[House Hearing, 116 Congress]
[From the U.S. Government Publishing Office]
DEPARTMENTS OF LABOR, HEALTH AND HUMAN
SERVICES, EDUCATION, AND RELATED AGENCIES
APPROPRIATIONS FOR 2020
_______________________________________________________________________
_______________________________________________________________________
HEARINGS
BEFORE A
SUBCOMMITTEE OF THE
COMMITTEE ON APPROPRIATIONS
HOUSE OF REPRESENTATIVES
ONE HUNDRED SIXTEENTH CONGRESS
FIRST SESSION
_________
SUBCOMMITTEE ON LABOR, HEALTH AND HUMAN SERVICES, EDUCATION, AND
RELATED AGENCIES
ROSA L. DeLAURO, Connecticut, Chairwoman
LUCILLE ROYBAL-ALLARD, California
BARBARA LEE, California
MARK POCAN, Wisconsin
KATHERINE M. CLARK, Massachusetts
LOIS FRANKEL, Florida
CHERI BUSTOS, Illinois
BONNIE WATSON COLEMAN, New Jersey
TOM COLE, Oklahoma
ANDY HARRIS, Maryland
JAIME HERRERA BEUTLER, Washington
JOHN R. MOOLENAAR, Michigan
TOM GRAVES, Georgia
NOTE: Under committee rules, Mrs. Lowey, as chairwoman of the full
committee, and Ms. Granger, as ranking minority member of the full
committee, are authorized to sit as members of all subcommittees.
Robin Juliano, Stephen Steigleder, Jared Bass, Jennifer Cama,
Jaclyn Kilroy, Laurie Mignone, Philip Tizzani, and Brad Allen
Subcommittee Staff
___________
PART 7
Page
MEMBERS' DAY........................................................1
OUTSIDE WITNESS TESTIMONY..........................................85
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
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Printed for the use of the Committee on Appropriations
U.S. GOVERNMENT PUBLISHING OFFICE
37-627 WASHINGTON: 2019
COMMITTEE ON APPROPRIATIONS
----------
NITA M. LOWEY, New York, Chairwoman
MARCY KAPTUR, Ohio
PETER J. VISCLOSKY, Indiana
JOSE E. SERRANO, New York
ROSA L. DeLAURO, Connecticut
DAVID E. PRICE, North Carolina
LUCILLE ROYBAL-ALLARD, California
SANFORD D. BISHOP, Jr., Georgia
BARBARA LEE, California
BETTY McCOLLUM, Minnesota
TIM RYAN, Ohio
C. A. DUTCH RUPPERSBERGER, Maryland
DEBBIE WASSERMAN SCHULTZ, Florida
HENRY CUELLAR, Texas
CHELLIE PINGREE, Maine
MIKE QUIGLEY, Illinois
DEREK KILMER, Washington
MATT CARTWRIGHT, Pennsylvania
GRACE MENG, New York
MARK POCAN, Wisconsin
KATHERINE M. CLARK, Massachusetts
PETE AGUILAR, California
LOIS FRANKEL, Florida
CHERI BUSTOS, Illinois
BONNIE WATSON COLEMAN, New Jersey
BRENDA L. LAWRENCE, Michigan
NORMA J. TORRES, California
CHARLIE CRIST, Florida
ANN KIRKPATRICK, Arizona
ED CASE, Hawaii
KAY GRANGER, Texas
HAROLD ROGERS, Kentucky
ROBERT B. ADERHOLT, Alabama
MICHAEL K. SIMPSON, Idaho
JOHN R. CARTER, Texas
KEN CALVERT, California
TOM COLE, Oklahoma
MARIO DIAZ-BALART, Florida
TOM GRAVES, Georgia
STEVE WOMACK, Arkansas
JEFF FORTENBERRY, Nebraska
CHUCK FLEISCHMANN, Tennessee
JAIME HERRERA BEUTLER, Washington
DAVID P. JOYCE, Ohio
ANDY HARRIS, Maryland
MARTHA ROBY, Alabama
MARK E. AMODEI, Nevada
CHRIS STEWART, Utah
STEVEN M. PALAZZO, Mississippi
DAN NEWHOUSE, Washington
JOHN R. MOOLENAAR, Michigan
JOHN H. RUTHERFORD, Florida
WILL HURD, Texas
Shalanda Young, Clerk and Staff Director
(ii)
DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, EDUCATION, AND RELATED
AGENCIES APPROPRIATIONS FOR 2020
----------
Wednesday, March 27, 2019.
MEMBERS' DAY
WITNESS
HON. PETER J. VISCLOSKY, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF
INDIANA
Ms. DeLauro. The subcommittee will come to order.
Let me welcome everyone to the Labor, HHS, Education
Appropriations Subcommittee for our Member Day hearing.
As the largest nondefense appropriations bill, this
subcommittee allocates approximately one-third of annual
nondefense discretionary spending. The programs in this bill
fund lifesaving biomedical research. They equip our Nation to
deal with public health emergencies. They level the playing
field for low-income children looking to learn. They help
Americans get the skills they need to find a job in a tough
economy. The programs directly impact the lives of Americans
across our country, especially children, families, and seniors.
We all concur that as we draft a new bill for fiscal year
2020, it is important to hear from our colleagues about their
top priorities, and so that is what brings us here today. I
also might add that over the last several years, I have been
pleased to work with our ranking member, as we will fight for
the largest allocation that we can for this subcommittee and to
try to be able to meet the needs of the--it is actually of the
constituents that the Members represent and that we try to do
that in a fair and an equitable way so we are addressing the
issues.
So, with that, let me recognize my good friend from
Oklahoma, the ranking member of the subcommittee, for any
remarks he cares to make.
Mr. Cole. Thank you, Madam Chair.
And I will be brief, but I want to begin by thanking you
and, frankly, thanking the majority for continuing this
tradition of Member Day. I know when we worked together over
the last 4 years, a lot of good suggestions have come from
Members and have been incorporated in the bill on a bipartisan
basis.
So I think this is a very useful exercise, and again, I
commend the majority for having maintained it and making sure
that we have the time scheduled for it. So I am not going to
intrude on our colleagues' time, but again, I just want to
thank you.
I look forward to the testimony we are going to receive
today because I know in the past, both of us have always found
it to be very helpful and, frankly, find that Members bring
unique perspective and knowledge forward. And we try what we
can on a bipartisan basis to accommodate that in the
legislation.
So, again, that concludes my remarks. I yield back.
Ms. DeLauro. Thank you very much.
And let me just remind Members that you have 5 minutes for
oral testimony. The full written testimony will be entered into
the record.
And now let me just recognize my good friend from Indiana,
the chairman of the Defense Appropriations Subcommittee,
Chairman Visclosky, for 5 minutes.
Mr. Visclosky. Chairman, thank you very much.
I am here to testify on behalf of three programs. The first
is the Student Support and Academic Enrichment State Grant
Program, and I am here to, first of all, thank you and Mr. Cole
and the members of the subcommittee, to essentially refuse the
repeated requests by the administration to defund this program.
I am pleased that most recently the subcommittee funded
this program at a level of $1,170,000,000. I will also
obviously ask the subcommittee to continue your fine support
for this program.
The second program of great importance, I think, to all of
us across the country is the CDC Childhood Lead Poisoning
Prevention Program. I am here to ask for a funding level of
$70,000,000 for fiscal year 2020.
In the State of Indiana, we have had to test 65,318
children, or about 11 percent of all children in the State
under the age of 7 in the year 2017. In my own district, we
have had 2,278 children tested near a Superfund site in East
Chicago, Indiana. And again, I would urge the subcommittee to
reject the President's request to cut funding for this very
important program.
Finally, I am here to request that the subcommittee provide
at least $661,000,000 for OSHA for fiscal year 2020. Under its
current funding of almost $558,000,000, OSHA only has the
resources necessary to inspect every applicable workplace once
every 165 years.
And again, I thank both of you for your time very much.
[The statement of Mr. Visclosky follows:]
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Ms. DeLauro. I thank the gentleman, and let me just say
that the issue of lead poisoning is one that is around the
country. As is nationwide, in my part of the country, it is not
about water, but it is about paint chips, et cetera, and we are
struggling with that effort.
The Student Support and Academic Enrichment State Grants
have really been very, very helpful to localities in terms of
broadening the environment for our youngsters to be able to
learn, whether it is STEM or it deals with mental health
services or music or art, so forth. This is a solid program.
And we want to make sure, as you do, that our workers are
safe on the job. So I appreciate, you know, the testimony and
the interest in these areas. And as the ranking member said, we
do our best to try to make it possible for us to look at these
things in a way that is going to be advantageous to your
constituents.
So thanks so very, very much.
Tom.
Mr. Cole. Just quickly, I want to thank my friend for his
advocacy. These are all worthy causes and things that we have
worked on on a bipartisan basis in the past.
And just to make a point that I think all of us here in
this room know, but for the record, what we are going to
ultimately need is a larger deal involving our colleagues in
the Senate and the administration, as well as both sides in the
House. Otherwise, none of these requests we are going to hear
today will become possible. We will end up sequester, and I
know my good friend who chairs the ranking--who is the chairman
of the Defense Subcommittee of Appropriations knows how
devastating that would be for our military.
It would be equally devastating for a lot of programs
domestically as well. So, hopefully, those above us can come to
an arrangement, and we can work with them to implement it.
Yield back.
Mr. Visclosky. Thank you very much.
Ms. DeLauro. Thank you. Thank you very much.
Yes, I would like to invite Congresswoman Betty McCollum of
Minnesota. And repeat the same thing, Congresswoman, that 5-
minute oral presentation. We will put your full testimony into
the record.
Thank you for being here this morning.
----------
Wednesday, March 27, 2019.
WITNESS
HON. BETTY McCOLLUM, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF
MINNESOTA
Ms. McCollum. He didn't leave it on. It is good to be with
you this morning, Madam Chair, and one of my favorite ranking
members, Mr. Cole.
Thank you also for having this opportunity for me to
testify to you today.
I would like to talk about the continuous support for the
National Service. I am very proud of the fact that my State of
Minnesota is the national leader in volunteerism and national
service. The St. Paul/Minneapolis metro area is ranked number
one in the Nation for volunteering, and Minnesota is ranked
second among States for the number of citizen volunteer hours.
I am here today to ask this subcommittee once again to
fully fund the Corporation for National and Community Service.
This program operates AmeriCorps, VISTA, Senior Corps, RSVP,
Companion Corps, Foster Grandparents, along with State service
commissions.
The administration's fiscal year 2020 budget request calls
for the elimination of the Corporation for National and
Community Service, more commonly referred to as CNCS. The
administration states, and I quote, it wants to ``shift the
responsibility to fund national service and volunteerism to the
private nonprofit sectors.''
Madam Chair, as you are aware of, this subcommittee has
proven time and time again the broad bipartisan support and
bicameral support of CNCS, and the President's request is
unacceptable.
While I am deeply disappointed by the President's budget
request, I am deeply concerned in the manner in which CNCS has
been recently operating, one that I believe is ignoring
congressional intent.
June 2018, Barbara Stewart, the CEO of CNCS, announced a
transformational and sustainability plan for the Corporation.
September 2018, Labor, HHS appropriations bill was signed into
law, and the CNCS was funded at $1,830,000,000, despite--
despite the President's request to zero it out.
December 2018, CNCS announced its plan to close all 46
State and territorial offices in favor of regional offices as
part of a transformational plan. Within days, I heard from
outraged Minnesota nonprofits who partner with this great
organization. They work to fight poverty, strengthen
communities, and respond to local emergencies.
These stakeholders are losing their local office, but more
importantly, they are losing deep-seated relationships that
they have forged with the staff over the years. And I quote
from a letter sent to me by 250 Minnesota VISTA members who
strongly oppose this reorganizational plan, and I quote. ``A
local State office of CNCS with staff living and working in the
communities they support is essential to the success of VISTA,
to drive local community solutions to pressing challenges in
education, opioid crisis, public health service, and more. Our
office will close May 1st.''
