    [Senate Hearing 117-]
    [From the U.S. Government Publishing Office]

      DEPARTMENT OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND
              RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2021

                                  ----------

                                           U.S. Senate,
               Subcommittee of the Committee on Appropriations,
                                                        Washington, DC.
        [Clerk's note.--The subcommittee was unable to hold
    hearings on departmental and nondepartmental witnesses. The
    statements and letters of those submitting written testimony
    are as follows:]

                             DEPARTMENTAL WITNESSES

      Prepared Statement of the America's Public Television Stations and
                        the Public Broadcasting Service
        On behalf of America's 159 public television licensees, we
    appreciate the opportunity to submit testimony for the record on the
    importance of Federal funding for local public television stations and
    PBS. We urge the Subcommittee to support $515 million in two-year
    advance funding for the Corporation for Public Broadcasting (CPB) in
    fiscal year 2023, $20 million for the Public Television Interconnection
    System in fiscal year 2021 and $30 million for the Ready To Learn
    program at the Department of Education in fiscal year 2021.
    Corporation for Public Broadcasting: $515 million (fiscal year 2023)
            two-year advance funded
        Public television plays a key role in educating our children;
    providing job training; preserving our culture and democracy; and
    keeping Americans informed, safe and healthy. Federal funding for CPB
    makes these services available to all Americans, including those in
    rural and underserved areas, and this funding enjoys the overwhelming
    support of the American people. At about $1.40 per person per year,
    this funding provides an enormous return on investment for all
    Americans.
        Yet these vital community-based services were level-funded at $445
    million for almost a decade--resulting in an approximate $100 million
    in lost purchasing power.
        Recognizing this loss, last year Congress increased the forward
    funded fiscal year 2022 appropriation for CPB by $20 million. Public
    television greatly appreciates that much-needed increase.
        While public broadcasting is grateful for this increase, without
    additional increase going forward, the public broadcasting system would
    still be nearly $80 million, in inflation-adjusted dollars, behind
    where the system was 10 years ago.
        Public broadcasting respectfully requests that Congress take
    another substantial step toward securing our current and future public
    service goals in the fiscal year 2021 appropriations process.
        The $515 million that public broadcasting is requesting in fiscal
    year 2021 for fiscal year 2023 will help continue to restore lost
    purchasing power and enable local stations to leverage advancements in
    technology and make investments in the future that will educate more
    children and adults, further enhance public safety and expand the civic
    leadership work of local stations.
        Given the success of public media, and its potential to do so much
    more for so many, it is sound public policy to increase Federal funding
    for this valuable service that provides an exceptional return on
    investment.
                                   education
        Perhaps now, more than ever as the nation faces unprecedented
    times, and families all across America are seeking ways to continue
    educating their children while isolated at home, the power of public
    media to serve as the nation's largest classroom has never been so
    important.
        Local stations have always served as the nation's largest
    classroom, meeting their communities' lifelong learning needs by
    providing the highest quality educational content and resources on
    multiple media platforms and in-person. That content is available to
    all Americans for free, delivered directly into their homes, no matter
    how they receive their television programming.
        Public television's educational broadcast content which has helped
    more than 90 million pre-school age children get ready to learn and
    succeed in school is also critical in keeping kids educated and engaged
    in learning while the majority of Americans are now homeschooling due
    to the COVID-19 pandemic.
        Beyond the iconic, proven educational programming, PBS, in
    partnership with local public television stations and school districts
    provides additional content directly to classrooms and homes through
    PBS Learning Media--which provides access to tens of thousands of State
    curriculum-aligned digital learning objects--including videos,
    interactives, lesson plans and more--for use in K-12 classrooms and at
    home. Content is sourced from the best of public television in addition
    to material from the Library of Congress, National Archives, NASA and
    other high-quality sources.
        Additionally, local public television stations throughout the
    country have partnered with PBS to bring a first-of-its kind, free PBS
    KIDS 24/7 channel and live stream to their communities--providing kids
    throughout the country with the highest level of educational
    programming, available through local stations any time, over-the-air
    and streaming. During the COVID-19 pandemic, many stations are using
    this expanded broadcast capacity to directly serve families and
    students from Pre-K-12 with state standards aligned educational
    content.
        Public television stations are also leaders in adult education.
    Public television operates the largest nonprofit GED program in the
    country, helping tens of thousands of second-chance learners earn their
    high school equivalency degree. In addition, public television stations
    are leaders in workforce development, including the retraining of
    American veterans by providing digital learning opportunities for
    training, licensing, continuing education credits and more.
                           partners in public safety
        Public broadcasting stations throughout the country are leading
    innovators and essential partners to local public safety officers. In
    partnership with FEMA, the public television interconnection system
    supports the Wireless Emergency Alert (WEA) system that enables cell
    subscribers to receive geo-targeted text messages in the event of an
    emergency--reaching citizens wherever they are. The February 2019
    Report from the FEMA National Advisory Council on Modernizing the
    Nation's Public Alert and Warning System specifically recommends,
    ``Encouraging use of public media broadcast capabilities to expand
    alert, warning, and interoperable communications capabilities to fill
    gaps in rural and underserved areas.''
        In addition, and separate from the WEA system, local public
    television stations' digital infrastructure and spectrum enable them to
    provide state and local officials with critical emergency alerts,
    public safety, first responder and homeland security services and
    information during emergencies through a process known as datacasting.
    Datacasting uses broadcast spectrum to send encrypted data and video to
    first responders with no bandwidth constraints.
        In partnership with local public television stations and local law
    enforcement agencies, the U.S. Department of Homeland Security (DHS)
    has conducted several successful pilots throughout the country that, in
    addition to other local initiatives, prove the effectiveness of
    datacasting in a range of uses cases including: flood warning and
    response; enhanced 911 responsiveness; over-water communications;
    faster early earthquake warnings; multiagency interoperability; rural
    search and rescue; high profile, large event crowd control; and
    assistance with school safety, including in areas that lack broadband
    or LTE services.
        As a result of the successful pilots, the DHS Science and
    Technology Directorate has partnered with America's Public Television
    Stations to maximize and promote datacasting technology and the
    opportunity to partner with local public television stations in
    communities nationwide.
        To support this nationwide effort, local public television stations
    have committed to reserve up to 1 megabit per second of their spectrum
    for the First Responder Network Authority (FirstNet).
        Additionally, stations are increasingly partnering with their local
    emergency responders to customize and utilize public television's
    infrastructure for public safety in a variety of critical ways, with
    many serving as their states' Emergency Alert Service (EAS) hub for
    weather and AMBER alerts.
                           providing civic leadership
        Public television strengthens the American democracy by providing
    citizens with access to the history, culture and civic affairs of their
    communities, their states and their country. As the nation grapples
    with the COVID-19 pandemic, public television is providing essential
    front-line coverage of the issue to arm citizens with the facts they
    need to stay healthy and information on where they can turn for help if
    they need it.
        For the 17th year in a row, PBS was ranked the most trusted among
    national institutions. That trust is more important than ever. At a
    time when inaccurate information could endanger people's lives,
    Americans can tune into their local public television station or view
    their online resources for trusted information that could help keep
    them safe.
        Local public television stations often serve as the state-level
    ``C-SPAN'' covering state government actions. Local stations also
    provide more public affairs programming, forums for discussion of local
    issues such as the opioid crisis, local history, arts and culture,
    candidate debates, agricultural news, and citizenship information of
    all kinds than anyone else. What truly sets public television stations
    apart is that stations treat their viewers as citizens rather than
    consumers.
                   public broadcasting is a smart investment
        All of this public service is made possible by the Federal funding
    to CPB. This Federal investment sustains the public service missions of
    public television, which are distinct from the mission of commercial
    broadcasting and will not be funded by private sources, as the
    Government Accountability Office concluded in a 2007 study commissioned
    by Congress.
        The need for Federal investment is particularly acute in small-town
    and rural America, where lower population density, a lack of corporate
    and philanthropic support, and challenging topography make the
    economics of local television and public service more challenging. As a
    result, public broadcasters are sometimes the only local broadcaster
    serving rural communities--and only with the help of the Federal
    investment.
        For all stations, Federal funding is the ``lifeblood'' of public
    broadcasting, providing indispensable seed money to stations to build
    additional support from state legislatures, foundations, corporations,
    and ``viewers like you.''
        For every dollar in Federal funding, local stations raise six
    dollars in non-Federal funding, creating a strong public-private
    partnership providing a valuable return on investment and supporting
    approximately 20,000 jobs across America.
        And yet, until last year, this critical funding remained flat for a
    decade, forcing stations to make difficult programming, staffing and
    service decisions as operational costs rose with inflation, while CPB
    funding did not. Despite this severe financial constraint, local public
    television stations have continued their deep commitments to the
    communities they serve. If CPB funding had kept up with the rate of
    inflation over the last 10 years, CPB would be funded at $543 in fiscal
    year 2023.
        The $515 million that public broadcasting is requesting in fiscal
    year 2023 is both prudent and necessary for the continued health of
    local stations and the public broadcasting system as a whole--and for
    long-delayed enhancements of the essential education, public safety and
    civic leadership services described above.
                            two-year advance funding
        Two-year advance funding is essential to the mission of public
    broadcasting. This longstanding practice, proposed by President Ford
    and embraced by Congress in 1976, establishes a firewall insulating
    programming decisions from political interference, enables the
    leveraging of funds to ensure a successful public-private partnership,
    and provides stations with the necessary lead time to plan in-depth
    programming and accompanying educational materials--all of which
    contribute to extraordinary levels of public service and public trust.
        Local stations leverage the two-year advance funding to raise
    state, local and private funds, ensuring the continuation of this
    strong public-private partnership. These Federal funds act as the seed
    money for fundraising efforts at every local station, no matter its
    size. Advance funding also benefits the partnership between states and
    stations since many states operate on two-year budget cycles.
        Finally, the two-year advance funding mechanism gives stations and
    producers, both local and national, the critical lead time needed to
    raise the additional funds necessary to sustain effective partnerships
    with local community organizations and engage them around high-quality
    programs. Producers like Ken Burns spend years developing programs like
    The Vietnam War and Country Music,. It would be impossible to produce
    this in-depth programming and the curriculum-aligned educational
    materials that accompany it without the two-year advance funding.
    Public Television Interconnection: $20 million
        The public television interconnection system is the infrastructure
    that connects PBS and national, regional and independent producers to
    local public television stations around the country. The
    interconnection system is essential to bringing public television's
    educational, cultural and civic programming to every American
    household, no matter how rural or remote. Without interconnection,
    there is no nation-wide public media service. The interconnection
    system is also critical for public safety, providing key redundancy for
    the communication of presidential alerts and warnings, and ensuring
    that cellular customers can receive geo-targeted emergency alerts and
    warnings.
        Congress has always provided Federal funding for periodic
    improvements of the interconnection system. In fiscal year 2018,
    Congress moved to fund interconnection for public broadcasting on an
    annual, rather than decennial, basis to enable dynamic, incremental
    upgrades in accord with increasingly rapid advances in technology.
    Public television seeks level funding of $20 million for
    interconnection in fiscal year 2021.
    Ready To Learn: $30 million (Department of Education)
        The U.S. Department of Education's Ready To Learn (RTL) competitive
    grant program, reauthorized in the Every Student Succeeds Act, uses the
    power of public television's on-air, online, mobile, and on-the-ground
    educational content to build the literacy and STEM skills of children
    between the ages of two and eight, especially those from low-income
    families.
        Through their RTL grant, CPB and PBS deliver evidence-based,
    innovative, high-quality transmedia content to improve the math and
    literacy skills of high-need children. CPB, PBS, and local stations
    have ensured that the kids and families that are most in need have
    access to these groundbreaking and proven effective educational
    resources. In addition to children, this outreach focuses on adults
    that care for kids to empower and help them understand the important
    role they play in their children's educational success.
        RTL investments have supported the production and academic rigor of
    PBS KIDS series: Molly of Denali, Peg + Cat, SuperWhy!, Martha Speaks,
    Odd Squad and other iconic programming for children.
        But this investment does not solely rely on trusted, educational
    children's programming. CPB, PBS, and local public television stations
    employ a national-local model to reach parents, teachers, and
    caregivers on-the-ground in communities to help them make the most of
    these media resources locally. These include television, online and
    mobile apps, digital technology, mobile learning labs and on the ground
    events that provide valuable content and support to local school
    districts, county non-profits, preschools, homeschools, Head Start and
    other daycare centers, libraries, museums, and Boys and Girls Clubs,
    among others.
                                    results
        RTL is rigorously tested and evaluated to assess its impact on
    children's learning and to ensure that the program continues to offer
    children the tools they need to succeed in school. Since 2005, more
    than 100 research and evaluation studies have shown RTL literacy and
    math content engages children, enhances their early learning skills and
    allows them to make significant academic gains, helping bridge the
    achievement gap. Highlights of recent studies show that:
      --Use of PBS KIDS content and games by low-income parents and their
            preschool children improves math learning and helps prepare
            children for entry into kindergarten.\1\
    ---------------------------------------------------------------------------
        \1\ PBS KIDS Mathematics Transmedia Suites in Preschool Homes: A
    Report to the CPB-PBS Ready To Learn Initiative (WestEd 2012).
    ---------------------------------------------------------------------------
      --Children who participated in the RTL Electric Company Summer
            Learning Program showed significant learning gains from pre- to
            post-assessment:
        --41 percent gain in their mathematics vocabulary
        --20 percent gain in their numeracy skills
        --17 percent gain in their phonics skills \2\
    ---------------------------------------------------------------------------
        \2\ Evaluation of The Electric Company Summer Learning Program
    (WestEd 2011).
    ---------------------------------------------------------------------------
      --Parents who used RTL math resources in the home became considerably
            more involved in supporting their children's learning
            outcomes.\3\
    ---------------------------------------------------------------------------
        \3\ Learning with PBS KIDS: A Study of Family Engagement and Early
    Mathematics
    Achievement (WestEd 2015).
    ---------------------------------------------------------------------------
                            an excellent investment
        In addition to being research-based and teacher tested, RTL also
    provides excellent value for our Federal dollars. In the last five-year
    grant round, public broadcasting leveraged an additional $50 million in
    non-Federal funding to augment the $73 million investment by the
    Department of Education. RTL exemplifies how the public-private
    partnership that is public broadcasting can change lives for the
    better.
        A funding level of $30 million is requested in fiscal year 2021 to
    further enhance the impact of Ready To Learn created content and the
    quantity and scope of local station outreach to the kids, families,
    teachers and schools that need it the most.
        Given the rigorous, thoughtful educational research and evaluation
    that goes into the creation of Ready To Learn content, Ready To Learn
    grants are awarded every 5 years and supported through annual
    appropriations. Funding in fiscal year 2021 would provide the second
    year of funding in the latest grant round. Providing $30 million for
    Ready To Learn in fiscal year 2021 will ensure that the next round of
    Ready To Learn grants can continue to create the highest quality,
    proven effective kids educational media content, meeting kids,
    caregivers and teachers where they are on a variety of platforms,
    including television, while expanding local, on-the-ground outreach
    through public television stations and their local partners.
                                   conclusion
        Americans across the political spectrum rely on and support Federal
    funding for public broadcasting because we provide essential local
    education, public safety, and civic leadership services that are not
    available anywhere else. And none of this would be possible without the
    Federal investment in public broadcasting.
        Federal funding is the great equalizer that ensures that the best
    of public broadcasting is available in both the urban centers of our
    great cities and in Native American communities in America's heartland
    and everywhere in between.
        Federal funding for CPB is what ensures that young children in
    Appalachia have the same access to the unparalleled PBS KIDS content as
    their counterparts in Los Angeles. And Federal funding is what ensures
    that all households, regardless of their ability to pay for cable have
    access to local programming and the best of NOVA, Masterpiece,
    NewsHour, Great Performances, and so much more.
        Public broadcasters are the only broadcasters that reach nearly 97
    percent of U.S. households, and it is CPB funding that makes this
    possible.
        For all of these reasons we request that Congress continue its
    commitment to the highly successful, hugely popular public-private
    partnership that is public broadcasting by providing $515 million in
    fiscal year 2023 for CPB in addition to $20 million in fiscal year 2021
    for public broadcasting's interconnection system and $30 million in
    fiscal year 2021 for the Ready To Learn Program.
                                     ______

         Prepared Statement of the Corporation for Public Broadcasting
        Chairman Blunt, Ranking Member Murray and distinguished members of
    the subcommittee, thank you for allowing me to submit this testimony on
    behalf of America's public media service-public television and public
    radio-on-air, online and serving communities throughout our country.
    The Corporation for Public Broadcasting (CPB) requests funding of $515
    million for fiscal year 2023, $20 million in fiscal year 2021 for the
    replacement of the public broadcasting interconnection system and other
    technologies and services, and $30 million for the Department of
    Education's Ready To Learn program.
        The Corporation provides leadership and stewards the Federal
    appropriation to ensure a healthy and sustainable public media system.
    With CPB funding to 1,500 local public television and radio stations
    across the country, the Federal appropriation guarantees that important
    educational content and services, news and public affairs programming,
    and cultural treasures reach Americans living in rural, small town and
    urban communities. Stations leverage the appropriation, raising, on
    average, six times more from non-Federal funding sources than they
    receive from CPB. While private funding and donations can and do make
    up a significant portion of the finances of the public media system,
    the Federal appropriation remains an essential part of the public-
    private partnership for public media. This seed money pays invaluable
    dividends to millions of Americans and their families, especially the
    unserved and underserved. Only through Congressional funding can public
    media maintain this universal access.
        In order to meet the educational needs of young people, public
    media provides award winning high-quality educational content on all
    platforms. Through the Department of Education's Ready to Learn grant,
    public television is preparing our youngest learners for school,
    especially those in underserved communities, by delivering proven
    educational resources and experiences to parents, teachers and
    caregivers. While today's media environment offers abundant content
    aimed at children, no other outlet provides safe, trusted, educational
    content that is free of charge and commercial-free. The Federal
    appropriation to CPB ensures that our children will continue to have
    access to public media's content over the air, online, through mobile
    apps and in their community.
        Federal support through CPB helps local public media stations
    provide new services that excite and engage students, teachers and
    parents. For example, the Mobile Virtual Reality Lab (MVRL) at Georgia
    Public Broadcasting utilizes virtual reality headsets to immerse
    students in educational experiences. Through the MVRL, students are
    transported to key moments in the Civil Rights Movement and can also
    explore prehistoric cultures of Native American tribes.
        Further to ensure that young people can access content of value to
    their lives, CPB is helping launch TRAX, a new public media network of
    original podcasts for ages 9 to 13 years old. Beginning this year, TRAX
    will offer on-demand audio content that is educational and
    entertaining, and diverse in genre, format and voice. In addition, CPB
    is funding research at the Joan Ganz Cooney Center to explore new ways
    public media can connect trusted, educational content to children ages
    8 to 18. As learning becomes more personalized, Congress' support is
    needed to continue to research, develop and test how educational media
    and technology can improve students' learning outcomes.
        Through public media initiatives such as American Graduate,
    stations provide high-quality educational content and community
    engagement that helps Americans prepare for success in school and
    career. Nine years ago, public media addressed the high school dropout
    crisis-one million students failing to graduate each year. Through
    national and local content, award-winning documentaries, reporting and
    town halls, the American Graduate initiative drove dialogue and put a
    face on a statistic. As a result of the steadfast commitment of
    initiatives such as American Graduate, the national graduation rate has
    risen to an unprecedented 84.6 percent. Further, research shows that in
    88 percent of those communities where American Graduate was active,
    schools experienced an almost 10 percent increase in their graduation
    rates-compared with the national average of 5.5 percent. Moreover,
    recent government statistics showed that for the first time, black
    students' graduation rates are on par with white youth. While we are
    proud of this success, there is still work to be done.
        Building on American Graduate's success, CPB expanded the
    initiative to focus on connecting young people to essential workforce
    skills and career opportunities. For example, Connecticut Public
    Broadcasting facilitated a town hall where businesses shared what
    success looks like for those who enter high-demand, skilled careers and
    broke down multiple negative perceptions with data and storytelling.
    With CPB support, Kentucky Educational Television (KET) created
    Workplace Essential Skills--an online instructional system utilizing
    videos, interactive learning tools and quizzes to guide learners
    through the job application process and workplace environment. KET has
    launched online certification courses in healthcare, manufacturing,
    transportation/logistics, and in construction and information
    technology. American Graduate is helping Americans improve their
    everyday lives and rise to meet the challenges of tomorrow.
        CPB seeks to increase the capacity of public radio and television
    stations to create high-quality original and enterprise journalism by
    supporting collaborations between public media stations. As local
    journalism diminishes, public media stations have added more than 700
    journalists to their staffs during the past 6 years. Local reporting
    and community-led conversations on issues such as aging and mental
    health provide resources and answers for those affected. With the
    global outbreak of COVID-19 and the need for community information,
    South Florida PBS is providing public television stations across the
    country with health reports from medical experts, and is making
    available a dedicated website that tracks the virus' spread and offers
    information about treatment and prevention. KUOW-FM in Seattle is
    providing live updates about the coronavirus online and on air and is
    explaining who is most at risk for severe illness, as well as where
    COVID-19 tests are available and its impact on businesses.
        Further, CPB's investments in editorial integrity and regional
    journalism collaborations allow public media to retain the trust of the
    American people and deliver relevant news and information to local
    communities and regions. Nationally, programs such as FRONTLINE, PBS
    NewsHour, NOVA and All Things Considered examine critical issues facing
    our society, providing trusted content to Americans striving to learn
    more about our ever-changing world.
        CPB supports initiatives that increase understanding of our shared
    American experience by capturing and elevating the stories of everyday
    people from differing backgrounds and viewpoints. CPB's Coming Home:
    Connecting to Community celebrates the people, culture, and stories of
    rural America through authentic local voices and talent. Working with
    local partners, public media can uniquely preserve community stories
    about traditions, aspirations, struggles and what it means to be an
    American. CPB is also proud to support StoryCorps, including its
    Military Voices Initiative, which records the stories of military
    service members and their families to honor and better understand their
    sacrifice.
        Committed to building a pipeline of diverse talent, CPB funds the
    National Multicultural Alliance, Firelight Media's Documentary Lab, the
    Jacquie Jones Memorial Scholarship, the Werk It Podcast Festival, and
    WXXI-Rochester's Move to Include initiative. Each of these efforts
    increases the numbers of diverse storytellers, ensuring our nation's
    public media service reflects the faces and voices of Americans.
        Interconnection Infrastructure: Interconnection is the backbone of
    the public media system, delivering content every day from public media
    producers to public television and radio stations in communities
    throughout the country. Without it, there is no nationwide public media
    service. Recognizing its importance, Congress has funded public media's
    interconnection system since fiscal year 1991 through a separate,
    periodic appropriation for interconnection. Currently, CPB is investing
    in new technologies and organizational change to ensure that the public
    media system continues to provide essential services in the 21st-
    century. For public media consumers, this will mean increased
    accessibility and personalization across all public media digital
    platforms and increased efficiencies for public media stations through
    unified radio and television content management systems. These
    efficiencies and technological improvements will advance the entire
    system and benefit the American people.
        CPB's fiscal year 2023 request of $515 million and fiscal year 2021
    requests of $20 million and $30 million for interconnection and Ready
    To Learn, respectively, provides essential support to stations--
    particularly those serving rural, minority and other underserved
    communities--and enables innovation and technological advances. We know
    that Americans value their local public media stations. With your
    support, CPB will continue to serve as a trusted steward of the Federal
    appropriation and invest these taxpayer dollars in ways that connect to
    Americans' daily lives and our shared future. Mr. Chairman and members
    of the subcommittee, thank you for allowing me, on behalf of America's
    public media, to submit this testimony. I appreciate your consideration
    of our funding request.

        [This statement was submitted by Patricia de Stacy Harrison,
    President and CEO, Corporation for Public Broadcasting
                                     ______

              Prepared Statement of the Railroad Retirement Board
        Mr. Chairman and Members of the Committee:
        The President's fiscal year 2021 proposed budget for the Railroad
    Retirement Board (RRB) is $120.225 million. The RRB is requesting
    $155.824 million. Appropriations for RRB operations are derived from
    the railroad retirement trust funds and not the general revenue fund.
    Appropriations language \1\ authorizes the RRB to access available
    funding from its trust funds, in contrast to monies that would
    otherwise be appropriated from the general revenue fund, to administer
    comprehensive retirement/survivor and unemployment/sickness insurance
    benefit programs for railroad workers and their families under the
    Railroad Retirement (RRA) and Railroad Unemployment Insurance (RUIA)
    Acts. The RRB also administers certain benefit payments and Medicare
    coverage for railroad workers under the Social Security Act.
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        \1\ ``Such amounts as determined by the Board from the railroad
    retirement accounts and from moneys credited to the railroad
    unemployment insurance administration fund.'' Further Consolidated
    Appropriations Act, 2020, Public Law 116-94, Div. A, Title IV (December
    20, 2019).
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        During fiscal year 2019, the RRB paid benefits totaling $13.3
    billion, net of recoveries and offsetting collections. Of this amount,
    payments for the retirement/survivor benefits program totaled $13.1
    billion to about 535,000 beneficiaries. The RRB also paid unemployment-
    sickness benefits of $93.2 million. About 9,300 railroad workers
    received unemployment insurance benefits, and approximately 14,700
    received sickness insurance benefits. Finally, RRB paid vested dual
    benefits of $17.3 million to about 9,000 beneficiaries. On behalf of
    the Social Security Administration, the RRB paid benefits of $1.9
    billion to about 125,500 beneficiaries (for which the RRB is
    reimbursed).
        The railroad employer and employee contributions are held in trust
    funds to pay railroad benefits and support RRB operations. As
    previously stated, enacted appropriation language authorizes the RRB to
    access the funds available in the railroad retirement trust fund system
    in order to finance operations. The Association of American Railroads
    and the Rail Labor Division of the Transportation Trades Department,
    American Federation of Labor and Congress of Industrial Organizations
    (AFL-CIO) continue to support increased appropriations to address the
    urgent staffing needs and ongoing information technology modernization
    activities.
              president's proposed funding for rrb administration
        The President's proposed budget would provide $120.225 million for
    RRB operations, to include IT initiatives, and support 672 full-time
    equivalents (FTEs). The RRB requests $155.824 million, which is $35.599
    million above the President's proposed budget. Of the $155.824 million
    RRB requests, $141.974 million is necessary to support 880 FTEs and
    $13.850 million in no-year funds to continue IT modernization efforts.
    For the reasons explained below, the FTE level of 672 proposed in the
    President's budget would pose too great a risk of failure to meet the
    agency's mission as early as fiscal year 2021.
        The RRB is asking for funding from the railroad retirement trust
    fund system, not the general revenue fund, sufficient to support 880
    FTEs, which is the number that is urgently needed to sustain mission
    critical activities. The remainder of this testimony will focus on
    these critical priorities and conclude with an overview of the
    financial status of the trust funds.
                          critical priority: staffing
        Since fiscal year 2017, the RRB has been appropriated $113.5
    million for personnel and general operating costs to support benefits
    administration, exclusive of funding for IT modernization despite
    successive years of unfunded Cost of Living Adjustment (COLA) increases
    in salary and associated benefits. The COLAs the RRB had to fund with
    its stagnant budget include $1.388 million in 2017, $1.389 million in
    2018, $1.364 million in 2019, and $2.066 million in 2020. Consequently,
    the RRB has strained to absorb the impact of increases in civilian pay
    and benefits costs. Roughly, 36 percent of the agency's most
    knowledgeable and experienced staff will be eligible to retire by
    fiscal year 2022. In fiscal year 2020, approximately 25 percent of its
    workforce is eligible to retire. Unfortunately, these seasoned
    employees are not easily replaced due to the complexity of RRB programs
    and the tendency of new hires to seek higher paying work outside the
    agency. Insufficient staffing levels have thus forced the RRB to focus
    its limited resources on processing initial claim and related payments
    timely. To date, these are the most visible performance metrics and
    generally, with the exception of disability payments, RRB has been
    successful in this regard. Sustained low staffing levels have
    nevertheless reduced RRB's performance in less visible ways: inadequate
    staffing levels have created backlogs of post adjudicative actions that
    serve to ensure ongoing disability or retirement/survivor benefit
    payments are accurate. Inadequate staffing has also impaired the RRB's
    core training program, which ensures that new employees obtain an in-
    depth understanding of the RRA and/or RUIA for effective and efficient
    benefits administration. It can take one to 2 years for new staff to
    become competent adjudicators and even longer for new staff to resolve
    more complex and non-routine administrative issues. On the other hand,
    RRB customer service metrics associated with deficient staffing levels
    in the RRB's 53 field offices have sharply declined due to poor
    customer service availability, unacceptable wait times for telephone
    assistance and unpredictable temporary office closures. Representatives
    of both rail management and rail labor have shared negative feedback
    about and examples of RRB's poor customer service in recent months.
        Therefore, the RRB requests $141.974 million to support 880 FTEs.
    Investment in additional staff would help the RRB revitalize its
    benefits administration training program, allowing the RRB to better
    manage the impact of attrition and improve customer service
    capabilities. After the new staff have been trained, the RRB would
    begin to realize reductions in the backlog in retirement, survivor, and
    disability casework and prevent future case build up. Increased
    staffing levels are necessary until the modernized technology and
    streamlined business processes can sustain organizational performance
    at lower staffing levels in the future.
                   critical priority: information technology
        We are grateful for the support and $30 million provided thus far
    for the RRB's IT modernization efforts. Several of the seven
    initiatives identified early in this modernization journey afforded two
    major lessons learned. To start with, the RRB's IT Modernization
    Program focused narrowly on seven initiatives and did not capture
    significant outdated portions of the enterprise IT environment.
    Secondly, while IT modernization is still the priority, we will
    leverage the opportunity to transform core business processes and
    customer service capabilities, simultaneously. As such, RRB's IT
    modernization program has evolved into a Transformation that consists
    of three phases--Stabilize, Modernize, and Perform. From an IT
    perspective, this Transformation will still target the 70+ legacy
    applications and transition its platforms to support continuous
    delivery of capability enhancements securely and reliably. From a
    business perspective, the Transformation will ensure that core process
    modernizations span the continuum, to include streamlining the RRB's
    core training program for claim examiners as well as infusing greater
    flexibility and efficiency into benefit calculations and/or
    adjustments.
        The progress of the RRB's IT modernization activities is detailed
    in the quarterly reports submitted to your office. The RRB requests
    $13.850 million of no-year funding for ongoing modernization efforts,
    shifting from the Stabilize to the Modernize phase of the
    Transformation.
                      financial status of the trust funds
        Railroad Retirement Accounts.--The RRB continues to coordinate its
    activities with the National Railroad Retirement Investment Trust
    (Trust), which was established by the Railroad Retirement and
    Survivors' Improvement Act of 2001 (RRSIA) to manage and invest
    railroad retirement assets for the payment of benefits. The net asset
    value of Trust-managed assets on September 30, 2019, was $25.4 billion,
    a decrease of almost $1.2 billion from the previous year.
        The RRB's latest report required by the Railroad Retirement Act of
    1974 and Railroad Retirement Solvency Act of 1983 was released in June
    2018. The overall conclusion was, barring a sudden, unanticipated,
    large drop in railroad employment or substantial investment losses, the
    railroad retirement system will experience no cash flow problems during
    the next 29 years. The report recommended no change in the employer or
    employee tax rates.
        Railroad Unemployment Insurance Account.--The RRB's latest annual
    report required by Section 7105 of the Technical and Miscellaneous
    Revenue Act of 1988 was issued in June 2019. The report indicated that
    even as maximum daily benefit rates are projected to rise approximately
    44 percent (from $77 to $111) from 2018 to 2029, experience-based
    contribution rates are expected to keep the unemployment insurance
    system solvent. No financing changes were recommended at this time by
    the report.
        Thank you for your consideration of our budget request.

        [This statement was submitted by Erhard R. Chorle, Chairman, John
    Bragg, Labor Member, and Thomas Jayne, Management Member, Railroad
    Retirement Board.]
                                     ______

                           NONDEPARTMENTAL WITNESSES

               Prepared Statement of the Academy for Radiology &
                          Biomedical Imaging Research
        Mr. Chairman and Members of the Subcommittee, my name is Dr.
    Mitchell Schnall, and I am privileged to serve as President of the
    Academy for Radiology & Biomedical Imaging Research (``the Academy'').
    I am testifying today to thank you for your dedicated support of
    medical imaging, and to request your support for raising the funding
    for the National Institutes of Health (NIH) to no less than $44.7
    billion and increasing the funding for the National Institute of
    Biomedical Imaging and Bioengineering (NIBIB) to no less than $428.6
    million.
        In my ``day job'' I am Eugene P. Pendergrass Professor and Chair of
    the Department of Radiology at the Perelman School of Medicine at the
    University of Pennsylvania, Philadelphia, PA. I am also a member of the
    American Society of Clinical Investigation and the Association of
    American Physicians. Throughout my career, I have worked on the
    interface between basic imaging science and clinical medicine. My work
    has led to fundamental changes in imaging approaches to breast and
    prostate cancer, as well to emerging technologies such as optical
    imaging.
        On behalf of the Academy, I would like to begin by thanking you for
    your generous support for the NIH in the fiscal year 2020 LHHS
    appropriations bill. The increase in funding of $2.6 billion is
    critical to the important work of improving our biomedical research
    infrastructure while also ensuring that the United States remains the
    leader in medical innovation and technology.
        As this subcommittee knows well, funding for NIH is spread
    throughout the country. Approximately 83 percent of the amount
    appropriated for NIH budget is used for peer-reviewed extramural grants
    to researchers at universities, hospitals, and institutes in all 50
    states. Approximately 10 percent funds very high-end research and
    patient care on the NIH campus. Only about 7 percent of funding is used
    for administrative purposes, maximizing the return on the investment.
        Nowhere is the return on investment and impact on healthcare
    diagnosis and treatment more significant than in the growing field of
    biomedical imaging and bioengineering.
        Our requests of this Subcommittee are critically important to the
    physical and economic health of the nation, and I would like to state
    them clearly here:
      --Please fund the NIH at no less than $44.7 billion for fiscal year
            2021.
      --Please fund NIBIB at no less than $428.6 million for fiscal year
            2021.
        Mr. Chairman, medical imaging plays a unique and substantial role
    in healthcare, both as an instrumental part of the medical care
    delivery system and as a catalyst for innovation and technological
    advancement in service of patient care. Imaging performs increasingly
    central and irreplaceable roles in early disease detection, diagnosis,
    treatment planning and monitoring. Precise and personalized care and
    treatment plans are often developed based on decisions made through
    imaging analysis and review. The Subcommittee's investment in NIH
    broadly, and in NIBIB in particular, helps make this possible.
        NIBIB's imaging and bioengineering research and development create
    the vital methodology and tools utilized in so many areas of biomedical
    research by other institutes, and more generally in America's
    healthcare delivery system. Imaging and bioengineering research is a
    significant component of the work of many institutes of the NIH,
    representing 13 percent of all NIH research, while having a budget that
    is less than 1 percent of the total NIH budget. It is important to note
    that NIBIB research itself has led to an impressive number of approved
    patents. In a study covering the 14-year period from 2000 to 2013,
    \*\Battelle et al. found that for every $100 million of research
    funding, NIBIB generated 25 patents and more than $575 million in
    resulting economic activity and growth.
    ---------------------------------------------------------------------------
        \*\ Report available at: https://www.acadrad.org/battelle-report/.
    ---------------------------------------------------------------------------
        For nearly every patient--nearly every constituent--who receives a
    cancer diagnosis, suffers a head injury, or experiences any of
    thousands of other medical issues, or who cares for family members
    experiencing such difficulties, the health benefits of imaging and
    bioengineering research are profoundly felt. Few medical conditions do
    not already benefit from any of the wide range of clinical imaging
    modalities, from x-rays to MRI, CT, PET, fluoroscopy, angiography, and
    ultrasound. Furthermore, scientific discoveries and technological
    innovations are rapidly expanding the power of biomedical imaging and
    bioengineering to improve medical care.
        In the area of cancer, for example, emerging techniques for
    molecular imaging will play a key role in realizing the dream of
    molecularly-targeted treatment. Unlike biopsies, they can give a non-
    invasive picture of the biological heterogeneity of cancer within and
    across all tumors in a patient. Progress is accelerating rapidly in the
    use of computer tools, including artificial intelligence (AI) and
    machine learning (ML). Such tools are utilized to analyze both
    anatomical and molecular images and identify mathematically defined
    features not perceptible to the human eye. These tools can predict the
    presence of cancer, its genetic profile, and how well it is likely to
    respond to specific treatments. The use of increasingly advanced
    imaging tools to guide medical interventions is allowing more precise,
    less invasive procedures, in some cases with immediate assessment of
    efficacy to enable necessary adjustments before a procedure is
    concluded. Exploratory surgery is now far less common due to these new
    advancements.
        The Academy is involved in a broad effort to help maximize the
    efficiency with which medical imaging is applied in research and
    patient care. Since 2017, when the Interagency Working Group on Medical
    Imaging (IWGMI) within the White House Office of Science Technology
    Policy (OSTP) released its Roadmap report, the Academy has been working
    to advance the report's four key objectives for ``high-value'' imaging:
      --Standardizing image acquisition and storage;
      --Applying advanced computation and machine learning to medical
            imaging;
      --Accelerating the development and translation of new, high-value
            imaging techniques; and
      --Promoting best practices in medical imaging.
        The Academy is working closely across academia, government, and
    industry to identify and pursue specific, effective steps to implement
    the building of the Diagnostic Cockpit (DxCP), as envisioned by IWGMI.
    The DxCP initiative will empower precision medicine by bringing
    together the latest diagnostic sensor technology with advanced AI-based
    computing to match patients to the best treatments. The Academy has
    convened leaders in biomedical imaging and bioengineering from
    academia, government, and industry to work collaboratively on this
    initiative toward the development of tools that will leverage advances
    in AI and ML to aggregate and synthesize medical data to improve
    patient care. The DxCP is a vision for today and for the future that
    will be made possible by a consistent and robust investment in
    biomedical imaging research. The sooner we invest, the sooner your
    constituents benefit.
        Mr. Chairman, innovation is what keeps America healthy--both
    physically and economically--and the NIH is a major contributor to our
    strength. Since its creation, NIBIB has proven to have a significant
    impact by creating the imaging and bioengineering tools that improve
    the healthcare of Americans and contribute to our nation's economic
    vitality and global leadership.
        Thank you again for the opportunity to present this testimony to
    you on behalf of the Academy for Radiology & Biomedical Imaging
    Research. The Academy welcomes the opportunity to work with the
    Congress to ensure that the American people benefit from their
    investment in research and have access to the best technology to
    address their imaging needs.

        [This statement was submitted by Mitchell D. Schnall, M.D., Ph.D.,
    Academy for Radiology & Biomedical Imaging Research.]
                                     ______

          Prepared Statement of the Academy of Nutrition and Dietetics
        The Academy of Nutrition and Dietetics appreciates the opportunity
    to submit outside witness testimony to the Senate Subcommittee on
    Labor, Health and Human Services, and Education, and Related Agencies.
    The Academy is the world's largest organization of food and nutrition
    professionals and is committed to improving the nation's health with
    nutrition services and interventions provided by registered dietitian
    nutritionists. Nationwide, the Academy represents over 107,000
    registered dietitian nutritionists (RDNs), nutrition and dietetic
    technicians, registered (NDTRs), and advanced-degree nutritionists.
        For fiscal year 2021, we strongly urge you to provide robust
    funding for Older Americans Act nutrition programs, which are on the
    front lines of preventing senior hunger and malnutrition and promoting
    social distancing during the COVID-19 crisis; the CDC Division of
    Nutrition, Physical Activity, and Obesity; and the National Institute
    of Diabetes, Digestive, and Kidney Diseases. We also request report
    language related to obesity treatment within Medicare.
              funding: acl older americans act nutrition programs
        The Older Americans Act authorizes a wide array of service programs
    through a national network of 56 state agencies on aging, 629 area
    agencies on aging, nearly 20,000 service providers, 244 Tribal
    organizations, and 2 Native Hawaiian organizations representing 400
    Tribes.\1\ These programs are overseen by the HHS Administration for
    Community Living. Most participants have household incomes below 100
    percent of the Federal poverty level.\2\
    ---------------------------------------------------------------------------
        \1\ https://acl.gov/about-acl/authorizing-statutes/older-americans-
    act.
        \2\ https://fas.org/sgp/crs/misc/IF10633.pdf.
    ---------------------------------------------------------------------------
        During the COVID-19 crisis, service providers stopped providing
    congregate meals and shifted those services to grab-and-go and home-
    delivered meals to promote social distancing and prevent the spread of
    the virus among this very vulnerable population. In addition to
    continuing to combat senior hunger in this time of uncertainty, senior
    meals programs also help reduce the need for seniors to leave their
    homes to get food, further helping to limit their potential exposure to
    COVID-19.
                         congregate nutrition services
    Academy's Fiscal Year 2021 Request: $562 million--Fiscal Year 2020
            Enacted Level: $510 million
        Congregate Nutrition Services funds nearly 80 million meals per
    year for 1.5 million participants and gives seniors access to
    socialization. More than one-fifth of participants have been deemed to
    be at high nutrition risk. These funds are also used to provide
    nutrition screening and counseling to seniors who may be at risk of
    malnutrition, food insecurity, or other related issues.
        A national survey of OAA participants shows that in 2017, 48
    percent of congregate nutrition survey respondents were aged 75 and
    older; 47 percent lived alone; 11 percent had annual income of $10,000
    or less; and 51 percent reported that the congregate meals program
    provided one-half or more of their daily food intake.\3\ Furthermore,
    many congregate nutrition participants reported these meals have
    fostered greater socialization, with 83 percent saying that they saw
    friends more often due to meals.
    ---------------------------------------------------------------------------
        \3\ https://fas.org/sgp/crs/misc/IF10633.pdf.
    ---------------------------------------------------------------------------
                       home-delivered nutrition services
    Academy's Fiscal Year 2021 Request: $285 million--Fiscal Year 2020
            Enacted Level: $266 million
        Home-Delivered Nutrition Services provides more than 140 million
    meals per year to 850,000 participants and serves as a safety check for
    isolated residents.\3\ More than one-half of participants have been
    deemed to be at high nutrition risk. The program is also a primary
    access point for other home- and community-based services for many
    seniors. An ACL evaluation found that, compared to congregate meal
    participants, a larger proportion of home-delivered meal participants
    reported being in fair or poor health, being underweight, having
    difficulty eating due to dental issues, and taking multiple
    medications. For many seniors, Home-Delivered Nutrition Services are
    their only consistent, dependable source of food.
        A national survey of OAA participants shows that in 2017, 62
    percent of home-delivered respondents were aged 75 and older; 58
    percent lived alone; 23 percent had annual income of $10,000 or less;
    and 57 percent said that the home-delivered meals program provided at
    least one-half of their daily food intake.\3\ According to the survey,
    home-delivered meals participants tend to be particularly frail and at
    risk for institutionalization, in part due to the requirement that
    participants be home-bound. Almost 4 out of 10 recipients (39 percent)
    reported needing assistance with one or more activities of daily living
    (ADLs); 14 percent of these recipients needed assistance with three or
    more ADLs. In addition, 84 percent reported needing assistance with one
    or more ADLs.
                      nutrition services incentive program
    Academy's Fiscal Year 2021 Request: $181 million--Fiscal Year 2020
            Enacted Level: $160 million
        The Nutrition Services Incentive Program provides incentives for
    providers to serve additional meals through cash and/or commodities
    grants. Prior to the CIOVID-19 pandemic, more local service providers
    were reporting waiting lists for home-delivered meals than in previous
    years.\3\ As food insecurity increases across the country in the wake
    of the COVID-19 pandemic, this incentive program is a key means to
    reducing waiting lists for senior meals programs.
                disease prevention and health promotion services
    Academy's Fiscal Year 2021 Request: $28 million--Fiscal Year 2020
            Enacted Level: $25 million
        Disease Prevention and Health Promotion Services funds evidence-
    based prevention programs to improve health and reduce disease and
    injury among older adults.\4\ The program provides grants to states and
    territories based on their share of the population aged 60 and older
    for programs that support healthy lifestyles. Common program types
    include class-based physical activity programs, falls prevention
    programs, self-management programs, and one-on-one health interventions
    within the home. Evidence-based disease prevention and health promotion
    programs can reduce the need for more costly medical interventions.
    ---------------------------------------------------------------------------
        \4\ https://acl.gov/programs/health-wellness/disease-prevention.
    ---------------------------------------------------------------------------
       funding: cdc division of nutrition, physical activity and obesity
    Academy's Fiscal Year 2021 Request: $125 million--Fiscal Year 2020
            Enacted Level: $56.9 million
        The CDC Division of Nutrition, Physical Activity, and Obesity
    (DNPAO) oversees grant programs that provide funds to states and
    localities to address the obesity epidemic in their communities.\5\
    According to the CDC, the prevalence of obesity was 42.4 percent in
    2017-2018.\6\ Obesity-related conditions include heart disease, stroke,
    type 2 diabetes and certain types of cancer that are some of the
    leading causes of preventable, premature death. In 2008, the annual
    medical cost of obesity in the United States was estimated to be $147
    billion; the medical cost for people who have obesity was $1,429 higher
    than those of normal weight.
    ---------------------------------------------------------------------------
        \5\ https://www.cdc.gov/nccdphp/dnpao/state-local-programs/
    funding.html.
        \6\ https://www.cdc.gov/obesity/data/adult.html.
    ---------------------------------------------------------------------------
                 state physical activity and nutrition program
    Academy's Fiscal Year 2021 Request: $60 million--Fiscal Year 2020
            Enacted Level: $15 million
        One of the programs run out of DNPAO is the State Physical Activity
    and Nutrition (SPAN) grant program, which awards competitive grants to
    states to implement multi-component, evidence-based strategies at the
    state and local level to improve nutrition and physical activity.\7\
    With its current funding level, SPAN is only able to fund 16 states,
    which is does via 5-year grants (currently fiscal year 2018-2022).
    DNPAO estimates that it would cost an additional $1.2 million per state
    to expand the program, so we are requesting $60 million in total
    funding to allow every state to receive funding through SPAN.
    ---------------------------------------------------------------------------
        \7\ https://www.cdc.gov/nccdphp/dnpao/state-local-programs/span-
    1807/index.html.
    ---------------------------------------------------------------------------
     funding: national institute of diabetes, digestive and kidney diseases
    Academy's Fiscal Year 2021 Request: $2.2 billion--Fiscal Year 2020
            Enacted Level: $2.1 billion
        The National Institute of Diabetes, Digestive, and Kidney Diseases
    (NIDDK) conducts and provides grant funding to support research on many
    of the most common and costly chronic diseases. Key areas of focus
    include diabetes, digestive diseases such as Celiac, kidney disease,
    weight management, and more. This research advances clinical knowledge
    about and treatment for these diseases. The $2.2 billion request would
    help NIDDK to accelerate scientific understanding of some of the
    costliest and most common chronic conditions in America:
      --30.3 million people have diabetes (9.4 percent of the U.S.
            population).\8\
    ---------------------------------------------------------------------------
        \8\ https://www.cdc.gov/diabetes/pdfs/data/statistics/national-
    diabetes-statistics-report.pdf.
    ---------------------------------------------------------------------------
      --14.5 percent of adults over age 65 have chronic kidney disease and
            more than 740,000 Americans have kidney failure.\9\
    ---------------------------------------------------------------------------
        \9\ https://www.usrds.org/2019/view/USRDS_2019_ES_final.pdf.
    ---------------------------------------------------------------------------
      --4.5 million adults have diagnosed liver disease (1.8 percent of
            adult population).\10\
    ---------------------------------------------------------------------------
        \10\ https://www.cdc.gov/nchs/fastats/liver-disease.htm.
    ---------------------------------------------------------------------------
      --60 to 70 million people are affected by all digestive diseases
            within the United States.\11\
    ---------------------------------------------------------------------------
        \11\ https://www.niddk.nih.gov/health-information/health-
    statistics/digestive-diseases.
    ---------------------------------------------------------------------------
                 report language: obesity treatment in medicare
        We ask that you include report language that encourages CMS to
    exercise their existing authority to provide full access to anti-
    obesity medications under Medicare Part D and intensive behavioral
    therapy for obesity under Medicare Part B. The language requested below
    reflects the major provisions of the Treat and Reduce Obesity Act
    (H.R.1530/S.595).
        Obesity is a chronic disease and a public health crisis that
    continues to strain the economy and health outcomes. According to the
    Centers for Disease Control and Prevention, about 41 percent of adults
    aged 60 and over had obesity in the period of 2015 through 2016,
    representing more than 27 million people. The National Institutes of
    Health has reported that obesity and overweight are now the second
    leading cause of death nationally, with an estimated 300,000 deaths a
    year attributed to the epidemic. Obesity increases the risk for chronic
    diseases and conditions, including high blood pressure, heart disease,
    certain cancers, nonalcoholic steatohepatitis (NASH), arthritis, mental
    illness, lipid disorders, sleep apnea and type 2 diabetes.
        To help address the high costs of comorbidities associated with the
    chronic disease of obesity and to promote access to treatment of the
    disease of obesity and chronic weight management, the Committee
    encourages CMS to provide access to the full continuum of care with
    obesity, including to anti-obesity medications under Medicare Part D
    consistent with CMS's approach to pharmacotherapy agents used for
    weight gain to treat AIDS wasting and cachexia.
        The Committee also encourages CMS to update its Medicare Part B
    national coverage determination for intensive behavioral therapy (IBT)
    for obesity to be consistent with current United States Preventive
    Services Task Force recommendations that IBT for obesity can be
    provided, through referral, outside of the primary care setting and by
    a broader range of qualified providers than are currently permitted to
    bill under Part B for this service.
        Recent research shows that obesity is the second greatest risk
    factor, after older age, for hospitalization among COVID-19 patients.
    For these reasons, the Centers for Disease Control and Prevention now
    state that older people and younger adults with serious medical
    conditions, such as obesity, heart disease, diabetes, lung disease and
    asthma have a greater risk of becoming severely ill if they are
    infected with the SARS-CoV-2 virus.
        This crisis has also magnified the health disparities experienced
    by minority communities. Minority populations have long faced chronic
    disease health disparities due to socioeconomic inequalities and
    reduced access to healthcare, healthy foods and safe places to be
    active. It is these same groups that are now disproportionately
    impacted by COVID-19. We encourage you to help reduce this important
    driver of COVID-19 morbidity, mortality, and related disparities by
    using report language to encourage CMS to offer full access to
    evidence-based obesity treatments within Medicare.
    Contact
        Please feel free to contact me at hmartin@eatright.org with any
    questions. Thank you for the opportunity to submit testimony to the
    Subcommittee.

        [This statement was prepared by Hannah Martin, MPH, RDN, Director,
    Legislative and Government Affairs, Academy of Nutrition and
    Dietetics.]
                                     ______

                     Prepared Statement of the Ad Hoc Group
        The Ad Hoc Group for Medical Research is a coalition of more than
    330 patient and voluntary health groups, medical and scientific
    societies, academic and research organizations, and industry. We
    appreciate the opportunity to submit this statement in support of
    strengthening the Federal investment in biomedical, behavioral, social,
    and population-based research conducted and supported by the National
    Institutes of Health (NIH) through a recommendation of $44.7 billion
    for NIH in fiscal year 2021.
        As a result of the strong, bipartisan vision of Senate and House
    Labor-HHS-Education Appropriations Subcommittees over the last 5 years,
    Congress has helped the agency regain some of the ground lost after
    years of effectively flat budgets. This renewed investment in NIH has
    advanced discovery toward promising therapies and diagnostics,
    reenergized existing and aspiring scientists nationwide, and restored
    hope for patients and their families.
        We are also grateful for the recent bipartisan agreements to
    provide supplemental appropriations for NIH and other key health
    programs as the healthcare and research community responds to the
    ongoing coronavirus pandemic. To maximize our country's ability to
    develop countermeasures against COVID-19 and sustain the research
    momentum across all NIH research, the Ad Hoc Group recommends $44.7
    billion for the NIH in fiscal year 2021, a $3 billion increase over the
    NIH's program level funding in fiscal year 2020. This funding level,
    supported by more than 330 stakeholder organizations, would allow for
    meaningful growth above inflation in the base budget that would expand
    NIH's capacity to support promising science in all disciplines in
    addition to special initiatives. It also would ensure that funding from
    the Innovation Account established in the 21st Century Cures Act would
    supplement the agency's base budget, as intended, through dedicated
    funding for specific programs.
        In addition, due to the strain COVID-19 is placing on our
    researchers and research infrastructure, and the strict limits of the
    fiscal year 2021 discretionary spending caps, the Ad Hoc Group supports
    bipartisan proposals to exempt key health programs, including NIH, from
    the fiscal year 2021 budget caps. We believe that investments in
    science and innovation are essential if we are to continue to meet
    current and future health challenges, improve our nation's physical and
    fiscal health, and sustain our leadership in medical research. As the
    Subcommittee has recognized, to remain a global leader in accelerating
    the development of life-changing cures, pioneering treatments, and
    innovative prevention strategies, and in this time of unprecedented
    scientific opportunity, it is essential that Congress sustain robust
    increases in the NIH budget.
        NIH: A Partnership to Save Lives and Provide Hope. The partnership
    between NIH and America's scientists, medical schools, teaching
    hospitals, universities, and research institutions is a unique and
    highly productive relationship, leveraging the full strength of our
    nation's research enterprise to translate this knowledge into the next
    generation of diagnostics, therapeutics, and cures. More than 80
    percent of the NIH's budget is competitively awarded through nearly
    50,000 research and training grants to more than 300,000 researchers at
    over 2,500 universities and research institutions located in every
    state and Washington, D.C. The Federal Government has an essential and
    irreplaceable role in supporting medical research. No other public,
    corporate or charitable entity is willing or able to provide the broad
    and sustained funding for the cutting-edge basic research necessary to
    yield new innovations and technologies of the future.
        NIH has supported biomedical research to enhance health, lengthen
    life, respond to emerging health threats, and reduce illness and
    disability for more than 100 years. The following are a few of the many
    examples of how NIH research has contributed to improvements in the
    nation's health.
      --Amidst a global pandemic, steady investment over the past few years
            in NIH has enabled NIH to rapidly scale up clinical trials of
            candidates for a SARS-COV-2 vaccine. The record speed at which
            we are seeing progress toward a vaccine is a testament to the
            value of supporting basic and clinical research over time.
            Vaccines continue to be one our most cost-effective public
            health tools. Every $1 spent on routine childhood vaccinations
            is estimated to save $5 in direct costs, and $11 in broader
            costs to society.
      --Breakthroughs in the treatment of depression came in 2019 with FDA
            approval of two new drugs--one for treatment-resistant
            depression and the first ever treatment for postpartum
            depression. These approvals follow nearly three decades of
            research funded by the NIH to identify novel mechanisms of drug
            action.
      --The NIH has supported research on sickle cell disease (SCD) since
            1948, and the disease currently affects about 100,000
            Americans. Today, an ongoing multi-center clinical trial is
            using gene therapy to replace the defective gene that causes
            SCD, beta globin, in patient's blood cells and effectively
            curing them of disease.
      --In 2007, induced pluripotent stem cells (iPSC) were discovered when
            adult cells were re-engineered into early non-differentiated
            versions of themselves. In late 2019, the National Eye
            Institute launched a first-in-human clinical trial to test the
            safety of a novel patient-specific iPSC therapy to treat the
            ``dry'' form of Age-related Macular Degeneration (AMD), the
            most common form of the disease and the leading cause of vision
            loss in the age 65+ population.
      --NIH-supported researchers continue to work toward strategies to
            better prevent, identify, and treat pain and substance use
            disorders through the HEAL (Helping to End Addiction Long-term)
            Initiative. HEAL aims to support research into new, non-
            addictive medication and to establish public and private
            partnerships to develop best practices in communities.
      --Today, treatments can suppress HIV to undetectable levels, and a
            20-year-old HIV-positive adult living in the U.S. who receives
            these treatments is expected to live into his or her early 70s,
            nearly as long as someone without HIV.
      --NIH funding supported research that contributed to all of the 210
            new drugs approved by the FDA between 2010 and 2016.
      --The death rate for all cancers combined has been declining since
            the early 1990s for adults and since the 1970s for children.
            Overall cancer death rates have dropped by nearly 29 percent
            with more than 2.9 million deaths avoided in total between 1991
            and 2017. Research in cancer immunotherapy has led to the
            development of several new methods of treating cancer by
            restoring or enhancing the immune system's ability to fight the
            disease.
        For patients and their families, NIH is the ``National Institutes
    of Hope.''
        Sustaining Scientific Momentum Requires Sustained Funding. The
    leadership and staff at NIH and its Institutes and Centers have engaged
    the broader community to identify emerging research opportunities and
    urgent health needs and to prioritize precious Federal dollars to areas
    demonstrating the greatest promise. Sustained robust increases in NIH
    funding are needed if we are to continue to take full advantage of
    these opportunities to accelerate the development of pioneering
    treatments and innovative prevention strategies.
        One long-lasting potential impact of investments in NIH is on the
    next generation of scientists. Sustained increases in NIH funding over
    the last 5 years has allowed NIH to double the investment in early
    stage investigators (ESIs). In 2015, NIH only funded about 600 grants
    for ESIs and the career outlook for early career researchers seemed
    grim. This past year, NIH was able to fund about 1300 grants for ESIs
    reinvigorating the spirits of researchers in the biomedical workforce.
    Sustained increases will allow NIH to continue support of new talent
    and innovation in biomedical research.
        Even with the recent investment in NIH, nearly 4 of every 5
    research ideas that are proposed to NIH every year cannot be funded.
    Additional funding is needed if we are to strengthen our nation's
    research capacity, ensure a medical research workforce that reflects
    the racial and gender diversity of our citizenry, and inspire a passion
    for science in current and future generations of researchers.
        NIH is Critical to U.S. Competitiveness. Our country still has the
    most robust medical research capacity in the world; however, other
    countries have significantly increased their investment in biomedical
    science, which leaves us vulnerable to the risk that talented medical
    researchers from all over the world may return to better opportunities
    in their home countries. We cannot afford to lose that intellectual
    capacity, much less the jobs and industries fueled by medical research.
    The U.S. has been the global leader in medical research because of
    Congress's bipartisan recognition of NIH's critical role. To continue
    our dominance, we must reaffirm this commitment to provide NIH the
    funds needed to maintain our competitive edge.
        NIH: An Answer to Challenging Times. Research supported by NIH
    drives local and national economic activity, creating skilled, high-
    paying jobs and fostering new products and industries, and catalyzes
    increases in private sector investment. A $1 increase in public basic
    research stimulates an additional $8.38 investment from the private
    sector after 8 years. A $1 increase in public clinical research
    stimulates an additional $2.35 in private sector investments after 3
    years. According to a United for Medical Research report, in 2019, NIH-
    funded research supported more than 476,000 jobs across the U.S. and
    generated more than $81 billion in new economic activity.
        The Ad Hoc Group's members recognize the tremendous challenges
    facing our nation and acknowledge the difficult decisions that must be
    made to restore our country's fiscal health. Strengthening our
    commitment to medical research, through robust funding of the NIH, is a
    critical element in ensuring the health and well-being of the American
    people and our economy. Therefore, for fiscal year 2021, the Ad Hoc
    Group for Medical Research recommends that NIH receive $44.7 billion to
    continue the momentum in our nation's investment in medical research.
                                     ______

          Prepared Statement of the Aids Alliance for Women, Infants,
                           Children, Youth & Families
        Dear Chairman Blunt and Members of the Subcommittee:
        AIDS Alliance for Women, Infants, Children, Youth & Families (AIDS
    Alliance) was founded in 1994 to help respond to the unique concerns of
    HIV-positive and at-risk women, infants, children, youth, and families.
    AIDS Alliance conducts policy research, education, and advocacy on a
    broad range of HIV/AIDS prevention, care, and research issues. We are
    pleased to offer written testimony for the record as part of the fiscal
    year 2021 Labor, Health and Human Services, Education, and Related
    Agencies appropriations measure and endorse maintaining separate
    funding and support for Part D of the Ryan White Program.
                       ryan white part d funding request
        Sufficient funding of Ryan White Part D, the program funded solely
    to provide family-centered primary medical care and support services
    for women, infants, children, and youth with HIV/AIDS has successfully
    identified, linked, and retained these vulnerable populations in much
    needed care and treatment, resulting in optimum health outcomes. We
    thank the Subcommittee for its continuous support of the Ryan White
    Program and respectfully request that the Subcommittee maintain its
    commitment to the Ryan White Part D and increase Ryan White Part D
    funding by $9.9 million in fiscal year 2021.
                    ryan white part d background and history
        Congress first acted to address pediatric AIDS in 1987, due to the
    alarming increase in the number of reported pediatric AIDS cases by
    providing $5 million for the Pediatric AIDS Demonstration Projects in
    the fiscal year 1988 budget. Those demonstration projects became part
    of the Ryan White CARE Act of 1990 and today are known as Ryan White
    Part D. Since the program's inception in 1988, Part D programs have
    served approximately 200,000 women, infants, children, youth, and
    family members. These programs have been and continue to be the entry
    point into medical care for these vulnerable populations. The family-
    centered primary medical and supportive services provided by Part D are
    uniquely tailored to address the needs of women, including HIV positive
    pregnant women, HIV exposed infants, children and youth. Part D
    programs are the only perinatal clinical service available to serve
    HIV-positive pregnant women and HIV exposed infants, when payments for
    such services are unavailable from other sources. Ryan White Part D
    programs have been extremely effective in bringing the most vulnerable
    populations into and retained in care and is the lifeline for women,
    infants, children and youth living with HIV/AIDS. The Part D programs
    continue to be instrumental in preventing mother-to-child transmission
    of HIV and for ensuring that women, including HIV-positive pregnant
    women, HIV exposed infants, children and youth have access to quality
    HIV care. The program is built on a foundation of combining medical
    care and essential support services that are coordinated,
    comprehensive, and culturally and linguistically competent. This model
    of care addresses the healthcare needs of the most vulnerable
    populations living with HIV/AIDS in order to achieve optimal health
    outcomes.
        Approximately $75.1 million was appropriated to Ryan White Part D
    in fiscal year 2019 to provide comprehensive outpatient ambulatory
    family-centered primary and specialty medical care and support services
    for women, infants, children and youth with HIV. Ryan White Part D
    provided funding to 115 community-based organizations, including
    academic medical centers and hospitals, federally qualified health
    centers, and health departments in 39 states and Puerto Rico. These
    grant recipients also provide case management services (medical and
    non-medical); referrals for inpatient hospital services; treatment for
    substance use, and mental health services. Part D recipients also
    receive assistance from other parts of the Ryan White Program that help
    support HIV testing and linkage to care services; provide access to
    medication; additional medical care, such as dental services; and key
    support services, such as case management and transportation, which all
    are essential components of the highly effective Ryan White HIV care
    model. This model has continuously provided comprehensive quality
    healthcare delivery systems that have been responsive to women,
    infants, children, youth and families for three decades.
               a response to women, infants, children, and youth
        Ryan White Part D programs have been extremely effective in
    bringing our most vulnerable populations into care and developing
    medical care and support services especially designed to reach women,
    infants, children, and youth. The groundbreaking results of the AIDS
    Clinical Trial Group study 076 that proved the efficacy of AZT in
    preventing mother-to-child transmission of HIV was significant for Ryan
    White Part D programs as these programs played a leading role in
    reducing mother-to-child transmission of HIV-from as many as 2000
    babies born HIV-positive in 1990 to roughly 181 cases in 2012. As
    appropriate funding is critical to maintain and improve upon this
    success, AIDS Alliance was pleased that the President's fiscal year
    2019 budget focused on accelerating the elimination of perinatal HIV
    infection in the United States. Appropriate funding is critical to
    maintain and improve upon this success, as an estimate for 2006
    suggested that approximately 8,500 HIV-positive women that need
    counseling services and support to prevent pediatric HIV infections
    were giving birth every year in the United States. The most recent
    available data reports that 11,355 infants (including HIV exposed
    infants) and children were served by Ryan White Part D in 2010.
    According to the CDC, youth aged 13-24 made up 21 percent of all new
    HIV diagnoses in the country in 2017. Eighty-seven percent of those new
    diagnoses among young men and thirteen percent were among young women.
    Gay and bisexual men accounted for 69 percent of the 37,832 new HIV
    diagnoses in 2018 and heterosexual men accounted for 7 percent of new
    HIV diagnoses. Ryan White Part D programs are the entry point into
    medical care for many of these HIV-positive youth as this is the age
    group least likely to have access to quality healthcare. Though HIV
    diagnoses among women have declined in recent years, more than 7,000
    women received an HIV diagnosis in 2017. According to the Health
    Resources and Services Administration, approximately 26.5 percent of
    women received medical care from Ryan White Programs in 2018. Part D
    provides medical and supportive services to a large number of women
    over 50 who are HIV survivors which is a testament to the high standard
    of care provided to Ryan White Part D programs. Support and care
    through the Ryan White Part D program was and continues to be funding
    of last resort for the most vulnerable women and children, who often
    have fallen through the cracks of other public health safety nets. The
    Ryan White Part D program will dramatically improve health access and
    outcomes for many more women, infants, children, and youth living with
    HIV disease.
                            ending the hiv epidemic
        New efforts to end the HIV epidemic in the United States focus on
    four key strategies: Diagnose Treat, Prevent, and Respond, in order to
    reduce new HIV infections by 2030. Ryan White Part D programs are
    essential to the success of the Ending the HIV epidemic as Ryan White
    Part D is an effective model of care and has been extremely effective
    in retaining our most vulnerable populations in care and treatment. The
    comprehensive coordinated medical care and support services provided by
    Ryan White Part D are uniquely tailored to address the needs of women,
    including HIV positive pregnant women, HIV exposed infants, children
    and youth living with HIV/AIDS and are central components of a highly
    effective model of care designed to achieve optimal health outcomes.
    The family-centered primary medical and specialty care along with
    supportive services provided by Ryan White Part D funded programs have
    enabled these programs to successfully engage and retain vulnerable
    populations in much needed care and treatment, resulting in positive
    health outcomes. Ryan White Part D is extremely cost effective relative
    to the care and treatment services provided to populations highly
    impacted by HIV and remain a critical component of the overall Ryan
    White Program as their vast networks of service providers are fully
    engaged in addressing and meeting the critical healthcare needs of
    women, infants, children and youth with HIV and AIDS.
                                   conclusion
        The requested increase of $9.9 million in fiscal year 2021 will
    enable Ryan White Part D programs, across the country to continue to
    deliver life-saving HIV/AIDS care and treatment for women, infants,
    children and youth with HIV and to ensure that these populations are
    fully engaged and retained in care. We thank the Subcommittee for its
    work in ensuring that women, infants, children, and youth, living with
    HIV receive the much needed care and treatment services necessary to
    sustain their lives.

        [This statement was submitted by Dr. Ivy Turnbull, Deputy Executive
    Director, Aids Alliance for Women, Infants, Children, Youth &
    Families.]
                                     ______

                    Prepared Statement of The AIDS Institute
        Dear Chairman Blunt and Members of the Subcommittee:
        The AIDS Institute, a national public policy, research, advocacy,
    and education organization, is pleased to offer testimony in support of
    domestic HIV and hepatitis programs in the fiscal year 2021 Labor,
    Health and Human Services, Education, and Related Agencies
    appropriation measure. Last year, you and your colleagues showed
    incredible leadership by increasing funding for domestic HIV programs
    by over $300 million. This funding will allow jurisdictions across the
    United States to begin planning the Ending the HIV Epidemic Initiative
    (ETE Initiative). We urge you to fully fund the request for year two of
    the Initiative so that these jurisdictions can transition from planning
    to implementation. We also request that core public health programs
    that provide essential HIV prevention and treatment services are
    adequately funded, and we request significant new funding for viral
    hepatitis programs in order to combat the skyrocketing cases of viral
    hepatitis in the country. Finally, we urge you to provide immediate
    supplemental funding for HIV and hepatitis programs in order to
    mitigate the impact COVID-19 has on people living with and at risk of
    HIV and hepatitis.
                            hiv in the united states
        There are currently over 1.1 million people living with HIV in the
    United States. Since the height of the epidemic, there have been
    tremendous advancements in HIV treatment and prevention. A person
    living with HIV on treatment can expect to live a near full life, and
    if they achieve an undetectable viral load, are unable to pass HIV on
    to a partner. The toolbox for HIV prevention is ever expanding, with
    pre-exposure prophylaxis (PrEP) now available in addition to
    traditional prevention techniques like condoms and syringe service
    programs. Despite these advancements, new cases of HIV have been
    stagnant at around 39,000 cases a year since 2013, although we are
    concerned that the disruption of in-person outreach and care caused by
    COVID-19 may result in HIV outbreaks. Ending the HIV epidemic will
    require increased Federal investments in the public health
    infrastructure that serves people living with and at risk of HIV.
                       ending the hiv epidemic initiative
        In last year's State of the Union Address, the president announced
    the Ending the HIV Epidemic Initiative. This initiative has the goal of
    reducing new HIV infections by 75 percent in the first 5 years and 90
    percent by the tenth year. To do so, the Initiative focuses on 57
    jurisdictions across the nation that have the highest burden of new
    infections. We thank your Subcommittee for leading Congressional action
    last year which resulted in $261 million for the first year of this
    Initiative. Jurisdictions across the nation have been eagerly
    developing plans to combat the HIV epidemics that cater to the unique
    needs of their populations. A significant increase in funding is
    necessary for year two of the EHE Initiative so that these
    jurisdictions can transition from planning to implementation, directing
    resources to areas at most need.
        We urge you to fund year two of the EHE Initiative at the
    administration's requested levels: $371 million for the CDC Division of
    HIV/AIDS Prevention to do targeted testing, connection to treatment,
    and robust surveillance; $165 million for the Ryan White HIV/AIDS
    Program to increase access to high-quality HIV care and treatment; $137
    million for HRSA's Community Health Center program to provide
    prevention services emphasizing PrEP; $16 million for NIH's Centers for
    AIDS Research to provide best practices to guide the plan; and $27
    million for the Indian Health Service to provide HIV prevention,
    treatment, education, and hepatitis C (HCV) elimination in Indian
    Country.
                               cdc hiv prevention
        CDC's Division of HIV/AIDS Prevention focuses resources on those
    populations and communities most affected by investing in high-impact
    prevention. One in seven people living with HIV in the United States
    are unaware of their status, and many people newly diagnosed with HIV
    have been living with HIV for many years. There is no single way to
    prevent HIV, but jurisdictions use a combination of effective evidence-
    based approaches including testing, linkage to care, education,
    condoms, syringe service programs, and PrEP. We urge the Subcommittee
    to fund CDC's HIV Prevention program at $1.293 billion, which includes
    $100 million for school-based HIV prevention efforts and $371 million
    for the Ending the HIV Epidemic Plan.
                        the ryan white hiv/aids program
        The Ryan White HIV/AIDS Program provides medications, medical care,
    and essential coverage completion services to almost half of all people
    living with HIV in the United States, many of whom are uninsured or
    underinsured. With people living longer and continued new diagnoses,
    the demands on the program continue to grow. The Ryan White Program
    successfully engages individuals in care and treatment, increases
    access to HIV medications, and helps over 86 percent of clients achieve
    viral suppression. Science has proven that if a person achieves viral
    suppression, they cannot transmit HIV to another person, making the
    Ryan White Program also integral for preventing new HIV infections. The
    AIDS Drug Assistance Program (ADAP), provides people access to
    lifesaving medications by helping clients afford insurance premiums,
    deductibles, and high cost-sharing of their medications, and is an
    important component in the successful health outcomes for Ryan White
    clients.
        The AIDS Institute requests that the Subcommittee fund the Ryan
    White HIV/AIDS Program at a total of $2.652 billion in fiscal year
    2020, distributed in the following manner:
        Part A at $686.7 million; Part B (Care) at $437 million; Part B
    (ADAP) at $943.3 million; Part C at $225.1 million; Part D at $85
    million; Part F/AETC at $35.5 million; Part F/Dental at $18 million;
    and Part F/SPNS at $34 million; Ending the HIV Epidemic Plan at $165
    million.
                            minority aids initiative
        As racial and ethnic minorities in the U.S. are disproportionately
    impacted by HIV/AIDS, it is critical that the Subcommittee continue to
    fund the Minority HIV/AIDS Fund and Minority AIDS programs at SAMHSA.
    We urge the Subcommittee to appropriate $105 million for the Minority
    HIV/AIDS Fund; and $160 million for SAMHSA's Minority AIDS Initiative
    Program.
                           viral hepatitis in the u.s
        Over the past decade, there has been a resurgence of viral
    hepatitis in the United States, largely driven by the opioid epidemic.
    CDC data modeling suggests that approximately 3.2 million people are
    currently living with HBV or HCV. However, because of insufficient
    funding for testing and surveillance, only about half of those
    individuals are aware of their infection. Annual diagnoses have
    increased substantially, with a more than 400 percent increase in new
    infections of HCV from 2010 to 2018. The CDC estimates that over 70
    percent of the approximately 44,000 new cases identified in 2018 alone
    were the result of injection drug use. Despite the availability of a
    highly effective vaccine for HAV and HBV, there have been recent HAV
    outbreaks in multiple states across the country, and an increase in HBV
    cases nationwide, which are also related to the opioid epidemic.
    Despite the availability of a cure for HCV, some 2.4 million people are
    currently living with the disease. Left untreated, HBV and HCV can
    cause liver damage, cirrhosis, and liver cancer. The Federal Government
    must invest in testing, surveillance, and linkage to treatment in order
    to staunch the viral hepatitis epidemics.
                 infectious disease impact of the opioid crisis
        The clear link between viral hepatitis, HIV, and opioid use
    indicate that there should be better coordination between programs
    designed to combat opioid use and to address the HIV and viral
    hepatitis epidemics.
        Starting in fiscal year 2019, Congress allocated new funds to
    enhance the nation's efforts to prevent and treat infectious diseases
    commonly associated with injection drug use. That legislation also
    authorizes CDC to expand surveillance for those diseases, which
    includes viral hepatitis and HIV. The AIDS Institute supports the
    administration's proposed $58 million for CDC's infectious diseases and
    opioid epidemic efforts. This new funding would allow CDC to work
    collaboratively with state and local health departments to improve
    knowledge of the full scope and burden of these infectious diseases.
                          cdc viral hepatitis program
        Despite the large increase in the number of cases, the CDC's Viral
    Hepatitis program is only funded at $39 million in fiscal year 2020,
    which is a far cry from the $393 million the CDC estimated it would
    need for a national program focused on decreasing mortality and
    reducing the spread of the disease.\1\ Unfortunately, the
    administration did not request an increase in its fiscal year 2021
    budget proposal. We cannot begin to address the rise in viral hepatitis
    and combat the impact of the opioid crisis without a significant
    increase in funding commensurate with the importance of eradicating the
    epidemic. The AIDS Institute recommends $134 million for CDC viral
    hepatitis prevention activities.
    ---------------------------------------------------------------------------
        \1\ Centers for Disease Control and Prevention's Pathway to
    Eliminating Hepatitis B and Hepatitis C and Professional Judgment
    Budget, fiscal year 2018-fiscal year 2027.
    ---------------------------------------------------------------------------
                            syringe service programs
        Syringe service programs (SSPs) are an important tool in the fight
    to end the opioid, HIV, and hepatitis epidemics because they have been
    proven to reduce the incidence of new HIV and viral hepatitis among
    people who inject drugs: The presence of SSPs has been associated with
    a 50 percent decline in new HIV and viral hepatitis incidence. When
    these SSPs are combined with medication-assisted treatment, there is a
    two-thirds reduction in HIV and HCV transmission. In order to ensure
    that local jurisdictions have the capacity and flexibility to expand
    SSPs in areas that could benefit from these services, Congress must
    remove the restrictions on the use of Federal funds for the purchase of
    sterile syringes. Sterile syringes are a large part of SSPs budgets and
    removing this ban will encourage state and local governments to expand
    these life-saving and effective programs.
        One of our nation's most effective tools in fighting opioid-related
    infectious diseases is syringe service programs. We urge your
    Subcommittee to remove all restrictions on Federal funding for syringe
    service programs, including for the purchase of sterile syringes.
                   hiv, hepatitis, and the impact of covid-19
        The COVID-19 pandemic has significantly impacted the public health
    infrastructure in the United States. Public health programs have had to
    reckon with scarce resources, reassigned staff, and disruption of in-
    person outreach and provision of services in order to protect their
    staff and clients from the spread of COVID-19. Experts in HIV and viral
    hepatitis are worried that these disruptions are resulting in new HIV
    and hepatitis outbreaks because people are not able to access effective
    preventive services during the pandemic. We urge your Subcommittee to
    provide supplemental funding for these programs immediately to enable
    them to grapple more effectively with these challenges and minimize the
    damage to people in vulnerable communities and to our nation's effort
    to eliminate these epidemics.
        We urge you to provide $500 million in supplemental funding for the
    Ryan White HIV/AIDS Program to meet the pressing needs of Ryan White
    clients during the COVID-19 pandemic. Ryan White programs have been
    simultaneously shifting their service delivery model to incorporate
    telehealth services, increase case management, cover new costs for
    their existing clients, and ensure that they have the capacity to care
    for the many new clients they are likely to see as a result of the
    economic downturn. Demand for Ryan White services, including the AIDS
    Drug and Assistance Program (ADAP), will increase in the next year
    because millions of people have lost their jobs and their job-based
    health insurance; additional funding is needed immediately to ensure
    continued access to care and uninterrupted HIV treatment.
        HIV prevention programs across the United States have had to reduce
    or suspend in-person testing, reassign staff to COVID-19 response,
    suspend PrEP initiations, and transition to telehealth prevention
    models. In order for these programs to continue to provide HIV
    prevention services, and to reach the goals of the Ending the HIV
    Epidemic Initiative, we urge your Subcommittee to provide $100 million
    in supplemental funding to the CDC's Division of HIV/AIDS Prevention,
    so that HIV prevention programs can expand the infrastructure needed to
    provide telehealth prevention services including at-home testing, and
    backfill gaps in programming that have occurred because resources and
    personnel have been reassigned to COVID-19 response.

        [This statement was submitted by Rachel Klein, Deputy Executive
    Director, The AIDS Institute.]
                                     ______

                       Prepared Statement of AIDS United
        As the committee continues its important deliberations on the
    fiscal year 2021 Labor, Health and Human Services, Education, and
    Related Agencies (Labor-HHS) appropriation bill, we thank you for your
    continued commitment to addressing HIV/AIDS in the United States and
    request that you maintain the Federal Government's commitment to safety
    net programs that protect the public health. Specifically, we ask that
    you adequately fund the CDC Division of HIV prevention and surveillance
    activities at $1.24 billion to prevent new infections, the Ryan White
    Program at $2.65 billion to better ensure that all people living with
    HIV (PLWH) receive treatment and are retained in care, and HIV/AIDS
    Research at the National Institutes of Health at $3.5 billion to
    support innovative research moving us ever-closer to a vaccine, better
    prevention methods, or a cure. We also urge the committee to end the
    ban on the use of Federal funds for syringe exchange to prevent HIV
    outbreaks that many parts of the country are at greatly increased risk
    of experiencing due to the opioid & overdose epidemics.
        We can end the HIV epidemic in the United States. Once, this
    sentiment would have been unthinkable, but now, nearly forty years
    since the first identified cases, it is a concept endorsed by all major
    public health agencies in the country. Recent scientific advances and
    groundbreaking HIV research have shown us that not only is it possible
    for people living with HIV to live long, healthy lives while on
    antiretroviral medication, but that people living with undetectable
    viral load cannot transmit the virus to their partners. We are in
    possession of the science and the tools that are necessary to end the
    HIV epidemic the United States, and the Federal Government has
    committed to & developed plans to do so across administrations in the
    2010 National HIV/AIDS Strategy and the A Plan for America: Ending the
    HIV Epidemic initiative announced in 2018. But this knowledge and
    planning alone will not affect the change we need; we must commit the
    resources to make plans a reality.
        Over one million Americans are living with HIV, and annual HIV
    incidence continues to hover at 37,600 new HIV transmissions each year,
    due in part to increases in injection drug use across the country
    related to the opioid epidemic that are resulting in new HIV outbreaks,
    especially in areas with scarce public health resources. It is only
    through significant Federal investment and an unyielding commitment to
    providing access to the support services needed to ensure communities
    impacted by HIV are empowered to prioritize to their care and treatment
    that we will be able to end the HIV epidemic.
        We are encouraged by the Administration's increased funding request
    for HIV prevention, care and treatment for the Ryan White HIV/AIDS
    Program, HIV prevention programs at the Centers for Disease Control and
    Prevention (CDC), and HRSA's Community Health Centers Program and urge
    the Labor-HHS subcommittee to build upon these proposed funding
    increases in your fiscal year 2021 budget. However, we also encourage
    you to diverge with the Administration's budget request by providing
    adequate funding for HIV/AIDS research at the National Institutes of
    Health (NIH) and the Substance Abuse and Mental Health Services
    Administration (SAMHSA). Below are specific discretionary programs we
    ask you to support, along with accompanying justifications.
                        the ryan white hiv/aids program
        The Ryan White HIV/AIDS Program, acting as the payer of last
    resort, provides medications, medical care, supportive services, and
    essential coverage completion services to almost 550,000 low-income,
    uninsured, or underinsured individuals living with HIV. Those living
    with HIV who are in care and on treatment have a much higher chance of
    being virally suppressed, leading to reduced transmission of the virus,
    and the Ryan White Program boasts significantly higher rates of viral
    suppression than other care programs: over 85 percent of Ryan White
    clients have achieved viral suppression, compared to just 49 percent of
    all PLWH nationwide. It is precisely because Ryan White Program clients
    can access high-quality, patient-centered, comprehensive care that is
    financially accessible and culturally competent that they can remain in
    care and adhere to treatment.
        The Ryan White Program continues to serve populations that are
    disproportionally impacted by HIV, including racial and ethnic
    minorities, who make up three-quarters of Ryan White clients. Almost
    two-thirds of Ryan White clients are living at or below 100 percent of
    the Federal Poverty Level. To improve the continuum of care and
    progress toward an HIV/AIDS-free generation, sustained funding for all
    parts of the Ryan White Program is needed. With a changing and
    uncertain healthcare landscape, continued funding for the Ryan White
    Program is critically important to ensure that those at risk of or
    living with HIV have uninterrupted access to healthcare, medications,
    and services.
        Funding for the Ryan White Program is critical to improving health
    coverage and outcomes for people living with HIV, therefore, we urge
    you to fund the Ryan White Program at a total of $2.652 billion in
    fiscal year 2021, an increase of $263 million over fiscal year 2020,
    distributed as follows: Part A, $686.7 million; Part B/Care, $437
    million; Part B/ADAP, $943.3 million; Part C, $225.1 million; Part D,
    $85 million; Part F/AIDS Education Training Centers, $58 million; Part
    F/Dental, $18 million; Part F/Special Projects of National
    Significance, $34 million; and $165 million in additional funding to
    support activities in the Ending the HIV Epidemic initiative.
                  division of hiv/aids prevention and the cdc
        Over the almost forty years since the beginning of the epidemic,
    there has been incredible progress in the fight against HIV/AIDS.
    Because of the efforts by CDC's National Center for HIV/AIDS, Viral
    Hepatitis, STD and TB Prevention (NCHHSTP) and its grantees, hundreds
    of thousands of new infections have been averted and billions of
    dollars in treatment costs have been saved. This confirms that HIV
    prevention efforts are working. Through expanded HIV testing efforts,
    largely funded by the CDC, the number of people who are aware of their
    HIV status has increased from 81 percent in 2006 to 87 percent in 2018;
    while all progress is worth celebrating, new testing expansion
    opportunities in the Plan for America initiative should equally
    energize us to support new and existing, successful testing programs,
    to the extent that Congress will fund them.
        Continued funding for CDC's HIV prevention programs will support
    HIV testing, targeted prevention interventions, public education
    campaigns, and surveillance activities. Ending HIV will take a
    multifaceted approach. This funding supports a combination of effective
    evidence-based approaches including testing, linkage to care, condoms,
    and syringe services programs; it also supports access to pre-exposure
    prophylaxis (PrEP), the FDA-approved medication that keeps HIV negative
    people from acquiring HIV in sexual encounters.
        For fiscal year 2021, we urge you to fund the Division of HIV/AIDS
    Prevention and the CDC at $1.293 billion.
             hiv/aids research at the national institutes of health
        Building on recent progress, robust support for HIV research must
    continue until better, more effective and affordable prevention &
    treatment regimens--and eventually a cure--are developed and
    universally available. For the U.S. to maintain its position as the
    global leader in HIV/AIDS research for the 35 million people globally
    and 1.2 million people living with HIV in the U.S., we must invest
    adequate resources in HIV research at the NIH. HIV/AIDS research
    supported by the NIH is far-reaching and has supported innovative basic
    science for better drug therapies, and behavioral and biomedical
    prevention interventions, saving and improving the lives of millions
    around the world. Specifically, AIDS research supported by the NIH has
    proved the efficacy of PrEP, the groundbreaking effectiveness of
    treatment as prevention, and the first partially effective AIDS
    vaccine. We are appreciative of the Committee's work to increase
    funding for the NIH in recent years and urge you to direct some of
    these resources and language to protect such funding to continued HIV/
    AIDS research so that more effective HIV treatments and ultimately a
    cure can be realized.
        We request that HIV/AIDS research at the NIH receive a total $3.502
    billion in fiscal year 2021.
      combating viral hepatitis and protecting access to sterile syringes
        AIDS United strongly urges the Committee to maintain current
    language allowing the use of Federal funds for syringe services
    programs, and expand eligibility beyond current, limiting allowances
    for jurisdictions experiencing or at risk for an HIV outbreak or
    elevated levels of HCV and where local public health or local law
    enforcement authorities deem a site to be appropriate. People with HIV
    infection in the United States are often affected by chronic viral
    hepatitis; about one-third experience coinfection with either Hepatitis
    B (HBV) or HCV, and viral hepatitis progresses faster and causes more
    liver-related health problems among people with HIV than among those
    who do not have HIV. Over the last several years, the opioid crisis has
    led to concerning numbers of new infections tied to injection drug use,
    resulting in nearly 55,000 new hepatitis cases each year. Throttled at
    just $39 million a year for the past many years, CDC's viral hepatitis
    programs do not have the needed resources to combat the infectious
    diseases associated with the opioid epidemic.
        The CDC has identified 220 counties that are most vulnerable to
    outbreaks of HCV and HIV related to injection drug use. These counties
    are spread across 26 states and represent only the top 5 percent of
    vulnerable counties overall. At present, more than 93 percent of those
    220 counties vulnerable to HIV/HCV outbreaks do not have comprehensive
    syringe services programs. Over the past thirty years, the CDC has
    collected compelling evidence of syringe services programs'
    effectiveness, safety, and cost-effectiveness for HIV prevention among
    program participants and for reductions in HIV, HCV, and HBV incidence
    rates community-wide. Syringe services programs increase access to
    comprehensive resources such as HIV and Hepatitis testing and linkage
    to treatment, referral to substance use treatment and assistance,
    behavioral health services, primary care, overdose treatment and
    education, Hepatitis A and B vaccinations, connections and referrals to
    other supportive services, and more.
        Syringe services programs are recommended by AIDS United as a key
    component of the Department of Health and Human Services' response to
    the opioid crisis in CDC, HRSA, and SAMHSA appropriations, and as an
    indispensable tool in any efforts to end the domestic HIV epidemic.
        AIDS United urges the Committee to adequately fund the CDC Division
    of HIV Prevention's surveillance activities at $872.7 million and to
    increase funding for the CDC Division of Viral Hepatitis activities to
    $134 million for the purpose of ensuring appropriate levels of testing,
    education, screening and linkage to care, surveillance, and on-the-
    ground syringe services programs that reduce the infectious disease
    consequences of the nation's opioid crisis.
        A comprehensive accounting of the community's fiscal year 2021
    funding priorities may be accessed at bit.ly/ABACFY21 (note: case
    sensitive link). Please do not hesitate to be in touch for more
    information regarding HIV appropriations with our Vice President for
    Policy & Advocacy, Carl Baloney, Jr., at cbaloney@aidsunited.org.
        AIDS United looks forward to a positive outcome for the funding
    request for HIV/AIDS domestic programs that will enable us to end the
    HIV epidemic in the United States. We thank you for your continued
    leadership and support of these critical programs for so many people
    living with HIV, and the organizations and communities that serve them
    nationwide.
        Sincerely.

        [This statement was submitted by Jesse Milan, Jr., JD, President &
    CEO, AIDS United.]
                                     ______

       Prepared Statement of the Alliance to End Slavery and Trafficking
        The Alliance to End Slavery and Trafficking (ATEST) thanks you for
    your leadership in the fight to end child labor, forced labor and human
    trafficking. We appreciate your efforts to pass legislation and provide
    resources to Federal agencies engaged in combating these horrific
    crimes. We seek your assistance in funding essential programs in the
    fiscal year 2021 Labor, Health and Human Services, Education, and
    Related Agencies Appropriations bill. The number of trafficking victims
    significantly exceeds the availability of services at the Departments
    of Labor (DOL), Health and Human Services (HHS) and Education (ED).
    ATEST recommends robust funding and accountability for programs at
    these key departments to fulfill the highest priority mandates of the
    Trafficking Victims Protection Act (TVPA) and related legislation.

                               ATEST FISCAL YEAR 2021 APPROPRIATIONS REQUEST SUMMARY: LHHS
    ----------------------------------------------------------------------------------------------------------------
                                                     Fiscal Year 2020                            Fiscal Year 2021
         Department               Program                Enacted         Authorized Funding   Appropriation Request
    ----------------------------------------------------------------------------------------------------------------
                 Labor           International Labor     $96,000,000                                  $130,040,000
                                 Affairs Bureau
                         -------------------------------------------------------------------------------------------
                          Employment & Training                                                    Report Language
                                 Administration                                                        (see below)
    ----------------------------------------------------------------------------------------------------------------

        Health & Human       Administration for          $28,255,000          $24,000,000              $38,000,000
               Services   Children and Families,
                                Victim Services
                         -------------------------------------------------------------------------------------------
                             Administration for           $3,500,000           $3,500,000               $3,500,000
                          Children and Families,
                                 National Human
                            Trafficking Hotline
                         -------------------------------------------------------------------------------------------
                             Administration for         $147,421,000         $152,420,000             $165,000,000
                          Children and Families,                                                               and
                           Runaway and Homeless                                                    Report Language
                                      Youth Act                                                        (see below)
                         -------------------------------------------------------------------------------------------
                             Administration for                                                    Report Language
                          Children and Families                                                        (see below)
                          Office of Trafficking
                                     in Persons
    ----------------------------------------------------------------------------------------------------------------

                              department of labor
        International Labor Affairs Bureau: $130,040,000.--The Bureau of
    International Labor Affairs (ILAB) is an essential part of the U.S.
    government's international response to forced labor, human trafficking
    and child labor. ILAB's mandates touch on key elements of partnership,
    prevention, protection and prosecution, such as child labor,
    international labor diplomacy, international economic affairs, and
    labor-related trade policy. Through highly respected research, grant
    making and policy development work, ILAB identifies cases of goods
    reported on the annual ``List of Goods Produced by Child Labor or
    Forced Labor.'' ATEST was pleased that Congress recognized the need for
    increased resources for ILAB's critical work in fiscal year 2020 and
    encouraged Congress to continue to enhance efforts to identify . In
    fiscal year 2021, we request $27,000,000 for the administration of
    ILAB, $59,000,000 for the Child Labor and Forced Labor program,
    $36,000,000 for the Workers' Rights program, and $8,040,000 for program
    evaluation.
        Employment and Training Administration: Report Language.--Labor
    trafficking affects both U.S. citizens and foreign nationals working
    across many industries, most commonly domestic work, agriculture,
    manufacturing, janitorial services, hotel services, construction,
    health and elder care, hair and nail salons, and strip club dancing.
    DOL needs resources to protect and support victims, particularly with
    much needed skills training and job placement services, as well as
    providing referrals to shelter, medical care, mental health services,
    legal services, and case management. Proposed Report Language: The
    Committee encourages the Employment and Training Administration to
    increase access and eligibility to employment and training services for
    survivors of all forms of human trafficking as required by Sec. 107(b)
    of the Trafficking Victims Protection Act (Public Law 106-386). The
    Committee also encourages the development and integration of training
    to identify potential signs of trafficking and referral options as a
    regular activity for State Farmworker Monitor Advocates, and during the
    provision of relevant services to particular at-risk populations,
    including through the Youth Build, Job Corps and Reentry Employment
    Opportunity programs. The Committee also encourages the Department to
    continue and expand its pilot initiative to develop and support
    networks of service providers in collaboration with HHS and DOJ.
                    department of health and human services
        Administration for Children and Families, Victim Services (ACF):
    $38,000,000.--ACF fulfills mandates of the Trafficking Victims
    Protection Act to (1) Identify and serve victims who are foreign
    nationals; and, (2) Create specialized case management programs to
    assist U.S. citizen victims. The number of trafficking victims
    certified as needing comprehensive, trauma-informed, gender-specific
    services has risen dramatically but funding for services has not kept
    pace. We encourage ACF to use a portion of increased funding for legal
    services for victims. We request that increased funds be utilized
    equally for services for both foreign national victims and U.S. citizen
    and legal permanent resident victims, consistent with demonstrated
    need.
        Administration for Children and Families, the National Human
    Trafficking Hotline (NHTH): $3,500,000.--The NHTH is a toll-free 24/7
    center available to answer calls, online tips and email queries. The
    NHTH collects tips on human trafficking cases, connects victims with
    anti-trafficking services in their area (such as shelter, case
    management, and legal services), and, where appropriate, reports
    actionable tips to law enforcement. The NHTH serves both domestic and
    foreign victims inside the U.S. Since 2007, NHTH has received reports
    of 51,919 cases. The NHTH also collects and provides valuable data on
    human trafficking trends and the prevalence of victims in the U.S. We
    request that $3,500,000 be appropriated consistent with the
    authorization levels, while preserving existing victim services
    funding.
        Administration for Children and Families, Runaway and Homeless
    Youth Act: $165,000,000.--The Runaway and Homeless Youth Act has laid
    the foundation for a national system of services for vulnerable young
    people who are at risk of becoming or have already been victims of
    exploitation and trafficking. These programs provide homeless and
    victimized youth with hope, safety, healing, and opportunities for a
    new life through: emergency shelters, family reunification when safe,
    aftercare, outreach, education and employment, healthcare, behavioral
    and mental health, transitional housing, and independent housing
    options. These programs are often in the best position to prevent
    trafficking and commercial sexual exploitation and provide early
    identification of victims of these crimes. Congress recognized the
    critical role that programs funded through RHYA serve to prevent
    trafficking, identify survivors, and provide services to runaway,
    homeless and disconnected youth by including a 2 year reauthorization
    of RHYA in the Juvenile Justice & Delinquency Prevention Act of 2018.
    We request $165,000,000, the level previously authorized, to increase
    the capacity of programs that serve runaway and homeless youth to
    address human trafficking ($140,000,000 for the Consolidated Runaway,
    Homeless Youth Programs and $25,000,000 for Prevention Grants to Reduce
    Abuse of Runaway Youth), and within these funds designate $5,000,000 to
    increase capacity and provide training for service providers to
    identify and serve exploited and trafficked youth, and $2,000,000 to
    conduct the National Study on the Prevalence, Needs and Characteristics
    of Homeless Youth.
        Administration for Children and Families, Office of Trafficking in
    Persons: Report Language.--In establishing the Office of Trafficking in
    Persons (OTIP), HHS underscored the importance of coordinating
    trafficking efforts across the Administration for Children and Families
    (ACF). ACF works directly with all victims of human trafficking--men,
    women, children, LGBTQ, foreign nationals and domestic clients--and the
    diverse needs and vulnerabilities of these populations can only be met
    by an effective coordinating body networked agency-wide. Proposed
    Report Language: Within the funds provided, the Committee encourages
    ACF to hire sufficient full time employees to support the Office of
    Trafficking in Persons and coordinate trafficking efforts across ACF.
        Administration for Children and Families, Family Youth Services
    Bureau: Report Language.--The process of informing RHYA grantees has
    restricted the ways in which service providers are able to continue to
    provide services to vulnerable youth. For the past several years, RHYA
    grantees have been notified if they will receive a grant or not within
    one day before a grant period is to begin. This lack of sufficient
    notice is extremely problematic for agencies and community based
    organizations working to serve runaway and homeless youth who face
    higher risks of trafficking and violence. We recommend that the current
    bureaucratic process be streamlined, so that RHYA grant applicants are
    notified regarding whether they will receive a grant or not within at
    least 3 months in advance of the start date of a grant. Proposed Report
    Language: That when awarding funds under the Runaway and Homeless Youth
    Act program, the Secretary shall notify all applicants if they were
    successful or not at least 30 days before the grant is to begin as well
    as 30 days before an existing grant is set to end.
        As a champion for the victims of child labor, forced labor and sex
    trafficking, you understand the complexities of these issues and the
    resources needed to respond. We have carefully vetted our requests to
    focus on the most important and effective programs. We thank you for
    your consideration of these requests and your continued leadership. If
    you have any questions, please contact ATEST Coalition Co-Chairs Anita
    Teekah (Anita.Teekah@safehorizon.org) or Terry FitzPatrick (terry.fitz
    patrick@freetheslaves.net).

        Sincerely.

        Coalition to Abolish Slavery and Trafficking (CAST)
        Coalition of Immokalee Workers (CIW)
        Free the Slaves
        Human Trafficking Institute
        National Network for Youth (NN4Y)
        Polaris
        Safe Horizon
        Solidarity Center
        T'ruah: The Rabbinic Call for Human Rights
        United Way Worldwide
        Verite
        Vital Voices Global Partnership
        ATEST is a U.S.-based coalition that advocates for solutions to
    prevent and end all forms of human trafficking and modern slavery
    around the world.
                                     ______

             Prepared Statement of the Alzheimer's Association and
                          Alzheimer's Impact Movement
        The Alzheimer's Association and Alzheimer's Impact Movement (AIM)
    appreciate the opportunity to submit written testimony on the fiscal
    year 2021 appropriations for Alzheimer's research and public health
    activities at the U.S. Department of Health and Human Services.
    Specifically, we respectfully request a $354 million increase for
    Alzheimer's research at the National Institutes of Health (NIH) and $20
    million for implementation of the Building Our Largest Dementia (BOLD)
    Infrastructure for Alzheimer's Act (Public Law 115-406) at the Centers
    for Disease Control and Prevention (CDC). We detail these requests
    below but first want to thank the Subcommittee for it's crucial and
    timely work to support Americans affected by COVID-19.
        As you know, people living with Alzheimer's and other dementia are
    at increased risk of having serious complications relating to COVID-19
    due to their typical age and likelihood of coexisting conditions.
    According to the CDC, older adults and those with serious chronic
    medical conditions like heart disease, diabetes and lung disease are at
    higher risk of getting very sick from this virus. There are currently
    5.8 million Americans age 65 or older living with Alzheimer's dementia
    and more than 95 percent of people with the disease have one or more
    other chronic conditions. This includes 38 percent of people with
    Alzheimer's that also have heart disease and 37 percent that also have
    diabetes. Thank you for your quick, bipartisan work to address and
    support this vulnerable population, and all Americans, during this
    pandemic.
                          alzheimer's association/aim
        Founded in 1980, the Alzheimer's Association is the world's leading
    voluntary health organization in Alzheimer's care, support, and
    research. The Alzheimer's Association is the nonprofit with the highest
    impact in Alzheimer's research worldwide and is committed to
    accelerating research toward methods of treatment, prevention, and,
    ultimately, a cure. The Alzheimer's Impact Movement (AIM) is the
    advocacy arm of the Alzheimer's Association, working in strategic
    partnership to make Alzheimer's a national priority. Together, the
    Alzheimer's Association and AIM advocate for policies to fight
    Alzheimer's disease, including increased investment in research,
    improved care and support, and development of approaches to reduce the
    risk of developing dementia.
            alzheimer's impact on american families and the economy
        The most important reason to address Alzheimer's is because of the
    suffering it causes to millions of Americans and their families.
    Alzheimer's is a progressive brain disorder that damages and eventually
    destroys brain cells, leading to a loss of memory, thinking, and other
    brain functions. Ultimately, Alzheimer's is fatal. We have yet to
    celebrate the first survivor of this devastating disease.
        In addition to the suffering caused by the disease, however,
    Alzheimer's is also creating an enormous strain on the healthcare
    system, families, and Federal and state budgets. While there are over 5
    million Americans currently living with the disease, without
    significant action, as many as 14 million Americans will have
    Alzheimer's by 2050 and costs will exceed $1.1 trillion (in 2020
    dollars). As the current generation of baby boomers age, near-term
    costs for caring for those with Alzheimer's will balloon, as Medicare
    and Medicaid will cover more than two-thirds of the costs for their
    care.
        Caring for people with Alzheimer's will cost all payers--Medicare,
    Medicaid, individuals, private insurers, and HMOs--nearly $20 trillion
    over the next 30 years. As noted in the 2020 Alzheimer's Disease Facts
    and Figures report, in 2020 America will spend an estimated $305
    billion in direct costs for those with Alzheimer's, including $206
    billion in costs to Medicare and Medicaid. Average per person Medicare
    costs for those with Alzheimer's and other dementias are more than
    three times higher than those without these conditions. Average per
    senior Medicaid spending is 23 times higher.
                      investing in alzheimer's treatments
        Congress unanimously passed the National Alzheimer's Project Act
    (NAPA) (Public Law 111-375) in 2010, requiring the creation of an
    annually-updated strategic National Plan to Address Alzheimer's Disease
    (National Plan). The National Plan must include an evaluation of all
    federally-funded efforts in Alzheimer's research, care, and services--
    along with their outcomes. The primary research goal of the National
    Plan is to prevent and effectively treat the disease by 2025.
        If America is going to succeed in the fight against Alzheimer's,
    Congress must continue to provide the resources scientists need to do
    their work. Understanding this, in 2014 Congress passed the
    Consolidated and Further Continuing Appropriations Act of 2015 (Public
    Law 113-235), which included the Alzheimer's Accountability Act (S.
    2192/H.R. 4351). The Alzheimer's Accountability Act requires NIH to
    develop a Professional Judgment Budget focused on the research
    milestones established by the National Plan. This provides Congress
    with an account of the resources that NIH has confirmed are needed to
    reach the 2025 goal. The Alzheimer's Association and AIM urge Congress
    to fund the research targets outlined in the Professional Judgment
    Budget by supporting an additional $354 million for NIH Alzheimer's
    funding in fiscal year 2021.
        Recent funding increases have been critical to progress toward the
    primary research goal to effectively treat and prevent Alzheimer's by
    2025--including advances into new biomarkers to detect the disease;
    building better animal models to enable preclinical testing of
    promising therapeutics; and bolstering the Alzheimer's research
    workforce to enable the expertise, experience, and new thinking needed
    to understand the complex causes of Alzheimer's disease and related
    dementias.
        However, Alzheimer's continues to be the only leading cause of
    death in the United States without a way to prevent, cure, or even slow
    its progression. The primary reason this remains true is that
    investment in Alzheimer's research is still only a fraction of what's
    been applied over time to address other major diseases. Between 2000
    and 2017, the number of people dying from Alzheimer's increased by 145
    percent while deaths from other major diseases have decreased
    significantly or remained approximately the same.
        It is vitally important that NIH continues to increase the
    investment in Alzheimer's research so we can see the same promising
    advances that other major diseases have realized with sustained, robust
    funding. An increase of $354 million in fiscal year 2021 would allow
    scientists to target a precision medicine approach to deliver the right
    treatments at the right stage of the disease; enable NIH to follow up
    on successful Phase I drug trials by initiating more Phase II trials
    focused on new therapeutic targets; and support the inclusion of
    Alzheimer's phenotype and environmental exposure measures in non-
    Alzheimer's cohorts, like cardiovascular disease and cancer, which have
    a wealth of data that could unlock new discovery research and
    accelerate cross-validation of discoveries made in Alzheimer's cohorts.
        A disease-modifying or preventive therapy would not only save
    millions of lives but would save billions of dollars in healthcare
    costs. Specifically, if a treatment became available in 2025 that
    delayed onset of Alzheimer's for 5 years (a treatment similar in effect
    to anti-cholesterol drugs), savings would be seen almost immediately,
    with Medicare and Medicaid saving a cumulative $535 billion in the
    first 10 years.
                public health approach to addressing alzheimer's
        As scientists continue to search for a way to cure, treat, or slow
    the progression of Alzheimer's through medical research, public health
    plays an important role in promoting cognitive function and reducing
    the risk of cognitive decline. Investing in a nationwide Alzheimer's
    public health response will help create population-level improvements,
    achieve a higher quality of life for those living with the disease and
    their caregivers, and reduce associated costs.
        In 2018, Congress acted decisively to address Alzheimer's through
    the passage of the BOLD Infrastructure for Alzheimer's Act (Public Law
    115-406). This strong bipartisan law authorizes $100 million over 5
    years for the CDC to build a robust Alzheimer's public health
    infrastructure across the country. We were glad to see CDC receive $10
    million in fiscal year 2020 for the first year of BOLD's
    implementation. While this funding is an important step forward, CDC
    must receive the full $20 million authorized for fiscal year 2021 to
    ensure the meaningful impact that Congress intended. The Alzheimer's
    Association and AIM urge Congress to include the full $20 million for
    the second year of BOLD's implementation at CDC in fiscal year 2021.
        With this funding, CDC will establish Alzheimer's and Related
    Dementias Public Health Centers of Excellence across the country and
    fund state, local, and tribal public health departments to increase
    early detection and diagnosis, reduce risk, prevent avoidable
    hospitalizations, reduce health disparities, support the needs of
    caregivers, and provide care planning for people living with the
    disease. These important public health actions can allow individuals
    with Alzheimer's to live in their homes longer and delay costly long-
    term nursing home care. The law also aims to increase the analysis and
    timely reporting of data. This data is critical to identifying
    opportunities for public health interventions, helping stakeholders
    track progress in the public health response, and enabling state and
    Federal policymakers to make informed decisions when developing plans
    and policies.
                                   conclusion
        The Alzheimer's Association and AIM appreciate the steadfast
    support of the Subcommittee and its priority setting activities,
    especially during this time. We thank the Subcommittee and Congress for
    previous increases in Alzheimer's research activities at NIH, but the
    current funding level is still short of the total investment needed to
    meet the National Plan's primary research goal of finding a treatment
    or cure for Alzheimer's and other dementias by 2025. We ask Congress to
    continue to address Alzheimer's with the bipartisan collaboration
    demonstrated in previous years by providing an additional $354 million
    for Alzheimer's research activities at NIH and $20 million for
    implementation of the BOLD Infrastructure for Alzheimer's Act at CDC in
    fiscal year 2021.
                                     ______

          Prepared Statement of the Alzheimer's Foundation of America
        Dear Chairman Blunt, Ranking Member Murray and Members of the
    Senate Appropriations Subcommittee on Labor, Health and Human Services,
    and Education, and Related Agencies:
        On behalf of the Alzheimer's Foundation of America (AFA), a
    national organization whose mission is to provide support, services and
    education to individuals, families and caregivers affected by
    Alzheimer's disease and related dementias nationwide, and fund research
    for better treatment and a cure, I am submitting the following
    appropriation requests to the Senate Appropriations Subcommittee on
    Labor, Health and Human Services, and Education, and Related Agencies
    (the ``Subcommittee'') for programs impacting persons living with
    dementia and their care partners in fiscal year 2021:
      --an additional $354 million for a total $3.2 billion appropriation
            for Alzheimer's disease clinical research at the National
            Institutes of Health (NIH);
      --$500 million to fund the Brain Research through Advancing
            Innovative Neurotechnologies (BRAIN) Initiative, a trans-agency
            effort to arm researchers with revolutionary tools to
            fundamentally understand the neural circuits that underlie the
            healthy and diseased brain;
      --$44.7 billion (a $3 billion increase over fiscal year 2020) for
            total spending at the NIH;
      --an additional $50 million to fund caregiver supports and services
            provided by programs administered by the Administration for
            Community Living (ACL), including a $8.5 million increase for
            the Alzheimer's Disease Program for a total expenditure of $35
            million in fiscal year 2021;
      --$20 million to support BOLD Act initiatives at the Centers for
            Disease Control and Prevention (CDC); and
      --$120 million over fiscal year 2020 spending at the Food and Drug
            Administration (FDA) to almost $3.3 billion.
    National Institutes of Health (NIH)
        AFA is extremely grateful to the Subommittee for approving an
    increase in funding for Alzheimer's disease research at NIH for fiscal
    year 2020. The $350 million in additional resources for fighting
    Alzheimer's disease and related dementias at NIH, coupled with other
    increases in recent past fiscal years, will greatly increase our
    chances that promising research gets funded as we move closer to the
    goal of finding a cure or disease-modifying treatment by 2025 as
    articulated in the National Plan to Address Alzheimer's Disease.
        Yet, meaningful treatment is still some ways off and basic science
    into dementia--the type of research funded through NIH--remains vital
    to finding a cure.
        AFA asks the Subcommittee to build upon past progress and continue
    making the battle against Alzheimer's disease a national priority. To
    this end, AFA urges the Subcommittee to provide an additional $354
    million, for a total of approximately $3.2 billion for Alzheimer's
    disease clinical research at NIH in fiscal year 2021.
        The BRAIN Initiative is a large-scale effort to accelerate
    neuroscience research by equipping researchers with the tools and
    insights necessary for treating a wide variety of brain disorders,
    including Alzheimer's disease, schizophrenia, autism, epilepsy, and
    traumatic brain injury. By mapping whole brains in action, the ability
    to identify thousands of brain cells at a time and development of
    innovative brain scanners, BRAIN Initiative research advances and tools
    are needed to better understand the brain and cognitive functioning.
    AFA is asking that $500 million be allocated to conduct BRAIN
    Initiative research for fiscal year 2021.
        AFA also urges the Subcommittee appropriate at least $44.7 billion
    for total NIH spending in fiscal year 2021, a $3 billion increase over
    the NIH's program level funding in fiscal year 2020, as recommended by
    the Ad Hoc Group for Medical Research. This funding level would allow
    for meaningful growth above inflation in the base budget that would
    expand NIH's capacity to support promising science in all disciplines.
    It also would ensure that funding from the Innovation Account
    established in the 21st Century Cures Act would supplement the agency's
    base budget, as intended, through dedicated funding for specific
    programs.
    Centers for Disease Control and Prevention (CDC)
        Last year Congress passed, and the President signed, the Building
    Our Largest Dementia (BOLD) Infrastructure for Alzheimer's Act which
    calls for the Centers for Disease Control and Prevention (CDC) to
    establish Centers of Excellence in Public Health Practice dedicated to
    promoting Alzheimer's disease management and caregiving interventions,
    as well as educating the public on Alzheimer's disease and brain
    health, will establish Alzheimer's disease a public health issue
    increasing American awareness and care training around the disease. To
    fund BOLD Act initiatives at CDC, AFA is requesting $20 million in
    appropriations for fiscal year 2021.
    Food and Drug Administration (FDA)
        AFA is calling for a $120 million increase at FDA in fiscal year
    2021. Such an increase would strengthen FDA systems that guide and
    support agency decisionmaking and stimulate innovation for medical
    products, including improvements in drug and device manufacturing,
    advances in the use of real world evidence in medical product
    development, revisions to the regulatory framework for digital health
    technology, enhancements to research on rare diseases such as less
    common forms of dementia, and new systems that could speed the
    introduction of cost-saving generic drugs.
    Administration on Community Living (ACL)
        AFA is requesting a $50 million increase for vital ACL programming
    across-the-board, including an $8.5 million increase to the Alzheimer's
    Disease Program for a total funding of $35 million in fiscal year 2021.
    In addition, AFA is requesting that the following amounts be allocated
    to these programs that directly impact those living with dementia:
      --National Family Caregiver Support Program (NFCSP): NFCSP provides
            grants to states and territories, based on their share of the
            population aged 70 and over, to fund a range of supportive
            services that assist family and informal caregivers in caring
            for those with dementia at home for as long as possible, thus
            providing a more person-friendly and cost-effective approach to
            institutionalization. AFA urges that an additional $27.2
            million (for a total of $213.2 million) be appropriated in
            fiscal year 2021 to support this important program.
      --RAISE Act Family Caregiver Advisory Board: AFA recommends that the
            Subcommittee allocate $300,000 fund and staff a Family
            Caregiver Advisory Board to develop a national family caregiver
            plan as envisioned under the RAISE Family Caregiver Act.
      --Lifespan Respite Care Program (LRCP): AFA urges the Subcommittee to
            allocate $20 million--a $14 million increase--to LRCP in fiscal
            year 2021. LRCP provides competitive grants to state agencies
            working with Aging and Disability Resource Centers and non-
            profit state respite coalitions and organizations to make
            quality respite care available and accessible to family
            caregivers regardless of age or disability.
        AFA understands that during this time of crisis, Congress is
    working hard to stem fallout of both the human and fiscal toll of
    COVID-19. We are grateful for your efforts and urge that the
    Subcommittee continues making services and supports available to our
    nation's most vulnerable populations- including those older Americans
    with chronic conditions--a priority. We know that through
    determination, sacrifice and resilience, Americans will rise to the
    challenge and take the necessary steps to mitigate the fallout of this
    public health emergency.
        Again, AFA thanks the Subcommittee for the opportunity to present
    our recommendations and looks forward to working with you through the
    appropriations process. Please contact me at cfuschillo@alzfdn.org or
    Eric Sokol, AFA's senior vice president of public policy, at
    esokol@alzfdn.org, if you have any questions or require further
    information.
                                     ______

            Prepared Statement of the American Academy of Allergy,
                              Asthma, & Immunology
        Chairman Blunt, Ranking Member Murray, and Members of the
    Subcommittee, the American Academy of Allergy, Asthma, & Immunology
    (AAAAI) thanks you for the opportunity to submit written testimony on
    the U.S. Department of Health and Human Services (HHS) fiscal year 2021
    appropriations bill. AAAAI respectfully requests the subcommittee to
    include a $6.1 million increase in funding for the Consortium on Food
    Allergy Research (CoFAR) which is within the National Institute of
    Allergy and Infectious Disease (NIAID) at the National Institutes of
    Health (NIH). In addition, we request report language reflecting the
    importance of NIH engaging in trans-NIH research on food allergies.
    Established in 1943, AAAAI is a professional organization with more
    than 7,000 members in the United States, Canada, and 72 other
    countries. This membership includes board certified allergist/
    immunologists, other medical specialists, allied health and related
    healthcare professionals--all with a special interest in the research
    and treatment of patients with allergic and immunological diseases.
                                 food allergies
        Food allergies affect 32 million Americans, including 6 million
    children. Each year, more than 200,000 Americans require emergency
    medical care for allergic reactions to food--equivalent to one trip to
    the emergency room every three minutes.
        The Consortium on Food Allergy Research--CoFAR--was established by
    the National Institutes of Health (NIH) within the National Institute
    of Allergy and Infectious Disease (NIAID) in 2005. Over the following
    15 years, CoFAR discovered genes associated with an increased risk for
    peanut allergy and has also identified the most promising potential
    treatments for egg and peanut immunotherapy, among many other
    accomplishments. Breakthroughs like these, scaled across other major
    food allergies, can significantly improve the quality of life for tens
    of millions of Americans. Its annual $6.1 million budget is a
    relatively small portion within NIH's almost $40 billion budget, yet
    CoFAR has been able to achieve massive strides in the study of food
    allergy prevention and treatment.
        AAAAI enthusiastically supports an increase in funding for CoFAR of
    $6.1 million, annually, bringing its yearly budget up to $12.2 million.
    With its relatively low current level of funding, CoFAR has been able
    to accomplish breakthroughs in the under-researched field of food
    allergies. It is crucial that we continue investing at proportional
    levels given the scale of this condition which impacts 10.8 percent of
    the U.S. population.
        AAAAI also requests that the Subcommittee's report accompanying the
    fiscal year 2021 Labor/HHS appropriation reflects the importance of
    trans-NIH research on food allergies. AAAAI strongly supports the
    following NIAID report language submitted by Sen. Richard Blumenthal
    (D-CT) that acknowledges the groundbreaking work of CoFAR and
    encourages robust investment to expand its research breadth and
    network.
        Food Allergies.-The Committee recognizes the serious issue of food
    allergies which affect approximately 8 percent of children and 10
    percent of adults in the United States. The Committee commends the
    ongoing work of NIAID in supporting a total of 17 clinical sites for
    this critical research, including seven sites as part of the Consortium
    of Food Allergy Research (CoFAR). The Committee includes $12,200,000,
    an increase of $6,100,000, for CoFAR to expand its clinical research
    network to add new centers of excellence in food allergy clinical care
    and to select such centers from those with a proven expertise in food
    allergy research.
        In addition to AAAAI, the CoFAR funding request and report language
    are supported by the American College of Allergy, Asthma & Immunology;
    Allergy & Asthma Network; Asthma and Allergy Foundation of America;
    Food Allergy & Anaphylaxis Connection Team; Food Allergy Research and
    Education; and International FPIES Association.
                           penicillin allergy testing
        AAAAI also wishes to express its appreciation to the subcommittee
    for the inclusion of language regarding the importance of penicillin
    allergy testing in the fiscal year 2020 appropriations bill. The
    discovery of penicillin opened the door to medical innovation allowing
    surgeries to be performed, organs to be transplanted, as well as combat
    wounds and burn victims to be treated. AAAAI encourages more widespread
    and routine performance of penicillin skin testing for patients with a
    history of allergy to penicillin or another beta-lactam drug (e.g,
    ampicillin or amoxicillin). Penicillin allergy testing can accurately
    identify the approximately 9 of 10 patients who, despite reporting a
    history of penicillin allergy, can safely receive penicillin. On behalf
    of the patients we serve, thank you for your leadership in giving
    penicillin allergy testing the attention it deserves.
        Thank you for your consideration of these requests. Please contact
    Sheila Heitzig, JD, MNM, CAE, AAAAI Director of Practice and Policy, at
    sheitzig@aaaai.org if you have any questions or would like additional
    information.
                                     ______

        Prepared Statement of the American Academy of Family Physicians
        On behalf of the American Academy of Family Physicians (AAFP),
    which represents 136,700 family physicians and medical students across
    the country, I urge you to prioritize primary care in your fiscal year
    2021 spending bills. Family physicians are specialists with training to
    provide the full scope of care to patients of all ages and are caring
    for the populations most vulnerable to COVID-19. According to a recent
    survey,\1\ 47 percent of primary care clinicians report they have laid
    off/furloughed staff, two-thirds report that less than half of what
    they do is reimbursable, and 45 percent are unsure if they have the
    funds to stay open for the next four weeks. Primary care practices
    already have financially thin operating margins, The AAFP therefore
    asks that the Committee provide the following appropriations for the
    agencies and programs in the Department of Health and Human Services
    (HHS) which our members and their patients rely on for access to care,
    the research to improve efficacy and safety, essential family physician
    workforce programs, and disease prevention and health promotion
    efforts.
    ---------------------------------------------------------------------------
        \1\ Etz, Rebecca ``Quick COVID-19 Primary Care Survey'' https://
    www.pcpcc.org/2020/04/23/primary-care-covid-19-week-6-survey.
    ---------------------------------------------------------------------------
                    centers for medicare & medicaid services
        We appreciate the swift action of the Congress to enact programs to
    respond to the pandemic and steps taken by HHS and the Centers for
    Medicare & Medicaid Services (CMS), but more support is needed for
    primary care if we wish to maintain a viable healthcare system
    throughout the pandemic and into the future.
        The AAFP urges Congress to codify the Medicare Accelerated and
    Advanced Payment (AAP) program for Part B providers and extend it until
    at least the end of 2020. The abrupt suspension of the AAP for Part B
    providers negatively impacted primary care physicians and hindered
    their ability to maintain practice operations in the midst of this
    pandemic. This mechanism, which was voluntary, provided an ability to
    stem some of the losses that primary care physicians are experiencing.
    While we were concerned with the short repayment deadline and high
    interest rate, we believe that the program was an important component
    of a multi-faceted strategy to get critical support to primary care and
    we urge you to reinstate and extend it.
        The COVID-19 pandemic has underscored that fee-for-service is an
    inappropriate structure to meaningfully resource primary care. This
    public health emergency should accelerate shifts to more sustainable
    models of care such as prospective, global payments for primary care.
    Several models have shown promise by resourcing practices in a
    prospective manner to allow for investments and resources to treat
    their population while balancing the need to deliver specialized care
    based on unique patient needs. Primary Care First, which has been
    approved by HHS for implementation in January 2021 on a limited scale,
    is one such model for achieving this. Congress should direct the
    Secretary of HHS to immediately expand Primary Care First (PCF) as a
    national model and allow all primary care physicians, on a voluntary
    basis, to begin participating in the model beginning January 1, 2021.
        Payment rates in PCF should reflect the final 2020 Medicare
    Physician Fee Schedule (MPFS) rule, in which CMS wisely adopted payment
    changes to address the undervaluation of E/M office/outpatient visit
    services to take effect in 2021. In addition to reopening and expanding
    PCF participation for 2021, the AAFP also recommend that CMS add a 2022
    program start date for physicians who are eager to move into the model
    but require more time to do so. It is time that we fundamentally change
    how primary care is financed by providing prospective payments to all
    primary care physicians participating in Medicare coupled with
    expanding Primary Care First as an appropriate bridge to a new future.
        CMS will require an adequate appropriation for program management
    to meet the current and future needs of the millions of Americans
    enrolled in Medicare, Medicaid, the Children's Health Insurance Program
    and private insurance coverage in the Marketplace. The AAFP asks that
    the Committee provide CMS with at least $3.7 billion for program
    management.
    Immediate Financial Relief for Primary Care
        Congress should authorize an additional $20 billion for HHS'
    Provider Relief Fund or direct HHS to set-aside $20 billion of the
    current Fund specifically for physicians and physician practices. The
    AAFP recommends that HHS prioritize financial support to primary care
    physicians--defined as family medicine, pediatrics, general internal
    medicine and geriatrics--by distributing provider relief funds using
    the foundation of the previously used model as follows:
          Provide a one-time payment that is equal to the total Medicare
            fee-for-service payments distributed to each eligible NPI and/
            or TIN for July through December 2019 multiplied by 3 to
            accommodate for lost revenue from traditional Medicare,
            Medicaid, Medicare Advantage and commercial insurers.
          [Total Medicare FFS Payments (July--December 2019)  3 = Payment
            per primary care physician]
        We believe that building on this existing formula allows HHS to
    quickly and efficiently distribute financial support to primary care
    practices.
                  health resources and services administration
        The AAFP opposes the proposed cuts of $742 million in HRSA's
    discretionary fiscal year 2021 budget proposal and calls for $8.8
    billion for HRSA programs in fiscal year 2021. The AAFP supports the
    bipartisan request of $512 million for the HRSA Title VII health
    professions programs in fiscal year 2021. In particular, we recommend
    $125 million for the Title VII Primary Care Training & Enhancement
    which supports family medicine residencies and departments. These funds
    are needed to support faculty retention, recruit and retain students
    into primary care, develop new curriculum related to pandemic, and meet
    the need to increase the number of full scope primary care physicians
    to care for patients throughout the nation.
        In addition, the AAFP requests that the Committee fund the Title
    VII Diversity Pipeline Programs, Health Careers Opportunity Program,
    Centers of Excellence, Faculty Loan Repayment, and Scholarships for
    Disadvantaged Students at $100 million in fiscal year 2021. The AAFP
    also requests $45.4 million for the Title VII Area Health Education
    Centers to provide grant support for health professions workforce
    development in shortage areas.
        Another important health professions workforce initiative
    administered by HRSA is the Rural Residency Planning and Development
    Program. The AAFP asks that the Committee provide $11 million for the
    HRSA Rural Residency Planning and Development Program to support the
    development of new rural residency programs or Rural Training Tracks in
    family medicine, internal medicine and psychiatry. Most of the 62
    million people living in a rural community or county depend on a family
    physician for their healthcare. The AAFP welcomes this important
    initiative to address rural training challenges as a way to reduce
    healthcare disparities facing rural communities.
        The programs administered by HRSA's Office of Rural Health Policy
    work to reduce the unique obstacles faced by physicians and patients in
    rural areas. The impact of COVID-19 has been and will continue to be
    devastating for the nation, but rural communities and the family
    physicians who care for them are uniquely challenged by this pandemic
    in significant and consequential ways. The AAFP strongly supports an
    increased investment in the Office of Rural Health Policy to support
    the following programs:
      --Rural Outreach Network Grants ($87.5 million), a community-based
            grant program aimed towards promoting rural healthcare services
            by enhancing healthcare delivery in rural communities.
      --Rural Research and Policy Analysis ($11.4 million), the only
            Federal research program entirely dedicated to producing
            policy-relevant research on healthcare and population health in
            rural areas.
      --State Offices of Rural Health ($12.5 million), a grant program is
            to assist states in strengthening rural healthcare delivery
            systems.
      --Rural Communities Opioid Response ($121 million), funds multi-
            sector consortia to enhance their ability to implement and
            sustain SUD/OUD prevention, treatment, and recovery services in
            underserved rural areas.
      --Rural Hospital Flexibility Grants Program ($59 million) to support
            critical access hospitals (CAHs) in quality improvement,
            quality reporting, performance improvement, and benchmarking;
            to assist facilities seeking designation as CAHs; and to create
            a program to establish or expand the provision of rural
            emergency medical services.
        The AAFP commends the Committee for expanding in fiscal year 2020
    the Rural Maternity and Obstetrics Management Strategies (RMOMS)
    Program and urge that it be increased again to $9.9 million. In
    addition, we recommend that the Committee provide $31.9 million for the
    Office for the Advancement of Telehealth, including the telehealth
    Network Grant Program for telehealth funding for the Small Rural
    Hospital Improvement Grant Program as recommended by the National Rural
    Health Association.
        HRSA also administers the National Health Service Corps (NHSC)
    which is plays a vital role in addressing the challenge of regional
    health disparities arising from physician workforce shortages by
    offering financial assistance to meet the workforce needs of
    communities designated as health professional shortage areas. The AAFP
    recommends that the Committee provide $132 million in discretionary
    funding for the NHSC in fiscal year 2021, and we are working with NHSC
    stakeholders to strongly urge Congress to provide a long term extension
    of the program's mandatory trust fund.
        The AAFP supports continued funding for HRSA's Title X Federal
    grant program dedicated to providing women and men with comprehensive
    family planning and related preventive health services. The AAFP
    strongly recommends adequate funding to support Title X clinics which
    offer necessary screening for sexually transmissible infections, cancer
    screenings, HIV testing, and contraceptive care of $286.5 million for
    HRSA's Family Planning Grants in fiscal year 2021.
                   agency for healthcare research and quality
        Expanding the capacity for practice-based research supported by the
    Agency for Healthcare Research and Quality (AHRQ) is particularly
    critical in the face of the changes in medical practice brought on by
    COVID-19. AHRQ-supported research has long been important to providing
    the evidence basis for the comprehensive primary care medicine
    practiced by America's family physicians. While the AAFP initially
    supported the Friends of AHRQ request for fiscal year 2021 of $471
    million in budget authority for AHRQ, which is consistent with the
    fiscal year 2010 level adjusted for inflation, Congress must do more
    than just allow AHRQ to rebuild portfolios terminated as a result of
    years of past cuts.
        The AAFP urges the Committee to provide an additional $71 million
    to AHRQ in the next COVID-19 relief measure to allow the agency to
    assess how physicians, healthcare professionals, hospitals, and health
    systems are responding to COVID-19. It is critical to evaluate the
    impact on healthcare of the rapid expansion of telemedicine during the
    outbreak and to explore strategies to reduce needless administrative
    burden related to telemedicine. Clearly, COVID-19 has had an impact on
    medical practice, and AHRQ is uniquely qualified to research its impact
    on quality, safety, and value of health systems' response. Further,
    AHRQ-support research should examine the role of primary care practices
    and professionals during the pandemic. Since patients have put off
    going to see their family physician during the pandemic for non-
    coronavirus-related needs, the impact on patients from deferred primary
    care must also be studied. In addition, it is imperative that AHRQ
    explore how to alleviate physical and emotional burdens on physicians,
    patients, and communities.
                   centers for disease control and prevention
        In the midst of the COVID-19 pandemic, Congress must reject the
    proposed $693 million in cuts to the Centers for Disease Control and
    Prevention (CDC) in the fiscal year 2021 budget request. The AAFP urges
    that the Committee provide at least $8.3 billion in your fiscal year
    2021 bill for the broad portfolio of prevention and public health
    programs administered by the CDC. Family physicians provide preventive
    care, including routine checkups, health risk assessments, immunization
    and screening tests, and personalized counseling on maintaining a
    healthy lifestyle. The AAFP is one of over 100 organizations supporting
    the 22 by 22 campaign urging Congress to increase funding for the CDC
    by 22 percent by fiscal year 2022.
        The COVID-19 pandemic is changing rapidly and requires different
    strategies to maintain clinical preventive services, including
    immunization. The AAFP supports the important role in of the CDC's
    National Center for Immunization and Respiratory Diseases programs and
    urge that the Committee provide at least $830 million for current
    programs and such sums as are needed when a COVID-19 vaccine is
    approved.
        Although CDC has a high profile role in addressing the COVID-19
    pandemic, it continues to work on a wide variety of unrelated projects
    that are designed to improve the nation's health. The AAFP recently
    promoted to our members the many public awareness campaigns available
    from the CDC's Division of STD Prevention. In February of 2020, we
    provided the CDC's first comprehensive guidelines for the treatment of
    latent tuberculosis infection. So, we were pleased that the fiscal year
    2021 budget proposal included an increase for the CDC HIV/AIDS, Viral
    Hepatitis, Sexually Transmitted Infections and Tuberculosis line to
    $1.55 billion to increase the investment in both domestic HIV/AIDS
    prevention and research and infectious diseases and the opioid
    epidemic. We ask that the Committee provide at least $1.55 billion for
    the CDC HIV/AIDS, Viral Hepatitis, Sexually Transmitted Infections and
    Tuberculosis.
        The AAFP values the CDC Chronic Disease Prevention and Health
    Promotion funding to support our efforts to prevent and control chronic
    diseases and associated risk factors and reduce health disparities. We
    appreciate that the Committee rejected the eliminations proposed in
    fiscal year 2020 for this important activity and increased its
    appropriation to $1.24 billion and encourage the Committee to provide
    $1.25 billion for CDC Chronic Disease Prevention and Health Promotion
    in fiscal year 2021.
        Smoking directly contributes to the deaths of more than 440,000
    Americans annually, and the AAFP has called for bold new initiatives
    are necessary to decrease the harm caused by tobacco and nicotine use.
    We appreciate that the Committee increased funding for CDC Office on
    Smoking and Health (OSH) by $20 million in fiscal year 2020 to $230
    million, and we believe that additional investments in tobacco
    prevention and cessation will save lives and reduce the cost of
    treating tobacco-caused disease. The AAFP recommends that you to
    increase funding for CDC's OSH to $310 million to enable CDC to address
    the new challenges posed by e-cigarettes while continuing to make
    progress reducing the death and disease caused by other tobacco
    products.
        The United States nationally is in the acceleration phase of the
    pandemic. On behalf of our patients and our communities, the AAFP urges
    the Committee to take prompt action on these vital priorities so that
    we can return to our important work of providing preventive medical
    care--including vaccinations, managing chronic diseases, and promoting
    overall population health and wellness in our communities.

        [This statement was submitted by Gary LeRoy, MD, FAAFP, President,
    American Academy of Family Physicians.]
                                     ______

            Prepared Statement of the American Academy of Pediatrics
        The American Academy of Pediatrics (AAP), a non-profit professional
    organization of 67,000 primary care pediatricians, pediatric medical
    subspecialists, and pediatric surgical specialists dedicated to the
    health, safety, and well-being of infants, children, adolescents, and
    young adults, appreciates the opportunity to submit this statement for
    the record in support of strong Federal investments in children's
    health in fiscal year 2021 and beyond. AAP urges all Members of
    Congress to put children first when considering short and long-term
    Federal spending decisions, and supports funding levels for the
    following programs: $50 million for Firearm Injury and Mortality
    Prevention Research at the Centers for Disease Control and Prevention
    (CDC) and National Institutes of Health (NIH), $60 million for the
    Administration for Children and Families (ACF)'s Child Abuse Prevention
    and Treatment Act Plans of Safe Care Grants, $50 million for Pediatric
    Subspecialty Loan Repayment at the Health Resources and Services
    Administration (HRSA), $22.334 million for Emergency Medical Services
    for Children (HRSA), $20 million for the Assistant Secretary for
    Preparedness and Response (ASPR)'s Pediatric Disaster Care Pilot
    Program, $168.5 million for CDC's National Center for Birth Defects and
    Developmental Disabilities, $10 million for Pediatric Mental Health
    Care Access Grants (HRSA), $8 million for Screening and Treatment for
    Maternal Depression (HRSA), and $226 million for Global Immunizations
    at CDC, as well as report language for Research on Adolescent E-
    Cigarette Cessation at NIH.
         firearm injury and mortality prevention research (cdc and nih)
        The AAP is tremendously appreciative of and applauds Congress for
    providing $25 million total, split evenly between CDC and NIH, for
    firearm injury and mortality prevention research in fiscal year 2020.
    federally funded public health research has a proven track record of
    reducing public health-related deaths, whether from motor vehicle
    crashes, smoking, or Sudden Infant Death Syndrome. This same approach
    should be applied to increasing gun safety and reducing firearm-related
    injuries and deaths, including suicides, and CDC and NIH research will
    be as critical to that effort as it was to these previous public health
    achievements. The dearth of research on how best to prevent firearm-
    related morbidity and mortality makes it difficult to address this
    public health problem.
    Fiscal Year 2021 Request: $50 million total ($25 million to both CDC
            and NIH);
            Fiscal Year 2020 Level: $25 million total ($12.5 million to
            both CDC and NIH).
               child abuse prevention and treatment act (capta)
                        plans of safe care grants (acf)
        The AAP appreciates the continued $60 million designated for CAPTA
    Plans of Safe Care Grants in fiscal year 2020. CAPTA is the only
    Federal law dedicated to primary prevention of child abuse. CAPTA
    requires states to refer families to child welfare services if an
    infant is identified at birth as affected by prenatal substance
    exposure, withdrawal symptoms, or a Fetal Alcohol Spectrum Disorder.
    Plans of safe care follow the best evidence for treating maternal
    substance use, including early identification and screening,
    appropriate treatment, consistent hospital screening of mothers and
    their infants, and information sharing across systems. These expanded
    requirements represent an opportunity to address the child health
    impact of the opioid epidemic.
    Fiscal Year 2021 Request: $60 million dedicated to Plans of Safe Care;
            Fiscal Year 2020 Level: $60 million dedicated to Plans of Safe
            Care.
              pediatric subspecialty loan repayment program (hrsa)
        The AAP requests $50 million in initial funding for the Pediatric
    Subspecialty Loan Repayment Program, a Title VII health professions
    program to improve access to care for children with special healthcare
    needs by offering loan repayment to pediatric subspecialists and child
    mental health providers who agree to serve in an underserved area. This
    program was recently reauthorized for 5 years as part of the
    Coronavirus Aid, Relief, and Economic Security (CARES) Act. The United
    States' supply of pediatric subspecialists is inadequate to meet
    children's health needs. Many children must wait more than 3 months for
    an appointment with a pediatric subspecialist, and approximately 1 in 3
    children must travel 40 miles or more to receive care from a
    pediatrician certified in certain subspecialties such as developmental
    behavioral pediatrics.
    Fiscal Year 2021 Request: $50 million; Fiscal Year 2020 Level: Never
            funded.
                 emergency medical services for children (hrsa)
        The AAP urges the committee to maintain $22.334 million in funding
    for the Emergency Medical Services for Children (EMSC) Program in
    fiscal year 2021. EMSC is the only Federal program that focuses
    specifically on improving the pediatric components of the emergency
    medical services (EMS) system. EMSC aims to ensure state of the art
    emergency medical care is available for the ill and injured child or
    adolescent, pediatric services are well integrated into an EMS system
    backed by optimal resources, and that the entire spectrum of emergency
    services is provided to all children and adolescents no matter where
    they live.
    Fiscal Year 2021 Request: $22.334 million; Fiscal Year 2020 Level:
            $22.334 million.
                  pediatric disaster care pilot program (aspr)
        The Academy urges the Subcommittee to provide $20 million to ASPR's
    National Disaster Medical System to continue and expand the Pediatric
    Disaster Care pilot program. This funding will build on lessons learned
    and expand local and statewide capabilities to develop a regional and
    nationwide capability to respond to the needs of pediatric patients in
    the ongoing COVID-19 pandemic and any future public health emergency.
    The two Pediatric Disaster Centers of Excellence in California and Ohio
    funded under this pilot are addressing appropriate planning and
    response capabilities that support the specific needs of children
    during public health emergencies and disasters, such as mass casualty
    events. As the nation grapples with the impacts of the COVID-19
    pandemic, including on children, the importance of this program and
    ensuring increased, continued funding cannot be understated.
    Fiscal Year 2021 Request: $20 million (also the level of the
            President's Fiscal Year 2021 Budget Request); Fiscal Year 2020
            Level: $6 million.
     national center for birth defects and developmental disabilities (cdc)
        The AAP requests $168.5 million for fiscal year 2021 for the
    National Center for Birth Defects and Developmental Disabilities
    (NCBDDD). According to the CDC, birth defects affect 1 in 33 babies and
    are a leading cause of infant death in the United States. NCBDDD
    conducts important research on fetal alcohol syndrome, infant health,
    autism, attention deficit and hyperactivity disorders, congenital heart
    defects, and other conditions like Tourette Syndrome, Fragile X, Spina
    Bifida and Hemophilia. NCBDDD supports extramural research in every
    State and has played a crucial role in the country's response to the
    Zika virus. Furthermore, staff from NCBDDD are assisting in the
    nation's response to the ongoing COVID-19 public health emergency.
    Fiscal Year 2021 Request: $168.5 million; Fiscal Year 2020 Level:
            $160.81 million.
               pediatric mental health care access grants (hrsa)
        The AAP appreciates the $10 million in fiscal year 2020 and urges
    Congress to maintain funding at $10 million in fiscal year 2021 for
    Pediatric Mental Health Care Access Grants, which support the
    development of new statewide or regional pediatric mental healthcare
    telehealth access programs, as well as the improvement of already
    existing programs. Research shows pervasive shortages of child and
    adolescent mental/behavioral health specialists throughout the U.S.
    Integrating mental health and primary care has been shown to
    substantially expand access to mental healthcare, improve health and
    functional outcomes, increase satisfaction with care, and achieve costs
    savings.
    Fiscal Year 2021 Request: $10 million; Fiscal Year 2020 Level: $10
            million.
             screening and treatment for maternal depression (hrsa)
        The AAP thanks the committee for providing $5 million in fiscal
    year 2020 for the Screening and Treatment for Maternal Depression grant
    program, which helps to establish, improve, or maintain programs that
    increase screening, assessment, and treatment services for maternal
    depression for women who are pregnant or have given birth within the
    preceding 12 months. Maternal depression can lead to increased costs of
    medical care, inappropriate medical care, child abuse and neglect,
    discontinuation of breastfeeding, family dysfunction, and may adversely
    affect early brain development in children.
    Fiscal Year 2021 Request: $8 million; Fiscal Year 2020 Level: $5
            million.
               global immunization--polio and measles/other (cdc)
        Vaccines are one of the most cost-effective and successful public
    health solutions available, saving the lives of two to three million
    children each year. The CDC provides countries with technical
    assistance and disease surveillance support, with a focus on
    eradicating polio, reducing measles deaths, and strengthening routine
    vaccine delivery. Global mortality attributed to measles, one of the
    top five diseases killing children, declined by 79 percent between 2000
    and 2015 thanks to expanded immunization, saving an estimated 20.3
    million lives. A global immunization campaign has reduced the number of
    polio cases by more than 99 percent since 1988. However, until the
    world is free of measles and polio, all children, even those in the
    United States, remain at risk. In 2019, there were 1,282 individual
    confirmed measles cases in 31 states. This was the highest number of
    confirmed cases reported nationally since 1992, despite measles being
    declared eliminated in the United States in 2000. This outbreak was in
    part due to unvaccinated travelers importing the virus from parts of
    the world where it remains common. Only two countries had indigenous
    transmission of wild polio virus in 2018: Afghanistan and Pakistan. We
    must complete polio eradication or face a potential global resurgence,
    which could result in as many as 200,000 cases of polio annually within
    a decade.
    Fiscal Year 2021 Request: $226 million ($176 million for Polio and $50
            million for Measles/Other); Fiscal Year 2020 Level: $226
            million ($176 million for Polio and $50 million for Measles/
            Other).
              research to help adolescents quit e-cigarettes (nih)
        The rise of JUUL and similar pod-based e-cigarettes has fueled
    continued dramatic increases in adolescent e-cigarette use, with recent
    surveys finding more than 5 million middle and high school students are
    current users. The AAP urges Congress to include report language to
    encourage research at the National Cancer Institute on adolescent e-
    cigarette cessation as there is virtually no data on how to treat an
    adolescent with e-cigarette dependence, and no randomized controlled
    trials specific to adolescent e-cigarette cessation have been conducted
    to date. The pediatric community is in urgent need of research to
    conclusively identify the most effective tobacco cessation modalities
    for adolescents addicted to e-cigarettes.
        Fiscal Year 2021 Request: Report language--``Youth Tobacco
    Cessation.--The committee is concerned about the increase in youth e-
    cigarette addiction and the significant lack of research to inform
    effective therapies to help youth quit. The United States Preventive
    Services Task Force has determined that there is not sufficient
    evidence to recommend adolescent use of existing pharmacological
    tobacco cessation treatments that are currently approved for adults.
    There is great need for additional clinical trials and other research
    to determine if new or existing pharmacological treatments, behavioral
    interventions, or combination therapies have the potential to benefit
    adolescents in quitting cigarettes and other forms of tobacco,
    including e-cigarettes.''
        There are many ways Congress can help meet children's needs and
    protect their health and well-being. Adequate funding for children's
    health programs is one of them. The American Academy of Pediatrics
    looks forward to working with Members of Congress to prioritize the
    health of our nation's children in fiscal year 2021 and beyond. If we
    may be of further assistance, please contact the AAP Department of
    Federal Affairs, Patrick Johnson at pjohnson@aap.org. Thank you for
    your consideration.

        [This statement was submitted by Sally Goza, MD, FAAP, President,
    American Academy of Pediatrics.]
                                     ______

             Prepared Statement of the American Alliance of Museums
        Chairman Blunt, Ranking Member Murray, and members of the
    subcommittee, thank you for the opportunity to submit this testimony.
    My name is Laura Lott, and I am President and CEO of the American
    Alliance of Museums (AAM). I urge you to provide the Office of Museum
    Services (OMS) within the Institute of Museum and Library Services
    (IMLS) with at least $42.7 million for fiscal year 2021, the amount
    approved by the House of Representatives last year.
        I want to express the museum field's gratitude for the $38.5
    million in funding for OMS in fiscal year 2020, and we applaud the
    bipartisan group of 41 Senators who wrote to you in support of fiscal
    year 2021 OMS funding. This small program is a vital investment in
    protecting our nation's cultural treasures, educating students and
    lifelong learners alike, and bolstering local economies. The American
    Alliance of Museums, representing more than 35,000 individual museum
    professionals and volunteers, institutions of all types, and corporate
    partners serving the museum field, stands for the broad scope of the
    museum community.
        In addition to regular appropriations, we request at least $6
    billion in supplemental appropriations for IMLS-Office of Museum
    Services to administer specifically for nonprofit museums in COVID-19
    economic relief to provide emergency assistance.\*\ This would include
    assisting museums in developing and sharing distance learning content,
    as well as pandemic recovery planning and implementation. (Please see
    this request letter from more than 50 national, regional, and state
    museum associations.) Museums will be vital to our nation's recovery
    from this pandemic, and after sudden and long-term closures, they will
    require financial assistance to reopen, maintain their staffs, provide
    educational programs to communities, and assist in rebuilding local
    tourism economies.
    ---------------------------------------------------------------------------
        \*\ The $6 billion figure is a conservative estimate based on
    budget numbers from several museum associations and data from the
    Oxford Economics/AAM's ``Museums as Economic Engines'' study. The
    American Alliance of Museums calculates that museums are losing at
    least $33 million a day due to closures as a result of COVID-19, will
    be in desperate need of significant Federal support, and that the U.S.
    Congress needs to include at least $6 billion for nonprofit museums in
    economic relief legislation to provide emergency assistance through
    December. The study shows the museum field directly employs 372,100
    people and generates $15.9 billion in income each year. It costs $1.3
    billion to keep 370,000 people employed per month so the estimated cost
    through December 2020 is approximately $6 billion minus the 2 months of
    expected assistance from SBA-related loan programs.
    ---------------------------------------------------------------------------
        Even as museums are experiencing closures and significant losses in
    revenue, they are meeting an increase in demand for their services and
    safeguarding and supporting their communities. They are contributing to
    the ongoing education of our country's children by providing free
    lesson plans, online learning opportunities, and drop-off learning kits
    to teachers and families. They are using their outdoor spaces to grow
    and donate produce to area food banks and are maintaining these spaces
    for individuals to safely relax, enjoy nature, and recover from the
    mental health impacts of social isolation. They are donating their PPE
    and scientific equipment to fight COVID-19, and providing access to
    child care and meals to families of healthcare workers and first
    responders. In the midst of financial distress, they are even raising
    funds for community relief. Museums are pivotal to our nation's ability
    to manage through the pandemic and recover from it as our nation opens
    back up.
        Museums are a robust and diverse business sector, including African
    American museums, aquariums, arboreta, art museums, botanic gardens,
    children's museums, culturally-specific museums, historic sites,
    historical societies, history museums, maritime museums, military
    museums, natural history museums, planetariums, presidential libraries,
    public gardens, railway museums, science and technology centers, and
    zoos.
        Museums are economic engines and job creators: According to Museums
    as Economic Engines: A National Report, U.S. museums support more than
    726,000 jobs and contribute $50 billion to the U.S. economy per year.
    For example, the total financial impact that museums have on the
    economy in the state of Missouri is $852 million, including 13,653
    jobs. For Washington, it is a $1.01 billion impact supporting 14,145
    jobs. Museums spend more than $2 billion yearly on education activities
    and the typical museum devotes 75 percent of its education budget to K-
    12 students.
        IMLS is the primary Federal agency responsible for helping museums
    connect people to information and ideas. Its Office of Museum Services
    (OMS) supports all types of museums by awarding grants that help them
    better serve their communities. The 2018-2022 IMLS strategic plan
    focuses on promoting lifelong learning, strengthening the capacity of
    museums and libraries to serve their communities, increasing access to
    information and ideas, and strategically aligning resources to maximize
    public value.
        OMS awards grants in every state to help museums digitize, enhance,
    and preserve collections; provide teacher professional development; and
    create innovative, cross-cultural, and multi-disciplinary programs and
    exhibits for schools and the public. Congress reauthorized IMLS at the
    end of 2018, by enacting the Museum and Library Services Act of 2018
    (Public Law 115-410). This legislation was adopted with widespread
    bipartisan support, including unanimous consent in the Senate and a
    vote of 331 to 28 in the House, showing Congress' renewed support for
    the agency's programs and commitment to its funding. IMLS grants to
    museums are highly competitive and awarded through a rigorous peer-
    review process.
        In addition to the dollar-for-dollar match generally required of
    museums, grants often spur more giving by private foundations and
    individual donors. But current funding allows the agency to fund only a
    small fraction of the highly rated grant applications it receives. For
    example, in fiscal year 2019, the OMS received 938 applications
    requesting nearly $134 million. Despite this funding shortfall the need
    has never been greater: museum attendance prior to the pandemic had
    increased, collections are subject to increasing risk, and museum staff
    members need professional development in conservation, education, and
    technology.
        The Inspire! Grants for Small Museums program, designed to
    encourage small institutions to apply for OMS funding, generated 202
    applications in its first year. OMS awarded 30 grants totaling $1.1
    million, representing 15 percent of the applicants and demonstrating a
    need for continued support for the nation's small museums. In 2014,
    IMLS launched Museums for All, a national access initiative. Today,
    more than 500 participating museums offer deeply discounted admission
    to visitors who receive Supplemental Nutrition Assistance Program
    benefits. More than 1 million people visited a Museums for All museum
    in 2019 and more than 2.5 million visits have occurred since 2014.
        Here are just a few examples of how OMS helps museums better serve
    their communities:
        In 2018, The University of Missouri in Saint Louis received a
    $49,979 National Leadership Grant to support a leadership team from the
    university to partner with nine cultural heritage organizations,
    including museums, to prototype a collaborative model for internships
    that offers peer support and fosters mentorship to students from
    faculty and site coordinators. The project team will bring students,
    faculty, and site supervisors together for a project team kick-off
    meeting to design a micro-internship program allowing diverse students
    to participate in 2-3 week fully-paid internships at heritage sites
    across the U.S. For two to three weeks, six to ten students will work
    in pairs at preselected internship sites with the support of mentors.
    The project activities will result in a curriculum and guide for future
    micro-internships that attract diverse students into the heritage
    museum workforce with additional opportunities and added career-
    building potential.
        In 2019, the Missouri History Museum in St. Louis was awarded a
    $250,000 Museums for America Office of Museum Services grant to
    process, survey, and make publicly accessible the 1,894 objects in its
    Charles A. Lindbergh Collection. Objects include diverse personal
    items, gifts associated with Lindbergh's 1927 transatlantic flight and
    publicity tours, and wedding gifts presented to Charles and his wife
    Anne. The museum will hire two collections specialists and one special
    projects photographer, overseen by its collections manager, to perform
    the work. Conservators specializing in objects, paintings, paper, and
    textiles will perform detailed conservation surveys. Full records with
    digitized images will be made publicly accessible via the museum's
    online collections portal. The project will be the first phase of an 8-
    year, multistage collections initiative culminating in 2027 with the
    centennial of Lindbergh's legendary transatlantic flight.
        In 2019, the Contemporary Art Museum St. Louis in Missouri was
    awarded a $193,753 Museums for America grant to expand its ArtReach
    programs in response to the needs of St. Louis students, teachers, and
    schools. The museum will provide arts education opportunities for
    middle and high school students by partnering with nearby schools
    through multi-week engagements with teaching artists, hosting drop-in
    workshops introducing contemporary art practices, and organizing field
    trips to the museum. The project will also include mentoring for art
    teachers in partner schools and a portfolio day to prepare high school
    students for college admissions processes. With the guidance of an
    evaluation consultant, the museum will measure success using formative
    and summative evaluation techniques, and develop tools to consistently
    track and analyze project activities.
        In 2019, the Children's Museum of Tacoma, Washington, was awarded a
    $186,567 National Leadership Grant to develop and disseminate an
    evaluation tool that enables museums to measure the impact their
    programming on military families. The museum will work with a variety
    of partner organizations, including FRIENDS National Center for
    Community-Based Child Abuse Prevention, the University of Kansas Center
    for Public Partnerships and Research, and the Army Analytics Group, to
    adapt two existing frameworks for use by museums. The project partners
    will test iterations of the tool, which will be informed by focus
    groups with military families. The museum will disseminate project
    resources to support the evaluation of programming tailored for
    military families by launching a web page with explanatory information,
    downloadable content, and a recorded webinar. The museum and its
    project partners will share project results through presentations at
    national conferences.
        In 2019, the Wing Luke Museum of the Asian Pacific American
    Experience in Seattle, Washington, was awarded a $136,134 Museums for
    America grant to draw on its collections to supplement the Asian
    Pacific American (APA) history curriculum in Washington state schools.
    Working with a committee of local educators, special education
    teachers, and disability advocates, the museum will research, write,
    and compile a new curriculum exploring the culture, immigrant and
    refugee history, and APA experiences in the state. The curriculum will
    align with state standards and address one grade at each level-
    elementary, middle, and high school. Each lesson will be available
    through an online web portal and will include multisensory lessons and
    components that address a variety of learning styles. Additional
    project activities will include teacher training opportunities, school
    tours at the museum based on the curriculum, and a professional
    evaluation.
        In 2019, Imagine Children's Museum in Everett, Washington, was
    awarded a $154,448 Museums for America grant to work with community
    partners to develop the Positive Futures program to support resilience
    in children who have experienced trauma. The program will focus on two
    populations--those in kinship care and children who have an
    incarcerated parent or loved one. A taskforce of museum staff and
    community partners will incorporate the experiences learned in a
    previous pilot program by adding elements to specifically address
    social emotional and core life skills. Using playful learning formats,
    the museum will present monthly programs for 12-15 families per group,
    and take-home materials will build on the learning at the museum
    between sessions. Working with an evaluation consultant the project
    team will measure child learning and refine the programs based on
    feedback from caregivers. The museum will also develop a playbook for
    other children's museums interested in offering similar programs for
    their communities.
        In closing, I highlight recent national public opinion polling that
    shows that 95 percent of voters would approve of lawmakers who acted to
    support museums and 96 percent want Federal funding for museums to be
    maintained or increased. Museums have a profound positive impact on
    society. If I can provide any additional information, I would be
    delighted to do so. Thank you again for the opportunity to submit this
    testimony.

        [This statement was submitted Laura L. Lott, President and CEO,
    American
    Alliance of Museums.]
                                     ______

       Prepared Statement of the American Association for Dental Research
        On behalf of the American Association for Dental Research (AADR), I
    am pleased to submit testimony describing AADR's funding requests for
    fiscal year 2021, which include at least $44.7 billion for the National
    Institutes of Health and--within NIH--$512 million for the National
    Institute of Dental and Craniofacial Research (NIDCR).
        AADR is grateful to Congress for providing critical funding
    increases for most federally funded research, including for NIH and
    NIDCR, in previous years' funding cycles. We recognize that each year
    Congress is faced with difficult funding decisions. Yet, lawmakers
    continue to support these agencies and programs, signaling that
    lawmakers both recognize and value the role that scientific research
    and public health programs provide in improving the health and well-
    being of the nation.
        Looking ahead to fiscal year 2021, AADR recognizes the challenges
    that Congress will face during the appropriations process. Not only
    will appropriators navigate fiscal 2021 appropriations in the midst of
    the emergency response to COVID-19, but they will also need to consider
    increasing the amount of funding available to non-defense discretionary
    (NDD) programs in fiscal 2021. Current budget legislation provides only
    a $5 billion increase to divide among all NDD programs. While previous
    years' increases have helped make up lost purchasing power among
    Federal agencies, we cannot afford to slow progress by underfunding
    Federal agencies this coming year. We must continue to prioritize
    Federal research, which improves the health of Americans and supports
    economic growth, or we risk sending our country backward.
        NIDCR-the largest institution dedicated exclusively to research to
    improve dental, oral and craniofacial (skull and face) health-provides
    more than 700 competitive research and institutional training grants to
    around 200 U.S. universities, hospitals, research institutions and
    small businesses. The Institute also cultivates a strong and diverse
    workforce by funding more than 300 aspiring scientists through
    individual research training and career development awards. NIH's reach
    expands even farther-with every state and almost every congressional
    district earning a share of NIH's investment in biomedical research.\1\
    In fiscal year 2017, it is estimated that NIH's extramural funding
    generated approximately $68.8 billion in economic output nationwide.\2\
    ---------------------------------------------------------------------------
        \1\ United for Medical Research report on NIH's role in sustaining
    the U.S. Economy. 2018 Update. http://www.unitedformedicalresearch.com/
    advocacy_reports/nihs-role-in-sustaining-the-u-s-economy-2018-update/.
        \2\ NIH's Role In Sustaining The U.S. Economy: 2018 Update Authored
    by Dr. Everett Ehrlich, United for Medical Research, 2018. http://
    www.unitedformedicalresearch.com/wp-content/uploads/2017/03/NIH-Role-
    in-the-Economy-fiscal year 2016.pdf.
    ---------------------------------------------------------------------------
        The economic influence of NIH and NIDCR, driven by their research
    portfolios, reveals how vital these Federal research agencies are to
    our country's progress and advancement; importantly, they are having a
    significant impact on the health and well-being of the American people.
        Among AADR's requests to the Labor-HHS, Education and Related
    Agencies Subcommittee for the coming fiscal year is to fund NIDCR at
    $512 million. NIDCR is leading to ``a world where dental, oral and
    craniofacial health and disease are understood in the context of the
    whole body,'' \3\--an aim outlined in NIDCR's 2030 strategic visioning
    initiative-and AADR has appreciated the regular increases to NIDCR's
    budget over the past several years. While Congress' support for NIDCR
    has allowed the Institute to expand into research areas, including
    regenerative medicine, salivary diagnostics and the oral microbiome,
    NIDCR's funding has not kept pace with the increases provided to NIH.
    Indeed, NIDCR needs to expand its research portfolio in the public
    interest to understand how coronavirus locates in salivary and nasal
    secretions (craniofacial origin) to spread among people as well as how
    to create lasting immunity, or at least temporary resistance. The
    requested fiscal year 2021 amount would bring NIDCR funding into
    alignment with the overall NIH request and allow NIDCR to build on its
    myriad successes in fulfilling its mission to improve dental, oral and
    craniofacial health.
    ---------------------------------------------------------------------------
        \3\ https://www.nidcr.nih.gov/research/research-priorities-nidcr-
    2030.
    ---------------------------------------------------------------------------
        Oral health-too often considered in isolation-is integral to
    overall health. The research being conducted at, and supported by,
    NIDCR impacts the lives of millions of Americans. Most readily apparent
    in someone's day-to-day life, oral health can affect activities that
    may be taken for granted: the ability to eat, drink, swallow, smile,
    communicate or maintain proper nutrition. The oral cavity can also
    serve as a window into other potential health issues like COVID-19 and
    as a site for important scientific discovery.
        Among its contributions, NIDCR-supported research helps reduce the
    societal costs of dental care and enhance the evidence base for the
    dental profession. Additionally, the Institute is supporting research
    that will address some of the day's most pressing public health
    concerns, including non-opioid treatments for pain and the oral health
    effects of e-cigarettes.
        Beyond the broader, highly relevant public health issues, NIDCR is
    also improving the lives of patients across the country. NIDCR's
    portfolio encompasses a wide variety of basic, translational and
    clinical research and research training related to craniofacial
    disorders. For example, NIDCR research into craniofacial disorders aims
    to understand the underlying biology of craniofacial development,
    translate knowledge into treatment, and invest in well-known genetic
    disorders, such as cleft lip and palate, and rare diseases, such as
    Behcet's Disease, Fibrous Dysplasia and Cleidocranial Dysplasia. These
    and other diseases and conditions affecting or connected to the
    craniofacial tissues and organs will be addressed to improve quality of
    life, reduce physical debilitation, and mitigate a major financial and
    social burden.
        The Institute's research examines the mechanisms underlying these
    conditions and seeks to develop new treatments and therapies for
    patients. Among NIDCR's contributions in this space is the FaceBase
    Consortium, which began in 2009 with 11 research and technology grants
    that seek to compile the biological instructions to both construct
    parts of the human face and define the genetics underlying
    developmental disorders, such as cleft lip and palate. Now in its third
    phase, FaceBase is helping to achieve its goal of generating and
    disseminating datasets to facilitate research; it is a one-stop shop
    for researchers, clinicians and patients containing extensive data on
    facial development.
        The possibilities for NIDCR to use dental, oral and craniofacial
    research to improve health and well-being is vast. We believe many of
    these opportunities will be highlighted in the forthcoming release of
    the U.S. Surgeon General's Report on Oral Health, a much-needed update
    to the seminal ``Oral Health in America'' report from 2000. NIDCR is
    the lead Federal agency working with the Surgeon General to produce the
    report, which will document the progress in oral health since 2000 and
    convey a vision for the future, including identifying challenges and
    opportunities for research. The 2000 report shifted perspectives among
    the public and policymakers by showing that oral health goes beyond
    healthy teeth and gums and that it is essential to our general health
    and well-being. We believe the 2020 report can have a similar impact.
        As a research-centered association, AADR recognizes that public
    health programs and Federal research are complementary; a discovery in
    one area benefits another. Therefore, AADR encourages Congress, in
    addition to supporting NIH and NIDCR, to support all Federal research-
    from discovery to care delivery-in fiscal year 2021. Complementing our
    NIH requests, our members urge you to provide $29 million for the CDC's
    Division of Oral Health, $41 million for the Title VII Health Resources
    and Services Administration (HRSA) programs that train the dental
    health workforce, $471 million for the Agency for Healthcare Research
    and Quality (AHRQ), and $189 million for the National Center for Health
    Statistics (NCHS).
        Finally, AADR implores Congress to use this opportunity and
    momentum to provide dental, oral and craniofacial research with the
    resources it needs to continue making a difference to all our citizens.
        Thank you for the opportunity to submit this testimony. We stand
    ready to assist the Congress in any way we can and to answer any
    questions you may have.

        [This statement was submitted by Mark C. Herzberg, D.D.S., Ph.D.,
    President, Board of Directors, American Association for Dental
    Research.]
                                     ______

     Prepared Statement of the American Association of Colleges of Nursing
             strengthening the current and future nursing workforce
        On behalf of the American Association of Colleges of Nursing
    (AACN), we would like to thank the Subcommittee for its leadership and
    continued support of nursing education, the nursing profession, and
    nursing research. AACN is the national voice for academic nursing,
    proudly representing more than 840 member schools, 543,000 nursing
    students, and more than 45,000 faculty across the country. As we work
    to combat current public health challenges, such as COVID-19, ensuring
    a robust nursing pipeline, now and in the future, requires a strong and
    sustained Federal investment. For fiscal year 2021, AACN respectfully
    requests your continued investment in America's health by providing at
    least $278 million for the Nursing Workforce Development programs
    (Title VIII of the Public Health Service Act [42 U.S.C. 296 et seq.]
    administered by HRSA), at least $44.7 billion for NIH, and at least
    $182 million for the National Institute of Nursing Research (NINR).
    The Growing Nursing Workforce Demand
        Nurses make up the largest sector of the healthcare workforce, with
    more than four million Registered Nurses (RNs) and Advanced Practice
    Registered Nurses (APRNs); including Nurse Practitioners (NPs),
    Certified Registered Nurse Anesthetists (CRNAs), Certified Nurse-
    Midwives (CNMs) and Clinical Nurse Specialists (CNSs), treating
    patients across the entire life span and educating the next generation
    of healthcare providers.\1\ These nurse educators, students, and
    practitioners are leaders within their institutions and communities and
    are on the frontlines as we address public health challenges, including
    COVID-19.
    ---------------------------------------------------------------------------
        \1\ National Council of State Boards of Nursing. (2020). Active RN
    Licenses: A profile of nursing licensure in the U.S. as of March 18,
    2020. Retrieved from: https://www.ncsbn.org/6161.htm.
    ---------------------------------------------------------------------------
        As we address COVID-19, we have witnessed the dire need for
    additional nurses. This demand is only expected to grow as we continue
    to combat this pandemic and address the healthcare needs of our
    communities, especially in rural and underserved areas. According to
    the Bureau of Labor Statistics, the projected RN Workforce demand is
    expected to increase 12 percent by 2028, representing a call for an
    additional 371,500 nurses.\2\ Demand for most APRNs is expected to grow
    by 26 percent.\3\
    ---------------------------------------------------------------------------
        \2\ U.S. Bureau of Labor Statistics. (2019). Occupational Outlook
    Handbook- Registered Nurses. Retrieved from: https://www.bls.gov/ooh/
    healthcare/registered-nurses.htm.
        \3\ U.S. Bureau of Labor Statistics. (2019). Occupational Outlook
    Handbook- Nurse Anesthetists, Nurse Midwives, and Nurse Practitioners.
    Retrieved from: https://www.bls.gov/ooh/healthcare/nurse-anesthetists-
    nurse-midwives-and-nurse-practitioners.htm.
    ---------------------------------------------------------------------------
        While nursing schools across the country are working to meet the
    rising demand and educate all qualified applicants interested in the
    profession, they are often stymied by a shortage of nursing school
    faculty. Though AACN reported a 3.7 percent enrollment increase in
    entry-level baccalaureate nursing programs in 2018, this increase is
    not sufficient to meet the projected demand for nursing services,
    including the need for more nurse faculty, researchers, and primary
    care providers.\4\ That is why enhancing and preserving Federal
    resources, such as Title VIII Nursing Workforce Development Programs
    and NINR, are essential to bridging this chasm between supply and
    demand, and ensuring we have an adequate nursing workforce ready to
    respond at a moment's notice and positively impact healthcare outcomes
    for all Americans.
    ---------------------------------------------------------------------------
        \4\ American Association of Colleges of Nursing. (2019). Nursing
    Shortage Fact Sheet as of April, 2019. Page 2. Retrieved from https://
    www.aacnnursing.org/Portals/42/News/Factsheets/Nursing-Shortage-
    Factsheet.pdf.
    ---------------------------------------------------------------------------
    Nursing Workforce Investments: Ensuring Healthcare Access
        As we have seen in efforts to combat the COVID-19 pandemic, a well-
    educated nursing workforce is essential to ensuring the safety and
    health of our Nation. The Title VIII Nursing Workforce Development
    programs represent the largest dedicated Federal funding stream to
    nursing education and the workforce. These indispensable programs
    consistently and continually sustain the supply and distribution of
    highly-educated nurses by strengthening nursing education at all
    levels, from entry-level preparation through graduate study. Through
    these indispensable Federal investments, the profession's ability to
    serve America's patients continues in all communities, especially those
    most in need.
                Education and Sustaining a Strong Nursing Workforce:
        Each Title VIII Nursing Workforce Development Program provides a
    unique and crucial mission to support nursing education and the
    profession. Together, these programs offer opportunities to help
    educate nurses, address patient demand, and respond to any unforeseen
    challenges, such as COVID-19. For example, the Advanced Nursing
    Education (ANE) programs increase the number of APRNs in the primary
    care workforce and supported more than 9,100 students in Academic Year
    2018-2019 alone.\5\ The ANE programs support students studying to
    become APRNs, and other nurses requiring a master's or doctoral degree,
    by providing Federal support, as well as faculty development, to ensure
    a robust nursing workforce. Other examples include the Nurse Faculty
    Loan Program (NFLP) and Nursing Workforce Diversity (NWD) programs. In
    Academic Year 2018-2019, the NFLP awarded 80 grants to schools that
    supported 2,277 graduate nursing students, which effectively increases
    the number of nurse educators.\6\ In the same academic year, the NWD
    program awarded grants supporting 11,067 nursing students from
    disadvantaged backgrounds, which supports the critical need of
    recruiting culturally and economically diverse individuals into nursing
    to better serve our nation's diverse patient population.\7\
    ---------------------------------------------------------------------------
        \5\ Department of Health and Human Services fiscal year 2021 Health
    Resources and Services Administration Justification of Estimates for
    Appropriations Committees. Pages 141-143. https://www.hrsa.gov/sites/
    default/files/hrsa/about/budget/budget-justification-fy2021.pdf
        \6\ Department of Health and Human Services fiscal year 2021 Health
    Resources and Services Administration Justification of Estimates for
    Appropriations Committees. Page 154. https://www.hrsa.gov/sites/
    default/files/hrsa/about/budget/budget-justification-fy2021.pdf.
        \7\ Department of Health and Human Services fiscal year 2021 Health
    Resources and Services Administration Justification of Estimates for
    Appropriations Committees. Page 146. https://www.hrsa.gov/sites/
    default/files/hrsa/about/budget/budget-justification-fy2021.pdf.
    ---------------------------------------------------------------------------
        To ensure the stability of our nursing workforce, we request at
    least $278 million for Title VIII Nursing Workforce Programs.
    From Research to Reality: Nursing Science Protects Americans' Health
        Scientific research and discovery are key to providing the best
    care possible. As one of the 27 Institutes and Centers at NIH, NINR
    plays a fundamental role in improving care and is on the cutting edge
    of new innovations impacting how nurses are educated and how they
    practice.
        A prime example of this groundbreaking scientific work is an NINR-
    funded study that has identified a protein that could be used to detect
    mild traumatic brain injuries through a simple blood test.\8\ Annually,
    millions of Americans experience these mild traumatic brain injuries
    and this effective, fast-testing method could revolutionize diagnosis
    and lower costs by eliminating the need for costly and time intensive
    brain imaging.\9\
    ---------------------------------------------------------------------------
        \8\ National Institute of Nursing Research. (2020). Research
    Highlights. Retrieved from: https://www.ninr.nih.gov/
    researchandfunding/researchhighlights#highlight-1.
        \9\ National Institute of Nursing Research. (2020). Research
    Highlights. Retrieved from: https://www.ninr.nih.gov/
    researchandfunding/researchhighlights#highlight-1.
    ---------------------------------------------------------------------------
        This is just one of countless examples showcasing the innovative
    and pioneering work that nurse scientists are discovering through the
    support of NINR. Yet, despite many research successes, NINR was only
    able to fund 8.9 percent of grant applications in 2017, due to
    insufficient funding.\10\ This is the lowest research project grant
    (RPG) success rate among all NIH institutes and centers, and
    significantly lower than the overall NIH RPG success rate of 18.7
    percent.\11\ Despite these funding challenges, some NINR-funded
    projects returned between $202 and $1,206 for each dollar awarded in
    grants, according to a recent study in the journal Nursing Outlook.\12\
    To further this vital work, we are requesting a total of at least $182
    million for the National Institute of Nursing Research.
    ---------------------------------------------------------------------------
        \10\ Federal Funding of Nursing Research by the National Institutes
    of Health (NIH): 1993-2017 Kiely, Daniel P. et al. (2019) Page 9.
    Retrieved from: https://www.nursingoutlook.org/article/S0029-
    6554(19)30315-X/addons.
        \11\ Federal Funding of Nursing Research by the National Institutes
    of Health (NIH): 1993-2017 Kiely, Daniel P. et al. (2019) Page 9.
    Retrieved from: https://www.nursingoutlook.org/article/S0029-
    6554(19)30315-X/addons.
        \12\ Federal Funding of Nursing Research by the National Institutes
    of Health (NIH): 1993-2017 Kiely, Daniel P. et al. (2019) Page 2.
    Retrieved from: https://www.nursingoutlook.org/article/S0029-
    6554(19)30315-X/addons.
    ---------------------------------------------------------------------------
        Strong investments in Title VIII Nursing Workforce Development
    programs and NINR have a direct impact on the nursing pipeline and
    patient access to high-quality, evidence-based care in communities
    across the nation. During these challenging times, AACN respectfully
    requests continued support in fiscal year 2021 of at least $278 million
    for the Title VIII Nursing Workforce Development programs and $44.7
    billion for the National Institute of Health, which includes $182
    million for the National Institute of Nursing Research. Together, we
    can ensure that such investments promote innovation and improve
    healthcare in America.

        [This statement was submitted by Susan Bakewell-Sachs, PhD, RN,
    FAAN, Board Chair, American Association of Colleges of Nursing.]
                                     ______

         Prepared Statement of the American Association of Colleges of
                              Osteopathic Medicine
        The American Association of Colleges of Osteopathic Medicine
    (AACOM) leads and advocates for the full continuum of osteopathic
    medical education to improve the health of the public. Founded in 1898
    to support and assist the nation's osteopathic medical schools, AACOM
    represents all 36 accredited colleges of osteopathic medicine--
    educating nearly 31,000 future physicians, 25 percent of all U.S.
    medical students--at 57 teaching locations in 33 U.S. states, as well
    as osteopathic graduate medical education professionals and trainees at
    U.S. medical centers, hospitals, clinics, and health systems.
        AACOM strongly supports restoring funding for discretionary Health
    Resources and Services Administration (HRSA) programs to $8.8 billion;
    total funding of $790 million for key priorities in HRSA's Title VII
    and Title VIII programs under the Public Health Service Act, including
    adequate funding for the Centers for Excellence (COE), Health Careers
    Opportunity Program (HCOP), Scholarships for Disadvantaged Students
    (SDS) Program, Geriatrics Education Centers (GECs); $67 million for the
    Area Health Education Centers (AHECs) Program; $60 million for the
    Primary Care Training and Enhancement (PCTE) Program; $15 million for
    the Rural Residency Planning and Development Program; long-term
    sustainable funding for the Teaching Health Center Graduate Medical
    Education (THCGME) Program; at least $120 million in level funding for
    the National Health Service Corps (NHSC) and extension of the trust
    fund; a minimum of $44.7 billion for the National Institutes of Health
    (NIH); and $471 million in budget authority for the Agency for
    Healthcare Research and Quality (AHRQ).
        The Title VII health professions education programs, authorized
    under the Public Health Service Act and administered through HRSA,
    support the training and education of health practitioners to enhance
    the supply, diversity, and distribution of the healthcare workforce,
    acting as an essential part of the healthcare safety net and filling
    the gaps in the supply of health professionals not met by traditional
    market forces. Title VII programs are the only Federal programs
    designed to train primary care professionals in interdisciplinary
    settings to meet the needs of medically underserved populations, as
    well as increase minority representation in the healthcare workforce.
    AACOM supports total funding of $790 million for Title VII and Title
    VIII programs.
        As the demand for health professionals increases in the face of
    impending shortages and the anticipated demand for access to care
    increases, these needs strain an already fragile healthcare system.
    AACOM appreciates the investments that have been made in these
    programs, and we urge the Subcommittee for inclusion and/or continued
    support for the following programs: the COE, the HCOP, the SDS Program,
    the GECs, the AHECs, the PCTE Program, and the Rural Residency Planning
    and Development Program.
        The COE Program is integral to increasing the number of minority
    youth who pursue careers in the health professions.
        The HCOP provides students from disadvantaged backgrounds with the
    opportunity to develop the skills needed to successfully compete,
    enter, and graduate from health professions schools.
        The SDS Program provides scholarships to health professions
    students from disadvantaged backgrounds with financial need, many of
    whom are underrepresented minorities.
        GECs are collaborative arrangements between health professions
    schools and healthcare facilities that provide training between health
    professions schools and healthcare facilities that provide the training
    of health professions students, faculty, and practitioners in the
    diagnosis, treatment, and prevention of disease, disability, and other
    health issues.
        The AHEC Program provides funding for interdisciplinary, community-
    based, primary care training programs. Through a collaboration of
    medical schools and academic centers, a network of community-based
    leaders works to improve the distribution, diversity, supply, and
    quality of health personnel, particularly primary care personnel in the
    healthcare services delivery system, specifically in rural and
    underserved areas. AACOM supports a request of $67 million for the AHEC
    Program and strongly opposes any effort to eliminate this critical
    program.
        The PCTE Program provides funding to support awards to primary care
    professionals through grants to hospitals, medical schools, and other
    entities. AACOM supports a request of $60 million for this important
    program.
        The Rural Residency Planning and Development Program supports the
    development of new rural residency programs or Rural Training Tracks in
    family medicine, internal medicine, and psychiatry to help expand the
    physician workforce in rural areas across the country. Health
    professions workforce shortages are exacerbated in rural areas, where
    communities struggle to attract and maintain well-trained providers.
    AACOM supports the inclusion of $15 million for the Rural Residency
    Planning and Development Program.
        AACOM continues to strongly support the long-term sustainment of
    the THCGME Program, which provides funding to support primary care
    medical and dental residents training in community-based settings. The
    majority of currently-funded medical residency programs are osteopathic
    or dually-accredited (DO/MD). Currently, there are more than 728
    residents being trained in 56 HRSA-supported THC residencies in 23
    states. According to HRSA, physicians who train in teaching health
    centers (THCs) are three times more likely to work in such centers and
    more than twice as likely to work in underserved areas. The
    continuation of this program is critical to addressing primary care
    physician workforce shortages and delivering healthcare services to
    underserved communities most in need. AACOM is pleased that Congress
    supported this highly successful bipartisan program by providing a
    short-term funding extension in the Coronavirus Aid, Relief, and
    Economic Security (CARES) Act. However, funding for this program will
    expire after November 30. Stable funding is necessary for the THCGME
    Program to continue to expand and increase the number of physicians
    that work in communities of need. AACOM strongly supports the
    continuation of and permanent funding for the THCGME Program and will
    continue to work with Congress to support a sustainable and viable
    funding mechanism for its continuation. Furthermore, we strongly
    support that the program's funding continues as mandatory funding.
        The NHSC supports physicians and other health professionals who
    practice in health professional shortage areas across the U.S. The NHSC
    notes that a field strength of more than 13,000 primary care clinicians
    are providing services nationwide in health professional shortage areas
    in fiscal year 2020. While we were pleased to see a short-term funding
    extension in the Coronavirus Aid, Relief, and Economic Security (CARES)
    Act, stable funding is necessary for the continuation of this
    critically effective program. Therefore, AACOM supports the stability
    of the NHSC by requesting at least $120 million in level funding for
    the NHSC and extension of the NHSC trust fund, which expires after
    November 30.
        Research funded by the NIH leads to important medical discoveries
    regarding the causes, treatments, and cures for common and rare
    diseases, as well as disease prevention. These efforts improve our
    nation's health and save lives. To maintain a robust research agenda,
    further investment will be needed. AACOM supports a funding level of at
    least $44.7 billion for the NIH.
        AHRQ plays an important role in producing the evidence base
    research needed to improve our nation's health and healthcare. The
    incremental increases for AHRQ's Patient Centered Health Research
    Program in recent years will help AHRQ generate more of this research
    and expand the infrastructure needed to increase capacity to produce
    this evidence; however, more investment is needed. AACOM recommends
    $471 million in budget authority for AHRQ. This investment will
    preserve AHRQ's current programs while helping to restore its critical
    healthcare safety, quality, and efficiency initiatives. Additionally,
    AACOM opposes the consolidation of AHRQ into the NIH.
        AACOM appreciates the opportunity to submit its views and looks
    forward to continuing to work with the Subcommittee on these important
    matters.

        [This statement was submitted by Robert A. Cain, DO, FACOI, FAODME,
    President and Chief Executive Officer, American Association of Colleges
    of Osteopathic Medicine.]
                                     ______

               Prepared Statement of the American Association of
                   Neuromuscular & Electrodiagnostic Medicine
                        fiscal year 2021 recommendations
    _______________________________________________________________________

      --Please continue to provide meaningful, annual funding increases for
            healthcare fraud and abuse programs at the Centers for Medicare
            and Medicaid Services (CMS) while allowing for flexibility and
            innovation to address emerging challenges.
      --Please continue to include timely recommendations in the Committee
            Report accompanying the annual Labor-Health and Human Services-
            Education (LHHS) Appropriations Bill encouraging CMS to take
            substantive action to systematically address fraud, abuse, and
            the quality of patient care in electrodiagnostic (EDX)
            medicine.
    _______________________________________________________________________

        Chairman Blunt, Ranking Member Murray, and distinguished members of
    the Subcommittee, thank you for the opportunity to present the views of
    the American Association of Neuromuscular & Electrodiagnostic Medicine
    (AANEM) during the consideration of fiscal year 2021 LHHS
    appropriations. The challenges and opportunities that I will review
    today are not unique to AANEM, but impact a variety of medical
    professional societies and patient communities who rely on proper EDX
    testing. My comments are provided in the interest of spotlighting
    serious issues that continue to undermine patient care and waste
    Federal healthcare resources, while advancing policy tools to
    efficiently and effectively address these issues. In this regard,
    please consider the AANEM a resource moving forward. Thank you again
    for this important opportunity.
                                  about aanem
        AANEM is a nonprofit membership association dedicated to the
    advancement of neuromuscular (NM), musculoskeletal, and EDX medicine.
    Our members--primarily neurologists and physical medicine and
    rehabilitation (PMR) physicians--are joined by allied health
    professionals and PhD researchers working to improve the quality of
    medical care provided to patients with muscle and nerve disorders.
    Founded in 1953, AANEM currently has over 4,500 members across the
    country. Our mission is to improve quality of patient care and advance
    the science of neuromuscular diseases and EDX medicine by serving
    physicians and allied health professionals who care for those with
    muscle and nerve disorders. Our members are dedicated to diagnosing and
    managing a variety of nerve and muscle disorders including, but not
    limited to, amyotrophic lateral sclerosis, muscular dystrophies, and
    neuropathies, as well as more common conditions, such as pinched nerves
    and carpal tunnel syndrome.
                               about edx medicine
        When functioning properly, nerves send electrical impulses to the
    muscles to activate them. A nerve disorder means that signals are not
    getting through like they should. A muscle disorder means that muscles
    aren't responding to the signals correctly. To determine whether your
    nerves and muscles are working properly, your doctor may recommend you
    have EDX testing, which generally includes both a nerve conduction
    study (NCS) and needle electromyography (EMG) testing. Other tests may
    include imaging, genetic testing, biopsies, biochemical tests, and
    strength testing. The results of these tests help your doctor diagnose
    your condition and determine the best treatment.
        NCS.--These studies evaluate how quickly and efficiently electrical
    impulses move through the nervous system. While it may sound straight-
    forward, proper testing requires sophisticated equipment, an
    understanding of the patient's health history, and, most importantly,
    the ability to design/perform the study and interpret the results.
        EMG.--This test evaluates muscles and nerves through the use of
    electrodes under the skin. Since the procedure is invasive and highly
    technical, it is considered to be the practice of medicine by the
    American Medical Association;requiring training, study, and experience
    to ensure patient safety and testing efficacy.
                           about edx fraud and abuse
        In 2014, the HHS OIG published a report entitled, Questionable
    Billing for Medicare Electrodiagnostic Tests, which found roughly $140
    million in suspicious activity annually. But experience tells us that
    this is just the tip of the iceberg. And the toll of patient suffering
    and hardship as the result of fraudulent EDX testing is incalculable.
    Unfortunately, since this report was released, the situation has
    deteriorated rather than improved. Our members have anecdotally noted
    an increase in fraud activity (both through solicitations and by re-
    testing patients that were victims of improperly performed tests),
    which appears to be supported by CMS utilization data. CMS revised the
    EDX codes in 2013 which has actually made it harder to identify
    systematic fraud and abuse in this area. Bad actors are aware of the
    gaps in the current CMS regulatory and enforcement framework that
    create unique blind spots for EDX testing, and this deficiency
    continues to be exploited with many criminal endeavors operating in the
    open for years as sham professional service providers (the small number
    that are caught and convicted annually has not served as a deterrent).
    To be clear, the victims continue to be the patients that are
    improperly tested, subjected to a battery of studies, and over-billed,
    with no intention of receiving an accurate diagnosis or who were never
    in need of testing in the first place.
                              common fraud schemes
        Mobile Labs.--Unlike traditional healthcare mobile labs that
    conduct community outreach and deliver valuable clinical services, EDX
    ``mobile labs'' exist exclusively to perpetuate fraud. A provider is
    solicited to have a technician sent to their office to conduct EDX
    testing for all patients on a given day under the guise of generating
    additional revenue and enhancing services offered. The provider is
    often unaware that the testing is improper and that the fraudulent
    company is using the untrained provider to technically fulfill the
    requirement of ``supervising'' the tests. The testing is not guided
    onsite nor in real time, as is required by the AMA's CPT codebook, and
    as many nerves as possible are tested to increase billing. The tests
    are then sent to a complicit, offsite clinician that ``reviews'' the
    results after the fact and submits for reimbursement. From the
    perspective of the third-party payer reviewing the billing, this system
    of fraud is nearly impossible to identify.
        Pain Fiber NCS.--Fraudulent activity in this area is increasingly
    associated, in part, with disreputable pain clinics. Proprietary
    devices claim to evaluate pain, and diagnose sensory radiculopathies (a
    pinched nerve in the neck or back), or even fibromyalgia. These
    machines are not actually capable of selectively stimulating nerve
    fibers or recording the nerve responses so no nerve or muscle disorders
    can be accurately or reliably diagnosed. CMS is aware of this and
    created non reimbursable codes, but bad actors simply bill for the
    procedure using standard NCS codes.
        NCS without EMG Testing.--A complete EDX examination typically
    involves both NCS and EMG studies, with NCS testing exclusively
    required in a small number of cases. However, since needle EMG is an
    invasive procedure and bad actors are relying on a technician, a high
    rate of NCS-only studies is a hallmark of fraud and abuse.
                                     ______

           prepared statement of aanem member dr. vince tranchitella
        New NCS codes became effective on January 1, 2013. The new codes
    were developed as a direct response to fraudulent activity that
    resulted in the exponentially increased billing for NCSs.
    Unfortunately, the new NCS codes failed to have the desired effect. In
    the past 3 years alone, I have reviewed at least 27 EDX medicine fraud
    cases, involving multiple providers each, affecting hundreds of
    patients. Nine of these cases involved providers in the New York City
    region. Most of the providers I reviewed did not receive appropriate
    training in EDX medicine yet were still regularly conducting studies.
                                recent examples
        EDX fraud not only wastes healthcare dollars, but, more
    importantly, the quality of patient care suffers severely. As an
    example, a recent case in which I testified in Houston working for the
    FBI and the U.S. Attorney's Office, many patients' insurance companies
    were being billed more than $30,000 for a study that should cost $800
    to $1200. Of note, when a detailed review was performed, more than 85
    percent of the diagnoses arrived at with these fraudulent studies were
    incorrect and unreliable. These inappropriate and inaccurate studies
    did not help these patients in finding appropriate treatments or
    solutions to their medical problems. In fact, they often sent the
    patients down costly and ineffective paths of treatment. In this case
    alone the perpetrators were convicted of EDX fraud totaling nearly $5
    million.
        As is invariably the case with mobile EDX laboratories, quality of
    care suffers while costs skyrocket and the real losers are,
    unfortunately, the patients. In a case I had in California, a 47 year
    old man had a mobile EDX study done that cost him (and his insurance
    company) more than $7,500 and told him his symptoms were from a
    ``pinched nerve in his leg''. When I performed the correct study
    (charging about $750) I found his true diagnosis to be ALS (or Lou
    Gehrig's disease).
                             current opportunities
        CMS, the FBI, and the HHS OIG have been doing tremendous work to
    root out fraud and abuse in EDX medicine, but these dedicated public
    servants are limited by the constraints of the current pay-and-chase
    model. Additional resources for ongoing CMS efforts to address
    healthcare fraud and abuse will facilitate incremental improvements and
    further protect patients, but modernization is needed as well. Over
    recent appropriations cycles, Congress has called on CMS to work with
    the EDX community on innovative solutions that could better identify
    bad actors conducting EDX testing or simply prevent payments for
    improper studies before they are made. Please continue to work with CMS
    through the fiscal year 2021 appropriations process to recommend
    greater community collaboration and to encourage meaningful and timely
    progress in the area of EDX fraud and abuse.

        [This statement was submitted by Peter A. Grant, MD, EDX Fraud and
    Abuse Consultant for FBI and OIG, American Association of Neuromuscular
    & Electrodiagnostic Medicine.]
                                     ______

        Prepared Statement of the American Association of Immunologists
        The American Association of Immunologists (AAI), the nation's
    largest professional society of research scientists and physicians who
    are dedicated to understanding the immune system through basic,
    translational, and clinical research, respectfully submits this
    testimony regarding fiscal year 2021 appropriations for the National
    Institutes of Health (NIH). AAI recommends an appropriation of at least
    $44.7 billion for fiscal year 2021 to enable NIH to fund critically
    important research to prevent dangerous infectious diseases and treat
    debilitating chronic diseases, support meritorious scientists at all
    career stages, and ensure a robust biomedical research enterprise that
    maintains U.S. preeminence in science and innovation. Because of the
    current COVID-19 pandemic, NIH will require, and AAI strongly supports,
    the appropriation of additional emergency supplemental funding that is
    being considered outside of the annual appropriations process.
          public health importance of understanding the immune system
        While recent attention to the immune system has focused on its
    ability, properly harnessed, to kill malignant tumors and treat other
    chronic diseases (immunotherapy), the coronavirus pandemic has
    highlighted the immune system's critical role in protecting against
    infectious agents--including viruses--that cause disease. The immune
    system plays a significant role in preventing and fighting existing and
    emerging infectious diseases such as HIV/AIDS, influenza, measles,
    tuberculosis, and Ebola. It is also central to many chronic conditions
    such as Alzheimer's and cardiovascular disease. Research into many of
    these diseases has helped scientists take on our most recent challenge:
    understanding the cause, prevention, and treatment of a novel
    coronavirus, SARS-CoV2, and its consequent disease, COVID-19.
    Significant recent developments in immunology research are described
    below.
    Vaccines for SARS-CoV2/Emerging Infectious Diseases
        Vaccines are the most efficient and effective method of disease
    prevention. Globally, vaccination against more than two dozen viral,
    bacterial, and fungal diseases prevents about 2.5 million deaths and
    reduces the severity of illness for millions of people annually.\1\ As
    the world's population grows and becomes more interconnected, the
    threat of a new emerging pathogen causing a worldwide pandemic, which
    has long been feared, has been realized: on March 11, 2020, the World
    Health Organization declared the novel coronavirus outbreak a pandemic.
    ---------------------------------------------------------------------------
        \1\ https://www.who.int/immunization/global_vaccine_action_plan/
    GVAP_doc_2011_2020/en/.
    ---------------------------------------------------------------------------
        Although there is currently no approved vaccine for SARS-CoV2, NIH-
    funded research conducted on other causative pathogens in recent
    epidemics, including SARS (now known as SARS-CoV1) (2002) and MERS
    (2012), has made possible the rapid development of vaccine candidates
    for SARS-CoV2.\2\ While no vaccine is likely to be approved by the Food
    and Drug Administration (FDA) for at least another year, eight
    candidate vaccines are currently being tested in human subjects; \3\
    this includes a candidate vaccine developed in part by researchers at
    the National Institute of Allergy and Infectious Diseases' Vaccine
    Research Center that moved into a clinical trial at a rate never before
    observed in the history of vaccine development.\4\ In addition, anti-
    viral therapeutics supported by NIH-funded research are already in, or
    are moving toward, clinical testing for efficacy against SARS-CoV2.\5\
    One such therapeutic, remdesivir, has already been approved by the FDA
    for emergency use ``for the treatment of suspected or laboratory-
    confirmed COVID-19 in adults and children hospitalized with severe
    disease.'' \6\ AAI is optimistic that previously conducted research,
    together with new research now being urgently pursued, will result in
    new vaccines and additional treatments that will prevent and/or reduce
    the lethality of COVID-19.
    ---------------------------------------------------------------------------
        \2\ https://www.niaid.nih.gov/diseases-conditions/coronaviruses
        \3\ https://www.who.int/who-documents-detail/draft-landscape-of-
    covid-19-candidate-vaccines; https://www.washingtonpost.com/health/
    2020/05/18/coronavirus-vaccine-first-results/.
        \4\ https://www.nih.gov/news-events/news-releases/nih-clinical-
    trial-investigational-vaccine-covid-19-begins.
        \5\ https://www.nih.gov/news-events/news-releases/nih-clinical-
    trial-remdesivir-treat-covid-19-begins.
        \6\ https://www.fda.gov/news-events/press-announcements/
    coronavirus-covid-19-update-fda-issues-emergency-use-authorization-
    potential-covid-19-treatment.
    ---------------------------------------------------------------------------
        With regard to other infectious diseases, NIH-funded research has
    allowed scientists to make significant advances in understanding and
    developing vaccines against many emerging infectious agents. In 2019
    alone, this research helped lead to a FDA-approved Ebola vaccine, a
    phase-I clinical trial for a Zika vaccine, and a multi-national phase-3
    clinical trial for an HIV vaccine.\7\ Researchers have also begun
    early-stage clinical trials of a universal vaccine for influenza, a
    disease that results in 9--45 million illnesses and 12,000--61,000
    deaths per year in the U.S.\8\ Without strong, steady support from NIH,
    researchers will be ill-prepared to respond to new emerging diseases
    threatening the safety of Americans and people around the world.
    ---------------------------------------------------------------------------
        \7\ https://directorsblog.nih.gov/2020/01/02/celebrating-
    biomedical-breakthroughs-in-2019/; https://www.nih.gov/news-events/
    news-releases/nih-begins-clinical-trial-live-attenuated-zika-vaccine;
    https://www.nih.gov/news-events/news-releases/nih-partners-launch-hiv-
    vaccine-efficacy-trial-americas-europe.
        \8\ https://www.cdc.gov/flu/about/burden/index.html; https://
    www.nih.gov/news-events/news-releases/nih-begins-first-human-trial-
    universal-influenza-vaccine-candidate.
    ---------------------------------------------------------------------------
    Cancer Immunotherapy
        Cancer immunotherapy harnesses the power of the immune system of
    the patient to fight tumors, contributing to substantial reductions in
    cancer mortality. These treatments include engineered tumor-specific
    immune cells (adoptive cell therapy), therapies that restore cellular
    functional capacity to exhausted immune cells (checkpoint blockade),
    and vaccines to generate new immune responses against the tumor. In
    2019, the FDA approved immunotherapies for several types of cancer,
    including breast, bladder, uterine, kidney, and esophageal.\9\
    ---------------------------------------------------------------------------
        \9\ https://www.cancerresearch.org/immunotherapy/timeline-of-
    progress#.
    ---------------------------------------------------------------------------
      --Adoptive Cell Therapy: The success of chimeric antigen receptor T
            cells (CAR-T; T cells engineered to express novel receptors
            targeting specific tumor-associated molecules) in the treatment
            of B cell lymphomas has led to current NIH-funded clinical
            trials testing the efficacy of CAR-T cells in solid tumors,
            such as for patients with glioblastoma and pancreatic
            cancer.\10\
    ---------------------------------------------------------------------------
        \10\ https://clinicaltrials.gov/ (NCT04003649, NCT02830724).
    ---------------------------------------------------------------------------
      --Checkpoint Blockade Therapy: Recent advances in this area have
            provided substantial benefit in clinical trials to oncology
            patients with solid tumors, including melanoma, non-small-cell
            lung carcinoma, and glioblastoma.\11\ Additional research
            efforts aim to increase the efficacy of this treatment by
            identifying combinatorial therapies and biomarkers of
            successful treatment.\12\
    ---------------------------------------------------------------------------
        \11\ https://www.ncbi.nlm.nih.gov/pubmed/30742122; https://
    www.ncbi.nlm.nih.gov/pubmed/3040
    7895.
        \12\ https://www.ncbi.nlm.nih.gov/pubmed/31636208; https://
    www.ncbi.nlm.nih.gov/pubmed/3031
    8169.
    ---------------------------------------------------------------------------
      --Vaccines: An existing therapeutic vaccine targets prostate cancer,
            with ongoing clinical trials testing novel vaccines designed to
            combat multiple myeloma and breast cancer.\13\ Additionally,
            meta-analyses of a decade of human papilloma virus (HPV)
            vaccinations have provided compelling evidence of the vaccine's
            efficacy and safety, leading to new efforts to reduce HPV-
            related cervical cancer.\14\
    ---------------------------------------------------------------------------
        \13\ https://www.cancer.gov/about-cancer/treatment/types/
    immunotherapy/cancer-treatment-vaccines; https://clinicaltrials.gov/
    (NCT03376477, NCT00971737).
        \14\ https://www.ncbi.nlm.nih.gov/pubmed/31255301; https://
    www.ncbi.nlm.nih.gov/pubmed/3199
    0905.
    ---------------------------------------------------------------------------
        Ongoing NIH-funded research seeks to identify new opportunities to
    improve the efficacy of immuno-therapies for additional cancer types as
    well as exploring its use as a treatment for other life-threatening or
    debilitating conditions, including heart disease and autoimmune
    conditions.\15\
    ---------------------------------------------------------------------------
        \15\ https://www.ncbi.nlm.nih.gov/pubmed/31511695; https://
    www.ncbi.nlm.nih.gov/pubmed/3195
    7209.
    ---------------------------------------------------------------------------
    Vaping
        Since 2007, the U.S. has seen an exponential increase in the use of
    e-cigarettes. In 2018, one in 20 middle school and one in five high
    school students was using e-cigarettes.\16\ This increased use has
    resulted in an outbreak of e-cigarette or vaping associated lung
    injuries (EVALI), with nearly 3,000 cases of hospitalization or
    death.\17\ Pathological analyses of lung injury patterns demonstrate
    extensive lung inflammation in these cases.\18\ While inflammation--the
    immune system's response to injury--is usually a sign of healing,
    excessive inflammation for a prolonged period of time will cause lung
    damage that can be fatal. As a result, NIH is currently supporting
    research to investigate the pathogenesis of EVALI, including studies of
    especially vulnerable populations, such as those with allergies or
    asthma.\19\
    ---------------------------------------------------------------------------
        \16\ https://www.cdc.gov/tobacco/basic_information/e-cigarettes/
    surgeon-general-advisory/index.
    html.
        \17\ https://www.cdc.gov/tobacco/basic_information/e-cigarettes/
    severe-lung-disease.html.
        \18\ https://www.hindawi.com/journals/cripu/2020/6138083/; https://
    pubs.rsna.org/doi/10.1148/radiol.2020192585.
        \19\ https://www.niaid.nih.gov/grants-contracts/vaping-and-lung-
    injury.
    ---------------------------------------------------------------------------
       nih's essential role in the nation's--and the world's--biomedical
                              research enterprise
        As the nation's major funding agency for biomedical research, NIH
    supports more than 300,000 researchers at 2,500 universities, medical
    schools, and other research institutions across the nation and inter-
    nationally,\20\ as well as 6,000 additional researchers and clinicians
    who work at NIH facilities around the country.\21\ By supporting these
    researchers and laboratories, NIH funding strengthens state and local
    economies; in 2019, NIH funding supported more than 476,000 jobs and
    accounted for $81 billion in economic activity across the U.S.\22\ NIH-
    funded basic research is also an essential and irreplaceable part of
    the biomedical research pipeline, leading to lifesaving and life-
    changing new drugs. In 2018, NIH-funded research contributed to all 210
    of the new drugs approved by the FDA from 2010-2016.\23\
    ---------------------------------------------------------------------------
        \20\ https://www.nih.gov/about-nih/what-we-do/budget; https://
    report.nih.gov/award/index.cfm.
        \21\ https://irp.nih.gov/about-us/research-campus-locations.
        \22\ https://www.unitedformedicalresearch.org/wp-content/uploads/
    2019/04/NIHs-Role-in-Sustaining-the-US-Economy-FY19-FINAL-
    2.13.2020.pdf.
        \23\ https://directorsblog.nih.gov/2018/02/27/basic-research-
    building-a-firm-foundation-for-biomedicine/.
    ---------------------------------------------------------------------------
        NIH also serves as an indispensable scientific leader both in the
    U.S. and internationally. The steward of nearly $42 billion in Federal
    funds, NIH keeps our nation's leaders apprised of scientific
    advancements and research priorities and works to ensure that taxpayer
    dollars are prudently spent. It oversees and establishes rules
    governing the conduct of scientific research and the research
    enterprise, working most recently to combat sexual harassment in
    science and address concerns about foreign influence in science.
        NIH also plays an essential role in responding to emerging threats;
    during the current novel coronavirus pandemic, NIH is providing vital
    scientific expertise to the President, Congress, and the American
    public while supporting urgently needed efforts to develop treatments
    and a vaccine. In April, working in collaboration with the Foundation
    for the NIH (FNIH), NIH announced the formation of the Accelerating
    COVID-19 Therapeutic Interventions and Vaccines (ACTIV) partnership.
    This effort will bring together leading biopharmaceutical and biotech
    companies and government agencies ``to develop an international
    strategy for a coordinated research response to the COVID-19
    pandemic,'' including developing ``a collaborative framework for
    prioritizing vaccine and drug candidates, streamlining clinical trials,
    coordinating regulatory processes and/or leveraging assets among all
    partners to rapidly respond to the COVID-19 and future pandemics.''
    \24\
    ---------------------------------------------------------------------------
        \24\ https://www.nih.gov/news-events/news-releases/nih-launch-
    public-private-partnership-speed-covid-19-vaccine-treatment-options;
    Corey et al. A Strategic Approach to COVID-19 Vaccine R&D. Science.
    DOI: 10.1126/science.abc5312 (2020).
    ---------------------------------------------------------------------------
               funding increases continue to rebuild nih capacity
        Congress, led by this subcommittee, has invested robustly in NIH in
    recent years, including a $2.6 billion budget increase for fiscal year
    2020. This increase has helped restore much of the purchasing power
    that NIH lost after years of inadequate budgets and erosion from
    biomedical research inflation; once more than 22 percent below its peak
    funding level (2003), the gap has eased to 5.4 percent.\25\ Meaningful
    budget growth remains necessary to close this gap and allow NIH to make
    needed investments in important research priorities across all NIH
    Institutes and Centers. Because the current cap on fiscal year 2021
    nondefense discretionary spending could preclude the subcommittee from
    making this investment, AAI requests a budget cap exemption for NIH.
    ---------------------------------------------------------------------------
        \25\ https://crsreports.congress.gov/product/pdf/R/R43341.
    ---------------------------------------------------------------------------
        As the baby boom generation continues to retire, it is even more
    urgent to ensure a dynamic research environment that will allow for the
    training, development, and support of our next generation of
    researchers, doctors, professors, and inventors. Timely, robust funding
    increases for NIH would instill further confidence in all researchers,
    including these essential early- and mid-career researchers.
                                   conclusion
        AAI greatly appreciates the subcommittee's strong support for NIH
    and urges an appropriation of at least $44.7 billion for fiscal year
    2021. This funding level will provide needed growth across NIH,
    including for vital immunologic research, support meritorious
    scientists at all career stages, and help scientists discover ways to
    prevent, treat, and cure diseases that afflict people in the U.S. and
    around the world.

        [This statement was submitted by Ross M. Kedl, Ph.D., American
    Association of Immunologists.]
                                     ______

              Prepared Statement of the American Chemical Society
        Dear Chairman Blunt and Ranking Member Murray:
        The American Chemical Society (ACS) urges you to support robust
    funding for the National Institutes of Health (NIH) when the Labor,
    Health and Human Services, Education and Related Agencies
    appropriations bill is written. The work of the National Institute of
    General Medical Sciences (NIGMS), National Center for Advancing
    Translational Sciences (NCATS), and the National Institute of
    Biomedical Imaging and Bioengineering (NIBIB) is vital to advancing
    medical research and promoting the health of the American people, but
    remains unfamiliar to many Americans compared to disease-specific
    centers and institutes.
        Through its research grants and fellowship programs, NIH also plays
    an integral role in attracting and training the young scientists and
    engineers who will help the United States remain a leader in medical
    research and technology. Investing in the NIH now ensures a future of
    well-trained scientists and continued medical advances to combat
    diseases and public health crises.
        As an organization of over 150,000 chemical scientists and
    engineers, ACS understands the benefits of sustained, predictable
    funding for NIH to the research community. For example:
        NIGMS, which has supported more than 50 Nobel laureates, funds
    high-quality, non-disease-specific basic research, laying the
    scientific foundation for an array of advances in disease prevention,
    diagnosis, and treatment used by other institutes. NIGMS funds the
    MIDAS (Models of Infectious Disease Agent Study) Coordination Center,
    which coordinates and facilitates infections disease modeling research.
    The MIDAS collaboration brings together more than 300 scientists
    conduct research on computational modeling to improve the detection,
    control, and prevention of emerging infectious diseases. In response to
    the COVID-19 pandemic, the coordinating center created a central online
    repository for the scientific community-a clearinghouse for sharing
    data and data-driven discoveries about COVID-19 to enable an
    extraordinary international collection of data and information
    regarding the outbreak.
        NIBIB supports basic research and training through investigator-
    initiated grants, contracts, program project and center grants, and
    career development and training awards. The Institute also specializes
    in the development and application of cutting-edge technologies based
    upon engineering, mathematics, and the physical sciences for the
    solution of challenges intersecting biology and medicine such as the
    NIH Rapid Acceleration of Diagnostics (RADx) Initiative for COVID-19,
    which aims to rapidly develop and scale up testing for COVID-19.
        NCATS focuses on ensuring that groundbreaking research from
    universities reaches the people who need it by streamlining the
    pipeline from basic research to applied research to medicines and
    techniques used in medicine. Furthermore, it is a partner in the
    National COVID Cohort Collaborative (N3C), an effort to pool COVID-19
    clinical data to answer research questions and address the pandemic.
    NIGMS, NIBIB, and NCATS all contribute to the vibrant health and
    medical research community in the United States, and to the critical
    mission of NIH as a whole.
        As the subcommittee completes its important work, please ensure
    robust support for all of the institutes of the NIH, and its mission of
    improving the health of the citizens of the United States. While recent
    events have highlighted the important work of institutes focused
    directly on infectious illnesses, scientific advancement in all facets
    of biomedical research depend on steady funding.
        Sincerely.

        [This statement was submitted by Glenn S. Ruskin, Vice President,
    External
    Affairs & Communications.]
                                     ______

            Prepared Statement of the American College of Cardiology
        The American College of Cardiology (ACC) commends Congress for
    boosting funding for the National Institutes of Health (NIH), Centers
    for Disease Control and Prevention (CDC), and the Health Resources and
    Services Administration's (HRSA) Title VII and Title VIII programs in
    fiscal year 2020. The College also applauds the emergency supplemental
    funding appropriated for these agencies in response to the COVID-19
    public health emergency, including $3.5 billion for the NIH and $7.5
    billion for the CDC for vaccine research, preparedness, and
    surveillance. Since those with underlying conditions such as
    cardiovascular disease may be at higher risk for developing severe
    COVID-19 symptoms, ensuring robust funding for both pre-COVID and post-
    COVID projects across these agencies is essential in the months ahead.
    To continue this important progress in fiscal year 2021 and beyond, ACC
    urges members of Congress to appropriate the following funds toward
    agencies doing vital work in cardiovascular disease (CVD) treatment and
    prevention: $3.885 billion for the National Heart Lung & Blood
    Institute (NHLBI) and $2.621 billion toward the National Institute of
    Neurological Disorders & Stroke (NINDS) to increase the NIH's
    purchasing power and preserve U.S. leadership in research; $160 million
    toward the CDC's Division for Heart Disease and Stroke Prevention to
    strengthen heart disease prevention efforts at state and local levels,
    $5 million toward CDC's Million Hearts to prevent 1 million heart
    attacks and strokes by 2022, $46.7 million toward CDC's WISEWOMAN to
    help uninsured or under-insured women prevent or control heart disease,
    $10 million toward CDC congenital heart research to study its effects
    over the patient's lifespan, and $310 million toward CDC's Office on
    Smoking and Health to maintain the program's cost-effective tobacco
    control efforts. ACC asks for the inclusion of report language
    promoting HRSA's Title VII and Title VIII healthcare workforce
    diversity programs: The committee supports programs that improve the
    diversity of the healthcare workforce. HRSA's diversity pipeline
    programs, including the Health Careers Opportunity Program, Centers for
    Excellence, Faculty Loan Repayment, Nursing Workforce Diversity, and
    Scholarships for Disadvantaged Students help advance patient care and
    ensure opportunity for all healthcare providers.
        ACC envisions a world where innovation and knowledge optimize
    cardiovascular care and outcomes. As the professional home for the
    entire cardiovascular team, the mission of the College and its more
    than 52,000 members is to transform cardiovascular care and improve
    heart health. The ACC bestows credentials upon cardiovascular
    professionals who meet stringent qualifications and leads in the
    formation of health policy, standards and guidelines. The College also
    provides professional medical education, disseminates cardiovascular
    research through its world-renowned JACC Journals, operates national
    registries to measure and improve care, and offers cardiovascular
    accreditation to hospitals and institutions.
        CVD, a class of diseases that includes diseased blood vessels,
    structural problems, and blood clots, continues to be the leading cause
    of death among men and women in the United States and is responsible
    for 1 in every 4 deaths.\1\ More than 92 million Americans currently
    suffer from some form of CVD--nearly one-third of the population--but
    it remains one of the most underfunded deadly diseases, as the NIH only
    invests 4 percent of its research dollars on heart research.\2\ The
    heart disease death rate has continued to drop since the 1970s \3\ due
    to scientific advances and improved heart medications and procedures--
    but to meet the challenges of an aging population, rising obesity rates
    and unhealthy diets, the NIH must maintain its place at the forefront
    of medical innovation for years to come. The NHLBI, the third-largest
    institute at the NIH, conducts research related to heart, blood vessel,
    lung, and blood diseases, generating drugs for lowering cholesterol,
    controlling blood pressure, and dissolving blood clots. These
    biomedical advancements have contributed to a 71 percent \4\ decrease
    in death rates due to cardiovascular disease. NHLBI's recent
    groundbreaking research found that more intensive management of high
    blood pressure in people 50 years and older reduces cardiovascular
    events by almost 25 percent.\5\ We recommend that NHLBI be funded at
    $3.885 billion to maintain current activities and investment toward new
    research and emerging technologies related to heart disease.
    ---------------------------------------------------------------------------
        \1\ Heart Disease Facts; Centers for Disease Control and
    Prevention. https://www.cdc.gov/heartdisease/facts.htm.
        \2\ National Coalition for Heart and Stroke Research; American
    Heart Association. http://www.heart.org/HEARTORG/Advocate/
    IssuesandCampaigns/Research/National-Coalition-for-Heart-and-Stroke-
    Research_UCM_428347_Article.jsp#.Wt4h-m4vypo.
        \3\ Decline in Cardiovascular Mortality; National Library of
    Medicine. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5268076/.
        \4,5\ HHS/NIH/NHLBI Fiscal Year 2017 Congressional Justification
    Report; https://www.nhlbi.nih.gov/sites/default/files/media/docs/
    Final%20NHLBI%202017%20CJ_R508_v1_0.
    pdf.
    ---------------------------------------------------------------------------
        NINDS conducts research on brain and nervous system disorders,
    including stroke prevention and treatment. Coronary heart disease and
    stroke share many of the same risk factors such as high cholesterol
    levels, high blood pressure, smoking, diabetes, physical inactivity,
    and being overweight or obese. The NINDS Stroke Clinical Trials Network
    develops high-quality, multi-site clinical trials focused on key
    interventions in stroke prevention, treatment and recovery. We
    recommend that NINDS be funded at $2.621 billion to enhance its
    existing initiatives and explore new priorities in stroke prevention.
        The CDC plays a vital role in protecting public health through
    healthy lifestyle promotion and educational activities designed to curb
    non-infectious diseases such as obesity, diabetes, stroke, and heart
    disease. The CDC Division for Heart Disease and Stroke Prevention
    supports efforts to improve cardiovascular health by promoting healthy
    lifestyles and behaviors, healthy environments, and access to early
    detection and affordable treatment. The division engages with local and
    state health departments, and a variety of other partners, to provide
    funding and resources, conduct research, track risk factors, and
    evaluate current programs and policies relating to heart disease. We
    recommend that the CDC Division for Heart Disease and Stroke Prevention
    be funded at $160 million to continue its prevention activities among
    the most vulnerable communities.
        Launched in 2012 and co-led by the CDC and the Centers for Medicare
    and Medicaid Services, the Million Hearts program coordinates and
    enhances CVD prevention activities with the objective of preventing 1
    million heart attacks and strokes by the year 2022. The initiative aims
    to achieve this goal by encouraging the public to lead a healthy and
    active lifestyle, as well as improving medication adherence for aspirin
    and other medications to manage blood pressure, cholesterol, and
    smoking cessation. We recommend that Million Hearts be funded at $5
    million to enhance efforts preventing heart attacks and strokes.
        CDC's WISEWOMAN initiative provides more than 165,000 under-
    insured, low-income women ages 40-64 with services to help reduce heart
    disease and stroke risk factors. Heart disease ranks as the leading
    cause of death for women. Only 1 in 5 women \6\ believes heart disease
    is her greatest health threat, and 11 percent \7\ of women remain
    uninsured. We recommend that $46.7 million be allocated for WISEWOMAN
    to provide preventive health services, referrals to local healthcare
    providers, lifestyle programs, and counseling in all 50 states.
    ---------------------------------------------------------------------------
        \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.
    ---------------------------------------------------------------------------
        Congenital heart disease (CHD), a life-long consequence of a
    structural abnormality of the heart present at birth, is the number one
    birth defect in the U.S. While the diagnosis and treatment of CHD has
    greatly improved over the years, most patients with complex heart
    defects need special care throughout their lives, and only by expanding
    research opportunities can we fully understand the effects of CHD
    across the lifespan. As authorized by the Congenital Heart Futures
    Reauthorization Act of 2017, we recommend that the CDC National Center
    for Birth Defects and Developmental Disabilities be funded at $10
    million for enhanced CHD surveillance and public health research.
        Programs within CDC's Office on Smoking and Health (OSH) work to
    prevent smoking among young adults and eliminate tobacco-related health
    disparities in different population groups. In 2012, OSH launched the
    national tobacco education campaign, Tips from Former Smokers, which
    has motivated more than 5 million \8\ people to quit smoking, with at
    least 400,000 quitting permanently.\9\ While these programs have proven
    effective in tobacco cessation and prevention, more than 480,000 people
    still die every year from causes attributable to smoking, and 33
    percent of those deaths stem from heart disease.\10\ We recommend that
    OSH be funded at $310 million to continue leading the nation's efforts
    in preventing chronic diseases caused by tobacco use.
    ---------------------------------------------------------------------------
        \8,9\ Office on Smoking and Health; Centers for Disease Control and
    Prevention. https://www.cdc.gov/tobacco/about/osh/.
        \10\ Smoking and Tobacco Use, Fast Facts; Centers for Disease
    Control and Prevention. https://www.cdc.gov/tobacco/data_statistics/
    fact_sheets/fast_facts/index.htm..
    ---------------------------------------------------------------------------
        Treating and preventing chronic disease is dependent on robust
    healthcare workforce programs, which are vital given projections of
    severe physician shortages.\11\ The HRSA Title VII and Title VIII
    training and enhancement grants help expand the primary care and
    nursing workforce to treat patients in rural and other underserved
    areas. We encourage HRSA to enhance its diversity workforce programs to
    address current and emerging healthcare quality and access challenges.
    ---------------------------------------------------------------------------
        \11\ New Findings Confirm Predictions on Physician Shortage, AAMC.
    https://www.aamc.org/news-insights/press-releases/new-findings-confirm-
    predictions-physician-shortage.
    ---------------------------------------------------------------------------
        On behalf of our members who work to prevent and treat CVD, ACC
    would like to thank members of Congress for supporting medical
    innovation as we continue the fight against heart disease. Stable
    funding for medical research and healthy lifestyle promotion, as well
    as advancing our healthcare workforce will not only save lives, but
    save healthcare costs in the long term. Medical research nurtures
    economic growth by creating jobs and new technologies, which will
    produce billions of dollars in Medicare and Medicaid savings over the
    next decade. Please help us secure robust funding for NIH and CDC
    funding to protect the health of future generations.

        [This statement was submitted by Athena Poppas, MD, FACC,
    President,
    American College of Cardiology.]
                                     ______

                 Prepared Statement of the American College of
                        Obstetricians and Gynecologists
        The American College of Obstetricians and Gynecologists (ACOG),
    representing more than 60,000 physicians and partners dedicated to
    advancing women's health, is pleased to offer this statement to the
    Senate Committee on Appropriations, Subcommittee on Labor, Health and
    Human Services, Education, and Related Agencies. We thank Chairman
    Blunt, Ranking Member Murray, and the entire Subcommittee for this
    opportunity to provide comments on some of the most important programs
    to support and advance women's health.
        ACOG commends Congress for making great strides to support research
    and data collection that advance the health of women and families.
    Looking ahead, we urge you to make funding of the following programs
    and agencies a priority in fiscal year 2021:
    Safe Motherhood, Maternity and Perinatal Quality Collaboratives at
            Centers for Disease Control and Prevention (CDC):
        The United States has the highest rate of maternal mortality and
    severe morbidity of any developed country. The Safe Motherhood
    Initiative at CDC works with state health departments to collect
    information on pregnancy-related deaths, gives technical assistance to
    maternal mortality review committees, tracks preterm births, and
    improves maternal outcomes through perinatal quality collaboratives.
    These data and initiatives are imperative to addressing the nation's
    maternal mortality and morbidity crisis. Important strides have been
    made as nearly every state currently has, is in the process of
    implementing, or is making plans to develop a state maternal mortality
    review committee. We must continue to build on this progress and
    improve maternal health outcomes. ACOG requests funding for the Safe
    Motherhood Initiative at $76 million, including $30 million to help
    states expand or establish maternal mortality review committees, and $2
    million for state-based perinatal quality collaboratives.
    Women's Health Research at the National Institutes of Health (NIH):
        Women represent half of the U.S. population. As such, conditions
    and diseases that are specific to women's health, or those that present
    differently in women than men, must be a priority for federally funded
    research. Women's health research is a central part of the Eunice
    Kennedy Shriver National Institute of Child Health and Human
    Development (NICHD)'s research mission and portfolio, and the Institute
    has achieved great success in advancing research on women's health
    throughout the life cycle; maternal, child, and family health; fetal
    development; reproductive biology; population health; and medical
    rehabilitation. With sufficient resources, NICHD can build upon its
    existing initiatives to produce new insights and solutions to benefit
    women and families. ACOG supports an appropriation of $44.7 billion for
    the National Institutes of Health (NIH) in fiscal year 2021, including
    $1.6 billion for NICHD. This amount would maintain a steady trajectory
    of a $3 billion annual increase for the NIH.
        ACOG also supports the convening of a consensus conference at NIH
    to evaluate research currently underway related to women's health and
    identify priority areas for additional study to advance women's health
    research, including reproductive sciences.
        ACOG also urges that additional funds appropriated to NIH pursuant
    to the COVID-19 response be directed to NICHD for research specific to
    COVID-19 and pregnancy. To date, no COVID-19 response funds have been
    directed to NICHD, limiting the Institute's ability to support critical
    and groundbreaking research on the impact of COVID-19 on pregnancy and
    pregnancy outcomes.
    Advancing Maternal Therapeutics at the NIH:
        Each year, more than 4 million women give birth in the United
    States and more than 3 million breastfeed. However, little is known
    about the effects of most drugs on the woman and her child. In 2015 as
    part of the 21st Century Cures Act (Sec. 2041 of Public Law 114-255),
    Congress created the Task Force on Research in Pregnant Women and
    Lactating Women (PRGLAC) to advise the Secretary of HHS on gaps in
    knowledge and research on safe and effective therapies for pregnant and
    breastfeeding women. In September 2018, PRGLAC produced a report to the
    Secretary outlining 15 recommendations to facilitate the inclusion of
    this population in clinical research. ACOG supports the implementation
    of these recommendations under the oversight of NICHD, working with
    other relevant NIH Institutes, the CDC, and the Food and Drug
    Administration, and urges Congress to express its continued support.
        ACOG also urges the Committee to ensure that additional funds
    appropriated to support vaccine development pursuant to the COVID-19
    response encourage the inclusion of pregnant and breastfeeding women,
    including women of color. Pregnant and breastfeeding women are
    currently excluded from these trials, placing them at risk of exclusion
    from eventual immunization or treatment recommendations.
    Title X Family Planning Program at Health Resources and Services
            Administration (HRSA):
        Family planning and pre-pregnancy care are imperative to ensuring
    healthy women and healthy pregnancies. The Title X Family Planning
    Program provides essential services to over 4 million low income men
    and women who may not otherwise have access to these services. For many
    individuals, particularly those who are low-income, uninsured, or
    adolescents, Title X is essential to their ability to affordably and
    confidentially obtain birth control, cancer screenings, STI tests and
    other basic care. From 2010-2016, Title X funding was cut by $31
    million, despite an increase of 1.5 million women in need of publicly
    funded family planning services over the same period. ACOG requests
    $400 million for Title X in fiscal year 2021 to ensure individuals in
    need have access to evidence-based care.
        ACOG is also deeply concerned about the impact of the Title X
    program rule, which has caused more than 1.5 million patients to lose
    access to medically accurate, comprehensive Title X-funded services,
    and urges Congress to show its strong support for women's health by not
    only funding this critical program but ensuring that no funds are used
    to implement the harmful final rule.
    Title V Maternal and Child Health Block Grant at HRSA:
        The Title V Maternal and Child Health (MCH) Block Grant at HRSA is
    a critical Federal program exclusively focused on improving the health
    of mothers and children. The Block Grant is a cost-effective,
    accountable, and flexible funding source used to address critical,
    pressing, and unique needs of maternal and child health populations in
    each state, territory and jurisdiction. Notably, through the Special
    Projects of Regional and National Significance (SPRANS) discretionary
    grant, the Block Grant supports the Alliance for Innovation on Maternal
    Health (AIM)--a program that works with states and hospital systems to
    implement evidence-based toolkits, or bundles, to improve maternal
    outcomes and reduce rates of maternal mortality and severe morbidity.
    ACOG requests at least $715 million for fiscal year 2021 to respond to
    the increased demands placed on the Block Grant, including $15 million
    within SPRANS to support continued implementation of AIM.
    Investing in Data and Quality at the Agency for Healthcare Research and
            Quality (AHRQ):
        AHRQ is the Federal agency with the sole purpose of improving
    healthcare quality. AHRQ produces data with the mission of making
    healthcare safer, higher quality, more accessible, equitable, and
    affordable. AHRQ works with HHS and other partners to ensure that the
    evidence improves patient safety. ACOG supports $471 million for AHRQ
    in fiscal year 2021, which is consistent with the fiscal year 2010
    funding level for the agency adjusted for inflation.
    Public Health Surveillance at CDC:
        Uniform, accurate, and comprehensive data is essential for
    addressing the rising rates of maternal mortality and severe maternal
    morbidity in the United States. Unfortunately, the nation's public
    health data systems are antiquated, lack interoperability and data and
    reporting standards, and are in dire need of security updates. The
    COVID-19 pandemic has demonstrated the shortcomings of these systems
    and the need for a robust public health infrastructure. ACOG urges
    Congress to demonstrate its commitment to public health surveillance
    and requests funding be used to modernize these systems to improve
    America's health. ACOG requests $100 million in fiscal year 2021 to
    implement advanced technologies and train the next generation of data
    scientists.
    Firearm Morbidity and Mortality Prevention (CDC and NIH):
        In 2017, there were more than 39,000 U.S. firearm-related
    fatalities. federally funded public health research has a proven track
    record of reducing public health-related deaths, whether from motor
    vehicle crashes, smoking, or Sudden Infant Death Syndrome. This same
    approach should be applied to increasing gun safety and reducing
    firearm-related injuries and deaths, and CDC research will be as
    critical to that effort as it was to these previous public health
    achievements. The foundation of a public health approach is rigorous
    research that can accurately quantify and describe the facets of an
    issue and identify opportunities for reducing its related morbidity and
    mortality. For fiscal year 2021, ACOG requests $50 million, shared
    evenly between CDC and NIH, to conduct public health research into
    firearm morbidity and mortality prevention.
    Diagnosing and Treating Maternal Depression (HRSA):
        About 1 in 5 women experience maternal depression, and ACOG
    recommends that all patients be screened, yet women face barriers to
    accessing treatment. ACOG commends Congress for fully funding Sec.
    10005 of Public Law 114-255 to support the establishment of a program
    at HRSA to expand depression screening and treatment for pregnant and
    postpartum women. ACOG urges you to again fully fund the program at $5
    million for fiscal year 2021.
    Advancing Women's Health During the COVID-19 Pandemic:
        ACOG commends Congress for its swift response to the COVID-19
    pandemic through appropriations to support the nation's public health
    response. This response, however, must not harm ongoing efforts to
    advance women's health. ACOG urges Congress to provide additional
    emergency funding to address the public health emergency or adjust the
    fiscal year 2021 budget caps to allow for continued response to the
    public health and medical needs of women, including pregnant and
    postpartum women. Without these adjustments, Congress risks compounding
    the harm of the pandemic by abandoning successful initiatives that
    advance women's health.
        Thank you again for the opportunity to submit our recommendations
    to the Subcommittee, and for your commitment to improving women's
    health.

