[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 2020
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U.S. Senate,
Subcommittee of the Committee on Appropriations,
Washington, DC.
[Clerk's note.--The subcommittee was unable to hold
hearings on departmental and nondepartmental witnesses. The
statements and letters of those submitting written testimony
are as follows:]
DEPARTMENTAL WITNESSES
Prepared Statement of the Corporation for Public Broadcasting
Chairman Blunt, Ranking Member Murray and distinguished members of
the subcommittee, thank you for allowing me to submit this testimony on
behalf of America's public media service-public television and public
radio-on-air, online and serving communities throughout our country.
The Corporation for Public Broadcasting (CPB) requests funding of $495
million for fiscal year 2022, $20 million in fiscal year 2020 for the
replacement of the public broadcasting interconnection system and other
technologies and services, and $30 million for the Department of
Education's Ready To Learn program.
Through this uniquely American public-private partnership, CPB
serves as the steward of the Federal appropriation, ensuring that 95
cents of every dollar we receive goes to support local stations and the
programs and services they offer to their communities. No more than
five cents of every dollar goes to overhead. Public media stations in
rural, small town and urban communities across the country use these
``first-in'' Federal dollars to raise, on average, six times that
amount from private funding. This indispensable investment provides for
the content and community services that address the diverse needs of
our viewers and listeners, serving Americans at every stage of their
lives.
Parents choose public media content and services to prepare their
children for school. They trust public media as a family-friendly, safe
environment for learning. This is just one reason why PBS Kids is the
number-one educational media brand for supporting children's learning
and development. Through the Department of Education's Ready to Learn
grant, CPB is helping deliver free, research-based educational content,
digital resources for parents and teachers, and safe, online learning
experiences for kids. What makes this grant program unique is public
television stations' community-based partnerships with Head Start
centers, daycare facilities, healthcare centers, faith-based
organizations and others to expand the impact of public media's content
and resources beyond the broadcast, especially in low-income and
underserved communities.
Today's workers are challenged by a rapidly changing economy,
requiring different skills for in-demand jobs. Public media is
addressing the workforce skills gap through CPB's American Graduate:
Getting To Work initiative. Public media stations are working with
local businesses, education and workforce-related organizations,
connecting potential job seekers with the resources and information
they need to pursue jobs and successful careers. CPB funding also makes
it possible for public television to operate the largest not-for-profit
GED program in the country and for many stations to provide job
training and certification courses.
At a time when people are feeling isolated from one another, from
our shared culture and from the institutions and organizations that
seek to support us, public media matters now more than ever. Through
nationwide community conversations, authentic, local storytelling, and
effective collaborations and partnerships, the nearly 1,500 locally
owned and operated public radio and television stations across the
country are playing an important role providing content and engagement
that fosters an environment of mutual respect and understanding.
For example, building the foundation for a stronger civil society,
CPB is a founding supporter of StoryCorps. StoryCorps, through their
One Small Step initiative, is bringing together people of diverse,
opposing views for thoughtful conversations in a safe and respectful
environment. These conversations are aired on public radio and archived
in the Library of Congress. Over the past 5 years, CPB's Veteran's
Coming Home initiative has worked to bridge the military-civilian
divide and honor those that serve. Through local storytelling events,
job fairs, and informational content that leads veterans to assistance,
stations are ensuring that the experiences and sacrifices of military
members and their families are heard at a time when fewer Americans are
serving. This year, a new CPB initiative will provide grants to
stations serving rural communities to magnify local stories and explore
what ``home'' means in terms of pride of place, commitment and
contribution to one's community, and how our connection to home shapes
what it means to be an American.
Because public media stations are locally owned and operated, they
are aware early on of local issues that often rise to the level of
national impact. Over the past several years, local stations across the
country have witnessed the impact of the opioid epidemic. In response,
stations in all 50 States have produced thousands of hours of local
broadcast and online coverage, hosted hundreds of town halls and other
events, and collaborated with experts to direct those affected to the
support and resources they need to fight addiction. Nationally,
programs such as FRONTLINE, PBS NewsHour and NOVA have covered the
opioid issue in depth. In States hardest hit by opioid addiction, CPB-
supported journalism collaborations have produced award-winning
reporting on the crisis. These stations' daily reporting, which is also
published and enhanced online with expanded resources, allows listeners
and viewers to engage directly with the support tools they seek.
Public media is owned by the American public. CPB's commitment to
diversity and inclusion ensures that Americans of all backgrounds are
represented in our content and the creation of our stories. From
educational children's content like Molly of Denali, featuring the
first Alaska Native lead character in a children's series, that teaches
scientific inquiry through adventures in rural, native Alaska; to CPB-
supported regional journalism collaborations that elevate local stories
and strengthen newsroom and editorial capacity; to documentaries that
tell the untold or overlooked history of our diverse society, CPB is
living up to its mission to address the needs of unserved and
underserved audiences.
Public media stations are committed to serving the needs of their
local communities. Their ``beyond the broadcast'' services are an
essential part of that service. Increasingly, State and local public
safety officials, schools, education, community and business leaders
are seeking to partner with public media. Stations are the backbone of
the national Emergency Alert System (EAS), transmitting life-saving
warnings from State and local officials about severe weather,
evacuation routes and AMBER alerts. Through data-casting capabilities,
public television stations work with first responders to deliver
instant, secure, encrypted IP data and communications to targeted
emergency responders while continuing regular broadcast service.
Today's media environment is marked by disruption and changing
demand. Media consumption habits, audience expectations, and media
technologies continue to evolve rapidly. Over the past years, CPB has
anticipated the changes in the media landscape and responded by
investing in shared technology that reduces redundant costs across the
system. CPB's investments enable stations to engage more effectively
with audiences across the rapidly growing range of digital channels--
from websites to apps, new video platforms to smart speakers. Public
media has a strong foundation in creating engaging and enriching
content which is paired with a commitment to innovation--as content
creators, storytellers, and connectors--embracing constantly changing
technologies. With additional support, CPB would invest in new
technologies and infrastructure that benefit the entire system, so that
stations can strategically focus their limited resources on creating
additional local content and services. This investment combination will
increase our ability to meet audiences where they choose and will
enhance their public media experience.
Interconnection Infrastructure: Interconnection is the backbone of
the public media system, delivering content every day from public media
producers to public television and radio stations in communities
throughout the country. Without it, there is no nationwide public media
service. Recognizing its importance, Congress has always funded public
media's interconnection system since fiscal year 1991 by providing a
separate, periodic appropriation for interconnection. CPB appreciates
Congress' support of moving the interconnection infrastructure to an
annual, ongoing funding cycle. This allows CPB the flexibility to
contract for incremental upgrades as innovations in technology are
realized and costs decrease. These efficiencies and technological
improvements will advance the system and benefit the American people.
CPB's fiscal year 2022 request of $495 million and fiscal year 2020
requests of $20 million and $30 million for interconnection and Ready
To Learn, respectively, provides essential support to stations--
particularly those serving rural, minority and other underserved
communities--and enables innovation and technological advances. While
private donations and existing funding sources help defray costs for
the acclaimed programs of public television and radio, the Federal
investment is critical to sustaining the operations of public media
stations and keeps their services commercial free and available to all
Americans free of charge.
We know that Americans value their local public media stations.
With your support, CPB will continue to serve as a trusted steward of
the Federal appropriation and invest these taxpayer dollars in ways
that strengthen the health of our civil society. Mr. Chairman and
members of the subcommittee, thank you for allowing me, on behalf of
America's public media, to submit this testimony. I appreciate your
consideration of our funding request.
[This statement was submitted by Patricia de Stacy Harrison,
President and CEO, Corporation for Public Broadcasting.]
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Prepared Statement of the Railroad Retirement Board
Mr. Chairman and Members of the Committee:
The President's fiscal year 2020 proposed budget for the Railroad
Retirement Board (RRB) is $116.225 million. The RRB is requesting
$137.216 million. Appropriations for RRB operations are derived from
the railroad retirement trust fund system and not the general fund.
Appropriations language authorizes the RRB to access available funding
from the trust funds to administer comprehensive retirement/survivor
and unemployment/sickness insurance benefit programs for railroad
workers and their families under the Railroad Retirement (RRA) and
Railroad Unemployment Insurance (RUIA) Acts. The RRB also administers
certain benefit payments and Medicare coverage for railroad workers
under the Social Security Act.
Last year, the RRB paid $13.1 billion, net of recoveries and
offsetting collections, in retirement/survivor benefits to about
540,000 beneficiaries, including $1.8 billion in benefits paid to about
124,000 beneficiaries on behalf of the Social Security Administration.
Further, the RRB paid $100.2 million in unemployment-sickness benefits
net of recoveries and offsetting collections to about 25,000 railroad
workers.
The railroad employer and employee contributions are held in trust
funds to pay railroad benefits and support RRB operations. Enacted
appropriations language authorizes the RRB to access the funds
available in the railroad retirement trust fund system in order to
finance operations. The Association of American Railroads and the Rail
Labor Division of the Transportation Trades Department, American
Federation of Labor and Congress of Industrial Organizations (AFL-CIO)
continue to support increased appropriations to address the urgent
staffing needs and ongoing information technology modernization
activities.
president's proposed funding for agency administration
The RRB's risk of mission failure is increasing substantially due
to insufficient staffing levels and antiquated IT systems. The
President's proposed budget would provide $116.225 million for agency
operations, to include IT initiatives, and support 744 full-time
equivalents (FTEs). The RRB requests an additional $20.991 million
above the President's proposed $116.225 million for a total of $137.216
million to be derived from the railroad retirement trust fund system
(not the general fund). Of the additional $20.991 million, $11.854
supports increased staffing for core programmatic activities and $9.137
million for continued implementation of the RRB's IT modernization
program. The remainder of this testimony will focus on these critical
priorities with a few additional topics in conclusion.
critical priority: agency staffing
For fiscal year 2020, the President's proposed amount of $116.225
million would support 744 FTEs, which is 106 less than the minimum, 850
FTEs, needed to sustain mission critical operations. From 1993 through
2018, the RRB has reduced staffing levels by more than half and by
fiscal year 2020, 34 percent of our current workforce will be eligible
to retire.
Operating with less than 850 employees has and will continue to
significantly decrease available customer service and office hours in
the RRB's 53 field offices, resulting in unpredictable temporary office
closures. As a result, railroad beneficiaries will continue to
encounter significant delays in receiving assistance for benefits and
counseling. Further, the growing backlog in retirement, survivor, and
disability casework will continue to increase because of insufficient
staffing. This will have a direct impact on payment of benefits.
Therefore, for fiscal year 2020, the RRB requests an additional $20.991
million, $11.854 million above the President's proposed amount of
$116.225 million. Of the $20.991 million, $11.854 million would fund
increased staffing levels to the 850 FTEs that are necessary until
modernized technology can sustain organization performance at lower
staffing levels in the future.
critical priority: information technology (it)
We are grateful for the support and $20 million provided thus far
for the RRB's IT modernization program; $10 million provided under
Public Law 115-245, Department of Defense, and Labor, Health and Human
Services, and Education Appropriations Act, 2019 and $10 million
provided under Public Law 115-141, Consolidated Appropriations Act,
2018. As a result of these appropriations, the RRB has initiated an
aggressive IT modernization program to transition the agency from its
antiquated IT systems that do not meet current Federal Information
Security Modernization Act (FISMA) mandates to modern benefit
calculation and payment processing capabilities made possible by
leveraging best value shared services, cloud services, and self-service
digital solutions for our customers. These funds have allowed the RRB
to contract for re-platforming services that will eliminate the risk of
aging mainframe hardware by transitioning the agency to a cloud based
solution. Additionally, RRB has made progress on the Legacy Systems
Modernization Services and the Financial Management Integrated System
Upgrade projects. RRB continues to work with GSA on contracts necessary
to implement the mandated Enterprise Infrastructure Solutions.
Additional details on the progress of IT modernization are located in
the quarterly progress reports submitted to your office.
For fiscal year 2020, the RRB requests an additional $20.991
million above the President's proposed amount of $116.225 million. Of
the $20.991 million in additional funds requested, $9.137 million would
be designated for IT initiatives to allow continued progress on the
RRB's ongoing critical modernization efforts. The additional investment
will also facilitate compliance with cybersecurity and privacy
mandates; improve and expand our data analytical capabilities to reduce
the risk of fraud through stronger program integrity measures; and
ultimately create a more effective and efficient organization capable
of achieving the mission with fewer people.
legislative proposals
The RRB's budget request includes four legislative proposals. The
first proposal seeks to eliminate the competitive civil service
requirement in Section 7(b) (9) of the Railroad Retirement Act, so that
the RRB could use the various hiring authorities available to other
Federal agencies. The second would allow the RRB to utilize student and
recent graduate hiring authorities available to other Federal agencies.
The third would amend the RRA and the RUIA to include a felony charge
for individuals committing fraud against the agency. The last would
amend the Social Security Act to provide access for the RRB to the
National Directory of New Hires (NDNH) that would support the RRB's
program integrity efforts to prevent improper payments.
financial status of the trust funds
Railroad Retirement Accounts.--The RRB continues to coordinate its
activities with the National Railroad Retirement Investment Trust
(Trust), which was established by the Railroad Retirement and
Survivors' Improvement Act of 2001 (RRSIA) to manage and invest
railroad retirement assets for the payment of benefits. Pursuant to the
RRSIA, the RRB transferred a total of $21.276 billion to the Trust. All
of these transfers were made in fiscal years 2002 through 2004. The
Trust has invested the transferred funds, and the results of these
investments are reported to the RRB and posted periodically on the
RRB's website. The net asset value of Trust-managed assets on September
30, 2018, was approximately $26.6 billion, an increase of almost $100
million from the previous year. Through February 1, 2019, the Trust had
transferred approximately $23.684 billion to the RRB for payment of
railroad retirement benefits.
The RRB's latest report required by the Railroad Retirement Act of
1974 and Railroad Retirement Solvency Act of 1983 was released in June
2018. The overall conclusion was, barring a sudden, unanticipated,
large drop in railroad employment or substantial investment losses, the
railroad retirement system will experience no cash flow problems during
the next 29 years. The report recommended no change in the rate of tax
imposed on employers and employees. The tax adjustment mechanism would
automatically increase or decrease tax rates in response to changes in
fund balance. Even under a pessimistic employment assumption, this
mechanism is expected to prevent cash flow problems for at least 29
years.
Railroad Unemployment Insurance Account.--The RRB's latest annual
report required by Section 7105 of the Technical and Miscellaneous
Revenue Act of 1988 was issued in June 2018. The report indicated that
even as maximum daily benefit rates are projected to rise approximately
51 percent (from $72 to $109) from 2017 to 2028, experience-based
contribution rates are expected to keep the unemployment insurance
system solvent. Unemployment levels are the single most significant
factor affecting the financial status of the railroad unemployment
insurance system. However, the system's experience-rating provisions,
which adjust contribution rates for changing benefit levels, and its
surcharge trigger for maintaining a minimum balance, help to ensure
financial stability in the event of adverse economic conditions. No
financing changes were recommended at this time by the report.
Thank you for your consideration of our budget request. We will be
happy to provide further information in response to any questions you
may have.
[This statement was submitted by Erhard R. Chorle, Chairman, John
Bragg, Labor Member, and Thomas R. Jayne, Management Member, Railroad
Retirement Board.]
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NONDEPARTMENTAL WITNESSES
Prepared Statement of the Academy for Radiology &
Biomedical Imaging Research
Mr. Chairman and Members of the Subcommittee, my name is Dr.
Mitchell Schnall, and I am privileged to serve as Vice President of the
Academy for Radiology & Biomedical Imaging Research (``the Academy'').
I am testifying today to thank you for your dedicated support of
medical imaging, and to request your support for raising the funding
for the National Institutes of Health to no less than $41.6 billion and
increasing the funding for the National Institute of Biomedical Imaging
and Bioengineering (NIBIB) by at least $25 million.
In my ``day job'' I am Eugene P. Pendergrass Professor and Chair of
the Department of Radiology at the Perelman School of Medicine at the
University of Pennsylvania, Philadelphia, PA. I am also a member of the
American Society of Clinical Investigation and the Association of
American Physicians. I have worked throughout my career on the
interface between basic imaging science and clinical medicine. My work
has led to fundamental changes in imaging approaches to breast and
prostate cancer, as well to emerging technologies such as optical
imaging.
On behalf of the Academy, I would like to begin by thanking you for
your generous support for the National Institutes of Health in the
fiscal year 2019 LHHS appropriations bill. This increase in funding
contributes to the important work of improving our biomedical research
infrastructure while also ensuring that the United States remains the
leader in medical innovation and technology.
As this subcommittee knows well, funding for NIH is spread
throughout the country. Approximately 84 percent of the amount
appropriated is used for peer-reviewed extramural grants to researchers
at universities, hospitals, and institutes in all 50 States. Another 9
percent funds very high-end research and patient care on the NIH
campus. Only about 7 percent of funding is used for administrative
purposes, maximizing the return on the investment. Nowhere is the
return on investment and impact on healthcare diagnosis and treatment
more significant than in the growing field of biomedical imaging and
bioengineering.
Our requests of this Subcommittee are critically important to the
physical and economic health of the Nation, and I would like to State
them clearly here:
--Please fund the NIH at no less than $41.6 billion for fiscal year
2020.
--Please increase NIBIB funding by no less than $25 million for
fiscal year 2020.
Mr. Chairman, medical imaging plays a unique role in healthcare,
both as an instrumental part of the medical care delivery system and as
a catalyst for innovation and technological advancement in service of
patient care. Imaging performs central and irreplaceable roles in early
disease detection, diagnosis, treatment planning and monitoring.
Precise and personalized care and treatment plans are often developed
based on decisions made through imaging analysis and review. The
Subcommittee's investment in NIH broadly, and in NIBIB in particular,
helps make this possible. NIBIB's imaging and bioengineering research
and development create the vital methodology and tools utilized in so
many areas of biomedical research by other institutes, let alone in
America's healthcare delivery system. Imaging research is a significant
component of the work of many institutes of the NIH, including the
National Cancer Institute, National Institute of Diabetes, Digestive
and Kidney Diseases, and the National Institute of Neurological
Disorders and Stroke, among others. NIBIB research itself has led to an
impressive number of approved patents. In a study covering the 14-year
period from 2000 to 2013, Battelle et al. found that for every $100
million of research funding, NIBIB generated 25 patents and more than
$575 million in resulting economic activity and growth.
For nearly every patient--nearly every constituent--who receives a
cancer diagnosis, suffers a head injury, or experiences any of
thousands of other medical issues, or who cares for family members
experiencing such difficulties, the health benefits of imaging and
bioengineering research are profoundly felt. Few medical conditions do
not already benefit from any of the wide range of clinical imaging
modalities, from x-rays to MRI, CT, PET, fluoroscopy, angiography, and
ultrasound. Furthermore, scientific discoveries and technological
innovations are rapidly expanding the power of biomedical imaging and
bioengineering to improve medical care. In the area of cancer, for
example, emerging techniques for molecular imaging will play a key role
in realizing the dream of molecularly-targeted treatment, as, unlike
biopsies, they can give a non-invasive picture of the biological
heterogeneity of cancer within and across all tumors in a patient.
Progress is also accelerating in the use of computer tools, including
artificial intelligence and machine learning, to analyze both
anatomical and molecular images and identify mathematically defined
features, not perceptible to the human eye, which can predict the
presence of cancer, its genetic profile, and how well it is likely to
respond to specific treatments. Furthermore, the use of increasingly
advanced imaging tools to guide medical interventions is allowing more
precise, less invasive procedures, in some cases with immediate
assessment of efficacy to enable necessary adjustments before a
procedure is concluded.
The Academy is involved in a broad effort to help maximize the
efficiency with which medical imaging is applied in research and
patient care. Since 2017, when the Interagency Working Group on Medical
Imaging (IWGMI) within the Office of Science Technology Policy (OSTP)
in the White House released a report detailing a ``road map'' for
medical imaging, the Academy has focused on the report's four key
objectives for advancing ``high-value'' imaging:
--Standardizing image acquisition and storage
--Applying advanced computation and machine learning to medical
imaging
--Accelerating the development and translation of new, high-value
imaging techniques
--Promoting best practices in medical imaging
To help achieve these objectives, the Academy is working closely
with allies across academia, government, and industry to identify and
pursue specific, effective steps to implement the building of the
Diagnostic Cockpit (DxCP) of the future--an entity that will integrate
advanced imaging and other diagnostic and bioengineering tools to
improve diagnosis and thereby further enhance the precision and
efficiency of healthcare delivery. The Academy has convened leaders in
biomedical imaging and bioengineering from academia, government, and
industry to work collaboratively on this project. The DxCP is a vision
for today and for the future that will be made possible by a consistent
and robust investment in biomedical imaging research. The sooner we
invest, the sooner your constituents benefit.
Mr. Chairman, innovation is what keeps America healthy--both
physically and economically--and the NIH is a major contributor to our
strength. Since its creation, NIBIB has proven itself to have a
significant impact by creating the imaging and bioengineering tools
that improve the healthcare of Americans and contribute to our Nation's
economic vitality and global leadership.
Thank you again for the opportunity to present this testimony to
you on behalf of the Academy for Radiology and Biomedical Imaging
Research. The Academy welcomes the opportunity to work with Congress to
ensure that the American people benefit from their investment in
research and have access to the best technology to address their
imaging needs.
[This statement was submitted by Mitchell D. Schnall, M.D., Ph.D.,
The Academy for Radiology & Biomedical Imaging Research.]
______
Prepared Statement of AcademyHealth
AcademyHealth is pleased to offer this testimony regarding funding
for Federal agencies that support health services research and health
data, including the Agency for Healthcare Research and Quality (AHRQ).
AcademyHealth works to improve health and the performance of the health
system by supporting the production and use of evidence to inform
policy and practice. We represent the interests of more than 4,000
health services researchers, policy analysts, and practitioners that
produce and use health services research to improve our Nation's health
and the performance of the healthcare and public health systems. For
fiscal year 2020, AcademyHealth recommends a funding level of $460
million in budget authority for AHRQ, consistent with the agency's
fiscal year 2010 appropriated budget, adjusted for inflation.
Health services research is our Nation's R&D enterprise for health
improvement. Just as medical research discovers cures for disease,
health services research discovers cures for the health system (see
Figure 1). This research diagnoses problems in healthcare and public
health delivery and identifies solutions to improve outcomes for more
people, at greater value. And while biomedical and clinical research
discoveries can take years and even decades to reach patients,
discoveries from health services research can be used now by patients,
healthcare providers, public health professionals, hospitals,
employers, and public and private payers to improve care today.
Figure 1: The Health Research Continuum
These components of the health research continuum work in concert,
and each plays an essential role--any one type of research on its own
cannot effectively or appreciably improve health. Take heart disease as
one example . . .
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Basic research Clinical research Population-based research Health services research
discovered the determined which treatments identified strategies to determined how to best
contributions of elevated were safe and effective to reduce the risks of heart deploy these discoveries
blood pressure, elevated treat hypertension, disease in communities to achieve the best health
cholesterol, and tobacco hypercholesterolemia, through non-medical outcomes. This research
use to heart disease. tobacco addiction, and to interventions, such as helped identify who had
prevent and treat heart reduction of trans fats in the least access, what
disease, in general food and tobacco control barriers existed, and how
measures to reduce smoking to address them. This
research also led to the
development of quality
measures that are now used
to report on the quality
of cardiac care
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Source: AHRQ: 15 Years of Transforming Care and Improving Health, AcademyHealth, Jan. 2014. Available at: http://
academyhealth.org/files/AHRQReport2014.pdf.
Put plainly, health services research helps Americans get their
money's worth when it comes to healthcare. We need more of it, not
less. Despite the positive impact health services research has had on
the U.S. healthcare system, and the potential for future improvements
in quality and value, the United States spent less than one cent of
every healthcare dollar on health services research.
As the largest purchaser of healthcare--more than $1 trillion per
year and rising--the Federal Government has an enormous stake in
spending each health dollar wisely. Patients deserve healthcare that
works for them, and taxpayers deserve smart spending. Indeed, in poll
after poll, healthcare costs are consistently top of mind for
Americans. As the lead Federal agency for health services research,
AHRQ is uniquely positioned to generate evidence to ensure Americans
get the best care at the best value.
The vast majority of federally funded research focuses on
individual diseases, organ systems, cellular, or chemical processes.
AHRQ is the only Federal agency that funds research at universities and
other research institutions throughout the Nation on the primary care
and health systems serving real patients, those who have complex
comorbidities, and the interactions and intersections of healthcare
providers. AHRQ also provides the data needed to monitor the healthcare
landscape nationally and within States, speeds new medical findings to
healthcare providers and patients, and provides them with the tools and
training they need to use those findings every day to improve the
quality and safety of patient care.
An example of AHRQ's successful work includes efforts to reduce
hospital acquired conditions. New, preliminary data from AHRQ finds
that by implementing transformational, AHRQ-funded research, the
Centers for Medicare and Medicaid Services (CMS) has reduced hospital-
acquired conditions, and prevented an estimated 20,500 hospital deaths
and saved $7.7 billion in healthcare costs from 2014 to 2017.
In addition, AHRQ funded research grants are finding ways to ensure
rural primary care practices are equipped to respond to the opioid
crisis. An explosion in the incidence of opioid addiction and
overdoses, particularly in rural areas of the country, has elevated
this issue to crisis-level in the United States. Primary care practices
are often the first line of defense against this and other substance
use disorders.
AcademyHealth joins the Friends of AHRQ--an alliance of 150 health
professional, research, consumer, and employer organizations that
support the agency--in recommending $460 million in budget authority
for AHRQ in fiscal year 2020, which is consistent with the fiscal year
2010 level adjusted for inflation. This funding level would allow AHRQ
to rebuild portfolios terminated as a result of years of past cuts and
expand its research and training portfolio to address our Nation's
pressing and evolving healthcare challenges. Additionally, with a
quarter of the agency's program level budget supported by the Patient-
Centered Outcomes Research Institute and its associated trust fund, a
strong investment in the AHRQ appropriation will be essential to
sustain the agency's core activities as PCORI undergoes reauthorization
this year. AcademyHealth has joined other groups to support the
reauthorization of PCORI, but if those efforts fail, the loss of the
trust fund would result in a 25 percent cut to AHRQ's budget that would
cripple the agency's ability to achieve its important mission.
AcademyHealth is mindful that AHRQ and other domestic programs face
a scheduled, statutory $55 billion cut--11 percent across the board--if
lawmakers are unable to enact legislation to raise the discretionary
spending caps in fiscal year 2020. Our proposed funding recommendation
for AHRQ can only be achieved if such a bipartisan budget deal is
reached. We have joined nearly 1,000 organizations across the research,
public health, education, housing, natural resources, and other sectors
in calling upon Congress and the White House to raise the caps before
the end of the fiscal year, and we have endorsed the Investing in the
People Act (HR 2021).
The accomplishments of the field of health services research would
not be possible without the leadership and support of this
subcommittee, and AcademyHealth recognizes the importance of investing
Federal funds strategically. We strongly believe that AHRQ more than
earns a place among your appropriations priorities, and urge you to
provide the agency $460 million in budget authority in fiscal year
2020. Doing so would signal your continued commitment not just to
produce discoveries for the future, but to produce science that
translates medical progress into better care for patients today.
Thank you for considering our recommendation. For more information,
including a copy of our report on AHRQ's contributions to improved
health and healthcare over the years, please contact Dr. Lisa Simpson,
President and CEO of AcademyHealth, at [email protected].
[This statement was submitted by Dr. Lisa Simpson, President & CEO,
AcademyHealth.]
______
Prepared Statement of the Accelerate Cure/Treatments for Alzheimer's
Disease
Dear Chairmen Shelby and Cole and Ranking Members Leahy and Murray,
Accelerate Cure/Treatments for Alzheimer's Disease (ACT-AD) is
comprised of more than 50 national organizations representing patients,
caregivers, researchers, health professionals, and other health
advocates. Our mission is to support efforts to expedite the
development, review, and approval of transformational therapies for
Alzheimer's disease. We appreciate the opportunity to submit testimony
on the fiscal year 2020 Labor, Health and Human Services, Education,
and Related Agencies appropriations process.
Alzheimer's disease is devastating both emotionally and financially
for the estimated 5.8 million Americans living with the disease and
their families. We would like to thank you for your strong leadership
and support of biomedical research at the National Institutes of Health
(NIH) and the National Institute on Aging (NIA) in fiscal year 2019.
The research funded by your respective committee's has helped us
understand much more about this complicated disease.
As you prepare the fiscal year 2020 appropriations legislation, we
ask for sufficient Federal resources be dedicated to sustaining and
enhancing biomedical research at the NIA, and across the NIH.
Considering the range of promising scientific opportunities at the NIH
and the potential of this research to reduce human suffering and
economic burden of many age-associated diseases, the ACT-AD supports
the AD Hoc Group for Medical Research's recommendation to appropriate
at least $41.6 billion in fiscal year 2020 for the NIH, including funds
provided through the 21st Century Cures Act for targeted initiatives.
In addition, we request targeted funding increases for aging and
Alzheimer's disease and related dementia (ADRD) research to sustain the
promising work of the NIH in these domains. Specifically, ACT-AD
requests a $500 million increase in the fiscal year 2020 NIH budget to
support aging research, including biomedical, behavioral, and social
science research efforts. Additionally, we request a minimum increase
of $350 million in funding for ADRD research. These increases are
necessary to ensure the NIH and NIA have the resources they need to
address dementia and many other age-related chronic diseases.
Please consider the ACT-AD coalition a resource to you and your
staff. If you have questions or more additional information, please
contact Ryne Carney at [email protected]. Additionally, we are
located at 1700 K Street, NW, Suite 740, Washington, DC 20006.
Sincerely.
[This statement was submitted by Missy Jenkins, Executive Director,
Accelerate Cure/Treatments for Alzheimer's Disease.]
______
Prepared Statement of the Ad Hoc Group for Medical Research
The Ad Hoc Group for Medical Research is a coalition of more than
300 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 $41.6
billion for NIH in fiscal year 2020.
As a result of the strong, bipartisan vision of Senate and House
Labor-HHS-Education Appropriations Subcommittees over the last 4 years,
Congress has helped the agency regain some of the ground lost after
years of effectively flat budgets. This renewed investment in NIH has
advanced discovery toward promising therapies and diagnostics,
reenergized existing and aspiring scientists nationwide, and restored
hope for patients and their families.
For fiscal year 2020, more than 315 stakeholder organizations
supported the Ad Hoc Group recommendation of at least $41.6 billion for
the NIH, a $2.5 billion increase over the NIH's program level funding
in fiscal year 2019. 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 in addition to
special initiatives. It also would ensure that funding from the
Innovation Account established in the 21st Century Cures Act would
supplement the agency's base budget, as intended, through dedicated
funding for specific programs. We are appreciative that the fiscal year
2020 spending bill approved by the House Appropriations Committee would
continue the sustained funding momentum of the last 4 years through an
increase in NIH's base budget, and meaningfully bolster funding for all
Institutes and Centers across the agency. We believe that supplementing
the targeted funding with substantial, across the board increases will
yield the greatest return on investment.
In addition, we recognize that the impractical budget caps imposed
by the Budget Control Act of 2011 undermine necessary investment in the
full range of critical Federal priorities. The Ad Hoc Group is among
the nearly 850 organizations and 15 research-focused coalitions urging
a bipartisan budget deal to increase the caps for nondefense
discretionary spending and joins the Coalition for Health Funding,
Coalition on Human Needs, Committee for Education Funding, and Campaign
to Invest in America's Workforce in advocating a significant increase
in the subcommittee's 302(b) allocation in fiscal year 2020.
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. As the Subcommittee has recognized, to remain a
global leader in accelerating the development of life-changing cures,
pioneering treatments, and innovative prevention strategies, it is
essential that Congress sustain robust increases in the NIH budget.
NIH: A Partnership to Save Lives and Provide Hope. The partnership
between NIH and America's scientists, medical schools, teaching
hospitals, universities, and research institutions is a unique and
highly-productive relationship, leveraging the full strength of our
Nation's research enterprise to translate this knowledge into the next
generation of diagnostics, therapeutics, and cures. More than 80
percent of the NIH's budget is competitively awarded through nearly
50,000 research and training grants to more than 300,000 researchers at
over 2,500 universities and research institutions located in every
State and Washington, D.C. The Federal Government has an essential and
irreplaceable role in supporting medical research. No other public,
corporate or charitable entity is willing or able to provide the broad
and sustained funding for the cutting-edge basic research necessary to
yield new innovations and technologies of the future.
NIH has supported biomedical research to enhance health, lengthen
life, and reduce illness and disability for more than 100 years. The
following are a few of the many examples of how NIH research has
contributed to improvements in the Nation's health.
--Breakthroughs in the treatment of depression came in early 2019
with FDA approval of two new drugs--one for treatment-resistant
depression and the first ever treatment for postpartum
depression. These approvals follow nearly three decades of
research funded by the NIH to identify novel mechanisms of drug
action.
--The NIH has supported research on sickle cell disease (SCD) since
1948, and the disease currently affects about 100,000
Americans. Today, an ongoing multi-center clinical trial is
using gene therapy to replace the defective gene that causes
SCD, beta globin, in patient's blood cells and effectively
curing them of disease.
--In 2007, induced pluripotent stem cells (iPSCs) were discovered
when adult cells were re-engineered into early non-
differentiated versions of themselves. Today, researchers have
used iPSCs to successfully treat a major cause of blindness--
age-related macular degeneration--in animal models and are
awaiting FDA approval to begin the first iPSC clinical trial in
the U.S.
--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.
--The widespread use of the measles vaccine since its development in
the 1960s led to a 99.9 percent decrease in annual cases of the
disease compared to pre-vaccine levels, officially eliminating
the disease in the U.S. in 2000. Every $1 spent on routine
childhood vaccinations, including against measles, is estimated
to save $5 in direct costs, and $11 in broader costs to
society.
--Today, treatments can suppress HIV to undetectable levels, and a
20-year-old HIV-positive adult living in the U.S. who receives
these treatments is expected to live into his or her early 70s,
nearly as long as someone without HIV.
--NIH funding supported research that contributed to all of the 210
new drugs approved by the FDA between 2010 and 2016.
--The death rate for all cancers combined has been declining since
the early 1990s for adults and since the 1970s for children.
Overall cancer death rates have dropped by nearly 27 percent
with more than 2.6 million deaths avoided in total between 1991
and 2016. Research in cancer immunotherapy has led to the
development of several new methods of treating cancer by
restoring or enhancing the immune system's ability to fight the
disease.
--Deaths from heart disease fell 68 percent from 1969 to 2015,
through research advances supported in large part by NIH. The
Framingham Heart Study and other NIH-supported research have
identified risk factors for heart disease, such as cholesterol,
smoking, and high blood pressure. This work has led to new
strategies for preventing heart disease.
For patients and their families, NIH is the ``National Institutes of
Hope.''
Sustaining Scientific Momentum Requires Sustained Funding. The
leadership and staff at NIH and its Institutes and Centers have engaged
the broader community to identify emerging research opportunities and
urgent health needs and to prioritize precious Federal dollars to areas
demonstrating the greatest promise. Sustained robust increases in NIH
funding are needed if we are to continue to take full advantage of
these opportunities to accelerate the development of pioneering
treatments and innovative prevention strategies.
One long-lasting potential impact of investments in NIH is on the
next generation of scientists. The Federal commitment to NIH sends a
strong signal to these aspiring researchers about the stability of a
long-term career in medical research. Of particular interest is
maintaining a cadre of clinician-scientists to facilitate translation
of basic research to human medicine. Even with the recent investment in
NIH, nearly 4 of every 5 research ideas that are proposed to NIH every
year cannot be funded. Additional funding is needed if we are to
strengthen our Nation's research capacity, ensure a medical research
workforce that reflects the racial and gender diversity of our
citizenry, and inspire a passion for science in current and future
generations of researchers.
NIH is Critical to U.S. Competitiveness. Our country still has the
most robust medical research capacity in the world; however, other
countries have significantly increased their investment in biomedical
science, which leaves us vulnerable to the risk that talented medical
researchers from all over the world may return to better opportunities
in their home countries. We cannot afford to lose that intellectual
capacity, much less the jobs and industries fueled by medical research.
The U.S. has been the global leader in medical research because of
Congress's bipartisan recognition of NIH's critical role. To continue
our dominance, we must reaffirm this commitment to provide NIH the
funds needed to maintain our competitive edge.
NIH: An Answer to Challenging Times. Research supported by NIH
drives local and national economic activity, creating skilled, high-
paying jobs and fostering new products and industries, and catalyzes
increases in private sector investment. A $1 increase in public basic
research stimulates an additional $8.38 investment from the private
sector after 8 years. A $1 increase in public clinical research
stimulates an additional $2.35 in private sector investments after 3
years. According to a United for Medical Research report, in fiscal
year 2018, NIH-funded research supported more than 433,000 jobs across
the U.S. and generated nearly $74 billion in new economic activity.
The Ad Hoc Group's members recognize the tremendous challenges
facing our Nation and acknowledge the difficult decisions that must be
made to restore our country's fiscal health. Strengthening our
commitment to medical research, through robust funding of the NIH, is a
critical element in ensuring the health and well-being of the American
people and our economy. Therefore, for fiscal year 2020, the Ad Hoc
Group for Medical Research recommends that NIH receive at least a $41.6
billion to continue the momentum in our Nation's investment in medical
research.
______
Prepared Statement of Advance CTE
Advance CTE is the longest-standing national non-profit that
represents State Directors and State leaders responsible for secondary,
postsecondary and adult Career Technical Education (CTE) across all 50
States and U.S. territories. Advance CTE's mission is to support
visionary State leadership, cultivate best practices, and speak with a
collective voice to advance high-quality CTE policies, programs and
pathways that ensure career success for each learner. On behalf of our
members, Advance CTE is pleased to submit written testimony about the
Federal investment in CTE State Grants (authorized under Title I of the
Strengthening Career and Technical Education for the 21st Century Act
(Perkins V)) for fiscal year 2020 (fiscal year 2020) that is
administered through the U.S. Department of Education. Building on the
increases in fiscal year 2018 and fiscal year 2019, Congress should
double the Federal investment in CTE State Grants from the fiscal year
2018 level by fiscal year 2024. In order to fully support the
implementation of Perkins V and the 12.1 million learners it serves
across the Nation, in fiscal year 2020, Congress should make a strong
down payment toward this goal by providing $1.52 billion.\1\
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\1\ Refers to Program Year 2016-17. Source: https://perkins.ed.gov/
pims/DataExplorer/CTEParticipant.
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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.\2\ 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. For example, students involved in
CTE are far less likely to drop out of high school than other students,
a difference estimated to save the economy $168 billion each year.\3\
The results for adult learners are also impressive: 86 percent of
adults concentrating in CTE either continued their education or were
employed within 6 months of completing their program.\4\ In fact, 90
percent of Americans agree that apprenticeships and skills training
programs prepare students for a good standard of living.\5\
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\2\ https://careertech.org/excellence-action-award.
\3\ https://files.eric.ed.gov/fulltext/EJ943149.pdf.
\4\ Includes only States that report data on adult CTE learners to
the U.S. Department of
Education. Retrieved from https://perkins.ed.gov/pims/DataExplorer/
Performance.
\5\ https://www.newamerica.org/education-policy/reports/varying-
degrees-2018/executive-
summary/.
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CTE programs can serve even more learners and employers--but only
if they receive more resources. Nearly 60 percent of companies report
having difficulty filling job openings because of a lack of qualified
applicants, which can cost a company more than $800,000 each year in
lost productivity and recruitment.\6\ In addition, there are now more
open jobs in the U.S. than there are unemployed Americans. It's clear
that the 21st century economy is creating skilled careers faster than
our schools, colleges, and CTE programs can prepare learners for these
opportunities. And there's widespread support for CTE: 94 percent of
parents approve of expanding access to CTE.\7\ 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.\8\ As the chart below demonstrates, between fiscal year 2004
and fiscal year 2017, funding for CTE State Grants declined by over $77
million dollars, the equivalent of $427 million inflation-adjusted
dollars (i.e., 28 percent in inflation-adjusted dollars).
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\6\ http://press.careerbuilder.com/2017-04-13-The-Skills-Gap-is-
Costing-Companies-Nearly-
1-Million-Annually-According-to-New-CareerBuilder-Survey.
\7\ https://www.aft.org/sites/default/files/
parentpoll2017_memo.pdf.
\8\ https://nces.ed.gov/pubs2018/2018028.pdf.
Taking a longer view, before fiscal year 2018, the investment in
CTE State Grants had been relatively flat since 1991, and without being
tied to inflation, the program's buying power had fallen by
approximately $933 million in inflation-adjusted dollars since 1991--a
45 percent reduction over a quarter century.\9\
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\9\ Calculated using the Bureau of Labor Statistics' CPI Inflation
Calculator. Source: https://data.bls.gov/cgi-bin/cpicalc.pl.
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Congress recognized the need to begin to reverse this trend and in
fiscal year 2018, provided an additional $75 million for CTE State
Grants, bringing the total investment to nearly $1.2 billion. In July
2018, the Carl D. Perkins Career and Technical Education Act of 2006
was reauthorized as the Strengthening Career and Technical Education
for the 21st Century Act (Perkins V) and in fiscal year 19, Congress
invested an additional $70 million in CTE State Grants to nearly $1.3
billion. These were very welcome steps in the right direction and
reflects Congress' understanding of the critical role CTE plays in
helping our Nation's learners and employers close the skills gap.
Congress should build on the momentum in fiscal year 2018 and fiscal
year 2019, and continue to strengthen the investment in CTE State
Grants in fiscal year 2020. And, Americans agree: 93 percent of voters
support increasing the investment in skills training, and more than
half of voters strongly support this idea.\10\
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\10\ https://www.nationalskillscoalition.org/news/press-releases/
body/Poll-Finds-Overwhelming-Support-for-More-Funding-for-Skills-
Training.pdf.
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Expanding funding for CTE programs will create a brighter future
for our community--leading to more career options for learners, better
results for employers, and increased growth for our economy. Learners
enrolled in CTE are increasingly high performers, with higher than
average graduation rates and impressive postsecondary enrollment rates.
The graduation rate for students who take a concentration of CTE
courses is about 94 percent, approximately 10 percentage points higher
than the national average.\11\ For example, in Missouri, the high
school graduation rate for students who took a concentration of CTE
courses in the 2016-2017 program year (the most recent year for which
data are available), was over 96 percent and for Tennessee, it was over
97 percent.\12\ Even achieving a 90 percent graduation rate nationwide
would have a significant impact--it's estimated that it would result in
a $5.7 billion increase in economic growth and $664 million in
additional Federal, State and local taxes (calculated for the class of
2015).\13\ Not only are students who concentrate in CTE more likely to
graduate from high school, they find success afterward as well. In
Alabama, nearly 94 percent of secondary students who concentrated in a
CTE program were enrolled in college, enlisted in the military or
working within 6 months of graduation.\14\ In Vermont, 88 percent of
postsecondary CTE graduates placed into careers, military service or
apprenticeship programs within 6 months.\15\ It is also important to
highlight that CTE learners are not the only ones accruing the many
benefits of CTE--taxpayers are also seeing a high return on investment
(ROI). For example, in Washington, secondary CTE sees a ROI of $7 for
every one dollar of investment.\16\ If we are serious about providing
learners with the real-world skills, hands-on opportunities and real
options for college and rewarding careers that come with CTE and making
progress toward closing the skills gap, then there is no better time
than now to invest $1.52 billion in CTE State Grants, which would be a
strong down payment on doubling the Federal investment in CTE State
Grants by fiscal year 2024.
---------------------------------------------------------------------------
\11\ https://perkins.ed.gov/pims/DataExplorer/Performance and
https://nces.ed.gov/ccd/tables/ACGR_RE_and_characteristics_2015-16.asp.
\12\ https://perkins.ed.gov/pims/DataExplorer/Performance.
\13\ http://graduationeffect.org/US-GradEffect-Infographic.pdf.
\14\ https://perkins.ed.gov/pims/DataExplorer/Performance.
\15\ https://perkins.ed.gov/pims/DataExplorer/Performance.
\16\ http://www.wtb.wa.gov/CTE2018Dashboard.asp.
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Please feel free to contact Kimberly A. Green
([email protected]), Advance CTE's Executive Director, should you
have any questions about our written testimony.
[This statement was submitted by Kimberly A. Green, Executive
Director,
Advance CTE.]
______
Prepared Statement of AIDS Alliance
Dear Chairman Blunt and Members of the Subcommittee:
AIDS Alliance for Women, Infants, Children, Youth & Families (AIDS
Alliance) was founded in 1994 to help respond to the unique concerns of
HIV-positive and at-risk women, infants, children, youth, and families.
AIDS Alliance conducts policy research, education, and advocacy on a
broad range of HIV/AIDS prevention, care, and research issues. We are
pleased to offer written testimony for the record as part of the fiscal
year 2020 Labor, Health and Human Services, Education, and Related
Agencies appropriations measure and endorse maintaining separate
funding and support for Part D of the Ryan White Program.
ryan white part d funding request
Sufficient funding of Ryan White Part D, the program funded solely
to provide family-centered primary medical care and support services
for women, infants, children, and youth with HIV/AIDS has successfully
identified, linked, and retained these vulnerable populations in much
needed care and treatment, resulting in optimum health outcomes. We
thank the Subcommittee for its continuous support of the Ryan White
Program and respectfully request that the Subcommittee maintain its
commitment to the Ryan White Part D and increase Ryan White Part D
funding by $9.9 million in fiscal year 2020.
ryan white part d background and history
Congress first acted to address pediatric AIDS in 1987, due to the
alarming increase in the number of reported pediatric AIDS cases by
providing $5 million for the Pediatric AIDS Demonstration Projects in
the fiscal year 1988 budget. Those demonstration projects became part
of the Ryan White CARE Act of 1990 and today are known as Ryan White
Part D. Since the program's inception in 1988, Part D programs have
served approximately 200,000 women, infants, children, youth, and
family members. These programs have been and continue to be the entry
point into medical care for these vulnerable populations. The family-
centered primary medical and supportive services provided by Part D are
uniquely tailored to address the needs of women, including HIV positive
pregnant women, HIV exposed infants, children and youth. Part D
programs are the only perinatal clinical service available to serve
HIV-positive pregnant women and HIV exposed infants, when payments for
such services are unavailable from other sources. Ryan White Part D
programs have been extremely effective in bringing the most vulnerable
populations into and retained in care and is the lifeline for women,
infants, children and youth living with HIV/AIDS. The Part D programs
continue to be instrumental in preventing mother-to-child transmission
of HIV and for ensuring that women, including HIV- positive pregnant
women, HIV exposed infants, children and youth have access to quality
HIV care. The program is built on a foundation of combining medical
care and essential support services that are coordinated,
comprehensive, and culturally and linguistically competent. This model
of care addresses the healthcare needs of the most vulnerable
populations living with HIV/AIDS in order to achieve optimal health
outcomes.
In fiscal year 2018, Ryan White Part D provided funding to 115
community-based organizations, including academic medical centers and
hospitals, federally qualified health centers, and health departments
in 39 States and Puerto Rico with $70.3 million to provide
comprehensive outpatient ambulatory family-centered primary and
specialty medical care and support services for women, infants,
children and youth with HIV. These grant recipients also provide case
management services (medical and non-medical); referrals for inpatient
hospital services; treatment for substance use, and mental health
services. Part D recipients also receive assistance from other parts of
the Ryan White Program that help support HIV testing and linkage to
care services; provide access to medication; additional medical care,
such as dental services; and key support services, such as case
management and transportation, which all are essential components of
the highly effective Ryan White HIV care model. This model has
continuously provided comprehensive quality healthcare delivery systems
that have been responsive to women, infants, children, youth and
families for three decades.
a response to women, infants, children, and youth
Ryan White Part D programs have been extremely effective in
bringing our most vulnerable populations into care and developing
medical care and support services especially designed to reach women,
infants, children, and youth. The groundbreaking results of the AIDS
Clinical Trial Group study 076 that proved the efficacy of AZT in
preventing mother-to-child transmission of HIV was significant for Ryan
White Part D programs as these programs played a leading role in
reducing mother-to-child transmission of HIV-from as many as 2000
babies born HIV-positive in 1990 to roughly 181 cases in 2012. As
appropriate funding is critical to maintain and improve upon this
success, AIDS Alliance was pleased that the President's fiscal year
2019 budget focused on accelerating the elimination of perinatal HIV
infection in the United States. Appropriate funding is critical to
maintain and improve upon this success, as an estimate for 2006
suggested that approximately 8,500 HIV-positive women that need
counseling services and support to prevent pediatric HIV infections
were giving birth every year in the United States. The most recent
available data reports that 11,355 infants (including HIV exposed
infants) and children were served by Ryan White Part D in 2010.
According to the CDC, youth aged 13-24 made up 21 percent of all new
HIV diagnoses in the country in 2016, with eighty-one percent of those
new diagnosis among young gay and bisexual males. Eighty-seven percent
of new HIV cases among women of the same age group were attributed to
heterosexual contact. Ryan White Part D programs are the entry point
into medical care for many of these HIV- positive youth as this is the
age group least likely to have access to quality healthcare. Though HIV
diagnoses among women have declined in recent years, more than 7,000
women received an HIV diagnosis in 2017. According to the Health
Resources and Services Administration, approximately 27.1 percent of
women received medical care from Ryan White Programs in 2017. Part D
provides medical and supportive services to a large number of women
over 50 who are HIV survivors which is a testament to the high standard
of care provided to Ryan White Part D programs. Support and care
through the Ryan White Part D program was and continues to be funding
of last resort for the most vulnerable women and children, who often
have fallen through the cracks of other public health safety nets. The
continuation of the Ryan White Program, in particular Ryan White Part D
will dramatically improve health access and outcomes for many more
women, infants, children, and youth living with HIV disease.
effective model of care
Ryan White Part D programs have been extremely effective in
retaining our most vulnerable populations in care and treatment. The
comprehensive coordinated medical care and support services provided by
Part D are uniquely tailored to address the needs of women, including
HIV positive pregnant women, HIV exposed infants, children and youth
living with HIV/AIDS and are central components of a highly effective
model of care designed to achieve optimal health outcomes. The family-
centered primary medical and specialty care along with supportive
services provided by Part D funded programs have enabled these funded
programs to successfully engage and retain vulnerable populations in
much needed care and treatment, resulting in positive health outcomes.
Part D is extremely cost effective relative to the care and treatment
services provided to populations highly impacted by HIV and remain a
critical component of the Ryan White Program as their vast networks of
service providers are fully engaged in addressing and meeting the
critical healthcare needs of women, infants, children and youth with
HIV/AIDS.
conclusion
While we recognize the considerable fiscal constraints Congress
faces in allocating limited Federal dollars, the requested increase of
$9.9 million in fiscal year 2020 will enable Ryan White Part D
programs, (often referred to as the lifeline for women, infants,
children, and youth), to continue to deliver life-saving HIV/AIDS care
and treatment for women, infants, children and youth with HIV and to
ensure that these populations are fully engaged and retained in care.
Without the Ryan White Part D program, many of these medically-
underserved populations with HIV would not receive the vital medical
care and support services they need. We thank the Subcommittee for its
work in ensuring that women, infants, children, and youth, living with
HIV receive the much needed care and treatment services necessary to
sustain their lives.
[This statement was submitted by Dr. Ivy Turnbull, Deputy Executive
Director, AIDS Alliance.]
______
Prepared Statement of The AIDS Institute
Dear Chairman Blunt and Members of the Subcommittee:
The AIDS Institute, a national public policy, research, advocacy,
and education organization, is pleased to offer testimony in support of
domestic HIV and hepatitis programs in the fiscal year 2020 Labor,
Health and Human Services, Education, and Related Agencies
appropriation measure. We thank you for your continued support and
respectfully request $291 million for the Administration's Ending the
HIV Epidemic Plan, to be distributed among several HHS programs. We
further request $1.012 billion for the CDC's HIV Prevention Programs;
$2.557 billion for the HRSA's Ryan White HIV/AIDS Program; $105 million
for the Minority HIV/AIDS Fund; $160 million for SAMHSA's Minority AIDS
Initiative Program; $3.502 billion for HIV/AIDS Research at the NIH;
$58 million for opioid related infectious disease programs at the CDC
and $134 million for CDC's Viral Hepatitis Programs. (Note: as detailed
below some of these requests encompass funding for the Ending the HIV
Epidemic initiative.)
hiv in the united states
Over 1.2 million people in the U.S. are living with HIV, only about
half of whom are virally suppressed, and there are an estimated 38,500
new infections each year. While we have made great progress since the
height of the epidemic, over the past 5 years the number of new HIV
diagnoses have remained stagnant at around 40,000 per year. HIV
continues to disproportionately impact certain populations, including
gay and bisexual men, the African American community, people living in
the South, people who inject drugs, and the transgender community. The
AIDS Institute believes that the United States has the treatment and
prevention tools necessary to end the epidemic, but doing so will
require increased Federal investments in the public health
infrastructure that serves people living with and at risk of HIV. The
vast majority of the discretionary programs supporting domestic HIV
efforts are funded through this Subcommittee.
ending the hiv epidemic: a plan for america
This year we have a unique opportunity to begin to make significant
progress towards the goal of ending the HIV epidemic because of the
Administration's new initiative entitled ``Ending the HIV Epidemic: A
Plan for America.'' This plan sets a bold but achievable goal of
reducing HIV infections by 75 percent in the next 5 years and 90
percent by 2030. The plan builds on the existing infrastructure serving
people with and at risk of HIV with innovated and intensified testing,
treatment and prevention programs. The AIDS Institute strongly supports
this plan and urges your Subcommittee to adopt the $291 million in
first year funding proposed in the President's Budget.
Of this funding, $140 million would be for the CDC Division of HIV/
AIDS Prevention to do targeted testing, connection to treatment, and
robust surveillance; $70 million would be for the Ryan White HIV/AIDS
Program to increase access to high-quality HIV care and treatment; $50
million would be for HRSA's Community Health Center program to provide
prevention services, emphasizing PrEP; $6 million would be for NIH's
Centers for AIDS Research to provide best practices to guide the plan;
and finally, $25 million would be for the Indian Health Service to
provide HIV prevention, treatment, education, and hepatitis C (HCV)
elimination in Indian Country. This coordinated, targeted and robust
plan will be community driven--incorporating voices of those who could
benefit most from prevention and treatment tools. The AIDS Institute
urges your Subcommittee to fund this request and ensure that these are
new funds are not at the cost of other programs.
The AIDS Institute has also submitted suggested report language to
help guide the development and implementation of the Ending the HIV
Epidemic Plan. This includes the importance of ensuring (1) adequate
community involvement including people living with and at risk of HIV;
(2) funding is distributed to those areas most in need; (3) funding for
community-based organizations; and (4) the syndemics of hepatitis and
STDs are addressed. We also believe it is important for the Committee
to know the proposed cost of the initiative in future years, along with
future savings, and the manner in which progress will be measured. We
also propose that the Administration provide annual reports to the
Congress on the initiative's efforts.
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. The CDC has reported that half of people who test positive
for HIV have been living with HIV more than 3 years, proving that
increasing access to testing is important to end the epidemic. 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 $1.012 billion,
which includes $50 million for school-based HIV prevention efforts and
$140 million for the Ending the HIV Epidemic Plan.
the ryan white hiv/aids program
The Ryan White HIV/AIDS Program provides medications, medical care,
and essential coverage completion services to almost half of all people
living with HIV in the United States, many of whom are uninsured or
underinsured. With people living longer and continued new diagnoses,
the demands on the program continue to grow. The Ryan White Program
successfully engages individuals in care and treatment, increases
access to HIV medications, and helps over 86 percent of clients achieve
viral suppression. Science has proven that if a person achieves viral
suppression, they cannot transmit HIV to another person, making the
Ryan White Program a key tool in preventing new HIV infections. The
AIDS Drug Assistance Program provides people access to lifesaving
medications and helps clients afford insurance premiums, deductibles,
and high cost-sharing of their medications, and is an important
component in the successful health outcomes for Ryan White clients.
The AIDS Institute requests that the Subcommittee fund the Ryan
White HIV/AIDS Program at a total of $2.557 billion in fiscal year
2020, distributed in the following manner:
--Part A at $686.7 million; Part B (Care) at $437 million; Part B
(ADAP) at $943.3 million; Part C at $225.1 million; Part D at
$85 million; Part F/AETC at $58 million; Part F/Dental at $18
million; and Part F/SPNS at $34 million; Ending the HIV
Epidemic Plan at $70 million.
community health centers
Pre-Exposure Prophylaxis (PrEP) is a once-a-day medication that
effectively prevents the transmission of HIV to an HIV negative person.
PrEP is a major breakthrough in HIV prevention and is one of the best
hopes we have for ending the HIV epidemic. In order to do so, PrEP must
be available to all 1.1 million people who could benefit from this
important drug. The Ending the HIV Epidemic Plan proposes the creation
of the first Federal program to provide PrEP to people at risk of HIV.
This program would be administered through the Community Health Centers
Program, and we urge your Subcommittee to fund the program at the
requested level of $50 million in fiscal year 2020.
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.
hiv/aids research
HIV/AIDS research at the NIH is the major source for developing
novel tools to treat and prevent HIV, as well as implement new
techniques to get these tools to the communities most impacted. The
AIDS Institute requests that your Subcommittee support $3.052 billion
in funding for HIV/AIDS Research at the NIH, which is consistent with
NIH's fiscal year 2020 HIV/AIDS Professional Judgment Budget.
Unfortunately, the President's fiscal year 2020 Budget proposed a $424
million cut to NIH HIV/AIDS research, which we urge you to reject. We
also urge you to ensure that the $6 million proposed to the Centers for
AIDS Research for the Ending the HIV Epidemic Plan be new funding and
not at the cost of other HIV research programs at NIH.
Additionally, we support the inclusion of report language stating
that HIV/AIDS research receive increased funding proportional to the
increases to NIH's total appropriations levels. This will help ensure
HIV/AIDS researchers can continue to develop new tools to fight the
epidemic and one day find a durable vaccine or cure for HIV.
viral hepatitis in the u.s
The CDC estimates there was a 350 percent increase in new
infections of HCV between 2010 and 2016. At least seventy percent of
new HCV infections are a result of injection drug use. Hepatitis B
(HBV) infections are also increasing, with approximately 20,000 new
cases occurring in 2016. There are an estimated 1.2 million people in
the United States living with HBV and 2.4 million living with HCV, yet
more than half of them are unaware of their infection. Left untreated,
viral hepatitis can cause liver damage, cirrhosis, and liver cancer. We
now have a highly effective cure for HCV, but it only works if people
are tested, diagnosed, and referred for treatment. Adding to this
problem, many States in the country have also been experiencing
outbreaks of hepatitis A (HAV).
cdc viral hepatitis prevention
Despite the large increase in the number of cases and the ongoing
HAV outbreaks, the CDC's Viral Hepatitis program funding is only $39
million, nowhere near the estimated $316 million a December 2016 CDC
professional judgment budget describes as being necessary for a
national program focused on decreasing mortality and reducing the
spread of the disease. Unfortunately, the President's fiscal year 2020
Budget maintains funding at the $39 million fiscal year 2019 level.
Only with increased funding can we begin to address the rise in viral
hepatitis and combat the impact of the opioid crisis. The AIDS
Institute recommends $134 million for CDC viral hepatitis activities in
order address this epidemic.
infectious disease impact of the opioid crisis
The recent explosion of opioid use has created tremendous risk for
HCV and HIV outbreaks and increasing infection rates among new groups
and undoing progress toward curbing transmissions. The systems built to
respond to HIV and HCV 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.
The SUPPORT Act of 2018 (115-H.R.6), which passed last year,
authorizes funding (Sec. 7141) to enhance the Nation's response to
preventing and treating infectious diseases commonly associated with
injection drug use and authorizes CDC to expand surveillance for those
diseases, including viral hepatitis and HIV. The AIDS Institute
supports the Administration's proposed $58 million for CDC's opioid-
related infectious disease elimination efforts. This would allow CDC to
work collaboratively with State and local health departments to improve
knowledge of the full scope of the burden of these infectious diseases.
One of our Nation's most effective tools in fighting opioid-related
infectious diseases is syringe service programs. We urge your
Subcommittee to remove all restrictions on Federal funding for syringe
service programs, including for the purchase of sterile syringes.
the teen pregnancy prevention program
Young people under the age of 25 account for one in five new HIV
infections in the U.S. We must ensure that they, especially those in
communities disproportionately impacted by HIV, have access to high
quality evidence-based sexual health programs. The Teen Pregnancy
Prevention Program (TPPP) funds innovative community-driven projects
aimed at reducing unplanned pregnancies and increasing access to sexual
health education, such as HIV prevention information. TPPP is a key
tool in our HIV prevention work with young people, and we request the
Subcommittee fund TPPP at $130 million in fiscal year 2020.
sexual risk avoidance/abstinence-only education
Our Nation has wasted billions of dollars funding ineffective and
harmful abstinence-only programs, now rebranded as ``sexual risk
avoidance.'' These programs have little evidence of success and are
stigmatizing, especially to LGBTQ and gender non-conforming young
people. We urge the Subcommittee to fully defund these programs, saving
taxpayer $35 million a year, and ensuring that young people are not
prevented from learning about sexual health, including HIV prevention
tools.
title x family planning program
The Title X family planning program provides family planning and
sexual health services to over 4 million people with low incomes across
the Nation. Title X clinics are essential to ensuring access to family
planning and sexual health services. These clinics are required to
provide HIV prevention education and HIV testing on-site or by
referral. We request that the Subcommittee appropriate $400 million for
Title X in fiscal year 2020.
______
Prepared Statement of AIDS United
AIDS United fiscal year 2020 Testimony prepared for the Senate
Committee on Appropriations Subcommittee on Labor, Health and Human
Services, Education, and Related Agencies
As the Committee begins its important deliberations on the fiscal
year 2020 Labor, Health and Human Services, Education, and Related
Agencies appropriations bill, we thank you for your continued
commitment to addressing HIV/AIDS in the United States and we ask that
you maintain the Federal Government's commitment to safety net programs
that protect public health.
In his recent State of the Union address, President Trump
challenged this Congress and the Nation to end the domestic HIV
epidemic by 2030. Secretary Azar championed this auspicious goal
through the Department of Health and Human Service's fiscal year 2020
budget request, which calls for $291 million in increased funding for
HIV prevention, care, and treatment to the domestic HIV/AIDS portfolio.
We are encouraged by the Administration's increased funding request for
the Ryan White HIV/AIDS Program, HIV prevention programs at the Centers
for Disease Control and Prevention (CDC), and HRSA's Community Health
Centers Program and urge the Committee to build upon these proposed
funding increases in your fiscal year 2020 appropriations. We
appreciate the call for increased funding after years of flat funding
for these vital programs. However, we also encourage you to align with
the Administration's stated goal to end the epidemic by providing
adequate funding for AIDS research at the National Institutes of health
(NIH) and other programs that protect and advance public health in
fiscal year 2020 by at least matching the HIV investments proposed in
the House Labor, Health and Human Services, Education, and Related
Agencies Subcommittee mark-up.
We have a unique opportunity to make history. For the first time
since the CDC originally reported a few HIV cases in its Morbidity and
Mortality Weekly Report 38 years ago, we are able to end the HIV
epidemic the United States. Scientific advances and groundbreaking HIV
research have shown us that it is not only possible for people to live
long, healthy lives with HIV, but that people on antiretroviral
medication who have achieved an undetectable viral load cannot transmit
the virus to others. Period. This knowledge alone, however, will not
affect the change we need.
Over one million Americans are living with HIV, and annual HIV
diagnoses continue to hover around 40,000 new HIV transmissions each
year due in part to increases in injection drug use across the country
that are resulting in new HIV outbreaks, especially in areas with
scarce public health resources. It is only through significant Federal
investment in the following programs and an unyielding commitment to
providing access to the support services needed to ensure populations
impacted by HIV adhere to their care and treatment that we will be able
to end the HIV epidemic:
the ryan white hiv/aids program
The Ryan White HIV/AIDS Program, a payer of last resort, provides
medications, medical care, and essential coverage completion services
to almost 550,000 low-income, uninsured, and/or underinsured
individuals living with HIV. Viral suppression, and the preventive
benefits thereof, are only possible if an individual is in care and on
treatment. Over 85 percent of Ryan White clients have achieved viral
suppression, compared to just 49 percent of people living with HIV
nationwide. This is achieved through clients' access to the high-
quality, patient-centered, comprehensive care that the Ryan White
Program provides, which enables clients to remain in care and on
treatment.
The Ryan White Program continues to serve populations that are
disproportionally impacted by HIV, including racial and ethnic
minorities, who make up three-quarters of the program's clients. Almost
two-thirds are living at or below the Federal poverty level. To improve
the continuum of care and advance our goal of ending the epidemic,
sustained funding for all parts of the Ryan White Program is critically
important to ensure that people living with HIV have uninterrupted
access to healthcare, medications, and services.
Funding for the Ryan White Program is critical to improving health
coverage and outcomes for people living with HIV. Therefore, we urge
you to fund the Ryan White Program at a total of $2.557 billion in
fiscal year 2020, including the $70 million of new funding in the
President's Budget Request (refer to attached chart for more detailed
funding allocation requests).
prevention--cdc hiv & std prevention and surveillance
There has been incredible progress in the fight against HIV/AIDS
and other sexually transmitted diseases (STDs) over the last 30 years.
Because of the efforts by CDC's National Center for HIV/AIDS, Viral
Hepatitis, STD, and TB Prevention (NCHHSTP) and its grantees, hundreds
of thousands of new infections have been averted and billions of
dollars in treatment costs have been saved. This confirms that STD
prevention efforts can work, but STD rates continue to rise at historic
levels. Through expanded HIV testing efforts, largely funded by the
CDC, the number of people who are aware of their HIV status has
increased, but 15 percent of all people living with HIV do not know
their status.
AIDS United is pleased that the CDC has targeted funds to fight HIV
among gay and bisexual men and transgender people, including funding
for pre-exposure prophylaxis (PrEP)--a highly effective prevention tool
for people who are HIV-negative--plus ongoing medical care and
antiretroviral treatment for people living with HIV. While we are
making progress in decreasing transmissions among some women, women of
color are still disproportionately affected: Black women accounted for
61 percent of all women infected in 2016, and the HIV diagnosis rate
among Latinas in 2015 was more than three times that of white women.
Despite dramatic increases in STDs in recent years, funding for the
CDC's STD prevention programs has not increased since 2003, leaving
health departments overwhelmed and understaffed. Ending HIV must take a
multifaceted approach. Increased funding for CDC's STD prevention
programs will support testing, targeted prevention interventions,
public education campaigns, and surveillance activities that support
HIV and STD prevention outcomes. This funding supports a combination of
effective evidence-based approaches including testing, linkage to care,
condoms, syringe services programs, and access to PrEP.
For fiscal year 2020, we urge you to fund the CDC Division of HIV
prevention and surveillance at $822.7 million, the CDC's STD division
to $227.3 million, and, in accordance with the Administration's Ending
the Epidemic initiative, CDC testing and connection to preventative
services programs at $140 million.
hiv/aids research at the national institutes of health
U.S. leadership in the global response to HIV/AIDS, particularly in
research, is essential and irreplaceable; we must invest adequate
resources in HIV research at the NIH. Research supported by the NIH is
far-reaching and has supported advances in science as well as
innovations that have led to better drug therapies and behavioral &
biomedical prevention interventions well beyond HIV itself, saving the
lives of millions. Specifically, NIH support proved the efficacy of
PrEP, and funding from the Institutes made it possible to learn the
effectiveness of treatment as prevention and has gotten us closer than
ever before to identifying an effective HIV vaccine. We are
appreciative of the Committee's bipartisan support of funding increases
for the NIH over the course of this epidemic and urge you to direct
some of these resources to continued HIV/AIDS research so that more
effective HIV treatments and ultimately a cure can be realized.
We request that HIV/AIDS research at the NIH receive a total of
$3.502 billion in fiscal year 2020.
addressing the infectious disease consequences of the opioid epidemic
AIDS United strongly urges the Committee to remove all restrictions
on Federal funds for syringe services programs, particularly in
jurisdictions experiencing or at risk for HIV or viral hepatitis
outbreaks associated with injection drug use. People with HIV in the
United States are often affected by chronic viral hepatitis; about one-
third are coinfected with either hepatitis B (HBV) or C (HCV). Over the
last several years, the opioid crisis has led to concerning numbers of
new infections tied to injection drug use, resulting in nearly 55,000
new hepatitis cases each year. In fact, HCV is now responsible for more
deaths annually than all other reportable infectious diseases combined.
The CDC has identified 220 counties that are most vulnerable to
outbreaks of HCV and HIV related to injection drug use, representing
only the top 5 percent of vulnerable counties overall. At present, more
than 93 percent of those 220 counties vulnerable to HIV/HCV outbreaks
do not have comprehensive syringe services programs. Over the past 30
years, the CDC has collected compelling evidence of syringe services
programs' effectiveness. Syringe services programs increase access to
comprehensive resources such as HIV and hepatitis testing and linkage
to treatment, referral to substance use treatment and assistance,
behavioral health services, primary care, overdose treatment and
education, hepatitis A and B vaccinations, and other ancillary
services. Syringe services programs are recommended by AIDS United as a
key component of the Department of Health and Human Service's response
to the opioid crisis in CDC, HRSA, and SAMHSA appropriations, and as an
indispensable tool in any effort to end the domestic HIV and viral
hepatitis epidemics.
AIDS United urges the Committee to increase funding for the CDC
Division of Viral Hepatitis activities to $134 million to ensure
appropriate levels of testing, education, screening, and linkage to
care.
AIDS United looks forward to a positive outcome for the funding
request for HIV/AIDS domestic programs that will enable us to end the
HIV epidemic in the United States. We thank you for your continued
leadership and support of these critical programs for so many people
living with HIV and the organizations that serve them nationwide.
[This statement was submitted by Jesse Milan, Jr., CEO, AIDS
United.]
______
Prepared Statement of Alabama Possible
Thank you for the opportunity to share our input on the Federal
appropriations process. We want to highlight how increased support to
Historical Black Colleges and Universities (HBCUs) can reduce the
disproportionate debt burden for student borrowers of color.
Alabama is home to the largest number of HBCUs in the Nation, and
Alabama Possible is a statewide nonprofit organization that breaks down
barriers to prosperity through advocacy, education, and collaboration.
Our research-driven work equips Alabamians with resources to build a
stronger State. We also influence public policy to ensure all
Alabamians have equal opportunities to lead prosperous lives. As a
result of our FAFSA completion campaign, Cash for College Alabama,
Alabama had the fourth highest improvement in FAFSA completions for the
2018-2019 FAFSA cycle. Consequently, Alabama families were able to
leverage $72 million in Pell Grant dollars to continue their education
after high school.\1\
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\1\ Form Your Future Tracker. National College Access Network.
https://public.tableau.com/profile/
bill.debaun.national.college.access.network#!/vizhome/
FormYourFutureFAFSATracker-2018-19FAFSACycleThroughJune292018/
CurrentWeekRanking.
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The Alabama Workforce Council reports that only 43 percent of
Alabamians had postsecondary credentials as of 2017, while 51 percent
of job openings will require a credential by 2025. Wide disparities
exist between whites and people of color; 47 percent of white working-
age adults have valuable postsecondary credentials, while only 33
percent of African Americans and 24 percent of Latinos do.\2\ Closing
these attainment gaps should not further aggravate the already
inequitable burden of student loan debt.
---------------------------------------------------------------------------
\2\ Success Plus Dashboard. Alabama Workforce Council.
alabamaworks.com/successplus/.
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Completion is critical for African American borrowers, and HBCUs
play an essential role on this front. In fact, despite that HBCUs
represent just 3 percent of 2-year and 4-year public and private
nonprofit institutions eligible for Federal dollars, they award 17
percent of all bachelor's degrees earned by African American
students.\3\ Furthermore, HBCUs have conferred 24 percent of the
bachelor's degrees earned by black students in science, technology,
engineering, and mathematics fields since the early 2000s.\4\ Thus,
HBCUs' track record with regards to postsecondary attainment warrants
the allocation of an increased amount of taxpayer dollars.
---------------------------------------------------------------------------
\3\ Williams, K. and Davis, B. (2019). Public and Private
Investments and Divestments in
Historically Black Colleges and Universities. American Council on
Education and United Negro College Fund. https://www.acenet.edu/news-
room/Documents/public-and-private-investments-and-divestments-in-
hbcus.pdf.
\4\ Preston, DeShawn C. (2017). Historically Black Colleges and
Universities (HBCUs) Serving as a Community Cultural Wealth for African
Americans Who Enroll in STEM Doctoral Programs. Clemson University.
https://tigerprints.clemson.edu/all_dissertations/1931.
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A critical means of supporting this extraordinary attainment at
HBCUs is the Empowering HBCU Grant Program in Title III-B, Section 323
of the Higher Education Act (HEA). These formula-based grant dollars
are authorized for--among other things--academic resources and
endowment capacity building. As noted below, this program faced
decreases in appropriations from fiscal year 2012 to fiscal year 2013,
fiscal year 2013 to fiscal year 2014, fiscal year 2014 to fiscal year
2015, and fiscal year 2016 to fiscal year 2017. Furthermore, the
mandatory spending for this program in Title III-F, Section 371 of HEA
expired in fiscal year 2019 (fiscal year 2019).\5\ Thus, a significant
source of funding for a demonstrably successful program is set to
disappear if Congress does not act before the 2020 appropriations have
concluded. The figure below depicts the appropriations negotiations
outcomes for this program from fiscal year 2011 through the most recent
omnibus.\6\
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\5\ United States Department of Education Budget Tables. https://
www2.ed.gov/about/overview/budget/tables.html.
\6\ Ibid.
Strengthening HBCU Grant Program Appropriations, FY2011-2019
[In Millions]
----------------------------------------------------------------------------------------------------------------
Mandatory
Discretionary Mandatory Total Appropriations
Fiscal Year Appropriations Appropriations Appropriations as Percent of
Total
----------------------------------------------------------------------------------------------------------------
2019............................................ $282,420 79,730 362,150 22%
2018............................................ 279,624 79,390 359,014 22%
2017............................................ 244,694 79,135 323,829 24%
2016............................................ 244,694 79,220 323,914 25%
2015............................................ 227,524 78,795 306,319 26%
2014............................................ 223,783 78,880 302,663 26%
2013............................................ 216,056 80,665 296,721 27%
2012............................................ 227,980 85,000 312,980 27%
2011............................................ 236,991 85,000 321,991 26%
----------------------------------------------------------------------------------------------------------------
Absent a significant increase in discretionary spending in fiscal
year 2020 or an agreement reached outside appropriations negotiations,
the very foundation of this soon-to-be expired program will fracture. A
drastic decrease in funding for this program will inevitably force
HBCUs to turn to alternative revenue streams, potentially leaving
students with a higher bill for tuition and fees than anticipated.
Raising tuition and fees would be especially problematic for HBCU
students, who already borrow nearly twice as much as their peers
enrolled at non-HBCU institutions.\7\ To avoid that unacceptable
outcome, we ask that, once reauthorized, mandatory appropriations for
this program should be indexed to inflation to ensure at least moderate
year-over-year increases, unlike the cuts resulting from the majority
of the last eight budget cycles.
---------------------------------------------------------------------------
\7\ Saunders, K.M., Williams, K.L., & Smith, C. L. (2016). Fewer
Resources More Debt: Loan Debt Burdens Students at Historically Black
Colleges & Universities. United Negro College Fund Frederick D.
Patterson Research Institute. http://images.uncf.org/production/
reports/FINAL_HBCU_Loan_Debt_Burden_Report.pdf.
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It is essential that the investments made in this program reflect
the outstanding nature of the outcomes to which it has contributed.
Thus, we urge you and your colleagues to earnestly prioritize this
truly pressing need during the appropriations process. We greatly
appreciate your attention to this request and would gladly make
ourselves available should you require any additional information.
[This statement was submitted by Kristina Scott, JD, Alabama
Possible.]
______
Prepared Statement of the Alliance for Aging Research
Dear Chairmen Shelby and Cole and Ranking Members Leahy and Murray:
The Alliance for Aging Research (Alliance) is the leading nonprofit
organization dedicated to accelerating the pace of scientific
discoveries and their application to vastly improve the universal
experience of aging and health. The Alliance support increased funding
of basic, translational, clinical and other evidence-based research
made possible by the National Institutes of Health (NIH) and the
National Institute on Aging (NIA) among other Federal public health
organizations. We appreciate the opportunity to submit comments on the
fiscal year 2020 Labor, Health and Human Services, Education, and
Related Agencies appropriations process.
The United States population is aging at an unprecedented rate and
advances in biomedical research will enhance the quality of life of our
Nation's older adults. We would like to thank you for your strong
leadership and support of biomedical research at the NIH and NIA in
fiscal year 2019. The research funded by your respective committee's
will empower older adults to live longer, happier, more productive
lives and reduce healthcare costs over the long term.
As you prepare the fiscal year 2020 appropriations legislation, we
ask for sufficient Federal resources be dedicated to sustaining and
enhancing biomedical research at the NIA, and across the NIH.
Considering the range of promising scientific opportunities at the NIH
and the potential of this research to reduce human suffering and
economic burden of many age-associated diseases, the Alliance supports
the AD Hoc Group for Medical Research's recommendation to appropriate
at least $41.6 billion in fiscal year 2020 for the NIH, including funds
provided through the 21st Century Cures Act for targeted initiatives.
This is a $2.5 billion increase over the program funding allocated in
fiscal year 2019.
In addition, we request targeted funding increases for aging and
Alzheimer's disease and related dementia (ADRD) research to sustain the
promising work of the NIH in these domains. Specifically, the Alliance
requests a $500 million increase in the fiscal year 2020 NIH budget to
support aging research, including biomedical, behavioral, and social
science research efforts. Additionally, we request a minimum increase
of $350 million in funding for Alzheimer's disease and related dementia
research. These increases are necessary to ensure the NIH and NIA have
the resources they need to address dementia and many other age-related
chronic diseases.
The health services research funded by the Agency for Healthcare
Research and Quality (AHRQ) helps enhance provider-patient
relationships, improves patient safety, and promote higher quality care
through its National Quality Measurement Clearinghouse. We respectfully
request that you fund the AHRQ at the level of $460 million for fiscal
year 2020. This level is proportionate with the agency's funding for
fiscal year 2010 when adjusted for inflation. Additionally, with the
reauthorization of the Patient-Centered Outcomes Research Trust fund
this year, a strong investment from your committee is vital for
preserving the core activities of the agency.
Antibiotic resistance is one of the greatest public health threats
of our time. To address this crisis, we urge you to prioritize funding
for the Center for Disease Control and Prevention (CDC) antibiotic
resistance programs below. The Alliance for Aging Research supports
$200 million in fiscal year 2020 appropriations for the CDC Antibiotic
Resistance Solutions Initiative. This level of funding would allow CDC
to expand healthcare-associated infections and antimicrobial resistance
prevention efforts to all 50 States. We believe that at least $32.5
million in fiscal year 2020 should also be devoted to the Advanced
Molecular Detection Initiative to maintain CDC's ability to effectively
guide public health action, in the event of emerging resistant
infections. The Alliance for Aging Research also requests at least
$22.75 million in fiscal year 2020 funding for the CDC National
Healthcare Safety Network. This would enable infection data reporting
to more than 20,000 healthcare facilities across the continuum of care,
including acute-care hospitals, dialysis facilities, nursing homes and
ambulatory surgical centers.
Vaccine-preventable diseases cause significant illness,
hospitalization, pain, disability, and death in the United States,
particularly when it comes to older adults. Unfortunately, adult
vaccination rates in the are dangerously low and falling short of
national targets, despite the devastating effects vaccine-preventable
diseases can have. Immunizations are a cost-effective form of
preventive medicine that can protect the health and wellbeing of older
Americans. The Alliance urges the subcommittee to provide $710 million
for the National Immunization Program National Center for Immunization
and Respiratory Diseases, $187.5 million for Influenza Planning and
Response and $6.4 million for the National Vaccine Program Office to
maintain a robust immunization infrastructure to protect the population
against common vaccines preventable conditions.
Please consider the Alliance for Aging Research a resource to you
and your staff. If you have questions or more additional information,
please contact Ryne Carney the Alliance's Public Policy Manager at
[email protected].
Sincerely.
[This statement was submitted by Susan Peschin, MHS, President and
CEO,
Alliance for Aging Research.]
______
Prepared Statement of Alliant Energy
Chairman Blunt and Ranking Member Murray:
On behalf of Alliant Energy, I respectfully submit this written
testimony for the April 9, 2019 hearing for Public Witnesses. I'm Linda
Mattes, Vice President of Customer Operations at Alliant Energy, a
Midwest U.S. energy provider that generates and supplies electricity
and natural gas to nearly 1.4 million customers in Iowa and Wisconsin,
whom we are privileged to serve.
I would like to thank the Subcommittee on Labor, Health and Human
Services for the opportunity to submit testimony in support of the
bipartisan Federal Low-Income Home Energy Assistance Program (LIHEAP),
and more specifically to request that the committee favorably advance
increased Federal funding for the program to help meet the growing need
to provide energy assistance to economically vulnerable Americans.
By way of background, Alliant Energy serves our customers across a
diverse region that covers more than 54,000 square miles and serves
more than 1,200 communities. Whether in a city, a small town, or a
rural area, expectations remain the same: our customers count on us to
provide secure and reliable energy that is cost-effective.
This winter, our service territory experienced record-breaking cold
air temperatures, with wind chills not seen in the 21st century in
neither Iowa nor Wisconsin. Such temperatures are dangerous and can be
deadly within minutes of exposure. With such extreme conditions
necessitating higher-than-normal energy usage, we recognize the
financial impact energy bills place on families with limited incomes.
In our service territory, approximately 48 percent of our customers
have a household income of less than $50,000 a year, while nearly 22
percent of our customers have household incomes that are less than
$25,000 a year. Serving economically distressed areas requires Alliant
Energy to manage costs for all of our customers, and advocate for the
economic health of the communities we serve.
Alliant Energy has a long and successful history of providing
energy efficiency programs, partnering with community action agencies,
and working with State-level agencies to help our customers manage
their energy use and identify LIHEAP eligible customers. Additionally,
we partner with local and State entities to help educate our customers
and provide access to these important programs.
Earlier this year, Alliant Energy donated $2 million to our
Hometown Care Energy Fund to provide financial help for income-eligible
customers across our service area. This donation alone will help more
than 5,000 Iowa and Wisconsin households with their energy bills in
2019. The Hometown Care Energy Fund is supported by Alliant Energy and
its many caring customers, employees, and shareowners. We are also
proud to offer confidential financial help for the elderly, disabled,
and families trying to make ends meet. Alliant Energy's commitment to
providing our customers with energy assistance is steadfast, which is
why one of our top public policy priorities is to advocate for
continued robust Federal funding for LIHEAP.
LIHEAP is not a Federal entitlement program. Every year, Congress
must appropriate funding so energy assistance can be provided to
families in need. As the Members of this subcommittee are aware, there
is no mandatory cost-of-living or inflationary adjustment that
automatically raises Federal LIHEAP funding levels despite changing
economic conditions. Congress cut LIHEAP's annual appropriation almost
by one-third between fiscal year 2010 and fiscal year 2017 despite the
growing need for the program. Funding for LIHEAP is currently at $3.37
billion, which falls well short of meeting the energy assistance needs
of low income Americans, including our customers.
We are honored to partner with the National Energy & Utility
Affordability Coalition (NEUAC), a nonprofit organization comprised of
diverse organizations dedicated to meeting the economic needs of low
income energy consumers and to advocating for the LIHEAP program.
Iowa: https://neuac.org/wp-content/uploads/2019/02/State-Sheet-
2020-Iowa.pdf.
Wisconsin: https://neuac.org/wp-content/uploads/2019/02/State-
Sheet-2020-Wisconsin.pdf.
The State-level LIHEAP fact sheet links above compile household and
poverty data from the U.S. Department of Health and Human Services, the
U.S. Census Bureau, and the National Energy Assistance Director's
Association. The data paints a stark picture, showing more than 69
percent of Iowa residents and 57 percent of Wisconsin residents, while
eligible for LIHEAP, are not able to receive any energy assistance
funding largely due to inadequate Federal funding.
As your committee considers funding for this critical program,
Alliant Energy urges you to consider a substantial LIHEAP funding
increase to provide energy assistance for economically vulnerable Iowa
and Wisconsin residents. Thank you for your consideration of this
request.
[This statement was submitted by Linda K. Mattes, Vice President of
Customer Operations, Alliant Energy.]
______
Prepared Statement of the Alzheimer's Association and
Alzheimer's Impact Movement
The Alzheimer's Association and Alzheimer's Impact Movement (AIM)
appreciate the opportunity to submit written testimony on the fiscal
year 2020 appropriations for Alzheimer's research and public health
activities at the U.S. Department of Health and Human Services.
Specifically, we respectfully request a $350 million increase for
Alzheimer's research at the National Institutes of Health (NIH) and $20
million for implementation of the Building Our Largest Dementia (BOLD)
Infrastructure for Alzheimer's Act (Public Law 115-406) at the Centers
for Disease Control and Prevention (CDC).
Founded in 1980, the Alzheimer's Association is the world's leading
voluntary health organization in Alzheimer's care, support, and
research. The Alzheimer's Association is the nonprofit with the highest
impact in Alzheimer's research worldwide and is committed to
accelerating research toward methods of treatment, prevention, and,
ultimately, a cure. The Alzheimer's Impact Movement (AIM) is the
advocacy arm of the Alzheimer's Association, working in strategic
partnership to make Alzheimer's a national priority. Together, the
Alzheimer's Association and AIM advocate for policies to fight
Alzheimer's disease, including increased investment in research,
improved care and support, and development of approaches to reduce the
risk of developing dementia.
alzheimer's impact on american families and the economy
The most important reason to address Alzheimer's is because of the
suffering it causes to millions of Americans and their families.
Alzheimer's is a progressive brain disorder that damages and eventually
destroys brain cells, leading to a loss of memory, thinking, and other
brain functions. Ultimately, Alzheimer's is fatal. We have yet to
celebrate the first survivor of this devastating disease.
In addition to the suffering caused by the disease, however,
Alzheimer's is also creating an enormous strain on the healthcare
system, families, and Federal and State budgets. According to an NIH-
funded study published in the New England Journal of Medicine,
Alzheimer's is the most expensive disease in America, with costs set to
skyrocket at unprecedented rates. While there are over 5 million
Americans currently living with the disease, without significant
action, as many as 14 million Americans will have Alzheimer's by 2050
and costs will exceed $1.1 trillion (in 2019 dollars). As the current
generation of baby boomers age, near-term costs for caring for those
with Alzheimer's will balloon, as Medicare and Medicaid will cover more
than two-thirds of the costs for their care.
Caring for people with Alzheimer's will cost all payers--Medicare,
Medicaid, individuals, private insurers, and HMOs--$20 trillion over
the next 40 years. As noted in the 2019 Alzheimer's Disease Facts and
Figures report, in 2019 America will spend an estimated $290 billion in
direct costs for those with Alzheimer's, including $195 billion in
costs to Medicare and Medicaid. Average per person Medicare costs for
those with Alzheimer's and other dementias are more than three times
higher than those without these conditions. Average per senior Medicaid
spending is 23 times higher.
investing in alzheimer's treatments
Congress unanimously passed the National Alzheimer's Project Act
(NAPA) (Public Law 111-375) in 2010, requiring the creation of an
annually-updated strategic National Plan to Address Alzheimer's Disease
(National Plan) to help those with the disease and their families today
and to change the trajectory of the disease for the future. The
National Plan must include an evaluation of all federally-funded
efforts in Alzheimer's research, care, and services--along with their
outcomes. The primary research goal of the National Plan is to prevent
and effectively treat the disease by 2025.
If America is going to succeed in the fight against Alzheimer's,
Congress must continue to provide the resources scientists need to do
their work. Understanding this, in 2014 Congress passed the
Consolidated and Further Continuing Appropriations Act of 2015 (Public
Law 113-235), which included the Alzheimer's Accountability Act (S.
2192/H.R. 4351). The Alzheimer's Accountability Act requires NIH to
develop a Professional Judgment Budget focused on the research
milestones established by the National Plan. This provides Congress
with an account of the resources that NIH has confirmed are needed to
reach the 2025 goal. The Alzheimer's Association and AIM urge Congress
to fund the research targets outlined in the Professional Judgment
Budget by supporting an additional $350 million for NIH Alzheimer's
funding in fiscal year 2020.
Recent funding increases have been critical to progress toward the
primary research goal to effectively treat and prevent Alzheimer's by
2025--including advances into new biomarkers to detect the disease;
building better animal models to enable preclinical testing of
promising therapeutics; and bolstering the Alzheimer's research
workforce to enable the expertise, experience, and new thinking needed
to understand the complex causes of Alzheimer's disease and related
dementias.
However, Alzheimer's continues to be the only leading cause of
death in the United States without a way to prevent, cure, or even slow
its progression. The primary reason this remains true is that
investment in Alzheimer's research is still only a fraction of what's
been applied over time to address other major diseases. Between 2000
and 2017, the number of people dying from Alzheimer's increased by 145
percent while deaths from other major diseases have decreased
significantly or remained approximately the same.
It is vitally important that NIH continues to increase the
investment in Alzheimer's research so we can see the same promising
advances that other major diseases have realized with sustained, robust
funding. An increase of $350 million in fiscal year 2020 would allow
scientists to target a precision medicine approach to deliver the right
treatments at the right stage of the disease; enable NIH to follow up
on successful Phase I drug trials by initiating more Phase II trials
focused on new therapeutic targets; and support the inclusion of
Alzheimer's phenotype and environmental exposure measures in non-
Alzheimer's cohorts, like cardiovascular disease and cancer, which have
a wealth of data that could unlock new discovery research and
accelerate cross-validation of discoveries made in Alzheimer's cohorts.
A disease-modifying or preventive therapy would not only save
millions of lives but would save billions of dollars in healthcare
costs. Specifically, if a treatment became available in 2025 that
delayed onset of Alzheimer's for 5 years (a treatment similar in effect
to anti-cholesterol drugs), savings would be seen almost immediately,
with Medicare and Medicaid saving a cumulative $535 billion in the
first 10 years.
addressing alzheimer's as a public health crisis
As scientists continue to search for a way to cure, treat, or slow
the progression of Alzheimer's through medical research, public health
plays an important role in promoting cognitive function and reducing
the risk of cognitive decline. Investing in a nationwide Alzheimer's
public health response will help create population-level improvements,
achieve a higher quality of life for those living with the disease and
their caregivers, and reduce associated costs.
Last year, Congress acted decisively to address Alzheimer's as an
urgent and growing public health crisis through the passage of the BOLD
Infrastructure for Alzheimer's Act (Public Law 115-406). This strong
bipartisan law authorizes $100 million over 5 years for the CDC to
build a robust Alzheimer's public health infrastructure across the
country. The Alzheimer's Association and AIM urge Congress to include
the full $20 million for the first year of BOLD's implementation at CDC
in fiscal year 2020.
With this important funding, CDC will establish Alzheimer's and
Related Dementias Public Health Centers of Excellence across the
country and fund State, local, and Tribal public health departments to
increase early detection and diagnosis, reduce risk, prevent avoidable
hospitalizations, reduce health disparities, support the needs of
caregivers, and provide care planning for people living with the
disease. These important public health actions can allow individuals
with Alzheimer's to live in their homes longer and delay costly long-
term nursing home care. The law also aims to increase the analysis and
timely reporting of data. This data is critical to identifying
opportunities for public health interventions, helping stakeholders
track progress in the public health response, and enabling State and
Federal policymakers to make informed decisions when developing plans
and policies.
conclusion
The Alzheimer's Association and AIM appreciate the steadfast
support of the Subcommittee and its priority setting activities. We
thank the Subcommittee and Congress for previous increases in
Alzheimer's research activities at NIH, but the current funding level
is still short of the total investment needed to meet the National
Plan's primary research goal of finding a treatment or cure for
Alzheimer's and other dementias by 2025. We ask Congress to continue to
address Alzheimer's with the bipartisan collaboration demonstrated in
previous years by providing an additional $350 million for Alzheimer's
research activities at NIH and $20 million for implementation of the
BOLD Infrastructure for Alzheimer's Act at CDC in fiscal year 2020.
______
Prepared Statement of the Alzheimer's Association
+$350 million for Alzheimer's Research.--The Alzheimer's
Association respectfully requests an additional $350 million at the
National Institute on Aging for Alzheimer's disease research.
Alzheimer's is the most expensive disease in the United States. It
is the only leading cause of death in this country with no effective
means of treatment or prevention. In 2019, the United States will spend
$290 billion caring for individuals with Alzheimer's and other
dementias, with $195 billion of that amount paid by Medicare and
Medicaid. Unfortunately, our work is only growing more urgent. More
than 5 million Americans are living with Alzheimer's and, without
significant action, nearly 14 million Americans will have Alzheimer's
by 2050. However, estimates suggest that if a treatment became
available in 2025 that delayed the onset of Alzheimer's for 5 years,
Medicare and Medicaid would save a cumulative $535 billion over just
the first 10 years after that treatment became available.
Recent funding increases have been critical to progress toward the
primary research goal to effectively treat and prevent Alzheimer's by
2025--including advances into new biomarkers to detect the disease;
building better animal models to enable preclinical testing of
promising therapeutics; and bolstering the Alzheimer's research
workforce to enable the expertise, experience, and new thinking needed
to understand the complex causes of Alzheimer's disease and related
dementias.
It is vitally important that NIH continues to build upon these, and
many other, promising research advances. Increased funding would allow
scientists to find a precision medicine approach to deliver the right
treatments at the right stage of the disease; enable NIH to follow up
on successful Phase I drug trials by initiating more Phase II trials
for agents against new therapeutic targets; and support the
inclusion of Alzheimer's phenotype and environmental exposure
measures in non-Alzheimer's cohorts, like cardiovascular disease and
cancer, which have a wealth of data that could unlock new discovery
research and accelerate cross-validation of discoveries made in
Alzheimer's cohorts.
Proposed Report Language:
national institutes of health--national institute on aging
Alzheimer's Disease.--The Committee recommends an increase of
$350,000,000 for NIA. In keeping with longstanding practice, the
Committee does not recommend a specific amount of NIH funding for this
purpose or for any other individual disease. Doing so would establish a
dangerous precedent that could politicize the NIH peer review system.
Nevertheless, in recognition that Alzheimer's disease poses a
serious threat to the Nation's long- term health and economic
stability, the Committee expects that a significant portion of the
recommended increase for NIA should be directed to research on
Alzheimer's. The exact amount should be determined by scientific
opportunity of additional research on this disease and the quality of
grant applications that are submitted for Alzheimer's relative to those
submitted for other diseases. The NIA is encouraged to continue
addressing the research targets outlined in the fiscal year 2020
Professional Judgement Budget.
centers for disease control and prevention
$37 Million for Alzheimer's Public Health Rresponse.--The
Alzheimer's Association respectfully requests $37 million to provide
full funding for the authorization contained in the Building Our
Largest Dementia (BOLD) Infrastructure for Alzheimer's Act (Public Law
115-406) and to strengthen the Healthy Brain Initiative (HBI) at CDC.
Specifically, we request total program funding of $20 million for BOLD
Act activities and a total of $17 million for HBI.
The recently-enacted BOLD Act would strengthen the public health
infrastructure across the country by implementing Alzheimer's and
related dementias interventions focused priorities such as increasing
early detection and diagnosis, reducing risk, preventing avoidable
hospitalizations, reducing health disparities, meeting the needs of
caregivers and supporting care planning management. Activities
supported by the requested $20 million would include establishing
Alzheimer's Disease and Related Dementias Public Health Centers of
Excellence; awarding grants, contracts or cooperative agreements to
public health departments to implement public health interventions for
Alzheimer's disease and related dementias; and increasing the analysis
and timely reporting of data related to cognitive decline and
Alzheimer's disease and related dementias.
The proposed $17 million (+$11.5 million above fiscal year 2019)
for HBI would be used to (a) broaden nationwide implementation of the
Public Health Road Maps, with a particular focus on reducing
disparities and addressing high burden populations; (b) establish a
National Public Health Alzheimer's Implementation Library to provide
resources and knowledge support to States as they implement the Public
Health Road Maps; (c) convene regional action institutes to bring
together different departments, like transportation, aging, housing,
hospitals, health systems and payers, to coordinate and work together
on executing tailored Alzheimer's action plans in their communities;
and (d) enable collection of cognitive decline and caregiving data
through the Behavioral Risk Factor Surveillance System (BRFSS) in all
50 States, DC, and Puerto Rico over a 2-year period.
Proposed Report Language:
centers for disease control and prevention
chronic disease prevention and health promotion
``Alzheimer's Disease.--The Committee recommendation includes an
additional $20,000,000 to implement the Alzheimer's and related
dementias public health programs authorized in Public Law 115-406, and
includes $17,000,000 to strengthen the Healthy Brain Initiative,
including implementation of the Healthy Brain Initiative Public Health
Road Maps. The Committee recommendation includes sufficient funding to
establish Alzheimer's Disease and Related Dementias Public Health
Centers of Excellence; award grants, contracts or cooperative
agreements to public health departments to implement public health
interventions for Alzheimer's disease and related dementias; and
increase the analysis and timely reporting of data related to cognitive
decline and Alzheimer's disease and related dementias.
With this additional significant investment in addressing
Alzheimer's and related dementias, the Committee strongly believes the
issue should be a higher priority at CDC. Alzheimer's is one of the
most prevalent chronic diseases facing our Nation and the Committee
urges CDC to elevate Alzheimer's and related dementias to the Division
level as with other major chronic diseases.
Office of the Secretary, General Departmental Management $250,000
for the Advisory Council on Alzheimer's Research, Care and Services:
The Alzheimer's Association respectfully requests $250,000 for the
Advisory Council on Alzheimer's Research, Care and Services.
The bipartisan National Alzheimer's Project Act (Public Law 111-
375) requires the Secretary of HHS, in collaboration with the Advisory
Council on Alzheimer's Research, Care and Services (Advisory Council),
to create and maintain an annually updated National Alzheimer's Plan.
The Advisory Council, made of both Federal members and expert non-
Federal members, is an integral part of the planning process as it
advises the Secretary in developing the annual National Alzheimer's
Plan, makes recommendations to the Secretary and Congress, and assists
in coordinating the work of Federal agencies involved in Alzheimer's
research, care and services.
Administration on Aging/Administration for Community Living $2
million for the National Alzheimer's Call Center: The Alzheimer's
Association respectfully requests $2 million for the National
Alzheimer's Call Center through the Aging Network Support Activities
program at the Administration on Aging. These funds would supplement
the Alzheimer's Association's nearly $5 million annual commitment of
private resources to carry out this critical activity for families
dealing with an Alzheimer's diagnosis.
The National Alzheimer's Call Center provides 24-hour, 7 day a
week, year-round telephone support, crisis counseling, care
consultation and information and referral services in over 200
languages, for persons with Alzheimer's disease, their family members
and informal caregivers. Trained professional staff and master's level
mental health professionals (social workers and counselors) are
available at all times. In the twelve month period ending June 30,
2018, the 24/7 Helpline handled over 315,000 calls and emails through
its National Contact Center and 77 chapters. These resources will go
towards handling the increase in calls and complex consultations,
continuing process improvements and ensuring the National Contact
Center (or 24/7 Helpline) is efficient and effective.
Proposed Report Language:
Within funding for the Aging Network Support Activities, the
Committee recommends $2,000,000 to continue the National Alzheimer's
Call Center.
$14.7 Million for the Alzheimer's Disease Initiative (ADI).--The
Alzheimer's Association respectfully requests $14.7 million for the ADI
administered by the Administration for Community Living (ACL). This
program provides caregiver support, provider education and public
awareness for individuals with Alzheimer's disease and their
caregivers. The ADI expands home- and community-based caregiver
services, which have shown to be less expensive than hospital
admissions and conducts outreach activities to raise awareness.
$13.4 Million for the Alzheimer's Disease Supportive Services
Program (ADSSP).--The Alzheimer's Association respectfully requests
$13.4 million for the ADSSP administered by the Administration for
Community Living (ACL). The fiscal year 2020 funding request will allow
ACL to continue to support grants that provide direct services to
persons with Alzheimer's disease and their family caregivers.
______
Prepared Statement of the Alzheimer's Foundation of America
national institutes of health
AFA is extremely grateful to the Senate Appropriations Committee
for approving an increase in funding for Alzheimer's disease research
at NIH for fiscal year 2019. The $425 million in additional resources
for fighting Alzheimer's disease and related dementias at NIH, coupled
with other increases in recent past fiscal years, will greatly increase
our chances that promising research gets funded as we move closer to
the goal of finding a cure or disease-modifying treatment by 2025 as
articulated in the National Plan to Address Alzheimer's Disease.
Yet, just last month we heard news of another high profile failure
of a stage III Alzheimer's drug trial, indicating that 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 $350
million, for a total of approximately $2.7 billion for Alzheimer's
disease clinical research at NIH in fiscal year 2020.
AFA also urges the Subcommittee appropriate at least $41.6 billion
for total NIH spending in fiscal year 2020, a $2.5 billion increase
over the NIH's program level funding in fiscal year 2019, as
recommended by the Ad Hoc Group for Medical Research. This funding
level would allow for meaningful growth above inflation in the base
budget that would expand NIH's capacity to support promising science in
all disciplines. It also would ensure that funding from the Innovation
Account established in the 21st Century Cures Act would supplement the
agency's base budget, as intended, through dedicated funding for
specific programs.
centers for disease control and prevention
Last year Congress passed, and the President signed, the Building
Our Largest Dementia (BOLD) Infrastructure for Alzheimer's Act which
calls Centers for Disease Control and Prevention (CDC) to establish
Centers of Excellence in Public Health Practice dedicated to promoting
Alzheimer's disease management and caregiving interventions, as well as
educating the public on Alzheimer's disease and brain health, will
establish Alzheimer's disease a public health issue increasing American
awareness and care training around the disease. To fund BOLD Act
initiatives at CDC, AFA is requesting $20 million in appropriations as
called for in the statute.
administration on community living
AFA is requesting a $50 million increase for vital ACL programming
across-the-board, including a $6.5 million increase to the Alzheimer's
Disease Program for a total funding of $30 million in fiscal year 2020.
In addition, AFA is requesting that the following amounts be allocated
to these programs that directly impact those living with dementia:
--National Family Caregiver Support Program (NFCSP): NFCSP provides
grants to States and territories, based on their share of the
population aged 70 and over, to fund a range of supportive
services that assist family and informal caregivers in caring
for those with dementia at home for as long as possible, thus
providing a more person-friendly and cost-effective approach to
institutionalization. AFA urges that an additional $32.8
million (for a total of $214 million) be appropriated in fiscal
year 2020 to support this important program.
--RAISE Act Family Caregiver Advisory Board: AFA recommends that the
Subcommittee allocate $300,000 fund and staff a Family
Caregiver Advisory Board to develop a national family caregiver
plan as envisioned under the RAISE Family Caregiver Act.
--Lifespan Respite Care Program (LRCP): AFA urges the Committee to
allocate $20 million to LRCP in fiscal year 2020. LRCP provides
competitive grants to State agencies working with Aging and
Disability Resource Centers and non-profit State respite
coalitions and organizations to make quality respite care
available and accessible to family caregivers regardless of age
or disability.
AFA thanks the Subcommittee for the opportunity to present its
recommendations and looks forward to working with you through the
appropriations process. Please contact me at [email protected] or
Eric Sokol, AFA's vice president of public policy, at
[email protected], if you have any questions or require further
information.
[This statement was submitted by Charles J. Fuschillo, Jr.,
President and Chief Executive Officer, Alzheimer's Foundation of
America.]
______
Prepared Statement of Alzheimer's Los Angeles
Dear Chairman Blunt:
Alzheimer's Los Angeles supports a $6,000,000 increase in funding
of for the Administration of Community Living's Alzheimer's Disease
Programs Initiative (ADPI) for a total of $29,500,000. This program
supports and promotes the development and expansion of dementia-capable
home and community-based service long-term services and support systems
in States and communities. In the State of California, for over 25
years, ADPI grants have funded initiatives that have built
infrastructure to serve families in diverse communities, created
linguistically and culturally appropriate caregiver education tools,
and most recently, transformed publicly-funded healthcare systems to
make them more dementia capable.
Our organization has served the greater Los Angles area including
Los Angeles, San Bernardino, and Riverside counties for over 36 years,
providing care, support, education, and resources that are culturally
competent and linguistically accessible. We focus heavily on serving
diverse communities because of the disproportionate impact of
Alzheimer's on communities of color. In Los Angeles County, we expect
the number of Latinos and Asians living with Alzheimer's to double by
2030, and the number of African-Americans to increase by over 30
percent. Nationally, the number of Latinos living with dementia is
expected to increase more than nine times--with over 3.5 million living
with the disease by 2060. ADPI funds have allowed the State of
California and Alzheimer's Los Angeles, as the State's partner, to lead
in the development and implementation of programs focused on improving
outreach and service delivery to older adults with dementia and their
family caregivers in diverse communities. This ground-breaking work has
often impacted care across the Nation.
Building Infrastructure to Serve Ethnically Diverse Families Living
with Dementia
The State's first program funded through this program was El
Portal, an award-winning collaboration between the State of California,
Alzheimer's Los Angeles and community-based organizations serving older
Latinos. The collaborative created a dementia care network in East and
Southeast Los Angeles, two predominantly Latino communities. This
network assessed the community's needs, identified barriers to access,
and developed culturally competent services in response to these needs.
El Portal was highly successful, not only increasing awareness about
dementia in the Latino/Hispanic community, but also in creating and
connecting families to culturally and linguistically appropriate
services, including five adult day care programs, seven caregiver
support groups, two legal clinics, two care management sites, and a
Spanish-speaking diagnostic center.
Building on the success of El Portal, the ADPI grant funds also
allowed California to create a similar program reaching underserved
African Americans in Los Angeles where our work represented the first-
time community education had been directed toward reducing the high
risk of stroke and vascular dementia in this population. The African-
American-focused work on reducing risk for brain disease produced some
of the Nation's first educational materials for this population and
later prompted the CDC to invest funds in developing material and
messaging on brain health in African Americans.
Subsequent grants enabled California to expand access to services
by Asian Pacific Islander communities--building dementia care networks
to serve Chinese, Japanese and Vietnamese-American people living with
dementia, and later expanding to reach Korean and Filipino communities.
These ADPI- funded efforts proved so successful they were
replicated in a number of other geographic regions including Puerto
Rico, Seattle, New Mexico, San Diego and the San Francisco Bay Area.
Developing Caregiver Education Tools for Underserved Families
Unpaid family caregivers are unsung heroes of our Nation's long-
term care system-often providing selfless care while facing increased
financial burden, emotional stress, and negative impacts on their
health. Investing in education, support, and resources for family
caregivers is an integral part of Alzheimer's care and services.
Funding through the ADPI allowed California to adopt and deliver the
evidence-based caregiver education program, Savvy Caregiver, which
teaches family members basic knowledge, skills and attitudes needed to
be effective caregivers. Among other benefits, this program that has
been proven in randomized controlled studies to reduce caregiver
depression and anxiety and improve tolerance of the challenging
behaviors of dementia. ADPI funds enabled California to deliver this
program to over 4,000 ethnically diverse family caregivers. In
addition, in partnership with the State of Texas, Alzheimer's Los
Angeles piloted the Cuidando Con Respeto program, a linguistically and
culturally adapted version of Savvy Caregiver for the Latino community,
which has been recognized by the Rosalyn Carter Caregiving Institute
and used in multiple States.
Subsequently, ADPI funds were used to enable California to fill in
other gaps in the service delivery network for people living with
dementia and their family caregivers including development of a program
for people with dementia who live alone ; development of supports for
people with intellectual disabilities who develop dementia; and, lower
literacy multi-lingual education programs and materials to help
families with 6th to 8th grade reading levels learn how to better
manage the behavioral symptoms of dementia.
Transforming Health Care Systems
Most recently, ADPI funding to California has been key to an effort
to transform the State's healthcare system, improving supports provided
to people with dementia who are dually eligible for Medicare and
Medicaid. The award-winning Dementia Cal MediConnect Project engaged
the State of California, ten health plans, and three local Alzheimer's
organizations in a partnership jointly led by the California Department
of Aging and Alzheimer's Los Angeles. To date, this ground-breaking
effort has improved health plans' systems of care to help assure that
they detect and screen enrollees with dementia, and engage family
caregivers in care planning, disease education and supports. The
Project also increased health plans' workforce capacity to serve people
with dementia by training over 550 care managers. Some of the results
of this ADPI supported efforts include:
--A State mandate that the health plans' Health Risk Assessments ask
about cognitive status and have Dementia Care Specialists on
staff;
--Health plan adoption of validated cognitive impairment screening
tools and family caregiver assessment tools;
--Identification, assessment, support, and engagement of family
caregivers; and,
--Better connection of families and people living with the disease to
home and community supports.
With ADPI support, California's effort to improve healthcare is now
being replicated in Texas and other States have adopted tools and
strategies from this Project.
In summary, over the past 25 years, the Federal Alzheimer's
program, now known as the ADPI, has transformed the delivery of
dementia care in California, particularly for the State's most
vulnerable populations--the poor, the less literate, and those with
linguistic and cultural barriers to accessing care. Furthermore, the
work created in California has influenced care across our Nation.
We encourage the Labor Health and Human Services, Education, and
Related Agencies Subcommittee to robustly fund this program. Funding of
$29,500,000 will ensure that families impacted by Alzheimer's and other
dementias are not only supported, but connected with culturally and
linguistically appropriate resources, services, and supports from
within their communities. This is the primary Federal program focused
on the development of home and community-based long-term care services
and supports that can help families keep their loved ones in the
preferred home environment.
I thank you for this opportunity to speak about the impact and
importance of the Alzheimer's Disease Program Initiative and hope that
by sharing the impact of this program on our State, I can motivate you
to preserve its funding and integrity.
Sincerely.
[This statement was submitted by Debra L. Cherry, Ph.D., Executive
Vice
President, Alzheimer's Los Angeles.]
______
Prepared Statement of the American Academy of Family Physicians
The American Academy of Family Physicians (AAFP) appreciates this
opportunity to present our fiscal year 2020 recommendations. As the
Nation's largest medical association of primary care physicians, we are
committed to improving the health of patients, families, and
communities. We urge the Committee to provide appropriations for the
agencies and programs in the Department of Health and Human Services
(HHS) which our members and their patients rely on for access to care,
the research to improve efficacy and safety, essential family physician
workforce development programs, and disease prevention and health
promotion efforts. On behalf of the AAFP, representing 131,400 family
physicians and medical students, I recommend that the Committee restore
the discretionary budget authority for the Health Resources and
Services Administration (HRSA) to the fiscal year 2010 level adjusted
for inflation of $8.56 billion; provide $460 million in budget
authority for the Agency for Healthcare Research and Quality (AHRQ); at
least level-fund at $3.7 billion the Centers for Medicare & Medicaid
Services (CMS) for program management; and include $7.8 billion for the
Centers for Disease Control and Prevention (CDC).
Funding for these agencies is critical to support a strong
foundation of primary care in this country. An abundance of research
has clearly shown that foundational family medicine and primary care is
essential to improving the health of our Nation. For example, a recent
JAMA Internal Medicine study published February 18, 2019 found that
every 10 additional primary care physicians per 100,000 population was
associated with a 51.5-day increase in life expectancy--an increase
that was more than 2.5 times that associated with a similar increase in
non-primary care physicians. The inverse is also true and starker: as
the density of primary care physicians decreases (11 percent decline
across 10 years), there is a predictable increase in the number of
deaths due to preventable causes. The cost of inaction will be an
increase in morbidity and higher premature mortality. The article also
noted that investment in ``the National Health Service Corps, the
Teaching Health Centers program, and Title VII programs, also offer the
opportunity to increase the density of primary care physicians,
especially in underserved areas.'' This pressing need for a greater
investment in programs to support primary care and family medicine
motivates the AAFP to strongly urge the Committee to prioritize the
following programs within those HHS agencies:
National Health Service Corps--$120 Million in Discretionary
Funding.--The National Health Service Corps (NHSC), administered by
HRSA, plays a vital role in addressing the challenge of regional health
disparities arising from physician workforce shortages by offering
financial assistance to meet the workforce needs of communities
designated as health professional shortage areas. We support the
continuation of the $120 million the Committee provided in the fiscal
year 2019 law to expand substance use disorder (SUD) treatment. The
AAFP is committed to supporting the objectives of the NHSC in assisting
communities in need of family physicians for their comprehensive
primary care including appropriate SUD treatment. The NHSC trust fund
extended by the Bipartisan Budget Act (Public Law 115-123) expires at
the end of fiscal year 2019, and we are working with the broad NHSC
stakeholder community to strongly urge Congress to extend it.
Title VII, Sec. 747 Primary Care Training & Enhancement--$59
Million.--The AAFP is calling for an increase of $10 million for the
Primary Care Training & Enhancement program authorized by Title VII, of
the Public Health Service Act of 1963 and administered by HRSA.
Rural Residency Planning and Development Program--$15 Million.--The
HRSA Rural Residency Planning and Development Program supports the
development of new rural residency programs or Rural Training Tracks in
family medicine, internal medicine and psychiatry. Most of the 62
million people living in a rural community or county depend on a family
physician for their healthcare. The AAFP welcomes this important
initiative to address rural training challenges as a way to reduce
healthcare disparities facing rural communities.
Centers for Disease Control and Prevention--$7.8 Billion.--Family
physicians are dedicated to treating the whole person to integrate the
care of patients of all genders and every age. In addition to
diagnosing and treating illness, they provide preventive care,
including routine checkups, health risk assessments, immunization and
screening tests, and personalized counseling on maintaining a healthy
lifestyle. CDC Chronic Disease Prevention and Health Promotion funding
helps with efforts to prevent and control chronic diseases and
associated risk factors and reduce health disparities. We ask that the
Committee provides at least $1.2 billion for CDC Chronic Disease
Prevention and Health Promotion.
The CDC also plays a pivotal role in increasing rates of
immunization. Vaccines have proven to be a public health success by
reducing the incidence of infectious disease and nearly eliminating
many deadly threats. Recent outbreaks point to the need to remain
vigilant regarding our Nation's infectious disease efforts, especially
those which are vaccine preventable. The AAFP supports programs, such
as the CDC's National Center for Immunization and Respiratory Diseases
(IRD) 317 immunization program, which provides surveillance,
prevention, and outbreak support.
We request at least $799 million for CDC's IRD line. Within the
Emerging and Zoonotic Infectious Diseases Vector-borne Diseases line,
the AAFP urges increased funding to reduce the risk of tick-borne
disease infections and to develop reliable diagnostic tests for tick-
borne diseases which are frequently part of a differential diagnosis in
primary care. The AAFP appreciates that the Committee clarified the
CDC's authority to conduct research on the causes of gun violence, and
we strongly urge that you provide the CDC with $50 million in fiscal
year 2020 to conduct public health research into firearm morbidity and
mortality prevention.
Agency for Healthcare Research and Quality--$460 Million in Budget
Authority.--Primary care research, a core function of the Agency for
Healthcare Research and Quality (AHRQ) translating science into
improved patient care, transforming healthcare practice to meet patient
and population needs, evaluating innovations to provide the best
healthcare to patients, and engaging patients, communities, and
practices to improve health, has suffered greatly from funding cuts.
The shuttering of the National Guidelines Clearinghouse used by
physicians, insurers, and health systems to access the latest evidence-
based guidance about best medical practices was a direct result of
inadequate Federal funding. Without increased funding, the Practice-
based Research Networks (PBRN) which cultivate, conduct, support,
promote, disseminate, and advocate for primary care research in
practice-based settings is similarly threatened. The AAFP strongly
urges the Committee to increase AHRQ funding in order to protect the
PBRN and restore the research initiatives to optimize care for patients
with multiple chronic conditions as well as funding for AHRQ's Center
for Primary Care Research.
Office of Rural Health Policy--$305.9 Million.--The programs
administered by HRSA's Office of Rural Health Policy work to reduce the
unique obstacles faced by physicians and patients in rural areas. Data
from the Census Bureau's American Community Survey shows that 19.3
percent of the population (about 60 million people) lives in rural
areas, but CDC has found that patients in rural areas tend to have
shorter life spans, and access to healthcare is one of several factors
contributing to rural health disparities. Access to high quality
healthcare services for rural Americans continues to be dependent upon
an adequate supply of rural family physicians who perform about 42
percent of the visits that Americans in rural areas make to their
physicians each year. The AAFP strongly supports an increased
investment in the Office of Rural Health Policy to $305.9 million to
support Rural Outreach Network Grants, Rural Health Research, State
Offices of Rural Health, Rural Opioid Reversal Grants, Rural Hospital
Flexibility Grants, and Telehealth as recommended by the National Rural
Health Association.
Title X--$286.5 Million.--The AAFP supports continued funding for
the Title X Federal grant program dedicated to providing women and men
with comprehensive family planning and related preventive health
services. The AAFP strongly recommends adequate funding to support
Title X clinics which offer necessary screening for sexually
transmissible infections, cancer screenings, HIV testing, and
contraceptive care of $286.5 million in fiscal year 2020.
Centers for Medicare & Medicaid Services Program Management--$3.7
Billion.--CMS plays a crucial role in the healthcare of over 125
million Americans enrolled in Medicare, Medicaid, and the Children's
Health Insurance Program and also regulates private insurance coverage
in the Marketplace. The AAFP recognizes the need for CMS to have
adequate resources to manage these programs at a time when the agency
continues to implement MACRA which prompted the ongoing transformation
of the Medicare program to a system based on quality and healthy
outcomes. The AAFP recommends that the Committee provide CMS with at
least $3.7 billion for program management to allow the agency to manage
the complex implementation of MACRA.
[This statement was submitted by John Cullen, MD, FAAFP, President,
American Academy of Family Physicians.]
______
Prepared Statement of the American Academy of Neurology
Dear Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee:
The American Academy of Neurology (AAN), the world's largest
neurology specialty society representing over 36,000 neurologists and
clinical neuroscience professionals, is strongly committed to improving
the care and outcomes of persons with neurologic illness by advancing
understanding of the brain and nervous system through medical research.
The AAN requests increasing funding for the National Institutes of
Health (NIH) to at least $41.6 billion in fiscal year 2020, an increase
of $2.5 billion, including a total of $500 million to the Brain
Research through Advancing Innovative Neurotechnologies (BRAIN)
Initiative.
neuroscience research is critical
The NIH is the world's leading funder of basic biomedical research,
providing vital discoveries that can help lead to treatments and cures
for neurologic diseases. Decades of basic, translational, and clinical
research are necessary to develop lifesaving therapies. For example,
sixty years of government funded research led to using the fava bean to
develop Levodopa, the single most effective agent in the management of
Parkinson's disease. Today Levodopa and other movement disorder
therapies discovered through research allow Parkinson's patients to
manage their symptoms. However, funding for research is a fraction of
the costs to treat neurologic disease, and we are still working towards
a cure. To further realize the potential of neurology-related NIH
research to continue this forward momentum, we request the NIH receives
at least $41.6 billion in fiscal year 2020.
brain initiative
The AAN has supported the BRAIN Initiative since its inception in
2013 and recognizes the utmost importance of developing a deeper
knowledge about the brain to more effectively treat neurologic disease.
This multidisciplinary collaboration involving public and private
partners is working to map circuits of the brain, measure electrical
and chemical activity, and understand how their interplay creates
unique cognitive and behavioral capabilities. Numerous AAN members
currently conduct research funded by the BRAIN Initiative and
appreciate the grant program's unique prioritization of innovation. For
example, one BRAIN Initiative grant led to the development of a new
technology that uses an electrode implanted in the brain to sense when
a seizure is about to happen and responds with a small electrical
current to prevent the seizure.
The Committee has steadily increased funding to ensure the success
of this program. Funding for the BRAIN Initiative is supported in part
by funds to the NIH Innovation Account which was created by the 21st
Century Cures Act. For fiscal year 2020, the NIH Innovation Account
designates $140 million for the BRAIN Initiative. In keeping with the
Committee's commitment to fully fund this program, we request that a
total of $500 million be appropriated to the program in fiscal year
2020, which would include $140 million from the NIH Innovation account
and $360 million in further appropriations to NIH.
We appreciate your consideration of our funding requests and thank
you for your ongoing commitment to medical research.
[This statement was submitted by Derek Brandt, Director,
Congressional Affairs American Academy of Neurology.]
______
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 2020 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 Gun Violence Prevention Research,
$60 million for Child Abuse Prevention and Treatment Act Plans of Safe
Care Grants, $22.334 million for Emergency Medical Services for
Children, $10 million for the Youth Prevention and Recovery Initiative
(SAMHSA), $10 million for Pediatric Mental Health Care Access Grants,
$166.14 million for National Center for Birth Defects and Developmental
Disabilities, $3 million for Reducing Underage Drinking Through
Screening and Brief Intervention, $5 million for Screening and
Treatment for Maternal Depression, and $35 million for Lead Poisoning
Prevention.
gun violence prevention research--cdc
Fiscal Year 2020 Request: $50 Million; Fiscal Year 2019 Level: N/A
In 2017, there were over 39,000 U.S. firearm-related fatalities.\1\
federally funded public health research has a proven track record of
reducing public health-related deaths, whether from motor vehicle
crashes, smoking, or Sudden Infant Death Syndrome. This same approach
should be applied to increasing gun safety and reducing firearm-related
injuries and deaths, including suicides, and CDC research will be as
critical to that effort as it was to these previous public health
achievements. The dearth of research on how best to prevent morbidity
and mortality from firearm-related injuries and deaths makes it
difficult to implement a public health approach to addressing this
public health problem.
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\1\ https://www.cdc.gov/nchs/pressroom/sosmap/firearm_mortality/
firearm.htm.
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child abuse prevention and treatment act (capta)
plans of safe care grants--acf
Fiscal Year 2020 Request: $60 Million; Fiscal Year 2019 Level: $60
Million
The AAP appreciates the $60 million designated for CAPTA Plans of
Safe Care Grants in fiscal year 2019. CAPTA is the only Federal law
dedicated to primary prevention of child abuse. CAPTA requires States
to refer families to child welfare services if an infant is identified
at birth as affected by prenatal substance exposure, withdrawal
symptoms, or a Fetal Alcohol Spectrum Disorder. Plans of safe care
follow the best evidence for treating maternal substance use, including
early identification and screening, appropriate treatment, consistent
hospital screening of mothers and their infants, consistent hospital
notifications to the child welfare system, and information sharing and
monitoring across systems. These expanded requirements represent a
major opportunity to address the child health impact of the opioid
epidemic.
emergency medical services for children--hrsa
Fiscal Year 2020 Request: $22.334 Million; Fiscal Year 2019 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
fiscal year 2020. Established by Congress in 1984 and last reauthorized
in 2015 for 5 years, the EMSC Program is the only Federal program that
focuses specifically on improving the pediatric components of the
emergency medical services (EMS) system. EMSC aims to ensure that State
of the art emergency medical care for the ill and injured child or
adolescent pediatric services are well integrated into an EMS system
backed by optimal resources, and that the entire spectrum of emergency
services is provided to children and adolescents no matter where they
live, attend school, or travel.
youth prevention and recovery initiative--samhsa
Fiscal Year 2020 Request: $10 Million; Fiscal Year 2019 Level: $10
Million
Access to treatment for individuals experiencing opioid use
disorder (OUD) is critical, particularly given that individuals
suffering from OUD have an estimated 0.65 percent risk of fatal
overdose annually. The use of medication-assisted treatment (MAT) has
been shown to be a relatively safe and effective treatment for OUD and
improves success rates for retaining those seeking treatment. However,
access to MAT for adolescents and young adults remains problematic,
with recent studies showing that this population has a low likelihood
of receiving MAT for OUD. The Youth Prevention and Recovery Initiative
creates a competitive grant program at the Department of Health and
Human Services (HHS) for healthcare providers and other entities to
create substance use disorder treatment and prevention programs that
include the appropriate use of MAT for adolescents and young adults.
pediatric mental health care access grants--hrsa
Fiscal Year 2020 Request: $10 Million; Fiscal Year 2019 Level: $10
Million
The AAP appreciates the $10 million in fiscal year 2019 and urges
Congress to maintain funding at $10 million in fiscal year 2020 for the
Pediatric Mental Health Care Access Grants established in the 21st
Century Cures Act. This grant program supports the development of new
statewide or regional pediatric mental healthcare telehealth access
programs, as well as the improvement of already existing programs.
Research shows pervasive shortages of child and adolescent mental/
behavioral health specialists throughout the U.S. Integrating mental
health and primary care has been shown to substantially expand access
to mental healthcare, improve health and functional outcomes, increase
satisfaction with care, and achieve costs savings.
national center for birth defects and developmental disabilities--cdc
Fiscal Year 2020 Request: $166.14 Million; Fiscal Year 2019 Level:
$155.56 Million
The AAP applauds the $15 million increase in fiscal year 2019 for
the National Center for Birth Defects and Developmental Disabilities
(NCBDDD), a center within CDC that seeks to promote the health of
babies, children, and adults and enhance the potential for full,
productive living. According to the CDC, birth defects affect 1 in 33
babies and are a leading cause of infant death in the United States.
The center 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. The center can also bolster newborn
screening surveillance to improve treatment for children.
reducing underage drinking through screening and
brief intervention--samhsa
Fiscal Year 2020 Request: $3 Million; Fiscal Year 2019 Level: Not
Funded
Adolescent substance use, including opioid use and underage
drinking poses the risk of immediate, devastating consequences and the
potential for long-term negative effects. New research clearly makes
the case that the developing brains of adolescents make them
particularly vulnerable to addiction. Opioid and alcohol use among
adolescents is associated with violence, decreased academic
performance, and risky sexual behaviors. Screening, brief intervention,
and referral to treatment (SBIRT) specifically developed for the
pediatric population has been shown to delay or reduce alcohol
involvement in this population, and multiple agencies have recommended
that SBIRT be a part of routine healthcare screening. This program
provides grants to train pediatric providers to use screening and brief
intervention to reduce underage drinking.
screening and treatment for maternal depression--hrsa
Fiscal Year 2020 Request: $5 Million; Fiscal Year 2019 Level: $5
Million
The AAP thanks the committee for providing $5 million in funding in
fiscal year 2019 for the Screening and Treatment for Maternal
Depression grant program authorized in the 21st Century Cures Act.
These grants will serve to establish, improve, or maintain programs
that increase screening, assessment, and treatment services for
maternal depression for women who are pregnant or have given birth
within the preceding 12 months. Maternal depression can lead to
increased costs of medical care, inappropriate medical care, child
abuse and neglect, discontinuation of breastfeeding, family
dysfunction, and may adversely affect early brain development in
children.
lead poisoning prevention program--cdc
Fiscal Year 2020 Request: $35 Million; Fiscal Year 2019 Level: $35
Million
The Academy appreciates the $35 million in fiscal year 2019 for the
Lead Poisoning Prevention Program, as there is no safe level of lead
exposure in children. Lead damage can be permanent and irreversible,
leading to increased likelihood for behavior problems, attention
deficit and reading disabilities, and a host of other impairments to
developing cardiovascular, immune, and endocrine systems. Today,
approximately 500,000 children are exposed to unacceptably high levels
of lead, and prevention efforts are critical to protect children from
its harmful effects. Adequate funding for prevention efforts can help
screen more children, identify those in need of follow-up, and help
reduce the impact of lead on children.
global immunization--polio and measles/other--cdc
Fiscal Year 2020 Request: $226 Million Including $176 Million for Polio
and $50 Million for Measles/Other; Fiscal Year 2019 Level: $226
Million Including $176 Million for Polio and $50 Million for
Measles/Other
Vaccines are one of the most cost-effective and successful public
health solutions available, saving the lives of two to three million
children each year. Vaccines are among the safest medical products
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, one of the top five diseases
killing children, declined by 79 percent between 2000 and 2015 thanks
to expanded immunization, saving an estimated 20.3 million lives. A
global immunization campaign has reduced the number of polio cases by
more than 99 percent since 1988. However, until the world is free of
measles and polio, all children, even those in the United States,
remain at risk. From January 1 to April 11, 2019, 555 individual cases
of measles have been confirmed in 20 States, in part due to
unvaccinated travelers importing the virus from parts of the world
where it remains common. Only two countries had indigenous transmission
of wild polio virus in 2018: Afghanistan and Pakistan. We must complete
polio eradication or face a potential global resurgence, which could
result in as many as 200,000 cases of polio annually within a decade.
There are many ways Congress can help meet children's needs and
protect their health and well-being. Adequate funding for children's
health programs is one of them. The American Academy of Pediatrics
looks forward to working with Members of Congress to prioritize the
health of our Nation's children in fiscal year 2020 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 Kyle Yasuda, MD, FAAP, President,
American Academy of Pediatrics.]
______
Prepared Statement of the American Alliance of Museums
Chairman Blunt, Ranking Member Murray, and members of the
subcommittee, thank you for the opportunity to submit this testimony.
My name is Laura Lott and I serve as President and CEO of the American
Alliance of Museums (AAM). I respectfully request that the subcommittee
make a renewed investment in museums in fiscal year 2020. I urge you to
provide the Office of Museum Services (OMS) within the Institute of
Museum and Library Services (IMLS) with $42.7 million, the $8 million
increase recently approved by the House Appropriations Committee. This
small program is a vital investment in protecting our Nation's cultural
treasures, educating students and lifelong learners, and bolstering
local economies around the country.
Representing more than 35,000 individual museum professionals and
volunteers, institutions--including aquariums, art museums, botanic
gardens, children's museums, cultural museums, historic sites, history
museums, maritime museums, military museums, natural history museums,
planetariums, presidential libraries, science and technology centers,
and zoos--and corporate partners serving the museum field, the Alliance
stands for the broad scope of the museum community.
Museums are economic engines and job creators: According to Museums
as Economic Engines: A National Report, U.S. museums support more than
726,000 jobs and contribute $50 billion to the U.S. economy per year.
The economic activity of museums generates more than $12 billion in tax
revenue, one-third of it going to State and local governments. For
example, the total financial impact that museums have on the economy in
Missouri is $852 million, including 13,653 jobs. For Washington it is a
$1.01 billion impact supporting 14,145 jobs. This impact is not limited
to cities: more than 25 percent of museums are in rural areas.
Museums spend more than $2 billion yearly on education activities;
the typical museum devotes 75 percent of its education budget to K-12
students, and museums receive approximately 55 million visits each year
from students in school groups. Museums help teach the State and local
curricula, tailoring their programs in math, science, art, literacy,
language arts, history, civics and government, economics and financial
literacy, geography, and social studies. Students who attend a field
trip to an art museum experience an increase in critical thinking
skills, historical empathy, and tolerance. For students from rural or
high-poverty regions, the increase is even more significant. Children
who visited a museum during kindergarten had higher achievement scores
in reading, mathematics, and science in third grade than children who
did not. Children who are most at risk for deficits and delays in
achievement also see this benefit. Museums have long served as a vital
resource to homeschool learners. For the approximately 1.8 million
students who are homeschooled--a population that has increased by 60
percent in the past decade--museums are quite literally the classroom.
It is not surprising that in a 2017 public opinion survey, 97 percent
of respondents agreed that museums were educational assets in their
communities. The results were statistically identical regardless of
political persuasion or community size.
IMLS is the primary Federal agency that supports museums, and 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. The fiscal year 2019 appropriation
of $34.7 million, while a most welcome funding increase, still falls
below its recent high of $35.2 million in fiscal year 2010. We applaud
the 41 bipartisan Senators who wrote to you in support of fiscal year
2020 OMS funding.
Here are just two examples of how IMLS funding was used in 2018 to
support museums' work in your communities:
--The University of Missouri in Saint Louis, Missouri received a
$49,979 National Leadership Grant to support a leadership team
from the university to partner with nine cultural heritage
organizations, including museums, to prototype a collaborative
model for internships that offers peer support and fosters
mentorship to students from faculty and site coordinators. The
project team will bring students, faculty and site supervisors
together for a 4-5 day project team kick-off meeting to design
a micro-internship program allowing diverse students to
participate in 2-3 week fully-paid internships at heritage
sites across the U.S. For two to three weeks, six to ten
students will work in pairs at pre-selected internship sites
with the support of mentors. The project activities will result
in a curriculum and guide for future micro-internships that
attract diverse students into the heritage museum workforce
with additional opportunities and added career-building
potential.
--The Woodland Park Zoo in Seattle, Washington received a $211,379
Museums for America-Community Anchors award to provide
specialized training for zoo staff and volunteer mentors to
design an inclusive volunteer program and remove access
barriers for individuals with disabilities. The zoo will work
with an advisory council composed of disability partner
organizations and community members to provide expert guidance
on the creation of an accessible and inclusive environment, the
development of a training manual, modifications to
institutional volunteer policies and procedures, and the
recruitment of volunteers. A newly hired inclusion coordinator
will develop and conduct a series of trainings for zoo staff
and volunteers. The sustainable inclusive training model
created through this project will be applicable to other
cultural organizations attempting to reduce barriers for
participation for all audiences and expand their volunteer
programs.
In addition to these examples, I want to share with you an excerpt
from the powerful live public witness testimony provided on April 9,
2019 to the House Appropriations Subcommittee on Labor, Health and
Human Services, Education, and Related Agencies by a wintess on AAM's
behalf:
``My name is Mairead Bernadita Brennan. I am one of the many
beneficiaries of the Office of Museum Services' funded
``Evolutions After School Program'' at the Yale Peabody Museum
of Natural History in New Haven, Connecticut. The Evolutions
Afterschool Program is a free science and college-focused
program that provides academic support and science career
exploration for 120 students from New Haven and West Haven
public school districts. As an aspiring first generation
college student, the experience was invaluable since it exposed
me to different science careers I would not have otherwise
known about. Even more importantly, it normalized the idea of
pursuing those careers myself. The program also introduced me
to the amazing Peabody Museum staff and high school friends
with whom I developed a supportive relationship with over those
4 years.
Every year we were able to partake in science activities, field
trips to colleges and universities, and learned to conduct
research to produce our own public science exhibition. We had
tremendous opportunities to visit places both inside Yale and
also within the broader network of museum education programs.
Evolutions students and I attended the Mid-Atlantic Youth
Alliance (M.A.Y.A.) conference in the Poconos Mountains, which
focused on Outdoor Education. We learned about orienteering,
constellations, and biodiversity. Evolutions also visited the
Maritime Aquarium in Norwalk where we were able to meet teens
from their after-school program, which is based on Evolutions.
I was also able to work in a laboratory internship and
participate in a youth employment program called Sci. Corps
that provides training on exhibit interpretation. I joined Sci.
Corps and was eventually promoted to Museum Fellow, where I
taught my peers innovative teaching methods, developed
curriculum and supervised daily operations. My junior year, I
was able to present on the benefits of hiring youth in museums
at the Association of Science and Technology Center's
conference in Albuquerque, New Mexico. My senior year, we
worked hard to organize the next M.A.Y.A. conference that
focused on environmental issues within urban communities.
My peers and I formed a community of growing young leaders who
advanced the mission of the Peabody to bring the knowledge it
holds to a broader audience. As residents of neighborhoods
surrounding Yale University, we brought a unique and essential
perspective and enabled the museum to better bring science and
local communities together. At Evolutions, my ideas were
valued, and I was able to confidently express my opinions while
also collaborating with my friends in the program.
Evolutions normalized the idea of pursuing the sciences while
also giving us the space to discuss the barriers to access
disadvantaged students face. This program was the first time my
witness of inequalities and intergenerational trauma was not
only taken seriously but also used to dismantle outdated ideas
of who ``deserves'' extracurricular opportunities. I have not
experienced a similar space since then, but because I
participated in Evolutions as a teenager, I am confident in the
validity of my experiences and how I can use it to enact real
change.
I continue to use the skill sets I gained from the Evolutions
program and firmly believe it helped me to be more fearless in
my goals. I, along with other Evolutions participants, poured
years into developing, expanding, and supporting the Evolutions
After School Program, which was only possible because of
funding from the IMLS Office of Museum Services. Now as an
alumnus of the program and a Yale University student, there is
not a day that goes by where I am not using a skill set I first
developed at Evolutions. I am excited to see the next chapter
of Evolutions, as this new generation aims beyond my wildest
expectations.
Museums have a profound positive impact on society and I am
living proof.''
IMLS grants to museums are highly competitive and decided through a
rigorous peer-review process. Even the most ardent deficit hawks ought
to view the IMLS grant-making process as a model for the Nation. It
should be noted that each time a museum grant is awarded, additional
local and private funds are also leveraged. In addition to the dollar-
for-dollar match generally required of museums, grants often spur more
giving by private foundations and individual donors. Two-thirds of
Museums for America grantees report that their grant encouraged
additional private funding. By leveraging significant private, State,
and local funding, OMS grants amplify a small Federal investment for
maximum impact in the community.
Congress overwhelmingly reauthorized IMLS and its Office of Museum
Services in late 2018 by enacting the Museum and Library Services Act
of 2018 (Public Law No: 115-410). The legislation was passed with
widespread bipartisan support by unanimous consent in the Senate and by
a vote of 331 to 28 in the House, showing Congress' renewed bipartisan
support for the agency's programs and a renewed commitment to its
funding.
There is high demand for funding from the IMLS Office of Museum
Services. In fiscal year 2018 it received 819 applications requesting
nearly $120 million, but current funding has allowed the agency to fund
only a small fraction of the highly rated grant applications it
receives. Despite this funding shortfall, museum attendance has
increased, collections are subject to increasing risk--what happened at
Notre-Dame Cathedral in Paris could happen here--and museum staff
members need professional development in conservation, education, and
technology.
Please consider this request in the context of the essential role
that museums play in our Nation, as well as their immense economic and
educational impact. In closing, I highlight national public opinion
polling that shows that 95 percent of voters would approve of lawmakers
who acted to support museums and 96 percent want Federal funding for
museums to be maintained or increased.
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 and CEO,
American Alliance of Museums.]
______
Prepared Statement of the American Association for Dental Research
On behalf of the American Association for Dental Research (AADR), I
am pleased to submit testimony describing AADR's funding requests for
fiscal year 2020, which include at least $41.6 billion for the National
Institutes of Health and--within NIH--$492 million for the National
Institute of Dental and Craniofacial Research (NIDCR).
AADR is grateful to Congress for providing critical funding
increases for most federally-funded research, including for NIH and
NIDCR, in previous years' funding cycles. We recognize the difficult
budget decisions Congress faces, and we appreciate that lawmakers have
recognized the value that health research and public health programs
provide for the health and well-being our Nation. We also recognize
that for these past increases across non-defense programs, such as
scientific research, to become a reality, Congress has made three 2-
year deals to provide relief from austere budget caps set in the Budget
Control Act of 2011.
By raising the budget caps and providing funding increases for
science, members of Congress have allowed the research community to
more effectively carry out their missions and meet today's needs, and
we hope that trend will continue in fiscal year 2020. Despite these
critical increases, the Federal research enterprise continues to play
``catch up'' after years of lost purchasing power due to inflation,
sequestration, and other budget cuts. As the Committee drafts
appropriations legislation for the coming fiscal year, AADR urges
Members to prioritize Federal research, which improves the health of
Americans and supports economic growth.
NIDCR--the largest institution in the world dedicated exclusively
to research to improve dental, oral and craniofacial health--is among
the many research institutions delivering on their promise to the
American people. The Institute's research contributes to the oral and
overall health of the Nation, helps to reduce the societal costs of
dental care and enhances the evidence base for the dental profession.
We have already seen remarkable returns on our investments in oral
health research. Fluoride in water and dental sealants have led to a
precipitous drop in tooth decay among children and have resulted in
more Americans keeping more of their teeth for longer.\1\ Since the
1950s, the total Federal investment in NIH-funded oral health research
has saved the American public at least $3 for every $1 invested; we
cannot afford to shortchange these programs moving forward.
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\1\ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4212322/.
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In 2018, NIDCR celebrated its 70th anniversary. This milestone
provided an important point of reflection and set the stage for NIDCR's
future--a milestone that was particularly timely given the U.S. Surgeon
General's commission of a 2020 Report on Oral Health in America. NIDCR
is the lead contributing agency on the report, working alongside the
U.S. Public Health Service's Oral Health Coordinating Committee, the
Centers for Disease Control and Prevention (CDC), and other
stakeholders. This report--beyond its findings on the State of oral
health in America and their implications--holds the same promise that
the first report did in 2000: raising the visibility of oral health,
putting oral health in the context of overall health, and underscoring
the necessity of investing in scientific research to further improve
oral health for all Americans.
Oral health, too often considered on its own, is integral to
overall health. Most readily apparent in someone's day-to-day life,
oral health can affect activities that may be taken for granted: the
ability to eat, drink, swallow, smile, communicate or maintain proper
nutrition. However, the oral cavity can also serve as a window into
other potential health issues and as a place for important scientific
discovery. Researchers have discovered important linkages between
periodontal (gum) disease and heart disease, stroke, diabetes and
pancreatic cancer. As one example, a team of intramurally- and
extramurally-funded NIDCR scientists established that there is a link
between rheumatoid arthritis and periodontal disease via a common oral
bacterium that causes inflammation in both diseases.\2\
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\2\ www.ncbi.nlm.nih.gov/pubmed/27974664.
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The research being conducted at and supported by NIDCR impacts the
lives of millions of Americans. From research into how aerosols from e-
cigarette vapors affect the oral microbiome to research into the
prevention and treatment of HPV-related oropharyngeal cancer, which has
risen significantly in recent decades, NIDCR-funded scientists are
helping us to respond to visible public health concerns.
Of course, NIDCR's research is not only important from a public
health and policy perspective, but it is also important from a patient
perspective. NIDCR's portfolio encompasses a wide range of diseases and
conditions that impede quality of life, are physically debilitating,
and create a major financial and social burden. The Institute conducts
research on complex systemic diseases that have a major oral health
component, including TMJ; autoimmune disorders, such as Behcet's and
Sjogren's Syndrome; and rare diseases, such as Cleidocranial Dysplasia
(CCD).
During the 2019 AADR and Friends of National Institute of Dental
and Craniofacial Research Advocacy Day on Capitol Hill, participants
heard from Mr. Gaten Matarazzo, star of the Netflix series Stranger
Things, who was born with Cleidocranial Dysplasia (CCD). Mr. Matarazzo
cofounded ``CCD Smiles,'' a patient advocate group, with Dr. Kelly
Wosnik, and the two delivered powerful testimony about what it was like
to live with a rare condition and how they have learned through their
interactions with the CCD community that it is not uncommon for
individuals with CCD to be undiagnosed or misdiagnosed for years.
Theirs are not isolated stories. NIDCR's research is helping to
establish the knowledge base to better understand rare conditions,
develop treatments that are most effective for those affected, and get
the latest evidence and resources into the hands of those who need it
most.
This is an important point in time for dental, oral and
craniofacial research. From the commission of the 2020 Surgeon
General's report to the latest statistics on youth use of e-cigarettes
and the opioid epidemic, dental, oral and craniofacial research are
imperative to solving some of the Nation's most pressing public health
issues. We implore Congress to use this opportunity and momentum to
provide dental, oral and craniofacial research with the resources it
needs to continue making a difference.
To do this effectively, Congress will need to work together to
develop a long-term solution to our Nation's debt and deficit that does
not rely on cuts to non-defense discretionary spending. Most
immediately, this will entail Congress offering relief from the Budget
Control Act caps to allow for these meaningful investments in science.
Equally important, though, Congress must pass regular appropriations
bills, on time, rather than rely on the continuing resolutions that
have become so commonplace in our Federal budget process. The increased
dependence on these short-term spending measures not only undermines
the budget process, but it also negatively affects Federal agencies and
programs, including these Federal agencies' grant recipients.
Budget trends, including continuing resolutions and attempts to
increase defense spending at the expense of non-defense discretionary
spending, add uncertainty in already uncertain times for Federal
research spending. We hope that moving forward Congress will build on
the momentum from fiscal year 2018 and continue to provide Federal
research institutions with predictable and sustained funding.
In addition to supporting NIH, AADR urges Members to fund the full
continuum of Federal research--from discovery to delivery. Research
across the continuum is complementary and will allow us to maximize our
investments. Alongside our NIH requests, our members urge you to
provide $25 million for the CDC's Division of Oral Health, $40.673
million for the Title VII Health Resources and Services Administration
(HRSA) programs training the dental health workforce, $460 million for
the Agency for Healthcare Research and Quality (AHRQ), and $175 million
in budget authority for the National Center for Health Statistics
(NCHS).
Thank you for the opportunity to submit this testimony. We stand
ready to assist the Congress in any way we can and to answer any
questions you may have.
[This statement was submitted by Maria Ryan, DDS, PhD, President,
Board of Directors, American Association for Dental Research.]
______
Prepared Statement of the American Association of Colleges of Nursing
ensuring the future of america's nursing workforce
As the national voice for academic nursing, the American
Association of Colleges of Nursing (AACN) represents over 543,000
nursing students and more than 45,000 nurse faculty. On behalf of its
825 member schools across the country, AACN thanks the subcommittee for
its leadership and support of Nursing Workforce Development programs,
which have a direct impact on the nursing pipeline and access to high-
quality, evidence-based care. The association respectfully requests
your continued investment in America's health in fiscal year 2020 by
providing $266 million for the Nursing Workforce Development programs
(Title VIII of the Public Health Service Act [42 U.S.C. 296 et seq.]),
administered by the Health Resources and Services Administration (HRSA)
and at least $41.6 billion for the National Institutes of Health (NIH),
which includes funds provided to NIH through the 21st Century Cures Act
[Public Law No: 114-255] for targeted initiatives. Within this overall
NIH funding level, AACN requests $173 million for the National
Institute of Nursing Research (NINR).
America's Growing Healthcare and Nursing Workforce Needs
As the largest sector of the healthcare workforce, more than four
million Registered Nurses (RNs) and Advanced Practice Registered Nurses
(APRNs); including Nurse Practitioners (NPs), Certified Registered
Nurse Anesthetists (CRNAs), Certified Nurse-Midwives (CNMs) and
Clinical Nurse Specialists (CNSs), treat and educate patients across
the entire life span.\1\ The nursing workforce is vital to meeting
current and future healthcare demands in all areas, including rural and
underserved communities. According to the Bureau of Labor Statistics,
the projected RN Workforce demand is expected to increase 15 percent by
2026, representing a call for an additional 438,100 nurses.\2\ Demand
for most APRNs is expected to grow by 31 percent.\3\
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\1\ National Council of State Boards of Nursing. (2019). Active RN
Licenses: A profile of nursing licensure in the U.S. as of April 5,
2019. Retrieved from: https://www.ncsbn.org/6161.htm.
\2\ U.S. Bureau of Labor Statistics. (2016). Occupational Outlook
Handbook- Registered Nurses. Retrieved from: https://www.bls.gov/ooh/
healthcare/registered-nurses.htm.
\3\ U.S. Bureau of Labor Statistics. (2016). Occupational Outlook
Handbook- Nurse Anesthetists, Nurse Midwives, and Nurse Practitioners.
Retrieved from: https://www.bls.gov/ooh/healthcare/nurse-anesthetists-
nurse-midwives-and-nurse-practitioners.htm.
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An aging population and projected retirements from the current
nursing workforce are contributing factors that impact nurse supply and
demand. Nursing schools across the country are working to meet the
rising demand and educate all qualified applicants interested in the
profession. Though AACN reported a 3.7 percent enrollment increase in
entry-level baccalaureate programs in nursing in 2018, this increase is
not sufficient to meet the projected demand for nursing services,
including the need for more nurse faculty, researchers, and primary
care providers.\4\ This is why preserving and enhancing Federal
resources for Title VIII Nursing Workforce Development programs and
NINR are essential to bolstering a robust nursing workforce and
implementing new science that will positively impact health outcomes
now and in the future.
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\4\ American Association of Colleges of Nursing. (2019). Nursing
Shortage Fact Sheet as of April 5, 2019. Retrieved from https://
www.aacnnursing.org/Portals/42/News/Factsheets/Nursing-Shortage-
Factsheet.pdf.
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Investing in America's Health: Requesting $266 Million for Title VIII
Nursing Workforce Development Programs in Fiscal Year 2020
For over 50 years, the Title VIII Nursing Workforce Development
programs have consistently and continually sustained the supply and
distribution of highly-educated nurses by strengthening nursing
education at all levels, from entry preparation through graduate study.
Through grants, scholarships, and loan repayments programs, these
indispensable Federal investments positively impact the profession's
ability to serve America's patients in all communities, especially
those most in need.
Educating and Sustaining a Strong Nursing Workforce:
Each of the programs that comprise Title VIII have a unique mission
aimed at promoting nursing care in all communities, especially in
vulnerable and underserved areas. One, in particular, the Nurse Faculty
Loan Program, helps ensure we have faculty to prepare the nursing
students of today to be leaders in the health profession tomorrow.
According to AACN's report on 2018-2019 Enrollment and Graduations in
Baccalaureate and Graduate Programs in Nursing, U.S. nursing schools
turned away more than 75,000 qualified students, and pointed to a
shortage of faculty and/or clinical preceptors as a primary reason for
not accepting all qualified applicants into their programs.\5\ The
Nurse Faculty Loan Program helped fill this critical need by awarding
grants to 84 schools, supporting 1,998 nursing students pursuing a
degree to become nurse faculty during the 2016-2017 Academic Year.\6\
Among those graduating trainees, 92 percent intend to teach nursing.\7\
This is just one program under Title VIII that provides invaluable
support to nursing education, practice, and retention. To ensure the
stability of our nursing workforce, our total request of $266 million
would support all Title VIII programs, including:
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\5\ American Association of Colleges of Nursing. (2019). Nursing
Shortage Fact Sheet as of April 5, 2019. Retrieved from https://
www.aacnnursing.org/Portals/42/News/Factsheets/Nursing-Shortage-
Factsheet.pdf.
\6\ Department of Health and Human Services Fiscal Year 2019 Health
Resources and Services Administration Justification of Estimates for
Appropriations Committees. https://www.hrsa.gov/sites/default/files/
hrsa/about/budget/budget-justification-fy2019.pdf.
\7\ Department of Health and Human Services Fiscal Year 2019 Health
Resources and Services Administration Justification of Estimates for
Appropriations Committees. https://www.hrsa.gov/sites/default/files/
hrsa/about/budget/budget-justification-fy2019.pdf.
--Advanced Nursing Education (Sec. 811), which includes the Advanced
Education Nursing Traineeships and Nurse Anesthetist
Traineeships;
--Nursing Workforce Diversity (Sec. 821);
--Nurse Education, Practice, Quality, and Retention (Sec. 831);
--NURSE Corps Loan Repayment and Scholarship Programs (Sec. 846);
--Nurse Faculty Loan Program (Sec. 846A); and
--Comprehensive Geriatric Education (Sec. 865).
The Importance of Nursing Science: Requesting $173 Million for National
Institute of Nursing Research (NINR)
The healthcare community must continuously investigate and research
new methods to ensure that we are providing the best care possible. As
one of the 27 Institutes and Centers at NIH, NINR plays a vital role in
improving care and is on the cutting edge of new innovations that
impact how nurses are educated and how they practice. Nursing
scientists are moving the field forward in areas as diverse as
genomics, big data, precision health, and data science, often working
with other health professionals. Additionally, NINR allocates a
generous portion of its budget to educating nurse researchers, many of
whom also serve as nurse faculty.\8\ This ensures the sustainability
and longevity of nursing research.
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\8\ 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.
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Strong investments in Title VIII Nursing Workforce Development
programs and NINR have a direct impact on the nursing pipeline and
patient access to high-quality, evidence-based care in all communities
across the Nation. AACN respectfully requests continued support in
fiscal year 2020 of $266 million for the Title VIII Nursing Workforce
Development programs and at least $41.6 billion for the National
Institute of Health, which includes $173 million for the National
Institute of Nursing Research. Together, we can ensure that such
investments promote innovation and improve healthcare in America.
[This statement was submitted by Ann H. Cary, PhD, MPH, RN, FNAP,
FAAN, Board Chair, American Association of Colleges of Nursing.]
______
Prepared Statement of the American Association of Colleges of
Osteopathic Medicine
The American Association of Colleges of Osteopathic Medicine
(AACOM) leads and advocates for the full continuum of osteopathic
medical education to improve the health of the public. Founded in 1898
to support and assist the Nation's osteopathic medical schools, AACOM
represents all 35 accredited colleges of osteopathic medicine--
educating nearly 31,000 future physicians, 25 percent of all U.S.
medical students--at 55 teaching locations in 32 U.S. States, as well
as osteopathic graduate medical education professionals and trainees at
U.S. medical centers, hospitals, clinics, and health systems.
AACOM strongly supports restoring funding for discretionary Health
Resources and Services Administration (HRSA) programs to $8.56 billion;
total funding of $690 million for key priorities in HRSA's Title VII
and Title VIII programs under the Public Health Service Act, including
adequate funding for the Centers for Excellence (COE), Health Careers
Opportunity Program (HCOP), Scholarships for Disadvantaged Students
(SDS) Program, Geriatrics Education Centers (GECs); $67 million for the
Area Health Education Centers (AHECs) Program; $59 million for the
Primary Care Training and Enhancement (PCTE) Program; $15 million for
the Rural Residency Planning and Development Program; long-term
sustainable funding for the Teaching Health Center Graduate Medical
Education (THCGME) Program; at least $120 million in level funding for
the National Health Service Corps (NHSC) and extension of the trust
fund; a minimum of $41.6 billion for the National Institutes of Health
(NIH); and $460 million in budget authority for the Agency for
Healthcare Research and Quality (AHRQ).
The Title VII health professions education programs, authorized
under the Public Health Service Act and administered through HRSA,
support the training and education of health practitioners to enhance
the supply, diversity, and distribution of the healthcare workforce,
acting as an essential part of the healthcare safety net and filling
the gaps in the supply of health professionals not met by traditional
market forces. Title VII programs are the only Federal programs
designed to train primary care professionals in interdisciplinary
settings to meet the needs of medically underserved populations, as
well as increase minority representation in the healthcare workforce.
AACOM supports total funding of $690 million for Title VII and Title
VIII programs.
As the demand for health professionals increases in the face of
impending shortages and the anticipated demand for access to care
increases, these needs strain an already fragile healthcare system.
AACOM appreciates the investments that have been made in these
programs, and we urge the Subcommittee for inclusion and/or continued
support for the following programs: the COE, the HCOP, the SDS Program,
the GECs, the AHECs, the PCTE Program, and the Rural Residency Planning
and Development Program.
The COE Program is integral to increasing the number of minority
youth who pursue careers in the health professions.
The HCOP provides students from disadvantaged backgrounds with the
opportunity to develop the skills needed to successfully compete,
enter, and graduate from health professions schools.
The SDS Program provides scholarships to health professions
students from disadvantaged backgrounds with financial need, many of
whom are underrepresented minorities.
GECs are collaborative arrangements between health professions
schools and healthcare facilities that provide training between health
professions schools and healthcare facilities that provide the training
of health professions students, faculty, and practitioners in the
diagnosis, treatment, and prevention of disease, disability, and other
health issues.
The AHEC Program provides funding for interdisciplinary, community-
based, primary care training programs. Through a collaboration of
medical schools and academic centers, a network of community-based
leaders works to improve the distribution, diversity, supply, and
quality of health personnel, particularly primary care personnel, in
the healthcare services delivery system, specifically in rural and
underserved areas. AACOM supports a request of $67 million for the AHEC
Program and strongly opposes any effort to eliminate this critical
program.
The PCTE Program provides funding to support awards to primary care
professionals through grants to hospitals, medical schools, and other
entities. AACOM supports a request of $59 million for this important
program.
The Rural Residency Planning and Development Program supports the
development of new rural residency programs or Rural Training Tracks in
family medicine, internal medicine, and psychiatry to help expand the
physician workforce in rural areas across the country. Health
professions workforce shortages are exacerbated in rural areas, where
communities struggle to attract and maintain well-trained providers.
AACOM supports the inclusion of $15 million for the Rural Residency
Planning and Development Program.
AACOM continues to strongly support the long-term sustainment of
the THCGME Program, which provides funding to support primary care
medical and dental residents training in community-based settings. The
majority of currently-funded medical residency programs are osteopathic
or dually-accredited (DO/MD). Currently, there are more than 700
residents being trained in 56 HRSA- supported THC residencies in 23
States. According to HRSA, physicians who train in teaching health
centers (THCs) are three times more likely to work in such centers and
more than twice as likely to work in underserved areas. The
continuation of this program is critical to addressing primary care
physician workforce shortages and delivering healthcare services to
underserved communities most in need. AACOM is pleased that Congress
supported this highly successful bipartisan program by extending it for
fiscal years 2018 and fiscal year 2019 through the Bipartisan Budget
Act of 2018 (Public Law 115-123). However, this program will expire on
September 30. Stable funding is necessary for the THCGME Program to
continue to expand and increase the number of physicians that work in
communities of need. AACOM strongly supports the continuation of and
permanent funding for the THCGME Program and will continue to work with
Congress to support a sustainable and viable funding mechanism for the
continuation beyond fiscal year 2019. Furthermore, we strongly support
that the program's funding continues as mandatory funding beyond fiscal
year 2019.
The NHSC supports physicians and other health professionals who
practice in health professional shortage areas across the U.S. The NHSC
notes that a field strength of more than 11,400 primary care clinicians
are providing services nationwide in health professional shortage areas
in fiscal year 2019. While we were pleased to see a 2-year extension of
this program per the Bipartisan Budget Act of 2018 (Public Law 115-
123), stable funding is necessary for the continuation of this
critically effective program. Therefore, AACOM supports the stability
of the NHSC by requesting at least $120 million in level funding for
the NHSC and extension of the NHSC trust fund, which expires at the end
of this fiscal year.
Research funded by the NIH leads to important medical discoveries
regarding the causes, treatments, and cures for common and rare
diseases, as well as disease prevention. These efforts improve our
Nation's health and save lives. To maintain a robust research agenda,
further investment will be needed. AACOM supports a funding level of at
least $41.6 billion for the NIH.
AHRQ plays an important role in producing the evidence base
research needed to improve our Nation's health and healthcare. The
incremental increases for AHRQ's Patient Centered Health Research
Program in recent years will help AHRQ generate more of this research
and expand the infrastructure needed to increase capacity to produce
this evidence; however, more investment is needed. AACOM recommends
$460 million in budget authority for AHRQ. This investment will
preserve AHRQ's current programs while helping to restore its critical
healthcare safety, quality, and efficiency initiatives. Additionally,
AACOM opposes the consolidation of AHRQ into the NIH.
AACOM appreciates the opportunity to submit its views and looks
forward to continuing to work with the Subcommittee on these important
matters.
[This statement was submitted by Stephen C. Shannon, DO, MPH,
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 society of research scientists and physicians who
study the immune system, respectfully submits this testimony regarding
fiscal year 2020 appropriations for the National Institutes of Health
(NIH). AAI recommends an appropriation of at least $41.6 billion for
fiscal year 2020 to enable NIH to fund critically important new and
ongoing immunological research, support the current--and next--
generation of biomedical researchers, and ensure continued U.S.
leadership in basic, translational, and clinical research.
the recent history (with a nobel prize)--and the
exciting future--of immunology
For more than a century, the immune system had been defined by its
role protecting against infectious agents, such as viruses, bacteria,
and parasites, that cause disease. That understanding has evolved
dramatically. Research has since demonstrated that the immune system
can also be harnessed to great purpose: it can kill malignant tumors,
manage autoimmune diseases, and promote healing.
In 2018, the Nobel Prize in Physiology or Medicine was awarded to
two AAI members, American immunologist and NIH grantee James Allison,
Ph.D., and Japanese immunologist Tasuku Honjo, M.D., Ph.D., for their
groundbreaking discovery that the immune system's natural brakes, which
prevent excessive harm to the body's own cells, can be released,
allowing immune cells to attack and kill tumor cells. This key finding
has led to the development of immunotherapy agents known as checkpoint
inhibitors, which have now been approved by the Food and Drug
Administration (FDA) for the treatment of several solid tumors and
blood cancers.\1\ According to the Nobel Committee, this ``entirely new
principle for cancer therapy''... ``constitute[s] a landmark in our
fight against cancer.'' \2\ These Nobel Laureates, and many other AAI
members and scientists, have built on this discovery to help develop
drugs and therapies that are not only transforming how we prevent,
treat, and potentially cure several types of cancer, but are also
showing similar promise for many other diseases, including rheumatoid
arthritis, type 1 diabetes, and inflammatory bowel disease.\3\
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\1\ https://www.fda.gov/drugs/informationondrugs/approveddrugs/
ucm279174.htm.
\2\ https://www.nobelprize.org/prizes/medicine/2018/press-release/.
\3\ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4896612/; https://
www.ncbi.nlm.nih.gov/pubmed/28260183; https://www.ncbi.nlm.nih.gov/
pubmed/29624476.
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The immune system, once thought to be a discrete system, has been
shown to be a complex network of cells and organs that has an impact on
virtually every other organ of the body and plays a significant role in
preventing, contracting, and fighting innumerable infectious,
autoimmune, and chronic diseases, including Alzheimer's disease,
cardiovascular disease, HIV/AIDS, influenza, measles, tuberculosis,
Ebola, and other public health threats. This progress has led to a
greater understanding of the immune system, and the recognition that
immune system-driven inflammation can not only promote healing, but if
overexuberant, can also exacerbate human disease.
Recently, significant developments in immunology research include:
--Immunotherapy: Although immense progress has been made to use the
immune system to kill cancer cells, much research is still
needed to improve on existing, and develop new,
immunotherapies. For example, not all tumors appear susceptible
to immune cell killing, and NIH-funded research continues to
investigate how to address this challenge.\4\ In addition,
because not all patients benefit from immunotherapy, there is
significant effort underway to understand why and when this
treatment is effective.\5\ Finally, because certain tumors
appear to become resistant to some immunotherapy treatments,
research to discover next generation approaches is
necessary.\6\
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\4\ https://www.ncbi.nlm.nih.gov/pubmed/28159861.
\5\ https://jamanetwork.com/journals/jama/fullarticle/2719519.
\6\ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5391692/.
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--Universal influenza vaccine: Despite the existence of a seasonal
influenza virus (flu) vaccine, flu remains a major cause of
disease, with an estimated 9.3 to 49 million illnesses and
12,000 to 79,000 deaths annually in the United States.\7\
Although vaccination is still the best way to protect against
getting sick, the current flu vaccine is suboptimal in part
because it must be re-administered annually and does not induce
broad cross-protection that would provide immunity against
newly emerging flu strains that have pandemic potential. NIH is
supporting the development of a universal flu vaccine, which
has the potential to provide broad protection for all age
groups against many flu strains.\8\ NIH-sponsored clinical
trials of universal flu vaccine candidates have been launched
in 2018 and 2019.\9\
---------------------------------------------------------------------------
\7\ https://www.cdc.gov/flu/about/disease/burden.htm.
\8\ https://www.niaid.nih.gov/news-events/niaid-unveils-strategic-
plan-developing-universal-influenza-vaccine.
\9\ https://www.niaid.nih.gov/news-events/niaid-sponsored-trial-
universal-influenza-vaccine-begins; https://www.nih.gov/news-events/
news-releases/nih-begins-first-human-trial-universal-influenza-vaccine-
candidate.
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--Discovery of immune cell infiltration into the brain: Historically
the brain has been described as an immuno-logically privileged
site, in part because of the apparent lack of classical
lymphatic vessels throughout the body that allow immune cells
to circulate. However, meningeal lymphatic vessels were
discovered in 2015, earning a ``Breakthrough of the Year''
nomination by Science magazine.\10\ This discovery confirmed a
connection between the immune and nervous systems which had not
been previously recognized. A 2018 NIH-funded study then showed
microscopic ``tunnels'' or vessels used to transport immune
cells directly to sites of brain injury, providing ways for
immune cells to contribute to healing from the injury. Further
research is needed to determine whether these newly discovered
vessels may be useful for drug delivery in the future for
stroke, Alzheimer's, and other brain diseases, or whether they
could be harmful by contributing to immune damage to the
brain.\11\
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\10\ https://www.nih.gov/news-events/nih-research-matters/
lymphatic-vessels-discovered-central-nervous-system; http://
science.sciencemag.org/content/350/6267/1458.
\11\ https://www.ninds.nih.gov/News-Events/News-and-Press-Releases/
Press-Releases/Researchers-unearth-secret-tunnels-between-skull.
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As described in part in the examples above, immunologists have made
extraordinary progress, but there is still much to do. The next series
of breakthroughs will be achieved only with strong Federal support.
nih's essential role in the nation's--and the world's--
biomedical research enterprise
As the Nation's major funding agency for biomedical research, NIH
distributes approximately 80 percent of its budget to more than 300,000
researchers at about 2,500 universities, medical schools, and other
research institutions in all 50 States, the District of Columbia,
several U.S. territories, and internationally.\12\ NIH also devotes
about 10 percent of its budget to supporting approximately 6,000
additional researchers and clinicians who work at NIH facilities
located in Maryland, Arizona, Montana, and North Carolina.\13\ By
supporting researchers and laboratories across the Nation, NIH funding
not only draws on the ideas of the best scientists in the country, but
also strengthens State and local economies; in 2018, NIH funding
supported more than 433,000 jobs across the U.S.\14\
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\12\ https://www.nih.gov/about-nih/what-we-do/budget; https://
report.nih.gov/award/index.cfm.
\13\ https://irp.nih.gov/about-us/research-campus-locations.
\14\ http://www.unitedformedicalresearch.com/advocacy_reports/nihs-
role-in-sustaining-the-us-economy-2019-update/.
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The research generated by NIH funding is also critically important
to the Nation's highly successful pharmaceutical industry: according to
a 2018 report published in the Proceedings of the National Academies of
Sciences, NIH-funded research contributed to all 210 of the new drugs
approved by the FDA from 2010-2016.\15\ This may be the strongest
evidence to date that NIH-funded basic research is an essential and
irreplaceable part of the biomedical research pipeline, leading to
lifesaving and life-changing new drugs.
---------------------------------------------------------------------------
\15\ https://directorsblog.nih.gov/2018/02/27/basic-research-
building-a-firm-foundation-for-biomedicine/.
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NIH also serves as an indispensable scientific leader both in the
U.S. and internationally. The steward of more than $39 billion in
Federal funds, NIH keeps our Nation's leaders apprised of scientific
advancements, research priorities, and emerging threats, and works to
ensure that taxpayer dollars are properly and prudently spent. It
oversees and establishes standards for the conduct of scientific
research at academic institutions in the U.S. NIH also develops and
sustains collaborations between the U.S. and other nations to work
toward common goals, and between the Federal Government and the private
sector, including the pharmaceutical, biotechnology, and medical device
industries, which rely on NIH-supported basic research to provide a
foundation of new knowledge upon which they can build.
funding increases have restored some, but not all, of
nih's purchasing power
Through generous, needed increases of $3 billion in fiscal year
2018 and $2 billion each in fiscal year 2016, fiscal year 2017, and
fiscal year 2019 (including supplemental funding to support initiatives
authorized by the 21st Century Cures Act), this subcommittee and the
full Congress have helped restore some of the lost purchasing power
that NIH experienced following years of insufficient budgets and
erosion from biomedical research inflation; once 25 percent below its
peak funding level (2003), the gap has eased to 9 percent. Robust
funding increases will continue to be needed to close this gap and
allow the research enterprise to grow to meet current opportunities. As
the baby boom generation continues to retire, it is even more urgent
that we ensure a dynamic research environment that will allow for the
training, development, and support of our next generation of
researchers, doctors, professors, and inventors. Timely, robust funding
increases for NIH and other science agencies would bolster confidence
among current and emerging American researchers who are unsure about
the future of academic science.
conclusion
AAI greatly appreciates the subcommittee's strong, continuous
bipartisan support for NIH and urges an appropriation of at least $41.6
billion for fiscal year 2020. Such a robust increase in regular
appropriations, combined with funding the 21st Century Cures Act
initiatives to their fully-authorized fiscal year 2020 levels, will
continue to strengthen NIH's ability to fund research that advances our
fundamental knowledge of biology, support talented scientists and
trainees pursuing research careers in the United States, and provide
hope to all who are impacted by disease or disability.
[This statement was submitted by David D. Chaplin, M.D., Ph.D.,
American
Association of Immunologists.]
______
Prepared Statement of the American Association of Neuromuscular &
Electrodiagnostic Medicine
fiscal year 2020 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 continue to provide meaningful funding increases for efforts
to improve health outcomes for patients affected by
neuromuscular conditions; most notably medical research at the
National Institutes of Health and public health activities
(such as the National Neurological Diseases Surveillance
System) at the Centers for Disease Control and Prevention.
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, thank you for the opportunity to present the views of
the American Association of Neuromuscular & Electrodiagnostic Medicine
(AANEM) during the consideration of fiscal year 2020 LHHS
appropriations. The challenges and opportunities that I will review
today are not unique to AANEM, but impact a variety of medical
professional societies and patient communities who rely on proper EDX
testing. My comments are provided in the interest of spotlighting
serious issues that continue to undermine patient care and waste
Federal healthcare resources, while advancing policy tools to
efficiently and effectively address these issues. In this regard,
please consider the AANEM a resource moving forward. Thank you again
for this important opportunity.
about aanem
AANEM is a nonprofit membership association dedicated to the
advancement of neuromuscular, musculoskeletal, and EDX medicine. Our
members--primarily neurologists and physical medicine and
rehabilitation (PMR) physicians--are joined by allied health
professionals and PhD researchers working to improve the quality of
medical care provided to patients with muscle and nerve disorders.
Founded in 1953, AANEM currently has over 4,500 members across the
country. Our mission is to improve quality of patient care and advance
the science of 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/preform 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 have actually made it harder to identify
systematic fraud and abuse. Bad actors are aware of the gaps in the
current CMS regulatory and enforcement framework that create a unique
blind spot for EDX testing, and this deficiency continues to be
exploited with many criminal endeavors operating in the open for years
as sham professional service providers (the small number that are
caught and convicted annually has not served as a deterrent). To be
clear, the victims continue to be the patients that are improperly
tested, subjected to a battery of studies, and over-billed, with no
intention of receiving an accurate diagnosis or who were never in need
of testing in the first place.
common fraud schemes
Mobile Labs.--Unlike traditional healthcare mobile labs that
conduct community outreach and deliver valuable clinical services, EDX
``mobile labs'' exist exclusively to perpetuate fraud. A provider is
solicited to have a technician sent to their office to conduct EDX
testing for all patients on a given day under the guise of generating
additional revenue and enhancing services offered. The provider is
often unaware that the testing is improper and that the fraudulent
company is using the untrained provider to technically fulfill the
requirement of ``supervising'' the tests. The testing is not guided
onsite nor in real time, as is required by the AMA's CPT codebook, and
as many nerves as possible are tested to increase billing. The tests
are then sent to a complicit, offsite clinician that ``reviews'' the
results after the fact and submits for reimbursement. From the
perspective of the third-party payer reviewing the billing, this system
of fraud is nearly impossible to identify.
Pain Fiber NCS.--Fraudulent activity in this area is increasingly
associated, in part, with disreputable pain clinics. Proprietary
devices claim to evaluate pain, and diagnose sensory radiculopathies (a
pinched nerve in the neck or back), or even fibromyalgia. These
machines are not actually capable of selectively stimulating nerve
fibers or recording the nerve responses so no type of radiculopathy can
be accurately or reliably diagnosed. CMS is aware of this and created
non reimbursable codes, but bad actors simply bill for the procedure
using standard NCS codes.
NCS with EMG Testing.--A complete EDX examination typically
involves both NCS and EMG studies, with NCS testing exclusively
required in a small number of cases. However, since needle EMG is an
invasive procedure and bad actors are relying on a technician, a high
rate of NCS-only studies is a hallmark of fraud and abuse.
statement of aanem member dr. vince tranchitella
New NCS codes became effective on January 1st, 2013. The new codes
were developed as a direct response to fraudulent activity that
resulted in the exponentially increased use of NCS. Unfortunately, the
new NCS codes failed to have the desired effect. In the past 3 years
alone, I have reviewed at least 20 EDX medicine fraud cases, involving
multiple providers each, affecting thousands of patients. Nine of these
cases involved providers in the New York City region. Most of the
providers I reviewed did not receive appropriate training in EDX
Medicine yet were still regularly conducting studies.
recent examples
EDX fraud not only wastes healthcare dollars, but more importantly
the quality of patient care suffers severely. As an example, a recent
case in which I testified in Houston working for the FBI and a US
Attorney, 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, greater than 85 percent of the
diagnoses arrived at with these fraudulent studies were incorrect and
unreliable. These inappropriate and inaccurate studies did not help
these patients in finding appropriate treatments or solutions to their
medical problems, but in fact often sent them 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 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).
In a case from Louisiana, I reviewed more than 25 patients charts
in detail and found that in no case had the EDX study been performed
correctly (resulting in no patients being given correct diagnoses).
This case was especially remarkable in that the practitioner
perpetrating the fraud was reviewing the cases from his couch in the
evenings and billing more than 1.8 million dollars each year!
current opportunities
CMS, FBI, and the HHS OIG have been doing tremendous work to root
out fraud and abuse in EDX medicine, but these dedicated public
servants are limited by the constraints of the current pay-and-chase
model. Additional resources for ongoing CMS efforts to address
healthcare fraud and abuse will facilitate incremental improvements and
further protect patients, but modernization is needed as well. Over
recent appropriations cycles, Congress has called on CMS to work with
the EDX community on innovative solutions that could better identify
bad actors conducting EDX testing or simply prevent payments for
improper studies before they are made. Please continue to work with CMS
through the fiscal year 2020 appropriations process to recommend
greater community collaboration and to encourage meaningful and timely
progress in the area of EDX fraud and abuse.
[This statement was submitted by Peter A. Grant, MD, EDX Fraud and
Abuse Consultant for FBI and OIG, American Association of Neuromuscular
& Electrodiagnostic Medicine.]
______
Prepared Statement of the American Chemical Society
Dear Chairman Blunt and Ranking Member Murray:
The American Chemical Society (ACS) urges you to support robust
funding for the National Institutes of Health (NIH) when the Labor,
Health and Human Services, Education and Related Agencies
appropriations bill is written. The work of the National Institute of
General Medical Sciences (NIGMS), National Center for Advancing
Translational Sciences (NCATS), and the National Institute of
Biomedical Imaging and Bioengineering (NIBIB) are particularly vital to
advancing medical research and promoting the health of the American
people, but remains unfamiliar to many Americans compared to disease-
specific centers and institutes. Through its research grants and
fellowship programs, NIH also plays an integral role in attracting and
training the young scientists and engineers who will help the United
States remain a leader in medical research and technology. Investing in
the NIH now ensures a future of well-trained scientists and continued
medical advances.
As an organization of over 150,000 chemical scientists and
engineers, ACS understands the benefits of sustained, predictable
funding for NIH to the research community. For example, NIGMS, which
has supported more than 50 Nobel laureates, funds high-quality, non-
disease-specific basic research, laying the scientific foundation for
an array of advances in disease prevention, diagnosis, and treatment.
NIBIB supports basic research and training through investigator-
initiated grants, contracts, program project and center grants, and
career development and training awards. The Institute also specializes
in the development and application of cutting-edge technologies based
upon engineering, mathematics, and the physical sciences for the
solution of challenges intersecting biology and medicine. NCATS focuses
on ensuring that ground-breaking research from universities reaches the
people who need it by streamlining the pipeline from basic research to
applied research to medicines and techniques used in medicine. NIGMS,
NIBIB, and NCATS all contribute to the vibrant health and medical
research community in the United States and we realize that the return
of Budget Control Act caps hampers the ability of appropriators to
invest in critical Federal priorities. We urge Congress to devise a new
bipartisan budget agreement that raises nondefense discretionary
spending caps to ensure continued scientific innovation and progress in
medical research. We believe that any agreement on discretionary caps
should provide comparable defense and nondefense increases. We also
request a funding allocation for the Labor-HHS Subcommittee that allows
for the sustained investment in NIH.
Sincerely.
[This statement was submitted by Glenn S. Ruskin, Vice President,
External
Affairs & Communications.]
______
Prepared Statement of the American College of Cardiology
The American College of Cardiology (ACC) commends Congress for
boosting funding for the National Institutes of Health (NIH) and
Centers for Disease Control and Prevention (CDC) in fiscal year 2018
and fiscal year 2019, and mandatory increases for the NIH as part of
the 21st Century Cures Act and the Bipartisan Budget Act of 2018. These
significant investments will help spur the development and
implementation of medical innovations. To continue this important
progress and ensure future medical research advancements in fiscal year
2020 and beyond, ACC urges members of Congress to appropriate the
following funds toward agencies doing vital work in cardiovascular
disease (CVD) treatment and prevention: $3.71 billion for the National
Heart Lung & Blood Institute (NHLBI) and $2.36 billion toward the
National Institute of Neurological Disorders & Stroke (NINDS) to
increase the NIH's purchasing power and preserve U.S. leadership in
research; $160 million toward the CDC's Division for Heart Disease and
Stroke Prevention to strengthen heart disease prevention efforts at
State and local levels, $5 million toward CDC's Million Hearts to
prevent 1 million heart attacks and strokes by 2022, $45.6 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 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\ Despite
reduced capacity to fund grants and new discoveries over the last
decade, the NIH continues to enhance and save millions of lives. The
heart disease death rate has continued to drop since the 1970s \3\ due
to scientific advances and improved heart medications and procedures--
but to meet the challenges of an aging population, rising obesity rates
and unhealthy diets, the NIH must maintain its place at the forefront
of medical innovation for years to come. The NHLBI, the third-largest
institute at the NIH, conducts research related to heart, blood vessel,
lung, and blood diseases, generating drugs for lowering cholesterol,
controlling blood pressure, and dissolving blood clots. These
biomedical advancements have contributed to a 71 percent \4\ decrease
in death rates due to cardiovascular disease. NHLBI's recent
groundbreaking research found that more intensive management of high
blood pressure in people 50 years and older reduces cardiovascular
events by almost 25 percent.\5\ We recommend that NHLBI be funded at
$3.71 billion to maintain current activities and investment toward new
research and emerging technologies related to heart disease.
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\1\ Heart Disease Facts; Centers for Disease Control and
Prevention. https://www.cdc.gov/heartdisease/facts.htm.
\2\ National Coalition for Heart and Stroke Research; American
Heart Association. http://www.heart.org/HEARTORG/Advocate/
IssuesandCampaigns/Research/National-Coalition-for-Heart-and-Stroke-
Research_UCM_428347_Article.jsp#.Wt4h-m4vypo.
\3\ Heart Disease; National Institutes of Health Fact Sheets.
https://report.nih.gov/NIHfactsheets/ViewFactSheet.aspx?csid=96.
\4,5\ HHS/NIH/NHLBI Fiscal Year 2017 Congressional Justification
Report; https://www.nhlbi.nih.gov/sites/default/files/media/docs/
Final%20NHLBI%202017%20CJ_R508_v1_0.
pdf.
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NINDS conducts research on brain and nervous system disorders,
including stroke prevention and treatment. Coronary heart disease and
stroke share many of the same risk factors such as high cholesterol
levels, high blood pressure, smoking, diabetes, physical inactivity,
and being overweight or obese. The NINDS Stroke Clinical Trials Network
develops high-quality, multi-site clinical trials focused on key
interventions in stroke prevention, treatment and recovery. We
recommend that NINDS be funded at $2.36 billion to enhance its existing
initiatives and explore new priorities in stroke prevention.
The CDC plays a vital role in protecting public health through
healthy lifestyle promotion and educational activities designed to curb
non-infectious diseases such as obesity, diabetes, stroke, and heart
disease. The CDC Division for Heart Disease and Stroke Prevention
supports efforts to improve cardiovascular health by promoting healthy
lifestyles and behaviors, healthy environments, and access to early
detection and affordable treatment. The division engages with local and
State health departments, and a variety of other partners, to provide
funding and resources, conduct research, track risk factors, and
evaluate current programs and policies relating to heart disease. We
recommend that the CDC Division for Heart Disease and Stroke Prevention
be funded at $160 million to continue its prevention activities among
the most vulnerable communities.
The CDC Division for Heart Disease and Stroke Prevention promotes
education and awareness for peripheral arterial disease (PAD). PAD is a
common circulatory problem in which one or more arteries supplying
blood to the legs, arms, or abdomen become blocked. PAD affects 200
million patients worldwide and has a higher prevalence than all cancers
combined, but the disease is substantially underdiagnosed since most
experience few symptoms until irreversible damage is done and may
result in amputation. We encourage the CDC to enhance education and
awareness activities that promote early diagnosis of PAD and ultimately
reduce the number of unnecessary amputations that adversely impact
millions of lives.
Launched in 2012 and co-led by the CDC and the Centers for Medicare
and Medicaid Services, the Million Hearts program coordinates and
enhances CVD prevention activities with the objective of preventing 1
million heart attacks and strokes by the year 2022. The initiative aims
to achieve this goal by encouraging the public to lead a healthy and
active lifestyle, as well as improving medication adherence for aspirin
and other medications to manage blood pressure, cholesterol, and
smoking cessation. We recommend that Million Hearts be funded at $5
million to enhance efforts preventing heart attacks and strokes.
CDC's WISEWOMAN initiative provides more than 165,000 under-
insured, low-income women ages 40-64 with services to help reduce heart
disease and stroke risk factors. Heart disease ranks as the leading
cause of death for women. Only 1 in 5 \6\ women believes heart disease
is her greatest health threat, and 11 percent \7\of women remain
uninsured. We recommend that $45.6 million be allocated for WISEWOMAN
to provide preventive health services, referrals to local healthcare
providers, lifestyle programs, and counseling in all 50 States.
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\6\ WISEWOMAN; Centers for Disease Control and Prevention. https://
www.cdc.gov/
wisewoman/.
\7\ Women's Health Insurance Coverage; The Henry J. Kaiser Family
Foundation. http://kff.org/womens-health-policy/fact-sheet/womens-
health-insurance-coverage-fact-sheet/.
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Congenital heart disease (CHD), a life-long consequence of a
structural abnormality of the heart present at birth, is the number one
birth defect in the U.S. While the diagnosis and treatment of CHD has
greatly improved over the years, most patients with complex heart
defects need special care throughout their lives, and only by expanding
research opportunities can we fully understand the effects of CHD
across the lifespan. As authorized by the Congenital Heart Futures
Reauthorization Act of 2017, we recommend that the CDC National Center
for Birth Defects and Developmental Disabilities be funded at $10
million for enhanced CHD surveillance and public health research.
Programs within CDC's Office on Smoking and Health (OSH) work to
prevent smoking among young adults and eliminate tobacco-related health
disparities in different population groups. In 2012, OSH launched the
national tobacco education campaign, Tips from Former Smokers, which
has motivated more than 5 million \8\ people to quit smoking, with at
least 400,000 quitting permanently.\9\ While these programs have proven
effective in tobacco cessation and prevention, more than 480,000 people
still die every year from causes attributable to smoking, and 33
percent of those deaths stem from heart disease.\10\ We recommend that
OSH be funded at $310 million to continue leading the Nation's efforts
in preventing chronic diseases caused by tobacco use.
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\8,9\ Office on Smoking and Health; Centers for Disease Control and
Prevention. https://www.cdc.gov/tobacco/about/osh/.
\10\ At a Glance 2016 Tobacco Use; Centers for Disease Control and
Prevention. https://www.cdc.gov/chronicdisease/resources/publications/
aag/pdf/2016/tobacco-aag.pdf.
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On behalf of our members who work to prevent and treat CVD, ACC
would like to thank members of Congress for supporting medical
innovation as we continue the fight against heart disease. Stable
funding for research, surveillance, and healthy lifestyle promotion
will not only save lives, but save healthcare costs in the long term.
Medical research nurtures economic growth by creating jobs and new
technologies, which will produce billions of dollars in Medicare and
Medicaid savings over the next decade. Please help us secure robust
funding for NIH and CDC funding to protect the health of future
generations.
[This statement was submitted by Richard J. Kovacs, 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 58,000 physicians and partners dedicated to
advancing women's health, is pleased to offer this statement to the
Senate Committee on Appropriations, Subcommittee on Labor, Health and
Human Services, Education, and Related Agencies. We thank Chairman
Blunt, Ranking Member Murray, and the entire Subcommittee for this
opportunity to provide comments on some of the most important programs
to support and advance women's health.
ACOG commends Congress for making great strides in advancing
research and data collection to advance the health of women and
families. Looking ahead, we urge you to make funding of the following
programs and agencies a priority in fiscal year 2020:
Safe Motherhood, Maternity and Perinatal Quality Collaboratives at
Centers for Disease Control and Prevention (CDC):
The United States has the highest rate of maternal mortality and
severe morbidity of any developed country. The Safe Motherhood
Initiative at CDC works with State health departments to collect
information on pregnancy-related deaths, give technical assistance to
maternal mortality review committees, track preterm births, and improve
maternal outcomes through Maternity and Perinatal Quality
Collaboratives. Important strides have been made as 45 States currently
have or are in the process of implementing State maternal mortality
review committees, however, we must continue to build on these
improvements. ACOG requests you fund the Safe Motherhood Initiative at
$58 million, including $12 million to help States expand or establish
maternal mortality review committees, and $2 million for State-based
perinatal quality collaboratives.
Women's Health Research at the National Institutes of Health (NIH):
Women represent half of the 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 Eunice
Kennedy Shriver National Institute of Child Health and Human
Development (NICHD)'s research mission and portfolio, and the Institute
has achieved great success in advancing research on women's health
throughout the life cycle; maternal, child, and family health; fetal
development; reproductive biology; population health; and medical
rehabilitation. With sufficient resources, NICHD can build upon its
existing initiatives to produce new insights and solutions to benefit
women and families. ACOG supports an appropriation of $41.6 billion for
the National Institutes of Health (NIH) in fiscal year 2020, including
$1.6 billion for NICHD. This amount would maintain a steady trajectory
of $2.5 billion annual increases for the NIH.
ACOG also supports the request of a report on the total dollar
amount of research invested in health conditions specific to women over
the last 10 years, including but not limited to pregnancy, gynecologic
oncology, and infertility; including information about how this
research is prioritized and coordinated across the NIH.
Advancing Maternal Therapeutics at the NIH:
Each year, more than 4 million women give birth in the United
States and more than 3 million breastfeed. However, little is known
about the effects of most drugs on the woman and her child. In 2015 as
part of the 21st Century Cures Act (Sec. 2041 of Public Law 114-255),
Congress created the Task Force on Research in Pregnant Women and
Lactating Women (PRGLAC) to advise the Secretary of HHS on gaps in
knowledge and research on safe and effective therapies for pregnant and
breastfeeding women. In September 2018, PRGLAC produced a report to the
Secretary outlining 15 recommendations to facilitate the inclusion of
this population in clinical research. ACOG supports the implementation
of these recommendations under the oversight of NICHD, working with
other relevant NIH Institutes, the CDC, and the Food and Drug
Administration, and urges Congress to express its continued support.
Title X Family Planning Program at Health Resources and Services
Administration (HRSA):
Family planning and pre-pregnancy care are imperative to ensuring
healthy women and healthy pregnancies. The Title X Family Planning
Program provides essential services to over 4 million low income men
and women who may not otherwise have access to these services. For many
individuals, particularly those who are low-income, uninsured or
adolescents, Title X is essential to their ability to affordably and
confidentially obtain birth control, cancer screenings, STI tests and
other basic care. From 2010-2014, Title X funding was cut by $31
million, despite an increase in the number of patients by one million
over the same period. Due to these cuts, there have been decreases in
the number of patients served. ACOG requests $400 million for Title X
in fiscal year 2020 to ensure individuals in need have access to
evidence-based care.
ACOG is also very concerned that the Administration's March 4th
final rule will dangerously undermine physicians' ability to offer
patients medically accurate, comprehensive care, and urges Congress to
show its strong support by not only funding this critical program but
ensuring that no funds are used to implement the harmful final rule.
Title V Maternal and Child Health Block Grant at HRSA:
The Title V Maternal and Child Health (MCH) Block Grant at HRSA is
the only Federal program that exclusively focuses on improving the
health of mothers and children. The Block Grant is a cost-effective,
accountable, and flexible funding source used to address critical,
pressing, and unique needs of maternal and child health populations in
each State, territory and jurisdiction. Notably, through the Special
Projects of Regional and National Significance (SPRANS) discretionary
grant, the Block Grant supports the Alliance for Innovation on Maternal
Health (AIM)--a program that works with States and hospital systems to
implement evidence-based toolkits, or bundles, to improve maternal
outcomes and reduce rates of maternal mortality and severe morbidity.
For fiscal year 2020, ACOG requests at least $698 million for the Block
Grant to maintain its current level of services, including $5 million
within SPRANS to support continued implementation of AIM.
Investing in Data and Quality at the Agency for Healthcare Research and
Quality (AHRQ):
AHRQ is the Federal agency with the sole purpose of improving
healthcare quality. AHRQ produces data with the mission of making
healthcare safer, higher quality, more accessible, equitable, and
affordable. AHRQ works with HHS and other partners to ensure that the
evidence improves patient safety. ACOG supports $460 million for AHRQ
in fiscal year 2020, which is consistent with the fiscal year 2010
funding level for the agency adjusted for inflation.
Public Health Surveillance at CDC:
Uniform, accurate, and comprehensive data is essential for
addressing the rising rates of maternal mortality and severe maternal
morbidity in the United States. Unfortunately, the Nation's public
health data systems are antiquated, lack interoperability and data and
reporting standards, and are in dire need of security updates. There
are five core data systems of the U.S. public surveillance enterprise
that require modernization now to protect the health security of all
Americans: (1) the National Notifiable Disease Surveillance System
(NNDSS) to collect vital individual case data to assess national
disease burden; (2) Electronic Case Reporting (eCR), the automatic
submission of disease report from electronic health records to health
departments; (3) Syndromic surveillance to provide real-time data on
hospital emergency departments; (4) Electronic Vial Records systems,
the secure collection of birth and death data; and (5) Laboratory
Information Systems, the management and sharing of laboratory data to
inform public health decisionmaking. ACOG urges Congress to show a
robust investment in public health surveillance, and requests funding
to be used to modernize these systems to improve American's health.
ACOG requests $100 million in fiscal year 2020 and $1 billion over 10
years to support this new initiative.
Firearm Morbidity and Mortality Prevention--CDC:
In 2017, there were more than 39,000 U.S. firearm-related
fatalities. federally funded public health research has a proven track
record of reducing public health-related deaths, whether from motor
vehicle crashes, smoking, or Sudden Infant Death Syndrome. This same
approach should be applied to increasing gun safety and reducing
firearm-related injuries and deaths, and CDC research will be as
critical to that effort as it was to these previous public health
achievements. The foundation of a public health approach is rigorous
research that can accurately quantify and describe the facets of an
issue and identify opportunities for reducing its related morbidity and
mortality. For fiscal year 2020, ACOG requests $50 million for CDC to
conduct public health research into firearm morbidity and mortality
prevention.
Diagnosing and Treating Maternal Depression--HHS:
About 1 in 5 women experience maternal depression, and ACOG
recommends that all women be screened, yet women face barriers to
accessing treatment. ACOG commends Congress for fully funding Sec.
10005 of Public Law 114-255 in the Consolidated Appropriations Act of
2018 to establish a program at HHS to expand depression screening and
treatment for pregnant and postpartum women. ACOG urges you to again
fully fund the program at $5 million for fiscal year 2020.
Thank you again for the opportunity to submit our recommendations
to the Subcommittee, and for your commitment to improving women's
health.
[This statement was submitted by Mallory Schwarz, Federal Affairs
Manager, American College of Obstetricians and Gynecologists.]
______
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 2020.
ACP is the largest medical specialty organization and the second-
largest physician group in the United States. ACP members include
154,000 internal medicine physicians (internists), related
subspecialists, and medical students. Internal medicine physicians are
specialists who apply scientific knowledge and clinical expertise to
the diagnosis, treatment, and compassionate care of adults across the
spectrum from health to complex illness. As the Subcommittee begins
deliberations on appropriations for fiscal year 2020, ACP is urging
funding for the following proven programs to receive appropriations
from the Subcommittee:
--Title VII, Section 747, Primary Care Training and Enhancement
(PCTE), Health Resources and Services Administration (HRSA),
$71 million;
--National Health Service Corps (NHSC), $830 million in total program
funding;
--Agency for Healthcare Research and Quality (AHRQ), $460 million;
--Centers for Medicare and Medicaid Services (CMS), Program
Operations for Federal Exchanges, $690 million;
--Continue opioid crisis funding for Comprehensive Drug Addiction and
Recovery Act (CARA) programs, State Targeted Response to the
Opioid Crisis (Opioid STR) grant program funding, and SUPPORT
Act, $3 billion;
--Centers for Disease Control and Prevention (CDC), $7.8 billion,
Injury Prevention and Control, Research on Prevention of
Firearms-related Injuries and Deaths, $50 million;
--National Institutes of Health (NIH), $41.6 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
14,800 to 49,300 primary care physicians by 2030. (IHS Inc., prepared
for the Association of American Medical Colleges. 2018 Update, The
Complexities of Physician Supply and Demand: Projections from 2016 to
2030. March, 2018. Accessed at: https://aamc-
black.global.ssl.fastly.net/production/media/filer_public/85/d7/
85d7b689-f417-4ef0-97fb-ecc129836829/aamc_2018_workforce_
projections_update_april_11_2018.pdf). Without critical funding for
vital workforce programs, this physician shortage will only grow worse.