I sent a letter to Ms. Stewart, requesting information
about how much taxpayers' money will be spent paying off leases
for empty office spaces that have already been closed or about
to be. The amount will likely be in the millions. I have yet to
receive a response.
I believe the leadership at this organization is operating
unilaterally, with little accountability to Congress,
stakeholders, or taxpayers. I do not know if their true intent
is sustainability or outright elimination. And I urge the
subcommittee to include language that prohibits the
transformation plan from proceeding and restore the 46 State
offices until Congress and local stakeholders are fully
consulted and included in a formal process to discuss the
future of CNCS.
Madam Chair, you know that I am not the only one concerned
about this plan. Thirty-five Members of our body have joined in
a letter that I have sent to Ms. Stewart, and the Inspector
General has also weighed in. And let me just quote the
Inspector General of this really quickly.
''Aspects of this plan present heightened risk of fraud,
waste, and mismanagement that warrant a particularly close
oversight.''
So, Madam Chair, Ranking Member, I believe that Congress
should fully fund this program, and we should also put a stop
to the reorganizational scheme, and we should exercise our
authority and responsibility to protect taxpayers' funds and
those stakeholders that we work for.
Thank you.
[The statement of Ms. McCollum follows:]
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Ms. DeLauro. Thank you very, very much for the testimony on
an area where there is, I believe, broad bipartisan support.
When you think of the range of programs--AmeriCorps, VISTA,
Senior Corps, RSVP, Companion Corps, Foster Grandparents--and
the work that is done here with these programs that engages, it
lets us focus on civic responsibility, engages people in a
process. It always strikes me as so shortsighted to eliminate
such a program.
I think I can guarantee you that this program is not going
to be eliminated. I just say that to you because I personally
have been fighting for years to increase the opportunity and
efforts for the National and Community Service.
I would also say that I, too, have written letters on the
issue of sustainability and that program and what it means. So
we will be taking a very hard and close look at that in terms
of this consolidation. I know it has drastic impacts in my own
community and State.
So I think you are right in characterizing it as
sustainability or elimination, and I think that that is the
answer that we have to come to. But I feel confident that we
are going to move forward in a very, very positive way on that
national program.
Ms. McCollum. Madam Chair. Madam Chair, if I may?
Ms. DeLauro. Certainly.
Ms. McCollum. I really think there needs to be a strong
cease and desist order. Because with the closing of these
offices, and every single one of these employees have to
reapply for their jobs. In some cases, the decision where to
move the original headquarters without any consult of Congress
or the stakeholders is up to 500 miles away. Pretty much
guaranteeing that they are not only eliminating the offices,
they are eliminating these long-term employees who have served
our community so well.
Ms. DeLauro. Our office from Hartford, Connecticut, would
go to Manchester, New Hampshire, with a loss of about 150 jobs.
So you aren't alone in this effort.
Ms. McCollum. And then, Madam Chair, I would like to put
the Inspector General's report in the record as well, please.
Ms. DeLauro. So ordered.
[The information follows:]
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Mr. Cole. Just quickly, my friend is correct, as is the
chair, when she says this program enjoys broad bipartisan
support. That is why it was funded last year, and I share my
friend's concern. So we look forward, once we know what our
allocation is, and obviously, once we all know that there is a
set of numbers agreed upon by all the relevant people--we all
live under this sword of Damocles right now until we get a
larger agreement--then this would certainly be an area of
priority for me.
I have seen the wonderful work that this particular
organization does. I have had it in my own hometown. And after
the Moore tornadoes, where they literally deployed dozens and
dozens of volunteers in service to America to help us in the
recovery effort. And it was extraordinarily helpful, and they,
frankly, stayed with us for a long time. I mean, they were
there well over a year after the disaster still.
But it takes a long time when you lose a home and
everything you have to actually put your life back together.
So, again, this is, in my view, money well spent and something
that is very bipartisan. Hopefully, we can work on to preserve
and enhance going forward.
Ms. McCollum. Thank you. Thank you both.
Ms. DeLauro. Thank you.
Congresswoman Wild. Also mention that your full written
testimony will be placed into the record, and we will recognize
you for 5 minutes for oral testimony.
----------
Wednesday, March 27, 2019.
WITNESS
HON. SUSAN WILD, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF
PENNSYLVANIA
Ms. Wild. Thank you very much.
Thank you, Chairwoman DeLauro and Ranking Member Cole, for
giving me the opportunity to testify before this committee on
this very important issue.
I am glad to have the opportunity to advocate for an
appropriations request that I have submitted to provide
adequate funding for Social Security, a program that is vitally
important to my constituents and to working and middle-class
families across Pennsylvania and in every corner of our Nation.
Social Security is the Federal Government's largest single
program. It enables millions of Americans to make ends meet,
including retired or disabled workers, their family members,
and family members of deceased workers.
Although payments to Social Security recipients are
considered mandatory spending, the agency depends on
congressional appropriations to carry out its programs through
its operating budget, primarily through the limitation on
administrative expenses account, otherwise known as LAE. The
LAE allows the 62,000 agency employees to provide core services
in 1,200 field offices, over the phone, and online.
This year, the agency expects to complete 2.4 million
Social Security income and initial disability claims. They are
projected to complete 761,000 disability hearings, 703,000 full
medical continuing disability reviews, and 2.8 million
redeterminations.
Despite the agency's attempts to hit its targets on claims
and hearings and Congress insisting that funds within the LAE
be set aside to clear claims and hearing backlogs, there
continues to be a massive, in some cases life-threatening,
backlog. At the end of 2018, 801,428 people were still waiting
for a hearing to determine whether they would be awarded their
benefits, 801,428 people.
The national average wait time for a Social Security
disability benefits hearing is 535 days. Last year,
Philadelphia, a city in my home State, had the longest average
wait in the country, 26 months. One West Philadelphia woman
with multiple sclerosis waited 878 days before getting a
favorable ruling.
Given this reality, I am alarmed that the administration
continues to submit to Congress budgets that are hundreds of
millions of dollars less than what Congress enacted the
previous year. The President's budget request will not help to
clear the agency's backlog, reduce wait times, modernize the
agency's systems, or allow the Social Security Administration
to hire more workers to efficiently carry out its mandate. The
administration's request will continue to jeopardize lives.
With millions of people depending on the critical safety
net program, I implore this committee to help Americans get the
services they need and deserve through the Social Security
Administration by providing full funding for the agency's
operating account, the limitation on administrative expenses
account.
Social Security is more than a Government program. It is a
commitment made by one generation of workers to the next so
that all workers can retire with respect and dignity and the
benefits they have earned. Join me, please, in standing with
working families and protecting Social Security.
Thank you.
[The statement of Ms. Wild follows:]
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Ms. DeLauro. Thank you very much and thanks for your
passion on this issue of Social Security. I am particularly
struck by, you know, this is generational. It ties one
generation to another, and it says that we are really
interconnected in that way.
And I think we all share the view that Social Security is
more than a program, and in so many respects, it is a lifeline
for people. And I think nationwide, we have heard from people,
I know from my own constituents, about the backlog, about
offices closing. And that, I believe, is something--that we
have to address.
I share the view that we are going to fight for a--what we
believe is the allocation that this subcommittee deserves. We
are one-third of the nondefense discretionary spending. And
that hasn't--it hasn't been regarded in the past as talking
about the kinds of increases that we need for Labor, HHS.
That being said, because we will have to take a look at
where the budget allocation is and what we do, but there are
also within the budget allocation, the priorities or the areas
that we believe are our Nation's security, but our Nation's
commitment. And Social Security is, in fact, you know, has to
be one of our highest, our highest commitments.
And so, and given the fact that you have got healthcare
costs going up, there are other kinds of things going up, which
is one of the reasons why we try to take a look at Social
Security every year in terms of its cost of living. So thank
you for your testimony this morning.
Ms. Wild. Thank you, Madam Chair.
Mr. Cole. Thank you, Madam Chair.
I, too, appreciate the testimony and certainly agree. We
all have--can cite cases where our constituents have waited a
long time to get their cases appropriately adjudicated, and
that is one of the relatively narrow areas where we actually
have direct jurisdiction in this subcommittee. So you have
certainly come to the right place.
And I know my friend, the chair, will have a lot of tough
decisions to make because there are a lot of pressing needs in
this bill for a variety of people that need help.
I will take this occasion to say I wish Congress would also
look, frankly, at the long-term solvency of Social Security.
Since 2011, we have been taking more money out of the trust
fund than tax brings in. And actually, in the last Congress and
again in this Congress, although I would invite my friends--I
am still looking for a Democratic colleague--when John Delaney
was here, I had one--that would actually look in a bipartisan
way about doing what we did in 1983 in a bipartisan manner,
when basically, President Reagan and Speaker O'Neill got
together and set up the Greenspan Commission to look at the
long-term solvency.
They made some tweaks and some changes. It passed the
Congress with bipartisan majorities substantially on each side,
and they extended the life of Social Security for decades. It
was, frankly, much closer to going bankrupt in '83 than it is
even today.
But it--you know, that magic moment won't come if we don't
do something when the line is crossed, and all of a sudden,
there is no trust fund left because we have exhausted it. And
we then have to live off the income that comes in, and that
will only fund about 78 percent of the benefits that are due in
2030 and thereafter, unless we act before then.
So it is cheaper to act sooner, and again, I think this can
be done in a bipartisan way. I regret that neither this
President nor, frankly, the last President--and but one
Democrat, one Republican--had done anything on it. The last
President that actually tried to do something was George Bush,
and that didn't meet with congressional approval.
But it is time to go back to a formula that we know works,
that we know is bipartisan, that we know produced legislation
that was broadly acceptable to both parties and very popular
with the American people. So I hope the day comes when we don't
just worry about the day-to-day administration, as important as
that is--and that is extremely important--but that we also
think about the long-term solvency here and approach this.
This isn't--actually, I have argued with two different
Presidents of two different parties about this or discussed it
with them. I said this is a political winner. You know, saving
Social Security is something you can be proud of. It is legacy
item for you.
When we did this in '83, Ronald Reagan carried 49 States
the next year, and Tip O'Neill stayed Speaker of the House. And
that is because they each had an important accomplishment they
could point to. It wasn't the only reason, obviously, but it
was something that the American people could look at and say,
hey, they can actually put what is good for all of us beyond
their differences and find common ground and go ahead.
So I hope the gentlelady's discussion here of the very real
needs also sparks that larger debate and discussion and that we
can proceed in a bipartisan way.
So thank my friend for being here and look forward to
working with the chairman to try and address this issue.
Ms. Wild. I concur, and I agree that it is better to be
proactive than reactive in this kind of situation for sure.
Ms. DeLauro. I would just only add that I think there are
ways in looking at increasing the sustainability of--and Social
Security is sustainable. We are not going to continue as we
have. We are not going to miss a payment of Social Security. We
need to examine those kinds of issues that would lift the cap
so that we have more people who are paying into the system and
get some bipartisan agreement on that effort.
We also--it is always interesting for me to note that there
is in terms of agreement, I am always struck by the balance in
the funding where we have, in fact, cut taxes for the richest 1
percent of the people in this Nation by about
$2,000,000,000,000, and then we do have those who would say
that, well, because we have done that and we have a deficit,
the other side of that needs to be where we need to cut. And it
is pretty much about the same amount of money,
$2,000,000,000,000 for Social Security, Medicare, and Medicaid.
So I am hopeful that we can find that common ground, but
the common ground needs to be really thoroughly debated and to
come to some balance with regard to why is there a deficit, and
what are the kinds of measures, like lifting the cap, that we
can do to ensure the long-term solvency of Social Security?
Thank you very, very much.
