection drug use. Over this time period,
acute hepatitis C cases surged by 63%, with estimated new infections
now exceeding annual rates of new HIV infections in the United States.
Specifically, CDC estimates 57,500 new hepatitis C infections for 2019,
while noting that the true number could be as high as 196,000.
The tragedy of our viral hepatitis response is that these cases
reflect failures in prevention, exacerbations in health disparities,
and gaps in our public health system. We have strong tools--including
vaccination for hepatitis A and B, alongside syringe services programs
and medication-assisted treatment for opioid use disorder for hepatitis
C--proven effective and well-established in preventing new infections,
when implemented comprehensively and at scale. Chronic hepatitis B is
treatable and chronic hepatitis C is curable, and indeed CDC's
surveillance data and 2021 National Viral Hepatitis Progress Report
show promising momentum in decreasing mortality from hepatitis B and
hepatitis C, including among communities burdened with substantial
racial/ethnic health disparities (Asian and Pacific Islander
communities for hepatitis B, and American Indian/Alaskan Native persons
and African Americans for hepatitis C).
The Department of Health and Human Services released a new National
Viral Hepatitis Strategic Plan at the beginning of 2021, committing the
nation to eliminate viral hepatitis as a public health threat by 2030
and outlining a comprehensive and credible set of strategies and
priorities to achieve this goal. However, we cannot meet this challenge
without reckoning with the persistent underfunding of viral hepatitis
within the CDC budget, a chronic shortfall that cascades down to states
and local communities struggling to keep pace with shifting trends and
increased new cases as a downstream consequence of the broader opioid
and stimulant health crisis. CDC's Division of Viral Hepatitis plays an
essential role in leading our public health efforts towards viral
hepatitis elimination, but can only fulfill that promise with adequate
resources. We strongly urge the subcommittee to strengthen our public
health infrastructure by investing at least $134 million in CDC's
Division of Viral Hepatitis for FY 2022.
In tandem with this investment, we respectfully request that the
subcommittee increases CDC's funding for eliminating opioid-related
infectious diseases to $120 million in FY 2022, to accelerate urgent
efforts to support building out programmatic infrastructure--
particularly syringe services programs (SSPs)--capable of prevention
and linkage to care for not only HIV and viral hepatitis but other
infectious diseases such as endocarditis which disproportionately
affect people who inject drugs. These programs continue to serve on the
frontlines of both the COVID-19 pandemic and the overdose epidemic,
uniquely effective at engaging a highly vulnerable and marginalized
population that other systems--including health care--struggle to
engage, serve, and retain in a timely and effective manner. In keeping
with the vital importance of resourcing these programs, we similarly
urge the subcommittee to remove restrictions on the use of federal
funds to purchase sterile syringes in order to maximize the impact and
benefits of these programs.
In conclusion, we thank the subcommittee for their commitment to
public health and attention to viral hepatitis, and would be eager to
respond to questions or provide additional information and context to
support your work.
[This statement was submitted by Daniel Raymond, Director of
Policy, National Viral Hepatitis Roundtable.]
______
Prepared Statement of the NephCure Kidney International
summary of recommendations for fiscal year 2022
_______________________________________________________________________
--Provide $46.1 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 $10 billion for the Centers for Disease Control and
Prevention (CDC) and $5 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 as a result 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 which lower the immune system
and contribute to severe bacterial infections, high blood pressure and
other problems in patients, particularly child patients. In addition,
children with NS often experience growth retardation and heart disease.
Finally, NS that is caused by FSGS, MCD or MN is idiopathic and can
often reoccur, even after a kidney transplant.
FSGS disproportionately affects minority populations and is five
times more prevalent in the African American community. In a
groundbreaking study funded by NIH, researchers found that FSGS is
associated with two aggressive APOL1 gene variants. 75% 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% of its entire budget, on ESRD. In 2005, FSGS accounted
for 12% 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, ORDR
established the Rare Disease Clinical Research Network. This network
provided an opportunity for NephCure Kidney International, the
University of Michigan, and other university research health centers to
come together to form the 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 five-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 trial
leading to more trials than ever before. This has led to the creation
of the Kidney Health Gateway Clinical that will connect patients with
breakthrough clinical trials and access top Nephrotic Syndrome doctors
all in one place. These crucial trials will hopefully lead to more
treatment options for our patients.
CHRONIC DISEASE EDUCATION AND AWARENESS
We thank the Subcommittee for the creation of the Chronic Disease
Education and Awareness Program in FY2021 and encourage continued
support by providing $5 million for this critical program in FY2022.
Patient Perspective
Meet 13-year-old Macy! She was diagnosed with Nephrotic Syndrome
and later FSGS when she was three. Her 10-year journey with kidney
disease has been long and hard. Macy did not respond to treatments for
her kidney disease and within two years of diagnosis, her native
kidneys were damaged beyond repair and she was in kidney failure and on
dialysis. At the age of five, she received a living donor kidney
transplant, but her disease, FSGS came back and attacked her new to her
kidney. It took a full year of aggressive treatments to get Macy's FSGS
into remission post-transplant. For the past 10 years, Macy has taken
18 to 26 medications a day. Those medications and her kidney disease
have led to multiple co-morbidities. She is currently followed by 7
specialties, has endured 30+ surgeries & been hospitalized over 100
times. Macy participates in the Beads of Courage program in which she
earns different beads for each procedure, appointment etc. The strand
of beads you see in this photo are just the beads she earned in 2018!
Those black beads are for pokes (lab draws, IV's, Shots) and Macy
earned over 400 last year. As you can see kidney disease is tough!
Although Macy continues to struggle with kidney disease and will need
another transplant sooner than later, she doesn't let that stop her
from living life! Macy loves dancing and musical theater, art, and
hanging out with her dog Bentley!
Thank you for the opportunity to present the views of the FSGS/NS
community.
[This statement was submitted by Irving Smokler, PH.D., Board
Chairman, Acting President and Founder, NephCure Kidney International.]
______
Prepared Statement of the Neurofibromatosis Network
Thank you for the opportunity to submit testimony to the
Subcommittee on the importance of funding for the National Institutes
of Health (NIH), and specifically for continued research on
Neurofibromatosis (NF), a genetic disorder closely linked to many
common diseases widespread among the American population. My name is
Kim Bischoff and I am the Executive Director of the Neurofibromatosis
(NF) Network, a national organization of NF advocacy groups. We
respectfully request that you include the following report language on
NF research at the National Institutes of Health within the Office of
the Director account in the Fiscal Year 2022 Labor, Health and Human
Services, Education Appropriations bill.
Neurofibromatosis [NF].--The Committee supports efforts to increase
funding and resources for NF research and treatment at multiple
Institutes, including NCI, NINDS, NIDCD, NHLBI, NICHD, NIMH, NCATS, and
NEI. Children and adults with NF are at elevated risk for the
development of many forms of cancer, as well as deafness, blindness,
developmental delays and autism; the Committee encourages NCI to
increase its NF research portfolio in fundamental laboratory science,
patient-directed research, and clinical trials focused on NF-associated
benign and malignant cancers. The Committee also encourages NCI to
support clinical and preclinical trials consortia. Because NF can cause
blindness, pain, and hearing loss, the Committee urges NINDS to
continue to aggressively fund fundamental basic science research on NF
relevant to restoring normal nerve function. Based on emerging findings
from numerous researchers worldwide demonstrating that children with NF
are at significant risk for autism, learning disabilities, motor
delays, and attention deficits, the Committee encourages NINDS, NIMH,
and NICHD to increase their investments in laboratory-based and
patient-directed research investigations in these areas. Since NF2
accounts for approximately 5 percent of genetic forms of deafness, the
Committee encourages NIDCD to expand its investment in NF2-related
research. NFl can cause vision loss due to optic gliomas. The Committee
encourages NEI to expand its investment in NF1-focused research on
optic gliomas and vision restoration.
On behalf of the Neurofibromatosis (NF) Network, I speak on behalf
of the over 100,000 Americans who suffer from NF as well as the
millions of Americans who suffer from diseases and conditions linked to
NF such as cancer, brain tumors, heart disease, memory loss, and
learning disabilities. Thanks in large part to this Subcommittee's
strong support, scientists have made enormous progress since the
discovery of the NF1 gene in 1990 resulting in clinical trials now
being undertaken at NIH with broad implications for the general
population.
NF is a genetic disorder involving the uncontrolled growth of
tumors along the nervous system which can result in terrible
disfigurement, deformity, deafness, pain, blindness, brain tumors,
cancer, and even death. In addition, approximately one-half of children
with NF suffer from learning disabilities. NF is the most common
neurological disorder caused by a single gene and is more common than
Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's disease
and Tay Sachs combined. There are three types of NF: NF1, which is more
common, NF2, which initially involves tumors causing deafness and
balance problems, and Schwannomatosis, the hallmark of which is severe
pain. While not all NF patients suffer from the most severe symptoms,
all NF patients and their families live with the uncertainty of not
knowing whether they will be seriously affected because NF is a highly
variable and progressive disease.
Researchers have determined that NF is closely linked to heart
disease, learning disabilities, memory loss, cancer, brain tumors, and
other disorders including deafness, blindness and orthopedic disorders,
primarily because NF regulates important pathways common to these
disorders such as the RAS, cAMP and PAK pathways. Research on NF
therefore stands to benefit millions of Americans.
Learning Disabilities/Behavioral and Brain Function
Learning disabilities affect one-half of people with NF1. They
range from mild to severe and can impact the quality of life for those
with NF1. In recent years, research has revealed common threads between
NF1 learning disabilities, autism, and other related disabilities. New
drug interventions for learning disabilities are being developed and
will be beneficial to the general population. Research being done in
this area includes working to identify drugs that target Cyclic AMP, so
they can be paired with existing drugs targeting RAS. Identification of
new drug combinations may benefit people with multiple types of
learning disabilities.
Bone Repair
At least a quarter of children with NF1 have abnormal bone growth
in any part of the skeleton. In the legs, the long bones are weak,
prone to fracture and unable to heal properly; this can require
amputation at a young age. Adults with NF1 also have low bone mineral
density, placing them at risk of skeletal weakness and injury. Research
currently being done to understand bone biology and repair will pave
the way for new strategies to enhancing bone health and facilitating
repair.
Pain Management
Severe pain is a central feature of Schwannomatosis, and
significantly impacts quality of life. Understanding what causes pain,
and how it could be treated, has been a fast-moving area of NF research
over the past few years. Pain management is a challenging area of
research and new approaches are highly sought after.
Nerve Regeneration
NF often requires surgical removal of nerve tumors, which can lead
to nerve paralysis and loss of function. Understanding the changes that
occur in a nerve after surgery, and how it might be regenerated and
functionally restored, will have significant quality of life value for
affected individuals. Light-based therapy is being tested to dissect
nerves in surgery of tumor removal. If successful it could have
applications for treating nerve damage and scarring after injury,
thereby aiding repair and functional restoration.
Cancer
NF can cause a variety of tumors to grow, which includes tumors in
the brain, spinal cord and nerves. NF affects the RAS pathway which is
implicated in 70% of all human cancers. Some of these tumor types are
benign and some are malignant, hard to treat and often fatal. Previous
studies have found a high incidence of intracranial glioblastomas and
malignant peripheral nerve sheath tumors (MPNSTs), as well as a six-
fold incidents of breast cancer compared to the general population. One
of these tumor types, malignant peripheral nerve sheath tumor (MPNST),
is a very aggressive, hard to treat and often fatal cancer. MPNSTs are
fast growing, and because the cells change as the tumor grows, they
often become resistant to individual drugs. Clinical trials are
underway to identify a drug treatment that can be widely used in MPNSTs
and other hard-to-treat tumors.
The enormous promise of NF research, and its potential to benefit
over 175 million Americans who suffer from diseases and conditions
linked to NF, has gained increased recognition from Congress and the
NIH. This is evidenced by the fact that numerous institutes are
currently supporting NF research, and NIH's total NF research portfolio
has increased from $3 million in FY1990 to an estimated $36 million in
FY2021. Given the potential offered by NF research for progress against
a range of diseases, we are hopeful that the NIH will continue to build
on the successes of this program by funding this promising research and
thereby continuing the enormous return on the taxpayers' investment.
We appreciate the Subcommittee's strong support for the National
Institutes of Health and will continue to work with you to ensure that
opportunities for major advances in NF research at the NIH are
aggressively pursued. Thank you.
[This statement was submitted by Kim Bischoff, Executive Director,
Neurofibromatosis Network.]
______
Prepared Statement of the 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 2022. 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
2022 HHS appropriations.
The NPAIHB is a tribal organization, established in 1972, under the
Indian Self-Determination and Education Assistance Act (ISDEAA), P.L.
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.
Last year, COVID-19 dramatically impacted Northwest Tribes. We are
grateful for the diligent work of our Congressional representatives in
ensuring that Tribal Nations were provided with resources, including
vaccines, to battle this pandemic. We know that working together
improved our ability 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 Committee must honor tribal sovereignty and trust and treaty
obligations as to HHS funding to Tribal Nations. For FY 2022, we ask
this Committee 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 Committee consider the important role
that Tribal Epidemiology Centers 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
2022, 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
2021. For FY 2022, 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 2022, 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 hepatitis C (HCV) prevention, treatment,
outreach and education. Tribes in the Portland Area appreciated the
$1.5 million MHAF Tribal set-aside in FY 2021. For FY 2022, 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.
centers for disease control and prevention (cdc)
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 2022, 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.
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 2022, we recommend that the Committee
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 traditional
foods and the nutritional and healing qualities of these food in a time
of crisis. 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 Committee
allocate at least $32 million in FY 2022 to the Good Health and
Wellness in Indian Country.
centers for medicare and medicaid services (cms)
Medicaid Legislative Initiative. HHS must work with Congress to
pass legislation that creates the authority for states to extend
Medicaid eligibility to all AI/AN people with household incomes up to
138% 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% FMAP 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
Committee support legislation to make Medicare telehealth flexibilities
permanent at the OMB encounter rate at I/T/U facilities, 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, and support inclusion of multiple platforms including
FaceTime, Zoom, and Skype.
Dental Health Aide Therapists Reimbursement. In Washington, tribes
have faced barriers to get the state plan amendment in Washington
approved to include dental health aide therapists (DHATs) working in
tribal health programs in the Medicaid program. The state and the
Swinomish Indian Tribal Community have petitioned the Ninth Circuit
Court of Appeals to hear an appeal on the rejection of the Washington
State Plan Amendment. Medicaid reimbursement for DHATs is critical to
supporting and expanding dental services in tribal communities. We
trust that this matter is resolved soon so tribal health programs in
Washington can be reimbursed at the OMB encounter rate for these
critical services.
health resources and services administration (hrsa)
Provider Relief Fund Uninsured Program. The COVID-19 relief
legislation packages exclude Indian Health Care Providers from
receiving reimbursement from the Provider Relief Fund Uninsured
Programs for uninsured American Indian/Alaska Native people. This
exclusion is inconsistent with national Indian policy to elevate the
health status of AI/AN people by making all resources available to the
Indian health system. We request that the Subcommittee support the
following legislative language to address this issue:
SEC. XXX. CLARIFICATION REGARDING INDIANS AND UNINSURED INDIVIDUALS.
Subsection (ss) of section 1902 of the Social Security Act (42
U.S.C. 1396a), as added by section 6004(a)(3)(C) of the Families First
Coronavirus Response Act, is amended--(ss) in paragraph (2), by
inserting ``(except Indians (as defined in section 4 of the Indian
Health Care Improvement Act (25 U.S.C. 1603)) who receive health
services funded by the Indian Health Service, shall not be treated as
enrolled in a Federal health care program for purposes of this
paragraph)'' before the period at the end.
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 Committee 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.
We recommend $60 million to support CHAP education programs and
other implementation activities.
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
2022, we recommend increased funding for the NARCH program to $20
million and request that 30% 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
Committee on FY 2022 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.\1\
---------------------------------------------------------------------------
\1\ For more information, please contact Candice Jimenez,
[email protected].
---------------------------------------------------------------------------
______
Prepared Statement of the Nursing Community Coalition
As the nation continues to address 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 investment in nursing
workforce, education, and research in Fiscal Year (FY) 2022 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), a doubling of Title
VIII funding, and at least $199.755 million for the National Institute
of Nursing Research (NINR), which aligns with the President's FY 2022
budget and is 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 education, research, practice, and regulation. Collectively, the
NCC represents Registered Nurses (RNs), Advanced Practice Registered
Nurses (APRNs),\1\ nurse leaders, students, faculty, and researchers,
as well as other nurses with advanced degrees. With more than four
million nurses throughout the country, the NCC is committed to
advancing the health of our nation through the nursing lens.\2\ The
nursing workforce is involved at every point of care, which is
exemplified by nurses' heroic work 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.
---------------------------------------------------------------------------
\1\ APRNs include certified nurse-midwives (CNMs), certified
registered nurse anesthetists (CRNAs), clinical nurse specialists
(CNSs) and nurse practitioners (NPs).
\2\ 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.
---------------------------------------------------------------------------
Providing Care to All Americans Through the Nursing Lens
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. Title VIII programs are
instrumental in bolstering and sustaining the nation's diverse nursing
pipeline by addressing all aspects of nursing workforce demand. In
fact, the Bureau of Labor Statistics projected that by 2029 demand for
RNs would increase 7%, illustrating an employment change of 221,900
nurses.\3\ Further, the demand for most APRNs is expected to grow by
45%.\4\ This is just one example on why continued and elevated
investments in Title VIII Nursing Workforce Development Programs in FY
2022 is essential and will help nurses and nursing students have the
resources to tackle our nation's health care needs, remain on the
frontlines of the COVID-19 pandemic, assist with the distribution and
administration of the vaccine, and be prepared for the public health
challenges of the future.
---------------------------------------------------------------------------
\3\ U.S. Bureau of Labor Statistics. (20). 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.
---------------------------------------------------------------------------
Funding for Title VIII is essential, but especially crucial during
public health emergencies as these programs connect patients with high-
quality nursing care in community health centers, hospitals, long-term
care facilities, local and state health departments, schools,
workplaces, and patients' homes. A prime example of this is the Title
VIII Advanced Nursing Education (ANE) programs. ANE programs support
APRN students and nurses to practice on the frontlines and in rural and
underserved areas throughout the country. In Academic Year 2019-2020,
ANE programs supported more than 8,200 students.\5\ Of these students
directly supported by the Advanced Nursing Education Workforce (ANEW)
program, 75 percent had clinical training sites in primary care
settings, while 73 percent of Nurse Anesthetist Trainee (NAT)
recipients were trained in medically underserved areas.\6\
---------------------------------------------------------------------------
\5\ Department of Health and Human Services Fiscal Year 2022 Health
Resources and Services Administration Justification of Estimates for
Appropriations Committees. Pages 153-158. Retrieved from: https://
www.hrsa.gov/sites/default/files/hrsa/about/budget/budget-
justification-fy2022.pdf.
\6\ Department of Health and Human Services Fiscal Year 2022 Health
Resources and Services Administration Justification of Estimates for
Appropriations Committees. Pages 153-155. Retrieved from: https://
www.hrsa.gov/sites/default/files/hrsa/about/budget/budget-
justification-fy2022.pdf.
---------------------------------------------------------------------------
Together, Title VIII Nursing Workforce Development programs serve a
vital need and help to ensure that we have a robust nursing workforce
that is prepared to respond to public health threats and ensure the
health and safety of all Americans. The Nursing Community Coalition
respectfully requests at least $530 million for the Title VIII Nursing
Workforce Development programs in FY 2022.
Improving Patient Care Through Scientific Research and Innovation
For more than thirty years, scientific endeavors funded at the
National Institute of Nursing Research (NINR) have been essential to
advancing the health of individuals, families, and communities.
Rigorous inquiry and research are indispensable when responding to the
ever-changing healthcare landscape and healthcare emergencies, such as
COVID-19. From precision genomics to palliative care and wellness
research to patient self-management, NINR has been at the forefront of
evidence driven research to improve care.\7\ It is imperative that we
continue to support this necessary scientific research, which is why
the Nursing Community Coalition respectfully requests at least $199.755
million for the NINR in FY 2022.
---------------------------------------------------------------------------
\7\ National Institutes of Health, National Institute of Nursing
Research. The NINR Strategic Plan: Advancing Science, Improving Lives.
Pages 4, 10 Retrieved from https://www.ninr.nih.gov/sites/
www.ninr.nih.gov/files/NINR_StratPlan2016_reduced.pdf.
---------------------------------------------------------------------------
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.
60 Members of the Nursing Community Coalition Submitting this Testimony
Academy of Medical-Surgical Nurses
American Academy of Ambulatory Care Nursing
Academy of Neonatal Nursing
American Academy of Nursing
American Association of Colleges of Nursing
American Association of Critical-Care Nurses
American Association of Heart Failure Nurses
American Association of Neuroscience Nurses
American Association of Nurse Anesthetists
American Association of Nurse 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 Pediatric Surgical Nurses Association, Inc.
American Public Health Association, Public Health Nursing Section
American Psychiatric Nurses Association
American Society for Pain Management Nursing
American Society of PeriAnesthesia Nurses
Association for Radiologic and Imaging Nursing
Association of Community Health Nursing Educators
Association of Nurses in AIDS Care
Association of Pediatric Hematology/Oncology Nurses
Association of periOperative Registered Nurses
Association of Public Health Nurses
Association of Rehabilitation Nurses
Association of Veterans Affairs Nurse Anesthetists
Association of Women's Health, Obstetric and Neonatal Nurses
Chi Eta Phi Sorority, Incorporated
Commissioned Officers Association of the U.S. Public Health Service
Dermatology Nurses' Association
Emergency Nurses Association
Friends of the National Institute of Nursing Research
Gerontological Advanced Practice Nurses Association
Hospice and Palliative Nurses Association
Infusion Nurses Society
International Association of Forensic Nurses
International Society of Psychiatric-Mental Health Nurses
National Association of Clinical Nurse Specialists
National Association of Hispanic Nurses
National Association of Neonatal Nurse Practitioners
National Association of Neonatal Nurses
National Association of Nurse Practitioners in Women's Health
National Association of Pediatric Nurse Practitioners
National Association of School Nurses
National Black Nurses Association
National Council of State Boards of Nursing
National League for Nursing
National Nurse-Led Care Consortium
National Organization of Nurse Practitioner Faculties
Nurses Organization of Veterans Affairs
Oncology Nursing Society
Organization for Associate Degree Nursing
Pediatric Endocrinology Nursing Society
Preventive Cardiovascular Nurses Association
Society of Pediatric Nurses
Society of Urologic Nurses and Associates
Wound, Ostomy, and Continence Nurses Society
[This statement was submitted by Rachel Stevenson, Executive
Director, Nursing Community Coalition.]
______
Prepared Statement of the Nutrition & Medical Foods Coalition
summary of fiscal year 2022 appropriations recommendations
_______________________________________________________________________
--NMFC joins the research and patient advocacy community in
requesting $46.1 billion in discretionary funding for the
National Institutes of Health (NIH), an increase of $3.2
billion over FY 2021.
--Further, NMFC requests proportionate increases for all NIH
Institutes and Centers, including the Office of the
Director (which now houses the Office of Nutrition
Research), to reflect the vast array of applications for
medical foods and nutrition to address a variety of health
conditions through ongoing scientific inquiry and
advancement.
--The Coalition joins the broader public health community in
requesting $10 billion in overall funding for the Centers for
Disease Control and Prevention (CDC) to reinvigorate meaningful
professional education, public awareness, and public health
activities.
--The community encourages ongoing outreach through the annual
appropriations process to address systemic (and often
arbitrary) barriers that obstruct proper patient access to
medical foods including directing HHS and FDA to administer
public health programs and regulations where medical foods are
classified as prescription medical products intended for the
dietary management of unmet needs.
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, and distinguished Members
of the Subcommittee: thank you for the opportunity to submit testimony
on behalf of the Nutrition and Medical Foods Coalition (NMFC). We
strongly support emerging efforts to modernize the medical foods
category and enhance patient access, such as establishing the Office of
Nutrition Research within the Office of the NIH Director, and the 2018
National Academies workshop on distinct nutritional requirements. As
you work with your colleagues on appropriations for FY 2022, please
continue to invest in medical research and public health programs to
improve coverage and access for patients in need of medical foods.
Medical foods provide important clinical product alternatives when
drugs are not effective or well tolerated. Consistent with the
establishment of the medical foods regulatory category in the Orphan
Drug Act amendments of 1988, increasing medical research and expanding
the reimbursement of medical food products from the hospital-only
environment to retail pharmacies through Medicare, Medicaid, TRICARE,
and medical insurance for federal employees, would enable the use of
medical foods to address unmet medical needs and support scientific
innovation providing clinical options to physicians as they work to
manage national public health issues such as the Opioid Crisis, genetic
disorders, and the increasing incidences of chronic diseases and
conditions associated with aging like depression, osteoarthritis, IBS,
and Alzheimer's. This could, in-turn, manage disease progression and
lower national healthcare costs. Thank you for your time and please
consider the Coalition a resource.
about the 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.
The Coalition actively supports legislative efforts to address
coverage and access, such as the Patient Access to Medical Foods Act
(H.R. 56), Medical Nutrition Equity Act, and similar legislation. In
this regard, NMFC calls on legislators to ensure that any updates to
medical foods coverage:
--Maintains the integrity of the current (aforementioned) definition
for the category.
--Does not arbitrarily carve out specific patient communities for
coverage while leaving other communities (including patients
without digestive or metabolic disorders) behind.
--Provides comprehensive coverage and adequate access to facilitate
reasonable outpatient access to medical foods so there is
health insurance pharmacy reimbursement in addition to
historical access that exists through hospitals.
Moving forward, federal medical research and public health programs
can play a key role in informing coverage and access updates while
educating patients and providers about innovative (often cost-
effective) healthcare options.
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.''
Currently, patients in need of medical foods face significant
coverage and access barriers often stemming from a lack of awareness of
these products and their unique role in the healthcare system.
Reimbursement access is grounded in federal and private insurance
pharmacy benefit plans often categorically denying coverage of medical
foods through pharmacies as a policy matter while they generally
reimburse under medical benefits in hospitals. This often results in
patients being denied access to nutritional therapies which are
necessary alternatives to drugs that are ineffective or not well
tolerated. The Food and Drug Administration (FDA) regularly intervenes
to provide guidance on medical foods, including through a recent
episode where products were mislabeled as Over-The-Counter on massive
level, but these interventions are inconsistent at best and often do
not resolve underlying coverage issues.
perspective of cindy steinberg, us pain foundation
One example of important innovation in medical foods is in the area
of chronic pain, a highly prevalent yet challenging condition to treat.
The CDC has reported that 19.6 million Americans live with high-impact
chronic pain resulting from a multitude of serious diseases, conditions
and injuries that affects their ability to function on a daily basis.
Indeed, chronic pain is the number one cause of disability in the US
and globally.
There are few truly effective treatment options and most of these
come with difficult side effects, safety concerns or other risks.
Opioids do help some with severe pain but carry significant risks when
diverted to those with substance abuse disorder. Non-steroidal anti-
inflammatory (NSAIDs) medications are widely prescribed but, due to
risks of heart attack, stroke and gastrointestinal bleeding are
contraindicated for many, especially those with multiple chronic
conditions. Acetaminophen has limitations due to insufficient pain
relief and liver damage at doses high enough to alleviate serious pain
for some. Moreover, federal agencies and the broader stakeholder
community have been actively working over recent years to identify non-
opioid options for pain management.
Medical foods have been found to fill a need for pain relief for
individuals with certain chronic conditions such as osteoarthritis.
Medical foods are generally safe products that can address conditions
such as pain without causing other side effects. Distinct from both
drugs and supplements, medical foods must be used under the supervision
of a medical professional. Lack of awareness about medical foods as an
emerging, cost-effective treatment option for certain pain conditions
amongst healthcare providers and insurers have limited their use.
Improving research and coverage for medical foods would offer patients
another option, particularly those with multiple chronic conditions and
unmet medical needs.
Recommendation:
Please include timely committee recommendations on medical foods
research at NIH, like the example below, to sustain progress in this
area. Please also work with your colleagues to engage HHS in a
productive dialogue and otherwise seek out opportunities to improve
coverage and access for patients in need of reliable access to medical
foods. Thank you for your time and for your consideration of our
request.
recommended report language
national institutes of health
office of the director
Office of Nutrition Research [ONR].--The Committee applauds NIH for
recent efforts to move the Office of Nutrition Research to the Office
of the Director in recognition of the fact that scientific progress in
nutrition and medical foods now has applications to a variety of health
topics and conditions beyond diet and metabolism. NIH is encouraged to
continue to advance cross-cutting research through ONR, including
timely applications for a variety of conditions, such as innovative
strategies and alternative therapeutic products for pain management.
[This statement was submitted by P. Keith Daigle, Acting Director,
Nutrition & Medical Foods Coalition.]
______
Prepared Statement of One Voice Against Cancer
One Voice Against Cancer (OVAC) is a broad coalition of public
interest groups representing millions of cancer patients, researchers,
providers, survivors, and their families, delivering a unified message
to Congress and the White House on the need for increased funding for
cancer research and prevention priorities.
2021 is the 50th Anniversary of the National Cancer Act and it
provides a unique opportunity to renew the country's commitment and
bring new urgency to the fight against cancer. Although we have made
much progress against cancer in the past half-century, more funding is
needed to meet the overwhelming demand for research grants at the
National Cancer Institute (NCI), address cancer health disparities, and
mitigate the impacts of COVID-19 on cancer research, clinical trials,
and patient screenings and treatment. For fiscal year (FY) 2022, we are
asking that Congress fund the National Institutes of Health (NIH) at
$46.111 billion, including $7.6 billion for the NCI. We are also asking
that the Centers for Disease Control and Prevention's (CDC) Division of
Cancer Prevention and Control (DCPC) receive $559 million.
There is much to celebrate in the fight against the hundreds of
diseases we call ``cancer.'' The cancer death rate rose during most of
the 20th century, but federal investments in cancer research and
prevention have resulted in a continuous decline in the cancer death
rate since its peak in 1991. From 1991 to 2018, the cancer death rate
fell 31 percent. However, cancer is still the second most common cause
of death in men and women in the U.S. In 2021, almost 1.9 million new
cancer cases will be diagnosed, and more than 600,000 people will die
from cancer. Approximately $183 billion was spent in the U.S. on cancer
related health care in 2015, and this amount is projected to grow to
$246 billion by 2030-an increase of 34 percent.
Cancer is a disease that affects everyone, but it doesn't affect
everyone equally. A close look at cancer incidence and mortality
statistics reveals that certain groups, such as African Americans,
Asian Americans, Hispanics/Latinos, Native Americans, Alaska Natives,
Native Hawaiians/Pacific Islanders, and rural populations are more
likely than the general population to suffer from cancer and its
associated effects, including premature death. For instance, the death
rate for Black men with prostate cancer is more than double that of men
in every other population. Black women have a 40 percent higher breast
cancer death rate than white women, even though their diagnosis rates
are slightly lower.
There are still some cancers for which survival rates are dismally
low with few, if any, effective treatments. In 2021, approximately 44
percent of patients will be diagnosed with a cancer that has a five-
year survival rate below 50 percent. Research is critical so we can
develop additional treatments and tools to ensure more Americans
survive a cancer diagnosis.
Additionally, the NCI reports that we may see a rise in cancer
mortality rates for the first time in almost 30 years because of the
impacts from COVID-19. The COVID-19 pandemic has led to reduced access
to care for cancer patients, including delays in cancer screening,
diagnosis, and treatment. These delays will likely lead to a rise in
late-stage diagnoses and cancer deaths in the years to come.
For the last 50 years, every major medical breakthrough in cancer
can be traced back to the NIH and NCI. We know that investment in
research at the NIH and NCI leads to lives saved. Additionally, more
than 80 percent of federal funding for the NIH and NCI is spent on
biomedical research projects at research facilities across the country.
In FY 2020, the NIH provided over $34.6 billion in extramural research
to scientists in all 50 states and the District of Columbia. NIH
research funding also supported more than 536,000 jobs and more than
$91 billion in economic activity last year.
COVID-19 and Cancer Research and Clinical Trials:
The Committee should be aware of the ongoing impact of COVID-19 on
the cancer research ecosystem, including clinical trials. Thousands of
researchers working on new discoveries that may one day alter the way
we treat cancer had their projects disrupted, leading to increased
costs and in some cases, having to restart research projects, losing
data and productivity in the process.
COVID-19 has had serious consequences for cancer clinical trials,
which play a pivotal role in advancing cancer care and treatment. The
results of clinical trials and the broader drug development process can
take years to realize, meaning that without aggressive measures to
mitigate the impact, the full effect of these disruptions on
therapeutic innovation in cancer care is likely to be felt for years to
come. Not only are cancer clinical trials critical in the over-all
research and progress against the disease, for individual cancer
patients, clinical trials often provide the best, and sometimes only,
treatment option available.
We therefore urge Congress to provide the NIH with at least $10
billion to restore the research ecosystem so we can continue to make
progress in the fight against cancer and other diseases. We hope that
members of the Subcommittee can work with their colleagues to ensure
this issue is addressed outside the usual appropriations process.
ARPA-H:
We understand that President Biden has called for the creation of
an Advanced Research Projects Agency-Health (ARPA-H) as a key component
to ``drive transformational innovation in health research'' to deliver
cures for cancer and other diseases. Based upon available information,
the initiative is likely to have twin focus areas: transformation of
research and speeding application and implementation of breakthroughs
in health care, where the current model has failed to deliver medical
advancements. The President has spoken about the initiative and has
included a $6.5 billion proposal in the his FY2022 budget, but few
other details have emerged.
We in the cancer community are excited by a new initiative that
focuses separate and additional resources on the development of new
diagnostics, treatments, and even cures for cancer. However, we also
know that clinical advances for patients have to be built on a broad
foundation of basic scientific understanding.
Therefore, OVAC recommends that funding for ARPA-H remain separate
from the established research enterprise and that Congress works to
ensure that base funding for cancer research at the NCI is increased at
a sustained, appropriate rate that ensures the pace of discovery is
maintained.