The health professions' education programs, authorized under Title
VII of the Public Health Service Act and administered through HRSA,
support the training and education of healthcare providers to enhance
the supply, diversity, and distribution of the healthcare workforce.
Within the Title VII program, we urge the Subcommittee to fund the
Section 747 PCTE program at $71 million, in order to maintain and
expand the pipeline for individuals training in primary care. While the
College appreciates the $10 million increase to the program in fiscal
year 2018, ACP urges more funding because the Section 747 PCTE program
is the only source of Federal training dollars available for general
internal medicine, general pediatrics, and family medicine. For
example, general internists, who have long been at the frontline of
patient care, have benefitted from PCTE training models emphasizing
interdisciplinary training that have helped prepare them to work with
other health professionals.
The College urges at least $830 million in total program funding
for the NHSC. For fiscal year 2020, the NHSC's funding situation is
particularly dire and faces a funding cliff because its mandatory
funding is set to expire. In fiscal year 2018, the NHSC received $105
million in discretionary funding to expand and improve access to
quality opioid and substance use disorder treatment in underserved
areas, in addition to $310 million in mandatory funds. The Subcommittee
continued the $105 million in discretionary funds in fiscal year 2019.
The NHSC awards scholarships and loan repayment to healthcare
professionals to help expand the country's primary care workforce and
meet the healthcare needs of underserved communities across the
country. In fiscal year 2018, with a field strength of over 10,900
primary care clinicians, NHSC members are providing culturally
competent care to over 11.5 million patients at over 16,000 NHSC-
approved healthcare sites in urban, rural, and frontier areas. These
funds would help maintain NHSC's field strength helping to address the
health professionals' workforce shortage and growing maldistribution.
There is overwhelming interest and demand for NHSC programs, and with
more funding, the NHSC could fill more primary care clinician needs. In
fiscal year 2016, there were 2,275 applications for the scholarship
program, yet only 205 awards were made. There were 7,203 applications
for loan repayment and only 3,079 new awards. Accordingly, ACP urges
the subcommittee to double the NHSC's overall program funding to $830
million to meet this need.
AHRQ is the leading public health service agency focused on
healthcare quality. AHRQ's research provides the evidence-based
information needed by consumers, clinicians, health plans, purchasers,
and policymakers to make informed healthcare decisions. The College is
dedicated to ensuring AHRQ's vital role in improving the quality of our
Nation's health and recommends a budget of $460 million, restoring the
agency to its fiscal year 2010 enacted level adjusted for inflation.
This amount will allow AHRQ to help providers help patients by making
evidence-informed decisions, to fund research that serves as the
evidence engine for much of the private sector's work to keep patients
safe, to make the healthcare marketplace more efficient by providing
quality measures to health professionals, and, ultimately, to help
transform health and healthcare. With a quarter of the agency's program
level budget supported by the Patient-Centered Outcomes Research Trust
Fund, a strong investment in the AHRQ appropriation will be essential
to sustain the agency's core activities as the Trust Fund undergoes
reauthorization this year.
ACP supports at least $690 million in discretionary funding for
Federal exchanges within CMS' Program Operations, which has been funded
at $2.52 billion the last several fiscal years. 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. If the Subcommittee decides to deny 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.
ACP supports continuing appropriations for the CARA of 2016's grant
programs, continuing the Opioid STR grant program's prior year
increase, and funding the SUPPORT Act's programs in fiscal year 2020.
The College urges the Subcommittee to continue the $3 billion provided
for fiscal year 2018 and fiscal year 2019 in the Bipartisan Budget Act
of 2018 to help expand proven programs such as evidence-based
medication-assisted treatment and first-responder training and access
to naloxone for overdose reversal.
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 $7.8 billion overall for this mission. The College also
supports $50 million for the CDC's Injury and Prevention Control to
fund research on prevention of firearms-related injuries and deaths and
support 10 to 20 multi-year studies and help rebuild lost research
capacity in this area.
Lastly, the College strongly supports $41.6 billion for NIH in
fiscal year 2020 so the Nation's medical research agency continues
making important discoveries that treat and cure disease to improve
health and save lives and that maintain the United States' standing as
the world leader in medical and biomedical research.
The College greatly appreciates the support of the Subcommittee on
these issues and looks forward to working with Congress on the fiscal
year 2020 appropriations process.
[This statement was submitted by Jared Frost, Senior Associate,
Legislative
Affairs, American College of Physicians.]
______
Prepared Statement of the American College of Preventive Medicine
The American College of Preventive Medicine (ACPM) urges the Senate
Labor, Health and Human Services, Education, and Related Agencies
Appropriations Subcommittee to support training for preventive medicine
physicians and other public health professionals by providing $24
million in fiscal year 2020 to the Heath Resources and Services
Administration (HRSA) for the Public Health and Preventive Medicine
line item in Title VII of the Public Health Service Act. ACPM also
supports the recommendation of the Health Professions and Nursing
Education Coalition of $690 million in fiscal year 2020 to support all
health professions and nursing education and training programs
authorized under Titles VII and VIII of the Public Health Service Act.
In today's healthcare environment, the tools and expertise provided
by preventive medicine physicians play an integral role in ensuring the
effective functioning of our Nation's public health system. These tools
and skills include the ability to deliver evidence-based clinical
preventive services, expertise in population-based health sciences, and
knowledge of the social and behavioral determinants of health and
disease. These are the tools employed by preventive medicine physicians
who practice at the health system level where improving the health of
populations, enhancing access to quality care, and reducing the costs
of medical care are paramount. As the body of evidence supporting the
effectiveness of clinical and population-based interventions continues
to expand, so does the need for specialists trained in preventive
medicine.
Organizations across the spectrum have recognized the growing
demand for preventive medicine professionals. The Institute of Medicine
released a report in 2007 calling for an expansion of preventive
medicine training programs by an ``additional 400 residents per year,''
and the Accreditation Council on Graduate Medical Education (ACGME)
recommends increased funding for preventive medicine residency training
programs.
Preventive medicine is the only one of the 24 medical specialties
recognized by the American Board of Medical Specialties that requires
and provides training in both clinical and population-based medicine.
Preventive medicine residency training programs provide a blueprint on
how to train our future physician workforce; physicians trained to
provide individual patient care needs as well as practice at the
community and population level to identify and treat the social
determinants of health. Preventive medicine physicians have the
training and expertise to advance the population health outcomes that
public and private payers are increasingly promoting to their
providers. These physicians have a strong focus on quality care
improvement and are at the forefront of efforts to integrate primary
care and public health.
According to HRSA, and health workforce experts, there are
personnel shortages in many public health occupations, including
epidemiologists, biostatisticians, and environmental health workers
among others. According to the 2018 Physician Specialty Data Book
released by the Association of American Medical Colleges, preventive
medicine is one of only six specialties that saw a decrease in the
number of active physicians between 2012 and 2017. This represents a
worsening trend in the number of preventive medicine physicians in the
field that is not due to a lack of interest or need, but is due to a
lack of funding. Nearly 70 percent of preventive medicine physicians
are over age 55, and the funding gaps mean that there are not enough
entering the field to make up for the current and expected future
shortage. ACPM is deeply concerned about the shortage of preventive
medicine-trained physicians and the ominous trend of even fewer
training opportunities. This deficiency in physicians trained to carry
out core public health activities will lead to major gaps in the
expertise needed to deliver clinical prevention and community public
health services. The impact on the health of those populations served
by HRSA is likely to be profound.
Despite being recognized as an underdeveloped national resource and
in shortage for many years, physicians training in the specialty of
Preventive Medicine are the only medical residents whose graduate
medical education (GME) costs are not supported by Medicare, Medicaid
or other third party insurers. Training occurs outside hospital-based
settings and therefore is not financed by GME payments to hospitals.
Both training programs and residency graduates are rapidly declining at
a time of unprecedented national, State, and community need for
properly trained physicians in public health, disaster preparedness,
prevention-oriented practices, quality improvement, and patient safety.
Currently, residency programs scramble to patch together funding
packages for their residents. Support for faculty and tuition has been
almost non-existent. Directors of residency programs note that they
receive many inquiries about and applications for training in
preventive medicine; however, training slots often are not available
for those highly qualified physicians who are not directly sponsored by
an outside agency or who do not have specific interests in areas for
which limited stipends are available (such as research in cancer
prevention).
HRSA--as authorized in Title VII of the Public Health Service Act--
is a critical funding source for several preventive medicine residency
programs, as it represents the largest Federal funding source for these
programs.
Of note, the preventive medicine residency programs directly
support the mission of the HRSA health professions programs by
facilitating practice in underserved communities and promoting training
opportunities for underrepresented minorities:
--Seventy-seven percent of HRSA-supported preventive medicine
graduates practice in medically underserved communities.
--Nearly half of preventive medicine training sites funded through
HRSA programs were are located in medically underserved
communities.
In addition to training under-represented minorities and physicians
who work in medically underserved areas, preventive medicine residency
programs equip our society with health professionals and public health
leaders who possess the tools and skills needed in the fight against
the chronic disease epidemic that is threatening the future of our
Nation's health and prosperity. Chronic diseases currently cost the
U.S. billions of dollars per year, including heart disease and stroke
($315.4 billion per year), diabetes ($245 billion per year), and
obesity-related diseases ($145 billion per year). Correcting the root
causes of this critical problem of chronic diseases will require a
multidisciplinary approach that addresses issues of access to
healthcare; social and environmental influences; and behavioral
choices. Any efforts to strengthen the public health infrastructure and
transform our communities into places that encourage healthy choices
must include measures to strengthen the existing training programs that
help produce public health leaders.
Further, expanding the preventive medicine workforce strengthens
the disaster preparedness capabilities we must have to ensure our
Nation's health security. Vulnerable populations, including those in
poor health, with disabilities, and chronic diseases are at an
increased risk of adverse health outcomes resulting from natural
disasters. New threats are always on the horizon and some, like the
Zika virus, require preventive medicine specialists working to find
ways to stop the spread before it becomes an epidemic.
Many of the leaders of our Nation's local and State health
departments are trained in preventive medicine. Their unique
combination of expertise in both medical knowledge and public health
makes them ideal choices to head the fight against chronic disease as
well as other threats to our Nation's health, such as the opioid
epidemic. Their contributions are invaluable. Investing in the
residency programs that provide physicians with the training and skills
to take on these leadership positions is an essential part of keeping
Americans healthy and productive. As such, the American College of
Preventive Medicine urges the Labor, Health and Human Services,
Education, and Related Agencies Appropriations Subcommittee to reaffirm
its support for training preventive medicine physicians and other
public health professionals by providing $24 million in fiscal year
2020 to HRSA for the Public Health and Preventive Medicine line item in
Title VII of the Public Health Service Act.
[This statement was submitted by Kate McFadyen, Senior Manager,
Government Affairs, American College of Preventive Medicine.]
______
Prepared Statement of the American Counseling Association
Dear Chairman Blunt and Ranking Member Murray:
Thank you for the opportunity to provide this written testimony on
behalf of the American Counseling Association--a not-for-profit,
professional and educational organization that is dedicated to the
growth and enhancement of the counseling profession. We are the world's
largest association exclusively representing professional counselors in
various practice settings with 54,000+ members nationwide.
The Labor, HHS, Education Appropriations Bill contains several
critical programs for students, families, and communities across the
country. The counseling profession strongly supports prevention and by
providing a sustained investment in the programs outlined below, the
Federal Government can play a key role in providing treatment to our
most vulnerable population--children.
The research is clear--depressed and anxious students are more
likely to be absent, take semesters off, and/or drop out of school.\1\
Connecting these consequences later in life is further damaging as
these lost students are less likely to attain well-paying jobs and
achieve productive life goals.\2\ The investments that Congress
supports today will impact the outcomes of our elementary, secondary,
and post-secondary students throughout their lives.
---------------------------------------------------------------------------
\1\ Eisenberg, Daniel. Connections between mental Health and
Academic Outcomes. Ann Arbor, MI: University of Michigan, March 13,
2014.
\2\ Douce, Louise A., Richard P. Keeling, American Council on
Education, American Psychological Association, and Student Affairs
Administrators in Higher Education. A Strategic Primer on College
Student Mental Health. Rep. Washington, DC: American Council on
Education, 2014.
---------------------------------------------------------------------------
The American Counseling Association offers its full support for the
programs outlined below.
department of education
Student Support and Academic Enrichment Grants--ESSA Title IV Part A
--Fiscal year 2020 American Counseling Association Supported Level--
$1.6 billion
--Fiscal year 2020 President's Budget Request--$0
--Fiscal year 2019 Enacted Level--$1.17 billion
In 2015, the Every Student Succeeds Act (ESSA) eliminated the
Elementary and Secondary School Counseling Program, the only direct
Federal investment in school counselors. Title IV Part A established
the Student Support and Academic Enrichment Grants which allocates
block grants to States for local educational agencies (LEA) to apply
for and implement using several allowable activities, including school
counseling and mental health services. Unfortunately, Title IV Part A
has not been funded to its authorized level, $1.6 billion, in the
preceding fiscal years. In the fiscal year 2020 Department of Education
budget proposal, it was eliminated altogether with a $0 recommendation.
We thank the subcommittee leadership for increasing the funding for
these critical grants to $1.17 billion in fiscal year 2019 but the need
across the country for investment in school counseling programs
continues to grow. The American Counseling Association supports the
fiscal year 2020 Authorized Level of $1.6 billion for the Student
Support and Academic Enrichment Grants.
Mental Health Demonstration Program
--Fiscal year 2020 American Counseling Association Supported Level--
$20 million
--Fiscal year 2020 President's Budget Request--$15 million
--Fiscal year 2019 Enacted Level--$10 million
In the fiscal year 2019 Labor, HHS, Education Appropriations Bill,
Congress included $10 million for a Mental Health Demonstration Program
to encourage innovative higher education partnerships in local school
districts with an emphasis on those with the highest need. In the
absence of a dedicated Federal funding stream for school counselors,
the American Counseling Association strongly supported this program.
Since the demonstration was created, the Department of Education
has been preparing a notice for funding which could be released in the
Summer of 2019. We do not want to see this be a one-time investment in
school based mental health services--continued funding for this
initiative is critical to maximize the impact. As we have unfortunately
seen with recent tragic suicides from family members and students
connected to previous school shootings, the pain and suffering from
these events does not stop. It alters the lives of the students,
parents, and communities involved.
The Administration increased funding to $15 million in its fiscal
year 2020 budget proposal. We expect that the need for these
investments will outpace the funding level, so the American Counseling
Association supports increasing the funding for the innovative
partnerships grant to $20 million in fiscal year 2020.
Public Service Loan Forgiveness (PSLF)
Licensed professional counselors often work in high pressure and
low wage positions that serve the public good--either in schools or
medically underserved areas, for example. The American Counseling
Association thanks you for your continued support of the PSLF program
by providing $700 million in loan forgiveness over the previous two
fiscal years. However, we are concerned about barriers to accessing
this benefit and the extremely high denial rate. A recent letter from
the Department of Education stated that the program has a 96 percent
denial rate. This is entirely unacceptable--the investment made in the
Labor, HHS, Education Bill should serve as a strong indicator to these
professionals that we support and believe in their work. Unnecessary
burdens that make the funds difficult to access go against the purpose
of the program. We support efforts to reform the PSLF process to make
it more accessible to those serving.
department of health and human services
Behavioral Health Workforce Development Programs--HRSA
--Fiscal year 2020 American Counseling Association Supported Level--
$111,916,000
--Fiscal year 2020 President's Budget Request--$111,916,000
--Fiscal year 2019 Enacted Level--$111,916,000
The Behavioral Health Workforce Development Programs are critical
to the further development and expansion of the behavioral health
workforce serving populations across the country, including in rural
and medically underserved areas. Opioid use and its resulting deaths
have impacted the lives of individuals and families, crippled
communities, and depleted limited resources.
The Behavioral Health Workforce Development Programs include the
Behavioral Health Workforce Education and Training (BHWET) Program,
which includes the Opioid Workforce Expansion Program (OWEP), and the
Graduate Psychology Education (GPE) Program. In the 2017-2018 Academic
Year, the BHWET Program supported training for 5,867 individuals--over
50 percent of these students received training in substance abuse
treatment.\3\ The reach of the opioid and mental health crises gripping
our Nation are constrained geographically and we need a licensed,
trained workforce to be able to serve as many individuals in their
communities as possible. Without access to treatment, we risk losing
track of those that need help the most.
---------------------------------------------------------------------------
\3\ Department of Health and Human Services. Fiscal year 2020
Health Resources and Services Administration. Justification of
Estimates for Appropriations Committees. PP 124-126.
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The American Counseling Association supports continued funding for
the Behavioral Health Workforce Development Programs at the fiscal year
2019 enacted level--$111,916,000.
Project AWARE--SAMHSA
--Fiscal year 2020 American Counseling Association Supported Level--
$200,000,000
--Fiscal year 2020 President's Budget Request--$101,964,000
--Fiscal year 2019 Enacted Level--$91,916,000
Project AWARE is designed to identify children and youth in need of
mental health services, increase access to mental health treatment, and
promote mental health literacy among teachers and school personnel. All
three of the components are critical for a comprehensive approach to
address the mental health needs in schools across the country. The
Administration proposed a $10 million increase in funding for this
program in its fiscal year 2020 budget proposal, but the American
Counseling Association supports a more robust investment. H.R. 1109,
bipartisan legislation known as The Mental Health in Schools Act, would
create a $200 million grant program at HHS to address school based
mental health services and strategies needed train related personnel
and families in serious mental health situations. The American
Counseling Association strongly supports H.R. 1109 and that is the
basis for our support of a $200 million investment in Project AWARE in
fiscal year 2020.
Suicide Lifeline--SAMHSA
--Fiscal year 2020 American Counseling Association Supported Level--
$12,000,000
--Fiscal year 2020 President's Budget Request--$12,000,000
--Fiscal year 2019 Enacted Level--$12,000,000
The National Suicide Prevention Lifeline answered over 2 million
calls in 2018 to provide access to crisis intervention and emergency
response (when needed). SAMHSA also coordinates this Lifeline with the
Department of Veterans Affairs to ensure that veterans, service
members, and their families have access to the 24/7 VA's Veterans
Crisis Line. $12 million in fiscal year 2020 will enable SAMHSA to
continue funding two new Crisis Center follow up grant providing an
integrated hub to ensure systematic follow-up of suicidal persons,
enhanced coordination of crisis stabilization, and coordination with
on-site crisis response personnel.\4\
---------------------------------------------------------------------------
\4\ Department of Health and Human Services. Fiscal year 2020
Substance Abuse and Mental Health Services Administration.
Justification of Estimates for Appropriations Committees.
PP 64-66.
---------------------------------------------------------------------------
Unaccompanied Alien Children--ACF
The American Counseling Association expressed its sincere concern
over reports from the HHS Inspector General in 2018 which noted a
shortage of mental health counselors at the Tornillo influx care
facility. We urge the subcommittee to ensure that the Office of Refugee
Resettlement has sufficient Federal resources to increase the number of
mental health counselors in Tornillo--and around the country--so that
each facility reaches the 1:12 clinician-to-child ratio required by the
ORR. Providing refugee children with adequate mental health counseling
is the right thing to do. And, because these children are here asking
to live in America, it makes sense to help them survive the trauma of
being separated from their parents and being held at an ORR influx
facility.
Robust investments by your Subcommittee in these programs would
greatly benefit America's students and better prepare mental health
service providers in schools and communities.
Sincerely.
[This statement was submitted by Richard Yep, CAE,FASAE, Chief
Exective
Officer, American Counseling Association.]
______
Prepared Statement of the American Diabetes Association
For fiscal year 2020, the American Diabetes Association (ADA) urges
the Subcommittee to increase its investment in diabetes research and
prioritize funding for diabetes prevention to help stop the diabetes
epidemic in our country. This is best accomplished by the Subcommittee
providing funding levels of $2.165 billion for the National Institute
of Diabetes and Digestive and Kidney Diseases (NIDDK) at the National
Institutes of Health (NIH), $185 million for the Division of Diabetes
Translation (DDT) at Centers for Disease Control and Prevention (CDC),
and $30 million for the National Diabetes Prevention Program (National
DPP) at CDC.
Over 30 million Americans live with diabetes and an additional 84
million Americans have prediabetes. I have spent my entire career-over
three decades-working with diabetes: researching the disease, teaching
and taking care of patients, and applying scientific discoveries to
practice. Endocrinologists like me are one part of an important team of
diabetes caregivers including nurses, nutritionists, educators, and
pharmacists. Together, this team works to help patients manage diabetes
so they avoid complications and lead relatively normal lives. Thanks to
the medical discoveries and advancements at the NIH and translational
research from the CDC diabetes care has advanced tremendously in recent
years.
Although insulin was discovered nearly a century ago, we are still
at the beginning of diabetes care. Newer insulins are available,
providing more options than we had in 1922, but we still see the impact
of the disease both in complications directly attributable to the
disease--blindness, kidney disease, amputations--and in problems
stemming from the stressors caused by the disease--increased
depression, divorce, and suicide of people with diabetes. Our impact is
not great enough, and better research into understanding and treating
diabetes is the only way to reverse the troubling impact of the
disease.
NIH is the single most important funding source for any researcher.
As an academic physician, I have served as an investigator on several
NIH-funded studies. These studies have led to better lives for people
with diabetes, but NIDDK does not have the funding to award grants for
every promising research opportunity. Two studies I have been involved
with include TrialNet, which looks at agents that can prevent type 1
diabetes and halt diabetes progression by preserving insulin production
early in the disease, and a Special Diabetes Program-funded (SDP) study
examining unusual and atypical diabetes. NIH research provides the best
hope both for those who have been living with diabetes for decades and
for those who are newly diagnosed. CDC's translational role in this
process cannot be understated. Federal investment in diabetes research
and the translation of that research has advanced diabetes care in the
decades of my practice, and continued investment is necessary.
The human cost of diabetes is significant. The lifetime risk for
developing diagnosed diabetes among U.S. adults is 40 percent. Today
alone, 4,110 Americans will be diagnosed with diabetes, diabetes will
cause 295 Americans to undergo an amputation, and 137 will enter end-
stage kidney disease treatment. In addition to the physical toll,
diabetes is economically devastating to our country and individuals
with the disease. Released in March 2018, ``Economic Costs of Diabetes
in the U.S. in 2017,'' found the total annual cost of diagnosed
diabetes in our country has skyrocketed by an astonishing 26 percent
over 5 years, to $327 billion--$237 billion in direct medical costs and
an additional $90 billion in reduced productivity. This is
unsustainable for our Nation, especially when 1 in 3 Medicare dollars
is already spent caring for people with diabetes. We also know that
people with diagnosed diabetes have healthcare costs 2.3 times higher
than those without diabetes. Despite the escalating physical and
economic cost of diabetes to our Nation and families, the Federal
investment in diabetes research and prevention programs at the NIH and
CDC still falls short of the need. The State of our Nation's diabetes
epidemic justifies increased Federal funding in fiscal year 2020.
background
Diabetes is a chronic disease impairing the body's ability to
utilize food. The hormone insulin, which is made in the pancreas, is
needed for the body to convert food into energy. In people with
diabetes, either the pancreas does not create insulin (type 1
diabetes), or it does not create enough insulin and/or cells are
resistant to insulin (type 2 diabetes). Diabetes results in too much
glucose in the blood stream. Blood glucose levels that are too high or
too low (because of medication to treat diabetes) can be life
threatening in the short term and cause long term complications like
kidney failure, blindness, and non-traumatic lower limb amputations.
Diabetes is also a leading cause of heart disease and stroke.
Additionally, up to 9.2 percent of pregnancies are affected by
gestational diabetes, a form of glucose intolerance diagnosed during
pregnancy that places both mother and baby at risk for complications
and for type 2 diabetes later in life. There are other rarer forms of
diabetes, including maturity-onset diabetes of the young (MODY) and
neonatal diabetes mellitus (NDM), both caused by a single gene
mutation. Individuals with prediabetes have higher than normal blood
glucose levels and are at risk for developing type 2 diabetes, but they
can lower that risk with lifestyle interventions. Diabetes does not
have a cure, and management is necessary every single day. People with
diabetes make over 300 decisions about their disease in a single day.
They must carefully balance what they eat, when they eat, when and how
much they exercise, and insulin injections constantly, knowing that one
decision impacts all of the others. In my experience, working as part
of a team--where the patient is the center and nurses, diabetes
educators, endocrinologists, dieticians, and sometimes mental health
professionals work together to manage care--results in the best outcome
for diabetes patients.
The National Institute of Diabetes and Digestive and Kidney
Diseases at NIH
The ADA requests funding of $2.165 billion for NIDDK in fiscal year
2020 to support new and existing research opportunities. NIDDK is
responsible for major research breakthroughs that have revolutionized
how diabetes is treated and managed in individuals with the disease.
People with diabetes can now use a variety of insulin formulations and
regimens far superior to those used in the past, which has
significantly reduced the risk for serious complications of diabetes--
but again, further research will lead to even better insulins. NIDDK
research has led to the development of continuous glucose monitors and
insulin pumps, which are life-changing management tools for patients.
As exciting as these advances are, there is even more promising
research that needs to be funded. Diabetes researchers across the
country are working on exciting proposals that can lead to our ultimate
goal--a cure for this devastating disease. With fiscal year 2020
funding of $2.165 billion, the NIDDK would be able to fund additional
investigator-initiated research grants to meet critical needs in areas
such as:
--Improving understanding of gestational diabetes, including optimal
gestational age to identify gestational diabetes, best method
to identify gestational diabetes, best treatment for
gestational diabetes, and later impact of gestational diabetes
on the health of mother and child,
--How to use and implement precision medicine in diabetes (e.g. NIH's
All of Us research campaign),
--How to better prevent and treat type 1 diabetes,
--Improving the treatment of diabetic foot ulcers to reduce
amputations,
--Understanding the relationship between diabetes and neuro-cognitive
conditions like dementia and Alzheimer's disease, and
--Discovering how drugs to treat diabetes may help those facing heart
disease and cancer.
the division of diabetes translation at cdc
The Federal Government's efforts to prevent diabetes and its
serious complications through the DDT and its evidenced-based,
outcomes-focused diabetes programs are essential. The DDT, whose
mission is to eliminate the preventable burden of diabetes through
research, education, and by translating science into clinical practice,
has a proven record of success in primary prevention efforts, as well
as programs to help those with diabetes manage their disease and avoid
complications. I use their work to advise patients daily.
The ADA urges Congress to provide DDT with $185 million in fiscal
year 2020. With these resources, the DDT will be able to continue
diabetes prevention activities at the State and local levels. Funding
will support these efforts through the State and Local Public Health
Actions to Prevent Obesity, Diabetes, and Heart Disease grants, with a
focus on improving prevention at the community and health system levels
in populations with highest risk for diabetes. It will support basic
and enhanced diabetes prevention efforts under the State Public Health
Actions grant program for cross-cutting approaches to prevent and
control diabetes, heart disease, and stroke. It will also enable the
DDT to expand its translational research activities to improve diabetes
prevention and continue its valuable diabetes surveillance work.
the national diabetes prevention program at cdc
It is alarming that 84 million Americans have prediabetes and are
on the cusp of developing type 2 diabetes. I practice in a diverse area
on the southside of Chicago, and we are not making enough of an impact
on this neighborhood. Like many places around the country, we have a
high rate of prediabetes. Programs such as the National DPP can make a
significant dent in the incidence diabetes in this high-risk
population. Nine of ten individuals with prediabetes do not know they
have it, and 15--30 percent of individuals with prediabetes develop
type 2 diabetes within 5 years. Managed by the CDC, the National DPP is
a public-private partnership of community organizations, private
insurers, employers, healthcare organizations, faith-based
organizations, and government agencies focused on type 2 diabetes
prevention.
The National DPP grew out of a successful NIDDK clinical study
showing weight loss of 5 to 7 percent of body weight, achieved by
reducing calories and increasing physical activity to at least 150
minutes per week, reduced risk of developing type 2 diabetes by 58
percent in people with prediabetes and by 71 percent for those over 60
years old. Additional translational research was then done, showing the
program also works in the less-costly community setting--at a cost of
about $425 per participant.
The National DPP supports a national network of local sites where
trained staff provides those at high risk for diabetes with cost-
effective, group-based lifestyle intervention programs. There are four
key components to the National DPP:
1. Community-based diabetes prevention sites where those at high
risk for diabetes attend the intervention program.
2. A national recognition program, coordinated by CDC, to establish
evidence-based standards for participating intervention sites
and provide the quality monitoring to ensure success.
3. Public and healthcare provider education efforts giving
trustworthy information on the availability of high-quality
diabetes prevention programs in communities so people
understand what they need to do when they are diagnosed with
prediabetes.
4. Informed referral networks so healthcare providers can refer
patients with prediabetes to the local intervention sites.
In 2016, the CMS Office of the Actuary found that seniors
participating in a National DPP program have Medicare costs that are
$2,650 lower than non-participants over a 15-month period. Through a
demonstration project administered by the YMCA, we know that this
program both improves health and lowers healthcare costs, positively
impacting our Nation's economy. Because of the tremendous cost-savings,
as of April 1, 2018, the National DPP is covered as a Medicare benefit
known as the Medicare DPP.
The ADA urges Congress to provide $30 million for the National DPP
in fiscal year 2020 to continue its nationwide expansion. This level of
funding for the National DPP will allow CDC to increase the number of
sites that offer this effective program--specifically in hardest-hit
communities, continue to manage its recognition program to ensure sites
follow the evidence-based curriculum and achieve the same high level of
results, and support programs as they become Medicare suppliers.
conclusion
The time to invest in diabetes research, education, and prevention
is now. We can and must continue to make progress; the 30.3 million
Americans with diabetes cannot wait. I urge the Subcommittee to make
decisions for fiscal year 2020 appropriations that reflect the
necessity of reversing the human and economic burden of this staggering
disease. I look forward to working with you and the ADA to stop
diabetes.
[This statement was submitted by Louis H. Philipson, MD, PhD, FACP,
President, Medicine & Science, American Diabetes Association.]
______
Prepared Statement of the American Educational Research Association
Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee; thank you for the opportunity to submit written testimony
on behalf of the American Educational Research Association. AERA
recommends that the Institute of Education Sciences (IES) within the
Department of Education receive $670 million in fiscal year 2020. This
recommendation is also consistent with the request from the Friends of
IES coalition, in which we are a leading member. In addition, AERA
recommends $1.6 billion in fiscal year 2020 for the Eunice Kennedy
Shriver National Institute of Child Health and Human Development
(NICHD).
AERA is the major national scientific association of 25,000
faculty, researchers, graduate students, and other distinguished
professionals dedicated to advancing knowledge about education,
encouraging scholarly inquiry related to education, and promoting the
use of research to improve education and serve the public good. Our
members as well as State and Federal policymakers and practitioners
rely on IES to provide and support reliable education statistics, data,
research, and evaluations.
IES is the independent and nonpartisan statistics, research, and
evaluation arm of the U.S. Department of Education charged with
supporting and disseminating rigorous scientific evidence on which to
ground education policy and practice. While located within the
Department of Education, the mission of IES is more closely aligned
with other Federal research agencies such as the National Science
Foundation and the National Institutes of Health.
We see numerous examples of bipartisan support for scientific
research and evidence-based decisionmaking. Last year, Congress passed
the Foundations of Evidence-Based Policymaking Act, directing Federal
agencies to leverage data and evaluations for informing policy
decisions. States and school districts are continuing to implement the
Every Student Succeeds Act, which encourages selecting evidence-based
interventions that best support student needs and foster school
improvement. The re-introduction in this Congress of the College
Transparency Act also demonstrates a commitment to provide additional
data for students seeking information on colleges, financial aid, and
outcomes. These improvements to the data and research infrastructure
require additional funding necessitating action by your committee.
Now is a critical time to invest in education research, data, and
statistics to produce essential knowledge about education and learning
across all levels of education. It is both efficient and cost-effective
to drive policies, programs, and practices based on scientific evidence
and to continue to assess performance based on rigorous research.
Since IES was created in 2002, it has made visible scientifically-
based contributions to the progress of education. Take, for example,
IES supported-research at the Community College Research Center (CCRC)
that led to significant changes in the remedial education program in
the North Carolina Community College System. In a partnership between
the system and CCRC, there was a shift from remedial education toward
an accelerated structure of developmental education that increased
student retention and degree completion. At the same time, the money
saved from restructuring remedial education was reinvested into STEM
and high-demand technical education. Despite the potential of research
to inform key policy decisions, we have much left to do to provide
high-quality education to all of our students. In addition to old
questions that remain only partially answered--such as how to best
prepare teachers--we have barely begun to understand the opportunities
newly possible by advances in technology.
As States are moving forward implementing their Every Student
Succeeds Act (ESSA) State plans, they are increasingly depending on
their Statewide Longitudinal Data Systems (SLDS). Initially developed
to help States measure accountability to their students, data has
transformed from a hammer to a flash light, increasing understanding
about student performance and teacher effectiveness. To date, IES has
been unable to meet the State demand for SLDS grants. In 2015, only 16
of 43 States that submitted applications received grants. Those States
that have benefitted from SLDS grants have clear success to show from
the Federal investment. State leaders in Georgia and Mississippi have
testified in front of Congress about their use of SLDS to improve
student outcomes in their States.
I also want to bring to your attention the numerous ways that
Congress has signaled support for the use of education data in
decisionmaking. The most recent bipartisan, bicameral draft of the IES
reauthorization includes the continuation of SLDS. Eliminating SLDS
would act in direct contrast to the broad bipartisan support to
increase the use of data to inform policy decisions. Furthermore, cuts
to SLDS hurt States working to build data capacity at the same time
that ESSA is requiring States to make evidence-based decisions. Rather
than eliminating the SLDS program, AERA encourages this committee to
expand upon this very successful program. In addition, AERA opposes the
proposal to eliminate the Regional Educational Laboratories in the
fiscal year 2020 budget.
In addition to IES, AERA recommends $1.6 billion in fiscal year
2020 for the Eunice Kennedy Shriver NICHD, consistent with the Friends
of NICHD request. Funding for NICHD supports research at the
intersection of health and education, including the genetic and
behavioral risks for child obesity, the use of opioids by mothers and
potential impact on infant and child brain development, and
interventions for students with learning disabilities who struggle with
reading. This investment in NICHD will allow the institute to align
resources as part of its ongoing strategic planning process, continue
research to both increase understanding of the impact of opioid use
across the educational lifespan and to reduce risk for addiction, and
to bolster the professional development of early career researchers.
Thank you for the opportunity to submit written testimony in
support of $670 million for IES and $1.6 billion for NICHD in fiscal
year 2020. AERA welcomes working with you and your subcommittee on
strengthening investments in essential research, data, and statistics
related to education and learning.
[This statement was submitted by Felice J. Levine, PhD, Executive
Director, American Educational Research Association.]
______
Prepared Statement of the American Foundation for Suicide Prevention
My name is John H. Madigan, Jr. and I am the Senior Vice President
and Chief Public Policy Officer for the American Foundation for Suicide
Prevention (AFSP). I am pleased to submit this written testimony today
on behalf of our almost 30,000 Field Advocates nationwide, and the
thousands of individuals who participate in our Out of the Darkness
Walks each year. AFSP has Chapters in all 50 States and sponsors a
variety of events and programs across the country each year. In
addition to raising to raising funds for research, education, and
advocacy, our Chapters also disseminate resources and programs in their
communities. This written testimony includes information that outlines
the suicide crisis in the United States and information about each of
AFSP's recommendations to the Subcommittee for fiscal year 2020.
Suicide is a major public health crisis in the United States.
Suicide is the 2nd leading cause of death for ages 10-34, the 4th
leading cause of death for ages 35-54, and the 10th leading cause of
death overall in the United States. Every year over 10 million people
seriously consider suicide, over 1 million attempt suicide, and in 2017
we lost over 47,000 Americans to suicide. Each of these individuals
lost to these preventable deaths are survived by tens of thousands of
family, friends, and community members. Despite such a high rate of
incidence and despite nearly 1-in-5 Americans living with a mental
health condition, more than half of those individuals won't seek
treatment due to poor public access to suicide prevention and treatment
resources, sparse and inadequate mental health services, and deeply
entrenched stigma. The most recent data from the Centers for Disease
Control and Prevention (CDC) confirmed that suicide rates are rising in
the United States. Suicide deaths across the country increased over 30
percent since the turn of the century and continue to do so every year.
AFSP believes Congress must prioritize suicide prevention research,
programs, and education at funding levels commensurate with other
leading causes of death in the United States. We thank the
Subcommittee, Chairman Blunt and Ranking Member Murray for this
opportunity. Please find below AFSP's recommendations on funding and
report language for the Subcommittee to consider for fiscal year 2020.
Suicide Prevention Programs at SAMHSA need a greater investment
towards crisis and support services for suicide prevention activities
throughout the country. These programs include:
The National Suicide Prevention Lifeline (1-800-273-8255), one of
SAMHSA's most effective and far reaching suicide prevention
initiatives, which provides free 24/7 confidential support and
resources for individuals experiencing distress, as well as prevention,
education, and best practices for professionals. The Lifeline was
funded at $12 million in fiscal year 2019 and the President's fiscal
year 2020 budget proposes keeping the Lifeline at that same funding
level. AFSP proposes an increase of $13 million, for a total of $25
million for the National Suicide Prevention Lifeline program to ensure
more dedicated funding can be directed to the States with the lowest
answer rates and with the highest need, and for national initiatives to
better improve Lifeline quality and services.
--Fiscal Year 2019 actual: $12 million
--Fiscal Year 2020: $25 million--proposed
--Proposed Report Language: ``National Suicide Prevention Hotline.--
The Committee is concerned with the growing number of suicide
deaths in the United States. According to data released by CDC,
nearly 45,000 lives were lost to suicide in 2016. Data also
shows that suicide rates went up more than 30 percent in half
of the States since 1999 and that nearly every State saw a rate
increase of some kind. The Committee urges SAMHSA to continue
its commitment to the National Suicide Prevention Lifeline
program, which plays a key role in suicide prevention. Further,
the Committee requests that SAMHSA report to the Committees on
Appropriations of the Senate and House within 6 months from the
date of enactment on the level of funding required to meet the
needs of the hotline, given the increases in the rates of
suicide and suicide attempts, and increased awareness and use
of the hotline.''
The Garrett Lee Smith--Suicide Prevention Resource Center supports
the National Action Alliance for Suicide Prevention's (Action Alliance)
efforts nationwide to advance the implementation of the National
Strategy for Suicide Prevention. The National Strategy for Suicide
Prevention is the result of a joint effort by the Office of the U.S.
Surgeon General and the Action Alliance, intended to guide suicide
prevention actions in the United States over the next decade. It
outlines four strategic directions with 13 goals and 60 objectives that
are meant to work together synergistically to prevent suicide in the
Nation.
--Fiscal Year 2019 actual: $5,988,000
--Fiscal Year 2020: $8,488,000--proposed
--Proposed Report Language: ``The Committee is encouraged by the
significant accomplishments achieved by the National Action
Alliance for Suicide Prevention (Action Alliance), a public-
private partnership to advance suicide prevention efforts in
the United States. The Committee authorizes and appropriates
$8.5 million for the Garrett Lee Smith (GLS) suicide prevention
resource center. Of which, $2.5 million of this funding will
support the Action Alliance's collective national efforts to
advance implementation of the National Strategy for Suicide
Prevention.''
Suicide prevention research conducted at the National Institute of
Mental Health (NIMH) will allow for better understanding, treatment and
prevention of suicidality. NIMH has awarded grants totaling roughly $69
million over the last year on direct suicide prevention research, and
while this is a step in the right direction, we believe that more can
be done given the increasing rate of suicide across our country. AFSP
is the largest funder for suicide prevention research outside of the
Federal Government and much of what is known about suicide comes from
studies that AFSP has helped sponsor. Our studies open up new areas of
inquiry, and our council of scientific advisors helps set the national
research agenda. We urge Congress to make a concerted, purposeful
investment in suicide prevention research, and join our efforts in
reversing the trend of this ever-worsening public health issue.
--Proposed Report Language: ``The Committee is increasingly concerned
with the high and growing incidence of suicide across the
country, and directs the National Institutes of Mental Health
to increase suicide prevention research over fiscal year 2019
levels. NIMH is encouraged to utilize information and insights
from the Action Alliance for Suicide Prevention and other
sources when making recommendations for this vital area of
research.''
The Core State Violence and Injury Prevention Program (Core SVIPP)
in the National Center for Injury Prevention and Control (NCIPC) at the
CDC. Injuries and violence are the leading causes of death during the
first four decades of life, regardless of gender, race or socioeconomic
status. The inclusion of this dedicated funding through the National
Center for Injury Prevention and Control would contribute in a
meaningful way to suicide prevention by empowering States to implement,
evaluate, and disseminate effective violence and injury prevention
programs and policies.
--Fiscal Year 2019: $6.7 million
--Fiscal Year 2020: $16.7 million--proposed
We thank you for your consideration and hope that Congress is
willing to make greater investments in suicide prevention and crisis
services. The American Foundation for Suicide Prevention is dedicated
to saving lives and bringing hope to those affected by suicide. AFSP
creates a culture that's smart about mental health through education
and community programs, develops suicide prevention through research
and advocacy, and provides support for those affected by suicide.
Please let me know if you or any of your staff have any additional
questions.
[This statement was submitted by John H. Madigan, Jr., Senior Vice
President and Chief Public Policy Officer, American Foundation for
Suicide Prevention.]
______
Prepared Statement of the American Geriatrics Society
The American Geriatrics Society (AGS) greatly appreciates the
opportunity to submit this testimony. The AGS is a non-profit
organization of nearly 6,000 geriatrics healthcare professionals
dedicated to improving the health, independence, and quality of life of
all older Americans. As the Subcommittee works on its fiscal year 2020
Labor-HHS 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)/National Institute on Aging (NIA).
We are deeply disappointed with proposed cuts to geriatrics
training and aging research outlined by President Trump in his budget
plan for fiscal year 2020, and are concerned about what these cuts will
mean for the care and health of older adults. The President's budget
zeros out funding for the geriatrics training programs under Title VII,
which support the Geriatrics Workforce Enhancement Program (GWEP) and
the Geriatrics Academic Career Award (GACA) Program. Additionally, the
budget proposal cuts $429 from the NIA which could stymie important
progress on treating and preventing the health conditions older
Americans face with growing frequency.
We urge you to reject this proposal, and ask that the Subcommittee
consider the following funding levels for these programs in fiscal year
2020:
--$51 million to support the Geriatrics Workforce Enhancement Program
and the Geriatrics Academic Career Award Program (PHS Act Title
VII, Sections 750 and 753(a))
--An increase of $500 million over the enacted fiscal year 2019 level
for aging research across the NIH, in addition to the funding
allocated for Alzheimer's disease and related dementias
Sustained and enhanced Federal investments in these initiatives are
essential to delivering high quality, better coordinated, and more cost
effective care to 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 will more than double
between 2014 and 2060 to 98.2 million or 23.5 percent of the
population; and those 85 and older will increase threefold to 19.7
million.\1\ 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.
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\1\ Colby SL, Ortman JM. Projections of the Size and Composition of
the U.S. Population: 2014 to 2060, Current Population Reports, P25-
1143, U.S. Census Bureau, Washington, DC, 2014.
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programs to train geriatrics healthcare professionals
Geriatrics Workforce Enhancement Program and Geriatrics Academic Career
Award Program ($51 million)
Our Nation is facing a critical shortage of geriatrics faculty and
healthcare professionals across disciplines. This trend must be
reversed if we are to provide our seniors with the quality care they
need and deserve. Care provided by geriatrics healthcare professionals,
who are trained to care for the most complex and frail individuals, has
been shown to reduce common and costly conditions--such as falls,
polypharmacy, and delirium--that are often preventable with appropriate
care.
The GWEP is currently the only Federal program designed to increase
the number of providers, in a variety of disciplines, with the skills
and training to care for older adults. The GWEPs educate and engage the
broader frontline workforce including family caregivers and focus on
opportunities to improve the quality of care delivered to older adults,
particularly in underserved and rural areas. The GWEP program was
launched in 2015 by HRSA with 44 3-year grants provided to awardees in
29 States. In November 2018, HRSA released a new funding opportunity
and announced that they anticipate funding 47 GWEPs for 5 years
starting July 1, 2019.
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
that is intended to increase the number of faculty with geriatrics
expertise in a variety of disciplines. The program was eliminated in
2015 through a consolidation of several training programs. However, the
program was reestablished in November 2018 when HRSA released a funding
opportunity indicating their intention to fund 26 GACAs for 4 years
starting September 1, 2019. Since 1998, original GACA recipients have
trained as many as 65,000 colleagues in geriatrics expertise and have
contributed to geriatrics education, research, and leadership across
the U.S.
At a time when our Nation is facing a severe shortage of both
geriatrics healthcare providers and academics with the expertise to
train these providers, the AGS believes the number of educational and
training opportunities in geriatrics and gerontology should be
expanded, not reduced. To address this issue, we ask the Subcommittee
to provide a fiscal year 2020 appropriation of $51 million for the
GWEPs and GACAs. This small increase in funding over fiscal year 2019
levels would help ensure that HRSA receives the funding necessary to
carry these critically important programs forward. Additional funding
will also allow HRSA to expand the number of GWEPs and GACAs and move
towards closing the current geographic and demographic gaps in
geriatrics workforce training.
research funding initiatives
National Institutes of Health (additional $500 million over fiscal year
2019)
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 a minimum
increase of $500 million over the enacted fiscal year 2019 level in the
fiscal year 2020 budget for biomedical, behavioral, and social sciences
aging research efforts across the NIH. The AGS also supports an
additional $350 million specific to research on Alzheimer's disease and
related dementias (ADRD), resulting in an NIH-wide dementia research
budget of at least $2.69 billion in fiscal year 2020.
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 with ADRD is
estimated to reach 13.8 million--more than double the number in 2019--
and is projected to cost more than $1.1 trillion (in 2019 dollars).\2\
Further, chronic diseases related to aging, such as diabetes, heart
disease, and cancer continue to afflict 80 percent of people age 65 and
older and account for more than 75 percent of Medicare and other
Federal health expenditures.\3\ Continued and increased Federal
investments in scientific research will ensure that the NIH and NIA
have the resources to conduct groundbreaking research related to the
aging process, foster the development of research and clinical
scientists in aging, provide research resources, and communicate
information about aging and advances in research on aging.
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\2\ Alzheimer's Association. 2019 Alzheimer's Disease Facts and
Figures. Alzheimers Dement 2019;15(3):321-87.
\3\ National Council on Aging. Chronic Disease Self-Management
Facts. https://www.ncoa.org/news/resources-for-reporters/get-the-facts/
chronic-disease-facts/. Accessed April 18, 2018.
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Additionally, the AGS supports the Ad Hoc Group on Medical Research
recommendation to appropriate at least $41.6 billion in fiscal year
2020 for the NIH, including funds provided through the 21st Century
Cures Act for targeted initiatives. We believe that a meaningful
increase in NIH-wide funding, in combination with aging and ADRD
specific increases, will be essential to sustain the research needed to
make progress in addressing chronic disease, ADRD, and other diseases
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 thank the
Subcommittee for the opportunity to submit this testimony.
______
Prepared Statement of the American Heart Association
On behalf of our 40 million volunteers and supporters, the American
Heart Association (AHA) thanks Congress for its ongoing and strong
commitment to the National Institutes of Health (NIH) and Centers for
Disease Control and Prevention (CDC). We appreciate that Congress has
repeatedly emphasized the need to focus resources on diseases that
create the largest health and economic burden. We are concerned,
however, that heart disease and stroke research and prevention continue
to be underfunded compared to the devastating burden they inflict on
Americans.
Although advances in research and prevention have produced large
reductions in mortality, cardiovascular disease (CVD) stubbornly
remains the leading cause of death and disability in the United States,
affecting 121.5 million Americans and accounting for 1 in every 6
healthcare dollars spent. Recent data shows that nearly half (48
percent) of U.S. adults have some form of cardiovascular disease. Even
more troubling, the overall decline in population mortality rates for
CVD is slowing with actual increases for some groups. As our Nation's
population ages, there is an urgent need for action to improve
innovation in the treatment of CVD.
Currently, the NIH invests only 4 percent of its budget on heart
research, 1 percent on stroke research, and a meager 2 percent on other
forms of CVD research. AHA urges Congress to fund CVD in proportion to
the burden of these deadly yet preventable diseases. Low research
funding creates a weak pipeline for CVD and cardiometabolic drugs
compared with other specialties such as oncology and central nervous
system drugs. Only one new CVD drug was approved in 2017. In
comparison, the development of oncology-focused drugs or biological
products was nearly seven times greater than that of cardiovascular
products. Placing the highest burden on our Nation's health and
economy, heart disease, stroke and other forms of cardiovascular
disease remain our Nation's top killer and most expensive disease,
costing nearly $1 billion a day. This cost is projected to reach over
$1 trillion a year by 2035. The American Heart Association calls on
Congress to respond to the challenges presented by cardiovascular
disease by providing robust funding for the NIH and CDC heart disease
and stroke programs.
National Institutes of Health (NIH) Driver of Scientific Discovery and
Economic Prosperity
Robust NIH-funded research helps prevent and cure disease,
transforms patient care, propels economic growth, drives innovation,
and preserves U.S. leadership in pharmaceuticals and biotechnology. NIH
continues to be the world's leader of basic research--the basis for all
medical progress and a basic Federal Government role the private sector
cannot emulate. Unfortunately, our country's competitive edge in
research has been eroded recently by inadequate resources.
Specifically, the U.S. has fallen out of the top 10 in innovation and
China is on the path to surpass our Nation in spending on science
research and development.
In addition to enriching health, NIH generates a strong return on
investment. In 2018, NIH supported more than 433,000 U.S. jobs and
nearly $74 billion in economic activity in every State and in nearly
all congressional districts. Between 2010-2016 NIH research investments
led to 210 new medicines winning FDA approval and for every dollar
increase in public basic research an additional $8.38 of industry
research and development is stimulated. Yet, due to insufficient
funding, NIH lost over 20 percent of its purchasing power since 2003,
as other countries have boosted scientific investments, some by double
digits. Moreover, NHLBI extramural heart research dropped 22 percent in
constant dollars since 2003. This threatens to stall scientific
progress and could deter young scientists from pursuing careers in
research unless Congress acts now.
American Heart Association Advocates: We urge Congress to
appropriate $41.6 billion to the NIH giving it a funding boost that
will help restore its purchasing power and enhance heart and stroke
research.
Cardiovascular Disease Research: National Heart, Lung, and Blood
Institute (NHLBI)
NHLBI research has produced declines in CVD death rates, yet,
present funding is not commensurate with CVD burden, nor does it let
scientists build on investments that have led to key advances. For
example, a clinical trial showed a systolic blood pressure of 120 mm Hg
in adults over age 50 cut heart attack, heart failure, and stroke
events by almost a third and the risk of death by almost a quarter
compared to the standard treatment target of 140 mm Hg. Adoption of
these targets could save over 100,000 lives. Other life-saving research
recently supported by NHLBI includes a study to improve postsurgical
management for two common heart defects. The new practices cut the
typical amount of time infants spent with a breathing tube by nearly 80
percent. In addition, NHLBI's long-running population-based cohort
studies have made major contributions to understanding the causes of
and prevention strategies for heart and vascular diseases. These
studies continue to drive discovery by uncovering new links between CVD
and brain health.
Stroke Research: National Institute of Neurological Disorders and
Stroke (NINDS)
Stroke continues to inflict a massive burden on our Nation's long-
term health and economic stability. An estimated 795,000 Americans will
suffer a stroke this year, and more than 142,000 will die. Many of the
7 million survivors face grave physical, mental, and emotional
distress. Stroke costs an estimated $45.5 billion in medical expenses
and lost productivity annually. Projections also show that stroke's
medical direct costs will more than double by 2035.
Budget increases for the BRAIN initiative, pain research, and
Alzheimer's Disease and related dementias are helping to advance stroke
science through collaborative efforts among several Institutes. For
example, NINDs is working closely with the National Institute on Aging
to support research on vascular contributions to cognitive impairment
and dementia. This research is critical to helping our Nation prepare
for the demands of an aging population and should be increased. Other
examples of promising research include a possible link between a high
sodium diet and dementia; brain injections post-stroke that could help
repair salvageable brain tissue; and the identification of new and
effective therapies for stroke recovery and rehabilitation.
In addition, new clinical trials will help determine if intense
rehabilitation given to babies who suffer a stroke during the perinatal
period improves their impaired mobility and enhances their
developmental growth. Other promising work includes a study comparing
mechanical clot removal versus standard medical care in stroke
patients; a promising new combination drug therapy for individuals
suffering from transient ischemic attack (TIA); and population-based
studies that are assessing stroke risk and burden in diverse
populations.
American Heart Association Advocates: We recommend that NHLBI be
funded at $3.71 billion and NINDS at $2.419 billion.
Preventing Cardiovascular Disease: Centers for Disease Control and
Prevention (CDC)
Cardiovascular disease is largely preventable--and most preventable
deaths are the result of cardiovascular conditions. Yet, risk factors
such as increasing prevalence of diabetes mellitus, childhood obesity,
and hypertension rates are rising. Additionally, the use of e-
cigarettes that include the addictive substance nicotine, has reached
an epidemic level. Despite this evidence, CVD prevention programs at
the Centers for Disease Control including the Division for Heart
Disease and Stroke Prevention, WISEWOMAN, and Million Hearts have been
level-funded at best in the face of very promising results from these
prevention initiatives.
Over the last 5 years, the Million Hearts program has implemented
effective strategies that have prevented an estimated 500,000 heart
attacks and strokes and is well on its way to achieving the ultimate
goal of preventing a million CVD deaths by 2022. Similarly, WISEWOMAN
has helped nearly 226,461 uninsured or underinsured women reduce their
risk of CVD through preventive screenings that promote lasting, healthy
behavior change. Between 2014-2017 the program identified nearly 4,000
previously undiagnosed women with having the condition of high blood
pressure--a leading risk factor for heart attack and stroke. These
prevention programs need more support to address the difficulty
Americans face in modifying risk factors for CVD--particularly among
the less educated, financially disadvantaged, and those living in rural
areas of the United States.
American Heart Association Advocates: We join the CDC Coalition in
asking for $7.8 billion for CDC. The association requests $160 million
for the DHDSP to expand heart disease and stroke prevention efforts in
State, local, and Tribal public health departments; enhance
surveillance for stroke and sudden cardiac arrest; and support
implementation research. We ask for $45.6 million to expand WISEWOMAN
to all states, territories and the District of Columbia. We further
recommend $5 million for Million Hearts 2022 to continue implementation
of the ABCS of heart health (Aspirin when appropriate, Blood pressure
control, Cholesterol management, and Smoking cessation), develop
innovative scalable ways for communities and the healthcare sector to
execute evidence-based prevention among high priority populations, and
to continue efforts to increase the use of cardiac rehabilitation.
[This statement was submitted by Ivor J. Benjamin, M.D., President,
American Heart Association.]
______
Prepared Statement of the American Indian Higher Education Consortium
On behalf of the Nation's 37 Tribal Colleges and Universities
(TCUs), which collectively are the American Indian Higher Education
Consortium (AIHEC), we thank you for the opportunity to share our
fiscal year 2020 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):
$65,000,000
(discretionary)
--Perkins Career and Technical Education Programs (Sec. 117):
$10,000,000
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
--Substance Abuse and Mental Health Services Administration, SAMHSA
--TCU Centers of Excellence: $10,000,000
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 TCU students represent at least 233 of the 573 federally
recognized Tribes and hail from more than 30 States. Nearly 80 percent
receive Federal financial aid. 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 in
any amount to even one TCU program would force TCUs to scale back vital
programs and services that students rely on to complete degree and
certificate programs needed to succeed in their chosen career paths.
Any reduction in funding will threaten TCU accreditation status and
will further stretch overtaxed faculty and staff or result in cuts to
faculty and staff. The following are justifications for TCU fiscal year
2020 funding requests.
u.s. department of education
Strengthening Tribal Colleges (HEA Title III--Part A--Section 316):
TCUs urge the Subcommittee to provide discretionary funding for
Strengthening Tribal Colleges program (HEA Title III-Part A) at
$65,000,000 in fiscal year 2020.
The Strengthening Institutions HEA Title III program for TCUs
(Section 316) is specifically designed to address the critical, unmet
needs of AI/AN students and their communities. Through this program,
TCUs are able to provide student support services, native language
preservation, basic upkeep of campus buildings and infrastructure,
critical campus expansion, enterprise management systems, faculty for
core courses, and other necessary elements for a quality educational
experience. The Strengthening Institutions program provides formula-
based aid to 35 TCUs through two funding sources: Part A discretionary
funding (fiscal year 2019, $31.9 million) and Part F mandatory funding
(fiscal year 2019, $28.1 million). While TCUs have received Part A
(discretionary) funding since 1998, the Part F (mandatory) formula-
based funding received by TCUs over the past 9 years has allowed each
TCU to expand vital services truly needed for student success. The Part
F (mandatory) funding was established in 2007 by the College Cost
Reduction and Access Act (20 U.S.C. 1067q) and authorized through
fiscal year 2019 to fund TCUs and other Minority Serving Institutions.
Without Congressional action, the Part F program will expire at the end
of fiscal year 2019 resulting in catastrophic losses to TCUs and their
communities. In response to the expiration of the Part F program, we
strongly urge the Subcommittee to fund the Strengthening Institutions
HEA III Part A--TCU Program (Section 316) at $65,000,000 million. (This
request for Part A funding at $65 million offsets the termination of
the Part F program.)
Carl D. Perkins Career and Technical Education Programs
Tribally Controlled Postsecondary Career and Technical
Institutions: AIHEC requests $10,000,000 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
vitally needed 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.
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.
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 (Region
11), and only 70 percent of workers in Region 11 met the associate-
level requirements, or were enrolled in associate programs, compared to
90 percent nationally. TCUs are the most cost-effective way for filling
this inexcusable 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's 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. Bay Mills Community College provides online
education programming for $50/credit to Head Start staff nationwide.
However, many Head Start programs are paying far more for other sources
to provide training. With the restoration of this modestly funded
program, TCUs can aid in building an early childhood education
workforce to better serve the education needs of our AI/AN children.
Substance Abuse and Mental Health Services Administration (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 well-skilled and culturally competent AI/AN behavioral health
workforce by developing an apprenticeship-based network of TCUs and
partners from the health industry and local, Tribal, State, and
regional providers. The TCU Centers of Excellence would share best
practices in curriculum development, program implementation, and
apprenticeships; recruit students to careers in behavioral health
fields to address mental and substance use disorders; provide training
that can lead to careers in the behavioral health fields; and prepare
students for achieving credentials in behavioral health fields. The TCU
Centers of Excellence would emphasize education, awareness, workforce
training, and preparation for careers in mental and substance use
treatment, prevention, and research, including addressing opioid abuse
prevention, opioid use disorder treatment, serious mental illness, and
suicide prevention.
National Institute of Health (NIH)--Native American Research
Centers for Health (NARCH), AIHEC NARCH--TCU Behavioral Health
Initiative. AIHEC requests robust funding to continue the Native
American Research Centers for Health (NARCH) program.
Historical trauma is a reality affecting many of the 5.2 million
AI/ANs living in this country. The answers leading to effective
solutions to remedy the generational impact of historical trauma must
come from within Tribal communities. TCUs are the best resource to
implement essential research to find these answers. The AIHEC NARCH
Behavioral Health Initiative is a 5-year project launched in 2013 to
build Tribal research capacity in behavioral health through cohorts of
competitively selected TCUs engaging in professional development,
community-based participatory research, and research partnerships with
Tribes and research institutions. Since 2013, three cohorts, a total of
14 TCUs, have participated in the initiative. Major accomplishments
include the development of a 17-credit Indigenous research methodology
graduate certificate, specialized training session for Tribal
institutional review boards to examine the nuances of research in
Indian Country, and five annual behavioral health research institutes.
TCUs are beginning to help define research within their communities and
train AI/AN student researchers by laying a solid foundation for
tribally driven and tribally directed research that will improve the
lives and well-being of Native communities.
conclusion
Tribal Colleges and Universities provide access to high quality,
culturally appropriate postsecondary education opportunities, including
critical early childhood education and behavior health programs, for
thousands of AI/AN students and their families. The modest Federal
investment in TCUs has paid great dividends in terms of employment,
education, and economic development. We ask you to renew your
commitment to help move our students and communities toward self-
sufficiency and request your full consideration of our fiscal year 2020
appropriations requests. Thank you.
______
Prepared Statement of the American Library Association
The American Library Association (ALA) urges the Subcommittee to
include in its fiscal year 2020 appropriations bill at least $206
million for programs under the Library Services and Technology Act
(LSTA) administered by the Institute of Museum and Library Services
(IMLS), and at least $29 million for the Innovative Approaches to
Literacy (IAL) program under the Department of Education.
On behalf of ALA, I want to thank the Subcommittee for the
opportunity to provide comments in support of these two important
programs. ALA has been the trusted voice for academic, public, school,
government and special libraries for more than 140 years, advocating
for the profession and the library's role in advancing learning and
ensuring access to information for all. Modest investments in both the
LSTA and IAL programs are critical to achieving our mission.
LSTA is the only source of dedicated Federal funding for the more
than 120,000 libraries across the Nation. The LSTA Grants to States
program ensures that every State has access to needed library and
information resources and the power to determine how to use them. LSTA
funding of at least $206 million will support libraries in every State.
If you haven't been to a library recently, we urge you to visit
your local library and see for yourself the range of services they
provide your constituents, including early learning and literacy
support, jobs and career development, small business assistance, access
to government information, and building Internet and computing skills.
Libraries also support people with print disabilities by providing
content that is accessible in both print and digital forms.
The bulk of LSTA funds are distributed to each State through the
IMLS according to a population-based grant formula. Each State must
provide a 34 percent match and determines at the State level how to
meet local needs and best allocate its LSTA grant awards. Libraries
have used LSTA funding for a broad range of diverse and innovative
programs that profoundly touch and better the lives of tens of millions
of Americans in every State in the Nation, including particularly
service to people with disabilities, veterans, and job seekers. LSTA is
truly a local decisionmaking success story and a shining example of how
a small Federal investment can be efficiently and reliably leveraged
into dramatic State and local social and economic results.
Lawmakers agree. Garnering bipartisan and bicameral support, the
Museum and Library Services Act to reauthorize IMLS until fiscal year
2025 was signed into law in December 2018. In the 2018 reauthorization,
Congress strengthened LSTA to support data-driven tools to tailor
services to local needs; help libraries prepare for and provide
services after a disaster or emergency; improve services for Native
Americans; and recruit and train library and information science
professionals from a broad range of backgrounds. The new law also
enables increases in the Grants to States program to be shared more
broadly across States, while ensuring no State loses funding. Given
this strong congressional backing, ALA supports these newly authorized
changes to the Grants to States program, which required an additional
$17 million to implement the new formula included in the LSTA
reauthorization.
Here are just a few current examples among many thousands made
possible by LSTA over time:
--The Missouri State Library used LSTA funds to support makerspace
programs. The Nevada, MO, library received a grant for its Next
Level Makerspace for patrons aged 12--19. This program teaches
teens to produce audio and video projects, create with
textiles, experiment with technology and circuitry, and explore
culinary creations, and build projects in its Engineer Zone.
--Washington State Library directed an LSTA grant to the Washington
State Penitentiary Library--West Complex to serve inmate-
populations. The grant supports delivery of information
services to inmates, including material for reentry, recovery,
education and recreation. The grant provides resources for
inmates to make positive changes in their lives.
--The Rhode Island Talking Books Library makes it possible for
residents who are blind, visually impaired or physically
disabled to receive library materials in accessible formats for
free. The State provides services as a regional library for the
blind and physically handicapped, coordinating access to and
delivery of reading materials for people who are not able to
read traditional print material.
--The Oklahoma Department of Libraries procured access to a powerful
suite of databases on business, health, and education which are
available to all public State libraries. Oklahomans performed
more than 50 million information searches on these databases.
--California public libraries, in partnership with California
Department of Veterans Affairs, are working to connect veterans
and their families to benefits and services for which they are
eligible. Libraries can positively impact the quality of life
for veterans.
Libraries are essential to America's communities, and the services
they offer provide economic opportunity and make individual success
within everyone's reach. The direct beneficiaries of the LSTA Grants to
States program administered by IMLS include veterans, entrepreneurs,
job seekers, taxpayers, children, and many others throughout our
Nation. In addition, thanks to LSTA and other IMLS funds, many State
libraries can support Libraries for the Blind and Physically
Handicapped or Talking Book services, which provide access to reading
materials in alternate formats. There is no dedicated Federal funding
stream for these individuals at the local and State level. LSTA Grants
to States funding often fills this need.
ALA respectfully submits that there can be few, if any, more
democratic, cost-effective and impactful uses of Federal dollars than
LSTA in the entirety of the Federal budget. The unfortunate truth is
that the administration's proposal to eliminate LSTA funding, in fact
any cut to LSTA, will jeopardize vital and highly cost-effective
programs that benefit millions of Americans in every State, and help
build our economy one job and one community at a time. Accordingly, ALA
asks that the Subcommittee provide at least $206 million for LSTA in
fiscal year 2020 to ensure that Americans of all ages continue to have
access to important resources at their local library.
In addition to supporting LSTA, ALA also asks that you maintain the
modest, but critical Federal investment of $29 million in the
Innovative Approaches to Literacy (IAL) program. Authorized under the
Every Student Succeeds Act, IAL provides competitive awards to school
libraries and national not-for-profit organizations. including
partnerships that reach families outside of local educational agencies,
to put books into the hands of children and their families in high-need
communities.
Studies have shown that early childhood learning is directly
correlated to success in K-12 and college education and in careers. For
families living in poverty, access to reading materials is severely
limited, which hinders their ability to prepare for school and to stay
on track. IAL helps bridge that gap. IAL supports parental engagement
in their children's reading life and focuses on promoting student
literacy from birth through high school. IAL grants have been awarded
during the life of the program to almost every State in the Nation.
Schools across the country have received grants, including the Lane
Elementary School (OK), Shelby County Board of Education (TN), New
Visions Middle School (CA), and Jefferson Davis County School District
(MS), as well as many others.
Providing books for children with meager opportunity is crucial to
their learning to read, which is crucial to their--and the Nation's--
economic futures. Accordingly, we urge the Subcommittee to invest in
literacy by continuing to provide at least $29 million for IAL.
ALA understands the tight fiscal constraints on the Subcommittee,
and we appreciate its continued dedicated support of LSTA and IAL.
Thank you for your commitment to sustaining and strengthening our
communities and our Nation by supporting America's libraries.
[This statement was submitted by Kathi Kromer, Associate Executive
Director, American Library Association.]
______
Prepared Statement of the American Liver Foundation
summary of fiscal year 2020 appropriations recommendations
_______________________________________________________________________
--Please provide the National Institutes of Health (NIH) with a
funding increase of at least $2.5 billion for fiscal year 2020
to bring total agency funding up to a minimum of $41.6 billion
annually.
--Please provide proportional increases for NIH Institutes and
Centers, including the National Institute of Diabetes and
Digestive and Kidney Diseases (NIDDK) and the National
Institute of Allergy and Infectious Diseases (NIAID), which
lead key research portfolios
--Please provide the Centers for Disease Control and Prevention (CDC)
with a funding increase of at least $500 million in
discretionary resources to bring total agency funding up to a
minimum of $7.8 billion annually.
--Please provide at least $250,000 in programmatic funding to
initiate a new liver cancer awareness and education effort at
CDC's National Center for Chronic Disease Prevention and Health
Promotion.
--Please provide between $40 million (the authorized funding level)
and $58 million (the administration's requested level) for the
CDC's new Elimination Initiative focused on the nexus of the
opioid epidemic and the spike in infectious diseases.
--Please provide a meaningful fiscal year 2020 funding increase of
$11 million for the Division of Viral Hepatitis (DVH) at the
National Center for HIV/AIDS, Viral Hepatitis, STD, and TB
Prevention, to bring total funding up to $50 million annually.
--Please provide the Health Resources and Services Administration
(HRSA) with a funding increase to at least $8.56 billion for
fiscal year 2020.
--Please continue to support and encourage efforts to improve organ
donation and otherwise enhance the ability of donor livers for
individuals waiting on the transplant list for a donated liver.
_______________________________________________________________________
Thank you for the opportunity to submit testimony on behalf of the
American Liver Foundation (ALF) and the liver disease community. Before
we look forward to fiscal year 2020, we extend our thanks for the
significant investments in HHS, particularly NIH, provided for fiscal
year 2019. Please maintain this commitment and further enhance this
support for medical research and public health programs during the
fiscal year 2020 appropriations process. On behalf of the community,
thank you again for this ongoing support.
about the foundation
Founded in 1976, the American Liver Foundation (ALF) is the
Nation's largest patient advocacy organization for people with liver
disease. ALF reaches more than?2?million individuals each year with
health information, education and support services via its national
office,?16?U.S. divisions and an active online presence. Recognized as
a trusted voice for liver disease patients, ALF also operates a
national toll-free helpline (800-GO-LIVER), educates patients,
policymakers and the public, and provides grants to early-career
researchers to help find a cure for all liver diseases. ALF is
celebrating more than 40 years of turning patients into survivors. For
more information about ALF, please visit www.liverfoundation.org.
liver facts
The liver is one of the body's largest organs, performing hundreds
of functions daily including, removal of harmful substances from the
blood, digestion of fat, and storing of energy. Non-alcoholic fatty
liver disease (NAFLD), hepatitis C, and heavy alcohol consumption are
the most common causes of chronic liver disease or cirrhosis (severe
liver damage) in the U.S. Approximately 30 percent of adults and 3-10
percent of children have excessive fat in the liver or NAFLD which can
lead to a severe liver disease called non-alcoholic steatohepatitis
(NASH). Approximately 4.4 million Americans are living with Hepatitis B
or C but most do not know they are infected. More than 2 million
Americans are living with alcohol related liver disease. Approximately
5.5 million Americans are living with chronic liver disease or
cirrhosis. Vaccinations for hepatitis A and B and treatments for
hepatitis C are helping to change the course of this chronic life
altering disease for the patient community.
liver cancer public health at cdc
CDC hosts many important programs for cancer as well as chronic
disease, but none focused on addressing liver cancer. While liver
cancer is a leading killer, it is also preventable and more easily
managed if diagnosed early. The reality though is that risk factors are
not well known and there is an overall lack of public and professional
awareness about preventative practices and properly managing the
condition. CDC should have dedicated resources and congressional
encouragement to conduct liver cancer activities so this patient
community can enjoy the same benefits and public health improvements as
similar communities with ongoing CDC programs.
organ donation
Consistently, the number of organs available for transplantation on
an annual basis amounts to only a fraction of the number of patients on
the transplant list. Compounding this situation is the fact that fatty
liver disease affects a large and growing number of individuals and
makes livers unavailable for transplantation. Another complicating
factor is the fact that the rationing of cures for hepatitis ensures
that many patients who could otherwise be healthy end up on the
transplant list too and arbitrarily deny available organs to other
patients facing a variety of life-threatening illnesses. Please promote
organ donation and otherwise work to ensure Medicaid and other patients
impacted by hepatitis receive curative therapy when medically
appropriate.
the opioid epidemic
CDC has dubbed opioids and the infectious diseases that arrive in
the wake of the opioid crisis a ``dual epidemic''. Due to the rise in
rates of injection drug use, CDC has identified a 400 percent increase
in rates of hepatitis C among 20-29 year olds an 300 percent increase
among 30-39 year olds. Last year, the elimination initiative was
established at CDC, and the current budget request recommends greatly
enhancing support from $5 million to $58 million. Significantly
enhanced investment in this area is certainly warranted given the
ongoing need.
community stories
Our son Andrew was born September 30, 2013 with a genetic liver
disease called Alagille Syndrome. At 8 days old we started seeing a
liver specialist at Children's of Alabama. The first year was hard as
we did bloodwork several times a month trying to find a correct
diagnosis. When Andrew turned a year old we finally got the diagnosis
of Alagille Syndrome. The next 2 years would consist of lab work and
hospital stays. Andrew was officially listed for liver transplant in
June of 2017. On May 17, 2018 Andrew received his new liver! He was
able to come home on June 4th. Since then Andrew has done exceptionally
well with only one hospital stay. We still do monthly labs to keep a
check on his levels. He is in preschool and will be starting
Kindergarten this fall.
* * *
I never thought I would hear the words... ``you have liver cancer"
I felt healthy. I was training for a half marathon. I had a lot of
things to do. How could this be?
So, when a little shadow showed up on my liver during a test for
something else, it really seemed like nothing to worry about. After
all, I was 51 years old and-- as far as I knew-- I didn't have liver
disease.
But, I wanted to be sure so I had more tests. Before I knew it, I
was one of the tens of thousands of Americans who are diagnosed with
liver cancer each year.
The numbers for liver cancer are startling: In the U.S., liver
cancer rates have more than tripled since 1980 (while other cancers
have declined). Worldwide, liver cancer is the second leading cause of
cancer-related deaths.
An early diagnosis, medical breakthroughs and great doctors saved
my life!
Today, I am asking you to open your heart and help save others. If
we all do our part, we can defeat liver disease.
* * *
My name is Mary. I am a wife, mom, jewelry designer, lover of
books, baking, health, fitness, laughter, music and dance. Exploring
the world by traveling near and far and experiencing culture through
food, art, language and music are some of the things I am passionate
about! My wonderfully large, supportive, loving family and friends
bring huge delight to my life!
Thirty-four years ago, I had a blood transfusion during treatment
for Leukemia. It saved my life but also gave me Hepatitis C. After
years of trying many different forms of treatment, each with
unsuccessful results, my dream of being Hep C free has come true! The
arrival of new ``miracle'' medicine has brought me my long awaited
cure! I am elated and joyful!
Living with Hep C and the deep layers of fears, uncertainties and
loneliness that came with it, I experienced so many misconceptions
about the disease. This has made me acutely aware and passionate for
the need to educate, to share awareness and understanding within our
communities and beyond.
I look forward to the day when Hepatitis C will be eradicated and
we will have a chance to live a life with the hope of a future filled
with many healthy years.
[This statement was submitted by Tom Nealon, CEO, American Liver
Foundation.]
______
Prepared Statement of the American Lung Association
The American Lung Association is pleased to submit its
recommendations for fiscal year 2020 to the Labor, Health and Human
Services, and Education Appropriations Subcommittee.
The American Lung Association was founded in 1904 to fight
tuberculosis and is one of the oldest voluntary health organization in
the United States. Since the beginning, the organization has been on
the front lines advocating for laws that protect the air we breathe and
our lungs. Accordingly, the Lung Association is the leading
organization working to save lives by improving lung health and
preventing lung disease through education, advocacy and research. As
the result of funding from this Committee, public health and research
programs will help to work to prevent lung disease, improve health and,
by extension save lives of millions of Americans.
improving public health and maintaining our investment in medical
research
The American Lung Association strongly supports an increase in
funding to $41.6 billion for the National Institute of Health (NIH). We
need sustained investments in NIH so that the promise of biomedical
research can be achieved. The Lung Association supports robust funding
increases for the individual institutes within NIH, recognizing the
need for research funding increases to ensure the pace of research is
maintained across NIH.
lung disease
Lung disease is the third highest killer in America, taking the
lives of almost 414,000 Americans each year. It has been estimated that
more than 35 million Americans suffer from a chronic lung disease and
lung disease costs the economy $129 billion each year.
the prevention and public health fund
The Lung Association strongly supports the Prevention and Public
Health Fund that was established in the Affordable Care Act. We ask the
Committee to oppose any attempts to divert or use the Fund for any
purposes other than what it was originally intended. The Prevention
Fund provides funding to the Centers for Disease Control and Prevention
(CDC) and its critical public health initiatives, such as the necessary
community. The Prevention Fund also supports CDC's media campaign
``Tips from Former Smokers.''
lung cancer
Lung cancer is the number one cancer killer of both women and men.
It is estimated that 228,150 new cases of lung cancer will be diagnosed
in 2019, and more than 158,000 Americans will die from the disease in
2016--85,920 men and 72,960 women. Survival rates for lung cancer tend
to be lower than those of other leading cancers, due to the lack of
early detection and diagnosis. African Americans are more likely to die
from lung cancer than persons of any other racial group. We ask the
Committee to increase funding for the National Institutes of Health to
$41.6 billion in fiscal year 2020 and to include increased funding for
lung cancer research as well as support for the Cancer Moonshoot and
the All of Us Program.
tobacco use
The use of tobacco is the number one preventable cause of death in
the United States. More than 34 million American adults smoke and
approximately half a million people die of tobacco-related disease each
year. Annual healthcare and lost productivity cost more than $300
billion in the U.S. each year. Each day, about 2,000 kids under 18
years of age try their first cigarette and more than 300 kids become
new, regular daily smokers. Additionally, Surgeon General Jerome Adams
has declared an epidemic of e-cigarette use among youth after high
school e-cigarette use increase by 78 percent in 1 year.
The CDC Office on Smoking and Health (OSH) must continue to receive
robust funding to help combat the tobacco-caused diseases that are
burdening the Nation. Public health interventions have been
scientifically proven to reduce tobacco use, the leading cause of
preventable death in the United States. The American Lung Association
urges that $310 million be appropriated to OSH for fiscal year 2020.
The American Lung Association respectfully requests the Committee's
support for the Office of Smoking and Health and the ``Tips from Former
Smokers'' Campaign. Over the past 5 years, hundreds of thousands of
Americans have successfully quit smoking because of ``Tips'' and
millions more have made quit attempts. The ``Tips'' campaign has been
an incredible return on investment that continues to generate positive
outcomes. An accepted threshold for cost-effective public health
interventions is approximately $50,000. The 2012 Tips campaign spent
$480 per smoker who quit and $393 per year of life saved.
asthma
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\25\ million Americans have asthma, including 6 million children.
It is a highly prevalent and costly disease. The Nation is making
progress to combat asthma but this advancement can only continue with
sustained investment. Asthma costs the U.S. an estimated $82 billion in
healthcare costs, lost productivity and mortality. Almost half of
children in the U.S. miss one or more days of school due to asthma
symptoms.
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The American Lung Association asks that you appropriate $34 million
to CDC's National Asthma Control Program (NACP) in fiscal year 2020.
The NACP tracks asthma prevalence, promotes asthma control and
prevention and builds capacity in State programs. This program has been
highly effective: the rate of asthma has increased, yet asthma
mortality and morbidity rates have decreased. Currently, only 24 States
receive funding--leaving a nationwide public health void that can lead
to unnecessary asthma-related attacks and healthcare costs. Increased
funding could help develop asthma programs in the remaining 26 States
and the District of Columbia.
Additionally, we recognize the importance of robust and sustained
increases for the National Heart, Lung and Blood Institute, the
National Institute of Allergy and Infectious Diseases and the National
Institute for Environmental Health Sciences. With increased support,
these agencies will be able to continue their investments in asthma
research in pursuit of treatments and cures.
chronic obstructive pulmonary disease
COPD (Chronic Obstructive Pulmonary Disease) is the fourth leading
cause of death in the U.S. More than 18 million U.S adults had evidence
of impaired lung function, indicating an under diagnosis of COPD. In
2016, 151,078 people in the U.S. died of COPD, representing one COPD
death every 3.5 minutes. The American Lung Association also asks the
Committee to continue its support of the National Heart, Lung and Blood
Institute working with CDC and other appropriate agencies to act on its
national action plan to address COPD, which should include public
awareness and surveillance activities. The American Lung Association
requests sustained and robust funding for the National Heart, Lung and
Blood Institute as well as funding for CDC to implement the National
COPD Action Plan.
The American Lung Association is requesting a new $3 million
program specifically for public health activities focused on COPD at
CDC through the fiscal year 2020 LHHS Appropriations Bill. In its
appropriations bill, the House Appropriations Committee on Labor,
Health and Human Services, Education and Related Agencies Subcommittee
included funding for a new chronic disease program with specific
mention of a COPD focus.
impact of climate change on lung health
CDC's Climate and Health Program is the only HHS program devoted to
identifying the risks and developing effective responses to the health
impacts of climate change, including worsening air pollution; diseases
that emerge in new areas; stronger and longer heat waves; and more
frequent and severe droughts, and provides guidance to States in
adaptation. Pilot projects in 16 States and two city health departments
use CDC's Building Resilience Against Climate Effects (BRACE) framework
to develop and implement health adaptation plans and address gaps in
critical public health functions and services. As climate-related
challenges intensify, CDC must have increased resources to support
States and cities in meeting the challenge. The Lung Association
supports $15 million for the Centers for Disease Control and
Prevention's Climate and Health Program.
tuberculosis
TB (Tuberculosis), an airborne infectious disease, is a leading
global infectious killer, causing 1.3 million deaths annually. In the
U.S., every State reports cases of TB annually, with California, Texas,
Hawaii and Alaska having the highest burdens. TB outbreaks continue to
occur across the country in schools, workplaces and prisons, costing
the U.S. over $460 million annually. Drug-resistant TB poses a
particular challenge to TB control due to the high costs of treatment
and intensive healthcare resources required. Treatment costs for
multidrug-resistant (MDR) TB range from $100,000 to $300,000 per case
and can be over $1 million for treatment of extensively drug resistant
(XDR) TB, which can outstrip State and local public health department
budgets. We request that Congress increase funding for tuberculosis
programs at CDC to $243 million for fiscal year 2020.
conclusion
Lung disease remains a growing problem in the United States and is
leading the Nation as the third highest killer. There have been
advancements in technology and medications; however, progress against
lung disease has been overshadowed by developments against other major
causes of death in the U.S. The level of support this committee
approves for lung disease programs should be reflective of the urgency
and magnitude of impact that lung disease has had on Americans.
The American Lung Association respectively requests that the
Committee supports funding requests and strongly encourages you to
oppose all policy riders on appropriations bills. Policy riders can
weaken key lung health protections, including those in the Clean Air
Act and the Tobacco Control Act. The Lung Association is appreciative
of your support and we thank you for your consideration of our
recommendations.
[This statement was submitted by Harold P. Wimmer, National
President and CEO, American Lung Association.]
______
Prepared Statement of the American National Red Cross
Chairman Roy Blunt, Ranking Member Patty Murray, and Members of the
Subcommittee, the American Red Cross appreciates the opportunity to
submit testimony in support of measles and rubella control activities
of the U.S. Centers for Disease Control and Prevention (CDC). The
American Red Cross recognizes the leadership that Congress has shown in
funding CDC for these essential and life-saving activities. We request
this subcommittee preserve CDC's global measles control activities for
fiscal year 2020 at $50 million, as part of $226 million for the
overall Global Immunization Programs line. From 2000 to 2017, an
estimated 21.1 million measles deaths were averted as a result of these
accelerated measles control activities, making measles mortality
reduction one of the most cost-effective public health interventions.
Between 2000-2017, measles vaccines were the single greatest
contribution to reducing preventable child deaths.
The Measles & Rubella Initiative
In 2001, CDC--along with the American Red Cross, the United Nations
Foundation, the World Health Organization (WHO), and UNICEF--founded
the Measles Initiative, a partnership committed to reducing measles
deaths globally. In 2012, the Initiative expanded to include rubella
control and adopted a new name, the Measles & Rubella Initiative. In
2013, all WHO regions established measles elimination goals by 2020.
The Measles & Rubella Initiative is committed to reaching these goals
by providing technical and financial support to governments and
communities worldwide.
The Measles & Rubella Initiative has achieved outstanding results
by supporting the vaccination of nearly three billion individuals in 88
countries since 2001 and saving the lives of more than 21.1 million
children. In part due to the Measles & Rubella Initiative, global
measles mortality has dropped 80 percent, from an estimated 545,000
deaths in 2000 to an approximately 110,000 in 2017 (the latest year for
which data is available), mostly children under the age of five. During
this same period, measles deaths in Africa fell by 86 percent. However,
in 2017 approximately 300 children died every day from a virus that can
be prevented by a safe, effective and inexpensive vaccine--generally,
less than $2 USD in lower income countries. Measles is among the most
contagious diseases ever known, and a top killer of children in low-
income countries where children have little or no access to medical
treatment and are often malnourished.
Measles spreads much more quickly than the flu or the Ebola virus.
A single person infected with measles can infect up to 18 other
unvaccinated people, compared with three for Ebola. The 2014-2015 Ebola
outbreak in Guinea, Sierra Leone and Liberia killed a total of 11,310
people. By comparison 2014, measles killed nearly 115,000 people
worldwide, more than 10 times the number of deaths from Ebola. Measles
can also cause severe complications such as pneumonia and encephalitis.
In addition, each year more than 100,000 children are born with
congenital rubella syndrome (CRS). CRS is the leading vaccine
preventable cause of severe birth defects worldwide. These birth
defects can include blindness, deafness, heart defects and mental
retardation. CRS is very costly to treat, yet very inexpensive to
prevent. Working closely with host governments, the Measles & Rubella
Initiative has been the main international supporter of mass measles
immunization campaigns since 2001. The Initiative mobilized more than
$1.2 billion and provided technical support in 88 developing countries
on vaccination campaigns, surveillance and improving routine
immunization services.
The majority of measles vaccination campaigns have been able to
reach more than 90 percent of their target populations. Countries
recognize the opportunity that measles vaccination campaigns provide in
accessing mothers and young children and integrating the campaigns with
other life-saving health interventions has become the norm. In addition
to measles vaccine, other health interventions are often distributed
during campaigns. These include: administering vitamin A, which is
crucial for preventing blindness in under nourished children; de-
worming medicine to reduce malnutrition; and distributing insecticide
treated bed nets to help prevent malaria and screening for
malnutrition. Doses of oral polio vaccines are also frequently
dispensed during measles campaigns in polio-endemic and high-risk
countries. The delivery of polio vaccines in conjunction with measles
vaccines in these campaigns strengthens the reach of elimination and
eradication efforts of both diseases. The provision of multiple child
health interventions during a single campaign is far less expensive
than delivering the interventions separately. This strategy increases
the potential positive impact on children's health from a single
campaign while serving to increase vaccination coverage rates.
In addition to the lifesaving benefits of measles vaccines,
immunization makes sound economic sense. A recent study by Johns
Hopkins University revealed the economic benefits of increased
investment in global vaccination programs. The study compared the costs
for vaccinating against 10 disease antigens in 94 low- and middle-
income countries during the period 2011-2020 versus the costs for
estimated treatments of unimmunized individuals during the same period.
Their findings show, on average, every $1 invested in these 10
immunizations produces $44 in savings in healthcare costs, lost wages,
and economic productivity. The return on investment for measles
immunization was particularly high, at $58 saved for every $1 invested.
Securing sufficient funding for measles and rubella-control
activities both globally and nationally is critical. Between 2018-2020
the Measles & Rubella Initiative is facing a funding shortfall of US
$71 million. The decrease in donor funds available at a global level to
support measles and rubella elimination activities makes increased
political commitment and country ownership of the activities critical
for achieving and sustaining the goal of reducing measles mortality by
95 percent. Implementation of timely measles and rubella campaigns is
increasingly dependent upon countries funding these activities locally,
which can be challenging under such downward financial pressure.
If such challenges are not addressed, the remarkable gains made
since 2000 will be lost and a major resurgence in measles death and
disability will occur. Measles is one of the most contagious diseases
know to humans and, due to our highly interconnected world, measles can
be spread globally including to countries that have already eliminated
the disease. The threat of importation of measles was one of the
reasons that the Global Health Security Agenda has selected measles as
an important indicator of whether a country's routine immunization
system is vaccinating all children. Additionally, the ability of a
country to rapidly detect and respond to measles cases is a marker of
the quality of a routine immunization system to identify and respond to
disease outbreaks more generally.
Controlling measles and rubella cases in other countries also
protects adults and children in the U.S. In the United States, measles
control measures have been strengthened, and endemic transmission of
measles cases has been eliminated since 2000 and rubella in 2002.
However, importations of measles cases into this country continue to
occur each year. Since 2000, the annual number of people reported to
have measles ranged from 37 in 2004 to 667 people across 27 States in
2014. Additionally, on July 2, 2015, the Washington State Department of
Health confirmed a measles-related death--the first death in 12 years
in the U.S. Last year, 372 people in 26 States were reported to have
measles. From January 1 to May 31, 2019, 981 individual measles cases
have been confirmed in 26 States, the largest number of cases since
1992.
Responding to a measles outbreak can cost State and local health
departments $100,000 per case to halt disease spread. One in four cases
of measles requires hospitalization, costing up to $15,000 per patient.
For people experiencing complications such as encephalitis, occurring
in one in 1,000 cases, the diagnosis and treatments can cost patients
more than $100,000. In the US, caring for a person with congenital
rubella syndrome can cost close to $1 million over the patient's
lifetime.
Eliminating measles and rubella is the right thing to do for
children to meet their full potential. The $58 to $1 return on
investment, coupled with the benefit of protecting American children
against importation of measles into the U.S., demonstrates that
investments in CDC's measles and rubella elimination program is an
excellent use of taxpayer dollars. We should be united in our
commitment to end these dangerous diseases because until we achieve
this goal, we are all at risk. By supporting the work of the CDC, we
can save lives and prevent the needless suffering measles and rubella
cause.
The Role of CDC in Global Measles Mortality Reduction
Since fiscal year 2001, Congress has provided funding to protect
children and their families from the threat of measles and rubella in
developing countries. This support has assisted 88 countries around the
world and has contributed to saving the lives of 21.1 million children.
In 2017, 205 million children were vaccinated against these diseases.
For this support, we extend our deep appreciation to Congress. This
support permitted the provision of technical support to Ministries of
Health that specifically included: (1) planning, monitoring, and
evaluating large-scale measles vaccination campaigns; (2) conducting
epidemiological investigations and laboratory surveillance of measles
outbreaks; (3) CDC's Global Measles Reference Laboratory to serve as
the leading worldwide reference laboratory for measles and rubella. The
reference laboratory provides specimen confirmation and testing as well
as training for country and regional labs; and (4) conducting
operations research to guide cost-effective and high-quality measles
control programs.
In addition, CDC epidemiologists and public health specialists have
worked closely with WHO, UNICEF, the United Nations Foundation, and the
American Red Cross to strengthen measles and rubella control programs
at global and regional levels and will continue to work with these and
other partners in implementing and strengthening rubella control
programs. There is no doubt that CDC's financial and technical
support--made possible by the funds appropriated by Congress--were
essential in helping achieve the sharp reduction in measles deaths in
just 15 years.
The American Red Cross would like to acknowledge the leadership and
work provided by CDC and recognize that CDC brings much more to the
table than just financial resources. The Measles & Rubella Initiative
is fortunate to have a partner that provides critical personnel and
technical support for vaccination campaigns and in response to disease
outbreaks. CDC personnel have routinely demonstrated their ability to
effectively coordinate and plan with international organizations and
provide solutions to complex problems that help critical work get done
faster and more efficiently.
Since fiscal year 2010, the CDC's measles and rubella elimination
program has been funded at approximately $50 million. In fiscal year
2020, the American Red Cross respectfully requests the continuation of
level funding of $50 million. This investment will allow CDC to
maintain measles and rubella control and elimination activities,
safeguard the progress made over the last decade and protect Americans
by preventing measles cases and deaths in the United States. The
overall CDC Global Immunization Program, through which the Measles and
Rubella Initiative is funded, has been highly successful and we support
full funding for the overall account. All of the programs funded
through the Global Immunization Program line help to build stronger
health systems. We respectfully request $50 million for CDC measles
elimination activities, as part of level funding of $226 million for
the entire Global Immunization account in fiscal year 2020.
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.]
______
Prepared Statement of the American Physiological Society
The American Physiological Society (APS) thanks the subcommittee
for its ongoing support of the National Institutes of Health (NIH). The
$2 billion funding boost you provided in fiscal year 2019, following on
those provided in fiscal year 2016-2018 have helped NIH address
critical health problems and emerging challenges through cutting-edge
research. These much-needed increases have put the NIH on a path toward
sustainable budget growth. The APS urges you to sustain this vital
effort by providing the NIH with at least $41.6 billion in fiscal year
2020.
Breakthroughs in basic and translational research are the
foundation for new drugs and therapies that help patients, fuel our
economy, and provide jobs. Federal investment in research is essential
because the NIH is the primary funding source for this discovery
research through its competitive grants program. The private sector
commercializes new treatments, but it depends upon federally-funded
discovery research to point way to where the next breakthrough is
likely to be found. This system of public-private partnership has been
critical to U.S. leadership in the biomedical sciences. According to a
recent article in the Proceedings of the National Academy of Sciences,
all 210 new molecular entities approved by the Food and Drug
Administration between 2010 and 2016 were associated with NIH-supported
research. Importantly, 84 of those new drugs involved a newly-
discovered mechanism of action or biological target in the body.\1\
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Federal research dollars also have a significant impact at the
local level: Approximately 83 percent of NIH's budget goes to some
30,000 researchers working in colleges, universities, and medical
centers across the country. They in turn use their NIH grant funds to
train students, pay research and administrative staff, purchase
supplies and equipment, and cover other costs associated with their
research. According to an updated 2019 report, NIH research funding in
fiscal year 2018 supported more than 430,000 jobs and generated nearly
$74 billion in total economic activity nationwide.\2\
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2019/03/NIHs-Role-in-Sustaining-the-US-Economy-2019-Update-FINAL.pdf.
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The increases Congress has provided NIH over the last 4 years are
helping to correct the devastating effects of sequestration and budgets
that declined in real terms due to the effects of inflation. To keep
the agency on a strong path forward, we urge you to provide meaningful
and predictable annual budget increases that keep up with the rate of
inflation and take full advantage of the incredible opportunities for
discovery before us.
As specified in the 21st Century Cures Act, NIH continues to pursue
a number of important initiatives including the Cancer Moonshot, the
All of Us program (formerly the precision medicine initiative), and the
Brain Research through Advancing Innovative Neurotechnologies (BRAIN)
Initiative. These programs focus resources on specific areas of
scientific opportunity are ripe for innovation, but this is only
possible because they build upon decades of discovery research. To
advance our knowledge and lay the groundwork for similar opportunities
for innovation in the future, NIH must continue to invest in creative
investigator-initiated research.
Over the past several decades, NIH has used a merit-based peer
review system to identify and fund the best research proposals. To
date, NIH has supported the work of 156 Nobel Laureates, including the
2018 winners of the Chemistry and Physiology or Medicine prizes. Thanks
to NIH research, Americans can expect to live longer and healthier
lives. NIH also plays an important role in training the next generation
of scientists by supporting trainees with individual fellowships and
institutional grants as they complete their graduate degrees and seek
the post-doctoral training necessary to pursue successful independent
research careers.
Today significant challenges loom before us: The opioid epidemic
has become a national public health crisis. An aging population will
bring an increase in diseases that contribute to death and disability
such as heart disease, diabetes, kidney disease, arthritis, and cancer.
New and emerging infectious diseases will require us to be nimble in
investing our resources. If we are to continue to advance new and
innovative ways to address these and other challenges on the horizon--
including developing the workforce necessary to do so--the NIH will
need stable and predictable funding increases in future years.
The APS joins the Federation of American Societies for Experimental
Biology (FASEB) in urging that NIH be provided with no less than $41.6
billion in fiscal year 2020. This represents a $2.5 billion increase
over fiscal year 2019.
The APS is a nonprofit devoted to fostering education, scientific
research and dissemination of information in the physiological
sciences. The Society was founded in 1887 with 28 members and now has
over 10,000 members, most of whom hold doctoral degrees in physiology,
medicine and/or other health professions.
______
Prepared Statement of the American Psychological Association
APA is the largest scientific and professional organization
representing psychology in the U.S., numbering over 118,400
researchers, educators, clinicians, consultants and students. Many
programs in the Labor-HHS-Education bill strengthen the public health
workforce and support research, education, and needed services for the
diverse populations served by psychologists.
Science.--To increase knowledge to advance health and education,
APA supports strong investments in the Institute of Education Sciences
(IES), National Institutes of Health (NIH), and Agency for Healthcare
Research and Quality (AHRQ). For IES, which helps develop the research
base for and evaluates the effectiveness of U.S. education programs, we
request $670 million, a restoration of the nearly 10 percent decrease
in purchasing power in real dollars that IES has experienced since
fiscal year 2011. The additional funding would help support IES's
Research, Development and Dissemination efforts. APA thanks Congress
for the fiscal year 2018 and 2019 increases to the NIH accounts which
have boosted the average grant success rate to about 1 in 5. But not
all programs in NIH have benefited from those increases. APA asks the
Committee to encourage NIH to raise from $27 million to $28 million the
funding for the Office of Behavioral and Social Sciences Research
(OBSSR), which coordinates and helps institutes share resources to
support this critical research.
We also ask the Committee to encourage The Eunice Kennedy Shriver
National Institute of Child Health and Human Development (NICHD) to
maintain its founding focus on human development and take a more
integrated approach to understanding cognitive, behavioral, emotional,
social, and environmental processes, in addition to biological and
genetic processes, that affect human development. APA recommends that
NIH expand its Loan Repayment Program beyond the five currently
eligible extramural programmatic areas to include mission-oriented pain
and addiction research. The opioid crisis requires that NIH emphasize
the training of scientists in these inextricably linked research
domains as well as spotlight non-human animal pain and addiction
research.
APA opposes the Administration's proposal to move AHRQ into NIH and
supports increased funding to $460 million to maintain its critical
mission: advancing research to help determine how to deliver the
highest quality healthcare at the greatest value and make the
healthcare system safer and more efficient.
Workforce and Access to Healthcare.--To strengthen the public
health workforce and improve access to healthcare, APA supports
enhanced budgets for targeted programs in the Health Resources and
Services Administration (HRSA) and the Substance Abuse and Mental
Health Services Administration (SAMHSA). The Nation's mental and
behavioral health workforce must be expanded to respond adequately to
the opioid epidemic, and to the healthcare needs of our increasingly
diverse and aging population. Psychologists, as researchers and
practitioners, are integral to a healthcare system in which more than
half of U.S. mortality is linked to behavior, and where mental and
behavioral disorders are a significant health concern.
APA appreciates the current attention to maternal mental health and
maternal health disparities, and requests that the committee include
report language similar to the House LHHS report requiring HHS to
conduct an interagency report on maternal mental health, with
additional language regarding access to care for underserved
populations including people with disabilities and racial and ethnic
minorities.
HRSA projects a shortage of 14,300 psychologists by 2030 to address
the growing needs for behavioral interventions. APA recommends robust
investments in the Bureau of Health Workforce, which supports critical
interprofessional behavioral health workforce training programs.
Specifically, APA strongly encourages the Committee to maintain level
funding of $18 million for the Graduate Psychology Education Program,
to increase the number of health service psychologists trained to
provide integrated services to high-need, underserved populations in
rural and urban communities. In addition, APA recommends $93.9 million
for the Behavioral Health Workforce Education and Training and Opioid
Workforce Enhancement Programs. To further expand access to evidence-
based substance use disorder treatment in underserved communities, APA
recommends initial funding of $25 million for the Substance Use
Disorder Loan Repayment Program authorized in the SUPPORT Act of 2018.
As the number of Americans over age 65 will likely double between
2000 and 2030, APA further recommends $51 million for the Geriatric
Workforce Enhancement Program and Geriatric Academic Career Awards to
provide training for health professionals, faculty, family caregivers,
and consumers in the unique needs of older adults.
Also, in HRSA, APA supports level funding for the Maternal and
Child Health Block Grant and strongly recommends continued funding of
$5 million to support depression screening and treatment for pregnant
women. APA supports $400 million for the Title X Family Planning
Program, the sole source of Federal funding for family planning for
underserved populations, providing access to reproductive health
services for those who may otherwise not have access.
At SAMHSA, APA urges an increase to $14.7 million for the Minority
Fellowship Program. Ethnic minorities represent 30 percent of the U.S.
population, but only 23 percent of recent doctorates in psychology. APA
recommends $63.9 million level funding for the National Child Traumatic
Stress Network, to ensure access to high quality and evidence-based
behavioral health services for children in need. APA requests an
additional $35 million for the Community Mental Health Services Block
Grant, to fund a 5 percent set-aside for States to fund crisis care
services. These funds would enable States to implement the Crisis Now
strategies recommended by the National Action Alliance for Suicide
Prevention, shown to be highly effective in improving care and reducing
costs. The array of crisis care services for which funding would be
available to States would include centrally deployed 24/7 mobile crisis
units, short-term residential crisis stabilization beds, evidence-based
protocols for delivering services to individuals with suicide risk,
and/or regional or statewide crisis call centers coordinating in real
time. Resources through the set-aside would be in addition to $80
million in fiscal year 20 funding for the National Suicide Prevention
Lifeline, a fundamental part of the crisis services continuum.
APA also supports maintaining current funding for the Garrett Lee
Smith Memorial Act (GLSMA) programs, which increase young adults'
access to prevention, education, and outreach services to reduce
suicide risk in States, Tribes, and institutions of higher education:
$35.4 million for the State and Tribal Youth Suicide Prevention
Program, $7 million for the Campus Mental and Behavioral Health
Program, and $6 million for the Suicide Prevention Resource Center. We
also recommend at least $444 million for the Substance Abuse Prevention
and Treatment (SAPT) block grant, to restore purchasing power to 2009
levels. SAPT funding has not kept pace with inflation, despite the
emergence of the opioid epidemic. It is a key source of funding
especially for prevention activities.
Other Programs Enhancing Access to Care or Workforce Development.--
APA also supports SAMHSA's Minority AIDS Initiative, providing for
evidence-based, culturally appropriate, HIV/AIDS-related mental health
and substance use disorder treatment services among vulnerable
populations. We recommend $160m to expand efforts to prevent domestic
HIV transmission and to increase treatment options for those living
with co-morbid HIV, mental health and substance use conditions.
Public Health Services and Infrastructure.--APA recommends
increases in funding for several CDC programs: a topline appropriation
of $7.8 billion; $700 million for the CDC Injury Center to expand the
evidence base for injury and violence prevention programs; $23.5
million to maintain the expansion of the National Violent Death
Reporting System; $50 million for Gun Violence Prevention research on
firearm morbidity and mortality prevention; and $50 million for the
Division of Adolescent and School Health safe and supportive school
environment programs.
To fill key gaps in education services, given the heavy burden of
student loan debt, APA supports added investments in grant programs
supporting graduate study, including at least $23 million for the
Graduate Assistance in Areas of National Need (GAANN) Program, where
psychology has been recognized as a national need area. We urge
continued appropriations for the Temporary Expanded Public Service Loan
Forgiveness (TE-PSLF) program to raise awareness and educate student
borrowers about their eligibility as they begin careers in public and
non-profit sectors. Until the Department addresses concerns with the
implementation and management of the PSLF, the TE-PSLF program provides
needed resources to support students who have received incorrect
information that has consequently jeopardized their eligibility for the
program. To ensure that our students receive a well-rounded education,
and access to mental health counseling and programs that foster safe
and healthy schools, we request $1.6 billion for the Student Support
and Academic Enrichment (SSAE) block grant under Title IV-A.
To improve the social safety net, APA supports $1.7 billion for the
Social Services Block Grant, to provide vital social services (e.g.
protective services, special services to people with disabilities). To
prevent child abuse and neglect, reduce the need for foster care
placement, and provide the most vulnerable families the services and
support they need, we support an increase in funding for the Child
Abuse Prevention and Treatment Act (CAPTA): $270 million for Title I
and $270 million for Title II, as well as $60 million to support safe
care plans for infants with prenatal substance exposure and families
impacted by substance use disorders. APA also requests $10.3 billion
for the Child Care Development Fund, to expand access to safe,
affordable childcare for working families.
______
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 for the Centers for Disease Control and Prevention
and for the Health Resources and Services Administration in fiscal year
2020. We are extremely pleased with the nearly $8.3 billion provided to
CDC in the House Labor, Health and Human Services, and Education, and
Related Agencies Appropriations bill. This total includes a transfer of
$225 million from the HHS Nonrecurring Expenses Fund for one-time
projects to improve CDC campus infrastructure. We urge the Senate to
match the House funding level for CDC as you develop the Senate's
fiscal year 2020 Labor, Health and Human Services, and Education, and
Related Agencies Appropriations bill. We also urge you to support $8.56
billion for the Health Resources and Services Administration in the
bill.
Centers for Disease Control and Prevention: CDC provides the
foundation for our State and local public health departments,
supporting a trained workforce, laboratory capacity and public health
education communications systems. It is notable that more than 70
percent of CDC's budget supports public health and prevention
activities by State and local health organizations and agencies,
national public health partners and academic institutions. We believe
Congress should support CDC as an agency and urge the Senate to match
the nearly $8.3 billion provided for CDC in the House bill. We are
grateful for the important increases provided for CDC programs in
fiscal year 2019 and urge Congress to build upon these investments to
strengthen all of CDC's programs most of which remain woefully
underfunded. We also urge your continued support for the Prevention and
Public Health Fund which currently makes up approximately 10 percent of
CDC's budget.
CDC serves as the command center for the Nation's public health
defense system against emerging and reemerging infectious diseases.
From aiding in the surveillance, detection and prevention of the Zika
virus to playing a lead role in the control of Ebola in West Africa and
detecting and responding to cases in the U.S., to monitoring and
investigating disease outbreaks in the U.S., to pandemic flu
preparedness, to educating the public about the value and importance of
vaccines, CDC is the Nation's--and the world's--expert resource and
response center, coordinating communications and action and serving as
the laboratory reference center for identifying, testing and
characterizing potential agents of biological, chemical and
radiological terrorism, emerging infectious diseases and other public
health emergencies. 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. Congress must support efforts to stop current
vaccine-preventable disease outbreaks and prevent more from occurring.
We urge you to provide adequate funding for CDC's public health
emergency preparedness and immunization programs.
In 2017, nearly 40,000 Americans lost their lives due to gun
violence. Unfortunately, Congress has failed to provide any funding for
research into this deadly epidemic, which has stymied progress on gun
violence prevention research for the past 20 years. Congress can
correct this by providing CDC with $50 million in fiscal year 2020 for
gun violence prevention research. This funding is needed to 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. We are pleased that the House bill provides $25
million to both CDC and the National Institutes of Health, for a total
of $50 million, to conduct this research.
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 match the House level of $243 million for NCEH in fiscal
year 2020, including a $5 million increase for CDC's Climate and Health
program. Climate change is happening now and is threating our health in
many ways including through the increased spread of vector-borne
diseases, degraded air quality from ozone pollution and wildfire smoke,
hotter temperatures and more extreme weather events. Increased funding
will allow CDC to fund an additional 14 health departments to help them
prepare for and respond to the health impacts of climate change in
their communities. CDC will also be able to begin to evaluate the work
of existing grantees to identify and share best practices with
communities nationwide.
Programs under the National Center for Chronic Disease Prevention
and Health Promotion address heart disease, stroke, cancer, diabetes
and tobacco use that are the leading causes of death and disability in
the U.S. and are also among the most costly to our health system. CDC
provides funding for State programs to prevent disease, conduct
surveillance to collect data on disease prevalence, monitor
intervention efforts and translate scientific findings into public
health practice in our communities. We once again strongly oppose the
administration's proposal to block grant and cut funding for many of
these programs.
Health Resources and Services Administration: HRSA is the primary
Federal agency dedicated to improving health outcomes and achieving
health equity. HRSA's 90-plus programs and more than 3,000 grantees
support tens of millions of geographically isolated, economically or
medically vulnerable people, in every U.S. State and territory, to
achieve improved health outcomes by increasing access to quality
healthcare and services; fostering a healthcare workforce able to
address current and emerging needs; enhance population health and
address health disparities through community partnerships; and promote
transparency and accountability within the healthcare system.
We are grateful for the increases provided for HRSA programs in
fiscal year 2019, however HRSA's discretionary budget authority remains
nearly 20 percent below the fiscal year 2010 level (adjusted for
inflation). We recommend Congress build upon the important increases
they provided for HRSA programs in fiscal year 2019 and provide $8.56
billion for HRSA's total discretionary budget authority in fiscal year
2020.
HRSA programs and grantees are providing innovative and successful
solutions to some of the Nation's greatest healthcare challenges,
including the rising maternal mortality rate, the severe shortage of
health professionals, the high cost of healthcare and behavioral health
issues related to substance use disorder, including opioid misuse.
Additional funding will allow HRSA to build upon these successes and
pave the way for new achievements by supporting critical HRSA programs,
including:
Primary Health Care that supports over 11,000 community health
center sites in medically underserved communities across the U.S.,
providing access to high-quality preventive and primary care to more
than 28 million people including over 8.4 million children and 350,000
veterans.
Health Workforce supports the health workforce across the entire
training continuum and offers scholarship and loan repayment programs
to ensure a well-prepared, well-distributed and diverse workforce that
is ready to meet the current and evolving healthcare needs of the
Nation.
Maternal and Child Health supports initiatives that promote optimal
health, reduce infant mortality, minimize disparities, prevent chronic
conditions and improve access to quality healthcare for vulnerable
women, infants and children; and serves more than 56 million people
through the MCH block grant.
HIV/AIDS delivers a comprehensive and robust system of care to more
than 550,000 individuals impacted by HIV/AIDS, improving health
outcomes for people with HIV and reducing the chance of others becoming
infected; and provides training for health professionals treating
people with HIV/AIDS. HRSA's Ryan White HIV/AIDS Program effectively
engages clients in comprehensive care and treatment, including
increasing access to HIV medication, which has resulted in 86 percent
of clients achieving viral suppression, compared to just 59 percent of
all people living with HIV nationwide.
Family Planning Title X services ensure access to comprehensive
family planning and related preventive health services to more than 4
million people, thereby reducing unintended pregnancy rates, limiting
transmission of sexually transmitted infections and increasing early
detection of breast and cervical cancer.
Rural Health supports community and State-based solutions to
improve efficiencies in delivering rural health services and expand
access, including supporting activities that aim to increase access to
opioid treatment in rural areas, leverage the use of health information
technology and telehealth and advise on rural health policy issues.
In closing, we emphasize that the public health system requires
stronger financial investments at every stage. This funding makes up
less than 1 percent of Federal spending. Cuts to public health and
prevention programs will not balance our budget and will only lead to
increased costs to our healthcare system. Prevention opportunities,
screening programs, lifestyle and behavior changes and other
population-based interventions are effective, and a stronger investment
in these programs will enable us to meet the mounting health challenges
we currently face and to become a healthier Nation.
Thank you for considering our views on fiscal year 2020 funding for
these critical Federal public health agencies and programs.
[This statement was submitted by Georges C. Benjamin, MD, Executive
Director, American Public Health Association.]
______
Prepared Statement of the American Society for Engineering Education
summary
This written testimony is submitted on behalf of the American
Society for Engineering Education (ASEE) to the Senate Subcommittee on
Labor, Health and Human Services, Education, and Related Agencies for
the official record. ASEE appreciates the Committee's support for the
Department of Education (ED) in fiscal year 2019 and asks you to
robustly fund student aid, teacher preparation, and STEM programs in
fiscal year 2020. Additionally, ASEE requests Federal funding to
support initiatives aimed at increasing the diversity of the STEM
pipeline and support for Minority Serving Institutions (MSI). The
strong support of the National Institutes of Health (NIH) in fiscal
year 2019 was greatly appreciated and ASEE requests continued support
of NIH.
written testimony
The American Society for Engineering Education (ASEE) advances
innovation, excellence, and access at all levels of education for the
engineering profession and is the only society representing the
country's schools and colleges of engineering and engineering
technology. Membership includes over 12,000 individuals hailing from
all disciplines of engineering and engineering technology including
educators, researchers, and students as well as industry and government
representatives. As the pre-eminent authority on the education of
engineering professionals, ASEE seeks to advance the development of
innovative approaches and solutions to engineering education and
advocates for equal access to engineering educational opportunities for
all.
Student Aid
Student aid programs like Pell Grants, Federal Work-Study (FWS),
TRIO, and others make higher education accessible and affordable for
millions of students. ASEE joins the higher education community in
requesting funding to support a maximum Pell Award of $6,345. 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 impacts that higher education provides.
ASEE requests funding for FWS at $1.434 billion and $1.028 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. 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 $48 million for GAANN. Engineering education provides a proven
pathway to the middle class, especially for students from low-income
backgrounds.
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.
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 funding increases
many STEM programs received in fiscal year 2019. ASEE supports funding
for Title IV of 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.
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 fiscal year 2019. 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 $41.6 billion in fiscal year 2020 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 Stephanie Farrell, Ph.D.,
President, and Norman Fortenberry, Sc.D., Executive Director, American
Society for Engineering
Education.]
______
Prepared Statement of the American Society for Microbiology
On behalf of its 32,000 members, the American Society for
Microbiology (ASM) thanks Chairman Blunt, Ranking Member Murray, and
members of the Senate Appropriations Subcommittee on Labor, Health and
Human Services, Education and Related Agencies for holding a hearing on
the response to the Ebola outbreak in the Democratic Republic of the
Congo (DRC) and other emerging threats.
We also thank the Chairman, Ranking Member and the Subcommittee
members for their unwavering support for medical research, as
demonstrated by the $9 billion (30 percent) increase in funding for the
National Institutes of Health (NIH) over the past four fiscal years. We
urge the Subcommittee to make a strong investment in fiscal year 2020
in the Centers for Disease Control and Prevention (CDC), given its work
in tandem with a well-funded NIH, and its role as a critical partner in
maintaining global health security.
As an organization with an extensive global health program and
scientists and public health workers on the front lines in countries
like the DRC, ASM understands firsthand the importance of securing our
borders against natural and intentional bio threats. Our human world is
more interconnected than ever, and so is our microbial world. What
happens in the environments in remote areas of the world can often
spell the telltale signs of the next major outbreak, wherever we happen
to live, because microbes are unimpeded by the construct of human
borders.
At a time when we are still addressing threats like Ebola in Africa
and seeing antimicrobial resistance rise, the drastic cuts proposed to
these agencies in the President's fiscal year 2020 budget request to
Congress are unthinkable. If enacted, these cuts would cripple our
Nation's ability to respond to threats at home, regardless of where in
the world they may originate. For this reason and because of their
critical importance to our national security, our public health here in
the United States, and our global leadership in advancing science, ASM
urges Congress to reject the President's short-sighted cuts and
continue to support robust funding for the NIH, the CDC, and programs
under the Assistant Secretary for Preparedness and Response.
We also urge Congress to recommit to a Global Health Security
Agenda (GHSA). GHSA is a critical program for international engagement
and capacity building in public health. Funding for this effort is
slated to end this year. Our GHSA investment has helped strengthen
laboratory diagnostic capacity and reporting for surveillance in many
countries, with proven results, and should continue.
Lastly, we urge the Senate to move quickly to pass legislation that
reauthorizes the Pandemic and All-Hazards Preparedness Act (PAHPA), and
that the Subcommittee support funding consistent with the
reauthorization. The recent outbreaks of Ebola abroad and even
outbreaks here in the United States of vaccine-preventable diseases
like the measles demonstrate why this legislation is so critical. Our
Nation's security calls for the need to prevent and mitigate a major
disease outbreak, and the resources to build and sustain the
infrastructure necessary for Federal and State governments to respond
to potential and declared public health emergencies in a timely and
coordinated manner.
Ebola will not be the last virus to evolve into a major health and
security threat. The only way to stay ahead of the rapid evolution of
microorganisms and the inevitable emergence of new diseases is to
support infectious disease research and public health agencies that can
prevent and respond rapidly to outbreaks. This requires robust,
sustained and predictable funding, training of personnel, and safe and
secure facilities.
ASM stands ready to assist Members of the Subcommittee and the
Congress in supporting and strengthening these programs under the NIH,
the CDC, and USAID to ensure global health security for the United
States and our allies abroad.
ASM is the largest single life science society, composed of more
than 32,000 scientists and health professionals. Our mission is to
promote and advance the microbial sciences, including programs and
initiatives funded by the Federal Government departments and agencies,
by virtue of the pervasive role of microorganisms in health and
society.
______
Prepared Statement of the American Society for Nutrition
Dear Chairman Blunt and Ranking Member Murray:
Thank you for the opportunity to provide testimony regarding fiscal
year 2020 appropriations. The American Society for Nutrition (ASN)
respectfully requests at least $41.6 billion dollars for the National
Institutes of Health (NIH) and $175 million dollars for the Centers for
Disease Control and Prevention/National Center for Health Statistics
(CDC/NCHS) in fiscal year 2020. ASN is dedicated to bringing together
the world's top researchers to advance our knowledge and application of
nutrition, and has more than 7,000 members working throughout academia,
clinical practice, government, and industry.
national institutes of health
The NIH is the Nation's premier sponsor of biomedical research and
is the agency responsible for conducting and supporting 86 percent of
federally-funded basic and clinical nutrition research. Although
nutrition and obesity research make up less than 8 percent of the NIH
budget, some of the most promising nutrition-related research
discoveries have been made possible by NIH support. NIH nutrition-
related discoveries have impacted the way clinicians prevent and treat
heart disease, cancer, diabetes and other chronic diseases. For
example, from 2001 to 2011, the U.S. death rate from heart disease has
fallen by about 39 percent and from stroke by about 35 percent.\1\
However, the burden and risk factors remain high. With additional
support for NIH, additional breakthroughs and discoveries to improve
the health of all Americans will be made possible.
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\1\ https://www.heart.org/idc/groups/ahamah-public/@wcm/@sop/@smd/
documents/downloadable/ucm_470704.pdf.
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Investment in biomedical research generates new knowledge, improved
health, and leads to innovation and long-term economic growth. From
fiscal year 2003 to 2015, the NIH lost 22 percent of its capacity to
fund research due to budget cuts, sequestration, and inflationary
losses. Such economic stagnation is disruptive to training, careers,
long-range projects and ultimately to progress. Since fiscal year 2016,
Congress has begun to restore the NIH budget but there is much work to
be done; in real dollars, the NIH budget is still 16 percent below the
fiscal year 2003 level. ASN recommends at least $41.6 billion dollars
for NIH in fiscal year 2020 to support NIH nutrition-related research
that will lead to important disease prevention and cures. A budget of
$41.6 billion will allow NIH to support at least 400 additional early
career and early established investigators 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
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 2020 funding
level of $175 million dollars for NCHS to help ensure uninterrupted
collection of vital health and nutrition statistics and help cover the
costs needed for technology and information security maintenance and
upgrades that are necessary to replace aging survey infrastructure. The
U.S. is a leader in this area and a decade of flat-funding has taken a
significant toll on NCHS's ability to keep pace.
The NCHS provides critical data on all aspects of our healthcare
system, and it is responsible for monitoring the Nation's health and
nutrition status through surveys such as the National Health and
Nutrition Examination Survey (NHANES), that serve as a gold standard
for data collection around the world. Nutrition and health data,
largely collected through NHANES, are essential for tracking the
nutrition, health and well-being of the American population, and are
especially important for observing nutritional and health trends in our
Nation's children. This is an invaluable source of data that has been
and can continue to be used to address major health issues as they
arise.
Nutrition monitoring conducted by the Department of Health and
Human Services in partnership with the U.S. Department of Agriculture/
Agricultural Research Service is a unique and critically important
surveillance function in which dietary intake, nutritional status, and
health status are evaluated in a rigorous and standardized manner.
Nutrition monitoring is an inherently governmental function and
findings are essential for multiple government agencies, as well as the
public and private sector. Nutrition monitoring is essential to track
what Americans are eating, inform nutrition and dietary guidance
policy, evaluate the effectiveness and efficiency of nutrition
assistance programs, and study nutrition-related disease outcomes.
Funds are needed to ensure the continuation of this critical
surveillance of the Nation's nutritional status and the many benefits
it provides.
Through learning both what Americans eat and how their diets
directly affect their health, the NCHS is able to monitor the
prevalence of obesity and other chronic diseases in the U.S. and track
the performance of preventive interventions, as well as assess
'nutrients of concern' such as calcium, iron, folate, iodine, vitamin
D, and other micronutrients which are consumed in inadequate amounts by
many subsets of our population. Data such as these are critical to
guide policy development in health and nutrition, including food
safety, food labeling, food assistance, military rations and dietary
guidance. For example, NHANES data are used to determine funding levels
for programs such as the Supplemental Nutrition Assistance Program
(SNAP) and the Women, Infants, and Children (WIC) clinics, which
provide nourishment to low-income women and children.
Thank you for the opportunity to submit testimony regarding fiscal
year 2020 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] or 240-
428-3650, if ASN may provide further assistance.
Sincerely.
[This statement was submitted by Catherine J. Field, Ph.D., RD,
President,
American Society for Nutrition.]
______
Prepared Statement of the American Society of Clinical Oncology
The American Society of Clinical Oncology (ASCO), the world's
leading professional organization representing over 45,000 physicians
and other professionals who treat people with cancer, thanks this
subcommittee for its long-standing commitment to support federally
funded research at the NIH and NCI. ASCO applauds your leadership in
securing a $2 billion increase for the NIH in fiscal year 2019. This
strong commitment to scientific discovery will help the research
community regain momentum and sustain our Nation's position as the
world leader in biomedical research. We are in an exciting and
promising era of medical research; new discoveries are leading to major
improvements in the way we care for patients with cancer. Continued
progress in preventing and treating cancer depends on consistent and
reliable funding for research that provides the insight needed for
better treatments and quality of life for all Americans. ASCO
appreciates this opportunity to provide the following recommendations
for fiscal year 2020 funding which build on our Nation's investment in
biomedical research:
--National Institutes of Health (NIH): $41.6 billion
--National Cancer Institute (NCI): $6.522 billion
Clinical cancer research in the United States is made possible
through funding from both the public and private sectors. Federal
funding is indispensable to the high-risk, pioneering research that has
contributed to the rapidly expanding population of cancer survivors. In
many cases, these are studies commercial entities typically do not
pursue, including research on cancer prevention, screening, treatment
comparisons, and therapies that combine multiple therapies.
The NIH: A Good Investment
In fiscal year 2018, the NIH provided over $28 billion in
extramural research to scientists in all 50 States and the District of
Columbia. NIH research funding also supported more than 433,000 jobs
and nearly $74 billion in economic activity last year.\1\ Federal
funding supported nearly one third of the studies highlighted in ASCO's
2019 Clinical Cancer Advances report, the Society's 14th annual report
on progress against cancer. Some of the most notable federally funded
advances highlighted in the 2019 report are:
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\1\ ASCO Clinical Cancer Advances 2019 Report; https://
www.asco.org/research-progress/reports-studies/clinical-cancer-
advances-2019.
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--New combination of targeted therapies identified for rare form of
thyroid cancer.
--First treatment approved to improve progression-free survival for
rare Sarcoma.
--First promising therapy identified for rare cancer of the joints
that occurs in young adults.
--Combination immunotherapy found to reduce brain metastases in
people with melanoma.
--CAR-T therapy trials showing longer term benefits in patients with
lymphoma.
--Common cancers detected early in investigational blood tests.
--Major trial identifies women who can safely skip adjuvant
chemotherapy for breast cancer.
--New combination treatment halves hearing loss risk in children with
hepatoblastoma.
--Link established between specific oral microbiome and the risk of
colon, squamous cell, and esophageal cancers.
Sustained and steady funding of the NIH and NCI is critical to
maintaining the pace of scientific discovery and continued progress
against cancer, such as the advances outlined above.
We appreciate that over the last few years Congress has prioritized
Federal funding for biomedical research, increasing the NIH budget by
$2 billion in fiscal year 2019, and providing an increase of $9 billion
over the last four fiscal years. Despite Congress' efforts, however,
the budget of both the NIH and NCI, when adjusted for biomedical
inflation, remain below 2003 levels. In fact, if the NIH's budget had
kept up with biomedical inflation since its doubling, it would be 8.4
percent, or $3.6 billion higher than it is now. Funding for our
Nation's biomedical research infrastructure needs sustained increases
to meet the possibility of today's science. Failure to continue the
historic investment in research places health outcomes, scientific
leadership, and economic growth at risk.
Capturing Opportunity: The Potential of Cancer Research
ASCO thanks appropriators for the continued inclusion of funding
for the Beau Biden Cancer Moonshot Initiative in the fiscal year 2019.
The NCI continues its work to achieve 10 years of cancer research
progress in five. Specifically, the Cancer Moonshot Initiative is
currently working towards modernizing clinical trials, establishing a
direct patient engagement network, development of a national cancer
data ecosystem, continued advances in precision oncology, and
developing effective immunotherapies for a broader array of cancers,
including pediatrics. Adequate funding is needed to make progress in
each of these areas over the coming years. However, funding for this
Initiative should supplement rather than supplant predictable increases
in the underlying NCI budget. In fact, funding for the Initiative peaks
in fiscal year 2019, and NCI will face a major drop in funding for the
Initiative in fiscal year 2020, from $400 million in fiscal year 2019
to $195 million in fiscal year 2020, and will remain lower through
fiscal year 2023 when funding for the Initiative ends, making it
critical for NCI to receive greater baseline funding from Congress.
The NCI is the largest funder of cancer research in the world, and
the majority of its funding goes directly towards supporting research
at NCI and at cancer centers, hospitals, community clinics, and
universities across the United States. However, despite NCI's modest
funding increases over the last few years, these increases have not
been proportional with the NIH's, nor has funding kept up with the
growing number of research grants and applications as compared to other
NIH Institutes. This means NCI is actually funding a smaller proportion
of grant applications compared to previous years--12 percent of
applications received funding in 2017 compared to 28 percent in
2017.\2\ In fact, even after counting the additional funding NCI has
received through the Cancer Moonshot Initiative, NCI's budget lags 15.6
percent, or $1.1 billion below what if would have been if funding had
kept pace with biomedical inflation since fiscal year 2003.
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\2\ National Institutes of Health: Research project success rates
by NIH institute. https://report.nih.gov/success_rates/
Success_ByIC.cfm.
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Cancer Registries: Harnessing Data
ASCO also joins the broader cancer community in requesting $555
million for the Centers for Disease Control and Prevention's (CDC)
Division of Cancer Prevention and Control (DCPC), and $70 million for
the CDC's Cancer Registries Program. Funding for the DCPC has remained
virtually flat for 9 years, rising just $1.2 million from fiscal year
2010 ($370.3 million) to fiscal year 2019 ($371.5 million). Cancer
registries are a critical tool for providers and researchers, providing
unparalleled cancer surveillance, identifying emerging trends amongst
different patient cohorts, illustrating the impact of early detection,
and showing the impact of treatment advances on cancer outcomes.
Registries allow providers to collect data in real time and improve
cancer research, public health interventions and treatment protocols.
Additionally, these registries benefit patient cohorts that may be left
out of traditional clinical trials, like racial and ethnic minorities,
women and children, and rural populations.
Supporting Pillars of Care: Clinical Trials and Translational Research
NIH-funded translational research and clinical trials have
significantly improved the standard of care in many diseases. Federal
funding and targeted programs extend cutting edge science to
communities and diverse participants across the United States. Clinical
trials and translational research provide cost-effective treatment
options for many common cancers. They yield insight critical to the
development of targeted therapies, which identify patients most likely
to benefit and help patients who will not benefit avoid the cost and
pain of treatment unlikely to help them. This is where science becomes
practice-changing for patients in America.
ASCO has developed the Targeted Agent and Profiling Utilization
Registry (TAPUR(tm)) Study, which provides access to certain targeted
therapies for patients who are age twelve and older and who have been
identified as candidates for benefitting from those treatments. The
TAPUR Study evaluates use of these molecularly targeted anti-cancer
drugs and collects data on clinical outcomes. As of March 5, 2019,
there are more than 1350 participants enrolled in the TAPUR Study at
more than 110 sites in twenty 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).
ASCO is very concerned that Federal funding is not at a level that
allows NCI to sustain this important network of community practices
that engage in clinical research-and provide an important source of
patients willing to participate. An increase in NCI's budget would
enable the Institute to maintain or increase the number of accruals to
trials and cover the cost of conducting the research.
Bringing Research to the Patient: NIH Funding Spurs Development of New
Treatments
Modern cancer research delivers new treatments to patients faster
than ever, thanks to continuing innovation in research and regulatory
infrastructure. In 2018 the FDA approved 23 cancer therapies for more
than seventeen different types of cancer,\3\ and expanded the use of
adoptive cell immunotherapy, also known as CAR-T cell therapy, which
utilizes the patient's own immune cells to fight cancer. Since 1992
there have been nearly 25 consecutive years of decline in overall
incidence and mortality rates for all types of cancer.\4\ In addition,
the number of people living 5 years or more after a cancer diagnosis is
projected to rise 31 percent by 2026,\5\ representing an increase of
more than four million survivors in less than a decade. Cancer
research, including the advances in this report, helps make progress
possible.
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\3\ CenterWatch; FDA Approved Drugs for Oncology; https://
www.centerwatch.com/drug-information/fda-approved-drugs/therapeutic-
area/12/oncology.
\4\ Bluethmann SM, Mariotto AB, Rowland JH: Anticipating the
``silver tsunami'': Prevalence trajectories and comorbidity burden
among older cancer survivors in the United States. Cancer Epidemiol
Biomarkers Prev 25:1029-1036, 2016.
\5\ Cronin KA, Lake AJ, Scott S, et al: Annual report to the nation
on the status of cancer, part I: National cancer statistics. Cancer
124:2785-2800, 2018.
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ASCO again thanks the subcommittee for its continued support of
cancer patients in the U.S. through funding for the NIH and NCI. We
look forward to working with all members of the subcommittee on an
fiscal year 2020 budget that continues to advance U.S. cancer research.
Please contact Kristin Palmer at [email protected] with any
questions.
[This statement was submitted by Monica Bertagnolli, MD, FASCO,
President, American Society of Clinical Oncology.]
______
Prepared Statement of the American Society of Gene & Cell Therapy
Dear Chairman Blunt, Ranking Member Murray, and Subcommittee
Members:
Thank you for the opportunity to provide this testimony on behalf
of the American Society of Gene & Cell Therapy (ASGCT). ASGCT is a
membership organization consisting of scientists, physicians, and other
professionals involved in the gene and cell therapy fields in settings
such as universities, hospitals, government agencies, foundations, and
biotechnology and pharmaceutical companies.
The Society respectfully requests robust fiscal year 2020
appropriations to the National Institutes of Health to support the
biomedical research that can advance future gene and cell therapies.
Further funding of gene and cell therapy research has the potential to
accelerate the discovery and clinical application of more safe,
effective, and innovative genetic and cellular therapies to alleviate
and ease human disease, which is a core component of the mission of
ASGCT.
significance of nih research funding for gene and cell therapy
NIH funding is crucial to support basic research on biological
targets as well as applied research on new molecular entities, which
both contribute to new therapeutic approvals.\1\ NIH funding
contributed to published research associated with every one of the 210
new drugs approved by the Food and Drug Administration from 2010--
2016.\1\ The development of new therapeutics therefore relies upon this
investment, in order to accelerate the development of new gene
therapies for treatment of as many genetic diseases as possible.
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\1\ Cleary, E.G., Beierlein, J.M., Khanuja, N.S., McNamee, L.M.,
Ledley, F.D. (2018). Contribution of NIH funding to new drug approvals.
In Snyder, S. H. (Ed.) Proceedings of the National Academy of Sciences,
201715368, doi: 10.1073/pnas.1715368115.
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For example, grants provided by the Federal Government have funded
research that has led to clinical trials to treat sickle cell disease.
Sickle cell disease is caused by a single gene mutation that results in
a lack of production of beta globin, a component of hemoglobin (a
protein in red blood cells). This lack of beta globin causes rigid,
sickle-shaped red blood cells that do not carry oxygen as well as
normal cells.\2\ Reduced blood flow and oxygen can cause weakness,
fatigue, slowed growth, severe pain and other serious complications,
such as harm to a patient's liver, brain, eyes, and lungs, among other
organs.\3\
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\2\ Sickle Cell Disease. (n.d.). Retrieved from https://
www.nhlbi.nih.gov/health-topics/sickle-cell-disease.
\3\ Funding Growth Fuels Discovery. (n.d.). Retrieved from https://
www.cincinnatichildrens.org/research/cincinnati/ccrf/funding.
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Cincinnati Children's Hospital, which receives the majority of its
funding through the NIH and ranks second among pediatric hospitals in
funding from the agency, has established a Comprehensive Sickle Cell
Center to combat this disease.\3\ ARU-1801, originally developed in Dr.
Punam Malik's laboratory at Cincinnati Children's Hospital, is an
investigational gene therapy for sickle cell disease that aims to
increase functioning red blood cells by removing a patient's own stem
cells, inserting a functioning gene into the cells outside the body,
and delivering the cells back into the patient.\4\ Preliminary findings
in Phase 1/2 clinical trials showed a substantial reduction in disease
symptoms-near elimination of chronic pain and sickling events, and
improved anemia.\5\
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\4\ Biopharmaceutical Drug Development. (2019). Retrieved from
https://roivant.com/#pipeline.
\5\ Early Clinical Trial Data Show Gene Therapy Reversing Sickle
Cell Anemia. (2018). Retrieved from https://
www.cincinnatichildrens.org/news/release/2018/gene-therapy.
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Federally-funded research has benefits that stretch beyond the
scope of clinical development. In addition to its direct contributions
to gene therapy-related research, NIH-funded research is responsible
for the creation of approximately 440,000 jobs and $69 billion in
economic stimulation.\6\ Furthermore, studies show that NIH investments
in biomedical research stimulate increased private investment; with
every dollar of increase in public clinical research stimulating $2.35
of industry investment at 3 years.\7\ This economic stimulation is even
higher for gene-related research, with a Federal investment of $3.8
billion in the Human Genome Project from 1988 to 2003 helping to drive
$796 billion in economic output, which is a return of $141 for every $1
invested.\8\
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\6\ United for Medical Research: NIH's role in sustaining the U.S.
economy: 2018 update. http://www.unitedformedicalresearch.com/wp-
content/uploads/2018/02/NIHs-Role-in-Sustaining-the-U.S.-Economy-2018-
Update-FINAL.pdf.
\7\ Heymach, J., Krilov, L., Alberg, A., Baxer, N.,Chang, S. M.,
Corcoran, R., ... Burstein, H. Clinical Cancer Advances 2018: Annual
Report on Progress Against Cancer From the American Society of Clinical
Oncology. Journal of Clinical Oncology 2018 36(10), 1020-1044.
\8\ Accelerating Biomedical Research Act, H.R. 5455, 115th Cong.
(2018).
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Need for Additional Gene and Cell Therapy Research
Progress in clinical trials of gene therapies and gene-modified
cell therapies exemplify the vast medical progress that NIH research
has contributed to in these areas, which provides hope for the future.
However, considerable additional scientific study will be necessary for
gene and cell therapies to reach their potential to transform the lives
of patients with multiple additional diseases. Many of the diseases for
which gene therapy offers great promise are rare inherited disorders.
Of the 7,000 rare diseases that exist, 95 percent have no current
treatment.\9\
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\9\ Institute of Medicine (U.S.) Committee on Accelerating Rare
Diseases Research and Orphan Product Development; Field, M.J., & Boat,
T.F., editors. Rare Diseases and Orphan Products: Accelerating Research
and Development. Washington (DC): National Academies Press (U.S.);
2010. Available from www.ncbi.nlm.nih.gov/books/NBK56189. doi:
10.17226/12953.
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Continued strong funding for multiple institutes and centers of the
NIH can support gene and cell therapy research to address this immense
unmet need and the resulting human and economic costs of diseases such
as hemophilia, muscular dystrophy, and retinal disorders that
collectively impact the lives of 10 percent of the U.S. population.\10\
Children with some hereditary diseases cannot walk, or even breathe or
swallow on their own. Tragically, many of these children die young or
become severely disabled by adolescence. For diseases with longer life
expectancy, such as hemophilia, patients face a lifetime of intensive
and expensive medical care. For example, the average lifetime cost of
treating hemophilia A with bypassing agent prophylaxis can range from
$90 million to $99 million.\11\ Developing potentially durable, often
one-time gene therapies for these diseases will require significant
research funding, which will ease or potentially end the human
suffering, and in some cases the high current medical costs, that they
currently incur.
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\10\ Maude, S., Laetsch, T., Buechner, J., Rives, S., Boyer, M.,
Bittencourt, H., ... Baruchel, A. (2018). Tisagenlecleucel in children
and young adults with B-cell lymphoblastic leukemia. N Engl J Med 378,
439-448.
\11\ Pearson, S. (2018). Can We Determine ``Value-based'' Prices
for Gene Therapies? Lecture presented at ASGCT Value Summit,
Washington, DC.
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appropriations request
Since gene and cell therapies are types of regenerative medicine,
ASGCT is grateful for the funding authorized by the 21st Century Cures
Act for the Regenerative Medicine Innovation Project (RMIP).\12\
Appropriations of a total of $22 million in fiscal year 2017--fiscal
year 2019 for RMIP, as authorized, are greatly appreciated, resulting
in funding of 16 grants over the last 2 years.\13\ The Society requests
that the $8 million authorized by the Cures Act for fiscal year 2020 is
appropriated for this initiative.
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\12\ 21st Century Cures Act, H.R. 34, 114th Cong. (2015).
\13\ Funding Opportunities. (2018). Retrieved from https://
www.nih.gov/rmi/funding-opportunities.
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While NIH funding increases have been generous over the past 4
years, the need remains to maintain global leadership in medical
innovation and to compensate for funding that still lags behind funding
levels at the end of the budget-doubling initiative which ended in
2003, when adjusted for biomedical research inflation.\14\ This era
resulted in the grant application success rate diminishing to below
historic averages. Without the current budget restraints, the grant
application success rate could be closer to one in every three
applications. However, fiscal year 2018 produced a grant application
success rate of 22.7 percent.\15\ Increases in funding to the NIH in
general, and to the gene and cell therapy fields in particular, need to
continue to support the potential progress in the development of these
transformative treatments. The Society also requests at least a $2
billion increase in NIH funding for fiscal year 2020, as has also been
proposed by the House Labor, Health and Human Services, Education and
Related Agencies Appropriations Subcommittee.
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\14\ Budget. (2019). Retrieved from https://www.nih.gov/about-nih/
what-we-do/budget.
\15\ Success Rates--NIH Research Portfolio Online Reporting Tools
(RePORT). (2019). Retrieved from https://report.nih.gov/success_rates/.
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In conclusion, because NIH funding can contribute to the
development of new gene and cell therapies to treat diseases with great
unmet medical need, ASGCT encourages the Senate Committee on
Appropriations, Subcommittee on Labor, Health and Human Services,
Education, and Related Agencies to provide robust appropriations in its
fiscal year 2020 funding to the many institutes and centers of the NIH
that engage in gene and cell therapy related research. The Society also
advocates for continued separate, specific appropriations to continue
to fund the Regenerative Medicine Innovation Project. We appreciate
your consideration of these comments.
Sincerely,
Guangping Gao, PhD
President
______
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. These diseases encompass malignant
disorders such as leukemia, lymphoma, and myeloma; life-threatening
conditions, including thrombosis and bleeding disorders; and congenital
diseases such as sickle cell anemia, thalassemia, and hemophilia.
Hematologists have been pioneers in the fields of bone marrow
transplantation, stem cell biology and regenerative medicine, and gene
and immunotherapy.
fiscal year 2020 request: nih funding
ASH thanks Congress for the robust bipartisan support that has
resulted in several consecutive years of welcome and much needed
funding increases for the National Institutes of Health (NIH),
including the $2 billion increase that Congress provided in fiscal year
2019. For fiscal year 2020, ASH strongly supports the Ad Hoc Group for
Medical Research recommendation that NIH receive at least $41.6
billion. This funding level, supported by more than 300 other
stakeholder organizations, would allow for meaningful growth above
inflation in the base budget that would expand NIH's capacity to
support promising science in all disciplines. It also would ensure that
funding from the Innovation Account established in the 21st Century
Cures Act would supplement the agency's base budget, as intended,
through dedicated funding for specific programs.
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 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), and the National Institute on
Aging (NIA), has been an important component of this investment in the
Nation's health.
With the advances gained through an increasingly sophisticated
understanding of how the blood system functions, hematologists have
changed the face of medicine through their dedication to improving the
lives of patients. As a result, children are routinely cured of acute
lymphoblastic leukemia (ALL); more than 90 percent of patients with
acute promyelocytic leukemia (APL) are cured with a drug derived from
vitamin A; older patients suffering from previously lethal chronic
myeloid leukemia (CML) are now effectively treated with well-tolerated
pills; and patients with multiple myeloma are treated with new classes
of drugs. Hematology advances also help patients with other types of
cancers, heart disease, and stroke. Basic research on blood has aided
physicians who treat patients with heart disease, strokes, end-stage
renal disease, cancer, and AIDS.
However, while some blood disorders have benefited from tremendous
progress in clinical research and development of new therapies, other
areas have continuing challenges and have evaded effective treatment to
date. A wide variety of blood-related diseases--from malignancies such
as lymphoma and leukemia to non-malignant diseases such as sickle cell
disease, platelet and coagulation disorders, and orphan diseases of the
hematopoietic system--continue to be associated with significant
morbidity and mortality and demand attention to reduce their burden and
improve quality of care nationwide.
fiscal year 2020 request: report language supporting gene and cellular
therapies
ASH is encouraged that there are a number of gene and cellular
therapies in clinical trials that hold tremendous promise for patients.
The approval of the first chimeric antigen receptor T-cell (CAR-T)
therapy by the Food and Drug Administration (FDA) in August 2017 marked
an important shift in the blood cancer treatment paradigm. CAR-T
therapy is an innovative treatment for certain patients with leukemia
and lymphoma.
While these therapies are potentially curative in many patients who
have typically exhausted all other treatment options, patient access is
currently limited because Medicare reimbursement falls significantly
short of covering the high cost of these therapies, leading to concern
that if reimbursement for these therapies does not improve, it will
threaten innovation in this field. To support continued innovation and
ensure patient access, the Society urges the inclusion of report
language requiring all of the Department of Health and Human Services
(HHS) agencies involved in the research, approval, and reimbursement
for gene and cellular therapies, including NIH, the FDA, and the
Centers for Medicare and Medicaid Services (CMS), to proactively
harmonize their policies to ensure patients will have access to
medically appropriate, approved gene and cellular therapies.
fiscal year 2020 request: centers for disease control and prevention
(cdc)
The Society also recognizes the important role of the Centers for
Disease Control and Prevention (CDC) in preventing and controlling
clotting, bleeding, and other hematologic disorders.
Sickle cell disease (SCD) is an inherited, lifelong disorder
affecting nearly 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. SCD complications
include 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.
Surveillance is necessary to improve the understanding of outcomes
and healthcare system utilization patterns, increase evidence for
public health programs, and establish cost-effective practices to
improve and extend the lives of people with SCD. With funding from the
CDC Foundation, CDC has established a population-based data collection
system to gather and analyze longitudinal data about people living in
the U.S. with SCD. However, due to limited funding, implementation of
the program has occurred in only two States--California and Georgia
(representing approximately 10 percent of the U.S. SCD population).
CDC's SCD Data Collection Program should be maintained and expanded
to include additional States with the goal of covering the majority of
the U.S. SCD population over the next 5 years. In order for expanded
data collection to become a reality, funding must be provided. The
Sickle Cell Disease and Other Heritable Blood Disorders Research,
Surveillance, Prevention, and Treatment Act of 2018 (Public Law 115-
327) authorizes CDC to award SCD data collection grants to States,
academic institutions, and non-profit organizations to gather
information on the prevalence of SCD and health outcomes,
complications, and treatment that people with SCD experience. For
fiscal year 2020, the Society urges the Subcommittee to provide at
least $2 million for SCD data collection within the CDC's National
Center for Birth Defects and Developmental Disabilities, Division of
Blood Disorders. This funding would allow CDC to expand the Data
Collection Program to include additional States, with the goal of
covering the majority of the U.S. SCD population over the next 5 years.
Additionally, ASH supports the public health community's request
for at least $7.8 billion in funding for the CDC in fiscal year 2020.
This funding level would build upon the funding increase Congress
provided CDC in fiscal year 2019 and strengthen all of CDC's programs.
ASH also urges continued support of the Public Health and Prevention
Fund which has supported many critical projects at CDC, including
investments in health-care associated infections. Currently the fund
comprises more than 10 percent of CDC's budget. ASH is concerned about
the repeated efforts to eliminate this fund because of the budgetary
pressure this would place on other programs within the Subcommittee's
jurisdiction.
Thank you again for the opportunity to submit testimony. Please
contact ASH Senior Manager, Legislative Advocacy Tracy Roades at
[email protected], if you have any questions or need further
information concerning hematology research or ASH's fiscal year 2020
requests.
______
Prepared Statement of the American Society of Human Genetics
The American Society of Human Genetics (ASHG) thanks the
Subcommittee for its continued support and leadership in funding the
National Institutes of Health (NIH). The $2 billion increase provided
for fiscal year 2019 reinforced our Nation's commitment to the health
and well-being of all Americans by investing in biomedical research and
scientific innovation. ASHG urges the Subcommittee to appropriate $41.6
billion for the NIH in fiscal year 2020.
My name is Tony Wynshaw-Boris. I am a professor and chair of the
Department of Genetics and Genome Sciences at Case Western Reserve
University. My laboratory studies the biology, specifically the
genetics, of the development and function of the brain.
transforming human health with genomics
The transformative impact of genetics research for fundamental
scientific knowledge and health applications is profound. Thanks to
decades of sustained investment in basic and applied research, we are
moving rapidly into an exciting new era of genetic investigation, novel
application, diagnosis, and treatment. Due to NIH funding of the
development of innovative sequencing technologies, it is now possible
to sequence an individual's genome rapidly and cost-effectively.
Remarkably, whereas fifteen years ago it cost tens of millions of
dollars to sequence a human genome, today it can be done for around a
thousand dollars in about a day.\1\ From diagnosis to prognosis and
treatment, this now-affordable and accessible data about genetic risk
and resiliency for individuals and populations is ushering in a new era
of precision medicine. Genetic and genomic approaches are driving novel
discoveries across the spectrum of biomedical research. These advances
are a central component of the research agenda of most NIH Institutes
and Centers. For fiscal year 2017, $3.3 billion of NIH's $34.2 billion
budget was spent on human genome-associated research projects.\2\
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\1\ https://www.genome.gov/10000008/budget-and-financial-
information/.
\2\ https://report.nih.gov/categorical_spending.aspx.
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To realize the benefits of genetics and genomics research for all
people, NIH-funded basic, translational, and clinical genetics research
must continue if we are to fuel further progress. An illustrative
example is cancer. Today, researchers have discovered more than 50
hereditary cancer syndromes.\3\ Screening for cancer-causing mutations
as a risk indicator, such as mutations in the genes BRCA1 and BRCA2,
allows for increased monitoring and early intervention strategies.
Sequencing tumors for changes that may identify effective drugs for
that particular tumor can be used to guide treatment and improve
prognosis. Finally, the recent approval by the Food and Drug
Administration (FDA) of two gene therapies, Kymriah and Yescarta for
treatment of acute lymphoblastic leukemia and B cell lymphoma
respectively, marks an important breakthrough in cancer treatment
options.\4\ It is essential to continue support and expand research to
develop targeted therapies for the millions of patients across our
country affected by numerous other cancers.
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\3\ https://www.cancer.gov/about-cancer/causes-prevention/genetics/
genetic-testing-fact-sheet.
\4\ https://www.cancer.gov/news-events/cancer-currents-blog/2018/
tisagenlecleucel-fda-lymphoma.
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Another example of progress and future promise can be found with
opioid addiction--a national crisis with increasing burden on public
health. NIH-supported genomics research is revealing new insights into
the complex causes of addiction. Genome-wide association studies have
linked numerous genetic variants to increased risk of opioid
dependence, vulnerability to pain, and subsequent addiction.\5\ We are
also learning more about how genetics affects how the body breaks down
opioids and other drugs. Clinics and hospitals have started using this
information to guide pain management options.\6\
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\5\ Hu, R. et al. 2018. ANCO-GeneDB: annotations and comprehensive
analysis of candidate genes for alcohol, nicotine, cocaine and opioid
dependence. Database 2018.
\6\ Cavallari, L.H. et al. 2019. Multi-site investigation of
strategies for the clinical implementation of CYP2D6 genotyping to
guide drug prescribing. Genetics in Medicine 2019.
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Other studies are focusing on the link between genomics and
infectious diseases. Scientists recently discovered that a genetic
variant in a gene for an antiviral protein is related to the severity
of influenza.\7\ An ongoing clinical trial is testing how genetic
variants in flu vaccine recipients affects their protection from the
flu.\8\
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\7\ Allen, E.K. et al. 2017. SNP-mediated disruption of CTCF
binding at the IFITM3 promoter is associated with risk of severe
influenza in humans. Nature Medicine 23, 975-983.
\8\ http://med.stanford.edu/vaccines/clinical_trials.html.
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The discovery of CRISPR-Cas9 as a gene-editing technique in
research laboratories holds promise as an exciting new approach to
treating diseases. Gene-editing methods can precisely modify a DNA
sequence in a cell to correct the gene variant that is causing disease.
Multiple clinical trials are underway testing gene-editing strategies
as treatments and even cures for diseases such as cancer, sickle cell
anemia, and inherited childhood blindness.\9\
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\9\ https://clinicaltrials.gov/.
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the impact of nih-funded activities extends beyond public health
Return on Federal funding for NIH can also be quantified by its
economic impact. In fiscal year 2017, approximately 83 percent of the
budget was allocated to more than 2,500 universities and institutions
across every State, supported over 400,000 jobs and stimulated $69
billion in economic activity.\10\ An example of this is Yescarta, noted
above, which was a key product in the success of Kite Pharma, which was
acquired for nearly $12 billion by another successful American company,
Gilead Sciences. Likewise, we see a remarkable effect in the genomics
research field. The Human Genome Project alone, and subsequent research
has been shown to yield a total economic output of roughly $1 trillion
and $55 billion in tax revenues over a 24-year span.\11\ Each dollar
invested in genomics research contributed $65 to the U.S. economy.
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\10\ http://www.unitedformedicalresearch.com/advocacy_reports/nihs-
role-in-sustaining-the-u-s-economy2018-update/.
\11\ https://web.ornl.gov/sci/techresources/Human_Genome/publicat/
2013BattelleReportImpact-of-Genomics-on-the-US-Economy.pdf.
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Given NIH's significant impact in many facets of the lives of our
people and the growth and competitiveness of our economy, ASHG joins
the Federation of American Societies for Experimental Biology (FASEB),
and the Ad Hoc Group for Medical Research in recommending a $41.6
billion budget for NIH for fiscal year 2020.
The American Society of Human Genetics (ASHG), founded in 1948, is
the primary professional membership organization for human genetics
specialists worldwide. The Society's nearly 8,000 members include
researchers, academicians, clinicians, laboratory practice
professionals, genetic counselors, nurses and others who have a special
interest in the field of human genetics.
[This statement was submitted by Anthony Wynshaw-Boris, MD, PhD,
President-Elect, American Society of Human Genetics.]
______
Prepared Statement of the American Society of Tropical Medicine and
Hygiene
The American Society of Tropical Medicine and Hygiene (ASTMH)--the
largest international scientific organization of experts dedicated to
reducing the worldwide burden of tropical infectious diseases and
improving global health--appreciates the opportunity to submit
testimony to the Senate Labor, Health and Human Services, Education,
and Related Agencies (LHHS) Appropriations Subcommittee on fiscal year
2020 funding for the Centers for Disease Control and Prevention (CDC)
and National Institutes of Health (NIH) programs addressing tropical
infectious diseases and global health.
Tropical infectious diseases are by no means a new threat and they
continue to pose significant challenges to the U.S. in our ongoing
efforts abroad to improve public health and strengthen our
relationships to the benefit of maintaining our Nation's security.
While we understand the fiscal constraints we face and are sensitive to
the job Congress must do, it is critical that the U.S. maintain robust
funding in global health research and development (R&D) and that we not
continue the current 'funding by crisis' cycle. The best examples of
why this is needed can be seen in our recent response to the Zika and
Ebola outbreaks. Responding to the Zika outbreak required billions of
dollars of global investment that is still needed to support the
development of a vaccine, coordinate mosquito control in at--risk
areas, and monitor the spread of the disease.
We are again alarmed by the deep cuts proposed in the President's
fiscal year 2020 budget, particularly for programs that support these
efforts within CDC and NIH. We strongly advocate that the Subcommittee
continue to support these programs by fully funding NIH and CDC in the
fiscal year 2020 LHHS appropriations bill to protect the health of
Americans and ensure continued U.S. investment in global health and
tropical medicine research and development.
return on investment of u.s.-funded research
The programs at CDC and NIH are critical to advancing research and
development for tropical medicine and global health. Both agencies
employ leading experts who are at the forefront of science and provide
partnerships that lead the U.S. to development of new tools to combat
malaria, tuberculosis (TB), epidemic viruses, neglected tropical
diseases (NTDs) and other infectious diseases. In addition to creating
lifesaving new drugs and diagnostics to aid some of the poorest, most
at-risk people in the world, this research provides jobs for American
researchers and shines a light on the U.S. as a leader in health
innovation. In 2015, 89 cents of $1 the U.S. Government invested in
global health R&D was invested domestically within the U.S., supporting
jobs for American researchers, scientists, and academics.\1\
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\1\ Global Health Technologies Coalition and Policy Cures Research.
(2017). Return on Innovation: Why Global Health R&D is a Smart
Investment for the United States. Retrieved from http://
www.ghtcoalition.org/pdf/Return-on-innovation-Why-global-health-R-D-is-
a-smart-investment-for-the-United-States.pdf.
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tropical disease
Malaria: While we have seen tremendous success as a result of U.S.
funded efforts to eliminate malaria, the disease remains a significant
global health threat. Despite our ability to treat and prevent malaria,
it is still one of the leading causes of death and disease worldwide.
According to the latest estimates, approximately 3.2 billion people
living in 106 countries and territories are at risk for malaria
transmission.\2\ Among these, malaria poses the most significant threat
to poor women and children, but it is also a major threat to our
military and other travelers to the tropics. In 2017, there were about
219 million new cases of malaria and an estimated 435,000 deaths.\3\
Therefore, it is critical that the U.S. Government maintain strong
investments in malaria efforts to ensure a steady decline in the number
of those affected and outbreaks that reach the U.S. In 2015, at least 1
malaria case was reported in each of the 50 States with more than 200
reported in New York City and another almost 60 cases throughout the
State of New York. There were over 100 cases in Maryland, Texas and
California. Historical data shows that our U.S. investments in
eliminating malaria in other countries has a direct correlation with
the exposure in the U.S. A steep decline in malaria cases in Mexico
since 1985 preceded an almost exact decline in the number of U.S. cases
reported from Mexico over the same period of time. As a result of our
collaborative efforts to fight malaria, mortality rates have fallen by
62 percent globally since 2002. Still, approximately every two minutes,
a child needlessly dies of malaria.
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\2\ Centers for Disease Control and Prevention. (2017). Malaria
Facts. Retrieved from https://www.cdc.gov/malaria/about/facts.html.
\3\ WHO Malaria Facts (2017). https://www.who.int/news-room/fact-
sheets/detail/malaria.
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Neglected Tropical Diseases: NTDs are a group of chronic parasitic
and bacterial diseases that represent the most common infections of the
world's poorest people. These diseases cause disfigurement,
debilitation and extreme suffering--reducing cognitive development,
stunting growth, and in some cases leading to death. As a result, NTDs
severely limit the future earning potential of men, women, and children
across the developing world resulting in further economic drain in
already strained countries. These infections are considered a primary
reason why the ``bottom billion''--the 1.4 billion poorest people
living below the poverty line--cannot escape poverty. While there is
adequate treatment for some NTDs, there are many without adequate
treatment or treatments that are not practical for low-resource
settings. Tropical diseases, many of them neglected for decades, impact
U.S. citizens working or traveling overseas, as well as our military
personnel. Some diseases such as dengue fever, chikungunya, and Zika
have even made their way to the U.S. with those like West Nile virus
taking root here. Viruses are but a plane ride away from any point in
the world, and U.S. citizens are inadequately protected and vulnerable.
the centers for disease control and prevention
The Global Health Security Agenda: In partnership with other U.S.
Government agencies, nations, international organizations, and public
and private stakeholders, CDC announced a Global Health Security Agenda
in 2014 to ``accelerate progress toward a world safe and secure from
infectious disease threats and to promote global health security as an
international security priority.'' The Agenda focuses on preventing and
reducing the likelihood of outbreaks, detecting threats early to save
lives, and responding rapidly. The CDC's Center for Global Health and
the National Center for Emerging & Zoonotic Infectious Diseases each
play an important role in these efforts and must be supported through
robust funding to carry out their duties.
The Center for Global Health:
Parasitic Diseases and Malaria: CDC's Division of Parasitic
Diseases and Malaria (DPDM) works to protect the health of Americans
and the global health community through evidence-based public health
action. Specifically, DPDM aims to reduce death, illness, and
disability from parasitic diseases in the United States, help to
eliminate the global burden of malaria and targeted neglected tropical
diseases (NTDs), and advance research to detect, prevent, and eliminate
parasitic diseases.
DPDM appropriated funding has remained unchanged since 2004 with
the exception of a modest increase in fiscal year 2018. With inflation,
DPDM's ``purchasing power'' has diminished by at least 20 percent since
2004. Historically declining/flat funding coupled with inflation has
eroded scientific core capacity. It's ability to address key gaps in
new and improved disease detection and laboratory diagnostic tools
needed to achieve malaria and neglected tropical disease elimination
goals is diminished. Without increased funding it is highly likely that
DPDM will have to reduce diagnostic services for parasitic diseases in
the U.S., have longer turnaround times for serologic testing, face the
inability to purchase/replace important diagnostic test equipment,
could stop testing of vectors sent in from State and local health
departments for parasitic diseases, and lack sufficient funds to
purchase and stock artesunate and transport it to regional centers
nationally for treatment of severe malaria. Artesunate is the only drug
available to treat the hundreds of cases of severe malaria seen each
year in the United States, and it is available only through the CDC.
Further, CDC could be unable to continue to purchase and release
the drugs currently only available through CDC, for treatment of life-
threatening parasitic diseases. Current efforts to develop new
diagnostic tests could be halted, leaving national and international
public health laboratories with antiquated diagnostics methods.
Ultimately, CDC's ability to respond quickly to outbreaks of parasitic
infections could be limited and the technical support and staff it
provides to efforts such as the President's Malaria Initiative and
USAID's NTD program may need to be curtailed.
ASTMH encourages the subcommittee to continue to fund a
comprehensive approach to malaria and parasitic disease prevention and
treatment efforts through the Malaria and Parasitic Disease program.
ASTMH continues to be alarmed that the budget request for this program
has remained stagnant for over a decade. The lack of even modest
increases for so long, with exception to fiscal year 2018, has
effectively cut the program's budget year-over-year as overhead and
research costs continue to rise. In order to provide for the
continuation of the vital work of this program, we respectfully request
$30 million for the CDC's Center for Global Health's Parasitic Disease
and Malaria Program for fiscal year 2020.
The National Center for Emerging & Zoonotic Infectious Diseases
(NCEZID) and its Vector Borne Disease Program (VBDP) funds essential
surveillance and monitoring activities that protect the U.S. from
deadly infections before they reach our borders and address the
problems of tick and flea transmitted infections such as Lyme disease
and a dozen other infections, including Zika and Ebola, that can be
life-threatening within the U.S.
The CDC's Advanced Molecular Detection (AMD) program has brought
next generation sequencing capabilities to the U.S. public health
system, using DNA sequencing to address a wide range of infectious
disease threats as well as antibiotic resistance. As a result, CDC has
transformed how public health tracks and responds to these threats. Due
to the rapid pace of technology change, we must ensure that the U.S.
does not fall behind in the utilization of these emerging technologies.
ASTMH encourages the subcommittee to recognize the critical role
that NCEZID and its VBDP and AMD program play in ongoing efforts to
prepare for and fight tropical diseases emerging on U.S. soil, such as
dengue, Chikungunya and now Zika. We also ask the subcommittee to
encourages CDC to provide an update in the fiscal year 2021
congressional justification on challenges associated with ongoing
technological advancements and a plan for how the AMD program will
continue to maximize the potential of new technologies play in ongoing
efforts to prepare for and fight tropical diseases emerging on U.S.
soil, such as Dengue, Chikungunya and now Zika.
national institutes of health
Fogarty International Center (FIC): To protect the health and
safety of Americans, the FIC has for three decades managed grant
programs that develop scientific expertise in developing countries,
ensuring there is local capacity to detect and address pandemics at
their point of origin, contain outbreaks and minimize their impact.
After all, we are all only as safe as our weakest link. More than 80
percent of FIC's approximately $54 million extramural grant making
budget goes to U.S. institutions to support scientists' salaries and
other costs. FIC programs fund over 500 projects involving about 100
U.S. universities. 100 percent of FIC grant awards in fiscal year 2016
involved U.S. researchers.\4\
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\4\ National Institutes of Health. (2018). The John Edward Fogarty
International Center: Fogarty at 50. Retrieved from https://
www.fic.nih.gov/News/Publications/Documents/fogarty-international-
center-overview.pdf.
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Recent disease outbreaks such as Ebola, Zika, and Dengue have shown
the importance of the Center's essential role in global infectious
disease health research training and health system strengthening to
help developing countries advance their own research, health solutions
and tools. FIC has developed important partnerships in countries,
including countries unfriendly to the U.S., to not only fight malaria,
NTDs, and other infectious diseases, but also to have the capabilities
to help the U.S. detect and treat infectious diseases before they
travel to the United States thus protecting Americans here at home.
Ultimately, Fogarty plays a critical role in ensuring U.S.
preparedness and our ability to protect our citizens against the next
pandemic threat. Since 2008, Fogarty, in partnership with the
Department of Homeland Security, has coordinated an effort to better
predict and prevent the spread of infectious diseases in humans and
animals, recently building out predictive risk maps to understand and
forecast the spread of the Ebola and Zika virus epidemics. With these
computational tools and data, policymakers can make informed decisions
on how to respond to outbreaks.
ASTMH encourages the subcommittee to continue FIC's important work
building relationships with scientists abroad to foster a stronger and
more effective science workforce and health capacity on the ground,
helping to detect infectious diseases and building the capacity to
confront those diseases while improving the image of the U.S. though
health diplomacy in their countries. Investments such as this are
critical to protecting Americans from the next disease to cross our
borders.
National Institute of Allergy and Infectious Diseases: NIAID is the
lead institute for malaria and NTD research. In the past 2 years, NIAID
has reported significant progress in addressing malaria, including the
launch of a Phase 1 clinical trial for a new investigational drug to
treat malaria and the recent development of low-cost diagnostic tests
that can rapidly detect resistance of malaria to artemisinin, a first-
line antimalarial drug. Resistance to artemisinin is a growing danger
and one that we must be aggressively addressing. NIAID also helped lead
accelerated trials of an Ebola vaccine and is working on important Zika
research. Consistent investment is critical to achieve the drugs,
diagnostics, and research capacity needed to control malaria, NTDs,
Zika and Ebola.
ASTMH encourages the subcommittee to continue its investment in
malaria and NTD research, including work in late-stage and
translational research for NTDs, and to work with other agencies to
foster research and ensure that basic discoveries are translated into
much needed solutions.
conclusion
The vast majority of infectious diseases do not emerge in the U.S.,
instead they thrive elsewhere often long before a catalytic event
occurs that rapidly mobilizes the threat bringing it to the U.S. It is
our lack of urgency and response to address these threats while they
exist as remote tropical diseases that allows their spread and
increases our domestic vulnerabilities. It is not a question of whether
a new infectious disease outbreak will occur, it is a matter of when
and what it will be. For this reason, Congress needs to support
sustainable investments in U.S. global health R&D to increase our
knowledge, understanding, and tools to confront infectious disease.
ASTMH appreciates the opportunity to share its expertise and we hope
you will provide the requested fiscal year 2020 resources to those
programs identified above that will help improve the lives of Americans
and the global poor.
[This statement was submitted by Chandy C. John, MD, MS, President,
American Society of Tropical Medicine and Hygiene.]
______
Prepared Statement of the American Thoracic Society
SUMMARY: FUNDING RECOMMENDATIONS
[In millions $]
------------------------------------------------------------------------
National Institutes of Health..................... At least $41.6
billion
National Heart, Lung & Blood Institute........ 3.710
National Institute of Allergy & Infectious 5.761
Disease......................................
National Institute of Environmental Health 909
Sciences.....................................
Fogarty International Center.................. 82.9
National Institute of Nursing Research........ 173.4
Centers for Disease Control and Prevention........ 7.800
National Institute for Occupational Safety & 339.1
Health.......................................
Asthma Programs............................... 34
Div. of Tuberculosis Elimination.............. 195.7
Global Tuberculosis (DGHT).................... 21
Office on Smoking and Health.................. 310
National Sleep Awareness Roundtable (NSART)... 1
------------------------------------------------------------------------
The ATS's 16,000 members help prevent and fight respiratory disease
through research, education, patient care and advocacy.
lung disease in america
Respiratory diseases are the third leading cause of death in the
U.S., responsible for one of every seven deaths. Diseases affecting the
respiratory (breathing) system include chronic obstructive pulmonary
disease (COPD), lung cancer, influenza, sleep disordered breathing,
pediatric lung disorders, tuberculosis, occupational lung disease,
asthma, and critical illnesses such as sepsis.
national institutes of health
The NIH is the world's leader in groundbreaking biomedical health
research into the prevention, treatment and cure of diseases such as
lung cancer, COPD and asthma. The ATS thanks Congress for the $3
billion funding increase for NIH in fiscal year 2018. In order to
continue to accelerate the development of life-saving cures and
treatments and innovative prevention interventions, it is essential for
Congress to continue providing robust, predictable funding increases
across the full spectrum of NIH-supported research. The ATS is
concerned that due to past reductions in Federal research funding,
there remains a lack of opportunities for young investigators who are
the future of scientific innovation. We ask the subcommittee to provide
at least $41.6 billion in funding for the NIH in fiscal year 2020.
Despite the fact that respiratory disease is the third leading
cause of death in the U.S., respiratory research is underfunded. The
COPD death rate has doubled within the last 30 years and is still
increasing, while the rates for the other top causes of death (heart
disease, cancer and stroke) have decreased by over 50 percent. Despite
the rising respiratory disease burden, research funding for the disease
is disproportionally low relative to funding invested for the other
three leading causes of death. In order to stem the devastating effects
of respiratory disease, research funding must grow.
copd
Chronic Obstructive Pulmonary Disease (COPD) is the fourth leading
cause of death in the United States and the third leading cause of
death worldwide, yet the disease remains relatively unknown to most
Americans. CDC estimates that 12 million patients have COPD; an
additional 12 million Americans are unaware that they have this life-
threatening disease. COPD costs the economy almost $50 billion a year,
including $29 billion in direct health expenditures and $29 billion in
indirect costs such as lost wages.
The COPD National Action Plan, released in 2017, aims to expand
surveillance and research on the disease, develop public health
interventions and increase public awareness of the disease. The ATS
urges Congress to provide NHLBI with $75 million in fiscal year 2020
for implementation of the COPD National Action Plan through the NHLBI
and an additional $3 million for CDC to conduct COPD surveillance
activities. We also urge CDC to include COPD-based questions to future
CDC health surveys, including the National Health and Nutrition
Evaluation Survey (NHANES), the Behavioral Risk Factor Surveillance
System (BRFSS) and the National Health Information Survey (NHIS).
centers for disease control and prevention
In order to ensure that health promotion and chronic disease
prevention are given top priority in Federal funding, the ATS supports
a funding level for the Centers for Disease Control and Prevention
(CDC) that enables it to carry out its prevention mission and ensure a
translation of new research into effective State and local public
health programs. We ask that the CDC budget be adjusted to reflect
increased needs in chronic disease prevention, infectious disease
control, including TB control and occupational safety and health
research and training. The ATS recommends a funding level of $7.800
billion for the CDC in fiscal year 2020.
antibiotic resistance
In November 2018, the Journal of Infection Control and Hospital
Epidemiology reported that as many as 162,044 people die in the U.S.
each year as a result of antimicrobial resistant infections, including
drug resistant pneumonia and sepsis infections. The rise of antibiotic
resistance demonstrates the need to increase efforts through the CDC,
NIH and other Federal agencies to monitor and prevent antibiotic
resistance and develop rapid new diagnostics and treatments. This
includes the following recommendations for CDC programs:
--$200 million for the Antibiotic Resistance Solutions Initiative
--$22.75 million for the National Healthcare Safety Network (NHSN)
--$32.5 million for the Advanced Molecular Detection (AMD) Initiative
We urge the committee to provide $5.761 billion for the National
Institutes of Allergy and Infectious Disease (NIAID) to spur research
into rapid new diagnostics, new treatments and other activities and
$750 million for the Biomedical Advanced Research and Development
Authority (BARDA) to support antimicrobial research and development.
tobacco control
Tobacco use is the leading preventable cause of death in the U.S.,
responsible for one in five deaths annually. Tobacco cessation and
prevention activities are among the most effective and cost-effective
investments in disease prevention. The CDC's Office on Smoking and
Health (OSH) is the lead Federal program for tobacco prevention and
control and created the ``Tips from Former Smokers'' Campaign, which
has prompted hundreds of thousands of smokers to call 1-800-QUIT-NOW or
visit smokefree.gov for assistance in quitting--with even more smokers
making quit attempts on their own or with the assistance of their
physicians. The ATS recommends a total funding level of $310 million
for the Office of Smoking and Health in fiscal year 2020.
asthma
Asthma is a significant public health problem in the U.S.
Approximately 26 million Americans currently have asthma. In 2016,
3,274 Americans died as a result of asthma exacerbations. Asthma is the
third leading cause of hospitalization among children under the age of
15 and is a leading cause of school absences from chronic disease.
African Americans have the highest asthma prevalence of any racial/
ethnic group and the age-adjusted death rate for asthma in this
population is three times the rate in whites. A study published in the
American Journal of Respiratory Critical Care in 2012 found that for
every dollar invested in asthma interventions, there was a $36 benefit.
We ask that the subcommittee provide $34 million in fiscal year 2020
for CDC's National Asthma Control Program.
tuberculosis
Tuberculosis (TB) is the leading global infectious disease killer,
ahead of HIV/AIDS, claiming 1.6 million lives each year. In the U.S.,
every State reports cases of TB annually and in 2018, twenty-two States
reported TB increases. The CDC has identified drug resistant TB as a
serious public health threat to the U.S. Drug-resistant TB strains pose
a particular challenge to domestic TB control due to the high costs of
treatment, intensive healthcare resources and burden on patients.
Treatment costs for multidrug-resistant (MDR) TB, which is up to 2
years in length, range from $100,000 to $300,000. The continued global
pandemic of this airborne infectious disease and spread of drug
resistant TB demand that the U.S. strengthen our investment in global
and domestic TB control and research to develop new TB diagnostic,
treatment and prevention tools.
CDC's work on global TB is underfunded and is mostly transferred in
through other accounts. Increasing CDC's Division of Global HIV and TB
funding to $21 million, would allow the agency to use its unique
technical expertise to address the nexus between the global TB epidemic
and the incidence of TB in the U.S. We request that this funding be
provided directly through a new budget line for CDC's work on global
TB.
The ATS recommends a funding level of $195.7 million in fiscal year
2020 for CDC's Division of TB Elimination. and new line-item funding of
$21 million for CDC's Global TB program through the Center for Global
Health. We urge the NIH to expand research to develop new tools to
address TB. Additionally, in recognition of the unique public health
threat posed by drug resistant TB, the ATS urges BARDA to support
research and development into new drug-resistant TB diagnostic,
treatment and prevention tools.
sleep
Several research studies demonstrate that sleep-disordered
breathing and sleep-related illnesses affect an estimated 50-70 million
Americans. The public health impact of sleep illnesses and sleep
disordered breathing is still being determined, but is known to include
increased mortality, traffic accidents, cardiovascular disease,
obesity, mental health disorders, and other comorbidities. The ATS
recommends a funding level of $1 million in fiscal year 2020 to support
activities related to sleep and sleep disorders at the CDC, including
surveillance activities and public educational activities. The ATS also
recommends an increase in funding for research on sleep disorders at
the NHLBI's Nation Center for Sleep Disordered Research (NCSDR).
pediatric lung disease
The ATS is pleased to report that infant death rates for various
lung diseases have declined for the past 10 years. Many of the
precursors of adult respiratory disease start in childhood. For
instance, many children with respiratory illness grow into adults with
COPD. It is estimated that 6.1 million children suffer from asthma.
While some children appear to outgrow their asthma when they reach
adulthood, 75 percent will require life-long treatment and monitoring
of their condition. The ATS encourages the NHLBI and NICHD to sustain
and expand research efforts to study lung development and pediatric
lung diseases.
critical illness
The burden associated with the provision of care to critically ill
patients is enormous, and is anticipated to increase significantly as
the population ages. Approximately 200,000 people in the United States
require hospitalization in an intensive care unit because they develop
a form of pulmonary disease called Acute Lung Injury. Despite the best
available treatments, 75,000 of these individuals die each year from
this disease. This is the approximately the same number of deaths each
year due to breast cancer, colon cancer, and prostate cancer combined.
Investigation into diagnosis, treatment and outcomes in critically ill
patients should be a priority, and the NIH should be funded and
encouraged to coordinate investigation in this area in order to meet
this growing national imperative.
researching and preventing occupational lung disease
As Congress considers funding priorities for fiscal year 2020, the
ATS urges the subcommittee to provide at least $339.1 million in
funding for the National Institute for Occupational Safety and Health
(NIOSH). NIOSH, within the CDC, is the primary Federal agency
responsible for conducting research and making recommendations for the
prevention of work-related illness and injury. The ATS appreciates the
opportunity to submit this statement to the subcommittee.
legislative riders
We urge the Senate to refrain from considering legislative riders
in this and all appropriations bills. By refraining from considering
legislative riders, Congress can more swiftly complete its
constitutional obligation for completing appropriations bills in a
timely manner.
[This statement was submitted by James Beck, MD, President,
American Thoracic Society.]
______
Prepared Statement of the Animal Welfare Institute
The Animal Welfare Institute appreciates the opportunity to submit
testimony on fiscal year 2020 spending priorities for the U.S.
Department of Health and Human Services.
protecting animals with shelter (section 12502 of the farm bill)
When there is violence in the home, it can be directed at everyone-
spouse or partners, children, elderly family members, and companion
animals. Abusers are well aware of the bond between their victims and
their pets. They exploit that bond to frighten, control, manipulate,
and even ``punish'' their human victims.
Unfortunately, few domestic violence survivors have access to
shelters that can protect them and their pet; in fact, large numbers
delay escaping out of fear for the safety of the pets left behind.
Several surveys bear the grim statistics:
--As many as 48 percent of the battered women reported they had
delayed leaving a dangerous situation out of concern for their
companion animals' safety.
--Between 49 percent and 86 percent reported that their pets had been
threatened, harmed, or killed by their partners.
--85 percent of domestic violence shelters indicated that women
coming to their facilities spoke of incidents of pet abuse.
Congress has wisely sought to address this shortage of resources.
Section 12502 of Public Law 115-334, the Agriculture Improvement Act of
2018, authorizes a grant program to provide emergency and transitional
shelter and housing options for domestic violence survivors with
companion animals. It is urgent that Congress now appropriate the
authorized funding and direct the agencies involved to take all
necessary steps to implement the program. If shelters and other service
providers can help domestic violence survivors find a safe place for
their companion animals, they will be better able be to bring everyone
to safety. The PAWS provision will greatly increase their capacity to
meet these critical needs.
Requested Report Language: The Committee directs the Secretary of
Health and Human Services to enter into consultations with the
Secretary of Agriculture as soon as possible, and enter into any
memoranda of understanding as directed, in order to establish during
fiscal year 2020 the requirements for grant application and execution
under Section 12502 of Public Law 115-334, the Agriculture Improvement
Act of 2018, to provide emergency and transitional shelter and housing
options for domestic violence survivors with companion animals.
[This statement was submitted by Nancy Blaney, Director, Government
Affairs.]
______
Prepared Statement of Arline Katherine deg.
Prepared Statement of Katherine Arline
Thank you for the opportunity to submit testimony related to a
matter that is close to my heart. My name is Katherine Arline, and I
work for a rare-cancer focused biotech company called SHEPHERD
Therapeutics. We may be the only pan rare-cancer focused company in the
world, and that is significant for reasons I'll discuss below. More
important, though, is the reason I work at SHEPHERD. Two years ago,
when he was 36, my fiance had a seizure one night as we were preparing
dinner. With no prior warning, we entered a whirlwind of MRIs, doctors,
and varying potential diagnoses. But what I remember most of that first
evening is that while he slept, I sat staring at his bed and knowing
that the future we had dreamed of was lost, or at the very least
changed forever.
We are fortunate to live in Boston and have access to outstanding
hospitals conducting research into his form of cancer,
oligodendroglioma. He was lucky to have an established treatment
protocol--albeit decades old--and is doing well now. But when his tumor
starts growing again, there will be little to offer him beyond surgery
that will change his life permanently, and therapies which have not
been extensively tested on his cancer.
Everything changed after that day. The realization of how few
options there are for cancer patients like my fiance, drove me to
change my career and life and come to work for SHEPHERD. SHEPHERD was
founded by another patient, David Hysong, who at age 27, while
undergoing Navy SEAL selection training, collapsed and, like my fiance,
was diagnosed with a rare cancer, this one called adenoid cystic
carcinoma. As I did, David quickly discovered that ``modern'' medicine
is a myth for far too many patients. David had his tumor surgically
removed. But when his cancer returns, as it is likely to do, he may
have no choices beyond more surgery, radiation, chemotherapy that is
ineffective for his cancer, and other treatments which have not been
proven to work for his cancer.
Since I joined SHEPHERD, I have led a team conducting research
about rare cancers, including their forms, incidence, disparities
surrounding diagnosis and care, challenges of treatment, and outcomes.
We had to undertake this work because this type of information is
lacking for rare cancers. To complete this work, we reviewed government
and public databases, scoured cancer publications on PubMed, talked
with researchers, and tracked information from patient foundations.
Initially, our goal was to find the cancers that had sufficient basic
science and demographic data to make them ready for drug development
and for clinical trials. We soon learned just how many rare cancer
patients are faced with vanishingly small odds of receiving a modern
standard of care during the course of their disease. We learned that
``rare'' is the wrong word to describe a diagnosis that almost 1 in 3
new cancer patients will receive this year.
At that point, our research took on another purpose entirely. We
aimed to use the information we found to help the government and the
public understand that ``rare isn't rare''--and that giving patients a
highly specific diagnosis, defined by molecular diagnostics and
supported by adequate basic science, patient foundations, and
organizations like SHEPHERD can turn a diagnosis into a superpower, and
not a death sentence.
From our research, we have learned that 380 out of the 400 forms of
cancer we have identified meet the most conservative estimate of what
constitutes a rare cancer, the American Cancer Society's metric of
fewer than 6 new diagnoses per 100,000 people per year. That's 95
percent of all forms of cancer, which collectively will afflict over
550,000 new patients this year. As additional genetic tests lead to
further subsetting of large cancers into distinct forms, more and more
cancers will become rare--and potentially suffer from the disparities I
outline below.
A number of special populations face additional burdens from rare
cancers. While it is well known that all pediatric cancers are rare,
many may not realize that minorities, service members, and veterans are
disproportionately faced with rare cancer diagnoses. In particular,
those who have served our country in uniform are disproportionately
affected by over 60 forms of cancer. Almost 70 percent of those cancers
are rare, and only 25 of them have an FDA approved targeted therapy.
Many of those cancers are potentially caused by service-related
exposures such as asbestos, burn pits, radiation, and Agent Orange.
Tragically, according to a National Academy of Sciences study, the
children of veterans who were exposed to Agent Orange may also have an
increased risk of certain cancers, like AML.
In addition, African Americans, Asian Americans, Hispanic
Americans, American Indians, Alaska Natives, and underserved Caucasians
are more likely than the general population to have a higher incidence
and death rate for certain types of rare cancer. Rare cancers in
particular occur more frequently among Hispanics and Asians and Pacific
Islanders when compared with non-Hispanic blacks and whites. Moreover,
these populations frequently suffer from worse outcomes and shorter
survival times. African American cancer patients in particular have a
lower 5-year survival rate than white patients.
Clinical trials are in some cases a cancer patient's best option
for treatment. However, rare cancer patients face disparities in access
there as well. Our analysis of all clinical trials between 2012 and
2016 showed that 74.89 percent of all trials did not include even one
rare cancer. Only around 13 percent of all rare cancers were
specifically named as a focus of a phase 3 clinical trial in those 5
years. More than 4 times as much money in that timeframe was spent on
non-rare cancer trials than on trials which included a rare cancer. For
minorities, these discrepancies are amplified, as minorities are less
likely than Caucasians to be included in clinical trials, which can
lead to underrepresentation of key biological variables that make drugs
less effective among those populations.
And while many new drugs are arriving on the market for rare cancer
patients, it is still the case that the vast majority of new cancer
patients--over 80%--who lack even one FDA-approved targeted therapy for
their cancer are rare cancer patients. What is the significance of a
targeted therapy? Unlike radiation and chemotherapy, targeted therapies
can affect cancer cells more specifically than older forms of therapy,
which means patients may experience fewer side effects. Targeted
therapies can attack the causes of a cancer by silencing overactive
genes, boosting suppressed genes, or stimulating an immune response. In
a word, targeted therapies are the future. The good news is that for
many cancer patients, they are also the present, and myriad success
stories exist of remarkable improvements in health and long-term
responses to targeted therapies as well as combinations of targeted
therapies with traditional radiation and chemotherapy. Unfortunately,
and as ever, rare cancer patients suffer from disparities in access to
these newer treatments. As of February 2019, 182 cancers lacked a FDA-
approved targeted therapy. 181 of them were rare cancers. That means
that in 2019 almost 200,000 new rare cancer patients will face their
diagnosis without a modern treatment.
Chemotherapy and radiation remain important tools to fight cancer
in the absence of targeted therapies, and in conjunction with them. But
all therapies are best used in the context of decisionmaking informed
by evidence provided by clinical trials. Without an approved standard
of care, however, clinicians treating rare cancers frequently default
to radiation and chemotherapy, even without a data suggesting that such
a treatment protocol will work for a given cancer.
Unfortunately, off-label and compassionate use of targeted
therapies are not a solution for this problem. Without coverage from
insurance, rare cancer patients who are forced to use off-label drugs,
because there are no good options for their cancer, can face bankruptcy
due to the cost of paying for drugs out of their pocket. The cost of
travel to clinical trials, when they are available, contributes to this
financial burden.
The reasons we find ourselves in this situation are myriad, but
fundamentally they come down to money. Clinical trials are expensive to
run, and pharmaceutical companies are unlikely to choose to run a
clinical trial in a small indication with few patients when a drug will
work for a large population, even if that population already has dozens
of drugs available for use, and even if that drug is a ``me too''
therapy which provides little benefit over the current standard of
care. Most companies assess the numbers for rare cancers and decide
that the cost of drug development cannot be justified by the potential
market for a rare cancer like adenoid cystic carcinoma, which has
around 1,200 new patients a year.
Fortunately, in the last few years, the FDA has encouraged new
trial designs that allow trials to be run which target the molecular
drivers of a cancer, allowing all patients whose tumors exhibit that
trait to potentially be included in the trial. This is science at its
best. In November 2018, the effectiveness of this approach was proven
when Loxo Pharmaceuticals received approval for larotrectinib, a
therapy for solid tumors with NTRK gene fusions. Those fusions occur in
just 1 percent of cancers, but because Loxo was considering the entire
cancer patient population, the drug was economically feasible to
develop. This drug was approved on the basis of results from the first
55 patients enrolled in their trial and achieved a stunning overall
response rate of 75 percent. Compared to the response rates at time of
FDA approval of other oncology drugs, such as 10 percent for sorafenic,
28 percent for tivozanib, and 26 to 52 percent for PD1 inhibitors,
larotrectinib represented a breakthrough in therapeutic benefit. This
is the power of targeted therapies, used intelligently, for the benefit
of all patients.
This is what the future looks like. But to take all patients into
that future, data is required, and data starts with patients even being
offered the option to have their tumors analyzed, to understand what
actual genetic causes lay behind their cancer, and to understand which
clinical trials and molecularly targeted therapies may be appropriate
for them. Last year, CMS acted to ensure that Medicare and Medicaid
patients whose cancer recurs after treatment receive molecular
diagnostics. However, cancers which are newly diagnosed are still
infrequently typed molecularly; when molecular testing is conducted, it
may be paid for by the hospital or by donors rather than by an
insurance carrier--thus magnifying disparities in care between those
who are able to access well-funded care centers and those who are not.
This can contribute to the use of therapies that are ineffective or
inappropriate for a given patient.
Data from molecular typing can end up, with patients' permission,
as part of research studies, and some of those studies share their data
in publicly available sources. At the most fundamental level, that raw
data is required to drive scientific understanding of what causes a
disease, the types of therapies which may work on it, and the ability
to recruit sufficient numbers of patients for molecularly-targeted
clinical trials like the one Loxo was able to run. Even when tumor
samples are obtained, the collection frequently occurs after a first
round of treatment rather than at the time of diagnosis. Having data
only from recurrent disease can make it more difficult for researchers
and drug developers to understand what is truly causing a cancer, since
mutations that occur after treatment in metastatic tumors look and act
differently from the original disease. This underscores the need for
frontline diagnostics.
Unsurprisingly, there are significant data gaps for rare cancers.
Research we presented at the American Association of Cancer Researchers
on April 2, 2019 showed that over 120 cancers, all rare, had no
datasets in the Gene Expression Omnibus (GEO) repository, one of the
most significant genomic data repositories in the world. Those rare
cancers which were included had, on average, only 1 dataset per cancer.
That amount of data is inadequate to power the most promising data
analytic techniques currently available. In contrast, non-rare cancers,
on average, had over 22 datasets per cancer, composed of hundreds or
thousands of patients in aggregate. Our analysis showed a statistically
significant correlation between the availability of GEO datasets and
the availability of an FDA-approved targeted therapy for a given
cancer. Cancers without a GEO dataset were 6.8 times less likely to
have a targeted therapy than those with even one publicly available
dataset.
Why have we arrived at this situation? Are rare cancers harder to
research, diagnose, and treat? In most cases, we believe the answer is
no. What is lacking is the funding, research, and amount of data
sufficient to allow new therapies to be developed and tested in the
clinic. That, fundamentally, is an economic problem, and it starts with
spending in the Federal Government, since NIH is a highly significant
underwriter of basic and translational research.
As a government, as corporations, and as a people, we will save the
lives we choose to save. Every day, new research is paving the way for
scientific advances that will make cancer a chronic or even a curable
condition. Rather than family members watching helplessly as their
loved ones suffer and die, we can empower them to understand their
disease and to receive the best standard of care possible. But unless a
commitment is made to share these advances with all new cancer
patients, we risk widening the gap between those ``lucky'' enough to be
diagnosed with a common cancer and those unlucky enough to be diagnosed
in the wrong place, in the wrong way, and with the wrong disease.
That is why we are asking you to make a commitment to treat all
cancer patients as equally deserving of dignity, and of a chance at
life. That path starts with the commitment of the United States
Government, of the NIH, NCI, NCATS, and the other agencies that work
tirelessly to advance basic and translational science. Before more
money is allocated for common cancers with 99 percent cure rates, we
ask that you consider the patients with no modern standard of care, no
access to clinical trials, no Federal spending for their disease--and
no hope.
Please stand with us and make a pledge to double Federal spending
on rare cancers, to incentivize the coverage of frontline molecular
diagnostics for all newly diagnosed patients, and to prioritize
research, data sharing, and translational development for cancers that
lack an FDA approved targeted therapy. Behind the statistics are over
half a million Americans who at this moment do not know that during the
course of this year they will be diagnosed with a cancer for which
there is frequently no treatment beyond what their parents or even
their grandparents would have been offered. Science sees no second
class citizens, only patients in need of help. We ask the United States
Government to do the same. Please commit to ensuring that as a country,
we will no longer allow any cancer patients to be overlooked,
forgotten, or left behind.
______
Prepared Statement of the Arthritis Foundation
On behalf of the 54 million adults and 300,000 children living with
doctor-diagnosed arthritis in the United States, the Arthritis
Foundation thanks Chairman Blunt and Ranking Member Murray for the
opportunity to provide written testimony to the Appropriations
Subcommittee on Labor, Health and Human Services (HHS), and Education
and Related Agencies for fiscal year 2020. We respectfully request $16
million for the Centers for Disease Control and Prevention (CDC)
Arthritis Program as well as sufficient funding for the National
Institutes of Health (NIH) broadly, with a specific request of $673
million for the National Institute of Arthritis and Musculoskeletal and
Skin Diseases (NIAMS) in fiscal year 2020.
Arthritis affects 1 in 4 Americans and is the leading cause of
disability in the United States, according to CDC. It limits the daily
activities of over 23 million Americans and causes work limitations for
40 percent of the people with the disease. This translates to over $300
billion a year in direct and indirect costs. There is no cure for
arthritis, and for some forms of arthritis like OA, there is no
disease-modifying pharmaceutical therapy. Research is critical to build
towards a cure, develop better treatments with fewer severe side
effects, and identify biomarkers and therapies for types of arthritis
for which none exist. A strong investment in public health research and
programs is essential to making breakthroughs in treatments, finding a
cure for arthritis, and for delivering those breakthroughs to the
people who suffer from this debilitating disease.
centers for disease control and prevention arthritis program
The CDC Arthritis Program is the only Federal program dedicated
solely to arthritis. Today, the program provides grants to 13 States to
support evidence-based disease management programs. The program aims to
connect all Americans with arthritis to resources to help them manage
their disease. Evidence-based programs like Walk With Ease help keep
older adults active, and have shown a 35 percent improvement in
physical function, resulting in fewer hospitalizations and lower health
costs compared to non-participants.
A member of the Arthritis Foundation staff had the opportunity to
meet with two Walk With Ease classes in the Shreveport, Louisiana area
in December 2018. The tremendous impact of the program on these
participants' lives cannot be overstated. They described the exercises
and activities as the things that keep them going: ``Before I started
the program I couldn't really walk, and now that I do the program I am
walking all over town.'' When participants were asked to share their
greatest challenges with living with arthritis or other musculoskeletal
pain, the value of the program came up--unprompted--as the ``reason to
get out of bed.''
Given the high prevalence and severity of this disease, the
Arthritis Program is woefully under-funded compared to the investment
in other chronic diseases. From a historical perspective, funding for
the program was cut by 25 percent in fiscal year 2015, bringing the
fiscal year 2015 total down from $13 million to $9.5 million. As a
result, program staff had to cut program activities between 10 and 50
percent, with some eliminations, and were unable to make new
investments in arthritis programs. While $1.5 million was restored in
fiscal year 2016, the Arthritis Program is still not operating at its
funding level of $13.3 million during fiscal year 2010. Combined with
previous flat funding, the program has lost millions of dollars in
purchasing power over the last 8 fiscal years.
The latest data from the CDC Arthritis Program estimates that
arthritis now affects 20 percent of the population in 48 of 50 States,
bolstering the need for all 50 States to receive funding from the
program. While this is a long-term goal, a critical first step is to
increase funding in fiscal year 2020 by $5 million (for a total of $16
million) so the program can continue its current level of operations
and begin to expand into additional States. With a $5 million increase,
the Arthritis Program could:
--Continue important data collection on arthritis prevalence and
public health impacts;
--Support up to six (6) new State programs for a total of 19 States;
--Increase support of national dissemination of evidence-based
programs; and
--Create an Arthritis Management Network that would fund up to three
(3) projects to develop and evaluate interventions that can
better understand the impact of comorbidities and improve
existing self-management and physical activity among adults
with arthritis.
national institutes of health
As previously stated, there is no cure for arthritis, and for some
forms of the disease, no disease-modifying therapeutics. Even for
autoimmune forms of the disease like RA, biologic medications--which
have revolutionized treatment by halting the progress of disease in
many patients--have severe side effects. There is also no ``gold
standard'' diagnostic for many forms of arthritis like RA and juvenile
arthritis, and therefore it can take a long time to diagnose these
diseases. It is not uncommon for children to go months without an
official diagnosis, which can delay the start of critical treatment.