Ms. Wild. Very well said, Madam Chair. Thank you.
Ms. DeLauro. Thank you. Thank you.
I now invite Congressman Suozzi from New York to come
before us. Good morning.
Mr. Suozzi. Good morning.
Ms. DeLauro. Thank you for being here.
And what I have said to everyone else is that we will put
your full testimony into the record and would listen for your
oral testimony of about 5 minutes in length. Okay?
----------
Wednesday, March 27, 2019.
WITNESS
HON. THOMAS R. SUOZZI, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF
NEW YORK
Mr. Suozzi. Okay. Thank you, Madam Chairwoman.
Ms. DeLauro. Thank you.
Mr. Suozzi. And thank you, Ranking Member Cole.
I am here to talk about two issues today. I will try and be
as brief as possible. One is the Helen Keller National Center
for Deaf-Blind Youths, and the other is adults--and the other
is the Workforce Innovation and Opportunity Act.
And this committee has been very good to the Helen Keller
Center over the past couple of years. They went without any
increases for almost 16 years. Let me just tell you very
quickly.
The Helen Keller National Center for Deaf and Blind Youths
is a national organization. It is the only one of its type. It
was formed in 1967, and it is unique that it serves a
population that is both deaf and blind. Think about that. Both
deaf and blind combined.
You could imagine how important this organization is in the
lives of these folks that are confronting being both deaf and
blind at the same time. And right now, it is estimated that the
number of people that are both deaf and blind is actually going
to increase as the population ages out. And this organization
funds people that are over 16 years of age. They travel from
all over the country to come to this facility, as well as
having some regional centers that provide some outpatient
services.
So I am asking that the committee consider increasing the
Helen Keller National Center's 2019 funding from $13,500,000 to
$16,000,000, and this will help them accomplish their very,
very important mission. And this small investment of $2,500,000
more will make a dramatic change in the lives of the people
that are so affected by the services that they provide. And I
will give you some written testimony about the details of what
they are going to spend the money on.
The second topic is the Workforce Innovation and
Opportunity Act. I am asking that this committee consider
increasing that to $250,000,000 to expand apprenticeship
programs for fiscal year 2020. So as many of you know, wages
have been stagnant in America since the late 1970s. We have
seen decreasing unionization and globalization and automation
and increasing healthcare costs have all contributed.
And to earn more in today's economy, you have to actually
learn more. And for decades, we have been pushing the idea of
going to college and STEM--science, technology, engineering,
and mathematics. And we should continue to push that. I have
certainly pushed that with my children.
But we have to remember that 60 percent of Americans do not
attend college, and we need to encourage more high schoolers
and high school graduates to pursue noncollege, post high
school apprenticeship programs so they can acquire the skills
necessary to obtain skilled jobs as plumbers and electricians
and carpenters and welders and computer machinists and quality
control experts and radio frequency technicians and mechanics,
and much, much more.
These skills are in high demand throughout the country.
They pay better wages than just a straight high school diploma
would pay, and they require one thing--more skills training
that is could be provided through the WIOA program.
So back at home, I have created a task force to bring
together all the players that would be affected by this. I
brought together the county executives from two of the counties
that I represent. I brought together the Workforce Opportunity
Boards that now exist. I brought together the unions. I brought
together the community colleges, the vocational schools, what
we call BOCES in New York State. They are training for high
school, K to 12, really. All the different folks that provide
different types of training.
And I also brought in the largest chamber of commerce in
the region as well, along with other government officials. And
what we need to do is create a one-stop shopping program where
employers can say I need these type of jobs filled. And then we
need the trainers, the programs funded by WIOA and others, to
say we can provide those skills trainings to those people that
want those type of jobs. And then we need the employees to know
what jobs are available and where the training is.
So I believe that this is a very important issue in our
country today. And right now, a $250,000,000 per year
investment is really a relatively small, modest investment when
you think about how dramatic this problem is in our country.
There is such a stigma related to noncollege graduates in our
country right now, and I just want to just end by telling one
quick story.
Back in my district, I was the mayor of my hometown, Glen
Cove, Long Island, and I remember this guy--and there is a
million stories like this--who was a plumber. He had a great
business, and he had a beautiful home, and he owned a two-
family home down the street. And he rented that out to people
and made money from it.
And then he had a boat, and he went on vacations, big
vacations. And he would go out to dinner every Friday night up
at the restaurant called La Bussola in Glen Cove, and he would
be a big tipper, and he would take people out to dinner, and he
was a big, popular guy. And he made this--has this tremendous
business.
I said, ``Wow, you really have some business.'' I said,
``Are you going to give that to your kids later on?'' He says,
``No, they are going to go to college.''
The idea that the stigma associated with people who are in
these skill sets is something that has happened in our country
for 20, 30 years now, and in reality, 60 percent of Americans
don't go to college.
But to compete in this world today, especially in the
global economy, but with a whole bunch of other factors, as I
mentioned related to reducing--reduction in unionization and
globalization and automation, we need to provide more skills to
folks when they graduate from high school or even while they
are in high school. And we need to lift up the dignity of work
as been used by others for people who are working with their
hands, who are working these businesses that are much needed in
our country.
So the WIOA program would go a long way in doing that, and
I hope that you will recognize, and I am sure you do, that the
key to the middle class's future lies in supplying labor. And
to do this, we must increase our investments in noncollege
postsecondary education programs so we can teach the skills
which are essential to sustaining the American middle class for
generations to come.
I thank you so much for your kind attention.
[The statement of Mr. Suozzi follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Ms. DeLauro. Thank you. Thank you for your impassioned
testimony as well.
I just identify with your plumber story because we both had
uncles who are plumbers. And the restaurant. You know, I am
going to come and visit with you at the restaurant.
Mr. Suozzi. Yes, you are both invited to come to the La
Bussola.
Ms. DeLauro. Right, right.
Mr. Suozzi. We will celebrate Helen Keller and WIOA.
Ms. DeLauro. That is right. You are here. You are here, and
we hear you loud and clear on Helen Keller. As we have both
said in the past, we are going to fight for the largest
allocation that we can, and because of the one-third of the
nondefense discretionary spending is Labor, HHS oriented.
I think you have focused in on something that the
committee, I can tell you, on a bipartisan basis, where we have
had hearings on apprenticeships, career, you know, things from
education to career. These efforts are really very, very
critical.
You make the point. We are looking at the future of the
workforce in this country, and that is what internships,
apprenticeships, the certifications, et cetera, are all about.
Because, you know, the majority of people in this country do
not have a 4-year college degree, that doesn't mean that we
cannot assist with their dreams and their aspirations.
So I think that you can count on the committee looking at
this and to talk about, you know, the public investment in this
area is critical. And the investment in partnerships that we
can forge with business and with community colleges and others
to make dreams a reality, but more importantly, that people be
economically secure for themselves and for their family.
So we thank you for your testimony.
Mr. Suozzi. Thank you, Madam Chairwoman.
Mr. Cole. Thank you very much, Madam Chair.
I want to thank my friend for coming, and I hope you know--
more importantly, I hope your constituents know it and the
people that depend so much on the Helen Keller Center, but it
was your advocacy at this very Member Day last year that led to
the increase for that agency.
And this is a big bill with lots of different moving parts
and lots of accounts, and this is an important function. It is
a comparatively small account in, obviously, what is a
$180,000,000,000 bill, and you really brought it to the
attention of this committee, and it made a difference.
So I am glad to see you back here again, and the advocacy
was effective last year.
In terms of your second point on WIOA, couldn't agree more.
And we had increases last year. And while this subcommittee has
some disagreements with the administration, this is actually an
area they want to spend, make some more investments in as well.
And very, very bipartisan.
I don't think he will be here today, but I know our good
friend Representative Thompson from Pennsylvania also submitted
testimony in this area as well. He always comes down here and
supports this.
So my friend's point is well made. Most Americans won't go
to college. There is a whole range of skills that we need to
provide them so that they do well, and there are a host of
opportunities for folks, as your good friend--when you need a
plumber, ``Congressman, ah, you don't need a plumber.'' You
need a plumber right now. [Laughter.]
Mr. Cole. And so, but that is the point. There are lots of
good jobs out there if we will make investments in people, and
people choose a variety of different occupations and train
themselves in different ways, and we need to be flexible and
make those things available to all comers.
So I appreciate my friend's advocacy. Certainly, we will be
working with the chair in these areas to see if we can do some
things that help precisely the kind of people that you are here
to advocate for. That is those with disabilities that need the
help and, frankly, others that need the opportunity and don't
need to be left behind in a sort of one size fits all
educational system that is designed to end up with a 4-year
college degree.
Lots of other ways to make a good living and contribute.
So, and this committee takes that responsibility in a
bipartisan sense very, very seriously.
Mr. Suozzi. Thank you, Mr. Ranking Member. I appreciate it
very much.
Thank you very much, Madam Chairwoman. I want to work
together with you on any of these things that you would like me
to help with. And this issue of stigma of noncollege degrees is
a big issue.
Ms. DeLauro. Right.
Mr. Suozzi. Sixty percent of Americans don't attend
college.
Ms. DeLauro. Thank you.
Mr. Suozzi. Thank you so much.
Ms. DeLauro. We will work with you.
Mr. Suozzi. Thank you.
Ms. DeLauro. We welcome Representative Hagedorn.
Thank you so much for being here. And just to let you know,
your written testimony will be placed in the record, and we
will recognize you for 5 minutes of oral testimony.
So thanks so much for being here.
----------
Wednesday, March 27, 2019.
WITNESS
HON. JIM HAGEDORN, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF
MINNESOTA
Mr. Hagedorn. I appreciate that. Madam Chair, thank you for
the opportunity. Ranking Member Cole, pleasure to be here.
Congressman Graves.
I am coming today just to talk briefly about funding for
the NIH and also funding for some of our opportunities to
maintain, you know, good help and work in our rural
communities.
And I happen to represent Southern Minnesota, which is a
great part of the country, and we have wonderful rural
institutions of medicine across Southern Minnesota, but none
more outstanding than the one in Rochester, Minnesota--the Mayo
Clinic, the preeminent institution of medicine in all the
world. And it is quite the thing, our town of Rochester, about
115,000 people, and every year, literally, millions of people
roll in there from all around the world--kings, queens,
presidents, diplomats, dictators even. Everybody wants to go
there because it is some fine medical care.
But Rochester and Mayo, they have three shields they say at
the Mayo Clinic. The one is medical care, outstanding. And then
the other two that some people don't always realize is
education and research. And it is in the research side that
they work hand-in-hand with many institutions, and they get
some funding from the NIH, and they are doing wonderful things
with that funding.
And you probably heard lots of testimony about how the
investments that you made in that area are helping people with
life-changing situations. Cancer, could be helping prolong
life, help people live better lives.
And so I would advocate that you try to fully fund, as best
you can, those programs to continue the research in those areas
so we can help the American people and help all of mankind
because lots of what we do in the United States is piggybacked
all around the world.
And today, I am joined by three people who happened to be
in my office just this morning from the Mayo Clinic. Students--
we have Tyler. We have Lindy and Naz. And they happen to be
students at Mayo, and they are kind of along these efforts that
they are really trying to move forward to say let us not just
train doctors. Let us not just train scientists. Let us train
doctors who are scientists, and all three of them are working
in those areas to be both in pediatrics, could be Alzheimer's
research, things of that nature.
And I think it is a wonderful program. It makes a lot of
sense. I can tell you that the investments that you made are
true to form, right behind me. Right there, these three
youngsters, and they are going to go on to do great things not
just for Mayo, but for all of us.
And another area that is important to our district in
Minnesota and elsewhere is the concept that postgraduate work,
we keep people in our communities, especially the rural areas.
And you know, I think there was a program started maybe just
last year, and I don't believe it was fully funded. Maybe it
was $200,000,000 I think that was asked. Maybe $25,000,000 was
appropriated.