OVAC Priorities for Fiscal Year 2022:
The NCI is currently experiencing a demand for research funding
that is far beyond that of any other Institute or Center (IC). Between
FY 2013 and FY 2019, the most recent year for which data are available,
the number of Research Project Grant (R01) applications to NCI rose by
50.6 percent. For all other ICs during that time, the number of R01
applications rose by just 5.6 percent.
As a result of this extraordinary demand from the scientific
community, the RPG success rate at NCI dropped from 13.7 percent in FY
2013 to 11.6 percent in FY 2019. This is a situation unique to NCI, at
a time when cancer researchers are making historic advances in new
treatments and therapies. The overall success rate for NIH during that
same period rose from 16.8 percent to 21.2 percent.
Thanks to bipartisan, bicameral leadership, Congress has increased
funding for NIH by $12.9 billion over the past six years. We are
especially grateful that Congress has highlighted the need for
dedicated funding to address the precipitous decline in the success
rate for R01 applications at NCI. Significant, sustained funding
increases for NCI are essential to raising the R01 success rate and
ensuring progress in the fight against cancer continues.
Therefore, OVAC recommends at least $46.111 billion for NIH in FY
2022, a $3.177 billion increase over the comparable FY 2021 funding
level, which would allow the NIH's base budget to keep pace with the
biomedical research and development price index and provide meaningful
growth of 5 percent. For NCI, we recommend $7.609 billion, the amount
proposed by NCI in its FY 2022 professional judgment budget.
Preventing cancer is also critically important. About half of the
over 600,000 cancer deaths that will occur this year could be averted
through the application of existing cancer control interventions. The
CDC's DCPC provides key resources to states and communities to prevent
cancer by ensuring that at-risk, low-income communities have access to
vital cancer prevention programs.
COVID-19's impact on screening and the early-detection of cancer
will exacerbate current barriers to cancer prevention and early
detection strategies, potentially increasing disparities in overall
cancer outcomes. Additionally, addressing the backlog of cancer
screenings for those without adequate health coverage will place a new
burden on existing cancer screening programs, which have long been
underfunded. CDC's programs help ensure that Americans have options for
cancer screening regardless of income or insurance status. Increased
investment in the equitable application of existing cancer control
interventions as spearheaded by CDC's DCPC will accelerate progress in
the fight against cancer. For this reason, OVAC recommends $559 million
overall for DCPC, an increase of $173.1 million over the FY 2021 level.
Once again, thank you for your continued leadership on funding
issues important in the fight against cancer. Funding for cancer
research and prevention, survivorship, and must continue to be top
budget priorities in order to increase the pace of progress in the
fight against cancer.
Below please find an overview of OVAC's program level requests in
the Labor-HHS bill:
National Institutes of Health (NIH)--$46.111 billion, including:
--National Cancer Institute (NCI): $7.609 billion
--National Institute on Minority Health and Health Disparities
(NIMHD): $419.8 million
--National Institute on Nursing Research (NINR): $187.9 million
Centers for Disease Control and Prevention (CDC) Cancer Programs--
$559 million, including:
--National Comprehensive Cancer Control Program: $50 million
--National Program of Cancer Registries: $70 million
--National Breast and Cervical Cancer Early Detection Program: $275
million
--Colorectal Cancer Control Program: $70 million
--National Skin Cancer Prevention Education Program: $5 million
--Prostate Cancer Awareness Campaign: $35 million
--Ovarian Cancer Control Initiative: $13 million
--Gynecologic Cancer and Education and Awareness (Johanna's Law): $15
million
--Cancer Survivorship Resource Center: $900,000
Health Resources and Services Administration (HRSA)
--Title VIII Nursing Programs: $270 million
______
Prepared Statement of the Pandemic Action Network
On behalf of the Pandemic Action Network--a network of over 100
organizations that work together to drive collective action to help
bring an end to COVID-19 and ensure the world is prepared for the next
pandemic--I am pleased to offer testimony for Fiscal Year 2022 Labor,
Health, and Human Services Appropriations.
To ensure the United States heeds the lessons learned from COVID-19
and helps ensure the world sustainably prioritizes and invests in
pandemic preparedness, we respectfully urge you to increase funding to
the U.S. Centers for Disease Control and Prevention (CDC) overall and
bolster its critical role in promoting global health security; support
permanent, dedicated funding for the Biological Advanced Research and
Development Authority's (BARDA) work in emerging infectious diseases;
and ensure the U.S. government contributes to global R&D efforts by
strengthening the Coalition for Preparedness Innovations (CEPI).
Specifically, Pandemic Action Network calls on the Committee to
prioritize the following investments for FY22:
--No less than $456.4m for CDC's Center for Global Health Division of
Global Public Health Protection and $226m for the Global
Immunization Division;
--No less than $10m for CDC's Global Water, Sanitation & Hygiene
program;
--No less than $735m for CDC's Center for Emerging Zoonotic and
Infectious Diseases;
--No less than $300m in CDC's Infectious Disease Rapid Response Fund
--No less than $300m for BARDA's work on Emerging Infectious Diseases
--No less than $200 million support US investment in and partnership
with the Coalition for Epidemic Preparedness Innovation (CEPI),
in collaboration with BARDA
The COVID-19 pandemic has laid bare the grave health and socio-
economic consequences of repeated failures to prioritize and invest in
health security and pandemic preparedness both at home and abroad. The
pandemic has already cost over 580,000 lives in the United States and
3.4 million around the world. The International Monetary Fund projects
it will cost the global economy at least $22 trillion. While
vaccination efforts have begun to dramatically reduce COVID-19
transmission in the U.S., the pandemic continues to spread globally as
a majority of the world's population still lacks access to vaccines and
other lifesaving tools and new variants of the virus continue to
emerge. Until the virus is controlled around the world, Americans will
not be safe and our domestic recovery will continue to stall.
The COVID-19 pandemic was an avoidable disaster. Partners in our
network and infectious disease experts had been warning for decades of
the threat of a fast-moving respiratory virus pandemic. Yet a
persistent culture of panic and neglect, has prevented forward-looking
and long-term investments in global health security. U.S. leadership
and international cooperation is essential both to end this pandemic
and to prepare for the next one. CDC, BARDA, and other agencies across
the Department of Health and Human Services have a critical role to
play to keep both Americans and the world safe--but they must be
appropriately, and sustainably, resourced. The Pandemic Action Network
urges this committee and Congress to break this dangerous cycle once
and for all and commit to increased--and sustained--investments in
pandemic preparedness in Fiscal Year 2022 and beyond.
CDC:
The CDC comprises an essential piece of the U.S. and global health
security architecture--by serving as the steward of U.S. public health
and by partnering with countries to build and maintain their capacities
to detect, prevent, and respond to emerging disease threats.
The Division of Global Public Health Protection (DGHP) works to
protect Americans from dangerous health threats around the world and
has been vital in the global fight against COVID-19. Graduates of its
Field Epidemiology Training Program, a program to train disease
detectives around the world, have been supporting COVID-19 responses in
their countries through disease detection and rapid response, as well
as data analysis, contact tracing, and community outreach. DGHP's
Global Rapid Response Team has deployed more than 500 deployments for a
total of nearly 16,000 person-days, to assist with COVID-19 emergency
response at home and abroad. In a world where pandemic threats are
growing in frequency, this critical work needs to be resourced and
upscaled.
Many other divisions and programs within CDC are also critical to
fighting deadly outbreaks and strengthening global health security,
including the Global Immunization Division of the Center for Global
Health, the Global Water, Sanitation & Hygiene program, the Center for
Emerging Zoonotic and Infectious Diseases, and the Infectious Disease
Rapid Response Fund. All have been routinely underfunded relative to
their vital roles in protecting American and global health and deserve
funding commensurate with their increasing demand and value.
BARDA:
BARDA has been playing an important and unmatched role in
accelerating the development of medical countermeasures for emerging
infectious diseases, including for Ebola, Zika, and pandemic influenza.
The authority partners with industry on late-stage research and
development, bridging the ``valley of death'' between clinical research
and product development to translate basic science into urgently needed
medical tools and technologies--where few entities operate.
Yet BARDA's work to combat COVID-19 and advance innovations for
other emerging and neglected infectious diseases has largely been
financed through emergency supplemental funding. This means that only
when a disease crisis strikes does BARDA get the go-ahead and funding
to advance countermeasures. Decades of research in health R&D laid the
groundwork for the accelerated COVID-19 vaccine development--and
humanity was lucky that we could build on progress in SARS and mRNA
platforms. Emergency, surge funding is not a viable solution for
pandemic prevention or preparedness: in many cases it is not even a
solution for pandemic response. Annual, targeted funding for emerging
infectious disease R&D will enable BARDA to work proactively to counter
infectious disease threats so that we are prepared, and not caught flat
footed when the next dangerous outbreak happens.
CEPI:
This Committee should also prioritize BARDA's partnership with
CEPI, which has played a critical role in the COVID-19 response.
Scientific partnership, collaboration, and resource sharing between
BARDA and CEPI is critical to leverage their respective strengths and
resources, and to promote the development of infectious diseases tools
that can be rapidly deployed in a diverse array of settings. The U.S.
should be a leading partner in supporting CEPI's new five-year plan of
action with an annual appropriation of at least $200 million.
Just as the U.S. military is routinely resourced and prepared to
fight a current war while getting ready for the next one, so too should
Congress ensure that our civilian health infrastructure is equipped to
fight this pandemic and prepare for the next one. We should commit the
funds necessary to deploy a robust global response to the evolving
COVID-19 pandemic while simultaneously make strong, sustainable, and
ultimately cost-effective investments in future pandemic preparedness
and prevention--lest we risk repeating the cycle of panic and neglect
that spawned this protracted global emergency. Additional and sustained
investments in CDC, BARDA, and CEPI are vital to America's health and
security and warrant Congress's strong and unwavering support.
______
Prepared Statement of PATH
This testimony is submitted by Jenny Blair on behalf of PATH, an
international nonprofit organization that drives transformative
innovation to save lives and improve health in low- and middle-income
countries. PATH is appreciative of the opportunity afforded by
Chairwoman Murray, Ranking Member Blunt, and members of the
Subcommittee on Labor, Health and Human Services, Education, and
Related Agencies to submit written testimony regarding fiscal year (FY)
2022 funding for global health programs within the US Department of
Health and Human Services (HHS). PATH acknowledges and appreciates the
strong leadership the Committee has shown in supporting HHS' work in
this area--especially given the current pandemic--and we recommend that
support continue. Therefore, we respectfully request that this
Subcommittee provide no less than the FY21 enacted level of $593
million to the Center for Global Heath (CGH) at the Center for Disease
Control and Prevention (CDC) to sustain programming and replenish funds
that have been diverted for the COVID-19 response that were intended
for global immunization, malaria, global health security, and research
and development (R&D). Within CGH, we specifically support increases
for CDC's Division of Global Health Protection, which should be
increased from $203.2 million to at least $456.4 million to bolster
capacity to prevent, detect, and rapidly respond to emerging diseases--
including the current COVID-19 pandemic--in low- and middle-income
countries. We also support an additional $300 million for the
Infectious Disease Rapid Response Fund, $30 million for CGH's Division
of Parasitic Diseases and Malaria, and $271.1 million for the Global
Immunization Division--of which $211.2 million should allocated to
polio eradication and $60 million for measles. This funding allows CDC
to save lives, reduce disease, prevent and detect future pandemics, and
improve health around the world.
The Vital Role of HHS in Global Health and Security
PATH applauds Congressional appropriators for the global health
funding that has been provided in four supplementals--the Coronavirus
Preparedness and Response Supplemental, the CARES Act, the Coronavirus
Response and Relief Supplemental Appropriations Act of 2021, and the
American Rescue Plan Act of 2021--over the last year. COVID-19 has
reached every country in the world, crippling economies, overwhelming
health care systems, filling hospitals, dwindling supplies, and
emptying public spaces. While we are beginning to see the end of the
pandemic here in the United States, countries such as India and Brazil
are still heavily impacted. With the potential for emergence of
vaccine-evading strains, COVID-19 will continue to threaten global
health security as long as it is uncontrolled anywhere in the world.
Investments that help contain diseases at the source are some of
the most effective and important the US government can make. US
investments through the CDC have been used to train epidemiologists,
engage affected communities, improve disease detection and tracking
systems, build Emergency Operations Centers (EOCs), and upgrade
laboratories. Such efforts have allowed partner countries to greatly
shorten their response times to outbreaks and epidemics--for example,
enabling Cameroon to shorten its response timeline from 8 weeks to 24
hours. Many of the US's partner countries have deployed these systems
for their COVID-19 response.
The ongoing threat that COVID-19 and other infectious diseases pose
to the health, economic security, and national security of the United
States demands dedicated and steady funding for global health security.
We must invest not only to end the current pandemic, but also to ensure
that we are better prepared for the next one.
Protecting the US Through Leadership in Global Health Research and
Development
The ongoing COVID-19 pandemic is a clear call for investment in
America's capacity to rapidly develop and deploy new technologies that
can prevent, detect, and treat emerging global health threats. The US
leads the world in R&D for tools that solve some of humanity's most
pressing health problems. The annual G-Finder report from Policy Cures
Research estimates that in 2018, the US contributed $1.718 billion
through the National Institutes of Health (NIH) and $30 million through
CDC toward the development of global health products.
In the current pandemic, support through NIH and the Biomedical
Advanced Research and Development Authority (BARDA) helped speed the
development and manufacturing of vaccines to prevent COVID-19,
including through partnerships Janssen Research & Development, part of
Johnson & Johnson, as well as Moderna. Under Operation Warp Speed,
BARDA pivoted existing programs for pandemic influenza and other
threats to accelerate the development of new vaccines, therapeutics,
and diagnostic tests.
However, as a nation we have failed to sustain investment in a
suite of technologies that will help us respond to the disease threats
most likely to impact Americans and populations around the globe. For
example, development of a promising SARS vaccine was halted in 2016 due
to lack of funding--only to be re-started after the spread of COVID-19.
Congress must ensure that the US is making sustained smart investments
for just-in-case development and just-in-time delivery of the tools we
will need for the most likely threats to human health.
Today more than ever, the US is at the forefront of global health
innovation because of long-term investment in NIH, CDC, and BARDA. To
accelerate progress toward lifesaving tools for a range of health
threats, we call for: maintaining robust funding for NIH and
particularly for the National Institute of Allergy and Infectious
Diseases (NIAID) and the Fogarty International Center; providing
funding to match CDC's increased responsibilities in global health and
security for the Center for Global Health and the National Center for
Emerging Zoonotic and Infectious Diseases; and supporting BARDA's work
in emerging infectious diseases.
As a complement to continued investment in BARDA and NIH, the US
should invest in the Coalition for Epidemic Preparedness Innovations
(CEPI) which is working to advance at least twelve COVID-19 vaccine
candidates. Investment in CEPI would allow the US to leverage funding
from other global donors and ensure the US can influence the impact and
outcome of CEPI's efforts. A US contribution to CEPI would leverage the
contributions of other donors to increase overall pandemic preparedness
and response effectiveness, including the potential to help increase
the effectiveness of vaccines already being used in the United States.
Successful implementation of these components requires urgent
coordination across agencies and strategic investments. Congress should
monitor progress on investments in emerging technologies and medical
countermeasures, as well as the integration of R&D into federal
planning including facilitating policies and incentives across
interagency R&D efforts.
Immunization Programs During COVID-19 and Beyond
HHS is also achieving complementary global health and security
goals through investment in immunization, with most vaccine delivery
activities overseen by CDC's Global Immunization Division. Vaccines are
among the most high-impact and cost-effective tools available today to
combat infectious disease threats; many vaccine-preventable diseases
were once global pandemics much like COVID-19. This pandemic is a stark
reminder of how fast an outbreak can spread without a vaccine to
protect us. Thanks to immunization, outbreaks of childhood diseases
such as polio, measles, diphtheria, and pertussis are preventable, and
communities are protected from some of the most infectious and lethal
pathogens.
Immunization programs prevent an estimated 2.5 million deaths each
year among children under the age of five worldwide; these programs
also bolster local health systems and enable better disease detection.
However, the COVID-19 pandemic has severely disrupted global
immunization programs and continues to threaten achievement of critical
global goals, such as polio eradication. Of the 129 countries able to
report routine immunization data at the outset of the pandemic last
year, over half reported moderate to total disruption of immunization
services. Of the 26 countries that were forced to suspend measles
immunization campaigns due to the pandemic, 18 reported measles
outbreaks by July of last year, according to data available in November
2020. Suspended campaigns put 94 million people at risk of missing
measles vaccinations in 2020. The Global Measles and Rubella Laboratory
Network (M&RI), for example, has been repurposed to provide laboratory
space, equipment, staff, and reagents for COVID-19 diagnostic testing,
and measles immunization staff supported by M&RI are being called on to
support COVID-19 responses in many vulnerable countries. These same
systems and infrastructure will be essential to ensuring COVID-19
vaccines are distributed equitably.
Even before the COVID-19 pandemic, vaccines for measles, polio, and
other diseases were out of reach, on an annual basis, for 20 million
children under the age of one. Worldwide, more than 10 million children
below the age of one do not receive any vaccines at all, many of whom
live in countries with weak health systems. Given these difficulties,
the disruption to immunization programs caused by COVID-19 could leave
pathways open to disastrous outbreaks in 2020 and future years and will
increase imported cases of measles and other vaccine preventable
diseases into the US. As health care continues to be disrupted
globally, maintaining strong US support for global vaccination
efforts--including key goals such as polio eradication, which we are on
the brink of achieving--is critical to preventing needless deaths.
Fighting to Eliminate Malaria
The CDC plays a critical role in the fight against malaria, as co-
implementer of the President's Malaria Initiative (PMI)--alongside the
US Agency for International Development--as well as through its
Parasitic Diseases and Malaria program. These programs provide crucial
technical assistance, with a focus on monitoring, evaluation, and
surveillance, as well as operational and implementation research,
including serving as an evaluation partner in the large-scale pilot
implementation of the RTS,S malaria vaccine in Kenya (one of three
African countries involved). Malaria prevention and treatment programs
have prevented more than seven million deaths globally since 2000.
Sustained US commitment made this progress possible.
The World Health Organization estimates that nearly half the
world's population lives in areas at risk of malaria-there were an
estimated 229 million cases and 409,000 deaths from the disease in 2019
alone. Disruptions of essential health services due to the COVID-19
pandemic are having a catastrophic impact on the most vulnerable
communities worldwide, threatening our progress against malaria.
According to the Global Fund, in Africa malaria diagnosis and treatment
has fallen roughly 15 percent during the pandemic and more than 20
percent of facilities have reported stockouts of medicines for treating
children under five. In Asia, diagnosis and treatment has fallen almost
60 percent due to COVID-19, and 37 percent of facilities have reported
COVID-19 infections amongst their health workers.
To reduce the pressure that COVID-19 is exerting on health systems,
it is critical that we continue to deliver malaria interventions at the
community level. As PMI has expanded, CDC's mandate has grown, but its
budget for malaria has remained stagnant. In FY 2022, Congress should
fully fund PMI and increase funding for the CDC Division of Parasitic
Diseases and Malaria (DPDM) program from $26 million to $30 million, to
better track, treat, and test for malaria, and to ensure these services
continue in the midst of a global health crisis.
An Investment in Health, at Home and Around the World
With strong funding for global health programs within HHS, the
department will be able to improve access to proven health
interventions in the communities where they are needed most, as well as
respond to the ongoing threat of COVID-19. By fully funding global
health and BARDA accounts, the US can prevent the further spread of
disease, protect the health of Americans, and minimize the impact of
COVID-19 on vulnerable populations worldwide.
[This statement was submitted by Jenny Blair, Manager, US & Global
Policy and Advocacy, PATH.]
______
Prepared Statement of Patient Services, Inc.
summary of fiscal year 2022 appropriations recommendations
_______________________________________________________________________
PSI joins the broader patient advocacy community in requesting:
--$46.1 billion in discretionary funding for the National Institutes
of Health (NIH), an increase of $3.2 billion over FY 2021.
--Please provide proportional funding increases for the various NIH
Institutes and Centers to expand and advance condition-
specific research portfolios.
--$10 billion in overall funding for the Centers for Disease Control
and Prevention (CDC) to bolster public health activities.
--Please provide the new CDC Chronic Disease Education and
Awareness Program with $5 million, an increase of $3.5
million over FY 2021, to further advance and expand timely
public health efforts with community stakeholders.
--$9.2 billion for the Health Resources and Services Administration
(HRSA) and $500 million for the Agency for Healthcare Research
and Quality (AHRQ).
--PSI joins the broader patient advocacy community in requesting that
the subcommittee continue to use the annual appropriations
process, spending bills, and corresponding committee reports,
to advance efforts that improve coverage and access for
patients in need, including restoring equitable access to third
party assistance offered by reputable charities.
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, and distinguished member
of the Subcommittee, thank you for your leadership on health funding
and patient care issues. I am Gwen Cooper, and I look forward to
working with you as the CEO of PSI. We share a goal of improving the
lives of patients and families impacted by rare, chronic, and life-
threatening illness. In this regard, thank you for your ongoing efforts
to invest in medical research, public health, and patient care
programs. For FY 2022, please maintain this investment while continuing
to utilize the appropriations process to highlight systemic issues and
resolve contemporary coverage and access issues facing patients.
about psi
PSI is a national nonprofit charitable assistance program with over
30 years' experience assisting patients in obtaining healthcare
coverage and needed care and therapies. Founded by a patient for
patients, we know the challenges of chronic illness. We help pay for
medications, health insurance premiums and copays, navigate health
insurance plans, provide free legal services, and walk alongside
patients and their families through every step of their healthcare
journey. Over the last ten years, we have had the privilege of
providing over $800 million in financial assistance to help people
obtain the healthcare they so desperately need. In 2020 alone, nearly
15,000 patients from every state across the nation benefitted from $56
million in financial assistance from PSI. We are honored to do the
important work of breaking down barriers to healthcare access and
payment options so that patients with rare and chronic diseases can
focus on living their best lives.
about charitable assistance
Patient assistance charities, like PSI, primarily raise private
donations to provide health insurance premium assistance; pharmacy and
treatment costs, as well as travel, nursing and ancillary services. Our
programs help patients who are uninsured and underinsured in the
commercial market, and beneficiaries of public insurance coverage like
Medicare, Medicaid and TRICARE. PSI bridges the gaps in health coverage
for families by providing premium assistance for:
--Medicare beneficiaries for Medicare Part D plans,Medicare Advantage
plans and Medigap Plans.
--Patients during the 24-month waiting period for Medicare when
qualified for Social Security Disability.
--Patients who no longer qualify for the Medicaid program because of
age or income.
--Those who lose employer sponsored coverage through COBRA plans and
plans through the Marketplace. In 2020, over 16M Americans lost
their employer sponsored healthcare. PSI helped patients secure
new plans for coverage life-saving treatments.
When a patient turns to PSI, they often already have a doctor, and
health plan, and a course of therapy. PSI simply assists them with the
costs to maintain coverage and access, based on financial need and
other factors. For patients with life-threatening conditions, who wish
to continue working while managing their conditions, and those who do
not qualify for disability or need-based federal programs, maintaining
access to life-sustaining care is absolutely critical and few reliable
options exist without compassionate charitable assistance. Most
patients with rare and chronic diseases do not automatically quality
for disability, nor do they want to. They wish to continue living their
most productive lives through continued access to treatments required
to manage their illness.
contemporary examples of ``backdoors'' to pre-existing condition
discrimination
Third Party Payer
Center for Medicare and Medicaid Services (CMS) has discouraged
insurers from accepting payments from third party payers, including
organizations like PSI and other nonprofit patient assistance programs
(PAPs). This results in severe economic hardships for patients.
In November of 2013, CMS published a Frequently Asked Questions
(FAQ) document which discouraged health insurers from accepting
payments from third party payors on behalf of enrolled individuals.
This FAQ document was CMS' response to reported concerns, by insurers,
that accepting payments from someone other than the insured could skew
the insurance risk pool and create an unlevel field in the Exchanges.
A subsequent 2014 CMS FAQ document clarified that CMS had not
intended to discourage insurers from accepting third party premium and
cost-sharing payments from state and federal government programs,
Indian tribes, tribal organizations, and urban Indian organizations.
However, insurers were still discouraged from accepting third party
payments from any other organizations, including PAPs and other
charitable organizations, such as churches. This creates significant
barriers to care for many patients who deal with recurring costs and
chronic illnesses.
Copay Accumulators
CMS endorsed another tactic used by insurers to limit care for the
most ill (and, thus, most expensive) patients--the copayment
accumulator. A copay accumulator--or accumulator adjustment program--is
a strategy insurance companies and Pharmacy benefit Managers (PBMs) use
that stop manufacturer copay assistance coupons from counting towards a
patient's deductible and out-of-pocket maximum spending. This is like
saying a manufacturer's coupon would not lower your total grocery bill
when you use the coupon at the grocery store. These coupons help lower
the cost of medications in these scenarios: they can't afford the high
cost of the medication; they have a high deductible plan and cannot t
afford the copayment, and/or they qualify for PAP assistance but their
insurer will not accept the payment due to the CMS rule.
Because CMS has endorsed the copay accumulator mechanism, patients
often never reach their out-of-pocket maximum spending, putting other
treatment for their diseases in jeopardy.
Specialty Claim Carve-Out or Alternative Funding Model
This prescription drug procurement model improperly uses for-profit
drug manufacturers' free assistance programs to the detriment of
patients who are forced to continually switch drugs because
manufacturer assistance programs are time limited; diseases are not.
Additionally, any costs for filling the prescriptions or are not
counted toward the patient's out-of-pocket costs.
conclusion
Over previous years, appropriators have asked HHS and CMS to
explain the rationale and justifications for taking various coverage
and access actions. It would be meaningful to have the new
administration's perspective on these issues. The community would
welcome the opportunity to share their experiences and collaboratively
discuss challenges and opportunities with policymakers. In addition to
including timely committee recommendations, please consider questions
for the record and similar options to facilitate a productive
discussion with the administration on enhancing coverage and access
while Congress works on potential legislative solutions, as well. Thank
you again and please consider PSI a resource for future conversations.
[This statement was submitted by Gwen Cooper, Chief Executive
Officer, Patient Services, Inc.]
______
Prepared Statement of the Pediatric Policy Council
I write on behalf of the Pediatric Policy Council (PPC), a public
policy collaborative of the Academic Pediatric Association, the
American Pediatric Society, the Association of Medical School Pediatric
Department Chairs, and the Society for Pediatric Research. We urge the
subcommittee to provide robust investments in pediatric research and
training to support the health and well-being of children, as outlined
below. We are grateful for the investments Congress has made in these
areas in recent years, as evidenced in particular through enhanced
support for the National Institutes of Health (NIH) and other key
pediatric research priorities, and hope you will support sustained
increases in pediatric research and training priorities to enable the
next generation of scientific discoveries to benefit child health.
Fiscal Year (FY) 2022 Funding Priorities:
--National Institutes of Health: $46.1 billion
--Eunice Kennedy Shriver National Institute of Child Health and Human
Development: $1.7 billion
--Pediatric Subspecialty Loan Repayment Program: $50 million
--Gun Violence Prevention Research: $50 million split evenly between
NIH and CDC
--Agency for Healthcare Research and Quality: $500 million
--Children's Hospital Graduate Medical Education: $485 million
National Institutes of Health (NIH):
Biomedical research is key to improving child health and well-being
through new cures for pediatric conditions and a deeper understanding
of children's unique biology. Research funded by the NIH has made
significant strides toward treating and preventing chronic diseases,
many of which have their roots in childhood. This work has led to new
therapies, vaccines, and diagnostic tests that have improved the lives
of millions of people worldwide. Pediatric research has yielded
groundbreaking treatments for deadly chronic diseases, saved the lives
of premature babies, and even cured some common childhood cancers. NIH
funding also helps fund the development of physician scientists through
loan repayment and research training awards. The COVID-19 pandemic has
only further underscored the importance of the federal investment in
biomedical research, which was crucial in developing the scientific
knowledge and infrastructure to rapidly study the novel coronavirus in
children and adults and to develop needed medical interventions like
immunizations that will be key to ending the pandemic.
We urge a funding level for NIH of no less than $46.1 billion in FY
2022, a $3.2 billion increase over the agency's FY 2021 level. Within
the overall FY 2022 funding for the NIH, we request $1.7 billion for
the Eunice Kennedy Shriver National Institute of Child Health and Human
Development (NICHD)--the single largest funder of pediatric research
within the NIH and a key leader in coordinating and advancing a
pediatric research agenda NIH-wide. This amounts to a proportionate
increase for NICHD of $117 million over FY 2021.
Pediatric Subspecialty Loan Repayment Program (PSLRP):
Across the country, there are significant shortages of pediatric
subspecialists--pediatricians who pursue additional training to care
for the most medically complex children--which lead to long travel
distances and long appointment wait times for families. There is also a
disparity in the geographic distribution of pediatric subspecialists,
resulting in many children in underserved rural and urban areas not
receiving timely health care. Shortages of pediatric subspecialists may
also slow the development of the next generation of treatments and
cures for young people, since many pediatric researchers are trained as
subspecialists and dedicate their careers to research on complex health
needs like Type 1 diabetes and autism spectrum disorder.
PSLRP is designed to address these shortages by providing
qualifying child health professionals with up to $35,000 in loan
repayment annually in exchange for practicing in an underserved area
for at least two years, which would help address high medical school
debt that serves as a barrier to pursuing training in a pediatric
subspecialty. Congress reauthorized this program last year in the
Coronavirus Aid, Relief, and Economic Security (CARES) Act in
recognition of the need to support child access to pediatric medical
and mental health care amid the COVID-19 pandemic. We urge you to begin
addressing these shortages by providing $50 million in initial funding
for PSLRP in FY 2022.
Gun Violence Prevention Research:
Gun violence is a public health crisis for citizens of all ages,
genders, races, ethnicities, and socio-economic backgrounds--and this
includes for children and youth. Firearms are now the leading cause of
death for those 1-24 years old in the United States. Suicide accounts
for 40% of these deaths. In the last decade, an increasing number of
teenagers and young adults have died by suicide using a gun, which
results in death more than 90 percent of the time. Funding to better
elucidate risk and protective factors for gun violence in children and
youth and their families is critical to decrease gun deaths and
injuries. For the first time in 25 years, Congress provided a welcomed
investment in this research in FY 2020 and again in FY 2021 at the NIH
and the Centers for Disease Control and Prevention (CDC). After the
absence of research funding for almost 3 generations of young
investigators, additional funding is needed to rebuild the public
health research infrastructure needed for gun violence. We therefore
urge you to provide $50 million in funding for gun violence prevention
research split evenly between the NIH and the CDC, a doubling of
current funding in line with President Biden's FY 2022 budget request.
Agency for Healthcare Research and Quality (AHRQ):
The Agency for Healthcare Research and Quality (AHRQ) funds
research into health care as it is practiced to improve care in the
clinic and support quality improvement. For instance, AHRQ research has
helped reduce unnecessary blood cultures in critically ill children and
led to important insights about the health and economic benefits of
increased physical activity in children. AHRQ has also played an
important role in the development and evaluation of the Pediatric
Quality Measures Program (PQMP), which is helping to improve quality of
care for the 37.6 million children enrolled in Medicaid and the
Children's Health Insurance Program. We urge you to provide $500
million in funding for AHRQ in FY 2022.
Children's Hospital Graduate Medical Education (CHGME):
The ability to produce top quality pediatric research is dependent
on the availability of trained pediatrician scientists who choose to
pursue a career in research. Many factors influence a physician's
choice to pursue research, but a stable pipeline of trained clinicians
is a critical prerequisite. Freestanding children's hospitals train
half of all pediatricians and pediatric subspecialists despite
representing less than one percent of hospitals. CHGME is necessary to
maintain the number of pediatric residents and fellows in the United
States and has allowed participating children's hospitals to improve
their training experience for residents and fellows. A strong
investment in pediatric training through freestanding children's
hospitals is essential to ensuring that future pediatrician scientists
are trained and have the opportunity to pursue pediatric research. We
urge you to provide $485 million in funding for CHGME in FY 2022.
______
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. The causes of the disease remain elusive.
I ask that you include language in the Committee's report for fiscal
year 2022 directing the National Institutes of Health (NIH), Office of
the Director, Multi-Institute Research Issues to expand its research
efforts into amyloidosis. I also ask the Committee to direct NIH to
inform Congress on the steps taken to increase the understanding of the
causes of amyloidosis and the measures taken to improve the diagnosis
and treatment of this devastating group of diseases. The vaccines
developed to combat COVID-19 illustrate the importance of the research
necessary to overcome diseases. Only through more research can deaths
from amyloidosis be prevented.
Over the years, your Committee has been instrumental in moving
forward to finding the causes and a cure for amyloidosis. 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.
I have endured two stem cell transplants in order to fight the
deadly disease amyloidosis and have been one of the lucky ones to
survive the disease for 18 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.
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.
Due to research, there are new forms of treatment that are options
for me and patients with recurring amyloidosis. These new treatment
options were not available 18 years ago. They provide evidence that
funding through Health and Human Services can make a difference.
I ask for your support in helping me turn what has been my life-
threatening experience into hope for others.
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.
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.
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.
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. Another type of
amyloidosis, secondary or reactive amyloidosis, occurs in patients with
chronic infections or inflammatory diseases.
All of these types of amyloidosis, left undiagnosed or untreated,
are fatal.
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
rescue 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.
Timely diagnosis and treatment are of great importance. Early
treatment is the key to success.
More needs to be done in this area to alert health professionals to
identify this disease.
research and diagnosis
Researchers are moving forward with limited funding to develop
targeted treatments that will specifically attack the amyloid proteins.
Additional funding for research and equipment is needed to accomplish
this task. Only through more research is there hope of further
increasing the survival rate and finding treatments to help more
patients.
Amyloidosis is vastly under-diagnosed. Thousands of people die
because they were not diagnosed or diagnosed too late. More needs to be
done to alert health professionals to identify this disease. Although I
was diagnosed at a very early stage of the disease, many people are
diagnosed after the point that they are physically able to undertake
treatment.
I believe there are many more cases of amyloidosis than are known,
as the disease can escape diagnosis and patients die of ``heart
failure,'' ``liver failure,'' etc. In reality, some of these people had
amyloidosis. Perhaps amyloidosis is not as rare a disease as we think.
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.