        [This statement was submitted by Rachel Tetlow, Federal Affairs
    Director.]
                                     ______

            Prepared Statement of the American College of Physicians
        The American College of Physicians (ACP) is pleased to submit the
    following statement for the record on its priorities, as funded under
    the U.S. Department of Health & Human Services, for fiscal year 2021.
    ACP is the largest medical specialty organization and the second-
    largest physician group in the United States. ACP members include
    159,000 internal medicine physicians (internists), related
    subspecialists, and medical students. Internal medicine physicians are
    specialists who apply scientific knowledge and clinical expertise to
    the diagnosis, treatment, and compassionate care of adults across the
    spectrum from health to complex illness. As the Subcommittee begins
    deliberations on appropriations for fiscal year 2021, ACP is urging
    funding for the following proven programs to receive appropriations
    from the Subcommittee:
      --Health Resources Services Administration (HRSA), $8.8 billion;
      --Title VII, Section 747, Primary Care Training and Enhancement
            (PCTE), Health Resources and Services Administration (HRSA),
            $71 million;
      --National Health Service Corps (NHSC), $860 million in total program
            funding;
      --Agency for Healthcare Research and Quality (AHRQ), $471 million;
      --Centers for Medicare and Medicaid Services (CMS), Program
            Operations for Federal Exchanges, $268.9 million;
      --Centers for Disease Control and Prevention (CDC), $8.3 billion,
            Injury Prevention and Control, Research on Prevention of
            Firearms-related Injuries and Deaths, $50 million;
      --Public Health and Social Services Emergency Fund (PHSSEF); highest
            possible funding level over the fiscal year 2020 $2.7 billon
            enacted level;
      --National Institutes of Health (NIH), $44.7 billion.
        The United States is facing a shortage of physicians in key
    specialties, notably in general internal medicine and family medicine-
    the specialties that provide primary care to most adult and adolescent
    patients. Current projections indicate there will be a shortage of
    21,100 to 55,200 primary care physicians by 2032. Without critical
    funding for vital workforce programs, this physician shortage will only
    grow worse. HRSA is responsible for improving access to health-care
    services for people who are uninsured, isolated or medically
    vulnerable. Without critical funding for vital workforce programs, this
    physician shortage will only grow worse. A strong primary care
    infrastructure is an essential part of any high-functioning healthcare
    system, with over 100 studies showing primary care is associated with
    better outcomes and lower costs of care. Therefore we urge the
    Subcommittee to provide $8.8 billion for HRSA programs for fiscal year
    2021 to improve the care of medically underserved Americans by
    strengthening the health workforce.
        The health professions' education programs, authorized under Title
    VII of the Public Health Service Act and administered through HRSA,
    support the training and education of healthcare providers to enhance
    the supply, diversity, and distribution of the healthcare workforce.
    Within the Title VII program, we urge the Subcommittee to fund the
    Section 747 PCTE program at $71 million, in order to maintain and
    expand the pipeline for individuals training in primary care. While the
    College appreciates the $10 million increase to the program in fiscal
    year 2018, ACP urges more funding because the Section 747 PCTE program
    is the only source of Federal training dollars available for general
    internal medicine, general pediatrics, and family medicine. For
    example, general internists, who have long been at the frontline of
    patient care, have benefitted from PCTE training models emphasizing
    interdisciplinary training that have helped prepare them to work with
    other health professionals.
        The College urges at least $860 million in total program funding
    for the NHSC. For fiscal year 2021, the NHSC's funding situation is
    particularly dire and faces a funding cliff because its mandatory
    funding is set to expire. In fiscal year 2020, the NHSC received $120
    million in discretionary funding to expand and improve access to
    quality opioid and substance use disorder treatment in underserved
    areas, in addition to $310 million in mandatory funds. The NHSC awards
    scholarships and loan repayment to healthcare professionals to help
    expand the country's primary care workforce and meet the healthcare
    needs of underserved communities across the country. In fiscal year
    2019, with a field strength of over 13,000 primary care clinicians,
    NHSC members are providing culturally competent care to over 13 million
    patients at over 17,000 NHSC-approved healthcare sites in urban, rural,
    and frontier areas. These funds would help maintain NHSC's field
    strength helping to address the health professionals' workforce
    shortage and growing maldistribution. There is overwhelming interest
    and demand for NHSC programs, and with more funding, the NHSC could
    fill more primary care clinician needs. In fiscal year 2016, there were
    2,275 applications for the scholarship program, yet only 205 new awards
    were made. There were 7,203 applications for loan repayment and only
    3,079 new awards. Accordingly, ACP urges the subcommittee to double the
    NHSC's overall program funding to $860 million to meet this need.
        AHRQ is the leading public health service agency focused on
    healthcare quality. AHRQ's research provides the evidence-based
    information needed by consumers, clinicians, health plans, purchasers,
    and policymakers to make informed healthcare decisions. The College is
    dedicated to ensuring AHRQ's vital role in improving the quality of our
    nation's health and recommends a budget of $471 million, restoring the
    agency to its fiscal year 2010 enacted level adjusted for inflation.
    This amount will allow AHRQ to help providers help patients by making
    evidence-informed decisions, to fund research that serves as the
    evidence engine for much of the private sector's work to keep patients
    safe, to make the healthcare marketplace more efficient by providing
    quality measures to health professionals, and, ultimately, to help
    transform health and healthcare.
        ACP supports at least $268.9 million in discretionary funding for
    Federal exchanges within CMS' Program Operations, which has been funded
    at $2.8 billion in fiscal year 2020. This funding would allow the
    Federal Government to continue administering the insurance
    marketplaces, as authorized by the Affordable Care Act, if a state has
    declined to establish an exchange that meets Federal requirements. CMS
    now manages and operates some or all marketplace activities in over 30
    states. Without these funds it will be much more difficult for the
    Federal Government to operate and manage a federally-facilitated
    exchange in those states, raising questions about where and how their
    residents would obtain and maintain coverage.
        The Center for Disease Control and Prevention's mission is to
    collaborate to create the expertise, information, and tools needed to
    protect their health-through health promotion, prevention of disease,
    injury, and disability, and preparedness for new health threats. ACP
    supports $8.3 billion overall for this mission, especially in light of
    the COVID-19 national emergency. The College also supports $50 million
    for the CDC's Injury and Prevention Control to fund research on
    prevention of firearms-related injuries and deaths and support 10 to 20
    multi-year studies to continue to rebuild lost research capacity in
    this area.
        As the Federal Government responds to COVID-19, ACP supports the
    highest possible funding level for the PHSSEF in fiscal year 2021 over
    the $2.7 billion enacted in fiscal year 2020 for the Assistant
    Secretary for Preparedness and Response to continue efforts to
    research, prevent, control, and treat of illnesses associated with the
    SARS-CoV-2 virus through the National Disaster Medical System, the
    Strategic National Stockpile, the Hospital Preparedness Program,
    Biomedical Advanced Research and Development Authority, and Medical
    Reserve Corps. PHSSEF funding is crucial in providing personal
    protective equipment (PPE) to the physicians and other clinicians on
    the frontlines of the COVID-19 outbreak. The PHSSEF must be funded
    adequately enough to maintain a robust pandemic response, especially
    when emergency supplemental funds are no longer available.
        Lastly, the College strongly supports $44.7 billion for NIH in
    fiscal year 2021 so the nation's medical research agency continues
    making important discoveries that treat and cure disease to improve
    health and save lives and that maintain the United States' standing as
    the world leader in medical and biomedical research.
        The College greatly appreciates the support of the Subcommittee on
    these issues and looks forward to working with Congress on the fiscal
    year 2021 appropriations process.

        [This statement was submitted by Jared Frost, Senior Associate,
    Legislative
    Affairs, American College of Physicians.]
                                     ______

       Prepared Statement of the American College of Preventive Medicine
        The American College of Preventive Medicine (ACPM) urges the Senate
    Labor, Health and Human Services, Education, and Related Agencies
    Appropriations Subcommittee to support training for preventive medicine
    physicians and other public health professionals by providing $23.359
    million in fiscal year 2020 to the Heath Resources and Services
    Administration (HRSA) for the Public Health and Preventive Medicine
    line item in Title VII of the Public Health Service Act.
        In today's healthcare environment, especially during the COVID-19
    pandemic, the tools and expertise provided by preventive medicine
    physicians play an integral role in ensuring the effective functioning
    of our nation's public health system. These tools and skills include
    the ability to deliver evidence-based clinical preventive services,
    expertise in population-based health sciences, and knowledge of the
    social and behavioral determinants of health and disease. These are the
    tools employed by preventive medicine physicians who practice at the
    health system level where improving the health of populations,
    enhancing access to quality care, and reducing the costs of medical
    care are paramount. As the body of evidence supporting the
    effectiveness of clinical and population-based interventions continues
    to expand, so does the need for specialists trained in preventive
    medicine.
        Organizations across the spectrum have recognized the growing
    demand for preventive medicine professionals. The Institute of Medicine
    released a report in 2007 calling for an expansion of preventive
    medicine training programs by an ``additional 400 residents per year,''
    and the Accreditation Council on Graduate Medical Education (ACGME)
    recommends increased funding for preventive medicine residency training
    programs.
        Preventive medicine is the only one of the 24 medical specialties
    recognized by the American Board of Medical Specialties that requires
    and provides training in both clinical and population-based medicine.
    Preventive medicine residency training programs provide a blueprint on
    how to train our future physician workforce; physicians trained to
    provide individual patient care needs as well as practice at the
    community and population level to identify and treat the social
    determinants of health. Preventive medicine physicians have the
    training and expertise to advance the population health outcomes that
    public and private payers are increasingly promoting to their
    providers. These physicians have a strong focus on quality care
    improvement and are at the forefront of efforts to integrate primary
    care and public health.
        According to HRSA, and health workforce experts, there are
    personnel shortages in many public health occupations, including
    epidemiologists, biostatisticians, and environmental health workers
    among others. According to the 2018 Physician Specialty Data Book
    released by the Association of American Medical Colleges, preventive
    medicine is one of only six specialties that saw a decrease in the
    number of active physicians between 2012 and 2017. This represents a
    worsening trend in the number of preventive medicine physicians in the
    field that is not due to a lack of interest or need, but is due to a
    lack of funding. Nearly 70 percent of preventive medicine physicians
    are over age 55, and the funding gaps mean that there are not enough
    entering the field to make up for the current and expected future
    shortage. ACPM is deeply concerned about the shortage of preventive
    medicine-trained physicians and the ominous trend of even fewer
    training opportunities. This deficiency in physicians trained to carry
    out core public health activities will lead to major gaps in the
    expertise needed to deliver clinical prevention and community public
    health services. The impact on the health of those populations served
    by HRSA is likely to be profound.
        Despite being recognized as an underdeveloped national resource and
    in shortage for many years, physicians training in the specialty of
    Preventive Medicine are the only medical residents whose graduate
    medical education (GME) costs are not supported by Medicare, Medicaid
    or other third party insurers. Training occurs outside hospital-based
    settings and therefore is not financed by GME payments to hospitals.
    Both training programs and residency graduates are rapidly declining at
    a time of unprecedented national, state, and community need for
    properly trained physicians in public health, disaster preparedness,
    prevention-oriented practices, quality improvement, and patient safety.
        Currently, residency programs scramble to patch together funding
    packages for their residents. Support for faculty and tuition has been
    almost non-existent. Directors of residency programs note that they
    receive many inquiries about and applications for training in
    preventive medicine; however, training slots often are not available
    for those highly qualified physicians who are not directly sponsored by
    an outside agency or who do not have specific interests in areas for
    which limited stipends are available (such as research in cancer
    prevention). HRSA--as authorized in Title VII of the Public Health
    Service Act--is a critical funding source for several preventive
    medicine residency programs, as it represents the largest Federal
    funding source for these programs.
        Of note, the preventive medicine residency programs directly
    support the mission of the HRSA health professions programs by
    facilitating practice in underserved communities and promoting training
    opportunities for underrepresented minorities:
      --Seventy-seven percent of HRSA-supported preventive medicine
            graduates practice in medically underserved communities.
      --Nearly half of preventive medicine training sites funded through
            HRSA programs were are located in medically underserved
            communities.
        In addition to training under-represented minorities and physicians
    who work in medically underserved areas, preventive medicine residency
    programs equip our society with health professionals and public health
    leaders who possess the tools and skills needed in the fight against
    the chronic disease epidemic that is threatening the future of our
    nation's health and prosperity. Chronic diseases currently cost the
    U.S. billions of dollars per year, including heart disease and stroke
    ($315.4 billion per year), diabetes ($245 billion per year), and
    obesity-related diseases ($145 billion per year). Correcting the root
    causes of this critical problem of chronic diseases will require a
    multidisciplinary approach that addresses issues of access to
    healthcare; social and environmental influences; and behavioral
    choices. Any efforts to strengthen the public health infrastructure and
    transform our communities into places that encourage healthy choices
    must include measures to strengthen the existing training programs that
    help produce public health leaders.
        Further, expanding the preventive medicine workforce strengthens
    the disaster preparedness capabilities we must have to ensure our
    nation's health security. Vulnerable populations, including those in
    poor health, with disabilities, and chronic diseases are at an
    increased risk of adverse health outcomes resulting from natural
    disasters. New threats are always on the horizon and some, like the
    Zika virus, require preventive medicine specialists working to find
    ways to stop the spread before it becomes an epidemic.
        Many of the leaders of our nation's local and state health
    departments are trained in preventive medicine. Their unique
    combination of expertise in both medical knowledge and public health
    makes them ideal choices to head the fight against chronic disease as
    well as other threats to our nation's health, such as the opioid
    epidemic. Their contributions are invaluable. Investing in the
    residency programs that provide physicians with the training and skills
    to take on these leadership positions is an essential part of keeping
    Americans healthy and productive. As such, the American College of
    Preventive Medicine urges the Labor, Health and Human Services,
    Education, and Related Agencies Appropriations Subcommittee to reaffirm
    its support for training preventive medicine physicians and other
    public health professionals by providing $23.359 million in fiscal year
    2021 to HRSA for the Public Health and Preventive Medicine line item in
    Title VII of the Public Health Service Act.

        [This statement was submitted by Kate McFadyen, Director,
    Government Affairs.]
                                     ______

             Prepared Statement of the American College of Surgeons
        Chairman Blunt, Ranking Member Murray, and Members of the
    Subcommittee, on behalf of the more than 82,000 members of the American
    College of Surgeons (ACS), thank you for the opportunity to submit
    written testimony addressing fiscal year 2021 appropriations. The ACS
    is a scientific and educational organization of surgeons that was
    founded in 1913 to raise the standards of surgical practice and improve
    the quality of care for all surgical patients. The College is dedicated
    to the ethical and competent practice of surgery. Its achievements have
    significantly influenced the course of scientific surgery in America
    and have established it as an important advocate for all surgical
    patients.
        The ACS respectfully requests your consideration of the following
    priorities as the Subcommittee works through the annual appropriations
    process for fiscal year 2021:
    MISSION ZERO Military and Civilian Partnership for the Trauma Readiness
            Grant Program
        Trauma, including car crashes, falls, head injuries, burns, and
    firearm injuries, is the leading cause of death in America for those
    ages 44 and younger and accounts for more years of life lost and
    disability than any other disease, including cancer and heart disease.
    Unfortunately, nearly 45 million Americans live in areas more than an
    hour away from either a Level I or II trauma center. Ensuring access to
    trauma care requires many crucial components including trauma centers
    and appropriately trained physicians and nurses, all of which must
    dedicate extensive resources around the clock so that seriously injured
    patients have the best possible chance for survival.
        In 2016, the National Academies of Science, Engineering, and
    Medicine (NASEM) released a report titled, ``A National Trauma Care
    System: Integrating Military and Civilian Trauma Systems to Achieve
    Zero Preventable Deaths After Injury.'' This report suggests one of
    four military trauma deaths and one of five civilian trauma deaths
    could be prevented if advances in trauma care reach all injured
    patients. The report concludes that military and civilian integration
    is critical to saving these lives both on the battlefield and at home,
    preserving the hard-won lessons of war, and maintaining the nation's
    readiness and homeland security.
        The MISSION ZERO Act was signed into law on June 24th, 2019 as part
    of S. 1279, the Pandemic and All Hazards Preparedness and Advancing
    Innovation (PAHPAI) Act (Public Law No: 116-22). MISSION ZERO takes the
    recommendations of the NASEM report to create a U.S. Department of
    Health and Human Services (HHS) grant program to cover the
    administrative costs of embedding military trauma professionals in
    civilian trauma centers. These military-civilian trauma care
    partnerships will allow military trauma care teams and providers to
    gain exposure to treating critically injured patients and increase
    readiness for when these units are deployed. Similarly, best practices
    from the battlefield are brought home to further advance trauma care
    and provide greater civilian access.
        By facilitating the implementation of military-civilian trauma
    partnerships, this program will preserve lessons learned from the
    battlefield, translate those lessons to civilian care, and ensure
    service members maintain their readiness to deploy in the future. The
    ACS strongly supports the funding of MISSION ZERO at the authorized
    amount of $11.5 million for fiscal year 2021.
    Funding for Cancer Research and Prevention
        The ACS and the Commission on Cancer (CoC) are dedicated to
    improving survival and quality of life for cancer patients through
    advocacy of issues pertaining to prevention and research. To continue
    the progress that has led to medical breakthroughs for treatment
    therapies for millions of cancer patients, the ACS and CoC support the
    following funding increases for fiscal year 2021.
        The budget of the National Institutes of Health (NIH) should be
    increased to at least $44.7 billion (a $3 billion increase), including
    $6.9 billion for the National Cancer Institute (NCI). The ACS also
    urges the inclusion of $555 million for cancer control and prevention
    programs and $70 million for the National Program of Cancer Registries
    (NPCR) through the Centers for Disease Control and Prevention (CDC).
        Additionally, the ACS asks you to consider the inclusion of the
    following report language recognizing the importance of the American
    College of Surgeons Cancer Programs, which benefit an array of
    healthcare professionals, patients, and facilities through standard-
    setting, accreditation, and educational activities.
        Quality Care for Cancer.--The Committee recognizes the importance
    of voluntary accreditation by the American College of Surgeons Cancer
    Programs, which provide tools, resources, and data to enable cancer
    programs to deliver comprehensive, high-quality, multidisciplinary,
    evidence-based, patient-centered care to patients with cancer and
    diseases of the breast. This voluntary accreditation program includes
    several key modules, including those focused generally on cancer,
    breast cancer and diseases of the breast, rectal cancer, and data
    sharing and performance accountability. The Committee applauds the work
    of the American College of Surgeons Cancer Programs and encourages
    facilities to seek its accreditation to support performance evaluation
    and inform quality care improvements.
    Firearm Morbidity and Mortality Prevention Research
        The ACS supports an appropriations request of $50 million
    specifically for public health research into firearm morbidity and
    mortality prevention through the CDC for fiscal year 2021.
        Federally funded research from the perspective of public health has
    contributed to reductions in motor vehicle crashes, smoking, and Sudden
    Infant Death Syndrome (SIDS). ACS believes a similar approach could
    reduce firearm-related injuries and deaths in our communities.
    Repeal the Ban on UPI
        A Unique Patient Identifier (UPI) would help to ensure that
    surgeons have a more accurate and consistent means of linking patients
    to their health information across the continuum of care. Repealing the
    twenty-year prohibition on the use of Federal funds to establish a
    national UPI would provide HHS with the ability to evaluate a range of
    patient identification solutions, enabling the agency to explore
    potential challenges and identify cost-effective, scalable, and secure
    solutions that protect patient privacy. The ACS supports removal of the
    ban in Section 510 that prohibits HHS from spending any Federal dollars
    to promulgate or adopt a unique patient identifier (UPI).
        Thank you for your consideration of our requests. Please contact
    Amelia Suermann, ACS Congressional Lobbyist, at asuermann@facs.org if
    you have any questions or would like additional information.
                                     ______

             Prepared Statement of the American Dental Association
        On behalf of the American Dental Association (ADA) and our more
    than 163,000 members, thank you, Chairman Blunt, Ranking Member Murray
    and members of the Subcommittee for the opportunity to submit testimony
    in support of Federal agencies and programs that work to expand access
    to oral healthcare. Within the Department of Health and Human Services,
    the American Dental Association is requesting for fiscal year 2021
    (fiscal year 2021), $29 million for the Centers for Disease Control and
    Prevention (CDC) Division of Oral Health; $40 million for the Health
    Resources and Services Administration (HRSA) Oral Health Workforce
    Development, including $24 million for Pediatric and General Dental
    Residency programs; and $512 million for the National Institute of
    Dental and Craniofacial Research (NIDCR) in the National Institutes of
    Health (NIH). COVID-19 has highlighted the need for a strong public
    health infrastructure. The following programs and efforts are important
    to the foundation and future of oral health and dental care.
                          action for dental health act
        The ADA applauds Congress for the passage of the Action for Dental
    Health (ADH) Act to help ensure greater access to dental care for all
    Americans. As you weigh ADA's funding requests for CDC and HRSA, please
    consider ADH (Public Law 115-302, section 3) among the programs that
    additional funding would support. The new law allows the CDC Division
    of Oral Health and HRSA Oral Health Workforce Development program to
    expand their roles in dental prevention, education, and continuity of
    care in underserved communities. These efforts would include
    initiatives such as the Community Dental Health Coordinator (CDHC) and
    Emergency Department (ED) Referral programs. CDHCs are community health
    workers who are members of the dental team. CDHCs provide oral health
    prevention and education, care coordination, and patient navigation
    services to people in underserved urban, rural, and Native American
    communities. CDHCs serve in numerous community settings including,
    health centers, private practices, schools and Head Start programs. In
    a post-pandemic future, the role of CDHCs is even more critical to help
    families reconnect with their dentists and re-establish their dental
    treatment routines. CDHCs also play an important role in keeping
    patients out of the ED by connecting them to other sources of care. In
    2017, there were 2.1 million visits to EDs for dental-related reasons,
    at a cost of $2.7 billion.\1\ There are seven different ED referral
    program models where the EDs form alliances with graduate dental
    education programs, non-profit agencies, community health centers, and/
    or private dental practices. By referring patients to an ongoing and
    comprehensive source of dental treatment, these programs are reducing
    costs and helping to decrease opioid abuse.
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        \1\ American Dental Association Health Policy Institute. Emergency
    Department Visits for Dental Conditions-A Snapshot. https://
    www.ada.org/en/science-research/health-policy-institute/publications/
    infographics?utm_source=adaorg&utm_medium=hpifeaturedbox&utm_content=
    infographics.
    ---------------------------------------------------------------------------
                   cdc division of oral health ($29 million)
        The CDC Division of Oral Health is a much needed and highly valued
    source of support for state health departments to help reduce oral
    health disparities through evidence-based community preventive
    interventions and access to clinical preventive services. The
    Division's investment in programs like oral health surveillance,
    community water fluoridation, school-based dental sealant programs, and
    oral health literacy has helped to significantly reduce the incidence
    of oral disease among children and adults. In order to expand the
    Division's capacity and outreach, more funding is needed to support
    additional states with the infrastructure to develop and implement
    policies and programs to prevent or minimize oral disease. Currently 20
    states, including Alabama and New Mexico, which have some of the
    highest poverty rates, have never received funding from the Division of
    Oral Health. Additional funding would provide these states with the
    capacity and infrastructure needed to translate health promotion and
    disease prevention approaches into effective policies and healthcare
    practices where all Americans benefit. Also, the Division's
    contributions in the CDC response to COVID-19 has guided the dental
    community through the uncertainty of the nation's public health
    emergency. The dental community continues to look to the CDC and the
    Division of Oral Health for further guidance as states begin to reopen.
                 hrsa--title vii, general and pediatric dental
                        residency programs ($24 million)
        Within the amount requested for HRSA's Oral Health Workforce
    Development Program, the ADA requests $24 million for Title VII--
    General and Pediatric Dental Residencies. This amount includes funding
    for the Dental Faculty Loan Repayment Program. Title VII is the only
    Federal program focused on improving the supply, distribution, and
    diversity of the dental profession workforce. By providing advanced
    training opportunities to oral health professionals, the program plays
    a critical role in helping the workforce adapt to meet the nation's
    changing healthcare needs. We are pleased that Congress understands the
    importance of this program and the impact that it has on medically
    underserved communities.
                           hrsa--chief dental officer
        The ADA believes that HRSA needs a leading voice on oral health to
    oversee and lead all oral health programs and initiatives across the
    agency. In 2012, the Chief Dental Officer (CDO) position was downgraded
    to a senior dental advisor and moved several layers below HRSA
    leadership without appropriate staff or resources. This occurred
    despite the Administration's commitment in 2010 to establish the Oral
    Health Initiative, which highlighted several HRSA programs to improve
    access to oral healthcare, especially for underserved populations. We
    thank the Subcommittee for its strong support directing HRSA to
    reinstate the CDO with executive level authority. However, while the
    title was restored in 2017, the function of the position remains
    unchanged. We urge the Subcommittee to direct HRSA to fully restore
    this position with the appropriate duties of a chief dental officer.
                           nih--nidcr ($512 million)
        We extend our gratitude to Congress for supporting NIDCR research
    over the years. Because of your efforts, NIDCR continues to conduct and
    support research on some of our nation's most pressing public health
    issues contributing to better oral and overall health for all
    Americans. Those efforts include contributing to the knowledge base on
    pain biology and management, including non-opioid treatments for pain;
    salivary diagnostics; and the social, behavioral, and genetic
    underpinnings of oral health disparities. The COVID-19 pandemic has
    been a stark reminder of the crucial role that biomedical and public
    health research play in our society. The research enterprise is
    essential to safeguarding public health, national security, economic
    growth and competitiveness in global scientific leadership. While
    research institutions are understandably concentrating on coronavirus-
    related research, most other research has been scaled back or stopped
    entirely due to pandemic-induced closures of university campuses and
    laboratories. The longer this pandemic continues, the more harm and
    strain it will cause to our nation's research workforce and
    capabilities; sustaining its strength will be vital if the United
    States is to remain a leader in global research and in its ability to
    respond to future public health crises. This funding request--in
    addition to our emergency supplemental request of $170 million and $90
    million--would help restore NIDCR research to pre-pandemic levels and
    help align the agency's research agenda to reflect the new reality of
    COVID-19 and the impact it will have on the practice of dentistry and
    oral health. We respectfully request your continued support for NIDCR.
        Chairman Blunt and Ranking Member Murray, thank you for the
    opportunity to share with you and the Subcommittee the importance of
    access to dental care and the programs needed to help meet the nation's
    changing oral healthcare needs. We understand the difficult task you
    face as you put together the fiscal year 2021 Labor-HHS-Education-
    Appropriations bill in the current environment of tight budget
    constraints while dealing with a public health crisis. The ADA looks
    forward to working with the Subcommittee in maintaining oral health as
    a priority in healthcare.
                                     ______

        Prepared Statement of the American Dental Education Association
        The American Dental Education Association (ADEA) represents all 68
    U.S. dental schools, more than 1,000 allied and advanced dental
    education programs, over 60 corporate partners and more than 20,000
    individuals. ADEA submits this testimony on the Departments of Health
    and Human Services, Education and Related Agencies budget for the
    record and for your consideration as you begin prioritizing fiscal year
    2021 appropriation requests.
        According to the Health Resources and Services Administration
    (HRSA), 59 million Americans live in one of the nearly 6,319 dental
    care Health Professional Shortage Areas (HPSAs). To close this gap,
    HRSA estimates that over 10,495 new practitioners are needed.
        Dental schools have suffered the same challenges that other health
    profession education institutions have faced related to the coronavirus
    pandemic. ADEA is grateful for the support from the Committee on
    Appropriations and the Congress in establishing the Providers Relief
    Fund and look forward to working with you further to address the
    infrastructure and modernization needs that will be required as we move
    toward reopening our facilities and dental clinics.
        Before these schools and programs can fully reopen for patient
    care, most will require some modification to clinic spaces and
    protocols. For dental students, patient care experience is obtained in
    dental clinics, which are in all dental schools. These clinics must
    include most of the major service areas of a hospital and adhere to the
    rigorous guidelines that protect the health and safety of the public,
    much like hospitals do. Dental schools operate full clinical facilities
    with all the necessary treatment rooms and surgical suites, including
    areas for sterilization, diagnostic services such as radiology and
    pathology, and business operations. In contrast, medical schools
    conduct the majority of their clinical teaching and training in
    separate hospitals or affiliated academic health centers and do not
    require the stringent protective guidelines in their education
    buildings that are in place at dental school clinics.
        Many dental schools are part of the same campus as the medical
    schools which are often in underserved communities. Dental schools also
    exist within Minority Serving Institutions.
        During this crisis, some dental school clinics have been
    retrofitted to accommodate hospital beds to assist the academic medical
    centers, which are operating above capacity. Also, dental faculty and
    residents who remain on campus to treat dental emergencies have
    volunteered in many medical centers or hospitals to evaluate patients
    coming to the ER and perform other duties within their scope of
    practice (administering COVID-19 tests, for instance).
        Dental schools are part of their local communities' healthcare
    safety net and are a valuable untapped healthcare resource that could
    be used at this time, and in future pandemics. Dental school clinics
    serve the same geographic patient populations as their medical
    colleagues, providing care at reduced rates. A large number of the
    individuals who receive dental care in these clinics are members of
    underserved populations and do not have private insurance or the
    ability to pay private practice fees.
        As you deliberate funding for fiscal year 2021, ADEA respectfully
    urges your support for the following funding requests.
    $40.7 million: Title VII, Section 748, Public Health Service Act
        The dental programs in Title VII provide critical education for
    pre-doctoral dental and dental hygiene students and training for post-
    doctoral residents in general, pediatric and public health dentistry.
    Support for these programs will help ensure an adequately prepared and
    culturally competent dental workforce. The funding supports the
    investment made by Title VII in educating dentists, dental therapists,
    dental hygienists, dental assistants and dental laboratory technicians.
    The program also expands access to care for underserved areas in
    community-based settings located in HPSAs.
        HRSA programs address the dental school faculty shortage with
    Dental Faculty Development and Dental Faculty Loan Repayment Program
    grants to those who teach pediatric, general or public health
    dentistry, and dental hygiene. Currently, more than 250 open, budgeted
    faculty positions exist in dental schools. These programs assist
    schools with recruiting and retaining faculty. Additionally, ADEA is
    increasingly concerned that the dental research community will not be
    able to attract and grow the pipeline of new researchers into academic
    dental institutions without this support and recognition of its
    importance.
        Title VII Diversity and Student Aid programs play a critical role
    in ensuring the future health profession workforce reflects the
    nation's changing demographics. For the last several years, these
    programs have not received adequate funding to sustain the progress
    necessary to meet the challenges of an increasingly diverse U.S.
    population.
        The Health Careers Opportunity Program (HCOP) provides a vital
    source of support for dental professionals serving underserved and
    disadvantaged patients by providing a pipeline for individuals from
    these populations. This unique workforce program encourages young
    people from diverse and disadvantaged backgrounds to explore careers in
    healthcare generally, and dentistry specifically. ADEA and the
    Association of American Medical Colleges, through the funding of the
    Robert Wood Johnson Foundation, operate the Summer Health Professions
    Education Program (SHPEP), a six-week academic enrichment program for
    rising college sophomores and juniors from historically
    underrepresented (HUR) populations who are interested in the health
    professions. A study of participants from 2006 to 2015 found that 65
    percent applied to dental school and, as of 2015, 589 have graduated
    from dental school. These pipeline programs are effective in attracting
    HUR individuals. ADEA requests that funding for HCOP be continued.
        The Area Health Education Centers (AHEC) program enhances high-
    quality, culturally competent care in community-based interprofessional
    clinical training settings. The infrastructure development grants and
    point-of-service maintenance and expansion grants ensure that patients
    from underserved populations receive quality care and health
    professionals receive experience working with diverse populations. ADEA
    strongly encourages the Committee to continue funding the vitally
    important AHEC program.
    $512 million: National Institute of Dental and Craniofacial Research
        Dental research serves as the foundation of the dental professions.
    Discoveries stemming from dental research have reduced the burden of
    oral diseases, led to better dental health for millions of Americans,
    and uncovered important links between oral and systemic health. ADEA
    and dental school researchers are grateful for the increase NIDCR
    received in fiscal year 2020; however, we note that NIDCR continues to
    have the smallest budget of all the Institutes.
        The requested increase for fiscal year 2021 will not bring us to
    parity, but it will bring us closer and provide the stable and
    consistent growth that Dr. Collins seeks for research. Through NIDCR
    grants, dental researchers in academic dental institutions have
    enhanced the quality of the nation's dental and overall health. Dental
    researchers are poised to make dramatic breakthroughs, such as
    restoring natural form and function to the mouth and face as a result
    of disease, accident, or injury, and diagnosing systemic disease (such
    as HIV and certain types of cancer) from saliva instead of blood and
    urine samples. These breakthroughs, and countless others that bolster
    America's role as a global scientific leader, require adequate funding.
    $29 million: Centers for Disease Control and Prevention (CDC) Division
            of Oral Health
        The CDC Division of Oral Health expands the coverage of effective
    prevention programs. The Division increases the basic capacity of state
    oral health programs to accurately assess the needs of the state,
    organize and evaluate prevention programs, develop coalitions, address
    oral health in state health plans, and effectively allocate resources
    to the programs. This strong public health response is needed to meet
    the challenges of dental disease affecting children and vulnerable
    populations. The current path of decreased funding will have a
    significant negative effect on the overall health and preparedness of
    the nation's states and communities.
    $18 million: Ryan White HIV/AIDS Treatment and Modernization Act, Part
            F: Dental Reimbursement Program (DRP) and Community-Based
            Dental Partnerships Program
        Patients with compromised immune systems are more prone to oral
    infections, such as periodontal disease and caries (tooth decay). The
    DRP is a cost-effective Federal/institutional partnership that provides
    partial reimbursement to academic dental institutions for costs
    incurred from providing dental care to people living with HIV/AIDS.
    Simultaneously, the program provides educational and training
    opportunities to dental students, residents and allied dental students.
    However, DRP reimbursement only averages 26 percent of the dental
    schools' unreimbursed costs. The current reimbursement rate is
    unsustainable long-term. Adequate funding of the Ryan White Part F
    programs will help ensure that people living with HIV/AIDS receive
    necessary dental care.
        ADEA thanks you for your consideration of these funding requests
    and looks forward to working with you to ensure the continuation of
    these critical programs and improve the oral and systemic health and
    well-being of the nation. Please consider ADEA a resource on any matter
    pertaining to academic dentistry and education of the dental workforce
    under your purview. For additional information, please contact B.
    Timothy Leeth, ADEA Chief Advocacy Officer, at leetht@adea.org.
                                     ______

            Prepared Statement of the American Diabetes Association
        For fiscal year 2021, the American Diabetes Association (ADA) urges
    the Subcommittee to increase its investment in diabetes research and
    prioritize funding for diabetes prevention to help stop the diabetes
    epidemic in our country. This is best accomplished by the Subcommittee
    providing funding levels of $2.25 billion for the National Institute of
    Diabetes and Digestive and Kidney Diseases (NIDDK) at the National
    Institutes of Health (NIH), $185 million for the Division of Diabetes
    Translation (DDT) at Centers for Disease Control and Prevention (CDC),
    and $35 million for the National Diabetes Prevention Program (National
    DPP) at CDC.
        Over 34 million Americans live with diabetes and an additional 88
    million Americans have prediabetes. Diabetes is personal to me as I
    have had type 1 diabetes almost my entire life (since age 5) and have
    two sons who were diagnosed with type 1 diabetes in their early teenage
    years. Additionally, I have spent over 40 years as a physician
    scientist at the University of Colorado School of Medicine and have
    focused on advancing the science and medicine of diabetes. Research is
    so important as it drives the unknown and allows researchers, like me,
    to keep learning and gaining new knowledge. Thanks to medical
    discoveries and advancements at the NIH and translation research from
    the CDC, diabetes care has advanced tremendously in recent years and
    has improved the quality of life and life expectancy for the millions
    of individuals with diabetes.
        Although insulin was discovered nearly a century ago, we are still
    at the beginning of diabetes care. Newer insulins are available,
    providing more options than we had in 1922, but we still see the impact
    of the disease both in complications directly attributable to the
    disease--blindness, kidney disease, amputations, cardiovascular
    diseases--and in problems stemming from the stressors caused by the
    disease, including increased depression among people with diabetes. The
    only way to reverse the troubling consequences of the disease is better
    research into understanding and treating diabetes.
        NIH is the single most important funding source for diabetes
    research. As a researcher, NIDDK funding has allowed me to study two
    major unanswered questions regarding diabetes and impact of diabetes on
    lipid and lipoprotein metabolism. Major unanswered questions among many
    include why some children and adults with genetic predisposition to
    type 1 diabetes develop diabetes, i.e. what are the environmental
    influences for the etiology of type 1 diabetes? A major task also
    relates to the etiology of type 2 diabetes, i.e. why beta cells do not
    respond to the insulin resistance that occurs in people who are obese
    and do not develop type 2 diabetes? We need the continuation of robust
    funding for NIDDK in support of dedicated research to provide the best
    hope both for those who have been living with diabetes for decades,
    fortunately like me, and for those who are newly diagnosed.
        The human cost of diabetes is significant. The lifetime risk for
    developing diagnosed diabetes among U.S. adults is 40 percent. Today
    alone, 4,110 Americans will be diagnosed with diabetes, diabetes will
    cause 295 to undergo an amputation, and 137 will enter end-stage kidney
    disease treatment due to diabetes. Every 80 seconds an adult with
    diabetes is hospitalized in the U.S. for heart disease and every 2
    minutes an adult with diabetes is hospitalized with stroke. People
    living with diabetes are twice as likely to develop and die from
    cardiovascular disease. In addition to the physical toll, diabetes is
    economically devasting in our country and for individuals impacted by
    the disease. Released in March 2018, ``Economic Costs of Diabetes in
    the U.S. in 2017,'' found the total annual cost of diagnosed diabetes
    in our country has skyrocketed by an astonishing 26 percent over 5
    years, to $327 billion. This is unsustainable for our nation,
    especially when 1 in 3 Medicare dollars is already spent caring for
    people with diabetes and people with diagnosed diabetes have healthcare
    costs 2.3 times higher than those without diabetes. Despite the
    escalating physical and economic cost of diabetes to our nation and
    families, the Federal investment in diabetes research and prevention
    programs at the NIH and CDC still falls short of the need. The state of
    our nation's diabetes epidemic justifies increased Federal funding in
    fiscal year 2021.
                                   background
        Diabetes is a chronic disease that impairs the body's ability to
    utilize food. The hormone insulin, which is made in the pancreas, is
    needed for the body to convert food into energy. In people with
    diabetes, the pancreas fails to produce insulin (type 1 diabetes), or
    it does not create enough insulin to overcome cells that are resistant
    to insulin (type 2 diabetes). Diabetes results in too much glucose in
    the blood stream. Additionally, up to 9.2 percent of pregnancies are
    affected by gestational diabetes, a form of glucose intolerance
    diagnosed during pregnancy that places both mother and baby at risk for
    complications and for type 2 diabetes later in life.
        Diabetes does not have a cure, and management is necessary every
    single day. People with diabetes make over 300 decisions about their
    disease in a single day. They must carefully balance what they eat,
    when they eat, when and how much they exercise, and manage insulin
    injections constantly, knowing that one decision impacts all the
    others. In my experience, individuals with diabetes can in part
    overcome these challenges due to the advances with technology and are
    able to carefully balance out the decisions they make daily.
     national institute of diabetes, digestive, and kidney diseases at nih
        ADA requests funding of $2.25 billion for NIDDK in fiscal year 2021
    because NIDDK is responsible for major research breakthroughs that have
    revolutionized how diabetes is treated and managed. People with
    diabetes, including myself and my sons, can now use a variety of
    insulin formulations, insulin infusion pumps, continuous glucose
    monitoring (CGM) sensors, and regimens far superior to those used in
    the past, which has significantly reduced the risk for serious
    complications of diabetes
        Although NIDDK research has led to the development of CGMs and
    insulin pumps, which are life-changing managements tools for patients,
    there is even more promising research that Congress needs to fund.
    Diabetes researchers across the country are working on fruitful
    proposals that can lead to the goal--a cure for this devasting disease.
    NIDDK would be able to fund additional investigator-initiated research
    grants to meet critical needs in areas with increased funding. This
    includes: research biomarkers that can improve the treatment of
    diabetic foot ulcers and ultimately reduce lower-limb amputations;
    better understand gestational diabetes; the continued progress on the
    artificial pancreas; understanding the relationship between diabetes
    and neuro-cognitive conditions like dementia and Alzheimer's disease;
    and study important emerging areas such as the incidence of type 2
    diabetes in youth and artificial pancreas systems, particularly in
    underrepresented populations. Mechanisms that relate to how diabetes
    increases the risk of eye/kidney/nervous system complications, and
    importantly cardiovascular disease is also under the purview of NIDDK.
                the division of diabetes and translation at cdc
        The Federal Government's efforts to prevent diabetes and its
    serious complications through the DDT and its evidenced-based, outcome-
    focused diabetes programs are essential to help stop the diabetes
    epidemic. DDT's mission is to eliminate the preventable burden of
    diabetes through research, education, and by translating science into
    clinical practice. DDT has a proven record of success in primary
    prevention efforts, as well as programs to help those with diabetes
    manage their disease and complications.
        The ADA urges Congress to provide DDT with $185 million in fiscal
    year 2021. The increased funding will allow DDT to continue diabetes
    prevention activities at the state and local levels. Additionally,
    increased funding will support these efforts through the State and
    Local Public Health Actions to Prevent Obesity, Diabetes, and Heart
    Disease grants, which focus on improving prevention at the community
    and health systems levels in populations with the highest risk for
    diabetes; diabetes prevention efforts under the State Public Health
    Actions grant program for cross-cutting approaches to prevent and
    control diabetes, heart disease, and stroke; and allow for DDT to
    translate research into more effective ways to prevent and treat
    diabetes in communities and continue its valuable diabetes surveillance
    work. DDT's surveillance work includes integrating and modernizing the
    data collection CDC receives regarding prediabetes determining best
    practices and addressing social determinates of health.
                the national diabetes prevention program at cdc
        It is alarming that 88 million Americans have prediabetes and are
    on the cusp of developing type 2 diabetes. Nine out of ten individuals
    with prediabetes do not know they have it, and within 5 years 15-30
    percent of individuals with prediabetes will develop type 2 diabetes.
    The National DPP managed by the CDC, can make progress in lowering the
    incidence of diabetes in high-risk populations. The National DPP is
    made up of a combination of public-private partnership of community
    organizations, private insurers, employers, healthcare organizations,
    faith-based organizations, and government agencies. This national
    network of local sites provides trained staff, who work with
    individuals who have a high risk of developing type 2 diabetes, with
    cost-effective, group-based lifestyle intervention programs.
        The National DPP grew out of a successful NIDDK clinical study
    showing weight loss of 5-7 percent of body weight, achieved by reducing
    calories and increasing physical activity to at least 150 minutes,
    reduced the risk of developing type 2 diabetes by 58 percent in people
    with prediabetes, and by 71 percent for those over 60 years old. Also,
    the DPP conducted additional translational research, which showed the
    National DPP works in the community setting, at a lower cost of about
    $425 per participant.
        The ADA urges Congress to provide $35 million for the National DPP
    in fiscal year 2021 to continue its nationwide expansion. It is
    imperative that Congress increase funding for National DPP to allow CDC
    to increase the number of sites that offer this effective program,
    specifically in the hardest-hit communities, continue to manage
    National DPP programs, ensure sites follow the evidence-based
    curriculum to achieve the same high level of results, and support
    programs as they become Medicare suppliers.
                                   conclusion
        Congress must continue to make progress and invest in diabetes
    research, education, and prevention: the 32 million Americans with
    diabetes cannot wait. I urge the Subcommittee to make decisions for
    fiscal year 2021 appropriations that reflect the necessity of reversing
    the human and economic burden of this staggering disease. I look
    forward to working with you and the ADA to stop diabetes.

        [This statement was submitted by Robert H. Eckel, MD, President,
    Medicine & Science, American Diabetes Association.]
                                     ______

      Prepared Statement of the American Educational Research Association
        Chairman Blunt, Ranking Member Murray, and Members of the
    Subcommittee; thank you for the opportunity to submit written testimony
    on behalf of the American Educational Research Association. As Congress
    continues to address the current public health and economic needs
    related to COVID-19, there are ongoing education research programs and
    statistical infrastructure needs that would be appropriately addressed
    through the regular appropriations process. AERA recommends that the
    Institute of Education Sciences (IES) within the Department of
    Education receive $670 million in fiscal year 2021. This recommendation
    is also consistent with the request from the Friends of IES coalition,
    for which we are a leading member. In addition, AERA recommends $44.7
    billion for the National Institutes of Health (NIH) in fiscal year
    2021, in support of important research in the Eunice Kennedy Shriver
    National Institute of Child Health and Human Development (NICHD) and
    the Office of Behavioral and Social Science Research (OBSSR).
        AERA is the major national scientific association of 25,000
    faculty, researchers, graduate students, and other distinguished
    professionals dedicated to advancing knowledge about education,
    encouraging scholarly inquiry related to education, and promoting the
    use of research to improve education and serve the public good. Our
    members, as well as state and Federal policymakers and practitioners,
    rely on IES to provide and support reliable education statistics, data,
    research, and evaluations.
        IES is the independent and nonpartisan statistics, research, and
    evaluation arm of the U.S. Department of Education charged with
    supporting and disseminating rigorous scientific evidence on which to
    ground education policy and practice. While located within the
    Department of Education, the mission of IES as a science agency is more
    closely aligned with other Federal agencies such as the National
    Science Foundation and the National Institutes of Health.
        This is a critical time to invest in education research, data, and
    statistics to produce essential knowledge about teaching and learning
    across all levels of education due to the unprecedent impact of the
    COVID-19 pandemic on educational institutions and the students,
    parents, teachers, and school leaders they serve. No institution is
    more vital than education to developing essential capacities and
    skills, to the economic wherewithal of our country, and to building a
    sense of community and citizenship. Yet, without monitoring the
    conditions of education and generating the knowledge we need and in
    real time, we will diminish our effectiveness in adapting to changing
    conditions that we inevitably will face. IES is already working
    proactively to provide data and evidence-based resources, including,
    for example, the addition of questions on longitudinal surveys
    undertaken by National Center for Education Statistics (NCES) to gauge
    the impact of COVID-19, conducting a meta-analysis study to highlight
    effective distance learning practices, and webinars and guidance from
    the Regional Educational Laboratories (RELs). But additional resources
    seem both wise and prudent.
        Outside of the response to the current crisis, we see numerous
    examples of bipartisan support for scientific research and evidence-
    based decisionmaking.
      --The Department of Education is implementing the provisions of the
            Foundations of Evidence-Based Policymaking Act, which directs
            Federal agencies to leverage data and evaluations to inform
            policy decisions. NCES as the statistical agency within the
            Department has special responsibilities with respect to data
            integrity, linkages, and analysis that simply cannot be assumed
            elsewhere with the same degree of confidentiality and trust, as
            mandated by this bi-partisan act.
      --School districts are implementing school improvement plans for
            their lowest performing schools under the framework provided
            under the Every Student Succeeds Act (ESSA), and research and
            evidence-based resources from IES are important tools for
            supporting student needs and fostering school improvement.
      --IES is increasing investment in research on career and technical
            education, which also includes involvement in research and
            evaluation activities specified in the Strengthening Career and
            Technical Education for the 21st Century Act.
        In short, the data and research infrastructure to build evidence
    for improving educational outcomes require additional funding
    necessitating action by your committee.
        Since IES was created in 2002, it has made visible scientifically-
    based contributions to the progress of education. Take, for example,
    IES-supported research at the Community College Research Center (CCRC)
    that led to significant changes in the remedial education program in
    the North Carolina Community College System. In a partnership between
    the system and CCRC, there was a shift from remedial education toward
    an accelerated structure of developmental education that increased
    student retention and degree completion. At the same time, the money
    saved from restructuring remedial education was reinvested into STEM
    and high-demand technical education. Despite the potential of research
    to inform key policy decisions, we have much left to do to provide
    high-quality education to all of our students.
        As states are moving forward implementing their Every Student
    Succeeds Act (ESSA) state plans, they are increasingly depending on
    their Statewide Longitudinal Data Systems (SLDS). Initially developed
    to help states measure accountability, these administrative data have
    transformed from a hammer to a flashlight, increasing understanding
    about student performance and teacher effectiveness without needing
    major and sustained investments in research. To date, IES has
    unfortunately been unable to meet the state demand for SLDS grants. In
    2015, only 16 of 43 states that submitted applications received grants.
    Those states that have benefitted from SLDS grants have clear success
    to show from the Federal investment, but others are without this
    information source to use. State leaders in Georgia and Mississippi
    have testified in front of Congress about their use of SLDS to improve
    student outcomes in their states.
        I also want to bring to your attention the numerous ways that
    Congress has signaled support for the use of education data in
    decisionmaking. The most recent bipartisan, bicameral draft of the IES
    reauthorization includes the continuation of SLDS, and we appreciate
    Congress continuing to invest in this program despite proposals to
    eliminate funding in recent budget requests. Eliminating this program
    would act in direct contrast to the broad bipartisan support to
    increase the use of data to inform policy decisions. Furthermore, cuts
    to SLDS hurt states working to build data capacity at the same time
    that ESSA is requiring states to make evidence-based decisions. Rather
    than eliminating the SLDS program, AERA encourages this committee to
    expand upon this very successful program. In addition, AERA opposes the
    proposal to eliminate the Regional Educational Laboratories in the
    fiscal year 2021 budget.
        AERA also is concerned with the reduced staff capacity at IES, and
    I would like to draw particular attention to the decades-long staff
    attrition at NCES. As the second-oldest principal Federal statistical
    agency in the U.S., NCES provides objective, nonbiased data on a wide
    range of education indicators, including information on teacher
    salaries, the amount of loans taken out by undergraduate students, and
    the participation of students in English language learner programs.
    NCES staff are also responsible for the development and administration
    of the National Assessment of Educational Progress, detailing
    longitudinal trends in student achievement. In recognizing the need for
    NCES to produce accurate and reliable data and report in it
    objectively, we encourage the subcommittee to ensure that NCES and IES
    have the appropriate level of staff in order to effectively carry out
    their missions in the Program Management line. Essential work is being
    stymied and delayed in ways that are not cost effective from a public
    policy perspective.
        We also have concerns about the inclusion of proposals to
    reauthorize the Education Sciences Reform Act (ESRA) in the fiscal year
    2021 IES Congressional Justification to support the administration's
    request for IES. Of particular concern is the proposal to create a new
    assessment center within IES. In light of the May 12 blog post from IES
    Director Mark Schneider detailing his argument for this center, we wish
    to emphasize a fundamental problem in separating statistics, data, and
    assessment. Every statistical agency worthy of that role needs to
    examine outcomes with rigorous, reliable measures and statistics. Thus,
    the very ambition that Director Schneider has for high-quality
    assessments could be undermined by less, rather than more,
    connectivity.
        At a time of fiscal constraint when more expert staff are sorely
    needed rather than an expanded administrative apparatus, the creation
    of a separate assessment center seems ill-timed. It also seems hasty to
    skip thoughtful consideration of a significant change to the structure
    of IES that is in the jurisdiction of authorizing committees. We
    strongly urge against the inclusion of appropriations language that
    would establish an assessment center in absence of ESRA
    reauthorization.
        In addition to IES, AERA recommends $44.7 billion for the National
    Institutes of Health (NIH) in fiscal year 2021 with proportional
    increases for the Eunice Kennedy Shriver National Institute of Child
    Health and Human Development (NICHD) and the Office of Behavioral and
    Social Science Research (OBSSR). NICHD supports research at the
    intersection of health and education, including the genetic and
    behavioral risks for child obesity, the use of opioids by mothers and
    potential impact on infant and child brain development, and
    interventions for students with learning disabilities who struggle with
    reading. Investment in NICHD will allow the institute to continue
    research both to increase understanding of the impact of opioid use
    across the educational lifespan and to reduce risk for addiction, and
    to bolster the professional development of early career researchers.
    OBSSR plays an important role in coordinating and co-funding behavioral
    and social science research across NIH that contribute to the
    understanding of influences on health and interventions to improve
    health outcomes.
        Thank you for the opportunity to submit written testimony in
    support of $670 million for IES and $44.7 billion for NIH in fiscal
    year 2021. AERA welcomes working with you and your subcommittee on
    strengthening investments in essential research, data, and statistics
    related to education and learning.

        [This statement was submitted by Felice J. Levine, PhD, Executive
    Director, American Educational Research Association.]
                                     ______

      Prepared Statement of the American Foundation for Suicide Prevention
        My name is John H. Madigan, Jr. and I am the Senior Vice President
    and Chief Public Policy Officer for the American Foundation for Suicide
    Prevention (AFSP). I am pleased to submit this written testimony today
    on behalf of our over 28,000 Field Advocates nationwide, and the
    thousands of individuals who participate in our Out of the Darkness
    Walks each year. AFSP has Chapters in all 50 states and sponsors a
    variety of events and programs across the country each year. In
    addition to raising to raising funds for research, education, and
    advocacy, our Chapters also disseminate resources and programs in their
    communities. This written testimony includes information that outlines
    the suicide crisis in the United States and information about each of
    AFSP's recommendations to the Subcommittee for fiscal year 2021.
        Suicide is a major public health crisis in the United States.
    Suicide is the second leading cause of death for ages 10-34, the fourth
    leading cause of death for ages 35-54, and the tenth leading cause of
    death overall in the United States. I lost my sister Nancy to suicide,
    23 years ago. Every year over 10 million people seriously consider
    suicide, over 1 million attempt suicide, and in 2018 we lost 48,344
    Americans to suicide. Each of these individuals lost to these
    preventable deaths are survived by tens of thousands of family,
    friends, and community members. Despite such a high rate of incidence
    and despite nearly 1-in-5 Americans living with a mental health
    condition, more than half of those individuals won't seek treatment due
    to poor public access to suicide prevention and treatment resources,
    sparse and inadequate mental health services, and deeply entrenched
    stigma. The most recent data from the Centers for Disease Control and
    Prevention (CDC) confirmed that suicide rates are rising in the United
    States. Suicide deaths across the country increased over 30 percent
    since the turn of the century and continue to do so every year.
        AFSP believes Congress must prioritize suicide prevention research,
    programs, and education at funding levels commensurate with other
    leading causes of death in the United States. We thank the
    Subcommittee, Chairwoman Blunt and Ranking Member Murray for this
    opportunity. Please find below AFSP's recommendations on funding and
    report language for the Subcommittee to consider for fiscal year 2021.
        Suicide Prevention Programs at the Substance Abuse and Mental
    Health Administration (SAMHSA) need a greater investment towards crisis
    and support services for suicide prevention activities throughout the
    country. The National Suicide Prevention Lifeline (Lifeline) (1-800-
    273-8255), one of SAMHSA's most effective and far reaching suicide
    prevention initiatives, which provides free 24/7 confidential support
    and resources for individuals experiencing distress, as well as
    prevention, education, and best practices for professionals. The
    Lifeline was funded at $19 million in fiscal year 2020 and the
    President's fiscal year 2021 budget proposes keeping the Lifeline at
    that same funding level. AFSP proposes an increase of $31 million, for
    a total of $50 million for the National Suicide Prevention Lifeline
    program to ensure more dedicated funding can be directed to the states
    with the lowest answer rates and with the highest need, and for
    national initiatives to better improve Lifeline quality and services.
        Given the current COVID-19 pandemic in the United States, these
    funds are urgently needed. During moments of acute public stress, the
    Lifeline has seen surges in distressed individuals in need of crisis
    services. In the current situation, calls to the National Suicide
    Prevention Lifeline have increased depending on many factors, and the
    majority of those reaching out are doing so related to anxiety, feeling
    isolated, or related to loss. Mental health organizations are already
    responding to unique challenges \1\ that the nearly 1-in-5 individuals
    living with mental health conditions will face during this national
    emergency. Following high profile suicides, the Lifeline has seen
    nearly an eightfold increase in crisis calls \2\ and call volumes can
    double after natural disasters.\3\ It is crucial that the Lifeline be
    adequately resourced to respond to public demand for crisis services.
    ---------------------------------------------------------------------------
        \1\ https://www.nami.org/getattachment/Press-Media/Press-Releases/
    2020/COVID-19-and-Mental-Illness-NAMI-Releases-Importan/COVID-19-
    Updated-Guide-1.pdf?lang=en-US.
        \2\ https://www.usatoday.com/story/news/nation/2014/08/14/suicide-
    hotline-calls-surge/14053415/.
        \3\ https://www.sprc.org/news/puerto-rico-%E2%80%98i-sit-cry-all-
    day%E2%80%99-suicide-hotline-calls-double-puerto-rico-six-months-after.
    ---------------------------------------------------------------------------
      --fiscal year 2020 actual: $19 million
      --fiscal year 2021: $50 million--proposed
        Suicide prevention research conducted at the National Institute of
    Mental Health (NIMH) will allow for better understanding, treatment and
    prevention of suicidality. NIMH has awarded grants totaling roughly $65
    million over the last year on direct suicide prevention research, and
    while this is a step in the right direction, we believe that more can
    be done given the increasing rate of suicide across our country. AFSP
    is the largest funder for suicide prevention research outside of the
    Federal Government and much of what is known about suicide comes from
    studies that AFSP has helped sponsor. Our studies open up new areas of
    inquiry, and our council of scientific advisors helps set the national
    research agenda.
        There is no single cause to suicide. It most often occurs when
    stressors exceed current coping abilities of someone suffering from a
    mental health condition. Suicide prevention research is a vital tool in
    identifying prevention, intervention, and postvention strategies that
    save lives and inform best practices and future approaches and areas of
    inquiry. Through encouraging increased synergy between the National
    Institute for Mental Health (NIMH), the National Institute on Drug
    Abuse (NIDA), and National Institute on Alcohol Abuse and Alcoholism
    (NIAAA) a multifaceted approach to suicide prevention research beyond
    the current work that the NIH is conducting can be applied. It is
    important that we can evaluate suicide as the complex condition that it
    is and find treatments and interventions for comorbid conditions that
    will save lives. Therefore, the American Foundation for Suicide
    Prevention encourages the House and Senate Appropriations Committee to
    adopt report language that will increase suicide prevention research at
    the NIMH.
      --Proposed Report Language: Suicide Prevention.--The Committee
            continues to be alarmed by the growing rates of suicide across
            the country, with the CDC reporting a 30 percent increase since
            1999. Suicide is currently the 10th leading cause of death for
            all ages and the 2nd leading cause of death for young people
            aged 10-34. The Committee commends NIMH for consistently
            increasing the resources dedicated to suicide screening and
            prevention research over the last three fiscal years and
            encourages the Institute to provide an additional increase for
            this purpose in fiscal year 2021, with special emphasis on
            producing models that are interpretable, scalable, and
            practical for clinical implementation, including mental and
            behavioral healthcare interventions. The Committee also
            encourages NIMH to consider the recommendations included in the
            Action Alliance for Suicide Prevention's A Prioritized Research
            Agenda for Suicide Prevention when allocating resources for
            this purpose. In addition, the Committee believes increased
            collaboration between NIMH and other NIH Institutes holds
            immense value. The Committee strongly encourages NIMH to
            partner with NIDA and NIAAA to examine the multifaceted
            relationship between suicide and substance use disorder (SUD),
            including opioid abuse. Enhanced research into these
            relationships will provide critical knowledge surrounding
            suicide warning signs. The Committee directs NIMH to provide an
            update on these efforts in the fiscal year 2022 justification
            materials.
        The Centers for Disease Control and Prevention (CDC) is the
    nation's leading health protection agency, and so it is a natural fit
    that the CDC expand their suicide prevention efforts.
        Through investing further in the CDC's new Suicide Prevention line
    which began fiscal year 2020 at the National Center for Injury and
    Prevention, there is a more holistic approach to suicide prevention
    programming beyond the work that SAMHSA and the NIH are implementing,
    evaluating, and researching. CDC data show that while depression and
    other mental health conditions are a significant risk factor for
    suicide, less than half of the individuals who die by suicide have a
    known mental health condition. Further, the latest data show that there
    is no single determining cause. Instead, suicide occurs in response to
    multiple biological, psychological, interpersonal, environmental, and
    social influences that interact with one another, often over time. This
    evidence demonstrates a need for a comprehensive public health approach
    to address suicide from all vantage points.
        Currently, there is no complete set of suicide attempt data in the
    United States, and through pilot programs to enhance the completeness
    of data, researchers may be able to identify further connections
    between suicide attempt behavior, and its connection to suicide, thus
    allowing for improved prevention strategies. In order to prevent
    suicide, programs implemented within communities must be scalable and
    allow for sustainable efforts. Therefore, as the suicide rate continues
    to grow each year, there is a need to make strategic investments that
    will help save lives and reduce the suicide rate, such as the work that
    the CDC is implementing through the Suicide Prevention line.
      --fiscal year 2020: $10 million
      --fiscal year 2021: $15 million--proposed
      --Proposed Report Language: Suicide.--The Committee recognizes that
            suicide is devastating communities across the U.S., as
            evidenced by more than 48,344 deaths in 2018, and is the tenth
            leading cause of death in America. While depression and other
            mental health conditions are a significant risk factor for
            suicide, less than half of the people who die by suicide have a
            known mental health condition. The Committee includes
            $15,000,000, an increase of $5,000,000 to build on the initial
            appropriation in fiscal year 2020, for CDC to expand research
            on the leading mechanisms of suicide deaths and identify
            prevention strategies to reduce the deaths by suicide through
            pilot projects to enhance the completeness of data to capture
            mechanisms of death; expand syndromic surveillance; and support
            research and evaluation projects to understand the pathways and
            mechanisms that contribute to suicide attempts, and identify
            prevention strategies that can be scaled at the community
            level.
        The Core State Violence and Injury Prevention Program (Core SVIPP)
    in the National Center for Injury Prevention and Control (NCIPC) at the
    CDC. Injuries and violence are the leading causes of death during the
    first four decades of life, regardless of gender, race or socioeconomic
    status. The inclusion of this dedicated funding through the National
    Center for Injury Prevention and Control, housed under the Injury
    Prevention Activities line would contribute in a meaningful way to
    suicide prevention by empowering states to implement, evaluate, and
    disseminate effective violence and injury prevention programs and
    policies of their choice in addition to the core four areas identified
    by the CDC: child abuse and neglect, traumatic brain injury, motor
    vehicle crash injury and death, and intimate partner/sexual violence.
    Currently, the Core SVIPP is only funded in 23 states, and serves the
    purpose of reducing violence related morbidity and mortality, and
    increases the sustainability of injury prevention programs.
      --fiscal year 2020: $6.7 million
      --fiscal year 2021: $20 million--proposed
        We thank you for your consideration and hope that Congress is
    willing to make greater investments in suicide prevention and crisis
    services. The American Foundation for Suicide Prevention is dedicated
    to saving lives and bringing hope to those affected by suicide. AFSP
    creates a culture that's smart about mental health through education
    and community programs, develops suicide prevention through research
    and advocacy, and provides support for those affected by suicide.
        Please let me know if you or any of your staff have any additional
    questions.

        [This statement was submitted by John H. Madigan, Jr. Senior Vice
    President and Chief Public Policy Officer, American Foundation for
    Suicide Prevention.]
                                     ______

       Prepared Statement of the American Gastroenterological Association
             national institute of allergy and infectious diseases
        Chairman Blunt, Ranking Member Murray, and members of the
    Subcommittee, I would like to start by thanking you for the opportunity
    to submit testimony on the U.S. Department of Health and Human Services
    (HHS) fiscal year 2021 appropriations bill. I am Dr. Colleen Kelly, and
    I am an associate professor of medicine at the Alpert Medical School of
    Brown University. I am submitting testimony on behalf of the American
    Gastroenterological Association (AGA) and its Fecal Microbiota
    Transplant National Registry, whose principal investigators include
    myself, Dr. Loren Laine from Yale School of Medicine, and Dr. Gary Wu
    from the University of Pennsylvania School of Medicine. The AGA was
    founded in 1897, and today, it has expanded its membership to include
    more than 16,000 professionals who are dedicated to the advancement of
    science, practice, and research in the field of gastroenterology. We
    respectfully request the subcommittee to provide robust funding for the
    National Institutes of Health (NIH). Additionally, we request report
    language to support the Fecal Microbiota Transplant (FMT) National
    Registry, a national data registry funded by the National Institute of
    Allergy and Infectious Diseases (NIAID) that assesses short and long-
    term safety and effectiveness of FMT as it relates to recurrent
    Clostridioides difficile infection (CDI) and other clinical
    indications.
    Antimicrobial Resistant Infections
        CDI is associated with the use of antibiotics and is the most
    frequently transmitted infection in healthcare settings. CDI affects
    more than 500,000 Americans each year, leading to hospitalizations,
    which in turn, provide increased opportunity for the infection to
    spread. Today, approximately 30,000 annual deaths can be attributed to
    the condition. In recent years, there has been a concerning rise in
    community acquired CDI and cases which are more severe or resistant to
    standard therapies.
        The human gastrointestinal system contains trillions of bacteria,
    viruses and other microorganisms that collectively are known as the gut
    microbiota. These microorganisms play an essential role in the body's
    immune and digestive systems. However, the health of this microbial
    community is adversely affected when antibiotics are used to treat an
    underlying bacterial infection. The resultant loss of beneficial
    organisms increases the risk for pathogens, such as C. difficile to
    overgrow and cause disease. Like other resistant infections, the annual
    incidence of CDI continues to rise with the widespread use of
    antibiotics.
        According to the Centers for Disease Control and Prevention (CDC),
    patients who receive antibiotics are 7-10 times more likely to contract
    CDI, with the risk increasing significantly for the elderly,
    immunocompromised, and those with an extended stay in a hospital or
    assisted living facility. Recent studies have confirmed elevated risk
    of infection for certain demographics and hospital-related exposure.
    For example, a 2011 study showed that 57 percent of CDI cases occurred
    in patients older than 65 and 56 percent of cases occurred in females.
    Remarkably, the same study also showed that 65 percent of cases were
    contracted in a healthcare setting.
        When CDI does not self-resolve after the cessation of antibiotic
    treatments, many seek medical attention due to the severity of their
    symptoms. At this point, additional antibiotics are used to treat the
    infection, but approximately 25 percent of patients will experience a
    recurrence. In cases where CDI persists after multiple rounds of
    antibiotics, FMT may be used to treat the patient.
    Fecal Microbiota Transplantation
        FMT involves the delivery of a stool sample, containing the entire
    community of microorganisms, from a healthy donor to a recipient in
    order to restore the health of the gut microbiome. This process is
    highly effective in treating recurrent CDI; nearly 90 percent of
    patients do not experience a recurrence of symptoms after FMT. However,
    this therapy presents a number of safety concerns, including risk of
    infection transmission, and more research is necessary to understand
    the short and long-term effects of FMT in the treatment of CDI.
        Currently, the Food and Drug Administration (FDA) has not approved
    the use of FMT, as it has designed the therapy as a drug and biological
    product that requires an investigational new drug (IND) application;
    yet, the agency has recognized the benefits of FMT treatment in
    patients with CDI who have not responded to other therapies. To that
    end, the FDA issued guidance in 2013 whereby it exercised enforcement
    discretion to accommodate the needs of patients with recurrent CDI that
    did not respond to standard therapies. While the enforcement discretion
    policy ensures patient access to FMT, it has consequently left a void
    in the surveillance of safety and effectiveness that must be addressed
    as the practice of FMT continues to expand. Physicians and scientists
    have learned the importance of vigilance in collecting information on
    the outcomes of medical interventions after a generation of patients
    was infected with HIV and hepatitis C from blood transfusions.
        Real-world surveillance of FMT is more important than ever due to
    the emergence of the novel coronavirus SARS-CoV-2 and the associated
    coronavirus disease 2019 (COVID-19). As reported by the Centers for
    Disease Control and Prevention, COVID-19 has led to over 78,000 deaths
    in the U.S. as of May 10, 2020. FMT procedures have largely stopped
    across the U.S. as many clinics perform FMT using endoscopic
    techniques, and these ``elective'' procedures have been discouraged
    during the COVID-19 pandemic. In addition, the novel coronavirus has
    been detected in the stool of patients hospitalized for COVID-19 and it
    remains unknown whether SARS-CoV-2 can be transmitted from person to
    person through feces. When COVID-19 subsides, it will be critical to
    monitor how clinics performing FMT are screening stool donors and
    testing donated stool for the presence of SARS-CoV-2. It will also be
    important to track the outcomes of patients receiving FMT, including
    the incidence of COVID-19.
    FMT National Registry
        In August of 2016, the FMT National Registry was developed and
    received 5 years of funding from the National Institute of Allergy and
    Infectious Diseases (NIAID) to study patients receiving FMT or other
    gut-related microbiota products. The AGA collaborated with the Crohn's
    and Colitis Foundation, Infectious Diseases Society of America and
    North American Society for Pediatric Gastroenterology, Hepatology and
    Nutrition to create the registry and our steering committee includes
    physician liaisons from each of these partners. The registry aims to
    collect data from 75 clinical sites across the country to monitor
    patients 30 days, 6 months, 1 year, and 2 years after they receive FMT.
    The registry will also collect patient-reported outcomes directly from
    participants annually, starting at 1 year and up to 10 years after
    their FMT.
        To date, more than 250 patients have been observed through the
    first benchmark of 30 days and have seen an initial success rate of 90
    percent. Of these patients, more than 150 have been observed through
    the second benchmark of 6 months and 96 percent of those with an
    initial success remained cured. From the perspective of safety, no new
    infections were reported in 95 percent of patients and no deaths were
    reported at the first benchmark of 30 days. At the second benchmark of
    6 months, 90 percent of patients remained without any life-threatening
    infections. Though four deaths were reported at the second benchmark,
    none were for reasons determined to be related to the FMT procedure.
        In June 2019, the FDA announced the death of a patient receiving
    FMT caused by a contaminated donor sample. Consequently, sites
    performing FMT under an IND permit have additional donor screening
    criteria and testing requirements to detect the presence of antibiotic
    resistant bacteria in donor samples. The FMT National Registry fills
    the information gap for sites performing FMT under the FDA's
    enforcement discretion policy, for whom these requirements are non-
    binding. In addition to patient safety and effectiveness outcomes, the
    registry collects procedural information such as donor screening
    criteria and method of FMT delivery. This data is especially important
    given the emergence of the novel coronavirus, and the unknowns
    regarding potential transmission of the virus through stool. Therefore,
    the registry will serve as a central hub to gather information on donor
    screening and stool testing procedures related to COVID-19.
        Beyond CDI, FMT is being studied for many other clinical
    applications with known associations to the gut microbiome. These
    include gastrointestinal disorders such as inflammatory bowel disease
    (i.e., Crohn's disease, ulcerative colitis), irritable bowel syndrome
    and hepatic encephalopathy; central nervous system diseases such as
    autism, Parkinson disease and multiple sclerosis; obesity and metabolic
    syndrome; and cancers, particularly colorectal cancer, as well as the
    effectiveness of cancer immunotherapies and the treatment of graft-
    versus-host disease in patients who have received stem cell
    transplantation. As such, the FMT National Registry has been built with
    the flexibility to collect data on these other indications.
        The NIH funding received thus far has been instrumental in the
    development of future treatments for millions of patients. The FMT
    National Registry has provided us with valuable insights regarding the
    safety and effectiveness of FMT in the treatment of CDI. The AGA
    recognizes the continued need to collect systemic data on the short and
    long-term outcomes of FMT. Therefore, the AGA urges the subcommittee to
    include the following report language that would allow NIH to continue
    its support of the FMT registry.
        FMT National Registry.--The Committee recognizes that the FDA has
    allowed for enforcement discretion to promote continued patient access
    to fecal microbiota transplantation (FMT) for recurrent C. difficile
    infections. To help inform clinicians and patients, Congress encourages
    NIH to continue to support the FMT National Registry and related
    research efforts to better understand the short- and long-term safety
    and effectiveness of FMT.
        In addition to the AGA, the requested report language is supported
    by the following organizations: American College of Gastroenterology,
    American Neurogastroenterology and Motility Society, American Society
    for Gastrointestinal Endoscopy, Association of Gastrointestinal
    Motility Disorders, Crohn's & Colitis Foundation, Digestive Disease
    National Coalition, Global Liver Institute, Infectious Diseases Society
    of America, Massachusetts Gastroenterology Association, The National
    Chronic Pancreatitis Support Network, No Stomach For Cancer, North
    American Society for Pediatric Gastroenterology, Hepatology and
    Nutrition, North Carolina Society of Gastroenterology, The Oley
    Foundation, Peggy Lillis Foundation, Society of Gastroenterology Nurses
    and Associates, and United Ostomy Associations of America.
        On behalf of AGA, its members, and the FMT National Registry, I
    would like to thank you for your consideration of this request. If you
    have any questions, please contact Kathleen Teixeira, Vice President of
    Government Affairs, at kteixeira@gastro.org.

        [This statement was submitted by Dr. Colleen Kelly, MD, FACG,
    Associate
    Professor of Medicine, Brown Alpert Medical School, American
    Gastroenterological Association.]
                                     ______

              Prepared Statement of the American Geophysical Union
        The American Geophysical Union (AGU), a non-profit, non-partisan
    scientific society, appreciates the opportunity to submit testimony
    regarding the fiscal year 2021 appropriation for the National Institute
    of Environmental Health Sciences (NIEHS). AGU, on behalf of its
    community of 110,000 Earth and space scientists, respectfully requests
    that the 116th Congress appropriate $860.3 million for the NIEHS. AGU's
    appropriations request takes into consideration previous budget cuts
    and accounts for both inflation and a necessary real four-percent year-
    over-year growth, to ensure that the U.S. remains at the forefront of
    research and innovation.\1\
    ---------------------------------------------------------------------------
        \1\ This amount of growth is recommended by the Innovation: An
    American Imperative statement, which was authored by nine large U.S.
    corporations and endorsed by over 500 leading industry, higher
    education, science, and engineering organizations from across the 50
    states. https://innovation-imperative.herokuapp.com/index.html.
    ---------------------------------------------------------------------------
        Under the umbrella of the National Institutes of Health (NIH), the
    NIEHS conducts essential, innovative research that advances our
    understanding of the effects of environmental changes or exposures on
    human health and disease in the U.S. and across the globe. Through
    NIEHS research, policymakers have access to vital, unbiased science
    that is necessary for making informed decisions when addressing public
    health issues. A few examples of the NIEHS's invaluable work are
    provided below.
    Improving Disaster Response, Reducing Health Impacts, & Preventing
            Future Harm
        The NIH Disaster Research Response program, launched by the NIEHS
    and the National Library of Medicine, helps to address the ongoing need
    for time-sensitive research in the aftermath of disasters, such as
    hurricanes, wildfires, oil spills, and public health crises. Such
    research helps scientists, government agencies, and communities better
    understand immediate environmental exposures and injury risks,
    potential short-term and long-term health impacts, the effectiveness of
    health response efforts and environmental cleanup efforts, as well as
    factors affecting post-disaster recovery and resiliency to future
    events. To support timely gathering of the environmental and toxicology
    data needed, the program has readily available research protocols, data
    collections tools, and training resources.\2\
    ---------------------------------------------------------------------------
        \2\ See, NIH Disaster Research Response Program (DR2), https://
    dr2.nlm.nih.gov/.
    ---------------------------------------------------------------------------
    Increasing Knowledge of Health Effects Related to PFAS Exposure
        The NIEHS continues to be at the forefront of research on
    perfluoroalkyl and polyfluoroalkyl substances (PFAS). A year ago, at
    least 610 locations in 43 states were known to be affected by PFAS
    contamination, which included drinking water systems serving an
    estimated 19 million people.\3\ Research into the possible health
    impacts of PFAS chemicals exposure has already unmasked many links to
    adverse health outcomes. For example, research has revealed that PFAS
    exposure may increase a woman's risk of pregnancy complications.\4\
    However, there is still much to understand regarding the effects of
    PFAS exposure, which is why the NIEHS continues to conduct research and
    award grants to external organizations across the nation.
    ---------------------------------------------------------------------------
        \3\ Based on data analysis by the Environmental Working Group and
    Northeastern University. Walker, B., (6 May 2019). Mapping the PFAS
    contamination crisis: New data show 610 sites in 43 states, EWG News
    and Analysis, https://www.ewg.org/news-and-analysis/2019/04/mapping-
    pfas-contamination-crisis-new-data-show-610-sites-43-states.
        \4\ Broadfoot, M., (February 2020). Replacement chemicals may put
    pregnancies at risk. Environmental Factor, NIEHS Newsletter, https://
    factor.niehs.nih.gov/2020/2/science-highlights/replacement/index.htm.
    ---------------------------------------------------------------------------
    Growing the Environmental Health Science Workforce
        To further expand the world's understanding of environmental
    impacts on human health and disease and support interdisciplinary
    scientific research, the NIEHS provides training and educational
    opportunities for students of all ages-from the high school and
    undergraduate levels to graduate students and faculty. For example, the
    NIEHS Medical Student Research Fellowship program provides medical
    students an opportunity to train in environmental health-related
    research for a year at the NIEHS.\5\ The NIEHS also awards NIH Summer
    Research Experience Program (R25) grants that give high school and
    college students and science teachers an opportunity to gain valuable
    research experience at a higher education institution during the
    summer.\6\
    ---------------------------------------------------------------------------
        \5\ See, NIEHS Medical Student Research Fellowships, https://
    www.niehs.nih.gov/careers/research/med-students/index.cfm.
        \6\ See, the NIH Summer Research Experience Programs (R25), https:/
    /www.niehs.nih.gov/research/supported/irt/summer_research/index.cfm.
    ---------------------------------------------------------------------------
                                   conclusion
        AGU recognizes that difficult decisions must be made within the
    constraints of the current budget environment and believes that the
    future of the U.S. is best served by a strong and sustained investment
    in the full scope of our research enterprise-including new, innovative
    research regarding the impact of environmental factors on human health
    generated by the NIEHS. Thank you for your thoughtful consideration of
    this request and for the opportunity to submit this testimony.

        [This statement was submitted by Michael Villafranca, Senior
    Specialist, Public Affairs.]
                                     ______

             Prepared Statement of the American Geriatrics Society
        The American Geriatrics Society (AGS) greatly appreciates the
    opportunity to submit this testimony. The AGS is a national non-profit
    organization of nearly 6,000 geriatrics healthcare professionals and
    basic and clinical researchers dedicated to improving the health,
    independence, and quality of life of all older Americans. As the
    Subcommittee works on its fiscal year 2021 Labor, Health and Human
    Services, and Related Agencies Appropriations Bill, we ask that you
    prioritize funding for the geriatrics education and training programs
    under the Title VII of the Public Health Service (PHS) Act, and for
    aging research within the National Institutes of Health (NIH) and
    National Institute on Aging (NIA).
        We are appreciative of your ongoing support of the Title VII and
    VIII Geriatrics Health Professions Programs at the Health Resources and
    Services Agency (HRSA), which includes the Geriatrics Workforce
    Enhancement Programs (GWEPs) and Geriatrics Academic Career Awards
    (GACAs). However, the AGS believes it is urgent that we increase the
    educational and training opportunities in geriatrics and gerontology
    and ensure that HRSA receives the funding expansion necessary for these
    critically important programs for the care and health of older adults.
        We ask that the Subcommittee consider the following funding levels
    for these programs in fiscal year 2021:
      --At least $51 million to support the Geriatrics Workforce
            Enhancement Program and the Geriatrics Academic Career Award
            Program (PHS Act Title VII, Sections 750 and 753(a))
      --An increase of $3 billion over the enacted fiscal year 2020 level
            in the fiscal year 2021 budget for total spending at NIH and a
            minimum increase of $354 million to invest in biomedical,
            behavioral, and social sciences aging research efforts across
            NIH and research on Alzheimer's disease and related dementias
            over the enacted fiscal year 2020 level
        Sustained and enhanced Federal investment in these initiatives is
    essential to delivering high-quality, better coordinated, efficient,
    and cost-effective care to our older Americans whose numbers are
    projected to increase dramatically in the coming years. According to
    the U.S. Census Bureau, the number of people age 65 and older is
    projected to more than double from 49 million today to more than 94
    million by 2060,\1\ while those 85 and older is projected to more than
    triple from 6 million today to 19 million by 2060.\2\ As our aging
    population increases, so too will the prevalence of diseases
    disproportionately affecting older people-most notably Alzheimer's
    disease and related dementias (including vascular, Lewy body, and
    frontotemporal dementia)--and the economic burden associated with these
    diseases.
    ---------------------------------------------------------------------------
        \1\ U.S. Census Bureau. (2018). An Aging Nation: Projected Number
    of Children and Older Adults. Retrieved from https://www.census.gov/
    library/visualizations/2018/comm/historic-first.html.
        \2\ Ibid.
    ---------------------------------------------------------------------------
        To ensure that our nation is prepared to meet the unique healthcare
    needs of this rapidly growing population, we request that Congress
    provide additional investments necessary to expand and enhance the
    geriatrics workforce, which is an integral component of the primary
    care workforce, and to foster groundbreaking medical research.
             programs to train geriatrics healthcare professionals
    Geriatrics Workforce Enhancement Program and Geriatrics Academic Career
            Awards (at least $51 million)
        Our healthcare workforce receives little, if any, training in
    geriatric principles,\3\ which leaves us ill-prepared to care for older
    Americans as health needs evolve, especially during the current crisis.
    With our nation continuing to face a severe shortage of geriatrics
    healthcare providers and academics with the expertise to train these
    providers, the AGS believes it is urgent that we increase the number of
    educational and training opportunities in geriatrics and gerontology.
    The requested increase in funding over fiscal year 2020 levels would
    help ensure that HRSA receives the funding necessary to expand these
    critically important programs commensurate with the increasing need.
    ---------------------------------------------------------------------------
        \3\ Only 3 percent of medical students take even one class in
    geriatric medicine and fewer than 1 percent of RNs, pharmacists,
    physician assistances and physical therapists are certified in
    geriatrics or gerontology. Yet estimates are that by 2030, 3.5 million
    additional healthcare professionals and direct-care workers will be
    needed to care for older adults. 2018 Issue Brief, Eldercare Workforce
    Alliance, available at: https://eldercareworkforce.org/wp-content/
    uploads/2018/03/GWEP_OnePager_v2.pdf.
    ---------------------------------------------------------------------------
        The GWEP is currently the only Federal program designed to increase
    the number of providers, in a variety of disciplines, with the skills
    and training to care for older adults. The GWEPs educate and engage the
    broader frontline workforce, including family caregivers, and focus on
    opportunities to improve the quality of care delivered to older adults,
    particularly in underserved and rural areas. The GWEP was launched in
    2015 by HRSA with 44 three-year grants provided to awardees in 29
    states. In 2019, HRSA funded a second cohort of 48 GWEPs across 35
    states and two territories (Guam and Puerto Rico) and provided
    extension grants to 15 former GWEP awardees. Due to GWEPs' partnerships
    with primary care and community-based organizations, GWEPs are uniquely
    positioned to rapidly address the needs of older adults and their
    caregivers.
        The GACA program is an essential complement to the GWEP. GACAs
    ensure we can equip early-career clinician educators to become leaders
    in geriatrics education and research. It is the only Federal program
    designed to increase the number of faculty with geriatrics expertise in
    a variety of disciplines. The program was eliminated in 2015 through a
    consolidation of several training programs. However, the program was
    reestablished in November 2018 when HRSA released a funding opportunity
    indicating their intention to fund 26 GACAs for 4 years starting
    September 1, 2019. Since 1998, original GACA recipients have trained as
    many as 65,000 colleagues in geriatrics expertise and have contributed
    to geriatrics education, research, and leadership across the U.S.
        Our nation currently faces an unprecedented public health
    emergency, the novel coronavirus, significantly impacting our older
    loved ones. Access to a well-trained workforce and appropriate care for
    medically complex older adults is imperative to maintaining the health
    and quality of life for this growing segment of the nation's
    population. As our nation works toward recovery and resilience from the
    pandemic, our population will continue to age, and the need for
    training in geriatrics and gerontology will continue to increase.
        To address this issue, we ask the Subcommittee to provide a fiscal
    year 2021 appropriation of at least $51 million for the GWEPs and
    GACAs. This small increase in funding over fiscal year 2020 levels
    would help ensure that HRSA receives the funding necessary to carry
    these critically important programs forward. Additional funding will
    also allow HRSA to expand the number of GWEPs and GACAs and move
    towards closing the current geographic and demographic gaps in
    geriatrics workforce training.
                          research funding initiatives
    National Institutes of Health/National Institute on Aging (additional
            $500 million for aging research efforts and a minimum increase
            of $354 million for Alzheimer's disease and related dementias
            research)
        The institutes that make up the NIH and specifically the NIA lead
    the national scientific effort to understand the nature of aging and to
    extend the healthy, active years of life. As a member of the Friends of
    the NIA (FoNIA), a broad-based coalition of aging, disease, research,
    and patient groups committed to the advancement of medical research
    that affects millions of older Americans-the AGS urges you to include
    an increase of at least $500 million in the fiscal year 2021 budget for
    biomedical, behavioral, and social sciences aging research efforts
    across NIH and a minimum increase of $354 million for research on
    Alzheimer's disease and related dementias over the enacted fiscal year
    2020 level.
        The Federal Government spends a significant and increasing amount
    of funds on healthcare costs associated with age-related diseases. By
    2060, for example, the number of people affected by dementia is
    estimated to reach 14.9 million cases-nearly triple the number in
    2020.\4\ Further, chronic diseases related to aging, such as diabetes,
    heart disease, and cancer continue to afflict 80 percent of people age
    65 and older \5\ and account for more than 75 percent of Medicare and
    other Federal health expenditures.\6\ Continued and increased Federal
    investments in scientific research will ensure that the NIH and NIA
    have the resources to conduct groundbreaking research related to the
    aging process, foster the development of research and clinical
    scientists in aging, provide research resources, and communicate
    information about aging and advances in research on aging.
    ---------------------------------------------------------------------------
        \4\ Matthews, K. A., Xu, W., Gaglioti, A. H., Holt, J. B., Croft,
    J. B., Mack, D., & McGuire, L. C. (2019). Racial and ethnic estimates
    of Alzheimer's disease and related dementias in the United States
    (2015-2060) in adults aged* 65 years. Alzheimer's & Dementia, 15(1),
    17-24.
        \5\ National Prevention Council. (2016). Health Aging in Action:
    Advancing the National Prevention Strategy. Retrieved from https://
    www.cdc.gov/aging/pdf/healthy-aging-in-action508.pdf.
        \6\ Erdem, E., Prada, S.I., Haffer, S.C. (2013). Medicare Payments:
    How Much Do Chronic Conditions Matter? Medicare & Medicaid Research
    Review, 3(2). Retrieved from http://dx.doi.org/10.5600/mmrr.003.02.b02.
    ---------------------------------------------------------------------------
        Additionally, the AGS supports a $3 billion increase over the
    enacted fiscal year 2020 level in the fiscal year 2021 budget for total
    spending at NIH. We believe that a meaningful increase in NIH-wide
    funding, in combination with aging and prevalence of diseases
    increases, will be essential to sustain the research needed to make
    progress in addressing chronic disease, Alzheimer's disease, and
    related dementias that disproportionately affect older people.
        Strong support such as yours will help ensure that every older
    American is able to receive high-quality care. We greatly appreciate
    the Subcommittee for the opportunity to submit this testimony.
                                     ______

              Prepared Statement of the American Heart Association
        On behalf of our 40 million volunteers and supporters, the American
    Heart Association (AHA) thanks Congress for its ongoing commitment to
    the National Institutes of Health (NIH) and Centers for Disease Control
    and Prevention (CDC). We also commend Congress for its bipartisan
    response to the COVID-19 pandemic, which places heart disease and
    stroke patients at heightened risk. According to emerging data, 40
    percent of hospitalized coronavirus patients have some form of
    cardiovascular disease, and experience 2 to 3 times higher death rates.
    Doctors are reporting that hospitalized coronavirus patients are
    experiencing cardiovascular complications such as heart-rhythm
    disorders, blood clots, inflammation of the heart, and myocarditis,
    which can lead to heart failure. Research from several countries has
    also found cardiac damage in as many as 1 in 5 patients, even among
    those with no signs of respiratory distress or previous heart disease.
    Furthermore, new studies indicate that children with multisystem
    inflammatory syndrome caused by COVID-19 may experience heart failure.
        Although advances in research and prevention have produced large
    reductions in mortality over many decades, cardiovascular disease (CVD)
    stubbornly remains the leading cause of death and disability in the
    United States, affecting 121.5 million Americans and accounting for 1
    in every 6 healthcare dollars spent. Recent data shows that nearly half
    (48 percent) of U.S. adults have some form of cardiovascular disease.
    Even more troubling, the overall decline in population mortality rates
    for CVD is slowing with actual increases for some groups, especially
    for those living in rural counties in the United States. Data from the
    2017 Centers for Disease Control and Prevention (CDC) National Health
    Interview Survey showed a 40 percent higher prevalence of heart disease
    among rural residents compared with their counterparts in small
    metropolitan and urban areas, a gap that has grown over the past
    decade. Among leading causes, rural areas have significantly higher
    rates of uncontrolled cardiovascular risk factors including tobacco
    use, physical inactivity, diabetes, high cholesterol, obesity, and
    substance abuse.
        Placing the highest burden on our nation's health and economy,
    heart disease, stroke and other forms of cardiovascular disease remain
    our nation's top killer and most expensive disease, costing nearly $1
    billion a day. This cost is projected to reach over $1 trillion a year
    by 2035. The American Heart Association calls on Congress to respond to
    the challenges presented by cardiovascular disease by supporting the
    NIH and CDC heart disease and stroke programs.
    National Institutes of Health (NIH)--Propelling Scientific and Economic
            Growth
        Robust NIH-funded research helps prevent and cure disease,
    transforms patient care, propels economic growth, drives innovation,
    and preserves U.S. leadership in pharmaceuticals and biotechnology. NIH
    continues to be the world's leader of basic research-the basis for all
    medical progress and a basic Federal Government role the private sector
    cannot emulate. Unfortunately, our country's competitive edge in
    research has been eroded recently by inadequate resources.
    Specifically, the U.S. has fallen out of the top 10 in innovation and
    China is on the path to surpass our Nation in spending on science
    research and development.
        In addition to enriching health, NIH generates a strong return on
    investment. In 2019, NIH supported more than 476,000 U.S. jobs and more
    than $81 billion in economic activity in every state and in nearly all
    congressional districts. Between 2010-2016 NIH research investments led
    to 210 new medicines winning FDA approval and for every dollar increase
    in public basic research an additional $8.38 of industry research and
    development is stimulated. Yet, due to insufficient funding, NIH lost
    over 20 percent of its purchasing power since 2003, as other countries
    have boosted scientific investments, some by double digits. Moreover,
    NHLBI extramural heart research dropped 22 percent in constant dollars
    since 2003. This threatens to stall scientific progress and could deter
    young scientists from pursuing careers in research unless Congress acts
    now.
        American Heart Association Advocates: We urge Congress to
    appropriate $44.7 billion to the NIH to build on recent investments and
    to improve health, spur economic growth, and preserve U.S. leadership
    in biomedical research. We ask Congress to prioritize funding for heart
    disease and stroke research to reflect the devastating burden they
    inflict on Americans and to restore progress that has been stalled in
    the battle against cardiovascular disease.
    Cardiovascular Disease Research: National Heart, Lung, and Blood
            Institute (NHLBI)
        People with underlying health conditions, such as cardiovascular
    disease, hypertension, and diabetes have a higher risk for severe
    COVID-19 complications and death. In severe cases, the SARS-CoV2
    triggers an inflammatory response that can damage many organs in the
    body including the heart, lung, and vascular systems. With initial
    supplemental funding provided in the CARES Act, the National Heart,
    Lung, and Blood Institute (NHLBI) is supporting research that will
    improve our understanding of how COVID-19 attacks the body. This newly
    acquired knowledge will in turn catalyze safe and effective treatments
    against the virus. Recognizing the disparate impact the coronavirus is
    having on segments of the American population, NHLBI is also leveraging
    existing clinical trials and community-based studies to uncover the
    different manifestations of the virus and its biomarkers.
        To expand its investment in vital basic, clinical, and
    translational research that addresses COVID-19 while also sustaining
    current activities and investment in promising and critically needed
    scientific research, AHA supports $3.924 billion for NHLBI. This
    funding will allow the institute to tandemly address the COVID-19
    pandemic while aggressively advancing the fight against heart disease,
    stroke, heart failure, congenital heart disease, and vascular dementia
    identified in NHLBI's Strategic Vision. Funding will also target
    reducing heart disease deaths for women including mothers. The U.S.
    maternal mortality rate is the worst among industrialized nations and
    heart disease is the number one reason for maternal mortality.
    Furthermore, many women who experience conditions like preeclampsia or
    gestational diabetes are at greater risk for heart disease later in
    life.
    Stroke Research: National Institute of Neurological Disorders and
            Stroke (NINDS)
        Stroke continues to inflict a massive burden on our nation's long-
    term health and economic stability. An estimated 795,000 Americans will
    suffer a stroke this year, and more than 146,000 will die. Many of the
    7 million survivors face grave physical, mental, and emotional
    distress. Stroke costs an estimated $45.5 billion in medical expenses
    and lost productivity annually. Projections also show that stroke's
    medical direct costs will more than double by 2035. Since the onset of
    the coronavirus pandemic, hospitals are reporting unusually high
    numbers of stroke victims infected with COVID-19. These strokes are
    believed to be caused by blood clots that form as the virus damages
    blood vessel linings throughout the body. Experts say that this can
    happen in any patients regardless of age, and even in those with few or
    no symptoms.
        AHA recommends $2.621 billion for NINDS. This funding level will
    enhance existing initiatives and proactively advance the top priorities
    in stroke prevention, treatment, and recovery research. This includes
    supporting basic research and large population-based studies exploring
    genetic, lifestyle, and other risk factors related to stroke in diverse
    populations, including in rural communities that are found in the
    stroke belt. Additional support will also fund ongoing stroke research
    conducted under the BRAIN Initiative; research exploring how the
    accumulation of white matter lesions in the brain can lead to stroke
    and dementia; and ongoing clinical trials that are developing new
    treatments and improved approaches to stroke recovery and
    rehabilitation.
    Preventing Cardiovascular Disease: Centers for Disease Control and
            Prevention (CDC)
        Cardiovascular disease is largely preventable -yet, risk factors
    such as the increasing prevalence of diabetes mellitus, childhood
    obesity, and hypertension rates are rising. Additionally, the use of e-
    cigarettes has reached an epidemic level and threatens to erase decades
    of progress to reduce tobacco use, especially among youth. We join the
    CDC Coalition in asking for $8.3 billion for the Centers for Disease
    Control and Prevention. In addition, we request $1.73 billion for the
    National Center for Chronic Disease and Health Promotion to support
    chronic disease prevention and public health initiatives. Chronic
    diseases are responsible for 7 in 10 deaths each year and account for
    most of our nation's healthcare costs.
        The association requests $192 million for the Division for Heart
    Disease and Stroke Prevention (DHDSP) as part of the national effort to
    reduce COVID-19 related health complications and mortality. This $50
    million in additional funding will expand and enhance the division's
    ongoing activities to improve the nation's overall cardiovascular
    health through risk factor screening and promoting behavioral health
    interventions. These funds and resources should be focused on
    communities with the highest burden of heart disease and stroke;
    especially among populations where cardiovascular disease mortality
    rates have recently increased.
        As part of an overall strategy to prevent the development of
    cardiovascular disease, AHA requests $125 million for the Division for
    Nutrition, Physical Activity, and Obesity (DNPAO) to invest in
    effective strategies that support healthy eating and active living.
    Currently, DNPAO funds a limited number of states and communities to
    support these evidence-based strategies. An increase in funding will
    allow the CDC to fund all 50 states and the District of Columbia.
        Cardiovascular disease is the leading cause of death for women. To
    help combat this largely preventable disease, AHA proposes $46.7
    million for WISEWOMAN to expand access to this state-based initiative
    to the entire nation. WISEWOMAN helps uninsured and under-insured low-
    income women ages 40 to 64 understand and reduce their risk for heart
    disease and stroke by providing risk factor screenings and connecting
    them with lifestyle programs, health counseling, and other community
    resources.
        We further recommend $5 million for Million Hearts to advance its
    goal of preventing 1 million heart attacks and strokes by 2022.
    Additional support will help to identify best practices to reduce heart
    disease and stroke, conduct surveillance and data analysis to improve
    interventions in high burden populations, and to administer recognition
    programs for hospitals and health systems that are committed to working
    systematically to improve the cardiovascular health of the communities
    they serve.
        AHA also supports a $310 million appropriation for the Office on
    Smoking and Health (OSH). Additional resources will allow OSH to
    address the new threat to public health posed by skyrocketing rates of
    youth e-cigarette use while continuing to prevent and reduce other
    forms of tobacco use.
    Bridge Funding to Protect Nonprofit Research Pipeline
        Supporting the biomedical research enterprise is more important
    than ever for learning from this pandemic, creating evidence-based
    clinical guidelines and robust systems of care, understanding the
    epidemiology of infectious and chronic disease, and assuring population
    health and well-being. The AHA is deeply concerned about the economic
    consequences that the COVID-19 pandemic will have on America's research
    ecosystem including the nonprofit and voluntary health community, which
    is a critical pillar of America's drug research and development
    pipeline as the fourth largest contributor for U.S. medical and health
    research and development expenditures, and funder of thousands of early
    and mid-career scientists and researchers each year. The decreases in
    revenue that the sector is experiencing as a direct result of the
    COVID-19 pandemic will significantly impact its ability to fund new
    basic or clinical research and halt completion of ongoing clinical
    trials, effectively bringing innovation to a stand-still. The AHA urges
    Congress to provide at least $2 billion in emergency funding to support
    organizations by offsetting the costs associated with stalled research,
    costs for restarting research once researchers can return to their
    labs, and unanticipated delays resulting from the COVID-19 pandemic
    that will cause funding overages.

        [This statement was submitted by Robert A. Harrington, M.D., FAHA,
    President, American Heart Association.]
                                     ______

     Prepared Statement of the American Indian Higher Education Consortium
        On behalf of the nation's 37 Tribal Colleges and Universities
    (TCUs), which collectively are the American Indian Higher Education
    Consortium (AIHEC), we thank you for the opportunity to share our
    fiscal year 2021 funding requests. The following is a list of
    recommendations including Department, program, and funding requests.
    Department of Education
        Office of Postsecondary Education
      --Strengthening Institutions HEA Title III--Part A (Sec. 316):
            $45,000,000 (discretionary)
      --Perkins Career and Technical Education Programs (Sec. 117):
            $12,000,000
    Department of Education
        Office of Indian Education
      --Indian Education Professional Development Program: $20,000,000
    Department of Health and Human Services
      --Administration for Children and Families/Office of Head Start
        --TCU-Head Start Partnership Program: $8,000,000 in existing funds
    Tribal Colleges and Universities: Serving Students Across Indian
            Country and Rural America
        Currently, 37 TCUs operate more than 75 campuses and sites in 16
    states. TCU geographic boundaries encompass 80 percent of American
    Indian reservations and Federal Indian trust lands. American Indian and
    Alaska Native (AI/AN) TCU students represent more than 230 federally
    recognized tribes and hail from more than 30 states. Nearly 80 percent
    of these students receive Federal financial aid, and more than half are
    first generation students. In total, TCUs serve over 165,000 American
    Indians, Alaska Natives, and other rural residents each year through a
    wide variety of academic and community-based programs. Funding cuts of
    any amount to even one TCU program would force TCUs to scale back vital
    programs and services that students rely on to complete degree and
    certificate programs needed to succeed in their chosen career paths.
    Any reduction in funding will threaten TCU accreditation status and
    will further stretch overtaxed faculty and staff or result in cuts to
    faculty and staff. The following are justifications for TCU fiscal year
    2021 funding requests.
                          u.s. department of education
    Strengthening Tribal Colleges (HEA Title III--Part A--Section 316):
            TCUs urge the Subcommittee to provide $45,000,0000 for the
            Strengthening Tribal Colleges program (HEA Title III--Part A).
        The Strengthening Institutions HEA Title III program for TCUs
    (Section 316) is specifically designed to address the critical, unmet
    needs of AI/AN students and their communities. Through this program,
    TCUs are able to provide student support services, native language
    preservation, basic upkeep of campus buildings and infrastructure,
    critical campus expansion, enterprise management systems, faculty for
    core courses, and other necessary elements for a quality educational
    experience. The Strengthening Institutions program provides formula-
    based aid to 35 TCUs through two funding sources: Part A discretionary
    funding (fiscal year 2020, $36.6 million) and Part F mandatory funding
    (fiscal year 2020, $28.2 million). Last year, TCUs feared losing nearly
    half of Title III funding with the anticipated expiration of Part F
    funding. Fortunately, the ``Fostering Undergraduate Talent by Unlocking
    Resources to Education Act (Public Law 116-91) was signed in to law on
    December 20, 2019, permanently authorizing Part F mandatory funding at
    $30 million for TCUs. Part A and Part F of the Title III program are
    essential in supporting institutional development and student services.
    We strongly urge the Subcommittee to fund the Strengthening
    Institutions HEA III Part A--TCU Program (Section 316) at $45,000,000
    million.
    Carl D. Perkins Career and Technical Education Programs
                Tribally Controlled Postsecondary Career and Technical
                        Institutions: AIHEC requests $12,000,000 to fund
                        grants under Sec. 117 of the Perkins Act.
        Carl D. Perkins Career and Technical Education Act provides a
    competitively awarded grant opportunity for tribally chartered career
    and technical institutions (Sec.117), which provide critical workforce
    development and job creation education and training programs to AI/ANs
    from tribes and communities with some of the highest unemployment rates
    in the nation.
        Native American Career and Technical Education Program (NACTEP):
    NACTEP (Sec. 116) reserves 1.25 percent of appropriated funding to
    support AI/AN career and technical programs. The TCUs strongly urge the
    Subcommittee to continue to support NACTEP, which is vital to the
    continuation of career and technical education programs offered at TCUs
    that provide job training and certifications to remote reservation
    communities.
    Office of Indian Education
                Indian Education Professional Development Program: AIHEC
                        requests $20,000,000 for grants to TCUs and other
                        institutions of higher education.
        The Indian Education Professional Development Program, administered
    by the Office of Indian Education at the U.S. Department of Education,
    provides grants to institutions of higher education to prepare and
    train AI/ANs to serve as teachers and school administrators at
    elementary and secondary schools. There is a growing teacher shortage
    across the country, especially in urban and rural communities with high
    AI/AN populations, where teacher recruitment and retention pose unique
    challenges. In communities with teacher shortages, existing obstacles
    to student success such as inadequate facilities and limited broadband
    are further compounded by overcrowded classrooms. Targeted resources
    like the Indian Education Professional Development Program help address
    this shortage and ensure that AI/AN students receive high quality
    elementary and secondary education.
        Report Language Needed: Funding for two distinct activities is
    provided under the ``Special Programs for Indian Children'' account:
    the Indian Education Professional Develop Program and Native Youth
    Community Projects. Despite increased funding in 2016 to the overall
    account, increases were only provided to Native Youth Community
    Projects; the Indian Education Professional Development Program did not
    receive increased funding. In fiscal year 2019, the Special Programs
    for Indian Children account received $67,993,000, of which $9,564,000
    was provided to the Indian Education Professional Development Program.
    AIHEC requests specific report language in order to increase funding
    for the Indian Education Professional Development Program, at a minimum
    of $20,000,000 in fiscal year 2021.
             u.s. department of health and human services programs
    Administration for Children and Families--Office of Head Start: Tribal
            Colleges and Universities Head Start Partnership Program: AIHEC
            requests $8,000,000 for the TCU-Head Start Partnership program.
        The TCU Head Start Partnership program was re-established with the
    designation of $4,000,000 within the fiscal year 2020 LHHS
    appropriations bill. TCUs have had marked success in training early
    childhood educators and Head Start teachers that are urgently needed
    across Indian Country. In 2017, 74.5 percent of Head Start teachers
    nationwide held a bachelor's degree as required by Federal law; but
    less than 42 percent of Head Start teachers met the requirement in
    Indian Country (Head Start Region 11); only 70 percent of workers in
    Region 11 met the associate-level requirements or were enrolled in
    associate's programs, compared to 90 percent nationally. TCUs are the
    most cost-effective way for filling this gap. From 2000 to 2007, the
    U.S. Department of Health and Human Services provided modest funding
    for the TCU-Head Start Program (42 U.S.C. 9843g), which helped TCUs
    build capacity in early childhood education by providing scholarships
    and stipends for Indian Head Start teachers and teacher aides to enroll
    in TCU early childhood/elementary education programs. Before the
    program ended in 2007 (ironically, the same year that Congress
    specifically authorized the program in the reauthorization of the Head
    Start Act), TCUs had trained more than 400 Head Start workers and
    teachers, many of whom have since left for higher paying jobs in
    elementary schools. Today, TCUs such as Salish Kootenai College (Pablo,
    MT) are providing culturally based early childhood education free of
    charge to local Head Start professionals. In Michigan, Bay Mills
    Community College provides online education programming for $50/credit
    to Head Start staff nationwide. However, many Head Start programs in
    Indian Country are paying far more for other sources to provide
    training. With the restoration and continuation of this modestly funded
    program, TCUs can aid in building an early childhood education
    workforce to better serve the education needs of our AI/AN children.
           substance abuse and mental health services administration
    NEW Tribal College and University Centers for Excellence in Behavioral
            Health/Substance Abuse Prevention: AIHEC requests $10,000,000
            to establish this program.
        The goal of the TCU Centers of Excellence program, similar to an
    existing SAMHSA (Substance Abuse and Mental Health Services
    Administration) program for HBCUs, is to grow a well-skilled and
    culturally competent AI/AN behavioral health workforce by developing an
    apprenticeship-based network of TCUs and partners from the health
    industry and local, tribal, state, and regional providers. The TCU
    Centers of Excellence would share best practices in curriculum
    development, program implementation, and apprenticeships; recruit
    students to careers in behavioral health fields to address mental and
    substance use disorders; provide job training in behavioral health
    fields; and prepare students for achieving credentials in behavioral
    health fields. The TCU Centers of Excellence would emphasize education,
    awareness, workforce training, and preparation for careers in mental
    and substance use treatment, prevention, and research, including
    addressing opioid abuse prevention, opioid use disorder treatment,
    serious mental illness, and suicide prevention.
    Conclusion
        Tribal Colleges and Universities provide thousands of AI/AN
    students with access to high quality, culturally appropriate,
    postsecondary education opportunities, including critical early
    childhood education and behavioral health programs. The modest Federal
    investment in TCUs has paid great dividends in terms of employment,
    education, and economic development. We ask you to renew your
    commitment to help move our students and communities toward self-
    sufficiency and request your full consideration of our fiscal year 2021
    appropriations requests. Thank you.
                                     ______

             Prepared Statement of the American Library Association
        The American Library Association (ALA) urges the Subcommittee to
    include in its regular fiscal year 2021 appropriations bill at least
    the authorized level of $232 million for programs for the Library
    Services and Technology Act (LSTA), $24.5 million for the Laura Bush
    21st Century Librarian Program administered by the Institute of Museum
    and Library Services (IMLS), and at least $30 million for the
    Innovative Approaches to Literacy (IAL) program under the Department of
    Education (DOE).
        Libraries, like other public and private institutions, are
    struggling to keep up with community needs for information resources,
    particularly during the national emergency. As the crisis continues,
    reduced tax revenue from state and local governments are already
    impacting library budgets and forcing furloughs for library staffs. At
    the same time, community demand for library services for economic
    recovery will increase markedly (as we saw during the Great Recession).
        Libraries offer streaming support for business advancement, career
    development, and online resume building for those who have been
    recently unemployed, and access to telehealth resources and trusted
    sources for public health information. Many libraries also have hotspot
    lending programs to help underserved families and students who do not
    have access to the Internet at home. Libraries are thinking creatively
    to provide services to patrons, such as streaming ``story times'' and
    author discussions to encourage young children and adult learners to
    keep reading in their homes. Libraries are leading the way in
    supporting student distance learning needs through 24-hour WiFi access
    in parking lots, homework help, mobile hotspots and other services.
        ALA is the foremost national organization providing resources to
    inspire library and information professionals to transform their
    communities through essential programs and services. For more than 140
    years, the ALA has been the trusted voice for academic, public, school,
    government and special libraries, advocating for the profession and the
    library's role in advancing learning and ensuring access to information
    for all.
        LSTA funding of at least $232 million for Grants to States and
    $24.5 million for the Laura Bush 21st Century Librarian Program will
    support your local library. If Senators haven't been to a library
    recently, we urge Senators to visit their local library and see the
    range of services they provide constituents.
        The bulk of LSTA funds are distributed to each state through the
    Institute of Museum and Library Services (IMLS) according to a
    population-based grant formula. Each state must provide a 33 percent
    match and determines at the state level how to meet local needs and
    best allocate its LSTA grant awards. Libraries have used LSTA funding
    for a broad range of diverse and innovative programs that profoundly
    touch and better the lives of tens of millions of Americans in every
    state in the nation, including particularly service to people with
    disabilities, veterans, and job seekers. LSTA is truly a local
    decisionmaking success story and a shining example of how a small
    Federal investment can be efficiently and reliably leveraged into
    dramatic state and local social and economic results. Here are just a
    few current examples among many thousands made possible by LSTA over
    time:
      --Libraries across Missouri have used LSTA Grants to participate in
            the annual Beanstalk Reading Challenge. The Challenge provides
            customized reading support, books, tracking, and incentives for
            young readers at numerous libraries in the state, including
            Carthage Public Library, Little Dixie Regional Libraries, Rolla
            Public Library, and University City Public Library.
      --LSTA Grants have supported the activities of the Washington Digital
            Heritage in carrying out a variety of digital initiatives
            focuses on archival and special collections of cultural and/or
            historical significance. These grants help preserve the stories
            of local communities and celebrate a common heritage.
      --The Alabama Regional Library for the Blind and Physically
            Handicapped has provided digital recordings and equipment,
            braille material, and services to more than 4,500 active
            patrons since 1978. LSTA Grants help make these services
            possible.
      --Caswell (NC) County Public Library used its grant to create a
            Learning Lab and Workforce Development Lab assisting local
            businesses access to tailored employment assistance, equipment,
            and access to a business and career center. A state-wide
            priority includes meeting needs of local business for workforce
            support.
      --Dr. Soohyung Joo, assistant professor at the University of Kentucky
            School of Information Science, was awarded a Laura Bush 21st
            Century Librarian Program Planning Grant for her work towards
            helping UK libraries examine research needs of patrons,
            librarians, administrators, and scholars. This research helped
            refocus the services and curricular provided at UK libraries.
        Patrons described above were the direct beneficiaries of the LSTA
    ``Grants to States'' program administered by IMLS. Grants support
    veterans, entrepreneurs, job seekers, taxpayers, children, and many
    others throughout our nation. The President's proposal to eliminate
    LSTA funding, in fact any cut to LSTA, will jeopardize vital and highly
    cost-effective programs that benefit millions of Americans in every
    state, and help build our economy one job and one community at a time.
    These community resources are needed now more than ever.
        Thanks to LSTA and other IMLS funds, many state libraries can
    support Libraries for the Blind and Physically Handicapped or Talking
    Book services, which provide access to reading materials in alternate
    formats. There is no dedicated Federal funding stream for these
    individuals at the local and state level. LSTA Grants to States funding
    often fills this need.
        Native American tribes are eligible to apply for LSTA grants
    through the Native American Library Services program which currently
    accounts for more than 8 percent of LSTA funding. These grants support
    existing library operations for tribal communities, enhancing digital
    connections, supporting professional development, and promote lifelong
    learning for tribes. Recent recipients of these grants include the
    Native Village of Port Graham (AK), Aroostook Micmac Council (ME),
    Little Travers Bay Bands of Odawa Indians (MI), and Kat Nation (OK).
        Accordingly, ALA asks that the Subcommittee provide at least $232
    million for LSTA and $24.5 million for the Laura Bush 21st Century
    Librarian Program in fiscal year 2021 to ensure that Americans of all
    ages continue to have access to important resources at their local
    library. ALA respectfully submits that there can be few, if any, more
    democratic, cost-effective and impactful uses of Federal dollars than
    LSTA in the entirety of the Federal budget.
        In addition to supporting LSTA, ALA also asks that you maintain the
    modest, but critical, Federal investment of $30 million in the
    Innovative Approaches to Literacy (IAL) program, which was authorized
    under Every Student Succeeds Act. IAL provides competitive awards to
    school libraries and national not-for-profit organizations (including
    partnerships that reach families outside of local educational agencies)
    to put books into the hands of children and their families in high-need
    communities.
        Providing books and childhood literacy for such children is crucial
    to their learning to read, which is crucial to their--and the
    nation's--economic futures. Studies have shown that developing early
    childhood reading proficiency is directly correlated to success in K-12
    and college education and in careers. IAL also supports parental
    engagement in their children's reading life and focuses on promoting
    student literacy from birth through high school. IAL grants have been
    awarded during the life of the program to almost every state in the
    nation. Schools and non-profits across the country have received
    grants, including the Bering Strait (AK) School District, The
    Children's Reading Foundation (Kennewick, WA), Kansas City (MO) School
    District, Cuero (TX) School District, and as well as many others.
        For families living in poverty, access to reading materials is
    severely limited. Children in such households have fewer books in their
    homes than their peers, which hinders their ability to prepare for
    school and to stay on track. IAL helps bridge that gap. Accordingly, we
    urge the Subcommittee to foster this work by continuing to invest at
    least $30 million in IAL.
        ALA understands the tight fiscal constraints on the Subcommittee,
    and we appreciate its continued dedicated support of LSTA and IAL.
    Thank you for your commitment to sustaining and strengthening our
    communities and our nation by supporting America's libraries.

        [This statement was submitted by Kathi Kromer, Associate Executive
    Director, American Library Association.]
                                     ______

              Prepared Statement of the American Liver Foundation
           summary of fiscal year 2021 appropriations recommendations
    _______________________________________________________________________

      --Please provide the National Institutes of Health (NIH) with a
            funding increase of at least $3 billion for to bring total
            agency funding up to a minimum of $44.7 billion annually.
        --Please provide proportional increases for NIH Institutes and
                Centers, including the National Institute of Diabetes and
                Digestive and Kidney Diseases (NIDDK) and the National
                Institute of Allergy and Infectious Diseases (NIAID).
      --Please provide the Centers for Disease Control and Prevention (CDC)
            with a funding increase of at least $500 million in
            discretionary resources to bring total agency funding up to a
            minimum of $8.3 billion annually.
        --Please provide $5 million in line-item funding for a CDC
                ``Chronic Disease Education and Awareness Program'' as
                outlined in the fiscal year 2020 House L-HHS Appropriations
                Bill.
        --Please provide at least $58 million for the CDC's new Elimination
                Initiative focused on the nexus of the opioid epidemic and
                the spike in infectious diseases.
        --Please provide a meaningful fiscal year 2021 funding increase of
                $95 million for the Division of Viral Hepatitis (DVH) at
                the National Center for HIV/AIDS, Viral Hepatitis, STD, and
                TB Prevention, which was level-funded at $39 million for
                fiscal year 2020.
      --Please provide the Health Resources and Services Administration
            (HRSA) with a funding increase to at least $8.8 billion for
            fiscal year 2021.
        --Please continue to support and encourage efforts to improve organ
                donation and otherwise enhance the ability of donor livers
                for individuals waiting on the transplant list for a
                donated liver.
    _______________________________________________________________________

        Thank you for the opportunity to submit testimony on behalf of the
    American Liver Foundation (ALF) and the liver disease community.
    Chairman Blunt, Ranking Member Murray, and distinguished members of the
    subcommittee, we extend our thanks for the significant investments in
    HHS, particularly NIH, provided for fiscal year 2020. Please maintain
    this commitment and further enhances this support for medical research
    and public health programs during the fiscal year 2021 appropriations
    process. Thank you again.
                              about the foundation
        Founded in 1976, the American Liver Foundation (ALF) is the
    nation's largest patient advocacy organization for people with liver
    disease. ALF reaches more than?2?million individuals each year with
    health information, education and support services via its national
    office,?16?U.S. divisions and an active online presence. Recognized as
    a trusted voice for liver disease patients, ALF also operates a
    national toll-free helpline (800-GO-LIVER), educates patients,
    policymakers and the public, and provides grants to early-career
    researchers to help find a cure for all liver diseases. ALF is
    celebrating more than 40 years of turning patients into survivors. For
    more information about ALF, please visit liverfoundation.org.
                                  liver facts
        The liver is one of the body's largest organs, performing hundreds
    of functions daily including, removal of harmful substances from the
    blood, digestion of fat, and storing of energy. Non-alcoholic fatty
    liver disease (NAFLD), hepatitis C, and heavy alcohol consumption are
    the most common causes of chronic liver disease or cirrhosis (severe
    liver damage) in the U.S. Approximately 30 percent of adults and 3-10
    percent of children have excessive fat in the liver or NAFLD which can
    lead to a severe liver disease called non-alcoholic steatohepatitis
    (NASH). Approximately 4.4 million Americans are living with Hepatitis B
    or C but most do not know they are infected. More than 2 million
    Americans are living with alcohol related liver disease. Approximately
    5.5 million Americans are living with chronic liver disease or
    cirrhosis. Vaccinations for hepatitis A and B and treatments for
    hepatitis C are helping to change the course of this chronic life
    altering disease for the patient community.
                       liver cancer public health at cdc
        CDC hosts many important programs for cancer as well as chronic
    disease, but none focused on addressing liver cancer. While liver
    cancer is a leading killer, it is also preventable and more easily
    managed if diagnosed early. The reality though is that risk factors are
    not well known and there is an overall lack of public and professional
    awareness about preventative practices and properly managing the
    condition. CDC should have dedicated resources and congressional
    encouragement to conduct liver cancer activities so this patient
    community can enjoy the same benefits and public health improvements as
    similar communities with ongoing CDC programs. Rather than having
    Congress constantly adding and removing funding for timely activities,
    public health experts at CDC should have a dedicated pot of resources
    to administer grants and partnerships in meritorious and impactful
    areas.
                                 organ donation
        Consistently, the number of organs available for transplantation on
    an annual basis amounts to only a fraction of the number of patients on
    the transplant list. Compounding this situation is the fact that fatty
    liver disease affects a large and growing number of individuals and
    makes livers unavailable for transplantation. Another complicating
    factor is the fact that the rationing of cures for hepatitis ensures
    that many patients who could otherwise be healthy end up on the
    transplant list too and arbitrarily deny available organs to other
    patients facing a variety of life-threatening illnesses. Please promote
    organ donation and otherwise work to ensure Medicaid and other patients
    impacted by hepatitis receive curative therapy when medically
    appropriate.
                              the opioid epidemic
        CDC has dubbed opioids and the infectious diseases that arrive in
    the wake of the opioid crisis a ``dual epidemic''. Due to the rise in
    rates of injection drug use, CDC has identified a 400 percent increase
    in rates of hepatitis C among 20--29 year olds an 300 percent increase
    among 30--39 year olds. Last year, the elimination initiative was
    established at CDC, and the current budget request recommends greatly
    enhancing support from $5 million to $58 million. Significantly
    enhanced investment in this area is certainly warranted given the
    ongoing need.
                              patient perspectives
        Alison.--Alison is now a healthy 25-year-old from Trumbull,
    Connecticut, only 5 years ago she was near death. Alison had been
    suffering for most of her life with primary sclerosing cholangitis
    (PSC), a condition that left her in need of a live-saving liver
    transplant. On October 19th, 2009, Alison began her new life when her
    transplant was successfully performed at Yale-New Haven Hospital.
    Further complications ensued. Alison needed three additional surgeries
    to ensure her health and that of her new liver. Today, she is healthy.
        Kevin.--In May 2007, a medical team at New York Columbia
    Presbyterian Hospital conducted its first living donor liver transplant
    surgery on a bile duct cancer patient. The patient was Kevin, my
    younger brother. I was the living donor. The transplant worked, but
    Kevin had to endure multiple follow-up surgeries to address a bile
    leakage that would not stop. But now, over 10 years later, he has long
    since healed and doing great. We were lucky. And we know it.
        Despite advances in medical and surgical science, the demand for
    organs continues to vastly exceed the number of donors. Here, in New
    York, only 27 percent of people age 18 and over have enrolled in the
    New York State Donate Life Registry. But every ten minutes another
    person is added to the national transplant waiting list. We need to
    encourage more people to sign up to donate organs.
        David.--In October 2014 my mother Geraldine passed away after a
    very brief and completely unexpected battle with late-stage NASH. They
    call NASH the ``silent killer'' and in Mom's case it was certainly
    true; she was never diagnosed with any form of liver disease at all
    before NASH. We had noticed some yellowing of her eyes and convinced
    her to go to the doctor about a month earlier, but it took time to get
    an appointment with a specialist, who checked her into a hospital upon
    the visit. I founded NASHAWARE.com to help raise awareness and educate
    others. If I can help even a few people it will all be worth it. But I
    still want to do much more.

        [This statement was submitted by Lynn Seim, Executive Vice
    President and COO, American Liver Foundation.]
                                     ______

              Prepared Statement of the American Lung Association
        The American Lung Association is pleased to submit its
    recommendations for fiscal year 2021 to the Labor, Health and Human
    Services, and Education Appropriations Subcommittee.
        The American Lung Association was founded in 1904 to fight
    tuberculosis and is one of the oldest voluntary health organizations in
    the United States. Since the beginning, the Lung Association has been
    on the front lines advocating for laws that protect the air we breathe
    and our lungs. Accordingly, the Lung Association is the leading
    organization working to save lives by improving lung health and
    preventing lung disease through education, advocacy and research. As
    the result of funding from this Committee, public health and research
    programs will help to prevent lung disease, improve health and, by
    extension, save the lives of millions of Americans.
           strengthening and rebuilding public health infrastructure
        The COVID-19 pandemic has unscored the need for more robust
    investments in our nation's public health infrastructure and supporting
    programs that respond to public health emergencies. Several ideas have
    been discussed, including a revision of the fiscal year 2021
    discretionary budget caps in general, an exemption of certain public
    health programs from the caps, and the creation of a health defense
    program designed to address emerging crises that would not be confined
    to the caps. The American Lung Association urges the committee to
    consider these and other approaches to build and strengthen the
    capacity of our national public health system.
        The COVID-19 pandemic has also highlighted the importance of
    preventing and managing chronic lung conditions. Individuals living
    with lung disease are among the most at risk of serious health
    complications as a result of COVID-19. The Lung Association recognizes
    the tremendous challenge the Committee faces in responding to COVID-19
    and urges the Committee to continue to invest in CDC programs that help
    smokers quit, promote asthma control and support prevention and
    treatment of other lung diseases, including COPD and lung cancer.
       improving public health and maintaining our investment in medical
                                    research
        The American Lung Association strongly supports an increase in
    funding to $44.7 billion for the National Institute of Health (NIH). We
    need sustained investments in NIH so that the promise of biomedical
    research can be achieved. The Lung Association supports robust funding
    increases for the individual institutes within NIH, recognizing the
    need for research funding increases to ensure the pace of research is
    maintained across NIH.
                                  lung disease
        Lung disease is the third highest killer in America, taking the
    lives of almost 414,000 Americans each year. It has been estimated that
    more than 36 million Americans suffer from a chronic lung disease and
    lung disease costs the economy $129 billion each year.
                     the prevention and public health fund
        The Lung Association strongly supports the Prevention and Public
    Health Fund that was established in the Affordable Care Act. We ask the
    Committee to oppose any attempts to divert or use the Fund for any
    purposes other than what it was originally intended. The Prevention
    Fund provides funding to the Centers for Disease Control and Prevention
    (CDC) and its critical public health initiatives. The Prevention Fund
    also supports CDC's media campaign ``Tips from Former Smokers.''
                                  lung cancer
        Lung cancer is the number one cancer killer of both women and men.
    It is estimated that 228,820 new cases of lung cancer will be diagnosed
    in 2020, and more than 135,000 Americans will die from the disease in
    2020. Survival rates for lung cancer tend to be lower than those of
    other leading cancers due to the lack of early detection and diagnosis.
    African Americans are more likely to die from lung cancer than persons
    of any other racial group. We ask the Committee to increase funding for
    the National Institutes of Health to $44.7 billion in fiscal year 2021
    and to include increased funding for lung cancer research as well as
    support for the Cancer Moonshoot and the All of Us Program.
                                  tobacco use
        The use of tobacco is the number one preventable cause of death in
    the United States. More than 37 million American adults smoke and
    approximately half a million people die of tobacco-related disease each
    year. Annual healthcare and lost productivity cost more than $300
    billion in the U.S. each year. Each day, about 1,600 kids under 18
    years of age try their first cigarette and close to 200 kids become
    new, regular daily smokers. Additionally, e-cigarette use continues to
    increase among our nation's youth, and now 1 in 3 high school students
    use at least one tobacco product.
        The CDC Office on Smoking and Health (OSH) must continue to receive
    robust funding to help combat the tobacco-caused diseases that are
    burdening the nation. Public health interventions have been
    scientifically proven to reduce tobacco use, the leading cause of
    preventable death in the United States. The American Lung Association
    urges that $310 million be appropriated to OSH for fiscal year 2021.
        The American Lung Association respectfully requests the Committee's
    support for the Office of Smoking and Health and the ``Tips from Former
    Smokers'' Campaign. Over the past 5 years, 500,000 Americans have
    successfully quit smoking because of ``Tips'' and millions more have
    made quit attempts. The ``Tips'' campaign has been an incredible return
    on investment that continues to generate positive outcomes. An accepted
    threshold for cost-effective public health interventions is
    approximately $50,000. The 2012 Tips campaign spent $480 per smoker who
    quit and $393 per year of life saved.
                                     asthma
        Over 24 million Americans have asthma, including 5.5 million
    children. It is a highly prevalent and costly disease. The nation is
    making progress to combat asthma, but this advancement can only
    continue with sustained investment. Asthma costs the U.S. an estimated
    $82 billion in healthcare costs, lost productivity and mortality.
    Almost half of children in the U.S. miss one or more days of school due
    to asthma symptoms.
        The American Lung Association asks that you appropriate $34 million
    to CDC's National Asthma Control Program (NACP) in fiscal year 2021.
    The NACP tracks asthma prevalence, promotes asthma control and
    prevention and builds capacity in state programs. This program has been
    highly effective: the rate of asthma has increased, yet asthma
    mortality and morbidity rates have decreased. Currently, only 24 states
    and Puerto Rico receive funding--leaving a nationwide public health
    void that can lead to unnecessary asthma-related attacks and healthcare
    costs. Increased funding could help develop asthma programs in the
    remaining 26 states and the District of Columbia as well as allow for
    better surveillance, management and treatment of asthma. Currently, the
    CDC does not have comprehensive surveillance data for asthma
    nationwide, which makes it difficult to compare statistics across
    states, cities and territories. An increase in funding would provide
    CDC with resources to conduct better monitoring of asthma and identify
    states, regions and communities with the greatest burden of disease.
        Additionally, we recognize the importance of robust and sustained
    increases for the National Heart, Lung and Blood Institute, the
    National Institute of Allergy and Infectious Diseases and the National
    Institute for Environmental Health Sciences. With increased support,
    these agencies will be able to continue their investments in asthma
    research in pursuit of treatments and cures.
                    chronic disease education and awareness
        COPD is the fourth leading cause of death in the U.S. More than 18
    million U.S. adults had evidence of impaired lung function, indicating
    an under diagnosis of COPD. In 2016, 151,078 people in the U.S. died of
    COPD, representing one COPD death every 3.5 minutes. The American Lung
    Association also asks the Committee to continue its support of the
    National Heart, Lung and Blood Institute working with CDC and other
    appropriate agencies to act on its national action plan to address
    COPD, which should include public awareness and surveillance
    activities. The American Lung Association requests sustained and robust
    funding for the National Heart, Lung and Blood Institute as well as
    funding for CDC to implement the National COPD Action Plan.
        In fiscal year 2020, the House created a new line for chronic
    disease education and awareness within CDC's National Center for
    Chronic Disease Prevention and Health Promotion. This additional line
    will allow CDC to respond to chronic diseases--including COPD--that do
    not have stand-alone programs. The American Lung Association is
    requesting an initial investment of $5 million in funding for this
    program.
                    impact of climate change on lung health
        CDC's Climate and Health Program is the only HHS program devoted to
    identifying the risks and developing effective responses to the health
    impacts of climate change, including worsening air pollution; diseases
    that emerge in new areas; stronger and longer heat waves; and more
    frequent and severe droughts, and provides guidance to states in
    adaptation. Pilot projects in 16 states and two city health departments
    use CDC's Building Resilience Against Climate Effects (BRACE) framework
    to develop and implement health adaptation plans and address gaps in
    critical public health functions and services. As climate-related
    challenges intensify, CDC must have increased resources to support
    states and cities in meeting the challenge. The Lung Association
    supports $15 million for the Centers for Disease Control and
    Prevention's Climate and Health Program.
                                  tuberculosis
        TB, an airborne infectious disease, is a leading global infectious
    killer, causing 1.3 million deaths annually. In the U.S., every state
    reports cases of TB (Tuberculosis) annually, with California, Texas,
    Hawaii and Alaska having the highest burdens. TB outbreaks continue to
    occur across the country in schools, workplaces and prisons, costing
    the U.S. over $460 million annually. Drug-resistant TB poses a
    particular challenge to TB control due to the high costs of treatment
    and intensive healthcare resources required. Treatment costs for
    multidrug-resistant (MDR) TB range from $100,000 to $300,000 per case
    and can be over $1 million for treatment of extensively drug resistant
    (XDR) TB, which can outstrip state and local public health department
    budgets. We request that Congress increase funding for tuberculosis
    programs at CDC to $243 million for fiscal year 2021.
                                   conclusion
        Lung disease remains a growing problem in the United States and is
    leading the nation as the third highest killer. The COVID-19 pandemic
    demonstrates the critical need to invest in public health programs so
    that they can respond to new and emerging diseases while continuing to
    direct resources towards chronic lung disease. The level of support
    this Committee approves for lung disease programs should be reflective
    of the urgency and magnitude of impact that lung disease has had on
    Americans.
        The American Lung Association respectively requests that the
    Committee supports funding requests and strongly encourages you to
    oppose all policy riders on appropriations bills. Policy riders can
    weaken key lung health protections, including those in the Affordable
    Care Act, the Clean Air Act and the Tobacco Control Act. The Lung
    Association is appreciative of your support, and we thank you for your
    consideration of our recommendations.

        [This statement was submitted by Harold P. Wimmer, National
    President and CEO, American Lung Association.]
                                     ______

         Prepared Statement of the American Massage Therapy Association
        The American Massage Therapy Association (AMTA) appreciates the
    opportunity to submit a statement to the Senate Subcommittee on Labor,
    Health and Human Services, and Education, and Related Agencies in
    support of continued robust funding in fiscal year 2021 for the
    National Center for Complementary and Integrative Health (NCCIH) within
    the National Institutes of Health (NIH).
        Established in 1943 and numbering over 94,000 members, AMTA works
    to advance the massage therapy profession through the promotion of fair
    and consistent licensing of massage therapists in all states, public
    education on the benefits of massage therapy, and support of research
    to advance knowledge about massage therapy. Massage therapists are
    currently licensed in 45 states and the District of Columbia.
        We would like to note at the outset some examples of the growing
    support and recognition of the health benefits of massage therapy that
    have occurred as a direct result of an ever-growing body of research,
    after which we will note some examples of areas where continued Federal
    support is crucial to help us continue to move forward.
        Research has served to increase support for massage therapy by
    policymakers at both the Federal and state level, as we learn more
    about the health benefits of massage therapy as part of an integrative
    approach to patient care. NCCIH notes the value of massage therapy for
    a wide variety of health conditions involving both acute and chronic
    pain, including low back pain, neck and shoulder pain, symptoms and
    side effects associated with certain cancers, fibromyalgia, HIV/AIDS,
    among others.
        In addition to NIH, massage therapy is supported by the American
    College of Physicians and The Joint Commission. Massage is currently
    utilized in many nationally renowned hospitals and other institutions,
    such as the Mayo Clinic, M.D. Anderson Cancer Center, Duke Integrative
    Medicine, the Cleveland Clinic, and Memorial Sloan Kettering Cancer
    Center. Finally, CMS includes massage therapy provided by a state
    licensed massage therapist as a supplemental benefit for pain
    management in Medicare Advantage plans, and massage is also a covered
    benefit for our nation's veterans and active duty military personnel
        In recent years, policymakers have also recognized the benefits of
    massage therapy as a non- pharmacologic alternative to opioid use to
    manage pain. Massage therapy is specifically supported in the May 2019
    final report of the ``HHS Best Practices Pain Management Task Force
    (PMTF)'' and is included in the PMTF ``Pain Management Toolbox'' as an
    example of a treatment modality that should be considered as part of an
    overall integrative and collaborative care model to ensure optimal
    patient outcomes. https://www.hhs.gov/sites/default/files/pmtf-final-
    report-2019-05-23.pdf.
        As well, massage has been specifically noted in guidelines for non
    pharmacologic opioid alternatives issued by the Attorney General of
    West Virginia; and, it is among a list of four non-pharmacologic
    approaches to pain in a September 18, 2017 letter to American's Health
    Insurance Plans, signed by 37 Attorneys General, which urges health
    insurance companies to encourage healthcare providers to prioritize
    non-opioid pain management options for chronic pain, as follows:
        ``When patients seek treatment for any of the myriad conditions
    that cause chronic pain, doctors should be encouraged to explore and
    prescribe effective non-opioid alternatives, ranging from non-opioid
    medications (such as NSAIDs) to physical therapy, acupuncture, massage,
    and chiropractic care.''
        Despite the demonstrated value and efficacy of massage therapy
    through research, we know that more needs to be done. Long standing CMS
    policy notes the critical importance of research in driving Medicare
    coverage and reimbursement for medical procedures, therapies, and
    interventions. As such, additional research is needed to help assess
    any potential risks and the optimal benefits of massage for particular
    demographic groups, including patients as young as infants up to
    Medicare beneficiaries, as well as the scope and length of time needed
    for massage therapy for specific conditions in order to determine the
    optimal amount of therapy needed to achieve both short and long term
    results. Last, we need to better understand the underlying mechanisms
    of pain, and how and why pain manifests differently for different
    patients.
        For the last 30 years, the Massage Therapy Foundation (MTF) a
    501(c) (3) organization, working with AMTA, has provided over $1
    million in research grants studying the science behind therapeutic
    massage. This seed money has funded needed research on a wide range of
    topics including: the effectiveness of massage therapy in decreasing
    muscle atrophy to help individuals recover from muscle disuse, the
    benefits of massage for patients with severe heart failure, and the
    effect of massage therapy on opioid use in hospital pediatric
    populations. Many of these efforts have been specifically designed to
    include racially diverse and underserved populations.
        While the MTF seed money has helped refine our collective
    understanding about massage in many important areas, it is critical
    that NCCIH continue to drive forward the most promising science
    surrounding massage and other integrative therapies to address both
    acute and chronic pain conditions. In these most challenging times, the
    need to advance and support evidence-based non-opioid alternatives for
    pain management has likely never been more important.
        Many experts believe that COVID-19 and opioid misuse will
    unfortunately impact and worsen each other, because of the volume of
    deferred medical treatments over these last months, combined with
    overall rising levels of anxiety and stress throughout our society.
    More research is needed to determine the impact of the COVID-19
    pandemic on patients currently experiencing chronic pain: early
    anecdotal evidence appears to indicate that patients with chronic pain
    during the COVID pandemic are beginning to exhibit symptoms similar to
    those who are have PTSD.
        We know that massage therapy can improve health outcomes and is
    also among the most cost-effective therapies that can save healthcare
    expenditures in the long run. Massage therapy demonstrably reduces or
    mitigates reliance on opioids to address pain. Massage therapy can
    serve as a 'portal' to increase patient involvement in other important
    health activities, e.g. research shows that patients who obtain massage
    are more likely to be able to move better, and thus engage in other
    physician-prescribed activities such as corrective exercise programs.
        We recognize the challenges that Congress faces in these difficult
    times. We encourage the Subcommittee to include a sustained and
    meaningful funding level for NIH and NCCIH that supports the role of
    integrative therapies to help mitigate opioid abuse and misuse, and
    which will enable continued advancements in the use of non
    pharmacologic therapies such as massage.
        Sincerely.

        [This statement was submitted by James Specker, Director, Industry
    and
    Government Relations, American Massage Therapy Association.]
                                     ______

           Prepared Statement of the American National Red Cross and
                         the United Nations Foundation
        Chairman Roy Blunt, Ranking Member Patty Murray, and Members of the
    Subcommittee, the American Red Cross and the United Nations Foundation
    appreciate the opportunity to submit testimony. We are writing today in
    support of measles and rubella control activities of the U.S. Centers
    for Disease Control and Prevention (CDC).
        We request that Congress invest $50 million for CDC's global
    measles and rubella elimination efforts for fiscal year 2021. The
    American Red Cross and United Nations Foundation recognize the
    leadership that Congress has shown in funding CDC in prior years and
    urge Congress to protect the CDC's funding necessary for their global
    measles control activities for fiscal year 2021 at $50 million, which
    is part of the $226 million for the overall Global Immunization
    Programs line.
                              covid-19 environment
        The outbreak and eventual pandemic status of the COVID-19 disease
    has ushered in a new global reality, particularly related to infectious
    disease. Immediate supplemental funding for the emergency response is
    critical to turn the tide against the COVID-19 both domestically and
    abroad. However, investments in global health programs through the
    regular appropriations process are equally vital to ensure that gains
    made in reducing maternal and child mortality and morbidity are not
    lost, and that the global health infrastructure established through
    these investments is preserved and strengthened.
        Global estimates indicate that more than 117 million children in 37
    countries may miss out on life-saving measles vaccines. Measles
    immunization campaigns are delayed in more than 24 countries increasing
    the risk of future outbreaks. Among other benefits, this global health
    architecture is vital to protecting global health security by detecting
    emerging infectious diseases like COVID-19, establishing networks of
    laboratories capable of processing diagnostics, and bolstering the
    global public health workforce of trained professionals and volunteers
    who are often the first responders during health crises.
        eliminating measles and rubella: american leadership through cdc
        The United States is the leader in the drive to eliminate measles
    and rubella globally. Congressional support has enabled CDC to detect,
    prevent, detect, respond to vaccine preventable threats including
    measles and rubella. With this context in mind, we respectfully provide
    the following justification for robust investment in CDC's global
    measles and rubella elimination efforts. The global immunization
    infrastructure is built off investments initially made by polio
    eradication and strengthened by continuing under measles and rubella
    elimination. In 2019, there were major outbreaks of measles in every
    major region of the world. CDC supported 8 measles outbreak countries
    and immunization activities in 6 non-outbreak countries leading to more
    than 26 million people vaccinated globally in 2019. In February 2020,
    CDC's Center for Global Health activated the Measles Incident
    Management System (MIMS) to help accelerate the response to global
    measles outbreaks. The Measles & Rubella Initiative, of which CDC is a
    core partner, is fully committed to supporting countries to maintain
    and restart measles immunization campaigns when it is safe to do so.
        CDC's core strength is disease surveillance and data analysis,
    which allows countries to better design, plan, and implement measles
    elimination activities and outbreak response immunization campaigns.
    CDC played a key role in assuring the quality of supplemental campaigns
    in Samoa's measles outbreak and helped re-establish case-based, lab-
    supported measles surveillance in Samoa as the outbreak ended. In D.R.
    Congo, CDC's data analysis helped the country strengthen its measles
    program and conduct outbreak response activities. The result has been a
    marked decrease in measles cases after vaccination, while the country
    also fought outbreaks of Ebola and circulating vaccine-derived
    poliovirus. Finally, the CDC Global Measles and Rubella laboratory
    provides the backbone of support for training laboratorians, providing
    reagents needed for measles testing, and serving as a global reference
    lab for measles and rubella.
                            why measles and rubella?
        U.S. leadership has saved the lives of 21.1 million children
    between 2000 and 2018 the Measles & Rubella Initiative drove measles
    deaths down by 73 percent.
        Measles is a highly contagious disease that can cause blindness,
    swelling of the brain, and death. Nine out of ten people who are not
    immune to measles will contract the disease if they come into contact
    with a contagious person, and there are long-term damages to the immune
    system for those who contract the virus. The rubella virus is a leading
    infectious cause of birth defects in the world despite availability of
    an affordable, effective vaccine since 1969. Every day, roughly 384
    children still die of measles-related complications. When rubella
    occurs early in a pregnancy, it can cause miscarriages, stillbirths, or
    a constellation of severe birth defects that can impact vision,
    hearing, heart health, overall development.
        Since 2000, measles vaccines have been the single greatest
    contribution in reducing preventable child deaths globally. We've had
    safe and effective vaccines for both rubella and measles for over 50
    years, but unfortunately vaccination rates globally have stagnated for
    almost a decade.
                             domestic implications
        In 2019 the U.S. reported 1,282 cases of measles in 32 states, the
    largest number of cases since 1992. Major outbreaks in New York and
    Washington state have been linked to importation of the disease from
    Israel and Ukraine by unvaccinated travelers. Controlling measles and
    rubella cases in other countries also protects adults and children in
    the U.S. In the United States, measles control measures have been
    strengthened, and endemic transmission of measles cases has been
    eliminated since 2000 and rubella in 2002. However, importations of
    measles cases into this country continue to occur each year.
        Measles spreads much more quickly than the flu or the Ebola virus.
    A single person infected with measles can infect up to 18 other
    unvaccinated people, compared with three for Ebola. The 2014-2015 Ebola
    outbreak in Guinea, Sierra Leone and Liberia killed a total of 11,310
    people. By comparison 2014, measles killed nearly 115,000 people
    worldwide, more than 10 times the number of deaths from Ebola. Measles
    can also cause severe complications such as pneumonia and encephalitis.
    In addition, each year more than 100,000 children are born with
    congenital rubella syndrome (CRS). CRS is the leading vaccine
    preventable cause of severe birth defects worldwide. These birth
    defects can include blindness, deafness, heart defects and mental
    retardation. CRS is very costly to treat, yet very inexpensive to
    prevent. Working closely with host governments, the Measles & Rubella
    Initiative has been the main international supporter of mass measles
    immunization campaigns since 2001.
        Responding to a measles outbreak can cost state and local health
    departments $100,000 per case to halt disease spread. One in four cases
    of measles requires hospitalization, costing up to $15,000 per patient.
    For people experiencing complications such as encephalitis, occurring
    in one in 1,000 cases, the diagnosis and treatments can cost patients
    more than $100,000. In the U.S., caring for a person with congenital
    rubella syndrome can cost close to $1 million over the patient's
    lifetime.
        Eliminating measles and rubella is the right thing to do for
    children to meet their full potential. The $58 to $1 return on
    investment, coupled with the benefit of protecting American children
    against importation of measles into the U.S., demonstrates that
    investments in CDC's measles and rubella elimination program is an
    excellent use of taxpayer dollars.
                        the measles & rubella initiative
        The Measles & Rubella Initiative (M&RI)--which includes the
    American Red Cross, CDC, UNICEF, the United Nations Foundation and WHO,
    as well as Gavi, the Vaccine Alliance, helps countries respond to
    measles outbreaks, through key interventions like supplementary
    vaccination campaigns and emergency response.
        M&RI has achieved outstanding results by supporting the vaccination
    of nearly three billion individuals in over 90 countries since 2001 and
    saving the lives of more than 21.1 million children. In part due to
    M&RI, global measles mortality has dropped 73 percent, from an
    estimated 545,000 deaths in 2000 to an approximately 114,000 in 2018
    (the latest year for which data is available), mostly children under
    the age of five. During this same period, measles deaths in Africa fell
    by 86 percent.
        Despite these gains, we continue to see unfortunate and preventable
    deaths and complications due to both measles and rubella. In 2018, the
    last year for which data is available, every day approximately 384
    children died of measles-related complications. These deaths could have
    been prevented with a safe, effective and inexpensive vaccine--
    generally, less than $2 USD in lower income countries. Measles is among
    the most contagious diseases ever known, and a top killer of children
    in low-income countries where children have little or no access to
    medical treatment and are often malnourished. The rubella virus is a
    leading infectious cause of birth defects in the world despite
    availability of an affordable, effective vaccine since 1969.
        The majority of measles vaccination campaigns have been able to
    reach more than 90 percent of their target populations. Countries
    recognize the opportunity that measles vaccination campaigns provide in
    accessing mothers and young children and integrating the campaigns with
    other life-saving health interventions has become the norm. The
    provision of multiple child health interventions during a single
    campaign is far less expensive than delivering the interventions
    separately and has a far greater impact on a child's health than a
    single campaign. In addition to measles vaccine, other health
    interventions are often distributed during campaigns, including:
    administering vitamin A, which is crucial for preventing blindness in
    under nourished children; de-worming medicine to reduce malnutrition;
    doses of oral polio vaccines; and distributing insecticide treated bed
    nets to help prevent malaria and screening for malnutrition.
        In addition to the lifesaving benefits of measles vaccines,
    immunization makes sound economic sense. A recent study by Johns
    Hopkins University revealed the economic benefits of increased
    investment in global vaccination programs. The study compared the costs
    for vaccinating against 10 disease antigens in 94 low- and middle-
    income countries during the period 2011-2020 versus the costs for
    estimated treatments of unimmunized individuals during the same period.
    Their findings show, on average, every $1 invested in these 10
    immunizations produces $44 in savings in healthcare costs, lost wages,
    and economic productivity. The return on investment for measles
    immunization was particularly high, at $58 saved for every $1 invested.
        Securing sufficient funding for measles and rubella-control
    activities both globally and nationally is critical. The decrease in
    donor funds available at a global level to support measles and rubella
    elimination activities makes increased political commitment and country
    ownership of the activities critical for achieving and sustaining the
    goal of reducing measles mortality by 95 percent. Implementation of
    timely measles and rubella campaigns is increasingly dependent upon
    countries funding these activities locally, which can be challenging
    under such downward financial pressure.
        If such challenges are not addressed, the remarkable gains made
    since 2000 will be lost and a major resurgence in measles death and
    disability will occur. Measles is one of the most contagious diseases
    know to humans and, due to our highly interconnected world, measles can
    be spread globally including to countries that have already eliminated
    the disease. The threat of importation of measles was one of the
    reasons that the Global Health Security Agenda has selected measles as
    an important indicator of whether a country's routine immunization
    system is vaccinating all children.
             the role of cdc in global measles mortality reduction
        Since fiscal year 2001, Congress has provided funding to protect
    children and their families from the threat of measles and rubella in
    developing countries. Funding for measles and rubella globally has
    remained level since fiscal year 2010, at the $50 million level the
    American Red Cross and United Nations Foundation recommend. This
    support has assisted 90 countries around the world and has contributed
    to saving the lives of 21.1 million children.
        In 2018, the number of measles cases increased 167 percent globally
    compared to 2016. Some regions were harder hit than others: Africa
    alone saw an increase of 246 percent. The most affected countries--the
    countries with the highest incidence rate of the disease--were
    Democratic Republic of the Congo (DRC), Liberia, Madagascar, Somalia
    and Ukraine. These five countries accounted for almost half of all
    measles cases worldwide.
        In 2018 the support of the Measles & Rubella Initiative in 37
    countries meant that nearly 350 million children were vaccinated during
    45 supplemental immunization activities. For this support, we extend
    our deep appreciation to Congress. This support permitted the provision
    of technical support to Ministries of Health that specifically
    included: (1) planning, monitoring, and evaluating large-scale measles
    vaccination campaigns; (2) conducting epidemiological investigations
    and laboratory surveillance of measles outbreaks; (3) CDC's Global
    Measles Reference Laboratory to serve as the leading worldwide
    reference laboratory for measles and rubella. The reference laboratory
    provides specimen confirmation and testing as well as training for
    country and regional labs; and (4) conducting operations research to
    guide cost-effective and high-quality measles control programs.
        In addition, CDC epidemiologists and public health specialists have
    worked closely with the WHO, UNICEF, the United Nations Foundation, and
    the American Red Cross to strengthen measles and rubella control
    programs at global and regional levels and will continue to work with
    these and other partners in implementing and strengthening rubella
    control programs. There is no doubt that CDC's financial and technical
    support--made possible by the funds appropriated by Congress--were
    essential in helping achieve the sharp reduction in measles deaths in
    just fifteen years.
        The American Red Cross and United Nations Foundation would like to
    acknowledge the leadership and work provided by CDC and recognize that
    CDC brings much more to the table than just financial resources. The
    Measles & Rubella Initiative is fortunate to have a partner that
    provides critical personnel and technical support for vaccination
    campaigns and in response to disease outbreaks. CDC personnel have
    routinely demonstrated their ability to effectively coordinate and plan
    with international organizations and provide solutions to complex
    problems that help critical work get done faster and more efficiently.
        Since fiscal year 2010, the CDC's measles and rubella elimination
    program has been funded at approximately $50 million. In fiscal year
    2021, the American Red Cross and United Nations Foundation respectfully
    requests the continuation of level funding of $50 million. This
    investment will allow CDC to maintain measles and rubella control and
    elimination activities, safeguard the progress made over the last
    decade and protect Americans by preventing measles cases and deaths in
    the United States. The overall CDC Global Immunization Program, through
    which the Measles & Rubella Initiative is funded, has been highly
    successful and we support full funding for the overall account. All the
    programs funded through the Global Immunization Program line help to
    build stronger health systems. We respectfully request $50 million for
    CDC measles elimination activities, as part of level funding of $226
    million for the entire Global Immunization account in fiscal year 2021.
        Thank you for the opportunity to submit testimony, and for your
    continued commitment to ending preventable death and disability from
    measles and rubella.

        [This statement was submitted by Koby J. Langley, Senior Vice
    President,
    International Services and Service to the Armed Forces, American
    National Red Cross, and Peter Yeo, Senior Vice President, United
    Nations Foundation.]
                                     ______

            Prepared Statement of the American Physiological Society
        The American Physiological Society (APS) thanks the subcommittee
    for its ongoing support of the National Institutes of Health (NIH). The
    $3 billion funding boost you provided in fiscal year 2020, following on
    the increases you provided between fiscal years 2016 2019, have put the
    NIH on a path toward sustainable budget growth. These much-needed
    increases will help NIH address critical health problems and emerging
    challenges through cutting-edge research. The APS urges you to sustain
    this vital effort by providing the NIH budget with at least $44.7
    billion in fiscal year 2021.
        Breakthroughs in basic and translational research are the
    foundation for new drugs and therapies that help patients, fuel our
    economy, and provide jobs. Federal investment in research is essential
    because the NIH is the primary funding source for discovery research
    through its competitive grants program. We look to the private sector
    to develop new treatments, but the private sector relies upon this
    federally-funded research to identify where to find the next break-
    through . This system of public-private partnership has been critical
    to U.S. leadership in the biomedical sciences. A recent article in the
    Proceedings of the National Academy of Sciences showed that all of the
    210 new molecular entities approved by the Food and Drug Administration
    between 2010 and 2016 were associated with NIH-supported research.
    Importantly, 84 of those new drugs were first-in-class, meaning they
    work through a novel mechanism of action or target.\1\
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        Federal research dollars also have a significant impact at the
    local level: Approximately 83 percent of the NIH budget is awarded to
    some 30,000 researchers who work in institutions throughout the
    country. They in turn use these grant funds to train students, pay
    research and administrative staff, purchase supplies and equipment, and
    cover other costs associated with their research. According to an
    updated 2020 report, NIH research funding in fiscal year 2019 supported
    more than 475,000 jobs nationwide, generating over $81 billion in total
    economic activity nationwide.\2\
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        The increases Congress has provided NIH over the last 5 years are
    helping to correct the devastating effects of sequestration and several
    years of budgets that declined in real terms due to inflation. To keep
    the agency on the right path forward, we urge you to continue providing
    meaningful and predictable annual budget increases that will keep up
    with the rate of inflation and take full advantage of the incredible
    opportunities for discovery that are before us.
        As specified in the 21st Century Cures Act, NIH continues to pursue
    a number of important initiatives including the Cancer Moonshot, the
    All of Us program (formerly the precision medicine initiative), and the
    Brain Research through Advancing Innovative Neurotechnologies (BRAIN)
    Initiative. These programs focus resources on specific areas of
    scientific opportunity that are ripe for innovation, but it is
    important to bear in mind that these projects build upon decades of
    basic research. If we are to advance our knowledge and lay the
    groundwork for similar opportunities for innovation in the future, NIH
    must continue to invest in creative investigator-initiated research.
        Over the past several decades, NIH has used a merit-based peer
    review system to identify and fund the best research proposals. To
    date, NIH has supported the work of 160 Nobel Laureates, including the
    2019 winners of the Economic Sciences and Physiology or Medicine
    prizes. Thanks to NIH research, Americans can expect to live longer and
    healthier lives. NIH also plays an important role in training the next
    generation of scientists, supporting trainees through individual
    fellowships and institutional grants as they complete their graduate
    degrees and seek the post-doctoral training necessary to pursue
    successful independent research careers.
        Today significant challenges loom before us: the growing threat to
    public health posed by the novel coronavirus outbreak requires a
    coordinated government response with a robust investment in research to
    advance understanding of the virus, the disease it causes and
    strategies to treat and prevent infection. NIH acted quickly when
    COVID-19 emerged as a problem in China and already has in place efforts
    to develop and test a vaccine and medications to treat the disease.\3\
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        In addition to the urgent threat posed by the novel coronavirus and
    other new and emerging diseases, the opioid epidemic continues to
    represent a national public health crisis. An aging population will
    bring an increase in diseases that contribute to death and disability
    such as heart disease, diabetes, kidney disease, arthritis, and cancer.
    If we are to continue to advance new and innovative ways to address
    these and other challenges on the horizon-including developing the
    workforce necessary to do so-the NIH will need stable and predictable
    funding increases in future years.
        The APS joins the Federation of American Societies for Experimental
    Biology (FASEB) in urging that NIH be provided with no less than $44.7
    billion in fiscal year 2021. This represents a $3 billion increase over
    fiscal year 2020.
                        research with nonhuman primates
        We would also like to draw to your attention the importance of
    encouraging researchers to work with the most appropriate research
    models for the diseases they are studying. We appreciate the language
    you included in Division A of the Managers' Amendment to the fiscal
    year 2020 Labor-HHS-Education appropriations conference report noting
    the importance of research with nonhuman primates while also urging NIH
    to seek alternatives that can reduce and replace them. Some comments on
    this are in order.
        Once researchers who are studying nonhuman primates have answered
    certain questions about a disease or biological process, they can look
    for alternative research models. These alternatives need to provide an
    accurate representation of what is being studied but require either
    fewer animals, a different species, or a non-animal alternative. As a
    matter of both law and ethics, scientists must do their best to ensure
    that research minimizes the pain or distress animals experience.
    Reducing pain and distress often also has the added benefit of reducing
    the numbers of animals needed to get scientifically valid results. The
    number of nonhuman primates needed may also decrease when parts of the
    question can be answered by studying a different animal species or
    using technologies such as computer simulations or organs-on-a-chip.
        The biggest challenge in biomedical research is that there are
    still so many unknowns. When researchers try to understand a complex
    biological process or a new pathogen such as the coronavirus
    responsible for COVID-19, their priority is to find the best research
    model as quickly as possible. The optimal choice is an animal whose
    anatomy, physiology, immune system, etc. closely resembles that of
    humans. For infectious diseases, complex neurological disorders and a
    host of other research challenges mandated by Congress, this often
    means a nonhuman primate species such as macaques, squirrel monkeys or
    marmosets. Recognizing this, NIH has stated that more nonhuman primates
    will be needed in the coming years.
        Nonhuman primates are expected to play an important role in finding
    treatments and cures for COVID-19 because of how closely their immune
    systems resemble that of humans. In order to develop a vaccine,
    scientists must first determine how the virus invades cells and then
    find ways to prevent that from happening. While a strain of genetically
    modified mice developed during the 2003 outbreak of Severe Acute
    Respiratory Syndrome (SARS) may be useful, before such a vaccine can be
    given to people, it must be tested in appropriate animal models to
    assess its safety and effectiveness. In addition, the only treatment we
    can currently offer to people who have COVID-19 is supportive care to
    help their bodies fight the disease. Therefore, researchers also need
    to find animal species that develop clinical symptoms of disease.
    Nonhuman primates are expected to feature prominently in this research.
        The APS is a nonprofit devoted to fostering education, scientific
    research and dissemination of information in the physiological
    sciences. The Society was founded in 1887 with 28 members and now has
    over 8,000 members, most of whom hold doctoral degrees in physiology,
    medicine and/or other health professions.

        [This statement was submitted by Dennis Brown, Ph.D., Chief Science
    Officer, American Physiological Society.]
                                     ______

          Prepared Statement of the American Psychological Association
        APA is the largest scientific and professional organization
    representing psychology in the U.S., numbering over 121,000
    researchers, educators, clinicians, consultants and students. Many
    programs in the Labor-HHS-Education Appropriations bill strengthen the
    public health workforce and support research, education and access to
    needed services for the diverse populations served by psychologists.
    Given the challenges of responding to the COVID-19 pandemic, it is
    clear that the U.S. healthcare system and public health infrastructure,
    from bench to bedside, to community, must be strengthened, access to
    health and mental health services enhanced, and support for data-
    informed approaches to education and public welfare at all levels be
    made priorities.
        Research Funding: To increase knowledge to advance health and
    education, APA supports investments in the Institute of Education
    Sciences (IES), National Institutes of Health (NIH), and Centers for
    Disease Control and Prevention (CDC).
        IES.--APA supports $670 million for IES, an independent and
    nonpartisan statistics, research, and evaluation division of the
    Department of Education. This would restore the nearly 10 percent loss
    in research funding power since fiscal year 2011. IES supports and
    disseminates rigorous scientific evidence on which to base education
    policy and practice and conducts rigorous analysis of educational
    programs and initiatives, as well as innovative research into, many
    aspects of teaching and learning.
        NIH (NIDA): Opioid Initiative.--Approximately 174 people die each
    day in the U.S. from drug overdose (over 100 from opioids), making it
    one of the most common causes of non-disease-related deaths for
    adolescents and young adults. To combat this crisis, APA supports at
    least $250 million for research related to preventing and treating
    opioid misuse and addiction. With additional funding for NIDA targeted
    at addressing this epidemic, the following areas should be among those
    targeted: studies to create a comprehensive care model in communities
    to prevent opioid misuse, expand treatment capacity, enhance access to
    overdose reversal medications, and enhance prescriber practice; and
    interventions in justice system settings to expand the uptake of
    medication-assisted treatment and methods such as non-pharmacological
    pain management to scale up these interventions for population-based
    impact.
        NIH (NIDA): Healthy Brain and Child Development Study.--It is not
    currently known how infant and childhood development is affected by
    early exposure to opioids and COVID-19. The HBCD Study will establish a
    large cohort of pregnant women from regions of the country
    significantly affected by the opioid crisis and follow them and their
    children for at least 10 years. This research will help understand
    normative childhood brain development as well as the long-term impact
    of pre- and postnatal opioid and other drug and adverse environmental
    exposures including COVID-19. This knowledge will be critical to help
    predict and prevent some of the known impacts of pre- and postnatal
    exposure to certain drugs or adverse environments, including risk and
    resilience for future substance use, mental disorders, and other
    behavioral and developmental problems as well as the unknown effects of
    COVID-19 exposure. APA supports the $33.5 million requested to initiate
    Phase II of HBCD.
        NIH Office of the Director: Office of Behavioral and Social
    Sciences Research (OBSSR).--OBSSR coordinates and promotes basic,
    clinical, and translational research in the behavioral and social
    sciences to support the NIH mission. Partnering with other Institutes
    and Centers, OBSSR co-funds highly rated grants that the ICs cannot
    fund alone. The Office also coordinates NIH's new, high-priority
    program on gun violence prevention research. APA asks the Committee to
    direct NIH to provide an increase of $22.5 million to OBSSR. As seen in
    previous pandemics including HIV, in the absence of a vaccine the only
    data-informed path to prevention is via people's behavior. Behavioral
    and social science research findings have informed our current response
    to COVID-19, but there must be additional research in the pipeline to
    improve targeted response to future disasters and pandemics,
    particularly for underserved and minority populations who are at
    greater risk of morbidity and mortality. In the short term, a National
    Academies study will clarify the path ahead for NIH-supported research.
    Infrastructure improvements in the longer term will make possible
    additional tools to fight pandemics and other emergencies, and faster
    and more targeted responses. At least $1 million of this increase
    should go to OBSSR's base budget, given that the OBSSR budget has
    remained relatively flat during this recent period of growth to the
    overall NIH budget.
        NIH: OBSSR: National Academies Study.--Pandemics represent global
    health crises, which require large-scale behavior change to optimize
    pandemic response, and pose significant psychological, economic, and
    societal burdens that can be prepared for and ameliorated with an
    investment in scientific research. APA requests $1.5 million for the
    NIH Office of Behavioral and Social Sciences Research to enter into an
    agreement with the National Academies of Sciences, Engineering and
    Medicine to provide an evidence-based analysis of behavioral and social
    science research relevant to different dimensions of pandemic response.
    The analysis should include a review of research related to navigating
    threats, social and cultural factors including the heavier burdens on
    poor and marginalized populations, science communication, moral
    decisionmaking, governance and coping with stress and uncertainty. The
    Committee recommends that the results of the interdisciplinary evidence
    review be used to make recommendations for actions that can be
    immediately applied to optimize response to the current COVID-19
    pandemic, and also identify important gaps that would help guide future
    research infrastructure development and specific research projects
    aimed at preventing and mitigating future pandemics.
        NIH: OBSSR: Infrastructure Improvements.--APA asks for $20 million
    so that OBSSR may coordinate among partner NIH institutes and centers,
    including NIMH and NIMHD, for critical scientific infrastructure
    projects to advance collaboration and develop tools for the behavioral
    and social sciences which may include:
      --Creating a social science and health data hub/cohort to serve as a
            data enclave with APIs [application programming interface] to
            various data sets to facilitate data linkage.
      --Establishing one or more behavioral and social sciences research
            (BSSR) clinical trials networks to allow trials of behavioral
            interventions to be established quickly, and with more diverse
            populations.
        NIH and CDC: Gun Violence Prevention Research.--In fiscal year
    2021, APA supports $50 million in funding shared evenly between CDC and
    NIH to conduct research into firearm morbidity and mortality
    prevention.
        Workforce and Access to Healthcare: To strengthen the public health
    workforce and improve access to healthcare, APA supports enhanced
    budgets for targeted programs in the Health Resources and Services
    Administration (HRSA) and the Substance Abuse and Mental Health
    Services Administration (SAMHSA). The nation's mental and behavioral
    health workforce must be expanded to respond adequately to the opioid
    epidemic and healthcare needs of our increasingly diverse and aging
    population. Psychologists, as researchers and practitioners, are
    integral to a healthcare system in which more than half of U.S.
    mortality is linked to behavior, and where mental and behavioral
    disorders are a significant health concern.
        HRSA: GPE, BHWET and Geriatric Workforce Grants: HRSA projects a
    shortage of 14,300 psychologists by 2030 to address the growing needs
    for behavioral interventions, which will be exacerbated by a surge in
    COVID-19 related mental and behavioral health problems-including
    increases in anxiety, depression, and post-traumatic stress disorder.
    APA recommends $23 million for the interprofessional Graduate
    Psychology Education Program, to increase the number of health service
    psychologists trained to provide integrated services to high-need,
    underserved populations in rural and urban communities. In addition,
    APA recommends $120 million for the Behavioral Health Workforce
    Education and Training programs, including $69 million for the
    Behavioral Health Workforce Education and Training Grant Program
    (BHWET). To expand access to non-pharmacological pain management to
    improve pain care and reduce the incidence of opioid use disorders, APA
    recommends $10 million for a program for education and training in pain
    care, as authorized by the SUPPORT Act under Section 759 of the Public
    Health Service Act (42 U.S.C. 294i). As the number of Americans over
    age 65 will likely double between 2000 and 2030, APA further recommends
    $51 million for the Geriatric Workforce Enhancement Program and
    Geriatric Academic Career Awards to provide training for health
    professionals, faculty, family caregivers, and consumers in the unique
    needs of older adults.
        SAMHSA (Minority Fellowship Program).--Given the disproportionate
    impact of COVID-19 on minority populations, APA requests a $2.5 million
    increase to $16.7 million for the MFP. This increase helps support a
    diverse behavioral health workforce addressing substance use disorders
    and mental health issues impacting minority and underserved
    populations.
        To fill key gaps in affordability and access to education services:
    Given the heavy burden of student loan debt, APA supports added
    investments in grant programs for graduate study, including at least
    $35 million for the Graduate Assistance in Areas of National Need
    (GAANN) Program, where psychology has been recognized as a national
    need area. Additionally, APA urges the committee to direct the
    Department of Education to fully implement the nearly $800 million
    appropriated since 2018 for the Temporary Expanded Public Service Loan
    Forgiveness (TEPSLF) program. Only 1 percent of TEPSLF applications
    have been approved as of May 2019. Until the Department addresses
    concerns with the implementation and management of the PSLF, the TEPSLF
    program provides needed resources to support borrowers who have
    received incorrect information that has consequently jeopardized their
    eligibility for the program. To ensure that our students receive a
    well-rounded education, and access to mental health counseling and
    programs that foster safe and healthy schools, APA requests $1.6
    billion for the Student Support and Academic Enrichment (SSAE) block
    grant under Title IV-A. APA requests level funding for CRD data
    collection in the Department of Education's Office of Civil Rights for
    collecting data on exclusionary discipline by disability status and
    seclusion/restraint data.
        To make additional improvements in access to healthcare and the
    social safety net: APA urges $10 million for the Lifespan Respite Care
    Program under the Administration for Community Living. The Program
    increases the availability of quality respite for caregivers,
    regardless of age or disability.
        Indian Health Service.-- Increase funding for medical equipment by
    $33,706,000. Many IHS and tribal healthcare facilities are using
    outdated equipment. Updating equipment will allow for better mental
    health treatment.
        SAMHSA: Suicide Prevention.--APA also supports maintaining current
    funding for the Garrett Lee Smith Memorial Act (GLSMA) programs, which
    increase young adults' access to prevention, education, and outreach
    services to reduce suicide risk in states, tribes, and institutions of
    higher education: $35.4 million for the State and Tribal Youth Suicide
    Prevention Program; $6.5 million for the Campus Mental and Behavioral
    Health Program; and $8 million for the Suicide Prevention Resource
    Center, an increase of $1 million over the enacted level.
        APA supports the appropriation of an additional $35 million, for a
    total of $757.5 million, for the Community Mental Health Services Block
    Grant to fund a 5 percent set aside for all states to fund crisis care
    services. APA supports $1.7 billion for the Social Services Block
    Grant, to provide vital social services (e.g. protective services,
    special services to people with disabilities). To prevent child abuse
    and neglect, strengthen families, and reduce the need for foster care
    placement, APA supports increased funding for the Child Abuse
    Prevention and Treatment Act (CAPTA): $270 million for Title I and $270
    million for Title II, as well as $60 million to support safe care plans
    for infants with prenatal substance exposure and families impacted by
    substance use disorders. APA also requests $19 billion for the Child
    Care Development Fund and $11.87 billion for Head Start to expand
    access to safe, affordable childcare and learning opportunities for
    working families. At the CDC, APA supports $4 million for Adverse
    Childhood Experiences Prevention and $10 million for Child Sexual Abuse
    Prevention.
        HIV Programs: CDC Division of Adolescent and School Health
    (DASH).--APA urges the Committee to fund the CDC DASH at $100 million
    in fiscal year 2021, an increase of $66.9 million over fiscal year
    2020. APA also supports SAMHSA's Minority AIDS Initiative, providing
    for evidence-based, culturally appropriate, HIV/AIDS-related mental
    health and substance use disorder treatment services among vulnerable
    populations. We recommend $160 million to expand efforts to prevent
    domestic HIV transmission and to increase treatment options for those
    living with co-morbid conditions.
        Medicare Cuts.--APA is deeply concerned about the Centers for
    Medicare and Medicaid Services' (CMS) final Medicare Physician Fee
    Schedule rule for CY 2020, which included broad changes to incentivize
    the use of evaluation and management services (E/M) through increased
    payments. APA is deeply concerned about the significant payment cuts
    psychologists will receive as a result of the current requirement for
    budget neutrality. Psychologists are the core mental and behavioral
    health provider in Medicare, and beneficiaries will face significant
    access issues in the coming months. This issue is exacerbated by the
    COVID-19 crisis, as psychologists struggle to find ways to treat their
    patients through remote access and soon may be determining how to keep
    their practices viable financially. Therefore, APA urges Congress to
    waive the budget neutrality requirements stipulated in Section
    1848(c)(2) of the Social Security Act for the finalized E/M code
    proposal for a period of no less than 5 years. This much-needed action
    by Congress would provide a critical reprieve for a broad scope of
    healthcare providers facing substantial payment reductions in the
    coming months.

        [This statement was submitted by Katherine B. McGuire, Chief
    Advocacy Officer, American Psychological Association.]
                                     ______

          Prepared Statement of the American Public Health Association
        APHA is a diverse community of public health professionals that
    champions the health of all people and communities. We are pleased to
    submit our requests for fiscal year 2021 funding for the Centers for
    Disease Control and Prevention and the Health Resources and Services
    Administration. We urge a funding level of at least $8.3 billion for
    CDC's programs and least $8.8 billion for the Health Resources and
    Services Administration. These requests do not reflect any additional
    emergency resources that may be needed to address the immediate and
    ongoing efforts to combat the COVID-19 pandemic. CDC and HRSA programs
    are especially critical as the U.S. grapples with the COVID-19
    pandemic. Adequate funding for programs that promote public health and
    prevention, support surveillance of infectious disease and bolster
    America's public health workforce will be critical in facing the short-
    term and long-term health impacts of COVID-19.
        Centers for Disease Control and Prevention: CDC provides the
    foundation for our state and local public health departments,
    supporting a trained workforce, laboratory capacity and public health
    education communications systems. It is notable that more than 70
    percent of CDC's budget supports public health and prevention
    activities by state and local health organizations and agencies,
    national public health partners and academic institutions. We believe
    Congress should support CDC as an agency, not just its individual
    programs. Although we believe an even more significant increase is
    truly needed to address the nation's current health challenges, at a
    minimum, we urge a funding level of at least $8.3 billion for CDC's
    programs in fiscal year 2021. We are grateful for the important
    increases provided for CDC programs in fiscal year 2020 and urge
    Congress to build upon these investments to strengthen all of CDC's
    programs many of which remain woefully underfunded. We also urge your
    continued support for the Prevention and Public Health Fund which
    currently makes up approximately 11 percent of CDC's budget.
        CDC serves as the command center for the nation's public health
    defense system against emerging and reemerging infectious diseases.
    From aiding in the surveillance, detection and prevention of the COVID-
    19 in the U.S., to monitoring and investigating disease outbreaks in
    the U.S., to pandemic flu preparedness, to educating the public about
    the value and importance of vaccines, CDC is the nation's--and the
    world's--expert resource and response center, coordinating
    communications and action and serving as the laboratory reference
    center for identifying, testing and characterizing potential agents of
    biological, chemical and radiological terrorism, emerging infectious
    diseases and other public health emergencies. Programs like CDC's
    Public Health Emergency Preparedness Cooperative Agreement enables
    states, cities and territories respond to public health emergencies.
    CDC oversees immunization programs for children, adolescents and
    adults. Childhood immunizations provide one of the best returns on
    investment of any public health program. For every dollar spent on
    childhood vaccines to prevent thirteen diseases, more than $10 is saved
    in direct and indirect costs. Over the past 20 years, CDC estimates
    childhood immunizations have prevented 732,000 deaths and 322 million
    illnesses. Congress must provide funding to support efforts to
    strengthen emergency preparedness activities and to stop current
    vaccine-preventable disease outbreaks and prevent more from occurring.
        We thank Congress for providing CDC with dedicated funding for
    firearm morbidity and mortality prevention research in fiscal year 2020
    and we strongly urge you to maintain and increase this funding in
    fiscal year 2021 to $50 million for CDC and NIH. This funding will
    allow CDC to conduct research into important issues including the best
    ways to prevent unintended firearm injuries and fatalities among women
    and children; the most effective methods to prevent firearm-related
    suicides; and the measures that can best prevent the next shooting at a
    school or public place.
        CDC's National Center for Environmental Health works to control
    asthma, protect against threats associated with natural disasters and
    climate change, reduce and monitor exposure to lead and other
    environmental health hazards and ensure access to safe and clean water.
    We urge you to provide at least $243 million for NCEH in fiscal year
    2021, including a $5 million increase for CDC's Climate and Health
    program. Climate change is happening now and is threating our health in
    many ways including through the increased spread of vector-borne
    diseases, degraded air quality from ozone pollution and wildfire smoke,
    hotter temperatures and more extreme weather events. Increased funding
    will allow CDC to fund an additional 14 health departments to help them
    prepare for and respond to the health impacts of climate change in
    their communities. CDC will also be able to begin to evaluate the work
    of existing grantees to identify and share best practices with
    communities nationwide.
        Programs under the National Center for Chronic Disease Prevention
    and Health Promotion address heart disease, stroke, cancer, diabetes
    and tobacco use that are the leading causes of death and disability in
    the U.S. and are also among the most costly to our health system. CDC
    provides funding for state programs to prevent disease, conduct
    surveillance to collect data on disease prevalence, monitor
    intervention efforts and translate scientific findings into public
    health practice in our communities. We once again strongly oppose the
    administration's proposal to block grant and cut funding for many of
    these programs.
        Health Resources and Services Administration: HRSA is the primary
    Federal agency dedicated to improving health outcomes and achieving
    health equity. HRSA's 90-plus programs and more than 3,000 grantees
    support tens of millions of geographically isolated, economically or
    medically vulnerable people, in every U.S. state and territory, to
    achieve improved health outcomes by increasing access to quality
    healthcare and services; fostering a healthcare workforce able to
    address current and emerging needs; enhance population health and
    address health disparities through community partnerships; and promote
    transparency and accountability within the healthcare system.
        We are grateful for the increases provided for HRSA programs in
    fiscal year 2020, however HRSA's discretionary budget authority remains
    over 20 percent below the fiscal year 2010 level (adjusted for
    inflation). We recommend Congress build upon the important increases
    they provided for HRSA programs in fiscal year 2020 and provide at
    least $8.8 billion for HRSA's total discretionary budget authority in
    fiscal year 2021.
        HRSA programs and grantees are providing innovative and successful
    solutions to some of the nation's greatest healthcare challenges
    including the rise in maternal mortality, the severe shortage of health
    professionals, the high cost of healthcare and behavioral health issues
    related to substance use disorders--including opioid misuse. Additional
    funding will allow HRSA build upon these successes and pave the way for
    new achievements by supporting critical HRSA programs, including:
      --Primary Health Care that supports over 11,000 health center sites
            in medically underserved communities across the U.S., providing
            access to high-quality preventive and primary care to more than
            28 million people including over 8.4 million children and
            350,000 veterans.
      --Health Workforce supports the health workforce across the entire
            training continuum and offers scholarship and loan repayment
            programs to ensure a well-prepared, well-distributed and
            diverse workforce that is ready to meet the current and
            evolving healthcare needs of the nation.
      --Maternal and Child Health supports initiatives that promote optimal
            health, reduce infant mortality, minimize disparities, prevent
            chronic conditions and improve access to quality healthcare for
            vulnerable women, infants and children; and serves more than 76
            million people through the MCH block grant.
      --HIV/AIDS delivers a comprehensive and robust system of care to more
            than 550,000 individuals impacted by HIV/AIDS, improving health
            outcomes for people with HIV and reducing the chance of others
            becoming infected, and provides training for health
            professionals treating people with HIV/AIDS. HRSA's Ryan White
            HIV/AIDS Program effectively engages clients in comprehensive
            care and treatment, including increasing access to HIV
            medication, which has resulted in 87 percent of clients
            achieving viral suppression, compared to just 59 percent of all
            people living with HIV nationwide.
      --Family Planning Title X services ensure access to comprehensive
            family planning and related preventive health services to
            nearly 4 million people, thereby reducing unintended pregnancy
            rates, limiting transmission of sexually transmitted infections
            and increasing early detection of breast and cervical cancer.
      --Rural Health supports community and state-based solutions to
            improve efficiencies in delivering rural health services and
            expand access, including supporting activities that aim to
            increase access to opioid treatment in rural areas, leverage
            the use of health information technology and telehealth and
            advise on rural health policy issues.
        In closing, we emphasize that the public health system requires
    stronger financial investments at every stage. This funding makes up
    less than 1 percent of Federal spending. Cuts to public health and
    prevention programs will not balance our budget and will only lead to
    increased costs to our healthcare system. Investing in CDC and HRSA
    programs will enable us to meet the mounting health challenges we
    currently face and to become a healthier nation.

        [This statement was submitted by Georges C. Benjamin, MD, Executive
    Director, American Public Health Association.]
                                     ______

          Prepared Statement of the American Society for Microbiology
        The American Society for Microbiology (ASM) is one of the largest
    life science societies, composed of more than 30,000 scientists and
    health professionals. Our mission is to promote and advance the
    microbial sciences. ASM respectfully requests that Congress provide at
    least $44.7 billion for the National Institutes of Health (NIH) and at
    least $8.3 billion for the Centers for Disease Control and Prevention
    (CDC) in fiscal year 2021. Within the CDC budget, we call on Congress
    to provide $57 million for the Advanced Molecular Detection (AMD)
    program in the National Center for Emerging and Zoonotic Infectious
    Diseases. These requests do not take into account any additional
    emergency supplemental funding that will be necessary to support these
    agencies in the wake of the COVID-19 pandemic.
                         support in unprecedented times
        ASM is grateful for the recent bipartisan agreements that have led
    to significant supplemental appropriations for CDC, NIH and other key
    health and preparedness programs as our nation responds to the ongoing
    COVID-19 pandemic. It is no longer a question of if, but when, the next
    pandemic will hit. Knowing that this is not our first pandemic, nor
    will it be our last, Congress should prioritize continued long-term
    investments in public health and in research at CDC and NIH. Congress
    should also encourage collaboration with other Federal science agencies
    to build on the wealth of existing knowledge and to leverage existing
    supercomputing and laboratory resources as well as capacity for
    epidemiological modeling and surveillance.
        In addition to focusing on the urgent and more immediate needs of
    our public health agencies and infrastructure, ASM remains deeply
    concerned about the serious consequences of the current disruption to
    the broader research enterprise. As is the case in the overall economy,
    researchers, students, post-docs and lab personnel have had their work
    cut short. This has implications not only for the workforce--where
    hiring has been disrupted and employees furloughed--but also on the
    process of scientific discovery. Experiments will need to be restarted,
    animal colonies repopulated, and fieldwork rescheduled for an
    indeterminate later time. The longer the slowdown continues, the more
    serious the consequences will be, especially on the people who comprise
    the research workforce, including graduate students, postdocs,
    principal investigators, laboratory and technical support staff.
        While our nation's research capacity has demonstrated it can absorb
    shocks, the scale of this one is still growing and unprecedented in
    duration and impact. As such, it is vital that the Federal government
    take measures to increase support for the research enterprise. The need
    for basic research continues, and providing robust, sustained and
    predictable funding for the NIH is the only way we will seize the
    unparalleled scientific opportunities in microbial research that lie
    before us, and the only way we will be equipped to address the research
    and development demands that novel infectious disease pandemics such as
    COVID-19 place on our scientific enterprise.
    Maintaining a Strong Investment in Microbial Science Through the NIH
        We thank the United States Congress for its longstanding,
    bipartisan support for the NIH and for its commitment to basic,
    translational, and clinical microbial research funded through multiple
    Institutes and Centers, particularly through the National Institute of
    Allergy and Infectious Diseases (NIAID). We especially thank Senate
    Appropriations Subcommittee on Labor, Health and Human Services (HHS),
    Education Chairman Roy Blunt and Ranking Member Patty Murray for their
    unwavering support for the NIH and leadership over the past 5 years,
    during which they and their House counterparts have worked in a
    bipartisan manner to place the NIH budget back on path of meaningful
    growth above inflation. By increasing funding by more than 33 percent
    since fiscal year 2015, NIH has advanced discovery toward promising
    therapies and diagnostics, reenergized existing and aspiring scientists
    nationwide, and restored hope for patients and their families.
    NIH Funding has Transformed the Microbial Sciences
        We live in an extraordinary time of scientific opportunity in the
    field of microbial research, and NIH funding plays a unique and
    indispensable role in supporting the discovery and application of new
    knowledge to prevent, detect, and treat infectious diseases. Amidst a
    global pandemic, steady investment over several years in NIH allowed
    NIAID to rapidly scale up and initiate clinical trials, now underway at
    record speed, to develop a vaccine for the novel coronavirus (SARS-COV-
    2). The investment over time, coupled with emergency supplemental
    funding is funding also is facilitating the commencement of clinical
    trials to test antiviral drugs like Remdesivir and innovative
    approaches like human convalescent plasma (HCP) therapy on those who
    are infected with the virus in the hope that therapeutic options can be
    made available as soon as possible.
        In non-pandemic times, investments in microbial research at NIH
    have led to great strides in protecting and improving human health. In
    addition to preparing today's scientists to combat our current
    pandemic, past NIH projects have led to the following advances:
      --A young person diagnosed with Human Immunodeficiency Virus (HIV)
            today who receives treatment will have a near normal life
            expectancy. The AIDS death rate has dropped 80 percent from its
            peak in 1995.
      --Routine childhood vaccinations prevent millions of cases of
            illness. For children vaccinated in 2009, an estimated $82
            billion in costs will be saved and 20 million cases, including
            42,000 early deaths, will be prevented.
      --The first preventive vaccine and experimental treatments were
            recently deployed in Africa against the Ebola virus, marking a
            significant public health achievement. The Ebola virus, which
            ravaged West Africa in 2013 and continues to cost lives in the
            Democratic Republic of the Congo, has killed more than 10,000
            people and severely strained regional socioeconomic stability.
      --The Human Microbiome Program (HMP) has transformed our
            understanding of the human/microbiome ecosystem by mapping the
            normal bacteria that live in and on the healthy human body.
            Microbiome research at NIH now extends well beyond the HMP to
            include research at several NIH Institutes, further revealing
            how microbial community makeup can vary from person-to-person
            and may correlate with health and disease. With a better
            understanding of what a ``normal'' human microbiome looks like,
            researchers are now exploring how changes in the microbiome are
            associated with, or even cause, illnesses.
    Looking Ahead: Continued Progress Requires a Sustained Commitment to
            Funding
        Even in the face of the promise and progress highlighted above, we
    have seen the human and economic devastation that results when we are
    confronted with a pandemic caused by an emerging infectious disease
    such as SARS-COV-2. Novel diseases present incalculable health,
    economic and social challenges as we have witnessed over the past few
    months, but they also present opportunities for innovation and new
    developments. Seasonal flu continues to cost the
        U.S. billions annually in direct medical costs and lost
    productivity due to illness, not to mention thousands of Americans lose
    their lives to flu each year. Through sustained funding to NIAID,
    scientists continue the quest for a universal flu vaccine, which will
    dramatically reduce the toll the virus takes on the U.S. each year, as
    well as reduce the chances of pandemic flu. In the past year, the first
    in human trials of a universal flu vaccine candidate were launched at
    the NIH Clinical Center. In light of the continued threat posed by
    COVID-19, it is imperative that we continue our efforts to combat known
    seasonal threats to reduce the toll that the two pathogens circulating
    together could take on our population.
    CDC's Indispensable Role in Preventing and Controlling Infectious
            Disease
        The programs and activities supported by CDC are essential to
    protect the health of the American people. ASM appreciates the
    important increases that Congress provided for many CDC programs in
    fiscal year 2020. Today's challenges reinforce the need for a strong
    CDC and regular investments in our public health infrastructure. We
    urge Congress to recommit to robust support for the CDC in fiscal year
    2021, including funding for the Infectious Disease Rapid Response
    Reserve Fund and the Prevention and Public Health Fund. CDC aids in
    surveillance, detection and prevention of global and domestic outbreaks
    from novel Coronavirus, to Ebola, to the measles, to seasonal flu. CDC
    is the nation's expert resource and response center, coordinating
    communications and action, and serving as the laboratory reference
    center. We are seeing in real time during that COVID-19 pandemic how
    states, communities, and international partners rely on CDC for
    accurate information, direction, and resources to respond in a crisis.
        Three areas that ASM would like to highlight under CDC are: (1)
    advanced molecular detection technology; (2) antimicrobial resistance;
    and, (3) laboratory capacity.
      --The Advanced Molecular Detection (AMD) program brings cutting edge
            genomic sequencing technology to the front lines of public
            health by harnessing the power of next- generation sequencing
            and high performance computing with bioinformatics and
            epidemiology expertise to study pathogens. Due to increasing
            costs and demands but continued flat funding, the program's
            ability to support its mission is threatened. With additional
            funds, the AMD program can promote greater innovation, expand
            workforce development, and enter into productive partnerships
            with academic research institutions and state/local public
            health agencies. ASM requests $57 million in for AMD fiscal
            year 2021, in order for this program to fully achieve its
            potential.
      --Multiple programs support antimicrobial resistance, which is one of
            the most daunting health challenges we face today. ASM requests
            funding for the Antibiotic Resistance Solutions Initiative at
            $200 million, the National Healthcare Safety Network at $25
            million, and the Division of Global Health Protection at $275
            million will ensure that we have the resources across multiple
            programs to address this urgent public health challenge.
      --Support for laboratory capacity is paramount, and the Emerging and
            Zoonotic Infectious Disease labs are the world's reference
            labs. But maintaining labs costs more each year, from quality
            and safety initiatives, to the cost of shipments and supplies,
            to recruiting and retaining specialized and highly trained
            staff. ASM applauds the inclusion of additional funding of to
            $10 million in the President's fiscal year 2021 request for lab
            capacity at the CDC, we urge you to consider this additional
            funding as a floor for additional resources to this area.
        ASM looks forward to working with you to ensure that researchers
    and public health professionals have the resources they need to apply
    fundamental microbial science research to meet 21st Century challenges
    in public health promotion, the prevention, detection and treatment of
    infectious diseases, and the prevention of future outbreaks.

        [This statement was submitted by Allen Segal, Public Policy and
    Advocacy
    Director, American Society for Microbiology.]
                                     ______

            Prepared Statement of the American Society for Nutrition
        Dear Chairman Blunt and Ranking Member Murray:
        Thank you for the opportunity to provide testimony regarding fiscal
    year 2021 appropriations. The American Society for Nutrition (ASN)
    respectfully requests at least $44.7 billion dollars for the National
    Institutes of Health (NIH) and $189 million dollars for the Centers for
    Disease Control and Prevention/National Center for Health Statistics
    (CDC/NCHS) in fiscal year 2021. ASN is dedicated to bringing together
    the world's top researchers to advance our knowledge and application of
    nutrition, and has more than 7,000 members working throughout academia,
    clinical practice, government, and industry.
                         national institutes of health
        The NIH is the nation's premier sponsor of biomedical research and
    is the agency responsible for conducting and supporting 86 percent of
    federally funded basic and clinical nutrition research. Although
    nutrition and obesity research make up less than 8 percent of the NIH
    budget, some of the most promising nutrition-related research
    discoveries have been made possible by NIH support. NIH nutrition-
    related discoveries have impacted the way clinicians prevent and treat
    heart disease, cancer, diabetes and other chronic diseases. For
    example, from 2001 to 2011, the U.S. death rate from heart disease has
    fallen by about 39 percent and from stroke by about 35 percent.\1\
    However, the burden and risk factors remain high. With additional
    support for NIH, additional breakthroughs and discoveries to improve
    the health of all Americans will be made possible.
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        \1\ https://www.heart.org/idc/groups/ahamah-public/@wcm/@sop/@smd/
    documents/downloadable/ucm_470704.pdf.
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        Investment in biomedical research generates new knowledge, improved
    health, and leads to innovation and long-term economic growth. From
    fiscal year 2003 to 2015, the NIH lost 22 percent of its capacity to
    fund research due to budget cuts, sequestration, and inflationary
    losses. Such economic stagnation is disruptive to training, careers,
    long-range projects and ultimately to progress. Since fiscal year 2016,
    Congress has begun to restore the NIH budget but there is much work to
    be done; in real dollars, the NIH budget is still 16 percent below the
    fiscal year 2003 level. ASN recommends at least $44.7 billion dollars
    for NIH in fiscal year 2021 to support NIH nutrition-related research
    that will lead to important disease prevention and cures. A budget of
    $44.7 billion will allow NIH to continue its commitment to the Next
    Generation Researchers Initiative; provide $404 million already
    authorized through the 21st Century Cures Act for key research
    initiatives; and provide a 3 percent budget increase across NIH
    Institutes and Centers, allowing them to bolster research areas in need
    of resources. NIH needs sustainable and predictable budget growth to
    fulfill the full potential of biomedical research, including nutrition
    research, that is aimed at improving the health and wellbeing of all
    Americans, as well as global populations.
          centers for disease control and prevention/national center
                             for health statistics
        The National Center for Health Statistics, housed within the
    Centers for Disease Control and Prevention, is the nation's principal
    health statistics agency. ASN recommends a fiscal year 2021 funding
    level of $189 million dollars for NCHS to help ensure uninterrupted
    collection of vital health and nutrition statistics and help cover the
    costs needed for technology and information security maintenance and
    upgrades that are necessary to replace aging survey infrastructure. The
    U.S. is a leader in this area and a decade of flat funding has taken a
    significant toll on NCHS's ability to keep pace.
        The NCHS provides critical data on all aspects of our healthcare
    system, and it is responsible for monitoring the nation's health and
    nutrition status through surveys such as the National Health and
    Nutrition Examination Survey (NHANES), that serve as a gold standard
    for data collection around the world. Nutrition and health data,
    largely collected through NHANES, are essential for tracking the
    nutrition, health and well-being of the American population, and are
    especially important for observing nutritional and health trends in our
    nation's children. This is an invaluable source of data that has been
    and can continue to be used to address major health issues as they
    arise.
        Nutrition monitoring conducted by the Department of Health and
    Human Services in partnership with the U.S. Department of Agriculture/
    Agricultural Research Service is a unique and critically important
    surveillance function in which dietary intake, nutritional status, and
    health status are evaluated in a rigorous and standardized manner.
    Nutrition monitoring is an inherently governmental function and
    findings are essential for multiple government agencies, as well as the
    public and private sector. Nutrition monitoring is essential to track
    what Americans are eating, inform nutrition and dietary guidance
    policy, evaluate the effectiveness and efficiency of nutrition
    assistance programs, and study nutrition-related disease outcomes.
    Funds are needed to ensure the continuation of this critical
    surveillance of the nation's nutritional status and the many benefits
    it provides.
        Through learning both what Americans eat and how their diets
    directly affect their health, the NCHS is able to monitor the
    prevalence of obesity and other chronic diseases in the U.S. and track
    the performance of preventive interventions, as well as assess
    'nutrients of concern' such as calcium, iron, folate, iodine, vitamin
    D, and other micronutrients which are consumed in inadequate amounts by
    many subsets of our population. Data such as these are critical to
    guide policy development in health and nutrition, including food
    safety, food labeling, food assistance, military rations and dietary
    guidance. For example, NHANES data are used to determine funding levels
    for programs such as the Supplemental Nutrition Assistance Program
    (SNAP) and the Women, Infants, and Children (WIC) clinics, which
    provide nourishment to low-income women and children.
        Thank you for the opportunity to submit testimony regarding fiscal
    year 2021 appropriations for the National Institutes of Health and the
    CDC/National Center for Health Statistics. Please contact John E.
    Courtney, Ph.D., ASN Executive Officer, at 9211 Corporate Boulevard,
    Suite 300, Rockville, Maryland 20850, jcourtney@nutrition.org, if ASN
    may provide further assistance.
        Sincerely.

        [This statement was submitted by Richard Mattes, M.P.H., Ph.D., RD
    2019-2020, President, American Society for Nutrition.]
                                     ______

            Prepared Statement of the American Society of Hematology
        The American Society of Hematology (ASH) represents more than
    18,000 clinicians and scientists committed to the study and treatment
    of blood and blood-related diseases. These diseases encompass malignant
    disorders such as leukemia, lymphoma, and myeloma; life-threatening
    conditions, including thrombosis and bleeding disorders; and congenital
    diseases such as sickle cell disease, thalassemia, and hemophilia.
    Hematologists have been pioneers in the fields of bone marrow
    transplantation, stem cell biology and regenerative medicine, and gene
    and immunotherapy.
            fiscal year 2021 request: national institutes of health
        American biomedical research has led to new medical treatments,
    saved innumerable lives, reduced human suffering, and spawned entire
    new industries, none of which would have been possible without support
    from the National Institutes of Health (NIH). Hematology research,
    funded by many institutes at the NIH, including the National Heart,
    Lung and Blood Institute (NHLBI), the National Cancer Institute (NCI),
    the National Institute of Diabetes, Digestive and Kidney Diseases
    (NIDDK), the National Institute on Aging (NIA), and the National
    Institute of Allergy and Infectious Diseases (NIAID), has been an
    important component of this investment in the nation's health.
        With the advances gained through an increasingly sophisticated
    understanding of how the blood system functions, hematologists have
    changed the face of medicine through their dedication to improving the
    lives of patients. NIH-funded research has led to tremendous advances
    in treatments for children and adults with blood cancers and other
    hematologic diseases and disorders. Hematology advances also help
    patients with other types of cancers, heart disease, and stroke. Basic
    research on blood has aided physicians who treat patients with heart
    disease, strokes, end-stage renal disease, cancer, and AIDS. Additional
    Federal investment in research will form the basis for continued
    scientific progress in hematology and other fields of medicine for
    years to come.
        ASH thanks Congress for the robust bipartisan support that has
    resulted in several consecutive years of welcome and much needed
    funding increases for NIH, including the more than $2 billion increase
    that Congress provided in fiscal year 2020. For fiscal year 2021, ASH
    strongly supports the Ad Hoc Group for Medical Research recommendation
    that NIH receive $44.7 billion. This funding level, supported by more
    than 330 other stakeholder organizations, would allow for meaningful
    growth above inflation in the base budget that would expand NIH's
    capacity to support promising science in all disciplines. It also would
    ensure that funding from the Innovation Account established in the 21st
    Century Cures Act would supplement the agency's base budget, as
    intended, through dedicated funding for specific programs.
        While we are grateful for Congress's ongoing commitment to NIH as a
    top national priority through the regular appropriations process, we
    also urge the inclusion of additional emergency supplemental
    investments in the NIH as Congress considers future legislation to
    promote the nation's physical, health, and economic resilience to the
    current COVID-19 pandemic and future pandemics. The extraordinary
    research currently underway to identify and develop potential COVID-19
    vaccines, antivirals, and other medical countermeasures is all built on
    the scientific foundation enabled by the Federal investment in NIH.
    Additionally, the emergency supplemental resources provided to NIH in
    the recently enacted COVID-19 packages are playing an important role in
    identifying therapies and vaccines, as well as improving testing and
    diagnostic methods.
        Further supplementary funding to NIH will be necessary to help
    preserve the momentum of the nation's investment in biomedical research
    and aid in ramping up labs to their prior research capacities.
    Researchers in every state suspended many laboratory activities for
    their own personal safety and to comply with physical distancing
    guidelines as a result of the COVID-19 pandemic. The closure of many
    research facilities is impacting trainees, technicians, early-stage
    investigators, and established investigators alike, preventing the
    research workforce from maintaining momentum toward better prevention,
    treatments, diagnostics, and cures for diseases such as blood cancers,
    sickle cell disease, and other hematologic diseases and conditions.
        Substantial costs have been incurred for the shut-down and there
    will be significant additional costs for the eventual ramp-up of
    research activities. For example, labs will need to replace personal
    protective equipment that they have donated to support the critical
    work of first responders and healthcare providers and will also need to
    reestablish experimental models. This includes the need to rebuild
    animal colonies, breed mice and other animal models, and reestablish
    cell lines used for experiments that were destroyed during the
    preparation to close labs. This is both costly and time consuming as
    labs will need to replenish these colonies and retest to ensure
    reproducibility of previous research findings prior to proceeding this
    any new experimental work. Additionally, core facilities, such as those
    that provide DNA sequencing and flow cytometry services, support cross-
    disciplinary research efforts across federally funded research labs.
    These facilities are also closed or functioning below capacity to
    ensure readiness for any ongoing COVID-19 research efforts, and they
    also need support.
        Many new clinical questions are emerging daily from this COVID-19
    pandemic. Indeed, as the infections continue, new disease
    manifestations are developing including severe hematopoietic conditions
    that have turned COVID-19 into not only a pulmonary disease, but a
    blood disease as well. Recent emerging outcomes include coagulation and
    severe inflammation, or the cytokine storm, that is seen in adults and
    children alike and results in severe complications and even death in
    some affected. In response to these health issues, the Society has
    developed a ``COVID-19 Research Agenda in Hematology.'' This document
    explores the key underlying research questions that, to date, lack
    scientific evidence to inform clinical practice and treatment efforts.
    The Society has deemed these questions to be of utmost importance to
    address in order to best guide physicians on the front lines when
    treating critically ill patients and attempting to save lives. It is
    imperative that answers to these questions are provided soon to help
    successfully defeat this virus and save as many lives as possible.
        Finally, the Society is concerned about possible new policies that
    would place the intellectual property of peer reviewed scientific and
    medical research articles, published in professional journals, in
    jeopardy. Of particular concern is a potential proposal by the
    Administration to eliminate the current 12-month embargo to make
    federally funded scientific research published in journals freely
    available worldwide. If enacted, such a proposal could significantly
    threaten scientific rigor, discovery, and innovation. The Society urges
    the Subcommittee to re-affirm its support for the 2013 Holdren Memo,
    which ensures public access to peer-reviewed articles no later than 12
    months after the official date of publication. The current 12-month
    embargo period allows for robust peer review and curation systems, and
    copyright and intellectual property protection of American science.
      fiscal year 2021 request: centers for disease control and prevention
        The Society also recognizes the important role of the Centers for
    Disease Control and Prevention (CDC) in preventing and controlling
    clotting, bleeding, and other hematologic disorders. This is especially
    important for improving the care and treatment of individuals with
    sickle cell disease (SCD).
        Sickle cell disease is an inherited, lifelong disorder affecting
    approximately 100,000 Americans. Individuals with the disease produce
    abnormal hemoglobin which results in their red blood cells becoming
    rigid and sickle-shaped, causing them to get stuck in blood vessels and
    block blood and oxygen flow to the body, which can cause severe pain,
    stroke, organ damage, and in some cases premature death. Though new
    approaches to managing SCD have led to improvements in diagnosis and
    supportive care, many people living with the disease are unable to
    access quality care and are limited by a lack of effective treatment
    options.
        Dedicated Federal funding is needed for CDC's SCD Data Collection
    Program to allow the program to be expanded to include additional
    states with the goal of covering the majority of the U.S. SCD
    population over the next 5 years. The Sickle Cell Disease and Other
    Heritable Blood Disorders Research, Surveillance, Prevention, and
    Treatment Act of 2018 (Public Law 115-327) authorizes CDC to award SCD
    data collection grants to states, academic institutions, and non-profit
    organizations to gather information on the prevalence of SCD and health
    outcomes, complications, and treatment that people with SCD experience.
    For fiscal year 2021, the Society urges the Subcommittee to provide at
    least $5 million for SCD data collection within the CDC's National
    Center for Birth Defects and Developmental Disabilities, Division of
    Blood Disorders (NCBDDD).
        The current program was established with funding from the CDC
    Foundation. It is a population-based surveillance system, which
    collects and analyzes longitudinal data about people living in the U.S.
    with SCD. Due to limited funding, implementation of the program has
    occurred only in two states over the past few years--California and
    Georgia (approximately 10 percent of the U.S. SCD population). Data is
    being collected from multiple sources (newborn screening programs,
    Medicaid, hospital discharge data, emergency department data, vital
    records, and clinical data) in order to create individual healthcare
    utilizations profiles, which is unique because it captures all
    individuals with SCD regardless of insurance status. The program is
    also valuable because it can follow individuals over time across
    healthcare systems and create individual profiles of how they accessed
    healthcare and their outcomes.
        In September 2019, CDC announced the transfer of nearly $1.2
    million in fiscal year 2019 funding to help seven additional states
    (Alabama, Indiana, Michigan, Minnesota, North Carolina, Tennessee, and
    Virginia) develop systems to collect data on the issues faced by people
    living with sickle cell disease. This bridge funding is an important
    step toward improving and expanding the CDC's SCD data collection
    efforts; however, it is only limited to 1 year. These states have
    already made significant progress in building the infrastructure needed
    to implement the program and it is important to continue to build on
    this investment. Dedicated funding at $5 million for NCBDDD to carry
    out the SCD Data Collection Program in fiscal year 2021 will assure
    this.
        Additionally, ASH supports the public health community's request
    for at least $8.3 billion in funding for the CDC in fiscal year 2021.
    ASH also urges continued support of the Public Health and Prevention
    Fund which has supported many critical projects at CDC, including
    investments in healthcare-associated infections. Currently the fund
    comprises more than 11 percent of CDC's budget. ASH is concerned about
    the repeated efforts to eliminate this fund because of the budgetary
    pressure this would place on other programs within the Subcommittee's
    jurisdiction.
     fiscal year 2021 request: health resources and services administration
        Finally, ASH seeks continued funding of the SCD Demonstration
    Program within the Health Resources and Services Administration (HRSA)
    and fiscal year 2021 level of $5.2 million. This program supports five
    regional grantees, whose efforts focus on enhancing access to
    comprehensive, state of the art SCD care for patients living with the
    disease by providing educational programs and technical assistance on
    advances in SCD treatments to a broad array of providers and assuring
    coordination of care with hematologists, who specialize in the disease.
        Thank you again for the opportunity to submit testimony. Please
    contact ASH Senior Manager, Legislative Advocacy, Tracy Roades at
    troades@hematology.org, if you have any questions or need further
    information concerning hematology research or ASH's fiscal year 2021
    requests.
                                     ______

          Prepared Statement of the American Society of Human Genetics
        The American Society of Human Genetics (ASHG) thanks the
    Subcommittee for its continued strong support and leadership in funding
    the National Institutes of Health (NIH). The $2.6 billion increase
    provided for fiscal year 2020 reinforces our nation's commitment to the
    health and well-being of all Americans by investing in biomedical
    research and scientific innovation. ASHG urges the Subcommittee to
    appropriate $44.7 billion for NIH in fiscal year 2021.
        My name is Tony Wynshaw-Boris. I am a professor and chair of the
    Department of Genetics and Genome Sciences at Case Western Reserve
    University. My laboratory studies the biology, specifically the
    genetics, of the development and function of the brain.
                  a breakthrough year in genetics and genomics
        Seeking to understand the human body and diseases in service of the
    public is an underlying imperative of genetics and genomics research. A
    recent poll conducted by ASHG and Research!America indicated that 74
    percent of Americans support increased Federal funding for genetics
    research.\1\ Indeed, thanks to sustained Federal investment in basic
    and translational research, we are now seeing the transformative impact
    of genetics research with greater insight about diseases, innovative
    diagnostic technology and new treatments.
    ---------------------------------------------------------------------------
        \1\ https://www.ashg.org/discover-genetics/public-views-of-
    genetics-survey/.
    ---------------------------------------------------------------------------
        My laboratory studies the pathophysiological mechanisms of human
    neurogenetic disorders, using animal models and more recently inducible
    pluripotent stem cell (iPSC) models. These studies have started with an
    understanding of brain development with a focus on how normal
    development is affected in these disorders, and in some cases, this has
    provided targets that could lead to novel therapies. My research
    underscores the importance of basic research and its application to
    human diseases.
        Building on scientific knowledge and an enhanced understanding of
    disease gleaned from years of federally funded research, new treatments
    are now available for patients suffering from devasting diseases who
    previously lacked options. In the past year alone, the FDA has approved
    several new drugs and gene therapies for rare diseases: Duchenne
    muscular dystrophy (DMD),\2\ spinal muscular atrophy (SMA),\3\ sickle
    cell disease,\4\ and a drug that targets the most common mutation (90
    percent) causing cystic fibrosis.\5\ The FDA also approved the first-
    ever personalized therapy, Milasen, for a fatal neurodegenerative
    disease: supported in part by NIH funding, the research and clinical
    team took a remarkably short 10 months to go from identifying the
    genetic defect to designing the drug.\6\
    ---------------------------------------------------------------------------
        \2\ https://www.fda.gov/news-events/press-announcements/fda-grants-
    accelerated-approval-first-targeted-treatment-rare-duchenne-muscular-
    dystrophy-mutation.
        \3\ https://www.fda.gov/news-events/press-announcements/fda-
    approves-innovative-gene-therapy-treat-pediatric-patients-spinal-
    muscular-atrophy-rare-disease.
        \4\ https://www.fda.gov/news-events/press-announcements/fda-
    approves-novel-treatment-target-abnormality-sickle-cell-disease.
        \5\ https://directorsblog.nih.gov/2019/10/31/dare-to-dream-the-
    long-road-to-targeted-therapies-for-cystic-fibrosis/.
        \6\ Kim, J., et al. 2019. Patient-Customized Oligonucleotide
    Therapy for a Rare Genetic Disease. N.Engl.J.Med. 381:1644-1652;
    https://directorsblog.nih.gov/2019/10/23/one-little-girls-story-
    highlights-the-promise-of-precision-medicine/.
    ---------------------------------------------------------------------------
        In addition, there are numerous promising therapies currently
    undergoing clinical trials. This includes a gene therapy for X-linked
    severe combined immunodeficiency (SCID-X1), known as the ``bubble boy''
    disease. For children suffering from this disease, common infections
    can be life-threatening. However, infants enrolled in the study have
    functioning immune systems and are living normal lives as toddlers.\7\
    ---------------------------------------------------------------------------
        \7\ Mamcarz, E., et al. 2019. Lentiviral Gene Therapy Combined with
    Low-Dose Busulfan in Infants with SCID-X1. N.Engl.J.Med. 380:1525-34;
    https://www.nih.gov/news-events/news-releases/gene-therapy-restores-
    immunity-infants-rare-immunodeficiency-disease.
    ---------------------------------------------------------------------------
        Basic research on the human genome and biology is fundamental to
    this clinical progress. For example, the naturally occurring ``CRISPR-
    Cas9'' system was discovered through federally funded basic research
    investigating the immune systems of bacteria.\8\ Scientists are now
    harnessing it as a research and clinical tool to edit the human DNA
    code, and numerous clinical trials are underway studying its
    therapeutic utility for a variety of cancers, blood disorders, and
    congenital blindness.\9\ Creative new tools based on CRISPR-Cas9 are
    also being explored for cancer screening \10\ and rapid diagnostics for
    infectious diseases such as COVID-19 \11\.
    ---------------------------------------------------------------------------
        \8\ https://www.genome.gov/dna-day/15-ways/genome-editing.
        \9\ https://clinicaltrials.gov/.
        \10\ Gootenberg, JS., et al. 2017. Nucleic acid detection with
    CRISPR-Cas13a/C2c2. Science. 356:438-442.
        \11\ https://www.broadinstitute.org/files/publications/special/
    COVID-19%20detection%20
    (updated).pdf.
    ---------------------------------------------------------------------------
        Genetics-based research and technology is advancing knowledge
    across all areas of life science research. About 20 years ago, the
    National Human Genome Research Institute (NHGRI) was funding over 90
    percent of human genomics research at the NIH; today, NHGRI only
    accounts for about 15 percent, and nearly every NIH institute and
    center supports research on the human genome.\12\ This reflects the
    increased use of genetics and genomics approaches for investigating
    diseases suffered by millions of Americans, such as cancer,
    cardiovascular diseases, and mental health.
    ---------------------------------------------------------------------------
        \12\ https://www.genome.gov/sites/default/files/media/files/2020-
    02/NHGRIFY2021CJ.pdf.
    ---------------------------------------------------------------------------
        For example, the Pan-Cancer Project, a large-scale study aimed at
    understanding cancer that involved over a thousand researchers around
    the globe, sequenced and analyzed the complete genomes of 38 types of
    cancer. A significant new discovery from this study is that mutations
    that occur decades before diagnosis can contribute to the onset of
    cancer in humans.\13\
    ---------------------------------------------------------------------------
        \13\ https://directorsblog.nih.gov/tag/pan-cancer-analysis-of-
    whole-genomes-consortium/.
    ---------------------------------------------------------------------------
        Researchers are also exploring analytical approaches providing
    novel insights on how the human genome is connected with disease.
    Research groups are developing polygenic risk scores (PRS), a
    predictive value of a person's risk for disease based on multiple genes
    for a variety of complex diseases including cardiovascular disease,
    diabetes, Alzheimer's, autism, and many more.\14\ The potential of PRS
    in healthcare as an early intervention tool may help improve outcomes
    and tailor clinical care.
    ---------------------------------------------------------------------------
        \14\ https://www.genome.gov/Health/Genomics-and-Medicine/Polygenic-
    risk-scores.
    ---------------------------------------------------------------------------
        Genetics research also impacts other scientific disciplines and
    Federal agencies. For example, a collaboration between NIH and NASA-
    funded researchers published a landmark study last year, describing
    genetic, physiological and other changes resulting from spaceflight.
    The study provides a foundation for understanding how astronauts' body
    and health may be affected in space.\15\
    ---------------------------------------------------------------------------
        \15\ Garrett-Bakelman, FE., et al. 2019. The NASA Twins Study: A
    multidimensional analysis of a year-long human spaceflight. Science.
    364:eaau8650; https://directorsblog.nih.gov/2019/04/23/nasa-twins-
    study-reveals-health-effects-of-space-flight/.
    ---------------------------------------------------------------------------
                  nih-funded activities: return on investment
        Besides the immeasurable value of improving the quality of life and
    health of the public, NIH research funding can be quantified as a
    driver of economic activity. For fiscal year 2019, NIH funding
    supported over 475,000 jobs across the nation and stimulated about $81
    billion in economic activity. The economic gain in 29 states exceeded
    $500 million.\16\
    ---------------------------------------------------------------------------
        \16\ https://www.unitedformedicalresearch.org/wp-content/uploads/
    2019/04/NIHs-Role-in-Sustaining-the-US-Economy-FY19-FINAL-
    2.13.2020.pdf.
    ---------------------------------------------------------------------------
        An overwhelming majority of Americans believe more research is
    needed in human genetics and support increased Federal funding for
    research. To echo the public's need and sentiment, the Society's
    vision-people everywhere realize the benefits of human genetics and
    genomics research-is achievable with sustained and robust funding for
    the NIH. ASHG joins the Federation of American Societies for
    Experimental Biology (FASEB), and the Ad Hoc Group for Medical Research
    in recommending a $44.7 billion budget for NIH for fiscal year 2021.
        The American Society of Human Genetics (ASHG), founded in 1948, is
    the primary professional membership organization for human genetics
    specialists worldwide. The Society's nearly 8,000 members include
    researchers, academicians, clinicians, laboratory practice
    professionals, genetic counselors, nurses and others who have a special
    interest in the field of human genetics.

        [This statement was submitted by Anthony Wynshaw-Boris, MD, PhD,
    President, American Society of Human Genetics.]
                                     ______

       Prepared Statement of the American Society of Nephrology and the
                    American Society of Pediatric Nephrology
        On behalf of the 37 million children, adolescents, and adults
    living with kidney diseases in the United States, the American Society
    of Nephrology and the American Society of Pediatric Nephrology requests
    a $3 billion for NIH over fiscal year 2020 levels, including a robust
    funding increase for NIDDK that is at least proportional. In addition,
    we urge you to consider a Special Statutory Funding Program for Kidney
    Research at $150 million per year over 10 years, and $100 million in
    emergency supplemental funding to study the impact of COVID-19 and
    COVID-19 therapeutics and vaccines on the kidney and in people with
    kidney diseases.
        A January 2017 Government Accountability Office (GAO) report
    highlighted the pressing need for investment in kidney research; GAO
    found that the annual cost for care of the approximately 650,000
    patients in the Medicare End-Stage Renal Disease (ESRD) program
    exceeded the budget allocation for the entire NIH. While NIH's budget
    allocation has grown since that time, we still dedicate equivalent of
    approximately just 5 percent of the annual total cost of care for
    kidney failure to kidney research at the NIH.
        Since the GAO study was published, the number of patients with
    kidney diseases and associated costs to the taxpayer have also risen.
    There are now 720,000 Americans living with kidney failure, and
    Medicare spends $35 billion managing kidney failure and $116 billion
    managing kidney diseases, 15 percent of all Medicare spending. Greater
    investment in kidney research should be an urgent priority to deliver
    better outcomes for patients and bring greater value to the Medicare
    program.
        As the GAO highlighted, Congress made a commitment to treat all
    Americans with kidney failure through the Medicare End-Stage Renal
    Disease (ESRD) Program--the only health condition for which Medicare
    automatically provides coverage regardless of age. This unique
    commitment underscores the imperative for Congress to foster innovation
    and discovery in kidney care.
        Our organizations believe the Special Statutory Funding Program for
    Type 1 Diabetes Research provides an ideal model to foster
    breakthroughs in kidney therapies and cures. This Special Diabetes
    Program has generated remarkable progress for diabetes patients,
    including the development of the Artificial Pancreas. We urge your
    support for an additional $150 million per year over 10 years to
    establish a similar program NIDDK focused kidney research--a Special
    Statutory Funding Program for Kidney Research--supplementing regularly
    appropriated funds that the NIDDK receives.
        NIDDK funds the vast majority of Federal research in kidney
    diseases, and despite the immense gap between the Federal Government's
    expenditures on kidney care and its investment in kidney research,
    NIDDK-funded scientists have produced several major breakthroughs in
    the past several years that require further investment to stimulate
    therapeutic advancements. For example, geneticists focused on the
    kidney have made advances in understanding the genes that cause kidney
    failure, and other kidney scientists have developed an innovative
    method to determine if new drugs cause kidney injury before giving them
    to patients in clinical trials. NIDDK launched the Kidney Precision
    Medicine Project that will pinpoint targets for novel therapies--
    setting the stage for personalized medicine in kidney care. Additional,
    sustained funding is needed to accelerate these and other novel
    opportunities to improve the care of patients with kidney disease and
    bring better value to the Medicare ESRD program.
        Finally, people with kidney diseases are among the most vulnerable
    to infectious diseases and there is mounting evidence that COVID-19
    poses a unique risk: hospitalized COVID-19 patients with kidney
    diseases are two and half times more likely to die from the virus.\1\
    The risks posed by COVID-19 are especially salient among people with
    kidney failure receiving in-center dialysis or living with a kidney
    transplant.\2\ Sadly, some of the earliest COVID-19 deaths in the U.S.
    were among kidney patients.\3\ In addition, while it is commonly
    understood that COVID-19 causes damage to the lungs, increasing
    evidence suggests that the SARS-CoV-2 virus causes kidney injury in
    patients without pre-existing kidney disease. Anecdotal evidence from
    New York and China suggest that as many as 14-30 percent of intensive
    care unit patients with COVID-19 lose kidney function and require
    emergency kidney replacement therapy.\4\
    ---------------------------------------------------------------------------
        \1\ Achenbach, J. Medical databases show 1 in 10 hospitalized
    middle-aged coronavirus patients in U.S. do not survive. Washington
    Post. April 11, 2020.
        \2\ Abelson, R. Dialysis Patients Face Close-Up Risk From
    Coronavirus. New York Times. April 11, 2020.
        \3\ Rubin R. Finding Ways to Reduce Coronavirus Exposure During
    Dialysis. JAMA. Published online April 16, 2020. doi:10.1001/
    jama.2020.6158
        \4\ Bernstein, L., Johnson, C. Y., Kaplan, S., & McGinley, L.
    Coronavirus destroys lungs but doctors are finding its damage in
    kidneys, hearts and elsewhere. Washington Post. April 15, 2020.
    ---------------------------------------------------------------------------
        To date, NIDDK has identified several opportunities for research of
    the impact of COVID-19 on the kidney and on people with kidney
    diseases.\5\ Such areas identified by NIDDK to-date include:
      --Collection of biosamples that could inform the pathogenesis of
            COVID-19 associated kidney diseases.
      --Studies to gather data from healthcare systems and ongoing clinical
            trials to better understand whether patients with COVID-19 and
            diseases in the mission of NIDDK have different outcomes based
            on underlying disease factors or therapies for their condition.
      --Studies to identify risk factors that could lead to modification of
            therapy in high risk individuals such as patients with acute
            kidney injury and other diseases within the mission of NIDDK
            that are treated with immunomodulators or biologic pathway
            inhibitors
      --Studies to identify novel pathogenic pathways and potential
            translational targets for the development of kidney diseases
            associated with COVID-19 infection using relevant in vitro and
            in vivo studies of the kidney.
      --Pilot clinical studies designed to understand the natural history
            of COVID-19 related acute kidney injury, or to evaluate
            interventions to prevent or treat COVID-19-induced acute kidney
            injury.
        However, as currently structured, such research is funded out of
    previously obligated fiscal year 2020 appropriations, limiting the
    scope of research NIDDK will be able to support. The scientific
    challenges facing the kidney community--such as the link between COVID-
    19 and kidney injury, the unique susceptibility of people with kidney
    diseases to COVID-19, and the response of people with kidney diseases
    to vaccines and medications developed to address COVID-19--are critical
    for providing optimal care during the current pandemic and improving
    the response to future pandemics, and require immediate and dedicated
    funding.
        With additional funding, NIDDK could expand supported opportunities
    of investigation to include critical areas such as:
      --Studies to identify the response of people with kidney diseases,
            including those with a transplant or receiving dialysis, to
            COVID-19 vaccines and medications, which may be different than
            in populations without kidney diseases
      --Understanding infectious disease transmission among mandatory
            congregate populations for healthcare, including patients
            requiring in-center dialysis
      --Interactions between COVID-19 and people with kidney diseases, such
            as the observed decrease of cytokine storms in kidney patients,
            and its impact on the development of COVID-19 prognosis and
            therapeutics
      --Strategies to support transition to and maintain home modalities of
            care for kidney failure
        We respectfully request that Congress provide $100,000,000 in
    emergency supplemental funds for NIDDK in addition to regular fiscal
    year 2021 appropriations, identical to what was provided in the CARES
    Act to the National Heart Lung and Blood Institute to study questions
    of similar urgency.
        Thank you again for your leadership, and for your consideration of
    our request. Should you have any questions or wish to discuss NIDDK or
    kidney research in more detail, please contact Erika Miller with the
    American Society of Pediatric Nephrology at emiller@dc-crd.com or
    Rachel Meyer with the American Society of Nephrology at rmeyer@asn-
    online.org.
                    about the american society of nephrology
        The American Society of Nephrology is a 501(c)(3) non-profit, tax-
    exempt organization that leads the fight against kidney disease by
    educating the society's more than 20,000 nephrologists, scientists, and
    other healthcare professionals, advancing research and innovation,
    communicating new knowledge, and advocating for the highest quality
    care for patients. For more information, visit www.asn-online.org.
               about the american society of pediatric nephrology
        Founded in 1969, the American Society of Pediatric Nephrology is a
    professional society composed of pediatric nephrologists whose goal is
    to promote optimal care for children with kidney disease and to
    disseminate advances in the clinical practice and basic science of
    pediatric nephrology. ASPN currently has over 600 members, making it
    the primary representative of the Pediatric Nephrology community in
    North America.
    ---------------------------------------------------------------------------
        \5\ NIDDK. Notice of Special Interest (NOSI): Availability of
    Urgent Competitive Revision Supplements on Coronavirus Disease 2019
    (COVID-19) within the Mission of NIDDK. April 9, 2020.
    ---------------------------------------------------------------------------
                                     ______

            Prepared Statement of the American Society of Nephrology
        On behalf of the more than 37 million Americans living with kidney
    diseases, the American Society of Nephrology respectfully requests that
    in the Office of the Secretary of Health and Human Services (IOS),
    General Department Management, for the Office of the Chief Technology
    Officer (CTO), $25 million in be included for KidneyX, a public-private
    partnership to accelerate innovation in the prevention, diagnosis, and
    treatment of kidney diseases, in the fiscal year 2021 Labor, Health and
    Human Services, Education and Related Agencies Appropriations bill, and
    for $200 million be provided in emergency supplemental appropriations
    to accelerate the development of the artificial kidney to meet the
    needs brought to light by the COVID-19 pandemic.
    accelerating innovation in the prevention, diagnosis, and treatment of
                                kidney diseases
        More than 37 million people in the United States are living with
    kidney diseases, and more than 750,000 have kidney failure, for which
    there is no cure. Despite the significant burden of kidney diseases,
    there has been a dearth of innovation in this space compared to other
    areas of medicine. Our healthcare system has fostered a sense of
    complacency with current therapies and technologies, and complex
    barriers deter innovators and investors from entering the kidney care
    space to develop therapies that improve the quality of life for
    patients and bring better value to the system. Americans affected by
    kidney diseases deserve better.
        The status quo for treating and managing kidney diseases is far too
    costly to taxpayers to continue without intervention. The Medicare
    program spent more than $36 billion to manage kidney failure through
    Medicare's End Stage Renal Disease (ESRD) program in fiscal year 2017--
    more than 7 percent of all Medicare spending and more than either the
    entire NIH or entire NASA budget. Further, the prevalence of kidney
    diseases is growing and costs taxpayers and the Medicare program
    billions: $120 billion in 2017 alone, or 34 percent of traditional
    Medicare spending. As the only automatic entitlement program regardless
    of age in Medicare, taxpayers bear the vast burden of these costs.
    Despite this significant burden, there has been a lack of innovation in
    the prevention, diagnosis, and treatment of kidney diseases for
    decades.
        These findings highlight the need for KidneyX to address the
    barriers to innovation and investment. KidneyX stimulates the
    commercialization of new therapies while providing a catalyst for
    investment by the private market in three specific ways that are not
    currently addressed by market forces or Federal efforts:
      --Providing funding to promising innovators to fill specific unmet
            patient product development needs-informed by patients-through
            a series of prize competitions.
      --De-risking the commercialization process by fostering coordination
            among the National Institutes of Health, the Food and Drug
            Administration, Centers for Diseases Control and Prevention,
            and the Centers for Medicare and Medicaid Services to provide a
            clear, predictable path towards commercialization, led by the
            Office of the Chief Technology Officer within the HHS IOS.
      --Creating a sense of urgency within the private sector to develop
            new therapies for people with kidney diseases, repositioning
            the kidney space as an attractive and untapped market.
        KidneyX is already starting to deliver on its mission to accelerate
    breakthroughs and generate a sense of urgency to bring new solutions to
    kidney patients. KidneyX has launched 3 prize competitions which have
    jointly received more than 350 submissions and has distributed $2
    million in prizes to a diverse portfolio of awardees. KidneyX launched
    its first prize competition Redesign Dialysis Phase 1 in 2018 followed
    by its second and third competitions, Redesign Dialysis Phase 2 and the
    Patient Innovator Prize in 2019, and plans to launch additional prizes
    including the moonshot Artificial Kidney Prize mandated in the
    Executive Order on Advancing American Kidney Health in 2020.
        KidneyX is a patient-driven solution supported by an invested
    community. KidneyX is a true public-private partnership: the private
    sector has already committed $25,000,000 to KidneyX and is committed to
    matching Federal funding to achieve a total $250,000,000 in the first 5
    years. KidneyX received $5 million in fiscal year 2020 enacted
    appropriations legislation.
        We respectfully request that the Labor-HHS Subcommittee continue
    its commitment to bringing new therapies for people with kidney
    diseases by appropriating $25,000,000 in fiscal year 2021 for KidneyX,
    catalyzing private sector investment across the prevention, diagnosis,
    and treatment of kidney diseases. In addition, we also ask that you
    include the following language in the report accompanying your
    Committee's appropriations bill:
        The Committee is aware that more than 37 million U.S. citizens are
    living with kidney diseases, and for more than 750,000 of those
    individuals, the diseases progress to kidney failure, requiring access
    to dialysis or kidney transplantation to live. The Committee notes that
    kidney failure alone accounted for more than 7 percent of Medicare
    spending (approximately $36 billion) in fiscal year 2017 and that
    kidney disease accounted for 34 percent of Medicare spending
    (approximately $120 billion) in fiscal year 2017. The Committee
    commends HHS for its efforts to improve the lives of these individuals
    through KidneyX.
        Given the high cost of kidney disease in terms of health
    consequences and Federal spending, the Committee recommends that a
    total of $25,000,000 be added to the funds for the Office of the
    Secretary in fiscal year 2021 for the Office of the Chief Technology
    Officer, and that those funds be made available to support KidneyX.
    These funds would represent the first of a five-year commitment to
    support KidneyX at $25,000,000 each year. The Committee has included
    funding to support this recommendation. This funding will accelerate
    the development and adoption of novel therapies and technologies that
    improve the diagnosis and treatment of patients with kidney diseases,
    through a variety of fund awards, technical assistance, and other
    support resources and services.
    increasing the resilience of kidney health care to covid-19 and future
                                     crises
        People with kidney diseases are among the most vulnerable to
    infectious diseases and there is mounting evidence that COVID-19 poses
    a unique risk: hospitalized COVID-19 patients with kidney diseases are
    two and half times more likely to die from the virus.\1\ The risks
    posed by COVID-19 are especially salient among people with kidney
    failure receiving in-center dialysis or living with a kidney
    transplant.\2\ Sadly, the first COVID-19 death in the U.S. was a kidney
    patient.\3\ In addition, while it is commonly understood that COVID-19
    causes damage to the lungs, increasing evidence suggests that the SARS-
    CoV-2 virus causes kidney injury. Anecdotal evidence from New York and
    China suggest that as many as 14-30 percent of intensive care unit
    patients with COVID-19 lose kidney function and require emergency
    kidney replacement therapy,\4\ potentially adding thousands of new
    cases of kidney failure to our healthcare system.
    ---------------------------------------------------------------------------
        \1\ Achenbach, J. Medical databases show 1 in 10 hospitalized
    middle-aged coronavirus patients in U.S. do not survive. Washington
    Post. April 11, 2020.
        \2\ Abelson, R. Dialysis Patients Face Close-Up Risk From
    Coronavirus. New York Times. April 11, 2020.
        \3\ Rubin R. Finding Ways to Reduce Coronavirus Exposure During
    Dialysis. JAMA. Published online April 16, 2020. doi:10.1001/
    jama.2020.6158.
        \4\ Bernstein, L., Johnson, C. Y., Kaplan, S., & McGinley, L.
    Coronavirus destroys lungs but doctors are finding its damage in
    kidneys, hearts and elsewhere. Washington Post. April 15, 2020.
    ---------------------------------------------------------------------------
        The current U.S. kidney health infrastructure relies heavily on in-
    center hemodialysis to treat kidney failure, a care modality that
    requires mass congregation of vulnerable populations and large numbers
    of medical personnel. People receiving in-center hemodialysis are
    unable to follow Federal guidelines recommending social distancing, the
    therapy requires sitting in close proximity to other immune-compromised
    patients for 12-16 hours every week.
        While numerous efforts undertaken by Congress and the
    Administration, especially the Executive Order on Advancing American
    Kidney Health, have started to transform the status quo of care, the
    COVID-19 pandemic has demonstrated that more must be done to accelerate
    the development of novel therapies that could mitigate the challenges
    facing people with kidney failure. New technology, such as the
    artificial kidney, could enable more patients to safely receive the
    care they need at home while maintaining a higher quality of life.\5\
    An artificial kidney would mitigate challenges posed by the current
    pandemic--such as the current shortage of critical hemodialysis
    supplies in New York \6\--and making our kidney health system more
    resilient to future pandemics, natural disasters, and other crises.
    ---------------------------------------------------------------------------
        \5\ Huff, C. How artificial kidneys and miniaturized dialysis could
    save millions of lives. After decades of slow progress, researchers are
    exploring better treatments for kidney failure--which kills more people
    than HIV or tuberculosis. Nature. March 11, 2020.
        \6\ Abelson, R., Fink, S., Kulish, N., Thomas, K. An Overlooked,
    Possibly Fatal Coronavirus Crisis: A Dire Need for Kidney Dialysis. New
    York Times. April 18, 2020.
    ---------------------------------------------------------------------------
        The first prize competitions held by KidneyX have fulfilled their
    objective to accelerate innovation by focusing on redesigning dialysis
    and identifying patients' innovations in their own care.\7\ This, in
    turn, has stimulated the private markets' attention to promising
    technologies for people with kidney failure. Based on KidneyX's
    Redesign Dialysis Phase 1 and 2 prize competitions, new approaches and
    innovators have surfaced. Wearable or implantable artificial kidney
    technology are progressing to stages that with appropriate support
    could be ready for regulatory consideration within 3 years, meeting the
    needs of kidney patients in the current pandemic and increasing the
    resilience of our kidney health system for future crises. While total
    to-market costs for the artificial kidney will likely exceed
    $400,000,000 per prototype, prize purses of $50,000,000 per prototype
    will be sufficient to draw the immediate attention of private
    investors.
    ---------------------------------------------------------------------------
        \7\ Prize Competitions. KidneyX. https://www.kidneyx.org/
    PrizeCompetitions. Accessed April 22, 2020.
    ---------------------------------------------------------------------------
        We respectfully request that the Labor-HHS Subcommittee provide
    $200,000,000 to KidneyX in emergency supplemental funding for the
    accelerated development of artificial kidney technologies, shortening
    the runway for therapies that will increase the resilience of our
    kidney healthcare system.
        Thank you for your consideration of this important request. Should
    you have questions or need additional information, do not hesitate to
    contact Rachel Meyer, Director of Policy and Government Affairs of the
    American Society of Nephrology, at rmeyer@asn-online.org.
                    about the american society of nephrology
        The American Society of Nephrology is a 501(c)(3) non-profit, tax-
    exempt organization that leads the fight against kidney disease by
    educating the society's more than 22,000 nephrologists, scientists, and
    other healthcare professionals, advancing research and innovation,
    communicating new knowledge, and advocating for the highest quality
    care for patients. For more information, visit www.asn-online.org.