But whatever you could do to expand that because that helps
us in areas where we have lots of rural folks that need help,
and we need to have every incentive possible to keep people in
our communities because everyone in our country deserves
quality, timely medical care.
And so that is what we are here advocating for today, and I
appreciate your time.
Ms. DeLauro. I appreciate your time in being here, and I
will offer congratulations to the youngsters, as they are,
behind you, really.
Mr. Hagedorn. Compared to me.
Ms. DeLauro. Right. Well, and I will speak for myself, and
compared to me as well. But thank you and thank you for your
pursuit of excellence.
Particularly, I am particularly committed to research. I am
a survivor of ovarian cancer some 33 years ago. And so I always
say, and the ranking member has heard me say this before, I am
here because of the grace of God and biomedical research. So I
appreciate all the great work that the NIH does.
Like the Mayo, I represent Yale University, which has a--
you know, has received many, many grants for discovery from the
NIH and, in fact, have made, you know, discoveries through that
research. You would be happy to know that in a bipartisan way
over, I think, the last 4 years that we have increased the NIH
by about $9,000,000,000. And there is bipartisan support for
the NIH.
And because it is that research, it is the discovery, which
allows us to save lives, and that is what we don't have any
higher calling in this institution, any of us who hold these
seats, than to be able to look at the ability to save lives.
We also want to make sure that some of the other areas
within our jurisdiction that have to do with health-related
issues are being able to see increases as well because all of
this, as I say, is really the response to chronic illness, to
illness in this Nation. And so, you can, you know, be assured
that there is a primary focus on the National Institutes of
Health and its funding.
And I might add, and then I will yield to my colleague the
ranking member, graduate medical education is critically
important. And for me personally, as I said, that we will take
a look at what is going on in Connecticut in New Haven and at
Yale. So this issue is one of very much interest, you know, I
think to all of us here that looking at the pursuit of that
graduate degree and those issues that will make a difference in
people's lives.
I am going to yield to the ranking member.
Mr. Cole. Thank you very much, Madam Chair.
My good friend from Minnesota, you are very smart to come
here and advocate something that we are all for. Because as the
chair pointed out, in a bipartisan way, we substantially
increased NIH funding over the last 4 years, and it is
something I hope we can continue to do going forward.
It is very important actually for the people behind you to
see a signal that this country is serious about biomedical
research and intends to invest in it for a long time to come,
so that they can plan their careers accordingly and know that
there is going to be research dollars available.
I am particularly in favor of the second point you
mentioned, the graduate medical education thing. We actually
added that to the bill last year. We are still waiting for HHS
to actually submit the criteria by which people could apply for
those grants. But it is designed to try and help rural areas,
underserved areas as well.
To show you the serious commitment here, our chair is
leading us to the NIH I think Monday along with this
committee--next week or sometime next couple of weeks?
Ms. DeLauro. Yes.
Mr. Cole. We literally--this committee takes, goes and
visits the NIH regularly, in addition to the testimony and
comes down here. So I think that is a sign again about how
seriously we take it.
We quite often have the chair of the full committee that
joins us as well. So, you know, I think this is something that
will continue.
Two points worth making, I think, here is this actually has
been for many years, before--certainly before I was in
Congress, a not only bipartisan commitment, but something where
Congress has taken the lead. It was a Newt Gingrich Congress
that doubled NIH funding in the late '90s. He set us on that
path, and we continued it until 2003.
And then for a dozen years, it sat flat. We basically
didn't add any money. Four years ago, we decided that needed to
change, and it has never met any resistance in Congress.
This committee has actually put more money in than either
of the last two administrations have proposed on a yearly basis
because we think it is that important. And I think Members of
Congress maybe are a little bit closer to the people in this
regard.
I have had a lot of people appropriately worry about the
amount of money that we spend in a variety of areas. Nobody has
ever come to me and said you are spending too much on
biomedical research. You know, we just really don't need that
new cure for cancer. You know, the Alzheimer's challenge can
wait. We just don't get that. This is something that the
American public is very much for, and frankly, the cures at NIH
and the implementation at the Centers for Disease Control
absolutely critical in protecting American lives, every bit as
important as anything we do defense. I always use the line you
are much more likely to die in a pandemic than a terrorist
attack.
So you really need the research that puts us in a position
to deploy cures, and then you need the folks at CDC, who are
the front line in the public health system inside the United
States. These are very wise investments that you are advocating
for.
And I also want to add, we did another smart thing last
year that I hope the chair and our friends in the Senate sees
fit to do. As we put in language on what is called the
facilities administration to make sure that we don't--while we
give with one hand, take away with another and limit the
ability for us to have the infrastructures you need to actually
do the research.
So these issues, your friends from Mayo have been in my
office many, many times. I know they have been in the chair's
office as well. So they are up here advocating honestly as you
did, not just for your district or themselves as an
institution, but for all of humanity. So these are investments
that I think we can be proud of.
Again, everybody thinks, you know, we all know we won't be
here forever. So you want to think about what did you do when
you were here that might have made a difference someplace. This
is one of those areas where I think Congress, in a bipartisan
sense, can say we have made a difference here. It has improved
lives, the lives of the American people and, frankly, lives far
beyond our own country.
So appreciate your advocacy here. I think it is important
to know, and it is important for your constituents to know that
you are down here pushing something that, frankly, is critical
to them and has a good chance of getting bipartisan support and
a reasonable chance that we will continue the pattern that we
have been on in this area because, again, it has been very
bipartisan. And it is something I think Congress has been very
proud that it has worked on the last 4 years.
So glad to have you as part of the fight in pushing this
forward.
Ms. DeLauro. I want to thank you. Also I am going to ask
your advocacy, the advocacy of folks with Mayo and others.
We do know that--and the ranking member and I both know
that the President's budget has called for a $5,200,000,000 cut
in the NIH. You heard where we are on this issue in a
bipartisan way, but we are going to need the voices of all of
our Members. And we are going to need the voices of I always
point to you have got a lot of very, very well-meaning people
who sit in this body on both sides of the aisle, but it is the
external pressure that moves this institution.
You are the external pressure. So I hope that you will help
to galvanize whatever support we need to have in order to push
forward.
Mr. Hagedorn. Thank you. Appreciate your leadership.
Ms. DeLauro. Thank you. Thank you for being here.
Could I ask Congressman Khanna please step forward?
[Pause.]
Ms. DeLauro. Thank you so much, Congressman Khanna, for
being here this morning.
And as I have said to the others, your written testimony
will be placed into the record and recognize you for 5 minutes.
And I know that we also had a very, very brief conversation on
the floor last night about the area that you are interested in,
and so look forward to hearing from you.
----------
Wednesday, March 27, 2019.
WITNESS
HON. RO KHANNA, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF
CALIFORNIA
Mr. Khanna. Thank you, Chairwoman DeLauro, Ranking Member
Cole, and the distinguished members of this subcommittee, for
the opportunity to testify in support of language and funding
priorities for your appropriations bill.
I ask unanimous consent to submit extended testimony for
the hearing record.
First, let me express my appreciation for you, Chairwoman
DeLauro. No one has done more for children, I think, in this
Congress, and you know I have tremendous admiration, and I
admire how you remember all the floor conversations, even 30
seconds.
And Ranking Member Cole, I say this with much sincerity, I
always say when they ask me who is a thoughtful Republican, I
cite your name, and I appreciate very much your leadership.
I also would like to express my appreciation for the
$5,500,000,000 in funding awarded to the National Institute of
Allergy and Infectious Disease, NIAID, within the NIH's
$39,100,000,000 budget. This subcommittee's bipartisan
commitment to continued increased funding for the NIH over the
past 4 years is one of the best investments of public funds.
As you know, NIAID drives vital research necessary to fight
innumerable conditions and diseases suffered by millions of
Americans. A key to NIAID's mission is the study of allergies
and specifically food allergies. That is why I am testifying
today.
Food allergies affect 32 million Americans and their loved
ones, including 6 million children, and this is an issue that
is personal for me. That is 10.8 percent of the country is
battling daily with the constant, sometimes mortal dangers
caused by food allergies.
Food allergies do not consist of only sensitivity to
certain kinds of food, they can actually be life threatening.
In fact, 40 percent of children with food allergies have
experienced a severe reaction, such as anaphylaxis. Each year,
more than 200,000 Americans require emergency medical care for
allergic reactions to food. This is equivalent to one trip to
the emergency room every 3 minutes.
Data provided by the Centers for Disease Control indicates
that the prevalence of food allergies in children increased by
80 percent between 1997 and 2015. You know, when I was growing
up, this was not a huge issue. But these days, many kids suffer
from peanut and tree nut allergies and many other allergies, to
wheat, to milk, to dairy. There are numerous allergies that
aren't in the popular conversation.
In 2005, NIH established the Consortium of Food Allergy
Research, CoFAR, within NIAID. Over the following 14 years,
CoFAR has discovered genes associated with an increased risk
for peanut allergy and has also identified the most promising
potential treatments for egg and peanut immunotherapy. CoFAR's
4-year treatment actually allows participants to safely
reintroduce egg or other allergens into their diet.
In 2017, NIH announced its intention to award CoFAR
$42,700,000 over 7 years. Its annual $6,100,000 budget is
relatively small, compared to NIH's almost $40,000,000,000
budget, yet CoFAR has been able to achieve massive strides.
Accordingly, I have two requests for the subcommittee
today. First, I request respectfully that the report--
subcommittee report accompanying the final bill that I have
submitted be included, acknowledging the ground-breaking work
of CoFAR and encouraging robust investment to expand its
research breadth and network.
Second, I respectfully request an increase in funding for
CoFAR of $6,100,000 annually, bringing its yearly budget up to
$12,000,000. 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 to invest at proportional levels, given the scale of
this condition afflicting 32 million Americans, 6 million of
which are children.
Chairwoman DeLauro, Ranking Member Cole, I know of your
comment to NIH, and I know you do everything you can to fight
for increased funding. I hope this could be one of the
considerations in your budget.
[The statement of Mr. Khanna follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Ms. DeLauro. Thank you very much.
I think you make two very good points. I mean, we have seen
the increase in food allergies. I, for one, am lactose
intolerant. So I, you know, live with that. But it is not--I am
not in danger in the same way that I have watched other
families try to cope with what you call potential mortal
issues, anaphylactic shock, so forth.
So I think years ago, we didn't--you know, who knew, if you
will. But now we have the science and we have the technology
and we have the discoveries that have brought this to light,
and it is interesting, even if you go into airports and where
you go in, where there is food, et cetera, they tell you what
is in the product now, whether it has got gluten or whether it
is dairy or tree nuts or so forth.
So there is much more of a heightened awareness around all
of that. And with regard to that heightened awareness, we need
to have the heightened ability to try to deal with it.
And I am disappointed in seeing the President's budget,
which cut back food allergy research, and we will take a very
hard look at that. And so it is $8,000,000 below where we were
in 2019, and we did last year increase on a bipartisan basis
the funding. So we will take a hard look at what this means,
and we also included language in the last bill.
And where this is--with CoFAR, it is nonspecified at the
moment, but the concern is, is that we look at that between a
13 and 14 percent cut. We will address both of those issues.
This is a critical area.
And as I say, if we have the ability to bring it to light
and we know what is happening, et cetera, it doesn't seem to me
smart to roll back on trying to address the need in this area.
So while we fight for increased allocation, we will take a look
at this and try to accommodate the increases that are
necessary.
Thank you for your testimony.
Mr. Khanna. Thank you very much.
Mr. Cole. I want to thank you for coming and return the
compliment for your thoughtful testimony and what you bring to
the floor each and every day as a Member. You are one of our
very best Members.
Interesting to me, Madam Chair, that this morning, the
Member testimony, we have had people from I would consider the
range, the spec--across the spectrum of ideological opinions
here, all coming here to testify for the NIH, all coming here.