Basic and clinical research at the Boston University Amyloidosis
Center has increased: models of light chain (AL) amyloid disease have
been developed; serum chaperone proteins that cause amyloid precursor
protein misfolding are being identified; imaging techniques for the
diagnosis of amyloid disease are being investigated; and new clinical
trials for primary and familial amyloidosis are underway. Federal
funding for research, equipment and treatment has been an important
element in progress to date. Further funding is essential to speed the
pace of discovery for basic and clinical research.
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.
I want to use my experience with this rare disease to help save the
lives of others. With your support more can be done to help me achieve
my dream.
______
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) 2022 appropriations and the
importance of the agency's 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 support this
growing field. The tragically uneven effects of the COVID-19 pandemic
have underlined the importance of developing more targeted health care
interventions just as groundbreaking technologies are giving us an
unprecedented ability to understand the biological and environmental
factors that drive disease and influence patients' responses to various
treatments. As the subcommittee begins work on the FY 2022 Labor,
Health and Human Services, Education and Related Agencies
appropriations bill, we strongly support the President's proposed
increase in funding for NIH to $51 billion, and we request the agency
receive no less than $46.1 billion for NIH's base program level budget,
$3.2 billion above the comparable FY 2021 funding level.
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 government spending on
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.
---------------------------------------------------------------------------
\1\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
Corporate/file/PMC_The_
Personalized_Medicine_Report_Opportunity_Challenges_and_the_Future.pdf.
---------------------------------------------------------------------------
i. the role of nih in personalized medicine
Continued research on the genetic and biological underpinnings of
disease has made it possible to develop new personalized medicine
treatments for cancers as well as rare, common, and infectious
diseases. This research has informed the development of more than 286
personalized treatments \2\ and over 166,703 genetic testing products
\3\ available for patients in 2020. Foundational advances in genetic
and genomic technologies have also paved the way for scientists' rapid
response to COVID-19. The rapid progress we have seen, from mRNA
vaccine development, diagnostic testing, and variant sequencing, to
beginning to understand how human genomic variation influences
infectivity, disease severity, vaccine efficacy, and treatment
response, relies on years of personalized medicine research,\4,5\--as
well as years of diligent funding from Congress to support this
research.
---------------------------------------------------------------------------
\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://doi.org/10.1016/j.cell.2021.01.015.
\5\ https://doi.org/10.1038/s41586-020-2817-4.
---------------------------------------------------------------------------
The widely variable effects of COVID-19 have only highlighted the
need for personalized medicine to move further and faster. A $3.2
billion increase would allow for NIH's base budget to keep pace with
biomedical inflation and allow meaningful growth of 5 percent. This
request also includes the full $496 million NIH is scheduled to receive
in FY 2022 from the Innovation Account established in the 21st Century
Cures Act (Cures Act).
ii. sustaining basic and translational research for personalized
medicine
NIH is leading 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 the NIH are supporting 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), and the National Center for Advancing
Translational Sciences (NCATS). An increase for NIH in FY 2022 would
protect its foundational role in the identification and development of
treatments, technologies, and tools for personalized medicine.
The future of cancer care, for example, is expected to be
profoundly influenced by personalized medicine approaches for detecting
and treating early- and late-stage cancers. In 2020, for example, FDA
approved the first comprehensive pan-tumor liquid biopsy test for
patients with advanced cancer that allows physicians to detect
actionable biomarkers in patients' blood through next-generation
sequencing.\6\ As soon as next year, NCI aims to launch large national
trials for similar tests that are being developed to detect multiple
early-stage cancers in patients' blood.\7\ These tests would provide
less invasive testing options that can detect cancers at early stages
when treatment may be more effective and less costly.
---------------------------------------------------------------------------
\6\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
Corporate/file/PM_at_FDA_
The_Scope_Significance_of_Progress_in_2020.pdf.
\7\ https://www.precisiononcologynews.com/policy-legislation/nci-
director-sharpless-outlines-ideas-aggressively-lower-cancer-deaths.
---------------------------------------------------------------------------
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, and in 2019, the
estimated economic cost of only 379 rare diseases reached nearly $1
trillion in the U.S.\8\ Over the past decade, NIH has helped shift the
scientific approach to researching rare diseases from one disease at a
time to many diseases. Pooling patients, data, experiences, and
resources promises to lead to more successful clinical trials sooner
for rare disease patients who presently have few or no treatment
options.
---------------------------------------------------------------------------
\8\ https://everylifefoundation.org/burden-study/.
---------------------------------------------------------------------------
There are others living with highly prevalent diseases where
personalized medicine can offer patients better treatments or a cure.
The Alzheimer's Association estimates that 6.2 million Americans are
living with Alzheimer's disease, for example.\9\ Despite increasing
numbers of Alzheimer's diagnoses and FDA's recent approval of the first
new Alzheimer's drug in decades, researchers are still studying 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 for Alzheimer's disease led by NIH has identified
over 500 drug targets, and in 2020 launched a second iteration of the
partnership to enable a personalized medicine approach to researching
new treatments.\10\
---------------------------------------------------------------------------
\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.
---------------------------------------------------------------------------
Still, ensuring that the 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. Improving research policies and incorporating
diverse perspectives into solving complex scientific problems, such as
through NIH's UNITE initiative and NHGRI's action agenda for a diverse
genomics workforce, will play a key role in addressing these
disparities, in addition to research on improving minority health and
understanding factors contributing to health disparities.
iii. accelerating personalized medicine research
Increasing the NIH's base budget will also ensure that the agency
has the resources necessary to advance the longstanding aspects of its
mission without de-prioritizing supplemental initiatives in
personalized medicine provided for by Congress in the Cures Act.
The first initiative, 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 May 2021, over 382,000 individuals consented to participate and
over 279,000 have fully enrolled.\11\ More than 80 percent of those
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. Last
year, program officials met their targets to start returning individual
genetic results to participants and inviting researchers to begin using
the data collected.\13\ The program also began analyzing data from its
diverse participant cohort to look for patterns explaining individuals'
different responses to COVID-19.\14\ In the future, pooling health care
data across large datasets will play a key role in advancing research
for personalized medicine approaches to care.
---------------------------------------------------------------------------
\11\ https://www.joinallofus.org/newsletters/2021/may.
\12\ https://doi.org/10.1016/j.cell.2021.01.015.
\13\ https://www.joinallofus.org/newsletters/2020/december.
\14\ https://www.nih.gov/news-events/news-releases/all-us-research-
program-launches-covid-19-research-initiatives.
---------------------------------------------------------------------------
The second initiative, the Beau Biden Cancer Moonshot, aims to
transform the way cancer research is conducted by fostering
collaboration and data sharing. Moonshot currently supports over 240
new research projects, \15\ including the Partnership for Accelerating
Cancer Therapies (PACT). Through PACT, the NIH is collaborating with 12
pharmaceutical companies, the Foundation for NIH, and FDA to identify,
develop, and validate biomarkers to advance the discovery of new
immunotherapy treatments. Over the past decade, personalized treatments
harnessing the immune system have driven declines in mortality for lung
cancer and melanoma.
---------------------------------------------------------------------------
\15\ https://doi.org/10.1016/j.ccell.2021.04.015.
---------------------------------------------------------------------------
iv. conclusion
PMC appreciates the opportunity to highlight the NIH's importance
to the continued success of personalized medicine. As the subcommittee
considers the President's proposal, we encourage the subcommittee to
support at least a $3.2 billion increase for existing centers and
programs, in addition to funding Congress may provide for targeted
initiatives such as establishing the President's proposed Advanced
Research Projects Agency for Health (ARPA-H). PMC believes that
diligently funding basic and translational research at the NIH is key
to bringing us closer to a future in which every patient benefits from
an individualized approach to health care.
[This statement was submitted by Cynthia A. Bens, Senior Vice
President, Public Policy, Personalized Medicine Coalition.]
______
Prepared Statement of the Physical Activity Alliance
Members of the subcommittee, thank you for the opportunity to
testify today. My name is Mark Fenton. I am an adjunct associate
professor at Tuft University and a nationally recognized public health,
planning, and transportation consultant. I am representing the Physical
Activity Alliance, the nation's broadest coalition dedicated to
promoting physical activity for health. As such, I'm pleased to testify
today on specific opportunities to improve Americans' health in the
fiscal year (FY) 2022 Labor, Health and Human Services, Education and
Related Agencies appropriations bill that address funding for the
Centers for Disease Control and Prevention. I respectfully request you
work over the next three years to triple the budget of the Centers for
Disease Control and Prevention (CDC) National Center for Chronic
Disease Prevention and Health Promotion (NCCDPHP) to $3.75 billion,
including in this next budget at least $125 million for the Division of
Nutrition, Physical Activity and Obesity (DNPAO), and $10 million for
Active People Healthy Nation (APHN), an initiative to help 27 million
Americans become more physically active by 2027.
The Active People Healthy Nation support would build on the
increased capacity of the public health infrastructure from a 50-state
DNPAO program funding commitment. The 50-state program, including the
District of Columbia, would allow for each state to have resources for
staff who are experts in:
--Promoting physical activity through community and state changes to
increase safe and convenient access to physical activity,
especially for those populations most at risk of physical
inactivity, through activities such as master planning, access
to parks, safe routes to school, and improvements for
physically active (walking and bicycling) routes to everyday
destinations.
--Promoting nutrition security especially for the youngest and most
vulnerable populations
--Obesity prevention and management with linkages to health care
systems
--Communication and policy
--Evaluation, quality improvement and accountability
--Equitable and inclusive community engagement
The specific resources for Active People Heathy Nation would allow
states, municipalities and, local communities to leverage the expertise
of the 50-state program to specifically address the populations who are
the most disproportionately affected by risk of chronic diseases
(including obesity, diabetes, cancer and heart disease) due to their
lack of safe and convenient access to physical activity. This could
include but is certainly not limited to:
--Implementing social support systems and networks to promote walking
for older populations.
--Implementing low-cost ``quick builds'' to improve street designs to
encourage safe walking and biking at the local level in
specific neighborhoods where health disparities are the
greatest.
--Convening local groups to develop action plans for promoting safe
and convenient access to local parks and other key
destinations.
--Promoting safe routes to schools with design changes (e.g., high
visibility crosswalks, traffic calming near schools) to
increase safety and to reduce hesitancy from parents.
--Taking steps to prioritize safety over speed in local and state
policies and practices.
As a consultant to communities across the country, I have seen the
positive impact of these funds in communities, especially for those
that are historically under-resourced. The pandemic has demonstrated
that chronic diseases and infectious diseases are inextricably linked
and inequity can be exacerbated. Addressing chronic diseases, their
associated risk factors, as well as mental health and well-being are
essential for improving our population health and productivity. And
physical activity to improve cardiorespiratory fitness are integral
interventions. Being physically active is one of the most important
lifestyle behaviors people can engage in to maintain their physical
health, improve their mental health, and optimize well-being.\1\
---------------------------------------------------------------------------
\1\ US Department of Health and Human Services. Physical Activity
Guidelines for Americans, 2nd edition. 2018.
---------------------------------------------------------------------------
--Studies show that physical activity is associated with strong
immune response, better outcomes from community-acquired
infectious disease, reduced mortality and increased vaccine
potency.\2,3,4,5\
---------------------------------------------------------------------------
\2\ Nieman DC, Wentz LM. The compelling link between physical
activity and the body's defense system. J Sport Heal Sci. Published
online 2019. doi:10.1016/j.jshs.2018.09.009.
\3\ Hamer M, Kivimaki M, Gale CR, David Batty G. Lifestyle risk
factors, inflammatory mechanisms, and COVID-19 hospitalization: A
community-based cohort study of 387,109 adults in UK. Brain Behav
Immun. Pblished online 2020.
\4\ Dixit S. Can moderate intensity aerobic exercise be an
effective and valuable therapy in preventing and controlling the
pandemic of COVID-19? Med Hypotheses. Published online 2020.
\5\ Perico, L., Benigni, A., Casiraghi, F., Ng, LFP., Renia, L.,
Remuzzi, G. Immuity, endothelial injury and complement-induced
coagulopathy in COVID-19. Nature Reviews Nephrology. October 2020.
---------------------------------------------------------------------------
--Physical activity also contributes to social connectedness,\6\
quality of life,\7\ and environmental sustainability.\8,9\
---------------------------------------------------------------------------
\6\ Wray, A., Martin, G., Ostermeier, E., Medeiros, A., Little, M.,
Reilly, K., Gilliland, J. Physical activity and social connectedness
interventions in outdoor spaces among children and youth: a rapid
review. Health Promotion and Chronic Disease Prevention in Canada.
Research Policy and Practice. April 2020; 40(4): 1-12.
\7\ Posadzki, P., Pieper, D., Bajpai, R., Makaruk, H., Kongsen, N.,
Lena Neuhaus, A., Semwal, M., Exercise/physical activity and health
outcomes: an overview of Cochrane systematic reviews. BMC Public
Health. November 2020. https://bmcpublichealth.biomedcentral.com/
articles/10.1186/s12889-020-09855-3.
\8\ Global Advocacy Council for Physical Activity International
Society for Physical Activity and Health. The Toronto Charter for
Physical Activity: A Global Call for Action. J Phys Act Health. 2010;7
Suppl 3:S370-85.
\9\ Safe routes to school: Steps to a greener future. How walking
and bicycling to school reduce carbon emissions and air pollutants.
Accessed online November 2020 at https://www.saferoutespartnership.org/
sites/default/files/pdf/SRTS_GHG_lo_res.pdf.
---------------------------------------------------------------------------
--Regular physical activity is both health-promoting and important
for treatment and prevention of diseases such as cardiovascular
disease and cancer that are the leading causes of death in the
U.S., with numerous benefits that contribute to a disability-
free lifespan.\10\
---------------------------------------------------------------------------
\10\ Wen CP and Wu X. Stressing harms of physical inactivity to
promote exercise. Lancet. 2012;380:192-3.
---------------------------------------------------------------------------
--There are racial, ethnic and socioeconomic status (SES) disparities
that exist with regard to physical activity, access to
recreational spaces and physical activity-related programs.
These disparities differ with respect to occupation,
transportation, community infrastructure, and
leisure.\11,12,13\
---------------------------------------------------------------------------
\11\ Thornton, C.M., Conway, T.L., Cain, K.L., Gavand, K.A.,
Saelens, B.E., Frank, L.D., Geremia, C.M., Glanz, K., King, A.C., and
Sallis, J.F. Disparities in pedestrian streetscape environments by
income and race/ethnicity. SSM-Population Health, 2016; 2, 206-216.
\12\ Engelberg, J.K., Conway, T.L., Geremia, C., Cain, K.L.,
Saelens, B.E., Glanz, K., Frank, L.D., and Sallis, J.F. Socioeconomic
and race/ethnic disparities in observed park quality. BMC Public
Health, 2016;16:395.
\13\ Jones, SA., Moore, LV., Moore, K., Zagorski, M., Brines, SJ.,
Diez Roux, A., Evenson, KR. Disparities in physical activity resource
availability in six US regions. Prev Med. 2015; 78:17-22.
---------------------------------------------------------------------------
--Low physical activity and fitness pose immediate and long-term
threats to our nation's safety and security. Currently, 71
percent of Americans ages 17-24 fail to meet core eligibility
requirements for entrance into the military, creating a serious
recruiting deficit.\14\ Among those who do meet basic
requirements for service, musculoskeletal injuries associated
with low fitness levels cost the Department of Defense hundreds
of millions of dollars,\15\ and have been identified as the
most significant medical impediment to military readiness.\16\
---------------------------------------------------------------------------
\14\ U.S. Department of Defense, Joint Advertising Market Research
and Studies. (2016). The target population for military recruitment:
youth eligible to enlist without a waiver. https://
dacowits.defense.gov/Portals/48/Documents/General%20Documents/
RFI%20Docs/Sept2016/JAMRS%20RFI%2014. pdf?ver=2016-09-09-164855-510.
\15\ Bulzacchelli M, Sulsky S, Zhu L, Brandt S, Barenberg A. The
cost of basic combat training injuries in the U.S. Army: injury-related
medical care and risk factors. In: Military Performance Division, U.S.
Army Research Institute of Environmental Medicine. Edited by Natick MA,
March 2017.
\16\ Hauret KG, Jones BH, Bullock SH, Canham-Chervak M, Canada S.
Musculoskeletal injuries description of an under-recognized injury
problem among military personnel. AmJ Prev Med. Jan 2010;
38(1)(suppl):S61-S70.
---------------------------------------------------------------------------
Streets and downtowns that are designed to safely accommodate the
physically active modes (walking, biking, and transit) along with motor
vehicles are more economically robust,\17\ have more resilient real
estate values,\18\ and are increasingly appealing to businesses because
of enhanced employee recruitment and retention.\19\
---------------------------------------------------------------------------
\17\ Liu JH, Wei S, Understanding Economic and Business Impacts of
Street Improvements for Bicycle and Pedestrian Mobility: A Multi-City,
Multi-Approach Exploration. Nat'l Inst. for Transportaion &
Communities, NITC-RR-1031-1161, April 2020.
\18\ Bokhari S, How Much is a Point of Walkscore Worth? https://
www.redfin.com/news/how-much-is-a-point-of-walk-score-worth/. Aug 2016,
update Oct. 2020.
\19\ Andersen M, Hall ML, Protected Bike Lanes Mean Business,
Alliance for Biking and Walking, 2016, https://
www.peoplepoweredmovement.org/site/images/uploads/Protected_Bike_Lanes
_Mean_Business.pdf.
---------------------------------------------------------------------------
Physical activity is integral to population health and well-being,
educational achievement, effective health care delivery, emergency
preparedness, and military readiness, and will be critical to our
nation's recovery from the pandemic. If we can help more Americans to
be physically active, we will save lives, contribute to lower vehicle
emissions and health care costs, reduce racial, ethnic, gender, and
socioeconomic health disparities, improve mental well-being, and make
American employers and the U.S. overall much more productive and
successful.
I thank you for the opportunity to offer my perspective today, and
for your continued leadership.
______
Prepared Statement of Planned Parenthood
Dear Chairwoman Murray and Ranking Member Blunt,
Planned Parenthood is the nation's leading reproductive health care
provider and advocate and a trusted, nonprofit source of primary and
preventive care for women, men, and young people in communities across
the U.S as well as the nation's largest provider of sex education. As
experts in sexual and reproductive health care, we reach 2.4 million
people in our health centers, 1.1 million people through educational
programs, and see 198 million visits to our website every year. People
come to Planned Parenthood for the accurate information and critical
resources they need to stay healthy and reach their life goals. For
many of our patients, Planned Parenthood is their only source of care--
making our health centers an irreplaceable part of this country's
health care system. Backed by more than 17 million supporters, Planned
Parenthood Action Fund works every day to defend access to health care
and advance reproductive rights at home and abroad. Through our
international arm, Planned Parenthood Global, we provide financial and
technical support to nearly 100 innovative partners in nine countries
in Africa and Latin America for service delivery and advocacy to expand
access to reproductive health care and empower people to lead healthier
lives.
Longstanding progress towards addressing sexual and reproductive
health both here in the United States and around the world has been
undermined and is threatened to erode further--both deliberately and as
a result of unprecedented challenges, most notably the COVID-19
pandemic. The Biden-Harris administration has taken welcome early
actions to reverse the Trump-Pence administration's ideological and
harmful policies--including the global gag rule and Title X domestic
gag rule--and prioritize sexual and reproductive health and rights, but
more action is needed from both the administration and congress to
ground policies in science and equity and expand access to health care,
including sexual and reproductive health, for millions, particularly
for those who most often struggle to overcome the systemic barriers to
care. Meanwhile the pandemic has exacerbated existing inequities in
health care systems and created a growing need for timely services,
including those to help with the growing number of households that have
identified a need for affordable family planning and increasing rates
of sexually-transmitted infections (STIs).
Through these extraordinary challenges, Planned Parenthood health
centers continue to expand services and innovate new and better ways to
deliver health care and information--through telehealth and in health
centers across the country. We are breaking down structural barriers to
accessing reproductive health care by making it more timely, relevant
and equitable for all people.
However, there remain significant and unacceptable inequities in
health outcomes that are the result of longstanding systems of
oppression that deeply impact traditionally marginalized communities,
including persons of color, those with low-incomes, those who identify
as LGBTQ, and those who live at the intersection of structural racism,
inequality, sexism, classism, xenophobia, and other systemic barriers
to health care and other resources are among those most severely
impacted. The ongoing COVID-19 pandemic has underscored the inequities
in access to health care worldwide, both within and between countries,
and is further exacerbating gender-based violence and the financial
barriers to seeking care that is needed, including sexual and
reproductive health services.
On behalf of Planned Parenthood Federation of America, I
respectfully request that while assembling legislation to provide
appropriations for fiscal year 2022 (FY22) you provide increased
funding for key sexual and reproductive health funding priorities while
also ending harmful and discriminatory policies that undermine access
to care, including by:
1. Building Back the Title X Family Planning Program
2. Increasing Funding for STI Prevention
3. Increasing Funding for the Teen Pregnancy Prevention Program and
the CDC's Division of Adolescent School Health, and Eliminate Harmful
and Ineffective Abstinence-Only-Until-Marriage Programs
4. Eliminating Harmful Policy Riders that Limit Access to Abortion
1. Building Back the Title X Family Planning Program
Title X is the nation's only federal program dedicated to providing
affordable birth control and other reproductive health care to people
with low incomes. Despite mass outcry from the public health community
and American people, in August 2019 the Trump administration began
enforcing a rule that made significant changes to Title X. The gag
rule--a harmful regulation that prohibits Title X providers from giving
their patients full and accurate information--dismantles the program
and blocks people struggling to get by from getting free or low-cost
birth control, STI services, cancer screenings, and other essential
health care. The gag rule slashed the Title X network's patient
capacity nearly in half, creating unacceptable barriers to affordable
care. The gag rule resulted in family planning providers in 33 states
leaving the program and at least 1.5 million people, many of whom are
low-income, losing access to Title X-funded care at the site they had
used in 2018. More than 1,000 sites (roughly 25 percent) have left the
Title X network; six states (HI, ME, OR, UT, VT, and WA) currently have
no Title X-funded services.
In the meantime the COVID-19 pandemic has further exacerbated the
county's sexual and reproductive health care needs. In spring 2020, 33
percent of women faced delays or were unable to get contraception or
other care because of the COVID-19 pandemic, while 34 percent wanted to
get pregnant later or wanted fewer children because of the pandemic.
Women belonging to groups already experiencing systemic health and
social inequalities--such as Black and Latina women, queer women, and
low income women--reported the greatest change in fertility preference
and barriers to access.
In April 2021, the Biden administration issued a notice of proposed
rulemaking and we applaud their proposal to rescind the gag rule and
make several modifications aimed at ``strengthen[ing] the program and
ensur[ing] access to equitable, affordable, client-centered, quality
family planning services for all clients, especially for low-income
clients.'' \1\ However, an increase in annual funding will be necessary
to help rebuild the Title X network and provide much-needed care to
qualifying participants.
---------------------------------------------------------------------------
\1\ https://www.hhs.gov/about/news/2021/04/14/fact-sheet-notice-of-
proposed-rulemaking-ensuring-access-to-equitable-affordable-client-
centered.html.
---------------------------------------------------------------------------
The best analysis (conducted prior to the pandemic and without
adjusting for inflation) estimates that the Title X program would need
$737 million in annual funding to address the unmet family planning
needs for low-income women. We urge Congress to provide the program
with $512 million in FY22 funding--an increase halfway towards the
unmet need of the program--to help rebuild the Title X network and
restore access to critical health care services.
2. Increasing Funding for STI and HIV Prevention at the Centers for
Disease Control and Prevention (CDC)
Sexually-transmitted infections (STIs) are a serious and growing
public health problem. This month the latest annual CDC surveillance
report announced that STD rates have reached an all-time high for the
sixth consecutive year. In 2019, more than 2.5 million cases of
syphilis, chlamydia, and gonorrhea diagnoses were identified in the
United States.\2\ Of particular concern were cases of congenital
syphilis--syphilis passed from a mother to her baby during pregnancy--
which have quadrupled between 2015. Congenital syphilis can result in
miscarriage, stillbirth, newborn death, and severe lifelong physical
and neurological problems. The report also identified that disparities
in rates persist among racial and ethnic groups. For example, STD rates
for Hispanic or Latino people ranging up to two times those of non-
Hispanic White people. Rates for American Indian or Alaska Native and
Native Hawaiian or Other Pacific Islander people were 3-5 times as high
while rates for African American or Black people were five to eight
times those of non-Hispanic White people. All of this has likely been
exacerbated by the COVID-19 pandemic which has reduced access to
essential screening and treatment services and stretched public health
resources thin.
---------------------------------------------------------------------------
\2\ Centers for Disease Control and Prevention (CDC). 2019 STD
Surveillance Report. April 13, 2021. https://www.cdc.gov/nchhstp/
newsroom/2021/2019-STD-surveillance-report.html.
---------------------------------------------------------------------------
Screening and treatment for STIs-including HIV/AIDS-are an
essential part of planning for a healthy pregnancy and healthy
communities. Despite the CDC recommendation that all pregnant women be
tested for STIs, many women and other sexually active adults are not
being adequately tested, in part because of limited resources for
screening. The CDC's National Center for HIV/AIDS, Hepatitis, STIs and
TB Prevention (NCHHSTP) conducts critical public health surveillance,
but also funds screenings and other important activities. Increasing
funding for the CDC's STI prevention programs is a cost-effective
public health investment that will improve the lives of women and all
Americans across the country. We ask that you fund CDC/NCHHSTP at $1.4
billion for FY22, including $252.91 million for the Division of STD
Prevention.
3. Increasing Funding for the Teen Pregnancy Prevention Program and the
CDC's Division of Adolescent School Health, Eliminate Harmful
and Ineffective Abstinence-Only-Until-Marriage Programs
As the nation's leading provider of sex education, Planned
Parenthood works in and with communities across the country to provide
outstanding sex education programs. Our educators see daily how vital
it is for young people to have access to sex education programs that
give them knowledge and skills they need to lead fulfilling, safe, and
healthy lives. However, less than 43 percent of all high schools and
only 18 percent of middle schools across the country provide education
on all of the CDC's identified topics that are critical to ensuring
sexual health.\3\ Congress should continue to make investments in
programs that are proven to promote adolescent health by increasing
young people's access to medically accurate and age-appropriate sexual
health information that they need to make safe and healthy decisions.
---------------------------------------------------------------------------
\3\ 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.
---------------------------------------------------------------------------
Since fiscal year 2010 (FY10), the Teen Pregnancy Prevention
Program (TPPP) has supported projects and programs that deliver
community-driven, evidence-based or informed, medically accurate, and
age-appropriate approaches that incorporate involvement from parents,
educators, and health providers. Beginning in 2015, 84 organizations in
33 states, the District of Columbia, and the Marshall Islands were
awarded TPPP funds to replicate evidence-based programs in communities
with the greatest needs; conduct rigorous evaluation of new and
innovative approaches to prevent unintended teen pregnancy; or build
capacity to support implementation of evidence-based programs. The
positive outcomes of the program have been well-documented. In
September 2017, the bipartisan Commission on Evidence-Based
Policymaking, established by then-House Speaker Paul Ryan and Senator
Patty Murray, highlighted TPPP as a model example of a federal program
that has developed evidence in support of good policy.
Planned Parenthood urges you to increase TPPP funding to $150
million. This $49 million funding increase from FY21 to FY22 is
partially offset by eliminating $35 million for discretionary sexual
risk avoidance (SRA) grants. Additionally we urge you to support $6.8
million for dedicated evaluation transfer authority, and ask that
$900,000 of the $6.8 million in Public Health Service Act funding for
``Evaluation of Teen Pregnancy Prevention Approaches'' be allocated
specifically to reactivate the Teen Pregnancy Prevention Evidence
Review. Furthermore, urge you to eliminate funding for the abstinence-
only-until-marriage ``sexual risk avoidance'' competitive grant
program.
The CDC's Division of Adolescent and School Health (DASH) provides
funding to local education agencies across the country to implement
school-based programs and practices designed to prevent HIV and other
STIs among young people, and also integrates approaches aimed at
substance use and violence prevention. In addition, the program expands
the research and evidence base of how to best meet the respective needs
of young people, including LGBTQ youth and other adolescents.
Currently, DASH provides funding to 28 school districts across the
country. Providing a significant increase ($66 million over the FY21
enacted level) to DASH funding would considerably expand the number
served through this important program. We ask that you provide CDC/DASH
with $100 million in FY22.
4. Eliminating Harmful and Discriminatory Policy Riders That Undermine
Access to Abortion and Reject Any New Anti-Sexual and
Reproductive Health Provisions
Opponents of sexual and reproductive health and rights have long
used the appropriations process to undermine access to comprehensive
reproductive care, including access to abortion. Through policy riders
in bills under the jurisdiction of multiple subcommittees, including
the original Hyde Amendment in the Labor/HHS bill, opponents have
limited access for women on Medicaid, women who work for the federal
government, women in prison, and others, including women living in the
District of Columbia, which is even prohibited from spending non-
federal funds on these services. Separately, the Weldon Amendment has
been used to interfere with policies that expand abortion coverage and
access, emboldening health entities to refuse to provide, cover, pay
for, or refer for abortion services.When elected officials deny certain
categories of women insurance coverage for or access to abortion, they
either are forced to carry the pregnancy to term or pay for care out of
their own pockets or simply do not get the care they need. The result
is unfair and discriminatory policy that further exacerbates poor
public health outcomes for those who already face significant barriers
to care, such as low-income women, immigrant women, young women, and
women of color. We urge the Committee to eliminate all such
restrictions on access to abortion.
In addition, the Committee should reject any harmful new policy
riders we have seen proposed in years past that would roll back
progress, including proposals to ``defund'' Planned Parenthood.
********
PPFA issues these requests in the hopes that we can protect and
build upon federal investments to make quality reproductive health care
affordable and accessible so that women and their families can lead
healthier lives. We welcome the opportunity to discuss these requests
with you or your staff. If you have questions about any of the above
requests, please don't hesitate to contact me at
([email protected]). For more information about domestic
priorities, please contact Jack Rayburn, Director, Legislative Affairs
at ([email protected]).
Sincerely.
[This statement was submitted by Jacqueline Ayers, Vice President
of Public
Policy and Government Affairs, Planned Parenthood Federation of
America.]
______
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 FY 2022, we
urge the Subcommittee to adopt the following funding recommendations:
$46.1 billion, NIH; $200 million, NCHS; $700 million, IES; and $800
million, BLS. In addition, we urge the subcommittee to accept report
language, previously submitted, regarding population research programs
and surveys supported by 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 $46.1 billion for the NIH, a $3 billion increase over the NIH's
program level funding in FY 2021. We urge that NIA and NICHD, as
components of the NIH, receive commensurate funding increases in FY
2022.
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 FY 2022, 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 FY 2022, 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.
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. Further, population scientists encourage NICHD
to explore the use of existing and new mechanisms to enhance research
regarding the effects of COVID on fertility trends and reproductive
health overall. With additional funding in FY 2022, the Institute could
sustain its existing population research activities as well as
implement our field's recommended COVID related research expansions.
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 a member of the Friends of NCHS,
recommends the agency receive $200 million in FY 2022. 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). The CDC should be encouraged to provide
NCHS with a greater share of the agency's DMI funding--especially given
NCHS has received less than 4 percent of the $600 million that DMI has
received since FY 2020. 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.
bureau of labor statistics
Population scientists who study and evaluate labor and related
economic policies use BLS data extensively. The field also relies on
unique BLS-supported surveys, such as the American Time Use Survey and
National Longitudinal Surveys, to understand how work, unemployment,
and retirement influence health and well-being outcomes across the
lifespan. As members of the Friends of Labor Statistics, PAA and APC
are very grateful for $40 million programmatic increase that BLS
received in FY 2020 and for maintaining the agency's funding level in
FY 2021. We are also pleased that BLS received $10 million in FY 2020,
and report language in FY 2021, to plan for a new youth cohort for the
National Longitudinal Survey of Youth (NLSY). As the Subcommittee
knows, the current NLSY 1979 and 1997 cohorts cannot provide adequate
information about teens and young adults entering the labor market. PAA
and APC hope that this planning process will provoke a new, necessary
NLSY cohort. We urge the Subcommittee to give the agency increased
support in FY 2022 by providing BLS with $800 million and to adopt,
once again, report language urging the agency to maintain its plans for
a new NLSY cohort.
institute of education sciences
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
topics, such as linkages between educational access/attainment to
health outcomes of specific populations, economic well-being, and
incarceration rates. The field is pleased NCES is ramping up a new
School Pulse Survey (SPS), to begin in August, that will collect data
on how schools are adapting during the recovery phase of the pandemic.
PAA continues to be concerned, however, that NCES has inadequate
staffing to effectively manage the agency's broad array of surveys and
other data collection and evaluation programs, and to maintain data
quality and program rigor--particularly as it takes on new initiatives
such as SPS. Years of staff attrition combined with bureaucratic
hurdles have hindered the agency's ability to replace key personnel and
maintain an adequate staffing level. We urge the Committee to continue
to exert careful oversight of this situation.
Thank you for considering our support for these agencies as the
Subcommittee drafts the FY 2022 Labor, Health and Human Services and
Education Appropriations bill.
______
Prepared Statement of the Port Gamble S'Klallam Tribe
_______________________________________________________________________
Requests and Recommendations:
1. Increase in funding for the Tribal Opioid Response grant program
to a minimum of $75 million;
2. Increase in funding for the Temporary Assistance for Needy
Families Program to a minimum of $17.8 billion;
3. Increase in funding for the Child Support Program to a minimum
of $4.424 billion;
4. Increase in funding for the Head Start Program to a minimum of
$17.8 billion;
5. Increase in funding for the Child Care and Development Block
Grant to a minimum of $7.3 billion; and
6. Increase in funding for the Low-Income Home Energy Assistance
Program to a minimum of $3.85 billion and a tribal set-aside.\1\
---------------------------------------------------------------------------
\1\ We also support the National Congress of American Indians' FY
2022 budget requests. See NCAI, Indian Country FY 2022 Budget Request:
Restoring Promises, https://www.ncai.org/resources/ncaipublications/
NCAI_IndianCountry_FY2022_BudgetRequest.pdf.