Research is the key to identifying better diagnostics and better
treatments, so that people have access to treatments early in their
disease, ensuring a higher quality of life and better health outcomes.
The National Institute of Arthritis and Musculoskeletal and Skin
Diseases (NIAMS) is one of the primary NIH Institutes that supports
arthritis research. Unfortunately, funding for NIAMS has not kept pace
with inflation over the last several fiscal years. In fact, funding for
the NIAMS research agenda has be cut significantly. As a percentage of
the total appropriation for all NIH centers and institutes, NIAMS's
share of funding declined to 1.55 percent in the last fiscal year from
a high of 1.73 percent in fiscal year 2010. Perhaps more urgently, the
funding level for NIAMS does not adequately reflect the disease burden
within its purview. Osteoarthritis alone impacts tens of millions of
people, costing hundreds of millions of dollars annually, and has no
disease-modifying therapeutic. We urge you to address this funding
disparity by appropriating $673 million for NIAMS in fiscal year 2020.
We thank the Subcommittee for its commitment to the health and
wellbeing of all Americans. As you write the fiscal year 2020 Labor-
HHS-Education appropriations bill, we hope you will fund the CDC
Arthritis Program at $16 million and provide $673 million for NIAMS to
continue investments in improving the lives of people with arthritis.
Please contact Vincent Pacileo, Director of Federal Affairs, at
[email protected], with any questions.
______
Prepared Statement of the Association for Professionals in Infection
Control and Epidemiology and the Society for Healthcare Epidemiology of
America
The Association for Professionals in Infection Control and
Epidemiology (APIC) and Society for Healthcare Epidemiology of America
(SHEA) thank you for this opportunity to submit testimony on Federal
efforts to detect dangerous infectious diseases, protect the American
public from preventable healthcare-associated infections (HAIs) and
address the rapidly growing threat of antibiotic resistance (AR). We
ask that you support the following programs: within the Centers for
Disease Control and Prevention (CDC) National Center for Emerging and
Zoonotic Infectious Diseases: $465.8 million for Core Infectious
Diseases including $200 million for the Antibiotic Resistance Solutions
Initiative, $22.75 million for the National Healthcare Safety Network
(NHSN), and $32.5 million for the Advanced Molecular Detection (AMD)
Initiative. Additionally, we request $36 million for HAI research
activity conducted by the Agency for Healthcare Research and Quality
(AHRQ) and $5.8 billion for the National Institutes of Health (NIH)/
National Institute of Allergy and Infectious Diseases (NIAID).
HAIs are among the leading cause of preventable harm and death in
the United States. One in 31 hospitalized patients has at least one HAI
at any given time. Annually that means 687,000 patients will contract a
HAI with nearly 72,000 dying as a result. An increasing number of these
infections are untreatable due to resistance to our current arsenal of
antibiotics. Without immediate intervention, antibiotic resistance can
make minor infections become life-threatening and put our ability to
perform surgical procedures at risk. The CDC conservatively estimates
that in the United States over two million illnesses and about 23,000
deaths are caused by AR infections. According to a 2016 report from the
Review on Antimicrobial Resistance, if actions are not taken to combat
AR, antibiotics could be rendered ineffective resulting in the deaths
of 10 million people annually worldwide by the year 2050.
centers for disease control and prevention
SHEA and APIC request $465.8 million for Core Infectious Diseases
for fiscal year 2020, which includes funding for HAI prevention, AR
prevention, and the Emerging Infections Program (EIP). Through this
funding the EIP can continue to work with State health departments and
their academic partners to quickly translate surveillance and research
activities into policy and public health practice. Core activities of
the EIP Network include:
--Active Bacterial Core surveillance (ABCs): Active population-based
laboratory surveillance for invasive bacterial disease.
--FoodNet: Active population-based laboratory surveillance to monitor
the incidence of foodborne diseases.
--Influenza activities: Active population-based surveillance for
laboratory confirmed influenza-related hospitalizations.
--Healthcare-Associated Infections--Community Interface (HAIC)
projects: Active population-based surveillance for HAIs.
We urge you to support $200 million for the Antibiotic Resistance
Solutions Initiative. The AR Solutions Initiative has distributed a
large portion of its funds to all 50 State health departments, six
large city health departments, and Puerto Rico. By working with State
and local health departments the AR Solutions Initiative is protecting
life-saving antibiotics and the future of medical innovation from the
threat of antibiotic resistance. The program also supports the
Antibiotic Resistance Lab Network, which provides the infrastructure
and lab capacity for seven regional labs to detect resistant organisms.
Through these labs, CDC is able to identify pathogens which are
resistant to all or most antibiotics. For instance, in 2017 lab tests
uncovered unusual resistance more than 200 times in ``nightmare
bacteria'' alone.
We urge you to support $22.75 million for CDC's National Healthcare
Safety Network (NHSN). NHSN is the vehicle CDC uses to track central
line-associated bloodstream infections (CLABSI), catheter-associated
urinary tract infections (CAUTI), surgical site infections (SSI),
methicillin-resistant Staphylococcus aureus (MRSA), and Clostridioides
difficile infections. This funding enables the CDC to provide technical
support to more than 22,000 healthcare facilities, which represents
65,000 users across the continuum of care. These funds will allow CDC
to continue to provide data for national HAI elimination, support
assessment of antibiotic prescribing, and enhance prevention efforts by
identifying healthcare facilities for improvement. This support will
also provide NHSN infrastructure, critical user support, and provide
innovative HAI prevention approaches.
We urge your continued support of $32.5 million for the Advanced
Molecular Detection (AMD) Initiative in bioinformatics and genomics,
which allows CDC to more quickly determine where emerging diseases come
from, whether microbes are resistant, and how microbes are moving
through a population. This initiative is critical because it
strengthens CDC's epidemiologic and laboratory expertise to effectively
guide public health action.
agency for healthcare research and quality
We request your support of $36 million for AHRQ's HAI research
activity. This funding supports projects to advance the science of HAI
prevention, develop more effective approaches for reducing HAIs, and
help clinicians apply proven methods to prevent HAIs on the front lines
of care. The projects funded by AHRQ's HAI Program accelerate the
implementation of evidence-based methods to reduce HAIs in acute care
hospitals as well as ambulatory and long-term care settings. Distinct
from the research funded through NIH, AHRQ funds critical research
focused on improving the safety and quality of the U.S. healthcare
system.
national institutes of health/national institute of allergy and
infectious diseases
SHEA and APIC support $5.8 billion for the National Institute of
Allergy and Infectious Diseases (NIAID) within NIH. NIAID plays a key
role in advancing research to understand how microbes develop
resistance and to identify novel ways to combat them; translation of
laboratory findings into potential treatments, vaccines, and new
diagnostic tests; clinical validation of diagnostic tests; and clinical
trials to evaluate vaccines as well as new and existing therapies
against drug-resistant microbes.
We thank you for the opportunity to submit testimony and greatly
appreciate your leadership in the effort to eliminate preventable HAIs,
combat antibiotic resistance and improve patient safety and outcomes.
About APIC.--APIC's mission is dedicated to creating a safer world
through prevention of infection. The association's nearly 16,000
members direct and maintain infection prevention programs that prevent
suffering, save lives and contribute to cost savings for hospitals and
other healthcare facilities. APIC advances its mission through patient
safety, implementation science, competencies and certification,
advocacy, and data standardization. Visit APIC online at www.apic.org.
Follow APIC on Twitter: http://twitter.com/apic and Facebook:
www.facebook.com/APICInfectionPreventionandYou. For information on what
patients and families can do, visit APIC's Infection Prevention and You
website at www.apic.org/infectionpreventionandyou.
About SHEA.--SHEA is a professional society representing more than
2,000 physicians and other healthcare professionals globally that have
expertise in and passion for healthcare epidemiology, infection
prevention, and antibiotic stewardship. SHEA's mission is to prevent
and control healthcare- associated infections and advance the field of
healthcare epidemiology and promote strong antibiotic stewardship
programs. The society promotes science and research, develops expert
guidelines and guidance for healthcare workers, provides high-quality
education, encourages transparency in public reporting related to HAIs,
works to ensure a safe healthcare environment, and facilitates the
exchange of knowledge in all healthcare settings. SHEA upholds the
value and critical contributions of healthcare epidemiology to
improving patient care and healthcare worker safety. Visit SHEA online
at www.shea- online.org, www.facebook.com/SHEApreventingHAIs and
@SHEA_Epi.
[This statement was submitted by Lisa Tomlinson, Vice President,
Government Affairs and Practice Guidance, APIC and Lynne Jones Batshon,
Director, Policy and Practice, SHEA.]
______
Prepared Statement of the Association for Psychological Science
aps recommendations for fiscal year 2020 appropriations
_______________________________________________________________________
--As a member of the Ad Hoc Group for Medical Research, APS
recommends at least $41.6 billion for NIH in fiscal year 2020.
This would be a $2.5 billion increase over NIH's program level
funding in fiscal year 2019. This funding level would allow for
meaningful growth above inflation in the base budget that would
expand NIH's capacity to support promising science in all
disciplines beyond the directed funding included in the 21st
Century Cures Act. 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.
--APS asks the Committee to continue to engage with NIH regarding
NIH's proposed redefinition of clinical trials to include basic
research. The Committee included very direct report language in
the fiscal year 2018 Omnibus directing NIH to ``delay
enforcement of the new policy'' and ``consult with the basic
research community to determine reporting standards best suited
to this kind of research.'' However, NIH is choosing to ignore
the intent of the Committee, and is continuing to move forward
with a new policy that will reclassify a significant amount of
basic research as a clinical trial and will subject this
research to the added regulations and cost of clinical trials.
APS is working on a compromise that would use NIH's new funding
stream, basic science experimental studies involving humans
(BESH), but will not require applications to go through
clinicaltrials.gov or be called a clinical trial.
--Behavior is involved in the development, treatment, or prevention
of virtually every public health issue facing this Nation,
including opioid addiction, heart disease, cancer, diabetes,
mental illness, AIDS, violence, traumatic brain injury, and
alcoholism. APS asks Congress to urge NIH to establish an
advisory panel to review and recommend programs and structures
that will result in a stronger basic, applied, and clinical
behavioral science research and training enterprise at NIH in
recognition of the central role of behavior in health.
--APS asks the Committee to encourage the National Institute of
Mental Health to diversify its research portfolio to establish
a better balance between neuroscience and basic and applied
behavioral research to increase the development of more
effective treatments for reducing the urgent public health and
economic burdens resulting from the prevalence of these
conditions.
--APS urges the Committee to monitor and ensure that NIH is complying
with Federal statute (Title 42 of the US Code, Subchapter III;
Part B, Subsection 284A) that all NIH Directors Advisory
Councils have at least two representatives from the fields of
public health and the behavioral or social sciences.
_______________________________________________________________________
Mr. Chairman and Members of the Subcommittee, thank you for the
opportunity to provide testimony as you consider funding priorities for
fiscal year 2020. I am Sarah Brookhart, Executive Director of the
Association for Psychological Science (APS).
APS is a nonprofit organization dedicated to the advancement of
scientific psychology nationally and internationally. APS's 35,000
members are scientists and educators at the Nation's universities and
colleges, conducting NIH-supported basic, applied and clinical
research. They look at such things as the connections between emotion,
stress, and biology and the impact of stress on health; they study how
children grow, learn, and develop; they use brain imaging to explore
thinking and memory and other aspects of cognition; they research ways
to manage debilitating chronic conditions such as diabetes and
arthritis as well as depression and other mental disorders; they
examine how genes and the environment influence behavioral traits such
as aggression and anxiety; and they address the behavioral aspects of
smoking and substance abuse.
recognizing the leadership of the subcommittee
Mr. Chairman, APS recognizes and appreciates your leadership and
the leadership of this Subcommittee in supporting public health
research. We applaud the Committee's commitment to improving health
through science and to allocating increased funding to these programs
during periods of fiscal austerity so that the pace of scientific
discovery needed to address the Nation's health needs remain vital. We
are particularly grateful for your leadership in securing a $2 billion
increase for the NIH in fiscal year 2019. While many of these funds are
set aside for specific projects, we appreciate your vision in ensuring
that every Institute and Center has growth above fiscal year 2018
levels. This will help expand the agency's capacity to make progress
across the full spectrum of scientific opportunity and increase funding
available for investigator initiated scientific research. We do,
however, share the concern of many groups that the increasing trend to
earmark NIH funding is troublesome.
funding for the national institutes of health and policy issues
As previously noted, APS recommends an fiscal year 2020 funding
level of $41.6 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. Securing a reliable,
robust budget trajectory for NIH will be important in positioning the
agency--and the public which relies on it--to capitalize on the full
range of health research being conducted in the biomedical, behavioral,
social, and population-based sciences. The Administration's request of
$34.4 billion in fiscal year 2020, translating to approximately a $4.7
billion cut, is reckless and shortsighted. Cuts to NIH would affect
every American, including patients, their families, researchers, and
communities where NIH investment spurs economic growth. APS, and the
entire health research community, strongly oppose the Administration's
proposal.
In addition to funding priorities, APS is concerned about several
policy issues at the NIH.
Clinical Trials Definition: APS continues to be concerned that NIH
is moving forward with the implementation of a new definition of
clinical trials that encompasses significant amounts of basic research
with humans. This NIH action ignores over 3,500 comments in opposition
to this change, the opposition of 35 current and former members of NIH
advisory councils (as conveyed in a letter to Director Collins), and
concerns expressed by the Committee in its fiscal year 2018 Conference
report language. Basic research by definition is aimed at furthering
knowledge about underlying processes and conditions involved in a
particular phenomenon. Clinical trials are explicitly designed to test
the safety and effectiveness of treatment or prevention interventions
on health outcomes. The new definition of clinical trial encompasses
basic research studies which are not traditionally considered to be a
clinical trial by NIH or by the scientific community. In doing so, NIH
is subjecting entire areas of basic research to inappropriate and
unnecessary requirements that would add significantly to the cost and
time of each project and would also create a significant economic
burden for university and government review and training programs. To
help reverse this policy change, we urge the following fiscal year 2020
report language in the NIH Office of the Director:
Clinical Trials Policy.--The Committee continues to be concerned
that NIH is moving forward with the implementation of a new
definition of clinical trials that encompasses significant
amounts of basic research with humans. This NIH action
ignores over 3,500 comments in opposition to this change,
the disapproval of 35 current and former members of NIH
advisory councils, and concerns expressed by the Committee
in its fiscal year 2018 Conference report language.
Contrary to NIH claims, this action is not suggested or
required by the 21st Century Cures Act. While the Committee
supports efforts to increase transparency and improve
oversight of clinical trials, these policies are
unnecessary to meet those goals, given that viable and cost
effective alternatives exist for basic research with
humans. These policies subject basic research with humans
to unnecessary oversight, regulations, and requirements at
the Federal and institutional levels that are burdensome,
irrelevant, and costly for scientific research. The
Committee urges NIH to not classify basic research as
clinical trials and to work with basic human subjects
researchers to develop appropriate policies for NIH-funded
basic research.
Behavioral Science at NIH: The National Institute of Health (NIH)
mission is to ``seek fundamental knowledge about the nature and
behavior of living systems and the application of that knowledge to
enhance health, lengthen life, and reduce illness and disability.''
However, increasingly, the Association for Psychological Science has
concerns about the status of behavioral science at NIH; specifically,
the continued disparity between the central role of behavior in all
areas of health and the low level of support for basic and applied
behavioral science research and training. APS therefore requests that
the following language be included in the fiscal year 2020 Labor-HHS
Appropriations Report directing the Director of NIH to convene a
special advisory panel of behavioral scientists and other community
experts to complete an assessment providing recommendations on how to
better integrate and realize the benefits to overall health from
behavioral research at NIH:
Behavioral Research.--The Committee is concerned that the weak
NIH commitment to behavioral science research and training
is not consistent with the important connections between
behavior and health. Most of the leading public health
issues facing our Nation-including cancer, addiction, heart
disease, mental illness, diabetes, violence, and AIDS--are
rooted in individual and social behavior, yet behavioral
science is decentralized across NIH's institutes and the
Office of the Director limits guidance and authority to
manage and direct this important research. The Committee
therefore requests that the Director convene a special
advisory panel of behavioral scientists and other community
experts to complete an assessment providing recommendations
on how to better integrate and realize the benefits to
overall health from behavioral research at NIH. The
Committee requests that this assessment be finalized before
the end of fiscal year 2020 and be submitted to Congress.
Improving the Treatment of Mental Illness: APS continues to be
concerned about the inadequate recognition at NIH of the role of
behavior in health, as reflected in the absence of behavioral science
among the priorities at many institutes. Specifically, we share the
concern expressed by the National Institute of Mental Health (NIMH)
National Advisory Mental Health Council that over the past decade the
NIMH research portfolio has increasingly become focused on basic and
molecular neuroscience research at the expense of research focused on
finding ways to ease the burden of those currently suffering from
devastating mental conditions. In fact, in January 2018, the NIMH
Director noted that over the last 10 years, this policy shift has
resulted in a 50 percent decline in applications for applied and
translational science. This decline illustrates the signal NIMH has
sent to the research community that basic and molecular neuroscience
grants are the priority over applied behavioral science. APS believes
that the individual, social, and economic burdens of mental illness
will not begin to be alleviated until there is a more comprehensive
research approach. The NIMH mission to support research and training to
reduce the public health burden of mental illness has never been more
urgent; it is imperative that the Institute employ the full range of
scientific resources that are available in pursuit of its mission.
Therefore, APS urges the Committee to include the following language
instructing NIMH to diversify its research portfolio to better balance
between neuroscience and basic and applied behavioral research to
increase the development of more effective treatments for people who
need them now:
Improving the Treatment of Mental Illness.--The Committee
continues to be concerned that over the past decade the
NIMH research portfolio has increasingly become focused on
basic neuroscience research at the expense of a more
balanced portfolio that would also fund basic and applied
behavioral and psychosocial research focused on finding
ways to meet the public health mission to ease the burden
of those affected today. This NIMH policy shift has led to
a 50 percent decline in applied and translational
applications in this 10 year period as NIMH has signaled to
the research community a prioritization of basic
neuroscience research. The Committee urges NIMH to take
steps to diversify its research portfolio to better balance
between neuroscience and basic and applied behavioral and
psychosocial research and requests a report on actions
taken and planned to meet this goal.
NIH Advisory Committees: Congress recognized the important role
that behavioral and social science plays in addressing the Nation's
health needs by including a requirement in Section 284 of Title 42,
Subchapter III of the US Code that membership of each NIH Advisory
Committee should include ``not less than two individuals who are
leaders in the fields of public health and the behavioral or social
sciences'' relevant to the activities of the national research
institute for which the advisory council is established. While there
are some Institutes, such as the National Institute of Mental Health,
that work diligently to adhere to this Federal requirement, other
institutes are not in compliance. Therefore, APS requests the following
language be included in the fiscal year 2020 Labor-HHS report to
address this issue:
Directors Advisory Committees.--The Committee is concerned that
despite the legal requirement of Federal statute (Title 42
of the US Code, Subchapter III; Part B, Subsection 284A)
that all NIH Directors Advisory Councils have at least two
representatives from the fields of public health and the
behavioral or social sciences, recent reviews of the
membership of Institute Directors Advisory Councils reveal
that not all institutes are in compliance with this
requirement. The Committee urges compliance with this
statute and requests a report on the fields of public
health and behavioral and social sciences that are
represented on each advisory committee and measures planned
and completed to comply with the requirements of this
statute.
summary and conclusion
Mr. Chairman, again we wish to thank the Subcommittee for its past
leadership. Significant progress has been made in meeting the many
public health concerns facing this Nation due to your efforts. Mr.
Chairman, if this country is to continue to see advances in improving
the health and wellbeing of our Nation, adequate funding for the public
health service is paramount. Within that, we believe that reducing
barriers to research and training in behavioral science is warranted by
the central role of behavior in many of our most pressing health
problems and by the enormous potential of psychological science and
other behavioral disciplines to reduce the suffering experienced by the
millions of people who are suffering with behavior-based conditions.
APS shares your commitment to addressing the health needs of the Nation
and appreciates the opportunity to provide this testimony.
[This statement was submitted by Sarah Brookhart, Executive
Director, Association for Psychological Science.]
______
Prepared Statement of the Association for Research in Vision and
Ophthalmology
executive summary
The Association for Research in Vision and Ophthalmology (ARVO), on
behalf of its nearly 12,000 members--half in the U.S.--thanks Congress,
particularly the House and Senate Appropriations Subcommittees on
Labor, Health and Human Services, and Education (LHHS), for strong
bipartisan support for the National Institutes of Health (NIH) funding
increases from fiscal year 2016 through fiscal year 2019. ARVO
appreciates the $9 billion increase that has helped the agency regain
ground lost after years of effectively flat budgets. For fiscal year
2020, ARVO urges Congress to appropriate at least $41.6 billion to the
NIH, a $2.5 billion or 6.4 percent increase over the fiscal year 2019
funding level. This increase would allow for meaningful growth above
inflation in the base budget to support promising science across all
Institutes and Centers (I/Cs). Funding at this level would also ensure
that dollars from the Innovation Account, established through the 21st
Century Cures Act, would supplement NIH's base budget, as intended,
through dedicated funding for specific programs.
For fiscal year 2020, ARVO also encourages Congress to appropriate
at least $850 million for the National Eye Institute (NEI), which is a
$53 million or 6.4 percent increase over enacted fiscal year 2019. ARVO
is concerned that the NIH and NEI budgets have not kept pace with
biomedical inflation. For example, despite the total fiscal year 2016-
2019 funding increases of $120 million, NEI's fiscal year 2019 enacted
budget of $797 million is just 14 percent greater than the pre-
sequester fiscal year 2012 budget of $702 million. When this amount is
averaged over the past seven fiscal years, the 2 percent annual growth
rate is less than the average annual biomedical inflation rate of 2.8
percent, thereby eroding the purchasing power and impact of these
funds.
The NEI, which celebrated its 50th anniversary in 2018, is the
world leader in sight-saving and vision-restoring research. We
encourage Congress to ensure robust NEI funding that can help address
the challenges of The Decade of Vision 2010-2020--as recognized by
Congress in S. Res. 209 in 2009--which includes an aging population,
disproportionate risk/incidence of eye disease in fast-growing minority
populations, and the visual impact of numerous chronic diseases and
their therapies.
Vision loss is costly to Americans. Investing in vision research to
improve eye health can help to reduce healthcare costs and increase
quality of life. The NEI's breakthrough research is a cost-effective
investment that leads to treatments and therapies that delay, save and
prevent healthcare expenditures. The NEI has been a leader in genetics/
genomics research and regenerative medicine. For example:
Genetics/Genomics:
--NEI's Glaucoma Genetics Collaboration Heritable Overall Operational
Database (NEIGHBORHOOD) Consortium has identified 133 genetic
traits that predict with 75 percent accuracy a person's risk
for developing glaucoma related to elevated intraocular
pressure (IOP). Among the 133 traits, 68 had not been
previously linked to IOP or the relate cellular processes, such
as lipid metabolism and mitochondrial function, that contribute
to IOP. By understanding these cellular processes that can
increase IOP and cause optic nerve damage, clinicians may be
able to make an earlier diagnosis and researchers may be able
to develop therapies to potentially halt disease progression.
--NEI-funded research has also led to the discovery of genetic
defects underlying dozens of rare eye disease, including the
discovery of RPE65. When mutated, this gene causes an inherited
form of blindness called Leber congenital amaurosis (LCA). In
2017, based on NEI's initial efforts, the Food and Drug
Administration (FDA) approved a gene therapy that cures this
condition. These gene-based discoveries are forming the basis
for new therapies that treat or prevent disease deemed
untreatable until now.
Regenerative Medicine:
--In 2013, NEI launched its Audacious Goals Initiative (AGI) focused
on regenerative medicine with the goal of restoring vision in
blind patients that had lost portions of their retina. After
initially asking a broad constituency of scientists within the
vision research community to consider what could be done if
researchers employed this new era of biology, the AGI currently
funds major research consortia that are developing innovative
ways to visualize the retina system. Researchers can now look
at individual nerve cells in the eyes of patients in an
examination room and directly observe whether new treatments
are successful. Another consortium is identifying biological
factors that allow damaged nerve cells of the retina to
regenerate. The AGI is gathering considerable momentum with
current proposals to develop disease models that may accelerate
clinical trials for therapies within the next decade.
--NEI plans a first-in-human clinical trial that would test a stem
cell-based therapy using a patient's own cells, so called
induced pluripotent stem cells (iPSC), to treat the ``dry''
form of Age-related Macular Degeneration (AMD), the leading
cause of vision loss among people age 65 and older. In this
trial, a patient's own blood-making cells, called CD34+ cells,
are converted to iPSCs and then programmed to become retinal
pigment epithelial (RPE) cells. The RPE cells nurture the
photoreceptors cells, which are necessary for vision and which
die in AMD. The therapy replaces RPE cells, which have died due
to AMD, with new, fully functioning, iPSC-derived RPE, thereby
rescuing remaining photoreceptor cells and ultimately vision.
the nation's investment in the nei results in new therapies to treat
major eye diseases
Since President Lyndon Johnson signed legislation creating the NEI
in 1968, the Federal commitment has resulted in treatments and
therapies for devastating diseases that cause vision loss. For example:
--AMD: The treatment of the ``wet'' form of AMD has made great
strides resulting from use of Anti-Vascular Endothelial Growth
Factor (VEGF) therapies. Last year, the NEI launched the AMD
Ryan Initiative Study (ARIS), a prospective international study
of patients that uses the latest advances in retinal imaging to
identify biomarkers of the disease and targets for early
therapeutic interventions.
--Diabetic Retinopathy: In the 1960s, about half of patients with
diabetic retinopathy were blind within 5 years of diagnosis.
NEI-sponsored clinical trials--starting in the early 1970s with
the Diabetic Retinopathy Study and most recently with the
Diabetic Retinopathy Clinical Research Network--have reduced
the incidence of severe vision loss from diabetic retinopathy
by 90 percent.
--Glaucoma: Eye pressure (IOP) appears to be the primary determining
factor in the development of glaucoma for many patients. NEI
research into primary open-angle glaucoma (POAG), the most
common form of the disease, has resulted in two FDA-approved
drug therapies in addition to those that have already emerged
from NEI research. Targeting the eye's trabecular meshwork,
which is a part of the eye responsible for reducing eye
pressure by regulating fluid outflow from within the eye, the
new generation of therapies reflects an expanding menu of
drugs, potentially in combination with therapy, that lower IOP
and better meet the needs of patients who do not respond to
existing drugs or for whom older therapies have lost efficacy.
--Optical Coherence Tomography (OCT): Critical to the diagnosis and
monitoring of treatments for the aforementioned eye diseases is
an imaging technology called Optical Coherence Tomography
(OCT). This non-invasive, high-resolution imaging technology
displays a three-dimensional cross-sectional view of the layers
of the retina. Developed over 25 years with $423 million in NIH
and National Science Foundation (NSF) funding, OCT enables more
personalized eye care and more efficient use of healthcare
dollars. A December 2017 American Journal of Ophthalmology
article reported that OCT saved Medicare $9 billion and
patients $2.2 billion in co-pays by reducing unnecessary
injections. As the technology continues to be applied to new
medical conditions, such as Alzheimer's disease and Parkinson's
disease, it supports a private commercial market of $1 billion
and more than 16,000 high-paying jobs. These numbers suggest
that in just this single area of research, the U.S. Government
saw a 2,100 percent return on investment. https://www.ajo.com/
article/S0002-9394(17)30419-1/fulltext
The next breakthroughs in technologies or treatments to save sight
may be around the corner. Increased funding for the NIH and NEI in
fiscal year 2020 may expedite the discovery of these technologies and
treatments that will impact the lives of those facing vision loss and
their families.
NEI's fiscal year 2019 enacted budget of $797 million is just 0.55
percent of the $145 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 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 $2.40 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. https://
www.preventblindness.org/cost-vision-problems
In a May 2016 JAMA Ophthalmology article, NEI-funded researchers
reported that the number of people with legal blindness will increase
by 21 percent each decade to 2 million by 2050, while best-corrected
visual impairment will grow by 25 percent each decade, doubling to 6.95
million people--with the greatest burden affecting those 80 years or
older. http://jamanetwork.com/journals/jamaophthalmology/article-
abstract/2523780?resultClick=1
In an August 2016 JAMA Ophthalmology article, the Alliance for Eye
and Vision Research (AEVR, ARVO's educational foundation) reported that
most 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. http://jamanetwork.com/journals/
jamaophthalmology/article-abstract/2540516?resultClick=1
NEI funding is also crucial to young scientists' research. Flat
funding and cuts to NIH funding will impact their ability to move their
careers and research forward. Recognizing the potential of young
scientists, ARVO has focused efforts in recent years to support the
next generation of scientists through travel grants to our annual
meeting and awards to support research. Additionally, ARVO has created
a Science Communication Training Fellowship to teach young scientists
how to communicate about their science research to various audiences.
It is crucial that these young scientists continue receiving support
for their research through NEI grants and funding if they are to
prevail as the next generation of leaders in vision research.
Please remember that investing in vision health is an investment in
overall health. NEI's breakthrough research leads to treatments and
therapies that may delay, save, and prevent healthcare expenditures. It
can also increase productivity and improve the quality of life, as
vision loss is associated with increased depression and accelerated
mortality.
To support this important work, on behalf of the eye and vision
research community, ARVO asks Congress to maintain the momentum of
research that is vital to vision health, as well as overall health and
quality of life and requests fiscal year 2020 NIH funding of at least
$41.6 billion and NEI funding of $850 million.
about arvo
ARVO's mission is to advance research worldwide into understanding
the visual system and into preventing, treating and curing its
disorders. Our members include nearly 12,000 researchers--with about
half in the U.S.--representing more 80 countries. This is done through
meetings, education, partnerships, fellowships and programs that drive
collaboration, innovation and the advancement of eye and vision science
with a goal of saving sight. Learn more at www.ARVO.org
[This statement was submitted by Iris M. Rush, CAE, Executive
Director,
Association for Research in Vision and Ophthalmology.]
______
Prepared Statement of the Association of American Medical Colleges
The Association of American Medical Colleges (AAMC) is a not-for-
profit association dedicated to transforming healthcare through
innovative medical education, cutting-edge patient care, and
groundbreaking medical research. Its members comprise all 154
accredited U.S. and 17 accredited Canadian medical schools; nearly 400
major teaching hospitals and health systems, including 51 Department of
Veterans Affairs medical centers; and more than 80 academic societies.
Through these institutions and organizations, the AAMC serves the
leaders of America's medical schools and teaching hospitals and their
173,000 full-time faculty members, 89,000 medical students, 129,000
resident physicians, and more than 60,000 graduate students and
postdoctoral researchers in the biomedical sciences.
In fiscal year 2020, the AAMC requests the following for Federal
priorities essential in assisting medical schools and teaching
hospitals to fulfill their missions of education, research, and patient
care: at least $41.6 billion for the National Institutes of Health
(NIH), including funds provided through the 21st Century Cures Act for
targeted initiatives; $460 million in budget authority for the Agency
for Healthcare Research and Quality (AHRQ); $690 million for the Title
VII health professions and Title VIII nursing workforce development
programs, and $400 million for the Children's Hospitals Graduate
Medical Education (CHGME) program, at the Health Resources and Services
Administration (HRSA)'s Bureau of Health Workforce; and continued
support for student aid through the Department of Education. The AAMC
appreciates the Subcommittee's longstanding, bipartisan efforts to
strengthen these programs.
We recognize that the impractical fiscal year 2020 budget caps
imposed by the Budget Control Act of 2011 hold the potential to
undermine necessary investment in the full range of critical Federal
priorities. The AAMC is among the hundreds of organizations urging a
bipartisan budget deal to increase the caps for nondefense
discretionary spending and advocating a significant increase in the
Subcommittee's 302(b) allocation in fiscal year 2020. We urge Congress
to take these steps to enable full investment in the priorities
outlined below.
National Institutes of Health. Congress's longstanding bipartisan
support for medical research has contributed greatly to improving the
health and well-being of all Americans. The foundation of scientific
knowledge built through NIH-funded research drives medical innovation
that improves health through new and better diagnostics, improved
prevention strategies, and more effective treatments. Over half of the
life-saving research supported by the NIH takes place at America's
medical schools and teaching hospitals, where scientists, clinicians,
fellows, residents, medical students, and trainees work side-by-side to
improve the lives of Americans through research. This partnership is a
unique and highly-productive relationship, one that lays the foundation
for improved health and quality of life and strengthens the Nation's
long-term economy.
The AAMC thanks Congress for the bipartisan support that resulted
in the inclusion of $39.1 billion in the fiscal year 2019 omnibus
spending bill for medical research conducted and supported by the NIH,
which builds off meaningful increases for NIH since fiscal year 2016.
Additionally, the AAMC thanks the Subcommittee for recognizing the
importance of continuing Federal support for facilities and
administrative expenses and retaining the salary cap at Executive Level
II of the Federal pay scale. The AAMC is concerned that proposals to
undermine salary support would, as described in NIH's fiscal year 2020
congressional justification, ``limit the number of applicants with
sufficient resources to participate in federally-funded research,'' and
ultimately weaken research nationwide. This consequence would directly
counter the Subcommittee's efforts over the years to strengthen the
Nation's research enterprise.
In fiscal year 2020, the AAMC supports the Ad Hoc Group for Medical
Research recommendation that Congress provide at least $41.6 billion
for NIH, including funds provided through the 21st Century Cures Act
for targeted initiatives. This funding level would continue the
momentum of recent years by enabling meaningful base budget growth over
biomedical inflation to help ensure stability in the Nation's research
capacity over the long term. Securing a reliable, robust budget
trajectory for NIH is key in positioning the agency--and the patients
who rely on it--to capitalize on the full range of research in the
biomedical, behavioral, social, and population-based sciences.
Scientific discoveries rely on support from Congress. We must
continue the current trajectory if we are to strengthen our Nation's
research capacity and solidify our global leadership in medical
research, ensure a biomedical research workforce that reflects the
racial and gender diversity of our citizenry, and inspire a passion for
science in current and future generations of researchers.
Agency for Healthcare Research and Quality. Complementing the
medical research supported by NIH, AHRQ sponsors health services
research designed to improve the quality of healthcare, decrease
healthcare costs, and provide access to essential healthcare services
by translating research into measurable improvements in the healthcare
system. As the only Federal agency with the sole purpose of generating
evidence to make healthcare safer; higher quality; and more accessible,
equitable, and affordable, AHRQ also works to ensure such evidence is
available across the continuum of healthcare stakeholders, from
patients to payers to providers. The AAMC joins the Friends of AHRQ in
recommending $460 million in budget authority for AHRQ in fiscal year
2020.
Health Professions Funding. HRSA's Title VII health professions and
Title VIII nursing workforce development programs allow grantees to
test educational innovations, respond to changing delivery systems and
models of care, and address timely topics in their communities. By
assessing community needs and emphasizing interprofessional education
and training, Title VII and VIII programs bring together cross-
disciplinary knowledge and skills to provide effective, efficient and
coordinated care. Through loans and scholarships to students, and
grants and contracts to academic institutions and non-profits, these
programs fill the gaps in the supply of health professionals not met by
traditional market forces. The full spectrum of Title VII programs,
from workforce diversity programs to geriatric programs is essential to
prepare medical professionals to adapt to the changing needs of the
Nation's aging and diverse population. Studies demonstrate that the
programs graduate more minority and disadvantaged students and prepare
providers that are more likely to serve in Community Health Centers and
the NHSC. The programs also support faculty development, curriculum
development, and continuing education opportunities. These are all
important components to ensure faculty and providers are equipped to
meet the Nation's changing needs and train the next generation of
health professionals. The AAMC joins the Health Professions and Nursing
Education Coalition (HPNEC) in recommending $690 million for these
important workforce programs in fiscal year 2020.
The AAMC is grateful for the House of Representatives providing
$680 million for Title VII and Title VIII programs, and an additional
$55 million for the new Loan Repayment Program for Substance Use
Disorder Treatment Work, the Mental and substance Use Disorder
Workforce Training Demonstration, and Nurse Practitioner Optional
Fellowship Program. These programs are essential to ensuring we have a
trained health workforce to treat patients who are affected by
substance use disorder. While we support the inclusion of these
programs into Titles VII and VIII, it is imperative that they are an
expansion of Titles VII and VIII and are not funded at the expense of
current programs.
In addition to funding for Title VII and Title VIII, HRSA's Bureau
of Health Workforce also supports the Medical Student Education (MSE),
Teaching Health Center Graduate Medical Education (THCGME), and
Children's Hospitals Graduate Medical Education (CHGME) programs. We
are grateful for the $40 million provided by the House of
Representatives for MSE grants, which incentives medical students to
enter primary care in rural and medically underserved communities.
Additionally, we appreciate the mandatory appropriations provided under
the Bipartisan Budget Act of 2018 for THCs in fiscal year 2018 and
fiscal year 2019 to support new and expanded primary medical residency
programs in community-based ambulatory patient care settings. Further,
we urge Congress to fund THCs in fiscal year 2020 and beyond without
cutting mandatory or discretionary support for other Federal physician
training programs. The CHGME program provides critical Federal graduate
medical education support for children's hospitals to prepare the
future primary care and specialty care workforce for our Nation's
children. We support $400 million for the CHGME program in fiscal year
2020.
The AAMC appreciates the funding provided under the Bipartisan
Budget Act of 2018 for NHSC, and supports $475 million in total funding
for the program in fiscal year 2020. This $60 million (15 percent)
increase is the first stage of a 5-year systematic doubling of the NHSC
to meet the needs of underserved communities. As the Nation faces
multiple health professional shortages, sustained investments in
workforce programs are necessary to help care for our Nation's most
vulnerable populations. Recognizing that mandatory funding may be
provided through other mechanisms, the appropriations committees retain
responsibility for funding the administrative functions of the NHSC and
for avoiding budgetary lapses in future years. We look forward to
working with Congress to help ensure a long-term investment in the NHSC
without sacrificing other Federal health professions training support.
Additional Programs. The AAMC supports at least $474 million for
the Hospital Preparedness Program, in addition to $40 million to
continue the regional preparedness program created to address Ebola and
other special pathogens, including funding for regional treatment
centers, frontline providers, and the National Ebola Training and
Education Center (NETEC), expiring in fiscal year 2019. The AAMC
appreciates that the president's fiscal year 2020 budget proposal
requests $4 million to support grants to medical schools and teaching
hospitals to develop curricular resources on medication-assisted
treatment. The AAMC supports the programs authorized under Sections
3202 and 7101 of the SUPPORT Act (Public Law 115-271) to enhance
medical education, and we encourage their full funding.
The AAMC urges the Subcommittee to sustain student loan and
forgiveness programs for graduate and professional students at the
Department of Education, including GradPLUS loans and Public Service
Loan Forgiveness (PSLF). The average graduating debt of medical
students is currently $200,000, and total repayment can range from
$365,000 to $440,000.
Once again, the AAMC appreciates the opportunity to submit this
statement for the record and looks forward to working with the
Subcommittee as it prepares its fiscal year 2020 spending bill.
______
Prepared Statement of the Association of Farmworker
Opportunity Programs
Chairman Blunt and Ranking Minority Member Murray:
Thank you for the opportunity to present to you and your
subcommittee the testimony of the Association of Farmworker Opportunity
Programs (AFOP) in support of the Nation's more than 50-year commitment
to providing eligible agricultural workers the opportunity to achieve
the American Dream for themselves and their families. As you begin work
on your fiscal year 2020 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 fully funding
them in the coming fiscal year: National Farmworker Jobs Program
(NFJP), United States Department of Labor (DOL) Employment and Training
Administration ($96,211,000); and Susan Harwood Training Grants, DOL
Occupational Safety and Health Administration ($10,537,000). Not only
do these programs maximize the Federal Government's investment in them,
they also generate for employers the qualified and healthy workers
essential to their growth. These programs also dramatically change
peoples' lives for the better, often in rural areas, allowing them to
enjoy economic success and participate more fully in our great Nation.
Thank you for supporting these very effective programs and the
excellent results they bring for society's most vulnerable.
national farmworker jobs program
NFJP is the bedrock of the Nation's commitment to helping
agricultural workers upgrade their skills in and outside agriculture,
providing employers with what they increasingly say they need:
hardworking, committed, well-trained, skilled workers. Administered by
DOL, NFJP provides funding through a competitive grant process to 52
community-based organizations and public agencies nationwide that
assist workers and their families to attain greater economic stability.
One of DOL's most successful employment training programs, NFJP helps
agricultural workers acquire the new skills they need to start careers
that offer higher wages and a more stable employment outlook. In
addition to employment and training services, the program provides
supportive services that help agricultural workers retain and stabilize
their current agriculture jobs, as well as enable them to participate
in up-training and enter new careers. NFJP housing assistance helps
meet a critical need for the availability and quality of agricultural
worker housing, and supports better economic outcomes for workers and
their families. NFJP also facilitates the coordination of services
through the American Job Center network for agricultural workers so
they may access other services of the public workforce system.
The agricultural workers who come to NFJP seek the 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 of DOL's goals.
In 2015 alone, NFJP service organizations provided more than 16,000
agricultural workers with services, according to DOL. Extrapolating,
these NFJP providers have served more than 160,000 agricultural workers
and their family members over the last 10 years. Funding this year at
the program's full authorized amount would allow NFJP to have a greater
impact training dependable, capable workers to take on the Nation's
most challenging jobs, such as the vast number of skilled workers a new
robust infrastructure rebuilding plan would generate. 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, like infrastructure
construction, and to establish themselves as productive and successful
members of society.
agricultural worker health & safety
AFOP also recommends continued appropriations for the DOL
Occupational Safety and Health Administration Susan Harwood grant
program, through which AFOP has augmented pesticide safety training
with curricula to help workers recognize and avoid the dangers of heat
stress so common in the fields. In supporting this funding, you can arm
the Nation's agricultural workers with the knowledge they need to keep
themselves safe on the job. The NFJP network of some 268 trainers in 28
States trains agricultural workers on how to protect against pesticide
poisoning and heat stress. Trainers then follow up with agricultural
workers to assess knowledge gained and retained, and changes in labor
practice. Since 1995, more than 445,000 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 this instruction, 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 $41.6
billion in fiscal year 2020. AIRI also urges the Subcommittee to reject
the harmful salary support and salary cap policies proposed in the
President's fiscal year 2020 budget request, as any changes to salary
policy would disproportionately impact independent research institutes.
First, we would like to deeply thank the Subcommittee for providing
another increase of $2 billion for NIH in fiscal year 2019 and securing
funding before the start of the fiscal year. The Subcommittee's support
of NIH is strongly demonstrated by these much-needed funds for life-
saving biomedical research. However, there is still much more to do.
NIH is tackling vast, interdisciplinary problems such as the opioid
crisis, the development of a universal flu vaccine, and Alzheimer's
disease; therefore, continued budget certainty is needed for the agency
to predictably fund new and ongoing grants and consider emerging
initiatives necessary to improving human health. To ensure cutting-edge
research at independent research institutes is not disrupted, AIRI
strongly supports a topline of $41.6 billion for NIH in fiscal year
2020.
AIRI is a national organization of more than 90 independent, non-
profit research institutes that perform basic and clinical research in
the biological and behavioral sciences. AIRI institutes vary in size,
with budgets ranging from a few million to hundreds of millions of
dollars. In addition, each AIRI member institution is governed by its
own independent Board of Directors, which allows our members to focus
on discovery-based research while remaining structurally nimble and
capable of adjusting their research programs to emerging areas of
inquiry. Investigators at independent research institutes consistently
exceed the success rates of the overall NIH grantee pool, and they
receive about 10 percent of NIH's peer-reviewed, competitively-awarded
extramural grants.
The partnership between NIH and America's scientists, research
institutions, universities, and medical schools is unique and highly-
productive, leveraging the full strength of our Nation's research
enterprise to foster discovery, improve our understanding of the
underlying cause of disease, and develop the next generation of medical
advancements that deliver more treatments and cures to patients.
Not only is NIH research essential to advancing health, it also
plays a key economic role in communities nationwide. In fiscal year
2018, NIH invested $28.05 billion, or almost 75 percent of its budget,
in the biomedical research community. This investment supported more
than 430,000 jobs nationwide and generated nearly $74 billion in
economic activity across the U.S.\1\ AIRI member institutes are
particularly relevant in this regard, as they are located across the
country, including in many smaller or less-populated States that do not
have major academic research institutions. In many of these regions,
independent research institutes are major employers and local economic
engines, and they exemplify the positive impact of investing in
research and science.
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\1\ NIH's funding information and economic impact data comes from
United for Medical Research's 2019 State-By-State Update, http://
www.unitedformedicalresearch.com/wp-content/uploads/2019/03/NIHs-Role-
in-Sustaining-the-US-Economy-2019-Update-FINAL.pdf.
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The NIH model for conducting biomedical research, which involves
supporting scientists at universities, medical centers, and independent
research institutes, provides an effective approach to making
fundamental discoveries in the laboratory that can be translated into
medical advances that save lives. AIRI member institutions are private,
stand-alone research centers that set their sights on the vast
frontiers of medical science. However, AIRI member institutes are
especially vulnerable to reductions in the NIH budget, as they do not
have other reliable sources of revenue to make up the shortfall.
AIRI opposes the harmful salary proposal in the President's fiscal
year 2020 budget that would reduce the salary cap to Executive Level V
from Executive Level II for extramural researchers and the proposal to
limit the total amount of investigator salary payable on a grant. These
policies would disproportionately affect early-career investigators and
independent research institutes and hinder AIRI members' ability to
recruit and retain talented researchers. The caps also negatively
affect the confidence of future researchers in the viability of a
career in biomedical sciences, severely harming the competitiveness and
capacity of the U.S. biomedical enterprise.
The Federal Government has an irreplaceable role in supporting
investigators and medical research. No other public, corporate, or
charitable entity is willing or able to provide the broad and sustained
funding for the cutting-edge research necessary to yield new
innovations and technologies of the future. NIH supports long-term
competitiveness for American workers, forming one of the key
foundations for U.S. industries like biotechnology, medical devices,
and pharmaceutical development, among others. Unfortunately, any
erosion to the national commitment to medical research could threaten
our ability to support a medical research enterprise that takes full
advantage of existing and emerging scientific opportunities.
AIRI member institutes' flexibility and research-only missions
provide an environment particularly conducive to creativity and
innovation. Independent research institutes possess a unique
versatility and culture that encourages them to share expertise,
information, and equipment across research institutions, as well as
neighboring universities. These collaborative activities help minimize
bureaucracy and increase efficiency, allowing for fruitful partnerships
in a variety of disciplines and industries. Also, unlike institutes of
higher education, AIRI member institutes focus primarily on scientific
inquiry and discovery, allowing them to respond quickly to the research
needs of the Nation.
AIRI deeply thanks the Subcommittee for its important work
dedicated to ensuring the health of the Nation, and we appreciate this
opportunity to urge the Subcommittee to continue the success of NIH by
providing $41.6 billion in fiscal year 2020 and reaffirm support for
NIH's current 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 2020 recommendations
_______________________________________________________________________
Health Resources and Services Administration
--$424 million for Title VII Health Professions Training Programs
--$45.21 million for HRSA's Minority Centers of Excellence (COE)
Program
--$47.95 million for HRSA's Health Careers Opportunity Program
(HCOP)
--$1.75 million for HRSA's Faculty Loan Repayment
--$63.39 million for HRSA's Scholarships for Disadvantaged Students
--$67 million for HRSA's Area Health Education Center (AHEC)
Program
National Institutes of Health
--$41.6 billion for the National Institutes of Health
--$336 million for the National Institute on Minority Health and
Health Disparities (NIMHD)
-- Improve NIMHD's administration of the Research Centers at
Minority Institution (RCMI) program to refocus it on
supporting minority institutions
-- Improve NIMHD's administration of the Research Endowment
Program to reverse the arbitrary limits placed on
participating institutions
Centers for Disease Control & Prevention
--$60 million for CDC's Racial & Ethnic Approaches to Community
Health (REACH) Program
Office of the HHS Secretary
--$60 million for the HHS Office of Minority Health
Department of Education
--$125 million for the Historically Black Graduate Institution (HBGI)
Program
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray, and distinguished members of
the subcommittee, thank you for the opportunity to present testimony
and thank you for your leadership in addressing challenges facing the
health workforce, health disparities, and medically underserved
communities. I am Dr. Valerie Montgomery Rice, President & Dean of the
Morehouse School of Medicine. Our school was one of the founding
members of the Association of Minority Health Professions Schools
(AMHPS), 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. Historically, the
just twelve (12) schools of our association have trained half of the
Black physicians in the US, half of the Black dentists, 75 percent of
the Nation's Black pharmacists, and 70 percent of the Nation's Black
veterinarians. Our graduates disproportionately serve in medically
underserved communities, in primary care specialties. In fact,
Morehouse School of Medicine, and Meharry Medical College (our sister
HBCU medical school in Nashville) were named #1 and #2 in social
mission compared to all US medical schools by the Annals of Internal
Medicine. Our institutions are committed to resolving the healthcare
needs of every American and are at the forefront of this important
effort. Your investment in our institutions is paying off.
AMHPS membership includes the health professions institutions of
Morehouse School of Medicine, Howard University, Meharry Medical
College, Charles Drew University, Florida A&M University, Hampton
University, Texas Southern University, Xavier University, and Tuskegee
University. Today, AMHPS institutions compete for key programs
administered by HRSA, CDC, NIH, the HHS Office of Minority Health, and
the Department of Education to advance our collective mission, as well
as the mission of this subcommittee: to diversify the health workforce,
advance research that addresses health equity, and improve health
outcomes.
HRSA's Title VII health professions training and pipeline programs
are key resources for addressing the Nation's workforce shortages and
health challenges. HRSA's Minority Centers of Excellence (COE) address
this challenge through its focus on improving student recruitment and
performance, strengthening curricula in cultural competence, and
training students to provide health services to minority individuals.
The Health Careers Opportunity Program (HCOP) provides a mechanism for
us to mitigate theses shortages by providing grants to health
professions institutions in order to support pipeline, preparatory, and
recruiting activities in the health professions. These grants are
utilized to encourage minority and economically disadvantaged students
to pursue careers in the health professions at the collegiate and high
school levels. Students who demonstrate that they have the talent and
potential to become a health professional can access the Scholarships
for Disadvantaged Students program. HRSA programs are essential for
pipeline recruitment activities and through the HCOPs, COEs, or AHECs,
these programs are highly meaningful for recruiting, mentoring, and
training students from underrepresented minority, rural, and
disadvantaged backgrounds.
The National Institute on Minority Health & Health Disparities
(NIMHD) has been a key partner of the AMHPS institutions. The NIMHD has
invested in improving our research capabilities through the ongoing
development of our faculty, labs, and other learning resources. These
investments take form through the NIMHD's extramural programs such as
the Research Centers at Minority Institutions program, the Research
Endowment Program and its Centers of Excellence Program. NIMHD also
supports biomedical research focused on eliminating health disparities
through various funding opportunities and develops a comprehensive plan
for research on minority health at the NIH.
Madam Chair, we have contended with some challenges recently in the
administration of several NIMHD programs. With the retirement of the
longstanding director of the NIMHD, a temporary acting director, and
now a new permanent director, NIMHD's keystone programs such as RCMI
and Research Endowments that are critical to our infrastructure are no
longer prioritized by the institute. The Research Centers at Minority
Institutions (RCMI) program was initiated by this very subcommittee in
1986 and championed by the Honorable Louis Stokes (D-OH). The one
program at NIH designated to support research infrastructure
specifically at minority health professions schools (hence the name of
the program) is no longer limited to minority institutions, even though
the language establishing RCMI specifically states ``an institution
must have more than 50 percent minority enrollment...''
Arbitrary administrative changes in the Research Endowment
Program--established to help institutions like Morehouse School of
Medicine, which have modest endowments--have left the very institutions
the program was intended to help, unable to compete for the program.
This is in light of the fact that no school has reached the endowment
level stated as the goal of the program. Neither RCMI nor the Research
Endowment program is given much discussion by the NIMHD congressional
budget justification. We need help from this subcommittee to reverse
these poor decisions made by NIMHD.
Racial and Ethnic Approaches to Community Health (REACH) is a
national program administered by the Centers for Disease Control and
Prevention (CDC) to reduce racial and ethnic health disparities.
Through REACH, recipients plan and carry out local, culturally
appropriate programs to address a wide range of health issues among
African Americans, and other minority groups. REACH provides funds to
State and local health departments, Tribes, universities, and
community-based organizations. Recipients use these funds to build
strong partnerships to guide and support the program's work.
The Department of Education's Strengthening Historically Black
Graduate Institutions (HBGI) program (Title III, Part B, Section 326)
is extremely important to AMHPS. The HBGI program is a successful
program that provides crucial financial support for HBGIs that are
producing underrepresented graduates at the highest levels of academia,
including physicians and graduates in the Science, Technology,
Engineering, Arts, and Math (``STEAM'') disciplines. AMHPS supports
continuing the existing ``hold harmless'' provision contained in the
HBGI program statute as well. The ``hold harmless'' provision requires
that currently participating institutions receive funding support at a
level no less than the previous year as long as they are providing
sufficient matching funds, meeting program objectives, and the annual
appropriated amount is adequate to support it. This provision provides
participating schools a level of budget stability and certainty,
notwithstanding the addition of new institutions.
Chairman Blunt and Ranking Member Murray, please allow me to
express my appreciation to you and the members of this subcommittee for
your efforts to revitalize our Nation's commitment to the health
workforce and health equity. As you begin the fiscal year 2020 process,
we look forward to working with the subcommittee to continue
prioritizing initiatives that improve the quality of health and patient
care, research in health disparities, and health professionals going
into the health workforce.
[This statement was submitted by Valerie Montgomery Rice, MD,
FACOG,
President & Dean, Morehouse School of Medicine.]
______
Prepared Statement of the Association of Science-Technology Centers,
the American Alliance of Museums, the Association of Children's
Museums, and the Association of Science Museum Directors
Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee:
Thank you for accepting this statement submitted by the Association
of Science-Technology Centers (ASTC), the American Alliance of Museums
(AAM), the Association of Children's Museums (ACM), and the Association
of Science Museum Directors (ASMD). We are Cristin Dorgelo, President
and CEO of ASTC; Laura L. Lott, President and CEO of AAM; Laura Huerta
Migus, Executive Director of ACM; and Bonnie Styles, Executive Director
of ASMD.
We appreciate the opportunity to present the views of our
associations to the Subcommittee for its consideration as it prepares
to write the fiscal year 2020 Labor, Health and Human Services,
Education, and Related Agencies Appropriations bill, particularly
regarding the Science Education Partnership Awards (SEPA) at the
National Institutes of Health, the Office of Museum Services (OMS)
within the Institute of Museum and Library Services (IMLS), and the
U.S. Department of Education's 21st Century Learning Centers and Title
II Effective Teaching Program.
Our associations represent more than 5,000 member organizations in
every State and district in America, including science centers and
museums, nature centers, aquariums, zoos, planetariums, botanical
gardens, and natural history and children's museums, as well as
companies, consultants, and other organizations that share an interest
in science education and public engagement in science.
Taken together, our national reach is a vital resource for
fostering rich public engagement in the importance of science and many
other subjects and disciplines towards building a bright future and
opportunity for all.
Our place-based organizations are leading institutions in the
efforts to promote education in science, technology, engineering, and
mathematics (STEM), developing rich, innovative, and effective science-
learning experiences. We are helping to create the future STEM
workforce and inspiring people of all ages about the wonders and the
meaning of science in their lives. And our members are trusted and
valued by their communities--a recent national public opinion poll,
showed that 95 percent of voters would approve of lawmakers who acted
to support museums and 96 percent of voters want Federal funding for
museums to be maintained or increased (Museums and Public Opinion,
Wilkening, S. and AAM, 2018).
In the past, we have testified on behalf of the specific funding
levels for programs under this Subcommittee's jurisdiction. But today
we also want to commend this Subcommittee through a look at the bigger
picture--the overall science budget of the U.S. Federal Government.
As you are well aware, for the past 2 years the Administration
proposed significant cuts to the budgets of a number of domestic
agencies. Included in the list of impacted programs were a number of
science agencies and science programs. Similar cuts have been proposed
in the Administration's fiscal year 2020 budget.
We want to thank you for not allowing the cuts to move forward. We
urge you to reject them in the fiscal year 2020 budget as well. Of
course, the first hurdle to cross to fully fund all the programs is to
raise or repeal the budget caps. To do otherwise will result in
devastating impacts to America's scientific enterprise and force you to
forego critical investments in our students at a time when we must
equip all Americans with the skills they need to thrive in the future
workforce.
Taken together, the investments being made by the U.S. Federal
Government in science and research is larger than ever. On behalf of
the all the members of ASTC, AAM, ACM, and ASMD--and the communities
they serve--we want to say thank you, with gratitude for a job well
done.
Our associations and the member organizations we represent in
America's communities were active and vocal supporters of a robust
budget for science and for STEM education budgets last year. Many of
our institutions hosted science days, participated in community
celebrations of science, and reached out to their elected
representatives to make the case for the importance of science and STEM
education. This year and into the future, our associations will all
continue to advocate for robust research, STEM education, and science-
engagement funding at every opportunity.
In December 2018, a new 5-year Federal STEM Education Strategic
Plan was published by the interagency National Science and Technology
Council's Committee on STEM Education. The new plan reflects a vital
roadmap for public-private cooperation to advance STEM education, and
we encourage the Subcommittee to fund programs that support our museum
members in making further progress towards the plan's aspirational
goals, which include:
--Building strong foundations for STEM literacy by ensuring that
every American has the opportunity to master basic STEM
concepts, including computational thinking, and to become
digitally literate.
--Increasing diversity, equity, and inclusion in STEM and providing
all Americans with lifelong access to high-quality STEM
education, especially those historically underserved and
underrepresented in STEM fields and employment.
--Preparing the STEM workforce for the future by creating authentic
learning experiences that encourage and prepare learners to
pursue STEM careers.
School-aged youth spend 80 percent of their time outside of the
classroom. Research has consistently shown that learning experiences
outside of the formal classroom are vitally important to youth's future
interest and capacity in STEM (National Research Council, 2006, 2009,
2015).
Every day, our science centers, museums, zoos, and aquariums open
their doors for students and the public. Every day, throughout the
United States, they reach out to students of underserved populations in
both urban and rural areas, so that quality STEM education can be
accessed by every American student. Every day, they welcome girls and
youth from backgrounds historically underrepresented in STEM fields,
providing positive examples and experiential learning opportunities so
that these youth know there is a place for them in the scientific
community.
Every day, our museums provide educational experiences with
science, technology, and other subjects in interesting, innovative, and
effective ways--including through transdisciplinary approaches that
connect youth with how science, technology, engineering, and math
relate to community issues and real-world problem solving. Every day,
staff at our museums train teachers on effective science teaching
practices and develop curriculum aligned with Next Generation Science
Standards in partnership with local schools. Every day, they open their
doors and reach out to every student in their communities, to ensure
that our Nation has the trained STEM workforce we will need for the
future.
With continued Congressional support for programs that support
informal STEM education, afterschool, out-of-school, and summer
learning, and public engagement in science programs, you will make our
efforts more effective.
Turning to specifics, ASTC strongly urges the Subcommittee to
appropriate at least $20.1 million for the Science Education
Partnership Awards (SEPA) at the National Institutes of Health.
We also urge you to fully fund the Institute of Museum and Library
Services (IMLS) at or above $257 million, and to provide at least $38.6
million for its Office of Museum Services. The museum programs at IMLS
provide crucial resources for the informal science activities at
science centers and museums throughout the country.
Finally, within the U.S. Department of Education, we urge you to
provide at least $2.065 billion for the Title II Effective Teaching
Program, at least $1.17 billion for the Title IV-A Students Support and
Academic Enrichment program, and at least $1.32 billion for the Title
IV-B 21st Century Learning Centers.
In short, we strongly urge you to again reject the Administration's
proposals to cut these programs and to maintain funding levels in
fiscal year 2020 in a new, bipartisan budget deal that raises the
spending caps and supports American innovation through critical
investments in science, advancing science education, and public
engagement in science.
We continue to thank this Subcommittee for all its support of a
robust science budget. You have demonstrated your support for crucial
programs that promote STEM education for our Nation's students. Like
our organizations, you recognize these are vital investments in our
future, and we thank you in advance for taking action accordingly.
______
Prepared Statement of the Association of State and Territorial Health
Officials
On behalf of the Association of State and Territorial Health
Officials (ASTHO), I respectfully submit this testimony on fiscal year
2020 appropriations for the U.S. Department of Health and Human
Services (HHS). ASTHO is requesting $8.3 billion for the Centers for
Disease Control and Prevention (CDC), $824 million for the Public
Health Emergency Preparedness Program (PHEP), $170 million for the
Preventive Health and Health Services Block Grant (Prevent Block
Grant), and $50 million for the Infectious Disease Rapid Response
Reserve Fund. Under the Assistant Secretary for Preparedness and
Response (ASPR), we are requesting $474 million for the Hospital
Preparedness Program (HPP) and $49.5 million to sustain the Regional
Treatment Network for Ebola and Other Special Pathogens (RTNESP) and
the National Ebola Training and Education Center (NETEC). Additionally,
we are requesting $8.56 billion in discretionary funding for the Health
Resources and Services Administration (HRSA) and a $500 million
increase for the Substance Abuse and Mental Health Services
Administration (SAMHSA) Substance Abuse Prevention and Treatment (SAPT)
Block Grant.
ASTHO is the national nonprofit organization representing the
public health agencies of the United States, the U.S. territories and
freely associated States, and the District of Columbia. ASTHO members,
the chief health officials of these jurisdictions, are dedicated to
ensuring excellence in public health practice. The mission of our
Nation's governmental health agencies is to protect and improve the
health of the population, everywhere, every day. The work of public
health is often invisible, and sometimes it is only in a crisis when
the value and importance of sustained investment in public health
becomes apparent. Those crises, unfortunately, happen all too often:
the current measles and hepatitis A outbreaks, natural disasters,
rising obesity rates, the long-term impact of Zika on the developing
brains of young children, the opioid epidemic, and many others
highlight the important work of disease prevention and health
protection that is at the core of public health's mission.
Just like our transportation system, our healthcare system, and our
air traffic control system, the governmental public health system needs
a predictable, sustained, and increased investment to deliver the
essential public health services all Americans expect and enjoy.
However, I fear this will not be possible under current law. As you
know all too well, sequestration returns this year with a $55 billion
cut to non-defense discretionary spending as proposed by the
President's Budget. Public health funding simply has not kept pace with
the requirements for our mission. Governmental public health systems
are crumbling at every level due to ongoing underfunding and a growing
population. ASTHO's ``22x22'' campaign, endorsed by over 80 national
organizations, urges Congress to increase funding for the CDC by 22
percent by fiscal year 2022. We request $8.3 billion for CDC overall.
This increase is important because American life expectancy has
declined for the first time in decades due to heart disease, stroke,
diabetes and drug overdoses. Federal investment in public health has
not kept pace with inflation nor the considerable challenges posed by
infectious disease outbreaks, extreme weather events, and other
emergencies. According to a 2017 Trust for America's Health report,
only 3 percent of all health spending is directed to public health out
of the $3.36 trillion spent on healthcare. Finally, the waning public
health workforce strains the ability of State and local public health
departments to protect and promote the health of the population. The
``22x22'' campaign is an effort to bolster CDC's funding over the next
4 years to eventually reach $8.8 billion for the agency by fiscal year
2022. One of the most striking examples of the need for increased,
predictable, and sustained funding for the CDC is the recent measles
outbreak--an entirely preventable crisis. Vaccines are one of the core
functions of the public health systems in our country. Addressing
outbreaks requires a strong, coordinated response from Federal, State,
territorial, and local governments. In these scenarios, the CDC--and
the funding it provides to these entities--is critical. State and
territorial health departments dispense vaccines and also provide
outreach and education about their effectiveness, all while
investigating pockets of infection in order to contain the spread of
disease. Establishing and maintaining solid public health systems allow
health departments to prevent, protect, respond, and recover from
events and reduce the human and financial tolls.
Critical to public health preparedness and response is the support
public health receives from the PHEP Cooperative Agreement, for which
we request $824 million. Since its establishment in 2002, the program
has invested in States and territories to create and maintain
foundational capabilities. It is critical to provide stable and
sufficient health emergency preparedness funding to maintain a standing
set of core capabilities, so they are ready when needed. The program
funding--once at $918 million in 2002--is 26 percent lower at $675
million, with public health threats not experiencing similar declines.
In close partnership with the PHEP program is the Hospital Preparedness
Program (HPP). ASTHO requests $474 million for HPP. As the only source
of Federal funding that supports regional healthcare system
preparedness, HPP promotes a sustained national focus to improve
patient outcomes, minimizes the need for supplemental State and Federal
resources during emergencies, and enables rapid recovery. The work of
these programs is something that we should all be proud of and,
therefore, continue to increase funding for both. In addition to the
HPP, we are requesting that Congress provide $49.5 million to sustain
the Regional Treatment Network for Ebola and Other Special Pathogens
(RTNESP) and the National Ebola Training and Education Center (NETEC)
that are under ASPR's leadership. Moreover, ASTHO is grateful for
including $50 million for an Infectious Diseases Rapid Response Reserve
Fund at the CDC in fiscal year 2019. This allows CDC to quickly respond
to public health emergencies at the Federal, State, and local levels.
We urge Congress to support the President's request by adding $50
million to this funding mechanism for fiscal year 2020.
Prevention is the best form of treatment. For this, ASTHO requests
$170 million for the Prevent Block Grant. Programs funded by the
Prevent Block Grant cannot be adequately supported or expanded through
other funding mechanisms. States use these flexible dollars to offset
funding gaps in programs that address the leading causes of death and
disability. The success of the Prevent Block Grant is achieved by using
evidence-based methods and interventions, reducing risk factors,
leveraging other funds, and continuing to monitor and reevaluate funded
programs.
CDC is not the only Federal agency that supports safety-net
programs in States and territories. ASTHO is requesting $8.56 billion
for discretionary funding for HRSA. HRSA administers programs that
focus on improving care for tens of millions of Americans who are
medically underserved or face barriers to needed care by strengthening
the health workforce.
ASTHO is also encouraged by the Administration's plan to end the
HIV epidemic in America. State and territorial health officials look
forward to working with Federal and local partners across the country
to bring effective strategies to scale. State, territorial, local, and
tribal jurisdictions and our community-based organizations and
healthcare partners must have the resources necessary to enhance and
deliver these evidence-based public health interventions and not pull
funds from other vital public health programs.
State and territorial health departments are on the front lines of
responding to the current crisis in our country caused by substance
misuse, addiction, and drug overdoses. ASTHO is appreciative of
previous investments in public health toward this effort and supportive
of an increase of $500 million, or a total of $2.4 billion, for the
Substance Abuse Prevention and Treatment Block Grant at SAMHSA to
sustain activities and continue the response to the opioid epidemic and
substance abuse and misuse disorders more broadly.
Health indicator data from the territories and freely associated
States (FAS) indicates that the health of these populations is far
worse in comparison to the U.S. general population. Therefore, ASTHO
requests that Congress fund a study conducted by the National Academies
of Science, Engineering, and Medicine to better understand the health
impacts of policy on the U.S. territories and FAS. The results of this
research can guide investments, policy, and support and, ultimately,
improve the health of those who reside in these insular areas.
Finally, if sequester cuts go forward, our public health system
will have a diminished capacity to detect outbreaks; assure safe food,
water, and healthcare facilities; and provide immunizations, and these
are just a few examples. My colleagues and I are counting on you and
other members of Congress to develop a bipartisan budget deal to
address sequestration and raise the caps for non-defense discretionary
spending. If we do not do this, we may not be able to ensure the kind
of public health response we all need and expect nationwide.
[This statement was submitted by Michael Fraser, PhD, MS, CAE,
FCPP, Chief Executive Officer, Association of State and Territorial
Health Officials.]
______
Prepared Statement of the Association of University Programs in
Occupational Health and Safety
On behalf of Association of University Programs in Occupational
Health and Safety (AUPOHS), we respectfully request that the fiscal
year 2020 Labor, Health and Human Services Appropriations bill include
no less than $346,300,000 for the National Institute for Occupational
Safety and Health (NIOSH), including not less than a $2 million
increase over the fiscal year 2019 level for the Education and Research
Centers (ERCs), the Agriculture, Forestry and Fishing (AFF) Program,
and the Total Worker Health Program (TWH).
Occupational injury and illness create a striking burden on
America's health and well-being. Despite significant improvements in
workplace safety and health over the last several decades, 14 workers
die daily from workplace injuries, and 145 people die from work-related
diseases. Annually, 2.8 million workers are seriously injured on the
job. One third of those injured workers require time off and 5,000
workers lose their lives to job injuries. According to the 2018 Liberty
Mutual Workplace Safety Index, U.S. businesses spend more than $1.1
billion a week on serious, nonfatal workplace injuries.
These figures are especially tragic because many work-related
fatalities, injuries and illnesses are preventable. To improve this
situation effective, professionally directed, health and safety
programs are required. Furthermore, by fostering workplaces that
promote overall employee health and well-being, employers, employees,
families, and communities benefit from improved productivity and
reduced healthcare costs. NIOSH is the primary Federal agency
responsible for conducting research and making recommendations for the
prevention of work-related illness and injury and for promoting worker
health and well-being.
As workplaces rapidly evolve, these changes continue to present new
health risks to workers that need to be addressed through occupational
safety and health research. For example, NIOSH is advancing the
understanding of how emerging technologies such as robotics,
nanotechnology, and advanced manufacturing can be managed to ensure
safe operation. In addition, the opioid crisis is impacting millions of
American workers and workplaces. NIOSH and the Centers developed a
multipronged approach to identify high-risk work conditions leading to
opioid misuse and to opioid use disorder. For example, NIOSH has
focused on protecting responders from exposure to illicit fentanyl and
how to best decontaminate workplaces. NIOSH is also the Federal agency
that is charged with certifying and approving the respirators that are
necessary to protect U.S. workers from inhalation exposures to numerous
chemical and biological agents.
Through 18 university-based centers, the ERCs provide local,
regional and national resources for those in need of occupational
health and safety assistance--industry, labor, government, academia,
non-governmental organizations and the public. Collectively, the ERCs
provide graduate-level education in the occupational health and safety
disciplines and offer professional workforce development training and
research resources to every Federal Region in the U.S. Importantly, the
ERCs play a crucial role in preparing a workforce of occupational
safety and health professionals trained to identify and mitigate
vulnerabilities to terrorist attacks and to increase readiness to
respond to biological, chemical, or radiological attacks. Occupational
health and safety professionals work with emergency response teams to
minimize disaster losses, as exemplified by their lead role in
protecting the safety of 9/11 emergency responders in New York City and
Virginia. More recently in 2017, occupational health and safety
professionals worked to minimize hazards among workers involved in
clean up and restoration in the face of the extreme devastation caused
by Hurricanes Harvey, Irma and Maria in Texas, Florida, Puerto Rico and
the U.S. Virgin Islands.
NIOSH also focuses research and outreach efforts on the Nation's
most dangerous worksites that often impact lives in more rural parts of
America. The Centers for Agricultural Safety and Health were
established by Congress in 1990 (Public Law 101-517) in response to
evidence that agricultural, forestry and fishing workers suffer
substantially higher rates of occupational injury and illness than
other U.S. workers. According to 2018 bureau of labor statistics data,
these agricultural workers are more than 6 times more likely to die on
the job than the average worker. The AFF sector averages 540 fatalities
per year resulting in the highest fatality rate of any employment
sector in the Nation. Today the Agriculture, Forestry, and Fishing
(AFF) Initiative includes ten regional Agricultural Centers and one
national children's farm safety and health center.
The AFF program is the only substantive Federal effort to ensure
safe working conditions in these vital production sectors. While
agriculture, forestry, and fishing constitute some of the largest
industry sectors in the U.S. (DOL 2011), most AFF operations are small:
nearly 78 percent employ fewer than 10 workers, and most rely on family
members, immigrants, part-time, contract and/or seasonal labor. Many of
these agricultural workers are excluded from labor protections,
including OSHA oversight, on the vast majority of American farms. More
than 1 in 100 AFF workers incur nonfatal injuries resulting in lost
work days each year. These reported figures do not even include men,
women, and youths on the most dangerous farms--those with fewer than 11
full-time employees.
In addition to the harm to individuals and families, these deaths
and injuries inflict serious economic losses including medical costs
and lost capital, productivity, and earnings. The life-saving, cost-
effective work of the AFF program is not replicated by any other
agency. For example, State and Federal OSHA personnel rely on NIOSH
research in the development of evidence-based standards for protecting
agricultural workers and would not be able to fulfill their mission
without the AFF program. Also, staff members of USDA's National
Institute of Food and Agriculture interact with NIOSH occupational
safety and health research experts in order to learn about the cutting-
edge research and new directions in this area.
The AFF program activities have made demonstrated impacts on safety
and health, as illustrated in the following examples. (1) AFF research
showing that rollover protective structures (ROPS or rollbars) and
seatbelts on tractors can prevent 99 percent of overturn-related
deaths. (2) Developing training materials in partnership with producers
to deliver evidence-based practical solutions that reduce exposures
when handling pesticides and other farm chemicals among farmers workers
and their children. (3) Partnering with fishing communities to develop
and test improved life-jacket designs that are comfortable enough to
wear while working, markedly improve chances of survival in the event
of a fall overboard. (4) The Agricultural Centers have partnered with
producers, employers, the Federal migrant health program, physicians,
nurses, and Internet Technology specialists to educate farmers,
employers, and healthcare providers about the best way to treat and
prevent agricultural injury and illness. (5) The logging industry has a
fatality rate more than 30 times higher than that of all U.S. workers.
The Agricultural Centers have conducted ongoing studies and outreach
efforts to ensure the safety of our Nation's 86,000 workers in forestry
& logging.
NIOSH supports six Centers of Excellence for Total Worker Health
(TWH) that conduct multidisciplinary research, test practical
solutions, engage and educate employers and employees, with the goal of
improving the overall safety, health, and well-being of the diverse
population of workers in our Nation. The TWH Centers 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. For example, most U.S. employers
report that stress and mental health are major concerns for the
effectiveness and well-being of their workforce. Work conditions
including shift work, heavy lifting, and use of technology, can
increase risk of injury and illness and impact worker health.
Consequences can include higher rates of substance use, poor sleep,
musculoskeletal disorders, poorer mental health, obesity,
cardiovascular disease, and cancer. In turn, ill health, and chronic
conditions impact job performance, increasing risk for serious injury,
absenteeism, and reduced productivity.
TWH Centers conduct solutions-focused research in partnership with
employers, to understand the underlying causes and then test and
implement interventions to addressing these challenges. For example,
TWH Centers have developed and evaluated interventions to reduce
injuries and disease among workers in corrections, construction,
emergency response/firefighters, healthcare, retail, food service,
manufacturing, on-demand drivers, agriculture, and small businesses of
all types. TWH Centers partner with small and large enterprises to
address the needs of workers of all ages. These interventions have been
shown to produce improvements in blood pressure, smoking rates,
depression, stress, fewer lost work days due to injury, and savings for
employers. In summary, the TWH Centers are an investment in the
American economy, helping valued employees return home at the end of a
productive day safe and healthier.
We urge you to recognize the important contribution of NIOSH,
including the ERCs, the AFF Program, and the TWH Program to the health
and productivity of our Nation's workforce. Thank you for the
opportunity to submit testimony.
______
Prepared Statement of BakerRipley
Dear Chairman Blunt:
BakerRipley supports a $6,000,000 increase in funding for the
Administration of Community Living's Alzheimer's Disease Programs
Initiative (ADPI) for a total of $29,500,000. This program supports and
promotes the development and expansion of dementia-capable home and
community-based long-term services and support systems in States and
communities.
BakerRipley exists to keep Greater Houston a welcoming place of
opportunity where everyone can earn, learn, belong and be well.
BakerRipley's Health and Wellness Division promotes the dignity and
independence of older adults and over the past thirty years, we have
developed a reputation for innovation and excellence as we serve older
adults with early to severe dementia and their caregivers. ADPI funds
have allowed BakerRipley, in collaboration with the State of Texas and
other regional partners, to lead in the development and implementation
of programs focused on improving the recognition and response to older
adults with dementia and their family caregivers.
improving local community response
BakerRipley's first project funded through this program was the
Houston Alliance to Address Dementia. This demonstration project aimed
to address the dementia related knowledge and service gaps within
Houston's aging and community service networks and provide better, more
responsive services for those living with dementia and their families.
The Houston Alliance to Address Dementia project investigated how
Houston responds to individuals with dementia and their families and
developed the foundation for further exploration to improve our
response to this population. The Alliance recruited over 27 community
and healthcare partners to better serve individuals affected by
dementia and provided them with basic knowledge and tools they could
use to connect families to local, proven services.
The project increased community knowledge of dementia and awareness
about related resources and laid the groundwork for additional
community level change. The project also prompted further conversation
and exploration around the concept of ``comprehensive care
coordination'' in better serving the needs of individuals living alone
with dementia. The network that was developed continued after the ADPI
funding ended, with more than 300 families per year directly connected
with services that improve their quality of life.
improving state healthcare's response
Through the ADPI program, the State of Texas is improving supports
provided to people with dementia who are dually eligible for Medicare
and Medicaid. Building upon the learnings from the California Dementia
Cal MediConnect Project and the Houston Alliance to Address Dementia
project, Texas Health and Human Services, in partnership with
BakerRipley, has engaged three health plans to improve their service
delivery to this population, improving both the health and quality of
life of the individual and the costs associated with care. Results of
the ADPI-supported efforts include:
--Health plan adoption of validated cognitive impairment screening
tools,
--Identification, assessment, support, and engagement of family
caregivers; and,
--Adoption of a formal, warm handoff referral system to connect
families and individuals to dementia-specific, community-based
services.
The potential improvements to healthcare delivery to this
population are appealing to the plans, as well as the State. Health
plans have asked to continue this work past ADPI funding as they see
the benefit both for their members and for their costs.
improving local healthcare response
Most recently, BakerRipley received ADPI funding to expand upon the
original Houston Alliance to Address Dementia project and focus on
creating better connections to local healthcare organizations.
Partnership with an established health system (Houston Methodist
Coordinated Care, a local Accountable Care Organization) will allow
improved care coordination and communication across community based and
health service providers. The planned health system partnership will
also create opportunity for improvements in dementia capability among
the Houston aging and healthcare networks. Through the ADPI funding,
specific cost data and health outcomes for individuals utilizing
dementia-specific community services will be tracked and a case could
be made in Texas for other healthcare payers, such as Managed Care
Organizations to contract with these services as part of a cost
reduction and quality of care improvement plan.
In summary, the Federal Alzheimer's program, now known as the ADPI,
has been essential in Texas's State and local efforts to improve the
quality of care, health outcomes, and costs associated with living with
dementia. This funding has supported the development of programs with
positive outcomes, but more importantly sustainability. We encourage
the Labor Health and Human Services, Education, and Related Agencies
Subcommittee to robustly fund this program. As the primary Federal
program focused on the development of home and community-based long-
term care services, funding of $29,500,000 will ensure that families
impacted by dementia are supported and individuals remain safe.
I thank you for this opportunity to speak about the impact and
importance of the Alzheimer's Disease Program Initiative and hope you
continue to support this invaluable program.
Sincerely.
[This statement was submitted by Katie Scott, MPH, Senior Director
of Dementia and Caregiver Support Services, BakerRipley.]
______
Prepared Statement of Bari Jonathan and Leslie deg.
Prepared Statement of Jonathan and Leslie Bari
overview
We are the Pennsylvania parents of a 6 year old son who was
diagnosed in 2018 with Celiac Disease, a serious autoimmune disease
that afflicts about 3 million Americans. We echo the recent testimony
of Marilyn Geller, CEO of the Celiac Disease Foundation, to the U.S.
House of Representatives Committee on Appropriations, Subcommittee on
Labor, Health and Human Services, Education, and Related Agencies, when
Geller stated, ``If I leave you with one message today, it is that
Celiac Disease is, in fact, a serious autoimmune disease that is not
being taken seriously enough by our government.'' \1\
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\1\ Testimony of Marilyn G. Geller, CEO, Celiac Disease Foundation
(Los Angeles, CA), to the U.S. House of Representatives Committee on
Appropriations, Subcommittee on Labor, Health and Human Services,
Education, and Related Agencies, April 9, 2019, https://celiac.org/
april-2019-congressional-testimony-by-ceo-marilyn-g-geller/?
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Today, many people have conflated the popular Gluten Free diet
craze with the medically required Gluten Free diet for people with
Celiac Disease. In 1952, it was first discovered that Gluten was the
trigger of Celiac Disease.\2\ To cure Celiac Disease, we need to
fundamentally shift how our government leaders are educated on this
disease. Why? Because the current research paradigm for Celiac Disease,
one that has existed for many decades, has not delivered a cure or even
a way to treat accidental ingestion of Gluten. There is no medicine or
surgery available to treat Celiac Disease. To date, Celiac Disease
research has produced only a single approved treatment--strict
adherence to a lifelong Gluten Free diet with no exceptions! However,
as Celiac Disease researchers have found, ``[t]here is no such thing as
a gluten-free diet because of the constant risk of cross-contact with
gluten, and gluten is in 80 percent of our foodstuffs.'' \3\
Additionally, for up to 30 percent of patients, diet alone is
inadequate for remission in that it alleviates some symptoms, but does
not heal and resolve intestinal damage caused by Celiac Disease.\4\
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\2\ ``From Mussels to Bananas to Gluten: Celebrating Samuel Gee &
Advances in celiac Disease Research,'' Beyond Celiac, August 27, 2018,
https://www.beyondceliac.org/celiac-disease-news/celebrating-celiac-
awareness-day-2018/.
\3\ Testimony of Marilyn G. Geller, April 9, 2019.
\4\ Celiac Disease Foundation, https://celiac.org/about-celiac-
disease/poorly-responsive-celiac-disease/.
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Anecdotally, we can attest to the treatment burden including the
constant concern over cross contamination and inclusion of our son in
life's numerous daily activities that involve food at home, at school
(in Kindergarten) and away from home. Research has shown that the
treatment burden of Celiac Disease is comparable to end-stage renal
disease, and the partner (or parent) burden is comparable to caring for
a patient with cancer.\5\
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\5\ ``Patient Perception of Treatment Burden is High in Celiac
Disease Compared to Other Common Conditions,'' PMC, National Library of
Medicine, National Institutes of Health, July 1, 2014, https://
www.ncbi.nlm.nih.gov/pmc/articles/PMC4159418/, and ``What is Celiac
Disease?'', Celiac Disease Foundation, https://celiac.org/about-celiac-
disease/what-is-celiac-disease/.
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While the NIH purportedly makes allocation decisions on what
diseases deserve Federal research funding based on disease burden and
prevalence, NIH has seriously under-funded Celiac Disease over the last
decade, even as the number of Americans diagnosed with Celiac Disease
has kept increasing. Moreover, as detailed herein, NIH funding for
Celiac Disease has significantly trailed comparable diseases that have
the same or less prevalence, the same or less disease burden
measurements, as well as more than one available treatment option. That
is unacceptable! We need the U.S. Government, including the NIH and
CDC, to step up and invest meaningful resources to find a cure to this
debilitating disease that directly impacts the lives of 1 percent of
Americans, in addition to their families and/or partners, on a daily
basis. Celiac Disease is so serious that it is a ``disqualifying
condition'' from service in the U.S. Military.\6\
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\6\ U.S. Department of Defense, ``DoD Instruction 6130.03, Medical
Standards for Appointment, Enlistment, or Induction into the Military
Services,'' Section 5.12.c.(3), May 6, 2018, https://www.esd.whs.mil/
DD/.
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suggested report language to the nih
We are respectfully asking that the Senate Appropriations Committee
include the following Report Language to the National Institutes of
Health:
``The Committee recognizes the serious issue of Celiac Disease
which affects more than 3 million Americans, and that the number
afflicted is growing. The Committee urges NIH to devote sufficient,
focused research to the study of Celiac Disease. To date, NIH has
examined symptoms of Celiac Disease and has not focused upon antecedent
Celiac Disease and the autoimmune causation underpinning the
affliction. Today, the only known treatment for this disease is a
Gluten Free diet; but, recent private sector research has revealed that
such a treatment is insufficient for many who suffer from Celiac
Disease. Therefore, the Committee directs the Office of the Director to
dedicate sufficient resources and robust investment toward multi-
institute research to better coordinate existing research and focus new
research efforts toward understanding causation and ultimately, finding
a cure. The Office of the Director is directed to submit its plan for
coordination and execution of this research to the Senate
Appropriations Committee, including the funding and FTE associated with
implementation of this plan, no later than 60 days after the date of
enactment of this Act.''
What is Celiac Disease?
Answer. An Invisible Illness with a Major Impact on
People's Health
According to the University of Chicago Celiac Disease Center,
``Celiac disease is an inherited autoimmune disorder that affects the
digestive process of the small intestine. When a person who has celiac
disease consumes gluten, a protein found in wheat, rye and barley
[gluten helps food items maintain their shape, acting as a glue that
holds food together \7\], the individual's immune system responds by
attacking the small intestine and inhibiting the absorption of
important nutrients into the body.'' \8\ ``Specifically, the tiny
fingerlike protrusions called villi on the lining of the small
intestine are lost [damaged].'' \9\ 30-40 percent of Americans carry
the genes for Celiac Disease, but only about 1 percent have Celiac
Disease. No one knows what causes Celiac Disease to activate in some
people, but not others. This is one of the key research areas that
needs funding. Additionally, Celiac research has the potential to
enhance understanding and improve therapies for other auto-immune
conditions and unlock the mysteries of the microbiome which may enable
treatment for a wide spectrum of diseases.
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\7\ ``What is Gluten?'', Celiac Disease Foundation, https://
celiac.org/gluten-free-living/what-is-guten/.
\8\ University of Chicago Celiac Disease Center, Facts and Figures,
https://www.cureceliacdisease.org/wp-content/uploads/
341_CDCFactSheets8_FactsFigures.pdf.
\9\ University of Chicago Celiac Disease Center, https://
www.cureceliacdisease.org/overview/.
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our son's potential reactions to ingestion of gluten
For all Celiac Disease sufferers such as our son, the Gluten
protein (even in trace amounts such a crumb) can pose a severe health
risk for:
A. Short-term sickness including abdominal pain, gas, diarrhea and/
or vomiting; and
B. Long-term damage to the small intestine (which affects his
ability to absorb nutrients required for proper growth and
development), and an increased risk of other medical conditions
including, but not limited to, auto-immune thyroiditis, liver
disease, inflammatory bowel disease, osteopenia, osteoporosis,
infertility, neurological conditions, cancer (lymphoma),\10\
and immunological scarring.\11\
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\10\ Beyond Celiac, Fast Facts about Celiac Disease Infographic,
www.beyondceliac.org , and https://www.beyondceliac.org/60forceliac/
Fast-Facts-about-Celiac-Disease-Infographic/1448/.
\11\ Celiac Disease Foundation, ``Chronic Inflammation Permanently
Alters Immune Cells in Celiac Patients,'' https://celiac.org/about-the-
foundation/featured-news/2019/02/chronic-inflammation-permanently-
alters-immune-cells-in-celiac-patients/.
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Food Allergies Significantly Impact Psychosocial Well-Being \12\ of
Children with Food Allergies
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\12\ Beyond Celiac, Psychosocial Impacts of Celiac Disease
Infographic, https://www.beyondceliac.org/60forceliac/Psychosocial-
Impacts-of-Celiac-Disease-Infographic/1450/.
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For all intents and purposes, Gluten is poison to our son's body,
and it is analogous to the serious danger that peanuts pose to those
who are afflicted with nut allergies. Eating Gluten does not initiate
an anaphylactic cascade reaction in Celiac Disease patients. However,
the ingestion of Gluten, even accidental ingestion of a trace amount of
Gluten, can sicken and endanger (set back) the healing of a patient's
small intestine enabled through his/her strict adherence to a Gluten
Free diet, and/or trigger new damage to the small intestine that could
take additional years to heal. There is no medicine available (i.e.,
epinephrine pen for nut allergies) to take to treat any accidental
ingestion of Gluten.
According to the CDC, ``Many studies have shown that food allergies
have a significant effect on the psychosocial well-being of children
with food allergies and their families.'' \13\ According to the
University of Chicago, ``Living healthily with Celiac Disease requires
skill in negotiating the everyday environment--especially for children
and teens, where most positive social encounters, from school lunches
to prom, is organized around food.'' \14\
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\13\ U.S. Department of Health and Human Services, Centers for
Disease Control and Prevention, ``Voluntary Guidelines for Managing
Food Allergies in schools and Early Care and Education Programs''
(footnotes 39-45), https://www.cdc.gov/healthyschools/foodallergies/
pdf/13_243135_A_Food_Allergy_Web_508.pdf.
\14\ University of Chicago Celiac Disease Center, 2018 Year End
Report, https://www.cureceliacdisease.org/wp-content/uploads/
CdC_YearEnd_Report_18_WEB.pdf.
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Disparities Among Gastrointestinal Disorders in Research Funding From
NIH
To understand and correct the historically inadequate NIH funding
of Celiac Disease, it is instructive to read the peer reviewed academic
analysis published in 2017 by the American Gastroenterological
Association entitled, ``Disparities Among Gastrointestinal Disorders in
Research Funding From the National Institutes of Health.'' This
analysis was written by some of the world's leading GI researchers,
which found that, out of various Gastrointestinal Disorders, from 2011-
2015:
A. ``Celiac disease consistently received the lowest amount of NIH
funding over the 5-year period, at approximately $3 million per
year.''
B. ``Celiac disease consistently received the lowest amount of NIH
grants, at approximately eight grants per year.''
C. ``Barrett's esophagus, with a prevalence of approximately 1
percent, received $64.1 million over the 5-year period. Celiac
disease, with prevalence very similar to that of Barrett's
Esophagus at approximately 1 percent, received significantly
less funding over the 5-year period at $15.4 million--the
lowest amount of all the diseases studied.''
D. ``Although there is no global metric for disease importance, it is
difficult to justify on medical and scientific bases a reason
for such large and persistent funding differences. Although
Crohn's disease has many available and emerging treatment
options, celiac disease, for example, is more prevalent and has
no current treatment available to patients beyond the
burdensome gluten-free diet; however, celiac disease received
only a small fraction of the funding that Crohn's disease
received from the NIH over the 5-year period.''
E. ``In conclusion, NIH funding of GI diseases is not proportional to
disease prevalence or mortality. These data further suggest
that a few diseases, including IBS and celiac disease, are
underfunded in comparison with other diseases, especially when
the prevalence, burden, and available treatment options are
considered. Plausible reasons for this disparity include
varying numbers of established research programs to recruit
young investigators, fewer grants submitted because of a lack
of investigators in the field owing to poor funding, and narrow
expertise of peer reviewers on NIH review committees. In
contrast with disorders with low funding levels, ample public
and private funding of Crohn's disease allows for excellent
research, which in turn, favors more awards of research
funding. This may seem circuitous; however, funding of Crohn's
disease research provides an example of the way in which
success breeds success.'' \15\
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\15\ ``Disparities Among Gastrointestinal Disorders in Research
Funding From the National Institutes of Health,'' The American
Gastroenterological Association, By: Emma Clerx, Harvard University;
Sonia Kupfer, Celiac Disease Center at University of Chicago; and
Daniel Leffler, North American Society for the Study of Celiac Disease,
Beth Israel Deaconess Medical Center; September 4, 2017, https://
www.gastrojournal.org/article/S0016-5085(17)36084-5/pdf.
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Research in Celiac Disease has lagged behind in the biomedical
imagination of other more well NIH funded research diseases. This has
been a vicious cycle adversely impacting the Celiac Disease research
ecosystem whereby there have been fewer grant submissions, more limited
interest among young researchers as well as very limited funding
available from the private and philanthropic sectors. Public funding is
perceived as validation of the seriousness of a disease and its
research needs. Absent public funding validation, a vacuum is created,
which causes private funding to be scarce. In contrast, the NIH funded
Crohn's disease research model is an example of ``success breeds
success'' that has created a positive feedback loop (network effects)
with ongoing and meaningful government validation, more established
research programs recruiting more young investigators, increased grant
submissions, increased private sector funding, and increased
philanthropic funding.
For fiscal year 2020, we are respectfully requesting that NIH model
its funding of Celiac Disease research on its funding model and scale
for research on Crohn's Disease. In spite of a lower number of disease
specific mortalities as well as many available and emerging treatment
options, Crohn's disease received about 40 NIH grants per year
averaging about $16 million annually from 2011-2015, in comparison to
Celiac Disease which received about 8 NIH grants per year averaging
about $3.0 million annually from 2011-2015. In 2018, the NIH RePORT
suggests that Celiac Disease research received a modest increase to 13
grants totaling approximately $4.7 million. In contrast, in 2018, NIH
research funding for Crohn's disease encompassed 210 grants totaling
$69 million.
Notwithstanding the Herculean efforts by some brilliant, small and
under resourced research teams and advocacy groups, the paucity of NIH
funding has created a vacuum and stifled innovation in the efforts to
treat and cure Celiac Disease. This can change in fiscal year 2020 with
meaningful NIH funding that validates research ready initiatives at
multi-institute translational research centers including at the
University of Chicago Celiac Disease Center, Celiac Disease Center at
Columbia University, the Harvard Medical School Celiac Research Program
and the Children's Hospital of Philadelphia Center for Celiac Disease.
______
Prepared Statement of Bethany Christian Services
family-based care and post-release services for unaccompanied children
On behalf of Bethany Christian Services, we wish to submit outside
written testimony on two important issues: the first is in support of
``Family-Based Care and Post-Release Services for Unaccompanied
Children'' at the Office of Refugee Resettlement and the second is in
support of ``Infant Plans of Safe Care'' at the Administration for
Children and Families.
At Bethany Christian Services, we believe that every child deserves
to be in a loving family. We have a heart for children, and we equip
families to be the answer for children in need. One of the ways we do
this is by assisting unaccompanied refugee children reunify with family
and friends in the United States. Bethany staff accomplishes this by
providing in-home social services for unaccompanied children in Federal
custody who have been identified as survivors of trafficking, fled
community violence, have endured some type of abuse, or are being
reunified with a caretaker. Bethany has been providing critical
services to unaccompanied children for more than 40 years and since
2013, the organization has directly reunified more than 2,00
unaccompanied children with their family and assisted in reunifying
more than 5,000 children.
In order to provide critical services for unaccompanied children,
we recommend that the Committee provide an appropriation of at least
$1,800,000,000 for this account in fiscal year 2020. We also recommend
that the Committee prohibits the use of this funding to support forced
family separation at the southern border, or increased use of large-
scale institutional shelter facilities.
Furthermore, we ask that the Committee directs ORR to comply with
its legally mandated duties as outlined in Section 426 of the Homeland
Security Act of 2002, Section 235 of the William Wilberforce
Trafficking Victims Protection Reauthorization Act of 2008, and the
1997 Flores settlement agreement. We recommend that ORR prioritize
funding for expanded use of community-based residential care placements
(including foster care and small group homes), as well as increased
screening of sponsor placements prior to release (home studies) and
social services following release (post-release services). Finally, we
believe ORR should arrange for such services to be provided by NGOs
with experience and expertise in working with these children.
While poverty, starvation, and a desire to reunify with family are
ongoing motivations to migrate, increasing gang and domestic violence,
coupled with a lack of government protection, remain the primary
factors forcing children to flee Central America. In fiscal year 2018,
50,036 UC were referred to ORR custody and care. Robust funding is
needed to ensure adequate care for UAC, many of whom have experienced
persecution, abuse, trauma, or human trafficking.
Currently, there are significant but improving gaps in adequate
home study and post-release service provision. Many UC have experienced
trauma and prolonged family separation and yet, ORR provides family
reunification services for less than thirty-two percent of children
released from its care. These services offer things like home studies,
in the most serious cases, to assess the safety and appropriateness of
sponsors, as well as case-management or ``post release services''.
Proper funding for home studies and post-release services is the best
way to assess the safety and appropriateness of sponsors and better
protect children. Thus, we urge the Committee to direct ORR to
prioritize funding for an increased percent of UC who are released from
ORR's care. Home studies and post-release services for UC help ensure
safe family reunifications; mitigate the risk for family breakdown;
facilitate children's integration into their communities; assist with
UC's ability to comply with their immigration court proceedings. With
these policy goals in mind, ORR should develop a spectrum of
individualized service options for children released from its custody,
including short-term intensive services, case management, and longer-
term post-release services.
For those who remain in ORR custody, we encourage the Committee to
direct ORR to place UC in community-based care, NGO child welfare
shelters, and other child-friendly settings that reflect the best
interest and needs of such children, including therapeutic placements
and foster homes for young children and pregnant and parenting teens.
We believe ORR should ensure sufficient bed space in such settings
rather than placing children in large-scale institutional facilities.
infant plans of safe care
Our second request for the LHHS Subcommittee for fiscal year 2020
is entitled ``Infant Plans of Safe Care'' and deals with the issue of
caring for newborns impacted by the opioid crisis. We recommend that
HHS prioritize funding for States that have high rates of neonatal
abstinence syndrome and that partner with community-based organizations
to deliver services that are consistent with Safe Care Plan to protect
certain newborns and their caregivers.
The consequences of the opioid epidemic and parental drug use in
recent years have caused thousands of children to be placed in foster
care, overwhelming an already fragile system. We at Bethany Christian
Services have over 75 years of experience serving vulnerable children
and families, and we have found that nearly half of all infants adopted
through our organization in 2018 had birthparents who engaged in both
legal and illegal substance use.
Moreover, infants and toddlers are more likely than older children
to enter foster care because of parental drug abuse (46 percent of
removals vs. 30 percent of removals). In fact, nearly 105,000 children
from birth to age 3 entered foster care in 2017. Experiencing
maltreatment can negatively affect children at any age, but the
implications for children in utero, infants, and toddlers are
especially severe. Abuse and neglect during early developmental stages
can permanently alter brain functioning and have long term behavior and
cognitive ramifications.
Congress has taken strides to equip communities to combat the
devastating impact of addiction on families through The Comprehensive
Addiction and Recovery Act of 2016 (CARA) that directed child welfare
agencies to ensure that Safe Care plans are put into place for the
ongoing safety of the child as well as treatment needs of the
caregiver. Congress also passed the SUPPORT for Patients and
Communities Act last fall which provides additional resources to
specifically address the impact of addiction on families.
We can do more to encourage States to formally partner with
community-based organizations that have the expertise to deliver
services and support to children and their families, consistent with
Safe Care plans to be administered by the Department of Health and
Human Service's Administration for Children and Families and its
Children and Families Services programs. Specifically, we recommend
that the Committee and HHS continue to emphasize the importance of Safe
Care Plans and addressing the health and safety of the child, and any
substance used disorder treatment for their caregivers.
The SUPPORT for Patients and Communities Act is now law, and it
included additional authorizations for the Secretary to collaborate
with and to support States in an effort to improve safe care plans for
substance-exposed infants. As such, we urge Committee to direct the
Secretary to prioritize funding for States that have high rates of
neonatal abstinence syndrome and that partner with community-based
organizations to deliver services that are consistent with the Safe
Care Plan for these newborns and their caregivers. We also encourage
you to direct the Administration for Children and Families to enhance
their coordination with the States and continue working with those
States with high rates of neonatal abstinence syndrome, and request an
update on the work of the Secretary and ACF to implement these new
policies.
Thank you for your continued leadership to help children and keep
families together as we confront the effects of the opioid crisis, and
I appreciate your consideration of Bethany Christian Service's Outside
Written Testimony.
about bethany christian services
Bethany Christian Services was founded in 1944 in West Michigan and
has grown to 120 branch locations in 35 States and 15 countries. The
agency serves thousands of children annually nationwide in foster care
programs and provides services across a continuum of care. Bethany's
mission is to find a loving, permanent home for every child.
[This statement was submitted by Chris Palusky, President/CEO,
Bethany
Christian Services.]
______
Prepared Statement of Beyond Celiac
Celiac disease impacts an estimated 3.2 million Americans as well
as their families and social support networks. It is a serious
autoimmune disorder, a fact which is often misunderstood. Left
undiagnosed or unmanaged, celiac disease can lead over time to lymphoma
or other cancers, an impaired immune system, additional autoimmune
problems and a range of life-threatening medical conditions. Adequate
NIH funding is imperative as a means to address this important public
health issue.
Because celiac disease--which is triggered by the ingestion of
gluten in affected patients--is hereditary, many members and
generations of the same family may show signs of gluten intolerance.
For celiac disease patients, eating gluten creates an immune reaction
in their bodies that damages the small intestine and interferes with
the absorption of nutrients from food, leading to unintentional
malnutrition. Today there is no medical treatment, and no cure.
Currently, the only way to manage the high daily burdens of the disease
and to minimize health risks is to initiate a life-long regimen of a
strict gluten-free diet. For the tens of thousands of children
affected--as well as for minority and lower-income families--this
restriction can be especially difficult. For all celiac disease
patients, finding food that is safe when traveling, eating out, eating
at school or work or in other common circumstances is a significant
challenge. For those with nonresponsive or refractory celiac disease,
even perfection in diet maintenance will not restrain the disease. The
diet is not enough.
Millions of Americans are facing serious, long-term health risks
because of their celiac disease, and research funding levels and focus
are woefully inadequate to address this significant healthcare issue.
NIH funding of GI diseases, including celiac disease, is not
proportional to disease prevalence or mortality. Patients need reliable
treatments and a cure for celiac disease, progress that is only
possible through a national commitment to the effort.
That commitment starts with appropriate NIH funding levels.
In a fall 2017 article in the renowned medical journal
Gastroenterology, authors Emma Clerx, Sonia Kupfer and Daniel Leffler
found that ``NIH funding of GI diseases is not proportional to disease
prevalence or mortality.'' They noted in particular that celiac disease
``is underfunded in comparison with other diseases, especially when the
prevalence, burden and available treatment options are considered.''
Why is underfunding for celiac disease research an ongoing problem?
First, diagnosis rates (and overall awareness of the disease) are
disturbingly low. An estimated 80 percent of people with celiac disease
remain undiagnosed, partly because the symptoms of celiac disease cover
such a broad spectrum. While an autoimmune reaction to gluten is the
same for everyone with celiac disease, the symptoms can vary widely.
Some patients show limited or no GI symptoms, while others have severe
GI reactions. Some patients demonstrate mental issues, fatigue, skin
rashes, reproductive health problems or other complications. Because
celiac disease presents in so many different ways, some of which mimic
other conditions, misdiagnosis remains prevalent. In fact, it takes the
average celiac patient 6--10 years to secure an accurate diagnosis.
Second, many in the medical and funding communities underestimate
the severity of the disease for patients over time. Celiac disease is a
serious autoimmune condition. While we don't fully understand the
nature of the connections with other autoimmune diseases or related
medical issues, those connections are there. Patients with celiac
disease may also be prone to arthritis, various cancers, liver disease,
thyroid disease, Type 1 diabetes and other medical problems.
Third, those who allocate resources for research and disease
management may mistakenly assume that a gluten-free diet is sufficient
to counteract those adverse health outcomes. As explained above, the
diet is virtually impossible to maintain, and even with perfect dietary
compliance, medical complications of a serious nature still emerge over
the long term for many celiac disease patients.
As a result of those three factors, fewer researchers have made
career commitments to finding treatments and a cure for celiac disease.
Fewer pharmaceutical companies are working in the space as well, at
least partially because health insurers and other potential payers for
treatments and medications (including Medicare and Medicaid) have low
awareness of the serious nature of celiac disease and its long-term
costs to the American healthcare system.
Increased NIH funding and focus can begin to turn the tide for more
than 3 million Americans who are looking for answers to the serious
issues living with celiac disease presents. It is not enough, however,
just to increase NIH's funding overall. We need specific instructions
to focus that funding on celiac disease when NIH allocates those funds
to various organizations and research projects in the digestive disease
fields.
With your funding support, we can begin to make progress. And,
along with making advances toward a treatment and cure for celiac
disease, those suffering with other autoimmune conditions may benefit
from that research, as well.
In addition, Beyond Celiac respectfully asks that the Senate
Appropriations Committee include the following Report Language to the
National Institutes of Health:
``The Committee recognizes the serious issue of celiac disease
which affects more than 3 million Americans, and that the
number afflicted is growing. The Committee urges NIH to devote
sufficient, focused research to the study of celiac disease. To
date, NIH has examined symptoms of celiac disease and has not
focused upon antecedent celiac disease and the autoimmune
causation underpinning the affliction. Today, the only known
treatment for this disease is a gluten-free diet; but recent
private sector research has revealed that such a treatment is
insufficient for many who suffer from celiac disease.
Therefore, the Committee directs the Office of the Director to
dedicate sufficient resources and robust investment toward
multi-institute research to better coordinate existing research
and focus new research efforts toward understanding causation
and, ultimately, finding a cure. The Office of the Director is
directed to submit its plan for coordination and execution of
this research to the Senate Appropriations Committee, including
the funding and FTE associated with implementation of this
plan, no later than 60 days after the date of enactment of this
Act.''
Beyond Celiac has been working for more than 15 years to support
and advocate for the needs of the celiac disease community. Our early
work was primarily in the realm of raising awareness, improving food
labeling, and increasing gluten-free food availability and safety. As a
critical first step, this work provided members of the celiac disease
community with the best tools available at the time to better manage
their health.
Beyond Celiac also has worked to raise awareness of the disease,
increase diagnosis rates and build a community of mutual support by
providing the latest information on living with celiac disease and
updates on scientific advancements toward treatments and a cure. All of
that work--as important as it has been--is not enough. We are now
working as a catalyst to drive research toward effective treatments and
a cure.
We stand ready to assist you with connections to our Scientific
Advisory Council of experts or patients and patient advocates, as well
as to provide whatever additional facts or resources you may need as
you consider ways to support this important work.
With our sincere thanks.
[This statement was submitted by Alice Bast, CEO and Marie E.
Robert, MD,
Beyond Celiac.]
______
Prepared Statement of the Brain Injury Association of America
Chairman Blunt and Ranking Member Murray, thank you for the
opportunity to submit this written testimony with regard to the fiscal
year 2020 Labor-HHS-Education appropriations bill. This testimony is on
behalf of the Brain Injury Association of America (BIAA), our network
of State affiliates, and hundreds of local chapters and support groups
from across the country.
In the civilian population alone every year, more than 2.8 million
people sustain brain injuries from falls, car crashes, assaults, and
contact sports. Males are more likely than females to sustain brain
injuries. Children, teens, and seniors are at greatest risk. Currently,
more than 5 million Americans live with a TBI-related disability.
Increasing numbers of service members returning from the conflicts
in Iraq and Afghanistan with TBI and their families are seeking
resources for information to better understand TBI and to obtain vital
support services to facilitate successful reintegration into their
communities.
Administration for Community Living.--The TBI Act authorizes the
Administration for Community Living (ACL) in the Department of Health
and Human Services (HHS) to award grants to (1) States, American Indian
Consortia and territories to improve access to service delivery and to
(2) State Protection and Advocacy (P&A) Systems to expand advocacy
services to include individuals with traumatic brain injury. For the
past twenty years the Federal TBI State Grant Program has supported
State efforts to address the needs of persons with brain injury and
their families and to expand and improve services to underserved and
unserved populations including children and youth; veterans and
returning troops; and individuals with co-occurring conditions.
In fiscal year 2009, the number of State grant awards was reduced
to 15, later adding three more States, in order to increase each
monetary award from $118,000 to $250,000. This means that many States
that had participated in the program in past years have now been forced
to close down their operations, leaving many unable to access brain
injury care.
Increased funding of the program will provide resources necessary
to sustain the grants for the 24 States currently receiving funding and
to ensure funding for additional States. Steady increases over 5 years
for this program will provide for each State including the District of
Columbia and the American Indian Consortium and territories to sustain
and expand State service delivery; and to expand the use of the grant
funds to pay for such services as Information & Referral (I&R), systems
coordination and other necessary services and supports identified by
the State. This year, we respectfully request increased funding in the
amount of $12,000,000 for an additional 20 State grants, which would
expand the total number of State grants to 44 bringing the total State
grant allocation to just over $19,000,000.
Similarly, the TBI P&A Program currently provides funding to all
State P&A systems for purposes of protecting the legal and human rights
of individuals with TBI. State P&As provide a wide range of activities
including training in self-advocacy, outreach, information & referral
and legal assistance to people residing in nursing homes, to returning
military seeking veterans benefits, and students who need educational
services. We request $6,000,000 be allocated to the TBI P&A program to
allow them to serve more individuals in each State.
Effective Protection and Advocacy services for people with
traumatic brain injury are needed to help reduce government
expenditures and increase productivity, independence, and community
integration. However, advocates must possess specialized skills, and
their work is often time-intensive. An increased appropriation in this
area would ensure that each P&A can move towards providing a
significant PATBI program with appropriate staff time and expertise.
CDC.--National Injury Center--$10 million (+ $5 million) for the
Centers for Disease Control and Prevention TBI Registries and
Surveillance, Brain Injury Acute Care Guidelines, Prevention and
National Public Education/Awareness and the National Concussion
Surveillance System.
The Centers for Disease Control and Prevention's National Injury
Center is responsible for assessing the incidence and prevalence of TBI
in the United States. The CDC estimates that 2.8 million TBIs occur
each year and 5.3 million Americans live with a life-long disability as
a result of TBI. The TBI Act as amended in 2018 requires the CDC to
coordinate with the Departments of Defense and Veterans Affairs to
include the number of TBIs occurring in the military. This coordination
will likely increase CDC's estimate of the number of Americans
sustaining TBI and living with the consequences.
CDC also funds States for TBI registries, creates and disseminates
public and professional educational materials, for families, caregivers
and medical personnel, and has recently collaborated with the National
Football League and National Hockey League to improve awareness of the
incidence of concussion in sports. CDC plays a leading role in helping
standardize evidence based guidelines for the management of TBI and $1
million of this request would go to fund CDC's work in this area.
In 2013, the National Academies of Sciences, Engineering, and
Medicine (formerly known as the Institute of Medicine, or the IOM)
issued a report calling on the CDC to establish a surveillance system
that would capture a rich set of data on sports- and recreation-related
concussions among 5-21 year olds that otherwise would not be available.
To meet this goal, we request an increase of $5 million in the CDC
budget to establish and oversee a national surveillance system to
accurately determine the incidence of concussions, particularly among
the most vulnerable of Americans--our children and youth. In the 2018
Reauthorization of the TBI Act, language was included authorizing CDC
to create a National Concussion Surveillance System. Also, in the
President's fiscal year 2017 budget, a $5 million increase was included
for the Centers for Disease Control and Prevention (CDC) Injury
Prevention and Control Center to develop sports concussion surveillance
to accurately determine the incidence of sports related concussions
among youth ages 5-21.
NIDILRR TBI Model Systems of Care.--Funding for the TBI Model
Systems in the Administration for Community Living is urgently needed
to ensure that the Nation's valuable TBI research capacity is not
diminished, and to maintain and build upon the 16 TBI Model Systems
research centers around the country.
The TBI Model Systems of Care represents an already existing vital
national network of expertise and research in the field of TBI, and
weakening this program would have resounding effects on both military
and civilian populations. The TBI Model Systems of Care is the only
source of non-proprietary longitudinal data on what happens to people
with brain injury. They are a key source of evidence-based medicine,
and serve as a ``proving ground'' for future research.
In order to address TBI as a chronic condition, Congress should
increase funding in fiscal year 2020 for NIDILRR's TBI Model Systems of
Care program to add one new Collaborative Research Project and increase
the number of centers from 16 to 18. In addition, given the national
importance of this research program, the TBI Model Systems of Care
should receive ``line-item'' status within the broader NIDILRR budget.
Over the next 5 years, BIAA requests increased funding by $15 million
to expand the TBI Model Systems program:
--Increase the number of multicenter TBI Model Systems
Collaborative Research projects from one to three, each
with an annual budget of $1 million;
--Increase the number of competitively funded centers from 16 to 18
while increasing the per center support by $200,000; and
--Increase funding for the National Data and Statistical Center by
$100,000 annually to allow all participants to be followed
over their lifetime.
In addition, we respectfully request an increase of $4 million to
the NIDILRR budget to continue to improve rehabilitation research.
We ask that you consider favorably these requests for the
Administration for Community Living, the CDC, and the NIDILRR's TBI
Model Systems of Care to further data collection, increase public
awareness, improve medical care, assist States in coordinating
services, protect the rights of persons with TBI, and bolster vital
research.
If you wish any additional information, please contact Amy Colberg,
director of government affairs at [email protected]. Thank you for
your continued support of individuals with brain injury and their
families.
______
Prepared Statement of the Bureau of Labor Statistics
Chairman Blunt, Ranking Member Murray, and members of the
subcommittee, thank you for taking the time to consider my testimony on
behalf of the Bureau of Labor Statistics. I speak to you as the Chair
of the Friends of the Bureau of Labor Statistics (BLS), and as a former
commissioner of BLS, regarding the fiscal year 2020 Appropriation for
that agency. I urge you to provide an important efficiency-enhancing
investment in America's data infrastructure by substantially increasing
funding for BLS.
Accurate, timely, and readily available statistics are an essential
public good in a free enterprise economy. Good statistics help private
entities and governments make better decisions and investments, while
bad or missing statistics can undermine efficiency in private markets
and lead to bad choices that waste taxpayer dollars. Federal investment
in the agencies that gather the most essential data for America's
economic and social wellbeing have flatlined, and we are funding our
Federal data infrastructure at irresponsibly low levels. The additional
funding provided for BLS in fiscal year 2019 was very helpful, but we
must increase the financial support of BLS to maintain American's
position as the world's leading economy, and to advance the wellbeing
of our children, families, businesses, and communities.
Funding BLS is an investment in efficient government. Public
officials and policymakers need reliable data and tools to advance
sound and responsible policies. As a producer of gold-standard data,
BLS has a long history of independence and impartiality. Since its
inception in 1884, BLS Commissioners have always supported the
objective role of the agency. BLS follows all of the Office of
Management and Budget directives to adhere to the objective
presentation of facts, as well as explicitly protecting data integrity
and transparency with respect to its methodologies and practices.
When urban and rural communities, families, and businesses of all
sizes use BLS data they fuel economic development. Business can find
the right workers, pay them competitive wages, while job seekers and
students can make career decisions that will lead the right workers to
the right employees.
For more than 125 years, BLS has produced vital information about
jobs and unemployment, wages, working conditions and prices that serve
as a key pillar of the data infrastructure of the Nation.
The increase in funding BLS received in fiscal year 2019 was
beneficial, but cannot alone reverse nearly a decade of flat funding.
BLS's purchasing power has fallen by nearly 14 percent since 2009. BLS
has taken many steps to implement cost-saving measures to make the most
of its budget. Currently, BLS is exploring options that include
centralizing more data collection, moving to a multi-year sampling and
collection protocols, using a combination of collected and modeled
data, expanding web scraping techniques and autocoding. Even though
these efforts have gone a long way, the current level of funding is not
sustainable, and means BLS cannot adequately innovate and rise to new
challenges in understanding our changing economy.
First, BLS cannot devote enough staff, data purchases, IT hardware
and software to expand use of big data and to fully cover emerging
economic trends, including the growing service sectors and the gig and
digital economies. Our national data infrastructure continues to
measure the manufacturing-based economy of the 20th century, often not
registering the major transformations of recent decades and delaying
implementation of modern ``big-data'' approaches that can reduce
response burden and improve statistics. Without renewed investment in
BLS, we all will be forced to address key economic issues with
insufficient or outmoded data, which could result in costly policy or
investment missteps. That poses serious risks to our workforce, our
economy, and our society.
Second, short staffing risks serious errors or last-minute delays
in major statistical releases. Less training, outdated equipment and
software, and fewer back-ups raise risks from mistakes and unforeseen
events. And these mistakes can be costly. A mistake of just 0.1 percent
in the CPI would result in an over- (or under-) payment of almost $1
billion in annual Social Security benefits. Financial markets could
also be roiled by sudden delays or large errors in jobs or inflation
data releases. BLS staff works hard to make sure this does not happen,
but the risk is growing.
With a return to full funding, BLS could reduce the risk of
operational failure, accomplish many data improvements, and help ensure
the wellbeing of American families.
Some key examples include:
--Measure the Gig Economy. The May 2017 fielding of the CPS Continent
and Alternative Employment Arrangement Supplement (CWS) was
funding as a one-time reimbursable by the DOL Chief Evaluation
Office. Without continual funding, the BLS cannot residing the
questions in the CWS and other supplements to track emerging
trends in the labor market. In addition, the employer
perspective (incentives, type and degree of use) is still
missing.
--Modernize the Consumer Expenditure Survey. BLS is redesigning the
Consumer Expenditure Survey to take advantage of new
technologies that reduce the high respondent burden and improve
data quality.
--Measure employer-provided training. BLS last measured employer-
provided training in 1995. Since then, our country has had no
gold-standard information on whether employers are providing
more or less training than in the past. What sort of training
to they provide? To whom? How do they provide it? Gathering
this type of data can help policy makers, educators and
businesses understand and address our national skills needs.
--Increase capacity for computationally intensive automation. Funds
to enhance BLS hardware, software and expertise would advance
BLS's ability to produce more detailed and improved products
from its existing programs and administrative data. This
capacity would increase the use of autocoding (to improve data
quality and reduce reporting burden) and data matching,
regional modeling, and merging.
--Design surveys to answer new questions about our economy. BLS seeks
to add the capacity to field survey modules that can provide
gold-standard answers to urgent questions as they arise. These
modules will address key questions as they arise, such as who
employs gig workers, impacts of capital constraints, effects of
natural disasters, etc.
Good data fuels the national economy and empowers good
decisionmaking. It is essential to any effort to advance the well-being
of our children as they prepare for the labor market, for families as
they plan for their living arrangements, for small and large business
owners as they plan for their future, and for policymakers as they
evaluate programs and policies.
The statistics collected by BLS provide a stable foundation for
decisionmaking. Every community, including businesses both large and
small, relies on Federal data to fuel economic development. BLS's user
metrics attest to the widespread usefulness of their data. The BLS
website averages 19 million page views per month, as people access more
than 107 million BLS data series.
Re-investing in BLS means the agency will continue to gather,
analyze and share the trustworthy data needed for the evidence-based
decisions that will move our economy forward. Please provide BLS with
$655 million in fiscal year 2020 so that America's economy can work at
its best for all Americans.
Thank you for your time and consideration of this important agency.
[This statement was submitted by Erica L. Groshen, Cornell
University--ILR, Chair, Friends of the Bureau of Labor Statistics.]
______
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 $100 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 2020 funding
level of $310 million, CDC will be able to effectively address the
rapid escalation of youth e-cigarette use, expand its highly effective
Tips from Former Smokers public education campaign, and aggressively
increase its efforts to assist populations and regions of the country
with disproportionately high rates of tobacco use and tobacco-related
disease and premature death.
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.\1\ 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.\2\ Smoking
shortens the life of a smoker by more than a decade and increases the
risk of early death much more than other risk factors.\3\
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\1\ 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/.
\2\ 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.
\3\ HHS, The Health Consequences of Smoking--50 Years of Progress:
A Report of the Surgeon General, 2014.
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Funding for CDC's Office on Smoking and Health has remained
relatively flat since fiscal year 2014, not even keeping up with
inflation, and is modest when compared to the estimated $170 billion in
annual healthcare costs attributable to tobacco use.\4\ Already forced
to stretch its limited funding, OSH now faces a new challenge: soaring
rates of e-cigarette use by youth. OSH needs additional resources to
address this new threat to public health while continuing to reduce
other forms of tobacco use, especially among populations
disproportionately harmed by tobacco products.
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\4\ Xu, X et al., ``Annual Healthcare Spending Attributable to
Cigarette Smoking: An Update,'' American Journal of Preventive
Medicine, 2014.
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Youth use of e-cigarettes skyrocketed throughout the U.S. in 2018--
increasing by 78 percent among high school students and by 48 percent
among middle school students in just 1 year. An estimated 20.8 percent
of high school students (over 3 million students) were current users of
e-cigarettes last year.\5\ The FDA Commissioner and Surgeon General
have both called youth e-cigarette use an ``epidemic.'' The spike in
youth e-cigarette use has resulted in the highest use of tobacco
products by high school students in 14 years with more than 1 in 4 high
school students using a tobacco product in 2018.\6\ Further, as e-
cigarette use has risen, progress in reducing youth cigarette use has
stalled. There has been no significant change in the high school
smoking rate since 2014, and the most recent CDC data from 2018 show a
possible slight increase in cigarette smoking.\7\ Alarmingly, research
shows that e-cigarette use increases the risk of smoking cigarettes.\8\
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\5\ Cullen, K, et al., ``Use of Electronic Cigarettes and Any
Tobacco Product Among Middle and High School Students--United States,
2011-2018,'' Morbidity & Mortality Weekly Report, 67(45): 1276-1277,
November 16, 2018.
\6\ Gentzke, Andrea S., et al., ``Vital Signs: Tobacco Product Use
Among Middle and High School Students--United States, 2011-2018Use of
Electronic Cigarettes and Any Tobacco Product Among Middle and High
School Students--United States, 2011-2018,'' Morbidity & Mortality
Weekly Report, 68: 1-8, February 11, 2019.
\7\ Gentzke, Andrea S., et al., ``Vital Signs: Tobacco Product Use
Among Middle and High School Students--United States, 2011-2018Use of
Electronic Cigarettes and Any Tobacco Product Among Middle and High
School Students--United States, 2011-2018,'' Morbidity & Mortality
Weekly Report, 68: 1-8, February 11, 2019.
\8\ 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; 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.
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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.\9\ 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 2015, the campaign motivated over nine million smokers
to make a quit attempt, helped over 500,000 smokers successfully quit,
and saved at least 50,000 people from premature death.\10\ The campaign
is considered a ``best buy'' in public health, costing just $393 for
each year of life saved.\11\
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\9\ 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).
\10\ Murphy-Hoefer, Rebecca, ``Impact of the Tips from Former
Smokers Campaign on Population-Level Smoking Cessation 2012-2015,''
Preventing Chronic Disease Volume 15, E71, May 2018; Centers for
Disease Control and Prevention (CDC), fiscal year 2017 Justification of
Estimates for Appropriations Committees http://www.cdc.gov/budget/
documents/fy2017/fy-2017-cdc-congressional-justification.pdf.
\11\ Xu, Xin, et al., ``Cost-Effectiveness Analysis of the First
federally Funded Antismoking Campaign,'' American Journal of Preventive
Medicine, 2014.
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The Tips campaign has been enormously successful despite being on
air for only part of the year. In its first 2 years (2012-2013), the
campaign ran for 12 and 16 weeks, respectively. In 2018, the campaign
ran for 25 weeks. 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.\12\
---------------------------------------------------------------------------
\12\ 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).
---------------------------------------------------------------------------
It is also important to address the growing disparity in tobacco
use. 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.\13\ Despite initiating smoking later
in life than whites, African Americans suffer from significantly higher
rates of disease and death caused by smoking.\14\
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\13\ CDC, ``Tobacco Product Use Among Adults--United States,
2017,'' MMWR 67(44): 1225-1232, November 9, 2018.
\14\ 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.
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With additional funding, CDC could provide targeted assistance to
groups disproportionately harmed by tobacco use. By collaborating with
State and local health departments and other community organizations,
CDC could implement prevention and cessation programs tailored to
resonate with and serve specific groups.
Given the harm that tobacco continues to inflict on the Nation's
health, we were disappointed that the President's fiscal year 2020
budget request would eliminate the CDC's Office on Smoking and Health.
While the budget proposes funding for a new block grant to States for
chronic disease prevention, it does not require any of the funding to
be spent on tobacco prevention and cessation activities and reduces
overall funding for chronic disease prevention. This lack of funds
would drastically undermine CDC's efforts to prevent youth from
starting to use tobacco and to help adults to quit.
We urge the Subcommittee to increase funding for CDC's Office on
Smoking and Health to $310 million. An additional $100 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.
[This statement was submitted by Matthew L. Myers, President,
Campaign for Tobacco-Free Kids.]
______
Prepared Statement of Cannonball Kids' cancer Foundation
Chairman Blunt, Ranking Member Murray, and members of the
Subcommittee thank you for your dedication to public health, and your
continued efforts to appropriately invest in life-saving research to
keep our Nation's health progressing forward. My name is Kelly King,
and I am the Research Director at Cannonball Kids' cancer, a nonprofit
foundation focused on funding innovative and accessible research for
children fighting cancer and educating for change. On behalf of our
foundation, the 40,000 children in the United States who are actively
in treatment for pediatric cancers and the nearly 2,500 families who
will lose a child or adolescent to cancer in 2019, I am requesting that
you continue to make pediatric cancer research a greater national
priority. Specifically, I am asking the Subcommittee to ensure adequate
funding for the NIH by rejecting the President's budget for this
agency, and then directing the NIH to specifically fund the deadliest
forms of childhood cancers with $25 million total in fiscal year 2020
funds appropriated to these line items.
I was privileged and honored to personally attend the fiscal year
2019 budget hearing for the National Institutes of Health of your
sister Subcommittee. While I wasn't able to attend either hearing in
person this year, I was able to view video coverage of both remotely.
Through those hearings, I gained greater appreciation for some of our
Nation's top priorities in healthcare, such as data aggregation,
Alzheimer's, and internal controls at the NIH. I witnessed how integral
this Subcommittee is to the upward trend of funding to the NIH and I
respect your commitment to preserving that momentum, in spite of the
President's recommendations for fiscal year 2020. It was also
encouraging to hear childhood cancer mentioned by both Senator Moran
and Senator Baldwin during their questioning. And, to witness Douglas
Lowy, MD, Acting Director of the National Cancer Institute provide such
a poignant response to Senator Moran.
As a result, I would like to commend the NIH and the Subcommittee
for prioritizing childhood cancer this year! I believe that any mention
of pediatric cancer during a Federal budget hearing is a step toward
eradicating this horrific disease. So, thank you! However, these
sentiments still must be translated to action, and there is much work
to be done. That's why I'm submitting this written testimony. As the
Subcommittee prepares its budget recommendations for fiscal year 2020,
I want to ensure the members are acutely aware of the realities and
statistics surrounding kids' cancers. I also intend to call your
attention to what I believe was an omission in a previous bill that
should be appropriately amended and financially supported.
The Recalcitrant Cancer Research Act: This Act of 2012, which
President Obama signed into law in 2013 as part of the National Defense
Authorization Act, defines recalcitrant cancers as those having a 5-
year relative survival rate of less than 50 percent. It was championed
by the Pancreatic Cancer Action Network (PanCAN) and calls on the
National Cancer Institute (NCI) to develop scientific frameworks for
the following cancers: pancreatic, lung, brain, esophageal, liver,
ovarian, and stomach. The PanCAN website states: ``When fully
implemented, the statute will provide that much-needed strategic
guidance and will also provide the accountability and congressional
oversight to ensure that the resulting research stays on target.''
However, no pediatric or adolescent cancers were named in the Act,
nor have they received this type of individualized strategic thought
and funding. As Dr. Collins noted in his remarks during the House
hearing, ``Although substantial progress has been made in the treatment
of several types of childhood cancer, progress against other types has
been limited.'' There are at least eight types of kids' cancers that
have a survival rate of less than 50 percent including: anaplastic
astrocytoma, diffuse intrinsic pontine glioma, glioblastoma, juvenile
myelomonocytic leukemia, high-risk neuroblastoma, recurrent
osteosarcoma, rhabdomyosarcoma, and diffuse anaplastic Wilms tumors.
National Prioritization in Action: With other diseases, national
prioritization and subsequent designated Federal funding have helped
our country make great strides in research, leading to revolutionary
treatments and cures. Diabetes, specifically in the pediatric
population, was discussed during the fiscal year 2019 hearing I
attended. Before the discovery of insulin in the 1920s, children with
diabetes rarely lived longer than 1 year. They also suffered side
effects from their disease, such as blindness, loss of limbs, stroke,
heart attacks, and kidney failure. Diabetes may not yet be curable and
still requires daily maintenance, but only 1 percent of childhood
deaths are now related to diabetes. And, as Dr. Collins mentioned, the
NIH's prioritization of research for Sickle Cell Disease and Cystic
Fibrosis have finally produced some significant gains in treating these
diseases with clinical trials that are having phenomenal results!
For pancreatic cancer, the primary impetus for the Recalcitrant
Cancer Research Act, there has been a 100 percent increase in median
overall survival from Phase III clinical trials, a 900 percent increase
in National Cancer Institute funding, and a 600 percent increase in the
number of NCI-funded investigators studying pancreatic cancer, all
since 1999. It's safe to say that the Recalcitrant Cancer Research Act
has had a major, positive impact on these numbers, and that it will
continue to help prioritize funding pancreatic cancer research,
resulting in continued increases in survivorship.
Our Call to Congress: The Recalcitrant Cancers Research Act also
``provides the NCI director with the authority to develop frameworks
for other deadly cancers.'' This means any cancers added to the Act's
list of ``Recalcitrant Cancers'' would also receive strategic guidance,
added accountability, and congressional oversight. We've called on
Congress to do just this!
I was on Capitol Hill with several of my colleagues in early March.
During our visit, we were able to speak with 11 congressional offices,
including seven in the Senate and four of whom sit on this very
committee. Every one of those meetings was promising and productive as
we explained the gap in the Recalcitrant Cancer Research Act. We
committed to these offices that we would draft report language, asking
Congress to urge the NCI to incorporate the deadliest forms of
childhood cancers into the Recalcitrant Cancers category and to place a
high priority on researching these cancers. This has since been
completed and formally submitted to each of those offices.
The same language was also submitted to the House Labor, HHS, and
Education Appropriations Subcommittee by my local Representative
Stephanie Murphy and was adopted on May 8, 2019. Ms. Murphy has vowed
to make this effort a high priority for her office and continue
championing it for us. This progress is seen as a momentous victory by
our team and for our cause. However, the language still must be adopted
by your Subcommittee and translated to action.
How You Can Help: Now, we are respectfully asking the Subcommittee
to ensure adequate funding for the NCI, with clear direction to the NCI
Director to allocate a portion to these deadliest pediatric cancers. We
believe this will give them the priority they deserve and help fiscally
support the strategic plans that will be devised once they are
classified as a Recalcitrant Cancer.
There has been much discussion about the Administration's budget
providing $50 million for a data initiative that will be used to
aggregate data and create a ``federated, comprehensive, and shared
resource to support childhood cancer research.'' This is honorable and
necessary. So is the Childhood Cancer STAR Act that was passed and
authorized last year, which appropriately requires funding for fiscal
year 2020. However, a data bank is a long-term, complicated process
that is only part of the steps needed to support the goal of developing
new, more effective, and safer treatments for childhood cancers. We
cannot wait on data to make treatment advances for our children. We
should also be simultaneously investing additional funding into basic
research and clinical trials for all types of pediatric cancer, but
particularly those that should be considered Recalcitrant.
A Public Health Crisis: Gun violence remains a heated topic of
discussion in our country. Every day, four children are deliberately
killed with guns. This is unimaginable and tragic, but shockingly, this
number is LESS than the number of deaths per day from pediatric cancer!
Cancer continues to be the number one killer by disease of children and
adolescents under the age of 19 in the U.S. In fact, it accounts for
more deaths than all other childhood diseases combined! The average
loss of life for a pediatric cancer patient is 71 years. And, our
children are being treated with toxic chemotherapies designed for
adults. Yet, as Dr. Lowy explained during the hearing, ``One of the
most important things to understand is that children who have cancer
are not just small people who have adult cancer. But, childhood cancer
is qualitatively different. Whereas adult cancer has many mutations,
often there just are a few mutations that arise in children with
cancer. In addition, while there is a tremendous amount of interest in
cancer treatment for adult cancer, there is less involvement in the
private sector. So the NCI has a particular obligation to do research
in this area.'' However, the news media and the Subcommittee have not
expressed outrage regarding pediatric cancer in the way they have for
gun violence, nor have they called it a public health emergency. But, I
will! This is a public health crisis and if the Appropriations
Committee can designate funds specifically for gun violence research,
then it also has the means to further support research into a disease
killing more children each and every day. As the chairwoman said, ``For
all of our greatest health crises, we need our great health agencies to
be fully involved in finding solutions.''
Pediatric Cancer Survivorship: For those who survive childhood
cancer, the Subcommittee should consider that survivorship for kids is
measured the same as for adults. Five years from diagnosis is
considered ``surviving'' for children. We often talk about children as
young as 6 years old as ``survivors.'' And if they then go on to die at
age seven from their diagnosis, or the effects of their treatment, they
are still classified as a survivor. Calling a deceased 7 year old a
``survivor'' hardly seems logical!
Additionally, these ``survivors'' will die earlier than their
peers. As many as 95 percent of childhood cancer survivors are likely
to experience at least one late effect of treatment, with one-third
suffering life-threatening and chronic side effects and another third
suffering moderate to severe health problems. Because kids with cancer
are currently treated with drugs that were developed several decades
ago for adults, many have substantial toxic side effects and research
documents that they are very damaging to children's physical and
intellectual development, leading to a diminished quality of life.
Finally, the Subcommittee should note that the incidence of
invasive pediatric cancers is up 35 percent since 1975. According to
the NCI, about 16,000 children and adolescents were diagnosed with
cancer in 2018 (that is two classrooms full of students every school
day).
It's Personal: There are more facts and statistics I could use to
support my request. However, what matters most is that behind every
statistic is a family who has been impacted by pediatric cancer. Many
of the issues and concerns raised by the Subcommittee members during
the hearing I attended were a result of their personal experiences or
interactions with family members and constituents. I'd like to help
make childhood cancer personal to you. My 3-year-old son, Nolan, died
on April 1, 2017, from high-risk, Stage IV hepatoblastoma. After 15
months of surgeries and treatments, we were told there were no clinical
trials available, and we were left to face our only option of
palliative care. However, before we could begin navigating this ``wait
to die'' approach, Nolan's heart stopped unexpectedly as a result of
the toxicity from the 35-year-old chemotherapy drugs that failed to
save him. Hepatoblastoma has a 20 percent survival rate when the
disease has metastasized, yet it receives no dedicated NIH funding and
there are no available treatment options for relapsed hepatoblastoma.
Summary: Ultimately, I commend the NCI, the Subcommittee, and
Congress for their support of research into ``recalcitrant cancers,''
the STAR Act, and potentially, the President's $50 million data
initiative. But, I remain concerned that even with these efforts, the
deadliest childhood cancers will remain under-researched and extremely
difficult to treat, and no one among us should accept this as the
status quo in the United States in 2019. We can do better, and one way
we can begin to do so is by incorporating the deadliest kids' cancers
into the Recalcitrant Cancer Research Act and then allocating
appropriate funding to these cancers. I strongly urge the Subcommittee
to appropriate $25 million in fiscal year 2020 funds to basic science
and clinical trials for the deadliest forms of pediatric cancers. It
may be too late for my son, Nolan, but I refuse to accept the past as
the only course of action for the future.
[This statement was submitted by Kelly A. King, Research Director,
Cannonball Kids' cancer Foundation.]
______
Prepared Statement of CAST
CAST is a non-profit organization that uses educational technology
coupled with expertise in the learning sciences to ensure all learners
can and do reach their full potential. Our primary lever for change is
Universal Design for Learning (UDL), a framework pioneered at CAST that
harnesses technology and instructional practices to remove barriers to
learning in digital as well as physical settings. Our aim is to create
a level playing field where all learners have equitable opportunities
to succeed. UDL encourages the design of flexible learning environments
that anticipate learner variability and provide alternative paths to
success. UDL acknowledges that variation across learners is the norm
rather than the exception regardless of an individual's age or
disability status.
In fiscal year 2020, CAST requests the following:
--U.S. Department of Education (ED).--Fund all education programs at
no less than the funding levels provided in the House fiscal
year 2020 bill and prioritize UDL as a necessary component of
all competitive grants made by ED.
--U.S. Department of Labor (DOL).--Require all Federal investments in
training and employment to incorporate UDL as defined in
section 103(a)(24) of the Higher Education Act,\1\ and as
referenced and endorsed as a best practice in the National
Technology Plans of 2010 and 2016, as well as the National Ed
Tech Developer's Guide of 2015.\2\
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\1\ Sec. 103(a)(24), PL 110-315, Universal Design for Learning
means ``... a scientifically valid framework for guiding educational
practice that--(A) provides flexibility in the ways information is
presented, in the ways students respond or demonstrate knowledge and
skills, and in the ways students are engaged; and (B) reduces barriers
in instruction, provides appropriate accommodations, supports, and
challenges, and maintains high achievement expectations for all
students, including students with disabilities and students who are
limited English proficient.''
\2\ See http://www.cast.org/whats-new/news/2016/udl-in-the-
essa.html#.Wob36WbGzqQ.
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UDL's long history of striving for equity for all learners makes
this level of investment logical. For nearly 30 years, UDL research,
design and implementation has viewed universally designed technology
and flexible digital materials as key components of instruction and
interventions. The term ``universally designed'' (UD) refers to the
design of built environments and products that make the world more
accessible to individuals with disabilities. Speakerphones, curb cuts,
and close-captioned television are all examples of universally-designed
products-innovations that were originally developed to ensure access
and use for individuals with disabilities but that benefit a variety of
users. Universal Design for Learning extends the concept of UD to
education and employment training by applying recent advances in the
understanding of how the brain perceives and processes information to
the design of curricula, instructional methodologies, assessment
practices, and technologies and materials that can accommodate the
widely variable abilities and needs of diverse learners.
In its 30-year history, CAST has brought UDL into K-12 schools,
postsecondary settings and increasingly into career and technical
education and the workplace. CAST's work is grounded in the vision of
creating a world where ``learning has no limits.'' CAST works in
partnership with other organizations that also focus on improving
access to and inclusion in K-12 schools, colleges, apprenticeships and
employment. Research, development, and implementation of UDL is
supported by multiple Federal agencies, State education systems, school
districts, federally funded education and labor programs and private
foundations. The Senate Appropriations Subcommittee plays a significant
role in ensuring that programs through Title II of the Every Student
Succeeds Act; the Higher Education Act, National Activities under the
Individuals with Disabilities Education Act, State funding for the
Strengthening Career and Technical Education for the 21st Century Act;
Title II of the Higher Education Opportunity Act (HEOA); and Training
and Employment for the DOL receive important funding in support of UDL.
There is a history of such funding in past appropriations bills.
Substantial Federal investments in UDL began in the late 1990's and
have steadily expanded. Over $150 million has been invested via ED's
competitive grants programs to ensure that flexible and accessible
learning materials are made available to all the Nation's K-12
students, and UDL has emerged as a key element in Federal education
policy.\3\ The Federal Government's investment in UDL is currently at
work in improving universal design for people of all abilities in
education. Recently, CAST's National Center on Accessible Educational
Materials (AEM Center) was selected as the 2019 recipient of the
Exemplary Program Award in Educational Technology by the American
Council on Rural Special Education. The AEM Center provides resources
and technical assistance to educators, parents, students, publishers,
conversion houses, accessible media producers, and others interested in
providing accessible education materials including open educational
resources (OER) consistent with Federal requirements under the National
Instructional Materials Accessibility Standard (NIMAS). CAST is helping
teachers, administrators, assistive technology specialists, and
curriculum creators at little or no-cost to improve and customize
curricula to improve student access to materials and interoperability
with student data, assistive technology and content management systems.
This work significantly impacts access to education in K-16 settings.
---------------------------------------------------------------------------
\3\ See: PL 110-315, PL 114-95.
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Use of UDL in workforce development also continues to grow. With
the pending requirement for States to develop and submit their CTE
plans to ED, CAST is collaborating with the National Alliance for
Partnerships in Equity by serving on their steering committee to advise
on an initiative to broaden participation in STEM and CTE. In
partnership with the National Science Foundation, six intermountain
States will be brought together to scale up the use of evidence-based
practices already shown to improve equity in CTE and increase access to
STEM career training. Additionally, UDL is required in online and
technology-enabled courses developed by grantees of the $2 billion
Trade Adjustment Assistance Community College & Career Training grant
program from DOL and is a foundational element of large-scale
employment training initiatives like YouthBuild and Jobs for the
Future. CAST's UDL in Higher Education \4\ initiative prompts faculty
designing career pathway training to plan for ways in which industry
partners and instructors can collaborate on course development to
create authentic, engaging scenarios so students learn skills in the
context of a profession. CAST is also part of efforts to train CTE
faculty in the application of UDL to help their students achieve
educational and career goals.
---------------------------------------------------------------------------
\4\ See http://udloncampus.cast.org/home#.Wte8tYjwY2w.
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The principle of equity for all learners is a major component of
this success. As a flexible approach to addressing learner variability,
UDL is organized around three core principles: (1) multiple means of
representation, (2) multiple means of expression and action, and (3)
multiple means of engagement. The UDL core principles consider the
variability of all learners-including learners who were formerly
relegated to the margins of our educational systems but now are
recognized as part of the predictable spectrum of variation among
individuals. These principles guide the design of learning environments
that help lower barriers for diverse learners while maintaining high
achievement expectations.
Powerful digital technologies applied using UDL principles enable
easier and more effective customization of curricula for learners of
any age or learning challenge. Advances in technology and the learning
sciences have made ``on-the-fly'' individualization of curricula
possible in practical, cost-effective ways, and many of these
technologies have built-in supports, scaffolds, and challenges to help
learners understand, navigate, and engage with the learning
environment. While new technologies are not the only means of
implementing UDL, their omnipresent and global use can free instructors
to be creative and resourceful in designing flexible learning
environments and providing additional challenges for advanced students
or additional support to those that are struggling.
Increasingly, education and training programs of every level and
type are incorporating significant digital and online components. Yet,
despite the promise of flexibility, customized, one-off learning
solutions, and anywhere/anytime educational opportunity often
associated with digital learning, the reality is that the experience
for many of today's learners has been at best underwhelming, and at
worst detrimental. Leveraging the UDL framework is essential to
mitigating the current impact of digital learning--especially for
learners with challenges--whether they be based in poverty, language,
disability, the aging process or something else. The population of
digital learners that requires such training is predictably diverse and
every federally supported training program must plan for that to ensure
the effectiveness of these investments.
It's now time to bring UDL into the discussions focused on funding
the Federal laws that: support people living and working with language
barriers, low literacy or disability, including those who may
experience disability as they age; and, to improve the workplace for
any individual who may need accommodation so they can continue working.
Why? Because, as the data show, one of modern science's greatest
achievements is longevity--the unprecedented length of human lives
today; \5\ indeed, the average global life expectancy continues to
climb.\6\ Together, these statistics are compelling; however, they are
made even more so when combined with these facts:
---------------------------------------------------------------------------
\5\ D. Agarwal, ``The Longevity Dividend: Work in an Era of 100-
Year Lives,'' Deloitte Insights, March 28, 2018.
\6\ World Bank, ``Life Expectancy at Birth (Total Years),'' 2017.
Retrieved at: https://data.worldbank.org/indicator/SP.DYN.LE00.IN.
---------------------------------------------------------------------------
--One in five workers today is 55 or older; by 2024, that number will
be one in four; \7\
---------------------------------------------------------------------------
\7\ M. Toossi, E. Torpey, ``Older workers: Labor force trends and
career options,'' Career Outlook, U.S. Bureau of Labor Statistics, May
2017. Retrieved at: https://www.bls.gov/careeroutlook/2017/article/
older-workers.htm.
---------------------------------------------------------------------------
--By 2024, nearly 25 percent of the labor force will include people
who will be ages 55 and older-of whom about 13 million are
expected to be ages 65 and older; \8\ and,
---------------------------------------------------------------------------
\8\ Ibid.
---------------------------------------------------------------------------
--More than 80 percent of U.S. employers believe that workers aged 50
and more are a valuable resource and can offer knowledge,
wisdom, and life experience.\9\
---------------------------------------------------------------------------
\9\ Transamerica Center for Retirement Studies, Baby boomer workers
are revolutionizing retirement: Are they and their employers ready?,
December 2014, p. 21.
---------------------------------------------------------------------------
We also know that because people are living and working longer
there is a desire to live and work independently for as long as
possible.
The changing demographics in the U.S. make the Subcommittee's
funding decisions incredibly important. Whether people continue to work
full or part-time or are spending their time at home, UDL can play an
integral role in generating the innovative, research-based solutions
that individuals and families need to ensure the continuation of
lifelong learning and productivity for aging adults, regardless of
setting. Investments in UDL research-to-practice initiatives for both
education and employment are essential.
It is imperative that all learners, including first-time career
seekers and adults desiring new opportunities, have access to workforce
development and career pathway strategies and programs that are
designed with the variability of their learning in mind. Continuing to
invest in educational innovations that incorporate effective
implementation of UDL while prioritizing the need to include UDL as
part of the infrastructure of workforce and CTE faculty training makes
sense. Anyone seeking new opportunities to expand their knowledge or
improve their status of living or level of independence must have
access to workforce development, career pathway strategies, and
programs that are designed from the beginning with the variability of
how their learning needs and potential living situation in mind.
Beginning to promote investments in research-based innovations and
technologies that incorporate effective use of UDL at work and at home
simply makes sense.
CAST appreciates the opportunity to provide recommendations to
fiscal year 2020. We urge the Subcommittee to make the following
investment in UDL for all learners: (1) ED--fund all education programs
at no less than the funding levels provided in the House fiscal year
2020 bill and prioritize UDL as a necessary component of all
competitive grants made by ED. (2) DOL--require that all Federal
investments in training and employment corporate UDL as defined in
section 103(a)(24) of the HEA, and as referenced and endorsed as a best
practice in the National Technology Plans of 2010 and 2016, as well as
the National Ed Tech Developer's Guide of 2015.
______
Prepared Statement of the CDC Coalition
The CDC Coalition is a nonpartisan coalition of more than 140
organizations committed to strengthening our Nation's prevention
programs. We represent millions of public health workers, clinicians,
researchers, educators and citizens served by CDC programs. We believe
Congress should support CDC as an agency, not just its individual
programs. We are extremely pleased with the more than $8.22 billion
provided to CDC in the House fiscal year 2020 Labor, Health and Human
Services, and Education, and Related Agencies Appropriations bill. This
total includes a transfer of $225 million from the HHS Nonrecurring
Expenses Fund for one-time projects to improve CDC research and campus
infrastructure. We urge the Senate to match the House funding level for
CDC as you develop the Senate's fiscal year 2020 Labor, Health and
Human Services, and Education, and Related Agencies Appropriations
bill. We are grateful for the important increases provided for CDC
programs in fiscal year 2019 and urge Congress to continue efforts to
build upon these investments to strengthen all of CDC's programs. We
oppose any effort to repeal or cut the Prevention and Public Health
Fund which makes up more than 10 percent of CDC's budget and funds
critical public health and prevention programs.
CDC serves as the command center for the Nation's public health
defense system against emerging and reemerging infectious diseases.
From aiding in the surveillance, detection and prevention of the Zika
virus to playing a lead role in the control of Ebola in West Africa and
detecting and responding to cases in the U.S., to monitoring and
investigating disease outbreaks in the U.S., to pandemic flu
preparedness to combating antimicrobial resistance, CDC is the
Nation's--and the world's--expert resource and response center,
coordinating communications and action and serving as the laboratory
reference center for identifying, testing and characterizing potential
agents of biological, chemical and radiological terrorism, emerging
infectious diseases and other public health emergencies.
CDC serves as the lead agency for bioterrorism and other public
health emergency preparedness and response programs and must receive
sustained support for its preparedness programs. Given the challenges
of terrorism and disaster preparedness we urge you to provide adequate
funding for the Public Health Emergency Preparedness grants which
provide resources to our State and local health departments to help
them protect communities in the face of public health emergencies. We
urge you to provide adequate funding for CDC's infectious disease,
laboratory and emergency preparedness and response activities in order
to ensure we are prepared to tackle both ongoing challenges and other
public health challenges and emergencies that may likely arise during
the coming fiscal year.
Injuries are the leading causes of death for people ages 1-44.
Unintentional and violence-related injuries, such as older adult falls,
firearm injury, child maltreatment and sexual violence, account for
nearly 27 million emergency department visits each year. In 2013,
injury and violence cost the U.S. $671 billion in direct and indirect
medical costs. In 2017, opioids killed 46,700 individuals nationwide.
CDC provides States with resources for opioid overdose prevention
programs and to ensure that health providers to have the information
they need to improve opioid prescribing and prevent addiction and
abuse. In 2017, there were over 39,000 U.S. firearm-related fatalities.
Congress should provide CDC with dedicated funding for firearm
morbidity and mortality prevention research. The National Center for
Injury Prevention and Control must be adequately funded to conduct
research, prevent injuries, and help save lives.
In 2016, over 635,000 people in the U.S. died from heart disease,
the Nation's number one killer, accounting for about 23 percent of all
U.S. deaths. More males than females died of heart disease in 2016,
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
2016, over 142,000 people died of stroke, accounting for about one of
every 19 deaths. CDC's Heart Disease and Stroke Prevention Program,
WISEWOMAN, and Million Hearts work to improve cardiovascular health.
More than 1.7 million new cancer cases and over 600,000 deaths from
cancer are expected in 2019. In 2015 the direct medical costs of cancer
was $80.2 billion. The National Breast and Cervical Cancer Early
Detection Program helps millions of low-income, uninsured and medically
underserved women gain access to lifesaving breast and cervical cancer
screenings and provides a gateway to treatment upon diagnosis. The
Colorectal Cancer Control Program focuses on improving screening rates
among targeted, low-income populations aged 50-75 years in targeted
States and territories through evidence-based interventions using
partner health systems. CDC funds grants to all 50 States, DC, 7 Tribes
and Tribal organizations, and 7 U.S. territories and Pacific Island
jurisdictions to develop comprehensive cancer control plans, bringing
together public and private stakeholders to set priorities and
implement cancer prevention and control activities to address each
State's particular needs.
Cigarette smoking causes more than 480,000 deaths each year. CDC's
Office of Smoking and Health funds important programs and education
campaigns such as the Tips From Former Smokers campaign which has
already helped more than 500,000 individuals quit smoking and millions
more to make a serious quit attempt. We must continue to support this
and other vital programs to reduce the enormous health and economic
costs of tobacco use in the U.S.
Of the more than 30 million Americans living with diabetes, more
than 7 million cases are undiagnosed. Each year, about 1.5 million
people are newly diagnosed with diabetes. Diabetes is the leading cause
of kidney failure, nontraumatic lower-limb amputations, and new cases
of blindness among adults in the U.S. The total direct and indirect
costs associated with diabetes were $327 billion in 2017. We urge you
to provide adequate resources for the Division of Diabetes Translation
which funds critical diabetes prevention, surveillance and control
programs.
Obesity prevalence in the U.S. remains high. More than one-third of
adults are obese and 18.5 percent of children ages of 2 to 19 are
obese. Obesity, diet and inactivity are cross-cutting risk factors that
contribute significantly to heart disease, cancer, stroke and diabetes.
The Division of Nutrition, Physical Activity and Obesity funds programs
to encourage the consumption of fruits and vegetables, encourage
sufficient exercise and develop other habits of healthy nutrition and
physical activity and must be adequately funded.
Arthritis is the most common cause of disability in the U.S.,
striking more than 54 million Americans of all ages, races and
ethnicities. CDC's Arthritis Program helps address this growing public
health challenge and works to improve the quality of life for
individuals affected by arthritis and we urge you to support adequate
funding for the program.
CDC provides national leadership in helping control the HIV
epidemic by working with community, State, national, and international
partners in surveillance, research, prevention and evaluation
activities. CDC estimates that about 1.1 million Americans are living
with HIV with 15 percent undiagnosed. Prevention of HIV transmission is
the best defense against the AIDS epidemic. Sexually transmitted
diseases continue to be a significant public health problem in the U.S.
Nearly 20 million new infections occur each year. STDs, including HIV,
cost the U.S. healthcare system almost $16 billion annually.
The National Center for Health Statistics collects data on chronic
disease prevalence, health disparities, emergency room use, teen
pregnancy, infant mortality and causes of death. The health data
collected through the Behavioral Risk Factor Surveillance System, Youth
Risk Behavior Survey, Youth Tobacco Survey, National Vital Statistics
System, and National Health and Nutrition Examination Survey must be
adequately funded.
CDC's REACH program helps communities address serious disparities
in infant mortality, breast and cervical cancer, cardiovascular
disease, diabetes, HIV/AIDS and immunizations by supporting community-
based interventions and we urge the committee to provide continued
funding for these important activities.
CDC oversees immunization programs for children, adolescents and
adults, and is a global partner in the ongoing effort to eradicate
polio worldwide. Childhood immunizations provide one of the best
returns on investment of any public health program. For every dollar
spent on childhood vaccines to prevent thirteen diseases, more than $10
is saved in direct and indirect costs. Over the past 20 years, CDC
estimates childhood immunizations have prevented 732,000 deaths and 322
million illnesses. We urge you to provide adequate funding for the
Section 317 Immunization program. Congress must support efforts to stop
current vaccine-preventable disease outbreaks, including the current
measles outbreaks in several States, and prevent more from occurring.
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.
Programs within CDC's National Center for Environmental Health work
to control asthma, protect from threats associated with natural
disasters and climate change, reduce, monitor and track exposure to
lead and other environmental health hazards and ensure access to safe
and clean water. Increased funding for NCEH's environmental health
prevention activities will help reduce illness, disease, injury and
even death.
In order to meet the many ongoing public health challenges facing
the Nation, including those outlined above, we urge the Senate to match
the House funding level of more than $8.22 billion for CDC as you
develop the Senate's fiscal year 2020 Labor, Health and Human Services,
and Education, and Related Agencies Appropriations bill.
[This statement was submitted by Don Hoppert, Director of
Government
Relations, American Public Health Association.]
______
Prepared Statement of the Celiac Disease Foundation
Chairman Blunt, Ranking Member Murray, and distinguished Members of
the Subcommittee, thank you for the opportunity to provide written
testimony. Below is the oral testimony I provided to the House
Appropriations Committee Subcommittee on Labor, Health and Human
Services, Education, and Related Agencies on April 9, 2019.
``My name is Marilyn Geller and I am the Chief Executive Officer of
the Celiac Disease Foundation--an organization devoted to finding the
cure for celiac disease.
If I leave you with one message today, it is that celiac disease
is, in fact, a serious autoimmune disease that is not being taken
seriously enough by our government.
Celiac disease is one of the world's most common genetic autoimmune
diseases. Approximately 40 percent of us carry the genetic marker and
about 1 percent of us actually develop celiac disease. Yet, this is
nearly double the number of people with Crohn's disease and ulcerative
colitis combined, and nearly triple the number of those with Type 1
Diabetes.
And, regrettably, researchers are finding that the disease
prevalence is doubling approximately every 15 years, making it a public
health epidemic.
It is estimated that only 20 percent of the 3 million Americans
with celiac disease have been correctly diagnosed. The other 2.4
million continue to suffer and have no idea why. In celiac disease
patients, gluten, a protein found in wheat, barley and rye, triggers an
immune response leading the body to attack the small intestine.
This intestinal damage causes more than 200 debilitating symptoms.
Moreover, gluten ingestion for people with celiac disease causes
permanent immunological scarring, doubles the risk of heart disease,
and acts as a carcinogen, quadrupling the risk of small intestinal
cancers.
My son Henry is why I am sitting before you today. Henry was ill
from birth and was suffering for reasons the best specialists in Los
Angeles could not determine. He suffered from unbearable pain, can't
get out of bed fatigue, endless stomachaches, headaches, medications,
medical procedures, and at the lowest point, in middle school, would
say to me, ``Mommy my brain is telling me to kill myself again, and I
don't want to, please help me.'' It was a fifteen-year ordeal until a
doctor finally ordered a blood test for celiac disease. From that point
on, it's been personal for me.
Strict adherence to a gluten-free diet is the only available
treatment. But, as our celiac disease researchers agree, ``there is no
such thing as a gluten-FREE diet'' because of the constant risk of
cross-contact with gluten, and gluten is in 80 percent of our
foodstuffs.
--And, in our medications--an issue that Ranking Member Cole and
Congressman Tim Ryan are working with us to combat.
--Thank you, Congressman Cole... your leadership on this issue means
so much to our work.
In closing, I traveled here today because we need celiac disease to
be recognized as an important threat to the health of our citizens by
the U.S. Government, including and especially by the NIH, the FDA, the
CDC, and CMS.
--Celiac disease research receives virtually no investment from the
private sector, and little to no resources from NIH, especially
when compared to diseases with similar impact.
--This gap is something Leslie Williams, Founder and CEO of ImmusanT
and leader in celiac disease research knows all too well. She
states:
``Sadly, Marilyn's story is all too common. Drug development is
built on a foundation of basic science, and without public
funding of basic research, drug development is severely
hindered. Moreover, public funding is perceived as
indicative of unmet need and the seriousness of a disease.
Without the attention that comes with public finding,
private funding can be scarce--we have lived this. The
paucity of funding for celiac research is shocking
especially when comparing it to other conditions that are
much less common, arguably less severe AND have available
treatments. Moreover, celiac research and treatment has the
potential to guide understanding and improve therapies for
other autoimmune conditions. Public funding is needed to
support celiac research; private funding will follow in a
more substantial way.''
Let me reiterate the seriousness of this disease.
--The lifetime burden of the gluten-free diet is perceived by
patients to be second only to end-stage renal disease, and by
caregivers, comparable to caring for a patient with cancer.
--Our diagnosed patients report that they miss, on average, 23 days
of work and school annually, resulting in excess utilization of
our healthcare resources.
--Despite what you might see in popular media, celiac disease is not
a fad. It is not a punchline. Americans are dying because we
haven't paid sufficient attention to this disease.
Thank you for your time today and thank you for anything this
distinguished Subcommittee can do to assist us in this fight to end
this serious disease.''
As a result of my testimony, the following was included in the
House Committee on Appropriations Report:
Celiac Disease. The Committee encourages NIH to devote sufficient,
focused research to the study of Celiac disease, including the
autoimmune causation underpinning the affliction. Today, the only known
treatment for this disease is a gluten-free diet; but, recent public
and private sector research has revealed that such a ``treatment'' is
insufficient for many who suffer from Celiac disease. Therefore, the
Committee urges NIAID to support new research to better coordinate
existing research and focus new research efforts toward causation and
ultimately, a cure of this disease. NIAID is encouraged to coordinate
with other Institutes and Centers as appropriate and to submit its plan
for coordination and execution of this research to the Committee on
Appropriations no later than 90 days after enactment of this Act.
I respectfully request that this distinguished Subcommittee include
the same or similar language in its Report. On behalf of the 3 million
Americans afflicted with celiac disease, their loved ones, employers,
co-workers, teachers, and fellow students, I thank you for your efforts
to combat this serious, and potentially treatable, autoimmune disease.
For additional information, please contact: Julia McBeth, Director
of Research and Advocacy, Celiac Disease Foundation at
[email protected].
[This statement was submitted by Marilyn G. Geller, CEO, Celiac
Disease
Foundation.]
______
Prepared Statement of the Child Care Access Means Parents in Schools
Dear Chairmen and Ranking Members,
As organizations committed to promoting the postsecondary success
of college students with children, we are writing to express our strong
support for increasing funding for the Child Care Access Means Parents
in Schools (CCAMPIS) program to $150 million--the amount needed to
provide child care support to approximately 2 percent of Pell-eligible
student parents of children ages 0-5. The CCAMPIS program provides
vital support for the participation and success of low-income parents
in postsecondary education through the provision of campus-based child
care, which is widely recognized as one of the most important supports
for parenting college students. The $35 million increase in CCAMPIS
funding in fiscal year 2018 that was sustained in fiscal year 2019--$50
million for both fiscal years--was a much-needed and appreciated boost
in funding to help address the care needs of students with children. In
light of the additional cap relief provided by the fiscal year 2019
budget deal, tripling this amount to $150 million in the Labor-H
appropriations bill would go even farther to ensuring more parenting
college students receive the child care assistance they need to be
successful in college.
Nearly 4 million college students are parents of dependent
children, representing more than one in five undergraduates in the
United States. Many of these student parents are balancing college and
parenting without the support of a spouse or partner, with 1.7 million
women in college are single mothers.
Student parents, and particularly those who are single, face acute
financial and caregiving demands that can complicate their ability to
persist to graduation. Student parents are more likely than other
students to live in poverty, to have no resources to devote to college
costs, and to incur substantial student debt-due in large part to the
high cost of child care. Student parents also spend significant time
providing care, with 21 percent of community college students spending
20 hours or more per week caring for dependents, according to the 2018
Community College Survey of Student Engagement.
Access to affordable child care is one of the most important
supports that can help student parents succeed in college. Campus-based
child care, however, has been declining in recent years, most
dramatically at community colleges where the largest numbers of student
parents are enrolled. Research suggests that access to campus child
care can play a significant role in student parents' ability to persist
in college and graduate with a degree; without it, they are often
forced to drop out before they have completed their educational
programs. In 2018, 27 percent of community college students reported
that they are likely or very likely to drop out of school due to their
caregiving responsibilities.
The CCAMPIS program is the only Federal program dedicated solely to
providing child care assistance for students in postsecondary settings.
It helps meet the high demand for low-cost child care, enabling student
parents to persist in and complete postsecondary credentials, which are
critical to their families' economic well-being and are associated with
a range of important multigenerational benefits. Continuing to increase
the program's funding to serve a larger percentage of Pell-eligible
students with young children would allow the program to reach tens of
thousands more students, greatly improving their chances of
postsecondary success.
For these reasons, we express our strong support for increasing
funding for the Child Care Access Means Parents in Schools (CCAMPIS)
program to $150 million in the fiscal year 2020 Labor-H appropriations
bill.
Sincerely,
Center for Law & Social Policy (CLASP)
Child Care Aware of America
Early Education Action League
Higher Learning Advocates
JFF
NASPA--Student Affairs Administrators in Higher Education
National Center for Student Parent Programs
National Skills Coalition
New America Education Policy Program
SHP
Women Employed
Young Invincibles
Childcare Centers from Over 25 Institutions, Including:
Alverno Early Learning Center
Ashburnham Westminster Extended Day Program
Associated Students Child Development Center, San Jose State
University
Campus Center for Young Children
College of Lake County Children's Learning Center
College of the Redwoods
East Tennessee State University
Florence Darlington Technical College
LaGuardia Community College Early Childhood Learning Center
Programs, Inc.
Margaret's House @ RIT
Mesa Community College Children's Center
Monroe Community College (SUNY)
Mount Wachusett Community College
Northeast State Community College
Northwest Child Development Center
Partners for Education at Berea College
PERG at Endicott College
Precious Memories Childcare/CCAMPIS
Rio Hondo College Child Development Center
San Juan College Child & Family Development Center
Santa Monica College
Student Parent HELP Center, University of Minnesota--Twin Cities
The Evergreen State College
University of New Mexico
______
Prepared Statement of the Children's Hospital of Philadelphia
Dear Honorable Congressmen and Congresswomen,
We write this letter today as pediatricians to ask you to address
the lack of funding for a very important health issue that affects
millions of Americans--celiac disease and gluten sensitivity. Celiac
Disease is a serious autoimmune disease that affects 1 percent of the
population worldwide. It is caused by exposure to the food protein
gluten which is found in such grains as wheat, barley and rye. Celiac
Disease causes inflammation and intestinal damage, leading to symptoms
such as abdominal pain, constipation, poor growth, anemia, headaches,
vitamin deficiencies and bone disease. If left undiagnosed or
untreated, this disease can increase susceptibility of other autoimmune
diseases such as diabetes as well as adult risk for coronary artery
disease, infertility and small bowel cancers.
Currently, there are no pharmacotherapy options available for
celiac disease and the only therapy remains a strict gluten elimination
diet. Dietary changes may seem simple, but the need for 100 percent
elimination of gluten from the diet is challenging and isolating. There
is a real risk of cross-contamination from packaged foods, restaurants
and school cafeterias that families struggle daily. Even eating a few
crumbs of gluten can cause intestinal damage and setback disease
healing. Hence, families and children avoid eating out and feel an
increased anxiety about food that can impact a child's normal
development. Nearly half of children with celiac disease exhibit
anxiety and physical symptoms from a heightened fear of gluten. Even
when they attempt strict adherence to a gluten-free diet, 70 percent of
children continue to be accidentally exposed to gluten, putting their
long-term health at risk. The same challenges are seen in adults with
celiac disease. A study in 2014 by Shah et al found that celiac disease
patients report a higher treatment burden and reduced quality of life
as compared to patients with other diseases such as gastroesophageal
reflux disease, hypertension, diabetes and congestive heart failure.
As the leaders of the Center for Celiac Disease at the Children's
Hospital of Philadelphia, we encounter many of the symptoms and
challenges of celiac disease in infants and children. We have cared for
more than 3,500 patients and families with celiac disease, wheat
allergy and gluten-sensitivity in the past 5 years. These children can
no longer suffer in silence, which is why we need to invest in research
and development of new therapeutics in celiac disease.
Our clinical physicians and scientists at the Children's Hospital
of Philadelphia are prepared to lead the way in scientific research to
improve diagnostics and discover medical treatments for children, but
this simply cannot be a reality without national funding and support of
our political leaders. This is why we plead that you work with your
colleagues in the Appropriations Committee to increase research support
of this devastating autoimmune disease by increasing funding for Celiac
Disease to at least $15 million for the upcoming 2020 fiscal year.
These funds will be used for immunology and intestinal microbiome
research to initiate collaborative Celiac Disease drug trials. Millions
of Americans nationwide will be forever grateful to your initiative in
helping to find a cure.
If you need any additional information regarding celiac disease and
how we can work together to cure autoimmune conditions and improve
children's health, each of us are happy to meet with you in person.
Thanks again for your time and support.
Sincerely.
[This statement was submitted by Lisa Fahey, MD, David Piccoli, MD,
Co-Director, CHOP Celiac Center Chief, and Arunjot Singh, MD, MPH,
Division of Gastroenterology.]
______
Prepared Statement of the Christopher & Dana Reeve Foundation
Thank you for this opportunity to submit testimony in support of an
appropriation of $8,700,000 for the Paralysis Resource Center (PRC)
within the Administration for Community Living (ACL).
I am proud to speak in support 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 17
years, competing in a rigorous, competitive application process every 3
years for renewal of this grant. For fiscal year 2020, we request level
funding of $8.7 million for the Paralysis Resource Center.
Despite its tremendous success, the PRC has been recommended for
elimination in the President's budget for the third year in a row. The
proposed justification is that its initiatives could be carried out
with other existing funding streams that support services to those with
varying disabilities. However, 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
or mobility impairment. Attempting to replicate the PRC's already
established and thriving programs would take years and result in
greater costs-precisely the opposite of what the Administration's
budget aims to do.
When my father, Christopher Reeve, was paralyzed from the neck down
due to a spinal cord injury in 1995, our family found ourselves 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 us
to rehabilitation facilities or discuss how we 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. Yet instead of accepting that life with paralysis
would be full of limitations, my father dreamed of a brighter future.
That was the genesis of the Christopher & Dana Reeve Foundation: my
father's dream to elevate the needs and rights of the 5.4 million
Americans living with paralysis. But my father was far from alone. The
real drive behind the Paralysis Resource Center came from my
stepmother, Dana. As a caregiver herself, she knew that paralyzed
individuals and caregivers around the country need a centralized place
to call for resources and expertise.
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.
The PRC's Core Programs
Funding made available for the Paralysis Resource Center by the
Subcommittee currently supports five core program areas, or pillars.
These are:
(1) Information Specialists. One of the PRC's most essential
functions is the team of certified, trained Information
Specialists who provide personalized support on how to navigate
the challenges of life with paralysis. This team of experts,
some living with paralysis themselves, are often the first call
for individuals who are newly injured or diagnosed.
To date, the PRC's team of Information Specialists and peer mentors
has provided direct counseling and information to over 105,000 people.
We have distributed over 200,000 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 380
peer mentors have been trained and certified in 40 States.
These individuals have mentored 12,057 peers, including nearly
1,500 caregivers. Mentors are well equipped to offer help on a
variety of topics including: transitioning home from a rehab
center, researching job or educational opportunities, getting
information on health and secondary conditions, coping with the
responsibilities and emotional challenges of being a caregiver,
building confidence and motivation, and navigating local,
State, and national resources.
(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 and territories. Since
1999, the Quality of Life Grants Program has leveraged over $24
million dollars in support of over 3,000 projects in every
State. This program has supported employment trainings and
accessible transportation; established adaptive sports programs
and camps for children; improved access to buildings,
playgrounds and universities; helped individuals learn how to
manage their financial well-being, and provided support
services for veterans. Critically, these programs use the
public attention that comes from receiving funding affiliated
with the Reeve Foundation and the PRC to raise additional funds
in their communities, creating a powerful return on investment.
The organizations funded by the PRC break down barriers and create
life-changing opportunities. For example, a grant to Paraquad, Inc. in
St. Louis, Missouri, supported career leadership training for high
school students with disabilities. Grants to Bridge Disability
Ministries in Bellevue, Washington helped fulfill unmet medical
equipment needs for people living with paralysis. The Lakeshore
Foundation in Birmingham, Alabama was able to provide family recreation
and sports for paralyzed and severely injured U.S. Military members and
veterans through the organization's ``Operation Down Home'' program.
The Veterans Venture Program in Killington, Vermont, helped injured
veterans return to the outdoor sports they loved. Grants to the
Children's Hospital of Wisconsin supported the improvement of the
developmental outcomes for children with impaired mobility. These are
but a handful of examples.
(4) Military & Veterans Program & Multicultural Outreach Program.
The PRC's Military and Veterans Program 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 such as 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 an online
resource hub that attracts close to two million visitors per
year. Earlier this year we launched Reeve Connect, a fully
redesigned online community. This interactive safe space offers
individuals, family members and caregivers a way to ask
questions, share their experiences, and connect with those who
understand the everyday and intimate realities of paralysis.
The Value of Integrated Services
There are many examples in which an individual living with
paralysis has not only participated in one program of the PRC, but has
benefitted from the integrated nature of our services. In 2011, Erin
Cobb from North Carolina was a victim of domestic violence when her ex-
husband, a former Marine suffering from severe PTSD, attempted to
murder her and then killed himself. Erin was shot twice in the face and
neck and, after almost losing her life due to life-threatening
infections, emerged paralyzed to an unknown and terrifying new normal.
Erin did not receive the information or care she needed and was
dangerously close to losing her life. Four months after the injury, her
mother, Janet, contacted the Reeve Foundation through the Paralysis
Resource Center, where she was connected to comprehensive materials and
personalized guidance. Erin and Janet finally felt as if there was hope
and a path forward. Erin was able to access appropriate rehabilitation
and surgical reconstruction, and ultimately returned to work. Janet
left her career and became Erin's full-time caregiver, ensuring that
Erin is able to live as independently as possible. Janet credits the
PRC with saving Erin's life. She has become one of the PRC's most
dedicated advocates, serving on our Military and Veterans Programs
(MVP) Council and volunteering as a peer mentor and ambassador for the
MVP and Peer & Family Support Program.
Janet and Erin's journey--from PRC clients, to program
participants, to peer mentors and ambassadors--shows the value of the
integrated services made possible by the scope, scale and stability of
the PRC.
The Importance of Federal Funding
I would like to close my remarks by emphasizing why Federal funding
for the PRC is so important. A resource center that is relied on by
millions of Americans affected by paralysis needs consistent, regular
funding. Because many individuals living with paralysis have 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. Simply put, Federal funds are
essential for this valuable, life-changing resource to work.
Federal funding for the PRC is also a good investment. Our
resources help people to adapt their homes, gain the tools they need to
return to their communities, and eventually to work. The programs
funded by the PRC allow individuals to make better informed decisions,
access resources, and minimize dangerous and costly secondary health
conditions while leading active lives.
My father 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 a solid foundation. The resources,
support and community created by the PRC are the foundation for hope
for millions of individuals affected by paralysis around the country.
On behalf of the board, leadership, advocates of the Christopher
and Dana Reeve Foundation, and the hundreds of thousands of individuals
whom we are able to serve, I thank the Subcommittee for its ongoing
support, and for your consideration of this request.
[This statement was submitted by Alexandra Reeve Givens, Board
Member, Christopher & Dana Reeve Foundation.]
______
Prepared Statement of Clausen House
Mr. Chairman, Ranking Member Murray, I am Ms. Jaynette Underhill,
Executive Director of Clausen House-a non-profit organization founded
in 1967 in Oakland, California that is the longest-serving, multi-
programmatic organization accessed by adults with intellectual and
developmental disabilities (IDD) in Alameda County, California. The
overarching mission of Clausen House is to create opportunities for
individuals with intellectual and developmental disabilities to gain
competency, identify and realize their goals and aspirations, develop
relationships and join the community with increasing command over their
own lives.
I am truly honored to have this opportunity to present written
testimony in support of an enhanced fiscal year 2020 budget for the
Administration for Community Living (ACL); and to urge the Subcommittee
to include language in its Committee Report that would pave the way for
funding of a Pilot Program proposed by Clausen House to establish an
Integrated Senior Day Program and Adult Transition Services Program in
fiscal year 2020.
First, the Administration for Community Living is the Federal
Government's preeminent advocate for older adults, people with
disabilities and their families and caregivers, and provides grant and
other support to, among other entities, organizations or networks of
organizations to help older adults and people with disabilities to find
support and services to help them with community living and
integration. ACL also funds research and development to generate new
knowledge and promote its use to enhance community living and
integration for citizens with disabilities. Last year, at our urging,
the Senate Appropriations Committee included language on page 163 of S.
Rept. 115-289 urging ACL to partner with HUD, CMS and other Federal
agencies to support efforts to provide specialized housing for
individuals with developmental disabilities-services that Clausen House
provides in Alameda County, California.
The ACL also funds ``Developmental Disabilities Projects of
National Significance'' through grants and contracts, to demonstrate
innovative methods to support the independence, productivity and
integration into the community of persons with development
disabilities.
In short, the goals, objectives and authorized activities of the
ACL mirror the priorities of Clausen House and the broad range of
unique integrated, comprehensive services that it has been providing to
citizens with intellectual and developmental disabilities for over a
half century.
However, the President's fiscal year 2020 budget for the ACL makes
significant reductions in programs that are of special importance to
Clausen House and other entities that provide the kind of IDD services
that we provide to our constituents in California. For example, the
President virtually eliminates the Projects of National Significance
program, cutting the program from $12 million in fiscal year 2019 to $1
million next year. He also dramatically cuts the National Institute on
Disability, Independent Living and Rehabilitation Research-the agency's
primary grant-making office-by over 17 percent from $109 million to $90
million in fiscal year 2020. Overall, the President's budget for
Disability Programs, Research and Services is cut by over 19 percent
below current levels.
We urge the Subcommittee to restore these programs to at least the
appropriations levels that were approved in fiscal year 2019.
Second, consistent with the mission and programs of the
Administration for Community Living, Clausen House is recommending
Committee Report language that would allow the ACL to fund a unique,
two-part adult services Pilot Program-a Pilot Program that will
directly benefit citizens with intellectual and developmental
disabilities to remain independent, continue to live in specialized
housing settings, and enhance service offerings to facilitate
independence, care and quality of life for these important constituents
of Clausen House.
As part of the Pilot Program, and to augment existing efforts to
promote independence and integrated activities for seniors with
intellectual and developmental disabilities, Clausen House is proposing
the establishment of a comprehensive Integrated Senior Day Program
Initiative for IDD citizens in Alameda County and elsewhere. The
innovative design and delivery of this program initiative for senior
citizens with intellectual and developmental disabilities would create
a model that does not exist anywhere else in the County.
The Clausen House model envisions a full range of valuable
activities for IDD seniors, including but not limited to music, arts
and crafts, gardening, exercise programs, walking, dancing and other
community integration activities that will be tailored specifically to
address the unique needs of an aging IDD population.
Furthermore, the Clausen House program envisions an ongoing effort
to form partnerships with Schools of Social Work among colleges and
universities to access the tremendous resources that those institutions
of higher education could provide to IDD citizens, including services
from licensed social workers, faculty, and Masters of Social work
students seeking field experience among our constituencies.
Clausen House also would use any funding that might be made
available through the ACL budget to sustain its programs through
reimbursements from the State, and through long-term partnerships with
Health Maintenance Organizations, healthcare providers operating under
provisions of the Affordable Care Act, and partnerships with skilled
nursing facilities and behavioral health experts.
This unique approach to further integrating our IDD citizens into
the fabric of the larger community has the potential to be a
transformative model for adult service delivery in that it is designed
to fill a gap in service; enhance quality of life outcomes; create
efficiencies in service delivery and be carried out with low
administrative overhead costs. Initial estimates are that, depending on
funding, this innovative program would immediately be able to provide
services to at least 45 new IDD senior citizens in fiscal year 2020.
One of the systemic challenges facing the intellectual and
developmental disabilities community is the dearth of critically-needed
services to provide to young adults as they ``graduate'' from 18 year
olds, into the early ages of adulthood (19-25). The need is great to
provide ``transition'' programming from adolescence/young adults into
adulthood.
As part of the proposed Pilot Program, the gap in services to this
special group of citizens is proposed to be filled through an
innovative Adult Transition Services Program Initiative that will be
specifically designed to serve IDD citizens between the ages of 19 and
25 years of age. The need for adult transition services to this age
group is significant as the number of individuals with intellectual and
developmental disabilities within Alameda County and elsewhere is
increasing dramatically each year.
Specifically, as part of the Pilot Program, the Clausen House Adult
Transition Program Initiative envisions the establishment of an
innovative in-service design and delivery system that does not exist.
Funding ultimately provided by ACL would allow Clausen House and
others, to develop this desperately needed adult transition program
initiative-an initiative that can be sustained after an initial ACL
investment, by other funding available through Regional Centers that
are under contract with the State Department of Developmental Services
(DDS); private pay for services; non-profit foundations; and
partnerships with existing Transition Age Youth services in the State.
This component of our proposed Pilot Program is consistent with
Clausen House's 50-year track record of providing integrated,
comprehensive services to adult IDD citizens and would provide a
significant, transformational program to bridge the major gap between
services for adolescents and adults with intellectual and developmental
disabilities. Again, this innovative Adult Transition Services Program
Initiative is at the core of Clausen House's mission to provide
comprehensive services designed to allow IDD adults to be independent,
healthy, safe and able to enjoy a sustained quality of life.
In closing, Mr. Chairman and Ranking Member Murray, we believe that
the Clausen House-proposed Pilot Program will allow entities like our
organization to dramatically enhance the delivery of services to
citizens with intellectual and developmental disabilities in Alameda
County and nationwide. On its website in describing its Consumer Choice
and Control responsibilities, the Administration for Community Living
says, among other things:
``Older adults and people with disabilities are unique individuals,
and the help they may need is unique, as well. These programs focus on
helping ensure that the preferences and the needs of older adults and
people with disabilities are at the center of the system of services
and supports that enable them to live the lives they want to live.''
Clausen House concurs and embraces these responsibilities within
our mission. To these ends, we firmly believe that our proposed Pilot
Program is directly aligned with the ACL mission and is truly a Project
of National Significance that meets the requirements of the programs,
projects and activities that are funded each year under this critically
important ACL program.
[This statement was submitted by Ms. Jaynette M. Underhill, MA,
Executive Director, Clausen House.]
______
Prepared Statement of the Coalition for Clinical and Translational
Science
fiscal year 2020 appropriations recommendations
_______________________________________________________________________
--CCTS joins the broader medical research community in asking
Congress to provide the National Institutes of Health (NIH)
with at least a $2.5 billion funding increase for fiscal year
2020, to bring total agency funding up to a minimum of $41.6
billion annually.
--Please provide the Clinical and Translational Science Awards
(CTSA) program at the National Center for Advancing
Translational Sciences (NCATS) with at least a $25 million
increase for fiscal year 2020 to bring total support for
the program up to a minimum of $585 million in annual,
dedicated line-item funding.
--Please provide the Cures Acceleration Network (CAN) at NCATS with
$100 million in dedicated funding for fiscal year 2020, to
bolster total support for the program and to ensure that
adequate resources are available to ensure notable
progress.
--Please provide the Institutional Development Awards (IDeA)
program and the Research Centers in Minority Institutions
(RCMI) program at NIH with meaningful funding increases for
fiscal year 2020.
--CCTS joins the broader medical research community in asking
Congress to provide the Agency for Healthcare Research and
Quality (AHRQ) with a $122 million increase for fiscal year
2020 to bring total funding up to $460 million annually.
--Please continue to support research training and career
development activities at NIH and AHRQ to ensure that the
next generation of clinical and translational researchers
is well-prepared.
--Please work with your colleagues to reauthorize the Patient
Centered Outcomes Research Institute (PCORI) to ensure
important research can continue in fiscal year 2020.
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, thank you for considering the views of the clinical
and translational research community as work on fiscal year 2020
appropriations. Moreover, thank you for providing NIH with a
significant $2 billion funding increase for fiscal year 2019, for
notably increasing CTSA funding and improving stewardship of dedicated
resources, and for supporting AHRQ.
about the coalition for clinical and translational science
The Association for Clinical and Translational Science, the
Clinical Research Forum, the CTSA PIs, and the related stakeholder
community work together through the Coalition for Clinical and
Translational Science (CCTS) to speak out with a unified voice on
behalf of the clinical and translational research community. CCTS is a
nationwide, grassroots network of dedicated individuals who seek to
educate Congress and the administration about the value and importance
of clinical and translational research, and research training and
career development activities. Our goals are to ensure that the full
spectrum of medical research is adequately funded, the next generation
of researchers is well-prepared, and the regulatory and public policy
environment facilitates ongoing expansion and advancement of the field
of clinical and translational science.
about the ctsa program and the full spectrum of medical research
The CTSA Program was established to disseminate medical and
population health interventions to patients and populations more
quickly, and to enable research teams, including scientists, patient
advocacy organizations and community members, to tackle system-wide
scientific and operational problems in clinical and translational
research that no one team can overcome in isolation. The CTSA program
honors the promise of the Cures Act by improving research
infrastructure and accelerating the rate at which breakthroughs in
basic science are translated to innovations with a tangible benefit to
patients.
The goals of the CTSA program include; (1) train and cultivate the
translational science workforce, (2) engage patients and communities in
every phase of the translational process, (3) promote the integration
of special and underserved populations in translational research across
the human lifespan, (4) innovate processes to increase the quality and
efficiency of translational research, particularly of multisite trials,
(5) advance the use of cutting-edge informatics.
The CTSA Program supports a national network of ``hubs'' at
academic research centers across the country that work collaboratively
to improve the translational research process to get more treatments to
more patients more quickly. The hubs collaborate locally and regionally
to catalyze innovation in training, research tools and processes.
Roughly 58 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. 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 medical research includes basic research, pre-
clinical research, clinical research, clinical implementation, and
public health. In order to maximize efficiency and patient-
centeredness, this research must be done collaboratively and in a
systematic way. This team-science approach focuses on outcomes and
patient/health system benefits, rather than the advancement of science
for the sake of science. There are numerous examples of the success of
this approach, including the community's annual awards for the ``Top
10'' projects, which can be viewed here. In fact, the project studying
culturally component healthcare delivery using community barber shops
in Los Angeles, was even praised by NCATS in the Center's fiscal year
2020 budget request.
Finally, the appropriations committees have included meaningful
committee recommendations in the past that have facilitated meaningful
advancements for the full spectrum of medical research, the CTSA
program, and career development for early stage investigators and we
hope similar recommendations will be provided for fiscal year 2020.
recent community successes
--Ananth Shalev, a UAB investigator, has demonstrated that taking a
commonly used blood pressure medicine (verapamil) helps to
preserve pancreas (beta cell) function in Type 1 diabetes and
thereby leads to reduced insulin need and significantly better
diabetes control. This novel, inexpensive, well tolerated
treatment when applied to Type 1 and Type 2 diabetes will
address a major health problem, especially prevalent in the
Southeast.
--Steve Rowe, a UAB investigator, has led a team to demonstrate that
the newly developed medicine, ivacaftor, is not only a
breakthrough treatment for the pulmonary problem in cystic
fibrosis but can also be used to treat adult chronic
obstructive pulmonary disease. COPD is a major cause of
morbidity and mortality and ivacaftor can significantly enhance
lung function, patient functional status and quality of life.
--Researcher at Einstein-Montefiore found that Preeclampsia is more
prevalent and severe in women with African ancestry, most
likely because of genetic factors. The research team has been
investigating a variant of the gene encoding apolipoprotein L1
(APOL1), which was previously shown to confer a high risk of
kidney disease in black Americans. Studying two independent
populations of pregnant black women from the Bronx and from
Tennessee, they found that preeclampsia was associated with the
APOL1 high-risk genotype. Interestingly, it was the genotype of
the fetus, not the mother, which mattered.
a timely note from the ctsa community
Thank you again for your leadership on medical research funding
issues and for your ongoing support for the Clinical and Translational
Science Awards (CTSA) program. We reach out to you today on behalf of
the Association for Clinical and Translational Science, Clinical
Research Forum, the Coalition for Clinical and Translational Science,
and the CTSA Program PIs, to reiterate the importance of maintaining
the line-item protecting CTSA program funding within the Senate's
fiscal year 2020 Labor-Health and Human Services-Education
Appropriations Bill or corresponding Committee Report.
The community deeply appreciates the inclusion of $17 million in
additional CTSA funding through LHHS appropriations efforts for fiscal
year 2019. Just as important though was the traditional utilization of
line-item funding and the inclusion of strong committee recommendations
(most notably during the fiscal year 2018 process) regarding
stewardship of dedicated CTSA resources and oversight of the program.
These recommendations and related efforts have been crucial to ensuring
that CTSA funding provided by Congress is invested in local hubs to
advance ongoing efforts, and that the program overall can continue to
grow in scope to meet its mission.
The community remains concerned that any flexibility in annual CTSA
funding will facilitate a reduction in resources that will diminish
support for established institutions and eliminate opportunities for
meritorious emerging research centers working to join our national
network. As you consider fiscal year 2020 appropriations for NIH and
medical research, please continue to invest in the CTSA program with a
proportional increase, but more importantly, please ensure that the
funding line-item for CTSAs is maintained and supported with an
allocation of at least its current fiscal year 2019 level of $560
million.
Thank you for your time and your consideration of our request.
Please consider the community and its local representatives a resource
on this topic, and let us know if we can provide any additional
information or answer any timely questions.
[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 95 national health
organizations representing more than 100 million patients and
consumers, health providers, professionals and researchers--welcomes
the opportunity to submit this statement for the record about the
importance of health funding. Together, our member organizations speak
with one voice before Congress and the administration in support of
federally funded health program with the shared goal of improved health
and well-being for all. Each member organization has their own funding
priorities within the Department of Health and Human Services (HHS),
but we all believe that to truly improve health, you need strong,
sustained, predictable funding for all Federal agencies and programs
across the public health continuum.
HHS agencies have different roles in addressing our Nation's
mounting health demands, but they are all interconnected. For example,
investment in medical research at the National Institutes of Health
(NIH) is important, but on its own won't improve health. You need the
Food and Drug Administration (FDA) to approve new treatments. You need
the Centers for Disease Control and Prevention (CDC), Health Resources
and Services Administration (HRSA), Substance Abuse and Mental Health
Services Administration (SAMHSA), and Indian Health Service to ensure
we have qualified health professionals who can move discoveries into
healthcare and public health delivery, support Americans while they're
awaiting new cures, and prevent them from getting sick in the first
place. You need the Agency for Healthcare Research and Quality (AHRQ)
to provide evidence on what treatments work best, for whom, 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 public
health continuum, we're falling short on the promise to protect
Americans and improve health. Shortchanging public health and health
research programs--or cutting health programs at the expense of
others--leaves Americans vulnerable to health threats and does nothing
to prevent these problems from arising in the first place.
Despite the importance of these agencies and their programs in
protecting Americans' lives, Federal spending for public health and
health research represents a small and shrinking share of the budget.
In fiscal year 2018 discretionary health spending was only $62 billion,
or 1.5 percent of all Federal spending. Of this, more than half
supported medical research at the NIH, and the remainder supported all
other public health activities--disease prevention & response, health &
safety security, workforce development, and access to primary and
preventative care.
Funding for public health and health research programs is already
well below fiscal year 2010 levels. The return of the austere spending
caps at the end of this fiscal year threatens to further shrink public
health, health research, and other domestic programs by $55 billion--11
percent across the board--when the Bipartisan Budget Act of 2018
expires. As a founding co-chair of NDD United, the Coalition joins more
than 850 organizations in urging Congress and the White House to
negotiate a bipartisan budget deal to raise the spending caps as soon
as possible. The Coalition for Health Funding supports the Investing
for the People Act of 2019 (HR 2021) that lifts the defense and non-
defense discretionary spending levels for 2020 and 2021, and we will
support other proposals that seek to avoid the coming funding cliff.
Previous bipartisan budget agreements have paved the way for modest
investments in public health and health research, but they are far
short of what is needed to truly improve and protect the health of the
population. Lawmakers must build on the success of the previous
bipartisan budget agreements to ensure public health and other programs
have the resources necessary to carry out their mission.
Raising the caps however, is only the first step in ensuring that
public health and health research receive necessary funding.
Appropriators must also raise the 302(b) allocation for the Labor-HHS-
Education Subcommittee to address its important and long-neglected
needs. The bill has never received a proportional funding increase from
previous bipartisan budget deals, and as a result has lost almost $16
billion in purchasing power over the last decade; it would require a
302(b) allocation of $194 billion to return to the fiscal year 2010
level in inflation-adjusted dollars. That's why the Coalition for
Health Funding partnered with the Campaign to Invest in America's
Workforce, Committee for Education Funding, and Coalition on Human
Needs in bringing together more than 550 organizations to urge
appropriators to raise the subcommittee's allocation in fiscal year
2020 after a decade of stagnation and underinvestment.
There are other challenges on the horizon that complicate the
subcommittee's work in fiscal year 2020 that are of great concern to
the Coalition for Health Funding. First, the administration's
immigration policies continue to take a toll on the health of migrant
children and families. Every day there are new headlines about the
abuse of children in the government's care, and the trauma sustained by
parents separated from their children, who will be at increased risk of
mental and physical health complications throughout the rest of their
lives. Remedying these failed policies will continue to be a
significant cost. HHS has already redirected nearly a billion dollars
from the discovery of cures, infectious disease outbreak response, and
access to critical and primary care preventative services to support
the response. Lawmakers must find a better way to support migrant
children and families and address this humanitarian crisis.
Another challenge is that many important mandatory health funding
streams are set to expire at the end of fiscal year 2019, including the
Community Health Center Fund, National Health Service Corps Fund, and
Patient Centered Outcomes Research Trust Fund. The expiration of these
funds would leave gaping holes in the discretionary side of the ledger
that if not filled by appropriators, would hinder vulnerable Americans'
access to care and limit scientific discovery.
Finally, the Coalition is concerned about the challenge posed by
the political climate, and the potential for it to cause another
government shutdown. After the 35-day shutdown earlier this year--the
longest in American history--some Members of Congress have proposed
legislation to trigger automatic continuing resolutions (CRs) as a way
to prevent future shutdowns. The Coalition is deeply concerned that
automatic CRs would harm public health and other domestic programs
funded through the annual appropriations process. When the Federal
budget process breaks down, and CRs are the norm, it creates
dysfunction and disruption across the entire public health continuum.
New initiatives, innovations, and hires are put on hold. Procurement
cycles lapse. Opportunities are lost and ultimately the American people
are hurt. Automatic CRs would only exacerbate this uncertainty and
remove the incentives for Congress to complete the appropriations
process in a timely manner. For a bill as large and complicated as
Labor-HHS--which only narrowly escaped the last shutdown thanks its
strategic pairing with the Defense spending bill--we fear automatic CRs
would ultimately lead to cuts in health funding, whether the automatic
CR would freeze funding at the current year's levels, or require a
percentage of cuts.
We hope in your ongoing deliberations on fiscal 2020 and beyond you
will recognize the importance of raising the spending caps and consider
the costs--both real costs and opportunity costs--of spending cuts, and
the value of all public health and health research programs in
improving the lives of American families. We look forward to working
with the subcommittee in these endeavors, and hope you will turn to the
Coalition for Health Funding as a resource in the future.
[This statement was submitted by Emily J. Holubowich, Executive
Director, Coalition for Health Funding.]
______
Prepared Statement of College Now Greater Cleveland
Dear Chairs DeLauro and Blunt and Ranking Members Cole and Murray,
Thank you for your continued leadership and support of programs and
grants that help make postsecondary education a possibility for low-
income and middle-income students. The priorities identified in the
fiscal year 2020 funding discussion are important to thousands of
families for whom postsecondary is a means of economic advancement and
opportunity. I write on behalf of College Now Greater Cleveland, a
college access organization that serves 29,000 individuals annually in
185 venues across five counties in Northeast Ohio. We respectfully
request that Congress appropriate to the U.S. Department of Education
funding that would allow for a maximum Pell Grant of $6,095 per
student, Supplementary Educational Opportunity Grant funding of $1.028
billion, Federal Work-Study funding of $1.434 billion, TRIO program
funding of $1.12 billion, GEAR UP funding of $395 million and 21st
Century Learning Grant funding of $1.32 billion. Additionally, we
request that the Corporation for National and Community Service
receives at a minimum, level funding to support the AmeriCorps program.