And particularly with your detailed knowledge, you know, you
help this committee a great deal when you can focus in, as you
did, on what is a pretty small part of a $39,000,000,000
budget, but a very important part, obviously, in terms of the
sheer number of people that wrestle with these kind of
problems.
So I think that is very helpful information to the
committee and something we can work on. The one--you know, I
always tell my good friend the chair, there are places where we
are going to fight, and there are places where we are going to
work together. And this has been a place that we have worked
together very, very well for 4 years, and I see no reason why
that won't continue going forward. So I look forward to working
with you on this.
Thank you for taking your time to come and testify and
highlight an area that at least I didn't have the knowledge
about that I would like to have had. That is helpful, and you
have my commitment to with our chair on this very important
bipartisan and, to be fair to our friends in the Senate,
bicameral project that Congress has pushed on pretty hard for 4
years and I suspect will continue to push on in a bipartisan
way going forward.
Mr. Khanna. Thank you, Ranking Member Cole.
Thank you, Chairwoman DeLauro.
Ms. DeLauro. Thank you. Thanks so much for being here.
[Pause.]
Ms. DeLauro. Let me invite Congressman Smith to come.
Listen, we have got--yes, yes, Congressman Smith is going to
come up. If you are here, we are going to hear from you.
That is right. Welcome.
Mr. Smith. I appreciate it.
Ms. DeLauro. Wonderful to see you. And if I may--can I just
say something else that is on a totally different issue? Thank
you for your ``Dear Colleague'' on paycheck fairness. Okay.
Thank you so much. Appreciate it.
Mr. Smith. I believe in it. It is easy.
Ms. DeLauro. Thank you.
Mr. Smith. It will pass, and I hope it----
Ms. DeLauro. Yes, today is the day. We will put your entire
written testimony into the record and will yield 5 minutes.
Mr. Smith. If I could?
Ms. DeLauro. Yes. Oh, absolutely, attachments. And welcome
and delighted to hear from you for your testimony.
----------
Wednesday, March 27, 2019.
WITNESS
HON. CHRISTOPHER H. SMITH, A REPRESENTATIVE IN CONGRESS FROM THE STATE
OF NEW JERSEY
Mr. Smith. Thank you very much, Chairman Rosa DeLauro and
my good friend Tom Cole as well. Both of you, thank you for
your leadership, which over the years has been extraordinary.
I mean, the last couple of Labor, HHS bills, last several
have been--particularly when it comes to NIH and Alzheimer's. I
chair the Alzheimer's Caucus, and the plus-up to $2,300,000,000
is a game changer. Things will happen.
And you know, in talking to our friends at NIH as well as
the Alzheimer's Association, they couldn't be happier with the
progress. It will lead to cures and hopefully mitigation of the
onset, early onset, and other problems that are plaguing people
who have Alzheimer's.
So thank you for that. That was just an extraordinary feat.
On another issue, I serve and I have been working on the
issue of Lyme disease since back in 1992. The head of the Lyme
Disease Association of America is from my district, and she
came to a town meeting--her name is Pat Smith--and said, ``What
are you doing about Lyme?'' I said I don't know anything about
it. Became a quick study on it. I have worked on it ever since.
In 1998, introduced a comprehensive bill, done it every
year, every Congress thereafter for comprehensive legislation.
But the main part was to have an advisory or blue ribbon panel
that would look at Lyme and realize it is being undercounted,
underfunded when it comes to NIH and CDC. And finally, our
language was put into the 21st Century Cures Act, and the first
report that came out is a blockbuster report of missed
opportunity over the years and an engraved invitation to each
and every one of us to really plus-up CDC and NIH on Lyme
disease to make a difference.
It is the disability and disease that is the most
underfunded of all of them, according to this report. And it is
getting worse. The coinfections from other vector-borne
diseases are multiplying very, very rapidly. Every State of the
Union has Lyme. It is often, to this day, misdiagnosed,
sometimes multiple times, by doctors. So I would make a strong
appeal to significantly fund it, increase it, CDC and NIH.
The CDC is now spending about $13,000,000 online. That is
wholly inadequate. And again, that is not just me talking. That
is the advisory committee, Dr. Benjamin Beard and others who
sit on that, and he is from CDC, will tell you more money is
needed. So I do hope you will work on that.
On autism, as you probably know, back in 1997-'98, I
introduced the first autism bill. It became Title I of the
Children's Health Act. I have written two laws since called
Autism Cares, and we have one pending now.
Again, what I am asking here, 1 out of every 59 children
are manifesting autism. They are on the spectrum. In my State,
it is 1 out of 32. It is epidemic numbers. So I would ask you,
if you would, at least maintain the current funding for autism,
$260,000,000 for NIH, which I think will help to make a
difference. If you could put more in, obviously, it would be
great.
Duchenne. I want to thank Tom Cole. Last year, he put
report language in asking for additional funding for this.
Duchenne muscular dystrophy, I should say. I have two
organizations and two young boys in my district, and two
organizations have built around it, their families. And I have
to tell you, the work that they have done, you know, in trying,
raising money themselves has been extraordinary.
One of the groups, Ryan's Quest, has raised over $2,500,000
through fundraisers for research. We spend about in the 30s.
Hopefully, it is going to be much more, and that is what that
report language asks for, and I do thank you, Mr. Cole, for
that.
Dystonia is another issue, and I have gotten to know a
young woman in my district who has that totally debilitating
disease. And the NINDS are the ones who walk point on that. We
really do need, hopefully, to provide research not just stable,
but perhaps more funding on that as well.
Finally, on the--not finally, but almost out of time. On
the cord blood issue, I introduced that bill as well. It was
signed into law in the year 2005, reauthorized again, to
provide cord blood transplantation. The breakthroughs that have
been made in the area of cord blood stem cell research are
extraordinary.
Seventy diseases now are either mitigated or actually a
resolution of disease when a transplant of umbilical cord blood
occurs. It is the breakthroughs are extraordinary, and it has
been married--as you know, my last bill, law, married it with
the whole idea of the great work that Bill Young had done. And
we actually named it after, C.W. Bill Young's Cell
Transplantation Program.
And we are asking for $30,000,000 at least for the cord
blood inventory, and we have never reached the appropriations
level of what is in the authorizing legislation. So I would ask
you respectfully to take a look at that.
And finally, on an issue I know we disagree, Madam
Chairman, although Ranking Member Cole and I would agree on
this. But I would ask and make a strong appeal that the Hyde
Amendment and other pro-life language be retained. You know,
the President has made clear he will veto any bill that in any
way weakens or nullifies existing law.
Barack Obama, during his 8 years as President, signed into
law virtually every single yearly, whether it be through, you
know, a continuing resolution or Labor, HHS bill, language that
continued those pro-life riders. One thing that is
underappreciated is that the Hyde Amendment has saved well over
2 million people who are living today.
When money is not available to facilitate abortion, the
estimates--and there are at least 20 peer-reviewed studies that
show this, some of them extraordinarily credible--that the
numbers of children who are not aborted goes down, and it is--
those people are anywhere from 40 years old to 39 years old
because, obviously, Hyde has been around for a little over four
decades.
I did see a movie last night, along with a few others, and
I would respectfully ask that Members and staff take the time
this weekend to go to a theater and perhaps see it or get the
CD when it is available. It is called Unplanned. And it is a
movie of a woman who ran a clinic in Texas for 8 years, Abby--
Abby, who I have known for a number of years. I read her book.
And she became a pro-lifer after she saw an ultrasound-
guided abortion. She was totally onboard, pushing it. She--as
she says in the movie, she says in the book, they did over
22,000 abortions in her clinic alone. She ran it for 8 years.
And at the end of the day, when she saw the child die, she
became a believer that it is a life and needs protection.
So it is worth taking a look at that video that it is in
theaters, 1,000 theaters beginning this Saturday, and I
respectfully ask to take a look at it. I know we disagree on
that, Madam Chair. But to me, this is about protecting all life
from womb to tomb.
Thank you.
[The statement of Mr. Smith follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Ms. DeLauro. I want to thank the gentleman for his
testimony.
And I come from the State of Connecticut where Lyme disease
was first really discovered, and so I know the tragedy of Lyme
disease, actually, and that it lingers on and on and on. And as
you pointed out, misdiagnosed in so many instances, which--and
that misdiagnosis leads to many, many, many more difficulties,
medical difficulties in the future.
And I am interested in what you said. It is the least
funded area of research. And one of the things that I am
critically interested in is we do provide serious money to the
NIH, as we should. But more recently, we have taken a look at
some of the big blockbusters--Alzheimer's, which we concur,
where it is going to BRAIN Initiative, The Moonshot, you know,
several other areas in which we are appropriating funding.
I want to take a very, very hard look--and I said this
earlier, you didn't hear me say this--at those areas and those
institutes, which over the last several years have not kept up
with the kinds of research that we--and I believe we need to--
and looking at some of these areas, which are very serious in
terms of their health repercussions that we are not now
addressing because they have been underfunded in some way.
So I want to try to take a look at everything that we do at
the NIH and look at some of these areas as well. We are all
committed to the NIH. They will be here next week.
Actually, there are two things. They are going to be here
next week to testify--we may have mentioned it to your office,
Ranking Member Cole, that we only usually get the six or seven
people who will come up. What I would like to do is to be able
at another point just to get the remaining institutes to come
up and to let us know about their work, their research, and
what are the areas that we can potentially look at?
You mentioned autism, which I spend a lot of time myself on
it, and you have got a champion here with Congressman Cole on
Duchenne, so forth. So the issues that you outline are
uppermost in taking a look at as we proceed.
We clearly on the last issue have differences of opinion. I
respect yours, and I know that you respect mine. And you know,
we are all supportive of life issues in so many areas that we
engage in in our responsibilities here.
So I thank you very, very much for your testimony. Thank
you.
Mr. Cole. Thank you very much, Madam Chair.
Just quickly, I must say it is pretty shrewd to send out a
``Dear Colleague'' to the chair's principal signature piece of
legislation before you come here and request. That is--there is
a reason why you operate so effectively in this body and have
for so many years.
But----
Ms. DeLauro. But he has supported that since it was
introduced----
Mr. Cole. No, I would not suggest anything else. But it was
I thought, boy, what a happy coincidence. I wish I thought of
something like that.
To my friend's point, these are all worthy causes. But I
want to take just a moment, Madam Chair, and really compliment
my friend for the kind of Member you are. I mean, frankly, when
I had the privilege of chairing the subcommittee, it was almost
like you were a member of the subcommittee in the sense that
you brought such knowledge in so many areas, and I think it is
why you are a really good legislator.
I mean, you are--you tackle big issues that people care
about with a great deal of passion, a great deal of energy, and
a great deal of bipartisanship, which you have certainly shown
throughout your career.
I always tell people that you are a Member's Member,
honestly, in just the way that you legislate and the way you
carry yourself and the contributions you have made in a very,
very broad range of issues in Congress since you were elected
in 1980. And you know, you have never lost any of your passion
or any of your commitment. It has been a real privileged treat
for me to serve with you and, frankly, learn from you about
what I think good legislation and, frankly, just good civility
within the chamber is all about, how you manage to do that.
And you don't duck away from the issues you believe in. You
always fight, but you always do in ways that even if people
happen to differ with you, they find some other reason and some
other cause to work with you on because you are civil in your
discourse, and you are bipartisan instinctually in your
approach.
So these are issues I will look at, and I applaud the
chair's I think wise decision to look more broadly at NIH and
to look at some of these other areas. We all know there is a
whole range of things, and we only have limited amount of time
and resources. But I think my friend is right that this bears
some additional scrutiny.