---------------------------------------------------------------------------
_______________________________________________________________________
introduction
The Port Gamble S'Klallam Tribe is a sovereign Indian nation
comprised of over 1,342 citizens located on the northern tip of the
Kitsap Peninsula in Northwest Washington State. The 1855 Point No Point
Treaty reserved hunting, fishing, and gathering rights for our Tribe,
and the United States agreed to respect the sovereignty of our Tribe
and to protect and provide for the well-being of our Tribe. The United
States, therefore, has both treaty and trust obligations to protect our
lands and resources and provide for the health and well-being of our
citizens. The current COVID-19 pandemic has necessitated the need for
more resources and services to provide for the health, safety, and
welfare of our tribal citizens as well as American Indian and Alaska
Native (AI/AN) people across the United States.
Overarching Comments. Thank you for your commitment to honor and
uphold the United States' trust and treaty obligations, strengthen the
government-to-government relationship between the United States and
tribes, and empower tribes to govern their own communities and make
their own decisions. As you know, federal programs and services are
critical components of building strong tribal governments, economies,
and communities. We look to the Subcommittee to help address the
chronic underfunding of unmet federal obligations and duties owed to
Indian Country. This includes providing funding and support for the
delivery of reliable and quality health care to AI/AN people, ensuring
tribal communities are safe and secure, and expanding economic
opportunity and community development in tribal communities. We ask the
Subcommittee to support increased funding for critical Indian programs
and the inclusion of helpful report language on many significant issues
impacting Indian Country.
Funding for Tribal Health Care. Appropriations to support health
care services are needed to, among other things, address the
significant health disparities that persist among AI/AN people, treat
chronic diseases that plague tribal communities, update and improve
tribal health clinics, and modernize equipment and health information
technology within Indian Country. Our Tribe has administered health
services to its members for several years, and was one of the first
tribes to join the Tribal Self-Governance Project in 1990. We are the
only Indian health care provider of both primary and behavioral health
services in Kitsap County. Our health programs aim to provide the
highest quality medical care and treatment to individuals within our
tribal community, but we still face significant challenges related to
funding, facilities, and program administration. Due to the COVID-19
pandemic, our health programs have run short of resources and need
additional funding to support the services we provide. To strengthen
our health programs, we ask for the following in the FY 2022
appropriations:
Tribal Opioid Response. We appreciate the President's proposed
funding of $75 million to the Tribal Opioid Response grant program, but
more is needed. This program to critical to address the opioid
substance use needs in tribal communities. Indian Country, including
our Tribe's Reservation, has been severely affected by the opioid
epidemic. Increased funding for the Tribal Opioid Response grant
program will address increasing rates of opioid dependence, overdose,
and other negative consequences stemming from opioid use. Funding is
essential to combat the opioid crisis that imposes threats to Indian
Country.
Temporary Assistance for Needy Families (TANF). We support the
President's FY 2022 request of $17.8 billion to support the TANF
Program, which would be an increase in $600 million over FY 2021. The
TANF Program is a capped entitlement program that has continued to
receive the same funding level since it was established. The Tribe
strongly encourages reauthorization of the TANF Program with higher
funding levels in order to provide temporary assistance and economic
self-sufficiency for children and families. The Tribe currently
receives $516,680 from the TANF Program to support its members and
strongly encourages a continuation of at least this amount. However,
there remains an unmet need to operate programs for the benefit of low-
income families. These programs are necessary for the United States to
fulfill its trust responsibility and contribute to the overall well-
being of the Tribe's members.
Child Support Program. We reject the President's request to reduce
funding for the Child Support Program by $233 million to a total of
$4.16 billion. Instead, funding for the Program should be at $4.424
billion, the FY 2020 level. The Tribe operates a robust Child Support
Program. The Tribe's Child Support Program has a need of $781,955 to
enhance its services offered to children with need and to improve
activities offered to children, including an increase of staff members,
support staff training, child counseling, and ensuring that the
physical environments of the Tribe's Head Start Program is conducive to
providing effective program services, increased hours of operation,
improved strategic planning for the program, and safe transportation of
children in the program safely, An increase in funding for the Child
Support Program would allow the Tribe to increase and enhance services
to its members. Any decrease in the level of funding for the Child
Support Program would cause hardship to the Tribe's members.
Head Start Program. We support the President's request of $11.9
billion for the Head Start Program-an increase of $1.2 billion over the
FY 2021 enacted level. The Head Start Program promotes the school
readiness of our tribal youth as well as early learning and
development, health, and family well-being of children from low-income
families. Funding from the Head Start Program greatly assists the Tribe
in offering competitive wages to its employees in its Early Head Start
Program. The Tribe needs additional funding over and above its current
funding to pay its teachers to ensure equitable wages that support Head
Start Performance Standard Regulations. Such funding will also help the
Tribe recruit and maintain teachers and teaching assistants, which is
critical to our education programs and the children the Tribe serves.
The Tribe estimates that it needs at least $235,000 to be able to offer
competitive wages to its program employees. In addition, the Tribe
would like to invest $18,000 in an outdoor learning environment and
$75,000 to support Head Start Program Performance Standards. Indigenous
learning is based on outdoor environments that reflect tribal culture.
The Tribe is in need of funds to plan and develop an outdoor learning
environment to support exploration and discovery in forest/beach/
wetland/stream. Lastly, the Tribe requests an increase in quality
improvement funds to support our students, staff, and families based on
community need.
Child Care and Development Block Grant. Our Tribe supports the
President's request for providing $7.3 billion in discretionary funds
for the Child Care and Development Block Grant. This program supports
low-income, working families within our Tribe by providing access to
affordable, high quality child care. Adequate child care is essential
for our tribal members. The pot of child care money going to Tribal
governments from this program needs to be bigger so that the portions
of it that Tribes receive can meet their needs. The overall funding
amount for the Child Care Development Fund needs to be increased and
Tribes should get a 5% set-aside from it. Indian Country, including our
Tribe, have a strong need to access the Fund for facility purposes. An
increase in funding for the Child Care and Development Block Grant
would allow the Tribe to increase and enhance services intended to
serve its youth.
Low-Income Home Energy Assistance Program (LIHEAP). We appreciate
the President's request to increase funding for the LIHEAP Program by
$100 million for a total of $3.85 billion. The LIHEAP Program assists
low-income households to pay a proportion of household income for home
energy, primarily in meeting their immediate home energy needs.
Currently, the Tribe receives $23,979 from LIHEAP to assist its
members, but there continues to be an unmet need. The Tribe requests an
increase in LIHEAP funding to assist our tribal members in paying their
home energy bills. Any decrease or in the current level of funding in
the LIHEAP Program would cause significant hardship to the Tribe's
members. We also request that a tribal set-aside for the LIHEAP Program
be established.
conclusion
Thank you for the opportunity to share our interests regarding FY
2022 appropriations for programs and services that will greatly benefit
us as well as other tribes across the United States. On behalf of the
Port Gamble S'Klallam Tribe, we thank you and your dedication and
continued hard work in protecting the tribal interests. We know that
you will be fighting for Indian Country in the appropriations process.
[This statement was submitted by Jeromy Sullivan, Chairman, Port
Gamble S'Klallam Tribe.]
______
Prepared Statement of Public Health-Seattle & King County, WA
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 for Public Health-Seattle & King County in
Seattle, WA.
I am pleased to submit testimony on behalf of King County, WA to
urge Congress to appropriate $120 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).
King County, WA is seeing an unprecedented surge in overdose
deaths. In 2020, there were 510 confirmed overdoses in the county,
which is more than the 422 experienced in 2019. There has been a year
over year rise over the past decade when there were 245 overdose
fatalities in 2011. The majority of the drug overdoses include opioids,
although a rising number of overdoses also contain stimulants both
alone and in polysubstance use overdoses. Our county is also besieged
by fentanyl rising from 3 fentanyl related overdose deaths in 2015, to
172 in 2020 with 135 confirmed fentanyl overdoses already in 2021 (as
of date authored). We know that access to sterile use equipment is one
of the evidence-based interventions that keeps individuals engaged in
health services, decreases the likelihood of transmissible diseases and
keeps individuals alive.
The United States is experiencing an urgent and unprecedented drug
overdose crisis, with more than 100,000 overdose deaths expected to be
counted in 2020 and potentially more in 2021. Overdose deaths are
expected to have increased by more than 40% than the previous record
year of 2019. According to the Washington Department of Health,
overdose deaths accelerated in Washington in 2020, increasing by 38% in
the first half of 2020 compared to the first half of 2019. The
infectious diseases associated with opioid and other drug use also have
dramatically increased. Since 2010, the number of new hepatitis C
infections has increased by 380%. Outbreaks of viral hepatitis and HIV
among people who inject drugs continue to occur nationwide.
Overdose deaths have increased more dramatically among Black people
and communities of color. From 2015 to 2018, overdose deaths among
African Americans more than doubled (by 2.2 times) and among Hispanic
people increased by 1.7 times while increasing among white, non-
Hispanic people by 1.3 times. In Washington, the increase in overdose
deaths was highest among groups already dealing with inequitable health
outcomes: American Indian/Alaska Natives, Hispanic/Latinx, and Black
people.
SSPs are an essential component of preventing overdose deaths.
Tacoma Needle Exchange proudly services clients, who can exchange their
used injection supplies for sterile syringes, which helps prevent the
spread of blood-borne pathogens like HIV. Other services include safe
injection supplies, naloxone training and distribution, safer sex
supplies, and referrals for medication assisted treatment and other
medical services. Our outreach staff attempts to meet people where they
are at, and to help them address their needs in the safest and
healthiest way possible, free of judgement and stigma.
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 syringe services
programs (SSPs). 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 alcohol and other drug treatment and to other medical
care.
SSPs are the most effective way to get naloxone--a drug which
reverses an opioid overdose--into the hands of people who use drugs,
who are most likely to be at the scene of an overdose. People who use
drugs are an essential partner in preventing overdose fatalities and
are best reached by SSPs. With additional resources, SSPs can reach
more people with naloxone, which would help reduce the dramatically
increasing number of overdose deaths.
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% of respondents experienced an increase in clients in
2020, many as a result of the COVID-19 pandemic. During this time of
skyrocketing need, 42% of respondents experienced funding cuts in 2020
and expect such shortfalls to continue in 2021. As a response to
funding shortfalls, many SSPs have been forced to lay off staff and
reduce services. In King County service availability has been limited
so individuals experienced limited access to life saving interventions
like needle exchange and naloxone. Consequently, because of these
decreased and limited resources, SSPs cannot reach the millions of
people who may benefit from their life-saving services.
Federal funding would 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.
A recent 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 would provide an 10%
increase to currently operating SSPs to help address funding shortfalls
and also expand the number of SSPs nationwide.
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.
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 syringe services programs. In FY2019, CDC began
several projects to expand capacity of SSPs nationwide through
technical assistance to ensure high-quality, comprehensive services and
best practices. With additional FY22 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.
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 $120 million for the program in FY22. 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, Strategic
Adviser, Public Health-Seattle & King Co., King County, WA.]
______
Prepared Statement of the Pulmonary Hypertension Association
pha's fiscal year 2022 l-hhs appropriations recommendations
_______________________________________________________________________
--At least $46.1 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 FY2022 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 FY2022.
national institutes of health
Please provide NIH with meaningful increases--including at least
$46.1 billion in program funding in FY2022--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 access
The PH community is concerned that the Centers for Medicare and
Medicaid Services (CMS) is allowing insurance payers to refuse to
accept charitable copay and premium assistance on behalf of patients
with complex, chronic and life-threatening conditions like PH. Because
of breakthroughs in research, PH patients are able to utilize life-
sustaining treatments that allow them to manage this potential fatal
condition and lead relatively normal lives. When patients are denied
access to financial assistance they are forced to choose between
necessities: between dramatically shortening their lives by giving up
medication in order to afford housing and food or continuing medication
while starting their families on the road to bankruptcy. We aware of
the Subcommittee's continued requests for an explanation of this
practice targeting rare disease patients. We ask that this Subcommittee
once again ask CMS to explain this decisions and 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 three-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% chance of survival over the next five
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 FY2022 L-HHS Appropriations bill.
[This statement was submitted by Matt J. Granato, LL.M., MBA,
President and CEO, Pulmonary Hypertension Association.]
______
Prepared Statement of Reamer Andrew deg.
Prepared Statement of Andrew Reamer
I write to request that the report of the Senate Committee on
Appropriations accompanying appropriations legislation for Labor,
Health and Human Services, Education, and Related Agencies include
language that directs the Bureau of Labor Statistics (BLS), U.S.
Department of Labor, to provide memoranda to the Subcommittee, and to
the Senate Committee on Health, Education, Labor, and Pensions,
regarding the following topics:
--Approaches to accurately measuring the extent and nature of
telework and remote work in the United States, by geography and
industry, with the implications for future appropriations.
--Approaches to creating a new principal federal economic indicator
on well-being, with implications for future appropriations.
--Possible impacts of the Census Bureau's new Disclosure Avoidance
System on BLS data derived from Census Bureau statistics and
used to determine the allocation of federal financial
assistance to states, local areas, and households.
I provide information below in support of this request. I write as
a research professor at the George Washington Institute of Public
Policy, George Washington University, with a focus on the role of the
federal government in facilitating national economic development and
competitiveness.
Measures of Telework and Remote Work. News reports make clear that
the pandemic has catalyzed a substantial increase in the number of
employees who telework from home in lieu of commuting to an office and
those who work from a geographic location different than the office to
which they report. For the purposes of public policy and business
decision-making, BLS statistics should provide reliable estimates of
telework and remote work by geography and industry.
My research (available here) identifies 14 federal data collections
that independently measure the extent and nature of remote work. Eight
collected such data before the pandemic; six added telework questions
in response to the pandemic. Six are household surveys, six are
establishment surveys, and two prepare occupational profiles. Six are
conducted by BLS, five by the Census Bureau, and one each by the
Employment and Training Administration, the Federal Highway
Administration, and the Office of Personnel Management.
While BLS and other federal agencies are to be lauded for their
proactive efforts, it would be desirable to rationalize the plethora of
data collections so that BLS may point to a single data series as the
most appropriate measure. The choice made will have implications for
future appropriations. Consequently, I recommend that the Senate
Appropriations Committee report accompanying Labor Department
appropriations legislation include a directive that BLS provide the
Subcommittee with its views on the preferred approach to measuring
telework and remote work and resource requirements to implement it.
Measures of Well-being. Numerous scholars, such as Carol Graham of
the Brookings Institution and Angus Deaton and Anne Case of Princeton
University, demonstrate through their research the significant increase
in despair and deaths of despair, particularly among the white working
class. As with telework, several federal agencies are independently
seeking to measure the extent of and reasons for despair inside
American households and, at present, there is no single reliable,
consensus measure of well-being akin to Principal Federal Economic
Indicators such as the unemployment rate and the poverty rate.
For FY2021, Congress appropriated funds for BLS to conduct the
Well-Being Module of the American Time Use Survey (ATUS). I recommend
that Senate Appropriations Committee report language for FY2022
appropriations direct BLS provide the Subcommittee with its views on
approaches to creating a reliable, useful well-being indicator and the
resources necessary to produce it.
Impacts of Census Differential Privacy Protocols on BLS-guided
Federal Financial Assistance. To ensure adherence to Title 13
requirements for confidentiality, the Census Bureau is implementing a
new Disclosure Avoidance System (DAS) based on differential privacy
protocols that inserts distortions within certain agency datasets while
maintaining system-wide statistical accuracy. BLS labor force and price
statistics rely on Census Bureau data collections that may be affected
by the new DAS; several federal departments use BLS state and local
statistics, such as unemployment rate, to determine program eligibility
and allocate by formula billions of dollars in federal financial
assistance. At the moment, the effect of the new DAS on the geographic
allocation of federal funding is not understood. Consequently, I
encourage the Subcommittee to direct BLS to identify which of its
datasets might be affected by the new Census DAS and, by extension,
which federal funding programs might be affected as well, and how.
Note: I gathered the information contained above through my
sponsored research and as the research organization representative on
the Workforce Information Advisory Council (WIAC) of the U.S. Secretary
of Labor. I submit the above request as a private citizen and not as a
representative of any organization or body.
[This statement was submitted by Andrew Reamer, Research Professor,
George Washington Institute of Public Policy, George Washington
University.]
______
Prepared Statement of Research!America
On behalf of the Research!America alliance, thank you for this
opportunity to submit testimony to the Senate Appropriations
Subcommittee on Labor, Health and Human Services, Education, and
Related Agencies on Fiscal Year 2022 (FY22) appropriations. We are
grateful that for FY21, the base budgets of the National Institutes of
Health (NIH) and the Centers for Disease Control and Prevention (CDC)
were increased and the base budget of the Agency for Healthcare
Research and Quality (AHRQ) was maintained, and that the Subcommittee
additionally provided dedicated funding for critical research programs.
The need for faster medical and public health progress has never been
more apparent. Our nation has an opportunity, and on behalf of every
American, the obligation, to fight health threats faster, learn from
this pandemic to bolster public health capacity and preparedness, and
leverage evidence as never before to optimize health care delivery. In
that context, we ask that you provide an increase in the base budget
(exclusive of new initiatives) for NIH of at least $4.29 billion, for a
total of $47.22 billion; an increase of at least $2.18 billion for CDC,
for a total of $10 billion; and an increase of at least $162 million
for AHRQ, for a total of $500 million, in FY22.
the national institutes of health
We believe it is in the strategic interests of the U.S. to increase
funding for NIH to at least $47.22 billion in FY22, an increase of 10%
over FY21 funding. Our nation and the global community have witnessed
the broadscale impact of a global pandemic, but the reality is that
every American either experiences directly or is the loved one of an
individual who dies prematurely of a health threat that we can
overcome. NIH-conducted and funded research uncovers new knowledge that
is the prerequisite to conquering these threats. No entity, in the U.S.
or across the globe, has done more to propel academic and private
sector progress that saves lives.
NIH funds almost 50,000 competitive grants that are awarded to
researchers at over 500 universities, medical schools, and educational
institutions in every state. NIH also plays an integral role in
educating and training America's future scientists and medical
innovators by sponsoring fellowships and training grants.
We believe our nation should seize the opportunity to change the
course of history such that we can out-innovate emerging threats and
all live longer, healthier lives. Please allocate at least $47.22
billion in FY22 for the base budget of NIH, an increase of 10% over
FY21 funding.
the centers for disease control and prevention
We urge you to fund the Centers for Disease Control and Prevention
(CDC) at a level of $10 billion in FY22, a 27% increase over FY21
enacted. As demonstrated by the ongoing COVID-19 pandemic, public
health threats do not respect international borders, and in our
increasingly globalized world, we are more vulnerable than ever to
emerging, deadly infectious diseases.
CDC is tasked with protecting and advancing the nation's health,
and over the past 70 years it has worked diligently to thwart deadly
outbreaks and debilitating disease. Moreover, CDC plays a key role in
research that leads to life-saving vaccines, bolsters our nation's
defense against and response to bioterrorism, and improves health
tracking and data analytics.
CDC has been an integral part of the effort to mitigate and defeat
COVID-19. Their 24/7 response and the guidance that has emerged from
their efforts has empowered our nation to weather this pandemic, but
their role as the key first responder when major threats emerge is just
part of their contribution to Americans' health, safety, and wellbeing.
CDC is at the forefront of prevention; is working hard and
effectively to forestall antibiotic resistance; is the lead federal
agency responsible for tracking and forestalling foodborne illness and
other local and regional outbreaks; investigates cancer clusters; and
protects, investigates, and advances the health of every one of us in
myriad ways. Our nation has underfunded CDC at risk to every American:
we need to empower this agency to advance the best interests of every
American by protecting and advancing the health of all Americans.
The ongoing COVID-19 pandemic, in addition to past outbreaks of
Ebola, Zika, influenza, and measles, have shown just how critical CDC
is to the health of our nation and have also revealed the enormity of
the challenge the agency faces as it works to safeguard American lives.
To protect us, CDC scientists must be on the ground fighting public
health threats wherever and whenever they occur. We cannot allow a gap
between the funding provided to CDC and the demands and challenges
placed before the agency. We request that CDC receive at least $10
billion in FY22, $2.18 billion over FY21 funding, to ensure the agency
can carry out its crucially important responsibilities.
agency for healthcare research and quality
We urge you to fund AHRQ at a level of $500 million, a 47.9%
increase over FY21 funding, in FY22. AHRQ has been grossly underfunded
for decades relative to its mission and the lives and dollars this
agency could save if appropriately equipped. AHRQ is the lead federal
agency tasked with making sure our nation is not simply making medical
progress, but that this progress translates into more effective,
efficient, and affordable health care for Americans across the country.
As it stands, our nation overspends by an estimated $1 trillion each
year and abides deadly medical errors that cost at least 100,000 lives
each year because we don't deploy strategies to address inefficiencies
and errors in health care. Now is the time to empower AHRQ to address
this massive, counterproductive challenge.
AHRQ-funded research identifies and highlights how to stop waste of
limited health care dollars, empowering patients to receive the right
care at the right time in the right settings. For example, AHRQ-funded
research informed the creation of an Antibiotic Stewardship Program
(ASP) in 402 hospitals across the U.S. to address the overprescription
of antibiotics, which can ultimately lead to them being ineffective.
This research program successfully reduced the length of time patients
needed to be on antibiotic therapy by an average of 30 days. The
research also identified key improvements for future ASPs.
The value of medical discovery and development hinge on smart
health care delivery. If we underinvest in AHRQ, we are inviting
unnecessary health care spending and wasting the opportunity to ensure
patients receive the quality care they need.
We appreciate your consideration of our funding requests and thank
you, and your respective staff members, for your stewardship over these
critically important federal spending priorities.
Sincerely.
[This statement was submitted by Ellie Dehoney, Vice President of
Policy and
Advocacy, 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) 2022
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 standards of care features several
medications, which do not provide life-long coverage. One of the
established effective treatment options for this disease is low--total
daily dose opioid medications. These are commonly used when all other
drug classes have failed. Research and clinical experience indicates
that the dose of opioids typically used to manage RLS effectively
without addiction or drug tolerance issues is significantly lower than
dosages used to treat chronic pain.
fiscal year 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 2022 to bring NIH's budget up to
$46.1 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 $5,000,000 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, despite the fact that
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 of opioid
therapies to manage their debilitating condition. RLS is not a chronic
pain condition, and many in our community utilize these medications to
treat underlying neuropathology issues and not sensations of pain.
Studies have shown that appropriate access to these therapies allows
patients to live productive lives without an increased risk of
developing opioid use disorder. As you consider various legislative
proposals and work with federal agencies, please consider the needs of
patients who rely on the regular use of low total daily doses of
opioids to manage RLS by supporting a diagnosis-appropriate safe harbor
for RLS patients, so they do not face arbitrary barriers.
I would like to share with you the experience of 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
72hr psychiatric hold and sent me to a psych 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 Rotary International
Chairwoman Murray, members of the Subcommittee:
Rotary appreciates the opportunity to encourage continuation of
funding for FY 2022 to support the polio eradication activities of the
U.S. Centers for Disease Control and Prevention (CDC). The CDC is a
spearheading partner of the Global Polio Eradication Initiative (GPEI),
an unprecedented model of cooperation among national governments, civil
society and UN agencies which reach the most vulnerable children
through the safe, cost-effective polio immunization. Rotary
International requests the Subcommittee provide $176 million for the
polio eradication activities of the CDC to ensure recovery of polio
eradication progress disrupted by the COVID-19 pandemic, stop polio
transmission, protect polio free areas, and leverage the resources
developed through this global effort for continued value-added impact.
The 300,000 members of Rotary clubs in the US appreciate the United
States' generous support and longstanding leadership. Rotary, including
matching funds from the Gates Foundation, has contributed more than
$2.2 billion and thousands of hours of volunteer service to protect
children from polio; and will continue this work until the world is
certified polio free. Continued US leadership will help achieve a polio
free world and ensure the continued global health contribution of polio
eradication infrastructure and resources.
progress in the global program to eradicate polio
Since the launch of the GPEI in 1988, eradication efforts have led
to more than a 99.9% decrease in cases. Thanks to this committee's
support, over 19 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 2020, the WHO AFRO region was certified wild polio virus-free
after four years without detecting any cases, making it the fifth of
six WHO regions to eliminate the virus. This achievement follows the
certification of the eradication of Type 3 (WPV3) in October 2019 and
wild poliovirus type 2 (WPV2) in September 2015. The eradication of
wild polio virus from regions and eradication of strains of the polio
virus is further proof that a polio-free world is achievable.
Only two countries, Afghanistan and Pakistan, have confirmed cases
of wild polio since August of 2016. As of 3 June 2021, only 2 cases of
wild polio virus have been confirmed--one each in Pakistan and
Afghanistan. Significant reductions in detection of virus transmission
in environmental samples in 2021 are also cause for cautious optimism.
Both countries are working to capitalize on low levels of virus
transmission by working to reach missed children, prioritizing
communities which have had low coverage or which have been resistant to
immunization; and ensuring thorough microplanning of immunization and
other eradication activities. In Afghanistan, there are increased
efforts to target children living in areas which have been
inaccessible. This ongoing work is challenging within the context of
the NATO withdrawal of troops and related insecurity.
Outbreaks of circulating vaccine-derived poliovirus are ongoing in
several countries across Africa and Asia and require continued focus
and attention. These were further exacerbated by COVID-19 pandemic-
related disruptions in immunization campaigns. These outbreaks are not
a failure of the vaccine, but result from a failure to sustain
sufficiently high levels of routine immunization which causes the live,
but weakened form of the virus used in the vaccine to revert over time
to a more virulent, wild-like form. The program has developed a
specific Strategy for the Response to Type 2 Circulating Vaccine-
Derived Poliovirus, including the use of a new, more genetically stable
vaccine, the novel oral polio vaccine type 2 (nOPV2), for outbreak
response.
The COVID-19 pandemic has posed new challenges for global polio
eradication activities. In order to protect communities and staff, the
Global Polio Eradication Initiative paused immunization campaigns and
other essential activities for several months in 2020. In countries
that have successfully resumed activities, the programme has developed
strategies for prevention and control of COVID-19 and is providing
resources such as masks and hand sanitizer to keep frontline health
workers protected while ensuring that campaign elements meet physical
distancing requirements.
As a result of the pause on activities, and also due to the
potential exposure to COVID, the number of vulnerable children has
increased the real threat for wider spread of the virus. UNICEF, WHO
and Gavi estimate that at least 80 million children under the age of
one are at risk due to the COVID-19 related disruption to vaccination
activities. These challenges are further compounded by the
extraordinary economic and financial constraints in both at-risk
countries and from donors which may divert essential political and
financial commitments.
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. Specific support was also provided to expand
environmental surveillance to detect and respond to vaccine-derived
poliovirus outbreaks in Democratic Republic of the Congo, Nigeria,
Somalia, and Kenya.
CDC provides critical technical capacity and program management
expertise which directly contributes to polio eradication activities
and is also used to build in-country capacity.
--CDC supported the international assignment of technical staff on
direct 2-year assignments to WHO and UNICEF to assist polio-
endemic and polio-reinfected priority countries. Funding was
also provided to WHO for surveillance, technical staff and
immunization activities' operational costs, primarily in
Africa.
--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 2020, 210 public health professionals were deployed in 42
countries with two-thirds deployed to the African Region,
contributing substantially to the region's achievement of wild
polio-free status in 2020. STOP program participants worked to
improve broader vaccine-preventable disease (VPD) surveillance.
In 2020 STOP participants also supported local governments to
promote awareness of COVID-19 and provide contract tracing.
--In Afghanistan, CDC led a comprehensive data review in 2020 that
evaluated and streamlined data collection to increase
efficiency of the evidence-based decision making in campaigns.
--In Pakistan, CDC worked with the government to transform structural
and managerial components of the polio program. CDC and NSTOP
assumed a new role to improve evidence-based decision making
through data usage and risk assessment in the core reservoir
districts/towns. CDC also provided broad support to the COVID-
19 response in Pakistan, including trainings, case
identification, investigation and tracking, and lab sample
collection.
--CDC also provided expertise in technical advisory groups, EPI
manager and other key global polio meetings.
--CDC also provided instrumental support internationally and
domestically in the areas of disease surveillance, health
worker training, contact tracing, risk communications and
testing through extensive assignment of Atlanta-based polio
staff to the CDC COVID-19 response and through support provided
to the COVID-19 pandemic response by polio staff in
Afghanistan, Pakistan, and across Africa. CDC's commitment to
polio eradication is firm and knowing that CDC's polio
eradication program operates in some of the most vulnerable
places in the world, the agency is determined to do its part in
defeating the COVID-19 pandemic.
CDC also works to build Country-level Capacity.
--In collaboration with the Pakistan Ministry of Health, WHO and
USAID's mission in Islamabad, CDC trained 88 national
epidemiologists from CDC's Field Epidemiology Training Program
(FETP) and deployed them to the highest risk districts for
circulation of wild polio virus to help improve the quality of
surveillance and immunization activities there and to
strengthen routine immunization systems.
--CDC also trained and supported 230 staff at the Local Governing
Area level in the highest risk states through CDC's National
STOP program for Nigeria, playing a key role in interrupting
transmission of wild polio. CDC also contributed to UNICEF's
expansion of a Community Based Vaccinator Program in Pakistan
that includes over 24,000 workers who reach 4 million children
annually with both oral and inactivated polio vaccine (IPV);
and $3 million for operational costs for NIDs in all polio-
endemic countries and outbreak countries. Most of these NIDs
would not take place without the assurance of CDC's support.
CDC provided key leadership in development and rollout of novel
oral poliovirus vaccine (nOPV), a new tool for polio eradication
through preclinical development, laboratory testing and support for
nOPV clinical trials. The new vaccine has low neurovirulence, is
genetically stable (low reversion rate), can be scaled to production
levels, is highly immunogenic, and was safe and well tolerated in
vaccine trials. Initial use of nOPV2 is taking place in countries that
have secured national immunization and regulatory group approvals and
have met strict criteria.
fiscal year 2022 budget request
We respectfully $176 million in FY2022 for the polio eradication
activities of CDC, the level appropriated by Congress in FY 2021. CDC's
priorities are to stop virus transmission in the remaining polio
endemic and outbreak countries. CDC will also work with governments and
partners in countries experiencing cVDVP outbreaks to resume high
quality vaccination campaigns and to boost routine immunization to
close immunity gaps. This includes reaching an estimated 80 million
children who are vulnerable due to COVID-19 pandemic related
disruptions. CDC will also work to address pandemic-related
surveillance gaps to safeguard global disease detection and response
capacity. CDC will continue planning for a post-polio transition to
advance broader global vaccine-preventable diseases (VPD) control and
elimination/eradication targets as outlined in CDC's Global
Immunization Strategic Framework 2021-2030.
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 US$400 million
of the more than US$2.2 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 priority from the community level to the federal
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. A sustained polio free world will
generate $14 billion in expected cumulative cost savings by 2050, when
compared with the cost countries will incur for controlling the virus
indefinitely. Polio eradication is a cost-effective public health
investment with permanent benefits. As many as 200,000 children could
be paralyzed annually in the next decade if the world fails to
capitalize on the more than $18 billion already invested in
eradication. Success will ensure that the investment made by the US,
Rotary International, and many other countries and entities, is
protected in perpetuity.
[This statement was submitted by Anne L. Matthews, Chair, Rotary's
Polio
Eradication Advocacy Task Force.]
______
Prepared Statement of the Ryan White Medical Providers Coalition
Chairwoman Murray, Ranking Member Blunt, and members of the
Subcommittee, my name is Dr. Rachel Bender Ignacio and I serve as an
HIV primary care physician at the Madison Clinic and Director of the
AIDS Clinical Trials Unit at Harborview Medical Center in Seattle,
Washington. I am pleased to submit testimony on behalf of the Ryan
White Medical Providers Coalition (RWMPC) of the HIV Medicine
Association (HIVMA). I currently serve on the Board of Directors of
HIVMA. 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).
First, I would like to thank the Subcommittee for increasing FY21
funding for both the Ryan White Program and the Bureau of Primary
Health Care at HRSA by funding the bipartisan Ending the HIV Epidemic
(ETE) initiative. Supporting the ETE initiative will help target
jurisdictions scale up their ability to end the HIV epidemic by
increasing access to HIV testing, prevention, care, and treatment
services critical to reducing HIV transmission. However, expanding the
Ryan White Program even further now would help jurisdictions nationwide
address ending the HIV epidemic. To achieve this expansion, I request
$225.1 million (a 10% or $24 million increase) in FY22 for Ryan White
Part C, which supports approximately 350 HIV medical clinics
nationwide.
RWMPC also requests additional resources for the ETE initiative to
expand access to HIV prevention, care, and treatment, including $364
million for HRSA's ETE program. This funding would include $212 million
for the Ryan White Program to provide additional HIV care and
treatment, as well as $152 million for the Bureau of Primary Health
Care 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 FY22 budget request.
It is especially important now that increases for Ryan White Part C
or for the ETE initiative be new, additional funding and not a
repurposing of current resources. The additional pressure that the
COVID-19 pandemic has placed on public health infrastructure and
medical facilities, 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 living with HIV. Ryan White clinics have been critical to
providing an effective COVID-19 response and many Ryan White medical
providers have been pulled in as leaders of the pandemic response in
their jurisdictions. This has worked well as these providers are
infectious diseases experts who have significant experience caring for
vulnerable populations.
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.
Part C clinics have helped people with HIV by sustaining access to
health care and medication through telehealth and key services, such as
case management and transportation; by enrolling new patients who lost
their health insurance as a result of the economic downturn; and by
providing PPE, food, and housing security during this emergency.
Madison Clinic at Harborview Medical Center in Washington 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 2,800 individuals
living with HIV, most with complex medical and psychosocial needs.
Approximately 30% of our population is Black or African American
(Seattle overall has 7% Black representation), 15% is Latinx, and 10%
is Asian, Pacific Islander, or Native American. 47% 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% 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% of patients lack
permanent housing, and many patients were negatively impacted by the
intersection of housing instability; the opioid epidemic 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. 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 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 disease is infectious, so
identifying, engaging, and retaining individuals living with HIV in
effective care and treatment saves lives and benefits public health by
stopping HIV transmission when individuals are virally suppressed.