College Now helps middle and high school students and their
families as well as adult learners navigate the college and career
process through one-on-one coaching, financial aid counseling and
scholarship and retention services. At its founding in 1967, College
Now was the first organization of its kind in the Nation. Since then,
it has become the largest college access and success organization in
Ohio and remains one of the largest in the country. We know from our
work across the region, and research conducted by Cleveland's
postsecondary attainment initiative, the Higher Education Compact of
Greater Cleveland, that many students are thrown off their paths to and
through college because of intractable issues and insurmountable
barriers related to college access and affordability. For this reason,
we are supportive of the following Federal investments to ensure that
more students are able to access and afford postsecondary:
Increase funding for the Pell Grant
Since 1972, the Pell Grant has served as the primary source of
Federal support for in-need students. In Ohio, a total of $8 million in
Pell Grants is awarded annually to 209,000 students. While we are
grateful that Congress continues to prioritize the Pell Grant and even
reinstated funding to permit its use for summer coursework, its current
allocation is not large enough to match higher education's rising cost.
In 1980 the Pell Grant covered 68 percent of college costs, but in
2016-17 it covered only 25 percent of costs. If Pell were to maintain
its purchasing power from 40 years ago, the maximum grant would be
$15,471; for the 2018-19 school year maximum Pell was $6,095.
To maintain the purchasing power of the Pell Grant, we respectfully
request that Congress increase the Pell Grant maximum to $6,753 in
fiscal year 2020.
Campus Based Aid--Work Study and SEOG
In addition to increasing Pell, we ask that Congress continue to
invest in Federal Work Study (FWS) and the Supplemental Education
Opportunity Grant (SEOG). These grants are important parts of the
college financing puzzle for low and middle-income family. College Now
provides scholarships to over 1,700 Pell-eligible students each year.
As part of these students financial aid package they also receive an
average of $652 in FWS and $1,149 in SEOG. Even with this support and
need-based aid grants, scholarships, institutional aid and Federal
loans, these families face an average unmet need of $7,895.
To prevent the college financing gap from growing, College Now
respectfully requests that Congress continue its investment of $1.434
billion for Federal Work Study and of $1.028 billion for the
Supplemental Education Opportunity Grant.
Federally Funded College Access Programs--TRIO, GEAR UP, and 21st
Century CLC's
In addition to facing major affordability challenges, many of the
students we serve lack so-called ``college knowledge.'' College
knowledge is what the average student with a degree-holding family
member have inherently as compared to a student without any exposure to
postsecondary success. College Now utilizes funds available through
several federally funded college access programs including TRIO Grant
programs, GEAR-UP and 21st Century Community Learning Center program to
provide students with these critical skills.
College Now is proud to be the recipient of several TRIO Grant
programs. Our Upward Bound grants serve students at East Cleveland's
Shaw High School and Warrensville Heights High School. These grants
allows College Now advisors to provide scholars in these low-income
communities with school-based activities that improve academics,
promote executive functioning skills and encourage their post-high
school aspirations.
College Now's Talent Search grant serves several hundred students
within the Cleveland Metropolitan School District. Talent Search helps
high schools students from low-income communities, who have potential
for success in college, prepare for postsecondary through programming
that includes one-on-one advising services, college and career visits,
career talks, scholarship clubs and shadowing opportunities. This
program provides additional resources and added capacity in schools
where such individualized support may otherwise be impossible.
College Now is a proud to implement GEAR UP grants that work to
transform the Parma School City School District and the Cleveland
Heights/University Heights School District by helping at-risk students
prepare for and achieve success in college. College Now staff work at
each district to create a college-going culture by providing college
campus visits and afterschool activities, and by helping students
through the college-going process. College Now has a history of
successfully implementing GEAR UP grants. Our participation in a GEAR
UP grant, implemented in Elyria from 2006-2011 led to a 36 percent
increase in the percentage of students testing at or above grade level
in English and a 33 percent increase in the percentage of students
testing at or above grade level in mathematics.
After school education programs play an important role in the lives
of youth as the time between school ending and when parents return from
work can be one with limited supervision. College Now's 21st Century
Community Learning Center Grants support an eight-week afterschool
program in nine locations across Northeast Ohio to help students
improve math and reading skills, ACT scores and increase students'
college and career readiness. Upon completion of the program, students
receive a $200 stipend and have an opportunity for an internship for
which they are also compensated.
College Now respectfully requests that Congress continue its
investment in federally funded college access programs at the amounts
requested by their communities: $1.12 billion for TRIO, $395 million
for GEAR UP, and $1.32 billion for 21st Century Community Learning
Centers.
Funding for the Corporation for National & Community Service
College Now is the fiscal agent for a $1.1 million statewide
AmeriCorps program that deploys 85 members at 9 host sites across Ohio.
College Now also directly manages 31 AmeriCorps College Guides and 10
Coaches in Northeast Ohio. The Guides serve 6th-12th graders with
college and career advising and financial aid counseling and serve high
school graduates with support to achieve their higher education goals.
The Coaches deliver curriculum on career and college pathways to
Cleveland Metropolitan School District middle school students and five
career academy high schools. Since the program's inception in 2009, 536
College Guides have served 911,200 hours and helped 250,737 Ohio
students and adults (primarily first-generation college-goers and
students from low-income backgrounds) through the college-going and
career readiness process. The AmeriCorps program is critical to
providing these important college and career preparation services and
giving those who serve valuable community based experiences.
We respectfully echo the request of the Voices for National Service
to at a minimum, provide level funding for the CNCS in fiscal year 2020
to allow for the continued support of the AmeriCorps program.
Thank you for this opportunity to provide our funding priorities
for the fiscal year 2020. To meet the shifting demand of employers it
is critical that more students of all economic backgrounds are able to
access and succeed in postsecondary and graduate without excessive
debt. Through continued supports--both financial and programmatic--our
country can work together to close the attainment gap and promote the
health and wealth of its communities. Thank you again for your support
of this important goal.
Sincerely.
[This statement was submitted by Lee Friedman, CEO, College Now
Greater Cleveland.]
______
Prepared Statement of the College on Problems of Drug Dependence
national institutes of health
Thank you for the opportunity to submit testimony in support of the
National Institute on Drug Abuse. The College on Problems of Drug
Dependence (CPDD), a membership organization with over 1000 members,
has been in existence since 1929. It is the longest standing group of
scholars in the U.S. addressing problems of drug dependence and abuse.
CPDD serves as an interface among governmental, industrial and academic
communities maintaining liaisons with regulatory and research agencies
as well as educational, treatment, and prevention facilities in the
drug abuse field. In the fiscal year 2020 Labor-HHS Appropriations
bill, we request that the subcommittee provide at least $2.5 billion
above the fiscal year 2019 level for the National Institutes of Health
(NIH), and within that amount a proportionate increase for the National
Institute on Drug Abuse (NIDA) using the Institute's conferenced level
of $1,419,844,000 as NIDA's base budget for Fiscal 2020. In addition,
within the NIH total, we request at least $500 million for targeted
research on opioid misuse and addiction, development of opioid
alternatives, pain management, and addiction treatment, of which at
least $250 million is allocated to NIDA and included in its base budget
for Fiscal 2020. We also respectfully request the inclusion of the
following NIDA specific report language.
Opioid Initiative.--The Committee continues to be extremely
concerned about the epidemic of prescription opioids, heroin, and
illicit synthetic opioid use, addiction and overdose in the U.S.
Approximately 174 people die each day in this country from drug
overdose (over 100 of those are directly from opioids), making it one
of the most common causes of non-disease-related deaths for adolescents
and young adults. This crisis has been exacerbated by the availability
of illicit fentanyl and its analogs in many communities. The Committee
appreciates the important role that research plays in the various
Federal initiatives aimed at this crisis. To combat this crisis, the
bill includes at least $250,000,000 for research related to preventing
and treating opioid misuse and addiction. With additional funding for
NIDA targeted at addressing the opioid epidemic, the Institute's opioid
specific allocation should be targeted for the following areas:
development of safe and effective medications and new formulations and
combinations to treat opioid use disorders and to prevent and reverse
overdose; conduct demonstration studies to create a comprehensive care
model in communities nationwide to prevent opioid misuse, expand
treatment capacity, enhance access to overdose reversal medications,
and enhance prescriber practice; test interventions in justice system
settings to expand the uptake of medication assisted treatment and
methods to scale up these interventions for population-based impact;
and develop evidence-based strategies to integrate screening and
treatment for opioid use disorders in emergency department and primary
care settings.
Addressing the Opioid Crisis in Rural Regions.--The Committee
encourages NIDA to continue its partnership with the CDC, SAMHSA, and
the Appalachian Regional Commission in support of research to help
communities develop comprehensive approaches to prevent and treat
consequences of opioid injection, including substance use disorders,
overdose, HIV, hepatitis B and C virus infections, as well as sexually
transmitted diseases. These projects will serve as models for
addressing opioid injection epidemics that can be implemented by health
systems in similar rural communities in the U.S.
Barriers to Research.--The Committee is concerned that restrictions
associated with Schedule I of the Controlled Substance Act effectively
limit the amount and type of research that can be conducted on certain
Schedule I drugs, especially marijuana or its component chemicals and
new synthetic drugs and analogs. At a time when we need as much
information as possible about these drugs to find antidotes for their
harmful effects, we should be lowering regulatory and other barriers to
conducting this research. The Committee directs NIDA to provide a short
report on the barriers to research that result from the classification
of drugs and compounds as Schedule I substances.
Raising Awareness and Engaging the Medical Community in Drug Abuse
and Addiction Prevention and Treatment.--Education is a critical
component of any effort to curb drug use and addiction, and it must
target every segment of society, including healthcare providers
(doctors, nurses, dentists, and pharmacists), patients, and families.
Medical professionals must be in the forefront of efforts to curb the
opioid crisis. The Committee continues to be pleased with the NIDAMED
initiative, targeting physicians-in-training, including medical
students and resident physicians in primary care specialties (e.g.,
internal medicine, family practice, and pediatrics). NIDA should
continue its efforts in this space, providing physicians and other
medical professionals with the tools and skills needed to incorporate
substance use and misuse screening and treatment into their clinical
practices.
Marijuana Research.--The Committee is concerned that marijuana
public policies in the States (medical marijuana, recreational use,
etc.) are being changed without the benefit of scientific research to
help guide those decisions. NIDA is encouraged to continue supporting a
full range of research on the health effects of marijuana and its
components, including research to understand how marijuana policies
affect public health.
The HEALthy Brain and Child Development (BCD) Study.--The Committee
recognizes and supports the NIH HEALthy Brain and Child Development
Study, which will establish a large cohort of pregnant women from
regions of the country significantly affected by the opioid crisis and
follow them and their children for at least 10 years. This knowledge
will be critical to help predict and prevent some of the known impacts
of pre- and postnatal exposure to drugs or adverse environments,
including risk for future substance use, mental disorders, and other
behavioral and developmental problems. The Committee recognizes that
the BCD Study is supported in part by the NIH HEAL Initiative?, and
encourages other NIH Institutes, such as NICHD, NIMH, NHLBI, NCI,
NIAAA, NIMH, NINR, as well as the Office of the Director to support
this important study.
Electronic Cigarettes.--The Committee understands that electronic
cigarettes (e-cigarettes) and other vaporizing equipment are
increasingly popular among adolescents, and requests that NIDA fund
research on the use and consequences of these devices. The Committee
also supports the Population Assessment of Tobacco and Health (PATH)
Study, a collaboration between NIDA and the U.S. Food and Drug
Administration (FDA) Center for Tobacco Products to help scientists
learn how and why people start using tobacco products, quit using them,
and start using them again after they have quit, as well as how
different tobacco products affect health outcomes over time.
Drug abuse is costly to Americans; it ruins lives, while tearing at
the fabric of our society and taking a financial toll on our resources.
Over the past three decades, NIDA-supported research has revolutionized
our understanding of addiction as a chronic, often-relapsing brain
disease--this new knowledge has helped to correctly emphasize the fact
that drug addiction is a serious public health issue that demands
strategic solutions.
NIDA supports a comprehensive research portfolio that spans the
continuum of basic neuroscience, behavior and genetics research through
medications development and applied health services research and
epidemiology. While supporting research on the positive effects of
evidence-based prevention and treatment approaches, NIDA also
recognizes the need to keep pace with emerging problems. We have seen
encouraging trends in strategies to address these problems, but areas
of continuing significant concern include the recent increase in
lethalities due to heroin and synthetic fentanyl, as well as continued
abuse of prescription opioids. Our knowledge of how drugs work in the
brain, their health consequences, how to treat people already addicted,
and what constitutes effective prevention strategies has increased
dramatically due to research. However, since the number of individuals
who are affected is still rising, we need to continue the work until
this disease is both prevented and eliminated from society.
We understand that the fiscal year 2020 budget cycle will involve
setting priorities and accepting compromise, however, in the current
climate we believe a focus on substance abuse and addiction deserves to
be prioritized accordingly. Thank you for your support for the National
Institute on Drug Abuse.
______
Prepared Statement of the 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 2020, COSSA urges the Committee to appropriate
$41.6 billion for the National Institutes of Health (NIH); $7.8 billion
for the Centers for Disease Control and Prevention (CDC), including
$175 million for the National Center for Health Statistics (NCHS); $460
million for the Agency for Healthcare Research and Quality (AHRQ); $655
million for the Bureau of Labor Statistics (BLS); $670 million for the
Institute of Education Sciences (IES); and $106.1 million for the
Department of Education's International Education and Foreign Language
programs.
First, allow me to thank the Committee for its long-standing,
bipartisan support for scientific research. Strong, sustained funding
for all U.S. science agencies is essential if we are to make progress
toward improving the health and economic competitiveness of the Nation.
COSSA serves as a united voice for a broad, diverse network of
organizations, institutions, communities, and stakeholders who care
about a successful and vibrant social science research enterprise. We
represent the collective interests of all STEM disciplines engaged in
the rigorous study of why and how humans behave as they do as
individuals, groups and within institutions, organizations, and
society.
national institutes of health
COSSA joins the more than 300 stakeholder organizations in support
of $41.6 billion for the National Institutes of Health (NIH) in fiscal
year 2020. COSSA appreciates the Subcommittee's leadership and its
long-standing bipartisan support of NIH, especially during difficult
budgetary times. There are, however, ongoing and emerging health
challenges confronting the United States and the world, which COSSA
believes merits continued investment in the NIH. This funding level
would enable real growth over biomedical inflation, an important step
to ensuring stability in the U.S. research capacity over the long term.
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 the behavioral
influences on health is a crucial component in the Nation's battles
against the leading causes of morbidity and mortality, namely, obesity,
heart disease, cancer, AIDS, diabetes, age-related illnesses,
accidents, substance abuse, and mental illness. The fundamental
understanding of how disease works, including the impact of social
environment on disease processes, underpins our ability to conquer
devastating illnesses. We urge Congress to emphasize support for OBSSR
and encourage NIH to increase the Office's budget in fiscal year 2020.
centers for disease control and prevention
COSSA urges the Subcommittee to appropriate $7.8 billion for the
Centers for Disease Control and Prevention (CDC), including $175
million for CDC's National Center for Health Statistics (NCHS). As the
country's leading public health and health surveillance agency, the CDC
works with State, local, and international partners to keep Americans
safe and healthy. Social and behavioral science research plays a
crucial role in helping the CDC carry out this mission by informing the
CDC's behavioral surveillance systems, public health interventions, and
health promotion and communication programs that help protect Americans
and people around the world from disease. As the Department of Health
and Human Services' principal statistical agency, NCHS produces data on
all aspects of our healthcare system, including opioid and prescription
drug use, maternal and infant mortality, chronic disease prevalence,
healthcare disparities, emergency room use, health insurance coverage,
teen pregnancy, and causes of death. As a result of the rising costs of
conducting surveys and years of flat or near-flat funding, NCHS has had
to focus nearly all of its resources on continuing to produce the high-
quality data that communities across the country rely on to understand
their health. Additional funding would allow NCHS to respond to rising
costs, declining response rates, and an ever-more complex healthcare
system and capitalize on opportunities surrounding advances in
statistical methodology, big data, and computing to produce better
information more quickly and efficiently, while reducing the reporting
burden on local data providers.
agency for healthcare research and quality
COSSA urges the Subcommittee to appropriate $460 million for the
Agency for Healthcare Research and Quality (AHRQ). This funding level
would allow AHRQ to rebuild portfolios terminated as a result of years
of past cuts and expand its research and training portfolio to address
our Nation's pressing and evolving healthcare challenges. Additionally,
with a quarter of the agency's program level budget supported by the
Patient-Centered Outcomes Research Trust Fund, a strong investment in
the AHRQ appropriation will be essential to sustain the agency's core
activities as the Trust Fund undergoes reauthorization this year. AHRQ
funds research on improving the quality, safety, efficiency, and
effectiveness of America's healthcare system. It is the only agency in
the Federal Government with the expertise and explicit mission to fund
research on improving healthcare at the provider level (i.e., in
hospitals, medical practices, nursing homes, and other medical
facilities). Its work is complementary-not duplicative-of other HHS
agencies. COSSA urges the Committee to ensure robust support for AHRQ's
critical health services research.
bureau of labor statistics
COSSA urges the Subcommittee to appropriate $655 million for the
Bureau of Labor Statistics (BLS) for its core programs. The Bureau of
Labor Statistics produces economic data that are essential for
evidence-based decisionmaking by businesses and financial markets,
Federal and local officials, and households faced with spending and
career choices. The BLS, like every Federal statistical agency, must
modernize in order to produce the gold standard data on jobs, wages,
skill needs, inflation, productivity and more that our businesses,
researchers, and policymakers rely on so heavily. The requested funding
level would restore less than half of BLS' loss in budget due to
inflation since fiscal year 2009, but would allow BLS to continue to
support evidence-based policymaking, smart program evaluation, and
confident business investment.
institute of education sciences
COSSA requests $670 million for the Institute of Education Sciences
(IES) in fiscal year 2020. As the research arm of the Department of
Education, IES supports research and data to improve our understanding
of education at all levels, from early childhood and elementary and
secondary education, through higher education. Research further
examines special education, rural education, teacher effectiveness,
education technology, student achievement, reading and math
interventions, and many other areas. IES-supported research has
improved the quality of education research, led to the development of
early interventions for improving child outcomes, generated and
validated assessment measures for use with children, and led to the
establishment of the What Works Clearinghouse for education research,
highlighting interventions that work and identifying those that do not.
With increasing demand for evidence-based practices in education,
adequate funding for IES is essential to support studies that increase
knowledge of the factors that influence teaching and learning and apply
those findings to improve educational outcomes.
international education and foreign language programs
The Department of Education's International Education and Foreign
Language programs play a major role in developing a steady supply of
graduates with deep expertise and high-quality research on foreign
languages and cultures, international markets, world regions, and
global issues. COSSA urges a total appropriation of $106.1 million
($95.7 million for Title VI and $10.5 million for Fulbright-Hays) for
these programs, which would help make up for lost investment and
purchasing power after five fiscal years of flat-funding. In addition
to broadening opportunities for students in international and foreign
language studies, such support would also strengthen the Nation's human
resource capabilities in strategic areas of the world that impact our
national security and global economic competitiveness.
Thank you for the opportunity to present this testimony on behalf
of the social and behavioral science research community.
[This statement was submitted by Wendy Naus, Executive Director,
Consortium of Social Science Associations.]
______
Prepared Statement of the Council of Academic Family Medicine
The member organizations of the Council of Academic Family Medicine
(CAFM) are pleased to submit testimony on behalf of programs under the
jurisdiction of the Health Resources and Services Administration (HRSA)
and the Agency for Healthcare Research and Quality (AHRQ). CAFM
collectively includes family medicine medical school and residency
faculty, community preceptors, residency program directors, medical
school department chairs, research scientists, and others involved in
family medicine education. We urge the Committee to appropriate at
least $59 million for the Primary Care Training and Enhancement
program, authorized under Title VII, Section 747 of the Public Health
Service Act HRSA. In addition, we recommend the Committee fund the AHRQ
at a level of at least $460 million and $5 million dedicated to AHRQ's
Center for Primary Care Research.
More than 44,000 primary care physicians will be needed by 2035,
and current primary care production rates will be unable to meet the
demand, according to the authors of a recent article in Annals of
Family Medicine (Petterson, et al Mar/Apr 2015). The primary care
training and enhancement programs and AHRQ research enhance our
Nation's workforce and health infrastructure, improving primary care
services that produce better health outcomes and reduce healthcare
costs.
primary care training and enhancement--title vii
The Primary Care Training and Enhancement Program (Title VII,
Section 747 of the Public Health Service Act) has a long history of
funding training of primary care physicians. As experimentation with
new or different models of care continues, departments of family
medicine and family medicine residency programs will rely further on
Title VII, Section 747, grants to help develop curricula and research
training methods for transforming practice delivery. Future training
needs include: training in new clinical environments that include
integrated care with other health professionals (e.g. behavioral
health, care coordination, nursing, oral health); development and
implementation of curricula to give trainees the skills necessary to
build and work in inter-professional teams that include diverse
professions; and development and implementation of curricula to develop
leaders and teachers in practice transformation. Moreover, new
competencies are required for our developing health system.
The Advisory Committee on Training in Primary Care Medicine and
Dentistry December 2014 report states that ``[r]esources currently
available through Title VII, Part C, sections 747 and 748 have
decreased significantly over the past 10 years, and are currently
inadequate to support the [needed] system changes.'' \1\ In order to
address some of these challenges, the Advisory Committee recommended
that Congress increase funding levels for training under the primary
care training health professions program to meet the pent-up demand
caused by reduced and stagnant funding levels. We are pleased that
Congress increased spending for primary care training and enhancement
in fiscal year 2018 and continued such funding in fiscal year 2019. We
are hopeful that the Committee will realize the need for continued and
increased funding to allow for a more extensive support across the
Nation for schools and residency programs whose trainees are on the
forefront of addressing challenges in primary care.
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\1\ http://www.hrsa.gov/advisorycommittees/bhpradvisory/actpcmd/
Reports/eleventhreport.pdf.
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Primary care health professions training grants under Title VII are
vital to the continued development of a workforce designed to care for
the most vulnerable populations and meet the needs of the 21st century.
We urge your continued down payment for this program and an increase in
funding levels to $59 million in fiscal year 2020 to allow for a robust
competitive funding cycle.
This funding level will help continue important Title VII programs
such as The Preparing Primary Care Trainees to Transform Health Care
Systems program at the Kirksville College of Osteopathic Medicine in
Missouri. This program uses grant funding to create enhanced primary
care didactics, contextual clinical learning activities and assessments
and leadership tracks to prepare students and facility for practice in
changing and diverse health systems.
agency for health care research and quality
Primary care clinical research is a core function of AHRQ. Primary
care research includes: translating science into patient care, better
organizing healthcare to meet patient and population needs, evaluating
innovations to provide the best healthcare to patients, and engaging
patients, communities, and practices to improve health. AHRQ has proved
to be uniquely positioned to support best practice primary care
research and to help disseminate the research nationwide. However,
reduced levels of AHRQ funding in the past have exacerbated disparities
in funding primary care research. 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 Primary Care Research.
With funding increased for fiscal year 2019 to $338 million, AHRQ
is in a unique position to further primary care clinical research as
well as the implementation science to identify how to deploy new
knowledge into the hands of primary care providers and systems in
communities. However more funding is needed to accomplish these goals.
For this reason, we are supporting additional overall funding increases
for fiscal year 2020 as well as specific funding for the Center for
Primary Care Research of $5 million to help coordinate and direct
primary care research funding at AHRQ. We hope additional funding will
continue and expand the following goals: (1) development of clinical
primary care research and researchers (2) real world application of
evidence, (3) the process of practice and health system transformation,
(4) how high functioning primary care systems and practices should
look, (5) how primary care practices serving rural and other
underserved populations adapt and survive, and (6) how health extension
systems serve as connectors of research institutions with practices and
communities.
AHRQ research is used by practices and universities across the
Nation. This funding level will help continue important programs such
as the one at University of Washington. The University of Washington
used funding from AHRQ to develop a system to incorporate Patient-
Reported Outcomes (PRO) into clinical assessments and decisionmaking
leading to improved patient-provider communication, patient
satisfaction, and treatment monitoring. The project employs systems
engineering methods, human-centered design, and mixed-research methods
to develop more effective integration of PRO data into patient care
activities through health information technology.
Highlighting the success of AHRQ's patient safety initiatives, a
2014 \2\ report showed hospital care to be much safer in 2013 compared
to 2010. The report noted a decline of 17 percent in hospital-acquired
conditions, in harm to 1.3 million individuals, as well as 50,000 lives
saved, and $12 billion in reduced health spending during that period.
AHRQ supports this research that is essential to create a robust system
for our Nation that delivers quality of care while reducing the rising
cost of care.
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\2\ Publication # 15-0011-EF.
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The Administration's fiscal year 2020 budget again proposed
eliminating AHRQ and moving some functions into the National Institutes
of Health (NIH). CAFM supports an alternative approach of a study
described in report language in the fiscal year 2018 spending bill.
It's critical that AHRQ retains its current unique purpose supporting
primary care research.
In conclusion, we support increased funding for AHRQ at the level
of $460 million for fiscal year 2020 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.
[This statement was submitted by Karen Mitchell, MD, Chair, Council
of
Academic Family Medicine.]
______
Prepared Statement of the Council of Chief State School Officers
Dear Chairs Shelby and Blunt and Ranking Members Leahy and Murray:
On behalf of chief State school officers across the country, I am
writing to convey States' priorities for K-12 education in the fiscal
year 2020 appropriations cycle. The Council of Chief State School
Officers (CCSSO) is a nonpartisan, nationwide, nonprofit organization
of public officials who head departments of elementary and secondary
education in the States, the District of Columbia, the Department of
Defense Education Activity, and five U.S. extra-State jurisdictions.
CCSSO provides leadership, advocacy, and technical assistance on major
educational issues.
State education leaders are committed to creating a more equitable
education system for every child. In 2017, CCSSO released Leading for
Equity, a set of ten actions States are committed to taking to improve
educational equity in their States. Across these commitments, States
demonstrate how they can better align Federal, State, and local
resources to advance equity for all students. Funding is a key
component, though not the only component, and State chiefs see the
Federal funding they receive as a significant resource to improve
educational outcomes. For these reasons, we were pleased when Congress
passed a bipartisan fiscal year 2019 funding bill. This legislation
provided critical funding increases for major K-12 education programs,
such as ESEA Title I and the Individuals with Disabilities Act.
As States implement the Every Student Succeeds Act (ESSA), which
reauthorized the Elementary and Secondary Education Act (ESEA) in 2015,
Federal funding is as critical as ever to ensure States can implement
State plans aligned with ESSA with fidelity. This is also true as
States embark on implementing the recently reauthorized Carl D. Perkins
Career and Technical Education Act (CTE).
As stewards of limited resources, State chiefs recognize that every
taxpayer dollar is precious and must be administered efficiently and
effectively to better meet the needs of all students. As States move to
implement ESSA, CTE and other Federal programs, they are also working
to improve State and local stewardship over limited Federal funds to
ensure maximum impact to improve student achievement, particularly for
disadvantaged or traditionally underserved students, as well as
children with disabilities.
CCSSO and our members look forward to working with Congress to
ensure that fiscal year 2020 appropriations provide the resources
needed to improve outcomes for all children in every State, and
emphasize the following K-12 funding priorities:
elementary and secondary education act
Increase funding for ESEA Title I, Part A
Title I, Part A of ESEA is at the core of the Federal-State
partnership in K-12 education. As reauthorized by ESSA, Title I-A
provides increased flexibility for States, while also calling on States
to develop and implement new accountability and school improvement
systems to support academic excellence and reduce achievement gaps.
State chiefs have committed to creating a more equitable education
system for all students, and this is the continued goal and purpose of
Title I Federal funding. During school year 2020-2021, when States and
school districts will be receiving fiscal year 2020 funding, they will
be working to increase achievement and improve student outcomes in
schools that have been identified for support and improvement through
new State accountability systems. It is essential that States and their
districts have the resources needed to bring those efforts to fruition.
To support State leaders in meeting the educational needs of all
students, we urge Congress to fund this critical program at the
authorized level of $16,182,345,000 in fiscal year 2020.
Provide Authorized Funding for ESEA State Assessment Grants
ESSA continues to require that States administer annual assessments
in specified grades in reading or language arts, in mathematics, and in
science. These assessments provide much of the framework for States'
systems of school accountability; that is, they provide the information
that States use to determine which schools are succeeding in educating
all their students to high standards. Yet high-quality assessment can
be resource-intensive, and States continue to rely on Federal
assistance in meeting this important requirement of the reauthorized
statute.
Authorized under Title I of ESEA, State Assessment Grants support
State efforts to develop and implement high-quality assessments to
measure the academic achievement of all students. Under ESSA, States
and school districts may also use these funds to audit assessment
systems in order to reduce unnecessary or duplicative assessments.
According to the Brookings Institution, States spend an estimated $1.7
billion on assessments each year, yet the Federal program pays for $378
million of that cost. State chiefs ask Congress to maintain State
Assessment Grants at the full authorized level of $378,000,000 to
ensure that students are appropriately assessed and effective targeted
instructional supports to improve academic achievement are identified.
Provide Authorized Funding for ESEA Title II, Part A, to Support
Effective Instruction
Under ESSA, every student is required to have a highly effective
teacher. No longer can poor or minority students be disproportionately
served by ineffective or out-of-field teachers. Title II, Part A
funding is critical to support States and local districts in this
important effort.
Communities across the country use flexible Title II-A funds to
develop the workforce they need to best serve their least advantaged
students. New Mexico, for example, uses this funding to provide
professional development and mentorship programs for teachers and
principals in the State's lowest-performing schools. As a result, these
schools have improved proficiency rates for their students in English
Language Arts by 4.5 times the rate of statewide growth and 2.7 times
the statewide growth rate in mathematics. Nevada plans to use Title II-
A funds to modernize its licensure requirements to incorporate
meaningful professional growth and educator effectiveness and make
improvements in the statewide evaluation system to ensure reliability,
validity, fairness, consistency, and objectivity. Massachusetts will
use this funding to review its school districts' use of Federal funds
and make sure that professional development supports more effective
educators, particularly those who serve students with disabilities,
low-income students, and students of color.
These examples of effective uses of Title II-A funding are just a
sample of the efforts States are undertaking to support high-quality
teaching and learning. Chiefs urge Congress to continue to support
these Federal-State partnerships by funding the program at the
authorized level of $2,295,830,000 to increase teacher effectiveness
and support the use of proven strategies to improve learning outcomes.
Preserve Funding for ESEA Title III
English learners (ELs) are a growing population group across
States, and in recent years their enrollment has increased particularly
in States where schools have limited experience in serving them.
Enabling ELs to achieve English language proficiency and achieve to
high standards in the regular, English-speaking classroom, is one of
the key responsibilities given to States by ESSA. Under the
reauthorized statute, States must set goals for ELs' attainment of
English proficiency and incorporate a measure of progress toward that
goal in their systems of school accountability. For this reason, school
year 2019-2020 will be a critical time during which States test all ELs
for proficiency, implement systems for improving educational programs
for the EL population, and provide services and supports to schools
that are not making sufficient progress in that area.
Title III of ESEA funds State and local programs in English
language acquisition for EL and immigrant students. To ensure the
success of States' efforts to improve outcomes for this high-need and
growing population, we recommend that the Congress fund Title III at
the authorized level of $884,960,000.
Adequately Fund ESEA Title IV, Part A, the Student Support and Academic
Enrichment Grant
Title IV, Part A, the Student Support and Academic Enrichment Grant
program, provides Federal support for programs that support a well-
rounded education, safe and healthy students, and education technology.
Newly authorized by ESSA, this program received its first appropriation
of $400 million in fiscal year 2017, followed by an increase to $1.1
billion and $1.2 billion in fiscal year 2018 and fiscal year 2019
respectively.
In addition to using these funds to provide students with a well-
rounded education, States have committed to ensuring student safety by
focusing on school culture, climate, and social-emotional development.
To keep students safe, State leaders recognize this work takes multiple
approaches such as securing school facilities and a strong focus on how
to deepen and strengthen communities. Title IV is particularly critical
as States and local communities seek to improve school safety; it
remains critically important that we support State and local leaders in
providing safe, supportive school environments for all students, and we
urge Congress to fund Title IV, Part A at the authorized level of $1.6
billion.
Adequately Fund ESEA Title IV, Part B, 21st Century Community Learning
Centers
One way in which State chiefs have worked to strengthen students'
relationships with their communities is through afterschool programs.
Chiefs urge Congress to adequately fund 21st Century Community Learning
Centers so students have the supports they need outside of the
classroom to ensure success in school and in life. This program
provides students with activities to enhance their academic, social,
and overall development during their out-of-school time. Approximately
1.9 million students benefit from these programs in schools, libraries,
and communities across the country. Data show that students who
participate in these programs miss fewer days of school, have fewer
out-of-school suspensions, increase their chances of graduating, and
are more likely to continue their education after high school. Congress
should fund this program at no less than $1,211,673,000, the amount
provided in fiscal year 2019.
Support Statewide Longitudinal Data Systems
Statewide Longitudinal Data Systems (SLDS) funding has helped State
education agencies provide State leaders, district administrators,
educators, and the education community with high-quality data on
student achievement and other student outcomes and on school
performance. States use these funds to create more efficient and
effective data systems, including new ESSA requirements such as
reporting on homeless, foster, and military-connected youth, and per-
pupil expenditure at the school level. For example, one State used SLDS
grants to streamline the data collection process that school districts
must navigate annually, thereby reducing administrative burden. Through
automation this State has saved over $500,000 annually on a single data
collection requirement. These savings are driven into more important
services locally, such as teaching and learning activities. Meanwhile,
another State used an SLDS grant to develop and implement a custom
technology tool to provide educators with near real-time data to help
inform instruction. Chiefs urge Congress to build on these and similar
successes by funding this program at least at the fiscal year 2019
level of $32,281,000.
carl d. perkins career and technical education act
Adequately Fund the Carl D. Perkins Career and Technical Education Act
States are leading efforts to ensure that students graduating from
high school are prepared to enroll in postsecondary education or enter
the workforce with industry-recognized certifications or credentials
that can lead them to a well-paying career. In partnership with
JPMorgan Chase, Advance CTE and Education Strategy Group, CCSSO is
leading the New Skills for Youth Initiative and working with States to
increase the number of students who graduate prepared to compete in an
evolving job market. To support State leaders as they implement the
recently passed Perkins Act and produce graduates who are both college-
and career-ready and ensure all students have access to pathways that
prepare them for the workplace of tomorrow, chiefs urge Congress to
appropriate at least $1,262,598,000 for the Perkins Career and
Technical Education State Grants program, consistent the President's
proposed budget.
individuals with disabilities education act
Invest in the Individuals with Disabilities Education Act
IDEA (Individuals with Disabilities Education Act), Part B supports
State and local programs for students with special needs. IDEA funding
can also be used to provide more comprehensive supports that benefit
all students, such as implementing a universal design for learning
curriculum, planning and implementing new learning environments to
support all learners in an inclusive setting, or purchasing curriculum-
based screening and progress monitoring instruments. While ideally the
Federal Government would meet the statutory objective of funding 40
percent of the additional costs of educating students with
disabilities, we understand that even with higher spending caps this is
a challenging goal under current circumstances. In the fiscal year 2019
funding bill, Congress appropriated $12.3 billion for IDEA, a
significant increase over previous years, but still far short of the
Federal commitment. Therefore, chiefs ask Congress to increase the
Federal Government's share of the excess costs of special education
services to about 15 percent, or $12,850,000,000 for IDEA to strengthen
services for our students with disabilities.
Thank you for considering the appropriations priorities of chief
State school officers and the students they serve. As States move to
advance equity in the public education system and implement ESSA and
other key Federal and State programs, it is imperative that the Federal
Government remain a key partner in supporting the work underway in
States to provide the necessary resources to meet the needs of all
students, particularly students who have been traditionally underserved
by our education system.
Sincerely.
[This statement was submitted by Carissa Moffat Miller, Executive
Director, Council of Chief State School Officers.]
______
Prepared Statement of the Council of State and Territorial
Epidemiologists
I am Janet Hamilton, Director of Science and Policy at the Council
of State and Territorial Epidemiologists (CSTE). CSTE is organization
of 56 member States and territories representing applied public health
epidemiology and serves as the professional home for 2,000 applied
public health epidemiologists nationwide. As the subcommittee works on
the fiscal year 2020 Labor, Health and Human Services, Education and
Related Agencies appropriations bill, we respectfully request that you
appropriate $100 million in fiscal year 2020 to the Centers for Disease
Control and Prevention's (CDC) Public Health Scientific Services for a
new, cross-cutting initiative that will transform public health and
save lives.
This initial down payment, as part of a $1 billion investment over
the next decade, would allow CDC, State, local, tribal, and territorial
health departments to move from sluggish, manual, paper-based data
collection to seamless, automated, interoperable, and secure data
systems that yield critical health information in real-time. This
funding would also support efforts to modernize the public health
workforce by training, recruiting (e.g., student loan repayment and
fellowships), and retaining skilled data scientists. Data systems
require adept staff to use them, maintain them, interpret the data, and
develop and deploy actionable public health interventions to save
lives.
Whether it's Ebola, dengue, lead, wildfires, or tornados, public
health threats are persistent and consistently evolving here at home
and overseas. Effective prevention and efficient, timely, responses
rely on an interactive network of governmental public health agencies
at the Federal, State, local, tribal, and territorial levels working
with healthcare providers and the public. Each day, this cooperative
network saves lives by detecting and responding to health threats, like
E. coli contaminated lettuce, measles, influenza, opioid overdoses,
Zika, and more.
Unfortunately, the Nation's public health data systems are
antiquated, rely on obsolete information sharing methods, and are in
dire need of security upgrades. Lack of interoperability, reporting
consistency, and data standards leads to errors in quality,
completeness, timeliness, and communication. Sluggish, manual
processes-paper records, phone calls, spreadsheets, and faxes requiring
manual data entry-still in widespread use have important consequences,
most notably delayed detection and response to public health treats of
all types: chronic, emerging, and urgent. Rapid advances in data
science and evolving cybersecurity threats demand public health
professionals with new skills to protect, defend privacy, and securely
integrate health data.
In my experience on the front lines of public health emergency
detection, prevention, and response as a Florida epidemiologist during
the 2009 H1N1 influenza pandemic, locally acquired dengue outbreak,
Deepwater Horizon Gulf oil spill, multistate fungal meningitis
outbreak, Zika, 11 major hurricanes, the opioid epidemic, and now in my
role representing State and local epidemiologists nationwide, I have
seen first-hand and heard from colleagues about the challenges and
frustrations with the current data infrastructure. For example:
--My colleague in Pennsylvania, working in concert with CDC and the
Agency for Toxic Substances and Disease Registry (ATSDR), is
responding to a manufacturing plant ``bad actor'' that has
released lead into the air. The community understandably wants
answers about their health: What are our blood levels? How many
people and children have been tested? How do they compare to
other communities? Does my child need to be tested?
Unfortunately, those questions can't be answered with today's
data, because while healthcare facilities have data stored in
electronic medical records, data are sent on paper to the
health department and the stacks take time to enter and
process. Included as an appendix are examples of the millions
of hand-written, paper lead lab reports that I received while
in Florida.
--After the hurricanes in 2017 and 2018, colleagues in North Carolina
and Puerto Rico were asked by policymakers, the media, and the
public about the number of hurricane related deaths--where did
they occur and what populations were most vulnerable? What
immediate steps could be taken to prevent more deaths based on
the data? Unfortunately, because of the lag in paper-based data
systems, neither the North Carolina officials nor the Puerto
Rico officials could give fast, high-quality answers the public
wanted, needed, and expected.
--More recently, a colleague shared a story from the frontlines of
the E. coli lettuce outbreak, where public health professionals
took pictures of their computer screens to share via text
messages images of lab reports from implicated food samples
identifying the linkage to human illness. Why? Because key
electronic data systems storing epidemiologic and laboratory
data had no way to seamlessly share the information and speed
the response.
These modes of data sharing are slow and cumbersome. They are also
vulnerable. With sophisticated cybersecurity threats, it is critical
that public health systems are equipped to prevent and respond to
cyberattacks. Healthcare providers are required to report diseases and
conditions to public health departments. These health records contain
sensitive personal information--required to be reported and protected
by State laws--and they demand significant care in handling to protect
the privacy and safety of patients, particularly since such systems are
frequently the target of hackers.
The Nation's public health infrastructure is so fragmented and
antiquated that healthcare providers who already have the data stored
and collected in electronic health records cannot rapidly share these
health data because public health departments cannot receive them
electronically. This environment leads to an increased burden on
providers to report--or delays and failures to report--and inefficiency
and frustration on the part of both care providers and public health
professionals. It leads to lost time, lost opportunities, and lost
lives. For in any outbreak--where E. coli contaminated lettuce or
Listeria contaminated ice cream must be recalled, where measles
patients need to be isolated to prevent others from becoming infected,
where influenza threatens the lives of pregnant mothers--time matters.
Data matters.
Public health professionals, providers, policymakers, and the
public will all agree that we need more, better, faster, and secure
data to protect health. To date, in our quest for better data, we have
taken a piecemeal, fragmented approach. When a new disease emerges,
such as Zika, Congress has funded standalone data systems at CDC to
support the response. But this funding approach is inconsistent and
doesn't support an invested, sustainable approach in detection and
prevention before an event, instead waiting and allowing multiple
people to become ill because the data is moving slower than the
disease. For example, during the Zika response, emergency funds came to
Florida months after the initial cases were identified. While
Congress's support and funding during emergencies is critical to
support a response, a well-planned, long-term, optimal data collection
and data system management is not 'one and done'.
CSTE and our partners in this effort--the Association of Public
Health Laboratories (APHL), the National Association for Public Health
Statistics and Information System (NAPHSIS), and the Healthcare
Information and Management Systems Society (HIMSS)--together with more
than 80 other institutions representing patients and consumers, public
health professionals, healthcare providers, and health systems believe
the time has come to step up and take a coordinated, comprehensive,
strategic approach to building a public health data super highway of
the 21st Century. This interstate system of systems will seamlessly and
securely collect sensitive data about diseases and conditions from
healthcare providers and report it automatically to public health
departments, link it to other key data--including birth and death
records--and where required to be reported nationally, share that data
seamlessly and securely with CDC. Once built, you can put any ``car''
or data you want on this interstate, whether a ``car'' for opioid,
Zika, or gun violence.
And while our proposed approach to funding this IT modernization is
new, what we're proposing isn't. The data systems that feed this public
health information superhighway already exist, have demonstrated value,
and are used to varying degrees in all State and local public health
departments. What we need is to bring all jurisdictions online with all
of these systems, and to modernize receiving, sharing, and connecting
data that exists in silos. In addition, CDC needs its own secure data
platform to receive data electronically from the States via the
National Notifiable Disease Surveillance System.
CSTE hopes in your ongoing deliberations on fiscal year 2020 and
beyond you will consider the need for a modernized, electronic,
interoperable public health data system and a new generation of skilled
public health data scientists. Data and workforce are the lifeblood of
public health action. We recognize the need for lawmakers to raise
discretionary the caps to avoid devastating spending cuts to public
health and all domestic programs. We also recognize this effort must be
funded with new money, rather than cut already underfunded public
health programs. A robust, sustained commitment to transform today's
public health data system will ultimately improve Americans' health. We
look forward to working with the subcommittee in these endeavors and
hope you will turn to the CSTE as a resource in the future.
addendum
Example.--Lead test results received by the Florida Department of
Health as submitted by a private provider to fulfill required lead test
result reporting, August 2018, January 2019.
Patient information, test results, and reporting provider
information difficult to read and creates delays in identifying the
patient as well as recording the data in the health departments data
system necessary to identify any community increases in blood lead,
respond and implement control measures. While these examples are lead
data, data across all diseases and conditions are regularly submitted
and received via paper by private providers to public health.
[This statement was submitted by Janet Hamilton, Director, Science
and Policy, Council of State and Territorial Epidemiologists.]
______
Prepared Statement of Council on Social Work Education
On behalf of the Council on Social Work Education (CSWE), I am
pleased to offer this written testimony to the Senate Appropriations
Subcommittee on Labor, Health and Human Services, Education, and
Related Agencies. CSWE is a nonprofit national association representing
more than 2,500 individual members and more than 800 baccalaureate and
master's programs of professional social work education. CSWE asks the
Committee to consider the following funding requests:
------------------------------------------------------------------------
Agency Account Program Funding Requested
------------------------------------------------------------------------
HHS HRSA Behavioral Health $90 million
Workforce
Education and
Training Grant
Program.
HHS HRSA Scholarships for $53.47 million
Disadvantaged
Students.
DHHS HRSA Geriatrics $51 million
Programs.
HHS SAMHSA Minority $15.169 million
Fellowship
Program.
HHS HRSA New authorized $10 million
demonstration to
strengthen mental
and substance use
disorders
workforce.
HHS HRSA New Loan Repayment $25 million
Program for
Substance Use
Disorder
Treatment
Workforce.
HHS HRSA Mental and $36.916 million
Behavioral Health
Programs.
ED N/A Pell Grant........ $6,345 for the
maximum Pell
Grant
ED N/A GAANN............. $48 million
ED N/A Public Service Increase support
Loan Forgiveness for the PSLF
(PSLF). program
HHS NIH Overall Funding At least $41.6
for NIH. billion
------------------------------------------------------------------------
hrsa title vii health professions programs
CSWE urges the Committee to provide $455.47 million in fiscal year
2020 for the health professions education programs authorized under
Title VII of the Public Health Service Act and administered through the
Health Resources and Services Administration (HRSA). These programs
support the development of a healthcare workforce, including in
underserved areas and populations. Through stipends, as well as grants
and contracts to academic institutions and nonprofit organizations,
Title VII programs develop a workforce that reflects the population it
serves, while providing high-quality care and improving access to care
for all populations, including underserved communities. Components of
these programs include interdisciplinary training, community-based
training, training in public health and preventive medicine, and other
initiatives. Schools and programs of and social work students are
eligible for Title VII health professions programs. Within the Title
VII program, CSWE specifically urges the Committee to provide:
--$90 million for HRSA's Behavioral Health Workforce Education and
Training (BHWET) program. CSWE appreciates the increased
investments in the fiscal year 2019 Labor-H enacted
appropriations for the BHWET program. BHWET supports the
recruitment and education of behavioral healthcare providers,
which is critical as the Nation continues to combat the opioid
crisis and substance use disorders. According to a June 2018
HRSA study, out of the 4,618 behavioral health professionals
participating in the BHWET program, 3,523 included new social
workers.\1\ In 2018, a new 4-year competition awarded social
work programs to help develop and expand the behavioral health
workforce serving populations across the lifespan, including in
rural and medically underserved areas. We hope you will support
$90 million for BHWET in fiscal year 2020.
---------------------------------------------------------------------------
\1\ Closing Behavioral Health Workforce Gaps: A HRSA Program
Expanding Direct Mental Health Service Access in Underserved Areas;
American Journal of Preventive Medicine.
---------------------------------------------------------------------------
--At least $53.47 million for Scholarships for Disadvantaged Students
(SDS), as included in the House Committee's bill. This program
helps increase minority representation in the health
professions. This is essential for the development of a
pipeline of health professionals to meet health needs of
underserved individuals and communities. Furthermore, this
program provides much needed opportunities for students from
disadvantaged backgrounds.
--$10 million for a demonstration program to strengthen the mental
and substance use disorders workforce. CSWE is pleased the 21st
Century Cures Act passed Congress with strong bipartisan
support. Included in the mental health provisions of this bill,
in Section 9022, is a new demonstration program to strengthen
the mental and substance use disorders workforce. Specifically,
this provision would support training for health professions,
including social workers, to provide mental and substance use
disorders services in underserved community-based settings that
integrate primary care and mental and substance use disorders
services. Furthermore, we urge you to specifically State that
social workers are eligible to participate in this program, as
outlined in law.
--$36.916 million for Mental and Behavioral Health programs at HRSA.
CSWE was pleased to see new investments in mental and
behavioral health programs at HRSA to support, recruit, and
train professionals and faculty in the fields of social work,
psychology, psychiatry, marriage and family therapy, substance
abuse prevention and treatment, and other areas of mental and
behavioral health. CSWE urges the Committee to ensure that
funding from this account supports social work either for
education and training.
--$25 million for the Loan Repayment Program for Substance Use
Disorder Treatment Workforce. CSWE was pleased to see programs
to address shortages in the substance use disorder workforce
included in the SUPPORT Act. As one of the largest providers of
professional substance use and mental health services in the
U.S., social workers are in a unique position to impact the
lives of millions of Americans battling addiction. Federal
support for education and training programs is critical to
ensuring our Nation has the proper supply of health
professionals to meet growing demands. We hope you will support
$25 million for this important program in fiscal year 2020.
samhsa minority fellowship program
CSWE urges the Committee to appropriate at least a $2 million
increase for the Minority Fellowship Program (MFP) in fiscal year 2020,
as provided in the House appropriations bill reported out of Committee.
For almost 45 years, the MFP has been increasing the number of
professionals prepared to reduce the effects of substance abuse and
mental illness on America's communities by increasing the number of
individuals trained to work with underrepresented and underserved
racial/ethnic minority persons with or at risk for mental health and/or
substance abuse disorders. CSWE appreciates increased investments in
the MFP in fiscal year 2019 focused on addiction medicine to address
the opioid crisis. CSWE urges Congress to provide at least $15.169
million for MFP in fiscal year 2020 and ensure that increased funding
for the program supports all current grantees.
department of education (ed): student aid programs
CSWE supports full funding to bring the maximum individual Pell
Grant to $6,345 in fiscal year 2020. Pell Grants are foundational in
providing access and affordability to ensure that all students,
regardless of economic situations, can pursue higher education. CSWE
also urges Congress to consider increasing the amount of mandatory
funding that goes to Pell.
The Graduate Assistance in Areas of National Need (GAANN) program
provides graduate traineeships in critical fields of study. We
encourage ED to include social work in the GAANN program to enhance
graduate education opportunities in social work, which will foster a
sustainable health professions workforce. CSWE urges Congress to
support the funding level of $48 million in fiscal year 2020 for the
GAANN program. The request is the inflation adjusted number from the
program's fiscal year 2010 level of $41 million.
CSWE appreciates the support Congress provided for the Public
Service Loan Forgiveness (PSFL) program in fiscal year 2019. CSWE urges
Congress to continue to protect this program and its implementation by
the Department of Education.
national institutes of health: support for research
For fiscal year 2020, CSWE supports $41.6 billion for the National
Institutes of Health (NIH). CSWE thanks Congress for its support of
sustained funding increases for NIH. To build on the advances in
research, CSWE hopes you will support continued investments in
biomedical and health-related research that incorporates the social and
behavioral science research necessary to better understand and address
the needs of high-risk populations including children, minority, and
geriatric populations.
Thank you for the opportunity to express these views. Please do not
hesitate to call on the Council on Social Work Education should you
have any questions or require additional information.
[This statement was submitted by Dr. Darla Spence Coffey,
President, Council on Social Work Education.]
______
Prepared Statement of the Creutzfeldt-Jakob Disease Foundation
Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee:
On behalf of the Creutzfeldt-Jakob Disease (CJD) Foundation, we
appreciate the opportunity to submit this testimony in strong support
for funding of the crucial prion disease work being undertaken by the
Centers for Disease Control in partnership with public health agencies
around the country and the National Prion Disease Pathology
Surveillance Center (NPDPSC).
The CJD Foundation is a patient advocacy organization for those
affected by Prion Diseases. We work closely with families, physicians,
researchers, and public health officials to ensure that all possible
efforts are taken to prevent transmissible forms of the disease. Given
the importance of prion surveillance to public health, we are extremely
disappointed to see that the President's budget proposal would
eliminate the $6 million appropriation to the Centers for Disease
Control and Prevention (CDC) for prion disease. Indeed, the growing
threat posed by Chronic Wasting Disease (CWD) has placed additional
strains on the CDC's limited prion disease resources and warrants a
budgetary increase. As such, we are requesting that the budget for
prion disease surveillance be restored and increased to $8 million to
appropriately deal with emerging prion disease threats occurring within
our borders.
overview
Creutzfeldt-Jakob Disease (CJD), is a rare,100 percent fatal,
degenerative brain disease that causes rapidly progressive dementia,
memory loss, visual disturbances, motor skill impairments, and
involuntary movements. Patients most often progress from initial
symptoms to death in less than a year. CJD, caused by ``prion''
proteins, is transmissible and presently has no treatment or cure.
Approximately 1 in 6,000 individuals die from this disease, however,
the number of unreported and undiagnosed cases remains unclear.
CJD/Prion Disease surveillance receives modest support through the
Centers for Disease Control and Prevention (CDC), Emerging and Zoonotic
Diseases. The Administration's budget has proposed eliminating Prion
Disease Surveillance in fiscal year 2020. We need your support to
strengthen and continue the coordination of prion surveillance and to
protect the safety of the American public and the Nation's food supply.
variant cjd and bovine spongiform encephalopathy
One form of Prion Disease in humans, variant CJD (vCJD), is known
to be caused by ingesting beef contaminated with Bovine Spongiform
Encephalopathy (BSE), more commonly known as ``mad cow'' disease. The
most recent U.S. case of variant CJD was announced in 2013 and
confirmed by the National Prion Disease Pathology Surveillance Center
(NPDPSC) in 2014.
Limited BSE testing by the USDA adds another layer to the already
deepening concerns regarding possible risks to humans. In recent years,
the USDA has decreased random testing for BSE from 40,000 to 25,000
tests per year (12,719 tests in 6 months, or 1 test per 3,302 live
cows). Hence, surveillance of BSE in this country is largely dependent
on demonstrating the lack of transmission to humans through human
disease surveillance. The vCJD case identified by NPDPSC in 2014
exemplifies the persistent risk for vCJD acquired in unsuspected
geographic locations and highlights the need for continuing prion
surveillance and awareness to prevent further dissemination of vCJD.
chronic wasting disease
Most recently, emerging laboratory data show that a prion disease
of deer and elk called Chronic Wasting Disease (CWD) could potentially
transmit to humans and other mammals, posing a new threat to public
health. Human surveillance through brain tissue examination is the only
way to definitely diagnose human prion diseases, determine their
origin, and determine whether the spread of CWD found in elk and deer
in 24 States in the U.S. and in 2 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. Additionally, multiple lines of
experimental evidence indicate that sheep and cows are susceptible to
CWD. Since CWD has been proven to cross the species barriers, this
opens up the possibility of oral transmission to humans as well, either
directly by eating contaminated venison or indirectly through infected
domestic animals.
Additional concerns include widespread and long-term prion
contamination of the environment given that prions can persist for
decades and the vector of this illness (e.g., deer) are free ranging
animals that are difficult to impossible to cull. Continued prion
disease surveillance, particularly through examination of human brain
tissue, is imperative to evaluate whether CWD has or can spread to
humans. If transmissible to humans, the possibility of transmission
between individuals via blood transfusions must also be investigated as
transmission through blood is known to occur in vCJD. Hence now is not
the time to remove funding for prion disease surveillance, rather it
should be increased to appropriately deal with these emerging threats.
The NPDPSC, funded by the CDC and located at Case Western Reserve
University in Cleveland, Ohio, is our line of defense against the
possibility of an undetected U.S. human prion disease epidemic as
experienced in the United Kingdom.
We ask for Congressional support in increasing the National Prion
Disease Pathology Surveillance Center's (NPDPSC) appropriation for
fiscal year 2020 by $2 million, for a total of $8 million. This would
allow the NPDPSC to meet increasing autopsy costs and continue to
develop more efficient detection methods while providing an acceptable
level of human prion disease surveillance. Reduction of funding to the
NPDPSC would eliminate an important safety net to U.S. public health,
making the U.S. the only industrialized country lacking prion
surveillance, which in turn would jeopardize the export of U.S. beef.
The increase in funding would allow the NPDPSC to expand its scope to
address the growth in Chronic Wasting Disease (CWD) among deer and elk,
and explore whether CWD could spread to humans.
national prion disease pathology surveillance center
The NPDPSC is funded entirely by the CDC from funds allocated by
Congress. The CDC traditionally keeps approximately half of the
appropriation for CDC and State public health activities, and half goes
to the NPDPSC.
Increasing the appropriation from $6.0M to $8.0M will allow the
NPDPSC to persist and continue to develop more efficient detection
methods while providing an acceptable level of prion surveillance.
Acceptable national prion surveillance would not be possible at a lower
level of funding. The requested $2.0M addition to the appropriation
(total of $8.0M) would enable the NPDPSC to increase surveillance,
tissue collection, diagnostics and diagnostic test development of prion
disease cases from CWD endemic States to determine whether CWD is
transmissible to humans and if so, to what extent this poses to public
health (e.g., transmission risks from human to human).
The National Prion Disease Pathology Surveillance Center is the
only organization in the U.S. that monitors human prion diseases and is
able to determine whether a patient acquired the disease through the
consumption of prion contaminated beef (``mad cow'' disease) or meat
from elk and deer affected by chronic wasting disease (CWD).
The NPDPSC also monitors all cases in which a prion disease might
have been acquired by infected blood transfusion, from the use of
contaminated surgical instruments or from contaminated human growth
hormone. Because standard hospital sterilization procedures do not
completely inactivate prions that transmit the disease, these incidents
put a number of patients under unnecessary risk and required costly
replacement of contaminated surgical equipment.
The NPDPSC also plays a decisive role in resolving suspected cases
or clusters of cases of food-acquired prion disease that are often
magnified by the media, stirring intense public alarm. To date, the
NPDPSC has examined over 6,850 suspected incidents of suspected prion
diseases and has definitely confirmed presence and type of prion
disease in more than 4,100 cases.
The NPDPSC represents the primary line of defense in safeguarding
U.S. public health against prion diseases because the United States--
unlike other BSE affected countries such as the United Kingdom, the
European Union, and Japan--does not have a sufficiently robust animal
prion surveillance system.
The NPDPSC's work offers assurances, to countries that import (or
are considering importing) meat from the United States, that the U.S is
free of indigenous human cases of ``mad cow'' disease. In recent years,
South Korean and Chinese health officials resumed importation of U.S.
beef to their country after a visit to the NPDPSC provided assurances
regarding rigorous human prion surveillance.
Thank you for the opportunity to submit this testimony.
[This statement was submitted by Deborah R. Yobs, President/
Executive Director, CJD Foundation and Brian S. Appleby, M.D., Medical
Director, CJD Foundation, and Director, National Prion Disease
Pathology Surveillance Center.]
______
Prepared Statement of the Cure Alzheimer's Fund
Chairman Blunt, Ranking Member Murray, and members of the Senate
Labor, Health & Human Services, Education, and Related Agencies
Appropriations Subcommittee, I am Tim Armour, President and CEO of Cure
Alzheimer's Fund. I want to thank Congress for past funding for
Alzheimer's disease research at the National Institutes of Health
(NIH), and to submit this written testimony to respectfully request at
least an additional $350 million in fiscal year 2020 above the final
enacted amount for fiscal year 2019 for Alzheimer's disease research at
the NIH.
Cure Alzheimer's Fund is a national nonprofit, based in
Massachusetts, that funds research throughout the United States and
Internationally, starting with the genetic aspects of Alzheimer's
disease. Since its founding 15 years ago, Cure Alzheimer's Fund has
supported close to $90 million in research through nearly 400 projects.
These Cure Alzheimer's Fund supported projects are most often early
stage research that are investigating novel ideas. Cure Alzheimer's
Fund has supported research ideas that have become more widely accepted
such as vascular dysfunction and blood brain barrier impairments, the
role of immune cells like microglia in the brain, and three-dimensional
models to better exhibit brain changes and disease progression.
A sustained Federal investment, as the one established by this
Subcommittee in recent years, allows Cure Alzheimer's Fund to support
initial research that can then be supported by larger grants from the
NIH. Continued investment in NIH presents opportunities for new ideas
and researchers to be able to secure funding necessary for continued
progress in unlocking the secrets of Alzheimer's disease.
This Subcommittee has demonstrated its commitment to Alzheimer's
disease research at NIH through recent increases in the NIH budget. And
for this commitment, Cure Alzheimer's Fund expresses its thanks and
appreciation.
The ongoing support from this Subcommittee allows for organizations
such as Cure Alzheimer's Fund to focus on early-stage research knowing
that researchers will be able to seek NIH funder at a scale larger than
Cure Alzheimer's Fund offers for individual projects. The ``hand-off''
from Cure Alzheimer's Fund to NIH is an important part of the process
to getting therapeutic interventions tested, validated, and ultimately
into the clinic to change the course of the disease for the millions of
Americans and individuals around the world who are afflicted.
The continued Federal investment has allowed new ideas to be
pursued. Ideas such as the role of viruses such as herpes in the
development of Alzheimer's disease. Two independent studies supported
by both NIH and Cure Alzheimer's Fund at the Icahn School of Medicine
at Mount Sinai in New York and at Massachusetts General Hospital
Harvard Medical School showed similar results.
https://www.cell.com/neuron/fulltext/S0896-6273(18)30421-5.
https://curealz.org/news-and-events/evidence-of-the-link-between-
alzheimers-and-herpes-continues-to-grow/.
This type of independent, but collaborative research is vital to a
better understanding of a disease as complex as Alzheimer's disease.
Additional resources have allowed research to be conducted into
areas that will benefit not only patients living with Alzheimer's
disease, but other neurological conditions as well. The role of
neuroinflammation is gaining better understanding of its place in the
development of Alzheimer's disease. There is growing consensus that to
develop Alzheimer's disease, there needs to be an accumulation of beta
amyloid, tau tangles, and neuroinflammation. Research supported by Cure
Alzheimer's Fund is showing the role of neuroinflammation in other
neurological conditions as well.
https://www.sciencedaily.com/releases/2018/07/180730145418.htm.
The relationship between Alzheimer's disease and other neurological
conditions can be seen in the research being conducted into the
possible application of a stroke medicine in preventing Alzheimer's
disease. The drug currently in clinical trials to help the brain
recover from stroke may also be able to help prevent Alzheimer's
disease.
https://curealz.org/news-and-events/a-stroke-drug-in-clinical-
trials-may-have-application-for-alzheimers-disease/.
As we learn more about the brain, we also learn more about
Alzheimer's disease and visa-versa. Research is being conducted into
the role of the lymphatic system in helping to clear the brain of
debris. Jonathan Kipnis received the NIH Director's Pioneer Award for
this research.
https://curealz.org/news-and-events/a-new-discovery-the-brain-has-
a-drain-to-remove-debris/.
https://news.virginia.edu/content/uvas-jonathan-kipnis-receives-
prestigious-nih-directors-pioneer-award.
Showing that the path to a cure for Alzheimer's disease may come
from seemingly unlikely places, Cure Alzheimer's Fund supports research
being conducted by Beth Stevens at Children's Hospital, Boston. Dr.
Stevens' work on the development and elimanation of synapses at the
early stages of brain development is being used to better understand
this process at later stages in life. This research can be beneficial
for not only Alzheimer's disease patients, but also for younger
patients living with Autism Spectrum Disorders.
https://curealz.org/research/foundational-genetics/microglial-
heterogeneity-and-transcriptional-state-changes-in-alzheimers-disease/.
Cure Alzheimer's Fund believes in funding science and research that
has the best potential for leading us to a cure for Alzheimer's
disease. This las lead Cure Alzheimer's Fund to supporting researchers
such as Jonathan Kipnis and Beth Stevens who would not be considered
traditional Alzheimer's disease researchers. Additionally, Cure
Alzheimer's Fund has funded computer scientists who are working on the
issues of data analysis. This becomes more important as more data sets
are developed and need to be fully interpreted and understood.
https://curealz.org/researchers/andreas-pfenning/.
Cure Alzheimer's Fund is also supporting engineering efforts to
help translate the scientific discoveries from the laboratory into
practical tools to be used to further work toward a cure.
https://curealz.org/researchers/stephen-wong/.
Collaborations and supporting novel research are vital to a better
understanding of the pathology of Alzheimer's disease and working
toward a cure. The field has learned a great deal about Alzheimer's
disease in the last few years, and this has been made possible because
of the increased and sustained Federal investment in Alzheimer's
disease research. If this continued commitment to increasing investment
in Alzheimer's disease research is stopped or slowed, progress would
not only be stopped or slowed, but even worse, it could retreat.
Researchers who are considering focusing on Alzheimer's disease could
leave the field. Researchers who are supported by organizations like
Cure Alzheimer's Fund will have their initial data sets and proof of
concept, but will not be able to secure the larger scale funding from
NIH necessary to take their research to the next level.
Progress is being made in the fight against Alzheimer's disease.
Partnerships between private organizations and NIH are leading to
further discoveries and confirmation of theories. It is an exciting
time in Alzheimer's disease research. This excitement is in no small
part a result of the continued and sustain increased investment in
Alzheimer's disease research supported and championed by this
Subcommittee.
Cure Alzheimer's Fund thanks the Subcommittee for its continuing
commitment to increasing funding for Alzheimer's disease. Cure
Alzheimer's Fund values its partnership with NIH in Alzheimer's disease
research, and the support of this Subcommittee has made that
partnership more effective.
Thank you for the opportunity to submit this written testimony and
to respectfully request at least an additional $350 million above the
final enacted level in fiscal year 2019 for fiscal year 2020 for
Alzheimer's disease research at NIH. Cure Alzheimer's Fund has worked
closely with the Subcommittee in the past, and looks forward to being
your partner as we work toward Alzheimer's disease research having the
necessary resources to end this awful disease.
[This statement was submitted by Timothy Armour, President and CEO,
Cure Alzheimer's Fund.]
______
Prepared Statement of Cure SMA
Cure SMA, the largest non-profit organization in the United States
dedicated to the treatment and cure of spinal muscular atrophy (SMA),
is grateful for the opportunity to submit written testimony on the
critical importance of providing increased funding for the newborn
screening (NBS) programs administered by HHS through the Health
Resources Services Administration (HRSA) and the Centers for Disease
Control and Prevention (CDC), and for the opportunity to request much
needed funding for biomedical research for SMA at the National
Institutes of Health (NIH) and its sub-agencies.
sma overview
SMA is an autosomal recessive neuromuscular disease caused by a
mutation in the Survival Motor Neuron 1 (SMN1) gene that affects
approximately 1 in 11,000 live births in the U.S., and an estimated 1
in 50 Americans is a genetic carrier. In a healthy individual, this
gene produces a protein that is critical to the function of the nerves
that control muscles. Without this protein, those nerve cells cannot
function and eventually die, leading to debilitating and often fatal
muscle weakness that robs patients of their ability to walk, eat,
swallow or even breathe. However, SMA does not impact a patient's
cognitive functioning.
Fortunately, there is an FDA-approved treatment, Spinraza, which
became commercially available in December 2016. Administered through
periodic intrathecal injections, it stimulates the SMN2 gene to act as
a back up to the malfunctioning SMN1 gene and produce the protein
needed for healthy muscle function. However, it cannot repair damaged
motor neurons, only prevent or slow down damage, and therefore the
treatment regime must begin as soon as possible.
Additionally, the FDA very recently approved another treatment,
Zolgensma. This gene therapy replaces the faulty SMN1 gene with a
healthy one, which then produces the necessary proteins. It is
administered in a one-time IV dose, and like Spinraza, has shown the
most benefits when administered as early as possible.
Recognizing the importance of early diagnosis and treatment in SMA,
Health and Human Services Secretary Alex Azar added SMA to the
Recommended Uniform Screening Panel (RUSP) last summer. The RUSP is a
list of conditions that States are encouraged to include in their
newborn screening (NBS) testing panels. As of May 2019, six States are
permanently screening all newborns for SMA, and several others are
expected to begin very shortly.
newborn screening
As mentioned above, early diagnosis is crucial to the best possible
health outcome for someone with SMA. Ideally, treatment should start
before symptoms appear, making NBS an important part of SMA care.
Unfortunately, State programs are often slow to add new conditions to
their testing panels because they lack the necessary funding and other
resources. Given this, the number of conditions an infant is screened
for at birth still varies greatly among States, creating a vast
disparity in the quality of life and survival for children born in some
States as compared to others.
In 2008, Congress enacted the Newborn Screening Saves Lives Act
(NBBSLA) to reauthorize and expand the role of the Health Resources and
Services Administration's (HRSA) Advisory Committee on Heritable
Disorders in Newborns and Children program in developing national NBS
guidelines, and to assist States in implementing comprehensive
screenings. Prior to the law's passage, the number and quality of NBS
tests varied greatly from State to State. Additionally, there was
little to no guidance for States on the quality and validity of tests
adopted for the screening of particular conditions.
While this law, and its 2014 reauthorization, have made tremendous
strides in evening out this disparity, it still exists. States
desperately need Federal resources to add the new equipment and staff
needed to screen for new conditions, train staff on these new tests,
and to establish the necessary follow up procedures should an infant
test positive for a condition. In the case of SMA, several States have
either passed legislation or taken regulatory action to add the
condition to their panel but are unable to implement this screening
because of a lack of resources.
Because newborn screening is so critical to effective treatment of
SMA, we respectfully request the following:
HRSA Heritable Disorders Program: We ask Congress to provide $21.88
million in fiscal year 2020 to HRSA's Heritable Disorders Program to
ensure infants born in every State receive rapid identification, early
intervention, and the necessary treatment. In the 2014 reauthorization
of the NBSSLA, Congress recognized the fundamental role of HRSA in
coordinating and supporting a large number of complex activities
including the in-depth scientific review of conditions nominated for
the RUSP that cannot be replaced by programs at the State level.
Furthermore, the agency plays a unique and essential role in
coordinating stakeholders, including clinicians, hospitals, parents,
patients, laboratories and public health professionals.
CDC Newborn Screening Quality Assurance Program: We ask Congress to
provide $29.65 million to the Newborn Screening Quality Assurance
Program (NSQAP) at the Centers for Disease Control and Prevention
(CDC). This program is essential in supporting States in adopting and
implementing new conditions to their testing panels through funding for
laboratory equipment, supplies and staffing, as well as expert analysis
and technical assistance. Such activities are imperative to ensure the
quality and accuracy of these tests. The CDC is the only Federal agency
that works alongside State laboratories to implement new tests and
conduct ongoing work in these labs.
biomedical research
We applaud the recent increases in funding for the National
Institutes of Health and ask that Congress continue this trend by
increasing the fiscal year 2020 appropriation for NIH by $2 billion,
bringing the total to $41.1 billion. We also ask that the National
Institutes of Neurological Disorders and Stroke (NINDS) within NIH be
funded at $2.3 billion, with special consideration to continuing
research on SMA.
Dramatic increases in funding for NIH in recent years, both through
the standard appropriations process and through the passage of the 21st
Century Cures Act, have played a critical role in developing current
SMA treatments, and in establishing the standard of care for SMA
patients. However, much work remains to be done. We are immensely
grateful for these breakthroughs, but we still need more effective and
efficient treatments for all ages and stages of SMA. Both Spinraza and
Zolgensma slow down or prevent motor neuron damage but cannot repair
damage that has already happened. Due to the degenerative nature of
SMA, older patients and those whose condition has worsened will need
additional treatment options.
Within NIH, SMA has been traditionally been funded at a lower level
than other genetic disorders with similar incidence. In order to
improve the health outcomes of all SMA patients, there must be a
continued focus on developing treatments for patients across the
disease spectrum, particularly in adult patients. Congress must
appropriate more funds, and encourage the necessary allocation, so that
NINDS and NIH can continue their work to develop effective treatments
for the entire SMA community.
conclusion
Both robust newborn screening and continuing biomedical research
are critical in the fight against this devastating disease and to
alleviate its physical, emotional and financial impact. Therefore, we
respectfully request $21.88 million for HRSA's Heritable Disorders
Program, $29.65 million to CDC's Newborn Screening Quality Assurance
Program, $41.1 billion for NIH, and $2.3 billion for NINDS.
Again, thank for the opportunity to provide testimony. We look
forward to working with you to improve outcomes for SMA patients and
their families across the Nation. For more information, please contact
Jaimie Vickery, Vice President of Policy and Advocacy for Cure SMA, at
[email protected].
______
Prepared Statement of the Digestive Disease National Coalition
the coalition's fiscal year 2020 l-hhs appropriations recommendations
_______________________________________________________________________
--$7.8 billion in program level funding for the Centers for Disease
Control and Prevention (CDC).
--$50 million for Colorectal Cancer Prevention.
--$134 million for the Division of Viral Hepatitis.
--$1 million for Inflammatory Bowel Disease.
--At least $41.6 billion in program level funding for the National
Institutes of Health (NIH).
--A proportional funding increase for the National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK).
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, as you work to craft fiscal year 2020 appropriations
for the Departments of Labor, Health and Human Services, Education, and
related agencies, please consider the concerns of the digestive disease
community. We hope you will support sustainable funding increases for
the National Institutes of Health and the Centers for Disease Control
and Prevention.
about the coalition
The Digestive Disease National Coalition (DDNC) is an advocacy
organization comprised of the major national voluntary and professional
societies concerned with digestive diseases. DDNC focuses on improving
public policy and increasing public awareness with respect to diseases
of the digestive system. DDNC's mission is to work cooperatively to
improve access to and the quality of digestive disease healthcare in
order to promote the best possible medical outcome and quality of life
for current and future patients.
about digestive diseases
Digestive diseases are disorders of the digestive tract, which
includes the esophagus, stomach, small and large intestines, liver,
pancreas, and the gallbladder; as such, these diseases range from
digestive cancers to functional GI and motility disorders, and
everything in between. Some of these diseases are classified as acute,
as they occur over a short period of time, while others are chronic,
life-long conditions. 60 to 70 million Americans are affected by these
diseases, accounting for 21.7 million hospitalizations and $141.8
billion in healthcare costs.
centers for disease control and prevention
DDNC joins the public health community in asking Congress to
provide the Centers for Disease Control and Prevention (CDC) with $7.8
billion through fiscal year 2020, which includes budget authority, the
Prevention and Public Health Fund, Public Health and Social Services
Emergency Fund, and PHS Evaluation transfers. The CDC houses a number
of education and awareness activities that work to improve
surveillance, diagnosis, and treatment for several digestive diseases,
including colorectal cancer, inflammatory bowel disease (IBD), and
viral hepatitis.
The Colorectal Cancer Control Program (CRCCP) helps States and
tribes across the United States increase colorectal cancer screening
rates among men and women aged 50 years and older, and an increase in
these screenings will reduce illness and death from this cancer.
Currently, the CRCCP funds 23 States, 6 universities, and one American
Indian tribe. A proportional increase in funding will ensure that more
vulnerable communities across the U.S. will gain the resources
necessary to adhere to regular colorectal cancer screening.
The CDC has also led an epidemiological study of IBD to understand
incidence, prevalence, demographics, and healthcare utilization. The
study's goal is to learn more about the causes of IBD in order to
improve care and target interventions. A modest increase in funding
will allow CDC to improve treatments and diagnostics for patients with
IBD, including Crohn's disease and ulcerative colitis.
The Division of Viral Hepatitis (DVH), in collaboration with
domestic and global partners, provides the scientific and programmatic
foundation and leadership for the prevention and control of hepatitis
virus infections and their manifestations. Its three branches,
Epidemiology and Surveillance, Prevention, and Laboratory, work to
prevent viral hepatitis infections and associated liver disease.
Increases in funding for DVH will allow the Division to achieve the
imperatives, objectives, and strategies outlined in its 5-year
strategic plan to decrease disease incidence, morbidity and mortality,
and health disparities.
national institutes of health
DDNC joins the medical research community in thanking Congress for
continuing to support the National Institutes of Health. In fiscal year
2020, please continue to provide sustainable growth at the Institutes
by providing the NIH with at least a $2.5 billion funding increase to
bring total funding up to $41.6 billion. 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. In this regard, please also provide a proportional
increase for the National Institute of Diabetes and Digestive and
Kidney Diseases (NIDDK). NIDDK supports basic, translational, and
clinical research into various diseases such as inflammatory bowel
disease (IBD), pancreatic cancer, gastroparesis, and others. This
federally-funded research often serves as a catalyst with industry
turning medical breakthroughs and scientific advancements into
innovative therapies and cutting-edge diagnostic tools.
Thank you for your time and consideration of our requests, and we
look forward to continuing to work with you on these issues.
[This statement was submitted by Samir Shah, MD, FACG, FASGE, AGAF,
President, Digestive Disease National Coalition.]
______
Prepared Statement of Dr. Stefano Guandalini and Dr. Bana Jabri
of the University of Chicago
Chairman Blunt, Ranking Member Murray and distinguished Members of
the Subcommittee, thank you for the privilege of submitting written
testimony.
Celiac disease is a serious autoimmune disease that is not being
taken seriously enough by our government.
Celiac disease is one of the world's most common genetic autoimmune
diseases. Approximately 40 percent of us carry the genetic marker and
about 1 percent of us actually develop celiac disease. Yet, this is
nearly double the number of people with Crohn's disease and ulcerative
colitis combined, and nearly triple the number of those with Type 1
Diabetes.
And, regrettably, researchers are finding that the disease
prevalence is doubling approximately every 15 years, making it a public
health epidemic.
It is estimated that no more than 40 percent of the 3 million
Americans with celiac disease have been correctly diagnosed. The other
almost 2 million continue to suffer and have no idea why. In celiac
disease patients, gluten, a protein found in wheat, barley and rye,
triggers an immune response leading the body to attack the small
intestine.
This intestinal damage causes more than 200 debilitating symptoms.
Moreover, gluten ingestion for people with celiac disease causes
permanent immunological scarring, doubles the risk of heart disease,
and acts as a carcinogen, quadrupling the risk of small intestinal
cancers.
Strict adherence to a gluten-free diet is the only available
treatment. But, as our celiac disease researchers agree, ``There is no
such thing as a truly gluten-FREE diet'' because of the constant risk
of cross-contact with gluten, and gluten is in 80 percent of our
foodstuffs.
It is imperative that celiac disease be recognized as an important
threat to the health of our citizens by the U.S. Government, including
and especially by the NIH, the FDA, the CDC, and CMS. Celiac disease
research receives virtually no investment from the private sector, and
little to no resources from NIH, especially when compared to diseases
with similar impact.
Celiac disease is very serious:
--The lifetime burden of the gluten-free diet is perceived by
patients to be second only to end-stage renal disease, and by
caregivers, comparable to caring for a patient with cancer.
--Our diagnosed patients report that they miss, on average, 23 days
of work and school annually, resulting in excess utilization of
our healthcare resources.
Thank you for your time today and thank you for anything this
distinguished Subcommittee can do to assist us in this fight to end
this serious disease.
______
Prepared Statement of the Dystonia Medical Research Foundation
summary of recommendations for fiscal year 2019
_______________________________________________________________________
--Provide $41.6 billion for the National Institutes of Health (NIH)
and proportional increases across its Institutes and Centers
--Continue dystonia research supported by NIH through the National
Institute on Neurological Disorders and Stroke (NINDS), the
National Institute on Deafness and other Communication
Disorders (NIDCD), and the National Eye Institute (NEI).
_______________________________________________________________________
Dystonia is a neurological movement disorder characterized by
involuntary muscle spasms that cause the body to twist, repetitively
jerk, and sustain postural deformities. Focal dystonia affects specific
parts of the body, while generalized dystonia affects multiple parts of
the body at the same time. Some forms of dystonia are genetic but
dystonia can also be caused by injury or illness. Although dystonia is
a chronic and progressive disease, it does not impact cognition,
intelligence, or shorten a person's life span. Conservative estimates
indicate that between 300,000 and 500,000 individuals suffer from some
form of dystonia in North America alone. Dystonia does not
discriminate, affecting all demographic groups. There is no known cure
for dystonia and treatment options remain limited.
Although little is known regarding the causes and onset of
dystonia, two therapies have been developed that have demonstrated a
great benefit to patients and have been particularly useful for
controlling patient symptoms. Botulinum toxin (e.g., Botox, Xeomin,
Disport and Myobloc) injections and deep brain stimulation have shown
varying degrees of success alleviating dystonia symptoms. Until a cure
is discovered, the development of management therapies such as these
remains vital, and more research is needed to fully understand the
onset and progression of the disease in order to better treat patients.
dystonia research at the national institutes of health
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 along with NINDS recently
held a meeting with the goal of to define emergent opportunities in
dystonia research. The meeting brought together key individuals
actively involved in genetic, cellular, physiological, systems and
clinical research on dystonia and other relevant research areas, to
discuss existing and potential possibilities to refocus and accelerate
dystonia research as well as assess the most optimal ways to transfer
recent basic science findings to clinical practice. The meeting
provided a unique opportunity to assess the dystonia research agenda,
stimulate more integrative and cross-disciplinary approaches, and
provide recommendations for the next decade of research support and
funding. The meeting took place more than 10 years since the previous
major joint meeting also hosted by NINDS in 2006.
The primary outcomes of the meeting are: (a) a summary of the
status of dystonia research with a special emphasis on emerging trends
(a publication summarizing the meeting is in preparation), (b)
identification of research areas that need to be supported in order to
develop more solid scientific basis for better understanding dystonia
etiology and treatment; (c) identification and evaluation of the
current status of translational dystonia research; (d) identification
of traditionally 'non-dystonia' research areas that have the potential
to substantially contribute to the dystonia field; (e) identification
of dystonia patients' therapeutic needs and assessment of clinical
relevance of current and future dystonia studies.
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 belpharospasm.
We thank the committee for the increase for NIH in fiscal year
2019. We know firsthand that this will further NIH's ability to fund
meaningful research that benefits our patients.
patient perspectives
My dystonia first presented when I was about 8 years old and my
parents took me to many, many doctors. My foot and leg would turn in
when I tried to walk--making walking very difficult. The kids at school
would tease me and called me names like ``mental foot''. When I
couldn't explain it, they teased me more. Finally, at the age of 12 the
diagnosis of dystonia was made. I have the genetic form of dystonia--
DYT1 dystonia that is generalized and commonly affects children between
the ages of 8 to 15. For me, dystonia spread from my left foot to both
legs, my arms and my back. When I walked, my back would arch and put a
lot of pressure on the bottom of my spine which was pretty painful. My
legs were very tight. My right foot started to turn in and that put
pressure on my ankle when I walked. My right arm was very tight, so
when I had to write it was painful. I decided to pursue Deep Brain
Stimulation for my dystonia when it became too painful to walk with my
son to the park that was around the corner from our house. The results
have been life-changing. My wife and sons now have a husband and father
who, despite having dystonia, is physically able to be active and a
part of their lives. It isn't a cure but a treatment that really worked
for me.
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 (SD), a focal form of dystonia, is a
neurological voice disorder that involves ``spasms'' of the vocal cords
causing interruptions of speech and affecting voice quality. My voice
sounds strained or strangled with breaks where no sound is produced.
When untreated, it is difficult for others to understand me. I receive
injections of botulinum toxin into my vocal cords every 3 months for
temporary relief of symptoms. This has worked well for me for over a
decade. At the start of this year, my insurance coverage changed when
my husband's company changed providers. As a result, I had to undergo
an extensive review process and change methods for obtaining my
medicine. The review lasted for four weeks. Multiple times during this
time period, my doctor and I were told that I had been denied coverage.
After a seven week delay, I am scheduled for my injection and am
looking forward to a period of spasm-free speaking.
DMRF was founded in 1976. Since its inception, the goals of DMRF
have remained to advance research for more effective treatments of
dystonia and ultimately find a cure; to promote awareness and
education; and support the needs and wellbeing of affected individuals
and their families.
Thank you for the opportunity to present the views of the dystonia
community, we look forward to providing any additional information.
[This statement was submitted by Janet Hieshetter, Executive
Director, Dystonia Medical Research Foundation.]
______
Prepared Statement of The Education Trust
On behalf of The Education Trust, an organization dedicated to
closing long-standing gaps in opportunity and achievement separating
students from low-income backgrounds and students of color from their
peers, thank you for the opportunity to present testimony on the fiscal
year 2020 Labor, Health and Human Services, Education and Related
Agencies (L-HHS-ED) Appropriations bill.
Before discussing specific appropriations priorities, the Education
Trust would like to highlight our support for the substantial increase
of statutory budget caps for fiscal year 2020 and 2021, specifically to
prevent damaging cuts to non-defense discretionary (NDD) spending.
Within those increased caps, the Labor-HHS-ED appropriations bill
should remain a priority and receive, at minimum, an increase
proportional to the overall NDD increase.
While there are many programs under your jurisdiction that are
critical to advancing equity, for fiscal year 2020, The Education Trust
is focused on the following: strengthening the Pell Grant program by
increasing the maximum award to at least $6,345; supporting teachers
and school leaders by level funding ESSA's Title II-A ($2.055B), the
Teacher and School Leader Incentive Program ($200 million), the
Supporting Effective Educator Development Program ($75 million), HEA's
Title II's Teacher Quality Partnership grants ($43.1M); and restoring
funding to the School Leader Recruitment and Support Program ($14.5M).
We are encouraged by the funding levels provided by the House
Subcommittee on Labor, Health and Human Services, Education and Related
Agencies (L-HHS-ED) for some of these initiatives and urge continued
support for these critical programs.
strengthening the pell grant program
The Pell Grant program is the cornerstone of Federal financial aid.
Created in 1972 as the Basic Educational Opportunity Grant, the program
benefits over 7 million students annually and continues to serve as the
primary Federal effort to open the door to college for students from
low-income backgrounds. Over one-third of White students, two-thirds of
Black students, and half of Latino students rely on Pell Grants every
year.\1\ Pell Grant dollars are well-targeted to those in need: 83
percent of Pell recipients come from families with annual incomes at or
below $40,000, including 44 percent with annual family incomes at or
below $15,000.\2\
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\1\ Congressional Budget Office (CBO), January 2017 baseline
projections for the Pell Grant program, http://bit.ly/2mLy0nk, Table 2;
and Ed Trust calculation NPSAS:12 using PowerStats.
\2\ https://www2.ed.gov/finaid/prof/resources/data/pell-data.html.
---------------------------------------------------------------------------
Increasing the Maximum Award
The Pell Grant program's impact is shrinking as the maximum award
has failed to keep pace with the rapidly rising cost of college. The
purchasing power of the Pell Grant has dropped dramatically since the
program's inception. In 1980, the maximum Pell Grant award covered 76
percent of the cost of attendance at a public university. Today, it
covers just over 28 percent, the lowest portion in over 40 years. If
the maximum award continues to stagnate, the grant will cover just one-
fifth of college costs in 10 years.
We very much appreciate previous increases to the maximum award in
prior omnibus appropriations bill, and we respectfully request that you
continue to increase the maximum award amount. For fiscal year 2020,
Congress should increase the maximum award to at least $6,345 to keep
pace with inflation. We also ask Congress to use HEA reauthorization to
enact an ambitious plan to reverse the downward trend of Pell's
purchasing power through proscribed funding increases and expansion of
the mandatory funding stream, ensuring that the maximum Pell award
covers at least half of the cost of attendance at a public 4-year
institution.
supporting teachers and school leaders
Research and experience show the powerful impact that teachers and
school leaders have on student learning. ESSA's Title II program
provides grants to States and districts that can be used to invest in
the education profession. These funds can be used to, among other
things, address inequities in access to effective teachers and school
leaders, provide professional development, and improve teacher
recruitment and retention. States and districts can also apply for
additional competitive grant dollars for programs targeted at specific,
evidence-based strategies for improving teacher and school leader
effectiveness and increasing educator diversity. Additionally, HEA's
Title II's Teacher Quality Partnership grants (TQP), awarded to
partnerships of high-need districts and teacher preparation programs at
institutions of higher education, can be used to recruit
underrepresented populations to the teaching profession. As Ed Trust's
work continues to demonstrate the positive impact that diverse teachers
and school leaders of color can have on the academic achievement of
both students of color and White students, we remain supportive of
Federal dollars to increase and bolster the diversity of the educator
pipeline.
Maintain funding for ESSA Title II-A (Supporting Effective
Instruction), the Teacher and School Leader Incentive Program
(TSLIP), the Supporting Effective Educator Development (SEED)
program, and HEA Title II Teacher Quality Partnership (TQP)
grants
Despite the nationwide attention to the need to invest in
educators, the President's fiscal year 2020 budget request again called
for the elimination of the Title II-A grant, the SEED program, and HEA
Title II Teacher Quality Partnership grants. We appreciate Congress'
rejection of these requests in the fiscal year 2019 omnibus
appropriations bill. At a minimum, in fiscal year 2020, Congress should
continue funding Title II-A, TSLIP, SEED, and TQP at fiscal year 2019
levels: $2.055B, $200 million, $75 million, and $43.1M, respectively.
Restore Funding for the School Leader Recruitment and Support Program
Landmark research funded by the Wallace Foundation has found
``virtually no documented instances of troubled schools being turned
around without intervention by a powerful leader,'' and the School
Leader Recruitment and Support Program is the only Federal program
specifically focused on investing in evidence-based, locally driven
strategies to strengthen school leadership in high-need schools. A
recently concluded 7-year study of school districts that created
pipelines to develop school leaders saw increasing gains in student
achievement over time, showing how a sustained initiative can
demonstrate positive effects on student learning.
During the past decade, we have learned a lot about what works in
education leadership-lessons made possible, in part, by Federal
investments in the School Leader Program (the previous iteration of the
SLRSP). There is still a great deal of work to do, especially when it
comes to identifying and efficiently preparing effective turnaround
leaders, as well as sustainably supporting them to accelerate academic
achievement, close gaps, and maintain improvement over time for all
students and in every community. The SLRSP is a key lever for seeding
the next generation of effective school leader development programs,
promoting equity, advancing ongoing innovation, and sharing cutting-
edge lessons on transformational leadership with the broader field.
For fiscal year 2020, Congress should restore funding for the
School Leader Recruitment and Support Program to $14.5M, its fiscal
year 2017 appropriation level.
Thank you for the opportunity to submit testimony, and The
Education Trust is happy to respond to any questions or concerns.
[This statement was submitted by John B. King Jr., President and
CEO, The
Education Trust.]
______
Prepared Statement of the Elder Justice Coalition
Chairman Blunt, Ranking Member Murray:
On behalf of the bipartisan 3000-member Elder Justice Coalition, I
thank you for your past support of programs designed to end the ravages
of elder abuse, neglect, and exploitation in America. Thank you also
for the honor of presenting the EJC viewpoints to the Subcommittee last
year. I submit this fiscal year 2020 testimony in support of funding in
the Department of Health and Human Services for several programs that
play unique roles in addressing elder abuse.
The EJC request includes $25 million under the Administration for
Community Living (ACL) Elder Justice Initiative and $25 million in
dedicated funding for Adult Protective Services authorized under the
Elder Justice Act; $20 million in additional targeted funding for the
State Long-Term Care Ombudsman Program in Title VII of the Older
Americans Act to address assisted living quality of care; $17 million
for Title VII core long-term care ombudsman services; and $5 million
for Title VII Programs for Prevention of Elder Abuse, Neglect, and
Exploitation. Also, we request $5 million for supporting effective
community-based education and awareness programs and training for the
ombudsman program as authorized under the Elder Justice Act, and no
less than $1.7 billion under the HHS Administration for Children and
Families (ACF) Social Services Block Grant. I also testify in support
of at least $5 million for the OAA aging network to address the growing
demand for a coordinated response to abuse linked to the opioid
addiction of family and caregivers of older adults, and for $250,000 in
new funding for an Advisory Board on Elder Abuse, Neglect, and
Exploitation, called for in the Elder Justice Act, but never funded.
Further, I testify in support of increasing oversight on the Centers
for Medicare and Medicaid Services (CMS).
Thank you again for your leadership with difficult budget issues in
recent years. Broadly speaking, we ask that you again come to
bipartisan agreement on budget caps for fiscal years 2020 and 2021. The
EJC views this as a necessity and as an opportunity to secure important
new funding increases for elder justice programs which will prevent and
address elder abuse, neglect, and exploitation that is growing in each
of our communities.
The national menace of elder abuse continues. The Justice
Department estimates one in ten older adults will experience abuse
annually. In fact, close to 50 percent of people with dementia will be
abused. Financial abuse alone costs its older victims $2.9 billion a
year. The direct medical costs of injuries and care related to elder
abuse exceed $5 billion a year. And, as the Senate Special Committee on
Aging has found, for every reported case of abuse, there are five times
as many that go unreported.
As you know, no State is immune from the horrible storied of abuse
reported in our neighborhoods and in long-term care facilities,
including everything from physical and sexual abuse of older adults in
their own homes or living in assisted living and nursing homes to
neglect leading to starvation and bed sores to stealing assets from
older persons and leaving them in poverty and or homeless. Sadly, we
can read about these crimes every day in newspapers and on line from
across the county.
Unfortunately, our Federal response fails to meet even a common-
sense approach to a problem that is costing the Nation so much in
diminished quality of life, additional healthcare expenditures,
caregiver crises, and law enforcement actions. The specific fiscal year
2020 asks of our bipartisan Coalition to address this worsening
situation are:
--$25 million in funding for the Elder Justice Initiative in ACL. As
the Federal home for Adult Protective Services (APS), ACL needs
these funds to continue to advance the first national APS
system with centralized and improved data collection, including
data on abuse linked to opioid and similar drug addiction. The
Initiative also supports innovation grants for elder abuse
prevention, funds for elder abuse forensics needed in the
prosecution of perpetrators, and abuse education and prevention
in Indian Country. Also, $25 million is requested in dedicated
funding for Adult Protective Services authorized under the
Elder Justice Act.
--$25 million in additional funding for Title VII of the Older
Americans Act, of which $20 million would be for the Long-Term
Care Ombudsman Program to improve their capacity in two new
areas of critical concern: to prevent and address abuse in
assisted living, a problem identified in a February 2018 GAO
report as a growing concern, and to respond to the opioid
crisis in nursing homes. The remaining $5 million could be
directed at supporting effective community-based education and
awareness programs and training.
--$17 million in current core funding for the State Long-Term Care
Ombudsman Program focused on nursing home quality of care and
residents' rights.
--At least $1.7 billion in funding for the Social Services Block
Grant, but preferably an increase. This block grant has not
seen new funding since 1999, and it is being stretched thin
across several dozen worthy programs that all need additional
resources. This block grant is the only Federal funding
provided for Adult Protective Services (APS), and it also funds
other community-based programs that serve elder abuse victims,
such as home-delivered meals.
--$250,000 to convene the Advisory Board on Elder Abuse, Neglect, and
Exploitation, called for in the Elder Justice Act, to
complement the work of the Elder Justice Coordinating Council,
so ably supported by ACL Administrator Lance Robertson of
Oklahoma.
--This year we also ask that you provide to ACL at least $5 million
from the billions that Congress has appropriated to address
opioid addiction. We strongly advocate that ACL be one of the
HHS operating divisions to receive funds. These funds would be
used to support the aging network's need for coordination,
collaboration, data collection, referrals, and particularly
training to address elder abuse tied to opioid addiction that
has been recently documented. These funds would be directed
toward vulnerable older victims of opioid-based elder abuse who
have been overlooked to date. Specific resources are needed in
our communities for the aging network, APS, the ombudsmen, law
enforcement, and others to develop plans
--Finally, we ask for vigorous oversight of CMS to ensure no further
rollbacks in regulations aimed at protecting nursing home
residents and that they respond in a timely manner to reports
of abuse in long-term care facilities, lengthy timeframe
failures that were identified last year in a recent HHS
Inspector General report.
Elder justice should be more than an aspiration. It helps define
quality of life for an older adult, which can never be achieved while
there is elder abuse. Its prevention must be our national mission.
Thank you for considering our request.
[This statement was submitted by John B. Breaux, Honorary Chair and
Robert B. Blancato, National Coordinator, Elder Justice Coalition.]
______
Prepared Statement of The Endocrine Society
The Endocrine Society thanks the Subcommittee for the opportunity
to submit the following testimony regarding fiscal year 2020 Federal
appropriations for biomedical research and public health programs. The
Endocrine Society is the world's oldest and largest professional
organization of endocrinologists representing more than 18,000 members
worldwide. The Society's membership includes basic and clinical
scientists who receive support from the National Institutes of Health
(NIH) to fund research on endocrine diseases that affect millions of
Americans, such as diabetes, thyroid disorders, cancer, infertility,
aging, obesity and bone disease. Our membership also includes
clinicians who depend on new scientific advances to better treat and
cure these diseases. Our organization is dedicated to promoting
excellence in research, education, and clinical practice in the field
of endocrinology. To support necessary advances in biomedical research
to improve health, the Endocrine Society asks that the NIH receive
total funding of least $41.6 billion for fiscal year 2020. To
facilitate the translation of these advances to improve public health,
the Endocrine Society asks that the Centers for Disease Control (CDC)
receive funding of at least $7.8 billion; and to ensure that women have
access to appropriate health services, we recommend that the Title X
program be funded at $400 million.
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. Consequently, endocrine research contributes an important
understanding of how the various systems of the human body communicate
and interact to maintain health. The multiple body functions governed
by the endocrine system are broad and essential to overall wellbeing:
endocrine functions include reproduction, the body's response to stress
and injury, sexual development, energy balance and metabolism, and bone
and muscle strength. Endocrinologists also study interrelated systems,
for example how hormones produced by fat can influence the development
of bone disease and susceptibility to infections.
endocrine research is supported by numerous nih institutes
Many endocrine diseases and disorders are addressed by the missions
of multiple NIH Institutes and Centers (ICs); research on all
biological systems and disease States is necessary to advance effective
therapies for these diseases. For example:
--Endocrine researchers funded by the National Institute of Aging
help us understand how hormonal treatment for menopause might
improve stress responses in women; \1\
---------------------------------------------------------------------------
\1\ https://www.endocrine.org/news-room/press-release-archives/
2017/treating-menopausal-symptoms-can-protect-against-stress-negative-
effects Accessed March 11, 2018.
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--Researchers funded by the Eunice Kennedy Shriver National Institute
of Child Health and Human Development (NICHD) are discovering
how hormones influence the gut microbiome, which in turn can
influence the development of polycystic ovarian syndrome
(PCOS).\2\
---------------------------------------------------------------------------
\2\ Torres, PJ, et al., ``Gut Microbial Diversity in Women with
Polycystic Ovary Syndrome Correlates with Hyperandrogenism'' The
Journal of Clinical Endocrinology & Metabolism, jc.2017-02153.
---------------------------------------------------------------------------
--Endocrine oncologists supported by the National Cancer Institute
developed a new drug with a unique mechanism that could inhibit
the growth of drug-resistant prostate cancer.\3\
---------------------------------------------------------------------------
\3\ https://www.endocrine.org/news-room/press-release-archives/
2013/new-medication-treats-drug-resistant-prostate-cancer-in-the-
laboratory. Accessed March 11, 2018.
---------------------------------------------------------------------------
--Diabetologists funded by the National Institute of Diabetes and
Digestive and Kidney Diseases (NIDDK) are exploring new genes
and biological pathways that could prevent or reverse the
development of diabetes.\4\
---------------------------------------------------------------------------
\4\ Cinti, F, et al., Evidence of b-Cell Dedifferentiation in Human
Type 2 Diabetes. The Journal of Clinical Endocrinology & Metabolism,
Volume 101, Issue 3, 1 March 2016, Pages 1044-1054.
---------------------------------------------------------------------------
--National Institute of Environmental Health Science (NIEHS)-funded
researchers are investigating how per- and polyfluoroalkyl
substances can disrupt endocrine systems resulting in
reproductive and cognitive health effects.\5\
---------------------------------------------------------------------------
\5\ Vuong, A., et al., ``Prenatal and childhood exposure to poly-
and perfluoroalkyl substances (PFAS) and cognitive development in
children at age 8 years.'' Environmental research. 2019 Feb 16; 172
:242-248.
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An effective biomedical research enterprise therefore requires a
strong base appropriation for the NIH and sustained support for all
ICs.
nih requires steady, sustainable funding increases
The Endocrine Society appreciates the increases to the NIH budget
in recent fiscal years; however, the biomedical research community
requires steady, sustainable increases in funding to ensure that the
promise of scientific discovery can efficiently be translated into new
cures. NIH grant success rates are predicted to remain at historically
low averages, meaning that highly skilled scientists will continue to
spend more time writing highly meritorious grants that will not be
funded. Young scientists will also continue to be driven out of
biomedical research careers due to the lack of funding. We know that
when laboratories lose financing; they lose people, ideas, innovations
and new patient treatments.\6\
---------------------------------------------------------------------------
\6\ Teresa K. Woodruff ``Budget Woes and Research.'' The New York
Times. September 10, 2013.
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adequate funding of cdc programs is necessary to protect the public's
health
The CDC plays a critical role in advancing public health by
applying new knowledge to the promotion of health and prevention of
epidemic diseases such as diabetes. The Division of Diabetes
Translation administers the National Diabetes Prevention Program
(National DPP), which addresses the increasing burden of prediabetes
and Type 2 Diabetes in the United States. The National DPP creates
public and private partnerships to provide evidence-based, cost-
effective interventions that prevent diabetes in community-based
settings. Through structured lifestyle change programs at local YMCAs
or other community centers, individuals with prediabetes can reduce the
risk of developing diabetes by 58 percent in those under 60 and by 71
percent in those 60 and older.\7\ In addition to supporting public
health and prevention activities, CDC's Clinical Standardization
Programs in the Center for Environmental Health are critical to
improving accurate and reliable testing of hormones, appropriate
diagnosis and treatment of disease, and reproduceable public health
research. Adequate funding is critically important to ensure that CDC
has the capacity to address existing and emerging threats to public
health in the United States and around the world.
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\7\ The Diabetes Prevention Program (DPP) Research Group ``The
Diabetes Prevention Program (DPP): description of lifestyle
intervention.'' Diabetes Care. 2002 Dec;25(12):2165-71.
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title x funding provides necessary services and reduces healthcare
costs
Title X is an important source of funding for ensuring reproductive
health benefits including both contraceptive and preventive services to
women. In 2015, a study found that Title X-funded health centers
prevented 822,000 unintended pregnancies, resulting in savings of $7
billion to Federal and State Governments. Offering affordable access to
contraception can have a measurable impact on these costs. For every
public dollar invested in contraception, short-term Medicaid
expenditures are reduced by $7.09 for the pregnancy, delivery, and
early childhood care related to births from unintended pregnancies,
resulting in savings of $7 billion to Federal and State Governments.\8\
---------------------------------------------------------------------------
\8\ Frost JJ, et al., Publicly Funded Contraceptive Services at
U.S. Clinics, 2015, New York: Guttmacher Institute, 2017.
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Title X is the main point of care for low income, under- or un-
insured, adults and adolescents for affordable contraception, cancer
screenings, sexually transmitted disease testing and treatment, and
medically-accurate information on family planning options. However, to
provide these services to the over 4 million people who depend on Title
X-funded centers, Title X is significantly underfunded.
fiscal year 2020 funding requests
In conclusion, to avoid loss of promising research opportunities,
allow budgets to keep pace with inflation, support 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 fiscal year 2020 Labor, Health and Human Services, Education, and
Related Agencies appropriations bill:
--$41.6 billion for the National Institutes of Health
--$7.8 billion for the Centers for Disease Control and Prevention
--$400 million for Title X
______
Prepared Statement of Entomological Society of America
The Entomological Society of America (ESA) respectfully submits
this statement for the official record in support of funding for
insect-borne disease research at the U.S. Department of Health and
Human Services (HHS). ESA requests $41.6 billion in fiscal year 2020
for the National Institutes of Health (NIH), including increased
support for insect-borne disease research at the National Institute of
Allergy and Infectious Diseases (NIAID). The Society also supports
increased investment in the core infectious diseases budget and the
global health budget within the Centers for Disease Control and
Prevention (CDC) to fund scientific activities related to vector-borne
diseases for a total of $7.8 billion in fiscal year 2020. ESA also
requests Congress provide full funding for the Institute of Museum and
Library Services (IMLS), including $38.6 million in fiscal year 2020
for the Office of Museum Services.
NIH, the Nation's premier medical research agency, advances human
health by supporting research on basic human and pathogen biology and
by developing prevention and treatment strategies. Cutting-edge
research in the biological sciences, including the field of entomology,
is essential for addressing societal needs related to environmental and
human health. Many species of insects and arachnids (including ticks
and mites) serve as carriers, or vectors, of an array of infectious
diseases that threaten the health and well-being of people across the
globe. This threat impacts citizens in every State and territory of the
U.S. and military personnel serving at home and abroad. The mosquitoes
that vector diseases are considered responsible for the deaths of more
people than all other animal species combined, including humans.\1\
Vector-borne diseases can be particularly challenging to control;
controlling the insect and arachnid vectors is complicated by their
mobility and their propensity for developing pesticide resistance.
Further, effective vaccines are not available for many of these
diseases.
---------------------------------------------------------------------------
\1\ https://www.gatesnotes.com/Health/Most-Lethal-Animal-Mosquito-
Week.
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Within NIH, NIAID conducts and supports fundamental and applied
research related to the understanding, prevention, and treatment of
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 aimed at
understanding the relationships between insect vectors and the diseases
they transmit is essential for reliable monitoring and prediction of
outbreaks, effective prevention of disease transmission, and rapid
diagnosis and treatment of diseases. For example, NIAID researchers at
the NIH recently discovered that flaviviruses reproduce in tick
salivary glands.\2\ The most notorious of flaviviruses include the
viruses that cause dengue fever, Zika, West Nile, yellow fever, and
Powassan. The Powassan virus is the only disease-inducing flavivirus
that is endemic to North America and is a re-emerging virus that is
very rapidly transmitted by ticks. By identifying that these viruses
reproduce in the salivary glands in ticks, scientists have identified a
possible explanation for the high speed in which transmission of this
virus between the vector and the host takes place. This breakthrough
will aid in the identification of transmission pathways which can then
be used to eliminate this tick-borne flavivirus disease as more
information becomes available. Given the enormous impact of insect
carriers of disease on human health, ESA urges the subcommittee to
support vector-borne disease research programs that incorporate the
entomological sciences as part of a comprehensive approach to
addressing infectious diseases.
---------------------------------------------------------------------------
\2\ https://www.niaid.nih.gov/news-events/nih-scientists-explore-
tick-salivary-glands-tool-study-virus-transmission-and-infection.
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CDC, serving as the Nation's leading health protection agency,
conducts scientific research and provides health information to prevent
and respond to infectious diseases and other global health threats,
irrespective of whether they arise naturally or via acts of
bioterrorism. Within the core infectious diseases budget of CDC, the
Division of Vector-Borne Diseases (DVBD) aims to protect the Nation
from the threat of viruses and bacteria transmitted primarily by
mosquitoes, ticks, and fleas. DVBD's mission is carried out by a staff
of experts in several scientific disciplines, including entomology.
CDC plays a key role in tracking new and emerging diseases. Dengue
fever, limited 50 years ago to a small region in Southeast Asia, has
now spread across several continents and results in about 500,000
deaths per year.\3\ Chikungunya fever, once constrained to eastern
African, has now spread across the globe with Chikungunya infection
rates surpassing that of dengue in the Caribbean.\4\ Both diseases are
spread by mosquito vectors that occur widely in the southern U.S. The
first cases of Chikungunya locally acquired in Florida were reported in
the last decade, and both viruses threaten to spread further into the
U.S., especially in the face of changing climate conditions. Funding
for research on what effects population dynamics of the primary vector,
the yellow fever mosquito (Aedes aegypti), is critical to developing
strategies for stemming the spread of these diseases and preventing a
major public health crisis.
---------------------------------------------------------------------------
\3\ https://med.stanford.edu/news/all-news/2019/01/set-of-genes-
predicts-severity-of-dengue.html.
\4\ https://www.ncbi.nlm.nih.gov/pubmed/26518229.
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CDC has also awarded nearly $50 million to five universities to
establish regional centers of excellence (COE) that can help
effectively address emerging and exotic vector-borne diseases. The five
centers, for which current funding expires in 2021, help generate the
necessary research, knowledge, and capacity to enable appropriate and
timely local public health action for vector-borne diseases throughout
the U.S. This is critical given significant regional differences in
vector ecology, disease transmission dynamics and resources. One recent
breakthrough, supported by the Southeastern COE in Vector Borne
Diseases, used CRISPR gene-editing technologies to figure out what
genes contribute to how mosquitoes are attracted to humans.\5\ The goal
is to use this knowledge to find new ways to use something more like a
perfume and less like bug spray to help make humans ``invisible'' to
mosquitoes. Given that the contributions of the CDC are vital for the
health security of the Nation, ESA requests that the committee provide
robust support for CDC programs addressing vector-borne diseases and to
continue to support the Centers of Excellence beyond 2021.
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\5\ https://www.cell.com/action/showPdf?pii=S0960-
9822%2819%2930215-5.
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The services and funding provided by IMLS are critical in several
areas--research infrastructure, workforce development and economic
impact. The IMLS provides for the expansion of collections capabilities
at American museums, which are key for the identification,
documentation of locations, and classification of entomological
species. Funding provides for the training and education of students
and museum professionals. The 21st Century Museum Professionals Program
provides opportunities for diverse and underrepresented populations to
become museum professionals, expanding participation in an industry
with an annual economic contribution of approximately $21 billion.
Museums are critical to the public understanding of emerging major
scientific issues through exhibits and programs, and in so doing,
support science education as an integral part of the Nation's
educational infrastructure. Finally, they make significant long-term
contributions to economic development in their local communities, which
is why the Society requests no less than $38.6 million for the Office
of Museum Services within IMLS in fiscal year 2020.
ESA thanks the committee for the opportunity to provide input on
these important priorities. ESA, headquartered in Annapolis, Maryland,
is the largest organization in the world serving the professional and
scientific needs of entomologists and individuals in related
disciplines. As the largest and one of the oldest insect science
organizations in the world, ESA has over 7,000 members affiliated with
educational institutions, health agencies, private industry, and
government. Members are researchers, teachers, extension service
personnel, administrators, marketing representatives, research
technicians, consultants, students, pest management professionals, and
hobbyists. For more information about the Entomological Society of
America, please see http://www.entsoc.org/.
[This statement was submitted by Robert K.D. Peterson, PhD,
President,
Entomological Society of America.]
______
Prepared Statement of the Epilepsy Foundation
Dear Chairman Blunt and Ranking Member Murray:
The Epilepsy Foundation appreciates the opportunity to submit
written testimony as the Subcommittee begins its work on the fiscal
year 2020 Labor, Health and Human Services (HHS), Education and Related
Agencies appropriations bill. The Epilepsy Foundation respectfully
requests that the following funding levels be included in the final
fiscal year 2020 Labor, HHS, Education and Related Agencies bill: $11.5
million for the Centers for Disease Control and Prevention (CDC)'s
National Center for Chronic Disease Prevention and Health Promotion's
Epilepsy program; $41.6 billion for the National Institutes of Health
(NIH); $8.56 billion for the Health Resources & Services
Administration's (HRSA) discretionary budget authority; and $46 million
for the Agency for Healthcare Research and Quality (AHRQ). Our written
testimony focuses on the incredible value and impact of CDC's Epilepsy
program.
The Epilepsy Foundation is the leading national voluntary health
organization that speaks on behalf of the approximately 3.4 million
living with epilepsy and seizures. We foster the wellbeing of children
and adults affected by seizures through research programs, educational
activities, advocacy, and direct services. Epilepsy is a medical
condition characterized by seizures, which are sudden surges of
electrical activity in the brain, that affects a variety of mental and
physical functions.
The Institute of Medicine's (IOM) report on epilepsy, Epilepsy
Across the Spectrum: Promoting Health and Understanding, identifies the
Epilepsy Foundation and the CDC leaders in addressing many of its
national recommendations. The Epilepsy Foundation, supported by a
cooperative agreement with CDC, has made the following progress:
--Provided education and/or direct training on epilepsy to more than
81,487 law enforcement and first responders, 57,511 school
nurses and 407,649 students and teachers;
--Delivered evidence-based self-management training to people with
epilepsy so that they can take control of their health, better
cope with day-to-day challenges and reduce healthcare
utilization and healthcare costs;
--Reached underserved populations through:
--Project ECHO, a tele-mentoring process between an epilepsy
specialist and primary care providers, in Ohio, Indiana,
West Virginia and Kentucky;
--An advanced practice provider model with family nurse
practitioners and physician assistants;
--Delivery of signature programs through local Epilepsy Foundation
offices;
--Training community health workers in Texas and Illinois; and
--Outreach to behavioral health professionals in rural settings.
The Department of Health and Human Services initiative, Healthy
People 2020, includes the goal to ``increase the proportion of people
with epilepsy and uncontrolled seizures who receive appropriate medical
care.'' Continued and increased funding for the CDC epilepsy program is
critical to meeting this goal--as it is the only public health program
specifically related to epilepsy that offers a national scope and local
community programs. Approximately 1 in 26 Americans will develop
epilepsy at some point in their lifetime. There is no ``one size fits
all'' treatment option for epilepsy, and despite available treatments,
about a third of people living with epilepsy--approximately 1 million--
suffer from uncontrolled or intractable seizures,\1\ with many more
living with significant side-effects. Among adults with epilepsy, only
50 percent have seen both a primary care physician and a neurologist
and epilepsy specialist in the last year; 36 percent have seen a
primary care physician only; 8 percent have seen a neurologist or
epilepsy specialist only; and 6 percent have seen neither.\2\ Thirty-
nine percent of those experiencing seizures in the last year have not
seen a neurologist.\3\ Compared to adults with no history of epilepsy,
adults with active epilepsy are more likely to report not being able to
afford their prescription drugs (21 percent v. 9 percent) and mental
healthcare (8 percent v. 2 percent) when these were needed in the
previous year.\4\ Nine percent of those with active epilepsy report not
being able to obtain needed healthcare because of a lack of
transportation.\5\
---------------------------------------------------------------------------
\1\ Patrick Kwan & Martin J. Brodie, Early identification of
refractory epilepsy, 342 N ENGL J MED 314-9 (2000). Retrieved from
https://www.nejm.org/doi/pdf/10.1056/NEJM200002033420503.
\2\ David J. Thurman et al., Health-care access among adults with
epilepsy: The U.S. National Health Interview Survey, 2010 and 2013, 55
EPILEPSY BEHAV 184-88 (2015). Retrieved from https://
www.ncbi.nlm.nih.gov/pmc/articles/PMC5317396/.
\3\ Ibid.
\4\ Ibid.
\5\ Ibid.
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In fiscal year 2019, $8.5 million was appropriated for the CDC's
National Center for Chronic Disease Prevention and Health Promotion's
Epilepsy program. The $3 million additional requested funds will help
support epidemiologic studies, national dissemination of evidence-based
programs to address the access of care barriers described above and
expand provider education and public awareness campaigns to reduce
stigma. Epilepsy accounts for $19.4 billion in direct costs (medical)
and indirect costs (lost or reduced earnings and productivity) each
year. To decrease this public health burden and help more people with
epilepsy have a high quality of life and access the quality, physician-
directed and person-centered healthcare they need, we simply must do
more. The House Appropriations Committee has approved $11.5 million for
the Epilepsy program in fiscal year 2020 and we urge the Senate to
support $11.5 million in the final fiscal year 2020 LHHS appropriations
bill.
If you have any questions, please contact the Epilepsy Foundation's
Vice President of Government Relations and Advocacy Laura Weidner at
[email protected].
Sincerely.
[This statement was submitted by Philip M. Gattone, M.Ed.,
President & CEO and Laura Weidner, Esq., Vice President, Government
Relations & Advocacy,
Epilepsy Foundation.]
______
Prepared Statement of the Family Planning Coalition
Chairman Blunt, Ranking Member Murray, and Subcommittee Members:
The undersigned organizations collectively represent millions of
providers, patients, administrators, researchers, public health
professionals, and advocates who support robust Federal funding of the
Title X family planning program, which helps ensure that millions of
individuals can obtain high-quality sexual and reproductive health
services. We are deeply concerned by the administration's continued
attacks on the integrity of the Title X program, as demonstrated by the
devastating rule that the Department of Health and Human Services
published March 4.\1\ We urge the Senate to provide strong support for
Title X's high-quality, evidence-based, and patient-centered care by
adopting the House's appropriation of $400 million and language
protecting the program's integrity in the fiscal year 2020 Labor,
Health and Human Services, Education, and Related Agencies
appropriations bill.
---------------------------------------------------------------------------
\1\ Department of Health and Human Services. Final Rule.
``Compliance with Statutory Program Integrity Requirements.'' Federal
Register 84 (March 4, 2019): 7714-7791.
---------------------------------------------------------------------------
Title X helps more than 4 million people access family planning and
related health services at nearly 4,000 health centers around the
country annually.\2\ More than 1.7 million of the people served are
women of color.\3\ For many individuals, particularly those who have
low incomes, are under- or uninsured, or are adolescents, Title X-
supported sites are their main access point to obtain affordable and
confidential contraception, cancer screenings, sexually transmitted
disease testing and treatment, complete and medically accurate
information about their family planning options, and other basic care.
In fact, a 2017 study found six in ten women seeking contraceptive
services at a Title X health center saw no other healthcare providers
that year.\4\
---------------------------------------------------------------------------
\2\ Christina Fowler et al, ``Family Planning Annual Report: 2017
National Summary,'' RTI International (August 2018). https://
www.hhs.gov/opa/sites/default/files/title-x-fpar-2017-national-
summary.pdf.
\3\ Ibid. Calculations include the 642,470 white women who are
Hispanic or Latina, 32,139 American Indian or Alaska Native women,
130,398 Asian women, 743,731 Black or African women, 28,652 Native
Hawaiian or Pacific Islander women, and 127,378 multi-racial women.
\4\ Mia Zolna, Megan Kavanaugh, and Kinsey Hasstedt. ``Insurance-
Related Practices at Title X-Funded Family Planning Centers under the
Affordable Care Act: Survey and Interview Findings.'' Guttmacher
Institute (November 2017). https://www.guttmacher.org/article/2017/11/
insurance-related-practices-title-x-funded-family-planning-centers-
under-affordable.
---------------------------------------------------------------------------
The data shows that Title X makes a difference for patients. In
2015 alone, Title X-supported contraceptive services helped patients
prevent an estimated 822,000 pregnancies.\5\ In addition to clinical
care, Title X supports important health center efforts that are not
reimbursable under insurance, including staff training and community-
based sexual and reproductive health education programs. Moreover,
research has shown that Title X-supported services save the Federal and
State governments approximately $7 billion a year,\6\ and 76 percent of
American adults, including 92 percent of Democrats, 52 percent of
Republicans, and 80 percent of independents said in 2019 poll that it
is important for the Federal Government to fund reproductive health
services for women with lower incomes.\7\
---------------------------------------------------------------------------
\5\ Jennifer Frost et al, ``Publicly Funded Contraceptive Services
at U.S. Clinics, 2015,'' Guttmacher Institute (April 2017). https://
www.guttmacher.org/report/publicly-funded-contraceptive-services-us-
clinics-2015.
\6\ Adam Sonfield, ``Beyond Preventing Unplanned Pregnancy: The
Broader Benefits of Publicly Funded Family Planning Services,''
Guttmacher Policy Review (December 2014). https://www.guttmacher.org/
gpr/2014/12/beyond-preventing-unplanned-pregnancy-broader-benefits-
publicly-funded-family-planning.
\7\ Ashley Kirzinger et al. KFF Poll: Public Opinion and Knowledge
on Reproductive Health Policy. Kaiser Family Foundation (May 3, 2019).
https://www.kff.org/womens-health-policy/poll-finding/kff-poll-public-
opinion-and-knowledge-on-reproductive-health-policy/.
---------------------------------------------------------------------------
In spite of the critical importance of equitable access to family
planning services for all people, regardless of their income or
insurance status, Title X remains woefully underfunded. In 2016,
researchers from the Centers for Disease Control and Prevention, the
Office of Population Affairs, and George Washington University
estimated that Title X would need $737 million annually to deliver
family planning care to all uninsured women with low incomes in the
United States.\8\ This estimate understates the true need for Title X,
as it does not include an estimate of costs for men (who made up 12
percent of patients in the network in 2017),\9\ gender non-binary
persons, and the insured patients who rely on Title X's confidentiality
protections.
---------------------------------------------------------------------------
\8\ Euna August, et al, ``Projecting the Unmet Need and Costs for
Contraception Services After the Affordable Care Act,'' American
Journal of Public Health (February 2016): 334-341.
\9\ Christina Fowler et al, ``Family Planning Annual Report: 2017
National Summary,'' RTI International (August 2018). https://
www.hhs.gov/opa/sites/default/files/title-x-fpar-2017-national-
summary.pdf.
---------------------------------------------------------------------------
The gap between the funds appropriated and the funds needed has
only grown in recent years. From 2010 to 2014 the number of women
estimated to be in need of publicly funded family planning services
increased by one million,\10\ but Congress cut Title X's funding by $31
million over that period. That decrease unfortunately corresponded to
dramatic decreases in the number of patients served at Title X-funded
sites; the numbers dropped from 5.22 million in 2010 \11\ to just over
4 million in 2017.\12\
---------------------------------------------------------------------------
\10\ Jennifer Frost, Lori Frohwirth and Mia Zolna, ``Contraceptive
Needs and Services, 2014 Update,'' Guttmacher Institute (September
2016). https://www.guttmacher.org/report/contraceptive-needs-and-
services-2014-update.
\11\ Christina Fowler et al, ``Family Planning Annual Report: 2017
National Summary,'' RTI International (August 2018). https://
www.hhs.gov/opa/sites/default/files/title-x-fpar-2017-national-
summary.pdf.
\12\ Fowler et al, ``Family Planning Annual Report: 2016 National
Summary.''
---------------------------------------------------------------------------
This funding request comes in the wake of a final rule from the
Trump-Pence administration that is unlawful, coercive, and dangerous
for patients' health, including persons with low incomes, young people,
people of color, LGBTQ people, and people experiencing intimate partner
violence. On March 4, the administration published a final rule \13\
that disregards medical ethics and evidence-based Federal guidelines in
order to severely restrict the providers in the Title X network and the
care that patients can receive from those remaining in the program.
Federal judges in Washington, Oregon, and California swiftly issued
preliminary injunctions against the rule in April 2019.\14\ The
undersigned organizations are firmly opposed to the illegal rule and
urge Congress to protect the integrity of the program so that
individuals can continue receive evidence-based care and Congress can
powerfully demonstrate its support for the Title X program in its
current form.
---------------------------------------------------------------------------
\13\ Department of Health and Human Services. Final Rule.
``Compliance with Statutory Program Integrity Requirements.'' Federal
Register 84 (March 4, 2019): 7714-7791
\14\ See State of Washington v. Alex M. Azar II., No. 1:19-cv-
03040-SAB (E.D. Wash. Apr. 25, 2019), American Medical Ass'n et al. v.
Alex M. Azar II, et al., No. 6:19-cv-00317-MC (D. Or. Apr. 29, 2019),
Essential Access Health, Inc. et al. v. Alex M. Azar, et al., No. 19-
cv-01195-EMC (N.D. Cal. Apr. 26, 2019).
---------------------------------------------------------------------------
In April, the House Appropriations Committee recognized these
challenges and acted to strengthen the Title X program by including an
appropriation of $400 million and language to block the harmful Title X
rule finalized in March and restore the full regulatory framework for
Title X to its 2016 status. We urge you to adopt these critical
provisions in your bill and maintain existing requirements that support
the program's ability to fulfill Congress' vision for this essential
public health program.
* * *
During the fiscal year 2020 appropriations process, Congress has
the opportunity to stand against relentless attacks on family planning
and support strong public funding for the Title X family planning
network. The undersigned organizations urge you to begin the expansion
of family planning and related healthcare services with this meaningful
investment in, and protection for, Title X.
If you have any questions or would like additional information,
please contact Lauren Weiss at the National Family Planning &
Reproductive Health Association at [email protected].
Thank you for considering these requests.
COG
Advocates for Youth
AIDS Action Baltimore
AIDS Alabama
AIDS Foundation of Chicago
Alliance for Justice
American Academy of Pediatrics
American Atheists
American Civil Liberties Union
American College of Nurse-Midwives
American Medical Student Association
American Psychological Association
American Public Health Association
American Sexual Health Association
American Society for Reproductive Medicine
Asian & Pacific Islander American Health Forum
Association of Maternal & Child Health Programs
Association of Women's Health, Obstetric and Neonatal Nurses
Black Women's Health Imperative
Cascade AIDS Project
Catholics for Choice
Center for Reproductive Rights
Endocrine Society
Equality California
Equality North Carolina
Equity Forward
Girls Inc.
Global Justice Center
Guttmacher Institute
Healthy Teen Network
HIV Medicine Association
Howard Brown Health
Human Rights Campaign
In Our Own Voice: National Black Women's Reproductive Justice Agenda
Jewish Women International
Medical Students for Choice
NARAL Pro-Choice America
NASTAD
National Abortion Federation
National Asian Pacific American Women's Forum (NAPAWF)
National Association of County and City Health Officials
National Association of Nurse Practitioners in Women's Health
National Council of Jewish Women
National Family Planning & Reproductive Health Association
National Hispanic Medical Association
National Institute for Reproductive Health (NIRH)
National Latina Institute for Reproductive Health
National LGBTQ Taskforce Action Fund
National Medical Association
National Network of Abortion Funds
National Organization for Women
National Partnership for Women & Families
National Women's Health Network
National Women's Law Center
NCSD
Nurses for Sexual and Reproductive Health
PAI
People For the American Way
Physicians for Reproductive Health
Planned Parenthood Federation of America
Population Connection Action Fund
Population Institute
Positive Women's Network--USA
Power to Decide
Reproductive Health Access Project
Ryan White Medical Providers Coalition
Sexuality Information and Education Council of the United States
(SIECUS)
Silver State Equality
Society for Adolescent Health and Medicine
Society for Maternal-Fetal Medicine
The AIDS Institute
Treatment Action Group (TAG)
Union for Reform Judaism
URGE: Unite for Reproductive & Gender Equity
Women of Reform Judaism
YWCA USA
______
Prepared Statement of the Federation of American Societies for
Experimental Biology
The Federation of American Societies for Experimental Biology
(FASEB) respectfully requests a minimum of $41.6 billion in fiscal year
2020 for the National Institutes of Health (NIH) within the Department
of Health and Human Services.
The National Institutes of Health (NIH) is the Nation's largest
funder of biomedical research, providing competitive grants to more
than 300,000 scientists working at universities, medical schools,
independent research institutions, and companies across the country.
NIH is fueling new research breakthroughs that are transforming
medicine. For example, a 2018 Nobel Prize recognized NIH-funded basic
research that laid the foundation for cancer immunotherapy.\1\ And new
research may soon lead to more progress: a universal flu vaccine, a
cure for sickle-cell disease, and new ways to combat the opioid
epidemic.\2,3,4\
---------------------------------------------------------------------------
\1\ NIH grantee wins 2018 Nobel Prize in Physiology or Medicine,
October, 2018.
\2\ Universal Influenza Vaccine Research National Institute of
Allergy and Infectious Disease, Bethesda, MD.
\3\ NIH launches initiative to accelerate genetic therapies to cure
sickle cell disease, September, 2018
\4\ NIH HEAL Initiative.
---------------------------------------------------------------------------
Innovations derived from basic biomedical research also lead to new
companies and industries. The human genome project alone is estimated
to have spurred nearly $1 trillion of economic activity.\5\
---------------------------------------------------------------------------
\5\ Battelle/United for Medical Research. The impact of genomics on
the U.S. economy, June 2013.
---------------------------------------------------------------------------
Congress's renewed commitment to NIH has enabled groundbreaking
discoveries. But more work must be done to rebuild our Nation's
research capacity; in real dollars, the NIH budget is approximately 9.5
percent below the fiscal year 2003 level (Figure 1).
Continued progress toward new cures and better therapies also
requires strong support for early career scientists. The current
funding environment makes it difficult for younger scientists to
establish and maintain independent research careers, and to pursue
innovative scientific directions.\6\ Sufficient support is needed for
these scientists who represent the future of biomedical research in the
United States.
---------------------------------------------------------------------------
\6\ Sustaining Discovery in the Biological and Biomedical Sciences:
A Framework for Discussion. Federation of American Societies for
Experimental Biology, Bethesda, MD.
---------------------------------------------------------------------------
A $41.6 billion budget ($2.5 billion above fiscal year 2019) would
allow NIH to accelerate progress in all areas of biomedical science and
help train the next generation of scientists. This funding level could
support about 400 additional young investigators; provide $500 million
already authorized through the 21st Century Cures Act for key research
initiatives; and bolster other areas in urgent need of additional
resources, including investment in new research technologies such as
cryogenic electron microscopy.
faseb fiscal year 2020 recommendation: at least $41.6 billion for nih
[This statement was submitted by Benjamin H. Krinsky, PhD,
Associate Director for Legislative Affairs, Federation of American
Societies for Experimental Biology.]
______
Prepared Statement of the Federation of Associations in Behavioral and
Brain Sciences
The Federation of Associations in Behavioral and Brain Sciences
(FABBS) represents 23 scientific societies and 58 university
departments whose scientific members and faculty share a commitment to
advancing knowledge in the sciences of mind, brain, and behavior.
Understanding the human element of our most pressing challenges through
research in these sciences have a potential to improve the health and
education of our citizens. FABBS appreciates the opportunity to submit
testimony in support of the Federal agencies investing in behavioral
and cognitive science. For fiscal year 2020, FABBS encourages your
subcommittee to provide the National Institutes of Health (NIH) with a
budget of at least $41.6 billion, the National Center for Health
Statistics (NCHS) within the Center for Disease Control a budget of at
least $175 million, and the Institute of Education Sciences (IES),
within the Department of Education a budget of $670 million.
FABBS would like to thank this subcommittee for the strong
bipartisan vision and diligence last year. The community is extremely
grateful that this subcommittee successfully completed a final Labor,
Health and Human Services, Education budget for fiscal year 2019,
sparing these agencies from experiencing an extended government shut
down. We very much hope that we will see similar success funding these
agencies for fiscal year 2020.
National Institutes of Health. We sincerely thank the Labor HHS
Appropriations Subcommittee for its diligent work and considerable
increases to NIH over the past 4 years. As members of the Ad Hoc Group
for Medical Research and the Coalition for Health Funding, FABBS
recommends at least $41.6 billion for NIH in fiscal year 2020. 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. The Office of Behavioral and Social Science Research
(OBSSR) plays a particularly important role supporting the mission of
NIH. OBSSR was created to coordinate and promote basic, clinical, and
translational behavioral and social science research at the NIH. While
the NIH budget has grown in recent years, funding for OBSSR has
remained stagnant. We recognize that, located in the Office of the
Director, OBSSR does not have a specific appropriation. Nonetheless,
FABBS appreciates the opportunity to express support for OBSSR,
underscore its key role supporting the mission of NIH, and raise
concerns about recent flat funding.
Consistent with the Friends of the National Institute of Child
Health and Human Development (NICHD), FABBS encourages the subcommittee
to provide $1.6 billion to NICHD in fiscal year 2020, an increase of
$94 million over fiscal year 2019. NICHD supports a range of research
on behavior and child development, and has made important progress
developing complex tools to measure children's cognitive, emotional,
and social functioning. To build on these successes, additional funding
for NICHD would enable 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 inclusive of
underrepresented and vulnerable groups. Additional funding would also
allow for more research on integrated behavioral health in primary care
settings, including cost effectiveness comparisons, and impact of
behavioral interventions on mental health, physical health, and quality
of life.
National Center for Health Statistics, Center for Disease Control--
As members of the Friends of NCHS, FABBS urges the Subcommittee to
appropriate $175 million to NCHS in fiscal year 2020. We greatly
appreciate the Subcommittee's longstanding support of NCHS and the data
it produces on all aspects of our healthcare system, such as opioid and
prescription drug use, healthcare disparities, and causes of death.
Communities across the country rely on the high-quality data provided
by NCHS to understand and improve health. With additional funding, NCHS
could modernize surveys and data collection to produce information more
quickly and efficiently, while reducing the reporting burden on local
data providers.
Institute of Education Sciences, U.S. Department of Education--As
members of the Friends of IES, FABBS encourages the subcommittee to
appropriate at least $670 million to IES in fiscal year 2020. This
funding level would restore IES to the fiscal year 2011 real dollar
purchasing power level. IES is a semi-independent, nonpartisan branch
of the U.S. Department of Education and is the research foundation for
improving and evaluating teaching and learning. The four centers--the
National Center for Education Statistics (NCES), National Center for
Education Research (NCER), National Center for Special Education
Research (NCSER) and National Center for Education Evaluation (NCEE)--
work collaboratively to efficiently and comprehensively produce and
disseminate rigorous research and high-quality data and statistics.
We recognize the pressing need to raise the budget caps.
Accordingly, we have been working in collaboration with the broad
scientific society, as well as with State and local colleagues, in
health, education, and hundreds of other groups affected by non-defense
discretionary funding, to encourage members of Congress to raise the
caps so that we can complete the budget process, fund vital research,
and keep our government working.
Thank you for the opportunity to express support for the following
fiscal year 2020 budget requests:
--National Institutes of Health at least $41.6 billion
--National Center for Health Statistics at least $175 million
--Institute of Education Sciences at least $670 million
These investments to strengthen behavioral and cognitive research
are critical to the health and education of our citizens. Thank you for
considering this request.
FABBS Member Societies:
American Educational Research Association, American Psychological
Association, Association for Applied Psychophysiology and Biofeedback,
Association for Behavior Analysis, Behavior Genetics Association,
Cognitive Science Society, International Society for Developmental
Psychobiology, Massachusetts Neuropsychological Society, National
Academy of Neuropsychology, The Psychonomic Society, Society for
Behavioral Neuroendocrinology, Society for Computers in Psychology,
Society for Judgement and Decision Making, Society for Mathematical
Psychology, Society for Psychophysiological Research, Society for the
Psychological Study of Social Issues, Society for Research in Child
Development, Society for Research in Psychopathology, Society for the
Scientific Study of Reading, Society for Text & Discourse, Society of
Experimental Social Psychology, Society of Multivariate Experimental
Psychology, Vision Sciences Society
FABBS Affiliates:
APA Division 1: The Society for General Psychology; APA Division 3:
Experimental Psychology; APA Division 7: Development Psychology; APA
Division 28: Psychopharmacology and Substance Abuse; Arizona State
University; Binghamton University--Psychology; Boston College-
Psychology; Boston University--Psychology; California State University
at Fullerton--Psychological and Brain Sciences; Carnegie Mellon
University--Psychology; Cornell University--Psychology; Columbia
University--Psychology; Duke University--Psychology and Neuroscience;
Florida State University--Psychology; Georgetown University--
Psychology; George Washington University--Psychology; Georgia Institute
of Technology--Psychology; Harvard University--Psychology; Indiana
University Bloomington--Psychology; Indiana University Purdue
University Indianapolis--Psychology; Johns Hopkins University--
Psychological and Brain Sciences; Kent State University--Psychological
Sciences; Lehigh University--Psychology; New York University--
Psychology; Northeastern University--Psychology; Northwestern
University--Psychology; Ohio State University--Center for Cognitive and
Brain Sciences; Pennsylvania State University--Psychology; Princeton
University--Psychology; Purdue University--Psychological Sciences; Rice
University--Psychology; Southern Methodist University--Psychology;
Stanford University--Psychology; Syracuse University--Psychology;
Temple University--Psychology; University of Arizona--Psychology;
University of California at Berkeley--Psychology; University of
California at Davis--Psychology; University of California at Los
Angeles--Psychology; University of California at Riverside--Psychology;
University of California at San Diego--Psychology; University of
Chicago--Psychology; University of Cincinnati--Psychology; University
of Delaware--Psychological & Brain Sciences; University of Houston--
Psychology; University of Illinois at Urbana--Champaign--Psychology;
University of Iowa--Psychological and Brain Sciences; University of
Maryland at College Park--Psychology; University of Massachusetts at
Amherst--Psychological and Brain Sciences; University of Michigan--
Psychology; University of Minnesota--Psychology; University of
Minnesota--Institute of Child Development; University of North Carolina
at Greensboro--Psychology; University of Pennsylvania--Psychology
University of Pittsburgh--Psychology; University of Texas at Austin--
Psychology; University of Texas at Dallas--School of Behavioral and
Brain Sciences; University of Virginia--Psychology; University of
Washington--Psychology, Vanderbilt University--Psychological Sciences;
Virginia Tech--Psychology; Wake Forest University--Psychology;
Washington University in St. Louis--Psychology
[This statement was submitted by Juliane Baron, Executive Director,
Federation of Associations in Behavioral and Brain Sciences.]
______
Prepared Statement of the Fred Hutchinson Cancer Research Center
Fred Hutchinson Cancer Research Center (Fred Hutch) is grateful to
Congress for providing strong, reliable funding for the National
Institutes of Health (NIH), a key national priority. The Nation's
investment in NIH research pays a lifetime of dividends in better
health and improved quality of life for all Americans. In fiscal year
2020, Fred Hutch recommends at least $41.6 billion for the NIH,
including funds provided to the agency through the 21st Century Cures
Act (Public Law 114-255) for targeted initiatives. These funding levels
would continue the momentum of recent increases by enabling meaningful
base budget growth above inflation, while ensuring the NIH Innovation
Account created by the 21st Century Cures Act supplements the agency's
base budget through dedicated funding for specific programs, as
intended.
Through the strong, bipartisan action of this Subcommittee's
leaders, Chairman Roy Blunt and Ranking Member Patty Murray, Congress
is helping the agency regain lost ground after years of effectively
flat budgets. In the fiscal year 2019 minibus bill, the Subcommittee's
leadership ensured continued progress by providing a substantial
increase to all NIH institutes and centers, in addition to dedicated
funding through the 21st Century Cures Act and other funding devoted to
specific priorities.
The Federal investment in biomedical research has yielded a
significant number of scientific advances that help improve health
outcomes for patients. NIH funding enables Fred Hutch to redefine what
is possible across the full spectrum of biomedical research. Fred Hutch
is committed to working with Congress and the Administration to further
bipartisan support for increasing Federal investment in biomedical
discovery and ensuring NIH remains a top priority in fiscal year 2020
and beyond.
about fred hutch
Fred Hutch, founded in 1975, is designated by the National Cancer
Institute (NCI) as a Comprehensive Cancer Center with the mission to
eliminate cancer and related diseases as causes of human suffering and
death. Fred Hutch's interdisciplinary team of world-renowned scientists
and humanitarians work together to prevent, diagnose, and treat cancer,
HIV/AIDS, and other diseases. Our Nobel Prize winning discoveries began
in the 1970s with Dr. E. Donnall Thomas' work in bone marrow
transplantation, providing the first definitive and reproducible
example of the power of the human immune system's ability to cure
cancer.
Today, Fred Hutch continues to pave the way in groundbreaking
research to understand the fundamental biological mechanisms of cancers
and infectious diseases, develop new methods of diagnosis and
treatment, and generate new knowledge to help individuals and
communities reduce the incidence and death rates from these causes of
human suffering and death. Below are some examples of how NIH funding
drives Fred Hutch innovation and accelerates research advancements in
cancer and other diseases.
--Advancing Next Generation Cancer Immunotherapy.--Fred Hutch is
paving the way for the next generation of immunotherapy
treatments that harness the body's own immune system to fight
cancer. Studies conducted by our scientists show these
therapies can be more effective than conventional drugs,
radiation, or surgery.
--A New Path Toward a Cancer Vaccine.--Fred Hutch researchers
discovered the first human antibody against the Epstein-Barr
virus, the first virus shown to cause cancer in humans. This
discovery opens a new path toward a vaccine to block infection
and potentially prevent about 200,000 cancer cases a year.
--Discoveries in Women's Health.--Launched in 1991 with a NIH grant,
the Women's Health Initiative is one of the largest U.S.
prevention studies of its kind and the largest, most ethnically
and geographically diverse study of older women. A single study
from the Women's Health Initiative, based at Fred Hutch,
showing the health risks of combined hormone therapy led to
tens of thousands fewer cases of breast cancer, heart disease
and stroke, and venous thromboembolism between 2003 and 2012.
This study generated a net return of $37.1 billion--roughly
$140 on every dollar invested in the trial.
--Milestones in Efforts Against HIV.--Fred Hutch began its HIV
research in 1988, and today leads the HIV Vaccine Trials
Network (HVTN) supported by the National Institute of Allergy
and Infectious Diseases (NIAID). HVTN is the world's largest
publicly-funded international collaboration focused on the
development of vaccines to prevent HIV/AIDS.
--Breakthroughs in Cancer Prevention.--Fred Hutch research extends to
other infectious diseases, reflecting a growing understanding
that eradicating certain infectious diseases can reduce the
world's cancer burden. NCI-funded research at Fred Hutch showed
strains of the human papillomavirus (HPV) cause nearly all
cervical cancers. The team also found a way to produce virus-
like particles that could trigger an immune response, paving
the way for today's cancer-preventing HPV vaccines.
--The Quest for a Universal Flu Vaccine.--Scientists at Fred Hutch
are studying the molecular evolution of the influenza virus
from the virus' perspective to better understand how mutations
allow it to escape the body's natural immune defenses and
vaccination attempts. This basic understanding can be used to
help inform future vaccine design.
--Tracking Communicable Diseases in Real Time.--To better understand
the spread of infectious diseases, Fred Hutch scientists are
sequencing data from pathogens, in real time, to form models
that provide inferences that are actionable to public health.
This approach is being used in viral systems such as influenza,
ebola, zika, and measles.
--Leveraging Data Science to Defeat Cancer.--Fred Hutch is gathering
vast amounts of data about health and disease, from DNA and RNA
sequencing, to digital imaging. Our researchers are currently
using the latest computational technologies to catalogue the
working molecular components of cells that are involved in
cancer and other life-threatening illnesses. Data about genes,
proteins, and processes involved in cancer and the immune
system can be searched for previously hidden patterns--clues
that can lead to cures. With the right information about cancer
biology and the right analytical tools, we can transform cancer
prevention, diagnosis, and treatment.
the value of federally-funded biomedical research
The Federal Government has an irreplaceable role in supporting
biomedical research. No other public, corporate, or charitable entity
is willing or able to provide broad and sustained funding for cutting-
edge research necessary to yield new innovations and technologies of
the future. The partnership between NIH and America's scientists and
research institutions is a unique and highly-productive relationship
that leverages the full strength of our Nation's research enterprise to
foster discovery, improve our understanding of the underlying cause of
disease, and develop the next generation of biomedical innovations--and
innovators--that deliver better treatments and cures to patients.
As an independent research institute with its sole mission to
pursue lifesaving discoveries, Fred Hutch depends on NIH funding to
focus on basic, translational, clinical, public health, and infectious
disease research, and to respond quickly to the research needs of the
country. In addition to supporting robust funding, Fred Hutch opposes
provisions--such as directives to reduce the salary limit for
extramural researchers--which would harm the integrity of the research
enterprise and disproportionately affect independent research
institutes. Policies to cut salary support hinder the center's research
mission and ability to recruit and retain the talented researchers who
make U.S. institutions global leaders in advancing the biomedical
sciences and improving and saving lives.
The NIH initiatives focusing on career development and recruitment
of a diverse scientific workforce are important to innovation in
biomedical research and public health. Robust increases to the NIH
budget are critical to fostering the next generation of scientists, as
training funds work to attract the brightest minds to pursue a career
in research. Fred Hutch is committed to training the current and next
generation of scientific leaders from diverse backgrounds and supports
NIH efforts to address challenges faced by investigators seeking to
launch and sustain their research careers.
conclusion
Fred Hutch thanks the Subcommittee for its important work dedicated
to ensuring the health of the Nation and for its strong support for NIH
funding in fiscal year 2019. We appreciate the opportunity to urge the
Subcommittee to provide at least $41.6 billion in fiscal year 2020 for
NIH, including funds provided to the agency through the 21st Century
Cures Act for targeted initiatives, which is the next step toward a
multi-year increase in our Nation's investment in biomedical research.
Advances in bioscience, technology, and data science have brought us to
an inflection point. This is not a time to pull back. Given the
abundance of scientific opportunity, this recommendation represents a
minimum investment to sustain progress that only would be amplified
through an even more robust commitment.
[This statement was submitted by Gary Gilliland, MD, PhD, President
and
Director, Fred Hutchinson Cancer Research Center.]
______
Prepared Statement of the Friends of the
National Institute on Drug Abuse
Thank you for the opportunity to submit testimony in support of the
National Institute on Drug Abuse (NIDA). The Friends of the National
Institute on Drug Abuse is a coalition working with about 150 scholarly
organizations with a total membership of at least 2 million scholars,
clinicians and educators who are committed to eliminating drug abuse in
society. Realizing the very limited support for research in this area
from either philanthropy or industry causes us to realize that over 80
percent of all research in this area must come from NIDA. 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. Clearly research
has proven to be important in this area. 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. Clearly the investment in research has
paid off for so many families. We need more research in all areas of
basic and clinical science to make additional advances.
In the fiscal year 2020 Labor-HHS Appropriations bill, we request
that the subcommittee provide at least $2.5 billion above the fiscal
year 2019 level for the National Institutes of Health (NIH), and within
that amount a proportionate increase for the National Institute on Drug
Abuse (NIDA) using the Institute's conferenced level of $1,419,844,000
as NIDA's base budget for Fiscal 2020. In addition, within the NIH
total, we request at least $500 million for targeted research on opioid
misuse and addiction, development of opioid alternatives, pain
management, and addiction treatment, of which at least $250 million is
allocated to NIDA and included in its base budget for Fiscal 2020. We
also respectfully request the inclusion of the following NIDA specific
report language.
Opioid Initiative. The Committee continues to be extremely
concerned about the epidemic of prescription opioids, heroin, and
illicit synthetic opioid use, addiction and overdose in the U.S.
Approximately 174 people die each day in this country from drug
overdose (over 100 of those are directly from opioids), making it one
of the most common causes of non-disease-related deaths for adolescents
and young adults. This crisis has been exacerbated by the availability
of illicit fentanyl and its analogs in many communities. The Committee
appreciates the important role that research plays in the various
Federal initiatives aimed at this crisis. To combat this crisis, the
bill includes at least $250,000,000 for research related to preventing
and treating opioid misuse and addiction. With additional funding for
NIDA targeted at addressing the opioid epidemic, the Institute's opioid
specific allocation should be targeted for the following areas:
development of safe and effective medications and new formulations and
combinations to treat opioid use disorders and to prevent and reverse
overdose; conduct demonstration studies to create a comprehensive care
model in communities nationwide to prevent opioid misuse, expand
treatment capacity, enhance access to overdose reversal medications,
and enhance prescriber practice; test interventions in justice system
settings to expand the uptake of medication assisted treatment and
methods to scale up these interventions for population-based impact;
and develop evidence-based strategies to integrate screening and
treatment for opioid use disorders in emergency department and primary
care settings.
Addressing the Opioid Crisis in Rural Regions. The Committee
encourages NIDA to continue its partnership with the CDC, SAMHSA, and
the Appalachian Regional Commission in support of research to help
communities develop comprehensive approaches to prevent and treat
consequences of opioid injection, including substance use disorders,
overdose, HIV, hepatitis B and C virus infections, as well as sexually
transmitted diseases. These projects will serve as models for
addressing opioid injection epidemics that can be implemented by health
systems in similar rural communities in the U.S.
Raising Awareness and Engaging the Medical Community in Drug Abuse
and Addiction Prevention and Treatment. Education is a critical
component of any effort to curb drug use and addiction, and it must
target every segment of society, including healthcare providers
(doctors, nurses, dentists, and pharmacists), patients, and families.
Medical professionals must be in the forefront of efforts to curb the
opioid crisis. The Committee continues to be pleased with the NIDAMED
initiative, targeting physicians-in-training, including medical
students and resident physicians in primary care specialties (e.g.,
internal medicine, family practice, and pediatrics). NIDA should
continue its efforts in this space, providing physicians and other
medical professionals with the tools and skills needed to incorporate
substance use and misuse screening and treatment into their clinical
practices.
Marijuana Research. The Committee is concerned that marijuana
public policies in the States (medical marijuana, recreational use,
etc.) are being changed without the benefit of scientific research to
help guide those decisions. NIDA is encouraged to continue supporting a
full range of research on the health effects of marijuana and its
components, including research to understand how marijuana policies
affect public health.
The HEALthy Brain and Child Development (BCD) Study. The Committee
recognizes and supports the NIH HEALthy Brain and Child Development
Study, which will establish a large cohort of pregnant women from
regions of the country significantly affected by the opioid crisis and
follow them and their children for at least 10 years. This knowledge
will be critical to help predict and prevent some of the known impacts
of pre- and postnatal exposure to drugs or adverse environments,
including risk for future substance use, mental disorders, and other
behavioral and developmental problems. The Committee recognizes that
the BCD Study is supported in part by the NIH HEAL Initiative?, and
encourages other NIH Institutes, such as NICHD, NIMH, NHLBI, NCI,
NIAAA, NIMH, NINR, as well as the Office of the Director to support
this important study.
Electronic Cigarettes. The Committee understands that electronic
cigarettes (e-cigarettes) and other vaporizing equipment are
increasingly popular among adolescents, and requests that NIDA fund
research on the use and consequences of these devices. The Committee
also supports the Population Assessment of Tobacco and Health (PATH)
Study, a collaboration between NIDA and the U.S. Food and Drug
Administration (FDA) Center for Tobacco Products to help scientists
learn how and why people start using tobacco products, quit using them,
and start using them again after they have quit, as well as how
different tobacco products affect health outcomes over time.
Barriers to Research. The Committee is concerned that restrictions
associated with Schedule I of the Controlled Substance Act effectively
limit the amount and type of research that can be conducted on certain
Schedule I drugs, especially marijuana or its component chemicals and
new synthetic drugs and analogs. At a time when we need as much
information as possible about these drugs to find antidotes for their
harmful effects, we should be lowering regulatory and other barriers to
conducting this research. The Committee directs NIDA to provide a short
report on the barriers to research that result from the classification
of drugs and compounds as Schedule I substances.
Drug abuse is costly to Americans; it ruins lives, while tearing at
the fabric of our society and taking a financial toll on our resources.
Over the past three decades, NIDA-supported research has revolutionized
our understanding of addiction as a chronic, often-relapsing brain
disease -this new knowledge has helped to correctly emphasize the fact
that drug addiction is a serious public health issue that demands
strategic solutions.
NIDA supports a comprehensive research portfolio that spans the
continuum of basic neuroscience, behavior and genetics research through
medications development and applied health services research and
epidemiology. While supporting research on the positive effects of
evidence-based prevention and treatment approaches, NIDA also
recognizes the need to keep pace with emerging problems. We have seen
encouraging trends in strategies to address these problems, but areas
of continuing significant concern include the recent increase in
lethalities due to heroin and synthetic fentanyl, as well as continued
abuse of prescription opioids. Our knowledge of how drugs work in the
brain, their health consequences, how to treat people already addicted,
and what constitutes effective prevention strategies has increased
dramatically due to research. However, since the number of individuals
who are affected is still rising, we need to continue the work until
this disease is both prevented and eliminated from society.
We understand that the fiscal year 2020 budget cycle will involve
setting priorities and accepting compromise, however, in the current
climate we believe a focus on substance abuse and addiction deserves to
be prioritized accordingly. Thank you for your support for the National
Institute on Drug Abuse.
______
Prepared Statement of the Friends of the Health Resources and Services
Administration Coalition
The Friends of HRSA coalition is a nonpartisan coalition of nearly
170 national organizations representing tens of millions of public
health and healthcare professionals, academicians and consumers
invested in the Health Resources and Services Administration's mission
to improve health outcomes and achieve health equity. We are pleased to
submit our request of $8.56 billion for the Health Resources and
Services Administration in fiscal year 2020. We strongly urge you to
reject the many proposed cuts to important HRSA programs contained in
the president's fiscal year 2020 budget proposal.
HRSA's 90-plus programs and more than 3,000 grantees support tens
of millions of geographically isolated, economically or medically
vulnerable people, in every State and U.S. territory, to achieve
improved health outcomes by increasing access to quality healthcare and
services; fostering a healthcare workforce able to address current and
emerging needs; enhance population health and address health
disparities through community partnerships; and promote transparency
and accountability within the healthcare system. The agency is a
national leader in improving the health of Americans by addressing the
supply, distribution and diversity of health professionals and
supporting training in contemporary practices, and providing high-
quality health services to populations who may otherwise not have
access to healthcare.
HRSA programs work in coordination with each other to maximize
resources and leverage efficiencies. For example, Area Health Education
Centers, a health professions training program, was originally
authorized at the same time as the National Health Service Corps to
increase the number of primary care providers at health centers and
other direct providers of healthcare services for underserved areas and
populations. AHECs play an integral role to recruit providers into
primary healthcareers, diversify the workforce and develop a passion
among future providers for service to the Nation's underserved
communities.
HRSA's programs also work in collaboration across the Federal
Government to enhance health outcomes. For example, HRSA's HIV/AIDS
Bureau partners with the Office of the Assistant Secretary for Health,
the Centers for Disease Control and Preventions, the Substance Abuse
and Mental Health Services Administration, the Centers for Medicare and
Medicaid Services, the Indian Health Services, the National Institutes
of Health, the Agency for Healthcare Research and Quality, the
Department of House and Urban Development, the Department of Veterans
Affairs and the Department of Justice to ensure an effective use of
resources, and a coordinated and focused public health response to the
HIV epidemic. This Federal response has contributed to the number of
annual HIV infections dropping 18 percent since 2008, with HRSA's Ryan
White HIV/AIDS Program serving as the foundation for delivering
healthcare and support services to reach the public health goal of
ending the HIV epidemic. Despite this success, an estimated 1.1 million
people in the U.S. are living with HIV today, and nearly 40,000 become
newly infected every year--1 in 7 of whom are unaware of their
infection. HRSA programs will play an integral role in achieving the
public health goal of ending the HIV epidemic.
HRSA grantees also play an active role in addressing emerging
health challenges. For example, HRSA's grantees provide outreach,
education, prevention, screening and treatment services for populations
affected by health emergencies such as the opioid epidemic. However,
much of this work required additional funding to increase capacity in
health centers, support National Health Service Corps providers to
deliver relevant care and expand rural health services. Strong,
sustained funding would allow HRSA to quickly and effectively respond
to emerging and unanticipated future health needs across the U.S.,
while continuing to address persistent health challenges.
HRSA programs and grantees are providing innovative and successful
solutions to some of the Nation's greatest healthcare challenges
including the rise in maternal mortality, the severe shortage of health
professionals, the high cost of healthcare, and behavioral health
issues related to substance use disorder--including opioid misuse. We
are grateful for the increases provided for HRSA programs in fiscal
year 2019, however HRSA's discretionary budget authority remains nearly
20 percent below the fiscal year 2010 level (adjusted for inflation).
We recommend Congress build upon the important increases they provided
for HRSA programs in fiscal year 2019 and provide $8.56 billion for
HRSA's total discretionary budget authority in fiscal year 2020.
Additional funding will allow HRSA to pave the way for new achievements
and continue supporting critical HRSA programs, including:
--Primary care programs support more than 11,000 health center sites
in every State and territory, improving access to preventive
and primary care for more than 28 million people in geographic
areas with few healthcare providers. Health centers coordinate
a full spectrum of health services including medical, dental,
vision, behavioral and social services in the Nation's most
underserved communities. Health centers reach 1 in 3 people
living at or below the Federal poverty line; 1 in 5 rural
residents; 1 in 5 uninsured persons; and 1 in 6 Medicaid
beneficiaries.
--Health workforce programs support the education, training,
scholarship and loan repayment of primary care physicians,
nurses, oral health professionals, optometrists, physician
assistants, nurse practitioners, clinical nurse specialists,
public health personnel, mental and behavioral health
professionals, pharmacists and other allied health providers.
With an emphasis on primary care and training in
interdisciplinary, community-based settings, these are the only
Federal programs focused on filling the gaps in the supply of
health professionals, as well as improving the geographic
distribution and diversity of the workforce.
--Maternal and child health programs, including the Title V Maternal
and Child Health Block Grant, Healthy Start and others, support
initiatives designed to promote optimal health, reduce
disparities, combat infant and maternal mortality, prevent
chronic conditions and improve access to quality healthcare for
mothers and babies. MCH programs help assure that nearly all
babies born in the U.S. are screened for a range of serious
genetic or metabolic diseases, and that coordinated long-term
follow-up is available for babies with a positive screen. They
also help improve early identification and coordination of care
for children with sensory disorders, autism and other
developmental disabilities. The MCH Block Grants funded 59
States and jurisdictions to provide healthcare and public
health services for an estimated 56 million people, reaching 86
percent of pregnant women, 99 percent of infants, and 55
percent of children nationwide.
--HIV/AIDS programs provide the largest source of Federal
discretionary funding assistance to States and communities most
severely affected by HIV/AIDS. The Ryan White HIV/AIDS Program
delivers comprehensive care, prescription drug assistance, and
support services to 550,000 people impacted by HIV/AIDS. HRSA's
Ryan White HIV/AIDS Program effectively engages clients in
comprehensive care and treatment, including increasing access
to HIV medication, which has resulted in 86 percent of clients
achieving viral suppression, compared to just 59 percent of all
people living with HIV nationwide. Additionally, the program
provides education and training for health professionals
treating people with HIV/AIDS, and works toward addressing the
disproportionate impact of HIV/AIDS on racial and ethnic
minorities.
--Title X ensures access to a broad range of reproductive, sexual and
related preventive health services for more than 4 million
women, men and adolescents, with priority given to low-income
individuals. Services include patient education and counseling
for family planning; provision of contraceptive methods;
cervical and breast cancer screenings; sexually transmitted
disease prevention education, testing and referral; and
pregnancy diagnosis. This program helps improve maternal and
child health outcomes and promotes healthy families.
--Rural health programs improve access to care for people living in
rural areas. The Office of Rural Health Policy serves as the
Nation's primary advisor on rural policy issues, conducts and
oversees research on rural health issues and administers grants
to support healthcare delivery in rural communities. Rural
health programs are designed to support community-based disease
prevention and health promotion projects, help rural hospitals
and clinics implement new technologies and strategies and build
health system capacity in rural and frontier areas.
--Special programs include the Organ Procurement and Transplantation
Network, the National Marrow Donor Program, the C.W. Bill Young
Cell Transplantation Program and National Cord Blood Inventory.
These programs maintain and facilitate organ marrow and cord
blood donation, transplantation and research, along with
efforts to promote awareness and increase organ donation rates.
Special programs also include the Poison Control Program, the
Nation's primary defense against injury and death from
poisoning for over 50 years. Poison control centers contribute
to significantly decreasing a patient's length of stay in a
hospital and save the Federal Government $662.8 billion each
year in medical costs and lost productivity.
Our recommendation is based on the need to continue improving the
health of Americans and to provide HRSA with the resources needed to
pave the way for new achievements. We urge you to consider HRSA's
central role in strengthening the Nation's health and advise you to
adopt our fiscal year 2020 request of $8.56 billion for HRSA's
discretionary budget authority. Thank you for the opportunity to submit
our recommendation to the subcommittee.
[This statement was submitted by Gaby Witte, Senior Manager of
Government Relations, American Public Health Association.]
______
Prepared Statement of the Friends of the Institute of Education
Sciences
Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee; thank you for the opportunity to submit written testimony
on behalf of the Friends of IES, a consortium of scientific and
professional societies, research universities, and independent research
organizations interested in supporting the mission of IES and the use
of research and statistics. We urge you to include $670 million for the
Institute of Education Sciences (IES) in the fiscal year 2020 Labor,
Health and Human Services, and Education Appropriations bill.
IES is the independent and nonpartisan statistics, research, and
evaluation arm of the U.S. Department of Education charged with
supporting and disseminating rigorous scientific evidence on which to
ground education policy and practice. As such, it serves as the
critical Federal source for funding groundbreaking research in myriad
aspects of teaching and learning, as well as rigorous analysis of
educational programs and initiatives.
Its four centers--the National Center for Education Statistics
(NCES), National Center for Education Research (NCER), National Center
for Special Education Research (NCSER) and National Center for
Education Evaluation (NCEE)--work collaboratively to efficiently and
comprehensively deliver rigorous research and high-quality data and
statistics. This information is essential to address our Nation's most
pressing educational challenges and to help States and districts build
a culture of evidence-driven policy.
Our member organizations rely on IES to support vital research that
probes many of the most important questions confronting American
education--from literacy and numeracy at the elementary level, to the
integration of technology in teaching and learning, to advancing STEM
education, to closing achievement gaps at every level of our
educational systems. Yet, only one of every ten grant proposals
receives funding support, limiting the ability of IES to support
emerging lines of inquiry and tackle pressing questions about
education, such as what can be done to increase school safety, address
challenges facing rural districts, support improved teacher
professional development and supports, and bolster the impact of
technology in the classroom.
The National Center for Education Statistics (NCES) compiles and
disseminates important, scientifically valid data on the condition of
education that is essential to the research being conducted across the
Nation. NCES also provides the funding support and infrastructure for
the State Longitudinal Data Systems, which have helped States link K-
12, postsecondary, and workforce systems to gain a better understanding
of education and workforce outcomes and serve as the basis of tools
such as early warning systems that identify students at risk of
dropping out of school.
The Regional Educational Laboratories (RELs) conduct applied
research that is directly relevant to State and district
administrators, principals and teachers. RELs also ensure that research
is shared widely through its deep dissemination networks. Recent work
across the REL network has focused on literacy, including the
development of a rubric for evaluating reading/language arts
instructional materials for kindergarten to grade 5; a self-study guide
for implementing early literacy interventions; and a study on time to
language proficiency for Hispanic English learner students. With
additional resources the RELs could produce additional research-based
materials so that educators may better serve these incredibly diverse
regions. Moreover, IES helps inform policymakers, practitioners, and
State and local governments about the most effective strategies,
interventions, curricula and teacher training, through the What Works
Clearinghouse powered by IES.
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 includes the development and evaluation of positive
behavior supports strategies, programs to support students who
experience reading difficulties, and interventions to foster self-
determination in students with disabilities as they transition into
adulthood. With a budget that is only two-thirds of the amount
appropriated in 2005, NCSER has been unable to fund critical topics
such as special education teacher quality and shortages, high leverage
practices, and potential linkages between students with disabilities
and enrollment in developmental education classes in higher education.
Public education expenditures generally account for a significant
share of State and local budgets. As States continue to implement the
Every Student Succeeds Act (ESSA)'s provisions to promote evidence-
based, innovative educational practices, it is more important than ever
for the Federal Government to provide robust funding to the agency
charged with compiling and disseminating evidence-based educational
research and data. The Foundations for Evidence-based Policymaking Act
also calls for the Federal Government to leverage statistical
information and rigorous evaluations for informing policy.
To this end, we urge the Committee to support funding IES at $670
million in fiscal year 2020. 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 is 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
Center for Health Statistics
As Chair of the Friends of the National Center for Health
Statistics (Friends of NCHS), I am pleased to offer this written
testimony for inclusion in the official committee record. We urge the
Subcommittee to appropriate $175 million in fiscal year 2020 for the
National Center for Health Statistics (NCHS) within the Centers for
Disease Control and Prevention (CDC).
The Friends of NCHS is a coalition representing over 60 scientific,
public health, and research organizations, all of whom rely on the
information produced by the National Center for Health Statistics. We
greatly appreciate the Subcommittee's longstanding support of NCHS and
the data it produces on all aspects of our healthcare system, including
opioid and prescription drug use, maternal and infant mortality,
chronic disease prevalence, healthcare disparities, emergency room use,
health insurance coverage, teen pregnancy, and causes of death.
As a result of the rising costs of conducting surveys and years of
flat or near-flat funding, NCHS has had to focus nearly all of its
resources on continuing to produce the high-quality data that
communities across the country depend on to understand their health.
However, NCHS is also facing an increasingly urgent need to respond to
rising costs, declining response rates, and an ever-more complex
healthcare system. This can only be achieved through investing in much-
needed innovation and modernization that would allow it to produce
better information more quickly and efficiently, while reducing the
reporting burden on local data providers. With additional funding, NCHS
could capitalize on opportunities surrounding advances in statistical
methodology, big data, and computing by:
--Linking data reporting systems and better integrating electronic
health records into NCHS' data production, allowing it to
receive and process information more efficiently, reduce burden
on data providers, and analyze and release statistics faster;
--Researching how to conduct its most complex surveys more
efficiently, making surveys less costly to taxpayers and less
burdensome on participants; and
--Integrating machine learning into its analysis to spot trends in
Americans' health earlier.
Thank you for the opportunity to present this testimony on behalf
of the Friends of NCHS. Please do not hesitate to contact me should you
require additional information.
[This statement was submitted by Julia Milton, Chair, Friends of
the National Center for Health Statistics and Director of Public
Affairs, Consortium of Social Science Associations.]
______
Prepared Statement of the Friends of the National Institute on Aging
Chairman Blunt, Ranking Member Murray, and Members of the Senate
Labor, Health and Human Services, and Education, and Related Agencies
Appropriations Subcommittee, I am Jennifer Pharaoh, chair of the
Friends of the National Institute on Aging (FoNIA). FoNIA is grateful
for your continued commitment to the mission of National Institutes of
Health (NIH), and, in particular, the research supported and conducted
by the National Institute on Aging (NIA). As you prepare the fiscal
year 2020 appropriations legislation, we respectfully request at least
$41.6 billion in funding for the NIH. Within this amount, we request
that an increase of $500 million over fiscal year 2019 levels be
designated in support of cross-Institute aging research initiatives. In
addition, the FONIA requests an increase of at least $350 million above
the final enacted amount for fiscal year 2019 for AD/ADRD research at
the NIH.
The FoNIA is a coalition of more than 50 academic, patient-centered
and non-profit research and aging 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.
With the unprecedented growth in the Nation's aging population,
there is a critical need for robust and sustained Federal investment in
aging research spanning the spectrum of discovery, including research
that builds on the basic science of aging as well as translational
research and clinical application. The numbers illustrate the need: it
is projected that, by 2030, more than 74 million Americans will be 65
or older--more than twice the number in 2000--and representing nearly
21 percent of the total U.S. population. In addition, the number of
adults age 85 or older is expected to triple between 2010 and 2050.
As growing numbers of Americans live well into their 80s, aging-
related diseases and multiple chronic conditions will become an even
larger public health concern. Advancing age is the most important risk
factor for many serious diseases and conditions including Alzheimer's
disease and related forms of dementia (AD/ADRD), diabetes, many types
of heart disease, cancers, osteoporosis and kidney failure.
The NIA sponsors and conducts the lion's share of Federal aging
research that contributes significantly to the improved care and
quality of life of older adults. A key NIA priority is to translate
research into better and more efficient care through the development of
effective interventions that are disseminated to healthcare providers,
patients and caregivers. Transformational tools, including
technological innovations, advance the effective prevention, early
detection, diagnosis and treatment of disease that will help reduce the
burden of illness for older adults and their families.
Such meaningful increases in NIH funding are essential to advancing
research needed to make progress in addressing chronic disease, AD/
ADRD, and other diseases and conditions that disproportionately affect
older adults. For example, the sustained and robust Federal investment
in AD/ADRD research, as supported by the Subcommittee in recent years,
is making it possible for the NIA to continue with the acceleration of
ground-breaking research while building an infrastructure to further
expand the NIA's research footprint in the field.
In addition, NIA plays an instrumental role in facilitating and
supporting aging-related research undertaken by other Institutes.
Several NIA research projects and initiatives are highlighted below:
Health and Retirement Study. The NIA Division of Behavioral and
Social Research supports the Health and Retirement Study, the Nation's
premier source of combined data on health and socioeconomic status of
adults over the age of 50. The data is used to calculate life
expectancy and the costs of age-related conditions and diseases.
Diagnostics. Intramural researchers at the National Institute of
Allergy and Infectious Diseases (NIAID) developed a new ultrasensitive
test to detect tau protein associated with AD and chronic traumatic
encephalopathy (CTE). This new test, adapted from a diagnostic test
originally developed for prion diseases, could be a major advancement
for AD research, diagnostics, and therapy development. The work,
published in Acta Neuropathologica, was partially supported by the NIA.
Mitochondria and Inflammation. An international team of scientists
led by investigators from the NIA Intramural Research Program have
narrowed in on a potential new treatment target for Alzheimer's disease
involving mitochondria, the powerhouses of the cell.
GeroScience Interest Group. The NIA established of the trans-NIH
GeroScience Interest Group (GSIG) to advance initiatives to facilitate
discovery on the common risks and mechanisms behind age-related
diseases. Most NIH Institutes participate in the GSIG, which has held
two summits; a third summit is planned in 2019.
Blood Pressure Control and Mild Cognitive Impairment. In a jointly
funded project from several NIH Institutes, the Systolic Blood Pressure
Intervention Trial (SPRINT) Memory and Cognition in Decreased
Hypertension (SPRINT MIND) trial showed the impact of intensive
management of systolic blood pressure on the reduction in the
occurrence of mild cognitive impairment for participants in the
intensive treatment group. These findings, published in the Journal of
the American Medical Association, suggest encouraging effects of blood
pressure management on cognition.
NIA is at the forefront of discovering and applying scientific
advancements to enhance the health of older adults, lengthen life, and
reduce illness and disability. In fact, to further its work in ensuring
representation of older adults in representative research, the NIH
implemented a new guideline on the inclusion of individuals across the
lifespan. The ongoing efforts to revisit and revise the NIH-wide
inclusion policy, as mandated in the 21st Century Cures Act passed in
2016, were discussed in a Viewpoint Essay published in the Journal of
the American Medical Association in October 2018.
With millions of older Americans facing the loss of their
functional abilities, their independence and their lives to chronic
diseases and conditions of aging, the FoNIA respectfully requests your
continued support for the vital work of the NIA. The FoNIA looks
forward to working with you to secure the necessary resources for the
ground-breaking aging research at the NIA, and across other NIH
Institutes.
Respectfully Submitted.
[This statement was submitted by Jennifer Pharaoh, Chair, 2018-
2019, Friends of the National Institute on Aging.]
______
Prepared Statement of FSH Society
Honorable Chairman Blunt, Ranking Member Murray, and distinguished
members of the Subcommittee, thank you for the opportunity to testify.
Facioscapulohumeral Disease (FSHD) is a heritable disease and one
of the most common neuromuscular disorders with a prevalence of
1:8,000.\1\ It affects 934,000 children and adults of both sexes
worldwide. FSHD is characterized by progressive loss of muscle strength
that is asymmetric and widely variable. Muscle weakness typically
starts at the face, shoulder girdle and upper arms, often progressing
to the legs, torso and other muscles. In addition to affecting muscle
it can bring with it breathing issues, hearing loss, eye problems and
cardiac arrhythmias. FSHD causes significant disability and death.
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\1\ Deenen, J. C. W. et al. Population-based incidence and
prevalence of facioscapulohumeral dystrophy. Neurology 83, 1056-9
(2014).
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FSHD is associated with epigenetic changes at chromosome 4q35 in
the D4Z4 DNA macrosatellite repeat array region leading to an
inappropriate gain of expression (function) of the D4Z4-embedded double
homeobox 4 (DUX4) gene.\2\ DUX4 is a transcription factor that kick
starts the embryonic genome during the 2- to 8-cell stage of
development.\3,4,5\ Ectopic expression of DUX4 in skeletal muscle leads
to muscle death. DUX4 is never expressed in 'healthy' muscle. FSHD has
had few clinical trials,\6,7,8,9,10\ and currently there is no cure or
therapeutic option available to patients. DUX4 requires and needs to
activate its direct transcriptional targets for DUX4-induced gene
aberration and muscle
toxicity.\11,12,13,14,15,16,17,18,19,20,21,22,23,24\ Blocking DUX4's
ability to activate its targets has profound therapeutic relevance.\25\
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\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/IItrial of MYO-029 in adult
subjects with muscular dystrophy. Ann. Neurol. 63, 561-71 (2008).
\11\ Rickard, A. M., Petek, L. M. & Miller, D. G. Endogenous DUX4
expression in FSHD myotubes is sufficient to cause cell death and
disrupts RNA splicing and cell migration pathways. Hum. Mol. Genet. 24,
5901-14 (2015).
\12\ Sandri, M. et al. Caspase 3 expression correlates with
skeletal muscle apoptosis in Duchenne and facioscapulo human muscular
dystrophy. A potential target for pharmacological treatment? J.
Neuropathol. Exp. Neurol. 60, 302-12 (2001).
\13\ Block, G. J. et al. Wnt/b-catenin signaling suppresses DUX4
expression and prevents apoptosis of FSHD muscle cells. Hum. Mol.
Genet. 22, 4661-72 (2013).
\14\ Statland, J. M. et al. Immunohistochemical Characterization of
Facioscapulohumeral Muscular Dystrophy Muscle Biopsies. J. Neuromuscul.
Dis. 2, 291-299 (2015).
\15\ Rickard, A. M., Petek, L. M. & Miller, D. G. Endogenous DUX4
expression in FSHD myotubes is sufficient to cause cell death and
disrupts RNA splicing and cell migration pathways. Hum. Mol. Genet. 24,
5901-14 (2015).
\16\ Kowaljow, V. et al. The DUX4 gene at the FSHD1A locus encodes
a pro-apoptotic protein. Neuromuscul. Disord. 17, 611-23 (2007).
\17\ Bosnakovski, D. et al. An isogenetic myoblast expression
screen identifies DUX4-mediated FSHD-associated molecular pathologies.
EMBO J. 27, 2766-79 (2008).
\18\ Wallace, L. M. et al. DUX4, a candidate gene for
facioscapulohumeral muscular dystrophy, causes p53-dependent myopathy
in vivo. Ann. Neurol. 69, 540-52 (2011).
\19\ Geng, L. N. et al. DUX4 activates germline genes,
retroelements, and immune mediators: implications for
facioscapulohumeral dystrophy. Dev. Cell 22, 38-51 (2012).
\20\ Yao, Z. et al. DUX4-induced gene expression is the major
molecular signature in FSHD skeletal muscle. Hum. Mol. Genet. 23, 5342-
52 (2014).
\21\ Homma, S., Beermann, M. Lou, Boyce, F. M. & Miller, J. B.
Expression of FSHD-related DUX4-FL alters proteostasis and induces TDP-
43 aggregation. Ann. Clin. Transl. Neurol. 2, 151-66 (2015).
\22\ Jagannathan, S. et al. Model systems of DUX4 expression
recapitulate the transcriptional profile of FSHD cells. Hum. Mol.
Genet. 25, 4419-4431 (2016).
\23\ Jones, T. I. et al. Facioscapulohumeral muscular dystrophy
family studies of DUX4 expression: evidence for disease modifiers and a
quantitative model of pathogenesis. Hum. Mol. Genet. 21, 4419-30
(2012).
\24\ Campbell AE, Shadle SC, Jagannathan S, Lim JW, Resnick R,
Tawil R, van der Maarel SM, Tapscott SJ. NuRD and CAF-1-mediated
silencing of the D4Z4 array is modulated by DUX4-induced MBD3L
proteins. Elife. 2018 Mar 13;7. pii: e31023. doi: 10.7554/eLife.31023.
. (2018)
\25\ Jagannathan S1,2,3, Ogata Y4, Gafken PR4, Tapscott SJ3,
Bradley RK1. Quantitative proteomics reveals key roles for post-
transcriptional gene regulation in the molecular pathology of
facioscapulohumeral muscular dystrophy. Elife. 2019 Jan 15;8. pii:
e41740. doi: 10.7554/eLife.41740. (2019).
---------------------------------------------------------------------------
NIH-supported basic research on muscle disease and muscular
dystrophy over the past 25 years has improved health outcomes. Small
molecule and genetically engineered therapies are now in the works for
FSHD and on the market for several neuromuscular diseases!
\26,27,28,29,30,31,32\ Each year, the non-profit, private and public
investment in research yields critical advances in FSHD. Together we
foster new treatments, diagnostics, and intervention strategies that
affect the health of our Nation. Meticulous efforts by FSHD
researchers/clinicians working with funding from FSH Society, the NIH
and others have brought forth significant advancements in epigenetic
diseases. FSHD is the only human disease known to be caused by the
contraction of repetitive ``junk'' DNA. The Society has funded
approximately $11 million in seed grants for research.
---------------------------------------------------------------------------
\26\ Himeda CL, Jones, et al. CRISPR/dCas9-mediated Transcriptional
Inhibition Ameliorates the Epigenetic Dysregulation at D4Z4 and
Represses DUX4-fl in FSH Muscular Dystrophy. Mol Ther. 2016
Mar;24(3):527-35. epub 2015 Nov 3. (2016).
\27\ Chen JC, King OD, Zhang Y, et al. Morpholino-mediated
Knockdown of DUX4 Toward Facioscapulohumeral Muscular Dystrophy
Therapeutics. Molecular Therapy. 2016;24(8):1405-1411. doi:10.1038/
mt.2016.1118. (2016).
\28\ Himeda CL, Jones TI, Virbasius CM, Zhu LJ, Green MR, Jones PL.
Identification of Epigenetic Regulators of DUX4-fl for Targeted Therapy
of Facioscapulohumeral Muscular Dystrophy. Mol Ther. 2018 Jul
5;26(7):1797-1807. doi: 10.1016/j.ymthe.2018.04.019. Epub 2018 Apr 26.
(2018).
\29\ Giesige CR, Wallace LM, Heller KN, Eidahl JO, Saad NY, Fowler
AM, Pyne NK, Al-Kharsan M, Rashnonejad A, Chermahini GA, Domire JS,
Mukweyi D, Garwick-Coppens SE, Guckes SM, McLaughlin KJ, Meyer K,
Rodino-Klapac LR, Harper SQ. AAV-mediated follistatin gene therapy
improves functional outcomes in the TIC-DUX4 mouse model of FSHD. JCI
Insight. 2018 Nov 15;3(22). pii: 123538. doi: 10.1172/
jci.insight.123538. (2018).
\30\ Lee JK, Bosnakovski D, Toso EA, Dinh T, Banerjee S, Bohl TE,
Shi K, Orellana K, Kyba M, Aihara H. Crystal Structure of the Double
Homeodomain of DUX4 in Complex with DNA. Cell Rep. 2018 Dec
11;25(11):2955-2962.e3. doi: 10.1016/j.celrep.2018.11.060. (2018).
\31\ Marsollier AC, Joubert R, Mariot V, Dumonceaux J. Targeting
the Polyadenylation Signal of Pre-mRNA: A New Gene Silencing Approach
for Facioscapulohumeral Dystrophy. Int J Mol Sci. 2018 May 3;19(5).
pii: E1347. doi: 10.3390/ijms19051347. Review. (2018).
\32\ Dion C, Roche S, Laberthonniere C, Broucqsault N, Mariot V,
Xue S, Gurzau AD, Nowak A, Gordon CT, Gaillard MC, El-Yazidi C, Thomas
M, Schlupp-Robaglia A, Missirian C, Malan V, Ratbi L, Sefiani A,
Wollnik B, Binetruy B, Salort Campana E, Attarian S, Bernard R, Nguyen
K, Amiel J, Dumonceaux J, Murphy JM, Dejardin J, Blewitt ME, Reversade
B, Robin JD, Magdinier F. SMCHD1 is involved in de novo methylation of
the DUX4-encoding D4Z4 macrosatellite. Nucleic Acids Res. 2019 Jan 30.
doi: 10.1093/nar/gkz005. [Epub ahead of print] (2019).
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Let me now turn your attention to how together we can contain
healthcare costs and improve outcomes via three initiatives: the FSH
Society Industry Collaborative Workshop (hereafter called 'FSHS NIH/FDA
Collaborative'), the NIH supported FSH Society annual International
Research Congress (hereafter called 'FSHS NIH IRC') and the NIH Action
Plan for the Muscular Dystrophies (hereafter called 'DHHS NIH MD Plan')
(See https://mdcc.nih.gov/Action_Plan).
On March 12, 2019, in Silver Spring, the FSHS NIH/FDA Collaborative
assembled 10 academic thought leaders, 17 industry representatives (8
companies), 5 NIH officers and scientists (EP/IP: NCATS, NIAMS, NINDS),
6 FDA scientists and regulators (CDER, CBER, DNP), and 9 patient
advocates and organizations to discuss clinical trial readiness and
accelerated approval process for therapies. We assessed disease
tractability in four directions: natural history,\33,34\
pharmacodynamic biomarkers,\35,36\ imaging biomarkers,\37,38,39\ and
clinical trial design/readiness.\40,41,42\ A journal publication/
manuscript (in process) will detail roadblocks that need rapid
mitigation in seven areas: diagnostics, molecular biomarkers, imaging
biomarkers, functional outcome measures, patient reported outcomes,
biorepository and animal models.
---------------------------------------------------------------------------
\33\ 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.
\34\ Statland JM, Donlin-Smith CM, Tapscott SJ, Lemmers RJ, van der
Maarel SM, Tawil R. Milder phenotype in facioscapulohumeral dystrophy
with 7-10 residual D4Z4 repeats.Neurology. 2015 Dec 15;85(24):2147-50.
doi: 10.1212/WNL.0000000000002217. Epub 2015 Nov 11.
\35\ Statland JM, McDermott MP, Heatwole C, Martens WB, Pandya S,
van der Kooi EL, Kissel JT, Wagner KR, Tawil R. Reevaluating measures
of disease progression in facioscapulohumeral muscular dystrophy.
Neuromuscul Disord. 2013 Apr;23(4):306-12. doi: 10.1016/
j.nmd.2013.01.008. Epub 2013 Feb 11.
\36\ Yao Z, Snider L, Balog J, Lemmers RJ, Van Der Maarel SM, Tawil
R, Tapscott SJ. DUX4-induced gene expression is the major molecular
signature in FSHD skeletal muscle. Hum Mol Genet. 2014 Oct
15;23(20):5342-52. doi: 10.1093/hmg/ddu251. Epub 2014 May 26.
\37\ Wang LH, Friedman SD, Shaw D, Snider L, Wong CJ, Budech CB,
Poliachik SL, Gove NE, Lewis LM, Campbell AE, Lemmers RJFL, Maarel SM,
Tapscott SJ, Tawil RN. MRI-informed muscle biopsies correlate MRI with
pathology and DUX4 target gene expression in FSHD. Hum Mol Genet. 2019
Feb 1;28(3):476-486. doi: 10.1093/hmg/ddy364.
\38\ Dahlqvist JR, Andersen G, Khawajazada T, Vissing C, Thomsen C,
Vissing J. J Relationship between muscle inflammation and fat
replacement assessed by MRI in facioscapulohumeral muscular dystrophy.
Neurol. 2019 Feb 18. doi: 10.1007/s00415-019-09242-y. [Epub ahead of
print]
\39\ Wang LH, Friedman SD, Shaw D, Snider L, Wong CJ, Budech CB,
Poliachik SL, Gove NE, Lewis LM, Campbell AE, Lemmers RJFL, Maarel SM,
Tapscott SJ, Tawil RN. MRI-informed muscle biopsies correlate MRI with
pathology and DUX4 target gene expression in FSHD. Hum Mol Genet. 2019
Feb 1;28(3):476-486. doi: 10.1093/hmg/ddy364
\40\ van der Kooi EL, Vogels OJ, van Asseldonk RJ, Lindeman E,
Hendriks JC, Wohlgemuth M, van der Maarel SM, Padberg GW. Strength
training and albuterol in facioscapulohumeral muscular dystrophy.
Neurology. 2004 Aug 24;63(4):702-8.
\41\ Voet N, Bleijenberg G, Hendriks J, de Groot I, Padberg G, van
Engelen B, Geurts A. Both aerobic exercise and cognitive-behavioral
therapy reduce chronic fatigue in FSHD: an RCT. Neurology. 2014 Nov
18;83(21):1914-22. doi: 10.1212/WNL.0000000000001008. Epub 2014 Oct 22.
\42\ Wagner KR, Fleckenstein JL, Amato AA, Barohn RJ, Bushby K,
Escolar DM, Flanigan KM, Pestronk A, Tawil R, Wolfe GI, Eagle M,
Florence JM, King WM, Pandya S, Straub V, Juneau P, Meyers K, Csimma C,
Araujo T, Allen R, Parsons SA, Wozney JM, Lavallie ER, Mendell JR. A
phase I/IItrial of MYO-029 in adult subjects with muscular dystrophy.
Ann Neurol. 2008 May;63(5):561-71. doi: 10.1002/ana.21338.
---------------------------------------------------------------------------
In June 2018, over 135 researchers from around the world gathered
at the FSHS NIH IRC meeting, co-funded by the U.S. DHHS NIH, in Las
Vegas to present the latest data and discuss research strategies. The
FSHD scientific community listed 2019-2020 priorities as:
Table II. 2019 IRC Research Priorities (Source: https://
www.fshsociety.org/events/international-research-conference/for
full version)
1. Therapeutics
Therapeutics Trial Toolkit, including biological biomarkers,
imaging markers, and clinical outcome assessments; Non-DUX4-centric
therapies that ameliorate some of the major pathological drivers in
FSHD, and/or augment muscle repair;
2. Pathophysiology
Pathophysiology, such as the role of DUX4 in fibrosis, inflammatory
infiltrates, and fatty infiltration; temporal analysis of disease
models; and novel model systems;
3. Molecular Mechanisms
Molecular mechanisms of DUX4 pathology and function;
4. Genetics and Epigenetics
Genetics and epigenetics around harmonizing diagnostics, disease
continuum and genotyping, and understanding genetic modifiers and
drivers of genetic variability.
Last, but not least, this Subcommittee and Congress in partnership
with NIH, patients and scientists have made truly outstanding progress
in understanding and treating the nine major types of muscular
dystrophy through the Muscular Dystrophy Community Assistance, Research
and Education Amendments of 2001 (MD-CARE Act, Public Law 107-84). The
Federal advisory committee mandated by MD CARE Act, called the MDCC,
along with working groups of outside scientific experts in the field
assembled the '2015 NIH Action Plan for the Muscular Dystrophies.' It
was presented by the Director of NIH to Congress. It specifies 81
objectives, in six sections (mechanism, screening, treatments, trial
readiness, access to care, infrastructure including workforce) in need
of funding and further development.\43\ The genetics that give rise to
FSHD are so remarkable, NIH Director Dr. Francis Collins emphasized its
significance on the front page of the New York Times, saying ``If we
were thinking of a collection of the genome's greatest hits, this
[FSHD] would go on the list.'' \44\ We understand this Subcommittee
seeks evidence of translating research spending into tangible
improvement in health status and patient care. The FSHS NIH/FDA
Collaborative, 'FSHS NIH IRC' and the 'DHHS NIH MD Plan' demonstrate
the solid gains and show the rate of change in care.
---------------------------------------------------------------------------
\43\ 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).
\44\ 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.
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Honorable Chairman, these advances in scientific understanding and
epidemiological surveillance come at a significant cost. Since passing
the MD CARE Act in 2001, NIH funding for FSHD has been unbalanced given
the growth in discoveries and needs to be set right.
FSHD RESEARCH DOLLARS & FSHD AS A PERCENTAGE OF TOTAL NIH MUSCULAR DYSTROPHY FUNDING
[Dollars in millions]
--------------------------------------------------------------------------------------------------------------------------------------------------------
Fiscal Year 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019
--------------------------------------------------------------------------------------------------------------------------------------------------------
All MD ($ millions)........................... $47.2 $56 $83 $86 $75 $75 $76 $78 $77 $79 $81 $85ea $80e
FSHD ($ millions)............................. $3 $3 $5 $6 $6 $5 $5 $7 $8 $9 $12.8 $13.7a $17a
FSHD (percent total MD)....................... 5% 5% 6% 7% 8% 7% 7% 9% 10% 11% 16% 16% 21%
--------------------------------------------------------------------------------------------------------------------------------------------------------
Sources: NIH/OD Budget Office & NIH OCPL & NIH RePORT RCDC (e=estimate, a=actual)
The NIH is the principal worldwide source of funding of research on
FSHD. Currently active projects are $17.037 million fiscal year 2019
(actual), a portion of the estimated $80 million spent on all muscular
dystrophies. fiscal year 2019 projects cover 1 F31, 1 K22, 1 K23, 13
R01, 1 R13, 4 R21, 1 P01, 4 P50, 3 U01, 1 ZIC grants. There are 30
active projects NIH-wide totaling $17.037 million as of March 21, 2019,
versus 28 active projects NIH-wide totaling $13.654 million as of April
18, 2018; and 28 active projects NIH-wide totaling $12.751 million as
of March 3, 2017. (source: NIH Research Portfolio Online Reporting
Tools (RePORT) keyword 'FSHD or facioscapulohumeral or landouzy-
dejerine').
Without research on muscle disease, supported by the FSHD patient-
advocacy groups in concert with the NIH biomedical research funding--
families with FSHD would be living shorter, less productive, and far
less hopeful lives. Nearly 41,000 Americans have FSHD, a disease that
can cause damage to skeletal muscle, hearing, vision, breathing and
lead to death.
What we need. Viewing at the current portfolio alongside the areas
in need of bolstering in FSHD the NIH needs to fast expand its
portfolio. Specifically, NIH needs to increase funding by adding R01
and R21 style grants in areas outlined by hundreds of experts in the
FSHS NIH/FDA Collaborative, the FSHS NIH IRC and the DHHS NIH MD Plan.
The engine of Federal research runs on the basic building blocks of
workforce training, exploratory/developmental research grants (parent
R21) and research project grants (parent R01). NIH can issue targeted
funding announcements covering FSHD. A request for applications (RFA)
on FSHD will yield results. These efforts will help convey to FSHD
patients and allied researchers that NIH encourages more grant
applications coming through its front door.
We request for fiscal year 2020, a doubling of the NIH FSHD
research portfolio to $40 million. We are very appreciative of the slow
but steady year-to-year increases and thank NIH and Congress. At this
moment in time, FSHD needs an infusion of NIH grants both submitted and
funded--investments in centers, collaborative research grants--and,
most importantly, a rapid ramp up of basic/exploratory, preclinical and
therapeutic research awards along with moderate expansion of post-
doctoral and clinical training fellowships. FSHD research calls for and
needs this additional funding in order to succeed. Honrable Chairman,
thank you again for your help and efforts.
[This statement was submitted by Daniel Paul Perez, Co-founder, FSH
Society.]
______
Prepared Statement of the GBS|CIDP Foundation International
summary of recommendations for fiscal year 2020
_______________________________________________________________________
--Provide $41.6 billion for the National Institutes of Health (NIH)
and proportional increases across its Institutes and Centers
--Continue expanding GBS research supported by NIH with proportional
funding increases for the National Institute of Neurological
Disorders and Stroke (NINDS), and the National Institute of
Allergy and Infectious Diseases (NIAID)
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray and distinguished members of
the Subcommittee, thank you for your time and your consideration of the
priorities of the community of individuals impacted by Guillain-Barre
Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy
(CIDP), and related conditions as you work to craft the fiscal year
2020 L-HHS Appropriations Bill.
about gbs, cidp, variants, and related conditions
Guillain-Barre Syndrome
Guillain-Barre Syndrome (GBS) is an inflammatory disorder of the
peripheral nerves outside the brain and spinal cord. GBS is
characterized by the rapid onset of numbness, weakness, and often
paralysis of the legs, arms, breathing muscles, and face. Paralysis is
ascending, meaning that it travels up the limbs from fingers and toes
towards the torso. Loss of reflexes, such as the knee jerk, are usually
found. Usually, a new case of GBS is admitted to ICU (Intensive Care)
to monitor breathing and other body functions until the disease is
stabilized. Plasma exchange (a blood ``cleansing'' procedure) and high
dose intravenous immune globulins are often helpful to shorten the
course of GBS. The acute phase of GBS typically varies in length from a
few days to months. Patient care involves the coordinated efforts of a
team such as a neurologist, physiatrist (rehabilitation physician),
internist, family physician, physical therapist, occupational
therapist, social worker, nurse, and psychologist or psychiatrist.
Recovery may occur over 6 months to 2 years or longer. A particularly
frustrating consequence of GBS is long-term recurrences of fatigue and/
or exhaustion as well as abnormal sensations including pain and muscle
aches.
chronic inflammatory demyelinating polyneuropathy
CIDP is a rare disorder of the peripheral nerves characterized by
gradually increasing weakness of the legs and, to a lesser extent, the
arms. It is the gradual onset as well as the chronic nature of CIDP
that differentiates it from GBS. Like GBS, CIDP is caused by damage to
the covering of the nerves, called myelin. It can start at any age and
in both genders. Weakness occurs over two or more months. Unlike GBS,
CIDP is chronic, with symptoms constantly waxing and waning. Left
untreated, 30 percent of CIDP patients will progress to wheelchair
dependence. Early recognition and treatment can avoid a significant
amount of disability.