And again, I want to thank you, my good friend from New
Jersey, for bringing these kind of issues in front of this
committee and other committees of jurisdiction and never being
limited by the lane. We have lots of Members around here, and I
would say I am pretty much one of those. I tend to focus on my
committees or what I am doing. But you do that, but you have
also availed yourself of the entire range of powers and
resources that the Congress has available to, you know, enlist
it in good causes and focus its attention on worthy efforts.
And I just think, you know, whenever your career is done,
you are going to have an awful lot--and I hope that is not any
time soon. Believe me, we need Republicans in New Jersey, Madam
Chair. You are looking at the last one we got right there.
So, but you are a gift to this institution. You really are
an extraordinary Member, Chris. So I thank you for your
testimony, and I thank you for all the help that you certainly
gave me when I had the good fortune to be chair, and that you
continue to give to every member of this committee in
understanding some of these areas where they may not have a
personal experience, but you have had somebody through your
constituency or some various cause you have been associated
with.
Now I think you have for years helped to educate this
committee and get it pointed in the right direction. And again,
on things that we care about in a very bipartisan way.
And you have been a very helpful advocate on our side of
the aisle on these conditions because these things take money,
and you know, you have been willing to put your vote where your
voice has been on many occasions and help in that tough job.
And so, for that, I am very grateful. I think this committee
collectively appreciates your effort and, again, the manner in
which you work on the issues that we focus on here each and
every day. It is credit to you and to your constituents.
Mr. Smith. Well, thank you.
Ms. DeLauro. If I could just add one thing? I think
underlying all that you do, Congressman Smith, is where there
is suffering and where there is pain, whether it is
domestically or internationally, you help to lead the charge in
how we can address it. So thank you very, very much for that.
Mr. Smith. Madam Chair, thank you, and Mr. Cole, Ranking
Member, thank you.
You know what you--both of you did the last Congress,
especially with NIH at a time when calls for huge cuts were on
the table, and you increased it by $2,000,000,000, it was
extraordinary, a feat, heroic. And it is making a difference in
the lives of so many. And I can't say it enough, what you did
on Alzheimer's, you know, it is a game changer. And we are
going to see real changes, and I think soon, in the realm of
Alzheimer's that I know you did it together with the ranking
member and now as chair.
Ms. DeLauro. Amen.
Mr. Smith. Thank you so very much for your leadership.
Ms. DeLauro. Thank you.
Congressman Fitzpatrick, thank you so much for joining us
today. Appreciate it.
And just to let you know, your written testimony will be
placed into the record, and we will ask you and yield time for
5 minutes for your oral testimony. So, and look forward to
hearing that testimony.
Thanks so much.
----------
Wednesday, March 27, 2019.
WITNESS
HON. BRIAN K. FITZPATRICK, A REPRESENTATIVE IN CONGRESS FROM THE STATE
OF PENNSYLVANIA
Mr. Fitzpatrick. Thank you, Madam Chairwoman.
Chairwoman DeLauro, Ranking Member Cole, members of the
committee, thank you for hosting today's hearing and giving me
the opportunity to discuss perhaps the most important issue to
me for this year's fiscal 2020 appropriations.
On September 15th of 2016 at the age of 7, Philomena
``Bean'' Stendardo was diagnosed with DIPG. DIPG is one of the
most devastating cancers with a 0 percent survival rate and a
median survival of 9 months from diagnosis. Bean was an
exceptional athlete and mastered every sport she participated
in.
Like most of us at the age of 7, she was full of energy,
loved playing with friends and family, and perhaps unlike some
of us at age 7, she loved going to school. Just 10 months after
her diagnosis, on July 23, 2017, Bean lost her battle with
DIPG. She was 8 years old.
The research of the National Institutes of Health, a
collection of America's preeminent medical research centers, is
critical and plays a critical part in meeting the healthcare
challenges, strengthening our economy, inspiring the next
generation of scientists and maintaining our Nation's
leadership in innovation.
NIH has provided funding and support for some of the
world's best and most important medical research. The NIH has,
since its beginning, been the best hope for finding cures,
improving treatments, and gaining better understanding of
diseases and conditions that affect millions of Americans.
I encourage the committee to double the amount of funding
for cancer research at the NIH, but to reach a minimum of
$10,000,000,000 in fiscal year 2020 for the National Cancer
Institute, with a significant percentage of those funds focused
on pediatric cancers and specifically the research for an
effective treatment and cure for DIPG.
I am also encouraging the committee to increase funding to
the Pediatric Brain Tumor Consortium and specifically a 25
percent increase in funding aimed at cancer strategies through
pediatric brain tumor research. Investing in research for a
cure for cancers like DIPG will lead to curing other pediatric
brain cancers, and eventually nearly all cancers.
As the committee looks for ways to increase the speed of
research, especially with respect to data sharing, I encourage
you to look to organizations which have already developed
systems and methods which can expand the scale accordingly. For
example, in 2,011 organizations, researchers have identified a
need to better understand DIPG and other brain cancers.
Frustrated by a lack of information and collaboration, they
started a partnership which now consists of 110 institutions in
14 countries and over 80 foundations and chapters, representing
hundreds of patient families working together to share data.
Out of a patient diagnosis rate of approximately 250 per year,
this partnership is already sharing 1,400 patient datasets.
Before the DIPG registry, the largest sampling was around 70
patient datasets.
With data sharing comes the need to protect patient privacy
and standards for uniform collection. There should be a
standard process for collecting and inputting data in order to
protect the integrity of research and increase the speed and
effectiveness of cancer research.
It is also important that we avoid duplication and that we
are using every taxpayer dollar wisely. And if a successful
registry already exists, any taxpayer dollars going toward data
sharing should bolster the registry and use it for other
cancers. By using the best existing models, we can promote
collaboration and potentially save more lives.
The fight against cancer is one that transcends politics.
By working together, we can pass common sense bills that
increase the quality of life and care for patients and
ultimately put an end to this awful disease.
And as co-chair of the Cancer Caucus, I am committed to
finding and implementing solutions with this committee, which
will help us find treatments and, ultimately, cures for cancers
of all types.
Madam Chair, cancer is an illness that affects one in three
of us in our lives and will kill one in four of us. Perhaps the
worst form of cancer is pediatric cancer. We have no greater
responsibility, as elected officials and as human beings, than
to protect our kids. So pediatric brain cancer research and
pediatric cancer research I ask be a top priority in this
year's funding budget.
[The statement of Mr. Fitzpatrick follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Ms. DeLauro. Thank you very, very much for your testimony.
I am cancer survivor, ovarian cancer. Fifteen thousand
women die every year from ovarian cancer. I was spared.
Biomedical research and the grace of God, which I said earlier
today with regard to this. So I know what a cancer diagnosis
is. And I know what a cancer diagnosis is with regard to
children and the heartbreak of witnessing the treatment and
potentially the death of a child, a 7-year-old who has nothing
but to look forward to his life ahead and growing up.
What we did last year was we put report language into the
Labor, H bill. We did that on a bipartisan basis because it
says after accidents, cancer is the second-leading cause of
death in children ages 1 through 14.
In 2018, cancer affected 15,000 children and adolescents.
Most of the diagnosis will be for rare forms, which lack
therapeutic options. It goes on, but it urges the committee and
encourages the NIH to move in this direction.
And which we support. But I want to tell you that the NCI
in this current budget has been cut by about $900,000,000. That
is, in my view, outrageous. The NIH in the budget is
$5,200,000,000 in a cut.
We all have to address that. I don't care what side of the
aisle that we come from. Because every family has had to face
cancer in some way in this Nation, and your emphasis on
pediatric cancer is supported, and it is supported here. But
what we need to do is to make sure that we do have the
resources in order to address it.
One of the issues, and NCI, I believe, will be here. Is NCI
here next week? When we have the NIH, it will come forward, and
we will pursue the questions as to the commitment to rare
cancers, to pediatric cancer, which has in the past not been
focused on in the way that others have.
We can promise you that, but we also have to address the
concern that we fund the NIH. We have increased funding for the
NIH $9,000,000,000 in a bipartisan way over the last several
years. And with your help and the help of others, you had the
caucus, that what we need to do is to mitigate against those
who would want to cut back from the NCI and the NIH and look to
the areas which have not been focused on in terms of research
for the future because these children are our future, and it is
our job to make sure that we give them--that we give them the
chance.
I have been given a second chance at life. These children
need a second chance at life, and we have the capacity to do
that in this institution and in this subcommittee. So thank you
so much for what you are doing and for bringing this to our
attention. And I will look forward to working with you.
I yield to the ranking member.
Mr. Cole. I thank the chair very much, and I thank my
friend for being here. I made the point earlier it has been
interesting to me to watch how bipartisan and how across the
political spectrum the advocacy for the NIH has been.
My friend has been an advocate and a supporter ever since
he got here, and it does matter that we have voices and votes
beyond this committee that actually moved that. My friend has
not, again, only been a voice. He has been consistently a vote
to actually move this type of legislation forward. That is not
always an easy thing to do, but you have been there every time,
and I am very appreciative of that.
This, again, is an area of bipartisan concern and bicameral
concern. I am sure we will have support from our friends in the
other chamber, Republican and Democrat alike. And this is one
where, again, I think it is very helpful for you to come here
to lay down a marker, and again, since we are in the same
conference, I know how often you get up and lay down the same
marker to our colleagues. So it is--and where you have been on
the floor and where the votes have been. So I thank you for
your advocacy.
It is interesting to me, Madam Chair. You know, one of the
things, actually even before this committee moved, a very
divided Congress, I watched us take away money that we used to
spend on political conventions, taxpayer dollars, and redirect
that toward the Gabrielle Miller Kids First Research Fund a
number of years ago. And it was actually--I had had legislation
to do that for years, having been a chief of staff for the
Republican National Committee during a convention year and, all
of a sudden, getting a check from the Federal Government, I
remember, ``What do we need this for?''
I mean, we really can raise the money to fund our own
conventions. And it was actually Harry--I had Bill just return
it to the Treasury, and Eric Cantor called me and said, ``Do
you want to save that money, Cole, or do you want to spend it
on something that matters?'' And it was our colleague Greg
Harper that had a bill but was looking for a means to fund it,
and that is what we used to fund it. It passed through here
overwhelmingly because, again, concerns about the issues that
you are bringing forward transcend the normal political lines.
And they are where we are at our best, frankly, as a
Congress and as a people. We have been very blessed in this
country, and frankly, we can do some things that, obviously,
they help our own folks, but help people all over the world. It
is not like, you know, cancer stops at the borders of the
United States. It is not like cures stop there either.
So we are able to do some things, and we should take
advantage of the unique blessings that we have and be a leader
here. Interesting to me, cancer is something that we all have
got some sort of personal experience with. I mean, I don't know
a family that hasn't been touched by it. Friends have it.
And you know, 1.6 million Americans contract it every year.
We lose about 600,000 people every year. And you know, thanks
in part to this committee and brilliant researchers, 65 percent
of the people who contract it now survive it. And like my good
friend the chair. So we know this money has been well spent. It
has made a difference in the lives of millions and millions of
Americans.
So, again, I look forward to working with the chair on this
issue, and you know, applaud her efforts. She has been
invaluable in moving this ball forward throughout her career,
and certainly in the last 4 years as ranking member, and I know
she will continue to be effective as chairman, more effective,
I suspect. So I am looking forward to being her working partner
in that endeavor.
We thank you very much for coming and advocating on this
important cause.
Mr. Fitzpatrick. I just want to thank the chairwoman and
the ranking member not only for your time, but for your
compassion.
And Chairwoman DeLauro is a survivor. I know these kids and
their family members, they are in good hands. So just remember,
we have to be their voice.
Ms. DeLauro. Thank you. Thank you very, very much.
Appreciate it.
You are their voice as well. Thank you.
Congresswoman Haaland, thank you so much for being here
today. Appreciate your taking the time.
This is important. It is important for us to hear from our
colleagues about what are the areas that are of interest to
them as we move forward with the legislation.