In 2019, more than 88% of Ryan White patients were virally
suppressed--an almost 27% increase in the program-wide viral
suppression rate since 2010. In 2020, 94% of Madison Clinic patients
have been virally suppressed in spite of the complex challenges the
COVID-19 pandemic has presented. The Ryan White Part C program's
comprehensive services engage and keep people in HIV care and
treatment. For example, 98% of HIV patients are on antiretroviral
therapy at Madison Clinic. Early, reliable access to HIV care and
treatment helps patients with HIV live healthy and productive lives and
is more cost effective.
Part C Clinics Are on the Frontlines of the Opioid Epidemic and Provide
SUD Treatment
Ryan White clinics serve a significant number of individuals living
with both substance use disorder (SUD) and HIV. 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 opioid epidemic and 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 $371 million for CDC to provide surveillance, response,
and other HIV prevention services as part of the ETE initiative, as
well as $120 million for CDC to address the infectious diseases
consequences of the opioid 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 epidemics and that
have informed the treatment and prevention of COVID-19.
Thank you for your time and consideration of these requests, and
please don't hesitate to contact me or Jenny Collier, Convener of the
Ryan White Medical Providers Coalition, at
[email protected] if you have any questions or need
additional information.
[This statement was submitted by Rachel Bender Ignacio, MD, MPH,
HIV
Physician and Clinical Researcher at the Madison HIV Clinic.]
______
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
almost 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 $100 million in FY21. 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 $150 million for the REO
program in FY22.
employment reduces recidivism and improve reentry outcomes
1 in 3 adults in the United States has a criminal record that
interferes with their ability to find a job.\1\ The COVID-19 pandemic
has underscored existing barriers to employment for people with
criminal legal histories. Research shows that sustained, living wage
employment and life skills are critical components to long-term reentry
success. One study found that individuals who were employed and earning
higher wages after release were less likely to return to prison within
the first year.\2\ 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.
---------------------------------------------------------------------------
\1\ ``Research Supports Fair-Chance Policies'' (March 2016),
National Employment Law Project, footnote 1 on p. 7. Available at
http://www.nelp.org/publication/researchsupports-fair-chance-policies.
\2\ Visher, C., Debus, S., & Yahner, J. Employment After Prison: A
Longitudinal Study of Releasees in Three States. Washington, DC: Urban
Institute (2008).
---------------------------------------------------------------------------
Authorized by section 169 of 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,\3\
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.
---------------------------------------------------------------------------
\3\ 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.
---------------------------------------------------------------------------
COVID-19 has impacted employment opportunities for people with
criminal legal histories. During the last economic downturn in 2008,
the unemployment rate for people with criminal legal histories was
27%--2 points higher than the unemployment rate during the Great
Depression. Increasing support for the REO program is an effective way
to ensure that individuals with criminal legal histories, who are
disproportionately Black people and people of color, are not left out
of the nation's economic recovery.
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 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 also works closely with employers to identify what
types of trained employees are needed. In November 2020, the National
Federation of Independent Business (NFIB) reported that 53% of
businesses overall (and 89% 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, and 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 FY22 to $150 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% of
participants obtained employment--15% 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%--30% 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% recidivism
rate, and its second participant cohort had a 9% recidivism rate--75%
and 80% lower respectively than the national recidivism rate of 44%.\4\
---------------------------------------------------------------------------
\4\ Durose, Matthew R., Alexia D. Cooper, and Howard N. Snyder,
Recidivism of Prisoners Released in 30 States in 2005: Patterns from
2005 to 2010 (pdf, 31 pages), Bureau of Justice Statistics Special
Report, April 2014, NCJ 244205.
---------------------------------------------------------------------------
Program evaluation has shown that such success is related to the
comprehensive service model that grantees such as Safer provide.
Effective, comprehensive services can include interventions such as
relationship building between staff and participants, employment
verification, trauma-informed training, life skills training,
employment preparation, mentoring, intensive case management, strong
training provider relationships and support, family involvement, and
post-release follow-up and support. These comprehensive services are
cost-effective--a 2016 Illinois study found that for every $1 invested
in community-based employment and training programs, tax payers saw a
net benefit of $20.26, and found that employment and training programs
had the highest cost-benefit ratio for reducing recidivism.\5\ 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.
---------------------------------------------------------------------------
\5\ Illinois Sentencing Policy Advisory Council (2016). A Cost-
Benefit Tool for Illinois Criminal Justice Policymakers, pp. 2-3:
http://www.icjia.state.il.us/spac/pdf/Illinois_Results_First_
Consumer_Reports_072016.pdf, pp. 2-3.
---------------------------------------------------------------------------
investments in reentry programs are consistent with the fy22
president's budget request
Reentry and workforce development are a priority for the current
administration, and the FY22 President's Budget requests includes $150
million for the REO program to provide support for ``reentry services,
and recidivism-reducing programming...'' The budget request also calls
for increases in skills-building that ``advances the goal of developing
pathways for diverse workers to access training and career
opportunities by also investing in critical programs that serve
disadvantaged groups, including justice-involved individuals, [and] at-
risk youth.''
The REO funding request also is consistent with the
administration's goal of pursuing racial equity. 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.
Finally, the REO program is critical for economic recovery for
people with criminal legal histories, especially Black people and
people of color, who also have been disproportionately impacted by
COVID-19. There has been very limited COVID-19 relief for incarcerated
people and people with criminal legal histories, and REO is the only
federally appropriated program that focuses on workforce development
and employment for people with records (1 out of 3 adults in the U.S.
has an arrest or conviction record). As the economy recovers and
workforce needs continue to evolve and change, it is essential to
ensure that this significant population has the reentry and workforce
supports to facilitate gainful employment and long-term reentry
success.
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 $150 million to the REO program in FY22.
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 or Jenny Collier at
[email protected].
[This statement was submitted by Kevin Brown, Director of Policy,
Advocacy, and Legislative Affairs.]
______
Prepared Statement of the Scleroderma Foundation
the foundation's fiscal year 2022 l-hhs appropriations recommendations
_______________________________________________________________________
--$10 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).
--$5 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 $46.1 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
FY2022 L-HHS Appropriations Bill.
about scleroderma
Scleroderma is a chronic connective tissue disease affecting
approximately 300,000 Americans. The word scleroderma means hardening
of the skin, which is one of the most visible manifestations of the
condition. The cause of this progressive and potentially fatal disease
remains unknown. There is no cure, and treatment options are limited.
Symptoms vary greatly and are dependent on which organ systems are
impacted. Prompt diagnosis and treatment by a qualified physician may
improve health outcomes and lessen the chance for irreversible damage.
Serious complications of the disease can include pain, skin ulcers,
anemia and pulmonary hypertension.
about the foundation
The Scleroderma Foundation is dedicated to the concerns of people
whose lives have been impacted by the autoimmune disease scleroderma,
also known as systemic sclerosis, and related conditions. The
foundation's mission is to 1) support individuals affected, 2) promote
education and public awareness, and 3) advance critical research and
improve scientific understanding to improve treatment options and find
the causes and a cure. The foundation has a research program that funds
basic, translational and clinical research through a peer review
process to find the cause and cure for scleroderma and related
conditions.
centers for disease control and prevention
Early recognition and an accurate diagnosis of scleroderma can
improve health outcomes and save lives. CDC in general and the NCCDPHP
specifically have programs to improve public awareness of scleroderma
and other rare, life-threatening conditions. Please increase funding
for CDC and NCCDPHP so that the agency can invest in additional,
critical education and awareness activities that have the potential to
improve health and save lives. The Foundation supports the 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 inexorably linked to other manifestations of fibrosis
such as cirrhosis, pulmonary fibrosis, and the fibrotic damage
resulting from heart attack. Scleroderma is a prototypical
manifestation of fibrosis as it impacts multiple organ systems. In this
way, it is important to promote cross-cutting research across such
Institutes as NIAMS and NHLBI.
Please provide NIH with a significant funding increase to the
scleroderma research portfolio can continue to expand and facilitate
key breakthroughs.
--NIH continues to support the Trans-NIH Working Group on Fibrosis
which is working to promote cross-cutting research across
Institutes.
--NHLBI, which is leading Scleroderma Lung Study II, is comparing the
effectiveness of two drugs in treating pulmonary fibrosis in
scleroderma.
--NIAMS, is leading efforts to discover whether three gene expression
signatures in skin can serve as accurate biomarkers predicting
scleroderma, and investigations into progression and response
to treatment to clarify the complex interactions of T cells and
interleukin-31 (IL-31) in producing inflammation and fibrosis,
or scarring in scleroderma.
patient perspective
``My constantly aching hands begged for mercy of just one day
without pain. My joints started to feel like they were being torn away
from my body. Anytime I touched something cold, my hands would tingle
and burn. Painful sores started appearing on my knuckles. You stole my
skin color and with that went my confidence. It was like I was turning
into a mummy as my skin tightened with collagen, day by day. I was
beginning to need help performing small tasks. Opening a water bottle
or turning a key in the door started to become difficult. Standing for
long periods of time made my hips radiate with pain. In 2012 I had to
stop working, at 24 years old. The definition of normal as I knew it
was being torn down and built into something completely new. And so was
my soul.
I now need help with everything! Getting dressed, washing my hair,
cleaning, doing laundry; pretty much anything I have to use my hands
for. You stole my independence. I had to learn to swallow my pride and
ask for help. It's a tough thing to do, especially when you're at an
age that's supposed to be your prime. Friends and family around me have
blossomed into caregivers and helping me has become second nature to
them. It's a beautiful thing when those surrounding you automatically
adapt to your disability. Support is the lifeboat that keeps me
afloat.''
--Excerpt from ``My Letter to Scleroderma''
Jessica Messingale
Coconut Creek, Florida
[This statement was submitted by Mr. David Murad, Director of
Advocacy, Scleroderma Foundation.]
______
Prepared Statement of the Seattle Indian Health Board
Chair Murray, Ranking Member 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, and of Latina descent and as the third generation in my family
to live 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 Health Programs (UIHP) nationwide.
I have had the privilege of serving SIHB for five years. I am honored
to have the opportunity to submit my testimony today, including a
request for the following 1) Address Department of Health and Human
Services (HHS) grant eligibility and grant restrictions 2) Develop an
HHS urban confer policy; 3) Ensure HHS public health data access to
Tribal Epidemiology Centers (TEC) 4) Create National Institutes of
Health (NIH) research funding opportunities specific to urban Indian
populations; 5) Invest in Indian healthcare and public health
infrastructure, including culturally attuned integrated workforce
development.
indigenous resilience in action
I would like to thank the Subcommittee for COVID-19 supplemental
funding which has included at least $18 million for UIHPs from the
Centers of Disease Control and Prevention (CDC); $9.5 billion for
Federally Qualified Health Centers (FQHC) from the Health Resources and
Services Administration (HRSA), and; at least $140 million to Indian
Health Care Providers through the Substance Abuse and Mental Health
Services Administration (SAMHSA). Supplemental funding has demonstrated
how successful and resilient our Indian healthcare system can be when
properly resourced. I would also like to acknowledge the President's
Budget for FY 22 which includes $131.7 billion for HHS, including $12.6
billion for HRSA, and $9.7 billion for SAMHSA. We hope President
Biden's proposed increases will support significant investments to
FQHCs, tribal and urban Indian populations, and reducing chronic health
disparities in Black, Indigenous, and Communities of Color (BIPOC).
As one of 41 Indian Health Service (IHS) designated UIHPs and a
HRSA 330 FQHC, SIHB serves over 5,000 patients annually of which 70%
identify as American Indian and Alaska Native. UIHPs are a critical
component of the Indian healthcare system and offer culturally attuned
health services to the 2.2 million American Indians and Alaska Natives
who live in 115 counties across 24 states. We also house the Urban
Indian Health Institute (UIHI), an IHS designated TEC and public health
authority, which conducts research and evaluation, collects and
analyzes data, and provides disease surveillance for 62 urban Indian
communities nationwide.
As an Indian Health Care Provider, we are actively limiting the
spread of COVID-19 in tribal and urban Indian communities. In December
2020, SIHB was the first organization in Seattle to receive a shipment
of the Moderna vaccine and since has vaccinated over 12,500
individuals. Locally, we serve as a COVID-19 testing site at our main
clinical facility and operate a community-based walk-up testing site at
our satellite clinic serving American Indian and Alaska Native people
experiencing homelessness in Seattle, Washington. With the support of
federal supplemental funding, we continue to secure pharmacy supplies
and equipment to respond to the immediate and forthcoming COVID-19
needs in the greater Puget Sound region, including testing kits,
panels, and a diagnostic testing machine to improve testing capacity
and response times. We have implemented a telehealth program, expanded
outpatient behavioral health services, provided rental assistance, and
developed a pediatrics clinic to increase child immunization rates.
Throughout the pandemic, UIHI has disseminated culturally attuned
COVID-19 information through fact sheets, reports, and a COVID-19
Vaccine Poster series to address vaccine hesitancy in the Native
community. Recently, UIHI launched For the Love of Our People, a
webpage dedicated to bringing Native health experts and creatives to
provide engaging, up-to-date information about COVID-19 vaccines and
COVID-19 related topics. UIHI has also led local to national public
health surveillance for UIHPs through weekly reporting and analysis of
local to state COVID-19 case surveillance data.
continued gaps for urban indian organizations
Address Department of Health and Human Services (HHS) grant
eligibility and grant restrictions: UIOs offer culturally responsive
services for the 71% of American Indians and Alaska Natives in urban
areas. Given that the average IHS grant to an UIHP is $280,000, most
UIHPs must seek additional resources from HHS agencies to ensure robust
access to health and social services that allow our communities to
thrive. Yet, many HHS agencies exclude UIHPs from grant eligibility or
apply restrictive grant terms that hinder our ability to provide
culturally specific and low-barrier services. To ensure HHS resources
for American Indian and Alaska Native people fulfill trust and treaty
obligations, we ask Congress to:
Ensure Urban Indian Organizations are included in grant
eligibility: If the intent of Congressional funds is to reach all
American Indian and Alaska Native people, then legislative and
administrative language must include 'tribes, tribal organizations, and
Urban Indian Health Programs as defined in Section 4 of the Indian
Health Care Improvement Act (authorized under 25 U.S.C. Ch. 18.
Subchapter IV Sec. 1653). This ensures federal resources reach American
Indian and Alaska Native people, regardless of where they reside.
Address barriers created by GPRA tools: Current requirements of the
Government Performance and Results Act (GRPA) performance data
is burdensome to patients and providers. To operate a truly
culturally attuned and low-barrier Medication Assisted
Treatment (MAT) programs, we must address the longstanding
issues with cumbersome and onerous GPRA reporting requirements.
For example, SIHB provides an unduplicated service of low-
barrier MAT services for urban American Indians and Alaska
Natives who are disproportionately affected by substance use in
Washington State. Our American Indian and Alaska Native
patients come to SIHB for our integrated patient-centered care
model that promotes the wellness of our patients and is
centered on Traditional Indian Medicine. Lengthy and invasive
GPRA survey tools directly affect our service delivery system
to provide accessible low-barrier and culturally attuned MAT
services. We ask that Congress address barriers created by GRPA
tools to better support culturally attuned and low barrier
services provided by Indian Health Care Providers.
Develop an HHS urban confer policy: To ensure trust and treaty
obligations are upheld to all American Indian and Alaska Native
citizens, we request the development of an Urban Confer policy across
all agencies and departments within HHS jurisdiction. The federal
government has an obligation to consult with Tribal Nations on issues
that impact tribal communities. In the Indian healthcare system, UIHPs
have an Urban Confer mechanism with the IHS that provides an
opportunity for an exchange of information and opinions that lead to
mutual understanding and emphasize trust, respect, and shared
responsibility between UIHPs and government agencies. Urban Confer
policies do not substitute for nor invoke the rights of a Tribe as a
sovereign nation. An Urban Confer supports the advocacy for the urban
Indian community by Indian Health Care Providers who are part of the
Indian healthcare system.
The importance of an Urban Confer was made evident in the COVID-19
supplemental resources from Congress. Without an Urban Confer policy,
HHS agencies outside of IHS had no formal mechanism for gathering
feedback from UIOs and vice versa. As a result, submitting feedback to
HRSA, SAMHSA, and the CDC was a significant barrier to accessing COVID-
19 supplemental resources for UIOs. For example, the CDC created a
funding opportunity for 11 of the 12 TECs by selecting a grant
mechanism that failed to include UIOs as eligible entities. This
barrier leaves UIOs without access to federal resources, despite
Congressional intent.
Ensure HHS public health data access to Tribal Epidemiology Centers
(TEC): Despite Congressional authorization to access HHS data as a
public health authority, CDC continues to deny UIHI and other TECs
access to data collected through the National Notifiable Disease
Surveillance System (NNDSS). Timely analysis of NNDSS data and other
CDC collected COVID-19 data is critical to supporting both tribes and
UIOs to prevent, prepare, and respond to system health inequities
experienced by American Indian and Alaska Native communities. A failure
to uphold data access perpetuates systemic health inequities in
American Indian and Alaska Native communities. With the limited COVID-
19 case surveillance data provided, TECs have been able to monitor,
evaluate, and respond to COVID-19 through contact tracing, primary
collection and secondary analysis of epidemiological data, and
development of culturally attuned public health resources. The COVID-19
resources developed by TECs range from public health guidance to
treatment and vaccine information that have been disseminated to
tribes, tribal organizations, UIOs, and government agencies. We ask
Congress to ensure compliance with data sharing requirements by all HHS
agencies with TECs.
Create NIH research funding opportunities specific to urban Indian
populations: Current NIH initiatives often are not inclusive of urban
Indian populations, despite 71% of all American Indian and Alaska
Native people living in urban settings and a growing body of
documentation of health disparities among urban Native populations. In
addition, the COVID-19 pandemic has highlighted the lack of diversity
in clinical trials which perpetuates bias in research studies. In
Indian Country, the lack of an American Indian and Alaska Native
population samples in clinical trials contributed to vaccine hesitancy
and has been used by anti-vaccination advocates to push misinformation
into Native communities. We do not advocate for taking away funding for
tribally based research. Instead, we urge Congress to ensure NIH create
dedicated funding for research and clinical trials that are inclusive
of urban Indian populations.
Invest in Indian healthcare infrastructure:
Public health infrastructure: The COVID-19 pandemic has exacerbated
the crumbling infrastructure of our public health systems,
specifically data systems. Many of the data quality issues
identified by UIHI in the Data Genocide report are linked to
outdated public health data infrastructure systems that limit
the ability to appropriately collect and report data for
national public health surveillance and epidemiology. There is
an urgent need to invest significant resources in data
modernization, specifically across our Indian healthcare
system--including tribal health programs, UIHPs, and TECs. Data
modernization increases inter-operability of data systems and
advances data standards so information can be stored and shared
across systems, and facilitate complete reporting of data
critical for achieving equity in public health responses. We
recommend an increased investment dedicated to infrastructure
improvement and construction specifically for UIHPs that does
not divert any resources from tribal communities that are also
in desperate needs of public health infrastructure investments.
UIHP healthcare facilities: There is no national level data on the
infrastructure needs of UIHPs, yet we know from experience our
facilities are inefficient and overcrowded, which compromises
the provision of critical health services and contribute to
health disparities among urban Indian communities. UIHPs are
ineligible for the Health Care Facilities Construction line
item in the IHS budget. Recent COVID-19 supplements have
allowed for some flexible spending to address the overwhelming
infrastructure needs of UIHPs, yet lack we still lack the
resources needed to develop integrated care settings that are
patient-centric and culturally attuned. We ask that Congress
identify resources for UIHPs for the construction, expansion,
alteration, and renovation of healthcare facilities.
Culturally attuned integrated workforce development: Our healthcare
systems are in need of additional investments to fulfill
integration of behavioral health and medical care. A 2018 GAO
report on IHS found a 25% vacancy rate for nurses, physicians,
and other care providers. It is a critical time to make
targeted investments in building up a culturally attuned
workforce across the Indian healthcare system that is prepared
to provide integrate care that address pervasive health
disparities among American Indian and Alaska Native
populations. We ask Congress to invest in recruitment and
retention of health professionals to address chronic health
care provider shortages in Indian Country.
Thank you for your support and consideration of the requests. We
look forward to our continued work to improve the health and well-being
of American Indian and Alaska Native people.
Sincerely.
[This statement was submitted by Esther Lucero (Dine), MPP,
President & CEO, Seattle Indian Health Board.]
______
Prepared Statement of the Sleep Research Society and Project Sleep
fiscal year 2022 appropriations recommendations
_______________________________________________________________________
--The sleep community joins the broader research community in
requesting $46.1 billion in discretionary funding for the
National Institutes of Health (NIH), an increase of $3.2
billion over FY 2021. 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 support adequate funding to establish the new Advanced
Research Projects Agency for Health (ARPA-H) at NIH as
proposed in the Administration's Budget Request to Congress
to facilitate robust and tangible scientific progress on a
variety of conditions.
--The sleep community joins the broader public health community in
requesting $10 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 new CDC Chronic Disease Education and
Awareness Program with $5 million, an increase of $3.5
million over FY 2021, 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
2022 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 2021
appropriations, particularly for establishing and funding the new CDC
Chronic Disease Education & Awareness Program. Please bolster the
commitments to NIH and, in particular, CDC as you and your colleagues
work on appropriations for FY 2022.
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 pulmonology,
psychology, neurology, pharmacology, cardiology, immunology,
metabolism, genomics, learning and memory, 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
Over recent years, NIH has seen a meaningful infusion of critical
funding. This investment has improved grant funding pay lines, led to
significant scientific advancements, and helped to prepare the next
generation of young investigators. For FY 2014, the sleep research
portfolio at NIH was $233 million annually. For FY 2020, the sleep
research portfolio at NIH had grown to $436 million annually, which has
been transformative for the field. However, there are still meaningful
opportunities for further scientific progress and improved patient
care.
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.
Sleep Health & Health Disparities
Racial-ethnic minorities are more likely to get insufficient sleep,
and are more likely to have sleep disorders. Since sleep plays
important roles in cardiovascular function, metabolism, immunity,
mental health, and brain function, this sleep disparity creates a
situation where racial/ethnic minorities are systematically set up for
worse health outcomes. Not only does poor sleep lead to worse outcomes
on its own, it interacts with other conditions, worsening the already-
important problems associated with heart disease, diabetes, obesity,
cancer, depression, and other medical conditions. The causes of these
sleep disparities are complex and involve a combination of
socioeconomic, environmental, and other factors. Unfortunately, there
is almost no research on targeting sleep disorders diagnosis and
treatments for racial/ethnic minorities, and securing funding for sleep
disparities research is extremely difficult. As NIH works to address
health disparities, promote health equity, and enhance workforce
diversity, sleep and sleep research should be incorporated into
emerging activities.
National Heart, Lung, and Blood Institute/National Center on Sleep
Disorders Research
NCSDR has a new Director, Dr. Marishka Brown, who is taking the
field of sleep research in new and exciting directions while
reinvigorating the enthusiasm for sleep research across the federal
government. Under Dr. Brown's leadership, NCSDR is preparing to release
a strategic plan for research. We ask Congress to provide Dr. Brown
with the support she needs, including adequate resources for NHLBI and
NCSDR to coordinate ongoing and emerging initiatives.
CDC Chronic Disease Education & Awareness Program
Thank you for establishing the CDC Chronic Disease Education &
Awareness program and providing an initial investment of $1.5 million
for FY 2021. CDC currently lacks meaningful public health activities
focused on sleep and the community plans to engage this new funding
mechanism. For FY 2022, please provide $5 million in annual support.
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.
[This statement was submitted by H. Craig Heller, PhD, President,
Sleep
Research Society and Project Sleep.]
______
Prepared Statement of the Society for Maternal-Fetal Medicine
On behalf of SMFM, I am pleased to submit testimony in support of
the important work related to optimizing the health of birthing people
and infants being conducted at HHS for FY 2022. 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 FY 2022. Specifically, SMFM urges the
Committee to provide at least the following in base program level
funding:
--$46.1 billion for the NIH, with $1.7 billion of that funding to
support the Eunice Kennedy Shriver National Institute of Child
Health and Human Development (NICHD);
--$10 billion for the CDC, including $89 million for the Safe
Motherhood Initiative, $100 million for the Surveillance for
Emerging Threats to Moms and Babies initiative, and $200
million for the National Center for Health Statistics (NCHS);
--$9.2 billion for the HRSA, including $822.7 million 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 5,000 individuals, the core of
SMFM's membership is comprised of maternal-fetal medicine (MFM)
subspecialists. MFM subspecialists are obstetricians with an additional
three years of formal education and who are board certified in MFM
making them highly qualified experts and leaders in the care of
complicated pregnancies. Additionally, SMFM welcomes physicians in
related disciplines, nurses, genetic counselors, ultrasound
technicians, MFM administrators, and other individuals working 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 children.
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.
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, which was
convened by NICHD. PRGLAC submitted its report to the Secretary in the
fall of 2018 with 15 recommendations on including pregnant and
breastfeeding people in clinical trials and broad research initiatives,
and the Task Force further outlined how to implement those
recommendations in a follow-up report submitted to the Secretary of
Health and Human Services in 2020. In that implementation report, the
PRGLAC Task Force described the need to convene an expert panel to
develop a framework for addressing medicolegal and liability issues
when planning or conducting research specific to pregnant people and
lactating people. SMFM requests $1.5 million for NICHD to contract with
the National Academies of Sciences, Engineering, and Medicine to
convene a panel tasked with developing that framework (language below).
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 lifesaving interventions and treatments can
be addressed for mother and their infants.
NICHD Report Language
Liability Study.--Pregnant and Lactating Individuals. The
Committee includes $1,500,000 for NICHD to contract with NASEM
to convene a panel with specific legal, ethical, regulatory,
and policy expertise to develop a framework for addressing
medicolegal and liability issues when planning or conducting
research specific to pregnant people and lactating people.
Specifically, this panel should include individuals with
ethical and legal expertise in clinical trials and research;
regulatory expertise; plaintiffs' attorneys; pharmaceutical
representatives with tort liability and research expertise;
insurance industry representatives; federally funded
researchers who work with pregnant and lactating women;
representatives of institutional review boards (IRBs) and
health policy experts.
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.
---------------------------------------------------------------------------
\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.
---------------------------------------------------------------------------
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.
For instance, 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 2019 was 20.1 deaths per 100,000 live births, and
racial disparities persisted with a maternal mortality rate of 44.0 per
100,000 live births among non-Hispanic black women compared to 17.9
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 provide at least $89 million for this
work. Of that, we ask Congress to allocate the full $43 million
included in the President's FY 2022 budget request to fund additional
state MMRCs.
---------------------------------------------------------------------------
\2\ Hoyert DL. Maternal mortality rates in the United States, 2019.
NCHS Health E-Stats. 2021.Available at https://www.cdc.gov/nchs/data/
hestat/maternal-mortality-2021/maternal-mortality-2021.htm.
---------------------------------------------------------------------------
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 $822.7 million 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 2022, 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 DeLauro, Ranking Member Cole, and members of the
Subcommittee, on behalf of the Society for Neuroscience (SfN), we are
honoured 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 $46.1 billion, a $3.2 billion increase
over FY21, in funding for existing institutes and centers at NIH for
FY22, including $496 million from the NIH Innovation Account for 21st
Century Cures programs and $560 million for the Brain Research through
Advancing Innovative Neurotechnologies (BRAIN) Initiative. Dr. Moses
Chao and I, as Chair of the Government and Public Affairs Committee and
President of SfN respectively, understand the critical importance of
federal funding for neuroscience research in the United States. I
currently serve as a researcher and as a Professor in the Department of
Psychology at Cambridge University and Dr. Chao is a professor of Cell
Biology, Physiology and Neuroscience, and Psychiatry at the New York
University School of Medicine. Our research serves as two examples of
the wide variety of neuroscience research advancing our collective
understanding of the brain.
My own research focuses on the neural and psychological basis of
drug addiction and is dedicated to understanding the maladaptive
engagement of the learning, memory, and motivational mechanisms
underlying compulsive drug use. Drug abuse and addiction have
devastating consequences at the individual, family, and society levels.
My research group made significant advances in showing structural and
neurochemical changes in the brain associated with behavioral
impulsivity confer a major risk on vulnerability to develop cocaine
addiction. We have also demonstrated the neural circuit basis of
transition from recreational to compulsive use of opioids, stimulants,
and alcohol, revealing commonalities as well as differences in the
neural basis of addiction to these drugs. This understanding has opened
the door to development of novel pharmacological and psychological
treatments for addiction that may promote and maintain abstinence from
drug use.
Dr. Chao's research efforts focus on growth factors (also called
neurotrophins) in the brain. These proteins are crucial for everything
from neuron differentiation, growth, and survival during development to
learning and memory in children and adults. Deficits in neurotrophins
are involved in neurodegenerative disorders such as Alzheimer's,
Parkinson's and Huntington's diseases, and Amyotrophic Lateral
Sclerosis (ALS), as well as limiting recovery after stroke or brain
injury.
Dr. Chao and I cover different areas of neuroscience research,
though we have come together to convey the need for further and ongoing
investment in neuroscience research. 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 six years. Growing the NIH budget over $12 billion in
that period is exactly the kind of sustained effort that is needed, and
your continued support will pay dividends for years to come.
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 a 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 American's Research and Development (R&D)
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. This important first
step is not ordinarily funded by industry given the long-term path of
basic science and the pressures for shorter-term return on investments
by industry. Congressional investment in basic science is irreplaceable
on the pathway for development of drugs, devices, and other treatments
for brain-related diseases and disorders.
For example, in 2019, NIH launched--at Congress's direction--the
cross-institute Helping to End Addiction Long-term (HEAL) Initiative to
respond to the ongoing opioid public health crisis. Through this
program, NIH supports the development of new medications to treat all
aspects of the opioid addiction cycle and invests in preclinical and
translational research in pain management. This work is vital to the
translation of exciting new discoveries in the treatment of addiction.
In our lab, we have shown a novel opioid receptor antagonist greatly
decreases opioid, cocaine, and alcohol use in animal models, as well as
showing its efficacy and safety in experimental studies in humans. We
have further revealed reducing the impact of maladaptive drug memories
can promote abstinence from drug use, as well as be effective in
treatment of anxiety disorders and post-traumatic stress disorder
(PTSD). The NIH, especially NIDA and NIAAA, supports the great majority
of the global research on addiction and its treatment; this is a
shining example of how governmental funding for research in the US
leads the world and inspires related and collaborative research
internationally on this major brain disorder.
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 would be
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 FY22.
Some recent exciting advancements in NIH funded neuroscience research
include the following:
Personalized Medicine for Treating Depression
Major depressive disorder (often referred to as ``depression'') is
one of the most common mental disorders in the United States, affecting
more than 17 million adults each year in the United States alone. While
there have been great strides in pharmacological treatments for
depression, a patient's response to any given antidepressant will vary
widely based on their particular brain chemistry. A group of
researchers funded by NIH recently used a machine learning algorithm to
analyze patients' brain waves and predict their response to sertraline,
a popular antidepressant. These data were taken from an NIMH funded
study that used electroencephalography (EEG) to measure the brain's
response to taking either a placebo or sertraline. Using an algorithm
specially designed to analyze EEG data, the researchers were able to
predict whether patients would respond to sertraline treatment based on
brain waves measured before treatment. This work is a critical step
towards quickly determining the most effective treatment for patients
based on their personal brain chemistry and illness.
Understanding How COVID Affects the Brain
In addition to its well-documented effects on the respiratory
system, it has become clear that SARS-CoV-2, the virus responsible for
COVID-19, has a profound effect on the brain, with neurological
symptoms from dizziness and mental fogginess to encephalitis and stroke
appearing in COVID-19 patients. SARS-CoV-2 has been found in the
cerebrospinal fluid (CSF) of some of these patients, indicating the
virus was able to cross into the brain. To understand how the virus
could enter the brain, researchers with NIH COVID-19 research funding
used stem cells created from human skin cells to make clusters of brain
cells called organoids. These organoids were made of cells found in
different areas of the brain, and the researchers found that SARS-CoV-2
had a high infection rate for cells from a specialized region called
the choroid plexus. The choroid plexus is the region of the brain that
creates the CSF cushioning the brain and spinal cord; it is known as a
site of infection for other viruses. This finding provides a lead on
the location through which SARS-CoV-2 may be entering the brain and a
potential target for developing treatments of the neurological effects
of COVID-19.
covid-19 is a challenge and opportunity for neuroscience research
Unfortunately, the COVID-19 pandemic slowed progress in
neuroscience research, with social distancing requirements hampering
ongoing research related to the brain. Investment in neuroscience
research, including on the neurological aspects of the SARS-CoV-2 virus
and the COVID-19 pandemic itself is needed but cannot be allowed to
eclipse or replace regular funding for neuroscience research. We urge
you to identify ways to ensure current necessary funding increases to
address the COVID-19 emergency do not slow progress on other important
and innovative research, including the groundbreaking research in
neuroscience and mental health. SfN is grateful Congress requested NIH
seek to understand the psychosocial and behavioral health consequences
of COVID-19. SfN encourages the Subcommittee to fund basic research on
the biology of COVID-19 impacts on brain function as well as impacts on
the nervous system in preclinical models and, by extension, on humans.
In doing so, SfN encourages Congress and the NIH to prioritize
intentional collaboration and coordination to effectively allocate
scarce resources so researchers may investigate all facets of
infectious and non-infectious disease.
Ongoing research already demonstrates the need for scientists to
examine the neurological impacts of COVID-19. While mortality due to
SARS-CoV-2 may be primarily due to its effects on the lungs, it is now
apparent the virus damages many other organs, including the central
nervous system. We need to understand how these direct and indirect
effects on other organ systems are producing chronic diseases and long-
term disability, making people more susceptible to other chronic
disorders covered by the different NIH Institutes. A recent study
(Lancet article, Taquet et al 2020) shows an increased risk of
psychiatric conditions after COVID-19 diagnosis. Symptoms, such as
anxiety, depression, post-traumatic stress disorder, and insomnia were
reported. These data, though incomplete, suggest brain impairment
occurs as a result of COVID-19 infection. Furthermore, it was found
people with two copies of the risk gene for Alzheimer's disease were
more likely to have severe COVID-19 (Kuo et al J. Gerontology 2020).