        [This statement was submitted by Rachel Meyer, Director of Policy
    and
    Government Affairs, American Society of Nephrology.]
                                     ______

     Prepared Statement of the American Speech-Language-Hearing Association
        Chairman Blunt, Ranking Member Murray, members of the Subcommittee:
    The American Speech-Language-Hearing Association (ASHA) thanks you for
    the opportunity to submit testimony to the Subcommittee on the fiscal
    year 2021 Labor-HHS-Education funding bill. My name is Theresa H.
    Rodgers, ASHA's President for 2020. ASHA is the national professional,
    scientific, and credentialing association for 211,000 members and
    affiliates who are audiologists; speech-language pathologists; speech,
    language, and hearing scientists; audiology and speech-language
    pathology support personnel; and students.
        ASHA thanks the members of the Subcommittee for increasing funding
    for the Individuals with Disabilities Education Act (IDEA) last year.
    Congress must continue to make significant investments in IDEA to meet
    the needs of the country's education system by ensuring children with
    disabilities receive the Free Appropriate Public Education (FAPE) to
    which they are entitled under law. Substantially increasing funding for
    IDEA is the right step in fulfilling the promise that Congress made to
    fund 40 percent of the average per-pupil expenditure in public
    elementary and secondary schools. This critical program serves more
    than 6.5 million children in our nation's schools, including students
    with communication disorders.\1\ Infants and toddlers with disabilities
    and their families receive early intervention services under IDEA Part
    C, and children and youth receive special education and related
    services under IDEA Part B. To support special education, ASHA requests
    an increase to $14 billion for IDEA Part B State Grants funds for
    fiscal year 2021, which includes an increase to $684 million for IDEA's
    Part B Section 619 as well as an increase in IDEA Part C funding to
    $491 million for fiscal year 2021.
    ---------------------------------------------------------------------------
        \1\ U.S. Department of Education. (n.d.). About IDEA. Retrieved May
    20, 2020 from: https://sites.ed.gov/idea/about-idea/.
    ---------------------------------------------------------------------------
        In light of the pandemic of Coronavirus Disease 2019 (COVID-19),
    ASHA is pleased that the Coronavirus Aid, Relief, and Economic Security
    (CARES) Act (Public Law 116-136) included over $15 billion in the
    Education Stabilization Fund earmarked for elementary and secondary
    education, through the Governor's Emergency Education Fund and the
    Elementary and Secondary Education Relief Fund. This funding will be
    essential to support states and local education agencies as they
    continue to provide FAPE to all students with disabilities. However,
    without clear data on how much of the funding is dedicated to IDEA
    services and supports, fiscal year 2021 funding for IDEA must be
    robust. As schools across the nation move to a virtual education
    setting, providing special education services becomes more difficult. A
    surge in funding is vital to ensure students with disabilities receive
    a continuum of care to prevent any regression.
        ASHA urges your continued support for newborn hearing screening and
    intervention. ASHA requests a total of $30.5 million for Early Hearing
    Detection and Intervention (EHDI) programs, which includes $19 million
    for the Health Resources and Services Administration (HRSA) and $11.5
    million for the Centers for Disease Control and Prevention (CDC).
        Full support for EHDI is critical to ensure all newborns are
    screened for hearing loss. Hearing loss is a serious health condition
    that impacts more than 34 million Americans, and two to three out of
    every 1,000 children in the United States are born with a detectable
    level of hearing loss in one or both ears.\2\ Last reauthorized in
    2017, EHDI provides state grants to develop and support infant hearing
    screening and intervention programs through HRSA, and requires the CDC
    to provide surveillance of screenings, referral to treatment and
    diagnosis, technical assistance, and applied research. EHDI has proven
    to be one of the nation's most important public health programs,
    offering universal early hearing screening and interventions to all
    newborns, infants, and young children.
    ---------------------------------------------------------------------------
        \2\ National Institute on Deafness and Other Communication
    Disorders (NIDCD). (2017). Researchers help uncover a root cause of
    childhood deafness in the inner ear using animal model. Retrieved from
    https://www.nidcd.nih.gov/news/2017/childhood-deafness-research.
    ---------------------------------------------------------------------------
        Failure to fund EHDI at its full authorization level may leave
    thousands of children with undiagnosed hearing loss and deprive
    children who are deaf or hard of hearing from receiving follow-up
    services that improve language skills and development as many
    healthcare appointments and treatments have been delayed or cancelled
    due to the COVID-19 pandemic.
        When state-based universal newborn hearing screenings were
    established with the passage of the Child Health Act of 2000, only 46.5
    percent of infants were screened for hearing loss, yet with today's
    EHDI programs, 98 percent of infants are screened for hearing
    loss.\3,4\ Additional resources will assist CDC and HRSA in
    strengthening hearing loss identification and reducing intervention
    service gaps that have occurred during the COVID-19 public health
    emergency. When hearing loss is detected late, the critical time for
    stimulating the auditory pathways to hearing centers of the brain is
    lost. Late hearing loss detection also delays speech and language
    development affecting social and emotional growth, academic
    achievement, and employment options. Funding for hearing screenings and
    early intervention services are a smart investment for the U.S.
    economy, and saves the country approximately $200 million in education
    costs each year alone.\5\
    ---------------------------------------------------------------------------
        \3\ Centers for Disease Control and Prevention (CDC). (2010).
    Summary of infants screened for hearing loss, diagnosed, and enrolled
    in early intervention, United States, 1999-2008. Atlanta, GA: U.S.
    Department of Health & Human Services, CDC. Retrieved from https://
    www.cdc.gov/ncbddd/hearingloss/2008-data/ehdi_1999_2008.pdf.
        \4\ Centers for Disease Control and Prevention (CDC). (2018).
    Summary of 2016 National CDC EHDI Data. Retrieved from https://
    www.cdc.gov/ncbddd/hearingloss/2016-data/01-2016-HSFS-Data-Summary-
    h.pdf.
        \5\ Gross, S.D. (2007). Education cost savings from early detection
    of hearing loss: New findings. Volta Voices, 14(6),38-40.
    ---------------------------------------------------------------------------
        ASHA applauds the efforts of the Subcommittee to increase the
    National Institutes of Health (NIH) budget. We are supportive of
    efforts to increase the investment in research across all institutes
    involved with communication sciences and disorders. Congress must
    support researchers who devote their careers to finding causes and
    prevention of communication disorders. Communication disorders are the
    most prevalent of all disabling conditions and approximately 46 million
    Americans have a communication disorder.\6\ These disorders impact the
    economy through costs related to lost productivity, special education
    services, rehabilitation needs, healthcare expenditures, and lost
    revenues. Continued increases in funding for the National Institute on
    Deafness and Other Communication Disorders (NIDCD) are needed to ensure
    groundbreaking research on communication sciences continues and
    expands. Specifically, ASHA supports a $17 million increase to the
    NIDCD for a total fiscal year 2021 level of $507 million.
    ---------------------------------------------------------------------------
        \6\ National Institute on Deafness and Other Communication
    Disorders (NIDCD). (2019). Mission. Retrieved from https://
    www.nidcd.nih.gov/about/mission.
    ---------------------------------------------------------------------------
        ASHA also supports providing a $3 million increase for the National
    Institute on Disability, Independent Living, and Rehabilitation
    Research (NIDILRR) at the Administration for Community Living (ACL).
    With this increase to $115 million, NIDILRR's funding for fiscal year
    2021 would allow the Institute to continue supporting the wide range of
    applied research that it conducts and expand into new areas of emerging
    science to support the population of individuals with relevant
    disabilities.
        Chairman Blunt, Ranking Member Murray and members of the
    Subcommittee, on behalf of ASHA and its 211,000 members, we again
    appreciate the opportunity to provide these comments and thank you for
    your efforts to eradicate delayed detection and intervention for
    hearing loss; support additional resources for special education
    services; and your continued support for patient-oriented clinical
    research funding. We look forward to working with you and the
    Subcommittee as the fiscal year 2021 appropriations process moves
    forward.

        [This statement was submitted by Theresa H. Rodgers, MA, CCC-SLP,
    President, American Speech-Language-Hearing Association.]
                                     ______

           Prepared Statement of the American Statistical Association
        Dear Chair Blunt and Ranking Member Murray,
        I write in support of the Bureau of Labor Statistics (BLS), the
    National Center for Education Statistics (NCES), and the National
    Center for Health Statistics (NCHS) for your consideration as you draft
    the fiscal year 2021 Labor, Health and Human Services, Education, and
    Related Agencies appropriations bill.
        For BLS, thank you for your strong support of its programs through
    the fiscal year 2020 level of $628 million. The additional funding
    enables BLS to carry out and continue to improve its ongoing programs
    and better understand the impact of the digital economy on our
    workforce. I also convey our strong support for the administration's
    request of $645 million for the fiscal year 2021 program budget in
    addition to the $13 million for the BLS relocation to Suitland,
    Maryland. As you know, the BLS produces economic data that are
    essential for evidence-based decisionmaking by businesses and financial
    markets, Federal and local officials, and households faced with
    spending and career choices. The BLS, like every Federal statistical
    agency, must modernize in order to produce the gold standard data on
    jobs, wages, skill needs, inflation, productivity and more on which our
    businesses, researchers, and policymakers rely heavily. BLS'
    modernization efforts have been hampered by its $73 million (12
    percent) loss of purchasing power since fiscal year 2009. (See enclosed
    graph.)

        The administration's request level is a positive step towards the
    restoration of BLS resources. We fully support the proposals, including
    for the Job Openings and Labor Turnover Survey (JOLTS). The increased
    sample size for JOLTS will enable state-level data and more detailed
    industry data, which will be especially helpful to governors, regional
    economic development organizations, and other policymakers in the
    Covid-19 recovery period. We also support the proposed investments for
    the Consumer Expenditure program. This program is overdue for a new
    design given its burden on respondents. Resources now feasible through
    big data and technological advances have the potential to improve
    inflation and poverty measurement. These improved programs will be
    especially informative as our country recovers from the Covid-19
    pandemic.
        For the NCHS, we recommend a funding level of at least $189
    million--an increase of $14.6 million and realignment of $14 million in
    ongoing transfers--which would restore NCHS' budget to its inflation-
    adjusted fiscal year 2010 funding level. While NCHS work has been
    critical to monitoring deaths due to Covid-19, recent events, including
    the opioid crisis, have made clear that our public health data
    surveillance systems are challenged in many ways, as reported this
    spring in a National Academies' seminar.\1\ For example, current
    systems are slow to alert us to ``change in key indicators so that
    interventions can be implemented early in a crisis...'' They need to be
    redesigned for automatic reporting and for flexibility to adjust
    quickly to new crises and to data collection disruption. The
    recommended funding level would help NCHS to address these challenges.
    ---------------------------------------------------------------------------
        \1\ https://www.nationalacademies.org/event/05-08-2020/cnstat-
    public-seminars-deaths-of-despair-and-the-future-of-capitalism, at
    minute, 1:22.
    ---------------------------------------------------------------------------
        For the NCES, we echo our requests in a March 23 joint letter to
    you with the American Educational Research Associations, two former
    NCES commissioners, and two former chief statisticians of the United
    States:

        To ensure NCES continues serving its vital mission, we request
            inclusion of provisions in the fiscal year 2021 appropriations
            bill that would enable NCES to rebuild internal capacity
            through hiring full-time, permanent staff. We also urge at
            least a 5 percent budget increase for the NCES statistics
            account that would partially redress its more than 20 percent
            loss in purchasing power since fiscal year 2009.
        We reiterate points from that letter in the next three paragraphs.
    The NCES has an ongoing staffing crisis that has reached a point this
    year likely to result in terminations and cutbacks of critical
    statistical information programs. All Federal statistical agencies
    conduct some of their work with government staff resources and contract
    with others--often specialized profit-making firms, but sometimes other
    Federal agencies--to conduct the remainder. The NCES has an
    exceptionally high budget-to-staff ratio, $3 million/FTE, which is nine
    times the median of other Federal statistical agencies. This means a
    higher proportion of the critical statistical data collection design
    and analysis--normally expected of Federal employees--is, instead,
    performed by contractors. Compared with other statistical agencies,
    NCES staff resources are disproportionately allocated to overseeing
    contractors who perform many of these essential statistical activities.
    We believe this shift has gone too far for THE NCES to be a healthy
    statistical organization and strongly recommend Congress take explicit
    actions to address this condition in the fiscal year 2021 appropriation
    process. A set-aside allocation of 20 additional staff would provide a
    good start to rebuild NCES staff resources.
        We also urge the NCES statistics account be funded at a level of at
    least $115 million. As shown in the enclosed graph, this account has
    lost more than 20 percent of its purchasing power since fiscal year
    2009, when its budget was $116 million. The loss of purchasing power is
    even greater since fiscal year 2010-fiscal year 2012, when the account
    was at $125 million or higher. (Our recommended level does not include
    the $3 million in the administration's request that is transferred from
    the statewide longitudinal data systems for the Privacy Technical
    Assistance Center.) The requested increase of at least 5 percent will
    help NCES' ability to track emerging education trends, reduce
    respondent burden, and provide more timely and regional data--efforts
    that are currently taxed due to both the loss of the agency's
    purchasing power and its staffing crisis.
        Among the surveys that should be prioritized for continuation are
    the School Survey on Crime and Safety (SSOCS) and the Fast Response
    Survey System (FRSS), which we understand may be discontinued until
    staff and funding are in place. SSOCS' estimates of school crime,
    discipline, and disorder--as well as associated programs and policies--
    are essential to ensuring our schools provide safe learning
    environments for our nation's children. FRSS was established to collect
    data quickly, with minimum response burden, to inform new policies and
    would be especially helpful in getting our schools back on track as we
    recover from the Covid-19 pandemic. Increased funding will also be
    necessary to create and maintain the Postsecondary Student Data System,
    a major new project in the College Affordability Act of 2019 currently
    working its way through Congress for reauthorization of the Higher
    Education Act.
        Finally, thank you for your strong support for the National
    Institutes of Health. We also strongly support the NIH budget.
        Sincerely.

        [This statement was submitted by Ron Wasserstein, Executive
    Director, American Statistical Association.]
                                     ______

              Prepared Statement of the American Thoracic Society

                        SUMMARY: FUNDING RECOMMENDATIONS
                                 [in millions $]
    ------------------------------------------------------------------------

    ------------------------------------------------------------------------
    NATIONAL INSTITUTES OF HEALTH...........................   $44.7 billion
        National Heart, Lung & Blood Institute..............          $3.890
        National Institute of Allergy & Infectious Disease..          $6.345
        National Institute of Environmental Health Sciences.          $860.3
        Fogarty International Center........................           $82.9
        National Institute of Nursing Research..............          $173.4
    ------------------------------------------------------------------------
    CENTERS FOR DISEASE CONTROL AND PREVENTION..............          $8.300
        National Institute for Occupational Safety & Health.          $354.8
        Asthma Programs.....................................             $34
        Div. of Tuberculosis Elimination....................          $195.7
        Office on Smoking and Health........................            $310
    ------------------------------------------------------------------------

        The ATS is a multi-disciplinary society of 16,000 pulmonary,
    critical care and sleep specialists who are on the frontlines of the
    COVID-19 pandemic treating individuals and conducting vital scientific
    research to develop diagnostics, treatments, and prevention
    interventions for this and all respiratory diseases, critical illnesses
    and sleep disorders.
                            lung disease in america
        Respiratory diseases are the third leading cause of death in the
    U.S., responsible for one of every seven deaths. Diseases affecting the
    respiratory (breathing) system include COVID-19, chronic obstructive
    pulmonary disease (COPD), lung cancer, influenza, sleep disordered
    breathing, tuberculosis (TB), occupational lung disease, asthma, and
    critical illnesses such as sepsis.
                         national institutes of health
        The coronavirus crisis has revealed the critical national public
    health security leadership role that the NIH holds in scientific
    expertise to guide the nation in critical biomedical. In order to
    accelerate the development of life-saving cures and treatments and
    innovative prevention interventions, it is essential for Congress to
    continue providing robust, predictable funding increases across the
    full spectrum of NIH-supported research. We ask the subcommittee to
    provide at least $44.7 billion in funding for the NIH in fiscal year
    2021.
        While the biomedical research community is focusing on COVID-19-
    related research, other critical research has been slowed or halted
    completely due to academic center and laboratory closures. As a result
    of research pauses, the scientific workforce of investigators,
    postdoctoral candidates and technical support staff across the U.S. is
    facing deep uncertainty about the future. In addition to the fiscal
    year 2021 appropriation of $44.7 billion, the ATS urges Congress to
    provide $31 billion in funding to expand COVID-19 related research,
    support biomedical research grant and contract supplements through NIH
    and other Federal agencies, research facility operating costs and
    additional postdoctoral fellowships and other research training
    positions in the next COVID-19 response package.
                    national heart, lung and blood institute
        The National Heart, Lung and Blood Institute (NHLBI) is conducting
    vital research to address morbidity and mortality among individuals
    with COVID-19, develop interventions to mitigate life-threatening
    cardiovascular, respiratory and hematological complications of the
    disease and develop new therapeutics, including for high-risk
    populations. In addition to the fiscal year 2021 appropriation of
    $3.890 billion, the ATS urges Congress to provide supplemental funding
    of $300 million to permit NHLBI to sustain and expand its investment in
    basic, clinical, and translational across heart, lung, blood and sleep
    scientific research to address these critical needs related to COVID-19
    and prepare for additional waves of disease in the coming months.
        Even though respiratory disease is the third leading cause of death
    in the U.S., respiratory research is underfunded. The COPD death rate
    has doubled within the last 30 years and is still increasing, while the
    rates for the other top causes of death (heart disease, cancer, and
    stroke) have decreased by over 50 percent. Despite the rising
    respiratory disease burden, research funding for the disease is
    disproportionally low relative to funding invested for the other three
    leading causes of death. In order to stem the devastating effects of
    respiratory disease, NIH, including NHLBI research funding must grow.
        Chronic Obstructive Pulmonary Disease
        Chronic Obstructive Pulmonary Disease (COPD) is the fourth leading
    cause of death in the United States and the third leading cause of
    death worldwide. CDC estimates that 12 million patients have COPD; an
    additional 12 million Americans are unaware that they have this life-
    threatening disease. COPD costs the economy almost $50 billion a year,
    including $29 billion in direct health expenditures and $29 billion in
    indirect costs such as lost wages.
        The COPD National Action Plan, released in 2017, aims to expand
    surveillance and research of the disease, develop public health
    interventions, and increase public awareness of the disease. The ATS
    urges Congress to provide NIH's National Heart, Lung and Blood
    Institute (NHLBI) with $75 million in fiscal year 2021 for
    implementation of the COPD National Action Plan. In addition, we urge
    the subcommittee to provide $5 million for CDC for creation of a
    Chronic Disease Education and Awareness Program to provide competitive
    grants supporting public health efforts for COPD and other chronic
    diseases, as proposed in the fiscal year 2020 House Labor-HHS-ED bill.
    We also urge CDC to include COPD-based questions to future CDC health
    surveys, including the National Health and Nutrition Evaluation Survey
    (NHANES), the Behavioral Risk Factor Surveillance System (BRFSS) and
    the National Health Information Survey (NHIS).
                   centers for disease control and prevention
        CDC is our front-line national public health agency responding to
    COVID-19. In order to halt the COVID-19 pandemic, it is critical that
    the agency receives sustained funding increases. The ATS supports a
    funding level for the CDC that enables it to effectively respond to
    infectious disease outbreaks such as COVID-19, provide vital support to
    state and local public health programs and continue to support chronic
    disease prevention and occupational safety and training and health
    research. The ATS recommends a funding level of at least $8.300 billion
    for the CDC in fiscal year 2021.
                             antibiotic resistance
        According to the CDC's 2019 report, Antibiotic Resistance Threats
    in the United States up to 35,000 deaths occur in the U.S. annually due
    to antibiotic resistant bacteria including drug resistant pneumonia and
    sepsis infections. The rise of antibiotic resistance shows the need to
    increase efforts through the CDC, NIH and other Federal agencies to
    monitor and prevent antibiotic resistance and develop rapid new
    diagnostics and treatments. This includes the following recommendations
    for CDC programs:
      --$200 million for the Antibiotic Resistance Solutions Initiative
      --$37.5 million for the Advanced Molecular Detection (AMD) Initiative
        We urge the committee to provide $6.345 billion for the National
    Institutes of Allergy and Infectious Disease (NIAID) to spur research
    into rapid new diagnostics and treatments and $230 million for the
    Biomedical Advanced Research and Development Authority (BARDA) to
    support antimicrobial research and development.
                                tobacco control
        Tobacco use is the leading preventable cause of death in the U.S.,
    responsible for one in five deaths annually. Tobacco cessation and
    prevention activities are among the most effective and cost-effective
    investments in disease prevention. The CDC's Office on Smoking and
    Health (OSH) is the lead Federal program for tobacco prevention and
    control and created the ``Tips from Former Smokers'' Campaign, which
    has prompted hundreds of thousands of smokers to call 1-800-QUIT-NOW or
    visit smokefree.gov for assistance in quitting--with even more smokers
    making quit attempts on their own or with the assistance of their
    physicians. The ATS recommends fiscal year 2021 funding of $310 million
    for the Office of Smoking and Health.
                                     asthma
        Asthma is a significant public health problem in the U.S.
    Approximately 25 million Americans currently have asthma. In 2017,
    3,564 Americans died because of asthma exacerbations. Asthma is the
    third leading cause of hospitalization among children under the age of
    15 and is a leading cause of school absences from chronic disease.
    African Americans have the highest asthma prevalence of any racial/
    ethnic group and the age-adjusted death rate for asthma in this
    population is three times the rate in whites. We ask that the
    subcommittee provide $34 million in fiscal year 2021 for CDC's National
    Asthma Control Program.
                                     sleep
        Several research studies demonstrate that sleep-disordered
    breathing and sleep-related illnesses affect an estimated 50-70 million
    Americans. The public health impact of sleep illnesses and sleep
    disordered breathing is still being determined, but is known to include
    increased mortality, traffic accidents, cardiovascular disease,
    obesity, mental health disorders, and other comorbidities. The ATS
    recommends a funding level of $1 million in fiscal year 2021 to support
    activities related to sleep and sleep disorders at the CDC, including
    surveillance activities and public educational activities. The ATS also
    recommends an increase in funding for research on sleep disorders at
    the NHLBI's Nation Center for Sleep Disordered Research (NCSDR).
                                  tuberculosis
        Tuberculosis (TB) is the leading global infectious disease killer,
    ahead of HIV/AIDS, claiming 1.5 million lives each year. In the U.S.,
    every state reports cases of TB annually and in 2019, twenty-one states
    reported TB increases. Drug resistant tuberculosis was identified as a
    serious public health threat to the U.S. in CDC's 2019 report on
    antimicrobial resistance. And there are up to 13 million people in the
    U.S. with latent TB infection (LTBI), the reservoir of future active
    cases. Yet CDC's domestic TB program has been flat funded since fiscal
    year 2014, leaving states ill-equipped to manage drug resistant TB and
    unable to do LTBI testing and preventive treatment. The continued
    global pandemic of this airborne infectious disease demand that the
    U.S. strengthen our investment in global and domestic TB control and
    research to develop new TB diagnostic, treatment, and prevention tools.
        The ATS recommends a funding level of $195.7 million in fiscal year
    2021 for CDC's Division of TB Elimination and $21 million for CDC's
    Global TB program through the Center for Global Health. We urge the NIH
    to expand research to develop new tools to address TB. Additionally, in
    recognition of the unique public health threat posed by drug resistant
    TB, the ATS urges BARDA to support research and development into new
    drug-resistant TB diagnostic, treatment, and prevention tools.
        Most TB programs around the country report that TB program staff
    and some TB hospital units have been moved to focus almost exclusively
    on COVID-19. The COVID-19 emergency in the U.S., and its economic
    impact, has put enormous strain on state and local budgets that fund
    the majority of TB services. CDC's global TB program is providing
    critical technical assistance to countries struggling to address COVID
    while maintaining TB services. In addition to the fiscal year 2021
    appropriations for these programs, the ATS urges Congress to provide
    $30 million for CDC, state, and local tuberculosis (TB) programs and
    $20 million for CDC's global TB program in the next COVID-19 response
    legislation.
                             pediatric lung disease
        The ATS is pleased to report that infant death rates for various
    lung diseases have declined for the past 10 years. Many of the
    precursors of adult respiratory disease start in childhood. For
    instance, many children with respiratory illness grow into adults with
    COPD. It is estimated that 6.2 million children suffer from asthma. The
    ATS encourages the NHLBI and NICHD to sustain and expand research
    efforts to study lung development and pediatric lung diseases.
                                critical illness
        The burden associated with the provision of care to critically ill
    patients is enormous and is anticipated to increase significantly as
    the population ages. Approximately 200,000 people in the United States
    require hospitalization in an intensive care unit because they develop
    a form of pulmonary disease called Acute Lung Injury. Despite the best
    available treatments, 75,000 of these individuals die each year from
    this disease. This is the approximately the same number of deaths each
    year due to breast cancer, colon cancer, and prostate cancer combined.
    Investigation into diagnosis, treatment and outcomes in critically ill
    patients should be a priority, and the NIH should be funded and
    encouraged to coordinate investigation in this area.
              researching and preventing occupational lung disease
        The ATS urges the subcommittee to provide at least $354.8 million
    in funding for the National Institute for Occupational Safety and
    Health (NIOSH). NIOSH, within the CDC, is the primary Federal agency
    responsible for conducting research and making recommendations for the
    prevention of work-related illness and injury.
                               legislative riders
        We urge the Senate to refrain from considering legislative riders
    in this and all appropriations bills. By refraining from considering
    legislative riders, Congress can more swiftly complete its
    constitutional obligation for completing appropriations bills in a
    timely manner.

        [This statement was submitted by Juan C. Celedon, MD, DrPH, ATSF,
    President, American Thoracic Society.]
                                     ______

           Prepared Statement of the American Urogynecologic Society
        The American Urogynecologic Society (AUGS) thanks the Subcommittee
    for the opportunity to submit comments for the record regarding our
    recommendations for prioritizing research on pelvic floor disorders at
    the National Institutes of Health in fiscal year 2021. AUGS is a
    national medical society whose mission is to promote the highest
    quality of care in Female Pelvic Medicine and Reconstructive Surgery
    (FPMRS, aka Urogynecology) through excellence in education, research,
    and advocacy.
        Pelvic floor disorders, which include pelvic organ prolapse and
    urinary and bowel incontinence, impact more than 25 million women
    annually in the United States, alone.
        Pelvic organ prolapse occurs when the pelvic floor muscles and
    connective tissue supporting the pelvic organs (the bladder, uterus and
    cervix, vagina, and rectum) weaken or tear and can no longer support
    these organs. This causes one or more of the pelvic organs to fall
    downward into the vagina, like a hernia. Women may feel or see tissue
    coming out of the opening of their vagina as this condition advances.
    The risk factors and causes of pelvic floor damage leading to pelvic
    organ prolapse include:
        Pregnancy and Childbirth: One in three women who has given birth
    has pelvic organ prolapse. Being pregnant and having a vaginal delivery
    can damage the pelvic muscles and nerves, allowing the organs to drop.
    This is particularly true for women who have had a large baby, many
    babies or needed forceps to deliver during a challenging birth.
        Aging and Menopause: Loss of estrogen with menopause, along with
    other changes with aging, can weaken the pelvic floor.
        Certain Health Conditions: Health problems that involve repeated
    straining (such as obesity, chronic cough, and chronic constipation).
        Genetics: Genes help determine the strength of the connective
    tissue, so a woman is more likely to develop pelvic organ prolapse if
    her mother had the condition.
        Pelvic organ prolapse is a common problem, with 1 out of 8 women
    undergoing surgery for prolapse at some point in their life. Some
    studies have shown a prevalence difference in racial and ethnic
    populations. More research is needed to better understand disparities
    in access to care and care-seeking behaviors so that we can understand
    these disparities. Pelvic organ prolapse can occur in reproductive age
    women but becomes more common as women age and after menopause.
    Treatment of pelvic organ prolapse requires significant healthcare
    resources; the annual cost of ambulatory care for pelvic floor
    disorders in the United States from 2005 to 2006 was almost $300
    million. Non-surgical treatments require frequent healthcare visits and
    surgical treatments are imperfect with 20 percent of women experiencing
    recurrences within 10 years. Surgical repair of prolapse is performed
    twice as commonly as incontinence surgery and constitutes the most
    common inpatient procedure performed in women older than 70 years.
        This has prompted many scientists to seek improved surgical
    solutions. However, when innovations are poorly studied and quickly
    promoted to a large surgical population, well-intentioned efforts can
    backfire. For example, after a period of rapid adoption, concern over
    the safety and efficacy of vaginal mesh--augmented prolapse repairs
    resulted in a ban by the FDA in 2019. Clinicians and patients still
    struggle to find reliable and safe treatments for pelvic organ
    prolapse. Advances in care must be well studied prior to wide adoption,
    and outcomes must be tracked on a large scale to identify high quality
    approaches that lead to significant improvements in women's health.
        The other two most common types of pelvic floor disorders are
    urinary and bowel incontinence. Over half of people aged 65 and older
    living at home reported urinary and/or bowel incontinence, according to
    the Centers for Disease Control and Prevention. In fact, these
    conditions are leading causes for admission to nursing homes as
    families are challenged for caring for their loved ones.
        Urinary incontinence is loss of bladder control that can lead to
    involuntary leakage of urine. The symptoms range in severity from
    occasional incidents to daily or nightly occurrences. It can happen at
    any age but is more prevalent in older individuals. The most common
    types of urinary incontinence are the following:

        Stress Incontinence.--Women most commonly develop stress urinary
            incontinence from changes that happen in pregnancy or
            childbirth which weaken the support to the urethra and urethral
            sphincter. Urine leaks when pressure is exerted on the bladder
            during coughing, sneezing, laughing, exercising or lifting
            something heavy.

        Urge Incontinence.--A sudden, intense urge to urinate that is
            followed by an involuntary loss of urine. It can cause the need
            to urinate frequently, and often throughout the night. Urge
            incontinence happens because of altered bladder nerve signaling
            and is also referred to as ``overactive bladder.''

        Mixed Incontinence.--This is a combination of stress and urge
            incontinence and is the most common form of incontinence in
            older women.

        Overflow Incontinence.--Frequent or constant dribbling of urine due
            to a bladder that doesn't empty completely. Often, these
            patients also have a neurological condition.

        Functional incontinence.--A physical or mental impairment (such as
            arthritis or Alzheimer's disease) may limit the ability to
            reach a bathroom in time.
        Incontinence has a substantial financial impact to society. In the
    United States, direct and indirect costs of overactive bladder are
    estimated at $76 billion in 2015. By the year 2020, the costs of
    overactive bladder evaluation and treatment are projected to account
    for $82.6 billion of U.S. healthcare expenditures, making it a huge
    public health burden.
        Women who suffer from pelvic floor disorders experience a
    significant adverse impact on quality of life, resulting in
    restrictions in activities, social isolation, depression and physical
    discomfort. We believe the financial and personal toll caused by pelvic
    floor disorders require a renewed focus at the National Institutes of
    Health to improve prevention and treatment strategies for these
    conditions. As part of this effort, we strongly urge that technology be
    harnessed to identify trends in clinical care and efficacy associated
    with the use of new innovations to treat pelvic floor disorders to
    ensure patient safety and better patient outcomes.
        The AUGS urges the Subcommittee to adopt the following language in
    the report accompanying the fiscal year 2021 Labor-HHS-Education
    appropriations bill to achieve these objectives.
        Pelvic Floor Disorders.--The Committee recognizes that Pelvic Floor
    Disorders, including such conditions as urinary incontinence,
    accidental bowel leakage and pelvic organ prolapse, have a large
    financial impact on individuals and society, and significant negative
    quality of life impact for more than 25 million women annually, in the
    USA alone. We urge NICHD, NIDDK and NIA to work together on the
    development of universally accepted disorder specific data sets and
    biorepositories for the purpose of research studies on patient outcomes
    of current and future therapies used to treat pelvic floor disorders
    and the pathogenesis of these conditions. The Committee requests that
    NICHD, NIDDK and NIA provide a report on current research and future
    initiatives to address pelvic floor disorders in the fiscal year 2022
    Congressional Justification and provide timely updates to the Committee
    on advances being made with respect to prevention, treatment and
    understanding the mechanisms of these conditions.
        Thank you in advance for your favorable consideration of this
    report language request and for your support for prioritizing research
    on pelvic floor disorders. Your leadership on this issue will provide
    hope to millions of women suffering from these conditions.

                                     ______

                    Prepared Statement of Andrews Kate  deg.
                       Prepared Statement of Kate Andrews
        My interest in more funding for research for RX and a cure for
    schizophrenia is needed desperately. Our adopted son was accepted to 3
    colleges in NC. He was a freshman attended NC State in Raleigh NC in
    November 2017. The campus police called our home at 11.00 p.m. to
    report our son was on campus grounds staring into the tunnel. He was
    staring and would not answer their questions--he was catatonic. And
    since that night our world was turned upside down, four hospital stays
    and three group homes, my husband and I have had a life where we would
    become angry, worried, frustrated, and depressed. Our son as of April 1
    has finally been stabilized. He left the group home on March 16, 2020.
    He is living in a tiny apartment from the housing authority. His
    disability was a god send, but when in the group home his allowance for
    clothing toiletries, and any recreation was 60.00 a month, and his cell
    phone is 40.00. This diagnosis is schizoaffective and he becomes
    delusion and manic without his multiple RX. He takes for his mental
    health. and takes RX to help with the many bad side effects of his
    antipsychotic medicine and his mood stabilizer...so scary to have to
    see your families be torn apart watching your child turn from a
    confident intelligent person to someone who barely can communicate. And
    all in their prime of life. Had just turned 19 when he had his
    psychotic break...he was so delusional he had his entire college paid
    for and attended less than 3 months. Schizophrenia is a debilitating
    disease and robs persons of fulfilling their hopes and dreams, without
    family support I would shutter to think where our son would be today,
    possibly homeless or incarcerated as so many schizophrenic are.
                                     ______

               Prepared Statement of the Animal Welfare Institute
        The Animal Welfare Institute appreciates the opportunity to submit
    testimony on fiscal year 2021 spending priorities for the U.S.
    Department of Health and Human Services. We are requesting report
    language for the Department pertaining to Protecting Animals With
    Shelter (Section 12502, Public Law 115-334) and pertaining to the post-
    research retirement of animals used in government financed experiments.
        protecting animals with shelter (section 12502 of the farm bill)
        When there is violence in the home, it can be directed at everyone-
    spouse or partners, children, elderly family members, and companion
    animals. Abusers are well aware of the bond between their victims and
    their pets. They exploit that bond to frighten, control, manipulate,
    and even ``punish'' their human victims.
        Unfortunately, few domestic violence survivors have access to
    shelters that can protect them and their pet; in fact, large numbers
    delay escaping out of fear for the safety of the pets left behind.
    Several surveys bear the grim statistics:
      --As many as 48 percent of the battered women reported they had
            delayed leaving a dangerous situation out of concern for their
            companion animals' safety.
      --Between 49 percent and 86 percent reported that their pets had been
            threatened, harmed, or killed by their partners.
      --85 percent of domestic violence shelters indicated that women
            coming to their facilities spoke of incidents of pet abuse.
        Congress has wisely sought to address this shortage of resources.
    Section 12502 of Public Law 115-334, the Agriculture Improvement Act of
    2018, authorizes a grant program to provide emergency and transitional
    shelter and housing options for domestic violence survivors with
    companion animals. It is urgent that Congress now appropriate the full
    authorized funding and direct the agencies involved to take all
    necessary steps to implement the program. If shelters and other service
    providers can help domestic violence survivors find a safe place for
    their companion animals, they will be better able be to bring everyone
    to safety. The PAWS provision will greatly increase their capacity to
    meet these critical needs. We respectfully request that the Committee
    reiterate its interest in having all departments involved in this grant
    program work together to ensure its speedy implementation.
        Requested Report Language: The Committee directs the Secretary of
    Health and Human Services to continue consultations with the Secretary
    of Agriculture, as well as with the Secretary of Housing and Urban
    Development and the Attorney General, and enter into any memoranda of
    understanding as needed, in order to finalize the requirements for
    grant application and implementation under Section 12502 of Public Law
    115-334, the Agriculture Improvement Act of 2018, to provide emergency
    and transitional shelter and housing options for domestic violence
    survivors with companion animals.
         post-research adoption of animals used in extramural research
        Animals used for laboratory testing deserve the opportunity to
    experience normal lives with families or through sanctuary care once
    they are no longer needed for any research protocol. Most animals used
    for research spend their lives in cages, often isolated from one
    another, and are forced to undergo procedures that produce trauma and
    suffering. Instead of needlessly killing them after their use in
    experiments is over, laboratories should give them a second chance. The
    retirement and adoption of research animals can be rewarding for the
    caretakers and scientists as well, who often want to see the animals
    moved to positive environments when no longer needed for research. NIH
    has instituted policies and procedures to facilitate the retirement of
    animals no longer needed for research, but that policy covers only NIH
    intramural research. We respectfully request that NIH be directed to
    extend this policy to NIH-funded extramural research.
        Requested Report Language: The Committee commends the National
    Institutes of Health and other agencies for instituting policies and
    procedures to facilitate the placement of animals no longer needed for
    research with families or nonprofit shelters or sanctuaries. This is a
    far more humane and less wasteful practice than euthanizing otherwise
    healthy animals. We note, however, that the NIH policy covers only NIH
    intramural research. Animals used in NIH-funded extramural research
    also should not be needlessly euthanized at the end of the experiment
    if they are determined to be healthy enough to be adopted or retired.
    The Committee directs NIH to require grantees receiving extramural
    funds from NIH for research using animals to implement post-research
    adoption policies that are at least as comprehensive as the NIH
    intramural policy. The committee requests that NIH provide a written
    update on this effort within a year.

        [This statement was submitted by Nancy Blaney, Director, Government
    Affairs, Animal Welfare Institute.]
                                     ______

                 Prepared Statement of the Arthritis Foundation
        On behalf of the 54 million adults and 300,000 children living with
    doctor-diagnosed arthritis in the United States, the Arthritis
    Foundation thanks Chairman Blunt and Ranking Member Murray for the
    opportunity to provide written testimony to the Appropriations
    Subcommittee on Labor, Health and Human Services (HHS), and Education
    and Related Agencies for fiscal year 2021. We respectfully request
    robust funding for the Centers for Disease Control and Prevention (CDC)
    Arthritis Program, and estimate full funding for the program is
    approximately $54 million.
        Arthritis affects 1 in 4 Americans and is the leading cause of
    disability in the United States, according to CDC. It limits the daily
    activities of over 23 million Americans and causes work limitations for
    40 percent of the people with the disease. This translates to over $300
    billion a year in direct and indirect costs. There is no cure for
    arthritis, and for some forms of arthritis like OA, there is no
    disease-modifying pharmaceutical therapy. Research is critical to build
    towards a cure, develop better treatments with fewer severe side
    effects, and identify biomarkers and therapies for types of arthritis
    for which none exist. A strong investment in public health research and
    programs is essential to making breakthroughs in treatments, finding a
    cure for arthritis, and for delivering those breakthroughs to the
    people who suffer from this debilitating disease.
        The CDC Arthritis Program is the only Federal program dedicated
    solely to arthritis. Today, the program provides grants to 13 states to
    support evidence-based disease management programs. The program aims to
    connect all Americans with arthritis to resources to help them manage
    their disease. Evidence-based programs like EnhanceFitness help keep
    older adults active, and have shown a 35 percent improvement in
    physical function, resulting in fewer hospitalizations and lower health
    costs compared to non-participants. In addition, Walk With Ease is an
    evidence-based group walking program that encourages people with
    arthritis to start walking and stay motivated to keep active. The
    program allows participants to meet a few times per week to receive
    health education on an arthritis or exercise-related topic following by
    stretching activities, and a group walk. A recent CDC-funded randomized
    controlled trial found that the program can help reduce arthritis
    symptoms, reduce disability, and improve strength and balance.
        Not only does the Arthritis Program provide resources to people
    with arthritis, it also supports data collection on the prevalence and
    severity of arthritis. Due to this support, we know that 24.9 percent
    of people in Missouri and 22.2 percent of people in Washington have
    doctor-diagnosed arthritis; about 44 percent and 43 percent,
    respectively, of people in those states report activity limitations due
    to arthritis.
        Given the high prevalence and severity of this disease, the
    Arthritis Program is woefully under-funded compared to the investment
    in other chronic diseases. From a historical perspective, funding for
    the program was cut by 25 percent in fiscal year 2015, bringing the
    fiscal year 2015 total down from $13 million to $9.5 million. As a
    result, program staff had to cut program activities between 10 and 50
    percent, with some eliminations, and were unable to make new
    investments in arthritis programs. While $1.5 million was restored in
    fiscal year 2016, the Arthritis Program is still not operating at its
    funding level of $13.3 million during fiscal year 2010. Combined with
    previous flat funding, the program has lost millions of dollars in
    purchasing power over the last decade.
        We estimate that a robust allocation for the Arthritis Program
    would total at least $54 million in fiscal year 2021. With this level
    of funding, the program would be able to:
      --Provide funding to states to fully operationalize a National
            Arthritis Program. Today, the CDC Arthritis Program funds only
            13 state programs around the country (AR, KS, MA, MN, MS, NH,
            NY, NC, OR, RI, UT, VA, and WA). These programs play a vital
            role in the dissemination of proven strategies and programs,
            and all states should receive funding to operate an arthritis
            program;
      --Expand national partnerships that are critical to promoting
            awareness, increasing primary provider referrals for non-
            pharmacologic management of chronic pain, and providing access
            to arthritis self-management and physical activity programs;
            and
      --Invest in robust data and intervention and prevention research to
            better understand arthritis.
        We thank the Subcommittee for its commitment to the health and
    wellbeing of all Americans. As you write the fiscal year 21 Labor-HHS-
    Education appropriations bill, we hope you will provide robust funding
    for the CDC Arthritis Program in order to continue investments that
    improve the lives of people with chronic diseases like arthritis.
    Please contact Vincent Pacileo, Director of Federal Affairs, at
    vpacileo@arthritis.org, with any questions.
                                     ______

        Prepared Statement of the Association for Career and Technical
                           Education and Advance CTE
        Chairman Blunt, Ranking Member Murray, and distinguished members of
    the subcommittee, on behalf of the Association for Career and Technical
    Education (ACTE), the nation's largest not-for-profit association
    committed to the advancement of education that prepares youth and
    adults for career success, and Advance CTE, the nation's longest-
    standing not-for-profit that represents State Directors and leaders
    responsible for secondary, postsecondary and adult Career Technical
    Education (CTE) across all 50 states and U.S. territories, we
    respectfully request that the subcommittee increase funding for the
    Perkins Basic State Grant program, administered by U.S. Department of
    Education's Office of Career, Technical, and Adult Education, to $1.963
    billion in the fiscal year 2021 Labor, Health and Human Services,
    Education, and Related Agencies appropriations bill. It is vital that
    Congress continues to build upon the recent increases to the
    Strengthening Career and Technical Education for the 21st Century Act
    (Perkins V) in order to fully support the implementation of the law and
    the 11.8 million learners it serves across the nation.\1\
    ---------------------------------------------------------------------------
        \1\ Perkins Collaborative Resource Network, Perkins Data Explorer,
    customized Consolidated Annual Report data. Retrieved from https://
    perkins.ed.gov/pims/DataExplorer.
    ---------------------------------------------------------------------------
        High-quality CTE programs are delivering real results. Across the
    country, CTE programs are preparing learners for promising career paths
    and giving employers and our economy a competitive edge. CTE programs
    provide unique opportunities for learners to engage with employers and
    participate in internships, apprenticeships and other meaningful on-
    the-job experiences. In addition, these programs produce strong
    outcomes for the learners they serve. The average high school
    graduation rate for students concentrating in CTE is 95 percent,
    compared to a national adjusted cohort graduation rate of 85
    percent.\2\ Additionally, students involved in CTE are far less likely
    to drop out of high school than other students, a difference estimated
    to save the economy $168 billion each year.\3\ Furthermore, those
    students are highly likely to continue their education--91 percent of
    high school graduates who earned two to three CTE credits enrolled in
    college.\4\
    ---------------------------------------------------------------------------
        \2\ Perkins Collaborative Resource Network, Perkins Data Explorer,
    customized Consolidated Annual Report data. https://perkins.ed.gov/
    pims/DataExplorer; U.S. Department of Education, Office of Elementary
    and Secondary Education, Consolidated State Performance Report, 2010-11
    through 2016-17.
        \3\ Kotamraju, P. Measuring the return on investment for CTE.
    Techniques: 28-31, 2011. Retrieved from https://files.eric.ed.gov/
    fulltext/EJ943149.pdf.
        \4\ U.S. Department of Education, National Center for Education
    Statistics, Data Point: Career and Technical Education Coursetaking and
    Postsecondary Enrollment and Attainment: High School Classes of 1992
    and 2004, 2016. Retrieved from https://nces.ed.gov/pubs2016/
    2016109.pdf.
    ---------------------------------------------------------------------------
        The outcomes for adult learners are also significant: 84 percent of
    adults concentrating in CTE programs either continued their education
    or were employed within 6 months of completing their program.\5\ In
    fact, 90 percent of Americans agree that apprenticeships and skills
    training programs prepare individuals for a good standard of living.\6\
    ---------------------------------------------------------------------------
        \5\ Includes only states that report data on adult CTE learners to
    the U.S. Department of Education. Perkins Collaborative Resource
    Network, Perkins Data Explorer, customized Consolidated Annual Report
    data. Retrieved from https://perkins.ed.gov/pims/DataExplorer/
    Performance.
        \6\ New America, Varying Degrees 2018: Executive Summary. Retrieved
    from https://www.newamerica.org/education-policy/reports/varying-
    degrees-2018/executive-summary/.
    ---------------------------------------------------------------------------
        Expanding funding for CTE programs will create a brighter future
    for communities--leading to more career options for learners, better
    results for employers, and increased growth for our economy. Investing
    in CTE programs provides substantial benefits for not just the students
    enrolled, but for states and communities across the country. In
    Wisconsin, taxpayers receive $12.20 in return for every dollar invested
    in the technical college system.\7\ Oklahoma's economy reaps a net
    benefit of $3.5 billion annually from graduates of the CareerTech
    System.\8\ Individuals who receive a certificate or degree from
    California Community Colleges almost double their earnings within 3
    years, \9\ while every dollar spent on secondary CTE students in
    Washington state leads to $26 in lifetime earnings and employee
    benefits.\10\ If we are serious about providing learners with the real-
    world skills, hands-on opportunities and real options for college and
    rewarding careers that come with CTE and making progress toward closing
    the skills gap, then there is no better time than now to invest $1.963
    billion in CTE State Grants; this would be a strong down payment on
    doubling the Federal investment in CTE State Grants by fiscal year
    2024, which is the long-term goal of our organizations.
    ---------------------------------------------------------------------------
        \7\ Wisconsin Technical College System, The Technical College
    Effect, 2016. Retrieved from https://www.wistechcolleges.org/sites/
    default/files/POSTER8.5x11-2016update2_0.pdf.
        \8\ Snead, M. C., The Economic Contribution of CareerTech to the
    Oklahoma Economy: Cost-Benefit Analysis of Career Majors (fiscal year
    2011), 2013. Retrieved from https://www.okcareertech.org/about/
    costbenefit-analysis-of-career-majors/cost-benefit-analysis-of-career-
    majorsfy-11-pdf.
        \9\ Foundation for California Community Colleges, California
    Community Colleges, n.d. Retrieved from https://foundationccc.org/
    Portals/0/Documents/NewsRoom/FactSheets/ccc-facts-figures.pdf.
        \10\ Workforce Training and Education Coordinating Board, Workforce
    Training Results 2020. Retrieved from https://www.wtb.wa.gov/wp-
    content/uploads/2020/01/2020-Dashboard.pdf.
    ---------------------------------------------------------------------------
        CTE programs prepare students for careers in in-demand fields and
    provide an affordable pathway to both a family-sustaining career and
    financial independence. Healthcare occupations, many of which require
    an associate degree or industry credential, are projected to grow 14
    percent by 2028--adding almost 2 million new jobs.\11\ Half of all STEM
    occupations, which offer students high-skilled, high-wage career
    opportunities, require less than a bachelor's degree.\12\ There are
    currently about 30 million ``good jobs''--jobs that pay a median income
    of $55,000 or more and require education below a bachelor's degree.\13\
    ---------------------------------------------------------------------------
        \11\ U.S. Department of Labor, Bureau of Labor Statistics,
    Occupational Outlook Handbook, Healthcare Occupations. Retrieved from
    https://www.bls.gov/ooh/healthcare/home.htm.
        \12\ Rothwell, J. The Hidden STEM Economy, Brookings Institution,
    2013. Retrieved from https://www.brookings.edu/research/the-hidden-
    stem-economy/.
        \13\ Georgetown University Center on Education and the Workforce,
    Good Jobs that Pay Without a BA, 2017. Retrieved from https://
    goodjobsdata.org/wp-content/uploads/Good-Jobs-wo-BA-final.pdf.
    ---------------------------------------------------------------------------
        Additionally, the demand for workforce credentials is growing. The
    number of individuals earning certificates or associate degrees in CTE
    fields, such as manufacturing, healthcare, and STEM, rose 71 percent
    from 2002 to 2012.\14\ Students can pursue these valuable credentials
    at community and technical colleges for a fraction of the cost of
    tuition at other institutions: $3,730, on average for the 2019-2020
    academic year.\15\
    ---------------------------------------------------------------------------
        \14\ U.S. Department of Education, Office of Planning, Evaluation
    and Policy Development, Policy and Program Studies Service, National
    Assessment of Career and Technical Education: Final Report to Congress,
    2014. Retrieved from https://www2.ed.gov/rschstat/eval/sectech/nacte/
    career-technical-education/final-report.pdf.
        \15\ College Board, Average published charges, 2018-19 and 2019-20.
    Retrieved from https://research.collegeboard.org/trends/college-
    pricing/figures-tables/average-published-charges-2018-19-and-2019-20.
    ---------------------------------------------------------------------------
        Highly-skilled workers deliver direct benefits to American
    employers through enhanced productivity and innovation; however, the
    increased demands on the workforce pipeline are a persistent barrier to
    economic growth. A projected three million workers are needed to fill
    infrastructure jobs in the next few years, including careers in
    construction, transportation and telecommunications.\16\ Meanwhile, 89
    percent of executives agree there is a talent shortage in the U.S.
    manufacturing sector, 5 percent higher than 2015 results.\17\ These
    industries still need talent, even in the current economic climate.
    ---------------------------------------------------------------------------
        \16\ Kane, J. W., and Tomer, A. Infrastructure skills: Knowledge,
    tools, and training to increase opportunity, Brookings Institution,
    2016. Retrieved from https://www.brookings.edu/research/infrastructure-
    skills-knowledge-tools-and-training-to-increase-opportunity/.
        \17\ Deloitte and the Manufacturing Institute, Skills Gap and the
    Future of Work Study, 2018. Retrieved from http://
    www.themanufacturinginstitute.org//media/E323C4D8F75A470E8C96D7
    A07F0A14FB/DI_2018_Deloitte_MFI_skills_gap_FoW_study.pdf; Deloitte and
    the Manufacturing Institute, The skills gap in U.S. manufacturing 2015
    and beyond, 2015. Retrieved from http://
    www.themanufacturinginstitute.org//media/
    827DBC76533942679A15EF7067A704CD.
    ashx.
    ---------------------------------------------------------------------------
        Funding Perkins V at adequate levels will ensure that educators can
    equip students with the skills they will need for in-demand fields.
    This will become increasingly pressing as the country continues to
    combat the current health pandemic and economic crisis. Already,
    healthcare jobs are projected to have the largest increase of any
    occupational sector.\18\ Filling these and other positions created, as
    well as ensuring that each individual is able to access the training
    needed for employment, is critical.
    ---------------------------------------------------------------------------
        \18\ U.S. Department of Labor, Bureau of Labor Statistics,
    Occupational Outlook Handbook, Healthcare Occupations. Retrieved from
    https://www.bls.gov/ooh/healthcare/home.htm.
    ---------------------------------------------------------------------------
        CTE programs can serve even more learners and employers--but only
    if they receive more resources. According to The Bureau of Labor
    Statistics Job Openings and Labor Turnover Survey (JOLTS) Highlights
    for January 2020, for 23 consecutive months, there were more open jobs
    in the U.S. than there were unemployed Americans.\19\ While the current
    economic forecast is unclear, the significant gaps for skilled workers
    remain; we anticipate that many workers will need to be reskilled to
    rejoin the economy. Learner demand for CTE programs, especially
    programs in in-demand sectors, is greater than supply. With current and
    anticipated demand growing, more resources are needed. And there's
    widespread support for CTE: 94 percent of parents approve of expanding
    access to CTE.\20\ However, a survey of school districts offering CTE
    found that the top barrier to offering CTE in high school was a lack of
    funding or the high cost of the programs.\21\ As the chart below
    demonstrates, between fiscal year 2004 and fiscal year 2020, funding
    for CTE State Grants declined by over $77 million dollars, the
    equivalent of $427 million inflation-adjusted dollars (i.e., 28 percent
    in inflation-adjusted dollars).
    ---------------------------------------------------------------------------
        \19\ U.S. Department of Labor, Bureau of Labor Statistics, Job
    Openings and Labor Turnover Survey (JOLTS) Highlights; January 2020.
    Retrieved from https://www.bls.gov/web/jolts/jlt_labstatgraphs.pdf.
        \20\ Hart Research Associates, Public School Parents on the Value
    of Public Education: Findings from a National Survey of Public School
    parents conducted for the AFT, September 2017. Retrieved from https://
    www.aft.org/sites/default/files/parentpoll2017_memo.pdf.
        \21\ U.S. Department of Education, National Center for Education
    Statistics, Career and Technical Education Programs in Public School
    Districts: 2016-17. Retrieved from https://nces.ed.gov/pubs2018/
    2018028.pdf.

        Taking a longer view, before fiscal year 2018, the investment in
    CTE State Grants had been relatively flat since 1991 without being tied
    to inflation, and the program's buying power had fallen by
    approximately $933 million in inflation-adjusted dollars--a 45 percent
    reduction over a quarter century.\22\
    ---------------------------------------------------------------------------
        \22\ U.S. Bureau of Labor Statistics, CPI Inflation Calculator.
    Retrieved from https://data.bls.gov/cgi-bin/cpicalc.pl.
    ---------------------------------------------------------------------------
        Congress recognized the need to begin to reverse this trend and
    from fiscal year 2018 to fiscal year 2020 provided an additional $175
    million for CTE State Grants, bringing the total investment to $1.283
    billion. While the past three budgets represented initial down payments
    to meet increased need, a significant, robust investment in CTE
    programs is still imperative to account for persistent underfunding,
    the lack of inflation-adjusted increases, and most importantly the
    overwhelming growth in demand for these programs from both learners and
    the American economy. Congress should build on the momentum from recent
    years and continue to strengthen the investment in CTE State Grants in
    fiscal year 2021. And, Americans agree: 93 percent of voters support
    increasing the investment in skills training.\23\
    ---------------------------------------------------------------------------
        \23\ ALG Research, Poll Finds Overwhelming Support for More Funding
    for Skills Training, 2019. Retrieved from https://
    www.nationalskillscoalition.org/news/press-releases/body/Poll-Finds-
    Overwhelming-Support-for-More-Funding-for-Skills-Training.pdf.
    ---------------------------------------------------------------------------
        Though we are in the midst of a public health crisis facing the
    country right now, and economic ramifications are likely, we
    respectfully still request this increase in Federal CTE funding. Now
    more than ever, individuals need access to upskilling and reskilling
    opportunities to be part of the evolving workforce, and CTE programs
    will be adapting, as always, to the needs of business and industry in
    the current economy. We applaud their commitment to growing our
    investment in Perkins V, and we urge the subcommittee to make CTE a top
    priority in the fiscal year 2021 Labor, Health and Human Services,
    Education, and Related Agencies appropriations bill.
        Thank you for your thoughtful consideration of our request. For
    more information or if you wish to discuss our request, please contact
    ACTE's Government Relations Manager Michael Matthews
    (mmatthews@acteonline.org) or Advance CTE Policy Associate Meredith
    Hills (mhills@careertech.org).
                                     ______

          Prepared Statement of the Association for Clinical Oncology
        The Association for Clinical Oncology (ASCO), the world's leading
    professional organization representing nearly 45,000 physicians and
    other professionals who treat people with cancer, thanks this
    subcommittee for its long-standing commitment to support federally
    funded research at the NIH and NCI. ASCO is extremely grateful for the
    $2.6 billion increase for the NIH in fiscal year 2020. This strong
    commitment to scientific discovery will help the research community
    continue current momentum and sustain our nation's position as the
    world leader in biomedical research. We are in an exciting and
    promising era of medical research; new discoveries are leading to major
    improvements in the way we care for patients with cancer, and every
    major medical breakthrough in cancer started with the NIH and NCI. ASCO
    appreciates this opportunity to provide the following recommendations
    for fiscal year 2021 funding to build on our nation's investment in
    biomedical research:
      --National Institutes of Health (NIH): $44.7 billion
      --National Cancer Institute (NCI): $6.928 billion
        --Beau Biden Cancer Moonshot Initiative: $195 million
      --Centers for Disease Control and Prevention's (CDC) Division of
            Cancer Prevention and Control (DCPC): $559 million
        --Cancer Registries Program: $70 million
        Robust, sustained funding for the NIH and NCI will continue the
    extraordinary progress towards understanding the cause of cancer, its
    progression, and our ability to prevent, diagnose and treat this
    disease.
    The NIH: A Good Investment
        In fiscal year 2019, the NIH provided over $30 billion in
    extramural research to scientists in all 50 states and the District of
    Columbia.\1\ NIH research funding also supported more than 475,000 jobs
    and generated nearly $81 billion in economic activity last year.\2\
    Federal funding supported nearly a quarter of the studies highlighted
    in ASCO's 2020 Clinical Cancer Advances report, our 15th annual report
    on progress against cancer. Some of the most notable federally funded
    advances highlighted in the 2020 report are:
    ---------------------------------------------------------------------------
        \1\ National Institutes of Health; https://www.nih.gov/about-nih/
    what-we-do/impact-nih-research.
        \2\ United for Medical Research; https://
    www.unitedformedicalresearch.org/wp-content/uploads/2019/04/NIHs-Role-
    in-Sustaining-the-US-Economy-FY19-FINAL-2.13.2020.pdf.
    ---------------------------------------------------------------------------
      --Neoadjuvant combinations of immunotherapies have paved the way for
            more successful, less invasive surgeries for patients with
            advanced melanoma
      --Targeted therapies now provide alternatives to immediate surgery in
            the treatment of renal cell carcinoma
      --Upfront systemic treatments make surgery possible for more patients
            with pancreatic cancer
      --Long-term data now shows that vaccines against the human
            papillomavirus are reducing cervical cancer risk in real-world
            settings
      --Biomarker-driven treatment approaches have opened the door to
            personalized care for metastatic pancreatic cancer
      --Combinations of different types of therapies now suggest that
            survival can be extended for many patients without increasing
            toxicity
      --A growing number of targeted therapies offer hope to patients with
            difficult to treat cancers
        Sustained and steady funding of the NIH and NCI is critical to
    maintaining the pace of scientific discovery and continued progress
    against cancer, such as the advances outlined above.
        Over the last few years, you have prioritized Federal funding for
    biomedical research, increasing the NIH budget by $2.6 billion in
    fiscal year 2020, and providing a combined increase of $11.6 billion in
    the last five fiscal years. This investment has allowed the agency to
    regain some of the ground that was lost over a decade of flat funding.
    The funding levels we are requesting for fiscal year 2021 would allow
    for meaningful growth above biomedical inflation for the first time in
    over a decade and would allow the extraordinary progress of the last
    few years to continue. Failure to continue the historic investment in
    research places health outcomes, scientific leadership, and economic
    growth at risk.
    The NCI: More Support Needed
        Cancer is the second leading cause of death in the United States,
    and it is estimated that more than 1.8 million Americans will be
    diagnosed with cancer this year, with an estimated 606,000 succumbing
    to the disease. Additionally, cancer costs the U.S. economy more than
    $216 billion annually in direct treatment costs and lost
    productivity.\3\
    ---------------------------------------------------------------------------
        \3\ American Cancer Society; https://www.cancer.org/research/
    cancer-facts-statistics/all-cancer-facts-figures/cancer-facts-figures-
    2019.html.
    ---------------------------------------------------------------------------
        ASCO thanks you for your continued inclusion of funding for the
    Beau Biden Cancer Moonshot Initiative in fiscal year 2020. The Cancer
    Moonshot Initiative continues its work towards modernizing clinical
    trials, establishing a direct patient engagement network, developing a
    national cancer data ecosystem, continuing advances in precision
    oncology, developing effective immunotherapies for a broader array of
    cancers, including pediatrics, and creating an adult immunotherapy
    network. Adequate funding is needed to make progress in each of these
    areas over the coming years. Funding for this Initiative should
    supplement rather than supplant predictable increases in the underlying
    NCI budget. In fact, funding for the Initiative peaked at $400 million
    in fiscal year 2019, and dropped to $195 million in fiscal year 2020.
        The NCI is the largest funder of cancer research in the world, and
    the majority of its funding goes directly towards supporting research
    at NCI and at cancer centers, hospitals, community clinics, and
    universities across the country. While the NCI has received modest
    funding increases over the last few years, funding has not kept up with
    the growing number of research grants and applications as compared to
    other NIH Institutes or Centers. In fact, over the last 5 years R01
    grant applications submitted to the NCI rose by 50 percent, while
    funding for NCI only grew by 20 percent over the same time period. This
    means NCI is funding a smaller proportion of grant applications
    compared to previous years--only 8 percent of applications received
    funding in 2019 compared to 28 percent in 1997. Even after counting the
    additional funding NCI has received through the Cancer Moonshot
    Initiative, NCI's budget has simply not kept up with scientific
    opportunity. The funding requests submitted today would give the NCI
    the ability increase the grants its able to fund to 15 percent of those
    submitted.\4\
    ---------------------------------------------------------------------------
        \4\ National Cancer Institute; https://www.cancer.gov/about-nci/
    budget/plan/2020-annual-plan-budget-proposal.pdf.
    ---------------------------------------------------------------------------
    Bringing the Research to the Patient
        NIH-funded translational research and clinical trials have
    significantly improved the standard of care in many diseases. Clinical
    trials and translational research yield insight critical to the
    development of targeted therapies, which identify patients most likely
    to benefit and help patients who will not benefit avoid the cost and
    pain of treatment unlikely to help them. This is where science becomes
    practice-changing for patients in America.
        ASCO has developed the Targeted Agent and Profiling Utilization
    Registry (TAPUR\tm\) Study, which provides access to targeted therapies
    for patients age twelve and older and who have been identified as
    candidates for benefitting from those treatments because of a promising
    tumor biomarker target identified in their cancer. The TAPUR Study
    evaluates use of these molecularly targeted anti-cancer drugs and
    collects data on clinical outcomes. As of March 2020, there are over
    1800 participants enrolled in the TAPUR Study at 117 sites in 21
    states. Without Federal investment spurring the pipeline of new cancer
    treatments, studies such as TAPUR would not be possible.
        To maintain access to research for cancer patients, ASCO urges a
    substantial increase in funding for the National Clinical Trials
    Network (NCTN) and NCI Community Oncology Research Program (NCORP).
    Just last year, the NCI awarded 53 grants to researchers in the NCORP
    community, at 46 sites, who have assembled more than 1,000 affiliates
    across the country to conduct research. The NCORP network now covers 44
    states DC.\5\ An increase in NCI's budget would enable the Institute to
    maintain or increase the number of accruals to trials and cover the
    cost of conducting the research.
    ---------------------------------------------------------------------------
        \5\ National Cancer Institute; https://ncorp.cancer.gov/news/2019-
    08-19.html.
    ---------------------------------------------------------------------------
        Finally, we are in an unprecedented era for cancer research, with
    more targeted and patient-specific therapies in development. However,
    access to clinical trials remains a wide-spread issue for many patient
    populations. Specifically, underserved communities, including patients
    on Medicaid face several barriers when trying to access clinical
    trials. Diversity and generalizability of cancer clinical trials is
    crucial for making trial results applicable more broadly and to ensure
    positive clinical outcomes for all patients. We hope to continue our
    work with Congress, NCI and the Centers for Medicare and Medicaid
    Services (CMS) to improve access to clinical trials for
    underrepresented patient populations.
    Cancer Registries: Harnessing Data
        Accessible data is crucial to understanding cancer at a broader
    level. ASCO joins the broader cancer community in requesting $559
    million for the Centers for Disease Control and Prevention's (CDC)
    Division of Cancer Prevention and Control (DCPC), and $70 million for
    the CDC's Cancer Registries Program. Cancer registries are a critical
    tool for providers and researchers, providing unparalleled cancer
    surveillance, identifying emerging trends amongst different patient
    cohorts, illustrating the impact of early detection, and showing the
    impact of treatment advances on cancer outcomes. Registries allow
    providers to collect data in real time and improve cancer research,
    public health interventions and treatment protocols. While we work
    towards greater trials inclusion, registries help ensure we have data
    from underrepresented patient cohorts such as racial and ethnic
    minorities, women and children, and rural populations.
    Mitigating the Effects of COVID-19 and Continuing the Work Towards
            Cures
        Modern cancer research delivers new treatments to patients faster
    than ever, thanks to continuing innovation in research and regulatory
    infrastructure. Between August 2018 and July 2019, the FDA approved 17
    new anti-cancer therapeutics. Since 1991 the cancer mortality rate has
    declined by 29 percent, and between 2016 and 2017 we experienced the
    largest single-year drop in cancer mortality ever reported, a 2.2
    percent decline. Today two out of three people with cancer will leave
    at least 5 years past diagnosis and there are 16.9 million American
    cancer survivors.\6\ The investments Congress has made in cancer
    research has helped make this progress possible.
    ---------------------------------------------------------------------------
        \6\ ASCO; https://www.asco.org/research-guidelines/reports-studies/
    clinical-cancer-advances-2020.
    ---------------------------------------------------------------------------
        While we have made great progress in the field of cancer care, we
    are in an unprecedented public health crisis that has affected all
    corners of our healthcare system. Many labs across the country have had
    to suspend or adjust their research as a result of the COVID-19
    pandemic. Individuals in the research community are at risk of losing
    their employment as well as their current research progress.
    Unfortunately, the longer our clinical trials network is stagnant, the
    more patients will miss out on potentially life-saving treatments. Once
    this crisis subsides, flexibility and robust funding will be critical
    to get the nation's trials and research enterprise fully running again.
    It is vital that Congress acts now to provide relief in the form of
    continued funding for the research community to ensure sustained
    advances in healthcare therapies.
        To continue the momentum gained over the last few years, lawmakers
    and researchers will need to work together to mitigate COVID-19 related
    disruptions to research and restore momentum across the nation's
    medical research network. Therefore, I urge you to prioritize the
    important role NIH and NCI play in medical innovation and economic
    growth by protecting and strengthening federally funded research in
    fiscal year 2021.
        ASCO again thanks the subcommittee for its continued support of
    cancer patients in the U.S. through funding for the NIH and NCI. We
    look forward to working with all members of the subcommittee on an
    fiscal year 2021 budget that continues to advance U.S. cancer research.
    Please contact Kristin Palmer at Kristin.Palmer@asco.org with any
    questions.

        [This statement was submitted by Monica Bertagnolli, MD, FASCO,
    Chair,
    Association for Clinical Oncology.]
                                     ______

        Prepared Statement of the Association for Psychological Science
            aps recommendations for fiscal year 2021 appropriations
    _______________________________________________________________________

      --As a member of the Ad Hoc Group for Medical Research, APS
            recommends at least $44.7 billion for NIH in fiscal year 2021.
            This would be a $3 billion increase over NIH's program level
            funding in fiscal year 2020. This funding level would allow for
            meaningful growth above inflation in the base budget that would
            expand NIH's capacity to support promising science in all
            disciplines beyond the directed funding included in the 21st
            Century Cures Act.
      --APS asks the Committee to continue to engage with NIH regarding
            NIH's redefinition of clinical trials to include basic research
            and asks the Committee to include strong and direct fiscal year
            2021 report language to reject this redefinition. The Committee
            included very direct report language in the fiscal year 2018
            Omnibus directing NIH to ``delay enforcement of the new
            policy'' and ``consult with the basic research community to
            determine reporting standards best suited to this kind of
            research.'' However, NIH is choosing to ignore the intent of
            the Committee, and is continuing to move forward with a policy
            that reclassifies a significant amount of basic research as a
            clinical trial and subjects this research to the added
            regulations and cost of clinical trials. APS encourages NIH to
            develop a compromise, in collaboration with the behavioral
            science research community, which encourages registration and
            reporting of research but does not require applications to go
            through clinicaltrials.gov or be called a clinical trial.
      --APS asks Congress to urge NIH to establish an advisory panel to
            review and recommend programs and structures that will result
            in a stronger basic, applied, and clinical behavioral science
            research and training enterprise at NIH in recognition of the
            central role of behavior in health. Behavior is involved in the
            development, treatment, or prevention of virtually every public
            health issue facing this Nation, including the ongoing
            coronavirus pandemic and other viruses and diseases, opioid
            addiction, cancer, diabetes, mental illness, violence,
            traumatic brain injury, and alcoholism.
      --Finally, APS urges the Committee to favorably consider the requests
            of the Psychological Clinical Science Accreditation System
            (PCSAS) to urge the modification of HRSA and National Health
            Service Corps regulations to permit the graduates of PCSAS-
            accredited schools to be eligible for employment in these
            programs. APS believes that the strong emphasis on science in
            PCSAS accreditation offers promise of improved prevention and
            treatment interventions which will strengthen HRSA and the
            National Health Service Corps programs.
    _______________________________________________________________________

        Chairman Blunt and Members of the Subcommittee, thank you for the
    opportunity to provide testimony as you consider funding priorities for
    fiscal year 2021. I am Sarah Brookhart, Executive Director of the
    Association for Psychological Science (APS). APS is a nonprofit
    organization dedicated to the advancement of scientific psychology
    nationally and internationally. Mr. Chairman, APS recognizes and
    appreciates your leadership and the leadership of this Subcommittee in
    supporting public health research.
        funding for the national institutes of health and policy issues
        As previously noted, APS recommends an fiscal year 2021 funding
    level of $44.7 billion for NIH, which would enable real growth over
    health research inflation as an important step to ensuring stability in
    the Nation's research capacity over the long term. The Administration's
    request of $38.7 billion in fiscal year 2021, translating to a $3.0
    billion cut, is reckless and shortsighted. Cuts to NIH would affect
    every American, including patients, their families, researchers, and
    communities where NIH investment spurs economic growth. In addition to
    funding priorities, APS is concerned about several policy issues at
    NIH.
    Clinical Trials Definition
        APS continues to be concerned that NIH is moving forward with the
    implementation of a new definition of clinical trials that encompasses
    significant amounts of basic research with humans. This NIH action
    ignores over 3,500 comments critical of this change, the opposition of
    35 current and former members of NIH Advisory Councils (as conveyed in
    a letter to Director Collins), and concerns expressed by the Committee
    in its fiscal year 2018 Conference report language. Basic research by
    definition is aimed at furthering knowledge about underlying processes
    and conditions involved in a particular phenomenon. Clinical trials are
    explicitly designed to test the safety and effectiveness of treatment
    or prevention interventions on health outcomes. The new definition of
    clinical trial encompasses basic research studies which are not
    traditionally considered to be a clinical trial by NIH or by the
    scientific community. With this definition, NIH subjects entire areas
    of basic research to inappropriate and unnecessary requirements that
    add significantly to the cost and time of each project and also create
    a significant economic burden for university and government review and
    training programs. To help reverse this policy change, we urge the
    following fiscal year 2021 report language in the NIH Office of the
    Director:
        Clinical Trials Policy.--The Committee supports the NIH delay of
    implementation of registering and reporting requirements for basic
    experimental studies with humans and notes that the fiscal year 2020
    Conference Agreement asked NIH to continue to work with the basic
    research community to achieve a balanced registration and reporting
    strategy that meets the interests of study participants, investigators,
    and taxpayers. The NIH policy to require all basic research involving
    humans to register and apply for funding as a clinical trial has been
    objected to by the community, as it creates additional red tape and
    costs that are unnecessary to meet the shared goal of transparency. NIH
    is directed to not classify basic research involving humans as clinical
    trials and to work with the community to develop an alternative
    registering and reporting system that will meet the shared goals of
    transparency and oversight. The Committee further requests a report
    that describes the new plan within 60 days of this bill being enacted
    into law.
    Behavioral Science at NIH
        The NIH mission is to ``seek fundamental knowledge about the nature
    and behavior of living systems and the application of that knowledge to
    enhance health, lengthen life, and reduce illness and disability.''
    However, increasingly, APS has concerns about the status of behavioral
    science at NIH, specifically regarding the continued disparity between
    the central role of behavior in all areas of health and the low level
    of direct support for basic and applied behavioral science research and
    training at NIH. APS therefore requests that the following language be
    included in your report directing the Director of NIH to convene a
    special advisory panel of behavioral scientists and other scientific
    community experts to complete an assessment providing recommendations
    on how to better integrate and realize the benefits to overall health
    from behavioral research at NIH:
        Behavioral Research.--The Committee believes that a more robust and
    focused NIH commitment to behavioral science research and training
    would yield significant improvements to the Nation's health due to the
    important connections between behavior and health. Most of the leading
    public health issues facing our nation-including cancer, addiction,
    heart disease, mental illness, diabetes, violence, and AIDS--are rooted
    in individual and social behavior, yet behavioral science is
    decentralized across NIH's institutes and the NIH commitment to manage
    and directly fund this important research is limited. The Committee
    therefore requests that the Director convene a special advisory panel
    of behavioral scientists and other community experts to complete an
    assessment providing recommendations on how to better integrate and
    realize the benefits to overall health from behavioral research at NIH.
    The Committee requests that this assessment be finalized before the end
    of fiscal year 2021 and be submitted to Congress.
        APS notes that the ongoing coronavirus pandemic provides a key
    illustration of the important connections between behavior and health.
    Basic behavioral science research informs relevant topics ranging from
    perceptions of risk and decisionmaking to individual and group social
    processes and behavior. Psychological scientists study the science of
    behavior change and how to encourage individuals to adopt behavioral
    practices or adapt existing ones. Clinical psychological scientists
    examine issues of mental illness, which may be widespread in emergency
    contexts. Behavioral science can also determine ways to implement
    behavior-based interventions to help contain the spread of the virus.
    APS believes that the scientific community would be better prepared to
    study, understand, predict, and guide behavior related to the
    coronavirus if behavioral science research and funding were better
    supported and centralized at NIH.
             updating hrsa and national health service regulations
        APS urges the Committee to favorably consider the requests of the
    Psychological Clinical Science Accreditation System (PCSAS) to urge the
    modification of HRSA and National Health Service Corps regulations to
    permit the graduates of PCSAS accredited schools to be eligible for
    employment in these programs. APS believes that the strong emphasis on
    science in PCSAS accreditation offers promise of improved prevention
    and treatment interventions which will strengthen HRSA and the National
    Health Service Corps programs. Prior to 2012, the American
    Psychological Association (APA) was the only accrediting body for
    clinical psychology programs, and therefore many agency regulations are
    outdated and refer to the program eligibility need for APA
    accreditation. This historical artifact needs to be updated for many
    programs, including those of HRSA and the National Health Service
    Corps. The language needed to urge these changes follows:
        Health Workforce Eligibility Requirements.--The Committee notes
    that the eligibility requirements for the Behavioral Health Workforce
    and Training Program and the Graduate Psychology Education Program need
    to be updated for accreditation changes that have occurred since the
    eligibility requirements were established. The eligibility requirements
    of these two programs require that applicants must be accredited by
    accrediting organizations recognized by the Department of Education.
    This fails to recognize the well-established and respected Council for
    Higher Education Accreditation (CHEA), which has 3,000 university
    members and accredits over 60 different accrediting bodies. In
    September 2012, CHEA recognized the Psychological Clinical Science
    Accreditation System (PCSAS), which has since that date has accredited
    43 clinical psychological doctoral programs which are all recognized to
    be among the 50 top programs in clinical psychology in the country. We
    note that the Department of Veterans Affairs recognized PCSAS in 2016.
    That is, PCSAS is already federally recognized. In order to insure that
    HRSA's health workforce programs continue to have access to the best
    qualified applicants, including those who graduate from PCSAS programs,
    the Committee urges HRSA to make administrative accommodations to
    accomplish this necessary update similar to the accommodations HRSA has
    provided for other similarly situated professions.
        Clinical Psychological Training for Public Health Service Corps.--
    The Committee supports the review by the Surgeon General's office to
    update HHS regulations to permit the graduates of the 43 doctoral
    programs in clinical psychology accredited by the Psychological
    Clinical Science Accreditation System (PCSAS) to be employed by the
    Public Health Service Corps. This update is necessary as PCSAS was
    recognized in September 2012 by the Council for Higher Education
    Accreditation (CHEA) and now accredits 43 programs that are among the
    highest ranked clinical psychology program in the country. The Veterans
    Administration, the Association of Psychological Postdoctoral and
    Internship Centers, and others have already updated their regulations
    to permit the employment of the graduates of PCSAS accredited programs.
    The Committee urges that the Surgeon General's office finalize and
    implement these changes as soon as possible.
                             summary and conclusion
        Chairman Blunt, again we wish to thank the Subcommittee for its
    past leadership. We believe that reducing barriers to research and
    training in behavioral science is warranted by the central role of
    behavior in many of our most pressing health problems and by the
    enormous potential of psychological science and other behavioral
    science disciplines to reduce the suffering experienced by the millions
    of people with behavior-based conditions. APS shares your commitment to
    addressing the health needs of the Nation and appreciates the
    opportunity to provide this testimony.

        [This statement was submitted by Sarah Brookhart, Executive
    Director,
    Association for Psychological Science.]
                                     ______

       Prepared Statement of the Association for Research in Vision and
                                 Ophthalmology
                               executive summary
        The Association for Research in Vision and Ophthalmology (ARVO), on
    behalf of the vision research community, thanks Congress, especially
    the House and Senate Appropriations Subcommittees on Labor, Health and
    Human Services, Education, and Related Agencies (LHHS), for the strong
    bipartisan support for the National Institutes of Health (NIH) funding
    increases from fiscal years 2016 through fiscal year 2020. The $11.6
    billion NIH increase has helped the agency regain some of the ground
    lost after years of effectively flat budgets. ARVO also thanks Congress
    for the bipartisan agreements that provide supplemental appropriations
    for NIH as the research community responds to COVID-19.
        ARVO urges Congress to continue this support and urges Congress to
    appropriate $44.7 billion for the NIH in fiscal year 2021, a $3 billion
    or 7.2 percent increase over the fiscal year 2020 program level and
    allowing for--
      --meaningful growth above inflation in the base budget to support
            promising science across all NIH Institutes and Centers;
      --funding from the Innovation Account established through the 21st
            Century Cures Act, which would supplement NIH's base budget, as
            intended, through dedicated funding for specific programs and
            funding for early-stage investigators.
        Due to the strain COVID-19 is placing on the research
    infrastructure and strict limits of the fiscal year 2021 discretionary
    spending caps, ARVO supports bipartisan proposals to exempt NIH from
    the fiscal year 2021 caps. ARVO also requests that the LHHS bill is
    structured to facilitate emergency funding, as necessary, to maintain
    the momentum of research emerging from past NIH investment such that
    the return-on-investment is fully realized with new diagnostics and
    therapies.
        ARVO also urges Congress to appropriate $875 million for the
    National Eye Institute (NEI), a $51 million or 6.2 percent increase
    over enacted fiscal year 2020. The NEI is the world leader in sight-
    saving and vision-restoring research. Congress must ensure robust NEI
    funding to continue to address the challenges of The Decade of Vision
    2010-2020--as recognized by Congress in H. Res. 366 in 2009--which
    include an aging population, disproportionate risk/incidence of eye
    disease in fast-growing minority populations, and the impact on vision
    from numerous chronic diseases and their treatments/therapies.
        Despite the total fiscal year 2016-2020 funding increases of $146
    million, NEI's enacted fiscal year 2020 budget of $824.1 million is
    just 21 percent greater than the pre-sequester fiscal year 2012 budget
    of $702 million. Averaged over the eight fiscal years, the 2.6 percent
    annual growth rate is less than the average annual biomedical inflation
    rate of 2.8 percent, thereby eroding purchasing power, which in fiscal
    year 2019 was below that of fiscal year 2012 and equivalent to that in
    fiscal year 2000. Maintaining the momentum of vision research is vital
    to vision health, as well as overall health and quality of life. Since
    the U.S. is the world leader in vision research and training the next
    generation of vision scientists, the health of the global vision
    research community is also at stake.
        ARVO recognizes that due to the pandemic, the NEI now faces
    additional challenges, as both the working-age population and students
    may potentially rely exclusively on electronic devices and e-learning
    platforms well into our new normal. As increased rates of myopia, dry
    eye, and eye strain are associated with lengthy exposure to these
    devices, NEI research will be instrumental in ensuring eye health is
    continually prioritized throughout the continuum of life.
            nei leads in genetic and regenerative medicine research
        The NEI has been a leader in genetics/genomics research and
    regenerative medicine.
      --Genetics/Genomics: Vision researchers worldwide participating in
            NEI's Glaucoma Genetics Collaboration Heritable Overall
            Operational Database (NEIGHBORHOOD) Consortium have identified
            133 genetic variants that predict within 75 percent accuracy a
            person's risk for developing glaucoma related to elevated
            intraocular pressure (IOP). Among the 133 variants, 68 had not
            been previously linked to IOP, and their loci point to cellular
            processes, such as lipid metabolism and mitochondrial function,
            that contribute to IOP. By understanding these cellular
            processes that can increase IOP and cause optic nerve damage,
            clinicians may be able to make an earlier diagnosis and
            researchers may be able to develop neuroprotective therapies to
            potentially halt disease progression.
      --NEI-funded research has also made discoveries of dozens of rare eye
            disease genes possible, including the discovery of RPE65, which
            causes congenital blindness called Leber congenital amaurosis
            (LCA). As of late 2017, NEI's initial efforts led to a
            commercialized, Food and Drug Administration (FDA)-approved
            gene therapy for this condition. These gene-based discoveries
            are forming the basis of new therapies that treat the disease
            and potentially prevent it entirely. Success in this field is
            driving now similar promising research for the most common
            blinding diseases, such as Age-related macular degeneration
            (AMD).
      --Regenerative Medicine: NEI is at the forefront of regenerative
            medicine with its Audacious Goals Initiative (AGI) for
            Regenerative Medicine, which launched in 2013 with the goal of
            restoring vision. Initially asking a broad constituency of
            scientists within the vision community and beyond to consider
            what could be done if researchers employed this new era of
            biology, the AGI currently funds major research consortia that
            are developing innovative ways to image the visual system.
            Researchers can now look at individual nerve cells in the eyes
            of patients in an examination room and learn directly whether
            new treatments are successful. Another consortium is
            identifying biological factors that allow neurons to regenerate
            in the retina. In addition, the AGI is gathering considerable
            momentum to develop disease models that may result in clinical
            trials for therapies within the next decade.
      --In late 2019, NEI began a first-in-human clinical trial that tests
            a stem cell-based therapy from induced pluripotent stem cells
            (iPSC) to treat geographic atrophy, also known as the ``dry''
            form of Age-related Macular Degeneration (AMD), the leading
            cause of vision loss among people age 65 and older. This trial
            converts a patient's own blood cells to iPSCs, which are then
            programmed to become retinal pigment epithelial (RPE) cells.
            RPE cells nurture and keep alive the photoreceptor cells
            necessary for vision but die in geographic atrophy causing the
            loss of photoreceptors and vision and cannot be replaced by the
            retina itself. The new therapy replaces dying RPE with iPSC-
            derived RPE cells keeping remaining photoreceptors alive and
            thereby stopping the loss of vision.
           nei funding demonstrates signifigant return on investment
        Optical coherence tomography (OCT) is a technology developed with
    Federal research funding through the NIH, which has led to significant
    cost savings by helping to diagnose conditions that lead to vision loss
    among patients more efficiently. In 2017, ARVO shared the story of OCT,
    including the significant associated cost savings:
      --$9 billion: Medicare savings from clinicians using OCT to optimize
            the injection schedule of anti-VEGF drugs for patients with
            wet-AMD
      --$2.2 billion: Wet-AMD patient savings from reduced spending on drug
            copays
      --$0.4 billion: Total investment over 20 years made by NIH and NSF to
            invent and develop the technology
      --2,100%: Return on taxpayer investment [http://www.ajo.com/article/
            S00029394(17)30419-1/fulltext]
      congress must robustly fund the nei as it addresses the increasing
                  burden of vision impairment and eye disease
        NEI's fiscal year 2020 enacted budget of $824.1 million is less
    than 0.5 percent of the $167 billion annual cost (inclusive of direct
    and indirect costs) of vision impairment and eye disease, which was
    projected in a 2014 Prevent Blindness study to grow to $317 billion--or
    $717 billion in inflation-adjusted dollars--by year 2050. Of the $717
    billion annual cost of vision impairment by year 2050, 41 percent will
    be borne by the Federal Government as the Baby-Boom generation ages
    into the Medicare program. A 2013 Prevent Blindness study reported that
    direct medical costs associated with vision disorders are the fifth
    highest--only less than costs associated with heart disease, cancers,
    emotional disorders, and pulmonary conditions. The U.S. is spending
    only $2.50 per-person, per-year for vision research, while the cost of
    treating low vision and blindness is at least $6,680 per-person, per-
    year. [http://costofvision.preventblindness.org/].
        In a May 2016 JAMA Ophthalmology article, NEI-funded researchers
    reported that the number of people with legal blindness will increase
    by 21 percent each decade to 2 million by 2050, while best-corrected
    visual impairment will grow by 25 percent each decade, doubling to 6.95
    million people--with the greatest burden affecting those 80 years or
    older. [http://jamanetwork.com/journals/jamaophthalmology/article-
    abstract/2523780?resultClick=1].
        Investing in vision health is an investment in overall health.
    NEI's breakthrough research is a cost-effective investment, since it
    leads to treatments and therapies that may delay, save, and prevent
    health expenditures. It can also increase productivity, help
    individuals to maintain their independence, and generally improve the
    quality of life--as vision loss is associated with increased depression
    and accelerated mortality.
        In summary, ARVO requests fiscal year 2021 NIH funding of at least
    $44.7 billion and NEI funding of $875 million. We also thank the
    Subcommittee for the opportunity to submit this written testimony,
    especially as it assesses current and future challenges associated with
    the COVID-19 pandemic.
        The Association for Research in Vision and Ophthalmology (ARVO) is
    the largest eye and vision research organization in the world. Members
    include nearly 12,000 eye and vision researchers from over 75
    countries. ARVO advances research worldwide into understanding the
    visual system and preventing, treating and curing its disorders.
                                     ______

      Prepared Statement of the Association of American Cancer Institutes
        The Association of American Cancer Institutes (AACI), representing
    100 premier academic and freestanding cancer centers across the nation,
    appreciates the opportunity to submit this statement for consideration
    by the subcommittee. Jennifer Pegher, Executive Director of AACI,
    submits this request for the Department of Health and Human Services
    budget for the National Institutes of Health (NIH) as the subcommittee
    aims to begin considering fiscal year 2021 funding. AACI requests a $3
    billion increase for the NIH for fiscal year 2021, bringing the
    recommended funding level for the NIH to $44.7 billion. This proposed
    level of NIH funding would ensure that academic cancer centers
    conducting lifesaving research can continue to discover and deliver new
    therapies for patients with cancer.
                              aaci cancer centers
        AACI cancer centers are beacons of discovery, largely funded by the
    NIH and National Cancer Institute (NCI). In order to ensure continued
    progress, these agencies rely on stable, predictable Federal funding to
    invest in groundbreaking cancer research.
        Cancer centers develop and deliver state-of-the-art therapies and
    provide comprehensive care, from prevention to survivorship, to
    patients. These centers are at the forefront of the national effort to
    eradicate cancer, yet progress in cancer research is complex and time-
    intensive. However, the pace of discovery and translation of novel
    basic research to new therapies could be accelerated if researchers
    could count on an appropriate and predictable investment in Federal
    cancer funding.
        According to the American Cancer Society, the mortality rate from
    cancer in the United States has declined 29 percent since its peak in
    1991. This translates to more than 2.9 million deaths avoided between
    1991 and 2017--progress tied to the commitment of Congress to fund the
    NIH and NCI. AACI appreciates the commitment of Congress to steadily
    increase NIH funding since fiscal year 2013. We hope Congress will
    continue that commitment in fiscal year 2021.
        With excitement mounting about the scientific opportunities ahead
    and our potential to leverage the resulting advances to benefit cancer
    patients nationwide, it is imperative that Congress robustly funds the
    agencies responsible for advancing cancer research. The broad portfolio
    of science supported by the NIH and NCI is essential for improving our
    basic understanding of cancer and has contributed to the health and
    well-being of Americans.
                the president's fiscal year 2021 budget proposal
        AACI cancer centers believe the partnership between the Federal
    Government and academic cancer centers is critical, and cancer centers
    continue to make strides in biomedical research thanks to the support
    of the Federal Government. Without such support, research projects with
    the potential to discover breakthrough therapies would not be possible.
        The drastic cuts to the NIH and NCI outlined in the fiscal year
    2021 budget proposed by President Trump on February 10 would be a major
    setback for cancer research. We believe the proposed, roughly $3
    billion, cut to the NIH budget is a step in the wrong direction. In
    order to sustain and accelerate progress against cancer, we must
    continue to increase NIH funding.
                                    payline
        Uncertainty surrounding research project grants (R01s) from year to
    year and a decline in cancer center resources often drives promising
    scientists to explore opportunities abroad or outside of the biomedical
    research community. For most academic cancer centers, the majority of
    NCI grant funds are used to sustain shared core resources that are
    essential to basic, translational, clinical, and population cancer
    research, or to provide matching dollars that allow departments to
    recruit new cancer researchers to a university and support them until
    they receive their first grants. It is imperative that we enable
    America's scientists to master their craft.
        For fiscal year 2020, R01 grants for established and new
    investigators are being funded to the 10th percentile, up from the 8th
    in fiscal year 2019. Though the funding rate is still below the 15th
    percentile target, moving back into the double digits is a welcome sign
    of progress. However, the NCI's grant success rate has not kept pace
    with other NIH institutes, which have an average success rate around 19
    percent, suggesting there is still work to do.
                                   conclusion
        Now is the time for Congress to invest in biomedical research in
    general and cancer research in particular. According to the American
    Cancer Society, there will be an estimated 1.8 million new cancer cases
    diagnosed in the United States in 2020. Fortunately, improvements in
    early detection, cancer staging, and surgical techniques, as well as
    the development of innovative therapies, have contributed to better
    outcomes for patients with cancer. AACI joins our colleagues in the
    biomedical research community in recommending that the subcommittee
    recognize the NIH as a national priority by enacting a final fiscal
    year 2021 spending package that includes $44.7 billion for the NIH and
    $6.9 billion for the NCI.
        A robust Federal investment in our nation's NCI-Designated Cancer
    Centers and academic cancer centers will allow the cancer research
    community to build on decades of momentum to make continued progress
    against cancer.

        [This statement was submitted by Jennifer Pegher, Executive
    Director,
    Association of American Cancer Institutes.]
                                     ______

       Prepared Statement of the Association of American Medical Colleges
        The Association of American Medical Colleges (AAMC) is a not-for-
    profit association dedicated to transforming healthcare through
    innovative medical education, cutting-edge patient care, and
    groundbreaking medical research. Its members comprise all 155
    accredited U.S. and 17 accredited Canadian medical schools; nearly 400
    major teaching hospitals and health systems, including 51 Department of
    Veterans Affairs medical centers; and more than 80 academic societies.
    Through these institutions and organizations, the AAMC serves the
    leaders of America's medical schools and teaching hospitals and their
    173,000 full-time faculty members, 89,000 medical students, 129,000
    resident physicians, and more than 60,000 graduate students and
    postdoctoral researchers in the biomedical sciences.
        The COVID-19 pandemic has illustrated how sustained support for the
    research, education, and patient care missions of medical schools and
    teaching hospitals is essential to ensure a resilient healthcare
    infrastructure that is prepared to respond to both novel and existing
    threats. The AAMC is grateful to Congress for investments made through
    supplemental emergency funding packages to date, which take important
    steps to provide relief for healthcare providers and critical safety
    net providers, including major teaching hospitals and faculty
    physicians, for both increased clinical spending and losses associated
    with COVID-19; for expansion of testing capacity and contact tracing;
    for additional student loan relief and funding for higher education.,
    and for additional COVID-19-related medical research. We look forward
    to continuing to work with lawmakers as discussions around additional
    emergency funding needs progress.
        To continue to fulfill these important missions over the long-term,
    the AAMC requests continued support through the regular appropriations
    process as well for the following Federal priorities essential in
    assisting medical schools and teaching hospitals to fulfill their
    missions of education, research, and patient care in fiscal year 2021:
    $44.7 billion for the National Institutes of Health (NIH), including
    funds provided through the 21st Century Cures Act for targeted
    initiatives; $460 million in budget authority for the Agency for
    Healthcare Research and Quality (AHRQ); $790 million for the Title VII
    health professions and Title VIII nursing workforce development
    programs, and $465 million for the Children's Hospitals Graduate
    Medical Education (CHGME) program, at the Health Resources and Services
    Administration (HRSA)'s Bureau of Health Workforce; and continued
    support for student aid through the Department of Education. The AAMC
    appreciates the Subcommittee's longstanding, bipartisan efforts to
    strengthen these programs.
        We recognize the constraints the committee faces as a result of the
    fiscal year 2021 discretionary spending cap. To enable the necessary
    support for the broad range of critical Federal priorities, the AAMC
    urges Congress to exempt key programs that support the nation's COVID-
    19 response from the fiscal year 2021 caps, and also to approve a
    funding allocation for the Labor-HHS subcommittee that enables full
    investment in the priorities outlined below.
        National Institutes of Health. Congress's longstanding bipartisan
    support for medical research has contributed greatly to improving the
    health and well-being of all Americans. The foundation of scientific
    knowledge built through NIH-funded research drives medical innovation
    that improves health through new and better diagnostics, improved
    prevention strategies, and more effective treatments. Over half of the
    life-saving research supported by the NIH takes place at medical
    schools and teaching hospitals, where scientists, clinicians, fellows,
    residents, medical students, and trainees work side-by-side to improve
    the lives of Americans through research. This partnership is a unique
    and highly productive relationship, one that lays the foundation for
    improved health and quality of life and strengthens the nation's long-
    term economy.
        The AAMC thanks Congress for the bipartisan support that resulted
    in the inclusion of $41.7 billion in the fiscal year 2020 omnibus
    spending bill for medical research conducted and supported by the NIH,
    which builds off meaningful increases for NIH since fiscal year 2016.
    Additionally, the AAMC thanks the Subcommittee for recognizing the
    importance of retaining the salary cap at Executive Level II of the
    Federal pay scale. The AAMC is concerned that proposals to undermine
    salary support would limit the number of grantees with sufficient funds
    to conduct research and ultimately weaken research nationwide. This
    consequence would directly counter the Subcommittee's efforts over the
    years to strengthen the nation's research enterprise.
        In fiscal year 2021, the AAMC supports the Ad Hoc Group for Medical
    Research recommendation that Congress provide $44.7 billion for NIH,
    including funds provided through the 21st Century Cures Act for
    targeted initiatives. This funding level would continue the momentum of
    recent years by enabling meaningful base budget growth over biomedical
    inflation to help ensure stability in the nation's research capacity
    over the long term. Securing a reliable, robust budget trajectory for
    NIH is key in positioning the agency--and the patients who rely on it--
    to capitalize on the full range of research in the biomedical,
    behavioral, social, and population-based sciences.
        Scientific discoveries rely on support from Congress. We must
    continue the current trajectory if we are to strengthen our nation's
    research capacity and solidify our global leadership in medical
    research, ensure a biomedical research workforce that reflects the
    racial and gender diversity of our citizenry, and inspire a passion for
    science in current and future generations of researchers.
        Agency for Healthcare Research and Quality.--Complementing the
    medical research supported by NIH, AHRQ sponsors health services
    research designed to improve the quality of healthcare, decrease
    healthcare costs, and provide access to essential healthcare services
    by translating research into measurable improvements in the healthcare
    system. As the only Federal agency with the sole purpose of generating
    evidence to make healthcare safer; higher quality; and more accessible,
    equitable, and affordable, AHRQ also works to ensure such evidence is
    available across the continuum of healthcare stakeholders, from
    patients to payers to providers. The AAMC joins the Friends of AHRQ in
    recommending $471 million in budget authority for AHRQ in fiscal year
    2021.
        Health Professions Funding.--HRSA's Title VII health professions
    and Title VIII nursing workforce development programs allow grantees to
    test educational innovations, respond to changing delivery systems and
    models of care, and are instrumental to increasing the supply,
    distribution, and diversity of the healthcare workforce. These programs
    improve access to and quality of care for vulnerable populations--
    including elderly, children and families living on low incomes and in
    rural and underserved communities. Additionally, as we face ever-
    changing public health threats impacting patients across the country,
    such as COVID-19, continued investment in Titles VII and VIII programs
    is essential to addressing the health challenges of today and the
    future.
        Through loans and scholarships to students, and grants and
    contracts to academic institutions and non-profit organizations, these
    programs fill the gaps in the supply of health professionals not met by
    traditional market forces. The full spectrum of Title VII programs,
    from workforce diversity programs to geriatric programs, is essential
    in preparing medical professionals to adapt to the changing needs of
    the nation's aging and diverse population. Studies demonstrate that the
    programs graduate more minority and disadvantaged students and prepare
    providers that are more likely to practice in rural and underserved
    areas.
        The Title VII and Title VIII programs also support faculty
    development, curriculum development, and continuing education
    opportunities. These are all essential components to ensure faculty and
    providers are equipped to meet the nation's changing needs and train
    the next generation of health professionals. The AAMC joins the Health
    Professions and Nursing Education Coalition (HPNEC) in recommending
    $790 million for these critical workforce programs in fiscal year 2021.
        In addition to funding for Title VII and Title VIII, HRSA's Bureau
    of Health Workforce also supports the CHGME program, which provides
    critical Federal graduate medical education support for children's
    hospitals to prepare the future primary care and specialty care
    workforce for our nation's children. We support $465 million for the
    CHGME program in fiscal year 2021. We also encourage Congress to
    provide robust funding to the Rural Residency Program, providing
    funding to rural residency tracks, encouraging future physicians to
    practice in those communities.
        The AAMC encourages Congress to provide long-term sustained funding
    for the National Health Service Corps, through its mandatory and
    discretionary mechanisms. We support $490 million in total funding for
    the program in fiscal year 2021. This $60 million (14 percent) increase
    is the first stage of a 5-year systematic doubling of the NHSC to meet
    the needs of all federally designated health professions shortage
    areas. As the nation faces multiple health professional shortages,
    sustained investments in workforce programs are necessary to help care
    for our nation's most vulnerable populations.
        Additional Programs.--The AAMC supports robust, sustained funding
    for public health infrastructure to begin to reverse years of chronic
    underfunding. In addition to increased funding for the Centers for
    Disease Control and Prevention, the AAMC recommends at least $474
    million for the Hospital Preparedness Program, as well as $40 million
    to continue the regional preparedness program created to address Ebola
    and other special pathogens, including funding for regional treatment
    centers, frontline providers, and the National Ebola Training and
    Education Center (NETEC). The AAMC appreciates that the president's
    fiscal year 2021 budget proposal requests $4 million to support grants
    to medical schools and teaching hospitals to develop curricular
    resources on medication-assisted treatment. The AAMC supports the
    programs authorized under Sections 3202 and 7101 of the SUPPORT Act
    (Public Law 115-271) to enhance medical education, and we encourage
    their full funding.
        The AAMC urges the Subcommittee to sustain student loan and
    forgiveness programs for health professions students at the Department
    of Education, including GradPLUS loans and Public Service Loan
    Forgiveness (PSLF). With doctors, residents, fellows, and medical
    students on the front lines of COVID-19, it is imperative that these
    health professions are rewarded for their public service, and make sure
    there are affordable loans to fund a student's medical education. The
    average graduating debt of medical students is currently $200,000, and
    total repayment can range from $365,000 to $440,000.
        Once again, the AAMC appreciates the opportunity to submit this
    statement for the record and looks forward to working with the
    Subcommittee as it prepares its fiscal year 2021 spending bill.
                                     ______

              Prepared Statement of the Association of Farmworker
                              Opportunity Programs
        Chairman Blunt and Ranking Minority Member Murray:
        Thank you for the opportunity to present to you and your
    subcommittee the testimony of the Association of Farmworker Opportunity
    Programs (AFOP) in support of the nation's more than 50-year commitment
    to providing eligible agricultural workers the opportunity to achieve
    the American Dream for themselves and their families. As you begin work
    on your fiscal year 2021 Labor-Health and Human Services-Education
    appropriations bill, AFOP encourages you to build on the foundations
    laid by the highly successful programs described below by adequately
    funding them in the coming fiscal year: National Farmworker Jobs
    Program (NFJP), United States Department of Labor (DOL) Employment and
    Training Administration ($98,896,000); and Susan Harwood Training
    Grants, DOL Occupational Safety and Health Administration
    ($10,537,000). Not only do these programs maximize the Federal
    Government's investment in them, they also generate for employers the
    qualified and healthy workers essential to their growth. These programs
    also dramatically change peoples' lives for the better, often in rural
    areas, allowing them to enjoy economic success and participate more
    fully in our great nation. Thank you for supporting these very
    effective programs and the excellent results they bring for society's
    most vulnerable.
                        national farmworker jobs program
        NFJP is the bedrock of the nation's commitment to helping
    agricultural workers upgrade their skills in and outside agriculture,
    providing employers with what they increasingly say they need:
    hardworking, committed, well-trained, skilled workers. Administered by
    DOL, NFJP provides funding through a competitive grant process to 52
    community-based organizations and public agencies nationwide that
    assist workers and their families to attain greater economic stability.
    One of DOL's most successful employment training programs, NFJP helps
    agricultural workers acquire the new skills they need to start careers
    that offer higher wages and a more stable employment outlook. In
    addition to employment and training services, the program provides
    supportive services that help agricultural workers retain and stabilize
    their current agriculture jobs, as well as enable them to participate
    in up-training and enter new careers. NFJP housing assistance helps
    meet a critical need for the availability and quality of agricultural
    worker housing, and supports better economic outcomes for workers and
    their families. NFJP also facilitates the coordination of services
    through the American Job Center network for agricultural workers so
    they may access other services of the public workforce system.
        The agricultural workers who come to NFJP seek training to secure
    and excel in the in-demand jobs employers say they find challenging to
    fill. In doing so, the workers establish the financial foundation that
    allows them and their families to escape the chronic unemployment and
    underemployment they face each year. Many NFJP participants enter
    construction, welding, healthcare, and commercial truck-driving. Others
    train for the solar/wind energy sector, culinary arts, and for
    positions such as machinists, electrical linemen, and a variety of
    careers in and outside of agriculture. To be eligible for NFJP, workers
    must be low-income, depend primarily on agricultural employment, and
    provide proof of American citizenship or work authorization.
    Additionally, male applicants must have registered with the Selective
    Service.
        Agricultural workers are some of the hardest working individuals in
    this country, enduring tremendous physical and financial hardships in
    providing produce Americans eat every day. Yet, agricultural workers
    remain among the nation's most vulnerable employees and job seekers,
    facing significant barriers to work advancement, including:
      --The average agricultural worker family of four earns just $20,000
            per year, well below the national poverty line.
      --English-language fluency is a substantial challenge for many.
      --More than half the children of migratory agricultural workers drop
            out of school, and, among all agricultural workers, the median
            highest grade completed is 9th grade (National Agricultural
            Workers Survey).
      --Due to poverty and their rural locations, most agricultural workers
            have extremely limited access to transportation.
        Despite these barriers, NFJP continues to be one of the most
    successful Federal job training programs, exceeding all DOL's goals. In
    2018 alone, NFJP service organizations provided more than 10,000
    agricultural workers with services, according to DOL. These NFJP
    providers have served more than an estimated 150,000 agricultural
    workers and their family members over the last 10 years. Funding
    program this year at $98,896,000 would allow NFJP to train even more
    dependable, capable workers to take on the nation's most challenging
    jobs. Also, consistent appropriations for youth agricultural workers
    (ages 14- to 24-years) will allow this cohort, so often overlooked and
    ignored by anti-poverty programs, to stay in school, and, if not in
    school, to avail themselves of crucial training to get a good job and
    establish themselves as productive and successful members of society.
                      agricultural worker health & safety
        AFOP also recommends continued appropriations for the DOL
    Occupational Safety and Health Administration Susan Harwood grant
    program, through which AFOP has augmented pesticide safety training
    with curricula to help workers recognize and avoid the dangers of heat
    stress so common in the fields. In supporting this funding, you can arm
    the nation's agricultural workers with the knowledge they need to keep
    themselves safe on the job. The NFJP network of some 257 trainers in 30
    states trains agricultural workers on how to protect against pesticide
    poisoning and heat stress. Trainers then follow up with agricultural
    workers to assess knowledge gained and retained, and changes in labor
    practice. Since 1995, more than 492,000 agricultural workers have
    become certified as trained in safety precautions, and hundreds of
    thousands of family members, children, and community agencies have also
    received safety training. The network collaborates with universities,
    community organizations, local governments, and businesses to maximize
    its unparalleled access to agricultural workers and their families. By
    reaching agricultural workers with heat stress prevention and pesticide
    safety training, the network's trainers offer access to other services
    and create a ripple effect of positive impact--improving the quality of
    life for agricultural workers and their families--which is what NFJP
    organizations do best.
        Thank you for supporting these worthy programs. AFOP stands ready
    to assist you in any way as you proceed with your very important work.

        [This statement was submitted by Daniel J. Sheehan, Executive
    Director,
    Association of Farmworker Opportunity Programs.]
                                     ______

         Prepared Statement of the Association of Independent Research
                                   Institutes
        The Association of Independent Research Institutes (AIRI) thanks
    the Subcommittee for its long-standing and bipartisan leadership in
    support of the National Institutes of Health (NIH). We continue to
    believe that science and innovation are essential if we are to improve
    our nation's health, sustain our leadership in medical research, and
    remain competitive in today's global information and innovation-based
    economy. AIRI urges the Subcommittee to provide NIH with at least $44.7
    billion in fiscal year 2021. AIRI also urges the Subcommittee to reject
    the harmful investigator salary cap policies proposed in the
    President's fiscal year 2020 budget request, as any changes to salary
    policy would disproportionately impact independent research institutes.
        First, we would like to deeply thank the Subcommittee for providing
    another increase of $2.6 billion for NIH in the fiscal year 2020
    minibus appropriations bill. The Subcommittee's support of NIH is
    strongly demonstrated by these much-needed funds for life-saving
    biomedical research. However, there is still much more to do. NIH is
    tackling vast, interdisciplinary problems such as the opioid crisis,
    the development of a universal flu vaccine, and Alzheimer's disease. In
    addition, the ongoing public health crisis associated with the
    coronavirus outbreak and COVID-19 pandemic reminds us that now is not
    the time to pull back or slow down on needed investments in the
    nation's biomedical research ecosystem. Continued budget certainty is
    needed for the agency to predictably fund new and ongoing grants and
    consider new initiatives necessary to improving human health. NIH will
    also begin to explore how emerging technologies such as artificial
    intelligence and machine learning can provide opportunities to deepen
    our understanding of chronic diseases and systemic health inequities,
    and advance clinical care. To ensure cutting-edge research at
    independent research institutes is not disrupted, AIRI strongly
    supports a topline of $44.7 billion for NIH in fiscal year 2021.
        AIRI is a national organization of more than 90 independent, non-
    profit research institutes that perform basic and clinical research in
    the biological and behavioral sciences. AIRI institutes vary in size,
    with budgets ranging from a few million to hundreds of millions of
    dollars. In addition, each AIRI member institution is governed by its
    own independent Board of Directors, which allows our members to focus
    on discovery-based research while remaining structurally nimble and
    capable of adjusting their research programs to emerging areas of
    inquiry. Investigators at independent research institutes consistently
    exceed the success rates of the overall NIH grantee pool, and they
    receive about 10 percent of NIH's peer-reviewed, competitively awarded
    extramural grants.
        The partnership between NIH and America's scientists, research
    institutions, universities, and medical schools is unique and highly-
    productive, leveraging the full strength of our nation's research
    enterprise to foster discovery, improve our understanding of the
    underlying cause of disease, and develop the next generation of medical
    advancements that deliver more treatments and cures to patients.
        Not only is NIH research essential to advancing health, it also
    plays a key economic role in communities nationwide. In fiscal year
    2019, NIH invested $30.82 billion, or almost 80 percent of its budget,
    in the biomedical research community. This investment supported more
    than 476,000 jobs nationwide and generated nearly $81 billion in
    economic activity across the U.S.\1\ AIRI member institutes are
    particularly relevant in this regard, as they are located across the
    country, including in many smaller or less-populated states that do not
    have major academic research institutions. In many of these regions,
    independent research institutes are major employers and local economic
    engines, and they exemplify the positive impact of investing in
    research and science.
    ---------------------------------------------------------------------------
        \1\ NIH's funding information and economic impact data comes from
    United for Medical Research's 2020 State-By-State Update, https://
    www.unitedformedicalresearch.org/wp-content/uploads/2019/04/NIHs-Role-
    in-Sustaining-the-US-Economy-FY19-FINAL-2.13.2020.pdf.
    ---------------------------------------------------------------------------
        The NIH model for conducting biomedical research, which involves
    supporting scientists at universities, medical centers, and independent
    research institutes, provides an effective approach to making
    fundamental discoveries in the laboratory that can be translated into
    medical advances that save lives. AIRI member institutions are private,
    stand-alone research centers that set their sights on the vast
    frontiers of medical science. However, AIRI member institutes are
    especially vulnerable to reductions in the NIH budget, as they do not
    have other reliable sources of revenue to make up the shortfall.
        AIRI opposes the harmful investigator salary proposal in the
    President's fiscal year 2021 budget that would reduce the salary cap to
    Executive Level V from Executive Level II for extramural researchers.
    This policy would disproportionately affect early-career investigators
    and independent research institutes and hinder AIRI members' ability to
    recruit and retain talented researchers. The caps also negatively
    affect the confidence of future researchers in the viability of a
    career in biomedical sciences, severely harming the competitiveness and
    capacity of the U.S. biomedical enterprise.
        The Federal Government has an irreplaceable role in supporting
    investigators and medical research. No other public, corporate, or
    charitable entity is willing or able to provide the broad and sustained
    funding for the cutting-edge research necessary to yield new
    innovations and technologies of the future. NIH supports long-term
    competitiveness for American workers, forming one of the key
    foundations for U.S. industries like biotechnology, medical devices,
    and pharmaceutical development, among others. Unfortunately, any
    erosion to the national commitment to medical research could threaten
    our ability to support a medical research enterprise that takes full
    advantage of existing and emerging scientific opportunities.
        AIRI member institutes' flexibility and research-only missions
    provide an environment particularly conducive to creativity and
    innovation. Independent research institutes possess a unique
    versatility and culture that encourages them to share expertise,
    information, and equipment across research institutions, as well as
    neighboring universities. These collaborative activities help minimize
    bureaucracy and increase efficiency, allowing for fruitful partnerships
    in a variety of disciplines and industries. Also, unlike institutes of
    higher education, AIRI member institutes focus primarily on scientific
    inquiry and discovery, allowing them to respond quickly to the research
    needs of the nation.
        AIRI deeply thanks the Subcommittee for its important work
    dedicated to ensuring the health of the nation, and we appreciate this
    opportunity to urge the Subcommittee to continue the success of NIH by
    providing $44.7 billion in fiscal year 2021 and reaffirming support for
    NIH's current investigator salary policies to strengthen our nation's
    investment in life-saving medical research.
                                     ______

              Prepared Statement of the Association of State and
                          Territorial Health Officials
        On behalf of the Association of State and Territorial Health
    Officials (ASTHO), I respectfully submit this testimony on fiscal year
    2021 appropriations to the U.S. Department of Health and Human Services
    (HHS). ASTHO is requesting $8.3 billion for the Centers for Disease
    Control and Prevention (CDC), including $824 million for the Public
    Health Emergency Preparedness Program (PHEP), and $170 million for the
    Preventive Health and Health Services Block Grant (Prevent Block
    Grant). Under the Assistant Secretary for Preparedness and Response
    (ASPR), we are requesting $474 million for the Hospital Preparedness
    Program (HPP) and $45.6 million to sustain the Regional Treatment
    Network for Ebola and Other Special Pathogens (RTNESP) and the National
    Ebola Training and Education Center (NETEC). Additionally, we are
    requesting $8.8 billion in discretionary funding for the Health
    Resources and Services Administration (HRSA) and $2 million to support
    a study by the National Academies of Sciences, Engineering, and
    Medicine to understand opportunities to improve the health of U.S.
    territories and freely associated states, given the health disparities
    that exist within those populations and the critical role our
    territories and freely associated states play in our nation's health
    security. Additionally, we are seeking a $500 million increase for the
    Substance Abuse and Mental Health Services Administration (SAMHSA)
    Substance Abuse Prevention and Treatment (SAPT) Block Grant to support
    state and territorial efforts to address the opioid epidemic and the
    continued need to prevent addiction in our states and territories.
        ASTHO is the national nonprofit organization representing the
    public health agencies of the United States, the U.S. territories and
    freely associated states, and the District of Columbia. ASTHO members,
    the chief health officials of these jurisdictions, are dedicated to
    ensuring excellence in public health practice. The mission of our
    nation's governmental health agencies is to protect and improve the
    health of the population, everywhere, every day. The work of public
    health is often invisible, and sometimes it is only in a crisis when
    the value and importance of sustained investment in public health
    becomes apparent. Those crises, unfortunately, happen all too often:
    the current 2019 novel coronavirus (COVID-19) outbreak, measles and
    hepatitis A outbreaks, natural disasters, rising obesity rates, the
    opioid epidemic, and many others highlight the important work of
    disease prevention and health protection that is at the core of public
    health's mission.
        Just like our transportation system, our healthcare system, and our
    air traffic control system, the governmental public health system needs
    a predictable, sustained, and increased investment to deliver the
    essential public health services all Americans expect and enjoy. We
    appreciate Congress providing increased public health funding in the
    fiscal year 2020 appropriations bills and we acknowledge the non-
    defense discretionary caps do not significantly increase for fiscal
    year 2021. Therefore, our appropriations requests represent modest
    investments over the previous fiscal year to ensure governmental public
    health continues our mission of promoting optimal health to all.
    ASTHO's ``22x22'' campaign, endorsed by 100 national organizations,
    urges Congress to increase funding for the CDC by 22 percent by fiscal
    year 2022. For fiscal year 2021, we request $8.3 billion for CDC
    overall. This increase is important because Federal investment in
    public health has not kept pace with inflation nor the considerable
    challenges posed by infectious disease outbreaks, extreme weather
    events, and other emergencies. According to a 2017 Trust for America's
    Health report, only 3 percent of all health spending is directed to
    public health, while the other 97 percent (out of $3.36 trillion total)
    is spent on healthcare. Finally, the waning public health workforce
    strains the ability of state and local public health departments to
    protect and promote the health of the population. The ``22x22''
    campaign is an effort to bolster CDC's funding over the next 4 years to
    eventually reach $8.8 billion for the agency by fiscal year 2022. One
    of the most striking examples of the need for increased, predictable,
    and sustained funding for the CDC is the recent COVID-19 outbreak.
    Addressing outbreaks requires a strong, coordinated response from
    Federal, state, territorial, and local governments. In these scenarios,
    the CDC--and the funding it provides to these entities-is critical.
    While we are grateful for the emergency supplemental funding to bolster
    response efforts, state and territorial health departments need
    consistent, sustained, and predictable funding to accomplish their
    important health protection mission. Establishing and maintaining solid
    public health systems allow health departments to prevent, protect,
    respond, and recover from events, as well as reduce human and financial
    tolls.
        Critical to public health preparedness and response is the support
    public health receives from the PHEP Cooperative Agreement, for which
    we request $824 million. Since its establishment in 2002, the program
    has invested in states and territories to create and maintain
    foundational capabilities. It is critical to provide stable and
    sufficient health emergency preparedness funding to maintain a standing
    set of core capabilities, so they are ready when needed. The program
    funding--once at $918 million in 2002--is 26 percent lower at $675
    million today, with public health threats not experiencing similar
    declines. In close partnership with the PHEP program is the Hospital
    Preparedness Program (HPP). ASTHO requests $474 million for HPP. As the
    only source of Federal funding that supports regional healthcare system
    preparedness, HPP promotes a sustained national focus to improve
    patient outcomes, minimizes the need for supplemental state and Federal
    resources during emergencies, and enables rapid recovery. The work of
    these programs is something that we should all be proud of and,
    therefore, continue to increase funding for both. In addition to the
    HPP, we are requesting that Congress provide $45.6 million to sustain
    the Regional Treatment Network for Ebola and Other Special Pathogens
    (RTNESP) and the National Ebola Training and Education Center (NETEC)
    that are under ASPR's leadership.
        Prevention is the best form of treatment. For this, ASTHO requests
    $170 million for the Prevent Block Grant. Programs funded by the
    Prevent Block Grant cannot be adequately supported or expanded through
    other funding mechanisms. States use these flexible dollars to offset
    funding gaps in programs that address the leading causes of death and
    disability. The success of the Prevent Block Grant is achieved by using
    evidence-based methods and interventions, reducing risk factors,
    leveraging other funds, and continuing to monitor and reevaluate funded
    programs.
        While vital, CDC is not the only Federal agency that supports
    safety net programs in states and territories. ASTHO is requesting $8.8
    billion for discretionary funding for HRSA. HRSA administers programs
    that focus on improving care for tens of millions of Americans who are
    medically underserved or face barriers to needed care by strengthening
    the health workforce.
        ASTHO is also encouraged by the Administration's plan to end the
    HIV epidemic and improve maternal health in America. State and
    territorial health officials look forward to working with Federal and
    local partners across the country to bring effective strategies to
    scale. State, territorial, local, and tribal jurisdictions and our
    community-based organizations and healthcare partners must have the
    resources necessary to enhance and deliver these evidence-based public
    health interventions and not pull funds from other vital public health
    programs.
        State and territorial health departments are on the front lines of
    responding to the current crisis in our country caused by substance
    misuse, addiction, and drug overdoses. ASTHO is appreciative of
    previous investments in public health toward this effort and supportive
    of an increase of $500 million, or a total of $2.4 billion, for the
    Substance Abuse Prevention and Treatment Block Grant at SAMHSA to
    sustain activities and continue the response to the opioid epidemic and
    substance abuse and misuse disorders more broadly.
        Health outcomes data from territories and freely associated states
    (FAS) indicates that the health of these populations is far worse, in
    comparison to the U.S. mainland population. Therefore, ASTHO requests
    that Congress fund a study conducted by the National Academies of
    Science, Engineering, and Medicine to better understand the health
    impacts of policy on the U.S. territories and FAS. The results of this
    research can guide investments, policy, and support and, ultimately,
    improve the health of those who reside in these insular areas and are
    part of the past and future fabric of our nation.
        ASTHO appreciates the attention and diligence of this committee in
    previous fiscal years to provide increased funding for governmental
    public health. In these challenging but important times for public
    health, we urge Congress to continue its support for state and
    territorial public health.

        [This statement was submitted by Michael Fraser, PhD, MS, CAE,
    FCPP, Chief Executive Officer, Association of State and Territorial
    Health Officials.]
                                     ______

        Prepared Statement of the Association of University Programs in
                         Occupational Health and Safety
        On behalf of Association of University Programs in Occupational
    Health and Safety (AUPOHS), we respectfully request that the fiscal
    year 2021 Labor, Health and Human Services Appropriations bill include
    no less than $354,800,000 for the National Institute for Occupational
    Safety and Health (NIOSH), including not less than a $2 million
    increase over the fiscal year 2020 level for the Education and Research
    Centers (ERCs), the Agriculture, Forestry and Fishing (AFF) Program,
    and the Total Worker Health Program (TWH).
        As demonstrated by the COVID-19 pandemic, occupational injury and
    illness create a striking burden on America's health, well-being and
    productivity. America's essential workers are heroes who continue to
    face personal risk, illness and death in the workplace for the good of
    the country. Although the true toll of COVID-19 on American workers is
    yet unknown, the impact is high, illustrated by the finding that
    approximately 10 percent of Americans infected by COVID-19 are
    healthcare workers. High rates of infection are seen in other essential
    worker groups such as those attending to our elderly and disabled in
    nursing homes and long-term care facilities, agricultural production
    workers maintaining our food supply, correctional facility workers, and
    others.
        Even before the pandemic, despite significant improvements in
    workplace safety and health over the last several decades, 14 workers
    were dying daily from workplace injuries, and 145 people were dying
    from work-related diseases. In the pre-pandemic era, annually, 2.8
    million workers were seriously injured on the job. One third of those
    injured workers required time off and 5,000 workers lost their lives to
    job injuries. According to the 2018 Liberty Mutual Workplace Safety
    Index, U.S. businesses were spending more than $1.1 billion a week on
    serious, nonfatal workplace injuries. The economic consequences related
    to workplace illness from the pandemic will no doubt have a staggering,
    compounding impact for years to come.
        These figures are especially tragic because many work-related
    fatalities, injuries and illnesses are preventable. To improve this
    situation effective, professionally directed, health and safety
    programs are required. Furthermore, by fostering workplaces that
    promote overall employee health and well-being, employers, employees,
    families, and communities benefit from improved productivity and
    reduced healthcare costs. NIOSH is the primary Federal agency
    responsible for conducting research and making recommendations for the
    prevention of work-related illness and injury and for promoting worker
    health and well-being.
        NIOSH responded quickly to the pandemic and continues to perform an
    important service for employers and employees in the face of COVID-19.
    Importantly, it is the Federal agency that is charged with certifying
    and approving Personal Protective Equipment (PPE), including the masks
    that are necessary to protect U.S. workers from inhalation exposures to
    chemical and biological agents including the virus. During the
    pandemic, NIOSH has accelerated the approval process for establishing
    the safety and quality of new masks and other PPE. In addition, NIOSH
    has deployed teams across the country in response to industry requests
    for assistance, including more than 15 meatpacking plants that
    experienced outbreaks. NIOSH has contributed leadership and expertise,
    contributing to Federal guidance and decision tools for industries
    including mass transit, restaurants and bars, childcare facilities,
    schools, youth programs and camps, among others, including recent
    guidance for companies returning to work or expanding work operations.
        The NIOSH supported extramural Centers, including the Education and
    Research Centers (ERCs), Centers in the Agriculture, Forestry and
    Fishing (AFF) Program, and the Total Worker Health(r) Centers of
    Excellence, have responded aggressively to the pandemic. These Centers
    have been proactive in providing resources, employer assistance,
    training, and research that are helping to drive improvements in our
    nation's response. The work that the Centers are undertaking during
    this crisis underscores the need for increased funding for NIOSH and
    the Centers in the fiscal year 2021 Labor HHS bill.
        As of May 15, 2020, all Centers have received and responded to
    requests to assist in COVID-19 response. The requests have come from
    employers, community organizations, health departments, workers, and
    city or state officials, among others. The assistance that has been
    requested and provided includes access to our content expertise on how
    COVID-19 affects the workplace and strategies for keeping workplaces
    safe and maintaining or restoring business operations, policy
    recommendations, resource recommendations, training of employers,
    training for workers, as well as providing interviews and information
    for the general public through media requests, and a creation of
    websites and toolkits. Webinars and trainings by the Centers are
    reaching thousands of organizations. Eighty-five percent of Centers
    report that these trainings focus on employers. Specific audiences for
    trainings include public health professionals and other health and
    safety professionals, healthcare workers, low-wage workers, and
    researchers.
        Generating high quality information to help inform decisionmaking
    and conducting research to improve worker safety are central tenets of
    the Centers. Examples of COVID-19 related research includes:
      --Surveying farmworkers about COVID-19 health and economic impacts.
      --Development of new Personal Protective Equipment (PPE) fabric to
            filter and deactivate the virus.
      --Development of a tool for assessing the impact of COVID-19 on
            employers and employees, specifically including agricultural
            producers, small businesses, and healthcare facilities.
      --Assessing the impact of remote work and return to work on workplace
            health and safety climate, stress levels, mental health, work-
            family conflict, and leadership.
        As workplaces rapidly evolve, changes continue to present new
    health risks to workers that need to be addressed through occupational
    safety and health research. In addition to the long-term implications
    of the pandemic on the American workplace and workforce, there are
    other ongoing trends that must be addressed. For example, NIOSH is
    advancing the understanding of how emerging technologies such as
    robotics, nanotechnology, and advanced manufacturing can be managed to
    ensure safe operation. In addition, the opioid crisis is impacting
    millions of American workers and workplaces. NIOSH and the Centers
    developed a multipronged approach to identify high-risk work conditions
    leading to opioid misuse and to opioid use disorder.
        Through 18 university-based centers, the ERCs provide local,
    regional, and national resources for those in need of occupational
    health and safety assistance--industry, labor, government, academia,
    non-governmental organizations and the public. Collectively, the ERCs
    provide graduate-level education in the occupational health and safety
    disciplines and offer professional workforce development training and
    research resources to every Federal Region in the U.S. Importantly, the
    ERCs play a crucial role in preparing a workforce of occupational
    safety and health professionals trained to identify and mitigate
    vulnerabilities to terrorist attacks and to increase readiness to
    respond to biological, chemical, or radiological attacks. Occupational
    health and safety professionals work with emergency response teams to
    minimize disaster losses, as exemplified by their lead role in
    protecting the safety of 9/11 emergency responders in New York City and
    Virginia. In 2017, occupational health and safety professionals worked
    to minimize hazards among workers involved in clean up and restoration
    in the face of the extreme devastation caused by Hurricanes Harvey,
    Irma and Maria in Texas, Florida, Puerto Rico and the U.S. Virgin
    Islands. In 2020, the ERC's have responded quickly by providing
    employers across the country with accessible, concise information on
    the workplace implications of COVID-19.
        NIOSH also focuses research and outreach efforts on the nation's
    most dangerous worksites that often impact lives in more rural parts of
    America. The Centers for Agricultural Safety and Health were
    established by Congress in 1990 (Public Law 101-517) in response to
    evidence that agricultural, forestry and fishing workers suffer
    substantially higher rates of occupational injury and illness than
    other U.S. workers. According to 2018 bureau of labor statistics data,
    these agricultural workers are more than 6 times more likely to die on
    the job than the average worker. Food security depends on a healthy and
    safe agricultural workforce--a sector that has been hit particularly
    hard during the pandemic. Even prior to COVID-19, the sector averaged
    540 fatalities per year resulting in the highest fatality rate of any
    employment sector in the nation. Today the Agriculture, Forestry, and
    Fishing (AFF) Initiative includes ten regional Agricultural Centers and
    one national children's farm safety and health center. The AFF program
    is the only substantive Federal effort to ensure safe working
    conditions in these vital production sectors. While agriculture,
    forestry, and fishing constitute some of the largest industry sectors
    in the U.S. (DOL 2011), most AFF operations are small: nearly 78
    percent employ fewer than 10 workers, and most rely on family members,
    immigrants, part-time, contract and/or seasonal labor. Many of these
    agricultural workers are excluded from labor protections, including
    OSHA oversight, on the vast majority of American farms. More than 1 in
    100 AFF workers incur nonfatal injuries resulting in lost workdays each
    year. These reported figures do not even include men, women, and youths
    on the most dangerous farms--those with fewer than 11 full-time
    employees. The lifesaving, cost-effective work of the AFF program is
    not replicated by any other agency. For example, state and Federal OSHA
    personnel rely on NIOSH research in the development of evidence-based
    standards for protecting agricultural workers and would not be able to
    fulfill their mission without the AFF program. Also, staff members of
    USDA's National Institute of Food and Agriculture interact with NIOSH
    occupational safety and health research experts in order to learn about
    the cutting-edge research and new directions in this area.
        The AFF program activities have made demonstrated impacts on safety
    and health. In response to COVID-19, they have engaged in a collective
    effort to develop guidance for use by the production agriculture
    industry, including checklists, FAQs, and resource guides. They have
    translated COVID-19 information for Spanish-speaking workers and have
    shared COVID-19 resources with industry partners, agricultural
    communities, and governmental agencies. In addition, they are
    continuing other important work to ensure the safety and productivity
    of American agricultural workers. For example: (1) AFF research has
    shown that rollover protective structures (ROPS or roll bars) and
    seatbelts on tractors can prevent 99 percent of overturn-related
    deaths. (2) AFFs have created training materials in partnership with
    producers to deliver evidence-based practical solutions that reduce
    exposures when handling pesticides and other farm chemicals among
    farmers workers and their children. (3) Partnering with fishing
    communities, the AFFs have developed and tested improved life-jacket
    designs that are comfortable enough to wear while working, markedly
    improve chances of survival in the event of a fall overboard. (4) The
    AFFs have conducted ongoing studies and outreach efforts to ensure the
    safety of our nation's 86,000 workers in forestry & logging, an
    industry with a fatality rate more than 30 times higher than that of
    all U.S. workers.
        NIOSH supports six Centers of Excellence for Total Worker Health
    (TWH) that conduct multidisciplinary research and test practical
    solutions to emerging challenges. The TWH Centers partner with
    government, business, labor, and community to improve the health and
    productivity of the workforce. The TWH Centers have been heavily relied
    upon by employers and employees to address the impact of COVID-19 not
    only from an infectious disease perspective, but to address the impact
    on mental health, stress, burnout, and resiliency of essential workers,
    workers abruptly working remotely, and those furloughed or laid off.
    Even prior to the pandemic, the TWH Centers' research, education, and
    outreach activities occur in workplaces, such as hospitals, factories,
    offices, construction sites, and small businesses, resulting in
    immediate and measurable improvements in health and safety. For
    example, most U.S. employers had already reported that stress and
    mental health were major concerns for the effectiveness and well-being
    of their workforce. Consequences can include higher rates of substance
    use, poor sleep, musculoskeletal disorders, poorer mental health,
    obesity, cardiovascular disease, and cancer. In turn, ill health
    impacts job performance, increasing risks for serious injury,
    absenteeism, and reduced productivity. TWH Centers conduct solutions-
    focused research in partnership with employers and employees to address
    these challenges.
        TWH Centers conduct new and ongoing programs that address safety,
    health, well-being, and productivity of the American workforce. For
    example: (1) TWH Centers have developed and evaluated interventions to
    reduce injuries and disease among workers in corrections to reduce risk
    factors for cardiovascular disease and workplace burn-out in officers.
    (2) In acute care hospitals, they have uncovered the effects of
    harassment and bullying on workplace injury and mental healthcare costs
    for patient care workers. (3) A national online and telephonic advising
    program for small business owners is now providing advice on COVID-19
    as small businesses seek to reopen or increase activity. The TWH
    Centers are an investment in the American economy, helping valued
    employees return home at the end of a productive day safe and
    healthier.
        We urge you to recognize the important contribution of NIOSH,
    including the ERCs, the AFF Program, and the TWH Program to the health
    and productivity of our nation's workforce. Thank you for the
    opportunity to submit testimony.

        [This statement was submitted by Lee S. Newman, MD, MA, President,
    Association of University Programs in Occupational Health and Safety.]
                                     ______

                      Prepared Statement of Autism Speaks
        My name is Angela Geiger, and I am the President and Chief
    Executive Officer of Autism Speaks. Autism Speaks is dedicated to
    promoting solutions, across the spectrum and throughout the life span,
    for the needs of individuals with autism and their families. We do this
    through advocacy and support; increasing understanding and acceptance
    of people with autism; and advancing research into causes and better
    interventions for autism spectrum disorder and related conditions.
        We are grateful for the bipartisan leadership that both the Chairs
    and Ranking Members of the full committee and subcommittee have
    provided in supporting investments in autism research, training, and
    services over many years. As you consider this year's requests, we look
    again to your leadership to build on the significant progress that has
    been made and provide investments to meet the tremendous needs that
    continue to exist. We understand that the Committee is considering
    public witness requests for fiscal year 2021 during an unprecedented
    time for our country--having to carefully balance the annual
    appropriations process and the need for additional COVID-19 relief with
    overall budget considerations. The testimony included here reflects our
    request based on conditions that existed prior to the outbreak of the
    coronavirus, and the pandemic has no doubt exacerbated many of the
    challenges that the autism community experiences.
        We thank you for the opportunity to submit testimony in support of
    autism funding within the National Institutes of Health (NIH), the
    Centers for Disease Control and Prevention (CDC), Health Resources and
    Services Administration (HRSA), Department of Education (DOE), and
    other agencies under your jurisdiction. For fiscal year 2021 we request
    that the Committee invest at least $150 million above current levels in
    autism-related activities. This request would help to align the Federal
    investment in autism-related activities with the budget recommendation
    of the 2016-2017 Interagency Autism Coordinating Committee Strategic
    Plan for Autism Spectrum Disorder. While the NIH, DOE, CDC, and HRSA
    are the largest funders of autism-related research, training, and
    services, multiple other agencies fund important autism-related efforts
    as well. We urge the subcommittee to use the Interagency Autism
    Coordinating Committee recommendations and strategic objectives to
    guide investment across the agencies.
        As you are aware, the CDC's most recent estimate released in late
    March of this year was that 1 in 54 eight-year-olds in the United
    States have an autism spectrum disorder (ASD) diagnosis. Just 10 years
    ago that number was 1 in 150. No single factor accounts for this
    increase; much of it comes as a result of increased awareness and
    earlier diagnosis. In addition, the CDC also recently reported for the
    first time an estimate of the number of autistic adults, finding that
    5.4 million, or 1 in 45 adults, are on the autism spectrum.
        Much of the progress in autism research that has been made is due
    in part to your work and support. As a result of research funded by
    this committee, the age at which autism can be reliably diagnosed has
    gone down from 3 years to 15 months. The sooner a child receives a
    diagnosis, the more likely it is that the child will receive the
    interventions and services that can improve the child's life. Because
    of the research you've funded we now know that individuals on the
    spectrum are more likely to have certain co-morbid health conditions
    like anxiety and epilepsy. Because of the research you have funded,
    clinical practice guidelines have been developed for children with
    autism and are being disseminated to healthcare providers around the
    country.
        The research you have supported has been remarkably important in
    better understanding the biology of autism, better understanding the
    numbers of individuals across the country with an autism spectrum
    disorder diagnosis, and better understanding the types of interventions
    and supports that can benefit the autism community. This important
    knowledge was brought to us by autism research--and in many ways, it is
    because of this progress that we know that so much more needs to be
    done. Here are just a few examples of questions that additional
    research can answer:
      --How can we develop personalized interventions and therapies to
            mitigate the co-morbid health conditions that occur in higher
            rates among autistic individuals?
      --How can we promote evidence-based supports and services to assist
            the 70,000 autistic youth who every year transition out of
            school-age services?
      --Even though autism can be diagnosed at 15 months, the average age
            of diagnosis remains at about 4 years old, and even later in
            low-income communities. What evidence-based practices can we
            use to help diagnose autism earlier across the board?
      --There are tremendous gaps in services and supports across the
            lifespan, from children receiving a diagnosis and intervention
            services to adults who often have very limited access to
            supports. How can we ensure that at a community level everyone
            gets the support they need to lead a fulfilling and productive
            life?
      --There is a dearth of research on issues affecting autistic adults.
            What can be done to not only better understand service and
            support needs, but also why autistic adults have higher
            premature death rates and poorer health outcomes than the rest
            of the population?
        These are just several among many research questions that need to
    be answered. To be sure, studies that address these questions are
    ongoing, but the scale of the challenges faced by our community require
    urgent, increased, and sustained investment. The Interagency Autism
    Coordinating Committee (IACC), the congressionally created body whose
    primary responsibility is to advise the Federal Government on autism-
    related investments, recommended in its most recent Strategic Plan a
    doubling by 2020 of 2015 levels of investment in autism research. Even
    with this investment, the IACC stated that the ``increases recommended
    by the IACC would not be sufficient to accomplish all of the research
    goals identified by the plan.''
        Furthermore, the IACC pointed out in their plan that the total
    annual cost of autism in the United States has been estimated to be at
    least $236 billion. By contrast, for 2015 combined autism research
    funding among Federal and private sources is less than 1 percent--a
    tiny fraction of the estimated annual total cost of autism. We
    understand that particularly at this juncture in our country that
    resources are finite. However, autism research is far less expensive
    than the cost of autism to families and society, and additional
    investments can help reduce those costs through early identification
    and intervention.
        Fortunately, because of the Committee's previous investments and
    the decisions made by the agencies funded through this bill, there are
    tremendous opportunities to build off existing programs and bring even
    more knowledge from research to services. For example:
      --In their fiscal year 2021 Congressional Budget Justification, the
            National Institutes of Mental Health (NIMH) highlighted the
            research they have funded to help identify ASD as early as
            possible. In that same document, they encourage more research
            into screening methods that can be used in infancy and point
            out the gaps that exist in translating screening methods into
            tools pediatricians can use.
      --The CDC receives only enough funding to monitor the prevalence of
            children with ASD in 11 states. For those 11 states, that
            information is invaluable in driving efforts at a state and
            local level. Additional resources would allow more states to
            monitor prevalence and drive enhancements to services.
      --HRSA has been funding extraordinarily important efforts to develop
            clinical medical standards for treating autistic individuals
            and then translating those standards into practice. More
            investment in this area would not only enhance the development
            of those standards but could rapidly increase their
            dissemination to communities across the nation.
      --HRSA has also funded important research related to the transition
            to adulthood. There has been a significant lack of investment
            in research on issues facing autistic individuals across the
            lifespan, and there are opportunities to build off this
            existing work to close that gap.
        We hear every day from individuals and families in the autism
    community about their successes, challenges, and everything in between.
    The research that you have funded has brought to the autism community a
    range of lasting changes and significant improvements in the lives of
    autistic individuals and their families. We are at a pivotal moment,
    and now is the time to seize on the tremendous opportunity we have to
    address the significant gaps we know persist and continue to make
    progress so that every person on the spectrum can achieve their full
    potential.

        [This statement was submitted by Angela Geiger, President and Chief
    Executive Officer, Autism Speaks.]

                                     ______

                 Prepared Statement of Berkel Jill Renee  deg.
                    Prepared Statement of Jill Renee Berkel
        My son (Richard Berkel) is not a substance abuser and was attending
    college at age 18 when he developed schizophrenia. He has an identical
    twin brother who does not have schizophrenia and we have no history of
    schizophrenia in our family.
        For 18 months, I tried to get my son medical, community and
    professional help through traditional means to stabilize his condition.
    Private medical and Medicaid care was ineffective. The local Mental
    Health agency in our county also provided little or no help. (Hiring
    more case workers does not necessarily provide help for individuals
    with schizophrenia. Our visits with them were valueless.) NAMI was also
    not helpful. The NAMI support groups are extremely painful and one
    hears story after story of homelessness, suicide, and years of trying
    to get help but there is none to be had.
        I did learn through NAMI that schizophrenia is a treatable
    condition and that individuals with it can lead extremely productive
    lives, once stabilized. Long term (6-8 months or more) treatment is
    needed but does not currently exist in a private setting.
        I looked into moving to another state to get help, but found that
    this problem is pervasive in all states. It seems in every state, the
    only long-term treatment facilities that exist belong to the state and
    can only be accessed by a court order by a judge.
        In October of 2019, he was arrested which gave him access to a
    state mental hospital. Unfortunately, the hospital released him prior
    to stabilization, returned him to jail where they plan to drop the
    charges and send him home.
        I am a college educated professional, blindsided by this illness of
    my son and will be 64 years old this year. As a single mom, I have my
    own physical health issues that are aggravated by stress. I lost
    gainful employment from distractions dealing with his condition and am
    currently unemployed. I have limited ability, education and resources
    to deal with his illness.
        Please do the right thing and put the NIMH funding where it will do
    the most help for those individuals that need it!:
        The National Institute of Mental Health (NIMH) is the main Federal
    Government agency for research into mental illness. The NIMH was
    authorized through the passage of the National Mental Health Act in
    1946 to better help individuals with mental health disorders through
    better diagnosis and treatments. With a budget of almost $2 billion in
    2020, the NIMH conducts research and funds outside investigators to
    better understand mental illness and develop new treatments to reduce
    the burden these disorders have on individuals.
        Unfortunately, the NIMH has a recent history of ignoring those with
    the most severe mental illnesses. As Treatment Advocacy Center Founder
    Dr. E. Fuller Torrey wrote in Psychiatric Times earlier this month:
        ``Congress awarded the National Institute of Mental Health an
    additional $98 million as part of the National Institutes of Health
    budget resolution in December 2019, which brings the NIMH budget to
    just under $2 billion and represents a 35 percent increase since 2015,
    one of the largest increases in the history of the NIMH. Yet, during
    the 5 years from 2015 through 2019, NIMH funded a total of 2 new drug
    treatment trials for schizophrenia and bipolar disorder, according to
    clinicaltrials.gov. This contrasts with the 5-year period from 2006
    through 2010 when NIMH funded 48 such trials. NIMH has thus almost
    entirely given up its role of evaluating drugs for the treatment of 2
    disorders (emphasis added).''
        In December 2019, the NIMH released a draft of their five-year
    strategic plan for public comment. They reported receiving more than
    6,000 responses over the winter holidays, including from our
    organization identifying concrete examples of research initiatives the
    NIMH could be pursuing today to help people with serious mental illness
    recover and live better lives. Despite this robust response, NIMH made
    no substantive changes to the research goals or objectives in the final
    version released to the public earlier this week.
        The NIMH research goals for 2020-2025 heighten the existing
    imbalance in NIMH research. In doing so, they offer little hope for new
    or better treatments for individuals who are currently afflicted with a
    mental illness during their lifetime, especially a serious mental
    illness. This failure is inexcusable given the large increase in
    research funding given to NIMH in recent years.
        Future NIMH funding must be used to correct the existing imbalance,
    not worsen it, especially now that the COVID-19 pandemic has upended
    the mental health treatment system and will likely result in an
    exacerbation of symptoms in people currently affected and an increase
    in serious mental illnesses among Americans.
        Those with the most severe forms of mental illness deserve to be
    prioritized.
        Thank you for your consideration of this request.
        Sincerely.

                                     ______

                Prepared Statement of Blackburn Janice K.  deg.
                   Prepared Statement of Janice K. Blackburn
        I am not a mental health expert by profession, but I wish to share
    with the Subcommittee my personal experience concerning the critical
    need for more effective antipsychotic medications that treat the
    symptoms of schizophrenia without producing serious adverse effects on
    the schizophrenic patient. Thank you for your consideration of the
    following comments.
        I am troubled by the National Institute of Mental Health's
    reduction in recent years of clinical trials for new medications to
    treat the symptoms of schizophrenia. I am even more concerned that
    NIMH's new five-year strategic plan does not indicate a change in the
    agency's direction toward a renewed focus on the development of more
    effective antipsychotic medications.
        As the aunt of a young man who suffers with schizophrenia, I am
    quite familiar with the plight of those suffering from this dreadful
    disease as they attempt to find a medication that is effective and
    which does not produce debilitating side effects. My nephew has
    suffered physically and/or emotionally as he has taken a series of
    prescribed medications that create various problems in his daily life--
    problems that cause him to be greatly discouraged in his efforts to
    live as normal a life as possible. Such discouragement has repeatedly
    led to his discontinuing his medications over the years. As the
    Subcommittee is doubtlessly aware, when a person with schizophrenia
    discontinues his/her medication, the costs to the person, their loved
    ones, the healthcare system, law enforcement and society at large can
    be huge. In my nephew's case, the costs have been considerable but,
    fortunately, without serious physical injury to him or others.
        Obviously, in order to minimize the risks to the schizophrenic
    patient and others that arise when such patients abandon the path of
    compliance by discontinuing their prescribed medications, more
    effective antipsychotic medications with fewer serious side effects are
    needed. I hope that this Senate Subcommittee will take steps to ensure
    that the NIMH will renew its focus on the development of more effective
    antipsychotic medications with fewer serious side effects.
                                     ______

         Prepared Statement of the Brain Injury Association of America
        Dear Chairman Blunt, Ranking Member Murray and Committee Members:
        The Brain Injury Association of America (BIAA) appreciates the
    opportunity to submit testimony in support of fiscal year 2021
    appropriations for Federal programs serving the 2.5 million children
    and adults who sustain a traumatic brain injury (TBI) each year and the
    5.3 million Americans living with a disability as a result of TBI.
                                    request
        BIAA urges you to:
        Increase funding to the National Institute on Disability,
    Independent Living, and Rehabilitation Research (NIDILRR) by $15
    million to expand the TBI Model Systems program as follows:
        --Increase the number of competitively funded centers from 16 to 18
                while increasing the per-center support by $200,000;
        --Increase the number of multicenter TBI Model Systems
                Collaborative Research projects from one to three, each
                with an annual budget of $1 million; and
        --Increase funding for the National Data and Statistical Center by
                $100,000 annually to allow all participants to be followed
                over their lifetime.
        Appropriate $19 million to the TBI State Partnership Grant Program,
    housed in ACL's Administration on Disabilities' Independent Living
    Administration of the Administration, to provide funding to all states,
    territories, and the District of Columbia.
        Appropriate $6 million to the Protection & Advocacy Grant Program,
    administered by ACL's Administration on Intellectual and Developmental
    Disabilities, to increase the amount awarded to each state.
        Appropriate $23 million to the Centers for Disease Control and
    Prevention (CDC) as follows:
        --$7 million for CDC's TBI program authorized by the TBI Program
                Reauthorization Act of 2018,
        --$2 million for CDC's falls prevention program,
        --$9 million for CDC's injury control research centers, and
        --$5 million in new funding for a national concussion surveillance
                system.
                                   discussion
        The TBI Model Systems are a collection of 16 research centers
    located across the United States that conduct disability and
    rehabilitation research. The TBI Model Systems are the only source of
    non-proprietary longitudinal data on what happens to people with brain
    injury across the lifespan. They are a key source of evidence-based
    medicine and serve as a ``proving ground'' for future researchers. TBI
    Model Systems sites work closely with the Department of Veterans
    Affairs on research to improve the treatment of Veterans with brain
    injuries. It is in the nation's interest to expand our knowledge in
    caring for all persons who sustain TBIs.
        The TBI State Partnership Grant Program (and its predecessor known
    as the Federal TBI Program) has sought to establish and/or strengthen
    access to systems of care for individuals who sustain brain injuries
    and their families. Currently 27 states are funded at either $300,000
    or $150,000 to address the varied medical, healthcare, and community-
    based service and support needs across an array of public and private
    agencies and providers for individuals with co-occurring substance use
    and TBI, service members and veterans with TBI, seniors with TBIs from
    falls, adults and youth with TBI in the corrections system, student
    athletes managing concussions, and children transitioning from hospital
    to school after TBI. It is important to understand that families are
    the primary caregivers to individuals with brain injury. Indeed, no
    state has a full array of services and supports needed following
    injury. States that are not participating in the grant program may not
    have an identified or central contact for individuals and families.
        The Protection and Advocacy TBI (PATBI) Grant Program funds the
    governor-designated P&A in each state and territory at $50,000 to
    provide advocacy assistance in finding, maintaining or advancing in
    employment, finding a home, accessing needed supports and services such
    as personal attendant services, assistive technology, and obtaining
    appropriate mental health, substance abuse, and rehabilitation services
    to avoid institutionalization.
        The TBI Program Reauthorization Act of 2018 authorizes the Centers
    for Disease Control and Prevention to make grants to states to conduct
    TBI surveillance and public education programs. Funding of $7 million
    is needed for these activities. In addition, at least $5 million is
    needed in order for CDC to establish a national surveillance system to
    accurately determine the incidence of sports--and recreation-related
    concussions among youth aged 5 to 21 years as authorized by the TBI
    Program Reauthorization Act of 2018.
                                    contact
        The Brain Injury Association of America is the nation's oldest and
    largest brain injury patient advocacy organization. Our mission is to
    advance brain injury awareness, research, treatment and education that
    improves the quality of life for people affected by brain injury. For
    further information, please contact Susan Connors at
    shconnors@biausa.org.

        [This statement was submitted by Susan H. Connors, President/Ceo,
    Brain Injury Association of America.]
                                     ______

                           Prepared Statement of CAST
        CAST is a non-profit organization that uses educational technology
    coupled with expertise in the learning sciences to ensure all learners
    can and do reach their full potential. Our primary lever for change is
    Universal Design for Learning (UDL), a framework pioneered at CAST that
    harnesses technology and instructional practices to remove barriers to
    learning in digital as well as physical settings. Our aim is to create
    a level playing field where all learners have equitable opportunities
    to succeed.
        UDL encourages the design of flexible learning environments that
    anticipate learner variability and provide alternative routes or paths
    to success; UDL acknowledges that variability across all learners is
    the norm rather than the exception. In support of the important
    portfolio of projects that include investments at the Federal level, in
    fiscal year 2021, CAST requests the following: (1) U.S. Department of
    Education (ED)--continue to fund all education programs at no less than
    the funding levels provided in fiscal year 2020 and prioritize UDL as a
    necessary priority for all competitive grants. (2) U.S. Department of
    Labor (DOL)--require all Federal investments in apprenticeships, career
    training and employment to incorporate UDL as defined in the Higher
    Education Act, and as referenced and endorsed as a best practice in the
    National Technology Plans of 2010 and 2016, as well as the National Ed
    Tech Developer's Guide of 2015.
        We view additional funding appropriated to both the U.S.
    Departments of Education and Labor as an investment in the future. In
    our view, the COVID-19 pandemic is creating an inflection point that
    while unanticipated, can also be viewed as an opportunity to assure
    equitable access to education and workforce training. All students,
    young adults and others seeking an education as well as career
    training, including those who may struggle due to low literacy,
    language, disability or other factors can be taught remotely when they
    have the right technology including accessible materials and when their
    teachers and instructors have the right tools and training.
        CAST is directly engaged with teachers and students across the
    United States in implementing the UDL framework-including during this
    abrupt, nationwide transition to online and remote learning. Without
    question, our work with States, districts, schools, and individual
    educators, as well as students and parents, convinces us that students
    of all ages and their families are depending on us to support them in
    their right to receive a high-quality education, even in these
    difficult circumstances. We urge you to help states and districts
    tackle an unprecedented crisis and turn it into an opportunity that
    changes the future for good.
        Since pioneering UDL more than 30 years ago, CAST has brought UDL
    into K-12 schools, into postsecondary settings and increasingly into
    career and technical education programs. CAST's work is grounded in the
    vision of creating a world where ``learning has no limits.'' UDL is now
    included in every major law impacting America's educational system,
    having emerged as a key element in Federal education policy. By
    investing in expanding both the knowledge and use of UDL, multiple
    Federal agencies, state education systems, school districts, federally
    funded education and labor programs and private foundations have made
    proactive and ``on-the-fly'' individualization of curricula possible in
    practical, cost-effective ways, and helped ensure that many educational
    technologies have built-in supports, scaffolds, and challenges to help
    learners understand, navigate, and engage with the learning
    environment.
        The Subcommittee plays a significant role in ensuring that
    investments continue in UDL so that both education and employment
    settings embrace the framework of UDL to ensure the country's
    educational and economic success. Funding provided annually has
    expanded access to UDL through Title II of the Every Student Succeeds
    Act and the Higher Education Act--to support teacher and school leader
    preparation and professional learning for educators--and through the
    Strengthening Career and Technical Education for the 21st Century Act--
    to support better workforce preparation and employment outcomes for
    special populations including veterans, English learners, and
    individuals with disabilities.
        Research-to-practice initiatives have been successfully seeded
    through ED's Education Innovation and Research programs including Ready
    to Learn as well as in National Activities that fall under the
    Individuals with Disabilities Education Act. Training and Employment
    initiatives for the DOL also receive important funding in support of
    UDL.
        A sample of successful initiatives led by CAST and funded by the
    U.S. Department of Education include:
      --Student Engagement in Science/Social Science: Through the Office of
            Elementary and Secondary Education, CAST led the Co-Organize
            Your Learning (CORGI) project. CORGI is a Google application
            (app) designed for students and teachers to use to
            collaboratively answer questions requiring higher order
            reasoning. CORGI helps students engage in science and social
            science classrooms and enhances their content learning.
            Students involved in the first pilot showed statistically
            significant improvements in U.S. History and Biology. There was
            also a positive differential effect for the students when
            compared with non-participants. CORGI is in its next phase at
            ED and is being used for STEM education in research funded by
            the National Science Foundation which expands the application's
            capacity for use with more students.
      --Digital Learning Materials: Through the Office of Special
            Education, CAST leads the Center on Inclusive Software for
            Learning (CISL) in creating a suite of innovative tools
            designed to support today's diverse learner needs by making
            digital educational materials--including open educational
            resources (OERs)--accessible, flexible, and engaging for all
            students. CISL is exploring key aspects of digital learning
            such as: which learning supports should be prioritized when
            designing curricula? and how can OERs be made more accessible
            across content areas and for various grade levels and types of
            learners?
      --Accessible Educational Materials: Through the Office of Special
            Education, the National Center on Accessible Educational
            Materials (AEM Center) continues to provide resources and
            technical assistance to educators, parents, students,
            publishers, conversion houses, accessible media producers, and
            others interested in providing accessible education materials
            including OERs consistent with Federal requirements under the
            National Instructional Materials Accessibility Standard. CAST
            helps teachers, administrators, assistive technology
            specialists, and curriculum creators to improve and customize
            curriculum to improve student access to materials and
            interoperability with student data, assistive technology, and
            content management systems. This work significantly impacts
            access to education in K-16 settings. CAST is also leading the
            OSEP-supported Center on Inclusive Technology & Education
            Systems, working with LEAs to create and disseminate a
            framework so that educational technology, assistive technology,
            and information technology can be better integrated in support
            of students with disabilities.
      --Teacher Training/Student Engagement (CA, NH, MA, WI): As part of
            the Office of Special State Personnel Development Grants, CAST
            continues to lead statewide initiatives that focus on training
            teachers to build school and district capacity to improve
            student engagement and achievement through use of UDL in
            instructional practice.
      --Science Assessments/STEM Education: CAST has a long list of STEM-
            focused initiatives and the most current focus on:
        --OESE/OSEP: Expansion of Co-Organize Your Learning (CORGI) project
                to enhance student engagement and learning through a Google
                application (app) designed for students and teachers to use
                to collaboratively answer questions requiring higher order
                reasoning.
        --OSEP: To develop and test UDL-aligned science assessments for
                students with significant cognitive disabilities; and,
        --Institute for Education Sciences: To conduct an efficacy trial of
                the UDL for Learning Science Notebook (UDSN), to support
                elementary school students with learning disabilities in
                active science learning. Results have shown the tool's
                supports for science learning and the science inquiry
                process have statistically significant effects on science
                performance and motivation for science learning.
        Also, adoption of UDL in career and technical education (CTE) and
    employment training continues to grow. Examples include:
      --Collaboration with the National Alliance for Partnerships in
            Equity: To support a major initiative to broaden participation
            in STEM and CTE which brings together six intermountain states
            to scale up the use of evidence-based practices already shown
            to improve equity in CTE and increase access to STEM career
            training.
      --Large-Scale Employment Training Initiatives: To ensure UDL is a
            foundational element of national programs like YouthBuild and
            Jobs for the Future.
      --Training CTE Faculty: To bring training to CTE faculty in the
            application of UDL to help their students achieve educational
            and career goals.
        Increasingly, education and training programs of every level and
    type are incorporating significant digital and online components. Yet,
    despite the promise of flexibility, customized, learning solutions, and
    anywhere/anytime educational opportunity often associated with digital
    learning--especially for learners with challenges such as those based
    in poverty, language, disability, or something else, the reality is
    often dismal. Leveraging the UDL framework is essential to mitigating
    the current impact of digital learning because the population of
    digital learners is predictably diverse, and every federally supported
    training program must plan for that to ensure the effectiveness of
    these investments. This urgency is only intensified by the need for the
    U.S. educational system to respond to the COVID-19 pandemic with a
    wholesale shift to digital learning methods. CAST has received numerous
    requests from across the country for guidance during this crisis, and
    we have joined national coalitions and partners to ensure that learning
    will not be limited, even and especially for the country's most
    vulnerable children and youth, in these unprecedented times.
        CAST urges the Subcommittee to further invest in UDL. In doing so,
    Congress would increase the capacity of States, districts and schools
    to provide more robust professional learning and other needed technical
    assistance so that teachers can be provided the tools and resources
    they need to teach and provided educational services and support to
    students. It is imperative that all learners, including first-time
    career seekers or adults desiring new opportunities, have access to
    workforce development and career pathway strategies and programs that
    are designed from the beginning with the variability of their learning
    in mind. Continuing to invest in educational innovations that
    incorporate effective implementation of UDL while prioritizing the need
    to include UDL as part of the infrastructure of workforce and CTE
    faculty training makes sense. As with K-12 education, this need is
    intensified by the retraining that will be required across the country
    as companies and industries adopt new workflow and safety protocols in
    response to COVID-19.
        CAST appreciates the opportunity to provide recommendations to the
    Senate's fiscal year 2021 appropriations bill. We look forward to
    working with you as you develop a final appropriations bill that
    recognizes UDL as a vital component to K-16 education and to increasing
    and sustaining a well-trained and vital workforce.
                                     ______

                    Prepared Statement of the CDC Coalition
        The CDC Coalition is a nonpartisan coalition of more than 140
    organizations committed to strengthening our nation's prevention
    programs. We represent millions of public health workers, clinicians,
    researchers, educators and citizens served by CDC programs. We believe
    Congress should support CDC as an agency, not just its individual
    programs. Although we believe an even more significant increase is
    truly needed to address the nation's current health challenges, at a
    minimum, we urge a funding level of at least $8.3 billion for CDC's
    programs in fiscal year 2021. This request does not reflect any
    additional emergency resources that may be needed to address the
    immediate and ongoing efforts to combat the COVID-19 pandemic. We are
    grateful for the important increases provided for CDC programs in
    fiscal year 2020 and urge Congress to continue efforts to build upon
    these investments to strengthen all of CDC's programs. Additionally, we
    continue to oppose any effort to repeal or cut the Prevention and
    Public Health Fund which makes up about 11 percent of CDC's budget and
    funds critical prevention programs.
        CDC serves as the command center for the nation's public health
    defense system against emerging and reemerging infectious diseases.
    From aiding in the surveillance, detection and prevention of the
    current COVID-19 outbreak globally and in the U.S. to playing a lead
    role in the control of Ebola in West Africa and the Democratic Republic
    of the Congo, to monitoring and investigating disease outbreaks in the
    U.S., to pandemic flu preparedness to combating antimicrobial
    resistance, CDC is the nation's--and the world's--expert resource and
    response center, coordinating communications and action and serving as
    the laboratory reference center for identifying, testing and
    characterizing potential agents of biological, chemical and
    radiological terrorism, emerging infectious diseases and other public
    health emergencies. CDC serves as the lead agency for bioterrorism and
    other public health emergency preparedness and response programs and
    must receive sustained support for its preparedness programs. Given the
    challenges of terrorism and disaster preparedness we urge you to
    provide adequate funding for the Public Health Emergency Preparedness
    grants which provide resources to our state and local health
    departments to help them protect communities in the face of public
    health emergencies. We urge you to provide adequate funding for CDC's
    infectious disease, laboratory and emergency preparedness and response
    activities in order to ensure we are prepared to tackle both ongoing
    COVID-19 pandemic and other public health challenges and emergencies
    that will likely arise during the coming fiscal year.
        Injuries are the leading causes of death for people ages 1-44.
    Unintentional and violence-related injuries, such as older adult falls,
    firearm injury, child maltreatment and sexual violence, account for
    nearly 27 million emergency department visits each year. In 2013,
    injury and violence cost the U.S. $671 billion in direct and indirect
    medical costs. In 2018, opioids killed nearly 47,000 individuals
    nationwide. CDC provides states with resources for opioid overdose
    prevention programs and to ensure that health providers to have
    information to improve opioid prescribing and prevent addiction and
    abuse. In 2018, there were over 39,740 U.S. firearm-related fatalities.
    We thank Congress for providing CDC with dedicated funding for firearm
    morbidity and mortality prevention research and we strongly urge you to
    maintain and increase this funding in fiscal year 2021. The National
    Center for Injury Prevention and Control must be adequately funded to
    conduct research, prevent injuries, and help save lives.
        In 2017, over 647,000 people in the U.S. died from heart disease,
    the nation's number one killer, accounting for about 23 percent of all
    U.S. deaths. More males than females died of heart disease in 2017,
    while more females than males died of stroke that year. Stroke is the
    fifth leading cause of death and is a leading cause of disability. In
    2017, over 146,000 people died of stroke, accounting for about one of
    every 19 deaths. CDC's Heart Disease and Stroke Prevention Program,
    WISEWOMAN, and Million Hearts work to improve cardiovascular health.
    More than 1.8 million new cancer cases and over 600,000 deaths from
    cancer are expected in 2020. In 2015 the direct medical costs of cancer
    was $80.2 billion. The National Breast and Cervical Cancer Early
    Detection Program helps millions of low-income, uninsured and medically
    underserved women gain access to lifesaving breast and cervical cancer
    screenings and provides a gateway to treatment upon diagnosis. The
    Colorectal Cancer Control Program focuses on improving screening rates
    among targeted, low-income populations aged 50 -75 years in targeted
    states and territories through evidence-based interventions using
    partner health systems. CDC funds grants to all 50 states, DC, 7 tribes
    and tribal organizations, and 7 U.S. territories and Pacific Island
    jurisdictions to develop comprehensive cancer control plans, bringing
    together public and private stakeholders to set priorities and
    implement cancer prevention and control activities to address each
    state's particular needs.
        Cigarette smoking causes more than 480,000 deaths each year. CDC's
    Office of Smoking and Health funds important programs and education
    campaigns such as the Tips From Former Smokers campaign which has
    already helped more than 500,000 individuals quit smoking and millions
    more to make a serious quit attempt. We must continue to support this
    and other vital programs to reduce the enormous health and economic
    costs of tobacco use in the U.S.
        Of the more than 34 million Americans living with diabetes, more
    than 7 million cases are undiagnosed. Each year, about 1.5 million
    people are newly diagnosed with diabetes. Diabetes is the leading cause
    of kidney failure, nontraumatic lower-limb amputations, and new cases
    of blindness among adults in the U.S. The total direct and indirect
    costs associated with diabetes were $327 billion in 2017. We urge you
    to provide adequate resources for the Division of Diabetes Translation
    which funds critical diabetes prevention, surveillance and control
    programs.
        Obesity prevalence in the U.S. remains high. More than 42 percent
    of adults are obese and 18.5 percent of children ages of 2 to 19 are
    obese. Obesity, diet and inactivity are cross-cutting risk factors that
    contribute significantly to heart disease, cancer, stroke and diabetes.
    The Division of Nutrition, Physical Activity and Obesity funds programs
    to encourage the consumption of fruits and vegetables, encourage
    sufficient exercise and develop other habits of healthy nutrition and
    physical activity and must be adequately funded.
        Arthritis is the most common cause of disability in the U.S.,
    striking more than 54 million Americans of all ages, races and
    ethnicities. CDC's Arthritis Program helps address this growing public
    health challenge and works to improve the quality of life for
    individuals affected by arthritis and we urge you to support adequate
    funding for the program.
        CDC provides national leadership in helping control the HIV
    epidemic by working with community, state, national, and international
    partners in surveillance, research, prevention and evaluation
    activities. CDC estimates that about 1.1 million Americans are living
    with HIV with 14 percent undiagnosed. Prevention of HIV transmission is
    the best defense against the AIDS epidemic. Sexually transmitted
    diseases continue to be a significant public health problem in the U.S.
    Nearly 20 million new infections occur each year. STDs, including HIV,
    cost the U.S. healthcare system almost $16 billion annually.
        The National Center for Health Statistics collects data on chronic
    disease prevalence, health disparities, emergency room use, teen
    pregnancy, infant mortality and causes of death. The health data
    collected through the Behavioral Risk Factor Surveillance System, Youth
    Risk Behavior Survey, Youth Tobacco Survey, National Vital Statistics
    System, and National Health and Nutrition Examination Survey must be
    adequately funded.
        CDC's REACH program helps communities address serious disparities
    in infant mortality, breast and cervical cancer, cardiovascular
    disease, diabetes, HIV/AIDS and immunizations by supporting community-
    based interventions and we urge the committee to provide continued
    funding for these important activities.
        CDC oversees immunization programs for children, adolescents and
    adults, and is a global partner in the ongoing effort to eradicate
    polio worldwide. Childhood immunizations provide one of the best
    returns on investment of any public health program. For every dollar
    spent on childhood vaccines to prevent thirteen diseases, more than $10
    is saved in direct and indirect costs. Over the past 20 years, CDC
    estimates childhood immunizations have prevented 732,000 deaths and 322
    million illnesses. We urge you to provide adequate funding for the
    Section 317 Immunization program and other efforts to prevent vaccine-
    preventable disease.
        Birth defects affect one in 33 babies and are a leading cause of
    infant death in the U.S. Children with birth defects that survive often
    experience lifelong physical and mental disabilities. Approximately one
    in six U.S. children is living with at least one developmental
    disability and one in four adults live with a disability. The National
    Center on Birth Defects and Developmental Disabilities conducts
    programs to prevent birth defects and developmental disabilities and
    promote the health of people living with disabilities and blood
    disorders.
        CDC's National Center for Environmental Health funds programs to
    control asthma, protect from threats associated with natural disasters
    and climate change, reduce, monitor and track exposure to lead and
    other environmental health hazards. Increased funding for CDC's
    environmental health prevention activities within NCEH will help reduce
    illness, disease, injury and even death.
        In order to meet the many ongoing public health challenges facing
    the nation, including those outlined above, we urge you to support, at
    a minimum, our fiscal year 2021 request of at least $8.3 billion for
    CDC's programs.

        [This statement was submitted by Don Hoppert, Director, Government
    Relations, American Public Health Association.]
                                     ______

    Prepared Statement of the Center for Studies in Demography and Ecology,
                            University of Washington
        I am writing on behalf of the hundreds of research scientists at
    the University of Washington who rely on high quality demographic and
    vital statistics data for understanding and explaining the state of our
    nation's and communities' health and wellbeing. In this time of
    pandemic crisis, we are all made aware of the incredible and important
    need for high quality vital statistics records. That recognition should
    increase the legislative priorities for re-investing in our nation's
    capacities to collect and curate high quality vital statistics records.
    The Friends of NCHS has submitted a recommendation statement and we
    support that statement. Please accept this statement of testimony for
    the Labor-HHS-Education bill.
        We recommend funding level of at least $189 million for the
    National Center for Health Statistics (NCHS) (an increase of $14.6
    million and realignment of $14 million in ongoing transfers), which
    would restore NCHS's budget its inflation-adjusted fiscal year 2010
    funding level, giving it the funding it needs to continue to produce
    its essential existing surveys and reports without interruption while
    being able to invest in desperately needed innovation.
        The investment in transforming NCHS capacity to capitalize on
    survey methodologies, big data and computing will also catalyze
    scientific and public health insights across the nation from small
    localities to major universities. Becoming a gold-standard producer of
    health statistics is a relatively small investment for an extraordinary
    return on public investment.

        [This statement was submitted by Sara Curran, Director, Center for
    Studies in Demography & Ecology, University of Washington.]
                                     ______

      Prepared Statement of the Child Care Access Means Parents in Schools
        Dear Chairmen and Ranking Members,
        As organizations committed to promoting the postsecondary success
    of college students with children, we are writing to express our strong
    support for increasing funding for the Child Care Access Means Parents
    in Schools (CCAMPIS) program to $200 million--the amount needed to
    provide child care support to approximately 2.5 percent of Pell-
    eligible student parents of children ages 0-5. The CCAMPIS program
    provides vital support for the participation and success of low-income
    parents in postsecondary education through the provision of subsidized
    child care, which is widely recognized as one of the most important
    supports for parenting college students. The COVID-19 crisis has put
    into stark relief the challenges student parents--many of whom are also
    working parents--face balancing child care, academics, one job or
    several jobs, and precarious finances, even before the pandemic.
    Quadrupling CCAMPIS funding to $200 million in the Labor-HHS-ED
    appropriations bill would ensure that tens of thousands more parenting
    college students receive the child care assistance they need to
    continue their educational journeys and be successful in college.
        Roughly 4 million college students are parents of dependent
    children, representing more than one in five undergraduates in the
    United States. Many of these student parents are balancing college and
    parenting without the support of a spouse or partner: 1.7 million women
    in college are single mothers. Student parents, and particularly those
    who are single, face acute financial, work, caregiving demands that can
    complicate their ability to persist to graduation. Student parents are
    more likely than other students to live in poverty, to have no
    resources to devote to college costs, and to incur substantial student
    debt--due in large part to the high cost of child care. Student parents
    also spend significant time providing care, with 21 percent of
    community college students spending more than 20 hours per week caring
    for dependents, according to the 2019 Community College Survey of
    Student Engagement.
        Access to affordable child care is one of the most important
    supports that can help student parents succeed in college. Data from
    one community college show, for example, that usage of the campus child
    care center led to a 21 percent increase in degree attainment over the
    rate for student parents who did not access the center. New research
    shows, however, that students often do not have access to affordable
    care--according to a recent survey of roughly 23,000 student parents,
    70 percent of respondents report that their child care arrangement is
    unaffordable. Without affordable child care, student parents are often
    forced to make tough decisions about their educational pursuit: in
    2019, 28 percent of community college students reported that they are
    likely or very likely to leave school due to their caregiving
    responsibilities.
        Unfortunately, campus-based child care has been declining in recent
    years, most dramatically at community colleges where the largest share
    of student parents are enrolled. Exacerbating this decline is the fact
    that, in light of the economic fallout caused by COVID-19, the country
    may lose as many as 4.5 million child care slots. The need for student
    parent access to affordable child care has never been greater than it
    will be as campuses begin to re-open.
        The CCAMPIS program is the only Federal program dedicated solely to
    providing child care assistance for students in postsecondary settings.
    Other available child care assistance, such as subsidies provided
    through the Child Care Development Block Grant, can be hard for student
    parents to access due to restrictive eligibility rules such as work
    requirements and degree limitations. CCAMPIS has no work requirements
    and it helps meet students' need for low-cost child care, enabling them
    to persist in and complete postsecondary credentials, which are
    critical to their families' economic well-being and are associated with
    a range of multigenerational benefits. Increasing the program's funding
    to serve a larger percentage of Pell-eligible students with young
    children would allow the program to reach tens of thousands more
    students, greatly improving their chances of postsecondary success.
        For these reasons, we express our strong support for increasing
    funding for the Child Care Access Means Parents in Schools (CCAMPIS)
    program to $200 million in the fiscal year 2021 Labor-H appropriations
    bill.
        Sincerely,

        All Our Kin
        America Forward
        Augustus F. Hawkins Foundation
        BCC EARLY CHILDHOOD CENTER
        Center for Law and Social Policy (CLASP)
        Charles Stewart Mott Community College
        City University of New York
        Clearinghouse on Women's Issues
        Early Learning Campus, Inc
        Every Child Matters
        Feminist Majority Foundation
        First Focus Campaign for Children
        Florence Darlington Technical College
        Georgia Budget and Policy Institute
        Healthy Teen Network
        Helen Gordon CDC, Portland State University
        Higher Learning Advocates
        Institute for Childhood Preparedness
        Institute for Women's Policy Research (IWPR)
        Jobs for the Future (JFF)
        Los Angeles Valley College Family Resource Center
        Mesa Community College
        Monroe Community College (SUNY)
        National Alliance for Partnerships in Equity (NAPE)
        National Indian Child Care Association
        National Organization for Women
        National Skills Coalition
        National Women's Law Center
        New America Education Policy Program
        One Family
        Oregon State University, Family Resource Center
        Ray Ellison Family Center
        Save the Children Action Network
        Society of Women Engineers
        Southern Illinois University Edwardsville
        St. Louis Community College
        Student Veterans of America
        The Graduate! Network, Inc
        The Hope Center for College, Community, and Justice
        The National Child Care Association (NCCA)
        The National Early Childhood Program Accreditation (NECPA)
        uAspire
        Univ. of Hawaii Bridge to Hope
        University of Delaware
        University of Missouri St. Louis
        University of New Mexico Children's Campus
        Veterans Education Success
        Women Employed
        World Education, Inc.
        Young Invincibles
                                     ______

           Prepared Statement of the Children's Hospital Association
        The Children's Hospital Association (CHA) advances child health
    through innovation in the quality, cost and delivery of care.
    Representing more than 220 institutions, CHA is the voice of children's
    hospitals nationally. As organizations dedicated to protecting and
    advancing the health of America's children, we urge the Subcommittee to
    continue advancing children's health by funding CHGME at $465 million.
        A robust pediatric workforce is essential to ensuring that no child
    lacks access to high-quality medical care. The CHGME program supports
    this goal by providing funding for the training of pediatric providers
    at independent children's teaching hospitals, much as Medicare supports
    training in teaching hospitals that serve primarily adults. CHGME
    benefits all children, supporting the training of doctors who go on to
    care for children living in every state--in cities, rural communities,
    suburbs and everywhere in between. As the only providers of the most
    complex pediatric cancer, cardiac, trauma and care for chronically and
    acutely ill infants and children, pediatricians are the primary
    provider for millions of children in need.
        The CHGME program represents our nation's most significant
    investment in strengthening the pediatric workforce. CHGME was created
    in 1999 with bipartisan support when Congress recognized that a
    dedicated source of funding for training the next generation of
    pediatricians and pediatric specialists in children's hospitals was
    crucial. Because we treat children--mostly covered through Medicaid and
    the Children's Health Insurance Program--children's hospitals were
    effectively left out of the Federal GME system of support provided
    through Medicare prior to the establishment of CHGME.
        Since the establishment of the program, CHGME funding has enabled
    children's hospitals to dramatically increase training overall and in
    particular grow the supply of pediatric specialists--the area of
    greatest shortage in children's healthcare. Today, only 1 percent of
    all hospitals in the United States--58 children's hospitals--receive
    CHGME. Yet, these institutions train approximately half of the nation's
    pediatricians--more than 7,000 FTEs annually--including 44 percent of
    all general pediatricians and 57 percent of all pediatric specialists.
        Between 2000 and 2015, CHGME-supported hospitals collectively
    increased the number of residents trained by 113 percent. Today, in the
    majority of pediatric subspecialist fields tracked by the American
    Medical Association, more than 65 percent of residents are trained at
    CHGME hospitals. In some fields, such as pediatric rehabilitation
    medicine, virtually all physicians receive their training at CHGME
    hospitals.\1\
    ---------------------------------------------------------------------------
        \1\ ``Percentage of Pediatric Specialists Trained at CHGME
    Recipient Hospitals,'' Children's Hospital Association fact sheet,
    April 2018.
    ---------------------------------------------------------------------------
        Unfortunately, multiple indicators suggest a crisis is looming for
    children's access to care. Despite progress, we are at risk of falling
    behind on children's health. The current level of support provided for
    training kids' doctors through CHGME is declining against levels
    provided per trainee in the Medicare Graduate Medical Education
    (Medicare GME) program. In fiscal year 2020, CHGME was funded at $340
    million. At that level, the average CHGME payment per full-time
    equivalent (FTE) resident equates to approximately $73,000. By
    comparison, Medicare GME payments to general acute care hospitals are
    approximately $142,000 per resident. This shortfall continues to grow.
    Without additional investments, CHGME funding will decline to 45
    percent of Medicare GME by 2023. By increasing CHGME funding by
    approximately $125 million annually for 3 years, parity between CHGME
    and Medicare GME can be achieved--ensuring a strong pediatric workforce
    pipeline for future generations. A funding level of $465 million for
    fiscal year 2021 is the first step to ensuring the investment in
    training physicians for adults is comparable.
        Even with CHGME, serious pediatric workforce shortages persist
    nationwide--most acutely among pediatric subspecialties. The most
    recent survey data available from children's hospitals shows the
    following wait times for scheduling appointments due to shortages:
      --Genetics--average wait time of 20 weeks
      --Developmental Pediatrics--average wait time of 19 weeks
      --Pain Management/Palliative Care--average wait time of 12 weeks
      --Child and Adolescent Psychiatry--average wait time of 10 weeks
        Beyond these shortages, children's hospitals also currently incur
    significant additional costs to subsidize their teaching mission--costs
    as high as $40 million annually above what they receive from CHGME.
    This growing funding gap isn't sustainable, as it is being made up
    through the clinical operations of our children's hospitals, hospitals
    with the nation's highest Medicaid payer burden. Medicaid reimbursement
    levels in many states remain well below those of private insurance and
    other government programs, particularly as state Medicaid programs have
    been scaled back significantly in recent years. Without strengthening
    CHGME, hospitals will be at risk of cutting training experiences and
    patient care services.
        Increased funding for pediatric workforce training programs is even
    more important as we actively respond to the emergence of COVID-19
    within our communities. Residency and fellowship programs are being
    impacted tremendously during this time due to a shift in healthcare
    services and the need to provide healthcare in a time of crisis. Many
    residents are seeing their programs suspended or are being asked to
    provide services in different capacities. They are being asked to
    balance the needs of their training requirements while providing care
    during a pandemic. Additionally, they are adapting to new training
    platforms and policies to ensure patient safety.
        The healthcare needs of the pediatric population are also
    increasing overall. The number of children with complex medical
    conditions is growing at a faster rate than the overall child
    population, requiring an increasing number of specialty care
    providers.\2\ Strengthening funding for CHGME will help children and
    their families, including those with rare and complex conditions.
    ---------------------------------------------------------------------------
        \2\ 2014 report, ``Summary of Available Evidence and Methodology
    for Determining Potential Medicaid Savings from Improving Care
    Coordination for Medically Complex Children,'' prepared for Children's
    Hospital Association by Dobson DaVanzo & Associates, p. vi.
    ---------------------------------------------------------------------------
        The CHGME program is critical to facing these shortages, protecting
    gains in pediatric health and ensuring access to care for children. Now
    is the time to take a step forward in pediatric medicine--particularly
    during this time of emergency--to ensure our children have access to
    the healthcare services they need.
        Children's hospitals thank you for your past support for this
    critical program and your leadership in protecting children's health.
    We respectfully request that the Subcommittee continue its history of
    bipartisan support for children's health and fund CHGME at $465 million
    in the fiscal year 2021 Labor-HHS appropriations bill.
                                     ______

         Prepared Statement of the Christopher & Dana Reeve Foundation
        Thank you for this opportunity to submit testimony in support of an
    appropriation of $9,700,000 for the Paralysis Resource Center (PRC)
    within the Administration for Community Living (ACL) at the Department
    of Health and Human Services (HHS).
        I am proud to speak on behalf of my daughter, Ellie, who is of the
    1 in 50 Americans living with paralysis, who rely on programs like the
    Paralysis Resource Center to live independent and empowered lives. The
    Reeve Foundation has operated the Paralysis Resource Center for 18
    years, competing in a rigorous, competitive bidding process every 3
    years for renewal of this grant. For fiscal year 2021, we request
    funding of $9.7 million for the Paralysis Resource Center. Of this
    total, we request that the Committee direct no less than $8.7 million
    to the National Paralysis Resource Center. These requests are in line
    with the final appropriation for fiscal year 2020, and with the
    Administration's fiscal year 2021 Budget Request.
        When Christopher Reeve was paralyzed from the neck down due to a
    spinal cord injury in 1995, his family found themselves in total
    darkness as to what to do next. There was no phone number to call for
    guidance or help. There were no experts reaching out to connect them to
    the right rehabilitation facilities, or to discuss how they could
    support his return home and ongoing well-being. There was certainly no
    promise that an individual living with that level spinal cord injury
    could lead a full and active life as a father and husband. Yet, instead
    of accepting that life with paralysis would be full of limitations, he
    dreamed of a brighter future.
        That was the genesis of the Christopher & Dana Reeve Foundation:
    Christopher's dream to elevate the needs and rights of the 5.4 million
    Americans living with paralysis. But he was far from alone. The real
    drive behind the Paralysis Resource Center came from his wife, Dana. As
    a caregiver herself, she knew that paralyzed individuals and caregivers
    around the country need a centralized place to call for resources and
    expertise.
        Just twenty-four hours after my daughter, Ellie, sustained a spinal
    cord injury, I contacted the Paralysis Resource Center. The same day I
    was told my daughter would probably never walk again; I was offered a
    lifeline. I believe that call turned the nose of the Titanic away from
    the iceberg before it hit us. It altered the course of desperation and
    isolation of what we were dealing with and gave us real hope. I was
    assured that Ellie would drive again, work again and enjoy her life-and
    that the Foundation would hold my hand the entire way.
        Since the PRC opened its doors in 2002, it has served as a free,
    comprehensive, national source of informational support for people
    living with paralysis and their caregivers. Its work is deeply aligned
    with ACL's mission to empower people living with disabilities and older
    adults to live independently and participate in their communities
    throughout their lives. The PRC is the only program of its kind that
    directly serves individuals living with spinal cord injury, MS, ALS,
    stroke, spina bifida, cerebral palsy and other forms of paralysis. The
    services and programs described below would not be possible without the
    ongoing support of this Subcommittee.
    The PRC's Core Programs
        Information Specialists.--One of the PRC's most essential functions
    is the team of certified, trained Information Specialists (IS) who
    provide personalized support on how to navigate the challenges of life
    with paralysis. This team of experts, many living with paralysis
    themselves, are often the first port of call for individuals who are
    newly injured or diagnosed. This is especially critical as we face the
    current COVID-19 public health emergency. The IS team is providing up-
    to-date information on how best to care and protect oneself during this
    exceptionally difficult and uncertain time for the world.
        To date, our Information Specialists have provided direct
    counseling to over 111,000 people. We have distributed 210,000 copies
    of our Paralysis Resource Guide, which is a staple in hospitals and
    rehabilitation facilities across the country.
        Peer & Family Support Program.--A second pillar of the PRC is our
    Peer & Family Support Program. This program is born of the idea that
    the best source of knowledge is experience: and that peer-to-peer
    connections empower not only the newly-paralyzed individual, but also
    the mentor. Through the PRC, more than 423 peer mentors have been
    trained and certified in 41 states and Washington, DC. These
    individuals have mentored 12,450 peers, including 3,624 caregivers.
        Quality of Life Grants Program.--Our third pillar, the Quality of
    Life Grants Program, operates at the community level to fund nonprofit
    initiatives in all 50 states. Since 1999, the Quality of Life Grants
    Program has directed over $28 million dollars to assist 3,150 projects.
    This program has increased employment trainings and accessible
    transportation; established adaptive sports programs and camps for
    children; improved access to buildings, playgrounds and universities;
    helped individuals learn how to manage their financial well-being, and
    provided support services for veterans. Critically, these programs use
    the public attention that comes from receiving PRC funding--often
    fairly small grants--to raise additional funds in their community,
    creating a powerful return on investment.
        Military & Veterans Program; Multicultural Outreach Program.--The
    PRC has a comprehensive Military and Veterans Program, which provides
    dedicated resources to help individuals navigate military and civilian
    benefits and programs as they reintegrate into their communities. The
    PRC also facilitates a Multicultural Outreach Program that is designed
    to engage and support underserved populations like ethnic minorities,
    older adults, low income earners, and LGBTQ individuals.
        ChristopherReeve.org.--One of the most challenging aspects about
    living with paralysis is combating feelings of isolation and exclusion,
    especially for those who are unable to leave their homes due to
    physical and societal barriers. The Reeve Foundation's website,
    ChristopherReeve.org, provides a vibrant online community and resource
    hub that attracts close to two million visitors per year.
    The Value of Integrated Services
        There are many examples in which an individual living with
    paralysis has not only participated in one program of the PRC, but has
    benefitted from a suite of our free services. When Sterling Thomas, a
    college student from Oklahoma, sustained a spinal cord injury in 2012,
    his family was at a loss as to how to emotionally and physically
    support their son. They turned to the Reeve Foundation's website to
    understand Sterling's prognosis and prepare for his future needs. They
    referred to the Paralysis Resource Guide as a critical tool for
    managing his health, and connected with an Information Specialist who
    provided guidance to further improve Sterling's quality of life. Once
    Sterling and his father felt confident in their path forward, they
    became certified peer mentors through the Peer and Family Support
    Program to help other families in the Oklahoma area navigate life after
    paralysis. And, I am excited to report that the Sterling Thomas ``Push-
    Push-Pray Foundation'' received a Quality of Life grant. Sterling's is
    just one of many stories of how the PRC serves as a lifeline to help
    families from the moment of injury or diagnosis through the many
    chapters of living with paralysis-providing a continuum of care made
    possible by the depth and breadth of the PRC's offerings.
    The Importance of Federal Funding
        I would like to close my remarks by emphasizing why Federal funding
    for this program is so important. Simply put: neither the Reeve
    Foundation, nor any organization competing to run the PRC, could
    provide this type of centralized resource alone. Because many
    individuals, including my daughter, are required to attend
    rehabilitation clinics and/or draw on other resources from out of
    state, nationwide expertise is required. To get the benefit of
    investing in a centralized hub of information, we need to promote and
    deliver these services at scale. Federal funds are essential for this
    valuable, life-changing resource to work.
        Federal funding for the PRC is also a good investment. Our
    resources help people adapt their homes and gain the tools they need to
    return to their communities, and eventually to work. The programs
    funded by the PRC make people less dependent on healthcare providers,
    so they can reduce their medical costs-saving dollars for Medicaid and
    Medicare. Our Military and Veterans Programs provide an essential
    continuum of support for returning heroes as they transition out of the
    VA system. Our national model and household name allows us to leverage
    a small team to have maximum impact. The PRC is smart Federal funding
    at work.
        Christopher Reeve once said, ``Hope is like a lighthouse,'' helping
    individuals who are lost in the darkness find their way. But like a
    lighthouse, hope must be built on solid foundations. The resources,
    support and community created by the PRC are the foundation for hope
    for millions of individuals affected by paralysis around the country. I
    thank you for your ongoing support and urge you to protect the
    Paralysis Resource Center so that individuals nationwide can achieve
    greater quality of life, health and independence. Thank you.

        [This statement was submitted by Jay P. Shephard, Chairman, Board
    of
    Directors, Christopher & Dana Reeve Foundation.]
                                     ______

             Prepared Statement of the Coalition for Clinical and
                             Translational Science
                fiscal year 2021 appropriations recommendations
    _______________________________________________________________________

      --CCTS joins the broader medical research community in asking
            Congress to provide the National Institutes of Health (NIH)
            with at least a $3 billion funding increase for fiscal year
            2021, to bring total agency funding up to a minimum of $44.7
            billion annually.
        --Please provide the Clinical and Translational Science Awards
                (CTSA) program at the National Center for Advancing
                Translational Sciences (NCATS) with at least a $30 million
                increase in dedicated line-item funding for fiscal year
                2021 to bring total support for the program up to a minimum
                of $608 million in annual dedicated funding.
        --Please provide the Cures Acceleration Network (CAN) at NCATS with
                $100 million in dedicated funding for fiscal year 2020, to
                bolster total support for the program and to ensure that
                adequate resources are available to ensure notable
                progress.
        --Please provide the Institutional Development Awards (IDeA)
                program and the Research Centers in Minority Institutions
                (RCMI) program at NIH with meaningful funding increases for
                fiscal year 2021 ($25 million and $12 million respectively,
                consistent with fiscal year 2020 increases).
      --CCTS joins the broader medical research community in asking
            Congress to provide the Agency for Healthcare Research and
            Quality (AHRQ) with a $131 million increase for fiscal year
            2020 to bring total funding up to $471 million annually.
        --Please continue to support research training and career
                development activities at NIH and AHRQ to ensure that the
                next generation of clinical and translational researchers
                is well-prepared.
      --CCTS joins the broader public health community in requesting $8.3
            billion for the Centers for Disease Control and Prevention
            (CDC).
    _______________________________________________________________________

        Chairman Blunt, Ranking Member Murray, and distinguished members of
    the Subcommittee, thank you for considering the views of the clinical
    and translational research community as work on fiscal year 2021
    appropriations. Moreover, thank you for providing NIH with a
    significant $2.6 billion funding increase for fiscal year 2020, and for
    protecting line-item funding for the CTSA program, which provides
    critical infrastructure support to meritorious institutions across the
    country and serves as a major catalyst for advancing the full spectrum
    of medical research at NIH. As you consider fiscal year 2021 funding,
    the community would like to highlight the critical role that clinical
    research infrastructure, the CTSA program, and the full spectrum of
    medical research play in quickly translating scientific advancements
    into therapies, diagnostic tools, and public health information to
    properly address COVID-19 or any other health challenge.
           about the coalition for clinical and translational science
        The Association for Clinical and Translational Science, the
    Clinical Research Forum, the CTSA PIs, and the related stakeholder
    community work together through the Coalition for Clinical and
    Translational Science (CCTS) to speak out with a unified voice on
    behalf of the clinical and translational research community. CCTS is a
    nationwide, grassroots network of dedicated individuals who seek to
    educate Congress and the administration about the value and importance
    of clinical and translational research, and research training and
    career development activities. Our goals are to ensure that the full
    spectrum of medical research is adequately funded, the next generation
    of researchers is well-prepared, and the regulatory and public policy
    environment facilitates ongoing expansion and advancement of the field
    of clinical and translational science.
        about the ctsa program and the full spectrum of medical research
        The CTSA Program was established to disseminate medical and
    population health interventions to patients and populations more
    quickly, and to enable research teams, including scientists, patient
    advocacy organizations and community members, to tackle system-wide
    scientific and operational problems in clinical and translational
    research that no one team can overcome in isolation. The CTSA program
    honors the promise of the Cures Act by improving research
    infrastructure and accelerating the rate at which breakthroughs in
    basic science are translated to innovations with a tangible benefit to
    patients.
        The goals of the CTSA program include; (1) train and cultivate the
    translational science workforce, (2) engage patients and communities in
    every phase of the translational process, (3) promote the integration
    of special and underserved populations in translational research across
    the human lifespan, (4) innovate processes to increase the quality and
    efficiency of translational research, particularly of multisite trials,
    (5) advance the use of cutting-edge informatics.
        The CTSA Program supports a national network of ``hubs'' at
    academic research centers across the country that work collaboratively
    to improve the translational research process to get more treatments to
    more patients more quickly. The hubs collaborate locally and regionally
    to catalyze innovation in research training, tools, and processes.
    Approximately 60 medical research institutions across the nation
    currently receive CTSA program funding, and these hubs work together to
    speed the translation of research discovery into improved patient care
    and public health. Resources appropriated to these hubs allow the
    network to expand to include additional sites, advance science, and
    directly invest in the health workforce of the communities where they
    are located.
        The full spectrum of translational science takes the fruits of
    basic and pre-clinical research and translates them into effective
    clinical care and public health measures, with a focus on having impact
    on health. In order to maximize efficiency and patient-centeredness,
    this research must be done collaboratively and in a systematic way.
    This team-science approach focuses on outcomes and patient/health
    system benefits, rather than the advancement of science for the sake of
    science. There are numerous examples of the success of this approach,
    including the community's annual awards for the ``Top 10'' projects,
    which can be viewed here. In fact, the project studying culturally
    competent healthcare delivery using community barber shops in Los
    Angeles, was highlighted in NCATS' fiscal year 2020 budget request.
        Finally, the appropriations committees have included meaningful
    committee recommendations in the past that have facilitated meaningful
    advancements for the full spectrum of medical research, the CTSA
    program, and career development for early stage investigators and we
    hope similar recommendations will be provided for fiscal year 2021.
        a few recent examples of ctsa program efforts to address covid-19
    University of Alabama at Birmingham
        The UAB CTSA has joined with the Pitt CTSA and NIAID to perform a
    very large serologic surveillance study for antibodies to SARS-CoV2.
    This effort has had >400,000 expressions of interest by respondents and
    we are developing the sampling strategy now. This effort went from the
    first concept call to going live with all approvals in 3 weeks and a
    day.
        The UAB CTSA and its Partner Network have also embarked on a large
    scale whole genome sequencing study of severe COVID-19 disease in the
    special populations we serve in the Deep South to understand the
    disparities in clinical outcome and help identify factors which will
    allow earlier and more effective intervention with immunomodulatory
    agents.
        Working with our CCTS Partner HudsonAlpha, we are developing an
    innovative molecular diagnosis platform based on multiplexed next
    generation sequencing to enable high throughput diagnosis at a
    community and population scale. Further, supporting work with a
    biotechnology company in Maryland, we are developing a nasally
    delivered vaccine to protect against respiratory acquisition of viral
    infection.
        Finally, using the CTSA platform to stand up clinical trials,
    nimbly and effectively, and working with the CTSA consortium's Trial
    Innovation Network, UAB has initiated clinical trials studying the
    efficacy of convalescent plasma (in partnership with Johns Hopkins),
    blockade of interleukin-1 and multiple other studies.
    Vanderbilt University
        The Vanderbilt Institute for Clinical and Translational Research
    made the early decision not to pursue studies that did not have any
    control, and instead chose to focus on randomized clinical trials that
    could provide strong evidence to the U.S. and the world about which
    treatments meet the gold standard for being effective against COVID-19.
    As a direct result of funding through the CTSA program, Vanderbilt was
    positioned to redeploy its clinical research workforce to start up no
    fewer than ten clinical trials in less than 7 weeks. In one example,
    Vanderbilt partnered with the NHLBI-funded PETAL Network to start up
    the multi-site ORCHID trial of hydroxy-chloroquine. The protocol was
    developed, received regulatory approval and funding, and enrolled its
    first patient all in under 14 days. This speed in response was possible
    only because of the common tools and processes that have been built by
    the CTSA Program. REDCap, for example, is a database system developed
    by Vanderbilt and deployed at thousands of institutions across the
    globe at no cost because of support from NIH and the CTSA Program.
    REDCap has been used by state health departments to track the pandemic,
    and is being used by researchers to collect data for hundreds of
    clinical trials and studies of COVID-19.
        An important feature of research institutions enabled by the CTSA
    Program is the ability to be nimble. Traditional clinical trials can
    take a year or more to enroll patients and produce evidence that will
    change practice. The statisticians at Vanderbilt University Medical
    Center, with partners across the country, are pioneering ways of
    monitoring the studies and analyzing data more quickly, so that as soon
    as meaningful information is available it can be used to decide about
    releasing effective drugs, studying new drugs, or stopping studies of
    drugs that do not appear to be effective. The CTSA Program has invested
    in biostatistics and data science as a foundation of learning from data
    in healthcare and clinical trials.
        Vanderbilt is also redirecting other research efforts that have
    utility in COVID-19. For example, every year, more than 300,000 babies
    in the U.S will be born prematurely and cared for in neonatal intensive
    care units (NICUs). Monitoring vital signs in these babies has not
    changed much in 50 years, relying on stiff electrodes glued to the skin
    using strong adhesives coupled to long wires tethered to boxes on the
    wall. For tiny neonates, these wires prevent skin-to-skin contact and
    bonding, frustrate basic nursing care, and often lead to serious skin
    injury; 90 percent of NICU babies will have scars from the very same
    medical equipment keeping them alive. The multidisciplinary research
    team of engineers, neonatologists, nurses, and dermatologists have
    developed a low-cost, skin-like, wireless sensors capable of ICU-grade
    monitoring. No-touch technologies like this are essential in a pandemic
    such as the COVID-19 outbreak, and would not be possible without the
    ongoing and sustained investment in clinical and translational research
    infrastructure.
    Tufts University
        The Tufts Clinical and Translational Science Institute (CTSI) is
    funding a study to assess the effectiveness of a known therapy, called
    infliximab therapy, to reduce the cytokine storm that causes severe
    COVID-19 disease, thereby reducing the need to use a ventilator and,
    most importantly, preventing deaths. Clinical data strongly support the
    rationale for investigating the efficacy and safety of anti-TNFa
    therapy in patients at risk for rapid cardiorespiratory decompensation
    and early mortality from severe COVID-19.
        Rapid testing for COVID-19 is essential for keeping people safe and
    reopening our economy. Toward these goals, Tufts CTSI is funding the
    development of a point-of care test, essentially a ``lab on a chip,''
    that can diagnose both influenza and COVID-19 simultaneously on a large
    scale so that health providers and the public have the information they
    need in real time. Moreover, a CTSI-faculty member at the Tufts CTSI
    partner MIT Institute for Medical Engineering and Science, who worked
    with a team of MIT colleagues to quickly design an alternative face
    shield. This new design was made from inexpensive, easily accessible
    materials, which allowed them to move immediately to mass production.
    They partnered with a manufacturer in Massachusetts to start production
    in record time, which has since expanded internationally. They donated
    the first 100,000 face shields.
    The University of Utah
        The Utah Center for Clinical and Translational Science and its
    community affiliate partner, Intermountain Healthcare--have initiated
    companion trials looking at the impact of hydroxychloroquine on the
    duration of infectivity (viral shedding) and household acquisition of
    COVID-19. This study will create a biobank of samples from COVID-19
    patients to help better understand the virus and potential treatments.
    We have collaborated actively with rural and frontier communities in
    Utah on this study to ensure that all Utahans are able to participate
    in this and all COVID-19-related research. The Utah Trial Innovation
    Center and the Vanderbilt Recruitment Innovation Center jointly
    provided a comprehensive consultation.
        The Utah Data Science Service, a collaboration with University of
    Utah Health, has created a COVID-19 dashboard that is helping the
    hospital track the impact of this epidemic, understand resource
    pressures, and plan to safely reopen. It has also helped inform
    conversations in our State government regarding racial, ethnic, and
    sociodemographic disparities in the impact of COVID-19. Further, the
    biomedical informatics core, in collaboration with the University of
    Buenos Aires is undertaking work to model variations in the Angiotensin
    Converting Enzyme receptor-a major point of entry for SARS-CoV-2 into
    cells to cause infection and disease.

        [This statement was submitted by Harry P. Selker, MD, MSPH,
    Chairman,
    Clinical Research Forum.]
                                     ______

             Prepared Statement of the Coalition for Health Funding
        The Coalition for Health Funding--an alliance of over 93 national
    health organizations representing more than 100 million patients and
    consumers, health providers, professionals and researchers--welcomes
    the opportunity to submit this statement for the record about the
    importance of health funding in the Labor-HHS-Education bill. As a
    coalition, our member organizations speak with one voice before
    Congress and the administration in support of a robustly funded Federal
    health program with the shared goal of improved health and well-being
    for all. Each member organization has their own funding priorities
    within the Department of Health and Human Services (HHS), but we are
    all united in our support of strong, sustained, predictable funding for
    all Federal agencies and programs across the public health continuum.
    The Coalition strongly believes that Congress must support a strong
    302(b) allocation for the L-HHS appropriations bill to ensure we are
    working across the spectrum to protect, promote, and improve the health
    of all Americans.
        As this committee and Congress have demonstrated in the past, with
    strong bipartisan support, HHS agencies have different roles in
    addressing our nation's mounting health demands. Our priorities, while
    different are all interconnected, and the public health continuum is
    only as strong as its weakest link. For example, investment in medical
    research at the National Institutes of Health (NIH) is important,
    however scientific research and development alone does not help treat
    Americans in need. The Food and Drug Administration (FDA) is necessary
    to provide reasonable guidance and lead innovation in clinical trials,
    safeguard patients, ensure medical efficacy, and approve new
    treatments. The Centers for Disease Control and Prevention (CDC),
    Health Resources and Services Administration (HRSA), Substance Abuse
    and Mental Health Services Administration (SAMHSA), and Indian Health
    Service work to ensure we have qualified health professionals who can
    move discoveries from the discovery pipeline to public health delivery,
    while supporting Americans who are awaiting new cures, and prevent them
    from getting sick in the first place. Also, the Agency for Healthcare
    Research and Quality (AHRQ) provides evidence and communicates what
    treatments work for patients helping, health professionals deliver the
    right treatment to right patient at the right time. And finally, the
    Administration for Community Living works to support those who are
    aging and those who have disabilities--as well as their caregivers--so
    that they can live avoid unnecessary costs and live improved lives.
        Despite the importance of these agencies and their programs in
    protecting Americans' lives, Federal spending for public health and
    health research represents has not kept pace with ever increasing
    demands. We thank the Committee for supporting increases in the past.
    We are concerned that the trends over time that have challenged
    discretionary health spending and leave these critical needs woefully
    underfunded. The bill has never received a proportional funding
    increase from previous bipartisan budget deals, and as a result has
    lost almost $16 billion in purchasing power over the last decade; it
    would require a 302(b) allocation of $199 billion to return to the
    fiscal year 2010 level in inflation-adjusted dollars. In fiscal year
    2020 health spending was $184.9 billion in discretionary funding, an
    increase of $4.9 billion over the 2019 enacted level and $43 billion
    over the President's 2020 budget request. To support robust funding,
    the 302(b) allocation for the Labor-HHS-Education Subcommittee must be
    raised to adequately support these important public health funding
    needs. Most recently, for fiscal year 2020 non-defense discretionary
    funding received just a 2.8 percent increase in funding when overall
    non-defense discretionary funding increased by 4.1 percent, leaving
    important services and activities underfunded by billions of dollars.
    The Coalition for Health Funding urges appropriators to ensure that the
    Labor, Health and Human Services, Education, and Related Agencies
    appropriations bill receives an increase for the 302(b) allocation in
    fiscal year 2021 that allows these programs to move past the 2010
    inflation adjusted amount and into a future of stronger funding.
        Addressing research into chronic disease and acute health events
    that cost American lives, pandemic response, disaster recovery, shoring
    up our healthcare delivery infrastructure needs, and support for first
    responders are just some of the challenges on the horizon that
    complicate the subcommittee's work in fiscal year 2021 that are of
    great concern to the Coalition for Health Funding. The Coalition
    strongly believes that COVID-19 pandemic is demonstrating the dire
    price we are paying for neglecting the public health infrastructure and
    healthcare preparedness. For instance, Public Health Emergency
    Preparedness Cooperative Agreement (PHEP) funding has decreased from
    $939 million in fiscal year 2003 to $675 million in fiscal year 2020
    and ASPR's Hospital Preparedness Program (HPP) has been cut from $515
    million in fiscal year 2003 to $275 million in fiscal year 2020. These
    programs are vital to the core infrastructure needed at the Federal,
    state, and local levels to ensure we are prepared for not only
    pandemics but other events such as natural disasters, measles
    outbreaks, and the list goes on and on.
        Finally, the Coalition voices our strong advocacy for the Committee
    and Congress to work together to avoid continuing resolutions (CRs) in
    appropriations process. The Coalition is deeply concerned that
    automatic CRs would harm public health and other domestic programs
    funded through the annual appropriations bills. When the Federal budget
    process breaks down, and CRs are the norm, it creates dysfunction and
    disruption across the entire public health continuum. New initiatives,
    innovations, and hires are put on hold. Procurement cycles lapse.
    Opportunities are lost and ultimately the American people are hurt.
    Automatic CRs would only exacerbate this uncertainty and remove the
    incentives for Congress to complete the appropriations process in a
    timely manner, we fear automatic CRs would ultimately lead to cuts in
    health funding, whether the automatic CR would freeze funding at the
    current year's levels, or require a percentage of cuts.
        We hope in your ongoing deliberations on fiscal 2021 and beyond you
    will recognize the importance of raising the spending caps and consider
    the costs-both real costs and opportunity costs-of spending cuts, and
    the value of all public health and health research programs in
    improving the lives of American families. We look forward to working
    with the subcommittee in these endeavors, and hope you will turn to the
    Coalition for Health Funding as a resource in the future.

        [This statement was submitted by Angela M. Ostrom, J.D., Executive
    Director, Coalition for Health Funding.]
                                     ______

        Prepared Statement of the College on Problems of Drug Dependence
        Thank you for the opportunity to submit testimony in support of the
    National Institute on Drug Abuse. The College on Problems of Drug
    Dependence (CPDD), a membership organization with over 1000 members,
    has been in existence since 1929. It is the longest standing group of
    scholars in the U.S. addressing problems of drug dependence and abuse.
    CPDD serves as an interface among governmental, industrial and academic
    communities maintaining liaisons with regulatory and research agencies
    as well as educational, treatment, and prevention facilities in the
    drug abuse field.
        In the fiscal year 2021 Labor-HHS Appropriations bill, we request
    that the subcommittee provide at least $3 billion above the fiscal year
    2020 level for the National Institutes of Health (NIH), and within that
    amount a proportionate increase for the National Institute on Drug
    Abuse (NIDA) using the Institute's conferenced level of $1,462,016,000
    as NIDA's base budget for Fiscal 2021. In addition, within the NIH
    total, we request at least $500 million for targeted research on opioid
    misuse and addiction, development of opioid alternatives, pain
    management, and addiction treatment, of which at least $250 million is
    allocated to NIDA and included in its base budget for Fiscal 2021.
        We also respectfully request the inclusion of the following NIDA
    specific report language.
        Opioid Initiative. The Committee continues to be extremely
    concerned about the epidemic of prescription opioids, heroin, and
    illicit synthetic opioid use, addiction and overdose in the U.S.
    Approximately 174 people die each day in this country from drug
    overdose (over 100 of those are directly from opioids), making it one
    of the most common causes of non-disease-related deaths for adolescents
    and young adults. This crisis has been exacerbated by the availability
    of illicit fentanyl and its analogs in many communities. The Committee
    appreciates the important role that research plays in the various
    Federal initiatives aimed at this crisis. To combat this crisis, the
    bill includes at least $250,000,000 for research related to preventing
    and treating opioid misuse and addiction. With additional funding for
    NIDA targeted at addressing the opioid epidemic, the Institute's opioid
    specific allocation should be targeted for the following areas:
    development of safe and effective medications and new formulations and
    combinations to treat opioid use disorders and to prevent and reverse
    overdose; conduct demonstration studies to create a comprehensive care
    model in communities nationwide to prevent opioid misuse, expand
    treatment capacity, enhance access to overdose reversal medications,
    and enhance prescriber practice; test interventions in justice system
    settings to expand the uptake of medication assisted treatment and
    methods to scale up these interventions for population-based impact;
    and develop evidence-based strategies to integrate screening and
    treatment for opioid use disorders in emergency department and primary
    care settings.
        Methamphetamines and Other Stimulants. The Committee is concerned
    that, according to the latest data released by the Centers for Disease
    Control and Prevention, the number of deaths from the drug categories
    that include methamphetamine and cocaine more than doubled from 2015-
    2018, leading some to refer to stimulant overdoses as the ``fourth
    wave'' of the current drug addiction crisis in America following the
    rise of opioid-related deaths involving prescription opioids, heroin,
    and fentanyl-related substances. The Secretary has also stated that
    methamphetamine is highly addictive and there are no FDA-approved
    treatments for methamphetamine and other stimulant use. The Committee
    continues to support NIDA's efforts to address the opioid crisis, has
    provided continued funding for the HEAL Initiative, and supports NIDA's
    efforts to combat the growing problem of methamphetamine and other
    stimulant use and related deaths.
        Barriers to Research. The Committee is concerned that restrictions
    associated with Schedule I of the Controlled Substance Act effectively
    limit the amount and type of research that can be conducted on certain
    Schedule I drugs, especially opioids, marijuana or its component
    chemicals and new synthetic drugs and analogs. At a time when we need
    as much information as possible about these drugs to find antidotes for
    their harmful effects, we should be lowering regulatory and other
    barriers to conducting this research. The Committee directs NIDA to
    provide a short report on the barriers to research that result from the
    classification of drugs and compounds as Schedule I substances
    including the challenges researchers face as a result of limited access
    sources of marijuana including dispensary products.
        Raising Awareness and Engaging the Medical Community in Drug Abuse
    and Addiction Prevention and Treatment. Education is a critical
    component of any effort to curb drug use and addiction, and it must
    target every segment of society, including healthcare providers
    (doctors, nurses, dentists, and pharmacists), patients, and families.
    Medical professionals must be in the forefront of efforts to curb the
    opioid crisis. The Committee continues to be pleased with the NIDAMED
    initiative, targeting physicians-in-training, including medical
    students and resident physicians in primary care specialties (e.g.,
    internal medicine, family practice, and pediatrics). NIDA should
    continue its efforts in this space, providing physicians and other
    medical professionals with the tools and skills needed to incorporate
    substance use and misuse screening and treatment into their clinical
    practices.
        Marijuana Research. The Committee is concerned that marijuana
    public policies in the states (medical marijuana, recreational use,
    etc.) are being changed without the benefit of scientific research to
    help guide those decisions. NIDA is encouraged to continue supporting a
    full range of research on the health effects of marijuana and its
    components, including research to understand how marijuana policies
    affect public health.
        Electronic Cigarettes. The Committee understands that electronic
    cigarettes (e-cigarettes) and other vaporizing equipment are
    increasingly popular among adolescents, and requests that NIDA fund
    research on the use and consequences of these devices. The Committee
    also supports the Population Assessment of Tobacco and Health (PATH)
    Study, a collaboration between NIDA and the U.S. Food and Drug
    Administration (FDA) Center for Tobacco Products to help scientists
    learn how and why people start using tobacco products, quit using them,
    and start using them again after they have quit, as well as how
    different tobacco products affect health outcomes over time.
        In addition, we request the following report language within the
    Office of the Director account:
        The HEALthy Brain and Child Development (BCD) Study. The Committee
    recognizes and supports the NIH HEALthy Brain and Child Development
    Study, which will establish a large cohort of pregnant women from
    regions of the country significantly affected by the opioid crisis and
    follow them and their children for at least 10 years. This knowledge
    will be critical to help predict and prevent some of the known impacts
    of pre- and postnatal exposure to drugs or adverse environments,
    including risk for future substance use, mental disorders, and other
    behavioral and developmental problems. The Committee recognizes that
    the BCD Study is supported in part by the NIH HEAL Initiative?, and
    encourages other NIH Institutes, such as NICHD, NIMH, NHLBI, NCI,
    NIAAA, NIMH, NINR, as well as the Office of the Director to support
    this important study.
        Drug abuse is costly to Americans; it ruins lives, while tearing at
    the fabric of our society and taking a financial toll on our resources.
    Over the past three decades, NIDA-supported research has revolutionized
    our understanding of addiction as a chronic, often-relapsing brain
    disease -this new knowledge has helped to correctly emphasize the fact
    that drug addiction is a serious public health issue that demands
    strategic solutions.
        NIDA supports a comprehensive research portfolio that spans the
    continuum of basic neuroscience, behavior and genetics research through
    medications development and applied health services research and
    epidemiology. While supporting research on the positive effects of
    evidence-based prevention and treatment approaches, NIDA also
    recognizes the need to keep pace with emerging problems. We have seen
    encouraging trends in strategies to address these problems, but areas
    of continuing significant concern include the recent increase in
    lethalities due to heroin and synthetic fentanyl, as well as continued
    abuse of prescription opioids. Our knowledge of how drugs work in the
    brain, their health consequences, how to treat people already addicted,
    and what constitutes effective prevention strategies has increased
    dramatically due to research. However, since the number of individuals
    who are affected is still rising, we need to continue the work until
    this disease is both prevented and eliminated from society.
        We understand that the fiscal year 2021 budget cycle will involve
    setting priorities and accepting compromise, however, in the current
    climate we believe a focus on substance abuse and addiction deserves to
    be prioritized accordingly. Thank you for your support for the National
    Institute on Drug Abuse.

                                     ______

        Prepared Statement of the Congressional Fire Services Institute
        Dear Chairman Blunt and Ranking Member Murray,
        On behalf of the nation's fire and emergency services, we write to
    urge your support for a vital program addressing the health and safety
    of our nation's firefighters. As you consider the fiscal year 2021
    Labor, Health and Human Services, Education, and Related Agencies
    Appropriations bill, we urge you to fully fund the National Firefighter
    Registry at the authorized level of $2.5 million. We very much
    appreciate the program being funded at this level in fiscal year 2020
    and we ask that it be maintained this year.
        During the 115th Congress, both the House and Senate unanimously
    approved the Firefighter Cancer Registry Act (Public Law 115-194). The
    bipartisan legislation created a specialized national registry to
    provide researchers and epidemiologists with the tools and resources
    needed to improve research collection activities related to the
    monitoring of cancer incidence among firefighters.
        Studies have indicated a strong link between firefighting and an
    increased risk of several major cancers. However, certain studies
    examining cancer risks among firefighters have been limited by the
    availability of important data and relatively small sample sizes that
    have an underrepresentation of women, minorities, and volunteer
    firefighters. As a result, public health researchers are unable to
    fully examine and understand the broader epidemiological cancer trends
    among firefighters. The National Firefighter Registry is an important
    resource to better understand the link between firefighting and cancer,
    potentially leading to better prevention and safety protocols.
        Thank you for your consideration, and your continued leadership and
    support for America's fire and emergency services.

        Sincerely,

        Congressional Fire Services Institute
        International Association of Arson Investigators
        International Association of Fire Chiefs
        International Association of Fire Fighters
        International Fire Service Training Association
        International Society of Fire Service Instructors
        National Fallen Firefighters Foundation
        National Fire Protection Association
        National Volunteer Fire Council

        [This statement was submitted by Michaela Campbell, Director of
    Government
    Affairs, Congressional Fire Services Institute.]
                                     ______

      Prepared Statement of the Consortium of Social Science Associations
        On behalf of the Consortium of Social Science Associations (COSSA),
    I offer this written testimony for inclusion in the official committee
    record. For fiscal year 2021, COSSA urges the Committee to appropriate:
      --$44.7 billion for the National Institutes of Health;
      --$8.3 billion for the Centers for Disease Control and Prevention,
            including $189 million for the National Center for Health
            Statistics;
      --$471 million for the Agency for Healthcare Research and Quality;
      --$658.3 million for the Bureau of Labor Statistics;
      --$670 million for the Institute of Education Sciences; and
      --$106.1 million for the Department of Education's International
            Education and Foreign Language programs.
        First, allow me to thank the Committee for its long-standing,
    bipartisan support for scientific research. Strong, sustained funding
    for all U.S. science agencies is essential if we are to make progress
    toward improving the health and economic competitiveness of the nation.
    The need for increased investment in science has become even more
    pronounced in light of the ongoing COVID-19 emergency. It is important
    to note that the enclosed requests are for baseline budgets for fiscal
    year 2021 and, without supplemental funding, will not be sufficient in
    making the agencies and programs whole once the pandemic subsides and
    Federal agencies return to regular activity.
                         national institutes of health
        COSSA joins the more than 330 organizations in support of $44.7
    billion for the National Institutes of Health (NIH) in fiscal year
    2021. COSSA appreciates the Subcommittee's leadership and its long-
    standing bipartisan support of NIH, especially during difficult
    budgetary times. However, recent public health events continue to
    underscore the need for additional investment. This funding level is
    important for NIH's baseline, but as previously stated, will not be
    enough to solve the present COVID-19 emergency and prepare for future
    public health crises.
        To be truly transformative, NIH will need to continue to embrace
    research from a wide range of scientific disciplines, including the
    social and behavioral sciences. The Office of Behavioral and Social
    Sciences Research (OBSSR), housed within the Office of the NIH
    Director, coordinates basic, clinical, and translational research in
    the behavioral and social sciences in support of the NIH mission, and
    co-funds highly rated grants in the behavioral and social sciences in
    partnership with individual institutes and centers. Unfortunately,
    OBSSR's budget has been held roughly flat for several years despite the
    sizable increases to the NIH budget. Knowledge about contagion and
    social influences on health are needed now more than ever. In addition,
    understanding behavioral influences on health is needed to battle the
    leading causes of morbidity and mortality, namely, obesity, heart
    disease, cancer, AIDS, diabetes, age-related illnesses, accidents,
    substance abuse, and mental illness. We urge Congress to emphasize
    support for OBSSR and encourage NIH to increase the Office's budget in
    fiscal year 2021.
                   centers for disease control and prevention
        COSSA urges the Subcommittee to appropriate $8.3 billion for the
    Centers for Disease Control and Prevention (CDC), including $189
    million for CDC's National Center for Health Statistics (NCHS). Social
    and behavioral science research plays a crucial role in helping the CDC
    carry out this mission by informing the CDC's behavioral surveillance
    systems, public health interventions, and health promotion and
    communication programs that help protect Americans and people around
    the world from disease. As the Department of Health and Human Services'
    principal statistical agency, NCHS produces data on all aspects of our
    healthcare system, including opioid and prescription drug use, maternal
    and infant mortality, chronic disease prevalence, healthcare
    disparities, emergency room use, health insurance coverage, teen
    pregnancy, and causes of death. As a result of the rising costs of
    conducting surveys and years of flat or near-flat funding, NCHS has had
    to focus nearly all of its resources on continuing to produce the high-
    quality data that communities across the country rely on to understand
    their health. Additional funding would allow NCHS to respond to rising
    costs, declining response rates, and an ever-more complex healthcare
    system and capitalize on opportunities surrounding advances in
    statistical methodology, big data, and computing to produce better
    information more quickly and efficiently, while reducing the reporting
    burden on local data providers.
        Agency for Healthcare Research and Quality
        COSSA urges the Subcommittee to appropriate $471 million for the
    Agency for Healthcare Research and Quality (AHRQ), which would allow
    AHRQ to rebuild portfolios terminated as a result of years cuts and
    expand its research and training portfolio to address our nation's
    pressing and evolving healthcare challenges. AHRQ funds research on
    improving the quality, safety, efficiency, and effectiveness of
    America's healthcare system. It is the only agency in the Federal
    government with the expertise and explicit mission to fund research on
    improving healthcare at the provider level (i.e., in hospitals, nursing
    homes, and other medical facilities). Its work is complementary--not
    duplicative--of other HHS agencies and requires robust support,
    especially in these trying times.
                           bureau of labor statistics
        COSSA urges the Subcommittee to appropriate $658.3 million for the
    Bureau of Labor Statistics (BLS) for its core programs. BLS produces
    economic data that are essential for evidence-based decisionmaking by
    businesses and financial markets, Federal and local officials, and
    households faced with spending and career choices. The BLS, like every
    Federal statistical agency, must modernize in order to produce the gold
    standard data on jobs, wages, skill needs, inflation, productivity and
    more that our businesses, researchers, and policymakers rely on so
    heavily. The requested funding level would allow BLS to continue to
    support evidence-based policymaking, smart program evaluation, and
    confident business investment.
                        institute of education sciences
        COSSA requests $670 million for the Institute of Education Sciences
    (IES) in fiscal year 2021. Within the Department of Education, IES
    supports research and data to improve our understanding of education at
    all levels, from early childhood and elementary and secondary
    education, through higher education. Research further examines special
    education, rural education, teacher effectiveness, education
    technology, student achievement, reading and math interventions, and
    many other areas. IES-supported research has improved the quality of
    education research, led to the development of early interventions for
    improving child outcomes, generated and validated assessment measures
    for use with children, and led to the establishment of the What Works
    Clearinghouse for education research, highlighting interventions that
    work and identifying those that do not. With increasing demand for
    evidence-based practices in education, adequate funding for IES is
    essential to support studies that increase knowledge of the factors
    that influence teaching and learning and apply those findings to
    improve educational outcomes.
             international education and foreign language programs
        The Department of Education's International Education and Foreign
    Language programs play a major role in developing a steady supply of
    graduates with deep expertise and high-quality research on foreign
    languages and cultures, international markets, world regions, and
    global issues. COSSA urges a total appropriation of $106.1 million
    ($95.7 million for Title VI and $10.4 million for Fulbright-Hays),
    which would help make up for lost investment and purchasing power over
    many years of flat-funding. In addition to broadening opportunities for
    students in international and foreign language studies, such support
    would also strengthen the nation's human resource capabilities in
    strategic areas of the world that impact our national security and
    global economic competitiveness.
        Thank you for the opportunity to present this testimony on behalf
    of the social and behavioral science research community.