So I just want to assure you that your total written
testimony will be placed into the record and ask you for your
oral testimony to be about 5 minutes.
Thank you.
----------
Wednesday, March 27, 2019.
WITNESS
HON. DEBRA A. HAALAND, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF
NEW MEXICO
Ms. Haaland. Thank you very much.
I am honored to be here with Mr. Cole--oh, I am sorry. Oh,
okay--as a Member of Congress. So I appreciate you.
Chairwoman DeLauro, Ranking Member Cole, and members of the
subcommittee, thank you for this opportunity to speak about
some key priorities in the labor, health and human services,
education appropriations bill. It is an honor to be here today,
and I appreciate the hard work that both of you always do.
My district is blessed with over 300 days of sun per year
and abundant wind. I urge you to support the swift transition
to clean energy and away from fossil fuels that damage public
health, which will create millions of high-wage jobs by
investing in worker training and retaining programs.
To prepare students for the 21st century, I encourage you
to improve teacher effectiveness, support low-performing
schools, and focus on proven efforts to improve student
outcomes. Our Nation's future depends on making sure that
college is possible, regardless of zip code, skin color, or
family wealth. I urge you to increase the maximum Pell Grant to
make colleges more accessible, and I know this because I would
never have graduated from college myself if it weren't for Pell
Grants.
I would also like to ask that you robustly fund Title III
of the Higher Education Act to provide essential support to
minority-serving institutions, including tribal colleges, and
Title V, which furthers the educational opportunities of
Hispanic Americans.
Families should not have to choose between paying their
energy bills and affording other necessities like food and
medicine. As you know, more than 6 million low-income
households, many of which include children, veterans, seniors,
and individuals with disabilities, rely on the Low-Income Home
Energy Assistance Program, or the LIHEAP program, to keep them
cool in summers and warm during cold winter nights.
While energy costs have risen, LIHEAP funding has steadily
declined, leaving many families unable to cover their energy
costs. I urge this committee to ensure that families have the
resources to cover their basic needs by providing
$4,700,000,000 for the LIHEAP program.
We must build an inclusive economy, and so I ask you to
scale up investment in YouthBuild, Job Corps, and Corporation
for National and Community Service programs that connect people
to education, employment, and service opportunities.
My district and State are beset with the opioid crisis and
strive to provide behavioral health services and addiction
treatment to those in need. I urge you to provide funding to
help communities deal with this crisis, including to prevent
suicide in all our communities, including Native American
communities, where the suicide rate for teenagers is among the
highest in the entire Nation.
As one of the first Native American women elected to
Congress and co-chair of the Native American Caucus, I urge you
to address the serious problems indigenous peoples face. The
Federal budgetary need for American Indians/Alaska Natives are
unlike any other constituency because tribal nations have a
unique government-to-government relationship with the United
States.
The U.S. Commission on Civil Rights has found significant
budgetary shortfalls in programs intended to assist American
Indian/Alaska Native populations, including those of the U.S.
Department of Health and Human Services and Education. To begin
to address this, I urge you to provide $2,000,000,000 for
Impact Aid, which provides payments to public school districts
whose tax base is impacted by Federal presence or activity,
including Indian reservations.
With nearly 93 percent of Native students enrolled in
public schools, Impact Aid provides essential funding for
schools serving Native students. I also ask you to provide
$198,000,000 for Indian education formula grants, which are
designed to supplement the regular school program and assist
Native students so they have the opportunity to achieve the
same educational standards and attain parity with their non-
Native peers.
I urge you to uphold the well-established government-to-
government relationship with Indian tribes that Indian tribes
have with the United States and provide funding for services
that most Americans have adequate access to.
And I thank you for this opportunity to testify.
[The statement of Ms. Haaland follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Ms. DeLauro. I thank you very, very much for your testimony
this morning in the areas that you have covered.
I think you know as well or maybe better than I that you
have the Congress' champion in the area of Indian Health
Services, Indian education, everything that has to do with the
quality of life and the well-being of Native Americans, and
proud to serve with Congressman Cole in that regard.
I am hopeful that I may be able to go on a trip with you
and with Betty McCollum when you do the--I would love to do
that and as well as with you, Congresswoman Haaland. Because I
think we don't spend enough time thinking about the concerns
and the problems that exist there and what happened to folks
during the shutdown and, you know, what a crisis that it caused
in a whole variety of areas in our tribal lands.
You have also talked about a number of other areas. We
won't have time to discuss it now, but I am interested in your
view and others because within the budget, there is a request
to consolidate the MSIs, the minority-serving institutions.
That is the strengthening Alaska Native and Native Hawaiian-
serving institutions, predominantly black institutions, Asian
American, Native non-tribal institutions, Hispanic, promoting
baccalaureate opportunities for Hispanic Americans. All of that
is being consolidated, and with about a $22,800,000 cut. So I
think it is going to be worth a conversation to sort out what
this consolidation means to minority-serving institutions.
LIHEAP has been eliminated. I come from a cold part of the
country and, you know, with temperatures below zero and so
forth. Your part of the country may be warmer, but what LIHEAP
has been all about is trying to accommodate, so forth.
So that, quite honestly, that has been attempted in the
past. We will not eliminate the LIHEAP program to be sure.
The YouthBuild program has been cut as well. Impact Aid,
and while that affects you and I know the ranking member, it
affects me in Connecticut because of the housing issues and
Federal housing programs. So once again, Impact Aid was
channeled for cuts the last time around, and we addressed that
issue.
We know we have budgetary concerns and constraints. We are
well aware of that, but some of these cuts in these areas that
I have laid out and some others, they have come up before. And
we have on a bipartisan basis addressed that and put in
resources where necessary, either increasing or level funding,
depending on what our opportunities are.
But you can be assured on the whole range of issues that
you have discussed here today that they are really at the top
of our list in making sure that your constituents--and you
speak on a broader basis as well. It is just not only about
Native Americans, about tribal lands, but it is about things
that address our entire country, and we are grateful for that.
And it is exciting to have you here in the Congress. So
thank you so much for your testimony this morning.
Ms. Haaland. Thank you, Madam Chair.
Mr. Cole. Thank you, Madam Chair.
I want to begin by noting almost everything our friend does
is an historic first. Just as she, when she presided over the
chamber, she was the first Native American woman to ever do
that, you are the first Native American woman of Congress to
ever testify before this committee and bring that. And I just
think that is so cool. I think it ought to be pointed out.
My mother was the first Native American woman elected to
the State Senate in Oklahoma. I know how important these
barriers are to be broken. I know how important it is, frankly,
that Native American girls see this kind of success on this
kind of stage. And so everything you do is significant. I mean,
you are a valued Member of Congress in anything. But to show
people that doors that have been closed can be opened and that
people can walk through them and accomplish things, you know,
for not only their people, but for all the people that you
represent is truly, truly, it is wonderful to watch. It is a
great thing that you are doing for millions of people that you
will never know, but they will know who you are, and it will
make a difference to what they decide to do with their lives
going forward.
In terms of these causes, and I know my friend, the
chairman, the chair, has always been helpful in these regards,
we have actually, I think, increased all the Native programs in
this thing. I remember asking last year my chief clerk, I said,
``Now how are we doing on Native?'' She said, ``Don't worry. If
it says Native American, the money is going up.''
And I say that because the need is so great, and we can
raise these areas and it is still we have a long, long way to
go. I would invite my friend, and I know she already is, and
frankly, everybody here, one of the things that we need to do
is--and I have testified before the Budget Committee on it.
Ms. McCollum has a terrific bill on forward funding for
Indian Health Service, which we do for the veterans, so that we
never, ever run the risk of Government shutdowns disrupting
critical lifesaving services to Native Americans and, frankly,
where we have a treaty and a trust obligation to fund that we
have agreed to.
And that ought to be, you know, at the top of our list.
Hopefully, we can get the sort of waiver we need from the
Budget Committee and move forward on that. I think there is a
good chance to accomplish that, at least through the House and,
hopefully, beyond that.
All these other things, we managed to increase. I will tell
you both the Obama administration, you know, wanted to cut
LIHEAP, too. It is a mistake. We are going to end up with
somebody that can't afford a heating bill or cooling bill dead
in their apartment in their eighties, and somebody is going to
ask, well, why didn't somebody do something about it?
These programs are really, really important in terms of
helping the least fortunate among us. We were able to get a
change, actually, in the formula to not affect the existing
funds, but any new funds, which we increased last year, to move
a little bit more toward States that have a heat problem, as
opposed to just cold. I think there has been historically I
wouldn't say a bias, but it is just something we are more aware
of now and something that we need to address.
And we need to do it in a way where we are not pitting
people against one another, but by if we gradually increase,
adjusting and moving money in this other direction as well. And
not anybody's expense, but in a way we can work together.
So I applaud my friend from New Mexico for this. I am very
proud to be her co-chairman of the Native American Caucus. She
is making a difference every day. And very proud, too, of
Representative Davids and her historic role here. You arrived
together and are doing great things for the country and
certainly for Indian Country together.
So I appreciate my friend coming, and so we will just check
off another historical first for my friend----
[Laughter.]
Ms. Haaland. Thank you, Mr. Cole.
Mr. Cole. And I look forward to her achieving many others
in her career going forward.
Ms. Haaland. Thank you so much. I am very grateful for your
support and for your caring. I mean, you know, some of these
things I know from experience.
My mom ended up in the emergency room because her air
conditioner wasn't working, and so it is----
Ms. DeLauro. It is personal.
Ms. Haaland [continuing]. You know, it is hot in the
summer. It is cold in the winter. It is--and I have to believe
that, you know, millions of other elder Americans suffer, are
suffering the same way.
So people's lives are my priority, I think I can say.
Ms. DeLauro. It should be all of our priorities. I would
just add that we have a program under SAMHSA, the mental health
services agency. It is called the National Child Traumatic
Stress Network. Ranking Member Cole knows about it, and this is
about kids who are exposed to violence or are victims of
violence.
And what we did last year is we increased funding for that
effort, and not enough in my view. We took a million of it for
Native American children. And so it is mental health issues,
and I think that is an area that we ought to try to carve out
in some way, you know?
So that we also did, as you know, a portion of the money
went to mental health services for the children who are
unaccompanied, who were separated at the border. And we also
try to deal with the children in Puerto Rico whose--really with
the devastating hurricane, there were children. I went there,
and they were afraid to go to school because they were afraid
if they went home, they wouldn't find anyone home.
But I think these children who are in need all over, and so
let us work together on increasing that funding.
Thank you for coming this morning.
Ms. Haaland. Thank you very much.
Ms. DeLauro. Thank you.
We invite our colleague Sheila Jackson Lee of Texas to join
us. And as I have said to everyone that we will put in your
entire testimony into the record and yield 5 minutes for your
oral testimony.
So thanks so much for being here today.
----------
Wednesday, March 27, 2019.
WITNESS
HON. SHEILA JACKSON LEE, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF
TEXAS
Ms. Jackson Lee. Let me, first of all, thank the ranking
member. This has to be the committee with the most fun, the
most opportunity for goodness.
And so I am going to be meteoric, and the reason is because
I am supposed to be the Speaker Pro Temp in about 2 minutes.
And I am sorry there were committees and other testimonies, and
in fact, they had me on the floor at the time you were--my time
was in this committee because they needed me to remain at that
time. So my apologies.
I want to associate myself with the congresswoman's
previous testimony on Native Americans and just support that
funding. I have worked very hard to include language in the
Violence Against Women Act to deal with the unique
circumstances of our friends who are Native Americans on the
either reservations or pueblos that they are on.
I wish to highlight educational opportunity and health and
research and security. And so let me speak very quickly on my
massive support for the $340,000,000 for strengthening
historically black colleges and PBIs. It is amazing the number
of disciplines that African Americans are able to go to
undergrad HBCUs. We produce the most number of lawyers, most
number of scientists, the most number of engineers in the
HBCUs, when someone asks the question why do we need them?