These findings, coupled with incidents of memory loss, brain fog and
hallucinations reported in the New York Times (3/23/21) demand
increased resources to study the impact of this virus on the peripheral
and central nervous systems, as well as the immune and inflammatory
systems. The COVID-19 public health emergency provides an important
example of the critical need for collaborative research and
coordinating data and resources across institutes. A balanced and
collaborative research effort across institutes will likely be the path
toward solving these multiple issues.
congress & nih must support access to models necessary for neuroscience
discovery
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 primate 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 research can continue.
funding in regular order
SfN joins the biomedical research community supporting an increase
in NIH funding to at least $46.1 billion for existing NIH institutes
and centers, a $3.2 billion increase over FY21. 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
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 your strong and 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 this strong support of biomedical
research.
[This statement was submitted by Barry Everitt, Sc.D., F.R.S.,
President, and Moses Chao, PhD, Chair, Government and Public Affairs
Committee, Society for Neuroscience.]
______
Prepared Statement of the Society for Women's Health Research
On behalf of the Society for Women's Health Research (SWHR)--whose
mission is dedicated to promoting research on biological sex
differences in disease and improving women's health through science,
policy, and education--I am pleased to submit testimony describing
SWHR's funding requests for fiscal year 2022. While SWHR supports
strong funding across all federal public health programming, we
specifically urge appropriators to support at least $46.1 billion for
the National Institutes of Health (NIH), including at least $1.7
billion for the Eunice Kennedy Shriver National Institute of Child
Health and Human Development (NICHD), and $55.4 million for the Office
of Research on Women's Health (ORWH).
Biological differences between women and men influence disease
development, progression, and response to treatment, while social
determinants of health, including gender, affect disease risk, health
care access, and outcomes.
Over the past 15 months, as the world has collectively faced the
myriad consequences of the COVID-19 pandemic, we have also seen an
array of health disparities exposed, including significant sex and
gender differences. For example, men are more likely to develop severe
complications 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 vaccination.
Additionally, women have been disproportionately affected by layoffs
and socioeconomic challenges, food insecurity, domestic violence, and
mental health concerns related to COVID-19.
Nevertheless, much of the ongoing COVID-19 research fails to
thoroughly investigate the impact of sex and gender. We have long known
that robust funding for federal institutes and offices that prioritize
women's health research is critical to achieve health equity for women.
Therefore, SWHR urges Congress to prioritize women's health and women's
health research in FY 2022 funding legislation, which includes
supporting the NIH, ORWH, and NICHD.
the national institutes of health
The NIH is America's premier medical research agency and the
largest source of funding for biomedical and behavioral research in the
world. As such, its public health mission is vital to promote the
overall health and well-being of Americans by fostering creative
discoveries and innovative research, training and supporting
researchers to ensure continued scientific progress, and expanding the
scientific and medical knowledge base.
Within the NIH, there are several initiatives aimed at improving
the health of women. Among these initiatives was the agency's Trans-NIH
Strategic Plan for Women's Health Research, released in April 2019. The
Strategic Plan laid out broad NIH goals that complement its more
targeted women's health programs. These initiatives--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--make continued support of NIH necessary in our mission to
support women's health.
SWHR urges Congress to provide at least $46.1 billion for the NIH,
a $3.2 billion increase over current funding, in FY 2022. This funding
level would sustain and bolster NIH's ability to award competitive
research grants, support the work of researchers within NIH, and build
upon efforts to mitigate the COVID-19 pandemic's impact on ongoing and
future research. We also encourage the Committee to work with NIH to
ensure that the agency studies the impact of COVID-19, including the
race and gender breakdown of participation in the workforce in the wake
of the pandemic and how sex as a biological variable impacts short- and
long-term health outcomes due to infection with SARS-CoV-2.
the office of research on women's health
For decades, and as late as the 1990s, women were treated as small
men in research. 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. Unfortunately, this approach ignored the impact of sex and
gender on human development, disease progression, and ultimately, on
approaches to research as a whole.
As the NIH focal point 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 to
programs, such as the Specialized Centers of Research Excellence, 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.
In order to allow the Office to continue to coordinate and drive
the conversation on women's health across NIH, SWHR recommends $55.4
million in funding for ORWH, an increase on par with the overall NIH
budgetary recommendations, for FY 2022. SWHR also recommends an
additional $3 million be allocated to the Building Interdisciplinary
Research Careers in Women's Health program, an initiative that trains
investigators to research sex and gender influences on health. This
program has the potential not only to improve women's health by
advancing our understanding of sex and gender differences, but also to
support a diverse research workforce.
eunice kennedy shriver national institute of child health and human
development
The NICHD provides a home for women's health research in areas
including reproductive sciences and maternal health. While the
Institute is conducting several areas of critical research, there are
two key areas of need within NICHD that could be further supported
through additional funding in FY 2022:
Pregnant and Lactating Individuals: Nearly 94% of women take at
least one medicine during pregnancy, and 50% take at least one
medication during the postpartum period. Yet, pregnant and lactating
individuals are excluded from the majority of 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.
SWHR supports the appropriate inclusion of these populations in
clinical research. The federal Task Force on Research Specific to
Pregnant Women and Lactating Women, housed within the NICHD, has been
crucial to outlining next steps for improving research in pregnant and
lactating populations. Based on the Task Force recommendations from
August 2020, SWHR requests that Congress include report language
recommending that NICHD contract with the National Academy of Medicine
to convene a panel with specific legal, ethical, regulatory, and policy
experts to develop a framework for addressing legal and liability
issues in research specific to pregnant and lactating people.
Uterine Fibroids: There is also need for improved attention to
uterine fibroids, one of the most common gynecological conditions
nationwide. Approximately 26 million individuals in the United States
from ages 15 to 50 have fibroids, and 15 million experience symptoms
like severe menstrual bleeding, anemia, impaired fertility, and
pregnancy complications. Fibroids cost the health care system $5.9 to
$34.4 billion annually.
Additionally, prominent and troubling health disparities exist in
fibroids prevalence, onset, and severity. Black women are two to three
times more likely to develop fibroids than white women. Black patients
also tend to develop fibroids at earlier ages, develop more and larger
tumors, and show increased symptom severity.
Yet, despite the prevalence of fibroids, fibroid research remains
drastically underfunded compared to disease burden. In 2019, fibroid
research received about $17 million in NIH funding, putting it in the
bottom 50 of 292 funded conditions.
SWHR calls on Congress to provide at least $1.7 billion for NICHD
in FY 2022 and to urge the NICHD to prioritize funding to expand basic,
clinical, and translational research pathophysiology to identify early
diagnostic methods and fertility-preserving treatments and to
understand and mitigate the impact of health disparities.
****
The Society for Women's Health Research appreciates the opportunity
to submit this testimony and thanks the Subcommittee for considering
our requests of at least $46.1 billion for NIH, $55.4 million for ORWH,
and at least $1.7 billion for NICHD. We look forward to working with
you to support medical and health services research and, therein, the
health of the nation. If you have questions or would like more
information, please do not hesitate to contact me at [email protected].
[This statement was submitted by Kathryn G. Schubert, President &
CEO,
Society for Women's Health Research.]
______
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 regarding our report
language recommendations for prioritizing research activities on
gynecologic cancers at the NIH National Cancer Institute in Fiscal Year
2022. 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 in the United States and abroad represent the entire
gynecologic 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 support research aimed to improve outcomes for diverse
patient populations.
Gynecologic cancers are cancers that start in a patient's
reproductive organs. There are five types of gynecologic cancers:
cervical cancer, ovarian cancer, uterine also referred to as
endometrial cancer, vaginal cancer, and vulvar cancer. Cervical,
ovarian, and uterine cancers have both the highest incidence and
mortality rates of all the gynecologic cancers.
The American Cancer Society estimates that this year in the United
States over 100,000 people will be diagnosed with gynecologic cancers,
including 66,570 new cases of uterine cancer, 21,410 cases of ovarian
cancer, and 14,480 new cases of cervical cancer. More than 30,000
people will die from these malignancies, including 12,940 deaths from
uterine cancer, 13,770 deaths from ovarian cancer, and 4,290 deaths
from cervical cancer.
What is most alarming is the American Cancer Society's Annual
Report to the Nation on the Status of Cancer, 1975-2014, which compared
overall cancer survival rates from 1975-1977 and from 2006-2012 and
reported that survival rates increased significantly for all but two
cancer types in women, cancer of the cervix and of the uterus.
Furthermore, there are significant health disparities among
patients who are diagnosed with these cancers. Despite overall declines
in cervical cancer mortality in the U.S. over the past 6 decades,
racial and socioeconomic disparities continue to exist in cervical
cancer screening, incidence, and mortality, resulting in a
disproportionate impact on low-income patients and patients of color.
Hispanic patients are most likely to get cervical cancer, followed by
African Americans, American Indians and Alaskan natives, and Whites.
Hispanic patients are sixty percent (60%) more likely to be diagnosed
with and thirty percent (30%) more likely to die from cervical cancer
than white patients. Black patients are approximately twice as likely
to die of cervical cancer. Socioeconomic status plays a role in these
disparities. Patients living below the poverty level and without a high
school education are 4.9 and 6.3 times more likely to die of cervical
cancer than patients with the highest income and education levels,
respectively. As concerning as these figures remain, they may in fact
represent an underestimation of the problem especially in black
patients. A patient that is diagnosed with invasive cervical cancer
often reflects a patient who did not have access to or failed to
receive a Pap smear test.
Uterine or endometrial cancer is the most common gynecological
cancer, and the fourth most common malignancy among women in the United
States. There are significant racial disparities in endometrial cancer
as well. Endometrial cancer has been reported to be thirty-one percent
(31%) lower among black patients compared to white patients. However,
both black and Hispanic patients are less likely to receive evidenced
based care. These racial disparities in treatment likely contribute to
racial disparities in outcome. The age-adjusted mortality among black
patients is approximately 84% higher.
Disparities in access to genetic testing, preventive services, and
other aspects of providing care for patients with gynecologic cancers
are creating enormous inequities in outcomes and survivorship in our
health care system, particularly for endometrial cancer and cervical
cancer. Research is needed to help understand barriers to screening
programs, discover new approaches to screening, and promote wider
implementation of known strategies to facilitate optimal treatments and
improved mortality for minority populations with these diseases.
The SGO urges the Subcommittee to adopt the following report
language focused on gynecologic cancers in the report accompanying the
Fiscal Year 2022 Labor-HHS-Education appropriations bill.
National Institutes of Health
National Cancer Institute
Gynecologic Cancers.--The Committee continues to be concerned about
the growing racial, socioeconomic, and geographic disparities in
gynecologic cancers. In contrast to most other common cancers in the
United States, relative survival for women with newly diagnosed
advanced cervical or endometrial cancer has not significantly improved
since the 1970s.\1\ Furthermore, historical data demonstrates that
Black and Latinx women with gynecologic cancers are not as likely to
receive standard therapy and/or die more frequently.\2\ The current
COVID-19 pandemic has only exacerbated the health care disparities that
were already present in minority and underrepresented communities. For
example, in early 2021 the Centers for Disease Control (CDC) published
findings that cervix cancer screenings in California decreased by as
much as 78% during the pandemic--and have not recovered. They
specifically noted concern because ``cervical cancer incidence and
mortality rates are disproportionately higher in Hispanic women and
non-Hispanic Black women.'' \3\ Therefore, the Committee urges the NCI
to expand the number of program projects, clinical trials, research
grants, and contract opportunities for investigators that focus on
discoveries that will positively impact access to prevention, early
detection, diagnosis, and treatment for gynecologic cancers and address
these now well documented disparities. Accelerated progress in reducing
gynecologic cancer mortality has been a need for some time. The
Committee requests an update on NCI's research program for gynecologic
cancers in the fiscal year 2023 Congressional Budget Justification,
including specific grants and strategies where the intent is to
overcome these racial disparities in gynecologic cancers outcomes,
including the underrepresentation of minority women in gynecologic
cancer clinical trials.
---------------------------------------------------------------------------
\1\ Jemal A, et al. Annual report to the nation on the status of
cancer, 1975-2014, featuring survival. J Natl Cancer Inst 2017; 109(9):
djx030.
\2\ Rauh-Hain JA, et al. Racial and ethnic disparities over time in
the treatment and mortality of women with gynecological malignancies.
Gynecol Oncol 2018; 149(1): 4-11.
\3\ Miller MJ, et al. Impact of COVID-19 on cervical cancer
screening rates among women aged 21-65 years in a large integrated
health care system. CDC Morbidity and Mortality Weekly Report. January
29, 2021; 70(4): 109-113.
---------------------------------------------------------------------------
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
prevention, diagnosis, treatment, and survivorship of gynecologic
cancers, benefitting minority patients and all patients who are
impacted by these diseases.
______
Prepared Statement of the Society of Nuclear Medicine and
Molecular Imaging
Madam Chair 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 the President's request of $52 billion for the
National Institutes of Health and ask that no less than $46.111 billion
of that be for the NIH's base program budget for FY2022.
Moreover, SNMMI supports a proportional increase to the National
Institute of Biomedical Imaging and Bioengineering (NIBIB), resulting
in at least $441.1 million for FY2022--a $30.4 million increase over
FY2021. These base increases reflect approximately 5% above the
biomedical research and development price index (BRDPI). 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.
---------------------------------------------------------------------------
\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.
---------------------------------------------------------------------------
Radiopharmaceutical Imaging and Therapy for Cancer
In the last month alone, two major advancements in the fight
against prostate cancer were in the news. Pylarify, a radioactive
imaging agent, was approved by FDA on May 27. This radiotracer seeks
out prostate cancer cells throughout the body so the active foci of
cancer can 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.
One week later, the results from the VISION trial were announced. This
phase III trial enrolled men with late-stage castrate-resistant
prostate cancer that had spread and were treated with either a PSMA
targeting molecule with the radioisotope lutetium-177 (\177\Lu)
attached, or with the best standard of care. The PSMA part of the drug
acts like GPS 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 will accelerate
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\
---------------------------------------------------------------------------
\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.
---------------------------------------------------------------------------
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.
---------------------------------------------------------------------------
\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.
---------------------------------------------------------------------------
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.
---------------------------------------------------------------------------
\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.
---------------------------------------------------------------------------
Imaging of the brain in Alzheimer Disease
In the past weeks, 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 US
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 US 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.
---------------------------------------------------------------------------
\5\ https://www.whatisbiotechnology.org/index.php/timeline/science/
immunotherapy/80.
---------------------------------------------------------------------------
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 $46.111
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 Student Support and
Academic Enrichment Program
Dear Chairwoman Murray, Ranking Member Blunt, Chairwoman DeLauro,
and Ranking Member Cole:
As you consider Fiscal Year 2022 appropriations for the U.S.
Departments of Labor, Health and Human Services, and Education, we
encourage you to help close opportunity and resource gaps in our
nation's public schools by funding the Student Support and Academic
Enrichment (SSAE) grant program authorized by Title IV-A of the Every
Student Succeeds Act (ESSA) at $2 billion, which represents a $780
million increase over FY2021.
Title IV-A is a flexible grant that supports state and district
efforts to: (1) support safe and healthy students by providing
comprehensive mental and behavioral health services, implementing
violence prevention programs, trauma informed care, school safety
trainings; and other evidenced based initiatives; (2) increase student
access to a well-rounded education, such as: STEM; computer science and
accelerated learning courses; career and technical education; physical
education; music; the arts; foreign languages; college and career
counseling; effective school library programs; and social and emotional
learning; and (3) provide students with access to technology and
digital learning materials and educators with professional development
and coaching opportunities necessary to effectively use those
resources.
Over the last four fiscal years, on a bipartisan basis, Congress
has provided a $4 billion investment for Title IV-A, which has allowed
districts to meaningfully invest in programs that provide direct
educational services and equitable supports to students. Its
flexibility has allowed districts to provide funding for critical
programs that support educators, school leaders, and students. As
district leaders continue to leverage the flexibility of the SSAE
grants, they are eager to plan for the continuance and/or expansion of
existing programs and services, and to create new programs.
To address unprecedented interruptions to learning caused by COVID-
19, we call on Congress now to go beyond what was authorized in ESSA by
providing $2 billion for the SSAE block grant. This will allow
additional school districts, especially in rural areas, to make
investments in not just one, but all three areas that this grant
supports. Right now--more than ever--districts need the continued
investments in the Title IV-A program.
The continued funding in these critical areas, especially during
these uncertain times, will give districts the opportunity to build on
the successes from the past 5 fiscal years as well as the ability to
use Title IV-A funds to address issues that the COVID-19 crisis has
made apparent and exacerbated. This pandemic has made clear that
districts face a wide range of unique challenges, whether it's ensuring
all children have access to technology for remote or blended learning
or the ability to provide mental health supports from afar. As school
systems prepare for the return to the classroom, they will need the
flexibility of Title IV-A funds to provide social and emotional
learning programs, engaging well-rounded classes like music and
physical education, and active learning opportunities enabled through
technology.
In order to support a safe and healthy school environment and make
sure our students receive a well-rounded education that puts them on a
path to success, we must continue to invest in our nation's schools,
educators, and most importantly, our students. For these reasons, we
urge Congress to fund the SSAE flexible grant program at $2 billion in
FY 2022.
Thank you for the consideration of this request, we are grateful
for the continued investments in the Student Support and Academic
Enrichment grant program under Title IV-A of the Every Student Success
Act (ESSA).
Sincerely.
______
Prepared Statement of Susan G. Komen Breast Cancer Foundation
Susan G. Komen (Komen) is the world's leading nonprofit breast
cancer organization representing the millions of Americans who have
been diagnosed with breast cancer and are currently living in the
United States. Komen has an unmatched, comprehensive 360-degree
approach to fighting this disease across all fronts--we advocate for
patients, drive research breakthroughs, improve access to high-quality
care, offer direct patient support and empower people with trustworthy
information. Komen is committed to supporting those affected by breast
cancer today, while tirelessly searching for tomorrow's cures. We
advocate on behalf of the estimated 284,200 women and men in the United
States that will be diagnosed with breast cancer and the more than
44,000 that will die from the disease in 2021 alone.
Screening tests are used to find breast cancer before it causes any
warning signs or symptoms. Regular screening enables us to detect
potential cancers at earlier stages and refer patients to further care,
often yielding better outcomes for patients and resulting in decreased
financial pressure on our healthcare system. Without access to early
detection programs, many individuals are forced to delay or forgo
screenings, which can lead to disease progression and later-stage
breast cancer diagnoses. To ensure access to early detection programs,
Komen is requesting that Congress fully fund the Centers for Disease
Control's (CDC) National Breast and Cervical Cancer Early Detection
Program (NBCCEDP) at the authorized amount of $275 million in Fiscal
Year (FY) 2022.
NBCCEDP was established with the passage of the Breast and Cervical
Cancer Mortality Prevention Act in 1990. The program plays a critical
role in helping low-income, uninsured, and underinsured women who do
not qualify for Medicaid receive timely breast and cervical cancer
screening, diagnostic and treatment services that are free or low-cost.
The covered services include clinical breast examinations, mammograms,
pelvic examinations, Pap tests, human papillomavirus (HPV) tests,
diagnostic tests if screening results are abnormal, and referrals to
treatment. Additionally, the NBCCEDP provides patient navigation
services to help women overcome barriers and get timely access to
quality care.
For 30 years, NBCCEDP has provided lifesaving breast cancer
screening and diagnostic services to eligible women in all 50 states,
the District of Columbia, six territories and 13 American Indian/Alaska
Native tribes or tribal organizations. NBCCEDP has served more than 5.8
million women since it launched in 1991, detecting over 72,000 breast
cancers, nearly 23,000 premalignant breast lesions, 4,900 cervical
cancers and 226,000 premalignant cervical lesions. More statistics on
the number of women served by the program in each state is available
here.
The program, which is a partnership between the CDC and state
health departments, also provides public education, outreach, care
coordination and quality assurance to increase breast cancer screening
rates and reach underserved, vulnerable populations. Each state program
operates within the national framework of legislation, policy, and
oversight; however, programs vary in funding, infrastructure,
populations served and geographical barriers. Programs can prioritize
the population they serve based on their cancer burden, environment,
available resources and goals. Unfortunately, these are often
influenced and limited by state funding and state legislative
constraints.
The COVID-19 pandemic highlighted the broad systemic trend that
exists with almost every public health crisis: consequences are more
commonly and more severely experienced in low-income, minority and
rural communities. Black women in the United States have a breast
cancer mortality rate about 40 percent higher than white women.
Similarly, Hispanic/Latina and American Indian/Alaska Native women are
30 percent more likely to be diagnosed with advanced stage breast
cancer compared with white women. NBCCEDP funding supports
interventions which help address inequities in breast cancer screening
and diagnosis since the program places special emphasis on women who
are geographically or culturally isolated and who identify as racial or
ethnic minorities. The program focuses on factors at the interpersonal,
organizational, community and policy levels that influence screening.
NBCCEDP invests in evidence-based interventions, for health care
systems and communities, which reflect cultural competencies needed to
reach communities that often distrust the medical system. Use of
multicomponent interventions of this type are found to be more
effective at connecting historically marginalized communities to
services. However, the CDC and state health departments need more
support.
More than 2.6 million women are eligible for NBCCEDP breast cancer
screening services. Authorized at $275 million, the program is
currently funded at approximately $197 million. Unfortunately, at
current funding levels NBCCEDP serves fewer than 15 percent of the
estimated number of eligible women for breast cancer screening services
and less than seven percent of eligible women for cervical cancer
screening.
An increase in funding in FY22 will be especially crucial as the
nation recovers from the COVID-19 pandemic. Data show that the pandemic
has caused people to delay life-saving breast cancer screenings.
Models, based on data from the 3-month period from early March 2020
through early June 2020, suggest there could be as many as 36,000
missed or delayed diagnoses of breast cancer because of COVID-19.\1\
This delay can mean women will not seek care until the cancer is more
advanced, leading to worse outcomes for the patient and much more
costly treatment. Furthermore, with many Americans experiencing job
loss and financial difficulties related to the COVID-19 pandemic, with
resulting loss of healthcare benefits, continued access to NBCCEDP is
needed now more than ever.
---------------------------------------------------------------------------
\1\ IQVIA Institute for Human Data Science, Shifts in Healthcare
Demand, Delivery and Care During the COVID-19 Era (April 2020).
---------------------------------------------------------------------------
The availability of the NBCCEDP impacts every taxpayer and people
in every congressional district, as the uninsured will eventually seek
care at our states' hospitals with late-stage disease, putting an even
greater strain on the patients, the health system and state budgets.
Ensuring adequate NBCCEDP funding is key to ensuring that low-income,
uninsured, and underinsured women across the country continue to have
access to vital screening services, health education and patient
navigation services, as well as enabling proper monitoring of state and
local breast cancer patterns and trends.
An increased investment in the NBCCEDP will allow the CDC and its
state and local partners to broaden its reach and pursue important
goals such as implementing innovative strategies and new methods to
find eligible women currently not using the program, including those
with no source of care, and lower incomes, education, and health
literacy levels, ultimately helping to create a more equitable health
care system.
The NBCCEDP has bipartisan support in both the Senate and House of
Representatives, with letters being submitted in both chambers in
support for full authorized funding for the program this year.
Increasing funding for NBCCEDP to the authorized level of $275 million
in the FY 22 Labor, HHS, Education Appropriations Bill will result in
more women being screened, more cancers being diagnosed at earlier
stages and ultimately better outcomes for women and lower costs for our
health care system.
[This statement was submitted by Molly Guthrie, Sr., Director,
Public Policy and Advocacy.]
______
Prepared Statement of the Task Force for Global Health
Thank you for this opportunity to provide testimony on polio
activities at The Task Force for Global Health. I write to express our
support for full funding for CDC's polio initiatives.
The Task Force for Global Health, founded nearly 40 years ago to
advance health equity, works with partners in more than 150 countries
to eliminate diseases, ensure access to vaccines and essential
medicines, and strengthen health systems to protect populations. Our
expertise includes polio, influenza, COVID-19, hepatitis, neglected
tropical diseases; vaccine safety, distribution and access; and health
systems strengthening. Our COVID-19 activities include working with 50
countries to deliver vaccines, address vaccine hesitancy, provide
vaccine safety guidelines; advise on digital contact tracing; train
epidemiologists in disease surveillance and response; distribute
essential protection and treatment to hard-hit communities; work
through existing health programs to ensure protection for vulnerable
groups, such as those afflicted with other diseases; and leverage our
existing supply chains to support ongoing response and assist countries
in delivering vaccines.
CDC has been engaged in the fight against polio for over 31 years.
Its leadership, in providing technical guidance and expertise in
countries, regionally and globally as part of the Global Polio
Eradication Initiative, has resulted in a reduction in the number of
worldwide polio cases from an estimated 350,000 in 1988 to 176 in
2019--a decline of more than 99% in reported cases. It has also
resulted in polio-free certification in five of the six regions of the
world--the African Region, the Americas, Europe, South East Asia and
the Western Pacific. Only two polio-endemic countries (nations that
have never interrupted the transmission of wild poliovirus) remain--
fghanistan and Pakistan. Without CDC's polio eradication efforts, more
than 18 million people who are currently healthy would have been
paralyzed by the virus.
At the Task Force for Global Health, we are providing surge
capacity expertise and technical assistance to outbreak countries and
those at high risk of future outbreak in the African region. Since
April 2018, the Global Polio Surge Capacity Team, consisting of a
project manager and four senior epidemiologists, have deployed a total
of 17 times to Ghana, Ethiopia, Indonesia, Congo-Brazzaville, and
Zambia, with a total of nearly 1,250 person days. In a time of growing
scale and scope of circulating type 2 vaccine-derived poliovirus
(cVDPV2) outbreaks, the team provides highly respected and valued
expertise across the Global Polio Eradication Initiative (GPEI)
partnership.
In Ministry of Health forums, the team is considered a crucial
component of polio outbreak response efforts, often working closely
with Emergency Operations Centers and national public health institute
staff. They have provided technical assistance for improving active
case search, enhancing surveillance efforts, and preparation and
implementation of vaccination campaigns. Supplementary immunization
activities have targeted hundreds of millions of children since the
team was created, and the long-term nature of their deployments has
provided essential continuity in settings that often see high staff
turnover.
Since CDC began the Frontline Polio Surge activities in October
2019, the team has provided supervision and direction to the deployed
staff, connecting them with district surveillance staff, WHO
colleagues, and Ministry of Health staff. They serve as in-country
experts and resources to teams deployed at district levels for
campaigns and surveillance strengthening activities. A training program
to prepare 100 NSTOP (National Stop Transmission of Polio) staff for
field deployments was developed and conducted.
In Ethiopia and Zambia, members of the team have taken the lead on
supporting the Ministries of Health in developing comprehensive
surveillance proposals for continued active case search of Acute
Flaccid Paralysis (AFP) cases, with SOPs and protocols for district
surveillance staff. These include the utilization of Field Epidemiology
Training Program (FETP) residents as sources of valuable local human
resource capacity. The institutionalization of this expertise is
crucial for these countries working towards controlling outbreaks and
ultimately eradicating polio.
Moving forward, we will continue to provide in-person technical
assistance to countries facing circulating vaccine-derived type 2
poliovirus outbreaks, to meet surveillance and response needs. This
work will include pre-, intra-, and post-vaccination campaign
activities. Additionally, the team will apply its extensive breadth of
experience in using data for action to strengthen surveillance
networks, country outbreak preparedness and response plans, and
training materials.
Lastly, we will provide remote technical assistance as needed on
campaign data quality, monitoring and evaluation of campaigns,
strengthening of EOCs, and supervision of local consultants. Members of
the team will continue to provide guidance on various long-term
requests from Ministries of Health and international agencies.
Due to Congress's support in FY 2019 and FY 2020, select CDC polio
accomplishments include:
--Provide instrumental support internationally and domestically
through extensive details to the CDC COVID-19 response and
through polio-supported staff to the COVID-19 pandemic response
in Afghanistan, Pakistan, and across Africa in the areas of
disease surveillance, health worker training, contact tracing,
risk communications and testing.
--Provide $56.13 million in FY 2020 to UNICEF for the expansion of
Community Based Vaccinator Program in Pakistan that now
includes over 24,000 workers (nearly 90% are women) who reach 4
million children annually, approximately 60 million doses of
oral polio vaccine, 2.9 million doses of inactivated polio
vaccine, and $3 million for operational costs for NIDs in all
polio-endemic countries and outbreak countries. Most of these
NIDs would not take place without the assurance of CDC's
support.
--Provide expertise in virology, diagnostics, and laboratory
procedures, including quality assurance, and genomic sequencing
of samples obtained worldwide; provide 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.
CDC has the leading specialized polio reference lab in the
world.
--Deploy 210 Stop Transmission of Polio (STOP) members in 42
countries with two-thirds deployed to the African Region which
has significantly benefited from STOP support, contributing
substantially to the region's achievement of wild polio-free
status in 2020. CDC's Stop Transmission of Polio (STOP) program
trained and deployed 2100 public health professionals to
improve vaccine-preventable disease surveillance and to help
plan, implement, and evaluate vaccination campaigns.
--Use STOP participants to support local governments, health
facilities, and communities during the COVID-19 pandemic to
promote awareness of COVID-19 and provide contract tracing
while still supporting VPD surveillance, essential immunization
services, and polio eradication efforts.
Global polio initiatives are leading us to a day when polio will be
eradicated from our planet. The Task Force for Global Health is honored
to support CDC's leadership in its mission and to serve as part of this
strong global partnership to end polio in our lifetime.
With Congress' continued support, we will be able to support CDC's
outbreak priorities, which include strengthening surveillance for
polioviruses in all areas currently below certification standard and
rapidly responding to the detection in a population of the types of
polioviruses included in discontinued oral polio vaccines. We will also
ensure that populations are not exposed to the types of polioviruses
included in discontinued oral polio vaccines while laying the logistic
and epidemiologic groundwork for the complete cessation of use of all
oral polio vaccines.
Thank you for the opportunity to provide this testimony.
[This statement was submitted by Dr. Fabien Diomande, Director,
Polio Surge Program: Task Force for Global Health.]
______
Prepared Statement of the Task Force for Global Health
Thank you for allowing me to provide written remarks on behalf of
the Coalition for Global Hepatitis Elimination of the Task Force for
Global Health. I want to express the Coalition's strong support for
funding of at least $250 million for the Department of Health and Human
Services' national strategy for the elimination of viral hepatitis and
the global and domestic activities needed to achieve the plan's goals
for hepatitis elimination.
As the COVID-19 pandemic has taught us, we must eliminate deadly
viral threats when we have the opportunity. Now is the time to
eliminate hepatitis B virus (HBV) and hepatitis C virus (HCV).
The Task Force for Global Health, founded in 1984 to advance health
equity, works with partners in more than 150 countries to eliminate
diseases, ensure access to vaccines and essential medicines, and
strengthen health systems to protect populations. Our expertise
includes neglected tropical diseases and other infectious diseases;
vaccine safety, distribution and access; and health systems
strengthening.
The Coalition for Global Hepatitis Elimination, a program of the
Task Force for Global Health, with support of CDC and NIH, assists the
work of public health authorities, clinicians and community
organizations working on the front lines to prevent, detect and treat
HBV and HCV.
hbv and hcv infections are large global health problems
In 2015, a total of 296 million and 58 million persons worldwide
were living with HBV and HCV infections, respectively, which cause over
1 million deaths per year. In the United States, as many as 2.3 million
persons are living with HBV infection and 3.5 million persons are
living with HCV infection. The United States has the third largest
burden of HCV in the world, after only China and India. Of HBV and HCV
infected persons, if undiagnosed and untreated, 20%-25% will die of
liver disease or liver cancer. Three of four liver cancer deaths are
caused by HBV or HCV.
Hepatitis is a health disparity for racial/ethnic minority
populations and for rural America. The health threat of hepatitis B is
greatest for Asian Americans who were not vaccinated as children before
arriving in the United States. Hepatitis-infected persons in
communities of color have limited access to testing and lifesaving
treatment, leading to higher death rates for American-Indians/Alaskan
Natives and Black Americans. New infections of HCV are rising at an
alarmingly fast pace, fueled by the opioid crisis and increases in
injection drug use with unsafe equipment. HCV infections rates are
increasing the most among young adults in Appalachian states.
All of the public health and biomedical tools needed to address
these gaps in hepatitis prevention, testing, and treatment are
available. HBV vaccines have been in use for decades. Indeed, the 2020
Nobel Prize in Medicine was awarded to two American scientists for work
leading to the discovery of HCV and making possible the reliable tests
and first curative therapies for a chronic viral infection. Rarely in
public health do we have this opportunity. Now is the time to act
within our borders and globally to eliminate viral hepatitis.
Support for the Viral Hepatitis National Strategic Plan for the United
States: A Roadmap to Elimination 2021-2025
In January 2021, the Department of Health and Human Services
released the Viral Hepatitis National Strategic Plan for the United
States: A Roadmap to Elimination 2021-2025. The Plan is the first to
join with the global goals adopted by other nations and to aim for
elimination of viral hepatitis as a public health threat in the US.
With the support of this Committee and of Congress, the nation can act
on this first national elimination plan and strengthen efforts to stop
hepatitis in its tracks and ensure all people benefit from disease
elimination.
The Coalition activities supported by federal agencies, including
CDC and NIH, assist the implementation of the HHS strategic plan and
achievement of goals for hepatitis elimination. With federal partners,
the Coalition is focused on 4 key objectives for advancing hepatitis
elimination. The US must advance these priorities at home to ensure the
success of the national strategic plan and also provide global
leadership in addressing this public health threat.
Priority 1. Assure all newborns receive Hepatitis B vaccination and
are protected from HBV infection and liver cancer. A birth dose of
hepatitis B vaccine followed by two doses of infant immunizations
decreases risk of mother-to-child HBV transmission by 90%. However,
less than 50% of children globally receive hepatitis B vaccine within
24 hours, a critical intervention interrupting mother-to-child
transmission. Coverage is lowest (10%) in Africa where the prevalence
of HBV is the highest in the world. In collaboration with CDC, the
Coalition is training public health officials and assisting countries
to develop improved vaccination policies. Over 200 Ministry of Health
officials, research partners, and civil society members are
participating in training sessions to support more governments in
adopting hepatitis B newborn vaccine policies and improving coverage.