Post-treatment life depends on whether the disease was caught early
enough to benefit from treatment options. The gradual onset of CIDP can
delay diagnosis by several months or even years, resulting in
significant nerve damage that may take several courses of treatment
before benefits are seen. The chronic nature of CIDP differentiates
long-term care from GBS patients. Adjustments inside the home may need
to be made to facilitate a return to normal life.
about the foundation
The Foundation's vision is that every person afflicted with GBS,
CIDP, or variants has convenient access to early and accurate
diagnosis, appropriate and affordable treatments, and dependable
support services.
The Foundation's mission is to improve the quality of life for
individuals and families across America affected by GBS, CIDP, and
their variants by:
--Providing a network for all patients, their caregivers and families
so that GBS or CIDP patients can depend on the Foundation for
support, and reliable up-to-date information.
--Providing public and professional educational programs worldwide
designed to heighten awareness and improve the understanding
and treatment of GBS, CIDP and variants.
--Expanding the Foundation's role in sponsoring research and engaging
in patient advocacy.
centers for disease control and prevention
CDC and the National Center for Chronic Disease Prevention and
Health Promotion (NCCDPHP) have resources that could be brought to bear
to improve public awareness and recognition of CIDP and related
conditions. In order to initiate new, potentially cost-saving programs,
CDC requires meaningful funding increases to support crucial
activities. CIDP is a progressive condition in which patients can end
up almost completely paralyzed and on a ventilator. The key to limiting
serious health impacts is an early and accurate diagnosis. The time it
takes for a CIDP patient to begin therapy is linked to the seriousness
of the health impacts. An early diagnosis can mean the difference
between a brief or extended hospital stay. For the Federal healthcare
system, there is an economic incentive to ensure early and accurate
diagnosis as longer hospitalizations equate to higher costs.
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 a State of the Science
Conference between NIAID, NINDS and the GBS|CIDP community. This
conference would allow intramural and extramural researchers to develop
a roadmap that would lead research into these conditions into the next
decade, and encourage younger investigators to apply for grants that
lead to sustained research activities. We are continuing to have
conversations with the leadership of both institutes to facilitate a
robust agenda and list of goals for the Conference. In our meetings
with the leadership, we also spoke about the possibilities of cross-
institute work between NINDS and NIAID to expand the research and
understanding of the link between Zika and GBS. While such a conference
would not require additional appropriations, the Foundation urges you
to provide NIH with meaningful funding increases to facilitate growth
in the GBS, CIDP, and related conditions research portfolio.
patient access
As we have seen from communities that currently have access to home
infusion, such as primary immunodeficiency diseases, the ability to
choose the home as the preferred site of care has tremendous benefit in
terms of health outcomes and overall convenience for patients.
Individuals with CIDP and MMN often face mobility issues as limbs
suffer nerve damage. Traveling to receive an infusion presents a
tremendous hardship to many patients and their families. This hardship
greatly affects rural patients who have to travel hundreds of miles to
major cities in order to receive treatment, which can be both
inconvenient and costly. The Foundation has seen that when there are
obstacles to receiving regular infusions, patients tend to skip
scheduled infusions, which leads to progressive disability. Many CIDP
and MMN patients have access to IVIG home infusion through private
insurance, which allows them to lead productive and active lives. When
these individuals age on to Medicare, they can face disruption in their
routine and suboptimal circumstances when managing their condition.
Further, because the body's immune system is depressed at the end of an
infusion cycle, CIDP and MMN patients face an elevated risk of
contracting illness from visiting well-traveled sites of care for
infusions. Most importantly, patients and physicians should have the
authority to choose their preferred site of care. We hope that members
of this subcommittee and Congress as a whole support legislation that
will grant our patients this important access.
Patient Perspective
The Foundation was founded nearly 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 $41.6 billion to the NIH with proportional increases to NIAID
and NINDS to continue the potentially lifesaving work being done for
our community, and ask for Congressional support of our initiative to
improve access to life-saving treatments.
[This statement was submitted by Lisa Butler, Executive Director,
GBS|CIDP Foundation International.]
______
Prepared Statement of Geriatrics Workforce Enhancement Program and the
Geriatric Academic Career Award Program
As the Co-Project Directors of the Gateway Geriatric Workforce
Enhancement Program at Saint Louis University School of Medicine, we
are pleased to submit this joint statement for the record recommending
appropriations of at least $51 million in fiscal year 2019 to support
geriatrics workforce training under the Geriatrics Workforce
Enhancement Program (GWEP) and the Geriatric Academic Career Award
(GACA) program administered by the Health Resources and Services
Administration (HRSA). We thank you for your past support.
The most resent Notice of Funding Opportunity (NOFO) for geriatrics
will fund 47 GWEP sites and one of their primary responsibilities is to
educate primary care providers in caring for older adults.
Unfortunately, each GWEP will receive about $100,000 less for their
programs than the first round of grants provided in 2015. Our funding
request would allow for additional GWEP sites in rural and underserved
communities and for supplemental payments for GWEPs that provide
additional training for caregivers, including family caregivers. This
request would also include at least the cost of the recent NOFO for 26
GACA Program awards. These two geriatrics programs were funded at $40.7
million in fiscal year 2019.
In fiscal year 2015, HRSA combined the geriatric education programs
in Titles VII and VIII of the Public Health Service Act, including the
Geriatric Academic Career Award, as well as portions of the Alzheimer's
Disease Prevention, Education, and Outreach Program to establish the
Geriatrics Workforce Enhancement Program (GWEP). The GWEP is now the
only Federal program designed to develop a healthcare workforce
specifically trained to care for the complex health needs of older
Americans with the most effective and efficient methods, providing
higher quality care and saving valuable resources by reducing
unnecessary costs. As you are aware, the number of Americans ages 65
and older will double from 46 million today to over 98 million by 2060,
creating an imperative for policymakers to enhance the education of
health professionals to improve care of older persons and, thus
decrease costs of care.
Proven results from activities under the GWEP and its predecessor
programs include an important increase in the number of teaching
faculty with geriatrics expertise in a variety of disciplines, plus
thousands of healthcare providers and family caregivers better prepared
to support older Americans with complex chronic conditions. We
recognize that the Subcommittee faces complex decisions in a
constrained budget environment, but we believe a top priority should be
a commitment to geriatric education programs that help the Nation's
health workforce better serve the rapidly increasing number of older
persons.
The Nation faces a shortage of geriatrics health professionals and
direct service workers. There are not enough geriatricians, advanced
practice nurses, and other health professionals with the knowledge,
skills, and training in geriatrics to meet the needs of our rapidly
growing population of older adults and to support their family
caregivers. Too often, the result is expensive walk-in care and
inappropriate return to hospital within thirty days of discharge. We
believe that funding for GWEP-based geriatric education supports a
sustainable future for the Nation's healthcare and Social Security
systems by ensuring that (a) healthcare specialists trained in
geriatric care do not become an expensive resource from which only a
select few are able to benefit and (b) direct service workers and
family caregivers are prepared to support a lower cost, independent
lifestyle for community residing elders.
In recent years, GWEPs have continued the impressive work of the
Geriatric Education Centers. Approximately half of the GWEPs provide
education for areas that are more than 50 percent rural. In the 2017-
2018 academic year, GWEPs provided gerontological education to more
than 49,000 fellows and students. Continuing education for the current
workforce is another critical part of the program's success with
212,444 faculty and practicing professionals participated in 1,564
unique continuing education courses offered by GWEP grantees during
this period. Saint Louis University and other GWEPs are partnering with
federally Qualified Health Centers to provide geriatric primary care
education and didactic training. GWEPs create opportunities for
healthcare providers in underserved and remote areas of the country to
consult with top experts in geriatric care through Interactive
Televideo (ITV), interactive teleconsults, and synchronous webcasts,
and make available thousands of hours of online geriatric education
programs.
The Gateway Geriatric Education Center at Saint Louis University
has provided education to 25,611 health professionals and 5,904 members
of the public since 2016. These health professionals have provided
screenings for geriatric problems such as frailty, sarcopenia (muscle
weakness), falls, and dementia to 9,280 older adults in all six
Congressional districts in Missouri. More than 80 percent of this
trainings and evaluation of older persons were in primary care settings
and medically underserved communities. Developed specifically for the
GWEP, the Rapid Geriatric Assessment has been computerized in multiple
health systems, including Perry County Memorial Hospital in Perryville,
Missouri, a critical access hospital in rural Perry County, and
CARESTLHealth, a federally Qualified Health Center in north St. Louis
city, Missouri. In Perry County, over 25 percent of the older adults in
the county have been screened using this assessment process. Our
screenings thus far, have identified 25.4 percent with dementia and
31.9 percent with falls. Early intervention for these conditions can
decrease medical costs. Upon identifying concerns in any of the
assessment areas, older patients are referred for other GWEP-initiated
services, to include: Cognitive Stimulation Therapy--a non-
pharmacologic intervention for persons with dementia or Exercise and
Strengthening programming. In addition, our GWEP has provided education
through in-person and on-line continuing education, through daily
tweets on Twitter (@meddocslu)--828, to date--and with 102 postings to
LinkedIn and Facebook. Our GWEP also co-produced a regional prime time
television program on aging which was viewed by 340,739 persons. The
YouTube site has had 103,200 views.
Highlights from other GWEPS include:
--The Dartmouth GWEP is disseminating education across the Nation in
the highly successful Geriatric Interdisciplinary Team Training
program.
--The South Central Foundation GWEP is providing support for
improving home-based care for the native community throughout
the State Alaska.
--In rural eastern North Carolina, the East Carolina University GWEP
is disseminating training on caring for older members of the
farming, fishing, and lumber industries.
These are some of the highlights of the contributions made by only
four GWEPs. Obviously, the GWEPs are playing a major role in improving
healthcare for older adults in the United States. Multiply this by 44
(the number of existing GWEPs) and you can begin to visualize the scope
and impact of this program across the Nation. It is important to note
that every GWEP is focused on meeting the needs of rural and/or
underserved populations; many serve predominantly people of color and
those who are economically challenged.
GWEP awardees have received expanded authorization to provide
family caregivers and direct service workers with instruction on
prominent issues in the care of older adults, such as Alzheimer's
Disease and other dementias, palliative care, self-care, chronic
disease self-management, falls, and maintaining independence, among
others. In Missouri, we have developed Cognitive Stimulation Therapy
(CST) aimed at enhancing functioning in persons with moderate
Alzheimer's disease. We have trained over 1200 persons to deliver this
intervention and this has led to over 500 persons with dementia
participating in this effective intervention which our research has
shown to improve cognition. Our GWEP has recently been designated by
the founders of CST as the North American CST Training Center.
HRSA estimates that 52,352 paid and family caregivers will
participate in GWEP training programs over the current grant period.
For example, the GWEP at Saint Louis University is partnering with
several Area Agencies on Aging, the local Alzheimer's Association, a
rural hospital, a rural osteopathic school, the regional Area Health
Education Centers, and dementia-focused community care agencies to
train staff and family caregivers in assessing and supporting them
through the caregiving process. The 2016 National Academies of
Sciences, Engineering, and Medicine (NASEM) report Families Caring for
an Aging America acknowledged that training must go beyond the
healthcare professions and support family caregivers. This will improve
the quality of health outcomes while saving valuable resources in the
healthcare system.
In summary, GWEPs have improved the supply, distribution,
diversity, capabilities, and quality of healthcare professionals who
care for our Nation's growing older adult population, including the
underserved and minorities. They train physicians, nurses, social
workers, dentists, mental health professionals, pharmacists, and
caregivers. In some States, the GWEP is offering training to first
responders to keep elders safe in their communities. Some of the
professionals trained through GWEPs will become academicians in
geriatric medicine, dentistry, psychiatry, nursing, and allied health
professions, thereby giving additional cohorts of professionals the
skills they need to properly serve older Americans. Furthermore, GWEPs
create and deliver community-based programs that provide patients,
families, and caregivers with the skills to care for older adults and
improve health outcomes, including Alzheimer's disease education. The
GWEPs are serving as change agents and helping to transform a
fragmented and outmoded system.
We ask for your continued support for geriatric programs to
adequately prepare the next generation of health professionals and care
providers for the rapidly changing and emerging needs of the growing
and aging population.
On behalf of NAGE and those who have benefitted in Missouri and
from our colleagues around the country, thank you for your thoughtful
consideration of our request for funding for GWEPs and GACAs in fiscal
year 2019. NAGE is a non-profit membership organization representing
GWEPs, Geriatric Education Centers, Centers on Aging, and other
programs that provide education and training to healthcare
professionals and others in geriatrics and gerontology.
[This statement was submitted by John E. Morley, MB, BCh, and Marla
Berg-Weger, PhD., LCSW, Co-Project Director, Gateway Geriatric
Workforce
Enhancement Program.]
______
Prepared Statement of the Global Health Council
Global Health Council (GHC), the leading alliance of non-profits,
businesses, and universities, dedicated to saving lives and improving
the health of people worldwide, thanks the Subcommittee for the
opportunity to submit this testimony in support for the Center for
Global Health within the Centers for Disease Control and Prevention
(CDC).
The recent Ebola outbreaks in West Africa and Zika highlighted the
important work that the Center for Global Health (CGH) at CDC does to
protect the health of millions around the world, but also Americans
here at home. Every year, CGH is on the frontlines of investigating and
responding to disease outbreaks. To that end, Global Health Council
recommends at a minimum fiscal year 2019 funding levels for CGH but
recognizes that $642 million is needed to ensure CGH has the needed
resources to address current and future public health threats. In
addition, Global Health Council recommends $208 million for CGH's
Division of Global Health Protection, which implements global health
security programs at CDC.
CDC serves a critical role in gathering and sharing public health
data and evidence, and one of its greatest assets is the level of
expertise it brings to both the domestic and global health spheres. In
the area of global health, CDC leads efforts in global disease
surveillance, capacity building, and research in the development of new
health technologies and tools. Its work has resulted in significant
advances against a number of diseases, including the eradication of
smallpox.
The Center for Global Health protects the health of Americans by
monitoring 24/7 disease outbreaks around the world. CGH works in over
60 countries and partners with ministries of health, international
organizations, and other global health partners not only to monitor and
control disease outbreaks, but also to foster local ownership and
strengthen countries' capacity to prevent, detect, and respond to such
events.
In addition, CGH is home to the Global HIV/AIDS, Global
Immunization, Parasitic Disease and Malaria, and Global Public Health
Capacity Development programs. These programs position CGH as a leader
in global immunization, disease eradication, and public health capacity
building, and are critical to CDC's global health mission. Through
these programs, CGH works to strengthen foreign government's research
and laboratory infrastructure, train new health professionals, foster
resilient health systems equipped with clean water and sanitation
facilities, and conduct research to develop new technologies to combat
diseases around the world.
The Division of Global Health Protection within CGH leads the
administration's engagement on the Global Health Security Agenda
(GHSA), an international initiative to help countries build their
capacities to detect and respond to infectious disease outbreaks. In
this effort, CDC collaborates with national governments, international
organizations, and civil society to prevent and reduce the likelihood
of disease outbreaks, detect potential and emerging threats, and
coordinate a rapid, effective response. With funding from the Emergency
Ebola Supplemental, which has bolstered funding for these activities,
set to expire at the end of fiscal year 2019, it is critical that the
annual appropriations for the Division of Global Health Protection is
increased to ensure this work continues.
Since the 2014 Ebola outbreak in West Africa, CDC has invested in
training epidemiologists, upgrading laboratories, and stockpiling drugs
and equipment. These investments have helped countries like Liberia
(ground-zero for Ebola in 2014) respond to an outbreak in less than 24
hours, as opposed to 90 days. Cameroon has shortened its response time
to cholera outbreaks from 8 weeks to just 24 hours. The ongoing Ebola
crisis in the Democratic Republic of the Congo (DRC), now the second
largest outbreak in history, demonstrates the importance of continued
funding for global health security activities. Making investments today
in building capacity helps to contain and halt outbreaks at their
origin, preventing an outbreak from becoming a global pandemic, thus
reducing the funding needed for an emergency response.
Funding for CGH ensures that we have the right tools,
infrastructure, staff, and systems in place to prevent future outbreaks
from spiraling out of control, and we cannot afford to retreat on these
investments. Sustained funding will ensure that CGH continues to build
strong health systems that ensure security and improvement of health of
those around the world, as well as Americans.
We encourage you to maintain robust investments in global health
programs at CDC, while also maintaining funding for other critical
humanitarian and development programs that enable the United States to
reach its goal of ending extreme poverty and creating a more stable,
prosperous world.
Global Health Council thanks the Subcommittee for the opportunity
to submit written testimony in support of the Center for Global Health
at CDC. For more information on U.S. investments in global health,
visit http://ghbb.globalhealth.org.
[This statement was submitted by Loyce Pace, MPH, President and
Executive
Director, Global Health Council.]
______
Prepared Statement of the Global Health Technologies Coalition
On behalf of the Global Health Technologies Coalition (GHTC), a
group of more than 30 nonprofit organizations, academic institutions,
and aligned businesses advancing policies to accelerate the creation of
new drugs, vaccines, diagnostics, and other tools that bring healthy
lives within reach for all people, I am providing testimony on fiscal
year 2020 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). We
appreciate your leadership in promoting the value of global health,
particularly continued research and development (R&D) to advance new
drugs, vaccines, diagnostics, and other tools for longstanding and
emerging health challenges.
To achieve this goal, we respectfully request maintaining robust
funding for NIH, particularly the National Institute for Allergy and
Infectious Diseases and the Fogarty International Center, providing
funding to match CDC's increased responsibilities in global health and
global health security--at minimum, funding of $513.62 million for the
CDC Center for Global Health (CGH) and $644.62 million for the CDC
National Center for Emerging Zoonotic and Infectious Diseases (NCEZID),
in line with the House bill--and supporting funding for BARDA's
critical work in emerging infectious diseases.
We also strongly urge the Subcommittee to continue its established
support for global health R&D by urging leaders at the NIH, CDC, the
Food and Drug Administration, and other entities within the U.S.
Department of Health and Human Services, like the Office of Global
Affairs, BARDA, and the NIH Fogarty International Center, to join
leaders of other U.S. agencies to develop a cross-government global
health R&D strategy to ensure that U.S. investments in global health
research are efficient, coordinated, and streamlined.
GHTC members strongly believe that sustainable investment in R&D
for a broad range of neglected diseases and health conditions is
critical to tackling both longstanding and emerging global health
challenges that impact people around the world and in the United
States. My testimony reflects the needs expressed by our members, which
work with a wide variety of partners in nearly one hundred countries to
develop new and improved technologies for the world's most pressing
health issues.
Critical Need For New Global Health Tools.--While we have made
tremendous gains in global health over the past fifteen years, millions
of people around the world are still threatened by HIV/AIDS,
tuberculosis (TB), malaria, and other neglected diseases and
conditions. In 2107, TB killed 1.3 million people, surpassing deaths
from HIV/AIDS. 1.8 million people were newly diagnosed with HIV. Nearly
half of the global population remains at risk for malaria and drug
resistant strains are growing. Maternal mortality is 19 times greater
in under-resourced regions than developed countries. One out of every
13 children in Sub-Saharan Africa dies before the age of 5, often from
vaccine-preventable and other communicable diseases. These figures
highlight the tremendous global health challenges that remain and the
need for sustained investment in global health R&D to deliver new tools
to combat endemic and emerging threats.
New tools and technologies are critical, both to address unmet
global health needs and address challenges of drug resistance, outdated
and toxic treatments, and difficulty administering current health
technologies in poor, remote, and unstable settings. As seen with
recent outbreaks of Ebola and Zika, we simply do not have all the tools
needed to prevent, diagnose, and treat many neglected diseases--yet the
emerging evidence of the impact of an experimental Ebola vaccine
candidate currently being deployed in the epidemic in the Democratic
Republic of the Congo, developed in part with funding from the U.S.
Government, demonstrates the power of having the right tool at the
right time to respond to a health emergency. It is critical to invest
in the development of next generation tools to fight existing and
emerging disease threats and have tools ready to go when we need them.
research and u.s. global health efforts
The United States is at the forefront of innovation in global
health, with NIH, CDC, and BARDA leading much of our global health
research.
NIH.--The groundbreaking science conducted at the NIH has long
upheld U.S. leadership in medical research. Within the NIH, the
National Institute of Allergy and Infectious Diseases, the Office of
AIDS Research, and the Fogarty International Center all play critical
roles in developing new health technologies that save lives at home and
around the world. Recent activities have led to the creation of new
tools to combat neglected diseases, including vaccines for dengue and
trachoma, new drugs to treat malaria and TB, and multiple projects to
develop diagnostics, vaccines, and treatments for Ebola--including
supporting clinical trials for the rVSV-ZEBOV investigational Ebola
vaccine currently being deployed to counter the Ebola epidemic in the
Democratic Republic of the Congo. Leadership at NIH has long recognized
the vital role the agency plays in global health R&D and has named
global health as one of the agency's top five priorities.
We recognize and are grateful for Congress' work to bolster funding
for NIH, including through the 21st Century Cures Act. It remains
critical that support for NIH considers all pressing areas of
research--including research in neglected diseases. To deliver on the
remarkable progress being made across the institutes, it is vital that
we renew our commitment to health research and maintain steady support
for the NIH.
CDC.--The CDC also makes significant contributions to global health
research, particularly through CGH and NCEZID. CDC's ability to respond
to disease outbreaks, like recent episodes of Zika and Ebola, is
essential to protecting the health of citizens both at home and abroad,
and the work of its scientists is vital to advancing the development of
tools, technologies, and techniques to detect, prevent, and respond to
urgent public health threats. Important work at NCEZID includes the
development of innovative technologies to provide a rapid diagnostic
test for the Ebola virus, a new vaccine to improve rabies control, and
a new and more accurate diagnostic test for dengue virus. The center
also plays a leading role in the National Strategy for Combating
Antibiotic-Resistant Bacteria, to prevent, detect, and control
outbreaks of antibiotic resistant pathogens, such as drug-resistant TB.
Programs at CDC's CGH--including the Global HIV/AIDS, Global
Immunization, Parasitic Diseases and Malaria, Global Disease Detection
and Emergency Response, and Global Public Health Capacity Development
programs--have also yielded tremendous results in the development and
refinement of vaccines, drugs, microbicides, and other tools to combat
HIV/AIDS, TB, malaria, and neglected tropical diseases like
leishmaniasis and dengue fever. In addition, the CGH plays a critical
role in disease detection and response, working to monitor and respond
to outbreaks, develop new tools to help detection efforts, train
epidemiologists in high-burden regions, and build capacity of health
systems.
As global disease outbreaks have grown in frequency and intensity,
CDC's work in novel technology development and global health security
has only become more important. This includes the agency's efforts in
the Democratic Republic of Congo to quash that country's tenth outbreak
of Ebola, now the second largest Ebola outbreak in history, as well as
CDC's engagement with the international community on a coordinated
Global Health Security Agenda (GHSA). Unfortunately, most of CDC's
global health security activities have been supported by one-time
supplemental funding that expires in 2019, not by annual
appropriations. As these funds expire at the end of this fiscal year--
jeopardizing the agency's efforts to develop new tools, train
epidemiologists, buy equipment, upgrade labs, and stockpile drugs--GHTC
urges the Subcommittee to continue to support an increase to annual
appropriations for the Division of Global Health Protection (DGHP)
within the Center for Global Health to ensure these activities
continue. We also urge increased funding for the National Center for
Emerging and Zoonotic Infectious Diseases (NCEZID), which complements
DGHP's efforts globally with domestic preparedness efforts to ensure
Americans are protected at home and abroad. We urge the Senate to match
the increased support for these critical activities included in the
House fiscal year 2020 LHHS bill: at a minimum, funding of $513.62
million for CGH and $644.62 million for NCEZID.
BARDA.--BARDA plays an unmatched role in global health R&D by
providing an integrated, systematic approach to the development and
purchase of critical medical technologies for public health
emergencies. By leveraging unique contracting authorities and targeted
incentive mechanisms, BARDA partners with diverse stakeholders from
industry, academia, and nonprofits to bridge the ``valley of death''
between basic research and advanced-stage product development for
medical countermeasures--an area where more traditional U.S. Government
research enterprises do not operate.
With these unique assets, BARDA has played a vital role in the
development of urgently needed countermeasures for emerging infectious
diseases (EIDs) like Ebola and Zika, developing at least three Ebola
vaccine candidates, at least six diagnostics for Zika, and at least
five Zika vaccine candidates in under 2 years. To date, BARDA's work in
advancing tools to protect against the threat of EIDs has largely been
funded through emergency funding. To ensure the continuation of this
critical work and forward-looking investments, GHTC supports the
creation of a separate line item dedicated funding for EIDs within
BARDA.
Innovation as a smart economic choice: 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.
$0.89 cents of every U.S. dollar invested in global health R&D goes
directly to U.S.-based researchers. U.S. Government investment in
global health R&D between 2007 and 2015 generated an estimated 200,000
new jobs and $33 billion in economic growth. Furthermore, investments
in global health R&D today can help achieve significant cost-savings in
the future. New therapies to treat drug-resistant TB, for example, have
the potential to reduce the price of TB treatment by 90 percent and cut
health system costs significantly.
Now more than ever, Congress must make smart budget decisions.
Global health research that improves the lives of people around the
world--while at the same time supporting U.S. interests, creating jobs,
and spurring economic growth at home--is a win-win. On behalf of the
members of the GHTC, I would like to extend my gratitude to the
Subcommittee for the opportunity to submit written testimony for the
record.
[This statement was submitted by Jamie Bay Nishi, Director, Global
Health
Technologies Coalition.]
______
Prepared Statement of Head Start
Dear Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee, on behalf of the Head Start community, thank you for the
opportunity to submit written testimony regarding funding for Head
Start and Early Head Start (collectively referred to as ``Head Start'')
in fiscal year 2020. For more than 50 years, Head Start has provided
early learning opportunities for our country's most vulnerable children
and comprehensive supports to families that address long-term economic
stability and better health prospects, ultimately mitigating the
devastating impacts that poverty can have on the future success of
young children. As a community, we are grateful for the Subcommittee's
tradition of strong bipartisan support for Head Start and its
leadership on issues related to children and families. This
Subcommittee has been a tremendous advocate for Head Start, Early Head
Start, and other programs that give struggling young families and
single parents sustained, unmatched support, providing the chance for
children, like my grandchildren, not just to succeed in school but to
thrive in life. To build on these critical successes, the National Head
Start Association (NHSA) recommends $11,113,095,000 in Head Start
funding for fiscal year 2020.
At a time when the challenges our country faces are quickly
evolving, Head Start's mission to provide opportunities to our Nation's
most vulnerable children and families has remained steadfast. This has
been increasingly evident, especially as we grapple with the challenges
created by rising rates of substance use disorders in particular
communities across the country. For many families, like mine, at the
heart of the response to this crisis is Head Start, which has been
empowered by its unique relationships and its community-based approach
to addressing the current epidemic.
I have been involved in Head Start since 2014 and have since become
a Parent Ambassador and a Policy Council Chairperson for Head Start. I
currently serve on the Ohio Head Start Association's board as a Region
V Parent Representative and am a Parent Peer Supporter for Summit
County, Ohio. In addition, I am a Parent Representative and Vice
President for the Family and Children First Council of Summit County,
Ohio. However, all of these roles come second to my role as a stay-at-
home grandmother of two energetic, beautiful children: Dominic (age 6)
and Kennedy (age 5).
Life has a way of surprising us when we least expect it. Six years
ago, my husband and I were empty nesters and working full-time so that
in our 50s and beyond we could relax and enjoy the simplicities of
retired life. Then, when we were in the process of planning our dream
vacation to Ireland, Scotland, and England, our lives were changed
forever.
Both Dominic and Kennedy were born drug dependent and spent six
weeks in the Newborn Intensive Care Unit at Akron Children's Hospital.
While they suffered through withdrawals, their parents were nowhere to
be found. It became my husband's and my job to feed and comfort both
babies while they were shaking and crying, suffering from neonatal
abstinence syndrome (NAS). While we were aware of the situation, we
kept hoping that the children's births would trigger better behavior
from their parents. Unfortunately, drug addiction is a force more
powerful than many of us can imagine.
The first few years of their lives were full of traumatic
experiences that still affect them today. Sadly, the first year of
Dominic's life was spent day and night in a dark room, in a crib with
little or no physical contact of any kind. He has extreme learning
disabilities, sensory processing disorder, moderate autism, and most
recently a diagnosis of attention-deficit/hyperactivity disorder
(ADHD). He did not speak until he was 3 years old and many other
milestones, like crawling and walking, were also extremely delayed.
Both Dominic and Kennedy were physically abused by their father, as
well as physically and emotionally neglected by their mother, resulting
in a number of behavioral issues. In 2016, after years of back and
forth with the children's parents, my husband and I were given
permanent custody of both children.
My husband and I had no idea where to turn for help. That's when a
local non-profit recommended Head Start, and our lives began to change
drastically. With the love and support from Head Start staff, both
children who had been so isolated that they had no idea how to interact
with other children, now play freely with other kids, know their
alphabet, can count to fifty, and speak in full sentences. None of this
would have been possible without the support of the Head Start staff
who were able to give Dominic and Kennedy the specialized attention
they needed to overcome the numerous challenges they faced.
Unfortunately, stories like mine are all too common. While Head
Start continues to be at the forefront of supporting children and
families impacted by addiction, additional funding is needed to ensure
that children and families have access to the kind of assistance that
Head Start provided to our family.
In addition to a cost-of-living adjustment (COLA) of $191,000,000,
the fiscal year 2020 recommendation for Head Start calls for a
$900,000,000 increase in Quality Improvement Funds (QIF). QIFs are
designed to meet existing needs by providing programs with the
flexibility to address specific, dire local priorities, all with a goal
of improving program performance.
$155,000,000 of these funds would be dedicated to meeting a number
of local needs, including providing more classroom time to better
support working families, staff training, facility improvements, and
strengthening transportation safety. The remaining $745,000,000 of the
QIF request is intended for trauma-informed practices, giving Head
Start programs the ability to meet the increase in existing challenges
stemming from childhood trauma. This would include funding for
additional staff training, so that teachers--like Ms. Dancy who taught
my grandchildren--have the tools and knowledge they need to support all
children. Further, it would fund increased mental health consultations
and provide for additional staffing for preschool classrooms.
As the primary caregiver of two children with high needs, it is
abundantly clear that these funds are essential for Head Start programs
to provide the level of care that Dominic and Kennedy were fortunate
enough to receive. As their primary caretaker, I saw the difference
that Head Start made in my grandchildren's lives, and I can only hope
that every child in need is afforded the same opportunity for a happy
and healthy life.
I am forever thankful for Head Start's impact on Dominic and
Kennedy. Frankly, I am not sure where they would be, intellectually or
emotionally, without the dedication of Head Start teachers and staff.
When we joined Head Start, we became part of a family. Despite my
grandchildren now being in kindergarten, their Head Start teachers
still call periodically to check on them. It is due to their excellent
teaching ability and caring love and support that our grandchildren
received a ``Head Start'' in life and are still thriving because of it.
No child asks to be put in a situation like what Dominic and
Kennedy went through. Every day my heart breaks because their parents
are missing so many new and special moments, like a first haircut,
first day of school, or my favorite: a goodnight kiss and hug and my
granddaughter saying, ``I'll see you in the morning for coffee,
Grandma.'' We love them more than life itself and will continue to do
everything in our power to give them the best childhood and life we can
provide. And, it's because of the Head Start program and the staff's
genuine care for the children they serve that I am able to share our
journey and help other families who may benefit from Head Start.
Head Start is not simply a preschool program, but a stable, caring
environment where you can truly become part of a family. Today, I ask
the Subcommittee to increase funding to this remarkable program because
there are so many children out there that deserve the same chance that
our grandchildren have received. Thank you very much for your time and
consideration.
[This statement was submitting by Andrea Fleming, Head Start
Grandparent Representative.]
______
Prepared Statement of the Health Professions and Nursing Education
Coalition
The Health Professions and Nursing Education Coalition (HPNEC) is
an alliance of nearly 70 national organizations representing schools,
students, health professionals, and communities dedicated to ensuring
that the healthcare workforce is trained to meet the needs of our
diverse population. Together, the members of HPNEC advocate for
adequate and continued support for the health professions and nursing
workforce development programs authorized under Titles VII and VIII of
the Public Health Service Act and administered by the Health Resources
and Services Administration (HRSA). For fiscal year 2020, HPNEC
encourages the subcommittee to adopt at least $690 million for current
HRSA Titles VII and VIII programs.
HRSA's Title VII health professions and Title VIII nursing
workforce development programs are structured to allow grantees to test
educational innovations, respond to changing delivery systems and
models of care, and address timely health threats in their communities.
Titles VII and VIII programs emphasize interprofessional education and
training, by bringing together knowledge and skills across disciplines
to provide effective, efficient and coordinated care. Through
scholarships, loan repayment programs, grants and contracts to academic
institutions, students and non-profit organizations, HRSA's workforce
development programs fill the gaps in the supply of health
professionals not met by traditional market forces.
Our Nation is becoming increasingly diverse and faces a rapidly
growing and aging population. Now more than ever support is needed for
Title VII and Title VIII programs that improve the supply,
distribution, and diversity of the workforce--to ensure health
professionals are prepared to address the healthcare challenges of
today and the future.
Primary Care Workforce.--The Primary Care Medicine Programs expand
the primary care workforce, including general pediatrics, general
internal medicine, family medicine, and physician assistants through
the following programs: Primary Care Training and Enhancement (PCTE);
academic units for PCTE; PCTE: Training Primary Care Champions; and
Primary Care Medicine and Dentistry Career Development. The Primary
Care programs are also intended to encourage health professionals to
work in underserved areas. In fiscal year 2016, 49 percent of PCTE
program completers were underrepresented minorities and/or from
disadvantaged backgrounds.
The Primary Care Dentistry program invests in expanding programs in
dental primary care for pediatric, public health, and general
dentistry. The Pre- and Postdoctoral Training, Residency Training,
Faculty Development, and Faculty Loan Repayment programs encourage
integrating dentistry into primary care.
Diversity Pipeline Programs.--HRSA Titles VII and VIII programs
play an important role in improving the diversity of the healthcare
workforce and connecting students to healthcareers by supporting
recruitment, education, training, and mentorship opportunities.
HRSA's diversity training programs support aspiring health
professions students throughout the educational pipeline, helping to
ensure a culturally competent healthcare workforce, including.
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
thousands of students in the 2016-2017 academic year, with SDS
graduating 2,811 students and COE reaching more than 6,800 health
professionals; 55 percent of which were located in medically
underserved communities.
Title VIII's Nursing Workforce Diversity Program is intended to
increase nursing education opportunities for individuals from
disadvantaged backgrounds, including racial and ethnic minorities who
are underrepresented among registered nurses. The program supports
disadvantaged students through stipends and scholarships, and a variety
of pre-entry and advanced education preparation. In academic year 2016-
2017, the program trained 4,416 students, 100 percent of whom were
either underrepresented minorities and/or from disadvantaged
backgrounds.
Interdisciplinary, Community Health 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 communities they serve, these programs are well positioned to
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 Teaching Health Center Development; Graduate
Psychology Education; Opioid Workforce Enhancement Program; Mental and
Behavioral Health Education and Training; Behavioral Health Workforce
Education and Training (BHWET); and Allied Health Training work
directly with members of local communities to help meet their immediate
health needs.
The community-based training programs are structured to allow
grantees to test educational innovations, respond to changing delivery
systems and models of care, and address timely topics in their
communities. Area Health Education Centers (AHEC), which support
workforce development and training for medical and public health
professionals in rural areas, provided continuing education to 214,789
practicing health professionals across the country.
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 departments of health. In academic year 2016-2017, Public
Health Workforce grantees delivered unique continuing education courses
to 226,635 practicing professionals in the workforce.
Workforce Information and Analysis.--The Workforce Information and
Analysis program supports the compilation and analysis of data on the
Nation's health workforce, including longitudinal evaluation of the
Title VII and Title VIII programs through the National Center for
Health Workforce Analysis and the Regional Centers for Health Workforce
Analysis.
Geriatrics Workforce Development.--Title VII Geriatric Workforce
programs integrate geriatrics and primary care to provide coordinated
and comprehensive care for older adults. The geriatrics programs
provide training across the provider continuum (students, faculty,
providers, direct service workers, patients, families, and lay and
family caregivers), focusing on interprofessional and team-based care
and on academic community partnerships to address gaps in healthcare
for older adults. To advance the training of the current workforce, the
Geriatrics Workforce Enhancement Program (GWEP) provided 1,578 unique
continuing education courses, including 467 on Alzheimer's disease and
related dementia, to 173,078 faculty. In academic year 2016-2017 alone,
Title VII's GWEP trained 30,082 students and fellows in geriatric-
specific degree programs, field placements, and fellowships.
Nursing Workforce Development.--Title VIII nursing workforce
development programs provide Federal support to address all aspects of
nursing workforce demands, including education, practice, recruitment,
and retention, with a focus on rural and medically underserved
communities. These programs include Advanced Nursing Education; Nursing
Workforce Diversity; Nurse Education, Practice, Quality, and Retention;
NURSE Corps; and Nurse Faculty Loan Program. In the 2016-2017 academic
year, the Title VIII Advanced Education Nursing Traineeship and Title
VIII Nurse Anesthetist Traineeship programs supported more than 4,595
nursing and nurse anesthesia students, all of whom received clinical
training in primary care in medically underserved communities and/or
rural settings.
HPNEC is grateful for the House of Representatives providing $680
million for Title VII and Title VIII programs, and an additional $55
million for the new Loan Repayment Program for Substance Use Disorder
Treatment Work, the Mental and substance Use Disorder Workforce
Training Demonstration, and Nurse Practitioner Optional Fellowship
Program. These programs are essential to ensuring we have a trained
health workforce to treat patients who are affected by substance use
disorder. While we support the inclusion of these programs into Titles
VII and VIII, it is imperative that they are an expansion of Titles VII
and VIII and are not funded at the expense of current programs.
While HPNEC's members acknowledge the increasing demands and fiscal
challenges facing appropriators, funding for HRSA's workforce
development programs is critical in creating a culturally competent
health workforce that meets the needs of all Americans. Therefore,
HPNEC encourages the subcommittee to adopt at least a $690 million for
HRSA's current Title VII and VIII programs--and separate funding for
any new programs--to continue the Nation's investment in our health
workforce.
______
Prepared Statement of the Helen Keller National Center
The Helen Keller National Center (HKNC), authorized by the Helen
Keller National Center Act (CFDA No. 84.128), is funded by the
Department of Education and the Labor/HHS/Education Appropriations
Committees in the House and Senate. The Center requests an increase of
$2.5 million from its current $13.5 million to $16 million in funding
for fiscal year 2020.
Authorized by a unanimous vote of Congress in 1967, HKNC's mission
is to enable all deaf-blind citizens (totaling more than 2.4 million
Americans) to live, work and thrive in their community of choice. HKNC
operates the only comprehensive national vocational rehabilitation
program exclusively serving both youth and adults who are deaf-blind.
The Act mandates that the Center will:
--Provide specialized intensive services, or any other services, at
the Center or anywhere else in the United States necessary to
encourage the maximum personal development of any individual
who is deaf-blind.
--Train family members of individuals who are deaf-blind at the
Center or anywhere else in the United States, in order to
assist family members in providing and obtaining appropriate
services for the deaf-blind individual.
--Train professionals and allied personnel at the Center or anywhere
else in the United States to provide services to the deaf-
blind.
--Conduct applied research, development programs, and demonstrations
with respect to communication techniques, teaching methods,
aids and devices, and delivery of service.
--Maintain a national registry of individuals who are deaf-blind.
HKNCs business imperative as the national special institution
working with individuals who are Deaf-Blind is to ensure that each
person has access to quality services and supports to achieve their
goal to lead an independent and self-sufficient life.
The Helen Keller National Center (HKNC) is ``On-the-Move'' with a
greatly strengthened national infrastructure of services for deaf-blind
youths and adults. With recent additional Federal support in fiscal
year 2018 and fiscal year 2019, the Center has made tangible progress
implementing expanded field services. Newly deployed Deaf-Blind
Specialists, a replicated Deaf-Blind Community Services Program in
California and State interagency groups, are bringing much needed
change and positive growth to services nationwide addressing unmet
training needs of deaf-blind individuals. These advances are due to the
``boots on the ground'' resources HKNC has been able to deploy in
communities throughout the country and with the strengthened
partnerships, it has established among State and local service
providers. Currently 48 inter-agency groups have been formed with the
defined goal of supporting individuals who are deaf-blind to pursue and
achieve successful employment and maximized independence through
building and/or strengthening services and supports available at the
State and local level. In addition, HKNC's National Community of
Practice (NCOP) has 63 agency members working together to achieve
collaborative learning and improvements in the quality of services for
and among individuals who are deaf-blind. Last year in fiscal year 2018
HKNC provided resources and training to over 1100 professionals
nationwide.
The Center's expertise derives from more than a half century of
experience and the need to serve the estimated 2.4 million Americans
who are deaf-blind. However, without the continued efforts of HKNC to
build a sustainable national infrastructure, services will remain
uneven and limited in scope. Expertise among vocational rehabilitation
providers will continue to be inconsistent and in danger of not being
maintained at the highest quality standard. The members of the deaf-
blind community continually face barriers to independence and
successful competitive employment because of the lack of services and
qualified personnel. At this juncture additional Federal funding is
critically needed to stay the course and to ensure that each person who
is deaf-blind has the opportunity to live, work, and thrive in their
community of choice.
A $2.5 million increase in funding for HKNC is needed to maximize
current efforts and continue to address the growing unmet needs of the
deaf-blind community across America. The funding will be channeled
towards four priorities two of which are already in progress:
1. Continue field expansion through deployment of five additional
deaf-blind specialists (20 in total). Deaf-Blind specialists
report directly to the HKNC Regional Representative and are
charged with providing employment and independent living
services in the designated State home communities to those who
are deaf-blind. In addition, deaf-blind specialists provide
follow up services to individuals who have completed training
at HKNC who upon returning home are ready to work and enjoy a
full community life.
2. Replication of the HKNC Community Services Program (CSP) in two
additional States (4 in total) to expand local resources and
offer direct services to deaf-blind persons and their families.
Employment Services including job placement, Independent Living
Services, Orientation & Mobility, and Casework services will be
provided by two multi-disciplinary teams in two additional
State locations. Current CSPs are located in downstate N.Y. and
Los Angeles/San Diego, California.
3. The establishment of a the HKNC Training, Innovation & Research
Center (TRIC), a State-of-the art adaptive technology training
center for deaf-blind individuals, the professionals who work
with them, and manufacturers of technology products and IT
personnel. Not only will this center prepare deaf-blind
individuals with technical literacy compatible with workforce
competencies it will train adaptive technology trainers and
offer feedback and review to the universal design and
accessibility of products for deaf-blind users to manufacturers
of technology.
4. The implementation of a Support Service Provider (SSP) program
for participants at HKNC's comprehensive vocational
rehabilitation program in Sands Point N.Y. and for those on its
staff who are deaf-blind, to ensure accessibility and full
inclusion in their living and working environment. An SSP
provides visual and auditory environmental information to
HKNC's deaf-blind staff for the accessibility necessary to
carry out job responsibilities such as observing and coaching
staff, observing lessons, gaining awareness of person present
in a setting and any non-verbal information, visual or auditory
that is contextual and supports the deaf-blind person's
understanding and engagement. By developing a model SSP program
for deaf-blind participants in the HKNC comprehensive
vocational rehabilitation program including its own deaf-blind
employees, the center will be able to offer staff an accessible
work environment and maintain highest standards as a national
model employer for individuals who are deaf-blind. In addition,
HKNC will develop and disseminate best practices to other State
and local programs
By investing in these priority areas, U.S. Senate will be advancing
HKNC's ability to deliver its service model nationwide, to meet the
employment and independent living needs of individuals who are deaf-
blind. Creating opportunities for individuals to learn skills and have
access to advanced technology as well as providing effective support
services allows each person to engage fully in their living and working
environments, achieve success, and enjoy a greatly enhanced quality of
life.
With increased funding to $16 million HKNC can fortify the network
of service providers nationwide and establish a sustainable
infrastructure leading to exemplary practices and collaborative efforts
in services, learning and research.
HKNC and its national partners are working collaboratively. The
result is a national impact resulting in systematic change and capacity
building across the country.
HKNC deeply appreciates the shared commitment by U.S. Senate to
create a national sustainable infrastructure of services to deaf-blind
citizens. We have momentum, ability and vision. We are make progress
towards fidelity, sustainability and replication. The last requirement
of funding for this next phase will make a highly significant impact
and ensure that all Americans who are deaf-blind have an equal
opportunity to live self-actualized lives as fully contributing, and
included citizens.
[This statement was submitted by Susan Ruzenski, Executive
Director, Helen
Keller National Center.]
______
Prepared Statement of the Higher Learning Advocates
Higher Learning Advocates (HLA) would like to thank the
Subcommittee on Labor, Health and Human Services, Education and Related
Agencies (L-HHS-ED) for soliciting the views and recommendations of
public witnesses on fiscal year 2020 funding. Higher Learning Advocates
(HLA) is a non-profit advocacy organization working to shift Federal
policy from higher education to higher learning--education and training
beyond high school that leads to a degree, credential, or employment.
With more students participating in higher education than ever before,
we strive to strengthen the connection between Federal policy and the
needs of today's students, employers, and communities. We advocate for
Federal policies and programs that create transparent pathways to
success, incentivize innovation, protect students and taxpayers, and
improve outcomes.
HLA urges the subcommittee to make significant investments in key
higher education and child care programs as part of the fiscal year
2020 appropriations process. These investments are critical if we are
to advance policies to reflect the needs of today's students and
encourage a system of higher learning that is affordable and responds
to the current needs. Specifically, HLA is requesting $7.7 billion for
the Child Care and Development Block Grant (CCDBG), $150 million for
the Child Care Access Means Parents in Schools (CCAMPIS) program, and
$10 million for the Open Textbooks Pilot Program. In addition, we
strongly urge the Subcommittee to support and improve the Pell Grant
program, leaving the current Pell Grant surplus untouched so it is
available to fund future Pell needs and not used as a piggy bank for
other funding priorities.
Before we focus on these individual programs, we need to highlight
the importance of raising the non-defense discretionary (NDD) funding
limits for fiscal year 2020 and fiscal year 2021. As you know, NDD
funding would be cut by $55 billion compared to fiscal year 2019
spending levels under the Budget Control Act. Even with the U.S. House
of Representatives establishing the overall spending level for the full
House appropriations committee and House subcommittee allocations, an
eventual agreement by the House, Senate, and Administration to increase
statutory NDD spending limits for fiscal year 2020 is still necessary
to avoid these cuts. Absent a bipartisan agreement to increase the non-
defense discretionary spending caps, investments in education and other
related critical priorities would suffer. We hope an eventual
bipartisan agreement to raise these spending limits is possible in the
near future to allow Congress to make the important investments we
highlight, and others, possible.
The needs of today's students are changing. Recent data by the
Institute for Women and Policy Research show that almost a quarter of
college students are parents themselves. Access to high-quality,
affordable, and accessible child care can be a critical element to
ensuring that a student is able to attend and complete higher
education.
Our organization requests increasing funding for the Child Care and
Development Block Grant (CCDBG) to support all parents--including
student parents--to $7.7 billion. CCDBG is a Federal program that
provides State grants to help low-income student parents afford the
cost of child care services, so they can work, train for work, or
attend school. This is the same level that would be appropriated under
the House Committee--passed LHHS bill. Low-income parents, including
student parents, greatly benefit from CCDBG funding, which provides
them with low-cost and easy-to-access child care. Unfortunately, a
large share of eligible children from low-income families do not
receive child care assistance, and the number of children served by
CCDBG continues to decline. This funding boost is crucial to respond to
these realities.
We also request increased funding for the Child Care Access Means
Parents in Schools (CCAMPIS) program to $150 million--the amount needed
to provide child care support to approximately 2 percent of Pell-
eligible student parents of children ages 0-5. The CCAMPIS program
provides vital support for the participation and success of low-income
parents in postsecondary education through the provision of campus--
based child care, which is widely recognized as one of the most
important supports for parenting college students. In 2001, funding for
CCAMPIS peaked at $25 million but declined significantly in 2003 to $16
million, where it remained relatively stable until fiscal year 2017. In
fiscal year 2018, CCAMPIS funding was increased to $50 million. CCAMPIS
funding must continue to increase to best serve today's student
parents.
Additionally, we urge you to maintain the initial Federal
investment for the Open Textbooks Pilot program at $10 million in
fiscal year 2020 appropriations to help institutions develop and
utilize open educational resources. The cost of traditional textbooks
is a burden for today's students--at community colleges, textbook costs
can account for up to 80 percent of the cost of attendance. The prices
of textbooks have increased by 88 percent between 2006 and 2016, and
students typically spend $1,240-$1,440 on books and supplies per year.
About 48 percent of Pell Grant recipients and 52 percent of
underrepresented minorities said that open educational resources (OER)
significantly impact their ability to afford college. Federal
investment in the Open Textbooks Pilot program will afford students
better access to educational materials needed to succeed in
postsecondary education.
Finally, we urge that as you consider funding for the Pell Grant
program, you focus on supporting and improving the program; take action
to continue inflation indexing to avoid further erosion of the Pell
Grant's purchasing power; and look for ways to increase the maximum
award to benefit today's students. Additionally, we urge that any
portion of the current Pell Grant surplus is not rescinded or
redirected toward any other priorities. Recent proposals have utilized
portions of the surplus to pay for other priorities, rather than
keeping these funds within the Pell Grant program to pay for the
eventual rise in program costs that the Congressional Budget Office and
others predict for the program. Cutting the surplus will only hurt the
long-term viability of the Pell Grant program, jeopardizing the
critical role that Pell plays in financing the cost of a college
education for low-income students. Rather than looking to the Pell
Grant program to reduce the Nation's deficit or pay for new projects,
Congress should instead ensure that this critical feature of the
program is retained so that there is not a funding crisis or reduction
in future years.
Thank you for the opportunity to submit testimony in support of
CCAMPIS, CCDBG, the Open Textbooks Pilot, and the Pell Grant. Congress
must continue to invest in these programs in order to ensure today's
students, including student parents and individuals from underserved
populations, are able to access and complete postsecondary education.
We appreciate your consideration of this request and are happy to
follow up on any questions you may have.
______
Prepared Statement of the HIV Medicine Association
The HIV Medicine Association (HIVMA) of the Infectious Diseases
Society of America (IDSA) represents nearly 6,000 physicians,
scientists and other healthcare professionals on the frontlines of the
HIV epidemic. Our members provide medical care and treatment to people
living with HIV in the U.S. and globally, lead HIV prevention programs
and conduct research that has led to the development of effective HIV
prevention and treatment options. For the fiscal year 2020
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 new funding to support
the ``Ending the HIV Epidemic'' Initiative; and heighten our response
to the opioid epidemic including the infectious diseases consequences
associated with it and addressing workforce shortages by funding the
SUPPORT Act's Loan Repayment for Substance Use Treatment Disorder
Treatment Workforce Program at least at $25 million as authorized.
Though we face continued challenges in HIV prevention and care, we are
in strong support of the administration's recognition that we have the
tools to end the epidemic. Adequate funding increases for relevant
Federal agencies are needed now more than ever to achieve these goals.
Our investments in evidence-based public health approaches to HIV
prevention, treatment, care, and research over the last 35 years have
produced groundbreaking scientific discovery, saved millions of lives,
and offset tremendous costs to the healthcare system by preventing new
infections. We know that early diagnosis and access to HIV treatment
allows persons with HIV to live healthy and productive lives, is cost-
effective, and directly benefits public health by stopping new HIV
transmissions when people living with HIV maintain viral suppression.
Despite our progress, in recent years, new HIV diagnoses.have plateaued
rather than declined. Just over half of people living with HIV in the
U.S. are benefiting from treatment,\1\ and disparities among vulnerable
populations have widen. 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.
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\1\ Centers for Disease Control and Prevention. HIV Continuum of
Care, U.S., 2014, Overall and by Age, Race/Ethnicity, Transmission
Route and Sex. https://www.cdc.gov/nchhstp/newsroom/2017/HIV-Continuum-
of-Care.html.
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Health Resources and Services Administration--HIV/AIDS Bureau:
To continue providing comprehensive, life-saving treatment and care
for over 550,000 people living with HIV, and to begin bringing many
more people into care through the Ending the HIV Epidemic Initiative,
we request a $215.8 million increase over fiscal year 2019 levels for
the Ryan White HIV/AIDS Program for a total of $2.535 billion. At this
critical time of launching the ``Ending the HIV Epidemic'' in the U.S.
initiative, bolstering the Ryan White Program with new funding is
necessary to build workforce capacity and expand access to quality,
expert care for people diagnosed with HIV.
In particular, HIVMA urges an allocation of $225.1 million, or a
$24 million increase over current funding, for Ryan White Part C
programs. Part C-funded HIV medical clinics are struggling to meet the
demand of increasing patient caseloads. The team-based and patient-
centered Ryan White care model has been highly successful at improving
clinical outcomes for a population with complex healthcare needs.
Persons with HIV who receive Ryan White services are more likely to be
prescribed HIV treatment and to be virally suppressed. Between 2010 and
2017, the viral suppression rate for all Ryan White clients increased
from 70 percent to 86 percent.\2\ We also know that the annual
healthcare costs for persons who are diagnosed late and/or do not have
reliable access to care and treatment are nearly 2.5 times greater than
that of healthier persons with HIV.\3\ Increased Ryan White Part C
funding also is urgently needed to meet the increasing demand for
substance use disorder and mental health treatment at Ryan White
clinics.
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\2\ Health Resources and Services Administration. Ryan White HIV/
AIDS Program Annual Client-Level Data Report 2016. https://
hab.hrsa.gov/sites/default/files/hab/data/datareports/RWHAP-annual-
client-level-data-report-2016.pdf.
\3\ Gilman BH, Green, JC. Understanding the variation in costs
among HIV primary care providers. AIDS Care, 2008:20;1050-6. doi:
10.1080/09540120701854626.
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We also recommend funding the administration's request of $70
million in new funding for the ``Ending the HIV Epidemic'' initiative,
which will bolster Ryan White services and providers in the 48
counties, Washington DC, San Juan, and seven rural States in
preparation of bringing thousands of newly diagnosed people with HIV
into quality care and with adequate support services.
Health Resources and Services Administration--Bureau of Primary Health
Care:
We recommend appropriating $50 million in new funding for HRSA's
Community Health Center program for the End the HIV Epidemic
initiative. The administration's budget proposes repurposing $50
million existing dollars for community health centers in order to scale
up pre-exposure prophylaxis (PrEP) services for people at high risk of
acquiring HIV, which is a critical intervention and is a focal point of
the Ending the HIV Epidemic initiative. Community health centers,
especially those already funded by the Ryan White Program, are critical
entry points for people with limited resources or without other sources
for care to get tested and initiate PrEP. CDC estimates only 10 percent
of those who could benefit from PrEP have been prescribed PrEP, and
those who need it most--Black and Latino gay and bisexual men at high
risk--are prescribed it at a much lower rate.\4\ Scaling it up in the
targeted counties and States in the most affected populations is
critical to ending the HIV epidemic. Without a vaccine on the horizon,
PrEP for HIV is our most effective prevention tool.
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\4\ CDC. HIV prevention pill not reaching most Americans who could
benefit--especially people of color. https://www.cdc.gov/nchhstp/
newsroom/2018/croi-2018-PrEP-press-release.html.
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Centers for Disease Control and Prevention--National Center for HIV/
AIDS, Viral Hepatitis, Sexually Transmitted Diseases, and
Tuberculosis Prevention:
In order to meaningfully address the HIV, viral hepatitis and STDs
syndemics, as well as the co-occurring crisis of addiction and
injection drug use associated with the opioid epidemic, we request a
$496 million overall increase above fiscal year 2019 levels for a total
of $1.628 billion.
For the Division of HIV/AIDS Prevention (DHAP), we request a total
of $1.012 billion, which is an $224 million increase over fiscal year
2019 levels. DHAP conducts our national HIV surveillance and funds
State and local health departments and communities to conduct evidence-
based HIV prevention activities. New annual infections recently fell
below 40,000 for the first time in decades, but since then our outcomes
have stagnated.\5\ CDC's high impact prevention strategies work, but
with flat funding, we cannot reach more people at risk for HIV. We also
recommend appropriating the $140 million requested by the
administration for the ``Ending the HIV Epidemic'' initiative, which
will allow CDC to jumpstart new efforts to scale up HIV testing,
implement PrEP programs, and link people newly diagnosed with HIV
immediately to HIV care.
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\5\ CDC. HIV Incidence: Estimated Annual Infections in the U.S.,
2010-2016. https://www.cdc.gov/nchhstp/newsroom/2019/HIV-
incidence.html.
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Additionally, we urge the appropriation of the requested $58
million for the CDC to fund surveillance and programming to monitor and
prevent opioid-related infectious diseases. The proportion of new HIV
and infections due to injection-drug use has grown in recent years and
new viral hepatitis infections have increased significantly.\6\
Bacterial infections like endocarditis still have no national
surveillance, but anecdotally our members report significant increases
in these costly infections.
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\6\ CDC. Injection Drug Use and HIV Risk. https://www.cdc.gov/hiv/
risk/idu.html.
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Policy--Syringe Service Programs:
HIVMA applauds the subcommittee's work in advancing report language
that allows for the use of Federal funding for syringe services
programs as an important prevention and public health intervention. We
support its continuation and expansion to include the purchase of
syringes and other equipment.
For the Division of Viral Hepatitis (DVH), we request a total of
$134.0 million, which is a $95 million increase over fiscal year 2019
levels. Last year, CDC announced that in 2016, there were over 41,000
new cases of hepatitis C, a 21 percent increase over 2015 and a 350
percent increase since 2010. New HCV and hepatitis B infections are
being driven by injection drug use throughout the country, and
especially in regions hardest hit by the opioid epidemic.\7\ A
significant increase in resources is needed so that CDC can adequately
fund and support viral hepatitis education, prevention, testing, and
surveillance activities. With existing resources, the United States is
simply not equipped to monitor viral hepatitis cases and the impact of
these infections, much less appropriately cure and sufficiently prevent
new infections.
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\7\ Centers for Disease Control and Prevention. Viral Hepatitis
Surveillance Report 2016. https://www.cdc.gov/hepatitis/statistics/
2016surveillance/pdfs/2016HepSurveillanceRpt.pdf.
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For the Division of STD Prevention (DSTDP), we request a total of
$227.3 million, which is a $70 million increase over fiscal year 2019
levels. Last year, CDC again reported the greatest ever number of new
STD cases, with over 1.7 million cases of chlamydia, 555,000 cases of
gonorrhea, and over 30,000 cases of syphilis, including 918 cases of
congenital syphilis (mother-to-child transmission). This is a national
public health emergency, and should be declared as such. CDC and
jurisdictional health departments need a significant investment of new
resources to expand local public health capacity to conduct screening,
linkage to treatment, and partner services.
National Institutes of Health--Office of AIDS Research:
In order to continue funding 21st century discoveries that will
help us end the HIV epidemic, such as improved HIV prevention
modalities and treatment options, we request an overall fiscal year
2020 budget level of at least $2.5 billion above fiscal year 2019
levels for the National Institutes of Health (NIH). Consistent with the
most recent Trans-NIH HIV/AIDS Research Professional Judgment Budget
for fiscal year 2020, we ask that at least $3.502 billion be allocated
for HIV research in fiscal year 2020, an increase of $457 million. This
level of funding is vital to sustain the pace of research that will
improve the health and quality of life for millions of people in the
U.S. and in the developing world. Flat funding of HIV research since
fiscal year 2015 threatens to slow progress toward a vaccine and a
cure, erode our capacity to sustain our Nation's leadership in HIV
research and innovation, and discourage the next generation of
scientists from entering the field. We also ask that the subcommittee
include the language present in the House Appropriations L-HHS
subcommittee's report that ``directs NIH to increase funding for HIV/
AIDS research by at least the same percentage as the increase in NIH
overall funding.''
Indian Health Service--Eliminating HIV and Hepatitis C in Indian
Country:
We support and urge the appropriation of the $25 million in new
funding for IHS to establish a new HIV and hepatitis C elimination
initiative as part of the Ending the HIV Epidemic initiative.
Conclusion:
We have the tools to end the HIV epidemic in the U.S. To accomplish
this, we must substantially increase funding to support comprehensive
prevention and care programs, grow a qualified workforce and create a
healthcare system which routinely screens people for HIV and provides
access to those living with HIV uninterrupted access to care and
treatment. In addition, addressing co-occurring epidemics like viral
hepatitis, STDs, and substance use is critical. We urge the sub-
committee to invest in a robust public health system and biomedical
research to make this a reality.
[This statement was submitted by W. David Hardy, MD, Chair, HIV
Medicine
Association.]
______
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 $460 million for the Agency for Healthcare Research and
Quality (AHRQ) and $346.3 million for the National Institute for
Occupational Safety and Health (NIOSH), including a $2 million increase
over the fiscal year 2019 level for the Education and Research Centers
(ERCs); the Agriculture, Forestry and Fishing (AFF) Program; and the
Total Worker Health Program in fiscal year 2020.
AHRQ funds research to protect and promote patient safety and care,
while identifying and evaluating efficiencies to save lives and reduce
costs. HFES requests $460 million, which is consistent with the fiscal
year 2010 level adjusted for inflation. This funding level will allow
AHRQ to rebuild portfolios terminated after years of cuts and will help
the agency avoid a funding cliff that will result in more than a 25
percent cut to its program level budget when the Patient-Centered
Outcomes Research (PCOR) Trust Fund is at risk of expiring at the end
of fiscal year 2019. HFES also urges the Subcommittee to continue to
fund AHRQ as its own agency, rather than integrating it into the
National Institutes of Health (NIH), as proposed in the President's
fiscal year 2020 budget request.
Additionally, HFES requests $346.4 million for NIOSH, including a
$2 million increase over the fiscal year 2019 level for the Education
and Research Centers (ERCs); the Agriculture, Forestry and Fishing
(AFF) Program; and the Total Worker Health Program. The fiscal year
2020 President's budget request proposes reducing the NIOSH budget and
eliminating many NIOSH programs, which would limit the ability of
workers to avoid exposures that can result in injury or illnesses, push
back improved working conditions, eliminate occupational safety and
health educational services to U.S. businesses, and ultimately raise
healthcare costs.
HFES and its members recognize and appreciate the challenging
fiscal environment in which we as a Nation currently find ourselves.
However, we believe strongly that investment in scientific research
serves as an important driver for innovation and the economy as well as
for protecting and promoting the health, safety, and well-being of
Americans. We thank the Subcommittee for its longtime recognition of
the value of scientific and engineering research and its contribution
to innovation and public health in the U.S.
the value of human factors and ergonomics science
HFES is a multidisciplinary professional association with over
4,500 individual members worldwide, including psychologists and other
scientists, engineers, and designers, all with a common interest in
designing safe and effective systems and equipment that maximize and
adapt to human capabilities.
For over 50 years, the U.S. Federal Government has funded
scientists and engineers to explore and better understand the
relationship between humans, technology, and the environment.
Originally stemming from urgent needs to improve the performance of
humans using complex systems such as aircraft during World War II, the
field of human factors and ergonomics (HF/E) works to develop safe,
effective, and practical human use of technology. HF/E does this by
developing scientific approaches for understanding this complex
interface, also known as ``human-systems integration.'' Today, HF/E is
applied to fields as diverse as transportation, architecture,
environmental design, consumer products, electronics and computers,
energy systems, medical devices, manufacturing, office automation,
organizational design and management, aging, farming, health, sports
and recreation, oil field operations, mining, forensics, and education.
With increasing reliance by Federal agencies and the private sector
on technology-aided decisionmaking, 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 decisionmaking,
engineering, design, technology, and the world around us. The reach of
HF/E is profound, touching nearly all aspects of human life from the
healthcare sector, to the ways we travel, to the hand-held devices we
use every day.
conclusion
HFES urges the Subcommittee to provide $460 million for AHRQ and
$346.3 million for NIOSH, including a $2 million increase for the
Education and Research Centers (ERCs); the Agriculture, Forestry and
Fishing (AFF) Program; and the Total Worker Health Program in fiscal
year 2020. 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 Kermit Davis, PhD, President, and
Steven C. Kemp, CAE, Executive Director, Human Factors and Ergonomics
Society.]
______
Prepared Statement of the Infectious Diseases Society of America
On behalf of the Infectious Diseases Society of America (IDSA),
which represents more than 11,000 physicians, scientists, public health
practitioners and other providers involved in infectious diseases
prevention, care, research and education, I urge the Subcommittee to
provide robust fiscal year 2020 funding for public health and
biomedical research activities that save lives, contain healthcare
costs and promote economic growth. IDSA asks the Subcommittee to
provide at least $8.2 billion for the Centers for Disease Control and
Prevention (CDC), at least $41.7 billion for the National Institutes of
Health (NIH), and at least $750 million for the Biomedical Advanced
Research and Development Authority (BARDA).
centers for disease control and prevention
Antibiotic Resistance Solutions Initiative
We urge at least $200 million in funding for the Initiative in
fiscal year 2020. IDSA members see the impact daily that antimicrobial
resistance (AMR) has on patients. Antimicrobial resistance is a public
health crisis. In November 2018, a Journal of Infection Control and
Hospital Epidemiology report found that as many as 162,044 people die
in the U.S. each year as a result of antimicrobial resistance, making
AMR the third leading cause of death in our country. To protect
patients and save lives, the Federal response to AMR must be increased
to prevent and detect multi-drug resistant infections. The requested
funding would allow CDC to expand Healthcare-Associated Infections
(HAI)/AMR prevention efforts in all 50 States, six large cities, and
Puerto Rico. A deeper investment of $200 million will allow CDC to work
with additional healthcare providers and facilities to implement
effective antimicrobial stewardship programs to reduce inappropriate
antibiotic use and prevent resistant infections. Increased funding is
also needed to expand global surveillance and antibiotic stewardship
activities. The CDC projects over the 5 years of the initiative, the
most frequent resistant infections affecting our communities will be
substantially reduced. Specifically, this funding will markedly limit
infections due to healthcare-associated carbapenem-resistant
Enterobacteriaceae (CRE) (est. 60 percent infection decline),
Clostridium difficile and bloodstream methicillin-resistant
Staphylococcus aureus (MRSA) (est. 50 percent decline in each)
healthcare-associated multidrug-resistant Pseudomonas spp. (est. 35
percent decline), and multidrug-resistant Salmonella infections (est.
25 percent decline). These substantial payoffs mean a clear net
positive for the Federal budget to recoup the direct costs of the
program and a win for patients and their families.
Advanced Molecular Detection (AMD)
Funding of at least $32.5 million for the AMD program would allow
CDC to determine the source of emerging diseases more rapidly, whether
microbes are resistant to antibiotics, and how pathogens are moving
through a population. AMD strengthens CDC epidemiologic and laboratory
expertise to guide public health actions more effectively. Additional
funding in fiscal year 2020 would help ensure State and local health
departments have enhanced knowledge to harness DNA sequencing of
pathogens facilitate early detection and response to surging disease
outbreaks.
National Healthcare Safety Network
Fiscal year 2020 funding of at least $22.75 million for the
National Healthcare Safety Network (NHSN) will enable CDC to expand
tracking of healthcare-associated infections (HAIs), antibiotic use,
and antibiotic resistance. The NHSN is the most widely used HAI
tracking system in the country and provides facilities, States,
regions, and the Nation with data needed to identify problem areas, by
providing information on antibiotic use and resistance, measuring the
progress of prevention efforts, and ultimately eliminating HAIs. As of
April 1, 2018, 776 out of the over 5,500 U.S. hospitals have
voluntarily reported antibiotic use data, and 317 hospitals have
reported antibiotic resistance data to the CDC NHSN Antibiotic Use and
Resistance (AUR) module. This represents only limited progress and
falls strikingly short of the stated goal in the National Action Plan
for Combating Antibiotic Resistant Bacteria for 95 percent of hospitals
to report these data by 2020. Comprehensive data on antibiotic use and
resistance are essential to inform, evaluate and enhance antibiotic
stewardship activities and other efforts to address AMR.
Infectious Diseases and the Opioid Epidemic
The opioid epidemic is driving increasing rates of multiple
infectious diseases including HIV, hepatitis B and C, and infections of
the heart, skin and soft tissues, bones, and joints. IDSA is grateful
to Congress and the Administration for enacting the SUPPORT Act, which
expanded the Public Health Services Act to enhance the Federal response
to infectious diseases commonly associated with injection drug use.
Given the significant and growing burden of the opioid epidemic, IDSA
strongly urges that Congress provide at least $58 million to address
infectious diseases associated with the opioid epidemic. We also
recommend report language to make clear that this funding should be
used to support surveillance, prevention services, detection and
linkages to care for the scope of viral, bacterial, and fungal
infectious diseases associated with injection drug use.
National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention
Rising cases of sexually transmitted diseases (STD) underscore the
need for new resources for a robust public health response. Gonorrhea
diagnoses increased by 67 percent from 2016 to 2017, the third
consecutive year of increases. Growing antibiotic resistance has left
only one highly effective antibiotic to treat gonorrhea in the U.S.,
and reports of gonorrhea infections in other countries that are
resistant to all antibiotics are deeply concerning. Primary and
secondary syphilis cases have increased by 76 percent from 2016 to
2017. The number of congenital syphilis cases is the highest it has
been since 1997. New hepatitis C cases nearly tripled from 2010 to
2015, many due to injection drug use. CDC estimates that the actual
number is much higher since hepatitis C has few early symptoms, and
many newly infected individuals go undiagnosed. The tools necessary to
end the hepatitis C epidemic exist, but resources are needed to expand
surveillance and prevention efforts, identify individuals with
hepatitis C, and link them to treatment. IDSA recommends at least $1.47
billion for this Center.
CDC Center for Global Health
IDSA urges the Subcommittee to provide at least $642 million in
fiscal year 2020 funding to support programs at the CDC Center for
Global Health that protect Americans by helping to stop health threats
overseas before they reach American soil. The global health program is
critical to ensure America's health security, including strengthening
laboratory capacities, disease surveillance and field epidemiology
activities in the developing world. As the ongoing Ebola outbreak in
the Democratic Republic of Congo demonstrates, current investments in
preparedness and response to outbreaks is essential. CDC is a key
implementer of the Global Health Security Agenda that will expire in
September 2019 if additional resources are not committed.
Epidemic Intelligence Service Loan Repayment
IDSA urges the Subcommittee to provide at least $5 million for the
EIS program. The EIS is a two-year program within CDC's Division of
Scientific Education and Professional Development in which health
professionals learn epidemiology to respond to public health
emergencies. EIS officers mobilized for the 2014-2015 Ebola response,
as well as responses to Zika, the opioid epidemic, natural disasters
and human-made biothreats such as anthrax. The 2018 EIS class includes
only 62 officers (75-80 is optimal), setting the program back to the
response capability of the 1980s. The Pandemic and All Hazards
Preparedness and Advancing Innovation Act (PAHPAI) provides CDC
authority to offer student loan repayment to EIS officers to strengthen
their recruitment. New funding is needed to implement this authority.
Infectious Diseases Rapid Response Fund
The quick spread of emerging infectious diseases makes clear the
need for the Rapid Response Fund. The Fund enables CDC and other
Federal agencies to quickly address public health emergencies and
infectious disease outbreaks at their source, and before they reach
American shores, if possible. A deeper investment of at least $300
million is needed to ensure agencies, led by the CDC can move forward
with brisk, well-organized initial response activities to contain the
spread of infection; treat infected individuals and launch research for
vaccines, diagnostics and therapeutics.
national institutes of health
National Institute of Allergy and Infectious Diseases (NIAID)
Within NIH, funding of at least $5.808 billion should be provided
for NIAID. The NIAID plays a leading role in research for new rapid ID
diagnostics, vaccines, and therapeutics. Given the threat to public
health posed by growing antimicrobial resistance, a deeper investment
in valuable research at NIAID through the Combating Antibiotic
Resistant Bacteria Initiative will support relevant research into how
to counter the ever-evolving threat posed by resistant microbes.
With increased funding in fiscal year 2020, NIAID would be able to
establish a global network of emerging infectious diseases research
centers with multidisciplinary teams to better understand emerging
threats and how to stop them. The Institute would be able to fund an
acute flaccid myelitis (AFM) natural history study. AFM is a severe
weakness likely linked to viral infection, and it mostly impacts
children. While the severe impacts of AFM have thus far struck a small
number of patients, there is an opportunity for this virus to spread
much more broadly. More research is needed to better understand the
underlying viral causes to drive prevention and treatment. NIAID is
also planning to expand efforts to support the next generation of
researchers, but this will be challenging without additional resources.
Support at the requested level would enable NIAID to increase funding
and success rates for early and mid-career awards, and pilot a new
innovator award to promote bold new ideas from early stage
investigators. This kind of thinking is precisely what is needed to
address growing ID threats.
Fogarty International Center
Congress should provide full funding of at least $84.9 million for
the Center in fiscal year 2020. The Fogarty Center is instrumental to
our Nation's global standing, global health security and our ability to
detect and respond to pandemics. U.S. patients and researchers benefit
from Fogarty funded breakthroughs on diseases including HIV,
tuberculosis, malaria, cancer, diabetes, and heart disease. More than
80 percent of Fogarty's extramural grant budget goes to U.S. academic
institutions and 100 percent of funding engages U.S scientists and
researchers.
assistant secretary for preparedness and response
Biomedical Advanced Research and Development (R&D) Authority
BARDA is a critical initiator of public-private collaborations for
antibiotic, diagnostic and vaccine R&D. IDSA recommends that the
Subcommittee provide at least $750 million for BARDA in fiscal year
2020. Such funding is necessary to allow BARDA to pursue essential work
on antibiotic development while maintaining its strong focus on medical
countermeasures to address other biothreats. The BARDA-NIH Combating
Antibiotic Resistant Bacteria Biopharmaceutical Accelerator, or CARB-X,
is one of the world's largest public-private partnerships focused on
preclinical discovery and development of new antimicrobial products.
CARB-X is working on setting up a diverse portfolio with more than 20
high-quality antibacterial products.
centers for medicare and medicaid services
Infectious diseases physicians underpin the ability of hospitals to
provide complex medical care advances (e.g., transplant medicine, many
surgical procedures) as well as enhancing the quality of care in
hospitals. Further, in the community, for example, ID physicians serve
to advance public health, foster appropriate use of antibiotics and
continue the care of often highly complex patients after discharge from
the hospital. Despite these crucial roles in broadly supporting medical
care, ID physicians are undervalued. At a time when ID physicians are
needed more than ever, there has been a 21.6 percent decline in the
number of applicants to infectious disease fellowship training programs
over a 5-year period ending in 2016.IDSA surveyed internal medicine
residents in 2014 and found financial concerns were the chief barrier
to pursuing ID. Further, the average salary of an ID physician
(according to IDSA's 2017 compensation survey) is $100,000 less than
the median salary of a specialty physician (according to the 2017
Medscape Physician Compensation Report). The chief driver of the
compensation gap is the evaluation and management (E/M) codes, which
cover more than 90 percent of ID physician services, which have not
been updated in over a decade. IDSA was very grateful that the
Subcommittee's report on the fiscal year 2017 LHHS bill included report
language urging CMS to address this issue. Unfortunately, the 2019
Physician Fee Schedule Final Rule exacerbates the low value of E/M
codes by maintaining level 5 E/M to account for the most complex
patients and visits, but collapsing levels 2-4 E/M codes in 2021, which
would result in reductions in payment for the Level 4 E/M. The final
rule does not reflect Congress's urging to work with the medical
community on a revised proposal and fiscal year 2017 report language
urging CMS to address the undervaluation of E/M codes. IDSA urges the
Subcommittee to encourage CMS to take time during the 2020 rule-making
process to better understand how reimbursement for E/M services impacts
the current ID workforce distribution and shortage. CMS must ensure
that changes to the payment structure should not further exacerbate
workforce shortages which may ultimately lead to not only significant
patient access issues but increased morbidity and possibly mortality
for vulnerable U.S. citizens afflicted with infectious diseases.
conclusion
Thank you for the opportunity to submit this statement. The
Nation's infectious diseases physicians and scientists rely on strong
Federal partnerships to keep Americans healthy and urge you to support
these efforts. Please forward any questions to Lisa Cox at
[email protected].
[This statement was submitted by Cynthia Sears, MD, FIDSA, IDSA,
Infectious Diseases Society of America.]
______
Prepared Statement of the Institute of Education Science's
We write today to express concern regarding the elimination of the
Institute of Education Science's (IES) Researcher-Practitioner
Partnerships in Education funding program. We believe that
discontinuing this program will deny communities across the country the
opportunity to generate valuable evidence that can be used to address
local educational challenges. This decision appears to signal an IES
unwillingness to fund research-practice partnerships as a strategy to
provide education stakeholders the usable information they say they
want and need.
In recent years more than 250 publicly or privately funded
research-practice partnerships (RPPs) have operated at the local and
State levels across the country. Among them are the 53 funded through
the IES program that has been eliminated. Additionally, IES currently
supports more than 80 partnerships through its operation of the
Regional Educational Laboratory program.
RPPs are long-term collaborative partnerships between researchers
in universities and research organizations and education stakeholders
(educators, State and local education administrators, parents and
community members, professional educator associations, government and
business leaders, and others) to tackle important local challenges.
RPPs are currently working on a variety of issues, such as
strengthening the educator workforce, promoting college and career
readiness and success, bolstering early childhood education, improving
math and science instruction, and creating equitable learning
environments.
These partnerships are built on the common-sense observation that
education stakeholders are more likely to value and use research if
they are involved in identifying which local educational challenges
should be studied, playing a role in designing the research, and
participating in communicating and engaging with education stakeholders
in the use of the evidence produced. RPPs do more than produce
research, they also facilitate the application of evidence in
decisionmaking by creating engaging videos, webinars and activities
that help evidence come to life.
Given their popularity, we were concerned to learn that the IES is
abandoning support of RPPs by discontinuing funding of the Researcher-
Practitioner Partnerships in Education program. This is despite the
positive evidence contained in a 2017 IES-commissioned study that found
the following benefits reported by participants of the first three
funded cohorts of the program:
--Researchers and practitioners alike highly valued their
participation in partnership work, with 100 percent of those
surveyed either agreeing or strongly agreeing that they would
participate in an RPP in the future.
--Practitioners named several benefits, including helping to shift
organizational culture for research use and increasing access
to resources and expertise aimed at understanding and
addressing a specific problem of practice.
--Both researchers and practitioners also felt that the quality and
applicability of research increased as a result of the
partnership.
Beyond discontinuance of the funding program, over the past several
months IES Director Schneider has criticized the RPP approach, raising
questions regarding whether any future IES funds will be used to
support research-practice partnerships. Such actions would fly in the
face of common-sense, the enthusiasm demonstrated in many local
communities for this approach, and the positive evidence generated by
IES itself.
There is great potential negative impact of the elimination of
funding for these promising RPP projects. For example past RPP grants
allowed the University of Missouri, Columbia to partner with six school
districts in Boone County; the University of Washington to partner with
Seattle Public Schools and Spokane Public Schools through three
separate grants; and Washington State University to partner with the
Washington Education Service District 105. Future communities will be
denied the opportunity to engage in similarly useful projects.
Based on these concerns, we urge you to include language in the
appropriation report encouraging IES to ``express support for research-
practice partnerships (RPPs) and to reinstate the RPP program or some
variation thereof that will advance the use of research in partnerships
that include educators, policymakers, education research organizations,
and others committed to applying evidence to improve education.''
We appreciate your attention to this matter.
Sincerely.
[This statement was submitted by Steve Fleischman, Partner, Change
Dynamics, LLC and Jim Kohlmoos, Principal, EDGE Partners, LLC.]
______
Prepared Statement of the Institute of Museum and Library Services
The Natural Science Collections Alliance appreciates the
opportunity to provide testimony in support of fiscal year 2020
appropriations for the Institute of Museum and Library Services (IMLS).
We encourage Congress to reject the President's request to eliminate
the IMLS and to instead provide IMLS with at least $257 million in
fiscal year 2020.
The Natural Science Collections Alliance is a non-profit
association that supports natural science collections, their human
resources, the institutions that house them, and their research
activities for the benefit of science and society. Our membership
consists of institutions that are part of an international network of
museums, botanical gardens, herbaria, universities, and other
institutions that contain natural science collections and use them in
research, exhibitions, academic and informal science education, and
outreach activities.
Museums strengthen our national economy. They provide core
educational and outreach programs to engage the public and contribute
more than $50 billion to the U.S. economy every year, support more than
726,000 American jobs, and generate $12 billion in tax revenue. It is
of paramount importance to invest in museums given the enormous
economic and educational contributions of these institutions.
IMLS provides funding that helps museums with public outreach
programs and strengthens the capacity of museums to improve the well-
being of their communities. Its Office of Museum Services awards grants
to museums for preserving and digitizing collections, educational
programming, professional development, and community outreach. In
addition to providing grants, the agency conducts critical research,
facilitates State and regional collaboration, and supports national
initiatives that benefit museums. Implementing the President's request
to eliminate IMLS is irresponsible and will lead to a loss of critical
data, resources, and infrastructure the Nation requires to chronicle
our shared experiences, advance research, and provide educational
opportunities for people of all ages.
Investments in IMLS and its efforts to support scientific and
educational advances in science collections, such as those that
comprise natural history museums, are in the national interest.
Scientific collections contribute to improved public well-being and
national economic security. This important documentation of our
Nation's heritage is irreplaceable; it cannot be reconstructed or
reassembled at a later date. Specimens collected decades or centuries
ago are increasingly used to develop and validate models that explain
how species, including viruses, parasites, and pathogens have dispersed
around the world, as well as how and when they might infect humans now
and in the future.
The IMLS is the primary Federal agency that supports public
education programs at museums and an important source of funding for
preserving scientific collections. Investments in IMLS programs that
support natural science collections research and education are
essential if we are to maintain our global leadership in innovation.
Scientific collections enable us to tell the story of life on
Earth. There are more than 1,600 biological collections in the United
States, with a significant number of these constituting the research
and education resources of our Nation's natural history museums. These
resources are the result of more than 200 years of scientific
investigation, discovery, and inventory of living and fossil species.
Scientists have collected, studied, and curated more than one billion
specimens within those collections. This work is on-going as new
questions continue to be asked. The institutions that care for
scientific collections are important research infrastructure for the
United States that also provide students with hands-on training
opportunities.
Natural science collections advance scientific research and
education that informs actions to improve public health, agricultural
productivity, natural resource management, biodiversity conservation,
artistic and creative pursuits, and American economic innovation more
generally. Current research involving natural science collections also
contributes to the development of new cyberinfrastructure, data
visualization tools, and improved data management practices. A few
examples of how scientific collections have saved lives, enhanced food
production, and advanced scientific discovery include:
--Scientists used museum specimens in U.S. collections to gather data
on the distribution of the mosquito Culex quadrofaciatus, which
is known to carry West Nile Virus and other pathogens. This
allowed them to model the distribution of the mosquito under
different climate scenarios to predict regions to which the
species might spread. These models can assist public health
officials working to prepare for disease outbreaks.
--Citrus bacterial canker disease wreaks havoc on fruit crops in
Florida. Using plant specimens collected a century ago,
scientists have analyzed the bacterium and traced its source.
Knowledge of how the bacteria spreads allows scientists to
develop effective control methods and to protect the U.S.
citrus industry.
--In 2018, researchers from Boston University documented Tau proteins
in the brains of fluid preserved museum specimens of Downy
Woodpecker (Dryobates pubescens). These proteins are also found
in humans with traumatic brain injuries. Because of the life
history traits of woodpeckers, the researchers argue these
birds may have evolved a level of resistance to traumatic head
injuries that could offer insights for potential treatments of
traumatic brain injury in humans.
Please support funding of at least $257 million for IMLS for fiscal
year 2020.
Thank you for your thoughtful consideration of this request and for
your prior support of the Institute of Museum and Library Services.
[This statement was submitted by John Bates, Ph.D., President,
Natural Science Collections Alliance.]
______
Prepared Statement of the International Foundation for Gastrointestinal
Disorders
fiscal year 2020 l-hhs appropriations recommendations
_______________________________________________________________________
--At least $41.6 billion in program level funding for the National
Institutes of Health (NIH).
--Proportional funding increase for the National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK).
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, as you work with your colleagues to develop the
fiscal year 2020 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, cyclic vomiting syndrome, abdominal phrenic
dyssynergia (APD), and pelvic floor dysfunction. The costs associated
with these diseases range from $25-$30 billion annually; economic costs
are also reflected in work absenteeism and lost productivity.
national institutes of health
Strengthening the Nation's biomedical research enterprise through
NIH fosters economic growth and sustains innovations that enhance the
health and well-being of the American people. Functional GI disorders
are prevalent in about 1 in 4 people in the U.S., accounting for 40
percent of GI problems seen by medical providers. NIDDK supports basic,
clinical, and translational research on aspects of gut physiology
regulating motility and supports clinical trials through the Motility
and Functional GI Disorders Program.
Several of NIH's crosscutting initiatives are currently advancing
science in meaningful ways for patients with gastrointestinal
disorders. The Stimulating Peripheral Activity to Relieve Conditions
(SPARC) Initiative supports research on the role that nerves play in
regulating organ function. Methods and medical devices that modulate
these nerve signals are a potentially powerful way to treat many
chronic conditions, including gastrointestinal and inflammatory
disorders. The Human Microbiome Project is also unlocking important
discoveries that will help to inform and advance emerging treatment
options for many in the community.
patient perspective
I would like to share with you the patient perspective of one of
our members, Brittany Aliano from New York. Brittany suffers from an
unknown disorder of the GI-tract, and her experience exemplifies why
the community drastically needs increased medical research,
professional education, and public awareness.
``My primary diagnosis is Abdomino-Phrenic Dyssynergia (APD). When
a normal person swallows, the diaphragm is supposed to relax (to
accommodate the stomach filing with food) and the abdominals are
supposed to contract (to keep all the abdominal contents inside the
body). Unfortunately, in APD the opposite happens. So, when I eat, my
diaphragm contracts and pushes all my organs out of my body. My abs
also relax, resulting in a ``pseudo-pregnancy.'' This happens every
time I eat, so it is worse at the end of the day.
I have had to fight extremely hard to get medical care in the U.S.,
because most American doctors are not familiar enough with functional
gastrointestinal disorders. In fact, I had to leave the country twice
to get treatment! We need more awareness, research, and education in
America surrounding these disorders.
No one should have to suffer like I have or go abroad to get care.
We need more research and awareness stateside!"
Thank you for the opportunity to submit our community's
perspective, as you consider appropriations priorities for fiscal year
2020. We look forward to continuing to work with you on these critical
issues.
[This statement was submitted by Ceciel T. Rooker, President,
International Foundation for Gastrointestinal Disorders.]
______
Prepared Statement of the Interstitial Cystitis Association
summary of recommendations for fiscal year 2020
_______________________________________________________________________
--Provide $1.1 Million for the IC Education and Awareness Program and
the IC Epidemiology Study at the Centers for Disease Control
and Prevention (CDC)
--Provide $41.6 Billion for the National Institutes of Heatlh (NIH)
and Proportional Increases Across All Institutes and Centers
--Support NIH Research on IC, including the Multidisciplinary
Approach to the Study of Chronic Pelvic Pain (MAPP) Research
Network and Chronic Pain
_______________________________________________________________________
Thank you for the opportunity to present the views of the
Interstitial Cystitis Association (ICA) regarding interstitial cystitis
(IC) public awareness and research. ICA was founded in 1984 and is the
only nonprofit organization dedicated to improving the lives of those
affected by IC. The Association provides an important avenue for
advocacy, research, and education. Since its founding, ICA has acted as
a voice for those living with IC, enabling support groups and
empowering patients. ICA advocates for the expansion of the IC
knowledge-base and the development of new treatments. ICA also works to
educate patients, healthcare providers, and the public at large about
IC.
IC is a condition that consists of recurring pelvic pain, pressure,
or discomfort in the bladder and pelvic region. It is often associated
with urinary frequency and urgency. This condition may also be referred
to as painful bladder syndrome (PBS), bladder pain syndrome (BPS), and
chronic pelvic pain (CPP). It is estimated that as many as 12 million
Americans have IC symptoms. Approximately two-thirds of these patients
are women, though this condition does severely impact the lives of as
many as 4 million men. IC has been seen in children and many adults
with IC report having experienced urinary problems during childhood.
However, little is known about IC in children, and information on
statistics, diagnostic tools and treatments specific to children with
IC is limited.
The exact cause of IC is unknown and there are few treatment
options available. There is no diagnostic test for IC and diagnosis is
made only after excluding other urinary/bladder conditions. It is not
uncommon for patients to experience one or more years delay between the
onset of symptoms and a diagnosis of IC. This is exacerbated when
healthcare providers are not properly educated about IC.
The effects of IC are pervasive and insidious, damaging work life,
psychological well-being, personal relationships, and general health.
The impact of IC on quality of life is equally as severe as rheumatoid
arthritis and end-stage renal disease. Health-related quality of life
in women with IC is worse than in women with endometriosis, vulvodynia,
and overactive bladder. IC patients have significantly more sleep
dysfunction, and higher rates of depression, anxiety, and sexual
dysfunction.
Some studies suggest that certain conditions occur more commonly in
people with IC than in the general population. These conditions include
allergies, irritable bowel syndrome, endometriosis, vulvodynia,
fibromyalgia, and migraine headaches. Chronic fatigue syndrome, pelvic
floor dysfunction, and Sjogren's syndrome have also been reported.
ic public awareness and education through cdc
ICA recommends a specific appropriation of $1.1 million in fiscal year
2020 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 shifted the focus of the IC program to an epidemiology study
and away from education and awareness. The IC community is concerned
that focusing solely on an epidemiology study instead of a renewed
focus on education and awareness activities is detrimental to patients
and their families. We have tried to speak with the CDC on
collaborating along with the epidemiology study, however they would not
meet with us. This is concerning because of the specific language that
Congress has included for education and awareness activities through
the program. We know that CDC has not received as generous increases as
NIH over the past few fiscal years, but it is important the CDC
supports both critical components of the IC Program. The CDC IC
Education and Awareness Program is the only Federal program dedicated
to improving public and provider awareness of this devastating disease,
reducing the time to diagnosis for patients, and disseminating
information on pain management and IC treatment options. ICA urges
Congress to provide funding for IC education and awareness in fiscal
year 2020.
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.
ic research through the national institutes of health
ICA recommends a funding level of $41.6 billion for NIH in fiscal year
2020. ICA also recommends continued support for IC research
including the MAPP Study administered by NIDDK.
The National Institutes of Health (NIH) maintains a robust research
portfolio on IC with the National Institute of Diabetes and Digestive
and Kidney Diseases (NIDDK) serving as the primary Institute for IC
research. Research currently underway holds great promise to improving
our understanding of IC and developing better treatments and a cure.
The NIDDK Multidisciplinary Approach to the Study of Chronic Pelvic
Pain (MAPP) Research Network studies the underlying causes of chronic
urological pain syndromes, including epidemiology. The MAPP Study has
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.
the patient perspective
IC is a tough disease to diagnose, and it is one of the most
challenging things to deal with, finding a Dr. that specializes in IC
that can help diagnose and treat. I can't stress enough how important
finding the right Dr. is. IC patients need a Dr. who understands and is
willing to go along with them on this long, frustrating, painful and
confusing road. I have found strength through having this that I never
knew I had, strength to keep going when all treatments so far have
failed me.
There are a small number of treatments available for managing IC
symptoms, but they only work on a small percentage of patients. I have
tried those treatments and some drugs that ``might'' help. I manage my
diet, take lots of supplements and have to see all kinds of Doctors
now. I have six! That includes holistic medicine doctors, physical
therapists, and acupuncturist. That's along with my regular MD,
Urologist and two different gynecologists. This is what my life has
become. The life of an IC patient. I deal with one or more symptoms of
IC EVERY SINGLE DAY. Some days definitely better than others, but every
single day. It affects my life in so many ways. Work, social, travel
and my intimate relationships. I never know how I'm going to feel from
one day to the next. Anxiety and fear included.--Anonymous
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 Johnson & Johnson
On behalf of Johnson & Johnson's 135,000 global employees, I am
pleased to provide written testimony to the House Appropriations
Subcommittee on Labor, Health and Human Services, Education and Related
Agencies in support of increased funding for the National Institutes of
Health (NIH) fiscal year 2020 budget.
Robust funding for NIH is necessary to ensure that the agency has
the continued ability to fuel innovation in medical research, improving
the trajectory of healthcare in the United States and around the world.
This funding request also represents what is required to remain
competitive in addressing emerging health threats confronting the
United States and to encourage the pursuit of innovative solutions
essential in addressing these increasingly complex challenges.
As a physician and scientist, I have dedicated much of my life to
translating basic scientific research into medical advances. In my
current role as Global Head of Johnson & Johnson External Innovation
and as a board member of Research!America, the Nation's largest not-
for-profit public education and advocacy alliance, and the American
Association for Cancer Research, the Nation's largest and oldest cancer
research organization, I am deeply aware of the value of our Nation's
investment in research.
In the United States, the majority of medical research into the
root causes of disease is publicly funded by the NIH through research
grants to more than 2,500 institutions across the country. The
invaluable research conducted by NIH-funded investigators represents
the building blocks of scientific discovery, enabling healthcare
companies to expand upon this research to transform scientific findings
into the breakthrough healthcare products of tomorrow. Furthermore, NIH
research often makes possible the business case for the enormous, at-
risk investment of the private funding and effort it requires to
discover, develop and guide an important new medical treatment through
the regulatory process and to patients in need.
At Johnson & Johnson, we are committed to creating life-enhancing
innovations and to producing value through partnerships that will
profoundly change the trajectory of health for humanity. To that end,
in 2018 Johnson & Johnson invested nearly $10.8 billion in research and
development across our pharmaceutical, consumer and medical device
companies. Our teams of scientists work tirelessly to accelerate the
translation of scientific discoveries into meaningful solutions for
patients in need. Much of our work, and that of scientists across the
industry, would not be possible without the constant progression of the
understanding of underlying disease biology--precisely the type of
research funded by the NIH.
In addition, Johnson & Johnson recognizes the crucial importance of
early-stage companies and the critical role NIH plays in supporting
these small businesses through Small Business Innovation Research
(SBIR) and Small Business Technology Transfer (STTR) funding. At the
Johnson & Johnson Innovation--JLABS incubator sites, we support the
life sciences ecosystem by helping entrepreneurs and scientists realize
their dreams of creating healthcare solutions that improve lives by
identifying and nurturing highly innovative ideas in areas of
potentially disruptive, cutting-edge research, which may lead to novel
platforms, products or technologies. These are advances that the
scientific community could only imagine several years ago, yet they are
becoming a reality today through the support of public-private
partnerships like these.
The work of the NIH is tied not only to innovation and the vitality
of the life sciences, but also to the health of our national economy.
NIH is the lifeblood of basic research for America, and is also an
incredible economic engine. In fiscal year 2018, NIH research funding
directly and indirectly supported over 433,000 jobs and spurred nearly
$74 billion in new economic activity. Moreover, the pace of medical
research must keep up with the aging of our population. There is an
urgent need, both on the individual and socioeconomic level, for
strategies to prevent illnesses associated with aging or lifestyle.
Diseases such as Alzheimer's, ALS, diabetes, cancer and heart disease
threaten to overwhelm our healthcare system in a matter of years with
enormous costs of care if we do not find ways to prevent, intercept,
treat or cure them.
Investments in medical research at the end of the 20th century by
the Federal Government and private life sciences companies, combined
with the work of industry and NIH-funded investigators across the
country, have produced fundamental scientific advances, vast new
datasets and increasingly sophisticated areas of scientific research.
As the NIH is working on projects in areas like precision medicine,
gene therapy and vaccines to prevent infectious diseases like Ebola,
pandemic influenza and HIV, there has never been a more critical and
promising time to work in medical research.
Johnson & Johnson believes that fully and consistently funding the
NIH represents a commitment to fueling innovation in medical research.
It is also a commitment to our communities by advancing science to
match medical need, to our current and future generations of scientists
by stimulating the life sciences ecosystem, and to the prosperity of
our Nation as a worldwide leader in medical research. Sustainable,
robust investment is needed to strengthen this research and to realize
its benefits for improving people's lives and reducing the burden and
associated costs of today's major diseases in the United States and
around the world.
[This statement was submitted by William N. Hait, MD, PhD, Global
Head,
Johnson & Johnson External Innovation.]
______
Prepared Statement of LEARN
The LEARN Coalition (LEARN) would like to thank the Subcommittee on
Labor, Health and Human Services, Education and Related Agencies (L-
HHS-ED) for soliciting the views and recommendations of public
witnesses on fiscal year 2020 funding. LEARN consists of 40 leading
research colleges of education across the country which support
critical investments in research aimed at advancing the scientific
understanding of learning and development. We advocate for greater
funding for these priorities across all Federal agencies, including the
Institute of Education Sciences (IES), the National Institute of Child
Health and Human Development (NICHD), and the National Institute of
Mental Health (NIMH).
LEARN urges the subcommittee to make significant investments in key
education research programs as part of the fiscal year 2020
appropriations process. These investments are critical if we are to
advance the knowledge and practice needed by early childhood, K12 and
postsecondary education in our country. We applaud and are encouraged
by the significant increases provided by the House Subcommittee on
Labor, Health and Human Services, Education and Related Agencies (L-
HHS-ED) for these initiatives and urge additional support for critical
research programs. Specifically LEARN is requesting $670 million for
IES. Within IES, LEARN would recommend $210 million for the Research,
Development and Dissemination (R, D and D) line item and $61 million
for the National Center for Special Education Research (NCSER). At the
National Institutes of Health, we would urge the Subcommittee to
provide $1.606 billion and $1.994 billion for NICHD and NIMH
respectively.
In addition to our focus on these individual programs, we would be
remiss if we did not highlight the importance of the initial work to
raise non-defense discretionary (NDD) funding for fiscal year 2020 and
fiscal year 2021. As you know, NDD funding would be cut by $55 billion
compared to fiscal year 2019 spending levels under the Budget Control
Act. We hope this early work by the leaders of the House Budget and
Appropriations Committees brings about an eventual agreement by the
House, Senate and Administration to increase NDD spending over fiscal
year 2019 levels. Absent a bipartisan agreement to increase the non-
defense discretionary spending caps, we fear investments in education
research would face crippling cuts. Such an agreement would allow for
significant investments in education.
While advocating for these programmatic and budget cap increases,
we also want to provide the Subcommittee with a real-world picture of
the impact of education research funding. Recent IES and other agency
funding for education research has produced critical gains in knowledge
and understanding of evidence-based practice. Examples of the impact of
these dollars include the development and adoption of a statewide
approach to math instruction in Florida that has also been adopted by
other States and localities, both urban and rural. This curriculum
allows students to receive specialized math instruction through a
teacher and teaching style with which they connect. Another effort
funded by IES is the implementation of a reading curriculum that has
shown such positive results for young children that it is now being
adopted as a statewide literacy approach by a State legislature.
Lastly, NCSER funding has helped lead to the adoption of positive
behavior intervention and supports, a behavior management approach that
is designed to help children with disabilities and others reach their
academic potential without the disruption that behavior issues can
cause.
With respect to our funding recommendations, our priority is an
increase for IES and the R, D and D and NCSER line items. 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. Increased
funding for education research is vital to the implementation of major
Federal education programs funded under the Elementary and Secondary
Education Act, the Individuals with Disabilities Education Act and the
Higher Education Act, as all of these statutes require a focus on the
use of evidence-based approaches.
With the importance of developing reliable knowledge and evidence-
based practices, LEARN is requesting $670 million for IES overall and
$210 million for the Research, Development, and Dissemination line item
within IES, in order to keep up with growth and inflation. The funding
for research in special education, through the National Center for
Special Education Research (NCSER), also should be increased by $5
million, to $61 million, still well below its fiscal year 2010
historically high level of $71.1 million. These increases are
critically needed as only one out of every 10 applications are funded
by IES, due to budget constraints, presenting lost opportunities to
further strengthen evidence-based practice across the education
spectrum.
NICHD and NIMH also fund critical education research efforts. NICHD
is essential to education research as it examines brain functions and
the impact of different educational services on learning and
development. LEARN supports a similar percentage increase in NICHD
funding to our request for IES--in line with growth and inflation--to
bring the total to $1.606 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, LEARN supports a similar percentage increase in
funding for NIMH over fiscal year 2019 enacted levels, bringing the
total funding to $1.994 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 optimizing learning and
development.
Thank you for the opportunity to submit testimony urging increases
for IES, NICHD and NIMH. LEARN happy to respond to any questions that
result from your review of this testimony.
The Members of LEARN are:
Boston University--Wheelock College of Education and Human
Development
Boston College--Lynch School of Education
Columbia University--Teachers College
Indiana University--School of Education
Iowa State University--College of Human Sciences
Georgia State University--College of Education & Human Development
John Hopkins University--School of Education
Louisiana State University--College of Human Sciences and Education
North Carolina State University--College of Education
Oklahoma University--Jeannine Rainbolt College of Education
Purdue University--College of Education
Penn State University--College of Education
Syracuse University--School of Education
Rutgers University--Graduate School of Education
Texas A&M University--College of Education and Human Development
The Ohio State University--College of Education and Human Ecology
University of Arizona--School of Education
University of Alabama--College of Education
University of California--Santa Barbara Gevirtz Graduate School of
Education
University of Central Florida College of Community Innovation and
Education
University of Connecticut--Neag School of Education
University of Florida--College of Education
University of Georgia--School of Education
University of Houston--College of Education
University of Illinois Urbana--Champaign College of Education
University of Kansas--School of Education
University of Kentucky--School of Education
University of Maryland College Park--College of Education
University of Minnesota--College of Education and Human Development
University of Missouri--College of Education
University of North Carolina--School of Education
University of Oregon--College of Education
University of Pittsburgh--School of Education
University of Southern California--Rossier School of Education
University of South Carolina--College of Education
University of South Dakota--School of Education
University of Vermont--College of Education and Social Services
Vanderbilt University--Peabody College of Education and Human
Development
Virginia Commonwealth University--School of Education
University of Wisconsin- Madison--School of Education
______
Prepared Statement of the Leukemia & Lymphoma Society
The Leukemia & Lymphoma Society (LLS) appreciates the opportunity
to comment on the fiscal year 2020 appropriations for the National
Institutes of Health (NIH) and the National Cancer Institute (NCI). LLS
applauds the Committee for its consistent leadership in supporting
biomedical research and urges Congress to provide at least $41.584
billion for the National Institutes of Health and at least $6.522
billion for the National Cancer Institute, including $30 million to
implement the Childhood Cancer Survivorship, Treatment, Access, and
Research (STAR) Act (Public Law 115-180) and at least $50 million to
implement the childhood cancer research initiative outlined in the
President's fiscal year 2020 budget proposal.
LLS is the world's largest voluntary health organization dedicated
to fighting blood cancer. Each year, over 170,000 Americans are newly
diagnosed with blood cancers, accounting for nearly 10 percent of all
newly diagnosed cancers in the United States. The mission of LLS is to
find cures for leukemia, lymphoma, Hodgkin's disease and myeloma, and
improve the quality of life of patients and their families. LLS is also
committed to ensuring that blood cancer patients have sustainable
access to quality, affordable, coordinated healthcare. Since our
founding in 1949, LLS has invested more than $1.2 billion in
groundbreaking research in hematologic disease, funding nearly all of
today's most promising advances. LLS is also the leading source of
free, highly specialized blood cancer information, education and
support for patients, survivors, families and healthcare professionals,
responding to over 1,500 inquiries each month.
supporting groundbreaking advances in blood cancer treatments
As an organization that has funded more than $1.2 billion in cancer
research since its founding, LLS knows firsthand how crucial sustained
investments in biomedical research are to tackling disease. The reach
of NIH and NCI extend beyond the NIH campus in Bethesda, Maryland,
supporting research at universities, academic centers and medical
centers across the United States.
The importance of this work cannot be overstated, as consistent
investments in biomedical research are leading to scientific advances
in precision medicine, genomics and immunotherapy, which continue to
transform the landscape of cancer care. In 2017 and 2018, the FDA
approved an unprecedented 39 blood cancer medications due to
groundbreaking research and innovation. This boom in blood cancer drugs
is expected to continue.
While incredible progress has been made, particularly in recent
years, challenges in treating blood cancer remain. More than 1.3
million Americans are currently living with or in remission from a
blood cancer, and every three minutes, someone in the United States is
diagnosed with a blood cancer. However, more than one-third of blood
cancer patients still do not survive 5 years after their initial
diagnosis. For the last 50 years, every major medical breakthrough in
cancer can be traced back to NIH and NCI; LLS and the cancer community
continue to rely on the vision and leadership of the NIH and NCI to
fuel further progress in treating blood cancer.
nih and nci as partners in research innovation
LLS's research portfolio drives research in areas of unmet medical
need and strives to bridge the gap between academic discovery and drug
development. We are deeply committed to taking a leading role in the
development of precision medicine-based treatments. LLS launched a
master protocol in 2016 for biomarker-based treatment of acute myeloid
leukemia (AML). This master protocol--the Beat AML Master(r) Trial--is
a multi-drug, multi-site precision medicine approach testing several
novel targeted therapies.
LLS recognized an acute research need in AML patients; AML is a
complex grouping of more than ten different prominent subtypes of blood
cancer, and many other rare mutations. Each year in the United States,
approximately 21,000 patients are diagnosed with AML and more than
10,000 lives are lost to this disease. Through the Beat AML Master(r)
Trial, for which LLS holds the U.S. investigational new drug
application (IND), LLS has successfully collaborated with multiple
medical institutions, pharmaceutical companies and the FDA to launch
the first-ever precision medicine clinical trial in a blood cancer.
Under our master protocol--a trial structure that allows testing of
more than one therapy under an 'umbrella' protocol--all newly diagnosed
AML patients age 60 years and older are eligible for participation.
Each patient who consents receives a genomic screening upon diagnosis,
and a sample from a bone marrow biopsy is sent for a rapid analysis by
a genomic provider. Based on the results, the patient is assigned to
receive personalized therapy on one of several sub-studies to the
protocol, each with its own consent form and with arm-specific
clinical/correlative endpoints, but all sharing the goal of improving
outcomes in patients.
The trial currently includes more than 10 active treatment arms,
each based on the most prominent subsets of AML and testing one of the
investigational therapies. As with any research endeavor, the goal is
to develop and accelerate treatments and cures for patients. In this
case, our hope is that one or more innovative treatments will emerge
from this trial, which will advance cures for AML patients.
Bolstered by the success of the adult Beat AML Master(r) Trial, LLS
is setting its sights on changing the paradigm for drug development in
children with acute leukemia. LLS plans to launch a new pediatric
clinical trial that looks to establish the infrastructure to rapidly
evaluate novel targeted therapies or novel combinations in children and
young adults with leukemia, with the ultimate goal of speeding approval
of new agents. This trial--part of the broader LLS Children's
Initiative--will utilize key aspects of NCI's infrastructure and
resources, which will be critical for the success of this effort.
Leadership from NCI will also serve on the Scientific Steering
Committee for LLS's trial, providing important expertise and guidance
to our efforts.
The LLS pediatric trial seeks to be the leukemia complement to the
NCI Pediatric MATCH program, which takes a precision medicine approach
for patients with solid tumors that are not responding to treatment.
NIH and NCI have been invaluable partners in this endeavor, and LLS
plans to launch this new precision medicine clinical trial for children
by the end of 2019.
requests for fiscal year 2020 appropriations
Based on the vital importance of scientific research, LLS requests
the following appropriations for fiscal year 2020:
National Institutes of Health (NIH).--To continue the progress that
has led to medical breakthroughs for blood cancer patients, NIH needs
an increased, sustainable Federal investment. LLS urges Congress to
provide at least $41.584 billion for the National Institutes of Health
in fiscal year 2020, a $2.5 billion increase over fiscal year 2019.
National Cancer Institute (NCI).--Despite its growing budget over
recent years, NCI's resources are being stretched by an increasing
number of funding applications and other priorities. The number of
proposals submitted to NCI increased 46 percent from fiscal year 2013
to fiscal year 2018, far exceeding the proposal submission growth seen
by NIH as a whole, which rose by 11 percent in that same timeframe. To
meet its obligations while continuing to support the most promising
research, last year, NCI imposed a 5 percent operating budget cut
across the Institute.
Each fiscal year, NCI is required to submit to Congress a
Professional Judgment Budget to outline the optimum funding needed to
make the most rapid progress against cancer. For fiscal year 20, the
Professional Judgment Budget for the NCI requests a $378 million
increase over fiscal year 2019 funding levels. These new resources
would be used for initiatives aimed at understanding the mechanisms of
cancer, preventing cancer, detecting and diagnosing cancer, treating
cancer, advancing public health in cancer and strengthening the cancer
research enterprise. Consistent with NCI's fiscal year 2020
Professional Judgment Budget, LLS encourages Congress to provide at
least $6.522 billion for the National Cancer Institute in fiscal year
2020.
Childhood Cancer Programs.--The Childhood Cancer Survivorship,
Treatment, Access, and Research (STAR) Act, the most comprehensive
childhood cancer legislation considered by Congress, was unanimously
passed last year. This important legislation, which was fully funded
for fiscal year 2019, authorizes $30 million in new resources for the
NIH and Centers for Disease Control (CDC) to expand opportunities for
childhood cancer research, improve efforts to identify and track
childhood cancer incidences and enhance the quality of life for
childhood cancer survivors. LLS was also heartened by the
Administration's proposal for a $500 million investment in childhood
cancer research over the next decade. Within NCI's fiscal year 2020
appropriation, LLS urges Congress to provide $30 million to fully fund
the Childhood Cancer STAR Act (Public Law 115-180) and at least $50
million to fully fund the childhood cancer research initiative outlined
in the President's fiscal year 2020 budget proposal.
conclusion
LLS appreciates the leadership and support of the Subcommittee and
its priority setting activities. We look forward to continuing to work
with Congress on policies that advance cures and break down barriers to
healthcare access for blood cancer patients and survivors.
______
Prepared Statement of the Low Income Home Energy Assistance Program
The Federal Low Income Home Energy Assistance Program (LIHEAP) \1\
is the cornerstone of government efforts to help needy seniors and
families stay warm and avoid hypothermia in the winter, as well as stay
cool and avoid heat stress (even death) in the summer. LIHEAP is an
important safety net program for low-income, unemployed and
underemployed families struggling in this economy. LIHEAP has helped
approximately 6 million households afford their energy bills in fiscal
year 2019.\2\ In light of the crucial safety net function of this
program in protecting the health and well-being of low-income seniors,
consumers with disabilities, and families with very young children, we
respectfully request that LIHEAP be funded at no less than $4.7 billion
for fiscal year 2020.
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\1\ 42 U.S.C. Sec. Sec. 8621 et seq.
\2\ Testimony of the National Energy Assistance Directors'
Association, House Subcommittee on Labor, Health and Human Services and
Education and Related Agencies (April 8, 2019).
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the urgent need for adequate liheap appropriations
Funding LIHEAP at no less than $4.7 billion for the regular program
in fiscal year 2020 would restore LIHEAP funding to fiscal year 2011
levels and will help protect the health and well-being of an estimated
additional one million fragile households according to the National
Energy Assistance Directors' Association.\3\
---------------------------------------------------------------------------
\3\ Testimony of the National Energy Assistance Directors'
Association, House Subcommittee on Labor, Health and Human Services and
Education and Related Agencies (April 8, 2019).
---------------------------------------------------------------------------
One indicator of the growing need for energy assistance is the
growing number of disconnections. In States like Iowa that track
utility credit and collections information, the involuntary
disconnection of residential gas and electric customers increased by
123 percent between 1999 and 2018. For the year ending December 1999,
there were less than 25,000 involuntary disconnections in Iowa. For the
calendar year ending December 2018 the disconnections had more than
doubled to well over 55,000. The increase over the long term in
disconnection of vital home energy and utility services, as seen in
Iowa, may be observed in States around the country that collect and
report such information, including Ohio, Pennsylvania, California, and
Massachusetts. For very poor, struggling households, LIHEAP helps bring
the cost of these essential heating and cooling services within reach
for an estimated 6 million low-income households and helps them stay
connected.
Energy bills are not affordable for struggling, low-income
households. The average LIHEAP household in 2015 devoted over 8 percent
of total household income just for home energy services, compared to an
average of under 4 percent for all U.S. households. Home energy is also
more expensive during prolonged periods of extreme temperatures because
households use more fuel to keep the home at safe temperatures.
Prolonged colder than normal temperatures, such as the sharp cold wave
that resulted in 22 deaths and affected a wide swath of the country
January to March 2019 \4\ can result in an unexpected, increased use of
heating fuels. Likewise, prolonged hot temperatures can result in an
increased need for air conditioning, particularly for consumers with
certain medical conditions.\5\
---------------------------------------------------------------------------
\4\ See e.g., ``Extreme cold in the Midwest led to high power
demand and record natural gas demand,'' U.S. Energy Information
Administration, Today in Energy (Feb. 26, 2019) available at https://
www.eia.gov/todayinenergy/detail.php?id=38472; ``January--February 2019
North American cold wave'', https://en.wikipedia.org/wiki/
January%E2%80%93February_2019_
North_American_cold_wave.
\5\ Lynne Page Snyder and Christopher Baker, Affordable Home Energy
and Health: Making the Connections, AARP Public Policy Institute (June
2010) at pp.10-11, available at https://www.aarp.org/money/low-income-
assistance/info-06-2010/2010-05-consumer.html.
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Yet, struggling low-income households are at risk of disconnection
from essential utilities because they do not have the savings or income
on hand to afford their energy bills. The Federal Reserve finds that 4
in 10 households report that they would have difficulty with an
unexpected expense of $400 and that 3 in 10 households are either
unable to pay their bills or are a modest financial setback from
hardship.\6\ A growing body of research is documenting the rise in
household income volatility (the dramatic fluctuation of income over
time) and the impacts on household well-being.\7\ Approximately one-
third of households experience income volatility \8\ and irregular work
schedules were the leading cause of volatility.\9\ When income is hard
to predict from week-to-week and month-to-month, paying for necessities
such utility service can be difficult, if not impossible without help
from programs like LIHEAP. Households experiencing income volatility
tend to turn to more expensive alternative financial services products
such as payday loans.\10\ Analysis of material hardship for low and
moderate income consumers experiencing income volatility found much
higher rates of skipped bills, skipped medical care, skipped housing
payments and food insecurity.\11\
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\6\ Board of Governors of the Federal Reserve, Report on the
Economic Well-Being of U.S. Households in 2018 (May 2019) at p.21,
available at https://www.Federalreserve.gov/consumerscommunities/files/
2018-report-economic-well-being-us-households-201905.pdf.
\7\ See e.g., Federal Reserve Survey of Household Economics and
Decisionmaking reports available at https://www.Federalreserve.gov/
consumerscommunities/shed.htm; The Aspen Institute Expanding Prosperity
Impact Collaborative (EPIC) series on the issue of income volatility
available at http://www.aspenepic.org/epic-issues/income-volatility/;
Pew Charitable Trusts, How Income Volatility Interacts with American
Families; Financial Security (March 9, 2017) available at https://
www.pewtrusts.org/en/research-and-analysis/issue-briefs/2017/03/how-
income-volatility-interacts-with-american-families-financial-security.
\8\ Daniel Schneider and Kristen Harknett, Income Volatility in the
Service Sector: Contours, Causes, and Consequences (July 2017) at p.3,
available at http://www.aspenepic.org/epic-issues/income-volatility/
issue-briefs-what-we-know/issue-brief-income-volatility-service-sector/
; Board of Governors of the Federal Reserve, Report on the Economic
Well-Being of U.S. Households in 2018 (May 2019) at p.2, available at
https://www.Federalreserve.gov/consumerscommunities/files/2018-report-
economic-well-being-us-households-201905.pdf.
\9\ ``Income Volatility: A Primer (May 1, 2016) The Aspin Institute
Financial Security Program and EPIC at p.5, available at https://
www.aspeninstitute.org/publications/income-volatility-a-primer/; Daniel
Schneider and Kristen Harknett, Income Volatility in the Service
Sector: Contours, Causes and Consequences (July 2017) at p.3, available
at http://www.aspenepic.org/epic-issues/income-volatility/issue-briefs-
what-we-know/issue-brief-income-volatility-service-sector/, Asset
Funders Network, Income Volatility: Why it Destabilizes Working
Families and How Philanthropy Can Make a Difference at p.6, available
at https://assetfunders.org/resource/afn-income-volatility-2017/.
\10\ Daniel Schneider and Kristen Harknett, Income Volatility in
the Service Sector: Contours, Causes and Consequences (July 2017) at p.
9, available at http://www.aspenepic.org/epic-issues/income-volatility/
issue-briefs-what-we-know/issue-brief-income-volatility-service-sector/
(almost a quarter of consumers reporting week-to-week volatility report
using payday lenders).
\11\ Stephen Roll, David S. Mitchell, Krista Holub et al.,
Responses to and Repercussions from Income Volatility in Low- and
Moderate-Income Households: Results from a National Survey, Aspen
Institute EPIC, Center for Social Development, Intuit Tax & Financial
Center (Dec. 2-17) at pp 6-7, available at https://
www.aspeninstitute.org/publications/responses-repercussions-income-
volatility-low-moderate-income-households-results-national-survey/.
---------------------------------------------------------------------------
LIHEAP protects the health and safety of the frail elderly, the
very young and those with chronic health conditions, such as diabetes,
that increase susceptibility to temperature extremes. LIHEAP assistance
also helps keep families together by keeping homes habitable during the
bitter cold winter and sweltering summers.
LIHEAP Is a Critical Safety Net Program for the Elderly, the Disabled
and Households with Young Children
Dire Choices and Dire Consequences: Recent national studies have
documented the dire choices low-income households face when energy
bills are unaffordable. Because adequate heating and cooling are tied
to the habitability of the home, low-income families will go to great
lengths to pay their energy bills. According to the US Energy
Information Agency (EIA), one in three households face challenges
meeting energy needs, with over 20 percent forgoing basic necessities
to pay their energy bills, over 10 percent report keeping their home at
unsafe temperatures and almost 15 percent received a disconnection
notice.\12\ EIA's analysis is consistent with other studies showing
that low-income households faced with unaffordable energy bills cut
back on necessities such as food, medicine and medical care.\13\ The
U.S. Department of Agriculture has documented the connection between
low-income households, especially those with elderly persons,
experiencing very low food security and heating and cooling seasons
when energy bills are high.\14\ A pediatric study in Boston documented
an increase in the number of extremely low weight children, age 6 to 24
months, in the 3 months following the coldest months, when compared to
the rest of the year.\15\ It is shocking that in this wealthy Nation,
so many face heat-or-eat choices where families go without food during
the winter to pay their heating bills, and their children fail to
thrive and grow. A 2007 Colorado study found that the second leading
cause of homelessness for families with children is the inability to
pay for home energy.\16\
---------------------------------------------------------------------------
\12\ ``One in three U.S. households faces a challenge in meeting
energy needs,'' US Energy Information Administration, Today in Energy
(Sept. 19, 2018) available at https://www.eia.gov/todayinenergy/
detail.php?id=37072.
\13\ See e.g., National Energy Assistance Directors' Association,
2018 National Energy Assistance Survey, Tables in section IV, F and G
(Dec. 2018)(to pay their energy bills, 32 percent of LIHEAP recipients
went without food, 41 percent went without medical or dental care, 31
percent did not fill or took less than the full dose of a prescribed
medicine, 13 percent got a payday loan). Available at http://neada.org/
wp-content/uploads/2015/03/liheapsurvey2018.pdf.
\14\ Mark Nord and Linda S. Kantor, Seasonal Variation in Food
Insecurity Is Associated with Heating and Cooling Costs Among Low-
Income Elderly Americans, The Journal of Nutrition, 136 (Nov. 2006)
2939-2944.
\15\ Deborah A. Frank, MD et al., Heat or Eat: The Low Income Home
Energy Assistance Program and Nutritional and Health Risks Among
Children Less Than 3 years of Age, AAP Pediatrics v.118, no. 5 (Nov.
2006) e1293-e1302. See also, Child Health Impact Working Group,
Unhealthy Consequences: Energy Costs and Child Health: A Child Health
Impact Assessment Of Energy Costs And The Low Income Home Energy
Assistance Program (Boston: Nov. 2006) and the Testimony of Dr. Frank
Before the Senate Committee on Health, Education, Labor and Pensions
Subcommittee on Children and Families (March 5, 2008).
\16\ Colorado Interagency Council on Homelessness, Colorado
Statewide Homeless Count Summer, 2006, research conducted by University
of Colorado at Denver and Health Sciences Center (Feb. 2007).
---------------------------------------------------------------------------
When people are unable to afford paying their home energy bills,
dangerous and even fatal results occur. In the winter, families resort
to using unsafe heating sources, such as space heaters, ovens and
burners, all of which are fire hazards. Space heaters pose 3 to 4 times
more risk for fire and 18 to 25 times more risk for death than central
heating. In 2007, space heaters accounted for 17 percent of home fires
and 20 percent of home fire deaths.\17\ In the summer, the inability to
keep the home cool can be lethal, especially to seniors. According to
the CDC, older adults, young children and persons with chronic medical
conditions are particularly susceptible to heat-related illness and are
at a high risk of heat-related death. The CDC reports that 3,442 deaths
resulted from exposure to extreme heat during 1999-2003.\18\ The CDC
also notes that air-conditioning is the number one protective factor
against heat-related illness and death.\19\ LIHEAP assistance helps
these vulnerable seniors, young children and medically vulnerable
persons keep their homes at safe temperatures during the winter and
summer and also funds low-income weatherization work to make homes more
energy efficient.
---------------------------------------------------------------------------
\17\ John R. Hall, Jr., Home Fires Involving Heating Equipment
(Jan. 2010) at ix and 33. Also, 40 percent of home space heater fires
involve devices coded as stoves.
\18\ CDC, ``Heat-Related Deaths--United States, 1999-2003'' MMWR
Weekly, July 28, 2006.
\19\ CDC, ``Extreme Heat: A Prevention Guide to Promote Your
Personal Health and Safety'' available at http://emergency.cdc.gov/
disasters/extremeheat/heat_guide.asp.
---------------------------------------------------------------------------
LIHEAP is an administratively efficient and effective targeted
health and safety program that works to bring fuel costs within a
manageable range for vulnerable low-income seniors, the disabled and
families with young children. We respectfully request that LIHEAP be
funded at no less than $4.7 billion in fiscal year 2020.
[This statement was submitted by Olivia Wein, Staff Attorney,
National
Consumer Law Center.]
______
Prepared Statement of the Lymphatic Education & Research Network
_______________________________________________________________________
key recommendations
--Provide the National Institutes of Health (NIH) with $41.6 billion
for fiscal year 2020 and advance lymphatic disease research by
expanding resources and encouraging better coordination among
relevant institutes and centers
--Establish a National Commission on Lymphatic Disease Research at
the NIH to identify emerging opportunities, challenges, gaps,
structural changes, and recommendations on lymphatic disease
research
--Provide the Centers for Disease Control and Prevention (CDC) with
$7.8 billion for fiscal year 2020 and enable programmatic
activity on lymphatic disease education and public awareness
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, thank you for the opportunity to testify before you
as you consider fiscal year 2020 appropriations for the National
Institutes of Health (NIH) and the Centers for Disease Control and
Prevention (CDC).
My name is Kathy Bates, and I have lymphedema. I was diagnosed with
breast cancer almost 7 years ago and had a double mastectomy. My
surgeons felt it necessary to remove 19 lymph nodes from my left armpit
and 3 from my right. I am profoundly grateful to the doctors who cured
me of cancer, but the cost of that cure means I am forced to live with
this incurable disease for the rest of my life.
about le&rn
I serve as the National Spokesperson for the Lymphatic Education &
Research Network, also known as LE&RN. Our mission is 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.
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, 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. Like seven million other Americans, I developed lymphedema after
I was treated for cancer. In my case, within a week of having a double
mastectomy, I began to feel the symptoms of the disease: chronic
swelling in my arms, pain, and loss of mobility. I learned that I could
now expect a lifetime of severe bacterial infections called cellulitis,
which can prove fatal. I learned that those of us with LE faced a
lifetime of time-consuming daily care regimens. These include manual
lymph drainage massage, wrapping oneself in compression garments and
using a pneumatic pump to control the swelling. Forever. Compression
garments aren't even covered by Medicare. We are working to expand
access through the Lymphedema Treatment Act, and we are hopeful this
bill will pass this year. But it is clear that this community deserves
more options.
Lymphedema is an ignored disease. A study concluded that physicians
are currently getting an average of only 15-30 minutes of study on the
lymphatic system in their entire medical training. This leaves them
ill-prepared to diagnose the disease. Misdiagnosis leads to improper
treatment. Those who are diagnosed find it difficult to find certified
lymphedema therapists. Few medical centers exist that are prepared to
address lymphatic diseases. Surgeons are experimenting with treatment
that could alter the course of the disease. However, the necessary
basic research is not being done to inform their procedures. And
currently, Medicare and Medicaid do not cover some of the basic
treatment needs of these patients--such as compression garments, which
we must all wear daily.
fiscal year 2020 appropriations recommendations
It is time for a challenge worthy of our great country. We ask that
within 20 years, we will make lymphedema a truly treatable disease. To
reach this goal will require a commitment to important medical
research. LE&RN joins the broader medical research community in
thanking Congress for continuing to provide the National Institutes of
Health with proportional and sustainable funding increases over the
past several fiscal years, and we ask you all to continue to prioritize
these activities by providing at least a $2.5 billion funding increase
for fiscal year 2020 to bring NIH's budget up to $41.6 billion.
We also urge the Subcommittee to work to expand and advance the
lymphatic disease portfolio at the NIH. In late 2015, the NIH hosted a
Lymphatic Symposium, where experts in the field identified a scientific
roadmap that could build the research portfolio up to a level of at
least $70 million annually over subsequent years by funding meritorious
grants on critical topics. In an effort to further support and enhance
emerging lymphedema and lymphatic disease research activities, we ask
the Subcommittee to encourage further collaboration among relevant
institutes and centers conducting research in this area. We also call
on the Subcommittee to work with your colleagues to establish a
National Commission on Lymphatic Disease Research, which can thoroughly
examine the portfolio and make recommendations on how best to advance
this emerging scientific area under NIH's current structure. Currently,
the National Institutes of Health spends approximately $25 million
annually on lymphatic research, and only $5 million of this is
dedicated to clinical lymphedema research. Experts state with
confidence that there is no other disease affecting more Americans that
receives so little attention. It must also be noted that study of the
lymphatic system is poised to bring miracles for a host of diseases
that are part of the lymphatic continuum: obesity, heart disease,
diabetes, Rheumatoid arthritis, cancer metastasis, AIDS, Crohn's
disease, lipedema, and a host of other diseases. Recent research
discovered lymphatics surrounding the brain, which now has us studying
its impact on Alzheimer's disease and multiple sclerosis.
LE&RN also joins the public health community in asking Congress to
provide the Centers for Disease Control and Prevention (CDC) with $7.8
billion through fiscal year 2020 and to establish funding to increase
awareness, education, and surveillance of lymphatic diseases. The CDC's
National Center for Chronic Disease Prevention and Public Health
Promotion has programs dedicated to improving surveillance, physician
education, and public awareness for several chronic diseases. We
encourage the Subcommittee to establish merit-based programmatic
activity in this area that will allow CDC to work with stakeholder
organizations to expand important initiatives on 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. 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 Kathy Bates, National
Spokesperson,
Lymphatic Education & Research Network.]
______
Prepared Statement of March of Dimes
March of Dimes, a unique collaboration of scientists, clinicians,
parents, members of the business community, and other volunteers
representing every State, the District of Columbia and Puerto Rico,
appreciates this opportunity to submit testimony for the record on
fiscal year 2020 appropriations for the Department of Health and Human
Services (HHS). March of Dimes leads the fight for the health of all
mothers and infants through our research, community services,
education, and advocacy. Our organization recommends the aforementioned
funding levels for programs and initiatives that are essential
investments in maternal and child health.
Eunice Kennedy Shriver National Institute of Child Health and Human
Development (NICHD):
March of Dimes recommends that Congress provide at least $1.6
billion for NICHD's groundbreaking biomedical research activities in
fiscal year 2020. 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. March of Dimes is strongly
supportive of NICHD's efforts to expand research identifying safe and
effective therapies for pregnant and lactating women. The Task Force on
Research Specific to Pregnant and Lactating Women (PRGLAC) laid the
foundation for this important work by releasing recommendations in
September 2018 as mandated by Congress in the 21st Century Cures Act
(Public Law 114-255). March of Dimes is encouraged that NIH has renewed
PRGLAC for an additional 2 years to continue its essential work.
Funding for NICHD will also support important 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 as well
as to determine the health risks that Zika virus infection poses to
pregnant women and their developing fetuses.
Title V Maternal and Child Health Block Grant Program:
March of Dimes recommends funding the Title V Maternal and Child
Health Block Grant Program (Title V Block Grant) at $698 million.
States, territories and other jurisdictions use Title V Block Grant
funds to support their most pressing maternal and child health needs.
We thank you for new funds made available in fiscal year 2019 to
intensify State efforts to prevent maternal deaths and severe maternal
morbidity. States are using this new investment to support maternal
mortality review committees, implement the Alliance for Innovation on
Maternal Health program, and continue State Maternal Health Innovation
Grants. We urge the Committee to increase funding for the Title V Block
Grant in fiscal year 2020 to allow States to address maternal mortality
while maintaining and expanding its work to improve maternal and child
health across the Nation.
Safe Motherhood Initiative:
The mission of the Safe Motherhood Initiative at the CDC's National
Center for Chronic Disease Prevention and Health Promotion is to
promote optimal reproductive and infant health. March of Dimes
recommends funding of $58 million for the Safe Motherhood program,
level with the amount provided in fiscal year 2019. The money would be
used to sustain CDC's efforts to address the Nation's alarming number
of maternal deaths by supporting State-based maternal mortality review
committees. March of Dimes also strongly urges maintenance of the
preterm birth sub-line at $2 million, as authorized in the PREEMIE
Reauthorization Act of 2018 (Public Law 115-328), to maintain ongoing
and essential preterm birth research at CDC. This work is helping
prevent preterm birth and improve outcomes for the one in 10 babies
born too soon in the United States.
National Center on Birth Defects and Developmental Disabilities
(NCBDDD):
NCBDDD is the lead Federal agency tasked with supporting vital
surveillance, research, and prevention activities on birth defects and
developmental disabilities. For fiscal year 2020, March of Dimes urges
the Committee to provide at least $166.14 million for NCBDDD and apply
this increase across the full range of NCBDDD activities. This increase
aligns with March of Dimes' request to increase funding for the CDC by
22 percent by fiscal year 2022. We also urge the Committee to continue
support for two new NCBDDD activities funded in fiscal year 2019, the
Surveillance for Emerging Threats to Mothers and Babies Initiative and
work to improve neonatal abstinence syndrome (NAS) surveillance. The
Emerging Threats Initiative enables select States and jurisdictions to
continue important work begun during the Zika virus response to
identify and address new threats to mothers and infants. NCBDDD's
efforts to improve NAS surveillance are vital to helping us understand
and address the opioid epidemic's short- and long-term impact on
infants.
Newborn Screening: March of Dimes urges funding of $29.8 million
for CDC's Newborn Screening Quality Assurance Program (NSQAP) and $21.9
million for the Health Resources and Services Administration's
Heritable Disorders program, which play critical roles in assisting
States in the adoption of additional screenings, educating providers
and consumers, and ensuring coordinated follow-up care. The Heritable
Disorders program also supports the work of the Advisory Committee on
Heritable Disorders in Newborns and Children (ACHDNC), which provides
recommendations to the HHS Secretary for conditions to be included in
the Recommended Uniform Screening Panel (RUSP). In recent years, the
ACHDNC has added four new conditions to the RUSP, bringing the total
number of recommended screens to 35. Additional funding for NSQAP and
the Heritable Disorders program is crucial to ensure States have
adequate funds and technical assistance to implement screening tests
for these new additions to the RUSP.
Grants for Maternal Depression Screening and Treatment: Research
shows that up to one in seven pregnant women or new mothers experience
some sort of maternity-related depression, yet only about 15 percent of
those affected receive treatment. The 21st Century Cures Act sought to
address this gap by authorizing grants to States to improve screening
for and treatment of maternal depression in pregnant and postpartum
women. March of Dimes appreciates that Congress provided funding for
this innovative grant program in fiscal year 2019 and urges the
Committee to make available the full authorized amount of $5 million
again in fiscal year 2020.
Funding to Promote Optimal Birth Spacing and Improved Birth
Outcomes: Research shows that appropriate birth spacing--waiting at
least 18 months between pregnancies--can dramatically reduce the risk
of poor birth outcomes. Additionally, we know that the youngest mothers
have some of the worst birth outcomes. We can mitigate these risk
factors by ensuring women have access to evidence-based counseling and
education prior to pregnancy and access to all forms of contraception
approved by the Food and Drug Administration. To support these
important goals, March of Dimes recommends funding of $400 million for
Title X Family Planning Program and $110 million for the Teen Pregnancy
Prevention Program administered by the Office of the Assistant
Secretary for Health.
conclusion
March of Dimes volunteers and staff look forward to working with
appropriators and all of Congress to secure the resources needed to
improve our Nation's health. Federal public health programs are
essential to preventing preterm birth, ending preventable maternal
deaths, and addressing the opioid epidemic's impact on mother, infants
and families.
[This statement was submitted by Rahul Gupta, MD, MPH, MBA, FACP,
Chief Medical & Health Officer, Senior Vice President, March of Dimes.]
______
Prepared Statement of The Marfan Foundation
summary of recommendations for fiscal year 2020
_______________________________________________________________________
--Provide $41.6 billion for the National Institutes of Health (NIH)
and proportional increases across its Institutes and Centers
--Continue expanding heritable connective tissue condition/vascular
malformation research supported by NIH with proportional
funding increases for the National Heart, Lung, and Blood
Institute (NHLBI); National Institute of Arthritis and
Musculoskeletal and Skin Diseases (NIAMS); National Eye
Institute (NEI); and National Center for Advancing
Translational Sciences (NCATS).
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray and distinguished members of
the Subcommittee, thank you for your time and your consideration of the
priorities of the community of individuals impacted by Marfan Syndrome,
vascular Ehlers-Danlos Syndrome, and Loeys-Dietz Syndrome as you work
to craft the fiscal year 2020 L-HHS Appropriations Bill.
about marfan syndrome, vascular ehlers danlos, loeys-dietz syndrome,
vascular malformations, and other heritable connective tissue disorders
Connective tissue is found throughout the body and heritable
connective tissue disorders, like Marfan syndrome, vascular Ehlers-
Danlos Syndrome, and Loeys-Dietz Syndrome can affect many different
parts of the body. Features of the conditions are most often found in
the heart, blood vessels, bones, joints, and eyes. Many of these
conditions are genetic and cause issues including the enlargement of
the aorta (the main blood vessel that carries blood from the heart to
the rest of the body), a life-threatening problem that requires
appropriate and timely medical intervention. Additionally, life-long
chronic and progressive issues remain a continuous burden.
about the foundation
The Marfan Foundation creates a brighter future for everyone
affected by Marfan syndrome, vascular Ehlers Danlos, Loeys-Dietz
syndrome, and related aortic aneurysm syndromes.
--We pursue the most innovative research and make sure that it
receives proper funding.
--We create an informed public and educated patient community to
increase early diagnosis and ensure life-saving treatment.
--We provide relentless support to families, caregivers, and
healthcare providers.
We will not rest until we've achieved victory--a world in which
everyone with Marfan syndrome or a related condition receives a proper
diagnosis, gets the necessary treatment, and lives a long and full
life.
centers for disease control and prevention
People with heritable connective tissue disorders are born with
them but features of the conditions are not always present right away.
Some people have a lot of features at birth or as young children--
including serious conditions like aortic enlargement. Others have fewer
features when they are young and don't develop aortic enlargement or
other signs of Marfan syndrome, vascular Ehlers Danlos, or Loeys-Dietz
syndrome until they are young adults. Some features of these syndromes,
like those affecting the heart and blood vessels, bones or joints, get
worse over time. This makes it very important for people with such
conditions to receive accurate, early diagnosis and treatment. Without
it, they can be at risk for potentially life-threatening complications
that could lead to a sudden early death. The earlier some treatments
are started, the better the outcomes are likely to be.
Please provide $750,000 for a rare heart disease program that
includes enhanced sports screenings at the Centers for Disease Control
and Prevention's (CDC). Aortic aneurysm syndrome conditions continue to
claim the lives of people across the country, including high school
athletes who have not received an appropriate sports physical prior to
participation. A CDC program that promotes education and awareness
activities would ensure that there is a greater awareness of the
increasing number of genetic aortic conditions that affect people from
coast-to-coast and ensure that all young athletes are appropriately
screened for potentially life-threatening genetic aortic conditions.
national institutes of health
NIH, specifically NIAMS and NHLBI, have worked closely with the
Foundation to investigate the mechanisms of these conditions. In recent
decades, this research has yielded significant scientific breakthroughs
that have the potential to improve the lives of affected individuals.
In order to ensure that the heritable connective tissue disorders
research portfolios can continue to expand and advance, NIH requires
meaningful funding increases to invest in emerging and promising
activities.
patient access/patient perspective
Other than his height, Nick Vogel, a 6'9'' volleyball player from
San Diego, did not display easily-detectable characteristics of Marfan
syndrome. Intensive screening for the disorder isn't indicated nor
affordable for the average 16-18 year old who plays the sport, where
being tall is standard. It wasn't until a routine echocardiogram was
performed by the USA Volleyball Team's physician that an abnormality
was detected in Nick's aorta. Nick received the news while playing for
Club Team Friedrichshafen in Germany, and he was then told to stop all
strenuous activity immediately.
Genetic sequencing throughout the following weeks would reveal an
FBN1 mutation, and Nick subsequently retired from volleyball at the age
of 25. Since then, it has become Nick's mission (along with his mother
Rita) to raise awareness, to educate, and to support athletes who may
be affected by Marfan or related conditions. Without the echocardiogram
and subsequent genetic testing, Nick may not have received his
diagnosis until he had suffered a potentially life-ending aortic
dissection, and by then, it would be too late.
[This statement was submitted by Michael Weamer, President and CEO,
The Marfan Foundation.]
______
Prepared Statement of the Massachusetts Energy Directors Association
The Massachusetts Energy Directors Association (MEDA) is a State-
wide coalition of Energy/Fuel Directors advocating on behalf of the Low
Income Home Energy Assistance Program (LIHEAP) recipients within the
Commonwealth of Massachusetts.
The program is administered by a network of twenty community action
agencies, one city and one non-profit. This network collectively
provides fuel assistance, weatherization and heating repair and
replacement under the supervision of the Department of Housing and
Community Development which administers these HHS and DOE funded
programs for the Federal Government.
summary of request
The network that delivers LIHEAP in Massachusetts offers the
interconnected programs noted above, with the goals of providing
assistance in paying heating bills, while stretching the available
LIHEAP benefits through comprehensive weatherization measures and
replacement of inefficient and inoperable heating systems. The
mutually-supportive nature of these interconnected programs provides
not only bill payment assistance but also necessary health and safety
benefits that protect our most vulnerable citizens; young children,
elderly, disabled , veterans and those who work hard every day just to
provide the basic needs of survival and everyday living for themselves
and their families. These programs also work in concert to improve
energy conservation and efficiency to ensure the dollars spent on
heating benefits are maximized to the fullest extent possible. This
combination of LIHEAP and weatherization/energy efficiency funding not
only directly benefits those who utilize it, but also increases the
cost effectiveness of the LIHEAP funding.
LIHEAP was funded at $3.69 billion last year. Massachusetts
legislators, recognizing the necessity to supplement the Federal
benefits in a State with cold winters and high energy prices, passed a
$30 million supplement to those Federal funds. This provided
desperately needed resources to help eligible clients with their energy
costs. The recognition of the benefit this program provides underscores
the importance of increased funding at the Federal level to meet the
need that currently exists. $5.1B was allocated the last time the
program was authorized in 2005. LIHEAP has seen its funding dwindle
since its high in 2009 as the need continues to increase. For the past
3 years, the current administration has proposed eliminating this
program altogether which in and of itself is remarkable in the wake of
what that would actually mean to real people. However, Congress, and
this Subcommittee in particular, have been strong, bipartisan
supporters of LIHEAP and MEDA is grateful to you for those continued
efforts. We join countless groups and States throughout the country in
requesting an increased level of support in fiscal year 2020 not only
to continue these efforts, but to maximize the LIHEAP allocation to the
fullest extent possible.
eligibility and need
LIHEAP is available in Massachusetts to those households that have
incomes up to 60 percent of the estimated State median income.
Eligibility to the fuel assistance program also provides access to
weatherization services designed to maximize energy efficiency and
heating system repair and replacement to ensure households have heating
systems that minimize fuel consumption. In Massachusetts, partnerships
have been formed with public utility companies to provide enhanced
efficiency services, significant energy discounts, protections from
termination of service and responsible payment options for those who
participate in LIHEAP further enhancing the benefits of this program.
While Massachusetts takes more than 185,000 applications for LIHEAP
annually, we recognize that this is only a fraction of individuals and
families who should be participating in the program. Efforts to make
the program more accessible and well-known are paramount to the
outreach efforts all our LIHEAP partners engage in every year. The
numbers also clearly show that over the lifetime of this program,
funding and participation run hand in hand. Simply put, the more
funding provided the more eligible participants who are served.
Every year, the agencies that administer LIHEAP work with clients
to address emergency heating situations. The elderly and disabled, who
rely on medications in order to survive, will often forgo medical needs
in order to heat their homes, making them susceptible to larger health
problems. They may not be able to pay their heating costs due to high
prescription and medication costs and spend their winters nearly
freezing, or worse, actually freezing to death. Families with small
children must make similar choices between heating their homes
adequately or keeping everyone fed. These are not decisions that should
have to be made when we live in a country that has the wealth and
prosperity which we currently enjoy. We must protect our veterans, our
children, our elderly and those who cannot properly fend for themselves
to the best of our ability. This program allows us to do that in a
humane and constructive way and provides participants with the dignity
to properly support those they love and care for. Desperation leads to
bad decisionmaking, a helping hand and a willingness to help leads to
hope and a brighter future.
funding request
The House has requested $3.84 billion in LIHEAP funding for fiscal
year 2020 which is a $150 million increase over fiscal year 2019. In
the past, LIHEAP funding has been authorized by as much as $5.1B
through the Energy Policy Act of 2005, and actually appropriated at
that level a decade ago, but has seen subsequent appropriations
decrease over the past several years. Again, the current Administration
has requested that the program funding be eliminated from the budget
completely. However, there has always been strong bipartisan support
from both the House and Senate in recognizing the need to make
available the important services LIHEAP provides. This support is
absolutely essential for those who struggle to maintain basic services
where they live during the winter against the many dangers cold and
freezing temperatures can have without adequate resources to support a
healthy living environment. We therefore urge this Subcommittee to
strongly consider not only supporting their House counterparts, but to
increase funding to more adequately address the obvious need.
Thank you for the opportunity to express the concerns and support
the Massachusetts Energy Directors Association has for these necessary
and vital programs and the need for adequate funding to keep them
running. On behalf of the twenty-two administering agencies and the
hundreds of thousands of people who are assisted by LIHEAP in the
Commonwealth as well as the millions of households that rely on these
programs nationally, we thank you for your consideration of this
request.
[This statement was submitted by Darlene Gallant & Peter Wingate,
Co-Chairs, Massachusetts Energy Directors Association.]
______
Prepared Statement of Meals on Wheels America
Dear Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee:
Thank you for the opportunity to present testimony concerning
fiscal year 2020 appropriations for the Older Americans Act (OAA)
Nutrition Program, administered by the Administration for Community
Living's (ACL) Administration on Aging within the U.S. Department of
Health and Human Services (HHS). I am submitting this statement on
behalf of Meals on Wheels America, the network of thousands of
community-based senior nutrition programs operating throughout the
country and the 2.4 million seniors who receive these essential
congregate and home-delivered nutrition services.
We are grateful for the ongoing support that the Subcommittee has
shown for this program, which improves the health and wellbeing of
older adults by preventing and combatting hunger and social isolation.
While recent appropriations increases in fiscal year 2018 and fiscal
year 2019 have provided a needed investment in our Nation's aging
service and support network, the fact remains that current funding
levels are still insufficient to keep pace with demand due to a growing
senior population, rising costs of inflation and existing unmet need.
In fiscal year 2020, we urge you to build on the longstanding
bipartisan, bicameral support for the OAA Nutrition Program by funding
the program at a total of $1 billion--an increase of $93 million (10
percent) over fiscal year 2019 levels. This is the amount passed by the
House Committee on Appropriations last month, and we ask that you
provide this same level of funding in the Senate's fiscal year 2020
Labor-HHS-Education Appropriations Bill. Specific line-item requests
are:
--Congregate Nutrition Services (Title III C-1)--$525,000,000
--Home-Delivered Nutrition Services (Title III C-2)--$305,000,000
--Nutrition Services Incentives Program (NSIP) (Title III)--
$170,000,000
Since 1965, the OAA has been the primary piece of legislation
supporting vital services and supports for older adults age 60 and
older and their caregivers, with congregate and home-delivered services
being the only Federal programs designed to meet both the social and
nutritional needs of our Nation's seniors at greatest risk of hunger
and isolation. For decades, the OAA Nutrition Program has provided
nutritious meals, friendly visits, safety checks and community
connections to older adults, consequently improving countless lives and
saving considerable taxpayer dollars. This public-private partnership
has not only withstood the test of time, but has established itself as
a highly effective and trusted program that enables seniors to live
longer in their homes, where they want to be.
Despite the OAA Nutrition Program's efficacy and broad support from
the public, policymakers and seniors themselves, the community-based
nutrition providers that offer OAA services face a myriad of financial
challenges. Such constraints have inhibited the program's ability to
expand and diminished its reach, despite a period of unprecedented
growth in the older adult population.
Greater investments must be made in community-based programs like
Meals on Wheels, as they comprehensively address the issues of senior
hunger, isolation and loss of independence by delivering so much more
than just a meal. If properly funded, the OAA Nutrition Program would
reach more of our Nation's most vulnerable and frail seniors--such as
the costliest 5 percent of beneficiaries who account for 42 percent of
Medicare fee-for-service spending--preventing unnecessary healthcare
expenditures like emergency department visits, hospital admissions and
readmissions, and premature placement in institutionalized care.
insufficient federal funding threatens a growing number of seniors
Nine and a half million seniors (13 percent) face the threat of
hunger and approximately 17 million seniors (24 percent) live alone,
placing them at greater risk of the harmful health effects of food
insecurity, malnutrition and social isolation. Food insecure older
adults have worse health outcomes than those who are food secure, with
increased risk for heart disease, depression and decline in cognitive
function and mobility. Negative health effects associated with social
isolation are comparable to those of smoking 15 cigarettes per day.
Despite the well-founded understanding of the relationship between
healthy aging and access to nutritious food and regular socialization,
millions of seniors struggle to meet these basic human needs.
While the OAA Nutrition Program plays a fundamental role in
addressing the prevalent issues of senior hunger and isolation, Federal
funding for the program has fallen behind with respect to demographic
shifts and inflation. Even with appropriations increases in fiscal year
2018 and 2019, total funding for all OAA programs--of which the
Nutrition Program makes up the largest share (44 percent)--amounts to
an average annual increase of only 1 percent since 2001, and since 2011
has failed to keep pace with the growing age 60+ population. Adjusting
for inflation, funding for the OAA Nutrition Program decreased by $80
million (8 percent) between fiscal year 2001 and 2019.
The long-term inadequate funding for the OAA Nutrition Program has
caused a wide gap between seniors served and those who need services
but are not receiving them. A Government Accountability Office study
revealed that 83 percent of low-income, food insecure seniors do not
receive the meals that they likely need. And, approximately 21 million
fewer meals were served in 2017 than in 2005, while waitlists for
seniors seeking meals continue to mount in communities nationwide. In
fact, results from a national survey we fielded to our Membership
indicate that almost half of senior nutrition programs report a
waitlist for meals (for those programs allowed to keep one) and that
the overwhelming majority cite lack of funding as the reason. In the
absence of significant future appropriations increases, the
consequences of funding deficits will undoubtedly worsen, especially as
the senior population is projected to reach over 118 million by 2060.
serving those with the greatest social and economic need
To address the growing demand for services, the OAA Nutrition
Program provided 220 million congregate and home-delivered meals in
2017. The OAA exists to support seniors in the greatest social and
economic need, and as such, effectively targets these nutrition
services with limited financial resources. For many seniors
participating in the program, staff members and peers at a congregate
dining facility, or a volunteer delivering Meals on Wheels, may be the
only individual(s) she or he sees that day; and the meal received often
accounts for the majority of her or his food intake for the day.
The profile of clients receiving home-delivered meal services
reveals a high degree of vulnerability:
--79 percent are age 75 and older
--69 percent are women
--35 percent live at or below poverty level
--59 percent live alone
--25 percent live in rural areas
--15 percent are veterans
--28 percent are a racial and/or ethnic minority
--82 percent take 3 or more medications daily
Additionally, about 74 percent of congregate nutrition program
clients and 80 percent of home-delivered meal clients have at least one
chronic condition. The vital services financed by the OAA Nutrition
Program allow seniors with these risk factors to remain safer,
healthier and less isolated in their own homes and communities.
the solution exists
With public spending on healthcare rising steeply each year--
attributable in part to a rapidly growing senior population with
complex health needs--it is imperative that we invest in cost-effective
programs that promote health and reduce healthcare utilization.
The results of a 2015 study commissioned by Meals on Wheels America
found that seniors on waitlists for nutrition services who received a
15-week intervention of 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, when
compared to baseline. In a more recent study, home-delivered meal
participants from a sample of older adults dually-eligible for Medicare
and Medicaid were observed to experience fewer emergency department
visits and lower healthcare spending than the non-participant controls,
suggesting the program's potential to reduce healthcare costs among the
most vulnerable patients.
The majority of seniors receiving OAA nutrition services experience
positive results. Home-delivered meal clients, in particular, self-
report improved nutritional intake, health and independence due to
their participation, saying that the meals help them:
--Eat healthier food (79 percent)
--Improve health (82 percent)
--Stay in their own home (92 percent)
--Feel better (89 percent)
Fortunately, the infrastructure and cost-effective interventions to
support this unique population by promoting and maintaining their
health and independence already exist through the OAA network of more
than 5,000 local, community-based programs, which has the capacity to
serve significantly more seniors, if provided more funding to do so.
delivering a strong return on investment for our nation
We understand the challenging decisions you are responsible for
making in the coming months with respect to the Federal budget;
however, we are asking for a $93 million increase for the OAA Nutrition
Program because of the strong return it delivers to seniors and
taxpayers alike. While spending on Medicare and Medicaid continues to
rise, a senior can receive Meals on Wheels for a whole year for
approximately the same cost or less as one day in the hospital or ten
days in a nursing home, allowing her or him to remain in their home
with comfort and dignity and helping to drive down preventable
healthcare expenditures. As such, we also urge the Senate to adopt a
bipartisan budget agreement that would raise the overall spending
limits so that critical non-defense discretionary programs, such as
congregate and home-delivered meals, do not face the devastating threat
of sequestration.
As the Subcommittee develops a Labor-HHS-Education Appropriations
Bill for fiscal year 2020, we ask that you provide, at a minimum, $1
billion for the OAA Nutrition Program. As additional evidence of
support for this increase, 39 Senators signed onto a bipartisan Dear
Colleague letter on April 12, 2019 calling for an overall 12 percent
increase above fiscal year 2019 levels to all OAA programs. Again, we
thank you for your leadership, continued support and consideration and
are pleased to offer our assistance and expertise at any time
throughout the appropriations process.
[This statement was submitted by Ellie Hollander, President and
CEO, Meals on Wheels America.]
______
Prepared Statement of the Medical Library Association and Association
of Academic Health Sciences Libraries
I, Mary M. Langman, Director, Information Issues and Policy,
Medical Library Association (MLA), submit this statement on behalf of
MLA and the Association of Academic Health Sciences Libraries (AAHSL).
MLA is a global, nonprofit, educational organization with a membership
of more than 400 institutions and 3,000 professionals in the health
information field. AAHSL supports academic health sciences libraries
and directors in advancing the patient care, research, education and
community service missions of academic health centers through visionary
executive leadership and expertise in health information, scholarly
communication, and knowledge management.
We thank the Subcommittee for the opportunity to submit testimony
supporting appropriations for the National Library of Medicine (NLM),
an agency of the National Institutes of Health (NIH), and recommend
$463,599,000 for NLM in fiscal year 2020, the funding level provided by
the Committee on Appropriations in House Report 116-62.
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 results of research readily available to
all who need it. NLM is also a leader in data science and open science
and is facilitating implementation of NIH-wide efforts data science
activities. As health sciences librarians who use NLM's programs and
services every day, we can attest that NLM resources literally save
lives, making NLM an investment in good health.
NLM Amplifies NIH Investments in Biomedical Research
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,
and the public, enabling such data and information to be used more
efficiently and effectively to drive innovation and improve health.
NLM's budget supports intramural services, research, and programs that
sustain the Nation's biomedical research enterprise and more-it builds,
sustains, and augments a suite of almost 300 databases which provide
information access to health professionals, researchers, educators, and
the public. It also supports the acquisition, organization,
preservation, and dissemination of the world's biomedical literature
and information. To support exponential growth of data and information,
in fiscal year 2020 and beyond, NLM's budget must continue to be
augmented to support expansion of its information resources, services,
research, and programs which collect, organize, and develop new ways to
make the rapidly expanding biomedical knowledge resources and data
readily accessible.
NLM plays a critical role in NIH's open science and data science
initiatives and in enhancing interoperability of health information
technology, including electronic health records (EHRs). NLM leads the
development, maintenance and dissemination of key standards for health
data interchange that are now required of certified EHRs. NLM also
addresses Congressional priorities through ClinicalTrials.gov, response
to the opioid crisis, and disaster preparedness and response efforts.
Growing Demand for NLM's Information Services
NLM delivers more than 50 trillion bytes of data to millions of
users daily, which helps researchers advance scientific discovery and
accelerate its translation into new therapies; provides health
practitioners with information that improves medical care and lowers
its costs; and gives the public access to resources and tools that
promote wellness and disease prevention. Every day, medical librarians
across the Nation use NLM's services to assist clinicians, students,
researchers, and the public in accessing information to save lives and
improve health. Without NLM, our Nation's medical libraries would be
unable to provide quality information services that our Nation's health
professionals, educators, researchers, and patients increasingly need.
NLM's data repositories and online integrated services such as
GenBank, dbGaP, Genetics Home Reference (GHR), PubMed, and PubMed
Central (PMC) are revolutionizing medicine and ushering in an era of
personalized medicine. GenBank is the definitive source of gene
sequence information. Some 2 million users accessed consumer-level
information about genetics from GHR which contains more than 2,500
summaries of genetic conditions, genes, gene families, and chromosomes.
PubMed, with 29 million references to the biomedical literature, is the
world's most heavily used source of bibliographic information with more
than 1.3 million new citations added in fiscal year 2018 and more than
2.9 million users each day. PubMed Central (PMC) is NLM's digital
archive, which provides free public access to the full-text versions of
more than 5.1 million biomedical journal articles, including those
produced by NIH-funded researchers and also public assess to research
funded by ten other Federal agencies. On a typical weekday
approximately 2.5 million users download more than 5 million articles
from PMC.
NLM's traditional print and electronic collections increase
steadily each year, standing at more than 21 million items-books,
journals, technical reports, manuscripts, microfilms, photographs and
images. NLM ensures the availability of this information for future
generations, making it accessible to all Americans, irrespective of
geography or ability to pay, and enabling citizens to make the best,
most informed decisions about their healthcare.
NLM's MedlinePlus provides consumers with trusted, reliable health
information on 1,000 topics in English and Spanish. It attracts more
than 277 million visitors annually. 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.
Encourage NLM Partnerships
NLM's outreach programs are essential to the MLA and AAHSL
membership and to the profession. Through the National Network of
Libraries of Medicine (NNLM), with over 7,100 members nationwide, NLM
educates medical librarians, health professionals, and the general
public about its services and provides training in their effective use.
The NNLM serves the public by promoting educational outreach for public
libraries, secondary schools, senior centers and other consumer
settings, and its outreach to underserved populations helps reduce
health disparities. NLM's ``Partners in Information Access'' provides
local public health officials with online information that protects
public health.
Since 2018, the NNLM has partnered with the NIH All of Us Research
Program to support community engagement efforts by United States public
libraries and to raise awareness about the program. To date, more than
247 libraries across the United States have joined the NNLM All of Us
Community Engagement Network to support health literacy by offering
free health and wellness resources and programs in local communities.
Data Science and Open Science
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. The library aims to fund
research that proposes state of the art methods and approaches to
address problems and ethical issues with large health data sets, tools
used to analyze them (e.g. artificial intelligence (AI)), or inferences
drawn based on them. For example, exploring approaches to characterize
the data, correct biases or compensate for missing data, and analyze
health data while preserving confidentiality, accuracy, and security.
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 across the NIH to promote and
facilitate inclusion of data science and open science core skills in
NIH training programs, and is expanding training for librarians,
information science professionals, and other research facilitators. NLM
is fostering 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.
Emergency Preparedness and Response
NLM's Disaster Information Management Research Center collects and
organizes disaster-related health information, ensures effective use of
libraries and librarians in disaster planning and response, and
develops information services to assist responders. NLM responds to
specific disasters worldwide with specialized information resources
appropriate to the need, including opioid response, bioterrorism,
chemical emergencies, fires and wildfires, earthquakes, tornadoes, and
pandemic or epidemic disease outbreaks (e.g., Zika, HIV/AIDS). MLA and
NLM's Disaster Information Specialization builds the capacity of
librarians to provide disaster-related health information outreach.
Working with libraries and publishers, NLM provides free full-text
articles from hundreds of biomedical journals and reference books to
medical teams responding to disasters.
NLM Conducts and Invests in Biomedical Informatics Research and Health
Information Technology
NLM conducts and invests in informatics research, training, and the
application of advanced computing and informatics to biomedical
research and healthcare delivery. Through its Intramural Research
Program, NLM's National Center for Biotechnology Information (NCBI)
focuses on computational biology, genomics, and biological data banks,
and the Lister Hill National Center for Biomedical Communications (LHC)
is a leader in clinical information analytics and standards.. 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 adoption of interoperable EHRs that enable health information
exchange. 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. NLM grant support contributes to
research and development of electronic health records (EHR) systems and
personal health libraries. NLM is expanding its extramural grant
programs to support growing demand for innovation in data science,
including methods for extracting meaning from data, such as genomic
sequences or clinical data from EHRs. Many of today's biomedical
informatics leaders are graduates of NLM-funded informatics research
training programs at universities nationwide. NLM also funded five new
Small Business Innovation Research and Technology Transfer awards to
facilitate innovations, such as block-chain enabled decision support to
safeguard privacy and security of patients and research participants.
Dissemination of Clinical Trial Information
ClinicalTrials.gov, the world's largest clinical trials registry,
now includes more than 287,000 registered studies and summary results
for more than 33,000 trials. As health sciences librarians who fulfill
requests for information from clinicians, scientists, and patients, we
applaud NIH and NLM for implementing requirements for clinical trials
registration and results submission consistent with the FDA Amendments
Act of 2007, and for applying them to all NIH-supported clinical
trials. These efforts increase transparency of clinical trial results
and provide patients and clinicians with information to guide
healthcare decisions. They also ensure biomedical researchers have
access to results that can inform future protocols and discoveries.
Improving Public Access to Funded Research Results
The Department of Health and Human Services (DHHS) announced a
common policy approach to expand public access to the results of HHS-
funded scientific research. Its operating divisions, and other Federal
agencies, will use NLM's PubMed Central (PMC) as a common repository to
provide free public access to peer-reviewed publications resulting from
research funded by NIH and ten other Federal agencies.
We look forward to continuing this dialogue and thank you for your
efforts to support funding of at least $463,599,000 for NLM in fiscal
year 2020, with additional increases in future years.
______
Prepared Statement of the Mending Minds Foundation
Mr. Chairman,
It is an honor to provide testimony to the Subcommittee on behalf
of the Mending Minds Foundation. I am here on behalf of the thousands
of children across the country who have had their lives turned upside
down by Childhood Post-Infectious Neuroimmune Disorders--CPIND. In
CPIND, following infection, it is believed that antibodies that would
normally fight infection ``go rogue'' and attack the brain. This
results in an inflammatory process that can lead parents like me to
watch helplessly as our children experience debilitating neurological
and behavior changes.
We are asking that you include language in the Committee's report
encouraging the National Institutes of Health (NIH) to prioritize
research efforts on Childhood Post-Infectious Neuroimmune Disorders
(CPIND). We are also asking that the increased efforts made by NIH be
reported back to the Committee, including findings on incidence,
causes, diagnostic criteria, and treatment of these conditions. We are
asking, too, that the report language encourages NIH to find ways of
further understanding conditions related to CPIND to improve patient's
clinical care.
All three of my children have been diagnosed with a neuroimmune
disorder called PANDAS, which stands for Pediatric Autoimmune
Neuropsychiatric Disorders Associated with Streptococcal Infections. A
similar condition termed PANS, Pediatric Acute-onset Neuropsychiatric
Syndrome, is experienced by many other children.
Both are devastating.
Children often experience escalating symptoms that appear
psychiatric while their underlying infection remains untreated--and
parents witness such a significant change happening that their child is
almost unrecognizable
Action needs to be taken by NIH to research the causes and
treatments of these conditions: that's why I am here today asking for
your help.
the impact of cpind
I co-founded Mending Minds with parents, scientists and doctors, to
drive serious research to find better treatments to help children with
CPIND.
Families of children with CPIND are blindsided. Previously happy
childhoods are upended as a child's personality and behaviors
completely change, suddenly leaving them with dramatic, debilitating
anxiety, obsessive thinking and compulsive behaviors. Some children are
unable to separate from parents. Some are unable to attend school, or
even leave the house.
When children are able to continue at school, they can experience
significant academic declines. Previously successful students suddenly
need special education supports, and motor function may decline as
well. Often, handwriting skills rapidly decline to the point where some
children can no longer write legibly or even at times hold a pencil.
Other ``physical'' symptoms can also occur-previously potty-trained
children suddenly need to wear diapers. Children pull out every hair on
their head, a condition called trichotillomania or obsessive hair
pulling.
Children as young as four or five suddenly appear anorexic,
restricting their eating to just a few food items leading to near
starvation because of worries about contaminated food or fear of
choking. In extreme cases, some children have to be placed on feeding
tubes.
Children experience massive mood swings, fly into aggressive rages,
full of irrational explosive anger. Even seven or 8-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
removed from their families and hospitalized for psychiatric
conditions.
Our family's journey is typical. After years of worsening behaviors
and symptoms, with misdiagnoses along the way, we finally arrived at
the true cause of our children's illness: an undiagnosed, untreated
strep infection--the same bacteria that causes a sore throat--that set
off symptoms that appeared psychiatric in nature.
What is believed to happen in CPIND is that following an infection,
in possibly genetically susceptible children, antibodies and/or immune
cells that would normally fight infection ``go rogue'' and attack the
brain. The resulting inflammatory process can lead to debilitating
neurological and behavioral changes.
connection between mental health and infection
PANDAS and PANS are part of a group of poorly understood and only
recently defined medical conditions that arise after infection. PANDAS
was first defined in the late 1990s by Dr. Susan Swedo at the National
Institute of Mental Health. Dr. Swedo described PANDAS as ``a subset of
children and adolescents who have obsessive compulsive disorder (OCD)
and/or tic disorders, and in whom symptoms worsen following infections
such as 'Strep Throat' and Scarlet Fever.''
PANDAS is believed to be a variation of rheumatic fever. Rheumatic
fever can develop if strep throat infections are not treated properly
in a timely fashion, setting off an immune response where antibodies
attack the heart, kidneys, joints, or brain.
PANS was defined in 2010 and, according to the NIH, ``includes all
cases of acute-onset OCD, not just those associated with streptococcal
infections.''
Given the significant burden that these diagnoses place on families
and the medical system, you may be wondering why these conditions are
still relatively unknown. To be clear, the symptoms that these children
are exhibiting--such as severe anxiety, obsessive compulsive symptoms,
and motor and vocal tics--are not in debate.
What remains under-researched is the idea that these symptoms are
initiated by a common infection--in this case ``strep throat.''
However, a recently published study of over one million children in
Denmark suggests that children have eight times the risk of developing
OCD following an infection. Additionally, a growing body of research
exists connecting infection to mental health changes in conditions like
schizophrenia.
Studies like these raise big questions about mental illness--which
can mean a lifetime of psychiatric mediations--and how this might
change if underlying biological causes like infection were better
understood. With over 30 percent of adolescents currently meeting
criteria for an anxiety disorder, the need for more resources to
understand these phenomena is clear.
There is a significant lack of NIH funding to support research into
these disorders and to address the issues of awareness, diagnosis and
treatment.
the cost of cpind
Recognizing the true cost and prevalence of these disorders is
imperative. There is no ``biomarker'' or easy way to diagnose these
conditions. Because there is limited awareness or clinical
understanding, children, like ours, are frequently diagnosed with
purely psychiatric conditions while their underlying infections go
untreated.
This results in a devastating escalation of symptoms, which places
tremendous burden on caregivers and educational and healthcare systems.
Families like ours spend tens of thousands of dollars and travel far
and wide for treatment--specialists are hard to find and waitlists for
medical care can be as long as 2 years. School systems face a huge
burden of putting special education supports into place for children
who need increased academic and behavioral support.
As symptoms progress, more invasive treatments are often sought by
parents, which are often not covered by insurance and sometimes in-
patient hospitalization is needed. A recent survey by Massachusetts
General Hospital suggests that as many as one-third of children
diagnosed with PANDAS have gone to the emergency room in the course of
their medical care.
asking for your support
I want my family's experience with a devastating post-infectious
neuroimmune condition to help thousands of other children who are
suffering. With your support, more can be done to help better
understand and treat these awful disorders and help children across the
United States regain their childhoods.
Parents and the Mending Minds Foundation are doing all we can to
support our children--won't you please join with us to help solve this
Nation-wide health problem?
Thank you for your consideration.
[This statement was submitted Amanda Peel Crowley, Founding Member,
Mending Minds Foundation.]
______
Prepared Statement of the Mesothelioma Applied Research Foundation
Dear Chairman Blunt and Ranking Member Murray:
We respectfully request your support to include $400,000 in the
fiscal year 2020 Labor, HHS, Education and Related Agencies
Appropriations bill for funding through the National Institute for
Occupational Safety and Health (NIOSH) within the Centers for Disease
Control and Prevention (CDC) to develop a National Mesothelioma Patient
Registry.
Mesothelioma is a form of cancer that affects the smooth lining of
the chest, lungs, heart, and abdomen. The thin layer of tissue
surrounding these organs is made up of mesothelial cells, hence the
name mesothelioma. As the cancer progresses, the lining thickens,
progressively invading and impairing the function of the organs it
surrounds. This disease has devastating symptoms such as chest pain,
difficulty breathing and bodily weakness and is among the deadliest
cancers, as patients typically survive approximately 1 year from the
time of diagnosis.
Mesothelioma is known to be caused by exposure to asbestos. The CDC
reports that despite regulatory actions to decrease the use of
asbestos, the annual number of mesothelioma patients has increased by
nearly 5 percent from 1999 to 2015. There is an established history of
asbestos exposure in the U.S. military, and approximately one third of
mesothelioma cases have been shown to involve exposures to Navy
personnel or civilian workers in Naval shipyards.
NIOSH, a part of the CDC, has started the initial steps to create a
national mesothelioma patient registry that will establish priorities
for successful outcomes, develop and revise standards of care and
treatment best practices for patients, share evidence-based information
between physicians across the country, implement benchmarks to improve
care, and identify centers that provide the most beneficial care to
patients. The information collected in the patient registry will be
necessary for researchers to develop additional treatments and a cure
for this disease.
Sincerely.
[This statement was submitted by Mary Hesdorffer, Executive
Director,
Mesothelioma Applied Research Foundation.]
______
Prepared Statement of METAvivor
fiscal year 2020 appropriations recommendations
_______________________________________________________________________
--Please provide the National Institutes of Health (NIH) with an
increase of at least a $2.5 billion for fiscal year 2020 to
bring total agency funding up to a minimum of $31.6 billion
annually.
--Please continue to support additional investment for the cancer
``moonshot'' as outlined by the 21st Century Cures Act and
otherwise ensure the National Cancer Institute (NCI) has
adequate resources.
--Please continue to emphasize the importance of Federal research
activities focused on controlling and eliminating cancer that
has already disseminated through committee recommendations and
timely oversight of ongoing activities.
--Please support emerging efforts to modernize the Surveillance,
Epidemiology, and End Results (SEER) Registry Program to better
capture the experience of patients impacted by stage IV
metastatic breast cancer.
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, thank you once again for considering the views of
METAvivor and the stage IV metastatic cancer community as you work on
fiscal year 2020 appropriations for medical research. The community is
deeply grateful for the $2 billion funding increase provided to NIH in
fiscal year 2019. Please maintain this commitment to supporting
innovative medical research moving forward.
about metavivor
What is my involvement? I am President of METAvivor, a patient-
founded, volunteer-led, grassroots organization that funds vital
research to increase longevity and quality of life for metastatic
cancer patients. It is our sincerest hope that one day efforts such as
ours, efforts we hope you will also support, promote and undertake,
will one day make a difference for the more than 500,000 patients who
die annually of a metastasized cancer in the U.S. alone. Our disease is
defined by the spread of cancer from its original location to other
vital organs in the body, such as the bones, lungs, liver or brain. At
present it is almost always fatal. METAvivor was founded in 2009 by
four terminally ill, metastatic cancer patients because as everyone
around them was dying, they saw that no one was dedicated to, or showed
any interest in, funding the research that could make a difference for
their community. Thus METAvivor was founded for the sole purpose of
funding such research. Within 12 months two of the founders had died.
But they pressed ahead. A third died. More joined. To date they have
awarded $4.2 million in research grants despite sustaining the deaths
of 10 Board members. The organization continues to grow, but there are
limits to what we can achieve alone. We need more funding for stage IV
metastatic cancer. Far more funding is needed; far more interest is
needed; and far more research must be accomplished. After 9 years of
going this alone it is high time other organizations; especially the
NCI which has a national responsibility for all American citizens; even
the terminally ill, does right by our greater community and adds to its
portfolio a program of respectable size that addresses the issue and
funds the research that will ultimately, significantly extend life with
quality and hopefully end death for at least a segment of our
community.
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 and more likely unachievable
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.
Sustained focus is needed on research efforts intended to help
control and eliminate cancer that has already disseminated.
my story
My name is Beth Fairchild. In my former life, I was an artist, a
mother, a wife, a daughter, a friend. Now, while I may still be all of
these, I have added fearless fighter and breast cancer advocate to the
list of things that make me, me. This is my new, cancer life. At 34, my
life was pretty normal. My husband and I were successful business
owners. We were raising our daughter and preparing to adopt another. I
was happy in my personal life and career, I worked out daily and ate
healthy. Then, there it was: cancer. After months of complaining of
intestinal discomfort and lack of energy, my doctors discovered my
ovaries were the size of grapefruits and in danger of rupture. They had
to come out and, because I had a family history (my mom was diagnosed
with breast cancer at 44 and my paternal grandmother was dead and
buried at 33), I decided on a total hysterectomy. My surgery was the
day after Mother's Day. Tissue samples were sent off to pathology, and
two days later, I was told I had breast cancer. After my diagnosis, I
came home to die. I was in agony from the pain of surgery and my head
was spinning. I couldn't see past that moment in time. But it got
better. Every. Day. My body healed. I got stronger. I endured 18 weeks
of chemo and survived! I was a 34-year-old, post-menopausal, bald-
headed, terminal cancer patient, but I was alive and LIVING. I set out
to take back control of my life.
My children were my first motivation. I saw the fear in their eyes.
Mommy couldn't assure them that things would be ok, but I could show
them I wasn't going to give up. I talked candidly with them about my
condition and treatment. I got up every morning and took them to
school, even the days I didn't feel like it. I was a mom first, and
they kept me going. My job kept me going. I'm an artist. I make
tattoos. My husband and I have five studios and I have made my career
in the tattoo industry. My specialty is permanent cosmetics and areola
restoration for breast cancer patients. Ironic, huh? On the days I had
to see my breast cancer clients, I knew what the procedure meant to
them, so I would leave chemo and go straight to the studio and help a
woman feel whole again. It was therapy to me. Then, I found support
groups. I had wanted to talk to and be with other women like me. There
were several groups available in my town in North Carolina; however, I
was the youngest person there by at least 20 or 30 years. I'm in no way
minimizing the severity of cancer in older patients, but it was hard to
hear others speak about not seeing their grandkids grow into adults
when I felt like I wouldn't even see my daughter graduate from high
school. When I was diagnosed with stage IV breast cancer, I was in the
prime of my life. Cancer is a daily struggle in any season of life, but
the under-40 demographic has to not only juggle surgeries and
treatments, but oftentimes careers, new marriages, or maybe dating.
Many have young kids already, but some women will never experience
childbirth because their ovaries are suppressed from hormonal
treatments or, like me, have had them removed in order to slow the
cancer's progress. Realizing the sacrifices of these men and women, as
well as myself, made, the lack of awareness about metastatic cancer was
disturbing. I thought my condition was rare, but, turns out, not so
much. There are 600,000 people with metastatic cancer. There are 41,000
with metastatic breast cancer that die every year, which is about 113
per day. We must increase research funding for new treatments. We must
make sure that families like mine have hope and that my two little
girls know that we are working toward life extending treatments.
Through local events and social media, I have tried to help spread
the under-reported message of metastatic breast cancer. I started a
social media movement on Facebook called Stomp Out BC using the hashtag
#dontignorestageiv created by METAvivor. I am now the president of
METAvivor and work alongside other to raise funds for and draw
attention to metastatic breast cancer until my dying breath. No one can
say for sure when my time will be up, or even for certain that this
``thief of life'' we call cancer will be the cause, but short of a
miracle-and I do still believe in miracles-I will die with this cancer
in my body. In the interim, I hope the lives of the more than 600,000
people with stage IV metastatic cancer is considered when making
decisions about the future of cancer research and especially funding
the Cancer Moonshot Initiative. METAvivor has worked hard to fund
research. Since 2009, we have funded $2.4 million but we need
more...stage IV metastatic cancer needs more research.
seer registry
A timely opportunity to advance metastatic cancer research involves
modernizing the Surveillance, Epidemiology, and End-Results Registry
(SEER) so that it more accurately captures patient data. The House
included the recommendations below in the Committee Report accompanying
its LHHS Bill and we hope the Senate will similarly support this
language to move this timely effort forward.
Surveillance, Epidemiology, and End Results [SEER] Registry.-The
Committee notes recent discussions about modernizing the SEER Registry
and filling in key data gaps, such as metastatic recurrence for stage
IV metastatic breast cancer. NCI is encouraged to advance this effort
in a systematic and meaningful way that ultimately improves SEER
Registry infrastructure and capabilities.
Thank you for your time and your consideration of these requests.
[This statement was submitted by Beth Fairchild, President,
METAvivor.]
______
Prepared Statement of the Mine Safety and Health Administration
We are writing in regard to the fiscal year 2020 Budget Request for
the Mine Safety and Health Administration (MSHA), which is part of the
U.S. Department of Labor. In particular, we urge the Subcommittee to
support a full appropriation for State assistance grants for safety and
health training of our Nation's miners pursuant to section 503(a) of
the Mine Safety and Health Act of 1977. MSHA's budget includes an
amount of not less than $10,537,000 for State assistance grants. We
urge the Subcommittee to fund these grants at this statutorily
authorized level for State assistance grants so States are able to meet
the training needs of miners and to fully and effectively carry out
State responsibilities under section 503(a) of the Act. We further urge
the Subcommittee to not adopt the proviso the Department of Labor has
attached to its proposal for funding State assistance grants. 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.
A troubling aspect of the portion of MSHA's proposed budget dealing
with State assistance grants is the proviso attached to it, which
grants the following authority to the Secretary of Labor:
[A]mounts available for State assistance grants may be used for the
purchase and maintenance of new equipment required by the final
rule entitled ``Lowering Miners Exposure to Respirable Coal
Mine Dust, Including Continuous Personal Dust Monitors''
published by the Department of Labor in the Federal Register on
May 1, 2014 (70 Fed. Reg. 24813 et seq.), for operators that
demonstrate financial need as determined by the Secretary[.]
Budget Appendix, p. 755.
We support full funding of $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. The proposed budget goes beyond simply
allowing the funding of these State programs to be diminished. It has
no limits on the amount of State assistance funds that could be
diverted from their intended purpose and used elsewhere under this
proviso. Conceivably, the proviso would allow these grants to be
eliminated. As written, the budget would allow all of the State
assistance grant money to be diverted away from the States. State mine
safety and health training programs are important and should fully
funded. The money these programs need should not be reduced in order to
provide a subsidy for mine operators' compliance with MSHA's respirable
dust rule. We urge the Subcommittee to remove this proviso and not
include it in any budget bill it produces for the Department of Labor.
Section 503 of the Act was structured to be much broader in scope and
to stand as a separate and distinct part of the overall mine safety and
health program. In the Conference Report that accompanied passage of
the Federal Coal Mining Health and Safety Act of 1969, the conference
committee noted that both the House and Senate bills provided for
``Federal assistance to coal-producing States in developing and
enforcing effective health and safety laws and regulations applicable
to mines in the States and to promote Federal-State coordination and
cooperation in improving health and safety conditions in the Nation's
coal mines.'' (H. Conf. Report 91-761). The 1977 Amendments to the Mine
Safety and Health Act expanded these assistance grants to both coal and
metal/non-metal mines and increased the authorization for annual
appropriations to $10 million. The training of miners was only one part
of the obligation envisioned by Congress.
With respect to the training component of our mine safety programs,
IMCC's member States are concerned that without full, stable funding of
the State Grants Program, the federally required training for miners
employed throughout the U.S. will suffer. Our experience over the past
35 years has demonstrated that the States are often in the best
position to design and offer mine safety and health training in a way
that insures that the goals and objectives of Sections 502 and 503 of
the Mine Safety and Health Act are adequately met. 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.
Thank you for the opportunity to present our views on the proposed
fiscal year 2020 budget for MSHA and the Department of Labor.
[This statement was submitted by Thomas L. Clarke, Executive
Director,
Interstate Mining Compact Commission.]
______
Prepared Statement of Morris Howard and Gail deg.
Prepared Statement of Howard and Gail Morris
overview
We are the Pennsylvania and Florida grandparents of a 6 year old
boy in Pennsylvania who was diagnosed in 2018 with Celiac Disease, a
serious autoimmune disease that afflicts about 3 million Americans. We
echo the recent testimony of Marilyn Geller, CEO of the Celiac Disease
Foundation, to the U.S. House of Representatives Committee on
Appropriations, Subcommittee on Labor, Health and Human Services,
Education, and Related Agencies, when Geller stated, ``If I leave you
with one message today, it is that Celiac Disease is, in fact, a
serious autoimmune disease that is not being taken seriously enough by
our government.'' \1\
---------------------------------------------------------------------------
\1\ Testimony of Marilyn G. Geller, CEO, Celiac Disease Foundation
(Los Angeles, CA), to the U.S. House of Representatives Committee on
Appropriations, Subcommittee on Labor, Health and Human Services,
Education, and Related Agencies, April 9, 2019, https://celiac.org/
april-2019-congressional-testimony-by-ceo-marilyn-g-geller/?
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Today, many people have conflated the popular Gluten Free diet
craze with the medically required Gluten Free diet for people with
Celiac Disease. In 1952, it was first discovered that Gluten was the
trigger of Celiac Disease. To cure Celiac Disease, we need to
fundamentally shift how our government leaders are educated on this
disease. Why? Because the current research paradigm for Celiac Disease,
one that has existed for many decades, has not delivered a cure or even
a way to treat accidental ingestion of Gluten. There is no medicine or
surgery available to treat Celiac Disease. To date, Celiac Disease
research has produced only a single approved treatment--strict
adherence to a lifelong Gluten Free diet with no exceptions! However,
as Celiac Disease researchers have found, ``[t]here is no such thing as
a gluten-free diet because of the constant risk of cross-contact with
gluten, and gluten is in 80 percent of our foodstuffs.'' \2\
Additionally, for up to 30 percent of patients, diet alone is
inadequate for remission in that it alleviates some symptoms, but does
not heal and resolve intestinal damage caused by Celiac Disease.\3\
---------------------------------------------------------------------------
\2\ Ibid, Testimony of Marilyn G. Geller, April 9, 2019.
\3\ Celiac Disease Foundation, https://celiac.org/about-celiac-
disease/poorly-responsive-celiac-disease/.
---------------------------------------------------------------------------
Anecdotally, we can attest to the treatment burden including the
constant concern over cross contamination and inclusion of our grandson
in life's numerous daily activities that involve food at home, at
school (in Kindergarten) and away from home. Research has shown that
the treatment burden of Celiac Disease is comparable to end-stage renal
disease, and the partner (or parent) burden is comparable to caring for
a patient with cancer.\4\
---------------------------------------------------------------------------
\4\ ``Patient Perception of Treatment Burden is High in Celiac
Disease Compared to Other Common Conditions,'' PMC, National Library of
Medicine, National Institutes of Health, July 1, 2014, https://
www.ncbi.nlm.nih.gov/pmc/articles/PMC4159418/.
---------------------------------------------------------------------------
While the NIH purportedly makes decisions on what diseases deserve
Federal research funding based on disease burden and prevalence, NIH
has seriously under-funded Celiac Disease over the last decade, even as
the number of Americans diagnosed with Celiac Disease has kept
increasing. Moreover, as detailed herein, NIH funding for Celiac
Disease has significantly trailed comparable diseases that have the
same or less prevalence, the same or less disease burden measurements,
as well as more than one available treatment option. That is
unacceptable! We need the U.S. government, including the NIH and CDC,
to step up and invest meaningful resources to find a cure to this
debilitating disease that directly impacts the lives of 1 percent of
Americans, in addition to their families and/or partners, on a daily
basis. Celiac Disease is so serious that it is a ``disqualifying
condition'' from service in the U.S. Military.\5\ Many years ago, I
(Howard Morris) worked at the NIH and understands the important work
that goes on there and the brilliant minds who look at solutions out of
the box.
---------------------------------------------------------------------------
\5\ U.S. Department of Defense, ``DoD Instruction 6130.03, Medical
Standards for Appointment, Enlistment, or Induction into the Military
Services,'' Section 5.12.c.(3), May 6, 2018, https://www.esd.whs.mil/
DD/.
---------------------------------------------------------------------------
suggested report language to the nih
We are respectfully asking that the Senate Appropriations Committee
include the following Report Language to the National Institutes of
Health:
``The Committee recognizes the serious issue of Celiac Disease
which affects more than 3 million Americans, and that the number
afflicted is growing. To that end, the Committee urges NIH to devote
sufficient, focused research to the study of Celiac Disease. To date,
NIH has examined symptoms of Celiac Disease and has not focused upon
the autoimmune causation underpinning the affliction. Today, the only
known treatment for this disease is a Gluten Free diet; but, recent
private sector research has revealed that such a treatment is
insufficient for many who suffer from Celiac Disease. Therefore, the
Committee directs the Office of the Director to dedicate sufficient
resources and robust investment toward multi-institute research to
better coordinate existing research and focus new research efforts
toward understanding causation and ultimately, finding a cure. The
Office of the Director is directed to submit its plan for coordination
and execution of this research to the Senate Appropriations Committee,
including the funding and FTE associated with implementation of this
plan, no later than 60 days after the date of enactment of this Act.''
What is Celiac Disease?
Answer. An Invisible Illness with a Major Impact on
People's Health
According to the University of Chicago, ``Celiac disease is an
inherited autoimmune disorder that affects the digestive process of the
small intestine. When a person who has celiac disease consumes gluten,
a protein found in wheat, rye and barley, the individual's immune
system responds by attacking the small intestine and inhibiting the
absorption of important nutrients into the body.'' \6\ ``Specifically,
the tiny fingerlike protrusions called villi on the lining of the small
intestine are lost [damaged].'' \7\ 30-40 percent of Americans carry
the genes for Celiac Disease, but only about 1 percent have Celiac
Disease. No one knows what causes Celiac Disease to activate in some
people, but not others. This is one of the key research areas that
needs funding. Additionally, Celiac research has the potential to
enhance understanding and improve therapies for other auto-immune
conditions and unlock the mysteries of the microbiome which may enable
treatment for a wide spectrum of diseases.
---------------------------------------------------------------------------
\6\ University of Chicago Celiac Disease Center, Facts and Figures,
https://www.cureceliacdisease.org/wp-content/uploads/
341_CDCFactSheets8_FactsFigures.pdf.
\7\ University of Chicago Celiac Disease Center, https://
www.cureceliacdisease.org/overview/.
---------------------------------------------------------------------------
our grandson's potential reactions to ingestion of gluten
For all Celiac Disease sufferers such as our grandson, the Gluten
protein (even in trace amounts such a crumb) can pose a severe health
risk for:
A. Short-term sickness including abdominal pain, gas, diarrhea and/
or vomiting; and
B. Long-term damage to the small intestine (which affects his
ability to absorb nutrients required for proper growth and
development), and an increased risk of other medical conditions
including, but not limited to, auto-immune thyroiditis, liver
disease, inflammatory bowel disease, osteopenia, osteoporosis,
cancer (lymphoma),\8\ and immunological scarring.\9\
---------------------------------------------------------------------------
\8\ Beyond Celiac, Fast Facts about Celiac Disease Infographic,
www.beyondceliac.org , and https://www.beyondceliac.org/60forceliac/
Fast-Facts-about-Celiac-Disease-Infographic/1448/.
\9\ Celiac Disease Foundation, ``Chronic Inflammation Permanently
Alters Immune Cells in Celiac Patients,'' https://celiac.org/about-the-
foundation/featured-news/2019/02/chronic-inflammation-permanently-
alters-immune-cells-in-celiac-patients/.
---------------------------------------------------------------------------
Food Allergies Significantly Impact Psychosocial Well-Being \10\ of
Children with Food Allergies
---------------------------------------------------------------------------
\10\ Beyond Celiac, Psychosocial Impacts of Celiac Disease
Infographic, https://www.beyondceliac.org/60forceliac/Psychosocial-
Impacts-of-Celiac-Disease-Infographic/1450/.
---------------------------------------------------------------------------
For all intents and purposes, Gluten is poison to our grandson's
body, and it is analogous to the serious danger that peanuts pose to
those who are afflicted with nut allergies. Eating Gluten does not
initiate an anaphylactic cascade reaction in Celiac Disease patients.
However, the ingestion of Gluten, even accidental ingestion of a trace
amount of Gluten, can sicken and endanger (set back) the healing of a
patient's small intestine enabled through his/her strict adherence to a
Gluten Free diet, and/or trigger new damage to the small intestine that
could take additional years to heal. There is no medicine available
(i.e., epinephrine pen for nut allergies) to take to treat any
accidental ingestion of Gluten. Airlines no longer serve nuts and
snacks out of concern and respect for people allergic to nuts, yet
there is no corresponding recognition of the effect of gluten on celiac
patients. Until our grandson was diagnosed, we had no clue or awareness
of the condition and its effects.
According to the CDC, ``Many studies have shown that food allergies
have a significant effect on the psychosocial well-being of children
with food allergies and their families.'' \11\ According to the
University of Chicago, ``Living healthily with Celiac Disease requires
skill in negotiating the everyday environment--especially for children
and teens, where most positive social encounters, from school lunches
to prom, is organized around food.'' \12\
---------------------------------------------------------------------------
\11\ U.S. Department of Health and Human Services, Centers for
Disease Control and Prevention, ``Voluntary Guidelines for Managing
Food Allergies in schools and Early Care and Education Programs''
(footnotes 39-45), https://www.cdc.gov/healthyschools/foodallergies/
pdf/13_243135_A_Food_Allergy_Web_508.pdf.
\12\ University of Chicago, 2018 Report, https://
www.cureceliacdisease.org/wp-content/uploads/
CdC_YearEnd_Report_18_WEB.pdf.
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Disparities Among Gastrointestinal Disorders in Research Funding From
NIH
To understand and correct the historically inadequate NIH funding
of Celiac Disease, it is instructive to read the peer reviewed academic
analysis published in 2017 by the American Gastroenterological
Association entitled, ``Disparities Among Gastrointestinal Disorders in
Research Funding From the National Institutes of Health,'' which found
that, out of various Gastrointestinal Disorders:
A. ``Celiac disease consistently received the lowest amount of NIH
funding over the 5-year period, at approximately $3 million per
year.''
B. ``Celiac disease consistently received the lowest amount of NIH
grants, at approximately eight grants per year.''
C. ``Barrett's esophagus, with a prevalence of approximately 1
percent, received $64.1 million over the 5-year period. Celiac
disease, with prevalence very similar to that of Barrett's
Esophagus at approximately 1 percent, received significantly
less funding over the 5-year period at $15.4 million--the
lowest amount of all the diseases studied.''
D. ``Although there is no global metric for disease importance, it is
difficult to justify on medical and scientific bases a reason
for such large and persistent funding differences. Although
Crohn's disease has many available and emerging treatment
options, celiac disease, for example, is more prevalent and has
no current treatment available to patients beyond the
burdensome gluten-free diet; however, celiac disease received
only a small fraction of the funding that Crohn's disease
received from the NIH over the 5-year period.''
E. ``In conclusion, NIH funding of GI diseases is not proportional to
disease prevalence or mortality. These data further suggest
that a few diseases, including IBS and celiac disease, are
underfunded in comparison with other diseases, especially when
the prevalence, burden, and available treatment options are
considered. Plausible reasons for this disparity include
varying numbers of established research programs to recruit
young investigators, fewer grants submitted because of a lack
of investigators in the field owing to poor funding, and narrow
expertise of peer reviewers on NIH review committees. It seems
as if the lack of funding becomes a self-fulfilling prophecy--
don't allocate more funding because there are not enough
investigations going on? In contrast with disorders with low
funding levels, ample public and private funding of Crohn's
disease allows for excellent research, which in turn, favors
more awards of research funding. This may seem circuitous;
however, funding of Crohn's disease research provides an
example of the way in which success breeds success.'' \13\
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\13\ ``Disparities Among Gastrointestinal Disorders in Research
Funding From the National Institutes of Health,'' The American
Gastroenterological Association, By: Emma Clerx, Harvard University;
Sonia Kupfer, Celiac Disease Center at University of Chicago; and
Daniel Leffler, North American Society for the Study of Celiac Disease,
Beth Israel Deaconess Medical Center; September 4, 2017, https://
www.gastrojournal.org/article/S0016-5085(17)36084-5/pdf.
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Research in Celiac Disease has lagged behind in the biomedical
imagination of other more well NIH funded research diseases, and this
has been a vicious cycle adversely impacting the Celiac Disease
research ecosystem whereby there have been fewer grant submissions,
more limited interest among young researchers as well as very limited
funding available from the private and philanthropic sectors. Public
funding is perceived as validation of the seriousness of a disease and
its research needs. Absent public funding validation, a vacuum is
created, which causes private funding to be scarce. In contrast, the
NIH funded Crohn's disease research model is an example of ``success
breeds success'' that has created a positive feedback loop (network
effects) with ongoing and meaningful government validation, more
established research programs recruiting more young investigators,
increased grant submissions, increased private sector funding, and
increased philanthropic funding.
For fiscal year 2020, we are respectfully requesting that NIH model
its funding of Celiac Disease research on its funding model and scale
for research on Crohn's Disease. In spite of a lower number of disease
specific mortalities as well as many available and emerging treatment
options, Crohn's disease received about 40 NIH grants per year
averaging about $16 million annually from 2011-2015, in comparison to
Celiac Disease which received about 8 NIH grants per year averaging
about $3.0 million annually from 2011-2015. In 2018, the NIH RePORT
suggests that Celiac Disease research received a modest increase to 13
grants totaling approximately $4.7 million. In contrast, in 2018, NIH
research funding for Crohn's disease encompassed 210 grants totaling
$69 million.