        [This statement was submitted by Wendy Naus, Executive Director,
    Consortium of Social Science Associations.]
                                     ______

                    Prepared Statement of The Corps Network
        Dear Chairwoman DeLauro, Chairman Blunt, Ranking Member Cole, and
    Ranking Member Murray,
        On behalf of The Corps Network, our 131 member Corps, and the
    25,000 Corpsmembers they annually engage, thank you for your hard work
    in fiscal year 2020 and for the opportunity to share our priorities in
    fiscal year 2021.
        As far back as the 1930s, Conservation Corps have been helping the
    Federal land management agencies complete important and necessary
    projects in a high quality and cost-effective manner. The Civilian
    Conservation Corps (CCC) enrolled approximately 3 million young men
    from 1933-1942; built more than 125,000 miles of roads, 47,000 bridges,
    318,000 dams, and 3,000 fire towers; planted nearly 3 billion trees;
    and developed more than 3 million acres for public use in 854 state and
    94 national parks. The CCC was disbanded in 1942.
        Today's 21st Century Conservation Service Corps provide
    Corpsmembers with opportunities for hands-on job experience, to earn
    certifications, and skills development in leadership, problem-solving
    and teamwork. By partnering with businesses, schools and training
    organizations, Corps help address local workforce needs and create
    pathways to employment while continuing to undertake priority projects
    at all levels of government.
        We respectfully request that you support these fiscal year 2021
    funding levels for programs that support Corps across the country and
    generate significant return on investment for our communities and
    people:
      --Corporation for National and Community Service--AmeriCorps--
            $545,000,000
      --Corporation for National and Community Service--VISTA--$131,000,000
      --Corporation for National and Community Service--NCCC--$42,000,000
      --Corporation for National and Community Service--State Service
            Commissions--$21,000,000
      --Corporation for National and Community Service--National Service
            Trust--$276,000,000
      --Department of Labor--Job Corps--US Forest Service--$1,868,655,000
      --Department of Labor--YouthBuild--$127,500,000
      --Department of Labor--Adult and Youth Training Grants (WIOA)--
            $2,929,323,600
      --Department of Health and Human Services--Community Services Block
            Grant--$798,000,000
    Corporation for National and Community Service
        While there are many critical priorities under your jurisdiction,
    CNCS programs like AmeriCorps meet some of the most vital public needs
    in rural and urban communities around the country, leverage significant
    additional private funding and resources through locally-based
    organizations, and save the government money in the long run. A recent
    study put the return on investment in AmeriCorps at 4:1. Especially in
    a difficult fiscal environment, an investment of taxpayer resources in
    a proven, local partnership-based effort like this makes sense.
        AmeriCorps invests in local, cost-effective, public-private
    partnerships like Corps that generate significant private matching
    funds. In fact, AmeriCorps programs generate more private resources
    than the Federal investment, making this an important partnership to
    attract additional support for important local needs and more
    effectively using taxpayer resources. Corps utilize AmeriCorps to help
    make local, state, and Federal Government more efficient and effective
    by ``putting service to work'' on a variety of cross-jurisdictional
    projects and leveraging limited government funds.
        Last year alone, Corps engaged over 25,000 youth and veterans in
    conservation-related service in all 50 states and DC, Puerto Rico, and
    American Samoa. For example, in fiscal year 2019 Corps built, improved,
    or maintained 13,317 miles of multi-use trails and waterways; restored
    1.4 million acres of wildlife and fish habitat; cleared 66,929 acres of
    invasive species; removed 19,405 acres of hazardous fuels; increased
    access to and utilization of 7,914 recreational facilities; responded
    to 223 wildfires and other natural disasters; preserved 336 historic
    structures, and planted almost 1.1 million trees. Further, they
    leveraged an additional 107,000 volunteers who completed 537,879
    service hours valuing over $13.6 million dollars.
    Corps and AmeriCorps State and National Grants
        Corps have enrolled AmeriCorps members from the beginning: during
    the first full year of AmeriCorps in 1994, 53 Corps received AmeriCorps
    grants. Today, Corps receive AmeriCorps State & National grants that
    are competitively awarded. The AmeriCorps competitive grants category
    includes grants to organizations operating in one state only (state)
    and organizations operating in more than one state (multi). Corps also
    receive funding through their Governor-appointed State Service
    Commissions--the state partners of the Corporation for National and
    Community Service (CNCS).
    Education Award Program (EAP)
        In the last 5 years, roughly 14,700 Corpsmembers have enrolled in
    The Corps Network (TCN) Education Award Program. EAP members work on
    Environmental Stewardship projects in hundreds of communities across
    more than 40 states and DC. Project partners include U.S. Forest
    Service, National Park Service, Bureau of Land Management, U.S. Fish &
    Wildlife Service, as well as state and local partners.
    Opportunity Youth Service Initiative (OYSI)
        Since 2015, over 3,500 Corpsmembers have enrolled into TCN's
    Opportunity Youth Service Initiative (OYSI) Program. The OYSI Program
    is designed to engage youth from disadvantaged backgrounds (e.g.
    economically disadvantaged, unemployed, past court involvement,
    physical or learning disability) in education and conservation service.
    During their term of service, Corpsmembers develop job skills, earn
    certifications, complete their high school requirements, and receive
    assistance in transition to postsecondary education or the workforce.
    Transportation and Infrastructure Program (TIP)
        The Transportation Infrastructure Program (TIP) supports AmeriCorps
    members completing public lands and transportation infrastructure
    projects in multiple communities across 13 states. Since 2019, 156
    Corpsmembers have enrolled in the TIP.
    AmeriCorps Disaster Response Teams (A-DRT)
        AmeriCorps Disaster Response Teams (A-DRT) are a nationally
    deployable asset that engage in critical activities in all phases of
    the disaster cycle. The Corporation for National and Community
    Service's Disaster Services Unit administers the A-DRT AmeriCorps
    program, serving as the coordinating entity for all deployments and
    ensuring appropriate integration into the Incident Command Structure
    (ICS). Corpsmembers receive technical training, have the ability to
    travel with their own gear and equipment, and are a cost-effective
    solution to meeting important recovery needs.
    AmeriCorps National Civilian Community Corps (NCCC)
        AmeriCorps National Civilian Community Corps (NCCC) is a member of
    The Corps Network. AmeriCorps NCCC is a full-time, residential, team-
    based program for young adults ages 18-24. Members develop leadership
    skills, gain life experience, and strengthen communities by completing
    service projects. Many NCCC members will start off in NCCC and
    transition to a Corps, or vice-versa. NCCC crews are also critical to
    disaster response and recovery, and help support other Corps projects.
    Corps coordinate with regional NCCC offices on work plans.
    Department of Labor Programs Supporting Corps
      --Job Corps (US Forest Service)--The US Forest Service operates
            JCCCC's focused on conservation careers and education. They
            offer a proven pathway for disconnected youth to gain education
            and conservation job skills and to get back on track. Several
            Centers administer Advanced Fire Management Training Programs.
            While working on prescribed burns and other non-suppression
            activities, these students earn Public Land Corps non-
            competitive hiring eligibility and gain valuable experience in
            wildland fire.
      --Department of Labor Adult & Youth Training Grants (WIOA)--Congress
            updated the Workforce Investment Act (WIA) to prioritize
            serving disconnected youth, achieving long-term outcomes, and
            enhancing work-based learning, career pathway, and service
            opportunities. Corps provide these critical workforce services
            in communities across the U.S.
      --YouthBuild--Corps are a statutorily eligible applicant for
            YouthBuild grants and manage a significant number throughout
            the country. YouthBuild enrolls low-income young people who
            work toward their GED/high school diploma while learning
            construction skills by building housing for low-income people.
      --Community Services Block Grant--Corps can be administered by
            Community Action Agencies. They also often partner with States
            and Community Action Agencies to carry out projects funded by
            this grant.
        As you can see, CNCS and DOL support many important initiatives
    that engage a diverse population of youth serving in Corps including
    veterans, Native youth and individuals with disabilities. Through your
    support, we can provide more service opportunities for our youth and
    veterans to reengage in education, hard work, and their communities and
    get on a productive path for America's continued growth and prosperity.
        Thank you for the opportunity to provide written testimony for the
    record. We again respectfully urge your support for CNCS fiscal year
    2021 and increased funding for these critical programs for thousands of
    communities and every state around the country. Thank you for your time
    and consideration of this testimony.
        Sincerely.

        [This statement was submitted by Mary Ellen Sprenkel, President &
    CEO, The Corps Network.]
                                     ______

         Prepared Statement of the Council of Academic Family Medicine
        The member organizations of the Council of Academic Family Medicine
    (CAFM) are pleased to submit testimony on behalf of programs under the
    jurisdiction of the Health Resources and Services Administration (HRSA)
    and the Agency for Healthcare Research and Quality (AHRQ). CAFM
    collectively includes family medicine medical school and residency
    faculty, community preceptors, residency program directors, medical
    school department chairs, research scientists, and others involved in
    family medicine education. We urge the Committee to appropriate at
    least $60 million for the Primary Care Training and Enhancement
    program, authorized under Title VII, Section 747 of the Public Health
    Service Act HRSA. In addition, we recommend the Committee fund the AHRQ
    at a level of at least $471 million and $5 million dedicated to AHRQ's
    Center for Primary Care Research.
        More than 44,000 primary care physicians will be needed by 2035,
    and current primary care production rates will be unable to meet the
    demand, according to the authors of a recent article in Annals of
    Family Medicine (Petterson, et al Mar/Apr 2015). The primary care
    training and enhancement programs and AHRQ research enhance our
    nation's workforce and health infrastructure, improving primary care
    services that produce better health outcomes and reduce healthcare
    costs.
    Primary Care Training and Enhancement--Title VII
        The Primary Care Training and Enhancement Program (Title VII,
    Section 747 of the Public Health Service Act) has a long history of
    funding training of primary care physicians. As experimentation with
    new or different models of care continues, departments of family
    medicine and family medicine residency programs will rely further on
    Title VII, Section 747, grants to help develop curricula and research
    training methods for transforming practice delivery. Future training
    needs include: training in new clinical environments that include
    integrated care with other health professionals (e.g. behavioral
    health, care coordination, nursing, oral health); development and
    implementation of curricula to give trainees the skills necessary to
    build and work in inter-professional teams that include diverse
    professions; and development and implementation of curricula to develop
    leaders and teachers in practice transformation. Moreover, new
    competencies are required for our developing health system.
        The Advisory Committee on Training in Primary Care Medicine and
    Dentistry December 2014 report states that ``[r]esources currently
    available through Title VII, Part C, sections 747 and 748 have
    decreased significantly over the past 10 years, and are currently
    inadequate to support the [needed] system changes.'' \1\ In order to
    address some of these challenges, the Advisory Committee recommended
    that Congress increase funding levels for training under the primary
    care training health professions program to meet the pent-up demand
    caused by reduced and stagnant funding levels. We are pleased that
    Congress increased spending for primary care training and enhancement
    in fiscal year 2018 and continued such funding. We are hopeful that the
    Committee will realize the need for continued and increased funding to
    allow for a more extensive support across the nation for schools and
    residency programs whose trainees are on the forefront of addressing
    challenges in primary care.
    ---------------------------------------------------------------------------
        \1\ http://www.hrsa.gov/advisorycommittees/bhpradvisory/actpcmd/
    Reports/eleventhreport.pdf.
    ---------------------------------------------------------------------------
        Primary care health professions training grants under Title VII are
    vital to the continued development of a workforce designed to care for
    the most vulnerable populations and meet the needs of the 21st century.
    We urge your continued down payment for this program and an increase in
    funding levels to $60 million in fiscal year 2021 to allow for a robust
    competitive funding cycle.
        This funding level will help continue important Title VII programs
    such as The Preparing Primary Care Trainees to Transform Health Care
    Systems program at the Kirksville College of Osteopathic Medicine in
    Missouri. This program uses grant funding to create enhanced primary
    care didactics, contextual clinical learning activities and assessments
    and leadership tracks to prepare students and facility for practice in
    changing and diverse health systems.
    Agency for Health Care Research and Quality (AHRQ)
        Primary care clinical research is a core function of AHRQ. Primary
    care research includes: translating science into patient care, better
    organizing healthcare to meet patient and population needs, evaluating
    innovations to provide the best healthcare to patients, and engaging
    patients, communities, and practices to improve health. AHRQ has proved
    to be uniquely positioned to support best practice primary care
    research and to help disseminate the research nationwide. However,
    reduced levels of AHRQ funding in the past have exacerbated disparities
    in funding primary care research.
        AHRQ is in a unique position to further primary care clinical
    research as well as the implementation science to identify how to
    deploy new knowledge into the hands of primary care providers and
    systems in communities. However, more funding is needed to accomplish
    these goals. For this reason, we are supporting additional overall
    funding increases for fiscal year 2021 to the level of $471 million as
    well as specific funding for the Center for Primary Care Research of $5
    million to help coordinate and direct primary care research funding at
    AHRQ. We hope additional funding will continue and expand the following
    goals: (1) development of clinical primary care research and
    researchers (2) real world application of evidence, (3) the process of
    practice and health system transformation, (4) how high functioning
    primary care systems and practices should look, (5) how primary care
    practices serving rural and other underserved populations adapt and
    survive, and (6) how health extension systems serve as connectors of
    research institutions with practices and communities.
        AHRQ research is used by practices and universities across the
    nation. This funding level will help continue important programs such
    as the one at University of Washington. The University of Washington
    used funding from AHRQ to develop a system to incorporate Patient-
    Reported Outcomes (PRO) into clinical assessments and decisionmaking
    leading to improved patient-provider communication, patient
    satisfaction, and treatment monitoring. The project employs systems
    engineering methods, human-centered design, and mixed-research methods
    to develop more effective integration of PRO data into patient care
    activities through health information technology.
        Highlighting the success of AHRQ's patient safety initiatives, a
    2014 \2\ report showed hospital care to be much safer in 2013 compared
    to 2010. The report noted a decline of 17 percent in hospital-acquired
    conditions, in harm to 1.3 million individuals, as well as 50,000 lives
    saved, and $12 billion in reduced health spending during that period.
    AHRQ supports this research that is essential to create a robust system
    for our nation that delivers quality of care while reducing the rising
    cost of care.
    ---------------------------------------------------------------------------
        \2\ Publication # 15-0011-EF.
    ---------------------------------------------------------------------------
        In AHRQ's recent report, ``Potentially Preventable Readmissions:
    Conceptual Framework to Rethink the Role of Primary Care,'' AHRQ
    rethinks primary care as an ``integrator'' able to work alongside sub-
    specialty physicians and hospitals to provide more comprehensive care.
    Most hospital readmissions occur within the 14-day window that a
    patient is supposed to follow up with their primary care doctor. By
    involving the primary care team during hospitalization and in the
    subsequent 14-day window, hospital readmissions can be significantly
    reduced. However, to accomplish this goal, AHRQ needs increased
    funding.
        CAFM is grateful Congress included report language in fiscal year
    2020 stating that Congress ``supports primary care clinical research
    and dissemination as a core function of AHRQ.'' As we look to the
    future, this core function can only be expanded by increasing the
    funding of the agency as a whole, and supporting specific funding for
    the Center for Primary Care Research at AHRQ to provide a true
    coordinating center for primary care research at AHRQ.
    Enhanced Funding for COVID-19 Recovery
        COVID-19 has created both short and longer-term primary care needs.
    The following items merit funding to help our research and training
    infrastructures adjust to COVID related primary care needs.
    AHRQ Funding $130 Million
      --$80 million--for telehealth questions and general broad-based study
            on training needs (workforce).
      --$50 million--on questions of deferred primary care, practice
            changes and training and supervision, physical and emotional
            burden on providers, patients, community; analyses regarding
            reduction--what services found aren't really necessary, but
            used for billing purposes, special needs for rural and
            underserved areas.
    Title VII Section 747 Funding $125 Million
      --Funding for both residencies and departments--faculty retention,
            public health competencies, recruit and retain students into
            primary care, develop new curriculum in this regard; other
            curriculum related to pandemic, and address segmented primary
            care workforce in an effort to reduce delivery system division
            and increase full scope primary care providers.
        In conclusion, we support increased funding for AHRQ at the level
    of $471million for fiscal year 2021 which would support important
    primary care and health services research efforts. We also support $5
    million in new funding for the Center for Primary Care Research.
        CAFM looks forward to working with the Subcommittee to protect HRSA
    primary care programs and AHRQ--both entities which enhance our
    nation's primary care workforce and infrastructure.

        [This statement was submitted by Deborah S. Clements, MD, FAAFP,
    Chair, Council of Academic Family Medicine.]
                                     ______

                Prepared Statement of the Council of State and
                          Territorial Epidemiologists
        Chairman Blunt, Ranking Member Murray, and members of the
    subcommittee, I am Janet Hamilton, Executive Director at the Council of
    State and Territorial Epidemiologists (CSTE). CSTE is organization of
    56 member states and territories representing applied public health
    epidemiology and serves as the professional home for over 2,000 applied
    public health epidemiologists nationwide. As the subcommittee works on
    the fiscal year 2021 Labor, Health and Human Services, Education, and
    Related Agencies appropriations bill, we respectfully request that you
    appropriate at least $100 million to the Centers for Disease Control
    and Prevention's (CDC) Public Health Scientific Services for the Data
    Modernization Initiative that will transform public health and save
    lives.
        As part of a multi-billion dollar investment over the next decade,
    sustained annual funding of at least $100 million will allow CDC and
    public health departments to move from sluggish, manual, paper-based
    data collection to seamless, automated, interoperable, and secure data
    systems that yield critical health information in real-time. This
    funding would also modernize the public health workforce by training,
    recruiting, and retaining skilled data scientists. Data systems require
    adept staff to use them, maintain them, interpret the data, and develop
    and deploy actionable public health interventions to save lives.
        The COVID-19 pandemic has acutely highlighted that public health
    threats are persistent and consistently evolving here at home and
    overseas. Effective prevention and efficient, timely, responses rely on
    the integrated network of governmental public health agencies at the
    Federal, state, local, tribal, and territorial levels working with
    healthcare providers and the public. Each day, this network saves lives
    by monitoring the health of the population and detecting,
    investigating, and responding to health threats.
        Unfortunately, the nation's public health data systems are
    antiquated, rely on obsolete information sharing methods and are in
    dire need of security upgrades. Lack of interoperability, reporting
    consistency, and data standards leads to errors in quality,
    completeness, timeliness, and communication. Sluggish, manual
    processes--paper records, phone calls, spreadsheets, and faxes
    requiring manual data entry--still in widespread use have important
    consequences, most notably delayed detection and response to public
    health treats of all types: chronic, emerging, and urgent.
        COVID-19 has highlighted significant gaps in today's public health
    infrastructure:
      --Lack of seamless, interoperable data sharing across public health
            partners
        --Data on COVID-19 cases are managed electronically at the state/
                local public health department, but cannot be seamlessly
                shared with CDC. Data are often re-keyed to report critical
                details from states to the CDC; manual efforts are time
                consuming; data may not be submitted for days despite it
                being stored in an electronic system.
        --Data collection and transmission for persons under investigation
                is manual: pen and paper, Excel spreadsheets, phone calls
                to healthcare providers and laboratories and from state/
                local public health to CDC.
      --No process to order COVID-19 laboratory tests electronically
        --The process for submitting specimens for testing is entirely
                paper-based requiring multiple phone calls to assign person
                under investigation numbers, and complete paperwork for
                laboratory submission;
        --All test results are returned via manual processes--phone calls
                and faxes-and must be manually entered by staff.
      --No electronic case reporting to share data between healthcare and
            public health
        --Healthcare providers already have basic clinical data of COVID-19
                patients (symptoms, pregnancy status, hospitalization, ICU
                status) stored and collected in electronic health records
                but are submitting paper forms and are unable to rapidly
                share these data or submit electronic case reports to
                public health; data must be hand entered into databases.
                Delays occur, and providers are often too busy to manually
                submit these critical data for days or at all.
      --Emergency departments do not participate in public health syndromic
            surveillance systems
        --Approximately 30 percent of all emergency department visits are
                not submitted to CDC's National Syndromic Surveillance
                Program; urgent care data are almost entirely absent.
        --Early detection of COVID-19 through patients presenting at
                emergency departments was missed.
      --Paper filing of death certificates
        --Some states still file death certificates on paper requiring them
                to be manually requested and processed by the health
                department;
        --There is no link between medical examiners/coroner's data systems
                to the public health department.
        These gaps lead to slow, cumbersome data exchanges resulting in
    sluggish efforts to respond effectively with the speed and intensity
    the COVID-19 pandemic demands.
        Public health professionals, providers, policymakers, and the
    public will all agree that we need a 21st Century public health
    surveillance system to protect health. In fiscal year 2020, Congress
    made an important initial down payment of $50 million in new funds to
    launch the Data Modernization Initiative. CSTE and our partners in this
    effort--APHL, NAPHSIS, and HIMSS--represent a diverse group of
    patients, consumers, public health professionals, healthcare providers,
    and health systems. We encourage you to continue to prioritize the Data
    Modernization Initiative at CDC and public health departments. Public
    health data systems have fallen behind over the past decade because
    crosscutting resources have not been available, and we must not allow
    this initial $50 million investment become obsolete. We must build upon
    the improvements made and continue to provide adequate resources for
    public health to implement advance technologies and train the next
    generation of data scientists.
        In your ongoing deliberations on fiscal year 2021 and beyond, CSTE
    hopes you will consider the Data Modernization Initiative. Data and
    workforce are the lifeblood of public health action. This effort must
    continue to be funded with new money, rather than supplant with already
    underfunded public health programs. A robust, sustained commitment to
    transform today's public health data system will ultimately improve
    Americans' health. We look forward to working with the subcommittee in
    these endeavors and hope you will turn to the CSTE as a resource in the
    future.

        [This statement was submitted by Janet Hamilton, Executive
    Director, Council of State and Territorial Epidemiologists.]
                                     ______

        Prepared Statement of the Council on Social Work Education and
                      National Association of Social Work
        Dear Chairman Blunt and Ranking Member Murray,
        On behalf of the Council on Social Work Education (CSWE) and the
    National Association of Social Work (NASW), thank you for your
    continued support of the social work profession and social work
    education. CSWE is a nonprofit national association representing over
    800 accredited baccalaureate and master's degree social work programs,
    as well as individual social work educators, practitioners, and
    agencies dedicated to advancing quality social work education. NASW
    represents the social work profession, supporting the professional
    growth and development of its 120,000 members by creating and
    maintaining professional standards, and advancing sound social
    policies. We appreciate your efforts and leadership on issues that
    impact social work, social work education, and the wellbeing of
    individuals, families, and communities and social and economic justice.
        We encourage you to consider the following appropriations requests
    that will support social work in the fiscal year 2021 appropriations
    process. Federal funding helps strengthen the pipeline of social
    workers, addresses the needs of vulnerable and at-risk populations, and
    supports students, including those from disadvantaged backgrounds.
    Social worker practice in a diversity of fields including child
    advocacy, geriatrics, school social work, healthcare and other fields.
    As policymakers continue to focus on the social determinants of health,
    support for social workers, who are the workforce at the center of
    addressing these social factors, will be critical.
        Our organizations strongly support efforts to boost critical
    funding at the Department of Health and Human Services for behavioral
    health initiatives, including the Community Mental Health Services
    Block Grant, the National Child Traumatic Stress Network, the Centers
    for Disease Control and Prevention, Substance Abuse and Mental Health
    Services Administration, and Health Resources and Services
    Administration programs.
        Below are the funding CSWE and NASW request for critical programs
    in fiscal year 2021. We respectfully ask for your support of these
    requests during the fiscal year 2021 appropriations process.
              health resources and services administration (hrsa)
      --$790 million for the HRSA Title VII: These programs improve access
            to and quality of care for vulnerable populations. Public
            health threats continue to impact patients across the country,
            such as substance use disorder epidemics. Titles VII programs
            are essential to addressing the health challenges of today and
            the future.
      --$30 million for the Mental Health and Substance Use Disorder
            Workforce Training Demonstration Program: CSWE and NASW support
            funding for interprofessional training, including social
            workers, Nurse Practitioners, Physician Assistants, and health
            service psychologists. It is vital that the Demonstration
            supports the training of all eligible providers, including
            social workers, to ensure that mental and substance use
            disorder services in underserved community-based settings
            integrate primary care and mental and substance use disorders
            services.
           substance abuse and mental health services administration
      --$757.5 million for Community Mental Health Services Block Grant
      --$2.3 billion for Substance Abuse Prevention and Treatment Block
            Grant
      --$38.5 billion in emergency funding to organizations that primarily
            treat individuals with behavior health concerns and/or
            Substance Use Disorders and use evidence-based practices, with
            a significant portion of these emergency funds set aside for
            organizations enrolled in Medicaid as a result of the COVID-19
            epidemic.
                            department of education
      --$7,000 in fiscal year 2021 for the maximum individual Pell Grant.
            The Pell Grant Program is the foundation of financial aid for
            low-income students. Unfortunately, the purchasing power of the
            Pell Grant has continuously declined since the program's
            inception in the 1970s, shouldering students with a growing
            share of the cost of college.
      --Support for Public Service Loan Forgiveness (PSLF) Programs.
                      national institutes of health (nih)
      --$44.7 billion for the National Institutes of Health.
        Sincerely.

        [This statement was submitted by Darla Spence Coffey, PhD, MSW,
    President and Chief Executive Officer, Council on Social Work Education
    and Angelo McClain, PhD, LICSW, Chief Executive Officer, National
    Association of Social Workers.]
                                     ______

           Prepared Statement of the Council on Social Work Education
        Dear Chairman Blunt and Ranking Member Murray,
        On behalf of the Council on Social Work Education (CSWE), thank you
    for your continued support for social work and social work education.
    CSWE is a nonprofit national association representing over 800
    accredited baccalaureate and master's degree social work programs, as
    well as individual social work educators, practitioners, and agencies
    dedicated to advancing quality social work education. We appreciate
    your efforts and leadership on issues that impact social work, social
    work education, and the wellbeing of individuals, families, and
    communities and social and economic justice.
        We encourage you to consider the following appropriations requests
    that will support social work programs and social work students in the
    fiscal year 2021 appropriations process. Pressing societal challenges
    like the opioid crisis and other substance-use issues, growing mental
    and behavioral health needs, workforce shortages, and rising higher
    education costs, are just some of the challenges facing social work
    students and practitioners. Your support of these appropriations
    requests will help meet these challenges.
        Federal funding helps strengthen the pipeline of social workers,
    addresses the needs of vulnerable and at-risk populations, and supports
    students, including those from disadvantaged backgrounds. Social work
    students go on to work in a diversity of fields including child
    advocacy, geriatrics, school social work, healthcare and other fields.
    As policymakers continue to focus on the social determinants of health,
    support for social workers, who are the workforce at the center of
    addressing these social factors, will be critical. CSWE's fiscal year
    2021 requests (as detailed below) illustrate support for important
    programs that address vital health workforce needs, provide invaluable
    student aid, address the social determinants of health, and promote
    important health-care research.
        Below is the funding CSWE supports for critical programs in fiscal
    year 2021. We respectfully ask for your support of these requests
    during the fiscal year 2021 appropriations process.
                  health resources and services administration
      --$116.280 million for HRSA's Behavioral Health Workforce Education
            and Training (BHWET) program. CSWE was pleased to see
            continuous investments for the BHWET program in the fiscal year
            2020 Labor-HHS-ED appropriations bill. BHWET supports the
            recruitment and education of behavioral health-care providers,
            which is critical as the nation continues to combat the opioid
            crisis and substance use disorders. The number of training
            programs supported by BHWET has grown tremendously over the
            past several years, particularly amongst social workers.
            According to a June 2018 HRSA study, out of the 4,618
            behavioral health professionals participating in the BHWET
            program, 3,523 included new social workers.\1\ In 2018, a new
            four-year competition awarded social work programs over $17
            million a year to help develop and expand the behavioral health
            workforce serving populations across the lifespan, including in
            rural and medically underserved areas. As the nation's demand
            for well-equipped behavioral health-care providers continues to
            grow, we hope you will support $116,280,000 million for BHWET
            in fiscal year 2021.
    ---------------------------------------------------------------------------
        \1\ Closing Behavioral Health Workforce Gaps: A HRSA Program
    Expanding Direct Mental Health Service Access in Underserved Areas;
    American Journal of Preventive Medicine.
    ---------------------------------------------------------------------------
      --$58.675 million for Scholarships for Disadvantaged Students. This
            program helps ensure that the United States has the pipeline of
            health professionals to meet health needs of underserved
            individuals and communities. Furthermore, this program provides
            much needed opportunities for students from disadvantaged
            backgrounds.
      --$51 million for the Geriatrics Workforce Enhancement Program
            (GWEP). GWEP supports training and educating health
            professionals, including social workers, as well as direct care
            workers, and family caregivers in the care of older adults. It
            is the only Federal program that focuses on developing a
            health-care workforce that maximizes patient and family
            engagement while improving health outcomes for older adults.
            GWEPs are successfully integrating and equipping a primary care
            workforce and family caregivers with the knowledge and skills
            to care for older adults and build community networks to
            address gaps in healthcare for seniors.
      --$10 million for continued support of a demonstration program to
            strengthen the mental and substance disorders workforce.
      --$25 million for continued support of the Loan Repayment Program for
            Substance Use Disorder Treatment Workforce.
           substance abuse and mental health services administration
      --$15.70 million for the Minority Fellowship Program (MFP). For more
            than 45 years, MFP has been increasing the number of
            professionals preparing for leadership roles in mental health
            and substance use fields and working to reduce health
            disparities and improve behavioral health-care outcomes for
            racial and ethnic populations. CSWE appreciates increased
            investments in the MFP in fiscal year 2020, particularly
            focused on addiction medicine to address the opioid crisis.
            CSWE urges the committee to include $15.70 million for the MFP
            in fiscal year 2021.
                            department of education
      --$7,000 in fiscal year 2021 for the maximum individual Pell Grant.
            Pell Grants are critical to ensuring access and affordability
            in higher education. CSWE also supports increasing the amount
            of Pell funding that is supported by mandatory spending.
            Student aid programs, particularly grant programs, represent
            important investments and help students avoid crushing debt
            burdens when they graduate.
      --Support for Public Service Loan Forgiveness (PSLF) Programs. PSLF
            is an integral program to ensuring a pipeline of professionals
            in public service serving in high-needs areas. CSWE encourages
            Congress to continue support for this vital program and
            programs like the Temporary Expanded Public Service Loan
            Forgiveness (TEPSLF), which assists public service workers who
            were enrolled in ineligible loan repayment programs. In
            addition to continuing support for PSLF, CSWE asks Congress to
            continue oversight of how the Department of Education is
            implementing the program.
      --$35 million in fiscal year 2021 for The Graduate Assistance in
            Areas of National Need (GAANN) program. The Graduate Assistance
            in Areas of National Need (GAANN) program provides fellowships
            through institutions of higher education to assist graduate
            students with financial need pursue a degree in a field
            designated as an area of national need as determined by the
            Secretary. Since 2012, an academic area related to health
            professions has been designated once. It is estimated that more
            than 18 percent of the U.S. adult population has suffered from
            any mental illness. Mental health is clearly an area of
            national need.
                         national institutes of health
      --$44.7 billion for the National Institutes of Health (NIH). CSWE
            appreciate the continued support from Congress and the
            increased funding for NIH. To build on the advances in
            research, CSWE hopes you will support continued investments in
            biomedical and health-related research that incorporates the
            social and behavioral science research necessary to better
            understand and address the needs of high-risk populations
            including children, minority, and geriatric populations.
        Sincerely.

        [This statement was submitted by Darla Spence Coffey, PhD, MSW,
    President and Chief Executive Officer, Council on Social Work
    Education.]
                                     ______

         Prepared Statement of the Creutzfeldt-Jakob Disease Foundation
        Chairman Blunt, Ranking Member Murray, and Members of the
    Subcommittee:
        On behalf of the Creutzfeldt-Jakob Disease (CJD) Foundation, we
    appreciate the opportunity to submit this testimony in strong support
    for funding of the crucial prion disease work being undertaken by the
    Centers for Disease Control and Prevention in partnership with public
    health agencies around the country and the National Prion Disease
    Pathology Surveillance Center (NPDPSC).
        The CJD Foundation is a patient advocacy organization for those
    affected by Prion Diseases. We work closely with families, physicians,
    researchers, and public health officials to ensure that all possible
    efforts are taken to prevent acquired forms of the disease. Given the
    importance of prion surveillance to public health, we are extremely
    disappointed to see that the President's budget proposal would
    eliminate the $6 million appropriation to the Centers for Disease
    Control and Prevention (CDC) for prion disease. Indeed, the growing
    threat posed by Chronic Wasting Disease (CWD), a widespread prion
    disease of deer and elk, has placed additional strains on the CDC's
    limited prion disease resources and warrants a budgetary increase. As
    such, we are requesting that the budget for prion disease surveillance
    be restored and increased to $7 million to appropriately deal with
    emerging prion disease threats occurring within our borders.
                                    overview
        Creutzfeldt-Jakob Disease (CJD), is a 100 percent fatal,
    degenerative brain disease that causes rapidly progressive dementia,
    memory loss, visual disturbances, motor skill impairments, and
    involuntary movements. Patients most often progress from initial
    symptoms to death in less than a year. CJD, caused by ``prion''
    proteins, is transmissible and presently has no treatment or cure.
    Approximately 1 in 6,000 individuals die from this disease; however,
    the number of unreported and undiagnosed cases remains unclear.
        CJD/Prion Disease surveillance receives modest support through the
    Centers for Disease Control and Prevention (CDC), Center for Emerging
    and Zoonotic Diseases. The Administration's budget has proposed
    eliminating Prion Disease Surveillance in fiscal year 2021. We need
    your support to strengthen and continue the coordination of prion
    disease surveillance and to protect the safety of the American public
    and the nation's food supply.
                variant cjd and bovine spongiform encephalopathy
        One form of Prion Disease in humans, variant CJD (vCJD), is known
    to be caused by ingesting beef contaminated with Bovine Spongiform
    Encephalopathy (BSE), more commonly known as ``mad cow'' disease. The
    most recent U.S. case of variant CJD was announced in 2013 and
    confirmed by the National Prion Disease Pathology Surveillance Center
    (NPDPSC) in 2014.
        Limited BSE testing by the USDA adds another layer to the already
    deepening concerns regarding possible risks to humans. In recent years,
    the USDA has decreased random testing for BSE from 40,000 to 25,000
    tests per year (12,719 tests in 6 months, or 1 test per 3,302 live
    cows). Hence, surveillance of BSE in this country is largely dependent
    on demonstrating the lack of transmission to humans through human
    disease surveillance. The vCJD case identified by NPDPSC in 2014
    exemplifies the persistent risk for vCJD acquired in unsuspected
    geographic locations and highlights the need for continuing prion
    surveillance and awareness to prevent further dissemination of vCJD.
                            chronic wasting disease
        Most recently, emerging laboratory data show that a prion disease
    of deer and elk called Chronic Wasting Disease (CWD) could potentially
    transmit to humans and other mammals, posing a new threat to public
    health. Human surveillance through brain tissue examination is the only
    way to definitely diagnose human prion diseases, determine their
    origin, and determine whether the spread of CWD found in elk and deer
    in 26 states in the U.S. and in 3 Canadian provinces has become a human
    risk. A study in progress has shown that CWD was transmitted to
    macaques (primates that are genetically similar to humans) by feeding
    them contaminated deer meat.
        Unlike the BSE outbreak in cattle, CWD prions are highly infectious
    and are transmitted via direct contact and through contamination of the
    environment, including soil and plants. Additionally, multiple lines of
    experimental evidence indicate that sheep and cows are susceptible to
    CWD. Since CWD has been proven to cross the species barriers, this
    opens up the possibility of oral transmission to humans as well, either
    directly by eating contaminated venison or indirectly through infected
    domestic animals.
        Additional concerns include widespread and long-term prion
    contamination of the environment given that prions can persist for
    decades and the vector of this illness (e.g., deer) are free ranging
    animals that are difficult to impossible to cull. Continued prion
    disease surveillance, particularly through examination of human brain
    tissue, is imperative to evaluate whether CWD has or can spread to
    humans. If transmissible to humans, the possibility of transmission
    between individuals via blood transfusions must also be investigated as
    transmission through blood is known to occur in vCJD. Hence now is NOT
    the time to remove funding for prion disease surveillance, rather it
    should be increased to appropriately deal with these emerging threats.
        The NPDPSC, funded by the CDC and located at Case Western Reserve
    University in Cleveland, Ohio, is our line of defense against the
    possibility of an undetected U.S. human prion disease epidemic as
    experienced in the United Kingdom.
        We ask for Congressional support in increasing the National Prion
    Disease Pathology Surveillance Center's (NPDPSC) appropriation for
    fiscal year 2021 by $1 million, for a total of $7 million. This would
    allow the NPDPSC to meet increasing autopsy costs and continue to
    develop more efficient detection methods while providing an acceptable
    level of human prion disease surveillance. Reduction of funding to the
    NPDPSC would eliminate an important safety net to U.S. public health,
    making the U.S. the only industrialized country lacking prion disease
    surveillance, which in turn would jeopardize the export of U.S. beef.
    The increase in funding would allow the NPDPSC to expand its scope to
    address the growth in Chronic Wasting Disease (CWD) among deer and elk
    and explore whether CWD could spread to humans.
              national prion disease pathology surveillance center
        The NPDPSC is funded entirely by the CDC from funds allocated by
    Congress. The CDC traditionally keeps approximately half of the
    appropriation for CDC and state public health activities, and half goes
    to the NPDPSC; however, this is changing as more states require CDC
    support due to the increasing incidence of CWD in new locations.
        Increasing the 2020 appropriation from $6.0M to $7.0M will allow
    the NPDPSC to persist and continue to develop more efficient detection
    methods while providing an acceptable level of prion surveillance.
    Acceptable national prion surveillance would not be possible at a lower
    level of funding. The requested $1.0M addition to the appropriation
    (total of $7.0M) would enable the NPDPSC to increase surveillance,
    tissue collection, diagnostics and diagnostic test development of prion
    disease cases from CWD endemic states to determine whether CWD is
    transmissible to humans and if so, to what extent this poses a threat
    to public health (e.g., transmission risks from human to human).
        The National Prion Disease Pathology Surveillance Center is the
    only organization in the U.S. that monitors human prion diseases and is
    able to determine whether a patient acquired the disease through the
    consumption of prion contaminated beef (``mad cow'' disease) or meat
    from elk and deer affected by chronic wasting disease (CWD).
        The NPDPSC also monitors all cases in which a prion disease might
    have been acquired by infected blood transfusion, from the use of
    contaminated surgical instruments or from contaminated human growth
    hormone. Because standard hospital sterilization procedures do not
    completely inactivate prions that transmit the disease, these incidents
    put a number of patients under unnecessary risk and required costly
    replacement of contaminated surgical equipment.
        The NPDPSC also plays a decisive role in resolving suspected cases
    or clusters of cases of food-acquired prion disease that are often
    magnified by the media, stirring intense public alarm. To date, the
    NPDPSC has examined over 7,208 suspected cases of prion disease and has
    definitely confirmed the presence and type of prion disease in more
    than 4,399 cases.
        The NPDPSC represents the primary line of defense in safeguarding
    U.S. public health against prion diseases because the U.S.--unlike
    other BSE affected countries such as the United Kingdom, the European
    Union, and Japan--does not have a sufficiently robust animal prion
    surveillance system.
        The NPDPSC's work offers assurances, to countries that import (or
    are considering importing) meat from the U.S., that the U.S is free of
    indigenous human cases of ``mad cow'' disease. In recent years, South
    Korean and Chinese health officials resumed importation of U.S. beef to
    their country after a visit to the NPDPSC provided assurances regarding
    rigorous human prion surveillance.
        Thank you for the opportunity to submit this testimony.

        [This statement was submitted by Deborah R. Yobs, President/
    Executive Director, CJD Foundation.]
                                     ______

                Prepared Statement of the Cure Alzheimer's Fund
        Chairman Blunt, Ranking Member Murray, and members of the Senate
    Labor, Health & Human Services, Education, and Related Agencies
    Appropriations Subcommittee, I am Tim Armour, President and CEO of Cure
    Alzheimer's Fund. I want to thank Congress for past funding for
    Alzheimer's disease research at the National Institutes of Health
    (NIH), and to submit this written testimony to respectfully request at
    least an additional $354 million in fiscal year 2021 above the final
    enacted amount for fiscal year 2020 for Alzheimer's disease research at
    the NIH.
        Additionally, Cure Alzheimer's Fund respectfully requests at least
    $500 million in total appropriations for the Brain Research through
    Advancing Innovative Neurotechnologies (BRAIN) Initiative. The BRAIN
    Initiative is poised to play an important imaging role in the early
    detection and diagnosis of Alzheimer's disease.
        Cure Alzheimer's Fund is a national nonprofit, based in
    Massachusetts, that funds research with the highest probability of
    preventing, slowing or reversing Alzheimer's disease. Since its
    founding 15 years ago, Cure Alzheimer's Fund has invested more than
    $107 million in research through more than 460 grants. Cure Alzheimer's
    Fund has supported research ideas that have become more widely accepted
    such as the role of the innate immune system, a better understanding of
    protein expression and subtle changes in the brain at various stages of
    the disease, and the better understanding of a lymphatic/drainage
    system in the brain.
        A sustained Federal investment, as the one established by this
    Subcommittee in recent years, allows Cure Alzheimer's Fund to support
    initial research that can then be supported by larger grants from the
    NIH. Continued investment in NIH presents opportunities for new ideas
    and researchers to be able to secure funding necessary for continued
    progress in unlocking the secrets of Alzheimer's disease. As we learn
    more about the disease, new researchers, both young investigators and
    established researchers from other disciplines, are entering the field.
    Continued, robust investment in Alzheimer's disease research will allow
    these additional researchers to be able to pursue important new
    understandings of the pathology and development of Alzheimer's disease.
        This Subcommittee has demonstrated its commitment to Alzheimer's
    disease research at NIH through recent sustained increases in the NIH
    budget. And for this commitment, Cure Alzheimer's Fund expresses its
    thanks and appreciation.
        The sustained support from this Subcommittee allows for
    organizations such as Cure Alzheimer's Fund to focus on early-stage
    research knowing that researchers will be able to seek NIH funding at a
    scale larger than Cure Alzheimer's Fund offers for individual projects.
    The ``hand-off'' from Cure Alzheimer's Fund to NIH is an important part
    of the process to getting therapeutic interventions tested, validated,
    and ultimately into the clinic to change the course of the disease for
    the millions of Americans and individuals around the world who are
    afflicted.
        As Dr. Francis Collins, Director of the NIH, mentioned at the House
    LHHSE Subcommittee NIH hearing on March 4, 2020, one of the most
    promising areas of Alzheimer's disease research is the role of the
    innate immune system in the development of Alzheimer's disease. Cure
    Alzheimer's Fund is at the forefront of this research.
        As far back as 2010, Cure Alzheimer's Fund has supported research
    into the beta-amyloid protein and its role in fighting infection. At
    that time, I stated that this type of creative research does not often
    receive Federal funding. However, NIH sees the importance of this
    research and has convened meetings (September 23-24, 2019) around the
    topic of infection and viruses in the development of Alzheimer's
    disease. This would not have happened without early investment in
    research and the availability of larger-scale research funding made
    possible by this Subcommittee.
        https://curealz.org/news-and-events/abeta-may-have-beneficial-
    function-as-part-of-the-innate-immune-system/.
        https://www.nia.nih.gov/about/naca/january-2020-directors-status-
    report.
        Research has shown that the pathology of Alzheimer's disease begins
    long before symptoms appear. Because of this, it is very important to
    be able to determine what happens at each stage in Alzheimer's disease
    development. Research into protein expression and epigenetics is
    providing insight into the subtle changes in the brain that could be
    early markers for the development of Alzheimer's disease. The Cure
    Alzheimer's Fund CIRCUITS program is a multi-laboratory consortium that
    brings together researchers and institutions from various fields for a
    better understanding of the development of Alzheimer's disease and the
    changes it causes in the brain.
        https://curealz.org/news-and-events/circuits-a-consortium-approach-
    to-understanding-the-epigenetics-of-alzheimers/.
        Researchers and scientists are still learning new things about the
    brain. In the past, I have highlighted the work of Jonathan Kipnis and
    the role of the brain lymphatic system, but knowing it is an important
    area of concern for the Subcommittee, I want to mention it again.
        Dr. Kipnis' work showed that the brain lymphatic system acts as a
    type of drain in the brain to be able to remove debris. Continued
    research in this area shows that this brain lymphatic system may also
    be a way to have therapies enter the brain and pass through the blood-
    brain barrier. We are also learning that this brain lymphatic system
    works better when people are asleep, which has implications for the
    research being done on circadian rhythms and their impact on a number
    of health conditions.
        https://curealz.org/news-and-events/a-new-discovery-the-brain-has-
    a-drain-to-remove-debris/.
        https://curealz.org/research/foundational-genetics/berg-brain-
    entry-and-exit-consortium-human-3d-neurovascular-interaction-and-
    meningeal-lymphatics-models-with-application-to-alzheimers-disease/.
        The understanding that Alzheimer's disease pathology begins long
    before symptoms appear, discoveries of brain systems, and a better
    understanding of subtle changes in the brain at the onset of
    Alzheimer's disease pathology benefit not only investment at NIH, but
    also investment in the BRAIN Initiative.
        As we learn more about the brain, we will learn more about
    neurodegenerative conditions including Alzheimer's disease. Better
    imaging tools will allow for researchers to be able to detect changes
    in the brain. An improved ``brain map'' will allow researchers to be
    better able to see changes in the brain and be able to compare brains,
    since every human brain is different. Additionally, better assessment
    tools such as non-radiological tracers and improved cognitive
    assessments will improve early detection and diagnosis of Alzheimer's
    disease.
        https://curealz.org/research/immune-system-structures/neuroimmune-
    molecular-imaging-redefining-the-landscape-of-opportunities-in-
    alzheimers-disease-2/.
        https://directorsblog.nih.gov/2019/10/08/multiplex-rainbow-
    technology-offers-new-view-of-the-brain/.
        Progress is being made in the fight against Alzheimer's disease,
    and this progress is the direct result of partnerships between private
    organizations and NIH. There are many exciting and important
    discoveries happening right now in Alzheimer's disease research.
    Discoveries that will need access to sustained Federal investment to be
    able to move from the laboratory to the marketplace. Now is not the
    time turn away from the important commitment this Subcommittee has
    demonstrated.
        Thank you for your continued support of Alzheimer's disease
    research, and for the opportunity to submit this written testimony and
    to respectfully request at least an additional $354 million above the
    final enacted level in fiscal year 2020 for fiscal year 2021 for
    Alzheimer's disease research at NIH, and at least $500 million in total
    appropriations for the BRAIN Initiative. Cure Alzheimer's Fund has
    worked closely with the Subcommittee in the past and looks forward to
    being your partner as we work toward Alzheimer's disease research
    having the necessary resources to end this awful disease.

        [This statement was submitted by Timothy Armour, President and CEO,
    Cure Alzheimer's Fund.]
                                     ______

             Prepared Statement of the Deadliest Cancers Coalition
        The Deadliest Cancers Coalition is a collaboration of national
    nonprofit organizations focused on addressing issues related to our
    nation's most lethal cancers. We appreciate the opportunity to submit
    this statement in support of strengthening the Federal investment in
    deadliest cancers research conducted and supported by the National
    Institutes of Health (NIH) and the National Cancer Institute (NCI).
        Deadliest cancers are defined by the Recalcitrant Cancer Research
    Act (aka RCRA and Public Law 112-239) as those with a five-year
    relative survival rate below 50 percent. While any cancer with a
    survival rate below 50 percent is considered part of this group, it is
    notable that the definition currently includes seven site-specific
    cancers: brain, esophageal, liver, lung, ovarian, pancreatic, and
    stomach as well as mesothelioma.
        We deeply appreciate Congress' continued strong leadership in
    support of cancer research through the steady increases you have
    provided to the NIH and NCI over the last 5 years. We are also grateful
    for the new dedicated fiscal year 2020 funding Congress provided to
    address a significant decline in the success rate for research project
    grant (RPG) applications at NCI. For fiscal year 2021, the Deadliest
    Cancers Coalition respectfully requests at least $44.7 billion for NIH,
    a $3 billion increase over the fiscal year 2020 level. For NCI, we
    request $6.9 billion, which is the amount proposed by NCI in its fiscal
    year 2021 professional judgment budget and would provide an increase
    for the NCI which is proportional to our overall request for NIH.
        A recent report showed that the $30.82 billion that NIH awarded for
    research grants in fiscal year 2019 supported 475,905 jobs and $81.22
    billion in national economic activity. Medical research funding is
    going to continue to be essential, not just to the patients who are
    counting on the treatments and early detection tools that will be
    developed as a result, but also as part of a plan to reboot the economy
    after the pandemic.
        At the start of this year, the media highlighted reports that the
    U.S. cancer death rate declined by 29 percent from 1991 to 2017,
    including a 2.2 percent drop from 2016 to 2017, the largest single-year
    drop in cancer mortality ever reported. While this achievement is
    worthy of celebration, and is directly attributable to NIH and NCI
    supported research, it masks the fact that we still have few if any
    screening or early detection tools or treatments for those who have
    been diagnosed with one of the deadliest cancers.
        In fact, the deadliest cancers offer a powerful example of the need
    for continuing the path of sustained and robust increases for the NIH
    and NCI. While the overall five-year relative survival rate for all
    cancers combined has risen from 50 percent when the War on Cancer was
    first declared in 1971 to 67 percent today, we have seen relatively
    little success in improving survival for the deadliest cancers.
    Multiple myeloma is one of the few ``success'' stories among this group
    as the five-year survival rate was 34 percent when the coalition was
    founded in 2008 and is now 54 percent. As the table below demonstrates,
    the prognosis for those with one of the deadliest cancers is far below
    the current average.

       FIVE YEAR SURVIVAL RATES FOR THE DEADLIEST CANCERS COMPARED PTO THE
                          OVERALL CANCER SURVIVAL RATE
                                   (2008-2020)
    ------------------------------------------------------------------------
                                          Est. 2020 5-Year  Est. 2008 5-Year
                                           Survival Rates     Survival Rate
    ------------------------------------------------------------------------
    Brain...............................               34%               35%
    Esophageal..........................               20%               16%
    Liver...............................               18%               11%
    Lung................................               19%               15%
    Myeloma *...........................               54%               34%
    Ovarian.............................               48%               45%
    Pancreas............................               10%                5%
    Stomach.............................               32%               24%
    ALL CANCERS.........................               67%               66%
    ------------------------------------------------------------------------
    * Myeloma ``graduated'' out of the deadliest cancers in 2016 when its
      survival rate reached 50 percent.

        Congress passed the RCRA to encourage the NCI to identify specific
    areas of research that could speed progress in the deadliest cancers as
    well as opportunities for the public and private sectors to work
    together to achieve these goals. Specifically, it required that the NCI
    develop a long-term strategic plan for addressing recalcitrant cancers
    beginning with pancreatic adenocarcinoma and small-cell lung cancer.
    The statute requires that the NCI provide regular updates on the
    implementation of these ``scientific frameworks'' through the annual
    Congressional Justifications and requires a report to Congress due
    later this year that evaluates the effectiveness of the frameworks that
    were created.
        The NCI has made progress in implementing the statute, particularly
    with respect to pancreatic adenocarcinoma and small-cell lung cancer,
    and has also begun a scientific-framework-like process for
    glioblastomas. In late 2018, NCI signaled its intention to also begin
    discussions on other cancers, however, it is unclear whether those
    discussions are leading to the NCI-led meetings with the broader
    scientific community necessary for progress. There is still much that
    needs to be done for all of these cancers. It is therefore vital that
    Congress continue to shine a light on all recalcitrant cancers so that
    they do not slip back into the shadows.
        The Deadliest Cancers Coalition deeply appreciates the inclusion of
    report language focusing on these cancers in years past, including the
    fiscal year 2020 language that directed NCI to develop a scientific
    framework using the process outlined in the RCRA for stomach and
    esophageal cancers. The fiscal year 2020 language also urged the
    Institute to continue to support research with an emphasis on
    developing screening and early detection tools and more effective
    treatments for all recalcitrant cancers. The NCI's response in the
    fiscal year 2021 Significant Items shows that while they are certainly
    supporting a range of research projects that support advancements in
    some of the deadliest cancers, there is no information on how they are
    addressing Congress' instructions to begin a scientific framework
    process for stomach and esophageal cancers.
        We are therefore requesting that the Subcommittee include language
    in the fiscal year 2021 LHHS Appropriations bill that holds NCI
    accountable to the fiscal year 2020 language and to the goals and
    ideals of the RCRA. Specifically, in addition to ensuring that NCI
    moves forward with plans for stomach and esophageal cancers, it is
    critical that NCI also specifies how it will continue the goals of the
    RCRA to develop and implement strategic plans for the full range of
    recalcitrant cancers.
        The 2012 legislation was first introduced by Senator Whitehouse and
    Representatives Anna Eshoo and Leonard Lance because it was clear that
    just following ``standard procedure'' with respect to the recalcitrant
    cancers was not working and that there needed to be a specific focus on
    determining research priorities for these diseases. That need has not
    diminished. The Deadliest Cancers Coalition has submitted report
    language to Subcommittee that we believe will meet these goals and
    assist our members in their conversations and collaboration with NCI on
    working together to improve survival.
        The Deadliest Cancers Coalition was founded because we believe that
    every patient diagnosed with cancer should have at least a 50 percent
    chance at survival. Unfortunately, in 2020, nearly half of all cancer-
    related deaths will be due to one of the deadliest cancers--a statistic
    that is largely unchanged since we were founded. We clearly still have
    a long road ahead of us to see more cancers ``graduate'' out of being
    considered a recalcitrant cancer. We therefore urge the Subcommittee to
    continue its leadership to ensure that NIH receives $44.7 billion for
    fiscal year 2021 and $6.9 billion for the NCI and that you continue to
    hold the Institute accountable to making progress on the deadliest
    cancers through report language in the fiscal year 2021 bill.

        [This statement was submitted by Megan Gordon Don, Executive
    Director,
    Deadliest Cancers Coalition.]
                                     ______

             Prepared Statement of the Disability Advocacy Alliance
        Disability Advocacy Alliance (DAA) is a 501(c)(3) organization that
    works to protect the rights of individuals with intellectual and
    developmental disabilities (I/DD) in Ohio. We support a full continuum
    of residential and employment options, including Intermediate Care
    Facilities for Individuals with Intellectual Disability (ICFs) and Home
    and Community Based Services (HCBS). We disagree with the notion that
    community is defined by the arbitrary label of a Medicaid funding
    source. Rather, DAA families know that community is defined by the
    loving homes and relationships our family members build with their
    family, friends, and caregivers. DAA writes in support of legislative
    and report language submitted by VOR that:
      --Prohibits the use of appropriations for a Protection & Advocacy
            (P&A) System to bring a lawsuit against an ICF/IID, unless the
            affected individuals and their legal guardians have been
            provided reasonable notice of the lawsuit.
      --Prohibit states from using MFP funds or its resulting Federal
            Assistance Matching Percentage (FMAP) to override beneficiary
            choice and be used by a state to finance and abet the closure
            of an ICF/IID and the transfer of its residents, or to
            financially incentivize private providers to close or reduce
            the number of beds in their ICF/IID facilities.
         federal law supports residential choice for i/dd beneficiaries
        The foundational U.S. Supreme Court Olmstead decision makes
    individual need and choice paramount:

        ``But we recognize, as well, the States' need to maintain a range
            of facilities for the care and treatment of persons with
            diverse mental disabilities, and the States' obligation to
            administer services with an even hand.'' (Olmstead v. L.C. 527
            U.S. 581, 597)

        ``We emphasize that nothing in the ADA or its implementing
            regulations condones termination of institutional settings for
            persons unable to handle and benefit from community
            settings...nor is there any Federal requirement that community-
            based treatment be imposed on patients who do not desire it.
            (Olmstead, 601-602)

        ``Each disabled person is entitled to treatment in the most
            integrated setting possible for that person recognizing that,
            on a case-by-case basis, that setting may be in an
            institution.'' (Olmstead, 605)
        Medicaid law gives beneficiaries the right to choose between an
    institutional or community setting. 42 C.F.R. Sec. 441.302(d)(2); see
    also, 42 U.S.C.Sec. 1396n(c)(2)(C)
        The Developmental Disabilities Assistance and Bill of Rights Act of
    2000 (DD Act) recognizes that individuals with I/DD and their families
    are the primary decisionmakers regarding services.

        ``Individuals with developmental disabilities and their families
            are the primary decisionmakers regarding the services and
            supports such individuals and their families receive, including
            regarding choosing where the individuals live from available
            options, and play decisionmaking roles in policies and programs
            that affect the lives of such individuals and their families.''
            DD Act, 42 U.S.C. Sec. 15001(c)(3)(2000).
                         protection & advocacy systems
        The DD Act requires that states receiving Federal financial
    assistance under the Act have in place a Protection & Advocacy (P&A)
    System to protect and advocate the rights of individuals with (I/DD).
    42 USC Sec. 10543. P&As are funded by the U.S. Department of HHS
    through its agency, the Administration on Community Living (ACL). P&As
    protect the rights of individuals who access community services, but
    they attack the rights of individuals with severe I/DD who need and
    choose intensive care in intermediate care facilities for individuals
    with intellectual disability (ICFs/IID). P&As advocate for ICF/IID
    closures regardless of the interests of the Medicaid beneficiaries they
    are charged to protect. A favorite tool of P&As is the class action
    lawsuit. States are often wary of becoming involved in costly
    litigation, and so many will settle a class action before providing a
    proper defense. Often, simply the threat of litigation is enough to
    cause states to implement policies to limit ICFs/IID and restrict
    access to them.
        Ohio families have spent 4 years fighting a P&A class action, Ball
    v. Kasich (2:16-cv-282) (2016) that was brought by Disability Rights
    Ohio (DRO) against Ohio's ICF/IID program. DRO threatened litigation in
    Fall 2014. Just the threat of litigation caused the State to close two
    state ICFs/IID and institute policies to force downsizings and closures
    of private ICFs/IID. Families objected strongly, filing over 21,000
    hardcopy petition signatures with the state legislature. Despite this
    express support for the ICF/IID program, the P&A still filed suit
    against the State even though its goals and priorities are to take into
    consideration the comments of its constituents. 42 USC
    Sec. 15043(a)(2)(D)(i) & (ii). Widespread ICF/IID closures were only
    prevented by the intervention of a group of ICF/IID families into the
    lawsuit. The judge recognized the importance of families' efforts when
    he allowed their intervention. In his Order of July 25, 2017, the judge
    stated that the rights of individuals who want to remain in their ICF/
    IID homes or who may need an ICF/IID in the future were not protected
    until the families filed their Motion to Intervene.
        A P&A action in Illinois, Ligas v. Maram (1:05-cv-04331) (2005),
    was opposed just as vociferously by ICF/IID families when an
    overwhelming number of families objected to the class settlement,
    causing the judge to overturn the settlement, order the intervention of
    ICF/IID families, and allow families to be part of negotiations for a
    new settlement. As with Ball in Ohio, families' intervention in Ligas
    was crucial to protecting the rights of ICF/IID residents.
        In a third P&A case from Utah, Christensen v. Miner (2:18-cv-00037)
    (2018), the state of Utah did not even offer a defense to the class
    action. The State began settling the class action almost immediately
    upon its filing. By the time ICF/IID families were aware of the lawsuit
    and understood its affects, it was too late to mount a defense.
    Families sent hundreds of letters to the Court objecting to the
    settlement, but the settlement was approved with the requirement that
    Utah's ICF/IID bed census would be reduced by 30 percent, to 465 total
    beds from 650.
        These examples show the importance of VOR's language request so
    that families are notified of litigation from the start so that they
    can act to protect the rights of their disabled loved ones.
                            money follows the person
        MFP (Money Follows the Person) is a program of the U.S. Department
    of HHS' Centers for Medicaid & Medicaid Services (CMS). It was enacted
    to rebalance states' Medicaid service systems toward community
    settings, but for I/DD systems, this goal was realized long ago. Today,
    MFP has become a favorite tool of P&As and other anti-ICF/IID groups
    like the ARC to close institutional settings. In December 2019, the CEO
    of the ARC stated, ``We applaud elected officials who understand the
    value of MFP, core to our mission to advance community living and close
    all institutions.'' \1\ Such activity, however, goes against a
    statutory goal of the MFP program, ``to enable Medicaid-eligible
    individuals to receive support for appropriate and necessary long-term
    services in the settings of their choice.'' \2\ (Emphasis added.) The
    following examples exhibit how MFP is used to override beneficiary
    choice:
    ---------------------------------------------------------------------------
        \1\ https://thearc.org/huge-victory-for-community-living-for-
    people-with-disabilities-agreement-in-congress-to-commit-to-money-
    follows-the-person-program/.
        \2\ Public Law 109-171 Sec. 6071(a)(2).
    ---------------------------------------------------------------------------
        Ohio used MFP to help fund transitions of residents from two state
    run ICFs/IID. The State moved to close the facilities in response to
    threats of litigation from the P&A. MFP and the enhanced FMAP were also
    used by the State to give financial incentives to private providers \3\
    to close and reduce their ICF/IID facilities.
    ---------------------------------------------------------------------------
        \3\ https://www.ohca.org/uploads/news/The_Future_of_the_ICF-
    IID_Program_White_
    Paper.pdf, page 4-5.
    ---------------------------------------------------------------------------
        New York announced that it would undertake sweeping ICF/IID
    closures of both state run and private ICFs/IID reducing system
    capacity by over 6,000 ICF/IID beds. Only 150 state run ICFs beds and
    456 private ICFs beds will be open after completion of the New York's
    MFP plan.\4\ With such mass closings, beneficiary choice can not be
    protected.
    ---------------------------------------------------------------------------
        \4\ Links on NY Office for People with Developmental Disabilities
    website no longer available, but documentation available upon request.
    ---------------------------------------------------------------------------
        Texas used MFP funds to incentivize private ICF/IID providers to
    engage in what they termed ``voluntary closures'' of their ICF/IID
    facilities. The state of Texas provided this mock example in ``The
    Texas Money Follows the Person Demonstration Operational Protocol,''

        ``Management of ABC Place invited all residents and their family
            members/LARs to a meeting on November 14, 2007 to discuss the
            possibility of closing ABC Place and what the impact would be
            for the residents. (See footnote 5.)

        ``Ms. Johnson indicated at that time that she was most comfortable
            with Jim residing in a large community ICF/IID and was very
            angry about the closure.'' \5\
    ---------------------------------------------------------------------------
        \5\ https://hhs.texas.gov/sites/default/files/documents/laws-
    regulations/reports-presentations/2018/mfp-operational-protocol-
    amendment-5.pdf, page 41 & page 42.
    ---------------------------------------------------------------------------
        The fact that the state of Texas proposed this particular mock
    example in preparing for its MFP implementation shows that Texas likely
    anticipated angry reactions of ICF guardians to the news of facility
    closures.
        Wisconsin used MFP to implement its ``ICF restructuring
    Initiative.'' 28 ICFs were closed with 936 individuals losing their ICF
    homes. Only 135 ICF/IID residents remained.\6\ Again, with such mass
    closings, beneficiary choice cannot be respected.
    ---------------------------------------------------------------------------
        \6\ https://www.dhs.wisconsin.gov/publications/p01054-16.pdf, page
    3 of attachment to cover letter.
    ---------------------------------------------------------------------------
        VOR's language request will ensure that MFP is used as it was
    intended, to aid transitions initiated at the choice of beneficiaries.
                                   conclusion
        If beneficiary choice is followed, Medicaid participants with I/DD
    will lead happier and safer lives, as individuals and their families
    will always be the most motivated to protect health and welfare. While
    the advent of community services has helped a large portion of the I/DD
    community, there will always be a portion of the I/DD community with
    severe and profound needs that require intensive supports (i.e.
    nursing, therapy, psychological services, medical oversight). For
    individuals with complex needs, these services are most practically,
    economically, and safely provided in large congregate settings like
    ICFs/IID where sharing of resources across patients can take place.
    Families understand all of this instinctively as they know better than
    anyone what is involved in the care of their loved ones, physically,
    emotionally, and socially. Expanding community services should never
    come at the expense of the health and safety of America's most fragile
    citizens. Ensuring that appropriations for P&A and MFP programs are
    used in ways that honor statutory requirements to respect beneficiary
    choice will protect lives.
                                     ______

      Prepared Statement of the Disability Rights Education & Defense Fund
        Dear Chairman Blunt, Ranking Member Murray and Committee Members,
        The Disability Rights Education & Defense Fund (DREDF) appreciates
    the opportunity to submit this testimony regarding necessary funding
    for the Parent Training and Information Centers (PTIs) and Community
    Parent Resource Centers (CPRCs) under the Individuals with Disabilities
    Education Act. Thank you for the leadership you have provided in
    beginning to address the needs of students and families during the
    COVID-19 pandemic. It is more important than ever for this Committee to
    continue its role of providing leadership to address the needs of
    students with disabilities and their families.
        As you develop the fiscal year 2021 Labor, Health and Human
    Services, Education, and Related Agencies Appropriations bill, we
    request that you provide $30 million to the Parent Information Centers
    program at the U.S. Department of Education. This request is a slight
    increase over fiscal year 2020 to support improved services to parents,
    and is in line with cost of living increases.
        We also urge you to provide an emergency, one-time investment of
    $27.411 million for the PTI program to support children with
    disabilities and their families as they navigate ensuring access to
    education during this difficult time. We would further urge that this
    funding be provided proportionally to each current grantee and that
    funds be permitted to be expended through the end of September 2021.
    Additional support is needed as the temporary closure of school
    buildings, and requirements for social distancing as schools reopen can
    be traumatic and disruptive to receiving crucial services for children
    with disabilities and their families.
        DREDF was founded in 1979 as a unique alliance of adults with
    disabilities and parents of children with disabilities. DREDF advances
    the civil and human rights of people with disabilities through legal
    advocacy, training, education, and public policy and legislative
    development. One-third of our work aims to protect and advance the
    rights of students with disabilities, and promoting their integration
    into mainstream society.
        DREDF operates one of nearly 100 PTIs and CPRCs funded under the
    PTI program nationwide. DREDF's successful PTI has served three Bay
    Area counties for 32 years, supporting the role of parents in the
    education of children with disabilities and working with foster
    families and county agencies and local and state organizations focused
    on child welfare. DREDF's Education Advocates (who are also parents of
    children with disabilities) are in daily contact with California
    families in the disproportionately low-income and of--color communities
    in Alameda and Contra Costa counties. They work closely with DREDF's
    senior and litigation staffs, providing a marginalized community with
    much-needed access to skilled advocates and attorneys. PTI services are
    needed now more than ever. A parent recently commented on DREDFs
    services, ``I can't imagine what the quality of our lives would be like
    without the knowledge I gained from participating in DREDF's workshops
    for parents and the community.''
        The current COVID-19 crisis as well as resulting school closures
    and transition to digital or other curriculum-based learning has
    presented a challenge for all students. These challenges have been
    compounded for children with disabilities who may rely on hands-on
    assistance from teachers or aides which can be difficult to replicate
    outside of classrooms, particularly amidst social distancing and stay
    at home order requirements. These disruptions to students' classroom-
    based learning experiences as well as the very real stress children and
    families are experiencing during the pandemic itself can be
    particularly traumatic for some children. PTIs need additional
    resources to help parents navigate the closure and eventual reopening
    of school buildings, compensatory services to make up for lost
    instructional time, and social distancing policies that will likely
    impact supports and services and equal access to education for their
    children.
        Thank you again for the opportunity to submit comments to the
    Senate Committee on Appropriations Subcommittee on Labor, Health and
    Human Services, and Education and Related Agencies for this important
    topic. We would be happy to address any questions or concerns about the
    above.
        Respectfully.

        [This statement was submitted by Susan Henderson, Executive
    Director,
    Disability Rights Education & Defense Fund.]
                                     ______

                       Prepared Statement of Duke Health
        Duke Health (the conceptual integration of the Duke University
    Health System, the schools of Medicine and Nursing, the Private
    Diagnostic Clinic as the independent, multi-specialty physician
    practice, and other health and health research centers across Duke
    University) would like to express appreciation for Federal support
    provided to academic health centers across the United States,
    especially in this unprecedented time of the COVID-19 public health
    emergency. COVID-19 has illustrated how vital the investments from this
    Subcommittee are for securing a healthcare infrastructure in the United
    States that can research and develop new vaccines and therapeutics, and
    provide high-quality care to patients at all times.
        Duke Health is committed to conducting innovative basic and
    clinical research, rapidly translating breakthrough discoveries to
    patient care and population health, providing a unique educational
    experience to future clinical and scientific leaders, improving the
    health of populations, and actively seeking policy and intervention-
    based solutions to complex global health challenges. Underlying these
    ambitions is a belief that Duke Health is a destination for outstanding
    people and a dedication to continually explore new ways to help people
    grow, collaborate, and succeed.
        Reflecting Duke Health's mission of ``Advancing Health Together,''
    this written testimony outlines Duke Health's biomedical research and
    healthcare priorities that represent sound investments in vital
    programs at HHS that make a difference in the lives of patients across
    the United States. Thank you for this opportunity to submit written
    testimony.
                      national institutes of health (nih)
        Duke Health is grateful for Congress' robust investments in NIH,
    which has kept the United States on the cutting edge of new biomedical
    advances. For fiscal year 2021, Duke Health respectfully requests at
    least $44.7 billion for the NIH. This funding would allow for
    meaningful growth above inflation in the base budget and aid efforts to
    expand NIH's capacity to support promising science in all disciplines
    in addition to special initiatives. Labs across the country that were
    conducting groundbreaking biomedical research have paused due to COVID-
    19, losing ground on every other disease. As these labs restart,
    additional resources from NIH will be vital to support the biomedical
    infrastructure in the United States and to continue biomedical
    advances. Thoughtful consideration must be given to how this
    subcommittee can help meet the biomedical research needs for labs and
    workforce as a result of COVID-19.
        At Duke, NIH funding plays a critical role in the advancement of
    research and clinical care. NIH has supported vital research at the
    Duke Clinical Research Institute, the world's largest academic research
    organization working to improve patient care through innovative
    clinical research; the Duke Human Vaccine Institute, a national and
    international leader in the fight against major infectious diseases;
    and the Duke Cancer Institute, a top comprehensive cancer center in
    peer-reviewed research support.
        Duke Health asks the Subcommittee to not include language that
    would limit the use of nonhuman primates in research that could cripple
    the search for treatments and cures for many human diseases, especially
    therapeutics and vaccines for COVID-19.
                centers for disease control and prevention (cdc)
        The CDC serves as the command center for the nation's public health
    defense system against emerging and reemerging infectious diseases.
    Now, more than ever, investments in the nation's public health
    infrastructure are vital. Duke Health urges the Subcommittee to provide
    $8.3 billion for the CDC in fiscal year 2021. From aiding in the
    surveillance, detection and prevention of the Zika virus to playing a
    lead role in the control of Ebola in West Africa and the current COVID-
    19 public health emergency, CDC is the world's expert resource and
    response center, coordinating communications, and serving as the
    laboratory reference center.
        Among its many programs, the Prevention Epicenters Program is a
    unique research program in which CDC's Division of Healthcare Quality
    Promotion collaborates with academic investigators to conduct
    innovative infection control and prevention research. The Duke-UNC
    Epicenter has considerable experience and research expertise in
    hospital epidemiology, infection control, antimicrobial stewardship,
    epidemiologic studies of multidrug-resistant organisms, disinfection,
    and sterilization. In addition, the Duke Infection Control Outreach
    Network (DICON) and Duke Antimicrobial Stewardship Outreach Network
    (DASON) engage over 60 community hospitals in the United States.
        Duke Health is grateful for the $2 million increase in fiscal year
    2020 for the CDC's Agency for Toxic Substances and Disease Registry.
    Although this program does not fall under the jurisdiction of this
    Subcommittee, Duke Health continues to support a robust investment in
    its activities at the CDC, which are closely linked with the vital
    activities at the Superfund Research Center at Duke University. This
    Center receives its funding from the National Institute of
    Environmental Health Sciences Superfund Research Program at NIH.
              health resources and services administration (hrsa)
        Duke Health appreciates the Subcommittee's continued investment in
    Title VII health professions and training programs and Title VIII
    Nursing Workforce Development programs at HRSA. These programs ensure a
    well-trained pipeline of health professionals to meet the increasing
    health needs facing the United States. For fiscal year 2021, Duke
    Health respectfully requests that the Subcommittee provide $512 million
    for Title VII and VIII programs overall, including $278 million to be
    allocated for Title VIII Nursing Development Workforce Programs. Title
    VII and Title VIII are the only Federal programs that support
    education/training opportunities for an array of aspiring and
    practicing health professionals, both facilitating career opportunities
    and bringing healthcare services to rural and underserved communities.
        Duke Health urges the Subcommittee to provide $23 million in fiscal
    year 2021 for the National Cord Blood Inventory (NCBI) at HRSA. This
    program is charged with building a genetically and ethnically diverse
    inventory of at least 150,000 new units of high-quality umbilical cord
    blood for transplantation. These cord blood units (CBUs), as well as
    other units in the inventories of participating cord blood banks, are
    made available to physicians and patients for blood stem cell
    transplants through the C.W. Bill Young Cell Transplantation Program.
    Cord blood banks participating in the NCBI Program, including the
    Carolinas Cord Blood Bank in the Duke University School of Medicine,
    also make cord blood units available for preclinical and clinical
    research focusing on cord blood stem cell biology and the use of cord
    blood stem cells for human transplantation and cellular therapies.
        Blood stem cell transplantation is potentially a curative therapy
    for many individuals with leukemia and other life-threatening blood and
    genetic disorders. Each year, nearly 18,000 people in the U.S. are
    diagnosed with illnesses for which blood stem cell transplantation from
    a matched donor is their best treatment option. Often, the first-choice
    donor is a sibling, but only 30 percent of people have a fully tissue-
    matched brother or sister. For the other 70 percent, a search for a
    matched unrelated adult donor or a matched umbilical cord blood unit
    must be performed. The success of cord blood stem cell therapies in
    treating diseases and alleviating suffering makes an urgent and
    compelling case for funding this program.
        Duke Health respectfully requests the Subcommittee provide $30
    million for the C.W. Bill Young Cell Transplantation Program through
    the National Cord Blood Inventory (NCBI) at HRSA in fiscal year 2021.
    The Carolinas Cord Blood Bank (CCCB) at Duke is a member bank of the
    National Cord Blood Inventory of the C.W. Bill Young Cell
    Transplantation Program. The goal of this program is to increase the
    number of transplants for recipients suitably matched to biologically
    unrelated donors of bone marrow and umbilical cord blood. The CCBB is
    one of the largest cord blood banks in the world. Cord blood units that
    are banked at CCBB are listed on the National Marrow Donor Program
    (NMDP) Be the Match(r) Registry, an accumulated listing of donated cord
    blood units from participating banks that are available to provide
    donors for patients needing a hematopoietic stem cell transplant to
    treat cancer or certain genetic diseases.
        Thousands of mothers have donated their cord blood to the CCBB.
    Banked units are comprised of African-American, Hispanic-American,
    Asian-American, and Caucasian samples. This diversity helps patients of
    all racial and ethnic backgrounds find suitable matches for
    transplantation. The CCBB has distributed cord blood units for
    transplantation to several thousand patients since 1999. Cord blood
    recipients of CCBB units include children and adult patients facing
    life-threatening illnesses who need a ``stem cell'' transplant from an
    unrelated donor to provide them with healthy blood cells. Many of these
    patients have been affected by leukemia, lymphoma, severe aplastic
    anemia, or other fatal diseases of the blood or immune system, or
    certain inherited metabolic diseases. In addition to life-saving
    transplants, the CCBB also provides cord blood units for research.
    These units are made available to investigators for critical research
    in the area of cord blood and stem cell biology. The impact of funding
    has far reaching impacts, and Duke Health urges the Subcommittee to
    support this request.
               agency for healthcare research and quality (ahrq)
        Duke Health urges the Subcommittee to provide $471 million for the
    Agency for Healthcare Research and Quality in fiscal year 2021. This
    funding level is consistent with the fiscal year 2010 level adjusted
    for inflation and would allow AHRQ to rebuild portfolios terminated as
    a result of years of past cuts and expand its research and training
    portfolio to address our nation's pressing and evolving healthcare
    challenges. As the agency that provides funding for health systems
    research, AHRQ is vital to improving health, safety and health outcomes
    for patients. AHRQ is forward thinking, addressing issues such as data
    analytics, and is providing important resources for healthcare
    professionals during COVID-19.
        Patients with sickle cell disease (SCD), an inherited red blood
    cell disorder, often have intense pain that brings them to hospital
    emergency departments (EDs) for immediate treatment. Their care can be
    fragmented, with frequent hospitalizations and specialist care,
    infrequent follow-up with primary care doctors, and repeat ED visits.
    Funding from AHRQ supports activities at the Duke University School of
    Nursing to improve the care of these patients in the ED department,
    particularly through the development and use of evidence-based decision
    support tools. In addition, AHRQ funding supports the Duke Center for
    Healthcare Safety and Quality, which works to develop and support
    quality and safety related roles and committees, training, tools,
    research, strategies, data and other resources through an
    interdisciplinary team.
       substance abuse and mental health services administration (samhsa)
        Duke Health appreciates investments in the National Child Traumatic
    Stress Network (NCTSN) grant program at SAMHSA, especially efforts to
    provide additional funding for this program during COVID-19. For fiscal
    year 2021 Duke Health urges the Subcommittee to provide $73.9 million
    for NCTSN.
        NCTSN, which is coordinated by the UCLA-Duke University National
    Center for Child Traumatic Stress, increases access to services for
    children and families who experience or witness traumatic events. This
    unique network of frontline providers, family members, researchers, and
    national partners is committed to changing the course of children's
    lives by improving their care and moving scientific gains quickly into
    practice across the U.S. In recent years, estimates from the NCTSN
    Collaborative Change Project (CoCap) have indicated that each quarter
    about 35,000 individuals--children, adolescents and their families--
    directly benefited from services through this Network. Since its
    inception, the NCTSN has trained more than one million professionals in
    trauma-informed interventions. Hundreds of thousands more are
    benefiting from the other community services, website resources,
    educational products, community programs, and more. Over 10,000 local
    and state partnerships have been established by NCTSN members in their
    work to integrate trauma-informed services into all child-serving
    systems, including child protective services, health and mental health
    programs, child welfare, education, residential care, juvenile justice,
    courts, and programs serving military and veteran families.
     office of the assistant secretary for preparedness and response (aspr)
        Duke Health requests that the Subcommittee provide $11.5 million,
    full authorized funding, for the Military and Civilian Partnership for
    the Trauma Readiness Grant Program for fiscal year 2021 within ASPR.
    Originally known as MISSION ZERO, this critical program would provide
    funding to ensure trauma care readiness by integrating military trauma
    care providers into civilian trauma centers. These partnerships allow
    military trauma care providers to gain exposure to treating critically
    injured patients in communities and keep their skills sharp to increase
    readiness for deployment. Additionally, they allow civilian trauma care
    providers to gain insight into best practices from the battlefield that
    can be integrated into civilian care. Fully funding this program will
    help to improve the nation's response to public health and medical
    emergencies.
                                     ______

         Prepared Statement of the Dystonia Medical Research Foundation
                summary of recommendations for fiscal year 2020
    _______________________________________________________________________

      --Provide $44.7 billion for the National Institutes of Health (NIH)
            and proportional increases across its Institutes and Centers
      --Continue dystonia research supported by NIH through the National
            Institute on Neurological Disorders and Stroke (NINDS), the
            National Institute on Deafness and other Communication
            Disorders (NIDCD), and the National Eye Institute (NEI).
    _______________________________________________________________________

        Dystonia is a neurological movement disorder that causes muscles to
    contract and spasm involuntarily. It affects men, women and children.
    Dystonia can be generalized, affecting all major muscle groups, and
    resulting in twisting, repetitive movements and abnormal postures or
    focal, affecting a specific part of the body such as legs, arms, hands,
    neck, face, mouth, eyelids and vocal cords. Currently, it is estimated
    that at least 300,000 individuals in North America suffer from
    dystonia, making it more common than Huntington's, muscular dystrophy,
    and ALS. There is no known cure for dystonia.
             dystonia research at the national institutes of health
        The Dystonia Medical Research Foundation urges the Subcommittee to
    continue its support for natural history studies on dystonia that will
    advance the pace of clinical and translational research to find better
    treatments and a cure. In addition, we encourage Congress to continue
    supporting NINDS, NIDCD, and NEI in conducting and expanding critical
    research on dystonia.
        Currently, dystonia research at NIH is supported by the National
    Institute of Neurological Disorders and Stroke (NINDS), the National
    Institute on Deafness and Other Communication Disorders (NIDCD), and
    the National Eye Institute (NEI).
        The majority of dystonia research at NIH is supported by NINDS.
    NINDS has utilized a number of funding mechanisms in recent years to
    study the causes and mechanisms of dystonia. These grants cover a wide
    range of research including the genetics and genomics of dystonia, the
    development of animal models of primary and secondary dystonia,
    molecular and cellular studies in inherited forms of dystonia,
    epidemiology studies, and brain imaging. Earlier this year, NINDS
    released a summary of our 2018 meeting that focused on defining
    emerging opportunities in dystonia research.
        Key findings include (1) noting that the heterogeneity of dystonia
    poses challenges to research and therapy development. (2) There is more
    to be learned from genetic subtypes, along clinical, etiology, and
    pathophysiology axes. (3) In order to facilitate key advancements in
    research technology, there needs to be more collaboration. (4) New
    research priorities should include the generation and integration of
    high-quality phenotypic and genotypic data. (5) reproducing key
    features in cellular and animal models, both of basic cellular
    mechanisms and phenotypes, leveraging new research technologies. (6)
    Collaboration is necessary both for collection of large data sets and
    integration of different research methods.
        It is of great significance that a number of dystonia patient
    advocacy group, led by the Dystonia Medical Research Foundation,
    actively took part in the meeting and are working to ensure that
    Congress continues to support robust NIH funding.
        NIDCD and NEI also support research on dystonia. NIDCD has funded
    many studies on brainstem systems and their role in spasmodic
    dysphonia, or laryngeal dystonia. Spasmodic dysphonia is a form of
    focal dystonia which involves involuntary spasms of the vocal cords
    causing interruptions of speech and affecting voice quality. NEI
    focuses some of its resources on the study of blepharospasm.
    Blepharospasm is an abnormal, involuntary blinking of the eyelids which
    can render a patient legally blind due to a patient's inability to open
    their eyelids. We were pleased to see that Congress has encouraged both
    NIDCD and NEI to expand their research into both spasmodic dysphonia
    and blepharospasm.
        We thank the committee for the increase for NIH in fiscal year
    2020. We know firsthand that this will further NIH's ability to fund
    meaningful research that benefits our patients.
                              patient perspectives
        My dystonia first presented when I was about 8 years old and my
    parents took me to many, many doctors. My foot and leg would turn in
    when I tried to walk--making walking very difficult. The kids at school
    would tease me and called me names like ``mental foot''. When I
    couldn't explain it, they teased me more. Finally, at the age of 12 the
    diagnosis of dystonia was made. I have the genetic form of dystonia--
    DYT1 dystonia that is generalized and commonly affects children between
    the ages of 8 to 15. For me, dystonia spread from my left foot to both
    legs, my arms and my back. When I walked, my back would arch and put a
    lot of pressure on the bottom of my spine which was pretty painful. My
    legs were very tight. My right foot started to turn in and that put
    pressure on my ankle when I walked. My right arm was very tight, so
    when I had to write it was painful. I decided to pursue Deep Brain
    Stimulation for my dystonia when it became too painful to walk with my
    son to the park that was around the corner from our house. The results
    have been life-changing. My wife and sons now have a husband and father
    who, despite having dystonia, is physically able to be active and a
    part of their lives. It isn't a cure but a treatment that really worked
    for me.
                                 blepharospasm
        I drive through Atlanta's brutal traffic when suddenly, my eyes
    clamp shut. I pry my left eye open with thumb and forefinger, steer
    with my right hand. My eyes open for a few seconds, then close with no
    warning. What is happening? Over the next few months, these spasms
    progress from eyes to lower face, neck and shoulders. A year later I am
    diagnosed with Dystonia, a debilitating, little-known disease. A
    healthy 49-year-old mother of three, I now fight constant pain; can no
    longer work, drive or perform basic activities. Even walking our dog is
    a dangerous fall risk.
                              spasmodic dysphonia
        Spasmodic dysphonia (SD), a focal form of dystonia, is a
    neurological voice disorder that involves ``spasms'' of the vocal cords
    causing interruptions of speech and affecting voice quality. My voice
    sounds strained or strangled with breaks where no sound is produced.
    When untreated, it is difficult for others to understand me. I receive
    injections of botulinum toxin into my vocal cords every 3 months for
    temporary relief of symptoms. This has worked well for me for over a
    decade. At the start of this year, my insurance coverage changed when
    my husband's company changed providers. As a result, I had to undergo
    an extensive review process and change methods for obtaining my
    medicine. The review lasted for four weeks. Multiple times during this
    time period, my doctor and I were told that I had been denied coverage.
    We had to make numerous phone calls to encourage the company and
    specialty pharmacy to review my case again and again. These phone calls
    were extremely difficult as my voice deteriorated from the delay in
    treatment. The automated phone systems were the worst, but the
    representatives also had trouble understanding my broken voice and I
    had to repeat my information over and over. Finally, the company
    determined my treatment is medically necessary and has approved it for
    1 year. After a seven week delay, I am scheduled for my injection and
    am looking forward to a period of spasm-free speaking.
        DMRF was founded in 1976. Since its inception, the goals of DMRF
    have remained to advance research for more effective treatments of
    dystonia and ultimately find a cure; to promote awareness and
    education; and support the needs and wellbeing of affected individuals
    and their families.
        Thank you for the opportunity to present the views of the dystonia
    community, we look forward to providing any additional information.

        [This statement was submitted by Janet Hieshetter, Executive
    Director, Dystonia Medical Research Foundation.]
                                     ______

                   Prepared Statement of The Education Trust
        On behalf of The Education Trust, an organization dedicated to
    closing long-standing gaps in opportunity and achievement separating
    students from low-income backgrounds and students of color from their
    peers, thank you for the opportunity to present testimony on the fiscal
    year 2021 Labor, Health and Human Services, Education and Related
    Agencies (L-HHS-ED) Appropriations bill. We request that the L-HHS-ED
    bill receive its proportional share of the discretionary increase in
    the fiscal year 2021 budget caps to ensure that essential education
    programs have the resources they need.
        It is important to acknowledge that this year's appropriations
    process is operating during an unforeseen and unprecedented crisis. The
    Education Trust has articulated our views on what must be done in
    separate, uncapped stimulus packages to provide for our nation's
    students and protect our public education systems in face of the
    ongoing massive challenges posed by the coronavirus pandemic. During
    this pandemic, we call on Congress to take swift action to:
      --Double the Pell Grant and make it non-taxable in the face of
            widespread job loss, uncertainty about college enrollment, and
            structural racial and financial inequities in college access
            and attainment;
      --Appropriate at least $250 billion for states to help combat
            coronavirus-related declines in financial support for public P-
            12 and higher education systems, accompanied by maintenance of
            effort provisions that ensure state investments do not decline
            past recent levels;
      --Invest at least $6 billion in expanding broadband access to both K-
            12 and college students who are increasingly likely to be
            remote learning into academic year 2020-2021;
      --Continue to fund and expand the Pandemic EBT program, eliminate
            barriers for students and families in accessing SNAP benefits,
            and provide continued flexibility for the Department of
            Agriculture (USDA) to extend relevant nationwide and state-by-
            state waivers to ensure that meals can be served to children in
            whatever form is safe and necessary during the summer and while
            students cannot return to school;
      --Maintain the suspension of student loan payments and interest for
            all Federal loans, and authorize targeted student loan
            forgiveness provisions to give relief to millions of borrowers;
      --Create a dedicated funding stream to address learning loss and
            summer slide made available to LEAs for summer school and
            extended learning opportunities for students and schools with
            the highest need for summer 2020, academic year 2020-2021, and
            summer 2021; and
      --Create a dedicated funding stream to address the need for increased
            academic, social-emotional, and physical supports for students,
            educations, and families during and in the aftermath of the
            coronavirus crisis.
        We look forward to working with staff on these priorities and
    others in the ongoing stimulus and relief process as the crisis
    continues to unfold over the coming months.
        Regarding the regular appropriations process, while there are many
    programs under your jurisdiction that are critical to advancing equity,
    for fiscal year 2021, The Education Trust is focused on the following:
    strengthening the Pell Grant program by increasing the maximum award
    $156 to keep pace with inflation, at a minimum; protecting the existing
    Pell Grant reserve; supporting teachers and school leaders by level
    funding ESSA's Title II-A ($2.13B), the Teacher and School Leader
    Incentive Program ($200 million), the Supporting Effective Educator
    Development Program ($80 million), HEA's Title II's Teacher Quality
    Partnership grants ($50 million); and restoring funding to the School
    Leader Recruitment and Support Program ($14.5M). Finally, we request
    that the Augustus Hawkins Centers, which support enhanced educator
    preparation for teaching candidates at HBCUs and MSIs, receive $40
    million in funding for fiscal year 2021. We are encouraged by the
    slight increase in funding levels provided by the House Subcommittee on
    Labor, Health and Human Services, Education and Related Agencies (L-
    HHS-ED) in the last appropriations cycle for some of these initiatives
    and urge continued support for these critical programs.
                      strengthening the pell grant program
        The Pell Grant program is the cornerstone of Federal financial aid.
    Created in 1972 as the Basic Educational Opportunity Grant, the program
    benefits over 7 million students annually and continues to serve as the
    primary Federal effort to open the door to college for students from
    low-income backgrounds. Over one-third of White students, two-thirds of
    Black students, and half of Latino students rely on Pell Grants every
    year.\1\ Pell Grant dollars are well-targeted to those in need: 83
    percent of Pell recipients come from families with annual incomes at or
    below $40,000, including 44 percent with annual family incomes at or
    below $15,000.\2\
    ---------------------------------------------------------------------------
        \1\ Congressional Budget Office (CBO), January 2017 baseline
    projections for the Pell Grant program, http://bit.ly/2mLy0nk, Table 2;
    and Ed Trust calculation NPSAS:12 using PowerStats.
        \2\ Analysis of Federal Pell Grant Program Annual Data Report,
    available at https://www2.ed.gov/finaid/prof/resources/data/pell-
    data.html.
    ---------------------------------------------------------------------------
    Increasing the Maximum Award and Protecting the Pell Reserve
        The Pell Grant program's impact is shrinking as the maximum award
    has failed to keep pace with the rapidly rising cost of college. The
    purchasing power of the Pell Grant has dropped dramatically since the
    program's inception. In 1980, the maximum Pell Grant award covered 77
    percent of the cost of attendance at a public university. Today, it
    covers just over 28 percent, the lowest portion in over 40 years. If
    the maximum award continues to stagnate, the grant will cover just one-
    fifth of college costs in 10 years.
        We very much appreciate previous increases to the maximum award in
    prior appropriations bills, and we respectfully request that you
    continue to increase the maximum award amount. For fiscal year 2021,
    Congress should, at minimum, increase the maximum award by $156 to
    $6,501 to keep pace with inflation. As indicated above, we also ask
    Congress to include within the forthcoming coronavirus stimulus package
    provisions to double the Pell Grant, helping to reverse the downward
    trend of Pell's purchasing power, ensuring that the maximum Pell award
    covers at least half of the cost of attendance at a public four-year
    institution.
        Congress should also ensure that the program's reserve funds remain
    within the program. Students and families already needed help paying
    for college, and the pandemic will only make the amount of help they
    need even greater. It remains unclear how the combination of the
    pandemic and an economic recession will affect net college enrollment.
    However, current unemployment is the highest it has been since the
    Great Depression, and this may result in a surge in college enrollment
    like the one during the previous recession. Cuts to Pell, especially in
    this context, could quickly put the program in jeopardy and generate
    unnecessary uncertainty for students. If used for anything, the Pell
    reserve should be used to improve and expand Pell.
                     supporting teachers and school leaders
        Research and experience show the powerful impact that teachers and
    school leaders have on student learning. ESSA's Title II program
    provides grants to states and districts that can be used to invest in
    and develop the education profession. These funds can be used to, among
    other things, address inequities in access to effective teachers and
    school leaders, provide professional development, and improve teacher
    recruitment and retention. States and districts can also apply for
    additional competitive grant dollars for programs targeted at specific,
    evidence-based strategies for improving teacher and school leader
    effectiveness and increasing educator diversity. Additionally, HEA's
    Title II Teacher Quality Partnership grants (TQP), awarded to
    partnerships of high-need districts and teacher preparation programs at
    institutions of higher education, can be used to recruit
    underrepresented populations to the teaching profession. As Ed Trust's
    work continues to demonstrate the positive impact that diverse teachers
    and school leaders of color can have on the academic achievement of
    both students of color and White students, we remain supportive of
    Federal dollars to increase and bolster the diversity of the educator
    pipeline.
    Maintain funding for ESSA's Title II-A (Supporting Effective
            Instruction), the Teacher and School Leader Incentive Program
            (TSLIP), the Supporting Effective Educator Development (SEED)
            program, and HEA's Title II Teacher Quality Partnership (TQP)
            grants
        Despite the nationwide attention to the need to invest in
    educators, President Trump's fiscal year 2021 budget request again
    called for the elimination via block grant of the Title II-A grant, the
    SEED program, the TSLIP, and HEA's Title II Teacher Quality Partnership
    grants. We appreciate Congress' prior rejection of similar requests in
    the fiscal year 2019 omnibus appropriations bill.
        At a minimum, in fiscal year 2020, Congress should continue funding
    Title II-A, TSLIP, SEED, and TQP at fiscal year 2020 levels: $2.13B,
    $200 million, $80 million, and $50 million, respectively.
    Fund the Augustus Hawkins Centers of Excellence Grant Program
        Research has shown that students of color benefit tremendously from
    having teachers of color, particularly one of the same racial
    background: they are less likely to be chronically absent or suspended
    from school, more likely to be recommended for gifted and talented
    programs, and low-income Black students who have a Black teacher for at
    least 1 year in elementary school are less likely to drop out of high
    school and more likely to consider college. Despite students of color
    making up a majority of students in public schools, the diversity gap
    for teachers of color still exists in every state.
        The nationwide impact of HBCUs, MSIs, HSIs, and TCUs on producing
    teachers of color cannot be overstated. HBCUs, TCUs, and MSIs,
    collectively, award only 11 percent of the nation's bachelor's degrees
    in education, yet they produce more than 50 percent of the bachelor's
    degrees earned in education by Hispanic and Native Hawaiian and Pacific
    Islander students.\3\ HBCUs graduate approximately 50 percent of the
    nation's African American teachers with bachelor's degrees.\4\ HSIs
    prepare 90 percent of Hispanic teachers, and along with other MSIs,
    constitute a vital pipeline to maintain diversity among our nation's
    teachers.\5\
    ---------------------------------------------------------------------------
        \3\ Branch Alliance for Educator Diversity, ``Homepage,'' available
    at https://www.educatordiversity.org/.
        \4\ Jacqueline Jordan Irvine and Leslie T. Fenwick, ``Teachers and
    Teaching for the New Millennium: The Role of HBCUs,'' The Journal of
    Negro Education 80 (3) (2011): 197-208, available at http://
    www.jstor.org/stable/41341128; National Association for Equal
    Opportunity in Higher Education: Comments to the Department of
    Education proposed rule changes for teacher preparation programs
    available at: http://nafeonation.org/wp-content/uploads/2015/01/
    NADEC_Teacher_Prep_Regulations_Discussion_Document_2-2-15.pdf.
        \5\ Hispanic Association of Colleges and Universities, ``Teacher
    Diversity,'' https://www.hacuadvocates.net/teacherdiversity?1.
    ---------------------------------------------------------------------------
        In light of the importance of these institutions and the increased
    needs they experience as a result of graduating an outsized portion of
    the nation's teachers of color, we request that the Augustus Hawkins
    Centers of Excellence Grant program receive funding for the first time
    since its creation in the bipartisan Higher Education Act of 2008. The
    program would provide critical funding to these key institutions to
    provide increased and enhanced clinical experience and increased
    financial aid to prospective teachers of color, who face higher burdens
    in college access and affordability than their White peers.
        For fiscal year 2021, Congress should fund the Augustus Hawkins
    Centers of Excellence Grant Program at $40 million.
    Restore Funding for the School Leader Recruitment and Support Program
        Landmark research funded by the Wallace Foundation has found
    ``virtually no documented instances of troubled schools being turned
    around without intervention by a powerful leader,'' and the School
    Leader Recruitment and Support Program is the only Federal program
    specifically focused on investing in evidence-based, locally driven
    strategies to strengthen school leadership in high-need schools. A
    recently concluded seven-year study of school districts that created
    pipelines to develop school leaders saw increasing gains in student
    achievement over time, showing how a sustained initiative can
    demonstrate positive effects on student learning.
        It is also worth noting that the need to develop strong and diverse
    school leaders has only been heightened due to the coronavirus
    pandemic. The school closures taking place across America are
    disproportionately hurting students from low-income backgrounds and
    students of color, and they need teachers and leaders who are supported
    and qualified to tackle the historic learning loss and trauma they are
    facing. In order to effectively counter those growing problems, funding
    must be in place to ensure those diverse teachers and leaders get the
    training they need to stay in the classroom.
        During the past decade, we have learned a lot about what works in
    education leadership--lessons made possible, in part, by Federal
    investments in the School Leader Program (the previous iteration of the
    SLRSP). There is still a great deal of work to do, especially when it
    comes to identifying and efficiently preparing effective turnaround
    leaders, as well as sustainably supporting them to accelerate academic
    achievement, close gaps, and maintain improvement over time for all
    students and in every community. The SLRSP is a key lever for seeding
    the next generation of effective school leader development programs,
    promoting equity, advancing ongoing innovation, and sharing cutting-
    edge lessons on transformational leadership with the broader field.
        For fiscal year 2021, Congress should restore funding for the
    School Leader Recruitment and Support Program to $14.5M, its fiscal
    year 2017 appropriation level.
        Thank you for the opportunity to submit testimony. The Education
    Trust looks forward to working with Congress to allocate Federal funds
    in a way that addresses the critical equity gaps that our nation's
    students from low-income backgrounds and students of color continue to
    face. We are happy to respond to any questions or concerns that you may
    have on these topics, and look forward to continuing to work with you
    on coronavirus response stimulus and relief and through the fiscal year
    2021 appropriations process.

        [This statement was submitted by John B. King Jr., President and
    CEO, The
    Education Trust.]
                                     ______

                  Prepared Statement of the Endocrine Society
        The Endocrine Society thanks the Subcommittee for the opportunity
    to submit the following testimony regarding fiscal year 2021 Federal
    appropriations for biomedical research and public health programs. The
    Endocrine Society is the world's oldest and largest professional
    organization of endocrinologists representing approximately 18,000
    members worldwide. The Society's membership includes basic and clinical
    scientists who receive support from the National Institutes of Health
    (NIH) for research on endocrine diseases that affect millions of
    Americans, such as diabetes, thyroid disorders, cancer, infertility,
    aging, obesity and bone disease. Our membership also includes
    clinicians who depend on new scientific advances to better treat and
    cure these diseases. Our organization is dedicated to promoting
    excellence in research, education, and clinical practice in the field
    of endocrinology.
        The Endocrine Society offers the following recommendations for
    fiscal year 2021:
      --At least $44.7 billion for the NIH to support necessary advances in
            biomedical research to improve health;
      --At least $8.2 billion for the CDC to facilitate the translation of
            these advances to improve public health; and
      --$400 million for the Title X program to ensure that women have
            access to appropriate health services.
        The current COVID-19 pandemic is a compelling illustration of why
    we must sustain funding for the NIH and CDC to protect the public's
    health. In addition to a strong annual appropriation for these
    agencies, emergency supplemental funding is required to achieve
    research goals to understand, treat, and prevent future outbreaks.
                   endocrine research improves public health
        Sustained investment by the United States Federal Government in
    biomedical research has dramatically advanced the health and improved
    the lives of the American people. The United States' NIH-supported
    scientists represent the vanguard of researchers making fundamental
    biological discoveries and developing applied therapies that advance
    our understanding of, and ability to treat human diseases. Their
    research has led to new medical treatments, saved innumerable lives,
    reduced human suffering, and launched entire new industries.
        Endocrine scientists are a vital component of our nation's
    biomedical research enterprise and are integral to the healthcare
    infrastructure in the United States. Endocrine Society members study
    how hormones contribute to the overall function of the body and how the
    glands and organs of the endocrine system work together to keep us
    healthy. The multiple body functions governed by the endocrine system
    are broad and essential to overall wellbeing: endocrine functions
    include reproduction, the body's response to stress and injury, sexual
    development, energy balance and metabolism, and bone and muscle
    strength. Endocrinologists also study interrelated systems, for example
    how hormones produced by fat can influence the development of bone
    disease and susceptibility to infections.
        With the emergence of the COVID-19 pandemic, endocrinology has
    taken on a new role in understanding how endocrine systems and
    endocrine disease intersect with the virus and infection pathways. The
    presence of diabetes is a critical risk factor impacting outcomes for
    patients with COVID-19 and understanding shared pathophysiology and
    therapeutic implications of treatments for both diseases remains an
    important area of active research.\1\ As we learn more about the virus
    and implications for patients with endocrine disease, funding for
    public health agencies is more important than ever.
    ---------------------------------------------------------------------------
        \1\ Daniel J Drucker, Endocrine Reviews, Volume 41, Issue 3, June
    2020, bnaa011, https://doi.org/10.1210/endrev/bnaa011.
    ---------------------------------------------------------------------------
           endocrine research is supported by numerous nih institutes
        Many endocrine diseases and disorders are addressed by the missions
    of multiple NIH Institutes and Centers (ICs); research on all
    biological systems and disease states is necessary to advance effective
    therapies for these diseases. For example:
      --Endocrine researchers funded by the National Institute of Aging
            (NIA) help us understand how hormonal treatment for menopause
            might improve stress responses in women.\2\ Other NIA-funded
            researchers are investigating how the loss of ovarian hormones
            due to surgery affects overall aging, physical and cognitive
            function, and risk for Alzheimer's disease pathophysiology.
    ---------------------------------------------------------------------------
        \2\ https://www.endocrine.org/news-room/press-release-archives/
    2017/treating-menopausal-symptoms-can-protect-against-stress-negative-
    effects Accessed March 11, 2018.
    ---------------------------------------------------------------------------
      --Researchers funded by the Eunice Kennedy Shriver National Institute
            of Child Health and Human Development (NICHD) are discovering
            how hormones influence the gut microbiome, which in turn can
            influence the development of polycystic ovarian syndrome
            (PCOS).\3\
    ---------------------------------------------------------------------------
        \3\ Torres, PJ, et al., The Journal of Clinical Endocrinology &
    Metabolism, jc.2017-02153.
    ---------------------------------------------------------------------------
      --Endocrine oncologists supported by the National Cancer Institute
            developed a new drug with a unique mechanism that could inhibit
            the growth of drug-resistant prostate cancer.\4\
    ---------------------------------------------------------------------------
        \4\ https://www.endocrine.org/news-room/press-release-archives/
    2013/new-medication-treats-drug-resistant-prostate-cancer-in-the-
    laboratory. Accessed March 11, 2018.
    ---------------------------------------------------------------------------
      --Diabetologists funded by the National Institute of Diabetes and
            Digestive and Kidney Diseases (NIDDK) are advancing knowledge
            of how insulin-producing cells develop so that we can apply
            this knowledge towards regenerative medicine and cell-based
            approaches to the treatment of diabetes.\5\
    ---------------------------------------------------------------------------
        \5\ Sharon, N, et al., Cell. 2019 Feb 7;176(4):790-804.e13. doi:
    10.1016/j.cell.2018.12.003. Epub 2019 Jan 17.
    ---------------------------------------------------------------------------
      --National Institute of Environmental Health Science (NIEHS)-funded
            researchers are investigating how per-and polyfluoroalkyl
            substances can disrupt endocrine systems resulting in
            reproductive and cognitive health effects.\6\
    ---------------------------------------------------------------------------
        \6\ Vuong, A., et al., Environmental research. 2019 Feb 16; 172
    :242-248.
    ---------------------------------------------------------------------------
      --Neuroendocrine researchers funded by National Institute of Mental
            Health (NIMH) are discovering how overexposure to
            glucocorticoids early in life can cause anxiety--and
            depressive-like behaviors in adults in response to stress, and
            how these behaviors may differ between males and females.
        Moreover, multiple ICs are prepared to use rapidly use emergency
    supplemental funds to prioritize critical endocrine-related research on
    COVID-19 such as:
      --Helping us understand how endocrine-disrupting chemicals (EDCs)
            contribute to chronic diseases that are comorbidities for
            COVID-19.
      --Understanding the short and long-term impacts of COVID-19 infection
            on pregnant women and pediatric patients.
      --Understanding how health disparities contribute to COVID-19 disease
            risk and outcomes.
        An effective biomedical research enterprise therefore requires a
    strong base appropriation for the NIH and sustained support for all ICs
    in addition to emergency supplemental funding to study COVID-19 and
    impacts on patients with endocrine disease.
               nih requires steady, sustainable funding increases
        The Endocrine Society appreciates increases to the NIH budget in
    recent fiscal years; however, the biomedical research community
    requires steady, sustainable increases in funding to ensure that the
    promise of scientific discovery can efficiently be translated into new
    cures. NIH grant success rates are predicted to remain close to
    historically low averages, meaning that highly skilled scientists will
    continue to spend more time writing highly meritorious grants that will
    not be funded. Young scientists will also continue to be driven out of
    biomedical research careers due to the lack of funding. We know that
    when laboratories lose financing; they lose people, ideas, innovations
    and new patient treatments.\7\
    ---------------------------------------------------------------------------
        \7\ Teresa K. Woodruff ``Budget Woes and Research.'' The New York
    Times. September 10, 2013.
    ---------------------------------------------------------------------------
               adequate funding of cdc programs is necessary to
                          protect the public's health
        The CDC plays a critical role in protecting the public's health by
    applying new knowledge to the promotion of health and prevention of
    diseases, including diabetes. The Division of Diabetes Translation
    administers the National Diabetes Prevention Program (National DPP),
    which addresses the increasing burden of prediabetes and Type 2
    Diabetes in the United States. The National DPP creates public and
    private partnerships to provide evidence-based, cost-effective
    interventions that prevent diabetes in community-based settings.
    Through structured lifestyle change programs at local YMCAs or other
    community centers, individuals with prediabetes can reduce the risk of
    developing diabetes by 58 percent in those under 60 and by 71 percent
    in those 60 and older.\8\ In addition to supporting public health and
    prevention activities, CDC's Clinical Standardization Programs in the
    Center for Environmental Health are critical to improving accurate and
    reliable testing of hormones, appropriate diagnosis and treatment of
    disease, and reproduceable public health research. Adequate funding is
    critically important to ensure that CDC has the capacity to address
    existing and emerging threats to public health in the United States and
    around the world.
    ---------------------------------------------------------------------------
        \8\ The Diabetes Prevention Program (DPP) Research Group Diabetes
    Care. 2002 Dec;25(12):2165-71.
    ---------------------------------------------------------------------------
      title x funding provides necessary services and reduces healthcare
                                     costs
        Title X is an important source of funding for ensuring reproductive
    health benefits including both contraceptive and preventive services to
    women. In 2015, a study found that Title X-funded health centers
    prevented 822,000 unintended pregnancies, resulting in savings of $7
    billion to Federal and State Governments. Offering affordable access to
    contraception can have a measurable impact on these costs. For every
    public dollar invested in contraception, short-term Medicaid
    expenditures are reduced by $7.09 for the pregnancy, delivery, and
    early childhood care related to births from unintended pregnancies,
    resulting in savings of $7 billion to Federal and State Governments.\9\
    ---------------------------------------------------------------------------
        \9\ Frost JJ, et al., Publicly Funded Contraceptive Services at
    U.S. Clinics, 2015, New York: Guttmacher Institute, 2017.
    ---------------------------------------------------------------------------
        Title X is the main point of care for low income, under- or un-
    insured, adults and adolescents for affordable contraception, cancer
    screenings, sexually transmitted disease testing and treatment, and
    medically-accurate information on family planning options. However, to
    provide these services to the over 4 million people who depend on Title
    X-funded centers, Title X is significantly underfunded.
                       fiscal year 2021 funding requests
        In conclusion, to avoid loss of promising research opportunities,
    allow budgets to keep pace with inflation, support our public health
    infrastructure, and assure high-quality, evidence-based, and patient-
    centered family planning care while also addressing the COVID-19
    pandemic, the Endocrine Society recommends that the Subcommittee
    provide at least the following funding amounts through the fiscal year
    2021 Labor, Health and Human Services, Education, and Related Agencies
    appropriations bill:
      --$44.7 billion for the National Institutes of Health, as well as
            additional emergency supplemental funds needed to study COVID-
            19
      --$8.2 billion for the Centers for Disease Control and Prevention in
            addition to emergency supplemental funds
      --$400 million for Title X
                                     ______

           Prepared Statement of the Entomological Society of America
        The Entomological Society of America (ESA) respectfully submits
    this statement for the official record in support of funding for
    vector-borne diseases (VBD) research at the U.S. Department of Health
    and Human Services (HHS). ESA requests:
      --$44.7 billion in fiscal year 2021 for the National Institutes of
            Health (NIH), including increased support for VBD research at
            the National Institute of Allergy and Infectious Diseases
            (NIAID);
      --$8.3 billion for the Centers for Disease Control and Prevention
            (CDC), including investments in the budgets for VBD, global
            health, and core infectious diseases; and
      --Robust funding for the Institute of Museum and Library Services
            (IMLS), including $42.7 million for the Office of Museum
            Services.
        ESA urges the subcommittee to support VBD research programs that
    incorporate the entomological sciences as part of a comprehensive
    approach to addressing infectious diseases. These efforts can help
    mitigate the enormous impact that insect carriers of disease have on
    human health. NIH, the nation's premier medical research agency,
    advances human health by supporting research on basic human and
    pathogen biology and by developing prevention and treatment strategies.
    Cutting-edge research in the biological sciences, including the field
    of entomology, is essential for addressing societal needs related to
    environmental and human health. Many species of insects and arachnids,
    including ticks and mites, are carriers or vectors of an array of
    infectious diseases that threaten the health and well-being of people
    worldwide. This threat impacts citizens in every U.S. state and
    territory, as well as military personnel serving at home and abroad.
    The mosquitoes that carry and transmit diseases are responsible for
    more human deaths than all other animal species combined, including
    other humans.\1\ VBD can be particularly challenging to manage due to
    insect and arachnid mobility and their propensity to develop pesticide
    resistance. Further, effective preventative treatments, including
    vaccines, are not available for many VBD.
    ---------------------------------------------------------------------------
        \1\ https://www.gatesnotes.com/Health/Most-Lethal-Animal-Mosquito-
    Week
    ---------------------------------------------------------------------------
        Within NIH, NIAID conducts and supports fundamental and applied
    research related to understanding, preventing, and treating infectious
    diseases. The risk of emerging infectious diseases grows as global
    travel increases in speed and frequency and as environmental conditions
    conducive to population growth of vectors, like mosquitoes and ticks,
    continue to expand globally. Entomological research to understand and
    characterize the relationships between insect vectors and the diseases
    they transmit is essential to enable scientists to reliably monitor and
    predict outbreaks, prevent disease transmission, and rapidly diagnose
    and treat diseases. For example, NIAID-funded researchers are working
    to understand how common prevention tools like mosquito repellent work
    at the molecular level. Although topical mosquito repellents such as
    DEET are a popular tool for preventing mosquito bites and mosquito-
    borne diseases like malaria, the mechanism they use to repel mosquitoes
    is not understood. Using grant funding from NIAID, researchers from
    Johns Hopkins University have determined that DEET is an effective
    mosquito repellent because it masks human odors from female
    mosquitoes.\2\ Researchers can use these findings to develop similar
    safe, low-cost mosquito repellents to prevent mosquito bites, reducing
    the burden of mosquito-borne diseases.
    ---------------------------------------------------------------------------
        \2\ https://www.sciencedirect.com/science/article/abs/pii/
    S0960982219311674.
    ---------------------------------------------------------------------------
        Given that the contributions of the CDC are vital for the health
    security of the nation, ESA requests that the committee provide robust
    support for CDC programs addressing VBD and to continue to support the
    Centers of Excellence on VBD beyond 2021 with at least $10 million per
    year. CDC, serving as the nation's leading health protection agency,
    conducts scientific research and provides health information to prevent
    and respond to infectious diseases and other global health threats,
    irrespective of whether they arise naturally or via acts of
    bioterrorism. Within the core infectious diseases budget of CDC, the
    Division of Vector-Borne Diseases (DVBD) aims to protect the nation
    from the threat of viruses, bacteria, and parasites transmitted
    primarily by mosquitoes, ticks, and fleas. DVBD's mission is carried
    out by a staff of experts in several scientific disciplines, including
    entomology.
        CDC plays a key role in tracking new and emerging diseases, as well
    as in supporting healthcare professionals in identifying and diagnosing
    these diseases. From 2016 to 2017, there was a 46 percent increase in
    reported cases of a group of tick-borne diseases known as Spotted Fever
    Rickettsiosis (SFR), which includes the notably fatal Rocky Mountain
    spotted fever (RMSF).\3\ Disability and death from RMSF are treatable
    if the antibiotic doxycycline is administered within the first five
    days of illness: without treatment, 1 in 5 RMSF cases lead to death.\4\
    Importantly, SFR, including RMSF, has non-specific symptoms, and fewer
    than 1 percent of the SFR cases reported in 2016-2017 had sufficient
    laboratory evidence for diagnosis. In response to this issue, the CDC
    has created a first-of-its-kind education module that will help
    healthcare providers recognize the early symptoms of RMSF and
    distinguish it from other diseases, enabling affected patients to get
    the life-saving treatment they need as quickly as possible.\5\ CDC
    funding is crucial in the development of this and other educational
    tools that equip healthcare providers to effectively combat tick-borne
    diseases.
    ---------------------------------------------------------------------------
        \3\ https://www.ncbi.nlm.nih.gov/pubmed/?term=30969821.
        \4\ https://www.cdc.gov/media/releases/2019/p0513-rocky-mountain-
    spotted-fever-training.html.
        \5\ https://www.cdc.gov/rmsf/resources/module.html.
    ---------------------------------------------------------------------------
        CDC has also awarded nearly $50 million to five universities to
    establish regional centers of excellence (COE) that can help
    effectively address emerging and exotic VBD. The five centers, for
    which current funding expires in 2021, help generate the necessary
    research, knowledge, and capacity to enable appropriate and timely
    local public health action for VBD throughout the United States. The
    COE model has also required collaboration between the research
    institutions and the local and regional departments of health,
    important relationships which haven't generally arisen organically.
    This is critical given significant regional differences in vector
    ecology, disease transmission dynamics, and resources.
        A notable recent development supported by the Southeastern COE in
    VBD involves an innovative ``attract-and-kill'' approach to mosquito
    control. The strategy takes advantage of the discovery that female
    mosquitoes are attracted to the common microbial compound geosmin, and
    can be effectively lured into laying their eggs in traps containing
    geosmin-scented water.\6\ Researchers hope that getting mosquitoes to
    lay eggs in traps will help to break their ongoing breeding cycle and
    ultimately curtail mosquito populations.
    ---------------------------------------------------------------------------
        \6\ https://www.cell.com/current-biology/fulltext/S0960-
    9822(19)31441-1.
    ---------------------------------------------------------------------------
        ESA requests robust funding for IMLS, including no less than $42.7
    million for the Office of Museum Services in fiscal year 2021. The
    services and funding provided by IMLS are critical in several areas--
    research infrastructure, workforce development and economic impact. The
    IMLS provides for the expansion of collections capabilities at American
    museums, which are key for the identification, documentation of
    locations, and classification of entomological species. Funding
    provides for the training and education of students and museum
    professionals. The 21st Century Museum Professionals Program provides
    opportunities for diverse and underrepresented populations to become
    museum professionals, expanding participation in an industry with an
    annual economic contribution of approximately $21 billion. Museums are
    critical to the public understanding of emerging major scientific
    issues through exhibits and programs, and in so doing, support science
    education as an integral part of the nation's educational
    infrastructure. Finally, they make significant long-term contributions
    to economic development in their local communities.
        ESA thanks the committee for the opportunity to provide input on
    these important priorities. ESA, headquartered in Annapolis, Maryland,
    is the largest organization in the world serving the professional and
    scientific needs of entomologists and individuals in related
    disciplines. As the largest and one of the oldest insect science
    organizations in the world, ESA has over 7,000 members affiliated with
    educational institutions, health agencies, private industry, and
    government. Members are researchers, teachers, extension service
    personnel, administrators, marketing representatives, research
    technicians, consultants, students, pest management professionals, and
    hobbyists. For more information about the Entomological Society of
    America, please see http://www.entsoc.org/.

        [This statement was submitted by Robert K.D. Peterson, PhD, Science
    Policy Committee Chair and Past President, Entomological Society of
    America.]
                                     ______

                 Prepared Statement of the Epilepsy Foundation
        Dear Chairman Blunt and Ranking Member Murray:
        The Epilepsy Foundation appreciates the opportunity to submit
    written testimony as the Subcommittee begins its work on the fiscal
    year 2021 Labor, Health and Human Services (HHS), Education and Related
    Agencies appropriations bill. The Epilepsy Foundation respectfully
    requests that the following funding levels be included in the final
    fiscal year 2021 Labor, HHS, Education and Related Agencies bill: $11.5
    million for the Centers for Disease Control and Prevention (CDC)'s
    National Center for Chronic Disease Prevention and Health Promotion's
    Epilepsy program; $44.7 billion for the National Institutes of Health
    (NIH); $5 million for the National Neurological Conditions Surveillance
    System at the CDC; $10 million for the Lifespan Respite Care Program;
    and $8.8 billion for the Health Resources & Services Administration's
    (HRSA) discretionary budget authority. Our written testimony focuses on
    the incredible value and impact of CDC's Epilepsy program.
        The Epilepsy Foundation is the leading national voluntary health
    organization that speaks on behalf of the approximately 3.4 million
    living with epilepsy and seizures. We foster the wellbeing of children
    and adults affected by seizures through research programs, educational
    activities, advocacy, and direct services. Epilepsy is a medical
    condition characterized by seizures, which are sudden surges of
    electrical activity in the brain, that affects a variety of mental and
    physical functions.
        The Institute of Medicine's (IOM) report on epilepsy, Epilepsy
    Across the Spectrum: Promoting Health and Understanding, identifies the
    Epilepsy Foundation and the CDC leaders in addressing many of its
    national recommendations. The Epilepsy Foundation, supported by a
    cooperative agreement with CDC, has made the following progress:
      --Provided education and/or direct training on epilepsy to more than
            81,531 law enforcement and first responders, 58,543 school
            nurses and 419,541 students and teachers;
      --Delivered evidence-based self-management training to people with
            epilepsy so that they can take control of their health, better
            cope with day-to-day challenges and reduce healthcare
            utilization and healthcare costs;
      --Reached underserved populations through:
        --Project ECHO, a tele-mentoring process between an epilepsy
                specialist and primary care providers, in Ohio, Indiana,
                West Virginia and Kentucky;
        --An advanced practice provider model with family nurse
                practitioners and physician assistants;
        --Delivery of signature programs through local Epilepsy Foundation
                offices;
        --Training community health workers in Texas and Illinois; and
        --Outreach to behavioral health professionals in rural settings.
        The Department of Health and Human Services initiative, Healthy
    People 2020, includes the goal to ``increase the proportion of people
    with epilepsy and uncontrolled seizures who receive appropriate medical
    care.'' Continued and increased funding for the CDC epilepsy program is
    critical to meeting this goal-as it is the only public health program
    specifically related to epilepsy that offers a national scope and local
    community programs.
        Approximately 1 in 26 Americans will develop epilepsy at some point
    in their lifetime. There is no ``one size fits all'' treatment option
    for epilepsy, and despite available treatments, about a third of people
    living with epilepsy--approximately 1 million--suffer from uncontrolled
    or intractable seizures,\1\ with many more living with significant
    side-effects. Among adults with epilepsy, only 50 percent have seen
    both a primary care physician and a neurologist and epilepsy specialist
    in the last year; 36 percent have seen a primary care physician only; 8
    percent have seen a neurologist or epilepsy specialist only; and 6
    percent have seen neither.\2\ Thirty-nine percent of those experiencing
    seizures in the last year have not seen a neurologist.\3\ Compared to
    adults with no history of epilepsy, adults with active epilepsy are
    more likely to report not being able to afford their prescription drugs
    (21 percent v. 9 percent) and mental healthcare (8 percent v. 2
    percent) when these were needed in the previous year.\4\ Nine percent
    of those with active epilepsy report not being able to obtain needed
    healthcare because of a lack of transportation.\5\
    ---------------------------------------------------------------------------
        \1\ Patrick Kwan & Martin J. Brodie, Early identification of
    refractory epilepsy, 342 N ENGL J MED 314-9 (2000). Retrieved from
    https://www.nejm.org/doi/pdf/10.1056/NEJM2000020
    33420503.
        \2\ David J. Thurman et al., Health-care access among adults with
    epilepsy: The U.S. National Health Interview Survey, 2010 and 2013, 55
    EPILEPSY BEHAV 184-88 (2015). Retrieved from https://
    www.ncbi.nlm.nih.gov/pmc/articles/PMC5317396/.
        \3\ Ibid.
        \4\ Ibid.
        \5\ Ibid.
    ---------------------------------------------------------------------------
        In fiscal year 2020, $9.5 million was appropriated for the CDC's
    National Center for Chronic Disease Prevention and Health Promotion's
    Epilepsy program. The $2 million additional requested funds will help
    support epidemiologic studies, national dissemination of evidence-based
    programs to address the access of care barriers described above and
    expand provider education and public awareness campaigns to reduce
    stigma. Epilepsy accounts for $19.4 billion in direct costs (medical)
    and indirect costs (lost or reduced earnings and productivity) each
    year. To decrease this public health burden and help more people with
    epilepsy have a high quality of life and access the quality, physician-
    directed and person-centered healthcare they need, we simply must do
    more.
        The Epilepsy Foundation thanks the Subcommittee for its
    consideration. If you have any questions, please contact the Epilepsy
    Foundation's Vice President of Government Relations and Advocacy Laura
    Weidner at lweidner@efa.org.

        Sincerely.

        [This statement was submitted by Laura E. Weidner, Esq., Vice
    President,
    Government Relations & Advocacy, Epilepsy Foundation.]
                                     ______

                         Prepared Statement of Evermore
        Chairman Blunt, Ranking Member Murray, and members of the
    Committee, thank you for the opportunity to provide testimony on the
    fiscal year 2021 appropriations for key U.S. Department of Health &
    Human Service Agencies including the Administration for Children and
    Families (ACF), Centers for Disease Control and Prevention (CDC),
    Centers for Medicare & Medicaid Services (CMS), Health Resources and
    Services Administration (HRSA), Indian Health Service (IHS), National
    Institutes of Health (NIH), Office of Minority Health (OMH), Substance
    Abuse and Mental Health Services Administration (SAMHSA) and the Social
    Security Administration (SSA). Your leadership has resulted in major
    advances in the health and wellbeing of Americans, as well as ensuring
    that our taxpayer dollars are appropriated to our nation's most
    pressing health and human needs.
        I am submitting this testimony on behalf of Evermore, a nonprofit
    dedicated to making the world a more livable place for bereaved
    families by raising awareness, advancing research, and advocating on
    behalf of bereaved families and the professionals who serve them. The
    unexpected or untimely death of a loved one is the most common
    traumatic event Americans experience; many rate it as the worst event
    of their life.\1\ This is not surprising considering suicide, homicide,
    overdoses, mass casualty events, and now COVID-19. Americans are not
    only exposed to an alarming number of tragic and often traumatic
    deaths, but they are encountering a formidable array of barriers to
    bereavement care that compound their suffering. For too long, access to
    quality bereavement care has gone unrecognized by lawmakers, lacked
    funding, and been excluded from Federal health agency priorities.
    Although bereaved families indeed appreciate Congressional ``thoughts
    and prayers,'' we desperately need your leadership on this immediate,
    ongoing, and often invisible public health crisis. Epidemics of
    suicide, opioid overdose, and others including contagious diseases are
    so vast that our national life expectancy dropped for the first time in
    a century. Arguably, we need your leadership more than ever.
    ---------------------------------------------------------------------------
        \1\ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4119479/.
    ---------------------------------------------------------------------------
        Bereavement care is an essential element to any comprehensive
    public health strategy. Our families require more support,
    practitioners require more tools and resources, and we must understand
    more about bereavement. Research not only saves lives, but drives
    innovation.
        Rigorous population-level studies, examining the health behaviors
    and outcomes of millions of people, have concluded that bereaved
    parents,\2\ siblings,\3\ children \4\ and spouses \5\ are all at risk
    of premature death as a result of such loss. This is just the tip of
    the iceberg: bereavement is an underlying driver of the poor health
    undermining our nation's healthcare and social services systems.
    ---------------------------------------------------------------------------
        \2\ https://www.ncbi.nlm.nih.gov/pubmed/12573371.
        \3\ https://www.ncbi.nlm.nih.gov/pubmed/28437534.
        \4\ https://jamanetwork.com/journals/jamapsychiatry/fullarticle/
    2469106.
        \5\ https://www.ncbi.nlm.nih.gov/pubmed/16481639.
    ---------------------------------------------------------------------------
        Consider the following:

        Today, ten million American children are bereaved, with two million
            having lost a parent \6\ and a projected eight million having
            lost a sibling.\7\ These uniquely devastating losses alter the
            lifetime success of these youth. Nearly 90 percent of detained
            youth have experienced the death of a close loved one and 25
            percent subsequently joined a gang.\8\ Research studies have
            found that ``bereaved children experience lower self-esteem,
            reduced resilience, lower grades and more school failures,
            heightened risk of depression, suicide attempts, suicide, and
            premature death due to any cause, drug abuse, violent crime
            involvement, youth delinquency, and a greater number of, and
            more severe, psychiatric difficulties.'' \9\
    ---------------------------------------------------------------------------
        \6\ https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3471209.
        \7\ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4302726/.
        \8\ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4577059/.
        \9\ Layne, C. M., & Kaplow, J. B. (2020). Assessing bereavement and
    grief disorders. In E. A. Youngstrom, M. J. Prinstein, E. J. Mash, & R.
    A. Barkley (Eds.), Assessment of Disorders in Childhood and Adolescence
    (5th ed., pp. 471-508). New York: Guilford Press.

        If this does not cause alarm and encourage leadership, what will?
    These few statistics demonstrate that our nation's Federal health
    agencies should actively work to stem the individual and societal costs
    of bereavement. The cost of inaction is incalculable.
        Our request, a no-cost appropriation, will achieve three goals: (1)
    continue LHHS' leadership in advancing America's health, (2) reveal
    what, if anything, is being done by our Federal health agencies to
    advance bereavement care and (3) alert leadership that bereavement
    itself poses great risks to our society and should rank within future
    priority activities. To that end, our research indicates that some
    agency policies may be inflicting additional harm, including additional
    trauma, on the newly bereaved.
        In March 2020, we worked with the U.S. House of Representatives to
    advance appropriations report language that would require key Federal
    health agencies to report to Congress what activities, if any, they are
    conducting to advance bereavement care for Americans. This is the first
    time in history Federal health agencies will be asked to report
    bereavement-related activities.
        In an effort to ensure parity across legislative chambers, our hope
    is that this subcommittee will adopt the same report language that the
    House advanced. The House-endorsed report language is as follows:

        ``State of Bereavement Care.--The Committee is aware of research
            indicating that individuals and families suffer severe health,
            social, and economic declines following the death of a loved
            one--be it a child, sibling, spouse, or parent. The Committee
            encourages OMH, ACF, CDC, CMS, HRSA, IHS, NIH, SAMHSA, and SSA
            to examine its involvement in activities to advance bereavement
            care for families, including documenting and investigating the
            policies or programs that help or hinder functional coping or
            adaptive processing and the prevalence and outcome of
            bereavement events (what relationships are impacted, how the
            loved one died and their age, risk factors and associated
            health events or outcomes, and biological or physiological
            changes in well-being).''
                      federal agency rationale and context
        Bereavement and its unintended outcomes are inextricably linked to
    many of our Federal health agencies missions, priorities, and programs.
    Outlined below is a brief rationale as to why we suggest each of the
    following Federal agencies; however, we are happy to provide more
    robust explanations upon request:
        ACF.--Given bereavement's alarming prevalence and outcomes among
    children, understanding how ACF integrates, if at all, bereavement care
    into their programs is imperative. Facilitating functional coping and
    adaptive processing among these children following the death of a loved
    one may help stem or reduce other health and human services
    expenditures, as well as alter the trajectory, independence, and
    individual success of these children.
        CDC.--CDC's National Center for Health Statistics (NCHS) collects
    mortality events, but not who survives them or what outcomes survivors'
    experience. Bereavement itself is an ``injurious'' event threatening
    family health, wellbeing, and economic solvency. Scientific evidence
    finds that bereaved parents, as a result of their loss, experience
    cardiac events,\10\ immune dysfunction,\11\ depressive symptoms, poorer
    well-being, less purpose in life, more health complications, marital
    disruption,\12\ psychiatric hospitalization,\13\ a slight increase in
    cancer incidence \14\ as well as premature death for mothers and
    fathers as early as age 40.\15\
    ---------------------------------------------------------------------------
        \10\ https://www.ncbi.nlm.nih.gov/pubmed/12270855.
        \11\ https://psycnet.apa.org/record/1992-05615-001.
        \12\ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2841012/.
        \13\ https://www.nejm.org/doi/full/10.1056/NEJMoa033160.
        \14\ https://acsjournals.onlinelibrary.wiley.com/doi/pdf/10.1002/
    cncr.10943.
        \15\ https://www.ncbi.nlm.nih.gov/pubmed/12573371.
    ---------------------------------------------------------------------------
        CDC is one the nation's most trusted sources of data and evidence
    on population and public health. Given the growing evidence base about
    the profound long-lasting effects of bereavement on individuals and
    community health, bereavement (as a marker of risk) and quality
    bereavement care should be a top priority for CDC. The country needs
    consistent and reliable data on the prevalence and sequelae of
    bereavement on which to formulate sound policy and practice. These data
    will also be important as the CDC begins plans for the next decade of
    Healthy People 2030.
        CMS.--As the purveyor of Medicare and Medicaid benefits, it touches
    the lives of millions of Americans at high-risk of experiencing
    bereavement. Although bereavement counseling is a required Medicare
    benefit for up to 1 year of hospice participants, it is not eligible
    for stand-alone reimbursement. Reimbursement rates are not linked to
    counseling quality, and researchers have found that there are few, if
    any, financial incentives for hospice to ensure quality care.\16\ These
    constitute real barriers to bereaved families' ability to function and
    cope with a death. As the primary funder of hospice benefits, CMS
    should ensure that the quality of services rendered meet sound
    professional standards, including incorporating standard quality
    assurance and improvement practices and a research evidence base. With
    $1.2 trillion taxpayer investment, it is imperative that we understand
    CMS benefit coverage, quality, uptake, and reimbursement rationale.
    ---------------------------------------------------------------------------
        \16\ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3374048/.
    ---------------------------------------------------------------------------
        HRSA.--HRSA's core demographics, footprint and the health risk
    profiles of its participants, make it a prime candidate for helping us
    to understand bereavement offerings and how their programs help (or
    hinder) an individuals' ability to cope and productively return to the
    workforce.
        IHS.--Millions of American Indians and Alaska Natives (AI/NA)
    experience both a higher portion of disease prevalence and a reduced
    life expectancy, when compared to their fellow Americans. As a result,
    AI/AN experience death at younger ages, thus compounding their social
    and health hardships. Requesting current bereavement-related activities
    will help elucidate to what extent, if any, IHS is facilitating
    functional coping and adaptive processing among this high-risk
    population.
        NIH.--In 2016, NIH aligned mortality and prevalence data to its
    spending categories to link its research priorities and our nation's
    public health needs. Because NIH extracts data from CDC and NCHS (and
    CDC does not collect those bereaved by mortality events) bereavement
    does not rank in NIH's 292 top disease conditions or research
    priorities. However, with a $33 billion budget authority, undoubtedly
    NIH is conducting useful research as it relates, directly or
    indirectly, on bereavement care, function, coping, statistics or
    outcomes. The potency of bereavement as a highly prevalent and
    impactful stressor capable of altering lifelong developmental
    trajectories underscores how critical these endeavors are to shaping
    programs, resources, and driving innovation to meet our pressing public
    health needs.
        OMH.--Black Americans are at higher risk of losing a child, spouse,
    sibling or parent throughout the lifespan when compared to their white
    counterparts.\17\ As a result of these unique stressors, black
    Americans face greater adversity and cumulative disadvantage.\18\ OMH
    should play a leadership role in understanding bereavement's
    implications to advance the wellbeing of minority Americans and reduce
    gaps in health disparities and inequities.
    ---------------------------------------------------------------------------
        \17\ https://www.ncbi.nlm.nih.gov/pubmed/28115712.
        \18\ https://journals.sagepub.com/doi/abs/10.1177/0022146517739317.
    ---------------------------------------------------------------------------
        SAMHSA.--Substance abuse and mental health distress play a central
    role in an individual's ability to cope, productively contribute to the
    workforce and maintain stability following the death of a loved one.
    Although it has made major strides in addressing childhood trauma,
    today, none of SAMHSA's five hotlines or three directories of services
    include care for the bereaved. SAMHSA should examine its current
    offerings and determine how bereavement integrates into their existing
    priorities and programs.
        SSA.--SSA offers programs to the bereaved, but many of them are not
    being utilized or have not been updated for decades. Consider, only 45
    percent of bereaved children access Social Security benefits following
    the death of a parent, thus leaving them at greater risk of poverty,
    academic failures and use of other social programs.\19\ Further, the
    lump sum death benefit (LSDB) program offers $255 to bereaved
    individuals to help subsidize the high cost of funerals (estimates
    range from $7,000 to $12,000). LSBD has not been updated since
    1954.\20\ SSA's programs, data and policies warrant examination.
    ---------------------------------------------------------------------------
        \19\ https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3471209.
        \20\ https://fas.org/sgp/crs/misc/R43637.pdf.
    ---------------------------------------------------------------------------
        Thank you for the opportunity to present this testimony on behalf
    of bereaved Americans.

        [This statement was submitted by Joyal Mulheron, Founder &
    Executive Director, Evermore.]
                                     ______

        Prepared Statement of the Families and Friends of Care Facility
                                   Residents
        Chairman Blunt, Ranking Member Murray and Committee Members,
        Thank you for the opportunity to submit testimony. Thank you for
    your public service.
                         interest and request of ff-cfr
        I am the mother and guardian of John Farrar Sherman, aged 51, who
    functions on the level of a young toddler. I submit this testimony in
    behalf of Arkansas' statewide parent-guardian association, Families &
    Friends of Care Facility Residents (FF-CFR), a 501 (c)3 organization
    which was formed by my late husband and other concerned families in
    1991 in support of Arkansans with life-long permanent disabilities.
    Most, but not all, members of FF-CFR have loved ones with disabilities
    receiving residential treatment services in one of Arkansas' five human
    development centers which are Medicaid-certified intermediate care
    facilities (ICFs).
        FF-CFR is not requesting Federal funds. Rather, we request relief
    from the use of funds by Department of Health and Human Services to
    undermine and eliminate intermediate care facilities (ICFs), the
    specialized long-term care facilities for persons with cognitive and
    other developmental disabilities.
             false narrative: national trend to close institutions
        Our families watch with concern as states consolidate/downsize and
    close public and private intermediate care facilities (ICFs), the
    Medicaid certified congregate care programs designed to address the
    urgent care needs of persons with cognitive and other life-long
    developmental disabilities. A false narrative is being promoted that
    all persons with disabilities thrive in small-less-regulated-care
    programs and also that deinstitutionalization from licensed facilities
    is a ``national trend.'' We submit that vulnerable persons are dying
    horrific deaths when they are barred from appropriate care in licensed
    facilities. We submit that the so-called ``national trend'' of
    deinstitutionalization has been: (1) created and encouraged by
    Department of Health and Human Services programs and policies which
    destructively promote one needed program (``community'' care) over
    another needed program (``institutional'' care); (2) fueled by Federal
    dollars; and (3) encouraged by insufficient oversight of Federal
    programs, policies and funds being used to weaken and eliminate the ICF
    option. Finally, the ``national trend'' of deinstitutionalization has
    been promoted by federally funded advocacy organizations and programs
    which do not represent our family members with disabilities and their
    peers, individuals living with life-long profound or severe cognitive
    deficits and other developmental disabilities, most of whom are
    nonverbal and who are unable to self-advocate.
                        mortality of vulnerable persons
        Do you read stories in the media of horrific deaths of persons
    unable to care for themselves? I do. And each time I read a story about
    the awful death of such an at-risk individual, that person is not
    faceless to me. He or she has a family; they are someone's daughter or
    son/sister or brother. When I read such stories, I have these thoughts:
    without me and without my state's specialized residential treatment
    programs, my son could be the subject of such an article.
        Attached hereto are summaries of two stories which were published
    recently in our statewide paper. See FF-CFR Attachment 1. Through the
    Internet, one can download the full reports. Here is the reality about
    me reading the stories: yes, I see my son and his peers in them, but I
    also know from my years of advocacy work that the two states where
    these two individuals died their lonely horrible deaths are states
    which have closed admissions to the ICF program. In the states where
    these deaths occurred, qualified persons are denied admission to the
    specialized residential treatment programs for persons with cognitive
    and other developmental disabilities.
        There is a connection between the work of the LHHS subcommittee,
    the funding of Department of Health and Human Services programs and
    grants, and the policies which have led to states closing admissions to
    ICF programs.
                                    request
        We respectfully request your consideration for report language in
    the fiscal year 2021 LHHS spending bill barring Federal funds from
    incentivizing states to close their specialized facilities for persons
    unable to care for themselves. Suggested Language Attached hereto, FF-
    CFR Attachment 2.
        Respectfully submitted.
        [This statement was submitted by Carole L. Sherman, Families &
    Friends of Care Facility Residents.]
                                     ______

              Prepared Statement of the Family Planning Coalition
        Chairman Blunt, Ranking Member Murray, and Subcommittee Members:
        The undersigned organizations collectively represent millions of
    providers, patients, administrators, researchers, public health
    professionals, and advocates who support access to high-quality family
    planning services. Established 50 years ago, the Title X family
    planning program helps ensure that millions of individuals can obtain
    high-quality sexual and reproductive healthcare. We are deeply
    concerned by the administration's continued attacks on the integrity of
    the Title X program, including the devastating program rule that the
    Department of Health and Human Services finalized in 2019.\1\ Today,
    more than 1.5 million Title X patients no longer have access to the
    Title X-funded services at the site they used in 2018 due to the rule.
    ---------------------------------------------------------------------------
        \1\ Department of Health and Human Services. Final Rule.
    ``Compliance with Statutory Program Integrity Requirements.'' Federal
    Register 84 (March 4, 2019): 7714-7791.
    ---------------------------------------------------------------------------
        We urge you to use the fiscal year 2021 Labor, Health and Human
    Services, Education, and Related Agencies appropriations bill to make a
    strong statement in support of high-quality, evidence-based, and
    patient-centered family planning care and against the Title X program
    rule. We request that you include language to block the rule and to
    allow existing and former networks to rebuild and begin to reverse the
    damage caused by the rule. With that language in place, we urge you to
    appropriate $400 million for the program.
                      title x is a critical source of care
        In 2018, Title X helped close to 4 million people access family
    planning and related health services at nearly 4,000 health centers.\2\
    More than half of users identified as people of color.\3\ For many
    individuals, particularly those who have low incomes, are under- or
    uninsured, or are adolescents, Title X has been their main access point
    to obtain affordable and confidential contraception, cancer screenings,
    sexually transmitted disease testing and treatment, complete and
    medically accurate information about their family planning options, and
    other basic care. In fact, a study found that in 2016, six in ten women
    seeking contraceptive services at a Title X health center saw no other
    healthcare provider that year.\4\
    ---------------------------------------------------------------------------
        \2\ Christina Fowler et al, ``Family Planning Annual Report: 2018
    National Summary,'' RTI International (August 2019). https://
    www.hhs.gov/opa/sites/default/files/title-x-fpar-2018-national-
    summary.pdf.
        \3\ Id. This calculation includes persons who identify as non-white
    and persons who identify as white and Hispanic.
        \4\ Megan Kavanaugh, Mia Zolna, and Kristen Burke, ``Use of Health
    Insurance Among Clients Seeking Contraceptive Services at Title X-
    Funded Facilities in 2016,'' Perspectives on Sexual and Reproductive
    Health 50.3 (September 2018). https://onlinelibrary.wiley.com/doi/full/
    10.1363/psrh.12061.
    ---------------------------------------------------------------------------
        The data show that Title X makes a difference for patients. In
    2016, Title X-supported contraceptive services helped patients prevent
    an estimated 755,000 pregnancies.\5\ Title X also supports important
    health center efforts that are not reimbursable under insurance,
    including staff training and community-based sexual and reproductive
    health education programs. Moreover, research has shown that Title X-
    supported services saved the Federal and state governments
    approximately $4.4 billion in 2016,\6\ and 75 percent of American
    adults-including 66 percent of Republicans, 75 percent of Independents,
    and 84 percent of Democrats-support the program.\7\
    ---------------------------------------------------------------------------
        \5\ Jennifer Frost et al, ``Publicly Supported Family Planning in
    the United States: Likely Need, Availability and Impact, 2016,''
    Guttmacher Institute (October 2019). https://www.guttmacher.org/report/
    publicly-funded-contraceptive-services-us-clinics-2015.
        \6\ Rachel Benson Gold, Adam Sonfield, ``Title X Family Planning
    Services: Impactful but at Severe Risk,'' Guttmacher Institute (October
    2019). https://www.guttmacher.org/article/2019/10/title-x-family-
    planning-services-impactful-severe-risk.
        \7\ Survey Says: Birth Control Support. The National Campaign to
    Prevent Teen and Unplanned Pregnancy (2017). https://
    thenationalcampaign.org/resource/survey-says-january-2017.
    ---------------------------------------------------------------------------
        Title X's key role in the public health safety net has been
    threatened by the Trump administration's 2019 program rule. Following
    rule implementation in July 2019, 18 grantees, along with many
    subrecipients, left the program rather than comply with the onerous,
    medically unnecessary requirements. In 2018, the approximately 1,000
    sites run by those entities served more than 1.5 million patients,
    including the many patients served by Planned Parenthood. Health
    centers that remained in the program face the challenge of implementing
    a misguided rule while attempting to keep their doors open and services
    available to, and affordable for, patients.
        To rectify this situation, we urge Congress to include language in
    the fiscal year 2021 Labor-HHS bill that blocks implementation of the
    rule and allows entities that left the program to rejoin it. It is
    crucial that remaining and previous grantees be able to rebuild their
    networks and trusted services once the rule is no longer in place.
    These steps are critical to ensure that people across the country
    regain access to affordable services at their preferred family planning
    provider.
                        title x is severely underfunded
        In addition to the challenges posed by the Title X rule, the
    program is unable to serve as many patients as need care due to woeful
    underfunding. In 2016, researchers from the Centers for Disease Control
    and Prevention, the Office of Population Affairs, and George Washington
    University estimated that Title X would need $737 million annually to
    deliver family planning care to all uninsured women with low incomes in
    the United States.\8\ This estimate understates the true need for Title
    X, as it does not include an estimate of costs for men (who made up 13
    percent of patients in the network in 2018),\9\ gender non-binary
    persons, and the insured patients who rely on Title X's confidentiality
    protections.
    ---------------------------------------------------------------------------
        \8\ Euna August, et al, ``Projecting the Unmet Need and Costs for
    Contraception Services After the Affordable Care Act,'' American
    Journal of Public Health (February 2016): 334-341.
        \9\ Fowler, ``FPAR 2018.''
    ---------------------------------------------------------------------------
        The gap between the funds appropriated and the funds needed has
    only grown in recent years. From 2010 to 2016 the number of women in
    need of publicly funded family planning services increased by 1.5
    million,\10\ but Congress cut Title X's funding by $31 million over
    that period. That decrease unfortunately corresponded to dramatic
    decreases in patients served at Title X-funded sites, from 5.22 million
    seen in 2010 \11\ to just under 4 million seen in 2018.\12\
    ---------------------------------------------------------------------------
        \10\ Frost, ``Publicly Supported Family Planning Services in the
    United States.''
        \11\ Christina Fowler et al, ``Family Planning Annual Report: 2010
    National Summary,'' RTI International (September 2011). https://
    www.hhs.gov/opa/sites/default/files/fpar-2010-national-summary.pdf.
        \12\ Fowler, ``FPAR 2018.''
    ---------------------------------------------------------------------------
        We are deeply concerned about diminishing access to high-quality
    family planning services and urge Congress to take an initial step to
    reverse this devastating trend by appropriating $400 million for Title
    X in fiscal year 2021. This funding increase, however, must be paired
    with the language referenced above, and we urge you to prioritize
    blocking the 2019 rule and creating the pathway for entities to reenter
    the program.
              title x is more important than ever due to covid-19
        The need for the Title X program and network of providers it funds
    is even more critical as the novel coronavirus affects communities
    across the country. Family planning and sexual health services are
    often time-sensitive, and the need for these services does not stop
    during a pandemic. In fact, recent public opinion polling shows that a
    majority of U.S. adults (65 percent) think now is a bad time for
    individuals and couples to try to get pregnant, and only 5 percent of
    adults would consider it ``less essential'' for individuals to have
    access to birth control during the coronavirus pandemic.\13\ Now more
    than ever, the Title X provider network, already struggling in the wake
    of years of attacks and chronic underfunding, needs the robust support
    of Congress to continue to provide high-quality family planning and
    sexual health services.
    ---------------------------------------------------------------------------
        \13\ Morning Consult, on behalf of the National Family Planning &
    Reproductive Health Association (NFPRHA), conducted a poll using a
    national sample of 2,200 US adults, between April 30--May 2, 2020. The
    interviews were conducted online, and the data were weighted to
    approximate a target sample of US adults based on age, educational
    attainment, gender, race, and region. Results from the full survey have
    a margin of error of +/-2 percent.
    ---------------------------------------------------------------------------
        Furthermore, family planning staffing has been impacted at health
    centers due in some instances to employees being redeployed to COVID-19
    response and because of the individual toll the pandemic has taken on
    staff, including short-term and long-term absences because employees
    need to tend to health and family issues. Staffing issues coupled with
    decreased patient visits and the likelihood that states will need to
    cut family planning funding in future budgets to help backfill COVID-19
    expenditures means that current public funding for safety-net health
    centers is simply not enough. Access to essential services depends on
    health centers receiving sufficient funds to remain open and
    programmatic rules that allow expert providers to offer the best
    possible care.
                       **********************************
        During the fiscal year 2021 appropriations process, Congress has
    the opportunity to stand against relentless attacks on family planning
    and support strong public funding for the Title X family planning
    network. The undersigned organizations urge you to begin the expansion
    of family planning and related healthcare services with this critical
    language and meaningful investment in Title X.
        If you have any questions or would like additional information,
    please contact Lauren Weiss at the National Family Planning &
    Reproductive Health Association at lweiss@nfprha.org.
        Thank you for considering these requests.

        Sincerely,

    Abortion Care Network
    ACLU
    AIDS Action Baltimore
    AIDS Alabama
    AIDS Alliance for Women, Infants, Children, Youth & Families
    AIDS Foundation of Chicago
    AIDS United
    Alliance for Justice
    American Academy of Pediatrics
    American Atheists
    American College of Nurse-Midwives
    American College of Obstetricians and Gynecologists
    American Medical Student Association
    American Public Health Association
    American Sexual Health Association
    American Society for Reproductive Medicine
    Association of Nurses in AIDS Care
    Association of Schools and Programs of Public Health
    Association of Women's Health, Obstetric and Neonatal Nurses
    Black AIDS Institute
    Black Women's Health Imperative
    Cascade AIDS Project
    Catholics for Choice
    Center for American Progress
    Center for Reproductive Rights
    Endocrine Society
    Equality California
    Equality North Carolina
    Equity Forward
    Girls Inc.
    Guttmacher Institute
    Hadassah, The Women's Zionist Organization of America, Inc.
    Healthy Teen Network
    HIV Medicine Association
    Human Rights Campaign
    If/When/How: Lawyering for Reproductive Justice
    In Our Own Voice: National Black Women's Reproductive Justice Agenda
    Ipas
    Jacobs Institute of Women's Health
    Jewish Women International
    NARAL Pro-Choice America
    NASTAD
    National Abortion Federation
    National Asian Pacific American Women's Forum (NAPAWF)
    National Association of County and City Health Officials
    National Coalition of STD Directors
    National Council of Jewish Women
    National Family Planning & Reproductive Health Association
    National Hispanic Medical Association
    National Institute for Reproductive Health (NIRH)
    National Latina Institute for Reproductive Health
    National Medical Association
    National Network of Abortion Funds
    National Organization for Women
    National Partnership for Women & Families
    National Women's Health Network
    National Women's Law Center
    North Carolina AIDS Action Network
    Nurses for Sexual and Reproductive Health
    Ovarian Cancer Research Alliance
    PAI
    People For the American Way
    Physicians for Reproductive Health
    Planned Parenthood Federation of America
    Population Connection Action Fund
    Population Institute
    Power to Decide
    Raising Women's Voices for the Health Care We Need
    Religious Coalition for Reproductive Choice
    Reproductive Health Access Project
    Ryan White Medical Providers Coalition
    San Francisco AIDS Foundation
    SIECUS: Sex Ed for Social Change
    Silver State Equality-Nevada
    Society for Adolescent Health and Medicine
    Southern AIDS Coalition
    The AIDS Institute
    The Well Project
    Treatment Action Group
    Union for Reform Judaism
    Women of Reform Judaism

                                     ______

     Prepared Statement of the Federal AIDS Policy Partnership's Research
                                 Working Group
        On behalf of the Federal AIDS Policy Partnership's Research Working
    Group, we thank Chairman Senator Blunt, Ranking Member Senator Murray,
    and members of the Committee for the opportunity to submit testimony to
    the Senate LHHS Subcommittee on fiscal year 2021 Appropriations for the
    National Institutes of Health (NIH) in regards to protecting,
    strengthening, and expanding our nation's HIV/AIDS research agenda. The
    Research Work Group (RWG) of the Federal AIDS Policy Partnership (FAPP)
    is a coalition of more than 60 national and local HIV/AIDS research
    advocates, patients, clinicians and scientists from across the country.
    Our goal is to advance and support U.S. leadership to accelerate
    progress in the field of HIV/AIDS research. The FAPP RWG urges the
    subcommittee to recommend a fiscal year 2021 budget request level of at
    least $44.7 billion for the NIH, and ask that at least $3.502 billion
    be allocated for HIV research at the NIH in fiscal year 2021.
        Public investments in health research via NIH have paid enormous
    dividends in the health and wellbeing of people in the U.S. and around
    the world, particularly for people living with, or vulnerable to, HIV.
    NIH funded AIDS research has supported innovative basic science for
    better drug therapies, and evidence-based behavioral and biomedical
    prevention interventions which have saved and improved the lives of
    millions. NIH funding has contributed to over 210 approvals for a range
    of novel therapeutics between 2010 through 2016, with new anti-
    infectives for HIV and HCV receiving the second largest fraction of
    those approvals. Additionally, NIH support was crucial in the
    development of pre-exposure prophylaxis (PrEP), an HIV prevention tool
    that is upwards of 99 percent effective in preventing sexual
    transmission. Now more than ever, NIH-supported HIV research is
    critical to advancement of possible treatments and a vaccine to counter
    the rising COVID-19 pandemic.
        HIV research advances at the NIH hold the potential to end the AIDS
    epidemic, as well as update prevention approaches and improve outcomes
    along the treatment cascade--a cornerstone of the Trump
    Administration's initiative to End the HIV Epidemic in the U.S. In
    addition, the average age of people living with HIV in the United
    States is increasing, so it also remains critically important to make
    substantial investments in research on co-morbidities and new
    antiretroviral therapies. This aging population needs to stay healthy
    and virally suppressed in order to bring community viral load to zero.
        Federal support for HIV/AIDS research has cross-benefits for new
    treatments for other diseases, including cancer, heart disease,
    Alzheimer's, hepatitis, osteoporosis, and a wide range of autoimmune
    disorders. Several HIV/AIDS treatments, notably lopinavir/ritonavir,
    have been researched as treatments for the novel coronavirus (SARS-CoV-
    2)--saving months of research time and, in the process, potentially
    countless lives. Coronavirus vaccine research is now ongoing using
    platforms and technology, such as Ad26, previously developed for use as
    an HIV vaccine. These cross-disease benefits of HIV research provide
    tremendous value in the dollars invested and necessary infrastructure
    to support our nation's response to this emerging public health crisis.
        Yet, the Administration's fiscal year 2021 budget proposal ignores
    these significant contributions made by NIH and the need for a strong
    HIV/AIDS research agenda in the End the HIV Epidemic initiative with
    deep cuts in funding made to the Office of AIDS Research (OAR) that
    places current studies, including for a vaccine and a cure for HIV, in
    peril. These cuts also have a collateral effect by undermining existing
    research infrastructure to develop tools needed to counter COVID-19,
    which were made possible through historical and sustained investments
    to HIV research.
        The fiscal year 2021 President's Budget request for the NIH HIV
    research program at OAR is $2,812 billion, a decrease of $263 million
    compared to fiscal year 2020 levels. The proposal includes substantial
    cuts (see table below) to HIV research into prevention, cure, and HIV
    aging research. Scientific progress on cure and vaccine research
    remains steady and iterative, and cutting research funding at this
    juncture will only lengthen the time horizons or completely impede
    these studies from realizing the potential of these investments. To
    truly achieve an end to the HIV epidemic, we need a vaccine and cure
    alongside our current slate of therapeutics and prevention modalities.
    To support a science-based agenda for COVID-19, we must continue to
    strengthen HIV research. In sum, these cuts would do harm to the HIV
    research agenda, the health of people living with HIV, and the prospect
    of new tools to combat COVID-19 in which HIV research infrastructure is
    being relied upon. We urge the subcommittee to reject these cuts.

        Furthermore, since 2003, funding for NIH HIV research has failed to
    keep up with our existing research needs--damaging the success rate of
    approved grants and leaving very little money to fund promising new
    research--despite increases to the overall NIH budget. According to the
    Biomedical Research and Development Price Index (BRDI)--which
    calculates how much the NIH budget must change each year to maintain
    purchasing power--between fiscal year 2003 and fiscal year 2017, the
    NIH budget in constant dollars according to BRDI will have declined by
    more than a third. The cuts proposed in the President's budget would
    only further widen the gap.
        Investment by the NIH has transformed the HIV epidemic from a
    terrible, untreatable disease to a chronic condition that can be
    managed through once-a-day drug regimens. Now is the time to increase
    investment for the NIH to finish the job and end the HIV epidemic
    through strategic, science-based interventions. NIH funding of HIV/AIDS
    research provides an example of innovation at work where investment in
    basic and translational research, working in partnership with industry
    and community, can move quickly to develop solutions. NIH investments
    in HIV/AIDS research add value by seeding ideas later taken up in
    industry partnerships and creating innovation incubators for important
    medical advances with significant health impact.
        Robust funding for NIH overall enables research universities to
    pursue scientific opportunity, advance public health, and create jobs
    and economic growth. NIH funding puts approximately 300,000 scientists
    to work at research institutions across the country. According to NIH,
    each of its research grants creates or sustains six to eight jobs and
    NIH-supported research grants and technology transfers have resulted in
    the creation of thousands of new independent private sector companies.
        The race to find better treatments and a cure for cancer,
    Alzheimer's, heart disease, HIV/AIDS, and other diseases, and for
    controlling global epidemics like AIDS, tuberculosis, coronavirus, and
    malaria, all depend on a robust long-term investment strategy for
    health research at NIH. There can be no innovation without reliable and
    adequate research funding. Congress should ensure the nation does not
    delay vital HIV/AIDS research progress. We must protect HIV/AIDS
    research funding to sustain research capacity and maintain our
    worldwide leadership in HIV/AIDS research and innovation.
        To that end, we urge the subcommittee to consider a needed increase
    to the overall fiscal year 2021 budget request level of at least $44.7
    billion for the National Institutes of Health (NIH) consistent with the
    request of the Ad Hoc Group for Medical Research. While this increase
    gets us closer to meeting the recent Trans-NIH AIDS Research By-Pass
    Budget Estimate for fiscal year 2020, we ask the committee that at
    least $3.502 billion be allocated for HIV research at the NIH in fiscal
    year 2021, an increase of $426 million. We also urge the subcommittee
    to consider approaches to ensure the HIV research budget receives
    increases alongside other important and intersecting biomedical
    research at NIH. The fiscal year 2021 President's Budget request
    includes reallocation of $6 million in existing Centers for AIDS
    Research (CFAR) funding to support this initiative. We believe that
    CFARs are suited well to reach this goal, but funding must be new
    funding for this initiative to succeed. We urge the subcommittee to
    direct specific and increased CFAR funding for this purpose.
        In conclusion, the RWG calls on Congress to continue the bipartisan
    Federal commitment towards combating HIV as well as other chronic and
    life-threatening illnesses by increasing funding for NIH in fiscal year
    2021. This is especially critical in a time where science is needed to
    counter the escalating COVID-19 pandemic. A meaningful commitment
    towards maintaining the U.S. pre-eminence in HIV research and fostering
    innovation cannot be met without prioritizing the research investment
    at NIH that will lead to tomorrow's lifesaving vaccines, treatments,
    and cures that are needed to end the HIV epidemic here and abroad.
    Thank you for the opportunity to provide these written comments.
                                     ______

        Prepared Statement of the Federation of American Societies for
                              Experimental Biology
        The Federation of American Societies for Experimental Biology
    (FASEB) respectfully requests a minimum of $44.7 billion in fiscal year
    2021 for the National Institutes of Health (NIH).
        The NIH is the nation's largest funder of biomedical research,
    providing competitive grants to support the work of 300,000 scientists
    at universities, medical centers, independent research institutions,
    and companies nationwide.
        Congress has renewed its commitment to this critical research
    agency, providing robust, sustained, and predictable budget increases
    over the last five fiscal years (Figure 1). With these resources, NIH
    has accelerated progress across all areas of medical science, including
    regenerative medicine, cancer immunotherapy, and neurological
    health.\1,2,3\ The agency has also expanded its commitment to support
    more of the best and brightest young scientists, the next generation of
    our biomedical research enterprise.\4\

        \1\ NIH Regenerative Medicine Innovation Project, National
    Institutes of Health, Bethesda, MD.
        \2\ NCI's Role in Immunotherapy Research, National Cancer
    Institute, Bethesda, MD.
        \3\ The BRAIN Initiative Summary, National Institutes of Health,
    Bethesda, MD.
        \4\ NIH Grants and Funding, Next Generation Research Initiative,
    National Institutes of Health, Bethesda, MD.
    ---------------------------------------------------------------------------
        Though the NIH is in a stronger position than it was just a few
    years ago, Congress must continue to increase biomedical research
    funding because our nation and the world are confronting daunting
    public health threats, especially given a changing global climate. More
    research will be needed to address increased risks posed by infectious
    diseases and greater exposure to environmental pollutants.\5\
    ---------------------------------------------------------------------------
        \5\ IPCC AR5 Climate Change 2014, Chapter 11: Human Health:
    Impacts, Adaptation, and Co-Benefits.
    ---------------------------------------------------------------------------
        In the U.S., we also must address the needs of an aging population.
    NIH-supported research is developing therapies and cures for the whole
    spectrum of age-related disorders.\6\
    ---------------------------------------------------------------------------
        \6\ Aging Well in the 21st Century: Strategic Directions for
    Research on Aging, National Institute on Aging, Bethesda, MD.
    ---------------------------------------------------------------------------
        The great challenges of a changing climate and our aging population
    will require us to expand our robust investment in biomedical research.
    A $44.7 billion budget ($3 billion above fiscal year 2020) would allow
    NIH to continue its commitment to the Next Generation Researchers
    Initiative; provide $404 million already authorized through the 21st
    Century Cures Act for key research initiatives; and provide a 3 percent
    budget increase across NIH Institutes and Centers, allowing them to
    bolster research areas in need of resources.

                                     ______

            Prepared Statement of the Federation of Associations in
                         Behavioral and Brain Sciences
        The Federation of Associations in Behavioral and Brain Sciences
    (FABBS) represents 26 scientific societies and nearly 70 university
    departments whose scientific members and faculty share a commitment to
    advancing knowledge in the sciences of mind, brain, and behavior.
    Through research in these sciences, FABBS members increase
    understanding of the human element of the most pressing challenges
    facing society, improving the health and education of our citizens.
    FABBS appreciates the opportunity to submit testimony in support of the
    Federal agencies investing in behavioral and cognitive science. For
    fiscal year 2021, FABBS encourages your subcommittee to provide the
    National Institutes of Health (NIH) with a budget of at least $44.7
    billion, the National Center for Health Statistics (NCHS) within the
    Center for Disease Control, a budget of at least $189 million, the
    Agency for Healthcare Research and Quality (AHRQ) at $471 million, and
    the Institute of Education Sciences (IES) within the Department of
    Education a budget of $670 million.
        During this unprecedented time, FABBS members are actively working
    to help mitigate the extensive damage of the COVID-19 pandemic.
    Behavioral and brain scientists are conducting research on strategies
    to reduce transmission of the virus such as hand washing and restraint
    from touching one's face; identifying interventions to support mental
    health and recovery from addiction; developing decisionmaking tools for
    response actions; and adjusting to online learning for students. These
    efforts are contributing to the Federal and local responses. In many
    cases, prior federally-sponsored research at NIH, NCHS, AHRQ and IES
    has helped create the expertise and capabilities essential during the
    global pandemic. We thank the subcommittee for its role in providing
    supplemental appropriations to fight the pandemic including the funds
    provided to the NIH.
        FABBS would like to thank this subcommittee for their strong
    bipartisan vision and diligence last year. The community is extremely
    grateful that this subcommittee successfully completed a final Labor,
    Health and Human Services, Education budget for fiscal year 2020,
    sparing these agencies from experiencing an extended government
    shutdown. We very much hope that we will see similar success funding
    these agencies for fiscal year 2021.
                         national institutes of health
        We sincerely thank the Labor HHS Appropriations Subcommittee for
    its diligent work and considerable increases to NIH over the past 4
    years. As members of the Ad Hoc Group for Medical Research and the
    Coalition for Health Funding, FABBS recommends at least $44.7 billion
    for NIH in fiscal year 2021. FABBS members contribute to the NIH
    mission of seeking fundamental knowledge about the behavior of living
    systems and the application of that knowledge to enhance health,
    lengthen life, and reduce illness and disability. FABBS members
    contribute to the advances in numerous institutes and centers.
        FABBS members have a particular interest in the Office of
    Behavioral and Social Science Research (OBSSR). OBSSR was created to
    coordinate and promote basic, clinical, and translational behavioral
    and social science research at NIH. The office serves an essential
    function in enhancing trans-NIH investments in longitudinal datasets,
    technology in support of behavior change, innovative research
    methodologies, and promoting the inclusion of behavioral science in
    initiatives at the NIH Institutes and Centers (IC). In partnership with
    other Institutes and Centers, OBSSR co-funds highly rated grants that
    the ICs cannot fund alone, and coordinates NIH's high-priority program
    on gun violence prevention research.
        While the NIH budget has grown in recent years, funding for OBSSR
    has not seen commensurate increases. We recognize that, located in the
    Office of the Director, OBSSR does not have a specific appropriation.
    Nonetheless, FABBS appreciates the opportunity to express support for
    OBSSR, underscore its key role supporting the mission of NIH, and raise
    concerns about recent flat funding.
        National Center for Health Statistics (NCHS), Center for Disease
    Control--As members of the Friends of NCHS, FABBS urges the
    Subcommittee to appropriate $189 million (an increase of $14.6 million
    and realignment of $14 million in ongoing transfers) to NCHS in fiscal
    year 2021. This increase would restore the NCHS budget to the fiscal
    year 2010 funding level (adjusted for inflation) enabling NCHS to
    continue to produce its essential existing surveys and reports without
    interruption. Communities across the country rely on the high-quality
    data provided by NCHS to understand and improve health. We greatly
    appreciate the Subcommittee's longstanding support of NCHS and the data
    it produces on all aspects of our healthcare system, such as opioid and
    prescription drug use, healthcare disparities, and causes of death.
               agency for healthcare research and quality (ahrq)
        Consistent with the Friends of AHRQ, FABBS requests $471 million
    for AHRQ in fiscal year 2021. AHRQ is the only Federal agency that
    funds research at universities and other research institutions
    throughout the nation on health systems--the ``real-life'' patient who
    has complex comorbidities, the interoperability of different
    technological advances, and the interactions and intersections of
    healthcare providers.
        Institute of Education Sciences (IES), U.S. Department of
    Education.--As members of the Friends of IES, FABBS encourages the
    subcommittee to appropriate at least $670 million to IES in fiscal year
    2021. This funding level would restore IES to the fiscal year 2011 real
    dollar purchasing power level. IES is a semi-independent, nonpartisan
    branch of the U.S. Department of Education and is the research
    foundation for improving and evaluating teaching and learning. The four
    centers--the National Center for Education Statistics (NCES), National
    Center for Education Research (NCER), National Center for Special
    Education Research (NCSER) and National Center for Education Evaluation
    (NCEE)--work collaboratively to efficiently and comprehensively produce
    and disseminate rigorous research and high-quality data and statistics.
        Thank you for the opportunity to express support for the following
    fiscal year 2021 budget requests:
      --National Institutes of Health at least $44.7 billion
      --National Center for Health Statistics at least $189 million
      --Agency for Healthcare Research and Quality at least $471 million
      --Institute of Education Sciences at least $670 million
        These investments to strengthen behavioral and cognitive research
    are critical to the health and education of our citizens. Thank you for
    considering this request.
    FABBS Member Societies:
        Academy of Behavioral Medical Research, American Educational
    Research Association, American Psychological Association, American
    Psychosomatic Society, Association for Applied Psychophysiology and
    Biofeedback, Association for Behavior, Analysis, Behavior Genetics
    Association, Cognitive Neuroscience Society, Cognitive Science Society,
    International Society for Developmental Psychobiology, Massachusetts
    Neuropsychological Society, National Academy of Neuropsychology, The
    Psychonomic Society, Society for Behavioral Neuroendocrinology, Society
    for Computers in Psychology, Society for Judgement and Decision Making,
    Society for Mathematical Psychology, Society for Psychophysiological
    Research, Society for the Psychological Study of Social Issues, Society
    for Research in Child Development, Society for Research in
    Psychopathology, Society for the Scientific Study of Reading, Society
    for Text & Discourse, Society of Experimental Social Psychology,
    Society of Multivariate Experimental Psychology, Vision Sciences
    Society
    FABBS Affiliates:
        APA Division 1: The Society for General Psychology; APA Division 3:
    Experimental Psychology; APA Division 7: Developmental Psychology; APA
    Division 28: Psychopharmacology and Substance Abuse; Arizona State
    University; Binghamton University; Boston University; California State
    University, Fullerton; Carnegie Mellon University; Columbia University;
    Cornell University; Duke University; East Tennessee State University;
    Florida International University; Florida State University; George
    Mason University; George Washington University; Georgetown University;
    Georgia Institute of Technology; Harvard University; Indiana University
    Bloomington; Indiana University--Purdue University Indianapolis; Johns
    Hopkins University; Kent State University; Lehigh University;
    Massachusetts Institute of Technology; Michigan State University; New
    York University; North Carolina State University; Northeastern
    University; Northwestern University; The Ohio State University, Center
    for Cognitive and Brain Sciences; Pennsylvania State University;
    Princeton University; Purdue University; Rice University; Southern
    Methodist University; Stanford University; Syracuse University; Temple
    University; Texas A&M University; Tulane University; University of
    Arizona; University of California, Berkeley; University of California,
    Davis; University of California, Irvine; University of California, Los
    Angeles; University of California, Riverside; University of California,
    San Diego; University of Chicago; University of Colorado, Boulder;
    University of Delaware; University of Houston; University of Illinois
    at Urbana-Champaign; University of Iowa; University of Maryland,
    College Park; University of Massachusetts Amherst; University of
    Michigan; University of Minnesota; University of Minnesota, Institute
    of Child Development; University of North Carolina at Greensboro;
    University of Pennsylvania; University of Texas at Austin; University
    of Texas at Dallas; University of Washington; Vanderbilt University;
    Virginia Tech; Wake Forest University; Washington University in St.
    Louis; Yale University

        [This statement was submitted by Juliane Baron, Executive Director,
    Federation of Associations in Behavioral and Brain Sciences.]
                                     ______

                  Prepared Statement of Florida A&M University
        Chairmen Shelby and Blunt, Vice Chairman Leahy, Ranking Member
    Murray, and Members of the Labor, Health and Human Services, and
    Education, and Related Agencies Subcommittee, thank you for the
    opportunity to submit public testimony on the subcommittee's fiscal
    year 2021 appropriations bill. Florida A&M University (FAMU) supports
    maintaining or enhancing funding at the fiscal year 2020 enacted level
    for programs of interest to the University and our students, including
    the Department of Education's Historically Black Colleges and
    Universities (HBCU) programs, the HBCU Capital Financing Program, and
    the Federal Pell Grants program. FAMU also supports two programs at the
    Department of Health and Human Services--the National Institutes of
    Health's Research Centers in Minority Institutions and the Health
    Resources and Services Administration's Health Careers Opportunity
    Program. These Federal programs provide critical support to the
    University, our students as well as other institutions of higher
    education and the nation.
        Florida A&M University, based in the State capitol of Tallahassee,
    Florida, was founded in 1887 with only 15 students and two instructors.
    Today, FAMU has grown to nearly 10,000 students and we are proud to be
    the highest ranked among public Historically Black Colleges and
    Universities (HBCU) according to the U.S. News and World Report
    National Public Universities. Our University offers 56 bachelor's
    degrees, 29 master's degrees, 12 doctoral degrees and three
    professional degrees. We are a leading land-grant research institution
    with an increased focus on science, technology, research, engineering,
    agriculture, and mathematics. As noted by Diverse Issues, FAMU is a top
    producer of African American doctoral degrees in pharmacy and
    pharmaceutical sciences.
        Federal support is critical for institutions of higher education,
    particularly HBCUs, which are historically under-resourced. Robust
    Federal funding for programs that help to improve our institutions,
    broaden access for students, and improve student success is paramount.
    The Department of Education HBCU programs help us achieve these goals
    and the Federal Pell Grant program is an imperative resource for our
    students as the majority of our students are Pell-eligible.
    Furthermore, the Department of Health and Human Services' research and
    career development programs that support minority students also benefit
    FAMU, our students, and the nation. FAMU strongly supports funding for
    these vital Federal programs.
    Department of Education Historically Black Colleges and Universities
            Programs
        FAMU strongly supports robust funding for the Department of
    Education HBCU programs under the Higher Education, Aid for
    Institutional Development Programs account. These programs, authorized
    under Title III of the Higher Education Act, provide critical support
    to higher education institutions that enroll large proportions of
    minority and financially disadvantaged students. One of the primary
    missions of the Title III programs has been to support the nation's
    HBCUs. The Strengthening Historically Black Colleges and Universities
    program and the Historically Black Graduate Institutions program
    provide FAMU and other HBCUs with formula grants to help strengthen our
    academic, administrative, and fiscal capabilities.
        The President's fiscal year 2021 budget requests $324.8 million for
    the Strengthening Historically Black Colleges and Universities program.
    These formula grants provide critical support to HBCUs that help to
    improve our facilities, develop faculty, support academic programs,
    strengthen institutional management, enhance our development and
    recruitment activities, and provide tutoring and counseling services to
    students. In fiscal year 2019, FAMU received $7 million under the
    program.
        We also support the President's fiscal year 2021 budget request of
    $84 million for the Strengthening Historically Black Graduate
    Institutions, which funds five-year grants to provide for scholarships
    for disadvantaged students, academic and counseling services to improve
    student success, and supports infrastructure and facilities
    improvements. FAMU received $3.8 million under the current five-year
    grant period for this program.
        FAMU, like other HBCUs, has a critical need for funding to support
    equipment upgrades and purchases, construction and renovation of our
    facilities, and development of our academic programs. This includes a
    wide variety of projects to strengthen the University and its programs,
    such as expansion of our online education offerings to enhance pathways
    to degree attainment, upgrading our information technology
    infrastructure, construction of laboratories, research and education
    facilities, and upgrading our health sciences and technology equipment
    and facilities. Continued funding for these HBCU programs and other Aid
    for Institutional Development programs is essential to postsecondary
    institutions, like FAMU, that educate the nation's minority students.
    Department of Education Historically Black Colleges and Universities
            Capital Financing Program
        FAMU supports maintaining the fiscal year 2020 enacted level of
    $46.848 million for the Department of Education's HBCU Capital
    Financing Program, which provides low-cost capital to finance
    improvements to the infrastructure of the nation's HBCUs. Specifically,
    the program provides accredited HBCUs with access to capital financing
    or refinancing for the repair, renovation, and construction of
    classrooms, libraries, laboratories, dormitories, instructional
    equipment, and research instrumentation.
        FAMU, like other HBCUs, has a critical need to upgrade and
    rehabilitate our aging facilities. This program makes capital available
    for HBCUs to improve our academic facilities, which will enhance the
    learning experience for our students. The $46.484 million requested for
    fiscal year 2021 will be used to pay the loan subsidy costs in
    guaranteed loan authority under the program. The President's fiscal
    year 2021 budget only proposes $40.848 million for the program. FAMU
    urges to the Subcommittee to reject the President's proposal and
    provide the current level of funding for fiscal year 2021, which will
    allow HBCUs to continue to refinance previous capital project loans,
    renovate existing facilities, or build new facilities to improve our
    institutions.
    Department of Education Pell Grant Program
        FAMU supports robust funding for the Pell Grant program under the
    Department of Education's Student Financial Assistance account. The
    Federal Pell Grant program, authorized by Title IV of the Higher
    Education Act, is the largest source of Federal grant aid supporting
    college students. The Pell Grant Program provides need-based grants to
    low-income undergraduate students to promote access to postsecondary
    education.
        For 2017-2018, there were 5,543 Pell Grant recipients attending
    FAMU, amounting to $27.7 million in Pell Grant awards. More than half
    of our enrolled students rely on Pell grants to attend our institution.
    Given the ongoing coronavirus crisis, which will have devastating
    impacts on the economy for the foreseeable future, we expect that our
    current and prospective students will be dependent on financial
    assistance, including Pell Grants, in order to continue pursuing their
    postsecondary education goals.
        The President's fiscal year 2021 budget requests level funding of
    $22.475 billion for Discretionary Pell Grants. For fiscal year 2020,
    Congress increased the maximum award by $150, to $6,345 in academic
    year 2020-2021. FAMU would encourage Congress to double the total
    maximum Pell grant award in fiscal year 2021 to provide critical
    support for economically disadvantaged college students during this
    particularly challenging time.
    National Institutes of Health Research Centers in Minority Institutions
        FAMU supports funding at the fiscal year 2020 enacted level of $75
    million for the NIH National Institute on Minority Health and Health
    Disparities (NIMHD), Research Centers in Minority Institutions (RCMI)
    Program. The RCMI Program, established in 1985, supports critical
    infrastructure development and scientific discovery in historically
    minority graduate and health professional schools. The program serves
    the dual purpose of bringing more racial and ethnic minority scientists
    into mainstream research and promoting minority health research because
    many of the investigators at RCMI institutions study diseases that
    disproportionately affect minority populations.
        Over the five-year period of 2013-2018, FAMU was awarded $13.7
    million under the RCMI Program to support drug discovery and research
    aimed at better understanding of the makeup and risks associated with
    various degenerative diseases and their treatment. In the area of drug
    discovery, the grant aids in developing new drugs that can be used for
    the treatment of neurodegenerative diseases such as Parkinson's;
    stroke; cancer (breast, prostate and lung); and emerging infectious
    diseases to uncover targets for therapy and translational research.
        Since 1985, FAMU has received RCMI support in excess of $54
    million, which has helped to fund construction for the research wing of
    the College of Pharmacy and make laboratory improvements. It has
    provided critical infrastructure to enable the College to achieve
    national prominence and become a competitive biomedical research center
    nationally. Since the inception of the RCMI Program at FAMU, the
    College has implemented four doctoral tracks in pharmaceutical
    sciences. With concentrations in pharmacology/toxicology, medicinal
    chemistry, pharmaceutics and environmental toxicology, our College of
    Pharmacy has graduated more than 60 percent of the African American
    doctoral recipients in the pharmaceutical sciences nationally.
        The President's fiscal year 2021 budget cuts funding for the RCMI
    Program to $68.25 million. The RCMI Program develops and strengthens
    the research infrastructure necessary to conduct state-of-the-art
    biomedical research and foster the next generation of researchers from
    underrepresented populations. FAMU requests $75 million, the fiscal
    year 2020 enacted level, for this program to allow NIH to continue
    supporting this important work.
    Department of Health and Human Services, Health Resources and Services
            Administration (HRSA), Health Careers Opportunity Program
        FAMU supports the fiscal year 2020 enacted level of $15 million for
    HRSA's Health Careers Opportunity Program (HCOP). First authorized in
    1972, the HCOP competitive grant program aims to provide individuals
    from disadvantaged backgrounds an opportunity to develop the skills
    needed to successfully compete for, enter, and graduate from health or
    allied health professions schools. HCOP focuses on three key milestones
    of education: high school completion; acceptance, retention and
    graduation from college; and acceptance, retention and completion of a
    health professions degree program. The ultimate goal of the HCOP
    program is to diversify the health professions workforce by narrowing
    the educational achievement gaps between individuals from higher-income
    and lower-income households.
        The Health Careers Opportunity Program (HCOP) High School Summer
    Institute, conducted on FAMU's campus, is designed for high school
    students interested in pursuing a career in a health profession. The
    four-week program provides a wide-range of educational and social
    experiences for rising 10th, 11th and 12th grade students. The entire
    experience is designed to enhance participants' academic abilities,
    social skills, and other competencies to increase their competitiveness
    for admission to a post-secondary health professions program.
        The President's fiscal year 2021 budget eliminates funding for
    HRSA's Health Workforce, Training for Diversity Programs, including the
    HCOP. Continued funding is critical for these programs that help to
    increase the supply of underrepresented minorities in health
    professions.
        We urge the Subcommittee to support continued and/or enhanced
    funding at the fiscal year 2020 level for these critical education
    programs at the Departments of Education and Health and Human Services.
    We thank you for your continued support of Federal postsecondary
    initiatives that not only directly benefit the University and our
    students, but the region and the nation as well. Thank you for your
    consideration.

        [This statement was submitted by Larry Robinson, Ph.D., President,
    Florida A&M University.]
                                     ______

        Prepared Statement of the Fred Hutchinson Cancer Research Center
        The Fred Hutchinson Cancer Research Center (Fred Hutch) is grateful
    to Congress for providing robust, reliable funding for the National
    Institutes of Health (NIH), a key national priority. The nation's
    investment in NIH research pays a lifetime of dividends in better
    health and improved quality of life for all Americans. In fiscal year
    2021, Fred Hutch recommends at least $44.7 billion for the NIH. This
    funding level would continue the momentum of recent increases by
    enabling meaningful base budget growth above inflation, while ensuring
    that the NIH Innovation Account supplements the agency's base budget,
    as intended, through dedicated funding for specific programs.
        Through the strong, bipartisan action of this Subcommittee's
    leaders, Chairman Roy Blunt and Ranking Member Patty Murray, Congress
    is helping the agency regain lost ground after years of effectively
    flat budgets. Once more, in the fiscal year 2020 minibus bill, the
    Subcommittee's leadership ensured continued progress by providing a
    substantial increase to all NIH institutes and centers.
        The Federal investment in biomedical research has yielded a
    significant number of scientific advances. These advances create
    economic opportunity as new companies emerge to translate novel
    research into cures and therapeutics to improve health outcomes for
    patients. NIH funding enables Fred Hutch to redefine what is possible
    across the full spectrum of biomedical research. Fred Hutch is
    committed to working with Congress and the Administration to further
    bipartisan support for increasing Federal investment in biomedical
    science and ensuring NIH remains a top priority in fiscal year 2021 and
    beyond.
                                about fred hutch
        Fred Hutchinson Cancer Research Center, founded in 1975, is
    designated by the National Cancer Institute (NCI) as a Comprehensive
    Cancer Center with the mission to eliminate cancer and related diseases
    as causes of human suffering and death. Fred Hutch's interdisciplinary
    team of world-renowned scientists and humanitarians work together to
    prevent, diagnose, and treat cancer, HIV/AIDS, and other diseases. Our
    Nobel Prize winning discoveries began in the 1970s with Dr. E. Donnall
    Thomas' work in bone marrow transplantation, providing the first
    definitive and reproducible example of the power of the human immune
    system's ability to cure cancer.
        Fred Hutch scientists remain at the vanguard, from the development
    of innovative treatments and cures for cancer and HIV, to analysis and
    modeling of emerging pandemics like the novel coronavirus, COVID-19. In
    addition to paving the way for groundbreaking discoveries in science,
    Fred Hutch invests in the next generation of researchers through
    initiatives that embrace diversity and inclusion in team-science,
    promote women in the scientific enterprise, and empower early career
    researchers. Below are some examples of how NIH funding drives Fred
    Hutch innovation and helps shape future generations of scientists.
      --Advancing Breakthrough Cures and Discoveries. Fred Hutch is leading
            the way in developing cures for a wide variety of cancers and
            other diseases. Recent examples include:
        --Harnessing the Immune System to Kill Cancer. Fred Hutch
                researchers continue to lead new breakthroughs in
                immunotherapy, including discoveries leveraging
                nanotechnologies that attach to and shrink tumors, and
                using a failed Alzheimer's drug to help boost CAR-T cell
                therapy for cancer patients.
        --Exploring a Clever Way to Make an AIDS Vaccine. Fred Hutch
                researchers have developed a new strategy to counter the
                frustrating ability of HIV to sidestep vaccines designed to
                block it by luring out extremely rare immune cells in the
                human body with genetic bait.
        --Boosting Cancer Clinical Trial Participation. Fred Hutch
                researchers offer new solutions to low clinical trial
                participation, such as loosening strict comorbidity
                criteria in order to open trials to thousands of previously
                exempt patients.
        --Tracking the COVID-19 pandemic. Genomic analysis and modeling of
                COVID-19 by Fred Hutch researchers has helped officials
                from a local to international level anticipate viral spread
                and provide scientific guidance as policymakers consider
                appropriate public health mitigation measures. Researchers
                are also contributing expertise to studies for the first-
                in-human vaccine trials and pursuing assays for serologic
                testing.
      --Embracing Diversity and Inclusion in a Team-Science World. Fred
            Hutch was the first U.S. Cancer Center to commit to the CEO
            Action for Diversity & Inclusion pledge, and its Office of
            Diversity, Equity and Inclusion focuses on integrating these
            efforts as a core value and practice that will catalyze the
            mission of eliminating cancer and related disease.
      --Promoting Women in Science. Fred Hutch is a leader in prioritizing
            gender parity among faculty members and promoting women in
            science. Women scientists lead four of the five scientific
            divisions and hold 12 of 25 endowed faculty chairs at the
            center.
      --Empowering Early Career Researchers. Fred Hutch is dedicated to
            empowering the next generation of researchers. The Center
            invests more than $2 million a year in a pipeline of programs
            to mentor young faculty and encourage trainees from
            underrepresented backgrounds, from high school to college and
            graduate school to postdoctoral fellowships. These programs
            have a broad reach, provide real world opportunities for young
            scientists, and improves the overall quality of science.
               the value of federally-funded biomedical research
        The Federal Government has an irreplaceable role in supporting
    biomedical and basic science research. No other public, corporate, or
    charitable entity is willing or able to provide broad and sustained
    funding for cutting-edge research necessary to yield new innovations
    and technologies of the future. The partnership between NIH and
    America's scientists and research institutions is a unique and highly-
    productive relationship. By leveraging the full strength of our
    nation's research enterprise to foster discovery, improve our
    understanding of the underlying cause of disease, and develop the next
    generation of biomedical innovations--and innovators--we will deliver
    better treatments and cures to patients.
        As an independent research institute with a sole mission to pursue
    lifesaving discoveries, Fred Hutch depends on NIH funding to focus on
    basic, translational, clinical, public health, and infectious disease
    research, and to respond quickly to the research needs of the country.
    In addition to supporting robust funding, Fred Hutch opposes
    provisions--such as directives to reduce the salary limit for
    extramural researchers--which would harm the integrity of the research
    enterprise and disproportionately affect independent research
    institutes. Policies to cut salary support hinder Fred Hutch's research
    mission and ability to recruit and retain the talented researchers who
    make U.S. institutions global leaders in advancing life-saving
    biomedical sciences.
        The NIH initiatives focusing on career development and recruitment
    of a diverse scientific workforce are critical to innovation in
    biomedical research and public health. Robust increases to the NIH
    budget are critical to fostering the next generation of scientists, as
    training funds work to attract the brightest minds to pursue a career
    in research. Fred Hutch is committed to training the diverse group of
    rising stars in science and supports NIH efforts like the Next
    Generation Researchers Initiative to address challenges faced by
    investigators launching their careers.
                                   conclusion
        Fred Hutch thanks the Subcommittee for its important work dedicated
    to ensuring the health of the nation and for its strong support for NIH
    funding in fiscal year 2021. We appreciate the opportunity to urge the
    Subcommittee to provide at least $44.7 billion in fiscal year 2021 for
    NIH, which is the next step toward a multi-year increase in our
    nation's investment in biomedical research. Advances in bioscience,
    technology, and data science have brought us to an inflection point.
    This is not a time to pull back. Given the abundance of scientific
    opportunity, this recommendation represents a minimum investment to
    sustain progress that only would be amplified through an even more
    robust commitment.
                                     ______

           Prepared Statement of Friends of the Health Resources and
                       Services Administration Coalition
        The Friends of HRSA coalition is a nonpartisan coalition of nearly
    170 national organizations representing tens of millions of public
    health and healthcare professionals, academicians and consumers
    invested in the Health Resources and Services Administration's mission
    to improve health outcomes and achieve health equity. We are pleased to
    submit our request of at least $8.8 billion for the Health Resources
    and Services Administration in fiscal year 2021. We strongly urge you
    to reject the many proposed cuts to important HRSA programs contained
    in the president's fiscal year 2021 budget proposal. These requests do
    not reflect any additional resources that may be needed to address the
    immediate and ongoing efforts to combat the COVID-19 pandemic. HRSA
    programs are especially critical as the U.S. grapples with the COVID-19
    pandemic. Adequate funding for programs that promote public health in
    underserved communities, support health centers and bolster America's
    public health workforce will be critical in facing the short-term and
    long-term health impacts of COVID-19.
        HRSA's 90-plus programs and more than 3,000 grantees support tens
    of millions of geographically isolated, economically or medically
    vulnerable people, in every state and U.S. territory, to achieve
    improved health outcomes by increasing access to quality healthcare and
    services; fostering a healthcare workforce able to address current and
    emerging needs; enhance population health and address health
    disparities through community partnerships; and promote transparency
    and accountability within the healthcare system. The agency is a
    national leader in improving the health of Americans by addressing the
    supply, distribution and diversity of health professionals and
    supporting training in contemporary practices, and providing high-
    quality health services to populations who may otherwise not have
    access to healthcare.
        HRSA programs work in coordination with each other to maximize
    resources and leverage efficiencies. For example, Area Health Education
    Centers, a health professions training program, was originally
    authorized at the same time as the National Health Service Corps to
    increase the number of primary care providers at health centers and
    other direct providers of healthcare services for underserved areas and
    populations. AHECs play an integral role to recruit providers into
    primary healthcareers, diversify the workforce and develop a passion
    for service to the underserved among future providers.
        HRSA's programs also work in collaboration across the Federal
    Government to enhance health outcomes. For example, HRSA's HIV/AIDS
    Bureau partners with the Office of the Assistant Secretary for Health,
    the Centers for Disease Control and Preventions, the Substance Abuse
    and Mental Health Services Administration, the Centers for Medicare and
    Medicaid Services, the Indian Health Services, the National Institutes
    of Health, the Agency for Healthcare Research and Quality, the
    Department of House and Urban Development, the Department of Veterans
    Affairs and the Department of Justice to ensure an effective use of
    resources, and a coordinated and focused public health response to the
    HIV epidemic. This Federal response has contributed to the number of
    annual HIV infections dropping 5.6 percent between 2010 and 2016, with
    HRSA's Ryan White HIV/AIDS Program serving as the foundation for
    delivering healthcare and support services to reach the public health
    goal of ending the HIV epidemic. Despite this success, an estimated 1.1
    million people in the U.S. are living with HIV today, and nearly 38,000
    become newly infected every year--1 in 7 of whom are unaware of their
    infection. HRSA programs will play an integral role in achieving the
    public health goal of ending the HIV epidemic.
        HRSA grantees also play an active role in addressing emerging
    health challenges. For example, HRSA's grantees provide outreach,
    education, prevention, screening and treatment services for populations
    affected by health emergencies such as the opioid epidemic. However,
    much of this work required additional funding to increase capacity in
    health centers, support National Health Service Corps providers to
    deliver relevant care and expand rural health services. Strong,
    sustained funding would allow HRSA to quickly and effectively respond
    to emerging and unanticipated future health needs across the U.S.,
    while continuing to address persistent health challenges.
        HRSA programs and grantees are providing innovative and successful
    solutions to some of the nation's greatest healthcare challenges
    including the rise in maternal mortality, the severe shortage of health
    professionals, the high cost of healthcare, and behavioral health
    issues related to substance use disorder--including opioid misuse. We
    are grateful for the increases provided for HRSA programs in the fiscal
    year 2020, however HRSA's discretionary budget authority remains over
    20 percent below the fiscal year 2010 level (adjusted for inflation).
    We recommend Congress build upon the important increases they provided
    for HRSA programs in fiscal year 2020 and provide at least $8.8 billion
    for HRSA's total discretionary budget authority in fiscal year 2021.
    Additional funding will allow HRSA to pave the way for new achievements
    and continue supporting critical HRSA programs, including:
      --Primary care programs support over 11,000 health center sites in
            every state and territory, improving access to preventive and
            primary care for more than 28 million people in geographic
            areas with few healthcare providers. Health centers coordinate
            a full spectrum of health services including medical, dental,
            vision, behavioral and social services in the nation's most
            underserved communities. Health centers reach 1 in 3 people
            living at or below the Federal poverty line; 1 in 5 rural
            residents; 1 in 5 uninsured persons; and 1 in 6 Medicaid
            beneficiaries.
      --Health workforce programs support the education, training,
            scholarship and loan repayment of primary care physicians,
            nurses, oral health professionals, optometrists, physician
            assistants, nurse practitioners, clinical nurse specialists,
            public health personnel, mental and behavioral health
            professionals, pharmacists and other allied health providers.
            With an emphasis on primary care and training in
            interdisciplinary, community-based settings, these are the only
            Federal programs focused on filling the gaps in the supply of
            health professionals, as well as improving the geographic
            distribution and diversity of the workforce.
      --Maternal and child health programs, including the Title V Maternal
            and Child Health Block Grant, Healthy Start and others, support
            initiatives designed to promote optimal health, reduce
            disparities, combat infant and maternal mortality, prevent
            chronic conditions and improve access to quality healthcare for
            mothers and babies. MCH programs help assure that nearly all
            babies born in the U.S. are screened for a range of serious
            genetic or metabolic diseases, and that coordinated long-term
            follow-up is available for babies with a positive screen. They
            also help improve early identification and coordination of care
            for children with sensory disorders, autism and other
            developmental disabilities. The MCH Block Grants funded 59
            states and jurisdictions to provide healthcare and public
            health services for an estimated 76 million people, reaching 91
            percent of pregnant women, 99 percent of infants, and 54%55
            percent of children nationwide.
      --HIV/AIDS programs provide the largest source of Federal
            discretionary funding assistance to states and communities most
            severely affected by HIV/AIDS. The Ryan White HIV/AIDS Program
            delivers comprehensive care, prescription drug assistance, and
            support services to more than 550,000 people impacted by HIV/
            AIDS. HRSA's Ryan White HIV/AIDS Program effectively engages
            clients in comprehensive care and treatment, including
            increasing access to HIV medication, which has resulted in 87
            percent of clients achieving viral suppression, compared to
            just 59 percent of all people living with HIV nationwide.
            Additionally, the program provides education and training for
            health professionals treating people with HIV/AIDS, and works
            toward addressing the disproportionate impact of HIV/AIDS on
            racial and ethnic minorities.
      --Title X ensures access to a broad range of reproductive, sexual and
            related preventive health services for nearly 4 million women,
            men and adolescents, with priority given to low-income
            individuals. Services include patient education and counseling
            for family planning; provision of contraceptive methods;
            cervical and breast cancer screenings; sexually transmitted
            disease prevention education, testing and referral; and
            pregnancy diagnosis. This program helps improve maternal and
            child health outcomes and promotes healthy families.
      --Rural health programs improve access to care for people living in
            rural areas. The Office of Rural Health Policy serves as the
            nation's primary advisor on rural policy issues, conducts and
            oversees research on rural health issues and administers grants
            to support healthcare delivery in rural communities. Rural
            health programs are designed to support community-based disease
            prevention and health promotion projects, help rural hospitals
            and clinics implement new technologies and strategies and build
            health system capacity in rural and frontier areas.
      --Special programs include the Organ Procurement and Transplantation
            Network, the National Marrow Donor Program, the C.W. Bill Young
            Cell Transplantation Program and National Cord Blood Inventory.
            These programs maintain and facilitate organ marrow and cord
            blood donation, transplantation and research, along with
            efforts to promote awareness and increase organ donation rates.
            Special programs also include the Poison Control Program, the
            nation's primary defense against injury and death from
            poisoning for over 50 years. Poison control centers contribute
            to significantly decreasing a patient's length of stay in a
            hospital and save the healthcare system over $1.8 billion per
            year, including $662.8 million saved by the Federal Government
            each year in medical and productivity costs.
        Our recommendation is based on the need to continue improving the
    health of Americans and to provide HRSA with the resources needed to
    pave the way for new achievements. We urge you to consider HRSA's
    central role in strengthening the nation's health and advise you to
    adopt our fiscal year 2021 request of at least $8.8 billion for HRSA's
    discretionary budget authority. Thank you for the opportunity to submit
    our recommendation to the subcommittee.

        [This statement was submitted by Jordan Wolfe, Manager of
    Government
    Relations, American Public Health Association.]
                                     ______

        Prepared Statement of the Friends of the Institute of Education
                                    Sciences
        Chairman Blunt, Ranking Member Murray, and Members of the
    Subcommittee; thank you for the opportunity to submit written testimony
    on behalf of the Friends of IES, a consortium of scientific and
    professional societies, research universities, and independent research
    organizations interested in supporting the mission of IES and the use
    of research and statistics. As Congress continues to address the
    current public health and economic needs related to COVID-19, there are
    ongoing education research programs and statistical infrastructure
    needs that would be appropriately addressed through the regular
    appropriations process. We recommend $670 million for the Institute of
    Education Sciences (IES) in the fiscal year 2021 Labor, Health and
    Human Services, and Education Appropriations bill.
        This is a critical time to invest in education research, data, and
    statistics to produce essential knowledge about teaching and learning
    across all levels of education as the COVID-19 pandemic has impacted
    students, parents, teachers, and school leaders in unprecedented ways.
    IES has proactively worked to provide future data and evidence-based
    resources, including the addition of questions to gauge the impact of
    COVID-19 on National Center for Education Statistics longitudinal
    surveys, a meta-analysis study being conducted to highlight effective
    distance learning practices, and webinars and guidance from the
    Regional Educational Laboratories.
        IES is the independent and nonpartisan statistics, research, and
    evaluation arm of the U.S. Department of Education charged with
    supporting and disseminating rigorous scientific evidence on which to
    ground education policy and practice. As such, it serves as the
    critical Federal source for funding groundbreaking research in myriad
    aspects of teaching and learning, as well as rigorous analysis of
    educational programs and initiatives.
        Its four centers--the National Center for Education Statistics
    (NCES), National Center for Education Research (NCER), National Center
    for Special Education Research (NCSER) and National Center for
    Education Evaluation (NCEE)-work collaboratively to efficiently and
    comprehensively deliver rigorous research and high-quality data and
    statistics to educators, parents, and policymakers. As one example of
    the need for more ongoing research, school districts are implementing
    school improvement plans for their lowest performing schools under the
    new framework provided under the Every Student Succeeds Act (ESSA). The
    investment in IES for evidence-based resources and strategies helps
    school districts make smart decisions about what plan elements will
    positively impact student and school performance.
        Our member organizations rely on IES to support vital research that
    addresses many of the most important issues in our nation's schools--
    from literacy and numeracy at the elementary level to the integration
    of technology in teaching and learning, and from examining ways to
    enhance career and technical education to closing achievement gaps at
    every level of our educational systems. Yet, only one of every ten
    grant proposals receives funding support, limiting the ability of IES
    to support emerging lines of inquiry and tackle pressing questions
    about education, such as what can be done support student learning,
    bolster the impact of technology in the classroom, address challenges
    facing rural districts, and improve literacy for adult learners.
    Additional funding for IES would also support additional capacity for
    communicating findings on areas of interest to teachers, including
    research-based reading instruction, effective technology use, and
    student engagement.
        The National Center for Education Statistics (NCES) is the primary
    Federal entity dedicated to collecting data related to education and is
    the only principal statistical agency dedicated to this mission. NCES
    compiles and disseminates important, scientifically valid data on the
    condition of education that is essential to the research being
    conducted across the nation. NCES also provides the funding support and
    infrastructure for the Statewide Longitudinal Data Systems (SLDS),
    providing critical investment for states to link K-12, postsecondary,
    and workforce systems to gain a better understanding of education and
    workforce outcomes. IES is also promoting the research use of SLDS to
    measure the effects of interventions on long-term student outcomes.
    Sufficient funding for NCES would allow for more timely collection and
    dissemination of data on key indicators, including teacher salaries,
    the amount of loans taken out by undergraduate students, and the
    participation of students in English language learner programs.
        In addition to the research supported by the National Center for
    Education Research, the Regional Educational Laboratories (RELs)
    conduct applied research that is directly relevant to state and
    district administrators, principals and teachers. RELs also ensure that
    research is shared widely through its deep dissemination networks.
    Recent work across the REL network has focused on ways to address the
    teacher shortage; how to increase family involvement in developing
    foundational reading skills; and the relationship between teacher
    qualifications and student performance in Algebra I. This work is all
    driven by the state education agencies and other stakeholders in the
    regions. With additional resources the RELs could produce additional
    research-based materials to improve teaching and learning with
    consideration given to regional context.
        The National Center for Special Education Research (NCSER) is the
    only Federal agency specifically designated to develop and provide
    evaluations for programs for students with disabilities Research funded
    by NCSER has resulted in programs that support youth with high
    functioning autism experiencing high levels of anxiety, individuals
    with Down syndrome learning to read, and students with learning
    disabilities studying to master math word problems. NCSER also provides
    special educators and administrators research-based resources that
    support the provision of a free appropriate public education and
    interventions to foster self-determination in students with
    disabilities as they transition into adulthood. With a budget that is
    only two-thirds of the amount appropriated in 2005 and has remained
    relatively flat since 2014, NCSER has been unable to fund critical
    topics such as special education teacher quality and shortages, high
    leverage practices, and potential linkages between students with
    disabilities and enrollment in developmental education classes in
    higher education.
        To this end, we urge the Committee to support funding IES at $670
    million in fiscal year 2021. A commitment at this level will enable IES
    to more fully support research that addresses the challenges of
    preparing young Americans to succeed in the knowledge-based economy
    that is not only upon us now, but also the key to future American
    prosperity.

        [This statement was submitted by Felice J. Levine, Chair, Friends
    of the Institute of Education Sciences.]
                                     ______

                 Prepared Statement of the Friends of National
                          Center for Health Statistics
        The Friends of NCHS is a coalition of public health associations,
    patient organizations, scientific societies, and research institutions
    who rely on the information produced by the National Center for Health
    Statistics (NCHS) within the Centers for Disease Control and Prevention
    (CDC). In order to support NCHS's continued work to monitor the health
    of the American people and to allow the agency to make much-needed
    investments in the next generation of its surveys and products, the
    Friends of NCHS recommend an appropriation of at least $189 million for
    the agency in fiscal year 2021. Our recommendation reflects an increase
    to NCHS's base budget of $14.6 million from its fiscal year 2020
    appropriation, as well as the formalization of an ongoing $14 million
    transfer from Surveillance, Epidemiology, and Informatics as proposed
    in the President's fiscal year 2021 Budget Request. We urge the
    Subcommittee to reject the Administration's proposed $5.4 million cut
    to the agency, which would have a devastating impact on NCHS's ability
    to continue to provide timely, unbiased, and accurate data on
    Americans' health. It is important to note that the enclosed request is
    for NCHS's baseline budget for fiscal year 2021 and, without
    supplemental funding, will not be sufficient in making the agency and
    its programs whole once the pandemic subsides and Federal agencies
    return to regular activity.
        The coalition greatly appreciates the Subcommittee's longstanding
    support of NCHS and the data it produces on all aspects of our
    healthcare system. We also thank the Subcommittee for the prominent
    inclusion of NCHS within the $50 million Public Health Data
    Surveillance/IT Systems Modernization initiative in the fiscal year
    2021 appropriations agreement. As the CDC's leadership determines how
    to allocate this new funding, we ask that the Subcommittee exercise its
    oversight authority over this initiative to ensure that NCHS receives
    sufficient funding to invest in innovation as directed by the
    Explanatory Statement.
        Investing in the agency now will allow NCHS to put its expertise to
    transformative use to create a true twenty-first century statistical
    agency and reaffirm NCHS's status as the world's gold-standard producer
    of health statistics. With additional funding, NCHS could capitalize on
    advances in survey methodology, big data, and computing by:
      --Building platforms that better integrate electronic health records
            (EHRs) into NCHS's data production by standardizing data from
            the major EHR vendors.
      --Determining how best to achieve efficiencies among its hallmark
            population health surveys (the National Health Interview Survey
            and the National Health and Nutrition Examination Survey),
            making them less costly to taxpayers and less burdensome on
            participants.
      --Supporting states as they modernize their vital records
            registration systems by ensuring they have the flexibility to
            collect information on new and rapidly-changing causes of
            death, such as emerging infectious diseases, deaths due to
            natural disasters, and drug overdoses, as well as collecting
            geocoded information to better measure the spread of disease in
            real time.
      --Linking and integrating data reporting systems to receive and
            process information more efficiently, reduce burden on local
            data providers, and analyze and release statistics faster.
      --Upgrading its computing technology and capacity to protect the
            confidentiality and security of NCHS's data while improving
            speed and quality.
      --Expanding its use of machine learning and artificial intelligence
            to spot trends in Americans' health earlier. These technologies
            could allow NCHS to automate the coding of deaths of high
            public health interest such as drug overdose deaths, emerging
            infectious diseases, deaths due to natural disasters, and
            infant and maternal deaths, which are currently coded manually.
      --Improving external users' access to public and restricted NCHS data
            by enhancing data visualization and usability and piloting the
            use of remote access to restricted NCHS data files.
        Even under a tightly constrained budget, NCHS has pioneered
    innovative new techniques to get the most value out of every taxpayer
    dollar. Over the past several years, NCHS has closed the gap between
    data collection and publication for leading causes of death, resumed
    official estimates of maternal mortality after over a decade,
    implemented literal text analysis to identify the drugs most frequently
    involved in overdose deaths, and executed a redesign of the Health
    Interview Survey to reduce the burden on respondents. Yet, these
    achievements only serve to highlight how far additional investment in
    NCHS would go towards helping the agency rise to the challenges it
    faces.
        We thank you again for your continued support of NCHS's essential
    data and statistics and encourage to you make sustained investments in
    how we measure our nation's health. We urge you to support a funding
    level of at least $189 million for NCHS in fiscal year 2021. Please do
    not hesitate to contact me should you require additional information.

        [This statement was submitted by Julia Milton, Chair, Friends of
    NCHS, Director of Public Affairs, Consortium of Social Science
    Associations.]
                                     ______

               Prepared Statement of the Friends of the National
                            Institute on Drug Abuse
        Thank you for the opportunity to submit testimony in support of the
    National Institute on Drug Abuse (NIDA). The Friends of the National
    Institute on Drug Abuse is a coalition working with about 150 scholarly
    organizations with a total membership of at least 2 million scholars,
    clinicians and educators who are committed to eliminating drug abuse in
    society. We coordinate the opinions of the participating organizations,
    who also actively participate on their own to provide important
    information to policy makers to make decisions that will lead to the
    elimination of this disease which now is killing so many of our
    citizens. For example, former research which led to the creation of
    drugs such as naloxone and buprenorphine has provided important
    mechanisms which have prevented the death rate from being even much
    higher. We need more research in all areas of basic and clinical
    science to make additional advances.
        In the fiscal year 2021 Labor-HHS Appropriations bill, we request
    that the subcommittee provide at least $3 billion above the fiscal year
    2020 level for the National Institutes of Health (NIH), and within that
    amount a proportionate increase for the National Institute on Drug
    Abuse (NIDA) using the Institute's conferenced level of $1,462,016,000
    as NIDA's base budget for Fiscal 2021. In addition, within the NIH
    total, we request at least $500 million for targeted research on opioid
    misuse and addiction, development of opioid alternatives, pain
    management, and addiction treatment, of which at least $250 million is
    allocated to NIDA and included in its base budget for Fiscal 2021. We
    also respectfully request the inclusion of the following NIDA specific
    report language.
        Opioid Initiative. The Committee continues to be extremely
    concerned about the epidemic of prescription opioids, heroin, and
    illicit synthetic opioid use, addiction and overdose in the U.S.
    Approximately 174 people die each day in this country from drug
    overdose (over 100 of those are directly from opioids), making it one
    of the most common causes of non-disease-related deaths for adolescents
    and young adults. This crisis has been exacerbated by the availability
    of illicit fentanyl and its analogs in many communities. The Committee
    appreciates the important role that research plays in the various
    Federal initiatives aimed at this crisis. To combat this crisis, the
    bill includes at least $250,000,000 for research related to preventing
    and treating opioid misuse and addiction. With additional funding for
    NIDA targeted at addressing the opioid epidemic, the Institute's opioid
    specific allocation should be targeted for the following areas:
    development of safe and effective medications and new formulations and
    combinations to treat opioid use disorders and to prevent and reverse
    overdose; conduct demonstration studies to create a comprehensive care
    model in communities nationwide to prevent opioid misuse, expand
    treatment capacity, enhance access to overdose reversal medications,
    and enhance prescriber practice; test interventions in justice system
    settings to expand the uptake of medication assisted treatment and
    methods to scale up these interventions for population-based impact;
    and develop evidence-based strategies to integrate screening and
    treatment for opioid use disorders in emergency department and primary
    care settings.
        Methamphetamines and Other Stimulants. The Committee is concerned
    that, according to the latest data released by the Centers for Disease
    Control and Prevention, the number of deaths from the drug categories
    that include methamphetamine and cocaine more than doubled from 2015-
    2018, leading some to refer to stimulant overdoses as the ``fourth
    wave'' of the current drug addiction crisis in America following the
    rise of opioid-related deaths involving prescription opioids, heroin,
    and fentanyl-related substances. The Secretary has also stated that
    methamphetamine is highly addictive and there are no FDA-approved
    treatments for methamphetamine and other stimulant use. The Committee
    continues to support NIDA's efforts to address the opioid crisis, has
    provided continued funding for the HEAL Initiative, and supports NIDA's
    efforts to combat the growing problem of methamphetamine and other
    stimulant use and related deaths.
        Barriers to Research. The Committee is concerned that restrictions
    associated with Schedule I of the Controlled Substance Act effectively
    limit the amount and type of research that can be conducted on certain
    Schedule I drugs, especially opioids, marijuana or its component
    chemicals and new synthetic drugs and analogs. At a time when we need
    as much information as possible about these drugs to find antidotes for
    their harmful effects, we should be lowering regulatory and other
    barriers to conducting this research. The Committee directs NIDA to
    provide a short report on the barriers to research that result from the
    classification of drugs and compounds as Schedule I substances
    including the challenges researchers face as a result of limited access
    sources of marijuana including dispensary products.
        Raising Awareness and Engaging the Medical Community in Drug Abuse
    and Addiction Prevention and Treatment. Education is a critical
    component of any effort to curb drug use and addiction, and it must
    target every segment of society, including healthcare providers
    (doctors, nurses, dentists, and pharmacists), patients, and families.
    Medical professionals must be in the forefront of efforts to curb the
    opioid crisis. The Committee continues to be pleased with the NIDAMED
    initiative, targeting physicians-in-training, including medical
    students and resident physicians in primary care specialties (e.g.,
    internal medicine, family practice, and pediatrics). NIDA should
    continue its efforts in this space, providing physicians and other
    medical professionals with the tools and skills needed to incorporate
    substance use and misuse screening and treatment into their clinical
    practices.
        Marijuana Research. The Committee is concerned that marijuana
    public policies in the states (medical marijuana, recreational use,
    etc.) are being changed without the benefit of scientific research to
    help guide those decisions. NIDA is encouraged to continue supporting a
    full range of research on the health effects of marijuana and its
    components, including research to understand how marijuana policies
    affect public health.
        Electronic Cigarettes. The Committee understands that electronic
    cigarettes (e-cigarettes) and other vaporizing equipment are
    increasingly popular among adolescents, and requests that NIDA fund
    research on the use and consequences of these devices. The Committee
    also supports the Population Assessment of Tobacco and Health (PATH)
    Study, a collaboration between NIDA and the U.S. Food and Drug
    Administration (FDA) Center for Tobacco Products to help scientists
    learn how and why people start using tobacco products, quit using them,
    and start using them again after they have quit, as well as how
    different tobacco products affect health outcomes over time.
        In addition, we request the following report language within the
    Office of the Director account:
        The HEALthy Brain and Child Development (BCD) Study. The Committee
    recognizes and supports the NIH HEALthy Brain and Child Development
    Study, which will establish a large cohort of pregnant women from
    regions of the country significantly affected by the opioid crisis and
    follow them and their children for at least 10 years. This knowledge
    will be critical to help predict and prevent some of the known impacts
    of pre- and postnatal exposure to drugs or adverse environments,
    including risk for future substance use, mental disorders, and other
    behavioral and developmental problems. The Committee recognizes that
    the BCD Study is supported in part by the NIH HEAL Initiative?, and
    encourages other NIH Institutes, such as NICHD, NIMH, NHLBI, NCI,
    NIAAA, NIMH, NINR, as well as the Office of the Director to support
    this important study.
        Drug abuse is costly to Americans; it ruins lives, while tearing at
    the fabric of our society and taking a financial toll on our resources.
    Over the past three decades, NIDA-supported research has revolutionized
    our understanding of addiction as a chronic, often-relapsing brain
    disease -this new knowledge has helped to correctly emphasize the fact
    that drug addiction is a serious public health issue that demands
    strategic solutions.
        NIDA supports a comprehensive research portfolio that spans the
    continuum of basic neuroscience, behavior and genetics research through
    medications development and applied health services research and
    epidemiology. While supporting research on the positive effects of
    evidence-based prevention and treatment approaches, NIDA also
    recognizes the need to keep pace with emerging problems. We have seen
    encouraging trends in strategies to address these problems, but areas
    of continuing significant concern include the recent increase in
    lethalities due to heroin and synthetic fentanyl, as well as continued
    abuse of prescription opioids. Our knowledge of how drugs work in the
    brain, their health consequences, how to treat people already addicted,
    and what constitutes effective prevention strategies has increased
    dramatically due to research. However, since the number of individuals
    who are affected is still rising, we need to continue the work until
    this disease is both prevented and eliminated from society.
        We understand that the fiscal year 2021 budget cycle will involve
    setting priorities and accepting compromise, however, in the current
    climate we believe a focus on substance abuse and addiction deserves to
    be prioritized accordingly. Thank you for your support for the National
    Institute on Drug Abuse.

        [This statement was submitted by William L. Dewey, Ph.D., Friends
    of the
    National Institute on Drug Abuse.]
                                     ______

      Prepared Statement of the Friends of the National Institute on Aging
        Dear Chairman Blunt, Ranking Member Murray and Members of the
    Senate Appropriations Subcommittee on Labor, Health and Human Services,
    and Education, and Related Agencies:
        On behalf of the Friends of the National Institute on Aging
    (FoNIA), we are grateful for your leadership in advancing the mission
    of National Institutes of Health (NIH), and, in particular, the
    research supported and conducted by the National Institute on Aging
    (NIA). FoNIA is a coalition of more than 50 academic, patient-centered
    and non-profit organizations supporting NIA's mission to understand the
    nature of aging and the aging process, and diseases and conditions
    associated with growing older in order to extend the healthy, active
    years of life.
        As you prepare the fiscal year 2021 appropriations legislation, we
    ask that Federal resources be dedicated to sustain and enhance the
    timely and promising aging research at NIA and across the National
    Institutes of Health (NIH). FoNIA requests:
      --$44.7 billion--a $3 billion increase--in fiscal year 2021 for total
            spending at NIH, which aligns with the overall recommendation
            of the Ad Hoc Group for Medical Research;
      --Within this amount, an increase of least $500 million specifically
            dedicated to support cross-Institute aging research at the NIH,
            including but not limited to biomedical, behavioral and social
            sciences aging research;
      --A minimum increase of $354 million specific to research on
            Alzheimer's disease and related dementias (ADRD). The NIA is
            the primary Federal agency supporting and conducting
            Alzheimer's disease and related dementias research.
        FoNIA understands that during this time of crisis, the Senate
    Appropriations Committee is working hard to stem fallout of both the
    human and fiscal toll of COVID-19. We are grateful for your efforts and
    urge that the Committee continues work on policies that benefit us all
    in this unprecedented pandemic. We know that through determination,
    sacrifice and resilience, Americans will rise to the challenge and take
    the necessary steps to mitigate the fallout of this public health
    emergency.
        Looking to fiscal year 2021, we must continue funding investments
    in aging research, including research for Alzheimer's disease and
    related dementias (ADRD). The number of people ages 65 and older in the
    United States is projected to more than double from 46 million today to
    more than 98 million by 2060.\1\ Between 2020 and 2030 alone, the
    number of older persons is projected to increase by almost 18 million
    as the last of the large baby boom cohorts reaches age 65.\2\ Although
    much smaller in total size, the number of people ages 85 and older is
    projected to more than triple from 6 million today to nearly 20 million
    by 2060.\3\
    ---------------------------------------------------------------------------
        \1\ POPULATION REFERENCE BUREAU, Population Bulletin, VOL. 70, NO.
    2 (December, 2015) (www.prb.org/wp-content/uploads/2016/01/aging-us-
    population-bulletin-1.pdf).
        \2\ Ibid.
        \3\ Ibid.
    ---------------------------------------------------------------------------
        As growing numbers of Americans live well into their 80s, aging-
    related diseases and multiple chronic conditions will become an even
    larger public health concern. Advancing age is the major risk faster
    for a number of chronic diseases. For example, as our nation ages,
    incidences of the number of persons affected by dementia are expected
    to double by 2060 from around 5 million cases today to 14.9 million
    cases.\4\
    ---------------------------------------------------------------------------
        \4\ Matthews, Kevin A. et al., Racial and ethnic estimates of
    Alzheimer's disease and related dementias in the United States (2015-
    2060) in adults aged *65 years, Alzheimer's & Dementia: The Journal of
    the Alzheimer's Association, Volume 15, Issue 1, 17--24
    (2018)(www.ncbi.nlm.nih.gov/pubmed/30243772). The burden of ADRD in
    2014 was an estimated 5.0 million adults aged *65 years or 1.6 percent
    of the population. ADRD burden will double to 3.3 percent by 2060 when
    13.9 million Americans are projected to have the disease.
    ---------------------------------------------------------------------------
        The NIA sponsors and conducts the lion's share of Federal aging-
    related research and this pioneering research contributes significantly
    to the improved care and quality of life of older adults. A key NIA
    priority is to translate research into better and more efficient care
    through the development of effective interventions that are
    disseminated to healthcare providers, patients and caregivers. These
    interventions for the prevention, early detection, diagnosis and
    treatment of disease will help reduce the burden of illness for older
    adults and reduce the cost of care.
        NIA is at the forefront of applying scientific advancements to
    enhance the health of older adults, lengthen life, and reduce illness
    and disability. NIA supports studies on aging through extramural and
    intramural programs, focusing on aging processes, age-related diseases,
    and special problems and needs of the aged. The extramural program
    funds research and training at universities, hospitals, medical
    centers, and other public and private organizations nationwide.
        In the area of dementia, NIA supports vital research where more
    scientific investigation is needed to improve AD/ADRD prevention,
    diagnosis, treatment and care; basic science approaches to illuminate
    neurodegenerative mechanisms/pathways; and computational/biological
    systems approaches to identify, model and predict the architecture and
    dynamics of the molecular interactions underlying AD/ADRD pathogenesis.
        With your continued support, NIA is accelerating scientific
    discoveries in aging. With millions of Americans facing the loss of
    their functional abilities, their independence and their lives to
    chronic diseases of aging, there is a pressing need for robust and
    sustained investment in the vital work of the NIA. Continued, and
    meaningful investments in the NIA will make it possible to ultimately
    enhance the quality of care for older adults across the nation.
        Thank you for your consideration of this funding request. Should
    you need additional information, feel free to contact me at
    esokol@alzfdn.org.

        Sincerely.