Through these efforts, the Coalition limits continued introduction of
HBV into the US and reduces HBV as a health disparity for Asian and
African-born Americans.
Priority 2. Implement simple models of care to detect and treat
persons living with HBV and HCV. The therapies for HBV and HCV are low
cost and safe. Therapies for HCV cure 95% of persons who receive
treatment. Most persons globally remain undiagnosed and untreated.
Proven models of care by non-specialists increase access to lifesaving
testing and treatment. in the US and globally. The Coalition assists
health systems simplify care and eliminate HBV and HCV as major causes
of death.
Priority 3. Develop tools for tracking progress in elimination.
Over the course of the next year, the Coalition will develop national
hepatitis elimination profiles for the United States and other high-
burden countries bringing together the latest data regarding hepatitis
burden and status of policy development with trends in access to
vaccination, testing and treatment. These profiles will help countries
identify gaps in hepatitis services and assist US Government agencies
to prioritize support.
Priority 4. Create additional opportunities to disseminate lessons
on effective hepatitis prevention care and treatment. Despite effective
tools and model programs, many countries like the United States are
facing a rise in new cases or low screening rates. Programs in the
United States and across the world benefit from sharing lessons
learned, saving time and avoiding redundant research. Over the past
year, the Coalition has reached over 1,000 individuals in 64 countries
through over 20 stakeholder meetings and web-based educational and
training sessions. These events are opportunities for programs to share
experiences and resources. The Coalition is collaborating with NIH to
publically share NIH-funded research advancing hepatitis elimination
and identify further research priorities.
Thank you again for this opportunity to support full funding of the
HHS roadmap for hepatitis elimination. The Coalition looks forward to
continued collaborations with HHS on the domestic and global activities
needed to eliminate viral hepatitis in the United States and globally.
[This statement was submitted by William P. Nichols, Executive Vice
President and Chief Operating Officer, Task Force for Global Health.]
______
Prepared Statement of the Task Force for Global Health, Inc.
Thank you for this opportunity to provide testimony on influenza
activities at The Task Force for Global Health. I write to express our
support for full funding for CDC's influenza initiatives.
The Task Force for Global Health, founded nearly 40 years ago to
advance health equity, works with partners in more than 150 countries
to eliminate diseases, ensure access to vaccines and essential
medicines, and strengthen health systems to protect populations. Our
expertise includes polio, influenza, COVID-19, hepatitis, neglected
tropical diseases; vaccine safety, distribution and access; and health
systems strengthening. Our COVID-19 activities include work with 53
countries to deliver vaccines, address vaccine hesitancy, provide
vaccine safety guidelines; advise on digital contact tracing; train
epidemiologists in disease surveillance and response; distribute
essential protection and treatment to hard-hit communities; work
through existing health programs to ensure protection for vulnerable
groups, such as those afflicted with other diseases; and leverage our
existing supply chains to support ongoing response and assist countries
in delivering vaccines. The Task Force's influenza program has provided
the framework for our work in COVID-19.
In 2013 with funding from CDC, the Task Force for Global Health
established the Partnership for Influenza Vaccine Introduction (PIVI)
to create sustainable, seasonal influenza vaccination programs in low-
and middle-income countries. The initiative protects communities from
the annual impact of flu, and also builds the adult immunization
infrastructure, capacity, and vaccine delivery systems critical for
future influenza pandemics and other infectious disease epidemics.
During the 2009 influenza pandemic, countries with seasonal
influenza vaccination programs were able to import, and use vaccines
much faster than countries without such programs.\1\ With financial and
technical support from CDC, PIVI supports countries in building legal,
programmatic, policy-making, and regulatory capacity to quickly import
and deploy influenza vaccines. The public-private collaboration
provides influenza vaccines allowing countries to annually exercise and
evaluate program effectiveness while moving towards country ownership
and sustainability. In support of this objective, PIVI funds and
fosters creation of regional collaborations that establish multi-
country region-level working groups to share data, programmatic
experience and explore opportunities for joint vaccine procurement
efforts.
---------------------------------------------------------------------------
\1\ Porter, R. M. et al. (2020) 'Does having a seasonal influenza
program facilitate pandemic preparedness? An analysis of vaccine
deployment during the 2009 pandemic', Vaccine. Elsevier, 38(5), pp.
1152-1159.
---------------------------------------------------------------------------
The influenza program infrastructure has supported, and continues
to support, the efforts to fight COVID-19. From disease risk education
and prevention, surveillance, the collection and analysis of laboratory
specimens, and the sharing of information and genetic sequence data--
the global and national influenza infrastructure is an indispensable
component of the public health response to COVID-19. The same influenza
vaccine delivery systems that enabled timely and efficient use of
seasonal influenza vaccine are, and will be, utilized to deploy COVID-
19 vaccine(s) as they become available. PIVI is at the forefront of
this work.
In 2020, building on the expertise, the experience, and the lessons
learned from the program, the Task Force quickly developed a new
program called CoVIP, a public-private partnership between CDC and the
Task Force engaging a global collaboration of public health technical
experts, to ensure that low and middle-income countries are ready and
able to deploy and evaluate COVID-19 vaccines as they become available.
With funding from the CARES Act, the Task Force's influenza program
is currently supporting 53 countries with technical assistance and some
funding to develop national deployment plans, evaluate programmatic
approaches, and refine their vaccine program approaches.
Applying the influenza program tools to the COVID-19 vaccine
rollout provides a unique opportunity to rapidly gather information to
improve and sustain the vaccines for global use, and establish long-
lasting national capacities for future use.
Thank you for the opportunity to provide this testimony.
[This statement was submitted by Dr. Mark McKinlay, Director,
Center for
Vaccine Equity: Task Force for Global Health, Inc.]
______
Prepared Statement of the Tourette Association of America
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 2022 (FY22). The Centers for Disease
Control and Prevention (CDC) play a pivotal role in educating the
public. To that end, the Tourette Syndrome Public Health Education and
Research Program at the CDC is critically important to the TS and Tic
Disorder community. We respectfully request that you continue funding
the enacted level $2 million appropriation for the program in FY22
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 (PL. 106-
310 Title 23) and is the only such program that receives federal
funding for Tourette Syndrome (TS) public health education. With your
support at the previously enacted level of $2 million, CDC can ensure
critically necessary progress continues in the areas of public
education, research and diagnosis for TS and Tic Disorders.
The TAA is the premier national non-profit organization working to
make life better for all people affected by TS and Tic Disorders. We
have served in this capacity for 49 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% of
parents struggle to cover the high costs of services for their child
such as counseling, appointments and tutoring; 34% 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%
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% 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% 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%) 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% 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% of children felt that dealing co-occurring conditions was one of
the biggest challenges in managing TS. In addition, 32% of children and
51% 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% of children felt that TS negatively impacted their
school experience and education and 69% 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% 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 2022 for the Tourette Syndrome Public
Health Education and Research Program at CDC's National Center for
Birth Defects and Developmental Disabilities at the previously enacted
level of $2 million.
______
Prepared Statement of the Training Programs in Epidemiology and Public
Health Interventions Network
Thank you for this opportunity to provide written testimony on
behalf of the Training Programs in Epidemiology and Public Health
Interventions Network, known as TEPHINET, based at The Task Force for
Global Health.
The Task Force for Global Health, founded in 1984 to advance health
equity, works with partners in more than 150 countries to eliminate
diseases, ensure access to vaccines and essential medicines, and
strengthen health systems to protect populations. Our expertise
includes neglected tropical diseases and other infectious diseases;
vaccine safety, distribution and access; and health systems
strengthening. Our COVID-19 activities include: working with 50
countries to help vaccinate their populations, providing vaccine safety
guidelines; advising on digital contact tracing; training
epidemiologists on disease surveillance and response; distributing
essential protection and treatment to hard-hit communities; using
existing health programs to ensure protection for vulnerable groups,
such as those afflicted with other diseases; overcoming vaccine
hesitancy in the United States and leveraging our existing supply
chains for ongoing response and to help countries deliver vaccines.
As the Director of TEPHINET, one of the Task Force's 16 global
health programs, I am sharing my support for efforts to build the
global field epidemiology workforce needed to advance global health
security by detecting and responding to disease outbreaks before they
become pandemics with devastating human and economic consequences. I
would also like to share with you the incredible impact that U.S.
funding is already having on building a public health workforce of
field epidemiologists worldwide.
TEPHINET, is the global network of Field Epidemiology Training
Programs (FETPs) that is funded primarily through the Centers for
Disease Control and Prevention (CDC). You might be wondering what a
field epidemiologist does and why it is important to train more field
epidemiologists around the world. Think of it this way: when there is a
fire, we call upon trained and skilled firefighters to rush to the
scene of the fire and put it out as soon as possible. Not only are
field epidemiologists the firefighters of public health, but they set
up the fire alarm systems by developing disease surveillance systems to
catch cases early. When there is a disease outbreak, a natural
disaster, or a humanitarian crisis unfolding that threatens people's
health, field epidemiologists are deployed to the scene. Their task is
to understand how and why the health threat is occurring, who is
affected, and how to stop its spread at the source. For this reason,
field epidemiologists are known as ``Disease Detectives.'' They conduct
outbreak investigations, perform contact tracing, monitor travelers at
points of entry and attendees at mass gatherings, engage with
communities on disease prevention measures, and much more. They are
based at ministries of health, national public health institutes (like
our CDC) and are in many ways the lynchpin of the overall public health
system in a country.
TEPHINET consists of 75 Field Epidemiology Training Programs
training field epidemiologists in more than 100 countries. To date,
trainees and graduates of our member programs have investigated more
than 12,000 outbreaks or acute health events and developed more than
5,000 disease surveillance systems to improve case detection.
Worldwide, more than 19,000 FETP alumni have trained as the ``boots on
the ground'' to detect and respond to public health threats.
The need for greater public health capacity to prevent, detect, and
respond to public health threats and emerging infectious diseases is a
matter of life or death for people around the world. Such capacity
makes countries better able to sustain their own national systems,
leading to economic growth and reducing the likelihood of political or
economic instability.
Never has the need for increased field epidemiology capacity around
the globe been more apparent than now, as the world has grappled
socially and economically with COVID-19. The field epidemiologists in
our network have been working around the clock to trace contacts,
investigate and manage cases, analyze COVID-19 data, educate their
communities, and much more. Without them, the governments of most
countries, like my former home of South Africa, would not have access
to reliable data on the spread of COVID-19 in their populations. In
many countries, especially the poorest, there is simply no other
workforce in place to conduct contact tracing or case investigations.
Field Epidemiology Training Programs supported by TEPHINET fill that
gap and have been steadily expanding since their founding by the CDC
and other partners nearly 40 years ago.
FETPs have trained an estimated 19,000 ``Disease Detectives'' so
far, but the world needs more. COVID-19 and other emerging diseases are
not the only threats--FETPs fight every health threat known to us, from
well-known issues like Ebola, measles, and polio to lesser known but
deadly and debilitating diseases like Lassa fever and monkeypox. While
COVID-19 is clearly an emergent threat, there will always be a
``disease X'' that poses a grave threat to the health of Americans.
In Guinea, a resource-challenged country in West Africa, the FETP
housed within the Ministry of Health is providing critical support to
help control a recent Ebola outbreak. As of April 13, 2021, Guinea had
23 reported cases of Ebola. FETP trainees and graduates made vital
contributions to slowing the outbreak, particularly in the areas of
coordination and epidemiology surveillance. They led the development of
a surveillance system to detect Ebola cases, as well as the country's
Ebola response plan, contact tracing guides, and case definitions for
Ebola patients. FETP trainees and graduates consisted the leading
Ministry of Health workforce deployed in the field to conduct Ebola-
related surveillance. Thanks to the involvement of the FETP, the vast
majority (83%) of reports of suspected cases are being investigated.
Because of the Guinea FETP, established after the 2014-2016 Ebola
outbreak in West Africa had claimed thousands of lives, today Guinea is
seeing a dramatically different response compared to the 2014-2016
outbreak--including a significant increase in the known number of
contacts traced: 95% of contacts have been traced in the current
response.
Before coming to The Task Force, I was the director of the South
African Field Epidemiology Training Program (SAFETP), which was started
with CDC funding in partnership with the Ministry of Health and the
University of Pretoria, which conferred the Master of Public Health
degree to graduates. Over time, the program became owned by the
National Institute of Communicable Disease, but CDC Pretoria continued
to provide support in the form of a Resident Advisor, Scientific
Writer, and Statistician. There was an outbreak of diarrheal disease in
a small town in Free State province, and the FETP trainees or residents
identified the root cause to be poor maintenance at the water treatment
plant. Diarrheal disease from drinking unsafe water causes dehydration,
which is a killer of children under five. As a result of the
investigation done by the FETP residents, the town installed a new
water reticulation plant that ultimately benefited residents of the
town and improved their quality of life with fewer days of productivity
lost due to gastrointestinal illness.
Without enough ``Disease Detectives'' or boots on the ground to
detect and respond to public health emergencies, it will not be long
before another outbreak becomes a pandemic with severe human and
economic costs. There will be other outbreaks, and no single
institution has all the capacity required to be adequately prepared to
face future threats. We need to harness the resources and capacities of
a wide range of partners and stakeholders and we need political
leadership, whole-of-government and whole-of-society commitment. We
need to continue the United States' tradition of helping to build
sustainable public health systems across the world that ultimately
protect all people, including the American people.
In addition to supporting the development of Field Epidemiology
Training Programs, TEPHINET and The Task Force for Global Health have
been instrumental in developing the Global Field Epidemiology Roadmap,
a plan to advance field epidemiology training and capacity building
worldwide. As we speak, we at TEPHINET are coordinating a Strategic
Leadership Group of more than a dozen public health experts from around
the world to lead the implementation of this Roadmap, so that all
countries can develop the field epidemiology capacity needed to protect
and promote the health of their own populations and collaborate with
others to promote global health.
Thank you for your ongoing support of FETPs through the vital
funding you provide. Because of this support, more than 100 countries
now have a field epidemiology workforce that did not exist prior to the
establishment of their FETPs. However, we are still working to achieve
the International Health Regulations' target of having one trained
field epidemiologist per 200,000 population in every country. The good
news is that this goal is achievable with continued investment. A
global commitment to improving global health security by investing in
field epidemiology capacity building strengthens health systems by
training our world's ``Disease Detectives'' to respond to public health
emergencies, humanitarian crises and natural disasters, and in so
doing, saving money, saving resources, and saving lives.
[This statement was submitted by Dr. Carl Reddy, Director, Training
Programs in Epidemiology and Public Health Interventions Network.]
______
Prepared Statement of the Trauma Center Association of America
As you consider Labor Health and Human Services appropriations for
Fiscal Year FY (2022), the Trauma Center Association of America (TCAA)
asks the Committee to provide $11.5 million in funding for the Military
and Civilian Partnership for the Trauma Readiness Grant Program.
In 2016, the National Academies of Science, Engineering, and
Medicine (NASEM) released a report titled, ``A National Trauma Care
System: Integrating Military and Civilian Trauma Systems to Achieve
Zero Preventable Deaths After Injury.'' This report finds that one of
four military trauma deaths and one of five civilian trauma deaths
could be prevented if advances in trauma care reach all injured
patients. In the report, the National Academies recommended that the
United States adopt an overall aim for trauma care of ``zero
preventable deaths after injury,'' and sets forth elements of system
redesign that would provide military personnel with real-world training
and experience at civilian trauma centers. This training has the dual
benefit of maintaining military surgical battle readiness between wars
while at the same time improving civilian access to trauma care. The
report concludes that military and civilian integration is critical to
saving these lives both on the battlefield and at home, preserving the
hard-won lessons of war, and maintaining the nation's readiness and
homeland security.
Section 204, of S. 1379, the Pandemic and All-Hazards Preparedness
and Advancing Innovation Act of 2019 (PAHPAI), known as the MISSION
ZERO Act was signed into law June 24, 2019 (Public Law No: 116-22).
MISSION ZERO takes the recommendations of the NASEM report to create a
U.S. Department of Health and Human Services (HHS) grant program to
cover the administrative costs of embedding military trauma
professionals in civilian trauma centers. These partnerships will allow
military trauma care teams and providers to gain experience treating
critically injured patients and increase readiness for when these units
are deployed. Similarly, best practices from the battlefield are
brought home to further advance trauma care and provide greater
civilian access.
According to the Centers for Disease Control and Prevention trauma
is the leading cause of death for children and adults under age 44,
killing more Americans than AIDS and stroke combined.
Fully funding of MISSION ZERO will allow us to continue to save
lives, enhance trauma training for our military healthcare personnel
and help trauma centers manage and recover from mandatory furloughs of
surgeons, nurses and other staff that were a direct result of the COVID
19 pandemic.
We are grateful for your consideration of this important request.
Please do not hesitate to contact us directly if you have any questions
or need additional information regarding the MISSION ZERO Act.
______
Prepared Statement of the Treatment Action Group
Treatment Action Group (TAG) 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 2022 (FY22)
appropriations. TAG is an independent, activist and community-based
research and policy think tank fighting for better treatment,
prevention, a vaccine, and a cure for HIV, tuberculosis (TB), and
hepatitis C virus (HCV). TAG works to ensure that all people with HIV,
TB, or HCV receive lifesaving treatment, care, and information. We are
science-based treatment activists working to expand and accelerate
vital research and effective community engagement with research and
policy institutions. Together with a broad coalition of stakeholders in
the TB advocacy community, TAG requests that the Subcommittee
appropriate $225 million to CDC DTBE for FY22, in particular to expand
critical TB research activities at the TB Trials Consortium (TBTC) and
mitigate the impact of the COVID-19 pandemic on struggling TB programs
across our country.
TAG works in close partnership with TB program practitioners and
researchers across the country to advance the collective goal of
eliminating TB through comprehensive, safe, and effective TB prevention
and treatment. TB cases continue to be reported in every state in the
United States (US) every year, with 8,916 cases reported in 2019.\1\ It
is estimated that approximately 13 million people in the US are
currently living with latent TB infection, which can progress to active
and contagious disease if left untreated.\2\ TB trends in the US are
also influenced by many of the same social determinants of health that
determine other health disparities--including poverty, lack of access
to healthcare, overcrowded housing and homelessness, and other
structural factors.\3\ This leaves many of the most vulnerable and
marginalized members of our society at greater risk of being exposed to
TB and developing active disease.
---------------------------------------------------------------------------
\1\ U.S. Centers for Disease Control and Prevention. U.S. TB
Statistics. Division of TB Elimination. https://www.cdc.gov/tb/
statistics/default.htm.
\2\ Ibid.
\3\ Ibid.
---------------------------------------------------------------------------
The state and local TB programs that are on the frontlines of
preventing and treating TB are engaged in critical work, and they rely
on the support of the CDC DTBE for guidance and funding. One important
way DTBE supports state and local TB programs is through its research
initiatives, including the TBTC. Housed within DTBE, the TBTC is a
unique partnership between CDC, health departments, academic research
institutions, and trial sites throughout the US and across the
globe.\4\ TBTC's research is mandated to be programmatically relevant
to health departments, meaning that investments in this research
network are some of the most cost-effective of any federal research
program. Tax payers' investments in the work of the TBTC have supported
dozens of studies of critical import to advancing the field and
improving TB treatment and prevention for people and communities
affected by TB at home and abroad.
---------------------------------------------------------------------------
\4\ 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.
---------------------------------------------------------------------------
This research is sorely needed to advance more tolerable and
effective options for TB prevention and treatment. Current treatment
guidelines for drug-sensitive TB have been the same for almost four
decades, leaving programs and patients reliant on a regimen made up of
four drugs taken for 6-9 months requiring long periods of isolation and
management of difficult side effects necessitating intensive treatment
monitoring. However, promising results from a pivotal phase III trial,
TBTC's Study 31 demonstrated that a different combination of medicines
enables treatment for drug-sensitive TB to be shortened to just four
months without compromising any efficacy.\5\ This groundbreaking
finding has the potential to dramatically improve rates of treatment
completion, drive down TB transmission, and allow TB patients to return
to their loved ones and support themselves more quickly than ever
before.\6\ Study 31 and prior TBTC research at DTBE has had profound
global health security implications, where TB was the world's leading
cause of death to an infectious disease prior to COVID-19. Research at
CDC's TBTC has been the basis for public health treatment and
prevention guidelines developed by the World Health Organization (WHO)
that are critical for country TB programs where TB is particularly
endemic and claims 1.6 million lives a year.
---------------------------------------------------------------------------
\5\ Dorman SE, Nahid P, Kurbatova EV, Goldberg SV, Bozeman L,
Burman WJ, Chang KC, Chen M, Cotton M, Dooley KE, Engle M, Feng PJ,
Fletcher CV, Ha P, Heilig CM, Johnson JL, Lessem E, Metchock B, Miro
JM, Nhung NV, Pettit AC, Phillips PPJ, Podany AT, Purfield AE,
Robergeau K, Samaneka W, Scott NA, Sizemore E, Vernon A, Weiner M,
Swindells S, Chaisson RE; AIDS Clinical Trials Group and the
Tuberculosis Trials Consortium. High-dose rifapentine with or without
moxifloxacin for shortening treatment of pulmonary tuberculosis: Study
protocol for TBTC study 31/ACTG A5349 phase 3 clinical trial. Contemp
Clin Trials. 2020 Mar;90:105938. doi: 10.1016/j.cct.2020.105938. Epub
2020 Jan 22. PMID: 31981713; PMCID: PMC7307310. https://
pubmed.ncbi.nlm.nih.gov/31981713/.
\6\ Treatment Action Group. TAG Statement: Finally a New Four Month
Treatment for Drug Susceptible TB. 2020 October. https://
www.treatmentactiongroup.org/statement/finally-a-new-four-month-
treatment-for-drug-susceptible-tb/.
---------------------------------------------------------------------------
While these results are certainly cause for celebration, much work
remains to be done to translate these findings into real public health
impact and ensure the availability of shorter treatment regimens to all
TB patients and programs. Many other areas of research are also still
on the horizon, including better TB prevention options and tools for
children and pregnant people. Some of this research is already underway
through other TBTC studies.\7\ The recent process by TBTC to solicit
research proposals (i.e. TBTC re-competition) sets up this heralded
research network for the next 10 years of programmatically-relevant
research that could include many of these pressing priorities for TB
R&D. But this progress is marred by decades of insufficient federal
funding for DTBE, which limits the ambition and scientific integrity of
how TBTC can approach its research agenda. In turn, the historical lack
of funding to DTBE limits the possibilities of implementation of such
research through state and local TB programs.
---------------------------------------------------------------------------
\7\ U.S. Centers for Disease Control and Prevention. Tuberculosis
Trials Consortium--Research Projects. Division of TB Elimination.
https://www.cdc.gov/tb/topic/research/tbtc/projects.htm.
---------------------------------------------------------------------------
Decades of stagnant appropriations for DTBE have led to the
Division currently being funded at nearly the same level as it was in
fiscal year 1994 (see right figure on impact of inflation). Factoring
in the rate of inflation over that period, that stagnant funding level
has drastically reduced the purchasing power of DTBE.\8\ In addition,
the costs of TB diagnosis and treatment have steadily risen, especially
for drug-resistant forms of TB which can now cost up to several hundred
thousand dollars to treat per person.\9\ As a direct result, DTBE has
been forced to do more with less, necessitating difficult decisions
about resource allocation to its lifesaving programmatic and research
initiatives. Without sufficient funding to bolster our nation's TB
programs, implementation of U.S.-led TB treatment strategies and
interventions made possible through publicly funded research at TBTC,
remains severely limited.
---------------------------------------------------------------------------
\8\ Treatment Action Group. The TB Research Engine That Could:
Sustaining the Success of the Tuberculosis Trials Consortium in
Turbulent Times. 2021 April. https://www.treatmentactiongroup.org/
publication/the-tb-research-engine-that-could/.
\9\ U.S. Centers for Disease Control and Prevention. CDC Fact
Sheet: The Costly Burden of Drug Resistant TB Disease in the U.S..
National Center for HIV, Hepatitis, STD, and Tuberculosis Prevention--
Newsroom. https://www.cdc.gov/nchhstp/newsroom/docs/factsheets/costly-
burden-dr-tb-508.pdf.
---------------------------------------------------------------------------
The COVID-19 pandemic has worsened these capacity constraints.
According to a survey of TB program staff in the US, 87% of respondents
reported that they or their colleagues had been either partially or
completely reassigned to work on COVID-19.\10\ In many cases, these
reassignments were indefinite, and state and local TB programs continue
to operate under reduced capacity and temporary leadership. Many TB
clinics, hospitals, and other resources were also designated
exclusively for use in the COVID-19 pandemic response, as they were
uniquely outfitted for airborne isolation. The expertise of TB public
health clinicians, researchers and practitioners in particular, are
drawn upon in the COVID-19 response for their critical experience in
addressing an airborne infection.
---------------------------------------------------------------------------
\10\ Stop TB Partnership. The Impact of COVID-19 on the TB
Epidemic: A Community Perspective. Geneva: March 2021 https://
spark.adobe.com/page/xJ7pygvhrIAqW/.
---------------------------------------------------------------------------
Some of the impacts of the pandemic are not yet visible. TB case
reporting dropped by 20% in 2020 compared to 2019. Unprecedented
barriers to accessing testing and care stemming from COVID-19 health
service disruptions and the reallocation of TB staff and resources from
conducting contact tracing, community outreach, and TB treatment
monitoring, to COVID-19 response efforts are likely the major causes of
this steep drop in TB notifications.\11\ The impacts of this reduced
capacity to prevent and respond to TB cannot be overstated, and the
costs of recovering from such impacts will be much higher than current
funding levels allow.
---------------------------------------------------------------------------
\11\ Deutsch-Feldman M, Pratt RH, Price SF, Tsang CA, Self JL.
Tuberculosis--United States, 2020. MMWR Morb Mortal Wkly Rep
2021;70:409-414. DOI: https://www.cdc.gov/mmwr/volumes/70/wr/
mm7012a1.htm?s_cid=mm7012a1_w.
---------------------------------------------------------------------------
Stagnant funding, and the additional damage wrought by the COVID-19
pandemic, also threaten TB research and development efforts at DTBE. In
the aforementioned recent TBTC ``re-competition'' process for the next
10-year funding cycle, four of the prominent academic institutions that
housed some of the crucial leadership for TBTC's most promising studies
were excluded in the subsequent cycle due to shrinking research dollars
to expand this highly successful clinical trials network.\12\ The
collective TB expertise held within these institutions is
irreplaceable. Higher funding levels for DTBE and its research
initiatives, such as TBTC, are vital to retain the invaluable
experience necessary to complete study enrollment, data collection,
analysis, publication, and translation into policy. Furthermore,
expanded resources would position TBTC to embark on a new era of
clinical research led by these partners, building on its success
shortening treatment and prevention of TB and looking to future
opportunities, such as the possibility of TBTC trialing novel TB
vaccines. However, without an increase in funding, this experience will
be lost, taking with it the promise of TB research breakthroughs like
those shown in TBTC Study 31, which demonstrated the first effective
short course TB treatment in over 40 years.\13\
---------------------------------------------------------------------------
\12\ Treatment Action Group. The TB Research Engine That Could:
Sustaining the Success of the Tuberculosis Trials Consortium in
Turbulent Times.
\13\ U.S. Centers for Disease Control and Prevention. Landmark TB
Trial Identifies Shorter-Course Treatment Regimen. National Center for
HIV, Hepatitis, STDs, and Tuberculosis Prevention--Newsroom. 21 October
2020 https://www.cdc.gov/nchhstp/newsroom/2020/landmark-tb-trial-media-
statement.html.
---------------------------------------------------------------------------
In order to avert further devastating impacts on TB programs,
prevention, care, and research, increased funding for CDC DTBE is
critically important. TAG requests that the subcommittee appropriate
$225 million--an increase of $90 million--to safeguard the lifesaving
progress that DTBE has made against TB in the US, sustain and grow the
government's vital TB research agenda at TBTC by retaining critical R&D
expertise, and to bring us closer to the elimination of TB once and for
all, here and abroad. We thank you for your support of public health
programs and research, and we look forward to working with you to
ensure the health of all those impacted by TB in the US and around the
world.
______
Prepared Statement of the Treatment Action Group
Treatment Action Group (TAG) thanks the esteemed members of the
subcommittee for the opportunity to submit testimony regarding funding
for the government's End the HIV Epidemic (EHE) at the U.S. Centers for
Disease Control (CDC) Division for HIV Prevention (DHAP) for fiscal
year 2022 (FY22) appropriations. TAG is an independent, activist, and
community-based research and policy think tank committed to racial,
gender, and LGBTQ+ equity; social justice; and liberation, fighting to
end HIV, tuberculosis (TB), and hepatitis C virus (HCV). We work
closely with community partners and stakeholders in the jurisdictions
funded by the federal government's EHE initiative towards an inclusive,
community-centered approach to end the HIV epidemic across our country.
TAG requests that the Subcommittee exceed the President's budget
proposal for the CDC EHE initiative of an $100 million increase in FY22
with an additional increase of $96 million to a total of $196 million
for DHAP ETE. In particular these resources would be critical to expand
EHE efforts, advance and expand vital community partnership activities,
and mitigate the impact of the COVID-19 pandemic among the hardest-hit
jurisdictions.
While there has been immense progress in the HIV epidemic with
rates declining from 37,500 new infections in 2015 to 34,800 infections
in 2019--much work remains on truly ending the epidemic in the hardest-
hit jurisdictions and populations in the U.S.\1\ HIV rates are not
evenly distributed across the nation and continue to be primarily
skewed towards the Southern states as the bulk of new diagnoses.\2\
Even more concerning, HIV disparities continue to severely persist
among the Black and Latinx communities. We see these troublesome trends
particularly among Black and Latinx gay and bisexual men, as well as
Black women. Black communities represent 13% of the U.S. population,
but make up 44% of new diagnoses.\3\ Similarly, Latinx communities
represent 18% of the U.S. population and account for 30% of new HIV
diagnoses.\4\ HIV comparably disparages Native American community,
people of trans experience, and people who use drugs with stark
disparities.
---------------------------------------------------------------------------
\1\ Health Resource and Services Administration. HIV Data and
Trends. HIV.gov. https://www.hiv.gov/hiv-basics/overview/data-and-
trends/statistics.
\2\ Ibid.
\3\ U.S. Centers for Disease Control and Prevention. Racial and
Ethnic HIV Rates--African Americans and Hispanic/Latinos. Division of
HIV/AIDS Prevention. https://www.cdc.gov/hiv/group/racialethnic/
africanamericans/index.html.
\4\ Ibid.
---------------------------------------------------------------------------
It is of no surprise that social determinants of health deeply
impact these communities. These include housing, food security,
employment and economic justice, as well as undoing numerous policies
that violate the human rights of these communities and limit their
ability to seek treatment and care. Criminalization for example is
intertwined with the HIV epidemic, with many states continuing to have
arcane laws that do not align with science and only further stigmatize
communities of people living with, and vulnerable to HIV. Without
addressing the myriad of social, economic and legal needs of
communities impacted by HIV through a combination of targeted resources
and a human-rights policies, reaching the vision for ending the
epidemic across all communities will remain unclear and unattainable.
The previous administration ambitiously approached this challenge
of ending the HIV epidemic once and for all, by redoubling U.S. efforts
and formulating the landmark EHE initiative that would direct federal
resources towards 57 jurisdictions hardest-hit by HIV through CDC and
HRSA. While Congress, has responded in lockstep with bipartisan
increases to EHE since its inception, we believe that the COVID-19
pandemic has significantly impacted efforts at the community-level,
requiring a significant scale up in assistance to these jurisdictions.
Organizations and partners involved in the ACT NOW:END AIDS
coalition--of which TAG is a cofounder--report significant impact upon
services and outreach efforts to communities impacted by HIV. The lack
of swift and robust federal guidance on COVID-19 to HIV organizations
in the early stages of the pandemic led to many organizations having to
decide between either risking the safety of their staff by continuing
essential services, or temporarily closing programs. Additionally, many
already financially strained organizations struggled to obtain the
technologies necessary for telemedicine and many reported that
clients--especially low-income, and unstably housing individuals--could
not access these tools. Such delays led to clients missing care and
contributed to an overall sense of burnout among HIV professionals.
In addition to the direct impact upon services for PLHIV and
communities vulnerable to HIV, we have noted a significant shift in
human resources and public health personnel detailed to the COVID-19
pandemic. CDC HIV program staff are also contributing significantly to
the nation's COVID-19 response. The pandemic has caused severe
disruptions to care and treatment activities of the National Center for
HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (NCHHSTP). According
to research from the Kaiser Family Foundation, nearly 700 CDC staff
(with 1,125 cumulative deployments) from NCHHSTP have been detailed and
deployed to the COVID response since the early days of the pandemic.\5\
This is primarily due to the Center staff's expertise in infectious
diseases. HIV public health practitioners from the CDC are drawn upon
for the COVID-19 pandemic, primarily for their expertise in centering
communities in prevention efforts and their ability to form key
relationships, conduct outreach, while grounding public health
prevention work in respect for human rights. However, scarce public
health resources and personnel corresponds to a shift away from EHE
efforts.
---------------------------------------------------------------------------
\5\ Dawson L, Kates J. Issue Brief: Key Questions on HIV and COVID-
19. Kaiser Family Foundation. 20 May 2021. https://www.kff.org/
coronavirus-covid-19/issue-brief/key-questions-hiv-and-covid-19/.
---------------------------------------------------------------------------
Furthermore, HIV community contributions to the COVID-19 response
have been significantly extended through HIV/AIDS research investments
at the National Institutes of Health (NIH) as well. For example, HIV
research first piloted the of use mRNA as a vaccine platform for HIV
prevention. These previous investments in HIV vaccine research boosted
the development of widely disseminated COVID-19 vaccines that
increasingly leveraged the well-developed research infrastructure of
HIV research.\6\
---------------------------------------------------------------------------
\6\ Chibbaro L. HIV Research Sped the Develop of the COVID-19
Vaccine. Washington Blade. 23 June 2021 https://
www.washingtonblade.com/2021/06/23/hiv-research-sped-development-of-
covid-vaccine/.