Notwithstanding the Herculean efforts by some brilliant, small and
under resourced research teams and advocacy groups, the paucity of NIH
funding has created a vacuum and stifled innovation in the efforts to
treat and cure Celiac Disease. This can change in fiscal year 2020 with
meaningful NIH funding that validates research ready initiatives at
multi-institute translational research centers including at the
University of Chicago Celiac Disease Center, Celiac Disease Center at
Columbia University, the Harvard Medical School Celiac Research Program
and the Children's Hospital of Philadelphia Center for Celiac Disease.
______
Prepared Statement of the National Alliance for Caregiving
Chairman Blunt and Ranking Member Murray, I respectfully submit
this testimony today on behalf of the nearly 44 million Americans who
provide support to people living with chronic health conditions,
medical complexity, disabilities, or other long-term care needs as
family caregivers.\1\ The National Alliance for Caregiving proposes the
following support:
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\1\ In general, when NAC uses the term ``family caregiver,'' we
rely on the definition from the recently enacted RAISE Family
Caregivers Act, which describes a caregiver as ``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.'' From
Public Law 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).
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--Support for the Older Americans Act Title III, Part E National
Family Caregiver Program, administered by the Administration
for Community Living and the Administration on Aging as
follows: (a) an increase of 20 percent to $226 million for the
National Family Caregiver Support Program; (b) an overall
increase of at least 12 percent for other parts of the OAA
Title III; and (c) an increase of at least 12 percent increase
for Title VI, Part C, the Native American Caregiver Support
Program.
--Additional, modest funding for the ``Recognize, Assist, Include,
Support, and Engage Family Caregivers Act of 2017'' (RAISE
Family Caregivers Act).
--Create a National Resource Center on Family Caregiving under the
Administration for Community Living with annual funding of at
least $500,000.
Estimates indicate that if we were to replace each family
caregiver, friend, or neighbor, with a paid direct care worker, it
would cost our economy $470 billion annually.\2\ This care, while
typically provided without financial support, is not without cost.
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\2\ Reinhard, S., Feinberg, L. F., Choula, R., & Houser, A.,
Valuing the Invaluable 2015 Update: Undeniable Progress, but Big Gaps.
(2015), at https://www.aarp.org/ppi/info-2015/valuing-the-invaluable-
2015-update.html.
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Since 1996, the National Alliance for Caregiving has worked to
identify credible policy solutions that work for individuals as well as
the public and private sectors of the United States. We conduct public
policy research across the lifespan. We provide technical assistance to
a virtual network of State/local caregiving advocates representing over
27 communities. We are also the founder and Secretariat for the
International Alliance for Carer Organizations (IACO), where we join 16
other nations represented by nonprofit organizations around the world
to determine how to better support the contributions of caregivers to
our societies. It is with this background that we request the following
support.
i. support for the older americans act
The Older Americans Act offers the most comprehensive support for
family caregivers of adults. The program provides grants to States and
territories to create innovative programs to empower caregivers to care
for their families at home for long as possible. By providing
information, counseling, training, respite care, and services the
program reduces caregiver depression, anxiety, and stress, enables
caregivers to provide care longer and thereby avoiding or delaying the
need for costly hospital and institutional care. Given the aging of
America and shrinking family sizes, we respectfully request: (1) an
increase of 20 percent to $226 million for the National Family
Caregiver Support Program under Title III, Part E of the Older
Americans Act and administered by the Administration for Community
Living; (2) an overall increase of at least 12 percent for other parts
of the OAA Title III, which provide many of the supports and services
on which both older adults and their caregivers rely, such as respite
services, adult day care and much more; and (3) an increase of at least
12 percent increase for Title VI, Part C, the Native American Caregiver
Support Program.
ii. continued support for the raise family caregivers act
To date, the Advisory Committee for this Act has yet to convene
publicly, and as we approach the law's anticipated sunset in 2021, we
request additional, modest funding that will allow this initiative to
continue toward a meaningful national strategy for caregivers. The
momentum we see in other communities--cancer, Alzheimer's and
dementia--has come from a unified national strategy with clearly
identified goals for the community through like committees such as the
National Alzheimer's Project Act Advisory Committee.
iii. creation of a national resource center on family caregiving
To that same effort, under the auspices of the Administration for
Community Living, we ask that the Subcommittee direct the Assistant
Secretary for Aging to establish and operate through a grant or
contract a National Resource Center on Family Caregiving with annual
funding of at least $500,000. This Center would conduct research;
provide training, technical assistance, and information to State and
local programs; analyze policy, programs and practices and share best
practices with the aging network; and provide support to the National
Family Caregiver Support Program. Activities could promote quality and
improvement in the support provided to family and other informal
caregivers of older individuals, including for rural caregivers and
caregivers for those with cognitive impairment such as dementia.
The National Resource Center on Family Caregiving could align
information about existing support and resources for family caregivers
and reduce inefficiencies in Federal programs. For example, some
programs support caregivers only via the beneficiary (such as the
Medicaid Home-and-Community-Based Waivers programs) and others support
the caregiver directly without connection to the health or social care
system they support (such as the National Family Caregiver Support
Program and the Lifespan Respite Programs).
when supported, family caregivers improve population health and reduce
systems costs
Decades of research make clear that family caregivers are the
predominant providers of long-term services and supports to older
adults and persons with disabilities of all ages. More than half (57
percent) of America's caregivers provide medical/nursing to individual
patients, through medical/nursing tasks such as giving injections, tube
feedings, catheter and colostomy care, and other complex care
responsibilities often without prior training or support.\3\ Many
caregivers help with managing medication (46 percent) and
transportation (78 percent). Many caregivers have financial, emotional,
and psychosocial costs that impact their ability to provide care and to
continue self-care. Caregivers often face high out-of-pocket costs at
an average of $7,000 per year, with a higher strain on African American
and Latino families.\4\ While the need for caregivers increases, the
number of available caregivers is in decline--precisely when their
services are needed now more than ever.\5\
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\3\ Id.
\4\ See Family Caregiving and Out-of-Pocket Costs: 2016 Report,
AARP, available at https://www.aarp.org/content/dam/aarp/research/
surveys_statistics/ltc/2016/family-caregiving-
costs.doi.10.26419%252Fres.00138.001.pdf.
\5\ Eldercare Workforce Alliance. (2011). ``3.5 Million Workers
Needed by 2030 to Care for Older Adults, Current Levels of Workforce
Already Stretched.'' Available at: https://eldercareworkforce.org/
newsroom/press-releases/article:3-5-million-workers-neededby-2030-to-
care-for-older-adults-current-levels-of-workforce-already-stretched/.
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When family caregivers receive support, we know they can be active
partners in lowering health system costs, improving quality of care,
and improving the health of populations. For example, academic research
has shown that caregivers can reduce avoidable hospital readmissions in
discharge from hospital to home by 25 percent at 90 days and 24 percent
at 180 days.\6\ For medically complex conditions, such as dementia,
caregivers can help an older adult to live longer in the community and
delay the costs of institutionalization.\7\ Caregivers support the aims
of health reform and prevent an overmedicalization of our society--
allowing the people closest to us to provide care as we age and manage
disease.
---------------------------------------------------------------------------
\6\ Rodakowski, et al. ``Caregiver Integration During Discharge
Planning for Older Adults to Reduce Resource Use: A Metaanalysis,''
Journal of the American Geriatric Society (April 2017), at http://
onlinelibrary.wiley.com/doi/10.1111/jgs.14873/full.
\7\ See e.g., Mittleman, et al. ``An intervention that delays
institutionalization of Alzheimer's disease patients: treatment of
spouse-caregivers,'' Gerontologist (1993), https://
www.ncbi.nlm.nih.gov/pubmed/8314099.
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Thank you for the opportunity to provide testimony to the
Subcommittee.
[This statement was submitted by C. Grace Whiting, J.D., President
and CEO, National Alliance for Caregiving.]
______
Prepared Statement of National Alliance for Eye and Vision Research
executive summary
NAEVR, on behalf of the vision community, thanks Congress,
especially the House and Senate Appropriations Subcommittees on Labor,
Health and Human Services, and Education (LHHS), for strong bipartisan
support for the National Institutes of Health (NIH) funding increases
from fiscal year 2016 through fiscal year 2019. The $9 billion increase
has helped the agency regain ground lost after years of effectively
flat budgets. In fiscal year 2020, NAEVR urges Congress to appropriate
at least $41.6 billion for NIH, a $2.5 billion or 6.4 percent increase
over the fiscal year 2019 program level. This increase would allow for
meaningful growth above inflation in the base budget to support
promising science across all Institutes and Centers (I/Cs), as well as
ensure that funding from the Innovation Account established through the
21st Century Cures Act would supplement NIH's base budget, as intended,
through dedicated funding for specific programs.
With respect to I/C funding, NAEVR thanks the Senate Subcommittee
for its past efforts to ensure inflationary increases. For fiscal year
2020, NAEVR urges Congress to appropriate at least $850 million for the
National Eye Institute (NEI), a $53 million or 6.4 percent increase
over enacted fiscal year 2019. This would allow for biomedical
inflation of 2.8 percent plus meaningful growth. Despite the total
fiscal year 2016-2019 funding increases of $120 million, NEI's fiscal
year 2019 enacted budget of $797 million is just 14 percent greater
than the pre-sequester fiscal year 2012 budget of $702 million.
Averaged over the seven fiscal years, the 2 percent annual growth rate
is less than the average annual biomedical inflation rate of 2.8
percent, thereby eroding purchasing power.
The NEI, which just concluded the 50th anniversary of its creation
by Congress in 2018, is the world leader in sight-saving and vision-
restoring research. Congress must ensure robust NEI funding to address
the challenges of The Decade of Vision 2010-2020--as recognized by
Congress in S. Res. 209 in 2009--which include an aging population,
disproportionate risk/incidence of eye disease in fast-growing minority
populations, and the visual impact of numerous chronic diseases and
their therapies.
We must maintain the momentum of vision research since vision
health is vital to overall health and quality of life. Since the United
States is a world leader in vision research and in training the next
generation of vision scientists, the very health of the global vision
research community is at stake.
nei leads in genetic and regenerative medicine research
As recently as a March 21, 2018, NEI 50th Anniversary Congressional
Reception, NIH Director Francis Collins, MD, PHD stated the following
about the NEI:
``Due to the architecture, accessibility, and the elegance of the
eye, vision research has always been a few steps ahead in
biomedical research. Understanding the genetic basis of eye
diseases has led the way for understanding the genetic basis of
many common diseases.''
The NEI has been a leader in genetics/genomics research and
regenerative medicine.
Genetics/Genomics:
--Vision researchers worldwide participating in NEI's Glaucoma
Genetics Collaboration Heritable Overall Operational Database
(NEIGHBORHOOD) Consortium have identified 133 genetic variants
that predict within 75 percent accuracy a person's risk for
developing glaucoma related to elevated intraocular pressure
(IOP). Among the 133 variants, 68 had not been previously
linked to IOP, and their loci point to cellular processes, such
as lipid metabolism and mitochondrial function, that contribute
to IOP. By understanding these cellular processes that can
increase IOP and cause optic nerve damage, clinicians may be
able to make an earlier diagnosis and researchers may be able
to develop neuroprotective therapies to potentially halt
disease progression.
--NEI-funded research has also made discoveries of dozens of rare eye
disease genes possible, including the discovery of RPE65, which
causes congenital blindness called Leber congenital amaurosis
(LCA). In late 2017, based on NEI's initial efforts, the Food
and Drug Administration (FDA) approved a gene therapy for this
condition. These gene-based discoveries are forming the basis
of new therapies that treat the disease or potentially prevent
it.
Regenerative Medicine:
--NEI is at the forefront of regenerative medicine with its Audacious
Goals Initiative in Regenerative Medicine Initiative (AGI),
which launched in 2013 with the goal of restoring vision.
Initially asking a broad constituency of scientists within the
vision community and beyond to consider what could be done if
researchers employed this new era of biology, the AGI currently
funds major research consortia that are developing innovative
ways to image the visual system. Researchers can now look at
individual nerve cells in the eyes of patients in an
examination room and learn quite directly whether new
treatments are successful. Another consortium is identifying
biological factors that allow neurons to regenerate in the
retina. And the AGI is gathering considerable momentum with
current proposals to develop disease models that may result in
clinical trials for therapies within the next decade.
--NEI plans a first-in-human clinical trial that would test a stem
cell-based therapy from induced pluripotent stem cells (iPSC)
to treat geographic atrophy, also known as the ``dry'' form of
Age-related Macular Degeneration (AMD), the leading cause of
vision loss among people age 65 and older. This trial converts
a patient's own blood cells to iPS cells which are then
programmed to become retinal pigment epithelial (RPE) cells,
which nurture the photoreceptors necessary for vision and which
die in geographic atrophy. Bolstering remaining photoreceptors,
the therapy replaces dying RPE with iPSC-derived RPE.
the nation's investment in the nei results in new therapies to treat
major eye diseases
Speaking after Dr. Collins at the March 21, 2018, NEI 50th
anniversary Congressional Reception, NEI Director Paul Sieving, MD, PhD
observed that:
``As we look back 50 years, we remember times when people had
untreatable eye diseases. These included AMD, diabetic
retinopathy, and glaucoma. These were blinding conditions, and
doctors had little more than hope to offer patients.''
The Federal commitment--made in 1968 when President Lyndon Johnson
signed legislation creating the NEI--has made possible treatments and
therapies for the very diseases that Dr. Sieving cited as previously
resulting in blindness or severe vision loss:
--AMD: The treatment of the ``wet'' form of AMD has made great
strides resulting from use of Anti-Vascular Endothelial Growth
Factor (VEGF) therapies. Last year, the NEI launched the AMD
Ryan Initiative Study (ARIS), a prospective international study
of patients that uses the latest advances in retinal imaging to
identify biomarkers of the disease and targets for early
therapeutic interventions.
--Diabetic Retinopathy: Over the span of nearly 50 years, NEI has
funded a number of randomized controlled trials (RCTs), which
have led to major vision health improvements. In the 1960s,
about half of patients with diabetic retinopathy were blind
within 5 years of diagnosis. NEI-sponsored clinical trials-
starting in the early 1970s with the Diabetic Retinopathy Study
and most currently with the Diabetic Retinopathy Clinical
Research Network-have reduced the incidence of severe vision
loss from diabetic retinopathy by 90 percent.
--Glaucoma: As IOP appears to be the overriding factor that that
determines whether someone develops glaucoma, NEI research into
primary open-angle glaucoma (POAG), the most common form of the
disease, has resulted in two FDA-approved drug therapies that
add to those that have already emerged from NEI research.
Targeting the eye's trabecular meshwork-which is one of the
pathways responsible for regulating fluid flow within the eye-
the new generation of therapies reflects an expanding menu of
drugs, potentially in combination therapy, that lower IOP and
better meet the needs of patients.
Critical to the diagnosis and monitoring of treatments for these
eye diseases is Optical Coherence Tomography (OCT), which is a non-
invasive, high-resolution imaging technology that displays a three-
dimensional cross-sectional view of the layers of the retina. Developed
over 25 years with $423 million in NIH and National Science Foundation
(NSF) funding, OCT has enabled better personalization of eye care to
facilitate more efficient use of effective but costly drug therapies. A
December 2017 American Journal of Ophthalmology article reported that
OCT saved Medicare $9 billion and patients $2.2 billion in co-pays by
reducing unnecessary injections. As the technology continues to be
applied to new medical conditions, such as Alzheimer's disease and
Parkinson's disease, it supports a private commercial market of $1
billion and more than 16,000 high-paying jobs. https://doi.org/10.1016/
j.ajo.2017.09.027.
congress must robustly fund the nei as it addresses the increasing
burden of vision impairment and eye disease
NEI's fiscal year 2019 enacted budget of $797 million is just 0.55
percent of the $145 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 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 $2.40 per-person, per-
year for vision research, while the cost of treating low vision and
blindness is at least $6,680 per-person, per-year. [http://
costofvision.preventblindness.
org/]
In a May 2016 JAMA Ophthalmology article, NEI-funded researchers
reported that the number of people with legal blindness will increase
by 21 percent each decade to 2 million by 2050, while best-corrected
visual impairment will grow by 25 percent each decade, doubling to 6.95
million people--with the greatest burden affecting those 80 years or
older. [http://jamanetwork.com/journals/jamaophthalmology/article-
abstract/2523780?resultClick=1]
In an August 2016 JAMA Ophthalmology article, the Alliance for Eye
and Vision Research (AEVR, NAEVR's educational foundation) reported
that a majority of Americans across all racial and ethnic lines
describe losing vision as having the greatest impact on their day-to-
day life. Other studies have reported that patients with diabetes who
are experiencing vision loss or going blind would be willing to trade
years of remaining life to regain perfect vision, since they are
concerned about their quality of life. [http://jamanetwork.com/
journals/jamaophthalmology/article-abstract/2540516?resultClick=1]
Investing in vison 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 healthcare
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.
Congress demonstrated strong support for vision research with the
creation of the NEI and recognition this past year of its
accomplishments and current/future challenges. Without robust funding,
however, the NEI may not be able to fund breakthrough research and to
continue U.S. leadership in vision research and training.
In summary, NAEVR requests fiscal year 2020 NIH funding of at least
$41.6 billion and NEI funding of $850 million.
NAEVR, which serves as the ``Friends of the NEI,'' is a 501(c)4
non-profit advocacy coalition comprised of 50-plus professional
(ophthalmology and optometry), patient and consumer, private funding
foundation, and industry organizations involved in eye and vision
research. Visit NAEVR's Web site at www.eyeresearch.org.
______
Prepared Statement of the National Alliance for Public Charter Schools
Mr. Chairman and Members of the Subcommittee, I am pleased to
present the views of the National Alliance for Public Charter Schools
on the fiscal year 2020 appropriation for the Charter Schools Program
(CSP) operated through the U.S. Department of Education. I thank the
Members for increasing the CSP appropriation from $400 million in
fiscal year 2018 to $440 million in fiscal year 2019. The CSP plays a
crucial role in expanding educational options for families and in
improving public school outcomes nationwide. For fiscal year 2020, the
National Alliance endorses the Administration's request of $500 million
for the CSP. At a $500 million funding level, we concur with the
Administration that, given the current needs of charter schools, up to
$125 million should be available for charter school facilities, through
the Credit Enhancement and State Facilities Incentive Grants programs.
This amount would help put significant resources towards meeting the
demand for adequate facilities for all charterschools, a need we are
seeing more and more as the public charter sector matures and evolves.
Further, we recommend that the appropriation allow up to $150 million
to be available for grants to charter management organizations (CMOs)
for the replication and expansion of effective charter models,
strengthening another important element of the CSP. We request that the
appropriation provide for these allocations, rather than adhering
strictly to the authorizing statute, consistent with the Appropriations
Committees' approach over many years.
Demand for seats in public charter schools continues to
significantly exceed supply. In fact, surveys indicate that some 3.3 to
5.3 million additional students would attend a charter school if space
were available in a convenient location. The increase we are
recommending for the CSP would not meet the entire demand for charters,
but it would enable continued progress in providing academic options
and opportunity to the some of the Nation's most disadvantaged
students.
the growth of public charter schools and the impact of csp
The first charter school opened in 1992 and today more than 7,000
public charter schools operate in 44 States, the District of Columbia,
Puerto Rico, and Guam, serving approximately 3.2 million PreK--12
students. Between the fall of 2016 and the fall of 2017, more than 300
new charter schools opened across the country and total enrollment grew
by more than 150,000 students. Charter schools now enroll some 6
percent of K-12 students nationally. We estimate that the CSP provided
start-up, replication, or expansion funds to 60 percent of all charter
schools that opened between school years 2006-2007 and 2013-2014. The
charter school sector could not have grown and prospered as it did
without this Federal support.
charter school performance
The charter school movement has been a leader in driving
innovation, providing students and families with wider choices within
the public school system, and producing results. Our schools have
demonstrably narrowed achievement gaps, increased graduation rates, and
helped revitalize communities. As in any other area of education, not
all charter schools have been equally effective, and, by design, States
and charter school authorizers have closed the failing ones. But
numerous studies demonstrate that the charter school movement,
considered as a whole, has been a large net plus for America's
students.
For example, a major study, completed in 2015 by the Center for
Research on Education Outcomes (CREDO) at Stanford University, covering
41 urban communities in 22 States, found:
--Charter school students gained 40 additional days of learning in
math and 28 days in reading per year, compared to their peers
in non-charter public schools.
--Four or more years of enrollment in an urban charter school
resulted in 108 additional days of learning in math and 72 days
in reading, compared to non-charter public schools.
--In urban charter schools, low-income Hispanic students gained 48
additional days or learning per year in math and 25 days in
reading. Low-income African-American students gained 59 days in
math and 44 days in reading. Hispanic students who were
identified as English learners gained 72 additional days in
math and 79 in reading.
Other studies have also reported very positive findings.
charter school facilities needs
As I noted earlier, the National Alliance endorses the
Administration's proposal that up to $125 million of the fiscal year
2020 appropriation be available for the two CSP programs that address
charter school facilities needs: Credit Enhancement for Charter School
Facilities and the State Facilities Incentive Grants (SFIG). These
programs take complementary approaches to addressing what is often a
significant barrier to a charter school opening and serving children.
Our schools have generally not had access to the funding sources
that support the facilities needs of other public schools, such as
municipal bonds, property tax revenues, and State school facilities
programs. They have had to scrape by in buildings not designed for
learning, or use funds to meet facilities needs that should have been
available for academics, or they simply never open at all, only for
lack of an adequate building. Access to buildings is also a significant
impediment to charter school growth and reaching students in
underserved communities. Unlike most Federal programs, Credit
Enhancement and SFIG also generate additional funding: Credit
Enhancement leverages $16 for every Federal dollar invested andhe
Incentive Grants require a State match.
the need for more flexible appropriations language
The National Alliance is aware that ED is working with the
appropriators on reallocation of some of the fiscal year 2019 CSP
appropriation, an issue that arose when a few of the larger States,
which had been expected to apply under the State Entities program, did
not apply for fiscal year 2019 awards. Under the authorizing act, the
Department must hold a new State Entities competition each year, even
though the number of States that will be ready for a new grant in a
particular year will vary greatly. If the estimates are off, there can
be too little or too much money appropriated for the program. What
happened this year does not mean the demand for the
State Entities program has diminished. Rather, we believe that what
happened calls for making the appropriations language flexible, giving
ED some room to allocate funds in response to shifts in the number of
States applying from year to year. We recommend that the appropriators
provide that flexibility in the fiscal year 2020 appropriation, as it
has in prior years, by only specifying floors or ceilings for the CMO
program and facilities programs.
conclusion
The National Alliance takes pride in the accomplishments of public
charter schools over the past quarter century. The successes of charter
school could not have been achieved without the CSP, which continues to
be a vital source of support for creating high-quality charter schools,
ensuring the availability of adequate and helping us to meet more of
the demand. Toward those ends, we urge the Congress to provide a $500
million appropriation for the CSP in fiscal year 2020.
[This statement was submitted by Nina Rees, President and CEO,
National
Alliance for Public Charter Schools.]
______
Prepared Statement of the National Alliance on Mental Illness
Chairman Blunt, Ranking Member Murray and distinguished members of
the Subcommittee, on behalf of NAMI, the National Alliance on Mental
Illness, I am pleased to offer our views on the Subcommittee's fiscal
year 2020 bill. NAMI is the Nation's largest grassroots mental health
organization dedicated to building better lives for the millions of
Americans affected by mental illness. NAMI advocates for improved
research and innovation, increased access to care, and comprehensive
services and supports for individuals living with mental health
conditions.
high cost of mental illness in america in the u.s.
Approximately 1 in 5 Americans live with a mental health
condition--approximately 46.6 million people in 2017.\1\ Individuals
who live with mental health conditions are our neighbors, family
members, and friends. They contribute to all sectors of the U.S.
economy--yet the social and economic costs associated with mental
health conditions is devastating. According to a 2016 study, mental
illness topped the list of the costliest conditions in the U.S. at $201
billion in 2013, the year examined.\2\ While this financial cost is an
incredible burden on U.S. healthcare spending, the personal cost of
untreated mental illness to individuals and families is much more
devastating. At NAMI we hear from countless individuals who share their
own stories of a family member or friend who couldn't reach their full
potential because of a lack of necessary, innovative treatment. Some
also carry the burden of someone lost to suicide. In fact, each year
47,173 Americans die by suicide, and it's currently the 10th leading
cause of death in the United States.\3\ Additionally, in 2015, suicide
and self-injury cost the U.S. $69 billion.\4\ As you can see, the work
of this Subcommittee and your commitment to adequate investment in
innovative mental health research, and first-class treatments and
supports is vitally important to keep America strong and save American
lives.
---------------------------------------------------------------------------
\1\ Gordon, J. (2018, May 15). National Institute of Mental Health.
Prevalence of Mental Illness. Retrieved from: https://www.nimh.nih.gov/
health/statistics/mental-illness.shtml. Date: 3 April 2019.
\2\ Roehrig, C. Mental Disorders Top The List of The Most Costly
Conditions in The United States: $201 Billion, Health Affairs, 2016.
DOI:10.1377/hlthaff.2015.1659.
\3\ Suicide Statistics. American Foundation for Suicide Prevention.
Retrieved from: https://afsp.org/about-suicide/suicide-statistics/.
Date: 2 April 2019.
\4\ Ibid.
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fiscal year 2019 labor-hhs appropriations bill
NAMI would like to thank the Chairwoman, Ranking Member, and
Subcommittee for the bipartisan effort on the fiscal year 2019 enacted
bill, and the critical investments that were made for mental health
research and treatment. We are especially grateful for the $2 billion
budget increase for the National Institutes of Health (NIH), the $101
million increase for the National Institute of Mental Health (NIMH),
the $29 million increase for the BRAIN Initiative, and the $86 million
increase for the All of Us precision medicine study. NAMI is also very
appreciative of the additional $150 million for the ongoing Certified
Community Behavioral Health Clinics (CCBHCs).
In order to build on this progress, it is imperative for Congress
to come to a two-year budget agreement to lift the current Budget
Control Act (BCA) caps on Non-Defense Discretionary (NDD) spending to
avoid any future threat of sequestration. In the absence of an
agreement, the limits of NDD spending will drop to unsustainable levels
and will result in deep cuts to mental illness research and services.
nami fiscal year 2020 funding priorities for the national institute of
mental health
As a member of the Ad Hoc Group for Medical Research Funding, NAMI
endorses the goal of at least $41.6 billion for the National Institutes
of Health (NIH), a $2.5 billion increase in base funding for the
agency. Additionally, NAMI supports the current NIMH strategic plan and
its high-level strategic objectives.
Advancing Services and Intervention Research & Investing in Early
Psychosis Prediction and Prevention (EP3)
Approximately 100,000 young Americans experience a first episode of
psychosis (FEP) each year. Intervening early is critical to altering
the downward trajectory associated with psychosis. Accordingly, NAMI
prioritized support for the NIMH Recovery After an Initial
Schizophrenia Episode (RAISE) Project, which developed Coordinated
Specialty Care (CSC) programs that are helping people experience
recovery. We urge further investment into maintaining CSC's positive
treatment and quality-of-life outcomes over the long-term. NAMI also
supports NIMH's Early Psychosis Prediction and Prevention (EP3)
initiative, which shows promise in detecting risk for psychotic
disorders and reducing the duration of untreated psychosis in
adolescents who have experienced early psychosis.
Advancing Precision Medicine
NAMI remains supportive of the NIMH Research Domain Criteria (RDoC)
and its efforts to build a classification system based on underlying
biological and behavioral mechanisms, rather than on symptoms. Through
continued development, we believe RDoC will provide the precision
currently lacking in traditional diagnostic approaches to mental health
conditions.
nami fiscal year 2020 funding priorities for samhsa programs
NAMI supports programs at the Center for Mental Health Services
(CMHS) at SAMHSA that are focused on replication and expansion of
effective, evidence-based interventions to serve children and adults
living with mental health conditions. We are grateful for increases in
recent years for the Community Mental Health Services Block Grant
(MHBG) to its current level of $722.6 million.
Additionally, NAMI strongly supports the 10 percent set-aside in
the MHBG for evidence-based programs that address the needs of
individuals with early serious mental illness. As noted above, NAMI
endorses the Coordinated Specialty Care (CSC) model for collaborative,
recovery-oriented care. This evidence-based approach emphasizes shared
decisionmaking and should be the priority program for receiving funding
from this set-aside.
Request for Consideration of additional set-aside for Crisis Care
Services
As the Subcommittee is aware, there is an increased need for mental
health crisis care services to improve our Nation's mental health and
combat the suicide and opioid epidemics. As such, NAMI has submitted a
funding request for an additional $35 million to the MHBG to fully-fund
a 5 percent set-aside for Crisis Care Services. If funded, we request
the array of crisis care services to include centrally deployed 24/7
mobile crisis units, short-term residential crisis stabilization
programs, the implementation of evidence-based protocols for treating
individuals at risk of suicide, and regional or statewide crisis call
centers coordinating in real time.
Additional NAMI fiscal year 2020 funding priorities at CMHS
We support continued funding for all current programs at CMHS,
including $125 million for Children's Mental Health Services, $14.3
million for Criminal and Juvenile Justice Programs, $71 million for
Project AWARE State grants, $64.4 million for the Projects for
Assistance in Transition from Homelessness (PATH) program, $33.4
million for the Treatment Systems for Homeless portfolio, and $15
million each for the continuation of the Assisted Outpatient Treatment
(AOT) pilot program and Assertive Community Treatment (ACT) program.
NAMI respectfully requests the Subcommittee consider a $68 million
increase to the National Suicide Prevention Lifeline, for a total of
$80 million and fully fund all Garrett Lee Smith (GLS) suicide
prevention grants consistent with fiscal year 2019, enacted.
Additionally, NAMI is concerned about the proposed elimination of the
Primary and Behavioral Health Care Integration (PBHCI) program in the
fiscal year 2020 President's Budget (PB) Request. The PBHCI is a
critical program which supports collaboration and infrastructure that
increases primary and wellness care for children and adults with
serious mental health conditions, and we strongly encourage the
restoration of funding at $51.9 million.
Health Resources and Services Administration (HRSA)
NAMI recognizes the important work of HRSA, and therefore requests
$36.9 million for Mental and Behavioral Health, $75 million for the
Behavioral Health Workforce, and $10 million for Increasing Access to
Pediatric Mental Health Care-all level to fiscal year 2019, enacted
funding. These programs are crucial to supporting development of the
mental health workforce.
Fully Funding the 21st Century Cures Act
The Helping Families in Mental Health Crisis Act as included in the
21st Century Cures Act, Public Law 114-255 was a landmark piece of
legislation and represented a substantial leap forward for Americans
who live with mental illness. NAMI respectfully asks the Subcommittee
to fully fund all programs authorized including $6 million for Adult
Suicide Prevention programs and $2.5 million for Strengthening
Community Crisis Response Systems. These programs, if funded, will
ensure we can capitalize on the advancements put forth in this bill,
and will help more Americans living when mental health conditions
realize recovery is possible.
conclusion
NAMI would like to express our gratitude to the Chairman, the
Ranking Member and the Subcommittee for your investments in the
necessary research, treatments, services and supports for Americans
living with mental health conditions.
[This statement was submitted by Angela Kimball, Acting Chief
Executive Officer, National Alliance on Mental Illness.]
______
Prepared Statement of the National Area Health
Education Centers Organization
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, thank you for the opportunity to provide testimony on
behalf of the National AHEC Organization (NAO). The NAO is the
professional organization that represents Area Health Education Centers
(AHECs) across the country. We support advances in the AHEC Network to
improve health by leading the Nation in recruiting, training, and
retaining members of a diverse health workforce in underserved
communities. As a member of the Health Professions and Nursing
Education Coalition (HPNEC), NAO is pleased to recommend $690 million
for the health professions training programs under Title VII and VIII
of the Public Health Service Act that are administered by the Health
Resources and Services Administration (HRSA). Of this amount, the NAO
recommends $67 million in fiscal year 2020 for the Area Health
Education Centers program.
The AHEC program was originally authorized at the same time as the
National Health Service Corps (NHSC) in 1971. The originating
legislation sought to provide primary care providers for Community
Health Centers (CHCs) and other direct providers of healthcare services
for underserved areas and populations. The creators of the legislation
that fostered the AHECs intended for AHECs to be the vehicle to recruit
health providers into primary healthcareers, diversify the workforce,
and develop a passion for service to the underserved in these future
providers. Today, as intended, AHECs develop and support the community
based training of health professions students in rural and underserved
areas. With more than 300 AHECs serving nearly 85 percent of all the
counties in the United States and the District of Columbia, the AHEC
network recruits a diverse and broad range of students into
healthcareers and provides continuing education resources that improve
the quality of community-based healthcare for underserved populations
and areas. Nationwide, over 358,797 students and health professionals
participated in our healthcareer opportunities last year. Our training
sites included 3,561 primary care settings, 3,968 sites in medically
underserved communities, and 2,620 sites in rural areas. The AHEC
network is enabled to successfully perform these education and training
services through its collaborative partnerships with CHCs, the NHSC,
Rural Health Clinics, Critical Access Hospitals, Tribal Health Centers,
and State and local public health departments.
The AHEC network is a part of an critical pipeline that fuels the
recruitment, training, distribution, and retention of a national health
workforce. At a time where the Association of American Medical Colleges
projects our Nation to have a shortage of nearly 120,000 physicians by
2030, AHECs stands as a central access points in meeting this demanding
shortage area. Primary care practitioners are the front-line in
prevention of disease and providing cost savings in the United States
healthcare system. In recognizing this, the AHEC program engages in
pre-pipeline, pipeline, and post-pipeline activities that guide
individuals through healthcareers pathways and beyond, with a special
emphasis on primary care doctors. In 2018, AHECs introduced nearly
183,090 students, ranging from high school to collegiate status, to
careers in the health professions and health workforce. The AHEC
network facilitated 331.706 rotations and 1,430 residency rotations.
Through training in our AHECs 20,000 students were placed in rural and
underserved communities and of this number 11,559 medical students,
4,021 were associated health professions students, 3,936 were nursing
students, 384 were dental students, and 100 studied behavioral health.
Additionally AHECs were responsible for training 144,001 professionals
through our continuing education programs. It is these facts that make
AHECs integral in the recruitment, training, and retention of the
primary care workforce.
AHECs have a continual focus on improving the healthcare system by
working with 120 medical schools, 600 nursing and allied health
schools, healthcare settings like CHCs, behavioral health practices,
and community-based organizations across the Nation. Through these
longstanding partnerships, the AHECs employ traditional and innovative
approaches to develop and train a diverse healthcare workforce prepared
to deliver culturally appropriate, high-quality, team-based care for
rural and underserved communities.
One such innovative program is AHEC Scholars, launched in 2018 to
address healthcare quality in rural and underserved areas by using
interdisciplinary curricula to implement a defined set of clinical,
didactic, and community-based activities. Spanning 2 years, AHEC
provides its Scholars with 160 hours of experiential and didactic
education to supplement their program's curricula. The educaton focuses
on six vitally important core topic areas: interprofessional education,
behavioral health integration, social determinants of health, cultural
competency, practice transformation, and current/emerging health
issues. AHECs are embedded in the communities they serve, positioning
them to respond rapidly to emergent training needs of health
professionals, health professions students, and inter-professional
teams on issues associated with natural disasters, disease outbreaks
(e.g. Zika), and substance use disorders.
Chairman Blunt, thank you and the committee for the opportunity to
present the views of the National AHEC Organization. Allow me to re-
emphasize the funding request of $67 million for the Area Health
Education Centers program. As the committee finalizes its
recommendation the NAO stands ready as resource.
[This statement was submitted by Dwain Harris, Chief Executive
Officer,
National Area Health Education Centers Organization.]
______
Prepared Statement of the National Association for State
Community Services Programs
As Executive Director of the National Association for State
Community Services Programs (NASCSP), I am pleased to submit testimony
in support of the Department of Health and Human Services' (HHS)
Community Services Block Grant (CSBG). We are seeking a fiscal year
2020 appropriation level of $775 million for CSBG. NASCSP believes that
this funding level will ensure that States and local communities have
the resources they need to lead the fight against poverty through
innovative, effective, and locally tailored anti-poverty programs that
help communities, individuals, and families achieve economic security.
NASCSP is the member organization representing the State CSBG
Directors in all 50 States, Washington D.C., and 5 U.S. territories on
issues related to CSBG and economic opportunity. NASCSP also provides
training and technical assistance to help State Offices implement
program management best practices and develop evidence-based policy.
The State Offices represented by our organization would like to thank
the members of this committee for their support of CSBG over the years,
particularly in the fiscal year 2019 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 20
years in various roles within the CSBG network. However, CSBG is
arguably one of the most misunderstood programs within the Federal
Government. CSBG is often confused with other programs and there is
substantial misinformation about how the program operates. I would like
to highlight three main points in my testimony:
1. The structure of CSBG empowers States and local communities to
take the lead on poverty.
2. The robust local, State, and Federal accountability measures
of the CSBG Performance Management Framework are unique and
bold compared to other Federal programs.
3. CSBG creates impact in communities across the country by
leveraging additional private, local, State, and Federal
investments to fight poverty.
structure
Critics of Federal anti-poverty programs emphasize the need for
State and local leadership to address poverty, asserting that State and
local leaders are best equipped to tackle the challenges facing their
communities. CSBG embodies this very principle. CSBG is a block grant
administered and managed by States, which distribute funds to a
nationwide network of over 1,000 local CSBG Eligible Entities, also
known as Community Action Agencies or CAAs. The CSBG network serves
every corner of America, touching urban, rural, and suburban
communities. In some rural counties, the CAA is the only human services
organization working to promote economic security in that community.
Community Action Agencies utilize CSBG funds to address specific
needs, which may include services and programs that address one or more
of the core domains in which we work: employment, education and
cognitive development, income, infrastructure and asset building,
housing, health and social behavioral development, and civic engagement
and community involvement. The CSBG Act also requires that the work of
Community Action Agencies must be shaped by a community needs
assessment performed at least every 3 years. This process ensures that
CAA programs and services are evidence based and tailored to unique
community needs, rather than a one-size-fits-all solution. The needs
assessment prevents duplication and incorporates community feedback in
the strategic planning process. Furthermore, the CSBG Act requires at
least one-third of a Community Action Agency's board to be composed of
people with low-incomes or their representatives, ensuring that local
needs are accurately reflected in the priorities of the organization.
In addition to low-income representation, the CSBG Act also
requires Community Action Boards be comprised of local elected
officials or their representatives and community stakeholders which
include local businesses, other helping organizations, professional
groups, or community organizations. This unique tripartite structure
assures that the Community Action Agency not only properly identifies
the needs of a community, but also identifies the available resources
and opportunities that can be leveraged to maximize outcomes and
impact. The tripartite structure of Community Action boards calls on
all sectors of society to join in the fight against poverty.
accountability
In addition to a structure that empowers States and local
communities, CSBG is bolstered by a Performance Management Framework to
ensure accountability at all levels of the network. This federally
established Performance Management Framework includes State and Federal
accountability measures, organizational standards for Community Action
Agencies, and a Results Oriented Management and Accountability (ROMA)
system. Under the Performance Management Framework, the CSBG Network
reports outcomes through the CSBG Annual Report. Within this reporting
mechanism, National Performance Indicators are used across the network
to track and manage progress, ensuring CAAs have the data they need to
improve and innovate. The ROMA system allows local communities to
strengthen their impact and achieve robust results through continuous
learning, improvement, and innovation. Furthermore, CSBG State Offices
monitor local agency performance and adherence to organizational
standards, providing training and technical assistance to ensure high
quality delivery of programs and services.
impact
CSBG is a sound Federal investment that produces tangible results.
Federal CSBG dollars are used to support and strengthen the anti-
poverty infrastructure of our communities. In fiscal year 2017, for
every $1 of CSBG, CAAs leveraged $7.36 from non-Federal sources. This
leveraging of funds allowed CAAs to expand and maintain highly
successful programs. Including all Federal sources, non-Federal
sources, and volunteer hours valued at the Federal minimum wage, the
CSBG Network leveraged $20.22 of non-CSBG dollars per $1 of CSBG.
Without CSBG, many rural communities across America would not be able
to implement critical programs that address poverty at both the
community and family levels. Terminating CSBG would be detrimental to
the lives of the over 15.3 million people with low-incomes who the CSBG
network served in fiscal year 2017. Here is just a snapshot of the
impact of CSBG:
--173,775 unemployed, low-income people obtained a job as a result of
Community Action.
--52,220 low-income people with jobs obtained an increase in income
and/or benefits.
--38,947 low-income people achieved ``living wage'' employment and/or
benefits.
--425,445 low-income participants obtained healthcare services for
themselves or a family member.
--360,909 low-income families in CAA tax preparation programs
qualified for a Federal or State tax credit. (The expected
total amount of tax credits was $459,277,981).
--134,109 low-income people completed Adult Basic Education (ABE) or
General Educational Development (GED) coursework and received a
certificate or diploma.
Looking beyond the data, we can see that the CSBG Network is
delivering innovative, comprehensive, and effective programs across the
country that put individuals and families on a path out of poverty:
--Economic Self-Sufficiency in Pennsylvania: Bucks County Opportunity
Council (BCOC) is a Community Action Agency that has been
running its Economic Self Sufficiency program since 1997. Using
a comprehensive approach, the program addresses the root causes
that keep people with low incomes in poverty. BCOC helps
participants acquire education, skills, and employment to
permanently transition out of poverty. The average annual
family income for participants when starting the program was
$8,952. By the end of the program, the average family income
was $48,280. All Economic Self-Sufficiency graduates have
achieved employment that pays a family-sustaining wage, access
to safe reliable transportation, affordable housing, a balanced
household budget, and a health plan for the entire family. Most
notably, graduates of the program no longer receive Federal or
State subsidies such as cash assistance, food stamps, and
subsidized housing.
--Preventing Homelessness and Creating Affordable Housing in Oregon:
Oregon is working through its network of 17 Community Action
Agencies to make a stable home a reality for more parents,
grandparents, children, and veterans. CAA's are critical
implementers of the State's Emergency Housing Assistance (EHA)
and the State Homeless Assistance Program (SHAP) at the local
level. Oregon CAA's are trusted community partners that not
only connect members of the community to affordable housing,
but also preserve and create units of affordable housing in the
community. Stable housing is critical to keeping individuals
employed, in school, and on a path to economic security.
--Collective Impact in Florida: Pinellas Opportunity Council,
Incorporated is the Community Action Agency serving St.
Petersburg, Florida. Pinellas is a founding member of the 2020
Plan Task Force, which is a Collective Impact group started in
2015 whose goal is to reduce poverty in St. Petersburg by 30
percent by the year 2020. The 2020 Plan formula for
accelerating poverty reduction is threefold: increasing
incomes, targeting parents, and strengthening families. Because
poverty is defined by income, 2020's major focus is to increase
incomes through full-time, part-time, and self-employment. The
2020 initiative targets employment primarily to parents-in-
poverty because for every parent who exits poverty, an average
1.4 children do as well. The goal is for 70 percent of parents
served (2,450) to remain on track by the 2020 Census. In
addition to job training, placement, and retention support,
2020 also uses wrap-around family services to help parents
become active in their children's success.
In closing, we ask the committee to fund CSBG at no less than $775
million for fiscal year 2020, the funding level necessary to grow and
sustain this nationwide network with an over 50-year record of success.
The structure of CSBG empowers States and local communities to take the
lead on reducing poverty, while prioritizing locally determined
solutions. The CSBG network is subject to the extensive accountability
mechanisms of the CSBG Performance Management Framework, ensuring
effective and responsible stewardship of funds at the Federal, State,
and local level. CSBG is producing concrete results, serving millions
of vulnerable Americans each year and implementing strategies that that
move communities, individuals, and families toward economic security
and independence. NASCSP looks forward to working with Committee
members in the future to ensure that CSBG continues to help families
achieve outcomes that strengthen our communities and make a difference
in the lives of our most vulnerable neighbors. Thank you.
Respectfully.
[This statement was submitted by Jenae Bjelland, Executive
Director, National Association for State Community Services Programs.]
______
Prepared Statement of the National Association of Accountable Care
Organizations
Thank you Chairman Blunt, Ranking Member Murray, and members of the
Subcommittee for the opportunity to provide written testimony on behalf
of the National Association of Accountable Care Organizations (NAACOS),
the largest association of ACOs. Representing more than 5 million
beneficiary lives through 330 Medicare Shared Savings Program (MSSP),
Next Generation Model, and commercial ACOs, NAACOS requests that the
Subcommittee include report language in the fiscal year 2020 LHHS-ED
funding bill that would:
--Encourage the Centers for Medicare and Medicaid Services (CMS) to
ensure the process for the development of new healthcare
delivery and payment models, and modifications to existing
models, by the Centers for Medicare and Medicaid Innovation
(Innovation Center) is transparent and open for stakeholder
comment prior to publication of such models.
Congress established the Innovation Center to test different
delivery and payment models to improve quality and reduce costs in
Medicare and Medicaid. Today there is no standard process, however, for
public input on Innovation Center model development, which can be
especially concerning in the case of mandatory models. The Innovation
Center often communicates changes through contract amendments,
sometimes in the middle of a performance year.
Last month, NAACOS joined 8 healthcare organizations sending a
letter to CMS officials highlighting that the Innovation Center's work
needs a public process to allow stakeholder comment on all model design
elements prior to finalizing the model.\1\ Model changes also need to
be made and communicated clearly and publicly.
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\1\ https://www.naacos.com/assets/docs/pdf/2019/CMMI-
Letter3.26.19.pdf.
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Earlier this year, House Ways and Means Committee leaders Richard
Neal (D-MA) and Kevin Brady (R-TX) also called for greater transparency
in the Innovation Center's work, saying its model-development process
has ``historically been opaque to Congress and to stakeholders.'' \2\
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\2\ https://waysandmeans.house.gov/sites/
democrats.waysandmeans.house.gov/files/documents/Neal-
Brady%20letter%20to%20CMS%20re%20CMMI%202019-01-09.pdf.
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There is a wealth of expertise from those on the front lines of
healthcare delivery and payment transformation-knowledge that should be
solicited throughout a more public process of developing and updating
models. NAACOS appreciates this opportunity to provide the Subcommittee
with testimony on ways to improve transparency in the development of
value-based payment models. We look forward to working with you.
[This statement was submitted by Clif Gaus, President and Chief
Executive
Officer, National Association of Accountable Care Organizations.]
______
Prepared Statement of the National Association of Councils on
Developmental Disabilities
Chairman Blunt, Ranking Member Murray and members of the committee,
the National Association of Councils on Developmental Disabilities
(NACDD), a national membership organization for the State Councils on
Developmental Disabilities (DD Councils), appreciates the opportunity
to present this testimony. NACDD respectfully requests that Congress
appropriate $80 million for the DD Councils within the Administration
for Community Living (ACL) in the Labor-HHS-Education appropriations
bill for fiscal year 2020 and clarify in report language that not less
than $700,000 of that amount be provided for technical assistance and
training for the DD Councils.
Authorized by the bipartisan Developmental Disabilities Assistance
and Bill of Rights Act (DD Act), DD Councils work collaboratively with
the University Centers for Excellence in Developmental Disabilities
(UCEDDs) and Protection and Advocacy program for Developmental
Disabilities (P&As), to ``assure that individuals with developmental
disabilities and their families participate in the design of and have
access to needed community services, individualized supports, and other
forms of assistance that promote self-determination, independence,
productivity, and integration and inclusion in all facets of community
life, through culturally competent programs.'' \1\ The DD Act design
threads these three distinctly different programs together to ensure a
well-trained cadre of experts provide services to individuals with DD
and their families, protect the rights of individuals with DD, and
ensure that people with DD are fully included in the work to improve
services and systems to make them fully inclusive. Working within this
Federal framework, the role of the DD Councils is to promote person-
centered and family-centered system improvements with and for people
with developmental disabilities.
---------------------------------------------------------------------------
\1\ 42 U.S.C. 15001(b).
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Since 1970, Congress has recognized that DD Councils are in a
strategic position in each State and territory to invest in dynamic and
innovative programs that improve services and systems that help people
with developmental disabilities live in the community. Appointed by
Governors, and consisting of at least 60 percent people with DD and
their families, DD Councils assess problems or gaps in the system and
design solutions. Innovative solutions from the DD Councils often bring
about public-private partnerships that make real changes to systems
such as transportation, education, healthcare, housing and more.
This fiscal year 2020 funding request reflects the need for DD
Councils to direct resources through partnerships with local non-
profits, businesses and State and local governments, to overcome
obstacles to community living for people with DD. Community living
provides supports and services that empower children and adults with DD
to live their lives to the fullest. People with DD are living longer
and contributing to the social and economic growth of our country at
historic levels. States and territories rely on DD Councils to turn
fragmented approaches into innovative and cost-effective strategies to
increase the percentage of individuals with DD who become independent,
self-sufficient and integrated into the community. DD Council work
helps people with DD realize competitive and integrated employment,
access to qualified direct support workers, successfully transition to
independent living, access affordable housing, build leadership and
advocacy skills, and more. DD Council members also provide a critical
and unique role in educating State and local policymakers by directly
participating in the design of State and local government-funded
supports and services affecting their lives.
DD Councils promote community living in the States through narrowly
tailored, State specific initiatives. For example, even though persons
with developmental disabilities want to go to work and continue to be
contributing members to the workforce, national statistics indicate
that persons with developmental disabilities experience significantly
higher unemployment rates than their peers without disabilities. The
Missouri DD Council invests funds towards statewide efforts that
contribute to expanding opportunities for persons with developmental
disabilities to get and keep competitive jobs in integrated work
settings. The DD Council supported a project called Show-Me-Careers,
which scaled up evidence-based practices in eight pilot communities.
The project adopted a variety of approaches, including skill-building
of youth, career planning, and development of partnerships with the
local business community. Furthermore, recognizing lack of
transportation was a significant obstacle to employment, the DD Council
partnered with three Regional Planning Commissions and leveraged
funding with the Missouri Department of Transportation (MODOT) to
launch MO-RIDES, a referral service that connects riders to
transportation providers. MO-RIDES works with existing transportation
providers to find affordable, accessible and flexible transportation
for people with DD who need a ride to work, appointments or shopping,
thus improving their quality of life, by giving them greater access to
their community.
Another example of local solutions stemming from DD Council efforts
comes from Washington. The popular understanding of Autism spectrum
disorder focuses primarily on children and the importance of early
detection and intervention. However, Autism is a lifelong condition and
supports and treatments change as people grow older. The Washington
State DD Council is leading a 5-year Community of Practice to explore
different ways of supporting families with individuals with Autism
across his or her lifespan. Some of their work includes developing
strategies to address the needs of aging caregivers, establishing an
adult sibling support network, educating parents with intellectual and
developmental disabilities about parenting support services, and more.
The Georgia DD Council is another great example of Councils
applying State-based solutions to obstacles to community living.
Individuals with disabilities should have the opportunity to live full,
self-determined lives in the community. That is why the Georgia Council
on DD is the lead supporter of the UNLOCK! Coalition. UNLOCK! works to
rebalance the State system of long-term services and supports, so that
fewer dollars are spent on institutional care and more dollars are
invested into home and community-based supports. Because of UNLOCK!,
self-advocates, their families, providers, and other allies
successfully advocated to bring additional resources for long term
supports and services for people with disabilities to their State.
The 56 DD Councils require continuous support in order meet the
requirements of the DD Act. The DD Act provides funding for technical
assistance to DD Councils on how to implement the DD Act.\2\ Previously
funded through Projects of National Significance within the
Administration for Community Living, starting in fiscal year 2018,
Congress authorized the same technical assistance within the
appropriation for DD Councils. Unlike previous years, the fiscal year
2018 and fiscal year 2019 legislation did not contain report language
to protect technical assistance funding at levels that reflect the need
for these services. Unfortunately, for both fiscal year 2018 and 2019,
the Secretary of Health and Human Services reduced funding both through
a departmental transfer as well as for other administrative needs in
the department. For that reason, NACDD respectfully requests that the
committee include report language reflecting minimum levels of funding
of not less than $700,000 for technical assistance and training.
---------------------------------------------------------------------------
\2\ The Information and Technical Assistance for Councils on
Developmental Disabilities is a federally funded technical assistance
project authorized by Section 129(b) of PL 106-402.
---------------------------------------------------------------------------
Thank you for consideration of this request.
______
Prepared Statement of the National Association of County and
City Health Officials
The National Association of County and City Health Officials
(NACCHO) is the voice of the nearly 3,000 local health departments--
including city, county, metropolitan, district, and tribal agencies--
across the country. As community chief health strategists, local health
departments collaborate with community and private-sector partners to
ensure the safety of the water we drink, the food we eat, and the air
we breathe. They are a critical part of every community's first
response to a range of public health events, including disease
outbreaks like measles or the opioid epidemic or disasters like
hurricanes or acts of terrorism.
However, in recent years, local public health budgets have
stagnated or been cut, and recent public health emergencies-like the
measles outbreaks, hurricanes, and wildfires- highlight the need to
better fund our nation's broader public health infrastructure,
including workforce.
Federal funding is critical to this effort, particularly
appropriations for the Centers for Disease Control and Prevention
(CDC). Through CDC, the Federal Government provides critical funding
and technical assistance for local, State, and national programs to
strengthen public health capacity, share timely and critical
information, and improve health to save lives. Unfortunately, in recent
years the CDC's funding has remained static and has not kept pace with
inflation. That is why NACCHO is part of a coalition of more than 80
organizations requesting at least a 22 percent increase in CDC funding
by 2022. For fiscal year 2020, NACCHO urges the Senate to provide $8.2
billion for CDC, as the House Appropriations Committee did in its bill.
With an increased Federal investment in CDC funding, the agency will be
better able to implement effective programs to address local, State,
and Federal public health priorities. There are also key programs in
other Health and Human Services agencies, including in the office of
the Assistant Secretary for Preparedness and Response, that are vital
to promoting local public health. NACCHO highlights the following key
line items that are particularly important to local health departments
this year.
public health emergency preparedness cooperative agreements
NACCHO appreciates the increased funding for emergency preparedness
provided in fiscal year 2019 and urges the Subcommittee to provide $824
million for the Public Health Emergency Preparedness (PHEP) Cooperative
Agreements in fiscal year 2020. Without the support that PHEP provides,
local health departments--55 percent of whom rely solely on Federal
funding for emergency preparedness--would be without the critical
resources necessary to effectively prepare for and respond to public
health emergencies such as terrorist threats, infectious disease
outbreaks, natural disasters, and other emergencies. In 2018, Congress
spent nearly $100 billion to provide relief from hurricanes,
devastating wildfires, and other extreme weather events which took 247
lives. (see Washington Post, ``Wildfires, hurricanes and other extreme
weather cost the Nation 247 lives, nearly $100 billion in damage during
2018.'' February 6, 2019.) Without the support of PHEP, the cost could
have been much higher. A comprehensive, cost saving and proactive
public health approach to disaster preparedness helps communities
effectively mitigate the damage and costs of disasters and help recover
in the aftermath.
hospital preparedness program
NACCHO recommends $474 million in fiscal year 2020 for the Hospital
Preparedness Program (HPP). HPP funding helps enhance coordination
between local public health and the healthcare system to strengthen the
ability of hospitals, medical first responders, and medical provider
networks to prepare for and respond in the case of an emergency. As the
only source of Federal funding that supports regional healthcare system
preparedness, HPP promotes a sustained focus to improve patient
outcomes, minimize the need for supplemental State and Federal
resources during emergencies, and enable rapid recovery. HPP supports
over 470 regional healthcare coalitions across the Nation.
medical reserve corps
In fiscal year 2020, NACCHO requests $11 million for the Medical
Reserve Corps (MRC), a program that enables medical, public health, and
other volunteers to address local health and preparedness needs. The
program includes nearly 200,000 volunteers enrolled in almost 1,000
units across the Nation, with more than two-thirds of MRC units
operated by local health departments. MRC volunteers are an important
community asset, filling in gaps and providing key public health
services such as immunizations, health education and chronic disease
screenings, in addition to quickly mobilizing before, during and after
emergency situations. In 2017, MRC provided a $4 million economic
benefit during the hurricane response.
immunization program
NACCHO requests $711 million for the Immunization Program in fiscal
year 2020. The Immunization Program offers local health departments the
ability to purchase cost effective and lifesaving vaccinations, conduct
widespread outreach initiatives, provide important data collection and
surveillance to avert outbreaks, target limited resources, and provide
immunization services to at-risk populations. In the midst of the
largest measles outbreak in two decades, a strong, coordinated
immunization infrastructure is critical to prevent debilitating and
life-threatening diseases in both children and adults.
opioid abuse and overdose prevention
More than 47,000 Americans lost their lives due to an opioid
overdose in 2017, and the epidemic costs the United States nearly $80
billion per year. NACCHO thanks the committee for increasing opioid
funding for CDC by $350 million in fiscal year 2018 and sustaining this
level of funding. NACCHO urges the committee to build upon that
momentum and provide $650 million in funding for CDC in fiscal year
2020 to bolster surveillance and allow communities to keep building on
evidence-based and experience-tested methods of prevention.
In fiscal year 2019, Congress highlighted the need for opioid
funding to reach local communities, with specific direction to CDC to
allow local health departments to be eligible to apply for these funds.
NACCHO urges the Committee to include this language again in fiscal
year 2020 to ensure that these funds reach local communities.
In conclusion, robust Federal investment can help us turn the tide
and ensure all of our communities have what they need to be safe and
healthy. Thank you for your attention to these recommendations to
address the Nation's urgent public health challenges.
[This statement was submitted by Lori Tremmel Freeman, MBA, Chief
Executive Officer, National Association of County and City Health
Officials.]
______
Prepared Statement of the National Association of Drug Court
Professionals
Chairman Blunt, Ranking Member Murray and distinguished members of
the subcommittee, I am honored to have the opportunity to submit my
testimony on behalf of this Nation's more than 3,000 drug treatment
courts and the 150,000 people they will connect to life-saving
addiction and mental health treatment this year. Given the
unprecedented success of drug treatment courts and the growing need in
communities around the country for solutions to the addiction epidemic,
I am requesting the Congress maintain the enacted fiscal year 2019
number of $70 million for the Drug Treatment Court Program at the
Department of Health and Human Services, Substance Abuse and Mental
Health Services Administration (SAMHSA).
I serve as the associate circuit judge in Stone County, Missouri,
where, for much of my 17-year tenure, I have presided over our county's
drug treatment courts. I have never come across a more effective
approach to promoting public health while protecting public safety.
Strong evidence shows it reduces not only crime but also the heavy
taxpayer burden wrought by an overcrowded justice system. In fact, I've
dedicated much of my professional career to expanding the model as
chair of the Missouri Supreme Court Committee for Treatment Courts,
president of the Missouri Association of Treatment Court Professionals
and a faculty member for the National Drug Court Institute. But, most
importantly, at home in Stone County, I preside over our adult drug
court, DWI court and veterans treatment court.
Stone County is a rural, relatively quiet part of Southwest
Missouri, but we are not immune from the chaos and suffering caused by
addiction and related crime. Over the course of my career, I've seen
thousands of individuals cycle in and out of our justice system,
committing crimes in service to their addiction or mental health
disorder. Our drug treatment courts unite public safety and public
health to put a stop to that cycle. We hold offenders accountable for
their actions and connect them with evidence-based treatment to address
the underlying cause of the crime so it doesn't happen again.
I am proud to report that funding from the Substance Abuse and
Mental Health Services Administration allows our drug treatment court
programs to expand capacity, offering more evidence-based treatment for
more people in the justice system in need. Our SAMHSA dollars allow us
to partner with Drury University in Springfield, Missouri for ongoing,
independent evaluations of our program, giving us the statistics to
show our Federal, State and local funding is a positive investment in
the future of our community. This work helps us end the generational
cycle of addiction we see all too often in Stone County.
Several years ago, I met Kelly, a young mother raising her son in
the midst of a severe addiction to methamphetamine. After multiple
arrests and a stint in prison, where she was not offered the treatment
she desperately needed, Kelly found herself in front of me in the Stone
County Adult Drug Court.
In drug treatment court, each participant is assessed and given a
treatment plan designed for their unique success--often including
medication-assisted treatment as one of the many tools for helping
participants find a path to recovery. Kelly received treatment specific
to her unique needs.
Treatment, of course, is not enough. Kelly was held accountable by
a multi-disciplinary team of law enforcement, probation, defense
counsel, prosecution and case management. She frequently appeared
before me so I could review her progress, reward her for doing well and
encourage her when she faltered. Together, the team provided the
ongoing supervision and support expected of our justice system by the
community.
Today, Kelly is a productive member of our community. She credits
drug treatment court with saving her life. As is often the case,
Kelly's addiction negatively impacted her son, Shane. Shane also
suffered a severe addiction of to methamphetamine and following an
arrest, he too was placed in my drug treatment court. With the help of
his mom, now sober, and the accountability of our court, Shane is now
living a life in recovery and helping to raise his child--a child that
will grow up with a father and grandmother free from addiction and
crime. The generational cycle stopped with Shane.
Kelly and Shane are just two examples of the 150,000 people
nationally who get access to treatment through drug treatment courts
each year. What started as an experiment three decades ago is today the
most successful strategy for addressing addiction and mental health in
the justice system. In fact, no other intervention in our Nation's
history has anywhere near comparable evidence of both reducing
recidivism and saving taxpayer dollars.
The Government Accountability Office finds drug treatment courts
reduce crime by up to 58 percent. Further, in what is widely regarded
as the most comprehensive study on drug treatment courts to date, the
Department of Justice, National Institute of Justice Multi-Site Adult
Drug Court Evaluation (MADCE) confirmed drug treatment courts
significantly reduce both drug use and crime and found cost savings
averaging $6,000 for every individual served. The MADCE further found
drug treatment courts improve education, employment, housing and
financial stability for nearly all participants. They are proven to
promote family reunification, reduce foster care placements and
increase the rate of addicted mothers delivering babies who are fully
drug-free.
But the dollars and cents of drug treatment court is never a
substitute for the real successes of people who not only rise above
their burden on society but contribute positively to their community.
When a young man named Keaton came to my courtroom almost 10 years ago,
I could tell he was smart but headed down the wrong path. He had an
addiction to opioids and was committing crimes in our community to
support it. But after intense treatment and ongoing accountability,
Keaton came around. Soon, he was on the path to recovery and, for the
first time in a long time, he had his sights set on the future. Keaton
went to college, graduating with a degree in nursing. But with a new
lease on life, Keaton wanted more--he eventually went back to school
and today is a doctor of nurse anesthesia. When that smart young man
stood before me, I was focused on saving his life--little did I know
he'd be saving lives himself just a few years later.
Our program in Stone County benefits greatly from Federal funding
provided by the Department of Health and Human Services. I strongly
urge this committee to recommend level funding to the Drug Treatment
Court Program so people like Kelly, Shane, Keaton and the 1.5 million
others served by drug treatment courts in the last 30 years don't slip
through the cracks of our justice system.
[This statement was submitted by Judge Alan Blankenship, Circuit
Court of Stone County, Missouri on the Drug Treatment Court program at
the Substance Abuse and Mental Health Services Administration,
Department of Health and Human Services on behalf of the National
Association of Drug Court Professionals.]
Prepared Statement of the National Association of Nutrition and Aging
Services Programs
Chairman Blunt, Ranking Member Murray;
On behalf of the National Association of Nutrition and Aging
Services Programs (NANASP), an 1,100-member nonpartisan, nonprofit,
membership organization for national advocates for senior health and
well-being, we thank you for the opportunity to offer testimony in
support of the Older Americans Act Title III(C) senior nutrition
program within the Administration for Community Living (ACL) and for
the Senior Community Service Employment Program within the Department
of Labor. We support funding the Title III(C) nutrition program at $1
billion for fiscal year 2020 and the Senior Community Service
Employment Program at $463.8 million for fiscal year 2020, both levels
approved by the House Appropriations Committee.
older americans act title iii(c) senior nutrition programs
Older Americans Act (OAA) congregate and home-delivered meals
programs are provided in every State and congressional district in this
Nation. Approximately 2.4 million seniors in 2017 received these
services.
First, thank you for your bipartisan leadership last fall in the
passage of the fiscal year 2019 appropriation bill, and for the $10
million funding increase for the III(C) nutrition programs, which built
on the much-needed increase provided in fiscal year 2018. We also thank
you for rejecting the President's call for the elimination of the
Social Services Block Grant (SSBG), which also funds home-delivered
meals, and funding it at $1.7 billion.
Unfortunately, these funding increases, though much needed, still
do not keep pace with the rising cost of food, inflation, and the
growing numbers of older adults. In fact, year over year, the number of
older adults receiving meals is shrinking even as the need is growing:
the OAA network overall is serving 19 million fewer meals to seniors in
need than it was in 2005. We know that 58 percent of participants have
indicated that one congregate meal provides one-half or more of their
total food for the day, and that a 2015 Government Accountability
Office report found that 83 percent of food-insecure seniors and 83
percent of physically-impaired seniors did not receive meals through
the OAA, but likely needed them. Additional funding for congregate and
home-delivered meals in fiscal year 2020 is critical to help to
counteract inflation and provide millions of additional meals when
combined with State and local funding. Our fiscal year 2020 request
would increase funding for these programs by around $93 million.
Investing additional money in the OAA nutrition programs is
fiscally responsible. Access to OAA meals is essential to keeping these
older adults out of costly nursing facilities and hospitals. For
example, Meals on Wheels clients report fewer falls, which currently
cost our Nation $50 billion annually in medical expenses, $28.9 billion
billed directly to Medicare. Data from ACL's National Survey of OAA
Participants indicates that 61 percent of congregate and 92 percent of
home-delivered meal recipients say that the meals enable them to
continue living in their homes. Further, on average, a senior can be
fed for a year for about $1,300, which is approximately the same as the
cost of one day's stay in a hospital or less than the cost of 10 days
in a nursing home. The cost savings to Medicare and Medicaid that this
creates cannot be over-emphasized.
Another benefit provided by the OAA nutrition programs, as called
for in the OAA, is the socialization opportunity that the program
provides its recipients. Over the course of the last two and a half
years, NANASP with a grant from the Retirement Research Foundation has
studied the value of socialization. This has included interviews with
more than 250 individual older adults at their lunch tables at
congregate meal sites, asking them their main reason for attending the
program. Easily more than 90 percent answer socialization, which proves
the program is doing what was intended. At a time when we have growing
concerns about isolation and loneliness among older adults, the OAA
congregate nutrition program stands distinctly as a program that has
been proactively addressing this issue. Additional support will offer
additional opportunities for more older adults to benefit.
Further, the OAA nutrition programs provide jobs to thousands
across the country. The programs itself are also flexible, allowing
local communities to tailor their local programs to meet the needs of
the seniors they serve. These programs are the epitome of a public-
private partnership; local programs work in tandem with State and local
governments as well as private philanthropy to provide their services,
and the OAA nutrition programs participants contribute to the cost of
meals on a voluntary basis. In short, the OAA nutrition programs are
the model of successful government, and they have worked for over 45
years.
senior community service employment program
The Senior Community Service Employment Program (SCSEP), also known
as Community Service Employment for Older Americans, is authorized by
the Older Americans Act but administered and funded by the Department
of Labor. It is the only Federal program that directly helps older
workers. We thank you for rejecting the President's call for the
elimination of SCSEP in fiscal year 2019.
SCSEP currently provides jobs for about 67,000 low-income older
adults in every State and territory, and in nearly every county in
every State. Many of these jobs are in the service of other older
adults--SCSEP participants may work as senior center staff members,
transportation providers, or home-delivered meals cooks and drivers,
which benefits OAA nutrition programs tremendously.
SCSEP participants provided more than 34.8 million paid staff hours
to over 20,000 local public and nonprofit agencies, such as libraries,
schools, and senior centers in Program Year (PY) 2015. Further, the
value of the community service provided by SCSEP participants (using
Independent Sector's estimated value of a volunteer hour) exceeded $840
million in PY 2017, over twice the total SCSEP PY 2017 appropriations
of $400 million.
SCSEP received $400 million in fiscal year 2019, a repudiation of
the elimination of the program as supported by the President and level-
funding as compared to the previous year. However, this is not enough
to meet the growing need for SCSEP--both in participants and in wages.
Our request would restore SCSEP's funding levels to the authorized
levels for fiscal year 2019 under the Older Americans Act.
SCSEP is the only Federal program targeted to serve specifically
low-income older adults seeking employment and training assistance;
moreover, the Government Accountability Office has previously
identified SCSEP as one of only three Federal workforce programs with
no overlap or duplication. The average age of a program participant is
62; according to the Department of Labor, 65 percent of all SCSEP
participants in PY 2015 were women, 49 percent were minorities, and 88
percent were at or below the Federal poverty level.
By providing subsidized employment opportunities for this highly
vulnerable and underemployed/unemployed segment of the population,
SCSEP helps participants build their resumes and receive the training
they need to transition into unsubsidized employment. These subsidized
employment opportunities also provide staff members for other community
programs that may lack funding for regular hires--not only senior
centers, but also public libraries, schools, hospitals, and other
community agencies.
Many States and localities are raising the minimum wage, and this
dilutes SCSEP funding, which must increase to match these increases.
This decreases the number of participants SCSEP can handle, yet the
older population is growing.
As a job-creator and an unduplicated, successful program, SCSEP
should receive consideration for increased funding. We need to preserve
the only Federal program serving an especially vulnerable population--
low-income older adults--and there is no real alternative to SCSEP.
Thank you for your past and future support of these programs.
[This statement was submitted by Mary Beals-Luedtka, Chair, and
Robert Blancato, Executive Director, National Association of Nutrition
and Aging Services Programs.]
______
Prepared Statement of the National Association of RSVP Directors
The National Association of RSVP Directors (NARSVPD) appreciates
the opportunity to submit testimony recommending an fiscal year 2020
funding level of $63 million for the RSVP program, administered by the
Corporation for National and Community Service (CNCS). This additional
$13 million will help bring successful programs to scale, enable more
seniors live independently, support veterans and military families, and
combat opioid abuse, as well as meet other local needs.
Older Americans are facing higher costs for assisted living and
healthcare and are facing greater social isolation. In many parts of
the country--especially counties in the rural Midwest--older Americans
are ``aging in place'' because disproportionate shares of young people
have moved elsewhere. This leaves seniors dependent on a frayed social
safety net and dependent on volunteers for needed services.
Further, according to the Population Reference Bureau, `` The aging
of the baby boom generation could fuel a 75 percent increase in the
number of Americans ages 65 and older requiring nursing home care, to
about 2.3 million in 2030 from 1.3 million in 2010. Demand for elder
care will also be fueled by a steep rise in the number of Americans
living with Alzheimer's disease, which could nearly triple by 2050 to
14 million, from 5 million in 2013.'' The need for RSVP has never been
greater.
RSVP deploys more than 200,000 volunteers in more than 600 programs
to support the efforts of thousands of community organizations across
the Nation. It provides opportunities for people 55 and over to make a
difference in their communities through volunteer service. It offers
maximum flexibility and choice to its volunteers by matching the
personal interests and skills of volunteers with opportunities to help
solve community problems. It offers pre-service orientation,
supplemental insurance while volunteers are serving, and training from
the agency or organization in which volunteers are placed. RSVP
volunteers get no stipend but are eligible for reimbursement for meals
and mileage, as long as program budgets allow for it.
RSVP programs identify community needs and continually recruit,
train, place, coach and mentor volunteers while they report to CNCS on
how programs are meeting their performance goals and other matters.
RSVP is not means tested and recruits volunteers without regard to
income. Most serve between 10 and 40 hours a week, but there is no set
schedule. RSVP is flexible allowing volunteers improve the lives of
their neighbors and friends every day.
For example, some 667 RSVP volunteers in the Scott and Cape
Girardeau Counties, Missouri RSVP program served 99 not-for-profit
agencies and generated 76,557 hours of community service worth an
estimated $1.9 million. RSVP volunteers drive cancer patients to and
from their treatment, tutor and mentor youth and adults, serve in
juvenile court to meet the needs of abused and neglected children,
visit elderly veterans, serve in State parks, and deliver meals to
frail and homebound seniors, among many other volunteer activities.
RSVP is cost-effective and an excellent investment. The average
Federal RSVP grant is about $78,000. This is less than the $89,300,
which was national annual median cost of a semi-private room in a
nursing home in 2018. In many States, it costs more to put one senior
in a nursing home for a year than it does to support an entire RSVP
program. Using Independent Sector's estimate of the value of an hour of
volunteer service, RSVP volunteers provide more than $1 billion worth
of service to the Nation each year.
RSVP grantees must provide a match. The required non-Federal share
is a minimum 10 percent of the total grant in year one, 20 percent in
year two, and 30 percent in year three and all subsequent years. CNCS
estimated that States and local communities would have contributed $39
million in non-Federal support in fiscal year 2017.
Volunteers improve the quality of life for volunteers and those
they help. According to an article published on April 22, 2018 in the
Wall Street Journal, a study of 2,705 volunteers age 18 and older from
found that 75 percent of those who volunteered in the past 12 months
said volunteering made them feel physically healthier. A much larger
study-one involving more than 64,000 subjects age 60-suggests that
volunteering slows the cognitive decline of aging. The author of that
study, Dr. Sumedha Gupta reported, ``The effect is significant. It's
consistent,'' Dr. Gupta said. Further, ``we find that as people
volunteer, their cognitive health scores improve. If they don't
volunteer, their cognitive scores decline faster.'' The reasons behind
volunteering's boost to cognitive health, Dr. Gupta said, have to do
with the unique characteristics of such activity. Unlike paid work,
there is a ``different subjective well-being'' or ``warm glow'' that a
volunteer experiences from helping people. Volunteering is also unique
``because it supplies mental, physical and social stimulation in one
package,'' Dr. Gupta said. ``You have to move around, you interact with
people, you think about activities.''
Further, Baby boomers are particularly susceptible to loneliness,
which undermines health and is linked to early mortality, and has been
found to shorten lives as much as smoking or drinking. Being lonely may
be worse than being obese. A study of recently widowed older adults
found that ``higher intensity volunteering may be a particularly
important pathway for alleviating loneliness among older adults.''
RSVP volunteers support students. In Davidson and Williamson
Counties, Tennessee, RSVP's signature program is Friends Learning in
Pairs (FLIP), an intergenerational volunteer tutoring program that
matches adults 55+ with students in Davidson and Williamson County
elementary schools for one-on-one academic support in reading or math.
Through weekly one-on-one tutoring sessions throughout the school year,
RSVP volunteers provide the individual support, encouragement and
friendship struggling students need in order to succeed. In the school
year 2017/18, 108 FLIP tutors served 422 students in 30 partner schools
with the following results: 86 percent of students served either
achieved grade level proficiency or increased their academic grade
level by at least 1/2 grade, 96 percent of teachers referring a child
to FLIP indicated the program helped them achieve their goals for
student improvement, and 93 percent of volunteer tutors indicated that
they were able to make a positive difference in a child's life as
result of volunteering with the FLIP program.
RSVP helps other seniors to live independently. RSVP volunteers
help keep seniors in their homes. In rural Pike County, Alabama 25 RSVP
Volunteers transport an average of 15 other seniors per week to medical
appointments, drug stores, and to buy groceries or other necessities.
They provide over 2500 trips annually enabling 86 seniors to get
medical care and continue to live independently in their own homes.
With RSVP volunteer assistance, 86 seniors remain in their homes yearly
and save over $5,650,200 in nursing home costs to Alabama. Another 25
RSVP Volunteers call 85 frail homebound seniors, mostly living in a
rural area, on a daily basis providing outreach and interaction,
helping them remain mentally alert, feel safer, and enabling them to
remain in their homes and avoid early institutionalization. Fifteen
RSVP volunteers assist with local meal deliveries to frail and
homebound seniors. Last year, RSVP volunteers made more than 4800
deliveries, ensuring that seniors received a nutritious meal.
Volunteers also interacted with these seniors and were able to help
them remain in their homes and avoid premature institutionalization.
RSVP volunteers support veterans and military families. Pike County
RSVP has 20 RSVP volunteers who serve with its Veterans and Military
Families initiative in which Troy University provides a classroom with
60 available computers and RSVP volunteers assist with job search,
online applications and mock job interviews for veterans and military
families, and assisting veterans and military families in researching
and locating housing, schools, and support services. All told, last
year these RSVP volunteers helped more than 200 veterans and military.
The first RSVP Veterans Coffeehouse in Connecticut was established by
Thames Valley Council for Community Action's RSVP in Killingly in 2015.
More than 433 guests, including 157 veterans, attended the coffeehouse
during its first 6 months. The coffeehouse provides socialization for
isolated veterans. Through connections made at the coffeehouse, several
veterans have been able to gain access to additional services and
benefits. Two veterans were awarded full disability for Agent Orange
complications. A 92-year-old veteran received two new hearing aids at
no charge. Eight veterans began receiving housing, energy, medical and
food assistance through the Soldiers, Sailors & Marines Fund. Other
veterans are gaining access to healthcare through the Veterans
Administration as a result of the coffeehouse.
RSVP is a ``destination'' for retiring ``baby boomers.'' Some
10,000 ``baby boomers'' retire everyday and will do so everyday for the
next 20 years. RSVP is the only national program able to place large
numbers senior volunteers in high quality volunteer positions. CNCS
reported that RSVP has increased the number of baby boomers in the
program and provides those volunteers with high quality activities that
make use of their skills. Baby boomers enrolled in RSVP volunteer over
100 hours more than their counterparts who are not associated with
RSVP. Virtually all of RSVP baby boomers who recruit/coordinate other
volunteers are likely to continue in the program.
Take the case of Nancy who moved to Seattle in 2017 to be near one
of her children. Soon after arriving in the Seattle area, Nancy picked
up a free newspaper at the grocery store and read an article on
volunteering listing Solid Ground's RSVP program as a place to call for
senior volunteer opportunities. After consulting with RSVP, Nancy chose
the Chicken Soup Brigade (CSB) program at Lifelong, a community health
organization offering a wide variety of services for people living with
chronic illnesses. CSB has been serving clients across the greater
Seattle area with nutritious food and meals for over 30 years. Every
week, staff and over 200 volunteers prepare, package and hand deliver
more than 1,000 nutritionally specific meals. The food and meals are
processed from CSB's main distribution center in Georgetown, and then
delivered to satellite distribution locations around the area for final
delivery to clients. Nancy is the Satellite Site Coordinator at the
Bellevue distribution center. Every week, she organizes meals for
delivery and supports volunteer drivers as they prepare their
deliveries. Nancy has ``always been interested in getting food to
people who need it,'' and, she says, ``the need in Seattle is
enormous.''
RSVP is helping in the fight against opioid abuse. Fort Wayne RSVP
received a grant in 2017 to help combat opioid abuse that can be
replicated at scale. The grant covers four mostly rural counties in
Indiana: Adams, Wells, Huntington, and Whitley. The main goal is to
develop TRIAD partnerships of three constituencies--law enforcement,
older adults, and community groups in each county. The purpose of TRIAD
is to promote older adult safety and to reduce the fear of crime that
older adults often experience. The TRIAD will serve as a vehicle to
promote citizen involvement to address opioid abuse in these mostly
rural counties. RSVP volunteers are being recruited to serve in TRIAD
event planning, distribution of educational material with a focus on
opioid abuse, and assisting at Medication Collection events twice a
year and at ongoing year round collection sites. Local Sheriffs have
identified topics for community education including lack of knowledge
of opioids, the use of Narcan, safe storage of medication in homes, and
proper disposal of unused or unwanted opioid medications. Informational
programs have been held in each county and have addressed safe storage
of medication in the home, proper disposal of medication, and working
with local law enforcement if questions or problems arise.
RSVP is an important source of disaster prevention and relief. RSVP
volunteers have participated in recovery efforts in Alabama, Missouri,
Kentucky, South Carolina, Texas, and New York and have recently been
deployed in the aftermath of floods in the Midwest.
We believe that restoring funding for RSVP to $63 million will
result in significant benefits to both the volunteers and the
communities they serve.
[This statement was submitted by Betty M. Ruth, President, National
Association of RSVP Directors.]
______
Prepared Statement of the National Association of State
Head Injury Administrators
Dear Chairman Blunt and Ranking Member Murray:
On behalf of the National Association of State Head Injury
Administrators (NASHIA), thank you for the opportunity to submit
testimony regarding the fiscal year 2020 appropriations for programs
authorized by the Traumatic Brain Injury (TBI) Program Reauthorization
Act of 2018 administered by the U.S. Department of Health and Human
Services (HHS) and the National Institute on Disability, Independent
Living, and Rehabilitation Research (NIDILRR) authorized by the
Workforce Innovation and Opportunity Act (WIOA) of 2014, which
transferred NIDILRR from the Department of Education to HHS. NASHIA is
requesting;
--$19 million for HHS' Administration for Community Living's (ACL)
TBI State Partnership Grant Program
--$6 million for the ACL Protection & Advocacy Grant Program;
--An additional funding to expand the ACL's NIDILRR TBI Model Systems
from 16 to 18; and
--$5 million additional funding for the Centers for Disease Control
and Prevention's National Center for Injury Prevention and
Control for a national concussion surveillance system
authorized by the TBI program Reauthorization of 2018.
NASHIA also supports funding for CDC's and ACL's older adult falls
prevention program ($2.05 million and $5 million) and the injury
control research centers ($9 million).
NASHIA thanks the U.S. Congress for reauthorizing the TBI Act
programs last December and for the small increase received this current
fiscal year for the TBI State Partnership Grant and P&A Grant programs
($1 million combined). The HHS' ACL Federal TBI State Partnership Grant
Program is the only program that assists States in addressing the
complex needs of individuals with TBI.
Last spring, ACL awarded four-year grants to 24 States at either
$300,000 or $150,000 annually to improve and expand service delivery.
The AC TBI State Protection & Advocacy (PATBI) grant program awards
grants to each State and territory at a minimum of $50,000. The
requested amount will increase the amount awarded to State and PATBI
grantees, as well as to increase the number of State awards to reflect
the expanding number of Americans with a TBI needing public resources.
In 2013, 2.8 million Americans sought treatment for or died from a
TBI as the result of a car crash, fall, sporting or recreational
injury, an assault or other contributing factor. A TBI may cause
problems with cognition, emotions, language, physical mobility and
sensory affecting how a person is able to return to school, work, home
and community. It is a complex disability that challenges States'
ability to provide the right services at the right time.
Over the course of recovery, a combination of private and public
entities are involved, including emergency departments; medical and
rehabilitative facilities and programs, such as trauma designated
hospitals; post-acute rehabilitation programs; education, if school
aged; vocational rehabilitation, if returning to work; therapies to
maintain physical and cognitive functioning; and community services and
supports to enable the individual to return to the community to live as
independently as possible. Payers for these type of services include
private health insurance, Workers' Compensation; Medicaid; Medicare;
State revenue; private pay; and public assistance programs. Navigating
this path to recovery is overwhelming for individuals and their
families. To assist with the coordination of rehabilitative care,
services and supports, many States have developed service coordination
or case management systems supported by Medicaid, Sate funding or
dedicated funding from fines or fees, referred to as trust fund
programs. Not all States, however, have this resource and those States
that do, may not have adequate provider networks throughout the State.
We are pleased that ACL is beginning to develop a Federal
Interagency Coordinating Plan, as called for by the TBI Act. This is
being done in recognition of the need to align TBI resources with other
Federal aging and disability programs, such as the Lifespan Respite
Care, Aging and Disability Resource Centers, and Assistive Technology,
to help States maximize and to coordinate Federal resources. States
also benefit from research conducted by the TBI Model Systems funded by
NIDILRR, also housed in the ACL, to assist with ``best practices'' to
ensure good outcomes.
States primarily incur the burden of TBI with regard to individuals
who need on-going, crisis or short-term services and supports that are
not paid for through private healthcare insurance plans. About half of
the States have enacted legislation to establish a trust fund program
for such purposes; a few State legislatures appropriate general revenue
to fund services; about half of the States have implemented brain
injury Medicaid Home and Community-Based Services (HCBS) waiver
programs; and some State programs use a combination of these funding
sources to support the array of needs. These services include post-
acute rehabilitation; personal care; service coordination or case
management; assistance with activities of daily living; in-home
accommodations and modifications; transportation; and therapies,
including behavioral, cognitive, speech-language and physical
therapies. With limited State resources to address these needs, many
individuals, particularly those with behavioral issues, addiction
problems, and poor judgment, will find themselves homeless or in
correctional facilities.
Since 2009, all 50 States and the District of Columbia have enacted
``return to play'' laws to address concussion management in youth
athletes. States are now beginning to address ``return to learn''
issues to identify the academic needs of students after a concussion,
regardless of cause. The requested $5 million for the CDC's National
Center for Injury Prevention and Control to establish and oversee a
national concussion surveillance system will greatly assist States as
they target their resources to better meet and understand the needs of
individuals who sustain a concussion.
Past and current State grantees have identified and assisted high
risk populations, which includes youth and adults with TBI in juvenile
justice and criminal justice systems; older adults with fall-related
TBIs; returning servicemembers and veterans; and young children in pre-
school programs through screening, training, and linking individuals to
services. At the end of each grant funding cycle States have found it
difficult to continue these activities without financial support.
Increased and sustainable funding will help to continue this important
work.
In keeping with our mission, NASHIA, a nonprofit organization,
works on behalf oft States to promote partnerships and build systems to
meet the needs of individuals with TBI with the goal of all States
having resources to assist individuals with TBI to return to home,
community, work and school after sustaining a brain injury, as well as
assistance to family members who generally serve as primary caregivers.
In addition, through the ACL falls prevention program and the
National Center for Injury Control and Prevention, Federal funding is
needed to help States to address injury prevention, including high risk
populations such as older adult falls, and to better determine and
address through the ACL TBI State Partnership grants.
Again, thank you for this opportunity and your support to better
serve Americans, both civilians and military, with traumatic brain
injury. Should you wish additional information, please do not hesitate
to contact Rebeccah Wolfkiel, Executive Director, at
([email protected]). You may also contact Becky Corby, NASHIA
Government Relations, at ([email protected]) or Susan L.
Vaughn, Director of Public Policy, at ([email protected]). Thank
you for your continued support.
[This statement was submitted by Susan L. Vaughn, Director of
Public Policy,
National Association of State Head Injury Administrators.]
______
Prepared Statement of the National Association of State Long-Term Care
Ombudsman Programs
Chairman Blunt and Ranking Member Murray, I am pleased to present
this testimony on behalf of the nearly 71,000 residents in Washington
State's long-term care facilities and in collaboration with the
National Association of State Long-Term Care Ombudsman Programs
(NASOP). Thank you for your past support of State Long-Term Care
Ombudsman Programs (SLTCOPs) and the vulnerable citizens that it
serves. I submit this statement and the funding recommendations for the
fiscal year 2020 for SLTCOPs administered through the Administration
for Community Living, in the Department of Health and Human Services to
include:
--$20 million for assisted living ombudsman services under Title VII
of the Older Americans Act;
--$35 million for our current core funding under Title VII of the
OAA; and
--$5 million under the Elder Justice Act for training and services to
address increasing abuse, neglect, and exploitation, including
related to staff that are part of the opioid crisis.
Long-term care ombudsmen help older adults and people living with
disabilities have a good quality of life, receive quality care, and be
treated with dignity. LTC Ombudsmen are paid professionals who recruit,
train and oversee teams of local volunteers who want to give back to
their communities. The advocacy we provide is the first line of
protection for thousands of elders living in licensed long-term care
facilities. Last year, volunteers in Washington donated approximately
34,002 hours of their time and skill to resolve complaints made to the
program with a success rate of nearly 90 percent. We save the State
resources by resolving complaints at the lowest level keeping them out
of the expensive regulatory and legal systems. However, like our sister
program's across the Nation, we are not able to keep up with consumer
needs and growing costs which is of concern giving the aging of the
baby boomer generation in the U.S.
In Washington and other States, the number of Assisted Living
Facility residents has grown tremendously. By the end of 2019,
Washington will have 2,000 additional assisted living facility beds but
no expansion in ombudsman services. The growing number of long-term
care residents makes it financially and resources to provide the cost
saving advocacy services provided by LTC Ombudsman Programs.
To alleviate the effects of diminished budgets and expanding long-
term care populations, we respectfully request the following funding to
support all SLTCOPs.
First, we request $20,000,000 to support SLTCOP work with residents
of assisted living, board and care, and similar community-based long-
term care settings. While the mandate to serve residents in assisted
living facilities was added to our mission Act, there have been no
appropriations for this function. Assisted living and similar
businesses have boomed, but SLTCOP funding has not increased to meet
the demand and respond to the industry boom.
Washington State has demonstrated leadership by reducing costs in
their Medicaid system, while improving consumer choice in community
based long-term. Assisted living has proven to be a viable option for
those who qualify for more costly nursing home care, but wish to
exercise their choice to live in assisted living. Assisted living
residents have complex medical needs, very much like the nursing home
residents of 20 years ago. Growth in the number of assisted living
facilities, in conjunction with complex needs of consumers and
diminished funding, threatens our Nation's Long-Term Care Ombudsman
Programs. These challenges to State Programs hinder our ability to meet
program requirements to provide regular and timely access to all
residents wanting long-term care ombudsman services. Current funding
levels preclude SLTCOPs from quickly responding to complaints and
monitoring facilities. Without our eyes and ears in these buildings,
residents are at risk of abuse, neglect, and serious financial
exploitation, and any number of violations to their rights.
Our second request is for $35,000.000, which is needed to provide
core program funding for the program under Title VII of the Older
Americans Act. These funds must be allocated to all fifty States. In
addition to improving the quality of life and care for millions of
vulnerable long- term care residents, our work saves Medicare and
Medicaid funds by avoiding unnecessary costs associated with poor
quality care, unnecessary hospitalizations and expensive procedures and
treatments. Furthermore, nationally in 2016, nearly 7,331 volunteers
served in the SLTCOP. For every one staff ombudsman, six volunteer
ombudsmen serve residents. Ombudsman staff and volunteers investigated
199,493 complaints made by 129,559 individuals. Ombudsmen were able to
resolve or partially resolve 74 percent--or an ombudsman resolved three
out of every four complaints investigated.
In 2018, Washington State had 3,818 long-term care facilities with
approximately 71,000 residents. Our State program includes myself, and
two other full time staff, which has not changed much since 1989.
Thankfully, we have great partnerships with other not-for-profits to
operate local ombudsman programs, extending our reach into the most
isolated of nursing home residents in our rural communities. These
partners include seven Area Agency on Aging entities and three
Community Action Programs and in total, we employ 17.51 full-time
staff. Two national studies about the effectiveness about the LTC
Ombudsman Program (the Institute of Medicine, and the Bader Report)
have recommended that best practice be to employee one full-time paid
staff ombudsman for every 2,000 long-term care residents or licensed
beds. Washington State falls short of that goal at having only 49
percent of the needed paid staff.
Although we have a great team of paid and volunteer ombudsmen, our
program is still not able to cover every facility in our State. Nearly
half of the licensed facilities in our State never receive routine
visits by an ombudsman, which is the hallmark activity of the Program
and vital to building trusting and effective working relationships. We
are so busy responding to complaints and phone calls that we are not
able to conduct regular outreach, build presence in all facilities, and
make our services known to isolated residents and their family members.
We are overwhelmed with complaints about unwanted and unlawful
discharges, also known as, ``resident dumping'' by residents, their
loved ones and by hospitals, which involves expensive legal issues,
interactions with multiple health and long-term care community systems,
State entities and the courts.
Third, we request $5,000,000 to support the work of SLTCOPs under
the Elder Justice Act (EJC). This appropriation would allow States to
hire and train staff and recruit more volunteers to prevent abuse,
neglect, and exploitation of residents and investigate complaints.
However, the funds have been authorized since 2010, to date no EJC
funds have been appropriated for SLTCOPs. Currently, Federal Older
Americans Act funding comprises about a third of the total funding
required to maintain the Washington Long-Term Care Ombudsman Program,
at its current level, with the majority of funding coming from our
State General Funds. We understand that this subcommittee faces a
strained financial situation, but a continued commitment to SLTCOPs
protects the health and safety of millions of older adults living in
nursing homes and assisted living facilities. I believe their
protection should remain a high priority.
Demand for our services is growing. The number of complex and very
troubling cases that long-term care ombudsmen investigate has been
steadily increasing. In addition, there continues to be a disturbing
increase in the frequency and severity of citations for egregious
regulatory violations by long-term care providers that put residents in
immediate jeopardy of harm, which, unfortunately, is true for nursing
homes in my State. Ombudsmen are needed now more than ever in nursing
homes, assisted living, and similar care facilities where we are
required to serve.
The people who operate long-term care facilities have recognized
the value and benefit of having ombudsmen assist with staff training
and consultation. In order to improve advocacy and services available
to residents, our office and NASOP respectfully request the
aforementioned funding levels. We also appreciate that the testimony of
the Elder Justice Coalition also calls for these increases.
Thank you for your ongoing support.
[This statement was submitted by Patricia Hunter, Washington State
Long-Term Care Ombudsman Member, National Association of State Long-
Term Care
Ombudsman Programs.]
______
Prepared Statement of the National Coalition of STD Directors
Chairman Blunt, Ranking Member Murray, and Subcommittee Members:
I am providing this testimony on behalf of the National Coalition
of STD Directors (NCSD), a national membership organization
representing STD programs at health departments in all 50 States, seven
large cities, and eight U.S. territories. This testimony reflects the
voices and perspectives of STD programs across the U.S. who are
overwhelmed, underfunded and fighting a losing battle against sexually
transmitted diseases (STDs).
I have a very simple message for you and that is that the STD
prevention program at CDC has been level funded for the last 15 years,
and this must change. The result of years of flat funding is historic,
out of control epidemics for all reported STDs. If this flat funding
continues, these infectious diseases will continue spread at
astonishing rates, effecting the health of millions of Americans,
including over 1,000 children born with congenital syphilis.
Fortunately, the House of Representatives has chosen to act and we ask
that the Senate do the same and increase the 2020 funding for STD
prevention by $10 million and to take the additional step of providing
$5 million for an initiative to end congenital syphilis.
STDs are at epidemic levels and continuing to rise. Data from the
Centers for Disease Control and Prevention (CDC) tells us that between
2013 and 2017 syphilis cases increased 80 percent, gonorrhea cases
increased 67 percent, and chlamydia cases increased 22 percent.
Preliminary 2018 data from Florida, Mississippi, Missouri, Rhode
Island, Tennessee, Washington State, and South Carolina show that STD
rates continue to increase and will set a record for the fifth year in
a row. These epidemics are creating a public health emergency with
devastating health consequences including infertility, cancer,
transmission of HIV, and infant and newborn death in every corner of
our Nation. Supporting the first increase for STD prevention in over 15
years will be an important first step in demonstrating your concern
about the growing epidemic, and the health of your constituents and the
country as a whole.
Do you know that last year over 1,000 infants were born with
congenital syphilis in the United States? Congenital syphilis (CS) is
completely preventable-- it occurs when syphilis is passed from a
mother to her baby during pregnancy or delivery; reported cases have
more than doubled between 2013 and 2017 from 361 cases to 918--the
highest number of recorded cases in 20 years--in 2018 there will be
more than 1,000 congenital syphilis cases. These cases are
heartbreaking-- up to 40 percent of children born with congenital
syphilis will die and the vast majority of these cases are preventable.
Are you aware that in 2017 congenital syphilis cases surpassed the
number of perinatal HIV cases? This is largely thanks to the Federal
investment in innovative approaches, the number of reported perinatal
HIV cases has decreased; with your support we can see similar results
for congenital syphilis. The Senate must invest $5 million in direct
service funding for congenital syphilis prevention and treatment.
The Nation's drug crisis is also having a direct effect on
increasing STD rates. On February 14, 2019 a new study from CDC shows
that over the last 5 years, methamphetamine, heroin, and other
injection drug use more than doubled among heterosexuals with syphilis.
STD programs at State and city health departments are ill-equipped to
prevent and treat STDs with the added burden of addressing substance
abuse disorders. One of our members who oversees a STD program has said
the following about this crisis: ``STD clinics are essential safety net
services for people who otherwise wouldn't have access to healthcare.
The people who come to our STD clinics are often affected by the opioid
epidemic and the services we provide are essential to keeping these
individuals and their communities healthy.'' If you care about dealing
with the infectious disease consequences, then include support for STD
services in your response to the opioid epidemic.
If you hope to end the HIV epidemic in this country, then follow
the example of the House of Representatives and instruct CDC to include
funding for STD programs as important partners in ending the HIV
epidemic. These additional funds should be used to: increase HIV
testing and linkage to care and for PrEP services at STD clinics;
increase Disease Intervention Specialists--boots on the ground experts
in community work to prevent STDs and HIV by linking people to care,
investigating outbreaks, and providing partner services; increase
condom availability and improve data sharing across STD and HIV
programs.
In summary, the Federal STD program at CDC has been level funded
for 15 years and as a result we have STD rates at epidemic, historic
levels and climbing. Level funding means crumbling infrastructure and
inadequate tools for preventing new cases of STDs. In order to bend the
curve on rising STD rates the Senate must:
--Increase STD funding by $10 million in fiscal year 2020
--Invest $5 million in ending Congenital Syphilis
--Include support for STD programs in response to both the opioid and
HIV epidemics.
By taking these small steps, the Senate will show its support for
this crucial public health program, and avert STD consequences
including infertility, newborn death, new HIV cases, and cancer.
If you have any questions or would like additional information,
please contact NCSD's Taryn Couture, Associate Director of Government
Relations, at [email protected].
Sincerely.
[This statement was submitted by David Harvey, Executive Director,
National Coalition of STD Directors.]
______
Prepared Statement of the National College Access Network
Dear Chairman Blunt and Ranking Member Murray,
Thank you for your continued leadership over the past two funding
cycles to reinforce investments in the programs that support students
from low-income backgrounds in their pursuit of higher education.
Today, we write first to respectfully request first that the caps be
increased for non-defense discretionary funding to prevent unnecessary
and automatic cuts to these important programs. This would allow for
the continued strong support of the Nation's higher education system
and students. And second, NCAN recommends these specific funding levels
for the U.S. Department of Education programs:
--A maximum Pell Grant of $6,753.
--Supplementary Educational Opportunity Grant funding of $1.028
billion.
--Federal Work-Study funding of $1.434 billion.
--TRIO program funding of $1.12 billion.
--GEAR UP funding of $395 million.
--MSIs funding to sustain losses due to the expiration of mandatory
funding.
Additionally, we would request Corporation for National and
Community Service--specifically its AmeriCorps program that allows some
college access programs to provide near-peer mentors for their
students--receive, at minimum, level funding.
The National College Access Network, founded in 1995, represents
more than 450 members across the country that all work toward NCAN's
mission to build, strengthen, and empower communities 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. All are dedicated to helping underrepresented
students access, afford, and succeed in higher education. The Federal
investments that would most bolster this goal include the following:
pell grant investments
The Pell Grant award is the cornerstone of financial aid for low-
income students. Without this need-based grant funding, an even smaller
portion of low-income students would be able to access higher
education. Congress recognized the importance of the Pell Grant over
the past 2 years by investing in increases in the maximum award of $175
and $100, respectively. Given that the previously required automatic
inflationary increases have expired, these annual investments by
Congress and crucial to preventing 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 still holding at a historic low of 28 percent
of the cost of attendance.
Due to this loss of purchasing power, NCAN asks for consideration
of a bold, multiyear proposal to address the long-term purchasing power
of the Pell Grant. At its peak in 1975-76, the maximum Pell Grant award
covered nearly four-fifths of a public four-year college education.
NCAN realizes the fiscal challenges that face Congress and therefore
recommends a multi-year interim step that would return Pell's
purchasing power to 50 percent of the cost of a four-year public higher
education, or approximately doubling the Pell Grant over the next
decade. In order to reach that goal NCAN recommends increasing the
maximum Pell Grant 9 percent a year, each year, over the next decade.
This plan would result in fiscal year 2020 appropriations including a
maximum Pell Grant of $6,753.
If Congress had continued to adjust the maximum Pell Grant award
for inflation from 1975, it would be $6,655, only $98 less than
requested above. At minimum, Congress should increase the maximum by
$150, to $6,345, to match the inflationary adjustment that would have
taken place had the automatic adjustments continued.
campus-based aid
As low-income students are piecing together the resources to
support their postsecondary pursuits, every dollar and every type of
aid counts. For most low-income students, the Supplemental Educational
Opportunity Grant (SEOG) and Federal Work-Study help to fill holes in
their financial aid packages.
--The average SEOG award for dependent students was $800 for the
2016-17 award year. For the 2018 fiscal year, Congress
generously increased the SEOG budget by 14.6 percent, bringing
it to $840 million and then held that funding steady for fiscal
year 2019. Providing an increase again for fiscal year 2020
will allow institutions of higher education to support a
greater percentage of the country's lowest-income students. For
fiscal year 2020, NCAN respectfully requests that Congress fund
the SEOG program at a total of $1.028 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 fiscal year 2020, NCAN respectfully requests
that Congress increase the FWS program budget for a total of
$1.434 billion.
federally funded college access programs--trio and gear up
With approximately 1.8 million high school seniors defined as low-
income annually, many programs are needed to meet all of their needs as
they pursue their options after high school graduation. The NCAN
community serves approximately 2 million students annually from middle
school through college graduation. To reach all of 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: $1.12 billion for TRIO and
$395 million for GEAR UP.
minority serving institutions
The Higher Education Act (HEA) provides targeted funding to
historically black colleges and universities, Hispanic serving
institutions, and other minority serving institutions. These
institutions serve the students of color, who are disproportionately
low-income, at the core of NCAN's mission. Given the delay in
reauthorizing, the appropriations process serves as a short-term
mechanism to ensure that these programs that support the institutions
supporting our students do not receive a drastic fall in their
resources. NCAN respectfully requests that discretionary appropriations
are increased to sustain all programs receiving mandatory
appropriations provided for in HEA Sec 391 until the Higher Education
Act can be renewed.
corporation for national and community service
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. In particular, many of
NCAN's largest members are able to maximize their impact on
underrepresented students by participating in the AmeriCorps public-
private partnership. Continuing support for CNCS, and in particular 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 at minimum level funding.
Thank you for this opportunity to provide our funding priorities
for the fiscal year 2020. A low-income student is about half as likely
to complete a postsecondary degree or credential as a high-income
student. Through continued supports--both financial and programmatic--
our country can work together to close this attainment gap. Thank you
again for your support of this important goal.
Sincerely.
[This statement was submitted by Kim Cook, Executive Director,
National College Access Network.]
______
Prepared Statement of the National Congress of American Indians
The National Congress of American Indians (NCAI) is the oldest,
largest, and most representative national organization serving the
interests of tribal governments and communities. For 75 years, tribal
governments have come together as a representative congress through
NCAI to consider issues of critical importance to tribal governments
and formulate consensus policy positions. NCAI appreciates the chance
to provide the following testimony on funding for tribal and related
programs that serve Native people.
u.s. department of education
Access to quality education is vital for competing and thriving in
today's economy. It is an essential strategy for creating jobs and
securing the Nation's future prosperity--particularly in tribal
communities. An educated citizenry serves as a catalyst to boost tribal
economic productivity and growth through a more highly-skilled
workforce, which can attract new businesses, reduce unemployment,
stimulate reservation economies through direct spending, and foster
growth in small businesses owned by tribal citizens as a path to
individual and familial self-sufficiency. Accordingly, NCAI requests
the following levels of programmatic support.
U.S. DEPARTMENT OF EDUCATION FISCAL YEAR 2020 REQUESTS
------------------------------------------------------------------------
NCAI Fiscal Year 2020
Department Education Programs Request
------------------------------------------------------------------------
Title 1, Part A (Local Education Agency Grants) $20,000,000,000
State-Tribal Education Partnership (STEP) $5,000,000
Program.......................................
Title VII funding, ESEA (Impact Aid Funding)... $2,000,000,000
Title VI funding, Every Student Succeeds Act $198,000,000
(ESSA)........................................
Native Hawaiian Student Education (Title VI, $40,000,000
Part B).......................................
Alaska Native Education Equity Assistance $40,000,000
Program (Title VI, Part C)....................
Indian Education Language Immersion Grants $5,000,000
(Title VI, Part D)............................
Special Programs for Native Student, Including $67,900,000
Native Youth Community Projects...............
Title III-A Grants under the Higher Education $65,000,000
Act for Tribal Colleges and Universities......
Tribal Colleges and Universities: Adult/Basic $8,000,000
Education.....................................
Tribally Controlled Post-Secondary Career and $10,000,000
Technical Institutions and Technical
Institutions..................................
Native American-Serving, Non-Tribal $10,000,000
Institutions (Higher Education Act, Title III-
F)............................................
Tribal Education Departments (Dept. of Ed)..... $10,000,000
------------------------------------------------------------------------
Indian Education: Alaska Native Education Program (Title VI, Part
C) and Native Hawaiian Education Program (Title VI, Part B): NCAI is
concerned that the President's fiscal year 2020 budget eliminates
funding for the Alaska Native Education Program and the Native Hawaiian
Education Program. The Alaska Native Education Program is an essential
program that funds the development of curricula and education programs
that address the unique educational needs of Alaska Native students, as
well as the development and operation of student enrichment programs in
science and mathematics. The Native Hawaiian Education Program empowers
innovative, culturally appropriate programs to enhance the quality of
education for Native Hawaiians. It is important to emphasize neither of
these programs are duplicative of other programs. NCAI recommends
funding the Alaska Native Education Assistance Program at $40 million
and the Native Hawaiian Education Program at $40 million for fiscal
year 2020.
u.s. department of health and human services
The Federal promise to provide Indian health services was received
in good faith by our ancestral tribal leaders to lay the foundation for
peaceful co-existence of our great nations. By tribal nations ceding
much of their lands, the United States was able to prosper and build
great wealth, leaving First Americans to try to build a life within
this new nation. The Federal responsibility for providing healthcare to
Native people was prepaid by tribal nations. The United States assumed
this responsibility through a series of treaties with tribal nations,
exchanging compensation and benefits for tribal lands and peace. NCAI
requests the following levels of programmatic support in furtherance of
the Federal treaty and trust responsibilities.
DEPARTMENT OF HEALTH AND HUMAN SERVICES FISCAL YEAR 2020 REQUESTS
------------------------------------------------------------------------
Department of Health and Human Services NCAI Fiscal Year 2020
Programs Request
------------------------------------------------------------------------
Total Fiscal Year 2020 Indian Health Service $7,030,369,000
Funding.......................................
Services................................... $5,242,487,000
Contract Support Costs..................... $900,000,000
Facilities................................. $887,883,000
Special Diabetes Program for Indians (SDPI).... $200,000,000
On the TRAIL (Together Raising Awareness for $1,000,000
Indian Life) to Diabetes Prevention Program...
HRSA Native Hawaiian Healthcare Systems Program $19,000,000
Ending HIV Epidemic/Hepatitis C Initiative..... $25,000,000
Head Start..................................... $10,810,000,000
TCU Head Start Partnership Program............. $8,000,000
Native Languages Preservation (NLP), with $14,000,000 for NLP,
Esther Martinez Program (EMP)................. W/$5,000,000 for EMP
Promoting Safe and Stable Families, Title IV-B, $100,000,000
Subpart 2 Discretionary Funds (3 percent
tribal allocation reserved from this amount)..
Tribal Court Improvement Grant Program $3,000,000
(authorized under Title IV-B, Subpart 2)......
Child Abuse Discretionary Activities, $38,000,000
Innovative Evidence-Based Community Prevention
Program.......................................
Community-Based Child Abuse Prevention......... $50,000,000
Maternal Infant and Early Childhood Home $420,000,000
Visiting Program..............................
Child Welfare Services, Title IV-B, Subpart 1 $280,000,000
(tribal allocation reserved from this amount).
SAMHSA Programs of Regional and National $8,000,0000
Significance, Child and Family Programs.......
SAMHSA Garrett Lee Smith Grants, State/Tribal $40,000,000
Youth Suicide Prevention and Early
Intervention Grant............................
SAMHSA Garrett Lee Smith Grants, Campus Suicide $9,000,000
Prevention Program............................
SAMHSA American Indian and Alaska Native $5,000,000
Suicide Prevention............................
SAMHSA Tribal Behavioral Health Programs $50,000,000
(Mental Health and Substance Abuse Programs)..
Older Americans Act (Title VI-Part A,B)........ $36,000,000
Older Americans Act (Title VI-Part C).......... $10,600,000
Older Americans Act (Title VII-Subtitle B) 1 $4,700,000,000 with
percent tribal set-aside Low Income Home $51,000,000 allocated
Energy Assistance Program (LIHEAP)............ to tribes and tribal
organizations
------------------------------------------------------------------------
Substance Abuse Mental Health Services Administration: These funds
are critical to supporting mental health services and substance abuse
prevention activities aimed at high-risk American Indian and Alaska
Native youth and their families. NCAI requests $50 million in total for
SAMHSA Tribal Behavioral Health Programs ($25 million for Mental Health
and $25 million for Substance Abuse Programs).
Head Start: Head Start funds provide early education to more than
24,000 Native children. This vital program combines education, health,
and family services to model traditional Native education, which
accounts for its success rate. NCAI requests $10.81 billion in total
funding for Head Start, which includes Indian Head Start. Additionally,
NCAI requests $8,000,000 to fund the Tribal Colleges and Universities
(TCUs) Head Start Partnership Program.
Low-Income Home Energy Assistance Program (LIHEAP): NCAI requests
$4.7 billion for LIHEAP, with $51 million directly allocated to tribes
and tribal organizations. LIHEAP helps low-income households and
seniors with their energy bills, providing vital assistance during both
the cold winter and hot summer months.
u.s. department of labor
Honoring the Federal Government's trust responsibility by
addressing key economic needs will help expand tribal economies through
increased business and workforce development opportunities. The
following fiscal year 2020 budget requests set forth appropriation
levels that are essential to empowering self-determined tribal efforts
to seed economic prosperity and advance the economic security of tribal
nations.
DEPARTMENT OF LABOR FISCAL YEAR 2020 REQUESTS
------------------------------------------------------------------------
NCAI Fiscal Year 2020
Department of Labor Programs Request
------------------------------------------------------------------------
YouthBuild Program............................. $89,000,000
Division of Indian and Native American Programs $60,500,000
(DINAP).......................................
Native American Employment and Training Council $125,000
Older Americans Act (Title V), Senior Community $434,371,000
Service Employment Program....................
------------------------------------------------------------------------
Senior Community Service Employment Program (SCSEP): NCAI urges
Congress to fund SCSEP at $434 million. This program is the only
Federal job training program focused exclusively on helping older
Americans return to the workforce. Through the program, low-income job-
seekers (55 years of age or older) update their skills and contribute
to their communities through paid, on-the-job training at schools,
hospitals, senior centers, tribal facilities, and other non-profit or
public facilities.
corporation for public broadcasting
The ability to communicate keeps communities safe and promotes
trade and commerce. Tribal access to modern communications networks
supports economic development, tribal governance, healthcare,
education, and public safety in tribal and surrounding communities.
NCAI requests the following levels of programmatic support.
CORPORATION FOR PUBLIC BROADCASTING FISCAL YEAR 2020 REQUESTS
------------------------------------------------------------------------
NCAI Fiscal Year 2020
Corporation for Public Broadcasting Request
------------------------------------------------------------------------
American Indian and Alaska Native Radio Station $5,000,000
Grants........................................
Native Public Media............................ $500,000
Native Public Media and Koahnic Broadcast $500,000
Corporation...................................
------------------------------------------------------------------------
conclusion
NCAI appreciates the opportunity to share these recommendations.
Please contact Government Affairs Director Jacob Schellinger
([email protected]) or Policy Analyst Nick Courtney
([email protected]) if you have any questions.
______
Prepared Statement of the National Council for Diversity in the
Health Professions
Chairman Blunt, Ranking Member Murray, 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. I am proud to put forth the following
recommendations for the fiscal year 2020 appropriations process:
--$8.56 billion for the Health Resources and Services Administration
(HRSA)
--$45.21 million for HRSA's: Centers of Excellence (COE)
--$47.95 million for HRSA's: National HCOP Academies
--$1.75 million for HRSA's: Faculty Loan Repayment
--$63.39 million for HRSA's: Scholarships for Disadvantaged
Students.
NCDHP is recommending funding levels for COEs and HCOPs comparable
to the levels appropriated 15 years ago in fiscal year 2005, adjusted
for inflation.
NCDHP is dedicated to promoting the education and training of a
workforce that is prepared to provide quality and culturally responsive
healthcare to the diverse U.S. population. NCDHP members across the
nation are actively involved in health professions education and
training, the development of educational pipeline programs for
individuals from disadvantaged backgrounds, and the delivery of
healthcare to the underserved. Through HRSAs Title VII workforce
diversity programs, addressing the long-term healthcare and health
professional needs of minority and underserved communities is
obtainable. Pipeline program interventions exert a meaningful and
positive effect on student outcomes in the health professions. When
institutions are strengthened through programs like the COE program,
the national capacity to produce a healthcare workforce whose racial
and ethnic diversity is representative of the U.S. population is
greatly enhanced. The COE program provides grants to health professions
schools and other public and nonprofit health or educational entities
to increase the supply and competence of underrepresented minority
practitioners in the health professions workforce. Programs like the
National HCOP Academies or HCOP increase the diversity of the non-
nursing health professions workforce by providing grants that improve
the recruitment opportunities into the health professions and enhance
the academic preparation of students from economically and
educationally disadvantaged backgrounds. This program supports students
from high school through the completion of their health professions
degree. In many instances, it even offers opportunities, such as summer
enrichment programs, to ensure the retention and interest of students
recruited. Furthermore, The Title VII workforce diversity programs
allow institutions to adhere to the best practices in increasing
diversity in the health professions as well. These programs allow for
institutions to further target and recruit disadvantaged students and
offer holistic and comprehensive experiences to their students,
institutions to recruit and retain invested faculty to work in
underserved communities and underrepresented students, and students to
have the financial means of funding their educational experiences.
As you begin the fiscal year 2020 process, NCDHP asks that you
further prioritize Title VII health professions training programs.
Chairman Blunt, Ranking Member Murray, 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 fiscal year 2020 and the future.
[This statement was submitted by Wanda Lipscomb, PH.D., President,
National Council for Diversity in the Health Professions.]
______
Prepared Statement of the National Council of Social Security
Management Associations
On behalf of the National Council of Social Security Management
Associations (NCSSMA), thank you for the opportunity to submit this
testimony regarding the Social Security Administration's (SSA's) Fiscal
Year 2020 Appropriation. NCSSMA respectfully requests that Congress
provide at least $13.511 billion in fiscal year 2020 for SSA's
Limitation on Administrative Expenses (LAE) account. This level of
funding will help ensure the agency can continue to build on the
improvements currently underway.
SSA RESOURCES AND KEY FIELD OFFICE AND TELESERVICE CENTER WORKLOAD SERVICE DELIVERY PERFORMANCE
----------------------------------------------------------------------------------------------------------------
Fiscal Year
---------------------------------------------------
2016 2017 2018 2019
----------------------------------------------------------------------------------------------------------------
SSA's Enacted LAE Funding ($ in Millions)................... $12,162 $12,482 $12,869 $12,871
Field Office and Teleservice Center Staff\1\................ 32,859 31,669 31,913 31,591\2\
Visitors.................................................... 43,493,551 42,048,301 42,614,871 43,000,000\
3\
Left Without Service........................................ 2,085,444 1,971,663 2,014,651 2,000,000\3
\
Wait Time Without Appointment (Minutes)..................... 28.2 26.5 26.5 28.8\2\
Wait Without Appointment Over 60 Minutes.................... 12.5% 11.0% 10.1% 13.0%\2\
Calls Answered.............................................. 20,715,568 20,140,219 19,264,131 20,000,000\
3\
Calls Unanswered............................................ 5,090,701 5,094,339 4,513,100 4,500,000\3
\
Phone Answer Rate........................................... 80.3% 79.8% 81.0% 81.0%\3\
SSI Redeterminations........................................ 2,530,446 2,590,070 2,913,451 2,822,000\4
\
Medical CDRs................................................ 833,145\5\ 854,621\5\ 888,670\5\ 703,000\4\
Work CDRs................................................... 279,945 313,546 314,396 315,000\3\
----------------------------------------------------------------------------------------------------------------
\1\ Full-time permanent staffing in field offices and teleservice centers.
\2\ Figure through March 29, 2019.
\3\ NCSSMA estimated for fiscal year 2019.
\4\ Figure from SSA's Fiscal Year 2019 Congressional Justification.
\5\ DDS Performance Report for TII and TXVI CDR Dispositions.
We recognize the current fiscal constraints facing legislators, but
we request that Congress provide fiscal year 2020 funding for SSA that
is sufficient to improve service to the public while addressing
stewardship responsibilities and making much-needed IT infrastructure
and systems upgrades. We believe that a $640 million increase over
fiscal year 2019 would be a significant step in the right direction,
and is needed in order to continue addressing disability backlogs in
the hearing offices, initial claims and post-entitlement backlogs in
the Program Service Centers and significantly reduced staffing levels
in both field offices and teleservice centers. In addition, the Acting
Commissioner of Social Security expressed similar resource needs in
fiscal year 2020:
``... The Commissioner's budget includes $13,484 million for total
administrative discretionary resources in 2020. This represents
$13,270 million for SSA administrative expenses, $106 million
in research, and $108 million for the Office of the Inspector
General.''
We very much appreciate that the House Appropriations Committee
recognized the need for increased funding for fiscal year 2020 to help
address public service at SSA's field offices and teleservice centers,
and included the following Report language earlier this year:
The Committee includes an increase of $300,000,000 for additional
hires and resources to improve public service at SSA field
offices and direct service operations, with $22,000,000
specifically for hiring at teleservice center operations. The
Committee remains concerned about the excessive waiting times,
benefit delays, and service problems faced every day by
Americans who are trying to access their earned benefits. It is
the Committee's expectation that this funding will be
sufficient to replace all losses in the field offices,
teleservice and processing centers, and build additional
capacity so that offices can function at appropriate levels.
community-based service
The statements below demonstrate how sufficient resources for SSA
have a positive impact on the agency's ability to deliver vital
services to the American public and in fulfilling the agency's
stewardship responsibilities.
A client had a hearing pending and was in critical condition in the
ICU. The field office worked with the representative and
hearing office to expedite the case. The Administrative Law
Judge (ALJ) agreed to expedite only considering his current
condition (progressive stage IV throat cancer). The field
office continued to advise on the various outcomes regarding an
amended onset and to obtain the documents needed so the judge
could make an ``on the record'' decision. In the end, the
client received a quick hearing decision thanks to everyone
working together.--Florence, Alabama
A homeless individual came into the local field office, accompanied
by a friend he had just started living with. He was advised to
go to SSA to file a claim for disability benefits. He had just
returned to Missouri from another State. Upon review of his
record, we found the individual had already filed a claim for
disability benefits, had been approved 3 years prior, and had
been put into suspense because his whereabouts were unknown.
The local office assisted him in getting his benefit
reinstated, and because his underpayment was a large sum of
money, the SSA technician counseled him on proper use of the
underpayment. As a result, he was able to purchase a home in a
small town in Kansas, and have funds left over to live on.--
Chillicothe, Missouri
Our office serves a local State agency that cares for individuals
diagnosed with profound mental impairments, such as Down
Syndrome. During a recent audit, we conducted a 'meet and
greet' with the point person at this agency. We streamlined the
communication between our office enhancing service to this
vulnerable population. Additionally, we found several missed
disabled child benefits entitlements. It appeared as the
individuals began to age, information about their parents was
never reported to SSA.--Conway, Arkansas
A Waterbury man, who was an end stage renal patient, was at risk of
losing his new kidney when his Medicare benefits terminated;
leaving him unable to afford his kidney transplant medications.
The man had lapsed in paying his Medicare premiums, but
recently made his payments current. He had been waiting
patiently for Social Security's PSC to reinstate his Medicare,
but time was running out and he was running out of medication.
He contacted the office and management researched the premium
problem and brought the issue to the attention of the PSC. The
PSC and field office worked together to ensure that his case
would get priority attention so that he would not be in
jeopardy of losing his new kidney.--Waterbury, Connecticut
When SSA's administrative resource needs are unmet, it results in
deterioration in key service areas and stewardship workloads. Over
fiscal year 2016, the agency saw an increase of about 2 million
visitors from the previous year. We expect those numbers to remain
relatively constant through fiscal year 2019. Almost 4 million actions
are currently pending in the agency's Program Service Centers. These
actions are not just numbers, they are actual people, waiting to
receive assistance from SSA. Beginning this fiscal year through March
2019, there has been a deterioration in SSA's 800 number service, with
a 29-minute wait. This is a 5-minute increase over fiscal year 2018.
Over the past two fiscal years, pending hearings have fallen below the
one million mark. At the close of fiscal year 2018, there were over
858,000 people waiting for a hearing decision, with an average
processing time of 595 days. Sadly, in fiscal year 2017 over 10,000
individuals died while waiting for a decision on their disability
application, an increase of more than 1,300 deaths from the prior year.
If SSA's administrative funding is not sufficient, we will not be able
to continue reducing these backlogs, and public service levels will
degrade further.
funding for fiscal year 2020
Sufficient resource allocations in fiscal year 2020 are required to
address the massive hearings backlog, increased workloads, visitors,
and telephone calls in field offices and to the National 800 Number,
while at the same time maintaining deficit-reducing program integrity
work. Resources are also necessary to advance SSA's efforts to
undertake an Information Technology (IT) Modernization Plan that will
significantly enhance the agency's systems and improve productivity.
SSA must continue to modernize its computer language, databases and
systems infrastructure. Although the fiscal year 2018 Consolidated
Appropriations Act designated $280 million to support SSA's IT
modernization efforts, without continued funding of SSA's IT needs in
fiscal year 2020, there remains the risk for significant service
disruptions and reduced system performance and production.
We very much appreciate that the House Appropriations Committee
recognized the ongoing importance of advancing the agency's IT
Modernization Plan while maintaining an appropriate balance between the
service delivery options available to the public. In support of the
following language, NCSSMA members nationwide are interested and
willing to play an active role in development, testing and deployment
of enhancements to existing systems in addition to new technology and
programs.
Information Technology.--The Committee continues to monitor the
Information Technology Modernization Plan and remains concerned that
while SSA undertakes information technology upgrades and improvements,
the agency must also maintain an appropriate balance between SSA's
various service delivery options. As the agency continues to focus on
modernizing information technology and systems, the Committee strongly
encourages SSA to focus on enhancements that positively affect service
to the public and add efficiency to administration of its programs. In
addition, the Committee encourages involvement of agency front-line
staff, those most familiar with the use of such programs, in all
aspects of development, testing and deployment. The Committee requests
an update of the plan referenced under this heading in House Report
114-699.
conclusion
NCSSMA respectfully requests that Congress consider allocating at
least $13.511 billion for SSA's LAE account in fiscal year 2020 to meet
the agency's multitude of public service responsibilities. SSA must
have the resources necessary to provide quality service to the American
public, maintain program integrity efforts that save taxpayer dollars,
and continue to address the high volumes of initial claims being filed
and post-entitlement work.
On behalf of NCSSMA members nationwide, thank you for the
opportunity to submit this written testimony. We respectfully ask that
you consider our comments and would appreciate any assistance you can
provide to ensure the American public receives the critical and
necessary service they deserve from the Social Security Administration.
[This statement was submitted by Peggy Murphy, President, National
Council of Social Security Management Associations.]
______
Prepared Statement of the National Council of Urban Indian Health
My name is Maureen Rosette and I am the President of the National
Council of Urban Indian Health (NCUIH), which represents the 42 urban
Indian healthcare organizations (UIOs) across the Nation who provide
high-quality, culturally-competent care to urban Indians, constituting
approximately 78 percent of all American Indians/Alaska Natives (AI/
AN). I would like to thank both Chairman Blunt and Ranking Member
Murray for holding this important hearing. My testimony today will
focus on the needs of urban Indian organizations (UIOs).
As a preliminary issue, ``urban Indian'' refers to any AI/AN person
who is not living on a reservation, either permanently or temporarily--
often because of the Federal Government's forced relocation policy or
in search of economic or educational opportunity. Congress has long
recognized that the Federal Government's obligation to provide
healthcare for AI/AN people follows them off of reservations. UIOs are
an integral part of the Indian Health System (IHS), which is comprised
of the IHS, federally recognized Tribes, tribal organizations, and
urban Indian organizations (I/T/Us). Currently, UIOs receive less than
1 percent of the IHS budget, and the IHS budget is currently
underfunded at less than 50 percent of need creating serious budget
constraints. UIOs do not have access to many of the critical cost
saving programs available to the other facets of the I/T/U system.
It is because of this historical underfunding that NCUIH advocates
and supports an increase in funding to a minimum of $81 million--$116
million for the Indian Health Services (IHS) urban Indian healthcare
line item, constituting 2 percent of the total IHS budget. The Indian
Health Services funding is authorized under the Indian Health Care
Improvement Act (IHCIA) [25 U.S.C. Sec. 160 et seq.] amended and
permanently reauthorized by the Patient Protection and Affordable Care
Act (ACA) [Public Law 111-148]. However, unlike IHS and federally
recognized Tribes, who receive funding from all IHS line items, UIOs
only receive funding from one source within the IHS budget--the urban
Indian line item.
Listed are NCUIH's recommendations to the Senate Labor, Health and
Human Services, Education, and Related Agencies Subcommittee on Fiscal
Year 2020 Appropriations:
Include Urban Indians in Language for ALL Health Programs
When urban Indians are not specifically mentioned in programmatic
language they are most often excluded from participating in such
programs. Many programs in the Health and Human Services appropriations
bills include language for Indian Tribes and Tribal organizations, but
not for urban Indian organizations. Urban Indian Organizations are not
considered Tribal organizations, which is a common misconception.
Therefore, UIOs must be explicitly included to receive funding.
Behavioral health grants, suicide prevention grants, and others. It is
imperative UIOs receive parity for funding as UIOs rely on less than 1
percent of the Indian Health Service (IHS) funds, despite urban Indians
being over 78 percent of the AI/AN population. UIOs also do not have
access to other IHS line items like IHS and Tribal facilities. UIOs do
not receive hospitals and health clinics money, purchase and referred
care dollars, or IHS dental services dollars, and are not eligible for
facilities dollars. UIOs operate from one line item in the IHS budget,
42 programs with $51.3 million. We know IHS is underfunded at around
$3,000 per patient, we know for urban Indian health patients that
number is less than $400 per patient.
Shutdown Impacts with Funding Uncertainties
When limited UIO funding is delayed or cut off during events such
as a government shutdown, UIOs suffer greatly. IHS and funded programs
must receive advance appropriations. AI/AN people healthcare should not
be held hostage by unrelated government shutdowns.
For instance, Native American Lifelines of Baltimore is a small
clinic that received three overdose patients during the last shutdown,
two of which were fatal. They only receive $922k from IHS to operate
two facilities, one in Baltimore, one in Boston. IHS only gives them
$691 for mental health services for both facilities. The Indian Health
Service system (I/T/U) should be provided with funding to ensure our
patients don't suffer. NCUIH as part of the National Tribal Budget
Formulation Workgroup, has continuously highlighted the dire threat of
sequestration. Medicare, Medicaid, the Children's Health Insurance
Program, and Department of Veterans Affairs--are largely exempt from
sequestration. IHS should be given the same favorable treatment. IHS
may be funded through what are known as discretionary dollars, but the
Federal Government's responsibility for Native American healthcare is a
trust responsibility, not discretionary. NCUIH requests that members of
this committee support and share with their distinguished colleagues
the importance of advanced appropriations for AI/AN healthcare.
Centers for Medicare and Medicaid Services
100 percent FMAP (Federal Medical Assistance Percentage) for UIOs:
We support the preservation of Medicaid and request the Federal
Government extend the 100 percent Federal Medical Assistance Percentage
(FMAP) to urban Indian healthcare organizations (UIOs). The Medicaid
service costs paid by the Federal Government is set by law at 100
percent for IHS and Tribes, but not for UIOs, because the law was
enacted at the same time that UIOs were created. UIOs were created by
Congress at the urging of Tribes to ensure their tribal citizens would
receive appropriate healthcare off of reservations. The failure to
provide UIOs with 100 percent FMAP harms facilities that do not already
have access to many other resources, severely limiting services for
patients. Unfortunately, CMS needs Congress to add UIOs to Sec. 1905
(42 U.S.C. 1396[d]) of the Social Security Act to create parity. We ask
that you correct this problem in fiscal year 2020. Receiving 100
percent FMAP has a huge impact on the financial stability of UIOs. One
of NCUIH's two Oklahoma facilities (the only two UIOs in the country
that get 100 percent FMAP) reported that in the event of a prolonged
shutdown they could remain open for over a year; whereas 6 of 13 UIO-
respondents reported they could only sustain normal operations for 1
month or less.
Exempt AI/AN from work requirements: Medicaid is vital for Indian
Country, accounting for roughly 13 percent of the overall IHS budget.
Moving Medicaid to a block grant system, as proposed in the fiscal year
2020 Budget Request, would devastate Indian health systems. We urge
Congress to require CMS use the Medicaid definition of AI/AN as well as
ensure AI/ANs are exempt from any mandatory work requirements in the
Medicaid program. If the work requirements proposed in the fiscal year
2020 Budget Request are applied to AI/ANs, it in turn, would deprive
the IHS system of Medicaid resources in direct contrary to
Congressional intent in Section 1911 of the Social Security Act and
frustrate the purpose of the Medicaid statute for Indian health. NCUIH
urges Congress to maintain the program while expanding its reach and
availability for AI/ANs.
SAMHSA
Tribal Behavioral Health Grants: We are pleased UIOs were included
in the increased funding for fiscal year 2019. These grants have
allowed Indian Country to address mental and substance abuse. We
request the Committee double the size of the TBHG program to $80
million total.
Opioid Funding: SAMHSA has awarded grants of approximately $50
million to American Indian and Alaska Native tribes to address the
opioid overdose epidemic in tribal communities due to the high rates of
overdose seen in comparison to other races/ethnic groups and NCUIH is
happy Congress provided Tribes with a set-aside for opioid funding.
These concerns are also seen in urban Indian communities, with many
States undercounting these numbers due to missed data collection
processes. Unfortunately, these funding sources to support treatment in
a culturally appropriate way were not available to UIOs, as the
eligibility was not explicit to include them. In fiscal year 2020 it is
imperative that funding for UIO efforts to combat this epidemic are put
in place to increase access to mental health services and meet unmet
needs, request at least $3 million in opioid dollars be directed for
UIOs with continued support and additional funding for Tribes and
Tribal organizations. AI/AN experience the second highest opioid
overdose rates.
Health Resources & Services Administration (HRSA)
11 out of the 42 UIOs are HRSA facilities. More UIOs would like to
become HRSA facilities but do not want to lose their identity as a UIO.
Because UIOs were created as part of the trust obligation--Tribes,
Tribal organizations and UIOs should be allowed to exclusively see AI/
AN patients and qualify as a HRSA facility. HRSA exemptions are too
narrow. NCUIH requests Tribes, Tribal organizations, and Urban Indian
Organizations become a third exemption, in line with the trust
obligation.
340B Program: The Administration is currently considering revamping
this program, with indications it will restrict its application.
Tribes, Tribal organizations and UIOs should be held harmless, as it
could provide a significant barrier to access to care for urban AI/ANs
HHS
HHS Tribal Consultation Policy: HHS is currently reviewing its
Tribal Consultation Policy. Department of Health and Human Services--
which, with the exception of IHS, is not required to specifically
consider or confer urban Indian organizations. NCUIH requests Congress
create a HHS Confer Policy similar to IHS.
Administration of Native Americans (ANA)
ANA is instrumental in creating great health and cultural programs
and we ask that rather than a $3 million cut, you increase it at least
$5 million. ANA tackles many issues in a culturally-relevant way, it is
vital to increase its funding.
Centers for Disease Control
Good Health and Wellness in Indian Country (GHWIC): The GHWIC
program is CDC's single largest investment in Indian Country. The
program funds a total of 35 Tribes and Tribal organizations to improve
chronic disease prevention efforts, expand physical activity, and
reduce commercial tobacco use. The fiscal year 2020 President's Budget
proposes elimination of this program. NCUIH requests the Committee
reject elimination of GHWIC and increase funding to $30 million for
fiscal year 2020. NCUIH requests UIOs be directly eligible for the
grants.
Opioid Funding: NCUIH appreciates Congress' efforts to combat
opioid abuse by providing over $60 million to Tribes and Tribal
organizations. However, UIOs were erroneously left out. We echo NIHB's
recommendations for an increase in Tribal funding as well as ask for
$10 million for UIOs, as over 78 percent of AI/AN live in urban
settings.
Funding for HIV, Viral Hepatitis, and Sexually Transmitted
Infections: NCUIH requests Tribes, Tribal organizations, and Urban
Indian Organizations have a 10 percent set aside of funding.
CDC Prioritizing AI/AN Data: Request that AI/ANs to be oversampled
in all primary data collection efforts to ensure a large enough sample
size to report findings. CDC has repeatedly shared that AI/AN sample
sizes are too small to be statistically significant and therefore left
out of local, regional, and national data reports. AI/ANs face stark
health disparities and without the data, CDC, Congress, the
Administration and others cannot ensure adequate resources are
allocated.
We thank the committee for its efforts towards prioritizing funding
to Indian Country within the HHS budget and for holding this public
witness hearing. The staff at NCUIH is available to follow up on any
future inquires related to my testimony or other urban Indian
healthcare issues of policy or service.
______
Prepared Statement of the National Energy and Utility Affordability
Coalition
The National Energy and Utility Affordability Coalition (NEUAC) is
a leader in the fields of public policy, advocacy, energy, and poverty
issues. Members of the organization include non-profit organizations,
energy assistance programs, trade associations, tribal organizations,
and utilities.
NEUAC currently serves more than 170 member organizations that span
the Nation. NEAUC provides its members with the tools to support
families and underserved populations including the elderly, disabled,
veterans, and families with young children. It is our mission to reduce
energy burden, especially for these vulnerable populations, and to
improve energy affordability.
NEUAC bridges the gap between States, social service organizations,
and government, and facilitates cooperation between utilities and
community partners to better serve our neighbors in times of energy
crisis.
summary of request
The U.S. Low Income Home Energy Assistance Program (LIHEAP) is
America's cornerstone energy safety net program, within the
jurisdictional responsibility of the U.S. Senate Subcommittee on Labor,
Health and Human Services, Education, and Related Agencies. LIHEAP is
federally administered by the U.S. Department of Health and Human
Services, Administration of Children and Families, Office of Community
Services.
The current Administration has proposed elimination of LIHEAP for
three consecutive years. This is unthinkable. Thousands of households
in your States would be adversely impacted by such a decision. Many
families are perched on the precipice of poverty, where a singular
unexpected event has the potential to send the family budget spiraling.
It takes only one lost job, one desperate diagnosis, or one unexpected
financial crisis. Any unplanned misfortune has the potential to
adversely affect a family's ability to manage their household budget.
LIHEAP was funded in fiscal year 2019 at $3.69 billion. The program
was last authorized at $5.1 billion. With only one in every five
eligible households served, even the maximum authorized funding would
be inadequate to meet the need.
Congress has demonstrated that LIHEAP is a national priority and
has repeatedly protected funding for the program. NEUAC thanks this
Subcommittee and its members for their leadership and strong support
for LIHEAP. We respectfully request your support again this year to
improve funding for LIHEAP.
eligibility for liheap
LIHEAP provides support to households with very limited or fixed
incomes that helps reduce their energy burden, which is the percentage
of household income spent on utility needs. Congress has entrusted
States to set income LIHEAP eligibility levels up to 60 percent of
State median income or 150 percent of the Federal poverty guidelines.
Because of funding constraints, many States set the bar substantially
below these thresholds.
States are authorized to address heating or cooling assistance and
crisis situations with LIHEAP funds. They also may target a portion of
LIHEAP funds for residential weatherization to improve energy
efficiency and affordability for qualified households.
demonstration of need
The need for LIHEAP is far greater than the Federal resources
provided to serve these vulnerable families. The National Energy
Assistance Survey demonstrated that LIHEAP recipients are forced to
make unthinkable choices between necessities like food or medicine or
heat for their homes. In situations like these, LIHEAP provides bill
payment assistance to keep the lights and heating or cooling turned on.
This type of direct assistance to maintain utilities and prevent shut-
off is one way LIHEAP combats energy poverty, but it is not the only
way.
LIHEAP is one of the very few funding resources that may be used to
repair or replace home heating and cooling systems for eligible
households. According to the National Energy Assistance Survey, more
than 25 percent of LIHEAP households cannot afford to repair or replace
their home's non-functioning air conditioning systems, and 20 percent
cannot afford to repair or replace a non-functioning heating system.\1\
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\1\ https://neuac.org/news-room/press-releases/2019-national-
energy-survey/.
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The inability to maintain utilities can be tragic. Remember the
polar vortex. Remember the deadly heat waves. Unlike some other Federal
assistance programs, being eligible for LIHEAP does not entitle a
household to benefits. Funds are limited by the amount that Congress
appropriates each year, despite unmet need.
Poverty is a pervasive issue in the Mississippi Delta, where
economic mobility is worse than anywhere else in the developed
world.\2\ In December 2018, a Mississippi couple died from what is
believed to be carbon monoxide poisoning. The couple was found lying
next to each other in a small portable building that had no
electricity. They had a small propane generator in the center of the
house that they were using for power.\3\
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\2\ https://www.pbs.org/newshour/show/poverty-stricken-past-
present-mississippi-delta.
\3\ http://time.com/3773584/carbon-monoxide-family-poisoning/.
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A Maryland father and his seven children also died of carbon
monoxide poisoning from a generator left on overnight to heat their
home. According to reports, the father was struggling to provide for
his family and could not afford to turn on his utility service.\4\
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\4\ https://www.apnews.com/4f3d55caf7be4dcab948c37ca0c6f44e.
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Stories such as these highlight the unmet need in a program that
has borne multiple reductions and reallocations in the past decade,
creating an untenable strain on those who implement the program and
those who rely on LIHEAP for assistance.
funding request
The House has proposed to increase LIHEAP by $150 million in fiscal
year 2020, bringing total funding to $3.84 billion. NEUAC appreciates
the unwavering bipartisan support for LIHEAP in Congress.
NEUAC urges the Senate committee to consider the program's current
fiscal and humanitarian challenges and work with appropriators and HHS
leadership to further increase the program's budget in fiscal year
2020. The Energy Policy Act of 2005 authorized LIHEAP at $5.1 billion.
It would take even greater funding to adequately address the need and
ensure access to safe, affordable energy for all. NEUAC requests that
the committee consider these facts when making funding decisions for
fiscal year 2020 and maximize the funds available for LIHEAP.
Thank you for the opportunity to express the views of the National
Energy and Utility Affordability Coalition on this important matter. On
behalf of the 6 million households annually served by LIHEAP and the
millions more hardworking American families that could be served with
improved funding, we appreciate your consideration.
[This statement was submitted by Katrina Metzler, Executive
Director, National Energy and Utility Affordability Coalition.]
______
Prepared Statement of the National Energy Assistance Directors'
Association
The National Energy Assistance Directors' Association (NEADA),
represents the State directors of the Low-Income Home Energy Assistance
Program (LIHEAP). For fiscal year 2020 we are requesting the
Subcommittee provide no less than $4.7 billion for LIHEAP, the same
level as provided in fiscal year 2011. We believe that this level of
funding would achieve the objectives of a letter signed by 44 Senators
on April 13, 2019 addressed to the Senate Appropriations Committee
asking that ``you continue to prioritize funding for this vital program
in fiscal year 2020 to help ensure that it meets the needs of eligible
low-income households and seniors.''
The funding request will allow States to restore program services
to the level provided in fiscal year 2011 when LIHEAP was last funded
at $4.7 billion. In that year, LIHEAP was able to help 6.9 million
households and cover about 63 percent of the cost of their home heating
with an average annual grant of $560. In contrast, in fiscal year 2019,
program funding was about $3.7 billion, $1 billion less than the amount
of funding provided in fiscal year 2011.
What difference did a cut of $1 billion in Federal funding make to
low income families? The reduction in funding between fiscal year 2011
and fiscal year 2019 has had a significant and profound impact on the
ability of LIHEAP to help poor families. First, the estimated number of
families helped declined by about one million from 6.9 million to 5.9
million. Second, the estimated average annual grant was reduced from
about $560 to $492. The average purchasing power during this time was
also reduced from about 63 percent of the cost of home heating to 55
percent of the cost of home heating.
We understand that there are significant budget pressures this year
and we want to emphasize that while $4.7 billion is the funding level
that we believe is needed, there is absolutely no room to cut the
current funding level of LIHEAP without harming millions of very
vulnerable households.
We would also like to thank the members of the subcommittee for
increasing fiscal year 2019 LIHEAP funding by $50 million to $3.69
billion. The additional funding has allowed States to help families
facing shut-off of utility service and pay off higher heating oil and
propane bills as a direct result of higher prices and colder winter
conditions. In addition, the funding will help States increase
assistance for cooling programs this summer.
price of home heating remains unaffordable
The average cost of home heating has remained unaffordable for
millions of low-income households this winter across the country with
an average annual price of $918, representing an increase of $30 more
than the comparable cost of home heating last year. According to the US
Energy Information Administration, the average home heating cost this
winter for those using propane increased from $1,534 to $1,604, heating
oil from $1,376 to $1,520, electricity from $1,144 to $1,174 and
natural gas from $565 to $584.
reject the administration's budget
The Administration's Budget, if enacted, would eliminate all
funding for LIHEAP beginning in fiscal year 2020. The practical result
would be that millions of low income families would not be able to
afford their home energy bills and would face having to choose between
heating and cooling their homes and the purchase of other vital
necessities including food and medicine.
The Administration's position is based on two points: the first is
that the program should be eliminated because of a nine-year old GAO
study that reported isolated cases of fraud and the second is that
States have enacted shut-off provisions during winter heating and
summer cooling cycles.
The State LIHEAP directors strongly disagree with both of the
Administration's positions and urge the members of the Subcommittee to
reject the Administration's proposal. First, the States have been
working in partnership with the Administration for Children and
Families (ACF) to implement a comprehensive performance measures
program. As part of this program, States submit an annual report
containing data on targeting households that pay the highest energy
costs in proportion to their income, restoring energy services to
families that have been shut-off due to lack of payment, and preventing
loss of energy services.
Second, replacing LIHEAP with a patchwork of State, local, and
utility assistance would take us back to the days when many poor
families used their stoves to heat their homes and suffered the shut-
off of energy services when they were unable to pay the bill. Without
LIHEAP, energy assistance is unreliable, especially during periods of
price spikes due to global events or extreme weather that make home
energy unaffordable. State, local, and utility programs are not a
substitute for LIHEAP, rather they provide supplementary assistance.
In addition, shut-off protections do not eliminate the necessity of
a poor family paying their energy bill--they simply delay the due date.
Thefamily will still be responsible for the full bill once the shut-off
moratorium expires. And for those families using unregulated delivered
fuels--heating oil and propane--there are no shut-off protections.
funding is sufficient to serve only a fraction of the eligible
population
LIHEAP is the primary source of heating and cooling assistance for
some of the poorest families in the United States. In fiscal year 2019,
the number of households receiving heating and cooling assistance is
expected to remain at about 5.9 million or about 19 percent of eligible
households, with an average annual grant size of about $513. In
addition, 70 percent of recipient households have at least one
vulnerable and at-risk member who is elderly or disabled, or have a
child under the age of six.
energy prices and their impact on low income households
Energy prices fall hardest on lower income households. The average
energy burden for low-income households was 10 percent of income,
almost four times more than the rate for non-low income households (2.4
percent). Of even greater concern about one-third of lower income
households have energy burdens greater than 15 percent of income and
one in six have an energy burden greater than 25 percent of income.
Source: fiscal year 2014 Home Energy Notebook, Administration for
Children and Families.
how liheap helps families
In December NEADA completed a survey of LIHEAP recipients, the 2018
National Energy Assistance Survey, Final Report (http://neada.org/
program-policy-reports/liheapsurvey/). The survey asked recent LIHEAP
recipients in seven States selected for national representation how
they fared prior to receiving LIHEAP grants. Of 634 respondents:
--37 percent had closed off part of their home to save utility costs
--25 percent kept the temperature inside unsafe or unhealthy
--52 percent of households have a disabled member, many of whom rely
on electricity for breathing machines or to refrigerate
medicines
--17 percent had to move in with friends or family and 6 percent
went into shelters.
The study further found that the poor are hit hard by energy bills,
which take about 12 percent out of a low-income paycheck, but only 2.7
percent from households with higher wages. In winter the heating bill
can cost a low-income family 25 percent of its income. Only 26 percent
of LIHEAP respondents reported being unemployed part of a year, yet in
order to try to meet their utility costs:
--36 percent went without food for at least a day
--41 percent went without medical or dental care
--31 percent did not fill a prescription or took less than a
prescribed dose to stretch their supply.
These responses from LIHEAP recipients underline the agonizing
choices faced by low-income households that struggle to pay their
utility bills. In 2015 the U.S. Energy Administration reported that
nearly one third of all American households struggle to pay energy
bills, with 25 million foregoing food and medicine to pay for
utilities, and 7 million households facing that decision every month.
playing a crucial role in maintaining family stability and positive
health outcomes
LIHEAP's impact in many cases goes beyond providing bill payment
assistance by playing a crucial role in maintaining family stability
and improving health outcomes for vulnerable populations. It enables
elderly citizens to live independently and ensures that young children
have safe, warm homes to live in. Although the circumstances that lead
each client to seek LIHEAP assistance are different, LIHEAP links these
stories by enabling people to cope with difficult circumstances with
dignity.
The following are several examples of households receiving LIHEAP
assistance and how LIHEAP helped the families stay connected to
essential energy services:
California.--A young mother of three lived in an older all-electric
home and had their electricity shut off due to a past-due bill of about
$800. She worked full time making minimum wage and her husband worked
as a seasonal laborer. With no electricity, the family could not heat
their home, access hot water, or operate appliances. LIHEAP was able to
assist the family by paying their past due bill to get the electricity
turned back on. She was also referred to the County's Weatherization
Program, which assists families in making their homes more energy
efficient.
Connecticut.--A single mother of two facing the challenges of being
homeless came to the State for help. Through Connecticut's connected
services, she received a housing subsidy, $505 in LIHEAP funds, and was
enrolled in the utility company's Matching Payment Program.
Colorado.--A mother of three is raising her children on her own
because her husband had a stroke and is now confined to a care
facility. Her car was repossessed so she was no longer able to report
to work and lost her job. She received a shutoff notice for her heat
and could not allow her children to suffer in the cold. She reached out
to the State LIHEAP Office and was able to obtain the assistance she
needed to get her heat bill back on track.
An elderly woman's furnace stopped working around Thanksgiving. She
had no spare money to repair or replace it. She reached out to the
State LIHEAP Office. Her application was approved, making her eligible
for the Crisis Intervention Program. Her furnace was repaired and in
working order within one day of being approved for LIHEAP.
A man is caring for his elderly mother. Her furnace broke and she
had been heating her home with her oven. Neither the man nor the woman
could afford a new furnace, so the man helped his mother apply for
LIHEAP. Her new furnace was installed within days.
District of Columbia.--A 79-year-old lifelong DC resident nearly
gave up her home in the historic Anacostia neighborhood when her gas
service was disconnected. She received LIHEAP assistance from the DC
Department of Energy and Environment (DOEE), as well as an ongoing
utility bill discount, a new heating system, and had a major leak in
the basement fixed through pro bono work offered by a local company in
partnership with a nonprofit organization.
Florida.--A father with two children was working to manage his
wife's medical care and the household needs. After his wife died, he
left work to take care of his daughters, one of whom suffers from
epilepsy. He fell behind on his electric bill and was in danger of
being disconnected. LIHEAP funds helped keep the power on and pay down
his overdue balance.
Georgia.--A 77-year-old disabled senior living on Social Security
was facing shut-off due to unaffordable winter energy bills. She had to
maintain a consistent home temperature due to her frail health. Her gas
bill was in danger of disconnection with a balance of $612 and an
additional past due portion of $355. She found she was eligible for
both the LIHEAP maximum benefit of $350 and Home Energy Assistance Team
program funds of $350, allowing her to bring her home heating bill
current so she could heat her home through the rest of the winter.
Illinois.--A 58-year-old terminally ill man was facing electricity
shutoff due to a large past-due electric account balance that he could
not pay after he covered his rent and medical bills. He did not think
he was eligible for LIHEAP because he received a benefit earlier in the
year. He applied for the LIHEAP crisis assistance benefit, and LIHEAP
assisted him the same day.
Indiana.--A retired police officer known in the community for
helping those less fortunate than himself had been using space heaters
to heat his home since his furnace had stopped working 2 years prior.
The space heaters were not keeping the home at a comfortable
temperature. His son encouraged him to apply for LIHEAP for help. In
addition to receiving a LIHEAP benefit, the retired officer received a
new furnace using LIHEAP funds.
Minnesota.--An older man, living alone with a disability in rural
Minnesota came into the local LIHEAP office. He broke down in tears as
he explained that he had always been self-sufficient, but that he now
has ALS and reluctantly is seeking help to pay his heating bill. With
his medical bills and medication costs, he struggled to keep up and was
facing having his heat shut off. In Minnesota, heat is a basic
necessity. LIHEAP assistance helped him stay safe and in his home.
An elderly couple in northern Minnesota was assisted by LIHEAP to
help pay their heating bill. The LIHEAP assistance allowed them to use
their limited funds to pay for other things essential to their health
and safety, including prescription medication and food.
Oklahoma.--A young single woman with medical issues was working
part time as a cashier and taking care of her elderly grandmother. She
was able to use LIHEAP to maintain service while she was between jobs,
preventing her and her mother from entering a shelter. She was also
able to use LIHEAP emergency assistance to prevent disconnect of her
electricity when her new salary was not enough to cover the bill.
NEADA strongly urges the Congress to reject the Administration's
proposal and instead increase funding to at least $4.7 billion for this
vital program to ensure the country's most vulnerable families can heat
and cool their homes in the coming year. We appreciate the opportunity
to submit testimony on behalf of the State directors of the Low-Income
Home Energy Assistance Program.
[This statement was submitted by Mark Wolfe, Executive Director,
National
Energy Assistance Directors' Association.]
______
Prepared Statement of the National Family Planning & Reproductive
Health Association
Chairman Blunt, Ranking Member Murray, and Subcommittee Members:
Thank you for this opportunity to provide testimony in support of
increased Title X funding in the fiscal year 2020 appropriations bill.
I am deeply concerned by the administration's continued attacks on the
integrity of the Title X program, as demonstrated by the devastating
rule published by the administration on March 4,\1\ and by the
continued underfunding of the Nation's only Federal program dedicated
to family planning and sexual health services for people who are low-
income, uninsured, or underinsured. I urge the Senate to provide strong
support for Title X's high-quality, evidence-based, and patient-
centered care by adopting the House's appropriation of $400 million and
language protecting the program's integrity in the fiscal year 2020
Labor, Health and Human Services, Education, and Related Agencies
appropriations bill.
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\1\ Department of Health and Human Services. Final Rule.
``Compliance with Statutory Program Integrity Requirements.'' Federal
Register 84 (March 4, 2019): 7714-7791.
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The National Family Planning & Reproductive Health Association
(NFPRHA) is a non-partisan 501(c)3 membership association that advances
and elevates the importance of family planning in the Nation's
healthcare system and promotes and supports the work of family planning
providers and administrators, especially in the safety net.
Representing more than 850 members that operate or fund more than 3,500
health centers in the United States, NFPRHA conducts and participates
in research; provides educational subject matter expertise to policy
makers, healthcare providers, and the public; and offers its members
capacity-building support aimed at maximizing their effectiveness and
financial sustainability as providers of essential healthcare. NFPRHA
represents more than 70 percent of Title X grantees and more than 90
percent of Title X service sites.
Title X helps more than four million people access family planning
and related health services at nearly 4,000 health centers around the
country annually.\2\ Title X-funded health centers include a diverse
array of providers, such as State and local health departments,
freestanding family planning centers, Planned Parenthood affiliates,
federally qualified health centers, hospitals, school- and university-
based health centers, a diversity that allows patients to seek care at
the site that works best for them.
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\2\ Christina Fowler et al, ``Family Planning Annual Report: 2017
National Summary,'' RTI International (August 2018). https://
www.hhs.gov/opa/sites/default/files/title-x-fpar-2017-national-
summary.pdf.
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For many individuals, particularly those who have low incomes, are
under- or uninsured, or are adolescents, Title X-supported sites are
their main access point to affordably and confidentially obtain
contraception, cancer screenings, sexually transmitted disease testing
and treatment, complete and medically accurate information about their
sexual health and family planning options, and other basic care. In
fact, a 2017 study found six in ten women seeking contraceptive
services at a Title X health center saw no other healthcare providers
that year.\3\ In addition to that direct clinical care, Title X
supports important health center efforts that are not reimbursable
under Medicaid or private insurance, including critical staff training
and community-based sexual and reproductive health education programs.
---------------------------------------------------------------------------
\3\ Mia Zolna, Megan Kavanaugh, and Kinsey Hasstedt. ``Insurance-
Related Practices at Title X-Funded Family Planning Centers under the
Affordable Care Act: Survey and Interview Findings.'' Guttmacher
Institute (November 2017). https://www.guttmacher.org/article/2017/11/
insurance-related-practices-title-x-funded-family-planning-centers-
under-affordable.
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Despite this compelling data, and in spite of the critical
importance of equitable access to family planning services for all
people, Title X has remained woefully underfunded at just over $286
million for the past 6 years. In 2016, researchers from the Centers for
Disease Control and Prevention, the Office of Population Affairs, and
George Washington University estimated that Title X would need $737
million annually to deliver family planning care to all uninsured, low-
income women in the United States.\4\ This estimate understates the
true need for Title X, as it does not include an estimate of costs for
men (who made up 12 percent of patients in the network in 2017 \5\),
does not account for Title X's trans and nonbinary patients, and does
not include an estimate for the insured patients who rely on Title X's
confidentiality protections.
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\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.
\5\ Christina Fowler et al, ``Family Planning Annual Report: 2017
National Summary,'' RTI International (August 2018). https://
www.hhs.gov/opa/sites/default/files/title-x-fpar-2017-national-
summary.pdf.
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The gap between the funds appropriated and the funds needed has
only grown in recent years. From 2010 to 2014 the number of women who
needed publicly funded family planning services increased by one
million,\6\ but Congress cut Title X's funding by $31 million over that
period. That decrease unfortunately corresponds to dramatic decreases
in the number of patients served at Title X-funded sites; the numbers
dropped from 5.22 million in 2010 \7\ to just over four million in
2017.\8\
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\6\ Jennifer Frost, Lori Frohwirth and Mia Zolna, ``Contraceptive
Needs and Services, 2014 Update,'' Guttmacher Institute (September
2016). https://www.guttmacher.org/report/contraceptive-needs-and-
services-2014-update.
\7\ Christina Fowler et al, ``Family Planning Annual Report: 2017
National Summary,'' RTI International (August 2018). https://
www.hhs.gov/opa/sites/default/files/title-x-fpar-2017-national-
summary.pdf.
\8\ Fowler et al, ``Family Planning Annual Report: 2016 National
Summary.''
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In April, the House Appropriations Committee recognized these
challenges and adopted NFPRHA's recommendations to strengthen the Title
X program by including an appropriation of $400 million and new
language to block the harmful Title X rule finalized in March and
restore the full regulatory framework for Title X to its 2016 status.
NFPRHA urges you to adopt these critical provisions in your bill and
maintain existing requirements that support the program's ability to
fulfill Congress' vision for this essential public health program.
These funding and language requests come in the wake of a final
rule from the administration that is unlawful, coercive, and dangerous
for patients' health. On March 4, the administration published a final
rule \9\ that disregards medical ethics and Federal guidelines in order
to severely restrict the providers in the Title X network and the care
that patients can receive from those remaining in the program. Federal
judges in Washington, Oregon, and California responded swiftly to the
potential illegality of the new rules by issuing injunctions against
the rule in April 2019.\10\ While these cases work their way through
the court system, I urge you to use your power to block the rules
through the appropriations bill.
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\9\ Department of Health and Human Services. Final Rule.
``Compliance with Statutory Program Integrity Requirements.'' Federal
Register 84 (March 4, 2019): 7714-7791.
\10\ See State of Washington v. Alex M. Azar II., No. 1:19-cv-
03040-SAB (E.D. Wash. Apr. 25, 2019), American Medical Ass'n et al. v.
Alex M. Azar II, et al., No. 6:19-cv-00317-MC (D. Or. Apr. 29, 2019),
Essential Access Health, Inc. et al. v. Alex M. Azar, et al., No. 19-
cv-01195-EMC (N.D. Cal. Apr. 26, 2019).
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Thousands of providers and millions of patients are counting on
Congress to stand strong against attacks on family planning and support
increased public funding for the Title X program. I look forward to
working with committee members in those efforts.
If you have questions about this testimony, please contact my
colleague Lauren Weiss, Director, Advocacy & Communications, at
[email protected].
[This statement was submitted by Clare Coleman, President & CEO,
National Family Planning & Reproductive Health Association.]
______
Prepared Statement of the National Firefighter Cancer Registry
Dear Chairman Blunt and Ranking Member Murray,
On behalf of the Nation's fire and emergency services, we write to
urge your support for a vital program addressing the health and safety
of our Nation's firefighters. As you consider the fiscal year 2020
Labor, Health and Human Services, Education, and Related Agencies
Appropriations bill, we urge you to fully fund the Firefighter Cancer
Registry at the authorized level of $2.5 million.
During the 115th Congress, both the House and Senate unanimously
approved the Firefighter Cancer Registry Act (Public Law 115-194). The
bipartisan legislation created a specialized national registry to
provide researchers and epidemiologists with the tools and resources
needed to improve research collection activities related to the
monitoring of cancer incidence among firefighters.
Studies have indicated a strong link between firefighting and an
increased risk of several major cancers. However, certain studies
examining cancer risks among firefighters have been limited by the
availability of important data and relatively small sample sizes that
have an underrepresentation of women, minorities, and volunteer
firefighters. As a result, public health researchers are unable to
fully examine and understand the broader epidemiological cancer trends
among firefighters. The Firefighter Cancer 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
______
Prepared Statement of the National Indian Child Welfare Association
The National Indian Child Welfare Association (NICWA), located in
Portland, Oregon, has over 35 years of policy experience advocating on
behalf of American Indian and Alaska Native (AI/AN) children in child
welfare and children's mental health systems. Thank you for the
opportunity to provide fiscal year 2020 budget recommendations for
child welfare and children's mental health programs administered by the
Department of Health and Human Services (DHHS). Our full
recommendations appear in the charts below with our priority
recommendations described in more detail underneath the charts.
priority recommendations
Promoting Safe and Stable Families recommendation (Title IV-B,
Subpart 2-Discretionary Portion).--Increase discretionary funding under
this program to $70 million (not including Kinship Navigator and
Regional Partnerhip grants at $40 million) to provide additional access
to tribes who are currently not eligible to apply for these funds based
upon the current eligibility criteria that are tied to the funding
formula, and increase tribal court improvement funding to $3 million.
The Promoting Safe and Stable Families Program provides funds to
tribes for coordinated child welfare services that include family
preservation, family support, family reunification, and adoption
support services. This program has a mandatory capped entitlement
appropriation as well as a discretionary appropriation. There is a 3
percent set-aside for tribes under each program. All tribes with
approved plans are eligible for a portion of the set-aside that is
equal to the proportion of their member children compared to the total
number of member children for all tribes with approved plans. Based on
this formula, tribes who would qualify for less than $10,000 are not
eligible to receive any funding. This means that many tribes, typically
those tribes that are most in need, cannot access it because the
overall appropriation is currently too low. Out of the 573 federally
recognized tribes, over 100 tribes have no access to these funds.
Tribal systems endeavor to reduce out-of-home placements whenever
possible, saving children and their families additional trauma and
helping Sstates with services to Native families under their
jurisdiction. Native children in State child welfare systems are three
times more likely to be removed from their homess--as opposed to
receiving family preservation services--than their non-Native
counterparts.\3\ Tribes are providing intensive family preservation and
family reunification services in spite of inadequate funding and
insufficient staffing, which is putting incredible strain on individual
workers and programs.\4\ New prevention services funding under Title
IV-E will help a small portion of tribes, typically those that already
receive Promoting Safe and Stable Funding, but many smaller tribes do
not have access to Title IV-E and rely on these kinds of funds to
reduce out of home placements and stabilize families.
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\3\ Hill, R. B. (2008). An analysis of racial/ethnic
disproportionality and disparity at the national, State, and county
levels (p. 9). Seattle, WA: Casey Family Programs, Casey-CSSP Alliance
for Racial Equity in Child Welfare, Race Matters Consortium Westat.
\4\ National Child Welfare Resource Center for Tribes. (2011).
Findings from the national needs assessment of American Indian/Alaska
Native child welfare programs (p. 23). Retrieved from nrc4tribes.org/
files/NRCT%20Needs%20Assessment%20Findings_APPROVED.pdf.
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The Promoting Safe and Stable Families Program offers support for
culturally based services that tribes already have experience with,
such as parenting classes, home visiting services, and respite care for
caregivers of children. This program is vital to the tribes that depend
on it to support efforts to prevent the unnecessary removal of AI/AN
children from their homes.
Tribes are also eligible to apply for the Tribal Court Improvement
Program, a competitive grant program authorized under Promoting Safe
and Stable Families. This program is authorized for $30 million of
mandatory funding plus 3.3 percent of all discretionary funds. A $1
million tribal set-aside was created in the 2011 Child and Family
Services Improvement and Innovation Act, Public Law No. 112-34 (2011).
Seven tribal court improvement project grantees are currently funded
under this program. They are using these funds to strengthen their
family courts and better integrate the work of their courts with their
child welfare systems and with their State court partners who serve
Native children and families under their jurisdiction.
Community-Based Child Abuse Prevention grants: Increase overall
appropriations to $50 million to increase funding available under the
tribal set-aside for additional tribal grants.
Community-Based Child Abuse Prevention grants provide funding for
primary and secondary child abuse prevention activities. The funds are
often used to support community-wide child abuse prevention campaigns,
provide education on how to lower risk of child abuse and neglect, and
connect families with supportive services to keep children safe. These
funds can also be key to reducing foster care placement rates and
supporting tribes in their role as partners to States who may have AI/
AN children in their care.
While many tribes are interested in developing culturally-based
child abuse and neglect prevention efforts, tribes share a 1 percent
set-aside under the grant program with migrant populations which funds
between 2-3 tribal grants each three-year grant cycle. This limited
funding has severely hampered the building of a critical knowledge base
and successful programming in Indian Country.
An accurate understanding of successful child abuse and neglect
interventions for American Indian and Alaska Native families allows
child abuse prevention programs to target the correct issues, provide
the most effective services, and allocate resources wisely. Although
promising practices for child protection, child abuse prevention, and
trauma-informed child welfare services exist throughout Indian Country,
not enough information is available on the implementation and
effectiveness of these programs to make them easily replicable.\5\
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\5\ U.S. Department of Justice, Office of Justice Programs, Office
of Juvenile Justice and Delinquency Prevention. (2014). Attorney
General's Advisory Committee on American Indian/Alaska Native Children
Exposed to Violence: Ending violence so children can thrive (p. 81).
Retrieved from www.justice.gov/sites/default/files/defendingchildhood/
pages/attachments/2014/11/18/finalaianreport.pdf.
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Increasing tribal funding under this program is the surest way to
increase effective responses to child abuse and neglect in tribal
communities.
Programs of Regional and National Significance, Children and Family
Programs (includes Circles of Care).--Ensure that $6.5 million under
this line item continues to be reserved specifically for the tribal and
urban Indian community Circles of Care program in fiscal year 2020.
The Children and Family Programs under Programs of Regional and
National represents funds allocated to support the tribal Circles of
Care program. Circles of Care is a competitive grant program
exclusively for tribal communities. It is the cornerstone of tribal
children's mental health programming.
Circles of Care is a three-year planning grant that helps
communities design programs to specifically serve AI/AN children with
serious behavioral health issues. Specifically, Circles of Care funds
the development of the tribal capacity and infrastructure necessary to
support a coordinated network of holistic, community-based, mental and
behavioral health interventions in tribal communities.
Circles of Care is one of only two SAMHSA programs that allow
tribes and tribal organizations to apply for funding without competing
with other governmental entities (States, counties, or cities). There
are currently 11 communities receiving Circles of Care funding.
AI/AN children and youth face a ``disproportionate burden'' of
mental health issues while simultaneously facing more barriers to
quality mental healthcare.\6\ Since its inception in 1998, the Circles
of Care program has affected 49 different tribal and urban Indian
communities. These programs have been incredibly successful. The
majority of tribes who have received these grants have created long-
term, sustainable systems of care for their children.
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\6\ American Psychiatric Association. (2010). Mental health
disparities factsheet: American Indians and Alaska Natives (p. 4).
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Of the 31 total graduated Circles of Care grantees, 12 have
obtained direct funding to implement their system change efforts
through System of Care (SOC) grants, and four others have partnered
with other SOC grantees to implement their models. The others have
developed various alternative strategies to operationalize and sustain
their system change plans to care for youth with mental health
challenges.
Children's Mental Health Initiative (Systems of Care).--Continue
funding at $125 million to allow for continued support of the current
four-year grantees and funding of new grantees in fiscal year 2020. We
are asking for Congress to specify that these funds must be used for
System of Care grants for States and tribes.
The children's mental health initiative supports the development of
comprehensive, community-based ``systems of care'' for children and
youth with serious emotional disorders. This includes funding for 1
year System of Care Expansion Planning Grants, four-year System of Care
Expansion Implementation Grants, and six-year Children's Mental Health
Initiative System of Care Grants. AI/AN communities are eligible for,
and recipients of, each of these grants, but must compete with non-
tribal applicants to receive these funds.
Children's Mental Health Initiative System of Care Grants support a
community's efforts to further plan and implement strategic approaches
to mental health services. These approaches are based on important
principles: they must be family-driven; youth-guided; and meet the
intellectual, emotional, cultural, and social needs of children and
youth. Since 1993, 180 total projects have been funded, dozens of which
have been in tribal communities. Currently, 12 tribal communities are
funded.
Evaluation studies of System of Care have indicated return on
investment from cost-savings in reduced use of in-patient psychiatric
care, emergency room care, and residential treatment even when other
community- or home-based care is provided. There are also cost savings
from decreased involvement in juvenile justice systems, fewer school
failures, and improved family stability.\7\
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\7\ Stroul, B. (2015). Return on investment on System of Care for
children with behavioral health challenges: A look at wraparound. The
TA Telescope, 1(2), pp. 1-2.
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Programs of Regional and National Significance, Tribal Behavioral
Health Program.--Increase funding for the Tribal Behavioral Health
program (mental health and substance abuse prevention programs) to $50
million in fiscal year 2020.
In the fiscal year 2019, the Tribal Behavioral Health Grants were
funded at $20 million ($20 million in the Mental Health appropriation
and $20 million in the Substance Abuse Prevention appropriation). NICWA
recommends $50 million in fiscal year 2020 to continue to address the
expansion of suicide prevention, mental health, and substance abuse
activities for Native communities.
These are competitive grants designed to target tribal entities
with the highest rates of suicide per capita over the last 10 years.
These funds must be used for effective and promising strategies to
address the problems of substance abuse and suicide and promote mental
health among AI/AN young people.
AI/AN young people are more likely than other youth to have an
alcohol use disorder. In 2007, 8.5 percent of all AI/AN youth struggled
with alcohol use disorders compared to 5.8 percent of the general youth
population.\8\ Although these statistics are troubling, with adequate
resources tribes are best able to serve these young people and help
them heal before they reach adulthood:
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\8\ U.S. Department of Justice, Office of Justice Programs, Office
of Juvenile Justice and Delinquency Prevention. (2014). Attorney
General's Advisory Committee on American Indian/Alaska Native Children
Exposed to Violence: Ending violence so children can thrive (p. 81).
Retrieved from www.justice.gov/sites/default/files/defendingchildhood/
pages/attachments/2014/11/18/finalaianreport.pdf.
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There is growing evidence that Native youth who are culturally and
spiritually engaged are more resilient than their peers. Research has
revealed that 34 percent of Native adolescents preferred to seek mental
or substance abuse services from a cultural- or religious-oriented
service provider. In other research, American Indian caregivers
preferred cultural treatments (e.g., sweat lodge, prayer) for their
children and found the traditionally based ceremonies more effective
than standard or typical behavioral health treatment.\9\
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\9\ Novins, D. K., & Bess, G. (2011). 10. Systems of mental
healthcare for American Indian and Alaska Native children and
adolescents. In P. Spicer, P. Farrell, M. C. Sarche, & H. E. Fitzgerald
(Eds.), American Indian and Alaska Native children and mental health:
Development, context, prevention, and treatment. Santa Barbara, CA:
SABC-CLIO, LLC.
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______
Prepared Statement of the National Indian Health Board
Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee, thank you for the opportunity to offer this testimony. On
behalf of the National Indian Health Board (NIHB) and the 573 Tribal
Nations we serve, I submit this testimony for the record on the fiscal
year 2020 budget for the Department of Health and Human Services (HHS).
Since the earliest days of the Republic, all branches of the
Federal Government have acknowledged the Nation's constitutional
obligations to Tribal Nations and the special trust relationship
between the United States Government and Tribal Governments. This duty
was reaffirmed in 2010 with the permanent reauthorization of the Indian
Healthcare Improvement Act, in which Congress declared ``... it is the
policy of this Nation, in fulfillment of its special trust
responsibilities and legal obligations to Indians--to ensure the
highest possible health status for Indians and urban Indians and to
provide for all resources necessary to effect that policy.'' \1\
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\1\ 25 U.S.C. 1602.
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Congress again affirmed this special relationship with Tribes in
the fiscal year 2019 Labor, Health and Human Services, Education, and
Related Agencies (Labor-HHS) Committee Report when it stated,
``...Indian Tribes are political, sovereign entities to which the
Federal Government owes a trust responsibility. Congress has routinely
codified this relationship, most notably in the provision of healthcare
by establishing a health system for Tribal populations exclusively.''
\2\ The Indian Health Service (IHS) was established in part to fulfill
the Federal Government's trust responsibility for health; however, IHS
has never been fully funded at the level of need. For example, in
fiscal year 2017, IHS per capita expenditures for medical care amounted
to just $4,078, compared to $9,726 nationally.\3\ While full funding
for IHS remains a top priority for Tribal Nations, fulfilling the
Federal trust responsibility for health is the obligation of every
Federal agency--not just IHS.
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\2\ fiscal year 2019 House Labor-HHS Committee Report.
\3\ National Tribal Budget Formulation Workgroup's Recommendations
on the Indian Health Service fiscal year 2021 Budget.
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NIHB would first like to thank the Committee for increasing funding
for Tribes and Tribal organizations within the fiscal year 2019 Labor-
HHS Appropriations Act. These included a $50 million set aside for
Tribal Opioid Response (TOR) grants; $21 million for Good Health and
Wellness in Indian Country (GHWIC); and $40 million for Tribal
Behavioral Health Grants.
Nevertheless, much more work needs to be done. Tribal health
systems are often left out of larger public health and behavioral
health grants and block grants that flow to States. While Tribes are
eligible to apply for these grants, many have little penetration into
Indian Country because Tribes have difficulty meeting the service
population requirements, match requirements, or are under-resourced to
apply. Instead, funding should flow to Tribes directly on a recurring,
formula basis, so that Tribes can count on funding from year to year.
Direct funding to Tribes and Tribal organizations honors the Federal
trust responsibility and the inherent sovereignty of Tribal Nations,
and ensures that Tribes have the necessary resources to improve the
health and wellness of their Peoples.
centers for disease control and prevention
Preventive Health and Health Services Block Grant (PHHSBG): Tribal
public health infrastructure and capacity is significantly lower than
that of States and counties, because Tribes were left behind during the
Nation's development of its public health infrastructure. As a result,
Tribal health systems generally lack the capacity to conduct robust
disease surveillance and tracking, engage in preparedness and disaster
relief efforts, and provide comprehensive preventive health services.
The fiscal year 2020 President's Budget proposes total elimination of
PHHSBG. While only two Tribes receive a small portion of these funds,
it is vital that this program be maintained and its reach in Indian
Country expanded. NIHB requests that, in fiscal year 2020, Congress
maintain PHHSBG funding at $160 million and provide a direct, annual
set aside of 5 percent for Tribes and Tribal organizations.
Good Health and Wellness in Indian Country (GHWIC): The GHWIC
program is CDC's single largest investment in Indian Country. The
program funds a total of 35 Tribes and Tribal organizations to improve
chronic disease prevention efforts, expand physical activity, and
reduce commercial tobacco use. NIHB is thankful to the Committee for
including a $5 million increase to GHWIC for fiscal year 2019. However,
the fiscal year 2020 President's Budget proposes elimination of this
program. NIHB requests that the Committee reject elimination of GHWIC
and increase funding to $32 million for fiscal year 2020.
Funding for HIV, Viral Hepatitis, and Sexually Transmitted
Infections: Tribal communities are disproportionately impacted by HIV,
viral hepatitis, and sexually transmitted infections (STIs). According
to the CDC, rates of new HIV infections increased by 81 percent among
gay and bisexual AI/AN men from 2010 to 2016,\4\ while AI/ANs continue
to have the highest Hepatitis C mortality rates nationwide at 10.8
deaths per 100,000 in 2016.\5\ Furthermore, gonorrhea rates among AI/
ANs are 4.5 times higher than for Whites, while rates of chlamydia and
syphilis are 2.7 and 2.1 times higher respectively.\6\ Nevertheless, in
fiscal year 2018, no Tribe or Tribal organization received STI or viral
hepatitis prevention grants from CDC, and only two community-based
organizations serving AI/ANs received HIV dollars. The fiscal year 2020
Budget Request includes a new $140 million investment in CDC to further
the President's announcement of ending the HIV epidemic by 2030. NIHB
requests that the Committee provide direct 5 percent set asides in HIV,
viral hepatitis, and STI funding for Tribes and Tribal organizations.
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\4\ CDC. (2019). HIV and American Indians and Alaska Natives.
Retrieved from https://www.cdc.gov/hiv/pdf/group/racialethnic/aian/cdc-
hiv-aian-fact-sheet.pdf.
\5\ CDC. Surveillance for Viral Hepatitis: United States, 2016.
Retrieved from https://www.cdc.gov/hepatitis/statistics/
2016surveillance/commentary.htm.
\6\ CDC. Sexually Transmitted Disease Surveillance, 2017. Retrieved
from https://www.cdc.gov/std/stats17/natoverview.htm.
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substance abuse and mental health services administration
Substance Abuse Prevention and Treatment Block Grant (SABG): The
SABG is one of two major block grants administered by SAMHSA, the other
being the Community Mental Health Services Block Grant (MHBG). Tribes
are not eligible to receive MHBG grants, which contributes to the
dearth of mental health services available within Tribal communities.
While all 50 States, the District of Columbia, and eight U.S.
territories receive SABG funding, only 1 Tribe is included. Increasing
Tribal access to SABG is critical towards building Tribal behavioral
health capacity and reducing Tribal behavioral and mental health
disparities. NIHB requests that the Committee set aside SABG funding
for Tribes and Tribal organizations and work with authorizing
committees to extend eligibility for MHBG funding to Tribes.
Tribal Behavioral Health Grants: NIHB was pleased to see both the
mental health and substance abuse TBHGs increased to $20 million each
for fiscal year 2019 ($40 million total). These two Tribally-focused
programs have created over 140 unique projects in Indian Country
addressing a wide variety of mental and behavioral health needs, and
have helped many Tribes address chronic shortages in mental and
behavioral health services. NIHB requests that the Committee double
funding for the TBHG program to $80 million total, and that SAMHSA
engage in Tribal consultation on restructuring the program to be
formula-based with the option for Tribes to apply for funding under 638
self-governance authority.
Opioid Funding: NIHB was pleased to see a $50 million set aside for
TOR grants and a $10 million set aside for medication-assisted
treatment in fiscal year 2019. With AI/ANs experiencing the second
highest overall opioid overdose rates, dedicated funding to Tribes for
prevention and treatment is essential. In fiscal year 2018, 134 Tribes
and Tribal organizations received TOR grant funding. NIHB requests that
the Committee double the Tribal opioid funding set aside to 10 percent
so that more Tribes can participate and existing grantees can expand
the scope and delivery of services.
HIV and Minority AIDS Initiative Funding: Unlike Federal agencies
such as SAMHSA and CDC, the IHS has historically not received direct
appropriations under the Minority AIDS Initiative. Without direct
funding, IHS, Tribal and urban Indian facilities (collectively I/T/U)
have been forced to cobble together resources from disparate sources to
provide HIV prevention services. Lack of direct resources for
prevention have likely contributed to a 46 percent increase in HIV
diagnoses among AI/ANs overall from 2010 to 2016. NIHB requests that
the Committee enact a 5 percent Tribal set aside for Minority AIDS
Initiative dollars under mental health, substance abuse prevention, and
substance abuse treatment.
health resources and services administration
Health Workforce: As reported by IHS in its fiscal year 2020
Congressional Justification, the Indian health system currently has
1,330 vacancies for healthcare professionals including physicians,
nurse practitioners, dentists, pharmacists, and physician
assistants.\7\ In fact, in a 2018 report released by the Government
Accountability Office (GAO), provider vacancy rates across eight IHS
Areas with substantial direct care responsibilities reached as high as
31 percent (GAO-18-580).\8\ Without sufficient access to providers, the
quality and accessibility of care in the Indian health system will not
improve, and the health status of AI/ANs will remain lower than the
general population. The fiscal year 2020 President's Budget proposed
cutting funding for the National Health Service Corps (NHSC) by $15
million. Any cuts to NHSC funding would devastate the Indian health
system, as I/T/U facilities retain the largest share of NHSC
placements. NIHB requests that the Committee maintain its $15 million
set aside in NHSC funding for placements within the Indian health
system.
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\7\ fiscal year 2020 Justification of Estimates for Appropriations
Committees: Indian Health Service.
\8\ Government Accountability Office. (2018). Indian Health
Service: Agency Faces Ongoing Challenges Filling Provider Vacancies.
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Health Centers: In addition to chronic provider shortages, the
average age of I/T/U facilities is roughly 40 years, compared to an
average age of roughly 10 years for health facilities nationwide.\9\ In
fact, research shows that an IHS facility built today would not be
replaced for 400 years in the current budget environment.\10\ IHS and
Tribal health systems generally lack access to specialty care
facilities, preventive health centers, behavioral and mental health
clinics, and so forth. Despite the need, only 1.1 percent of patients
served by HRSA's health center program were AI/AN in 2017. Direct
access to health center funding can help improve Tribal health
infrastructure by expanding funding for health services. As such, NIHB
requests that the Committee enact a 3-4 percent set aside in Health
Center funding for the I/T/U system.
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\9\ The 2016 Indian Health Service and Tribal Health Facilities'
Needs Assessment Report to Congress. Retrieved from https://
www.ihs.gov/newsroom/includes/themes/responsive2017/display_objects/
documents/RepCong_2016/IHSRTC_on_FacilitiesNeedsAssessmentReport.pdf.
\10\ Ibid.
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Action for Dental Health Program: Nationwide, Tribal communities
struggle with dental afflictions and disparities, as well as a severe
oral health provider shortage. On average, Indian Country has just 1
dentist for every 2,800 people, which is half the number of dentists
per capita nationwide. This shortage contributes to poorer oral health
outcomes across all age groups in Tribal communities. In fact, 41
percent of AI/AN 2-5 year olds and 46 percent of AI/AN adults over the
age of 65 have untreated tooth decay, compared to 10 percent and 19
percent of non-Natives in the same age groups.\11\ As one of the many
policy solutions to restore Indian Country's oral health, NIHB supports
funding for the Action for Dental Health Program (42 U.S.C. 280k(c)),
which includes direct funding to Tribes. NIHB recommends the Committee
appropriate such sums as may be necessary--including a designated
funding set aside for Tribes--for the implementation of the Action for
Dental Health Program in fiscal year 2020.
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\11\ Phipps and Ricks, April 2015; Bruce A. Dye, Gina Thornton-
Evans, Xianfen Li, and Timothy J. Iafolla, NCHS Data Brief No. 191,
``Dental Caries Sealant Prevalence in Children and Adolescents in the
United States, 2011-2012,'' March 2015, http://www.cdc. gov/nchs/data/
databriefs/db191.pdf.
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Centers for Medicare and Medicaid Services: The Medicaid system is
a critical lifeline in Tribal communities, accounting for roughly 13
percent of the overall IHS budget. Moving Medicaid to a block grant
system, as proposed in the fiscal year 2020 President's Budget, would
have major fiscal impacts on Tribal health reimbursements. We also urge
Congress to ensure that AI/ANs are exempt from any mandatory work
requirements under Medicaid, as they would impose additional and
unmanageable burdens on an IHS budget that heavily relies on Medicaid
resources to make up for funding shortfalls. NIHB urges the Committee
to maintain the Medicaid program as is, and expand its reach and
availability for AI/ANs.
Expansion of Self-Governance at HHS: For over a decade, Tribes have
been advocating for expansion of self-governance authority to HHS
programs outside of IHS. Self-governance represents efficiency,
accountability and best practices in managing and operating Tribal
programs and administering Federal funds at the local level. This
proposal was deemed feasible by a Tribal/Federal HHS workgroup in 2011.
Therefore, NIHB requests the Committee direct HHS to enter into pilot
projects for self-governance in fiscal year 2020.
Thank you for the opportunity to submit testimony on the fiscal
year 2020 HHS budget. We thank the Committee for its efforts towards
prioritizing funding to Indian Country. Please do not hesitate to
contact our offices directly if you have any questions or if you
require additional information.
[This statement was submitted by Victoria Kitcheyan, Chairperson,
National
Indian Health Board.]
______
Prepared Statement of the National Institute of Child Health and Human
Development
I am writing on behalf of the Friends of NICHD, a coalition of over
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 $1.6 billion in fiscal year 2020, an increase of $94
million over fiscal year 2019. We also respectfully ask the
subcommittee to maintain its commitment to increasing funding for the
National Institutes of Health (NIH) by providing $41.6 billion in
fiscal year 2020, a $2.5 billion increase over fiscal year 2019.
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 build upon the initiatives listed below
to produce new insights and solutions to benefit women, children, and
families in your districts and States.
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.
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 report on this data to ensure that all populations,
including children, benefit from research. 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.
Reproductive Sciences.--Research on the basic biological mechanisms
of reproduction is a crucial foundation for all of the work of NICHD.
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, despite the fact that 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
percent 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 allows 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.
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 health 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 of cores to conduct basic and
translational research to develop effective prevention, treatment, and
intervention strategies for children and adults with developmental
disabilities.
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.
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
wellbeing 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 areas such as family demography and
intergenerational relationships; education, work, and inequality;
population health; and reproductive health.
[This statement was submitted by Joseph Laakso, Director of Science
Policy, Endocrine Society, Friends of NICHD.]
______
Prepared Statement of the National Kidney Foundation
The National Kidney Foundation (NKF) is pleased to submit testimony
regarding the impact of Chronic Kidney Disease (CKD) and requests $5
million to expand on the successes of the CDC CKD Initiative, sustained
funding for Million Hearts, $2.165 billion for the National Institute
of Diabetes, Digestive and Kidney Diseases, $32 million for HRSA
Division of Transplantation (DoT) and increases necessary for the HRSA
Bureau of Primary care to fight kidney disease. We also support a new
funding item within HHS to support innovation in new renal replacement
therapies through KidneyX.
about ckd
The National Kidney Foundation is encouraged by Secretary Azar's
goal to reduce the burden of CKD, including an emphasis on awareness
and early detection. New CDC data shows that CKD impacts 37 million
American adults, while 1 in 3 adults (73 million) are at risk. Kidney
disease can be detected through simple blood and urine tests yet often
goes undetected until very advanced because it often has no symptoms
(more than 90 percent of individuals with CKD are unaware they have
it). Over 725,000 Americans have ESRD, 511,000 of whom receive dialysis
at least 3 times per week to replace kidney function, and 215,000
Americans live with a kidney transplant. African Americans develop ESRD
at a rate of 4:1 compared to Whites and Hispanic Americans develop it
at a rate of 2:1 compared to Whites. Medicare spends nearly $114
billion annually on the care of people with CKD, including $71 billion
for individuals with CKD who have not progressed to kidney failure.
The impact of CKD is further amplified as the disease burden is
growing. A study published by researchers leading the CDC's
surveillance program shows that over half of U.S. adults age 30-64 are
likely to develop CKD. Many with CKD also have cardiovascular disease,
bone disease and other chronic conditions, contributing to poor
outcomes and increased health spending. CKD also is an independent risk
predictor for heart attack and stroke. Intervention at the earliest
stage is vital to improving outcomes, lowering healthcare costs, and
improving patient experience, yet only 6 percent of patients with high
blood pressure and 40 percent with diabetes (which are responsible for
two-thirds of all cases of ESRD) receive testing for CKD. To improve
awareness, early identification, and optimal treatment for kidney
disease, the National Kidney Foundation calls on the Committee to
sustain or increase funding for several agencies that are contributing
substantially to these improvements.
cdc nccdphp
Nearly 15 years ago, the National Kidney Foundation worked with
Congress to address the social and economic impact of kidney disease
through the establishment of the CDC Chronic Kidney Disease Initiative.
Results of the initiative include a heightened awareness of and
information about CKD, a surveillance program, and educational
resources for health professionals and the public. To enhance the fight
against CKD, the National Kidney Foundation requests $5 million for the
CKD program to establish and implement activities between national,
State, and local public health networks and national partners to (1)
develop strategies to identify and address gaps in CKD early detection
and monitor progress; (2) support strategies to improve CKD early
detection and treatment by primary care providers and; (3) facilitate
the dissemination of information through State and local public health
networks.
Another key to improving public health is addressing the link
between kidney disease and cardiovascular disease. The National Kidney
Foundation is collaborating with Million Hearts to improve assessment
for CKD among those with hypertension. We urge Congress to continue
support for Million Hearts in its goal to reduce heart attack and
stroke by 1 million by 2022.
nih niddk
NKF supports the Friends of NIDDK request of $2.165 billion for
fiscal year 2020. Despite the impact of CKD on Medicare, NIH funding
for kidney disease research is only about $600 million annually.
America's scientists are at the cusp of many potential breakthroughs in
improving our understanding of CKD and providing new therapies to delay
and treat kidney diseases, which has the potential to provide cost
savings to the government like that of no other chronic disease.
hrsa bureau of primary care
The HRSA Bureau of Primary Care supports a national network of more
than 9,800 health clinics for 1 in 13 people in underserved communities
who otherwise would have inadequate or no access to care. Community
Health Centers can serve as a first line of detection and care for
people at risk and with CKD. NKF urges the Committee to increase
funding for federally Qualified Community Health Centers to improve
testing of CKD among those with diabetes and hypertension by including,
in the Uniform Data System (UDS), laboratory values for estimated
Glomerular Filtration Rate (eGFR) and urine albumin to creatinine ratio
(ACR), which provide vital information on kidney function and the risk
of progression and cardiovascular complications and CKD diagnosis. This
would align with Healthy People 2020 objectives related to CKD
detection and provide a critical data source for CKD surveillance.
hrsa dot
The Division of Transplantation supports initiatives to increase
the number of donor organs, including the National Living Donor
Assistance program which helps offset living donors' expenses that are
not reimbursed by insurance or other programs. We support the House
Appropriations Committee request of $32 million to help ensure more
ESRD patients have access to kidney transplantation, the therapy
associated with the best outcomes. Despite an increase in the number of
transplants, the wait list has remained relatively constant with nearly
115,000 people waiting for a life-saving organ, including 95,000 who
are waiting for a kidney. Transplant experts agree the best opportunity
to significantly increase the number of transplants is through living
donation. However, barriers to living donation, including financial
barriers so that individuals are not burdened with out of pocket
expenses related to their donation, must be addressed. This funding
also will help support a five-year pilot that will launch this Summer
to test the impact covering lost wages for living donors has on
increasing organ donation. We further request $1.5 million of the
funding be used for social and behavioral interventions by community-
based organizations to empower and educate kidney patients to seek a
transplant from a living donor.
In October 2018 NKF issued the report of our Consensus Conference
to Reduce Kidney Discards which brought transplant experts and
government agencies together to address ways to remove barriers on the
use of deceased donor kidneys that many believe are suitable for
transplant. We have shared opportunities such as changes to transplant
program metrics used by OPTN and changes to Medicare reimbursement for
high-risk kidneys with the Administration. We also developed the Big
Ask Big Give, a community-based program for patients, families and
potential kidney donors designed to increase living kidney donation.
The National Kidney Foundation does not ask the Government to bear
the responsibility CKD on its own and we have undertaken initiatives to
drive forward improvements in kidney care. Our CKDIntercept initiative
aims to transform Primary Care Practitioners' (PCP) detection and care
of Americans with CKD by deploying evidence based clinical guidelines
into primary care settings through education programs, symposia and
practical implementation tools. Through this initiative, we have
collaborated with the American Society for Clinical Pathology (ASCP)
and the Nation's leading commercial laboratories and clinical
laboratory societies to help remove barriers to CKD testing. A
component of this new collaboration is a ``Kidney Profile'' which
combines the blood and urine testes needed to calculate the eGFR, and
assess kidney function and urine ACR, which assesses kidney damage. We
also developed and submitted recommendations to CMMI for a patient-
focused alternative payment model that will foster collaboration among
PCPs and nephrologists to slow progression of CKD and ease transitions
for those that progress to ESRD. The pilot will be practitioner-led and
supported by a multidisciplinary healthcare team. In addition, it will
provide Primary Care Practitioners and nephrologists with the resources
they need to better care for people with CKD, while also ensuring they
are accountable for measurable improvements in care. Practitioners will
be rewarded for identifying kidney disease early so that the
progression of the disease can be slowed resulting in better, long-term
patient outcomes, such as a reduction in the number of patients dying
early, requiring dialysis or needing kidney transplantation.
Thank you for your past support and your consideration of our
requests for fiscal year 2020.
______
Prepared Statement of the National League for Nursing
As the oldest nursing organization in the United States, the NLN
promotes excellence in nursing education to build a strong and diverse
nursing workforce to advance the health of the Nation and the global
community. The League represents more than 1,200 nursing schools,
40,000 members, and 25 regional constituent leagues. The NLN thanks the
subcommittee for continued support for these programs. The Title VIII
nursing workforce development programs ensure a strong nursing
workforce able to meet the health demands of an aging population as
well as the current opioid epidemic. The NLN urges the subcommittee to
fund the Health Resources and Services Administration's (HRSA) Title
VIII nursing workforce development programs at $266 million in fiscal
year 2020.
nursing education and workforce
The changing landscape of patient care, driven by greater consumer
engagement, practice-driven technologies, and virtual healthcare,
provides a unique context for teaching and learning. Teaching with and
about emerging technology is the future of nursing education. Providing
nursing care in a highly technological, connected work environment is
the future of nursing practice (NLN 2015).
A high quality-nursing workforce equals high quality care for the
Nation. With 4.8 million active, licensed vocational/practical nurses
(LVNs/LPNs) and registered nurses (RNs), nurses are the primary
professionals delivering quality healthcare in the Nation (NCSBN 2019).
According to the Bureau of Labor Statistics (BLS), the RN workforce is
projected to grow by 15 percent from 2016 to 2026, The BLS also
estimates the LVN/LPN workforce will grow by 12 percent, the advanced
practice registered nurses (APRNs) workforce will grow by 31 percent,
and the need for nursing faculty will grow 24 percent during the same
period (BLS 2017).
This increase is fueled by the opioid epidemic, demand for
healthcare services for our aging population; for patients with various
chronic conditions, such as arthritis, dementia, diabetes, and obesity;
and for staffing facilities that provide long-term rehabilitation for
stroke and head injury patients and those that treat people with
Alzheimer's. In addition, because many older people prefer to be
treated at home or in residential care facilities, nurses will be in
demand in those settings.
diversity in nursing
Diversity and quality healthcare are inseparable. Diversity
signifies that each individual is unique and recognizes individual
differences--race, ethnicity, gender, sexual orientation and gender
identity, socio-economic status, age, physical abilities, religious
beliefs, political beliefs, or other attributes. It encourages self-
awareness and respect for all persons, embracing and celebrating the
richness of each individual. It also encompasses organizational,
institutional, and system-wide behaviors in nursing, nursing education,
and healthcare (NLN 2016).
There is a great need for diversity in the nurse workforce, student
population, and faculty in order for nursing to achieve excellent care
for all. Diversity in nursing is essential to a market-driven
healthcare system that understands and addresses cultural challenges
and social determinants of health in our rapidly changing population.