        [This statement was submitted by Eric W. Sokol, Chair, Friends of
    the National Institute on Aging.]
                                     ______

                       Prepared Statement of FSHD Society
        Honorable Chairman Blunt, Ranking Member Murray, and distinguished
    members of the Subcommittee, thank you for the opportunity to testify.
        Facioscapulohumeral Disease (FSHD) is a heritable disease and one
    of the most common neuromuscular disorders with a prevalence of
    1:8,000.\1\ It affects 934,000 children and adults of both sexes
    worldwide. FSHD is characterized by progressive loss of muscle strength
    that is asymmetric and widely variable. Muscle weakness typically
    starts at the face, shoulder girdle and upper arms, often progressing
    to the legs, torso and other muscles. In addition to affecting muscle
    it can bring with it breathing issues, hearing loss, eye problems and
    cardiac arrhythmias. FSHD causes significant disability and death.
    ---------------------------------------------------------------------------
        \1\ Deenen, J. C. W. et al. Population-based incidence and
    prevalence of facioscapulohumeral dystrophy. Neurology 83, 1056-9
    (2014).
    ---------------------------------------------------------------------------
        FSHD is associated with epigenetic changes at chromosome 4q35 in
    the D4Z4 DNA macrosatellite repeat array region leading to an
    inappropriate gain of expression (function) of the D4Z4-embedded double
    homeobox 4 (DUX4) gene.\2\ DUX4 is a transcription factor that kick
    starts the embryonic genome during the 2- to 8-cell stage of
    development.\3,4,5\ Ectopic expression of DUX4 in skeletal muscle leads
    to muscle death. DUX4 is never expressed in 'healthy' muscle. FSHD has
    had few clinical trials,\6,7,8,9,10\ and currently there is no cure or
    therapeutic option available to patients. DUX4 requires and needs to
    activate its direct transcriptional targets for DUX4-induced gene
    aberration and muscle
    toxicity.\11,12,13,14,15,16,17,18,19,20,21,22,23,24\ Blocking DUX4's
    RNA or DUX4's protein ability to activate its targets has profound
    therapeutic relevance.\25\
    ---------------------------------------------------------------------------
        \2\ Wang, L. H. & Tawil, R. Facioscapulohumeral Dystrophy. Curr.
    Neurol. Neurosci. Rep. 16, 66 (2016).
        \3\ Hendrickson, P. G. et al. Conserved roles of mouse DUX and
    human DUX4 in activating cleavage-stage genes and MERVL/HERVL
    retrotransposons. Nat. Genet. 49, 925-934 (2017).
        \4\ Whiddon, J. L., Langford, A. T., Wong, C.-J., Zhong, J. W. &
    Tapscott, S. J. Conservation and innovation in the DUX4-family gene
    network. Nat. Genet. 49, 935-940 (2017).
        \5\ De Iaco, A. et al. DUX-family transcription factors regulate
    zygotic genome activation in placental mammals. Nat. Genet. 49, 941-945
    (2017).
        \6\ Tawil, R. et al. A pilot trial of prednisone in
    facioscapulohumeral muscular dystrophy. FSHDY Group. Neurology 48, 46-9
    (1997).
        \7\ Passerieux, E. et al. Effects of vitamin C, vitamin E, zinc
    gluconate, and selenomethionine supplementation on muscle function and
    oxidative stress biomarkers in patients with facioscapulohumeral
    dystrophy: a double-blind randomized controlled clinical trial. Free
    Radic. Biol. Med. 81, 158-69 (2015).
        \8\ Kissel, J. T. et al. Randomized, double-blind, placebo-
    controlled trial of albuterol in facioscapulohumeral dystrophy.
    Neurology 57, 1434-40 (2001).
        \9\ Elsheikh, B. H. et al. Pilot trial of diltiazem in
    facioscapulohumeral muscular dystrophy. Neurology 68, 1428-9 (2007).
        \10\ Wagner, K. R. et al. A phase I/II trial of MYO-029 in adult
    subjects with muscular dystrophy. Ann. Neurol. 63, 561-71 (2008).
        \11\ Rickard, A. M., Petek, L. M. & Miller, D. G. Endogenous DUX4
    expression in FSHD myotubes is sufficient to cause cell death and
    disrupts RNA splicing and cell migration pathways. Hum. Mol. Genet. 24,
    5901-14 (2015).
        \12\ Sandri, M. et al. Caspase 3 expression correlates with
    skeletal muscle apoptosis in Duchenne and facioscapulo human muscular
    dystrophy. A potential target for pharmacological treatment? J.
    Neuropathol. Exp. Neurol. 60, 302-12 (2001).
        \13\ Block, G. J. et al. Wnt/b-catenin signaling suppresses DUX4
    expression and prevents apoptosis of FSHD muscle cells. Hum. Mol.
    Genet. 22, 4661-72 (2013).
        \14\ Statland, J. M. et al. Immunohistochemical Characterization of
    Facioscapulohumeral Muscular Dystrophy Muscle Biopsies. J. Neuromuscul.
    Dis. 2, 291-299 (2015).
        \15\ Rickard, A. M., Petek, L. M. & Miller, D. G. Endogenous DUX4
    expression in FSHD myotubes is sufficient to cause cell death and
    disrupts RNA splicing and cell migration pathways. Hum. Mol. Genet. 24,
    5901-14 (2015).
        \16\ Kowaljow, V. et al. The DUX4 gene at the FSHD1A locus encodes
    a pro-apoptotic protein. Neuromuscul. Disord. 17, 611-23 (2007).
        \17\ Bosnakovski, D. et al. An isogenetic myoblast expression
    screen identifies DUX4-mediated FSHD-associated molecular pathologies.
    EMBO J. 27, 2766-79 (2008).
        \18\ Wallace, L. M. et al. DUX4, a candidate gene for
    facioscapulohumeral muscular dystrophy, causes p53-dependent myopathy
    in vivo. Ann. Neurol. 69, 540-52 (2011).
        \19\ Geng, L. N. et al. DUX4 activates germline genes,
    retroelements, and immune mediators: implications for
    facioscapulohumeral dystrophy. Dev. Cell 22, 38-51 (2012).
        \20\ Yao, Z. et al. DUX4-induced gene expression is the major
    molecular signature in FSHD skeletal muscle. Hum. Mol. Genet. 23, 5342-
    52 (2014).
        \21\ Homma, S., Beermann, M. Lou, Boyce, F. M. & Miller, J. B.
    Expression of FSHD-related DUX4-FL alters proteostasis and induces TDP-
    43 aggregation. Ann. Clin. Transl. Neurol. 2, 151-66 (2015).
        \22\ Jagannathan, S. et al. Model systems of DUX4 expression
    recapitulate the transcriptional profile of FSHD cells. Hum. Mol.
    Genet. 25, 4419-4431 (2016).
        \23\ Jones, T. I. et al. Facioscapulohumeral muscular dystrophy
    family studies of DUX4 expression: evidence for disease modifiers and a
    quantitative model of pathogenesis. Hum. Mol. Genet. 21, 4419-30
    (2012).
        \24\ Campbell AE, Shadle SC, Jagannathan S, Lim JW, Resnick R,
    Tawil R, van der Maarel SM, Tapscott SJ. NuRD and CAF-1-mediated
    silencing of the D4Z4 array is modulated by DUX4-induced MBD3L
    proteins. Elife. 2018 Mar 13;7. pii: e31023. doi: 10.7554/eLife.31023.
    (2018).
        \25\ Jagannathan S1,2,3, Ogata Y4, Gafken PR4, Tapscott SJ3,
    Bradley RK1. Quantitative proteomics reveals key roles for post-
    transcriptional gene regulation in the molecular pathology of
    facioscapulohumeral muscular dystrophy. Elife. 2019 Jan 15;8. pii:
    e41740. doi: 10.7554/eLife.41740. (2019).
    ---------------------------------------------------------------------------
        NIH-supported basic research on muscle disease and muscular
    dystrophy over the past 25 years has improved health outcomes. Small
    molecule and genetically engineered therapies are now in the works for
    FSHD and on the market for several neuromuscular diseases!
    \26,27,28,29,30,31,32\ Each year, the non-profit, private and public
    investment in research yields critical advances in FSHD. Together we
    foster new treatments, diagnostics, and intervention strategies that
    affect the health of our nation. Meticulous efforts by FSHD
    researchers/clinicians working with funding from FSHD Society, the NIH
    and others have brought forth significant advancements in epigenetic
    diseases. FSHD is the only human disease known to be caused by the
    contraction of repetitive ``junk'' DNA. The Society has funded
    approximately $15 million in seed grants for research.
    ---------------------------------------------------------------------------
        \26\ Himeda CL, Jones, et al. CRISPR/dCas9-mediated Transcriptional
    Inhibition Ameliorates the Epigenetic Dysregulation at D4Z4 and
    Represses DUX4-fl in FSH Muscular Dystrophy. Mol Ther. 2016
    Mar;24(3):527-35. epub 2015 Nov 3. (2016).
        \27\ Chen JC, King OD, Zhang Y, et al. Morpholino-mediated
    Knockdown of DUX4 Toward Facioscapulohumeral Muscular Dystrophy
    Therapeutics. Molecular Therapy. 2016;24(8):1405-1411. doi:10.1038/
    mt.2016.1118. (2016).
        \28\ Himeda CL, Jones TI, Virbasius CM, Zhu LJ, Green MR, Jones PL.
    Identification of Epigenetic Regulators of DUX4-fl for Targeted Therapy
    of Facioscapulohumeral Muscular Dystrophy. Mol Ther. 2018 Jul
    5;26(7):1797-1807. doi: 10.1016/j.ymthe.2018.04.019. Epub 2018 Apr 26.
    (2018).
        \29\ Giesige CR, Wallace LM, Heller KN, Eidahl JO, Saad NY, Fowler
    AM, Pyne NK, Al-Kharsan M, Rashnonejad A, Chermahini GA, Domire JS,
    Mukweyi D, Garwick-Coppens SE, Guckes SM, McLaughlin KJ, Meyer K,
    Rodino-Klapac LR, Harper SQ. AAV-mediated follistatin gene therapy
    improves functional outcomes in the TIC-DUX4 mouse model of FSHD. JCI
    Insight. 2018 Nov 15;3(22). pii: 123538. doi: 10.1172/
    jci.insight.123538. (2018).
        \30\ Lee JK, Bosnakovski D, Toso EA, Dinh T, Banerjee S, Bohl TE,
    Shi K, Orellana K, Kyba M, Aihara H. Crystal Structure of the Double
    Homeodomain of DUX4 in Complex with DNA. Cell Rep. 2018 Dec
    11;25(11):2955-2962.e3. doi: 10.1016/j.celrep.2018.11.060. (2018).
        \31\ Marsollier AC, Joubert R, Mariot V, Dumonceaux J. Targeting
    the Polyadenylation Signal of Pre-mRNA: A New Gene Silencing Approach
    for Facioscapulohumeral Dystrophy. Int J Mol Sci. 2018 May 3;19(5).
    pii: E1347. doi: 10.3390/ijms19051347. Review. (2018).
        \32\ Dion C, Roche S, Laberthonniere C, Broucqsault N, Mariot V,
    Xue S, Gurzau AD, Nowak A, Gordon CT, Gaillard MC, El-Yazidi C, Thomas
    M, Schlupp-Robaglia A, Missirian C, Malan V, Ratbi L, Sefiani A,
    Wollnik B, Binetruy B, Salort Campana E, Attarian S, Bernard R, Nguyen
    K, Amiel J, Dumonceaux J, Murphy JM, Dejardin J, Blewitt ME, Reversade
    B, Robin JD, Magdinier F. SMCHD1 is involved in de novo methylation of
    the DUX4-encoding D4Z4 macrosatellite. Nucleic Acids Res. 2019 Jan 30.
    doi: 10.1093/nar/gkz005. [Epub ahead of print] (2019).
    ---------------------------------------------------------------------------
        The FSHD scientific community listed 2020-2021 priorities as:
    2020 Industry and Scientific Research Priorities
      --Clinical Trials Readiness Infrastructure and Therapeutics
      --Biomarkers, Direct and Surrogate
      --Genetic Testing, Genetics and Epigenetics
      --Imaging and Outcome Measures
      --Registries and Patient Reported Outcomes
        Your Subcommittee and Congress in partnership with NIH, patients
    and scientists have made truly outstanding progress in understanding
    and treating the nine major types of muscular dystrophy through the
    Muscular Dystrophy Community Assistance, Research and Education
    Amendments of 2001 (MD-CARE Act, Public Law 107-84). The Federal
    advisory committee mandated by MD CARE Act, called the MDCC, along with
    working groups of outside scientific experts in the field assembled the
    '2015 NIH Action Plan for the Muscular Dystrophies.' It was presented
    by the Director of NIH to Congress. It specifies 81 objectives, in six
    sections (mechanism, screening, treatments, trial readiness, access to
    care, infrastructure including workforce) in need of funding and
    further development.\33\ The genetics that give rise to FSHD are so
    remarkable, NIH Director Dr. Francis Collins emphasized its
    significance on the front page of the New York Times, saying ``If we
    were thinking of a collection of the genome's greatest hits, this
    [FSHD] would go on the list.'' \34\
    ---------------------------------------------------------------------------
        \33\ Rieff HI, Katz SI et al. The Muscular Dystrophy Coordinating
    Committee Action Plan for the Muscular Dystrophies. Muscle Nerve. 2016
    Mar 21. [Epub ahead of print] (2016).
        \34\ Kolata, G., Reanimated 'Junk' DNA Is Found to Cause Disease.
    New York Times, Science. Published online: August 19, 2010 http://
    www.nytimes.com/2010/08/20/science/20gene.html.
    ---------------------------------------------------------------------------
        Honorable Chairman, these advances in scientific understanding and
    epidemiological surveillance come at a significant cost. Since passing
    the MD CARE Act in 2001, NIH funding for FSHD has been unbalanced given
    the growth in discoveries and needs to be set right.

                                      FSHD RESEARCH DOLLARS & FSHD AS A PERCENTAGE OF TOTAL NIH PMUSCULAR DYSTROPHY FUNDING
                                                                      [Dollars in millions]
    --------------------------------------------------------------------------------------------------------------------------------------------------------
                     Fiscal Year                    2008    2009    2010    2011    2012    2013    2014    2015    2016    2017     2018     2019     2020
    --------------------------------------------------------------------------------------------------------------------------------------------------------
    All MD ($ millions)..........................     $56     $83     $86     $75     $75     $76     $78     $77     $79     $81    $85ea      $83     $88e
    FSHD ($ millions)............................      $3      $5      $6      $6      $5      $5      $7      $8      $9   $12.8   $13.7a      $17   $17.7a
    FSHD (percent total MD)......................      5%      6%      7%      8%      7%      7%      9%     10%     11%     16%      16%      20%      20%
    --------------------------------------------------------------------------------------------------------------------------------------------------------
    Sources: NIH/OD Budget Office & NIH OCPL & NIH RePORT RCDC (e=estimate, a=actual)

        The NIH is the principal worldwide source of funding of research on
    FSHD. Currently active projects are $16.552 million fiscal year 2021
    (current actual), a 21 percent portion of the estimated $80 million
    spent on all muscular dystrophies. (source: NIH Research Portfolio
    Online Reporting Tools (RePORT) keyword 'FSHD or facioscapulohumeral or
    landouzy-dejerine').
        Without research on muscle disease, supported by the FSHD patient-
    advocacy groups in concert with the NIH biomedical research funding--
    families with FSHD would be living shorter, less productive, and far
    less hopeful lives. Nearly 41,000 Americans have FSHD, a disease that
    can cause damage to skeletal muscle, hearing, vision, breathing and
    lead to death.
        What we need. Viewing at the current portfolio alongside the areas
    in need of bolstering in FSHD the NIH needs to fast expand its
    portfolio. Specifically, NIH needs to increase funding by adding R01
    and R21 style grants in areas outlined by hundreds of experts in the
    DHHS NIH MD Plan. The engine of Federal research runs on the basic
    building blocks of workforce training, exploratory/developmental
    research grants (parent R21) and research project grants (parent R01).
    NIH can issue targeted funding announcements covering FSHD. A request
    for applications (RFA) on FSHD will yield results. These efforts will
    help convey to FSHD patients and allied researchers that NIH encourages
    more grant applications coming through its front door.
        We request for fiscal year 2021, a tripling of the NIH FSHD
    research portfolio to $54 million. We are very appreciative of the slow
    but steady year-to-year increases and thank NIH and Congress. At this
    moment in time, FSHD needs an infusion of NIH grants both submitted and
    funded--investments in centers, collaborative research grants--and,
    most importantly, a rapid ramp up of basic/exploratory, preclinical and
    therapeutic research awards along with moderate expansion of post-
    doctoral and clinical training fellowships. FSHD research calls for and
    needs this additional funding in order to succeed.
        Honorable Chairman, thank you again for your help and efforts.

        [This statement was submitted by Daniel Paul Perez, Co-founder,
    FSHD Society.]
                                     ______

       Prepared Statement of the Gateway Geriatric Workforce Enhancement
            Program and the Geriatrics Workforce Enhancement Program
        As the Co-Project Directors of the Gateway Geriatric Workforce
    Enhancement Program at Saint Louis University School of Medicine, we
    are pleased to submit this joint statement for the record recommending
    appropriations of at least $51 million in fiscal year 2021 to support
    geriatrics workforce training under the Geriatrics Workforce
    Enhancement Program (GWEP) and the Geriatric Academic Career Award
    (GACA) program administered by the Health Resources and Services
    Administration (HRSA). We thank you for your past support.
        We would like to thank you and HRSA for providing funding for the
    48 GWEP sites to develop telehealth delivery systems for providing
    geriatric education, training, and services and hope that the GWEP
    sites will be able to receive additional funds to expand this work
    through the HEROES Act or next emergency legislation. The staff at the
    GWEP sites and GACA recipients, both funded by HRSA, are playing a
    major role in the COVID-19 response for the most susceptible
    populations as front-line practitioners and by supporting, educating,
    and training healthcare professionals, community-based partners,
    caregivers, and patients. The National Association of Geriatric
    Education (NAGE) conducted a survey of GWEP sites to assess how these
    programs are adapting to the impact of COVID-19 and how sites could use
    additional resource during the pandemic. Current adaptations include:
    converting healthcare professional and community education events to
    online opportunities; converting evidence-based programs to online
    opportunities; creating COVID-19 training materials for clinical and
    social service settings as well as community partners; implementing or
    supporting implementation of telehealth; conducting community education
    through media appearances/interviews; converting academic offerings to
    online platforms; conducting outreach to patients to facilitate
    advanced care planning; increasing outreach to older adults; and
    increasing outreach to community/GWEP partners. Multiple GWEPs are
    creating educational materials focused on COVID-19-related topics
    including social isolation, loneliness, telehealth delivery and
    training for older adults/caregivers, advance care planning, and
    infection prevention. Here at Saint Louis University, we have developed
    a COVID-19 webpage, begun to deliver geriatric education and services
    virtually through video/phone conferencing and social media, and are
    utilizing HRSA telehealth funds to develop a HIPAA-compliant telehealth
    platform to expand our geriatric education and service delivery.
        At this time, GWEP sites and GACA recipients are in need of
    additional resources to continue and expand our COVID-related work,
    including funds for technology/equipment; webpage and materials
    conversion; expanding Project ECHO/telehealth; expanding community,
    hospital, long term care, and community programs and education; staff
    support for phone reassurance and education with patients/caregivers
    including homebound older adults; rural community outreach; management
    of psychosocial issues such as social isolation and loneliness, anxiety
    and depression among older adults; and dementia friendly resources and
    programs. We have requested $10.9 million to be included in the next
    emergency package. This is separate from our fiscal year 2021 request
    described below.
        The most resent Notice of Funding Opportunity (NOFO) for geriatrics
    funded 48 GWEP sites and one of their primary responsibilities is to
    educate primary care providers in caring for older adults.
    Unfortunately, each GWEP received about $100,000 less for their
    programs than the first round of grants provided in 2015. Our funding
    request for $51 million would allow for additional GWEP sites in rural
    and underserved communities and for supplemental payments for GWEPs
    that provide additional training for caregivers, including family
    caregivers. This request would also include at least the cost of the
    recent NOFO for 26 GACA Program awards. These two geriatrics programs
    were funded at $40.7 million in fiscal year 2020.
        In fiscal year 2015, HRSA combined the geriatric education programs
    in Titles VII and VIII of the Public Health Service Act, including the
    Geriatric Academic Career Award, as well as portions of the Alzheimer's
    Disease Prevention, Education, and Outreach Program to establish the
    Geriatrics Workforce Enhancement Program (GWEP). The GWEP is one of
    only two Federal programs designed to develop a healthcare workforce
    specifically trained to care for the complex health needs of older
    Americans with the most effective and efficient methods, providing
    higher quality care and saving valuable resources by reducing
    unnecessary costs. As you are aware, the number of Americans ages 65
    and older will double to over 98 million by 2060, creating an
    imperative for policymakers to enhance the education of health
    professionals to improve care of older persons and, thus decrease costs
    of care.
        Proven results from activities under the GWEP and its predecessor
    programs include an important increase in the number of teaching
    faculty with geriatrics expertise in a variety of disciplines, plus
    thousands of healthcare providers and family caregivers better prepared
    to support older Americans with complex chronic conditions. We
    recognize that the Subcommittee faces complex decisions in a
    constrained budget environment, but we believe a top priority should be
    a commitment to geriatric education programs that help the nation's
    health workforce better serve the rapidly increasing number of older
    persons.
        The nation faces a shortage of geriatrics health professionals and
    direct service workers. There are not enough geriatricians, advanced
    practice nurses, and other health professionals with the knowledge,
    skills, and training in geriatrics to meet the needs of our rapidly
    growing population of older adults and to support their family
    caregivers. Too often, the result is expensive walk-in care and
    inappropriate return to hospital within thirty days of discharge. We
    believe that funding for GWEP-based geriatric education supports a
    sustainable future for the nation's healthcare and Social Security
    systems by ensuring that (a) healthcare specialists trained in
    geriatric care do not become an expensive resource from which only a
    select few are able to benefit and (b) direct service workers and
    family caregivers are prepared to support a lower cost, independent
    lifestyle for community residing elders.
        In recent years, GWEPs have continued the impressive work of the
    Geriatric Education Centers. Approximately half of the GWEPs provide
    education for areas that are more than 50 percent rural. In the 2017-
    2018 academic year, GWEPs provided gerontological education to more
    than 49,000 fellows and students. Continuing education for the current
    workforce is another critical part of the program's success with
    212,444 faculty and practicing professionals participated in 1,564
    unique continuing education courses offered by GWEP grantees during
    this period. Saint Louis University and other GWEPs are partnering with
    federally Qualified Health Centers to provide geriatric primary care
    education and didactic training. GWEPs create opportunities for
    healthcare providers in underserved and remote areas of the country to
    consult with top experts in geriatric care through Interactive
    Televideo (ITV), interactive teleconsults, and synchronous webcasts,
    and make available thousands of hours of online geriatric education
    programs.
        The Gateway Geriatric Education Center at Saint Louis University
    has provided education to 25,611 health professionals and 5,904 members
    of the public since 2016. These health professionals have provided
    screenings for geriatric problems such as frailty, sarcopenia (muscle
    weakness), falls, and dementia to 9,280 older adults in all six
    Congressional districts in Missouri. More than 80 percent of this
    trainings and evaluation of older persons were in primary care settings
    and medically underserved communities. Developed specifically for the
    GWEP, the Rapid Geriatric Assessment has been computerized in multiple
    health systems, including Perry County Memorial Hospital in Perryville,
    Missouri, a critical access hospital in rural Perry County, and
    CARESTLHealth, a federally Qualified Health Center in north St. Louis
    city, Missouri. In Perry County, over 25 percent of the older adults in
    the county have been screened using this assessment process. Our
    screenings thus far, have identified 25.4 percent with dementia and
    31.9 percent with falls. Early intervention for these conditions can
    decrease medical costs. Upon identifying concerns in any of the
    assessment areas, older patients are referred for other GWEP-initiated
    services, to include: Cognitive Stimulation Therapy-a non-pharmacologic
    intervention for persons with dementia or Exercise and Strengthening
    programming. In addition, our GWEP has provided education through in-
    person and on-line continuing education, through daily tweets on
    Twitter (@meddocslu)-828, to date--and with 102 postings to LinkedIn
    and Facebook. Our GWEP also co-produced a regional prime time
    television program on aging which was viewed by 340,739 persons. The
    YouTube site has had 103,200 views.
        Obviously, the GWEPs are playing a major role in improving
    healthcare for older adults in the United States. Multiply this by 44
    (the number of existing GWEPs) and you can begin to visualize the scope
    and impact of this program across the nation. It is important to note
    that every GWEP is focused on meeting the needs of rural and/or
    underserved populations; many serve predominantly people of color and
    those who are economically challenged.
        GWEP awardees have received expanded authorization to provide
    family caregivers and direct service workers with instruction on
    prominent issues in the care of older adults, such as Alzheimer's
    Disease and other dementias, palliative care, self-care, chronic
    disease self-management, falls, and maintaining independence, among
    others. In Missouri, we have developed Cognitive Stimulation Therapy
    (CST) aimed at enhancing functioning in persons with moderate
    Alzheimer's disease. We have trained over 1200 persons to deliver this
    intervention and this has led to over 500 persons with dementia
    participating in this effective intervention which our research has
    shown to improve cognition. Our GWEP has recently been designated by
    the founders of CST as the North American CST Training Center.
        HRSA has estimated that more than 50,000 paid and family caregivers
    will participate in GWEP training programs. For example, the GWEP at
    Saint Louis University is partnering with several Area Agencies on
    Aging, the local Alzheimer's Association, a rural hospital, a rural
    osteopathic school, the regional Area Health Education Centers, and
    dementia-focused community care agencies to train staff and family
    caregivers in assessing and supporting them through the caregiving
    process. The 2016 National Academies of Sciences, Engineering, and
    Medicine (NASEM) report Families Caring for an Aging America
    acknowledged that training must go beyond the healthcare professions
    and support family caregivers. This will improve the quality of health
    outcomes while saving valuable resources in the healthcare system.
        In summary, GWEPs have improved the supply, distribution,
    diversity, capabilities, and quality of healthcare professionals who
    care for our nation's growing older adult population, including the
    underserved and minorities. They train physicians, nurses, social
    workers, dentists, mental health professionals, pharmacists, and
    caregivers. In some states, the GWEP is offering training to first
    responders to keep elders safe in their communities. Some of the
    professionals trained through GWEPs will become academicians in
    geriatric medicine, dentistry, psychiatry, nursing, and allied health
    professions, thereby giving additional cohorts of professionals skills
    they need to properly serve older Americans. Furthermore, GWEPs create
    and deliver community-based programs that provide patients, families,
    and caregivers with the skills to care for older adults and improve
    health outcomes, including Alzheimer's disease education. The GWEPs are
    serving as change agents and helping to transform a fragmented and
    outmoded system.
        We ask for your continued support for geriatric programs to
    adequately prepare the next generation of health professionals and care
    providers for the rapidly changing and emerging needs of the growing
    and aging population.
        On behalf of NAGE and those who have benefitted in Missouri and
    from our colleagues around the country, thank you for your thoughtful
    consideration of our request for funding for GWEPs and GACAs in fiscal
    year 2021. NAGE is a non-profit membership organization representing
    GWEPs, Geriatric Education Centers, Centers on Aging, and other
    programs that provide education and training to healthcare
    professionals and others in geriatrics and gerontology.
                                     ______

            Prepared Statement of GBS|CIDP Foundation International
                summary of recommendations for fiscal year 2021
    _______________________________________________________________________

      --Provide $44.7 billion for the National Institutes of Health (NIH)
            and proportional increases across its Institutes and Centers
      --Continue expanding GBS research supported by NIH with proportional
            funding increases for the National Institute of Neurological
            Disorders and Stroke (NINDS), and the National Institute of
            Allergy and Infectious Diseases (NIAID)
    _______________________________________________________________________

        Chairman Blunt, Ranking Member Murray and distinguished members of
    the Subcommittee, thank you for your time and your consideration of the
    priorities of the community of individuals impacted by Guillain-Barre
    Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy
    (CIDP), and related conditions as you work to craft the fiscal year
    2021 L-HHS Appropriations Bill.
               about gbs, cidp, variants, and related conditions
    Guillain-Barre Syndrome
        Guillain-Barre Syndrome (GBS) is an inflammatory disorder of the
    peripheral nerves outside the brain and spinal cord. GBS is
    characterized by the rapid onset of numbness, weakness, and often
    paralysis of the legs, arms, breathing muscles, and face. Paralysis is
    ascending, meaning that it travels up the limbs from fingers and toes
    towards the torso. Loss of reflexes, such as the knee jerk, are usually
    found. Usually, a new case of GBS is admitted to ICU (Intensive Care)
    to monitor breathing and other body functions until the disease is
    stabilized. Plasma exchange (a blood ``cleansing'' procedure) and high
    dose intravenous immune globulins are often helpful to shorten the
    course of GBS. The acute phase of GBS typically varies in length from a
    few days to months. Patient care involves the coordinated efforts of a
    team such as a neurologist, physiatrist (rehabilitation physician),
    internist, family physician, physical therapist, occupational
    therapist, social worker, nurse, and psychologist or psychiatrist.
    Recovery may occur over 6 months to 2 years or longer. A particularly
    frustrating consequence of GBS is long-term recurrences of fatigue and/
    or exhaustion as well as abnormal sensations including pain and muscle
    aches.
    Chronic Inflammatory Demyelinating Polyneuropathy
        CIDP is a rare disorder of the peripheral nerves characterized by
    gradually increasing weakness of the legs and, to a lesser extent, the
    arms. It is the gradual onset as well as the chronic nature of CIDP
    that differentiates it from GBS. Like GBS, CIDP is caused by damage to
    the covering of the nerves, called myelin. It can start at any age and
    in both genders. Weakness occurs over two or more months. Unlike GBS,
    CIDP is chronic, with symptoms constantly waxing and waning. Left
    untreated, 30 percent of CIDP patients will progress to wheelchair
    dependence. Early recognition and treatment can avoid a significant
    amount of disability.
        Post-treatment life depends on whether the disease was caught early
    enough to benefit from treatment options. The gradual onset of CIDP can
    delay diagnosis by several months or even years, resulting in
    significant nerve damage that may take several courses of treatment
    before benefits are seen. The chronic nature of CIDP differentiates
    long-term care from GBS patients. Adjustments inside the home may need
    to be made to facilitate a return to normal life.
                              about the foundation
        The Foundation's vision is that every person afflicted with GBS,
    CIDP, or variants has convenient access to early and accurate
    diagnosis, appropriate and affordable treatments, and dependable
    support services.
        The Foundation's mission is to improve the quality of life for
    individuals and families across America affected by GBS, CIDP, and
    their variants by:
      --Providing a network for all patients, their caregivers and families
            so that GBS or CIDP patients can depend on the Foundation for
            support, and reliable up-to-date information.
      --Providing public and professional educational programs worldwide
            designed to heighten awareness and improve the understanding
            and treatment of GBS, CIDP and variants.
      --Expanding the Foundation's role in sponsoring research and engaging
            in patient advocacy.
                   centers for disease control and prevention
        CDC and the National Center for Chronic Disease Prevention and
    Health Promotion (NCCDPHP) have resources that could be brought to bear
    to improve public awareness and recognition of GBS, CIDP and related
    conditions. The Foundation supports a meaningful increase to the
    Centers for Disease Control and Prevention as well as the establishment
    of a Chronic Disease Education and Awareness Program. This program
    seeks to provide collaborative opportunities for chronic disease
    communities such as ours that lack dedicated funding from ongoing CDC
    activities. Such a mechanism allows public health experts at the CDC to
    review project proposals on an annual basis and direct resources to
    high impact efforts in a flexible fashion.
                         national institutes of health
        NIH hosts a modest research portfolio focused on GBS, CIDP,
    variants, and related conditions. This research has led to important
    scientific breakthroughs and is well positioned to vastly improve our
    understanding of the mechanism behind these conditions. We ask that
    resources continue to be used to support the important collaboration
    between NIAID, NINDS and the GBS|CIDP community. This May we will be
    participating in a conference with NINDS that would allow intramural
    and extramural researchers to develop a roadmap that would lead
    research into these conditions into the next decade, and encourage
    younger investigators to apply for grants that lead to sustained
    research activities. We are continuing to have conversations with the
    leadership of both institutes to facilitate a robust agenda and list of
    goals for the Conference. In our meetings with the leadership, we also
    spoke about the possibilities of cross-institute work between NINDS and
    NIAID to expand the research and understanding of the link between Zika
    and GBS. While such a conference would not require additional
    appropriations, the Foundation urges you to provide NIH with meaningful
    funding increases to facilitate growth in the GBS, CIDP, and related
    conditions research portfolio.
                                 patient access
        As we have seen from communities that currently have access to home
    infusion, such as primary immunodeficiency diseases, the ability to
    choose the home as the preferred site of care has tremendous benefit in
    terms of health outcomes and overall convenience for patients.
    Individuals with CIDP and MMN often face mobility issues as limbs
    suffer nerve damage. Traveling to receive an infusion presents a
    tremendous hardship to many patients and their families. This hardship
    greatly affects rural patients who have to travel hundreds of miles to
    major cities in order to receive treatment, which can be both
    inconvenient and costly. The Foundation has seen that when there are
    obstacles to receiving regular infusions, patients tend to skip
    scheduled infusions, which leads to progressive disability. Many CIDP
    and MMN patients have access to IVIG home infusion through private
    insurance, which allows them to lead productive and active lives. When
    these individuals age on to Medicare, they can face disruption in their
    routine and suboptimal circumstances when managing their condition.
    Further, because the body's immune system is depressed at the end of an
    infusion cycle, CIDP and MMN patients face an elevated risk of
    contracting illness from visiting well-traveled sites of care for
    infusions. Most importantly, patients and physicians should have the
    authority to choose their preferred site of care. We hope that members
    of this subcommittee and Congress as a whole support legislation that
    will grant our patients this important access.
        The Foundation was founded 40 years ago, and the four pillars that
    guide our mission are: support, education, advocacy, and research. Our
    patients rely on the premier research that is carried out at the NIH to
    improve the diagnosis and treatment process of these devastating
    illnesses. Without appropriate funding to the NIH and CDC, my fear as a
    parent of a GBS survivor and the Executive Director of the Foundation,
    is that many patients will needlessly suffer. There is so much to
    learn; there is no bio-marker and we do not know why the immune system
    reacts to trigger these conditions. I ask the Committee to provide
    $44.7 billion to the NIH with proportional increases to NIAID and NINDS
    to continue the potentially lifesaving work being done for our
    community, and ask for Congressional support of our initiative to
    improve access to life-saving treatments.

        [This statement was submitted by Lisa Butler, Executive Director,
    GBS|CIDP Foundation International.]

                                     ______

                    Prepared Statement of Gee Kaitlin  deg.
                       Prepared Statement of Kaitlin Gee
        To the United States Subcommittee on Labor, Health and Human
    Services and Education,
        I am writing to you as a 29-year-old sister with a research
    background supporting a biological brother formally diagnosed with
    schizophrenia. I am disclosing this information because I anticipate
    that the majority of the testimonies you receive will be from a
    different generation, but I need you to understand that there are many
    individuals in all generations diagnosed with severe mental illness
    (i.e.: schizophrenia and bipolar disorder) and their families who are
    impacted and are yet left without a voice or unable to speak up because
    they do not have accessible resources to contact individuals in a
    position to make positive change on their behalf. I assure you, these
    families are struggling as they work to support a family member
    diagnosed with severe mental illness often because that individual is
    likely to suffer from anosognosia, which is when the diagnosed
    individual is incapable of realizing they themselves are mentally ill
    (as a result of said illness). Slashing funding will hurt all of these
    citizens and the families and organizations supporting them. Removing
    financial support for trials carried out by the NIMH will not make the
    issue go away; rather, the issue will only get worse than it already is
    and become more costly for the country long term than if we proactively
    support--financially support--research geared towards finding a
    solution for the severely mentally ill.
        Over the last 7 years, it has been immensely frustrating to watch
    my brother suffer the side effects as his medication regimen as his
    psychiatrists rotate through the same antipsychotics repeatedly because
    there are no new medications, no better medications developed or
    discovered available because there's so little funding for it.
    Continuing to de-fund research and drug treatment trials will result in
    trapping America's most vulnerable population in what would be the
    never-ending cycle of homelesness, incarceration This continued neglect
    of the severely and seriously mentally ill will have a ripple effect in
    the unraveling of the nation's fabric. There are family members like
    myself who are struggling to support our loved ones diagnosed with
    mental illnesses like schizophrenia while continuing to live what
    appears as ``normal'' a life as much as possible, who will mask that
    there's nothing wrong.
        Increasing funding to research and drug treatment trials
    surrounding severe mental illness including schizophrenia and bipolar
    disorder will help the nation's experts better understand what is
    working and what is not working. We learn something from each research
    investigation, from each clinical trial, from each drug treatment trial
    that we pursue in full. As we learn more, we get closer to finding the
    solution.
        The NIMH must continue to support drug treatment trials and
    demonstrate itself to be a leader in advocating for its most affected,
    yet neglected population. Please do the right thing on behalf of
    American citizens who are unable to advocate for themselves, who you
    are representing.
        Thank you for accepting my testimony.

                                     ______

                  Prepared Statement of Geesling Deborah  deg.
                     Prepared Statement of Deborah Geesling
        My name is Deborah Geesling. I am a mother, advocate, and President
    of P82 Project Restoration, a nonprofit organization focused on
    supporting individuals and families who battle against serious mental
    illness. My son is 28 years old and suffers with Schizophrenia and
    Bipolar Disorder.
        I am writing to appeal to you that the National Institute of Mental
    Health should return to its core mission and prioritize our citizens
    who suffer from the devastating effects of serious mental illnesses
    like Schizophrenia and Bipolar Disorder. I am asking that NIMH
    prioritize trials that find better drugs for these disorders. As a
    parent and advocate I was horrified to learn that this has mostly been
    ignored over the past few years.
        How can the only agency charged with oversight of such a vulnerable
    group of people abandon those who need our help the most? It is
    unconscionable! According to NIMH's own research from 2017,
    approximately 4.5 percent of the U.S. population has a serious mental
    illness. There is no excuse as to why the other 95.5 percent cannot
    figure out a way to help the 4.5 percent. Allowing them to languish in
    our prisons and homeless shelters is not acceptable. Schizophrenia and
    Bipolar disorder are brain illnesses. We would never accept this sort
    of dereliction of duty in relation to any other disability.
        May 2021 be a year of new beginnings.
        Thank you.

        [This statement was submitted by Deborah Geesling, President, P82
    Project
    Restoration.]
                                     ______

    Prepared Statement of the Geriatrics Workforce Enhancement Program and
                  the Geriatric Academic Career Award Program
        As the Co-Project Directors of the Gateway Geriatric Workforce
    Enhancement Program at Saint Louis University School of Medicine, we
    are pleased to submit this joint statement for the record recommending
    appropriations of at least $51 million in fiscal year 2021 to support
    geriatrics workforce training under the Geriatrics Workforce
    Enhancement Program (GWEP) and the Geriatric Academic Career Award
    (GACA) program administered by the Health Resources and Services
    Administration (HRSA). We thank you for your past support.
        We would like to thank you and HRSA for providing funding for the
    48 GWEP sites to develop telehealth delivery systems for providing
    geriatric education, training, and services and hope that the GWEP
    sites will be able to receive additional funds to expand this work
    through the HEROES Act or next emergency legislation. The staff at the
    GWEP sites and GACA recipients, both funded by HRSA, are playing a
    major role in the COVID-19 response for the most susceptible
    populations as front-line practitioners and by supporting, educating,
    and training healthcare professionals, community-based partners,
    caregivers, and patients. The National Association of Geriatric
    Education (NAGE) conducted a survey of GWEP sites to assess how these
    programs are adapting to the impact of COVID-19 and how sites could use
    additional resource during the pandemic. Current adaptations include:
    converting healthcare professional and community education events to
    online opportunities; converting evidence-based programs to online
    opportunities; creating COVID-19 training materials for clinical and
    social service settings as well as community partners; implementing or
    supporting implementation of telehealth; conducting community education
    through media appearances/interviews; converting academic offerings to
    online platforms; conducting outreach to patients to facilitate
    advanced care planning; increasing outreach to older adults; and
    increasing outreach to community/GWEP partners. Multiple GWEPs are
    creating educational materials focused on COVID-19-related topics
    including social isolation, loneliness, telehealth delivery and
    training for older adults/caregivers, advance care planning, and
    infection prevention. Here at Saint Louis University, we have developed
    a COVID-19 webpage, begun to deliver geriatric education and services
    virtually through video/phone conferencing and social media, and are
    utilizing HRSA telehealth funds to develop a HIPAA-compliant telehealth
    platform to expand our geriatric education and service delivery.
        At this time, GWEP sites and GACA recipients are in need of
    additional resources to continue and expand our COVID-related work,
    including funds for technology/equipment; webpage and materials
    conversion; expanding Project ECHO/telehealth; expanding community,
    hospital, long term care, and community programs and education; staff
    support for phone reassurance and education with patients/caregivers
    including homebound older adults; rural community outreach; management
    of psychosocial issues such as social isolation and loneliness, anxiety
    and depression among older adults; and dementia friendly resources and
    programs. We have requested $10.9 million to be included in the next
    emergency package. This is separate from our fiscal year 2021 request
    described below.
        The most resent Notice of Funding Opportunity (NOFO) for geriatrics
    funded 48 GWEP sites and one of their primary responsibilities is to
    educate primary care providers in caring for older adults.
    Unfortunately, each GWEP received about $100,000 less for their
    programs than the first round of grants provided in 2015. Our funding
    request for $51 million would allow for additional GWEP sites in rural
    and underserved communities and for supplemental payments for GWEPs
    that provide additional training for caregivers, including family
    caregivers. This request would also include at least the cost of the
    recent NOFO for 26 GACA Program awards. These two geriatrics programs
    were funded at $40.7 million in fiscal year 2020.
        In fiscal year 2015, HRSA combined the geriatric education programs
    in Titles VII and VIII of the Public Health Service Act, including the
    Geriatric Academic Career Award, as well as portions of the Alzheimer's
    Disease Prevention, Education, and Outreach Program to establish the
    Geriatrics Workforce Enhancement Program (GWEP). The GWEP is one of
    only two Federal programs designed to develop a healthcare workforce
    specifically trained to care for the complex health needs of older
    Americans with the most effective and efficient methods, providing
    higher quality care and saving valuable resources by reducing
    unnecessary costs. As you are aware, the number of Americans ages 65
    and older will double to over 98 million by 2060, creating an
    imperative for policymakers to enhance the education of health
    professionals to improve care of older persons and, thus decrease costs
    of care.
        Proven results from activities under the GWEP and its predecessor
    programs include an important increase in the number of teaching
    faculty with geriatrics expertise in a variety of disciplines, plus
    thousands of healthcare providers and family caregivers better prepared
    to support older Americans with complex chronic conditions. We
    recognize that the Subcommittee faces complex decisions in a
    constrained budget environment, but we believe a top priority should be
    a commitment to geriatric education programs that help the nation's
    health workforce better serve the rapidly increasing number of older
    persons.
        The nation faces a shortage of geriatrics health professionals and
    direct service workers. There are not enough geriatricians, advanced
    practice nurses, and other health professionals with the knowledge,
    skills, and training in geriatrics to meet the needs of our rapidly
    growing population of older adults and to support their family
    caregivers. Too often, the result is expensive walk-in care and
    inappropriate return to hospital within thirty days of discharge. We
    believe that funding for GWEP-based geriatric education supports a
    sustainable future for the nation's healthcare and Social Security
    systems by ensuring that (a) healthcare specialists trained in
    geriatric care do not become an expensive resource from which only a
    select few are able to benefit and (b) direct service workers and
    family caregivers are prepared to support a lower cost, independent
    lifestyle for community residing elders.
        In recent years, GWEPs have continued the impressive work of the
    Geriatric Education Centers. Approximately half of the GWEPs provide
    education for areas that are more than 50 percent rural. In the 2017-
    2018 academic year, GWEPs provided gerontological education to more
    than 49,000 fellows and students. Continuing education for the current
    workforce is another critical part of the program's success with
    212,444 faculty and practicing professionals participated in 1,564
    unique continuing education courses offered by GWEP grantees during
    this period. Saint Louis University and other GWEPs are partnering with
    federally Qualified Health Centers to provide geriatric primary care
    education and didactic training. GWEPs create opportunities for
    healthcare providers in underserved and remote areas of the country to
    consult with top experts in geriatric care through Interactive
    Televideo (ITV), interactive teleconsults, and synchronous webcasts,
    and make available thousands of hours of online geriatric education
    programs.
        The Gateway Geriatric Education Center at Saint Louis University
    has provided education to 25,611 health professionals and 5,904 members
    of the public since 2016. These health professionals have provided
    screenings for geriatric problems such as frailty, sarcopenia (muscle
    weakness), falls, and dementia to 9,280 older adults in all six
    Congressional districts in Missouri. More than 80 percent of this
    trainings and evaluation of older persons were in primary care settings
    and medically underserved communities. Developed specifically for the
    GWEP, the Rapid Geriatric Assessment has been computerized in multiple
    health systems, including Perry County Memorial Hospital in Perryville,
    Missouri, a critical access hospital in rural Perry County, and
    CARESTLHealth, a federally Qualified Health Center in north St. Louis
    city, Missouri. In Perry County, over 25 percent of the older adults in
    the county have been screened using this assessment process. Our
    screenings thus far, have identified 25.4 percent with dementia and
    31.9 percent with falls. Early intervention for these conditions can
    decrease medical costs. Upon identifying concerns in any of the
    assessment areas, older patients are referred for other GWEP-initiated
    services, to include: Cognitive Stimulation Therapy--a non-
    pharmacologic intervention for persons with dementia or Exercise and
    Strengthening programming. In addition, our GWEP has provided education
    through in-person and on-line continuing education, through daily
    tweets on Twitter (@meddocslu)--828, to date--and with 102 postings to
    LinkedIn and Facebook. Our GWEP also co-produced a regional prime time
    television program on aging which was viewed by 340,739 persons. The
    YouTube site has had 103,200 views.
        Obviously, the GWEPs are playing a major role in improving
    healthcare for older adults in the United States. Multiply this by 44
    (the number of existing GWEPs) and you can begin to visualize the scope
    and impact of this program across the nation. It is important to note
    that every GWEP is focused on meeting the needs of rural and/or
    underserved populations; many serve predominantly people of color and
    those who are economically challenged.
        GWEP awardees have received expanded authorization to provide
    family caregivers and direct service workers with instruction on
    prominent issues in the care of older adults, such as Alzheimer's
    Disease and other dementias, palliative care, self-care, chronic
    disease self-management, falls, and maintaining independence, among
    others. In Missouri, we have developed Cognitive Stimulation Therapy
    (CST) aimed at enhancing functioning in persons with moderate
    Alzheimer's disease. We have trained over 1200 persons to deliver this
    intervention and this has led to over 500 persons with dementia
    participating in this effective intervention which our research has
    shown to improve cognition. Our GWEP has recently been designated by
    the founders of CST as the North American CST Training Center.
        HRSA has estimated that more than 50,000 paid and family caregivers
    will participate in GWEP training programs. For example, the GWEP at
    Saint Louis University is partnering with several Area Agencies on
    Aging, the local Alzheimer's Association, a rural hospital, a rural
    osteopathic school, the regional Area Health Education Centers, and
    dementia-focused community care agencies to train staff and family
    caregivers in assessing and supporting them through the caregiving
    process. The 2016 National Academies of Sciences, Engineering, and
    Medicine (NASEM) report Families Caring for an Aging America
    acknowledged that training must go beyond the healthcare professions
    and support family caregivers. This will improve the quality of health
    outcomes while saving valuable resources in the healthcare system.
        In summary, GWEPs have improved the supply, distribution,
    diversity, capabilities, and quality of healthcare professionals who
    care for our nation's growing older adult population, including the
    underserved and minorities. They train physicians, nurses, social
    workers, dentists, mental health professionals, pharmacists, and
    caregivers. In some states, the GWEP is offering training to first
    responders to keep elders safe in their communities. Some of the
    professionals trained through GWEPs will become academicians in
    geriatric medicine, dentistry, psychiatry, nursing, and allied health
    professions, thereby giving additional cohorts of professionals skills
    they need to properly serve older Americans. Furthermore, GWEPs create
    and deliver community-based programs that provide patients, families,
    and caregivers with the skills to care for older adults and improve
    health outcomes, including Alzheimer's disease education. The GWEPs are
    serving as change agents and helping to transform a fragmented and
    outmoded system.
        We ask for your continued support for geriatric programs to
    adequately prepare the next generation of health professionals and care
    providers for the rapidly changing and emerging needs of the growing
    and aging population.
        On behalf of NAGE and those who have benefitted in Missouri and
    from our colleagues around the country, thank you for your thoughtful
    consideration of our request for funding for GWEPs and GACAs in fiscal
    year 2021. NAGE is a non-profit membership organization representing
    GWEPs, Geriatric Education Centers, Centers on Aging, and other
    programs that provide education and training to healthcare
    professionals and others in geriatrics and gerontology.

        [This statement was submitted by John E. Morley, MB, BCh,
    Professor, Division of Geriatric Medicine, Dept. Internal Medicine,
    Saint Louis University School of Medicine, Co-Project Director, Gateway
    Geriatric Workforce Enhancement Program and Marla Berg-Weger, PhD.,
    LCSW, Professor, School of Social Work, Saint Louis University,
    Executive Director, Gateway Geriatric Education Center; Co-Project
    Director, Gateway Geriatric Workforce Enhancement Program.]

                                     ______

                    Prepared Statement of Giese Gayle  deg.
                       Prepared Statement of Gayle Giese
        I am the mother of an adult child with schizophrenia. I would give
    anything to have a cure or at least better treatment for this awful
    brain disease that often leaves its victims in jail, homeless, or
    hospitalized; and destroys families. This serious brain illness is not
    rare as many believe, but affects 1.1 percent of the population and
    that statistic has been true since first recorded, and is basically the
    same throughout the world. Its cause is primarily genetic, but is
    believed to be triggered by environmental factors. Schizophrenia (and
    schizoaffective disorder) robs the person of motivation, concentration,
    and cognition, as well as presenting positive symptoms such as
    hallucinations and delusions. The disease usually occurs in late teen
    or early adult years, just when our bright and beloved children are
    preparing for jobs, universities, careers, serious relationships.
        The National Institute of Mental Health (NIMH) is the main Federal
    Government agency for research into mental illness. The NIMH was
    authorized through the passage of the National Mental Health Act in
    1946 to better help individuals with mental health disorders through
    better diagnosis and treatments. With a budget of almost $2 billion in
    2020, the NIMH conducts research and funds outside investigators to
    better understand mental illness and develop new treatments to reduce
    the burden these disorders have on individuals.
        I beg you to have NIMH prioritize research for the 5 percent of our
    population that has serious mental illnesses that include chronic
    depression (the leading cause of disability in the U.S.), schizophrenia
    (and schizoaffective disorder), and bipolar illness. This makes sense
    because it's the humane thing to do, but it also makes good fiscal
    smarts. The most severe mental illnesses account for the most dollars
    spent in hospitals, jails, prisons, emergency rooms, and services for
    the homeless.
        Dr. E. Fuller Torrey wrote in Psychiatric Times earlier this month:

        ``Congress awarded the National Institute of Mental Health an
            additional $98 million as part of the National Institutes of
            Health budget resolution in December 2019, which brings the
            NIMH budget to just under $2 billion and represents a 35
            percent increase since 2015, one of the largest increases in
            the history of the NIMH. Yet, during the 5 years from 2015
            through 2019, NIMH funded a total of TWO new drug treatment
            trials for schizophrenia and bipolar disorder, according to
            clinicaltrials.gov. This contrasts with the 5-year period from
            2006 through 2010 when NIMH funded 48 such trials . . .''
        In December 2019, the NIMH released a draft of their five-year
    strategic plan for public comment. They reported receiving more than
    6,000 responses identifying examples of research initiatives the NIMH
    could be pursuing today to help people with serious mental illness
    recover and live better lives. Despite this robust response, NIMH made
    no substantive changes to the research goals or objectives in the final
    version released to the public earlier this week.
        The NIMH research goals for 2020-2025 heighten the existing
    imbalance in NIMH research. In doing so, they offer little hope for new
    or better treatments for individuals who are currently afflicted with a
    mental illness during their lifetime, especially a serious mental
    illness. This failure is inexcusable given the large increase in
    research funding given to NIMH in recent years.
        Future NIMH funding must be used to correct the existing imbalance,
    not worsen it, especially now that the COVID-19 pandemic has upended
    the mental health treatment system and will likely result in an
    exacerbation of symptoms in people currently affected and an increase
    in serious mental illnesses among Americans. Those with the most severe
    forms of mental illness deserve to be prioritized.
        Thank you for your consideration,

        Sincerely.
                                     ______

                  Prepared Statement of Global Health Council
        Global Health Council (GHC) is the leading membership organization
    of nonprofits, businesses, universities, and individuals dedicated to
    saving lives and improving the health of people worldwide. GHC thanks
    the Subcommittee for the opportunity to share this testimony in support
    of global health programs under the jurisdiction of the Departments of
    Labor and Health and Human Services. For fiscal year 2021, GHC
    encourages continued support for global health at a minimum of fiscal
    year 2020 levels enacted by Congress. However, in order to achieve U.S.
    global health goals and commitments, we ask that you support a greater
    investment in global health programs for fiscal year 2021, which
    includes at a minimum: $5.808 billion for the National Institute of
    Allergy and Infectious Disease (NIAID), $3.45 billion for the Office of
    AIDS Research, and $84.9 million for the Fogarty International Center
    at the National Institutes of Health (NIH); an investment of $699.3
    million for the Center for Emerging Zoonotic and Infectious Diseases
    and no less than $642 million for the Center for Global Health at the
    Centers for Disease Control and Prevention (CDC).
        In light of the COVID-19 pandemic we must urge Congress to
    appropriate funds not only to sustain America's legacy as a leader in
    global health, but also to support existing programs in their continued
    response to the coronavirus. Recently, Global Health Council
    distributed a letter to Congressional Appropriators advocating for at
    least $5 billion in global health funding to support U.S. global health
    initiatives affected by the COVID-19 pandemic. It is our hope that
    appropriators will consider the additional needs and negative effects
    the COVID-19 pandmeic has had on global health initiatives, when making
    appropriations for fiscal year 2021.
        We know these programs work and have secured their place as some of
    the most cost-effective, critical, and successful tools for U.S. global
    health. They are an essential component of how the United States
    engages with the world. By investing in global health and development,
    the U.S. is continuing to build healthier and more self-reliant
    communities, which ultimately become economically and politically
    stable. Early in 2020, we saw programs struggle to respond to the
    massive need caused by COVID-19. The pandemic exacerbated weak points
    in health systems in rich and poor countries alike, ultimately
    weakening the effectiveness of our own health system. It highlighted
    inequalities, inefficiencies, and a sheer lack of access around the
    world. We are losing ground on the progress that the United States has
    already made towards building healthier and more self-reliant
    communities. A failure to backstop or to ignore these investments would
    roll back the critical progress already made, and eventually undermine
    U.S. foreign policy and global health goals.
        A robust U.S. investment has historically been the foundation for
    increasingly larger contributions from corporations and low- or middle-
    income countries. Without this, global health programs lose access to
    alternative funding sources and technical assistance that ultimately
    enable them to become self-sustaining. Further, global health
    investments benefit the U.S. economy, particularly in research and
    development. Approximately 89 cents of every dollar spent by the U.S.
    government on global health research and development goes directly to
    U.S.-based researchers and product developers. This funding creates
    much-needed jobs, builds U.S. research and technological capacity--a
    boon to the economy as well as the health of Americans who equally
    benefit from such innovation.
        We undeniably live in a global environment. Global health is
    important for medical professionals here at home, too. Every year more
    than 500 million people cross borders in planes, and with them the
    potential for infectious diseases to enter our country, demanding more
    of our health workforce. But U.S.-based providers and other responders
    have the opportunity to learn from health programs abroad about how
    best to tackle diseases whenever they arrive. We have an opportunity
    here, to mobilize everyone involved in health, from scientists,
    pharmaceutical companies, frontline workers, advocates, and
    policymakers, to create a world where health threats can become a thing
    of the past.
        By at the very least maintaining U.S. investment in global health,
    we can continue to build upon the hard work and achievements of
    previous years in order to prevent the persistent global health
    challenges of our time and ensure a healthy future for citizens around
    the world. In our current environment, in response to COVID-19, we must
    consider increasing investments in global health and development
    assistance funding. We have a moral obligation to resolve the
    challenges that U.S. global health programs now face in light of the
    pandemic. And it is in our national interest to demonstrate that these
    are essential commitments.
        Thank you for your consideration of this request.

        [This statement was submitted by Loyce Pace, MPH, President and
    Executive
    Director, Global Health Council.]
                                     ______

         Prepared Statement of the Global Health Technologies Coalition
        On behalf of the Global Health Technologies Coalition (GHTC), a
    group of 30 nonprofit organizations, academic institutions, and aligned
    businesses advancing policies to accelerate the creation of new drugs,
    vaccines, diagnostics, and other tools that bring healthy lives within
    reach for all people, I am providing testimony on fiscal year 2021
    appropriations for the National Institutes of Health (NIH), the Centers
    for Disease Control and Prevention (CDC), and the Biological Advanced
    Research and Development Authority (BARDA). My testimony reflects the
    needs expressed by our members working in nearly one hundred countries
    to develop new and improved technologies for the world's most pressing
    health issues. We appreciate the Committee's support for global health,
    particularly continued research and development (R&D) to advance new
    drugs, vaccines, diagnostics, and other tools for longstanding and
    emerging health challenges-like COVID-19. This pandemic has
    demonstrated again that R&D must be the tip of the spear of our
    response to global health emergencies and that innovation is our exit
    strategy from the economic and social crises spurred by the public
    health containment measures necessitated by our lack of effective
    tools. This reality holds across many everyday emergencies in global
    health-conditions affecting communities around the globe that cause
    suffering and death often absent from the headlines.
        As the subcommittee considers fiscal year 2021 appropriations in
    light of this crisis, to accelerate progress towards life-saving tools
    for the full range of emerging and enduring global health threats, we
    respectfully request maintaining robust funding for NIH, particularly
    the National Institute for Allergy and Infectious Diseases (NIAID) and
    the Fogarty International Center; providing funding to match CDC's
    growing responsibilities in global health and global health security,
    at minimum level funding of $570.8 million for the Center for Global
    Health (CGH) and $635.8 million for the National Center for Emerging
    Zoonotic and Infectious Diseases (NCEZID); and supporting funding for
    BARDA's critical work in emerging infectious diseases. GHTC members
    strongly believe that sustainable investment in R&D for a broad range
    of neglected diseases and health conditions is critical to tackling
    both longstanding and emerging global health challenges that impact
    people around the world and in the United States. This means investing
    between and beneath global health crises: both for rapid innovation for
    emerging infectious diseases when they strike and to enable continued
    progress on less visible but life-saving, decades-long efforts to
    combat persistent challenges like HIV/AIDS, tuberculosis (TB), and
    malaria.
        Coordination is also key: We urge the Committee to request that
    leaders of the Department of Health and Human Services (HHS) agencies
    work with counterparts at the State Department and the United States
    Agency for International Development to develop a cross-government
    global health R&D strategy to ensure that U.S. investments are
    efficient, coordinated, and streamlined. Operation Warp Speed is an
    audacious effort to combine the unique strengths of several U.S.
    agencies, the U.S. military, and private-sector partners with the goal
    of producing 300 million COVID-19 vaccine doses by January of next
    year. This unique whole-of-government effort to combat this global
    health emergency provides an inspiring model that could be replicated
    to dramatically accelerate progress against other persistent global
    health threats and leave us better prepared for the next health
    emergency.
        With supplemental funding afforded in emergency COVID-19 relief
    bills, NIH, CDC, and BARDA have moved at historic speed to launch
    research partnerships and support product development to combat COVID-
    19. In just a few months, these agencies have begun advancing more than
    50 innovations, including at least 20 diagnostics, 16 therapeutics, and
    7 vaccine candidates. The pandemic has spurred an unprecedented
    scientific response, enabled by a U.S. biomedical research
    infrastructure primed and ready to act thanks to a decade of historic
    investment by this subcommittee. These foundational investments have
    enabled products to be developed and rolled out much faster than in
    previous health emergencies. For example, it took researchers about 5
    months to even identify the SARS virus after it was already spreading
    in 2003. COVID-19 was sequenced in just weeks with work on vaccines and
    diagnostics launched soon after. Our ability to mount this rapid
    response is a testament to the strengthening of our biomedical research
    infrastructure enabled by forward-thinking investment.
        While COVID-19 demands our immediate attention and accelerated
    efforts, the everyday emergencies of persistent health threats continue
    to threaten communities around the globe. Though we have made
    tremendous gains in global health over the past fifteen years, millions
    of people around the world are still threatened by HIV/AIDS, TB,
    malaria, and other neglected diseases and conditions. In 2018, TB
    killed 1.5 million people, surpassing deaths from HIV/AIDS, while 1.7
    million people were newly diagnosed with HIV. Nearly half the global
    population remains at risk for malaria, and drug-resistant strains are
    growing. Women and children remain the most vulnerable with around 80
    percent of all global maternal and child deaths occurring in sub-
    Saharan Africa and 1 out of every 13 children in the region dying
    before the age of 5, often from vaccine-preventable and other
    communicable diseases. These figures highlight the tremendous global
    health challenges that remain and the need for sustained investment in
    global health R&D to deliver new tools to combat endemic and emerging
    threats. New tools and technologies are also critical to address
    challenges of drug resistance, outdated and toxic treatments, and
    difficulty administering current health technologies in poor, remote,
    and unstable settings.
        The COVID-19 pandemic has demonstrated once again that we do not
    readily have all the tools needed to tackle many neglected and emerging
    infectious diseases--a reality brought into sharp focus during the Zika
    and West African Ebola epidemics just a few years ago. Yet, the impact
    of the rVSV-ZEBOV Ebola vaccine on the now-waning epidemic in the
    Democratic Republic of the Congo (DRC) demonstrates the power of having
    the right tool at the right time to respond to a health emergency. This
    new vaccine, developed with critical funding from NIH and other U.S.
    Government partners, is 97.5 percent effective--a game-changer for this
    and future outbreaks. As part of the rapid research response to COVID-
    19, the U.S. Government and global partners are leveraging past
    investments in R&D for other global health threats to advance
    innovations for COVID-19. For instance, a vaccine development platform
    originally developed to advance vaccine candidates for HIV/AIDS is
    being repurposed to develop COVID-19 vaccine candidates, and an
    emergency use authorization was recently granted to Remdesivir, a
    broad-spectrum antiviral compound originally developed as an Ebola and
    Marburg virus treatment that is now showing promise as a COVID-19
    therapeutic. The United States is at the forefront of COVID-19
    innovation today because of past investments in NIH, CDC, and BARDA.
        NIH: The groundbreaking science conducted at NIH has long upheld
    U.S. leadership in medical research. Within NIH, NIAID, the Office of
    AIDS Research, and the Fogarty International Center all play critical
    roles in developing new health technologies that save lives at home and
    around the world. Recent activities have led to the creation of new
    tools to combat neglected diseases, including vaccines for dengue and
    trachoma, new drugs to treat malaria and TB, and multiple tools for
    Ebola. Leadership at NIH has long recognized the vital role the agency
    plays in global health R&D and has named global health as one of the
    agency's top five priorities.
        Today, NIH is leading U.S. R&D for COVID-19, supporting at least 17
    vaccine, therapeutic, and diagnostic candidates, and, with emergency
    supplemental funding, rapidly identifying new candidates to support.
    Thanks to research investments in response to the SARS and MERS
    outbreaks, NIAID scientists and partners are better prepared to develop
    diagnostics, therapeutics, and vaccines for COVID-19. It remains
    critical that support for NIH considers all pressing areas of research-
    including research in neglected and emerging infectious diseases.
        CDC: CDC also makes significant contributions to global health
    research, particularly through CGH and NCEZID. CDC's ability to respond
    to disease outbreaks is essential to protecting the health of citizens
    both at home and abroad, and the work of its scientists is vital to
    advancing the development of tools, technologies, and techniques to
    detect, prevent, and respond to urgent public health threats. Important
    recent global health contributions by NCEZID includes innovative
    technologies to provide a rapid diagnostic test for the Ebola virus, a
    new vaccine to improve rabies control, and a new diagnostic test for
    dengue virus. The center also plays a leading role in the National
    Strategy for Combating Antibiotic-Resistant Bacteria to prevent,
    detect, and control outbreaks of antibiotic-resistant pathogens, such
    as drug-resistant TB. NCEZID was instrumental in the development of the
    first COVID-19 diagnostic used in the U.S., and their Office of
    Advanced Molecular Detection is leading the SARS-CoV-2 Sequencing for
    Public Health Emergency Response, Epidemiology and Surveillance
    (SPHERES) initiative, a new national genomics consortium to coordinate
    SARS-CoV-2 sequencing across the country that will provide crucial
    information to track the spread of the virus and identify diagnostic
    and therapeutic product targets.
        Programs at CDC's CGH--including the Divisions of Global HIV and
    TB, Global Immunization, Parasitic Diseases and Malaria, and Global
    Health Protection--have also yielded tremendous results in the
    development and refinement of vaccines, drugs, microbicides, and other
    tools to combat HIV/AIDS, TB, malaria, and neglected tropical diseases
    like leishmaniasis and dengue fever. CGH develops and validates
    innovative tools for use by U.S. bilateral and multilateral global
    health programs and leads laboratory efforts to monitor and combat drug
    and insecticide resistance--functions essential to ensuring that global
    health programs are responsive, efficient, and tailored for maximum
    impact.
        As global disease outbreaks have grown in frequency and intensity,
    CDC's work in novel technology development and global health security
    has only become more important. This includes the agency's efforts to
    quash the most recent Ebola outbreak in DRC through its international
    leadership on the Global Health Security Agenda (GHSA). GHTC supports
    the funding increase to the Division of Global Health Protection (DGHP)
    within CGH proposed by the Administration for fiscal year 2021 and
    urges the Committee to continue annual increases to this and other
    accounts critical to global health security-related R&D. As shown
    through COVID-19 and the still-recent epidemics of Ebola and Zika,
    these functions are being called upon with greater frequency and are
    critical to protecting the health of Americans and the health of people
    around the world. CDC monitors 30 to 40 international public health
    threats each day, has identified disease outbreaks in over 150
    countries, responded to over 2,000 public health emergencies, and
    discovered 12 previously unknown pathogens. We also urge increased
    funding for NCEZID, which supports DGHP's response efforts globally
    with laboratory expertise.
        BARDA: BARDA plays an unmatched role in global health R&D by
    providing an integrated, systematic approach to the development and
    purchase of critical medical technologies for public health
    emergencies. By leveraging unique contracting authorities and targeted
    incentive mechanisms, BARDA partners with diverse stakeholders from
    industry, academia, and nonprofits to bridge the valley of death
    between basic research and advanced-stage product development for
    medical countermeasures--an area where more traditional U.S. Government
    research programs do not operate. With these unique assets, BARDA has
    played a vital role in the development of urgently needed
    countermeasures for pandemic influenza, antimicrobial resistance, and
    emerging infectious diseases (EIDs), like Ebola and Zika. Today,
    BARDA's unique strengths are on full display in its response to COVID-
    19. The agency has received supplemental resources many times its
    annual base appropriation to advance medical countermeasures for the
    pandemic, and is moving at unprecedented speed to use these resources
    to advance more than 30 products to diagnose, treat, and prevent COVID-
    19.
        To date, BARDA's work in advancing tools to protect against the
    threat of EIDs has largely been supported through emergency funding,
    and today it is being forced to curtail critical work on a range of
    naturally occurring threats to focus on COVID-19. A dedicated funding
    line for EIDs would ensure that they are resourced for a wide range of
    future threats and would prevent delays like those seen between the
    onset of the COVID-19 pandemic and the first BARDA awards made with
    supplemental funding. In a public health emergency, science cannot
    wait, and we must ensure our research agencies have a funding pipeline
    ready to resource innovation for the next threat as soon as it is
    identified.
        In addition to bringing lifesaving tools to those who need them
    most, investment in global health R&D is also a smart economic
    investment for the United States, with 89 cents of every US dollar
    invested in global health R&D going directly to U.S.-based researchers.
    U.S. Government investment in global health R&D between 2007 and 2015
    generated an estimated 200,000 new jobs and $33 billion in economic
    growth. As the COVID-19 crisis is demonstrating, investments in global
    health R&D today can help achieve significant cost-savings and mitigate
    the economic impact of outbreaks in the future.
        It bears repeating: innovation is our exit strategy for COVID-19
    and we will not be safe from the pandemic in the United States until we
    end it everywhere. HHS research agencies advancing COVID-19 innovations
    should be encouraged to assess whether and how such products might be
    adapted for use in low-resource settings, where electricity is limited
    or delivery methods such as intravenous administration are not always
    feasible. Furthermore, as we continue to focus our immediate energies
    on combatting this global pandemic, we must also work to ensure that
    research on other critical global health issues is not sidelined
    indefinitely--investment will be needed to restart clinical trials,
    extend participant enrollment, and shore up critical research
    infrastructure through the eye of this storm and in the aftermath of
    this public health emergency.
        At this time of crisis, Congress must make forward-thinking choices
    to respond to the emergency before us and draw on the painful lessons
    emerging from it to ensure that we are primed and ready for the next
    health threat--while also committing to continue progress against the
    full range of global health challenges. Global health research, which
    improves the lives of people around the world while supporting U.S.
    interests and health security, creating jobs, and spurring economic
    growth, is a win-win investment.

        [This statement was submitted by Jamie Bay Nishi, Director, Global
    Health
    Technologies Coalition.]
                                     ______

                    Prepared Statement of Global Water 2020
        With COVID-19 dominating the news, the importance of handwashing is
    front and center as one of the only effective ways of preventing
    infection. Both the Centers for Disease Control and Prevention (CDC)
    and the U.S. Surgeon General have touted the importance of washing your
    hands. More broadly, access to safe drinking water, sanitation, and
    hygiene (including handwashing), or WASH, is one of the first lines of
    defense in slowing the spread of most infectious disease outbreaks such
    as the flu and Ebola, as well as protecting communities, patients, and
    frontline health workers over the long-term. For this reason, Global
    Water 2020 recommends funding the Global WASH program within the Center
    for Global Health (CGH) and the National Center for Emerging and
    Zoonotic Infectious Diseases (NCEZID) at CDC at $10 million for fiscal
    year 2021. In addition, we support overall funding for the Center for
    Global Health at $642 million and the National Center for Emerging and
    Zoonotic Infectious Diseases at $699.3 million. Both of these Centers
    support global WASH programs at the agency.
        The CDC Global WASH program works to address the impact of WASH-
    related diseases such as cholera, hepatitis, and typhoid fever, by
    improving access to safe water, adequate sanitation, and improved
    hygiene in communities, schools, and healthcare facilities. CDC works
    to identify and scale up the most effective WASH interventions, using
    proven technologies to treat and safely store drinking water in homes,
    schools, and healthcare facilities, and the integration of sanitation
    and hygiene programs in schools and communities.
        To accomplish this work, CDC partners with other U.S. government
    agencies, non-governmental organizations, Ministries of Health, and
    other international organizations. Through these partnerships, CDC
    provides the technical backbone to better understanding water-borne
    pathogens and assists countries with establishing sustainable and
    country-led WASH services.
        In addition, the Global WASH program is critical to CDC's work to
    advance the U.S. Global Health Security Strategy, as well as U.S.
    commitments to the Global Health Security Agenda (GHSA). Investing in
    WASH, and more broadly health systems, puts in place preventative
    measures that help countries to better prevent, detect, and respond to
    infectious disease outbreaks. WASH also plays a role in combatting the
    rise of ``superbugs,'' or drug-resistant diseases, by preventing
    infections and lowering the need to use antibiotics.
        However, there is a dangerous lack of WASH in many healthcare
    facilities around the world. One in four healthcare facilities lacks
    basic water services, one in five has no sanitation services, and two
    in five lack basic hand hygiene services. So during a time when people
    are encouraged to wash their hands to prevent the spread of the
    coronavirus, there are frontline health workers and other healthcare
    professionals, as well as patients, who are unable to do so. We also
    saw this during the Ebola epidemic in West Africa, where the lack of
    access to safe WASH in healthcare facilities and communities was a
    factor in the inability to contain the disease. And the lack of WASH in
    many healthcare facilities during this outbreak puts patients seeking
    routine services such as neonatal care at risk of infection.
        Currently, CDC does not receive dedicated and consistent funding
    for the Global WASH program. The ongoing COVID-19 outbreak and the
    focus on the importance of handwashing underscore the critical need to
    ensure that CDC can continue this work without worrying about where
    funding will come from every fiscal year.
        Specifically, $10 million could ensure that CDC's global WASH
    program could continue its work on:
      --Improving access to WASH in healthcare facilities to prevent
            disease outbreaks and the overuse of antibiotics through better
            infection prevention and control;
      --Strengthening CDC's work to control or eliminate Neglected Tropical
            Diseases (NTDs) that are exacerbated by inadequate WASH; and
      --Continuing CDC's work towards eliminating cholera as a public
            health threat.
        In addition, this request will help maintain CDC's efforts to
    identify the most effective WASH interventions and provide technical
    assistance in scaling up those interventions. And by leveraging the
    WASH investments made by USAID, multilateral banks, and non-
    governmental organizations, CDC is helping to make WASH interventions
    more efficient and sustainable.
        We highly recommend that funding for the Global WASH program be new
    funding and not taken from existing programs at CDC.
        Making investments in WASH now is critical to putting in place
    preventive measures that can slow the spread of the next novel
    coronavirus, Ebola outbreak, or the yet to be identified disease X and
    perhaps prevent multi-billion dollar emergency supplementals in the
    future. Access to WASH services is critical to protecting the health,
    well-being, and resilience of individuals and communities. WASH is one
    of the most cost-effective interventions available for improving global
    health and development, which leads to more resilient and prosperous
    communities.

        [This statement was submitted by Danielle Heiberg, Advocacy
    Advisor, Global Water 2020.]

                                     ______

                  Prepared Statement of Gutierrez Linda  deg.
                     Prepared Statement of Linda Gutierrez
        My brother was diagnosed with Schizophrenia when he was 16 years
    old, he is 62 now. His life from adolescence through adulthood has been
    consumed by mental illness. His dreams and ambitions were never
    fulfilled. I would give anything to have a cure or at least better
    treatment for this awful brain disease that often leaves its victims in
    jail, homeless, or hospitalized; and destroys families. This serious
    brain illness is not rare as many believe, but affects 1.1 percent of
    the population and that statistic has been true since first recorded,
    and is basically the same throughout the world. Its cause is primarily
    genetic, but is believed to be triggered by environmental factors.
    Schizophrenia (and schizoaffective disorder) robs the person of
    motivation, concentration, and cognition, as well as presenting
    positive symptoms such as hallucinations and delusions.
        The National Institute of Mental Health (NIMH) is the main Federal
    Government agency for research into mental illness. The NIMH was
    authorized through the passage of the National Mental Health Act in
    1946 to better help individuals with mental health disorders through
    better diagnosis and treatments. With a budget of almost $2 billion in
    2020, the NIMH conducts research and funds outside investigators to
    better understand mental illness and develop new treatments to reduce
    the burden these disorders have on individuals.
        I beg you to have NIMH prioritize research for the 5 percent of our
    population that has serious mental illnesses that include chronic
    depression (the leading cause of disability in the U.S.), schizophrenia
    (and schizoaffective disorder), and bipolar illness. This makes sense
    because it's the humane thing to do, but it also makes good fiscal
    smarts. The most severe mental illnesses account for the most dollars
    spent in hospitals, jails, prisons, emergency rooms, and services for
    the homeless.
        Dr. E. Fuller Torrey wrote in Psychiatric Times earlier this month:

        ``Congress awarded the National Institute of Mental Health an
            additional $98 million as part of the National Institutes of
            Health budget resolution in December 2019, which brings the
            NIMH budget to just under $2 billion and represents a 35
            percent increase since 2015, one of the largest increases in
            the history of the NIMH. Yet, during the 5 years from 2015
            through 2019, NIMH funded a total of TWO new drug treatment
            trials for schizophrenia and bipolar disorder, according to
            clinicaltrials.gov. This contrasts with the 5-year period from
            2006 through 2010 when NIMH funded 48 such trials . . .''
        In December 2019, the NIMH released a draft of their five-year
    strategic plan for public comment. They reported receiving more than
    6,000 responses identifying examples of research initiatives the NIMH
    could be pursuing today to help people with serious mental illness
    recover and live better lives. Despite this robust response, NIMH made
    no substantive changes to the research goals or objectives in the final
    version released to the public earlier this week.
        The NIMH research goals for 2020-2025 heighten the existing
    imbalance in NIMH research. In doing so, they offer little hope for new
    or better treatments for individuals who are currently afflicted with a
    mental illness during their lifetime, especially a serious mental
    illness. This failure is inexcusable given the large increase in
    research funding given to NIMH in recent years.
        Future NIMH funding must be used to correct the existing imbalance,
    not worsen it, especially now that the COVID-19 pandemic has upended
    the mental health treatment system and will likely result in an
    exacerbation of symptoms in people currently affected and an increase
    in serious mental illnesses among Americans. Those with the most severe
    forms of mental illness deserve to be prioritized.
        Thank you for your consideration,

        Sincerely.
                                     ______

                        Prepared Statement of Head Start
        Dear Chairman Blunt, Ranking Member Murray, and Members of the
    Subcommittee,
        On behalf of the Head Start community, thank you for the
    opportunity to submit written testimony regarding funding for Head
    Start and Early Head Start (collectively referred to as ``Head Start'')
    in fiscal year 2021. For 55 years, Head Start has provided early
    learning opportunities for our country's most vulnerable children and
    comprehensive support to families that address long-term economic
    stability and better health prospects, ultimately mitigating the
    devastating impacts that poverty can have on the future success of
    young children. As a community, we are grateful for the Subcommittee's
    tradition of strong bipartisan support for Head Start and its
    leadership on issues related to children and families. This
    Subcommittee has been a tremendous advocate for Head Start, Early Head
    Start, and other programs that give hardworking families sustained,
    unmatched support, providing the chance for children not just to
    succeed in school but to thrive in life. In light of the COVID-19
    pandemic, we would like to thank you for the immense amount of time and
    effort that you have put into ensuring that children and families'
    needs are met as the impact in local communities continues to take
    shape. To build on these critical successes, the National Head Start
    Association (NHSA) recommends $11,369,445,000 in Head Start funding for
    fiscal year 2021.
        My personal journey with Head Start began over 30 years ago. I was
    teaching in the elementary schools when I took a summer job with a
    Community Action Program in Iowa. By the end of that summer, I had
    accepted a job as an Education Coordinator for Head Start. Really, Head
    Start found me and set my trajectory in motion. Because of my
    employment with Head Start, I was able to finish a master's degree in
    education and pursue a doctoral degree in organizational leadership.
    Now, I have been the Head Start program director at Douglass Community
    Services (DCS) in Hannibal, Missouri for more than 15 years.
        Everyone says, 'Head Start gets into your blood,' and it is true. I
    quickly grew to love Head Start's intergenerational approach. From the
    beginning, my work has been inspired by watching families define
    success for themselves and then going on to achieve it. I have seen
    many parents in our program earn their degrees and start careers. Many
    chose nursing school, and now, one of our former parents is the head
    emergency room nurse at our local hospital. All across our community,
    Head Start parents are stepping up as heroes right now. In all my years
    with Head Start, many things have changed, but one constant is seeing
    the success of families, and that is why I am still here more than 30
    years later.
        Our staff are the engine of the work we do. At DCS, we employ 140
    people-teachers, nurses, managers, and mental health specialists. Every
    year, we compete with our local school districts to keep the qualified,
    quality staff who we have trained and invested in. We, our program and
    our families, need our teachers' skill and passion for educating
    children, but year after year, it is a challenge to compete with public
    schools that can offer better compensation and benefits. At DCS, we
    prioritize offering creative, robust benefits to stay competitive with
    the local school districts, but supporting our workforce requires so
    much more.
        While further financial investment in our workforce is crucial, we
    have also addressed staff turnover by creating an apprenticeship
    program, which has been beneficial for our whole community. When our
    CEO Stephanie Cooper came to DCS 5 years ago, we were able to start
    building our career and professional development program. We knew that
    if staff could see their work in Head Start as part of a career path,
    the work would get in their blood just like it did mine.
        The apprenticeship program is a career ladder that allows teachers
    to grow within Head Start. We were the first Head Start program, and
    the first program of any kind in our community, to establish an
    official apprenticeship program. With the help of community partners
    and the whole-hearted support of the DCS team, we have seen incredible
    success with the apprenticeship program. Now, many of our staff have
    been with us for a number of years, and many have earned CDAs and
    degrees and stayed with us. Each year, DCS depends on Congress to be
    able to provide small increases to our staff to incentivize them to
    stay with us. For fiscal year 2021, Head Start requests that Congress
    maintains its strong history of providing this critical cost-of-living
    adjustment to Head Start that can help maintain services as the costs
    of business increase. These investments have exponential benefits for
    the continuity of our workforce and for the outcomes of our children
    and families.
        Another development in recent years is the way we have changed our
    mental health practices in response to new and evolving needs within
    our community. Knowing that many of our children have experienced
    trauma and understanding the possible lifelong effects of adverse
    childhood experiences, we shifted our practices to a trauma-informed
    approach. Our staff now approach children's challenging behaviors with
    the understanding that they may be coping with the effects of trauma,
    and we work with them to understand their emotions and behaviors. As a
    part of this intensive effort, we decreased class sizes, so that
    teachers in the classroom have the opportunity to build trusting
    relationships with all children.
        These efforts do not end with the children who we serve. Our
    trauma-informed mindset extends to our interactions with parents and
    with one another on the DCS team. By simply asking parents,'How are you
    doing today?' when they walk in our doors, and really listening, we are
    building relationships and empowering them to be the best parents they
    can be. When we provide trauma-related training for parents and staff,
    we work hard to make it feel not like a training, but instead, a
    strengths-based conversation. Parents are their children's first and
    most important teachers, and we want them to know how valued they are.
        One of our parents, Jessika, is a 30-year-old mother of four
    children and has been with Head Start for a little over 4 years.
    Jessika shared what she learned and applied to her own life from Trauma
    Smart, the trauma-informed care curriculum provided by DCS Head Start.
    Having spent her youth in 23 foster homes, she was still in foster care
    at age 16 when she became pregnant. She was blessed to have a foster
    mom who was willing to keep her and her baby, so she did not have to
    give her first child up for adoption. She shared that our Trauma Smart
    program helped her learn a lot about herself and identify that it was
    the trauma she had experienced early in life that was leading her
    behaviors as an adult.
        In Trauma Smart, we learn the analogy of the brain as a car. When
    you feel that you are in control of decisions, can solve problems, and
    regulate your emotions, you are in the front seat. In the back seat,
    you are in an emotional state, and when you are in the trunk, you are
    in a survival mode of fight, flight, or freeze. Jessika stated that
    through training she realized that she had spent most of her life ``in
    the trunk,'' so much of it in fact that although it did not feel good,
    it felt safe.
        She shared that the training took her through a healing process,
    where she could let go of the fear of moving from the safety of her
    trunk and to see things through the eyes of others, including the eyes
    of her own kids. In talking with me about her experience with Trauma
    Smart, she ended by saying, ``I realized I was a broken adult, and I
    was tired of just surviving.'' She keeps her training materials by her
    bedside and refers to them often. Through her progress with Trauma
    Start, Jessika has a new-found confidence and has set positive goals
    for herself and her family. She is taking college courses with the goal
    of completing a bachelor's degree. She knows that she is a much better
    parent and can see changes in her children's behaviors that will make
    them much more successful as well.
        The trauma training we provide also builds a sense of camaraderie
    among our staff that enables them to support each other, and this work
    reminds us that we are doing more than going into a classroom and
    teaching: we are making a substantial impact in children's lives. We
    made these intentional changes in Hannibal long before much of the talk
    about trauma-informed care began, and we are glad such practices are
    reaching many more Head Start children and families today. That said,
    we know that there is so much more that could be done, here in Hannibal
    and in Head Start programs across the country working to provide the
    interventions needed for children to succeed in school and later in
    life. In fiscal year 2021, the Head Start community is seeking an
    increase of $495 million in quality improvement funding, so that even
    more children and families can see the benefits of services like our
    trauma intervention.
        Today, as we watch our communities adapt to respond to COVID-19,
    children and families are facing new challenges and need Head Start
    more than ever. With stay-at-home orders in place, Head Start programs
    have continued to operate remotely, serving the needs of both children
    and caregivers with delivery of food and sanitation supplies, provision
    of learning materials, and virtual home visits. While there has long
    been an urgent need to respond to children and families' mental health
    needs, COVID-19 has dramatically compounded those needs.
        While operating completely remotely, technology has become one of
    our greatest areas of need, for both families and our DCS staff. For
    our staff without home Internet access, we purchased hotspots. We have
    also purchased track phones for teachers to stay in contact with
    families. But the need for better technology is still there. Even if we
    could get devices for every family, it would not be much use for those
    without Internet, unlimited data plans, or cell service. Head Start is
    the option for families in our area, and meeting the needs that stem
    directly from COVID-19 is critical if we are going to be able to
    fulfill our mission of sending children to kindergarten prepared.
        Nationwide, there are roughly 1,600 Head Start grantees that serve
    more than one million children and pregnant mothers each year and a
    workforce of more than 270,000 Head Start staff who partner with those
    children and families. As you make difficult decisions around fiscal
    year 2021, I ask that you keep them in mind--the members of the early
    childhood workforce who are such strong pillars in our programs and our
    communities, who step up in times of crisis with selfless, untiring
    commitment to the betterment of our community, innovative ideas to meet
    our families' needs, and unending compassion. I ask that you keep in
    mind the parents, like Jessika, who thrive through Head Start and the
    children who depend on Head Start to arrive at kindergarten with a love
    of learning and a readiness to succeed.
        Above all, please remember that trauma does not go away. Trauma was
    on the rise in the communities that Head Start serves before COVID-19,
    and soon, we will see the effects of the trauma brought on by the
    pandemic. Our efforts to address challenges stemming from trauma, faced
    by our communities are not slowing down either. I ask you to remember
    that the Quality Improvement Funds that came in fiscal year 2020 fuel
    this unending work, and I urge you to consider just how critically
    important it is that the trauma intervention services funded through
    QIF are sustained as our community meets new challenges.
        Thank you for your consideration.

        Sincerely.

        [This statement was submitted by Linda Bleything, Director,
    Douglass
    Community Services Head Start & Early Head Start.]
                                     ______

                    Prepared Statement of Healing Minds NOLA
        Healing Minds NOLA, is a non-profit organization based in New
    Orleans, Louisiana. Our mission is to explore and create alternatives
    to incarceration, homelessness and death for people living with
    untreated and undertreated severe mental illnesses. We appreciate the
    opportunity to provide written testimony regarding the National
    Institute of Health fiscal year 2021 budget appropriations.
        Over the years, Americans have witnessed the steady decline of
    long-term support programs and services for people with chronic,
    debilitating severe mental illnesses. Despite the lifetime care needs
    of people with mental diseases, a large percentage of people go without
    treatment every year.
        ``Based on 2016 population numbers, the analysis found the
    following: 8.2 million U.S. adults had schizophrenia or severe bipolar
    disorder at the combined NIMH prevalence rate of 3.3 percent. 3.9
    million people with these diseases were untreated at any given time
    during the year'' \1\
    ---------------------------------------------------------------------------
        \1\ https://www.treatmentadvocacycenter.org/fixing-the-system/
    features-and-news/3828-research-weekly-2016-prevalence-of-treated-and-
    untreated-severe-mental-illness-by-state.
    ---------------------------------------------------------------------------
        Many exist within a never-ending system of crisis care--being
    shuffled between the revolving doors of ERs, hospitals, jails, shelters
    and various states of homelessness. 40-50 percent are treatment non-
    adherent \2\ due to Anosognosia, defined as a deficit of self-
    awareness, a condition in which a person with a disability is unaware
    of having it.\3\ It is highly unlikely that anyone would seek treatment
    and care for an illness they didn't have.
    ---------------------------------------------------------------------------
        \2\ https://www.treatmentadvocacycenter.org/key-issues/anosognosia/
    3628-serious-mental-illness-and-anosognosia.
        \3\ https://en.wikipedia.org/wiki/Anosognosia.
    ---------------------------------------------------------------------------
        Anosognosia is just one syndrome associated with severe mental
    illness that we see on a regular basis. Other barriers to care include
    negative attitudes toward medication due to side effects. Consequences
    of non-adherence include poor quality of life or psycho-social
    outcomes, relapse of symptoms, increased co-morbid medical conditions,
    wastage of healthcare resources, and increased suicide.\4\
    ---------------------------------------------------------------------------
        \4\ https://www.dovepress.com/why-do-psychiatric-patients-stop-
    antipsychotic-medication-a-systematic-peer-reviewed-fulltext-article-
    PPA.
    ---------------------------------------------------------------------------
        To mitigate the enormous humanitarian and economic costs of
    untreated and under-treated severe mental illness, now is the time to
    increase support for drug trials and treatments for schizophrenia,
    bipolar disorder, and major depressive disorder. Better medications
    with less side-effects and evidence-based treatments would do much to
    end the suffering for people who struggle with mental diseases.
        Given that the NIMH has failed to prioritize funds for the most at-
    risk and vulnerable mentally ill population,\5\ we urge the United
    States Senate Subcommittee on Labor, Health and Human Services, and
    Education, and Related Agencies to require it.
    ---------------------------------------------------------------------------
        \5\ https://www.psychiatrictimes.com/article/riches-abound-so-
    where-are-trials-schizophrenia-and-bipolar-disorder.
    ---------------------------------------------------------------------------
        Thank you for your consideration of this matter.

        [This statement was submitted by Janet Hays, Director, Healing
    Minds NOLA.]
                                     ______

               Prepared Statement of the Health Professions and
                          Nursing Education Coalition
        The Health Professions and Nursing Education Coalition (HPNEC) is
    an alliance of 80 national organizations representing schools,
    students, health professionals, and communities dedicated to ensuring
    that the healthcare workforce is trained to meet the needs of our
    diverse population. Together, the members of HPNEC advocate for
    adequate and continued support for the health professions and nursing
    workforce development programs authorized under Titles VII and VIII of
    the Public Health Service Act and administered by the Health Resources
    and Services Administration (HRSA). For fiscal year 2021, HPNEC
    encourages the subcommittee to adopt at least $790 million for HRSA
    Titles VII and VIII programs.
        HRSA's Title VII health professions and Title VIII nursing
    workforce development programs are structured to allow grantees to test
    educational innovations, respond to changing delivery systems and
    models of care, and timely address health threats, such as COVID-19.
    Titles VII and VIII programs are structured to respond to changing
    delivery systems and models of care, such as telehealth, while
    addressing immediate health threats in all communities. Through
    scholarships, loan repayment programs, grants, and contracts to
    academic institutions, students, and non-profit organizations, HRSA's
    workforce development programs address health threats in all
    communities by filling the gaps in the supply of health professionals
    not met by traditional market forces.
        As our population grows, ages, and becomes increasingly diverse,
    our health professions workforce must adapt to the ever-changing health
    needs of patients from all backgrounds in communities across the
    country. Now more than ever support is needed for Title VII and Title
    VIII programs that improve the supply, distribution, and diversity of
    the workforce--to ensure health professionals are prepared to address
    the healthcare challenges of today and the future.
        Public Health.--Public Health Workforce Development trains
    America's public health workforce to identify underlying causes of
    health issues, new disease strains, health disparities, and other
    public health issues vital to the country's response to any pandemic.
    These programs support education and training in public health and
    preventive medicine through different initiatives, including the only
    funding for physicians to work in state and local departments of
    health. In AY 2018-2019, Public Health Workforce grantees delivered
    unique continuing education courses more than 226,500 practicing
    professionals in the workforce.
        Diversity Pipeline Programs.--Title VII and Title VIII programs
    play an essential role in improving the diversity of the health
    workforce and connecting students to healthcareers by supporting
    recruitment, education, training, and mentorship opportunities. With
    public health issues, such as COVID-19, disproportionately impacting
    racial and ethnic minorities, these programs recruit and train a
    diverse and culturally competent health workforce, tasked to mitigate
    health disparities.
        Diversity programs include the Health Careers Opportunity Program
    (HCOP), Centers of Excellence (COE), Faculty Loan Repayment, Nursing
    Workforce Diversity, and Scholarships for Disadvantaged Students (SDS).
    Studies have demonstrated the effectiveness of such pipeline programs
    in strengthening students' academic records, improving test scores, and
    helping minority and disadvantaged students pursue careers in the
    health professions. Title VII diversity pipeline programs reached over
    10,000 students in the 2018-2019 academic year (AY), with SDS
    graduating nearly 1,400 students and COE reaching more than 5,600
    health professionals; 56 percent of which were located in medically
    underserved communities.
        Title VIII's Nursing Workforce Diversity Program increases nursing
    education opportunities for individuals from disadvantaged backgrounds,
    through stipends and scholarships, and a variety of pre-entry and
    advanced education preparation. In AY 2018-19, the program supported
    more than 11,000 students, with approximately 46 percent of the
    training sites located in underserved communities
        Primary Care Workforce.--The Primary Care Medicine Programs expand
    the primary care workforce, including general pediatrics, general
    internal medicine, family medicine, and physician assistants through
    the following programs: Primary Care Training and Enhancement (PCTE);
    academic units for PCTE; PCTE: Training Primary Care Champions; and
    Primary Care Medicine and Dentistry Career Development. The Primary
    Care programs are also intended to encourage health professionals to
    work in underserved areas. In AY 2018-2019, 61 percent of PCTE programs
    were located in medically underserved communities and 30 percent in
    rural areas.
        The Medical Student Education program, which supports the
    healthcare workforce by expanding training for medical students to
    become primary care clinicians, targets institutions of higher
    education in states with the highest primary care workforce shortages.
    By providing grants to institutions, the program develops partnerships
    among institutions, federally recognized tribes, and community-based
    organizations to train medical students to provide primary care that
    improves health outcomes for those living in rural and other
    underserved communities.
        Interdisciplinary, Community Based Linkages.--Support for
    community-based training of health professionals in rural and urban
    underserved areas is funded through Title VII. By assessing the needs
    of the local communities they serve, Title VII programs can fill gaps
    in the workforce and increase access to care for all populations. The
    programs emphasize interprofessional education and training, and using
    telehealth to bring together knowledge and skills across disciplines to
    provide effective, efficient, and coordinated care.
        Programs such as Graduate Psychology Education (GPE); Opioid
    Workforce Enhancement Program; Mental and Behavioral Health; Behavioral
    Health Workforce Education and Training (BHWET); and Allied Health
    Training test educational innovations, respond to changing delivery
    systems and models of care, and timely address emerging health issues
    in their communities. The BHWET and Mental and Behavioral Health
    programs, which include GPE, provides training to expand access to
    mental and behavioral health services for vulnerable and underserved
    populations. In AY 2018-19, nearly 50 percent of all BHWET and GPE
    grantees provided substance use disorder treatment services.
        Area Health Education Centers (AHEC) support the recruitment and
    training future physicians in rural areas, as well as providing
    interdisciplinary healthcare delivery sites, which respond to community
    health needs. In AY 2018-19, AHECs supported 192,000 pipeline program
    participants, provided over 34,000 clinical training rotations for
    health professions trainees.
        Title VII Geriatric Workforce programs integrate geriatrics and
    primary care to provide coordinated and comprehensive care for older
    adults. These programs provide training across the provider continuum
    (students, faculty, providers, direct service workers, patients,
    families, and lay and family caregivers), focusing on interprofessional
    and team-based care and on academic-community partnerships to address
    gaps in healthcare for older adults. To advance the training of the
    current workforce, the Geriatrics Workforce Enhancement Program (GWEP)
    provided 1,342 unique continuing education courses to 187,955 faculty
    and practicing professionals in AY 2018-19, including 445 courses on
    Alzheimer's and dementia-related diseases
        Nursing Workforce Development.--Title VIII nursing workforce
    development programs provide Federal support to address all aspects of
    nursing workforce demands, including education, practice, recruitment,
    and retention, with a focus on rural and medically underserved
    communities. These programs include Advanced Nursing Education; Nursing
    Workforce Diversity; Nurse Education, Practice, Quality, and Retention;
    NURSE Corps; and Nurse Faculty Loan Program. In AY 2018-2019, the Title
    VIII Advanced Education Nursing programs supported more than 9,000
    nursing students in primary care, anesthesia, nurse midwifery, and
    other specialty care, all of whom received clinical training in primary
    care in medically underserved communities and/or rural settings.
        Oral Health.--The Primary Care Dentistry program invests in
    expanding programs in dental primary care for pediatric, public health,
    and general dentistry. The Pre- and Postdoctoral Training, Residency
    Training, Faculty Development, and Faculty Loan Repayment programs
    encourage integrating dentistry into primary care.
        Workforce Information and Analysis.--The Workforce Information and
    Analysis program Provides funding for the National Center for Health
    Workforce Analysis as well as grants to seven Health Workforce Research
    Centers across the country that perform and disseminate research and
    data analysis on health workforce issues of national importance.
        While HPNEC's members acknowledge the increasing demands and fiscal
    challenges facing appropriators, funding for HRSA's workforce
    development programs is critical in creating a culturally competent
    workforce that can respond to current and future public health threats
    facing all Americans. Therefore, HPNEC encourages the subcommittee to
    adopt at least a $790 million for HRSA's Title VII and VIII programs to
    continue the nation's investment in our health workforce.
                                     ______

                Prepared Statement of the Hepatitis B Foundation
            hbf recommendations for fiscal year 2021 appropriations
    _______________________________________________________________________

    National Institutes of Health
      --Along with the biomedical research community, the Hepatitis B
            Foundation (HBF) recommends at least $44.7 billion for NIH in
            fiscal year 2021. This would be a $3 billion increase over
            NIH's program level funding in fiscal year 2020. This funding
            level would allow for meaningful growth above inflation in the
            base budget that would expand NIH's capacity to support
            promising science in all disciplines beyond the directed
            funding included in the 21st Century Cures Act.
      --HBF commends NIAID, NIDDK, NCI for the development of a Trans-NIH
            Strategic Plan to Cure Hepatitis B and urges the Institutes to
            issue targeted calls for research to implement and fund the
            Strategic Plan.
    Centers for Disease Control and Prevention
      --HBF supports $8.3 billion for the Centers for Disease Control and
            Prevention programs in fiscal year 2021, and within that $134
            million for the Division of Viral Hepatitis. HBF further urges
            the CDC to allocate the necessary resources to address serious
            surveillance shortcoming without adversely impacting other CDC
            hepatitis B programs.
    _______________________________________________________________________

        Mr. Chairman and Members of the Subcommittee, thank you for the
    opportunity to provide testimony as you consider funding priorities for
    fiscal year 2021. I am Tim Block, President of the Hepatitis B
    Foundation (HBF). The Hepatitis B Foundation and its associated Baruch
    S. Blumberg Institute in Bucks County, Pennsylvania has grown to more
    than 100 researchers and public health professionals and has one of the
    largest, if not the largest, concentration of nonprofit scientists
    working on the problem of hepatitis B and liver cancer in the United
    States. The Foundation is a national disease advocacy organization that
    has become the world's leading portal for patient-focused information
    about hepatitis B. The Baruch S. Blumberg Institute is internationally
    recognized, and we believe, home to some of as the most exciting and
    promising work in the field.
        Mr. Chairman, HBF joins the Ad Hoc Group for Medical Research
    Funding, a coalition of 300 patient and voluntary health groups,
    medical and scientific societies, academic research organizations and
    industry, in recommending $44.7 billion, an increase of $3 billion, for
    the National Institutes of Health in fiscal year 2021. While HBF
    recognizes there are demands on our Nation's resources, we believe the
    ever-increasing health threats and expanding scientific opportunities
    continue to justify increased funding for NIH. HBF further urges that
    NIH increase investments in hepatitis B research in order to find a
    cure for the 2.2 million Americans infected with the hepatitis B virus
    (HBV) and more than 10 deaths each day as a direct result of hepatitis
    B.
        In addition to the NIH, there are a number of programs within the
    jurisdiction of the subcommittee that are important to HBF, including
    the Centers for Disease Control and Prevention. We join the CDC
    Coalition, an advocacy coalition of more than 140 national
    organizations, in recommending $8.3 billion for the Centers for Disease
    Control and Prevention in the fiscal year 2021 bill. Within that total,
    we join the Hepatitis Appropriations Partnership in urging $134 million
    for the CDC's Division of Viral Hepatitis.
                 recognizing the leadership of the subcommittee
        Mr. Chairman, HBF appreciates your leadership and the leadership of
    this Subcommittee in supporting public health service programs. Your
    support is greatly recognized and appreciated. We applaud the
    Committee's leadership in making progress in these important areas and
    to allocating increased funding to these programs during periods of
    fiscal austerity. We are particularly grateful for your leadership in
    securing generous and steady increases for the NIH in your tenure as
    Chairman.
                         national institutes of health
        As previously noted, HBF recommends an fiscal year 2021 funding
    level of $44.7 billion for the NIH, which would enable real growth over
    health research inflation as an important step to ensuring stability in
    the Nation's research capacity over the long term. The Administration's
    request of $38.7 billion in fiscal year 2021, translating to a $3.0
    billion cut, is reckless and shortsighted. Cuts to NIH would affect
    every American, including patients, their families, researchers, and
    communities where NIH investment spurs economic growth.
        In addition to overall funding for the NIH, HBF urges that NIH
    investments in hepatitis B research be increased at least $38.7 million
    a year for 6 years in order to fund identified research opportunities
    that would help cure and eliminate the disease once and for all. The
    Hepatitis B Foundation appreciated the creation of the Hepatitis B
    Trans-NIH Working Group and was even more encouraged by the release of
    a Strategic Plan for Trans-NIH Research to Cure Hepatitis B in December
    of 2019. Report language is requested in the fiscal year 2021 Report
    urging the NIAID and NIDDK to issue targeted calls for HBV research
    proposals in fiscal year 2021 focused on the many new research
    opportunities identified by the Strategic Plan.
        In the U.S., 1 in 20 Americans has been infected with hepatitis B
    virus (HBV) and an estimated 2.2 million are chronically infected.
    Worldwide, HBV is associated with 840,000 deaths each year, making it
    the 10th leading cause of death in the world. Left undiagnosed and
    untreated, 1 in 4 of those with chronic HBV infection will die
    prematurely from cirrhosis, liver failure and/or liver cancer. Although
    HBV is preventable and treatable, there is still no cure for this
    disease. In view of the epidemic scope of hepatitis B and the fact that
    the virus was discovered 50 years ago, it is disappointing that funding
    for HBV research at the NIH is only expected to be funded at $66
    million in fiscal year 2021.
        There is the need, the know-how, and the tools to find a cure that
    will bring hope to almost 300 million people worldwide suffering from
    chronic hepatitis B. A cure was accomplished for hepatitis C with
    increased Federal attention and funding. It can be accomplished for
    hepatitis B as well. Each year, despite an effective vaccine, there are
    30 million new HBV infections worldwide and over 80,000 new infections
    in the U.S. Moreover, despite the availability of seven approved
    medications to manage chronic HBV infection, none are curative, most
    require lifelong use, and only reduce the likelihood of death due to
    liver disease by 40-60 percent.
        In addition to the devastating toll on patients and their families,
    ignoring hepatitis B is costing the United States an estimated $4
    billion per year in medical costs. By increasing the NIH budget for
    hepatitis B we have a good chance of success in finding a cure in the
    next few years. There are exciting new research developments and
    opportunities in the field that make finding a cure very possible.
                   centers for disease control and prevention
        Given the challenges and burdens of chronic disease and disability,
    public health emergencies, new and reemerging infectious diseases and
    other unmet public health needs, HBF joins the 140 organizations in the
    CDC Coalition and urges a funding level of at least $8.3 billion for
    CDC's programs in fiscal year 2021. This is $693 million more than the
    Administration's request. The CDC serves as the command center for the
    nation's public health defense system against emerging and reemerging
    infectious diseases. States, communities, and the international
    community rely on CDC for accurate information and direction in a
    crisis or outbreak. The proposed reduction, especially in the time of a
    global pandemic is reckless and we are strongly opposed.
        The CDC's Division of Viral Hepatitis (DVH) is part of the National
    Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention at CDC. In
    collaboration with domestic and global partners, DVH provides the
    scientific and programmatic foundation and leadership for the
    prevention and control of hepatitis virus infections and their
    manifestations. HBF joins the Hepatitis Appropriations Partnership in
    recommending $134 million for the DVH in fiscal year 2021. This is $95
    million more than the Administration's request.
        The CDC Division of Viral Hepatitis spends less than 5 percent on
    HBV focused projects, despite hepatitis B infected patients comprising
    more than 35 percent of all those infected with viral hepatitis.
    Furthermore, tremendous HBV-related health disparities exist for people
    of Asian and Pacific Islander descent and recent African immigrants.
    These groups represent less than 5 percent of the U.S. population but
    make up over 50 percent of the U.S. burden of chronic HBV infection.
    CDC has not adequately addressed the issue of chronic HBV infections
    among high-risk, foreign-born populations and their children. Of
    particular concern, surveillance within the CDC surveillance program is
    not robust enough to accurately report the prevalence of the disease in
    high incidence states such as California and Hawaii. In view of the
    fundamental importance of good surveillance data to develop, manage and
    analyze public health programs and interventions, HBF urges CDC to
    allocate the necessary resources to address this shortcoming without
    adversely impacting other CDC hepatitis B programs.
        HBF is further concerned that despite the availability of an
    effective hepatitis B (HBV) vaccine, less than 25 percent of adults age
    19 and older are vaccinated. According to CDC's most recent survey of
    Vaccination Coverage Among Adults, this poor vaccination rate remains
    flat and has not improved in several years. We are encouraged that CDC
    is evaluating new universal HBV vaccination recommendations including a
    comprehensive plan to increase adult HBV vaccinations. The CDC is
    further urged to promote awareness about the importance of hepatitis B
    vaccination among medical and health professionals, communities at high
    risk, and the general public and to improve collaboration and
    coordination across CDC to achieve this goal.
                             summary and conclusion
        Mr. Chairman, again we wish to thank the Subcommittee for its past
    leadership. Significant progress has been made in meeting the many
    public health concerns facing this Nation, due to your efforts. Mr.
    Chairman, if this country is to continue to see advances in improving
    the health and well-being of our Nation adequate funding for the public
    health service is paramount.
        There is the need, the know-how, and the tools to find a cure that
    will bring hope to more than 292 million people worldwide suffering
    from hepatitis B. A cure was accomplished for hepatitis C with
    increased Federal attention and funding. It can be accomplished for
    hepatitis B as well. Each year, despite an effective vaccine, there are
    an estimated 30 million new HBV infections worldwide and over 50,000
    new infections in the U.S. Moreover, recent advances in the scientific
    understanding of new viral and immunological antiviral targets, and new
    experimental systems, are leading to innovations in drug discovery.
    There are 46 drugs currently in development, of which 27 are already in
    clinical trials. The findings of two recent National Academy of Science
    reports that not only is a cure for hepatitis B within reach, but the
    virus could be totally eliminated when coupled with public health
    interventions to improve diagnosis, care and treatment. The most recent
    report, titled ``A National Strategy for the Elimination of Hepatitis B
    and C Phase Two Report'', recommends specific actions to hasten the end
    of these diseases and lays out five areas--including research--to
    consider in the national plan. HBF appreciates the opportunity to
    provide testimony to you on behalf of these paramount needs of the
    Nation.

        [This statement was submitted by Timothy Block, Ph.D., President,
    Hepatitis B Foundation.]
                                     ______

               Prepared Statement of the HIV Medicine Association
        Chairman Blunt, Ranking Member Murray, and members of the
    Subcommittee my name is Dr. Judith Feinberg, Fellow of the Infectious
    Diseases Society of America, and Chair of the HIV Medicine Association
    (HIVMA). I am pleased to submit testimony on behalf of HIVMA. HIVMA
    represents more than 6,000 physicians, scientists and other healthcare
    professionals around the country on the frontlines of the HIV epidemic.
    Our members provide medical care and treatment to people living with
    HIV in the U.S., lead HIV prevention programs and conduct research that
    has led to the development of effective HIV prevention and treatment
    options. Many of them are infectious diseases specialists who are now
    on the frontlines of their community's coronavirus (COVID-19) response.
        For the fiscal year 2021 appropriations process, we urge you to
    increase funding for the Ryan White HIV/AIDS Program at the Health
    Resources and Services and Administration (HRSA); increase funding for
    the Centers for Disease Control and Prevention's (CDC) HIV, hepatitis
    and STD prevention programs; increase investments in HIV research
    supported by the National Institutes of Health (NIH); appropriate
    additional funding to support the ``Ending the HIV Epidemic'' (EHE)
    Initiative; and address workforce shortages that affect the
    implementation of the EHE initiative as well as the response to the
    COVID-19 pandemic. As the United States responds to the global COVID-19
    pandemic, it is paramount to provide robust funding for these vital
    programs which support global and domestic health security measures and
    our public health infrastructure.
        The COVID-19 pandemic has dramatically impacted public health
    programs across the country. Critical programs are at their breaking
    point as they continue to fight against COVID-19 while simultaneously
    responding to their existing public health priorities. Many programs
    have been forced to shift and re-focus their work. Any reduction in
    Federal funding for state and local health departments, community-based
    organizations and other entities that provide core HIV prevention,
    diagnosis and treatment services deserve scrutiny and public comment by
    those of us dealing with these issues firsthand.
        The funding requests in our testimony largely reflect the consensus
    of the Federal AIDS Policy Partnership, a coalition of HIV
    organizations from across the country. For a chart of current and
    historical funding levels, along with coalition requests for each
    program, please click here: https://bit.ly/2SNWk7h.
    Health Resources and Services Administration--HIV/AIDS Bureau:
        HRSA's Ryan White HIV/AIDS Program provides medical care and
    treatment services to over half a million people living with HIV. Ryan
    White Program providers are also on the frontlines of the COVID-19
    pandemic, and they need increased and sustained funding to meet the
    current needs of their patients. Ryan White programs effectively engage
    clients in comprehensive care and treatment, including increasing
    access to HIV medication, which has resulted in 87 percent of clients
    achieving viral suppression, the goal of HIV treatment that also
    decreases transmission, compared to just 59 percent of all people
    living with HIV nationwide.
        Additional funding across the program's parts to help people living
    with HIV maintain access to care and treatment during the economic
    downturn, meet the new needs of people who now are without health
    insurance, and prevent and contain the spread of COVID-19 is crucial.
    To continue providing comprehensive, life-saving treatment and to bring
    many more people into care through the Ending the HIV Epidemic
    Initiative, we request a $263 million increase over fiscal year 2020
    levels for the Ryan White HIV/AIDS Program for a total of $2.652
    billion.
    Policy--Ryan White Program Income:
        Successful HIV prevention for individuals at risk for HIV is
    available now through education, routine HIV screening, and ready
    access to pre-exposure prophylaxis (PrEP), post-exposure prophylaxis
    (PEP), harm reduction services, and other prevention tools, strategies
    both known now and yet to be discovered. HIVMA supports the HIV/AIDS
    Bureau in allowing Ryan White Program grantees to use their program
    income to reduce new HIV infections and services that improve care and
    treatment outcomes for people living with HIV, as long as the use of
    that program income does not reduce access to current or critical HIV
    care and treatment services provided by the grantee.
        HIVMA urges an allocation of $225.1 million, or a $24 million
    increase over current funding, for Ryan White Part C programs. Part C-
    funded HIV medical clinics are struggling to meet the demand of
    increasing patient caseloads. The team-based and patient-centered Ryan
    White care model has been highly successful at improving clinical
    outcomes for a population with complex healthcare needs. Persons with
    HIV who receive Ryan White services are more likely to be prescribed
    HIV treatment and to be virally suppressed, which also limits
    transmission to others. Between 2010 and 2018, the viral suppression
    rate for all Ryan White clients increased from 70 percent to 87
    percent.\1\ We also know that the annual healthcare costs for persons
    who are diagnosed late and/or do not have reliable access to care and
    treatment are nearly 2.5 times greater than that of healthier persons
    with HIV.\2\ Increased Ryan White Part C funding also is urgently
    needed to meet the increasing demand for treatment for substance use
    disorders and mental health at Ryan White clinics.
    ---------------------------------------------------------------------------
        \1\ Health Resources and Services Administration. Ryan White HIV/
    AIDS Program Annual Client-Level Data Report 2016. https://
    hab.hrsa.gov/sites/default/files/hab/data/datareports/RWHAP-annual-
    client-level-data-report-2016.pdf.
        \2\ Gilman BH, Green, JC. Understanding the variation in costs
    among HIV primary care providers. AIDS Care, 2008:20;1050-6. doi:
    10.1080/09540120701854626.
    ---------------------------------------------------------------------------
        We also recommend funding the administration's request of $716
    million in funding for the Ending the HIV Epidemic initiative--more
    than double the 2020 request. The EHE Initiative will focus on 48
    counties, the District of Columbia, San Juan, P.R., and seven rural
    states where the incidence of new HIV infections are the highest. Last
    year, those jurisdictions developed community-specific plans to combat
    HIV that addresses the unique needs of each jurisdiction. The funds
    appropriated last year will allow those plans to be scaled up.
    Health Resources and Services Administration--Bureau of Primary Health
            Care:
        We recommend appropriating $87 million in new funding for HRSA's
    Community Health Center program for the End the HIV Epidemic
    initiative. Community health centers, especially those already funded
    by the Ryan White Program, are critical entry points for people with
    limited resources or without other access to care to get tested and
    initiate PrEP. CDC estimates only 10 percent of those who could benefit
    from PrEP have had it prescribed to them, and those who need it most--
    black and Latino gay and bisexual men at high risk--are prescribed it
    at a much lower rate.\3\ Scaling up PrEP among the most affected
    populations in the EHE areas is critical to ending the HIV epidemic.
    Without a vaccine on the horizon, PrEP for HIV is our most effective
    prevention tool.
    ---------------------------------------------------------------------------
        \3\ CDC. HIV prevention pill not reaching most Americans who could
    benefit--especially people of color. https://www.cdc.gov/nchhstp/
    newsroom/2018/croi-2018-PrEP-press-release.html.
    ---------------------------------------------------------------------------
    Centers for Disease Control and Prevention--National Center for HIV/
            AIDS, Viral Hepatitis, Sexually Transmitted Diseases, and
            Tuberculosis Prevention:
        CDC serves as the command center for the nation's public health
    defense system against emerging and reemerging infectious diseases.
    From aiding in the surveillance, detection and prevention of the
    current COVID-19 outbreak to playing a lead role in the control of
    Ebola in West Africa and the Democratic Republic of the Congo to
    pandemic flu preparedness, CDC is both a national and global expert
    resource and response center, coordinating communications and action
    and serving as the laboratory reference center. To meaningfully address
    the HIV, viral hepatitis and STD epidemics, as well as the co-occurring
    crisis of substance use disorder-especially injection drug use-- we
    request a $647 million overall increase above fiscal year 2020 levels
    for a total of $1.921 billion.
        For the Division of HIV/AIDS Prevention (DHAP), we request a total
    of $1.293 billion, which is a $365 million increase over fiscal year
    2020 levels. DHAP conducts our national HIV surveillance and funds
    state and local health departments and communities to conduct evidence-
    based HIV prevention activities. As HIV prevention and surveillance
    staff are shifted to work on the COVID-19 response, it is important
    that the HIV prevention infrastructure is not impacted. CDC's national
    surveillance system is a key tool in identifying people and regions
    most impacted by the HIV epidemic, and tailoring prevention efforts to
    meet the needs of those populations and prevent HIV transmission
    clusters. CDC's high impact prevention strategies work, but with flat
    funding, we cannot reach all the people at risk for HIV. We also
    recommend appropriating the $371 million requested by the
    administration for the Ending the HIV Epidemic initiative, which will
    allow CDC to focus on efforts to scale up HIV testing, implement PrEP
    programs, and immediately link people newly diagnosed with HIV to care
    to preserve their health and prevent further spread.
        Additionally, we urge the appropriation of the requested $58
    million for the CDC to fund surveillance and programming to monitor and
    prevent opioid-related infectious diseases. Funding for CDC's
    Infectious Diseases and Opioid Epidemic programming increases
    prevention, testing and linkage to care efforts to combat the increase
    in new HIV and viral hepatitis B and C infections and the massive
    increase in life-threatening bacterial infections such as endocarditis
    that affects heart function, all of which have spiked in areas impacted
    by the opioid crisis. The COVID-19 pandemic already has resulted in
    increased drug overdoses, homelessness, and unemployment, worsening the
    underlying conditions in regions already hard-hit by the drug epidemic.
    Policy--Syringe Services Programs (SSP):
        The fiscal year 2020 appropriations bill continued a harmful policy
    rider that restricts the use of Federal funds for the purchase of
    sterile syringes, which negatively impacts the ability of state and
    local public health groups from expanding SSPs. SSPs have been shown to
    limit HIV and hepatitis C infections and to increase the number of
    people who enter treatment for substance use disorder, while at the
    same time decreasing drug-related crime. HIVMA is opposed to
    restrictions on Federal funding that ban SSPs from purchasing sterile
    syringes.
        For the Division of Viral Hepatitis (DVH), we request a total of
    $134.0 million, which is a $95 million increase over fiscal year 2020
    levels. CDC announced that in 2017 there were over 44,000 recognized
    new cases of hepatitis C. New hepatitis B and C infections are being
    driven by injection drug use throughout the country, and especially in
    regions hardest hit by the opioid epidemic.\4\ We have the tools to
    prevent this growing epidemic, but only significantly increased funding
    can provide the needed level of testing, education, screening,
    surveillance, treatment and on-the-ground syringe service programs
    needed to reduce new infections, and to put the U.S. on the path to
    eliminate hepatitis as a public health threat.
    ---------------------------------------------------------------------------
        \4\ Centers for Disease Control and Prevention. Viral Hepatitis
    Surveillance Report 2016. https://www.cdc.gov/hepatitis/statistics/
    2016surveillance/pdfs/2016HepSurveillanceRpt.pdf.
    ---------------------------------------------------------------------------
        For the Division of STD Prevention (DSTDP), we request a total of
    $240.8 million, which is an $80 million increase over fiscal year 2020
    levels. Data released in October 2019 by the CDC shows that after 5
    years of dramatic increases, combined cases of syphilis, gonorrhea, and
    chlamydia reached all-time highs in the U.S. Tragically, congenital
    (mother-to-child) syphilis increased by 40 percent in 1 year, leading
    to a 22 percent increase in newborn deaths related to congenital
    syphilis. These historic increases have created a public health
    emergency with devastating long-term health consequences, including
    infertility, cancer, HIV transmission, and infant and newborn deaths.
    National Institutes of Health--Office of AIDS Research:
        In order to continue funding 21st-century discoveries that will
    help us end the HIV epidemic, such as improved HIV prevention
    modalities and treatment options, we ask that at least $3.502 billion
    be allocated for HIV research in fiscal year 2021, an increase of $426
    million. This level of funding is vital to sustaining the pace of
    research that will improve the health and quality of life for millions
    of people in the U.S. and abroad. Flat funding of HIV research from
    fiscal year 2015 to fiscal year 2020 threatens to slow progress toward
    a vaccine and a cure, erode our capacity to sustain our nation's
    leadership in HIV research and innovation, and discourage the next
    generation of scientists from entering the field.
    Indian Health Service--Eliminating HIV and Hepatitis C in Indian
            Country:
        Last year, the community and administration requested $25 million
    to address the disparate impact HIV and hepatitis C have on American
    Indian/Alaska Native populations through the Indian Health Service.
    Between 2011 and 2015, there was a 38 percent increase in new HIV
    diagnoses among the AI/AN population overall, and a rise of 58 percent
    among AI/AN gay and bisexual men. We were disappointed that the $25
    million request was not included in the final fiscal year 2020 funding
    and hope that this can be remedied in fiscal year 2021. This year, we
    urge you to fund the EHE Initiative work within Indian Health Service
    at $27 million.
    COVID-19 Response Funding Request:
        As the Senate examines budget requests and the needs of Federal
    spending programs, immediate supplemental funding for programs
    negatively affected by COVID-19 is urgently needed. As the impacts of
    the pandemic spread and accelerate throughout the country, additional
    funding for the Ryan White Program and the CDC is needed. Investment in
    the Ryan White program is critical to ensure that no person living with
    HIV loses access to services during the COVID-19 pandemic and in the
    economic aftermath. To meet these immediate needs, Congress should
    allocate $500 million in supplemental funding to be divided amongst all
    parts of the Ryan White Program and at least $100 million toward the
    CDC's Division of HIV Prevention in the next COVID-19 response package.
    Conclusion:
        Thousands of frontline providers, scientists and public health
    professionals who are working to save lives, contain the spread of
    disease and inform responses to the threat to health, stability and
    security worldwide are currently involved on the COVID-19 response.
    These same professionals who are actively orchestrating the response to
    COVID-19 are also the same dedicated professionals who are responding
    to the EHE initiative--from the White House to state and local
    government- compounding strains on a limited workforce. The current
    pandemic highlights the importance of preparing for infectious diseases
    outbreaks by fully funding programs that support public health services
    and infrastructure so that we are better prepared for the next
    pandemic.
        We are concerned about the long-term impact COVID-19 will have on
    our nation's healthcare infrastructure and clinical workforce and the
    impact this may have on the administration's End the HIV Epidemic
    initiative. We have the tools to end the HIV epidemic in the U.S. To
    accomplish this, we must substantially increase funding to support
    comprehensive prevention and care programs, grow a qualified workforce
    and create a healthcare system which routinely screens people for HIV
    and provides access to those living with HIV uninterrupted access to
    care and treatment. We need to invest in a strong public health
    infrastructure and protect Americans from public health threats and
    emergencies. With congressional support we can be better prepared for
    preventing future outbreaks and pandemics and get on track to end HIV
    as an epidemic. Thank you for your time and consideration of these
    requests. Please contact me or Jose A. Rodriguez, Senior Policy &
    Advocacy Manager, at Jrodriguez@hivma.org if you have any questions or
    need additional information.

        [This statement was submitted by Judith Feinberg, MD, FIDSA, Chair,
    HIV
    Medicine Association.]
                                     ______

                 Prepared Statement of HIV+HEP Policy Institute
        On behalf of the HIV+Hepatitis Policy Institute, we respectfully
    submit this testimony in support of increased funding for domestic HIV
    and hepatitis programs in the fiscal year 2021 Labor, HHS spending
    bill. The HIV+Hepatitis Policy Institute is a leading HIV and hepatitis
    policy organization promoting quality and affordable healthcare for
    people living with or at risk of HIV, hepatitis, and other serious and
    chronic health conditions.
        While our nation and the entire world are currently battling COVID-
    19, where the science is in its infant stage, we have the science to
    end two other infectious diseases that have been impacting our country
    for decades: HIV and hepatitis C. While there still is no cure or
    vaccine for HIV, we have preventive tools along with treatments that
    suppress the virus and together can bring the number of new infections
    down to a point that we can end HIV. For hepatitis C, there are
    curative treatments. However, Federal leadership and funding for our
    public health system is necessary to ramp up efforts to address these
    two epidemics. The programs and funding increases detailed below are
    pivotal to our nation's ability to end both HIV and hepatitis.
        The healthcare workers, community-based organizations, and state
    and local governments who have been on the front line of the COVID-19
    response are the same people and organizations that have been
    responsible for planning and implementing our nation's response to both
    HIV and hepatitis and will continue to be once the current crisis
    subsides. Funding for them to address infectious diseases, such as HIV
    and hepatitis and others in the future, will particularly be necessary
    in the year ahead.
               funding public health programs outside budget caps
        Our nation's public health infrastructure has been underfunded for
    many years. Now is the time to provide increased funding to allow
    Federal agencies, state and local jurisdictions, and community
    organizations on the ground the resources and capacity to build
    interconnected
        and state-of-the-art surveillance, prevention, screening, and
    educational programs. In order to provide this necessary funding, the
    HIV+Hepatitis Policy Institute strongly supports funding critical
    public health programs, including those for ending HIV and hepatitis in
    the United States, outside of the Budget Control Act spending caps,
    similar to the creation of the proposed Health Defense Operations (HDO)
    fund. Without the necessary funding we will never end these infectious
    diseases or be prepared for future epidemics.
        HIV and hepatitis programs across the nation are experts in best
    practices related to infectious disease prevention, control, and
    treatment. Jurisdictions across the nation are discussing how to
    incorporate and bundle screening and testing for COVID-19 infection
    with the same services for HIV, hepatitis, and sexually transmitted
    infections. Programs addressing HIV and hepatitis also have significant
    experience working with populations currently disproportionately
    affected by COVID-19 including homeless and racial and ethnic
    minorities.
                            ending the hiv epidemic
        Announced in the 2019 State of the Union, the Ending the HIV
    Epidemic (EHE) initiative is a historic effort to reduce new HIV
    infections by 75 percent in the next 5 years and by 90 percent in the
    next 10 years. The initiative focuses on four key areas: diagnosing all
    individuals with HIV as early as possible after infection; treating the
    infection rapidly after diagnosis, achieving sustained viral
    suppression; protecting individuals at risk for HIV using proven
    prevention approaches such a Pre-exposure Prophylaxis (PrEP); and
    responding rapidly to detect and respond to growing HIV clusters.
        We thank the committee for supporting funding for the first year of
    this initiative. Funding is being distributed to the fifty-seven target
    Phase-1 cities and states, which have all developed Ending the HIV
    Epidemic plans. They are ramping up screening to diagnose people
    unaware of their HIV status and link them to antiretroviral treatment
    and providing PrEP to those who are at high risk of HIV. For fiscal
    year 2021, we ask that you fully fund the second year of the initiative
    to continue to scale up the EHE initiative by supporting the
    president's budget request of $716 million, an increase of $450 million
    from fiscal year 2020.
        With proposed fiscal year 2021 funding of $371 million, an increase
    of $231 million, the Centers for Disease Control and Prevention (CDC)
    will transition from planning to implementation and intensify work
    already begun in the fifty-seven target jurisdictions. CDC grants will
    drive additional testing with the goal of doubling the number of new
    HIV diagnoses rapidly treated with antiretroviral therapy to maintain
    health and prevent additional HIV transmissions. Funded jurisdictions
    will use pharmacy data, telehealth, mobile testing, and new science-
    based networks to ensure individuals enter and adhere to care.
        An increase of $182 million for a total of $302 million will allow
    the Health Resources and Services Administration (HRSA) to expand
    treatment and prevention services through its vast network of
    providers. With $137 million, an increase of $87 million, the Bureau of
    Primary Health Care (BPHC) will fund over 300 additional community
    health centers to expand the provision of PrEP services, bringing the
    total number of health centers funded by the initiative to over 500.
    The Ryan White HIV/AIDS Program would receive an increase of $95
    million to the amount of $165 million to reach over 43,000 people
    living with HIV who are not yet in care or who have not yet received an
    HIV diagnosis. HRSA's Ryan White Program is a critical safety net
    program providing care, treatment, and support services to over 500,000
    people living with HIV. Almost 86 percent of Ryan White clients are
    virally suppressed, far exceeding the national average of nearly 60
    percent.
        The EHE is a critical targeted component of our nation's response
    to the HIV epidemic; however, we must continue to invest in ongoing HIV
    programs throughout the nation. This includes the CDC's HIV Prevention
    Programs (including the Division of School and Adolescent Health),
    HRSA's Ryan White HIV/AIDS Programs (including the AIDS Drug Assistance
    Program), the Minority HIV/AIDS Initiative, AIDS Research at the NIH,
    and the Teen Pregnancy Prevention Program (TPPP).
        Each of these programs is necessary to address the HIV epidemic in
    our nation and each is being negatively impacted by the ongoing COVID-
    19 pandemic. State and local health departments' staff is being
    detailed to deal exclusively with COVID-19 and facing furloughs to make
    up for budget shortfalls. Programs that rely on in-person visits for
    assessments and testing are having to purchase new equipment to
    increase telehealth services and organizations are having to work with
    clients and their families to ensure access to broadband and mobile
    devices to ensure consistent access. Increased funding will help our
    HIV infrastructure be able to provide necessary services in the ``new
    normal.''
                                viral hepatitis
        Additionally, we respectfully request that you provide increased
    funding for viral hepatitis programs at the CDC. The CDC estimates that
    more than 4.5 million people in the United States live with hepatitis B
    (HBV) or hepatitis C (HCV), with nearly half unaware they are living
    with the disease. The opioid epidemic has significantly increased the
    number of viral hepatitis cases in the United States, with new cases of
    HCV rising 374 percent between 2010 and 2017. Newly released CDC data
    show that in 2018 there were an estimated 50,300 new hepatitis C
    infections, which represents a three-fold increase in the rate of new
    infections over the last decade. The CDC also found that due to the
    ongoing opioid epidemic and injection drug use, there are now just as
    many new infections among Millennials as Baby Boomers, who in the past
    bore the brunt of all new cases. Therefore, the CDC is now recommending
    that every adult eighteen and older be tested at least once for
    hepatitis C, plus all women during each pregnancy, and those at risk.
        From 2006 to 2018, increases in reported cases of acute HBV
    infection range from 56 percent to 457 percent in states most heavily
    impacted by the opioid crisis. From 2014-2017, the number of reported
    cases of hepatitis A increased by 271 percent. There are several
    curative treatments available for HCV, but individuals must have access
    to screening and linkage to care programs to be able to take advantage
    of these medications.
    CDC Division of Viral Hepatitis
        The viral hepatitis programs at the CDC are severely underfunded,
    receiving only $39 million-far short of what is needed to build and
    strengthen our public health response to hepatitis. Currently, the CDC
    is only able to fund fourteen jurisdictions to conduct enhanced
    hepatitis surveillance, which is harming our nation's ability to
    respond to the infectious disease consequences of the opioid epidemic.
    Additional resources would allow the CDC to enhance testing and
    screening programs, conduct additional provider education, enhance
    clinical services specific to hepatitis at sites serving vulnerable
    populations, and increase services related to hepatitis outbreaks and
    injection drug use. We urge you to provide the CDC Division of Viral
    Hepatitis with $134 million, an increase of $95 million over fiscal
    year 2020 enacted levels.
        The CDC recently released a Notice of Funding Opportunity
    announcement to fifty-eight jurisdictions asking them to prepare ending
    hepatitis plans that focus on education, surveillance, screening,
    linkage to care, and syringe service programs. Unfortunately, since the
    state and local jurisdictions are responding to COVID-19, it had to
    been withdrawn. Later this year, the administration is expected to
    release an updated national hepatitis strategy with a stated goal to
    end hepatitis. However, the current level of funding is completely
    inadequate for these jurisdictions to even begin to discuss ending
    hepatitis--particularly hepatitis C, which has a cure, and hepatitis B,
    which has a vaccine and effective treatments.
    CDC's Eliminating Opioid-Related Infectious Diseases Program
        This CDC program focuses on addressing the infectious disease
    consequences of increased rates of injection drug use due to the opioid
    crisis. Providing full support for this program is another key step in
    preventing new cases of viral hepatitis and HIV and putting the country
    on the path towards elimination. We urge the committee to fund this
    program to eliminate opioid-related infectious diseases at no less than
    $58 million, an increase of $48 million, and the amount proposed in the
    president's budget.
                        syringe service programs (ssps)
        We also ask that the committee support ending any prohibition on
    the use of Federal funds to purchase sterile needles or syringes for
    SSPs. A wealth of scientific evidence has shown that SSPs reduce the
    spread of infectious diseases, such as HIV and hepatitis. Full Federal
    funding for these programs will only serve to make the programs
    stronger and more effective.
        In conclusion, we urge the committee to continue its investment in
    our nation's public health infrastructure specifically as it relates to
    addressing the ongoing HIV and HCV epidemics. Fortunately, we have the
    tools available to end both these epidemics; however, we must provide
    the necessary resources to achieve these goals.

        [This statement was submitted by Carl Schmid, Executive Director,
    HIV+HEP Policy Institute.]

                                     ______

                   Prepared Statement of Horner Richard  deg.
                      Prepared Statement of Richard Horner
        I am the mother of an adult child with schizophrenia. I would give
    anything to have a cure or at least better treatment for this awful
    brain disease that often leaves its victims in jail, homeless, or
    hospitalized; and destroys families. This serious brain illness is not
    rare as many believe, but affects 1.1 percent of the population and
    that statistic has been true since first recorded, and is basically the
    same throughout the world. Its cause is primarily genetic, but is
    believed to be triggered by environmental factors. Schizophrenia (and
    schizoaffective disorder) robs the person of motivation, concentration,
    and cognition, as well as presenting positive symptoms such as
    hallucinations and delusions. The disease usually occurs in late teen
    or early adult years, just when our bright and beloved children are
    preparing for jobs, universities, careers, serious relationships.
        The National Institute of Mental Health (NIMH) is the main Federal
    Government agency for research into mental illness. The NIMH was
    authorized through the passage of the National Mental Health Act in
    1946 to better help individuals with mental health disorders through
    better diagnosis and treatments. With a budget of almost $2 billion in
    2020, the NIMH conducts research and funds outside investigators to
    better understand mental illness and develop new treatments to reduce
    the burden these disorders have on individuals.
        I beg you to have NIMH prioritize research for the 5 percent of our
    population that has serious mental illnesses that include chronic
    depression (the leading cause of disability in the U.S.), schizophrenia
    (and schizoaffective disorder), and bipolar illness. This makes sense
    because it's the humane thing to do, but it also makes good fiscal
    smarts. The most severe mental illnesses account for the most dollars
    spent in hospitals, jails, prisons, emergency rooms, and services for
    the homeless.
        Dr. E. Fuller Torrey wrote in Psychiatric Times earlier this month:

        ``Congress awarded the National Institute of Mental Health an
            additional $98 million as part of the National Institutes of
            Health budget resolution in December 2019, which brings the
            NIMH budget to just under $2 billion and represents a 35
            percent increase since 2015, one of the largest increases in
            the history of the NIMH. Yet, during the 5 years from 2015
            through 2019, NIMH funded a total of TWO new drug treatment
            trials for schizophrenia and bipolar disorder, according to
            clinicaltrials.gov. This contrasts with the 5-year period from
            2006 through 2010 when NIMH funded 48 such trials . . .''
        In December 2019, the NIMH released a draft of their five-year
    strategic plan for public comment. They reported receiving more than
    6,000 responses identifying examples of research initiatives the NIMH
    could be pursuing today to help people with serious mental illness
    recover and live better lives. Despite this robust response, NIMH made
    no substantive changes to the research goals or objectives in the final
    version released to the public earlier this week.
        The NIMH research goals for 2020-2025 heighten the existing
    imbalance in NIMH research. In doing so, they offer little hope for new
    or better treatments for individuals who are currently afflicted with a
    mental illness during their lifetime, especially a serious mental
    illness. This failure is inexcusable given the large increase in
    research funding given to NIMH in recent years.
        Future NIMH funding must be used to correct the existing imbalance,
    not worsen it, especially now that the COVID-19 pandemic has upended
    the mental health treatment system and will likely result in an
    exacerbation of symptoms in people currently affected and an increase
    in serious mental illnesses among Americans. Those with the most severe
    forms of mental illness deserve to be prioritized.
        Thank you for your consideration,

        Sincerely.
                                     ______

         Prepared Statement of the Human Factors and Ergonomics Society
        On behalf of the Human Factors and Ergonomics Society (HFES), we
    are pleased to provide this written testimony to the Senate
    Subcommittee on Labor, Health and Human Services, Education, and
    Related Agencies for the official record. HFES urges the Subcommittee
    to provide $471 million for the Agency for Healthcare Research and
    Quality (AHRQ) and a minimum of $354.8 million for the National
    Institute for Occupational Safety and Health (NIOSH), including $32
    million for the Education and Research Centers (ERCs), in fiscal year
    2021.
        AHRQ funds research to protect and promote patient safety and care,
    while identifying and evaluating efficiencies to save lives and reduce
    costs. HFES requests $471 million, which is consistent with the fiscal
    year 2010 level adjusted for inflation. This funding level will allow
    AHRQ to rebuild portfolios terminated after years of cuts. HFES also
    urges the Subcommittee to continue to fund AHRQ as its own agency,
    rather than integrating it into the National Institutes of Health
    (NIH), as proposed in the President's fiscal year 2021 budget request.
        Additionally, HFES requests $354.8 million for NIOSH, including $32
    million for the Education and Research Centers (ERCs). NIOSH supports
    education and research in occupational health through academic degree
    programs and research opportunities. With an aging occupational safety
    and health workforce, ERCs are essential for training the next
    generation of professionals. The Centers establish academic, labor and
    industry research partnerships to achieve these goals. Currently, the
    ERCs are responsible for supplying many of the country's OSH graduates
    who will go on to fill professional roles.
        The fiscal year 2021 President's budget request proposes reducing
    the NIOSH budget and eliminating many NIOSH programs, which would limit
    the ability of workers to avoid exposures that can result in injury or
    illnesses, push back improved working conditions, eliminate
    occupational safety and health educational services to U.S. businesses,
    and ultimately raise healthcare costs.
        HFES and its members recognize and appreciate the challenging
    fiscal environment in which we as a nation currently find ourselves.
    However, we believe strongly that investment in scientific research
    serves as an important driver for innovation and the economy as well as
    for protecting and promoting the health, safety, and well-being of
    Americans. We thank the Subcommittee for its longtime recognition of
    the value of scientific and engineering research and its contribution
    to innovation and public health in the U.S.
               the value of human factors and ergonomics science
        HFES is a multidisciplinary professional association with over
    4,500 individual members worldwide, including psychologists and other
    scientists, engineers, and designers, all with a common interest in
    designing safe and effective systems and equipment that maximize and
    adapt to human capabilities.
        For over 50 years, the U.S. Federal Government has funded
    scientists and engineers to explore and better understand the
    relationship between humans, technology, and the environment.
    Originally stemming from urgent needs to improve the performance of
    humans using complex systems such as aircraft during World War II, the
    field of human factors and ergonomics (HF/E) works to develop safe,
    effective, and practical human use of technology. HF/E does this by
    developing scientific approaches for understanding this complex
    interface, also known as ``human-systems integration.'' Today, HF/E is
    applied to fields as diverse as transportation, architecture,
    environmental design, consumer products, electronics and computers,
    energy systems, medical devices, manufacturing, office automation,
    organizational design and management, aging, farming, health, sports
    and recreation, oil field operations, mining, forensics, and education.
        With increasing reliance by Federal agencies and the private sector
    on technology-aided decision-making, HF/E is vital to effectively
    achieving our national objectives. While a large proportion of HF/E
    research exists at the intersection of science and practice--that is,
    HF/E is often viewed more at the ``applied'' end of the science
    continuum--the field also contributes to advancing ``fundamental''
    scientific understanding of the interface between human decision-
    making, engineering, design, technology, and the world around us. The
    reach of HF/E is profound, touching nearly all aspects of human life
    from the healthcare sector, to the ways we travel, to the hand-held
    devices we use every day.
                                   conclusion
        HFES urges the Subcommittee to provide $471 million for AHRQ and
    $354.8 million for NIOSH, including $32 million for the Education and
    Research Centers (ERCs) in fiscal year 2021. These investments fund
    important research studies, enabling an evidence base, methodology, and
    measurements for improving healthcare, safety, and public health for
    Americans.
        On behalf of the HFES, we would like to thank you for the
    opportunity to provide this testimony. Please do not hesitate to
    contact us should you have any questions about HFES or HF/E research.
    HFES truly appreciates the Subcommittee's long history of support for
    scientific research and innovation.

        [This statement was submitted by Susan Hallbeck, PhD, President,
    and Steven C. Kemp, CAE, Executive Director, Human Factors and
    Ergonomics Society.]
                                     ______

                  Prepared Statement of Hurn Shauna
                     Prepared Statement of Shauna Hurn deg.
        My brother Elis Matetich is 38 years old & schizoaffective but does
    not believe he is sick (anosognosia) and will not take his medication.
    He was on disability almost 20 years ago, but then got a job and was
    employed for over 10 years (and was off disability) living
    independently and taking his meds most the time. Over the years he had
    become more isolated/adverse to coming to family gatherings and more
    argumentative and difficult to be around.
        Last year (2019) he lost his job, went off his meds for many
    months, and threatened the life of my stepdad, and believes our mom is
    a demon who wishes him harm. He has never been threatening or violent
    toward family prior to 2019 and this devastated us. Subsequently we got
    him hospitalized twice (two weeks each time/back to back) and were
    supposed to go to court against him for his threats to our family, but
    the court case was dropped.
      --He got in four fist fights while at Navos Behavioral Hospital, West
            Seattle, WA (Sep 2019) but was released in just 2 weeks (after
            many months of being unmedicated).
      --He was released with no aftercare plan, or instruction to family or
            anyone else, on how he was to take his medication. After his
            release he did not take his medication.
      --Our family worked with the Crisis team to get him in the hospital
            again, this time Fairfax Kirkland, WA (Oct 2019).
      --Upon his release he had been resistant to taking any kind of
            financial aid or help from family unless completely on his
            terms, he proceeded to spend the last of any money he had and
            wouldn't allow family to help him apply for disability.
        The past 2 months (Apr 2020-Current) he has been off his meds again
    and in crisis.
      --He believes there is a devil in his apartment and that family
            members have evil powers and intend to harm him.
      --He has gotten his two cars impounded in one weekend (while fleeing
            from the devil in his closet and the evil powers he believes
            are after him).
      --He slept in bushes for 3 nights because he was scared to go to his
            apartment because he thinks the devil is in it (and because he
            doesn't know how to get back home//he gets disoriented and does
            not actually know where he is, even though he has a smart phone
            he can use).
      --In the last 2 weeks he has not been eating or drinking because he
            is suspicious of food & water. He has probably lost 40-50 lbs
            within a short timeframe
      --He received stimulus money but says someone stole his wallet and he
            did not take any action with the bank to get a new debit card
            or with DSHS to apply for food stamps. (He claims to know how
            to do these things but why wouldn't he do them if he was
            starving?). Our family can't help him get these things back
            without his consent which he won't give.
      --He has been picked up by police multiple times, was charged with a
            DUI, but only jailed a few hours.
      --Every time I offer to help he insists he can and will do things on
            his own, but then he doesn't do it. Afterwards he blames other
            people or things for not following through.
      --I've been attending all of his counseling appointments at Valley
            Cities Federal Way WA to try to get him on track to take
            injection medication and regain his life. But he is resistant
            to everything.
        It's been about 2 months straight while he is in psychosis and
    unmedicated where I have been working with him to try to get him to
    voluntarily ask for help and get on injection medication. I am seeing
    him fall apart before my eyes and see that he is someone incapable of
    living without help. Except that he's 38 years, a full grown man with a
    mind of his own, that doesn't believe he needs help. It's a comparable
    situation to a grandparent with Dementia or Alzheimer's. If he is able
    to get stabilized on medication he might be able (over time) to get a
    job again, but he is nowhere near that right now, my brother is barely
    surviving and it's unclear if he will ever recover from this.
        I am overwhelmed at the level of care my brother needs and
    depressed that the Healthcare system falls completely short of helping
    my brother. I am upset the laws will criminalize my brother if he will
    not get treatment, but how will he accept treatment if he does not
    believe he is ill? The gaps in the healthcare system and government are
    putting the tremendous burden on the families to care for our
    schizophrenic/schizoaffective loved ones. How can someone with a brain
    disorder (schizoaffective) and/or anosognosia can be expected to
    voluntarily take medication? Everything I try to help my brother with,
    requires his consent but he will not give it, so I'm set up to fail/to
    try to convince a psychotic person to do things to manage their life. I
    have had so much advice from others to ``work around the system'' to
    ``stop helping my brother stay afloat financially'' (which would make
    him homeless) so that he can get ``help''. Basically, wait for his
    brain disorder to criminalize him, so that he will qualify for
    financial aid and treatment. Or they suggest we try to take away his
    legal rights by going to court against him. This is a huge moral
    conundrum for us as a family members, forcing us against our loved ones
    who need help!!! It's easy on the outside to tell someone to do this,
    but imagine it's your own parent or sibling. How would you feel about
    turning against them in order to help them? The severely mentally ill
    need a village, they need hope and a place in our communities... a
    system that requires them to take medication in order to keep a job to
    contribute to society (for those who are capable) or medication to get
    food (for those who can't work). Us, as family members, should not be
    forced to prove our loved ones are ill and need help. Other physical
    illnesses are treated//but not mental illness. Do you know how
    invalidating it is to have no hope for treatment for your loved one, no
    way to help them or make them safe? To wait until their illness gets so
    bad you are living in fear of the future? Our family should not be
    forced to take on the financial burden of housing them especially while
    they unmedicated, undergoing psychosis and resistant to help. But it is
    the disease causing this!!! But what about, us the family, who become
    targets of their delusions?? This is not safe for us. ``Prove he is
    going to kill himself or someone else''. ``Call 911'' they say. Or we
    force our loved ones to live on the streets and then must live with the
    guilt. The families are left with no rights to help their severely
    mentally ill loved ones, and no protection from them either. This is a
    human rights issue that needs to be addressed. Mental Illness is real.
    Especially as the violence and mass shootings in our country escalate,
    we need to start addressing mental illness that turns people into
    criminals.
        Prepared Statement of the Infectious Diseases Society of America
        On behalf of the Infectious Diseases Society of America (IDSA),
    which represents more than 12,000 physicians, scientists, public health
    practitioners and other providers involved in infectious diseases
    prevention, care, research and education, I urge the Subcommittee to
    provide full fiscal year 2021 funding for public health and biomedical
    research activities that save lives, contain healthcare costs and
    promote economic growth. IDSA asks the Subcommittee to provide $8.3
    billion for the Centers for Disease Control and Prevention (CDC), $44.7
    billion for the National Institutes of Health (NIH), $230 million for
    the Biomedical Advanced Research and Development Authority (BARDA)
    Broad Spectrum Antimicrobials and CARB-X programs, and $140 million for
    the Strategic National Stockpile Special Reserve Fund program.
                   centers for disease control and prevention
    Antibiotic Resistance Solutions Initiative
        We urge at least $200 million in funding for the Initiative in
    fiscal year 2021. IDSA members see the impact daily that antimicrobial
    resistance (AMR) has on patients. Antibiotic resistance is one of the
    greatest public health threats of our time. Drug-resistant infections
    sicken at least 2.8 million each year and kill at least 35,000 people
    annually in the United States. Antibiotic resistance accounts for
    direct healthcare costs of at least $20 billion. If we do not act now,
    by 2050 antibiotic-resistant infections are predicted to be the leading
    cause of death. Secondary bacterial infections caused by resistant
    bacteria and fungi are complicating care for seriously ill patients
    including those with COVID-19. Antibiotic resistance threatens the
    safety of major medical advances, including cancer chemotherapy, organ
    and bone marrow transplants, caesarean sections, and other surgeries--
    all of which carry risk of infection. The Federal response to AMR must
    be increased to prevent and detect multi-drug resistant infections. The
    requested funding would allow the expansion of efforts at state, local
    and territorial health departments to prevent, detect, contain and
    respond to multi-drug resistant infections. Funding would also support
    implementation of antimicrobial stewardship programs (newly required by
    CMS at hospitals) to reduce inappropriate antibiotic use and improve
    patient outcomes. Since fiscal year 2016, CDC has provided $300 million
    to 59 state and local health departments to increase capacity for
    faster response to outbreaks and emerging infections. Additionally,
    this funding improved antibiotic use, increased state and regional
    laboratory capacity to rapidly detect resistant infections, and
    enhanced tracking of healthcare-associated infections. These
    substantial payoffs mean a clear net positive for the Federal budget to
    recoup the direct costs of the program, but a deeper investment in
    fiscal year 2021 is needed to effectively address current and newly
    emerging threats and prepare for future challenges.
    Advanced Molecular Detection (AMD)
        AMD strengthens CDC's epidemiologic and laboratory expertise to
    effectively detect and respond to the ever-expanding universe of
    emerging diseases and deadly pathogens. Requested fiscal year 2021
    funding of at least $37.5 million is required to ensure AMD has updated
    cutting-edge technology to allow CDC to more rapidly determine where
    emerging diseases come from, whether microbes are resistant to
    antibiotics, and how microbes are moving through a population.
    Additional funding would help ensure state and local health departments
    have enhanced expertise to harness DNA sequencing of pathogens to ramp
    up early detection and response to surging disease outbreaks. AMD is
    integrating next-generation sequencing in the COVID-19 response, which
    provides a clearer picture of how the outbreak is evolving and how
    cases are connected, allowing more effective targeting of response
    efforts. AMD promotes more effective antimicrobial use when used by
    antimicrobial stewardship programs.
    National Healthcare Safety Network
        Fiscal year 2021 funding of at least $25 million for the National
    Healthcare Safety Network (NHSN) will enable CDC to expand tracking of
    healthcare-associated infections (HAIs), antibiotic use, and antibiotic
    resistance. The NHSN is the most widely used HAI tracking system in the
    country and provides facilities, states, regions, and the nation with
    data needed to identify problem areas and best practices, and to
    measure and drive the progress of prevention and stewardship efforts.
    NHSN is playing a central role in the COVID-19 response. Nursing homes
    are required by the Centers for Medicare and Medicaid Services to
    report cases of COVID-19 directly to NHSN, and are strongly encouraged
    to share information about confirmed COVID-19 cases with patients,
    residents, families, and loved ones. The responses will be uploaded
    into NHSN and will complement existing state-level reporting
    requirements, helping the Federal Government collect nationwide data to
    assist in COVID-19 response activities.
        This new NHSN capability for nursing homes follows the launch of
    CDC's NHSN Hospital Capacity and Patient Impact COVID-19 module. Given
    the breadth of reporting capability of NHSN, CDC was able to quickly
    adapt the system to easily collect nursing home data and report it to
    state health departments and other parts of the Federal Government
    emergency response for action.
        Additionally, as of April 1, 2018, 776 out of the over 5,500 U.S.
    hospitals have voluntarily reported antibiotic use data, and 317
    hospitals have reported antibiotic resistance data to the CDC NHSN
    Antibiotic Use and Resistance (AUR) module. While this represents
    progress, it falls strikingly short of the stated goal in the National
    Action Plan for Combating Antibiotic Resistant Bacteria for 95 percent
    of hospitals to report these data by 2020. Comprehensive and real-time
    data on antibiotic use and resistance are essential to inform and
    evaluate antibiotic stewardship activities and other efforts to address
    AMR.
    CDC Center for Global Health
        IDSA urges the Subcommittee to provide at least $624 million in
    fiscal year 2021 funding, including $225 million for CDC's Division of
    Global Health Protection to prevent, detect and respond to infectious
    disease threats in the places they originate before they reach American
    soil. As the response to the devastating global COVID-19 pandemic
    continues, global health security efforts are critical for ensuring
    America's health security, including strengthening laboratory
    capacities, disease surveillance and field epidemiology activities in
    resource-limited countries. Sustained funding for the Division of HIV
    and TB, a key implementer of PEPFAR, is needed to facilitate access to
    life-saving antiretroviral treatment for millions, including to
    pregnant women living with HIV to prevent transmission to their
    children. The Center works to find, cure and prevent TB, eliminate the
    global burden of malaria, stop poliovirus transmission, and reduce
    mortality from vaccine-preventable diseases like measles. The CDC
    Center for Global Health addresses more than 400 diseases and health
    threats in 60 countries.
    Immunization Program
        IDSA supports funding of $710 million for the Section 317
    Immunization Grant Program that would allow healthcare providers to
    obtain necessary vaccines. The program helps decrease the number of
    children and adults who die each year from vaccine-preventable
    illnesses and helps prevent outbreaks of diseases due to inadequate
    vaccination rates. We must strengthen our nation's vaccine
    infrastructure to prepare to drive access and uptake of a COVID-19
    vaccine once one is developed.
        Since COVID-19 distancing restrictions and business closures were
    implemented, childhood immunization rates have dropped considerably due
    to fears of contracting the virus. During the week of April 5, the
    administration of MMR vaccines dropped 50 percent; diphtheria and
    pertussis vaccines dropped 42 percent; and HPV vaccines dropped 73
    percent. Even before this pandemic, vaccine hesitancy began fueling a
    resurgence of vaccine-preventable diseases such as measles, making this
    a critically important time to invest in a comprehensive response. Many
    communities have been deemed ``at risk'' for outbreaks of measles and
    other vaccine-preventable illnesses due to insufficient vaccination
    rates. During January 1-October 1, 2019, a total of 1,249 measles cases
    and 22 measles outbreaks were reported in the United States. This is
    the greatest number of cases reported in a single year since 1992.
    Infectious Diseases Rapid Response Fund
        The quick spread of emerging infectious diseases makes clear the
    need for the Response Fund in regular fiscal year 2021 appropriations.
    At the beginning of the COVID-19 emergency, the Response Fund allowed
    HHS to begin initial activities without waiting for congressional
    action. An investment of at least $85 million is needed to ensure
    agencies, led by the CDC can move forward with initial response
    activities to contain the spread of infection; treat infected
    individuals and launch research for vaccines, diagnostics and
    therapeutics.
    Infectious Diseases and Opioids
        IDSA urges $58 million in funding in fiscal year 2021 to address
    opioid addiction, HIV/AIDS, and hepatitis. We are increasingly
    concerned about how the opioid crisis is driving higher rates of
    infectious diseases including hepatitis C, endocarditis, HIV,
    pneumonia, and skin, soft tissues, bone and joint infections. Before
    COVD-19, some of our members were reporting that 25 to 50 percent of
    their inpatient hospital consultations are for infections in patients
    who inject drugs, and this problem has not gone away.
    Vector-Borne Diseases
        We advise funding of $66 million for vector-borne diseases efforts
    to help define disease extent and to reduce the impact of infections
    such as the Zika virus and tick-borne illnesses including Lyme disease.
    CDC found that the number of disease cases in the U.S. due to mosquito,
    tick or flea bites tripled from 2004 to 2016, demonstrating the need
    for increased funding to support evidence-based surveillance and
    prevention efforts.
            assistant secretary for preparedness and response (aspr)
    Biomedical Advanced Research and Development Authority
        At least $230 million in fiscal year 2021 for the BARDA broad
    spectrum antimicrobials program and CARB-X is needed to leverage
    public/private partnerships to develop products that directly support
    the government-wide National Action Plan for Combating Antibiotic-
    Resistant Bacteria. These programs have been successful in developing
    new FDA-approved antibiotics. Despite this progress, the pipeline of
    new antibiotics in development is insufficient to meet patient needs,
    and $230 million in funding is needed to help prevent a post-antibiotic
    era in which we lose many modern medical advances that depend upon the
    availability of antibiotics, such as cancer chemotherapy, organ
    transplants and other surgeries. There is early evidence of secondary
    bacterial infections among COVID-19 patients. It is, as yet, unclear
    exactly how significant secondary bacterial and fungal infections will
    be in this pandemic, but serious viral respiratory infections typically
    pose some risk of these secondary infections that increases when
    patients need to be hospitalized or placed on a ventilator. This report
    on 191 patients found that 50 percent of patients who died had a
    secondary infection.
    Project BioShield
        We request at least $140 million in fiscal year 2021 for the
    Project BioShield Special Reserve Fund (SRF) which is positioned to
    support the response to public health threats, including AMR. BARDA and
    NIAID efforts have been successful in helping companies bring new
    antibiotics to market, but those companies now struggle to stay in
    business and two filed for bankruptcy in 2019. In December 2019, SRF
    funds supported a contract for a company following approval of its
    antibiotic--a phase in which small biotechs that develop new
    antibiotics are particularly vulnerable. Additional funding is needed
    to expand this approach to better support the antibiotics market.
                         national institutes of health
    National Institute of Allergy and Infectious Diseases (NIAID)
        Within NIH, NIAID should be funded at $6.345 billion, with $600
    million for AMR research to support the continued response to COVID-19,
    and research for new rapid diagnostics, vaccines, and therapeutics for
    all ID threats. With increased investment to combat AMR, NIAID is
    poised to ramp up valuable research into how to counter the ever-
    evolving threat posed by resistant microbes. There are significant
    research needs with regard to COVID-19, including vaccines and
    therapeutics, better diagnostics, and epidemiologic and pathogenesis
    studies. NIAID is also planning to expand efforts to support the next
    generation of researchers, but this will be challenging without
    additional resources. Funding at the requested level would enable NIAID
    to increase funding and success rates for early and mid-career research
    awards, and pilot a new innovator award to promote bold new ideas from
    early stage investigators. This kind of thinking is precisely what is
    needed to address growing ID threats.
                                   conclusion
        Thank you for the opportunity to submit this statement. The
    nation's ID physicians and scientists rely on strong Federal
    partnerships to keep Americans healthy and urge you to support these
    efforts. Please forward any questions to Lisa Cox at
    lcox@idsociety.org.

        [This statement was submitted by Thomas File, MD, FIDSA, President,
    Infectious Diseases Society of America.]
                                     ______

       Prepared Statement of the International Association of Fire Chiefs
        On behalf of the more than 13,000 chief fire and emergency medical
    services (EMS) officers of the International Association of Fire Chiefs
    (IAFC), I urge you to provide $20 million in fiscal year 2021 for the
    Rural EMS Training and Equipment Assistance (REMSTEA) program, also
    known as the Supporting and Improving Rural EMS Needs (SIREN) program,
    which is housed within the Substance Abuse and Mental Health Services
    Administration (SAMHSA). America's rural fire departments desperately
    need assistance in sustaining their operations following the
    devastation that was brought upon on their budgets by the economic
    impact stemming from the SARS-CoV-2 virus and it resulting illness,
    COVID-19. The SIREN program is one of the most effective ways in which
    Congress can provide direct assistance to these rural fire and EMS
    agencies to purchase personal protective equipment (PPE), procure
    medications, and recruit and train personnel. Funding the SIREN program
    at $20 million in fiscal year 2021 will enable these agencies to be
    prepared for future waves of COVID-19 as well as the ``routine''
    volumes of critically ill and injured patients which seek emergency
    medical care each day.
        As you know, EMS-related calls account for 80 percent of all fire
    department calls for service nationwide. EMS is even more important in
    rural and frontier communities where firefighters and EMS personnel
    might be the only the only healthcare provider that a critically ill or
    injured patient sees in the first hour of their emergency. Long
    transport distances to a hospital make it important for fire
    departments to be fully staffed and equipped with the latest emergency
    medications and medical supplies.
        Rural fire departments face acute challenges in meeting their
    community's EMS needs. These agencies often rely upon community
    fundraisers such as barbeques, bingo, raffles, and auctions to raise
    the money needed to fund their operations. While this may have once
    been a plausible funding model, these types of fundraisers are no
    longer sufficient to meet the needs of the 21st Century EMS systems.
    Furthermore, these community-based fundraising activities were
    completely shut down this year as a result of the stay-at-home orders
    and social distancing guidelines which were implemented in most
    communities across the nation. In strong financial times, these rural
    fire departments' limited budgets prevented them from having the latest
    medical equipment to treat patients or the resources to recruit and
    retain volunteer EMS personnel. The unprecedented economic downturn has
    exacerbated these financial struggles and threatens to curtail these
    agencies' response abilities or even close their departments
    completely.
        Despite the fact that fire departments and EMS agencies transport
    more than 30 million patients each year, the U.S. Department of Health
    and Human Services (HHS) provides little support to essential agencies.
    In 2018, Congress reauthorized the REMSTEA grant as the SIREN grants
    and revised the criteria to provide funding directly to the rural fire
    departments and EMS agencies. SIREN is a competitive grant program
    which helps rural fire departments to procure emergency medications and
    supplies, purchase EMS vehicles like ambulances and quick response
    vehicles, establish recruitment and retention programs to attract
    volunteers, and administer training classes to certify personnel as
    emergency medical technicians. Congress' support for local EMS agencies
    through the SIREN program is vital to ensuring that these agencies can
    continue meeting the emergency medical needs of their communities. A
    funding level of $20 million for the SIREN program in fiscal year 2021
    will help these rural fire departments be prepared to care for COVID-19
    patients as well as other patients suffering from medical emergencies,
    traumatic injuries, natural disasters, and acts of terrorism.
        I would like to thank the members of this subcommittee, as well as
    the entire United States Senate, for their work to support the fire
    departments in the response to SARS-CoV-2 and COVID-19. I look forward
    to continuing to work with each of your offices to ensure that fire
    departments have the resources, personnel, medications, and equipment
    needed to care for all types of ill and injured patients across the
    United States. The SARS-CoV-2 epidemic has placed unprecedented strains
    on fire departments and the IAFC urgently requests your assistance by
    providing $20 million for the SIREN grant program in fiscal year 2021.

        [This statement was submitted by Fire Chief Gary Ludwig, President
    and
    Chairman of the Board of Directors, International Association of Fire
    Chiefs.]
                                     ______

            Prepared Statement of the International Foundation for
                           Gastrointestinal Disorders
             fiscal year 2020 l-hhs appropriations recommendations
    _______________________________________________________________________

      --At least $44.7 billion in program level funding for the National
            Institutes of Health (NIH).
        --Proportional funding increase for the National Institute of
                Diabetes and Digestive and Kidney Diseases (NIDDK).
    _______________________________________________________________________

        Chairman Blunt, Ranking Member Murray, and distinguished members of
    the Subcommittee, as you work with your colleagues to develop the
    fiscal year 2021 Labor-Health and Human Services (L-HHS) appropriations
    bill, please keep in mind the needs and concerns of the functional GI
    and motility disorders community. ``Nearly two decades ago, I was
    diagnosed with one of these diseases, irritable bowel syndrome (IBS).
    As a young adult, I underwent extensive testing and workups over many
    years in a difficult effort to discover what was causing my symptoms
    and how best to treat them. I often relied on self-treatment as best as
    I could, but this was not sustainable. Unfortunately, I am not alone in
    these experiences. As President of IFFGD, I have heard my story echoed
    back to me by thousands of others. Patients affected by these disorders
    often face similar delays in diagnosis, frequent misdiagnosis, and
    inappropriate treatments including unnecessary and costly surgery.
    These are common concerns for our community, and they underscore the
    need for increased research, improved provider education, and greater
    public awareness.''
                              about the foundation
        The International Foundation for Gastrointestinal Disorders (IFFGD)
    is a registered nonprofit education and research organization dedicated
    to informing, assisting, and supporting people affected by
    gastrointestinal (GI) disorders. IFFGD works with patients, families,
    physicians, nurses, practitioners, investigators, regulators,
    employers, and others to broaden understanding about GI disorders,
    support and encourage research, and improve digestive health in adults
    and children.
               about gastrointestinal (gi) and motility disorders
        GI and motility disorders are the most common digestive disorders
    in the general population. These disorders are classified by symptoms
    related to any combination of the following: motility disturbance,
    visceral hypersensitivity, altered mucosal and immune function, altered
    gut microbiota, and altered central nervous system (CNS) processing.
    Some examples of functional GI disorders are: dyspepsia, gastroparesis,
    irritable bowel syndrome (IBS), gastroesophageal reflux disease (GERD),
    bowel incontinence, and cyclic vomiting syndrome. The costs associated
    with these diseases range from $25-$30 billion annually; economic costs
    are also reflected in work absenteeism and lost productivity.
                         national institutes of health
        Strengthening the nation's biomedical research enterprise through
    NIH fosters economic growth and sustains innovations that enhance the
    health and well-being of the American people. Functional GI disorders
    are prevalent in about 1 in 4 people in the U.S., accounting for 40
    percent of GI problems seen by medical providers. NIDDK supports basic,
    clinical, and translational research on aspects of gut physiology
    regulating motility and supports clinical trials through the Motility
    and Functional GI Disorders Program.
        Several of NIH's crosscutting initiatives are currently advancing
    science in meaningful ways for patients with gastrointestinal
    disorders. The Stimulating Peripheral Activity to Relieve Conditions
    (SPARC) Initiative supports research on the role that nerves play in
    regulating organ function. Methods and medical devices that modulate
    these nerve signals are a potentially powerful way to treat many
    chronic conditions, including gastrointestinal and inflammatory
    disorders. The Human Microbiome Project is also unlocking important
    discoveries that will help to inform and advance emerging treatment
    options for many in the community.
                              patient perspective
    Jacqui's Story
        I got sick after an emergency appendectomy on Thanksgiving 2010
    while I was in Army basic training. I was able to fight off the
    inevitable and did 4 years in the Army during which I did a tour in
    Afghanistan. When I got back, my health really started declining.
        I fought and fought and fought for an answer, but it took just over
    7 years to be diagnosed with gastroparesis. My main symptoms were
    nausea, vomiting and pain. It got so bad that I had to give up my dream
    career and was medically retired from the service.
        Because we had tried pretty much every conservative treatment, they
    told me I would just have to live with it. It got to the point where I
    was going weeks without eating and was in and out of the ER getting
    fluids, because anything that went in my stomach came back up. My hair
    thinned, so I shaved it, and I was having memory problems and
    confusion, which got so bad that my neuropsych tests came back with my
    score being in the range of dementia.
        My gastroenterologist even told me at one point that she couldn't
    do anything ``drastic'' to help me until my blood work was ``bad
    enough.''
        Thank you for the opportunity to submit our community's
    perspective, as you consider appropriations priorities for fiscal year
    2021. We look forward to continuing to work with you on these critical
    issues.
        Informing, assisting, and supporting people affected by
    gastrointestinal disorders.

        [This statement was submitted by Ceciel T. Rooker, President,
    International Foundation for Gastrointestinal Disorders.]
                                     ______

         Prepared Statement of the Interstate Mining Compact Commission
        We are writing in regard to the fiscal year 2021 Budget Request for
    the Mine Safety and Health Administration (MSHA), which is part of the
    U.S. Department of Labor. In particular, we urge the Subcommittee to
    support a full appropriation for state assistance grants for safety and
    health training of our Nation's miners pursuant to section 503(a) of
    the Mine Safety and Health Act of 1977 (the Act). MSHA's budget
    includes an amount of not less than $10,537,000 for state assistance
    grants. We urge the Subcommittee to fund these grants at this
    statutorily authorized level for state assistance grants so that states
    are able to meet the training needs of miners and to fully and
    effectively carry out state responsibilities under section 503(a) of
    the Act. We believe the states can more than justify the need for
    funding at the statutorily authorized level.
        The Interstate Mining Compact Commission is a multi-state
    governmental organization that represents the natural resource,
    environmental protection and mine safety and health interests of its 27
    member states. The states are represented by their Governors who serve
    as Commissioners.
        We support full funding $10,537,000 for the state assistance grants
    that enable the states to provide essential safety and health training
    for the nation's coal miners, undiminished by use of these funds for
    other purposes. Section 503 of the Act was structured to be broad in
    scope and to stand as a separate and distinct part of the overall mine
    safety and health program. In the Conference Report that accompanied
    passage of the Federal Coal Mining Health and Safety Act of 1969, the
    conference committee noted that both the House and Senate bills
    provided for ``Federal assistance to coal-producing States in
    developing and enforcing effective health and safety laws and
    regulations applicable to mines in the States and to promote Federal-
    State coordination and cooperation in improving health and safety
    conditions in the Nation's coal mines.'' (H. Conf. Report 91-761). The
    1977 Amendments to the Mine Safety and Health Act expanded these
    assistance grants to both coal and metal/non-metal mines and increased
    the authorization for annual appropriations to $10 million. The
    training of miners was only one part of the obligation envisioned by
    Congress.
        With respect to the training component of our mine safety and
    health programs, IMCC's member states are concerned that without full,
    stable funding of the State Grants Program, the federally required
    training for miners employed throughout the U.S. will suffer. Our
    experience over the past 40 years has demonstrated that the states are
    often in the best position to design and offer mine safety and health
    training in a way that insures that the goals and objectives of
    Sections 502 and 503 of the Mine Safety and Health Act are adequately
    met. We greatly appreciate Congress' recognition of this fact and this
    Subcommittee's strong support for state assistance grants, especially
    in past years when the Administration sought to eliminate or
    substantially reduce those moneys.
        We also appreciate the recognition by Congress that the
    availability of these funds to states should not be diminished by
    allowing them to be used for other purposes. A proviso in the
    Administration's proposed fiscal year 2020 budget for MSHA would have
    allowed funds from state assistance grants to be used for the purchase
    and maintenance of equipment required by the final rule entitled
    ``Lowering Miners Exposure to Respirable Coal Mine Dust, Including
    Continuous Personal Dust Monitors'' published by the Department of
    Labor in the Federal Register on May 1, 2014 (70 Fed. Reg. 24813), for
    operators that demonstrate financial need as determined by the
    Secretary. This proviso had appeared in enacted Federal budget
    legislation for several fiscal years before 2020. In our comments to
    this Subcommittee on the proposed budget for fiscal year 2020, we
    requested that this proviso be removed from the budget so that these
    vital state mine safety and health training programs could be assured
    of receiving adequate funding. We were pleased to see that this proviso
    was eliminated in the enacted Federal budget for fiscal year 2020. We
    urge Congress to reject any other similar attempt to diminish the funds
    available to states for this purpose in the budgets it adopts for
    fiscal year 2021 and future years. The budget that is adopted for
    fiscal year 2021 should include the full amount of $10,537,000 for
    state assistance grants, without any provisos or other qualifications
    that could reduce the amount of money states receive.
        Thank you for the opportunity to present our views on the proposed
    fiscal year 2021 budget for MSHA.

        [This statement was submitted by Thomas L. Clarke, Executive
    Director,
    Interstate Mining Compact Commission.]
                                     ______

          Prepared Statement of the Interstitial Cystitis Association
                summary of recommendations for fiscal year 2021
    _______________________________________________________________________

      --Provide $1.1 million for the IC Education and Awareness Program and
            the IC Epidemiology Study at the Centers for Disease Control
            and Prevention (CDC)
      --Provide $44.7 billion for the National Institutes of Heatlh (NIH)
            and Proportional Increases Across all Institutes and Centers
      --Support NIH Research on IC, Including the Multidisciplinary
            Approach to the Study of Chronic Pelvic Pain (MAPP) Research
            Network and Chronic Pain
    _______________________________________________________________________

        Thank you for the opportunity to present the views of the
    Interstitial Cystitis Association (ICA) regarding interstitial cystitis
    (IC) public awareness and research. ICA was founded in 1984 and is the
    only nonprofit organization dedicated to improving the lives of those
    affected by IC. The Association provides an important avenue for
    advocacy, research, and education. Since its founding, ICA has acted as
    a voice for those living with IC, enabling support groups and
    empowering patients. ICA advocates for the expansion of the IC
    knowledge-base and the development of new treatments. ICA also works to
    educate patients, healthcare providers, and the public at large about
    IC.
        IC is a condition that consists of recurring pelvic pain, pressure,
    or discomfort in the bladder and pelvic region. It is often associated
    with urinary frequency and urgency. This condition may also be referred
    to as painful bladder syndrome (PBS), bladder pain syndrome (BPS), and
    chronic pelvic pain (CPP). It is estimated that as many as 12 million
    Americans have IC symptoms. Approximately two-thirds of these patients
    are women, though this condition does severely impact the lives of as
    many as 4 million men. IC has been seen in children and many adults
    with IC report having experienced urinary problems during childhood.
    However, little is known about IC in children, and information on
    statistics, diagnostic tools and treatments specific to children with
    IC is limited.
        The exact cause of IC is unknown and there are few treatment
    options available. There is no diagnostic test for IC and diagnosis is
    made only after excluding other urinary/bladder conditions. It is not
    uncommon for patients to experience one or more years delay between the
    onset of symptoms and a diagnosis of IC. This is exacerbated when
    healthcare providers are not properly educated about IC.
        The effects of IC are pervasive and insidious, damaging work life,
    psychological well-being, personal relationships, and general health.
    The impact of IC on quality of life is equally as severe as rheumatoid
    arthritis and end-stage renal disease. Health-related quality of life
    in women with IC is worse than in women with endometriosis, vulvodynia,
    and overactive bladder. IC patients have significantly more sleep
    dysfunction, and higher rates of depression, anxiety, and sexual
    dysfunction.
        Some studies suggest that certain conditions occur more commonly in
    people with IC than in the general population. These conditions include
    allergies, irritable bowel syndrome, endometriosis, vulvodynia,
    fibromyalgia, and migraine headaches. Chronic fatigue syndrome, pelvic
    floor dysfunction, and Sjogren's syndrome have also been reported.
                 ic public awareness and education through cdc
        ICA recommends a specific appropriation of $1.1 million in fiscal
    year 2021 for the CDC IC Program. This will allow CDC to fund the
    Education and Awareness Program, per ongoing congressional intent, as
    well as the IC Epidemiology Study.
        CDC had shifted the focus of the IC program to an epidemiology
    study and away from education and awareness, but thanks to the
    Subcommittee the ICA and IC community have been able to open
    discussions with CDC to ensure a renewed focus on education and
    awareness activities. The IC community had been concerned that focusing
    solely on an epidemiology study instead of on education and awareness
    activities was detrimental to patients and their families. We have
    recently met with CDC thanks to the actions of this Subcommittee where
    we openly and effectively communicated the need for CDC to include ICA
    in any collaboration along with the epidemiology study. We know that
    CDC has not received as generous increases as NIH over the past few
    fiscal years, but it is important the CDC continue supporting both
    critical components of the IC Program. The CDC IC Education and
    Awareness Program is the only Federal program dedicated to improving
    public and provider awareness of this devastating disease, reducing the
    time to diagnosis for patients, and disseminating information on pain
    management and IC treatment options. ICA urges Congress to provide
    funding for IC education and awareness in fiscal year 2021.
        The IC Education and Awareness program has utilized opportunities
    with charitable organizations to leverage funds and maximize public
    outreach. Such outreach includes public service announcements in major
    markets and the Internet, as well as a billboard campaign along major
    highways across the country. The IC program has also made information
    on IC available to patients and the public though videos, booklets,
    publications, presentations, educational kits, websites, self-
    management tools, webinars, blogs, and social media communities such as
    Facebook, YouTube, and Twitter. For healthcare providers, this program
    has included the development of a continuing medical education module,
    targeted mailings, and exhibits at national medical conferences.
        The CDC IC Education and Awareness Program also provided patient
    support that empowers patients to self-advocate for their care. Many
    physicians are hesitant to treat IC patients because of the time it
    takes to treat the condition and the lack of answers available.
    Further, IC patients may try numerous potential therapies, including
    alternative and complementary medicine, before finding an approach that
    works for them. For this reason, it is especially critical for the IC
    program to provide patients with information about what they can do to
    manage this painful condition and lead a normal life. With the recent
    developments in our conversations with the CDC we are confident that we
    will continue to provide key education and awareness that will continue
    to benefit the IC community.
             ic research through the national institutes of health
        ICA recommends a funding level of $44.7 billion for NIH in fiscal
    year 2021. ICA also recommends continued support for IC research
    including the MAPP Study administered by NIDDK.
        The National Institutes of Health (NIH) maintains a robust research
    portfolio on IC with the National Institute of Diabetes and Digestive
    and Kidney Diseases (NIDDK) serving as the primary Institute for IC
    research. The NIDDK Multidisciplinary Approach to the Study of Chronic
    Pelvic Pain (MAPP) Research Network has continued to include cross-
    cutting researchers who are currently identifying different phenotypes
    of the disease. Phenotype information will allow physicians to
    prescribe treatments with more specificity. Research on chronic pain
    that is significant to the community is also supported by the National
    Institute of Neurological Disorders and Stroke (NINDS) as well as the
    National Center for Complementary and Integrative Health (NCCIH). The
    vast majority of IC patients often suffer major and multiple quality of
    life issues due to this condition. Many IC patients are unable to work
    full time because pain affects their mobility, sleep, cognition, and
    mood. These are people that simply want to lead productive lives, and
    need pain medication to do so. Due to the fact that IC is categorized
    as a non-cancer pain condition, IC patients already have a difficult
    time obtaining pain meds. IC doctors do not have time nor the
    inclination to effectively prescribe or monitor the distribution of the
    opioid class of medication. They often refer their patients to Pain
    Management Specialists, many who have never heard of IC, who often
    refuse to treat them. In addition, antidepressants and benzodiazepines
    are often used to treat both mood and sleeping disorders for IC
    patients. Additionally, the NIH investigator-initiated research
    portfolio continues to be an important mechanism for IC researchers to
    create new avenues for interdisciplinary research.
                              patient perspective
        IC is a tough disease to diagnose, and it is one of the most
    challenging things to deal with, finding a Dr. that specializes in IC
    that can help diagnose and treat. I can't stress enough how important
    finding the right Dr. is. IC patients need a Dr. who understands and is
    willing to go along with them on this long, frustrating, painful and
    confusing road. I have found strength through having this that I never
    knew I had, strength to keep going when all treatments so far have
    failed me.
        There are a small number of treatments available for managing IC
    symptoms, but they only work on a small percentage of patients. I have
    tried those treatments and some drugs that ``might'' help. I manage my
    diet, take lots of supplements and have to see all kinds of Doctors
    now. I have six! That includes holistic medicine doctors, physical
    therapists, and acupuncturist. That's along with my regular MD,
    Urologist and two different gynecologists. This is what my life has
    become. The life of an IC patient. I deal with one or more symptoms of
    IC EVERY SINGLE DAY. Some days definitely better than others, but every
    single day. It affects my life in so many ways. Work, social, travel
    and my intimate relationships. I never know how I'm going to feel from
    one day to the next. Anxiety and fear included.
        Thank you for the opportunity to present the views of the
    interstitial cystitis community.

        [This statement was submitted by Lee Lowery, Executive Director,
    Interstitial Cystitis Association.]
                                     ______

              Prepared Statement of the Jamestown S'Klallam Tribe
        Chairman Blunt, Ranking Member Murray and distinguished members of
    this Subcommittee, on behalf of the Jamestown S'Klallam Tribe, I would
    like to thank you for this opportunity to submit written testimony on
    our funding priorities and recommendations for the fiscal year 2021
    appropriations process for the Department of Labor, the Department of
    Health and Human Services, and the Department of Education.
                               covid-19 pandemic
      --Fund Tribal Fishers and Tribal Employees Unemployment Benefits
      --Provide Tribes a Robust Share of the $1.5 Billion DoE Post-
            Secondary Education Account
          tribal specific health & education appropriation priorities
      --Fund Medicare/Medicaid Expansion
      --ESSA Title VII Impact Aid--$2 Billion
      --Child Welfare Programs Tribal Allocations Subpart 1, $5.5 million;
            Subpart 2, $3.3 million
      --Older Americans Act Title VI, Part A, B Native American Nutrition
            and Supportive Services--$43 million
                               national requests
      --Special Diabetes Program for Indians--$200 Million
      --Alcohol and Substance Abuse Treatment--$503.9 Million
        Our Tribal Communities are now on the front lines dealing with the
    urgency, infection rate, and death toll of the COVID-19 pandemic and it
    has become increasingly clear that Tribal Governments need
    significantly more funding and resources to prevent the loss of human
    life. In order to prevent Tribes from facing legal and regulatory
    barriers to fighting this pandemic, Indian Country must be explicitly
    included in any legislative or policy funding vehicle that is being
    advanced and there must be allowance for greater flexibility in the
    application and use of funds.
                               covid-19 pandemic
    100 Percent Fund Tribal Fishers and Tribal Employees Unemployment
            Benefits
        Tribes in Washington State have an agreement with the State whereby
    Tribes self-ensure rather than participate in FUTA. This agreement has
    worked well for the Tribes under the normal termination of employee's
    process. However, the COVID-19 pandemic presents new challenges that
    were unforeseen at the time of entering these State agreements. The
    copious revenue loss by the Tribes has been devasting and continues to
    increase. Tribes should recover 100 percent of the unemployment
    benefits extended to Tribal fishers and employees because of Covid-19.
    Tribal unemployment recipients should also receive supplemental income
    that is made available to other unemployed recipients and included in
    the COVID-19 relief legislation.
    Tribes Share in $1.5 Billion for Department of Education Post-Secondary
            Education Account
        Emergency Funding for Tribes to address the educational needs of
    Indian students must also be provided. Provide a robust share of the
    $1.5 Billion for the Department of Education Post-Secondary Education
    Account to Tribal Colleges and Universities and Educational
    Institutions serving AI/AN students; Provide $40 Million for the
    extension of classes for AI/AN students for at least four (4) months;
    and Ensure access to healthy meals for all AI/AN that are impacted by
    school closures.
          tribal specific health & education appropriation priorities
        Fund Medicare/Medicaid Expansion.--It is vital that the Federal
    Government continue to fully fund Medicaid for eligible AI/AN because
    the 3rd party revenue is used to supplement Tribal health programs due
    to inadequate IHS funding. AI/AN must also be exempted from the cost
    sharing provision under Medicare. The Medicaid/Medicare system is a
    critical lifeline to our community and coupled with our innovative
    approach to healthcare is an effective and efficient use of the Federal
    investment resulting in better health services and reduced healthcare
    costs. Tribal consultation is required before any changes, such as,
    work requirements or block grants are instituted.
        ESSA Title VII Impact Aid--$2 Billion.--Currently, 93 percent of
    Native students are enrolled in local public schools. Impact Aid
    provides direct essential funding to public schools serving Native
    students and should be forward funded to avoid the need for cost
    transfers and other funding issues. Our mission to enhance self-
    reliance, self-sufficiency and developing strong intellectually astute
    Tribal citizens includes providing opportunities for personal growth
    through education. Education is extremely important to our Tribe and
    continued and increased funding for ESSA Title VII is needed to not
    only ensure the success of our students and future Tribal leaders but
    to secure the welfare and vitality of our Tribal community and culture.
        Child Welfare Programs Title IV B (subpart 1)--$280 Million Tribal
    Allocation $5.5 Million & Promoting Safe and Stable Families Social
    Security Act Title IV B (subpart 2) $110 Million Tribal Allocation $3.3
    Million.--Title IV B provides funding to Tribes to support community-
    based child welfare services. Tribal tradition and culture are an
    integral component of Tribal child welfare programs because it has been
    proven that culturally tailored programs and services lead to better
    outcomes for AI/AN children and families. Cultural integration leads to
    increased community participation and support for these programs which
    in turn results in a more effective response rate. Promoting Safe and
    Stable Families provides funding for coordinated culturally appropriate
    child welfare services. Maximum flexibility in the use of these funds
    is essential to allow Tribes to provide ancillary services, including,
    parenting classes, conducting home visits, and addressing issues, such
    as, alcohol and substance abuse that have a direct correlation to
    American Indian/Alaska Native children becoming integrated into the
    child welfare system. The goal of these programs is to keep children
    with their families and Tribal communities.
        Older Americans Act Title VI--$43 Million.--Title VI programs fund
    nutritional and other direct supportive services to AI/AN elders.
    Reducing isolation through community and cultural activities and
    ensuring our Elders receive proper nutrition and healthcare is a
    priority for our Tribe. Title VI of the Older Americans Act is the
    primary funding source for the provision of these programs and
    services. Our meal delivery program has been in service for over 20
    years and serves over 1100 meals per month on average to 80 elders.
    Providing support services to our elders is deeply rooted in our
    beliefs and ensures the survival of our culture, traditions, and
    language. Our elders are the pathway to the past, present and future
    for the next seven generations.
              national health & education appropriation priorities
        Special Diabetes Program for Indians--$200 Million.--The Special
    Diabetes Program for Indians is a critical program that is saving lives
    in our Tribal communities. This program has grown to become one of this
    nation's most strategic and effective Federal investments that is
    addressing the diabetes epidemic in Indian country. Tribes request
    permanent reauthorization, remaining a mandatory rather than
    discretionary appropriation and a minimum increase of $50 million for a
    total of $200 million for SDPI.
        Alcohol and Substance Abuse Treatment--$503.9 Million.--Alcohol and
    Substance abuse has plagued Tribal communities for years and an
    increase is needed to break the cycle. Tribal communities will continue
    to struggle with addiction and the inter-related social issues unless
    targeted funding is provided to Tribes to address these issues in a
    culturally appropriate way.
        The Jamestown S'Klallam Tribe continues to support the requests and
    recommendations of the Portland Area Indian Health Board, the National
    Indian Health Board, and the National Congress of American Indians.
    Thank you.

        [This statement was submitted by W. Ron Allen, Tribal Chairman/CEO,

    Jamestown S'Klallam Tribe.]

                                     ______

                   Prepared Statement of Jennings Susan  deg.
                      Prepared Statement of Susan Jennings
        Chairman Blunt, Ranking Member Murray and Subcommittee Members,
        Thank you for your public service and for affording families the
    opportunity to submit testimony.
        I have recently learned that the House passed its fiscal year 2021
    LHHS spending bill and that the bill recommends increases or level
    funding for four programs administered by HHS/Administration for
    Community Living, the Developmental Disabilities and Bill of Rights Act
    (DD Act) programs, including the Federal DD Act program that is working
    to eliminate all intermediate care facilities (ICF's) in the state of
    Pennsylvania. See testimony below submitted May, 2020.
        I learned that the House fiscal year 2021 LHHS spending bill does
    not include the report language protecting ICF care and we families in
    Pennsylvania are deeply worried and I am re-submitting my testimony for
    your consideration. On behalf of Joey and KIIDS, I respectfully request
    that the attached Report Language be included in the Senate fiscal year
    2021 LHHS spending bill.
        I am Susan Jennings of Mansfield, Pennsylvania. My interest in
    providing testimony is because of my son Russell ``Joey'' Jennings,
    aged 28, who suffers from severe autism, intellectual disability and
    co-morbid psychiatric disorders. I submit this testimony on behalf of
    KIIDS--Keeping Individuals with Intellectual Disabilities Safe, a
    statewide organization of the friends and families of Pennsylvania
    State Developmental Centers. Most, but not all, members of KIIDS have
    loved ones with disabilities receiving residential treatment services
    in one of Pennsylvania's four human development centers which are
    Medicaid-certified intermediate care facilities (ICFs).
        Our family went through the journey parents travel when they learn
    that their children have conditions which cannot be healed: denial,
    grief, and despair. We worked hard to meet Joey's needs when he was
    younger. As he grew into a strong youth, his care became beyond our
    capacities. A growing percentage of the population with disabilities
    should have the centralized structured support of institutional systems
    of care. Joey is one of those.
        KIIDS requests relief from Department of Health and Human Services'
    (HHS') programs and policies which undermine and eliminate our state's
    much-needed specialized residential treatment programs. I implore you
    to halt the use of Federal funds by HHS programs and policies to
    achieve the deinstitutionalization of at-risk persons like our son and
    his peers from their safe intermediate care facility (ICF) homes.
                      hhs dd act programs in pennsylvania
        It is clear to me and other parents of disabled persons residing in
    state developmental centers that HHS through its grants to programs
    created under the Developmental Disabilities Assistance and Bill of
    Rights Act (last reauthorized in 2000) has been responsible for many of
    the groups intent on closing our state's larger residential centers for
    persons with cognitive deficits and other developmental disabilities.
    The DD Act programs are: (1) State Councils on Developmental
    Disabilities, (2) Protection and Advocacy (P&A) systems and (3)
    National Network of University Centers for Excellence in Developmental
    Disabilities Education, Research and Service (UCEDD) programs.
        I am new in learning about the role that HHS plays in shaping long
    term care policies for persons with developmental disabilities because,
    relatively speaking, our family is new to the need for safe residential
    care for our son. I am new to learning about the HHS funded DD Act
    programs, that there have been no oversight hearings on them for the
    past 20 years and that they receive a steady stream of unchecked
    Federal funds, that they have insufficient oversight. I submit that the
    general public would not support the DD Act programs' work to eliminate
    the option of institutional care for persons unable to care for
    themselves, which is sometimes called ``inclusion.''
        Examples of deinstitutionalization work by DD Act programs in
    Pennsylvania are:

          (1) PA DD Council: a grant of $50,000.00 for the period March,
            1994--to February, 1995 was awarded by Pennsylvania
            Developmental Planning Council to the advocacy organization the
            Arc. Purpose of the grant: ``To develop strategies for
            overcoming the obstacles to closing institutions for persons
            with mental retardation including but not limited to economic,
            political and attitudinal barriers.'' Attachment 1,
          (2) PA P&A: the Pennsylvania Protection and Advocacy program
            brought Federal lawsuits which resulted in the closure of
            Western Center and Embreeville Center.
          (3) PA UCEDD: on September 24, 2019, the Director of the
            Pennsylvania UCEDD program (Temple University Institute on
            Disabilities) appeared before the Commonwealth's Senate Health
            and Human Services legislative hearing in her official capacity
            and urged the closure of Polk Center and White Haven Center,
            two of the PA State ICF programs.

        HHS through its DD Act programs and other long term care policy
    programs and grants is on a disastrous path of closing institutional
    (ICF) programs in favor of ``Community'' (Home and Community Based
    Service) programs.
                                 nowhere to go
        My own severely autistic son's life is a case study in the
    superiority and effectiveness of care in an ICF versus the suffering
    and abuse he sustained in the ``Community'' HCBS model of care. He was
    discharged from no less than 6 different community group homes,
    administered by 3 different state providers, who offloaded him into 5
    different psychiatric facilities in the short span of 4 years' time.
    During his stay in ``Community'' services, he suffered a broken eye
    socket, toxic overmedication, and exposure to pornography. He was
    rescued by a Pennsylvania State Developmental Center (ICF) which
    affords him quality of life and freedom from abuse.
        My son is not an anomaly and he is not alone. According to the
    National Alliance on Mental Illness, 500,000 autistic adults will be
    coming of age in the next 5-7 years. Roughly between 10 percent and 50
    percent of those adults will have the same severe impairments and
    dangerous behavioral challenges as my son. If
    ``deinstitutionalization'' and the elimination of appropriate
    residential care facilities continue, there will be a catastrophic
    shortage of housing and effective services for these adults. With an
    autism birthrate of 1 in 54, according to the CDC, this is a pressing
    issue at this time in our nation's history. These young adults will
    have nowhere to go except into a revolving door of failed ``Community''
    placements, retro-fitted Hospital Emergency Rooms, psychiatric wards
    and jail cells, at great cost to taxpayers, families and traumatized
    vulnerable young autistic adults. See ``Nowhere to Go: Young People
    with Severe Autism Languish in Hospitals,'' Kaiser Health News,
    September 26, 2017
        We respectfully request your consideration for report language in
    the fiscal year 2021 LHHS spending bill barring Federal funds from
    incentivizing states to close their specialized facilities for persons
    unable to care for themselves. Suggested Report Language for fiscal
    year 2021LHHS Spending Bill, Attachment 2.
        Respectfully submitted,

        KIIDS--Keeping Individuals with Intellectual Disabilities Safe
        By: Susan Jennings
                                     ______

                    Prepared Statement of Johnson & Johnson
        On behalf of Johnson & Johnson's 132,000 global employees, I am
    pleased to provide written testimony to the House Appropriations
    Subcommittee on Labor, Health and Human Services, Education and Related
    Agencies in support of increased funding for the National Institutes of
    Health (NIH) fiscal year 2021 budget.
        Robust funding for NIH is necessary to ensure that the agency has
    the continued ability to fuel innovation in medical research, improving
    the trajectory of healthcare in the United States and around the world.
    This funding request also represents what is required to remain
    competitive in addressing emerging health threats confronting the
    United States and to encourage the pursuit of innovative solutions
    essential in addressing these increasingly complex challenges.
        As a physician and scientist, I have dedicated much of my life to
    translating basic scientific research into medical advances. In my role
    as Global Head of Johnson & Johnson External Innovation and as a board
    member of Research! America, the nation's largest not-for-profit
        public education and advocacy alliance, and the American
    Association for Cancer Research, I am deeply aware of the value of our
    nation's investment in research.
        In the United States, the majority of medical research into the
    root causes of disease is publicly funded by the NIH through research
    grants to more than 2,500 institutions across the country. The
    invaluable research conducted by NIH-funded investigators represents
    the building blocks of scientific discovery, enabling healthcare
    companies to expand upon this research to transform scientific findings
    into the breakthrough healthcare products of tomorrow. Furthermore, NIH
    research often makes possible the business case for the enormous, at-
    risk investment and effort it requires to discover, develop and guide
    an important new medical treatment through the regulatory process and
    to patients in need.
        At Johnson & Johnson, we make a commitment to create life-enhancing
    innovations and to produce value through partnerships that will
    profoundly change the trajectory of health for humanity. To that end,
    in 2019, Johnson & Johnson invested nearly $11.4 billion in research
    and development across our pharmaceutical, consumer and medical device
    companies. Our teams of scientists work tirelessly to accelerate the
    translation of scientific discoveries into meaningful solutions for
    patients and consumers. Much of our work, and that of scientists across
    the industry, would not be possible without the constant progression of
    the understanding of underlying disease biology--precisely the type of
    research funded by the NIH.
        In addition, Johnson & Johnson recognizes the crucial importance of
    early-stage companies and the critical role NIH plays in supporting
    these small businesses through Small Business Innovation Research
    (SBIR) and Small Business Technology Transfer (STTR) funding.
        Through our J&J Innovation Centers, entrepreneurs and startups can
    discuss the innovative ideas they're working on and seek to collaborate
    with Johnson & Johnson scientists, our global expertise and resources
    to accelerate what they are working on. Through Johnson & Johnson
    Innovation--JJDC they may obtain venture capital funding to support
    their innovations. At Johnson & Johnson Innovation--JLABS incubator
    sites, we support the life sciences ecosystem by helping entrepreneurs
    and scientists realize their dreams of creating healthcare solutions
    that improve lives by identifying and nurturing highly innovative ideas
    in areas of potentially disruptive, cutting-edge research, which may
    lead to novel platforms, products or technologies. These are advances
    that the scientific community could only imagine several years ago, yet
    they are becoming a reality today through the support of public-private
    partnerships like these.
        The work of the NIH is tied not only to innovation and the vitality
    of the life sciences, but also to the health of our national economy.
    NIH is the lifeblood of basic healthcare research for America, and is
    also an incredible economic engine. In fiscal year 2019, NIH research
    funding directly and indirectly supported over 475,000 jobs and spurred
    nearly $81.3 billion in new economic activity. Moreover, the pace of
    medical research must keep up with the aging of our population and
    emerging microbial threats. There is an urgent need, both on the
    individual and socioeconomic level, for strategies to prevent illnesses
    associated with aging or lifestyle. Diseases such as Alzheimer's,
    diabetes, cancer and heart disease threaten to overwhelm our healthcare
    system in a matter of years with enormous costs of care if we do not
    find ways to prevent, intercept, treat and cure them.
        Investments in medical research at the end of the 20th century by
    the Federal Government and private life sciences companies, combined
    with the work of industry and NIH-funded investigators across the
    country, have produced fundamental scientific advances, vast new
    datasets and increasingly sophisticated areas of scientific research.
    As the NIH is working on projects in areas like precision medicine,
    gene therapy and vaccines to prevent infectious diseases, there has
    never been a more critical and promising time to work in medical
    research.
        Johnson & Johnson believes that fully and consistently funding the
    NIH represents a commitment to fueling innovation in medical research.
    It is also a commitment to our communities by advancing science to
    match medical need, to our current and future generations of scientists
    by stimulating the life sciences ecosystem, and to the prosperity of
    our nation as a worldwide leader in medical research. Sustainable,
    robust investment is needed to strengthen this research and to realize
    its benefits for improving people's lives and reducing the burden and
    associated costs of today's major diseases in the United States and
    around the world.

        [This statement was submitted by William N. Hait, MD, PhD, Global
    Head,
    Johnson & Johnson External Innovation.]
                                     ______

              Prepared Statement of Kansas Neurological Institute
                             Parent Guardian Group
        Chairman Blunt, Ranking Member Murray, and Committee Members, Thank
    you for the opportunity to submit testimony.
        There is a fierce ideological battle to eliminate all Intermediate
    Care Facility options where defenseless individuals, affected with the
    most profound disabilities have access to the supports they need (ICFs/
    IID). These Medicaid approved facilities often disparagingly referred
    to as institutions. The distortion of truth before this and other
    Congressional Committees is often presented by well funded entities and
    so-called ``subject matter experts''. What is missing from their
    testimonies is the mounting number of tragedies occurring in community
    settings nation-wide. This troubling discrimination against defenseless
    individuals is based on a questionable agenda, and involves the use and
    mis-use oof millions of dollars through HHS funding.
        Having raised my grandson, who is affected with profound autism,
    and who routinely exhibits extreme, maladaptive and dangerous
    behaviors, I am well aware first-hand of the diminishing, unsustainable
    aspects of ``inclusion'' ideology in community settings. The number of
    community deaths and community abuse nationwide against helpless I/DD
    individuals who did not choose to be born this way, are mounting and
    have been mounting for more than two decades. Yet the forced ``trend''
    of ICF facility closures across the nation continues.
        The connection between appropriations work, the Senate LHHS
    Subcommittee, funding of the Department of Health and Human Services
    programs and grants, and policies adversely affecting the weakest
    members of society by closing admissions to ICF programs is striking.
    Robust Congressional oversight is desperately needed of DD Act related
    grants and programs.
                                    request
        Our families respectfully request inclusion of attached report
    language, to be included in the fiscal year 2021 LHHS spending bill,
    which would bar Federal funds from incentivizing states to close
    specialized facilities designed to provided adequate support for our
    highest-risk loved ones. These individuals are our children,
    grandchildren, brothers, sisters and friends.
        Thank you for serious consideration in honoring requests herein.
    Extensive documentation of nationwide community tragedies in this arena
    is available upon the Committee's/Sub-committee's request.

        Respectfully.

        [This statement was submitted by Joan Kelley, Vice-President,
    Kansas
    Neurological Institute Parent Guardian Group.]

                                     ______

                   Prepared Statement of Komen Susan G.  deg.
                      Prepared Statement of Susan G. Komen
        Susan G. Komen (Komen) is the world's leading nonprofit breast
    cancer organization, representing the millions of women and men who
    have been diagnosed with breast cancer. Komen has an unmatched,
    comprehensive 360-degree approach to fighting this disease across all
    fronts--we advocate for patients, drive research breakthroughs, improve
    access to high quality care, offer direct patient support and empower
    people with trustworthy information. Komen is committed to supporting
    those affected by breast cancer today, while tirelessly searching for
    tomorrow's cures. We advocate on behalf of the estimated 279,100 women
    and men in the United States who will be diagnosed with breast cancer
    and the more than 42,690 who will die from the disease in 2020 alone.
    Breast screening and diagnostic services allow us to catch potential
    cancers at earlier stages often yielding better outcomes for patients
    and resulting in decreased financial pressure on our healthcare system.
    To this end, Komen is requesting that Congress fully fund the Centers
    for Disease Control and Prevention's (CDC) National Breast and Cervical
    Cancer Early Detection Program (NBCCEDP) at the authorized amount of
    $275 million in fiscal year 2021.
        Established in 1990 with the passage of the Breast and Cervical
    Cancer Mortality Prevention Act, NBCCEDP plays a critical role in
    helping low-income, uninsured, and underinsured women who do not
    qualify for Medicaid access breast and cervical cancer screening and
    diagnostic services that are free or low-cost. The covered services
    include: clinical breast examinations, mammograms, pap tests, pelvic
    examinations, human papillomavirus (HPV) tests, diagnostic tests if
    results are abnormal, and referrals to treatment, education and case
    management.
        Since its inception, NBCCEDP-funded programs have served more than
    5.6 million women, provided more than 13.3 million breast and cervical
    cancer screenings, and diagnosed more than 68,486 invasive breast
    cancers, and 4,720 invasive cervical cancers. In program year 2018 (the
    most recent data available), the program screened 276,417 women for
    breast cancer, diagnosing 2,599 invasive breast cancers and screened
    135,148 women for cervical cancer, diagnosing 159 invasive cancers.
    More than 2.6 million women remain eligible for NBCCEDP breast cancer
    screening services. However, at current funding levels ($197 million in
    fiscal year 2020), the program serves around 10 percent of those
    eligible.
        The program functions as a Federal-state partnership, under which
    states are required to satisfy a 1:3 matching obligation ($1 in state
    funding, monetary or in-kind, for every $3 in Federal funds provided to
    that state). Currently, the Federal Government provides program funding
    to all 50 states, the District of Columbia, six U.S. territories, and
    13 American Indian/Alaska Native tribes or tribal organizations.
    Uninsured and underinsured women at or below 250 percent of the Federal
    poverty level, ages 40-64 are eligible for breast cancer screenings
    services through NBCCEDP. Each state program operates within the
    national framework of legislation, policy, and oversight; however,
    programs vary in funding, infrastructure, populations served, and
    geographical barriers. State programs are charged with implementing
    strategies to reach women in underserved areas, as well as adopting
    operational models that fit their unique populations and demographics.
    Programs can prioritize the population they serve based on their cancer
    burden, environment, available resources, and goals. Unfortunately,
    these are often influenced and limited by state funding and legislative
    constraints.
        NBCCEDP faces several challenges, most notably funding. The program
    funding has been targeted for cuts based on the assumption that more
    women will heave health coverage as a result of the Affordable Care Act
    (ACA) and thus would be able to get the services elsewhere. However,
    challenges remain for women who live in states that have limited
    Medicaid eligibility, fail to obtain insurance coverage, have limited
    health literacy, and face language barriers. We recently heard from a
    patient in California, ``I am grateful for the screening program to
    have been here for me. I had a mammogram through the program and the
    results were abnormal and I needed further studies. Unfortunately, I
    was diagnosed with breast cancer. I am grateful that I found the cancer
    at the very beginning stage and I only had to have a lumpectomy and
    after treatment I am doing great.'' The NBCCEDP is even more critical
    today when many Americans are facing financial and insurance insecurity
    due to the COVID-19 crisis.
        Increasing NBCCEDP funding is key to achieving Komen's Bold Goal of
    reducing the number of breast cancer deaths by 50 percent by 2026. The
    availability of the NBCCEDP impacts every taxpayer, and people in every
    Congressional district, as the uninsured will eventually show up at our
    states' hospitals with late-stage diagnoses, putting an even greater
    strain on the patients, the health system and state budgets. Increasing
    funding for NBCCEDP will allow the CDC and its grantees the ability to
    pursue important goals such as implementing innovative strategies to
    find eligible women who have not yet benefitted from the program due to
    lack of access to care or lower incomes, education, or health literacy.
        Ensuring adequate NBCCEDP funding is key to ensuring that low-
    income, uninsured and underinsured women continue to have access to
    vital screening and diagnostic services, providing newly insured women
    access to health education and patient navigation services, as well as
    enabling proper monitoring of state and local breast cancer patterns
    and trends. Please support increased funding for NBCCEDP in the fiscal
    year 2021 Labor, HHS, Education Appropriations Bill so that more women
    can be screened, diagnosed and treated for breast cancer. Recognizing
    the challenging budget and public health crises facing our nation, we
    ask that Congress at least maintain the current NBCCEDP funding level
    to avoid any losses of coverage or access to needed breast imaging.

        [This statement was submitted by Molly Guthrie, Director, Public
    Policy and
    Advocacy.]
                                     ______

                      Prepared Statement of LEAD Coalition
        Chairman Shelby, Vice Chairman Leahy, Chairman Blunt and Ranking
    Member Murray, Chairman Hoeven and Ranking Member Merkley, Chairman
    Moran and Ranking Member Shaheen, thank you for receiving this
    testimony. Today, the LEAD Coalition submitted a more detailed letter
    (see: http://www.leadcoalition.org/2020/05/22/fy2021-appropriations/)
    to your offices signed by nearly 200 patient advocacy organizations and
    health non-profits, philanthropies and foundations, trade and
    professional associations, academic research and clinical institutions,
    home and residential care providers, biotechnology and pharmaceutical
    companies, and leading university-based researchers. This summary
    testimony highlights vital fiscal year 2021 appropriations increases to
    address immediate needs of people living with dementia and the
    scientific research that will produce effective pharmacological and
    non-pharmacological interventions to prevent, treat and eventually cure
    Alzheimer's disease and related forms of dementia (including
    cerebrovascular disease, Lewy body dementia, frontotemporal
    degeneration and Creutzfeldt-Jakob disease). We sincerely thank you for
    recognizing and decisively responding to these challenges in the fiscal
    year 2020 appropriations package. Continuing the momentum in fiscal
    year 2021 is a national priority, an economic and budgetary necessity,
    a health and moral imperative. Specifically, we request that the fiscal
    year 2021 appropriations bills include at least the following minimum
    increases:
      --a $354 million increase for National Institutes of Health (NIH)
            research on Alzheimer's disease and other forms of dementia to
            accelerate progress as articulated in the NIH Bypass Budget
            Proposal for fiscal year 2021
      --a $500 million increase for aging research across the NIH, in
            addition to the funding for dementia-specific research, to
            ensure that the NIH has the resources to address the many other
            age-related chronic diseases that affect people with dementia
      --a $3 billion increase for the NIH, including funds from the 21st
            Century Cures Act for targeted initiatives, as recommended by
            the Ad Hoc Group on Medical Research
      --a $120 million increase for the FDA, in addition to funds included
            in the 21st Century Cures Act for targeted initiatives, as
            recommended by the Alliance for a Stronger FDA
      --funding recommendations established in the recent Older Americans
            Act reauthorization (Supporting Older Americans Act of 2020,
            H.R. 4334) for all OAA programs and services, as recommended by
            the Leadership Council of Aging Organizations
      --a $8.5 million increase for the ACL/AOA Alzheimer's Disease Program
            Initiative
      --$20 million in new funds for the CDC to implement the BOLD Act
      --a $3 million increase for the DoJ Missing Americans' Alert Program
        We also recommend that the fiscal year 2021 appropriations bill
    report language direct HHS to:
      --report to Congress within 90 days consensus dementia-specific
            pandemic preparedness and response action steps to be
            implemented by Federal, state and local governments along with
            relevant non-governmental organizations; and
      --set a national, measurable, time-bound impact goal to reduce
            dramatically dementia prevalence and deliver an implementation
            plan to Congress within 180 days, with annual progress updates
            provided to Congress and the National Alzheimer's Project Act
            Federal advisory committee.
        As the COVID19 pandemic has brought into starker relief, there are
    few more compelling or complex issues to confront our aging society,
    now and over the coming decades, than Alzheimer's disease and other
    forms of dementia. These neurodegenerative conditions impose enormous
    costs to our nation's health, prosperity, and social fabric. These
    costs are skyrocketing and unsustainable for families, public and
    private insurers, and our nation's economy. Currently, more than 5.8
    million Americans have dementia, with combined healthcare and long-term
    care costs of $305 billion. Taxpayers foot about two-thirds of that
    bill--$206 billion--directly through the Medicare and Medicaid
    programs. Individuals with dementia and their families pay out of
    pocket for another fifth of the cost, $66 billion. More than 16 million
    Americans provide unpaid care for someone with dementia, resulting in
    additional healthcare and economic costs. Today, as another person
    develops the disease every 65 seconds, Alzheimer's and other forms of
    dementia impose a nearly $550 billion loss in public and private
    expenditures along with uncompensated caregiving. By 2050, someone in
    the United States will develop the disease every 33 seconds with as
    many as 13.8 million Americans living with dementia. This explosive
    growth will cause direct costs to increase from an estimated $305
    billion in 2020 to $1.1 trillion in 2050 (in 2020 dollars) and the
    hidden costs of uncompensated caregiving to be even more staggering.
    Alzheimer's disease contributes to the deaths of more than 500,000
    Americans each year. Alzheimer's disease is the third leading cause of
    death in the United States and--despite a powerful body of evidence for
    risk-reduction strategies, which is being expanded with significant NIH
    investments--the only one among the top 10 for which there is not yet a
    proven means of prevention, disease modification or cure. One third of
    older Americans die with Alzheimer's disease or another form of
    dementia.
        The choice before our nation is not whether to pay for dementia--we
    are paying dearly. The question is whether we will emulate the
    investment strategies that have led to remarkable progress in fighting
    other leading causes of death such as cancer, HIV/AIDS and heart
    disease and achieve similar breakthroughs, or spend trillions to care
    for tens of millions of people. A modernized and more robust research
    portfolio along with rationale and compassionate investments in better
    support services can help America prevent this catastrophe and move us
    closer to achieving our national goal of preventing and effectively
    treating dementia by 2025. The congressional appropriations committees
    along with Federal agencies have moved mountains to create additional
    resources, public-private partnerships, and a culture of urgency.
    Across the NIH, institutes are advancing promising research into
    Alzheimer's disease and other forms of dementia to: understand genetic
    risk factors; address health disparities among women, African
    Americans, Hispanics, and persons with intellectual and developmental
    disabilities; understand Down syndrome's relationship to Alzheimer's
    disease; pursue cutting-edge trials aimed at preventing or
    substantially slowing disease progression by administering treatments
    much earlier in the disease process; and improve quality of life for
    people with dementia and their caregivers. In fiscal year 2021, the
    National Institute on Aging plans to intensify its research focus on
    better understanding the basic biology of underlying dementia,
    characterizing novel biomarkers and screening tools such as a blood
    test, identifying and testing innovative drug targets, supporting
    clinical trials and infrastructure like the Alzheimer's Clinical Trials
    Consortium, and improving the diagnosis, care, and support of those
    living with dementia. The FDA is encouraging new research avenues and
    clarifying regulatory approval pathways. This year, FDA is expected to
    review new products to address some of the most heart-breaking symptoms
    of dementia along with what would be the first disease modifying
    therapy.
        The investments we recommend for Older Americans Act services, BOLD
    Act implementation and other vital programs are relatively small but
    crucial complements to vastly larger Medicaid and Medicare expenditures
    to protect and promote the wellbeing of people living with dementia and
    their caregivers. As urgently as resources are needed to enable
    scientific breakthroughs, the millions of Americans currently living
    with dementia and their family caregivers deserve strengthened
    commitments to protect and enhance their quality of life.
        Thank you for considering our views and for your commitment to
    overcoming Alzheimer's disease and other forms of dementia.

        [This statement was submitted by Ian Kremer, Executive Director,
    LEAD
    Coalition (Leaders Engaged on Alzheimer's Disease).]

                                     ______

                  Prepared Statement of Linkin Victoria  deg.
                     Prepared Statement of Victoria Linkin
        My 22-year-old daughter needs help and has been unable to find it
    in this broken system. She's now on her 6th hospital stay since first
    experiencing mental illness 1 year ago after returning home from
    college. There are no long-term facilities in my state (Nevada). Our
    insurance forces her to be released from acute care before she is
    ready, and winds up hospitalized again within a few days.
        Society and the government put the tremendous burden on the
    families to care for our schizophrenic/schizoaffective loved ones. We
    are not equipped to handle this disease nor do we have the expertise.
    If my daughter had cancer or was a drug addict, she would have access
    to a plethora of treatment options. Why are serious mental health
    conditions treated any differently? She has a disease of the brain, why
    aren't we afforded the resources to help combat the effects of this
    debilitating disease?
        Because we lack necessary resources, most individuals with mental
    health diseases wind up homeless or in jail. Why is this disease
    criminalized? Why must we wait for a jail sentence so that they will
    qualify for financial aid and treatment? They need a village, they need
    hope and a place in our communities, a system that requires them to
    take medication. We need help with the financial burden of housing
    them, especially while they are unmedicated, undergoing psychosis and
    resistant to help. This is a human rights issue. This ongoing crisis is
    unmanageable.

        Sincerely.
                                     ______

        Prepared Statement of the Lymphatic Education & Research Network
                              key recommendations
    _______________________________________________________________________

      --Provide the National Institutes of Health (NIH) with $44.7 billion
            for fiscal year 2021 and advance lymphatic disease research by
            expanding resources and encouraging better coordination among
            relevant institutes and centers.
      --Establish a National Commission on Lymphatic Disease Research at
            the NIH to identify emerging opportunities, challenges, gaps,
            structural changes, and recommendations on lymphatic disease
            research.
      --Provide the Centers for Disease Control and Prevention (CDC) with
            $8.3 billion for fiscal year 2021 and enable programmatic
            activity on chronic disease education and public awareness.
    _______________________________________________________________________

        Chairman Blunt, Ranking Member Murray, and distinguished members of
    the Subcommittee, thank you for the opportunity to submit the
    priorities of the lymphatic diseases community you as you consider
    fiscal year 2021 appropriations for the National Institutes of Health
    (NIH) and the Centers for Disease Control and Prevention (CDC).
                                  about le&rn
        The Lymphatic Education & Research Network (LE&RN) is an
    internationally recognized non-profit organization founded in 1998 to
    fight lymphatic diseases and lymphedema through education, research and
    advocacy. With chapters throughout the world, LE&RN seeks to accelerate
    the prevention, treatment and cure of these diseases while bringing
    patients and medical professionals together to address the unmet needs
    surrounding lymphatic diseases, which include lymphedema and lipedema.
                    about lymphedema and lymphatic diseases
        The lymphatic system is a circulatory system that is critical to
    immune function and good health. When it is compromised and lymph flow
    is restricted, the physical impact to patients can be devastating, life
    altering, and can lead to shortened lifespan. Lymphedema (LE) is one
    such lymphatic disease. LE is a chronic, debilitating, and incurable
    swelling that can be a result of cancer treatment, inherited or genetic
    causes, and damage to the lymphatic system from surgery or an accident,
    or from parasites as in lymphatic filariasis. Stanford University
    estimates that up to 10 million Americans have lymphedema. This
    represents more Americans than those living with AIDS, Multiple
    Sclerosis, Parkinson's disease, Muscular Dystrophy and ALS--combined.
    The World Health Organization puts the global number of people with
    this disease at 250 million. There is no cure. There is no approved
    drug therapy. And there are currently only three drug studies worldwide
    seeking a treatment. Psychosocially bruised by a disease that leaves us
    deformed, we do our best to hide our lymphedema.
        Lymphedema is an equal opportunity disease, affecting women, men
    and children alike. Many are born with congenital or hereditary
    lymphedema. Others, like our veterans, get the disease as a result of
    physical trauma, bacterial infection, or as result of exposure to burn
    pits. Like seven million other Americans, one can develop lymphedema
    after being treated for cancer. Those with LE face a lifetime of time-
    consuming daily care regimens. These include manual lymph drainage
    massage, wrapping oneself in compression garments and using a pneumatic
    pump to control the swelling. Forever. Compression garments aren't even
    covered by Medicare. We are working to expand access through the
    Lymphedema Treatment Act, and we are hopeful this bill will pass this
    year. But it is clear that this community deserves more options.
        Lymphedema is an ignored disease. A study concluded that physicians
    are currently getting an average of only 15-30 minutes of study on the
    lymphatic system in their entire medical training. This leaves them
    ill-prepared to diagnose the disease. Misdiagnosis leads to improper
    treatment. Those who are diagnosed find it difficult to find certified
    lymphedema therapists. Few medical centers exist that are prepared to
    address lymphatic diseases. Surgeons are experimenting with treatment
    that could alter the course of the disease. However, the necessary
    basic research is not being done to inform their procedures. And
    currently, Medicare and Medicaid do not cover some of the basic
    treatment needs of these patients--such as compression garments, which
    all must wear daily.
                fiscal year 2021 appropriations recommendations
        It is time for a challenge worthy of our great country. We ask that
    within 20 years, we will make lymphedema a truly treatable disease. To
    reach this goal will require a commitment to important medical
    research. LE&RN joins the broader medical research community in
    thanking Congress for continuing to provide the National Institutes of
    Health with proportional and sustainable funding increases over the
    past several fiscal years, and we ask you all to continue to prioritize
    these activities by providing at least a $3 billion funding increase
    for fiscal year 2021 to bring NIH's budget up to $44.7 billion.
        We continue to urge the Subcommittee to work to expand and advance
    the lymphatic disease portfolio at the NIH. In late 2015, the NIH
    hosted a Lymphatic Symposium, where experts in the field identified a
    scientific roadmap that could build the research portfolio up to a
    level of at least $70 million annually over subsequent years by funding
    meritorious grants on critical topics. In an effort to further support
    and enhance emerging lymphedema and lymphatic disease research
    activities, we ask the Subcommittee to encourage further collaboration
    among relevant institutes and centers conducting research in this area.
    We also call on the Subcommittee to work with your colleagues to
    establish a National Commission on Lymphatic Disease Research, which
    can thoroughly examine the portfolio and make recommendations on how
    best to advance this emerging scientific area under NIH's current
    structure. Currently, the National Institutes of Health spends
    approximately $25 million annually on lymphatic research, and only $5
    million of this is dedicated to clinical lymphedema research. Experts
    state with confidence that there is no other disease affecting more
    Americans that receives so little attention. It must also be noted that
    study of the lymphatic system is poised to bring miracles for a host of
    diseases that are part of the lymphatic continuum: obesity, heart
    disease, diabetes, Rheumatoid arthritis, cancer metastasis, AIDS,
    Crohn's disease, lipedema, and a host of other diseases. Recent
    research discovered lymphatics surrounding the brain, which now has us
    studying its impact on Alzheimer's disease and multiple sclerosis. We
    appreciate the Subcommittee's continued support for the establishment
    of a National Commission on Lymphatic Diseases and ask that NIH be held
    accountable for the lack of progress on its establishment.
        LE&RN also joins the public health community in asking Congress to
    provide the Centers for Disease Control and Prevention (CDC) with $8.3
    billion through fiscal year 2021 and to establish funding to increase
    awareness, education, and surveillance of lymphatic diseases. The CDC's
    National Center for Chronic Disease Prevention and Public Health
    Promotion has programs dedicated to improving surveillance, physician
    education, and public awareness for several chronic diseases. We
    encourage the Subcommittee to establish a $5,000,000 merit-based
    programmatic activity in this area that will allow CDC to work with
    stakeholder organizations to expand important initiatives on chronic
    diseases such as lymphedema and lymphatic diseases. Formal study of the
    lymphatic system and of lymphatic diseases is virtually nonexistent in
    the current curricula of U.S. medical schools, and misinformation
    routinely leads to misdiagnosis and under-treatment. This delay and
    misdirection of treatment results in irreparable physical and
    psychosocial harm to patients suffering from these already debilitating
    diseases. CDC can help to address this lack of public and provider
    awareness.
        Thank you for the opportunity to testify before you today. LE&RN
    looks forward to working with you all to advance medical research and
    public health activities that will improve patient outcomes for the
    members of our community suffering from these debilitating diseases.

        [This statement was submitted by William Repicci, President and
    CEO,
    Lymphatic Education & Research Network.]
                                     ______

                      Prepared Statement of March of Dimes

        March of Dimes, the nation's leading nonprofit organization
    fighting for the health of all moms and babies, appreciates this
    opportunity to submit testimony for the record on fiscal year 2021
    appropriations for the Department of Health and Human Services (HHS).
    March of Dimes leads the fight for the health of all mothers and
    infants through our research, community services, education, and
    advocacy. Our organization recommends the aforementioned funding levels
    for programs and initiatives that are essential investments in maternal
    and child health.
        Eunice Kennedy Shriver National Institute of Child Health and Human
    Development (NICHD): March of Dimes recommends that Congress provide at
    least $1.6 billion for NICHD's groundbreaking biomedical research
    activities in fiscal year 2021. Increased funding will allow NICHD to
    sustain vital research on preterm birth, maternal mortality, maternal
    substance use, prenatal substance exposure and related issues through
    extramural grants, Maternal-Fetal Medicine Units, the Neonatal Research
    Network and the intramural research program. It will also ensure that
    NICHD can continue research on the impact of the 2019 novel coronavirus
    and coronavirus disease 2019 (COVID-19) on pregnant women, new mothers,
    and infants. March of Dimes is strongly supportive of NICHD's efforts
    to expand research identifying safe and effective therapies for
    pregnant and lactating women. The Task Force on Research Specific to
    Pregnant and Lactating Women (PRGLAC) laid the foundation for this
    important work by releasing recommendations in September 2018 as
    mandated by Congress in the 21st Century Cures Act (Public Law 114-
    255). March of Dimes is encouraged by PRGLAC's current work to develop
    an implementation plan for those recommendations. NICHD funding also
    supports research to address gaps in our understanding of the best way
    to treat mothers with opioid use disorder and the long-term impact of
    opioid exposure in utero. March of Dimes was pleased the President's
    fiscal year 2021 budget request included $50 million specifically for
    research to improve outcomes for infants born too soon or born with
    dangerous health conditions. We support the inclusion of this dedicated
    funding to address the nation's preterm birth crisis.
        Title V Maternal and Child Health Block Grant Program: March of
    Dimes recommends funding the Title V Maternal and Child Health Block
    Grant Program (Title V Block Grant) at $715 million. States,
    territories and other jurisdictions use Title V Block Grant funds to
    support their most pressing maternal and child health needs. This
    increase in funding can be used to intensify state efforts to prevent
    maternal deaths and severe maternal morbidity, including supporting
    maternal mortality review committees, implementing the Alliance for
    Innovation on Maternal Health program, and continuing State Maternal
    Health Innovation Grants. We urge the Committee to increase funding for
    the Title V Block Grant in fiscal year 2021 to allow states to address
    maternal mortality while maintaining and expanding its work to improve
    maternal and child health across the nation and confronting emerging
    issues, such as COVID-19.
        Safe Motherhood Initiative: The mission of the Safe Motherhood
    Initiative at the CDC's National Center for Chronic Disease Prevention
    and Health Promotion is to promote optimal reproductive and infant
    health. March of Dimes recommends funding of $76 million for the Safe
    Motherhood program, an increase of $18 million over fiscal year 2020.
    The increase would be used to scale CDC's efforts to address the
    nation's alarming number of maternal deaths by supporting state-based
    maternal mortality review committees in all 50 states. March of Dimes
    also strongly urges maintenance of the preterm birth sub-line at $2
    million, as authorized in the PREEMIE Reauthorization Act of 2018
    (Public Law 115-328), to maintain ongoing and essential preterm birth
    research at CDC.
        National Center on Birth Defects and Developmental Disabilities
    (NCBDDD): NCBDDD is the lead Federal agency tasked with supporting
    vital surveillance, research, and prevention activities on birth
    defects and developmental disabilities. For fiscal year 2021, March of
    Dimes urges the Committee to provide at least $168.5 million for NCBDDD
    and apply this increase across the full range of NCBDDD activities.
    This increase aligns with March of Dimes' request to increase funding
    for the CDC by 22 percent by fiscal year 2022. We also urge the
    Committee to continue support for two new NCBDDD activities funded in
    fiscal year 2020, the Surveillance for Emerging Threats to Mothers and
    Babies Initiative and work to improve neonatal abstinence syndrome
    (NAS) surveillance. The Emerging Threats Initiative enables select
    states and jurisdictions to continue important work begun during the
    Zika virus response to identify and address new threats to mothers and
    infants. Currently, NCBDDD is working to utilize this infrastructure to
    monitor the impact of COVID-19 on moms and babies. NCBDDD's efforts to
    improve NAS surveillance are vital to addressing the opioid epidemic's
    short- and long-term impact on infants.
        Newborn Screening: March of Dimes urges funding of $29.7 million
    for CDC's Newborn Screening Quality Assurance Program (NSQAP) and $31
    million for the Health Resources and Services Administration's (HRSA)
    Heritable Disorders program, which play critical roles in assisting
    states in the adoption of additional screenings, educating providers
    and consumers, and ensuring coordinated follow-up care. These amounts
    are equal to the authorized levels in the Newborn Screening Save Lives
    Reauthorization Act of 2019 (H.R. 2507), which unanimously passed the
    U.S. House of Representatives in July 2019. HRSA's Heritable Disorders
    program also supports the work of the Advisory Committee on Heritable
    Disorders in Newborns and Children (ACHDNC), which provides
    recommendations to the HHS Secretary for conditions to be included in
    the Recommended Uniform Screening Panel (RUSP). In recent years, the
    ACHDNC has added four new conditions to the RUSP, bringing the total
    number of recommended screens to 35. New funding for NSQAP and the
    Heritable Disorders program is crucial to ensure states have adequate
    funds and support to implement screening for these new additions to the
    RUSP.
        Grants for Maternal Depression Screening and Treatment: Research
    shows that up to one in seven pregnant women or new mothers experience
    some sort of maternity-related depression, yet only about 15 percent of
    those affected receive treatment. The 21st Century Cures Act sought to
    address this gap by authorizing grants to states to improve screening
    for and treatment of maternal depression in pregnant and postpartum
    women. March of Dimes appreciates that Congress provided funding for
    this innovative grant program in fiscal year 2020 and urges the
    Committee to provide $8 million for the programs in fiscal year 2021.
        Funding to Promote Optimal Birth Spacing and Improved Birth
    Outcomes: Research shows that appropriate birth spacing--waiting at
    least 18 months between pregnancies--can dramatically reduce the risk
    of poor birth outcomes. Additionally, we know that the youngest mothers
    have some of the worst birth outcomes. We can mitigate these risk
    factors by ensuring women have access to evidence-based counseling and
    education prior to pregnancy and access to all forms of contraception
    approved by the Food and Drug Administration. To support these
    important goals, March of Dimes recommends funding of $400 million for
    Title X Family Planning Program and $110 million for the Teen Pregnancy
    Prevention Program administered by the Office of the Assistant
    Secretary for Health.
        Conclusion: March of Dimes looks forward to working with
    appropriators and all Members of Congress to secure the resources
    needed to improve our nation's health. Federal public health programs
    are essential to preventing preterm birth, ending preventable maternal
    deaths, and addressing the opioid epidemic's impact on mother, infants
    and families.

        [This statement was submitted by Ariel Gonzalez, Esq., Senior Vice
    President of Public Policy and Government Affairs, March of Dimes.]
                                     ______

                  Prepared Statement of The Marfan Foundation
     the foundation's fiscal year 2021 l-hhs appropriations recommendations
    _______________________________________________________________________

      --At least $44.7 billion in program level funding for the National
            Institutes of Health (NIH).
        --Proportional funding increase for NIH's National Heart, Lung, and
                Blood Institute (NHLBI); National Institute of Arthritis
                and Musculoskeletal and Skin Diseases (NIAMS); National Eye
                Institute (NEI); and National Center for Advancing
                Translational Sciences (NCATS).
    _______________________________________________________________________

        Chairman Blunt and distinguished members of the Subcommittee, thank
    you for your time and your consideration of the priorities of the
    heritable connective tissue disorder and aortic aneurysm syndrome
    community as you work to craft the fiscal year 2021 L-HHS
    Appropriations Bill.
    About The Marfan Foundation
        The Marfan Foundation's mission is to save lives and improve the
    quality of life of individuals with Marfan syndrome and other genetic
    aortic/vascular conditions.
      --We pursue the most innovative research and make sure that it
            receives proper funding.
      --We create an informed public and educated patient community to
            increase early diagnosis and ensure life-saving treatment.
      --We provide relentless support to families, caregivers, and
            healthcare providers.
        The Foundation will not rest until we've achieved victory--a world
    in which everyone with these conditions receives a proper diagnosis,
    gets the necessary treatment, and lives a long and full life.
    About The VEDS Movement
        The mission of The VEDS Movement is to save lives and improve the
    quality of life of individuals with Vascular Ehlers-Danlos Syndrome
    (VEDS). By pursuing the most innovative research, educating the medical
    community, general public and affected individuals, and providing
    support to patients, families, and caregivers, we can charge forward
    and improve the outcomes for those living with VEDS.
    About Genetic Aortic Aneurysm/Vascular Conditions
        Connective tissue is found throughout the body. Consequently,
    heritable connective tissue conditions, like Marfan syndrome, Vascular
    Ehlers Danlos syndrome (VEDS), Loeys-Dietz syndrome, and familial
    aortic aneurysm syndrome, can affect many different parts of the body.
    Features of the conditions are most often found in the heart, blood
    vessels, bones, joints, lungs, eyes and intestines. All of these
    conditions are genetic conditions that have one common feature: the
    aorta (the main blood vessel that carries blood from the heart to the
    rest of the body) is prone to enlarge or rupture, a life-threatening
    problem that requires appropriate and timely medical intervention. In
    addition, people with Vascular Ehlers Danlos and Loeys-Dietz Syndrome
    are at high risk for ruptured arteries or organs throughout the body.
                   centers for disease control and prevention
        People with heritable connective tissue disorders are born with
    them but features of the conditions are not always present right away.
    Some people have a lot of features at birth or as young children--
    including serious conditions like aortic enlargement. Others have fewer
    features when they are young and don't develop aortic enlargement or
    other signs of Marfan syndrome, vascular Ehlers Danlos, or Loeys-Dietz
    syndrome until they are young adults. Some features of these syndromes,
    like those affecting the heart and blood vessels, bones or joints, get
    worse over time. This makes it very important for people with such
    conditions to receive accurate, early diagnosis and treatment. Without
    it, they can be at risk for potentially life-threatening complications
    that could lead to a sudden early death. The earlier some treatments
    are started, the better the outcomes are likely to be. We are asking
    Congress to provide the Centers for Disease Control and Prevention
    (CDC) with $8.3 billion through fiscal year 2021 and to establish
    funding to increase awareness, education, and surveillance of
    connective tissue disorders. The CDC's National Center for Chronic
    Disease Prevention and Public Health Promotion has programs dedicated
    to improving surveillance, physician education, and public awareness
    for several chronic diseases. We encourage the Subcommittee to
    establish a $5,000,000 merit-based programmatic activity in this area
    that will allow CDC to work with stakeholder organizations to expand
    important initiatives on chronic diseases such as heritable connective
    tissue conditions, like Marfan syndrome, Vascular Ehlers Danlos
    syndrome (VEDS), Loeys-Dietz syndrome, and familial aortic aneurysm
    syndrome.
                         national institutes of health
        NIH, specifically NIAMS and NHLBI, have worked closely with the
    Foundation to investigate the mechanisms of these conditions. In recent
    decades, this research has yielded significant scientific breakthroughs
    that have the potential to improve the lives of affected individuals.
    In order to ensure that the heritable connective tissue disorders
    research portfolios can continue to expand and advance, NIH requires
    meaningful funding increases to invest in emerging and promising
    activities.
                              patient perspective
        David Bowen was 13\1/2\ years old in February 1996 when he suddenly
    suffered a perforation of the sigmoid colon, which required a
    colostomy. His surgeon could not identify a cause and suspected David's
    parents of child abuse, despite David denying anything untoward. A full
    investigation was launched which removed that suspicion. Not one of his
    physicians ever considered the need to consult a geneticist. Instead,
    they led the family to believe that David was healthy and there was no
    reason to worry. While recovering he had other unusual symptoms, which
    should've sparked more investigation, but he was released from the
    hospital in early March. While at home slowly healing, all he wanted
    for his 14th Birthday was to roller blade around his driveway. In June,
    he had surgery to reverse the colostomy. It was filled with
    complications; fever, pain, vomiting, elevated blood pressure, and more
    bowel problems, but the doctors did not think they were serious and
    said it would take time. But David's condition worsened. The doctors
    and nurses were still not alarmed and did not consult a geneticist.
    David continued to go downhill and, by evening he collapsed in his
    mother's arms. His parents quickly arranged for a helicopter transport
    to a major trauma center. By the time he got there, he was in septic
    shock, bleeding, with infection throughout his body. He had surgery in
    the morning--the large colon was wide reopen, four perforations of the
    small bowel, abscesses, and blood clots. There were new complications
    over the next 10 days and, despite a valiant fight, David died on July
    8, 1996.
        For David, the diagnosis came too late to save him. Tragically, in
    2020, this same story still continues to replay over and over due to
    the lack of medical knowledge of VEDS, including in the hospital
    emergency departments. People with VEDS rely on a handful of
    specialists to be available to their local doctors, especially in the
    case of emergency. In fact, 80 percent of people with VEDS have a major
    complication by the age of 40. And, the median life expectancy is 51
    years. Education and awareness is needed. It's truly a matter of life
    and death.