---------------------------------------------------------------------------
In sum, the programmatic and research contributions of HIV have
been invaluable to the nation's COVID-19 response. But the shift in HIV
sector resources leaves EHE efforts in peril and limited in reaching
its ambitious goals for treatment and prevention of HIV. Due to the our
weakened public health infrastructure that COVID-19 leaves in its wake,
without significantly targeted and expanded resources, HIV disparities
will continue to be deeply entrenched in our nation's historically
disenfranchised and marginalized communities. We urge the subcommittee
to maximize resources to backfill the contributions of the HIV sector
and launch our HIV response with the same level of vigor that we saw
with the COVID-19.
To that end, we request an allocation of at least $196 million in
FY22 for CDC DHAP EHE Plan to begin to align the necessary resources to
mitigate the effects of COVID-19 upon struggling HIV programs and
shore-up the necessary HIV infrastructure. We applaud the
administration's and Congressional attention towards rooting out
systemic racism, and believe that these investments will go a long way
to begin addressing HIV as health disparity that primarily effects
communities of color.
Thank you for the members of the subcommittee for this opportunity
to submit testimony in support of CDC DHAP ETE initiative. We hope you
will take action and recommit to realizing the end of the HIV epidemic
with urgent, new resources.
______
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) 2022 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. Communities across the country
are overwhelmed with responding to the Coronavirus Disease 2019 (COVID-
19) 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. TFAH's recent report, The
Impact of Chronic Underfunding on America's Public Health System, finds
that although health threats continue to increase, core public health
budgets at the federal and state levels remain stagnant.\1\ 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 similar pattern since 9/11 of annually underfunding core
public health and then providing significant infusions of emergency
funding for a short time when a disaster hits. This is like building a
house on a shaky foundation. Without an investment in public health
year in and year out, problems cannot be prevented, or emergencies
reduced. While many thanks are due for your support during COVID, now
is the time to fix an underfunded system so we can ensure every
resident of the nation has the chance for optimal 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 $10 billion for the FY2022 budget, including investing in
these effective public health programs (unless otherwise noted, all
programs are in CDC):
---------------------------------------------------------------------------
\1\ The Impact of Chronic Underfunding of America's Public Health
System. Trust for America's Health 2021. https://www.tfah.org/report-
details/pandemic-proved-underinvesting-in-public-health-lives-
livelihoods-risk/.
---------------------------------------------------------------------------
emergency preparedness
The COVID-19 response was weakened because the CDC's emergency
preparedness funding had been repeatedly cut, reducing essential
training and eliminating expert personnel. The CDC's Public Health
Emergency Preparedness (or PHEP) cooperative agreement has been reduced
by a quarter since FY2003 (48 percent when inflation is considered).
PHEP grants support 62 state, territorial, and local grantees to
develop core public health capabilities, including in areas of public
health laboratory testing, health surveillance and epidemiology,
community resilience, countermeasures and mitigation, incident
management, and information management. TFAH recommends at least $824
million for the PHEP (CDC), the level authorized in 2006.
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,
has been cut in half since FY2003 (62 percent when inflation is
considered). HPP provides critical funding and technical assistance to
health care coalitions (HCCs) across the country to meet the disaster
healthcare needs of communities. There are 360 HCCs, comprised of
public health agencies, hospitals, emergency management and others,
that develop and implement healthcare and medical readiness plans;
response coordination; continuity of healthcare services delivery; and
medical surge. TFAH recommends at least $474 million for HPP (PHSSEF),
the level authorized in 2006.
environmental health
Not all federal emergencies are caused by infectious disease. Many
occur due to environmental factors. Here, too, core funding has been
insufficient. 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, the Tracking Network is a cost-effective program that
examines and combats harmful environmental factors.\2\ Yet only half
the states receive funding. TFAH recommends at least $40 million for
National Environmental Public Health Tracking Network (CDC), which
would enable at least three additional states to join the network.
---------------------------------------------------------------------------
\2\ Return on Investment of Nationwide Health Tracking, Washington,
DC: Public Health Foundation, 2001.
---------------------------------------------------------------------------
obesity and chronic disease prevention
The COVID-19 pandemic has been exacerbated by preventable, chronic
health conditions, including obesity. In 2017-2018, 42.4 percent of
adults had obesity.\3\ 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.\4\ This Division funds state health
departments to protects the health of all Americans by promoting
healthy eating, active living, and obesity prevention in early care and
education facilities, hospitals, schools, and 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
allow CDC to continue building its capacity and scaling its
interventions.
---------------------------------------------------------------------------
\3\ State of Obesity 2020. Trust for America's Health. Sept 2020.
https://www.tfah.org/report-details/state-of-obesity-2020/.
\4\ 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.
---------------------------------------------------------------------------
Additionally, this year we once again saw the impact of inequities
in social and economic conditions facing people of color and tribal
nations. Among the programs at CDC that are effective in reducing
racial and ethnic health disparities are Racial and Ethnic Approaches
to Community Health (REACH) program and Good Health and Wellness in
Indian Country (GHWIC). CDC's REACH) program, within DNPAO, works in 31
communities across the country. It supports innovative, community-based
approaches to develop and implement evidence-based practices, empower
communities, and reduce racial and ethnic health disparities. As we are
seeing the effect that underlying health disparities are having on
COVID-19 patients, we urge renewed investment in programs such as REACH
that promote health equity. TFAH recommends at least $102.5 million for
REACH (CDC) to restore funds historically diverted from core REACH
programs. Within that total, TFAH recommends at least $27 million for
the Good Health and Wellness in Indian Country (GHWIC) program. Also
within DNPAO, GHWIC works with 21 tribes directly and funds 15 Urban
Indian Health Centers and 12 Tribal Epidemiology Centers (TECs). GHWIC
supports healthy behaviors in Native communities by supporting
coordinated and holistic approaches to chronic disease prevention,
continuing to support culturally appropriate, effective public health
approaches, and expanding the program's reach and impact by working
with more tribes and tribal organizations, including Urban Indian
Organizations. In addition, these GHWIC funds support the Tribal
Epidemiology Centers for Public Health Infrastructure (TECPHI).
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. DASH programs reach approximately 2 million of the 26
million middle and high school students. TFAH recommends at least $100
million for DASH (CDC) to expand its work to 20 percent of all middle
and high school students.
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 collaborations between the public health and aging sectors.
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.
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,\5\ as illustrated by
disparate outcomes and risk from COVID-19. Public health agencies are
uniquely situated to build these collaborations across sectors,
identify SDOH priorities in communities, and help identify strategies
that promote health. Currently most public health departments lack
funding and tools to support such cross-sector efforts and are limited
by disease-specific federal funding. TFAH thanks for the Committee for
$3 million in FY2021 to establish a new CDC SDOH program. We recommend
the Committee fund CDC to support local and state public health
agencies to convene across sectors, gather data, identify priorities,
establish plans, and take steps to address and improve community social
and economic conditions that promote health. 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 states and localities.\6\ More than 200 organizations have
endorsed this funding level.\7\
---------------------------------------------------------------------------
\5\ 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
\6\ The President's request for fiscal year (FY) 2022 discretionary
funding. (2021). Executive Office of the President. https://
www.whitehouse.gov/wp-content/uploads/2021/04/FY2022-Discretionary-
Request.pdf.
\7\ Letter to House Appropriations LHHS Subcommittee. April 26,
2021. https://www.tfah.org/wp-content/uploads/2021/04/
CDC_SDOHFunding_SignOn.pdf.
---------------------------------------------------------------------------
suicide prevention
In 2019, suicide took 47,500 lives, and rates increased by 33
percent between 1999 and 2019.\8\ The complex nature of this issue
requires a comprehensive program that focuses on vulnerable
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 the risk.
The programs consist of multisector partnerships, use of data to
identify vulnerable populations and risk and protective factors,
leveraging existing suicide programs and filling gaps through
complementary strategies and effective communications. TFAH recommends
at least $36 million to expand innovative prevention activities to an
estimated 25 sites from its current number of nine, and to support
state health departments as they develop and implement comprehensive
suicide prevention plans.
---------------------------------------------------------------------------
\8\ Suicide Prevention, CDC. https://www.cdc.gov/suicide/.
---------------------------------------------------------------------------
adverse childhood experiences
CDC estimates that if Adverse Childhood Experiences (ACEs) such as
abuse and neglect were prevented, there would be 21 million fewer cases
of depression, 1.9 million fewer cases of heart disease, and 2.5
million fewer cases of obesity.\9\ Preliminary evidence suggests the
pandemic is likely to increase children's exposure to ACEs due to
economic hardship, increased stresses on families, and reduced access
to school-based services and supports.\10\ CDC's approach to ACEs
prevention involves translating research into action and helping states
identify and implement effective prevention strategies. In 2020, four
state health departments were awarded funding to enhance or build
infrastructure for ACEs surveillance, implement strategies to prevent
ACEs, and leverage multisector partnerships to coordinate prevention
activities. TFAH recommends at least $7 million to expand innovative
ACEs prevention activities to four additional state health departments
and to build upon CDC's work on preventing early adversity in life and
mitigating the impact of ACEs on healthy child development.
---------------------------------------------------------------------------
\9\ BRFFS 2015-2017, 25 states, CDC Vital Signs, November 2019.
https://www.cdc.gov/vitalsigns/aces/index.html.
\10\ MMWR 2021, https://www.cdc.gov/mmwr/volumes/69/wr/
mm6949a1.htm.
---------------------------------------------------------------------------
conclusion
The COVID-19 pandemic has underscored the dangers of the chronic
underfunding of public health. It has also exposed and exacerbated
longstanding disparities that have plagued our nation for far too long.
It is imperative that we not wait for the next emergency to fix this
problem. Instead, now is the time to invest in public health and fund
CDC at $10 billion in FY 2022, to become a more resilient and healthy
nation. Thank you for the opportunity to present this testimony to the
Committee.
[This statement was submitted by J. Nadine Gracia, MD, MSCE,
President & CEO, Trust for America's Health.]
______
Prepared Statement of United for Charitable Assistance
summary of fiscal year 2022 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 provide meaningful funding increases for medical research
and public health progress to initiate further progress and
improve outcomes for the patient community.
_______________________________________________________________________
Chairwoman Murray, Ranking Member Blunt, and distinguished members
of the Subcommittee, thank you for your leadership on patient care, and
coverage and access issues. On behalf of United for Charitable
Assistance (UCA), we deeply appreciate the opportunity to provide a
critical, patient-centered perspective as you consider FY 2022
appropriations issues that impact healthcare coverage and patient
access. Most notably, we urge you to continue to advance committee
recommendations that feature and emphasize the need to quickly restore
access to critical charitable assistance programs that serve patients
with no other options. Moreover, please continue the investment in
medical research and public health activities. The COVID-19 pandemic
has hit the patient community hard and identified a litany of reasons
to enhance resources for medical research and public health while
addressing critical coverage and access challenges for those with the
greatest need (such as due to pandemic related job loss). Thank you
again for this important opportunity. Please consider UCA a resource on
moving forward.
about united for charitable assistance
We are a growing 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).
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. Finally, there is now an emerging practice for employer-
provided insurance known as the ``alternative funding model''. This
prescription drug procurement model improperly utilizes drug
manufacturers' free assistance programs to the detriment of patients
who are forced to continually switch drugs. Further, any costs
associated with filling the prescriptions or obtaining the medications
are not counted toward a patient's out-of-pocket insurance costs.
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.
contemporary examples of charitable assistance challenges
Ms. Lisa Wright is a patient advocate for the Fabry Disease
Community. Fabry disease is a rare genetic disorder that prevents the
body from making a certain enzyme called alpha-galactosidase A. The
symptoms of Fabry Disease are varied and progressive including kidney,
heart and neurological damage. There are several FDA approved
treatments for Fabry Disease. However, those treatments are very
expensive and as more and more costs are shifted to patients they need
access to financial assistance programs. Lisa is a wonderful example of
the importance of patient assistance. Lisa receives health insurance
premium and copayment assistance from a charitable assistance program.
This enables Lisa to remain working and volunteering for her community.
Patient assistance groups help Lisa and many other Fabry disease
patients obtain access to these expensive treatments and therapies
which mitigate the symptoms of the disorder and keep patients living
productive lives. Congress should work to ensure access to these
programs.
The situation of Dr. Jeffrey Swigert is an example of the new
Alternative Funding. Dr. Swigert is the father of two children with
Cystic Fibrosis. Cystic Fibrosis is a progressive, genetic disease that
causes persistent lung infections and limits the ability to breathe
over time. Dr. Swigert's employer is a self-insured plan that has
implemented a carve out for specialty treatments such as those for
cystic fibrosis. The employer will not cover treatments but instead
attempts to obtain them free of charge from manufacturer compassionate
treatment programs. However, the manufacturer programs are individual
with their own specific criteria. These programs are often time limited
and reserved for patients who are uninsured. Congress needs to review
this practice and potentially introduce legislation to modify.
recommendation
Please include committee recommendations, similar to the language
below, in the committee report accompanying the FY22 Senate L-HHS
Appropriations Bill. Please also work through the annual appropriations
process to facilitate a meaningful dialogue between the community and
HHS on challenges, opportunities, and potential solutions. Thank you
for your time and for your consideration of this request.
centers for medicare and medicaid services program management
Charitable Assistance and the Healthcare Safety Net.--The Committee
notes the important role that third-party charitable assistance plays
in regards to maintaining access to care and therapies, particularly
for patients impacted by life-threatening illness that have no other
options. The Committee notes the current significance of premium
assistance, co-pay assistance, travel assistance, and related programs
due to COVID-19 related economic challenges and loss of employment, and
their disproportionate role in ensuring access to care for those with
health disparities and from underserved communities. CMS is encouraged
to re-evaluate policies that facilitate pre-existing condition
discrimination for patients with serious illness by allowing covering
entities to reject or simply not apply assistance from independent
charities.
[This statement was submitted by James Romano, Executive Director,
United for Charitable Assistance.]
______
Prepared Statement of the United States Workforce Associations
Dear Chairman Murray and Ranking Member Blunt:
The undersigned organizations make up the United States Workforce
Association (USWA), a collaborative effort of local workforce boards,
businesses, educational institutions, and organizations involved in
workforce and economic development activities across the country. These
organizations are directly involved in the implementation of the
bipartisan Workforce Innovation and Opportunity Act (WIOA) of 2014,
specifically promoting the successful execution by local workforce
boards of the law to serve businesses, employers, and job--and career-
seekers. As our country grapples with unprecedented demand for
unemployment insurance and economic recession within the COVID-19
pandemic, the employer-led, local workforce development system
continues to respond with critical supports and services. Adequate
federal funding would ensure the system is poised to address these
community needs as we continue to recover from the devastating health
and economic effects of COVID-19.
As the Senate Appropriations Committee considers the Fiscal Year
2022 Labor-HHS Appropriations Bill, we urge you to support further
federal investment into WIOA and fully fund the law beyond its FY2020
authorized levels. Appropriated levels have fallen short of authorized
levels specifically in Title I accounts at the Department of Labor
(Adult Employment and Training Services, Youth Workforce Investment
Activities, and Dislocated Worker Employment and Training Services). An
expanded federal investment across WIOA programs leads to more job
training, education, skills development and innovative, proven
practices like industry-based sector partnerships, career pathways, and
apprenticeships. These strategies need to be implemented seamlessly to
respond to the effects of COVID-19. The established local workforce
system is well-positioned to enhance efforts for an equitable recovery;
low wage, low skill workers and minority populations were hit hardest
by COVID-19. The federal funding structure, which allows these funds to
be invested locally, provides for intentional investments to help those
most in need.
Local workforce development leaders are engaged directly with
businesses to help keep individuals employed and design training/
education programs to prepare the workforce for the future. We continue
to work with unemployed individuals to help them stay connected to the
workforce and evaluate other opportunities; recent BLS data suggests
nearly 41% of those unemployed have been unemployed for at least 27
weeks (long-term unemployed).\1\ Business services, especially for
small and medium-sized enterprises, have been critical during the
COVID-19 pandemic as employers sought to maintain payrolls and find
workers as businesses began to re-open. Increased federal
appropriations are greatly needed to address this unprecedented health,
economic, and social destabilization.
---------------------------------------------------------------------------
\1\ https://www.bls.gov/charts/employment-situation/unemployed-27-
weeks-or-longer-as-a-percent-of-total-unemployed.htm.
---------------------------------------------------------------------------
The Fiscal Year 2022 Labor, Health and Human Services, Education,
and Related Agencies Appropriations bill must fully fund all Titles I,
II, III, and IV at a minimum to the level authorized by the Workforce
Innovation and Opportunity Act (WIOA).
The funding levels we are requesting in the FY2022 Labor, HHS,
Education Appropriations Bill are listed below:
Title I--Department of Labor
--At least $899.987 million for Adult Employment and Training
Services,
--At least $963.837 million for Youth Workforce Investment
Activities, and
--At least $1.436 billion for Dislocated Worker Employment and
Training Services
Title II--Department of Education
--$678.640 million for Adult Education
Title III--Department of Labor
--$692,370,000 for Wagner-Peyser (FY2021 Enacted)
Title IV--Department of Education
--$3,675,021,000 for Vocational Rehabilitation Services (FY2021
Enacted)
This training, support and business partnership is vital to our
country's economic prosperity. For further information, please contact
Chris Andresen.
Sincerely,
______
Prepared Statement of the University of California San Francisco
School of Medicine
Committee Members,
I am writing in support of a FY 2022 budget request for Department
of Health and Human Services to develop a strategic plan and national
strategy to improve the diagnosis, treatment and prevention of herpes
simplex virus, types 1 and 2 (HSV). According to the Centers for
Disease Control and Prevention, over half of Americans have been
infected with HSV type 1 which can cause cold sores and genital ulcers,
and one in eight Americans are currently infected with HSV type 2,
which causes recurrent genital ulcers and is associated with
significant stigma. There are significant disparities by race and
sexual orientation, with HSV-2 impacting nearly half of all Black
women, and approximately one in three men who have sex with men, with
HSV being linked to HIV acquisition and transmission. Similar to HIV,
HSV can be transmitted from mother to child during birth, which causes
approximately 1,000 infant deaths annually. However, due to the poor
quality of currently available antibody tests, routine testing in
pregnancy or of the general population is not recommend by the United
States Preventive Services Task Force. Finally, there is a growing body
of evidence associating HSV to neurodegenerative diseases such as
Alzheimer's, highlighting the urgency to develop better prevention and
treatment strategies.
As a practicing clinician in the field of sexual health, I cannot
overstate the negative impact of herpes simplex virus on patients'
mental health. Countless studies have documented the mental health toll
of an HSV diagnosis on a patient's well-being, and though not usually a
fatal or serious infection itself, can lead to significant anxiety and
depression given the burden of living with a chronic infection which
must be disclosed to all future sex partners.
There is currently no national strategy to address HSV in the
current Federal STI Strategic Plan (2021-2025). There is no
surveillance for the condition, including its fatal outcomes among
neonates. The majority of disease spread is via asymptomatic carriers
unaware of their status. While antibody testing is readily available,
it is prone to false positive results and there is poor access to
confirmatory testing such as the Western Blot (previously used widely
for confirmation of positive HIV results, but not widely available for
herpes simplex virus). Given the implications for neonatal health, HIV
transmission, and potential impact on general population of sexually
active Americans, there is an urgent need for investment into the
development of more accurate diagnostic testing, prophylactic and
therapeutic vaccines, and antiviral medication that is more effective
at viral suppression.
In short, if we care about maternal-child health, the health of
communities of color, LGBTQ and other at-risk communities, and the
mental health of Americans, we must prioritize funding to address
herpes simplex virus infections.
Sincerely.
[This statement was submitted by Ina Park, MD, MS, Associate
Professor,
Departments of Family and Community Medicine & Obstetrics, Gynecology,
and
Reproductive Sciences, UCSF School of Medicine.]
______
Prepared Statement of the Washington State Association of
Head Start and ECEAP
Dear Chairman Murray, Ranking Member Blunt, and Members of the
Subcommittee,
On behalf of the Head Start community, thank you for this
opportunity to share the FY22 recommendation for Head Start funding.
I have the distinct pleasure of serving as the Executive Director
of the Washington State Association of Head Start and ECEAP (WSA)--a
statewide non-profit organization composed of representatives from Head
Start, Early Head Start, Migrant/Seasonal Head Start, Native American
Head Start and the Early Childhood Education and Assistance Program
(ECEAP, the statewide early childhood program). WSA represents 52 Head
Start programs from Bellingham to Walla Walla, including migrant and
seasonal and tribal programs. We are immensely proud of our efforts to
build early learners and support families facing financial hardships.
These past 16 months have been like none other. The COVID-19
pandemic has tested and challenged the nation's 1,600 Head Start
programs and required program managers and directors to adapt
overnight, think creatively, and juggle the complexities of supporting
children and families while also protecting them as well as staff and
meeting local, state, and federal guidelines. Last program year, little
did we know, social distancing, virtual learning, higher health and
sanitation standards, and workforce safety would emerge as daily issues
and priorities.
Thankfully, Congress and this Committee stood with us through this
turbulent season. Because of you, Head Start programs by and large were
able to return to services quickly, stay open, and support children
with in-person learning. When the first major outbreak overtook
Washington state, in-person services had to be re-thought and virtual
learning options made swiftly available. Quickly and competently,
programs responded to emerging family needs including delivering food,
learning materials, and cleaning supplies to doorsteps, holding Zoom
dance parties with preschoolers, and supporting the mental health needs
of parents and guardians. Several Head Start programs remained open
onsite during the entirety of the pandemic including the Denise Louie
Education Center in Seattle which provided childcare to many front line
and essential workers and parents that needed to be at work in person.
These heroic efforts undertaken by the Head Start community this
past year would not have been possible without COVID-19 relief funding
from Congress. Thank you.
As Head Start increasingly returns to regular programming and
doubles down on recruitment and enrollment, and the nation comes out
from underneath the cloud of COVID-19, the National Head Start
Association (NHSA) is seeking $12.1 billion in FY22. This level of
funding will help Head Start programs get back on track in three
distinct ways:
(1) by reassuring and bolstering the workforce ($247 million);
(2) by addressing growing and compounded childhood trauma through
staff training and additional counseling support ($363
million); and
(3) by extending program duration for programs and families
desperate for more hours of care and support ($730 million).
These are all long-standing priorities for NHSA and for programs
across the country--workforce investment, Quality Improvement Funding
for trauma-informed care, and extended duration--and we look forward to
working with Congress to meet these goals. Addressing these critical
needs is foundational to delivering the best results for children from
at-risk backgrounds.
Equally important to the quality of our programs and the health,
safety, and future success of Head Start is a long-overdue, often
overlooked issue: infrastructure.
Five years ago, the US Department of Health and Human Services
identified over $4.2 billion in Head Start capitalization needs, yet
Head Start's facilities needs have largely gone unaddressed. Local
programs are unable to afford critical health and safety updates, to
support access and compliance with the Americans with Disabilities Act,
to acquire licensable space in new neighborhoods, or to make modest
updates to align with what we know is best for early childhood
facilities. Head Start programs are serving children and families from
the most at-risk backgrounds-those below the poverty line and a
disproportionate share of children of color. In many cases, these
children are in buildings that are a half-century old, crumbling, and
out-of-date. Our Head Start programs, the children who spend most of
their days in these centers, and the communities that house these
facilities are in desperate need of long overdue investment.
In the state of Washington, our programs have persistently
underfunded facility construction and classroom upgrades. Washington
State Head Start programs are in desperate need of:
--HVAC systems and air filtration.
--Building repairs, including stairs and railings.
--Updated and/or new buses to ensure children can consistently get
back and forth to school.
--New classrooms to handle an influx of children who need in person
services; and
--Funds to build and construct new early learning facilities.
Please allow me to share specific examples from Head Start
providers in my state:
Tulalip Tribe Head Start currently serves 74 Early Head Start
children, 80 state funded preschool children, 112 child care spots, and
112 tribally funded kids. They need $1.6 million to add three
classrooms to their Head Start/Child Care wing. This expansion project
would address social distancing needs to meet licensing requirements
and the influx of children moving from remote to in-person learning
this fall as well as enable programing for another 30 children and
families.
This year has highlighted the need for outdoor play and learning
spaces. Family Services of Grant County in Moses Lake has active plans
to acquire neighboring property to create outdoor classroom space for
each preschool room. This expansion would add gardens and make critical
safety improvements. The cost of this project totals $1 million.
Moses Lake is also in immediate need for a larger transportation
and maintenance building, additional parking, and improved drop-off
vehicle access. The existing garage space is restrictive and lacks on-
site storage. Moses Lake would like to turn the current garage into
storage space, and build a new bus barn with more bays, so that the
current space could be used as a small mechanical repair shop and
perform preventative maintenance, reducing costs and extending the life
of existing buses. They estimate that the cost for this project is
about $1.7 million.
Finally, Okanogan County Child Development Association (OCCDA) in
Northeast Washington has struggled to find long-term, sustainable
educational space for five years and COVID-19 guidelines exacerbate
this concern. OCCDA previously partnered with the Tonasket School
District but after failed levy attempts, and the school district's own
struggles for space, the lease was terminated in 2017. This forced
OCCDA to relocate Tonasket Head Start and ECEAP programs to the
building that was used for Early Head Start and subsequently relocate
Early Head Start to a local church for a short period before landing at
a workable, but not ideal downtown location. These moves have squeezed
more children and staff into fewer and fewer square feet.
In 2018, OCCDA applied and was awarded and the Early Learning
Facilities Technical Assistance Grant to plan for a potential future
consolidated learning center; however, funds to purchase the property
and build the facility are still lacking. The estimated cost for
purchase and build at the time of our Feasibility Study was $1.5
million. For OCCDA, the pandemic has made a bad infrastructure concern
far worse. As a result, current facility size and availability limits
OCCDA's ability to conduct five-day per-week in-person classes to two
days a week in Tonasket.
These examples are replayed over and over again in the 52 Head
Start programs in the State of Washington. While there is a strong
desire to return to pre-COVID-19 conditions, for Head Start programs,
the road back is harder and longer. Candidly, we are not interested in
simply ``going back.'' We want to go forward. The pandemic has shone a
bright light on deferred maintenance and strained or inadequate
childcare facilities. Every Head Start program would welcome more
children, however, the present-day constraints in many ways prevent
expansion. Meaningful investments in our infrastructure--alongside
funding for our workforce, sustained support for mental health and
trauma response, and strengthening our existing program service hours--
are critical in FY22 to helping children and families make a strong
return.
In the days and weeks ahead, the Head Start community would
appreciate Congress's full embrace of the NHSA FY22 Recommendation of
$12.1 billion. The community also urges Congress to commit to an
examination of Head Start's infrastructure constraints and how the
federal government might partner with local programs to address these
urgent needs.
Thank you for your consideration.
[This statement was submitted by Joel Ryan, Executive Director,
Washington State Association of Head Start and ECEAP.]
______
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) 2022 LHHS appropriations bill. As you begin work on FY 2022
appropriations, we respectfully request that you provide $46.11 billion
for the National Institutes of Health (NIH) as well as additional
emergency funds to support the biomedical research enterprise recover
from the COVID-19 pandemic. We also request that you consider including
our report language on ``Diversity of the Biomedical Research
Workforce'' and the ``BIRCWH Fellows Program'' in the report that
accompanies the final FY 2022 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. As Congress appropriates
funding for FY 2022, the WFRC is requesting that Congress provide
$46.11 billion, an increase of $3.1 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. 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.
As the country continues to address the COVID-19 pandemic, WFRC
also requests additional emergency supplemental funding for NIH to
address the costs associated with restarting biomedical research
including the increased costs of research related to personal
protective equipment, reagents, and existing drugs in the COVID-era as
well as ensure early stage and early established investigators remain
part of the biomedical research workforce. We are deeply appreciative
of the emergency funds Congress has already appropriated, but
additional emergency funding is needed to enable a full recovery from
the pandemic.
We urge Congress to designate a portion of these emergency funds
for the Eunice Kennedy Shriver National Institute for Child Health and
Human Development (NICHD), the National Institute of Diabetes and
Digestive and Kidney Diseases (NIDDK), and the National Institute on
Aging (NIA), three institutes that support significant amounts of
women's health research and have not yet received specific emergency
funding. It is clear that there are significant impacts on patients
with chronic conditions, as well as differences between how COVID-19
impacts women and men and the impact on older adults. We also must
study the effects that COVID-19 has on conditions that are unique to or
predominantly occur in women, such as pregnancy. Without additional
funding, NICHD, NIDDK, and NIA will not have the capacity to continue
adequately supporting existing research projects within their mission
while also undertaking new research on COVID-related complications and
comorbidities.
support diversity of the biomedical research workforce
Recent reports demonstrate that women in the workforce have been
disproportionately impacted during the COVID-19 pandemic. While women
comprise 47 percent of the US labor force, they accounted for 54
percent of initial COVID-related job losses and continue to make up 49
percent of losses.\1\ The recent May jobs report further emphasized
this point, with unemployment among women showing little
improvement.\2\ During the COVID-19 pandemic, women in academia are
balancing work with child care and virtual learning, financial issues,
and other issues at a disproportionate rate to men. OBGYNs have been
uniquely impacted during the pandemic since not only has their work not
slowed down during the pandemic, but has become more complicated. For
physician-researchers, there is little to no support currently in the
system that addresses their situation. This is exacerbated for women of
color, who are already underrepresented in obstetrics and gynecology.
We are concerned that the losses we have seen thus far represent just
the tip of the iceberg, and these inequities may result in loss of
women from the research workforce for many more years to come even as
the country continues to recover from the pandemic.
---------------------------------------------------------------------------
\1\ https://www.wsj.com/articles/how-the-coronavirus-crisis-
threatens-to-set-back-womens-careers-
11601438460#::text=Women%20have%20already%20lost%20a%20disproportionate%
20number%20of%20jobs.&text=While%20women%20are%2047%25%20of,%2C%20accord
ing%20
to%20McKinsey%20%26%20Co.
\2\ https://www.bls.gov/news.release/empsit.nr0.htm.
---------------------------------------------------------------------------
Therefore, the WFRC respectfully requests that you include the
following report language in the report that accompanies the FY 2022
LHHS appropriations bill under the NIH Office of the Director:
Diversity of the Biomedical Research Workforce.--The Committee is
concerned with the impact of COVID-19 on the diversity of the
biomedical research workforce, particularly women and women of
color early stage and midcareer investigators. The Committee
directs NIH to study the race and gender breakdown of the
impact of COVID on participation in the workforce by monitoring
the types of awards applied for and granted by gender and race
for two years. If the data demonstrate that less women are
applying for grants, then it is imperative that NIH take steps
to address this disparity. The Committee requests a status
update from NIH on this research in the FY 2023 Congressional
Justification as well as the steps being taken to maintain the
diversity of the research workforce.
support for the bircwh fellows program
Administered by the NIH Office of Research of Women's Health
(ORWH), the Building Interdisciplinary Research Careers in Women's
Health (BIRCWH) program is a mentored career-development program
designed to connect junior faculty, known as BIRCWH Scholars, to senior
faculty with shared interest in women's health and sex differences
research. There are currently 20 active BIRCWH programs across the
country--each one is a 2-year program, and costs approximately $170,000
per fellow per year. BIRCWH research areas include cardiovascular
disease, aging, cancer, neurosciences, musculoskeletal conditions,
autoimmunity, mental health, reproductive health, health disparities,
and infectious diseases/emerging infections & HIV/AIDS. Since its
creation in 2000, the BIRCWH program has trained over 700 fellows and
has an extremely strong track record of training successful women and
URiM Scholars and preparing them for independence.
Approximately 70 percent of BIRCWH fellows supported during 2000-
2018 received at least one successful R-level grant from the NIH and
many received private grants as well. To continue this important work,
more funding is necessary to support additional BIRCWH fellows at all
existing sites with a goal of increasing the diversity of the scholars,
sites, research areas supported by the program, and ultimately the
diversity of the biomedical research workforce.
Therefore, the WFRC respectfully requests that you include the
following report language in the report that accompanies the FY 2022
LHHS appropriations bill under the NIH Office of the Director:
BIRCWH Fellows Program.--The Committee allocates $3 million to
the ORWH's Building Interdisciplinary Research Careers in
Women's Health (BIRCWH) program to fund additional BIRCWH
fellows at all existing sites with a goal of increasing the
diversity of the scholars, sites, and research areas supported
by the program. These funds would support additional
researchers focused on women's health and sex differences,
which are priority research areas, as well as expand the
program's work in the reproductive sciences. The Committee
recognizes the effectiveness of the BIRCWH program, which is a
mentored career-development program designed to connect junior
faculty and senior faculty with shared interests.
conclusion
Thank you again for the opportunity to submit testimony to the
Committee as you begin your work on the FY 2022 appropriations bills.
We look forward to working with you to ensure that there is appropriate
funding for women's health research at the NIH, and to improve the
diversity of the biomedical workforce.
______
Prepared Statement of the Yale School of Public Health
To the Committee Members:
In my personal capacity, I am writing in support of a FY 2022
budget request for DHHS to develop a strategic plan and national
strategy for treatment and prevention of Herpes Simplex Virus (HSV)
Types 1 and 2. As you know, HSV is a chronic viral infection that
disproportionately affects women of color, LGBTQ populations, and
adolescents. HSV is well-known risk factor for HIV acquisition since it
disrupts and is a widely recognized driver of the HIV epidemic. As a
pediatrician, I wish to highlight the devastation that HSV causes
through neonatal herpes, often fatal to newborns or the cause of
overwhelming developmental abnormalities. Other neurodegenerative
diseases have been linked to HSV.
There is currently no centralized national strategy to address HSV,
it is not tracked or tested for, and the majority of spread is via
asymptomatic carriers unaware of their status. We can and should be
doing more to stop the spread and provide better treatment to the 1 in
3 Americans with this chronic condition.
I chaired a recent Committee for the National Academies of
Sciences, Engineering, and Medicine that produced a 2021 report for the
CDC entitled: Sexually Transmitted Infections: Advancing a Sexual
Health Paradigm. This report highlights the crisis of rising rates of
sexually transmitted infections in the United States. I hope that you
support the HSV Strategic Plan mandate for DHHS. Thank you.
Sincerely yours.
[This statement was submitted by Sten H. Vermund, Anna M.R. Lauder
Professor of Public Health, and Dean of the Yale School of Public
Health, and Professor in Pediatrics at the Yale School of Medicine.]
______