Our Nation is enriched by cultural complexity--37 percent of our
population identify as racial and ethnic minorities. Yet diversity
eludes the nursing student and nurse educator populations. Minorities
only constitute 27 percent of the student population and males only 14
percent of pre-licensure RN students (NLN 2016). Workforce diversity is
especially needed where research indicates that factors such as
societal biases and stereotyping, communication barriers, limited
cultural sensitivity and competence, and system and organizational
determinants contribute to healthcare inequities.
hrsa's title viii nursing workforce development programs
For over 50 years, the Title VIII nursing workforce development
programs have provided training for entry-level and advanced practice
registered nurses (APRNs) to improve the access to, and quality of,
healthcare in underserved communities. These programs provide students
and schools of nursing with grants to strengthen education programs,
including faculty recruitment and retention efforts, facility and
equipment acquisition, clinical lab enhancements, loans, scholarships,
and services that enable students to overcome obstacles to completing
their nursing education programs. Many of the Title VIII grantees
collaborate with health delivery sites in medically underserved
communities, which is especially important as the opioid epidemic
continues to ravage the country. Your ongoing support of HRSA's Title
VIII nursing programs will help build the workforce needed to battle
this epidemic.
Information from HRSA's Title VIII programs listed below provides a
perspective on current Federal investments.
The Advanced Nursing Education (ANE) programs increase the number
of qualified nurses in the primary care workforce by improving advanced
nursing education through traineeships as well as curriculum and
faculty development. The programs include a preference for supporting
rural and underserved communities. In academic year 2017-2018, grantees
of the ANE program trained 3,649 nursing students and produced 1,319
graduates. ANE grantees collaborated with 1,923 healthcare delivery
sites to provide clinical and experiential training to students.
Approximately 41 percent of these sites were located in medically
underserved communities, and 63 percent were in primary care settings.
The Nursing Workforce Diversity (NWD) program increases nursing
education opportunities for individuals from disadvantaged backgrounds,
including racial and ethnic minorities who are underrepresented among
registered nurses. The program supports disadvantaged students through
student stipends and scholarships, and a variety of pre-entry
preparation, advanced education preparation, and retention activities.
In academic year 2017-2018, the NWD program supported 65 college-level
degree programs as well as 164 training programs and activities
designed to recruit and retain health professions students. These
programs trained 6,549 students, including 2,886 students who graduated
or completed their programs. In addition to providing support to
students, NWD grantees partnered with 743 training sites during the
academic year to provide 6,888 clinical training experiences to
trainees across all programs. Approximately 48 percent of training
sites were located in medically underserved communities and 33 percent
were in primary care settings.
The Nurse Education, Practice, Quality, and Retention Programs
(NEPQR) address national nursing needs and strengthen the capacity for
basic nurse education and practice under three priority areas:
Education, Practice and Retention. The NEPQR programs support the
development, distribution and retention of a diverse, culturally
competent health workforce that can adapt to the population's changing
healthcare needs and provide the highest quality of care for all. Woven
throughout the programs is the aim to increase the number of Bachelor
of Science in Nursing (BSN) students exposed to enhanced curriculum and
with meaningful clinical experience and training in medically
underserved and rural communities, who will then be more likely to
choose to work in these settings upon graduation. In academic year
2017-2018, the NEPQR programs focused on behavioral health integration
in community-based primary care settings, RNs in primary care, and
veteran RNs in community-based primary care settings.
The Nurse Faculty Loan Program (NFLP) seeks to increase the number
of qualified nurse faculty by awarding funds to schools of nursing who
in turn provide student loans to graduate-level nursing students who
are interested to serve as faculty. Upon graduation, student borrowers
are eligible to receive partial loan cancellation (up to 85 percent of
the loan principal and interest over 4 years) in exchange for serving
as full-time faculty at an accredited school of nursing. In academic
year 2017-2018, 80 schools received new NFLP awards. Awardees supported
2,172 nursing students pursuing graduate level degrees as nurse
faculty. The majority of students (84 percent) who received loans
during the academic year were pursuing doctoral-level nursing degrees
(e.g., PhD, DNP, DNSc/DNS, or EdD). By the end of the academic year,
800 trainees graduated, 94 percent of whom intended to teach nursing.
The NURSE Corps Scholarship and Loan Repayment Program (NURSE
Corps) helps to improve the distribution of nurses by supporting nurses
and nursing students committed to working in communities with
inadequate access to care. In exchange for scholarships or educational
loan repayment, NURSE Corps members fulfill their service obligation by
working in Critical Shortage Facilities (CSFs) located in health
professional shortage areas and medically underserved communities
around the Nation, which include rural communities and other identified
geographic areas with populations that lack access to primary care
services. In fiscal year 2018, 54 percent of NURSE Corps loan repayment
program participants extended their service commitment for an
additional year and 89.7 percent of NURSE Corps participants were
retained in service at a critical shortage facility for up to 2 years
beyond the completion of their NURSE Corps service commitment. In
addition, in fiscal year 2018, 97 percent of NURSE Corps scholarship
program awardees are pursuing their baccalaureate degree or advanced
practice degree. In fiscal year 2019, HRSA directed up to 20 percent of
scholarship awards to NPs specializing in psychiatric-mental Health
with the goal of leveraging HRSA funding to address the opioid crisis.
The NLN urges the subcommittee to fund the Title VIII nursing
workforce development programs at $266 million in fiscal year 2020.
[This statement was submitted by G. Rumay Alexander, EdD, RN, FAAN,
President, and Beverly Malone, PhD, RN, FAAN, Chief Executive Officer,
National League for Nursing.]
______
Prepared Statement of the National Minority Consortia
The National Minority Consortia (NMC) submits this statement
regarding the fiscal year 2022 advance appropriations for the
Corporation for Public Broadcasting (CPB). We represent a coalition of
five national organizations, who, with modest support from CPB, bring
authentic and unique stories of diversity to all of America's
communities via public broadcasting and other media, including content
transmitted digitally over the Internet. Our requests are two: (1) To
provide a much needed increase in funding to $495 million in fiscal
year 2022 advance funding for CPB; and (2) that Congress direct CPB to
meaningfully increase its commitment to diverse programming and serving
underserved communities. We ask the Committee to:
1. Provide fiscal year 2022 advance appropriation for CPB of $495
million, to continue a service that provides 97 percent of
Americans, including those in rural areas with free, unique
local and national education resources that would otherwise not
be available. CPB has been level-funded at $445 million a year
for the past 10 years.
Public broadcasting upholds strong ethics of responsible journalism
and thoughtful examination of American history, life and culture. In
America today, where minorities comprise over 36 percent of the
population, and where racial and ethnic minorities make up more than
half of all children born in the United States today, it is
particularly important that Congress support continued funding of CPB
so that our public media system can continue to deliver well-researched
and authentic stories about America's unique and rapidly diversifying
populace.
From children's educational content to public safety awareness,
America's public media broadcasting system is a necessary tool to
ensure a well-educated, well-informed, and cultured civil society
capable of meeting the responsibilities of self-government in the
world's most important democracy. As the last locally-controlled media,
the Federal investment in public media is essential to making these
services available to everyone, everywhere, every day for free.
2. Direct CPB to increase its efforts for diversity to meet the
demands of a growing and diverse public. We appreciate that the
House Appropriations Committee last year included in its House
Report 115-862, pg. 163, the statement that ``Programming that
reflects the histories and perspectives of diverse racial and
ethnic communities is a core value and responsibility of public
broadcasting, therefore the Committee supports continued
investment in the National Minority Consortia to help
accomplish this goal.'' We urge Congress in bill and/or report
language to continue to include language that recognizes the
five members of the National Minority Consortia, and the need
to rapidly increase and expand efforts across programming,
content creation, and work-force, to meet the demands of an
increasingly diverse public. We suggest language such as:
The Committee recognizes the importance of the partnership CPB
has with the National Minority Consortia, which helps
develop, acquire, and distribute diverse content to Public
Media entities to serve underrepresented communities. These
stories of diversity transcend statistics and bring
universal American stories to all U.S. citizens. As
populations of diverse ethnic backgrounds are increasing in
cities and towns across the Nation, Public Media entities,
TV and Radio stations and digital platforms must strive to
meet this audience's needs. The Committee encourages CPB to
support and expand this critical partnership, including
instituting funding guidelines that encourage and reward
public media that represent and reach a diverse American
public.
The five NMC organizations combined receive just under $6.8 million
in discretionary funds from CPB per year, which equals to 1.5 percent
of the CPB budget. A modest 10 percent increase to the NMC
appropriation for a combined total of $7.5 million for the NMC will go
a long way in supporting the continued development of diverse content
and the support of filmmakers of color. It is essential that the images
and stories on public media reflect the demographics of our country and
that as a system we strive to bring a better understanding of our
multicultural heritage.
about the national minority consortia
The NMC is made up of five separate and distinct organizations that
address the need for programing that reflects America's growing ethnic
and cultural diversity. By developing and funding diverse content,
training and mentoring the next generation of minority media makers, as
well as brokering relationships between content creators and content
aggregators, the NMC helps to ensure the future strength and relevance
of Public Media content from and to diverse communities.
Black Public Media (BPM) was founded in 1979 as the National Black
Programming Consortium fulfilling the need to develop films and
television programs about the Black experience that took creative risks
and addressed the needs of underserved audiences. Today, Black Public
Media (BPM) fulfills its mission by providing seed money for projects
and opportunities for distribution through PBS. For many filmmakers,
including Spike Lee, Julie Dash, Stanley Nelson, Shola Lynch, and Byron
Hurt, BPM became a beacon of support at the earliest stages of their
careers. Today, after nearly 40 years of historic work, BPM continues
to leverage its expertise by investing in innovative content creators
and bringing to the public dynamic programs about the Black experience
that provoke, educate, entertain and enlighten on and off the screen
The Center for Asian American Media (CAAM) is a nonprofit
organization dedicated to presenting stories that convey the richness
and diversity of Asian American experiences to the broadest audience
possible. CAAM funds, produces, distributes and exhibits works in film,
television and digital media. CAAM's award-winning documentaries reach
millions of viewers per year across the U.S. on public media. Recent
films supported by CAAM include The Chinese Exclusion Act by Ric Burns
and Li-Shin Yu, and the forthcoming Norman Mineta and His Legacy: An
American Story by Dianne Fukami. CAAM also presents CAAMFest, the
world's largest film festival for Asians and Asian American film.
Latino Public Broadcasting (LPB) is public's media largest Latino-
focused content developer and funder providing programming to public
television's nearly 360 stations and media platforms. In support of
Latino filmmakers, LPB has awarded over 12 million dollars to media
makers nationwide, and provided over 233 hours of national programming
and digital content to PBS. LPB produces VOCES on PBS, the only public
media series showcasing the rich diversity of the Latino American
experience. Some productions include the landmark 3-part series Latino
Americans, DOLORES, John Leguizamo's Road to Broadway, Willie
Velasquez: Your Vote is Your Voice among many others.
Pacific Islanders in Communications (PIC) is to support, advance,
and develop Pacific Island media content and talent that results in a
deeper understanding of Pacific Island history, culture and
contemporary challenges. PIC helps Pacific Islander stories reach
national audiences through funding support for productions, training
and education, broadcast services, and community engagement. Last year,
PIC provided over 20 hours of content to public media, fostered 161 new
partnerships, and awarded $260,000 to film projects. In 2019, PIC's
documentaries Out of State and Eating Up Easter will air on the award-
winning Independent Lens series on PBS. PIC's Emmy award-winning, six-
part series Family Ingredients is gearing up for its third season on
PBS. Pacific Heartbeat, PIC's seminal series which reached over 24
million households last year will begin its eighth season in May 2019.
Vision Maker Media (VMM) empowers and engages Native People to
share stories. VMM serves Native producers and Indian country, in
partnership with public television and radio, by working with Native
media makers to develop, produce and distribute educational programs
for public television and radio. This year, Vision Maker Media will
deliver 20 documentaries to public broadcasting stations nationally.
VVM supports training to increase the number of American Indians and
Alaska Natives producing quality public broadcasting programs. A key
strategy for this work is the development of strong partnerships with
tribal nations, Indian organizations and Native communities. Reaching
the general public and the global market is the ultimate goal for the
dissemination of Native produced media that shares Native perspectives
with the world. VMM sees new opportunities to increase diversity in
programming, production, audience and employment in the new media
environment.
______
Prepared Statement of the National Multiple Sclerosis Society
Mr. Chairman and Members of the Subcommittee, the National Multiple
Sclerosis Society (Society) thanks you for this opportunity to provide
testimony regarding funding of critically important Federal programs
that impact those affected by multiple sclerosis (MS). We respectfully
urge the Subcommittee to provide the following in fiscal year 2020:
--$454 million for the Agency for Healthcare Research and Quality
(AHRQ)
--$8.445 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;
--$20 million for the Lifespan Respite Care Program;
--Robust support for Medicare and Medicaid and protection of
Medicaid's current financing structure; and
--At least $41.6 billion for the National Institute of Health (NIH),
including funds provided to the agency through the 21st Century
Cures Act (Public Law 114-255) for targeted initiative;
--$150 million for the Patient Centered Outcomes Research Institute
(PCORI); and
--An increase above fiscal year 2019's funding level of $12.9 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.
Results of a new study from the Society confirm that nearly one million
Americans live with MS--more than double previous estimates. The
Society addresses the challenges of each person affected by MS so that
each person affected by MS can live their best life.
We believe that the President's fiscal year 2020 proposed budget
request would set back research and hamper the ability of people with
MS from receiving the coverage and services they need to live their
best lives. The Society urges the Committee to reject these proposed
cuts and instead, adequately fund research and programs and health
coverage and services important to people with MS.
Agency for Healthcare Research and Quality (AHRQ).--AHRQ is a small
agency that is revolutionizing the healthcare system based on
healthcare costs and quality. It provides evidence for healthcare
providers to use to make healthcare safer, higher quality, more
accessible, equitable, and affordable. Reports like these are vital in
ensuring that the healthcare community has science and evidence-based
information to aid in consultations on treatment decisions. The Society
does not endorse the President's call for AHRQ's consolidation but
calls on Congress to provide $460 million for the Agency's base funding
level in fiscal year 2020.
centers for disease control and prevention
The CDC is tasked with protecting public health and safety through
the control and prevention of disease, injury, and disability.
Unfortunately, budgetary cuts, insufficient and outdate data
infrastructure and public health emergencies have limited its ability
to collect data to track the incidence and prevalence of neurological
diseases like MS. The 21st Century Cures Act authorized the creation of
the National Neurological Conditions Surveillance System (NNCSS) within
the Agency, and Congress provided funding for this important System
last year. The Agency has set up demonstration projects in MS and
Parkinson's disease in order to determine what information to collect
and the best methods that can be expanded to use in other neurologic
areas. Having strong and reliable prevalence data is critical to
protecting the public health and funding new and novel research to
treat neurologic conditions. The CDC has updated its website to reflect
their implementation plan and timeline as well as a logic model that
has their long-term strategy for the Surveillance system. We urge
Congress to maintain funding for this important public health
surveillance program and fund the CDC at $7.8 billion in fiscal year
2020--inclusive of $5 million for the NNCSS.
centers for medicare & medicaid services
Medicare.--It is estimated that approximately 30 percent of the MS
population relies on Medicare as its primary insurer. Many of these
individuals are under the age of 65 and receive the Medicare benefit
because of their disability. The Society supports ensuring appropriate
reimbursement levels for Medicare providers; maintaining access to
diagnostics and durable medical equipment including power and manual
complex rehabilitation technology and related accessories; protecting
access to needed speech, physical and occupational therapy services;
updating local coverage determinations to keep pace with advances in
care; and affordable access to prescription drugs.
Medicaid.--Medicaid provides comprehensive health coverage to over
10 million persons living with disabilities, plus six million persons
with disabilities who rely on Medicaid to fill Medicare's gaps.
Approximately 5-10 percent of people with MS have Medicaid coverage.
People with MS also rely on Medicaid for access to long-term services
and supports. The Society urges Congress to maintain funding for
Medicaid and reject proposals to cap or block grant the program. Any of
these proposals would merely shift costs to States, forcing States to
shoulder a seemingly insurmountable financial burden or cut services on
which our most vulnerable rely. The Society also urges Congress to
protect and promote access to home- and community-based care in line
with the 1999 U.S. Supreme Court decision Olmstead.
lifespan respite care program
The Lifespan Respite Care Program provides competitive grants to
States to establish or enhance statewide lifespan respite programs that
better coordinate and increase access to quality respite care.
Approximately one quarter of individuals living with MS require long-
term care services at some point during their lifetime. Often, a family
member steps into the role of primary caregiver. Family caregivers
allow the person living with MS to remain home for as long as possible
and avoid premature admission to costlier institutional facilities.
Family caregiving, while essential, can be draining and stressful.
Respite offers professional short-term help to give caregivers a break
from the stress of providing care and has been shown to provide family
caregivers with the relief necessary to maintain their own health and
bolster family stability. Much existing respite care has age
eligibility requirements and importantly, the Lifespan Respite Care
Program serves families regardless of special need or age. MS is
typically diagnosed between the ages of 20 and 50, and Lifespan Respite
programs are often the only open door to needed respite services. For
these reasons, the Society asks that Congress provide $20 million for
the Lifespan Respite Care Program in fiscal year 2020.
national institutes of health
The NIH is the Nation's premiere biomedical research institution
and directly supports jobs in all 50 States. The NIH is a fundamental
partner in the Society's mission to stop MS in its tracks, restore what
has been lost, and end MS forever. To date, the Society has invested
over $1 billion to MS research to date; but we rely on Congress to
provide consistent and sustained investments to the agency to cultivate
an environment that is optimal for scientific discovery. NIH continues
to provide the basic research necessary to facilitate the development
of novel therapies. In fact, the NIH has provided the basic research
that has led to every MS treatment that is available today. Though much
progress has been made in MS, there is still a great deal of unmet
need, particularly those who live with progressive forms of the
disease- now is not the time to decrease much needed Federal investment
in NIH. The Society urges Congress to provide at least $41.6 billion
for the NIH, including funds provided to the agency through the 21st
Century Cures Act for targeted initiatives.
patient-centered outcomes research institute
PCORI serves a vital role in ensuring that the public and private
healthcare sectors have valid and trustworthy data on health outcomes,
clinical effectiveness, and appropriateness of different medical
treatments by both conducting research and evaluating existing studies.
Its research addresses the need for real-world evidence and patient-
focused outcomes data that will improve healthcare quality and help
shift healthcare payment models toward value-based care. To date, PCORI
has invested over $69 million in comparative effectiveness studies in
MS. These studies will provide important evidence for the best ways to
address questions surrounding what care approaches work best for whom,
in what care settings. We recommend that Congress reauthorize PCORI to
continue its important mission, fully fund its work in fiscal year
2020, and ensure that it has reliable and sustainable funding to
continue its work in the future.
social security administration
Because of the unpredictable nature and sometimes serious
impairment caused by the disease, SSA recognizes MS as a chronic
illness or ``impairment'' that can cause disability severe enough to
prevent an individual from working. During such periods, people living
with MS are entitled to and rely on Social Security Disability
Insurance (SSDI) or Supplemental Security Income (SSI) benefits to
survive. The National MS Society urges Congress to provide robust
funding above the President's request of $12.773 billion for the Social
Security Administration's administrative budget.
The National MS Society thanks the Committee for the opportunity to
provide written testimony on our recommendations for fiscal year 2020
appropriations. The agencies and programs we have outlined above are of
vital importance to people living with MS. Please do not hesitate to
contact the Society with any questions. 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, Senior Director,
Federal
Government Relations, National Multiple Sclerosis Society.]
______
Prepared Statement of the National Nurse-Led Care Consortium
On behalf of the National Nurse-Led Care Consortium (NNCC), I would
like to thank the members of the Subcommittee for the opportunity to
submit testimony regarding the importance of fully funding nursing
workforce programs and how these programs impact nurses working in
nurse-led models of care. Specifically, NNCC requests that $266 million
be appropriated for the Nursing Workforce Development Programs
(authorized under Title VIII of the Public Health Service Act [42
U.S.C. 296 et seq.]), and $170 million be appropriated for the National
Institute of Nursing Research (NINR).
NNCC is a 501(c)(3) nonprofit public health organization that seeks
to advance all forms of nurse-led care through policy development,
technical assistance, and innovative programing. Nurse-led care exists
at the intersection of multidisciplinary healthcare, where nurses have
a transformative role as holistic caregivers, advocates, and leaders.
Nurses have unique skills and insight to treat the whole person,
serving as a critical connection between compassionate and evidence-
based healthcare. Because of their education and community connections,
advanced practice nurses are able to deliver high quality and cost-
effective services to our most vulnerable populations.
Primarily, nurse practitioners run the health centers and practices
NNCC represents. Nurse practitioners and other advanced practice nurses
offer patient-centered care that is sensitive to patient needs and
concerns. They work in all types of healthcare settings and
specialties, such as retail health and acute care, but their services
primarily revolve around primary care. NNCC assists these nurses by
advocating for policy reforms that increase access to nurse-led care,
designing community-based programs that address public health needs and
offering expert technical assistance that enhances the sustainability
of innovative nurse-led practice models.
As part of its mission, NNCC represents nonprofit, nurse-managed
health clinics (sometimes called nurse-managed health centers or
NMHCs). Section 254c-1a of the Public Health Service Act defines the
term 'nurse-managed health clinic' as a ``nurse-practice arrangement,
managed by advanced practice nurses, that provides primary care or
wellness services to underserved or vulnerable populations and that is
associated with a school, college, university or department of nursing,
federally qualified health center (FQHC), or independent nonprofit
health or social services agency.'' \1\ Recent estimates indicate that
there are approximately 500 nurse-managed clinics nationwide, including
birthing centers and school-based clinics. There are also approximately
2,500 nurse-led retail clinics based in pharmacies, grocery stores and
other retail outlets around the country. Nurse-led models of care offer
a full range of health services, including health promotion and disease
prevention, to low-income, underinsured, and uninsured clients.
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\1\ Section 5208 of the Affordable Care Act.
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Because many nurse-led models of care are affiliated with schools
of nursing, these clinics also help to build the capacity of the
community-based healthcare workforce by acting as teaching and practice
sites for nursing students and other health professionals. Each clinic
associated with a nursing institution provides clinical placements for
an average of 50 to 60 students a year.\2\ These students include
graduate and undergraduate nursing students, as well as medical,
physician assistant, and social work students, among others.\3\
Students participating in post-clinical focus groups express a high
level of satisfaction with NMHC-based clinical placements, commenting
that their experience in NMHCs highlighted the need to reduce
healthcare disparities and respect patient diversity. A large
percentage of the Federal funding for academically-affiliated NMHCs
comes from the Title VIII Nurse Education, Practice, Quality, and
Retention (NEPQR) program. Granting the requested appropriation will
help ensure NMHCs and others forms of nurse-led care can continue
taking advantage of the NEPQR program. Nurse-led clinical placements
are particularly important to nursing education, because they offer
nursing students hands-on experience working in underserved
communities. These clinical placement sites also provide students with
the opportunity to form relationships with nurse mentors working in
leadership roles that can help build important business development and
practice management skills often underemphasized in traditional nursing
school curriculums.
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\2\ NNCC membership survey.
\3\ NNCC membership survey.
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One good example of the benefit of Title VIII funding to nurse-led
clinics comes from the Vanderbilt University School of Nursing, which
received a $999,101 grant from the NEPQR program in 2017. The two-year
grant gives the Clinic at Mercury Courts, a nurse-managed primary care
clinic located in one of Nashville's most economically depressed areas,
the resources to add a psychiatric mental health nurse practitioner,
social worker, and psychiatrist to its existing primary care team. The
rate of substance abuse and mood disorders experienced by the community
served by this clinic is more than four times the national average. The
additional providers enable the clinic to comprehensively screen and
treat both medical and behavioral health conditions, while addressing
some of the problems associated with the deepening opioid crisis. In
additional to its clinical services, the Mercury Courts clinic
strengthens nursing education by offering clinical placements to
nursing, medical, pharmacy, social work, and physician assistant
students from a variety of disciplines and schools, including Lipscomb
University, Tennessee State University, Trevecca Nazarene University,
University of Tennessee, and Vanderbilt's College of Arts and Science,
Owen Graduate School of Management, Peabody College and Schools of
Nursing, Divinity, Law and Medicine.
Title VIII funding is crucial to the success of the Mercury Court
clinic, as well as hundreds of others like it across the Nation. For
this reason, NNCC again requests that the Subcommittee appropriate $266
million to support Title VIII programs.
With regard to the National Institute of Nursing Research, NNCC
believes that fully funding nursing research is vital to the
recruitment and retention of qualified nursing faculty. According to
the American Association of Colleges of Nursing's report on 2016-2017
Enrollment and Graduations in Baccalaureate and Graduate Programs in
Nursing, U.S. nursing schools turned away 64,067 qualified applicants
from baccalaureate and graduate nursing programs in 2016 due to an
insufficient number of faculty, clinical sites, classroom space,
clinical preceptors, and budget constraints.\4\ Appropriating $170
million to the National Institute of Nursing Research will ensure that
there are adequate research opportunities available to attract and
retain experienced nursing faculty, while also improving nursing
practice and patient outcomes. These enhanced research opportunities,
in conjunction with the increase in clinical placement sites created by
nurse-led practices funded through the requested Title VIII
appropriation, constitute a two-pronged strategy for alleviating the
nursing faculty shortage.
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\4\ American Association of Colleges of Nursing, Nursing Faculty
Shortage Information Sheet, Available here: http://www.aacnnursing.org/
News-Information/Fact-Sheets/Nursing-Faculty-Shortage.
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NNCC once again thanks the members of the Subcommittee for the
opportunity to submit this testimony. If there any questions, please do
not hesitate to contact me at [email protected].
Sincerely.
[This statement was submitted by Cheryl L. Fattibene, MSN, MPH,
CRNP, Chief Nurse Practitioner Officer, National Nurse-Led Care
Consortium.]
______
Prepared Statement of the National Pancreas Foundation
summary of fiscal year 2020 appropriations recommendations
_______________________________________________________________________
--The Foundation joins the broader research community in requesting
that the National Institutes of Health (NIH) receive a funding
increase of at least $2.5 billion for fiscal year 2020 to bring
total agency funding up to a minimum of $41.6 billion annually.
--Please provide proportional increases for the various NIH
Institutes and Centers, including the National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK) and the
National Cancer Institute (NCI).
--The Foundation joins the broader public health community in
requesting that the Centers for Disease Control and Prevention
(CDC) receive a funding increase of at least $500 million in
discretionary resources to bring total agency funding up to a
minimum of $7.8 billion annually.
--Please provide at least $500,000 in dedicated programmatic
funding to initiate a public health program on pancreatitis
at CDC's National Center for Chronic Disease Prevention and
Health Promotion to facilitate critical surveillance,
research, professional education, and public awareness
activities.
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray, and distinguished Members of
the Subcommittee, thank you for the opportunity to submit testimony on
behalf of the National Pancreas Foundation (NPF) and the patient
community that we serve. We deeply appreciate the investments in the
National Institutes of Health (NIH) that have occurred over the past
four fiscal years and the research advancements that additional
resources have facilitated. For fiscal year 2020, we urge you to
maintain this commitment to medical research and to similarly increase
support for critical public health programs, most notably the Centers
for Disease Control and Prevention (CDC). Thank you again.
about the foundation
The National Pancreas Foundation is a patient-driven, non-profit
organization that provides hope for those suffering from pancreatitis
and pancreatic cancer by funding cutting edge research, advocating for
new and better therapies, and providing support and education for
patients, caregivers, and healthcare professionals.
conditions of the pancreas
Pancreatitis can be acute of chronic. It is characterized by
inflammation of the pancreas, and chronic pancreatitis does not heal or
improve--it gets worse over time and leads to permanent damage. Chronic
pancreatitis eventually impairs a patient's ability to digest food and
make pancreatic hormones. Chronic pancreatitis can strike at any age,
but often develops in patients between the ages of 30 and 40, and is
more common in men than women. The annual incidence rate is 5 -12 per
100,000 and the prevalence is 50 per 100,000. Pancreatitis can be
managed with proper information and healthy practices.
Pancreatic cancer is currently the third leading cause of cancer
deaths in the United States. One of the major challenges associated
with pancreatic cancer is that the condition often goes undetected for
a long period of time because signs and symptoms seldom occur until
advanced stages. By the time symptoms occur, cancer cells are likely to
have spread (metastasized) to other parts of the body, often preventing
surgical removal of tumors. Research indicates an emerging link between
pancreatitis and the onset of pancreatic cancer.
nih research: progress and opportunities
NIDDK has been a leader on pancreatitis research while NCI has
facilitated key breakthroughs for pancreatic cancer. More work needs to
be done though as translation and clinical research are necessary to
ensure innovative treatment options and diagnostic tools can be
deployed to the benefit of affected patients.
In this regard, NIDDK recently hosted an effort with the community
to capitalize on progress for pancreatitis and ensure promising ideas
move into the FDA pipeline for review. The need remains great as
pancreatitis patients currently have extremely limited treatment
options despite the severity of the illness.
Moreover, the Cancer Moonshot has been extremely meaningful for
scientific efforts focused on pancreatic cancer. Similar to
pancreatitis though, treatment options remain extremely limited despite
the severity of the disease. In fact, due to improvements in other
areas and an overall lack of progress in outcomes, pancreatic cancer is
now the third leading cause of cancer deaths in America.
Over recent years, key Committee Recommendations have been included
that have moved key pancreas research projects forward and it is our
hope that the Subcommittee will continue to demonstrate an interest in
this area during the fiscal year 2020 process.
cdc public health opportunities
The National Center for Chronic Disease Prevention and Health
Promotion coordinates line-item public health programs on a variety of
conditions. Recently, CDC has limited their public health activities
almost exclusively to these named efforts. While these programs have
been highly successful for the conditions they represent, there is a
tremendous public health need to launch a similar program for
pancreatitis.
A lack of adequate professional and public information about
pancreatitis leads to a suboptimal situation where patients are not
effectively managing the condition and as it progresses inappropriate
interventions occur, most notably unnecessary surgery to remove the
pancreas. The CDC can fill key knowledge gap with a pancreatitis
program to disseminate best practices to the professional community and
make sure public health messages reach at-risk individuals.
Pancreatitis can often be managed if the proper information is
available, which can prevent the progression of disease, including the
onset of pancreatic cancer.
A modest investment of $500,000 for a pancreatitis program would
pay dividends in terms of reduced patient suffering and reduced costs
to the healthcare system.
community story: by jane macke--louisiana
Seeing your child writhing in pain and not being able to do
anything able is a horrible feeling. Not being able to insure that your
child gets the medical attention needed is just as bad. As a parent
with a child with pancreatitis, I endured both due to the lack of
knowledge about pediatric pancreatitis by medical professionals. My
child endured the worst, being the patient of physicians and medical
professionals who were not sure how to treat pancreatitis. It took
several years of research, consults, and traveling to see physicians in
other States to finally get the help needed for my child.
My son, Cameron, was first diagnosed with pancreatitis at 8 years
of age, in October 2006. Cameron had been experiencing flu-like
symptoms for several days, e.g. nausea, vomiting and diarrhea. His
symptoms were getting worse, so I took him to an urgent care facility.
The physician on duty stated that Cameron was dehydrated, had
appendicitis and needed to go a hospital. At that time, 10 months after
Hurricane Katrina, the only pediatric surgeon was at Children's
Hospital in New Orleans. We immediately left the urgent care facility
and went to the Children's Hospital. Diagnostic tests were run while
Cameron was in the emergency room. The pediatric surgeon came in and
told us that the tests revealed that Cameron did not have appendicitis,
but he had abnormal fluid in the abdominal area. A pediatric
gastroenterologist was brought in to care for Cameron. He diagnosed
Cameron with pancreatitis. After ruling out trauma, the physician
thought it may have been a case of idiopathic acute pancreatitis.
However, Cameron had another severe pancreatic attack 2 months later.
After the second episode, the pediatric gastroenterologist ordered
genetic testing. Cameron was found to have two SPINK 1 mutations.
Cameron was not initially tested for cystic fibrosis, but subsequent
testing in 2015 revealed that he also has a CFTR mutation.
Being a research attorney, I did what did best--researching the
disease of pancreatitis. I found the National Pancreas Foundation
website, which included medical journal articles by Dr. David Whitcomb
and Dr. Mark Lowe. I contacted Dr. Lowe, who agreed to evaluate and
consult about my child. We went to Pittsburgh in April 2007 for the
consult. I maintained contact with Dr. Lowe and often sent emails to
him concerning Cameron's care when Cameron was hospitalized in New
Orleans because the physicians in New Orleans were unsure about how to
care for Cameron. There were times when some of the physicians did not
believe Cameron had heredity or familial pancreatitis, even though the
test results were in his chart. There were pediatric hospitalists and
ED physicians who did not believe a child could have pancreatitis and/
or suffer the pain they stated that they had. I had to learn to be an
advocate for my child and stand my ground with medical professionals. I
had to learn more about the disease of pancreatitis than some of the
medical professionals even had an interest in learning.
From 2006 through 2007, Cameron had numerous minor flares and was
hospitalized only three times during that period. Cameron's symptoms
would mainly consist of abdominal and back pain. Sometimes, he would
experience nausea. However, in February 2008, the severity of the
attacks increased. From February 2008 through October 2008, Cameron was
hospitalized five times for at least a week each time. During the
second hospitalization in October 2008, a CT scan showed that Cameron
had stones in his pancreatic duct. An adult gastroenterologist and
pancreas specialist from Ochsner Hospital was called in for a consult.
The physician performed an emergency ERCP and discovered Cameron had
pancreatic divisum. From December 2008 through February 2015, Cameron
was hospitalized at least twelve times and underwent eight ERCPs to
remove stones and place stents in the pancreatic duct. We had to travel
to San Antonio in 2011 for two of the ERCPS because there were no
physicians in New Orleans at that time that would perform an ERCP on a
child.
In February 2015, Cameron's gastroenterologist referred him to the
University of Minnesota Masonic Children's Hospital for a total
pancreatectomy with auto islet transplant. Cameron underwent the TP-AIT
in June 2015, the summer before his senior year of high school. In
addition to the physical aspects of pancreatitis, Cameron suffered with
depression and PTSD. By February 2015, Cameron had endured 36 known
episodes of pancreatitis, 21 hospitalizations and 9 ERCPs. As a parent,
I had learned more about a disease than I have never heard of 10 years
prior. I read medical journal articles and learned how to read medical
charts and test results. I kept a diary of all Cameron's
hospitalizations and tests results, which I took with me to the
hospital each time Cameron was hospitalized. There was always the
possibility that the physicians were not knowledgeable and/or would not
review Cameron's chart. (And it did happen on a few occasions).
This disease causes havoc not only on child's physical well-being,
but also on his emotional and social well-being. The numerous
hospitalizations and the pain endured diminishes the child's ability to
attend school and socialize with friends and family. Parents who care
for their child also miss work and employment opportunities. The stress
and time taken to care for one child can affect other children and
family members. Parents, as well as the child who is sick, and other
family members need support from family, friends and their community.
The cost of this disease is not just financial. It affects every part
of person's life, and every part of the family's life.
[This statement was submitted by Matt Alsante, Executive Director,
National Pancreas Foundation.]
______
Prepared Statement of the National PTA and the PACER Center
National PTA and the PACER Center would like to thank the
Subcommittee on Labor, Health and Human Services, Education and Related
Agencies (L-HHS-ED) for soliciting the views and recommendations of
public witnesses on fiscal year 2020 funding. National PTA and the
PACER Center, two of the Nation's leading family engagement
organizations, respectfully request that the Subcommittee include $15
million for the Statewide Family Engagement Centers (SFECs) grant
program in fiscal year 2020 funding legislation. National PTA is the
oldest and largest volunteer child advocacy association in the United
States with 3.5 million PTA members working to make every child's
potential a reality by engaging and empowering families and communities
to advocate for all children. Since 1977, PACER Center, a nationwide
parent engagement center, has enhanced the quality of life and expanded
opportunities for children, youth and young adults by ensuring that
families have the tools to help their children succeed in school and
life.
In addition to our support of additional resources for the SFEC
program, we recognize that non-defense discretionary (NDD) funding for
fiscal year 2020 will be cut by $55 billion if caps under the Budget
Control Act are not raised. While strongly advocating for this
increase, we also urge Congress to first reach a new budget agreement
to avert these cuts and increase NDD funding levels over fiscal year
2019. This budget deal and an increase in the spending caps is vital to
being able to provide $15 million for this program.
Our organizations request $15 million in funding for the U.S.
Department of Education's SFECs grant program for fiscal year 2020.
This investment comes after Congress provided $10 million in fiscal
year 2019 and the House (L-HHS-ED) Subcommitte approved $15 milllion
for this program in their fiscal year 2020 bill, an increase of $5
million over fiscal year 2019. To date, families and educators in 13
States have access to the services these centers provide and are
beginning to benefit from the impact of their work on schools,
families, and most importantly children. An increase of $5 million over
fiscal year 2019 would allow additional States to be awarded grants,
which depending on grant size, could increase the total number of
States to nearly 20. We very much appreciate the Subcommittee's
leadership in providing funding in fiscal year 2019 and ask you to
provide this vital increase for fiscal year 2020.
Our organizations support high-quality public education that
ensures families are engaged in their child's education. More than 40
years of research shows--regardless of a family's income or
socioeconomic background--students with engaged families attend school
more regularly, earn better grades, enroll in advanced-level programs
and have higher graduation rates.\1\ Additionally, teachers are more
likely to remain in schools where families are involved and where they
develop trusting relationships.\2\ Additonal research has shown that a
school's approach to family engagement is equally as important in
predicting its improvement as having a great principal, investing in
strong teachers and curriculum, and using student-centered approaches
to discipline.\3\
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\1\ Henderson, A. T., & Mapp, K. L. (2002). A New Wave of Evidence:
The Impact of School, Family, and Community Connections on Student
Achievement. Annual Synthesis 2002. National Center for Family and
Community Connections with Schools. Retrieved from https://
www.sedl.org/connections/resources/evidence.pdf.
\2\ Allensworth, E, S. Ponisciak, and C. Mazzeo. (2009). The
Schools Teachers Leave: Teacher Mobility in Chicago Public Schools.
Chicago, IL: Consortium on Chicago School Research at the University of
Chicago Urban Education Institute. Retrieved from https://
consortium.uchicago.edu/sites/default/files/publications/
CCSR_Teacher_Mobility.pdf.
\3\ Bryk, et al. (2010). Organizing Schools for Improvement:
Lessons from Chicago. Chicago: University of Chicago Press.
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An fiscal year 2020 $15 million investment in the SFECs program
will allow expansion of the number of States receiving grants and
further build capacity for States and school districts to
systematically embed family engagement policies and practices in their
education plans. With this appropriation, centers will provide much
needed professional development for educators and school leaders to
strengthen school-family partnerships and parent-teacher relationships.
This additional investment will also provide direct services to
families to give them the tools to effectively work with their child's
school to improve their child's academic outcomes and overall well-
being.
School leaders and parents need the resources that SFECs can
provide to engage parents as stakeholders and effectively implement
ESSA as Congress intended. We are encouraged by the significant
increase provideded in the House (L-HHS-ED) bill and urge the Senate
Subcommittee to also include $15 million for the Statewide Family
Engagement Centers program in the fiscal year 2020 Senate L-HHS-ED
appropriations bill.
We appreciate your consideration of this request and are happy to
follow up on any questions you may have.
[This statement was submitted by Nathan R. Monell, CAE, Executive
Director, National PTA, and Paula F. Goldberg, Executive Director,
PACER Center.]
______
Prepared Statement of the National Respite Coalition
Mr. Chairman, I am Jill Kagan, Chair, National Respite Coalition
(NRC), which is a network of state respite coalitions, respite
providers, family caregivers, and national, State and local
organizations that support respite. We are requesting that the
Subcommittee include $20 million for the Lifespan Respite Care Program
administered by the Administration for Community Living, Department of
Health and Human Services, in the fiscal year 2020 Labor, HHS, and
Education Appropriations bill. This modest increase will enable:
--State replication of Lifespan Respite best practices to allow
family caregivers, regardless of the care recipient's age or
disability, to have access to affordable respite.
--Improvement in respite quality and expansion of respite capacity;
and
--Greater consumer direction by providing family caregivers with
training and information on how to find, use and pay for both
formal and informal respite services.
Respite Care Saves Money and Benefits Families
Compelling budgetary benefits accrue because of respite. Delaying a
nursing home placement for individuals with Alzheimer's or avoiding
hospitalization for children with autism can save Medicaid billions of
dollars. Researchers at the University of Pennsylvania studied the
records of 28,000 children with autism enrolled in Medicaid in 2004.
They concluded that for every $1,000 States spent on respite, there was
an 8 percent drop in the odds of hospitalization (Mandell, et al.,
2012). A U.S. Department of Health and Human Services report found that
reducing key stresses on caregivers through services such as respite
would reduce nursing home entry (Spillman and Long, USDHHS, 2007).
Additional research has corroborated the role that respite may play in
reducing or delaying facility-based placements (Gresham, 2018; Avison,
et al., 2018). Respite may reduce administrative burdens and improve
maternal employment (Caldwell, 2007), strengthen marriages (Harper,
2013), and significantly reduce caregiver depression, stress and burden
levels linked to caregiver health (Broady and Aggar, 2017; Lopez-
Hartmann, et al., 2012; Zarit, et al., 2014). In a survey of caregivers
of individuals with Multiple Sclerosis, two-thirds said that respite
would help keep their loved one at home. When the care recipient with
MS also has cognitive impairment, the percentage of those saying
respite would be helpful to avoid or delay nursing home placement
jumped to 75 percent (NAC, 2012).
With at least two-thirds (66 percent) of family caregivers in the
workforce (Matos, 2015), U.S. businesses lose from $17.1 to $33.6
billion per year in lost productivity of family caregivers (MetLife
Mature Market Institute, 2006). Higher absenteeism among working
caregivers costs the U.S. economy an estimated $25.2 billion annually
(Witters, 2011). The University of NE Medical Center conducted a survey
of caregivers receiving respite through the NE Lifespan Respite Program
and found that 36 percent of family caregivers reported not having
enough money at the end of the month to make ends meet, but families
overall reported a better financial situation when receiving respite
(Johnson, J., et al., 2018).
Who Needs Respite?
More than 43 million adults in the U.S. are family caregivers of an
adult or a child with a disability or chronic condition (National
Alliance for Caregiving (NAC). The estimated economic value of family
caregiving of adults alone is approximately $470 billion annually
(Reinhard, et al., 2015). Eighty percent of those needing long-term
services and supports (LTSS) are living at home. Two out of three (66
percent) older people with disabilities who receive LTSS at home get
all their care exclusively from family caregivers (Congressional Budget
Office, 2013).
Immediate concerns about how to provide care for a growing aging
population are paramount. However, caregiving is a lifespan issue with
the majority of family caregivers caring for someone between the ages
of 18 and 75 (53 percent) (NAC, 2015). In addition, the 2017 National
Survey of Children's Health found that 13.3 million children under age
18 have special healthcare needs (Child and Adolescent Health
Measurement Initiative, 2019).
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, 85 percent of family caregivers of adults are not receiving
respite services at all (NAC, 2015). Nearly half of family caregivers
of adults (44 percent) identified in the National Study of Caregiving
were providing substantial help with healthcare tasks. Of this group,
despite their high level of care, fewer than 17 percent used respite
(Wolff, et al., 2016). A 2014 Rand Corporation report prepared for the
Elizabeth Dole Foundation, Hidden Heroes: America's Military
Caregivers, recommended that more appropriate community-based respite
care should be more widely available to military caregivers (Ramchand,
et al., 2014).
Respite Barriers and the Effect on Family Caregivers
While most families want to care for family members at home, and
many family caregivers rate their caregiving experiences as positive,
research shows that family caregivers are at risk for emotional,
mental, and physical health problems (Population Reference Bureau,
2016; American Psychological Association, 2012; Spillman, J., et al.,
2014). When caregivers lack effective coping styles or are depressed,
care recipients may be at risk for falling, developing preventable
secondary health conditions or limitations in functional abilities. The
risk of care recipient abuse increases when caregivers are depressed or
in poor health (American Psychological Association, nd). Parents of
children with special healthcare needs report poorer general health,
more physical health problems, worse sleep, and increased depressive
symptoms compared to parents of typically developing children (McBean,
A, et al., 2013).
Respite, that has been shown to ease family caregiver stress, is
too often out of reach or completely unavailable. In a survey of more
than 3000 caregivers of individuals with intellectual and developmental
disabilities (ID/DD), nine in ten reported that they were stressed.
Nearly half (49 percent) reported that finding time to meet their
personal needs was a major problem. Yet, more than half of the
caregivers of individuals with ID (52 percent), Autism Spectrum
Disorder (ASD) (56 percent) or ID and ASD (60 percent) reported that it
was difficult or very difficult to find respite care (Anderson, L., et
al., 2018). Despite their higher burden of care, caregivers of persons
with dementia are more prone to underutilizing and/or delaying respite.
The 2013 Johns Hopkins Maximizing Independence at Home Study, in which
researchers surveyed persons with dementia residing at home with their
family caregivers, found that nearly half of the caregivers had unmet
needs for mental healthcare and most of these, needed emotional support
or respite care (Black, B, et al., 2013). Respite may not exist at all
for children with autism, adults with ALS, MS, spinal cord or traumatic
brain injuries, or individuals with serious emotional conditions.
Barriers to accessing respite include fragmented and narrowly
targeted services, cost, and the lack of information about respite or
how to find or choose a provider. Moreover, a critically short supply
of well-trained respite providers may prohibit a family from making use
of a service they so desperately need.
Lifespan Respite Care Program
The Lifespan Respite Care Program, designed to address these
barriers to respite quality, affordability and accessibility, is a
competitive grant program administered by the Administration for
Community Living (ACL) in its Center for Integrated Programs. The
premise behind the program is both care relief and cost effectiveness.
Lifespan Respite provides funding to States to expand and enhance local
respite services across the country, coordinate community-based respite
services to reduce duplication and fragmentation, improve coordination
with other community resources, and improve respite access and quality.
Under the program, States are required to establish statewide
coordinated Lifespan Respite care systems to serve families regardless
of age or special need, provide new planned and emergency respite
services, train and recruit respite workers and volunteers, and assist
caregivers in gaining access. Family members, foster parents or other
adults providing unpaid care to adults who require care to meet basic
needs or prevent injury and to children who require care beyond basic
needs are eligible.
To date, 37 States and the District of Columbia have received basic
grants to build coordinated systems of community-based respite
services. Many of these States have also received follow on grants to
provide or expand direct services, to address the direct care worker
shortage by recruiting and training respite workers, to integrate
respite into statewide long-term services and support and No Wrong Door
systems, to recruit and train respite workers, and to develop long-term
sustainability plans.
How is Lifespan Respite Program Making a Difference?
In describing the Lifespan Respite Care Program, a distinguished
panel from the National Academies of Sciences, Engineering, and
Medicine recently concluded in the report Families Caring for an Aging
America, ``Although the program is relatively small, respite is one of
the most important caregiver supports.'' With limited funds, Lifespan
Respite grantees are engaged in innovative activities:
--AL, AZ, CO, DE, IL, MD, MT, NE, NV, NC, OK, RI, SC, TN, VA, WI and
WA, have successfully used consumer-directed respite vouchers
for serving underserved populations often not eligible for
other public programs, including individuals with traumatic
brain injury, MS or ALS, adults with intellectual or
developmental disabilities (I/DD), children with autism or
special medical needs, rural caregivers or those on waiting
lists for services.
--States are reporting positive family caregiver outcomes. 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 CO, MA, NC,
NY, OH, PA, and SC through mini-grants to community-based
agencies, have documented caregiver benefits.
--AL, IL, MD, and NE offer emergency respite support and AL, AR, CO,
NE, NY, PA, RI, SC and TN are providing new volunteer or faith-
based respite services.
--Respite provider recruitment and training are priorities in AR, CO,
NE, NV, NY, SC, VA, and WI.
Partnerships between State agencies are changing the landscape.
Lifespan Respite WA, housed in WA's Aging & Long-Term Support
Administration, partnered with WA's Children with Special Health Care
Needs Program to provide respite vouchers to families across ages and
disabilities. The WA Lifespan Respite grantee also partnered with
Tribal entities to provide respite to kinship caregivers. The OK
Lifespan Respite program partnered with the State's Transit
Administration to develop mobile respite to serve isolated rural areas
of the State. States are building respite registries and ``no wrong
door systems'' in partnership with Aging and Disability Resource
Centers/No Wrong Door systems to help family caregivers access respite
and funding sources. Funding must be increased to help sustain these
innovative State efforts and expand grants to new States. States are
developing long-term sustainability plans, but without Federal support,
many of the grantees will lose funding.
Funding Levels
Congress initially passed the Lifespan Respite Care Program in a
bipartisan manner and the program maintains strong, bipartisan support
in Congress. The program was authorized at $50 million/year based on
the magnitude of our Nation's family caregivers' needs, but Congress
first appropriated only $2.5 million from fiscal year 2009 through
fiscal year 2012. The program received slightly less funding in fiscal
year 2013-fiscal year 2015 due to sequestration. In fiscal year 2016,
given the strong bipartisan support for the program, Congress increased
appropriations by $1 million to $3.36 million. This allowed six of the
current grantees to receive 1 year expansion grants to provide direct
services to unserved groups and provided first-time awards to Maryland
and Mississippi. For fiscal year 2017, the program was once again
funded at $3.36, permitting funding of two new States (ND and SD) and
enabling 12 grantees to continue their ground-breaking work to serve
more families. An increase in funding to $4.1 million in fiscal year
2018 and fiscal year 2019 allowed an additional four States to
implement their Lifespan Respite grant activities. In April, the
Lifespan Respite Care Reauthorization Act of 2019 was introduced in the
House by Reps. Jim Langevin (D-RI) and Rep. Cathy McMorris Rodgers (R-
WA) in the Senate by Senators Susan Collins (R-ME) and Tammy Baldwin
(D-WI). With continued bipartisan support, the bill authorizes $200
million over 5 years.
No other Federal program has respite as its sole focus. The
Lifespan Respite Care Program is the only Federal program that helps
ensure respite quality and choice, funds respite start-up, provider
recruitment and training, and coordination, and addresses accessibility
and affordability issues for families regardless of the care
recipient's age or disability. We urge you to include $20 million in
the fiscal year 2020 Labor, HHS, and Education appropriations bill.
This is the amount authorized in the newly introduced Lifespan Respite
Reauthorization bill. Families will be able to keep loved ones at home,
saving Medicaid and other Federal programs billions of dollars.
For more information, please contact Jill Kagan, National Respite
Coalition at [email protected]. References available on request.
[This statement was submitted by Jill Kagan, Chair, National
Respite Coalition.]
______
Prepared Statement of the NephCure Kidney International
summary of recommendations for fiscal year 2020
_______________________________________________________________________
--Provide $41.6 billion for the National Institutes of Health (NIH)
--Provide a proportional increase for the National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK) and the
National Institute on Minority Health and Health Disparities
(NIMHD) and support the expansion of the FSGS/NS research
portfolio at NIDDK and NIMHD by funding more research into
primary glomerular disease.
_______________________________________________________________________
Chairman Blunt and Ranking Member Murray, thank you for the
opportunity to present the views of NephCure Kidney International
regarding research on idiopathic focal segmental glomerulosclerosis
(FSGS) and primary nephrotic syndrome (NS). NephCure is the only non-
profit organization exclusively devoted to fighting FSGS and the NS
disease group. Driven by a panel of respected medical experts and a
dedicated band of patients and families, NephCure works tirelessly to
support kidney disease research and awareness.
NS is a collection of signs and symptoms caused by diseases that
attack the kidney's filtering system. These diseases include FSGS,
Minimal Change Disease and Membranous Nephropathy. When affected, the
kidney filters leak protein from the blood into the urine and often
cause kidney failure, which requires dialysis or kidney
transplantation. According to a Harvard University report, 73,000
people in the United States have lost their kidneys as a result of
FSGS. Unfortunately, the causes of FSGS and other filter diseases are
poorly understood.
FSGS is the second leading cause of NS and is especially difficult
to treat. There is no known cure for FSGS and current treatments are
difficult for patients to endure. These treatments include the use of
steroids and other dangerous substances which lower the immune system
and contribute to severe bacterial infections, high blood pressure and
other problems in patients, particularly child patients. In addition,
children with NS often experience growth retardation and heart disease.
Finally, NS that is caused by FSGS, MCD or MN is idiopathic and can
often reoccur, even after a kidney transplant.
FSGS disproportionately affects minority populations and is five
times more prevalent in the African American community. In a
groundbreaking study funded by NIH, researchers found that FSGS is
associated with two APOL1 gene variants. These variants developed as an
evolutionary response to African sleeping sickness and are common in
the African American patient population with FSGS/NS. Researchers
continue to study the pathogenesis of these variants.
FSGS has a large social impact in the United States. FSGS leads to
end-stage renal disease (ESRD) which is one of the most costly chronic
diseases to manage. In 2008, the Medicare program alone spent $26.8
billion, 7.9 percent of its entire budget, on ESRD. In 2005, FSGS
accounted for 12 percent of ESRD cases in the U.S., at an annual cost
of $3 billion. It is estimated that there are currently approximately
20,000 Americans living with ESRD due to FSGS.
Research on FSGS could achieve tremendous savings in Federal
healthcare costs and reduce health status disparities.
encourage fsgs/ns research at nih
There is no known cause or cure for FSGS and scientists tell us
that much more research needs to be done on the basic science behind
FSGS/NS. More research could lead to fewer patients undergoing ESRD and
tremendous savings in healthcare costs in the United States. NephCure
works closely with NIH and has partnered with NIH on two large studies
that will advance the pace of clinical research and support precision
medicine. These studies are the Nephrotic Syndrome Study Network and
the Cure Glomerulonephropathy Network.
With collaboration from other Institutes and Centers, ORDR
established the Rare Disease Clinical Research Network. This network
provided an opportunity for NephCure Kidney International, the
University of Michigan, and other university research health centers to
come together to form the Nephrotic Syndrome Study Network (NEPTUNE).
Now in its second 5-year funding cycle, NEPTUNE has recruited over 450
NS research participants, and has supported pilot and ancillary studies
utilizing the NEPTUNE data resources. NephCure urges the subcommittee
to continue its support for RDCRN and NEPTUNE, which has tremendous
potential to facilitate advancements in NS and FSGS research.
NIDDK houses the Cure Glomerulonephropathy Network (Cure GN), a
multicenter 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
Cure Glomeruloneuropathy [CureGN] initiative has accomplished towards
further understanding rare forms of kidney diseases. It is estimated
that annually there are 20 new cases of ESRD per million African
Americans due to FSGS, and 5 new cases per million Caucasians. This
disparity is largely due to variants of the APOL1 gene. Unfortunately,
the incidence of FSGS is rising and there are no known strategies to
prevent or treat kidney disease in individuals with the APOL1 genotype.
NIMHD began supporting research on the APOL1 gene in fiscal year 2013.
Due to the disproportionate burden of FSGS on minority populations, it
remains appropriate for NIMHD to continue to advance this research.
NephCure asks the subcommittee to recognize the work that NIMHD and
NIDDK are doing to address the connection between the APOL1 gene and
the onset of FSGS and encourage NIMHD to work with community
stakeholders to identify areas of collaboration.
As a result of the important research done through NIH we have been
able to work with FDA to establish new endpoints for clinical trial
leading to more trials than ever before. This has led to the creation
of the Kidney Health Gateway Clinical that will connect patients with
breakthrough clinical trials and access top Nephrotic Syndrome doctors
all in one place. These crucial trials will hopefully lead to more
treatment options for our patients.
patient perspective
My name is Kimberly Queen and I was diagnosed with Focal Segmental
Glomerulosclerosis (FSGS) in 2012 at the age of 25. At that time, I was
fulfilling my passion teaching Georgia State Pre-k when I received the
news; It was only my third-year teaching. After only 2 months of being
diagnosed and being prescribed 60mg of Prednisone, I went into septic
shock. Thankfully I was surrounded by amazing doctors who saved my
life. It was then that I realized it was time to fight this disease.
However, just as I was starting my fight, my kidneys failed in the
first 9 months. I am forever grateful to my brother who donated his
kidney to me on November 7, 2014, but with FSGS there is always a
chance of reoccurrence, which I saw firsthand shortly after when I
began spilling protein. During the two weeks I spent in the hospital,
we started putting together a game plan for how to put this awful
disease into remission. I began daily plasmapheresis along with taking
a blood pressure medication. We saw a little change but not enough.
It's now been 3 years since my reoccurrence. In that time, I have done
over three hundred plasmapheresis treatments, experimented with
different dosages of Prednisone, tried different blood pressure
medications, started using Acthar Gel and started Rituximab. I have
attained partial remission using the Acthar Gel, and we are hoping to
reach full remission with the Rituximab. More research is needed with
this disease so that myself, and others do not feel like ``test
subjects'' trying different medications and so there can be a higher
success rate. I would love to be able to live my life not focused
around doctor appointments, treatments and long infusions. Luckily, I
am surrounded by a family who understand and show FSGS has impacted my
life, as well as friends who support me and encourage me to stay strong
daily fighting a disease with no cure.
Thank you for the opportunity to present the views of the FSGS/NS
community.
[This statement was submitted by Irving Smokler, PH.D., President
and Founder, NephCure Kidney International.]
______
Prepared Statement of the Neurofibromatosis Network
Thank you for the opportunity to submit testimony to the
Subcommittee on the importance of funding for the National Institutes
of Health (NIH), and specifically for continued research on
Neurofibromatosis (NF), a genetic disorder closely linked to many
common diseases widespread among the American population. My name is
Kim Bischoff and I am the Executive Director of the Neurofibromatosis
(NF) Network, a national organization of NF advocacy groups. We
respectfully request that you include the following report language on
NF research at the National Institutes of Health within the Office of
the Director account in the fiscal year 2020 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 significant 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. NF1 can cause vision loss due to optic gliomas. The Committee
encourages NEI to expand its investment in NF1-focused research on
optic gliomas and vision restoration.
On behalf of the Neurofibromatosis (NF) Network, I speak on behalf
of the over 100,000 Americans who suffer from NF as well as
approximately 175 million Americans who suffer from diseases and
conditions linked to NF such as cancer, brain tumors, heart disease,
memory loss, and learning disabilities. Thanks in large part to this
Subcommittee's strong support, scientists have made enormous progress
since the discovery of the NF1 gene in 1990 resulting in clinical
trials now being undertaken at NIH with broad implications for the
general population.
NF is a genetic disorder involving the uncontrolled growth of
tumors along the nervous system which can result in terrible
disfigurement, deformity, deafness, pain, blindness, brain tumors,
cancer, and even death. In addition, approximately one-half of children
with NF suffer from learning disabilities. NF is the most common
neurological disorder caused by a single gene and is more common than
Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's disease
and Tay Sachs combined. There are three types of NF: NF1, which is more
common, NF2, which initially involves tumors causing deafness and
balance problems, and Schwannomatosis, the hallmark of which is severe
pain. While not all NF patients suffer from the most severe symptoms,
all NF patients and their families live with the uncertainty of not
knowing whether they will be seriously affected because NF is a highly
variable and progressive disease.
Researchers have determined that NF is closely linked to heart
disease, learning disabilities, memory loss, cancer, brain tumors, and
other disorders including deafness, blindness and orthopedic disorders,
primarily because NF regulates important pathways common to these
disorders such as the RAS, cAMP and PAK pathways. Research on NF
therefore stands to benefit millions of Americans.
learning disabilities/behavioral and brain function
Learning disabilities affect one-half of people with NF1. They
range from mild to severe and can impact the quality of life for those
with NF1. In recent years, research has revealed common threads between
NF1 learning disabilities, autism, and other related disabilities. New
drug interventions for learning disabilities are being developed and
will be beneficial to the general population. Research being done in
this area includes working to identify drugs that target Cyclic AMP, so
they can be paired with existing drugs targeting RAS. Identification of
new drug combinations may benefit people with multiple types of
learning disabilities.
bone repair
At least a quarter of children with NF1 have abnormal bone growth
in any part of the skeleton. In the legs, the long bones are weak,
prone to fracture and unable to heal properly; this can require
amputation at a young age. Adults with NF1 also have low bone mineral
density, placing them at risk of skeletal weakness and injury. Research
currently being done to understand bone biology and repair will pave
the way for new strategies to enhancing bone health and facilitating
repair.
pain management
Severe pain is a central feature of Schwannomatosis, and
significantly impacts quality of life. Understanding what causes pain,
and how it could be treated, has been a fast-moving area of NF research
over the past few years. Pain management is a challenging area of
research and new approaches are highly sought after.
nerve regeneration
NF often requires surgical removal of nerve tumors, which can lead
to nerve paralysis and loss of function. Understanding the changes that
occur in a nerve after surgery, and how it might be regenerated and
functionally restored, will have significant quality of life value for
affected individuals. Light-based therapy is being tested to dissect
nerves in surgery of tumor removal. If successful it could have
applications for treating nerve damage and scarring after injury,
thereby aiding repair and functional restoration.
cancer
NF can cause a variety of tumors to grow, which includes tumors in
the brain, spinal cord and nerves. NF affects the RAS pathway which is
implicated in 70 percent of all human cancers. Some of these tumor
types are benign and some are malignant, hard to treat and often fatal.
Previous studies have found a high incidence of intracranial
glioblastomas and malignant peripheral nerve sheath tumors (MPNSTs), as
well as a six-fold incidents of breast cancer compared to the general
population. One of these tumor types, malignant peripheral nerve sheath
tumor (MPNST), is a very aggressive, hard to treat and often fatal
cancer. MPNSTs are fast growing, and because the cells change as the
tumor grows, they often become resistant to individual drugs. Clinical
trials are underway to identify a drug treatment that can be widely
used in MPNSTs and other hard-to-treat tumors.
The enormous promise of NF research, and its potential to benefit
over 175 million Americans who suffer from diseases and conditions
linked to NF, has gained increased recognition from Congress and the
NIH. This is evidenced by the fact that numerous institutes are
currently supporting NF research, and NIH's total NF research portfolio
has increased from $3 million in fiscal year 1990 to an estimated $31
million in fiscal year 2019. Given the potential offered by NF research
for progress against a range of diseases, we are hopeful that the NIH
will continue to build on the successes of this program by funding this
promising research and thereby continuing the enormous return on the
taxpayers' investment.
We appreciate the Subcommittee's strong support for the National
Institutes of Health and will continue to work with you to ensure that
opportunities for major advances in NF research at the NIH are
aggressively pursued. Thank you.
______
Prepared Statement of New Leaders
Thank you for the opportunity to provide testimony regarding the
fiscal year 2020 Labor, Health and Human Services, Education, and
Related Agencies Appropriations bill.
New Leaders is a national nonprofit organization dedicated to
ensuring high academic achievement for all children, especially
students in poverty and students of color, by developing
transformational school leaders and advancing the policies and
practices that allow great leaders to succeed. Since 2000, we have
trained 3,900 outstanding school leaders who annually reach nearly half
a million students in partnership with more than 30 districts and 150
charter schools. Moreover, our leaders overwhelmingly work on behalf of
historically underserved students: 78 percent of students served are
low-income and 87 percent are children of color. In addition, our
programs are evidence-based. Multiple independent studies have found
that students who attend New Leader schools outperform their peers by
statistically significant margins specifically because of the strong
leadership of their New Leader principal.\1\ And a recent review of
school leadership interventions cited New Leaders as the principal
preparation program with the strongest evidence of positive impact on
student achievement.\2\
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\1\ Gates, S.M., Baird, M.D., Doss, C.J., Hamilton, L.S., Opper,
I.M., Master, B.K., Tuma, A.P., Vuollo, M., Zaber, M.A., (2019).
Preparing School Leaders for Success Evaluation of New Leaders'
Aspiring Principals Program, 2012-2017. RAND Corporation RR-2812-NL.
Gates, S., Hamilton, L., Martorell, P., et. al. (2014). Preparing
Principals to Raise Student Achievement: Implementation and Effects of
the New Leaders Program in Ten Districts. The RAND Corporation.
Retrieved from http://www.rand.org/pubs/research_reports/RR507.html.
\2\ Herman, R., Gates, S. M., Chavez-Herrerias, E. R., and Harris,
M. (2016). School Leadership Interventions Under the Every Student
Succeeds Act (Volume I). The RAND Corporation. Retrieved from http://
www.rand.org/content/dam/rand/pubs/research_reports/RR1500/RR1550/
RAND_RR1550.pdf.
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New Leaders is committed to getting a well-prepared, well-supported
principal in every school so that our Nation's teachers and students
can thrive. We can reach this goal by paying more attention to how our
schools--not just individual classrooms, but all classrooms within a
school--are organized and led. More than a decade of research shows
that well-prepared, well-supported principals have a huge influence on
teacher practice and student success. School leaders account for 25
percent of a school's impact on student learning, \3\ and an above-
average principal can improve student achievement by 20 percentage
points.\4\ Moreover, outstanding school leaders attract and retain
great educators: fully 97 percent of teachers list principal quality as
critical to their retention and career decisions--more than any other
factor.\5\ And school leaders transform the lowest-performing schools,
where the positive effects of strong leadership on student achievement
are most pronounced.\6\ In fact, a landmark study found ``virtually no
documented instances of troubled schools being turned around without
intervention by a powerful leader.'' \7\
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\3\ Leithwood, K., Seashore Louis, K., Anderson, S., & Wahlstrom,
K. (2004). How leadership influences student learning: A review of
research for the Learning from Leadership Project. New York, NY: The
Wallace Foundation. Retrieved from http://www.wallacefoundation.org/
knowledge-center/Pages/How-Leadership-Influences-Student-Learning.aspx.
\4\ Marzano, R. J., Waters, T., & McNulty, B. A. (2005). School
leadership that works: From research to results. Alexandria, VA:
Association for Supervision and Curriculum Development.
\5\ Scholastic Inc. (2012). Primary Sources: America's Teachers on
the Teaching Profession. New York, NY: Scholastic and the Bill and
Melinda Gates Foundation. Retrieved from http://www.scholastic.com/
primarysources/pdfs/Gates2012_full.pdf.
\6\ Seashore Louis, K., Leithwood, K., Wahlstrom, K., & Anderson,
S. (2010). Investigating the links to improved student learning.
Washington, DC: Wallace Foundation. Retrieved from http://
www.wallacefoundation.org/knowledge-center/Pages/Investigating-the-
Links-to-Improved-Student-Learning.aspx.
\7\ Leithwood, K., Seashore Louis, K., Anderson, S., & Wahlstrom,
K. (2004).
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We were pleased that the Every Student Succeeds Act (ESSA)
maintained and strengthened the School Leader Recruitment and Support
Program (SLRSP). However, we were deeply dismayed to see funding for
SLRSP zeroed out in recent spending deals.
The School Leader Recruitment and Support Program (SLRSP) was
authorized under ESSA with bipartisan support and is the only Federal
program with an exclusive focus on evidence-based school leadership
interventions for high-need schools. SLRSP updates the School
Leadership Program (SLP), the program included in the previous version
of the Elementary and Secondary Education Act, and provides districts
with resources to develop and support dynamic leaders who have a
measurable, positive impact on student achievement. The program
empowers eligible entities--including State or local educational
agencies--to pursue a range of activities in support of school
leadership for high-need schools, such as the development and
implementation of leadership training programs, the provision of
ongoing professional development for school leaders, and the
dissemination of best practices regarding the recruitment and retention
of highly effective school leaders. In addition, eligible entities may
carry out projects in partnership with nonprofit organizations and
institutions of higher education. Finally, under priorities set forth
in the reauthorized statute, SLRSP incentivizes eligible entities to
focus on principal preparation and professional development practices
for which there is evidence of effectiveness, as demonstrated through
rigorous research.
As implementation of ESSA moves to the State, local, and school
levels, it is more important than ever that we ensure every school is
led by an outstanding principal-a focus that can lead to incredible
results for kids while representing a cost-effective use of Federal
resources. According to a national analysis, the average cost to
recruit, prepare, and hire a new principal is $75,000.\8\ Because 12
percent of principals leave the profession every year, replacing each
requires significant resources--upwards of $200 million for the
Nation's high-need schools. That same analysis found that the average
cost of principal support is $16,500--requiring more than $350 million
annually to mentor and support the leaders of high-need schools. Though
the need is great, investments in leadership are extremely cost-
effective: supporting one principal is actually an investment in the 25
teachers and 500 or more students that he or she, on average, supports.
In fact, a National Governors Association report describes how slightly
shifting the balance of educator investments toward principals is a
smart way to improve school working conditions to foster stronger
teaching and better outcomes for kids.\9\ Further, strategies to
address principal burnout, which disproportionately affects high-need
schools,\10\ can yield huge cost savings.\11\
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\8\ School Leaders Network. (2014). Churn: The High Cost of
Principal Turnover. Retrieved from http://connectleadsucceed.org/sites/
default/files/principal_turnover_cost.pdf#page=1&
zoom=auto,-15,792.
\9\ National Governors Association. (2015). Improving Educational
Outcomes: How State Policy Can Support School Principals as
Instructional Leaders. Washington, DC: National Governors Association.
Retrieved from https://www.nga.org/files/live/sites/NGA/files/pdf/2015/
1506
SupportingPrincipals.pdf.
\10\ According to 2014 data from the National Center for Education
Statistics, high-need schools must also grapple with an overall
principal turnover rate of 28 percent, significantly higher than
schools in more affluent communities.
\11\ According to School Leaders Network (2014), up to $330,000
annually for a typical urban district.
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The Federal Government has a crucial role to play in advancing
innovation and sharing best practices with the field so that State and
local leadership strategies, especially for high-need schools, can be
strengthened, now and in the future, by a strong and growing evidence
base. The SLP helped launch and expand some of the country's most
innovative and effective leadership development programs, including New
Leaders, New Teacher Center, NYC Leadership Academy, and TNTP. Since
receiving SLP grants, these organizations have grown exponentially to
reach many more schools, teachers, and students in high-need
communities--greatly expanding the impact of the Federal Government's
initial investment. Further, SLP grantees, including those affiliated
with the University Council of Educational Administrators (UCEA), have
demonstrated a remarkable commitment to programmatic evaluation,
continuous improvement, and transparency. By proactively sharing their
lessons and resources open-source with the field, these organizations
have helped to galvanize dramatic changes to the principal preparation
sector as a whole \12\--inspiring necessary changes to the way
principals are trained to lead our Nation's schools in States and
districts across the country.
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\12\ University Council for Educational Administration and New
Leaders. (2016). State Evaluation of Principal Preparation Programs
Toolkit. Retrieved from www.sepkit.org.
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It is worth noting that while there are other programs that can
support effective school leadership programs and strategies, the
reality is that leadership has historically been overlooked and
consistently underfunded. In fact, for the past several years more than
two-thirds of districts have invested zero Federal professional
development funds on school leaders.\13\ Without SLRSP, we lose a key
Federal lever for seeding the next generation of effective principal
development programs, promoting equity, advancing ongoing innovation,
and sharing cutting-edge school leadership lessons with the broader
field. It is absolutely crucial that we reinstate this dedicated
funding source.
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\13\ U.S. Department of Education (2015). Findings from the 2014-15
Survey on the Use of Funds Under Title II, Part A. U.S. Department of
Education (2014). Findings from the 2013-14 Survey on the Use of Funds
Under Title II, Part A. U.S. Department of Education (2013). Findings
from the 2012-13 Survey on the Use of Funds Under Title II, Part A. All
retrieved from http://www2.ed.gov/programs/teacherqual/resources.html.
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We urge Congress to restore funding for SLRSP at $14.5 million to
support innovative, evidence-based school leadership programs and
partnerships that promise a return for students, schools, and
communities that far exceeds this targeted investment.
Thank you for the opportunity to provide the views of New Leaders
on the fiscal year 2020 appropriations. If you would like to discuss
our recommendations, please do not hesitate to contact
[email protected].
[This statement was submitted by Jean Desravines, CEO, New
Leaders.]
______
Prepared Statement of the Nez Perce Tribe
Honorable Chairman and members of the Committee, the Nez Perce
Tribe (Tribe) would like to thank you for the opportunity to provide
recommendations to the Committee as it evaluates and prioritizes fiscal
year 2020 appropriations for programs within the Department of Labor,
Department of Health and Human Services, and the Department of
Education.
As with any government, the Tribe performs a wide array of work and
provides a multitude of services to its tribal membership as well as
the community at large. The Tribe has been a leader in education,
workforce development, and social services in this area and places a
high priority on these programs and the services they provide to
residents on the Nez Perce Reservation (Reservation). The Tribe relies
on specific Federal programs and grants to fund this important work
and, therefore, provides the following fiscal year 2020 appropriations
recommendations for these agencies.
The Tribe recommends $20 billion be provided for Title I, Part A of
the Every Student Succeeds Act Local Education Agency Grants. Rural
public schools on the Reservation use this funding to address the
obstacles low-income students face meeting academic standards.
The Tribe recommends $6.9 million be allocated for the State-Tribal
Education Partnership Program (STEP) authorized in Title VI, Part A,
Subpart 3 of the Every Student Succeeds Act. The Tribe is one of the
participants in the STEP which provides an avenue for States and tribes
to work together to improve and enhance education delivery and parent
involvement in areas with high populations of tribal students. The STEP
has been a success for the Tribe and continued funding is needed to
keep the program active.
The Tribe recommends the same amount be allocated in fiscal year
2020 as was allocated in fiscal year 2019 for Impact Aid, $1.446
billion. Impact Aid compensates school districts for Federal ownership
of lands within a district's tax base. Idaho Public Schools on the
Reservation rely heavily on Impact Aid dollars to provide education
services. For example, Impact Aid accounts for 30 percent of the budget
for the Lapwai School District. Without Impact Aid dollars, the school
will be forced to make significant reductions in staffing and resources
for students.
The Tribe recommends $10 million for Tribal Education Departments
which would complement the funding allocated to the Bureau of Indian
Affairs for these programs. This funding provides for the development
and implementation of education programs operated by tribes to assist
in the delivery of education services within a reservation.
The Tribe recommends the $10.063 billion provided for Head Start in
fiscal year 2019 be maintained for fiscal year 2020. Indian Head Start
needs to be fully funded as these programs play a vital role in school
readiness, child development, and early education for over 24,000
Native children. The Indian Head Start programs address the whole child
from a health, cultural, and education perspective. These programs
operate on slim budgets but provide extraordinary returns in ensuring
children are as prepared as possible to begin their education journey.
The Tribe recommends the fiscal year 2019 funding levels be
maintained in fiscal year 2020 for all Tribal Behavioral Health Grants
under the Substance Abuse and Mental Health Services Administration.
The grants address a wide range of mental health and substance abuse
issues such as youth suicide, opioid addiction, and methamphetamine
addiction that are prevalent on the Reservation and threaten to
overwhelm the Tribe's Social Services Department and health clinic. In
addition, the competitive grants and tribal set-asides provided for
promoting safe and stable families, child welfare services, and child
abuse prevention should be maintained at fiscal year 2019 levels as
well.
The Tribe appreciates the fiscal year 2019 funding of $50 million
to address the opioid crisis in Indian Country. However, this funding
pales in comparison to the $1.5 billion that has been provided to
States on this issue through the 21st Century Cures Act and fiscal year
2019 funding. The Tribe recommends funding to address opioid use and
its effects on communities be increased and also made available in
forms other than grants. Indian Country suffers from opioid addiction
at a higher rate than most communities and all communities need access
to monies to help address this problem. Funding in the form of grants
places a high administrative burden on tribes and forces tribes to
compete against each other unnecessarily. Several members of Congress
have also voiced concern over such methodologies for tribal funding.
The Tribe recommends $60.5 million be allocated to the Department
of Labor's Division of Indian and Native American Programs, an increase
of $6 million over fiscal year 2019 funding. The Workforce Innovation
and Opportunity Act, Section 166 Indian and Native American Programs
serve the training and employment needs of tribes through programs such
as the Indian Employment, Training, and Related Services Demonstration
Act of 1992. The Tribe has used this funding to provide important
programs that have helped develop the workforce and economy on the
Reservation. This program has been very successful but will not
continue without funding.
The Tribe also recommends providing funding for the Public Service
Loan Forgiveness program (PSLF). The PSLF was established with the
passage of the College Cost Reduction and Access Act of 2007, and was
created to encourage individuals to enter lower-paying but vitally
important public sector jobs such as military service, law enforcement,
public education, and public health professions. The PSLF allows
eligible borrowers to qualify for forgiveness of the remaining balance
of their William D. Ford Federal Direct Loan Program loans after they
have served full time at a public service organization for at least 10
years, while making 120 qualifying payments. The PSLF has shown to be a
valuable tool for tribal governments in the recruitment of employees
and an important resource for students to address educational debt
while serving in jobs that may not be as financially lucrative as
positions in the private sector. Most tribes are located in rural areas
and face challenges in recruiting and retaining employees. This program
has been useful in that regard and the Tribe recommends the program not
be eliminated.
Thank you for your consideration of the Tribe's requests with
respect to these fiscal year 2020 appropriations.
______
Prepared Statement of the Northwest Portland
Area Indian Health Board
Greetings Chairman Blunt and Ranking Member Murray and Members of
the Subcommittee. My name is Andy Joseph, Jr., and I serve as Chairman
of the Northwest Portland Area Indian Health Board (NPAIHB), Vice Chair
on the Colville Business Council, and Co-Chair of the IHS National
Tribal Budget Formulation Workgroup. I thank you for this opportunity
to provide testimony on fiscal year 2020 appropriations to the Senate
Subcommittee on Labor, Health and Human Services, Education, and
Related Agencies for the Department of Health and Human Services (HHS).
Established in 1972, the NPAIHB is a Tribal organization
established under the Indian Self-Determination and Education
Assistance Act (ISDEAA), Public Law 93-638, advocating on behalf of the
43 federally-recognized Indian Tribes in Idaho, Oregon, and Washington
on specific healthcare issues. NPAIHB operates the Northwest Tribal
Epidemiology Center (NWTEC) and a variety of important health programs
on behalf of our member Tribes and national programs that serve Indian
country.
office of the secretary
Fund Minority HIV/AIDS Fund--formerly known as the Office of the
Secretary-Secretary's Minority AIDS Initiative Fund (SMAIF). Congress
appropriates an average of $50 million to the Office of the HHS
Secretary for General Department Management (GDM) to SMAIF. The HHS
Secretary delegates these funds to other agencies to be used for MAI-
related activities, which support programs that distinctly target
communities of color. In fiscal year 2018, $3.6 million (1.5 percent)
of SMAIF dollars were allocated to IHS for HIV/AIDS and HCV prevention,
treatment, outreach and education--out of the total $53.9 million of
SMAIF dollars. NPAIHB has several successful SMAIF projects:
STD/HIV/HCV GPRA Measurement: The project is monitoring STD/HIV
GPRA measures for IHS sites throughout Indian Country.
HCV-ECHO: The project works closely with I/T/U providers to screen,
manage and treat patients infected with HIV/AIDS and HCV within
existing systems I/T/U clinics Nation-wide.
Native Youth HIV Prevention and Outreach: We R Native is a
comprehensive, multimedia health resource for Native youth, by Native
youth. The service includes an interactive website (www.weRnative.org),
a text messaging service (Text NATIVE to 97779), a Facebook page, a
YouTube channel, Instagram, Twitter, and print marketing materials.
Special features include 100+ Youth Ambassadors and an ``Ask Auntie''
Question and Answer (Q&A) service.
Disseminating Effective Interventions: The website
www.HealthyNativeYouth.org is a one-stop-shop for Tribal health
advocates to access engaging, age-appropriate sexual health curricula
for AI/AN youth.
Continued appropriation to SMAIF and inclusion of Indian Country in
allocation of these dollars is necessary to maintain staffing,
capacity, and organizational infrastructure to address health
disparities for not only our Northwest Tribes, but also Tribes across
Indian Country. Any elimination of SMAIF funding for IHS will dissolve
almost all current HIV and HCV efforts and programs in Indian Country.
For fiscal year 2020, for SMAIF, NPAIHB recommends at least $57.5
million with at least $7.2 million to IHS.
Support National HIV and HCV Elimination Strategy. President Trump
announced in his State of the Union remarks a commitment to end HIV
transmissions within 10 years. NPAIHB supports a national effort to end
HIV but cautions that the plan will succeed only if it addresses all
people living with HIV and all people at risk of HIV. We urge the
Administration to provide concrete next steps for the plan to end HIV
transmission within 10 years that includes Tribes and AI/AN people.
While rates of new HIV diagnoses are not elevated in AI/AN compared to
some other race/ethnicities, there are notable concerns: (1) new HIV
diagnoses among AI/AN increased by 70 percent from 2011 to 2016; (2)
AI/AN patients have had the lowest survival rates of any race/ethnicity
after an AIDS diagnosis; and (3) both male and female AI/AN had the
highest percent of estimated diagnoses of HIV infection attributed to
injection drug use (IDU). In addition, most of Indian Country is rural,
where barriers to HIV education can exacerbate stigma, and reaching
specialists for HIV is more problematic than in an urban setting
(https://www.cdc.gov/hiv/pdf/group/racialethnic/aian/cdc-hiv-
natives.pdf). Given this data, NPAIHB recommends a significant increase
of HIV funding to Indian Country to increase Tribes' and Tribal
organizations' ability to maintain and increase ongoing HIV prevention,
treatment, and outreach efforts. Moreover, funding for ``Ending the HIV
Epidemic: A Plan for America'' should not be limited to jurisdiction 1
locations, and should be available to all Tribes and Tribal
organizations to end the HIV epidemic.
It is estimated that $600 million is needed to treat all AI/AN with
HCV served by an IHS, Tribal and urban Indian facility (I/T/U).
Therefore, NPAIHB recommends the ``Ending the HIV Epidemic: A Plan for
America'' should include $120 million for HCV (for 5 years) and $30
million for HIV for fiscal year 2020. These funds for HIV and HCV are
the minimum amount needed for clinical prevention, treatment and
management of HIV and HCV at I/T/U clinics and NPAIHB supports
retention of these funds at a national level for a coordinated effort
for treatment. Any funds needed for community level prevention,
outreach and education at the Tribal level would need an additional
allocation of funds.
centers for medicare and medicaid services
Oppose Medicaid State Block Grant and Per Capita Programs. NPAIHB
disagrees with the President's proposal for fiscal year 2020 to change
the Medicaid program to State block grants or a per-capita program.
This change would essentially shift the trust responsibility from the
Federal Government to States. This responsibility must remain with the
Federal Government to uphold treaty and trust obligations and ensure
that Tribes continue to receive Medicaid reimbursement. NPAIHB
recommends that I/T/Us be exempt from any Medicaid block grant or per
capita program.
Support Patient Protection and Affordable Care Act (ACA)/Indian
Health Care Improvement Act (IHCIA). The Patient Protection and
Affordable Care Act (ACA) has provided an incredible opportunity for
increased access to health insurance for Tribal members in our area.
Many Northwest Tribes implemented premium sponsorship programs for
their Tribal members. The increased access for AI/AN people to
healthcare through the Marketplaces has improved the health of many AI/
ANs, while the increase of third party revenue to I/T/Us has expanded
programs and services at I/T/Us. There are also several important
Indian-specific provisions in the ACA that are critical to the Indian
health system. Section 2901(b) ensures that I/T/Us are the payers of
last resort; Section 2901(c) simplifies eligibility determinations for
AI/AN enrolling in CHIP when seeking services from Indian providers;
Section 2902 authorizes I/T/Us reimbursement for Medicare Part B
services; and Title IX, Section 9021 ensures that health benefits
provided by a Tribe to Tribal members are not counted as taxable
income. In addition, IHCIA, permanently reauthorized under the ACA, has
created opportunities to improve access and financing of healthcare
services for AI/ANs. NPAIHB respectfully asks that HHS protect and
strengthen the ACA and IHCIA to ensure Tribes and AI/ANs continue to
reap the benefits of these laws.
substance abuse and mental health services administration
Increase Funding Tribal-Specific Programs. Northwest Tribes are
particularly concerned about our children and youth. Suicide is the
second leading cause of death for adolescents and young adults. In the
Portland Area, Tribes lack access to youth-focused prevention and
recovery services. For fiscal year 2020, we request increases to SAMHSA
Tribal programs: fund Tribal Behavioral Health Grant program at $50
million with $25 million for mental health and $25 million for
substance abuse (funded in fiscal year 2019 at $40 million--$20 for
mental health and $20 million for substance abuse); fund Garrett Lee
Smith Suicide Prevention Tribal Set Aside at $3.5 million (funded in
fiscal year 2019 at $2.9 million); fund Zero Prevention Initiative at
$3 million (funded in fiscal year 2019 at $2.2 million); and fund
Tribes under the National Child Traumatic Stress Initiative (NCTSI) at
$1.5 million ($1 million set aside in fiscal year 2019).
Continue Opioid Crisis and Funding. While NPAIHB appreciates the
$50 million set-aside for Tribes and Tribal organizations for Tribal
Opioid Response (TOR) funding and the $10 million set aside for
Medication Assisted Treatment (MAT) for Tribes, which is crucial for
Tribal clinics to administer MAT, it is not enough funding. We request
that SAMHSA continue SAMHSA TOR non-competitive funding for Tribes,
directly to Tribes and in parity with States, and increase funding term
to three to 5 years; increase TOR funding to $100 million in fiscal
year 2021 (funded at $50 million in fiscal year 2019); and increase
Tribal set-aside for MAT funding to $15 million (funded at $10 million
in fiscal year 2019). TOR funding must also be flexible to address
other and co-occurring substance use issues (alcohol, methamphetamines,
etc.) and mental health issues; and allow for prevention activities.
SAMHSA must reconsider TOR GPRA reporting for all Tribes and Tribal
organizations receiving SAMHSA TOR and MAT funding. The instrument is
lengthy and takes 35-45 minutes per patient to complete; and is
required to be completed with each patient at 0, 6 and 12 months for
MAT and other activities. This is a burden on staff of our Tribes and
Tribal organizations and impacts patient care. NPAIHB recommends that
GPRA reporting be optional, not mandatory, and consistent with IHS GPRA
reporting requirements for self-governance Tribes.
Support Comprehensive Funding for Other Substance Use Disorders.
Other substance use issues, including alcohol, methamphetamines, heroin
and other substances, not just opioids, continue to impact our
communities. Misuse of prescription opioids commonly leads to the use
of other drugs, such as heroin in Tribal communities. The National
Institute of Drug Abuse noted that 21 to 29 percent of patients
prescribed opioids for chronic pain misuse them, and 4 to 6 percent who
misuse prescription opioids transition to heroin. Furthermore, the
death rate for heroin overdoses among AI/ANs have dramatically
increased, rising 236 percent from 2010 to 2014.\1\ NPAIHB recommends
increased funding to prevent and address other substance use disorders
and/or flexibility in opioid funding to prevent and address co-occuring
substance use disorders and mental health issues.
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\1\ Dan Nolan and Chris Amico, How Bad is the Opioid
Epidemic?,PBS.org (Feb. 23, 2016), available at https://www.pbs.org/
wgbh/frontline/article/how-bad-is-the-opioid-epidemic/.
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Fund Tribal Epidemiology Centers. Thirty-four (34) Tribes in our
area are receiving TOR funding; and twenty-three (23) of the 34 Tribes
applied through the NPAIHB because they did not have enough time or
capacity to apply on their own. Many Tribes found the application to be
time-consuming, burdensome and were concerned that the funding was not
adequate to meet the TOR requirements. Our Tribes relied on our
Northwest Tribal Epidemiology Center (NWTEC) to coordinate the
consortium of 23 Tribes and to provide technical assistance which
Tribes funded through their TOR funds but there should be a specific
set-aside for Tribal Epidemiology Centers to coordinate consortiums and
to provide training and technical assistance. NPAIHB recommends set-
aside funding for Tribal Epidemiology Centers of $2.5 million for
administration of TOR consortiums and/or training and technical
assistance.
centers for disease control and prevention
Fund Good Health and Wellness in Indian Country (Under Racial and
Ethnic Approaches to Community Health (REACH)) at $32 million. The Good
Health and Wellness in Indian Country initiative supports efforts by
American Indian and Alaska Native communities to implement holistic and
culturally adapted approaches to reduce tobacco use, improve physical
activity and nutrition, and increase health literacy. NPAIHB recommends
that Good Health and Wellness in Indian Country program be funded at
$32 million for fiscal year 2020.
Include Tribes in HIV/HCV Funding Opportunities. The NPAIHB would
like to see base funding for HIV/HCV testing, prevention, and treatment
in Tribal communities. As sovereign nations, Tribes share a unique
relationship with the Federal Government. However, funding for HIV/HCV
prevention and education generally flows to States via block grants.
This system leaves many Tribes with limited resources, and forces
Tribes to compete with States for funding. Base funding for HCV in
Indian Country would further the goals of the U.S. National Viral
Hepatitis Action Plan for 2017-2020, which identifies AI/ANs as one of
the primary target populations for reducing new HCV infections and HCV-
related deaths. Base funding for HIV in Indian Country would support
Tribes and Tribal organizations to realize the ``Ending the HIV
Epidemic: A Plan for America.'' Therefore, NPAIHB recommends an
appropriation of direct, formula-based funding to Tribes and Tribal
organizations for HIV and HCV prevention, testing, and treatment for
fiscal year 2020.
Thank you for this opportunity to provide our recommendations on
the fiscal year 2020 HHS appropriations to the Senate Subcommittee on
Labor, Health and Human Services, Education, and Related Agencies for
the HHS. I invite you to visit our Portland Area Tribes to learn more
about the utilization of HHS funding and healthcare and social service
needs in our Area.\2\
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\2\ For more information, please contact Laura Platero, NPAIHB, at
[email protected].
[This statement was submitted by Andrew Joseph, Jr., Chairman,
Northwest Portland Area Indian Health Board.]
______
Prepared Statement of the Nursing Community Coalition
The Nursing Community Coalition is comprised of 62 national nursing
organizations who work together to advocate and advance healthcare
issues that impact education, research, practice, and regulation.
Collectively, the Nursing Community Coalition represent Registered
Nurses (RNs), Advanced Practice Registered Nurses (including Certified
Nurse-Midwives, Nurse Practitioners, Clinical Nurse Specialists, and
Certified Registered Nurse Anesthetists), nurse executives, nursing
students, faculty, and researchers, as well as other nurses with
advanced degrees. The Nursing Community Coalition respectfully requests
that Congress continues their strong investment in nursing education
and research in fiscal year 2020 by supporting $266 million for the
Nursing Workforce Development programs (authorized under Title VIII of
the Public Health Service Act [42 U.S.C. 296 et seq.]), administered by
the Health Resources and Services Administration (HRSA), and $173
million for the National Institute of Nursing Research (NINR), one of
the 27 Institutes and Centers within the National Institutes of Health
(NIH).
promoting america's health through nursing care
As the largest group of health professionals, with more than four
million licensed practitioners in the country, nurses are integral
members of the healthcare team.\1\ Nurses and other healthcare
professionals work together and consistently provide high-quality
patient-centered care in all communities, especially in rural and
underserved areas.
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\1\ National Council of State Boards of Nursing. (2019). Active RN
Licenses: A profile of nursing licensure in the U.S. as of April 5,
2019. Retrieved from: https://www.ncsbn.org/6161.htm.
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Title VIII Nursing Workforce Development programs help meet this
demand by connecting patients with care across a variety of settings,
including in community health centers, hospitals, long-term care
facilities, local and State health departments, schools, workplaces,
and patients' homes. A prime example is through Title VIII's Advanced
Nursing Education (ANE) program. In Academic Year 2016-2017, ANE
programs supported 10,537 students, including those in Advanced
Education Nursing Traineeships (AENT) and Nurse Anesthetist
Traineeships (NAT).\2\ In fact, 80 percent of AENT recipients received
training in primary care settings, and 75 percent of NAT recipients
were trained in medically-underserved areas.\3\
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\2\ Department of Health and Human Services fiscal year 2019 Health
Resources and Services Administration Justification of Estimates for
Appropriations Committees. https://www.hrsa.gov/sites/default/files/
hrsa/about/budget/budget-justification-fy2019.pdf.
\3\ Department of Health and Human Services fiscal year 2019 Health
Resources and Services Administration Justification of Estimates for
Appropriations Committees. https://www.hrsa.gov/sites/default/files/
hrsa/about/budget/budget-justification-fy2019.pdf.
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It is imperative that we continue to promote a diverse nursing
pipeline that reflects an increasingly diverse population, which
bolsters positive patient outcomes. Under the Title VIII Nursing
Workforce Diversity program, 4,416 students were trained in the 2016-
2017 Academic Year.\4\ All of these trainees, were from
underrepresented groups and/or from disadvantaged backgrounds.\5\
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\4\ Department of Health and Human Services fiscal year 2019 Health
Resources and Services Administration Justification of Estimates for
Appropriations Committees. https://www.hrsa.gov/sites/default/files/
hrsa/about/budget/budget-justification-fy2019.pdf.
\5\ Department of Health and Human Services fiscal year 2019 Health
Resources and Services Administration Justification of Estimates for
Appropriations Committees. https://www.hrsa.gov/sites/default/files/
hrsa/about/budget/budget-justification-fy2019.pdf.
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The Nursing Community respectfully requests $266 million for the
Title VIII Nursing Workforce Development programs in fiscal year 2020,
which include the following:
--Advanced Nursing Education Program (Sec. 811), including the
Advanced Education Nursing Traineeships and Nurse Anesthetist
Traineeships
--Nursing Workforce Diversity (Sec. 821)
--Nurse Education, Practice, Quality, and Retention (Sec. 831)
--NURSE Corps Loan Repayment and Scholarship Program (Sec. 846)
--Nurse Faculty Loan Program (Sec. 846A)
--Comprehensive Geriatric Education Program (Sec. 865)
Establishing Scientific Basis for Quality Patient Care:
For more than three decades, scientific endeavors funded at the
National Institute of Nursing Research (NINR) have been essential to
advancing the health of individuals, families, and communities. As one
of 27 Institutes and Centers at the National Institutes of Health
(NIH), NINR's research projects are aimed at reducing burdensome
chronic illness, improving end of life care, and promoting patient-
centered care across the life continuum. NINR's Strategic Plan includes
the themes of symptom science for patients with chronic illness and
pain; wellness to prevent illness across conditions, settings, and the
lifespan; patient self-management to improve quality of life; and end-
of-life and palliative care science.\6\ From disease prevention and
global health, to precision medicine and genomic studies, NINR is at
the forefront of nursing science and research and training new nurse
scientists to sustain the longevity and success of this important
endeavor.
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\6\ 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.
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The Nursing Community respectfully requests $173 million for the
NINR in fiscal year 2020.
We must continue to invest in the Title VIII Nursing Workforce
Development programs and NINR to strengthen the foundational care
nurses provide daily in communities across the country. Thank you for
your support of these crucial programs.
59 Members of the Nursing Community Coalition Submitting this Testimony
Academy of Medical-Surgical Nurses
American Academy of Ambulatory Care Nursing
American Academy of Emergency Nurse Practitioners
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 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 Neonatal Nurse Practitioners
National Association of Neonatal Nurses
National Association of Nurse Practitioners in Women's Health
National Association of Pediatric Nurse Practitioners
National Association of School Nurses
National Black Nurses Association
National Council of State Boards of Nursing
National Forum of State Nursing Workforce Centers
National League for Nursing
National Nurse-Led Care Consortium
National Organization of Nurse Practitioner Faculties
Nurses Organization of Veterans Affairs
Oncology Nursing Society
Organization for Associate Degree Nursing
Pediatric Endocrinology Nursing Society
Preventive Cardiovascular Nurses Association
Society of Pediatric Nurses
Society of Urologic Nurses and Associates
Wound, Ostomy and Continence Nurses Society
[This statement was submitted by Rachel Stevenson, Executive
Director, Nursing Community Coalition.]
______
Prepared Statement of One Voice Against Cancer
Fiscal year 2020 Appropriations for the National Institutes of
Health, the National Cancer Institute and the Division of Cancer
Prevention and Control at the Centers for Disease Control and
Prevention
Submitted for the record to the Senate Appropriations Subcommittee
on Labor, Health and Human Services, and Education and Related
Agencies--April 5, 2019
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.
The more than 200 diseases that we call ``cancer'' take a
tremendous toll on our Nation. It is estimated that more than 1.7
million people in the U.S. will be diagnosed with cancer this year.
Additionally, more than 606,000 Americans will die from the disease in
2019, which translates to more than 1,660 people a day. Recent
estimates show that cancer costs the U.S. economy more than $216
billion annually in direct treatment costs and lost productivity, a
number that will increase dramatically as incidence rates climb.
Additionally, it has been projected that 2.1 million people in the U.S.
will be diagnosed in 2030.
For the last 50 years, every major medical breakthrough in cancer
can be traced back to the National Institutes of Health (NIH) and the
National Cancer Institute (NCI). We know that investment in research at
the NIH and NCI leads to lives saved.
Because of the previous investment in cancer research, more than
15.5 million American cancer survivors are alive today, and we are
enjoying a quarter century of sustained declines in cancer mortality.
As of 2016, the cancer death rate for men and women combined has fallen
27 percent from its peak in 1991. This decline translates to about 1.5
percent per year and more than 2.6 million deaths avoided between 1991
and 2016.
Additionally, more than 80 percent of Federal funding for the NIH
and NCI is spent on biomedical research projects at local research
facilities across the country. In fiscal year 2018, the NIH provided
over $28 billion in extramural research to scientists in all 50 States
and the District of Columbia. NIH research funding also supported more
than 433,000 jobs and nearly $74 billion in economic activity last
year.
Thanks to your leadership, significant progress has been made to
reduce the loss of purchasing power experienced by the NIH and NCI
since fiscal year 2003, which marked the end of the five-year doubling
of NIH. However, NIH funding is still 8.4 percent less than what it
would have been if funding had simply kept up with biomedical
inflation.
With increases in Federal investment in medical research over the
last four fiscal years and the passage of the 21st Century Cures Act
that included funding for the National Cancer Moonshot Initiative,
Congress has demonstrated its bipartisan support for cancer research.
However, Moonshot funding is actually a small percentage of NCI's total
budget and in fiscal year 2020 the funding going to NCI for this
initiative will be cut almost in half, from $400 million in fiscal year
2019 to $195 million in fiscal year 2020. Even counting the Cancer
Moonshot, NCI's budget lags 15.6 percent, or $1.1 billion, below what
it would have been if funding had kept pace with biomedical inflation
since fiscal year 2003.
To continue the progress that has led to medical breakthroughs for
treatment and therapies for millions of cancer patients, NIH and NCI
need an increased, sustainable Federal investment. Therefore, OVAC
urges Congress to provide the NIH with at least a $41.6 billion in
fiscal year 2020. Additionally, we urge you to provide at least a $378
million increase for NCI, for a total of $6.522 billion, as reflected
in the Professional Judgment Budget Proposal for fiscal year 2020
provided to Congress by the NCI. (https://www.cancer.gov/about-nci/
budget/plan/)
Although great progress has been seen in the fight against cancer,
not all populations are benefitting from this progress. That's why the
Division of Cancer Prevention and Control (DCPC) at the Centers for
Disease Control and Prevention (CDC) continues to play a key role in
bringing evidence-based interventions developed by NIH and NCI to
underserved groups. This division provides vital resources to every
State for cancer monitoring and surveillance, State cancer control
planning and implementation, survivorship programs, and screening and
awareness initiatives targeting breast, cervical, skin, prostate,
colon, and ovarian cancers.
However, in sharp contrast to NIH, funding for the DCPC has
remained virtually flat for 9 years, rising just $1.2 million from
fiscal year 2010 ($370.3 million) to fiscal year 2019 ($371.5 million).
Congress has a rare opportunity to reverse this trend. OVAC urges
Congress to provide at least $555 million to CDC's evidence-based
cancer prevention and control programs, which are saving lives in
communities across the country.
Within the DCPC, OVAC requests at least $70 million, an increase of
$19 million, for the National Program of Cancer Registries (NPCR),
which provides technical, operational, and financial support for States
to manage cancer registries. The more accessible and usable registry
data is, the more impact it can have on public health. CDC is working
to enhance the use of NPCR cancer registry data through additional data
collection, expanded electronic reporting, and innovative public health
applications. Additional funding would allow the CDC to create a cloud-
based system that would record data in real time and eliminate the
current two-year lag in reporting.
Additionally, oncology nurses are on the front lines when it comes
to providing quality cancer care and contribute significantly to cancer
research. More funding for the Health Resources and Services
Administration's nurse training programs is necessary to support more
nursing scholarships and loan repayment applications and to address the
current and future nursing workforce shortage.
Below please find an overview of OVAC's program level requests:
National Institutes of Health (NIH)--$41.584 billion, including:
--National Cancer Institute (NCI)--$6.522 billion
--National Institute on Minority Health and Health Disparities
(NIMHD)--$331 million
--National Institute on Nursing Research (NINR)--$171 million
Centers for Disease Control and Prevention (CDC) Cancer Programs--$555
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--$11 million
--Gynecologic Cancer and Education and Awareness (Johanna's Law)--$12
million
--Cancer Survivorship Resource Center--$900,000
health resources and services administration
--Title VIII Nursing Programs--$266 million
Once again, thank you for your continued leadership on funding
issues important in the fight against cancer. Funding for cancer
research and prevention must continue to be top budget priorities in
order to increase the pace of progress in the fight against cancer.
OVAC once again calls on Congress to sustain our Nation's commitment to
cancer research and prevention by increasing support for these efforts.
______
Prepared Statement of Peel Ann D. deg.
Prepared Statement of Ann D. Peel
Mr. Chairman,
Amyloidosis is a rare and usually fatal disease. I ask that you
include language in the Committee's report for fiscal year 2020
recommending that the National Institutes of Health (NIH) expand its
research efforts into amyloidosis, a group of rare diseases
characterized by abnormally folded protein deposits in tissues. I also
ask that the Committee direct NIH to inform the Committee 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.
Your Committee over the years 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
increasing the awareness of this disease and many more people are
diagnosed and treated for amyloidosis than a decade ago.
However, there is no known cure for amyloidosis and the causes for
why amyloidosis occur remain elusive. I urge you to continue the
efforts of this Committee to help people with amyloidosis have hope for
the future.
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 16 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 16 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.
amyloidosis
I have been treated for primary amyloidosis, a blood or bone marrow
disorder.
Amyloidosis occurs when wrinkled or misfolded proteins form amyloid
fibrils and are deposited in organs, such as the heart, kidneys and
liver. These misfolded proteins clog the organs until they no longer
are able to function--sometimes at a very rapid pace.
Amyloidosis can cause heart, kidney, or liver dysfunction and
failure and severe neurologic problems. Left untreated, the average
survival is about 15 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.
In addition to primary amyloidosis, there are also thousands of
cases of inherited (familial) and age-related amyloidosis. The most
common familial type of amyloidosis was found to be caused by mutations
in a protein made in the liver. This is the form of amyloidosis that
may be present in a significant number of African-Americans.
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.
There is no explanation for how or why amyloidosis develops.
Although progress has been made in developing alternate forms of
treatment for amyloidosis, there is still no known reliable cure.
All of these types of amyloidosis, left undiagnosed or untreated,
are fatal.
amyloidosis treatment
The Amyloidosis Center at Boston University School of Medicine and
Boston Medical Center, and other centers for amyloidosis treatment,
have found that high dose intravenous chemotherapy followed by stem
cell transplantation is an effective treatment in selected patients
with primary amyloidosis. Abnormal bone marrow cells producing
amyloidogenic precursor protein 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 treatment of individuals identified with amyloidosis varies
with each patient. It depends on the type of amyloidosis, the specific
organ systems involved, and the extent of involvement. An exact course
of the disease is unpredictable. Some patients have achieved remission
of disease and major organ system improvement. Barring a cure for
amyloidosis, the current treatment goal is to provide a complete
remission and if not to induce a ``durable'' or long remission.
The high dose chemotherapy and stem cell transplantation and other
new drugs have increased the remission rate and long-term survival
dramatically. However, this treatment can also be life threatening and
more research needs to be done to provide less risky forms of
treatment.
research
Although funding is severely limited, researchers are moving
forward to develop targeted treatments that will specifically attack
the amyloid proteins.
The outlook is better each year as clinical research has led to
improvements in therapy, but more research and better diagnosis is
necessary to save thousands of lives. Only through more research is
there hope of further increasing the survival rate and finding
additional treatments to help more patients.
diagnosis
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.
current initiatives
Through the leadership of this Committee and the further
involvement of the U.S. Government, a number of 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.
request for fiscal year 2020
Mr. Chairman, 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 ask that the Committee, in its 2020 Committee
report, continue its strong support for increasing amyloidosis research
funding through NIH and to increase efforts to improve the diagnosis of
this life threatening 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.
Thank you for your consideration.
______
Prepared Statement of the Personalized Medicine Coalition
Chairman Blunt, Ranking Member Murray and distinguished members of
the subcommittee, the Personalized Medicine Coalition (PMC) appreciates
the opportunity to submit testimony on the National Institutes of
Health (NIH) fiscal year 2020 appropriations. PMC is a nonprofit
education and advocacy organization comprised of more than 230
institutions from across the healthcare spectrum. As the subcommittee
begins work on the fiscal year 2020 Labor, Health and Human Services,
Education and Related Agencies appropriations bill, we ask that the NIH
receive an appropriation of at least $41.6 billion in fiscal year 2020,
a $2.5 billion, or 6.4 percent, increase over fiscal year 2019 program
level funding. 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 NIH's base budget, as intended, through
dedicated funding for specific programs.
Personalized medicine, also called precision or individualized
medicine, is an evolving field in which physicians use diagnostic tests
to identify specific biological markers, often genetic, that help
determine which medical treatments will work best for each patient. By
combining this information with an individual's medical records,
circumstances, and values, personalized medicine allows doctors and
patients to develop targeted treatment and prevention plans.
Personalized healthcare promises to detect the onset of and pre-empt
the progression of disease as well as improve the quality,
accessibility, and affordability of healthcare.\1\
---------------------------------------------------------------------------
\1\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
Corporate/file/The-Personalized-Medicine-Report1.pdf.
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i. the role of nih in personalized medicine
The number of personalized medicines approved by the U.S. Food and
Drug Administration (FDA) annually has increased from 5 percent of new
drugs in 2005 \2\ to a record 42 percent in 2018.\3\ For each of the
past 4 years, personalized medicines have accounted for more than a
quarter of new drugs approved in the United States.\4\
Biopharmaceutical companies nearly doubled their R & D investment in
personalized medicines over the last 5 years, and expect to increase
their investment by an additional third over the next 5 years.\5\
Leading manufacturers have identified scientific discovery as the
biggest challenge facing personalized medicine, followed closely by
regulatory and reimbursement barriers.
---------------------------------------------------------------------------
\2\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
Corporate/file/The-Personalized-Medicine-Report1.pdf.
\3\ http://www.personalizedmedicinecoalition.org/Resources/
Personalized_Medicine_at_FDA_
An_Annual_Research_Report.
\4\ http://www.personalizedmedicinecoalition.org/Resources/
Personalized_Medicine_at_FDA_
An_Annual_Research_Report.
\5\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
Corporate/file/pmc-phrma-personalized-medicine-investment-21.pdf.
---------------------------------------------------------------------------
As the primary Federal agency conducting and supporting basic and
translational research investigating the causes, treatments and cures
for both common and rare diseases, NIH is leading scientific discovery
for personalized medicines. Many institutes and centers at the NIH are
supporting research that is informing the development of personalized
medicines, including the National Human Genome Research Institute
(NHGRI), the National Cancer Institute (NCI), The National Institute on
Aging (NIA) and the National Heart Lung and Blood Institute (NHIBI). An
increase for NIH in fiscal year 2020 would protect its foundational
role in the identification and development of personalized medicines.
ii. sustaining basic and translational research
Scientific discovery begins with basic research that gathers
fundamental knowledge about the genetic basis of a disease and with
translational research aimed at applying that knowledge to develop a
treatment or cure. Basic research has contributed to the development of
more than 130 personalized medicines on the market and available for
patients as of 2017.\6\ These include novel cancer immunotherapies that
harness a patient's immune system to fight cancer.\7\ This direction of
treatment was possible thanks to the decades of basic research to
understand how the immune system functions at the molecular level and
the genetic characteristics of specific cancer types. NCI-MATCH, a
phase 2 clinical trial, is now investigating whether targeted therapies
for people whose tumors have certain gene mutations will be effective
regardless of their cancer type. Patients from more than 1,100 cancer
centers and community hospitals in every State have enrolled in the
trial, and 62.5 percent of the first 6,000 patients enrolled had tumors
other than the four most common cancers: breast, colorectal, non-small
cell lung and prostate.\8\
---------------------------------------------------------------------------
\6\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
Corporate/file/The-Personalized-Medicine-Report1.pdf.
\7\ https://officeofbudget.od.nih.gov/pdfs/FY19/br/Overview.pdf.
\8\ https://www.nih.gov/news-events/news-releases/nci-match-
precision-medicine-clinical-trial-releases-new-findings-strengthens-
path-forward-targeted-cancer-therapies.
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Basic genomics research also offers opportunities beyond oncology,
especially for rare diseases. Rare diseases affect an estimated 25 to
30 million Americans, and with advances in genomics, the molecular
causes of 6,500 rare diseases have been identified. Sickle cell disease
(SCD), a rare disease that affects approximately 100,000 people in the
United States, is the first ``molecular disease.'' The molecular basis
of SCD was discovered decades ago but limited symptomatic treatments
are available to patients. Novel genetic approaches are now providing
hope for a SCD cure within 10 years. The NIH-launched Cure Sickle Cell
Initiative is advancing the most promising next-generation SCD
therapies and recently reported impressive results from one
experimental gene therapy.\9\
---------------------------------------------------------------------------
\9\ https://directorsblog.nih.gov/2018/12/11/accelerating-cures-in-
the-genomic-age-the-sickle-cell-example/.
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There are other people living with highly prevalent diseases that
are still in need of better treatments and a cure. The Alzheimer's
Association estimates that 5.8 million Americans are living with
Alzheimer's disease. Despite increasing numbers of Alzheimer's
diagnosis, there are no treatments that can prevent or alter the course
of the disease. Researchers are studying the genetic underpinnings of
Alzheimer's disease to more fully understand its complexity. In 2018,
an NIH-funded team of researchers reported that groups of genes
associated with specific biological processes are ``genetic hubs.''
These hubs are an important part of the disease process. This and other
large studies involving the NIH will continue to allow for better
prioritization of genes to target for treatment.\10\
---------------------------------------------------------------------------
\10\ https://www.nia.nih.gov/news/data-sharing-uncovers-five-new-
risk-genes-alzheimers-disease.
---------------------------------------------------------------------------
iii. accelerating personalized medicine research
The 21st Century Cures Act (Cures Act) provided support for
important initiatives that will benefit personalized medicine. The
first initiative, the All of Us\TM\ Research Program, launched in May
of 2018. All of Us is collecting genetic and health information from
one million volunteers for a decades-long research project. By August
15, 2018, nearly 100,000 individuals enrolled as participants. Almost
50 percent of those individuals were from groups historically
underrepresented in research, such as seniors, women, Hispanics and
Latinos, African Americans, Asian Americans and members of the LGBTQ
community.\11\ This program is creating an invaluable biomedical data
set that is inclusive of all Americans and will inform the development
of new personalized medicines.
---------------------------------------------------------------------------
\11\ https://www.nih.gov/about-nih/who-we-are/nih-director/
testimony-prioritizing-cures-science-stewardship-national-institutes-
health.
---------------------------------------------------------------------------
This year the NIH will begin a number of All of Us pilot projects
aimed at getting new types of data for the research community and
giving health information back to participants. For the research
community, we expect to see pilots related to genotyping, whole genome
sequencing, lab test assays, and wearable devices. All of Us will also
begin a pilot on the responsible return of information to participants
that will include their genomic information, genetic risk for disease,
medication response, and visualization of basic electronic health
record data. To further support All of Us participants, the NIH is
developing a mobile app and other educational resources about
developments in personalized medicine.\12\
---------------------------------------------------------------------------
\12\ https://allofus.nih.gov/sites/default/files/
dish_new_year.docx.
---------------------------------------------------------------------------
The Cancer Moonshot is the second initiative supported by the Cures
Act. It aims to transform the way cancer research is conducted. Because
of funding for the Cancer Moonshot, NIH was able to issue 17 Funding
Opportunity Announcements, including opportunities to support
immunotherapy networks that promise to discover new cancer treatments
for adults and children.\13\ In addition to funding research aimed at
improving cancer treatment, as part of the Cancer Moonshot the NCI was
able to make a resource publicly available on thousands of inherited
BRCA1 and BRCA2 gene variants. Certain inherited variants in these
genes can increase the risk of breast, ovarian, and other cancers by
varying degrees, whereas others are not associated with disease.
Clinicians and patients need to know whether a given variant is likely
to be disease-associated and how likely a variant is to cause cancer.
Until the NIH's BRCA Exchange, the available data on the inherited BRCA
variants were not aggregated in a comprehensive way or made available
to clinicians, researchers, data scientists, patients, and patient
advocates.\14\
---------------------------------------------------------------------------
\13\ https://www.nih.gov/about-nih/who-we-are/nih-director/
testimony-21st-century-cures-implementation-updates-fda-nih.
\14\ https://www.nih.gov/news-events/news-releases/brca-exchange-
aggregates-data-thousands-brca-variants-inform-understanding-cancer-
risk.
---------------------------------------------------------------------------
The Cures Act authorizes funding for these initiatives through the
Innovation Fund. The $2.5 billion increase requested by PMC in fiscal
year 2020 would ensure that the $492 million authorized by the Cures
Act this year would supplement the NIH's base budget as Congress
intended and allow these important initiatives to continue.
iv. conclusion
PMC appreciates the opportunity to highlight the NIH's importance
to the continued success of personalized medicine. The subcommittee's
support for a $2.5 billion increase over the NIH's program level
funding in fiscal year 2019 will bring us closer to a future in which
every patient benefits from an individualized approach to healthcare.
PMC will gladly provide additional information on the programs
described in our testimony upon request.
[This statement was submitted by Cynthia A. Bens, Senior Vice
President, Public Policy, Personalized Medicine Coalition.]
______
Prepared Statement of the Physical Science Education Policy Coalition
Dear Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee:
The Physical Science Education Policy Coalition (PSEPC) is a
diverse group of scientific non-profit organizations that works to
promote issues regarding all aspects of physical science education to
benefit both students and teachers.
We urge you once again to reject the White House's budget proposal
for the Department of Education to eliminate the following programs:
--Supporting Effective Instruction State Grants
--Student Support and Academic Enhancement Grants
--21st Century Community Learning Centers
Congress has authorized these programs to receive funding under
Title II and Title IV of the Every Student Succeeds Act (ESSA). ESSA
helps bolster our global competitiveness by allowing States the
greatest opportunity to strengthen their own physical science and STEM
education programs. Therefore, we urge you to fully fund these programs
in fiscal year 2020 appropriations.
Congress has shown that it values high-quality physical science
teachers and informal STEM learning by previously rejecting the White
House's proposed huge cuts to these programs for fiscal year 2018 and
2019. Instead, Congress provided funding for them as part of the
bipartisan omnibus spending bill (fiscal year 2018) and the Labor,
Health and Human Services, Education and Related Agencies
appropriations bill (fiscal year 2019).
These programs are vital for States to provide high-quality
physical science and STEM education. The Supporting Effective
Instruction State Grants (Title II-A) program allows States to fund
grants for teacher preparation programs. There is a significant
shortage of highly qualified middle and high school physics teachers.
In a nationwide survey of teachers in U.S. high schools who taught at
least one physics class, only 40 percent have major or minor in physics
or physics education.\1\ Title II-A funded teacher preparation programs
train teachers to deliver robust, high-quality STEM education. The
Student Support and Academic Enhancement Grants (Title IV-A) and the
21st Century Community Learning Centers (Title IV-B) gives States
funding for out of school STEM programs to enhance learning.
---------------------------------------------------------------------------
\1\ Who Teaches High School Physics?, https://www.aip.org/sites/
default/files/statistics/highschool/hs-whoteaches-13.pdf.
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The ESSA Consolidated State Plan published by the Missouri
Department of Elementary and Secondary Education (MO-DESE) in 2018 \2\
states, ``MO-DESE has a single area of critical need for State-level
activities under Title IV, Part A, Subpart 1. A recent statewide
analysis of advanced course offerings in mathematics and science
indicated that a significant number of high schools do not offer, and
consequently a significant number of students do not have access to,
advanced coursework.'' The table below presents data from the report
that provides examples of courses that have limited availability to
students. During the last 3 years, 451 high schools in Missouri--or 86
percent of all high schools in the State--have failed to offer a single
physics course. This equated to more than 26,000 junior and senior
students lacking access to a physics course during the 2016-17 school
year.
---------------------------------------------------------------------------
\2\ Every Student Succeeds Act, Missouri's Consolidated State Plan,
https://dese.mo.gov/sites/default/files/Missouri-Final-ESSA-
Plan.pdf#page=62.
According to the 2018 Oklahoma Educator Supply & Demand Report,\3\
the overall number of educators employed in Oklahoma's public schools
who have certificates in math and science has consistently declined
between 2012-13 and 2017-18. Certificates in math declined by 10
percent, and certificates in sciences drastically declined by 21
percent. Instead of loosening requirements for entry into the
profession to solve this problem, the Oklahoma State Department of
Education (OSDE) assembled a Teacher Shortage Task Force to implement
changes that would strengthen the teacher pipeline, thereby bolstering
recruitment and retention efforts in the State. The Oklahoma ESSA
Consolidated State Plan \4\ says, ``The complete elimination of Title
II, Part A funding would severely hamper the State's ability to achieve
its goal of reducing its need for emergency certified teachers. Title
II, Part A dollars are critical to Oklahoma's efforts to enhance
meaningful professional development offerings, provide supports to
teachers in implementing rigorous academic standards and equip
instructional leaders who can support teachers and ultimately increase
academic achievement for all students.''
---------------------------------------------------------------------------
\3\ 2018 Oklahoma Educator Supply & Demand Report, https://
sde.ok.gov/sites/default/files/
documents/files/
Oklahoma%20Teacher%20Supply%20and%20Demand%20Report%202018%20
February%20Update.pdf.
\4\ Oklahoma ESSA Consolidated State Plan, https://www2.ed.gov/
admins/lead/account/stateplan17/okconsolidatedstateplan.pdf.
---------------------------------------------------------------------------
A strong physical science background prepares students for success
in their university courses and careers. Student success also depends
upon them being taught by highly qualified teachers who have deep
knowledge of physical science. We should all strive to ensure that our
children receive the best education possible.
Thank you for your consideration. For additional information or to
learn more about the Physical Science Education Policy Coalition please
contact Dr. Bethany Johns from American Institute of Physics at
[email protected].
DEPARTMENT OF EDUCATION
[selected programs, in millions]
----------------------------------------------------------------------------------------------------------------
Fiscal Year
---------------------------------------------------------------
Funding Line 2020
2018 Enacted 2019 Enacted President's 2020 PSEPC
Budget Request Request
----------------------------------------------------------------------------------------------------------------
Supporting Effective Instruction State Grants
(Title II, Part A).......................... 2,056 2,056 0 2,296
Student Support & Academic Enrichment Grants
(Title IV, Part A).......................... 1,100 1,170 0 1,600
21st Century Community Learning Centers
(Title IV, Part B).......................... 1,212 1,222 0 1,222
----------------------------------------------------------------------------------------------------------------
Endorsed by the following member organizations:
Acoustical Society of America (ASA)
American Association of Physics Teachers (AAPT)
American Astronomical Society (AAS)
American Institute of Physics (AIP)
American Physical Society (APS)
The Optical Society (OSA)
[This statement was submitted by Dr. Bethany R. Johns, American
Institute of Physics, Physical Science Education Policy Coalition.]
______
Prepared Statement of the Physician Assistant Education Association
The Physician Assistant Education Association (PAEA), on behalf of
the 243 accredited PA programs in the United States, is pleased to
submit the following testimony in support of increased investment in
Title VII health workforce programs under the Public Health Service Act
in fiscal year 2020. At a time of both growing public health crises,
including the national opioid epidemic, and looming provider shortages,
Title VII programs have become increasingly critical to ensure
continued access to high-quality care for patients. In alignment with
our health professions education colleagues, we request a total of $690
million for both Title VII health professions and Title VIII nursing
programs in fiscal year 2020. This level of Federal support will
provide PA education, as well as our health professions peers, with
needed investments to prepare the next generation of healthcare
providers to care for all Americans.
the role of pas in care delivery in rural and medically underserved
areas
Throughout our profession's history, PAs have been on the
frontlines of healthcare delivery in the United States as critical
components of the health workforce in rural and medically underserved
areas. Through an intensive training process, PAs complete 1 year of
classroom-based instruction followed by full-time clinical rotations in
the fields of family and internal medicine, pediatrics, emergency
medicine, obstetrics and gynecology, general surgery, and behavioral
health, in addition to elective rotations. Our member programs
graduated 8,336 PAs in 2017, with a plurality of graduates going on to
serve in primary care practices.\1\ As a result of both the origins of
the profession as well as the emphasis on primary care during clinical
rotations, PAs currently constitute a significant portion of the
primary care workforce, with more 32,864 certified PAs currently
practicing in primary care specialties.\2\
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\1\ Physician Assistant Education Association. (2018). By the
Numbers: Program Report 33: Data from the 2017 Program Survey,
Washington, DC: PAEA. doi: 10.17538/PR33.2018.
\2\ National Commission on Certification of Physician Assistants.
(2018). 2017 Statistical Profile of Certified Physician Assistants by
Specialty. Johns Creek, GA: NCCPA. https://
prodcmsstoragesa.blob.core.windows.net/uploads/files/
2017StatisticalProfilebySpecialty.pdf
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Clinical training site shortages have emerged as the preeminent
barrier to program expansion. Fueled by health system consolidation and
increasing demands on clinician time, among other factors, clinicians
are less able to donate their clinical training expertise. The national
clinical site shortage threatens to hinder PA workforce development at
a time where an aging population and growing public health threats
necessitate considerable workforce expansion. According to a recent
PAEA Curriculum Report, 43.7 percent of PA programs now pay for
clinical training sites, up from 21 percent 5 years ago, a cost which
is ultimately borne by students in the form of increased tuition due to
limited Federal support for PA clinical training.\3\ To resolve this
issue, PAEA urges the committee to support innovative policy
interventions such as the Rural and Underserved PA Workforce
Demonstration proposed in H.R. 1686, which would invest in PA clinical
rotations in federally qualified health centers, rural health clinics,
and critical access hospitals, thus addressing both the clinical site
shortage and the issue of health workforce maldistribution.
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\3\ Physician Assistant Education Association, By the Numbers:
Curriculum Report 3: Data from the 2017 Clinical Curriculum Survey.
Washington, DC: PAEA, 2018. doi: 10.17538/CR3.2017.001.
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the opioid crisis: pa education is part of the solution
In spite of the recent enactment of comprehensive legislation by
Congress to address the national opioid epidemic, the number of opioid-
related overdose deaths nationally has continued its dramatic rise.
According to the National Institute on Drug Abuse, 47,600 people
perished in 2017 as a result of opioid overdoses.\4\ A critical
component of an effective national response to the opioid epidemic is a
well-trained behavioral health workforce equipped to ensure access to
evidence-based therapies such as medication-assisted treatment (MAT).
In 2018, PAEA partnered with the American Academy of Addiction
Psychiatry in a SAMHSA-supported effort to integrate the training
required to prescribe buprenorphine, a common office-based form of MAT,
into the curricula of PA programs throughout the country. Through this
Federal investment in PA education, PA graduates are beginning to enter
the workforce prepared to apply for the waiver to prescribe
buprenorphine, illustrating the valuable impact of existing Federal
investments as well as the potential achievements made possible through
new resources. Specifically, we encourage the committee to provide $25
million for the Substance Use Disorder Workforce Loan Repayment program
authorized in the SUPPORT for Patients and Communities Act to
incentivize our graduates to fully utilize this training following
graduation. We further urge the committee to provide $10 million for
the Mental and Substance Use Disorder Workforce Training Demonstration,
which was authorized in the 21st Century Cures Act.
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\4\ National Institute on Drug Abuse. (2019). Overdose Death Rates,
Bethesda, MD: NIDA.
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clinical training sites: new investments needed
An additional component of a broader national response to the
opioid epidemic must be improving both the availability and quality of
clinical training sites. In a 2014 survey of PA programs, behavioral
and mental health clinical training sites and preceptors were found to
be the third most difficult to recruit.\5\ Increased demand for
providers with the skills necessary to treat OUD will be a growing
source of pressure on the Nation's already limited supply of clinical
training sites in primary care. Continuing support of Title VII health
workforce programs as well as innovative new solutions such as the
Rural and Underserved PA Workforce Demonstration remain crucial steps
Congress can take to improve the capacity of PA programs to prepare
practice-ready graduates.
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\5\ Physician Assistant Education Association. (2014). 2014 PAEA
Program Survey. Alexandria, VA: PAEA.
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existing title vii investments
Beyond the need for new investments to improve the availability of
clinical rotations, and particularly behavioral health and primary care
rotations in traditionally underserved settings, PAEA is strongly
supportive of existing Title VII programs with a successful track
record in training students. The Primary Care Training and Enhancement
(PCTE) program, for example, provides PA programs with the resources
necessary to integrate curricular innovations such as student-run
medical clinics into their programs in order to direct more students to
primary care following graduation. Recognizing the importance of a
well-trained PA workforce in primary care, Congress enacted a 15
percent allocation requirement for PA education under the PCTE program.
This funding floor has been an invaluable tool for stimulating
innovation in PA primary care education--with demonstrable positive
implications for student training and patient care. Citing the most
recent outcomes data available as of fiscal year 2017, the Health
Resources and Services Administration (HRSA) has reported that the PCTE
program significantly exceeds targets both in the number of PAs
graduating from funded programs (357 compared to a goal of 120 in
fiscal year 2017) as well as those trained in and going on to practice
in underserved areas.\6\
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\6\ Health Resources and Services Administration. (2019). Fiscal
Year 2020 Congressional Budget Justification. Rockville, MD: HRSA.
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diversity and care for underserved populations
As a core principle, PAEA believes that the delivery of high-
quality care is dependent upon the development of a health workforce
that reflects the communities it will serve. To this end, in addition
to the innovation in primary care instruction made possible through
PCTE grants, PAEA also strongly supports increased funding for
Scholarships for Disadvantaged Students, the Health Careers Opportunity
Program, and the National Health Service Corps Substance Use Disorder
Workforce Loan Repayment Program. These programs have served to create
a pipeline to PA education for diverse students while providing the
incentives necessary for them to practice in underserved communities
following graduation.
recommendations for fiscal year 2020 appropriations
To facilitate continued innovation in PA education, PAEA urges the
Subcommittee to reinforce its commitment to Title VII health workforce
programs in fiscal year 2020. Along with our partners in the health
professions, we support funding Title VII and Title VIII programs at a
total level of $690 million for fiscal year 2020.
PAEA thanks the Subcommittee for its ongoing support of Title VII
health workforce programs and their role in supporting PAs in extending
access to care in rural and medically underserved areas. We look
forward to the opportunity for continued engagement with the
Subcommittee and its members in devising innovative solutions to the
challenges facing health professions education.
[This statement was submitted by Jonathan Bowser, MS, PA-C,
President,
Physician Assistant Education Association.]
______
Prepared Statement of the Planned Parenthood Federation of America
Dear Chairman Blunt and Ranking Member Murray,
Planned Parenthood is the Nation's leading women's healthcare
provider and advocate and a trusted, nonprofit source of primary and
preventive care for women, men, and young people in communities across
the U.S. Every year, Planned Parenthood health centers provide
affordable birth control, lifesaving cancer screenings, testing and
treatment for sexually transmitted infections (STIs), and other
essential care to nearly 2.4 million patients. As the largest sex
educator in the country, Planned Parenthood provides reliable
reproductive health information to 1.5 million young people and parents
each year. Backed by more than 12 million supporters, Planned
Parenthood works every day to defend access to healthcare and advance
women's rights at home and abroad. Through our international arm,
Planned Parenthood Global, we provide financial and technical support
to over 100 innovative partners in 12 countries in Africa and Latin
America for service delivery and advocacy to expand access to
reproductive healthcare and empower people to lead healthier lives.
On behalf of Planned Parenthood Federation of America, I am writing
to request you protect critical domestic and global reproductive health
and family planning programs while increasing funding for key
programmatic priorities. Continued investment in family planning
programs will ensure women's access to essential primary and preventive
healthcare services. These important programs have been effective at
improving health outcomes; the U.S. is currently experiencing the
lowest level of unintended pregnancy in 30 years and the lowest rate of
abortion since Roe v. Wade was decided in 1973. Globally, the rate of
unintended pregnancy has also declined, although progress remains
uneven, and maternal mortality has decreased by over 40 percent over
the past two decades.
This historic progress in women's health is in large part due to
significant expansions of family planning services and the increased
availability of more reliable forms of birth control. In the face of
this evidence, the Trump-Pence Administration continues to issue budget
proposals that would undermine and threaten to erode this important
progress. Additional proposed and final rulemaking on a number of
topics, including Title X and standards for the Affordable Care Act
(ACA) marketplaces, amount to full-scale attacks on access to women's
healthcare. This is particularly alarming for women of color in the
United States, who continue to have less access to quality healthcare
due to the intersections of structural racism, inequality, sexism,
classism, xenophobia, and other systemic barriers. Reinstatement of the
global gag rule has begun to erode similar progress made abroad and the
unprecedented expansion will magnify the well-documented harmful
impacts of the policy on communities around the world. Attacks on
domestic and global health programs only exacerbate existing health
equity challenges and the effort to ensure that no one is left behind.
Therefore, as you prepare the fiscal year 2020 appropriations
bills, Planned Parenthood respectfully requests that you protect and
support funding for several key programs that will help improve health
outcomes and combat disparities, including by:
--Funding the Title X Family Planning Program
--Funding STI Prevention
--Funding the Teen Pregnancy Prevention Program
--Eliminating harmful policy riders that limit access to abortion
Protect and increase funding for Title X--America's Family Planning
Program
The Title X program serves more than four million low-income
individuals annually at nearly 4,000 health centers located
nationwide.\1\ Title X services are highly effective--helping to
prevent nearly one million unintended pregnancies each year.\2\ In
every State, women and men rely on Title X for basic primary and
preventive healthcare and family planning services, including
contraception services and counseling, cancer screenings, and STI
testing and treatment. The Title X program not only meets the
healthcare needs of millions of individuals, but research has
consistently shown that it is cost-effective too. For every public
dollar invested in family planning, approximately $7.09 is saved in
Medicaid-related costs,\3\ a savings to both Federal and State
Governments.
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\1\ Fowler, C. I., Gable, J., Wang, J., & Lasater, B. (2017,
August). Family Planning Annual Report: 2016 national summary. Research
Triangle Park, NC: RTI International.
\2\ Frost JJ et al., Contraceptive Needs and Services, 2014 Update,
New York: Guttmacher Institute, 2016, https://www.guttmacher.org/
report/contraceptive-needs-and-services-2014-update.
\3\ Guttmacher Institute. Frost, J., Sonfield, A., Zolna, M., and
Finer, L. Return on Investment: A Fuller Assessment of the Benefits and
Cost Savings of the US Publicly Funded Family Planning Program. 2014.
https://www.guttmacher.org/pubs/journals/MQ-Frost_1468-0009.12080.pdf.
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Unfortunately, despite the proven benefits and savings, the Title X
program has been severely undermined. Since fiscal year 2014, the
program has been flat funded at $286.5 million, despite the fact that a
2016 report from researchers at the Centers for Disease Control and
Prevention (CDC), the HHS Office of Population Affairs, and George
Washington University estimated that the program would need $737
million annually to meet the needs of all low-income, uninsured women
in the United States.
In addition to proposing flat funding for the program in their
budget request, the Trump-Pence administration published a final rule
in March 2019 that would negatively impact the Title X provider network
and impose a domestic ``gag rule'' that prohibits Title X program
providers from making patient referrals for abortion care, even when a
patient makes a specific request. The rule eliminates a longstanding
requirement that Title X providers offer a broad range of medically-
approved contraception and imposes onerous and unreasonable physical
and financial separation requirements for abortion-related activities.
The rule would require us to practice medicine against the trust of
our patients and is, quite simply, unethical. For this reason, more
than 100 public health and medical organizations, including the
American Medical Association, National Hispanic Medical Association,
and the American College of Obstetricians and Gynecologists, have
publicly registered their opposition to this final rule.
The rule has been followed changes this Administration has already
imposed via the Funding Opportunity Announcement (FOA) for the Title X
program, including removing reference to Quality Family Planning
recommendations, the national standard of clinical care for family
planning services produced by CDC and the U.S. Office of Population
Affairs. Similarly, the term ``natural family planning''--a reference
to fertility awareness methods like the rhythm method or calendar
method--appears six times, but the term ``Long Acting Reversible
Contraceptives (LARC),'' the most effective methods of birth control
that have been growing in popularity, doesn't appear once.
Although the ACA made great strides in expanding insurance
coverage, the Supreme Court's decision to make the Medicaid expansion
optional for States has resulted in many low-income individuals
remaining uninsured, creating a significant gap in coverage that Title
X health centers are relied upon to fill. Recent data showing declines
in overall ACA marketplace enrollment only reinforces the challenge we
face to ensure all Americans have access to high-quality, affordable
care. We ask that you protect this critical program and support the
health of millions of Americans by providing $400 million in fiscal
year 2020 for the Title X program.
Provide Funding for STI Prevention at the Centers for Disease Control
(CDC)
Sexually-transmitted infections (STIs) continue to constitute a
major public health problem. The CDC reports that almost 2.3 million
cases of syphilis, chlamydia, and gonorrhea were diagnosed in the
United States in 2017, highlighting the need for people to access
sexual healthcare. This marked the fourth consecutive year of increases
in the rates of these STIs. Screening and treatment for STIs--including
HIV/AIDS, gonorrhea, and chlamydia--are an essential part of planning
for a healthy pregnancy and healthy communities.
In fact, untreated chlamydia is a major public health issue and the
leading cause of preventable infertility. Nearly 1.6 million cases of
chlamydial infection were reported in 2016, a 4.7 percent increase
since 2015.\4\ Despite CDC recommendations for routine screening, many
sexually active women are not being tested for chlamydia infection, in
part because of limited resources for screening. Every $1 spent on
chlamydia screening and prevention saves $12 in reduced costs from
complications.\5\ Funding for CDC's HIV/AIDS, STD, and TB prevention
programs should be increased to $1.2 billion, with significant
increases specifically directed to the STD program. Increasing funding
for the CDC's STI prevention programs is a cost-effective public health
investment that will improve the lives of women across the country.
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\4\ Centers for Disease Control and Prevention. Sexually
Transmitted Disease Surveillance 2016. Atlanta: U.S. Department of
Health and Human Services; 2017. Available at https://www.cdc.gov/std/
stats16/chlamydia.htm.
\5\ Centers for Disease Control and Prevention. Chlamydia Screening
and Treatment Programs for Young Women. March 1997. http://www.cdc.gov/
media/pressrel/chlamy1.htm.
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Increase Funding for the Teen Pregnancy Prevention Program and DASH,
Eliminate Harmful and Ineffective Abstinence-Only-Until-
Marriage Programs
As the Nation's leading provider of sex education, Planned
Parenthood is committed to helping teens stay healthy and safe. It is
crucial that young people have access to sex education programs that
give them knowledge and skills they need to prevent unintended
pregnancies and sexually transmitted diseases to develop healthy
relationships. The Teen Pregnancy Prevention Program (TPPP) and the CDC
Division of Adolescent and School Health (DASH) fund evidence-based
programs for youth that have been proven to reduce sexual risk
behaviors, thus contributing to a myriad of improved health outcomes,
including reductions in rates of teen pregnancy.
Teen pregnancy rates are declining in the U.S. and are at a
historic low, but are still much higher than most of the industrialized
world, yet 75 percent of pregnancies among 15-19 year olds are
unintended and significant racial and ethnic disparities in these rates
persist. Teen pregnancy accounts for $9.4 billion a year in cost to
taxpayers. TPPP and the DASH program are cost effective ways to fund
sex education for youth; these programs have reduced sexual risk
behavior among young people, thus contributing to the reduction in teen
pregnancy. Sex education has a proven track record of helping young
people make responsible decisions that keep them safe and healthy.
These programs enjoy vast public support because of their crucial role
in providing the information and education that young people need to
grow into healthy adults.
On the other hand, policies and programs aimed at promoting an
abstinence-only-until-marriage (AOUM) approach, or so-called ``sexual
risk avoidance,'' are harmful. This Administration continues to stand
up and fund these approach despite years of research that shows AOUM
programs are ineffective and do not adequately provide young people
with the knowledge and skills to avoid sexual risk behaviors. By
excluding significant portions of comprehensive sexual education, AOUM
methods can provide inaccurate and incomplete information and can
intentionally shame young people, particularly LGBTQ students.
The administration has made it very clear that they would like to
unravel the TPPP program. The Chief of Staff to the HHS Assistant
Secretary of Health made the following statement on Ohio public radio:
``we're hopeful that Congress will eliminate the Teen Pregnancy
Prevention Program but if they choose not to then we have every
intention to improve this program so that more young people are helped
as a result.'' \6\ In addition, on November 3, 2017, HHS announced a
``new research and evaluation collaboration to support and improve teen
pregnancy prevention and sexual risk avoidance programs.'' These
actions by the administration continue to ignore the positive impacts
of TPPP. Dismantling this high quality, evidence-based program is
short-sighted and will harm hundreds of thousands of our most
vulnerable youth by denying them high quality information and education
that will help make healthy decisions about their futures.
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\6\ Valerie Huber, Chief of Staff to the Assistant Secretary for
Health, All Sides with Ann Fisher, Ohio Public Radio, August 23, 2017.
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Planned Parenthood urges appropriators to provide $130 million for
TPPP, including $6.8 million for TPPP dedicated evaluation transfer
authority, and to provide $50 million for DASH. Finally, funding should
be eliminated for ineffective abstinence-only-until-marriage programs.
These three specific requests are supported by the Sex Ed
Coalition, comprised of over 40 national organizations including
Advocates for Youth, The AIDS Institute, Guttmacher Institute, Healthy
Teen Network, Human Rights Campaign, National Coalition of STD
Directors, National Family Planning & Reproductive Health Association,
Planned Parenthood Federation of America, and the Sexuality Information
and Education Council of the U.S. (SIECUS). The full list of coalition
members is available upon request.
Eliminate Harmful Policies That Undermine Access to Abortion and
Women's Health
Opponents of women's healthcare have long used the appropriations
process to undermine women's access to comprehensive reproductive care,
including access to safe and legal abortion. Through policy riders in
bills under the jurisdiction of multiple subcommittees, 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. We urge the Committee to eliminate all
such bans on women's access to comprehensive care and to restore
abortion access for women who have coverage through programs like
Medicaid or the Federal Employee Health Benefits Program and direct
services through the Indian Health Service and Federal Bureau of
Prisons. In addition, the Committee should reject the multiple harmful
new policy riders we have seen proposed in years past that would roll
back progress for women, including proposals to ``defund'' Planned
Parenthood; enact sweeping new religious refusal language allowing
employers, insurers, and healthcare providers to deny others access to
abortion; and others.
********
PPFA issues these requests in the hopes that we can protect and
build upon Federal investments to make quality reproductive healthcare
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
([email protected]). For more information about domestic
funding priorities, please contact Jack Rayburn, Associate Director,
Legislative Affairs ([email protected]).
Sincerely.
[This statement was submitted by Jacqueline Ayers, Vice President,
Public Policy and Government Affairs, Planned Parenthood Federation of
America.]
______
Prepared Statement of the Polycystic Kidney Disease Foundation
The PKD Foundation appreciates the opportunity to present our
support for appropriating $41.6 billion in fiscal year 2020 for the
National Institutes of Health (NIH). We also request that $2.165
billion be provided to the National Institute of Diabetes and Digestive
Diseases and Kidney Disease (NIDDK), and that 10 percent of this be
dedicated to PKD research. Lastly, we request that you recognize PKD in
NIH's next list to Congress on updated research activities.
about pkd
There are two forms of polycystic kidney disease (PKD): automosal
recessive PKD and autosomal dominant PKD.
Autosomal recessive polycystic kidney disease (ARPKD), is a rare
genetic disease, affecting 1 in 20,000 live births. It is often life-
threatening and can cause death shortly after birth. If both parents
have the ARPKD gene, there is a 25 percent chance that each offspring
will have the disease. There is no treatment and no cure for ARPKD, and
only limited research currently taking place.
Autosomal dominant polycystic kidney disease (ADPKD or simply PKD)
is a genetic disease that causes fluid-filled cysts to grow
uncontrolled in the kidneys and can eventually lead to kidney failure.
It is a painful disease that significantly impacts quality of life,
causing a host of other issues including cysts in other organs such as
the liver, chronic hypertension and increased risk for cerebral
aneurysms. A parent with ADPKD has a 50 percent chance of passing it to
each child. ADPKD occurs in 1 in 500 to 1,000 individuals, but many
cases go undiagnosed. Over 600,000 Americans are suspected to have
ADPKD.
PKD is the fourth leading cause of kidney failure with about 50
percent of PKD patients entering end stage renal disease in their 50's.
Very few treatment options exist for PKD patients, and once their
kidneys fail they must undergo dialysis or a kidney transplant. While
these options are life-saving, they are both associated with excess
morbidity and mortality. The very first and only treatment for PKD was
approved in April 2018. This treatment, although groundbreaking, does
not work for all PKD patients and comes with significant side effects
that impact daily life. Having additional treatment options to preserve
and extend native kidney function is clearly the best option,
particularly because there are far more patients in need of a
transplant than there are available kidneys. Research is the path to
additional treatments that stop or slow the progression of the disease
with the ultimate goal of keeping the kidneys from failing.
about the pkd foundation
The PKD Foundation is the only organization in the U.S. solely
dedicated to finding treatments and a cure for PKD. We do this through
promoting programs of research, education, advocacy, support and
awareness on a national level, along with direct services to local
communities across the country. We are the largest private funder of
PKD research. Since our founding in 1982, we have invested almost $50
million in basic and clinical research, nephrology fellowships and
scientific meetings with a simple goal: to discover and deliver
treatments and a cure for PKD.
our request
The PKD Foundation appreciates your interest in NIH research
efforts and thanks Congress for increasing funds for the NIH over the
past few years. NIH is intended to devote $29 million for PKD research
in fiscal year 2019; actual spending amounts are no yet available. In
fiscal year 2013, that figure was $40 million. Unfortunately, it is
notable that PKD receives less funding from the NIH than other
significantly less prevalent genetic diseases. It is also notable that,
unlike non-renal diseases, Medicare pays for dialysis and care of PKD
patients in end stage renal disease (ESRD) regardless of age. According
to a 2015 GAO report, in 2013 Medicare spent about $11.7 billion on
dialysis care for about 376,000 patients, some of whom had PKD. The
cost of this care is significantly greater than Federal research
support.
Although the NIH received a 5.4 percent budget increase in fiscal
year 2019 ($2 billion over fiscal year 18 funding levels), research in
the National Institute of Diabetes and Digestive and Kidney Diseases
(NIDDK) received just under a 2.8 percent increase. Yet, since fiscal
year 2013 NIDDK funding for PKD research has fallen by about 27
percent. By having NIDDK invest more in PKD research, a significant
proportion of the PKD population could be converted from recipients of
Medicare-funded ESRD coverage into more productive citizens.
The Appropriations Committees have expressed interest in specific
health research areas. In recent years, appropriations bills have
requested NIH to provide Congress with an update for a large number of
listed diseases, conditions or topics, and a description of the latest
efforts ongoing and planned for the following fiscal year.
Unfortunately, PKD was not listed in any of these requests.
PKD patients and advocates have two requests for Congress as it
develops the fiscal year 2020 funding bill for NIH:
--Provide $2.165 billion for NIDDK and direct that 10 percent of the
additional funds be used for increased PKD research.
--Provide $41.6 billion for NIH funding
--Include PKD in the next NIH update list in the final fiscal year
2020 appropriations bill.
[This statement was submitted by Alexis Denny, Director of
Government Affairs, Polycystic Kidney Disease Foundation.]
______
Prepared Statement of the Population Association of America and
Association of Population Centers
Thank you, Chairman Blunt and Ranking Member Murray for this
opportunity to express support for the National Institutes of Health
(NIH), National Center for Health Statistics (NCHS), Institute of
Education Sciences (IES), and Bureau of Labor Statistics (BLS). These
agencies are important to the members of the Population Association of
America (PAA) and Association of Population Centers (APC) because they
provide direct and indirect support to population scientists and the
field of population, or demographic, research overall. In fiscal year
2020, we urge the Subcommittee to adopt the following funding
recommendations: $41.6 billion, NIH; $175 million, NCHS; $670 million,
IES; and $655 million, BLS.
national institutes of health
Demography is the study of populations and how or why they change.
A key component of the NIH mission is to support biomedical, social,
and behavioral research that will improve the health of our population.
The health of our population is fundamentally intertwined with the
demography of our population. Recognizing the connection between health
and demography, NIH supports population research programs primarily
through the National Institute on Aging (NIA) and the National
Institute of Child Health and Human Development (NICHD). As members of
the Ad Hoc Group for Medical Research, PAA and APC recommend an
appropriation of at least $41.6 billion for the NIH, a $2.5 billion
increase over the NIH's program level funding in fiscal year 2019.
national institute on aging
By 2030, there will be 72 million Americans aged 65 and older. To
inform the implications of our rapidly aging population, policymakers
need objective, reliable data about the antecedents and impact of
changing social, demographic, economic, health and well being
characteristics of the older population.
The NIA Division of Behavioral and Social Research (BSR) is the
primary source of Federal support for basic population aging research.
In recent years, the BSR Division expanded its Alzheimer's disease
research portfolio to include the population sciences. Some primary
examples of this activity include enhanced collection of nationally
representative data via the Health and Retirement Study to measure
cognitive function to inform our understanding of national trends and
differences. In addition to enhancing data collection, NIA developed a
dementia care research agenda and added an Alzheimer's disease research
component as part of the Roybal Centers of Translation Research in
Behavioral and Social Sciences of Aging, Resource Centers for Minority
Aging Research, and Demography and Economics of Aging Centers program.
In addition to continuing these activities in fiscal year 2020,
with additional funding, the Division can pursue plans to renew and
expand the Demography and Economics of Aging Centers Program as well as
achieve its goals, which PAA and APC support, as articulated in its
recently revised strategic directions document, Aging Well in the 21st
Century: Strategic Directions for Research on Aging.
As members of the Friends of the National Institute of Aging, PAA
and APC urge the Subcommittee to provide $450 million to support trans-
NIH aging research initiatives in fiscal year 2020.
PAA and APC thank Chairman Blunt and Ranking Member Murray for
their bipartisan support of the NIH. We hope you will continue to work
together to provide the NIH with the level of funding, $41.6 billion,
endorsed by the broader NIH advocacy community of which the PAA and APC
are active members.
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. Population research, now commonly termed
``population science,'' is cited explicitly in the Institute's
authorizing statute as a key tenant of the Institute's broader mandate.
Accordingly, over the decades NICHD, specifically via its Population
Dynamics Branch, has supported innovative and influential population
science initiatives, including: (1) large-scale longitudinal surveys,
with population representative samples, such as the National
Longitudinal Survey of Adolescent Health and Fragile Families and Child
Well Being Study; (2) a nationwide network of population science
research and training centers; and, (3) numerous scientific research
initiatives that have advanced our understanding of specific diseases
and conditions, including obesity, autism, and maternal mortality, and,
further, how socioeconomic and biological factors jointly determine
human health.
In additional to supporting individual research grants and surveys,
NICHD supports the Population Dynamics Centers Research Infrastructure
Program. These highly productive centers, based at U.S. universities
and private research institutions nationwide, have advanced U.S.
science by fostering groundbreaking interdisciplinary research on human
health and development, and increased the scientific pipeline by
nurturing the careers of junior researchers. With additional funding in
fiscal year 2020, the Institute will be able to maintain its strong
commitment to these centers of research excellence as well as the rest
of the Population Dynamics Branch's impressive research portfolio.
As members of the Friends of NICHD, PAA and APC request that NICHD
receive $1.6 billion in fiscal year 2020, an increase of $94 million
over fiscal year 2019.
national center for health statistics
NCHS is the Nation's principal health statistics agency, providing
data on the health of the U.S. population. NCHS funds and manages the
National Vital Statistics System (NVSS), which contracts with the
States to collect birth and death certificate information. NCHS also
funds several complex large surveys to help data users understand the
population's health, influences on health, and health outcomes. In the
last year, critical research findings, including the number of deaths
attributable to the opioid epidemic, decreased life expectancy in the
U.S., decreased teen pregnancy, and the incidence of maternal and
infant mortality, were informed by NCHS data. NCHS health data are an
essential part of the Nation's statistical and public health
infrastructure.
The rising costs of conducting surveys coupled with years of flat
or near-flat funding has forced NCHS to focus most of its resources on
sustaining high-quality data that communities across the country rely
on to understand their health. However, as survey costs continue to
rise, response rates decline, and our Nation's healthcare system
becomes more complex, NCHS has not been able to invest in much-needed
innovation and modernization that would allow it to produce better
information more quickly and efficiently, while reducing the reporting
burden on local data providers. With additional funding, NCHS could
capitalize on opportunities surrounding advances in statistical
methodology, big data, and computing by:
--Linking data reporting systems and better integrating electronic
health records into NCHS' data production, allowing it to
receive and process information more efficiently, reduce burden
on data providers, and analyze and release statistics faster;
--Researching how to conduct its most complex surveys more
efficiently, making surveys less costly to taxpayers and less
burdensome on participants; and,
--Integrating machine learning into its analysis to spot trends in
Americans' health earlier.
Any cuts below the agency's fiscal year 2019 level, which the
Administration is proposing, would have a demonstrably negative effect
on the agency's programs, survey data, and staff. For example, if
NCHS's budget is reduced below its fiscal year 2019 funding level, NCHS
will need to consider eliminating or radically altering one of its two
seminal surveys: the National Health Interview Survey (NHIS)--the
principal data source for studying demographic, socioeconomic, and
behavioral differences in health and mortality outcomes since 1957--or
the National Health and Nutrition Examination Survey (NHANES), which
has assessed the health and nutritional status of adults and children
in the United States since the early 1960s. Despite making marginal
adjustments to accommodate years of budget cuts, including reducing
sample size and delaying necessary survey innovations, the agency has
stated it cannot responsibly sustain these surveys if its funding level
dips below its fiscal year 2019 level, $160 million.
As members of the Friends of NCHS, PAA and APC urge the
Subcommittee to reject the Administration's request ($155 million) and
to provide NCHS with $175 million in fiscal year 2020. We are pleased
that H.R. 2740, the fiscal year 2020 Labor, Health and Human Services
and Education Appropriations bill passed by the House Appropriations
Committee in May 2019, not only restores NCHS funding to its fiscal
year 2019 level, but also includes a provision directing the Centers
for Disease Control and Prevention to develop a plan for spending $100
million on data surveillance that includes NCHS. PAA and APC urge the
subcommittee to adopt this provision.
bureau of labor statistics
The BLS produces essential economic information for public and
private decisionmaking. Population scientists who study and evaluate
labor and related economic policies use its data extensively. Further,
the field 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 $3 million increase that BLS received in fiscal year 2019.
However, the agency is struggling to overcome years of insufficient
support. Between fiscal year 2009 and fiscal year 2015, the purchasing
power of BLS appropriations decreased every year. BLS needs a
meaningful increase of funding in fiscal year 2020 to not only sustain
current operations, but also to make much needed improvements in
existing programs and surveys, including:
--Expanding the Job Openings and Labor Turnover Survey to improve
timeliness and add industry detail and state level reports;
--Modernizing the Consumer Expenditure Survey to improve inflation
statistics;
--Updating the Industrial Price and Import/Export program systems;
and,
--Developing a new Survey of Employer-Provided Training.
Given the importance and unique nature of BLS data, and the adverse
effect years of insufficient funding are having on the agency's ability
to modernize and advance its core mission, we urge the Subcommittee to
provide BLS with $655 million in fiscal year 2020, a $40 million
increase over the agency's fiscal year 2019 funding level. It should be
noted that the Administration requested $655 million for the BLS in
fiscal year 2020 as well; however, the Administration's request
stipulates that this increase be used entirely to pay for the physical
relocation of the agency's headquarters by fiscal year 2024. PAA and
APC encourage the Subcommittee to direct the BLS to prioritize any
additional funding it may receive in fiscal year 2020 on support for
programs and personnel. We are very pleased that the House
Appropriations Committee recommended providing BLS with $675.8 million
in fiscal year 2020. This funding level is a meaningful increase ($60.8
million more than the fiscal year 2019 enacted level and $20.8 million
than the President's request) that would provide BLS with essential
resources to revitalize the agency.
institute of education sciences
The Institute of Education Sciences (IES) is a semi-independent,
nonpartisan branch of the U.S. Department of Education and plays a
critical role in developing the research base for and examining the
effectiveness of education programs and curricula. The National Center
for Education Statistics (NCES) is the statistical arm of IES (as well
as being one of the 13 Federal principal statistical agencies) and
provides objective data, statistics, and reports on the condition of
education in the United States. Population scientists rely on NCES-
funded surveys to conduct research on the myriad topics, such as
linkages between educational access and attainment to health outcomes
of specific populations, economic well-being, incarceration rates and
many other indicators.
PAA and APC, as members of the Friends of IES, urge the
Subcommittee to provide the agency with $670 million in fiscal year
2020, a $54.5 million increase over the fiscal year 2019 funding level.
Thank you for considering our support for these agencies as the
subcommittee drafts the fiscal year 2020 Labor, Health and Human
Services and Education Appropriations bill.
[This statement was submitted by Mary Jo Hoeksema, Director,
Government and Public Affairs, Population Association of America and
Association of Population
Centers.]
______
Prepared Statement of Power to Decide
Dear Chairman Blunt, Ranking Member Murray, and members of the
Subcommittee:
The undersigned organizations are dedicated to the health and
success of youth in communities across the country, and as such we urge
you to support the evidence-based Teen Pregnancy Prevention (TPP)
Program. This competitive grant program has made an important
contribution to building a body of evidence of what works when it comes
to teen pregnancy prevention. The TPP Program is funded at $101 million
for fiscal year 2019. As you work on the Senate LHHS bill for fiscal
year 2020, we respectfully request that you include the following as
the fiscal year 2020 House Appropriations Committee bill recently did:
--restore funding for the TPP Program to $110 million-its original
funding level,
--provide language that protects the integrity of the TPP Program,
and
--continue the $6.8 million investment in the evaluation of teen
pregnancy prevention approaches.
Teen Pregnancy Prevention Program: Currently administered by the
U.S. Department of Health and Human Services (HHS) Office of Adolescent
Health (OAH),\1\ the TPP Program is funding 81 competitive five-year
grants (fiscal year 2015--fiscal year 2019) in a wide variety of
communities and settings across the country, using evidence-based
approaches. In addition, OAH recently awarded another 14 grants (fiscal
year 2018--fiscal year 2019) to develop early research. The TPP Program
has already made vital contributions to the growing body of knowledge
of what works for whom and under what circumstance to prevent teen
pregnancy. This resulted from a commitment to high-quality
implementation, rigorous evaluation (primarily randomized control
trials), innovation, and learning from results.
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\1\ Murray, Patty (2019, April 2) Letter from Senator Murray to HHS
Secretary Alex Azar regarding the restructuring of the Office of the
Assistant Secretary of Health. Retrieved May 28, 2019 from
www.help.senate.gov/imo/media/doc/Azar%20OASH%20Reorg%20Letter%20Final%
204%202%2019--.pdf.
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The teen pregnancy and teen birth rate have declined by an
impressive 63 percent and 72 percent respectively since the early
1990s. There have been declines across all racial and ethnic groups,
and in all 50 States. In addition, these declines have saved on public
spending. A 2018 study found that in 2015 alone, the United States
realized $4.4 billion dollars in savings due to the decline in the teen
birth rate between 1991 and 2015.\2\ Yet it is still the case that
roughly one in four girls in this country will become pregnant before
the age of 20, and there are disparities by race/ethnicity, age, and
geography. In addition, youth in foster care have rates twice as high
as youth not in care. The TPP Program helps address these disparities
by targeting funds to youth and communities with the greatest needs.
---------------------------------------------------------------------------
\2\ Progress Pays Off. January 2018. Power to Decide. Retrieved May
28, 2019 from https://powertodecide.org/what-we-do/information/why-it-
matters/progress-pays.
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Despite the progress that has been made, the United States still
has the highest rate of teen pregnancies in the developed world-nearly
450,000 pregnancies to teens each year. At a time when the U.S. needs
to become more competitive in the global economy, our teen pregnancy
rates are still much higher than our trading partners and competitors,
making it harder for many young people to achieve their goals. Only
half of teen mothers obtain a high school diploma by age 22, and less
than 2 percent will complete college by the time they turn 30. In
addition, teen mothers and their infants are also at increased risk for
poor health outcomes, such as preterm birth and low birth weight.
Nevertheless, the unprecedented declines over the past two decades show
that progress is possible.
The TPP Program is a pioneering government program that uses
evidence, both as criteria for funding decisions and to rigorously
evaluate results. Independent experts and members of Congress on both
sides of the aisle recognize the value in evidence-based programs, as
does the general public. For example, polling indicates that 85 percent
of adults (75 percent of Republicans and 89 percent of Democrats) favor
maintaining Federal funding for the TPP Program. Also, the September
2017 unanimously-agreed-to-report from the bipartisan Commission on
Evidence-Based Policymaking--which was established by former House
Speaker Paul Ryan and Senator Patty Murray--highlighted the TPP Program
as an example of a Federal program developing increasingly rigorous
portfolios of evidence.\3\
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\3\ CEP Final Report. September 2017. CEP Final Report: The Promise
of Evidence-Based Policymaking. Retrieved May 28, 2019 from https://
www.cep.gov/cep-final-report.html.
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Yet since 2017, HHS has repeatedly sought to eliminate or undermine
the TPP Program. This includes shortening the second cohort of five-
year grants (fiscal year 2015--fiscal year 2019) to only 3 years, until
grantees prevailed in 11 lawsuits filed in response to the grant
shortening. Despite numerous concerns and repeated inquiries from
Congress, attempts to fundamentally remake the program continue. For
these reasons, we strongly urge appropriators to both fully fund the
TPP Program and include language that protects the program from ongoing
efforts to subvert congressional intent.
Evaluation of Teenage Pregnancy Prevention Approaches: As part of
the growing bipartisan commitment to evidence-based policymaking
there's a recognition of supporting high quality evaluation within
Federal agencies. Congress has historically provided a modest amount of
funding to evaluate teen pregnancy prevention approaches, including
longitudinal evaluations. This funding, in conjunction with the TPP
Program, has contributed to deepening knowledge of what works to reduce
teen pregnancy. This smart investment should be continued in fiscal
year 2020.
We recognize that Congress faces tough budget decisions. In this
context, fully funding and protecting the TPP Program is a modest but
strategic investment by the Federal Government to address the Nation's
still high rate of teen pregnancy. This investment also contributes to
progress on a range of other critical issues that are important to
Americans, from increasing high school and college completion, to
strengthening the workforce, as well as improving maternal and infant
health. We hope that you will stand with the groups below to protect
this funding that will improve the lives of youth--today and for future
generations--while also saving on public sector spending.
If you need additional information, please contact Rachel Fey,
Director of Public Policy at Power to Decide at [email protected].
Thank you for your consideration of these requests.
American Academy of Pediatrics
California Association of School Health Educators
Center for Latino Adolescent and Family Health
The Dibble Institute
EFFICACITY, LLC
Hawaii Youth Services Network
The Jacobs Institute of Women's Health
The Kirkpatrick Policy Group (OK)
Lee County Health Department (Dixon, IL)
Power to Decide
The Policy and Research Group
Project Vida Health Center (El Paso, TX)
Religious Coalition for Reproductive Choice
Results for America
SHIFT NC
Teen Pregnancy & Prevention Partnership (MO)
Wyman Center (MO)
______
Prepared Statement of Prevent Blindness
Prevent Blindness appreciates the opportunity to submit testimony
to the Subcommittee and respectfully requests the following allocation
and support in fiscal year 2020 to promote eye health and prevent eye
disease and vision loss in the United States:
--$5,000,000 to restore and expand vision and eye health surveillance
and public health intervention efforts at the Vision Health
Initiative of the Centers for Disease Control and Prevention
(CDC).
--$4,000,000 for the Glaucoma Project at CDC to allow the program to
continue to improve glaucoma screening, referral, and treatment
by reaching populations that experience the greatest disparity
in access to glaucoma care.
introduction and overview
Prevent Blindness is the Nation's leading nonprofit, voluntary
organization committed to preventing blindness and preserving sight.
Prevent Blindness represents millions of people of all ages across the
country who live with low vision and vision-related eye diseases.
A Robert Wood Johnson Foundation study ranks eye disorders as the
5th leading chronic condition, requiring ongoing treatment and
management over one's lifetime, among those aged 65 years and up and
7th across all age groups. The national cost of vision problems,
including private and public payments for medical care, long-term care,
patients' out-of-pocket costs, direct and indirect costs, and lost
productivity and consequential lost tax revenue amounted to $145
billion in 2014, and is expected to increase to $274 billion by 2032
just as the baby boomer generation is projected to become Medicare-
eligible. National expenditures on vision problems, as a result of an
aging population and changes in demographics, are projected to reach
$385 billion by 2032 and $717 billion by 2050. The proportion of these
costs paid by government programs is projected to increase from 32.6
percent to 41.4 percent by 2050 as the last of the baby boom generation
becomes eligible for Medicare. Vision impairment and eye disease often
contribute to or are complicated by other serious health-related
conditions including diabetes, falls and injuries related to falling,
stroke, depression and social isolation, hearing impairment, or
cognitive decline. Lack of mobility, independence, access to care and
self-management of health conditions are all equally serious
consequences of vision problems. With an aging population and a working
adult population who faces a rise in chronic diseases that affect their
vision and ability to maintain their own economic independence through
sustained employment, now is the time to invest in our collective eye
health.
To curtail the increasing incidence of vision loss in America, and
its accompanying economic burden, Prevent Blindness is requesting
sustained and meaningful Federal funding for programs that promote eye
health and prevent eye disease, vision loss, and blindness. We thank
the Subcommittee members for working to ensure the VHI and Glaucoma
Project at the CDC received additional investment in the fiscal year
2019 legislation. The increases we ask today are a critical first step
to addressing the burden of vision impairment, and we urge Members to
increase the VHI's funding level and maintain the fiscal year 2019
level for the Glaucoma Project at the CDC for fiscal year 2020. Vision
loss is often preventable, but without the necessary funding to better
understand eye conditions, expand access to care, develop treatment
options, and expand public health systems and infrastructure to
disseminate good science and prevention strategies, millions of
Americans face the loss of independence, health, and their livelihoods.
vision and eye health at the cdc: helping to save sight and save money
The Centers for Disease Control and Prevention's Vision Health
Initiative (VHI) was established in 2005 to address the ongoing
national vision impairment and eye disease burden through surveillance,
public health research, and evidence-based public health interventions.
The VHI relies on the most reliable surveillance and epidemiology tool
available--CDC's National Health and Nutrition Examination Survey
(NHANES)--to track State-level data on vision loss and eye disease,
including variances across difference subgroups and demographics, and
implement findings into evidence-based, strategic public health
interventions at the State and community level. However, due to a
severe and continued lack of resources allocated through Federal
appropriations to the VHI over the past eight fiscal years (fiscal year
2011--fiscal year 2019), national prevalence estimates of vision
impairment and eye disease are nearly 10 years old with the last use of
the NHANES to collect vision and eye health data conducted between 2005
and 2008.
Without the resources to employ the NHANES, the VHI has leveraged
existing national surveys to create estimations of our national vision
and eye health burden through use of the Behavioral Risk Factor
Surveillance System (BRFSS) and American Community Survey (ACS).
However, these tools are limited due to variation in the questions
being asked, data based on self-reported rates of severe vision loss
and blindness and not eye disease or vision impairment, and the limited
scope of data available. Additionally in 2015, the CDC funded a project
to establish a national Vision and Eye Health Surveillance System
(VEHSS) bringing together existing data sets on vision impairment and
eye disease. This work translated into the foundation of a 2016 report
from the National Academies of Sciences, Engineering, and Medicine,
Making Eye Health a Population Imperative: Vision for Tomorrow.
The NASEM report specifically outlines the important role of the
CDC's Vision Health Initiative in facilitating needed surveillance,
public health research and interventions, and building State and local
capacity to incorporate vision and eye health at the community level.
Equipping the VHI with the resources needed to update national and
State-level prevalence estimates of the most serious eye diseases and
vision impairments is one of the report's top priorities. The work of
the CDC's VHI must lead the efforts to align policy to slow the
national growth of vision problems, saving both sight and dollars for
Federal and State Governments, as well as private individuals and
institutions.
Without adequate funding, the VHI has been unable to employ the
NHANES, which is the most reliable tool available to collect data
related to the national scope and burden of vision loss and eye
disease. With at least $5 million appropriated to the VHI in fiscal
year 2020, VHI can resume use of the NHANES to collect data on rates of
diabetic retinopathy, glaucoma, and vision loss as well as determine
rates of vision and eye examinations and measurements of visual acuity,
screening tests, and visual functioning assessment to better determine
where gaps in access and patient education exist. This data can bolster
State capacity to respond to the needs of their population with
collaborative interventions and targeted strategies to improve vision
and eye health at the State, local, or systems level. This much-needed
and overdue injection of capital can be used to deploy this information
to State and local public health departments to get these strategies on
the ground.
While updated national prevalence estimates of our vision and eye
health burden are needed, what we do know is that at least 12 million
Americans aged 40 and older (working age adults) have impaired vision.
1 million Americans are blind, 3 million Americans have uncorrectable
vision impairment, and 8 million live with uncorrected refractive
error. Diabetic eye disease, glaucoma, uncorrected refractive error,
and age-related macular degeneration are the most common, yet most
preventable, reasons why people lose their sight. With $5 million in
renewed investments to the VHI to create change in the current system,
these trends can be reversed.
glaucoma project
As well, we ask the Committee to consider the CDC's work in
improving glaucoma screening, referral, and treatment particularly for
populations that face disparity in access to glaucoma care. Glaucoma is
a leading cause of blindness for people aged 60 years and older.
Glaucoma is often called the ``thief of sight'' because it shows no
symptoms or noticeable vision loss in its early stages. Early detection
and treatment is vital in glaucoma care because, by the time vision
loss or other symptoms appear, permanent and irreversible damage to the
eye has already occurred and lost vision cannot be restored. We ask the
Committee to maintain funding for the Glaucoma project at the CDC so
that the work may continue reaching high-risk populations with an
emphasis on the need for early detection and monitoring of glaucoma.
conclusion
On behalf of Prevent Blindness, our Board of Directors, and the
millions of people at risk for vision loss and eye disease, we thank
you for the opportunity to submit written testimony regarding fiscal
year 2020 funding for the CDC Vision Health Initiative, CDC Glaucoma
Project, and the MCHB National Center for Children's Vision and Eye
Health. Please know that Prevent Blindness stands ready to work with
the Subcommittee and other Members of Congress to advance policies that
will prevent blindness and preserve sight.
[This statement was submitted by Jeff Todd, President & CEO,
Prevent
Blindness.]
______
Prepared Statement of Project Cure, Inc.
Dear Subcommittee Members:
I am writing on behalf of Project Cure, Inc., a 501(c)(4) public
advocacy group that promotes research into natural therapies for a
variety of disease conditions and to enhance wellbeing. I am Michael
Evers, Esq., a well-known leader in this arena for more than 30 years.
I first will provide some background information on the important
role played by a small agency buried within the National Institutes of
Health--The National Center for Complementary and Integrative Health
(NCCIH).
Back in 1987, the American Medical Association (AMA) was found
guilty of conspiring to destroy the chiropractic profession in the U.S.
by operating a ``Committee on Quackery'' for more than 20 years whose
goals were to first contain, and eventually eliminate chiropractic.\1\
Tension between conventional medical doctors and those promoting
``alternative medicine'' was at an all-time high. Zealots calling
themselves ``quackbusters'' openly collaborated with Federal and State
agencies to impede efforts to legitimize acupuncture, chiropractic,
naturopathy, and many other forms of ``natural healing.'' The Food and
Drug Administration (FDA), Federal Trade Commission (FTC), U.S. Postal
Service, and the National Association of Attorneys General were all
under the influence of these medical bigots, whose mission had morphed
from containment of chiropractic to total annihilation of anything
under the alternative medicine banner.
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\1\ Wilk v. American Medical Ass'n, 671 F. Supp. 1465, N.D. Ill.
1987, affirmed 895 F.2d 352, 7th Cir. 1990.
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As a young attorney, and adopted son of H. Ray Evers, M.D., one of
the leading holitic medical doctors calling for more openness and
cooperation between the varied professions, I surveyed the controversy
and concluded something had to happen at the Federal level to change
the dynamics of this ongoing battle. In 1987 I was commissioned by the
former Congressional Office of Technology Assessment (OTA) to prepare a
report on the legal constraints facing physicians and patients who opt
for cancer treatment alternatives outside conventional medicine.
Although the report was focused on alternative cancer treatments, I
addressed the broader question of how to bring alternative medicine
into the mainstream. My recommendation: create an office somewhere in
the Federal health complex to serve as a clearinghouse for evidence-
based information about these alternative therapies.\2\
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\2\ U.S. Congress, Office of Technology Assessment, Unconventional
Cancer Treatments, OTA-H-405 (Washington, DC: U.S. Government Printing
Office, September 1990.
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I began lobbying efforts aimed at Congress using simple, but
effective, grassroots methods to promote greater awareness and
acceptance of alternative medicine. Congress responded by creating the
Office Alternative Medicine (OAM) within the National Institutes of
Health (NIH) in 1991 and provided $2 million for its initial budget.
OAM began to develop a baseline of information on CAM use in the U.S.
In 1992 OAM officials conducted two groundbreaking CAM workshops in
Chantilly, Virginia examining such issues as research infrastructure,
research databases, and research methodologies.\3\
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\3\ Workshop on Alternative Medicine, Alternative Medicine:
Expanding Medical Horizons-A Report to the National Institutes of
Health on Alternative Medical Systems and Practices in the United
States (Bethesda: NIH, 1995).
---------------------------------------------------------------------------
Since vitamins and herbal medicines are mainstays employed by many
CAM practitioners, I next turned my attention to changing the way the
FDA regulated those products. I served as national legislative director
for the Nutritional Health Alliance, the industry-led coalition that
lobbied for passage of the Dietary Supplement Health and Education Act
(DSHEA). Congress enacted DSHEA in 1994, legally establishing the term
``dietary supplement'' and decreeing that FDA should regulate them like
foods and not drugs.\4\
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\4\ Dietary Supplement Health and Education Act of 1994, Public Law
No. 103-417, 08 Stat. 4325 (1994).
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Meanwhile, Congress kept increasing the OAM budget from the
original $2 million in 1991 to $19.5 million for fiscal year 1998. CAM
was now a legitimate topic among a growing number of academics who were
drawn to the new research dollars. Beginning in 1996, I led a 50-member
coalition effort to convince Congress to elevate the OAM to a Center
within NIH. Once again, Congress responded by establishing the National
Center for Complementary and Alternative Medicine (NCCAM) in 1998 and
appropriated $48.9 million to vastly expand its research funding
capabilities. The following year, researchers from eight top medical
schools across the country gathered to form the Consortium of Academic
Health Centers for Integrative Medicine. Harvard, Stanford, Duke and
others answered the call to conduct the badly needed research to find
out which, if any, CAM products and treatments worked, and for what
conditions.\5\
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\5\ Consortium of Academic Health Centers for Integrative Medicine.
Home page. Available at: https://imconsortium.org/home.html. Accessed
June 3, 2019.
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President Bill Clinton established the White House Commission on
Complementary and Alternative Medicine in March 2000 to advise the
Nation about how to go about conducting sound scientific research into
this field so consumers can make informed decisions about which
modalities to use and which to avoid. The Commission's 264-page report,
issued in March 2002, addressed ``the hopes and concerns of the
American people and the professionals who serve them. It acknowledges
and respects the American people's use of a variety of approaches to
healthcare and emphasizes the need to use the tools of biomedical
research to assess the perspectives and findings of a worldwide
spectrum of approaches, techniques and systems of healing.'' The
Commission underscored the fact that ``Federal support is particularly
needed for research on CAM products that are unpatentable and those
that are frequently used by the public but unlikely to attract private
research dollars.'' \6\
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\6\ White House Commission on Complementary and Alternative
Medicine Policy. Final report, March 2002. Available at: http://
govinfo.library.unt.edu/whccamp/pdfs/fr2002_document.pdf. Accessed June
3, 2019.
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In September 2002, the Institute of Medicine was commissioned to
convene another two-year study ``to explore scientific, policy, and
practice questions that arise from the significant and increasing use
of CAM therapies by the American public.'' It's 337-page report
published in 2005 thoroughly explored the emerging role CAM practices
were playing in the U.S. and the challenges facing researchers who
wanted to find answers using conventional scientific models.\7\
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\7\ Institute of Medicine. 2005. Complementary and Alternative
Medicine in the United States. Washington, DC: The National Academies
Press. Available at: https://doi.org/10.17226/11182. Accessed June 3,
2019.
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Funding for NCCAM continued to rise during these years until it
reached $122.7 million in fiscal year 2006. In the years since we have
seen real progress in our understanding of CAM. We've seen the term
evolve from ``alternative medicine,'' to ``complementary medicine,'' to
``integrative medicine,'' to the newest nomenclature--''integrative
health.'' When rigorously conducted scientific studies demonstrate that
a product or method works, it eventually gets ``integrated'' into
mainstream medicine.
U.S. consumers are buying dietary supplements and visiting
nonconventional healthcare practitioners in ever-increasing numbers.
Sixty-four percent used supplements in 2008. By 2017 that number had
risen to 76 percent.\8\ NCCAM estimates 38 percent of Americans use
some form of CAM.\9\ The number of medical schools now in the
Consortium has risen to 75.\10\ But sadly, congressional appropriations
for NCCAM have not kept up with the growing demand for answers. By the
time 2016 rolled around, funding had risen to only $129.8 million. Last
year funding increased to $146.5 million, but clearly more is needed.
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\8\ 2017 Council for Responsible Nutrition Consumer Survey on
Dietary Supplements, conducted Aug. 24-28 by Ipsos Public Affairs.
\9\ Nahin RL, Barnes PM, Stussman BJ. Expenditures on complementary
health approaches: United States, 2012. National Health Statistics
Reports. Hyattsville, MD: National Center for Health Statistics. 2016.
\10\ Consortium of Academic Health Centers for Integrative
Medicine. Home page. Available at: https://imconsortium.org/home.html.
Accessed June 3, 2019.
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They said ``Build it and they will come.'' Well, we did build it.
From the modest beginnings of the Office of Alternative Medicine in
1991 to today's National Center for Complementary and Integrative
Health, Congress has overseen the growth and expansion of research into
all sorts of questions that need answers. Nowhere is this more evident
than with today's opioid crisis. Americans are in pain. A new analysis
based on data from the 2012 National Health Interview Survey found that
an estimated 25.3 million adults (11.2 percent) experience pain--that
is, they had pain every day for the 3 months prior to the survey.\11\
Unfortunately, all too many of these pain sufferers turn to opioid
drugs for relief.
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\11\ Nahin RL. Estimates of pain prevalence and severity in adults:
United States, 2012. Journal of Pain. 2015;16(8):769-780.
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Pain is the most common reason Americans turn to CAM, and NCCIH is
leading the way to conduct research into discovering whether there are
effective alternatives to commonly prescribed pain medications. So far,
the following have been identified as leading candidates:
--Acupuncture and yoga for back pain
--Acupuncture and tai chi for osteoarthritis of the knee
--Massage therapy for neck pain
--Relaxation techniques for severe headaches and migraine
Can these examples of nonpharmacological pain management regimens
actually make a significant contribution to the Nation's opioid crisis?
We will never know unless research is conducted to provide an answer.
During its nearly 30 years within NIH, NCCIH has developed the talent
and skills necessary to conduct rigorous scientific research that will
produce reliable evidence to inform decisionmaking by the public, by
healthcare professionals, and by health policymakers regarding the use
and integration of complementary and integrative health approaches.
Since most of these therapies and substances are already in the public
domain and not eligible for patent protection like pharmaceuticals,
public funding is essential to support such research.\12\
---------------------------------------------------------------------------
\12\ White House Commission on Complementary and Alternative
Medicine Policy. Final report, March 2002. Available at: http://
govinfo.library.unt.edu/whccamp/pdfs/fr2002_document.pdf. Accessed June
3, 2019.
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On behalf of Project Cure's thousands of supporters, as well as all
Americans who want healthcare that is focused on the whole person and
makes use of all appropriate therapeutic approaches, healthcare
professionals, and disciplines to achieve optimal health and healing, I
ask that Congress not only continue its support for NCCIH, but that it
significantly increase funding in the 2020 Budget to $150 million or
more.
Sincerely.
[This statement was submitted by Michael Evers, President, Project
Cure, Inc.]
______
Prepared Statement of the Pulmonary Hypertension Association
the associations's fy20 l-hhs appropriations recommendations
_______________________________________________________________________
--$7.8 billion in program funding for the Centers for Disease Control
and Prevention (CDC)
--$750,000 for a pulmonary hypertension awareness and early
diagnosis campaign at CDC.
--At least $41.6 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).
_______________________________________________________________________
about pulmonary hypertension
Pulmonary Hypertension (PH) is high blood pressure that occurs in
the arteries of the lungs. It reflects the pressure the heart must
apply to pump blood from the heart through the arteries of the lungs.
As with a tangled hose, pressure builds up and backs up forcing the
heart to work harder and less oxygen to reach the body. PH symptoms
generally include fatigue, dizziness and shortness of breath with the
severity of the disease correlating with its progression. If left
undiagnosed or untreated it can lead to heart failure and death. In
recent years, innovative treatment options have been developed and
approved for PH. The effectiveness of current treatment options depends
on accurate diagnosis and early intervention.
about pha
Headquartered in Silver Spring, MD., the Pulmonary Hypertension
Association (PHA) is the country's leading PH organization. PHA's
mission is to extend and improve the lives of those affected by PH. PHA
achieves this by connecting and working together with the entire PH
community of patients, families, healthcare professionals and
researchers. The organization supports more than 200 patient support
groups; a robust national continuing medical education program; a PH
clinical program accreditation initiative; and a national observational
patient registry.
health resources and services administration
Due to the serious and life-threatening nature of PH, it is common
for patients to face drastic health interventions, including heart-lung
transplantation. To ensure HRSA can continue to make improvements in
donor lists and donor-matching please provide HRSA with $8.56 billion
in discretionary budget authority in fiscal year 2020.
centers for disease control and prevention
Please provide $750,000 for a PH Program at the Centers for Disease
Control and Prevention's (CDC). PH patients are often not diagnosed for
many years until the condition has reached a catastrophic stage.
Considering the availability of effective therapies for early-stage PH,
a CDC program focusing on education, awareness, and epidemiology
activities that promote early and accurate diagnosis of PH would not
only save countless lives but save the American healthcare system from
spending on avoidable, negative medical outcomes.
Investment in medical research and sustained scientific progress in
this area has led to fourteen Food and Drug Administration-approved
targeted treatment options for two forms of PH. When individuals are
diagnosed with PH quickly and begin appropriate therapy, their
prognosis and life-expectancy improve dramatically. However, it
currently takes an average of two and a half years to receive a
diagnosis and three quarters of patients have severe PH when they are
finally diagnosed. Without treatment, historical studies have shown a
mean survival time of 2.8 years after diagnosis for pulmonary arterial
hypertension (PAH). Patients with advanced PH cannot benefit as greatly
from available therapies and often face dramatic and costly medical
interventions, including 24-hour IV infused medication, increased risk
for hospitalization and in some cases heart-lung transplantation. Such
an effort would serve to complement PHA's own programs that support
education, awareness, and epidemiological activities to promote early
and accurate diagnosis and quality care for individuals with PH.
Improving awareness and recognition of PH would not only save lives,
but would reduce Federal healthcare costs related to emergency room
visits and hospitalization.
national institutes of health
Please provide NIH with meaningful increases--including at least
$41.6 billion in program funding in fiscal year 2020--to facilitate
expansion of the PH research portfolio so we can continue to improve
diagnosis and treatment. NHLBI and PHA have partnered on a
groundbreaking clinical study, the Redefining Pulmonary Hypertension
through Pulmonary Vascular Disease Phenomics (PVDOMICS) program (RFA-
HL-14-027 and RFA-HL-14-030). By collecting information from one
thousand participants with various types of PH, and 500 participants
without or at risk for PH, PVDOMICS hopes to find new similarities and
differences between the current WHO classifications of PH, which could
be a major step in learning about the disease and advancing patient
care. This research is intended to lead to identification of both
endophenotypes of lung vascular disease and biomarkers of disease that
may be useful for early diagnosis or for assessment of interventions to
prevent or treat PH.
proper health coverage and access
The PH community is concerned that the Centers for Medicare and
Medicaid Services (CMS) is allowing insurance payers to refuse to
accept charitable copay and premium assistance on behalf of patients
with complex, chronic and life-threatening conditions like PH. Because
of breakthroughs in research, PH patients are able to utilize life-
sustaining treatments that allow them to manage this potential fatal
condition and lead relatively normal lives. When patients are denied
access to financial assistance they are forced to choose between
necessities, between dramatically shortening their lives by giving up
medication in order to afford housing and food or continuing medication
while starting their families on the road to bankruptcy We aware of the
Subcommittee's continued requests for an explanation of this practice
targeting rare disease patients. We ask that this Subcommittee once
again ask CMS to explain this decisions and also encourage them to fix
this problem that is greatly affecting the rare disease community.
patient perspectives
Before developing pulmonary hypertension, Doug was an architect
specializing in historic preservation. Being an architect was the only
thing he had ever wanted to do ``when he grew up.'' Doug spent 2 years
seeking an accurate diagnosis for his shortness of breath. During that
time, he was misdiagnosed with depression, sleep apnea, altitude
sickness and asthma. Ultimately Doug was diagnosed and treated, however
he had to give up his career due to his PH.
Edith is Medicare recipient in her 70s who was diagnosed with
pulmonary hypertension about 5 years ago. Edith says, ``If I didn't
have the medication I wouldn't be around. I would have passed away. And
I don't want to do that because I have great grandchildren and I want
to see them grow up.'' Edith's husband adds, ``without her medications
she cannot breathe. Without these drugs I would lose my wife in a
day.''
Aine's parents heard over and over that there was nothing wrong
with their daughter. When they relayed her shortness of breath with
exertion to physicians they were ignored or told she was just anxious.
Aine was 8 years-old when she died.
Thank you again for your consideration of the PH community's
priorities as you develop the fiscal year 2020 L-HHS Appropriations
bill.
______
Prepared Statement of Refugee Council USA
Chairman Blunt, Ranking Member Murray, and members of the
subcommittee, thank you for this opportunity to submit these funding
and oversight recommendations for fiscal year 2020 on behalf of the 25-
member organizations of Refugee Council USA (RCUSA).\1\ Our coalition
is dedicated to refugee protection, welcome, and integration,
representing the interests of refugees, refugee families, and
volunteers and community members across the country who support
refugees and resettlement. RCUSA recommends fiscal year 2020 funding
levels of $2,565,201,000 for the Department of Health and Human
Services' Refugee and Entrant Assistance (REA) account.
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\1\ A list of RCUSA member organizations can be viewed at
RCUSA.org.
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The REA account funds the Office of Refugee Resettlement (ORR)
within the Administration of Children and Families (ACF). ORR funding
provides critical Federal investments in the States and local
communities that welcome refugees and is a crucial component \2\ of
fostering refugee integration and paving the way for the economic
benefits that refugees provide to communities. In addition to new
arrivals, ORR funding provides essential services to newly arrived
refugees, as well as refugees that have already been resettled to the
U.S. Besides refugees, ORR serves unaccompanied refugee minors,
asylees, Cuban and Haitian entrants, Special Immigrants Visa (SIV)
holders from Afghanistan and Iraq who served the U.S. mission in those
countries, victims of human trafficking, survivors of torture, and
unaccompanied children.
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\2\ The initial component of welcome comes through the Reception
and Placement Program, administered through the Bureau of Population,
Refugees, and Migration (PRM) of the State Department in collaboration
with the nine agencies and their affiliates.
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When a refugee arrives in the U.S., he or she is supported by one
of nine voluntary nonprofit resettlement agencies. Through local
affiliates across the country, the agencies help the newcomers with
community orientation, English learning, school enrollment for
children, and finding employment. With this crucial ORR support,
refugees are not only able to support themselves and their families but
they also become contributors to their new communities, integrating
with and bringing innovation to our neighborhoods and communities. The
following highlights critical programs within the REA account, but is
not exhaustive:
Transitional & Medical Services
Matching Grant Program: The Matching Grant Program, a public-
private partnership, is ORR's most successful program to help refugees
achieve early self-sufficiency. It empowers refugees and other eligible
individuals to secure early employment and become self-sufficient
within 6 months without needing to access Federal or State assistance
programs. The program leverages public funds with private donations at
a 2:1 ratio, with nongovernmental agencies working hand-in-hand with
local communities to match Federal Government contributions with
private resources.
Refugee Support Services (RSS)
In fiscal year 2018, the Administration merged the administration
of Refugee Social Services, Refugee Health Promotion, and Targeted
Assistance into one new program, Refugee Support Services. RSS supports
initial employability services and other integration services that
address initial barriers to employment. It is provided to States and
non-profit organizations based on formula pertaining to anticipated
refugee and other arrivals and based on competitive grants.
Additionally, school impact funding, provided through a formula in the
RSS program, supports school districts with the funds necessary for
activities for refugee children, like English language training, that
will lead to their effective integration and education. RCUSA urges
that RSS remain at at least the fiscal year 2019 enacted level.
Survivors of Trafficking
Since the passage of the Trafficking Victims Protection Act in
2000, victims of human trafficking have received case management
services through HHS's partnership with NGO providers, including
assistance obtaining and referrals to medical and psychological
treatment, housing, educational programs, life skills development,
legal services, and other assistance. Funding is also utilized to
promote public awareness, training, and coalition building to raise
awareness about human trafficking among law enforcement, social
services, medical staff, and other potential first responders, in
addition to other faith-based and community groups. These grants are
crucial to providing victims, including children, integrative aid and
services once they have been identified as a victim of trafficking.
Increasing funding to $20 million for both the domestic and foreign-
born survivor accounts is requested to adequately serve trafficking
survivors. This funding is critical due to the successful increases in
victim identification efforts. In fact, there has been an 843 percent
increase in the number of foreign-born individuals served by the
program from 2003 to fiscal year 2016.
Survivors of Torture
The Torture Victims Relief Act authorizes funding for domestic
programs that address the long-term impacts of torture on survivors and
their families. Effective rehabilitation programs address a survivor's
physical, psychological, legal and social needs to reduce their
suffering as quickly as possible. RCUSA's proposed $28 million for
torture survivor assistance reflects that many treatment programs have
long wait lists, and that--at current funding levels--demand will
continue to exceed availability as programs serve not only refugees,
but also (and in some cases predominantly) asylees and asylum seekers.
Unaccompanied Children (UC)
ORR provides children in its care with food, shelter, and clothing
as well as educational, medical, mental health, and case management
services. For a limited number of children, ORR provides family
reunification services by social service providers; specifically,
``home studies'' to help ensure children are released into safe
placements and ``post-release services'' to facilitate family and
community integration after reunification. Family reunification
services are an important means of assuring that children are not
released to situations of abuse, neglect, or human trafficking. They
also facilitate the continued well-being and adjustment of the children
after reunification, including helping families to understand the
child's legal obligations and providing support to the families
themselves as the children are integrated into their new communities.
These practices not only promote child safety, but they can help reduce
the need for involvement with the public child welfare system post-
release. RCUSA supports baseline funding of at least $1,800,000,000 for
the UC line item, with an emphasis on expanded funding for programs
that promote successful family reunification and stability, which serve
the best interests of the children. RCUSA also supports the expansion
of permanent bed capacity.
ORR Contingency Fund
Many times in the last decade, ORR has had to reprogram funds from
within ORR or the LHHS Secretary has transferred in funds from outside
ORR to maintain vital services for refugees, unaccompanied children,
and other populations of concern. For example, this occurred in 2012
($115 million), in 2014 ($94 million), in 2018 ($446 million), and
already this year ($385 million). These major shortfalls in the last
decade demonstrate that ORR and the vulnerable populations that it
serves need stronger financial footing. To avoid future reprogramming
and greater financial stability, RCUSA supports the President's request
for a $2,000,000,000 UC contingency fund for use over 3 years and urges
Congress to reserve $100 million of that contingency fund for all
populations served by ORR.
In closing, RCUSA urges Congress to adopt the funding levels
detailed below and to urge the Administration to maintain and
adequately fund a robust national and local refugee resettlement
network in support of the aforementioned goals. Thank you for
considering our funding recommendations for fiscal year 2020.
\3\ In fiscal year 2018 the Administration merged the
administration of Refugee Social Services and Targeted Assistance into
one new program, Refugee Support Services; Congress has not allocated
less than $200 million cumulatively for these three programs in at
least 15 years, not even taking inflation into account. Congress also
continues to require funding for the Refugee Health Promotion program
and ORR is providing it as an RSS set aside. The fiscal year 2019
Senate report indicates that in fiscal year 2018 the Committee accepted
the administration's proposal to combine all three programs but
continues to expect that activities previously funded under these three
lines will continue at the same level as before the consolidation.
\4\ An increase is requested to serve trafficking survivors, given
the 962 percent increase in the number of victims identified and
certified in need of services since 2002, based on the 2002 ORR report
to Congress and the 2016 Trafficking in Persons (TIP) report.
\5\ See #2.
\6\ RCUSA commends as a step in the right direction the $3.265
million increase in fiscal year 2019 to aid victims of torture, and yet
the services gap remains extraordinary. Approximately 44 percent of the
program's beneficiaries-refugees, asylees and asylum seekers-are
torture survivors. Even with the increased appropriation many programs
have long wait lists and torture survivor populations across the
country have no access to services at all. A $28,000,000 appropriation
at least would likely match the funding necessary to rebuild the lives
of those survivors who will be admitted permanently to the U.S. in
fiscal year 2020.
\7\ RCUSA urges funding at a level inclusive of both the fiscal
year 2018 enacted amount and the total transferred to accommodate UC
expenditures during fiscal year 2018 and in acknowledgement of the $385
million fiscal year 2019 transfer. RCUSA also supports continued
funding for expansion of permanent bed capacity and increased family
reunification services.
[This statement was submitted by Lacy Broemel, Refugee and
Immigration Policy Advisor, The Episcopal Church, Refugee Council USA.]
______
Prepared Statement of the Research Work Group
On behalf of the Federal AIDS Policy Partnership's Research Working
Group, we thank Chairman Senator Graham, Ranking Member Senator Leahy
and members of the Committee, for the opportunity to submit testimony
to the Senate LHHS Subcommittee on fiscal year 2020 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, patient, 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 build on the momentum of the House LHHS subcommittee
request of $149 million increase for HIV research by recommending a
fiscal year 2020 budget request level of at least $41.6 billion for the
NIH, and ask that at least $3.450 billion be allocated for HIV research
at the NIH in fiscal year 2020.
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, 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 antinfectives
for HIV and HCV receiving the second largest fraction of those
approvals. Additionally, NIH support was crucial in the development of
pre-exposure prophlaxis (PrEP), a significant and groundbreaking HIV
prevention tool that is upwards of 99 percent effective in preventing
sexual transmission.
These developments were made possible through the U.S. government's
strong support for NIH's HIV research portfolio, and hold great promise
for significantly reducing HIV infection rates and providing more
effective treatments for those living with HIV/AIDS in the coming
decade. Despite such advances, there remain 1.1 million HIV people
living with HIV in the U.S. in 2015. Each year this number increases.
In 2017, 38,739 people in the U.S. received an HIV diagnosis. HIV
research advances at the NIH hold the potential to end the AIDS
epidemic, as well as update prevention approaches and improve outcomes
along the treatment cascade--a cornerstone of the Trump
Administration's recently announced initative to End the HIV Epidemic
in the U.S. The fiscal year 2020 President's Budget has proposed Ending
the HIV Epidemic: A Plan for America to reduce new infections by 75
percent in the next 5 years and by 90 percent in the next 10 years,
averting more than 250,000 HIV infections in that span. Yet, the
administration's fiscal year 2020 budget proposal ignores these
significant contributions made by NIH and the need for a strong HIV/
AIDS research agenda in the End the HIV Epidemic intiative with deep
cuts in funding made to the Office of AIDS Research (OAR) that places
current studies, including for a vaccine and a cure for HIV, in peril.