        [This statement was submitted by Michael Weamer, President and CEO,
    The Marfan Foundation.]
                                     ______

                Prepared Statement of Matthew Savage of Virginia
        Dear Chairman Blunt, Ranking Member Murray and distinguished
    members of the Subcommittee:
        I write to you concerning the budget request of the Department of
    Education for fiscal year 2021. I write in opposition to Secretary
    Devos and President Trump's continuous budget cuts and request for
    consolidation of many of the grant programs the Congress has worked to
    build, beginning in 1965.
        In a time of national emergency, when our school districts are
    being asked to cut costs in order to make up for a loss of revenue,
    when teachers are being laid off, and when our lower-income students
    who may not have access to a computer, high-speed Internet, or lunch
    outside of school are most at risk of falling behind in their
    educational careers, many Americans will find it difficult, as I do, to
    accept a tiny handful of billionaires proposing cuts to funding for our
    most vulnerable students.
        We must fully understand the full implications of what Secretary
    Devos is really proposing in regards to the Elementary and Secondary
    Education for the Disadvantaged (ESED) block grant. Secretary Devos
    calls it putting students first; but in reality, this is nothing more
    than a tool for the richest of the rich to consolidate the power and
    the money that the Congress appropriates for the disadvantaged youth.
        The justification for the ESED consolidation of these grant
    programs is that it allows the states and school districts to assert
    more control over the money they receive from the Federal Government.
    But the facts are that this consolidation proposal would not accomplish
    that goal. The facts are that consolidation of formula grants leads to
    more, not less, Federal power; and that power would be possessed by an
    even smaller group of people. This proposal would merely undermine the
    Congressional 'power of the purse' by allowing one individual to decide
    the fate of nearly twenty billion dollars of Federal funds. This
    proposal would allow states and individual school districts to use
    Federal money however they wish, without any substantive Federal
    regulation or Federal oversight.
        Each of the almost 30 grant programs Secretary Devos proposes
    consolidating serve a different purpose. The largest is the Title 1
    grant program to support schools with a large number of low-income
    residents, but they vary from support for migrant education, the
    homeless, the rural school population, English learners and neglected
    and delinquent children; and those are the students who are going to be
    impacted the worst if this ESED consolidation proposal is adopted. All
    of these grant programs serve a different purpose, and thus each must
    be apportioned with a different formula and governed by different
    Federal regulations and reporting requirements. Contrary to what
    Secretary Devos may believe, there is no one size fits all formula. As
    with the needs of every student, the needs of each individual school
    are completely different. And now as ever, we need the Department of
    Education's budget to recognize the unique needs of each classroom.
        I am deeply concerned, further, that the ESED consolidation program
    would allow states to divert more and more into charter schools while
    the educational needs of the vast majority of students go unmet.

        With warm regards.

                                     ______

                     Prepared Statement of Mayo Linda  deg.
                        Prepared Statement of Linda Mayo
        Schizophrenia and bipolar disorder are among the most serious
    psychiatric disorders and play a disproportionate role among
    individuals who end up homeless, incarcerated, and who commit suicide.
    The cost of schizophrenia alone in the U.S. was estimated to be $155.7
    billion \1\.
    ---------------------------------------------------------------------------
        \1\ Cloutier M, Aigbogun MS, Guerin A, et al. The economic burden
    of schizophrenia in the United States in 2013. J Clin Psychiatry.
    2016;77:764-771.
    ---------------------------------------------------------------------------
        As the mother of adult twin daughters, this issue is very personal.
    Both girls have been living with schizophrenia and bipolar schizo-
    affective disorders since their early twenties. Initially diagnosed and
    treated they lived independent and productive lives for over 10 years;
    working, going to college, socializing, dating, etc.
        Over that time period they were in wellness treatment programs and
    taking meds. But a couple of times, their bodies developed a tolerance
    for the medication and they had to go through med changes to stabilize
    them once again. We are fortunate that substance abuse has never been
    an issue to deal with in their treatment. But there are those who
    choose to self-medicate with illegal drugs in order to drum out the
    voices in their heads.
        Ten years ago, still in treatment and taking their medication, they
    began to spiral down. In today's mental health system the intervention
    they needed to prevent total decompensation is not permitted. They both
    decompensated to the point they were completely psychotic and one of
    them became homeless. Examples of their condition? One went to a house
    in which we had once lived in 20 years ago, pounded on the door
    screaming obscenities telling these people to get out of her ``Fn**''
    house. The other believed she had transmitters under her skin and
    thought electricity was going through her body to the point she was
    pulling out electrical outlets and cutting electrical cords. I could
    cite many, many more similar and worse examples but I will move on.
        Both eventually got into intensive treatment programs through the
    criminal justice system. One currently lives in a board and care
    facility and receives intensive treatment services and medication. The
    other lives in a subsidized apartment and receives intensive treatment
    services and medication. The kicker here is, even while being treated
    and medicated, they continue to battle the symptoms of their illness
    each and every day. My one daughter is now on Clozaril.
        Today, Clozaril is the final medication that can keep her from
    falling into the abyss of total insanity. There are no other anti-
    psychotic medications for her to try. As a mother, I am terrified of
    the time when her body no longer responds to the medication.
        I am begging you to do everything you can to support extensive
    research into more and better treatment options and a cure for my
    daughters and all those who share a similar story. I am not alone in
    this battle. PLEASE HELP US! Since 2006 Congress has been very generous
    by increasing NIMH budget by 35 percent, while at the same time, NIMH
    has reduced its support for drug treatment trials/research for cures by
    96 percent.
        I hope I have helped you understand the gravity of the situation
    for many who live with a serious mental illness. We are desperate for
    new medications. We are desperate for a cure. Please direct the NIMH to
    use the resources to save our loved ones lives and give them a chance
    to again live safe, productive, and happy lives.
        Thanks for giving me the opportunity to express my fears and hope
    for resources to advance the research for our most vulnerable in our
    society today.

                                     ______

                  Prepared Statement of McClellan Amy J.  deg.
                     Prepared Statement of Amy J. McClellan
        I am the mother of two young adult daughters who live with serious
    mental illnesses--bipolar disorder and major depressive disorder (that
    has not responded to current treatments). Their lives were turned
    upside down with the onset of their mental illness in adolescence and
    profoundly affected our entire family. I still lay awake many nights
    praying that my daughter with treatment-resistant depression makes it
    through another day.
        I also co-founded and am the board president of a mental health
    Clubhouse in Miami, which serves very low-income adults living with
    serious mental illness. Many of our members have told me their stories
    of homelessness, desperation and difficulty finding good treatment.
        The National Institute of Mental Health (NIMH) is the main Federal
    Government agency for research into mental illness. The NIMH was
    authorized through the passage of the National Mental Health Act in
    1946 to better help individuals with mental health disorders through
    better diagnosis and treatments. With a budget of almost $2 billion in
    2020, the NIMH conducts research and funds outside investigators to
    better understand mental illness and develop new treatments to reduce
    the burden these disorders have on individuals.
        I beg you to have NIMH prioritize research for the 5 percent of our
    population that has serious mental illnesses that include chronic
    depression (the leading cause of disability in the U.S.), schizophrenia
    (and schizoaffective disorder), and bipolar illness. This makes sense
    because it's the humane thing to do, but it also makes good fiscal
    smarts. The most severe mental illnesses account for the most dollars
    spent in hospitals, jails, prisons, emergency rooms, and services for
    the homeless. There hasn't been a new treatment for schizophrenia for
    decades, yet this illness alone destroys millions of lives each year
    and fills our streets and jails with people with untreated mental
    illness.
        Dr. E. Fuller Torrey wrote in Psychiatric Times earlier this month:

        ``Congress awarded the National Institute of Mental Health an
            additional $98 million as part of the National Institutes of
            Health budget resolution in December 2019, which brings the
            NIMH budget to just under $2 billion and represents a 35
            percent increase since 2015, one of the largest increases in
            the history of the NIMH. Yet, during the 5 years from 2015
            through 2019, NIMH funded a total of TWO new drug treatment
            trials for schizophrenia and bipolar disorder, according to
            clinicaltrials.gov. This contrasts with the 5-year period from
            2006 through 2010 when NIMH funded 48 such trials . . .''
        In December 2019, the NIMH released a draft of their five-year
    strategic plan for public comment. They reported receiving more than
    6,000 responses identifying examples of research initiatives the NIMH
    could be pursuing today to help people with serious mental illness
    recover and live better lives. Despite this robust response, NIMH made
    no substantive changes to the research goals or objectives in the final
    version released to the public earlier this week.
        The NIMH research goals for 2020-2025 heighten the existing
    imbalance in NIMH research. In doing so, they offer little hope for new
    or better treatments for individuals who are currently afflicted with a
    mental illness during their lifetime, especially a serious mental
    illness. This failure is inexcusable given the large increase in
    research funding given to NIMH in recent years.
        Future NIMH funding must be used to correct the existing imbalance,
    not worsen it, especially now that the COVID-19 pandemic has upended
    the mental health treatment system and will likely result in an
    exacerbation of symptoms in people currently affected and an increase
    in serious mental illnesses among Americans. Those with the most severe
    forms of mental illness deserve to be prioritized.

        Sincerely.
                                     ______

                 Prepared Statement of Meals on Wheels America
        Dear Chairman Blunt, Ranking Member Murray, and Members of the
    Subcommittee:
        Thank you for the opportunity to submit testimony concerning fiscal
    year 2021 appropriations for the Older Americans Act (OAA) Nutrition
    Program, administered by the Department of Health and Human Services'
    (HHS) Administration for Community Living (ACL). On behalf of Meals on
    Wheels America, the national network of community-based senior
    nutrition providers and the individuals they serve, we are grateful for
    your enduring support for the program, particularly in response to the
    coronavirus (COVID-19) crisis in recent months. Despite crucial
    investments in annual appropriations and emergency supplemental
    funding, senior nutrition programs across the country face great
    challenges, existing prior to COVID-19, in addressing the growing
    demand for services with insufficient resources. Since the onset of the
    current national emergency, local Meals on Wheels programs have been
    responding on the front lines to deliver essential nutrition assistance
    to older Americans in need and are experiencing a dramatic increase in
    requests for meals, soaring costs and other unfamiliar challenges as
    they adjust their operations amid the pandemic. For this reason, we
    request a total of $1,028,753,000 for the OAA Nutrition Program--
    Congregate Nutrition Services, Home-Delivered Nutrition Services, and
    Nutrition Services Incentive Program (NSIP)--in fiscal year 2021. As
    older adults will most likely need to continue to stay at home and
    practice social distancing through the new fiscal year, our specific
    appropriations requests are:
      --$510,342,000 for Congregate Nutrition Services (Title III C-1)
      --$336,342,000 for Home-Delivered Nutrition Services (Title III C-2)
      --$182,069,000 for Nutrition Services Incentive Program (Title III)
        This fiscal year 2021 ask represents a $70,000,000 increase for
    Home-Delivered Nutrition Services and a $22,000,000 increase for
    Nutrition Services Incentive Program, both of which are necessary to
    meet the growing need for vital nutrition assistance and social
    connection to seniors, who remain among those at greatest risk of
    contracting and experiencing complications due to COVID-19. In total,
    this is a $92 million (10 percent) increase above fiscal year 2020-
    enacted funding levels and reflective of the total amount authorized
    for the OAA Nutrition Program in fiscal year 2021 by the Supporting
    Older Americans Act of 2020 (Public Law 116-131)--bipartisan
    legislation to reauthorize the OAA and its programs through fiscal year
    2024. As our country strives to respond, recover and rebuild from this
    health and economic crisis, these nutrition programs and the services
    they provide must be continue to exist and expand because they are a
    lifeline for millions of our nation's most vulnerable.
        The OAA Nutrition Program (i.e., Meals on Wheels) provides
    nutritious meals, opportunities for socialization and safety checks to
    adults age 60 and older--either in a group setting or directly in the
    home--and has been at the forefront of addressing senior hunger and
    isolation for nearly fifty years. Overseen by ACL's Administration on
    Aging (AoA) and implemented at the local level through more than 5,000
    community-based providers, the services offered through the program are
    effective in promoting the health, independence and quality of life of
    seniors.
        However, despite broad support from the public, policymakers and
    seniors themselves, the OAA Nutrition Program remains underfunded year
    after year and has experienced diminished growth and reach during a
    time when the country's older adult population is expanding. Due to
    COVID-19, older adults are now also facing an unprecedented threat to
    their health, autonomy and financial well-being. In a recent survey,
    four out of five Meals on Wheels programs reported demand for services
    had at least doubled since March 1, 2020.\1\ Accordingly, additional
    Federal funding and flexibilities for utilizing OAA dollars are needed
    for senior nutrition providers to adequately adapt and scale operations
    to meet the rapidly growing and evolving needs of the communities they
    serve.
    ---------------------------------------------------------------------------
        \1\ Meals on Wheels America. Survey of Meals on Wheels America
    Membership conducted by Trailblazer Research between April 22-28, 2020,
    https://www.mealsonwheelsamerica.org/learn-more/national/press-room/
    news/2020/05/07/new-survey-data-demand-on-meals-on-wheels-national-
    network-swells-and-wait-lists-grow-due-to-covid-19-pandemic.
    ---------------------------------------------------------------------------
       insufficient federal funding threatens a growing number of seniors
        With approximately 12,000 individuals turning 60 every day, the
    senior population is becoming increasingly endangered by hunger and
    isolation. Nationally, 9.5 million seniors are threatened by hunger
    (i.e., marginally food insecure)--and one in 13 individuals (7.7
    percent) age 60 and older are food insecure or very low food secure.\2\
    Social isolation--which has been amplified throughout the current
    pandemic amid safety and social distancing measures--is another threat
    for the nearly 17.5 million (24 percent) seniors living alone, with one
    in five older adults reporting frequent feelings of loneliness prior to
    COVID-19.\3,4\ Most older Americans possess at least one trait that
    puts them at increased risk of experiencing food insecurity,
    malnutrition, social isolation and/or loneliness, thereby increasing
    the likelihood of experiencing myriad negative and consequential health
    effects. Despite the wide recognition of the relationship between
    healthy aging and access to nutritious food and regular socialization,
    millions of seniors struggle to meet these basic human needs.
    ---------------------------------------------------------------------------
        \2\ Ziliak & Gunderson. The State of Senior Hunger in America 2017,
    a report prepared for Feeding America, 2019, https://
    www.feedingamerica.org/sites/default/files/2019-05/state-of-senior-
    hunger-2017_full-report.pdf.
        \3\ U.S. Census Bureau, American Community Survey (ACS) Demographic
    Data, 2018, available on the Administration for Community Living's
    (ACL) Aging, Independence, and Disability Program Data Portal (AGID),
    https://agid.acl.gov/.
        \4\ Hawkley, Kozloski & Wong. A Profile of Social Connectedness in
    Older Adults, report prepared for AARP Foundation by Academic Research
    Centers, NORC at the University of Chicago, 2017, https://
    connect2affect.org/wp-content/uploads/2017/03/A-Profile-of-Social-
    Connectedness.pdf.
    ---------------------------------------------------------------------------
        While the OAA Nutrition Program plays a pivotal role in addressing
    the growing issues of senior hunger and isolation, Federal funding for
    the program has not kept pace with demographic shifts or inflation,
    leaving a huge gap between seniors served and those who are in need of
    services but are not receiving them. Nationally, the OAA Nutrition
    Program network served 20 million fewer meals in 2018 than in 2005--a
    decline of more than 8 percent--despite the 60 and older population
    increasing over 45 percent in that same period.\5\ Further underscoring
    the need for more funding, a 2015 Government Accountability Office
    study estimated that 83 percent of low-income, food insecure seniors do
    not receive the congregate or home-delivered meals that they likely
    need.\6\
    ---------------------------------------------------------------------------
        \5\ ACL, Administration on Aging (AoA). State Program Report (SPR)
    2005-2018, available on AGID, https://agid.acl.gov/.
        \6\ U.S. Government Accountability Office (GAO), Older Americans
    Act: Updated Information on Unmet Need for Services, June 2015, https:/
    /www.gao.gov/products/GAO-15-601R.
    ---------------------------------------------------------------------------
        Prior to the COVID-19 pandemic, nearly half of all Meals on Wheels
    America members representing every state and the District of Columbia
    reported maintaining an active waiting list due to insufficient
    resources to meet the need for services in their communities.\7\ That
    sobering reality is even worse now, as revealed in a recent survey
    commissioned by Meals on Wheels America and conducted by Trailblazer
    Research, with over half of Meals on Wheels programs surveyed reporting
    that their existing waiting lists have grown by 26 percent, with 22
    percent of them stating that their waiting lists have at least doubled.
    Furthermore, the survey results indicated that new requests for Meals
    on Wheels services have increased for nearly all programs, and as a
    result programs are serving 56 percent more meals and 22 percent more
    seniors each week since March 1 when concerns of COVID-19 and efforts
    to employ social distancing began.\1\ The emergency funding provided in
    the Families First Coronavirus Response Act (FFCRA) and the Coronavirus
    Aid, Relief and Economic Security (CARES) Act provided a critical boost
    in resources to assist OAA nutrition programs in response to the need
    and demand for additional meals from both pre-existing and new clients
    as a result of the pandemic. While this emergency action was necessary,
    additional appropriations will be needed this coming fiscal year for
    the senior nutrition network, as well. As the country continues to
    combat the severe upsurge in food insecurity during this time of
    economic hardship, there are likely far more seniors that are currently
    in need of, but still not receiving, these critical nutrition and
    social services.
    ---------------------------------------------------------------------------
        \7\ Meals on Wheels America. The More Than a Meal Comprehensive
    Network Study, produced by Meals on Wheels America and conducted by
    Trailblazer Research (public report in publication), 2019.
    ---------------------------------------------------------------------------
            serving those with the greatest social and economic need
        The OAA exists to support seniors in the greatest social and
    economic need, and as such, effectively targets services and stretches
    limited financial resources accordingly. In 2018, the latest year for
    which data is available, the OAA Nutrition Program provided over 73
    million congregate meals and 147 million home-delivered meals to 2.4
    million seniors.\5\ While impressive, it is still leaving too many in
    need behind. Further, for many program participants, the volunteer or
    staff member who delivers meals to their homes or serves them when it's
    safe for congregate dining facilities to be open, may be the only
    individual(s) she or he sees that day, and the meal may account for the
    majority of her or his daily food intake.
        The profile of home-delivered meal clients reveals the high degree
    of vulnerability among recipients, with the majority being age 75 or
    older, female, living alone and/or having three or more chronic
    conditions. Among participants: 35 percent live at or below the poverty
    level; 25 percent live in rural areas; 15 percent are veterans; and 28
    percent are a racial and/or ethnic minority.\8\ Fortunately, the vital
    services financed by the OAA Nutrition Program enable seniors with
    these risk factors to remain safer, healthier and less isolated in
    their own homes and communities.
    ---------------------------------------------------------------------------
        \8\ Mabli et al. Evaluation of the Effect of the Older Americans
    Act Title III-C Nutrition Services Program on Participants' Food
    Security, Socialization, and Diet Quality, Mathematica Policy Research
    report prepared for ACL, April 2017, https://acl.gov/sites/default/
    files/programs/2017-07/AoA_outcomesevaluation_final.pdf.
    ---------------------------------------------------------------------------
        The results of a 2015 study commissioned by Meals on Wheels America
    found that seniors who received daily home-delivered meals were more
    likely to report improvements in mental health, self-rated health and
    feelings of isolation and loneliness, as well as reduced rates of falls
    and decreased concerns about their ability to remain in their home.\9\
    Additional studies have found home-delivered meal program participants
    to experience less healthcare utilization and lower expenditures than
    the non-participant controls, suggesting the program's potential to
    reduce costs among patients with high-cost or complex healthcare needs
    and help them remain independent in their communities.\10\ As public
    spending on healthcare rises each year--largely attributable to a
    rapidly growing senior population with complex health needs (which can
    only be expected to increase amid the ongoing COVID-19 crisis), it is
    imperative that we invest in these cost-effective programs that promote
    health and independence, and reduce costly healthcare utilization.
    ---------------------------------------------------------------------------
        \9\ Thomas & Dosa. More Than a Meal Pilot Research Study, report
    commissioned by Meals on Wheels America, 2015, https://
    www.mealsonwheelsamerica.org/docs/default-source/News-Assets/mtam-full-
    report_march-2-2015.pdf?sfvrsn=6.
        \10\ Berkowitz et al. Meal Delivery Programs Reduce the Use of
    Costly Health Care in Dually Eligible Medicare and Medicaid
    Beneficiaries. Health Affairs (Vol. 37(4): 535-542; 2018), https://
    www.healthaffairs.org/doi/10.1377/hlthaff.2017.0999.
    ---------------------------------------------------------------------------
        As a long-established and trusted community-based service, Meals on
    Wheels is also a successful public-private partnership that, for
    decades, has leveraged Federal OAA grants to offer nutrition and social
    services with the help of millions of volunteers, who provide
    innumerable in-kind contributions to support daily operations. Through
    the delivery of these services, the program produces concrete results
    and saves significant taxpayer dollars by reducing other costly
    healthcare expenditures and providing a far more cost-effective and
    desirable alternative to traditional long-term care options, often paid
    for by Medicare and Medicaid.
            delivering a strong return on investment for our nation
        We understand the difficult decisions you face with respect to
    annual appropriations bills, efforts to mitigate the immediate impact
    of the global pandemic and recovery from this prolonged national
    emergency. Providing a $92 million (10 percent) increase for the OAA
    Nutrition Program is a proven and efficient use of taxpayer dollars and
    critically needed at this time to ensure adequate resources are
    available to meet the nutritional and social needs of our nation's most
    frail seniors.
        As the Subcommittee develops its fiscal year 2021 Labor-HHS-
    Education appropriation bill, we request you provide $1,028,753,000 for
    the OAA Nutrition Program so that local community-based Meals on Wheels
    programs can continue serving and safeguarding a growing number of
    seniors in need. As mentioned earlier, this funding level reflects the
    total provided by the Supporting Older Americans Act of 2020, which
    reauthorizes the OAA for 5 years and was signed into law in March 2020
    after being passed unanimously, and is further evidence of the broad
    and bipartisan backing for this robust funding in Congress. Thank you,
    again, for your leadership, support and consideration. We are pleased
    to offer our assistance to you and your staff at any time throughout
    the appropriations process.

        [This statement was submitted by Ellie Hollander, President and
    CEO, Meals on Wheels America.]
                                     ______

     Prepared Statement of the Medical Library Association and Association
                     of Academic Health Sciences Libraries
        I, Mary M. Langman, Director, Information Issues and Policy,
    Medical Library Association (MLA), submit this statement on behalf of
    MLA and the Association of Academic Health Sciences Libraries (AAHSL).
    MLA is a global, nonprofit, educational organization with a membership
    of more than 400 institutions and 3,000 professionals in the health
    information field. AAHSL supports academic health sciences libraries
    and directors in advancing the patient care, research, education and
    community service missions of academic health centers through visionary
    executive leadership and expertise in health information, scholarly
    communication, and knowledge management.
        We thank the Subcommittee for the opportunity to submit testimony
    supporting appropriations for the National Library of Medicine (NLM),
    an agency of the National Institutes of Health (NIH), and recommend
    $479.7 million for NLM in fiscal year 2021, a 5 percent ($22.7 million)
    increase.
        Working in partnership with the NIH and other Federal agencies, NLM
    is the key link in the chain that translates biomedical research into
    practice, making the data and other results of research readily
    available to all who need it. NLM is taking on additional
    responsibilities for NIH-wide efforts in data science and open science.
    As health sciences librarians who use NLM's programs and services every
    day, we can attest that NLM resources literally save lives. Therefore,
    investing in NLM is an investment in good health. NLM addresses
    Congressional priorities through rapid deployment of resources related
    to health emergencies including response to the COVID-19 pandemic and
    the opioid crisis, by providing clinical trial information, genomic
    sequencing data, and public access to research literature.
    Leveraging NIH Investments in Biomedical Research
        NLM's budget supports information services, research, and programs
    that sustain the nation's biomedical research enterprise. In fiscal
    year 2020 and beyond, NLM's budget must continue to be augmented to
    support modernization and expansion of its information resources,
    services, research, and programs which collect, organize, and develop
    new ways to make readily accessible rapidly expanding biomedical
    knowledge resources and data. NLM maximizes the return on investment in
    research conducted by the NIH and other organizations. It makes the
    results of biomedical information accessible to researchers,
    clinicians, business innovators, students, and the public, enabling
    such data and information to be used more efficiently and effectively
    to drive innovation and improve health. Rapid growth of data also
    necessitates funding that will ensure long-term sustainability of these
    valuable information resources.
        NLM plays a critical role in NIH's data science and open science
    initiatives. NLM leads the development, maintenance and dissemination
    of key standards for health data interchange that are now required of
    certified electronic health records (EHRs). NLM builds, sustains, and
    augments a suite of almost 300 databases which provide information
    access to health professionals, researchers, educators, and the public.
    It supports the acquisition, organization, preservation, and
    dissemination of the world's biomedical literature. In fiscal year
    2019, NLM made genomic sequence data available in the cloud. NLM's
    Sequence Read Archive (SRA) is the world's largest publicly available
    repository of next-generation genome sequence data, with more than 9
    million records comprising 25 petabytes of data. To improve access and
    utility of SRA data, NLM uploaded the public access SRA data to two
    commercial clouds that have agreements with NIH's Science and
    Technology Research Infrastructure for Discovery, Experimentation, and
    Sustainability (STRIDES) Initiative. This transition significantly
    expands the discovery potential of the data. Freed from the limitations
    of local storage and computational resources, users are empowered to
    compute across the full corpus of SRA data without having to download
    and store large volumes of data. Moving to cloud platforms also makes
    it possible to develop customized tools and methods for asking research
    questions of the data.
    Growing Demand for NLM's Information Services
        Each day, more than 6 million people use NLM websites and download
    115 terabytes of data. Thousands of researchers and businesses submit
    15 terabytes of data daily. Annually, NLM information systems process
    more than six billion human requests and eight billion computer-to-
    computer interactions. NLM's information services help researchers
    advance scientific discovery and accelerate its translation into new
    therapies; provide health practitioners with information that improves
    medical care and lowers its costs; and give the public access to
    resources and tools that promote wellness and disease prevention. Every
    day, medical librarians across the nation use NLM's services to assist
    clinicians, students, researchers, and the public in accessing
    information to save lives and improve health. Without NLM, our nation's
    medical libraries would be unable to provide quality information
    services that our nation's health professionals, educators, researchers
    and patients increasingly need.
        NLM's data repositories and online integrated services such as
    GenBank, dbGaP, Genetics Home Reference (GHR), PubMed, and PubMed
    Central (PMC) are revolutionizing medicine and ushering in an era of
    personalized medicine. GenBank is the definitive source of gene
    sequence information. Each month, 2.1 million users accessed consumer-
    level information about genetics from GHR, which contains more than
    2,700 summaries of genetic conditions, genes, gene families, and
    chromosomes. PubMed, with more than 30 million references to the
    biomedical literature, is the world's most heavily used source of
    bibliographic information with almost 1.35 million new citations added
    in fiscal year 2019 and approximately 2.5 million users each day. NLM
    also launched a new PubMed platform for an improved user experience,
    including a new search algorithm with relevance rankings and better
    tools for citations. PubMed Central is NLM's digital archive which
    provides public access to the full-text versions of more than 6.1
    million biomedical journal articles, including those produced by NIH-
    funded researchers. On a typical weekday more than 2.5 million users
    download more than 2.8 million articles.
        NLM continually expands biomedical information services to
    accommodate a growing volume of relevant data and information and
    enhances these services to support research and discovery. NLM ensures
    the availability of this information for future generations, making
    books, journals, technical reports, manuscripts, microfilms,
    photographs and images accessible to all Americans, irrespective of
    geography or ability to pay, and guaranteeing that citizens can make
    the best, most informed decisions about their healthcare.
    Improving Public Access to federally Funded Research Results
        The Department of Health and Human Services (DHHS) continues to
    work with NLM to ensure free public access to the results of taxpayer-
    funded research. HHS operating divisions, and ten other Federal
    agencies, use NLM's PubMed Central (PMC) as a common repository to
    provide access to peer-reviewed publications resulting from their
    research. In fiscal year 2019, NLM added 600,000 full-text articles to
    PMC and continued linking articles to associated data by aggregating
    data citations, data availability statements, and supplementary
    materials. Since featuring these data links more prominently, daily
    downloads of supplementary material have increased by 30 percent. A
    subset of about 3 million articles in PMC is available for bulk
    retrieval for text mining and other research purposes.
    Disseminating Clinical Trial Information
        ClinicalTrials.gov, the world's largest clinical trials registry,
    now includes more than 320,000 registered studies and summary results
    for more than 39,000 trials. As health sciences librarians who fulfill
    requests for information from clinicians, scientists, and patients, we
    applaud NIH and NLM for implementing requirements for clinical trials
    registration and results submission consistent with the FDA Amendments
    Act of 2007, and for applying them to all NIH-supported clinical
    trials. These efforts increase transparency of clinical trial results
    and provide patients and clinicians with information to guide
    healthcare decisions. They also ensure biomedical researchers have
    access to results that can inform future protocols and discoveries.
    Partnerships Ensuring Outreach and Engagement in Communities Across the
            Nation
        NLM's outreach programs are essential to the MLA and AAHSL
    membership and to the profession. Through the National Network of
    Libraries of Medicine (NNLM), with over 7,000 members nationwide as of
    fiscal year 2019, NLM educates medical librarians, health
    professionals, and the general public about its services and provides
    training in their effective use. The NNLM serves the public by
    promoting educational outreach for public libraries, secondary schools,
    senior centers and other consumer settings, and its outreach to
    underserved populations helps reduce health disparities. NLM's
    ``Partners in Information Access'' provides local public health
    officials with online information that protects public health.
        Since May 2018, the NNLM has partnered with the NIH All of Us
    Research Program to support community engagement efforts by United
    States public libraries and to raise awareness about the program. To
    date, 376 libraries and 101 community-based organizations across 33
    states and the District of Columbia have held 1,135 events with more
    than 40,000 people. Via the NNLM All of Us Community Engagement
    Network, 654 libraries support health literacy, including offering
    health and wellness programming in their communities. To support public
    library staff in providing health programming to the community, NNLM
    has also provided 491 classes, training, and workshops that have served
    11,188 library staff.
        NLM's MedlinePlus provides consumers with trusted, reliable health
    information on 1,000 topics in English and Spanish. It attracts more
    than 1 million visitors daily. NLM continues to enhance MedlinePlus and
    disseminate authoritative information via the website, a web service,
    and social media. MedlinePlus and MedlinePlus en Espanol have been
    optimized for easier use on mobile phones and tablets. NIH MedlinePlus
    Magazine and NIH MedlinePlus Salud are available in doctors' offices
    nationwide, and NLM's MedlinePlus Connect enables clinical care
    organizations to link from their EHR systems to relevant patient
    education materials.
    Strengthening Data Science and Open Science Capacity
        NLM is a leader in data science and open science, including the
    acquisition and analysis of data for discovery and the training of
    biomedical data scientists. The library aims to strengthen its position
    as a center of excellence for health data analytics and discovery, and
    to spearhead the application of advanced data science tools to
    biological, clinical and health data. NLM is building a workforce for
    data-driven research and health by funding PhD-level research training
    in biomedical informatics and data science. The library also partners
    with NIH to ensure inclusion of data science and open science core
    skills in all NIH training programs, and is expanding training for
    librarians, information science professionals, and other research
    facilitators. NLM is participating in NIH-wide efforts to foster a
    culture that advances science and ensures the development and retention
    of a diverse, safe, and respectful workforce for data-driven research
    and health well into the future.
    Responding to the Novel Coronavirus (COVID-19)
        The health sciences library community thanks Congress for providing
    NLM with the $10 million supplemental appropriations to prevent,
    prepare for, and respond to the Coronavirus. NLM has been responding to
    COVID-19's rapidly evolving situation through its suite of tools and
    deep well of expertise in managing large and complex datasets and
    making them accessible to the public. Our frontline healthcare
    providers use NLM's databases to access the latest research datasets,
    literature publications, and scientific information about COVID-19. For
    example, NLM is:
      --Making immediately available to the public in PubMed Central tens
            of thousands of coronavirus-related research publication and
            data contributed by major publishers
      --Contributing to the COVID-19 Open Research Dataset (CORD-19), which
            represents the most extensive machine-readable coronavirus
            literature collection available for text mining to date, with
            more than 30,000 full-text scholarly articles from PMC as of
            mid-May 2020. The Text REtrieval Conference (TREC)-COVID
            Challenge makes use of the CORD-19 dataset to help search
            engine developers evaluate and optimize their systems in
            meeting the needs of the research and healthcare communities.
      --Providing the biomedical community free and easy access to genome
            sequences from the coronavirus through the GenBank sequence
            database.
      --Providing information about US clinical trials related to COVID-19
            via ClinicalTrials.gov, which is also now making available
            information about trials listed in the World Health
            Organization's international clinical trial registry.
      --Extending standard terminologies to include terms related to COVID-
            19, including codes for laboratory tests, chemical entities,
            and indexing terms.
      --Applying machine learning techniques to research conducted at NLM
            to assist in identifying COVID-19 in X-rays and to identify and
            categorize relevant published literature.
    Supporting Biomedical Informatics Research and Health Information
            Technology Innovation
        NLM conducts and supports informatics research, training and the
    application of advanced computing and informatics to biomedical
    research and healthcare delivery. NLM's National Center for
    Biotechnology Information (NCBI) focuses on genomics and biological
    data banks, and the Lister Hill National Center for Biomedical
    Communications (LHC), is a leader in clinical information analytics and
    standards. Many of today's biomedical informatics leaders are graduates
    of NLM-funded informatics research programs at universities nationwide.
    A number of the country's exemplary electronic and personal health
    record systems benefit from findings developed with NLM grant support.
    A leader in supporting the development, maintenance, and free,
    nationwide dissemination of standard clinical terminologies, NLM
    partners with the Office of the National Coordinator for Health
    Information Technology to support the interoperability of EHRs. NLM
    also develops tools to make it easier for EHR developers and users to
    implement accepted health data standards and link to relevant patient
    education materials. In fiscal year 2019, NLM played a critical role in
    the development, usage, and utility of a data exchange standard to
    improve flow and availability of data, the Health Level Seven
    International (HL7) Fast Healthcare Interoperability Resources
    (FHIR(r)). NIH is encouraging funded investigators to use the FHIR
    standard to capture, integrate, and exchange clinical data for research
    purposes and to enhance capabilities to share research data. NIH has
    also announced to the small business communities its special interest
    in supporting applications that use FHIR in the development of health
    IT products and services. To support these efforts, NLM is managing the
    development and testing of FHIR tools that researchers can use to
    increase the availability of high-quality, standardized research
    datasets and phenotypic information for genomic research and genomic
    medicine.
        We look forward to continuing this dialogue and thank you for your
    efforts to support funding of at least $479.7 million for NLM in fiscal
    year 2021, with additional increases in future years.
                                     ______

              Prepared Statement of the Mental Illness Policy Org.
        I am writing on behalf of our nationwide membership to urge you to
    focus NIMH on serious mental illnesses. We urge the committee to
    require NIMH to allocate a minimum of 33 percent of it's budget to
    finding better medications for schizophrenia, bipolar disorder and
    other serious mental illnesses and specifically to supporting treatment
    trials for those disorders.
        The lack of cures and treatments--as a result of the lack of
    attention from NIMH--is causing the seriously mentally ill to suffer,
    communities to deteriorate, and is bloating costs for everyone.
        As I documented in Insane Consequences: How the Mental Health
    Industry Fails the Mentally Ill, in spite of $140 billion in Federal
    spending, 392,000 seriously mentally ill are incarcerated, 755,000 are
    on probation or parole, 40,000 seriously mentally ill go homeless,
    downtowns are being turned into homeless camps, psychiatric hospitals
    are closing, law enforcement is becoming a more dangerous profession,
    and even educated and wealthy families can't get care for seriously
    mentally ill loved ones.
        This is largely because non-profit mental health organizations and
    Federal mental health programs no longer focus on the seriously ill.
    Mission-creep runs rampant. They wrap worthy social services such as
    bad grades, divorce, angst about gender identity, unemployment, and
    most recently, totally appropriate anxiety about COVID-19 in mental
    health narrative and divert funds to them. The seriously ill are left
    to suffer.
        No agency is a better example of this than NIMH. The NIMH research
    portfolio is a hodge-podge of basic research without any attempt to
    prioritize the research that is most likely to lead to a cure or
    treatment for serious mental illness. Circa 1980, my own mentally ill
    family member was in a NIMH-sponsored inpatient research program at the
    St. Elizabeth's Hospital. Those types of programs no longer exist. If
    they were brought back we might be able to find a treatment or cure
    that would avoid future tragedies like those that befell President
    Ronald Reagan, Rep. Gabrielle Giffords, Rep. Steve Scalise, two capital
    guards, multiple contractors at the Washington Navy Yard and many
    others who were injured by persons with serious mental illness who
    didn't believe existing treatments were worth using.
        Please require NIMH to replace its mission-creep with mission
    control and prioritize research on treatments, cures and medication
    trials for serious mental illness. Thank you for all you do. Let me
    know how I can help or if you need more information.
        Sincerely.

        [This statement was submitted by DJ Jaffe, Executive Director,
    Mental Illness Policy Org.]
                                     ______

                        Prepared Statement of METAvivor
                fiscal year 2021 appropriations recommendations
    _______________________________________________________________________

      --Please provide the National Institutes of Health (NIH) with an
            increase of at least a $3 billion for fiscal year 2021 to bring
            total agency funding up to a minimum of $44.7 billion annually.
      --Please continue to support additional investment for the cancer
            ``moonshot'' as outlined by the 21st Century Cures Act and
            otherwise ensure the National Cancer Institute (NCI) has
            adequate resources.
      --Please continue to emphasize the importance of Federal research
            activities focused on controlling and eliminating cancer that
            has already disseminated (Metastatic Cancer) through committee
            recommendations and timely oversight of ongoing activities.
      --Please support emerging efforts to modernize the Surveillance,
            Epidemiology, and End Results Research Program (SEER) Registry
            to better capture the experience of metastatic cancer patients
            (as outlined by recommendations within the fiscal year 2020
            House LHHS Appropriations Bill).
    _______________________________________________________________________

        Chairman Blunt, Ranking Member Murray, and distinguished members of
    the Subcommittee, thank you once again for considering the views of
    METAvivor and the stage IV metastatic cancer community as you work on
    fiscal year 2021 appropriations for medical research. The community is
    deeply grateful for the $2.6 billion funding increase provided to NIH
    in fiscal year 2020. Please maintain this commitment to supporting
    innovative medical research moving forward.
                                about metavivor
        What is my involvement? I am President of METAvivor, a patient-
    founded, volunteer-led, grassroots organization that funds vital
    research to increase longevity and quality of life for metastatic
    breast cancer patients. It is our sincerest hope that one day efforts
    such as ours, efforts we hope you will also support, promote and
    undertake, will one day make a difference for the more than 500,000
    patients who die annually of a metastasized cancer in the U.S. alone.
    Our disease is defined by the spread of cancer from its original
    location to other vital organs in the body, such as the bones, lungs,
    liver or brain. At present, the disease is fatal for 98 percent of
    those diagnosed. METAvivor was founded in 2009 by four terminally ill,
    metastatic breast cancer patients because everyone around them was
    dying. One of our founders learned there were metastasis researchers
    that had many research concepts, however, there was very little funding
    for the research projects. METAvivor founders decided something had to
    be done and began raising research funds for metastatic breast cancer.
    Within 12 months of organizing, two founders had died, and not long
    after a third founder died. Many more people joined to advocate for
    additional metastatic cancer research funding and the community pressed
    ahead. Today, we have one living founder, Dian ``CJ"Corneliussen, and
    she along with the growing community of patient advocates, continue to
    raise funding for metastatic cancer research.
        Since METAvivor's founding in 2009, METAvivor has awarded 106
    metastatic cancer research grants totaling $13.6 million despite
    sustaining the deaths of 15 Board members. The organization continues
    to grow, but there are limits to what we can achieve alone. We need
    more funding for stage IV metastatic cancer research. Far more funding
    is needed; far more interest is needed; and far more research must be
    accomplished. After 10 years of doing this alone, it is high time other
    organizations; especially the NCI which has a national responsibility
    for all American citizens; even the terminally ill, does right by our
    greater community and adds to its portfolio a program of respectable
    size that addresses the issue and funds the research that will
    ultimately, significantly extend life with quality and hopefully end
    death for the metastatic cancer community as a whole.
                   the facts about metastatic stage iv cancer
        Roughly 600,000 Americans die annually from cancer. Ninety percent
    of these deaths are caused by a metastasis. If we wish to lower the
    death rate, we must tackle metastasis. For more than 20 years, the
    primary focus has been on preventing cancer altogether and if that
    fails, catching it early. But aside from convincing people to stop
    smoking, forbidding smoke in common areas and removing colon polyps
    prior to malignancy, little progress has been made. For most cancers,
    it is believed there are multiple causes, few if any of which are
    known, making prevention a formidable goal. Improved equipment has
    allowed some cancers to be diagnosed as early as stage 0; however,
    stage 0 patients are also metastasizing. And although we are slowly
    adding drugs to the treatment repertoire, a treatment's effectiveness
    often runs out in 2-3 months. Thus, we empty our toolbox of drugs far
    too quickly and we, metastatic patients, die. Saving lives is an
    achievable goal but tragically is not being realized because the focus
    continues to be prevent and early detect. Those goals have been
    maximized. Backs have been turned to the metastatic community long
    enough. It is high time to include metastasis as a major focus area..
                                    my story
        My name is Beth Fairchild. In my former life, I was an artist, a
    mother, a wife, a daughter, a friend. Now, while I may still be all of
    these, I have added fearless fighter and breast cancer advocate to the
    list of things that make me, me. This is my new, cancer life. At 34, my
    life was pretty normal. My husband and I were successful business
    owners. We were raising our daughter and preparing to adopt another. I
    was happy in my personal life and career, I worked out daily and ate
    healthy. Then, there it was: cancer. After months of complaining of
    intestinal discomfort and lack of energy, my doctors discovered my
    ovaries were the size of grapefruits and in danger of rupture. They had
    to come out and, because I had a family history (my mom was diagnosed
    with breast cancer at 44 and my paternal grandmother was dead and
    buried at 33), I decided on a total hysterectomy. My surgery was the
    day after Mother's Day. Tissue samples were sent off to pathology, and
    two days later, I was told I had breast cancer. After my diagnosis, I
    came home to die. I was in agony from the pain of surgery and my head
    was spinning. I couldn't see past that moment in time. But it got
    better. Every. Day. My body healed. I got stronger. I endured 18 weeks
    of chemo and survived! I was a 34-year-old, post-menopausal, bald-
    headed, terminal cancer patient, but I was alive and LIVING. I set out
    to take back control of my life.
        My children were my first motivation. I saw the fear in their eyes.
    Mommy couldn't assure them that things would be ok, but I could show
    them I wasn't going to give up. I talked candidly with them about my
    condition and treatment. I got up every morning and took them to
    school, even the days I didn't feel like it. I was a mom first, and
    they kept me going. My job kept me going. I'm an artist. I make
    tattoos. My husband and I have five studios and I have made my career
    in the tattoo industry. My specialty is permanent cosmetics and areola
    restoration for breast cancer patients. Ironic, huh? On the days I had
    to see my breast cancer clients, I knew what the procedure meant to
    them, so I would leave chemo and go straight to the studio and help a
    woman feel whole again. It was therapy to me. Then, I found support
    groups. I had wanted to talk to and be with other women like me. There
    were several groups available in my town in North Carolina; however, I
    was the youngest person there by at least 20 or 30 years. I'm in no way
    minimizing the severity of cancer in older patients, but it was hard to
    hear others speak about not seeing their grandkids grow into adults
    when I felt like I wouldn't even see my daughter graduate from high
    school. When I was diagnosed with stage IV breast cancer, I was in the
    prime of my life. Cancer is a daily struggle in any season of life, but
    the under-40 demographic has to not only juggle surgeries and
    treatments, but oftentimes careers, new marriages, or maybe dating.
    Many have young kids already, but some women will never experience
    childbirth because their ovaries are suppressed from hormonal
    treatments or, like me, have had them removed in order to slow the
    cancer's progress. Realizing the sacrifices of these men and women, as
    well as myself, made, the lack of awareness about metastatic cancer was
    disturbing. I thought my condition was rare, but, turns out, not so
    much. There are 600,000 people with metastatic cancer. There are 41,000
    with metastatic breast cancer that die every year, that is about 113
    per day. We must increase research funding for new treatments. We must
    make sure that families like mine have hope and that my two little
    girls know that we are working toward life extending treatments.
        Through local events and social media, I have tried to help spread
    the under-reported message of metastatic breast cancer. I started a
    social media movement on Facebook called Stomp Out BC using the hashtag
    #dontignorestageiv created by METAvivor. I am now the Immediate Past
    President of METAvivor and work alongside others to raise funds for and
    draw attention to metastatic breast cancer until my dying breath. No
    one can say for sure when my time will be up, or even for certain that
    this ``thief of life'' we call cancer will be the cause, but short of a
    miracle--and I do still believe in miracles--I will die with this
    cancer in my body. In the interim, I hope the lives of the more than
    600,000 people with stage IV metastatic cancer is considered when
    making decisions about the future of cancer research and especially
    funding the stage IV metastatic cancer research. METAvivor has worked
    hard to fund research. Since 2009, we have funded over $10 million but
    we need more...stage IV metastatic cancer needs more research.

        [This statement was submitted by Beth Fairchild, Immediate Past
    President, METAvivor.]
                                     ______

              Prepared Statement of The Michael J. Fox Foundation
        The Michael J. Fox Foundation for Parkinson's Research (MJFF)
    appreciates the opportunity to comment on fiscal year 2021
    appropriations for the U.S. Department of Health and Human Services.
    Our comments focus on the importance of Federal investment in
    biomedical research at the National Institutes of Health (NIH) and the
    Centers for Disease Control and Prevention (CDC). MJFF supports at
    least $44.7 billion for the NIH, as well as the continued appropriation
    of $5 million to proceed with the pilot of the National Neurological
    Conditions Surveillance System at the CDC.
        In providing more than $900 million in Parkinson's disease (PD)
    research funding since our founding in 2000, our Foundation has
    fundamentally altered the trajectory of progress toward a cure.
    However, MJFF investments are a complement to, rather than a substitute
    for, federally funded research. Robust and reliable Federal funding is
    imperative to drive progress. There are many potential Parkinson's
    breakthroughs on the horizon, which are critically needed by the
    millions living with this disease and the many more who will age into
    Parkinson's risk.
      national institutes of health research furthers progress toward new
                                   treatments
        Parkinson's is a chronic, progressive neurological disorder
    affecting approximately one million people (including 110,000 veterans)
    in the United States. Every year, Parkinson's costs Americans $52
    billion--$25 billion of which is paid for by the Federal Government in
    Medicare, Supplemental Security Income and Social Security Disability
    Insurance costs. Without intervention, the prevalence of Parkinson's is
    expected to more than double by 2040. The financial impact and rising
    prevalence can be mitigated through research to treat and cure PD.
        Investing in NIH research on the front end to develop innovative
    therapies and cures can lower back-end costs to the Federal Government.
    Ninety percent of the Parkinson's population relies on Medicare for
    healthcare coverage, and up to one-third of people with PD are dual-
    eligible for Medicaid due to their income or disability status. New
    treatments would relieve the burden on Medicare, Medicaid and the
    Department of Veterans Affairs. Additionally, NIH funds research in all
    50 states, and every dollar of funding generates two dollars in local
    economic growth. This is important for the economic strength and
    vitality of cities and towns across America.
        We appreciate the committee's continued support of NIH through
    increases over the past several years. However, those increases only
    helped NIH funding begin to catch up with inflation, and many good
    studies remain unfunded. In 2018, NIH funded just under 20 percent of
    investigator-initiated grants, leaving an untold number of
    breakthroughs undiscovered. Patients and the medical community deserve
    stable and reliable funding growth that allows for research progress
    and supports innovative projects that drive cures. It is time to fund
    the NIH in a robust way that allows for the National Institute of
    Neurological Disorders and Stroke and the National Institute on Aging
    at NIH to at least double its funding for Parkinson's disease research.
        While industry and philanthropy have prioritized Parkinson's
    research, these investments are not enough. Researchers rely on
    federally funded basic research to make the discoveries from which come
    deeper understanding and therapeutic development. The biggest non-
    profit organizations and most generous philanthropists cannot come
    close to the resources or scope of a Federal agency committed to human
    health and economic strength such as NIH.
        The following projects leveraged Federal dollars to push
    Parkinson's research forward in the past year:
    Coordination of the Global Parkinson's Genetics Program
        The Global Parkinson's Genetics Program (GP2) is a five-year study
    supported through the Aligning Science Across Parkinson's (ASAP)
    initiative, created by the Milken Institute Center for Strategic
    Philanthropy with support from the Sergey Brin Family Foundation. GP2
    aims to create a resource of genetic data for scientists to analyze for
    greater understanding of the genetic architecture of PD, which could
    point to new measures and treatments for the disease. Led by NIH
    Distinguished Investigator Andrew Singleton, PhD, GP2 will analyze
    samples from more than 150,000 people with Parkinson's worldwide.
        GP2 is leveraging funding from ASAP--of which MJFF is the
    implementing partner, lending its grant-making infrastructure and
    business and scientific expertise--and NIH resources to gather samples
    and generate data from a diverse pool of participants around the globe.
    These efforts will significantly expand the understanding of the causes
    of Parkinson's disease and point to new ways scientists may intervene
    to stop or even prevent it.
    Molecular Fingerprinting and Data Analysis across Parkinson's Studies
        Launched in 2018, the Accelerating Medicines Partnership
    Parkinson's disease (AMP PD) program made strides in the past year
    toward greater use and generation of data toward new disease insights.
    AMP PD is a public-private partnership between the NIH, multiple
    biopharmaceutical and life sciences companies, and MJFF and ASAP.
    Managed through the Foundation for the NIH (FNIH), the program aims to
    identify and validate the most promising biological targets for
    therapeutics.
        In 2019, AMP PD launched its Knowledge Portal harmonizing and
    offering data from across four MJFF- and/or NIH-funded studies for
    qualified researchers to compare toward novel disease insights and
    identification of biomarker candidates and therapeutic targets. The
    program also is funding protein profiling from study samples--
    generating more data from which to learn--and data analysis of that
    already in the AMP PD Knowledge Portal. This ambitious program is
    building infrastructure and financially supporting efforts toward
    breakthroughs.
    Testing of New Treatments to Stop Parkinson's Disease
        With supplemental MJFF funding, NIH scientists also are testing
    novel therapeutic approaches to slow or stop Parkinson's progression.
    For example, Richard Youle, PhD, at the National Institute of
    Neurological Disorders and Stroke, part of the NIH, is working on a
    project to boost breakdown of mitochondria (the cell's energy center).
    Mitochondria build-up may be toxic and lead to cell death. Ellen
    Sidransky, PhD, at the National Human Genome Research Institute, also
    part of the NIH, is testing activation of calcium channel TRPML1, which
    also may help the cell clear out impaired or excess cell parts. These
    projects are moving the field closer to new treatments that could
    protect cells, slow disease and ease symptoms.
        centers for disease control and prevention support helps gather
                             valuable disease data
        While there are rough estimates of the number of people diagnosed
    with PD, we do not currently have accurate and comprehensive
    information on how many people are living with the disease, who they
    are and where they are located. This lack of core knowledge makes it
    difficult to assess potential environmental triggers and other patterns
    of disease. This absence of data also slows Parkinson's research and
    drug development and makes it difficult to ensure healthcare services
    are allocated properly.
        The National Neurological Conditions Surveillance System (NNCSS)
    was authorized by the 21st Century Cures Act, signed into law in
    December 2016 (Public Law 114-255) and received its first appropriation
    in fiscal year 2019. The CDC began its development and implementation
    work, ensuring that the NNCSS is an effective tool for all
    stakeholders--patients, researchers, Congress and the public. The NNCSS
    will be developed in three stages, which CDC will carry out in
    association with partners and stakeholders.
        First, the agency is working on demonstrations using multiple
    sclerosis (MS) and Parkinson's disease, to determine how it can have
    the biggest impact by exploring complex data sources with innovative
    analytic methods, and capturing lessons learned. This stage will take 2
    years. In fiscal year 2020, CDC will evaluate the newly purchased data
    sources and, as resources allow, will purchase and evaluate the final
    data sources.
        Second, the agency will build out the NNCSS for MS and PD, as
    resources allow, using successful approaches from the demonstration
    projects, and checking methods, costs, and opportunities to determine
    which approaches will help efficiently extend the NNCSS to other
    neurological conditions.
        Third, it will apply these model approaches to extend the NNCSS to
    other neurological conditions.
          continued support for research is critical to drive progress
        Momentum in Parkinson's disease research is strong. While
    researchers are uncovering more about the causes and progression of
    Parkinson's and testing many new treatments, many questions remain, and
    more people are facing a PD diagnosis. We need the financial and data
    resources to find answers and slow or halt the disease. Robust
    investments in NIH and CDC will continue to propel research forward,
    leading to life-changing treatments and, ultimately, a cure.
        Please allocate $44.7 billion for the NIH, as well as the fully
    authorized amount of $5 million to continue the work of the National
    Neurological Conditions Surveillance System at the CDC. Thank you for
    the opportunity to testify.

                                     ______

                   Prepared Statement of Montana Karen  deg.
                      Prepared Statement of Karen Montana
        The NIMH research goals for 2020-2025 offer little hope for
    advancements for those with severe mental illness including
    schizophrenia and bipolar disorder.
        As a mother of a son with bipolar disorder and severe depression, I
    urge you to make sure the NIMH spends an adequate amount of its budget
    on helping people with these and others serious mental disorders. It is
    gut wrenching and heart breaking to see my son suffer, and the impact
    it has on our whole family, especially when I know there is money
    available for more research and testing to find more effective
    treatment for him.
        Even after considerable response identifying new treatment
    initiatives, the final draft of the NIMH showed little change to their
    goals and objectives. This is a public agency being funding by our tax
    dollars. We need relief and help for our family members who suffer
    mental illness. The NIMH has an unprecedented budget for the next 5
    years with which they could make a real impact on helping people with
    severe mental illness live better lives.
        Please ensure that this funding will be used to help find more
    effective treatments for people with severe mental health disorders,
    including bi-polar disorder. Until you have seen your child suffer the
    ramifications with such an illness, you will never know the pain and
    suffering he goes through, and that our family lives through. It is gut
    wrenching and heartbreaking. We live in a constant state of anxiety and
    trauma, not knowing what the next day holds for our son, and thus for
    our family. Please, I beg you, make sure the NIMH does its job in
    finding treatments for these disorders.

        Sincerely and Desperately.
                                     ______

               Prepared Statement of Mothers of the Mentally Ill
        Dear Senators,
        My son died by suicide March 18, 2019. His severe form of bipolar
    disorder, which included psychosis, was extremely hard to treat. Not
    knowing how to help, when I knew my son's brain was malfunctioning, was
    a horrible vantage point for a mother. I watched an antiquated and
    broken mental healthcare system fail. Medications that for decades have
    provided limited relief were the first choice of providers, and they
    created their own set of dangerous symptoms.
        My son had a complicated brain disease, but no provider ever asked
    questions about what might be happening in his brain. They instead
    focused on his thoughts--using psychology to treat a psychiatric
    condition. Only a few providers even knew that genetic testing could
    provide clues about a person's metabolism and which prescriptions might
    not work as planned. One doctor called it ``hocus pocus.'' That ill-
    informed attitude is one result of underfunded research.
        I request that you commit more NIMH dollars to research about cause
    and treatment for the most serious forms of bipolar disorder and
    schizophrenia. Dollars for this critical area of research have shrunk
    desperately in the past 15 years, even as NIMH budgets have increased.
        Severe brain impairment in a few individuals (about 2 percent of
    the population) is costing society disproportionately. Like my son,
    most individuals with the most debilitating psychiatric disorders end
    up incarcerated, homeless, impoverished and often dead from suicide.
    This is unconscionable in a society with sophisticated science that can
    do so much better.
        The medications my son was offered made him miserable, pre-
    diabetic, and unable to think clearly. Before he got sick, he was a
    state champion in extemporaneous debate and a competitive swimmer.
    After he got sick, he struggled to remember which bus route would get
    him home and rarely had energy to participate in physical fitness.
        We need research to uncover clues about what happens in the brain.
    When my son was 6, he had a bad Strep Throat with a fever of 105
    degrees. After he began to recover, he developed an uncontrollable tic
    disorder and was diagnosed with Tourette's Syndrome. Some basic
    research led me to believe he suffered from Pediatric Autoimmune
    Neuropsychiatric Disorder Associated with Strep (PANDAS). This was a
    known, named condition and made sense for his diagnosis, but no one in
    the psychiatric community knew what to do with that information.
        My son's Tourette's Syndrome included explosive anger and may have
    indicated a brain inflammation that ultimately made him susceptible to
    bipolar disorder. He had many unusual and significant bacterial
    infections throughout his life, and I believe his immune response to
    infection was a significant factor in his psychiatric condition. There
    was no pathway to investigate any of those possibilities because they
    are not being studied in any significant way within mainstream medical
    research.
        I recently read Susannah Cahalan's book, Brain on Fire, an
    extraordinary telling of her personal experience with an autoimmune
    reaction to an illness that led to psychosis and other symptoms of
    serious mental illness. Traditional psychiatric approaches failed to
    help with old-school anti-psychotics. Cahalan's family sought help from
    well-resourced and clever doctors who determined that her brain was
    ``on fire'' from inflammation--a condition called anti-NMDA receptor
    encephalitis. She needed an entirely unique medical protocol, which
    enabled her to recover her mind and her life. Cahalan's diagnosis is
    called ``rare,'' but I question whether it truly is. I wonder how many
    individuals sleeping in gutters, wasting away in prisons and jails,
    might have a condition like Cahalan's. Why does no one bother to
    investigate?
        A dear friend has a son diagnosed with schizophrenia who has been
    in 5-point restraints in a state hospital for the better part of the
    past year. He is known to have epilepsy. He's had encephalitis.
    Medication seems to make him worse. Electro-Convulsive Therapy (ECT)
    sometimes helps, but it's controversial and hard to access. It seems
    clear that he has suffered from seizures his whole life and his brain
    is inflamed, yet psychologists and social workers have been tasked to
    talk him out of his illness.
        In order for psychiatry to step into its critical role as a field
    of medicine that studies and treats the organ of its investigation--the
    brain--sophisticated research about the root causes and treatments for
    serious mental illness are a critical need.
        Please require that significantly more NIMH dollars move toward
    vital research about the causes and treatments for schizophrenia and
    bipolar disorder. Thank you.
        Sincerely.

        [This statement was submitted by Jerri Clark, Director, Mothers of
    the Mentally Ill.]
                                     ______

                           Prepared Statement of NAF
        NAF is a national network of education, business, and community
    leaders who work together to ensure high school students are college,
    career, and future ready. NAF appreciates the opportunity to submit
    testimony to the Senate Labor, Health and Human Services, Education,
    and Related Agencies Appropriations Subcommittee on fiscal year 2021
    report language for the Department of Labor and Department of Education
    addressing work-based learning for high school students.
        For 40 years, NAF has been partnering with existing high schools in
    high-need communities to enhance school systems by implementing NAF
    academies--small learning communities within traditional high schools.
    We have partnered with hundreds of leading companies to provide work-
    based learning, career-relevant knowledge and hands-on experiences.
    Currently, NAF supports more than 110,000 students in 620 academies at
    406 public high schools across 34 states, Washington, D.C., Puerto
    Rico, and the U.S. Virgin Islands.
        NAF's educational design ignites students' passion for learning and
    provides employers in the students' local area the opportunity to shape
    America's future workforce by transforming the learning environment to
    include work-based learning experiences.
        Work-based learning brings the classroom to the workplace and the
    workplace to the classroom. This instructional strategy provides
    students with a well-rounded skill set that goes beyond academics and
    includes the soft skills needed to succeed in college and the working
    world. Employers seek employees with workforce ready skills that
    include collaboration, attention to detail, effective communication,
    critical thinking, and active learning. NAF's approach to work-based
    learning is centered on a continuum of experiences beginning with
    career awareness, progressing to career exploration, and culminating in
    career preparation activities, including paid internships.
    Representatives from the employer community speak to classes, host
    college and career skills workshops, and take part in mock interviews.
    Students have the opportunity to tour worksites and network with and
    shadow business professionals. Work-based learning culminates in a paid
    internship that allows students to apply their classroom skills and
    learn exactly what it takes to succeed in the workplace.
        Today, 65 percent of all jobs, and nearly all high-paying jobs,
    require some form of postsecondary education or training. Work-based
    learning gives students opportunities to apply academic and technical
    knowledge, while fostering workforce ready skills such as working in
    teams, professionalism, problem solving, and critical thinking. These
    skills can add up to 20 percent to a college graduate's earnings. Most
    importantly, work-based learning helps students build positive
    relationships with adults and grow their social capital.
        Work-based learning is a winning solution for high school students,
    employers, and their communities. It is imperative, especially to the
    employers struggling to fill positions with skilled and diverse
    employees, to encourage deeper and wider inclusion of this real-world,
    time-tested, skills-based workforce development program into the
    community. Together, the schools and employers create a talent pipeline
    and a pool of future leaders.
        There are more than 15.3 million high school students in the United
    States, according to the U.S. Department of Education. High school
    graduation is the pathway to the continued growth and development of
    our youth and our communities. The potential long term impact of
    students not graduating spreads beyond the lives of those students and
    their families. For example, according to the report ``By the numbers:
    Dropping out of High School'' (Breslow, 2012), a youth who drops out of
    high school can expect to earn $10,386 less annually than a high school
    graduate, and $36,424 less annually than a college graduate. In
    addition, the report showed that a youth who does not graduate from
    high school could cost taxpayers an average of $292,000 over a
    lifetime.
        Engaging high school students in work-based learning experiences
    ensures these students graduate college, career, and future ready,
    which is essential, especially for students who fail to see the
    connection between high school academics and future careers. In a
    recent study, students enrolled in a NAF program in grade 9 and were
    identified as at-risk of not graduating were 5 percentage points more
    likely to graduate from high school than their non-NAF counterparts.
    NAF academy students have a 99 percent graduation rate.
        Showing students the connection between school and careers is
    critical. Work-based learning engages students in school; so they are
    more likely to graduate and are prepared with the necessary skills.
    This act of prevention benefits employers and the community at-large.
    NAF urges the subcommittee to include the requested fiscal year 2021
    report language as outlined below.
                              department of labor
        NAF encourages communities to include experts in work-based
    learning, particularly those with an expertise at the secondary level,
    on local workforce boards. NAF urges the subcommittee to support and
    advocate for the inclusion of the following report language in the
    fiscal year 2021 Appropriations bill.
        Research shows that participation in work-based learning during
    high school has a positive impact on students and helps them secure
    higher-quality jobs, boosting equity and economic opportunity. The
    Committee urges the Department to encourage local secondary educational
    authorities with expertise in work-based learning to be included as
    part of the required education and training organization
    representatives on local Workforce Development Boards to provide
    guidance on work experience, including summer employment opportunities.
                            department of education
        NAF encourages work-based learning included as a quality indicator
    in state and local education accountability programs. NAF urges the
    subcommittee to support and advocate for the inclusion of the following
    report language in the fiscal year 2021 Appropriations bill.
        To further support work-based learning and future career
    preparedness for high school students, the Committee encourages the
    Department to support including work-based learning and paid
    internships in state and local education accountability programs as a
    quality indicator. This will help ensure that decision makers can
    monitor which student populations are or are not receiving access to
    these opportunities.
                                   conclusion
        Thank you for your attention to the importance of including work-
    based learning experiences for high school students. NAF appreciates
    the opportunity to share its expertise; and thanks you for your
    consideration of these requests that will help improve secondary
    education for our nation's students and embolden their future success.

        [This statement was submitted by JD Hoye, CEO, NAF.]
                                     ______

    Prepared Statement of the National Alliance for Eye and Vision Research
        NAEVR, which serves as the ``Friends of the National Eye
    Institute,'' is a 501(c)4 non-profit advocacy coalition comprised of 50
    organizations involved in eye and vision research, including
    professional societies in ophthalmology and optometry, patient and
    consumer groups, private funding foundations, and industry. NAEVR
    thanks Congress, especially the House and Senate Appropriations
    Subcommittees on Labor, Health and Human Services, and Education
    (LHHS), for the strong bipartisan support for National Institutes of
    Health (NIH) funding increases from fiscal years 2016 through fiscal
    year 2020. The $11.6 billion NIH increase has helped the agency regain
    some of the ground lost after years of effectively flat budgets.
        NAEVR is grateful for the recent bipartisan agreements to provide
    supplemental appropriations for NIH and other key health programs as
    the healthcare and research community responds to the COVID-19
    pandemic. To maximize our country's ability to develop countermeasures
    against COVID-19 and to sustain the research momentum, NAEVR urges
    Congress to appropriate $44.7 billion for the NIH, a $3 billion or 7.2
    percent increase, over the fiscal year 2020 program level and allowing
    for: meaningful growth above inflation in the base budget to support
    promising science across all Institutes and Centers (ICs); funding from
    the Innovation Account established through the 21st Century Cures Act
    which would supplement NIH's base budget, as intended, through
    dedicated funding for specific programs; and support for early-stage
    investigators.
        Additionally, due to the strain COVID-19 is placing on the research
    infrastructure and strict limits of the fiscal year 2021 discretionary
    spending caps, NAEVR supports bipartisan proposals to exempt key health
    programs, including NIH, from the fiscal year 2021 caps. NAEVR also
    requests that the LHHS bill is structured to facilitate emergency
    funding, as necessary, to maintain the momentum of research emerging
    from past NIH investment such that the return on that investment is
    fully realized with new diagnostics and therapies.
        NAEVR also urges Congress to appropriate $875 million for the NEI,
    a $51 million or 6.2 percent increase over enacted fiscal year 2020.
    The NEI is the world leader in sight-saving and vision-restoring
    research. Congress must ensure robust NEI funding to address the
    challenges of The Decade of Vision 2010-2020--as recognized by Congress
    in S. Res. 209 in 2009--which include an aging population,
    disproportionate risk/incidence of eye disease in fast-growing minority
    populations, and the impact on vision from numerous chronic diseases
    and their treatments/therapies.
        Despite the total fiscal year 2016-2020 funding increases of $146
    million, NEI's enacted fiscal year 2020 budget of $824.1 million is
    just 21 percent greater than the pre-sequester fiscal year 2012 budget
    of $702 million. Averaged over the eight fiscal years, the 2.6 percent
    annual growth rate is less than the average annual biomedical inflation
    rate of 2.8 percent, thereby eroding purchasing power, which in fiscal
    year 2019 was below that of fiscal year 2012 and equivalent to that in
    fiscal year 2000. Maintaining the momentum of vision research is vital
    to vision health, as well as overall health and quality of life. Since
    the U.S. is the world leader in vision research and training the next
    generation of vision scientists, the health of the global vision
    research community is also at stake.
        With the COVID-19 pandemic, the NEI also faces additional
    challenges, as both the working age population and students may
    potentially rely exclusively on electronic communications devices and
    e-learning platforms into the future. Since increased rates of myopia,
    dry eye, and eye strain are associated with lengthy exposure to these
    communications tools, the NEI will play a pivotal role in research that
    ensures eye health along the continuum of life--and especially as it
    relates to the vision care that children receive during their
    developmental years.
            nei leads in genetic and regenerative medicine research
        As recently as the March 21, 2018, NEI 50th Anniversary
    Congressional Reception, NIH Director Francis Collins, MD, PHD said the
    following about NEI:
        ``Due to the architecture, accessibility, and the elegance of the
    eye, vision research has always been a few steps ahead in biomedical
    research. Understanding the genetic basis of eye diseases has led the
    way for understanding the genetic basis of many common diseases.''
        The NEI has been a leader in genetics/genomics research and
    regenerative medicine.
      --Genetics/Genomics: Vision researchers worldwide participating in
            NEI's Glaucoma Genetics Collaboration Heritable Overall
            Operational Database (NEIGHBORHOOD) Consortium have identified
            133 genetic variants that predict within 75 percent accuracy a
            person's risk for developing glaucoma related to elevated
            intraocular pressure (IOP). Among the 133 variants, 68 had not
            been previously linked to IOP, and their loci point to cellular
            processes, such as lipid metabolism and mitochondrial function,
            that contribute to IOP. By understanding these cellular
            processes that can increase IOP and cause optic nerve damage,
            clinicians may be able to make an earlier diagnosis and
            researchers may be able to develop neuroprotective therapies to
            potentially halt disease progression.
      --NEI-funded research has also made discoveries of dozens of rare eye
            disease genes possible, including the discovery of RPE65, which
            causes congenital blindness called Leber congenital amaurosis
            (LCA). As of late 2017, NEI's initial efforts led to a
            commercialized, Food and Drug Administration (FDA)-approved
            gene therapy for this condition. These gene-based discoveries
            are forming the basis of new therapies that treat the disease
            and potentially prevent it entirely.
      --Regenerative Medicine: NEI is at the forefront of regenerative
            medicine with its Audacious Goals Initiative (AGI) for
            Regenerative Medicine, which launched in 2013 with the goal of
            restoring vision. Initially asking a broad constituency of
            scientists within the vision community and beyond to consider
            what could be done if researchers employed this new era of
            biology, the AGI currently funds major research consortia that
            are developing innovative ways to image the visual system.
            Researchers can now look at individual nerve cells in the eyes
            of patients in an examination room and learn quite directly
            whether new treatments are successful. Another consortium is
            identifying biological factors that allow neurons to regenerate
            in the retina. And the AGI is gathering considerable momentum
            with current proposals to develop disease models that may
            result in clinical trials for therapies within the next decade.
      --In late 2019, NEI began a first-in-human clinical trial that tests
            a stem cell-based therapy from induced pluripotent stem cells
            (iPSC) to treat geographic atrophy, also known as the ``dry''
            form of Age-related Macular Degeneration (AMD), the leading
            cause of vision loss among people age 65 and older. This trial
            converts a patient's own blood cells to iPS cells which are
            then programmed to become retinal pigment epithelial (RPE)
            cells, which nurture the photoreceptors necessary for vision
            and which die in geographic atrophy. Bolstering remaining
            photoreceptors, the therapy replaces dying RPE with iPSC-
            derived RPE.
      congress must robustly fund the nei as it addresses the increasing
                  burden of vision impairment and eye disease
        NEI's fiscal year 2020 enacted budget of $824.1 million is less
    than 0.5 percent of the $167 billion annual cost (inclusive of direct
    and indirect costs) of vision impairment and eye disease, which was
    projected in a 2014 Prevent Blindness study to grow to $317 billion--or
    $717 billion in inflation-adjusted dollars--by year 2050. Of the $717
    billion annual cost of vision impairment by year 2050, 41 percent will
    be borne by the Federal Government as the Baby-Boom generation ages
    into the Medicare program. A 2013 Prevent Blindness study reported that
    direct medical costs associated with vision disorders are the fifth
    highest -only less than heart disease, cancers, emotional disorders,
    and pulmonary conditions. The U.S. is spending only $2.50 per-person,
    per-year for vision research, while the cost of treating low vision and
    blindness is at least $6,680 per-person, per-year. [http://
    costofvision.preventblindness.org/]
        In a May 2016 JAMA Ophthalmology article, NEI-funded researchers
    reported that the number of people with legal blindness will increase
    by 21 percent each decade to 2 million by 2050, while best-corrected
    visual impairment will grow by 25 percent each decade, doubling to 6.95
    million people-with the greatest burden affecting those 80 years or
    older. [http://jamanetwork.com/journals/jamaophthalmology/article-
    abstract/2523780?resultClick=1]
        In an August 2016 JAMA Ophthalmology article, the Alliance for Eye
    and Vision Research (AEVR, NAEVR's educational foundation) reported
    that a majority of Americans across all racial and ethnic lines
    describe losing vision as having the greatest impact on their day-to-
    day life. Other studies have reported that patients with diabetes who
    are experiencing vision loss or going blind would be willing to trade
    years of remaining life to regain perfect vision, since they are
    concerned about their quality of life. [http://jamanetwork.com/
    journals/jamaophthalmology/article-abstract/2540516?resultClick=1]
        Investing in vision health is an investment in overall health.
    NEI's breakthrough research is a cost-effective investment, since it
    leads to treatments and therapies that may delay, save, and prevent
    health expenditures. It can also increase productivity, help
    individuals to maintain their independence, and generally improve the
    quality of life--as vision loss is associated with increased
    depression/accelerated mortality.
        In summary, NAEVR requests fiscal year 2021 NIH funding of at least
    $44.7 billion and NEI funding of $875 million. NAEVR thanks the
    Subcommittee for the opportunity to submit this written testimony,
    especially as it grapples with the challenges now and into the future
    from the COVID-19 pandemic.
        For more information, visit NAEVR's Web site at
    www.eyeresearch.org.

        [This statement was submitted by James Jorkasky, Executive
    Director, National Alliance for Eye and Vision Research.]
                                     ______

     Prepared Statement of the National Alliance for Public Charter Schools
        Mister Chairman and Members of the Subcommittee, I am pleased to
    present the views of the National Alliance for Public Charter Schools
    on the fiscal year 2021 appropriation for the Charter Schools Program
    (CSP), which is administered by the U.S. Department of Education. I
    thank the Subcommittee for maintaining strong support for the CSP,
    including by providing a significant funding increase to $440 million
    fiscal year 2019 and continuing that level in 2020. The CSP continues
    to play a critical role in expanding educational opportunities for
    families and in improving public school outcomes nationwide. As the
    Subcommittee begins consideration of the fiscal year 2021 Labor, Health
    and Human Services, Education and Related Agencies appropriations
    legislation, we request an increase in funding for the CSP to at least
    $500 million, with a reservation of 30 percent for the replication and
    expansion of high-quality charter schools. We strongly urge the
    Subcommittee to maintain a specific appropriation for the CSP and to
    reject the Administration's education block grant proposal. The
    President's proposal would jeopardize the ability of community leaders
    to start new schools. We also urge you to continue your strong support
    for Title I and the Individuals with Disabilities Education Act, both
    of which provide critical funding for public schools, including charter
    schools.
                   the growth and success of charter schools
        Over the last year or so, and notwithstanding charter schools'
    achievements, we have seen a number of misconceptions about those
    schools put forward in the media and in other public discourse. So
    let's be clear on what charter schools are: they are public schools,
    supported by taxpayers and open to all students, without entrance
    requirements. Each State decides who may authorize its charter schools
    and how they are to be held accountable for meeting the goals laid out
    in their charters. Moreover, while charter schools typically have more
    flexibility than non-charter schools--in setting the curriculum, hiring
    teachers and other staff, determining the school calendar, and adapting
    to meet the needs of their students-they are required to meet the same
    academic testing requirements as other schools.
        Most importantly, although there is variety in the performance of
    charter schools, in the main they are delivering for their students.
    The 2015 Urban Charter School Study, from the Center for Research on
    Education Outcomes (CREDO) at Stanford University, found that students
    in urban charter schools gained an average of 40 additional days of
    learning per year in math and 18 days in reading, compared to their
    non-charter-school peers. Moreover, the study found that the longer a
    student attends an urban charter school, the greater the gains; four or
    more years of enrollment in such a school led to 108 additional
    learning days in math and 72 in reading. Research in individual States
    and communities, such as 2019 studies of North Carolina, Boston, and
    Newark charter schools, provides additional evidence backing up these
    national findings. Charter schools have succeeded in offering high-
    quality options to students, particularly in low-income urban districts
    where those options are most sorely needed and particularly for African
    American and Hispanic students as well as students from low-income
    families.
             the importance of the federal charter schools program
        The CSP was first authorized in 1994, as a bipartisan effort of
    President Clinton and leaders of both parties in Congress. The program
    was originally created to support the start-up of new schools, but now
    also funds the expansion and replication of successful charter schools
    and helps charter schools gain access to school facilities. It has
    continued to receive bipartisan support over more than two and a half
    decades.
        Since its inception, the CSP has awarded some $3.9 billion to
    States, charter management organizations (CMOs), and other entities. To
    put that number in context, it's about 1 percent of the appropriation
    for ESEA Title I LEA Grants over that time period. The result: the
    number of charter schools has grown from only a handful in the early
    1990s to more than 7,500 today. Many of those schools have relied on
    the CSP to get off the ground because, while States and localities have
    provided per-pupil funding to their public schools, they have not
    provided new charter schools with funds for planning, staff training,
    equipment and materials, renovations, recruitment, and other necessary
    start-up activities. In addition, State appropriations have often not
    given charter schools the same level of per-pupil support as non-
    charter schools, and often have not addressed their facilities needs.
        Unfortunately, with States now facing severe resource constraints
    because of the COVID-19 crisis, insufficient State support for charter
    schools could become even more of a problem over the next few years.
    Charter schools more typically serve communities with low property tax
    revenues, and thus depend more heavily than the average school on State
    funding. When States experience reductions in income, sales, and other
    taxes and thus have to cut funding for public education, charter
    schools will be particularly affected.
        Charter school enrollment--now at nearly 3.3 million students--has
    grown rapidly, but it has not kept up with the demand for seats in
    charter schools. Surveys indicate that 5 million additional students
    would attend a charter school if space were available at a convenient
    location. Many of those are students who attend schools identified as
    in need of support and improvement under Title I, that is, schools that
    are not meeting State performance targets either for the school as a
    whole or for one or more student subgroups. The increase we are
    recommending would enable the creation of charter schools to serve more
    of the students and families who want them.
                            fiscal year 2021 request
        As I noted at the beginning of my statement, our request for fiscal
    year 2021 is $500 million, including 30 percent ($150 million) for
    grants to CMOs for the replication and expansion of high-quality
    charter schools. Although we understand that the amount of funding
    available to the Subcommittee will be tight, because of the budget caps
    and COVID-19 relief efforts, we strongly believe that this requested
    increase would be a wise investment. As schools across the nation
    grapple with the challenges of distance learning, charter schools have
    shown incredible resilience and leadership. Charter school autonomy,
    and the flexibility that it affords, allowed charter schools to pivot
    very quickly to rise to the challenges presented by the closing of
    school buildings. Schools like Common Ground in New Haven Connecticut
    deliver free fresh produce directly to the doors of those in need
    weekly; Impact Public Schools in Tukwila, Washington built partnerships
    to provide their students with Wi-Fi hotspots, laptops and free meals;
    and Springs Charter Schools in Florida offered their online learning
    curriculum for free to all, reaching more than 5,000 students today.
        An increase of $60 million would allow States and CMOs to support
    the creation of new charter schools, reducing the waiting lists and
    providing high-quality educational options to more families,
    particularly those in communities where those opportunities are not
    commonly available. In many cases the very communities hit hardest by
    the virus and its economic fallout.
        Our request would also enable more CMOs to replicate and expand the
    charter schools they operate or manage. A study by CREDO found that the
    schools funded through the Replication and Expansion competition have
    made impressive growth in reading and math: more than half of the
    grants have supported CMOs that outpaced non-charter schools in
    academic growth in both subjects.
        Finally, our request would help charter schools meet their very
    significant school facilities needs. Charter schools generally do not
    have the same access to the funding sources that support the facilities
    needs of other public schools, such as municipal bonds, property tax
    revenues, and State school facilities programs. They have had to scrape
    by in buildings not designed for learning or use funds that should have
    been available for instruction to cover facilities needs, or simply not
    open at all for lack of an adequate building. The two small facilities
    programs included in the CSP, Credit Enhancement for Charter School
    Facilities and the State Facilities Grants, help fill some of this
    unmet need.
                                   conclusion
        The National Alliance for Public Charter Schools takes great pride
    in the growth and accomplishments of public schools over the last
    quarter century. Our schools' enrollments continue to climb, and more
    and more studies have found that charter schools are succeeding, that
    they increase achievement and meet the other needs of a diverse and
    often very needy student populations. Indeed, at a very critical time
    in our nation's history, when innovative approaches to educating all
    students are needed, charter schools stand ready to offer that
    innovation and have a track record of doing so successfully. The
    flexibility granted by their charters makes it feasible for them to
    adopt to new operational challenges and succeed with the student
    populations that are at the greatest risk of educational failure
    because of the disruptions resulting from COVID-19. But they cannot do
    so with insufficient funding.
        This success of charter schools could not have been achieved
    without the CSP, which continues to be a vital source of support. We
    ask that you continue that support and accept our recommendation for
    fiscal year 2021.

        [This statement was submitted by Nina Rees, President and CEO,
    National
    Alliance for Public Charter Schools.]
                                     ______

         Prepared Statement of the National Alliance on Mental Illness
        Chairman Blunt, Ranking Member Murray and distinguished members of
    the Subcommittee, the National Alliance on Mental Illness (NAMI) would
    like to offer our views on the Subcommittee's fiscal year 2021 bill.
    NAMI is the nation's largest grassroots mental health organization
    dedicated to building better lives for the millions of Americans
    affected by mental illness. NAMI advocates for improved research and
    innovation, increased access to care, and comprehensive services and
    supports for individuals living with mental health conditions.
               high cost of mental illness in america in the u.s.
        Approximately one in five Americans live with a mental health
    condition--approximately 46.6 million people in 2017.\1\ Individuals
    who live with mental health conditions are our neighbors, family
    members, and friends. They contribute to all sectors of the U.S.
    economy--yet the social and economic costs associated with mental
    health conditions is devastating. In 2013, mental illness topped the
    list of the costliest conditions in the U.S. at $201 billion, according
    to a 2016 study.\2\ While this financial cost is an incredible burden
    on U.S. healthcare spending, the personal cost of untreated mental
    illness to individuals and families is much more devastating. At NAMI
    we hear from countless individuals who share their own stories of a
    family member or friend who couldn't reach their full potential because
    of a lack of necessary, innovative treatment. Some also carry the
    burden of someone lost to suicide. In fact, 47,173 Americans die by
    suicide annually, and it's currently the tenth leading cause of death
    in the United States.\3\ Additionally, suicide and self-injury cost the
    U.S. $69 billion in 2015 alone.\4\ As you can see, the work of this
    Subcommittee and your commitment to adequate investment in innovative
    mental health research, and first-class treatments and supports is
    vitally important to keep America strong and save American lives.
    ---------------------------------------------------------------------------
        \1\ Gordon, J. (2018, May 15). National Institute of Mental Health.
    Prevalence of Mental Illness. Retrieved from: https://www.nimh.nih.gov/
    health/statistics/mental-illness.shtml. Date: 3 April 2019.
        \2\ Roehrig, C. Mental Disorders Top The List of The Most Costly
    Conditions in The United States: $201 Billion, Health Affairs, 2016.
    DOI:10.1377/hlthaff.2015.1659
        \3\ Suicide Statistics. American Foundation for Suicide Prevention.
    Retrieved from: https://afsp.org/about-suicide/suicide-statistics/.
    Date: 2 April 2019.
        \4\ Ibid.
    ---------------------------------------------------------------------------
                 fiscal year 2020 labor-hhs appropriations bill
        NAMI would like to thank the Chairman, Ranking Member, and
    Subcommittee for the bipartisan effort on the fiscal year 2020 enacted
    bill, and the critical investments that were made for mental health
    research and treatment. We are especially grateful for the $2.6 billion
    budget increase for the National Institutes of Health (NIH), and the
    $98 million increase for the National Institute of Mental Health
    (NIMH). NAMI is also very appreciative of the additional $200 million
    for the ongoing Certified Community Behavioral Health Clinics (CCBHCs).
    nami fiscal year 2021 funding priorities for the national institute of
                                 mental health
        NAMI endorses the goal of at least $44.7 billion for the National
    Institutes of Health (NIH), a $3 billion increase in base funding for
    the agency. Additionally, NAMI supports the current NIMH strategic plan
    and its high-level strategic objectives.
    Advancing Services and Intervention Research & Investing in Early
            Psychosis Prediction and Prevention (EP3)
        Approximately 100,000 young Americans experience a first episode of
    psychosis (FEP) each year.\5\ Intervening early is critical to altering
    the downward trajectory associated with psychosis. Accordingly, NAMI
    prioritized support for the NIMH Recovery After an Initial
    Schizophrenia Episode (RAISE) Project, which developed Coordinated
    Specialty Care (CSC) programs that are helping people experience
    recovery. We urge further investment into maintaining CSC's positive
    treatment and quality-of-life outcomes over the long-term. NAMI also
    supports NIMH's Early Psychosis Prediction and Prevention (EP3)
    initiative, which shows promise in detecting risk for psychotic
    disorders and reducing the duration of untreated psychosis in
    adolescents who have experienced early psychosis.
    ---------------------------------------------------------------------------
        \5\ Fact Sheet: First Episode Psychosis. National Institutes of
    Mental Health. Retrieved from: https://www.nimh.nih.gov/health/topics/
    schizophrenia/raise/fact-sheet-first-episode-psychosis.
    shtml. Date: 21 May 2020.
    ---------------------------------------------------------------------------
    Advancing Precision Medicine
        NAMI remains supportive of the NIMH Research Domain Criteria (RDoC)
    and its efforts to build a classification system based on underlying
    biological and behavioral mechanisms, rather than on symptoms. Through
    continued development, we believe RDoC will provide the precision
    currently lacking in traditional diagnostic approaches to mental health
    conditions.
          nami fiscal year 2021 funding priorities for samhsa programs
        NAMI supports programs at the Center for Mental Health Services
    (CMHS) at SAMHSA that are focused on replication and expansion of
    effective, evidence-based interventions to serve children and adults
    living with mental health conditions. We are grateful for increases in
    recent years for the Community Mental Health Services Block Grant
    (MHBG) to its current level of $722.6 million.
        Additionally, NAMI strongly supports the 10 percent set-aside in
    the MHBG for evidence-based programs that address the needs of
    individuals with early serious mental illness. As noted above, NAMI
    endorses the Coordinated Specialty Care (CSC) model for collaborative,
    recovery-oriented care. This evidence-based approach emphasizes shared
    decisionmaking and should be the priority program for receiving funding
    from this set-aside.
    Request for Consideration of additional Set-Aside for Crisis Care
            Services
        As the Subcommittee is aware, there is an increased need for mental
    health crisis care services to improve our nation's mental health and
    combat the suicide and opioid epidemics. As such, NAMI supports a
    funding increase for an additional $35 million to the MHBG to fully
    fund a 5 percent set-aside for Crisis Care Services--as was included in
    the House Labor-HHS Subcommittee's fiscal year 2020 bill. If funded, we
    request the array of crisis care services to include centrally deployed
    24/7 mobile crisis units, short-term residential crisis stabilization
    programs, the implementation of evidence-based protocols for treating
    individuals at risk of suicide, and regional or statewide crisis call
    centers coordinating in real time.
    Additional NAMI Fiscal Year 2021 Funding Priorities at CMHS
        We support continued funding for all current programs at CMHS,
    including $125 million for Children's Mental Health Services, $6.3
    million for Criminal and Juvenile Justice Programs, $102 million for
    Project AWARE state grants, $64.6 million for the Projects for
    Assistance in Transition from Homelessness (PATH) program, $36.4
    million for the Treatment Systems for Homeless portfolio, and $19
    million for the continuation of the Assisted Outpatient Treatment (AOT)
    pilot program and $7 million for the Assertive Community Treatment
    (ACT) program. NAMI respectfully requests the Subcommittee consider a
    $68 million increase to the National Suicide Prevention Lifeline, for a
    total of $80 million and fully fund all Garrett Lee Smith (GLS) suicide
    prevention grants consistent with fiscal year 2020, enacted.
    Additionally, NAMI remains concerned about the proposed elimination of
    the Primary and Behavioral Health Care Integration (PBHCI) program in
    the fiscal year 2021 President's Budget (PB) Request. The PBHCI is a
    critical program which supports collaboration and infrastructure that
    increases primary and wellness care for children and adults with
    serious mental health conditions, and we strongly encourage the
    restoration of funding at $51.9 million.
    Health Resources and Services Administration (HRSA)
        NAMI recognizes the important work of HRSA, and therefore requests
    $36.9 million for Mental and Behavioral Health, $102 million for the
    Behavioral Health Workforce, and $10 million for Increasing Access to
    Pediatric Mental Health Care--all level to fiscal year 2020, enacted
    funding. These programs are crucial to supporting development of the
    mental health workforce.
    Fully Funding the 21st Century Cures Act
        The Helping Families in Mental Health Crisis Act as included in the
    21st Century Cures Act, Public Law 114-255, was a landmark piece of
    legislation and represented a substantial leap forward for Americans
    who live with mental illness. NAMI respectfully asks the Subcommittee
    to fully fund all programs authorized including $6 million for Adult
    Suicide Prevention programs and $2.5 million for Strengthening
    Community Crisis Response Systems. These programs, if funded, will
    ensure that we can capitalize on the advancements put forth in this
    bill, and help more Americans living with mental health conditions to
    realize that recovery is possible.
                                   conclusion
        NAMI would like to express our gratitude to the Chairman, Ranking
    Member and the Subcommittee for your investments in the necessary
    research, treatments, services and supports for Americans living with
    mental health conditions.
                                     ______

         Prepared Statement of the National Alopecia Areata Foundation
     the foundation's fiscal year 2021 l-hhs appropriations recommendations
    _______________________________________________________________________

      --At least $44.7 billion for the National Institutes of Health (NIH).
        --Proportional funding increases for National Institute of
                Arthritis and Musculoskeletal and Skin Diseases (NIAMS),
                National Institute of Allergy and Infectious Diseases
                (NIAID) and the National Center for Advancing Translational
                Science (NCATS).
    _______________________________________________________________________

        Chairman Blunt and distinguished members of the Subcommittee, thank
    you for your time and your consideration of the priorities of the
    alopecia areata community as you work to craft the fiscal year 2021 L-
    HHS Appropriations Bill.
                             about alopecia areata
        Alopecia areata is a prevalent autoimmune skin disease resulting in
    the loss of hair on the scalp and elsewhere on the body. It usually
    starts with one or more small, round, smooth patches on the scalp and
    can progress to total scalp hair loss (alopecia totalis) or complete
    body hair loss (alopecia universalis).
        Alopecia areata affects approximately 2.1 percent of the
    population, including more than 6.5 million people in the United States
    alone. The disease disproportionately strikes children and onset often
    occurs at an early age. This common skin disease is highly
    unpredictable and cyclical. Hair can grow back in or fall out again at
    any time, and the disease course is different for each person. In
    recent years, scientific advancements have been made, but there remains
    no cure or indicated treatment options.
        The true impact of alopecia areata is more easily understood
    anecdotally than empirically. Affected individuals often experience
    significant psychological and social challenges in addition to the
    biological impact of the disease. Depression, anxiety, and suicidal
    ideation are health issues that can accompany alopecia areata. The
    knowledge that medical interventions are extremely limited and of minor
    effectiveness in this area further exacerbates the emotional stresses
    patients typically experience.
                              about the foundation
        NAAF, headquartered in San Rafael, California, supports research to
    find a cure or acceptable treatment for alopecia areata, supports those
    with the disease, and educates the public about alopecia areata. NAAF
    is governed by a volunteer Board of Directors and a prestigious
    Scientific Advisory Council. Founded in 1981, NAAF is widely regarded
    as the largest, most influential, and most representative foundation
    associated with alopecia areata. NAAF is connected to patients through
    local support groups and also holds an important, well-attended annual
    conference that reaches many children and families.
        NAAF initiated the Alopecia Areata Treatment Development Program
    (TDP) dedicated to advancing research and identifying innovative
    treatment options. TDP builds on advances in immunological and genetic
    research and is making use of the Alopecia Areata Clinical Trials
    Registry which was established in 2000 with funding support from the
    National Institute of Arthritis and Musculoskeletal and Skin Diseases;
    NAAF took over financial and administrative responsibility for the
    Registry in 2012 and continues to add patients to it. NAAF is engaging
    scientists in active review of both basic and applied science in a
    variety of ways, including the November 2012 Alopecia Areata Research
    Summit featuring presentations from the Food and Drug Administration
    (FDA) and NIAMS.
        NAAF is also supporting legislation to provide coverage for cranial
    prosthetics under Medicare. This bill will grant increased access to
    cranial prosthetics and therapies for patients with alopecia areata and
    other forms of medical hair loss. Many patients living with medical
    hair loss suffer from a variety of diseases, including cancer. With no
    known cause or cure, alopecia areata is an autoimmune skin disease
    affecting approximately 6.8 million Americans, many of whom are
    children.
                         national institutes of health
        NIH hosts a modest alopecia areata research portfolio, and the
    Foundation works closely with NIH to advance critical activities. NIH
    projects, in coordination with the Foundation, have the potential to
    identify biomarkers and develop therapeutic targets. In fact,
    researchers at Columbia University Medical Center (CUMC) have
    identified the immune cells responsible for destroying hair follicles
    in people with alopecia areata and have tested an FDA-approved drug
    that eliminated these immune cells and restored hair growth in a small
    number of patients. This huge breakthrough has led to NIAMS providing a
    research grant to the researchers at Columbia to continue this work. In
    this regard, please provide NIH with meaningful funding increases to
    facilitate growth in the alopecia areata research portfolio.
                              patient perspective
        Rosie's mother explains their family's experience with alopecia
    areata:

        ``As we struggled to understand the diagnosis of alopecia areata
            and what it might mean for our two-and-a-half-year-old daughter
            Rosie, the last of her remaining hair fell out. In the
            meantime, we sought answers from books, from second (and third)
            opinions, and genetic testing. We read medical journal
            articles, sometimes in the middle of the night when we were up
            with Rosie's little sister, looking for signs of hope that a
            cure was just around the corner. We scoured the Internet for
            miracles and success stories, for the magic bullet that would
            return those soft brown curls back to Rosie's smiling face. We
            tried countless treatments; ointments, creams, steroids, herbal
            medicines, special diets, and even lifestyle changes designed
            to reduce any stress a three-year-old might feel. We searched
            Rosie's scalp daily, sometimes with a flashlight, for any sign
            of new hair growth. Our hope that this would be a temporary
            condition, even a funny story someday, slowly faded. The next
            few months were filled with ups and downs. Sympathetic smiles
            were far rarer than stares, and the stares were often paired
            with inquisitive finger-pointing from younger children. Parents
            would shush their children, 'Shhh--don't stare. Stop pointing.
            It's not polite,' while we just kept right on grocery shopping
            or waiting in line at Starbucks. When Rosie asked why they were
            pointing, we'd explain they were simply curious, all the while
            whisking her away from the pointers with a pit in our stomach.
        One particular type of public comment bothered Rosie more than any
            other; `Hey little guy, how are you today?' or, `Great
            scootering, buddy!' She'd frown and tell people she wasn't a
            boy, and usually she'd be too annoyed to explain further. She
            began to ask, `Why do they think I'm a boy, I'm wearing pink?
            Boys don't wear pink!' Of all the answers we'd had to provide,
            this one was the toughest. By the end of the discussion, we
            found ourselves explaining to our teary-eyed Rosie that
            sometimes things happen to us that we can't control. So,
            instead of focusing on fixing her baldness, we shifted to
            raising a little girl who loves herself unconditionally, hair
            or no hair.''
        Thank you for the opportunity to testify before you today. NAAF
    looks forward to working with you all to advance medical research and
    public health activities that will improve patient outcomes for the
    members of our community suffering from alopecia.

        [This statement was submitted by Dory Kranz, Chief Executive
    Officer, National Alopecia Areata Foundation.]
                                     ______

      Prepared Statement of the National Association for State Community
                               Services Programs
        As Executive Director of the National Association for State
    Community Services Programs (NASCSP), I am pleased to submit testimony
    in support of the Department of Health and Human Services' (HHS)
    Community Services Block Grant (CSBG). We are seeking a fiscal year
    2021 appropriation level of $775 million for CSBG. NASCSP believes that
    this funding level will ensure that states and local communities have
    the resources they need to lead the fight against poverty through
    innovative, effective, and locally tailored anti-poverty programs that
    help communities, individuals, and families achieve economic security.
        NASCSP is the member organization representing the State CSBG
    Directors in all 50 states, Washington D.C., and 5 U.S. territories on
    issues related to CSBG and economic opportunity. NASCSP also provides
    training and technical assistance to help State Offices implement
    program management best practices and develop evidence-based policy.
    The State Offices represented by our organization would like to thank
    the members of this committee for their support of CSBG over the years,
    particularly for the increase to CSBG in the fiscal year 2020 Labor-HHS
    Bill and for recognizing the role of CSBG in response to the COVID-19
    pandemic through supplemental funding provided by the CARES Act.
        CSBG is a model example of a successful Federal-State-Local
    partnership, a fact I can personally attest to having worked for over
    20 years in various roles within the CSBG network. However, CSBG is
    arguably one of the most misunderstood programs within the Federal
    Government. This is evident in the Administration's justification for
    eliminating CSBG in its budget. The administration claims that ``CSBG
    funding is poorly targeted and not allocated based on performance.''
    They also claim that ``CSBG also funds some services that are
    duplicative of those supported by other Federal programs.'' My
    testimony will illustrate that this could not be further from the
    truth. I would like to highlight three main points in my testimony:

          1. The structure of CSBG empowers states and local communities to
            take the lead on reducing poverty, giving states wide
            discretion to target and tailor funding as they see fit for
            their unique conditions.
          2. The robust local, state, and Federal accountability measures
            of the CSBG Performance Management Framework are unique and
            bold compared to other Federal programs, preventing duplication
            and fostering continuous improvement.
          3. CSBG creates impact in communities across the country by
            leveraging additional private, local, state, and Federal
            investments to fight poverty, serving as the thread that weaves
            together and coordinates both private and public antipoverty
            efforts.
                                   structure
        Critics of Federal anti-poverty programs emphasize the need for
    state and local leadership to address poverty, asserting that state and
    local leaders are best equipped to tackle the challenges facing their
    communities. CSBG embodies this very principle. CSBG is a block grant
    administered and managed by states, which distribute funds to a
    nationwide network of over 1,000 local CSBG Eligible Entities, also
    known as Community Action Agencies or CAAs. The CSBG network serves
    every corner of America, touching urban, rural, and suburban
    communities. In some rural counties, the CAA is the only human services
    organization working to promote economic security in that community.
        Community Action Agencies utilize CSBG funds to address specific
    local needs, which may include services and programs that address one
    or more of the core domains in which we work: employment, education and
    cognitive development, income, infrastructure and asset building,
    housing, health and social behavioral development, and civic engagement
    and community involvement. The CSBG Act also requires that the work of
    Community Action Agencies must be shaped by a community needs
    assessment performed at least every 3 years. This process ensures that
    CAA programs and services are evidence based and tailored to unique
    community needs, rather than a one-size-fits-all solution. The needs
    assessment prevents duplication and incorporates community feedback in
    the strategic planning process. Furthermore, the CSBG Act requires at
    least one-third of a Community Action Agency's board to be composed of
    people with low-incomes or their representatives, ensuring that local
    needs are accurately reflected in the priorities of the organization.
        In addition to low-income representation, the CSBG Act also
    requires Community Action boards be comprised of local elected
    officials or their representatives and community stakeholders which
    include local businesses, other helping organizations, professional
    groups, or community organizations. This unique tripartite structure
    assures that the Community Action Agency not only properly identifies
    the needs of a community, but also identifies the available resources
    and opportunities that can be leveraged to maximize outcomes and
    impact. The tripartite structure of Community Action boards calls on
    all sectors of society to join in the fight against poverty.
                                 accountability
        In addition to a structure that empowers states and local
    communities, CSBG is bolstered by a Performance Management Framework to
    ensure accountability at all levels of the network. This federally
    established Performance Management Framework includes state and Federal
    accountability measures, organizational standards for Community Action
    Agencies, and a Results Oriented Management and Accountability (ROMA)
    system. Under the Performance Management Framework, the CSBG Network
    reports outcomes through the CSBG Annual Report. Within this reporting
    mechanism, National Performance Indicators are used across the network
    to track and manage progress, ensuring CAAs have the data they need to
    improve and innovate. The ROMA system allows local communities to
    strengthen their impact and achieve robust results through continuous
    learning, improvement, and innovation. Furthermore, CSBG State Offices
    monitor local agency performance and adherence to organizational
    standards, providing training and technical assistance to ensure high
    quality delivery of programs and services.
                                     impact
        CSBG is a sound Federal investment that produces tangible results.
    Federal CSBG dollars are used to support and strengthen the anti-
    poverty infrastructure of our communities. In fiscal year 2017,\1\ for
    every $1 of CSBG, CAAs leveraged $7.36 from non-Federal sources. This
    leveraging of funds allowed CAAs to expand and maintain highly
    successful programs. Including all Federal sources, non-Federal
    sources, and volunteer hours valued at the Federal minimum wage, the
    CSBG Network leveraged $20.22 of non-CSBG dollars per $1 of CSBG.
    Without CSBG, many rural communities across America would not be able
    to implement critical programs that address poverty at both the
    community and family levels. Terminating CSBG would be detrimental to
    the lives of the over 15.3 million people with low-incomes who the CSBG
    network served in fiscal year 2017. Here is just a snapshot of the
    impact of CSBG:
    ---------------------------------------------------------------------------
        \1\ Fiscal year 2017 data is the latest publicly available from the
    Office of Community Services (OCS) within the Department of Health and
    Human Services (HHS).

      --173,775 unemployed, low-income people obtained a job as a result of
            Community Action.
      --52,220 low-income people with jobs obtained an increase in income
            and/or benefits.
      --38,947 low-income people achieved ``living wage'' employment and/or
            benefits.
      --425,445 low-income participants obtained healthcare services for
            themselves or a family member.
      --360,909 low-income families in CAA tax preparation programs
            qualified for a Federal or state tax credit. (The expected
            total amount of tax credits was $459,277,981).
      --134,109 low-income people completed Adult Basic Education (ABE) or
            General Educational Development (GED) coursework and received a
            certificate or diploma.
        Looking beyond the data, we can see that the CSBG Network is
    delivering innovative, comprehensive, and effective programs across the
    country that put individuals and families on a path out of poverty:

      --Nationwide Pandemic Response and Recovery: As the COVID-19 crisis
            has swept across America, Community Action Agencies are trusted
            local partners implementing programs that provide support and
            stability in these unprecedented times. CAAs have adapted
            processes and procedures to continue operating and expand
            programs such as emergency food distribution, energy
            assistance, housing support, and other efforts in response to
            the immediate impacts of the pandemic. Many CAAs have also
            utilized technology to innovate and continue to provide Head
            Start early childhood education and home visits virtually. INCA
            Community Services in Oklahoma has delivered over 430 care
            packages to seniors and other homebound individuals, providing
            not only physical necessities, but also emotional support. The
            CSBG network has also been recognized by Governors across the
            nation as a critical partner in the recovery ahead. In
            Kentucky, the state's Community Action Agencies have been
            called on by the Governor to help direct and distribute the
            Team Kentucky Fund. In Georgia, Community Action Agency leaders
            have been tapped to serve on the Governor's community outreach
            task force.
      --Two Generation Housing Solutions in Washington: The Second Chance
            Center (SCC) Rapid Engagement and Empowerment Project is an
            initiative of the Benton-Franklin Community Action Committee.
            The SCC is targeted to meet the needs of families with children
            who are experiencing homelessness as well as those at-risk of
            homelessness. The target populations and goals are two-fold;
            first, to reduce the recidivism rate of families with children,
            returning to homelessness, living doubled-up, or in imminent
            danger of becoming homeless, and second to provide a safe
            family-oriented day shelter with services to educate,
            encourage, and assist in this process that works to promote
            self-sufficiency, including job search skills, Life Skills, and
            financial literacy. The initiative is on track to serve 120
            people in its first year, helping families achieve greater
            self-determination and self-sufficiency through solutions for
            both children and parents.
      --Economic Self-Sufficiency & Bundled Services in Mississippi:
            Washington, Warren, Issaquena, Sharkey Community Action Agency
            (WWISCAA) operates a comprehensive case management program to
            help members of the community reach their full potential. The
            main pillars of the program include: (1) Assistance with job
            placement, employability skills training and soft skill such as
            resume writing; (2) GED placements, work skill training and
            vocational skills training for young adults; (3) intern
            placement and job shadowing for low-income men of color; and
            (4) Coordinated referrals for economic assistance and
            healthcare from the county department of human services. The
            outcome indicators used to measure success were the number of
            jobs gained and maintained for 90 days, the number of GEDs
            obtained, completion of vocational skills training programs,
            attainment of Career Readiness Certifications, attainment of
            professional licenses, and increase in the number of youth
            attending post-secondary education. Results included over 2,600
            measurable outcomes across employment, education, and income
            management.
        In closing, we ask the committee to fund CSBG at no less than $775
    million for fiscal year 2021, the funding level necessary to grow and
    sustain this nationwide network with an over 50-year record of success.
    The structure of CSBG empowers states and local communities to take the
    lead on reducing poverty, while prioritizing locally determined
    solutions. CSBG is subject to the extensive accountability mechanisms
    of the Performance Management Framework, ensuring effective and
    responsible stewardship of funds at the Federal, State, and local
    level. CSBG is producing concrete results, serving millions of
    vulnerable Americans each year and implementing strategies that move
    communities, individuals, and families toward economic security and
    independence. Additionally, in the months ahead, the need for CSBG
    programs and services will only increase due to the impact of COVID-19.
    Community Action Agencies have a robust record of success helping
    Americans to get back to work. In addition to helping hundreds of
    thousands of Americans obtain employment every year, the CSBG network
    played a critical role in the economic recovery from the last recession
    10 years ago.
        NASCSP looks forward to working with Committee members to ensure
    that CSBG continues to help families achieve outcomes that strengthen
    our communities and make a difference in the lives of our most
    vulnerable neighbors. Thank you.
        Respectfully submitted.

        [This statement was submitted by Jenae Bjelland, Executive
    Director, National Association for State Community Services Programs.]
                                     ______

         Prepared Statement of the National Association of Councils on
                           Developmental Disabilities
        Chairman Blunt, Ranking Member Murray and members of the committee,
    the National Association of Councils on Developmental Disabilities
    (NACDD), a national membership organization for the State Councils on
    Developmental Disabilities (DD Councils), appreciates the opportunity
    to present this testimony. NACDD respectfully requests that Congress
    appropriate $80 million for the DD Councils within the Administration
    for Community Living (ACL) in the Labor-HHS-Education appropriations
    bill for fiscal year 2021 and clarify in report language that not less
    than $700,000 of that amount be provided for technical assistance and
    training for the DD Councils.
        Authorized by the bipartisan Developmental Disabilities Assistance
    and Bill of Rights Act (DD Act), DD Councils work collaboratively with
    the University Centers for Excellence in Developmental Disabilities
    (UCEDDs) and Protection and Advocacy program for Developmental
    Disabilities (P&As), to ``assure that individuals with developmental
    disabilities and their families participate in the design of and have
    access to needed community services, individualized supports, and other
    forms of assistance that promote self-determination, independence,
    productivity, and integration and inclusion in all facets of community
    life, through culturally competent programs.'' \1\ The DD Act design
    threads these three distinctly different programs together to ensure a
    well-trained cadre of experts provide services to individuals with DD
    and their families, protect the rights of individuals with DD, and
    ensure that people with DD are fully included in the work to improve
    services and systems to make them fully inclusive. Working within this
    Federal framework, the role of the DD Councils is to promote person-
    centered and family-centered system improvements with and for people
    with developmental disabilities.
    ---------------------------------------------------------------------------
        \1\ 42 U.S.C. 15001(b).
    ---------------------------------------------------------------------------
        For the past fifty years, Congress has recognized that DD Councils
    are in a strategic position in each state and territory to invest in
    dynamic and innovative programs that improve services and systems that
    help people with developmental disabilities live in the community.
    Appointed by Governors and comprised of at least 60 percent people with
    DD and their families, DD Councils assess problems or gaps in the
    system and design solutions. Innovative solutions from the DD Councils
    often bring about public-private partnerships that make real changes to
    systems such as employment, transportation, education, healthcare,
    housing and more.
        This year, DD Councils were quick to respond to the COVID-19
    pandemic to advise governors and state agencies and fill gaps in
    emergency services for people with I/DD and families. Expert council
    staff and trusted local organizations provided concrete resources to
    respond to emerging needs of individuals with developmental
    disabilities and their families who have been impacted by the COVID-19
    pandemic. For example, one of the thirty-three projects by the Illinois
    DD Council supported direct care staff to be able to continue their
    work under these unusual circumstances to provide the supports needed
    for the people they serve. The Missouri DD Council established a COVID-
    19 Scholarship Fund, which will provide opportunities for individuals
    and/or family members to apply for one-time funding to use technology
    as a way to address today's unique barriers to community living (e.g.
    accessing telehealth and other supports during quarantine). The
    Washington State DD Council's Informing Families Project worked with
    self-advocates to create and disseminate accessible information about
    the pandemic to people with I/DD in accessible formats (e.g. ``plain
    language'') that has been downloaded by hundreds of people and shared
    across the country.
        This fiscal year 2021 funding request reflects the need for DD
    Councils to direct resources through partnerships with local non-
    profits, businesses and state and local governments, to address
    obstacles to community living for people with DD that they encounter
    every day as well as those that emerge unexpectedly during disaster and
    public health emergencies, such as the recent pandemic. Community
    living provides opportunities for children and adults with DD to live
    their life to the fullest extent possible. People with DD are living
    longer and contributing to the social and economic growth of our
    country at historic levels. States and territories rely on DD Councils
    to turn fragmented approaches into innovative and cost-effective
    strategies to increase the percentage of individuals with DD who become
    independent, self-sufficient and integrated into the community. DD
    Council programs and funding helps people with DD realize competitive
    and integrated employment, access to qualified direct support workers,
    successfully transition to independent living, access affordable
    housing, build leadership and advocacy skills, and more. DD Council
    members also provide a critical and unique role in educating state and
    local policymakers by directly participating in the design of state and
    local government-funded supports and services affecting their lives.
        DD Councils promote community living in the states through narrowly
    tailored, state-specific initiatives. For example, even though persons
    with developmental disabilities want to go to work and continue to be
    contributing members to the workforce, national statistics indicate
    that persons with developmental disabilities experience significantly
    higher unemployment rates than their peers without disabilities. To
    address this disparity, the Missouri DD Council invested funds for
    people with I/DD to get and keep competitive jobs in integrated work
    settings, improve transportation options and create homeownership
    opportunities. The ``Show-Me-Careers'' project scaled up evidence-based
    practices in eight pilot communities using approaches developed with
    their local community in mind, including skill-building of youth,
    career planning, and development of partnerships with the local
    business community. The DD Council also partnered with three Regional
    Planning Commissions and leveraged funding with the Missouri Department
    of Transportation (MODOT) to launch MO-RIDES, a referral service that
    connects riders to transportation providers. MO-RIDES works with
    existing transportation providers to find affordable, accessible and
    flexible transportation for people with DD who need a ride to work,
    appointments or shopping, thus improving their quality of life, by
    giving them greater access to their community. Finally, recognizing
    that people with disabilities, including people with intellectual and
    developmental disabilities (I/DD) face a severe housing crisis, the
    Missouri DD Council supported the Home of Your Own (HOYO) project for
    low-income (below 50 percent median) people with significant
    disabilities. The HOYO program has helped over 30 Missourians with
    developmental disabilities obtain homes throughout the state and
    continues beyond the grant period as Missouri Inclusive Housing
    Development Corporation (MoHousing).
        Another example of local solutions stemming from DD Council efforts
    comes from Washington. The popular understanding of Autism spectrum
    disorder focuses primarily on children and the importance of early
    detection and intervention. However, Autism is a lifelong condition and
    supports and treatments change as people grow older. The Washington
    State DD Council is leading a five-year Community of Practice to
    explore different ways of supporting families with individuals with
    Autism across his or her lifespan. Some of their work includes
    developing strategies to address the needs of aging caregivers,
    establishing an adult sibling support network, educating parents with
    intellectual and developmental disabilities about parenting support
    services, and more.
        The Georgia DD Council is another great example of Councils
    applying state-based solutions to obstacles to community living.
    Individuals with disabilities should have the opportunity to live full,
    self-determined lives in the community. That is why the Georgia Council
    on DD is the lead supporter of the UNLOCK! Coalition. UNLOCK! works to
    rebalance the state system of long-term services and supports, so that
    fewer dollars are spent on institutional care and more dollars are
    invested into home and community-based supports. Because of UNLOCK!,
    self-advocates, their families, providers, and other allies
    successfully advocated to bring additional resources for long term
    supports and services for people with disabilities to their state.
        The 56 DD Councils require continuous support in order meet the
    requirements of the DD Act. The DD Act provides funding for technical
    assistance to DD Councils on how to implement the DD Act.\2\ Previously
    funded through Projects of National Significance within the
    Administration for Community Living, starting in fiscal year 2018,
    Congress authorized the same technical assistance within the
    appropriation for DD Councils. Unlike previous years, the fiscal year
    2018 and fiscal year 2019 legislation did not contain report language
    to protect technical assistance funding at levels that reflect the need
    for these services. Unfortunately, for both fiscal year 2018 and 2019,
    the Secretary of Health and Human Services reduced funding both through
    a departmental transfer as well as for other administrative needs in
    the department. For that reason, NACDD respectfully requests that the
    committee include report language reflecting minimum levels of funding
    of not less than $700,000 for technical assistance and training.
    ---------------------------------------------------------------------------
        \2\ The Information and Technical Assistance for Councils on
    Developmental Disabilities is a federally funded technical assistance
    project authorized by Section 129(b) of PL 106-402.
    ---------------------------------------------------------------------------
        Please contact Erin Prangley, NACDD Director, Policy, at
    eprangley@nacdd.org if you require additional information. Thank you
    for consideration of this request.
                                     ______

         Prepared Statement of the National Association of County and
                             City Health Officials
        The National Association of County and City Health Officials
    (NACCHO) is the voice of the nearly 3,000 local health departments-
    including city, county, metropolitan, district, and tribal agencies-
    across the country. As we are currently seeing with our nation-wide
    response to the novel coronavirus (COVID-19), local health departments
    are on the front lines of the response to any public health crisis.
    However, years of underfunding have left them without the workforce and
    funding to respond most effectively to this and other challenges.
    Therefore, NACCHO requests that Congress include in its fiscal year
    2021 spending bill at least $200 million to establish a public health
    workforce loan repayment program at the Health Resources and Services
    Administration (HRSA), as well as $8.3 billion in overall funding for
    the Centers for Disease Control and Prevention.
        Local health departments prepare and respond to all types of public
    health emergencies. In recent weeks and months, public health
    professionals in these departments have rapidly mobilized to serve on
    the front lines of the COVID-19 crisis. The nation is seeing the
    troubling result of years of funding cuts and stagnation. Today, our
    system is under intense stress with frontline public health workers
    diverting their attention to the COVID-19 response while trying to
    continue the ever-important daily work of defending against chronic and
    long-term disability and disease, keeping our food and water safe, and
    addressing persistent challenges like substance misuse-problems that do
    not disappear simply because a greater threat is present. The lack of
    investment in the public health workforce and infrastructure is
    exacerbated in local health departments that serve smaller populations
    with smaller staffs who may not even have the workforce to remove from
    regular duties to help coordinate the outbreak response in their
    communities. Now is the time to better fund our public health
    infrastructure, including our workforce.
                            public health workforce
        NACCHO is requesting a $200 million appropriation to establish a
    public health loan repayment program at HRSA. This program--modeled off
    the success of the National Health Service Corps in bringing healthcare
    providers to communities in need--will help health departments across
    the country recruit and retain staff who can tackle 21st Century
    challenges and increase health departments' capacity to keep the public
    healthy and safe.
        Governmental public health was hit hard by the Great Recession, and
    while much of the rest of the public sector workforce has recovered or
    grown, local and state health departments have not. In fact, local and
    state health departments have lost nearly a quarter of their workforce
    since 2008, shedding over 50,000 jobs across the country. A first step
    to address the public health workforce shortage is enacting and
    implementing a loan repayment program for public health professionals
    who agree to serve 2 years in a local, state, or tribal health
    department, in order to help recruit and retain trained staff. New
    staff and volunteers are being brought into the field for the COVID-19
    response. This program would provide an incentive to keep them long
    term and help ensure that their experience is harnessed and available
    before the next crisis hits. The COVID-19 emergency has shown the holes
    in the public health infrastructure and the lack of surge capacity for
    responding to an emergency at the same time as meeting other public
    health needs. Structural investments are needed to be better prepared
    before the next outbreak.
                   centers for disease control and prevention
        NACCHO appreciates the increase in funding for the Centers for
    Disease Control and Prevention (CDC) in fiscal year 2020 and urges the
    subcommittee to support a top line of at least $8.3 billion for CDC in
    fiscal year 2021. This is in line with the 2222 campaign, to raise the
    CDC's budget 22 percent by 2022, which was started in 2019 with support
    from NACCHO. The need for core support for CDC is much greater than
    this; however, this funding request takes into account limitations due
    to budget caps.
        In addition to rebuilding the workforce, investment in the CDC is
    critical for local health departments to successfully implement
    programs which keep our communities healthy and prepared to respond to
    the ever-growing list of public health emergencies such as the current
    COVID-19 outbreak. The CDC plays an important role in support of local
    health departments in many ways, including: supporting local health
    departments' ability to detect and respond to infectious disease and
    outbreaks through national surveillance systems and alerts, providing
    important subject matter expertise in the event of an outbreak of an
    emerging infectious disease, providing logistics, communication,
    analytics and other support functions during an emergency response.
    Congress should support CDC as an agency and the individual programs
    that it funds.
        A few cities and counties receive funding directly from CDC;
    however, much of CDC's funding for local health departments goes
    through state health departments as the primary grantee. It is
    critically important that the necessary amount of Federal funds is
    allocated to local health departments who merge public health expertise
    with thorough understanding of local conditions to keep all communities
    healthy and safe. In addition, we ask the committee to ask CDC for
    greater visibility as to how much funding provided to state health
    departments reaches local communities through subgrants.
        While emergency funds have been authorized to help respond to the
    COVID-19 emergency, public health departments need predictable, robust
    support to address health needs across the spectrum of infectious
    disease, chronic disease and emergency preparedness. Whether the
    department is responding to a measles outbreak, trying to solve their
    community's substance abuse crisis, or investigating vaping related
    illnesses, these funds go towards life-saving planning and response
    efforts in each Senator's state.
        The response to COVID-19 shows that robust Federal investment in
    public health is needed to help people be safe and healthy. Thank you
    for your attention to these recommendations to strengthen public
    health.

        [This statement was submitted by Lori Tremmel Freeman, MBA, Chief
    Executive Officer, National Association of County and City Health
    Officials.]
                                     ______

               Prepared Statement of the National Association of
                            Drug Court Professionals
        Chairman Blunt, Ranking Member Murray, and distinguished members of
    the subcommittee, I am honored to have the opportunity to submit my
    testimony on behalf of this nation's more than 4,000 drug treatment
    courts and the 150,000 people they will connect to lifesaving addiction
    and mental health treatment this year. Given the unprecedented success
    of drug treatment courts and the growing need in communities around the
    country for solutions to the addiction epidemic, I am requesting
    Congress maintain level funding of $70 million for the fiscal year 2021
    Drug Treatment Court Program at the Department of Health and Human
    Services, Substance Abuse and Mental Health Services Administration
    (SAMHSA).
        In 2011, I graduated from the Stone County DWI Court in Stone
    County, Missouri. After my eighth DWI arrest, I was looking at 7 years
    in prison but was offered DWI court instead. The Stone County DWI court
    provided me with the treatment, structure, accountability, and social
    skills I needed to find my path to recovery. Today, I am a substance
    use disorder counselor and part of the same DWI court team that helped
    me achieve recovery. I am also the founder and director of Peeps in
    Recovery and the first alumnus on the Missouri Association of Treatment
    Court Professionals board of directors.
        I have first-hand knowledge of the importance of combining
    treatment with accountability. DWI courts and other treatment courts
    hold offenders accountable for their actions while connecting them with
    evidence-based drug treatment to address the underlying cause of the
    crime so it doesn't happen again. Stone County's drug treatment court
    program expanded to include models for adults, DWI offenders, and
    veterans. The work of all three is ending the cycle of individuals
    coming in and out of our justice system and committing crimes in
    service to their addiction or mental health disorder.
        Stone County receives funding from SAMHSA which allows our drug
    treatment court programs to expand capacity, offering more evidence-
    based treatment for more people in the justice system. SAMHSA dollars
    allow the drug treatment court programs to partner with Drury
    University in Springfield, Missouri for ongoing, independent
    evaluations of our program, giving us the statistics that show our
    Federal, state, and local funding is a positive investment in the
    future of our community.
        The Government Accountability Office finds drug treatment courts
    reduce crime by up to 58 percent. Further, in what is widely regarded
    as the most comprehensive study on drug treatment courts to date, the
    Department of Justice, National Institute of Justice Multi-Site Adult
    Drug Court Evaluation (MADCE) confirmed drug treatment courts
    significantly reduce both drug use and crime, and found cost savings
    averaging $6,000 for every individual served. The MADCE further found
    drug treatment courts improve education, employment, housing, and
    financial stability for nearly all participants. They are proven to
    promote family reunification, reduce foster care placements, and
    increase the rate of addicted mothers delivering babies who are born
    drug-free.
        But beyond these numbers, drug treatment courts are bringing hope
    to so many. I started drinking when I was 11 years old. I told myself
    that I would never act like my other family members when I was
    drinking. There would be no violence, no turmoil, no trauma, and no
    sickness. But learned behaviors have a way of repeating themselves when
    you do not know any other way, and I made the same mistakes as my
    family. My continuous drinking led to arrests, multiple jail sentences,
    and combined two-and-a-half years in prison.
        In 2010, I woke up handcuffed in a Stone County jail. I'd been
    arrested on my eighth DWI charge, just shy of my 40th birthday. At that
    moment, I conceded that, like my other family members before me, I
    would die from this disease. When they brought me into the courtroom,
    the judge called me by name and said something I'd never heard a judge
    say he was going to help me. For the first time, I left a courtroom
    with hope, something I'd longed to feel for years. After five days in
    medical detox, I spent thirty days in inpatient treatment before
    starting the DWI court program because I was that sick. My treatment
    also included intensive outpatient services and medication-assisted
    treatment.
        The Stone County DWI Court not only provided treatment services and
    accountability, they taught me the skills I needed to maintain
    meaningful, healthy relationships. The court provided family counseling
    for my adult son and me, showing us healthy ways to deal with anger and
    pain without alcohol. The program broke our cycle of generational
    addiction. I am proud my grandchildren have never seen me drink.
        I strongly urge this committee to recommend level funding of $70
    million to the Drug Treatment Court Program so people like me, and the
    1.5 million others served by drug treatment courts in the last 30
    years, continue to receive lifesaving treatment and accountability.
                                     ______

        Prepared Statement of the National Association of RSVP Directors
        The National Association of RSVP Directors (NARSVPD) appreciates
    the opportunity to submit testimony recommending an fiscal year 2021
    funding level of $63 million for the RSVP program, administered by the
    Corporation for National and Community Service (CNCS).
        This additional $12 million will help programs cope with the
    effects of the Coronavirus pandemic, bring successful programs to
    scale, enable more seniors live independently, support veterans and
    military families, and meet other local needs.
        Volunteer Match reports a nationwide need for 624,300 volunteers of
    whom 223,700 are specifically to aid communities affected by the
    Coronavirus. Many of these activities can be done by RSVP volunteers.
        RSVP deploys more than 200,000 volunteers in more than 600 programs
    to support the efforts of thousands of community organizations across
    the nation. It provides opportunities for people 55 and over to make a
    difference in their communities through volunteer service. It offers
    maximum flexibility and choice to its volunteers by matching the
    personal interests and skills of volunteers with opportunities to help
    solve community problems.
        The funds that we request will also help compensate for the loss of
    non-Federal revenues as sponsors have suffered financially. Programs'
    own fundraising events have been cancelled or delayed indefinitely.
        The pandemic has changed the landscape for RSVP. NARSVPD conducted
    a survey during the week of May 5-May 10. Most respondents report that
    no more than about 30 percent of their volunteers are serving at the
    present time, although it is clear that more volunteers could serve if
    CNCS provided additional funding and administrative relief that gave
    programs more flexibility.
        Our survey revealed that senior volunteers are playing an important
    role in combatting the pandemic and could do even more with increased
    support.
        Today, RSVP volunteers are doing grocery shopping, serving in food
    pantries and Meals on Wheels programs preparing and delivering food to
    those in need. They have instigated Pen Pal programs with school
    students, nursing home residents, veterans, and others. Volunteers are
    virtually tutoring and mentoring for students in need of reading
    assistance. They are helping low-income people with income tax
    preparation. They are planting community gardens. They are doing state
    health insurance counseling by phone. They are conducting telephone/
    Virtual Reassurance Programs. They are helping homebound individuals
    who have limited access to transportation. Finally, they are
    participating in phone banking and other emergency management
    activities and providing medical transportation with appropriate
    safeguards.
        Respondents to our survey believe that getting back to original
    numbers of volunteers will take time but is achievable if programs are
    able to develop sample plans that insure that volunteer stations are
    safe for volunteering; if they are able to put volunteers at ease by
    providing hand sanitizer, gloves, and masks; if they can receive funds
    for technology like Zoom to expand virtual volunteering; and, if CNCS
    allows for budget flexibility for new and different supplies.
        Among other ideas, programs would like the flexibility to recruit
    volunteers below the age of 55, develop volunteer opportunities during
    non-conventional hours, and expand virtual volunteer opportunities.
    They also seek funds and training to use social media as a recruitment
    tool.
        We contemplate a ``hybrid'' volunteer culture that combines
    traditional volunteering with new platforms and new technology and
    serving both physically and virtually. This new approach to serving
    will require funds for technologies that enable virtual volunteering
    and for training volunteers. Further, if staff needs to work remotely,
    it will need laptops to replace phones.
        It will also require flexibility at the program level to meet
    evolving local needs including changing outcome and performance
    measures to reflect new realities, providing safety measures for
    volunteers and offices, encouraging volunteer safety measures to
    reassure older volunteers, counseling for volunteers to address their
    concerns and fears, and help to integrate older volunteers who are
    computer illiterate into virtual volunteering.
        Programs could clearly benefit from sharing best practices about
    virtual volunteering.
        With Congressional support, the Corporation can facilitate the
    transition to the post-Corona world. It can lower age of eligibility to
    45, administer liability waivers as needed, and develop contingency
    plans if there is a winter resurgence of the virus. CNCS should allow
    RSVP Directors to provide mileage reimbursement to existing volunteers
    unable to volunteer because of a state Stay at Home Order. CNCS could
    develop and disseminate strategies to address the specific concerns of
    older volunteers, purchase gloves, masks and other PPE equipment to
    distribute to programs. It can work with IRS to relax rules on tax
    preparation to enable preparers to be more efficient as drop off sites.
    It could develop a blanket MOU that would allow programs to operate in
    other service areas as long as they are not competing to perform the
    same service.
        In short, the additional appropriation we seek can bring about a
    new era for RSVP in which volunteers perform virtual as well as
    traditional forms of volunteering.
        The pandemic has exacerbated several trends affecting seniors.
    Older Americans are facing higher costs for assisted living and
    healthcare and are facing greater social isolation. In many parts of
    the country-especially counties in the rural Midwest- older Americans
    are ``aging in place'' because disproportionate shares of young people
    have moved elsewhere. This leaves seniors dependent on a frayed social
    safety net and dependent on volunteers for needed services.
        According to the Population Reference Bureau, ``The aging of the
    baby boom generation could fuel a 75 percent increase in the number of
    Americans ages 65 and older requiring nursing home care, to about 2.3
    million in 2030 from 1.3 million in 2010. Demand for elder care will
    also be fueled by a steep rise in the number of Americans living with
    Alzheimer's disease, which could nearly triple by 2050 to 14 million,
    from 5 million in 2013.'' The need for RSVP has never been greater.
        Volunteers improve the quality of life for volunteers and those
    they help.
        According to an article published on April 22, 2018 in the Wall
    Street Journal, a study of 2,705 volunteers age 18 and older from found
    that 75 percent of those who volunteered in the past 12 months said
    volunteering made them feel physically healthier. A much larger study-
    one involving more than 64,000 subjects age 60-suggests that
    volunteering slows the cognitive decline of aging. The author of that
    study reported, ``The effect is significant. It's consistent.''
    Further, she said, ``we find that as people volunteer, their cognitive
    health scores improve. If they don't volunteer, their cognitive scores
    decline faster.'' The reasons behind volunteering's boost to cognitive
    health have to do with the unique characteristics of such activity.
    Unlike paid work, there is a ``different subjective well-being'' or
    ``warm glow'' that a volunteer experiences from helping people.
    Volunteering is also unique ``because it supplies mental, physical and
    social stimulation in one package.'' ``You have to move around, you
    interact with people, you think about activities.''
        Baby boomers are also particularly susceptible to loneliness, which
    undermines health and is linked to early mortality, and has been found
    to shorten lives as much as smoking or drinking. Being lonely may be
    worse than being obese. A study of recently widowed older adults found
    that ``higher intensity volunteering may be a particularly important
    pathway for alleviating loneliness among older adults.''
        A recent study of more than 64,000 subjects age 60 and older
    suggests that volunteering slows the cognitive decline of aging. The
    study found that volunteers score on average about 6 percent higher in
    cognitive testing than non-volunteers. The author concludes, ``We find
    that as people volunteer, their cognitive health scores improve. If
    they don't volunteer, their cognitive scores decline faster.''
        RSVP is a valuable resource because it is not means tested and
    recruits volunteers without regard to income. Usually, most serve
    between 10 and 40 hours a week, but there is no set schedule. RSVP is
    flexible allowing volunteers improve the lives of their neighbors and
    friends every day.
        RSVP is cost-effective and an excellent investment. The average
    Federal RSVP grant is about $80,000. This is less than the $90,156,
    which was national annual median cost of a semi-private room in a
    nursing home in 2019. In many states, it costs more to put one senior
    in a nursing home for a year than it does to support an entire RSVP
    program. Using Independent Sector's estimate of the value of an hour of
    volunteer service, RSVP volunteers provide more than $1 billion worth
    of service to the nation each year.
        RSVP is a ``destination'' for retiring ``baby boomers.'' Before the
    Coronavirus hit, some 10,000 ``baby boomers'' retired every day and
    will do so every day for the next 20 years. RSVP is the only national
    program able to place large numbers senior volunteers in high quality
    volunteer positions. CNCS reported that RSVP has increased the number
    of baby boomers in the program and provides those volunteers with high
    quality activities
        RSVP helps other seniors to live independently. RSVP volunteers
    help keep seniors in their homes.
        RSVP volunteers support veterans and military families.
        We believe that restoring funding for RSVP to $63 million will help
    RSVP transition into a more flexible and adaptable program that will
    result in significant benefits to both the volunteers and the
    communities they serve.
        For additional information, contact: Betty Ruth, NARSVPD President,
    at bruth@al-rsvp.com or Gene Sofer at eugenesofer@gmail.com.

        [This statement was submitted by Betty M. Ruth, President, National
    Association of RSVP.]
                                     ______

      Prepared Statement of the National Association of State Head Injury
                                 Administrators
        Dear Chairman Blunt and Ranking Member Murray:
        On behalf of the National Association of State Head Injury
    Administrators (NASHIA), thank you for this opportunity to submit
    testimony regarding the fiscal year 2021 appropriations for programs
    authorized by the Traumatic Brain Injury (TBI) Program Reauthorization
    Act of 2018 administered by the U.S. Department of Health and Human
    Services (HHS); and the National Institute on Disability, Independent
    Living, and Rehabilitation Research (NIDILRR) program authorized by the
    Workforce Innovation and Opportunity Act (WIOA) of 2014. WIOA
    transferred NIDILRR from the Department of Education to HHS and is
    Administered by the Administration for Community Living (ACL). For
    fiscal year 2021 NASHIA is requesting:

      --$19 million for HHS' Administration for Community Living's (ACL)
            TBI State Partnership Grant Program to provide funding to all
            states, territories and District of Columbia;
      --$6 million for the ACL Protection & Advocacy (P&A) Grant Program to
            increase the amount of the awards to each state P&A program;
      --$6.727 million for the Centers for Disease Control and Prevention's
            (CDC) TBI program authorized by the TBI Act of 2018 and
            administered by the National Center for Injury Prevention and
            Control (NCIPC)
      --$5 million additional funding for the NCIPC to establish and
            oversee a national concussion surveillance system authorized by
            the TBI Program Reauthorization Act of 2018.
      --$15 million over 5 years to expand NIDILRR research, administered
            by ACL, with the additional funding to expand the number of
            NIDILRR TBI Model Systems from 16 to 18.
        In addition, NASHIA supports funding for CDC's and ACL's older
    adult falls prevention program ($2.05 million and $5 million) and the
    injury control research centers ($9 million).
        In 2013, 2.8 million Americans sought treatment for or died from a
    TBI as the result of a car crash, fall, sporting or recreational
    injury, an assault or other contributing factor, impacting how a person
    is able to return to school, work, home and community due to the
    resulting cognitive, emotional, physical problems. It is a complex
    disability that challenges states' ability to provide the right
    services at the right time. As no two people with brain injury are
    alike, no two states are alike in how they provide services, supports
    and resources.
        The HHS' ACL Federal TBI State Partnership Grant Program is the
    only program that assists states in addressing the complex needs of
    individuals with TBI. Two years ago, ACL awarded 3-year grants to 24
    states at either $300,000 or $150,000 annually to improve and expand
    service delivery. Last year, the ACL awarded grants to three more
    states in the amount of $150,000 each year for 2 years. Considering the
    number of individuals who sustain a TBI each year and the number who
    are living with a TBI, this amount is certainly inadequate for states
    to address the extensive needs to assist individuals to live as
    independently as possible.
        Current state grantees have identified and are assisting high risk
    populations, which include youth and adults with TBI in juvenile
    justice and criminal justice systems; older adults with fall-related
    TBIs; returning servicemembers and veterans; and young children in pre-
    school programs through screening, training, and linking individuals to
    services. Some states are also addressing such issues as TBI and opioid
    misuse; improved linkages from hospital to home and community; and
    improving and expanding state and Federal funding streams that may be
    available for home and community-based services in lieu of nursing
    facility level of care. At the end of each grant funding cycle, states
    have found it difficult to continue these activities without increased
    and sustainable funding to help to continue this important work.
        Over the course of recovery, there are many entities involved that
    are difficult for those with a TBI and their families to negotiate.
    These entities include emergency departments; medical and
    rehabilitative facilities and programs, such as trauma designated
    hospitals; post-acute rehabilitation programs; education, if school
    aged; vocational rehabilitation, if returning to work; therapies to
    maintain physical and cognitive functioning; and community services and
    supports to enable the individual to return to the community to live as
    independently as possible. Payers for these type of services include
    private health insurance, Workers' Compensation; Medicaid; Medicare;
    state revenue; private pay; and public assistance programs. Navigating
    this path to recovery is overwhelming for individuals and their
    families. To assist with the coordination of rehabilitative care,
    services and supports, many states administer service coordination or
    case management systems supported by Medicaid, state funding or
    dedicated funding from fines or fees, referred to as trust fund
    programs. Not all states, however, have this resource and those states
    that do, may not have adequate provider networks throughout the state.
        States primarily incur the burden of TBI with regard to individuals
    who need on-going, crisis or short-term services and supports that are
    not paid for through private healthcare insurance plans. About half of
    the states have enacted legislation to establish a trust fund program
    for such purposes; a few state legislatures appropriate general revenue
    to fund services; about half of the states have implemented brain
    injury Medicaid Home and Community-Based Services (HCBS) waiver
    programs; and some state programs use a combination of these funding
    sources to support the array of needs. These services include post-
    acute rehabilitation; personal care; service coordination or case
    management; assistance with activities of daily living; in-home
    accommodations and modifications; transportation; and therapies,
    including behavioral, cognitive, speech-language and physical
    therapies. With limited state resources to address these needs, many
    individuals, particularly those with behavioral issues, addiction
    problems, and poor judgment, will find themselves homeless or in
    correctional facilities. The Federal grant program provides additional
    resources to address these issues.
        The ACL's Administration on Intellectual and Developmental
    Disabilities, which administers the TBI State Protection & Advocacy
    (PATBI) grant program, awards grants to each state and territory at a
    minimum of $50,000. The requested amount will increase the amount
    awarded to state and PATBI grantees.
        The requested $5 million for the CDC's National Center for Injury
    Prevention and Control to establish and oversee a national concussion
    surveillance system will greatly assist states as they target their
    resources to better meet and understand the needs of individuals who
    sustain a concussion. States also benefit from research conducted by
    the TBI Model Systems funded by NIDILRR), also housed in the ACL, to
    assist with ``best practices'' to ensure good outcomes.
        In keeping with our mission, NASHIA, a nonprofit organization,
    works on behalf of states to promote partnerships and build systems to
    meet the needs of individuals with TBI with the goal of all states
    having resources to assist individuals with TBI to return to home,
    community, work and school after sustaining a brain injury, as well as
    assistance to family members who often serve as primary caregivers.
        Federal funding is needed to help states to address injury
    prevention, including high risk populations such as older adult falls,
    and to help states to better determine and address needs through ACL
    TBI grants. Should you wish additional information, please do not
    hesitate to contact Becky Corby, NASHIA Government Relations, at
    (rcorby@ridgepolicygroup.com) or Susan L. Vaughn, Director of Public
    Policy, at (publicpolicy@nashia.org). Thank you for your continued
    support.

        [This statement was submitted by Susan L. Vaughn, Director of
    Public Policy,
    National Association of State Head Injury Administrators.]
                                     ______

    Prepared Statement of the National Association of State Long-Term Care
                               Ombudsman Programs
        Chairman Blunt and Ranking Member Murray, I present this testimony
    on behalf of the nearly 71,000 residents in Washington State's long-
    term care facilities and in collaboration with the National Association
    of State Long-Term Care Ombudsman Programs (NASOP). As you know, we are
    immersed in our work to serve the residents of long-term care
    facilities under the terrible cloud of the COVID-19 pandemic.
    Therefore, this testimony has not been updated since last year. Our
    requests, however, are still relevant to our current needs. Thank you
    for your past support of State Long-Term Care Ombudsman Programs
    (SLTCOPs) and the vulnerable citizens that it serves, particularly in
    the CARES Act. I submit this statement and the funding recommendations
    for the fiscal year 2021 for SLTCOPs administered through the
    Administration for Community Living, in the Department of Health and
    Human Services to include:

      --$20 million for assisted living ombudsman services under Title VII
            of the Older Americans Act;
      --$35 million for our current core funding under Title VII of the
            OAA; and
      --$5 million under the Elder Justice Act for training and services to
            address increasing abuse, neglect, and exploitation, including
            related to staff that are part of the opioid crisis.
        Long-term care ombudsmen help older adults and people living with
    disabilities have a good quality of life, receive quality care, and be
    treated with dignity. LTC Ombudsmen are paid professionals who recruit,
    train and oversee teams of local volunteers who want to give back to
    their communities. The advocacy we provide is the first line of
    protection for thousands of elders living in licensed long-term care
    facilities. Last year, volunteers in Washington donated approximately
    34,002 hours of their time and skill to resolve complaints made to the
    program with a success rate of nearly 90 percent. We save the State
    resources by resolving complaints at the lowest level keeping them out
    of the expensive regulatory and legal systems. However, like our sister
    program's across the nation, we are not able to keep up with consumer
    needs and growing costs which is of concern giving the aging of the
    baby boomer generation in the U.S.
        In Washington and other states, the number of Assisted Living
    Facility residents has grown tremendously. By the end of 2019,
    Washington will have 2,000 additional assisted living facility beds but
    no expansion in ombudsman services. The growing number of long-term
    care residents makes it financially and resources to provide the cost
    saving advocacy services provided by LTC Ombudsman Programs.
        To alleviate the effects of diminished budgets and expanding long-
    term care populations, we respectfully request the following funding to
    support all SLTCOPs.
        First, we request $20,000,000 to support SLTCOP work with residents
    of assisted living, board and care, and similar community-based long-
    term care settings. While the mandate to serve residents in assisted
    living facilities was added to our mission Act, there have been no
    appropriations for this function. Assisted living and similar
    businesses have boomed, but SLTCOP funding has not increased to meet
    the demand and respond to the industry boom.
        Washington State has demonstrated leadership by reducing costs in
    their Medicaid system, while improving consumer choice in community
    based long-term. Assisted living has proven to be a viable option for
    those who qualify for more costly nursing home care, but wish to
    exercise their choice to live in assisted living. Assisted living
    residents have complex medical needs, very much like the nursing home
    residents of 20 years ago. Growth in the number of assisted living
    facilities, in conjunction with complex needs of consumers and
    diminished funding, threatens our nation's Long-Term Care Ombudsman
    Programs. These challenges to State Programs hinder our ability to meet
    program requirements to provide regular and timely access to all
    residents wanting long-term care ombudsman services. Current funding
    levels preclude SLTCOPs from quickly responding to complaints and
    monitoring facilities. Without our eyes and ears in these buildings,
    residents are at risk of abuse, neglect, and serious financial
    exploitation, and any number of violations to their rights.
        Our second request is for $35,000.000, which is needed to provide
    core program funding for the program under Title VII of the Older
    Americans Act. These funds must be allocated to all fifty states. In
    addition to improving the quality of life and care for millions of
    vulnerable long-term care residents, our work saves Medicare and
    Medicaid funds by avoiding unnecessary costs associated with poor
    quality care, unnecessary hospitalizations and expensive procedures and
    treatments. Furthermore, nationally in 2016, nearly 7,331 volunteers
    served in the SLTCOP. For every one staff ombudsman, six volunteer
    ombudsmen serve residents. Ombudsman staff and volunteers investigated
    199,493 complaints made by 129,559 individuals. Ombudsmen were able to
    resolve or partially resolve 74 percent--or an ombudsman resolved three
    out of every four complaints investigated.
        In 2018, Washington State had 3,818 long-term care facilities with
    approximately 71,000 residents. Our state program includes myself, and
    two other full time staff, which has not changed much since 1989.
    Thankfully, we have great partnerships with other not-for-profits to
    operate local ombudsman programs, extending our reach into the most
    isolated of nursing home residents in our rural communities. These
    partners include seven Area Agency on Aging entities and three
    Community Action Programs and in total, we employ 17.51 full-time
    staff. Two national studies about the effectiveness about the LTC
    Ombudsman Program (the Institute of Medicine, and the Bader Report)
    have recommended that best practice be to employee one full-time paid
    staff ombudsman for every 2,000 long-term care residents or licensed
    beds. Washington State falls short of that goal at having only 49
    percent of the needed paid staff.
        Although we have a great team of paid and volunteer ombudsmen, our
    program is still not able to cover every facility in our state. Nearly
    half of the licensed facilities in our state never receive routine
    visits by an ombudsman, which is the hallmark activity of the Program
    and vital to building trusting and effective working relationships. We
    are so busy responding to complaints and phone calls that we are not
    able to conduct regular outreach, build presence in all facilities, and
    make our services known to isolated residents and their family members.
    We are overwhelmed with complaints about unwanted and unlawful
    discharges, also known as, ``resident dumping'' by residents, their
    loved ones and by hospitals, which involves expensive legal issues,
    interactions with multiple health and long-term care community systems,
    state entities and the courts.
        Third, we request $5,000,000 to support the work of SLTCOPs under
    the Elder Justice Act (EJC). This appropriation would allow states to
    hire and train staff and recruit more volunteers to prevent abuse,
    neglect, and exploitation of residents and investigate complaints.
    However, the funds have been authorized since 2010, to date no EJC
    funds have been appropriated for SLTCOPs. Currently, Federal Older
    Americans Act funding comprises about a third of the total funding
    required to maintain the Washington Long-Term Care Ombudsman Program,
    at its current level, with the majority of funding coming from our
    State General Funds. We understand that this subcommittee faces a
    strained financial situation, but a continued commitment to SLTCOPs
    protects the health and safety of millions of older adults living in
    nursing homes and assisted living facilities. I believe their
    protection should remain a high priority.
        Demand for our services is growing. The number of complex and very
    troubling cases that long-term care ombudsmen investigate has been
    steadily increasing. In addition, there continues to be a disturbing
    increase in the frequency and severity of citations for egregious
    regulatory violations by long-term care providers that put residents in
    immediate jeopardy of harm, which, unfortunately, is true for nursing
    homes in my state. Ombudsmen are needed now more than ever in nursing
    homes, assisted living, and similar care facilities where we are
    required to serve.
        The people who operate long-term care facilities have recognized
    the value and benefit of having ombudsmen assist with staff training
    and consultation. In order to improve advocacy and services available
    to residents, our office and NASOP respectfully request the
    aforementioned funding levels. We also appreciate that the testimony of
    the Elder Justice Coalition also calls for these increases.
        Thank you for your ongoing support.

        [This statement was submitted by Patricia L. Hunter, MSW,
    Washington State Long-Term Care Ombudsman.]
                                     ______

         Prepared Statement of the National Coalition of STD Directors
        Chairman Blunt, Ranking Member Murray, and Subcommittee Members:
        I am providing this testimony on behalf of the National Coalition
    of STD Directors (NCSD), a national membership organization
    representing STD programs at health departments in all 50 states, seven
    large cities or counties, and eight U.S. territories, to request
    funding for the Division of STD Prevention at Centers for Disease
    Control and Prevention (CDC) at no less than $1.6 billion, no less than
    $20 million for a special initiative to end congenital (mother to
    child) syphilis, and no less than $1.8 billion in COVID-19 supplemental
    funding to support STD programs in their response to the novel
    coronavirus . This testimony reflects the voices and perspectives of
    STD programs across the U.S. who are overwhelmed, underfunded and
    fighting a losing battle against sexually transmitted diseases (STDs).
        I have a very simple message for you and that is that STD
    prevention is core public health work. STD programs have been leaders
    in quickly responding to outbreaks for years. Fighting the coronavirus
    pandemic has shown how important contact tracing is to prevent the
    spread of viruses or infections. The unsung heroes on the front lines
    of contact tracing and keeping Americans safe every day are Disease
    Intervention Specialists (DIS). After an individual tests positive for
    an STD, DIS are responsible for identifying their partners and ensuring
    that exposed individuals are connected to testing and treatment. In the
    United States today there are 2,000 DIS, 75 percent of whom are trained
    in emergency response. We've heard from our membership that DIS are
    being reassigned to support with coronavirus response, including
    training and supervising the hiring of new contact tracing teams. This
    means while DIS are performing vital investigations related to COVID-
    19, it comes at the cost of preventing more STD infections. DIS are
    often the first to be deployed in assisting with outbreak response, but
    for years have been underfunded. Now, in a time of increased need, DIS
    are stretched thin. We need to invest in them now, not only to support
    any future crisis, but to support them in addressing STDs, which are
    currently at the highest levels ever.
        STD program staff are highly trained in interviewing, blood draws,
    and implementing culturally sensitive care, which are all essential
    skills needed for outbreak response. DIS and STD epidemiologists are
    first on-the-scene when there is an infectious outbreak, but for more
    than 15 years, the STD programs that support them have been flat-
    funded. Without resources to hire and train new staff, STD programs
    have been hallowed out. Coronavirus response has shown us how crucial
    these workers are and will continue to be in the future. U.S. Congress
    must invest in STD programs to protect the current and future health of
    Americans.
        Furthermore, as our woefully unprepared medical and public health
    systems respond to COVID-19, STD clinics have also been on the front
    lines to combat the outbreak. To respond to COVID-19 STD clinics have
    reduced or suspended services and clinics have become de facto COVID-19
    testing sites. Patient access to STD services across the country has
    been disrupted tremendously, and the barriers to care are
    insurmountable indefinitely as we await the trajectory of the virus.
        As we work to bring COVID-19 under control, we want to also look
    ahead to help states and clinics train and expand STD programs so they
    are prepared for other contagious disease outbreaks while still
    maintaining their focus on STDs. A supplemental increase of $1.8
    billion, $1.3 billion to hire and train DIS and $500 million to support
    clinics will help STD programs and providers in their response to
    coronavirus while also maintaining their regular workload and public
    health operations.
        With STDs at epidemic levels, and in a field that is already
    woefully underfunded, there must continue to be dedicated resources for
    identifying and testing new cases, otherwise rising STD rates will
    continue unabated. Data released in October 2019 by the Centers for
    Disease Control showed that after 5 years of dramatic increases,
    combined cases of syphilis, gonorrhea, and chlamydia reached all-time
    highs in the U.S. These historic increases have created a public health
    emergency with devastating long-term health consequences including
    infertility, cancer, transmission of HIV, and infant and newborn death.
    This number is expected to drastically increase due to years of limited
    resources, and the much-needed redistribution of STD resources to fight
    the novel coronavirus. Supporting an increase of $1.6 billion to STD
    prevention at CDC in fiscal year 2021 is an important investment in our
    public health infrastructure, and for keeping Americans healthy.
        Did you know that last year over 1,000 infants were born with
    congenital syphilis in the United States? Congenital syphilis occurs
    when syphilis is passed from a mother to her baby during pregnancy or
    delivery. Congenital syphilis increased by more than 40 percent between
    2017 and 2018, resulting in a 22 percent increase in newborn deaths.
    Congenital syphilis is completely preventable with early prenatal care
    and STD testing. Unfortunately, during coronavirus response, some DIS
    have had to reduce the number of syphilis case investigations to assist
    with COVID-19 contact investigations. We cannot let mothers with
    potential syphilis infections slip during the cracks in the midst of
    another infectious disease outbreak. It is critical that we provide
    adequate funding in order to eliminate syphilis in our lifetime. Are
    you aware that in 2018 congenital syphilis cases surpassed the number
    of perinatal HIV cases? This is largely thanks to the Federal
    investment in innovative approaches dedicated to HIV, resulting in the
    number of reported perinatal HIV cases to decrease. With your support
    we can achieve similar results for congenital syphilis. The Senate must
    invest $20 million in direct service funding for congenital syphilis
    prevention and treatment.
        In summary, supporting STD programs is supporting public health.
    For the past 15 years the Federal STD program at CDC has been level
    funded resulting in a crumbling infrastructure and inadequate tools for
    preventing new cases of STDs. It is times like these that showcase the
    importance of our public health workforce. If the Senate does not
    invest in STD programs now, not only will there not be enough workers
    for future outbreaks, but the United States will continue to see STD
    rates skyrocket, and newborns die. In order to ensure that STD programs
    have the support they need to fight coronavirus, and bounce back once
    the outbreak response is completed, the United States Senate must:
      --Support a supplemental increase of $1.8 billion to respond to the
            novel coronavirus
        --$500 million for STD clinics
        --$1.3 billion to hire and train DIS to conduct contract tracing
      --Increase STD funding at CDC by $1.6 billion in fiscal year 2021
      --Invest $20 million in ending Congenital Syphilis
        By taking these small steps, the Senate will show its support for
    this crucial public health program, and avert STD consequences
    including infertility, newborn death, new HIV cases, and cancer.
        If you have any questions or would like additional information,
    please contact NCSD's Taryn Couture, associate director of policy
    government relations, at tcouture@ncsddc.org.
        Sincerely.

        [This statement was submitted by David Harvey, Executive Director,
    National
    Coalition of STD Directors.]
                                     ______

        Prepared Statement of the National Congress of American Indians
        On behalf of the National Congress of American Indians (NCAI), the
    oldest, largest, and most representative national organization
    comprised of American Indian and Alaska Native tribal nations, thank
    you for the opportunity to provide written testimony regarding fiscal
    year 2021 appropriations on funding for tribal and related programs in
    the Departments of Education, Health and Human Services, Labor, and
    Related Agencies.
                          u.s. department of education
        It is imperative that American Indian/Alaska Native (AI/AN)
    students receive a quality education. However, in Indian Country,
    daunting challenges are preventing this from becoming a reality for all
    AI/AN students, including aging school facilities, limited access to
    broadband, ruralness and remoteness impacting school attendance,
    difficulty recruiting and retaining teachers, and a lack of culturally
    appropriate educational opportunities. These challenges have led to a
    graduation rate of 72 percent for AI/AN students compared to an 85
    percent graduation rate for the rest of the country.
        There are approximately 620,000 (93 percent) Native students
    enrolled in public schools in both urban and rural areas, while 45,000
    (seven percent) attend schools within the Bureau of Indian Education.
    Effectively reaching all Native students requires a concentrated and
    sustained effort from multiple partners: tribal nations, the Federal
    Government, state and local education agencies, Native parents and
    families, and communities. Accordingly, NCAI requests the following
    levels of programmatic support.

             U.S. DEPARTMENT OF EDUCATION FISCAL YEAR 2021 REQUESTS
    ------------------------------------------------------------------------
                                                          NCAI Fiscal Year
               Department Education Programs                2021 Request
    ------------------------------------------------------------------------
    Title 1, Part A (Local Education Agency Grants)...       $20,000,000,000
    Student Assessment Systems under the Every Student           $35,000,000
     Succeeds Act (ESSA)..............................
    State-Tribal Education Partnership (STEP) Program.            $5,000,000
    Title VII funding, ESEA (Impact Aid Funding)......        $2,000,000,000
    Title VI funding, Every Student Succeeds Act                $198,000,000
     (ESSA)...........................................
    Native Hawaiian Student Education (Title VI, Part            $42,000,000
     B)...............................................
    Alaska Native Education Equity Assistance Program            $42,000,000
     (Title VI, Part C)...............................
    Indian Education Language Immersion Grants (Title            $18,000,000
     VI)..............................................
    Special Programs for Native Student, Including               $68,000,000
     Native Youth Community Projects..................
    Title III-A Grants under the Higher Education Act            $81,696,000
     for Tribal Colleges and Universities.............
    Tribal Colleges and Universities: Adult/Basic                 $8,000,000
     Education........................................
    Tribally Controlled Post-Secondary Career and                $12,000,000
     Technical Institutions and Technical Institutions
    Native American-Serving, Non-Tribal Institutions             $10,000,000
     (Higher Education Act, Title III-F)..............
    Tribal Education Departments (Dept. of Ed)........           $10,000,000
                                                       ---------------------
        Total.........................................       $22,529,696,000
    ------------------------------------------------------------------------

        Indian Education: Alaska Native Education Program (Title VI, Part
    C) and Native Hawaiian Education Program (Title VI, Part B): NCAI is
    concerned that the President's fiscal year 2021 budget eliminates
    funding for the Alaska Native Education Program and the Native Hawaiian
    Education Program. These programs fund the development of curricula and
    education programs that address the unique educational needs of Alaska
    Native and Native Hawaiian students, as well as the development and
    operation of student enrichment programs. NCAI recommends funding these
    two programs, each at $42 million for fiscal year 2021.
                  u.s. department of health and human services
        The health and wellness of tribal communities depends on a network
    of healthcare, education, wellness service providers, prevention
    coordination, and tribally-driven initiatives. Despite the Federal
    government's trust responsibility to provide healthcare, the Indian
    Health Service, Tribal Health Programs, and Urban Indian Organizations
    (collectively known as the I/T/U) system face significant funding
    disparities, notably in per capita spending between the Indian Health
    Service (IHS) and other Federal healthcare programs. The I/T/U system
    is critical to securing the health and wellness of tribal communities.
    To meet the Federal Government's fiduciary responsibility and the
    health needs of tribal communities, NCAI requests the following levels
    of programmatic support.

        DEPARTMENT OF HEALTH AND HUMAN SERVICES FISCAL YEAR 2021 REQUESTS
    ------------------------------------------------------------------------
                                                          NCAI Fiscal Year
     Department of Health and Human Services Programs       2021 Request
    ------------------------------------------------------------------------
    Total Fiscal Year 2021 Indian Health Service              $9,145,000,000
     Funding..........................................
        Services......................................        $6,825,000,000
        Contract Support Costs........................          $922,300,000
        Facilities....................................        $1,398,000,000
    Special Diabetes Program for Indians (SDPI).......          $200,000,000
    On the TRAIL (Together Raising Awareness for                  $1,000,000
     Indian Life) to Diabetes Prevention Program......
    HRSA Native Hawaiian Healthcare Systems Program...           $25,000,000
    Ending HIV Epidemic/Hepatitis C Initiative........           $25,000,000
    Head Start........................................       $10,810,000,000
    TCU Head Start Partnership Program................            $8,000,000
    Native Languages Preservation (NLP), with Esther    $15,000,000 for NLP,
     Martinez Program (EMP)...........................  W/$6,000,000 for EMP
    Promoting Safe and Stable Families, Title IV-B,             $110,000,000
     Subpart 2 Discretionary Funds (3 percent tribal
     allocation reserved from this amount)............
    Tribal Court Improvement Grant Program (authorized            $3,000,000
     under Title IV-B, Subpart 2).....................
    Child Abuse Discretionary Activities, Innovative             $38,000,000
     Evidence-Based Community Prevention Program......
    Community-Based Child Abuse Prevention............           $60,000,000
    Maternal Infant and Early Childhood Home Visiting           $420,000,000
     Program..........................................
    Child Welfare Services, Title IV-B, Subpart 1               $280,000,000
     (tribal allocation reserved from this amount)....
    SAMHSA Programs of Regional and National                     $8,000,0000
     Significance, Child and Family Programs..........
    SAMHSA Garrett Lee Smith Grants, State/Tribal                $40,000,000
     Youth Suicide Prevention and Early Intervention
     Grant............................................
    SAMHSA Garrett Lee Smith Grants, Campus Suicide              $9,000,000+
     Prevention Program...............................
    SAMHSA American Indian and Alaska Native Suicide              $5,000,000
     Prevention.......................................
    SAMHSA Tribal Behavioral Health Programs (Mental             $50,000,000
     Health and Substance Abuse Programs).............
    Older Americans Act (Title VI-Part A,B)...........           $43,000,000
    Older Americans Act (Title VI-Part C).............           $12,100,000
    Older Americans Act (Title VII-Subtitle B)........      5 percent tribal
                                                                   set-aside
    Low Income Home Energy Assistance Program (LIHEAP)   $4,700,000,000 with
                                                                 $51,000,000
                                                         allocated to tribes
                                                                  and tribal
                                                               organizations
                                                       ---------------------
        Total.........................................       $26,085,400,000
    ------------------------------------------------------------------------

        Substance Abuse Mental Health Services Administration: These funds
    are critical to supporting mental health services and substance abuse
    prevention activities aimed at high-risk American Indian and Alaska
    Native youth and their families. NCAI requests $50 million in total for
    SAMHSA Tribal Behavioral Health Programs ($25 million for Mental Health
    and $25 million for Substance Abuse Programs).
        Low-Income Home Energy Assistance Program (LIHEAP): NCAI requests
    $4.7 billion for LIHEAP, with $51 million directly allocated to tribal
    nations and tribal organizations. LIHEAP helps low-income households
    and seniors with their energy bills, providing vital assistance during
    both the cold winter and hot summer months.
                            u.s. department of labor
        Workforce development success in Indian Country depends on the
    ability of tribal nations, Native organizations, and Tribal Colleges
    and Universities (TCUs) to craft innovative, customized solutions
    designed for the particular capacity building needs of their tribal
    communities. To that end, the appropriate role of the Federal
    Government is to support governance freedom, programmatic flexibility,
    training and technical assistance, and resources that Indian Country
    needs to design and implement bold strategies capable of advancing each
    community's workforce development priorities. The Federal Government
    must work closely with tribal communities to identify and address
    obstacles that currently obstruct tribal innovation and create new
    opportunities for tribal ingenuity to flourish. The Federal Government
    must endow its systems, programs, and funding protocols with the ease
    and adaptability that tribal nations need to effectively build their
    human capacity in accordance with their cultural values and in
    furtherance of their community and economic development goals. The
    following fiscal year 2021 budget requests set forth appropriation
    levels that are essential to empowering tribal efforts to advance the
    economic security of tribal nations.

                  DEPARTMENT OF LABOR FISCAL YEAR 2021 REQUESTS
    ------------------------------------------------------------------------
                                                          NCAI Fiscal Year
               Department of Labor Programs                 2021 Request
    ------------------------------------------------------------------------
    YouthBuild Program................................           $89,000,000
    Division of Indian and Native American Programs              $60,500,000
     (DINAP)..........................................
    Native American Employment and Training Council...              $125,000
    Older Americans Act (Title V), Senior Community             $434,371,000
     Service Employment Program.......................
                                                       ---------------------
        Total.........................................          $583,996,000
    ------------------------------------------------------------------------

        Senior Community Service Employment Program (SCSEP): NCAI urges
    Congress to fund SCSEP at $434 million. This program is the only
    Federal job training program focused exclusively on helping older
    Americans return to the workforce. Through the program, low-income job-
    seekers (55 years of age or older) update their skills and contribute
    to their communities through paid, on-the-job training at schools,
    hospitals, senior centers, tribal facilities, and other non-profit or
    public facilities.
                   corporation for public broadcasting (cpb)
        The ability to communicate keeps communities safe and promotes
    trade and commerce. Tribal access to modern communications networks
    supports economic development, tribal governance, healthcare,
    education, and public safety in tribal and surrounding communities.
    NCAI requests the following levels of programmatic support.

       CORPORATION FOR PUBLIC BROADCASTING (CPB) FISCAL YEAR 2021 REQUESTS
    ------------------------------------------------------------------------
                                                          NCAI Fiscal Year
            Corporation for Public Broadcasting             2021 Request
    ------------------------------------------------------------------------
    American Indian and Alaska Native Radio Station               $7,000,000
     Grants...........................................
    Native Public Media...............................              $500,000
    Native Public Media and Koahnic Broadcast                       $500,000
     Corporation......................................
                                                       ---------------------
        Total.........................................            $8,000,000
    ------------------------------------------------------------------------

                                   conclusion
        NCAI appreciates the opportunity to share these recommendations.
    For more information, please contact Fatima Abbas, Director of Policy
    and Legislative Counsel, at fabbas@ncai.org or Nicholas Courtney,
    Policy Analyst, at ncourtney@ncai.org.
                                     ______

           Prepared Statement of the National Consumer Law Center \1\
    ---------------------------------------------------------------------------
        \1\ Since 1969, the nonprofit National Consumer Law Center(r)
    (NCLC(r)) has worked for consumer justice and economic security for
    low-income and other disadvantaged people in the U.S. through its
    expertise in policy analysis and advocacy, publications, litigation,
    expert witness services, and training.
    ---------------------------------------------------------------------------
        The Federal Health & Human Services' Low Income Home Energy
    Assistance Program (LIHEAP) \2\ is the cornerstone of government
    efforts to help low-income seniors and families afford essential home
    energy services.\3\ LIHEAP is a particularly important safety net
    program for the record number of unemployed and underemployed
    households struggling with lost jobs and diminished wages in the wake
    of the devastating economic disruption due to the COVID-19 pandemic.\4\
    We respectfully request that the subcommittee fund LIHEAP at the full
    authorized amount of $5.1 billion and note the need is likely to be
    greater.

        \2\ 42 U.S.C. Sec. Sec. 8621 et seq.
        \3\ Stories about the value of LIHEAP:
        ``Justine of Missouri: I work for a nonprofit that helps keep low-
    income, medically vulnerable St. Louisans safe in their own homes from
    extreme temperatures. So many of the people we serve rely on LIHEAP to
    keep their utilities on and their homes habitable. We consider
    ourselves, in part, a homelessness prevention organization. Without the
    ability to heat their homes in winter, our clients will not be able to
    age in place but will have to move in with family (if they even have
    any). Our donors are incredible and we're able to do so much, but we
    can't do it alone. Our community, like many others, needs LIHEAP.'';
    and,
        ``Raylene from California: I am living again in my central
    California hometown because of the relatively low cost of living here.
    I rent a low cost senior apartment and have minimal insurance for my 13
    year old car. I have the lowest cost medicare supplemental insurance I
    can find and all my other expenses are as low as I can keep them. I had
    to drop my renter's insurance and the newspaper because I just can't
    afford them. My $1103 in Social Security has stretched as far as I can
    manage. Without the HEAP program I would not be able to run the air
    conditioner during the 3 months of summer when temperatures are close
    to 100. We have a lot of seniors with the same concerns; please
    envision yourself in our shoes and keep this program for us. Thank
    you.'' For more stories, see LIHEAP Stories available at https://
    neuac.org/advocacy/save-liheap/liheap-stories/.
        \4\ See e.g., Sarah Hansen, 2.4 Million Workers Filed For
    Unemployment, Bringing Total to More Than 38 Million, Forbes (May 21,
    2020), available at: https://www.forbes.com/sites/sarahhansen/2020/05/
    21/24-million-workers-filed-for-unemployment-last-week-bringing-total-
    to-more-than-38-million/#56c4ada9eb91.

        The United States is the midst of unprecedented times as the world
    addresses a novel coronavirus pandemic (COVID-19). Public heath
    directives in most states led to the closure of non-essential
    businesses to slow the spread of COVID-19, hitting lower-wage service
    economy workers, low-income families and black and Hispanic workers
    particularly hard.\5\ The CBO predicts unemployment in Q3 2020 could
    reach15.8 percent.\6\ Economists predict the United States could
    experience an economic downturn as severe as, or worse than the Great
    Recession caused by the housing market collapse.\7\ Federal Reserve
    Chairman Powell warns that an economic recovery could take more than a
    year and that a full recovery might not be possible without a
    vaccine.\8\ This caution is echoed by the CBO \9\ and the former
    director of the Centers for Disease Control and Prevention (CDC).\10\
    ---------------------------------------------------------------------------
        \5\ See e.g., Board of Governors of the Federal Reserve System,
    Report on the Economic Well-Being of U.S. Households in 2019, Featuring
    Supplemental Data from April 2020 (May 2020) at p.53, available at
    https://www.Federalreserve.gov/publications/files/2019-report-economic-
    well-being-us-households-202005.pdf (39 percent of workers with
    household incomes under $40,000 have lost their jobs); see also, CBO,
    Interim Economic Projections for 2020 and 2021 (May 2020) at p.4,
    available at https://www.cbo.gov/publication/56368 (employment between
    February and April 2020 declined by 16 percent overall, but by 21
    percent for Hispanic workers and 18 percent for black workers).
        \6\ See CBO, Interim Economic Projections for 2020 and 2021 at p.1
    (May 2020) available at https://www.cbo.gov/publication/56368.
        \7\ See Peter Cohan, COVID-19's Worst Case? 10.6 percent Jobless
    Rate, $1.5 Trillion GDP Drop, Forbes (Mar. 21, 2020), available at:
    https://www.forbes.com/sites/petercohan/2020/03/21/covid-19s-worst-
    case-106-jobless-rate-15-trillion-gdp-drop/#3ab4a19a10a2.
        \8\ See Sarah Hansen, Full Economic Recovery Unlikely Without
    Coronavirus Vaccine: Fed Chair Powell, Forbes (May 18, 2020) available
    at https://www.forbes.com/sites/sarahhansen/2020/05/18/full-economic-
    recovery-unlikely-without-coronavirus-vaccine-fed-chair-powell/
    #d7fa3f76f586.
        \9\ See CBO, Interim Economic Projections for 2020 and 2021 at p.2
    (May 2020) available at https://www.cbo.gov/publication/56368 (``The
    persistence of social distancing will keep economic activity and labor
    market conditions suppressed for some time.'').
        \10\ See Dr. Tom Frieden, Former CDC director: There's a long war
    ahead and our Covid-19 response must adapt, CNN Health (Updated 9:33
    AM, Mar.21, 2020). Available at: https://www.cnn.com/2020/03/20/health/
    coronavirus-response-must-adapt-frieden-analysis/index.html (cautions
    the American public that this is going to be a long crisis, and because
    COVID-19 is so contagious we may need to maintain social distancing for
    an extended period of time).
    ---------------------------------------------------------------------------
        In most states, governors, state public utility commissions and
    private utility companies have implemented consumer protections from
    utility disconnections during the crisis.\11\ These disconnection
    moratoria have been vital to protecting the health and safety of
    households, helping to slow the transmission of the virus by
    facilitating physical distancing by allowing people to safely stay at
    home. However, we estimate that many millions of low-income and newly
    low-income households will face the start of the fiscal year 2021
    heating season already disconnected or in danger of utility
    disconnection. While the shut-off moratoria allow households to
    continue to receive utility service, they will also continue to receive
    utility bills and we anticipate that, due to the high unemployment
    rate, unpaid utility arrearages will climb during the crisis. These
    utility arrearages, combined with other financial hardships, will
    likely drive a surge in demand for LIHEAP benefits in fiscal year 2021.
    ---------------------------------------------------------------------------
        \11\ See National Assoc. of Regulatory Utility Commissioners, State
    Response
    Tracker, at https://www.naruc.org/compilation-of-covid-19-news-
    resources/state-response-tracker/; Energy and Policy Institute tracker
    at https://www.energyandpolicy.org/utilities-disconnect-coronavirus/.
    ---------------------------------------------------------------------------
        The longer the shut-off moratoria are in place, the larger the
    arrearages for these households, for multiple essential utility
    services and other debt obligations. Conservative estimates of
    residential electricity customers in arrears during the COVID-19
    disconnection moratoria range from $6 billion to $14 billion.\12\
    ---------------------------------------------------------------------------
        \12\ See John Howat, Skyrocketing Utility Arrears during COVID-19
    Crisis: The Need for Substantial Federal Support, NCLC (April 2020)
    available at https://www.nclc.org/images/pdf/special_projects/covid-19/
    IB_Electric_Service_Arrearage_Narrative.pdf (very optimistic scenario
    of 20 percent of residential customers with a 60-day arrearage balance
    versus realistic scenario of 40 percent of residential customers with a
    90-day arrearage balance).
    ---------------------------------------------------------------------------
        For decades, LIHEAP has been a reliable safety net program
    specifically tailored to help low-income households stay warm and avoid
    hypothermia in the winter, as well as stay cool and avoid heat stress
    (even death) in the summer. The program is currently funded at $4.64
    billion ($3.74 billion through the fiscal year 2020 appropriation \13\
    along with an additional $900 million through the CARES Act).\14\
    ---------------------------------------------------------------------------
        \13\ Further Consolidated Appropriations Act, 2020 (Public Law 116-
    94).
        \14\ Coronavirus Aid, Relief, and Economic Security (CARES) Act
    (Public Law 116-136).
    ---------------------------------------------------------------------------
        Fiscal year 2019 funding for LIHEAP at $3.74 billion was estimated
    to help 6 million households maintain essential home energy
    service.\15\ Yet, at a time when the U.S. economy was far more robust,
    only an estimated one in five eligible households was served by LIHEAP
    in fiscal year 2019.\16\ Before COVID-19, there was already a large
    percentage of the population living on the edge of financial hardship.
    According to the U.S. Department of Energy's data, about one-third of
    U.S. households report struggling with energy affordability.\17\ In
    2019, the Federal Reserve reported that 4 in 10 households would have
    difficulty with an unexpected expense of $400 and that 3 in 10
    households would be unable to pay their bills.\18\ A growing body of
    research has documented the rise in household income volatility (the
    dramatic fluctuation of income over time) and the impacts on household
    well-being.\19\ Pre-COVID-19, approximately one-third of households
    experienced income volatility \20\ with irregular work schedules as the
    leading cause of volatility.\21\ Analysis of material hardship for low
    and moderate income consumers experiencing income volatility found much
    higher rates of inability to afford bills, medical care, housing
    payments and food,\22\ and a higher likelihood to resort to expensive
    payday loans to pay for basic living expenses.\23\ Thus, pre-COVID, too
    many households experienced economic fragility and energy insecurity.
    Now, with the economic devastation of COVID-19, a bold governmental
    response is necessary to keep struggling families connected to
    essential home energy service.
    ---------------------------------------------------------------------------
        \15\ Testimony of the National Energy Assistance Directors'
    Association, House Subcommittee on Labor, Health and Human Services and
    Education and Related Agencies (April 8, 2019).
        \16\ See Katrina Metzler, National Energy and Utility Affordability
    Coalition's House Subcommittee on Labor, Health and Human Services and
    Education and Related Agencies fiscal year 2021 LIHEAP testimony
    (Mar.23, 2020).
        \17\ See U.S. Energy Information Administrations, Residential
    Energy Survey, ``One in three U.S. households faced challenges in
    paying energy bills in 2015'' (Sept. 2018), at https://www.eia.gov/
    consumption/residential/reports/2015/energybills/.
        \18\ See Board of Governors of the Federal Reserve, ``Report on the
    Economic Well-Being of U.S. Households in 2018 (May 2019) at p.21,
    available at https://www.Federalreserve.gov/consumerscommunities/files/
    2018-report-economic-well-being-us-households-201905.pdf.
        \19\ See e.g., Federal Reserve Survey of Household Economics and
    Decisionmaking reports available at https://www.Federalreserve.gov/
    consumerscommunities/shed.htm; The Aspen Institute Expanding Prosperity
    Impact Collaborative (EPIC) series on the issue of income volatility
    available at http://www.aspenepic.org/epic-issues/income-volatility/;
    see also, Pew Charitable Trusts, How Income Volatility Interacts with
    American Families; Financial Security (Mar 2017) available at https://
    www.pewtrusts.org/en/research-and-analysis/issue-briefs/2017/03/how-
    income-volatility-interacts-with-american-families-financial-security.
        \20\ See Daniel Schneider and Kristen Harknett, Income Volatility
    in the Service Sector: Contours, Causes and Consequences (July 2017) at
    p.3, available at http://www.aspenepic.org/epic-issues/income-
    volatility/issue-briefs-what-we-know/issue-brief-income-volatility-
    service-sector/; see also, Board of Governors of the Federal Reserve,
    Report on the Economic Well-Being of U.S. Households in 2018 (May 2019)
    at p.2, available at https://www.Federalreserve.gov/
    consumerscommunities/files/2018-report-economic-well-being-us-
    households-201905.pdf.
        \21\ See Income Volatility: A Primer(May 2016) The Aspin Institute
    Financial Security Program and EPIC at p.5, available at https://
    www.aspeninstitute.org/publications/income-volatility-a-primer/; see
    also, Daniel Schneider and Kristen Harknett, Income Volatility in the
    Service Sector: Contours, Causes and Consequences (July 2017) at p.3,
    available at http://www.aspenepic.org/epic-issues/income-volatility/
    issue-briefs-what-we-know/issue-brief-income-volatility-service-sector/
    ; see also Asset Funders Network, Income Volatility: Why it
    Destabilizes Working Families and How Philanthropy Can Make a
    Difference at p.6m available at https://assetfunders.org/resource/afn-
    income-volatility-2017/.
        \22\ See Stephen Roll, David S. Mitchell, Krista Holub et al.,
    Responses to and Repercussions from Income Volatility in Low- and
    Moderate-Income Households: Results from a National Survey, Aspen
    Institute EPIC, Center for Social Development, Intuit Tax & Financial
    Center (Dec. 2-17) at pp 6-7, available at https://
    www.aspeninstitute.org/publications/responses-repercussions-income-
    volatility-low-moderate-income-households-results-national-survey/.
        \23\ See Daniel Schneider and Kristen Harknett, Income Volatility
    in the Service Sector: Contours, Causes and Consequences (July 2017) at
    p. 9, available at http://www.aspenepic.org/epic-issues/income-
    volatility/issue-briefs-what-we-know/issue-brief-income-volatility-
    service-sector/(almost a quarter of consumers reporting week-to-week
    volatility report using payday lenders).
    ---------------------------------------------------------------------------
        LIHEAP protects the health and safety of the frail elderly, the
    very young, and those with chronic health conditions that increase
    susceptibility to temperature extremes. LIHEAP is an administratively
    efficient and effective targeted health and safety program that works
    to bring fuel costs within a manageable range for vulnerable
    households.
        For the reasons discussed in this testimony, we anticipate an
    unprecedented need for fiscal year 2021 LIHEAP funding. We respectfully
    request that the subcommittee fund LIHEAP at $5.1 billion for fiscal
    year 2021 and note that the need is likely to be even greater.

        [This statement was submitted by Olivia Wein, Staff Attorney,
    National
    Consumer Law Center.]
                                     ______

         Prepared Statement of the National Council of Social Security
                            Management Associations
        On behalf of the National Council of Social Security Management
    Associations (NCSSMA), thank you for the opportunity to submit this
    testimony regarding the Social Security Administration's (SSA's) fiscal
    year 2021 Appropriation. NCSSMA respectfully requests that Congress
    provide at least $13.904 billion in fiscal year 2021 for SSA's
    Limitation on Administrative Expenses (LAE) account. SSA's LAE account
    provides resources for general operations, continued support for much-
    needed Information Technology (IT) modernization and reducing the
    disability hearings backlog. While previous funding has certainly
    helped improve service to the American public, SSA must still replace
    frontline staff to address field office backlogs, answer telephones,
    and assist those who request our help. This level of funding will help
    ensure the agency can continue to build on the improvements currently
    underway.
        We recognize the current fiscal constraints facing legislators, but
    we are concerned that the enacted level of $12.871 billion for SSA for
    fiscal year 2020 was slightly below the fiscal year 2019 enacted level
    of $12.877 billion. In contrast, for fiscal year 2020, NCSSMA had
    recommended an increase of at least $640 million over the fiscal year
    2019 funding level to ensure progress continues in the areas listed
    below. This included an additional $300 million to improve frontline
    services and increase hiring in SSA field offices, $240 million to
    address hearing office and program service center backlogs, and $100
    million to continue the agency's efforts in modernizing its systems
    infrastructure and software.

        The President's fiscal year 2021 budget request includes $13.351
    billion for SSA's administrative expenses. As part of the fiscal year
    2021 Budget Appendix, the Commissioner of Social Security expressed the
    following resource needs in fiscal year 2021:

        ``... The Commissioner's budget includes $14,004 million for total
            administrative discretionary resources in 2021. This represents
            $13,804 million for SSA administrative expenses, $79 million in
            research, and $121 million for the Office of the Inspector
            General.''

        We are gravely concerned that the current coronavirus crisis and
    its accelerating threat to the health, economic security and well-being
    of our nation will have an untold negative impact on not only those
    seeking assistance from our agency, but on our own staff and their
    loved ones as well. NCSSMA appreciates that the CARES Act included $300
    million for SSA's LAE account to prevent, prepare for and respond to
    the coronavirus. This funding will help ensure our agency can continue
    its mission during these unprecedented times. Because of the many
    unknowns associated with COVID-19, our request includes an additional
    $100 million above the Commissioner's budget request to support field
    office and teleservice telework and the processing of critical work
    during a crisis that is estimated to affect the American public and SSA
    well into fiscal year 2021.
                            community-based service
        Adequate resources for SSA positively affect the agency's ability
    to deliver vital services to the American public and fulfill the
    agency's stewardship responsibilities. The following are examples of
    why it is vital SSA receives adequate resources, in a timely manner, to
    provide excellent service in its field offices:

        Earlier this year, our office had two Supplemental Security Income
            (SSI) recipients walk into our office looking for assistance.
            Both individuals were homeless and from outside our service
            area. They had no idea where to go for help and, in both cases,
            had no money, and did not know where they were going to spend
            the night. It was too late in the day to get them on a bus to
            our local Department of Social Services (DSS). Our staff made
            phone calls to various community agencies, found both
            individuals a place to sleep for the night, and arranged for
            transportation to the DSS office the next morning. These two
            individuals would have spent the night in the cold and on the
            street if we had not been here to assist.--Ogdensburg, NY

        A transient man arrived in the office near closing during a severe
            rainstorm. He came into the office requesting to file for
            disability benefits. Upon further development, it was
            discovered that the man had terminal colon cancer. The man was
            then referred to a CS where his claim was taken and completed
            after we closed to the public. During the interview, the man
            mentioned to the CS that he did not have any place to stay for
            the night. In addition to getting the claim off to DDS, the CS
            contacted the local Adult Protective Services and we were able
            to find him suitable shelter during the storm.--Ada, OK

        We had a customer who, according to our records, had filed for
            retirement in 2013. She received a letter that her Direct
            Express card was being canceled and became alarmed. She
            recalled signing up neither for benefits or receiving a check,
            nor was she in possession of a Direct Express card. Our
            employee reviewed the record, contacted Direct Express, and
            found out 6 years of benefits, approximately $50,000, was
            sitting untouched on her Direct Express card. The employee was
            able to retrieve the funds for our customer. The customer truly
            appreciated our help and said that we ``made her Christmas''.
            Having adequate staff allows employees to serve the public and
            take the time to investigate this unusual situation and resolve
            it without sacrificing service to the other 200 people, on
            average, that our office serves in person daily.--Spokane, WA

        While we understand the budget constraints facing legislators, when
    SSA's administrative resource needs are unmet, it results in
    deterioration in key service areas and stewardship workloads. SSA
    continues to experience a large number of customers requesting
    assistance from field offices as members of the baby boom generation
    retire or become disabled. In fiscal year 2019, the national 800 number
    call center and field offices handled over 48 million calls from the
    public. Meanwhile, over 14 percent of callers received a busy signal in
    our teleservice centers and over 6 million calls went unanswered in the
    field. In fiscal year 2019, the national 800 number call wait time was
    20 minutes. In addition to the almost 90 million face-to-face and
    telephone contacts made last year, the agency continues to have over 5
    million actions pending in the program service centers. As of May 1,
    2020, there were 455,304 hearings pending, down from 575,421 at the end
    of fiscal year 2019. Disabled individuals are waiting an average of 404
    days for a hearing, down from 506 just 8 months ago. The additional
    resources provided in fiscal year 2018 and fiscal year 2019 have cut
    the number of pending hearings by more than half since fiscal year 2016
    and reduced the average processing time by 201 days. These are positive
    steps, but progress must continue to be made. We must not lose sight of
    the fact that those filing for disability have conditions that worsen
    over time, without adequate treatment, and many experience financial
    hardship as they wait more than a year to have their case heard in
    front of an Administrative Law Judge. If SSA's administrative funding
    is not adequate, these backlogs will remain, and public service levels
    will continue to be compromised.
                            fiscal year 2021 funding
        Resource allocations in fiscal year 2021 must be sufficient to
    address deficit-reducing program integrity work, as well as the massive
    hearings backlog, increases in other workloads, visitors, and telephone
    calls in field offices and to the national 800 number. In addition,
    resources are also necessary to advance SSA's ongoing Information
    Technology (IT) Modernization project that will significantly enhance
    the agency's systems and improve productivity.
        To ensure a long-term solution, NCSSMA strongly believes that we
    must explore mechanisms for creating a more robust and predictable
    funding stream for SSA's administrative expenses. NCSSMA recommends
    and/or endorses the following: exclude SSA's administrative funding
    from any cap that sets an arbitrary ceiling on discretionary spending;
    remove SSA's administrative funding from the discretionary budget caps
    and provide a separate limit in the Budget Resolution; establish multi-
    year funding for critical systems investments and expenditures; and
    expand the definition of program integrity funding to include critical
    systems investments and expenditures that facilitate completion of
    program integrity initiatives.
                                   conclusion
        NCSSMA respectfully requests that Congress provide adequate funding
    for the Social Security Administration's (SSA) fiscal year 2021
    administrative funding needs. We respectfully request that Congress
    consider funding of at least $13.904 billion for SSA's administrative
    expenses to ensure progress continues to be made in addressing the
    disability hearings backlog, the agency's IT modernization efforts and
    additional resources for frontline services in SSA's field offices and
    teleservice centers. Our request includes the Commissioner's budget
    request of $13.804 billion and at least $100.0 million towards
    continued efforts related to the coronavirus crisis and its
    accelerating threat to the health, economic security and well-being of
    our nation. In addition, NCSSMA respectfully requests that Congress
    explore mechanisms for creating a more robust and predictable funding
    stream for SSA's administrative expenses. SSA must have the necessary
    resources and front-line staffing to provide quality service to the
    American public. This includes addressing program integrity workloads
    that reduce improper payments and save taxpayer dollars. SSA must
    continue investments in IT modernization that will improve quality and
    efficiency and help address the high volumes of initial claims and
    post-entitlement work.

        [This statement was submitted by Peggy Murphy, President, National
    Council of Social Security Management Associations.]
                                     ______

       Prepared Statement of the National Family Planning & Reproductive
                               Health Association
        Chairman Blunt, Ranking Member Murray, and Subcommittee Members:
        As the chief executive officer of the National Family Planning &
    Reproductive Health Association (NFPRHA), I thank you for this
    opportunity to provide testimony in support of increased Title X
    funding and critical program language in the fiscal year 2021
    appropriations bill. I am deeply concerned by the administration's
    continued attacks on the integrity of the Title X program, as
    demonstrated by the devastating rule that the Department of Health and
    Human Services finalized in 2019.\1\ Today, more than one million
    people no longer have access to Title X-supported services at the
    health center they used in 2018 due to the rule. I urge Congress to use
    the fiscal year 2021 Labor, Health and Human Services, Education, and
    Related Agencies appropriations bill to make a strong statement in
    support of high-quality, evidence-based, and patient-centered family
    planning care and against the Title X rule by including language to
    block the rule and reverse the damage done in communities across the
    country. With that language in place, we urge Congress to appropriate
    $400 million for the program, the funding level the House proposed in
    fiscal year 2020.
    ---------------------------------------------------------------------------
        \1\ Department of Health and Human Services. Final Rule.
    ``Compliance with Statutory Program Integrity Requirements.'' Federal
    Register 84 (March 4, 2019): 7714-7791.
    ---------------------------------------------------------------------------
        NFPRHA is a non-partisan 501(c)3 membership association that
    advances and elevates the importance of family planning in the nation's
    healthcare system and promotes and supports the work of family planning
    providers and administrators, especially in the safety net.
    Representing close to 1,000 members that operate or fund more than
    3,500 health centers in the United States, NFPRHA conducts and
    participates in research; provides educational subject matter expertise
    to policy makers, healthcare providers, and the public; and offers its
    members capacity-building support aimed at maximizing their
    effectiveness and financial sustainability as providers of essential
    healthcare. Prior to the grantee shifts caused by the 2019 Title X
    rule, NFPRHA represented more than 70 percent of Title X grantees and
    more than 90 percent of Title X service sites.
        Title X has served as the nation's sole Federal program dedicated
    to family planning since its inception in 1970, 50 years ago. In 2018,
    Title X helped close to 4 million people access family planning and
    related health services at nearly 4,000 health centers around the
    country.\2\ Title X-funded health centers include a diverse array of
    providers, such as freestanding family planning centers, federally
    qualified health centers, hospitals, school- and university-based
    health centers, and other entities.\3\ For many individuals,
    particularly those who have low incomes, are under- or un-insured, or
    are adolescents, Title X has been their main access point to affordably
    and confidentially obtain contraception, cancer screenings, sexually
    transmitted disease testing and treatment, complete and medically
    accurate information about their sexual health and family planning
    options, and other basic care. In fact, a study found that in 2016, six
    in ten women seeking contraceptive services at a Title X-funded health
    center saw no other healthcare providers that year,\4\ and in 2016
    Title X-supported contraceptive services helped patients prevent an
    estimated 755,000 pregnancies.\5\ In addition to that direct clinical
    care, Title X supports important health center efforts that are not
    reimbursable under Medicaid or private insurance, including staff
    training and community-based sexual and reproductive health education
    programs.
    ---------------------------------------------------------------------------
        \2\ Christina Fowler et al, ``Family Planning Annual Report: 2018
    National Summary,'' RTI International (August 2019). https://
    www.hhs.gov/opa/sites/default/files/title-x-fpar-2018-national-
    summary.pdf.
        \3\ Prior to implementation of the 2019, many Planned Parenthood
    affiliates participated in the program. Planned Parenthood withdrew
    from the program in August 2019.
        \4\ Megan Kavanaugh, Mia Zolna, and Kristen Burke, ``Use of Health
    Insurance Among Clients Seeking Contraceptive Services at Title X-
    Funded Facilities in 2016,'' Perspectives on Sexual and Reproductive
    Health 50.3 (September 2018). https://onlinelibrary.wiley.com/doi/full/
    10.1363/psrh.12061.
        \5\ Jennifer Frost et al, ``Publicly Supported Family Planning in
    the United States: Likely Need, Availability and Impact, 2016,''
    Guttmacher Institute (October 2019). https://www.guttmacher.org/report/
    publicly-funded-contraceptive-services-us-clinics-2015.
    ---------------------------------------------------------------------------
        Despite this compelling data, and in spite of the critical
    importance of equitable access to family planning services for all
    people, the Trump administration pushed forward a rule that has
    decimated the Title X network and made it harder for providers to offer
    high quality, comprehensive preventive services to patients. I urge you
    to include both a prohibition on the rule's implementation and a new
    pathway to allow providers that left the program rather than comply
    with the rule a way to reenter the program and serve the millions of
    patients who rely on them for care. This language is also critical for
    the providers that have remained in the program in order to ensure that
    patients are left with some access to family planning services.
        Furthermore, I urge you to fund the program at $400 million, as the
    House proposed in fiscal year 2020. These funds will allow Title X
    providers to maintain existing services and provide a down payment on
    the resources needed to restore Title X's capacity to serve the
    millions of people who could benefit from its services. As you know,
    Title X has been funded at just over $286 million for the past 7 years.
    In 2016, researchers from the Centers for Disease Control and
    Prevention, the Office of Population Affairs, and George Washington
    University estimated that Title X would need $737 million annually to
    deliver family planning care to all uninsured, low-income women in the
    United States.\6\ This estimate understates the true need for Title X,
    as it does not include an estimate of costs for men (who made up 13
    percent of patients in the network in 20180,\7\ does not address Title
    X's trans and nonbinary patients, and does not include an estimate for
    the insured patients who rely on Title X's confidentiality protections.
    ---------------------------------------------------------------------------
        \6\ Euna August, et al, ``Projecting the Unmet Need and Costs for
    Contraception Services After the Affordable Care Act,'' American
    Journal of Public Health (February 2016): 334-341.
        \7\ Christina Fowler et al, ``Family Planning Annual Report: 2018
    National Summary,'' RTI International (August 2019). https://
    www.hhs.gov/opa/sites/default/files/title-x-fpar-2018-national-
    summary.pdf.
    ---------------------------------------------------------------------------
        The gap between the funds appropriated and the funds needed has
    only grown in recent years. From 2010 to 2016 the number of women who
    needed publicly funded family planning services increased by 1.5
    million,\8\ but Congress cut Title X's funding by $31 million over that
    period. That decrease unfortunately corresponds to dramatic decreases
    in the number of patients served at Title X-funded sites; the numbers
    dropped from 5.22 million in 2010 \9\ to just under four million in
    2018.\10\ NFPRHA and its members are deeply concerned about diminishing
    access to high-quality family planning care and urge Congress to take
    an initial step to reverse this devastating trend by appropriating $400
    million for Title X in fiscal year 2021.
    ---------------------------------------------------------------------------
        \8\ Jennifer Frost, Lori Frohwirth and Mia Zolna, ``Publicly
    Supported Family Planning Services in the United States: Likely Need,
    Availability, and Impact, 2016,'' Guttmacher Institute (October 2019).
    https://www.guttmacher.org/report/publicly-supported-FP-services-US-
    2016.
        \9\ Christina Fowler et al, ``Family Planning Annual Report: 2010
    National Summary,'' RTI International (August 2019). https://
    www.hhs.gov/opa/sites/default/files/title-x-fpar-2018-national-
    summary.pdf.
        \10\ Fowler et al, ``Family Planning Annual Report: 2018 National
    Summary.''
    ---------------------------------------------------------------------------
        The need for the Title X program and its network of providers is
    even more critical as the coronavirus affects communities across the
    country. Family planning and sexual health services are often time-
    sensitive, and the need for these services does not stop during a
    pandemic. In fact, recent public opinion polling shows that a majority
    of US adults (65 percent) think now is a bad time for individuals and
    couples to try to get pregnant, and only 5 percent of adults would
    consider it ``less essential'' for individuals to have that access to
    birth control during the coronavirus pandemic.\11\ Now more than ever,
    the Title X provider network, already struggling in the wake of years
    of attacks and chronic underfunding, needs the robust support of
    Congress to continue to provide high-quality family planning and sexual
    health services.
    ---------------------------------------------------------------------------
        \11\ Morning Consult, on behalf of the National Family Planning &
    Reproductive Health Association (NFPRHA), conducted a poll using a
    national sample of 2,200 U.S. adults, between April 30--May 2, 2020.
    The interviews were conducted online, and the data were weighted to
    approximate a target sample of U.S. adults based on age, educational
    attainment, gender, race, and region. Results from the full survey have
    a margin of error of +/-2 percent.
    ---------------------------------------------------------------------------
        Furthermore, family planning staffing has been impacted at health
    centers due in some instances to employees being redeployed to COVID
    response and because of the individual toll the pandemic has taken on
    staff, including short-term and long-term absences as employees deal
    with health and family issues. Staffing issues coupled with decreased
    patient visits and the likelihood that states will need to cut family
    planning funding in future budgets due to fiscal crisis means that
    current Federal funding for safety-net health centers is simply not
    enough. Access to essential services depends on health centers
    receiving sufficient funds to remain open and programmatic rules that
    allow expert providers to offer the best possible care.
        Thousands of providers and millions of patients are counting on
    Congress to stand strong against attacks on family planning and support
    the Title X program. NFPRHA looks forward to working with committee
    members in those efforts.
        Sincerely.

        [This statement was submitted by Clare M. Coleman, President & CEO,
    National Family Planning & Reproductive Health Association.]
                                     ______

        Prepared Statement of the National Hispanic Medical Association
        Chairman Blunt, Ranking Member Murray, and Members of the
    Subcommittee, I appreciate the opportunity to submit a written
    testimony for the record for the fiscal year 2021 Appropriations for
    Labor, Health and Human Services, Education and Related Agencies. My
    name is Elena Rios, MD, MSPH, FACP and I have served as the President
    and CEO of the National Hispanic Medical Association (NHMA) since 1994.
    NHMA requests assistance, resources, and relations that promote
    improved health outcomes for Hispanics.
        As of July 2016, there are about 57.5 million (17.8 percent) of
    Hispanics in the United States and it is projected to reach 119 million
    by 2060.\1\ However, Hispanics continue to remain underrepresented in
    all disciplines of healthcare professionals. According to the AAMC,
    Hispanic physicians only account to 5.8 percent of the population as
    compared to their White counterpart (56.2 percent).\2\
    ---------------------------------------------------------------------------
        \1\ https://www.census.gov/newsroom/facts-for-features/2017/
    hispanic-heritage.html.
        \2\ https://www.aamc.org/data-reports/workforce/interactive-data/
    figure-18-percentage-all-active-physicians-race/ethnicity-2018.
    ---------------------------------------------------------------------------
        In a 2016 report published by the Office of Personnel Management
    (OPM), Hispanic representation in the Senior Executive Service (SES)
    rose from 4.4 percent to 4.6 percent between 2015 and 2016.\3\ This
    modest increase falls short when compared to Hispanic representation in
    the civilian workforce, which is 15 percent. In addition to the OPM
    findings, the Equal Employment Opportunity Commission (EEOC) found that
    Hispanics are underrepresented in senior positions across the Federal
    Government employment and leave at a faster rate than they are being
    recruited. EEOC also concluded that intentional efforts with national
    stakeholder groups are needed to increase the leadership pipeline in
    areas of critical need such as STEM and healthcare rather than
    internships, which have not resulted in much Federal employment.\4\
    ---------------------------------------------------------------------------
        \3\ https://www.opm.gov/policy-data-oversight/diversity-and-
    inclusion/reports/feorp-2016.pdf.
        \4\ https://www.eeoc.gov/Federal/reports/hwg.html#--Toc471524086c.
    ---------------------------------------------------------------------------
        NHMA recommends providing at least $1 million for the Office of
    Minority Health (OMH) or the Health Resources & Services Administration
    (HRSA) to create a Hispanic Health Leadership Fellowship Program and at
    least $1.5 million for the National Institute on Minority Health and
    Health Disparities (NIMHD) to create a Hispanic Junior Faculty Research
    Accelerator. These two special initiatives will (1) allow the U.S. to
    produce an increased number of qualified health professionals from
    underrepresented communities; (2) increase the sustainable engagement
    of Hispanic health professionals in Federal-funded research programs;
    and (3) provide greater access to healthcare and improve health
    outcomes for members of the Hispanic community. NHMA has submitted
    these special initiative funding requests to Members of the Senate
    Appropriations Committee Subcommittee on Labor, Health and Human
    Services, Education, and Related Agencies and Members of Congress.
        The Hispanic Leadership Fellowship Program's goal is to create a 1
    year training program to engage mid-career Hispanic physicians across
    the nation who are interested in decisionmaking positions the Federal
    Government. The curriculum will include didactic lectures, panels, case
    studies, leadership-skill building, healthcare policy, cultural
    competence, and exchanges with national leaders who direct Federal
    health policy and programs that directly and indirectly affect the
    health and wellness of the Hispanic population. The requested funding
    and report language for this program will address national findings
    related to the underrepresentation and shortage of Hispanic leaders
    within the Federal and state healthcare sectors.
        The Hispanic Junior Faculty Research Accelerator Initiative will
    support NIH and its national efforts to improve health outcomes for
    Hispanics in areas marked by persistent health disparities by
    supporting the training of junior Hispanic researchers and researchers
    who are interested in the Hispanic population. Funding will allow top
    junior faculty candidates from across the United States to participate
    more robustly in NIH-sponsored programs and receive instruction,
    mentoring, and other assistance to develop research competencies.
    Junior researchers will be recruited from medicine and public health
    from across the nation and be matched with senior researchers who have
    experiences with Hispanic health research. This request aligns with the
    work of the Office of the Secretary, NIMHD. Additionally, the
    leadership of the Chief Officer of Scientific Workforce Diversity
    (OSWD) is leading NIH's effort to diversity the national scientific
    workforce and expand recruitment and retention of diverse professionals
    in fields relevant to NIH's mission. OSWD is purposeful in its efforts
    to capture and include diverse talent into biomedical research through
    research innovations and data-driven interventions in diversity
    including policies, processes, and programs. This funding request
    aligns with the work and mission of OSWD and is consisted with the
    recommendations include in the NIH-Wide Strategic Plan for fiscal years
    2016-2020.\5\
    ---------------------------------------------------------------------------
        \5\ https://www.nih.gov/about-nih/nih-wide-strategic-plan.
    ---------------------------------------------------------------------------
        Below are proposed report language for both initiatives:
    Requested Report Language for Hispanic Leadership Fellowship Program:
        Of the funds appropriated, $1 million is provided to support a
    Hispanic Leadership Fellowship Program initiative to support increasing
    the number and advancement of underrepresented persons to senior
    positions at the Federal level and other areas. The Committee
    encourages collaboration with a reputable national nonprofit
    stakeholder organization with a demonstrable history in developing
    Hispanic healthcare leaders.
    Requested Report Language for Hispanic Junior Faculty Research
            Accelerator:
        Of the funds appropriated, $1.5 million is provided to support a
    Hispanic Junior Faculty Research Accelerator initiative to support NIH
    efforts related to scientific workforce diversity and help ensure
    better health outcomes and reduce health disparities affecting the
    Hispanic community, as well as the various subgroups classified as
    Hispanic. NIH is encouraged to work with national Hispanic stakeholder
    groups.
        NHMA believes that these modest requests will help increase
    diversity across Federal and state governments to help address the low
    number of Hispanics in the Federal healthcare workforce and ensure
    better health outcomes and reduce healthcare disparities affecting the
    Hispanic community. The growing number of Hispanics in the country
    shows the further need of more Hispanics in more senior positions who
    are familiar with the Hispanic population and can be culturally-
    sensitive when putting together policies who will affects millions.
    Strong Federal investments in a Hispanic Leadership Fellowship Program
    and a Hispanic Junior Faculty Research Accelerator Program are crucial
    to increase the representative of Hispanic physicians, caregivers,
    clinicians and researchers in health services research. These programs
    will provide to our nation's healthcare workforce the foundation
    necessary to tackle the challenges we are currently facing.
        We look forward to working with you to improve the health of all
    Hispanics in the country.

        [This statement was submitted by Elena Rios, MD, MSPH, FACP,
    President & CEO, National Hispanic Medical Association.]
                                     ______

      Prepared Statement of the National Indian Child Welfare Association
        The National Indian Child Welfare Association (NICWA), located in
    Portland, Oregon, has over 35 years of policy experience advocating on
    behalf of American Indian and Alaska Native (AI/AN) children in child
    welfare and children's mental health systems. Thank you for the
    opportunity to provide fiscal year 2021 budget recommendations for
    child welfare and children's mental health programs administered by the
    Department of Health and Human Services (DHHS). Our full
    recommendations appear in the charts below with our priority
    recommendations described in more detail underneath the charts.

                            priority recommendations
        Promoting Safe and Stable Families recommendation (Title IV-B,
    Subpart 2-Discretionary Portion): Increase mandatory funding to $450
    million and $120 million for discretionary funding under this program
    to provide additional access to tribes who are currently not eligible
    to apply for these funds based upon the current eligibility criteria
    that are tied to the funding formula, and increase tribal court
    improvement funding to $5 million.
        The Promoting Safe and Stable Families Program provides funds to
    tribes for coordinated child welfare services that include family
    preservation, family support, family reunification, and adoption
    support services. This program has a mandatory capped entitlement
    appropriation as well as a discretionary appropriation. There is a 3
    percent set-aside for tribes under each program. All tribes with
    approved plans are eligible for a portion of the set-aside that is
    equal to the proportion of their member children compared to the total
    number of member children for all tribes with approved plans. Based on
    this formula, tribes who would qualify for less than $10,000 are not
    eligible to receive any funding. This means that many tribes, typically
    those tribes that are most in need, cannot access it because the
    overall appropriation is currently too low. Out of the 573 federally
    recognized tribes, over 100 tribes have no access to these funds.
        Tribal systems endeavor to reduce out-of-home placements whenever
    possible, saving children and their families additional trauma and
    helping states with services to Native families under their
    jurisdiction. Native children in state child welfare systems are three
    times more likely to be removed from their homes-as opposed to
    receiving family preservation services-than their non-Native
    counterparts.\1\ Tribes are providing intensive family preservation and
    family reunification services in spite of inadequate funding and
    insufficient staffing, which is putting incredible strain on individual
    workers and programs.\2\ New prevention services funding under Title
    IV-E will help a small portion of tribes, typically those that already
    receive Promoting Safe and Stable Funding, but many smaller tribes do
    not have access to Title IV-E and rely on these kinds of funds to
    reduce out of home placements and stabilize families.
    ---------------------------------------------------------------------------
        \1\ Hill, R. B. (2008). An analysis of racial/ethnic
    disproportionality and disparity at the national, state, and county
    levels (p. 9). Seattle, WA: Casey Family Programs, Casey-CSSP Alliance
    for Racial Equity in Child Welfare, Race Matters Consortium Westat.
        \2\ National Child Welfare Resource Center for Tribes. (2011).
    Findings from the national needs assessment of American Indian/Alaska
    Native child welfare programs (p. 23). Retrieved from nrc4tribes.org/
    files/NRCT%20Needs%20Assessment%20Findings_APPROVED.pdf.
    ---------------------------------------------------------------------------
        The Promoting Safe and Stable Families Program offers support for
    culturally based services that tribes already have experience with,
    such as parenting classes, home visiting services, and respite care for
    caregivers of children. This program is vital to the tribes that depend
    on it to support efforts to prevent the unnecessary removal of AI/AN
    children from their homes.
        Tribes are also eligible to apply for the Tribal Court Improvement
    Program, a competitive grant program authorized under Promoting Safe
    and Stable Families for states and tribes. A $1 million tribal set-
    aside was created in the 2011 Child and Family Services Improvement and
    Innovation Act, Public Law No. 112-34 (2011). Seven tribal court
    improvement project grantees are currently funded under this program.
    They are using these funds to strengthen their family courts and better
    integrate the work of their courts with their child welfare systems and
    with their state court partners who serve Native children and families
    under their jurisdiction.
        Title IV-E Prevention Services Program: Extend DHHS cultural
    evidence-based guidance related to directly funded tribes under Title
    IV-E Prevention Services Program to tribes operating the Title IV-E
    Prevention Services Program through an agreement with a state.
        The President's fiscal year 2021 budget proposal (DHHS fiscal year
    2021, Administration for Children and Families, Justification of
    Estimates for Appropriation Committees, page 311) proposes to extend
    earlier issued guidance that provided tribes in Title IV-E agreements
    with states the same level of flexibility to utilize culturally-based
    services under the Title IV-E Prevention Services Program. This
    proposal does not require additional expenditure of Federal funds and
    is a reasonable extension of the previously issued guidance for tribes
    (see ACYF-CB-PI-18-10). Currently only 10 tribes are operating the
    Title IV-E program directly from the Federal Government while over 130
    tribes are operating the Title IV-E program in an agreement with a
    state. The current guidance only provides authority to the small number
    of tribes operating the Title IV-E program directly through the Federal
    Government to establish and utilized cultural services. Not only have
    many tribes asked for this application to tribes in agreements with
    states, but also several states that have Title IV-E agreements with
    tribes. Extending the guidance to a larger number of Title IV-E tribes
    will have the benefit of supporting more effective services and assist
    states that are working to improve outcomes for Native children and
    families in partnership with tribes.

                            priority recommendations
        Programs of Regional and National Significance, Children and Family
    Programs (includes Circles of Care): Ensure that $8 million under this
    line item continues to be reserved specifically for the tribal and
    urban Indian community Circles of Care program in fiscal year 2021.
        The Children and Family Programs under Programs of Regional and
    National represents funds allocated to support the tribal Circles of
    Care program. Circles of Care is a competitive grant program
    exclusively for tribal communities. It is the cornerstone of tribal
    children's mental health programming.
        Circles of Care is a three-year planning grant that helps
    communities design programs to specifically serve AI/AN children with
    serious behavioral health issues. Specifically, Circles of Care funds
    the development of the tribal capacity and infrastructure necessary to
    support a coordinated network of holistic, community-based, mental and
    behavioral health interventions in tribal communities.
        Circles of Care is one of only two SAMHSA programs that allow
    tribes and tribal organizations to apply for funding without competing
    with other governmental entities (states, counties, or cities). There
    are currently 14 communities receiving Circles of Care funding.
        AI/AN children and youth face a ``disproportionate burden'' of
    mental health issues while simultaneously facing more barriers to
    quality mental healthcare.\3\ Since its inception in 1998, the Circles
    of Care program has affected 49 different tribal and urban Indian
    communities. These programs have been incredibly successful. The
    majority of tribes who have received these grants have created long-
    term, sustainable systems of care for their children.
    ---------------------------------------------------------------------------
        \3\ American Psychiatric Association. (2010). Mental health
    disparities factsheet: American Indians and Alaska Natives (p. 4).
    ---------------------------------------------------------------------------
        Children's Mental Health Initiative (Systems of Care): Increase
    funding to $135 million to allow for continued support of the current
    four-year grantees and funding of new grantees in fiscal year 2021.
        The children's mental health initiative supports the development of
    comprehensive, community-based ``systems of care'' for children and
    youth with serious emotional disorders. This includes funding for 1
    year System of Care Expansion Planning Grants, four-year System of Care
    Expansion Implementation Grants, and six-year Children's Mental Health
    Initiative System of Care Grants. AI/AN communities are eligible for,
    and recipients of, each of these grants, but must compete with non-
    tribal applicants to receive these funds.
        Children's Mental Health Initiative System of Care Grants support a
    community's efforts to further plan and implement strategic approaches
    to mental health services. These approaches are based on important
    principles: they must be family-driven; youth-guided; and meet the
    intellectual, emotional, cultural, and social needs of children and
    youth. Since 1993, 180 total projects have been funded, dozens of which
    have been in tribal communities. Currently, 12 tribal communities are
    funded.
        Evaluation studies of System of Care have indicated return on
    investment from cost-savings in reduced use of in-patient psychiatric
    care, emergency room care, and residential treatment even when other
    community- or home-based care is provided. There are also cost savings
    from decreased involvement in juvenile justice systems, fewer school
    failures, and improved family stability.\4\
    ---------------------------------------------------------------------------
        \4\ Stroul, B. (2015). Return on investment on System of Care for
    children with behavioral health challenges: A look at wraparound. The
    TA Telescope, 1(2), pp. 1-2.
    ---------------------------------------------------------------------------
        Programs of Regional and National Significance, Tribal Behavioral
    Health Program: Increase funding for the Tribal Behavioral Health
    program (mental health and substance abuse prevention programs) to $60
    million in fiscal year 2021.
        In the fiscal year 2020, the Tribal Behavioral Health Grants were
    funded at $40 million ($20 million in the Mental Health appropriation
    and $20 million in the Substance Abuse Prevention appropriation). NICWA
    recommends $60 million in fiscal year 2021 to continue to address the
    expansion of suicide prevention, mental health, and substance abuse
    activities for Native communities.
        These are competitive grants designed to target tribal entities
    with the highest rates of suicide per capita over the last 10 years.
    These funds must be used for effective and promising strategies to
    address the problems of substance abuse and suicide and promote mental
    health among AI/AN young people.
        AI/AN young people are more likely than other youth to have an
    alcohol use disorder. In 2007, 8.5 percent of all AI/AN youth struggled
    with alcohol use disorders compared to 5.8 percent of the general youth
    population.\5\ Although these statistics are troubling, with adequate
    resources tribes are best able to serve these young people and help
    them heal before they reach adulthood.
    ---------------------------------------------------------------------------
        \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.
    ---------------------------------------------------------------------------
        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.
    ---------------------------------------------------------------------------
        \6\
        \6\ Novins, D. K., & Bess, G. (2011). 10. Systems of mental
    healthcare for American Indian and Alaska Native children and
    adolescents. In P. Spicer, P. Farrell, M. C. Sarche, & H. E. Fitzgerald
    (Eds.), American Indian and Alaska Native children and mental health:
    Development, context, prevention, and treatment. Santa Barbara, CA:
    SABC-CLIO, LLC.
    ---------------------------------------------------------------------------
                                     ______

             Prepared Statement of the National Indian Health Board
        Chairman Blunt, Ranking Member Murray, and Members of the
    Subcommittee, thank you for the opportunity to offer this testimony. On
    behalf of the National Indian Health Board (NIHB) and the 574 Tribal
    Nations we serve, I submit this testimony for the record on the fiscal
    year 2021 budget for the Department of Health and Human Services (HHS).
    NIHB thanks the Committee for maintaining funding levels for Tribal
    programs within the fiscal year 2020 Labor-HHS Appropriations Act.
    These included a $50 million set aside for Tribal Opioid Response (TOR)
    grants; $21 million for Good Health and Wellness in Indian Country
    (GHWIC); and $40 million for Tribal Behavioral Health Grants. NIHB also
    greatly appreciates the Tribal set-aside in relief packages addressing
    COVID-19, including a baseline $125 million set aside in Centers for
    Disease Control and Prevention (CDC) funds through the CARES Act.
        Since the earliest days of the Republic, all branches of the
    Federal Government have acknowledged the nation's constitutional
    obligations to Tribal Nations and the special trust obligation of the
    United States government to Tribal governments. Congress affirmed this
    special relationship with Tribes in the fiscal year 2019 Labor, Health
    and Human Services, Education, and Related Agencies (Labor-HHS)
    Committee report when it stated ``...Indian Tribes are political,
    sovereign entities to which the Federal Government owes a trust
    responsibility. Congress has routinely codified this relationship, most
    notably in the provision of healthcare by establishing a health system
    for Tribal populations exclusively.'' \1\
    ---------------------------------------------------------------------------
        \1\ Fiscal Year 2019 House Labor-HHS Committee Report.
    ---------------------------------------------------------------------------
        Unfortunately, the COVID-19 pandemic has exacerbated the existing
    structural challenges facing the Indian health system. Unlike state and
    local governments, Tribes do not have a local tax base to supplement
    public health funding. In addition, Tribes are routinely left out of
    larger public health funding streams, partly because it is erroneously
    assumed that Tribes will receive adequate state funding. Not only is
    this factually inaccurate, it runs afoul of the Federal obligation to
    fully fund health services in Indian Country, and the government to
    government relationship that exists in perpetuity between Tribal
    Nations and the United States.
        Indeed, many Tribes lack critical public health infrastructure
    entirely--including for emergency preparedness and response, disease
    surveillance, preventive health services, and so forth. It is important
    to note that Tribes receive hardly any public health funding from the
    Indian Health Service (IHS), because IHS is primarily a healthcare
    delivery system. This means that the small pools of Federal public
    health funds Tribes receive represent the vast majority of available
    Tribal public health funds.
        All Federal public health programs should not only include Tribes
    as eligible entities, but also include direct Tribal funding set-
    asides. Tribal set-asides further the fulfillment of the Federal trust
    obligation for health; but also, without a set-aside, Tribes will more
    than likely not receive meaningful public health funding. Many Tribal
    public health departments do not have the capacity to compete with
    state and local governments for competitive public health grants. The
    consequence is that Tribes are routinely left behind in development of
    public health infrastructure.
        For instance, a 2019 U.S. Department of Health and Human Services
    report found that, from fiscal year 2014 to fiscal year 2018, Tribes
    received 0.06 percent of funds under the Preventive Health and Health
    Services Block Grant ($0.5 million out of $729.2 million). During that
    same time period, Tribes received only 0.03 percent of all Substance
    Abuse Prevention and Treatment Block Grant dollars ($3 million out of
    $8.8 billion). These are just two examples of how Tribes are largely
    left behind when direct Tribal set-asides do not exist in statute.
    Thus, we strongly urge that the Committee work to increase the number
    of direct Tribal set asides for public and behavioral health programs.
                centers for disease control and prevention (cdc)
        Preventive Health and Health Services Block Grant (PHHSBG): Tribal
    public health infrastructure and capacity is significantly lower than
    that of states and counties, because Tribes were left behind during the
    nation's development of its public health infrastructure. As a result,
    Tribal health systems generally lack the capacity to conduct robust
    disease surveillance and tracking, engage in preparedness and disaster
    relief efforts, and provide comprehensive preventive health services.
    While only two Tribes receive a small portion of these funds, it is
    vital that this program be maintained and its reach in Indian Country
    expanded. NIHB requests that, in fiscal year 2021, Congress maintain
    PHHSBG funding at its currently enacted level and provide a direct,
    annual set aside of 5 percent for Tribes and Tribal organizations.
        Good Health and Wellness in Indian Country (GHWIC): The GHWIC
    program is CDC's single largest investment in Indian Country. The
    program funds a total of 35 Tribes and Tribal organizations to improve
    chronic disease prevention efforts, expand physical activity, and
    reduce commercial tobacco use. NIHB is thankful to the Committee for
    including a $5 million increase to GHWIC for fiscal year 2019. However,
    the fiscal year 2021 President's Budget proposes elimination of this
    program for the third year in a row. NIHB requests that the Committee
    reject elimination of GHWIC and increase funding to $32 million for
    fiscal year 2021.
        Funding for HIV, Viral Hepatitis, and Sexually Transmitted
    Infections: Tribal communities are disproportionately impacted by HIV,
    viral hepatitis, and sexually transmitted infections (STIs). According
    to the CDC, rates of new HIV infections increased by 81 percent among
    gay and bisexual AI/AN men from 2010 to 2016,\2\ while AI/ANs continue
    to have the highest Hepatitis C mortality rates nationwide at 10.8
    deaths per 100,000 in 2016.\3\ Furthermore, gonorrhea rates among AI/
    ANs are 4.5 times higher than for Whites, while rates of chlamydia and
    syphilis are 2.7 and 2.1 times higher respectively.\4\ Nevertheless, in
    fiscal year 2018, no Tribe or Tribal organization received STI or viral
    hepatitis prevention grants from CDC, and only two community-based
    organizations serving AI/ANs received HIV dollars. The fiscal year 2021
    Budget Request includes a new $1.5 billion investment in CDC to further
    the President's announcement of ending the HIV epidemic by 2030. NIHB
    requests that the Committee provide direct 5 percent set asides in HIV,
    viral hepatitis, and STI funding for Tribes and Tribal organizations.
    ---------------------------------------------------------------------------
        \2\ CDC. (2019). HIV and American Indians and Alaska Natives.
    Retrieved from https://www.cdc.gov/hiv/pdf/group/racialethnic/aian/cdc-
    hiv-aian-fact-sheet.pdf.
        \3\ CDC. Surveillance for Viral Hepatitis: United States, 2016.
    Retrieved from https://www.cdc.gov/hepatitis/statistics/
    2016surveillance/commentary.htm.
        \4\ CDC. Sexually Transmitted Disease Surveillance, 2017. Retrieved
    from https://www.cdc.gov/std/stats17/natoverview.htm.
    ---------------------------------------------------------------------------
       substance abuse and mental health services administration (samhsa)
        Substance Abuse Prevention and Treatment Block Grant (SABG): The
    SABG is one of two major block grants administered by SAMHSA, the other
    being the Community Mental Health Services Block Grant (MHBG). Tribes
    are not eligible to receive MHBG grants, which contributes to the
    dearth of mental health services available within Tribal communities.
    While all 50 states, the District of Columbia, and eight U.S.
    territories receive SABG funding, only 1 Tribe is included. Increasing
    Tribal access to SABG is critical towards building Tribal behavioral
    health capacity and reducing Tribal behavioral and mental health
    disparities. NIHB requests that the Committee set aside SABG funding
    for Tribes and Tribal organizations and work with authorizing
    committees to extend eligibility for MHBG funding to Tribes.
        Tribal Behavioral Health Grants: NIHB was pleased to see both the
    mental health and substance abuse TBHGs increased to $20 million each
    for fiscal year 2019 ($40 million total). These two Tribally-focused
    programs have created over 140 unique projects in Indian Country
    addressing a wide variety of mental and behavioral health needs, and
    have helped many Tribes address chronic shortages in mental and
    behavioral health services. NIHB requests that the Committee double
    funding for the TBHG program to $80 million total, and that SAMHSA
    engage in Tribal consultation on restructuring the program to be
    formula-based with the option for Tribes to apply for funding under 638
    self-governance authority.
        Opioid Funding: NIHB was pleased to see that the $50 million set
    aside for TOR grants and a $10 million set aside for medication-
    assisted treatment was maintained in fiscal year 2020. With the COVID-
    19 pandemic triggering increases to substance use and overdose death
    rates, and with AI/ANs experiencing the second highest overall opioid
    overdose death rates, dedicated funding to Tribes for prevention and
    treatment is essential. NIHB requests that the Committee double the
    Tribal opioid funding set aside to 10 percent for fiscal year 2021 so
    that more Tribes can participate and existing grantees can expand the
    scope and delivery of services.
                  health resources and services administration
        Health Workforce: As reported by IHS in its fiscal year 2021
    Congressional Justification, the Indian health system currently has
    1,330 vacancies for healthcare professionals including physicians,
    nurse practitioners, dentists, pharmacists, and physician
    assistants.\5\ In fact, in a 2018 report released by the Government
    Accountability Office (GAO), provider vacancy rates across eight IHS
    Areas with substantial direct care responsibilities reached as high as
    31 percent (GAO-18-580).\6\ Without sufficient access to providers, the
    quality and accessibility of care in the Indian health system will not
    improve, and the health status of AI/ANs will remain lower than the
    general population. NIHB urges that the Committee maintain its $15
    million set aside in NHSC funding for placements within the Indian
    health system and reject language in the fiscal year 2021 President's
    Budget declaring the set-aside unnecessary.
    ---------------------------------------------------------------------------
        \5\ Fiscal Year 2021 Justification of Estimates for Appropriations
    Committees: Indian Health Service.
        \6\ Government Accountability Office. (2018). Indian Health
    Service: Agency Faces Ongoing Challenges Filling Provider Vacancies.
    ---------------------------------------------------------------------------
        Health Centers: In addition to chronic provider shortages, the
    average age of I/T/U facilities is roughly 40 years, compared to an
    average age of roughly 10 years for health facilities nationwide.\7\ In
    fact, research shows that an IHS facility built today would not be
    replaced for 400 years in the current budget environment.\8\ IHS and
    Tribal health systems generally lack access to specialty care
    facilities, preventive health centers, behavioral and mental health
    clinics, and so forth. Despite the need, only 1.1 percent of patients
    served by HRSA's health center program were AI/AN in 2017. Out of 1,375
    health center nationwide, only about 22 are Tribally operated. Direct
    access to health center funding can help improve Tribal health
    infrastructure by expanding funding for health services. As such, NIHB
    requests that the Committee enact a 3-4 percent set aside in Health
    Center funding for the I/T/U system.
    ---------------------------------------------------------------------------
        \7\ The 2016 Indian Health Service and Tribal Health Facilities'
    Needs Assessment Report to Congress. Retrieved from https://
    www.ihs.gov/newsroom/includes/themes/responsive2017/display_objects/
    documents/RepCong_2016/IHSRTC_on_FacilitiesNeedsAssessmentReport.pdf.
        \8\ Ibid.
    ---------------------------------------------------------------------------
        Action for Dental Health Program: Nationwide, Tribal communities
    struggle with dental afflictions and disparities, as well as a severe
    oral health provider shortage. On average, Indian Country has just 1
    dentist for every 2,800 people, which is half the number of dentists
    per capita nationwide. This shortage contributes to poorer oral health
    outcomes across all age groups in Tribal communities. In fact, 41
    percent of AI/AN 2-5 year olds and 46 percent of AI/AN adults over the
    age of 65 have untreated tooth decay, compared to 10 percent and 19
    percent of non-Natives in the same age groups.\9\ As one of the many
    policy solutions to restore Indian Country's oral health, NIHB supports
    funding for the Action for Dental Health Program (42 U.S.C. 280k(c)),
    which includes direct funding to Tribes. NIHB recommends the Committee
    appropriate such sums as may be necessary--including a designated
    funding set aside for Tribes--for the implementation of the Action for
    Dental Health Program in fiscal year 2021.
    ---------------------------------------------------------------------------
        \9\ Phipps and Ricks, April 2015; Bruce A. Dye, Gina Thornton-
    Evans, Xianfen Li, and Timothy J. Iafolla, NCHS Data Brief No. 191,
    ``Dental Caries Sealant Prevalence in Children and Adolescents in the
    United States, 2011-2012,'' March 2015, http://www.cdc. gov/nchs/data/
    databriefs/db191.pdf.
    ---------------------------------------------------------------------------
        Centers for Medicare and Medicaid Services: The Medicaid system is
    a critical lifeline in Tribal communities, accounting for roughly 13
    percent of the overall IHS budget. Moving Medicaid to a block grant
    system, as proposed in the fiscal year 2021 President's Budget, would
    have major fiscal impacts on Tribal health reimbursements. We also urge
    Congress to ensure that AI/ANs are exempt from any mandatory work
    requirements under Medicaid, as they would impose additional and
    unmanageable burdens on an IHS budget that heavily relies on Medicaid
    resources to make up for funding shortfalls. NIHB urges the Committee
    to maintain the Medicaid program as is, and expand its reach and
    availability for AI/ANs.
        Expansion of Self-Governance at HHS: For over a decade, Tribes have
    been advocating for expansion of self-governance authority to HHS
    programs outside of IHS. Self-governance represents efficiency,
    accountability and best practices in managing and operating Tribal
    programs and administering Federal funds at the local level. This
    proposal was deemed feasible by a Tribal/Federal HHS workgroup in 2011.
    Therefore, NIHB requests the Committee direct HHS to enter into pilot
    projects for self-governance in fiscal year 2021.
        Thank you for the opportunity to submit testimony on the fiscal
    year 2021 HHS budget. We thank the Committee for its efforts towards
    prioritizing funding to Indian Country. Please do not hesitate to
    contact our offices directly if you have any questions or if you
    require additional information.

        [This statement was submitted by Victoria Kitcheyan, National
    Indian Health Board.]
                                     ______

         Prepared Statement of the National Institute of Mental Health
        I appreciate the opportunity to provide written testimony on the
    National Institute of Health fiscal year 2021 budget appropriations.
        The National Institute of Mental Health (NIMH) is the main Federal
    Government agency for research into mental illness. The NIMH was
    authorized through the passage of the National Mental Health Act in
    1946 to better help individuals with mental health disorders through
    better diagnosis and treatments. With a budget of almost $2 billion in
    2020, the NIMH conducts research and funds outside investigators to
    better understand mental illness and develop new treatments to reduce
    the burden these disorders have on individuals.
        Unfortunately, the NIMH has a recent history of ignoring those with
    the most severe mental illnesses. As Treatment Advocacy Center Founder
    Dr. E. Fuller Torrey wrote in Psychiatric Times earlier this month:

        ``Congress awarded the National Institute of Mental Health an
            additional $98 million as part of the National Institutes of
            Health budget resolution in December 2019, which brings the
            NIMH budget to just under $2 billion and represents a 35
            percent increase since 2015, one of the largest increases in
            the history of the NIMH. Yet, during the 5 years from 2015
            through 2019, NIMH funded a total of 2 new drug treatment
            trials for schizophrenia and bipolar disorder, according to
            clinicaltrials.gov. This contrasts with the 5-year period from
            2006 through 2010 when NIMH funded 48 such trials. NIMH has
            thus almost entirely given up its role of evaluating drugs for
            the treatment of 2 disorders (emphasis added).''
        In December 2019, the NIMH released a draft of their five-year
    strategic plan for public comment. They reported receiving more than
    6,000 responses over the winter holidays, including from our
    organization identifying concrete examples of research initiatives the
    NIMH could be pursuing today to help people with serious mental illness
    recover and live better lives. Despite this robust response, NIMH made
    no substantive changes to the research goals or objectives in the final
    version released to the public earlier this week.
        The NIMH research goals for 2020-2025 heighten the existing
    imbalance in NIMH research. In doing so, they offer little hope for new
    or better treatments for individuals who are currently afflicted with a
    mental illness during their lifetime, especially a serious mental
    illness. This failure is inexcusable given the large increase in
    research funding given to NIMH in recent years.
        Future NIMH funding must be used to correct the existing imbalance,
    not worsen it, especially now that the COVID-19 pandemic has upended
    the mental health treatment system and will likely result in an
    exacerbation of symptoms in people currently affected and an increase
    in serious mental illnesses among Americans. Those with the most severe
    forms of mental illness deserve to be prioritized.
        There is such a great need for new medications that have reduced
    side effects that deter mental health patients from sustaining
    treatment adherence. We have no medications that improve cognition for
    patients with schizophrenia; a resource that would help my own son a
    great deal. His life has been severely compromised by his serious
    mental illness and we want our government to lead the way in
    researching new medications to help some of our most challenged
    citizens. This is not the time to reduce research, but rather to expand
    the size and scope of the effort.
        Thank you for your consideration of this request.

        Sincerely.
                                     ______

              Prepared Statement of the National Kidney Foundation
                                    summary
        The National Kidney Foundation (NKF) is pleased to submit testimony
    regarding the significant burden that Chronic Kidney Disease (CKD)
    places on our nation's healthcare system and urges the subcommittee to
    increase Federal funding for activities that support the
    Administration's July 2019 Advancing American Kidney Health (AAKH)
    initiative to improve kidney care and outcomes.
        While there has always been a compelling need to increase funding
    for kidney disease, the need is more urgent than ever given the COVID-
    19 crisis, which has taken a disproportionate toll on patients with
    chronic kidney disease (CKD), end-stage renal disease (ESRD), and
    transplant recipients. Early analysis indicates that patients with CKD
    and ESRD are at enhanced risk of developing severe complications as a
    result of COVID-19 infection and a recent study from the New England
    Journal of Medicine found that kidney transplant recipients diagnosed
    with COVID-19 had a 30 percent mortality rate.
        Not only is COVID-19 taking its toll on existing kidney patients,
    it is actively growing their ranks. In New York City, early estimates
    indicate that 20 to 40 percent of COVID-19 ICU patients develop Acute
    Kidney Injury (AKI), a condition that damages the kidneys and can
    require immediate dialysis. A whole group of people with no previous
    history of kidney disease now face acute kidney injury, which brings
    with it an increased risk for developing chronic kidney disease and
    kidney failure.
        Given kidney patients' unique vulnerability to COVID-19, the long-
    term costs associated with kidney disease, and the significant burden
    this condition places on more than 37 million American adults, we urge
    Congress to provide $10 million for CDC to create a Kidney Disease
    Public Awareness Initiative; $5 million to expand the CDC CKD
    Initiative; $2.25 billion for the National Institute of Diabetes,
    Digestive and Kidney Diseases; $10 million for the National Living
    Donor Assistance Center; and $25 million to the KidneyX public-private
    partnership. We also request the subcommittee to consider the needs of
    kidney patients, particularly those with irreversible kidney failure,
    as you address the COVID-19 crisis for fiscal year 2021.
                                   about ckd
        CKD impacts 37 million American adults and is the nation's 9th
    leading cause of death. Kidney disease can be detected through simple
    blood and urine tests, yet 90 percent of CKD patients are undiagnosed,
    many until advanced stages when it is too late for interventions to
    slow disease progression. Nearly 750,000 Americans have irreversible
    kidney failure, also known as end-stage renal disease (ESRD), requiring
    either kidney dialysis at least 3 times per week or requiring a kidney
    transplant. African Americans develop ESRD at a rate of 3:1 compared to
    Whites and Hispanic Americans develop it at a rate of 1.3:1 compared to
    Whites. Medicare spends nearly $120 billion annually on the care of
    people with CKD, including $71 billion for individuals with CKD who
    have not progressed to kidney failure.
        CKD is a disease multiplier, with many patients also experiencing
    cardiovascular disease, bone disease and other chronic conditions. CKD
    also is an independent risk predictor for heart attack and stroke.
    Early stage intervention can improve outcomes and lower healthcare
    costs, yet only 6 percent of patients with high blood pressure and 40
    percent with diabetes (which are responsible for two-thirds of all
    cases of ESRD) receive testing for CKD. To improve awareness, early
    identification, and early stage intervention, NKF calls on Congress to
    invest in kidney health programs throughout HHS.
                       kidney public awareness initiative
        A key aspect of the Advancing American Kidney Health (AAKH)
    initiative is increased awareness of CKD among the public and
    healthcare practitioners to improve early detection, provide early
    intervention and improve outcomes. Early intervention can slow the
    progression of CKD and in some instances prevent kidney failure, reduce
    the impact of comorbidities and reduce hospitalizations and
    readmissions. Unfortunately, there is very little funding dedicated to
    increasing consumers' awareness of their risk for kidney disease. A
    sustained Kidney Public Awareness Initiative will educate at-risk
    individuals to enhance awareness of the causes and consequences of
    kidney disease and educate clinical professionals on the importance of
    early detection and opportunities for intervention. We urge the
    subcommittee to provide $10 million for this important effort.
        A Kidney Public Awareness Initiative also can help reduce severe
    outcomes associated with COVID-19. Hospitalized COVID-19 patients, many
    of whom who had no history with kidney disease, are experiencing acute
    kidney injury (AKI). These patients as well as those with chronic
    kidney disease who are not on dialysis are at increased risk of severe
    outcomes from the virus, including the possibility of permanent kidney
    failure. Increased public awareness might reduce the incidence of
    kidney failure.
                     cdc chronic kidney disease initiative
        The CDC Chronic Kidney Disease Initiative is a comprehensive public
    health strategy to address CKD. Primarily, current activities in this
    program are devoted to a surveillance, epidemiology, and assistance to
    the National Center for Health Statistics for CKD data collection. To
    enhance the fight against CKD, the National Kidney Foundation requests
    $5 million for the CKD program to establish and implement activities
    between national, state, and local public health networks and national
    partners to (1) develop strategies to identify and address gaps in CKD
    early detection and monitor progress; (2) support strategies to improve
    CKD early detection and treatment by primary care providers and; (3)
    facilitate the dissemination of information through state and local
    public health networks.
                national living donor assistance center (nldac)
        With 95,000 Americans on a wait list for a kidney transplant and
    fewer than 24,000 kidney transplants in 2019, removing barriers to
    living donation is widely viewed as a key opportunity to expand the
    number of transplants to improve patients' quality of life. The
    National Living Donor Assistance Program helps offset living donors'
    expenses that are not reimbursed by insurance or other programs, out of
    pocket expenses that often are a barrier to donation. For many people,
    living organ donation would not have been possible without this
    financial assistance.
        We are increasingly concerned that our nation's economic downturn,
    severe job loss and job insecurity will prevent many individuals to
    consider being a living donor. Further, many kidney patients will be
    reluctant to seek a living donor for these same reasons. NKF requests
    the Committee to provide $10 million in fiscal year 2021. Addressing
    financial barriers so that individuals are not burdened with out of
    pocket expenses related to their donation is the right thing to do for
    organ donors and kidney patients.
                                   nih niddk
        Despite the high prevalence of CKD and its impact on patients and
    on Medicare (the ESRD program represents 7 percent of Medicare spending
    but is only 1 percent of Medicare beneficiaries), NIH funding for
    kidney disease research is only about $700 million annually. A key goal
    of the AAKH is providing new opportunities for research. America's
    scientists are at the cusp of many potential breakthroughs in improving
    our understanding of CKD, including genetic kidney disease. Further
    advances can lead to new therapies to delay and treat kidney diseases,
    which has the potential to provide cost savings to the government like
    that of no other chronic disease.
        COVID-19 presents additional needs and opportunities for research
    on the short and long-term impacts of the pandemic on individuals with
    acute kidney injury, chronic kidney disease, dialysis patients and
    kidney transplant recipients. Funding is needed for epidemiological
    studies and clinical trials to better understand and treat their kidney
    challenges and other complications that result from the virus. We
    request $2.25 billion for NIDDK.
                                    kidneyx
        The National Kidney Foundation is an enthusiastic partner in the
    Kidney Innovation Accelerator (KidneyX), an HHS and American Society of
    Nephrology initiative to support and drive innovation in the
    prevention, diagnosis and treatment of CKD. KidneyX consists of prize
    competitions to attract entrepreneurs, including those who are trying
    to develop an artificial kidney. KidneyX has attracted interest from a
    large and talented sphere of innovators. We urge the subcommittee to
    provide $25 million in fiscal year 20201 to enable this promising
    research and innovation to move forward.
        Thank you for your past support and consideration of the National
    Kidney
    Foundation's requests for fiscal year 2021.
                                     ______

      Prepared Statement of the National Marrow Donor Program/Be The Match
        Chairman Blunt, Ranking Member Murray and members of the
    Subcommittee, my name is Kristin Akin from Chesterfield, Missouri. On
    behalf of the patients, family members, donors, couriers, volunteers,
    and staff of the National Marrow Donor Program (NMDP)/Be The Match, I
    want to express my most sincere gratitude to the members of the
    Committee for your work last year, to fully fund for the first time the
    C.W. Bill Young Cell Transplantation Program (Program) within the
    Health Resources and Services Administration (HRSA), Health Care
    Systems account. In fiscal year 2021, we respectfully request that the
    subcommittee maintain full funding for the program at the President's
    requested and authorized amount of $30,009,000.
        By establishing a national bone marrow donor registry in the mid-
    1980s, Congress promised patients with blood cancers, like leukemia and
    lymphoma, that they would have a way to find a life-saving donor match.
    While bone marrow transplant started as a cure for a single disease, we
    now provide cures for over 70 diseases, everything from cancers, blood
    disorders, immune deficiencies and Sickle Cell. Just last December, the
    Program completed its milestone 100,000th transplant between a matched,
    unrelated donor and a patient. This has been a true public/private
    partnership for more than 30 years and it is obvious that the funding
    is saving lives.
        My son, Andrew Preston Akin, was born on June 5, 2007. At ten weeks
    old, what initially started as severe jaundice quickly landed us in the
    Pediatric Intensive Care Unit (PICU) at our local hospital. After
    months of tests, on September 7, 2007, our world was officially turned
    upside down when we were informed that Andrew actually had a rare
    immune deficiency called Hemophagocytic Lymphohistiocytosis (HLH), and
    the only cure was a bone marrow transplant.
        Our then six-month-old son underwent his first bone marrow
    transplant in an effort to save his life. He was started on the
    standard protocol for HLH (HLH 2004) and initially responded very
    positively. But, suddenly, his HLH came roaring back and not only did
    we have to move up his transplant, we used umbilical cord cells, as
    there was not a suitable bone marrow match on the registry at the time.
    Grateful and optimistic that this was the end of HLH and the beginning
    of a new and healthy Andrew, we were devastated to learn that 2 months
    after his transplant, it did not work, and he would need another one.
        In the meantime, we continued with steroids, chemotherapy and a
    host of other drugs, all the while keeping him in a bubble away from
    any and all germs. The search began again to find Andrew the best
    possible unrelated, matched bone marrow donor. Excited that marrow was
    going to be the answer to our prayers, Andrew underwent his second bone
    marrow transplant right before his first birthday. Sadly, almost a year
    to the day of his diagnosis, we learned that again, for various
    reasons, his transplant was not a success.
        Through this process we learned several things about Andrew's
    disease: the cause of his HLH was among the newest genetic mutations--
    X-Linked Lymphoproliferative Disorder #2 (XLP-2). Because it is X-
    linked, the doctors immediately tested me and our other son Matthew. On
    my 34th birthday, I received among the worst news in my life: not only
    was I the carrier, but my healthy 4-year old son also carried the
    mutation, meaning it was only a matter of time before he, too, would
    get HLH.
        After countless discussions with the team of experts, we weighed
    the pros and cons of taking Matthew into transplant while he was
    healthy or waiting until the disease struck.
        We did another preliminary search on the bone marrow registry and
    found one perfect match. Not knowing if that match would be there down
    the road, we made the extremely difficult decision to transplant
    Matthew prophylactically.
        At the same time, we prepared Andrew for his third bone marrow
    transplant in less than 2 years.
        We were fighting for the lives of our two sons.
        Andrew, only 27 months old, developed severe pulmonary
    complications that ultimately took his life on September 5, 2009 in the
    PICU.
        Matthew was just two weeks post-transplant, we thought life could
    not get any worse, but somehow, eight short months later, it did. Our
    first-born son, Matthew Austin Akin passed away in the same PICU on May
    1, 2010. He was only 5 and a half years old.
        My husband and I have experienced every parent's worst nightmare,
    twice, but we both agreed we would not allow our son's deaths to be the
    last thing people remembered about them. Its why my husband and I
    started the Matthew and Andrew Akin Foundation in their memory: to
    raise awareness and critical funds for HLH, NMDP, and the American Red
    Cross, and also to advocate for other parents and children. However, I
    would be remiss if I did not share that a very large part of what
    drives us to continue to help others is the fact that we were blessed
    with the opportunity to be parents again, twice, through adoption.
    William and Christopher are the reason we have love in our hearts and
    can fight for the memory of their brothers Matthew and Andrew.
        While Matthew and Andrew ultimately lost their lives due to disease
    complications, NMDP was our line of hope that we held onto from day one
    when learned that a successful bone marrow transplant was the only
    cure. With each transplant my boys received, we were reminded of the
    kindness of strangers, the feeling of indebtedness to NMDP and Congress
    for establishing the registry and the power of a worldwide network. It
    has been and will continue to be my honor to volunteer my time with
    NMDP.
        The C.W. Bill Young Cell Transplantation Program, authorized by
    Congress, has been funded by the Committee and fulfills three important
    missions. The first is the nation's registry, which includes more than
    22 million selfless volunteers, like my sons' donors, who stand ready
    to be a life-saving bone marrow donor. It also includes more than
    300,000 cord blood units, 106,000 of which are in the National Cord
    Blood Inventory, which is also funded by your Committee. When we
    couldn't find a matching donor for Andrew right away, a cord blood
    transplant was our only hope for his first transplant. Through
    international relationships, NMDP has access to more than 35 million
    potential donors and 783,000 cord blood units worldwide.
        While Matthew and Andrew were able to proceed to transplant thanks
    to their selfless matching donors, there are still many patients who
    cannot find a match on the registry. This is why the full funding you
    provided in fiscal year 2020, and which we are asking for in fiscal
    year 2021, is so critically important. From the moment doctors search
    the registry for a donor, to the safe delivery of the life-saving cells
    to the bedsides of patients for transplant--NMDP is there every step of
    the way. NMDP ensures that the global network, technology, and
    logistical support are in place to facilitate a transplant.
        The Program's second mission is to support patients and families
    through its Office of Patient Advocacy. NMDP works tirelessly to
    improve the lives of patients and provide one-on-one support to these
    individuals and their families. They offer the resources and guidance
    patients need throughout the transplant process--from deciding if
    transplant is right for them to adjusting to life after transplant.
        Finally, the Stem Cell Therapeutic Outcomes Database is a third
    program component that helps doctors significantly impact/improve
    survival for blood cancer and other diseases while also improving the
    quality of life for thousands of transplant patients. NMDP is
    relentless in its search to find answers that will lead to better donor
    matching, more timely transplants, and treatment of even more blood
    diseases through transplant.
        Thank you for the opportunity to share my story and most
    importantly thank you for learning a little bit about my beautiful sons
    Matthew and Andrew. Your longstanding support for this Program is the
    hope that people hold onto after receiving their life-threatening
    diagnosis. On behalf of those who are alive today, those who are
    currently searching the national registry for their potential life-
    saving donor and for those who will need to look to the Program for
    help in the future, I urge you to once again provide full funding for
    the C.W. Bill Young Cell Transplantation Program at the authorized
    amount of $30,009,000 as you did for the current year and as is
    recommended in the President's budget. In this unprecedented time that
    is full of uncertainty, full funding for NMDP will certainly help save
    lives and there is no better work than that.

        [This statement was submitted by Kristin Akin, Staff, National
    Marrow Donor Program/Be The Match.]
                                     ______

           Prepared Statement of the National Multicultural Alliance
        The National Multicultural Alliance (NMCA), formerly National
    Minority Consortia (NMC), submits this statement regarding the fiscal
    year 2021 request for fiscal year 2023 advance appropriation for the
    Corporation for Public Broadcasting (CPB). We are an alliance of five
    separate and distinct national organizations, who, with modest support
    from CPB, bring authentic voices and unique stories of diversity to all
    of America's communities via public broadcasting and its digital
    platforms. Our requests are the following: (1) To provide a much needed
    increase in funding to $515 million in fiscal year 2023 advance
    appropriation for CPB; and (2) that Congress direct CPB to meaningfully
    increase its commitment to diverse programming and serving underserved
    communities.
        Provide fiscal year 2023 advance appropriation for CPB of $515
    million. Public broadcasting enhances the lives of millions of
    Americans, including those in rural areas with free, unique local and
    national education resources that would otherwise not be available.
    Public television stations provide the only preschool education for
    more than half of America's children.
        Public broadcasting upholds strong ethics of responsible journalism
    and thoughtful examination of American history, life and culture. In
    America, where more than half of all children born today are racial and
    ethnic minorities, it is essential that our public media system can
    continue to deliver well-researched and authentic stories that reflect
    our nation's unique and rapidly diversifying populace.
        From children's educational content to public safety awareness,
    America's public broadcasting system is a necessary tool to ensure a
    well-educated, well-informed, and cultured civil society capable of
    meeting the responsibilities of self-government in the world's most
    important democracy. The Federal investment in public media is
    essential to making these services available to everyone, everywhere,
    every day for free.
        Direct CPB to increase its efforts for diversity to meet the
    demands of a growing and diverse public. We applaud the leadership of
    Representative Lucille Roybal-Allard and the House Appropriations
    Committee which last year included in its House Report 116-62, page
    227, the following statement:

        ``According to the Public Broadcasting Act, one of the greatest
            priorities of public broadcasting is to address the 'needs of
            unserved and underserved audiences, particularly children and
            minorities.' Programming that reflects the histories and
            perspectives of diverse racial and ethnic communities is a core
            value and responsibility of public broadcasting, therefore the
            Committee supports continued investment in the National
            Minority Consortia to help accomplish this goal.''

        We urge Congress in bill and/or report language to continue to
    include language that recognizes the importance of the work of the five
    members of the National Multicultural Alliance (NMCA) and the need to
    rapidly increase and expand efforts across programming, content
    creation, and training, to meet the demands of an increasingly diverse
    public.
        The National Multicultural Alliance develops, funds, acquires and
    distributes diverse content to public media entities to serve
    underrepresented communities. These stories reflect the current social
    issues and the rich culture and history and of our rapidly changing
    multicultural landscape, transcending statistics and bringing universal
    American stories to all U.S. citizens.
        The five members of the National Multicultural Alliance each
    receive an appropriation of $1.3 million per year from CPB. Combined,
    this amount totals to just under $6.8 million in discretionary funds
    from CPB per year which is only 1.5 percent of the current CPB budget.
    A modest 10 percent increase by CPB to the NMCA appropriation for a
    combined total of $7.5 million would go a long way in supporting the
    continued development of diverse content for public media and the
    support of filmmakers of color. Through its work, the NMCA helps to
    ensure the future strength and relevance of public media with content
    from and about diverse communities.
         about the national multicultural alliance (nmca) organizations
        Black Public Media (BPM), formerly known as National Black
    Programming Consortium, develops produces, funds, and distributes media
    content about the African American and global Black experience. BPM
    supports diverse voices through training, education, and investment in
    visionary content makers. Some award-winning programs include The Black
    Press: Soldiers without Swords (Stanley Nelson), I Am Not Your Negro
    (Raoul Peck), Maya Angelou: Still I Rise (Rita Coburn-Whack), and
    Shirley Chisholm: Unbought & Unbossed (Shola Lynch).
        The Center for Asian American Media (CAAM) presents stories that
    convey the richness and diversity of Asian American experiences to the
    broadest audience possible. CAAM funds, produces, and exhibits works in
    film, television and digital media. Recent films include The Chinese
    Exclusion Act, by Ric Burns and Li-Shin Yu; Norman Mineta and His
    Legacy: An American Story, by Dianne Fukami; and the upcoming May 2020
    PBS broadcast of Asian Americans, a co-production of CAAM and WETA.
    CAAM also presents CAAMFest, the world's largest film festival for
    Asian and Asian American film.
        Latino Public Broadcasting (LPB) is public media's largest Latino-
    focused content developer and funder providing programming to public
    television's nearly 360 stations and media platforms. Supporting the
    work of Latino filmmakers, LPB has awarded more than 13 million dollars
    in production funding and provided approximately 248 hours of national
    programming and digital content to PBS. LPB's VOCES on PBS reached 3.7
    million viewers with content on the rich diversity of the Latino
    experience. Some productions include Latino Americans, DOLORES, Raul
    Julia The World's a Stage, The Longoria Affair, among others.
        Pacific Islanders in Communications (PIC) develops media content
    that results in a deeper understanding of Pacific Island history,
    culture, and contemporary challenges. PIC provides funding support for
    productions, talent development, broadcast services, and community
    engagement. PIC's Emmy award winning series Family Ingredients is
    gearing up for its third season on PBS and its signature series Pacific
    Heartbeat, which reached over 24 million households last year, will
    begin its ninth season in April. Eating Up Easter will air on
    Independent Lens later this year.
        Vision Maker Media (VMM) serves Native producers and Indian country
    by developing, producing and distributing educational content for
    broadcast and digital media. This year, VMM will deliver 20
    documentaries to Public Broadcasting stations. Also, Vision Maker Media
    supports production training for American Indians and Alaska Native
    communities. A key strategy of VMM's work is the development of strong
    partnerships with tribal nations, Indian organizations and Native
    communities. Recent productions include American Masters Words from a
    Bear, Dawnland, Blackfeet Flood, Attla and a second season of
    Skindigenous. Vision Maker Media strives to share Native perspectives
    by Native independent filmmakers nationally.

        Leslie Fields-Cruz, Black Public Media, 8 W. 126th St., New York,
    NY 10027 leslie@blackpublicmedia.org; www.blackpublicmedia.org 212-234-
    8200.
        Stephen Gong, Center for Asian American Media, 145 9th St., Suite
    350, San Francisco, CA 94103 sgong@caamedia.org; www.caamedia.org 415-
    863-0814.
        Sandie Viquez Pedlow, Latino Public Broadcasting, 2550 N. Hollywood
    Way, Suite 301, Burbank, CA 91505 sandie.pedlow@lpbp.org; www.lpbp.org
    202-499-0840.
        Leanne Ka`iulani Ferrer, Pacific Islanders in Communications, 615
    Pi'ikoi St., Suite 1504, Honolulu, HI 96814 lferrer@piccom.org;
    www.piccom.org 808-591-0059.
        Rebekka Schlichting, Vision Maker Media, 1800 N. 33rd St., Lincoln,
    NE 68503 rschlichting@netas.unl.edu; www.visionmakermedia.org 402-472-
    3522.
                                     ______

         Prepared Statement of the National Multiple Sclerosis Society
        Mr. Chairman and Members of the Subcommittee, the National Multiple
    Sclerosis Society (Society) thanks you for this opportunity to provide
    testimony regarding funding of critically important Federal programs
    that impact over one million Americans who live with or are affected by
    multiple sclerosis (MS). We would be remiss not to acknowledge the
    COVID-19 pandemic that is impacting the entire world. The Federal
    agencies and programs under the jurisdiction of this Committee are
    critically important to all Americans but will be even more so now and
    as the country recovers from the pandemic's impact on the nation's
    health and its economy.
        Therefore, the Society urges the Subcommittee to provide the
    following in fiscal year 2021:
      --$471 million for the Agency for Healthcare Research and Quality
            (AHRQ)
      --$8.45 billion for the Centers for Disease Control and Prevention
            (CDC) inclusive of $5 million for the National Neurological
            Conditions Surveillance Program authorized in the 21st Century
            Cures Act;
      --$10 million for the Lifespan Respite Care Program;
      --Robust support for Medicare and Medicaid and protection of
            Medicaid's current financing structure; and
      --At least $44.7 billion for the National Institute of Health (NIH),
            including funds provided to the agency through the 21st Century
            Cures Act (Public Law 114-255) for targeted initiative;
      --At least $150 million for the Patient Centered Outcomes Research
            Institute (PCORI); and
      --At least $13.5 billion for the Social Security Administration's
            administrative budget.
        MS is an unpredictable, often disabling disease of the central
    nervous system that interrupts the flow of information within the
    brain, and between the brain and body. Symptoms range from numbness and
    tingling to blindness and paralysis. The progress, severity, and
    specific symptoms of MS in any one person cannot yet be predicted. A
    2019 study confirmed that nearly one million Americans live with MS,
    more than double previous estimates and Federal Agencies and programs
    underneath the LHHS jurisdiction ensure that these people have what
    they need to live their bets lives.
        The Society is a fundamental partner with the Federal Government to
    address the challenges of each person affected by MS. We believe that
    the President's fiscal year 2021 proposed budget request would hinder
    MS research and hamper the ability of people with MS from receiving the
    coverage and services they need and rely on. The Society urges the
    Committee to reject these proposed cuts and instead, adequately fund
    research and programs and health coverage and services important to
    people with MS.
               agency for healthcare research and quality (ahrq)
        AHRQ is a small agency that is revolutionizing the healthcare
    system based on healthcare costs and quality. It provides evidence for
    healthcare providers to use to make healthcare safer, higher quality,
    more accessible, equitable, and affordable. Reports like these are
    vital in ensuring that the healthcare community has science and
    evidence-based information to aid in consultations on treatment
    decisions. Now more than ever, the healthcare community needs high
    quality, evidence-based guidelines on which they can rely. The Society
    recommends Congress provide $471 million for AHRQ in fiscal year 2021.
                centers for disease control and prevention (cdc)
        As the nation is currently in the middle of the COVID-19 pandemic,
    the importance of the CDC cannot be overstated. The CDC is tasked with
    protecting public health and safety through the control and prevention
    of disease, injury, and disability. Unfortunately, consistent
    underfunding has limited the Agency's ability to collect data and
    fulfill its mission, including tracing the incidence and prevalence of
    neurological diseases like MS. The 21st Century Cures Act authorized
    the creation of the National Neurological Conditions Surveillance
    System (NNCSS) within the Agency, and Congress has provided funding for
    it since 2018. CDC has set up pilot projects in MS and Parkinson's
    disease in order to determine what information to collect and the best
    methods that can be expanded to use in other neurologic areas. Having
    strong and reliable prevalence data is critical to protecting the
    public health and funding new and novel research to treat neurologic
    conditions. The Society urges Congress to increase funding for the CDC
    in fiscal year 2021 by providing $8.45 billion to the Agency, inclusive
    of the $5 million for the NNCSS.
                    centers for medicare & medicaid services
        Medicare.--It is estimated that between 25-30 percent of the MS
    population relies on Medicare as its primary insurer. Many of these
    individuals are under the age of 65 and receive the Medicare benefit
    because of their disability. The Society urges Congress to ensure
    appropriate reimbursement levels for Medicare providers; maintaining
    access to diagnostics and durable medical equipment including power and
    manual complex rehabilitation technology and related accessories;
    protecting access to needed speech, physical and occupational therapy
    services; updating local coverage determinations to keep pace with
    advances in care; and affordable access to prescription drugs.
        Medicaid.--Medicaid provides comprehensive health coverage to over
    10 million persons living with disabilities, plus six million persons
    with disabilities who rely on Medicaid to fill Medicare's gaps. Between
    5-10 percent of people with MS have Medicaid coverage and people with
    MS also rely on Medicaid for access to long-term services and supports.
    The Society urges Congress to maintain robust funding for Medicaid and
    reject proposals to cap or block grant the program. Especially in the
    midst of the COVID-19 pandemic, ensuing that individuals have health
    coverage is vital and we oppose any policy shift that would limit or
    cut services for people with MS.
                         lifespan respite care program
        The Lifespan Respite Care Program provides competitive grants to
    states to establish or enhance statewide lifespan respite programs that
    better coordinate and increase access to quality respite care.
    Approximately one quarter of individuals living with MS require long-
    term care services at some point during their lifetime. Often, a family
    member steps into the role of primary caregiver. Family caregivers
    allow the person living with MS to remain home for as long as possible
    and avoid premature admission to costlier institutional facilities.
    Family caregiving, while essential, can be draining and stressful.
    Respite offers professional short-term help to give caregivers a break
    from the stress of providing care and has been shown to provide family
    caregivers with the relief necessary to maintain their own health and
    bolster family stability. Much existing respite care has age
    eligibility requirements and importantly, the Lifespan Respite Care
    Program serves families regardless of special need or age. MS is
    typically diagnosed between the ages of 20 and 50, and Lifespan Respite
    programs are often the only open door to needed respite services. For
    these reasons, the Society asks that Congress provide $10 million for
    the Lifespan Respite Care Program in fiscal year 2021.
                         national institutes of health
        The NIH is the nation's premiere biomedical research institution
    and directly supports jobs in all 50 states. The NIH is a fundamental
    partner in the Society's mission to stop MS in its tracks, restore what
    has been lost, and end MS forever. To date, the Society has invested
    over $1 billion to MS research to date; but we rely on Congress to
    provide consistent and sustained investments to the agency to cultivate
    an environment that is optimal for scientific discovery. NIH continues
    to provide the basic research necessary to facilitate the development
    of novel therapies. In fact, the NIH has provided the basic research
    that has led to every MS treatment that is available today. Though much
    progress has been made in MS, there is still a great deal of unmet
    need, particularly those who live with progressive forms of the
    disease- now is not the time to decrease much needed Federal investment
    in NIH. The Society urges Congress to provide at least $44.7 billion
    for the NIH, including funds provided to the agency through the 21st
    Century Cures Act for targeted initiatives.
                  patient-centered outcomes research institute
        PCORI serves a vital role in ensuring that the public and private
    healthcare sectors have valid and trustworthy data on health outcomes,
    clinical effectiveness, and appropriateness of different medical
    treatments by both conducting research and evaluating existing studies.
    Its research addresses the need for real-world evidence and patient-
    focused outcomes data that will improve healthcare quality and help
    shift healthcare payment models toward value-based care. To date, PCORI
    has invested over $69 million in comparative effectiveness studies in
    MS. These studies will provide important evidence for the best ways to
    address questions surrounding what care approaches work best for whom,
    in what care settings. We recommend that Congress reauthorize PCORI to
    continue its important mission and fully fund PCORI in fiscal year
    2021.
                      social security administration (ssa)
        Due to the unpredictable nature and sometimes serious impairment
    caused by the disease, SSA recognizes MS as a chronic illness or
    ``impairment'' that can cause disability severe enough to prevent an
    individual from working. During such periods, people living with MS are
    entitled to and rely on Social Security Disability Insurance (SSDI) or
    Supplemental Security Income (SSI) benefits to survive. The National MS
    Society urges Congress to provide robust funding of at least $13.5
    billion for the Social Security Administration's administrative budget.
        We thank the Committee for the opportunity to provide written
    testimony on our recommendations for the base funding for Agencies and
    programs under the jurisdiction of the fiscal year 2021 LHHS
    appropriations bill. The agencies and programs we have outlined above
    are of vital importance to people living with MS and all Americans.
    Please do not hesitate to contact the Society with any questions that
    you may have, and we look forward to continuing to work with the
    Committee to help move us closer to a world free of MS.

        [This statement was submitted by Leslie Ritter, Associate Vice
    President, Federal Government Relations, National Multiple Sclerosis
    Society.]
                                     ______

             Prepared Statement of the National Pancreas Foundation
           summary of fiscal year 2021 appropriations recommendations
    _______________________________________________________________________

      --The Foundation joins the broader research community in requesting
            that the National Institutes of Health (NIH) receive a funding
            increase of at least $3 billion for fiscal year 2021 to bring
            total agency funding up to a minimum of $44.7 billion annually.
        --Please provide proportional increases for the various NIH
                Institutes and Centers, including the National Institute of
                Diabetes and Digestive and Kidney Diseases (NIDDK) and the
                National Cancer Institute (NCI).
      --The Foundation joins the broader public health community in
            requesting that the Centers for Disease Control and Prevention
            (CDC) receive a funding increase of at least $600 million in
            discretionary resources to bring total agency funding up to a
            minimum of $8.3 billion annually.
        --Please provide $5 million in dedicated, line-item funding for a
                ``Chronic Disease Education and Awareness Program'' within
                the National Center for Chronic Disease Prevention and
                Health Promotion to facilitate support for meritorious and
                timely public health campaigns (as outlined in the fiscal
                year 2020 House L-HHS Appropriations Bill).
    _______________________________________________________________________

        Chairman Blunt, Ranking Member Murray, and distinguished members of
    the subcommittee, thank you for the opportunity to submit testimony on
    behalf of the National Pancreas Foundation (NPF) and the patient
    community that we serve. We deeply appreciate the investments in the
    National Institutes of Health (NIH) that have occurred over the past
    five fiscal years and the research advancements that additional
    resources have facilitated, most notably in treatment progress for
    pancreatitis. For fiscal year 2021, we urge you to maintain this
    commitment to medical research and to similarly increase support for
    emerging public health programs, most notably at the Centers for
    Disease Control and Prevention (CDC). Thank you again.
                              about the foundation
        The National Pancreas Foundation is a patient-driven, non-profit
    organization that provides hope for those suffering from pancreatitis
    and pancreatic cancer by funding cutting edge research, advocating for
    new and better therapies, and providing support and education for
    patients, caregivers, and healthcare professionals.
                           conditions of the pancreas
        Pancreatitis can be acute of chronic. It is characterized by
    inflammation of the pancreas, and chronic pancreatitis does not heal or
    improve-it gets worse over time and leads to permanent damage. Chronic
    pancreatitis eventually impairs a patient's ability to digest food and
    make pancreatic hormones. Chronic pancreatitis can strike at any age,
    but often develops in patients between the ages of 30 and 40, and is
    more common in men than women. The annual incidence rate is 5 -12 per
    100,000 and the prevalence is 50 per 100,000. Pancreatitis can be
    managed with proper information and healthy practices.
        Pancreatic cancer is currently the third leading cause of cancer
    deaths in the United States. One of the major challenges associated
    with pancreatic cancer is that the condition often goes undetected for
    a long period of time because signs and symptoms seldom occur until
    advanced stages. By the time symptoms occur, cancer cells are likely to
    have spread (metastasized) to other parts of the body, often preventing
    surgical removal of tumors. Research indicates an emerging link between
    pancreatitis and the onset of pancreatic cancer.
                    nih research: progress and opportunities
        NIDDK has been a leader on pancreatitis research while NCI has
    facilitated key breakthroughs for pancreatic cancer. More work needs to
    be done though as translation and clinical research are necessary to
    ensure innovative treatment options and diagnostic tools can be
    deployed to the benefit of affected patients.
        In this regard, NIDDK recently hosted an effort with the community
    to capitalize on progress for pancreatitis and ensure promising ideas
    move into the FDA pipeline for review. The need remains great as
    pancreatitis patients currently have extremely limited treatment
    options despite the severity of the illness.
        Moreover, the Cancer Moonshot has been extremely meaningful for
    scientific efforts focused on pancreatic cancer. Similar to
    pancreatitis though, treatment options remain extremely limited despite
    the severity of the disease. In fact, due to improvements in other
    areas and an overall lack of progress in outcomes, pancreatic cancer is
    now the third leading cause of cancer deaths in America.
        Over recent years, key Committee Recommendations have been included
    that have moved key pancreas research projects forward and it is our
    hope that the Subcommittee will continue to demonstrate an interest in
    this area during the fiscal year 2021 process as treatment development
    activities reach a critical phase.
                        cdc public health opportunities
        The National Center for Chronic Disease Prevention and Health
    Promotion coordinates line-item public health programs on a variety of
    conditions. Recently, CDC has limited their public health activities
    almost exclusively to these named efforts. While these programs have
    been highly successful for the conditions they represent, there is a
    tremendous public health need to launch a similar program for
    pancreatitis.
        A lack of adequate professional and public information about
    pancreatitis leads to a suboptimal situation where patients are not
    effectively managing the condition and as it progresses inappropriate
    interventions occur, most notably unnecessary surgery to remove the
    pancreas. The CDC can fill key knowledge gap with a pancreatitis
    program to disseminate best practices to the professional community and
    make sure public health messages reach at-risk individuals.
    Pancreatitis can often be managed if the proper information is
    available, which can prevent the progression of disease, including the
    onset of pancreatic cancer.
        A modest $5 million program will provide CDC with the resources and
    flexibility it needs to fund collaborative public health efforts that
    can have tremendous impact.
    Diane Tonelli's Story
        I am a resident of Massachusetts and I have chronic pancreatitis. I
    was first diagnosed in 2002 w acute pancreatitis-idiopathic just shy of
    2 years after my dad had died from pancreatic cancer. I was
    hospitalized 2 times, managed for pain and treated with TPN.
        I struggled intensely the first few years. I lost 28 pounds, down
    to 92 pounds by mid-summer of 2002.
        During the first few years I had genetic testing which was positive
    for genetic mutation CFTR R117H- cystic fibrosis and negative for BRCA1
    and 2, SPINK1 and PRSS1.
        Over the years since initial diagnosis I have had yearly screening.
    The disease had progressed to chronic pancreatitis with imaging
    revealing moderate to severe disease. I've had a sweat test which
    revealed probable Cystic fibrosis and bone density testing has revealed
    osteoporosis (density of an 80 year old) due to decrease nutrition
    related to pancreas insufficiency.
        Currently I take pancreatic enzymes and continue to follow with GI
    for pancreas severity and have screening for pancreatic cancer.

        [This statment was submitted by David Bakelman, Chief Executive
    Officer,
    National Pancreas Foundation.]
                                     ______

              Prepared Statement of the National Respite Coalition
        Mr. Chairman, I am Jill Kagan, Chair, National Respite Coalition
    (NRC), a network of state respite coalitions, providers, caregivers,
    and national, state and local organizations. We are requesting $10
    million for the Lifespan Respite Care Program administered by the
    Administration on Aging, Administration for Community Living,
    Department of Health and Human Services, in the fiscal year 2021 Labor,
    HHS, and Education Appropriations bill. The increase will enable: (1)
    State replication of Lifespan Respite best practices to allow family
    caregivers, regardless of the care recipient's age or disability, to
    access affordable respite; (2) improved respite quality and expanded
    respite provider capacity; and (3) person and family-centered respite
    services and information for family caregivers on how to find, use and
    pay for respite services.
        Respite Care Saves Money and Benefits Families. Delaying a nursing
    home placement for individuals with Alzheimer's or avoiding
    hospitalization for children with autism can save Medicaid billions of
    dollars. Researchers at the University of Pennsylvania studied the
    records of 28,000 children with autism enrolled in Medicaid in 2004 and
    concluded that for every $1,000 states spent on respite, there was an 8
    percent drop in the odds of hospitalization (Mandell, et al., 2012).
    Respite may help delay or avoid facility-based placements (Gresham,
    2018; Avison, et al., 2018), improve maternal employment (Caldwell,
    2007), strengthen marriages (Harper, 2013), and significantly reduce
    caregiver depression, stress and burden levels linked to caregiver
    health (Broady and Aggar, 2017; Lopez-Hartmann, et al., 2012; Zarit, et
    al., 2014).
        With at least two-thirds (66 percent) of family caregivers in the
    workforce (Mantos, 2015), U.S. businesses lose from $17.1 to $33.6
    billion per year in lost productivity of employed caregivers (MetLife
    Mature Market Institute, 2006). Higher absenteeism among working
    caregivers costs the U.S. economy an estimated $25.2 billion annually
    (Witters, 2011). The University of NE Medical Center conducted a survey
    of caregivers receiving respite through the NE Lifespan Respite Program
    and found that 36 percent of family caregivers reported not having
    enough money at the end of the month to make ends meet, but families
    overall reported a better financial situation when receiving respite
    (Johnson, J., et al., 2018).
        Who Needs Respite? About 41 million unpaid family caregivers of
    adults provided an estimated 34 billion hours of care--worth $470
    billion--to loved ones and friends in 2017 (Reinhard, SC, et al. 2019).
    Eighty percent of those needing long-term services and supports (LTSS)
    are living at home. Two-thirds of older people with disabilities
    receiving LTSS at home receive care exclusively from family caregivers
    (Congressional Budget Office, 2013).
        Concerns about providing care for a growing aging population are
    paramount. However, caregiving is a lifespan issue. The majority (54
    percent) of family caregivers care for someone between the ages of 18
    and 75 (NAC and AARP, 2020). The National Children's Health Survey
    found the number of children with special healthcare needs to be close
    to 14 million (Child and Adolescent Health Measurement Initiative,
    2020). Families caring for children with special healthcare needs
    provide nearly $36 billion worth of care annually (Romley, et al.,
    2016).
        National, State and local surveys have shown respite to be among
    the most frequently requested services by family caregivers (Anderson,
    L, et al., 2018; Maryland Caregivers Support Coordinating Council,
    2015). Yet, 86 percent of family caregivers of adults did not receive
    respite services at all in 2019 (NAC and AARP, 2020). Nearly half of
    family caregivers of adults (44 percent) identified in the National
    Study of Caregiving were providing substantial help with healthcare
    tasks, yet, fewer than 17 percent used respite (Wolff, 2016). The
    Elizabeth Dole Foundation has recommended that respite should be more
    widely available to military caregivers (Ramchand, et al., 2014).
        Respite Barriers and the Effect on Family Caregivers. While most
    families want to care for family members at home, research shows that
    family caregivers are at risk for emotional, mental, and physical
    health problems (Family Caregiver Alliance, 2006; American
    Psychological Association, 2012; Spillman, J., et al., 2014). When
    caregivers lack effective coping styles or are depressed, care
    recipients may be at risk for falling, developing preventable secondary
    health conditions or limitations in functional abilities. The risk of
    care recipient abuse increases when caregivers are depressed or in poor
    health (American Psychological Association, nd). Parents of children
    with special healthcare needs report poorer general health, more
    physical health problems, worse sleep, and increased depressive
    symptoms compared to parents of typically developing children (McBean,
    A, et al., 2013).
        Respite, that has been shown to ease family caregiver stress, is
    too often out of reach or completely unavailable. In a survey of more
    than 3000 caregivers of individuals with intellectual and developmental
    disabilities (ID/DD), nine in ten reported that they were stressed.
    Nearly half (49 percent) reported that finding time to meet their
    personal needs was a major problem. Yet, more than half of the
    caregivers of individuals with ID (52 percent), Autism Spectrum
    Disorder (ASD) (56 percent) or ID and ASD (60 percent) reported that it
    was difficult or very difficult to find respite care (Anderson, L., et
    al., 2018). Respite may not exist at all for those with Alzheimer's,
    ALS, MS, spinal cord or traumatic brain injuries, or children with
    serious emotional conditions.
        Barriers to accessing respite include fragmented and narrowly
    targeted services, cost, and the lack of information about respite or
    how to find or choose a provider. Moreover, a critically short supply
    of well-trained respite providers may prohibit a family from making use
    of a service they so desperately need.
        Lifespan Respite Care Program Helps. The Lifespan Respite Care
    Program, designed to address these barriers to respite quality,
    affordability and accessibility, is a competitive grant program to
    states administered by ACL in the Administration on Aging. The premise
    behind the program is both care relief and cost effectiveness. Lifespan
    Respite provides funding to states to expand and enhance local respite
    services across the country, coordinate community-based respite
    services to reduce duplication and fragmentation, improve coordination
    with other community resources, and improve respite access and quality.
        Since 2009, 37 states and DC have received Lifespan Respite grants.
    Congress appropriated $2.5 million each year from fiscal year 2009-
    fiscal year 2012 and slightly less in fiscal year 2013-fiscal year 2015
    due to sequestration. In fiscal year 2016 and fiscal year 2017, the
    program received $3.3 million, and $4.1 million in fiscal year 2018 and
    fiscal year 2019. We are grateful for the increase to $6.1 million in
    fiscal year 2020. With these funds, States are required to establish
    statewide coordinated Lifespan Respite care systems to serve families
    regardless of age or special need, provide planned and emergency
    respite care, train and recruit respite workers and volunteers and
    assist caregivers in accessing respite. Lifespan Respite helps states
    maximize use of limited resources and deliver services more efficiently
    to those most in need. Increasing funding could allow funding of
    several new states and help current grantees complete their ground-
    breaking work, serve the unserved, and integrate services and grant
    activities into statewide long-term services and support systems.
        During the current pandemic, when family caregiver social isolation
    is escalating, grantees and their primary partners continue to provide
    respite safely in states where they are permitted to do so. They are
    the frontline workers who may be the only outside contact and support
    these families are receiving. If they cannot provide in-person respite,
    the network has expanded support services to include regular phone call
    and email check ins, delivery of care packages, online support groups,
    and virtual training and other educational services via Facebook and
    other social media outlets.
        Last year, the House passed the Lifespan Respite Care
    Reauthorization Act of 2019, introduced by Reps. Jim Langevin (D-RI)
    and Rep. Cathy McMorris Rodgers (R-WA) With continued bipartisan
    support, the bill authorizes $200 million over 5 years. The Senate
    bill, introduced by Senators Susan Collins (R-ME) and Tammy Baldwin (D-
    WI), passed the Senate in February. The Senate bill authorizes $10
    annually ($50 million over 5 years).
        How is Lifespan Respite Program Making a Difference? In describing
    the Lifespan Respite Care Program, a distinguished National Academies
    of Sciences, Engineering, and Medicine panel concluded in the report
    Families Caring for an Aging America, ``Although the program is
    relatively small, respite is one of the most important caregiver
    supports.'' State Lifespan Respite programs are engaged in innovative
    activities:
      --AL, AR, AZ, CO, DE, MD, MT, ND, NE, NV, NC, OK, RI, SC, TN, VA, WA,
            and WI, administer successful self-directed respite vouchers
            for underserved populations, such as individuals with
            Alzheimer's disease, traumatic brain injury, MS or ALS, adults
            with intellectual or developmental disabilities (I/DD), rural
            caregivers, or those on waiting lists for services. When
            families are willing and states permit it, these programs
            continue to operate during the pandemic.
      --AL's respite voucher program found a substantial decrease in the
            percentage of caregivers reporting how often they felt
            overwhelmed with daily routines after receiving respite.
            Caregivers in NE's Lifespan Respite program reported
            significant decreases in stress levels, fewer physical and
            emotional health issues, and reductions in anger and anxiety.
      --Innovative and sustainable respite services, funded in AL, CO, MA,
            NC, and NY through mini-grants to community-based agencies,
            also have documented benefits to family caregivers.
      --AL, IA, MD and NE offer emergency respite and AL, AR, CO, NE, NY,
            PA, RI, SC and TN implemented new volunteer or faith-based
            respite services.
      --Respite provider recruitment and training are priorities in AR, NE,
            NY, SC, VA, and WI.
        State agency partnerships are changing the landscape. Lifespan
    Respite WA, housed in Aging & Long-Term Support Administration,
    partnered with WA's Children with Special Health Care Needs Program,
    Tribal entities and the state's Traumatic Brain Injury program to
    provide respite vouchers to families across ages and disabilities. The
    OK Lifespan Respite program partnered with the state's Transit
    Administration to develop mobile respite in isolated rural areas.
    States, including NY and NV, are building ``no wrong door systems'' in
    partnership with Aging and Disability Resource Centers to improve
    respite access. States are developing long-term sustainability plans,
    but without continued Federal support, many grantees will be cut off
    before these initiatives achieve their full impact.
        No other Federal program has respite as its sole focus, helps
    ensure respite quality or choice, and supports respite start-up,
    training or coordination. We urge you to include $10 million in the
    fiscal year 2021 Labor, HHS, and Education appropriations bill.
    Families will be able to keep loved ones at home, saving Medicaid and
    other Federal programs billions of dollars.
        For more information, please contact Jill Kagan, National Respite
    Coalition at jkagan@archrespite.org. Complete references available on
    request.

        [This statement was submitted by Jill Kagan, Chair, National
    Respite Coalition.]
                                     ______

          Prepared Statement of the National Rural Health Association
        On behalf of the National Rural Health Association (NRHA), we ask
    that you continue to support critically important rural health programs
    as you move forward with fiscal year 2021 funding measures. We thank
    you for your leadership and support for rural health programs and hope
    you will continue these important efforts.
        NRHA is a national nonprofit membership organization with more than
    21,000 members whose mission is to improve the health and healthcare of
    rural Americans and to provide leadership on rural issues through
    advocacy, communications, education, and research. NRHA's membership is
    a diverse collection of individuals and organizations that share a
    common interest in ensuring all rural communities have access to
    quality, affordable healthcare.
        We appreciate the efforts of the Subcommittee on Labor, Health and
    Human Services, Education, and Related Agencies immensely and applaud
    your leadership in supporting rural health programs. This letter
    outlines recommendations that will strengthen the rural healthcare
    safety net and ensure that rural Americans maintain access to critical
    healthcare services.
        Now, more than ever before, it is crucial that the Committee
    support programs that seek to address the severe healthcare crises that
    are escalating in rural America. Rural healthcare providers, who were
    struggling to keep their doors open prior to the COVID-19 virus
    pandemic, are having to decrease operations, furlough and lay off
    staff, and even close their doors during this pandemic. Relief is
    needed for rural healthcare providers before it is too late.
        The rural hospital closure crisis continues to intensify. In 2019,
    the United States experienced the greatest number of rural hospital
    closures in a single year since the beginning of the century, and 2020
    is on pace to surpass that record. So far, four rural hospital, have
    closed during the COVID-19 virus pandemic, and at least 130 rural
    hospitals have closed since 2010. The pandemic has also exacerbated
    healthcare workforce shortages that have plagued rural communities for
    decades; over 75 percent of rural counties are classified as Health
    Professional Shortage Areas (HPSAs).
        COVID-19 is now rapidly spreading to areas in rural America.
    According to a recent Kaiser Family Foundation report, ``In the two-
    week period between April 13 and April 27, non-metro counties saw a 125
    percent increase in coronavirus cases (from 51 cases per 100,000 people
    to 115), on average, and a 169 percent increase in deaths (from 1.6
    deaths per 100,000 people to 4.4).'' All of this is happening at a time
    when nearly half of rural hospitals are operating a financial loss.
        Compared to their urban counterparts, rural Americans are older,
    more likely to have underlying health conditions, and less likely to
    have health insurance or financial resources to weather this storm.
    Additionally, the latest research indicates that COVID-19 cases are
    disproportionately more common among low wage workers, people without
    health insurance, people with underlying health conditions, people of
    color, and Indigenous people: rural Americans. We must ensure that the
    health disparities that have plagued rural communities for decades are
    not exacerbated by this pandemic.''
        To keep rural providers doors' open as the fight against this
    pandemic continues, NRHA asks for robust funding of the fragile rural
    healthcare safety net. We encourage the Committee to recognize that
    rural America is facing crises now and desperately needs immediate
    solutions
        Several indispensable discretionary programs help ensure the
    efficient and equitable delivery of healthcare services in rural areas.
    To better meet these needs, while simultaneously understanding the
    fiscal constraints demanded by Congress, the NRHA requests a modest,
    across-the-board funding increase of 20 percent (unless another amount
    has specifically been authorized by law). These programs include:

      --The Rural Health Care Services Outreach, Network and Quality
            Improvement Grants (Outreach programs) improve rural community
            health by focusing on quality improvement, increasing
            healthcare access, coordination of care, and integration of
            services. The Outreach Grant Program funds critical community-
            based projects for the purpose of increasing access to care in
            rural communities, and Network Development Grants address the
            financial challenges of working with underserved rural
            communities. These grants can be targeted for specific pandemic
            needs, such as tracking rural PPE and testing availability.
            Additionally, these programs have the flexibility to focus on
            community-specific outreach and have an excellent track record
            of improving population health. Great successes have been
            achieved through these grants in establishing community-based
            diabetes control, heart disease and stroke prevention programs.
            Utilization of these grants for pandemic preparedness and
            control is the most cost-effect and rapid way to implement
            community-based rural programs.
      --Rural Hospital Flexibility Grants are used by each state to
            implement specific rural strategies to ensure access to primary
            care in rural communities. Utilization of these grants is the
            most effective way to provide relief and resources to rural
            areas that have been severely impacted by COVID-19. These
            grants allow flexibility, targeted funding, and rapid
            distribution. This extraordinarily successful grant program can
            be used by hospitals to procure needed equipment, expand
            telehealth, and establish rural-specific pandemic plans.
            Critical Access Hospitals (CAHs) provide essential services to
            their communities, and their continued viability supports
            access to care and the health of the rural economy.
            Additionally, funding for these grants support partnerships
            between states and CAHs to work on quality and performance
            improvement activities, as well as help eligible rural
            hospitals convert to CAH status and enhance CAH-related
            emergency medical services, which is desperately needed during
            this crisis. Additionally, it provides support to rural
            hospitals with fewer than 50 beds through awards to 46 states
            with eligible hospitals and increases the delivery of mental
            health services or other healthcare services to meet the needs
            of veterans living in rural areas.
      --Funding for the Rural Health Policy Development program is used to
            support the Federal Office of Rural Health Policy (FORHP) as
            they advise the Secretary on rural health issues, conduct and
            oversee research on rural health, and provide support for
            grants that enhance healthcare delivery in rural communities.
      --State Offices of Rural Health, located in all 50 states, help their
            individual rural communities build healthcare delivery systems.
            They accomplish this mission by collecting and disseminating
            information, providing technical assistance, helping to
            coordinate rural health interests state-wide, and by supporting
            efforts to improve recruitment and retention of health
            professionals.
      --Telehealth funding is for the Office for the Advancement of
            Telehealth, including the Telehealth Network Grant Program,
            which promotes the effective use of technologies to improve
            access to health services and to provide distance education for
            health professionals.
      --The Rural Residency Planning and Development Program seeks to
            expand the number of rural residency training programs and
            subsequently increase the number of physicians choosing to
            practice in rural areas. For the purpose of this program, rural
            residencies are allopathic and osteopathic physician residency
            training programs that primarily train in rural communities.
      --The Rural Communities Opioid Response Program (RCORP) initiative
            aims to reduce the morbidity and mortality associated with
            substance use disorder (SUD), including opioid use disorder
            (OUD), in high risk rural communities by providing funding and
            technical assistance to multi-sector consortia to enable them
            to identify and address OUD prevention, treatment, and recovery
            needs at the community, county, state, and/or regional levels.
      --National Health Service Corps supports qualified healthcare
            providers that are dedicated to working in underserved areas by
            providing scholarship and loan-repayment programs for those
            serving medically underserved communities and populations with
            health professional shortages and/or high unmet needs for
            health services.
      --The Area Health Education Centers (AHEC) Program develops and
            enhances education and training networks within communities,
            academic institutions, and community-based organizations. AHECs
            develop and maintain a diverse healthcare workforce and broaden
            the distribution of the health workforce. The redesigned AHEC
            Program invests in interprofessional networks that address
            social determinants of health and incorporate field placement
            programs for rural and medically underserved populations.
      --The Geriatrics Workforce Enhancement Program (GWEP) improves
            healthcare for older adults by developing a healthcare
            workforce to provide value-based care that improves health
            outcomes for older adults by integrating geriatrics and primary
            care delivery sites/systems.
      --The Teaching Health Center Graduate Medical Education (THCGME)
            Program increases the number of primary care physician and
            dental residents, increasing the overall number of these
            primary care providers. Teaching Health Centers (THCs)
            specifically have been shown to attract residents from rural
            and/or disadvantaged backgrounds who are more inclined to
            practice in underserved areas than those from urban and
            economically advantaged backgrounds.

        NRHA is grateful for your support in recognizing the need for
    providing a sound future for the delivery of rural healthcare. We hope
    you will continue to support the millions of Americans in rural and
    underserved areas by acknowledging and considering these funding
    priorities.

        [Contact: Maggie Elehwany, Vice President, Government Affairs and
    Policy,
    National Rural Health Association melehwany@nrharural.org.]
                                     ______

    Prepared Statement of the National Technical Institute for the Deaf and
                       Rochester Institute of Technology
        Mr. Chairman and Members of the Committee:
        I respectfully submit the fiscal year 2021 budget request for NTID
    (National Technical Institute for the Deaf), one of nine colleges of
    RIT (Rochester Institute of Technology), in Rochester, New York.
    Created by Congress by Public Law 89-36 in 1965, NTID provides a
    university-level technical and professional education for students who
    are deaf and hard of hearing, leading to successful careers in high-
    demand fields for a sub-population of individuals historically facing
    high rates of unemployment and under-employment. NTID students study at
    the associate, baccalaureate, master's and doctoral levels as part of a
    university (RIT) that includes more than 17,000 hearing students. NTID
    also provides baccalaureate and graduate-level education for hearing
    students in professions serving deaf and hard-of-hearing individuals.
                                 budget request
        On behalf of NTID, for fiscal year 2021 I would like to request
    $84,932,000 for Operations. NTID has worked hard to manage its
    resources carefully and responsibly. NTID actively seeks alternative
    sources of public and private support, with approximately 26 percent of
    NTID's Operations budget coming from non-Federal funds, up from 9
    percent in 1970. Since fiscal year 2006, NTID raised almost $24 million
    in support from individuals and organizations.
        NTID's fiscal year 2021 request of $84,932,000 includes almost
    $3,500,000 for establishing a national hub of innovation for deaf
    scientists in Rochester, New York. The ``Hub'' will be a collaborative
    partnership with the University of Rochester and other area
    organizations that will enhance the access of deaf and hard-of-hearing
    persons to career opportunities as scientists, biomedical researchers
    and health professionals. Hub programs will include a summer research
    institute, a pre-career training pipeline for deaf and hard-of-hearing
    scientists, mentoring programs, a postdoc-to-faculty program, and
    guidance for biomedical research institutions and medical schools on
    best practices for training deaf and hard-of-hearing scientists and
    health professionals.
        NTID's fiscal year 2021 request also includes an additional
    $1,000,000 to expand the NTID Regional STEM Center (NRSC) partnership,
    which serves deaf and hard-of-hearing students in 12 southeastern
    states by promoting training and postsecondary participation in STEM
    fields, providing professional development for teachers, and developing
    partnerships with business and industry to promote employment
    opportunities. Via the NRSC, deaf and hard-of-hearing middle school
    students are introduced to STEM programs and careers that will help
    inform their academic and career decisions. Deaf and hard-of-hearing
    high school students can take NTID STEM dual-credit courses and
    participate in career exploration and college preparation programs that
    will help them transition from high school to college. In fiscal year
    2019, up to 3,404 students, 2,850 educators, 644 parents, 290
    employers, 323 interpreters and 174 vocational rehabilitation staff
    enrolled in NRSC programs (some may have enrolled in multiple
    programs).
        Though the total impact and costs of the coronavirus are not yet
    known, many NTID students rely on Pell Grants and have limited
    financial resources, many NTID students do not have computer/WiFi
    access at home and cannot readily adapt to online learning, the demand
    for making online resources ASL-accessible has already generated
    unanticipated expense, and co-op opportunities for students have been
    diminished as industry grapples with the virus. NTID will rally to
    support the persistence and graduation of students whose college
    careers have been disrupted by this virus, but it will take extra
    resources. The coronavirus has also demonstrated the national need for
    timely, accurate and official information in ASL about pandemics and
    healthcare concerns--a service the Hub could provide.
        Currently, NTID is focused on creating a safe environment for
    students to return to campus in the fall. Strategies under
    consideration are size limits on lectures, online and face-to-face
    instruction, virus and antibody testing, contact tracing, social
    distancing measures, daily monitoring, quarantine housing, enhanced
    disinfection, new food service models, touchless technologies,
    sanitized air handling, and upgrading of all residence halls and
    academic facilities to support new safety guidelines.
                                   enrollment
        Truly a national program, NTID has enrolled students from all 50
    states. In Fall 2019 (fiscal year 2020), NTID's enrollment was 1,129
    students. NTID also serves students nationwide through Project Fast
    Forward, a project that builds a pathway for deaf and hard-of-hearing
    students to transition from high school to college in selected STEM
    disciplines by allowing deaf and hard-of-hearing high school students
    to take dual-credit courses, earning RIT/NTID college credit while they
    are still in high school. In fiscal year 2020, 363 deaf and hard-of-
    hearing high school students enrolled in dual-credit courses at partner
    high schools.
                             ntid academic programs
        NTID offers high quality, career-focused associate degree programs
    preparing students for specific well-paying technical careers. NTID
    also provides transfer associate degree programs to better serve our
    student population seeking bachelor's, master's, and doctoral degrees.
    These transfer programs provide seamless transition to baccalaureate
    and graduate studies in the other colleges of RIT.
        A cooperative education (co-op) component is an integral part of
    academic programming at NTID and prepares students for success in the
    job market. A co-op assignment gives students the opportunity to
    experience a real-life job situation and focus their career choice.
    Students develop technical skills and enhance vital personal skills
    such as teamwork and communication, which will make them better
    candidates for full-time employment after graduation. Last year, 232
    students participated in 10-week co-op experiences that augment their
    academic studies, refine their social skills, and prepare them for the
    competitive working world.
                            student accomplishments
        NTID deaf and hard-of-hearing students persist and graduate at
    rates higher than or on par with national persistence and graduation
    rates for all students at two-year and four-year colleges. For NTID
    deaf and hard-of-hearing graduates, over the past 5 years, an average
    of 95 percent have found jobs commensurate with their education level.
    Of our
        Fiscal year 2018 graduates (the most recent class for which numbers
    are available), 95 percent were employed 1 year later, with 65 percent
    employed in business and industry, 15 percent in education and non-
    profits, and 20 percent in government.
        Graduation from NTID has a demonstrably positive effect on
    students' earnings over a lifetime, and results in a notable reduction
    in dependence on Supplemental Security Income (SSI) and Social Security
    Disability Insurance (SSDI). In fiscal year 2012, NTID, the Social
    Security Administration (SSA), and Cornell University examined earnings
    and Federal program participation data for more than 16,000 deaf and
    hard-of-hearing individuals who applied to NTID over our entire
    history. The study showed that NTID graduates, over their lifetimes,
    are employed at a higher rate and earn more (therefore paying more in
    taxes) than students who withdraw from NTID or attend other
    universities. NTID graduates also participate at a lower rate in SSI
    programs than students who withdrew from NTID.
        Using SSA data, at age 50, 78 percent of NTID deaf and hard-of-
    hearing graduates with bachelor degrees and 73 percent with associate
    degrees report earnings, compared to 58 percent of NTID deaf and hard-
    of-hearing students who withdrew from NTID and 69 percent of deaf and
    hard-of-hearing graduates from other universities. Equally important is
    the demonstrated impact of an NTID education on graduates' earnings. At
    age 50, $58,000 is the median salary for NTID deaf and hard-of-hearing
    graduates with bachelor degrees and $41,000 for those with associate
    degrees, compared to $34,000 for deaf and hard-of-hearing students who
    withdrew from NTID and $21,000 for deaf and hard-of-hearing graduates
    from other universities.
        An NTID education also translates into reduced dependency on
    Federal transfer programs, such as SSI and SSDI. At age 40, less than 2
    percent of NTID deaf and hard-of-hearing associate and bachelor degree
    graduates participated in the SSI program compared to 8 percent of deaf
    and hard-of-hearing students who withdrew from NTID. Similarly, at age
    50, only 18 percent of NTID deaf and hard-of-hearing bachelor degree
    graduates and 28 percent of associate degree graduates participated in
    the SSDI program, compared to 35 percent of deaf and hard-of-hearing
    students who withdrew from NTID.
                                access services
        Access services include sign language interpreting, real-time
    captioning, classroom notetaking services, captioned classroom video
    materials, and assistive listening services. NTID provides an access
    services system to meet the needs of a large number of deaf and hard-
    of-hearing students enrolled in baccalaureate and graduate degree
    programs in RIT's other colleges as well as students enrolled in NTID
    programs who take courses in the other colleges of RIT. Access services
    also are provided for events and activities throughout the RIT
    community. Historically, NTID has followed a direct instruction model
    for its associate-level classes, with limited need for sign language
    interpreters, captionists, or other access services. However, the
    demand for access services has grown recently as associate-level
    students request communication based on their preferences.
        During fiscal year 2019, 145,284 hours of interpreting were
    provided--an increase of 24 percent compared to fiscal year 2010.
    During fiscal year 2019, 25,978 hours of real-time captioning were
    provided to students--a 33 percent increase over fiscal year 2010.
                                    summary
        NTID's fiscal year 2021 funding request ensures that we continue
    our mission to prepare deaf and hard-of-hearing people to excel in the
    workplace and expand our outreach to better prepare deaf and hard-of-
    hearing students to excel in college. NTID students persist and
    graduate at rates higher than or on par with national rates for all
    students. NTID graduates have higher salaries, pay more taxes, and are
    less reliant on Federal SSI programs. NTID's employment rate is 95
    percent over the past 5 years. Therefore, I ask that you please
    consider funding our fiscal year 2021 request of $84,932,000 for
    Operations.
        We are hopeful that the members of the Committee will agree that
    NTID, with its long history of successful stewardship of Federal funds
    and an outstanding educational record of service to people who are deaf
    and hard of hearing, remains deserving of your support and confidence.
    Likewise, we will continue to demonstrate to Congress and the American
    people that NTID is a proven economic investment in the future of young
    deaf and hard-of-hearing citizens. Quite simply, NTID is a Federal
    program that works.

        [This statement was submitted by Dr. Gerard J. Buckley, President,
    National Technical Institute, Vice President and Dean, Rochester
    Institute of Technology.]
                                     ______

       Prepared Statement of the National Violent Death Reporting System
        Thank you for this opportunity to submit testimony in support of
    funding for the National Violent Death Reporting System (NVDRS), which
    is administered by the National Center for Injury Prevention and
    Control at the Centers for Disease Control and Prevention (CDC). The
    National Violence Prevention Network (NVPN), a broad and diverse
    alliance of health and welfare, suicide and violence prevention, and
    law enforcement supports a funding level for fiscal year 2021 of $25.5
    million to allow for the continuation nationwide expansion of the NVDRS
    program, which now includes all 50 states, the District of Columbia and
    Puerto Rico. NVPN also advocate for increased funding to the Centers
    for Disease Control and Prevention to support gun violence research at
    a level of $50 million for fiscal year 2020.
                                   background
        In 2016 alone, more than 64,000 Americans were victims of violent
    deaths. These deaths include homicide, suicide, domestic violence,
    abuse and neglect, gang violence, and other causes.\1\ In addition, an
    average of 123 people \2\ (20 of which are military veterans \3\) take
    their own lives each day. Violence-related death and injuries cost the
    United States $107 billion in medical care and loss in
    productivity.\4,5\ Nearly 1.5 million years of potential life before
    age 65 were lost just in 2017 in homicides and suicides.
    ---------------------------------------------------------------------------
        \1\ Centers for Disease Control and Prevention . (2015). Injury
    Prevention & Control : Division of Violence Prevention. Retrieved April
    26, 2018, from http://www.cdc.gov/violenceprevention/nvdrs/.
        \2\ Americans for Suicide Prevention. (n.d.). Suicide Statistics.
    Retrieved April 26, 2018, from Americans for Suicide Prevention: http:/
    /afsp.org/about-suicide/suicide-statistics/.
        \3\ Office of Suicide Prevention, Department of Veterans Affairs
    (2016, August). Suicide Among Veterans and Other Americans, 2001-2014.
    Retrieved April 26, 2018, from Department of Veterans Affairs : https:/
    /www.mentalhealth.va.gov/docs/2016suicidedatareport.pdf.
        \4\ Centers for Disease Control and Prevention . (2016, June 18).
    National Violent Death Reporting System--An Overview . Retrieved 26
    April, 2018, from National Violent Death Reporting System: http://
    www.cdc.gov/violenceprevention/pdf/nvdrs_overview-a.pdf.
        \5\ Centers for Disease Control and Prevention. (2015, December
    15). National Violent Death Reporting System--State Profiles. Retrieved
    March 7, 2017, from A CDC website: https://www.cdc.gov/
    violenceprevention/nvdrs/stateprofiles.html.
    ---------------------------------------------------------------------------
        The NVDRS program makes better use of data that are already being
    collected by health, law enforcement, and social service agencies. The
    NVDRS program, in fact, does not require collection of any new data.
    Instead it links together information that, when kept in separate
    compartments, is much less valuable as a tool to characterize and
    monitor violent deaths. With a clearer picture of why violent deaths
    occurs, law enforcement, public health officials, and others can work
    together to identify those at risk and target effective preventive
    services.
        In 2018, NVDRS was finally able to expand to all 50 states,
    Washington DC, and Puerto Rico thanks to the $23.5 million
    appropriation level. As states begin to enter data into the system, the
    U.S. will finally have a truly nationwide program with which to study
    circumstances surrounding violent deaths.
                                nvdrs in action
        Opioid deaths are a serious public health issue. Drug overdose
    deaths are the leading cause of injury deaths in America.\6\ It is
    important to invest in surveillance of opioid addiction to determine
    the extent of the problem and implement treatment options and
    community-based prevention strategies. NVDRS has already proven to be
    an invaluable tool in many states like Alaska, Indiana and Utah that
    collect information, through toxicology reports, about prescription-
    opioid overdose associated with violent deaths. Combined 2010 NVDRS
    data showed that 24 percent of violent deaths tested were positive for
    opiates.\7,8\
    ---------------------------------------------------------------------------
        \6\ U.S. Department of Health and Human Services . (2016, April 8).
    The U.S. Opioid Epidemic. Retrieved April 14, 2016, from U.S.
    Department of Health and Human Services: http://www.hhs.gov/opioids/
    about-the-epidemic/.
        \7\ Centers for Disease Control and Prevention. (2014, January 17).
    Surveillance for Violent Deaths--National Violent Death Reporting
    System, 16 States, 2010. Retrieved April 14, 2016, from Morbidity and
    Mortality Weekly Report--Surveillance Summaries/Volume 63/No.1: http://
    www.cdc.gov/mmwr/pdf/ss/ss6301.pdf.
        \8\ Alexander GC, F. S. (2015). The Prescription Opioid Epidemic:
    An Evidence-Based Approach. Baltimore: Johns Hopkins Bloomberg School
    of Public Health. http://www.jhsph.edu/research/centers-and-institutes/
    center-for-drug-safety-and-effectiveness/opioid-epidemic-town-hall-
    2015/2015-prescription-opioid-epidemic-report.pdf.
    ---------------------------------------------------------------------------
        Children are often the most vulnerable as they are dependent on
    their caregivers during infancy and early childhood. Sadly, NVDRS data
    has shown that young children are at the greatest risk of homicide in
    their own homes. Combined NVDRS data from 18 of the states that
    currently participate in NVDRS, showed that African American children
    aged 4 years and under are more than three times as likely to be
    victims of homicide than Caucasian children,\9\ and that homicides of
    children aged four and under are most often committed by a parent or
    caregiver in the home. The data further notes that household items, or
    ``weapons of opportunity,'' were most commonly used, suggesting that
    poor stress responses may be factors in these deaths. Knowing the
    demographics and methods of child homicides can lead to more effective,
    targeted prevention programs.
    ---------------------------------------------------------------------------
        \9\ Center for Disease Control and Prevention. (2013). National
    Violent Death Reporting System . Retrieved April 14, 2014, from A Web-
    based Injury Statistics Query and Reporting System (WISQARS) Database:
    https://wisqars.cdc.gov:8443/nvdrs/nvdrsDisplay.jsp.
    ---------------------------------------------------------------------------
        Intimate partner violence (IPV) is another issue where NVDRS is
    proving its value. While IPV has declined along with other trends in
    crime over the past decade, thousands of Americans still fall victim to
    it every year. An analysis of intimate partner homicide based on NVDRS
    data from 18 states shows that intimate partners represented 87 percent
    of intimate partner violence-related homicides victims and corollary
    victims (family members, police officers, friends etc.) represented the
    remaining 13 percent of victims.\10\
    ---------------------------------------------------------------------------
        \10\ Smith, S. G., Fowler, K. A., & and Niolon, P. H. (March 2014).
    Intimate Partner Homicide and Corollary Victims in 16 States--NVDRS
    2003-2009. American Journal of Public Health, 461-466.
    ---------------------------------------------------------------------------
        Despite being in its early stages in several states, NVDRS is
    already providing critical information that is helping law enforcement
    and public health officials target their resources to those most at
    risk of intimate partner violence. For example, NVDRS data shows that
    while occurrences are rare, most murder-suicide victims are current or
    former intimate partners of the suspect or members of the suspect's
    family. In addition, NVDRS data indicate that women are about seven
    times more likely than men to be killed by a spouse, ex-spouse, lover,
    or former lover, and most of these incidents occurred in the women's
    homes.\7\
                              nvdrs & va suicides
        Although it is preventable, every year more than 44,193 Americans
    die by suicide and another one million Americans attempt it, costing
    more than $44 billion in lost wages and work productivity.\2\ Because
    NVDRS includes information on all violent deaths--including deaths by
    suicide--the program can be used to develop effective suicide
    prevention plans at the community, state, and national levels.
        A 2015 study showed that 19.9 percent of all veteran deaths between
    2001 and 2007 were suicide, with male veterans three times as likely as
    female veterans to commit suicide.\11\ The central collection of such
    data can be of tremendous value for organizations such as the
    Department of Veterans Affairs that are working to improve their
    surveillance of suicides. The types of data collected by NVDRS
    including gender, blood alcohol content, mental health issues and
    physical health issues can help prevention programs better identify and
    treat at-risk individuals.
    ---------------------------------------------------------------------------
        \11\ Kang, H., Bullman, T. A., & Smolenski, D. J. (2015). Suicide
    risk among 1.3 million veterans who were on active duty during the Iraq
    and Afghanistan wars. Annals of Epidemiology, 96-100.
    ---------------------------------------------------------------------------
        In addition to veteran suicides, NVDRS data has been crucial in
    many states like Oregon, Utah, New Jersey and North Carolina in
    understanding the circumstances surrounding elder suicide. This has
    allowed the states to collaborate locally and implement programs that
    target those populations at greatest risk.
                              federal role needed
        NVDRS is a relatively low-cost program that yields high-quality
    results. While state-specific information provides enormous value to
    local public health and law enforcement officials, data from all 50
    states, the U.S. territories and the District of Columbia must be
    obtained to complete the national picture. Aggregating this additional
    data will allow us to analyze national trends and also more quickly and
    accurately determine what factors can lead to violent death so that we
    can devise and disseminate strategies to address those factors.
             strengthening and expanding nvdrs in fiscal year 2019
        We cannot reduce funding for a program that just reached its
    capacity to start operations in all 50 states. Congress needs to fund
    NVDRS at the level of $25.5 million.
        We thank you for the opportunity to submit this statement for the
    record. The investment in NVDRS has already begun to pay off, as NVDRS-
    funded states are adopting effective violence prevention programs. We
    believe that national implementation of NVDRS is a wise public health
    investment that will assist state and national efforts to prevent
    deaths from domestic violence, veteran suicide, teen suicide, gang
    violence and other violence that affect communities around the country.
    We look forward to working with you to complete the nationwide
    expansion of NVDRS by securing an fiscal year 2021 appropriation of
    $25.5 million. In addition, we hope that the subcommittee delegates $50
    million to the CDC for gun violence research to make use of the data
    collected by this important program.

        [This statement was submitted Kate McFadyen, Chair, National
    Violence
    Prevention Network.]
                                     ______

                     Prepared Statement of the NEC Society
        Chairman Blunt, Ranking Member Murray, and distinguished members of
    the Subcommittee, as you work to develop the fiscal year 2021 Labor-
    Health and Human Services Appropriations bill, thank you for
    considering the views of the community of physicians, researchers,
    patients, and caregivers affected by necrotizing enterocolitis (NEC).
                             about the nec society
        The NEC Society is 501(c)(3) non-profit, patient-led organization
    that collaborates with the world's leading scientists and clinicians in
    the NEC community. Necrotizing enterocolitis (NEC) is a devastating
    intestinal disease that affects vulnerable infants in their first weeks
    and months of life. NEC causes an inflammatory process that can lead to
    intestinal tissue damage and death. Despite significant advances in
    neonatal care, the morbidity and mortality rates associated with this
    disease have not significantly improved in decades. In the U.S. alone,
    thousands of babies develop NEC each year and hundreds of babies die
    from this complex intestinal condition. Once diagnosed, many babies
    only live for a few hours or days, and survivors can have lifelong
    neurological and nutritional complications. In addition to the stagnant
    morbidity and mortality rates, the prevention and treatment options for
    NEC are inadequate. The NEC Society is dedicated to building a world
    without necrotizing enterocolitis by accelerating research, raising
    awareness, and uniting diverse stakeholders. The NEC Society
    intentionally elevates the voices of women, underrepresented
    communities, and individuals with unique experiences, as they bring
    critical insight and exponentially advance the NEC Society's vision of
    a world without NEC.
                fiscal year 2021 appropriations recommendations
        The NEC Society joins the broader medical research community in
    thanking Congress for continuing to support the National Institutes of
    Health with sustainable growth. Please continue to advance scientific
    progress through proportional funding increases by providing at least a
    $3 billion funding increase for fiscal year 2021 to bring NIH's budget
    up to $44.7 billion.
        In this regard, please provide proportional funding increases for
    all NIH Institutes and Centers, including, but not limited to the
    Eunice Kennedy Shriver National Institute of Child Health and Human
    Development (NICHD) and the National Institute of Diabetes and
    Digestive and Kidney Diseases (NIDDK).
        The NEC Society also joins the public health community in asking
    Congress to provide the Centers for Disease Control and Prevention
    (CDC) with $8.3 billion through fiscal year 2021 and to establish
    funding to increase awareness, education of chronic diseases such as
    necrotizing enterocolitis. The CDC's National Center for Chronic
    Disease Prevention and Public Health Promotion has programs dedicated
    to improving surveillance, physician education, and public awareness
    for several chronic diseases. We encourage the Subcommittee to
    establish a $5,000,000 merit-based programmatic activity in this area
    that will allow CDC to work with stakeholder organizations to expand
    important initiatives on chronic diseases such as necrotizing
    enterocolitis. This program seeks to provide collaborative
    opportunities for chronic disease communities that lack dedicated
    funding from ongoing CDC activities. Such a mechanism allows public
    health experts at the CDC to review project proposals on an annual
    basis and direct resources to high impact efforts in a flexible
    fashion.
                              patient perspective
        Thank you for the opportunity to submit this testimony before you
    today. The NEC Society looks forward to working with you all to advance
    medical research and public health activities that will improve patient
    outcomes for the members of our community suffering from necrotizing
    enterocolitis.
        I founded the NEC Society a year after my 11-month-old son, Micah,
    died from complications of NEC. Over the last 5 years, the NEC Society
    has become the world's leading organization working on this devastating
    neonatal disease. Through this work, I have met remarkable families,
    clinicians, and scientists from around the globe who share my belief
    that we can prevent necrotizing enterocolitis. NEC is not an inevitable
    complication of premature birth; we can and must do more for our most
    vulnerable infants. There is an urgent need for prioritized research
    funding so we can identify the most effective path forward as we work
    to save babies just like my son Micah.

        [This statement was submitted by Jennifer Canvasser, MSW, Founder &
    Director, NEC Society.]
                                     ______

            Prepared Statement of the NephCure Kidney International
                summary of recommendations for fiscal year 2021
    _______________________________________________________________________

      --Provide $44.7 billion for the National Institutes of Health (NIH)
      --Provide a proportional increase for the National Institute of
            Diabetes and Digestive and Kidney Diseases (NIDDK) and the
            National Institute on Minority Health and Health Disparities
            (NIMHD) and support the expansion of the FSGS/NS research
            portfolio at NIDDK and NIMHD by funding more research into
            primary glomerular disease.
    _______________________________________________________________________

        Chairman Blunt and Ranking Member Murray, thank you for the
    opportunity to present the views of NephCure Kidney International
    regarding research on idiopathic focal segmental glomerulosclerosis
    (FSGS) and primary nephrotic syndrome (NS). NephCure is the only non-
    profit organization exclusively devoted to fighting FSGS and the NS
    disease group. Driven by a panel of respected medical experts and a
    dedicated band of patients and families, NephCure works tirelessly to
    support kidney disease research and awareness.
        NS is a collection of signs and symptoms caused by diseases that
    attack the kidney's filtering system. These diseases include FSGS,
    Minimal Change Disease and Membranous Nephropathy. When affected, the
    kidney filters leak protein from the blood into the urine and often
    cause kidney failure, which requires dialysis or kidney
    transplantation. According to a Harvard University report, 73,000
    people in the United States have lost their kidneys as a result of
    FSGS. Unfortunately, the causes of FSGS and other filter diseases are
    poorly understood.
        FSGS is the second leading cause of NS and is especially difficult
    to treat. There is no known cure for FSGS and current treatments are
    difficult for patients to endure. These treatments include the use of
    steroids and other dangerous substances which lower the immune system
    and contribute to severe bacterial infections, high blood pressure and
    other problems in patients, particularly child patients. In addition,
    children with NS often experience growth retardation and heart disease.
    Finally, NS that is caused by FSGS, MCD or MN is idiopathic and can
    often reoccur, even after a kidney transplant.
        FSGS disproportionately affects minority populations and is five
    times more prevalent in the African American community. In a
    groundbreaking study funded by NIH, researchers found that FSGS is
    associated with two APOL1 gene variants. These variants developed as an
    evolutionary response to African sleeping sickness and are common in
    the African American patient population with FSGS/NS. Researchers
    continue to study the pathogenesis of these variants.
        FSGS has a large social impact in the United States. FSGS leads to
    end-stage renal disease (ESRD) which is one of the most costly chronic
    diseases to manage. In 2008, the Medicare program alone spent $26.8
    billion, 7.9 percent of its entire budget, on ESRD. In 2005, FSGS
    accounted for 12 percent of ESRD cases in the U.S., at an annual cost
    of $3 billion. It is estimated that there are currently approximately
    20,000 Americans living with ESRD due to FSGS.
        Research on FSGS could achieve tremendous savings in Federal
    healthcare costs and reduce health status disparities.
                       encourage fsgs/ns research at nih
        There is no known cause or cure for FSGS and scientists tell us
    that much more research needs to be done on the basic science behind
    FSGS/NS. More research could lead to fewer patients undergoing ESRD and
    tremendous savings in healthcare costs in the United States. NephCure
    works closely with NIH and has partnered with NIH on two large studies
    that will advance the pace of clinical research and support precision
    medicine. These studies are the Nephrotic Syndrome Study Network and
    the Cure Glomerulonephropathy Network.
        With collaboration from other Institutes and Centers, ORDR
    established the Rare Disease Clinical Research Network. This network
    provided an opportunity for NephCure Kidney International, the
    University of Michigan, and other university research health centers to
    come together to form the Nephrotic Syndrome Study Network (NEPTUNE).
    Now in its second 5-year funding cycle, NEPTUNE has recruited over 450
    NS research participants, and has supported pilot and ancillary studies
    utilizing the NEPTUNE data resources. NephCure urges the subcommittee
    to continue its support for RDCRN and NEPTUNE, which has tremendous
    potential to facilitate advancements in NS and FSGS research.
        NIDDK houses the Cure Glomerulonephropathy Network (Cure GN), a
    multicenter 5-year cohort study of glomerular disease patients.
    Participants will be followed longitudinally to better understand the
    causes of disease, response to therapy, and disease progression, with
    the ultimate objective to cure glomerulonephropathy. NephCure
    recommends that the subcommittee continues to support the work that the
    Cure Glomeruloneuropathy [CureGN] initiative has accomplished towards
    further understanding rare forms of kidney diseases. It is estimated
    that annually there are 20 new cases of ESRD per million African
    Americans due to FSGS, and 5 new cases per million Caucasians. This
    disparity is largely due to variants of the APOL1 gene. Unfortunately,
    the incidence of FSGS is rising and there are no known strategies to
    prevent or treat kidney disease in individuals with the APOL1 genotype.
    NIMHD began supporting research on the APOL1 gene in fiscal year 2013.
    Due to the disproportionate burden of FSGS on minority populations, it
    remains appropriate for NIMHD to continue to advance this research.
    NephCure asks the subcommittee to recognize the work that NIMHD and
    NIDDK are doing to address the connection between the APOL1 gene and
    the onset of FSGS and encourage NIMHD to work with community
    stakeholders to identify areas of collaboration.
        As a result of the important research done through NIH we have been
    able to work with FDA to establish new endpoints for clinical trial
    leading to more trials than ever before. This has led to the creation
    of the Kidney Health Gateway Clinical that will connect patients with
    breakthrough clinical trials and access top Nephrotic Syndrome doctors
    all in one place. These crucial trials will hopefully lead to more
    treatment options for our patients.
    Patient Perspective
        Meet 13-year-old Macy! She was diagnosed with Nephrotic Syndrome
    and later FSGS when she was three. Her 10-year journey with kidney
    disease has been long and hard. Macy did not respond to treatments for
    her kidney disease and within 2 years of diagnosis, her native kidneys
    were damaged beyond repair and she was in kidney failure and on
    dialysis. At the age of five, she received a living donor kidney
    transplant, but her disease, FSGS came back and attacked her new to her
    kidney. It took a full year of aggressive treatments to get Macy's FSGS
    into remission post-transplant. For the past 10 years, Macy has taken
    18 to 26 medications a day. Those medications and her kidney disease
    have led to multiple co-morbidities. She is currently followed by 7
    specialties, has endured 30+ surgeries & been hospitalized over 100
    times. Macy participates in the Beads of Courage program in which she
    earns different beads for each procedure, appointment etc. The strand
    of beads you see in this photo are just the beads she earned in 2018!
    Those black beads are for pokes (lab draws, IV's, Shots) and Macy
    earned over 400 last year. As you can see kidney disease is tough!
    Although Macy continues to struggle with kidney disease and will need
    another transplant sooner than later, she doesn't let that stop her
    from living life! Macy loves dancing and musical theater, art, and
    hanging out with her dog Bentley!

        [This statement was submitted by Irving Smokler, PH.D., President
    and Founder, NephCure Kidney International.]
                                     ______

              Prepared Statement of the Neurofibromatosis Network
        Thank you for the opportunity to submit testimony to the
    Subcommittee on the importance of funding for the National Institutes
    of Health (NIH), and specifically for continued research on
    Neurofibromatosis (NF), a genetic disorder closely linked to many
    common diseases widespread among the American population. My name is
    Kim Bischoff and I am the Executive Director of the Neurofibromatosis
    (NF) Network, a national organization of NF advocacy groups. We
    respectfully request that you include the following report language on
    NF research at the National Institutes of Health within the Office of
    the Director account in the fiscal year 2021 Labor, Health and Human
    Services, Education Appropriations bill.
        Neurofibromatosis [NF].--The Committee supports efforts to increase
    funding and resources for NF research and treatment at multiple
    Institutes, including NCI, NINDS, NIDCD, NHLBI, NICHD, NIMH, NCATS, and
    NEI. Children and adults with NF are at elevated risk for the
    development of many forms of cancer, as well as deafness, blindness,
    developmental delays and autism; the Committee encourages NCI to
    increase its NF research portfolio in fundamental laboratory science,
    patient-directed research, and clinical trials focused on NF-associated
    benign and malignant cancers. The Committee also encourages NCI to
    support clinical and preclinical trials consortia. Because NF can cause
    blindness, pain, and hearing loss, the Committee urges NINDS to
    continue to aggressively fund fundamental basic science research on NF
    relevant to restoring normal nerve function. Based on emerging findings
    from numerous researchers worldwide demonstrating that children with NF
    are at significant risk for autism, learning disabilities, motor
    delays, and attention deficits, the Committee encourages NINDS, NIMH,
    and NICHD to increase their investments in laboratory-based and
    patient-directed research investigations in these areas. Since NF2
    accounts for approximately 5 percent of genetic forms of deafness, the
    Committee encourages NIDCD to expand its investment in NF2-related
    research. NFl can cause vision loss due to optic gliomas. The Committee
    encourages NEI to expand its investment in NF1-focused research on
    optic gliomas and vision restoration.
        On behalf of the Neurofibromatosis (NF) Network, I speak on behalf
    of the over 100,000 Americans who suffer from NF as well as the
    millions of Americans who suffer from diseases and conditions linked to
    NF such as cancer, brain tumors, heart disease, memory loss, and
    learning disabilities. Thanks in large part to this Subcommittee's
    strong support, scientists have made enormous progress since the
    discovery of the NF1 gene in 1990 resulting in clinical trials now
    being undertaken at NIH with broad implications for the general
    population.
        NF is a genetic disorder involving the uncontrolled growth of
    tumors along the nervous system which can result in terrible
    disfigurement, deformity, deafness, pain, blindness, brain tumors,
    cancer, and even death. In addition, approximately one-half of children
    with NF suffer from learning disabilities. NF is the most common
    neurological disorder caused by a single gene and is more common than
    Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's disease
    and Tay Sachs combined. There are three types of NF: NF1, which is more
    common, NF2, which initially involves tumors causing deafness and
    balance problems, and Schwannomatosis, the hallmark of which is severe
    pain. While not all NF patients suffer from the most severe symptoms,
    all NF patients and their families live with the uncertainty of not
    knowing whether they will be seriously affected because NF is a highly
    variable and progressive disease.
        Researchers have determined that NF is closely linked to heart
    disease, learning disabilities, memory loss, cancer, brain tumors, and
    other disorders including deafness, blindness and orthopedic disorders,
    primarily because NF regulates important pathways common to these
    disorders such as the RAS, cAMP and PAK pathways. Research on NF
    therefore stands to benefit millions of Americans.
    Learning Disabilities/Behavioral and Brain Function
        Learning disabilities affect one-half of people with NF1. They
    range from mild to severe and can impact the quality of life for those
    with NF1. In recent years, research has revealed common threads between
    NF1 learning disabilities, autism, and other related disabilities. New
    drug interventions for learning disabilities are being developed and
    will be beneficial to the general population. Research being done in
    this area includes working to identify drugs that target Cyclic AMP, so
    they can be paired with existing drugs targeting RAS. Identification of
    new drug combinations may benefit people with multiple types of
    learning disabilities.
    Bone Repair
        At least a quarter of children with NF1 have abnormal bone growth
    in any part of the skeleton. In the legs, the long bones are weak,
    prone to fracture and unable to heal properly; this can require
    amputation at a young age. Adults with NF1 also have low bone mineral
    density, placing them at risk of skeletal weakness and injury. Research
    currently being done to understand bone biology and repair will pave
    the way for new strategies to enhancing bone health and facilitating
    repair.
    Pain Management
        Severe pain is a central feature of Schwannomatosis, and
    significantly impacts quality of life. Understanding what causes pain,
    and how it could be treated, has been a fast-moving area of NF research
    over the past few years. Pain management is a challenging area of
    research and new approaches are highly sought after.
    Nerve Regeneration
        NF often requires surgical removal of nerve tumors, which can lead
    to nerve paralysis and loss of function. Understanding the changes that
    occur in a nerve after surgery, and how it might be regenerated and
    functionally restored, will have significant quality of life value for
    affected individuals. Light-based therapy is being tested to dissect
    nerves in surgery of tumor removal. If successful it could have
    applications for treating nerve damage and scarring after injury,
    thereby aiding repair and functional restoration.
    Cancer
        NF can cause a variety of tumors to grow, which includes tumors in
    the brain, spinal cord and nerves. NF affects the RAS pathway which is
    implicated in 70 percent of all human cancers. Some of these tumor
    types are benign and some are malignant, hard to treat and often fatal.
    Previous studies have found a high incidence of intracranial
    glioblastomas and malignant peripheral nerve sheath tumors (MPNSTs), as
    well as a six-fold incidents of breast cancer compared to the general
    population. One of these tumor types, malignant peripheral nerve sheath
    tumor (MPNST), is a very aggressive, hard to treat and often fatal
    cancer. MPNSTs are fast growing, and because the cells change as the
    tumor grows, they often become resistant to individual drugs. Clinical
    trials are underway to identify a drug treatment that can be widely
    used in MPNSTs and other hard-to-treat tumors.
        The enormous promise of NF research, and its potential to benefit
    over 175 million Americans who suffer from diseases and conditions
    linked to NF, has gained increased recognition from Congress and the
    NIH. This is evidenced by the fact that numerous institutes are
    currently supporting NF research, and NIH's total NF research portfolio
    has increased from $3 million in fiscal year 1990 to an estimated $32
    million in fiscal year 2019. Given the potential offered by NF research
    for progress against a range of diseases, we are hopeful that the NIH
    will continue to build on the successes of this program by funding this
    promising research and thereby continuing the enormous return on the
    taxpayers' investment.
        We appreciate the Subcommittee's strong support for the National
    Institutes of Health and will continue to work with you to ensure that
    opportunities for major advances in NF research at the NIH are
    aggressively pursued. Thank you.

        [This statement was submitted by Kim Bischoff, Executive Director,
    Neurofibromatosis Network.]
                                     ______

    Prepared Statement of the New Mexico Southern Colorado Community Health
                           Representative Association
        I write this testimony for the third year in a row on behalf of the
    New Mexico Southern Colorado Community Health Representatives
    Association (NMSCCHRA). The CHRs have been the original tribally
    contracted and administered local tribal health program for 50 years.
    The CHRs are the 'Boots on the Ground' tribal health providers when no
    other health services are available in Native American communities. The
    funding for this valuable community-based health program is funded from
    the Indian Health Service under the budget cited above. The Association
    had been advocating and informing the U.S. Congressional committees on
    the need to maintain and continue the CHR program as well as the Health
    Education line items for the past 3 years. It is a service staffed by
    local tribal community members providing tribal specific and customized
    services. The elimination of such a service will leave some tribes with
    No health providers in rural areas. We encourage your support of the
    overall IHS budget and 2-3 percent yearly increases since 2008,
    however, we realize there is still a huge need for public health
    infrastructure in Native lands.
        The President's budget request proposes to combine funding for CHR
    ($ 62.8 million in fiscal year 2020), Health Education ($20.56 million
    in fiscal year 2020) and nationalization of the Community Health Aide
    Program ($5 million in 2020) into a new 'Community Health' line item
    funded at $44.1 million. By combining all three-line items to one would
    reduce the yearly funding by $44 million for all three combined. All
    three-line items should remain as stated in the Indian Health Care
    Improvement Act which authorizes the IHS budget and has been
    institutionalized as line items. All 3-line items should be increased
    as has been recommended by the Tribal Leaders IHS budget formulation
    workgroup for the past few years. The workgroup put the CHR program as
    priority in Native lands and the IHS budget should be funded based on
    need to $9.1 billion. The Association has gone on record stating the
    three-line items are Public Health in concept and service
    administration, have historical clinical significance in purpose and
    evidence practice in their respective communities. Education and CHRs
    are the first steps in public health practice and protocol in Indian
    Country. You are now seeing the confusion and poor public health
    practice occurring if such programs are not funded adequately in the
    coronavirus pandemic.
        Congress has a constitutional obligation to mandatory fund the
    Indian Health Service budget and for IHS not remain as a discretionary
    budget. There is nothing discretionary about healthcare when lives are
    at stake. The CHR Association is aware of the many Federal service
    providers supporting the CHR program. As Federal employees they took an
    oath to abide by the orders of the President and fear of consequences
    is evident by this Administration of any contraposing professional
    opinions. We have testified on CHR patient information not being
    accepted by in the RPMS system and denying pertinent patient
    information not being put in the patients EHR. We continue to support
    the $25 million EHR line item request in the hopes of mandating CHR
    workload inclusion in the $8 million in the 2020 spending package. The
    IT systems should not compromise patient care and billing requirements.
        The Association supports an indefinite appropriation and separate
    line item for the section 105(l) facility leases. This has forced IHS
    to take from services program accounts to pay for these leases. This
    also forces the budget to take from CHR, Health Ed and other line items
    from direct service tribes to pay other contracting/compacting tribes
    on leases at the expense of locally controlled public health services.
        The CHRs have been the translators, advocates, educators in the
    Coronavirus public health efforts especially at the local community
    levels. We have CHRs who can translate in our native languages,
    understand the cultural impacts of health practices and maintain trust
    and understanding by community members. The CHRs will represent tribes
    and serve as liaisons with other Federal and state partners especially
    in rural and reservation areas with Coronavirus as well as other health
    service systems administered in our communities.
        We appreciate your continued support for Advance Appropriations to
    keep our healthcare facilities and programs open during government
    shutdowns. The IHS funded programs are direct service providers like
    the VA and should be funded with no regard to political grandstanding.
    Thank you very much for recognizing the CHR program and your efforts in
    protecting and promoting Native American healthcare.

        Respectfully,

        New Mexico and Southern Colorado Community Health Representative
    Association Executive Board.
                                     ______

                   Prepared Statement of the Nez Perce Tribe
        Honorable Chairman and members of the Committee, the Nez Perce
    Tribe (Tribe) would like to thank you for the opportunity to provide
    recommendations to the Committee as it evaluates and prioritizes fiscal
    year 2021 appropriations for programs within the Department of Labor,
    Department of Health and Human Services, and the Department of
    Education.
        As with any government, the Tribe performs a wide array of work and
    provides a multitude of services to its tribal membership as well as
    the community at large. The Tribe has been a leader in education,
    workforce development, and social services in this area and places a
    high priority on these programs and the services they provide to
    residents on the Nez Perce Reservation (Reservation). The Tribe relies
    on specific Federal programs and grants to fund this important work
    and, therefore, provides the following fiscal year 2021 appropriations
    recommendations for these agencies.
        The Tribe recommends $20 billion be provided for Title I, Part A of
    the Every Student Succeeds Act Local Education Agency Grants. Rural
    public schools on the Reservation use this funding to address the
    obstacles low-income students face meeting academic standards.
        The Tribe recommends $6.9 million be allocated for the State-Tribal
    Education Partnership Program (STEP) authorized in Title VI, Part A,
    Subpart 3 of the Every Student Succeeds Act. The Tribe is one of the
    participants in the STEP which provides an avenue for states and tribes
    to work together to improve and enhance education delivery and parent
    involvement in areas with high populations of tribal students. The STEP
    has been a success for the Tribe and continued funding is needed to
    keep the program active. The Tribe supports the Administration's
    proposed new bill language that would allow the Secretary of Education
    to make State-Tribal Education Partnership and Native language
    immersion grants for up to 5 years, instead of the current 3 years.
        The Tribe recommends that at least the same amount be appropriated
    in fiscal year 2021 as was allocated in fiscal year 2020 for Impact
    Aid, $1.486 billion. Impact Aid compensates school districts for
    Federal ownership of lands within a district's tax base. Over 14,000
    students and 12 school districts rely heavily on Impact Aid dollars to
    provide education services. For example, Impact Aid accounts for 31
    percent of the budget for the Lapwai School District, an Idaho public
    school here on the Reservation. Without Impact Aid dollars, the school
    will be forced to make significant reductions in staffing and resources
    for students.
        The Tribe recommends that Congress appropriate $10 million in
    fiscal year 2021 for Tribal Education Departments in the Department of
    Education, which would complement the $2.5 million appropriated in
    fiscal year 2020 to the Bureau of Indian Affairs for these programs.
    This funding provides for the development and implementation of
    education programs operated by tribes to assist in the delivery of
    education services within a reservation.
        The Tribe recommends the $11.36 billion be provided for Head Start
    in fiscal year 2021. Indian Head Start needs to be fully funded as
    these programs play a vital role in school readiness, child
    development, and early education for over 24,000 Native children. The
    Nez Perce Tribe Early Childhood Program provides services to 190
    children. The majority of our funding goes to salaries and benefits
    while infrastructure needs are not addressed. We need our facility in
    Lapwai and our facility in Kamiah to be renovated or we need new
    construction so an increase in this funding is essential. The Indian
    Head Start programs address the whole child from a health, cultural,
    and education perspective. These programs operate on slim budgets but
    provide extraordinary returns in ensuring children are as prepared as
    possible to begin their education journey.
        The Tribe recommends the fiscal year 2020 funding levels be
    maintained in fiscal year 2021 for all Tribal Behavioral Health Grants
    under the Substance Abuse and Mental Health Services Administration.
    The grants address a wide range of mental health and substance abuse
    issues such as youth suicide, opioid addiction, and methamphetamine
    addiction that are prevalent on the Reservation and threaten to
    overwhelm the Tribe's Social Services Department and health clinic. In
    addition, the competitive grants and tribal set-asides provided for
    promoting safe and stable families, child welfare services, and child
    abuse prevention should be maintained at fiscal year 2020 levels for
    fiscal year 2021 as well.
        The Tribe appreciates the fiscal year 2020 funding of $50 million
    to address the opioid crisis in Indian Country. However, this funding
    pales in comparison to the funding that has been provided to states on
    this issue. The Tribe recommends funding to address opioid use and its
    effects on communities be increased and also made available in forms
    other than grants. Indian Country suffers from opioid addiction at a
    higher rate than most communities and all communities need access to
    monies to help address this problem. Funding in the form of grants
    places a high administrative burden on tribes and forces tribes to
    compete against each other unnecessarily. Congresswoman McCollum has
    also voiced concern over such methodologies for tribal funding.
        The Tribe opposes the Administration's proposed elimination of
    fiscal year 2021 funding for the Department of Labor's Division of
    Indian and Native American Programs, and recommends $60.5 million be
    appropriated, an increase of $5.5 million over fiscal year 2020 enacted
    level funding. The Workforce Innovation and Opportunity Act, Section
    166 Indian and Native American Programs serve the training and
    employment needs of tribes through programs such as the Indian
    Employment, Training, and Related Services Demonstration Act of 1992.
    The Tribe has used this funding to provide important programs that have
    helped develop the workforce and economy on the Reservation. This
    program has been very successful but will not continue without funding.
        Within the Temporary Assistance for Needy Families program,
    administered by the Administration for Children and Families, the Tribe
    supports the Administration's fiscal year 2021 budget request that
    would increase funding for the Healthy Marriage Promotion and
    Responsible Fatherhood Grants program from $148.8 million to $150
    million. The Tribe strongly supports the Administration's proposed 5-
    year reauthorization of the Healthy Marriage and Responsible Fatherhood
    program. Over the last several years, the Tribe has been able to use
    program funding to strengthen parenting, work and relationship skills
    amongst the youth on the Reservation which is vital to for the growth
    and preservation of Nez Perce culture.
        Thank you for your consideration of the Tribe's requests with
    respect to these fiscal year 2021 appropriations.
                                     ______

     Prepared Statement of the Northwest Portland Area Indian Health Board
        Chairman Blunt and Ranking Member Murray, and Members of the
    Subcommittee: My name is Nickolaus Lewis, and I serve as a council
    member of the Lummi Indian Business Council, Chair of the Northwest
    Portland Area Indian Health Board (NPAIHB or Board), Representative on
    the Substance Abuse Mental Health Services Administration (SAMHSA)
    Technical Tribal Advisory Committee, and Portland Area Representative
    on the Centers for Medicare and Medicaid Services (CMS) Tribal
    Technical Advisory Group. I thank the Subcommittee for the opportunity
    to provide testimony on behalf of NPAIHB on the fiscal year 2021
    Department of Health and Human Services (HHS) budget.
        NPAIHB is a tribal organization, established in 1972, under the
    Indian Self-Determination and Education Assistance Act (ISDEAA), Public
    Law 93-638 that advocates on behalf of the 43 federally-recognized
    Indian Tribes in Idaho, Oregon, and Washington on specific healthcare
    issues. The Board's mission is to eliminate health disparities and
    improve the quality of life of American Indians and Alaska Natives (AI/
    AN) by supporting Northwest Tribes (also known as Portland Area Tribes)
    in the delivery of culturally appropriate, high quality healthcare.
        For fiscal year 2021, NPAIHB makes these specific requests to the
    Subcommittee for the HHS budget:
                              hhs and its agencies
        COVID-19.--Although coronavirus (COVID-19) is not the same as the
    influenza virus, it is transmitted in a very similar way. The last
    pandemic of influenza lasted around 2 years and we can expect a similar
    course of disease for COVID-19 unless we are able to deliver an
    effective vaccine and or antiviral treatment sooner. This Subcommittee
    must consider the importance of fiscal year 2021 funding for tribes to
    mitigate the effects of and eradicate COVID-19 in their communities for
    at least a 2-year period. Without this support, tribes will be forced
    to make impossible decisions. The economic crisis in tribal
    communities, due to the closure of tribal businesses for 2 months, has
    resulted in some tribes carefully opening their businesses at limited
    capacity with much of the nation doing the same. The difference between
    tribal businesses and other for profit businesses is that tribal
    business revenues are reallocated to fund critical health and social
    service programs. We anticipate that the reopening of economies
    nationwide will result in another wave of COVID-19 infections, with
    more AI/AN people being impacted. The AI/AN population faces increased
    risk for COVID-19 infections, and the infection is impacting a younger
    subset of the AI/AN population, which is different than the general
    population. For fiscal year 2021, we respectfully request that this
    Subcommittee honor treaty and trust obligations to tribes by providing
    comprehensive funding to address COVID-19 medical and behavioral health
    needs of AI/AN people in addition to annual core funding needs. NPAIHB
    specifically recommends COVID-19 tribal set-asides across all HHS
    agencies that are equitable to funding distributions to states. In
    addition, funding should be made available directly to IHS, tribes or
    tribal organizations (not through states) or transferred entirely to
    IHS through interagency transfer agreements for distribution to tribes
    through IHS funding distribution methodologies. Any grants should be
    streamlined as to application and reporting processes.
        In addition, NPAIHB recommends that this Subcommittee fund a Tribal
    Public Health Clearinghouse with public health emergency supplies.
    Tribes as sovereign nations should not have to go through states to
    access the Strategic National Stockpile. The Clearinghouse should be
    accessible to tribes and tribal organizations/entities and be stocked
    with medical supplies, testing kits and supplies, including a full
    range of personal protective equipment (PPE) (N95 masks, surgical
    masks, gowns, gloves, etc.). In a NPAIHB survey conducted over the past
    6 weeks with Portland Area Tribes, at least one tribe still does not
    have testing kits and 17 percent report low supplies of PPE- this is
    unacceptable. NPAIHB also recommends that any treatment or vaccinations
    that may become available in fiscal year 2021 be provided directly to
    all IHS and tribal facilities directly for administration at their
    clinics and also be made available through the Tribal Public Health
    Clearinghouse.
           substance abuse and mental health services administration
        COVID-19 Funding.--The impact of COVID-19 on our people as to their
    mental health is of great concern and the long-term impacts are still
    unknown. As a result of COVID-19, in just 2 months, there have been
    increased impacts on mental health, suicidal ideation, depression, and
    substance use. We anticipate there will be many unexpected losses
    within our tribal communities from COVID-19 so NPAIHB generally
    requests increases to all SAMHSA tribal-specific programs and the
    development of new funding sources to address the aftermath of COVID-
    19.
        Tribal-Specific Programs.--For fiscal year 2021, we request
    increases to SAMHSA tribal programs as follows: fund Tribal Behavioral
    Health Grant program at $50 million for fiscal year 2021 with $25
    million for mental health and $25 million for substance abuse (funded
    in fiscal year 2020 at $40 million--$20 for mental health and $20
    million for substance abuse); fund Garrett Lee Smith Suicide Prevention
    Tribal Set Aside at $3.5 million (funded in fiscal year 2020 at $2.9
    million); fund Zero Prevention Initiative at $3 million (funded in
    fiscal year 2020 at $2.2 million); and fund Tribes under the National
    Child Traumatic Stress Initiative (NCTSI) at $1.5 million ($1 million
    set aside in fiscal year 2020).
        Youth Behavioral Health Programs.--There are not enough youth-
    specific funding opportunities to prevent or comprehensively address
    youth services needed for mental health and substance use issues.
    Specifically, our tribes have prioritized the need for Youth
    Residential Treatment Centers that provide aftercare and transitional
    living for both substance use and mental health. While there are two
    facilities in the Portland Area, the Healing Lodge of the Seven Nations
    in Spokane and NARA Northwest in Portland, more are needed with
    expanded services. For fiscal year 2022, we request that SAMHSA consult
    with tribes on developing youth specific programs and constructing new
    facilities and funding sources that comprehensively address the needs
    of our youth.
        Opioid Crisis and Funding..--While NPAIHB appreciates the $50
    million set-aside for tribes and tribal organizations for Tribal Opioid
    Response (TOR) funding, it is not enough funding. Tribes are innovative
    and have developed opioid treatment models that could be replicated
    with flexible funding. For example, in our area, the Swinomish Tribal
    Community has established Didgwalic Wellness Center (http://
    www.didgwalic.com/). The clinic includes wrap around services and a
    full continuum of care for patients- MAT, counseling, primary care and
    oral health services. Other tribes in the Northwest are interested in
    establishing similar programs but are in need of funding to replicate
    this model.
        We recommend that TOR funding be increased to $100 million in
    fiscal year 2021 (funded at $50 million in fiscal year 2020), and that
    funding continue to be non-competitive, provided directly to tribes,
    and that the funding term be increased from 2 years to 5 years. We
    further recommend an increased tribal set-aside for MAT funding at $15
    million (funded at $10 million in fiscal year 2020).
        Tribal Epidemiology Centers. The NPAIHB Northwest Tribal
    Epidemiology Center (NWTEC) has played a critical role in ensuring that
    Portland Area Tribes receive their share of the TOR funding. For the
    funding cycle of fiscal year 2018-fiscal year 2019, the NWTEC applied
    for and received funding for 28 tribes in our area for fiscal year 2018
    and fiscal year 2019 and just applied for another 2-year cycle of
    funding. TECs are not allowed to directly apply for TOR funding for
    staffing, trainings or to provide technical assistance to subgrantees.
    In fiscal year 2021, NPAIHB requests a $2.5 million set-aside for
    Tribal Epidemiology Centers to administer TOR consortium grants and to
    conduct trainings (e.g., data waiver trainings and skills building
    sessions for SUD-providers) and to provide technical assistance to
    subgrantees.
        Behavioral Health Workforce Development. The Community Health Aide
    Program (CHAP) has been a successful program in Alaska and includes
    training and certification for behavioral health aides (BHAs). BHAs are
    selected by and for the community they serve which ensures culturally
    appropriate services. Lack of behavioral health providers is a
    significant issue and need in the Portland Area. Our area has been at
    the forefront of CHAP expansion in the lower 48. In partnership with
    Northwest Indian College and area tribes, NPAIHB has begun the process
    of creating and implementing education programs for Behavioral Health
    Aides (BHAs) in the Portland Area. We recommend that SAMHSA partner
    with IHS and tribes to develop the BHA work force and allocate $15
    million for the development of BHA programs in fiscal year 2022.
                            office of the secretary
        National HIV Elimination Strategy and Minority AIDS Initiative
    (MAI). On February 5, 2019, President Trump in his State of the Union
    announced his initiative on Ending the HIV Epidemic in the United
    States within 10 years. However, no funding was provided to IHS or
    tribes under the Consolidated Appropriations Act of 2020 for Ending the
    HIV Epidemic--despite the fact that other programs were funded. Since
    IHS is under the Interior, Environment and Related Agencies
    Subcommittee, not LHE, IHS was left out of funding. This must change in
    fiscal year 2021. We recommend $27 million in Ending the HIV Epidemic
    funding be transferred to IHS via the Office of Infectious Disease and
    HIV/AIDS Policy, who has worked with IHS for over 10 years to award
    Minority HIV/AIDS Funds via interdepartmental delegations of authority
    (IDDA). Similarly, the MAI allocates resources to CDC, HRSA, NIH,
    SAMHSA, and OMH. IHS does not receive direct MAI dollars. Excluding IHS
    from MAI dollars has far reaching and harmful impacts on IHS's ability
    to provide HIV/AIDS and HCV prevention, treatment, and outreach
    efforts. NPAIHB recommends that this Subcommittee create a fund
    mechanism for IHS to receive MAI dollars in the amount of $10 million
    for distribution via the Office of Infectious Disease and HIV/AIDS
    Policy.
        Minority HIV/AIDS Fund. The Minority HIV/AIDS Fund is the only HHS
    funding source that includes funding to IHS for HIV and hepatitis C
    (HCV) prevention, treatment, outreach and education. For fiscal year
    2021, we recommend at least $60 million for Minority HIV/AIDS Fund with
    at least $10 million to IHS.
                centers for disease control and prevention (cdc)
        COVID-19 Funding.--Surveillance, contact tracing and public health
    nurses, will be key to preventing the spread of COVID-19 in tribal
    communities. For fiscal year 2021, we recommend that $250 million be
    allocated to tribes for these important activities/roles during the
    pandemic.
        Fund Good Health and Wellness in Indian Country. The Good Health
    and Wellness in Indian Country (GHWIC) initiative supports efforts by
    American Indian and Alaska Native communities to implement holistic and
    culturally adapted approaches to reduce tobacco use, improve physical
    activity and nutrition, and increase health literacy. With COVID-19,
    tribal communities are more focused than ever on the importance of
    traditional foods and the nutritional and healing qualities of these
    food in a time of crisis. Additional funding is needed for GHWIC to
    address food access issues, food insecurity, and support traditional
    food and local food system initiatives during COVID-19. NPAIHB
    recommends that Good Health and Wellness in Indian Country program be
    funded at $32 million in fiscal year 2021.
        Public Health Infrastructure & Environmental Impacts. While many
    tribal health programs have some public health infrastructure, it is
    often underfunded and may lack the capacity to respond effectively to
    health, natural, and manmade disasters. The COVID-19 pandemic provides
    an example of how many tribes across Indian country were lacking the
    basic public health infrastructure to respond to this unexpected event
    and public health emergency. In fiscal year 2021, we request that CDC
    provide direct funding for tribal public health infrastructure in the
    amount of $1 billion by authorizing a Tribal Public Health Emergency
    Fund established through the Secretary of HHS that tribes can access
    directly for tribally-declared public health emergencies (analogous to
    tribal disaster declarations to access FEMA).
        Include Tribes in HIV/HCV Funding Opportunities. CDC HIV/HCV
    prevention and education generally flows to states via block grants.
    This system leaves many tribes with limited or no resources, and forces
    tribes to compete with states for funding. As an example, in fiscal
    year 2020, the CDC received $341 million in fiscal year 2020 for HCV
    grants but tribes were ineligible to apply (CDC-RFA-PS20-2009). For
    fiscal year 2021, we recommend a tribal set-aside of $25 million for
    HIV and HCV prevention.
                centers for medicare and medicaid services (cms)
        Medicaid and Medicare Telehealth Services.--Telehealth is a key
    component to ensuring AI/AN Medicaid and Medicare beneficiaries, have
    access to healthcare when they do not have transportation to get to a
    provider or, as with COVID-19, someone is in a high-risk group for
    serious illness and should not visit a medical facility. IHS and tribal
    facilities have demonstrated that telehealth visits are a safe and
    effective way to provide services to AI/AN Medicaid and Medicare
    beneficiaries during COVID-19. CMS' expansion of telehealth services on
    a temporary and emergency basis related to COVID-19 has benefited AI/AN
    Medicaid and Medicare beneficiaries and these telehealth policies
    should be made permanent under legislation. In addition, because of the
    lack of broadband in some rural tribal communities, it is important
    that all telehealth services be reimbursable with a phone visit, when
    no video is available. Finally, we recommend an increased tribal
    Medicare encounter rate for telehealth, including phone only visits,
    for Indian Health Care Providers equal to an in-person visit.
        For more information, please contact Laura Platero, NPAIHB, at
    lplatero@npaihb.org.

        [This statement was submitted by Nickolaus Lewis, Chairman,
    Northwest
    Portland Area Indian Health Board.]
                                     ______

             Prepared Statement of the Nursing Community Coalition
        During these unique times, we recognize how crucial Federal
    investments for the nursing workforce and the nursing pipeline are to
    our patients and the health of our nation. Given these realities, and
    as we combat the COVID-19 pandemic, the Nursing Community Coalition
    respectfully requests that Congress continues robust investment in
    nursing workforce, education, and research in fiscal year 2021 by
    supporting at least $278 million for the Nursing Workforce Development
    programs (authorized under Title VIII of the Public Health Service Act
    [42 U.S.C. 296 et seq.] and administered by HRSA), and at least $182
    million for the National Institute of Nursing Research (NINR), one of
    the 27 Institutes and Centers within NIH.
        The Nursing Community Coalition is comprised of 63 national nursing
    organizations who work together to advance healthcare issues that
    impact education, research, practice, and regulation. Collectively, the
    Nursing Community Coalition represents Registered Nurses (RNs),
    Advanced Practice Registered Nurses (APRNs, including Certified Nurse-
    Midwives, Nurse Practitioners, Clinical Nurse Specialists, and
    Certified Registered Nurse Anesthetists), nurse leaders, nursing
    students, faculty, and researchers, as well as other nurses with
    advanced degrees. Together, we reiterate the request for increased
    funding for Title VIII Nursing Workforce Development programs and NINR,
    especially as we address the current, and future, health challenges.
            providing care to all americans through the nursing lens
        Nurses make up the largest group of health professionals in the
    United States and are indispensable to the health and well-being of all
    Americans. With more than four million licensed practitioners across
    the country, nurses are responding to healthcare challenges, including
    COVID-19, in all communities, especially in rural and underserved
    areas, and consistently provide high-quality patient-centered care.\1\
    ---------------------------------------------------------------------------
        \1\ National Council of State Boards of Nursing. (2020). Active RN
    Licenses: A profile of nursing licensure in the U.S. as of March 21,
    2020. Retrieved from: https://www.ncsbn.org/6161.htm.
    ---------------------------------------------------------------------------
        The main source of Federal funding for the nursing workforce are
    the Title VIII Nursing Workforce Development programs, which bolster
    nursing education at all levels, strengthen the nursing workforce, and
    are essential to ensuring the demand for nursing care is met throughout
    this nation. Funding for Title VIII is essential, but especially
    crucial during public health emergencies as these programs connect
    patients with high-quality nursing care in community health centers,
    hospitals, long-term care facilities, local and state health
    departments, schools, workplaces, and patients' homes.
        A prime example of this is the Title VIII Advanced Nursing
    Education (ANE) programs. ANE programs support APRN students and nurses
    to practice on the front lines and in rural and underserved areas
    throughout the country. In Academic Year 2018-2019, ANE programs
    supported more than 9,100 students.\2\ Of these students, 73 percent of
    Advanced Nursing Education Workforce (ANEW) and 62 percent of Advance
    Nursing Education program had clinical training sites in primary care
    settings, while 78 percent of Nurse Anesthetist Trainee (NAT)
    recipients were trained in medically-underserved areas.\3\
    ---------------------------------------------------------------------------
        \2\ Department of Health and Human Services fiscal year 2021 Health
    Resources and Services Administration Justification of Estimates for
    Appropriations Committees. Pages 141-145.
    Retrieved from: https://www.hrsa.gov/sites/default/files/hrsa/about/
    budget/budget-justification-fy2021.pdf.
        \3\ Department of Health and Human Services fiscal year 2021 Health
    Resources and Services Administration Justification of Estimates for
    Appropriations Committees. Pages 142-143.
    Retrieved from: https://www.hrsa.gov/sites/default/files/hrsa/about/
    budget/budget-justification-fy2021.pdf.
    ---------------------------------------------------------------------------
        Together, Title VIII Nursing Workforce Development programs serve a
    vital need and help to ensure that we have a robust nursing workforce
    that is prepared to respond to public health threats and ensure the
    health and safety of all Americans. The Nursing Community Coalition
    respectfully requests at least $278 million for the Title VIII Nursing
    Workforce Development programs in fiscal year 2021.
       improving patient care through scientific research and innovation
        For more than thirty years, scientific endeavors funded at the
    National Institute of Nursing Research (NINR) have been essential to
    advancing the health of individuals, families, and communities.
    Rigorous inquiry and research are indispensable when responding to the
    ever-changing healthcare landscape and healthcare emergencies such as
    COVID-19. From precision genomics to palliative care and wellness
    research to patient self-management, NINR has been at the forefront of
    evidence driven research to improve care.\4\
    ---------------------------------------------------------------------------
        \4\ National Institutes of Health, National Institute of Nursing
    Research. The NINR Strategic Plan: Advancing Science, Improving Lives.
    Pages 4, 10 Retrieved from https://www.ninr.nih.gov/sites/
    www.ninr.nih.gov/files/NINR_StratPlan2016_reduced.pdf.
    ---------------------------------------------------------------------------
        It is imperative that we continue to support this necessary
    scientific research, which is why the Nursing Community Coalition
    respectfully requests at least $182 million for the NINR in fiscal year
    2021.
        Now, more than ever, it is vital that we have the resources to meet
    today's public health challenges, such as COVID-19. Investing in Title
    VIII Nursing Workforce Development programs and NINR are essential to
    meeting that need. By funding Title VIII and NINR, Congress can
    continue to reinforce and strengthen the foundational care nurses
    provide daily in communities across the country. Thank you for your
    support of these crucial programs.

    60 Members of the Nursing Community Coalition Submitting this Testimony

    Academy of Medical-Surgical Nurses
    American Academy of Ambulatory Care Nursing
    American Academy of Emergency Nurse Practitioners
    Academy of Neonatal Nursing
    American Academy of Nursing
    American Association of Colleges of Nursing
    American Association of Critical-Care Nurses
    American Association of Neuroscience Nurses
    American Association of Nurse Anesthetists
    American Association of Nurse Practitioners
    American Association of Post-Acute Care Nursing
    American College of Nurse-Midwives
    American Nephrology Nurses Association
    American Nurses Association
    American Organization for Nursing Leadership
    American Pediatric Surgical Nurses Association, Inc.
    American Public Health Association, Public Health Nursing Section
    American Psychiatric Nurses Association
    American Society for Pain Management Nursing
    American Society of PeriAnesthesia Nurses
    Association for Radiologic and Imaging Nursing
    Association of Community Health Nursing Educators
    Association of Nurses in AIDS Care
    Association of Pediatric Hematology/Oncology Nurses
    Association of periOperative Registered Nurses
    Association of Public Health Nurses
    Association of Rehabilitation Nurses
    Association of Veterans Affairs Nurse Anesthetists
    Association of Women's Health, Obstetric and Neonatal Nurses
    Chi Eta Phi Sorority, Incorporated
    Commissioned Officers Association of the U.S. Public Health Service
    Dermatology Nurses' Association
    Emergency Nurses Association
    Friends of the National Institute of Nursing Research
    Gerontological Advanced Practice Nurses Association
    Hospice and Palliative Nurses Association
    Infusion Nurses Society
    International Association of Forensic Nurses
    International Society of Psychiatric-Mental Health Nurses
    National Association of Clinical Nurse Specialists
    National Association of Hispanic Nurses
    National Association of Neonatal Nurse Practitioners
    National Association of Neonatal Nurses
    National Association of Nurse Practitioners in Women's Health
    National Association of Pediatric Nurse Practitioners
    National Association of School Nurses
    National Black Nurses Association
    National Council of State Boards of Nursing
    National Forum of State Nursing Workforce Centers
    National League for Nursing
    National Nurse-Led Care Consortium
    National Organization of Nurse Practitioner Faculties
    Nurses Organization of Veterans Affairs
    Oncology Nursing Society
    Organization for Associate Degree Nursing
    Pediatric Endocrinology Nursing Society
    Preventive Cardiovascular Nurses Association
    Society of Pediatric Nurses
    Society of Urologic Nurses and Associates
    Wound, Ostomy and Continence Nurses Society

        [This statement was submitted by Rachel Stevenson, Executive
    Director, Nursing Community Coalition.]
                                     ______

                 Prepared Statement of One Voice Against Cancer
        One Voice Against Cancer (OVAC) is a broad coalition of public
    interest groups representing millions of cancer patients, researchers,
    providers, survivors and their families, delivering a unified message
    to Congress and the White House on the need for increased funding for
    cancer research and prevention priorities. For fiscal year 2021, we are
    asking that Congress fund the National Institutes of Health at $44.684
    including $6.928 billion for the National Cancer Institute (NCI). We
    are also asking that the Centers for Disease Control and Prevention's
    (CDC) Division of Cancer Prevention and Control (DCPC) receive $559
    million including $70 million for the National Program of Cancer
    Registries (NPCR).
        Cancer is a major public health problem worldwide and is the second
    leading cause of death in the United States. It is estimated that more
    than 1.8 million people in the U.S. will be diagnosed with cancer this
    year. Additionally, approximately 606,520 Americans will die from the
    disease in 2020, which translates to more than 1,660 people a day.
    Recent estimates show that cancer costs the U.S. economy more than $216
    billion annually in direct treatment costs and lost productivity, a
    number that will increase dramatically as incidence rates climb.
        For the last 50 years, every major medical breakthrough in cancer
    can be traced back to the National Institutes of Health (NIH) and the
    National Cancer Institute (NCI). We know that investment in research at
    the NIH and NCI leads to lives saved.
        The cancer death rate rose during most of the 20th century but
    Federal investments in cancer research and prevention have resulted in
    a continuous decline in the cancer death rate since its peak in 1991.
    The U.S. cancer death rate declined by 29 percent from 1991 to 2017,
    including a 2.2 percent drop from 2016 to 2017, the largest single-year
    drop in cancer mortality ever reported. This translates into almost 3
    million fewer cancer deaths. Today, there are more than 16.9 million
    American cancer survivors.
        Additionally, more than 80 percent of Federal funding for the NIH
    and NCI is spent on biomedical research projects at research facilities
    across the country. In fiscal year 2019, the NIH provided over $30
    billion in extramural research to scientists in all 50 states and the
    District of Columbia. NIH research funding also supported more than
    475,000 jobs and more than $81 billion in economic activity last year.
        Thanks to your bipartisan, bicameral leadership, Congress has
    increased funding for NIH by $11.6 billion over the past 5 years. We
    are especially grateful that Congress dedicated new funding in fiscal
    year 2020 to address a precipitous decline in the success rate for
    research project grant (RPG) applications at NCI.
        The NCI is experiencing a demand for research funding that is far
    beyond that of any other Institute or Center (IC). Between fiscal year
    2013 and fiscal year 2018, the number of R01 (investigator-initiated)
    grant applications to NCI rose by 45.9 percent. For all other ICs
    during that time, the number of R01 applications rose by just 4.9
    percent.
        As a result of this extraordinary demand from the scientific
    community, the RPG success rate at NCI dropped from 13.7 percent in
    fiscal year 2013 to 11.3 percent in fiscal year 2018. This is a
    situation unique to NCI, at a time when cancer researchers are making
    historic advances in new treatments and therapies. The success rate for
    NIH overall during that same period rose from 16.8 percent to 20.2
    percent.
        We thank Congress for addressing this issue in the fiscal year 2020
    Labor, Health and Human Services, and Education (Labor-HHS)
    Appropriations bill, but sustained investments will be required to
    improve the success rate at NCI and maintain the current pace of
    progress in cancer research. Therefore, OVAC recommends at least $44.7
    billion for NIH in fiscal year 2021, a $3 billion increase over the
    fiscal year 2020 level. For NCI, we recommend $6.9 billion, which is
    both the amount proposed by NCI in its fiscal year 2021 professional
    judgment budget and the level needed to provide an increase for NCI
    which is proportional to that of NIH overall.
        Preventing cancer is also critically important. About half of the
    over 600,000 cancer deaths that will occur this year could be averted
    through the application of existing cancer control interventions. The
    Centers for Disease Control and Prevention's (CDC's) Division of Cancer
    Prevention and Control (DCPC) provides key resources to states and
    communities to prevent cancer. Although we have seen declines in the
    cancer death rate overall, progress is slowing for cancers that are
    amenable to early detection through screening (e.g., breast cancer,
    prostate cancer, and colorectal cancer), and substantial racial and
    geographic disparities persist for highly preventable cancers, such as
    those of the cervix and lung. Increased investment in the equitable
    application of existing cancer control interventions as spearheaded by
    CDC's DCPC will accelerate progress in the fight against cancer. For
    this reason, we request $559 million overall for DCPC, an increase of
    $178 million over the fiscal year 2020 level.
        Within DCPC, cancer registries are vital in identifying emerging
    trends, investigating disparities, understanding patterns of care, and
    evaluating the impact of early detection and treatment advances on
    cancer incidence and outcomes. The National Program of Cancer
    Registries (NPCR) provides technical, operational, and financial
    support for states to manage their own cancer registries. We are
    grateful that Congress prioritized cancer registries in CDC's new data
    initiative, created in the fiscal year 2020 Labor-HHS appropriations
    bill. However, there is currently a data lag of 24 months within the
    system. With new resources, the CDC could create a cloud-based system
    that would record data in real time, greatly enhancing the ability of
    states to develop targeted approaches to preventing and treating
    cancer. We therefore request a dedicated increase in funding for NPCR
    of $19 million to ensure that DCPC can move forward with the necessary
    improvements.
        Additionally, oncology nurses are on the front lines when it comes
    to providing quality cancer care and contribute significantly to cancer
    research. More funding for the Health Resources and Services
    Administration's nurse training programs is necessary to support more
    nursing scholarships and loan repayment applications and to address the
    current and future nursing workforce shortage.
        Below please find an overview of OVAC's program level requests in
    the Labor-HHS bill:
    National Institutes of Health (NIH)--$44.684 billion, including:
      --National Cancer Institute (NCI): $6.928 billion
      --National Institute on Minority Health and Health Disparities
            (NIMHD): $360 million
      --National Institute on Nursing Research (NINR): $181 million
    Centers for Disease Control and Prevention (CDC) Cancer Programs--$559
            million, including:
      --National Comprehensive Cancer Control Program: $50 million
      --National Program of Cancer Registries: $70 million
      --National Breast and Cervical Cancer Early Detection Program: $275
            million
      --Colorectal Cancer Control Program: $70 million
      --National Skin Cancer Prevention Education Program: $5 million
      --Prostate Cancer Awareness Campaign: $35 million
      --Ovarian Cancer Control Initiative: $12 million
      --Gynecologic Cancer and Education and Awareness (Johanna's Law): $15
            million
      --Cancer Survivorship Resource Center: $900,000
    Health Resources and Services Administration (HRSA)
      --Title VIII Nursing Programs: $270.5 million

        Once again, thank you for your continued leadership on funding
    issues important in the fight against cancer. Obviously, the COVID-19
    pandemic has upended our entire society including cancer research,
    treatment and prevention but cancer continues to impact millions of
    people and their families and it does not take a break because of the
    pandemic. Funding for cancer research, prevention, survivorship, and
    nursing must continue to be top budget priorities in order to increase
    the pace of progress in the fight against cancer. OVAC once again calls
    on Congress to sustain our nation's commitment to cancer research and
    prevention by increasing support for these efforts.

        [This statement was submitted by Caroline Powers, Chair, One Voice
    Against Cancer, Director, Federal Relations, American Cancer Society
    Cancer Action
    Network.]

                                     ______

                   Prepared Statement of Parker Teresa  deg.
                      Prepared Statement of Teresa Parker
        Chairman Blunt, Ranking Member Murray and Subcommittee Members,
        Thank you for your public service and for the opportunity to submit
    testimony.
                            interest and background
        I have recently retired after working over 40 years at MARVA
    Workshop where I served as the Executive Director for the last 21
    years. MARVA is a 501(c)3 non-profit organization with a mission to
    provide meaningful work and employment services for individuals with
    Intellectual and Developmental Disabilities (IDD).
        MARVA Workshop, like many other Community Rehab Programs (CRP)
    across the nation, has a focus on assisting individuals to achieve
    goals that are important to them. Our job is to facilitate a successful
    outcome for each individual in the way that they define success.
    Sometimes this is accomplished in the workshop setting, other times
    through competitive integrated employment, but it is a choice made by
    the individual. Unfortunately, center based work has come under attack
    from multiple entities that bluntly and emphatically state workshops
    isolate, segregate and exploit. These offensive adjectives used by
    organizations like the National Disability Rights Network (NDRN) to
    express their disapproval of center based opportunities, do not match
    the sentiments conveyed by the individuals and families of the people
    we serve, and thousands and thousands of others across the United
    States. We understand and fully agree that center based work is not the
    appropriate option for everyone, but I humbly suggest that neither is
    competitive integrated employment.
        For example ``Ron'' has worked at MARVA for over 20 years. Prior to
    MARVA, he experienced failure over and over, and had been fired at
    least 10 times from various jobs. He was broke, discouraged, homeless,
    and desperate. Turning to his mother, she directed him to MARVA. Today,
    Ron will quickly tell you, ``Since working at MARVA my life has never
    been the same! MARVA...helped me be independent and encouraged me to
    feel a sense of worth. I plan to work at MARVA for many years to come.
    I don't ever want to get fired again!"
        Ron found what worked for him. He lives in his own house, drives
    his own vehicle, pays his bills and taxes, and has a social life, but
    sadly many Subject Matter Experts (SME) would say this is not
    successful employment because it is at a ``sheltered workshop.'' They
    would suggest that he is not experiencing the quality of life available
    to him through competitive integrated employment. They have a right to
    their opinion, but you will NOT convince Ron or his family that he
    should consider ``other options.'' We believe the opinion of Ron and
    those in similar situations should carry more value than the opinions
    of SMEs.
        The ideology that ``workshops are inherently bad and all
    individuals with disabilities can work in competitive integrated
    employment'' has unfortunately permeated into many Federal agencies to
    the point that providing services to those with the most significant
    disabilities has become a nightmare. I see us all on the same side,
    with differing views of how to accomplish a noble goal, but regrettably
    the current funding allocations gives the other side an unfair
    advantage.
                              examples of concerns
        Operating under the Department of Health and Human Services, the
    Administration on Intellectual and Developmental Disabilities and the
    Administration for Community Living include grantees that are outspoken
    in their dislike of center based work programs. The list includes:

      --Protection and Advocacy Systems (P&A)
      --Developmental Disabilities Councils (DD Councils)
      --University Center for Excellence in Developmental Disabilities
            (UCEDD)
      --President's Committee for People with Intellectual Disabilities
            (PCPID)

        These groups adamantly oppose our existence, but offer no viable
    solutions to increase employment for individuals with severe IDD. Their
    goal to remove all workshop employment as an option would reduce the
    number of employed individuals with disabilities. It would also create
    a problematic void in the lives of some of our most vulnerable citizens
    and the lives of their families. Without work centers, a large
    percentage of this group would end up sitting at home wasting away.
        Another area of concern is the significant number of dollars
    awarded to some non-profit organizations who openly advocate for the
    removal of workshop settings. This list is not exhaustive, but
    includes:

      --National Disability Rights Network (NDRN)--www.ndrn.org
      --Association of University Centers on Disabilities (AUCD)--
            www.aucd.org
      --National Disability Institute (NDI)--www.realeconomicimpact.org
      --National Association of Councils on Developmental Disabilities
            (NACDD)--www.nacdd.org
      --Disability Rights Education and Defense Fund (DREDF)--www.dredf.org
      --Autistic Self-Advocacy Network (ASAN)--www.autisticadvocacy.org

        These groups are quick to talk about capacity building, employer
    engagement, job carving, etc., but rarely, if ever, offer realistic
    tangible alternatives for the most vulnerable individuals with
    disabilities. The ones that are a challenge to create meaningful work
    for even in our controlled environments. The ones that cannot follow
    instructions, ones that need assistance in the restroom, the ones that
    do not understand the need to control their outbursts, the ones that
    wander and get lost, the ones that know no stranger, the ones that
    smile warmly, but do not have a clue what is being said, these, these
    are the ones that will sadly be impacted the most by the current
    mindset that workshops are outdated and completely ineffective.
                examples of grassroots efforts to support choice
        The following is a list of grassroots efforts that have sprung up
    across the nation to bring awareness the negative impact the current
    trends and philosophies are having on individuals with severe
    intellectual and developmental disabilities and their families. Please
    take the time to review their efforts.

        A-TEAM USA--www.ateamusa.net
        Dignity Has A Voice--www.dignityhasavoice.com
        Together for Choice--www.togetherforchoice.org
        National Council on Severe Autism--www.ncsautism.org

        These groups represent themselves or their loved ones impacted by
    disability policy and programs. Please consider their heartfelt
    unbiased positions.
                                    request
        I respectfully request that language be incorporated into all
    funding allocations associated with DHHS that requires recognition of
    center based employment services (workshops) as viable options for
    those whom elect those services.
        Respectfully submitted,

        Teresa Parker
                                     ______

                           Prepared Statement of PATH
        This testimony is submitted by Heather Ignatius on behalf of PATH,
    an international nonprofit organization that drives transformative
    innovation to save lives and improve health in low- and middle-income
    countries. PATH is appreciative of the opportunity afforded by Chairman
    Blunt, Ranking Member Murray, and members of the Subcommittee on Labor,
    Health and Human Services, Education and Related Agencies to submit
    written testimony regarding fiscal year 2021 funding for global health
    programs within the U.S. Department of Health and Human Services (HHS).
    PATH acknowledges and appreciates the strong leadership the Committee
    has shown in supporting HHS' work in this area--especially given the
    current pandemic--and we recommend that support continue. Therefore, we
    respectfully request that this Subcommittee provide no less than the
    fiscal year 2020 enacted level of $570.8 million to the CDC's Center
    for Global Heath (CGH) to sustain programming for global immunization,
    malaria, global health security, and research and development. Within
    CGH, we specifically support increases for CDC's Division of Global
    Health Protection, which should be increased from $183.2 million to
    $225 million to bolster capacity to prevent, detect, and rapidly
    respond to emerging diseases--such as COVID-19--in low- and middle-
    income countries. We also support an additional $50 million for the
    Infectious Disease Rapid Response Fund, $30 million for CGH's Division
    of Parasitic Diseases and Malaria, and $226 million for the Global
    Immunization Division. This funding allows CDC to save lives, reduce
    disease, and improve health around the world.
    The Vital Role of HHS in Global Health and Security
        We are grateful for the global health funding that has already been
    provided in supplementals over the last few months. In that time,
    COVID-19 has reached almost every country in the world--crippling
    economies, overwhelming healthcare systems, filling hospitals,
    dwindling supplies, and emptying public spaces. As the disease burden
    grows both within the U.S. and around the globe, so does the need for
    additional funding. As we learned from past outbreaks such as Ebola,
    investments that help countries contain diseases at the source are some
    of the most effective and important the U.S. can make. These
    investments have been used to train epidemiologists, engage affected
    communities, improve disease detection and tracking systems, build
    Emergency Operations Centers (EOCs), and upgrade labs. Such efforts
    have allowed partner countries to greatly shorten their response times
    to outbreaks and epidemics--for example, Cameroon was able to shorten
    their response timeline from 8 weeks to 24 hours.
        As a result of U.S. investments in the wake of Ebola, many
    countries are starting from a much stronger place as they face the
    COVID-19 pandemic. Countries have also drawn key lessons from the Ebola
    outbreak; for instance, the Democratic Republic of the Congo (DRC) has
    established two new coordination mechanisms to unite the country's top
    epidemiologists and virologists. In addition, their Emergency
    Operations Center (EOC), funded by the U.S. Centers for Disease Control
    and Prevention (CDC) through the agency's global health security
    investments and launched during the Ebola outbreak, will help the DRC
    continue to build capacity and reputation as a leader in outbreak
    management in Africa. Because of this investment, the Democratic
    Republic of the Congo is better prepared today than it was 5 years ago.
    However, despite the progress made by past investments, some
    populations will face COVID-related interruptions to essential services
    and will suffer from poor nutrition, outbreaks of vaccine-preventable
    diseases, and other health issues like HIV/AIDS and malaria. We must
    sustain support for these critical programs.
        Two other entities within HHS, the National Institutes of Health
    (NIH) and the Biomedical Advanced Research and Development Authority
    (BARDA), are also playing critical roles in protecting Americans from
    COVID-19 and other health security threats. NIH and BARDA are currently
    taking steps to speed the development and manufacturing of vaccines to
    prevent COVID-19, working with New Jersey-based Janssen Research &
    Development, part of Johnson & Johnson, as well as Moderna of
    Cambridge, Massachusetts. The NIH and BARDA also support the CDC's
    global work by building critical overseas capacity to stop the spread
    of deadly diseases and developing new tools and technologies to
    prevent, detect, and treat future outbreaks.
        The ongoing threat that COVID-19 and other infectious diseases pose
    to the health, economic security, and national security of the United
    States demands dedicated and steady funding for global health security.
    Just as we invest in a strong military in preparation for other
    security risks, Congress must ensure a continued robust investment in
    global health security preparedness, research and development, and
    response capability.
    Protecting the U.S. Through Leadership in Global Health Research and
            Development
        The ongoing COVID-19 pandemic is a clear call for investment in
    America's capacity to rapidly develop and deploy new technologies that
    can prevent, detect, and treat emerging global health threats. The U.S.
    leads the world in research and development (R&D) for tools that solve
    some of humanity's most pressing health problems. The annual G-Finder
    report from Policy Cures Research estimates that in 2018, the U.S.
    contributed $1.598 billion through NIH and $27 million through CDC to
    the development of global health products. Incredible progress is
    possible when the U.S. puts the full power of its resources to work.
    For example, in response to the 2014 Ebola outbreak, U.S. funding for
    Ebola R&D increased from negligible levels in 2013, to $101 million in
    2014, to $298 million in 2015--resulting in the registration of four
    new products for Ebola and select viral hemorrhagic fevers, as well as
    the advancement of 11 new U.S.-supported Ebola products. These efforts
    were supported by the CDC as well as NIH, BARDA, and agencies outside
    HHS, which all played unique and critical roles in the product
    development process.
        However, as a nation we have failed to sustain investment in a
    suite of technologies that will help us respond to the disease threats
    most likely to impact Americans and populations around the globe. For
    example, development of a promising SARS vaccine was halted in 2016 due
    to lack of funding--only to be re-started after the spread of COVID-19.
    Congress must ensure that the U.S. is making smarter and sustained
    investments for just-in-case development and just-in-time delivery of
    the tools we will need for the most likely threats to human health.
        The National Biodefense Strategy rightly recognizes the importance
    of investments in R&D to prepare for future outbreaks, calling for
    funding and leadership in emerging technologies as R&D is integrated
    into Federal planning. Today more than ever, the U.S. is at the
    forefront of global health innovation because of long-term investment
    in NIH, CDC, and BARDA. To accelerate progress toward lifesaving tools
    for a range of health threats, we call for maintaining robust funding
    for NIH and particularly for the NIAID and the Fogarty International
    Center; providing funding to match CDC's increased responsibilities in
    global health and security for the Center for Global Health and the
    National Center for Emerging Zoonotic and Infectious Diseases; and
    supporting funding for BARDA's critical work in emerging infectious
    diseases. As a complement to continued investment in BARDA and NIH, the
    U.S. should invest in the Coalition for Epidemic Preparedness
    Innovations (CEPI) which is working to advance at least nine COVID-19
    vaccine candidates. Investment in CEPI would allow the U.S. to leverage
    funding from other global donors and ensure the U.S. can influence the
    impact and outcome of CEPI's efforts.
        Successful implementation of these components requires urgent
    coordination across agencies and strategic investments. Congress should
    monitor progress on investments in emerging technologies and medical
    countermeasures, as well as the integration of R&D into Federal
    planning, including facilitating policies and incentives across
    interagency response R&D efforts.
    Immunization Programs During COVID-19 and Beyond
        HHS is also achieving complementary global health and security
    goals through investment in immunization, with most vaccine delivery
    activities overseen by CDC's Global Immunization Division. Vaccines are
    among the most high-impact and cost-effective tools available today to
    combat infectious disease threats-many vaccine-preventable diseases
    were once global pandemics much like COVID-19. This pandemic is a stark
    reminder of how fast an outbreak can spread without a vaccine to
    protect us. Thanks to immunization, outbreaks of childhood diseases
    such as polio, measles, diphtheria, and pertussis are preventable, and
    communities are protected from some of the most infectious and lethal
    pathogens. Immunization programs prevent an estimated 2.5 million
    deaths each year among children under the age of five; these programs
    also bolster local health systems and enable better disease detection.
    Even before the COVID-19 pandemic, vaccines for measles, polio, and
    other diseases were out of reach for 20 million children under the age
    of one every year. In 2018, more than 13 million children below the age
    of one globally did not receive any vaccines at all, many of whom live
    in countries with weak health systems. Given these difficulties, the
    disruption to immunization programs caused by COVID-19 could create
    pathways to disastrous outbreaks in 2020 and well beyond. As healthcare
    is disrupted globally, maintaining global vaccination efforts is
    critical to preventing needless deaths.
    Fighting to Eliminate Malaria
        The CDC plays a critical role in the fight against malaria, as co-
    implementer of the President's Malaria Initiative (PMI)--alongside the
    U.S. Agency for International Development--as well as through its
    Parasitic Diseases and Malaria program. These programs provide crucial
    technical assistance, with a focus on monitoring, evaluation, and
    surveillance, as well as operational and implementation research.
    Malaria prevention and treatment programs have prevented more than
    seven million deaths globally since 2000; as the world responds to
    COVID-19, we must safeguard these incredible gains. This progress could
    not have been accomplished without sustained U.S. commitment. Into the
    future, eliminating malaria by 2040 could save 11 million additional
    lives and unlock an estimated $2 trillion in economic benefits from
    gains in productivity and health savings.
        According to the World Health Organization's World Malaria Report,
    nearly half the world's population lives in areas at risk of malaria--
    there were an estimated 228 million cases and 405,000 deaths from the
    disease in 2018 alone. It is also important to note that malaria deaths
    increase during pandemics, when sick people are unable to access
    healthcare in overburdened health systems. The COVID-19 pandemic is
    having a catastrophic impact on the most vulnerable communities
    worldwide, threatening our progress against malaria. This year, the
    Global Fund celebrated the distribution of the 2 billionth bed net to
    prevent malaria infections--but if COVID-19 leads to severe disruption
    of malaria services such as insecticide-treated net campaigns and
    access to antimalarial medicines, malaria deaths in sub-Saharan Africa
    could double in coming years. To reduce the pressure that COVID-19 is
    exerting on health systems, it is critical that we continue to deliver
    malaria interventions at the community level. As PMI has expanded,
    CDC's mandate has grown, but its budget for malaria has remained
    stagnant. In fiscal year 2021, Congress should fully fund PMI and
    increase funding for the CDC Division of Parasitic Diseases and Malaria
    (DPDM) program from $26 million to $30 million, to better track, treat,
    and test for malaria, and to ensure these services continue in the
    midst of a global health crisis.
    An investment in Health, at Home and Around the World
        With strong funding for global health programs within HHS, the
    department will be able to improve access to proven health
    interventions in the communities where they are needed most, as well as
    respond to the emerging challenge of COVID-19. By fully funding global
    health and BARDA accounts, the U.S. can prevent the further spread of
    disease, protect the health of Americans, and minimize the impact on
    vulnerable populations worldwide.

        [This statement was submitted by Heather Ignatius, Director, US and
    Global
    Advocacy, PATH.]
                                     ______

           Prepared Statement of the Personalized Medicine Coalition
        Chairman Blunt, Ranking Member Murray and distinguished members of
    the subcommittee, the Personalized Medicine Coalition (PMC) appreciates
    the opportunity to submit testimony on the National Institutes of
    Health (NIH) fiscal year 2021 appropriations. PMC is a nonprofit
    education and advocacy organization comprised of more than 230
    institutions from across the healthcare spectrum. As the subcommittee
    begins work on the fiscal year 2021 Labor, Health and Human Services,
    Education and Related Agencies appropriations bill, we ask that the NIH
    receive an appropriation of at least $44.7 billion in fiscal year 2021,
    a $3 billion increase over the NIH's program level funding in fiscal
    year 2020.
        At this historic moment for medicine and humanity, biomedical
    research has perhaps never been more important. We sincerely appreciate
    the additional funding provided for NIH to respond to COVID-19 across
    the recent supplemental appropriations bills. PMC commends the NIH's
    leadership during the current COVID-19 pandemic and recognizes that
    these emergency resources are playing an important role in identifying
    therapies and vaccines, as well as improving testing and diagnostic
    methods. We also believe NIH-funded basic research is critical to our
    understanding of how the virus expresses itself across populations and
    individuals to eventually develop personalized treatment plans for
    patients. Increasing funding for the agency's efforts to lead
    scientific discovery across other disease areas, however, is not any
    less important because of COVID-19. Therefore, we encourage the
    Committee to consider a $3 billion increase in program level funding in
    addition to any emergency appropriations related to COVID-19 research
    and relief and in addition to funding for the Innovation Account
    established in the 21st Century Cures Act. This funding level would
    allow for meaningful growth above inflation in the NIH's base budget
    and expand the agency's capacity to support promising science in all
    disciplines, including personalized medicine.
        Personalized medicine, also called precision or individualized
    medicine, is an evolving field in which physicians use diagnostic tests
    to identify specific biological markers, often genetic, that help
    determine which medical treatments will work best for each patient. By
    combining this information with an individual's medical records,
    circumstances, and values, personalized medicine allows doctors and
    patients to develop targeted treatment and prevention plans.
    Personalized healthcare promises to detect the onset of disease and
    pre-empt its progression, as well as improve the quality,
    accessibility, and affordability of healthcare.\1\
    ---------------------------------------------------------------------------
        \1\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
    Corporate/file/The-Personalized-Medicine-Report1.pdf.
    ---------------------------------------------------------------------------
                  i. the role of nih in personalized medicine
        For each of the past 5 years, personalized medicines have accounted
    for a quarter or more of the new drugs approved by the U.S. Food and
    Drug Administration (FDA), with a record of 42 percent in 2018.\2\ In
    2005, personalized medicines accounted for only 5 percent of new drug
    approvals.\3\ The most recent approvals address the root causes of rare
    diseases in many patients for whom there were no options before; expand
    treatment options for cancer patients; and target therapies to
    responder populations.
    ---------------------------------------------------------------------------
        \2\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
    Corporate/file/PM_at_FDA_
    The_Scope_and_Significance_of_Progress_in_2019.pdf.
        \3\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
    Corporate/file/PM_at_FDA_
    The_Scope _and_Significance_of_Progress_in_2019.pdf.
    ---------------------------------------------------------------------------
        As the primary Federal agency conducting and supporting basic and
    translational research investigating the causes, treatments and cures
    for both common and rare diseases, NIH is leading scientific discovery
    for personalized medicines. Many institutes and centers at the NIH are
    supporting research that is informing the development of personalized
    medicines, including the National Human Genome Research Institute
    (NHGRI), the National Cancer Institute (NCI), the National Institute on
    Aging (NIA), and the National Heart, Lung and Blood Institute (NHIBI).
    An increase for NIH in fiscal year 2021 would protect its foundational
    role in the identification and development of personalized medicines.
                ii. sustaining basic and translational research
        Increased investments in the work of the NIH in fiscal year 2021
    are justified in part by emerging scientific insights that present new
    opportunities in personalized medicine. By increasing NIH's budget for
    fiscal year 2021, Congress can accelerate the pace at which these
    insights are translated into improved care for American patients.
        Scientific discovery in personalized medicine begins with basic
    research that gathers fundamental knowledge about the molecular basis
    of a disease and with translational research aimed at applying that
    knowledge to develop a treatment or cure. Basic research has
    contributed to the development of more than 180 personalized medicines
    that are on the market and available for patients as of 2020.\4,5\
    ---------------------------------------------------------------------------
        \4\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
    Corporate/file/The-Personalized-Medicine-Report1.pdf.
        \5\ http://www.personalizedmedicinecoalition.org/Resources/
    Personalized_Medicine_at_FDA _An_Annual_Research_Report.
    ---------------------------------------------------------------------------
        The future of cancer care, for example, is expected to be
    profoundly influenced by the use of biomarkers that will guide
    researchers and physicians at every stage from drug development to
    disease management. In 2018, 55 percent of all oncology trials involved
    the use of biomarkers, compared to 15 percent in 2000.\6\ According to
    the NIH's latest Annual Report to the Nation on the Status of Cancer,
    cancer death rates continued to decline 1.5 percent on average per year
    from 2001 to 2017 across all ages, genders, and racial and ethnic
    groups.\7\ This success can be attributed to significant progress in
    cancer prevention, early detection, and treatment as a result of
    investments in basic research.
    ---------------------------------------------------------------------------
        \6\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
    Corporate/file/The_Evolution
    _of_Biomarker_Use_in_Clinical_Trials_for_Cancer_Treatments.pdf.
        \7\ https://www.nih.gov/news-events/news-releases/annual-report-
    nation-cancer-death-rates-continue-decline-
    2020?utm_source=sfmc&utm_medium=email&utm_campaign=adhoc&utm_
    content=newsletter.
    ---------------------------------------------------------------------------
        Basic genomics research also offers opportunities beyond oncology,
    especially for rare diseases. Rare diseases affect an estimated 25 to
    30 million Americans, and with advances in genomics, the molecular
    causes of 6,500 rare diseases have been identified--but only about 5
    percent have an FDA-approved treatment. In 2019, NIH awarded
    approximately $38 million in grants to 20 teams and a data management
    center to study a wide range of rare diseases.\8\ Research groups,
    which include scientists, clinicians, patients, families, and
    advocates, are collaborating on natural history studies, measuring
    treatment outcomes, and studying biomarkers that provide indicators of
    how a drug is working in patients. Pooling patients, data, experiences,
    and resources promises to lead to more successful clinical trials
    sooner for rare disease patients who presently have few or no treatment
    options.
    ---------------------------------------------------------------------------
        \8\ https://ncats.nih.gov/news/releases/2019/rdcrn-funding.
    ---------------------------------------------------------------------------
        There are other people living with highly prevalent diseases that
    are still in need of better treatments and a cure. The Alzheimer's
    Association estimates that 5.8 million Americans are living with
    Alzheimer's disease, for example.\9\ Despite increasing numbers of
    Alzheimer's diagnoses, there are no treatments that can prevent or
    alter the course of the disease. Researchers are studying the genetic
    underpinnings of Alzheimer's disease to more fully understand its
    complexity. The Accelerating Medicines Partnership for Alzheimer's
    disease led by the NIH has identified over 500 drug targets. To build
    upon this progress, in 2019 the NIH launched two new research centers
    focused on accelerating the discovery and development of treatments and
    cures for people living with Alzheimer's.\10\
    ---------------------------------------------------------------------------
        \9\ https://www.alz.org/media/Documents/alzheimers-facts-and-
    figures_1.pdf.
        \10\ https://www.nih.gov/news-events/news-releases/new-nih-funded-
    translational-research-centers-speed-diversify-alzheimers-drug-
    discovery.
    ---------------------------------------------------------------------------
        The NIH is also leading efforts to develop tools and resources in
    gene therapy and artificial intelligence that will facilitate the
    identification and development of new personalized medicines for common
    and rare diseases. Wait times to produce vectors--or the ``delivery
    vehicles''--in gene therapy and gene editing studies currently run one
    to 2 years due to their resource intensity.\11\ Funding in fiscal year
    2021 would enable the NIH to create a consortium addressing this
    bottleneck to bringing new gene therapies to clinical trials for
    patients.
    ---------------------------------------------------------------------------
        \11\ https://docs.house.gov/meetings/AP/AP07/20200304/110616/HHRG-
    116-AP07-Wstate-CollinsF-20200304.pdf.
    ---------------------------------------------------------------------------
                iii. accelerating personalized medicine research
        Increasing the NIH's base budget will also ensure that the agency
    has the resources necessary to advance the longstanding aspects of its
    mission without de-prioritizing supplemental initiatives in
    personalized medicine recently supported by Congress.
        The 21st Century Cures Act (Cures Act) provided support for
    important initiatives that will benefit personalized medicine. The
    first initiative, the All of Us\TM\ Research Program, launched in May
    of 2018. All of Us is collecting genetic and health information from
    one million volunteers for a decades-long research project. By mid-
    December 2019, over 305,000 individuals consented to participate and
    over 235,000 have fully enrolled. More than 80 percent of those
    individuals were from groups historically underrepresented in research,
    such as seniors, women, Hispanics and Latinos, African Americans, Asian
    Americans and members of the LGBTQ community.\12\ This program is
    creating an invaluable biomedical data set that is inclusive of all
    Americans and will inform the development of new personalized
    medicines. Program officials plan to begin returning individual genetic
    results to participants this year.\13\
    ---------------------------------------------------------------------------
        \12\ https://officeofbudget.od.nih.gov/pdfs/fiscal year 21/br/1-
    OverviewVolumeSingleFile-toPrint.
    pdf.
        \13\ https://officeofbudget.od.nih.gov/pdfs/fiscal year 21/br/1-
    OverviewVolumeSingleFile-toPrint.
    pdf.
    ---------------------------------------------------------------------------
        All of Us will continue to refine and streamline participant
    enrollment while focusing on retaining current participants. The
    program also plans to give researchers access to additional data that
    include participants' genomic information, genetic propensity for
    disease or differential medication response, and visualization of basic
    electronic health record data for use in their research to improve the
    diagnosis, treatment, and prevention of disease. To facilitate the use
    of data from All of Us and other cohort studies, the NHGRI plans to
    establish a new research program developing cutting-edge data and
    informatics tools for genomic research.\14\
    ---------------------------------------------------------------------------
        \14\ https://www.genome.gov/news/news-release/NHGRI-establishes-
    new-intramural-precision-health-research-program.
    ---------------------------------------------------------------------------
        The Cancer Moonshot is a second initiative supported by the Cures
    Act. It aims to transform the way cancer research is conducted by
    supporting immunotherapy networks, such as the Partnership for
    Accelerating Cancer Therapies (PACT). Through PACT, the NIH is
    collaborating with 11 pharmaceutical companies and the Foundation for
    NIH to identify, develop, and validate biomarkers to advance new cancer
    immunotherapy treatments. Improvements in immunotherapy over the past
    decade have driven declines in mortality from lung cancer and melanoma;
    however, progress in reducing rates for other cancers, including
    colorectal, breast, and prostate cancers, has slowed.\15\ These
    collaborations promise to discover new cancer treatments and harness
    the ability of the body's immune system to fight cancer.
    ---------------------------------------------------------------------------
        \15\ https://www.cancer.org/latest-news/facts-and-figures-
    2020.html.
    ---------------------------------------------------------------------------
        The Cures Act authorizes funding for these initiatives through the
    Innovation Fund. The $3 billion increase requested by PMC in fiscal
    year 2021 would ensure that the $404 million authorized by the Cures
    Act this year would supplement the NIH's base budget, as Congress
    intended, and thereby allow these important initiatives to continue.
                                 iv. conclusion
        PMC appreciates the opportunity to highlight the NIH's importance
    to the continued success of personalized medicine. The subcommittee's
    support for a $3 billion increase over the NIH's program level funding
    in fiscal year 2020, in addition to supplemental funding received from
    the Cures Act and COVID-19 emergency appropriations, will bring us
    closer to a future in which every patient benefits from an
    individualized approach to healthcare. PMC will gladly provide
    additional information on the programs described in our testimony upon
    request.

        [This statement was submitted by Cynthia A. Bens, Senior Vice
    President, Public Policy, Personalized Medicine Coalition.]
                                     ______

     Prepared Statement of the Physical Science Education Policy Coalition
        Dear Chairman Blunt, Ranking Member Murray, and Members of the
    Subcommittee:
        The Physical Science Education Policy Coalition (PSEPC) is a
    diverse group of scientific non-profit organizations that works to
    promote issues regarding all aspects of physical science education to
    benefit both students and teachers.
        We urge you to reject the White House's budget proposal for the
    Department of Education to eliminate and replace the following
    programs:

      --Supporting Effective Instruction State Grants
      --Student Support and Academic Enhancement Grants
      --21st Century Community Learning Centers

        Congress has authorized these programs to receive funding under
    Title II and Title IV of Public Law No: 114-95, the Every Student
    Succeeds Act (ESSA). ESSA helps bolster this country's domestic STEM
    talent pipeline--and therefore our global competitiveness--by assisting
    States in seizing the greatest opportunity to strengthen their own
    physical science and STEM education programs. Therefore, we urge you to
    fund these programs at current fiscal year 2020 authorized levels in
    fiscal year 2021 appropriations.
        Congress has shown that it appreciates the importance of high-
    quality high school physical science teachers and informal STEM
    learning programs by previously rejecting the White House's proposed
    abolition of these programs for fiscal year 2019 and fiscal year 2020.
    Instead, Congress funded them as part of the fiscal year 2019 Defense,
    Labor-HHS-ED Consolidated Appropriations Act, and the fiscal year 2020
    Further Consolidated Appropriations Act (Public Laws 115-245 and 116-94
    respectively).
        The White House's proposal for fiscal year 2021 would consolidate
    29 existing programs,\1\ including the three listed above, into ``a new
    $19.4 billion block grant to States.'' But according to the Department
    of Education,\2\ only $6.8 billion would be appropriated for fiscal
    year 2021, while the remaining funds would serve as an advance for
    fiscal year 2022. Given that the Grants to Local Educational Agencies
    under Title 1 of the Elementary and Secondary Education Act of 1965
    (Education for the Disadvantaged) alone is currently funded at $15.9
    billion, it is clear that it will be impossible to maintain current
    funding levels for these programs in fiscal year 2021 should the White
    House's proposal be accepted. Furthermore, even in subsequent years
    when previously appropriated advances contribute to the Department of
    Education's total Budget authority, a $19.4 billion grant will still
    reduce the amount of money which States receive by $4.7 billion. Put
    simply, this proposed consolidation is ultimately a budget cut.
    ---------------------------------------------------------------------------
        \1\ The White House Budget Request https://www.whitehouse.gov/wp-
    content/uploads/2020/02/budget_fy21.pdf.
        \2\ Department of Education fiscal year 2021 President's Budget
    https://www2.ed.gov/about/overview/budget/budget21/21pbapt.pdf.
    ---------------------------------------------------------------------------
        The Supporting Effective Instruction State Grants, Student Support
    and Academic Enhancement Grants, 21st Century Community Learning
    Centers programs exist to solve persistent and troublesome problems in
    education. In Missouri, the ESSA Consolidated State Plan published by
    the Missouri Department of Elementary and Secondary Education (MO-DESE)
    in 2019 \3\ states, ``MO-DESE has a single area of critical need for
    state-level activities under Title IV, Part A, Subpart 1. A recent
    statewide analysis of advanced course offerings in mathematics and
    science indicated that a significant number of high schools do not
    offer, and consequently a significant number of students do not have
    access to, advanced coursework.'' Table 1 (below) presents data from
    the report that provides examples of courses that have limited
    availability to students. During 2016, 2017, and 2018, 3 years analyzed
    in a recent statewide study, 451 high schools in Missouri--or 86
    percent of all high schools in the state--have failed to offer a single
    physics course. This equated to more than 26,000 junior and senior
    students lacking access to a physics course during the 2016-17 school
    year.
    ---------------------------------------------------------------------------
        \3\ Every Student Succeeds Act, Missouri's Consolidated State Plan
    2019, p. 62 https://dese.mo.gov/sites/default/files/qs-ESSA-Plan-
    2019.pdf.
    ---------------------------------------------------------------------------
                                    table 1

        In Oklahoma, the 2018 Oklahoma Educator Supply & Demand Report \4\
    found that the overall number of educators employed in Oklahoma's
    public schools who have certificates in math and science has
    consistently declined between 2012-13 and 2017-18. Certificates in math
    and sciences declined by 10 percent and 21 percent, respectively.
    Instead of loosening requirements for entry into the profession to
    solve this problem, the Oklahoma State Department of Education (OSDE)
    assembled a Teacher Shortage Task Force to implement changes that would
    strengthen the teacher pipeline, thereby bolstering recruitment and
    retention efforts in the state. The Oklahoma ESSA Consolidated State
    Plan \5\ says, ``The complete elimination of Title II, Part A funding
    would severely hamper the state's ability to achieve its goal of
    reducing its need for emergency certified teachers. Title II, Part A
    dollars are critical to Oklahoma's efforts to enhance meaningful
    professional development offerings, provide support to teachers in
    implementing rigorous academic standards and equip instructional
    leaders who can support teachers and ultimately increase academic
    achievement for all students.'' Unfortunately, the issues described are
    components of a larger, nationwide, problem. Across the United States,
    there is a significant shortage of highly qualified middle and high
    school physics teachers. In a nationwide survey of teachers in US high
    schools who taught at least one physics class, only 40 percent have a
    major or minor in physics or physics education.\6\
    ---------------------------------------------------------------------------
        \4\ 2018 Oklahoma Educator Supply & Demand Report, p. 52-63 https:/
    /sde.ok.gov/sites/default/files/documents/files/
    Oklahoma%20Teacher%20Supply%20and%20Dema
    nd%20Report%202018%20February%20Update.pdf.
        \5\ Oklahoma ESSA Consolidated State Plan, p. 146 https://
    www2.ed.gov/admins/lead/account/stateplan17/
    okconsolidatedstateplan.pdf.
        \6\ Who Teaches High School Physics? https://www.aip.org/sites/
    default/files/statistics/highschool/hs-whoteaches-13.pdf.
    ---------------------------------------------------------------------------
        The solutions to the problems in Missouri, Oklahoma, and the
    country at large depend on Federal funding. The Supporting Effective
    Instruction State Grants (Title II-A) program helps by allowing States
    to fund grants for teacher preparation programs. Title II-A funded
    teacher preparation programs train teachers to deliver robust, high-
    quality STEM education. The Student Support and Academic Enhancement
    Grants (Title IV-A) and the 21st Century Community Learning Centers
    (Title IV-B) gives States funding for out of school STEM programs to
    enhance learning. Alongside organizations specifically dedicated to
    enhancing the training of educators, such as PhysTec for the physical
    sciences,\7\ these programs can solve the teacher shortage issue and
    give American students world class educations in physical science and
    other STEM fields.
    ---------------------------------------------------------------------------
        \7\ About PhysTec https://www.phystec.org/webdocs/AboutPhysTEC.cfm.
    ---------------------------------------------------------------------------
        A strong physical science background prepares students for success
    in their university courses and careers, but this success is impossible
    without highly qualified teachers who have deep knowledge of physical
    science. We should all strive to ensure that our children receive the
    best education possible.

        Endorsed by the following member organizations:

        American Association of Physicists in Medicine
        American Association of Physics Teachers
        American Astronomical Society
        American Institute of Physics
        American Physical Society
        OSA-The Optical Society

        [This statement was submitted by Mr. Elborz D. Mazanderan, American
    Institute of Physics, Physical Science Education Policy Coalition.]
                                     ______

      Prepared Statement of the Physician Assistant Education Association
        On behalf of the 254 accredited physician assistant (PA) education
    programs in the United States, the Physician Assistant Education
    Association (PAEA) welcomes the opportunity to submit the following
    testimony regarding the critical need for continued investment in
    health professions education in fiscal year 2021. As illustrated
    starkly by the COVID-19 pandemic and other emerging health crises,
    ensuring that patients have access to timely, high-quality care is
    dependent upon a strong Federal commitment to improving the supply,
    distribution, and diversity of the national health workforce. As such,
    PAEA joins with our colleagues to request a total of $790 million in
    fiscal year 2021 for both the Title VII health professions and Title
    VIII nursing programs. As the health professions education community
    works to prepare the future health workforce, this level of support
    will represent the investment necessary for programs to address key
    challenges, pursue innovation, and promote quality patient care.
            background on pa practice/current issues in pa education
        Since the creation of the profession in the mid-1960s in response
    to growing physician shortages, PAs have played a critical role in the
    practice of medicine by ensuring timely access to quality care,
    particularly in rural and underserved areas. Following the completion
    of a rigorous, seven semester, curriculum consisting of both classroom-
    based and clinical education, PAs have broad flexibility to fill
    workforce gaps based upon their generalist training. During their
    clinical education, PA students are required to complete one calendar
    year of core rotations in family medicine, emergency medicine, internal
    medicine, surgery, pediatrics, women's health, and behavioral health--
    in addition to electives--providing them with the skill set necessary
    for flexible practice throughout their careers. Currently, a plurality
    of PAs practice in primary care, with over 25,000 primary care PAs
    practicing in communities throughout the United States.\1\
    ---------------------------------------------------------------------------
        \1\ National Commission on Certification of Physician Assistants
    (2019). 2018 Statistical Profile of Certified Physician Assistants by
    Specialty. Retrieved from: https://
    prodcmsstoragesa.blob.core.windows.net/uploads/files/
    2018StatisticalProfileofCertifiedPAsbySpecialty1.pdf.
    ---------------------------------------------------------------------------
        To meet the projected 31 percent growth in PA practice openings
    from 2018-2028, the number of accredited PA programs nationwide has
    grown significantly in recent years, rising from 149 in 2010 to 250 in
    2020, with more than 50 additional programs in development.\2\ While
    this remarkable expansion appropriately reflects demand for PA
    services, the rapid rate of growth has presented formidable challenges
    as PA educators work to provide high-quality education to students. The
    most acute concern is increased competition for clinical training sites
    and clinician preceptors--a supply that has significantly contracted as
    a result of COVID-19. Shortages of clinical training sites prior to the
    pandemic have resulted in a growing number of programs being forced to
    pay for training sites. According to PAEA's most recent survey of
    members, 52 percent of programs nationwide, up from 27.9 percent as of
    2015, are now paying for some or all of their clinical rotations at an
    average cost of $245 per week, per student.\3\ Given the current lack
    of dedicated Federal funding to support PA clinical training comparable
    to Graduate Medical Education for physicians, this cost has ultimately
    been borne by students in the form of higher tuition.
    ---------------------------------------------------------------------------
        \2\ Bureau of Labor Statistics. (2019). Physician Assistants.
    Retrieved from https://www.bls.gov/ooh/healthcare/physician-
    assistants.htm.
        \3\ Unpublished data. Physician Assistant Education Association.
    (anticipated publication 2020). By the Numbers: Program Report 35: Data
    from the 2019 Program Survey.
    ---------------------------------------------------------------------------
        In the absence of a direct funding stream for PA clinical training,
    a small number of PA programs have traditionally relied upon existing
    Title VII programs to facilitate limited training opportunities. For
    example, Primary Care Training and Enhancement (PCTE) grants have long
    served as a critical resource for PA programs seeking to direct
    graduates to practice in primary care through curriculum development
    and clinical training experiences. In fiscal year 18, 577 PA students
    graduated from a PCTE-funded program, well in excess of the 200 student
    target set by HRSA.\4\ In addition to PCTE grants, Area Health
    Education Centers (AHECs) partner with PA programs, along with other
    health professions programs, to facilitate clinical rotations in rural
    and underserved settings. In fiscal year 2018, AHECs throughout the
    country supported clinical rotations for 12,385 health professions
    students, including PA students.\4\ In fiscal year 2020, Congress also
    appropriated more than $26 million to establish a Mental and Substance
    Use Disorders Workforce Training Demonstration to support, among other
    priorities, clinical rotations in behavioral health. Given the severity
    of clinical training site shortages for PA programs, PAEA specifically
    urges the Subcommittee to prioritize increased appropriations for PCTE
    grants, AHECs, and the Mental and Substance Use Disorders Workforce
    Training Demonstration in fiscal year 2021.
    ---------------------------------------------------------------------------
        \4\ Health Resources and Services Administration. (2020).
    Justification of Estimates for Appropriations Committees. Retrieved
    from: https://www.hrsa.gov/sites/default/files/hrsa/about/budget/
    budget-justification-fy2021.pdf.
    ---------------------------------------------------------------------------
                        covid-19 and maternal mortality
        In addition to addressing the broader clinical training site
    crisis, PAEA is also committed to preparing the future PA workforce to
    respond to emerging public health issues, such as the COVID-19 pandemic
    and maternal mortality. As an organization, PAEA's vision is Health for
    All. The achievement of this vision requires the elimination of
    persistent health disparities, and PAEA is particularly concerned with
    both the elimination of clinical training opportunities for students as
    a result of COVID-19 and rising rates of maternal morbidity and
    mortality disproportionately impacting African American, Native
    American, and Alaska Native women. According to a 2019 report issued by
    the CDC, these women die from largely preventable pregnancy-related
    causes at a rate three times higher than white women.\5\ PAs have a
    critical role in addressing maternal health disparities once they enter
    practice, however, competition for clinical training experiences in
    women's health has been a particular barrier to ensuring students are
    best-equipped to meet this challenge. According to a recent survey
    report of PAEA member programs, 83.5 percent of programs that pay for
    clinical sites currently pay for women's health rotations--the highest
    rate of any required PA specialty rotation.\6\ Another report revealed
    that 83.9 percent of programs characterized women's rotations to be
    very difficult or difficult to obtain.\7\ To begin addressing this
    issue, PAEA has endorsed H.R. 4995--the Maternal Health Quality
    Improvement Act--which would authorize the Rural Maternal and Obstetric
    Care Training Demonstration, a program which would support women's
    health clinical training experiences in rural areas for PA and other
    health professions students as a means of increasing access to care. In
    fiscal year 2021, PAEA urges the Subcommittee to provide appropriations
    at the proposed authorization level of $5 million.
    ---------------------------------------------------------------------------
        \5\ Centers for Disease Control and Prevention. (2019). Vital
    Signs: Pregnancy-Related Deaths, United States, 2011-2015, and
    Strategies for Prevention, 13 States, 2013-2017. Retrieved from:
    https://www.cdc.gov/mmwr/volumes/68/wr/mm6818e1.htm?s_cid=mm6818e1_w.
        \6\ Physician Assistant Education Association. (2018). By the
    Numbers: Curriculum Report 3: Data from the 2017 Clinical Curriculum
    Survey. Retrieved from: https://paeaonline.org/wp-content/uploads/2018/
    10/paea-curriculum-report-33-20181015.pdf.
        \7\ Physician Assistant Education Association, By the Numbers: 30th
    Report on Physician Assistant Educational Programs in the United
    States, 2015, Washington, DC: PAEA, 2015. doi: 10.17538/btn2015.001.
    ---------------------------------------------------------------------------
                              promoting diversity
        PAEA strongly concurs with the body of evidence supporting the
    value of a diverse health workforce to address broader disparities
    through the provision of culturally competent care.\8\ Traditionally,
    underrepresented minority students have faced daunting financial and
    other barriers in entering health professions education. According to
    PAEA's most recent Student Report, these barriers have resulted in only
    4 percent of matriculating PA students being African American and 7.8
    percent being Hispanic compared to 13.4 percent and 18.3 percent of the
    general population, respectively.\9\ PAEA is grateful for existing
    Federal investments to promote diversity, such as Scholarships for
    Disadvantaged Students (SDS), which provides PA programs and other
    disciplines with the resources necessary to promote access to health
    professions education for disadvantaged students who are more likely to
    practice in underserved areas following graduation. In fiscal year
    2018, SDS awards supported the training of 3,155 health professions
    students, exceeding HRSA's target of 2,930 students.\4\ Prior to
    matriculation, the Health Careers Opportunity Program (HCOP) plays a
    complementary role by investing in K-16 health education programs that
    help recruit diverse and disadvantaged students into the health
    professions pipeline. In fiscal year 2018, 4,082 disadvantaged students
    participated in structured HCOP programs, double HRSA's target of 2,000
    students.\4\ PAEA strongly supports continued and increased investments
    in the SDS and HCOP programs in fiscal year 2021.
    ---------------------------------------------------------------------------
        \8\ Cohen, J.J., Gabriel, B.A., & Terrell C. (2002). The Case for
    Diversity in the Health Care Workforce. Health Affairs, 21(5). 90-102.
    https://www.healthaffairs.org/doi/pdf/10.1377/hlthaff.21.5.90.
        \9\ Physician Assistant Education Association. (2019). By the
    Numbers: Student Report 3: Data from the 2018 Matriculating Student and
    End of Program Surveys. Retrieved from: https://paeaonline.org/wp-
    content/uploads/2019/08/sr3-program-report-20190814.pdf.
    ---------------------------------------------------------------------------
                        fiscal year 2021 recommendation
        As PA education programs across the nation work to prepare the
    future PA workforce to address emerging health crises, continued
    Federal commitment to address challenges such as clinical training site
    shortages and workforce diversity is critical. To improve the supply,
    distribution, and diversity of the national health workforce, PAEA
    joins in the request of the health professions education community for
    $790 million to support the Title VII health professions and Title VIII
    nursing programs in fiscal year 2021. PAEA thanks the Subcommittee for
    the opportunity to submit testimony and looks forward to continuing to
    serve as a resource to members and staff.

        [This statement was submitted by Howard Straker, EdD, MPH, PA-C,
    President, Physician Assistant Education Association.]
                                     ______

       Prepared Statement of the Planned Parenthood Federation of America
        Dear Chairman Blunt and Ranking Member Murray,
        Planned Parenthood is the nation's leading women's healthcare
    provider and advocate and a trusted, nonprofit source of primary and
    preventive care for women, men, and young people in communities across
    the U.S as well as the nation's largest provider of sex education. As
    experts in sexual and reproductive healthcare, we reach 2.4 million
    people in our health centers, 1.2 million people through educational
    programs, and see 177 million visits to our website every year. Backed
    by more than 13 million supporters, Planned Parenthood Action Fund
    works every day to defend access to healthcare and advance reproductive
    rights at home and abroad. Through our international arm, Planned
    Parenthood Global, we provide financial and technical support to over
    100 innovative partners in nine countries in Africa and Latin America.
        In the past decades, there has been considerable progress made
    related to sexual and reproductive healthcare. For example, a 2016
    Guttmacher documented that the U.S. was currently experiencing the
    lowest level of unintended pregnancy in 30 years \1\ and the lowest
    rate of abortion since Roe v. Wade was decided in 1973.\2\ Much of this
    progress is due in part to increased access to healthcare services,
    driven by strategic investments in family planning, access to birth
    control, and other healthcare programs, and increased access to high-
    quality, comprehensive sex education.
    ---------------------------------------------------------------------------
        \1\ Guttmacher Institute. U.S. Unintended Pregnancy Rate Falls to
    30-Year Low; Declines Seen in Almost All Groups, but Disparities
    Remain. March 2, 2016. https://www.guttmacher.org/news-release/2016/us-
    unintended-pregnancy-rate-falls-30-year-low-declines-seen-almost-all-
    groups. Accessed March 10, 2020.
        \2\ New York Times. America's Abortion Rate Has Dropped to Its
    Lowest Ever. September 18, 2019. https://www.nytimes.com/2019/09/18/
    health/abortion-rate-dropped.html. Accessed March 11, 2020.
    ---------------------------------------------------------------------------
        However, there remain significant and unacceptable inequities in
    health outcomes that are the result of longstanding systems of
    oppression that deeply impact traditionally marginalized communities,
    including persons of color, those with low-incomes, those who identify
    as LGBTQ, and those who live at the intersection of structural racism,
    inequality, sexism, classism, xenophobia, and other systemic barriers
    to healthcare and other resources are among those most severely
    impacted. The recent outbreak of the novel coronavirus and subsequent
    COVID-19 pandemic is underscoring the inequities in access to
    healthcare worldwide and is very likely to further exacerbate the
    financial barriers to seeking care that is needed, including sexual and
    reproductive health services.
        On behalf of Planned Parenthood Federation of America (PPFA), I
    respectfully request that while assembling legislation to provide
    appropriations for fiscal year 2021 that you protect critical domestic
    health and family planning programs while also increasing funding for
    key programmatic priorities, including by:
    1. Protecting and increasing funding for Title X--America's Family
            Planning Program
        Prior to 2019, the Title X program served more than four million
    low-income individuals annually at nearly 4,000 health centers located
    in every state plus the District of Columbia.\3\ The program provided
    those with low-income with access to affordable basic primary and
    preventive healthcare and family planning services, including
    contraception services and counseling, cancer screenings, and STI
    testing and treatment. Title X had a proven track record as being
    highly effective, for example helping to prevent nearly one million
    unintended pregnancies each year.\4\
    ---------------------------------------------------------------------------
        \3\ Fowler, C. I., Gable, J., Wang, J., & Lasater, B. (2017,
    August). Family Planning Annual Report: 2016 national summary. Research
    Triangle Park, NC: RTI International.
        \4\ Frost JJ et al., Contraceptive Needs and Services, 2014 Update,
    New York: Guttmacher Institute, 2016, https://www.guttmacher.org/
    report/contraceptive-needs-and-services-2014-update.
    ---------------------------------------------------------------------------
        Over the objection of more than 110 public health and medical
    organizations \5\ and, most importantly, the American people, the Trump
    administration proposed and is now enforcing a gag rule that makes
    significant changes to the program. The gag rule prohibits Title X
    providers from giving their patients full and accurate information,
    eliminates a longstanding requirement that Title X providers offer a
    broad range of medically-approved contraception, and imposes onerous
    and unreasonable physical and financial separation requirements for
    abortion-related activities. It also contains a whole host of
    additional provisions designed to reduce access to quality family
    planning services in communities across the country, which effectively
    dismantle the program as it has been run for nearly 50 years. Since
    enforcement began in August 2019, the Guttmacher Institute recently
    estimated that 981 clinics have since been forced out of the program
    because of the gag rule which provided Title X-funded services to 1.6
    million patients nationwide. Many states have seen drastic reductions
    in both the number of Title X provider sites and capacity to provide
    Title X services and today there are no longer Title X-funded services
    being provided in six states--Hawaii, Maine, Oregon, Utah, Vermont and
    Washington.
    ---------------------------------------------------------------------------
        \5\ Planned Parenthood Federation of America. More than 110 Family
    Planning and Public Health Organizations Urge HHS Not to Undermine
    Title X Family Planning Program Through ``Domestic Gag Rule.'' May 16,
    2018. https://www.plannedparenthood.org/about-us/newsroom/press-
    releases/more-than-110-family-planning-and-public-health-organizations-
    urge-hhs-not-to-undermine-title-x-family-planning-program-through-
    domestic-gag-rule?--ga=2.224895454.598872
    098.1553546518-807812785.1551206749 Accessed March 11, 2019
    ---------------------------------------------------------------------------
        Now that Planned Parenthood health centers have been forced out of
    the program, Title X and its underserved patients remain at risk unless
    Congress acts to ensure the gag rule is blocked and Planned Parenthood
    and other family planning providers have a pathway back into the
    program. We strongly recommend that any increase in funding be paired
    with protective language blocking the gag rule. We urge you to adopt
    protective language similar to the fiscal year 2020 House language that
    blocks implementation of the harmful gag rule and permits existing and
    former Title X networks to rebuild and begin to reverse the damage
    caused by this rule. With that language in place, we recommend you
    appropriate $400 million for the program.
    2. Providing Funding for STI and HIV Prevention at the Centers for
            Disease Control and Prevention (CDC)
        Sexually-transmitted infections (STIs) are a serious and growing
    public health problem. In 2018, an annual CDC surveillance report
    identified nearly 2.5 million cases of syphilis, chlamydia, and
    gonorrhea diagnoses in the United States.\6\ This marked the fifth
    consecutive year of increases in the rates of these STIs. Of particular
    concern were cases of congenital syphilis--syphilis passed from a
    mother to her baby during pregnancy--which increased 40 percent over
    the previous year. The overall rate has nearly tripled over the past 5
    years. Similarly, while progress has been made in recent years to
    prevent new HIV infections, new data suggest that efforts have
    plateaued at 39,000 new cases per year since 2013, driven by
    disparities in progress amongst persons of color.
    ---------------------------------------------------------------------------
        \6\ Centers for Disease Control and Prevention (CDC). 2018 STD
    Surveillance Report.
    October 8, 2019. https://www.cdc.gov/nchhstp/newsroom/2019/2018-STD-
    surveillance-report.html. Accessed March 11, 2020.
    ---------------------------------------------------------------------------
        Despite the CDC recommendation that all pregnant women be tested
    for STIs, many women and other sexually active adults are not being
    adequately tested, in part because of limited resources for screening.
    The CDC's National Center for HIV/AIDS, Hepatitis, STIs and TB
    Prevention (NCHHSTP) conducts critical public health surveillance, but
    also funds screenings and other important activities. We ask that you
    fund CDC/NCHHSTP at $1.921 billion for fiscal year 2021, including
    $240.8 million for the Division of STD Prevention.
    3. Protecting and Funding the Teen Pregnancy Prevention Program and the
            CDC's Division of Adolescent School Health, Eliminating Harmful
            and Ineffective Abstinence-Only-Until-Marriage Programs
        As the nation's leading provider of sex education, Planned
    Parenthood works in and with communities across the country to provide
    outstanding sex education programs. Our educators see daily how vital
    it is for young people to have access to sex education programs that
    give them knowledge and skills they need to lead fulfilling, safe, and
    healthy lives. However, today less than 43 percent of all high schools
    and only 18 percent of middle schools provide education on all of the
    CDC's identified topics that are critical to ensuring sexual health.
        Since fiscal year 2010, the Teen Pregnancy Prevention Program
    (TPPP) has supported projects and programs that deliver community-
    driven, evidence-based or informed, medically accurate, and age-
    appropriate approaches that incorporate involvement from parents,
    educators, and health providers. Currently, 84 organizations in 33
    states, the District of Columbia, and the Marshall Islands receive TPPP
    funding. The positive outcomes of the program have been well-
    documented. In September 2017, the bipartisan Commission on Evidence-
    Based Policymaking, established by then-House Speaker Paul Ryan and
    Senator Patty Murray, highlighted TPPP as an model example of a Federal
    program that has developed evidence in support of good policy.
        Despite this progress, the Trump-Pence administration proposes to
    eliminate the program and has diluted its impact by awarding funding to
    organizations and programs using abstinence-only-until-marriage (AOUM),
    or so-called ``sexual risk avoidance'' frameworks. This is despite an
    overwhelming body of evidence that has found that AOUM programs not
    only fail to deliver results, but are ineffective at their primary goal
    of young people delaying sex until marriage.
        Planned Parenthood urges you to continue to provide $101 million
    for TPPP, in addition to $6.8 million for dedicated evaluation transfer
    authority. We also request additional bill and report language that
    protects the integrity of the program, which has been subject to
    unlawful attacks by the administration. Furthermore, urge you to
    eliminate funding for the abstinence-only-until-marriage ``sexual risk
    avoidance'' competitive grant program.
        The CDC's Division of Adolescent and School Health (DASH) provides
    funding to local education agencies across the country to implement
    school-based programs and practices designed to prevent HIV and other
    STIs among young people, and also integrates approaches aimed at
    substance use and violence prevention. In addition, the program expands
    the research and evidence base of how to best meet the respective needs
    of young people, including LGBTQ youth and other adolescents.
    Currently, DASH provides funding to 28 school districts across the
    country. Providing a significant increase ($67 million over the fiscal
    year 2020 enacted level) to DASH funding would considerably expand the
    number served through this important program. We ask that you provide
    CDC/DASH with $100 million in fiscal year 2021.
    4. Eliminating Harmful and Discriminatory Legacy Riders That Undermine
            Access to Abortion and Rejecting Any New Anti-Women's Health
            Provisions
        Opponents of sexual and reproductive health and rights have long
    used the appropriations process to undermine women's access to
    comprehensive reproductive care, including access to abortion. Through
    policy riders in bills under the jurisdiction of multiple
    subcommittees, including the original Hyde amendment in the Labor/HHS
    bill, opponents have limited access for women on Medicaid. When elected
    officials deny certain categories of women insurance coverage for
    abortion, they either are forced to carry the pregnancy to term or pay
    for care out of their own pockets. The result is unfair and
    discriminatory policy that further exacerbates poor public health
    outcomes for those who already face significant barriers to care. We
    urge the Committee to eliminate all such coverage bans on women's
    access to abortion. In addition, the Committee should reject the
    multiple harmful new policy riders we have seen proposed in years past
    that would roll back progress for women, including proposals to
    ``defund'' Planned Parenthood.
                                    ********
        We welcome the opportunity to discuss these requests with you or
    your staff. If you have questions about any of the above requests,
    please don't hesitate to contact me jacqueline.ayers@ppfa.org). For
    more information about domestic priorities, please contact Jack
    Rayburn, Director, Legislative Affairs (jack.rayburn@ppfa.org).
        Sincerely.

        [This statement was submitted by Jacqueline Ayers, Vice President,
    Government Relations and Public Policy, Planned Parenthood Federation
    of America.]
                                     ______

      Prepared Statement of the Population Association of America and the
                       Association of Population Centers
        Thank you, Chairman Blunt and Ranking Member Murray for this
    opportunity to express support for the National Institutes of Health
    (NIH), National Center for Health Statistics (NCHS), Institute of
    Education Sciences (IES), and Bureau of Labor Statistics (BLS). These
    agencies are important to the members of the Population Association of
    America (PAA) and Association of Population Centers (APC) because they
    provide direct and indirect support to population scientists and the
    field of population, or demographic, research overall. In fiscal year
    2021, we urge the Subcommittee to adopt the following funding
    recommendations: $44.7 billion, NIH; $189 million, NCHS; $670 million,
    IES; and $658.3 million, BLS. Given the uncertainty of the ongoing
    COVID-19 pandemic, PAA and APC also urge the subcommittee to consider
    opportunities to provide necessary, additional funding for these
    agencies in fiscal year 2021.
                         national institutes of health
        Demography is the study of populations and how or why they change.
    The health of our population is fundamentally intertwined with the
    demography of our population. Recognizing the connection between health
    and demography, NIH supports population research programs primarily
    through the National Institute on Aging (NIA) and the National
    Institute of Child Health and Human Development (NICHD). PAA and APC
    thank Chairman Blunt and Ranking Member Murray for their bipartisan
    leadership and for working together in recent years to provide the NIH
    with robust, sustained funding increases. As members of the Ad Hoc
    Group for Medical Research, PAA and APC recommend the Subcommittee
    continue to prioritize NIH funding by endorsing an appropriation of at
    least $44.7 billion for the NIH, a $3 billion increase over the NIH's
    program level funding in fiscal year 2020. We urge that NIA and NICHD,
    as components of the NIH, receive commensurate funding increases in
    fiscal year 2021.
                          national institute on aging
        The NIA Division of Behavioral and Social Research (BSR) is the
    primary source of Federal support for basic population aging research.
    In January 2020, the NIA National Advisory Council on Aging (NACA)
    released a comprehensive review of the BSR Division The report
    reinforced the value of the Institute's investment in an array of
    population aging research activities, including large-scale,
    longitudinal studies, such as the Health and Retirement Study, and
    center programs, such as the Centers on the Demography and Economics of
    Aging, which are conducting research on the demographic, economic,
    social, and health consequences of U.S. and global aging at 11
    universities nationwide. With additional funding in fiscal year 2021,
    the BSR Division could continue to support these activities as well as
    pursue recommendations that the NACA review identified, including
    expanding research opportunities to advance our understanding of the
    poor overall health of older people in America and the growing
    disparities in some parts of the country.
      eunice kennedy shriver national institute on child health and human
                                  development
        Since the Institute's inception in 1962, NICHD has had a clear
    mandate to support a robust research portfolio focusing on maternal and
    child health, the social determinants of health, and human development
    across the lifespan. The NICHD Population Dynamics Branch meets this
    mandate by supporting innovative and influential population science
    initiatives, including: (1) large-scale longitudinal surveys, with
    population representative samples, such as the National Longitudinal
    Survey of Adolescent Health and Fragile Families and Child Well Being
    Study; (2) a nationwide network of population science research and
    training centers; and, (3) numerous scientific research initiatives
    that have advanced our understanding of specific diseases and
    conditions, including obesity, autism, and maternal mortality, and,
    further, how socioeconomic and biological factors jointly determine
    human health. With additional support in fiscal year 2021, the
    Institute could continue supporting its large-scale data collection
    activities and its Population Dynamics Centers Research Infrastructure
    Program. Finally, with additional support to NIH overall, NICHD could
    help achieve the goals of the agency's proposed research initiative to
    reduce maternal mortality.
                     national center for health statistics
        NCHS is the nation's principal health statistics agency, providing
    data on the health of the U.S. population. Population scientists rely
    on large NCHS-supported health surveys, especially the National Health
    Interview Survey and National Health and Nutrition Examination Survey,
    to study demographic, socioeconomic, and behavioral differences in
    health and mortality outcomes. They also rely on the vital statistics
    data that NCHS releases to track trends in fertility, mortality, and
    disability. NCHS health data are an essential part of the nation's
    statistical and public health infrastructure. In order to support
    NCHS's continued work to monitor the health of the American people and
    to allow the agency to make much-needed investments in the next
    generation of its surveys and products, PAA, as a member of the Friends
    of NCHS, recommends NCHS receive at $189 million in fiscal year 2021.
    Our recommendation reflects an increase to NCHS's base budget of $14.6
    million from its fiscal year 2020 appropriation, as well as the
    formalization of an ongoing $14 million transfer from Surveillance,
    Epidemiology, and Informatics as proposed in the President's fiscal
    year 2021 Budget Request. We urge the Subcommittee to reject the
    Administration's proposed $5.4 million cut to the agency, which would
    have a devastating impact on NCHS's ability to continue to provide
    timely, unbiased, and accurate data on Americans' health and could
    result in the elimination of one of its primary health surveys.
                           bureau of labor statistics
        Population scientists who study and evaluate labor and related
    economic policies use BLS data extensively. The field also relies on
    unique BLS-supported surveys, such as the American Time Use Survey and
    National Longitudinal Surveys, to understand how work, unemployment,
    and retirement influence health and well-being outcomes across the
    lifespan. As members of the Friends of Labor Statistics, PAA and APC
    are very grateful for $40 million programmatic increase that BLS
    received in fiscal year 2020. It was the first meaningful increase that
    the agency had received since 2009. We are also pleased that BLS
    received $10 million in fiscal year 2020 to plan for a new youth cohort
    for the National Longitudinal Survey of Youth (NLSY). As the
    Subcommittee knows, the current NLSY 1979 and 1997 cohorts cannot
    provide adequate information about teens and young adults entering the
    labor market. PAA and APC hope that this planning process will provoke
    a new, necessary NLSY cohort in fiscal year 2021. We urge the
    Subcommittee to continue sustained support for the agency in fiscal
    year 2021 by supporting the Administration's request, $658.3 million,
    in fiscal year 2021.
                        institute of education sciences
        PAA relies on the Institute of Education Sciences (IES),
    particularly the National Center for Education Statistics (NCES) within
    IES, for objective information on the condition of education in the
    United States, including topics ranging from K-12 to post-secondary
    education, teacher development, and school violence. PAA joins other
    social science organizations in expressing concerns about inadequate
    staffing at NCES and its adverse effect on the agency's ability to
    manage its broad array of surveys and assure data quality and program
    rigor. We urge the Subcommittee to exert careful oversight of this
    situation and consider whether legislative language could be adopted in
    the fiscal year 2021 bill to address it. Further, as members of the
    Friends of IES, we ask that agency receive $670 million in fiscal year
    2021.
        Thank you for considering our support for these agencies as the
    Subcommittee drafts the fiscal year 2021 Labor, Health and Human
    Services and Education Appropriations bill.

        [This statement was submitted by Mary Jo Hoeksema, Director,
    Government and Public Affairs, Population Association of America and
    the Association of Population Centers.]
                                     ______

                     Prepared Statement of Power to Decide
        Dear Chairwoman Lowey, Ranking Member Granger, Chairwoman DeLauro
    and Ranking Member Cole:
        Power to Decide respectfully requests the following funding levels
    within the fiscal year 2021 Labor, Health and Human Services,
    Education, and Related Agencies (LHHS) appropriations bill, as well as
    language protecting and restoring the integrity of key programs. Power
    to Decide is a non-profit, non-partisan organization that works to
    ensure that all young people-no matter who they are, where they live,
    or what their economic status might be-have the power to decide if,
    when, and under what circumstances to get pregnant and have a child. We
    do this by increasing information, access, and opportunity.
    Specifically, we request:
      --$400 million for the Title X Family Planning Program accompanied by
            language that blocks the domestic gag rule and begins to undo
            its damage by allowing those entities that left the program a
            way to rejoin it.
      --$101 million for the Teen Pregnancy Prevention (TPP) Program
            accompanied by language that ensures the program adheres to
            rigorous standards of evidence and avoids biased or incomplete
            information.
      --$6.8 million under the Public Health Services Act for the
            evaluation of teenage pregnancy prevention approaches,
            including sufficient funding to support the Teen Pregnancy
            Prevention Evidence Review administered by the Assistant
            Secretary for Planning and Evaluation (ASPE).
                        title x family planning program
        We request $400 million in funding for the Title X program for
    fiscal year 2021. For five decades, Title X has played a critical role
    in preventing unplanned pregnancy by offering low-income and uninsured
    individuals' access to high-quality contraceptive services, preventive
    screenings, and health education and information. Title X patients are
    some of the most marginalized in the country. Two-thirds have incomes
    at or below the Federal poverty level and forty percent are
    uninsured.\1\ The services Title X supports save taxpayers $7 for every
    $1 invested.\2\ Despite the significant return on investment, the
    current $286.5 million funding level in fiscal year 2020 is $31 million
    lower than the fiscal year 2010 level, which was already inadequate to
    meet the need. Even prior to the devastating implementation of the
    domestic gag rule, reduced funding over the last several years has
    resulted in fewer patients served and more clinic closings. For
    example, in 2018, Title X clinics served nearly 4 million women and
    men, down 25 percent or 1.3 million patients from the 5.2 million
    patients served in 2010. The current funding level is already
    insufficient to meet the needs of those depending on Title X clinics,
    but the implementation of the domestic gag rule has made things
    dramatically worse. In addition to increased funding, we request
    language that blocks the domestic gag rule and that provides a pathway
    for entities forced out of the Title X program to rejoin. Nationwide,
    more than 19 million women in need of publicly funded family planning
    (with incomes at or below 250 percent of the Federal Poverty Level)
    live in contraceptive deserts, where they lack reasonable access to a
    clinic offering the full range of contraceptive methods.\3\ The
    upheaval caused by the gag rule is only exacerbating these access gaps.
    The gag rule has forced clinics to make an impossible choice--reject
    funds that support their patients who might not otherwise be able to
    afford family planning care or withhold information from patients about
    abortion services. To date, 15 states have lost some or all of their
    Title X funding, and an additional 15 states have lost funding to
    individual clinics that are not replaceable in those communities
    leading to more than 900 clinics losing Title X funding. Nationwide,
    8.8 million women in need of publicly funded contraception across 390
    counties have lost Title X resources in their communities.\4\ And it is
    not only those who receive services directly paid for by Title X who
    are losing access to birth control. Title X funds are critical to
    keeping clinic doors open for thousands of clinics that also serve
    patients who have insurance, such as Medicaid and Affordable Care Act
    plans. Insufficient funding and forcing high quality providers out of
    Title X both exacerbate disparities in access to family planning care,
    falling hardest on people of color, people living in rural areas, and
    people struggling to make ends meet. We urge you to help change this by
    funding Title X at $400 million, blocking the domestic gag rule, and
    beginning to reverse the damage done.
    ---------------------------------------------------------------------------
        \1\ Fowler, C. I., Gable, J., Wang, J., Lasater, B., & Wilson, E.
    (2019, August). Family Planning Annual Report: 2018 national summary.
    Research Triangle Park, NC: RTI International.
        \2\ Frost J.J., Sonfield A., Zolna M.R., & Finer L.B. (2014).
    Return on investment: A fuller assessment of the benefits and cost
    savings of the US publicly funded family planning program. Milbank
    Quarterly, 92(4): 667-720.
        \3\ Power to Decide (February 2020). Contraceptive Deserts
    Research, Retrieved on February 19, 2020 from https://
    powertodecide.org/what-we-do/access/birth-control-access.
        \4\ Power to Decide (November 2019). Impacts of the Domestic Gag
    Rule, Retrieved on February 19, 2020 from https://powertodecide.org/
    what-we-do/information/resource-library/impacts-domestic-gag-rule.
    ---------------------------------------------------------------------------
                    teen pregnancy prevention (tpp) program
        We request funding for the TPP Program at $101 million for fiscal
    year 2021, the same as its current fiscal year 2020 funding level. We
    also request that language be included that protects the program from
    ongoing Administration efforts to subvert congressional intent.
    Specifically, we request language that ensures the program adheres to
    rigorous standards of evidence, avoids biased or incomplete
    information, and provides accountability for the funding appropriated
    by Congress.
        The first two five-year cycles of grants have already made vital
    contributions to the growing body of knowledge of what works for whom
    and under what circumstance to prevent teen pregnancy. This has
    included high quality implementation, rigorous evaluation (primarily
    randomized control trials), innovation, and learning from results. The
    September 2017 unanimously-agreed-to-report from the bipartisan
    Commission on Evidence-Based Policymaking established by House Speaker
    Paul Ryan and Senator Patty Murray highlighted the TPP Program as an
    example of a Federal program developing increasingly rigorous
    portfolios of evidence.\5\ Yet since 2017 the U.S. Department of Health
    and Human Services (HHS) has repeatedly sought to eliminate or
    undermine the TPP Program. This includes shortening the second cohort
    of five-year grants (fiscal year 2015--fiscal year 2019) to only 3
    years, until grantees prevailed in 11 lawsuits filed against the grant
    shortening. Despite numerous and repeated inquiries from Congress,
    attempts to remake the program continue, including a move away from
    implementation of evidence-based interventions and rigorous evaluation.
    We strongly urge appropriators to include language for fiscal year 2021
    appropriations that both fully funds the TPP Program and includes
    language that protects the program from ongoing efforts to subvert
    congressional intent.
    ---------------------------------------------------------------------------
        \5\ Nick Hart and Meron Yohannes (eds.) Evidence Works: Cases Where
    Evidence Meaningfully Informed Policy. (Washington, D.C.: Bipartisan
    Policy Center, 2019). Retrieved on February 19, 2020 from https://
    bipartisanpolicy.org/wp-content/uploads/2019/06/Evidence-Works-Cases-
    Where-Evidence-Meaningfully-Informed-Policy.pdf.
    ---------------------------------------------------------------------------
             evaluation of teenage pregnancy prevention approaches
        As part of the growing bipartisan commitment to evidence-based
    policymaking, there's a recognition of supporting high quality
    evaluation within Federal agencies. Congress has historically provided
    a modest amount of dedicated funding to evaluate teen pregnancy
    prevention approaches, including longitudinal evaluations. This
    funding, in conjunction with the TPP Program, has contributed to
    deepening our knowledge of what works to reduce teen pregnancy.
    However, HHS has not in recent years used this funding for high quality
    evaluations. That should be corrected in fiscal year 2021.
    Appropriators should also specifically include sufficient funding to
    continue the Teen Pregnancy Prevention Evidence Review administered by
    ASPE, as they did through report language for fiscal year 2020. This is
    an objective, systematic review using high quality evidence standards.
    Such evidence reviews are recognized as a hallmark of evidence-based
    policymaking and are an essential tool to compile and share a growing
    body of evidence.
                              additional programs
        In addition to funding for the aforementioned programs, we urge you
    to provide adequate funding levels for other important programs that
    contribute to improved reproductive well-being as part of broader
    efforts. These programs include the Maternal and Child Health Block
    Grant, the Centers for Disease Control and Prevention, and Community
    Health Centers.
        The TPP Program and the Title X Family Planning Program enjoy broad
    bipartisan support.
        In conclusion, 85 percent of adults support continued funding for
    the TPP Program, and 75 percent favor continuing the Title X program.
    These programs make sense. Helping to ensure that everyone has the
    power to decide if, when, and under what circumstances to get pregnant
    and have a child will improve opportunities for them and for the
    country. We appreciate the budget constraints appropriators face and
    respectfully urge you to support this request. If you have questions or
    need additional information, please contact Rachel Fey, Senior Director
    of Public Policy at rfey@powertodecide.org.
                                     ______

                    Prepared Statement of Prevent Blindness
        As the nation's leading nonprofit, voluntary organization committed
    to preventing blindness and preserving sight, Prevent Blindness
    appreciates the opportunity to submit testimony to the Subcommittee. We
    are pleased that the year 2020 represents a unique opportunity to draw
    attention to vision and eye health. As such, we respectfully request
    the following allocations in fiscal year 2021 to the Department of
    Health and Human Services Centers for Disease Control and Prevention
    (CDC), National Center for Chronic Disease Prevention and Health
    Promotion, to promote eye health and prevent eye disease and vision
    loss:
      --$5,000,000 for the CDC's Vision and Eye Health program to update
            national prevalence estimates on vision impairment and eye
            disease using the National Health Nutrition Examination Survey
            (NHANES) and improve state and community-level interventions to
            help prevent avoidable vision loss; and
      --$4,000,000 to allow the CDC's Glaucoma program to continue to
            improve glaucoma screening, referral, and treatment by reaching
            populations that experience the greatest disparity in access to
            glaucoma care.
                       vision and eye health and covid-19
        As our nation continues to respond to the current novel coronavirus
    pandemic, there is an increasing understanding of the need for
    sustained investments in public health surveillance to stay ahead of
    major disease outbreaks or crises. As we start to understand the long-
    term impacts of COVID-19, we are concerned our national vision and eye
    health problem will only become worse if patients cannot access eye
    care treatments due to a loss or lack of comprehensive healthcare
    coverage or if patients do not feel safe to seek treatment.
        Additionally, as the majority of the United States is working from
    home or learning in a virtual environment, Americans face increased
    demands on their vision and eye health from prolonged, close exposure
    to electronic devices such as smart phones, laptop computers, and
    tablets. Additional research is needed to understand the long-term
    impacts that these devices may have on our eyes-such as increasing
    rates of myopia, dry eye, and eye strain-particularly as we may need to
    extend these virtual work and learning circumstances into the fall and
    winter.
        We are still learning about this serious disease; however, we do
    know there is an intersection between those at high risk for
    complications of COVID-19 and those who live with eye disease or vision
    loss-including the elderly and people with underlying conditions like
    diabetes. Until we have assurance that a safe and affordable
    vaccination for COVID-19 is readily available and can safeguard our
    personal and public health, our only available proactive response to
    this disease is preparation.
        With updated data that illustrates who currently lives with vision
    loss and eye disease, and who is most at risk for potentially blinding
    conditions, we can develop strategies to ensure that patients can
    safely seek eye care treatment without potentially exposing themselves,
    their loved ones, their caregivers, and front-line providers to this
    disease. We can ensure patients understand how to manage their eye care
    treatment should social distancing guidelines continue in the future.
    We can work with state and community leaders to develop cross-sector,
    multilevel collaborations and interventions on vision and eye health
    that ensure individuals living with vision loss can continue to safely
    function in their own communities while taking necessary precautions.
    We can also address the consequences of vision loss that overlap with
    COVID-19, including social isolation, inability to self-care and manage
    disease, improve telehealth and accessibility, improve access to COVID-
    19 services including screening, testing, and treatment, and ensure
    access to support services necessary for those with disability for
    which social distancing requirements effectively cuts off critical
    transportation.
        Ultimately, we can develop guidelines based on evidence,
    experience, and foresight to ensure that patients do not have to make
    the choice between interruptions in their care (which, in some cases,
    could lead to irreversible vision loss) or exposing themselves and
    others to the serious risks of COVID-19.
                   our national vision and eye health problem
        Vision and eye health enables many aspects of daily living no
    matter your age, racial and ethnic background, or socio-economic
    circumstances. With healthy vision, we can engage with the world around
    us, learn in school, earn a living, and age independently with a high
    quality of life. Public opinion polls conducted over the last 40 years
    indicate that Americans consistently fear losing their vision second
    only to fear of cancer. Yet, vision and eye health is often an
    afterthought until changes to eyesight become noticeable and lost
    vision is gone forever. Vision impairments and eye disease are chronic
    conditions: they require ongoing treatment and management over the
    course of one's lifetime. According to the Robert Wood Johnson
    Foundation, eye disorders are the fifth leading chronic condition among
    those aged 65 years and older and seventh across all age groups.\1\
    Recent estimates from the CDC indicate that, in 2017, 93 million
    Americans over the age of 18 (roughly 4 in 10) are at high risk for
    vision loss. Of this population, 37.2 million (40 percent) did not see
    an eye doctor or receive an eye exam in the last year. The CDC also
    found that 8 million adults (roughly 1 in 11) needed eyeglasses but
    could not afford them.\2\ The reality is that 75 percent of vision loss
    is preventable with early detection and treatment; yet, patients
    continue to face significant barriers such as costs of treatment,
    coverage, lack of awareness of the importance of prevention, and gaps
    in the healthcare system. The programs we are here to discuss today are
    a critical first step in addressing these very preventable problems.
    ---------------------------------------------------------------------------
        \1\ 1 ``Chronic Care: Making the Case for Ongoing Care'' Robert
    Woods Johnson Foundation, 2010. https://www.rwjf.org/content/dam/farm/
    reports/reports/2010/rwjf54583.
        \2\ Four in 10 US Adults Are At High Risk for Vision Loss, CDC
    Vision Health Initiative, March 2020. https://www.cdc.gov/visionhealth/
    resources/publications/high-risk-vision-loss.html.
    ---------------------------------------------------------------------------
                    the costs of vision loss and eye disease
        Vision problems are also incredibly costly, not just to the
    individual but to our national healthcare system. Accounting for
    private and public payments for medical care, long-term care, patients'
    out-of-pocket costs, direct and indirect costs, lost productivity and
    consequential lost tax revenue, our national costs on vision and eye
    health amounted to $167 billion in 2019. According to national
    forecasts, total expenditures on vision problems, due to an aging
    population and changes in demographics, will reach $385 billion by 2032
    and $717 billion by 2050. With this, the proportion of these costs paid
    by government programs will increase from 32.6 percent to 41.14 percent
    by 2050.
        Vision impairment and eye disease often contributes to several
    costly and chronic conditions, including: diabetes, injuries and death
    related to falling, stroke, depression and social isolation, cognitive
    decline, lack of mobility, and need for long-term care. Barriers in
    access to care resulting from high costs, lack of transportation,
    inability to prioritize eye care with other conditions, and poor health
    outcomes exacerbate vision problems. Patients with vision loss
    experienced longer hospital stays and high readmission rates, resulting
    in $500 million in excess costs.\3\ With an aging population and a
    working adult population who faces a rise in chronic diseases that
    affect their vision and ability to maintain their own economic
    independence through sustained employment, now is the time to invest in
    our collective eye health.
    ---------------------------------------------------------------------------
        \3\ Morse AR, et al. JAMA Ophthalmology. 2019;doi:10.1001/
    jamaophthalmol.2019.0446. Accessed 20/01/23 from: https://
    www.ncbi.nlm.nih.gov/pubmed/30946451.
    ---------------------------------------------------------------------------
           vision and eye health at the cdc: saving sight and dollars
        The CDC addresses our national vision impairment and eye disease
    burden by conducting public health surveillance, research, and
    evidence-based public health interventions designed to complement state
    and community health efforts. From 1999--2008, NHANES included visual
    examinations and from 2005--2008, it included ophthalmology
    examinations to measure rates of eye disease that led to vision loss.
    However, the 2005--2008 data set is the last collection of reliable
    prevalence estimates of vision impairment and eye disease \4\ due to a
    consistent lack of resources allocated to the CDC's vision and eye
    health programs from fiscal year 2011 through fiscal year 2020. This
    means that our best available data on our national vision loss and eye
    disease burden is over a decade old with current state and community
    interventions based on 12-15 year-old data. Without updated and
    reliable data, we cannot begin to solve our burgeoning vision and eye
    health crisis.
    ---------------------------------------------------------------------------
        \4\ Vision Health Initiative, CDC. National Health and Nutrition
    Examination Survey https://www.cdc.gov/visionhealth/vehss/data/
    national-surveys/national-health-and-nutrition-examination-survey.html.
    ---------------------------------------------------------------------------
        With $5 million appropriated to vision and eye health in fiscal
    year 2021, the CDC can:
      --Resume use of the NHANES to collect data on prevalence of diabetic
            retinopathy, glaucoma, and vision loss,
      --Determine rates of vision and eye examinations, measure rates of
            visual acuity, screening tests, and visual functioning
            assessment to determine gaps in access and patient education,
            and
      --Use this information to bolster state capacity to respond to the
            needs of their communities with collaborative interventions and
            targeted strategies to improve vision and eye health at the
            state, local, or systems level.
        We urge the Committee to direct $5 million to the CDC's Vision and
    Eye Health program to resume use of this gold standard surveillance
    instrument, and help ensure that we are doing everything we can to
    protect Americans' eye health and sight.
                              glaucoma at the cdc
        As well, we ask the Committee to maintain the CDC's work in
    improving glaucoma screening, referral, and treatment particularly for
    populations that face disparity in access to glaucoma care. The CDC
    conducts glaucoma detection programs designed to reach populations that
    are at highest risk for getting glaucoma. Two particular programs have
    proven essential in providing direct glaucoma detection, referral, and
    sustained eye care services through innovative service models that can
    be spread to other areas with high-risk populations.\1\
        University of Alabama (UAB) EQUALITY (Eye care Quality and
    Accessibility Improvement in the Community): The UAB coordinated with
    local optometrists to provide comprehensive eye exams and send high-
    resolution retinal images to glaucoma specialists at the Department of
    Ophthalmology for review, diagnosis, and a developed treatment plan.
    Educational components included brochures, short consumer-oriented
    videos, and posters placed in the vision centers. This program
    successfully reached 651 participants with optometrists making 750
    diagnoses by eye and 19 percent new detected cases of glaucoma. 88
    percent of program participants were older than 40 years and 64 percent
    were African-American.
        Willis Eye Hospital: Willis Eye Hospital transported eye care
    equipment to community sites (such as senior centers, residential
    housing for seniors, faith-based organizations, health fairs, and
    public health clinics) where a team of 4-7 technicians and a glaucoma
    specialist provided free eye examinations and laser treatment. Services
    were provided in 43 communities in Philadelphia with 1,649 people were
    screened for glaucoma and 1,709 glaucoma diagnoses were made by eye.
    This outreach also resulted in diagnosis of eye-related diseases in
    1,462 eyes (1,140 of which were cataracts).
        By maintaining the CDC's funding at $4 million in fiscal year 2021,
    Congress will ensure that this essential work will continue for
    Americans who need essential glaucoma care.
                                   conclusion
        Earlier this year, over 83 organizations including Prevent
    Blindness sent a letter to this Committee with our collective
    endorsement of these critical investments to the CDC's vision and eye
    health programs. There is strong consensus among providers,
    researchers, public health practitioners, community organizations, and
    consumer and patient groups in the vision and eye health community that
    these investments are important for safeguarding our ability to see
    clearly, learn in school, engage with our communities, earn a
    productive living, and maintain our independence through the aging
    process.
        On behalf of Prevent Blindness, our Board of Directors, and the
    millions of people whom we represent at risk for vision loss and eye
    disease, we stand ready to work with the Subcommittee and other Members
    of Congress to advance these and other policies that will prevent
    blindness and preserve sight.

        [This statement was submitted by Jeff Todd, President & CEO,
    Prevent
    Blindness.]
                                     ______

                  Prepared Statement of the Pueblo de Cochiti
        I write this testimony on behalf of the community members of the
    Pueblo de Cochiti. The Pueblo is located in north central New Mexico
    and a small Pueblo, rural in nature and an on-reservation population of
    less than 1000 members. The Indian Health Service provides a 2-day
    clinic per week in our reservation clinic. The Community Health
    Representatives (CHRs) are the 'Boots on the Ground' tribal health
    providers when no other health services are available in our Pueblo.
    The small staff is our medical providers after Indian Health Service
    staff leave. They provide prevention, intervention and direct services
    such as home visits, health education, EMS, partner with local, state
    and Federal health partners. They keep me informed of all health
    matters related to our community and serve as liaison with all health
    providers. The funding for this valuable community-based health program
    is funded from the Indian Health Service under the appropriations cited
    above. The elimination of such a service will leave Cochiti Pueblo with
    minimal health providers in our rural community. We encourage your
    support of the overall IHS budget and 2-3 percent yearly increases
    since 2008, however, we realize there is still a huge need for public
    health infrastructure in Native lands like the CHRs.
        The current Coronavirus pandemic has deployed our CHRs in our
    Pueblo. The CHRs along with a Public Health Nurse have made home visits
    to each household on educating, communicating and referral contacts on
    Coronavirus. The tribal leadership has been informed in our native
    language on the Coronavirus public health concerns and possible actions
    necessary. At times of confusing information, we need our own tribal
    health staff to assure trust and plan of action necessary specific to
    our population. On Friday March 13, 2020 I put in place a Public Health
    Emergency on the Coronavirus-19 where the CHR's are working with the
    different tribal programs to get correct information to the community.
    This will be set in place for 30 days expiring
        The President's budget request also proposes to combine funding for
    CHR ($ 62.8 million in fiscal year 2020), Health Education ($20.56
    million in fiscal year 2020) and nationalization of the Community
    Health Aide Program ($5 million in 2020) into a new 'Community Health'
    line item funded at $44.1 million. By combining all three-line items to
    one would reduce the yearly funding by $44 million for all three
    combined. All three-line items should remain as stated in the Indian
    Health Care Improvement Act which authorizes the IHS budget and has
    been institutionalized as line items. All 3-line items should be
    increased as has been recommended by the Tribal Leaders IHS budget
    formulation workgroup for the past few years. The workgroup put the CHR
    program as priority in Native lands and the IHS budget should be funded
    $9.1 billion. As demonstrated by the Coronavirus pandemic, the public
    health infrastructure and services in our Pueblo communities need to be
    staff and developed with additional CHR and public health funding. In
    rural reservations, the CHRs and Community Health providers are the
    first to respond in public health practice and protocol. You are now
    seeing the confusion and misunderstandings of public health practices
    as this will continue to occur if such programs are not funded
    adequately.
        Congress has a constitutional obligation to mandatory fund the
    Indian Health Service budget and not remain as discretionary funding.
    There is nothing discretionary about healthcare when lives are at
    stake. The Pueblo de Cochiti has submitted testimonies on funding
    healthcare in Native communities. As such, the Pueblo supports an
    indefinite appropriation and separate line item for the section 105(l)
    facility leases. This has forced IHS to take from services program
    accounts to pay for these leases. This also forces the budget to take
    from CHR, Health Ed and other line items from direct service tribes to
    pay other contracting/compacting tribes on leases at the expense of
    locally controlled public health services.
        Although, not in the IHS budget, the Pueblo urge your immediate
    support of a five-year reauthorization of the Special Diabetes Program
    for Indians (SDPI). We have over 60 diabetics in our small community.
    The SDPI funding has had a major impact in keeping our diabetic numbers
    from increasing. SDPI has saved a lot of Medicaid and Medicare funding
    but more importantly bought awareness and lifestyle changes to our
    healthy residents.
        We appreciate your continued support for Advance Appropriations to
    keep our healthcare facilities and programs open during government
    shutdowns. The IHS funded programs are direct service providers similar
    to the VA and should be funded with no regard to political
    grandstanding. My testimony highlights our Public Law 93-638 programs
    contracted by the Pueblo as we can we provide culturally sensitive
    services, but it also supports our tribal administration in
    administering these programs. Thank you very much for your efforts in
    protecting and promoting Native American healthcare.
        Respectfully.