The fiscal year 2020 President's Budget request for the NIH HIV
research program at OAR is $2,621.2 million, a decrease of $423.9
million or 13.9 percent compared to the fiscal year 2019 levels. The
proposal includes substantial cuts (see table below) to HIV research
into prevention, cure and HIV aging research. In particular, our
Nation's research agenda in pursuit of a cure for HIV is under
significant threat in the budget proposal, despite being the smallest
part of the overall OAR budget. Scientific progress on cure and vaccine
research remains steady and iterative, and cutting research funding at
this juncture will only lengthen the time horizons or completely impede
these studies from realizing the potential of these investments. To
truly achieve an end to the HIV epidemic, we need a vaccine and cure
alongside our current slate of therapeutics and prevention modalities.
More importantly, investment in these critical areas is necessary to
``finish the job'' and cap the incredible progress that has been made
to date thanks to Federal Government spending on HIV/AIDS research. In
sum, these cuts would do harm to the HIV research agenda and the health
of people living with HIV. We urge the subcommittee to reject these
cuts.
Furthermore, since 2003, funding for the 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.
The real value of the increases prior to 2003 has been precipitously
reduced because of the relatively higher inflation rate for the cost of
research and development activities undertaken by NIH. According to the
Biomedical Research and Development Price Index--which calculates how
much the NIH budget must change each year to maintain purchasing
power--between fiscal year 2003 and fiscal year 2017, the NIH budget in
constant dollars according to BRDI will have declined by more than a
third. The cuts proposed in President's budget only further widens the
gap, in which even larger funding increases would be required to make
up the value in research dollars lost.
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. Increasing the NIH's
HIV research budget yields significant scientific gains, both for HIV
and other diseases, produces economic benefits for our Nation's
workforce, and enhances community engagement in research. 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 also add value by seeding ideas later
taken up in industry partnerships and creating innovation incubators
for important medical advances which have significant health impact.
Major advances over the last few years in HIV treatment and prevention
demonstrate that adequately resourced NIH programs can transform our
lives. Federal support for HIV/AIDS research has also led to new
treatments for other diseases, including cancer, heart disease,
Alzheimer's, hepatitis, osteoporosis and a wide range of autoimmune
disorders.
Robust funding for NIH overall enables research universities to
pursue scientific opportunity, advance public health, and create jobs
and economic growth. In every State across the country, the NIH
supports research at hospitals, universities, private enterprises and
medical schools. This includes the creation of jobs that will be
essential to future discovery. Sustained investment is also essential
to train the next generation of scientists and prepare them to make
tomorrow's HIV discoveries. NIH funding puts 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. Strong, sustained NIH funding is a critical
national priority that will foster better health and economic
revitalization.
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 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. Tomorrow's scientific and medical breakthroughs depend on your
vision, leadership and commitment towards robust NIH funding this year.
Congress should ensure the Nation does not delay vital HIV/AIDS
research progress. We must protect HIV/AIDS research funding to sustain
research capacity and maintain our worldwide leadership in HIV/AIDS
research and innovation.
To that end, we urge the subcommittee to consider a needed increase
to the overall fiscal year 2020 budget request level of at least $41.6
billion for the National Institutes of Health (NIH) consistent with the
request of the Ad Hoc Group for Medical Research. We also urge the
Senate subcommittee to follow the House LHHS subcommittee to match or
exceed their fiscal year 2020 recommendation of $149 million in
increased funding for HIV research. While this increase gets us closer
to meeting the recent Trans-NIH AIDS Research By-Pass Budget Estimate
for fiscal year 2019, we ask the committee that at least $3.450 billion
be allocated for HIV research at the NIH in fiscal year 2020, an
increase of $450 million. We also urge the subcommittee to consider
approaches to ensure HIV research budget receives increases alongside
important and intersecting biomedical research at NIH. The fiscal year
2020 President's Budget request includes reallocation of $6 million in
existing Centers for AIDS Research (CFAR) funding to support this
initiative. We believe that CFARs are suited well to accomplish this
goal, but that funding must be new funding for this initiative to
succeed, and will require a significant increase beyond this proposed
level. We urge the subcommittee to direct specific and increased CFAR
funding for this purpose.
In conclusion, the RWG calls on Congress to continue the bipartisan
Federal commitment towards combating HIV as well as other chronic and
life--threatening illnesses by increasing funding for NIH in fiscal
year 2020. 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 Research!America
On behalf of Research!America and our alliance, which advocates for
science, discovery, and innovation to achieve better health for all,
thank you for this opportunity to share our views on fiscal year 2020
appropriations under the jurisdiction of the Subcommittee on Labor,
Health and Human Services, Education, and Related Agencies. We are
grateful that for fiscal year 2019, the committee not only bolstered
the base budgets of the National Institutes of Health (NIH), the
Centers for Disease Control and Prevention (CDC), and the Agency for
Healthcare Research and Quality (AHRQ), but also provided dedicated
funding for escalating threats such as the opioid crisis and antibiotic
resistance and unique needs like the development of a universal flu
vaccine.
The National Institutes of Health Drives the Discovery of New
Treatments and Cures
The NIH is the world's leading funder of basic biomedical research,
and Americans recognize the value this research delivers. Since 1992,
Research!America has commissioned national and State-level surveys to
gauge public sentiment on issues related to research and innovation.
According to a national survey we commissioned in January of 2019, 84
percent of Americans believe it is important for Congress and the
President to assign a high priority to faster medical progress. As it
stands, our Nation spends about 5 cents of each health dollar on
research to prevent, cure and treat disease. Some 63 percent of
Americans say that this level of investment is not enough, an 11
percentage point increase from just last year. Americans want medical
progress, and they want the U.S. to do more to drive it.
More than 80 percent of NIH funding is awarded through almost
50,000 competitive grants to more than 300,000 researchers at over
2,500 universities, medical schools, and other research institutions in
every State and around the world. Research supported by NIH is
typically at the early, non-commercial stages of the research pipeline;
therefore, NIH funding complements critical private sector investment
and development while delivering substantial economic benefits. Basic
research funded by the NIH fuels the entry of new drugs into the
market, providing an estimated return to public investment of $1.43 for
every dollar invested. The Human Genome Project has produced $1
trillion of economic growth--a 178-fold return on investment. The NIH
also plays an essential role in educating and training America's future
scientists and medical innovators by sponsoring training grants and
fellowships for biomedical- and health-focused graduate and medical
students, postdoctoral researchers and young investigators--a pivotal
investment in America's future research workforce.
NIH advances the interests of America and Americans in other
crucial ways. For example, the All of Us Research Program at NIH is
advancing the largest clinical trial in our Nation's history to
accelerate precision medicine and advance a host of other medical and
health research objectives. The HEAL Initiative is conducting
interdisciplinary research to end the opioid epidemic. The National
Institute of Aging supports research on the health and well-being of
older Americans and, through its Alzheimer's Disease Education and
Referral Center, provides information on age-related cognitive changes
and neurodegenerative disease. The Accelerating Medicines Partnerships
unites the best of the private and public sectors, streamlining
collaboration between the NIH, FDA, life science companies, and non-
profit organizations working to develop treatments for Alzheimer's,
Type 2 diabetes, rheumatoid arthritis, lupus, and Parkinson's disease.
The National Cancer Institute's Cancer Moonshot aims to accelerate
research and improve our ability to prevent and detect cancer. NIH also
plays a pivotal role in the development of countermeasures when
epidemics and other global public health threats emerge.
We believe it is in the strategic interests of the United States to
increase funding for NIH to at least $41.6 billion in fiscal year 2020,
an increase of $2.5 billion. Research!America believes this powerful
infusion of funds is merited by the magnitude of our health challenges,
the tangible and intangible costs of inaction, and the extraordinary
return on medical progress.
The Centers for Disease Control and Prevention Safeguards the
Nation's Health
CDC is tasked with protecting and advancing the Nation's health,
and over the past 70 years it has worked diligently to thwart deadly
outbreaks, costly pandemics and debilitating disease. Moreover, CDC
plays a key role in research that leads to life-saving vaccines,
bolsters our Nation's defense against and response to bioterrorism, and
improves health tracking and data analytics. CDC's work has benefited
America and Americans in myriad ways, including eliminating the endemic
spread of rubella within the United States, playing a lead role in
addressing the growing threat of antibiotic resistance, dramatically
reducing the incidence of child lead poisoning, providing accurate and
accessible health information, tracking and containing dangerous
pandemic and epidemics, reducing deaths from motor vehicle accidents,
achieving a significant expansion of newborn hearing tests and other
screening measures, helping people avoid leading causes of death, and
preventing millions of hospitalizations.
Ebola, Zika, dengue fever, influenza, the opioid epidemic, measles
outbreaks, and other emerging health threats have shown just how
critical CDC is to our Nation, and have also revealed the enormity of
the challenge the agency faces as it works to safeguard American lives.
To protect our Nation, CDC scientists must be on the ground fighting
public health challenges wherever and whenever they occur. But there is
an imbalance between the funding provided to CDC and its increasingly
growing mission demands. We request that CDC receive at least $7.8
billion in fiscal year 2020, an increase of $.5 billion, to carry out
its crucially important responsibilities.
AHRQ Empowers Our Nation to Spend Healthcare Dollars Wisely
AHRQ is the lead Federal agency responsible for ensuring medical
progress translates into better patient care. The value of medical
discovery and development hinge on smart healthcare delivery. Out of
the $3.6 trillion in annual spending on healthcare, an estimated 30
percent could be prevented by addressing errors and inefficiency. AHRQ-
funded research identifies and addresses this diversion of limited
healthcare dollars, empowering patients to receive the right care at
the right time in the right settings. For example, AHRQ-funded research
has helped identify methicillin-resistant Staphylococcus aureus (MRSA)
in long-term care facilities as part of an infection control strategy
that limits the exposure of MRSA-free residents in order to address the
rise (1 out of every 25) of hospital patients affected by healthcare-
associated infections. AHRQ-funded research has played a pivotal role
in reducing hospital-acquired conditions by nearly 1 million from 2014-
2017, saving lives and $7.7 billion in healthcare costs.
AHRQ's evidence-based tools and resources have not only helped
hospitals to reduce healthcare-associated infection rates but has been
crucial in shrinking emergency room wait times from hours to minutes,
improving patient safety, promoting health literacy, and reducing
patient falls. From ensuring new medical discoveries reach doctors and
patients as quickly as possible in rural as well as urban areas, to
quantifying the scope of the opioid epidemic, AHRQ serves many critical
purposes. If we underinvest in AHRQ, we are inviting unnecessary
healthcare spending and squandering the opportunity to ensure patients
receive the quality care they need. We ask that you provide at least
$460 million for AHRQ in fiscal year 2020, an increase of $122 million.
We appreciate your consideration of our funding requests and thank
you for your stewardship over these critically important Federal
spending priorities.
Sincerely.
[This statement was submitted by Mary Woolley, President and CEO,
Research!America.]
______
Prepared Statement of the Restless Legs Syndrome Foundation
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, as you work to develop the fiscal year 2020 Labor-
Health and Human Services Appropriations bill, thank you for
considering the views of the community of physicians, researchers,
patients, and caregivers affected by Restless Legs Syndrome (RLS).
Please keep the needs of this community in mind, especially as you
continue to work to address the opioid crisis.
about the rls foundation
The Restless Legs Syndrome Foundation is a nonprofit Sec. 501(c)(3)
organization dedicated to improving the lives of men, women, and
children living with this often-devastating neurological condition. The
Foundation works to increase awareness, improve treatments, and support
research to find a cure. From a few volunteers meeting in a member's
home in 1992, the Foundation has grown steadily; it now has members in
every State, local support groups, and a track record that includes
over $1.8 million provided to support fundamental 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 2020 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
$2.5 billion funding increase for fiscal year 2020 to bring NIH's
budget up to $41.6 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.
RLSF joins the broader public health community in thanking Congress
for providing the Centers for Disease Control and Prevention (CDC) with
a modest funding increase for fiscal year 2019 and in requesting a
subsequent increase of at least $500 million in discretionary resources
for fiscal year 2020 to bring total agency funding up to a minimum of
$7.8 billion annually.
Please also provide a dedicated, line-item appropriation of at
least $250,000 to reinvigorate crucial sleep activities at CDC. Despite
the success and importance of the National Healthy Sleep Awareness
Project, this critical program (which had been funded for years with
discretionary resources) was halted by CDC in fiscal year 2019 due to a
stated lack of available funds.
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 Sandra Katanick
from Florida, who serves on the RLS Foundation's Board of Directors:
"I have suffered with RLS for almost 15 years following a total
knee replacement. I used to be on Requip, but following my
augmentation, this medication only makes my symptoms worse. For 5
years, I have been fortunate to be on a very effective treatment
regimen that includes a low dose of Oxycontin at bedtime. In the last
year, I moved to Florida and have yet to find a physician willing to
continue this treatment, despite my efforts to educate them by sharing
clinical guidelines on safe and proper prescribing of opioids for RLS.
I am worried that I may lose the ability to treat my disease and suffer
needlessly, because State and Federal policies are being misapplied to
prevent the appropriate use of opioids to treat RLS.''
Sandy's story is emblematic of the need for increased medical
research, access to treatment, professional education, and public
awareness. Thank you for your time and consideration of our requests.
[This statement was submitted by Karla M. Dzienkowski, RN, BSN,
Executive
Director, Restless Legs Syndrome Foundation.]
______
Prepared Statement of Rotary International
Chairman Blunt, members of the Subcommittee:
Rotary appreciates the opportunity to encourage continuation of
funding for fiscal year 2020 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), which is an unprecedented model of
cooperation among national governments, civil society and UN agencies
working together to reach the most vulnerable children through the
safe, cost-effective public health intervention of polio immunization.
We appeal to this Subcommittee for continued leadership to ensure we
seize the opportunity to conquer polio once and for all. Rotary
International requests that $176 million be provided for the polio
eradication activities of the CDC--level funding--to ensure we end
polio transmission, protect polio free areas, and leverage the
resources developed through this global effort for value-added impact.
The United States is the leading public sector donor to the Global
Polio Eradication Initiative. The 325,000 members of Rotary clubs in
the US appreciate the United States' generous support and longstanding
leadership. Rotary, including matching funds from the Gates Foundation,
has contributed more than US $1.8 billion and thousands of hours of
volunteer service to protect children from polio. Rotarians are
committed to fundraising for the program until the world is certified
polio free. Continued US leadership remains vital to achieve the goal
of a polio free world and ensure that the investment in polio
eradication infrastructure and resources lives on to benefit other
health efforts.
progress in the global program to eradicate polio
Since the launch of the GPEI in 1988, eradication efforts have led
to more than a 99 percent decrease in cases. Thanks to this committee's
support, only two countries confirmed cases of wild polio in 2018:
Afghanistan and Pakistan. Wild poliovirus type 1 caused all the wild
virus cases and these are found in high risk areas of Afghanistan (21
cases) and Pakistan (12 cases). Nigeria, which experienced an outbreak
in 2016, has not confirmed any new cases since August of 2016 despite
humanitarian crises. Continued progress to reach every child and stop
polio virus transmission in these most complex environments reinforces
the fact that polio eradication is feasible. While the primary focus of
global efforts is on stopping transmission of endemic polio, this is
followed closely by work to immunize the more than 400 million children
in up to 70 countries which remain at risk for polio outbreaks. Since
2001, more than 40 countries which were polio free experienced
outbreaks. While these outbreaks were stopped, they are a reminder that
as long as the wild polio virus circulates anywhere, children
everywhere, including the United Sates, remain at risk and must
continue to be protected through immunization.
Only wild poliovirus type 1 (WPV1) is still circulating. Type 2
(WPV2) was declared eradicated in September 2015. Type 3 (WPV3) has not
been seen since November 2012. Eradicating strains of the polio virus
is further proof that a polio-free world is achievable.
cdc's vital role in global polio eradication progress
The United States is the leader among donor nations in the drive to
eradicate polio globally. Congressional support has enabled CDC to
provide the following:
Provide Technical Leadership and Capacity Building
--Provide $ 66.6 million to WHO for surveillance, technical staff and
immunization activities' operational costs, primarily in
Africa; and $3 million to UNICEF to support operational costs
for National Immunization Days (NIDs) in all polio-endemic and
outbreak countries.
--Provide $ 28.3 million to UNICEF for the expansion of a Community
Based Vaccinator Program in Pakistan that now includes over
24,000 workers (nearly 90 percent of which are women) who reach
4 million children annually with approximately 60 million doses
of oral polio vaccine, and 2.9 million doses of inactivated
polio vaccine.
--Train global virologists in advanced poliovirus research and public
health laboratory support. CDC's Atlanta laboratories serve as
a global reference center and training facility.
--Support the international assignment of 19 technical staff on
direct, 2-year assignments to WHO and UNICEF to assist polio-
endemic and polio-reinfected countries.
--Provide technical leadership through three international polio
consultants in Pakistan and one in Afghanistan; and build
capacity through eight national polio consultants in
Afghanistan.
--Collaborate with the Pakistan Ministry of Health, WHO and USAID's
mission in Islamabad to train and deploy 88 national
epidemiologists from CDC's Field Epidemiology Training Program
(FETP) to the highest risk districts for circulation of wild
polio virus to improve the quality of surveillance and
immunization activities there and to strengthen routine
immunization systems.
--Assign 489 public health professionals who completed CDC's Stop
Transmission of Polio (STOP) training program to support
critical national immunization functions in 42 at-risk
countries in 2018. In 2019, the STOP program has already
deployed 254 professionals to 42 countries. The second STOP
team is being finalized for training and deployment in June
2019.
--Train 230 staff at the Local Governing Area level in the highest
risk States of Nigeria in CDC's National STOP program. These
staff play a key role in interrupting transmission of wild
polio. Nigeria's polio legacy planning will transition those
workers to build lasting improvements in Nigeria's immunization
system.
The CDC also provides the following global surveillance, virologic
and other technical expertise:
--Provides expertise in virology, diagnostics, and laboratory
procedures, including quality assurance, and genomic sequencing
of samples obtained worldwide.
--Houses the leading specialized polio reference lab in the world
which provides the largest volume of operational (poliovirus
isolation) and technologically sophisticated (genetic
sequencing of polio viruses) lab support to the 145
laboratories of the global polio laboratory network.
--Offers programmatic guidance and expertise for global polio
eradication by participating in technical advisory groups, EPI
manager and other key global meetings.
--Provides scientific and technical expertise to WHO on research
issues regarding: (1) laboratory containment of wild poliovirus
stocks following polio eradication, and (2) when and how to
stop or modify polio vaccination worldwide following global
certification of polio eradication.
--Leads the efforts to raise awareness of the importance and urgency
of transition planning amongst donors, country governments and
other stakeholders to begin polio legacy planning to ensure
that key polio functions, including immunization, comprehensive
vaccine-preventable disease surveillance, outbreak response and
biocontainment, will be in place post-eradication.
In 2018, CDC also collaborated with Voice of America (VOA) to
produce programs with scientifically accurate information about polio
and the need for vaccinations to fight against early childhood
diseases. The programs address identified vaccine issues and concerns
through radio and television programming formats, including PSA's,
radio dramas (if feasible), and field news reports to millions of
Pashto-speaking Afghans and Pakistanis. VOA also trains journalists on
``best practices'' in covering polio, tracks stories written and
completes data collection for monitoring and evaluation.
fiscal year 2020 budget request
We respectfully $176 million in fiscal year 2020 for the polio
eradication activities of CDC, the level appropriated by Congress in
fiscal year 2019. With Congress' continued support for polio
eradication in fiscal year 2020, CDC's priorities are to stop wild
transmission in the remaining polio endemic countries and countries at-
risk by strengthening surveillance, reaching all children with vaccine,
and rapid case response. CDC will also work to measure and improve
countries' abilities to use inactivated polio vaccine to protect their
populations from polioviruses, with a particular focus on hard to reach
populations at increased risk for not receiving inactivated polio
vaccine. CDC will also continue to work to strengthen surveillance for
polioviruses in all areas currently below certification standard. CDC
has also begun planning for a post-polio transition to advance
additional global vaccine-preventable diseases (VPD) control and
elimination/eradication targets as outlined in CDC's Strategic
Framework for Global Immunization 2016-2020.
benefits of polio eradication
Since 1988, 18 million people who would otherwise have been
paralyzed are walking because they have been immunized against polio.
Tens of thousands of public health workers have been trained to manage
massive immunization programs and investigate cases of acute flaccid
paralysis. Cold chain, transport and communications systems for
immunization have been strengthened. The global network of 145
laboratories and trained personnel established by the GPEI also tracks
measles, rubella, yellow fever, meningitis, and other deadly infectious
diseases and will do so long after polio is eradicated.
In financial terms, the global effort to eradicate polio has saved
more than $27 billion in health costs since 1988. Polio eradication is
a cost-effective public health investment with permanent benefits. On
the other hand, as many as 200,000 children could be paralyzed annually
in the next 10 years if the world fails to capitalize on the more than
$16 billion already invested in eradication. Success will ensure that
the significant investment made by the US, Rotary International, and
many other countries and entities, is protected in perpetuity.
[This statement was submitted by Dr. Anne L. Matthews, Chair,
Rotary's Polio Eradication Advocacy Task Force.]
______
Prepared Statement of the Ryan White Medical Providers Coalition
Thank you for reviewing my testimony for the record. My name is Dr.
Ernie-Paul Barrette, and I serve as Medical Director of the HIV Clinic
for the Washington University School of Medicine, in St. Louis,
Missouri, the largest providers of medical care for patients with HIV/
AIDS in Missouri. I am pleased to submit testimony on behalf of the
Ryan White Medical Providers Coalition (RWMPC) of the HIV Medicine
Association (HIVMA), of which I am a member. HIVMA represents over
6,000 HIV clinicians and researchers. The 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).
I thank the Subcommittee for maintaining funding for the Ryan White
Program over the previous decade of constrained budgets and limited
resources. However, during the past decade, science and medicine have
improved, and now expanding the Ryan White Program could help end the
domestic HIV epidemic. To advance the Nation toward this goal, RWMPC
and HIVMA request both $225.1 million for Part C of the Ryan White
Program (a 10 percent or $24 million increase over current funding), as
well as the new fiscal year 2020 funding the Administration requested
for the Ending HIV as an Epidemic (EtE) initiative to expand access to
HIV prevention, care, and treatment. While RWMPC and HIVMA support
these EtE funding requests, it is essential that all funding for the
EtE initiative be new, additional funding and not a repurposing of
already stretched resources. The EtE proposal includes $291 million
across several HHS agencies and programs, including $120 million for
HRSA that would support $70 million for the Ryan White Program to
provide additional HIV care and treatment, as well as $50 million for
the Bureau of Primary Health Care to support HIV prevention services,
including providing Pre-Exposure Prophylaxis (PrEP), a once-a-day
medication proven to prevent HIV infection.
Washington University in Missouri is Leading the Way
Washington University's Ryan White-funded clinic has served as the
leading source of HIV primary care in Missouri for over 30 years. Each
year our Ryan White clinic serves more patients with more complex
needs. In 2018, the HIV Clinic at Washington University experienced a 5
percent increase from 2017 in its number of patients living with HIV.
Over the last thirteen years the clinic has seen a 103 percent increase
in patients with HIV. Additionally, approximately 1 in 3 patients were
fully uninsured and relied heavily on the Ryan White Program to fund
their care, and a significant portion experienced housing insecurity.
Washington University, like most Ryan White Part C clinics, also
receives support from other parts of the Ryan White Program that help
us provide medications and services including additional medical care,
dental services, mental health services, peer health coaches, case
management, and transportation--all key components of the comprehensive
Ryan White care model that produces outstanding outcomes. Additionally,
Washington University provides dedicated services for women who are
pregnant and for patients re-entering care after being out of care for
more than 1 year. Both services include nurses and social workers that
accompany patients to appointments and do home visits during these
critical times.
Washington University also provides Pre-Exposure Prophylaxis (PrEP)
services. This critical HIV prevention tool is integrated as part of
prevention and primary care delivery. However, more support for the
PrEP program is needed to scale up these services to meet patient and
community needs.
Due to increased rates of hepatitis C infections, which in part are
driven by the opioid epidemic, the Washington University HIV Clinic has
started a hepatitis C clinic in order to treat this infection earlier.
In addition, the Washington University HIV Clinic has been a leader in
expanded HIV testing to identify cases, improved linkage-to-care
services, and use of social media to improve engagement, retention, and
medical outcomes among youth and young adult patients. However, the
opioid epidemic is hitting Missouri and other parts of the U.S. hard.
Washington University patients struggle not only with HIV, but also
with substance use disorder and related infectious diseases, such as
hepatitis C. In fact, Missouri has seen a recent dramatic increase in
cases of hepatitis C.\1\
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\1\ Missouri Department of Health and Senior Services. Online at:
https://health.mo.gov/data/hivstdaids/pdf/HepCKnownRisksFactSheets.pdf.
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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.
Access to Ryan White Part C clinics has helped to dramatically decrease
AIDS-related mortality and morbidity over the last decade. 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
2017, 86 percent of Ryan White patients were virally suppressed--a 24
percent increase in the program-wide viral suppression rate since 2010.
Washington University is in alignment with this national average--in
2018, 86 percent of Washington University patients were virally
suppressed. Also, 90 percent of HIV patients remain in care at
Washington University--a critical fact since HIV disease is infectious,
so identifying, engaging, and retaining persons living with HIV in
effective care and treatment is an essential public health outcome.
Ryan White Clinics Are on the Frontlines of the Opioid Epidemic
Providing SUD Treatment
Ryan White clinics serve a significant number of individuals living
with both substance use disorder (SUD) and HIV. Ryan White clinics are
able to deliver a range of medical and support services needed to
prevent and treat substance use disorder as well as related infectious
diseases, including HIV, HCV, and sexually-transmitted infections. The
significant experience and expertise of Ryan White medical providers
should be fully leveraged to effectively respond to the opioid and
other drug epidemic and expand access to SUD services more rapidly.
Providing non-Ryan White funding for SUD treatment and related
services to Ryan White clinics would increase access to SUD treatment,
overdose prevention, harm reduction, and comprehensive support services
for both individuals living with HIV as well as those without HIV. Such
funding would increase access to SUD treatment and related services
more rapidly nationwide by using the established and effective Ryan
White Program's clinic infrastructure. Leveraging this network of
comprehensive care nationwide to provide medication assisted treatment,
other SUD treatment, and related services more rapidly would help to
improve the response to opioid and other drug epidemic and help reduce
the increasing rate of opioid overdose deaths. It also would help
prevent the spread of HIV and other infectious diseases while
delivering SUD treatment, overdose prevention, and harm reduction
services.
Ryan White Clinics Are Saving Lives and Reducing Costs
Early and reliable access to HIV care and treatment helps patients
with HIV live healthy and productive lives and is more cost effective.
A study from the Part C clinic at the University of Alabama at
Birmingham found that patients treated at later stages of HIV disease
required 2.6 times more healthcare dollars than those receiving earlier
treatment meeting Federal HIV treatment guidelines.
Increased Funding for Prevention at CDC and Research at NIH Also 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 HCV; sexually transmitted
infections; and skin, soft tissue, and endovascular infections depends
heavily on CDC funding to enhance surveillance and prevention
activities, and on NIH to continue to improve the tools that we have to
prevent and treat HIV and SUD and to learn how to effectively implement
them. We support the Administration's request for $140 million for CDC
to provide surveillance, response, and other HIV prevention services as
part of the EtE initiative, as well as the Administration's request for
$58 million for CDC to address the infectious diseases consequences of
the opioid epidemic. Finally, we support continued robust funding for
NIH. This funding supports discoveries that will help to end the HIV,
HCV, and opioid epidemics.
Conclusion
Thank you for your time and consideration of these requests, and
please don't hesitate to contact me or Jenny Collier, Convener of the
Ryan White Medical Providers Coalition, at
[email protected] if you have any questions or need
additional information.
[This statement was submitted by Ernie-Paul Barrette, MD, Medical
Director, HIV Clinic for the Washington University School of Medicine,
and Member of the Ryan White Medical Providers Coalition of the HIV
Medicine Association.]
______
Prepared Statement of the Safer Foundation
My name is Victor Dickson and I submit testimony on behalf of the
Safer Foundation. For 47 years, Safer has provided a comprehensive
continuum of workforce development and reentry services for individuals
with arrest and conviction records seeking employment. There is dignity
in work, and Safer Foundation believes that individuals who have made
mistakes in the past should have the opportunity to be self-sufficient
and contribute to their families and communities through gainful,
living wage employment. Clients come to Safer because they want and
need to work. Safer Foundation helps clients discover career paths that
provide personal fulfillment while allowing them to earn a living. A
critical Federal program that supports these efforts is the
Reintegration of Ex-Offenders (RExO) program within the Employment &
Training Administration of the U.S. Department of Labor. I thank the
Subcommittee for providing RExO with $93 million in fiscal year 2019.
Given the persistent skills gap and significant need to help employers
identify qualified workers nationwide, I request $100 million for the
RExO program in fiscal year 2020.
employment reduces recidivism and improve reentry outcomes
Research shows that sustained, living wage employment and life
skills are critical components to long-term reentry success. One study
found that individuals who were employed and earning higher wages after
release were less likely to return to prison within the first year.\1\
Unfortunately, finding this type of employment can be prohibitively
difficult for Americans who have any history of justice system
involvement. The National Employment Law Project estimates that 1 in 3
American adults has a criminal record that interferes with their
ability to find a job.\2\ The RExO program helps individuals overcome
employment barriers by preparing participants for jobs in local high-
demand industries through career pathways and industry-recognized
credentials.
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\1\ Visher, C., Debus, S., & Yahner, J. Employment After Prison: A
Longitudinal Study of Releasees in Three States. Washington, DC: Urban
Institute (2008).
\2\ ``Research Supports Fair-Chance Policies'' (March 2016),
National Employment Law Project, footnote 1 on p. 7. Available at
http://www.nelp.org/publication/researchsupports-fair-chance-policies.
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Increasing RExO funding would expand access to comprehensive
workforce development and reentry services that assist individuals with
criminal records in navigating obstacles to employment while improving
employment and reentry outcomes. Authorized by section 169 of Workforce
Innovation and Opportunity Act (WIOA), the RExO program provides
workforce preparation services for both adults and young people. RExO
includes a $25 million set-aside to provide services to prepare
formerly incarcerated youth for employment, including those who have
not completed school or other educational programs. Research has found
that incarceration reduces the average formerly incarcerated
individual's earning potential by more than 27 percent over a
lifetime,\3\ making workforce development services for young people
essential for their long-term employment and reentry success. In light
of the significant costs of the criminal justice system at the state,
local, and Federal levels, the RExO program is crucial to incubating
community-based models of successful reentry through employment.
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\3\ Holwell, P., & Gardner, D. (2014). Workforce centers:
Successful labor market reentry for justice involved ex-offenders.
Centennial, CO: Arapahoe/Douglas Works, p. 2: http://www.adworks.org/
pdf/Supporting_Successful_LM_Reentry_for_Justice_Involved.pdf.
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safer's rexo services increase employment by working with employers and
employees
Safer Foundation offers a full spectrum of workforce development
and reentry services that train individuals, address their reentry
obstacles and needs, and help them obtain sustained employment. This
holistic approach has rendered outstanding results for participants and
employers. In 2006, decades of experience and success led Safer to
become one of the original RExO grantees. This year, Safer expects to
provide employment services to nearly 6,000 individuals with arrest and
conviction records, with RExO funding providing critical support for
these services.
However, in addition to working with reentering individuals and
their communities, Safer also works closely with employers to identify
what types of trained employees they need. The National Federation of
Independent Business reports that as of 2017, 45 percent of small
businesses were unable to find qualified applicants to fill job
openings, including construction workers, truck drivers, industrial
technicians, heavy equipment operators, computer network support
specialists, and web developers. Safer can be responsive to employer
needs by tailoring its programs to develop skilled workers for specific
employment sectors. For example, Safer's Training to Work (T2W)
program, funded by a RExO grant, has improved long-term employment
prospects for clients at Safer's Adult Transition Centers (ATC).
Program participants receive case management, education, and training
that lead to industry-recognized credentials for in-demand employment
such as forklift operation, foodservice and sanitation, welding,
computer numerically control (CNC), CDL training, and Microsoft
technologies. Given the program's strong employer and credentialing
components, RExO is uniquely positioned to assist local organizations
in developing and providing services that meet the needs of both the
local business community and reentering individuals.
safer's rexo grant produced outstanding employment outcomes and reduced
recidivism
Safer's RExO grant for the Training to Work (T2W) program
significantly outperformed employment targets and dramatically reduced
recidivism. For the first cohort of RExO T2W participants, 69 percent
of participants obtained employment--15 percent higher than the grant's
employment target. Given the success of this first cohort of
participants, T2W was extended to a second cohort who did even better
with an employment rate of 78 percent--30 percent higher than the
grant's target. Safer's RExO T2W grant also reduced recidivism rates
beyond original targets. A 2014 report published by the Bureau of
Justice Statistics, which studied recidivism across 30 States for 5
years, determined that the recidivism rate 1 year after release from
prison was 43.4 percent.\4\ T2W's first participant cohort had an 11
percent recidivism rate, and its second participant cohort had a 9
percent recidivism rate--respectively 75 percent and 80 percent lower
than the national recidivism rate.
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\4\ Durose, Matthew R., Alexia D. Cooper, and Howard N. Snyder,
Recidivism of Prisoners Released in 30 States in 2005: Patterns from
2005 to 2010 (pdf, 31 pages), Bureau of Justice Statistics Special
Report, April 2014, NCJ 244205.
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Program evaluation has shown that such successful outcomes are
related to the comprehensive service model that grantees such as Safer
provide. Effective, comprehensive services can include interventions
such as relationship building between staff and participants,
employment verification, trauma informed training, life skills
training, employment preparation, mentoring, intensive case management,
strong training provider relationships and support, family involvement,
and post-release follow-up and support. These comprehensive services
are cost-effective--a 2016 Illinois study found that for every $1
invested in community-based employment and training programs, tax
payers saw a net benefit of $20.26, and found that employment and
training programs had the highest cost-benefit ratio for reducing
recidivism.\5\
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\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.
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u.s. economic success requires increased employment of individuals with
criminal records
As the U.S. economy continues to rebound from the last recession,
the labor market continues to tighten and the skills gap is growing.
While currently the U.S. is experiencing a period of economic
expansion, experts warn that this expansion will end prematurely if the
U.S. does not relieve structural constraints on labor force
participation, including over-expansive bans on employment of
individuals with criminal records. Employment barriers faced by
individuals with criminal records combined with the opioid epidemic
have deflated the U.S. labor force participation rates, which are as
low today as they were over 30 years ago.\6\ As labor markets continue
to tighten, employers are increasingly ready to give people with
criminal records a fair shot, and increasingly need to do so to find
and employ skilled workers. Safer has partnered with hundreds of
employers to meet their workforce needs. Increased RExO funding in
fiscal year 2020, including the funding of earn and learn
apprenticeship opportunities for in demand skills development, would
allow these efforts to expand, and could help match more employers with
qualified employees who are trained, talented, and motivated to work.
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\6\ Bureau of Labor Statistics, U.S. Department of Labor. Available
at https://data.bls.gov/timeseries/LNS11300000.
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conclusion
By making effective workforce development and reentry services a
priority, we fulfill labor market demands, contribute to a growing
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 $100 million to the RExO program in fiscal year
2020. Thank you so much for your time and consideration of this
important program.
[This statement was submitted by Victor Dickson, President and CEO,
Safer Foundation.]
______
Prepared Statement of Save the Children Action Network
Chairwoman DeLauro, Ranking Member Cole, and honorable Members of
the Subcommittee, thank you for the opportunity to provide testimony
about the critical investments that must be made in early childhood
education. My name is Mark Shriver and I am the CEO of Save the
Children Action Network (SCAN) and Senior Vice President of U.S.
Programs and Advocacy for Save the Children. SCAN is a national, non-
profit organization that aims to mobilize all Americans to support
critical investments in early childhood education (ECE), for children
birth to age five. We advocate for robust appropriations for the
Department of Health and Human Services programs of Head Start/Early
Head Start, Child Care and Development Block Grants, and Preschool
Development Grants, as well as the Department of Education programs,
21st Century Community Learning Centers and Promise Neighborhoods.
background
The changing demands of our Nation's economy, the stresses of our
labor market and the challenge created by an increasing number of
children being raised in single-parent families have all left low-
income parents struggling with the burdens of work and parenting. By
supporting critical early learning programs, not only are we investing
in the lives of children, but their parents also have the ability to
enter into the workforce and become productive, taxpaying members of
society. This increases the economic stability of families and improves
the foundation for the children's future wellbeing. Ensuring access to
ECE is the most effective way to break the cycle of poverty. These
investments lay the foundation for children's success later in school,
career and life-and they also offer tangible returns on investment to
the country as a whole, such as increased tax revenue later in life,
lower justice system costs, and reduced reliance on government
assistance.
When America invests in kids, it is investing in its own economic
future as well. Research shows that investments in ECE offer potential
for long-term economic impact and growth. Nobel Prize-winning economist
James Heckman released a report in December 2016 indicating that the
annual rate of return on investments in high-quality early childhood
development for children from low-income backgrounds can be up to 13
percent, per child per year, due to improved outcomes in education,
health, sociability, economic productivity and reduced crime.\1\
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\1\ Jorge Luis Garcia, James J. Heckman, Duncan Ermini Leaf, and
Maria Jose Prados, ``The Life-Cycle Benefits of an Influential Early
Childhood Program,'' The Heckman Equation, (2016), https://
heckmanequation.org/resource/lifecycle-benefits-influential-early-
childhood-program/.
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We recognize that difficult budget decisions that need to be made.
However, balancing the budget on the backs of children, who are our
greatest investment and hope for the future, is not the right path
forward and it is not supported by an overwhelming majority of
Americans. The research is clear that doing so is against our economic
interest.
save the children's work on early childhood education
The good news is that we know what works. Save the Children has
years of experience and has long been a part of the movement to provide
high-quality early childhood education in the United States. To advance
early learning, Save the Children runs education programs for children
at home and in the classroom. Our child experts work to ensure that our
Nation's most under resourced children have the best chance for
success. Every day, we help children get ready to learn, do well in
school, and live healthy, active lives.
appropriations priorities
Child Care and Development Block Grant (CCDBG)
The most effective, efficient way to invest in child care would be
through a substantial increase in funding for the Child Care and
Development Block Grant (CCDBG), the major Federal child care program.
The program provides vouchers directly to working families to help them
afford the licensed child care provider of their choice.
The increase in child care funding in fiscal year 2018 has had
tremendous benefits for children and families across the country.
States have been able to make significant additional progress in
implementing the reforms included in the 2014 CCDBG reauthorization law
designed to ensure the health and safety of child care, improve the
quality of care, and make it easier for families to obtain and retain
child care assistance. For example, States have used the new CCDBG
funds for purposes such as helping providers cover the costs of
criminal background checks, ensuring families can receive child care
assistance for a continuous 12 months to allow them to have more stable
child care, supporting professional development opportunities for child
care teachers, and hiring additional inspectors to monitor child care
programs.
Despite this progress, further investments are needed to fully
compensate for years of stagnant funding. Total funding for child care
(including CCDBG funds and Temporary Assistance for Needy Families
funds used for child care) in fiscal year 2018 remained nearly $1
billion short of the total funding level in fiscal year 2001 after
adjusting for inflation. As a result, many families are still unable to
access help paying for care due to State income limits that remain low
or waiting lists that remain long, and many child care providers-
particularly those in low-income neighborhoods-still struggle to stay
in business due to payment rates that remain low. For these reasons, we
support a $5 billion increase to CCDBG.
Head Start and Early Head Start
Head Start and Early Head Start are key to providing and expanding
comprehensive early care and education to our poorest children. Head
Start programs promote the school readiness of young children from low-
income families by supporting their comprehensive development. Head
Start also requires strong parent engagement. This dual generation
support for families increases the positive benefits of the program.
Adequate investment in Head Start is critical to ensure that more
eligible children develop the skills that will foster their success
once they transition to elementary school and beyond.
Head Start has served over 33 million children and families in
communities across the country since 1965, and continues to serve
nearly a million children every year. However, at the current level of
funding, Head Start serves less than half of eligible preschoolers.
Moreover, some of the Head Start programs can only offer partial day
and/or partial year programming. These shortfalls in service delivery
hamper the development and interrupt stable care of children and add an
extra burden on parents/caregivers to identify alternative care
options, which may be costly or lower quality. Proposals for more Head
Start programs to provide full-day, full-year services would ensure our
lowest-income children receive a strong early learning experience. This
change, however, will require additional investments so that the
increased hours and days of programming do not result in cuts in the
number of children participating in Head Start, the number of staff
employed by programs, or impact the quality of programming provided.
Additionally, while the very early years of a child's life are
critical to their development, Early Head Start serves less than 5
percent of eligible infants and toddlers. Increased funding is required
to expand access to this life-changing program.
We also support the Early Head Start-Child Care Partnerships, which
have shown promising results in States and communities by assisting in
the expansion of high-quality early learning opportunities for infants
and toddlers. These partnerships aim to better align early childhood
policies, regulations, resources, and quality improvement support at
national, State, and local levels. They also aim to obtain greater
community buy and support of about higher-quality child care
requirements. These partnerships build the capacity of the community
and providers, while also incorporating Early Head Start's high
standards.
Building on increases in fiscal year 2019, we encourage you to
direct funding increases for Head Start and Early Head Start into three
areas. First, we ask that you provide $250 million to support the Head
Start and Early Head Start workforce through a cost of living
adjustment in line with inflation. Second, we recommend an increase of
$745 million for quality improvement funding specifically focused on
addressing the impacts of trauma and Adverse Childhood Experiences
(ACES) on children in Head Start and Early Head Start. Quality
improvement funding allows for each grantee to tailor supports for the
unique needs of children and families in their community. Finally, we
ask that you continue building on recent increases in Early Head Start
with $500 million in additional funding to expand critical high-quality
services for infants and toddlers.
Preschool Development Grants (PDG)
The Preschool Development Grant program provides States funding to
establish or expand their own pre-kindergarten programs to serve more
children and increase the quality of these programs. With continued
funding, States will be able to expand their preschool programs and
provide this important opportunity to more children. In its first 4
years, this program reached over 170,000 children who otherwise would
not have had access to preschool. States' commitment to increasing
access to high-quality preschool opportunities is extremely high, as is
their eagerness to partner with the Federal Government in this
endeavor.
Expanded investments in Preschool Development Grants will enable
more children to take advantage of early learning opportunities that
encourage their learning and growth and will support efforts to further
strengthen the quality of these programs. Research has demonstrated
that high-quality early education has long-term benefits for children,
especially low-income children, which far exceed the costs. Children
who participate in high-quality early education programs have a reduced
need for special education, improved health outcomes, higher rates of
high school and college graduation, decreased dependence on welfare
programs, and increased workforce productivity. We therefore request
$400 million in funding for this program.
21st Century Community Learning Centers (CCLC)
The CCLC program supports the creation of community learning
centers that provide academic enrichment opportunities during non-
school hours for children, particularly students who attend high-
poverty and low-performing schools. The program helps students meet
State and local student standards in core academic subjects, such as
reading and math, and offers students a broad array of enrichment
activities that can complement their regular academic programs.
Additionally, the program offers literacy and other educational
services to the families of participating children. Under ESSA, funds
can also be used to pay for additional time, support and enrichment
activities during the school day.
Every day 11.3 million children are alone after school and are
unsupervised for an average of seven hours per week. Parents of more
than 19.4 million youth say their children would participate in an
afterschool program if one were available in their community. Programs
like CCLC help working families, keep young people safe during the
hours after school when juvenile crime peaks, and improve academic
achievement. These programs also provide children with physical
activity and engage them in their learning. Without funding for
afterschool and summer learning programs, students will lose out on
essential learning opportunities that help them prepare for school,
college and careers. We urge Congress to support this important program
with funding of $1.32 billion so that services may continue and the
academic and developmental outcomes of children can be improved.
Promise Neighborhoods
The Promise Neighborhoods program is authorized under the
Elementary and Secondary Education Act of 1965, as amended by ESSA.\2\
The program supports the implementation of innovative strategies that
improve outcomes for children in the Nation's most distressed
communities. To do so, communities must build a continuum of supports
for children, from cradle to career. This program increases the
capacity of community leaders and organizations to plan, implement and
track progress toward specified outcomes. These outcomes include
students entering kindergarten ready to succeed in school, graduating
from high school and feeling safe at school and in the community. The
program also tracks 15 indicators to measure success, including
attendance, graduation and student mobility rates, and participation in
daily physical activity. This holistic approach to improving the
educational achievement of low-income students ensures sustainable,
community-driven changes and interventions.\3\
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\2\ https://innovation.ed.gov/what-we-do/parental-options/promise-
neighborhoods-pn/.
\3\ https://www.brookings.edu/research/the-harlem-childrens-zone-
promise-neighborhoods-and-the-broader-bolder-approach-to-education/.
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Since its creation in 2010, this innovative program has continued
to fund communities with demonstrated success as well as award funding
to new communities who create thoughtful plans for change. This program
is a strategic investment in high-needs communities, so we ask Congress
to make the smart investment of $78.25 million for Promise
Neighborhoods.
conclusion
On behalf of Save the Children Action Network, and our advocates
across the country, I want to thank the Subcommittee for its continued
leadership on early childhood education programs and its demonstrated
bipartisan support for these priority programs in the fiscal year 2019
appropriations process. I ask that you now continue to make a robust
investment in early childhood education in fiscal year 2020. We
appreciate the Subcommittee's support for programs that are essential
to giving children opportunity for success. We ask for your continued
partnership in investing in children, increasing access to opportunity,
and ensuring a more prosperous America for generations to come.
[This statement was submitted by Mark Shriver, CEO, Save the
Children Action Network.]
______
Prepared Statement of the Scleroderma Foundation
the foundation's fiscal year 2020 l-hhs appropriations recommendations
_______________________________________________________________________
--$7.8 billion in program level funding for the Centers for Disease
Control and Prevention (CDC), which includes budget authority,
the Prevention and Public Health Fund, Public Health and Social
Services Emergency Fund, and PHS Evaluation transfers.
--A proportional fiscal year 2019 funding increase for CDC's
National Center for Chronic Disease Prevention and Health
Promotion (NCCDPHP).
--At least $41.6 billion in program funding for the National
Institutes of Health (NIH).
--Proportional funding increases for NIH's National Heart, Lung,
and Blood Institute (NHLBI); National Institute of
Arthritis and Musculoskeletal and Skin Diseases (NIAMS);
National Center for Advancing Translational Sciences
(NCATS).
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray and distinguished members of
the Subcommittee, thank you for your time and your consideration of the
scleroderma community's priorities while working to craft the fiscal
year 2020 L-HHS Appropriations Bill.
about scleroderma
Scleroderma, or systemic sclerosis, is a chronic connective tissue
disease generally classified as one of the autoimmune rheumatic
diseases. The word ``scleroderma'' comes from two Greek words:
``sclero'' meaning hard, and ``derma'' meaning skin. Hardening of the
skin is one of the most visible manifestations of the disease. The
disease is also known as ``systemic sclerosis,'' a subset of the
disease in which internal organ systems (such as kidneys, lungs, heart,
and gastrointestinal track) and skin, or internal organ systems only,
are affected. It is estimated that about 300,000 Americans have
scleroderma with one-third of those having the systemic form of the
disease. Scleroderma varies from patient to patient and often presents
with symptoms similar to other autoimmune diseases, making diagnosis
and treatment extremely complicated. There may be many misdiagnosed or
undiagnosed cases. Currently, there is no cure for scleroderma.
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 affected individuals, 2) promote
education and public awareness, and 3) advance critical research and
improve scientific understanding to improve treatment options and find
cures. The Foundation has a research program that funds clinical
research 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.
national institutes of health
NIH continues to work with the Foundation to lead the effort to
enhance our scientific understanding of the mechanisms of scleroderma
with the shared goal of improving diagnosis and treatment, and
ultimately finding a cure. Since scleroderma is a systemic fibrotic
disease it is inexorably linked to other manifestations of fibrosis
such as cirrhosis, pulmonary fibrosis, and the fibrotic damage
resulting from heart attack. Scleroderma is a prototypical
manifestation of fibrosis as it impacts multiple organ systems. In this
way, it is important to promote cross-cutting research across such
Institutes as NIAMS and NHLBI.
Please provide NIH with a significant funding increase to the
scleroderma research portfolio can continue to expand and facilitate
key breakthroughs.
--NIH continues to support the Trans-NIH Working Group on Fibrosis
which is working to promote cross-cutting research across
Institutes.
--NHLBI, which is leading Scleroderma Lung Study II, is comparing the
effectiveness of two drugs in treating pulmonary fibrosis in
scleroderma.
--NIAMS is leading efforts to discover whether three gene expression
signatures in skin can serve as accurate biomarkers predicting
scleroderma, and investigations into progression and response
to treatment to clarify the complex interactions of T cells and
interleukin-31 (IL-31) in producing inflammation and fibrosis
or scarring in scleroderma.
Patient Perspective
My constantly aching hands begged for mercy of just one day without
pain. My joints started to feel like they were being torn away from my
body. Anytime I touched something cold, my hands would tingle and burn.
Painful sores started appearing on my knuckles. You stole my skin color
and with that went my confidence. It was like I was turning into a
mummy as my skin tightened with collagen, day by day. I was beginning
to need help performing small tasks. Opening a water bottle or turning
a key in the door started to become difficult. Standing for long
periods of time made my hips radiate with pain. In 2012 I had to stop
working, at 24 years old. The definition of normal as I knew it was
being torn down and built into something completely new. And so was my
soul.
I now need help with everything! Getting dressed, washing my hair,
cleaning, doing laundry; pretty much anything I have to use my hands
for. You stole my independence. I had to learn to swallow my pride and
ask for help. It's a tough thing to do, especially when you're at an
age that's supposed to be your prime. Friends and family around me have
blossomed into caregivers and helping me has become second nature to
them. It's a beautiful thing when those surrounding you automatically
adapt to your disability. Support is the lifeboat that keeps me
afloat.''
--Excerpt from ``My Letter to Scleroderma''
Jessica Messingale
Coconut Creek, Florida
[This statement was submitted by Mr. Robert J. Riggs, Chief
Executive Officer, Scleroderma Foundation.]
______
Prepared Statement of Shannon Toolis and Robert Kloecker
overview
We are the Illinois parents of a 6 year old son who was diagnosed
in 2018 with Celiac Disease, a serious autoimmune disease that afflicts
about 3 million Americans. We echo the recent testimony of Marilyn
Geller, CEO of the Celiac Disease Foundation, to the U.S. House of
Representatives Committee on Appropriations, Subcommittee on Labor,
Health and Human Services, Education, and Related Agencies, when Geller
stated, ``If I leave you with one message today, it is that Celiac
Disease is, in fact, a serious autoimmune disease that is not being
taken seriously enough by our government.'' \1\
---------------------------------------------------------------------------
\1\ Testimony of Marilyn G. Geller, CEO, Celiac Disease Foundation
(Los Angeles, CA), to the U.S. House of Representatives Committee on
Appropriations, Subcommittee on Labor, Health and Human Services,
Education, and Related Agencies, April 9, 2019, https://celiac.org/
april-2019-congressional-testimony-by-ceo-marilyn-g-geller/?
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Today, many people have conflated the popular Gluten Free diet
craze with the medically required Gluten Free diet for people with
Celiac Disease. In 1952, it was first discovered that Gluten was the
trigger of Celiac Disease.\2\ To cure Celiac Disease, we need to
fundamentally shift how our government leaders are educated on this
disease. Why? Because the current research paradigm for Celiac Disease,
one that has existed for many decades, has not delivered a cure or even
a way to treat accidental ingestion of Gluten. There is no medicine or
surgery available to treat Celiac Disease. To date, Celiac Disease
research has produced only a single approved treatment--strict
adherence to a lifelong Gluten Free diet with no exceptions! However,
as Celiac Disease researchers have found, ``[t]here is no such thing as
a gluten-free diet because of the constant risk of cross-contact with
gluten, and gluten is in 80 percent of our foodstuffs.'' \3\
Additionally, for up to 30 percent of patients, diet alone is
inadequate for remission in that it alleviates some symptoms, but does
not heal and resolve intestinal damage caused by Celiac Disease.\4\
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\2\ ``From Mussels to Bananas to Gluten: Celebrating Samuel Gee &
Advances in celiac Disease Research,'' Beyond Celiac, August 27, 2018,
https://www.beyondceliac.org/celiac-disease-news/celebrating-celiac-
awareness-day-2018/
\3\ Testimony of Marilyn G. Geller, April 9, 2019.
\4\ Celiac Disease Foundation, https://celiac.org/about-celiac-
disease/poorly-responsive-celiac-disease/.
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Anecdotally, we can attest to the treatment burden, including the
need to research every item that our son eats, the requirement to stay
ahead of any food being served at school or activities and to provide
gluten-free alternatives, and the constant concern over cross
contamination whenever eating outside of home. Research has shown that
the treatment burden of Celiac Disease is comparable to end-stage renal
disease, and the partner (or parent) burden is comparable to caring for
a patient with cancer.\5\
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\5\ ``Patient Perception of Treatment Burden is High in Celiac
Disease Compared to Other Common Conditions,'' PMC, National Library of
Medicine, National Institutes of Health, July 1, 2014, https://
www.ncbi.nlm.nih.gov/pmc/articles/PMC4159418/, and ``What is Celiac
Disease?'', Celiac Disease Foundation, https://celiac.org/about-celiac-
disease/what-is-celiac-disease/.
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While the NIH purportedly makes decisions on what diseases deserve
Federal research funding based on disease burden and prevalence, NIH
has seriously under-funded Celiac Disease over the last decade, even as
the number of Americans diagnosed with Celiac Disease has kept
increasing. Moreover, as detailed herein, NIH funding for Celiac
Disease has significantly trailed comparable diseases that have the
same or less prevalence, the same or less disease burden measurements,
as well as more than one available treatment option. We need the U.S.
government, including the NIH and CDC, to start to invest meaningful
resources to find a cure to this debilitating disease that directly
impacts the lives of 1 percent of Americans, in addition to their
families and/or partners, on a daily basis. Celiac Disease is so
serious that it is a ``disqualifying condition'' from service in the
U.S. Military.\6\
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\6\ U.S. Department of Defense, ``DoD Instruction 6130.03, Medical
Standards for Appointment, Enlistment, or Induction into the Military
Services,'' Section 5.12.c.(3), May 6, 2018, https://www.esd.whs.mil/
DD/.
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suggested report language to the nih
We are respectfully asking that the Senate Appropriations Committee
include the following Report Language to the National Institutes of
Health:
``The Committee recognizes the serious issue of Celiac Disease
which affects more than 3 million Americans, and that the
number afflicted is growing. To that end, the Committee urges
NIH to devote sufficient, focused research to the study of
Celiac Disease. To date, NIH has examined symptoms of Celiac
Disease and has not focused upon the autoimmune causation
underpinning the affliction. Today, the only known treatment
for this disease is a Gluten Free diet; but, recent private
sector research has revealed that such a treatment is
insufficient for many who suffer from Celiac Disease.
Therefore, the Committee directs the Office of the Director to
dedicate sufficient resources and robust investment toward
multi-institute research to better coordinate existing research
and focus new research efforts toward understanding causation
and ultimately, finding a cure. The Office of the Director is
directed to submit its plan for coordination and execution of
this research to the Senate Appropriations Committee, including
the funding and FTE associated with implementation of this
plan, no later than 60 days after the date of enactment of this
Act.''
What is Celiac Disease?
Answer. An Invisible Illness with a Major Impact on
People's Health
According to the University of Chicago Celiac Disease Center,
``Celiac disease is an inherited autoimmune disorder that affects the
digestive process of the small intestine. When a person who has celiac
disease consumes gluten, a protein found in wheat, rye and barley
[gluten helps food items maintain their shape, acting as a glue that
holds food together \7\], the individual's immune system responds by
attacking the small intestine and inhibiting the absorption of
important nutrients into the body.'' \8\ ``Specifically, the tiny
fingerlike protrusions called villi on the lining of the small
intestine are lost [damaged].'' \9\ 30-40 percent of Americans carry
the genes for Celiac Disease, but only about 1 percent have Celiac
Disease. No one knows what causes Celiac Disease to activate in some
people, but not others. This is one of the key research areas that
needs funding. Additionally, Celiac research has the potential to
enhance understanding and improve therapies for other auto-immune
conditions and unlock the mysteries of the microbiome which may enable
treatment for a wide spectrum of diseases.
---------------------------------------------------------------------------
\7\ ``What is Gluten?'', Celiac Disease Foundation, https://
celiac.org/gluten-free-living/what-is-guten/.
\8\ University of Chicago Celiac Disease Center, Facts and Figures,
https://www.cureceliacdisease.org/wp-content/uploads/
341_CDCFactSheets8_FactsFigures.pdf.
\9\ University of Chicago Celiac Disease Center, https://
www.cureceliacdisease.org/overview/.
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Our Son's Potential Reactions to Ingestion of Gluten
For all Celiac Disease sufferers such as our son, the Gluten
protein (even in trace amounts such a crumb) can pose a severe health
risk for:
--Short-term sickness including abdominal pain, gas, diarrhea and/or
vomiting; and
--Long-term damage to the small intestine (which affects his ability
to absorb nutrients required for proper growth and
development), and an increased risk of other medical conditions
including, but not limited to, auto-immune thyroiditis, liver
disease, inflammatory bowel disease, osteopenia, osteoporosis,
infertility, neurological conditions, cancer (lymphoma),\10\
and immunological scarring.\11\
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\10\ Beyond Celiac, Fast Facts about Celiac Disease Infographic,
www.beyondceliac.org , and https://www.beyondceliac.org/60forceliac/
Fast-Facts-about-Celiac-Disease-Infographic/1448/.
\11\ Celiac Disease Foundation, ``Chronic Inflammation Permanently
Alters Immune Cells in Celiac Patients,'' https://celiac.org/about-the-
foundation/featured-news/2019/02/chronic-inflammation-permanently-
alters-immune-cells-in-celiac-patients/.
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Food Allergies Significantly Impact Psychosocial Well-Being \12\ of
Children with Food Allergies
---------------------------------------------------------------------------
\12\ Beyond Celiac, Psychosocial Impacts of Celiac Disease
Infographic, https://www.beyondceliac.org/60forceliac/Psychosocial-
Impacts-of-Celiac-Disease-Infographic/1450/.
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For all intents and purposes, Gluten is poison to our son's body,
and it is analogous to the serious danger that peanuts pose to those
who are afflicted with nut allergies. Eating Gluten does not initiate
an anaphylactic cascade reaction in Celiac Disease patients. However,
the ingestion of Gluten, even accidental ingestion of a trace amount of
Gluten, can sicken and endanger (set back) the healing of a patient's
small intestine enabled through his/her strict adherence to a Gluten
Free diet, and/or trigger new damage to the small intestine that could
take additional years to heal. There is no medicine available (i.e.,
epinephrine pen for nut allergies) to take to treat any accidental
ingestion of Gluten.
According to the CDC, ``Many studies have shown that food allergies
have a significant effect on the psychosocial well-being of children
with food allergies and their families.'' \13\ According to the
University of Chicago, ``Living healthily with Celiac Disease requires
skill in negotiating the everyday environment--especially for children
and teens, where most positive social encounters, from school lunches
to prom,ares organized around food.'' \14\
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\13\ U.S. Department of Health and Human Services, Centers for
Disease Control and Prevention, ``Voluntary Guidelines for Managing
Food Allergies in schools and Early Care and Education Programs''
(footnotes 39-45), https://www.cdc.gov/healthyschools/foodallergies/
pdf/13_243135_A_Food_Allergy_Web_508.pdf.
\14\ University of Chicago Celiac Disease Center, 2018 Year End
Report, https://www.cureceliacdisease.org/wp-content/uploads/
CdC_YearEnd_Report_18_WEB.pdf.
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Disparities Among Gastrointestinal Disorders in Research Funding From
NIH
To understand and correct the historically inadequate NIH funding
of Celiac Disease, it is instructive to read the peer reviewed academic
analysis published in 2017 by the American Gastroenterological
Association entitled, ``Disparities Among Gastrointestinal Disorders in
Research Funding From the National Institutes of Health,'' that was
written by some of the world's leading GI researchers, which found
that, out of various Gastrointestinal Disorders:
``Celiac disease consistently received the lowest amount of NIH
funding over the 5-year period, at approximately $3 million per
year.''
``Celiac disease consistently received the lowest amount of NIH
grants, at approximately eight grants per year.''
``Barrett's esophagus, with a prevalence of approximately 1
percent, received $64.1 million over the 5-year period. Celiac
disease, with prevalence very similar to that of Barrett's
Esophagus at approximately 1 percent, received significantly
less funding over the 5-year period at $15.4 million--the
lowest amount of all the diseases studied.''
``Although there is no global metric for disease importance, it
is difficult to justify on medical and scientific bases a
reason for such large and persistent funding differences.
Although Crohn's disease has many available and emerging
treatment options, celiac disease, for example, is more
prevalent and has no current treatment available to patients
beyond the burdensome gluten-free diet; however, celiac disease
received only a small fraction of the funding that Crohn's
disease received from the NIH over the 5-year period.''
``In conclusion, NIH funding of GI diseases is not proportional
to disease prevalence or mortality. These data further suggest
that a few diseases, including IBS and celiac disease, are
underfunded in comparison with other diseases, especially when
the prevalence, burden, and available treatment options are
considered. Plausible reasons for this disparity include
varying numbers of established research programs to recruit
young investigators, fewer grants submitted because of a lack
of investigators in the field owing to poor funding, and narrow
expertise of peer reviewers on NIH review committees. In
contrast with disorders with low funding levels, ample public
and private funding of Crohn's disease allows for excellent
research, which in turn, favors more awards of research
funding. This may seem circuitous; however, funding of Crohn's
disease research provides an example of the way in which
success breeds success.'' \15\ (emphasis added)
---------------------------------------------------------------------------
\15\ ``Disparities Among Gastrointestinal Disorders in Research
Funding From the National Institutes of Health,'' The American
Gastroenterological Association, By: Emma Clerx, Harvard University;
Sonia Kupfer, Celiac Disease Center at University of Chicago; and
Daniel Leffler, North American Society for the Study of Celiac Disease,
Beth Israel Deaconess Medical Center; September 4, 2017, https://
www.gastrojournal.org/article/S0016-5085(17)36084-5/pdf.
---------------------------------------------------------------------------
For fiscal year 2020, we are respectfully requesting that NIH model
its funding of Celiac Disease research on its funding model and scale
for research on Crohn's Disease. In spite of a lower number of disease
specific mortalities as well as many available and emerging treatment
options, Crohn's disease received about 40 NIH grants per year
averaging about $16 million annually from 2011-2015, in comparison to
Celiac Disease which received about 8 NIH grants per year averaging
about $3.0 million annually from 2011-2015. In 2018, the NIH RePORT
suggests that Celiac Disease research received a modest increase to 13
grants totaling approximately $4.7 million. In contrast, in 2018, NIH
research funding for Crohn's disease encompassed 210 grants totaling
$69 million.
Notwithstanding the Herculean efforts by some brilliant, small and
under-resourced research teams and advocacy groups, the paucity of NIH
funding has created a vacuum and stifled innovation in the efforts to
treat and cure Celiac Disease. This can change in fiscal year 2020 with
meaningful NIH funding that validates research ready initiatives at
multi-institute translational research centers including at the
University of Chicago Celiac Disease Center, Celiac Disease Center at
Columbia University, the Harvard Medical School Celiac Research Program
and the Children's Hospital of Philadelphia Center for Celiac Disease.
______
Prepared Statement of the Sleep Research Society and Project Sleep
fiscal year 2020 appropriations recommendations
_______________________________________________________________________
--SRS joins the broader medical research community in thanking
Congress for providing a $2 billion funding increase for the
National Institute of Health (NIH) for fiscal year 2019 and in
requesting a subsequent increase of at least $2.5 billion for
fiscal year 2020 to bring total agency funding up to a minimum
of $41.6 billion annually.
--Please provide proportional funding increases for all NIH
Institutes and Centers, including in particular the
National Heart, Lung, and Blood Institute (NHLBI), which
houses the National Center on Sleep Disorders Research
(NCSDR). Sleep impacts nearly every body system and the
progress of many illnesses. As a result, nearly every NIH
Institute and Center conducts sleep research, and NCSDR
helps coordinate sleep research activities across (and not
just across NIH, but across the Federal Government,
including the Department of Defense and the Veterans
Administration).
--SRS joins the broader public health community in thanking Congress
for providing the Centers for Disease Control and Prevention
(CDC) with a modest funding increase for fiscal year 2019 and
in requesting a subsequent increase of at least $500 million in
discretionary resources for fiscal year 2020 to bring total
agency funding up to a minimum of $7.8 billion annually.
--Please also provide a dedicated, line-item appropriation of at
least $250,000 to reinvigorate crucial sleep activities at
CDC. Despite the success and importance of the National
Healthy Sleep Awareness Project, this critical program
(which had been funded for years with discretionary
resources) was halted by CDC in fiscal year 2019 due to a
stated lack of available funds.
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, thank you for considering the views of the sleep,
circadian, and sleep disorders advocacy community as you work on fiscal
year 2020 appropriations for relevant medical research and public
health programs. We would like to take this opportunity to thank you
for providing meaningful investment in fiscal year 2019 for NIH and CDC
and to request that this investment continue in fiscal year 2020
considering recent progress and emerging opportunities.
about the sleep research society
The Sleep Research Society (SRS) was established in 1961 by a group
of scientists who shared a common goal to foster scientific
investigations on all aspects of sleep, circadian rhythmicity, and
sleep disorders. Since that time, SRS has grown into a professional
society comprising over 1,300 researchers nationwide. From promising
trainees to accomplished senior level investigators, sleep and
circadian research has expanded into areas such as psychology,
neuroanatomy, pharmacology, cardiology, immunology, metabolism,
genomics, and healthy living. SRS recognizes the importance of
educating the public about the connection between sleep, circadian
rhythmicity, and health outcomes. SRS promotes training and education
in sleep and circadian research, public awareness, and evidence-based
policy, in addition to hosting forums for the exchange of scientific
knowledge pertaining to sleep and circadian rhythms.
about project sleep
Project Sleep is a 501(c)(3) non-profit organization raising
awareness about sleep health and sleep disorders by working with
affected individuals and families across the country. Believing in the
value of sleep, Project Sleep aims to improve public health by
educating individuals and policymakers about the importance of sleep
health and sleep disorders. Project Sleep will educate and empower
individuals using events, campaigns, and programs to bring people
together and talk about sleep as a pillar of health.
cdc sleep disorders activities
For nearly a decade, CDC has supported the National Healthy Sleep
Awareness Project (NHSAP) with discretionary resources at about
$250,000 annually. Despite the severity and prevalence of sleep-related
health issues, NHSAP represented the only public health activity at CDC
devoted to sleep. This project has been highly successful by leveraging
voluntary contributions from leading sleep centers and organizations to
generate numerous research advancements, awareness campaigns,
professional publications, and peer-reviewed articles.
Despite the overwhelming support for the NHSAP and the request to
continue its core functions through key committee recommendations, CDC
terminated these activities for fiscal year 2019 (effectively halting
sleep-related public health efforts). These sleep efforts should be
reinvigorated for fiscal year 2020 with a dedicated appropriation at
the previous level of $250,000 annually. Healthy sleep is a public
health challenge on par with other contemporary areas of focus, such as
smoking cessation and obesity. This timely modest investment will
ensure the continuation of recent efforts and continue to pay dividends
in terms of patient outcomes and public health benefits.
nih sleep disorders activities
Over recent years, NIH has seen a meaningful infusion of essential
funding. This investment has improved grant funding pay lines, led to
significant scientific advancements, and helped to prepare the next
generation of young investigators. Due to the high quality of the
science, the sleep research portfolio has done well as a result of this
additional funding. In fact, NIH supported research was critical to the
circadian research project that received the 2017 Nobel Prize in
Physiology and Medicine. However, while the sleep portfolio overall is
strong, one area of potential improvement is investment in individual
sleep disorders. The research portfolios for specific conditions at
NIH, including Restless Legs Syndrome, circadian rhythm disorders, and
Narcolepsy, remain relatively modest. The research done in these
portfolios has a direct and sometimes immediate impact on patient
health and wellness.
Recently, the committee reports accompanying the L-HHS
appropriations bills have featured timely recommendations that
emphasize the value and importance of sleep, sleep disorders, and
circadian research. Moving forward, please continue to recognize the
progress made by NCSDR and the need to continue to advance this
research portfolio in a way that capitalizes on emerging opportunities
for patient benefit.
community story: matthew--tennessee
Matthew Horsnell, age 37, is a life-long resident of Nashville, TN,
and the proud father of two daughters, ages 14 and 12, and a son, age
6. Matthew was diagnosed with narcolepsy with cataplexy at age 25 after
12 years of battling excessive daytime sleepiness and involuntary
muscle paralysis triggered by emotions (cataplexy). Daily and nightly
medications improve his quality of life but do not erase his symptoms.
In addition, he was diagnosed with obstructive sleep apnea at age 30,
requiring the use of a CPAP device nightly. The combination of these
conditions has a profound impact on Matthew's life and his ability to
support his family as a single father. Currently, Matthew works part-
time while also finishing up his liberal studies degree at Belmont
University. Despite the adversity he faces daily, one of Matthew's
hobbies is strength training and he considers himself ``the World's
Strongest Person living with narcolepsy with cataplexy.'' Advancements
in research are critical to improve the lives of people like Matthew
and their families.
[This statement was submitted by Andrew Krystal, MD, MS, President,
Sleep
Research Society, and Julie Flygare, Founder, Project Sleep.]
______
Prepared Statement of SMART Recovery
It is an honor to present testimony to the Subcommittee.
SMART Recovery believes that, with regard to the fiscal year 2020
appropriations for the Substance Abuse and Mental Health Services
Administration, of the U.S. Department of Health and Human Services:
--0.8 percent of such sums appropriated for the Substance Abuse
Prevention and Treatment Block Grant program shall be made
directly available to develop the capacity and infrastructure
of evidence-based mutual aid recovery support programs of
national organizations which expressly support Medication-
Assisted Treatment; and
--Grants made pursuant to the Substance Abuse Prevention and
Treatment Block Grant program shall be for purposes which
include developing and sustaining meetings of evidence-based
mutual aid recovery support programs which expressly support
Medication-Assisted Treatment.
We believe that for several reasons.
SMART Recovery is a 25-year-old non-profit (and virtually all
volunteer) evidence-based support program for individuals with
substance use disorders, including opioid use disorders. SMART stands
for Self-Management and Recovery Training, reflecting its focus on
self-empowered mutual support.
The addiction crisis and particularly the opioid epidemic--even
with billions of dollars in appropriations and significant new
authorizing legislation--is years away from being under control. Drug
overdoses alone in 2017 took 70,000 lives--two-thirds of them from
opioids. The 47,000 opioid overdoses that year are well past the peak
of the AIDS epidemic (nearly 42,000 deaths in 1996).
The many causes of the addiction crisis (including the opioid
crisis) have created for the foreseeable future a grisly new normal in
the many people in need of help, including the millions of Americans
suffering from substance use disorders and the family members and
friends trying to care for them.
For inclusion in the hearing record, I am providing a document
titled ``SMART Recovery Fast Facts,'' which summarizes our
understanding of the severity of the problem and how the SMART Recovery
meetings, tools, and program dramatically help people in need. Our
tools and principles are based on the proven cognitive and motivational
therapies most widely used in addiction treatment.
Dr. Elinore McCance-Katz, Assistant Secretary of the Department of
Health and Human Services for Mental Health and Substance Use, has
stated on several occasions that ``Medication-Assisted Treatment
combined with psychosocial therapies and community-based recovery
support is the gold standard for treating opioid addiction.''
SMART Recovery is the largest community-based recovery support
program that expressly and affirmatively supports Medication-Assisted
Treatment and mental healthcare. Better known support programs have not
expressed support, and people undergoing such treatment cannot find the
help they need at many meetings.
If the funds appropriated by Congress and provided via grants to
the States are to be effective, the funds spent on prevention and
formal treatment must be coupled with recovery support that endorses
those other two key components of what Assistant Secretary McCance-Katz
regards as the treatment gold standard, a view widely shared by experts
in the addiction field.
As it stands now, SMART Recovery holds well over 3,000 meetings
worldwide, and about 1,850 meetings within the United States. In order
to address the clear public need in this country, doubling or even
tripling the number of meetings provided by SMART Recovery will be
required.
Based on our accelerating growth rate in recent years, we believe
we are capable of such further growth PROVIDED we had a modest level of
additional outside resources to improve our office and technological
infrastructure and to provide start-up assistance for the new meetings.
Our meetings are free to attend but require trained facilitators (at a
cost of $100 per person), rented rooms, handbooks for attendees,
whiteboards, flip charts, office supplies and administrative support
from SMART Recovery's central office in Ohio.
To serve rural areas and people who cannot attend meetings in
person, we are increasing our number of online meetings that enable
interaction through video links. We currently offer 36 online meetings
and we need to increase that number to at least 100.
It is not uncommon (and we can supply examples of other programs,
including HHS programs) for a very small portion of funds under a block
grant program to be set aside and provided directly on a contract basis
to entities in need of technical and infrastructure assistance that,
once assisted, will help fulfill the purposes of the overall program.
Our other request--that grant recipients use some portion of its
funds for recovery programs that are evidence-based and expressly
endorse Medication-Assisted Treatment--would make the use of other
funds received via grants much more effective.
The State of Connecticut, though the Connecticut Recovery Oriented
Support System for Youth (or CROSS) initiative, has already used a
small portion of funds received from SAMHSA to help develop SMART
meetings statewide for the simple reason that peer support of the type
that SMART Recovery offers makes the other funds provided by Congress
to address the opioid crisis more effective.
As a final point, our requests do not require any level of
appropriations beyond what would otherwise be provided by Congress.
All we request is that a small portion of fiscal year 2020 funds be
used in the most cost-effective way possible to help expand the number
of evidence-based recovery support meetings that--when combined with
the proper medication and mental healthcare--will help alleviate the
addiction crisis, and especially the opioid epidemic.
I will be happy to provide any additional information and to answer
any questions.
Thank you.
[This statement was submitted by Bill Greer, President, SMART
Recovery.]
______
Prepared Statement of the Society for Maternal-Fetal Medicine
On behalf of the Society for Maternal-Fetal Medicine (SMFM), I am
pleased to submit testimony in support of the important work related to
women's and infants' health being conducted at the U.S. Department of
Health and Human Services for fiscal year 2020. SMFM urges Congress to
ensure that the Centers for Medicare and Medicaid Services (CMS),
Centers for Disease Control and Prevention (CDC), National Institutes
of Health (NIH), Health Resources and Services Administration (HRSA)
and Agency for Healthcare Research and Quality (AHRQ) are adequately
funded in fiscal year 2020. Specifically, we urge the Committee to
support a total of $41.6 billion for the NIH, with $1.6 billion of that
total to fund the Eunice Kennedy Shriver National Institute of Child
Health and Human Development (NICHD), $7.8 billion for the CDC, $8.56
billion for the Health Services and Resources Administration (HRSA),
including $698 million for the Maternal and Child Health Block Grant
program, $175 million for the National Center for Health Statistics
(NCHS), $460 million for AHRQ, and continued, sustained, broad support
for the U.S. Department of Health and Human Services and programs
relevant to pregnant and post-partum women and their children.
Established in 1977, SMFM is the medical professional society for
obstetricians who have additional training in the area of high-risk,
complicated pregnancies. Our members see the sickest and most complex
patients, with the goal of optimizing care for pregnant women and their
children. The complex problems faced by some mothers may lead to short-
term or life-long problems for both mothers and their babies, and in
some cases, even death. Such complications can be understood, treated,
prevented and eventually solved through research, quality improvement
and sustained healthcare with adequate research and public health
services.
national institutes of health
The Eunice Kennedy Shriver National Institute for Child Health and
Human Development (NICHD)'s investment in maternal and child health
outcomes is essential to understanding the rising maternal mortality
rates and to optimize maternal and child health.
Task Force Specific to Pregnant Women and Lactating Women (PRGLAC):
SMFM urges Congress to continue its strong support for the PRGLAC Task
Force, housed at NICHD. PRGLAC submitted its report to the Secretary in
the fall of 2018 with 15 recommendations on including pregnant women
and breastfeeding women in clinical trials and broad research
initiatives. We urge Congress to continue to support the implementation
of the PRGLAC recommendations. It is essential that Congress support
broader inclusion of pregnant and lactating women in research is
supported, so that lifesaving interventions and treatments can be
addressed for this population.
Preterm Birth: Delivery before 37 weeks' gestation is associated
with increased risks of death in the immediate newborn period as well
as in infancy and can cause long-term complications. About 20 percent
of premature babies die within the first year of life. Although the
survival rate is improving, many preterm babies have life-long
disabilities including cerebral palsy, mental retardation, respiratory
problems, and hearing and vision impairment. Preterm birth costs the
U.S. $32.5 billion annually. Great strides are being made through
NICHD-supported research to address the complex situations faced by
mothers and their babies. One of the most successful approaches for
testing research questions is the NICHD research networks which allow
researchers from across the country to collaborate and coordinate their
work to change the way we think about pregnancy complications and
change medical practice across the country. These networks deal with
different aspects of pregnancy the problem of preterm birth and its
consequence.
Maternal-Fetal Medicine Units Network (MFMU): We urge continued
strong support of the MFMU, established in 1986 to achieve a greater
understanding and pursue development of effective treatments for the
prevention of preterm births, low birth weight infants and medical
complications during pregnancy. We hope that the NICHD will leverage
the MFMU to build on its success by ensuring its highly efficient
structure of multicenter collaborative research. The MFMU has a strong
history of changing and improving clinical practice and obstetric
management, improving outcomes of pregnant women and babies in the
United States, and is extremely successful, as 25.6 percent of all
publications from the network are cited in clinical practice
guidelines. These guidelines are relied upon by Medicaid and Medicare
programs to define evidence-based services covered under the plans. The
work of the network is even more urgent given the increase in maternal
mortality and severe morbidity in the US. We urge Congress to ensure
stable and sustained funding and infrastructure for the MFMU, and to
ensure that any proposed change in the funding mechanism or structure
for the MFMU not compromise the ability of the network to remain nimble
and directly address the changing landscape of women's health,
including to reduce health disparities.
centers for disease control and prevention
CDC's Division of Reproductive Health (DRH) as well as the National
Center for Birth Defects and Developmental Disabilities (NCBDDD) are
doing important work related to pregnant mothers. The data collection
efforts related to pregnancy outcomes, maternal mortality and
medications in pregnancy must continue. The support from CDC to States
related to data collection and especially maternal mortality review
committees will go a long way toward tackling this growing public
health problem. An estimated 700 to 900 women in the U.S. died from
pregnancy-related causes in 2016, and that number is only rising. SMFM
fully supports Congress' attention to reducing maternal mortality
through CDC's Safe Motherhood Initiative, supporting the highest
possible allocation for this work. Funding for maternal mortality
review committees (MMRCs), perinatal quality collaboratives (PQCs), and
other initiatives that would investigate and transparently report on
maternal mortality causes while reducing health disparities are
essential in tackling our nation's rising maternal mortality rates.
health resources and services administration
The work of HRSA is critical to maternal and child health. HRSA's
initiatives reduce infant mortality, improve maternal health and
wellbeing, and serve more than 50 million people through the MCH block
grant. The MCH block grant is critical to ensure that women and their
children have access to quality care. These funds provide and ensure
access to comprehensive prenatal and postnatal care to women--
especially low income and at-risk pregnant women. The Title V MCH Block
Grant programs save Federal and State Governments money by ensuring
delivery of preventive services to avoid more costly chronic conditions
later in life. Additionally, HRSA's family planning initiatives ensure
access to comprehensive family planning and preventive health services
for more than 4 million people, thereby reducing unintended pregnancy
rates. Finally, HRSA's support for the Alliance for Innovation in
Maternal Health Care (AIM) reduces maternal mortality through
implementation of care bundles at the State and institutional level.
These bundles maternal mortality through quality improvement in various
areas including postpartum hemorrhage and hypertension. We encourage
Congress' support for this important program that will help reduce
maternal mortality nationally.
ahrq
Projects conducted at the Agency for Healthcare Research and
Quality (AHRQ) are critical to ensuring that research is translated
from bench to bedside through comprehensive implementation in the
everyday practice of medicine. Unfortunately, over the past decade,
AHRQ's existence has been under threat. AHRQ is the only Federal agency
that funds research on ``real-life'' patients--those with comorbidities
and co-existing conditions, including high-risk pregnant women are
included. In 2000, an estimated 60 million Americans had multiple
chronic conditions. By 2020, an estimated 81 million people will have
multiple chronic conditions, and the costs of their care will consume
80 percent of publicly funded health insurance programs, such as
Medicare and Medicaid. Unfortunately, the $30 million cut AHRQ
sustained in fiscal year 2016 resulted in the termination of the
agency's portfolio aimed at optimizing care for patients with multiple
chronic conditions. Restoring AHRQ's budget to the fiscal year 2010
level of $454 million will support research to supply providers with
the tools they need to best serve these patients. SMFM urges the
Committee to ensure that AHRQ is prioritized in fiscal year 2010 to
ensure that medical progress into better care for patients today.
conclusion
With your support of vital HHS programs, researchers, clinicians
and patients can continue to peel away the layers of complex problems
of pregnancy that have such devastating consequences and truly improve
the health and wellbeing of mothers and babies.
[This statement was submitted by Dr. Brian Iriye, President,
Society for
Maternal-Fetal Medicine.]
______
Prepared Statement of the Society for Neuroscience
Ms. Chair and members of the Subcommittee, I am Diane Lipscombe,
President of the Society for Neuroscience (SfN) and it is my honor to
present this testimony on behalf of the Society in strong support of at
least a $2.5 billion increase in funding for the National Institutes of
Health (NIH), to $41.6 billion, for fiscal year 2020, including the
release of the 21st Century Cures funding. I am offering this testimony
in my capacity as President of SfN, an association, now entering its
50th year, of nearly 37,000 neuroscientists from all 50 States and
around the world.
As a neuroscience researcher and Director at The Carney Institute
for Brain Science at Brown University, I see the importance of Federal
funding for neuroscience research daily. In my laboratory, funding from
NINDS and NIMH advances our understanding of brain function in normal
and disease States, including chronic pain and psychiatric illnesses.
Sharing the tools developed in our lab, and our discoveries, speeds the
development of new therapies to address unmet clinical needs. Basic
research is essential to find ways to diagnose, treat, and cure
neurological and psychiatric disorders. This requires contributions
from many fields including biology, engineering, mathematics, and
medicine; and continuing to attract young scientists is necessary to
maintain momentum and our lead position in biomedical research and
discovery.
SfN knows the power of the research continuum and that basic
scientists generate clinical innovations leading to translational uses
impacting public health. Basic research is the foundation upon which
all health advances are built, and the future of this research depends
on reliable, sustained funding from Congress. SfN is grateful to
Congress for recent appropriation increases to NIH. Growing the NIH
budget from $30.1 billion to $39.1 billion over 4 years is the
sustained effort that is needed, returning economic and health benefits
for years to come.
SfN stands with the biomedical research community seeking an
increase in NIH funding of at least $2.5 billion above the final fiscal
year 2019 level, including the release of the 21st Century Cures
funding. Moreover, SfN urges Congress to provide relief from the
draconian cuts set to take effect as a result of the Budget Control Act
(BCA). By raising the BCA caps, Congress can ensure that we do not
backslide on previous support for scientific research and discoveries.
Concurrently, our funding request continues the support provided by
this Committee and ensures predictability and stability to scientists
relying on Federal funding.
Equally important to providing a reliable increase in Federal
funding for biomedical research is completing appropriations by
September 30. Your success in completing NIH appropriations prior to
the start of the fiscal year for fiscal year 2019 translated to a
tremendous benefit to scientific progress. Reliance on Continuing
Resolutions (CR) in place of regular appropriations has critical
implications for science, as CRs severely restrict NIH's ability to
fund basic neuroscience research. For some SfN members, particularly
early career researchers, this meant waiting for a final decision on
fiscal year 2018 funding before knowing if their highly meritorious
grant applications would be funded. These uncertainties have real and
negative impacts on the research being done in the lab by undermining
the positive benefits that the research enterprise provides to this
country, and by disincentivizing our best young scientists from
pursuing research careers.
As a neuroscientist previously funded by the Brain Research through
Advancing Innovative Neurotechnologies (BRAIN) Initiative, I appreciate
Congress's support, as it prioritizes technology development to learn
about human brain function from children to adults. While only a part
of the neuroscience research landscape, the BRAIN Initiative is crucial
for future discoveries and innovative solutions. By including funding
in the 21st Century Cures Act, only part of the BRAIN Initiative's
needed funding, Congress is advancing this endeavor. However, using
those funds to supplant regular appropriations is counterproductive.
There is no substitute for robust, sustained, and predictable funding
for NIH-supported research.
The more we know about the basic mechanisms that underlie brain
function, the faster we will advance clinical and translational
solutions for neurological disorders. In this field, we apply a range
of powerful technologies and animal models not used elsewhere in the
research pipeline that have the potential for broad impact. Our
discoveries, sometimes unexpected, advance basic knowledge of brain
function and reveal new therapeutic targets to treat brain disorders
affecting millions of people around the world.
As the leading scientific society seeking to understand the brain
and nervous system, SfN has great impact and reach within and across
disciplines. We host one of the largest annual scientific meetings,
disseminate discoveries through highly-rated scientific journals, offer
extensive educational programming to raise public awareness of brain
research, and engage policymakers in the tremendous progress made in
neuroscience research. We are extremely encouraged by the pace of
discovery in neuroscience and the promise it offers for future
treatments of neurological disorders. Some recent, exciting
advancements include the following:
the impacts of neuroscience research
Treatments for Patients with Movement Disorders
One breakthrough in neuroscience, thanks to Federal funding from
NINDS, benefits patients with Spinal Muscular Atrophy (SMA), the most
common genetic disorder linked to infant death worldwide. SMA impacts
the brain stem and spinal cord and hinders the ability to achieve motor
milestones and mobility. Recent clinical trials using a new therapy is
recovering motor movements in infants with SMA, improving their head
control, crawling, walking, and sitting. This form of therapy may also
benefit those suffering from motor dysfunctions, such as Parkinson's,
Lou Gehrig's, and Huntington's diseases. The basic research critical
for this treatment goes back 25 years, but its potential impact will
likely extend far into the future.
Regulation of Neuronal Communication
My research seeks to understand how neurons communicate with each
other. Brain function is defined by neurons communicating information
from cell to cell, and from one brain region to another. Communication
between neurons is carried across spaces called synapses by
neurotransmitters. The number of neurotransmitters available to
transmit these signals is controlled by ``gatekeepers,'' which ensure
appropriate size responses. Many therapeutic drugs used in the clinic
act on these molecular gatekeepers to dial up or down the flow of
communication in the brain. I describe the basic properties of
gatekeepers and show how they are generated in specific neurons of the
brain and nervous system. My work is basic in nature, but these
findings are used to inform the development of new therapeutics for
treating major neurological diseases, including chronic pain, migraine,
epilepsy, and neuropsychiatric disorders.
Imaging to Understand Brain Function and Disease
The BRAIN Initiative has generated new tools and technologies that
researchers can use to visualize brain activity, including watching
networks of brain cells interact to control behavior. Such advances
will allow us to describe both normal brain function and understand
what goes wrong in brain disease. Until now, most methods used to
visualize a functioning brain caused severe tissue damage. Two-photon
excitation microscopy revolutionized neuroscience in its ability to
view neuronal activity in a living brain tissue with very limited
tissue damage. This technique also allows us to look at the brain in
much more detail with high resolution to detect the points of
connection--synapses--as signals move from one part of the brain to the
other. This, and other powerful imaging approaches, are being combined
to follow and detect abnormal neuronal communication in the brain with
unparalleled resolution. If we can localize abnormal activity to
specific brain regions, we can devise methods to correct abnormalities
in communications between neurons, features of several neurological
disorders.
summary and conclusion
NIH funding is critical for the future of biomedical research and
for training young researchers at the bench, as well as a major driver
of the United States economy. While our Nation is the global leader,
other countries are also investing increasing amounts into biomedical
research. Congress must continue to support basic research in order to
fuel scientific discoveries, maintain our preeminence as a leader in
the field, and continue to drive the United States' economy into the
future. Nearly one in five US adults live with mental illness, early
childhood stress has lasting impacts through adulthood, and the growth
of age-related neurological disorders is still increasing. The only way
to change the trajectory of neurological and psychiatric disorders is
to increase Federal Government investment in biomedical research.
SfN strongly supports at least $41.6 billion for the National
Institutes of Health for fiscal year 2020, including the release of the
21st Century Cures Act funding. Like the Subcommittee, SfN also
supports continuing regular order and avoiding disruptive interruptions
to biomedical research.
On behalf of SfN, I would like to thank Congress for its commitment
and continued support of neuroscience research. Congress, the NIH, and
the scientific research community must continue to collaborate to
assist those suffering from diseases, disorders, and injuries of the
brain and nervous system. Thank you for this opportunity to testify.
[This statement was submitted by Diane Lipscombe, PhD, President,
Society for Neuroscience.]
______
Prepared Statement of the Spina Bifida Association
Distinguished Committee Members thank you for the opportunity to
provide you with testimony of my experiences as a person living with
Spina Bifida. My name is Donna Jones and I am here to represent the
Spina Bifida Association. We are requesting $8 million dollars for the
National Spina Bifida Program, housed at the National Center on Birth
Defects and Disabilities at the Centers for Disease Control and
Prevention.
As a former Capitol Hill staffer, I understand how essential
committee hearings are to the appropriations process.
When I was born on the island of Guam in 1976 the doctors told my
parents, ``She will never walk, never talk, and will be a vegetable the
rest of her life. You already have one healthy daughter; you should
focus on her and institutionalize the other one, just walk away.'' This
April 20th, I will be 43 years old. I love birthdays because with every
passing year I defy all the negative predictions about what my life
would be. I am happy to say I'm part of the first generation to survive
to adulthood. The big obstacle to this is that adult care doctors do
not have protocols in place to treat our myriad of issues. Most have
never had a patient with Spina Bifida. The majority of the Spina Bifida
population remain under the care of multiple pediatric specialists,
these doctors are the only ones who have treated a large number of us.
I may never transition to adult care.
Under the auspices of the Centers for Disease Control and
Prevention, the National Center for Birth Defects and Developmental
Disabilities and the Spina Bifida Association have developed the
National Spina Bifida Patient Registry. The registry stores data on
patients from 24 Spina Bifida clinics in the United States. Its primary
purpose is to collect information on health issues patients are
experiencing, the treatment they received, and will ultimately be
studied to determine the effectiveness of the treatment. My medical
information is part of the Registry. My doctors at Duke University run
a stellar program for treating patients with Spina Bifida, and I hope
my medical history will help develop sound medical treatments so people
with Spina Bifida can live longer, healthier, lives. Even though I live
in California, I travel to the Duke University Pediatric Spina Bifida
clinic to receive care. I'm lucky that I can afford this luxury.
I don't live in fear of my Spina Bifida, but, as I age, I do worry
about my urologic issues. The majority of people with Spina Bifida are
incontinent of bladder and bowel. I do my best to keep my bladder and
kidneys healthy. I drink a lot of water, I catheterize myself
regularly, and I have yearly check-ups with my urologist. I've had more
bladder infections than I can count, and some have sent me to the
hospital. Now, the medicine I take to control my bladder spasms is no
longer working, and this leaves me vulnerable to bladder infections. I
have multiple friends who developed a bladder infection, that spread to
their shunts, and they died as a result. I've also had friends who died
very quickly from kidney failure. Typical of my fellow Spina Bifida
community members, kidney failure, is my greatest concern.
Like 80 percent of people with myelomeningocele (the most common
and most severe type of Spina Bifida), I have a pump, called a shunt,
installed in my head that drains cerebral spinal fluid off of my brain.
My shunt is basically my second heart, I cannot live without it. Excess
fluid on the brain, called hydrocephalus, is incredibly dangerous. It
can lead to irreparable brain damage or death if not treated.
Unfortunately, there is nothing that I can do to keep my shunt
functioning. I am basically at its mercy, and if it does malfunction, I
need brain surgery to have it replaced. The recovery from shunt
revision is long and painful, I count myself lucky that I have only had
14 shunt revisions throughout my life. I have friends, younger than I,
who have endured 50 shunt revisions. But, as a result of my many shunt
revisions, I have developed seizures caused by scarring on the brain. I
take very powerful anti-seizure medicines to keep them under control,
and I'm happy to say this medicine is working very well.
I know I have painted a bleak picture of my life and that of my
friends with Spina Bifida. It was not my intention to shock you. The
truth is, I don't sit at home bemoaning my health problems, and I
absolutely do not allow myself to be sorry that I have Spina Bifida. I
am too busy training in Los Angeles to break the woman's US bench press
record, June 28th of this year. The current record stands at 242
pounds, I intend to break the record with a 260-pound lift. My best
bench press so far has been 235 pounds. I have a long way to go;
however, I am determined to break this record. Just as exciting my
trainer was approached by a producer, who wanted to film a documentary
about my journey to break the record, as well as the Spina Bifida
community. We started filming as soon as I arrived in Los Angeles.
Finally, I have been using a wheelchair for the last 6 years, but I am
now taking physical therapy because I am determined to walk again.
I don't ever want anyone to pity me, I have a wonderful life. I
truly believe I am not a mistake and I was born with Spina Bifida for a
reason. I'm very blessed to have only three surgeries in the last 6
years. I am doing extremely well, I love who I am as a person with a
disability, I have zero regrets. That being said, I hope to see in my
lifetime a cure for Spina Bifida. As much as I love my life, do I want
another child with Spina Bifida to have 32 surgeries as I've had or 60
surgeries like some of my friends? No, I do not want that.
My dear friend and mentor, Tom Baroch, died last November at the
age of 58. I miss him more every day, but I take comfort in knowing he
didn't die of a Spina Bifida related problem. He died from a blood
clot, like so many other people who don't have Spina Bifida. Tom got to
grow old with Spina Bifida. I know most adults don't consider 58 as
old. By Spina Bifida standards I am old as was Tom. My neurosurgeon
jokingly tells me every time I see him, ``Now try to behave, Donna,
because you are old with Spina Bifida.'' He is right, I am old, but I
want the opportunity to grow old enough to look in the mirror and see
wrinkles on my face and more gray hairs on my head than I can count.
This is a dream I never allowed myself to have until I was in my 30's.
I respectfully ask you to increase funding for the National Spina
Bifida Patient Registry as well as additional funding for a
hydrocephalus protocol development. These funds will help those who
come after me live healthier lives and help us all live long enough to
see wrinkles on our faces.
Thank you again for this great honor of giving my testimony. I hope
I have shed light on the value of increasing funding for the great work
that currently is being done by the CDC, it has a direct effect on my
life and that of my community.
Thank you.
______
Prepared Statement of Teach For America--California
Thank you for the opportunity to submit testimony on the importance
of Federal funding for evidence-based teacher training and recruitment
programs at the U.S. Department of Education and the Corporation for
National and Community Service in fiscal year 2020. As the Executive
Directors of Teach For America's four California regions we are pleased
to share the impact that Federal funding has on our mission.
Teach For America (TFA) is a national non-profit that finds,
develops, and supports a diverse network of leaders who expand
opportunity from classrooms, schools, and every sector and field that
shapes the broader systems in which schools operate.
Since 1990, TFA has placed and supported nearly 60,000 teachers in
high-need schools throughout the country, with about two-thirds of our
alumni continuing to work in education. Today, we have a corps of
nearly 6,700 teachers in 51 urban and rural regions in 36 States and
the District of Columbia.
In California, over 700 corps members teach in almost 300 schools
impacting over 64,000 students across the State. TFA teachers work in
the highest-poverty schools and the hardest-to-staff subject areas,
including STEM and English as a Second Language (ESL). In addition, TFA
teachers are one and a half times more diverse as California's general
teaching population with 61 percent of corps members identifying as a
person of color. Every day these teachers are proving that with hard
work, determination, and partnerships across the community, all
students can achieve at the highest levels.
With nearly 29 years of experience in recruiting and training
teachers, our model is among one of the most rigorously evaluated
teacher preparation and leadership development programs in the country.
We rely on external researchers to analyze, validate, and identify
opportunities to improve our programmatic model. A growing body of the
most rigorous research demonstrates that our corps members and alumni
are making a positive impact on students, and we continue to seek
additional data to further strengthen our work.
We believe that the Federal Government should prioritize its
support for programs with evidence of effectiveness, and applaud the
Committee's commitment to results-driven initiatives.
I would like to highlight several of these programs and ask for
your continued support in fiscal year 2020.
Corporation for National and Community Service (AmeriCorps): $1.1 B/
$425 Million
Since 1994, more than 1 million individuals--including TFA corps
members--have served through national service programs like AmeriCorps.
Together, these individuals have provided more than 1.4 billion
hours of service to tackle the toughest problems in our communities.
Unfortunately, many individuals who want to serve, particularly as
educators, face significant economic barriers, including high student
debt and the cost of teacher certification, which make it difficult to
enter a lower-paying profession such as teaching. This is no different
for TFA corps members.
Fortunately, our teachers can use the AmeriCorps Education Award to
pay for college tuition or to pay down student debt. This award also
enables TFA corps members to defer their undergraduate loans for the
first 2 years of teaching and have the interest, which accrues during
those 2 years, paid off by the Federal Government. Without this award,
we would not be able to attract such a diverse and high caliber
leadership force, leaders who stay in California after their corps
commitment and lead at all levels, like our regions' 2,5000+ alumni
teachers, 250+ alumni school administrators, and 65 school system
leaders. Leaders like Alma Delia, a 2012 Los Angeles corps member, who
was elected to the Lynwood School Board in 2013, where she has made
college accessibility and readiness a main priority. Alma also serves
as a digital learning instructional coach for El Rancho Unified School
District, she completed her master's degree in Urban Education at
Loyola Marymount University, and looks forward to continuing her
involvement in the college access movement.
These education awards make it possible for people from all walks-
of-life to join TFA and many other AmeriCorps partner programs. TFA's
partnership with AmeriCorps has helped put tens of thousands of quality
educators in low-income urban and rural areas and developed a diverse
pipeline of leadership for our country. In fact, in 2018, our incoming
TFA corps was about 50 percent people of color compared to less than 20
percent of teachers of color nationwide. In addition, one-third of
corps members were the first in their family to attend college and
nearly 45 percent received Pell Grants.
department of education
Supporting Effective Educator Development (SEED): $94 Million in Fiscal
Year 2020
TFA corps members receive 2 years of ongoing training and support
to prepare them to teach in low-income, high-need schools. The SEED
grant has supported this training by funding TFA's teacher-training
institutes, which all corps members must complete before they enter
their classrooms.
The education landscape has changed dramatically since TFA sent its
first cohort of teachers into the classroom 29 years ago. SEED support
has been critical to adjusting our training to meet the needs of
students and to align with what States and school districts need of
their teachers.
With the support of a 2013 SEED Grant, TFA launched its first
regional training institutes in 2014. These new institutes allowed
regions to build out their own locally driven teacher preparation in
which teachers receive training and teach summer school in the same
communities where they will serve. By tailoring training to the
specific needs of individual communities, we were able to expand
learning opportunities for local students, while also developing
teachers who were familiar with and invested in their local
communities.
With the help of continued SEED funding in 2015 and 2017, TFA has
expanded from two regional institutes in 2014 to 13 in 2018. In
addition, five of our regions that serve predominantly rural
communities worked together to launch the Delta Collective Summer
Institute in Mississippi. Having a training experience grounded in the
unique needs and assets of rural communities will continue to help
foster a corps of teachers who are more engaged and invested in their
rural communities and can serve students living in these communities
more effectively.
The 2015 passage of the bipartisan Every Student Succeeds Act
(ESSA) expanded SEED eligibility to institutions of higher education
engaged in national work, which is why it is important that SEED
funding is restored to the fiscal year 2016 level of $94 million. In
competitions run by the Department of Education after ESSA, of the 24
grants awarded, only 6 (25 percent) of the awards went to national non-
profits and 18 (75 percent) of the awards went to IHEs.
Furthermore, under a pre-ESSA competition in 2015, the Department
of Education awarded 13 new grants (all non-profits), impacting over
50,000 educators serving 7.8 million students. In 2017, the Department
of Education reported that SEED grants under this first ESSA
competition would only reach about 17,000 teachers and 3,000
principals. In 2018, the Department of Education reported that SEED
grants would reach ``more than 12,000 teachers and 1,300 principals''.
The apparent reduction in impact is troubling and it is my hope
that the Committee will direct the Secretary to ensure that grants are
distributed among eligible entities operating programs of national
significance and supporting a significant number of educators in
multiple States and sites to ensure the maximum number of educators and
students across the country are served.
Education, Innovation and Research (EIR): $130 Million
Education Innovation and Research (EIR) grants support new methods
to improve student achievement, increase high school graduation rates,
and improve college enrollment and completion. EIR is unique, as it
requires projects to have a promising model and/or high evidence of
effectiveness in order to win. In addition, grantees must fund an
independent evaluation.
Through a 2010 EIR Expansion grant, TFA was able to pilot new
strategies to attract a more racially and socioeconomically diverse
corps of teachers. In the first year of the grant, 34 percent of the
2011 corps identified as people of color, 30 percent came from low-
income backgrounds, and 22 percent reported being the first in their
family to graduate from college. In the last year of the grant, nearly
half of the 2015 corps identified as people of color, 47 percent come
from low-income backgrounds, a third report being the first in their
family to graduate from college. In addition, by 2015, 20 percent of
corps members had a background in science, technology, engineering, or
math (STEM).
Through a 2017 Early Phase grant, TFA expanded its Rural School
Leadership Academy (RSLA) to serve more than 250 school leaders in
rural communities over the next 5 years. The RSLA is a 1 year
professional development program focused on growing the skills and
mind-sets necessary for individuals to become school leaders in rural
communities. The RSLA not only represents important professional
development for rural teachers, this program is a key tool in our work
to retain great talent in rural communities across the country.
Over the last 5 years, the U.S. Department of Education received
nearly 5,000 applications but made only 156 grants. This is a total
application-success rate of only 3.1 percent. Given this demand from
the education field and EIR's focus on supporting programs with
evidence of effectiveness, we believe that maintaining this funding is
a wise investment.
The President's fiscal year 2020 budget proposal would limit the
program's focus on two priorities: teacher training and STEM
activities. While both are laudable priorities, limiting the focus of
this specific program undermines the original intent of EIR, as
authorized by ESSA, which is to support a number of diverse and
innovative programs throughout the country. It is my hope that the
Committee will ensure that funds appropriated for EIR continue to
support diverse and field-initiated interventions, rather than a single
nationwide program or awards focused solely on one area of educational
innovation.
conclusion
Again, thank you for the opportunity to share these priorities. I
appreciate the challenges that the Committee faces in setting funding
levels across a multitude of worthy programs, and I look forward to
working with you to meet the needs of America's students and teachers.
______
Prepared Statement of Teach For America--Greater Delta
Thank you for the opportunity to submit testimony on the importance
of Federal funding for evidence-based teacher training and recruitment
programs at the U.S. Department of Education and the Corporation for
National and Community Service in fiscal year 2020. As the former
Executive Director of Teach For America-Delta for 18 years and now the
Deputy ED these past 5 years, I am pleased to share the impact that
Federal funding has on our mission.
Teach For America (TFA) is a national non-profit that finds,
develops, and supports a diverse network of leaders who expand
opportunity from classrooms, schools, and every sector and field that
shapes the broader systems in which schools operate.
Since 1990, TFA has placed and supported nearly 60,000 teachers in
high-need schools throughout the country, with about two-thirds of our
alumni continuing to work in education. Today, we have a corps of
nearly 6,700 teachers in 51 urban and rural regions in 36 States and
the District of Columbia.
Teach For America began placing teaches in Arkansas in 1991, then
expanded into Mississippi in 1993. Over those 28 years, TFA partnered
with local communities and districts, and placed a total of 1,074
teachers in Arkansas classrooms and 1,949 teachers in Mississippi
schools. These 3,023 teachers have collective taught some 200,000
children Pre-K--12 and in almost every subject offered. Last year in
Mississippi, students in TFA classrooms on-average grew 1.33 years in
their respective grade or subject. And as a comparison, when I joined
TFA as ED in 1996 we had 5 individuals who had remained beyond their
initial 2-year commitment. Currently, some 500 TFA alumni (3-28 years
after starting the corps) are living and leading in various sectors
within our bi-State region, and 75 percent of that number remain in
some field of education, including 3 State Teachers-of-the-Year, 10
professors, 2 Superintendents, over a dozen school leaders, and the
vast majority are career classroom teachers.
With nearly 29 years of experience in recruiting and training
teachers, our model is among one of the most rigorously evaluated
teacher preparation and leadership development programs in the country.
We rely on external researchers to analyze, validate, and identify
opportunities to improve our programmatic model. A growing body of the
most rigorous research demonstrates that our corps members and alumni
are making a positive impact on students, and we continue to seek
additional data to further strengthen our work.
We believe that the Federal Government should prioritize its
support for programs with evidence of effectiveness, and applaud the
Committee's commitment to results-driven initiatives.
I would like to highlight several of these programs and ask for
your continued support in fiscal year 2020.
Corporation for National and Community Service (AmeriCorps): $1.1 B/
$425 Million
Since 1994, more than 1 million individuals--including TFA corps
members--have served through national service programs like AmeriCorps.
Together, these individuals have provided more than 1.4 billion
hours of service to tackle the toughest problems in our communities.
Unfortunately, many individuals who want to serve, particularly as
educators, face significant economic barriers, including high student
debt and the cost of teacher certification, which make it difficult to
enter a lower-paying profession such as teaching. This is no different
for TFA corps members.
Fortunately, our teachers can use the AmeriCorps Education Award to
pay for college tuition or to pay down student debt. This award also
enables TFA corps members to defer their undergraduate loans for the
first 2 years of teaching and have the interest, which accrues during
those 2 years, paid off by the Federal Government. Given the tremendous
and chronic need for teachers in our two-State region, the Education
Award helps us attract more talent to our region. As college tuition
and student debt continues to soar, the Awards have made it possible
for highly desired, top-notch talent to teach in our region. It has
especially helped us diversify and attract ever greater numbers of low-
income, racially diverse, and in-State talent in our Greater Delta
corps. This year, 48 percent of our incoming Greater Delta Corps had
received Pell Grants in college and 34 percent self-identified as
Individuals of Color.
These education awards make it possible for people from all walks-
of-life to join TFA and many other AmeriCorps partner programs. TFA's
partnership with AmeriCorps has helped put tens of thousands of quality
educators in low-income urban and rural areas and developed a diverse
pipeline of leadership for our country. In fact, in 2018, our incoming
TFA corps was about 50 percent people of color compared to less than 20
percent of teachers of color nationwide. In addition, one-third of
corps members were the first in their family to attend college and
nearly 45 percent received Pell Grants.
department of education
Supporting Effective Educator Development (SEED): $94 Million in Fiscal
Year 2020
TFA corps members receive 2 years of ongoing training and support
to prepare them to teach in low-income, high-need schools. The SEED
grant has supported this training by funding TFA's teacher-training
institutes, which all corps members must complete before they enter
their classrooms.
The education landscape has changed dramatically since TFA sent its
first cohort of teachers into the classroom 29 years ago. SEED support
has been critical to adjusting our training to meet the needs of
students and to align with what States and school districts need of
their teachers.
With the support of a 2013 SEED Grant, TFA launched its first
regional training institutes in 2014. These new institutes allowed
regions to build out their own locally driven teacher preparation in
which teachers receive training and teach summer school in the same
communities where they will serve. By tailoring training to the
specific needs of individual communities, we were able to expand
learning opportunities for local students, while also developing
teachers who were familiar with and invested in their local
communities.
With the help of continued SEED funding in 2015 and 2017, TFA has
expanded from two regional institutes in 2014 to 13 in 2018. In
addition, five of our regions that serve predominantly rural
communities worked together to launch the Delta Collective Summer
Institute in Mississippi. Having a training experience grounded in the
unique needs and assets of rural communities will continue to help
foster a corps of teachers who are more engaged and invested in their
rural communities and can serve students living in these communities
more effectively.
The 2015 passage of the bipartisan Every Student Succeeds Act
(ESSA) expanded SEED eligibility to institutions of higher education
engaged in national work, which is why it is important that SEED
funding is restored to the fiscal year 2016 level of $94 million. In
competitions run by the Department of Education after ESSA, of the 24
grants awarded, only 6 (25 percent) of the awards went to national non-
profits and 18 (75 percent) of the awards went to IHEs.
Furthermore, under a pre-ESSA competition in 2015, the Department
of Education awarded 13 new grants (all non-profits), impacting over
50,000 educators serving 7.8 million students. In 2017, the Department
of Education reported that SEED grants under this first ESSA
competition would only reach about 17,000 teachers and 3,000
principals. In 2018, the Department of Education reported that SEED
grants would reach ``more than 12,000 teachers and 1,300 principals''.
The apparent reduction in impact is troubling and it is my hope
that the Committee will direct the Secretary to ensure that grants are
distributed among eligible entities operating programs of national
significance and supporting a significant number of educators in
multiple States and sites to ensure the maximum number of educators and
students across the country are served.
Education, Innovation and Research (EIR): $130 Million
Education Innovation and Research (EIR) grants support new methods
to improve student achievement, increase high school graduation rates,
and improve college enrollment and completion. EIR is unique, as it
requires projects to have a promising model and/or high evidence of
effectiveness in order to win. In addition, grantees must fund an
independent evaluation.
Through a 2010 EIR Expansion grant, TFA was able to pilot new
strategies to attract a more racially and socioeconomically diverse
corps of teachers. In the first year of the grant, 34 percent of the
2011 corps identified as people of color, 30 percent came from low-
income backgrounds, and 22 percent reported being the first in their
family to graduate from college. In the last year of the grant, nearly
half of the 2015 corps identified as people of color, 47 percent come
from low-income backgrounds, a third report being the first in their
family to graduate from college. In addition, by 2015, 20 percent of
corps members had a background in science, technology, engineering, or
math (STEM).
Through a 2017 Early Phase grant, TFA expanded its Rural School
Leadership Academy (RSLA) to serve more than 250 school leaders in
rural communities over the next 5 years. The RSLA is a 1 year
professional development program focused on growing the skills and
mind-sets necessary for individuals to become school leaders in rural
communities. The RSLA not only represents important professional
development for rural teachers, this program is a key tool in our work
to retain great talent in rural communities across the country.
Over the last 5 years, the U.S. Department of Education received
nearly 5,000 applications but made only 156 grants. This is a total
application-success rate of only 3.1 percent. Given this demand from
the education field and EIR's focus on supporting programs with
evidence of effectiveness, we believe that maintaining this funding is
a wise investment.
The President's fiscal year 2020 budget proposal would limit the
program's focus on two priorities: teacher training and STEM
activities. While both are laudable priorities, limiting the focus of
this specific program undermines the original intent of EIR, as
authorized by ESSA, which is to support a number of diverse and
innovative programs throughout the country. It is my hope that the
Committee will ensure that funds appropriated for EIR continue to
support diverse and field-initiated interventions, rather than a single
nationwide program or awards focused solely on one area of educational
innovation.
conclusion
Again, thank you for the opportunity to share these priorities. I
appreciate the challenges that the Committee faces in setting funding
levels across a multitude of worthy programs, and I look forward to
working with you to meet the needs of America's students and teachers.
______
Prepared Statement of Teach For America--Oklahoma
Thank you for the opportunity to submit testimony on the importance
of Federal funding for evidence-based teacher training and recruitment
programs at the U.S. Department of Education and the Corporation for
National and Community Service in fiscal year 2020. As the Executive
Directors of Teach For America--Oklahoma City & Teach For America--
Greater Tulsa, we are pleased to share the impact that Federal funding
has on our mission.
Teach For America (TFA) is a national non-profit that finds,
develops, and supports a diverse network of leaders who expand
opportunity from classrooms, schools, and every sector and field that
shapes the broader systems in which schools operate.
Since 1990, TFA has placed and supported nearly 60,000 teachers in
high-need schools throughout the country, with about two-thirds of our
alumni continuing to work in education. Today, we have a corps of
nearly 6,700 teachers in 51 urban and rural regions in 36 States and
the District of Columbia. Teach For America Oklahoma is building a
network of leaders who are expanding opportunities for Oklahoma's
children. We begin by recruiting diverse, driven leaders (our corps
members) to commit to teach for at least 2 years in some of our
highest-need schools in Lawton, Muskogee, Oklahoma City, and Tulsa.
Working shoulder-to-shoulder with students, educators, and community
members and with the support of our team, corps members go beyond
traditional expectations to support the academic and personal growth of
their students. The impact corps members have in the classroom fuels a
lifelong commitment to their students and shapes the trajectory of
their lives and careers. Over the course of our alumni's careers, Teach
For America works to support and network them for increasing impact.
Our network of leaders has impacted more than 100,000 students
across Oklahoma since 2009. Today, nearly 250 corps members teachers
work in 64 schools, and over 400 Teach For America alumni are working
in and contributing to the future of Oklahoma. Over the last decade,
Teach For America has placed outstanding teachers in Oklahoma's high
need classrooms, and developed exceptional leaders for all these
sectors critical to shaping a 21st century educational system: leaders
in education, leaders in business/social entrepreneurship, elected
officials, and non profit leaders.
With nearly 29 years of experience in recruiting and training
teachers, our model is among one of the most rigorously evaluated
teacher preparation and leadership development programs in the country.
We rely on external researchers to analyze, validate, and identify
opportunities to improve our programmatic model. A growing body of the
most rigorous research demonstrates that our corps members and alumni
are making a positive impact on students, and we continue to seek
additional information to further strengthen our work.
We believe that the Federal Government should prioritize its
support for programs with evidence of effectiveness, and applaud the
Committee's commitment to results-driven initiatives.
I would like to highlight several of these programs and ask for
your continued support in fiscal year 2020.
Corporation for National and Community Service (AmeriCorps): $1.1 B/
$425 Million
Since 1994, more than 1 million individuals-including TFA corps
members-have served through national service programs like AmeriCorps.
Together, these individuals have provided more than 1.4 billion
hours of service to tackle the toughest problems in our communities.
Unfortunately, many individuals who want to serve, particularly as
educators, face significant economic barriers, including high student
debt and the cost of teacher certification, which make it difficult to
enter a lower-paying profession such as teaching. This is no different
for TFA corps members.
Fortunately, our teachers can use the AmeriCorps Education Award to
pay for college tuition or to pay down student debt. This award also
enables TFA corps members to defer their undergraduate loans for the
first 2 years of teaching and have the interest, which accrues during
those 2 years, paid off by the Federal Government. In the 2018-2019
academic year alone, four of our alumni were named finalists for the
Oklahoma City and Tulsa Public Schools' Teacher of the Year award and
more than 20 of our corps members and alums were honored as a school
site Teachers of the Year. During her first year of teaching, 83
percent of Mia Philichi's ('17, Oklahoma City) students achieved
proficiency on their end of year exam, and 100 percent met proficiency
in English Language Arts. Luke Rose ('17 Greater Tulsa), Christian
Barrera ('17 Greater Tulsa), and Neal Patel ('17 Greater Tulsa) are
also incredible examples of our effective pipeline of educators who
have led their students to remarkable success. As the Hale Junior High
Teach-to-One Math department, their students grew 1.4 years in the NWEA
MAP-Math assessment, a nationally normed and rigorous exam. Their
leadership extends outside their classroom, changing the narrative for
what students at Hale and Tulsa can accomplish. In fact, their team was
recently highlighted by EdWeek, a national education publication, for
their work in creating a data-driven ``super'' team.
These education awards make it possible for people from all walks
of life to join TFA and many other AmeriCorps partner programs. TFA's
partnership with AmeriCorps has helped put tens of thousands of quality
educators in low-income urban and rural areas and developed a diverse
pipeline of leadership for our country. In fact, in 2018, our incoming
corps was about half people of color. In addition, one-third of corps
members were the first in their family to attend college and nearly 45
percent received Pell Grants.
department of education
Supporting Effective Educator Development (SEED): $94 Million in Fiscal
Year 2020
TFA corps members receive 2 years of ongoing training and support
to prepare them to teach in low-income, high-need schools. The SEED
grant has supported this training by funding TFA's teacher-training
institutes, which all corps members must complete before they enter
their classrooms.
The education landscape has changed dramatically since TFA sent its
first cohort of teachers into the classroom 29 years ago. SEED support
has been critical to adjusting our training to meet the needs of
students and to align with what States and school districts need of
their teachers.
With the support of a 2013 SEED Grant, TFA launched its first
regional training institutes in 2014. These new institutes allowed
regions to build out their own locally driven teacher preparation in
which teachers receive training and teach summer school in the same
communities where they will serve. By tailoring training to the
specific needs of individual communities, we were able to expand
learning opportunities for local students, while also developing
teachers who were familiar with and invested in their local
communities. With the help of continued SEED funding in 2015 and 2017,
TFA has expanded from two regional institutes in 2014 to 13 in 2018. In
addition, five of our regions that serve predominantly rural
communities worked together to launch the Delta Collective Summer
Institute in Mississippi. Having a training experience grounded in the
unique needs and assets of rural communities will continue to help
foster a corps of teachers who are more engaged and invested in their
rural communities and can serve students living in these communities
more effectively.
The 2015 passage of the bipartisan Every Student Succeeds Act
(ESSA) expanded SEED eligibility to institutions of higher education,
which is why it is important that SEED funding is restored to the
fiscal year 2016 level of $94 million. Furthermore, the 2017 SEED grant
competition demonstrates a potential unintended consequence of this
policy change. Of the ten organizations awarded grants in 2017, 80
percent were institutions of higher education. Based on this, TFA is
concerned that the original Congressional intent of SEED may be
undermined. As the only Federal funding available to national non-
profits for improving teacher quality, SEED was created to support non-
profits with a national reach to broaden the impact of research-based
teacher preparation and development by bringing it to a national scale.
Further, we believe that the only way we can collectively solve for the
greatest educational challenges is to promote innovation from a
diversity of perspectives across the education field. It is our hope
that Congress and the Department of Education can ensure diversity of
SEED grantees and balance awards to institutions of higher education
and non-profits.
Education, Innovation and Research (EIR): $130 Million in Fiscal Year
2020
Education Innovation and Research (EIR) grants support new methods
to improve student achievement, increase high school graduation rates,
and improve college enrollment and completion. EIR is unique, as it
requires projects to have a promising model and/or high evidence of
effectiveness in order to win. In addition, grantees must fund an
independent evaluation.
Through a 2010 EIR Expansion grant, TFA was able to pilot new
strategies to attract a more racially and socioeconomically diverse
corps of teachers. In the first year of the grant, 34 percent of the
2011 corps identified as people of color, 30 percent came from low-
income backgrounds, and 22 percent reported being the first in their
family to graduate from college. In the last year of the grant, nearly
half of the 2015 corps identified as people of color, 47 percent come
from low-income backgrounds, a third report being the first in their
family to graduate from college. In addition, by 2015, 20 percent of
corps members had a background in science, technology, engineering, or
math (STEM).
Through a 2017 Early Phase grant, TFA is expanding its Rural School
Leadership Academy (RSLA) to serve more than 250 school leaders in
rural communities over the next 5 years. The RSLA is a 1 year
professional development program focused on growing the skills and
mind-sets necessary for individuals to become school leaders in rural
communities. The RSLA not only represents important professional
development for rural teachers, this program is a key tool in our work
to retain great talent in rural communities across the country.
Over the last 5 years, the U.S. Department of Education received
nearly 5,000 applications but made only 156 grants. This is a total
application-success rate of only 3.1percent. Given this demand from the
education field and EIR's focus on supporting programs with evidence of
effectiveness, we believe this increase in funding--which is consistent
with the President's budget request--is a wise investment.
conclusion
I appreciate the challenges that the Committee faces in setting
funding levels across a multitude of worthy programs, and I look
forward to working with you to meet the needs of America's students and
teachers.
______
Prepared Statement of Teach For America--South Carolina
Thank you for the opportunity to submit testimony on the importance
of Federal funding for evidence-based teacher training and recruitment
programs at the U.S. Department of Education and the Corporation for
National and Community Service in fiscal year 2020. As the Executive
Director of Teach For America-South Carolina I am pleased to share the
impact that Federal funding has on our mission.
Teach For America (TFA) is a national non-profit that finds,
develops, and supports a diverse network of leaders who expand
opportunity from classrooms, schools, and every sector and field that
shapes the broader systems in which schools operate.
Since 1990, TFA has placed and supported nearly 60,000 teachers in
high-need schools throughout the country, with about two-thirds of our
alumni continuing to work in education. Today, we have a corps of
nearly 6,700 teachers in 51 urban and rural regions in 36 States and
the District of Columbia. The TFA-South Carolina region opened in 2011
and has placed over 1,030 teachers in districts across the Lowcountry,
Pee Dee, and Orangeburg regions. We are proud to have served over
53,126 students alongside our incredible community members and partner
organizations. On average, since opening our doors in 2011, 27 percent
of our incoming corps has had ties to South Carolina.
With nearly 29 years of experience in recruiting and training
teachers, our model is among one of the most rigorously evaluated
teacher preparation and leadership development programs in the country.
We rely on external researchers to analyze, validate, and identify
opportunities to improve our programmatic model. A growing body of the
most rigorous research demonstrates that our corps members and alumni
are making a positive impact on students, and we continue to seek
additional data to further strengthen our work.
We believe that the Federal Government should prioritize its
support for programs with evidence of effectiveness, and applaud the
Committee's commitment to results-driven initiatives.
I would like to highlight several of these programs and ask for
your continued support in fiscal year 2020.
Corporation for National and Community Service (AmeriCorps): $1.1 B/
$425 Million
Since 1994, more than 1 million individuals--including TFA corps
members--have served through national service programs like AmeriCorps.
Together, these individuals have provided more than 1.4 billion
hours of service to tackle the toughest problems in our communities.
Unfortunately, many individuals who want to serve, particularly as
educators, face significant economic barriers, including high student
debt and the cost of teacher certification, which make it difficult to
enter a lower-paying profession such as teaching. This is no different
for TFA corps members.
Fortunately, our teachers can use the AmeriCorps Education Award to
pay for college tuition or to pay down student debt. This award also
enables TFA corps members to defer their undergraduate loans for the
first 2 years of teaching and have the interest, which accrues during
those 2 years, paid off by the Federal Government. One of many examples
of our leadership theory in action comes from Mr. Brandon Johnson.
Originally from North Augusta, Mr. Johnson joined the corps in 2014. He
taught for 3 years in Marion County and fostered the academic growth of
over 300 middle school students. After the corps, he earned his
master's degree from Coastal Carolina University and currently serves
as an Assistant Principal in Spartanburg School District 7. Most
recently, he completed our competitive Rural School Leadership Academy
Fellowship, which provided him specialized training and development to
one day lead his own school. Mr. Johnson, like so many of our Teach For
America alumni, draws inspiration from a deep belief that all students
in South Carolina deserve the opportunity to attain an excellent
education.
These education awards make it possible for people from all walks-
of-life to join TFA and many other AmeriCorps partner programs. TFA's
partnership with AmeriCorps has helped put tens of thousands of quality
educators in low-income urban and rural areas and developed a diverse
pipeline of leadership for our country. In fact, in 2018, our incoming
TFA corps was about 50 percent people of color compared to less than 20
percent of teachers of color nationwide. In addition, one-third of
corps members were the first in their family to attend college and
nearly 45 percent received Pell Grants.
department of education
Supporting Effective Educator Development (SEED): $94 Million in Fiscal
Year 2020
TFA corps members receive 2 years of ongoing training and support
to prepare them to teach in low-income, high-need schools. The SEED
grant has supported this training by funding TFA's teacher-training
institutes, which all corps members must complete before they enter
their classrooms.
The education landscape has changed dramatically since TFA sent its
first cohort of teachers into the classroom 29 years ago. SEED support
has been critical to adjusting our training to meet the needs of
students and to align with what States and school districts need of
their teachers.
With the support of a 2013 SEED Grant, TFA launched its first
regional training institutes in 2014. These new institutes allowed
regions to build out their own locally driven teacher preparation in
which teachers receive training and teach summer school in the same
communities where they will serve. By tailoring training to the
specific needs of individual communities, we were able to expand
learning opportunities for local students, while also developing
teachers who were familiar with and invested in their local
communities.
With the help of continued SEED funding in 2015 and 2017, TFA has
expanded from two regional institutes in 2014 to 13 in 2018. In
addition, five of our regions that serve predominantly rural
communities worked together to launch the Delta Collective Summer
Institute in Mississippi. Having a training experience grounded in the
unique needs and assets of rural communities will continue to help
foster a corps of teachers who are more engaged and invested in their
rural communities and can serve students living in these communities
more effectively.
The 2015 passage of the bipartisan Every Student Succeeds Act
(ESSA) expanded SEED eligibility to institutions of higher education
engaged in national work, which is why it is important that SEED
funding is restored to the fiscal year 2016 level of $94 million. In
competitions run by the Department of Education after ESSA, of the 24
grants awarded, only 6 (25 percent) of the awards went to national non-
profits and 18 (75 percent) of the awards went to IHEs.
Furthermore, under a pre-ESSA competition in 2015, the Department
of Education awarded 13 new grants (all non-profits), impacting over
50,000 educators serving 7.8 million students. In 2017, the Department
of Education reported that SEED grants under this first ESSA
competition would only reach about 17,000 teachers and 3,000
principals. In 2018, the Department of Education reported that SEED
grants would reach ``more than 12,000 teachers and 1,300 principals''.
The apparent reduction in impact is troubling and it is my hope
that the Committee will direct the Secretary to ensure that grants are
distributed among eligible entities operating programs of national
significance and supporting a significant number of educators in
multiple States and sites to ensure the maximum number of educators and
students across the country are served.
Education, Innovation and Research (EIR): $130 Million
Education Innovation and Research (EIR) grants support new methods
to improve student achievement, increase high school graduation rates,
and improve college enrollment and completion. EIR is unique, as it
requires projects to have a promising model and/or high evidence of
effectiveness in order to win. In addition, grantees must fund an
independent evaluation.
Through a 2010 EIR Expansion grant, TFA was able to pilot new
strategies to attract a more racially and socioeconomically diverse
corps of teachers. In the first year of the grant, 34 percent of the
2011 corps identified as people of color, 30 percent came from low-
income backgrounds, and 22 percent reported being the first in their
family to graduate from college. In the last year of the grant, nearly
half of the 2015 corps identified as people of color, 47 percent come
from low-income backgrounds, a third report being the first in their
family to graduate from college. In addition, by 2015, 20 percent of
corps members had a background in science, technology, engineering, or
math (STEM).
Through a 2017 Early Phase grant, TFA expanded its Rural School
Leadership Academy (RSLA) to serve more than 250 school leaders in
rural communities over the next 5 years. The RSLA is a 1 year
professional development program focused on growing the skills and
mind-sets necessary for individuals to become school leaders in rural
communities. The RSLA not only represents important professional
development for rural teachers, this program is a key tool in our work
to retain great talent in rural communities across the country.
Over the last 5 years, the U.S. Department of Education received
nearly 5,000 applications but made only 156 grants. This is a total
application-success rate of only 3.1 percent. Given this demand from
the education field and EIR's focus on supporting programs with
evidence of effectiveness, we believe that maintaining this funding is
a wise investment.
The President's fiscal year 2020 budget proposal would limit the
program's focus on two priorities: teacher training and STEM
activities. While both are laudable priorities, limiting the focus of
this specific program undermines the original intent of EIR, as
authorized by ESSA, which is to support a number of diverse and
innovative programs throughout the country. It is my hope that the
Committee will ensure that funds appropriated for EIR continue to
support diverse and field-initiated interventions, rather than a single
nationwide program or awards focused solely on one area of educational
innovation.
conclusion
Again, thank you for the opportunity to share these priorities. I
appreciate the challenges that the Committee faces in setting funding
levels across a multitude of worthy programs, and I look forward to
working with you to meet the needs of America's students and teachers.
______
Prepared Statement of the Tourette Association of America
Dear Chairman Blunt, Ranking Member Murray and Members of the
Subcommittee:
The Tourette Association of America (TAA) would like to take this
opportunity to thank the members of the Subcommittee for the
opportunity to submit written testimony and for considering our request
for funding for fiscal year 2020. 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 $2
million appropriation for the program in fiscal year 2020 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). With your support at the previously
enacted level of $2 million, CDC can ensure critically necessary
progress continues in the areas of public education, research and
diagnosis for TS and Tic Disorders.
The TAA is the premier national non-profit organization working to
make life better for all people affected by TS and Tic Disorders. We
have served in this capacity for 46 years. Tics are involuntary,
repetitive movements and vocalizations. They are the defining feature
of a group of childhood-onset, neurodevelopmental conditions known
collectively as Tic Disorders and individually as Tourette Syndrome,
Chronic Tic Disorder (Motor or Vocal Type), and Provisional Tic
Disorder. People with TS and Tic Disorders often have substantial
healthcare costs across their lifespan for healthcare visits, special
educational services, medication, and psychological and behavioral
counseling. In a recent survey conducted by the TAA (2018 TAA Impact
Survey: https://tourette.org/research-medical/impact-survey/), 63
percent of parents struggle to cover the high costs of services for
their child such as counseling, appointments and tutoring; 34 percent
of parents report they lost their job or they are not able to work as
often due to the increased caregiver duties of having a child living
with TS; and, 18 percent of parents are not able to afford medications
and/or desired medical care for their child.
The CDC Tourette Syndrome Website (https://www.cdc.gov/ncbddd/
tourette/data.html) on data and statistics states that data suggests
roughly 50 percent of children and teens with TS are not diagnosed.
Studies including children with both with diagnosed and undiagnosed TS
have estimated that 1 out of every 162 children (0.6 percent) have TS.
However, these numbers do not include children with Chronic or
Provisional Tic Disorders. Based on current research, it is our
estimate that the combined total of all school-aged children with TS or
another related Tic Disorder is approximately 1-in-100. Diagnosis is
often complicated. Among children diagnosed with TS, 86 percent have
been diagnosed with at least one additional mental, behavioral, or
developmental condition according to the CDC website. These co-
occurring conditions include Attention Deficit-Hyperactivity Disorder
(ADHD), Obsessive Compulsive Disorder (OCD), Autism, Oppositional
Defiance Disorder, anxiety, depression, learning difficulties among
others and can significantly impact the lives of those affected by TS.
In fact, in TAA's 2018 Impact Survey, 42 percent of children felt that
dealing co-occurring conditions was one of the biggest challenges in
managing TS. In addition, 32 percent of children and 51 percent of
adults have considered suicide or participated in self-harming
behaviors. The CDC TS Program works to ensure primary care, family
doctors or pediatricians are equipped with the additional knowledge
necessary either to diagnose or to refer a patient for optimal
treatment.
Education professionals often do not receive detailed instruction
on how to assess and accommodate students who may have TS and Tic
Disorders. A study published in the Journal of Developmental &
Behavioral Pediatrics and written in partnership between the CDC and
the Tourette Association of America, ``Impact of Tourette Syndrome on
School Measures in a Nationally Representative Sample'', found children
with Tourette were more likely to have an individualized IEP, have a
parent contacted about school problems and have incomplete homework as
compared to children without Tourette or a Tic Disorder. Additionally,
most children with Tourette Syndrome had other mental, behavioral, or
emotional disorders or learning and language disorders. In TAA's 2018
Impact Survey, 83 percent of children felt that TS negatively impacted
their school experience and education and 69 percent of parents noted
their child having an individualized education plan (IEP) or 504 plan
in place at their school. Educators spend a significant amount of time
with their students providing more opportunities to assess symptoms and
behavior over a longer period of time. By increasing their knowledge
base and understanding of Tourette Syndrome, Tic Disorders and
associated co-morbidities, educators can refer students for medical
assessment and can also better serve the needs of this population whose
challenges are unique to the disorder. Educators can then begin to work
more closely with medical providers to develop effective,
individualized education plans.
TS and Tic Disorders are greatly misunderstood and often suffer
from misinformation and stigma. For example, coprolalia, the
involuntary utterance of obscene and socially unacceptable words and
phrases, is an extreme and rare symptom often sensationalized by the
media. Less than 10 percent of those diagnosed have this symptom, it is
not required for diagnosis, and does not persist in many cases. The CDC
TS Public Health, Education and Research Program provides important
information on symptoms/diagnostic criteria on their website and
through the outreach program educating the public and parents on
Tourette Syndrome and Tic Disorders to ensure a better understanding
which can lead to better diagnosis, earlier treatment and a better
understanding.
Delayed diagnosis or the lack of diagnosis can increase healthcare
costs, increase education costs and delay important treatment and
therapy for the patient. The AAN recently released guidelines (https://
n.neurology.org/content/neurology/92/19/896.full.pdf) on the treatment
of Tourette Syndrome and Tic Disorders recommending Comprehensive
Behavior Intervention for Tics (CBIT) as a first line treatment. 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 teaches people with TS a set of
specific skills they can use to manage their tic urges or behaviors
without having to use voluntary suppression. According to a study
published in the Journal of the American Medical Association in 2010,
``Behavior therapy for children with Tourette disorder: a randomized
controlled trial'', there were significant reductions in tic severity
and improved ability to function in 52.5 percent of children who
underwent CBIT therapy in the study. 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.
The CDC TS program strives to learn more about TS, who it affects,
how symptoms appear and change, if tics are an early indicator for the
co-occurring conditions, the impact of TS across the lifespan of
patients and identifying factors that relate to better or worse
outcomes. Increasing understanding and awareness among the general
public, government officials, doctors and educators is extremely
important for those who live with TS and Tic Disorders.
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 2020 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 Trust for America's Health
Thank you, Chairman Blunt and Ranking Member Murray, for the
opportunity to submit testimony on behalf of Trust for America's Health
(TFAH) to the United States Senate Appropriations Subcommittee on
Labor, Health and Human Services, and Education, and Related Agencies
regarding the fiscal year 2020 appropriations bill.
TFAH is a non-profit, non-partisan organization that promotes
optimal health for every person and community, and our research has
found that investments in public health can save lives and improve the
health of Americans, while also ensuring that our health system is as
cost-effective as possible. Specifically, by investing $8.3 billion for
the Centers for Disease Control and Prevention (CDC), we can start to
make critical improvements and investments for our public health
system, which is facing a number of unprecedented challenges.
Nothing reflects the values of a country more than the health of
its residents. Sadly, Americans are not as healthy as they could or
should be--in large part because we routinely underfund our Nation's
public health system, resulting in paying for treatment in the
healthcare system rather than prevention of disease. For example,
funding for CDC's obesity prevention efforts only equal to about 31
cents per person, even though obesity is a national problem that
accounts for nearly 21 percent of healthcare spending.\1\ Such funding
misalignments can be found across health conditions, including chronic
disease, substance misuse, and infectious disease.
---------------------------------------------------------------------------
\1\ 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.
---------------------------------------------------------------------------
Every community should be safe from threats to its health, and all
individuals and families should have access to high-quality services
that protect and support their health, regardless of who they are or
where they live. But right now, communities across the country face
serious health problems. The U.S. needs a long-term commitment to
rebuilding the Nation's public health capabilities--not just to filling
some of the more dangerous gaps, but also to ensuring that each
community will be prepared, responsive, and resilient when the
unexpected occurs.
By substantively and strategically investing in public health
programs, we can ensure the American people that our public health
system can respond to current and emerging public health challenges.
For fiscal year 2020, TFAH urges the Senate Appropriations Committee to
prioritize public health and support programs within CDC and the Public
Health and Social Services Emergency Fund (PHSSEF), specifically:
emergency preparedness
At a time when natural disasters and outbreaks are occurring with
alarming frequency and severity, insufficient investments in public
health preparedness compromise Americans' safety.
The Public Health Emergency Preparedness (PHEP) cooperative
agreement, the main Federal program that ensures health departments can
protect Americans from the effects of health emergencies, is a
cornerstone of the Nation's health security. Without PHEP funding,
States would not have the resources or infrastructure required to
prepare, respond and recover from a public health emergency. Due to
PHEP funding, all 50 States have improved in nearly all high priority
preparedness capabilities defined by CDC.
The Hospital Preparedness Program (HPP), administered by the
Assistant Secretary for Preparedness and Response (ASPR), provides
critical funding and technical assistance to healthcare coalitions
(HCCs) across the country to meet the disaster healthcare needs of
communities. There are 476 HCCs, comprised of public health agencies,
hospitals, and emergency management and others, develop and implement
healthcare and medical readiness; healthcare and medical response
coordination; continuity of healthcare services delivery; and medical
surge.
Unfortunately, funding for PHEP has been cut by a third since
fiscal year 2003, and funding for HPP has been cut nearly in half. It
is not enough to deliver short-term, supplemental funding after a
disaster occurs. A proper response requires training, plans and systems
that can only be established with consistent, ongoing funds. TFAH-
recommended fiscal year 2020 funding levels:
--Public Health Emergency Preparedness (PHEP) Cooperative Agreement--
$824,000,000
--Hospital Preparedness Program (HPP)--$474,000,000
environmental health
To effectively and efficiently address public health challenges,
data must incorporate environmental impacts on health. Since CDC's
National Environmental Public Health Tracking Network began collecting
data, grantees have taken over 400 data-driven actions to improve
health. Data includes rates of asthma, birth defects, drinking water
quality (including Per- and polyfluoroalkyl substances (PFAS)), lead
poisoning, flood vulnerability, and community design. State and local
health departments use this data to provide targeted resources in
communities with environmental health concerns.
Presently, twenty-six States and one city are funded to participate
in the Tracking Network. TFAH recommends $40 million to launch the
program in at least three more States. With a $1.44 return in
healthcare savings for every dollar invested, the Tracking Network is a
cost-effective program that examines and combats harmful environmental
factors.\2\ TFAH-recommended fiscal year 2020 funding levels:
---------------------------------------------------------------------------
\2\ Return on Investment of Nationwide Health Tracking, Washington,
DC: Public Health Foundation, 2001.
---------------------------------------------------------------------------
--National Environmental Public Health Tracking Network--$40,000,000
obesity and chronic disease prevention
While obesity rates have slightly decreased among young, low-income
children, national obesity rates remain high and continue to rise. In
2015-2016, 18.5 percent of children and 39.6 percent of adults were
obese.\3\ While overall obesity rates are still rising, there are
pockets of success and progress will be at risk if programs are cut and
policies are weakened. Therefore, addressing the obesity epidemic
remains imperative for ensuring the health of the Nation.
---------------------------------------------------------------------------
\3\ The State of Obesity: Better Policies for a Healthier America,
Washington, DC: Trust for America's Health and the Robert Wood Johnson
Foundation, 2018.
---------------------------------------------------------------------------
CDC's Division of Nutrition, Physical Activity and Obesity (DNPAO)
is working to decrease obesity and chronic disease in communities
across the U.S. DNPAO supports healthy eating, active living, and
obesity prevention by creating healthy child care centers, hospitals,
schools, and worksites; building capacity of State health departments
and national organizations; and, conducting research, surveillance and
evaluation studies. Unfortunately, DNPAO only has enough money to
implement State Physical Activity and Nutrition Programs in 16 States.
Additionally, the Racial and Ethnic Approaches to Community Health
(REACH) program, which is housed under DNPAO, works in 31 communities
across the country by employing innovative, community-based, and
participatory approaches to develop and implement evidence-based
practices, empower communities, and reduce racial and ethnic health
disparities.
Funding for the CDC's National Center for Chronic Disease
Prevention and Health Promotion in fiscal year 2019 was $127 million
lower than funds in fiscal year 2012.\4\ To adequately address obesity
and chronic disease, we must invest in preventive and culturally
appropriate strategies. Funding DNPAO and REACH are potentially cost-
saving measures that will save and improve the lives of millions of
Americans. TFAH-recommended fiscal year 2020 funding levels:
---------------------------------------------------------------------------
\4\ The Impact of Chronic Underfunding on America's Public Health
System: Trends, Risks, and Recommendations, Washington, DC: Trust for
America's Health, 2019.
---------------------------------------------------------------------------
--Division of Nutrition, Physical Activity and Obesity (DNPAO)--
$125,000,000
--Racial and Ethnic Approaches to Community Health (REACH)--
$76,950,000
healthy outcomes in schools
We know that fostering healthy behaviors in childhood contributes
to healthy outcomes in adulthood. The risks of teen pregnancy, sexually
transmitted diseases, and sexual violence lessen with high-quality
childhood education.\5\ The CDC's Division of Adolescent and School
Health (DASH) provides education centering health promotion and disease
prevention 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 access
to health services and reduce risky sexual behavior. TFAH-recommended
fiscal year 2020 funding levels:
---------------------------------------------------------------------------
\5\ Promoting Health and Cost Control in States: How States Can
Improve Community Health & Well-Being Through Policy Change,
Washington, DC: Trust for America's Health, 2019.
---------------------------------------------------------------------------
--Division of Adolescent and School Health (DASH)--$50,000,000
opioid epidemic
Opioid misuse is a public health epidemic experienced by too many
communities across the country. From 2000 to 2016, more than 600,000
people died from drug overdoses. On average, 115 Americans die every
day from an opioid overdose, and if current trends continue, more than
1.6 million deaths will occur by 2025.\6\ We simply cannot afford for
this rate to persist.
---------------------------------------------------------------------------
\6\ Pain in the Nation: The Drug, Alcohol and Suicide Crises and
the Need for a National Resilience Strategy, Washington, DC: Trust for
America's Health and Well Being Trust, 2017.
---------------------------------------------------------------------------
Increased funding for the Opioid Overdose Prevention and
Surveillance program in CDC's National Center for Injury Prevention and
Control would: expand prescription drug monitoring programs and
surveillance; strengthen evidence-based prevention efforts that address
lax prescribing practices and adverse life experiences that lead to
self-medication; and strengthen CDC's surveillance systems to translate
data into action by educating consumers and equipping health
departments with resources. As Congress continues to invest in
addressing the epidemic, we urge you to prioritize primary prevention
of substance misuse. TFAH-recommended fiscal year 2020 funding levels:
--Opioid Overdose Prevention and Surveillance--$650,000,000
public health infrastructure
TFAH urges the Committee to include funding for public health
infrastructure, including funding public health data capabilities. The
House fiscal year 2020 bill includes a $100 million down payment on
modernization of CDC and public health department information
technology, data and data systems, and the Senate bill should match
this funding level. A similar proposal was included in the discussion
draft of the Lower Health Care Costs Act, released by Senators Lamar
Alexander and Patty Murray. Data is critical to the operations of
public health, but many health departments rely on archaic systems--
phone, fax, and paper--to communicate time sensitive information on
diseases and outbreaks. These outdated systems result in costly delays
in detecting and responding to outbreaks. TFAH-recommended fiscal year
2020 funding levels:
--Public Health Data Systems Modernization--$100 million
In addition, we urge the Committee to fund core public health
infrastructure as part of any infrastructure package advanced by
Congress. The public health system faces unprecedented 21st century
challenges, ranging from the opioid crisis to extreme weather to
emerging infectious diseases, and is doing so with, in many cases, 20th
century infrastructure--outdated laboratories and technologies, aging
facilities and lack of workforce. Only about half of the U.S.
population is served by a comprehensive public health delivery system,
and in some States, that number is closer to zero.\7\ An investment in
core, cross-cutting public health infrastructure would build a modern,
nimble public health system capable of responding to emerging threats.
TFAH-recommended fiscal year 2020 funding levels:
---------------------------------------------------------------------------
\7\ National Longitudinal Survey of Public Health Systems. In
Systems for Action, 2018. http://systemsforaction.org/national-
longitudinal-survey-public-health-systems.
---------------------------------------------------------------------------
--Core Public Health Infrastructure--$300 million
conclusion
TFAH appreciates the opportunity to present this testimony to the
Committee and we hope that you will continue prioritizing public health
in fiscal year 2020. Sustained, continuous funding for public health
and prevention is vital to the health and well-being of Americans and
will continue the enormous strides in improving population health this
country has already realized. By restoring previous budget cuts and
expanding prevention activities, we will reinforce our ability to
protect and improve the lives of communities nationwide. Thank you.
______
Prepared Statement of the Tuberculosis Roundtable
On behalf of the Tuberculosis (TB) Roundtable coalition, we are
pleased to submit this testimony to the Senate Committee on
Appropriations, Subcommittee on Labor, Health and Human Services, and
Education (LHHS) for consideration in fiscal year 2020 appropriations.
The TB Roundtable is comprised of organizations focused on Federal
advocacy for the domestic and global elimination of TB. Specifically,
we seek to make the subcommittee aware of the valuable public health
role of the Centers for Disease Control's (CDC) domestic TB elimination
program (DTBE) within the National Center for HIV, Viral Hepatitis,
STI, and Tuberculosis Prevention (NCHHSTP), which is currently funded
at $142.2 million in fiscal year 2019. We urge the Subcommittee to
match or exceed the House LHHS funding recommendation for a $10 million
increase to DTBE, a total of $152.2 million in fiscal year 2020. CDC's
mandate is to protect Americans from public health threats at home and
abroad. Yet its work on global TB is underfunded and is mostly
transferred in through other accounts. In addition, we urge the
Subcommittee to commit to reaching the House LHHS increase for $10
million to the CDC's Division of Global HIV and TB (DGHT). We request
that this funding be provided not through the CDC's domestic TB
elimination program, or out of that Division's funding, but rather
through a new budget line for CDC's work in global health.
These increased resources for DTBE are necessary to restore State
TB program capacity, lost through years of flat funding and reductions
in public health staffing, implement the U.S. National Action Plan to
Combat Multi-Drug Resistant (MDR) TB, implement a national TB
prevention program, address ongoing issues in the supply of TB
therapeutics and products, and expand urgently needed research and
development (R&D) for TB. Increases to DGHT will allow the agency use
its unique technical expertise to directly address the nexus between
the global TB epidemic and the TB epidemic in the U.S. TB. A direct
funding stream and increase would help strengthen TB elimination
programs in highly burdened countries, focusing on countries
contributing to the TB burden in the U.S. such as Mexico, Vietnam and
the Philippines.
TB is an airborne disease, causing more deaths than any other
single infectious disease agent globally. Over 10.0 million people
worldwide fell ill with TB, resulting in 1.6 million deaths in 2017
alone.\1\ In 2018, 9,029 people in the United States had TB but 22
States reported TB case increases.\2\ The CDC cautions that these data
demonstrate that the incidence of TB is declining at a slower pace,
dropping from a 4.7 percent annual decline from 2010 to 2014 to 1.3
percent from 2017 to 2018, signaling that we have reached the limit of
what can be accomplished for TB elimination with our existing tools.\3\
Four states--California, Florida, New York and Texas--continue to
account for about half of the reported cases of TB in 2018.\4\
---------------------------------------------------------------------------
\1\ World Health Organization. Global Health Observatory Data--
tuberculosis. https://www.who.int/gho/tb/en/.
\2\ Talwar A, Tsang CA, Price SF, et al. Tuberculosis--United
States, 2018. MMWR Morb Mortal Wkly Rep 2019;68:257-262. DOI: http://
dx.doi.org/10.15585/mmwr.mm6811a2.
\3\ Ibid.
\4\ Ibid.
---------------------------------------------------------------------------
Drug-resistant TB (DR-TB), identified by CDC as a serious
antibiotic resistant threat, poses a challenge domestically. Between
2005 and 2015, there were 1,195 cases of MDR-TB and 31 cases of
extensively drug-resistant TB (XDR-TB) reported in the U.S. This
illustrates that the goal of eliminating TB in the U.S. is unlikely to
be achieved in the 21st century without an infusion of needed resources
to scale-up prevention focusing on those at highest-risk for active TB
disease, and advancing new public health tools to address DR-TB.
DTBE is our frontline defense against this deadly disease and its
mission is to promote health by carrying out public health activities
in preventing, controlling, and eventually eliminating TB in the U.S.
Funding provided to DTBE supports State and local TB programs, which
carry out public health activities to eliminate TB across the U.S.
Furthermore, the domestic TB program also conducts programmatically-
relevant research through its TB Trials Consortium (TBTC), to inform
public health practices and create tools used by programs.
TB was once the leading cause of death in the U.S., but significant
boosting of funding and reorganization of CDC's domestic TB program
aligned resources and research to address escalating outbreaks of DR-TB
occurring among vulnerable communities in the 1980's. In part to
increases in funding, DTBE has been tremendously successful in lowering
rates with strengthened control and prevention strategies over time.
This is a public health success story, and illustration of the critical
importance of adequate and appropriate funding to strengthen and
sustain public health work.
However, the domestic TB program has essentially received flat
funding since fiscal year 2012, which has resulted in stagnant numbers
of TB cases and rates in the past 3 years, a slowing annual decline of
incidence, and the rise of deadlier drug-resistant forms of TB. When
accounting for inflation using the Biomedical Research and Development
Price Index (BRDI)--which calculates how much the cost of conducting
research and public health activities must change each year to maintain
purchasing power--between fiscal year 1994 and fiscal year 2016, CDC's
domestic TB program budget in constant dollars according to BRDI
declined by more than 49 percent.\5\ This gap only continues to grow if
funding increases goes neglected, making it difficult for TB programs
to be prepared for this evolving infectious threat. Further erosion of
funding will only result in erosion of our successes led by our State
and local programs, and new funding increases are needed to sustain
programs to overcome the challenge of eliminating TB in the U.S.
---------------------------------------------------------------------------
\5\ Treatment Action Group. Securing a Tuberculosis-Free Future
through the Visionary Research of the CDC's Tuberculosis Trials
Consortium. January 2018, http://www.treatmentactiongroup.org/sites/
default/files/crag_tbtc_brief_1_10_18.pdf.
---------------------------------------------------------------------------
Further compounding budgetary challenges and stagnation of
resources, have been infrastructural issues related to aging public
health tools in the form of inadequate treatments, diagnostics and
vaccines that are available to combat TB, and disruptions in supply of
current tools. Current DR-TB treatment regimens can involve 250
injections and 15,000 pills over at least a two-year period, and side
effects often ranging to permanent hearing loss, nerve damage,
depression, kidney complications, and other issues. Additionally, a
history of acute TB drug shortages in the U.S. due to unstable market
conditions have had severe public health consequences, limiting efforts
to address outbreaks and challenging efforts to cure those diagnosed
with TB. The drugs are often prone to shortages and in the event of
interruptions in our Nation's TB drug supply, persons with TB disease
may lapse and TB can spread. Treatment interruptions, or incomplete
regimens, can foster drug-resistance. Additionally, treatment costs for
patients with TB disease increases as drug resistance escalates. While
the rate of TB cases may seem low, direct treatment costs in the U.S.
average $19,000 to treat a single case of drug-susceptible TB (DS-TB),
$164,000 for MDR-TB and upwards of $526,000 to treat XDR-TB. Much of
these resources come at the expense of already strained TB program
budgets.\6\
---------------------------------------------------------------------------
\6\ U.S. Centers for Disease Control and Prevention. The Costly
Burden of Drug-Resistant TB in the U.S. https://www.cdc.gov/nchhstp/
newsroom/docs/factsheets/costly-burden-dr-tb-508.pdf.
---------------------------------------------------------------------------
A modest and strategic investment in fiscal year 2020 to strengthen
the CDC's domestic TB elimination program's ability to carry out its
core functions will put our Nation on the path to achieving true TB
elimination, cost-effectively. An estimated 13 million people in the
U.S. have latent TB infection. Investing in TB prevention saves money
long-term by preventing future costlier cases of active TB. In one
analysis, during 1992-2014, 368,184 incident TB cases were reported,
and cases decreased by two thirds during that period through the
strategic implementation of various TB prevention measures.\7\ Modeling
during this time indicates that the societal benefits of averted TB
cases ranged from $3.1 to $14.5 billion.\8\ Another analysis finds a
$43 return on investment for every dollar spent on reducing TB.\9\ With
a nominal increase to the domestic TB program to scale-up targeted
prevention efforts among the 13 million with TB infection, future cases
of active cases can be successfully averted with significant savings to
the public health system. Furthermore, a groundbreaking TB preventative
therapy, called 3HP, has drastically cut down treatment from 9 months
of daily treatment to 3 months of once-weekly treatment was developed
through TBTC. Scaling-up this homegrown treatment innovation through TB
programs in a nationwide prevention effort ensures the practical
implementation of effective taxpayer-funded technologies like 3HP among
those who are most vulnerable to TB, expands access to the benefits of
this science, and get us even closer to full elimination.
---------------------------------------------------------------------------
\7\ Castro KG, Marks SM, Chen MP, et al. Estimating tuberculosis
cases and their economic costs averted in the United States over the
past two decades. Int J Tuberc Lung Dis. 2016;20(7):926-933.
doi:10.5588/ijtld.15.1001.
\8\ Ibid.
\9\ The Economist. The economics of optimism. January 2015 https://
www.economist.com/finance-and-economics/2015/01/22/the-economics-of-
optimism.
---------------------------------------------------------------------------
Additional resources for the domestic TB elimination program can
also help address issues of drug supply--an ongoing national problem--
and contribute to solving the unique challenges of a fragmented market
for TB products. Among the solutions considered could be emulating the
successful Global Drug Facility (GDF) an efficient centralized/pooled
procurement model that was built through U.S. taxpayer support that
could be implemented stateside to stabilize the market and mitigate
shortfalls in the domestic supply for TB products. With a relatively
nominal investment in fiscal year 2020, the HHS Supply Service Center
at Perry Point, Maryland, which currently administers a small stockpile
of TB drugs and serves domestic TB programs by filling gaps in the
supply could be further strengthened and inventory expanded to meet
demand by programs for these important, yet vulnerable, public health
products.
Lastly, the research and development (R&D) role of the TBTC within
DTBE cannot go understated. TBTC research has generated dramatic global
health advancements, for example in the shortening of treatment, which
have led to the changing treatment guidelines from the WHO to national
programs in countries where TB is most endemic. In fiscal year 2020,
the TBTC researchers will engage in a re-competition process to devise
an agenda for the next wave of programmatically-relevant research to
eliminate TB. This is an opportunity to ensure the next 5 years advance
emerging and innovative research we need in the form of new tools.
Recognizing the importance of R&D at the UN High-Level Meeting on TB in
2018, national governments around the world are now committed to
mobilizing resources to meet a globally accepted fair-share target of
contributing 0.1 percent of gross expenditure in R&D towards TB to
overcome a $1.3 billion annual funding gap.\10\ The U.S. government is
the world's leading funder of TB R&D at $313.5 million, of which $18.3
million is contributed by CDC, making the agency the tenth largest TB
R&D funder globally.\11\ However, to capitalize on TBTC's expected re-
competition to strengthen the research agenda and for the U.S. to reach
its own 0.1 percent funding target, an additional $131 million split
among several agencies such as CDC is needed.\12\ Doing so will allow
the U.S. to continue to lead on the research and implementation of new
tools for TB by leveraging its research expertise at CDC to coordinate
with other federally-funded research institutions under LHHS, including
NIAID and BARDA. Continuing to support TB R&D at CDC and other agencies
within the U.S. government can catalyze other national governments to
make similar commitments.
---------------------------------------------------------------------------
\10\ Treatment Action Group. Investing in R&D to End TB: A Global
Priority. November 2017, http://treatmentactiongroup.org/sites/default/
files/Funding%20target%20brief_final_31Oct.pdf.
\11\ Treatment Action Group. Tuberculosis Research Funding Trends
2005-2017. December 2018. http://www.treatmentactiongroup.org/sites/
default/files/tb_funding_2018_final.pdf.
---------------------------------------------------------------------------
In summary, we thank the subcommittee for its continued support for
the domestic TB program at CDC. We fully acknowledge that the
Subcommittee has a difficult task in strategically appropriating
funding within numerous agencies and programs under LHHS with this
year's upcoming budget process. However, we urge you to leverage the
programs and research that the domestic TB elimination program has
pioneered by matching or exceeding the House's funding level at $152.2
million in fiscal year 2020, and we urge the Subcommittee to support a
$10 million increase CDC's DGHT as recommended by the House to allow
the agency to use its unique technical expertise to directly address
the nexus between the global TB epidemic and the TB epidemic in the
U.S. These funding levels will put the U.S. back on the path to
eliminating TB.
---------------------------------------------------------------------------
\12\ Treatment Action Group. Closing the Gap in Tuberculosis
Research Funding: Actions
for U.S. Congress. February 2019, http://www.treatmentactiongroup.org/
sites/default/files/TAG_GERD_brief_leg_v5.pdf.
---------------------------------------------------------------------------
______
Prepared Statement of the U.S. Hereditary Angioedema Association
summary of fiscal year 2020 recommendations
_______________________________________________________________________
--Provide the National Institutes of Health (NIH) with a $2.5 billion
increase in discretionary funding for fiscal year 2020 to bring
overall agency funding up to a minimum of $41.6 billion
annually.
--Continue to encourage advancement and expansion of the hereditary
angioedema (HAE) research portfolio at NIH, as well as research
efforts focused on rare conditions more broadly, through timely
committee recommendations.
--Please provide proportional funding increases for NIH's various
Institutes and Centers leading HAE research efforts, most
notably; the National Institute of Allergy and Infectious
Diseases (NIAID), the National Centers for Advancing
Translational Sciences (NCATS), and the National Heart, Lung,
and Blood Institute (NHLBI).
--Provide the Centers for Disease Control and Prevention (CDC) with
at least a $500 million increase in discretionary funding for
fiscal year 2020 to bring overall agency funding up to a
minimum of $7.8 billion annually.
--Encourage the Centers for Medicare and Medicaid Services (CMS) to
prevent discrimination in health coverage by ensuring rare
disease patients do not face arbitrary restrictions when
seeking charitable assistance to maintain access to life-
sustaining care and therapy, and to prevent from being steered
into Federal need-based and illness-based programs that they
would not otherwise qualify for while properly managing their
illness.
_______________________________________________________________________
Chairman Blunt Ranking Member Murray, and distinguished members of
the Subcommittee, thank you for the opportunity to present the views of
the U.S. Hereditary Angioedema Association (U.S. HAEA) on funding and
related policy items for NIH, CDC, and CMS during consideration of
appropriations for fiscal year 2020. First and foremost, thank you for
supporting these programs in fiscal year 2019. It is our hope that this
invest will continue for fiscal year 2020 to ensure that meaningful
progress can continue in specific, promising areas.
U.S. HAEA is a patient-driven organization comprised of affected
individuals and their families. In this regard, we would primarily like
to recognize this Subcommittee for its leadership and commitment to
providing medical research and public health programs with notable
funding increases for fiscal year 2018. This investment will have a
tangible positive impact for patients by significantly improving
scientific inquiry and public health activities.
U.S. HAEA is a non-profit patient advocacy organization dedicated
to serving the estimated 6,000 HAE sufferers in the U.S. We provide a
support network and a wide range of personalized services for patients
and their families. We are also committed to advancing clinical
research designed to improve the lives of HAE patients and ultimately
find a cure.
HAE is a painful, disfiguring, debilitating, and potentially fatal
genetic disease that occurs in about 1 in 30,000 people. Symptoms
include episodes of swelling in various body parts including the hands,
feet, face and airway. Patients often have bouts of excruciating
abdominal pain, nausea and vomiting that is caused by swelling in the
intestinal wall. The majority of HAE patients experience their first
attack during childhood or adolescence. Approximately one-third of
undiagnosed HAE patients are subject to unnecessary exploratory
abdominal surgery. About 50 percent of patients with HAE will
experience laryngeal edema at some point in their life. This swelling
is exceedingly dangerous because it can lead to death by asphyxiation.
The historical mortality rate due to laryngeal swelling is 30 percent.
a research success story
There was a time not long ago that HAE was a debilitating, and
often life-ending, chronic disease. In addition to the serious health
impacts, affected individuals suffered with trauma, anxiety, and PTSD
stemming from torturous attacks (and the uncertainty of when the next
attack might occur). Due to advancements in medical research, HAE
patients now have access to life-altering and life-sustaining
medications. Properly medically managing the disease now allows many
the freedom to work productively, live independently, and thrive.
While we are appreciative of the scientific progress, much more can
be done. There is no cure of HAE and treatment is highly
individualized. Little is known about the underlying mechanisms of
disease and successful treatment often involves personalized care and a
customized treatment regimen prepared by a leading physician expert
(and trial and error).
NIH has a modest, but meaningful HAE research portfolio. Recent
annual investments will facilitate growth in this portfolio and have
led to important new scientific projects. The ongoing research at NIH
(and complimentary research through the Department of Defense Peer-
Reviewed Medical Research Program) will lead to a time when HAE
patients can move beyond their disease. However, a key question that
remains is how much of this investment is going to rare and ultra-rare
disease research programs, particularly in-light of the ``big ticket''
items that are often now the focus of annual research appropriations.
the importance of proper health coverage and access
The HAE community first became aware of the fact that the Centers
for Medicare and Medicaid Services (CMS) had allowed private insurers
offering marketplace plans to deny coverage to individuals receiving
charitable assistance in 2015 when about a dozen HAE patients in
Louisiana received notices that their coverage was being cancelled due
to the fact someone else had helped them pay their bills. Since that
time, the practice has become pervasive and HAE patients are regularly
informed that they will lose coverage if they receive any charitable
assistance, that they may be committing fraud, and that they may face
legal action if they accept assistance. This dynamic has effectively
become a back door to pre-existing condition discrimination that is
implemented to steer HAE patients into tax-payer funded healthcare.
Moreover, the practice now stretches behind just marketplace plans due
to the inability to address this issue when it first began jeopardizing
health for patients with no alternatives.
Many HAE patients properly manage their illness when they have
proper access to healthcare and treatment. HAE patients would typically
not qualify for need-based or health-based government programs due to
the life-sustaining nature of their treatment. If proper coverage is
lost though, an HAE patient may have to endure a life-threatening
experience of waiting without preventative treatment while they spend
down to qualify for Medicaid or become sick enough to apply for
disability (beyond relying on emergency care once a potentially life-
ending attack occurs).
U.S. HAEA has joined with other patient-driven organizations
experiencing the harm of current pre-existing condition discrimination
facilitated by barriers to charitable assistance and the related
practice of a restrictive co-pay accumulator to form the ad hoc group,
United for Charitable Assistance (UCA). While UCA will submit its own
testimony on behalf of the community under separate heading, we join
with all stakeholders in asking this subcommittee to once again
highlight these rare-disease challenges for CMS and request the current
barriers are resolved to protect patients that have no other reasonable
options to maintain coverage.
Thank you for your time and for your consideration of these
requests.
[This statement was submitted by Anthony Castaldo, President, U.S.
Hereditary Angioedema Association.]
______
Prepared Statement of the United for Charitable Assistance
summary of fiscal year 2020 appropriations recommendations
_______________________________________________________________________
--Please continue to support and advance committee recommendations,
as well as related funding and policy initiatives, which
further encourage HHS and the Centers for Medicare and Medicaid
Services (CMS) to address arbitrary barriers that disrupt
patient access to essential charitable assistance in a
meaningful and timely way.
--Please work with your colleagues to encourage HHS to establish a
transparent and patient-centered regulatory system formally
governing charitable assistance programs that is consistent
with the current framework of OIG opinions and ensures all
policymakers and stakeholders have appropriate mechanism to
address challenges and opportunities in this space.
--Please continue to support investment in medical research through
the National Institutes of Health and public health through the
Centers for Disease Control and Prevention to further improve
care and health outcomes for patients facing complex illnesses.
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray, and distinguished member of
the Subcommittee, thank you for your leadership on health funding and
patient care issues. On behalf of United for Charitable Assistance
(UCA), we deeply appreciate the opportunity to provide a critical,
patient-centered perspective as you consider fiscal year 2020
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 (in a manner consistent with fiscal year 2016 and
fiscal year 2017). Thank you again for this important opportunity.
Please consider UCA a resource on this issue moving forward.
about united for charitable assistance
We are an ad hoc group of patient community leaders that seek to
protect access to the charitable financial support programs, which
serve as a crucial part of the healthcare safety net for individuals
with rare, chronic, and life-threatening medical conditions. We work
together to educate policymakers so they understand the value, impact,
and vital nature of these programs and ultimately support efforts to
actively defend the lives and livelihoods of those facing serious
conditions that can now be better-managed through proper care and
innovative therapies.
about charitable assistance
Over recent years, CMS promulgated rules that effectively allow
private insurance companies to simply deny (or reserve the right to
deny at will) any premium or related healthcare payments made on behalf
of a patient. While these restrictions initially started in marketplace
plans, they have spread to Medigap plans, and various other forms of
coverage. The tangible result of these policies is that patients are
often denied access to mission-driven charitable support from non-
profits, civic groups, and houses of worship. Ultimately, these
restrictions form a back-door to pre-existing condition discrimination
where they are targeted at the most vulnerable populations and patients
lose their coverage due to an inability to utilize available support or
are simply steered towards one of the few remaining plans that has not
implemented restrictions (if they are available in their State). Most
recently, the practice of copay accumulators has taken hold where some
assistance is accepted, but it is never applied to the patient's out-
of-pocket limits, thus rendering the support inconsequential for the
seriously ill.
The situation is particularly dire for patients with rare, chronic,
and life-threatening illness that rely on innovative life-sustaining
medications and who occasionally turn to charities following a job loss
or similar hardship to ensure there is no catastrophic disruption in
access to care. Often times, when properly medicated, these patients
work and contribute to society, and they do not qualify for Medicaid or
similar need-based programs. Further, despite the severity of their
illness, the therapy or medical intervention likely blunts or slows the
progression of their disease meaning they also do not readily qualify
for disability programs. When assistance and access to proper care is
lost, a dangerous situation is created where the dramatic decline in
health rapidly outpaces the patient's ability to transition on to tax-
payer funded safety net programs.
We cannot overlook the fact that many patients in the
aforementioned situation also continue to turn to charitable assistance
during the process of transitioning on to Federal programs as their
illness progresses. The disability waiting periods alone would be
insurmountable for many without charitable assistance. In this regard,
the need for charitable assistance is certainly not mitigated in
Medicare and related programs with some patients utilizing charitable
assistance to make ends meet and cover cost-sharing requirements.
From our experience, there appears to be dangerous misconceptions
that alternatives to charitable assistance exist, that manufacturers
can bridge gaps by voluntarily offering free product as needed, and
that Medicare Part A and hospital emergency rooms can provide a base
solution for those in extreme circumstances. The reality is that no
alternatives exist, there is no comparable or cost-effective substitute
for properly managing an illness, and charitable assistance programs
will need to be an integral part of the healthcare safety net for the
foreseeable future.
When charitable assistance was started decades ago, it was a
benevolent response to real and immediate needs facing the seriously
ill. This assistance was intended to protect those with pre-existing
conditions, prevent medical bankruptcy, and stop involuntary divorce.
These were the same goals shared by the core patient protections
advanced by the Affordable Care Act and supported on a bipartisan basis
in Congress. These patient protections have been an improvement, but
they have not supplanted the need for charitable assistance programs.
contemporary examples of charitable assistance challenges
(patient stories)
Collen.--Colleen is a working mother with two young children from
Connecticut. Her family has health insurance through her husband's
employer. Colleen's family has, relied on a combination of a
manufacture co-pay coupon and non-profit assistance to make ends meet.
Now, the non-profit they relied on no longer offers support, leaving
them with a financial shortfall. To make things worse, their health
insurance plan now refuses to apply their co-pay assistance to their
deductible and out-of-pocket maximum.
Colleen says, ``It is double dipping on the part of the insurance
giants, and it is unconscionable. These co-pay cards are meant to take
the pressure off very sick, very expensive patients. And instead we're
getting hit just as hard, even when we have a co-pay card. We are
seriously considering pulling my daughter from her preschool for next
year because we just can't absorb all these extra healthcare costs.''
Edith.--Edith is in her 70s and a Medicare recipient from Florida
who was diagnosed with a rare, chronic, and life-threatening illness
about 5 years ago. She takes two targeted therapies to manage her
condition. Recently, the non-profit charity she had relied on stopped
offering co-pay assistance.
Edith says, ``after [I stopped getting copay assistance], every
number that I tried either didn't help with my condition or was out of
funds. It was scary there for a while because I don't have that kind of
money to be able to pay that every month. If I didn't have the
medication I wouldn't be around. I would have passed away.'' Edith's
husband adds, ``without her medications she cannot breathe. Without
these drugs I would lose my wife in a day.''
Irene.--Irene is in her 60s and a former building supervisor from
Virginia. She now receives Medicare due to disability. Irene's cost
sharing requirements outpace her fixed income.
The non-profit organization that had been assisting Irene with her
co-pay recently stopped offering funds. Irene said, ``I was a single
mom and over the years worked very hard to support myself and my son,
but there was never enough to save or put away. My [financial
assistance] grant runs out... in 21 days. I don't have a clue as to
what to do...Basically, I have exhausted all means of other resources
and am mentally preparing myself to die.''
______
Prepared Statement of the United States Workforce Associations
Dear Chairman Blunt and Ranking Member Murray:
The undersigned organizations make up the United States Workforce
Association (USWA), a collaborative effort of local workforce boards,
businesses, educational institutions, and organizations involved in
workforce and economic development activities across the country. These
organizations are directly involved in the implementation of the
bipartisan Workforce Innovation and Opportunity Act (WIOA) of 2014,
specifically promoting the successful execution by local workforce
boards of the law to serve businesses, employers, and job--and career-
seekers. With national unemployment levels near all-time lows, the
available labor market faces significant barriers to employment--lack
of high school or post-secondary credential, ex-offender, long-term
unemployed, housing, transportation, child care--and the list could
continue. The employer-led workforce system, which is structured using
the Workforce Innovation and Opportunity Act (WIOA), is poised to
address these community needs but has not been funded to its authorized
levels since it was passed by Congress in 2014.
As the Senate Appropriations Committee considers the fiscal year
2020 Labor-HHS Appropriations Bill, we urge you to support further
Federal investment into WIOA and fully fund the law to its 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. Local workforce development boards are currently
executing on these strategies working directly with employers to
address their talent needs.
With sustained economic prosperity for America as a priority, this
increased Federal investment could not come at a more opportune time.
The skills gap is real and workforce boards are on the front lines with
various stakeholders including employers, community colleges, post-
secondary institutions, high schools, non-profits and career and
technical education programs, to address the problem.
Without a spending cap/budget deal in place, these programs are at
serious risk for harmful sequestration cuts when we can least afford
them as a Nation. The fiscal year 2020 Labor, Health and Human
Services, Education, and Related Agencies Appropriations bill must
fully fund all Titles I, II, III, and IV at the level authorized by the
Workforce Innovation and Opportunity Act (WIOA).
The funding levels we are requesting in the fiscal year 2020 Labor,
HHS, Education Appropriations Bill are listed below:
Title I--Department of Labor
--$899.987 million for Adult Employment and Training Services,
--$963.837 million for Youth Workforce Investment Activities, and
--$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
--$663,052,000 for Wagner-Peyser (Fiscal Year 2019 Enacted)
Title IV--Department of Education
--$3,521,990,000 for Vocational Rehabilitation Services (Fiscal Year
2019
Enacted)
fiscal year 2020 administration budget proposal language
We also wanted to highlight concerning language contained in the
fiscal year 2020 Department of Labor Budget Proposal that would give
Governors more authority to re-designate and consolidate local
workforce boards. The budget proposal language would waive protections
given to local control by circumventing Section 106 of the Workforce
Innovation and Opportunity Act (WIOA). Congress recognized that local
economic conditions are best addressed at the local level when WIOA was
passed in 2014. That local control is critical when dealing with
employers and other stakeholders as we can address economic issues with
flexible resources and innovative solutions. We oppose the language
included in the budget and encourage you to further support local
control within the Federal workforce system.
This training, support and business partnership is vital to our
country's economic prosperity.
Sincerely.
______
Prepared Statement of the United Tribes Technical College
United Tribes Technical College (UTTC) is celetrating fifty years
of educational service, twenty-five years as a 1994 Land Grant
Institution, and thirty-seven years of accreditation by the Higher
Learning Commission. The ongoing mission and vision are to train
American Indian students with vocations that will provide them with the
skills they need to take care of themselves and their families while
they contribute to their nations and society. The legacy of workforce
development and employment training continues through the offering of
certificates and associate and bachelor degrees. Eighty-nine percent of
our students are enrolled in certificate and associate degree programs
of study.
Our students are, by and large, from low-income families and come
from many tribal nations (48 in 2017). We are governed by the five
tribes located wholly or in part in North Dakota. UTTC is not part of
the North Dakota University System and does not have a tax base;
however, we do receive limited State-appropriated funds for non-Native
students. The fiscal year 2020 funding requests of UTTC for the
Department of Education are:
--$10 million for base funding authorized under Section 117 of the
Carl Perkins Act for the Tribally Controlled Postsecondary
Career and Technical Institutions program. This is $436,000
above the fiscal year 2019 enacted level and $1.7 million above
the Administration's request. These funds are awarded
competitively and distributed via formula. We would like a
change to the formula that is not so reliant on Indian Student
Count in order to avoid dramatic swings in annual awards.
--$65 million in discretionary funds as requested by the American
Indian Higher Education Consortium for Title III-A of the
Higher Education Act (Strengthening Institutions program).
Normally, the Title III-A request would be about half that
amount but the Title III-A Part F mandatory funding has expired
and unless the funds are reinstated the shortfall needs to be
made up with discretionary funding. The total fiscal year 2019
amount for Title III-A Parts A and F was $61.8 million.
--Sufficient funding for the Pell Grant program to provide the
maximum grant. We support the Administration's request to
provide the maximum Pell Grant award of $6,195 and to expand
eligibility to students enrolled in high-quality short-term
programs that lead to a credential, certification, or license
in a high-demand field. Eighty 4 percent of our degree-seeking
students received Pell Grants for the 2017-2018 academic year.
Tribally Controlled Career and Technical Institutions
Acquisition of additional base funding is critical. We struggle to
maintain course offerings and services to adequately provide
educational services at the same level as our state counterparts.
Perkins funds are central to the viability of our core postsecondary
education programs. Very little of the other funds we receive may be
used for core career and technical educational programs; they are
competitive, often one-time targeted supplemental funds. Our Perkins
funding provides a base level of support while allowing the college to
compete for desperately needed discretionary funds.
We highlight several recent updates of our curricula to meet job
market needs. First, at the certificate level, UTTC recognized the need
for more certified welders and heavy equipment operators in relation to
the oil boom and expanded these programs in response to the workforce
need. Our most popular certificate programs are the sixteen-week Heavy
Equipment Operator Program and the nine-month Welding Technology
Program. UTTC is now the only welding test site in the State of North
Dakota approved by the American Welding Society, and while the North
Dakota Bakken oil boom has diminished, these professions remain in
demand. We are now able to train students for good paying in-demand
employment with a focus on career rather than just a job.
Our Criminal Justice and Business Administration programs are set
up as a
2 + 2 program with the associate degreees setting the foundation for a
bachelor's degree. We are well situated to provide basic and
supplemental law enforcement training for the Great Plains tribes and
urge your support with the Department of Interior/Bureau of Indian
Affairs to work with us and tribes on the establishment of a Northern
Plains Indian Law Enforcement Academy at UTTC.
Funding for United Tribes Technical College is a good investment.
We have:
--An unduplicated count of 525 students in 2017-18. There were 494
undergraduate degree-seeking students, 4 non-degree seeking
students, and 27 dual credit high school students enrolled.
There were 1,531 continuing education students for a total
student count of 2,056 for 2017-18.
--Our students are very low income. Approximately 84 percent (407) of
the 494 degree seeking undergraduate students at UTTC received
Pell grants for the 2017-18 academic year.
--From 2017--2018, UTTC had a fall to fall retention rate of 51.4
percent and a 2017 fall to spring semester persistence rate of
74.7 percent.
--Using the North Dakota state longitudinal data system, which tracks
graduates who gain employment within North Dakota, 56 of the 87
graduates were employed in North Dakota for a placement rate of
64 percent. (Note, this number does not include those who may
have been employed outside of North Dakota.)
--The fall graduates from December 2017 who were employed in North
Dakota earned an average of $7,414 in the third quarter after
they graduated, which averages about $29,656 annually. In
addition, 38 of the students who graduated continued their
education.
--A projected return on Federal investment of 20-1 (2005 study).
--Higher Learning Commission Accreditation through 2021. A 2017
campus site visit indicated we have a firm foundation for
furthering efforts as a data driven institution.
--Campus services include: a Child Development Center, family
literacy program, wellness center, area transportation, K-7
BIE-funded elementary school, tutoring, counseling, family and
single student housing, and campus security.
--A critical role in the regional economy. A North Dakota State
University study reports that the five tribal colleges in ND
made a direct and secondary economic contribution to the state
of $192,911,000 in 2016 and UTTC had a $59.6 million direct and
secondary economic impact on the Bismarck/Mandan communities
for the same period.
Title III-A (Section 316) Strengthening Institutions
The Title III-A Strengthening Institutions funding is very
important for all the tribal colleges and we support the American
Indian Higher Education Consortium's request of $65 million for
discretionary funding if the $30 million mandatory (Part F) funding is
not restored. While these are not operational funds, they are critical
for developmental activities and provide an opportunity for a modest
amount of construction funding. We share with the other tribal colleges
serious issues of inadequate physical infrastructure.
We are in need of additional student family housing as our waiting
list averages 49 student families over the course of the year. Students
who do not receive campus housing rent in Bismarck with average monthly
rent ranging from a one bedroom at $800/month to $1,250 for a three
bedroom apartment. Of the students who reside on campus, approximately
twenty-five percent are housed in the 100-year-old buildings of what
was previously Fort Abraham Lincoln and the other 75 percent of
students reside in homes donated by the Federal Government in 1973.
These buildings require major rehabilitation.
Title III funds provide much needed support to strengthen academic
offerings and infrastructure. Specifically, Title III has been
instrumental in the College's efforts to provide Baccalaureate
programs, online Associate programs, and increase the technology
infrastructure necessary to support student learning and campus
management functions. Professional development activities have been
supported by Title III resulting in enhanced intellectual and technical
capacity of faculty and staff.
Additional activities carried out with support of Title III funding
have been associated with increasing the College's Institutional
Resources capabilities in order to strengthen relationships with alumni
and forming relationships with organizations and individuals who may
become supporters of the College. With the current Title III award, the
College is anticipating expanding academic offerings through the
development of a Master's level program. The support of Title III will
be critical for attaining accreditation approval, program development,
and acquiring highly qualified faculty.
Some members of your Subocmittee have made a point to visit places
in Indian Country and we would love to be able to arrange for you to
visit United Tribes Technical College. Thank you for your consideration
of our requests. Hecetu yedo. (It is so).
[This statement was submitted by Leander R.McDonald, PhD,
President, United Tribes Technical College.]
______
Prepared Statement of Walberg Donna Walberg and Lee Walberg deg.
Prepared Statement of Donna Walberg and Lee Walberg
Dear Chairman Blunt:
My husband who has Alzheimer's disease and I support a $6,000,000
increase in funding of for the Administration of Community Living's
Alzheimer's Disease Programs Initiative (ADPI) for a total of
$29,500,000. This program supports and promotes the development and
expansion of dementia-capable home and community-based long-term
services and support systems in States and communities. In the State of
Minnesota, for nearly 20 years, ADPI grants have funded initiatives
that have built infrastructure to serve families in both rural and
urban communities, created culturally appropriate caregiver education,
and worked with healthcare systems to become dementia capable.
Minnesota has long been known as a leader in the field of dementia,
with our Act on Alzheimer's Initiative we developed one of the most
influential and highly regarded State Alzheimer's plans in the Nation.
Minnesota has created more than 50 Dementia Friendly Communities. St.
Cloud where we live is one of them.
My husband Lee, the love of my life, was diagnosed with Alzheimer's
Disease in 2012. We both cried, it was a devastating diagnosis, even
though he had been symptomatic for several years. He is now in the mid
stage of the disease moving slowly but steadily to late stage. We are
fortunate that he was diagnosed early by a physician knowledgeable
about the disease. We were quickly referred to a well known neurologist
and neuropsychologist who are leaders in the field. We participated in
two clinical trials. Both seemed to slow the progression of the disease
but as has become clear there will be no cure for people who currently
have the disease. This makes maintaining and increasing the funding for
the ADPI program doubly important. At 61 my husband was young when he
was diagnosed, he had to leave his job years before he was ready to, I
am working part-time into my retirement years to pay for the additional
care my husband is beginning to need while still providing most of the
care and support myself. It is challenging and exhausting.
ADPI Grants Built a Dementia Capable State
ADPI grants in Minnesota developed a comprehensive education
program for professionals and para professionals in the field. Over the
nearly 20 years of the grants thousands of providers have been trained
in the best practices of supporting a person with dementia and their
caregivers to continue to live independently as long as possible.
Because of this initiative I am able to hire a care provider, Karen,
who stays with my husband when I need to travel for work or just need a
spa day with a friend. I did not need to train her, she already knew
how to communicate with him (he's lost the ability to form words and
make sentences easily), she already knew how to discover his rituals
that make his day smoother and treats him with unfailing respect and
patience. Minnesota has a cadre of these care providers that can be
hired through a home care agency or directly as we do. As my husband
progresses, Karen and her fellow providers will make it possible for me
to continue to provide the care my husband needs at home, hopefully
until he dies, that is our goal. Without the ADPI funded dementia
capability training this would not have been possible. As knowledgeable
as I am, I could not have provided the training that Karen needs to
support my husband.
ADPI Grants Created Caregiver Supports that are Embedded in Existing
Services
ADPI funding supported the development of caregiver supports in
rural and urban communities in Minnesota. Minnesota's implementation of
the evidence-based New York University Caregiver Intervention (NYUCI)
received the Rosalynn Carter Institute on Caregiving Award. This
program provides caregivers and their families with individual and
group counseling sessions and was shown to delay nursing home placement
on average 18 months in a randomized controlled trial. Through ADPI
grants other evidence-based services for caregivers have been embedded
as usual care in Minnesota's caregiving infrastructure including REACH
Community and the Savvy Caregiver. I'm a graduate of the Savvy
Caregiver program and I cannot tell you how that program saved my life.
I was stressed beyond belief and grieving along with my husband all his
losses. As a result of the Savvy Caregiver program, I now meditate
regularly, make sure that I have time with my friends, have a more
balanced work schedule and found and hired Karen to relieve me when I
need it. My involvement in the NYUCI taught me how to ask our adult
children to help out on a regular basis with chores, helped me to begin
to hire out the chores they couldn't do and made us a family care team
so I'm not alone in making all the decisions. Because they are care
partners, they are richly involved in their Dad's life. While bit by
bit we are losing him, we are also experiencing all the joy of the many
things he can still do. This is a joy that our children, my husband and
I would not have known without the NYUCI. Caregivers often die before
the person with dementia because of overwhelming grief and burden.
Because of ADPI funding, caregivers, their families and the person with
dementia can celebrate life fully and live out each day with fresh
vigor. I know my husband is progressing so slowly because of the
support that I get.
ADPI Grants Helped to Build Dementia Capable Health Systems
Hundreds of physicians and advanced practice healthcare providers
have received in person education and training to identify people who
have possible dementia during regular healthcare visits, complete a
diagnostic work-up and engage in joint care planning to ensure that the
person with the disease is diagnosed early and they and their caregiver
are connected to the services and supports that they need on an ongoing
basis. Essentia, Health Partners, Allina and other large and small
health systems in Minnesota have embedded or are beginning to embed
these practices as routine care in their clinical practices and in
their electronic medical records systems. The connections that they
help make as well as their ongoing communication with the person with
the disease, their caregivers and the community services provide a
critical safety net ensuring that care and support is provided by both
the healthcare system and the community as it is needed. My husband was
diagnosed early because of his health systems adoption of dementia
capable practices. My physician connects with me regularly to make sure
that I'm keeping up with my own healthcare and getting the support I
need as a caregiver.
As a country we all benefit from the synergies that are created
when the healthcare system works closely with the person, their family
and community services. The benefits go far beyond the accrued
financial savings. My husband's neurologist says that he is their star,
they have never seen anyone progress as slowly as he has. We have more
precious family moments. I'm healthy and thriving, not weighted down by
grief and worn out by care. Our circle of partners in care has grown
wider and stronger. We are blessed.
In summary, over the past 20 years, the Federal Alzheimer's
program, now known as the ADPI, has transformed the delivery of
dementia care in Minnesota, particularly in rural communities and
cultural communities in urban centers. Furthermore, the work created in
Minnesota has influenced care across our Nation.
We encourage the Labor Health and Human Services, Education, and
Related Agencies Subcommittee to robustly fund this program. Funding of
$29,500,000 will ensure that families impacted by Alzheimer's and other
dementias are not only supported, but connected with appropriate
resources, services, and supports from within their communities. This
is the primary Federal program focused on the development of home and
community-based long-term care services and supports that can help
families keep their loved ones in their home.
We thank you for this opportunity to speak about the impact and
importance of the Alzheimer's Disease Program Initiative and hope that
by sharing the impact of this program on our family and our State, we
can motivate you to preserve its funding and integrity.
Sincerely.
______
Prepared Statement of World Vision US
Mr. Chairman, Ranking Member Murray, and members of the
Subcommittee, I am submitting this testimony for your consideration on
behalf of World Vision, one of the largest faith-based organizations
working in humanitarian relief and development. Specifically, I ask
that the Subcommittee seek to fund the Department of Labor's Bureau for
International Labor Affairs (ILAB) at $91.125 million, including
$58.825 million for the child labor grants program, $7.5 million for
the worker rights program, and $6.04 million for program evaluation.
World Vision US has more than one million private donors in every
State and Congressional district, partners with over 16,000 churches in
the United States, and works with a wide variety of corporations and
foundations. We are motivated by our Christian faith to serve every
child in need and their family; those of any faith, or none. We partner
with faith leaders throughout the world, equipping them to meet the
needs of their communities.
We are part of a global World Vision Partnership, which implements
programming to help children, families and communities through
international relief, development, and advocacy assistance. Although
private donors support the foundation of our work, the U.S. Government
is an invaluable partner as we work to achieve our broad goals for
children. We leverage this partnership to reach vulnerable children and
families in nearly 100 countries around the world, ensuring that the
precious resources of the American taxpayer are prudently used to
promote and protect the well-being of children and communities abroad.
We also use this partnership with the U.S. government to leverage
private funding. We've successfully used grant funded programs to spur
private fundraising from both corporations and individuals and to
leverage and integrate resources in a way that ensures taxpayer dollars
go further. Through World Vision's work around the world, we see the
impact that violence and exploitation can have on children and their
families. 73 million children are in hazardous child labor which
prevents them from attending school and is harmful to their physical,
mental, and social development. Boys and girls around the world work in
agriculture, mining, quarrying, fishing, factories, domestic work, and
commercial sexual exploitation. 4.3 million children are in forced
labor, including in situations of trafficking. The work of Department
of Labor's Bureau of International Labor Affairs and its partners
protect children from exploitation and violence, allowing them the
opportunity to fulfill their full potential and contribute positively
to their communities and countries. This work also supports the US
Government's Action Plan for Children in Adversity (APCA), which is a
whole-of-government framework for providing protective family care and
an environment for children that is free from deprivation,
exploitation, and danger. ILAB's anti-child and forced labor work
encourages global economic growth and addresses exploitative business
practices that undercut American workers and companies.
Our global economy feels the impact of violence against and
exploitation of children. The economic costs of child labor amount to
2.4-6.6 percent of the world's gross national income annually. The
global income lost by children out of school and instead engaged in
hazardous work amounts to $176 billion annually. Child labor impacts
the economies of U.S. Government trading partners and the investments
the U.S. Government makes in other areas of development and trade.
Child labor depresses wages and earning potential of future workers,
keeping economic growth and achievement of development objectives
stagnant. The cost to children, communities, and the global economy is
too great for the U.S. government to step back from its leadership role
in ending child labor and forced labor.
Since 1995, the Department of Labor through the Bureau for
International Labor Affairs' Office of Child Labor, Forced Labor, and
Trafficking has worked with partners to directly impact the lives of
nearly two million children vulnerable to exploitative labor, combat
forced labor, and address worker rights in countries with which the
United States has trade agreements or preference programs. To address
child labor, ILAB programs take a holistic approach, including
community and government involvement to increase access to education
for children and support livelihood opportunities for families to meet
basic needs and reduce reliance on child labor. ILAB has been a leader
in the global fight to end child labor. Since 2000, child labor has
been reduced by half globally, in no small part due to the efforts of
the U.S. through ILAB.
World Vision is one of many ILAB partners working to address
hazardous child labor through education interventions, strengthening
family livelihoods, increasing accountability of employers towards
child labor standards, and sustainably building the capacity our local
and national governments of countries which the U.S. has trading
relationships with. For example, in Ethiopia, World Vision is working
to address exploitative child labor by helping youth ages 14-17 develop
marketable skills to secure appropriate work and serve as community
leaders. The project aims to reach 12,000 Ethiopian male and female
youth, both in school and out of school, and their 7,500 households. In
the Philippines, World Vision, through funding from the Bureau for
International Labor Affairs, implemented the ABK3 Livelihoods,
Education, Advocacy, and Protection to Reduce Child labor in Sugarcane
Areas (ABK3 LEAP) project from 2011 to 2015. The project reduced child
labor in target communities by 86 percent while providing education
opportunities and necessary resources for families to keep children out
of hazardous forms of work.
In the Philippines, the perceived (or real) lack of quality
education, difficulty staying caught up with class work, and economic
drivers contributed to child labor and school dropout. To address these
challenges World Vision worked with 12,310 students in over 250 schools
to help struggling learners revive their interest and improve their
participation in school through the Catch-Up program. Catch-Up
complemented learning in the classroom and was notably important during
the start of the sugarcane harvest season when students are more likely
to work in the field after school with some eventually dropping out of
school. The Catch-Up program trained peer teachers (Little Teachers) to
support students who were struggling in their studies and boosted
students' confidence in their skills while promoting engagement with
learning material in the classroom. As a result, junior high school
enrollment increased by 36 percent between 2012 and 2015. In the 2014-
2015 school year, school attendance increased and the number of
students dropping out decreased to nearly zero. The number of children
who did not repeat a year level in school increased by 10 percent in
2015. This innovative and effective outreach to struggling students
significantly contributed to the success of the project in reducing
child labor and increasing school enrollment.
While we acknowledge the constraints and challenges of our current
fiscal climate, ILAB's grant program supports economic growth for our
trade partners and ensures our trade partners are effectively
implementing labor standards. ILAB combines understanding the problem
of child labor and forced labor through research with targeted,
effective action to measurably reduce child labor and forced labor.
Past proposals to end ILAB's programming to combat exploitative child
labor would functionally end all U.S. programming to reduce
international child labor and would directly impact the roughly 150,000
children annually who benefit from ILAB funding. ILAB's grant program
not only benefits the children and families we serve, but creates the
opportunity for American workers and companies to compete more
effectively in the global economy.
As an organization that has worked with ILAB we can attest to the
rigor of their programs and the critical support that their staff
provide. ILAB is among the most rigorous donors that we work with,
requiring a level of evaluation to ensure effectiveness that is not
found in many other donors. They are setting a high standard for the
effective and targeted use of U.S. taxpayer dollars. After more than
twenty years addressing child labor and forced labor, ILAB's work is an
asset to the U.S. government and provides leadership in international
arenas. Presently, eight U.S. offices within the Department of State,
USAID, and the Department of Labor fund programs that focus or include
a component on ending violence against children globally. Almost 50
percent of spending in fiscal year 15 to end violence against children
came from ILAB. As the subcommittee considers funding levels for fiscal
year 2019, we hope you will take into consideration the impact of ILAB
programs and the value they provide in building a better world for
children and for American workers and companies.
The number of children in child labor is declining but progress has
slowed significantly--child labor only declined by 9.7 percent from
2012-2016 compared to 22 percent during the 4 years prior. If progress
continues at the current pace, 121 million children will still be
engaged in child labor in 2025. It will take an extra push in the
coming years not only to renew the rate at which we fight child labor,
but also to reach the most vulnerable children, in the hardest to reach
places. I ask that the Subcommittee seek to fund the Department of
Labor's Bureau for International Labor Affairs at $91.125 million for
the Bureau of International Labor Affairs, including $58.825 million
for the child labor grants program, $7.5 million for the worker rights
program, and $6.04 million for program evaluation.
Thank you for the opportunity to provide written testimony and for
considering this request.
[This statement was submitted by Robert Zachritz, Vice President,
Advocacy and Government Relations, World Vision US.]