        [This statement was submitted by Charles D. Naranjo, Governor,
    Pueblo de Cochiti.]
                                     ______

      Prepared Statement of the Puerto Rico Federal Affairs Administration
        Dear Chairman Blunt and Ranking Member Murray:
        Thank you for your essential support of Puerto Rico in the fiscal
    year 2020 appropriations process. The Committee's support of the island
    is invaluable as we continue our efforts to rebuild following the
    devastation of Hurricanes Irma and Maria in September 2017, as well as
    the earthquakes that impacted the southwest part of the island earlier
    this year. With the support of Congress, we have made great progress,
    but as you are aware, much remains to be done in order to rebuild
    Puerto Rico and set the island on a path to full recovery and
    reconstruction. With the shared goal of continuing the recovery and
    prosperity of Puerto Rico, I, on behalf of Governor Wanda Vazquez
    Garced, respectfully submit the following proposals for fiscal year
    2021 Labor, Health and Human Services, Education, and Related Agencies
    appropriations.
    Funding of Puerto Rico's Medicaid Program:
        The Government of Puerto Rico urges the Subcommittee to continue to
    adequately fund Puerto Rico's Medicaid program by appropriating two
    additional fiscal years of increased statutory cap funding at $3
    billion respectively for fiscal year 2022 and fiscal year 2023, and
    permanently establishing Puerto Rico's Federal Medical Assistance
    Percentage (FMAP) at 76 percent. As you are aware, Puerto Rico and the
    other U.S. territories are limited by statute for the FMAP at 55
    percent and are subject to a capped block-grant funding from the
    Federal Government mandated as by Section 1108(g) of the Social
    Security Act (SSA). Unlike the states and Washington DC, which have
    open ended Federal Medicaid funding, Puerto Rico has its Federal
    Medicaid funding based on the annual rate of the Consumer Price index
    for all Urban Consumers (CPI-U).
        However, following the enactment of the Further Consolidated
    Appropriations Act, 2020 (Public Law 116-94), Puerto Rico was allocated
    a temporary increase in its FMAP to 76 percent, and is eligible to
    receive up to $5.7 billion in capped funding for fiscal year 2020 and
    fiscal year 2021 combined. To retain this amount in Federal funding,
    Puerto Rico is required to meet certain program integrity benchmarks.
    If Puerto Rico fails to meet the benchmarks, the FMAP shall be reduced
    2.5 percent for every fiscal quarter but such reduction shall not
    exceed 2.5 percent.
        Puerto Rico's Department of Health (PRDOH) is working diligently to
    ensure that the integrity measures are punctual and Federal funds are
    properly spent for the Medicaid needs of the island. To ensure the
    continuity and longevity of program integrity measures and goals of the
    PRDOH, 2 years of additional funding would be required. Thus, Puerto
    Rico's Medicaid program would require an estimated $3 billion for
    fiscal year 2022 and fiscal year 2023 respectively, under a permanent
    76 percent FMAP, to ensure the continuity of efforts and measures to
    safeguard Puerto Rico's Medicaid program.
    Transition of Puerto Rico's Medicaid Program:
        The Government of Puerto Rico urges the Subcommittee to direct the
    Secretary of the U.S. Department of Health and Human Services (HHS) to
    commission a study on the health, medical, and economic benefits of
    transitioning Puerto Rico's Medicaid program from a statutorily capped
    block-grant at a 55 percent FMAP, to a state-like Medicaid program for
    Federal funding purposes. The study should focus on the impacts of
    eliminating the section 1108(g) funding cap for Puerto Rico and
    allowing Puerto Rico's FMAP percentage to be based on Puerto Rico's per
    capita income relative to that of the United States.
        Medicaid is designed to treat our nation's most vulnerable
    populations, including low-income families, the elderly, children, and
    individuals with disabilities. The U.S. citizens of Puerto Rico suffer
    from serious health conditions that require urgent care, including
    mental health issues and chronic diseases such as cancer, diabetes,
    Hepatitis C, and HIV. In the aftermath from the 2017 hurricanes and the
    recent earthquakes, serious disruptions to services at hospitals and
    other medical facilities have occurred. The exodus of providers and
    infrastructure damage is so dire that in certain circumstances, it has
    increased the risk from infectious diseases caused by unsanitary
    conditions.
        Given all the Federal and local resources invested to alleviate the
    medical hardships faced by the U.S. citizens of Puerto Rico, we should
    ensure the long-term prosperity of Puerto Rico's Medicaid program. By
    examining the health, medical, and economic benefits of transitioning
    Puerto Rico's Medicaid program to a state-like program, we will have
    the information needed to provide the best healthcare results to
    Medicaid beneficiaries on the island with Federal funding.
    Improvements to Medicare Advantage in Puerto Rico:
        The Government of Puerto Rico urges the Subcommittee to direct the
    Centers for Medicare and Medicaid Services (CMS) to make improvements
    to Medicare Advantage (MA) in Puerto Rico. MA in Puerto Rico has the
    highest participation rate in the entire nation, at an estimated 75
    percent, making MA in Puerto Rico the lowest payment rate with highest
    number of duals in a MA plan. Seniors on the island have indicated they
    appreciate MA's lower cost sharing, coordination of care, and other
    benefits that help to meet their special healthcare needs. As more than
    40 percent of citizens on the island live below the poverty line, these
    factors are integral to beneficiaries.
        To improve MA on the island, we urge the Subcommittee to direct CMS
    to maintain the zero claims adjustment to use its administrative
    authority to average geographic adjustment at .70. This would allow for
    a solution to MA funding disparities in Puerto Rico to resolve the
    persistent anomalies in the ``Fee-For-Service'' (FFS) program data. The
    FFS basis for MA rate setting is rapidly eroding in Puerto Rico and no
    longer aligns with the assumptions underlying its use for MA
    benchmarks.
        Furthermore, we ask that the Subcommittee to direct CMS to expand
    MA coverage on the island to classify Part B premium support as a core
    A/B benefit or full benefit dual-eligible individuals in Duals--Special
    Needs Plans. This would enhance the capacity of MA plans to help dual-
    eligibles under 82 percent of the Federal Poverty Level with the
    payment of the Part B member premium. Allowing MA beneficiaries on the
    island to be covered similarly to situated citizens in the states.
    Thus, these improvements to MA will enable our more than 585,000
    seniors to continue to get the necessary care they are entitled to
    receive.
    The National Survey on Drug Use and Health and the Inclusion of Puerto
            Rico:
        The Government of Puerto Rico urges the Subcommittee to fully fund
    the National Survey on Drug Use and Health (NSDUH) and require the
    inclusion of Puerto Rico in areas covered by the NSDUH. As you know,
    the NSDUH provides up-to-date information on tobacco, alcohol, drug
    use, as well as mental health related issues in the United States.
    Since its inception in 1971, the NSDUH is conducted every year in all
    50 states and in DC. However, Puerto Rico is not included in the areas
    covered by the survey and is at a data deficit when developing
    treatment and prevention plans to address the health and well-being of
    the U.S. citizens on the island.
        The collection of this data in Puerto Rico is urgently needed in
    the wake of Hurricanes Irma and Maria, as well as the recent
    earthquakes. The devastation caused by these natural disasters has
    presented historic challenges to the U.S. citizens of Puerto Rico, that
    will require a comprehensive approach to confront. Investment is not
    only needed in our infrastructure, but the mental health and well-being
    of the people of Puerto Rico. Therefore, fully funding the NSDUH and
    including Puerto Rico in the survey will allow the island to assess the
    actual substance abuse and mental health needs to adequately plan
    methods to address these issues.
    Additional Federal Funding for the Puerto Rico Mental Health and Anti-
            Addiction Services:
        The Government of Puerto Rico recommends that the Subcommittee to
    fully fund the Substance Abuse and Mental Health Services
    Administration (SAMHSA), which provides funding to Puerto Rico's Mental
    Health and Anti-Addiction Services (ASSMCA per its Spanish acronym).
    Following the 2017 hurricanes and the recent earthquakes, many of
    Puerto Rico's U.S. citizens are suffering from post-traumatic stress
    disorder (PTSD) and other mental health disorders. The goal of ASSMCA
    is to ensure high-quality, cost-effective, evidence-based, and
    integrated mental health services throughout the island. The
    development and implementation of their innovative strategies are
    further offered in an environment of respect and diversity. Thus, in
    order to meet the vital mental health services necessary to treat those
    affected by recent natural disasters in Puerto Rico, full funding of
    SAMHSA and ASSMCA is essential.
    Federal Funding for Puerto Rico's Department of Education:
        The Government of Puerto Rico asks the Subcommittee to provide
    adequate funding of $101,000,000 to Puerto Rico's Department of
    Education (PRDE) and allow for the fungibility of disaster funds from
    previous disaster supplementals to address the unmet educational needs
    throughout Puerto Rico. Following the aftermath of the 2017 hurricanes,
    several schools throughout the island remain unopened due to hurricane
    damage and lack of adequate funding. Recent earthquakes have further
    exacerbated the damage to educational facilities. The additional
    funding will allow for remedial education training and for renting of
    temporary facilities to begin courses. The fungibility of funding to
    meet the educational unmet needs will provide for the expedient use of
    already existing disaster funds to repair and alleviate the damage
    caused by the recent earthquakes. Allowing the interchangeable use of
    funds without limitation will enable the PRDE to continue its goals to
    reopen schools, provide alternative facilities, and begin courses.
    Individuals with Disabilities Education Act:
        The Government of Puerto Rico urges the Subcommittee to provide
    robust funding for the Individuals with Disabilities Education Act
    (IDEA). IDEA makes available free appropriate public education to
    eligible children with disabilities. IDEA allows students with
    disabilities such as hearing impairment, language impairment, down
    syndrome, cerebral palsy, autism, and other learning disabilities to
    receive individual-specific services, programs, and resources. In the
    aftermath of Hurricanes Irma and Maria, as well as the recent
    earthquakes, several schools lack the adequate facilities or personnel
    to meet the special education needs of students with disabilities. To
    assess and guarantee the effectiveness of efforts to educate children
    with disabilities, we must provide the proper tools to meet the
    individual needs of each student. Therefore, to ensure that educators
    and parents have the necessary tools to improve educational results for
    children with disabilities in Puerto Rico, we request robust funding of
    IDEA.
    Third Party Fiduciary Agents' Scope on Grants Awarded to the Puerto
            Rico Department of Education:
        The Government of Puerto Rico urges the Subcommittee to direct the
    Secretary of the U.S. Department of Education (ED) to commission an
    independent study to identify the scope of stipulations by third-party
    fiduciaries agent (TPFA), as well as establish specific timelines and
    conclusion of third-party oversight of Federal funds granted through ED
    to the PRDE. ED requires third-party fiduciary oversight, management,
    and administration of ED grant funds services to PRDE. PRDE's
    engagement of a TPFA is a specific condition established by ED for the
    receipt of grant funds. However, TPFAs have slowed the progress and
    recovery of schools throughout the island due to delay and uncertain
    deadlines. Following the displacements of students and teachers
    throughout the island as a result of this year's earthquakes, a
    thorough and specific scope of authority with established timelines is
    required for the expedient educational recovery of Puerto Rico.
        The island-wide devastation suffered by Puerto Rico from Hurricanes
    Irma and Maria, as well as the recent earthquakes, present historic
    challenges to the 3.2 million U.S. citizens of Puerto Rico, the
    Caribbean economy, and the United States Government. A full recovery
    for Puerto Rico requires a sustained, comprehensive approach with
    support from the Federal Government to tackle the numerous issues we
    are now facing. On behalf of Puerto Rico, I thank you for your
    continued support and leadership in Congress. I have faith that with
    your support, Puerto Rico can and will make a full recovery.
        If you require additional information or have any questions, please
    do not hesitate to contact me at jstoripan@prfaa.pr.gov.
        Sincerely.

        [This statement was submitted by Jennifer M. Storipan, Esq.,
    Executive Director, Puerto Rico Federal Affairs Administration.]
                                     ______

          Prepared Statement of the Pulmonary Hypertension Association
        Chairman Blunt, Ranking Member Murray and distinguished members of
    the Subcommittee, thank you for your time and your consideration of the
    priorities of the pulmonary hypertension (PH) community as you work to
    craft the fiscal year 2021 L-HHS Appropriations bill.
                          about pulmonary hypertension
        Pulmonary Hypertension (PH) is high blood pressure that occurs in
    the arteries of the lungs. It reflects the pressure the heart must
    apply to pump blood from the heart through the arteries of the lungs.
    As with a tangled hose, pressure builds up and backs up forcing the
    heart to work harder and less oxygen to reach the body. PH symptoms
    generally include fatigue, dizziness and shortness of breath with the
    severity of the disease correlating with its progression. If left
    undiagnosed or untreated it can lead to heart failure and death. In
    recent years, innovative treatment options have been developed and
    approved for PH. The effectiveness of current treatment options depends
    on accurate diagnosis and early intervention.
                                   about pha
        Headquartered in Silver Spring, Md., the Pulmonary Hypertension
    Association (PHA) is the country's leading PH organization. PHA's
    mission is to extend and improve the lives of those affected by PH. PHA
    achieves this by connecting and working together with the entire PH
    community of patients, families, healthcare professionals and
    researchers. The organization supports more than 200 patient support
    groups; a robust national continuing medical education program; a PH
    clinical program accreditation initiative; and a national observational
    patient registry.
                  health resources and services administration
        Due to the serious and life-threatening nature of PH, it is common
    for patients to face drastic health interventions, including heart-lung
    transplantation. To ensure HRSA can continue to make improvements in
    donor lists and donor-matching please provide HRSA with an increase in
    discretionary budget authority in fiscal year 2021.
                         national institutes of health
        Please provide NIH with meaningful increases--including at least
    $44.7 billion in program funding in fiscal year 2021--to facilitate
    expansion of the PH research portfolio so we can continue to improve
    diagnosis and treatment. NHLBI and PHA have partnered on a
    groundbreaking clinical study, the Redefining Pulmonary Hypertension
    through Pulmonary Vascular Disease Phenomics (PVDOMICS) program (RFA-
    HL-14-027 and RFA-HL-14-030). By collecting information from one
    thousand participants with various types of PH, and 500 participants
    without or at risk for PH, PVDOMICS hopes to find new similarities and
    differences between the current WHO classifications of PH, which could
    be a major step in learning about the disease and advancing patient
    care. This research is intended to lead to identification of both
    endophenotypes of lung vascular disease and biomarkers of disease that
    may be useful for early diagnosis or for assessment of interventions to
    prevent or treat PH.
                       proper health coverage and access
        The PH community is concerned that the Centers for Medicare and
    Medicaid Services (CMS) is allowing insurance payers to refuse to
    accept charitable copay and premium assistance on behalf of patients
    with complex, chronic and life-threatening conditions like PH. Because
    of breakthroughs in research, PH patients are able to utilize life-
    sustaining treatments that allow them to manage this potential fatal
    condition and lead relatively normal lives. When patients are denied
    access to financial assistance they are forced to choose between
    necessities, between dramatically shortening their lives by giving up
    medication in order to afford housing and food or continuing medication
    while starting their families on the road to bankruptcy. We aware of
    the Subcommittee's continued requests for an explanation of this
    practice targeting rare disease patients. We ask that this Subcommittee
    once again ask CMS to explain this decisions and also encourage them to
    fix this problem that is greatly affecting the rare disease community.
        PHA also asks the Subcommittee to urge CMS to increase incentives
    for the supply of oxygen that affects all oxygen modalities including
    both liquid and portable supplies. This increased flexibility will
    increase patient's quality of life at home and in their communities.
                              patient perspectives
        Lori was approved for Social Security Disability Assistance 2 years
    ago as a result of her pulmonary hypertension. For the past 2 years,
    she has been in the ``Medicare waiting period''--unable to work but not
    yet eligible for Medicare. Lori purchased coverage through her state's
    Health Insurance Marketplace during that time. Her plan fully covered
    the costs for her life-saving medication. Now Lori is finally eligible
    for Medicare, but she has been told that she will have to pay thousands
    of dollars each month for the same life-sustaining medication that was
    fully covered on her Marketplace plan. A financial grant from a non-
    profit organization may be Lori's only hope of making ends meet.
        Diane has a genetic form of pulmonary hypertension. She has a
    younger sister with PH and they lost a brother to the disease.
    Recently, a generic version of one of the therapies Diane takes to
    manage her condition became available. Diane was automatically switched
    to the alternate version by her specialty pharmacy. Within a few weeks,
    Diane went from being able to comfortably walk more than seven miles a
    day to barely being able to walk a mile. She describes her health at
    that time as ``just as bad as before I was diagnosed.'' Declines like
    the one Diane experienced are not always reversible. Fortunately,
    however, Diane appears to be regaining her normal level of functioning
    after returning to the original version of her therapy.
        Before developing pulmonary hypertension, Doug was an architect
    specializing in historic preservation. Being an architect was the only
    thing he had ever wanted to do ``when he grew up.'' Doug spent 2 years
    seeking an accurate diagnosis for his shortness of breath. During that
    time, he was misdiagnosed with depression, sleep apnea, altitude
    sickness and asthma. Ultimately Doug was diagnosed and treated, however
    he had to give up his career due to his PH.
        Thank you again for your consideration of the PH community's
    priorities as you develop the fiscal year 2021 L-HHS Appropriations
    bill.

        [This statement was submitted by Mr. Brad A. Wong, President and
    CEO,
    Pulmonary Hypertension Association.]
                                     ______

                   Prepared Statement of Refugee Council USA
        Chairman Shelby, Ranking Member Leahy, and members of the
    subcommittee, thank you for this opportunity to submit these funding
    and oversight recommendations for fiscal year 2021 on behalf of the 26-
    member organizations of Refugee Council USA (RCUSA) \1\ dedicated to
    refugee protection, welcome, and integration, and representing the
    interests of refugees, refugee families, and volunteers and community
    members across the country who support refugees and resettlement. RCUSA
    recommends fiscal year 2021 funding levels of $4,692,446,000 for the
    Department of Health and Human Services' Refugee and Entrant Assistance
    (REA) account.
    ---------------------------------------------------------------------------
        \1\ A list of RCUSA member organizations can be viewed at
    RCUSA.org.
    ---------------------------------------------------------------------------
        The REA account funds the Office of Refugee Resettlement (ORR)
    within the Administration of Children and Families. ORR funding
    provides critical Federal investments in the states and local
    communities that welcome refugees, and is a crucial component of
    fostering refugee integration and economic contributions. In addition
    to new refugee arrivals, ORR funding provides essential services to
    refugees who arrived in recent years, unaccompanied refugee minors,
    asylees, Cuban and Haitian entrants, Special Immigrants Visa (SIV)
    holders from Afghanistan and Iraq who served the U.S. mission in those
    countries, survivors of human trafficking, survivors of torture, and
    unaccompanied children. Through ORR programs and associated public-
    private partnerships, in fiscal year 2020 the account is projected to
    serve 171,420,\2\ and in fiscal year 2021, 159,520.\3\
    ---------------------------------------------------------------------------
        \2\ The FY20 figure includes: 18,000 refugees, 14,900 SIVs, 46,000
    asylees, 22,520 Cubans/Haitians, 1,000 trafficking victims, and 69,000
    unaccompanied children. We are on pace to assist 50,000 UCs, but trends
    indicate that the numbers could spike up to 69,000.
        \3\ The FY21 CBJ's figure includes: 90,520 new arrivals (incl.
    18,000 refugees and 45,600 asylees). In addition, we estimate up to
    69,000 UCs in FY21.
    ---------------------------------------------------------------------------
        RCUSA recommends an increase for the Transitional Medical
    Assistance (TAMS) program; domestic and foreign-born trafficking
    survivor services; and, torture survivor assistance. TAMS funds
    critical initial assistance to refugees and other new arrivals;
    programs for vulnerable unaccompanied refugee children; and the highly
    effective Matching-Grant program, which leverages public funds with
    private donations, empowering refugees to secure employment within 6
    months. RCUSA appreciates the small increase in funding from fiscal
    year 2020 to fiscal year 2021 for trafficking victims, to help serve
    trafficking survivors, given the 962 percent increase in identified
    victims in need of trauma-informed case management services since
    2002.\4\ RCUSA commends as a step in the right direction the increase
    in fiscal year 2019 and fiscal year 2020 to aid victims of torture, and
    yet the services gap remains extraordinary. Approximately 44 percent of
    the program's beneficiaries--refugees, asylees and asylum seekers--are
    torture survivors. Even with the increased appropriation many programs
    have wait lists and torture survivor populations across the country
    have no access to services at all. We urge continued increases for
    these urgent needs.
    ---------------------------------------------------------------------------
        \4\ This is based on the 2002 ORR report to Congress and the 2016
    TIP report.
    ---------------------------------------------------------------------------
        The U.S. is one of roughly 27 resettlement countries. The U.S.
    Refugee Admissions Program (USRAP) process begins with rigorous
    screening to determine that applicants qualify for refugee status and
    are not a security risk. The U.S. admits a small percentage of the
    world's refugees, often the most vulnerable, for resettlement
    (including unaccompanied refugee minors) through the USRAP. Refugees
    arriving through the USRAP, along with Iraqi and Afghan SIV recipients,
    are placed with one of nine voluntary nonprofit resettlement agencies
    that have signed a Cooperative Agreement with the State Department and
    have local affiliates in over 200 sites in communities around the
    country. Six of the nine voluntary agency networks are faith-based, and
    harness the energy of many faith communities to help welcome newcomers
    to their new communities. These community organizations ensure that a
    core group of services are provided during the first 30-90 days after a
    refugee's arrival, including the provision of food, housing, clothing,
    employment services, follow-up medical care, and other necessary
    services. After this initial period, ORR funds integration services
    through both the states and community partners around the country.
        Once refugees arrive in the U.S., they are supported to become
    oriented to the community, learn English, enroll their children in
    school, and find employment. With this crucial support, they often are
    not only able to support themselves and their families but also become
    contributors to their new communities, integrating with and bringing
    innovation to our neighborhoods. The following highlights critical
    programs within the REA account, but does not include all program
    activities:
    Transitional & Medical Services (TAMS)
        Matching Grant Program: The Matching Grant Program, a public-
    private partnership, is ORR's most successful program to help refugees
    achieve early self-sufficiency. It empowers refugees and other eligible
    individuals to become self-sufficient within 6 months without needing
    to access Federal or state assistance programs. The program leverages
    public funds with private donations at a 2:1 ratio, with
    nongovernmental agencies working hand-in-hand with local communities to
    match Federal government contributions with private resources.
        Unaccompanied Refugee Minors: Unaccompanied refugee minors (URM)
    are among the most vulnerable of refugees, and the U.S. is the only
    country that permanently resettles them. URM have been lost or
    separated from their parents and families and have often suffered
    greatly not only in their home country but also in countries near their
    homelands where they have sought refuge. This is a small but crucial
    U.S. program to protect the most vulnerable of these at-risk children
    and provide them a new life in the U.S.
    Refugee Support Services (RSS)
        In fiscal year 2018, the Administration merged the administration
    of Refugee Social Services and Targeted Assistance into one new
    program, Refugee Support Services; Congress also continues to require
    funding for the Refugee Health Promotion program and ORR is providing
    it as an RSS set aside. Congress has not allocated less than $200
    million cumulatively for these three programs in at least 15 years, not
    even taking inflation into account. RCUSA recommends a small increase
    in TAMS and RSS funding to account for cost of living, ongoing
    integration needs of ORR populations of concern, and to assure gap
    filling caused by reduced numbers of Reception and Placement sites.
        RSS supports initial employability services and other integration
    services that address initial barriers to employment. It is provided to
    states and non-profit organizations based on formula pertaining to
    anticipated refugee and other arrivals and competitive grants.
    Additionally, school Impact funding, provided through a formula in the
    RSS program, supports impacted school districts with the funds
    necessary for activities, like English as a Second Language
    instruction, that will lead to the effective integration and education
    of vulnerable children.
        RSS additionally, provides support to states with particularly high
    refugee arrivals, including via secondary migration, and services to
    refugees requiring longer term employment support. It also provides
    specialized services to meeting the unique needs of certain groups,
    such as youth programming and career development for higher skilled
    refugees looking to recertify in their field.
        Finally, RSS supports critical healthcare investments by offering
    grants which helps refugees navigate the U.S. healthcare system. It is
    awarded competitively and helps fund State Refugee Health Coordinators,
    provide language access at Federal healthcare centers, and supports
    mental health screening of refugees, among other things. RCUSA strongly
    opposes the proposed elimination of RHP.
    Survivors of Trafficking
        Since the passage of the Trafficking Victims Protection Act in
    2000, victims of human trafficking have received case management
    services through HHS's partnership with NGO providers, including
    assistance obtaining and referrals to medical and psychological
    treatment, housing, educational programs, life skills development,
    legal services, and other assistance. Funding is also utilized to
    promote public awareness, training, and coalition building to raise
    awareness about human trafficking among law enforcement, social
    services, medical staff, and other potential first responders, in
    addition to other to other faith-based and community groups. These
    grants are crucial to providing victims, including children,
    integrative aid and services once they have been identified as a victim
    of trafficking. Increased funding to $20 million for each domestic and
    foreign-born victim is requested to adequately serve trafficking
    survivors. This funding is critical due to the increases in victim
    identification efforts. In fact, there has been a 843 percent increase
    in the number of foreign-born individuals served by the program from
    2003 to fiscal year 2016.
    Survivors of Torture
        The Services to Survivors of Torture grant program, which was first
    authorized with strong bi-partisan support in 1998 by the Torture
    Victims Relief Act (PL 105-320-OCT. 30, 1998), funds non-profit
    organizations to provide healing, legal, and social services to
    refugees, asylees and asylum seekers who endured torture abroad and now
    reside in the U.S. These holistic, trauma-informed services play a key
    role in helping survivors restore their dignity and health, rebuild
    their lives, and integrate into communities and economies. In
    particular, torture rehabilitation has proven to have significant
    positive impacts on employment and healthcare cost savings. RCUSA's
    proposed $28 million for torture survivor assistance reflects that many
    programs have wait lists and large survivor populations across the
    country have no access to services at all.
    Unaccompanied Children (UCs)
        In fiscal year 2017, 40,894 children were referred to the custody
    and care of the Office of Refugee Resettlement (ORR). ORR provides
    children in its care with food, shelter, and clothing as well as
    educational, medical, mental health, and case management services. For
    a limited number of children, ORR provides family reunification
    services by social services providers; specifically, ``home studies''
    to help ensure children are released into safe placements and ``post-
    release services'' to facilitate family and community integration after
    reunification. Post-release social services by providers are an
    important means of assuring the continued well-being and adjustment of
    the children and preventing such dangers as human trafficking. Post-
    release services also help families to understand the child's legal
    obligations as well as provide critical protection and support to the
    families themselves as the children are integrated into their new
    communities. These practices not only promote child safety, but they
    can help reduce the need for involvement with the public child welfare
    system post-release. RCUSA recommends an increase to at least $1.983
    billion in base UC funds for these programs that promote successful
    family reunification and stability, which serve the best interest of
    the children. RCUSA does not support an expansion of detention,
    including through use of large-scale institutional facilities, or
    efforts to support forced family separation.
        Our nation's historic commitment to refugees through domestic
    resettlement provides lifesaving support and protection to the world's
    most vulnerable. Our nation's historic commitment to displaced
    populations helps us build strategic alliances and stabilize those
    regions most affected by the largest displacement crisis in global
    history. This helps keep America safe. Thank you for considering our
    funding recommendations for fiscal year 2021.
    ORR Contingency Fund
        Numerous times in the last decade, ORR has had to reprogram funds
    from within or outside the agency to maintain vital services for
    refugees, unaccompanied children and other populations of concern. This
    occurred for example in 2012 ($115 million), in 2014 ($94 million), in
    2018 ($446 million), and in 2019 ($385 million). These major shortfalls
    in the last decade demonstrate that ORR and the vulnerable populations
    that it serves need stronger financial footing. To avoid future
    destabilizing reprogramming, RCUSA supports the Administration's
    request for a $2 billion contingency fund for UCs so that ORR can
    flexibly meet urgent and unanticipated needs of the vulnerable
    populations that it serves. However, RCUSA requests that the $2 billion
    be available for ORR to utilize in a single year and that $100 million
    of the contingency fund go toward replenishing the TAMS and RSS
    programs. To the extent Congress does not appropriate an ORR
    contingency fund, Congress should ensure that the $2 billion is added
    to base funding for UCs.
    RCUSA Urges Congress to Support Stabilization of Resettlement
            Infrastructure
        Finally, RCUSA urges Congress to encourage the Office of Refugee
    Resettlement (ORR) to ensure that resettlement agencies are able to
    maintain their infrastructure and capacity to continue to serve
    refugees and other populations of concern. RCUSA also expresses concern
    that the administration failed to conduct appropriate consultation with
    Congress regarding the fiscal year 2020 Presidential Determination and
    direct a report to assess the impact that the extended moratorium on
    refugee arrivals had on refugees in the pipeline. RUCSA urges Congress
    to hold the administration accountable in meeting the fiscal year 2020
    Presidential Determination of 18,000, and returning the refugee
    admissions ceiling to the historic average of 95,000 in fiscal year
    2021.

                                     ______

           Prepared Statement of the Regional Centers of Excellence
                            in Vector-Borne Diseases
        Dear Chairman Blunt and Ranking Member Murray:
        On behalf of the Regional Centers of Excellence in Vector-Borne
    Diseases, we the undersigned write to express our strong support for
    efforts related to vector-borne diseases (VBDs) at the Centers for
    Disease Control and Prevention (CDC). We urge you to provide at least
    $8.3 billion for CDC in the fiscal year 2021 Labor, Health and Human
    Services, Education, and Related Agencies appropriations bills, with
    full funding for VBD efforts authorized by the Kay Hagan TICK Act and
    the Pandemic and All Hazards Preparedness and Advancing Innovation Act.
        Many notorious public health threats, such as the pathogens which
    cause Lyme disease, Zika, West Nile, and malaria, are transmitted by
    tick and mosquito arthropod vectors. Between 2004 and 2016, reported
    human cases of diseases transmitted through the bites of arthropod
    vectors tripled in the United States. Disease vectors also pose
    significant threats to both livestock and companion animals. These
    issues stem from not only native ticks and mosquitoes, but also the
    introduction of new species to our communities, as evidenced by the
    recent identification of the invasive Asian longhorned tick in the
    eastern US.
        The five Regional Centers of Excellence in Vector-Borne Diseases
    were established by the CDC in December 2016 to support our public
    health infrastructure aimed at combatting these threats. We conduct
    applied research to develop and validate effective prevention and
    control tools to respond to VBD outbreaks, train current and future
    public health entomologists in the skills required to address VBD
    threats, and support effective collaborative relationships between
    academic and public health communities across our regions. Solutions to
    addressing the growing menace of VBDs in the United States are complex
    and require robust, dedicated, and sustained funding now more than
    ever.
        As your subcommittee considers fiscal year 2021 funding levels for
    CDC, the Regional Centers of Excellence in Vector-Borne Diseases
    encourage you to include at least $66.195 million in funding for the
    CDC's Division of Vector-Borne Diseases (DVBD), as was proposed in the
    President's Budget Request for fiscal year 2021, to support VBD
    prevention, surveillance, testing, and response activities.
        Our collaborative networks applaud the recent passage of the Kay
    Hagan TICK Act, a provision in the fiscal year 2020 Further Consolidate
    Appropriations Act, H.R. 1865, signed into law by the President on
    December 20, 2019 (Public Law 116-94); and the Pandemic and All Hazards
    Preparedness and Advancing Innovation Act, which in Section 607,
    Strengthening Mosquito Abatement for Safety and Health (SMASH), details
    support for important mosquito abatement activities. Providing the full
    level of funding authorized by these important pieces of legislation
    would be highly effective in facilitating the development and
    implementation of a national strategy to combat VBDs.
        The Kay Hagan TICK Act authorizes $20 million to support the CDC
    Epidemiology and Laboratory Capacity (ELC) grant program. The ELC
    program is particularly important for efforts related to the
    surveillance, detection, response, and prevention of infectious
    diseases, including VBD. Last year the CDC's DVBD received requests for
    nearly $50 million from the state departments of health for VBD through
    the ELC program. However, the DVBD was only able to support $18.2
    million, roughly a third of the needed resources to address VBDs across
    the nation.
        The Kay Hagan TICK Act also authorizes $10 million per year to
    support the continuation of our five Regional Centers of Excellence in
    Vector-Borne Disease programs. Continued support will allow us to build
    on the successes achieved since 2016 in supporting surveillance
    efforts, translating research findings and information into public
    health action, and promoting outreach and education to empower our
    communities.
        The CDC is the first line of defense for our nation's health,
    safety, and security, and it is crucial that the agency has the
    resources it needs to protect Americans from serious threats like VBDs.
    On behalf of our collaborative network of stakeholders invested in the
    mission to reduce the ongoing as well as emerging threats posed by
    ticks, mosquitoes, and other arthropod vectors, we thank you for your
    commitment to this critical issue.
        Sincerely,

        Lyric Bartholomay, PhD, Program Co-Director
        Susan Paskewitz, PhD, Program Co-Director
        Midwest Center of Excellence for Vector-Borne Diseases
        Laura C. Harrington, PhD, Program Director
        Northeast Regional Center for Excellence in Vector-Borne Diseases
        Christopher M. Barker, PhD, Program Co-Director
        William Walton, PhD Program Co-Director
        Pacific Southwest Center of Excellence in Vector-Borne Diseases
        Rhoel R. Dinglasan, PhD, MPH, Program Director
        Southeastern Center of Excellence in Vector-Borne Diseases
        Scott C. Weaver, PhD, Program Director
        Western Gulf Center of Excellence for Vector-Borne Diseases
                                     ______

                     Prepared Statement of Research!America
        On behalf of Research!America and our alliance, which advocates for
    science, discovery, and innovation to achieve better health for all,
    thank you for this opportunity to submit testimony to the Senate
    Appropriations Subcommittee on Labor, Health and Human Services,
    Education, and Related Agencies on fiscal year 2021 appropriations. We
    are grateful that for fiscal year 2020, the base budgets of the
    National Institutes of Health (NIH), the Centers for Disease Control
    and Prevention (CDC), and the Agency for Healthcare Research and
    Quality (AHRQ) were increased and the Subcommittee additionally
    provided dedicated funding for critical research programs. We again ask
    that you provide increased funding for NIH (least $44.7 billion), CDC
    ($8.3 billion), and AHRQ ($471 million) in fiscal year 2021.
                       the national institutes of health
        Each year, more than 125,000 Americans lose their lives by age 45
    to physical and mental illness. Because personal loss is a tragedy, not
    a statistic, it is impossible to fully capture the devastating impact
    of so many lives cut short. However, it is possible to deploy science
    to successfully fight back. The research that NIH funds delivers
    health, social, and economic benefits that endure and multiply as time
    goes on. With the current level of investment, NIH is only able to fund
    20 percent of the meritorious grant proposals it receives. The
    steadfast commitment of Federal policymakers from both sides of the
    aisle to rebuild the NIH budget over the past decade has helped restore
    our nation's place at the cutting edge of medical progress. It is
    essential that we keep up that mantle and gain the upper hand over
    diseases that rob us of time, independence, and loved ones.
        The NIH is the world's leading funder of basic biomedical research,
    and Americans recognize the value this research delivers. According to
    a national survey Research!America commissioned in January 2020, 88
    percent of Americans believe it is important for Congress and the
    President to assign a high priority to faster medical progress. As it
    stands, our nation spends about 5 cents of each health dollar on
    research to prevent, cure and treat disease. Some 61 percent of
    Americans say that this level of investment is not enough. Americans
    want medical progress, and they want the U.S. to do more to drive it.
        More than 80 percent of NIH funding is awarded through almost
    50,000 competitive grants to more than 300,000 researchers at over
    2,500 universities, medical schools, and other research institutions in
    every state. Research supported by NIH is typically at the early, non-
    commercial stages of the research pipeline; NIH funding works in tandem
    with critical private sector investment and development while
    delivering significant economic benefits. Basic research funded by the
    NIH fuels the entry of new drugs into the market, providing an
    estimated return on public investment of $1.43 for every dollar
    invested. The Human Genome Project has produced $1 trillion of economic
    growth--a 178-fold return on investment. The NIH also plays an integral
    role in educating and training America's future scientists and medical
    innovators by sponsoring fellowships and training grants.
        NIH advances the interests of America and Americans in other
    crucial ways. For example, NIH is funding a new genome center for the
    All of Us Research Program, which will enable researchers to better
    understand the value, including the strengths and limitations, of long-
    read sequencing as it relates to exploring more elusive parts of the
    genome. The Brain Research through Advancing Innovative
    Neurotechnologies (BRAIN) Initiative, of which NIH is a part, is aimed
    at revolutionizing our understanding of the human brain. The Initiative
    is working to accelerate the development and application of innovative
    technologies, through which researchers will be able to draw a new
    picture of the brain that, for the first time, shows how individual
    cells and complex neural circuits interact in both time and space.
        We believe it is in the strategic interests of the U.S. to increase
    funding for NIH to at least $44.7 billion in fiscal year 2021, an
    increase of $3 billion over fiscal year 2020 enacted. Research!America
    believes this funding increase is warranted by the ever-growing
    magnitude of our health challenges, including the ongoing COVID-19
    pandemic, the tangible and intangible costs of inaction, and the
    undeniable return on medical progress.
                 the centers for disease control and prevention
        We urge you to fund the Centers for Disease Control and Prevention
    (CDC) at a level of $8.3 billion in fiscal year 2021, a 4.8 percent
    increase. As demonstrated by the ongoing COVID-19 pandemic, public
    health threats do not respect international borders, and in our
    increasingly globalized world, we are more vulnerable than ever to
    emerging, deadly infectious diseases.
        CDC's work is also crucial to combating the opioid epidemic, which
    is claiming approximately 130 American lives each day, and to tackling
    antimicrobial resistance. Our public health surveillance infrastructure
    is vital to a secure and prosperous future for our nation as are our
    roads and highways--we cannot afford to ignore it.
        CDC is tasked with protecting and advancing the nation's health,
    and over the past 70 years it has worked diligently to thwart deadly
    outbreaks, costly pandemics, and debilitating disease. Moreover, CDC
    plays a key role in research that leads to life-saving vaccines,
    bolsters our nation's defense against and response to bioterrorism, and
    improves health tracking and data analytics. CDC's work has benefited
    Americans in myriad ways, including investigating an outbreak of acute
    lung injury from use of e-cigarette or vaping products, supporting our
    national surveillance infrastructure to detect and prevent
    antimicrobial resistant infections, providing accurate and accessible
    health information, and preventing millions of hospitalizations.
        Ebola, Zika, influenza, the opioid epidemic, measles outbreaks,
    and, most recently, the ongoing, novel COVID-19 outbreak have shown
    just how critical CDC is to the health of our nation and have also
    revealed the enormity of the challenge the agency faces as it works to
    safeguard American lives. To protect us, CDC scientists must be on the
    ground fighting public health threats wherever and whenever they occur.
    But there is a growing gap between the funding provided to CDC and the
    demands and challenges placed before the agency. We request that CDC
    receive at least $8.3 billion in fiscal year 2021, $380 million over
    fiscal year 2020 enacted, to carry out its crucially important
    responsibilities.
                   agency for healthcare research and quality
        AHRQ is the lead Federal agency that is tasked with making sure our
    nation is not just making medical progress but that this progress
    translates into more effective, efficient, and affordable healthcare
    for Americans across the country. The health services research that
    AHRQ conducts and supports has reduced medical errors, ensured that
    providers in rural areas have the same access to cutting-edge medicine
    as those in urban areas, identified ways to squeeze out costly
    duplication and waste from the healthcare system, and benefited
    patients and taxpayers in numerous other ways. AHRQ has historically
    been grossly underfunded relative to the need and potential for cost-
    and life-saving improvements in American healthcare delivery. We urge
    you to fund AHRQ at a level of $471 million, a 39 percent increase over
    fiscal year 2020 enacted, in fiscal year 2021.
        AHRQ is one of the Federal agencies responsible for ensuring
    medical progress translates into better patient care. The value of
    medical discovery and development hinge on smart healthcare delivery.
    Out of the $3.82 trillion in annual spending on healthcare, an
    estimated 25 percent could be prevented by addressing errors and
    inefficiency.
        AHRQ-funded research identifies and addresses this waste of limited
    healthcare dollars, empowering patients to receive the right care at
    the right time in the right settings. For example, AHRQ-funded research
    has helped identify methicillin-resistant Staphylococcus aureus (MRSA),
    which causes 80,000 invasive infections each year in the U.S., in long-
    term care facilities to address the increase of hospital patients
    affected by healthcare-associated infections. This research showed that
    MRSA infections and hospitalizations were reduced by 30 percent in
    patients using a treatment that cleansed the bacteria from their skin
    or noses. AHRQ-funded research has played a pivotal role in reducing
    hospital-acquired conditions by nearly 1 million from 2014-2017, saving
    lives and $7.7 billion in healthcare costs.
        AHRQ is a nimble and critical healthcare investment. If we
    underinvest in AHRQ, we are inviting unnecessary healthcare spending
    and wasting the opportunity to ensure patients receive the quality care
    they need.
        We appreciate your consideration of our funding requests and thank
    you for your stewardship over these critically important Federal
    spending priorities.
        Sincerely.

        [This statement was submitted by Mary Woolley, President and CEO,
    Research!America.]
                                     ______

          Prepared Statement of the Restless Legs Syndrome Foundation
        Chairman Blunt, Ranking Member Murray, and distinguished members of
    the Subcommittee, as you work to develop the fiscal year 2021 Labor-
    Health and Human Services Appropriations bill, thank you for
    considering the views of the community of physicians, researchers,
    patients, and caregivers affected by Restless Legs Syndrome (RLS).
    Please keep the needs of this community in mind, especially as you
    continue to work to address the opioid crisis.
                            about the rls foundation
        The Restless Legs Syndrome Foundation is a nonprofit Sec. 501(c)(3)
    organization dedicated to improving the lives of men, women, and
    children living with this often-devastating neurological condition. The
    Foundation works to increase awareness, improve treatments, and support
    research to find a cure. From a few volunteers meeting in a member's
    home in 1992, the Foundation has grown steadily; it now has members in
    every state, local support groups, and a track record that includes
    over $1.8 million provided to support translational research.
                                   about rls
        Restless legs syndrome (RLS) is essentially an irregular biological
    drive, like hunger or thirst, that forces affected individuals to keep
    moving, thus reducing their ability to rest. Patients with this disease
    experience a deep, viscerally-irritating sensation in the legs that
    continues to increase until they are literally forced to move their
    legs or get up and walk; and this sensation only abates so long as the
    individual keeps moving. RLS is best characterized as a neurological,
    sensory-motor disorder with symptoms that are triggered from within the
    brain itself. It is estimated that up to 5 to 7 percent of the U.S.
    population may have RLS, of which half will have moderate to severe
    stages of the disease. RLS impacts men, women, and children, though it
    is 3 to 4 times more common in women and twice as common in older
    Americans.
        Due to the inability to sleep and work, RLS can cause disability,
    depression, and suicidal ideation, as well as increased risk for co-
    morbid conditions such as heart attack, stroke, and Alzheimer's. There
    is no cure, and the current standards of care features several
    medications, which do not provide life-long coverage. One of the
    established effective treatment options for this disease is low-total
    daily dose opioid medications. These are commonly used when all other
    drug classes have failed. Research and clinical experience indicates
    that the dose of opioids typically used to manage RLS effectively
    without addiction or drug tolerance issues is significantly lower than
    dosages used to treat chronic pain.
                 fiscal year 2021 appropriations recommendations
        The RLS Foundation joins the broader medical research community in
    thanking Congress for continuing to support the National Institutes of
    Health with sustainable growth. Please continue to advance scientific
    progress through proportional funding increases by providing at least a
    $3 billion funding increase for fiscal year 2021 to bring NIH's budget
    up to $44.7 billion.
        In this regard, please provide proportional funding increases for
    all NIH Institutes and Centers, including, but not limited to the
    National Institute of Neurological Disorders and Stroke (NINDS), the
    National Heart, Lung, and Blood Institute (NHLBI), the National
    Institute on Drug Abuse (NIDA), and the National Institute of Mental
    Health (NIMH). Research on RLS and similar neurological movement
    disorders is directly related to efforts targeting the opioid epidemic,
    as many patients with these disorders utilize very low total daily
    doses of opioid therapies to manage their condition. Additionally,
    related sleep disorders research activities impact many conditions and
    are studied across various Institutes and Centers at NIH.
                           rls and the opioid crisis
        While you consider the Committee's work to address the opioid
    epidemic through this fiscal year's appropriations bill, the RLS
    Foundation asks that you protect the needs of patient communities who
    depend on appropriate access to low total daily doses of opioid
    therapies to manage their debilitating condition. RLS is not a chronic
    pain condition, and many in our community utilize these medications to
    treat underlying neuropathology issues and not sensations of pain.
    Studies have shown that appropriate access to these therapies allows
    patients to live productive lives without an increased risk of
    developing opioid use disorder. As you consider various legislative
    proposals and work with Federal agencies, please consider the needs of
    patients who rely on the regular use of low total daily doses of
    opioids to manage RLS by supporting a diagnosis-appropriate safe harbor
    for RLS patients, so they do not face arbitrary barriers.
        I would like to share with you the experience of Lewis M. Phelps
    from California, a 76 was 76-year old member of the RLS Foundation and
    former chairman of the RLS Foundation board of directors.
        ``I have had RLS for more than 30 years. After many years of
    treatment by doctors around the country (as I moved for professional
    purposes), I finally got decent control over my symptoms about 10 years
    ago with Mirapex, a dopamine-enhancing drug. Unfortunately, that didn't
    last. Over time, I began to experience what RLS experts call
    ``augmentation,'' which means that the symptoms not only return, they
    are stronger, they start earlier in the day, and they affect more of my
    body. The doctor's response was to increase my dosage and keep adding
    additional drugs that he thought might help. That just kept making
    things worse. Finally, I consulted with a physician in my area who is
    one of the nation's leading experts on RLS. 'Lew,' he said, 'you are
    the poster child for augmentation. We need to get you off dopamine
    drugs.' He immediately withdrew me from all of the drugs I was taking
    and started me on a low daily dose of methadone. It has been amazingly
    helpful for me. My RLS symptoms are completely controlled. I have been
    on the same dose ever since I started on Methadone 5 years ago. I have
    no side effects. Methadone has made it possible for me to live a normal
    life again.''
        It's worth noting that the cost of my monthly drug treatment has
    fallen from $600 per month to less than $40 per month with this
    approach. Methadone is not only much more effective for treating my
    RLS, it is much more cost-effective.
        ``The only problem I have right now is that pharmacists are
    becoming afraid to fill my prescription, even though it is for only 10
    mg of methadone per day--far lower than the maximum safe dose level.
    Over-reaction to the opioid crisis by the medical and pharmaceutical
    industries, and by some regulators, is very worrisome to me. I know
    from personal contacts that many people who suffer from RLS can't get
    an opioid prescription, even when they have no other viable
    alternatives. If I were to lose access to methadone, my life would
    become living hell. There are no other medications available that will
    prevent me from suffering very badly with RLS.''
        Lew's story is emblematic of the need for increased medical
    research, access to treatment, professional education, and public
    awareness. Thank you for your time and consideration of our requests.

        [This statement was submitted by Karla M. Dzienkowski, RN, BSN,
    Executive
    Director, Restless Legs Syndrome Foundation.]

                                     ______

                  Prepared Statement of Rose Jennifer D.  deg.
                     Prepared Statement of Jennifer D. Rose
        Dear Senators,
        I am writing as the sister of a 29-year-old man who is suffering
    and disabled by his severe Bipolar 1 illness.
        My brother is a deeply good and kind person, and works hard to
    collaborate with his psychiatrist and other medical professionals.
        He is very consistent with medications, and yet--despite all his
    efforts and the support of his family--he continues to suffer
    profoundly from his bipolar illness. The medications he is on have
    terrible side-effects (diarrhea, nausea, confusion, headaches,
    depression, etc. ) and yet he chooses to suffer through them because he
    prioritizes his brain's stability.
        These past few weeks (despite the fact that he has been in
    therapeutic range for his lithium) as the result of another prescribed
    medication, he ended up in a severe manic episode that led to him going
    missing for 12 hours this past weekend. This was horrific for my
    family, as he was without sleep for roughly 96 hours and was
    experiencing severe psychosis, lost touch with reality, and vulnerable
    to risk-taking behaviors.
        Again, this is a person who is trying to be well and stay well, and
    has the unwavering support of his family. During his episode, four of
    his family members, including myself, ensured he was consistently
    taking his meds, which he could not handle on his own due to confusion
    and loss of focus.
        We are lucky he is still alive and was voluntarily admitted into a
    psychiatric hospital.
        We should not have to rely on being ``lucky.'' This is a profoundly
    painful, horrifying and disabling illness, and individuals and families
    like ours are not receiving enough basic support to survive this kind
    of illness. Medications are not anywhere near where we need them to be,
    and the only medication that works well for my brother (lithium) has
    long term implications for his thyroid and kidneys. We need better
    options for medications with fewer side effects.
        Without question, we need more research for the cure and treatment
    of serious mental illness. This is a top priority.
        I am urging NIMH's priority to be focused on the cures and
    treatment for serious mental illnesses like schizophrenia and bipolar.
        Sincerely.
                                     ______

                   Prepared Statement of Rotary International
        Chairman Blunt, members of the Subcommittee: Rotary appreciates the
    opportunity to encourage continuation of funding for fiscal year 2021
    to support the polio eradication activities of the U.S. Centers for
    Disease Control and Prevention (CDC). The CDC is a spearheading partner
    of the Global Polio Eradication Initiative (GPEI), an unprecedented
    model of cooperation among national governments, civil society and UN
    agencies which reach the most vulnerable children through the safe,
    cost-effective polio immunization. Rotary International requests the
    Subcommittee provide $176 million for the polio eradication activities
    of the CDC--level funding--to ensure we end polio transmission, protect
    polio free areas, and leverage the resources developed through this
    global effort for value-added impact.
        The 325,000 members of Rotary clubs in the US appreciate the United
    States' generous support and longstanding leadership. Rotary, including
    matching funds from the Gates Foundation, has contributed more than
    US$2.1 billion and thousands of hours of volunteer service to protect
    children from polio; and will continue this work until the world is
    certified polio free. Continued US leadership remains vital to achieve
    the goal of a polio free world and ensure that the investment in polio
    eradication infrastructure and resources lives on to benefit other
    health efforts.
               progress in the global program to eradicate polio
        Since the launch of the GPEI in 1988, eradication efforts have led
    to more than a 99.9 percent decrease in cases. Over 18 million people
    have been spared disability, and over 900,000 polio-related deaths have
    been averted. In addition, more than 1.5 million childhood deaths have
    been prevented, thanks to the systematic administration of Vitamin A
    during polio campaigns.
        Type 2 (WPV2) was declared eradicated in September 2015 and the
    certification of the eradication of wild poliovirus type 3 (WPV3) was
    announced in October 2019. Eradicating strains of the polio virus is
    further proof that a polio-free world is achievable.
        Only two countries, Afghanistan and Pakistan, confirmed cases of
    wild polio in 2019. Wild poliovirus type 1 caused all the wild virus
    cases and these are found in high risk areas of
        Afghanistan (29 cases) and Pakistan (146 cases). Nigeria, which
    experienced an outbreak in 2016, has not confirmed any new cases since
    August of 2016 despite humanitarian crises. It has now been more than 3
    years since the last case of wild polio in Africa, paving the way for
    that region to be the next to be certified free from wild polio virus.
        2019 also saw several outbreaks due to genetically-distinct
    circulating vaccine-derived poliovirus type 2. These outbreaks are not
    a failure of the vaccine, but result from a failure to sustain
    sufficiently high levels of routine immunization which causes the live,
    but weakened form of the virus used in the vaccine to revert over time
    to a more virulent, wild-like form.
        The combination of progress in the midst of challenges underscores
    the urgency of continued focus to stop polio virus transmission in
    these most complex environments while sustaining high levels of
    population immunity in polio free areas. Continued support for global
    surveillance is also essential to monitor and detect cases and virus
    transmission and also provide confidence in the absence of cases.
              cdc's vital role in global polio eradication progress
        The United States is the leader among donor nations in the drive to
    eradicate polio globally.
        Congressional support has enabled CDC to provide the following:
      --Provide $66.6 million to WHO for surveillance, technical staff and
            immunization activities' operational costs, primarily in
            Africa; and $3 million to UNICEF to support operational costs
            for National Immunization Days (NIDs) in all polio-endemic and
            outbreak countries.
      --Provide $28.3 million to UNICEF for the expansion of a Community
            Based Vaccinator Program in Pakistan that now includes over
            24,000 workers (nearly 90 percent of which are women) who reach
            4 million children annually with approximately 60 million doses
            of oral polio vaccine, and 2.9 million doses of inactivated
            polio vaccine.
      --Train global virologists in advanced poliovirus research and public
            health laboratory support. CDC's Atlanta laboratories serve as
            a global reference center and training facility.
      --Support the international assignment of 19 technical staff on
            direct, 2-year assignments to WHO and UNICEF to assist polio-
            endemic and polio-reinfected countries.
      --Provide technical leadership through three international polio
            consultants in Pakistan and one in Afghanistan; and build
            capacity through eight national polio consultants in
            Afghanistan.
      --Assign 489 public health professionals who completed CDC's Stop
            Transmission of Polio (STOP) training program to support
            critical national immunization functions in 42 at-risk
            countries in 2018. In 2019, the STOP program deployed 254
            professionals to 42 countries.
      --Train 339 staff at the Local Governing Area level in the highest
            risk states of Nigeria in CDC's National STOP program. These
            staff play a key role in interrupting transmission of wild
            polio. Nigeria's polio legacy planning will transition those
            workers to build lasting improvements in Nigeria's immunization
            system.
      --CDC has also trained 83 NSTOP officers in high risk districts in
            Pakistan who support the tracking of high risk and mobile
            populations.
        The CDC also provides the following global surveillance, virologic
    and other technical expertise:
      --Provides expertise in virology, diagnostics, and laboratory
            procedures, including quality assurance, and genomic sequencing
            of samples obtained worldwide.
      --Houses the leading specialized polio reference lab in the world
            which provides the largest volume of operational (poliovirus
            isolation) and sophisticated (genetic sequencing of polio
            viruses) lab support to the 146 laboratories of the global
            polio laboratory network.
      --Provides scientific and technical expertise to WHO on research
            issues regarding: (1) laboratory containment of wild poliovirus
            stocks following polio eradication, and (2) when and how to
            stop or modify polio vaccination worldwide following global
            certification of polio eradication.
      --Leads the efforts to raise awareness of the importance and urgency
            of transition planning amongst donors, country governments and
            other stakeholders to begin polio legacy planning to ensure
            that key polio functions, including immunization, comprehensive
            vaccine-preventable disease surveillance, outbreak response and
            biocontainment, will be in place post-eradication.
        In 2019, CDC also collaborated with Voice of America (VOA) to
    produce programs with scientifically accurate information about polio
    and the need for vaccinations to fight against early childhood
    diseases. The programs address identified vaccine issues and concerns
    through radio and television programming formats, including PSA's,
    radio dramas (if feasible), and field news reports to millions of
    Pashto-speaking Afghans and Pakistanis. VOA also trains journalists on
    ``best practices'' in covering polio, tracks stories written and
    compiles data for monitoring and evaluation.
        Rotary and GPEI partner agencies are working with CDC to assess use
    of polio assets, consisting of thousands of polio workers and an
    extensive laboratory and surveillance network, while continuing
    critical polio eradication activities to the extent possible to avoid
    backsliding during the current 2020 COVID-19 pandemic response. Rotary
    is confident that CDC's commitment to polio eradication is firm and
    knows that CDC's polio eradication program operates in some of the most
    vulnerable places in the world, the agency is determined to do its part
    in defeating the COVID-19 pandemic.
                        fiscal year 2021 budget request
        We respectfully $176 million in fiscal year 2021 for the polio
    eradication activities of CDC, the level appropriated by Congress in
    fiscal year 2020. With Congress' continued support for polio
    eradication in fiscal year 2021, CDC's priorities are to stop virus
    transmission in the remaining polio endemic and outbreak countries;
    reaching all children, particularly those in high risk areas with
    vaccine, and support rapid case response. CDC will also continue to
    work to strengthen surveillance for polioviruses. CDC also continues
    planning for a post-polio transition to advance additional global
    vaccine-preventable diseases (VPD) control and elimination/eradication
    targets as outlined in CDC's Strategic Framework for Global
    Immunization 2016-2020.
                         benefits of polio eradication
        Since 1988, tens of thousands of public health workers have been
    trained to manage massive immunization programs and investigate cases
    of acute flaccid paralysis. Cold chain, transport and communications
    systems for immunization have been strengthened. The global network of
    146 laboratories and trained personnel established by the GPEI also
    tracks measles, rubella, yellow fever, meningitis, and other deadly
    infectious diseases and will do so long after polio is eradicated.
        Besides the savings of more than $27 billion in health costs that
    has resulted from eradication efforts since 1988, a sustained polio
    free world will generate $14 billion in expected cumulative cost
    savings by 2050, when compared with the cost countries will incur for
    controlling the virus indefinitely. Polio eradication is a cost-
    effective public health investment with permanent benefits. On the
    other hand, as many as 200,000 children could be paralyzed annually in
    the next 10 years if the world fails to capitalize on the more than $17
    billion already invested in eradication. Success will ensure that the
    significant investment made by the US, Rotary International, and many
    other countries and entities, is protected in perpetuity.

        [This statement was submitted by Anne L. Matthews, Chair, Rotary's
    Polio
    Eradication Advocacy Task Force.]
                                     ______

        Prepared Statement of the Ryan White Medical Providers Coalition
        Chairman Blunt, Ranking Member Murray, and members of the
    Subcommittee my name is Dr. Ernie-Paul Barrette, and I serve as Medical
    Director of the HIV Clinic for the Washington University School of
    Medicine, in St. Louis, Missouri, the largest providers of medical care
    for patients with HIV/AIDS in Missouri. I am pleased to submit
    testimony on behalf of the Ryan White Medical Providers Coalition
    (RWMPC), a national coalition of medical providers and administrators
    who work in healthcare clinics supported by the Ryan White HIV/AIDS
    Program in the HIV/AIDS Bureau (HAB) at the Health Resources and
    Services Administration (HRSA).
        I want to thank the Subcommittee for increasing funding in fiscal
    year 2020 for both the Ryan White Program and the Bureau of Primary
    Health Care at HRSA by funding the bipartisan Ending the HIV Epidemic
    (ETE) initiative. Supporting the ETE initiative will help target
    jurisdictions scale up their ability to end the HIV epidemic by
    increasing access to HIV testing, prevention, care, and treatment
    services critical to reducing HIV transmission. However, increasing
    support for the Ryan White Program now would help jurisdictions
    nationwide continue to address ending the HIV epidemic while also
    meeting the new challenges COVID-19 presents. For fiscal year 2021,
    RWMPC requests $225.1 million (a 10 percent or $24 million increase)
    for Ryan White Part C, which supports approximately 350 HIV medical
    clinics nationwide. RWMPC also requests $500 million across the parts
    of the Ryan White Program in the next COVID-19 response bill to respond
    to a range of urgent patient and provider needs during the COVID-19
    pandemic.
        Additionally, RWMPC supports the Administration's fiscal year 2021
    request for additional resources for the ETE initiative to expand
    access to HIV prevention, care, and treatment. RWMPC continues to
    supports the fiscal year 2021 ETE proposal that includes $302 million
    for HRSA, including $165 million for the Ryan White Program to provide
    additional HIV care and treatment, as well as $137 million for the
    Bureau of Primary Health Care to support HIV prevention services,
    including providing Pre-Exposure Prophylaxis (PrEP), medication to
    prevent HIV.
        It is especially important now that any fiscal year 2021 increases
    for Ryan White Part C or for the ETE initiative be new, additional
    funding and not a repurposing of current resources. The additional
    pressure that the COVID-19 epidemic is placing on the public health
    infrastructure and medical facilities, including Ryan White clinics, is
    significant and limited resources cannot be further stretched. As of
    May 14, 2020, the Barnes Jewish Children's hospital network (of which
    my institution is a member) has completed 21,667 COVID-19 tests with
    2,596 positives (12 percent). Almost 30 percent of the COVID-19
    positive patients were admitted and discharged home. COVID-19 is a
    critical reason to strengthen the public heath infrastructure and
    medical clinics serving people living with HIV. Ryan White clinics are
    being pulled into wider COVID-19 response as experts in infectious
    diseases, while caring for vulnerable patients.
        Finally, as successful HIV prevention for individuals at risk for
    HIV is available now through education, routine HIV screening, and
    ready access to PrEP, post-exposure prophylaxis (PEP), harm reduction
    services, and other prevention tools, both known and yet to be
    discovered, RWMPC supports HRSA/HAB to allow Ryan White Program
    grantees to use their program income to reduce new HIV infections and
    for services that improve care and treatment outcomes for people living
    with HIV as long as the use of that program income does not reduce
    access to current or critical HIV care and treatment services provided
    by the grantee.
    How the Ryan White Program is Responding to the COVID-19 Pandemic
        Ryan White Program providers and community-based organizations
    nationwide are on the frontlines of the COVID-19 pandemic, and they
    need additional funding both in fiscal year 2021 and in the next COVID-
    19 response bill to meet the pressing current needs of their patients
    and clients. Ryan White clients are both vulnerable to the dangers of
    COVID-19 infection given their HIV status as well as low income--in
    2018, more than 61 percent of Ryan White Program clients were living at
    or below 100 percent of the Federal Poverty Level. The health and
    economic dangers of COVID-19 impact every aspect of patients' lives.
    Ryan White clinics nationwide have shifted care to telehealth to
    protect patients during the pandemic but providing access to phones
    with sufficient minutes for patients and telehealth equipment for
    providers and clinics has been an immediate cost that clinics must
    support. Additionally, clinics are providing significantly more case
    management services to support a growing number of patients who are
    experiencing increased or new impoverishment from the dramatic economic
    downturn over the last 2-3 months. Ryan White programs are covering new
    costs, including medications (prescription as well as over-the-counter
    medications to help treat COVID-19), behavioral health services, and
    access to basic necessities, such as food and shelter that is
    appropriate during COVID-19.
        As infectious diseases experts, Ryan White program teams are on the
    frontlines of both the HIV and COVID-19 pandemics, often doing multiple
    jobs at once now, and they need safety and protection, including PPE
    and mental health support, as well as the security that their team will
    continue to be employed during this dramatic economic disruption.
    Changes in program income based on the move to serve patients via
    telehealth, the loss of insurance coverage, and other budget cuts in
    the wake of COVID-19 make the need for Federal resources more critical
    than ever. Additional funding across the program's parts is needed to
    help people living with HIV stay in care and on treatment; maintain
    access to care and treatment during the economic downturn; meet the new
    needs of people who now are without health insurance; and prevent and
    contain the spread of COVID-19. Without this additional support, the
    Ryan White Program will fail to meet the immediate needs of its
    patients and clients while losing ground on responding effectively to
    COVID-19 and HIV.
    Washington University in Missouri is Leading the Way
        Washington University's Ryan White-funded clinic has served as the
    leading source of HIV primary care in Missouri for over 30 years. Each
    year our Ryan White clinic serves more patients with more complex
    needs. In 2019, the HIV Clinic at Washington University served 2,095
    patients, a 3 percent increase over 2018 in its number of patients
    living with HIV. Over the past fourteen years the clinic has seen a 109
    percent increase in patients living with HIV. Additionally,
    approximately 1 in 8 patients were fully uninsured and relied heavily
    on the Ryan White Program to fund their care, and a significant portion
    experienced housing insecurity. I expect the number of patients relying
    on the Ryan White Program for support to increase this year as a result
    of the significant economic downturn.
        Washington University, like most Ryan White Part C clinics,
    receives support from several parts of the Ryan White Program--
    including parts A, B, C and D--that provide medications and services,
    including additional medical care, dental services, mental health
    services, peer health coaches, case management, and transportation--all
    key components of the comprehensive Ryan White care model that produces
    outstanding outcomes. In 2019, we started a new program called Rapid
    Start in which newly diagnosed patients are seen quickly and offered
    treatment at their first appointment. This program has significantly
    decreased the time it takes for most patients to achieve viral
    suppression or HIV treatment success. Additionally, Washington
    University provides dedicated services for women who are pregnant and
    for patients reentering care after being out of care for over a year.
    Both services include nurses and social workers that accompany patients
    to appointments and do home visits during these critical times.
        Washington University also provides Pre-Exposure Prophylaxis (PrEP)
    services. This critical HIV prevention tool is integrated as part of
    prevention and primary care delivery. However, more support for the
    PrEP program is needed to scale up these services to meet patient and
    community needs, since Ryan White Program funding (including program
    income) currently is not permitted to support these key prevention
    services for individuals who are HIV negative.
    Ryan White Part C Clinics are Effective Medical Homes and Public Health
            Programs
        Ryan White Part C directly funds approximately 350 community health
    centers and clinics that provide comprehensive HIV medical care
    nationwide, serving more than 300,000 patients each year. These clinics
    are the primary method for delivering HIV care to rural jurisdictions--
    approximately half of all Part C providers serve rural communities. The
    program's comprehensive services engage and keep people in HIV care and
    treatment. This is critical, because HIV disease is infectious, so
    identifying, engaging, and retaining individuals living with HIV in
    effective care and treatment saves lives and benefits public health by
    stopping HIV transmission when individuals are virally suppressed.
        In 2018, over 87 percent of Ryan White patients were virally
    suppressed--a 25 percent increase in the program-wide viral suppression
    rate since 2010. Washington University aligns with this national
    average--in 2019, 87 percent of Washington University patients were
    virally suppressed. Also, 90 percent of HIV patients remain in care at
    Washington University--a critical fact since HIV disease is infectious,
    so identifying, engaging, and retaining persons living with HIV in
    effective care and treatment is an essential public health outcome.
    Ryan White Clinics Are Saving Lives and Reducing Costs
        Early access to HIV care and treatment helps patients with HIV live
    healthy and productive lives and is cost effective. A study from the
    University of Alabama at Birmingham's Ryan White clinic found that
    patients treated at later stages of HIV disease required 2.6 times more
    healthcare dollars than those receiving earlier treatment meeting
    Federal HIV treatment guidelines.
    Part C Clinics Are on the Frontlines of the Opioid Epidemic and Provide
            SUD Treatment
        Ryan White clinics serve a significant number of individuals living
    with both substance use disorder (SUD) and HIV. Part C clinics are able
    to deliver a range of medical and support services needed to prevent
    and treat substance use disorder as well as related infectious
    diseases, including HIV, HCV, and sexually-transmitted infections. The
    Washington University HIV Clinic has been a leader in expanding HIV
    testing to identify cases; has improved linkage-to-care services; and
    has used social media to improve engagement, retention, and medical
    outcomes among youth and young adult patients.
        However, the opioid epidemic continues to hit Missouri and other
    parts of the U.S. hard. Washington University patients struggle not
    only with HIV, but also with SUD and related infectious diseases, such
    as hepatitis C, with Missouri experiencing a dramatic increase in
    hepatitis C cases.\1\ The Washington University HIV Clinic started a
    hepatitis C clinic in order to treat this infection earlier.
    Additionally, as a result of the increased need for SUD treatment and
    overdose prevention services, the Ryan White clinic now offers
    Medication Assisted Treatment (MAT) with buprenorphine and naltrexone
    and access to naloxone (which reverses drug overdoses). Finally, the
    clinic received a CDC grant to treat opioid use disorder in HIV
    negative patients with complicated infections. We work to blend all of
    these services in order to keep our high-risk patients HIV free. The
    experience and expertise of Ryan White clinics should be supported to
    effectively respond to the opioid epidemic and more rapidly expand
    access to SUD services. This is especially important now during the
    COVID-19 pandemic when we are seeing increased risk for and anecdotal
    evidence of rising drug overdoses.
    ---------------------------------------------------------------------------
        \1\ Missouri Department of Health and Senior Services. Online at:
    https://health.mo.gov/data/hivstdaids/pdf/HepCKnownRisksFactSheets.pdf.
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    Increased Funding for Prevention at CDC and Research at NIH Also is
            Critical
        The ability to effectively respond to the syndemics of HIV,
    substance use disorder, and related infectious diseases such as HCV;
    sexually transmitted infections; and skin, soft tissue, and
    endovascular infections depends on CDC funding to enhance surveillance
    and prevention activities, and on NIH to continue to improve the tools
    to prevent and treat HIV and SUD and to learn how to effectively
    implement them. We support the Administration's fiscal year 2021
    request for $371 million for CDC to provide surveillance, response, and
    other HIV prevention services as part of the ETE initiative, and the
    Administration's fiscal year 2021 request for $58 million for CDC to
    address the infectious diseases consequences of the opioid epidemic. We
    also request $58 million through CDC's opioid and infectious diseases
    program in the next COVID-19 response package to support access to harm
    reduction services, including syringe services programs, that prevent
    overdose and infectious diseases transmission and connect individuals
    to SUD treatment and medical care. Finally, we support continued robust
    funding for NIH. This funding supports discoveries that will help end
    the HIV, HCV, and opioid epidemics.
                                   conclusion
        Thank you for your time and consideration of these requests, and
    please don't hesitate to contact me or Jenny Collier, Convener of the
    Ryan White Medical Providers Coalition, at
    jcollier@colliercollective.org if you have any questions or need
    additional information.

        [This statement was submitted by Ernie-Paul Barrette, MD, Medical
    Director, HIV Clinic for the Washington University School of Medicine,
    Member, Ryan White Medical Providers Coalition.]
                                     ______

                  Prepared Statement of the Sac and Fox Nation
        Chairman Blunt and esteemed members of the Committee, on behalf of
    the Sac and Fox Nation I thank you for the opportunity to submit this
    testimony for the record of our requests for the fiscal year 2021
    budgets and matters for consideration for Health and Human Services and
    Education. The Sac and Fox Nation looks forward to building a positive
    relationship with your committee and enhancing the future of our Tribal
    citizens.
                        department of education requests
      --Child Care Providers, Schools and Institutions of Higher Education
            should receive Federal funds due to closures impacting Native
            students;
      --Provide $5 million for Title VI, Part A, Subpart 3, Every Student
            Succeeds Act (ESSA) (Language Immersion Grants)
                department of health and human services requests
      --Ensure Tribes Have Equal Access to Resources and Programs to
            Prevent and Mitigate COVID-19
      --Increased Funding for Head Start to Include Indian Head Start
      --Increase Funding to Social Services in Indian Country Through
            Health and Human Services
        --Restore $281 million to Child Welfare Services Program (Pre-
                sequestration level)
        --Increase to $38 million--Child Abuse Discretionary Activities,
                Innovation Evidence-Based Community Prevention Program.
        --Increase to $70 million--Promoting Safe and Stable Families.
        --Increase funding to the Substance Abuse and Mental Health
                Services Administration--Children and Family Programs
                (includes Circles of Care)
        --Increase to $50 million--Tribal Behavioral Health Program
      --Increase Funding for Part A, Grants for Indian Programs and Part B,
            Grants for Native Hawaiian Programs. Increase the Level of
            Funding for Programs like the Title VI Elders Program Food
            Delivery
      --Restore the President's Proposed Elimination of the Low-Income Home
            Energy Assistance Program, Community Services Block Grants, and
            Preschool Development Grants.
        The Sac and Fox Nation currently has an enrollment of over 4,000
    people, with a jurisdictional area covering all or parts of Payne,
    Pottawatomie and Lincoln counties in Oklahoma. We are a Self-Governance
    Tribe in both the Department of the Interior and the Department of
    Health and Human Services. The Sac and Fox Nation is home of Jim
    Thorpe, one of the most versatile athletes of modern sports who earned
    Olympic gold medals for the 1912 pentathlon and decathlon.
                        department of education requests
        Child Care Providers, Schools and Institutions of Higher Education
    should receive COVID-19 Federal funds due to closures impacting Native
    Students: Public schools continue to close across the country,
    disproportionately impacting Native students who live in rural and
    remote areas, and those who live on or near Tribal lands; 42 states
    have closed schools statewide and according to the National Center for
    Education Statistics, 37 percent of Native students do not have access
    to Internet in the home compared to 12 percent of their white peers and
    the 14 percent nationwide average.
        Provide $5 million for Title VI, Part A, Subpart 3, ESSA (Language
    Immersion Grants): The Ester Martinez Native American Languages
    Programs Reauthorization Act was enacted on December 20, 2019 and
    Congress must build on its bicameral work and continue to advance
    language immersion. The Sac and Fox Nation supports funding for this
    critical program above and beyond the 20 percent set aside through
    National Activities. The ESSA promotes co-existence of Immersion
    Schools through Section 6133, which recognizes the unique educational
    and culturally related academic needs of Native children.
                department of health and human services requests
        Ensure Tribes Have Equal Access to Resources and Programs to
    Prevent and Mitigate the COVID-19 Virus: Tribes must be provided
    adequate access to the resources and programs described herein and set
    forth in Public Law 116-123, the Coronavirus Preparedness and Response
    Supplemental Appropriations Act.
        Increased Funding for Head Start with Funding Parity for Indian
    Head Start: Head Start has been and continues to play an instrumental
    role in Native education by providing early education to over 24,000
    Native children. This vital program combines education, health, and
    family services to model traditional Native education, which accounts
    for its success rate. Current funding dollars provide less for Native
    populations as inflation and fiscal constraints increase, even though
    research shows that there is a return of at least $7 for every single
    dollar invested in Head Start. Congress should increase funds to Head
    Start and Early Head Start with funding parity to ensure that Indian
    Head Start can reach more Tribal communities and help more Native
    recipients by activating the Indian special expansion funding
    provisions.
        Increase Funding to Social Services in Indian Country Through
    Health and Human Services: Our children are a critical resource that we
    must protect and the great work that is done by the Administration for
    Children and Families and all the Indian Child Welfare departments
    across the Nation should be fully funded. These programs are in dire
    need of funding to ensure that they are running at the best capacity
    and efficiency possible. Protecting our Native youth is paramount in
    our eyes. We strongly encourage you to consider this increase and to
    help us fight to make sure that critical services are reaching those
    who are most in need. In fiscal year 2021, we recommend:
      --Restore $281 million to Child Welfare Services Program (Pre-
            sequestration level). Tribes need to have access to increased
            flexible Child Welfare Services Program funds for their child
            welfare programs. Studies show that culturally tailored
            programs, resources and case management result in better
            outcomes for American Indian and Alaska Native (AI/AN) children
            and families involved in the child welfare system.
      --Increase to $38 million--Child Abuse Discretionary Activities,
            Innovation Evidence-Based Community Prevention Program. Tribes
            are now eligible for these funds through a competitive grant
            process. An accurate understanding of successful child abuse
            and neglect interventions for AI/AN families allows child abuse
            prevention programs to target the correct issues, provide the
            most effective services and allocate resources wisely.
      --Increase to $70 million--Promoting Safe and Stable Families. The
            Nation requests the discretionary funding portion of the Social
            Security Act, Title IV-B, Subpart 2 be increased to $70 million
            in order to provide ad currently not eligible to apply based on
            the funding formula.
      --Increase $8 Million to the Substance Abuse and Mental Health
            Services Administration--Children and Family Programs (includes
            Circles of Care). Increase the overall budget category funding
            to $8 million and ensure that $6.5 million is reserved for the
            Tribal community Circles of Care program.
      --Increase to $50 million--Tribal Behavioral Health Program. AI/AN
            youth are more likely than other youth to have an alcohol or
            substance abuse disorder. There is growing evidence that Native
            youth who are culturally and spiritually engaged are more
            resilient than their peers. These funds must be used for
            effective and promising strategies to combat substance abuse
            and suicide and promote the mental health of our youth.
        Increase Funding for Part A, Grants for Indian Programs and Part B,
    Grants for Native Hawaiian Programs: Increase the Level of Funding for
    Programs like the Title VI Elders Program Food Delivery. At the Sac and
    Fox Nation, just as throughout Indian Country, we are seeing a great
    increase in the number of elders who need help getting meals. We
    request an increase in funding for this program and implementation with
    more flexibility. With an increase in funding, more meal centers could
    be opened to provide for the care of our growing population of elders.
    This is no small issue to us.
        Restore the President's Proposed Elimination of the Low-Income Home
    Energy Assistance Program, Community Services Block Grants, and
    Preschool Development Grants.

        [This statement was submitted by Justin F. Wood, Principal Chief,
    Sac and Fox Nation.]
                                     ______

                   Prepared Statement of the Safer Foundation
        My name is Victor Dickson and I am submitting testimony on behalf
    of the Safer Foundation. For almost 50 years, Safer has provided a
    comprehensive continuum of workforce development and reentry services
    for individuals with arrest and conviction records seeking employment.
    There is dignity in work, and Safer Foundation believes that
    individuals who have made mistakes in the past should have the
    opportunity to be self-sufficient and contribute to their families and
    communities through gainful, living wage employment. Clients come to
    Safer because they want and need to work. Safer Foundation helps
    clients discover career paths that provide personal fulfillment while
    allowing them to earn a living. A critical Federal program that
    supports these efforts is the Reintegration of Ex-Offenders (RExO)
    program within the Employment & Training Administration of the U.S.
    Department of Labor. I thank the Subcommittee for providing RExO with
    $98 million in fiscal year 2020. Given the skills gap and need to train
    individuals in jobs our economy requires--such as healthcare workers,
    technology, and logistics--and to help employers identify the qualified
    workers they need, I request $105 million for the RExO program in
    fiscal year 2021. Additionally, given the dramatic economic downturn
    and the fact that states and localities nationwide are releasing people
    from incarceration to address COVID-19, I urge Congress to allocate
    $350 million for the RExO program in the next COVID-19 response bill.
    This funding would support community-based organizations and nonprofit
    providers in addressing the significant increase in need for reentry
    and workforce development services. Expanding services now would enable
    organizations and providers to serve those who are reentering earlier
    than expected or who have records and are facing unexpected job loss,
    as well as adjust services and training to better meet the needs of
    existent and emerging employers in the evolving economy.
    The COVID-19 Pandemic's Impact on the Employment of Individuals with
            Criminal Records
        1 in 3 adults in the U.S. has a criminal record that interferes
    with their ability to find a job.\1\ The unemployment rate for formerly
    incarcerated individuals nationwide could be as high as 47 percent
    after the COVID-19 pandemic (based on unemployment data for this
    population from the last recession and current unemployment data and
    trends). The RExO program supports the collaboration of workforce
    development providers and businesses in training and credentialing
    individuals with criminal records for career path employment that meets
    the current needs of local and regional employers. Congress should
    proactively improve employment outcomes of individuals with records
    during this dramatic economic downturn by strengthening and expanding
    the RExO program.
    ---------------------------------------------------------------------------
        \1\ ``Research Supports Fair-Chance Policies'' (March 2016),
    National Employment Law Project, footnote 1 on p. 7. Available at
    http://www.nelp.org/publication/researchsupports-fair-chance-policies.
    ---------------------------------------------------------------------------
        To immediately meet these needs, Congress should provide
    supplemental RExO program funding in the next COVID-19 relief bill.
    $350 million for RExO would support reentry, education, and workforce
    development services for approximately 25,000-30,000 individuals (10.5-
    12.75 percent of formerly incarcerated individuals estimated to be
    unemployed after the pandemic), and this funding should support reentry
    and workforce development services, including wage replacement funding,
    training stipends, and earn and learn strategies and internships.
        Additionally, this funding would provide Safer Foundation and other
    organizations with critical resources to help train and certify
    healthcare providers who are greatly needed as the country grapples
    with the pandemic. Safer Foundation created a program called the Safer
    Demand Skill Collaborative (SDSC)--an employer-driven initiative of
    public and private partners that work together to train and credential
    skilled workers across five industries, including healthcare. SDSC
    builds on Safer Foundation's successful workforce development
    programming by adding vocational training in high-growth sectors that
    leads to industry-recognized credentials. SDSC provides career pathways
    within the healthcare sector for the jobs of certified nursing
    assistant, certified medical assistant, and registered nurses. In
    fiscal year 2017-2019, Safer Foundation successfully placed 158
    individuals who faced barriers to a healthcare career because of their
    criminal record in critical frontline healthcare jobs with an average
    employee retention rate of 92 percent. With additional RExO program
    resources, organizations such as Safer Foundation would be able to help
    train and certify a portion of the healthcare workforce required to
    respond to COVID-19 and other pressing industry challenges, such as
    long-standing workforce shortages.
        A substantial investment in the workforce system now must emphasize
    subsidized employment and ``earn-as-you-learn'' models such as
    transitional jobs that target those with barriers to employment such as
    criminal records. Time-limited, wage-paying jobs that combine real
    work, skills development, and supportive services help participants
    transition successfully into the labor market. Transitional jobs are an
    effective model for individuals impacted by the justice system and
    support employers to meet the demands of the workforce. RExO funding
    should support this model in this specific economic environment.
    Employment Reduces Recidivism and Improve Reentry Outcomes
        Research shows that sustained, living wage employment and life
    skills are critical components to long-term reentry success. One study
    found that individuals who were employed and earning higher wages after
    release were less likely to return to prison within the first year.\2\
    Unfortunately, finding this type of employment can be prohibitively
    difficult for Americans who have any history of justice system
    involvement. The RExO program helps individuals overcome employment
    barriers by preparing participants for jobs in local high-demand
    industries through career pathways and industry-recognized credentials.
    ---------------------------------------------------------------------------
        \2\ Visher, C., Debus, S., & Yahner, J. Employment After Prison: A
    Longitudinal Study of Releasees in Three States. Washington, DC: Urban
    Institute (2008).
    ---------------------------------------------------------------------------
        Increasing RExO funding would expand access to comprehensive
    workforce development and reentry services that assist individuals with
    criminal records in navigating obstacles to employment while improving
    employment and reentry outcomes. Authorized by section 169 of Workforce
    Innovation and Opportunity Act (WIOA), the RExO program provides
    workforce preparation services for both adults and young people. RExO
    includes a $25 million set-aside to provide services to prepare
    formerly incarcerated young adults for employment, including those who
    have not completed school or other educational programs. Research has
    found that incarceration reduces the average formerly incarcerated
    individual's earning potential by more than 27 percent over a
    lifetime,\3\ making workforce development services for young people
    essential for their long-term employment and reentry success. In light
    of the costs of the criminal justice system at the state, local, and
    Federal levels, the RExO program is crucial to incubating community-
    based models of successful reentry through employment.
    ---------------------------------------------------------------------------
        \3\ Holwell, P., & Gardner, D. (2014). Workforce centers:
    Successful labor market reentry for justice involved ex-offenders.
    Centennial, CO: Arapahoe/Douglas Works, p. 2: http://www.adworks.org/
    pdf/Supporting_Successful_LM_Reentry_for_Justice_Involved.pdf.
    ---------------------------------------------------------------------------
    Safer's RExO Services Increase Employment by Working with Employers and
            Employees
        Safer Foundation offers a full spectrum of workforce development
    and reentry services that train individuals, address their reentry
    obstacles and needs, and help them obtain sustained employment. This
    holistic approach has rendered outstanding results for participants and
    employers. In 2006, decades of experience and success led Safer to
    become one of the original RExO grantees.
        In addition to working with reentering individuals and their
    communities, Safer also works closely with employers to identify what
    types of trained employees they need. In November 2019, the National
    Federation of Independent Business (NFIB) reported that 53 percent of
    businesses overall (and 88 percent of those hiring or trying to hire)
    reported few or no ``qualified'' applicants for the positions they were
    trying to fill. 67 percent of construction firms reported few or no
    qualified applicants. Safer can be responsive to employer needs by
    tailoring its programs to develop skilled workers for specific
    employment sectors and has partnered with hundreds of employers to meet
    their workforce needs.
        Safer's Training to Work (T2W) program, that was funded by a RExO
    grant, improved long-term employment prospects for clients at Safer's
    Adult Transition Centers (ATC). Program participants received case
    management, education, and training that lead to industry-recognized
    credentials for in-demand employment, such as forklift operation,
    foodservice and sanitation, welding, computer numerically control
    (CNC), CDL training, and Microsoft technologies. Given the program's
    strong employer and credentialing components, RExO is uniquely
    positioned to assist local organizations in developing and providing
    services that meet the needs of both the local business community and
    reentering individuals. Increased RExO funding in the next COVID-19
    response bill and in fiscal year 2021 appropriations, including the
    funding of earn and learn apprenticeship opportunities for in demand
    skills development, would allow these efforts to expand, and could help
    match more employers with qualified employees who are trained,
    talented, motivated to work.
    Safer's RExO Grant Produced Outstanding Employment Outcomes and Reduced
            Recidivism
        Safer's RExO grant for the Training to Work (T2W) program
    significantly outperformed employment targets and dramatically reduced
    recidivism. For the first cohort of RExO T2W participants, 69 percent
    of participants obtained employment--15 percent higher than the grant's
    employment target. Given the success of this first cohort of
    participants, T2W was extended to a second cohort who did even better
    with an employment rate of 78 percent--30 percent higher than the
    grant's target. Safer's RExO T2W grant also reduced recidivism rates
    beyond original targets. A 2014 report published by the Bureau of
    Justice Statistics, which studied recidivism across 30 states for 5
    years, determined that the recidivism rate 1 year after release from
    prison was 43.4 percent.\4\ T2W's first participant cohort had an 11
    percent recidivism rate, and its second participant cohort had a 9
    percent recidivism rate--respectively 75 percent and 80 percent lower
    than the national recidivism rate.
    ---------------------------------------------------------------------------
        \4\ Durose, Matthew R., Alexia D. Cooper, and Howard N. Snyder,
    Recidivism of Prisoners Released in 30 States in 2005: Patterns from
    2005 to 2010 (pdf, 31 pages), Bureau of Justice Statistics Special
    Report, April 2014, NCJ 244205.
    ---------------------------------------------------------------------------
        Program evaluation has shown that such successful outcomes are
    related to the comprehensive service model that grantees such as Safer
    provide. Effective, comprehensive services can include interventions
    such as relationship building between staff and participants,
    employment verification, trauma informed training, life skills
    training, employment preparation, mentoring, intensive case management,
    strong training provider relationships and support, family involvement,
    and post-release follow-up and support. These comprehensive services
    are cost-effective--a 2016 Illinois study found that for every $1
    invested in community-based employment and training programs, tax
    payers saw a net benefit of $20.26, and found that employment and
    training programs had the highest cost-benefit ratio for reducing
    recidivism.\5\ Another study found that individuals who were employed
    and earning higher wages after release were less likely to return to
    prison within the first year.\6\ By increasing and improving employment
    outcomes, the RExO program invests in formerly incarcerated individuals
    and their families, while improving public safety.
    ---------------------------------------------------------------------------
        \5\ Illinois Sentencing Policy Advisory Council (2016). A Cost-
    Benefit Tool for Illinois Criminal Justice Policymakers, pp. 2-3:
    http://www.icjia.state.il.us/spac/pdf/Illinois_Results_First_
    Consumer_Reports_072016.pdf, pp. 2-3.
        \6\ Visher, C., Debus, S., & Yahner, J. (2008). Employment After
    Prison: A Longitudinal Study of Releasees in Three States. Washington,
    DC: Urban Institute.
    ---------------------------------------------------------------------------
    Conclusion
        By making effective workforce development and reentry services a
    priority, we fulfill labor market demands, contribute to the economy,
    and build strong and safe communities. Given the skills gap and
    workforce shortages that persist in industries such as healthcare, the
    significant return on investment related to reduced incarceration costs
    and reduced crime costs borne by victims, families, and communities, I
    urge Congress to allocate $350 million to the RExO program in its next
    COVDI-19 response bill as well as $105 million to the RExO program in
    fiscal year 2021. Thank you so much for your time and consideration of
    this important program. If you have questions or need additional
    information, please feel free to contact me at
    victor.dickson@saferfoundation.org or Jenny Collier at
    jcollier@colliercollective.org.

        [This statement was submitted by Victor Dickson, President and CEO,
    Safer Foundation.]
                                     ______

    Prepared Statement of the Schizophrenia and Related Disorders Alliance
                                   of America
        The Schizophrenia and Related Disorders Alliance of America
    appreciates the opportunity to provide written testimony on the
    National Institute of Health fiscal year 2021 budget appropriations.
        The Schizophrenia and Related Disorders Alliance of America is a
    national nonprofit dedicated exclusively to Improving and saving lives
    affected by serious neuropsychiatric brain (mental) illnesses such as
    schizophrenia and bipolar disorder. Our organization promotes laws,
    policies and practices for the delivery of psychiatric care and
    supports the development of treatments for and research into factors of
    serious neuropsychiatric brain illnesses that have the potential for
    reducing suffering, saving and improving lives of individuals living
    with these illnesses.
        The National Institute of Mental Health (NIMH) is the main Federal
    Government agency for research into mental illness. The NIMH was
    authorized through the passage of the National Mental Health Act in
    1946 to better help individuals with mental health disorders through
    better diagnosis and treatments. With a budget of almost $2 billion in
    2020, the NIMH conducts research and funds outside investigators to
    better understand mental illness and develop new treatments to reduce
    the burden these disorders have on individuals.
        Unfortunately, the NIMH has a recent history of diminishing the
    work to impact those with the most severe mental illnesses. According
    to Dr. E. Fuller Torrey in Psychiatric Times earlier this month:

        ``Congress awarded the National Institute of Mental Health an
            additional $98 million as part of the National Institutes of
            Health budget resolution in December 2019, which brings the
            NIMH budget to just under $2 billion and represents a 35
            percent increase since 2015, one of the largest increases in
            the history of the NIMH. Yet, during the 5 years from 2015
            through 2019, NIMH funded a total of 2 new drug treatment
            trials for schizophrenia and bipolar disorder, according to
            clinicaltrials.gov. This contrasts with the 5-year period from
            2006 through 2010 when NIMH funded 48 such trials. NIMH has
            thus almost entirely given up its role of evaluating drugs for
            the treatment of 2 disorders (emphasis added).''

        In December 2019, the NIMH released a draft of their five-year
    strategic plan for public comment. They reported receiving more than
    6,000 responses over the winter holidays, including from our
    organization identifying concrete examples of research initiatives the
    NIMH could be pursuing today to help people with serious mental illness
    recover and live better lives. Despite this robust response, NIMH made
    no substantive changes to the research goals or objectives in the final
    version released to the public earlier this week.
        The NIMH research goals for 2020-2025 increase the existing
    imbalance in NIMH research. In doing so, they offer little hope for new
    or better treatments for individuals who are currently afflicted with a
    a serious mental illness.
        Schizophrenia and Related Disorders Alliance of America recognizes
    the profound importance of discovering the etiology of the syndromes to
    allow for precise targeted treatments, however, that will not provide
    for individuals currently suffering and dying. It is vitally important
    for NIMH to study what the pharmaceutical industry will not, that is
    what can be developed in the very short term to help individuals
    seriously ill now.
        The pharmaceutical industry will not compare a ``gold standard''
    medication, clozapine, to new medications or study the elements of
    clozapine that currently provide the most effective outcomes for people
    affected by psychosis thus improving life success and reducing suicide.
    Refine even further what is reasonable as well as safe Risk Evaluation
    and Mitigation Strategy (REMS) for clozapine to increase the use and
    accessibility of the currently most effective medication. NIMH must
    prioritize research and discover what will relieve the suffering of
    people currently seriously ill.
        Future NIMH funding must be used to correct the existing imbalance,
    not worsen it, especially now that the COVID-19 pandemic has distressed
    the mental health treatment system and has resulted in an exacerbation
    of symptoms in people currently affected and will cause an increase in
    serious mental illnesses among Americans. Those with the most severe
    forms of neuropsychiatric brain (mental) illness deserve to be
    prioritized.
        Thank you for your consideration of this request.

        Sincerely.

        [This statement was submitted by Linda Stalters, Chief Executive
    Officer,
    Schizophrenia and Related Disorders Alliance of America.]
                                     ______

                Prepared Statement of the Scleroderma Foundation
     the foundation's fiscal year 2021 l-hhs appropriations recommendations
    _______________________________________________________________________

      --$8.3 billion in program level funding for the Centers for Disease
            Control and Prevention (CDC), which includes budget authority,
            the Prevention and Public Health Fund, Public Health and Social
            Services Emergency Fund, and PHS Evaluation transfers.
        --A proportional fiscal year 2019 funding increase for CDC's
                National Center for Chronic Disease Prevention and Health
                Promotion (NCCDPHP).
      --At least $44.7 billion in program funding for the National
            Institutes of Health (NIH).
        --Proportional funding increases for NIH's National Heart, Lung,
                and Blood Institute (NHLBI); National Institute of
                Arthritis and Musculoskeletal and Skin Diseases (NIAMS);
                National Center for Advancing Translational Sciences
                (NCATS).
    _______________________________________________________________________

        Chairman Blunt, Ranking Member Murray and distinguished members of
    the Subcommittee, thank you for your time and your consideration of the
    scleroderma community's priorities while working to craft the fiscal
    year 2021 L-HHS Appropriations Bill.
                               about scleroderma
        Scleroderma is a chronic connective tissue disease affecting
    approximately 300,000 Americans. The word scleroderma means hardening
    of the skin, which is one of the most visible manifestations of the
    condition. The cause of this progressive and potentially fatal disease
    remains unknown. There is no cure, and treatment options are limited.
        Symptoms vary greatly and are dependent on which organ systems are
    impacted. Prompt diagnosis and treatment by a qualified physician may
    improve health outcomes and lessen the chance for irreversible damage.
    Serious complications of the disease can include pain, skin ulcers,
    anemia and pulmonary hypertension.
                              about the foundation
        The Scleroderma Foundation is dedicated to the concerns of people
    whose lives have been impacted by the autoimmune disease scleroderma,
    also known as systemic sclerosis, and related conditions. The
    foundation's mission is to 1) support individuals affected, 2) promote
    education and public awareness, and 3) advance critical research and
    improve scientific understanding to improve treatment options and find
    the causes and a cure. The foundation has a research program that funds
    basic, translational and clinical research through a peer review
    process to find the cause and cure for scleroderma and related
    conditions.
                   centers for disease control and prevention
        Early recognition and an accurate diagnosis of scleroderma can
    improve health outcomes and save lives. CDC in general and the NCCDPHP
    specifically have programs to improve public awareness of scleroderma
    and other rare, life-threatening conditions. Please increase funding
    for CDC and NCCDPHP so that the agency can invest in additional,
    critical education and awareness activities that have the potential to
    improve health and save lives. The Foundation supports the
    establishment of a Chronic Disease Education and Awareness Program,
    this program seeks to provide collaborative opportunities for chronic
    disease communities that lack dedicated funding from ongoing CDC
    activities. Such a mechanism allows public health experts at the CDC to
    review project proposals on an annual basis and direct resources to
    high impact efforts in a flexible fashion.
                         national institutes of health
        NIH continues to work with the Foundation to lead the effort to
    enhance our scientific understanding of the mechanisms of scleroderma
    with the shared-goal of improving diagnosis and treatment, and
    ultimately finding a cure. Since scleroderma is a systemic fibrotic
    disease it is inexorably linked to other manifestations of fibrosis
    such as cirrhosis, pulmonary fibrosis, and the fibrotic damage
    resulting from heart attack. Scleroderma is a prototypical
    manifestation of fibrosis as it impacts multiple organ systems. In this
    way, it is important to promote cross-cutting research across such
    Institutes as NIAMS and NHLBI.
        Please provide NIH with a significant funding increase to the
    scleroderma research portfolio can continue to expand and facilitate
    key breakthroughs.
      --NIH continues to support the Trans-NIH Working Group on Fibrosis
            which is working to promote cross-cutting research across
            Institutes.
      --NHLBI, which is leading Scleroderma Lung Study II, is comparing the
            effectiveness of two drugs in treating pulmonary fibrosis in
            scleroderma.
      --NIAMS, is leading efforts to discover whether three gene expression
            signatures in skin can serve as accurate biomarkers predicting
            scleroderma, and investigations into progression and response
            to treatment to clarify the complex interactions of T cells and
            interleukin-31 (IL-31) in producing inflammation and fibrosis,
            or scarring in scleroderma.
    Patient Perspective
        My constantly aching hands begged for mercy of just one day without
    pain. My joints started to feel like they were being torn away from my
    body. Anytime I touched something cold, my hands would tingle and burn.
    Painful sores started appearing on my knuckles. You stole my skin color
    and with that went my confidence. It was like I was turning into a
    mummy as my skin tightened with collagen, day by day. I was beginning
    to need help performing small tasks. Opening a water bottle or turning
    a key in the door started to become difficult. Standing for long
    periods of time made my hips radiate with pain. In 2012 I had to stop
    working, at 24 years old. The definition of normal as I knew it was
    being torn down and built into something completely new. And so was my
    soul.
        I now need help with everything! Getting dressed, washing my hair,
    cleaning, doing laundry; pretty much anything I have to use my hands
    for. You stole my independence. I had to learn to swallow my pride and
    ask for help. It's a tough thing to do, especially when you're at an
    age that's supposed to be your prime. Friends and family around me have
    blossomed into caregivers and helping me has become second nature to
    them. It's a beautiful thing when those surrounding you automatically
    adapt to your disability. Support is the lifeboat that keeps me
    afloat.''

        --Excerpt from ``My Letter to Scleroderma''
        Jessica Messingale
        Coconut Creek, Florida

        [This statement was submitted by Mr. Robert J. Riggs, Chief
    Executive Officer, Scleroderma Foundation.]

                                     ______

                   Prepared Statement of Scott Cynthia  deg.
                      Prepared Statement of Cynthia Scott
        Here's how I have lived my life. Standing on a cliff, with my arms
    opened wide, trying to keep my loved ones from running off. I was born
    into a bipolar family. Bipolar disorder is not listed as the official
    cause of death for any of them, but this brain disease is picking off
    my family one by one. They drink and drug themselves to death in an
    attempt to poison the beast. They end up poisoning themselves and
    shattering their own lives in the process. I have spent my life trying
    to keep alive brilliant people gripped by madness. It's been an abject
    failure. Bodies keep hitting the floor one by one. This is a genetic,
    biological condition. They are born with bipolar, and it lives in their
    brain like a terrorist cell waiting to activate. It is a complex
    condition, and the triggers that activate it are complex and unique to
    the individual sufferer.
        Why do they suffer? They are trapped in a hell mind. They hate
    themselves, because they can't find their way out. They project this
    self-loathing onto their safe people. My son, who is in and out of
    recovery and now back in, originally began his drug abuse to self-
    medicate his bipolar condition. Years after his first taste of a
    prescribed opioid, he told me, ``It was the first time in my life that
    my brain felt calm.'' With that first taste, he fell down the dark
    rabbit hole. He tells me he did the drugs, because, ``I just wanted to
    make my brain feel normal.''
        Love is not enough in the face of such suffering. I recently
    participated in a webinar for family members with addicted loved ones.
    The presenter offered this beautiful closing that left me weeping: ``We
    don't believe in brokenness. We believe in forgetfulness, and we must
    remind them of who they are.'' It caused me to reflect on why we hang
    in there. We call them up, and we call them out, because we know they
    are still in there, but they are lost. Because we love them, and
    because we are brave and have big hearts, we are helping them find
    their way back home.
        It is really since I sent my son to his first rehab more than 2
    years ago that I started to open up about having a family afflicted by
    mental illness. Until then, I held that close to my chest, as an ache
    in my heart, as my secret sorrow. Mental illness is an
    intergenerational trauma for our family. Of all the grandchildren in my
    family of origin, only one is mentally healthy. The rest have bipolar
    disorder. All are brilliant and talented beyond belief. And all are
    cursed.
        I feel raw with emotion right now writing this letter, because I
    just emerged from a harrowing five days, where I mounted a rescue
    operation from 1400 miles away to pull my son back from the edge of
    hell again. I would have caught the first plane to Costa Rica to find
    him if I could have, but the borders are closed. As I feared, the
    quarantine had destabilized him, and he disappeared for several days.
    When he resurfaced incoherent, I was able to pull enough details from
    him to send people to find him. For now, he is safe in recovery in
    Costa Rica. For how long? I don't know. The tragedy of loving someone
    with bipolar disorder is knowing your love is not strong enough to
    spare them and that their suffering does not truly end until the grave.
    Only a warrior can live with it for long.
        Why is my son recovering 1400 miles away in Costa Rica? Because we
    could not afford long-term care for him in America, and I sent him down
    there initially for rehab. He is now on his fifth round of rehab there,
    because each time he has ever gone into rehab in America or abroad,
    they inadequately target the problem. The why behind his addiction. His
    bipolar disorder. Co-existing conditions like bipolar disorder and
    other serious mental illnesses are driving our problem with drug
    addiction. Before COVID-19 hit, drug addiction was the plague
    threatening to take our economy down. Currently, America has the
    highest rate of drug overdose deaths in the world. We also lead the
    world in having the highest percentage of our citizens incarcerated.
    For many of our mentally ill citizens, they do not receive adequate
    mental health treatment until they go to prison. Currently, our prison
    system is considered the largest mental health provider in the country.
    We should hang our heads in shame for this as a nation.
        People suffering with substance use disorders end up on an insane
    merry-go-round of rehab and relapse. Why do so many relapse as soon as
    they leave rehab? For one, in most cases, insurance will only pay for
    30 days, and this is laughable. There is no research to support this
    arbitrary number. Most rehabs offer inadequate treatment, because under
    our current backwards model, they try to cure them with a quasi-
    religious philosophy called The Twelve Steps. While this program has
    its benefits, it is not a medical cure for a medical problem. What
    addicts with co-existing conditions like bipolar disorder need are
    medicines that don't make them want to die. They often refuse to stay
    on the meds beyond initial stabilization because of their horrid side
    effects. My son says the meds numb him emotionally, make him feel like
    a zombie. They make him feel like he is living a miserable half-life as
    a human. If he cannot live fully and embrace the full range of his
    emotions, then why live at all? This is how he feels. For a bipolar
    person, their full range of emotions is dangerous and carries them away
    into the streets, prison, insanity or an early grave. The loss to our
    society is incalculable. The people afflicted with bipolar disorder are
    often brilliant. Bipolar disorder is referred to as the ``artist's
    disease,'' because the sufferers are often highly creative. Those
    afflicted with this condition have made some of the greatest
    contributions to humanity. But they did so at the cost of intolerable
    psychological pain.
        It is difficult to impossible to get many bipolar people to commit
    to care. They get stuck in a self-destructive cycle. Of all the brain
    illnesses, bipolar is the one that demands medication to survive. There
    is no ``natural cure'' for bipolar disorder. Sure, alternative and
    integrative therapies can help and be wonderful, but my son, for
    example, is not going to talk his way out of it, surf his way out of
    it, forest bathe his way out of it, pray his way out of it, think his
    way out of it, will his way out of it, or weight lift his way out of
    it. All of those things can and do help reduce the suffering but not to
    the point to keep the madness in check. Not. Even. Close. My son will
    continue to live like a homeless man even when he has a home if he does
    not get on proper meds that he can tolerate, and his life will continue
    along this wasted, tragic trajectory before it ends too soon.
        Nobody hates Big Pharma more than I do. Because of their
    irresponsibility and greed, they have killed millions and almost took
    my son down, too. They go unpunished. I consider the Sackler family,
    who unleashed the opioid epidemic on America, to be mass murderers.
    They should all be arrested and carted off to prison where they rot
    forever. But no. Not how it works. They're now the world's most
    successful living drug dealers enjoying the high life with their blood-
    money billions, while my son's in Costa Rica trying not to die. His
    drug addiction began with a legal prescription for opioids at a time
    when doctors-aligned with Purdue Pharma marketing-claimed addiction to
    opioids was rare and prescribed these deadly drugs like Skittles.
        Having said that, my son needs pharmaceuticals to live. Bipolar
    meds are not pretty. No one takes an anti-psychotic and shouts, ``Good
    times!'' Anyone who takes these meds without a dose of wisdom fear is a
    fool. This is a pick your poison scenario. On the one hand, they can
    choose barely tolerable meds with potentially horrendous side effects
    that can keep them alive but will probably destroy their kidneys in the
    process OR refuse treatment and live a tragic wasted life only to face
    an early death. It's a double-edged sword. This is a brutal choice and
    requires courage. Why do our mentally ill citizens, already enduring so
    much suffering, have to endure even more as guinea pigs while doctors
    spend months and years trying to find the right combination of meds
    that will help make their lives worth living? We can do better. We can
    be a nation that cares for the mentally ill instead of marginalizing
    them.
        Bipolar disorder is a bleak condition I would not wish on my worst
    enemy if I had one. For untreated bipolar people, their bottom is
    death. When my untreated bipolar sister ran her car off the road,
    across a field, and crashed it into a building in a suicide attempt,
    that was not her bottom. She survived it but persisted in self-
    destruction, including her refusal to be properly medicated. She
    finally drank herself to death to stop the pain. Her son would do the
    same three short years later. He refused medication, too. These were
    not stupid people. Both had genius level IQs. High intelligence does
    not protect against the bipolar beast unless it is trained to target
    the beast. Their tragic fate is the same fate grinning back at my own
    son if he does not surrender to proper treatment, however inadequate.
    Even when bipolar people accept treatment, for many it is only
    temporary. Once they start feeling good, they ditch their meds, because
    they think they're cured (which is delusional) or because of the side
    effects. This brain disease is one unforgiving hellhound. Only a
    warrior will survive it.
        We are still in the Dark Ages in our understanding of this brain
    disorder. Currently, we only know about 10 percent of what we can know
    about it, so we only have a primitive understanding. What leading
    experts and researchers do say is that this is not a psychiatric
    illness, but a medical one. It is not about character but about
    chemicals. This makes sense to me, because when my son is properly
    medicated, he is a different person--rational, sane, steady,
    thoughtful. Off his meds, he is a tornado impossible to lasso. The
    switch is that fast. Before the discovery of insulin, people also
    believed diabetes was a mental illness. A person's blood sugar would
    crash, and they would act drunk and irrational. People thought they
    were insane. Since insulin, we now understand that diabetes is a
    medical problem, not a psychiatric one. The problem is that while
    insulin can manage diabetes 100 percent, bipolar meds can only manage
    bipolar illness about 50 percent. The rest has to come from lifestyle
    choices and a continued course of therapeutic treatment. Left
    untreated, their pre-frontal lobe, the seat of their executive
    functioning, remains impaired, so they continue to make irrational
    choices about treatment and their own lives. It's a vicious cycle.
        The majority of sufferers will end up with substance abuse
    disorders in a desperate attempt to normalize their brains. It is
    considered the most dangerous of any psychiatric illness (although it
    is still misunderstood as such), because it carries the highest suicide
    rate. It also carries the highest addiction rate.
        Mental illness can strike any one of us or our loved ones at any
    time. No one is immune. There are no antibodies for mental illness.
    Like so many other families with mentally ill loved ones, I live on the
    ropes, but I don't give up easily. I would be forever grateful for
    caring advocates in Congress to join this battle, too.
        The NIMH now has $2 billion in taxpayer funds to finance this
    fight. Congress can begin by ensuring that NIMH's priority is the
    development of cures and treatments for serious mental illnesses like
    schizophrenia and bipolar. With proper support, there is hope on the
    horizon. According to a recent article in the Psychiatric Times
    entitled ``Riches Abound, So Where Are the Trials for Schizophrenia and
    Bipolar Disorder?'' there are promising findings from small studies
    that show that immune modulatory drugs have potential for the treatment
    of schizophrenia and bipolar disorder. These should be followed up with
    larger scale studies. Also showing promise and deserving of exploration
    are neuro-hormones like estrogen and probiotics and other agents that
    regulate the microbiome and gut-brain axis. Clozapine is the last new
    psychiatric drug approved for psychosis. It was approved 30 years ago.
    Why has progress in the development of psychiatric drugs slowed to such
    a snail's pace even as the numbers of the mentally afflicted continue
    to rise exponentially in our country? It is time for Congress to
    declare a Manhattan Project for the mentally ill.
        So many families display a quiet heroism and ``unyielding love''
    for the mentally ill members of their tribes. It is an impossible,
    Sisyphean ordeal. It is purgatory. The afflicted and their families
    need an assist. They need a hand up out of hell.

                                     ______

                   Prepared Statement of Segal Stephen  deg.
                      Prepared Statement of Stephen Segal
        My name is Stephen Segal and I am a resident of Philadelphia. I am
    writing to encourage you to require NIMH to provide more support for
    trials for medications to treat bipolar disorder and schizophrenia.
        My son has bipolar disorder. He was diagnosed at the age of 19 in
    the 1999 and continues to live with it to this day. At times, his
    journey has been heartbreaking. At other times, he manages well.
        He has had numerous treatments, including ECT, TMS and ketamine
    infusions, and has tried different drugs over the years. He had to
    discontinue lithium, a foundation drug for him, because it was
    endangering his kidneys. For him and the millions who also suffer from
    these severe mental illnesses, the options are not sufficient when a
    medication either doesn't work or stops working or the side effects are
    too onerous to bear.
        I am shocked that NIMH has actually reduced its support of drug
    treatment trials for bipolar disorder and schizophrenia by 96 percent
    since 2006! This is a disgrace. There is way too much suffering by the
    millions of Americans with these illnesses and their families to
    justify such diminished support. In addition, a person who is ill and
    not successfully treated is both a threat to society and a drain on
    society. People with untreated severe mental illness fill our jails and
    emergency rooms. They comprise a large number of the homeless
    population and they are more likely to be both victims of violent crime
    and perpetuators of violent crime. They also account for many of our
    nation's suicides. We all lose when someone is untreated or not treated
    successfully.
        However, when treated successfully as many are, they can be
    productive and positive member of society. For those with bipolar
    illness who are treated well, they are indistinct from anyone else.
        Please use your influence to require more spending on drug trials
    for bipolar disorder and schizophrenia. You will be saving lives and
    families. Thank you.
                                     ______

                Prepared Statement of the Sleep Research Society
                fiscal year 2021 appropriations recommendations
    _______________________________________________________________________

      --SRS joins the broader medical research community in thanking
            Congress for providing a $2.6 billion funding increase for the
            National Institute of Health (NIH) for fiscal year 2020 and in
            requesting a subsequent increase of at least $3 billion for
            fiscal year 2021 to bring total agency funding up to a minimum
            of $44.7 billion annually.
        --Please provide proportional funding increases for all NIH
                Institutes and Centers, including in particular the
                National Heart, Lung, and Blood Institute (NHLBI), which
                houses the National Center on Sleep Disorders Research
                (NCSDR), and the National Institute of Neurological
                Disorders and Stroke (NINDS). Sleep impacts nearly every
                body system and the progress of many illnesses. As a
                result, nearly every NIH Institute and Center conducts
                sleep research, and NCSDR helps coordinate sleep research
                activities across (and not just across NIH, but across the
                Federal Government, including the Department of Defense and
                the Veterans Administration).
      --SRS joins the broader public health community in thanking Congress
            for providing the Centers for Disease Control and Prevention
            (CDC) with a modest funding increase for fiscal year 2020 and
            in requesting a subsequent increase of at least $600 million in
            discretionary resources for fiscal year 2021 to bring total
            agency funding up to a minimum of $8.3 billion annually.
        --Please also provide a dedicated, line-item appropriation of at
                least $5 million to for a ``Chronic Disease Education and
                Awareness Program'' at CDC (as proposed in the fiscal year
                2020 House LHHS Appropriations Bill).
    _______________________________________________________________________

        Chairman Blunt, Ranking Member Murray, and distinguished members of
    the Subcommittee, thank you for considering the views of the sleep,
    circadian, and sleep disorders advocacy community as you work on fiscal
    year 2021 appropriations for relevant medical research and public
    health programs. We would like to take this opportunity to thank you
    for providing meaningful investment in fiscal year 2020 for NIH and CDC
    and to request that this investment continue in fiscal year 2021
    considering recent progress and emerging opportunities.
                        about the sleep research society
        The Sleep Research Society (SRS) was established in 1961 by a group
    of scientists who shared a common goal to foster scientific
    investigations on all aspects of sleep, circadian rhythmicity, and
    sleep disorders. Since that time, SRS has grown into a professional
    society comprising over 1,300 researchers nationwide. From promising
    trainees to accomplished senior level investigators, sleep and
    circadian research has expanded into areas such as psychology,
    neuroanatomy, pharmacology, cardiology, immunology, metabolism,
    genomics, and healthy living. SRS recognizes the importance of
    educating the public about the connection between sleep, circadian
    rhythmicity, and health outcomes. SRS promotes training and education
    in sleep and circadian research, public awareness, and evidence-based
    policy, in addition to hosting forums for the exchange of scientific
    knowledge pertaining to sleep and circadian rhythms.
                              about project sleep
        Project Sleep is a 501(c)(3) non-profit organization raising
    awareness about sleep health and sleep disorders by working with
    affected individuals and families across the country. Believing in the
    value of sleep, Project Sleep aims to improve public health by
    educating individuals and policymakers about the importance of sleep
    health and sleep disorders. Project Sleep will educate and empower
    individuals using events, campaigns, and programs to bring people
    together and talk about sleep as a pillar of health.
                         cdc sleep disorders activities
        For nearly a decade, CDC has supported the National Healthy Sleep
    Awareness Project (NHSAP) with discretionary resources at about
    $250,000 annually. Despite the severity and prevalence of sleep-related
    health issues, NHSAP represented the only public health activity at CDC
    devoted to sleep. This project has been highly successful by leveraging
    voluntary contributions from leading sleep centers and organizations to
    generate numerous research advancements, awareness campaigns,
    professional publications, and peer-reviewed articles.
        Despite the overwhelming support for the NHSAP and the request to
    continue its core functions through key committee recommendations, CDC
    terminated these activities for fiscal year 2019 (effectively halting
    sleep-related public health efforts). The fiscal year 2020 House LHHS
    Appropriations Bill proposed establishing a line item program for
    ``Chronic Disease Education and Awareness''. The sleep community is
    highly supportive of this program and requests that it be included
    again for fiscal year 2021 with an initial investment of $5 million.
    Such action will allow organizations to compete for funding and for the
    CDC to support timely and meritorious public health efforts.
                         nih sleep disorders activities
        Over recent years, NIH has seen a meaningful infusion of essential
    funding. This investment has improved grant funding pay lines, led to
    significant scientific advancements, and helped to prepare the next
    generation of young investigators. Due to the high quality of the
    science, the sleep research portfolio has done well as a result of this
    additional funding. In fact, NIH supported research was critical to the
    circadian research project that received the 2017 Nobel Prize in
    Physiology and Medicine. However, while the sleep portfolio overall is
    strong, one area of potential improvement is investment in individual
    sleep disorders. The research portfolios for specific conditions at
    NIH, including Restless Legs Syndrome, circadian rhythm disorders, and
    Narcolepsy, remain relatively modest. The research done in these
    portfolios has a direct and sometimes immediate impact on patient
    health and wellness.
        Recently, the committee reports accompanying the L-HHS
    appropriations bills have featured timely recommendations that
    emphasize the value and importance of sleep, sleep disorders, and
    circadian research. Moving forward, please continue to recognize the
    progress made by NCSDR and the need to continue to advance this
    research portfolio in a way that capitalizes on emerging opportunities
    for patient benefit. Please also recognize the leadership of NINDS on
    sleep disorders research activities.
                        brittany matthews from illinois
        One February afternoon during Brittany Matthews' senior year of
    high school, she awoke on her bedroom floor to her mom frantically
    screaming at her for skipping school for the 20th time that year.
    Brittany hadn't moved from the spot on the floor where she was doing
    her makeup at 7 am when her mom left for work. However, Brittany was
    confused because just a few minutes before this, she had thought she
    actually was at school and this ``hypnopompic hallucination''
    experience felt just as real as now finding herself still at home. When
    the school informed Brittany's parents that she needed to go to court
    for her truancy issues and was not likely to graduate on time, Brittany
    was sent to live with her dad, who thought he could ``straighten her
    out.'' That was one of the last straws in a sequence of events that
    finally led Brittany to receiving a diagnosis of narcolepsy at age 19,
    which was about 12 years after she began experiencing symptoms at the
    young age of 7. Narcolepsy is a misunderstood and under-diagnosed
    chronic neurological disorder affecting the brain's ability to regulate
    the sleep/wake cycle with a prevalence of 1 in 2,000 people worldwide.
        During the 5 years that followed, Brittany struggled in every
    aspect of her life until eventually finding a more effective treatment
    regimen, which allowed her to re-consider her dream of finishing
    college. Last year, Brittany graduated with her Bachelor of Science
    degree at the age of 26. Now, she is working full-time and is in the
    process of applying for graduate school programs for speech language
    pathology. Despite the progress she has made, Brittany still grapples
    daily with excessive daytime sleepiness, as well as cataplexy (sudden
    muscle weakness brought on by emotions). Advancements in research,
    treatments, and awareness are critical to improve the lives of those
    living with narcolepsy and other sleep disorders.

        [This statement was submitted by Andrew Krystal, MD, MS, President,
    Sleep
    Research Society.]

                                     ______

                    Prepared Statement of Smith Yvonne  deg.
                       Prepared Statement of Yvonne Smith
        Dear Members of the NIMH Senate Committee,
        This letter is to appeal on behalf of vulnerable members of our
    society, those with serious mental illnesses such as Schizophrenia or
    Bi-Polar disease. The population suffering from severe mental illness
    is growing and their needs are acute. NIMH has consistently overlooked
    this population in its efforts to find cures and treatments. This is
    not acceptable.
        So I am asking that you direct a portion of the 2021 budget
    specifically to address the need for research to find cures for serious
    and debilitating mental illness and to mandate that the NIMH pursue a
    robust effort to find cures and effective treatments using the specific
    budget allocated to these efforts.
        Thank you so much for considering my request.
                                     ______

       Prepared Statement of the Society for Healthcare Epidemiology of
      America, the Association for Professionals in Infection Control and
        Epidemiology, and the Society of Infectious Diseases Pharmacists
        The Society for Healthcare Epidemiology of America (SHEA), the
    Association for Professionals in Infection Control and Epidemiology
    (APIC), and the Society of Infectious Diseases Pharmacists (SIDP) urge
    appropriators to prioritize investments in the following Federal
    programs:

    ------------------------------------------------------------------------
                                                                Fiscal Year
                 LHHS Programs                    Agency       2021 Funding
                                                                  Request
    ------------------------------------------------------------------------
    National Healthcare Safety Network.....                CDC   $25 million
    Antibiotic Resistance Solutions                        CDC  $200 million
     Initiative............................
    Advanced Molecular Detection...........                CDC   $57 million
    Data Modernization.....................                CDC  $100 million
    Patient Safety Research................            AHRQ   $100.4 million
    Healthcare-Associated Infections.......            AHRQ    $50.2 million
    Combating Antibiotic-Resistant Bacteria            AHRQ    $13.9 million
    Investigator-initiated Research........            AHRQ    $73.8 million
    Biomedical and Advanced Research and               ASPR     $230 million
     Development Authority.................
    ------------------------------------------------------------------------

        Congress has not appropriated new funding for the above listed
    Federal programs for at least 10 years. These programs are critical for
    preventing healthcare-associated infections (HAIs) and the spread of
    antibiotic resistance (AR). New investments in these programs must be
    prioritized to improve the quality of care delivered to every American
    and to ensure advancements made possible by medical research and
    innovation can be sustained.
        Although dedicated prevention and infection control efforts have
    helped reduce the number of infections and deaths caused by antibiotic
    resistance, the 2019 Antibiotic Resistance Threats in the United States
    report, published by the Centers for Disease Control and Prevention
    (CDC), concludes that we are now in a post-antibiotic era where some
    drugs no longer cure the infections they were designed to treat. In the
    United States, 2.8 million antibiotic-resistant infections occur each
    year resulting in 35,000 deaths. Suboptimal antibiotic use and
    prescribing practices have led to nearly 223,900 C. difficile
    infections, of which at least 12,800 people died in 2017.
        We urge you to invest $25 million in the National Healthcare Safety
    Network (NHSN). Although significant progress has been made in
    preventing some HAIs, about one in 31 hospitalized patients (3.2
    percent) develops at least one HAI. NHSN collects data on antibiotic
    prescribing and the prevalence of HAIs. The NHSN is also continuing its
    efforts to implement the antibiotic use and resistance module in
    hospitals, which would help monitor the use of certain antibiotics and
    the appearance of multidrug-resistant organisms in facilities. This
    funding includes providing technical support to more 65,000 users
    representing about 22,000 healthcare facilities across the continuum of
    care. There have been no new investments in the NHSN for at least 10
    years despite the exponential expansion of its utilization since its
    inception. Increased funding is critical to ensure CDC's continued
    efforts toward eliminating HAIs and optimizing antibiotic prescribing
    practices.
        We urge you to invest $200 million in the Antibiotic Resistance
    Solutions Initiative (ARSI). To combat the post-antibiotic era in which
    we now find ourselves, aggressive strategies must be adopted to make
    meaningful progress against the threat of AR. The ARSI supports 50
    state health departments, six large city health departments, and Puerto
    Rico to detect, respond, and contain antibiotic-resistant pathogens.
    Increasing investments in ARSI would enable them to sustainably expand
    epidemiology, laboratory, and diagnostics capacity. The ARSI also
    includes the Antibiotic Resistance Lab Network which is comprised of
    seven regional labs that monitor and detect organisms that are
    resistant to most or all antibiotics.
        We urge you to invest $57 million in the Advanced Molecular
    Detection (AMD) Initiative. AMD supports collaborative relationships
    between academic research institutions and public health to facilitate
    the development of new tools that detect disease faster, identify
    outbreaks sooner, and protect people from emerging and evolving disease
    threats. It informs vaccine and diagnostics development for new and
    emerging diseases as well as identify and track AR. Right now, AMD
    plays a critical role in the response to the growing global outbreak of
    COVID-19. An increased investment in AMD will empower state and local
    health departments with the ability to quickly develop targeted
    prevention and control strategies during an outbreak caused by emerging
    pathogen.
        We urge you to invest $100 million in Public Health Data and IT
    Modernization. Congress recognized that our nation's public health data
    and infrastructure was dangerously antiquated by appropriating $50
    million in new investments in fiscal year 2020. This new investment
    allows CDC to support state, local, tribal, and territorial health
    departments to begin the process of moving away from sluggish, manual,
    paper-based data collection to seamless, automated IT systems as well
    as recruit and retain skilled data scientists to use them. However in
    order to fully meet the current needs of our nation's public health
    data infrastructure, Congress will need to invest $100 million every
    year for the next 10 years to ensure public health professionals are
    consistently able to get ahead and stay ahead of emerging and urgent
    HAI and AR threats. These sustained investments will also allow
    policymakers to make better decisions informed by the expertise of the
    public health workforce and enabled by strong data and health
    information systems.
        We urge you to invest $100.4 million for the Agency for Healthcare
    Research and Quality's (AHRQ's) patient safety and research portfolio.
    Specifically, we are seeking $50.2 million for research and
    preventative strategies for healthcare-associated infections, $13.9
    million for research and strategies to combat antibiotic resistant
    bacteria, and $73.8 million to support investigator-initiated research
    grants. AHRQ is the only Federal agency that funds research to study
    the most efficient way to deliver healthcare while also improving the
    quality of patient care and outcomes across the healthcare continuum.
    Much of this research is conducted by leading medical investigators at
    academic centers and other institutions of research across the country.
    Congress has prioritized medical research investments for treatment and
    cures over the last several years. While we commend these investments
    in innovation, Congress must also prioritize research in discovering
    the best methods for preventing HAIs and AR to ensure a safe
    environment for delivering treatments and cures. AHRQ also provides
    tools and training to implement research findings for the everyday care
    of patients.
        We urge you to invest $230 million for Broad Spectrum
    Antimicrobials and CARB-X at the Biomedical Advanced Research and
    Development Authority (BARDA). The BARDA Broad Spectrum Antimicrobials
    program and CARB-X, programs within the office of the Assistant
    Secretary for Preparedness and Response (ASPR), have demonstrated that
    successful development of new FDA approved antibiotics is possible.
    Without this investment, modern medical advances that have become
    standard practice, such as chemotherapy and organ transplantation which
    can only be sustained by the availability of antibiotics, may become
    unavailable due to the high risk of infection.
        The importance of investing in preparing for and responding to
    emerging infectious disease threats has been highlighted in the ongoing
    COVID-19 pandemic. The challenges we are facing today with the growing
    prevalence in AR will get worse without new investments. Preventing
    infections, improving antibiotic use, detecting threats, and
    implementing interventions are essential to ensuring public health. The
    societies thank you for this opportunity to submit testimony on behalf
    of clinicians and researchers who champion infection prevention and
    antibiotic resistance.
                                     ______

         Prepared Statement of the Society for Maternal-Fetal Medicine
        On behalf of the Society for Maternal-Fetal Medicine (SMFM), I am
    pleased to submit testimony in support of the important work related to
    women's and infants' health being conducted at the U.S. Department of
    Health and Human Services for fiscal year 2021. SMFM urges Congress to
    ensure that the Centers for Medicare and Medicaid Services (CMS),
    Centers for Disease Control and Prevention (CDC), National Institutes
    of Health (NIH), Health Resources and Services Administration (HRSA)
    and Agency for Healthcare Research and Quality (AHRQ) are adequately
    funded in fiscal year 2021. Specifically, SMFM urges the Committee to
    support a total of $44.7 billion for the NIH, with $1.7 billion of that
    total to fund the Eunice Kennedy Shriver National Institute of Child
    Health and Human Development (NICHD), $8.3 billion for the CDC,
    including $76 million for the Safe Motherhood Initiative, $8.8 billion
    for the HRSA, including $715 million for the Title V Maternal and Child
    Health Services Block Grant, $189 million for the National Center for
    Health Statistics (NCHS), $471 million for AHRQ, and continued,
    sustained, broad support for the U.S. Department of Health and Human
    Services and programs relevant to pregnant and post-partum people and
    their children.
        Established in 1977, SMFM is the national voice for clinicians and
    researchers with expertise in high-risk pregnancies. A non-profit
    association representing more than 5,000 individuals, the core of
    SMFM's membership is comprised of maternal-fetal medicine (MFM)
    subspecialists. MFM subspecialists are obstetricians with an additional
    3 years of formal education and who are board certified in maternal-
    fetal medicine, making them highly qualified experts and leaders in the
    care of complicated pregnancies. Additionally, SMFM welcomes physicians
    in related disciplines, nurses, genetic counselors, ultrasound
    technicians, MFM administrators, and other individuals working towards
    optimizing the care of women with high-risk pregnancies.
        SMFM members see the most at-risk and complex patients, with the
    goal of optimizing outcomes for pregnant people and their children.
                      national institutes of health/nichd
        The Eunice Kennedy Shriver National Institute for Child Health and
    Human Development (NICHD)'s investment in maternal and child health
    outcomes is essential to understanding the rising maternal mortality
    and severe morbidity rates and to optimize maternal and child health.
        Task Force Specific to Pregnant Women and Lactating Women (PRGLAC):
    SMFM urges Congress to continue its strong support for the PRGLAC Task
    Force, housed at NICHD. PRGLAC submitted its report to the Secretary in
    the fall of 2018 with 15 recommendations on including pregnant and
    breastfeeding people in clinical trials and broad research initiatives
    and is now in the midst of creating its implementation plan, which is
    expected in the summer of 2020. SMFM urges Congress to continue to
    support the implementation of the PRGLAC recommendations. It is
    essential that Congress support broader inclusion of pregnant and
    lactating people in research, so that lifesaving interventions and
    treatments can be addressed for this population.
        Maternal-Fetal Medicine Units Network (MFMU): SMFM urges continued
    strong support of the MFMU and ask that Congress allocate $30 million
    to support the Network's continued work. Established in 1986 to achieve
    a greater understanding and pursue development of effective treatments
    for the prevention of preterm births, and reduce low birth weight
    infants, fetal growth abnormalities, fetal mortality and medical
    complications during pregnancy the MFMU is a critical resource to
    addressing the nation's growing maternal health crisis. We hope that
    the NICHD will leverage the MFMU to build on its success by ensuring
    its highly efficient structure of multicenter collaborative research.
    The MFMU has a strong history of changing and improving clinical
    practice and obstetric management, improving outcomes of pregnant
    people and babies in the United States, and is extremely successful, as
    25.6 percent of all publications from the network are cited in clinical
    practice guidelines. These guidelines are relied upon by Medicaid and
    Medicare programs to define evidence-based services covered under the
    plans. The work of the network is even more urgent given the increase
    in maternal mortality and severe morbidity in the US. We urge Congress
    to ensure stable and sustained funding and infrastructure for the MFMU,
    and to ensure that any proposed change in the funding mechanism or
    structure for the MFMU not compromise the ability of the network to
    remain nimble and directly address the changing landscape of women's
    health, including to reduce health disparities.
        Preterm Birth: Delivery before 37 weeks' gestation is associated
    with increased risks of death in the immediate newborn period as well
    as in infancy and can cause long-term complications. About 20 percent
    of premature babies die within the first year of life. Although the
    survival rate is improving, many preterm babies have life-long
    disabilities including cerebral palsy, mental retardation, respiratory
    problems, and hearing and vision impairment. Preterm birth costs the
    U.S. $32.5 billion annually. Great strides are being made through
    NICHD-supported research to address the complex situations faced by
    mothers and their babies. One of the most successful approaches for
    testing research questions is the NICHD research networks which allow
    researchers from across the country to collaborate and coordinate their
    work to change the way we think about pregnancy complications and
    change medical practice across the country. These networks deal with
    different aspects of pregnancy the problem of preterm birth and its
    consequence.
                centers for disease control and prevention (cdc)
        The CDC's Division of Reproductive Health (DRH) as well as the
    National Center for Birth Defects and Developmental Disabilities
    (NCBDDD) are doing important work related to pregnancy. The data
    collection efforts related to pregnancy outcomes, maternal mortality
    and medications in pregnancy must continue. The support from CDC to
    states related to data collection and especially maternal mortality
    review committees will go a long way toward tackling this growing
    public health problem. According to the NCHS, the maternal mortality
    rate in 2018 was 17.4 deaths per 100,000 live births and racial
    disparities persisted with a maternal mortality rate of 37.1 per
    100,000 live births among non-Hispanic black women compared to 14.7
    among non-Hispanic white women. SMFM fully supports Congress' attention
    to reducing maternal mortality through CDC's Safe Motherhood
    Initiative, supporting the highest possible allocation for this work.
    We ask Congress to allocate $30 million for the maternal mortality
    review committees (MMRCs) and their continued work. Funding for
    perinatal quality collaboratives (PQCs) and other initiatives that
    would investigate and transparently report on maternal mortality causes
    while reducing health disparities are essential in tackling our
    nation's rising maternal mortality rates. We also ask Congress to
    allocate $100 million for the CDC's Surveillance for Emerging Threats
    to Moms and Babies initiative.
              health resources and services administration (hrsa)
        The work of HRSA is critical to maternal and child health. HRSA's
    initiatives reduce infant mortality, improve maternal health and
    wellbeing, and serve more than 50 million people through the MCH block
    grant. The MCH block grant is critical to ensure that women and their
    children have access to quality care. These funds provide and ensure
    access to comprehensive prenatal and postnatal care to women--
    especially low income and at-risk pregnant people. The Title V MCH
    Block Grant programs save Federal and State Governments money by
    ensuring delivery of preventive services to avoid more costly chronic
    conditions later in life. Additionally, HRSA's family planning
    initiatives ensure access to comprehensive family planning and
    preventive health services for more than 4 million people, thereby
    reducing unintended pregnancy rates. Finally, HRSA's support for the
    Alliance for Innovation in Maternal Health Care (AIM) reduces maternal
    mortality through implementation of care bundles at the state and
    institutional level. These bundles help reduce maternal mortality
    through quality improvement in various areas including postpartum
    hemorrhage and hypertension. We encourage Congress' support for this
    important program that will help reduce maternal mortality nationally.
               agency for healthcare research and quality (ahrq)
        Projects conducted at the Agency for Healthcare Research and
    Quality (AHRQ) are critical to ensuring that research is translated
    from bench to bedside through comprehensive implementation in the
    everyday practice of medicine. Unfortunately, over the past decade,
    AHRQ's existence has been under threat. AHRQ is the only Federal agency
    that funds research on ``real-life'' patients--those with comorbidities
    and co-existing conditions, including high-risk pregnant people. In
    2000, an estimated 60 million Americans had multiple chronic
    conditions. By 2020, an estimated 81 million people will have multiple
    chronic conditions, and the costs of their care will consume 80 percent
    of publicly funded health insurance programs, such as Medicare and
    Medicaid. SMFM hosted a workshop in February 2020 on implementation
    practices in maternal mortality. AHRQ's support in ensuring widespread
    uptake among providers, public health officials, health systems and
    states is essential to ensuring that best practices and guidance is
    implemented broadly to reduce maternal mortality and severe maternal
    morbidity.
        Prioritizing Maternal Health During COVID-19: The COVID-19 pandemic
    has exposed the existing inequities and gaps within our healthcare
    system for people across the country, including pregnant people. It is
    now more important than ever to ensure that pregnant and lactating
    people are being included in clinical research related to COVID-19 and
    vaccine and therapeutic development. We urge HHS to prioritize and
    adequately fund efforts for maternal health that aim to reduce maternal
    mortality and severe morbidity during and after the pandemic.
                                   conclusion
        With your support of vital HHS programs, researchers, clinicians
    and patients can continue to peel away the layers of complex problems
    of pregnancy that have such devastating consequences and truly improve
    the health and wellbeing of mothers and babies.

        [This statement was submitted by Dr. Judette Louis, MD, MPH,
    President,
    Society for Maternal-Fetal Medicine.]
                                     ______

               Prepared Statement of the Society for Neuroscience
        Mr. Chairman and members of the Subcommittee, I am Barry Everitt,
    President of the Society for Neuroscience (SfN) and it is my honour to
    present this testimony on behalf of the Society in strong support of at
    least $44.7 billion, a $3.0 billion increase over fiscal year 2020, in
    funding for the National Institutes of Health (NIH) for fiscal year
    2021, including the release of the 21st Century Cures funding. As both
    a researcher and as a Professor in the Department of Psychology at
    Cambridge University, I understand the critical importance of Federal
    funding for neuroscience research in the United States.
        My own research focuses on the neural and psychological basis of
    drug addiction and is dedicated to understanding the maladaptive
    engagement of the learning, memory, and motivational mechanisms that
    underlie compulsive drug use. Drug abuse and addiction are critical
    issues in my country as in yours, having devastating consequences at
    the individual, family, and society levels. My research group has made
    significant advances in showing that structural and neurochemical
    changes in the brain associated with behavioral impulsivity confer a
    major risk on the vulnerability to develop cocaine addiction. We have
    also demonstrated the neural circuit basis of the transition from
    recreational to the compulsive use of opioids, stimulants and alcohol,
    revealing commonalities as well as differences in the neural basis of
    addiction to these drugs. This understanding has opened the door to the
    development of novel pharmacological and psychological treatments for
    addiction that may promote and maintain abstinence from drug use. For
    example, we have shown that a novel opioid receptor antagonist greatly
    decreases opioid, cocaine, and alcohol use in animal models, as well as
    showing its efficacy and safety in experimental studies in humans. We
    have further revealed that reducing the impact of maladaptive drug
    memories can promote abstinence from drug use, as well as being
    effective in the treatment of anxiety disorders and post-traumatic
    stress disorder (PTSD). The NIH, especially NIDA and NIAAA, supports
    the great majority of the global research on addiction and its
    treatment and this is a shining example of how governmental funding for
    research in the US leads the world and inspires related and
    collaborative research internationally on this major brain disorder.
        SfN believes strongly in the research continuum: basic science
    leads to clinical innovations, which lead to translational uses that
    impact the public's health. Basic science is the foundation upon which
    all health advances are built. However, basic research depends on
    reliable, sustained funding from the Federal Government. SfN is very
    grateful to Congress for its appropriations and increases for NIH over
    the last 5 years. Growing the NIH budget over $11 billion in that
    period is exactly the kind of sustained effort that is needed, and your
    continued support will pay dividends for years to come.
        SfN stands with the more than 335 organizations and institutions in
    the biomedical research community supporting an increase in NIH funding
    of at least $3.0 billion above the final fiscal year 2020 level,
    including the release of the 21st Century Cures funding. This increase
    is consistent with those provided by this committee for the past few
    years and provides certainty to the field of science, allowing for the
    exploitation of more scientific opportunity, more training of the next
    generation of scientists and more improvements in the public's health.
        Equally as important as providing a reliable increase in funding
    for biomedical research is also ensuring that funding is approved
    before the end of the fiscal year. Your success in 2018 in completing
    appropriations prior to the start of the fiscal year was a tremendous
    benefit to research. Continuing Resolutions have significant
    consequences on research, including restricting NIH's ability to fund
    grants. For some of our members, this means waiting for a final
    decision to be made on funding before knowing if their perfectly scored
    grant would in fact be realized, or operating a lab with 90 percent of
    the awarded funding until appropriations are final. All of this has
    real and negative impacts on research and all of the positive benefits
    that research provides in this country. Meeting the example you set in
    2018 would be another substantial benefit to science.
        I would also like to express my and the Society's appreciation for
    your support of the Brain Research through Advancing Innovative
    Neurotechnologies (BRAIN) Initiative. While only one part of the
    research landscape in neuroscience, the BRAIN Initiative has been
    critical in promoting future discoveries across neuroscience and
    related scientific disciplines (see an example below). By including
    funding in 21st Century Cures--and note that it is only part of the
    funding that the BRAIN Initiative will require--Congress helped
    maintain the momentum of this endeavor. Note however, using those funds
    to supplant regular appropriations would be counterproductive. There is
    no substitute for robust, sustained, and predictable funding for NIH.
        The deeper our grasp of basic science, the more successful those
    focused on clinical and translational research will be. We use a wide
    range of experimental and animal models that are not used elsewhere in
    the research pipeline. These opportunities create discoveries--
    sometimes unexpected discoveries--that expand knowledge of biological
    processes, often at the molecular level. This level of discovery
    reveals new targets for research to treat all kinds of brain disorders
    that affect millions of people in the United States and beyond.
        As the leading scientific society dealing with the brain and the
    central nervous system, SfN hosts one of the largest annual scientific
    meetings and publishes two highly-rated scientific journals where
    scientific discoveries are put on display. Some recent, exciting
    advancements include the following:
    Decoding Speech From the Brain
        The BRAIN Initiative has been key for developing new technologies
    that may one day be used in the clinic. For patients suffering from a
    stroke and other neurological disorders, the loss of speech due to
    paralysis in the muscles in their face and neck can be devastating and
    leaves few ways to communicate quickly or easily. While there are
    devices that allow the use of head or eye movements to produce speech,
    these currently rely on choosing individual words or letters one at a
    time and are consequently very slow. Researchers hoping to close this
    communication gap recorded the brain activity of volunteers when
    speaking, including their muscle movements associated with speech. They
    were then able to use machine learning techniques to decode these brain
    signals, creating simulated movements of the vocal track that could be
    turned into synthesized speech. Testers asked to transcribe these
    sentences were able to accurately determine the phrases more than half
    of the time. While further refinement and testing is needed before this
    technology can be used with patients, it provides a path towards
    restoring speech those who have lost the ability.
    Generating a Library of New Molecules
        The discovery of new molecules and compounds is critical to
    developing new drugs to treat mental illnesses and other neurological
    disorders. To facilitate this, scientists funded by NIH have created an
    expanding virtual library of what will soon be 1 billion new molecules
    that can be tested for compatibility with specific receptors in the
    brain. Using this expansive library, researchers were able to model how
    each molecule would interact with the receptor they were interested in
    blocking and then choose the most likely candidates to test in the lab.
    Through this method, they were able to generate six new molecules that
    interacted specifically with a dopamine receptor type linked to
    schizophrenia, ADHD, Parkinson's disease, and other neurological
    conditions. The creation of this extensive, publicly available library
    will allow researchers around the world to expand their search for new
    treatments.
                             summary and conclusion
        NIH funding is not only critical for the future of biomedical
    research and for training researchers at the bench, but is also a key
    economic driver of science in the United States through funding
    universities and research organizations across the country. For this
    nation to remain a leader in biomedical research, Congress must
    continue to support basic research that fuels discoveries as well as
    the economy.
        To reiterate, the Society for Neuroscience strongly supports the
    appropriation of at least $44.7 billion for the National Institutes of
    Health for fiscal year 2021, including the release of the 21st Century
    Cures Act funding. Like the Subcommittee, we also strongly support the
    appropriation of this funding in a timely manner, one that avoids
    delays in approving new research grants or causes reductions in funding
    for already approved research funding.
        Thank you for your strong and continued support and I look forward
    to working with you to ensure that research remains central to the
    economy and remains a priority of the Congress. The trinity created
    among Congress, the NIH, and the scientific research community has
    created great benefits for the United States, its people, and those
    suffering from diseases and disorders. As an international researcher,
    I also see clearly the global impact of your funding of the NIH. On
    behalf of the Society for Neuroscience, I urge you to continue it.

        [This statement was submitted by Barry Everitt, Sc.D., F.R.S.,
    President, Society for Neuroscience.]
                                     ______

         Prepared Statement of the Society for Women's Health Research
        On behalf of the Society for Women's Health Research (SWHR), I am
    pleased to submit testimony to the Subcommittee on Labor, Health and
    Human Services, and Education, and Related Agencies. We will highlight
    important work related to women's health being conducted at the U.S.
    Department of Health and Human Services (HHS) for fiscal year 2021.
    With that in mind, SWHR urges Congress to ensure the Centers for
    Medicare and Medicaid Services (CMS), Centers for Disease Control and
    Prevention (CDC), National Institutes of Health (NIH), Health Resources
    and Services Administration (HRSA) and Agency for Healthcare Research
    and Quality (AHRQ) are adequately funded in fiscal year 2021.
        We specifically urge the Committee to support a total of $44.7
    billion for the NIH, including proportional increases to fund the
    Eunice Kennedy Shriver National Institute of Child Health and Human
    Development (NICHD) and Office of Research on Women's Health (ORWH). We
    support at least $8.3 billion in funding for the CDC; $8.8 billion for
    HRSA, including at least $715 million for the Title V Maternal and
    Child Health (MCH) Services Block Grant; and $471 million for AHRQ. We
    encourage continued, sustained, broad support for HHS and programs
    relevant to women's health and women's health research.
        Founded in 1990, SWHR is the thought leader in promoting research
    on biological sex differences in disease and improving women's health
    through science, policy, and education. An appropriately funded, robust
    Federal research agenda that is committed to furthering women's health
    research is critical for the U.S. to address gaps in knowledge and
    achieve equity in healthcare for women.
                      national institutes of health (nih)
        The NIH is America's premier medical research agency and the
    largest source of funding for biomedical and behavioral research in the
    world. As such, its public health mission is vital to promote the
    overall health and well-being of Americans by fostering creative
    discoveries and innovative research, training and supporting
    researchers to ensure continued scientific progress, and expanding the
    scientific and medical knowledge base.
        Multiple initiatives within the NIH are aimed at improving the
    health of women. The agency released its Trans-NIH Strategic Plan for
    Women's Health Research in April 2019, which laid out broad agency
    goals to complement its more targeted women's health programs. The
    NIH's emphasis on improving standard research methodologies to better
    address sex and gender and funding relevant women's health research
    makes continued strong support of this agency fundamental to supporting
    women's health.
    Eunice Kennedy Shriver National Institute of Child Health and Human
            Development (NICHD)
        Housed within the NIH, the NICHD has achieved extraordinary feats
    in research on women's health throughout the lifecycle. The NICHD
    conducts critical and timely studies that support the health of women
    and children--such as the recently launched study analyzing the effects
    of the COVID-19 pandemic on pregnancy and delivery nationwide. It is
    only with adequate resources that the NICHD can build upon new and
    existing initiatives to address knowledge gaps and identify solutions
    to benefit women, children, and families throughout the U.S. Several of
    these initiatives are detailed below.
        Reproductive Sciences: The NICHD's reproductive biology research is
    vital in improving treatment options for serious gynecologic
    conditions. Research on many of these conditions is broadly underfunded
    in proportion to their significant burden on millions of women. For
    example, more than 11 percent of reproductive-aged women are living
    with endometriosis, and more than 80 percent of African American women
    and almost 70 percent of white women will develop uterine fibroids at
    some point in their lifetime. Despite the prevalence of these diseases
    and their potentially severe effects on women, their families, and
    society, a clear understanding of the basic biology behind these
    conditions is lacking, resulting in delayed diagnosis and limited
    treatment options. Given the history of limited funding allocated to
    research on these conditions, it is imperative that the NICHD receive
    robust funding to continue and expand upon this essential work.
        Task Force on Research Specific to Pregnant Women and Lactating
    Women (PRGLAC): The NICHD is leading the field in supporting inclusion
    of pregnant and lactating women in clinical trials. Pregnant women
    historically have been excluded from research--even in studies that
    would advance knowledge of medical conditions and treatments in
    pregnancy. The PRGLAC task force is now in the second phase of its
    efforts to develop a strategy to implement 15 recommendations outlined
    in its mandated report to Congress and HHS. The NICHD must have
    sufficient resources for PRGLAC to continue its important work in this
    area.
        PregSource: The NICHD's PregSource initiative allows pregnant
    women to track health data from gestation to early infancy and access
    evidence-based information about normal and abnormal pregnancy
    experiences. This program encourages researchers to use aggregated data
    and recruit pregnant and postpartum women in clinical trials. It is
    making important headway in eliminating knowledge gaps and imbalances
    in care for these understudied patient populations.
        Maternal Mortality: The NICHD's Pregnancy and Perinatology Branch
    plays a pivotal role in supporting research to improve the health of
    women before, during, and after pregnancy. Its work is central in
    continuing to reduce the number of preterm births and pregnancy and
    delivery complications, and in ensuring the long-term health of mothers
    and their children. Approximately 10 percent of births in the US are
    preterm, and rates are much higher in some minority populations. The
    2018 US maternal mortality rate was 17.4 deaths for every 100,000 live
    births--meaning the US is faring much worse than comparatively wealthy
    countries. Research conducted in these areas by the NICHD and other
    agencies will be crucial in limiting the number of pregnancy-related
    complications and deaths in the US.
    Office of Research on Women's Health (ORWH)
        As the NIH focal point for coordinating women's health research,
    the ORWH ensures women are appropriately represented in biomedical and
    behavioral research supported by the NIH. SWHR has long supported the
    idea that studying, analyzing, and reporting on sex differences should
    be standard practice across all research. It is well-known that sex
    differences exist at all levels: cellular, molecular, and systems.
    Furthermore, it is understood that these differences affect research
    outcomes in a variety of significant ways.
        In 2015, the NIH announced a policy (NOT-OD-15-102) to factor sex
    as a biological variable (SABV) into research designs, analyses, and
    reporting for NIH-funded vertebrate animal and human studies. The ORWH
    leads collaborations across the NIH to implement this policy and
    develop research programs such as Building Interdisciplinary Research
    Careers in Women's Health (BIRCWH), an initiative that aims to increase
    the number and skills of investigators who conduct research on sex and
    gender influences on health and disease. The Specialized Centers of
    Research Excellence (SCORE), another signature ORWH program, is
    designed to expedite the development and application of new knowledge
    to human diseases that affect women, to learn more about the etiology
    of these diseases, and to foster improved approaches to treatment and/
    or prevention. The ORWH needs adequate funding to continue these
    initiatives and to support scientists across the country who are
    conducting groundbreaking research on sex differences.
    National Institute on Minority Health and Health Disparities (NIMHD)
        The NIMHD serves as the leader on scientific research initiatives
    dedicated to improving minority health and reducing health
    disparities--differences in the incidence and outcome of health
    conditions among specific populations defined by race or ethnicity, sex
    and gender, disability status, geographic location, or other
    sociodemographic classifications. The NIMHD invests in critical
    research on minority health and health disparities. Its work informs
    practice and policy to increase the scientific community's focus on
    equally important non-biological factors such as socioeconomics,
    discrimination, culture, and environment in relation to health
    disparities.
                centers for disease control and prevention (cdc)
        The CDC's Division of Reproductive Health (DRH) and its goals of
    improving women's health from menarche to menopause; improving
    pregnancy health and care; and improving fetal, newborn, and infant
    health are areas of fundamental importance to women and their families.
    The DRH's work to address issues of chronic disease among women of
    reproductive age and its data collection efforts related to pregnancy
    outcomes, maternal mortality, and medications in pregnancy must
    continue. Funding for maternal mortality review committees (MMRCs),
    perinatal quality collaboratives (PQCs), and other initiatives that
    investigate and transparently report on maternal mortality causes while
    reducing health disparities are essential in tackling our nation's
    rising maternal mortality rates.
        Additionally, the CDC's work will be vital to continued disease
    monitoring and prevention during the novel coronavirus outbreak.
    Studying sex and gender differences in COVID-19 infection rates and
    outcomes will help us to figure out why the virus is affecting men more
    severely and to understand how we can better improve our responses to
    future pandemics. Increasing CDC funding for pandemic response will
    improve the agency's ability to collect reliable, consistent data about
    COVID-19, including sex and gender differences in deaths, symptoms,
    risk factors, and virus exposure.
              health resources and services administration (hrsa)
        The work of HRSA is crucial to women's health. HRSA's initiatives
    reduce infant mortality and improve maternal health and wellbeing
    through its support of pregnant women, mothers, and their families. The
    Title V Maternal and Child Health (MCH) Block Grant is specifically
    tailored to address the needs of pregnant women and their families by
    providing access to comprehensive prenatal and postnatal care to
    women--especially low-income and at-risk pregnant women. HRSA support
    saves Federal and State Governments money by ensuring delivery of
    preventive services to avoid more costly chronic conditions later in
    life.
    Agency for Healthcare Research and Quality (AHRQ)
        AHRQ ensures that research is translated from bench to bedside
    through comprehensive implementation in the everyday practice of
    medicine. AHRQ is the only Federal agency that funds research on
    ``real-life'' patients--including women with comorbidities and co-
    existing conditions and high-risk pregnant women. Approximately 38
    percent of women have a least one diagnosed chronic disease, as
    compared to 30 percent of men, making this a topic of particular
    relevance to women's health, as individuals with complex comorbidities
    are typically excluded from research studies. Budget cuts in recent
    years have led to termination of various disease programs and
    portfolios, limiting the impact of AHRQ's important work. Increasing
    AHRQ's funding will lead to better care for women and for all
    Americans.
                                   conclusion
        In conclusion, I would like to thank the Chair, Ranking Member, and
    the Committee for their support for medical and health services
    research and their commitment to the health of the nation. Thank you in
    advance for consideration of this HHS fiscal year 2021 funding request
    and the rationale behind it. If you have questions, please contact
    Melissa Laitner, PhD, MPH, Director of Science Policy, at
    melissa@swhr.org.

        [This statement was submitted by Kathryn G. Schubert, President &
    CEO,
    Society for Women's Health Research.]
                                     ______

          Prepared Statement of Texas Families and Friends for Choice
        Chairman Blunt, Ranking Member Murray, and Committee Members,
        Thank you for your service and for affording families the
    opportunity to present testimony.
         interest and request of texas families and friends for choice
        I am Debra Wallace of Red Rock, Texas and mother of Justin Wallace,
    aged 39, who is severely autistic and profoundly communicatively and
    behaviorally impaired. I am submitting this testimony not only on
    behalf of my child, but for all residents of the Texas state centers
    and their families, who view those same centers as a safe and
    supportive community that is uniquely theirs. The Texas Families and
    Friends for Choice (TFFC) is comprised of those guardians who choose to
    place their loved in one of our thirteen (13) Texas centers.
        Justin lived at home for 18 years with me, my husband and his four
    siblings. All therapies were attempted, and doctors were consulted to
    help our precious child. When our autistic little boy morphed into a
    strong young man, we realized our greatest fear; we were no longer
    physically capable of managing his care and safety. Initially, we were
    pushed to place him in a group home situation, but the outcomes for
    those individuals with a high level of need in ``community'' homes were
    often troubling and even tragic.
        Today, he happily resides at the Austin State Supported Living
    Center, where he participates in activities, and, like many other
    residents, works at the sheltered workshop for his weekly paycheck.
    Like the many members of TFFC, we chose to place our severely disabled
    child in a facility that would keep him safe and provide a community
    that would truly understand his needs. Unlike the understaffed and
    isolating group homes, the Intermediate Care Facility (ICF) staff meet
    our severely disabled loved ones where they are, rather than forcing
    them into a world that overwhelms and misunderstands them. The centers
    provide twenty four (24) hour medical care, field trips, computer,
    swimming, gardening, holiday events, choir, music therapy and so much
    more.
        After years of struggle and fighting for our children, families
    believed we had found the best life for them. But that was not to be.
    The funds that have flowed from the Federal Government have created a
    battlefield in many states, closing many facilities, denying IDD people
    their safe havens or even their lives. Families are bankrupting
    themselves in order to oppose the skewed ideology of ``community
    first'' that is being funded by the Federal Government. Therefore, TFFC
    is requesting relief from the Department of Health and Human Services
    (HHS) programs and policies which undermine Texas ICF centers and
    attempt to deny guardians their right to chose the best program/
    placement for their loved ones.
                          hhs dd act programs in texas
        As a parent I have witnessed first hand the propaganda used against
    the ICF centers and the families that support them by recipients of DD
    Act funds. Health and Human Services (HHS) through its grants to
    programs created under the Developmental Disabilities Assistance and
    Bill of Rights Act (Public Law 106-402--the DD Act) has been
    responsible for many of the groups intent on closing Texas' larger
    residential centers for persons with cognitive deficits and other
    developmental disabilities.
        Health and Human Services (HHS) through its grants to programs
    created under the Developmental Disabilities Assistance and Bill of
    Rights Act (Public Law 106-402--the DD Act) has been responsible for
    many of the groups intent on closing Texas' larger residential centers
    for persons with cognitive deficits and other developmental
    disabilities. The DD Act programs are: (1) State Councils on
    Developmental Disabilities, (2) Protection and Advocacy (P&A) systems,
    (3) National Network of University Centers for Excellence in
    Developmental Disabilities Education, Research and Service (UCEDD)
    programs and (4) Projects of National Significance (PNS).
        There have been no Congressional hearings on the DD Act in over 20
    years. It was last reauthorized in 2000 for a period of 7 years. Why
    does Congress continue to fund programs without opportunity for
    families adversely affected to provide testimony? How will this
    subcommittee protect Justin and his peers from destructive policies and
    activities promoted and carried out by those who are on the Federal
    payroll? Each legislative session, the Arc, the Protection and Advocacy
    group, Disability Rights, and the Coalition for Texans with
    Disabilities have testified that our life-saving centers should be
    closed, forcing our most vulnerable loved ones into unstable and
    treacherous situations. In fact, during a 2014-2015 attempt to close
    centers in Texas by HHS, fifty (50) IDD men were evicted from the
    Austin State Supported Living Center, and subsequently a minimum of
    twenty percent of them died within a short span. One resident, who was
    placed there by his parents, had lived at the center for fifty years
    due to a severe seizure disorder. Following the death of his parents,
    his guardianship was given to an agency who clearly had a conflict of
    interest, as it was a community group home provider. He passed away two
    weeks after his move. His family's wishes were ignored, because of an
    aggressive push from these federally funded ideologues. Often, TFFC
    families must drive across our vast state to counter the ``advocates''
    testimony and attempt to halt closures and save lives. As there is no
    agency funded to defend these facilities against closures, families
    have to find ways to mount a legal defense on their own. Advocacy
    groups do not protect those who move into the perfect mythological
    community, as it would deny their very purpose for existence.
        Families have also witnessed the testimony of ``advocates'' to
    limit or sunset guardianships. After many years of loving, sacrificing
    for, and fighting for a beloved child, families hardly need a
    professional advocate who has a ``one size fits all'' outcome in mind
    to take control of their child's/sibling life. Guardians are under
    siege in Texas, and I have witnessed suggestions to legislators that
    guardianships be ``sunsetted''. What better way to expedite the closing
    of care facilities and eliminate choice than to vacate guardianships?
    Again, the agency pushing this strategy, is partially funded by the
    Texas Council on Developmental Disabilities (TCDD).
        The Texas Advocates, who are funded by the Texas Council on
    Developmental Disabilities, made an initial visit to the Austin SSLC in
    February of 2019. I attended the meetings their director and grant
    writer had set up for residents of the facility. It was evident that
    the objective of the program was to persuade residents of the facility
    to leave and live in a group home setting. During their meeting, the
    mentors instructed the peer advocates to get permission from the
    residents to participate in the program, and if the resident was
    incapable of responding, they could state that a blink was consent. If
    this was challenged by the guardian, a hearing could be set up to
    override the guardian's decision. When I asked for a copy of the grant,
    everyone ceased talking. The grant writer would not respond to me.
    Later in the conversation, the mentor reminded the peer advocates that
    there would be a scheduled deinstitutionalization rally on the steps of
    the Texas Capitol in March. In the next session that same day, I
    witnessed two severely disabled elderly women wheeled in. It was
    inappropriate, as they were unable to answer questions or play games.
    They were both suffered from severe cerebral palsy and IDD and had been
    forced to come to the meeting on that cold, wet February afternoon.
    Over the next few months, I witnessed this repeatedly. I complained to
    the Human Rights officer and never received a response. One young man,
    who came in later and stated that he did not want to leave the center
    was pressured by the group and the mentors. Guardians were openly
    criticized as being obstacles to success on a regular basis. Funding
    for this program comes from the TCDD.
        The Arc has openly stated that Money Follows the Person funds would
    be used to assist in closing facilities. They testify and pressure
    legislators to close centers in Texas. Employees have been known to
    mock family members and coach their advocates to tell families that
    they are selfish for placing loved ones in a care facility rather than
    keeping them home (not always possible), or that they are taking funds
    from the community programs. Meanwhile, they do not assist desperate
    families, like my own, in placing their loved ones who could never
    thrive in a group home, into facilities. Last night I listened to a
    desperate single mother who is in her sixties, plead for help in
    placing her three hundred (300) pound 35 year old, violent, self
    injurious, severely autistic son into a facility. The Arc nor
    Disability Rights will assist her.
                                    request
        We respectfully request you consider report language in the fiscal
    year 2021 LHHS spending bill barring Federal funds from incentivizing
    states to close their specialized facilities for persons unable to care
    for themselves. Suggested Report Language for fiscal year 2021 Spending
    Bill, Attachment 2.
        Respectfully submitted.

        [This statement was submitted by Debra Wallace, Texas Families and
    Friends for Choice.]
                                     ______

           Prepared Statement of the Tourette Association of America
        Dear Chairman Blunt, Ranking Member Murray and Members of the
    Subcommittee:
        The Tourette Association of America (TAA) would like to take this
    opportunity to thank the members of the Subcommittee for the
    opportunity to submit written testimony and for considering our request
    for funding for fiscal year 2021. The Centers for Disease Control and
    Prevention (CDC) play a pivotal role in educating the public. To that
    end, the Tourette Syndrome Public Health Education and Research Program
    at the CDC is critically important to the TS and Tic Disorder
    community. We respectfully request that you continue funding the
    enacted level $2 million appropriation for the program in fiscal year
    2021 Labor, Health and Human Services (LHHS), Education and Related
    Agencies Appropriations. The program on Tourette Syndrome is
    administered within the National Center on Birth Defects and
    Developmental Disabilities (NCBDDD) at the CDC, in partnership with the
    TAA. This program was established by Congress in the Children's Health
    Act of 2000 (Public Law 106-310 Title 23) and is the only such program
    that receives Federal funding for Tourette Syndrome (TS) public health
    education. With your support at the previously enacted level of $2
    million, CDC can ensure critically necessary progress continues in the
    areas of public education, research and diagnosis for TS and Tic
    Disorders.
        The TAA is the premier national non-profit organization working to
    make life better for all people affected by TS and Tic Disorders. We
    have served in this capacity for 46 years. Tics are involuntary,
    repetitive movements and vocalizations. They are the defining feature
    of a group of childhood-onset, neurodevelopmental conditions known
    collectively as Tic Disorders and individually as Tourette Syndrome,
    Chronic Tic Disorder (Motor or Vocal Type), and Provisional Tic
    Disorder. People with TS and Tic Disorders often have substantial
    healthcare costs across their lifespan for healthcare visits, special
    educational services, medication, and psychological and behavioral
    counseling. In a recent survey conducted by the TAA (2018 TAA Impact
    Survey: https://tourette.org/research-medical/impact-survey/), 63
    percent of parents struggle to cover the high costs of services for
    their child such as counseling, appointments and tutoring; 34 percent
    of parents report they lost their job or they are not able to work as
    often due to the increased caregiver duties of having a child living
    with TS; and, 18 percent of parents are not able to afford medications
    and/or desired medical care for their child.
        The CDC Tourette Syndrome Website (https://www.cdc.gov/ncbddd/
    tourette/data.html) on data and statistics states that data suggests
    roughly 50 percent of children and teens with TS are not diagnosed.
    Studies including children with both with diagnosed and undiagnosed TS
    have estimated that 1 out of every 162 children (0.6 percent) have TS.
    However, these numbers do not include children with Chronic or
    Provisional Tic Disorders. The estimated combined total of all school-
    aged children with TS or another related Tic Disorder is approximately
    1-in-100. Factoring in lifelong prevalence, we estimate 1 million
    adults and children are living with Tourette Syndrome or another Tic
    Disorder in the United States today. Diagnosis is often complicated.
    Among children diagnosed with TS, 86 percent have been diagnosed with
    at least one additional mental, behavioral, or developmental condition
    according to the CDC website. These co-occurring conditions include
    Attention Deficit-Hyperactivity Disorder (ADHD), Obsessive Compulsive
    Disorder (OCD), Autism, Oppositional Defiance Disorder, anxiety,
    depression, learning difficulties among others and can significantly
    impact the lives of those affected by TS. In fact, in TAA's 2018 Impact
    Survey, 42 percent of children felt that dealing co-occurring
    conditions was one of the biggest challenges in managing TS. In
    addition, 32 percent of children and 51 percent of adults have
    considered suicide or participated in self-harming behaviors. This
    underscores the need to increase the diagnosis rate so physicians,
    teachers and parents can ensure that adequate support services are in
    place. The CDC TS Program works to ensure primary care, family doctors
    or pediatricians are equipped with the additional knowledge necessary
    either to diagnose or to refer a patient for optimal treatment.
        Education professionals often do not receive detailed instruction
    on how to assess and accommodate students who may have TS and Tic
    Disorders. A study published in the Journal of Developmental &
    Behavioral Pediatrics and written in partnership between the CDC and
    the Tourette Association of America, ``Impact of Tourette Syndrome on
    School Measures in a Nationally Representative Sample'', found children
    with Tourette were more likely to have an individualized IEP, have a
    parent contacted about school problems and have incomplete homework as
    compared to children without Tourette or a Tic Disorder. Additionally,
    most children with Tourette Syndrome had other mental, behavioral, or
    emotional disorders or learning and language disorders. In TAA's 2018
    Impact Survey, 83 percent of children felt that TS negatively impacted
    their school experience and education and 69 percent of parents noted
    their child having an individualized education plan (IEP) or 504 plan
    in place at their school. Educators spend a significant amount of time
    with their students providing more opportunities to assess symptoms and
    behavior over a longer period of time. By increasing their knowledge
    base and understanding of Tourette Syndrome, Tic Disorders and
    associated co-morbidities, educators can refer students for medical
    assessment and can also better serve the needs of this population whose
    challenges are unique to the disorder. Educators can then begin to work
    more closely with medical providers to develop effective,
    individualized education plans.
        TS and Tic Disorders are greatly misunderstood and often suffer
    from misinformation and stigma. For example, coprolalia, the
    involuntary utterance of obscene and socially unacceptable words and
    phrases, is an extreme and rare symptom often sensationalized by the
    media. Less than 10 percent of those diagnosed have this symptom, it is
    not required for diagnosis, and does not persist in many cases. The CDC
    TS Public Health, Education and Research Program provides important
    information on symptoms/diagnostic criteria on their website and
    through the outreach program educating the public and parents on
    Tourette Syndrome and Tic Disorders to ensure a better understanding
    which can lead to better diagnosis, earlier treatment and a better
    understanding.
        Delayed diagnosis or the lack of diagnosis can increase healthcare
    costs, increase education costs and delay important treatment and
    therapy for the patient. Comprehensive Behavior Intervention for Tics
    (CBIT) is a non-medicated treatment consisting of three important
    components: training the patient to be more aware of his or her tics
    and the urge to tic; training patients to do competing behavior when
    they feel the urge to tic; and, making changes to day-to-day activities
    in ways that can be helpful in reducing tics. CBIT is now recognized as
    a first line treatment by the American Academy of Neurology: https://
    www.aan.com/Guidelines/Home/GuidelineDetail/958. The CDC Tourette
    Syndrome Public Health, Education and Research Program strives to
    increase the understanding and awareness among these critically
    important medical and education professionals to increase the
    percentage of school aged children with TS who are diagnosed, improve
    the timeframe from symptoms to diagnosis and educate them about
    treatment options like CBIT.
        We appreciate the opportunity to submit testimony and appreciate
    your thoughtful consideration of our request. TAA urges you to provide
    continued funding for fiscal year 2021 for the Tourette Syndrome Public
    Health Education and Research Program at CDC's National Center for
    Birth Defects and Developmental Disabilities at the previously enacted
    level of $2 million.
                                     ______

                   Prepared Statement of the Trauma Coalition
        As you consider Labor Health and Human Services appropriations for
    fiscal year fiscal year (2021), the Trauma Coalition, a broad group of
    organizations representing the nations frontline trauma providers,
    writes to ask the Committee to provide $11.5 million in funding for the
    Military and Civilian Partnership for the Trauma Readiness Grant
    Program.
        In 2016, the National Academies of Science, Engineering, and
    Medicine (NASEM) released a report titled, ``A National Trauma Care
    System: Integrating Military and Civilian Trauma Systems to Achieve
    Zero Preventable Deaths After Injury.'' This report finds that one of
    four military trauma deaths and one of five civilian trauma deaths
    could be prevented if advances in trauma care reach all injured
    patients. In the report, the National Academies recommended that the
    United States adopt an overall aim for trauma care of ``zero
    preventable deaths after injury,'' and sets forth elements of system
    redesign that would provide military personnel with real-world training
    and experience at civilian trauma centers. This training has the dual
    benefit of maintaining military surgical battle readiness between wars
    while at the same time improving civilian access to trauma care. The
    report concludes that military and civilian integration is critical to
    saving these lives both on the battlefield and at home, preserving the
    hard-won lessons of war, and maintaining the nation's readiness and
    homeland security.
        Section 204, of S. 1379, the Pandemic and All-Hazards Preparedness
    and Advancing Innovation Act of 2019 (PAHPAI), known as the MISSION
    ZERO Act was signed into law June 24, 2019 (Public Law No: 116-22).
    MISSION ZERO takes the recommendations of the NASEM report to create a
    U.S. Department of Health and Human Services (HHS) grant program to
    cover the administrative costs of embedding military trauma
    professionals in civilian trauma centers. These partnerships will allow
    military trauma care teams and providers to gain experience treating
    critically injured patients and increase readiness for when these units
    are deployed. Similarly, best practices from the battlefield are
    brought home to further advance trauma care and provide greater
    civilian access.
        When it comes to trauma care, a symbiotic military/civilian
    partnership of training, education, and memorializing this knowledge
    and skill has long existed. By facilitating the implementation of
    military-civilian trauma partnerships and growing and strengthening
    this collaboration, this program will preserve lessons learned from the
    battlefield, translate those lessons to civilian care, and ensure
    service members maintain their readiness to deploy in the future.
        We ask you to fully fund these lifesaving grants and include $11.5
    million for the Military and Civilian Partnership for the Trauma
    Readiness Grant Program. This funding will allow military and civilian
    trauma professionals and hospitals to harness the benefits of this
    unprecedented and innovative program.
        Our organizations stand ready to work with you to support this
    critical effort. Thank you for your consideration.

        American Academy of Orthopaedic Surgeons
        American Association of Neurological Surgeons
        American Burn Association
        American College of Emergency Physicians
        American College of Surgeons
        American Society of Plastic Surgeons
        American Trauma Society
        Congress of Neurological Surgeons
        Eastern Association for the Surgery of Trauma
        Emergency Nurses Association
        National Trauma Institute
        The American Association for the Surgery of Trauma
        Trauma Center Association of America
        Society of Trauma Nurses
                                     ______

              Prepared Statement of the Treatment Advocacy Center
        The Treatment Advocacy Center appreciates the opportunity to
    provide written testimony on the National Institute of Health fiscal
    year 2021 budget appropriations.
        The Treatment Advocacy Center is a national nonprofit dedicated
    exclusively to eliminating barriers to the timely and effective
    treatment of serious mental illnesses such as schizophrenia and bipolar
    disorder. Our organization promotes laws, policies and practices for
    the delivery of psychiatric care and supports the development of
    treatments for and research into factors of serious mental illness that
    have the potential for reducing suffering and improving lives of
    individuals living with these conditions.
        The National Institute of Mental Health (NIMH) is the main Federal
    Government agency for research into mental illness. The NIMH was
    authorized through the passage of the National Mental Health Act in
    1946 to better help individuals with mental health disorders through
    better diagnosis and treatments. With a budget of almost $2 billion in
    2020, the NIMH conducts research and funds outside investigators to
    better understand mental illness and develop new treatments to reduce
    the burden these disorders have on individuals.
        Unfortunately, the NIMH has a recent history of ignoring those with
    the most severe mental illnesses. As Treatment Advocacy Center Founder
    Dr. E. Fuller Torrey wrote in Psychiatric Times earlier this month:
        Congress awarded the National Institute of Mental Health an
    additional $98 million as part of the National Institutes of Health
    budget resolution in December 2019, which brings the NIMH budget to
    just under $2 billion and represents a 35 percent increase since 2015,
    one of the largest increases in the history of the NIMH. Yet, during
    the 5 years from 2015 through 2019, NIMH funded a total of 2 new drug
    treatment trials for schizophrenia and bipolar disorder, according to
    clinicaltrials.gov. This contrasts with the 5-year period from 2006
    through 2010 when NIMH funded 48 such trials. NIMH has thus almost
    entirely given up its role of evaluating drugs for the treatment of 2
    disorders (emphasis added).
        In December 2019, the NIMH released a draft of their five-year
    strategic plan for public comment. They reported receiving more than
    6,000 responses over the winter holidays, including from our
    organization identifying concrete examples of research initiatives the
    NIMH could be pursuing today to help people with serious mental illness
    recover and live better lives. Despite this robust response, NIMH made
    no substantive changes to the research goals or objectives in the final
    version released to the public earlier this week.
        The NIMH research goals for 2020-2025 heighten the existing
    imbalance in NIMH research. In doing so, they offer little hope for new
    or better treatments for individuals who are currently afflicted with a
    mental illness during their lifetime, especially a serious mental
    illness. This failure is inexcusable given the large increase in
    research funding given to NIMH in recent years.
        Future NIMH funding must be used to correct the existing imbalance,
    not worsen it, especially now that the COVID-19 pandemic has upended
    the mental health treatment system and will likely result in an
    exacerbation of symptoms in people currently affected and an increase
    in serious mental illnesses among Americans. Those with the most severe
    forms of mental illness deserve to be prioritized.
        Thank you for your consideration of this request.
        Sincerely,

        E. Fuller Torrey, MD, Founder of the Treatment Advocacy Center and
    Associate Director for Research, Stanley Medical Research Institute

        Michael B. Knable, DO, Board President, Treatment Advocacy Center
    and
    Medical Director, Clearview Communities

        John Snook, Executive Director, Treatment Advocacy Center, snookj@
    treatmentadvocacycenter.org
                                     ______

                Prepared Statement of Trust for America's Health
        Trust for America's Health (TFAH) is pleased to submit this
    testimony on the fiscal year 2021 appropriations bill. TFAH is a non-
    profit, non-partisan organization that promotes optimal health for
    every person and community. Right now, communities across the country
    are overwhelmed with responding to the Coronavirus Disease 2019 (COVID-
    19) pandemic, while also responding to long-standing issues like
    chronic diseases, substance misuse and suicide epidemics, health
    disparities, and environmental threats after years of underfunding of
    the public health system. While the United States spends an estimated
    $3.6 trillion annually on health, less than 3 percent of that spending
    is directed toward public health and prevention.\1\ By investing in the
    Centers for Disease Control and Prevention (CDC) and other public
    health programs, we can make critical investments for our public health
    system, which is facing unprecedented challenges. It is important to
    note that TFAH's recommendations are for modest increases to public
    health programs, given congressional budget caps. However, the COVID-19
    pandemic is demonstrating the dire price we are paying for neglecting
    the public health infrastructure and prevention of disease.
    ---------------------------------------------------------------------------
        \1\ The Impact of Chronic Underfunding on America's Public Health
    System: Trends, Risks, and Recommendations, 2020. Washington, DC: Trust
    for America's Health. February, 2020. https://www.tfah.org/report-
    details/publichealthfunding2020/.
    ---------------------------------------------------------------------------
        TFAH believes bold action toward a significant funding increase is
    needed for CDC, state, territorial, tribal, and local public health
    programs. Health departments are responding to COVID-19 using archaic
    surveillance methods, such as paper and fax,\2,3\ and with depleted
    workforce \4\ that are the result of years of insufficient funding.
    TFAH's most recent report, The Impact of Chronic Underfunding on
    America's Public Health System, finds that health threats are
    increasing, while public health budgets remain stagnant.\5\ Given the
    devastation of COVID-19 on communities' health, as well as state and
    local budgets, we urge Congress to work toward long-term, sustainable
    investments in health departments' infrastructure and workforce. Public
    health experts have estimated a $4.5 billion annual shortfall for
    state, territorial, tribal, and local public health infrastructure.\6\
    Such an investment would help ensure every community is served by a
    comprehensive public health system.
    ---------------------------------------------------------------------------
        \2\ King, M. Black doctors blast 'woefully anemic' data on minority
    coronavirus cases. Politico. April 20, 2020. https://www.politico.com/
    news/2020/04/20/minority-cases-coronavirus-197203.
        \3\ Written Testimony of Sharon M. Watkins, PhD before House
    Committee on Science, Space and Technology: Hearing on Fighting Flu,
    Saving Lives: Vaccine Science and Innovation. November 20, 2019.
    https://science.house.gov/imo/media/doc/Watkins%20Testimony.pdf.
        \4\ New Workforce Survey: Public Health Turnover Could Pose Threat
    to Community Health. De Beaumont Foundation. January 14, 2019. https://
    www.debeaumont.org/news/2019/new-workforce-survey-public-health-
    turnover-could-pose-threat-to-community-health/.
        \5\ The Impact of Chronic Underfunding of America's Public Health
    System, Trust for America's Health 2020.
        \6\ Developing a Financing System to Support Public Health
    Infrastructure. Public Health Leadership Forum, 2019. https://
    www.resolve.ngo/docs/phlf_developingafinancingsystemtosupport
    publichealth636869439688663025.pdf.
    ---------------------------------------------------------------------------
        In addition, we support the proposal advanced in a letter led by
    former Senators Tom Daschle, Bill Frist and former CDC Director Tom
    Frieden to congressional leadership calling for creation of a Health
    Defense Operations (HDO) budget designation that would exempt certain
    health security budget lines from the Budget Control Act spending
    caps.\7\ Such a designation is needed to get out of the cycle of
    disinvestment in public health, followed by emergency supplemental
    funding, followed again by erosion of funds. Health security is
    national security, so funding for protection of Americans against
    biosecurity threats is critical to our recovery and resilience.
    ---------------------------------------------------------------------------
        \7\ Letter to congressional leadership on Health Defense Operations
    budget designation. May 5, 2020. In preventepidemics.org. https://
    preventepidemics.org/wp-content/uploads/2020/05/Health-Defense-
    Operations-Letter-to-Congress_05.05.20.pdf.
    ---------------------------------------------------------------------------
        For fiscal year 2021, TFAH also urges the Committee to support
    programs within CDC and the Public Health and Social Services Emergency
    Fund (PHSSEF):
        Emergency Preparedness: The COVID-19 outbreak has demonstrated that
    it is not enough to deliver short-term, supplemental funding after a
    disaster occurs; a proper response requires training, plans and systems
    that can only be established with consistent, ongoing funds. The Public
    Health Emergency Preparedness (PHEP) cooperative agreement, the main
    Federal program that ensures health departments protect Americans from
    the effects of health emergencies, is a cornerstone of the nation's
    health security. PHEP grants support 62 state, territory, and local
    grantees to develop core public health capabilities, including in areas
    of public health laboratory testing, health surveillance and
    epidemiology, community resilience, countermeasures and mitigation,
    incident management, and information management. Unfortunately, funding
    for PHEP has been cut by a third since fiscal year 2003. TFAH
    recommends at least $824 million for the PHEP (CDC), the level
    authorized in 2006.
        The pandemic is also demonstrating the impact of failing to invest
    in comprehensive readiness and surge capacity of the healthcare
    delivery system. Funding for the Hospital Preparedness Program (HPP),
    administered by the Assistant Secretary for Preparedness and Response,
    has been cut in half since fiscal year 2003. HPP provides critical
    funding and technical assistance to healthcare coalitions (HCCs) across
    the country to meet the disaster healthcare needs of communities. There
    are 360 HCCs, comprised of public health agencies, hospitals, emergency
    management and others, that develop and implement healthcare and
    medical readiness; healthcare and medical response coordination;
    continuity of healthcare services delivery; and medical surge. TFAH
    recommends at least $474 million for HPP (PHSSEF), the level authorized
    in 2006.
        Environmental Health: To effectively and efficiently address public
    health challenges, data must incorporate environmental impacts on
    health. Since CDC's National Environmental Public Health Tracking
    Network began, grantees have taken over 400 data-driven actions to
    improve health. Data includes asthma, drinking water quality, lead
    poisoning, flood vulnerability, and community design. State and local
    health departments use this data to conduct targeted interventions in
    communities with environmental health concerns. Currently, 25 states
    and one city are funded to participate in the Tracking Network. With a
    $1.44 return in healthcare savings for every dollar invested, the
    Tracking Network is a cost-effective program that examines and combats
    harmful environmental factors.\8\ TFAH recommends at least $40 million
    for National Environmental Public Health Tracking Network (CDC), which
    would enable at least three additional states to join the network.
    ---------------------------------------------------------------------------
        \8\ Return on Investment of Nationwide Health Tracking, Washington,
    DC: Public Health Foundation, 2001.
    ---------------------------------------------------------------------------
        Obesity and Chronic Disease Prevention: In 2017-2018, 42.4 percent
    of adults were obese.\9\ Yet, funding for CDC's obesity prevention
    efforts only equal to about 31 cents per person, even though obesity
    accounts for nearly 21 percent of U.S. healthcare spending.\10\ During
    the COVID-19 pandemic, obesity has been identified as one of the major
    risk factors for severe outcomes.\11\ To adequately address obesity and
    chronic disease, we must invest in preventive and culturally
    appropriate strategies. CDC's Division of Nutrition, Physical Activity
    and Obesity (DNPAO) works to decrease obesity and chronic disease in
    communities across the U.S. DNPAO supports healthy eating, active
    living, and obesity prevention by creating healthy child care centers,
    hospitals, schools, and worksites; building capacity of state health
    departments and national organizations; and, conducting research,
    surveillance and evaluation studies. DNPAO's new initiative, Active
    People, Healthy Nation, aims to help 27 million Americans become more
    physically active by 2027. DNPAO only has enough money to implement its
    State Physical Activity and Nutrition Programs (SPAN) in 16 states.
    TFAH recommends at least $125 million for DNPAO (CDC) to fund every
    state for its SPAN work and continue implementing Active People,
    Healthy Nation strategies.
    ---------------------------------------------------------------------------
        \9\ Hales CM et al. Prevalence of Obesity and Severe Obesity Among
    Adults: United States, 2017-2018. NCHS Data Brief No. 360, Feb 2020.
    https://www.cdc.gov/nchs/data/databriefs/db360-h.pdf.
        \10\ J. Cawley and C. Meyerhoefer, ``The Medical Care Costs of
    Obesity: An Instrumental Variables Approach,'' Journal of Health
    Economics 31, no. 1 (2012): 219-30, doi: 10.1016/
    j.jhealeco.2011.10.003.
        \11\ Coronavirus Disease 2019 (COVID-19): Groups at Higher Risk for
    Severe Illness.
    CDC, 2020. https://www.cdc.gov/coronavirus/2019-ncov/need-extra-
    precautions/groups-at-higher-risk.html.
    ---------------------------------------------------------------------------
        Additionally, the Racial and Ethnic Approaches to Community Health
    (REACH) program, within DNPAO, works in 31 communities across the
    country. It supports innovative, community-based approaches to develop
    and implement evidence-based practices, empower communities, and reduce
    racial and ethnic health disparities. As we are seeing the affect that
    underlying health disparities are having on COVID-19 patients, we urge
    renewed investment in programs such as REACH that promote health
    equity. TFAH recommends at least $76.95 million for REACH (CDC) to
    restore funds historically diverted from core REACH programs.
        Healthy Outcomes in Schools: CDC's Division of Adolescent and
    School Health (DASH) provides evidence-based health promotion and
    disease prevention education for less than $10 per student. Through
    school-based surveillance, data collection, and skills development,
    DASH collaborates with state and local education agencies to increase
    health surveillance and services, promote protective factors, and
    reduce risky behaviors. DASH programs reach approximately 2 million of
    the 26 million middle and high school students. TFAH recommends at
    least $100 million for DASH (CDC) to expand its work to 20 percent of
    all middle and high school students.
        Substance Use Epidemic: Substance misuse is a public health
    epidemic experienced by too many communities across the country. From
    2009-2018, 530,893 Americans have died from drug- related causes.\12\
    Increased funding and flexibility for the Opioid Overdose Prevention
    and Surveillance program at CDC would expand prescription drug
    monitoring programs and surveillance; strengthen evidence-based
    prevention efforts; and strengthen CDC's surveillance systems to
    translate data into action by educating consumers and equipping health
    departments with resources to promote prevention. We urge you to
    prioritize primary prevention of substance misuse and to allow
    flexibility to broadly prevent substance misuse, not solely opioid
    misuse. TFAH recommends at least $650 million for Opioid Overdose
    Prevention and Surveillance (CDC) to expand and support innovative
    prevention activities in states.
    ---------------------------------------------------------------------------
        \12\ WONDER Data, CDC. https://wonder.cdc.gov/.
    ---------------------------------------------------------------------------
        New Initiative: Age-Friendly Public Health: Every day 10,000
    Americans turn 65 years of age, yet there have been limited
    collaborations between the public health and aging sectors. The COVID-
    19 outbreak shows how vital this collaboration could be. Public health
    interventions play a valuable role in optimizing the health and well-
    being of older adults by prolonging their independence, reducing their
    use of expensive healthcare services, coordinating existing multi-
    sector efforts and identifying gap areas, as well as disseminating and
    implementing evidence-based policies. We recommend the Committee fund a
    program to administer and evaluate a healthy aging grant program to
    support state and local health departments to promote and address the
    public health needs of older adults, and collaborate with partners in
    the aging sector. TFAH recommends at least $50 million to develop Age-
    Friendly Public Health at CDC and support grants to states and
    localities.
        New Initiative: Social Determinants of Health: Social and economic
    conditions such as housing, employment, food security, and education
    have a major influence on individual and community health.\13\ These
    Social Determinants of Health (SDOH) are receiving increased attention.
    Public health departments are uniquely situated to build these
    collaborations across sectors, identify SDOH priorities in communities,
    and help identify strategies that promote health. Currently most public
    health departments lack funding and tools to support such cross-sector
    efforts and are limited by disease-specific Federal funding. We
    recommend the Committee fund CDC to support local and state public
    health agencies to convene across sectors, gather data, identify
    priorities, establish plans, and take steps to address unmet non-
    medical social needs. Recently, Rep. Nanette Diaz Barragan introduced a
    bill, the Improving Social Determinants of Health Act (H.R. 6561) that
    would authorize such a program, with endorsements from nearly 160
    organizations.\14\ TFAH recommends at least $50 million to develop a
    Social Determinants of Health Program (CDC) and enable grants to states
    and localities.
    ---------------------------------------------------------------------------
        \13\ Taylor, L et.al, ``Leveraging the Social Determinants of
    Health: What Works?'' Yale Global Health Leadership Institute and the
    Blue Cross and Blue Shield Foundation of Massachusetts, June 2015.
        \14\ The Improving Social Determinants of Health Act of 2020 (H.R.
    6561) Background. In Trust for America's Health. https://www.tfah.org/
    wp-content/uploads/2020/05/SDOH-bill-fact-sheet.pdf.
    ---------------------------------------------------------------------------
        Conclusion: TFAH appreciates the opportunity to present this
    testimony to the Committee. By restoring previous budget cuts and
    expanding prevention activities, we will reinforce our ability to
    protect and improve the lives of communities nationwide. Thank you.

        [This statement was submitted by John Auerbach, President & CEO,
    Trust for America's Health.]
                                     ______

        Prepared Statement of the U.S. Hereditary Angioedema Association
                  summary of fiscal year 2021 recommendations
    _______________________________________________________________________

      --Provide the National Institutes of Health (NIH) with at least a $3
            billion increase in discretionary funding for fiscal year 2021
            to bring overall agency funding up to a minimum of $44.7
            billion annually.
        --Continue to encourage advancement and expansion of the hereditary
                angioedema research portfolio at NIH (including advancing
                treatment options and diagnostic tools for HAE with normal
                C1-Inhibitor), as well as research efforts focused on rare
                conditions more broadly, through timely committee
                recommendations.
        --Please provide proportional funding increases for NIH's various
                Institutes and Centers, most notably; the National
                Institute of Allergy and Infectious Diseases (NIAID), the
                National Centers for Advancing Translational Sciences
                (NCATS), and the National Heart, Lung, and Blood Institute
                (NHLBI)
      --Provide the Centers for Disease Control and Prevention (CDC) with
            at least a $600 million increase in discretionary funding for
            fiscal year 2021 to bring overall agency funding up to a
            minimum of $8.3 billion annually.
      --Encourage the Centers for Medicare and Medicaid Services (CMS) to
            prevent discrimination in health coverage by ensuring rare
            disease patients do not face arbitrary restrictions when
            seeking charitable assistance to maintain access to life-
            sustaining care and therapy and to prevent from being steered
            into Federal need-based and illness-based programs that they
            would not otherwise qualify for while properly managing their
            illness (building on committee recommendations included in the
            Committee Report accompanying the fiscal year 2020 House LHHS
            Appropriations Bill).
    _______________________________________________________________________

        Chairman Blunt, Ranking Member Murray, and distinguished members of
    the subcommittee, thank you for the opportunity to present the views of
    the U.S. Hereditary Angioedema Association (U.S. HAEA) on funding and
    related policy items for NIH, CDC, and CMS during consideration of
    appropriations for fiscal year 2021. First and foremost, thank you for
    supporting these programs in fiscal year 2020. It is our hope that this
    invest will continue for fiscal year 2021 to ensure that meaningful
    progress can continue in specific, promising areas.
                                about u.s. haea
        U.S. HAEA is a patient-driven organization comprised of affected
    individuals and their families. In this regard, we would primarily like
    to recognize this Subcommittee for its leadership and commitment to
    providing medical research and public health programs with notable
    funding increases for fiscal year 2020. This investment will have a
    tangible positive impact for patients by significantly improving
    scientific inquiry and public health activities.
        U.S. HAEA is a non-profit patient advocacy organization dedicated
    to serving the estimated 6,000 HAE sufferers in the U.S. We provide a
    support network and a wide range of personalized services for patients
    and their families. We are also committed to advancing clinical
    research designed to improve the lives of HAE patients and ultimately
    find a cure.
                          about hereditary angioedema
        Hereditary angioedema (HAE) is a painful, disfiguring,
    debilitating, and potentially fatal genetic disease that occurs in
    about 1 in 30,000 people. Symptoms include episodes of swelling in
    various body parts including the hands, feet, face and airway. Patients
    often have bouts of excruciating abdominal pain, nausea and vomiting
    that is caused by swelling in the intestinal wall. The majority of HAE
    patients experience their first attack during childhood or adolescence.
    Approximately one-third of undiagnosed HAE patients are subject to
    unnecessary exploratory abdominal surgery. About 50 percent of patients
    with HAE will experience laryngeal edema at some point in their life.
    This swelling is exceedingly dangerous because it can lead to death by
    asphyxiation. The historical mortality rate due to laryngeal swelling
    is 30 percent.
                            a research success story
        There was a time not long ago that HAE was a debilitating, and
    often life-ending, chronic disease. In addition to the serious health
    impacts, affected individuals suffered with trauma, anxiety, and PTSD
    stemming from torturous attacks (and the uncertainty of when the next
    attack might occur). Due to advancements in medical research, HAE
    patients now have access to life-altering and life-sustaining
    medications. Properly medically managing the disease now allows many
    the freedom to work productively, live independently, and thrive.
        While we are appreciative of the scientific progress, much more can
    be done. There is no cure of HAE and treatment is highly
    individualized. More needs to be learned about the underlying disease
    mechanisms and successful treatment often involves personalized care
    and a customized treatment regimen prepared (using trial and error) by
    a leading physician expert.
        NIH has a modest, but meaningful HAE research portfolio. Recent
    annual investments will facilitate growth in this portfolio and have
    led to important new scientific projects. The ongoing research at NIH
    (and complimentary research through the Department of Defense Peer-
    Reviewed Medical Research Program) will lead to a time when HAE
    patients can move beyond their disease. However, a key question that
    remains is how much of this investment is going to rare and ultra-rare
    disease research programs, particularly in-light of the ``big ticket''
    items that are often now the focus of annual research appropriations.
              the importance of proper health coverage and access
        The HAE community first became aware of the fact that the Centers
    for Medicare and Medicaid Services (CMS) had allowed private insurers
    offering marketplace plans to deny coverage to individuals receiving
    charitable assistance in 2015 when more than a dozen HAE patients in
    Louisiana received notices that their coverage was being cancelled due
    to the fact someone else had helped them pay their premiums. Since that
    time, the practice has become pervasive and HAE patients are regularly
    informed that they will lose coverage if they receive any charitable
    assistance, that they may be committing fraud, and that they may face
    legal action if they accept assistance. This dynamic has effectively
    become a back door to pre-existing condition discrimination that is
    implemented to steer HAE patients into tax-payer funded healthcare.
    Moreover, the threat now stretches beyond just marketplace plans (to
    Medigap plans and COBRA) due to the inability to address this issue
    when it first began jeopardizing health for patients with no
    alternatives.
        Many HAE patients properly manage their illness when they have
    proper access to healthcare and treatment. HAE patients would typically
    not qualify for need-based or health-based government programs due to
    the life-sustaining nature of their treatment. If, however, proper
    coverage is lost, an HAE patient may have to endure a life-threatening
    experience of waiting while they spend down to qualify for Medicaid or
    become sick enough to apply for disability.
        US HAEA has joined with other patient-driven organizations
    experiencing the harm of current pre-existing condition discrimination
    facilitated by barriers to charitable assistance and the related
    practice of a restrictive co-pay accumulator to form the ad hoc group,
    United for Charitable Assistance (UCA). We join with UCA and all
    stakeholders in asking this subcommittee to once again highlight these
    rare-disease challenges for CMS and request the current barriers are
    resolved to protect patients that have no other reasonable options to
    maintain coverage.
        We thank the Subcommittee for including meaningful language through
    the fiscal year 2020 appropriations process asking CMS to show
    leadership in addressing these barriers. We hope Congress will continue
    to work with patient stakeholders to end coverage scrutiny and payment
    discrimination moving forward.

        [This statement was submitted by Anthony J. Castaldo, President and
    CEO,
    U.S. Hereditary Angioedema Association.]
                                     ______

         Prepared Statement of the United States Workforce Associations
        Dear Chairman Blunt and Ranking Member Murray:
        The undersigned organizations make up the United States Workforce
    Association (USWA), a collaborative effort of local workforce boards,
    businesses, educational institutions, and organizations involved in
    workforce and economic development activities across the country. These
    organizations are directly involved in the implementation of the
    bipartisan Workforce Innovation and Opportunity Act (WIOA) of 2014,
    specifically promoting the successful execution by local workforce
    boards of the law to serve businesses, employers, and job--and career-
    seekers. With the country facing unprecedented demand for unemployment
    insurance and possible economic recession within the COVID-19 outbreak,
    the employer-led, local workforce development system must have the
    Federal resources necessary to provide businesses with talent to begin
    the recovery. Adequate Federal funding would ensure the system is
    poised to address these community needs.
        As the Senate Appropriations Committee considers the fiscal year
    2021 Labor-HHS Appropriations Bill, we urge you to support further
    Federal investment into WIOA and fully fund the law beyond its fiscal
    year 2020 authorized levels. Appropriated levels have fallen short of
    authorized levels specifically in Title I accounts at the Department of
    Labor (Adult Employment and Training Services, Youth Workforce
    Investment Activities, and Dislocated Worker Employment and Training
    Services). An expanded Federal investment across WIOA programs leads to
    more job training, education, skills development and innovative, proven
    practices like industry-based sector partnerships, career pathways, and
    apprenticeships. These strategies will need to be implemented
    seamlessly following the COVID-19 outbreak.
        As our country grapples with the response to COVID-19, local
    leaders are engaged directly with businesses to help keep individuals
    employed. We are also working with the mass waves of unemployed
    individuals to help them stay connected to the workforce and evaluate
    other opportunities if they have been laid off. Emergency
    appropriations are greatly needed to address this unprecedented health,
    economic, and social destabilization but an increased Federal
    investment will also address these funding concerns.
        The fiscal year 2021 Labor, Health and Human Services, Education,
    and Related Agencies Appropriations bill must fully fund all Titles I,
    II, III, and IV at a minimum to the level authorized by the Workforce
    Innovation and Opportunity Act (WIOA).
        The funding levels we are requesting in the fiscal year 2021 Labor,
    HHS, Education Appropriations Bill are listed below:
    Title I--Department of Labor
      --At least $899.987 million for Adult Employment and Training
            Services,
      --At least $963.837 million for Youth Workforce Investment
            Activities, and
      --At least $1.436 billion for Dislocated Worker Employment and
            Training Services
    Title II--Department of Education
      --$678.640 million for Adult Education
    Title III--Department of Labor
      --$667,000,000 for Wagner-Peyser (fiscal year 2020 Enacted)
    Title IV--Department of Education
      --$3,610,040,000 for Vocational Rehabilitation Services (fiscal year
            2020 Enacted)
            fiscal year 2021 administration budget proposal language
        We also wanted to highlight concerning language contained in the
    fiscal year 2021 Department of Labor Budget Proposal that would give
    Governors more authority to re-designate and consolidate local
    workforce boards. The budget proposal language would waive protections
    given to local control by circumventing Section 106 of the Workforce
    Innovation and Opportunity Act (WIOA). Congress recognized that local
    economic conditions are best addressed at the local level when WIOA was
    passed in 2014. That local control is critical when dealing with
    employers and other stakeholders as we can address economic issues with
    flexible resources and innovative solutions. We oppose the language
    included in the budget and encourage you to further support local
    control within the Federal workforce system.
        This training, support and business partnership is vital to our
    country's economic prosperity. For further information, please contact
    Chris Andresen.
        Sincerely.

                                     ______

                           Prepared Statement of VOR
        Thank you for the opportunity to provide outside witness testimony
    for the record to the Senate Appropriations, Subcommittee on Labor,
    HHS, Education, and Related Agencies regarding the fiscal year 2021
    Budget for the Department of Health and Human Services (DHHS). This
    testimony does not include any funding request.
        VOR submits this testimony as a request for language in the fiscal
    year 2021 Labor, HHS, Education and Related Agencies appropriations
    bill \1\ that:
    ---------------------------------------------------------------------------
        \1\ Submitted in March 26, 2020 email from Caroline Lahrmann to
    Senator Blunt's staff, Dan Burgess and Caitlin Wilson.
    ---------------------------------------------------------------------------
      --Expressly prohibits the use of appropriations by a Protection and
            Advocacy (P&A) System to bring a lawsuit against a Medicaid
            licensed and certified intermediate care facility for
            individuals with intellectual disabilities (ICF/IID), unless
            the affected individuals and their legal guardians have been
            provided reasonable notice of the lawsuit.
      --Expressly prohibits states from using Money Follows the Person
            (MFP) funds or the resulting Federal Matching Assistance
            Percentages (FMAP) to override beneficiary choice and be used
            by a state to finance and abet the closure of an ICF/IID home
            and the resulting transfer of its residents, or to incentivize
            private providers to close or reduce the number of beds in
            their ICF/IID facilities.
                                  introduction
        VOR is a national nonprofit organization advocating for high
    quality care in a full continuum of residential options and human
    rights for all people with intellectual and developmental disabilities
    (I/DD).
        It has been twenty years since the Developmental Disabilities
    Assistance and Bill of Rights Act (DD Act) was last reauthorized.
    During that time, the Administration for Community Living (ACL) through
    its agency, the Administration on Intellectual and Developmental
    Disabilities (AIDD), and their state-based DD Act programs, especially
    Protection & Advocacy (P&A) Systems for Individuals with Developmental
    Disabilities, have engaged in activities designed to close intermediate
    care facilities for individuals with intellectual disabilities (ICFs/
    IID). This activity has occurred against the wishes of the vast
    majority of legal guardians of the residents, disregarding the plain
    language of the Americans with Disabilities Act (ADA) and the Supreme
    Court's Olmstead decision. Too often the consequences have been
    disastrous for the residents, resulting in abuse, neglect and even
    death. Since the last DD Act reauthorization expired 13 years ago,
    these programs have been able to continue to ignore the DD Act and the
    Supreme Court only through the appropriations process. To remedy this
    problem VOR makes the above referenced language requests for the Labor,
    HHS Appropriations Bill and Report.
      the olmstead decision, medicaid law, and the dd act protect choice
                                 based on need
        HHS-funded P&A Systems cite the landmark U.S. Supreme Court
    decision, Olmstead v L.C. (1999) \2\ as justification for their
    position to close HHS-funded ICF/IID homes. These Federal agencies
    misrepresent and misapply the Olmstead decision's requirements. The
    Supreme Court is clear in its holding that the ADA requires individual
    choice before community placement can be imposed and recognizes the
    need for specialized care:
    ---------------------------------------------------------------------------
        \2\ The full Supreme Court Ruling in Olmstead is available for
    download at: https://
    supreme.justia.com/cases/Federal/us/527/581/.

        ``We emphasize that nothing in the ADA or its implementing
            regulations condones termination of institutional settings for
            persons unable to handle or benefit from community settings...
            Nor is there any Federal requirement that community-based
            treatment be imposed on patients who do not desire it.''
    ---------------------------------------------------------------------------
            [Olmstead v. L.C. 527 U.S. 581, 601-602 (1999)]

        ``As already observed (by the majority), the ADA is not reasonably
            read to impel States to phase out institutions, placing
            patients in need of close care at risk... `Each disabled person
            is entitled to treatment in the most integrated setting
            possible for that person--recognizing on a case-by-case basis,
            that setting may be an institution.' '' [Olmstead, 605]
            (quoting VOR's Amici Curiae brief) \3\
    ---------------------------------------------------------------------------
        \3\ https://www.vor.net/legislative-voice/legislator-toolkit/dd-
    act-reauthorization/item/
    vor-olmstead-amicus-brief.
    ---------------------------------------------------------------------------
        Likewise, Medicaid law and regulations require that ICF/IID
    residents be ``[g]iven the choice of either institutional or home and
    community-based services.'' [42 C.F.R. Sec. 441.302(d)(2); see also, 42
    U.S.C.Sec. 1396n(c)(2)(C)]
        The DD Act,\4\ which authorizes funding for P&A Systems, supports
    residential choice and recognizes that individuals and their families
    are in the best position to make care decisions:
    ---------------------------------------------------------------------------
        \4\ The DD Act is available for download at: https://acl.gov/sites/
    default/files/about-acl/2016-12/dd_act_2000.pdf.
    ---------------------------------------------------------------------------
        ``Individuals with developmental disabilities and their families
    are the primary decisionmakers regarding the services and supports such
    individuals and their families receive, including regarding choosing
    where the individuals live from available options, and play
    decisionmaking roles in policies and programs that affect the lives of
    such individuals and their families.'' [DD Act, 42 U.S.C.
    15001(c)(3)(2000)]
                  protection & advocacy class action lawsuits
        Protection & Advocacy (P&A) Systems are a DD Act program charged to
    protect and advocate the rights of individuals with developmental
    disabilities. [42 U.S.C. Sec. 10543] Lawsuits have been a favorite tool
    of P&As. P&As have filed more than 15 class action lawsuits seeking
    closure (not relating to conditions of care) over the objections of
    residents and their families.
        In 2014, for example, Disability Rights Ohio (DRO), the State's
    P&A, cited Olmstead when it threatened \5\ and later filed a class
    action against Ohio's ICF/IID program over the widespread objections of
    ICF/IID families. Families filed over 21,000 hardcopy petition
    signatures with the Ohio General Assembly objecting to DRO's threats
    and policy proposals, including closing and downsizing ICF/IID
    facilities. The threat of litigation alone led to the closing of two
    state-run ICFs/IID and hundreds of private ICF/IID beds. Despite state
    concessions, DRO still filed a class action on March 31, 2016 against
    the state without notifying families of individuals who DRO sought to
    include as class members. Eventually, ICF/IID families who learned of
    the suit intervened in the action. The Court ordered ICF/IID families'
    intervention and eventually dramatically narrowed the class to protect
    the interests of ICF/IID residents and those individuals who may want
    an ICF/IID placement in the future. In its Order on intervention, the
    Court noted that the rights of ICF/IID residents in the litigation
    ``were not protected until the Guardians filed their Motion to
    Intervene.'' (Ball v. Kasich 2:16-cv-282, Opinion and Order, July 25,
    2017, Doc #261, pp 17-18.) The Court's statement highlights the
    importance of VOR's language request, to provide notice to families of
    P&A litigation so that they can act to protect the rights of their
    severely disabled loved ones.
    ---------------------------------------------------------------------------
        \5\ July 1, 2014 DRO letter to state of Ohio: https://www.vor.net/
    images/stories/pdf/DROLetterGovernorKasich.pdf.
    ---------------------------------------------------------------------------
                            money follows the person
        MFP was passed in 2005 as part of the Deficit Reduction Act, the
    primary goal being to rebalance state service systems toward home and
    community-based services (HCBS), rather than institutional care.\6\ For
    the I/DD population, this goal has been accomplished. Today, Home &
    Community Based Services (HCBS) represent approximately 54 percent of
    the total Federal Medicaid I/DD budget; ICFs/IID represent only 17
    percent.\7\ As the goal of the program has been realized, MFP has now
    become hijacked by ideological extremists as a means to close all
    institutional care for individuals with I/DD. In December 2019, the CEO
    of the ARC stated, ``We applaud elected officials who understand the
    value of MFP, core to our mission to advance community living and close
    all institutions.'' \8\ (Emphasis added.) P&As play a key role in this
    effort, creating the environment for litigation-wary states to close
    ICFs/IID. Then, MFP furthers states' ability to implement the resulting
    closings. As such, a program that expressly honored choice \9\
    consistent with Olmstead, has lost its way and is being misused to
    override the choice of I/DD beneficiaries to their life-sustaining ICF/
    IID homes. VOR families have experienced states' misuse of MFP in two
    ways: (1) Using MFP and its enhanced FMAP to help finance whole
    closures of state-run ICFs/IID and the resulting transfers of
    residents; (2) Using MFP's enhanced FMAP to incentivize private
    providers to close their ICFs/IID and transfer residents with MFP
    funds. Here are a few examples:
    ---------------------------------------------------------------------------
        \6\ Public Law 109-171 Sec. 6071(a)(1).
        \7\ https://stateofthestates.org/wp-content/uploads/documents/
    UnitedStates.pdf.
        \8\ https://thearc.org/huge-victory-for-community-living-for-
    people-with-disabilities-agreement-in-congress-to-commit-to-money-
    follows-the-person-program/.
        \9\ Public Law 109-171 Sec. 6071 (a)(2).
    ---------------------------------------------------------------------------
        Ohio: MFP was used to help finance closings of two state-run ICFs/
    IID in 2015 affecting about 200 persons; families passionately opposed
    the closures in the state legislature. MFP's enhanced FMAP was used to
    financially incentivize private providers to close ICFs/IID and
    transfer residents.
        Pennsylvania: In 2017, MFP was used to help finance the closing of
    Hamburg, a state-run ICF/IID, affecting 74 residents. Closures of two
    more state centers were announced in 2019. Families of the centers have
    filed a Federal lawsuit to halt these closures.
        Virginia: Deaths increased by 70% \10\ when the state closed
    several of its Training Centers (state run ICFs/IID) in response to DOJ
    litigation. Four of five centers closed, affecting approximately 1,000
    residents. Families opposed the closures by intervening in the
    litigation to protect their loved ones' interests. MFP was used to help
    transfer displaced residents to community settings.
    ---------------------------------------------------------------------------
        \10\ Robert Anthony, PhD. Study of Mortality Rates Connected to
    Virginia Training Centers
    Closures: https://www.vor.net/get-help/more-resources/item/mortality-
    studies.
    ---------------------------------------------------------------------------
        Illinois: Moved to close two state run ICFs/IID, Jacksonville and
    Murray, in 2012. The Chicago Tribune reported \11\ that an ``auction''
    was held to find new homes for residents of Jacksonville. ``A state
    official read aloud medical histories of residents...prompting group
    home officials to raise their hands for desired picks.'' Beneficiary
    choice was not considered when making the decision to close the
    centers. In fact, families of Murray filed a Federal lawsuit to halt
    the closing of Murray and were successful in keeping Murray open. The
    Tribune reported that state officials promised an independent and safe
    life for residents in community settings, ``but those promises obscured
    evidence found in the state's own investigative files that revealed
    many group homes were underfunded, understaffed and dangerously
    unprepared for the new arrivals with complex needs.''
    ---------------------------------------------------------------------------
        \11\ https://www.chicagotribune.com/investigations/ct-group-home-
    investigations-cila-met-2016
    1229-htmlstory.html.
    ---------------------------------------------------------------------------
       deinstitutionalization efforts persist despite widespread abuse,
                               neglect, & deaths
        ACL/AIDD and their state-based programs persist in their
    ideological devotion to community placement despite reports:
      --of an extraordinary death rate of nearly 16 percent in Georgia \12\
    ---------------------------------------------------------------------------
        \12\ Augusta Chronicle, August 26, 2019 https://
    www.augustachronicle.com/news/20190826/
    report-deaths-lack-of-housing-plague-georgia-system-for-disabled-
    mentally-ill.
    ---------------------------------------------------------------------------
      --deaths increased by 70 percent for individuals moved from ICFs/IID
            to the community in Virginia \13\
    ---------------------------------------------------------------------------
        \13\ Robert Anthony, PhD. Op Cit.
    ---------------------------------------------------------------------------
      --1,200 ``unnatural and unknown'' deaths in New York \14\
    ---------------------------------------------------------------------------
        \14\ New York Times series, Abused and Used, 2011-2012 http://
    archive.nytimes.com/www.nytimes.com/interactive/nyregion/abused-and-
    used-series-page.html.
    ---------------------------------------------------------------------------
      --a risk of mortality in community settings of up to 88 percent in
            California \15\
    ---------------------------------------------------------------------------
        \15\ Mortality of Persons With Developmental Disabilities After
    Transfer Into Community Care: A 1996 Update, Robert Shavell and David
    Strauss https://www.ncbi.nlm.nih.gov/pubmed/10207577.
    ---------------------------------------------------------------------------
      --more than 100 deaths in Connecticut \16\
    ---------------------------------------------------------------------------
        \16\ Abuse, Neglect Cited As Factors In Deaths Of Dozens of
    Developmentally Disabled
    In State Care https://www.courant.com/news/connecticut/group-home-
    deaths/hc-dds-deaths-0303-
    20130302-story.html.
    ---------------------------------------------------------------------------
      --hundreds of deaths in the District of Columbia \17\
    ---------------------------------------------------------------------------
        \17\ ``Invisible Lives: Residents Languish; Profiteers Flourish,''
    March 15, 1999, https://www.washingtonpost.com/wp-srv/local/daily/
    march99/grouphome15_full.htm; and ``Invisible Deaths,'' December 5,
    1999, https://www.washingtonpost.com/wp-srv/local/invisible/
    deaths5.htm.
    ---------------------------------------------------------------------------
      --a Chicago Tribune series on widespread abuse and neglect in
            Illinois' community system \18\
    ---------------------------------------------------------------------------
        \18\ Chicago Tribune, ``Suffering in Secret,'' three-part series
    beginning November 2016 https://www.chicagotribune.com/investigations/
    ct-group-home-investigations-cila-met-20161117-htmlstory.html.
    ---------------------------------------------------------------------------
        plus many more reports of abuse, neglect and death across the
    majority of all states.\19\ Sadly, such results, when beneficiary
    choice and need are overridden, are not surprising.
    ---------------------------------------------------------------------------
        \19\ VOR Abuse and Neglect Document https://www.vor.net/get-help/
    more-resources.
    ---------------------------------------------------------------------------
                            conclusion and solution
        Reauthorization of the DD Act is the appropriate place for a
    comprehensive review of HHS activities to determine if the programs
    they fund, such as P&A Systems, are operating within the letter and
    spirit of relevant law. As the DD Act programs continue to be funded
    through the appropriations process, VOR believes it is necessary and
    proper to require the programs to take actions to protect
    beneficiaries' rights.
        VOR's requests build on previous actions by this Committee. In
    fiscal year 2016, 2018, and 2019, the Omnibus Appropriations Act
    required that P&As provide affected individuals and their families with
    notice of any class action that a P&A would initiate on their behalf.
    We request that the Committee continue this requirement. The fiscal
    year 2016 appropriations also included language that ``strongly urged
    [HHS] to continue to factor the needs and desire of patients, their
    families, caregivers, and other stakeholders, as well as the need to
    provide proper settings for care, into its enforcement of the
    Developmental Disabilities Act.'' Nearly identical language was also
    included in the fiscal year 2017 Commerce, Justice Appropriations. VOR
    is unaware that HHS followed the laws and requests the Committee to
    require HHS to submit reports to Congress with respect to each of these
    areas so the Congress can start the process of determining whether and/
    or how HHS is meeting its obligations to respect the right of choice
    and make sure proper care is provided for those who leave ICFs/IID.

        [This statement was submitted by Hugo Dwyer, Executive Director,
    VOR.]
                                     ______

            Prepared Statement of the Western Governors' Association
        Chairman Blunt, Ranking Member Murray, and Members of the
    Subcommittee, the Western Governors' Association (WGA) appreciates the
    opportunity to provide written testimony on the appropriations and
    activities of the Federal agencies under the Subcommittee's
    jurisdiction, including the Departments of Labor (DOL), Health and
    Human Services (HHS), and Education (ED). WGA is an independent
    organization representing the Governors of the 22 westernmost states
    and territories. The Association is an instrument of the Governors for
    bipartisan policy development, information-sharing and collective
    action on issues of critical importance to the western United States.
        Western states are aligning education to workforce needs in an
    effort to create economic opportunities for westerners and support
    growing economies. DOL and ED programs have a significant effect on how
    states address challenges related to skills gaps, unemployment and
    educational attainment. Western Governors understand the importance of
    working closely with the Federal Government to ensure that Federal and
    state investments in education and employment training support shared
    goals.
        Career and technical education (CTE) provides students with
    opportunities to explore careers and participate in programs of study
    designed around specific professions. CTE programs are funded through
    the Carl D. Perkins Career and Technical Education Act (Perkins Act).
    States distribute Perkins Act funds to school districts, community or
    technical colleges, and other local recipients. Western Governors
    encourage Congress to recognize that Governors and states are in the
    best position to determine how to use Federal CTE funding to meet the
    needs of their economies. Adequate funding of Perkins State Grants is
    essential to ensure that CTE programs align with statewide visions for
    education and workforce development.
        Western Governors understand the importance of work-based learning
    programs to help jobseekers obtain experience and training for in-
    demand occupations while earning money. Western Governors support the
    expansion of work-based learning programs, including federally
    registered apprenticeship programs. These are important tools to
    address skills gaps in specific sectors in western states. While
    apprenticeships have been traditionally used in the building trades,
    western states are leading the way in expanding registered
    apprenticeship opportunities to new sectors, including healthcare and
    information technology. Western Governors encourage Congress to support
    and incentivize state-, local-, and industry-led partnerships to create
    and scale apprenticeship programs through increased appropriations. New
    Federal investments in apprenticeships should align with existing
    efforts to foster a coherent system with minimal duplication at the
    Federal, state and local levels.
        DOL funding for workforce development through the Workforce
    Innovation and Opportunity Act (WIOA) supports economic growth and job
    creation in the states. Western Governors request that the 15 percent
    reserve for statewide activities be maintained in appropriations under
    WIOA. This funding allows Governors to be flexible and innovative in
    addressing state needs.
        Expanding education and training programs for cybersecurity is
    especially important to Western Governors. A skilled cyber workforce is
    imperative to protect critical infrastructure, which includes a vast
    array of potential targets. These include: the nation's electric grid;
    energy resource supply and delivery chains; finance, communications,
    and election systems; and a panoply of public, private, military and
    industrial systems.
        Despite efforts by Western Governors to address the shortage of
    qualified healthcare workers in our states, significant challenges
    remain. Governors urge the Federal Government to examine and implement
    programs to ensure states have an adequate healthcare workforce--
    including positions in primary care, behavioral and oral health as well
    as other in-demand specialties--prepared to serve diverse populations
    in urban, suburban and rural communities. Understanding that
    significant disparities remain in access and treatment for many
    populations, Governors support efforts to increase the diversity of the
    healthcare workforce to improve health outcomes for all.
        Western Governors also support efforts to improve the quality and
    quantity of behavioral health services, as these are essential to
    reducing suicide rates and treating a range of behavioral health
    conditions, including substance use disorder. The ten states with the
    highest suicide rates in the nation are all in the West. Western states
    are also among those with the highest overall rates of substance use
    disorder, especially for youth between the ages of 12-17. Western
    Governors recognize and support efforts at the Federal, state and local
    levels to promote the integration of physical and behavioral health
    services. The Governors encourage Congress and the Administration to
    support states' integration efforts and encourage healthcare providers
    to better incorporate behavioral and physical medicine into their
    practice of care.
        Western Governors recognize that it is an enormous challenge to
    judiciously balance competing funding needs throughout the Federal
    Government, and appreciate the difficulty of the decisions this
    Subcommittee must make. The foregoing recommendations are offered in a
    spirit of cooperation and respect. WGA is prepared to assist you as the
    Subcommittee discharges its critical and challenging responsibilities.

        [This statement was submitted by James D. Ogsbury, Executive
    Director, Western Governors' Association.]
                                     ______

            Prepared Statement of the Women First Research Coalition
        The members of the Women First Research Coalition (WFRC) thank the
    Subcommittee on Labor, Health and Human Services, and Education, and
    Related Agencies for the opportunity to submit the following outside
    witness testimony for the fiscal year 2021 appropriations in support of
    increasing the amount of women's health research conducted by the
    National Institutes of Health (NIH). To support and facilitate research
    in women's health at the NIH, we ask that you consider our report
    language on ``Women's Health Research Priorities.'' Additionally, we
    ask that you consider adding emergency provisions to fund research at
    NIH related to COVID-19, including projects that examine the virus as
    it relates to conditions only or predominantly occurring in women.
        WFRC is a coalition comprised of the nation's leading professional
    medical and research organizations specializing in women's health. Our
    coalition was formed to address pressing challenges in women's health
    research and we are dedicated to raising awareness among Federal
    policymakers, Executive Branch officials and the public about the need
    for sustained and strengthened investment in women's health research,
    the prioritization of research in conditions that are specific to women
    or those conditions that may present differently in women than men,
    advance an equitable and appropriate investment in women's health
    research that improves the health outcomes of women, and ensure an
    adequate women's research workforce.
    Prioritize Women's Health Research at the NIH
        The NIH has made significant advances in understanding how sex and
    gender differences influence certain diseases and conditions as women
    now account for roughly half of all participants in NIH-sponsored
    clinical trials.\1\ However, there remain significant gaps in our
    understanding of women's unique health conditions despite women
    accounting for over half of the United States population.
    Unfortunately, the implications of these gaps are clear: our country is
    currently in the midst of a maternal mortality crisis; cervical cancer
    survival rates have stagnated since the mid-1970s; vaginal mesh
    procedures that were not studied in clinical trials require regulatory
    action from the FDA; \2\ and there are significant gaps in our
    understanding of women's fertility and hormonal functions.\3,4\
    ---------------------------------------------------------------------------
        \1\ https://orwh.od.nih.gov/sex-gender/nih-policy-sex-biological-
    variable.
        \2\ https://www.fda.gov/medical-devices/implants-and-prosthetics/
    urogynecologic-surgical-mesh-implants.
        \3\ MacDorman MF, Declercq E, Cabral H, Morton C. Recent Increases
    in the U.S. Maternal Mortality Rate: Disentangling Trends From
    Measurement Issues. Obstet Gynecol. 2016;128(3):447-55.
        \4\ Jemal A, Ward EM, Johnson CJ, et al. Annual report to the
    nation on the status of cancer, 284 1975-2014, featuring survival. J
    Natl Cancer Inst. 2017;109.
    ---------------------------------------------------------------------------
        There are a number of examples of areas in women's health research
    where additional study is urgently needed. Those provided here are
    illustrative of the gaps in our understanding of common women's health
    conditions. The benefits of cervical cancer prevention are well known,
    and yet new discovery in this area as well as widespread implementation
    of known approaches to prevention, such as the HPV vaccine, is not
    optimal. Research to help understand barriers to screening programs,
    discover new approaches to screening, and wider implementation of known
    strategies is needed. There also remain large disparities in genetic
    testing, access to care, and other aspects of providing care for women
    with cervical, endometrial, and other gynecologic cancers. Enhancing
    our understanding of these at a much deeper level would help facilitate
    strategies for overcoming disparities.
        Another example--one in three women who have given birth suffer
    from pelvic organ prolapse, a condition that occurs when the pelvic
    floor muscles and connective tissue supporting the pelvic organs
    (bladder, uterus and cervix, vagina, and rectum) weaken or tear and can
    no longer support these organs. Over 50 percent of women aged 65 and
    older suffer from urinary incontinence. More research is needed to
    improve prevention and treatment strategies for these and other
    urogynecologic conditions that affect millions of American women.
        These significant health concerns are increasing at a time when NIH
    funding for women's health research remains disproportionately low,
    particularly for research in obstetrics and gynecology, in comparison
    to other areas of research. It is critical that Federal policymakers
    prioritize funding to support research related to the full range of
    women's health issues. An increased investment in women's health
    research will improve the health outcomes of women and ensure a
    sufficient workforce of physician-scientists to improve their health
    through research and clinical care.
        NIH Offices, Institutes, and Centers, including but not limited to
    the Office of Research on Women's Health (ORWH), the Eunice Kennedy
    Shriver National Institute of Child Health and Human Development, the
    National Institute of Diabetes and Digestive and Kidney Diseases
    (NIDDK) and the National Cancer Institute (NCI), are responsible for
    important research in women's health that has transformed medicine and
    improved the health outcomes of women today. To continue its promising
    multicenter research, the NIH should develop a plan to prioritize
    research in conditions specific to women and those that may present
    differently in women than men. An equitable investment in women's
    health research is critical to improving the health outcomes of women
    and ensuring the future of research and discovery in this critical
    field.
                    fiscal year 2021 report language request
    National Institutes of Health Office of the Director
        Women's Health Research Priorities.--The Committee is concerned
    that funding for women's health research specifically related to
    obstetrics and gynecology remains disproportionately lower than other
    areas of research at the NIH. We believe more focus on this research is
    required to address the rising maternal morbidity and mortality rates;
    rising rates of chronic debilitating conditions in women; and stagnant
    cervical cancer survival rates. The Committee encourages the NIH to
    convene a consensus conference to include representatives from the
    Office of Research on Women's Health (ORWH), the Eunice Kennedy Shriver
    National Institute of Child Health and Human Development, and the
    National Cancer Institute, as well as any other relevant NIH Institutes
    and Centers and public stakeholders, to evaluate research currently
    underway related to women's health. As part of the consensus
    conference, NIH shall submit a report in the fiscal year 2022
    Congressional Justification that identifies priority areas for
    additional study to advance women's health research, including
    reproductive sciences.
    Funding to Support Research Related to COVID-19
        WFRC recognizes and appreciates the actions already taken by
    Congress to address the COVID-19 public health emergency, including
    providing funding to NIH. Early data show that the virus manifests
    itself differently in women than in men, and has serious effects beyond
    those on the respiratory system. The NIH must prioritize research to
    gain a better understanding of how and why this is happening. In recent
    years, the NIH has done significant work to gain an understanding of
    sex as a biological variable and of the role of sex must be examined as
    it relates to COVID-19 infection, disease progression, and the
    development of effective therapeutics. All COVID-19 related studies
    must enroll participants that are balanced by gender.
        It is critical that we also study the effects of COVID-19 on
    conditions that are unique to or predominantly occur in women, such as
    pregnancy. While limited data suggest that the outcome of COVID-19
    during pregnancy is not worse than that of non-pregnant women, the
    clinical experience of influenza, SARS and MERS infections indicates
    that severe respiratory infections may worsen during pregnancy, which
    could exacerbate morbidity and mortality during gestation. Poorly
    justified concerns about the safety of medications and vaccines during
    pregnancy have already led to the exclusion of pregnant women from
    almost all pertinent COVID-19 clinical trial, including vaccine trials.
    While the emerging reports do not find a significant effect of COVID-19
    infection on the newborn, it remains to be determined whether the child
    is affected in the long-term. Every attempt should be made, based on
    sound scientific and clinical data, to include pregnant women in
    clinical trials designed to prevent COVID-19, mitigate its severity,
    and gain a better understanding of the virus. While most medical fields
    have the ability to continue caring for their patients by telehealth or
    to postpone elective procedures, pregnant women still require in-person
    care in the clinics or hospitals in certain circumstances.
        The COVID-19 pandemic has also drastically disrupted care for women
    seeking fertility and contractive services and those with chronic
    disease like cancer and benign gynecological disease. Moreover, we may
    see an increase in gynecologic cancers, such as cervical and
    endometrial cancers due to patients postponing or forgoing screenings
    out of fear of exposure to the virus. These disruptions in care are
    expected to continue for a significant period of time, and therefore it
    is important to understand and mitigate the effect of COVID-19. We need
    evidence as to how best to provide care for conditions specific to
    women during the COVID-19 pandemic and future pandemics.
                        fiscal year 2021 funding request
        To address the COVID-19 pandemic, we must devote research to
    prevent, treat, and understand the deadly virus. We ask that the
    Subcommittee on Labor, Health and Human Services, and Education, and
    Related Agencies consider emergency funding for research (and all
    related costs) dedicated to COVID-19 at the NIH, and prioritize
    research on its effect on conditions that affect only women, such as
    pregnancy, breast and ovarian cancer, benign gynecologic disease, and
    delays in fertility and contraceptive services.
                                     ______

                     Prepared Statement of YMCA of the USA
        Thank you, Chairman Blunt and Ranking Member Murray, for the
    opportunity to provide testimony on behalf of our nation's 2,700 YMCAs
    and the 22 million individuals--including eight million youth--we serve
    annually. Every day, Ys work to address critical social issues that
    affect our nation, nurturing the potential of every child and making
    our communities healthier by preventing chronic disease and decreasing
    disparities among minority populations.
        As President and CEO of YMCA of the USA (Y-USA), I believe that our
    country has never needed the YMCA more than it does now. With the
    impact of COVID-19 changing nearly every aspect of daily life, I submit
    this testimony in support of the attached programs, which the Y
    leverages to ensure our communities are strong, safe and secure in a
    time of great need.
        The Y has been serving communities across the country for nearly
    170 years--through both prosperous and challenging times. We have
    weathered world wars, other pandemics, economic recessions and great
    social and geopolitical upheaval. So, we know the Y will survive this
    crisis. But we cannot thrive without partnerships and support.
        Even with facilities closed, Ys are continuing to find ways to help
    those in need by providing emergency child care for essential workers,
    feeding programs for children without access to school meals, emergency
    shelter for those experiencing homelessness, check-ins for seniors
    facing isolation, blood drives, and holistic health and wellness
    support for all ages. Many of these programs are supported by Federal
    appropriations under your committee's jurisdiction.
        As the nation's largest nonprofit provider of child care, we know
    that child care is a backbone of the nation's economic recovery efforts
    and essential to our health and public health infrastructure; parents
    need safe, reliable child care to return to work. The Y is an
    experienced community provider of quality care, with more than 1,400
    early learning sites, 7,300 before- and after-school program sites, and
    2,000 summer enrichment and learning programs, prior to COVID-19. Many
    of these programs serve vulnerable children and families and leverage
    Head Start, Child Care and Development Block Grant (CCDBG) and 21st
    Century Community Learning Centers (21st CCLC) funding to ensure that
    kids are safe, healthy, engaged and on a path to lifelong success.
        With school and child care closures, out-of-school time--
    traditionally thought of as the before- and after-school hours and
    summer months--is now all the time. This crisis has underlined how
    critical child care is for working families and how child care programs
    help prepare young children for school and complement what children
    learn in school. I am proud of the Y's ability to respond to community
    needs during this crisis by transitioning from traditional child care
    programs to operating more than 1,100 emergency child care sites for
    essential personnel, more than 1,100 emergency feeding sites and
    offering virtual youth development programming. Continuing to invest in
    child care will help the Y ensure that young children and school-aged
    children alike thrive.
        We also know that COVID-19 has put stress on families who are
    attempting to navigate new safety protocols, school closures, uncertain
    child care, job losses, social isolation and barriers to support
    services, which, unfortunately, lead to an increased risk of child
    abuse and neglect. This impact is magnified since teachers, child care
    providers and other adults trained in identifying and reporting abuse,
    like those at the Y, have not been able to offer in-person services.
    Strengthening the system to face these challenges will require
    increased efforts across the entire child welfare continuum, which
    depends on increased Federal funding. This includes increasing funds
    for Child Abuse Prevention and Treatment Act (CAPTA) Titles I and II,
    which enable states and community-service organizations, like our
    YMCAs, to increase abuse prevention through locally driven services
    that are essential to building healthy and thriving communities.
        As the pandemic continues to adversely affect the physical health
    of millions, the Y also continues to be a leading voice on health and
    well-being. Over the past decade, the Y has driven innovation in
    prevention and control of chronic disease in partnership with the CDC
    to save lives and reduce healthcare spending. During this pandemic, our
    nation is seeing that investing in chronic disease prevention programs
    and evidence-based health interventions has never been more critical to
    help mitigate the impacts of other diseases, especially among certain
    racial and ethnic populations that have been disproportionately
    affected by COVID-19. The CDC has supported the Y to scale evidence-
    based initiatives such as the National Diabetes Prevention Program;
    hypertension and blood pressure monitoring programs; comprehensive
    cancer programs; and arthritis control, falls prevention and weight
    management programs, among others, to save lives.
        According to the CDC, older adults and individuals with serious
    underlying medical conditions are likely to be at higher risk of severe
    illness from COVID-19. Six out of ten adults in the United States have
    at least one chronic disease and four out of ten have more than one.
    This means people living with diabetes, hypertension, obesity, lung
    disease and cancer are at a higher risk of becoming critically ill if
    they contract COVID-19. Our evidence-based health intervention
    programs, supported through the CDC's Center for Chronic Disease
    Prevention and Health Promotion, prevent and help people better manage
    these conditions. During the COVID-19 pandemic, most of our YMCAs have
    moved their in-person evidence-based programs to virtual platforms and
    have seen incredible uptake and retention rates. Ys have also placed
    tens of thousands of check-in calls with seniors and other at-risk
    populations to provide support, wellness and connection during this
    time of isolation.
        We are also acutely aware of growing unforeseen challenges arising
    from the nation's aggressive, though necessary, COVID-19 response.
    Recent data from Florida has shown that childhood drowning deaths in
    the state have increased more than 100 percent during the months when
    stay-at-home orders have been in place, with anecdotal data pointing to
    drownings resulting from at-home working parents being overly tasked
    and unable to monitor their children full-time. With summer
    approaching, and stay-at-home orders remaining in place, funding for
    drowning prevention programs and data collection at CDC's Injury Center
    has never been more critical.
        While no one is certain what the future holds, we do know that the
    path forward for many of our Ys and the communities they serve will be
    extremely challenging. The Y is ready to meet that challenge head-on.
    We hope that you will take into consideration the accompanying fiscal
    year 2021 Labor, Health and Human Services, Education and Related
    Agencies appropriations requests for programs that fund many of these
    vital services our communities rely on.
        Thank you for your consideration of these requests; they will be
    critical in ensuring the Y can help communities across the nation
    survive and thrive during and beyond this trying time. We hope you will
    be able to visit some of our Ys, when the time is appropriate, and see
    firsthand the powerful impact these programs have on the lives of
    individuals, children and families in our communities.

        [This statement was submitted by Kevin Washington, President and
    CEO, YMCA of the USA.]

                               [all]