I support the robust funding for childcare. We realize the
number of women that do not have childcare. This is childcare
in development block grant, the TRIO program, and certainly the
program's $12,500,000,000 for the individuals with
disabilities, $30,000,000 for minority centers.
And I want to emphasize the $42,000,000 for the
historically black colleges capital financing. You know, we, as
members of the Congressional Black Caucus, worked on that over
the years. We thank this committee for seriously recognizing--I
had to give a historical speech about historically black
colleges. Most of them are colleges founded and their structure
in the 1800s.
So they are not recent new builds. They may have
opportunities from State legislatures to get a building here
and a building here, but their basic infrastructure, and I have
gone to most of them around the Nation, is old. And it is
wonderfully old. It is historic, and it should be preserved.
But students are going to classes there, and they need
Internet, and they need technology, expanded technology.
I support the $15,000,000,000 for Head Start. I have Head
Start facilities in my district. It is extremely important.
I am a champion for the community health centers,
$5,250,000,000. We have seen them grow in Texas. We have seen
them grow across the Nation. They are the best access, matched
with the Affordable Care Act, to healthcare, when you can walk
out of your house and go down the street and have good
healthcare.
The National Institutes of Health, the National Institute
of Minority Health, that was one of the first amendments I had
when I first came to develop culturally sensitive healthcare--
$310,000,000, $36,000,000,000. Certainly want to support
$35,000,000 with the childhood lead poisoning. It is an
epidemic in my district, as it is in many others. And the
reason is because older housing stock.
$15,000,000 for Violence Against Women, and then, of
course, the $55,000,000 for Homeless Veterans Reintegration
Program. I certainly am working with HUD. I testified before
them to include more money for the homeless, period. You cannot
go into any city--I am not going to just say my city. You
cannot go into any city without seeing the homeless with their
tent cities and others. We have got to find a solution to that.
I will let the rest of my remarks be reflected in my
statement, and I am very grateful to this committee.
I do want to just end on this note. This committee, Energy
and Commerce, so many of us can find good solutions to
healthcare. I am being hit by the administration's posture in
going in the Texas v. Azar case, which ultimately may put some
millions of Texans--we were the poster child for uninsured, way
before 2010--back in the desperate position of not having any
health insurance.
We did not take the expanded Medicaid. We have been
suffering. My health--various health departments, city, county,
et cetera, begged me to say is there any way we can take it?
And so I just hope that all that we can do in this committee to
improve healthcare for Americans that you all will do.
With that, I yield back.
[The statement of Ms. Jackson Lee follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Ms. DeLauro. Thank you very much, and thank you for your
testimony.
We are--so many of the issues that you have laid out, first
let me just say this. We are now waiting where we are going to
be on the overall budget allocation. Obviously, you know we are
going to fight like hell for the highest number. You have heard
me many times talk about Labor, HHS and being shortchanged. But
we have to wait until we see what happens when they waive the
budget caps and see what the direction we go in and looking for
parity between defense and nondefense spending.
But so many of the areas that you have focused on, we are
very cognizant of HBCUs. You also talk about TRIO programs.
This is an area where we have very strong support in a
bipartisan way. For TRIO, for Gear Up, for the Work Study
Program, this is--you know, that is the people who do, who sit
on this committee.
HBCUs, we have heard from folks, and so, so many of the
issues that you have laid out are taken very, very seriously
here in terms of HBCUs at the moment is level funded. But areas
where we can look at where we can, you know, increase. If we
can't, certainly do no harm in that regard. And above all, I
think the country will have an outcry against our eliminating
coverage for people who have a preexisting condition.
So thanks so much for your testimony this morning.
Ms. Jackson Lee. Thank you.
Mr. Cole. Thank you, Madam Chair.
And just I want to thank my friend for testifying and over
a range of, honestly, very worthy causes. I particularly want
to take this opportunity to thank you for the work you have
done in Indian Country in terms of the Violence Against Women
Act and trying to expand jurisdiction and give tribal
governments the ability to protect their own people when people
come on their land and commit offenses against their citizens.
You know, we wouldn't think twice if I went to another
State. If I went to Alabama and I committed a crime, I would be
apprehended by Alabama law enforcement people. I would be in
front of an Alabama jury. I would, you know, be in front of an
Alabama judge.
And if my rights were violated, I would have the right of
appeal under the Federal system, which is exactly what happens
in Indian Country, and my friend has been a leader in this long
before just this particular iteration of the Violence Against
Women Act, and I wanted to thank you for that.
I think your testimony--and again, there is nothing in your
range of issues that you raised that I don't support--but I
think it highlights the challenge that my friend the chair will
face and this committee faces. Boy, there are so many worthy
causes, and sooner or later, they are going to give her a
number, and she is going to have to make all those fit. And I
know she will, and I know she will work hard to get this
committee with the maximum number it can.
But I look forward, Madam Chair, and I want to thank you
for holding this hearing. I think it has been a helpful hearing
to get Members in and, again, to demonstrate once again there
is a lot of common ground on these issues. There are a lot of
people that want to work on them.
My friend has worked on them for many years in Congress,
and so, hopefully, we can advance forward. We can encourage
those people above our pay grade to get to a deal so they can
get you a number and we can go to work on the things that I
know both of us care about and our Members on both sides of
this dais care about as well, and certainly our friends in
Congress.
Look forward to working with you on it.
Ms. Jackson Lee. I am standing because I am giving you a
standing ovation, and I am running over to the floor.
Mr. Cole. I know you have got things to do. Don't worry.
Don't worry.
Ms. DeLauro. Get to where you need to go, and let me call
this hearing to a close.
Thank you very, very much.
[The statements for Congressman Langevin and Congressman
Woodall follow:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
TESTIMONY OF INTERESTED INDIVIDUALS AND ORGANIZATIONS
---------- --
Tuesday, April 9, 2019.
NATIONAL INDIAN EDUCATION ASSOCIATION
WITNESS
TERRI BISSONETTE, NATIONAL INDIAN EDUCATION ASSOCIATION
Ms. DeLauro [presiding]. Good afternoon. The subcommittee
will come to order.
Thank you all very, very much for being here, all of you,
those who are the witnesses and those who have accompanied our
witnesses. We are going to get underway, and I anticipate
because we really don't want to have people be waiting. It is a
crazy schedule around here these days, and I know our ranking
member, Mr. Cole, will be joining us as quickly as he can. So
we will get underway.
With that, I just do want to make a very brief opening
statement if I can. First of all, I want to welcome you all
again to the Labor, HHS, Education Appropriations Subcommittee.
This is our annual public witness day. It is always a great day
because it is so good to hear from people. So you have my
sincere gratitude and my appreciation to all of the witnesses,
both the witnesses who are in attendance and the ones who are
submitting written testimony for the record. I want to just say
a thank you for your hard work on behalf of millions of
Americans who benefit from programs that are funded through our
bill.
This afternoon we will hear from 24 witnesses covering all
aspects of this subcommittee's jurisdiction. As we will hear
today, the programs in the Labor, HHS, Education bill fund
life-saving biomedical research. They equip our Nation to deal
with public health emergencies. They level the playing field
for low-income children who are looking to learn, and they help
Americans get the skills they need to find a job in a difficult
economy.
Unfortunately, the budget proposal that we have before us
is proposing to cut a number of these programs by a total of
$12,700,000,000. I want to assure everyone here today that that
is not going to happen. We will continue to invest in these
important programs because the programs directly impact the
lives of Americans across our country, especially children,
families, and seniors.
As we draft a new bill for Fiscal Year 2020, it is
important to hear from the public about their top priorities.
In fact, I would say today's hearing is one of the most
important things that we do. I will note that we meet today
without a budget agreement for Fiscal Years 2020 and 2021.
Without an eventual agreement, non-defense discretionary
funding, which funds the programs that all of you care about,
would be cut by $55,000,000,000 next year. In addition, the
defense spending would be reduced by $71,000,000,000. So it is
in everyone's interest to come together, as we have since 2013,
to undo the harm that sequestration can bring to programs that
we will all care about.
What we do not have for your purposes, we do not have at
the moment any clarification on what the allocation will be for
Labor, Health, Human Services, and Education. We don't have
that number yet. So but we are moving in a direction where we
want to listen to what people's needs and concerns are, at the
same time trying to plan for when we do have that allocation.
There are many important programs under our subcommittee's
jurisdiction that you are advocating for this afternoon, but we
must have adequate discretionary funding to meet the
priorities.
So I am looking forward to today's testimony. And what I
will do is I am going to call people up one at a time, and you
will be recognized for 5 minutes. Your full testimony will be
made part of the record. And with that, let me invite Terri
Bissonette to please join us at the table.
The housekeeping things, I have to say, is to turn the mike
on, and when you are done, turn it off. [Laughter.]
Ms. DeLauro. And there we are. Okay.
Ms. Bissonette. Terri Bissonette. [Speaking native
language.] Chair DeLauro, Ranking Member Cole, and members of
the subcommittee, thank you for this opportunity to speak to
you today. My name is Dr. Terri Bissonette, and I am
Gnoozhekaning Anishinaabe of the Great Lakes region.
As an educator with over 15 years of experience, I am here
today on behalf of the National Indian Education Association.
NIEA is the most inclusive national organization advocating for
culturally relevant and educational opportunities for Americans
Indians, Alaska Natives, and native Hawaiians.
Our goal in testifying today is two-fold. First, we seek to
share with you an unprecedented opportunity for you to support
native students in Bureau-funded schools as these school
transition to education systems that highlight equity under the
Every Student Succeeds Act. Equity in education for native
students requires culturally-based education options that
provide opportunities for native students to flourish in the
classroom and beyond. Through ESSA, the BIE has an opportunity
to develop systems that reflect the students that they serve.
In order to implement this historic required by Federal
law, NIEA requests a one-time increase of $35,000,000 under
ESSA for the BIE to plan, develop, pilot, and implement a high-
quality, culturally-relevant assessment system for native
students. I am honored to make this request and hope to clarify
the critical importance of these funds for native students and
their communities.
Imagine Charlie, a first-grade student attending Jones
Academy, a tribally-controlled school operated by the Choctaw
Nation in Oklahoma. Because Charlie is in first grade, he is
not yet required to take annual assessments, but starting in
3rd grade, ESSA requires his school to test him and his
classmates in reading, mathematics, and science. Under ESSA,
these assessments provide data that allow the BIE and schools
to ensure comprehensive and targeted support when groups of
students need supplemental instruction and support.
Although Jones Academy is one of 183 Bureau-funded schools
across the country, Charlie's older classmates are taking the
Oklahoma-defined assessments because NCLB directed Charlie's
principal to test students using assessments from the State in
which Jones Academy is geographically located. Due to this
unique system, Bureau-funded schools, including Jones Academy,
utilize assessments that do not appropriately measure a
culturally-relevant curriculum, nor allow school officials,
like Charlie's principal, to compare how their students are
faring academically compared to other students throughout the
BIE system.
For nearly 20 years, the NCLB system has denied native
students access to culturally-relevant instruction, materials,
and assessments in BIE schools. It is time to fix this
inequity. Congress took critical steps to correct these
challenges through ESSA. The new statute requires the BIE to
conduct a negotiated rulemaking process to ``define the
standards, assessments, and accountability system consistent
with Section 1111 for the schools funded by the Bureau of
Indian Education on a national, regional, or tribal basis, as
appropriate, taking into account the unique circumstances and
needs of such schools and the students served by such
schools.'' Similar to States, the BIE must develop an
assessment system that measures progress in reading,
mathematics, science, including alternate assessments for
students with the most significant cognitive disabilities and
English proficiency assessments for English learners.
Despite these statutory requirements, current funding for
the development of high-quality, culturally-relevant education
systems in the BIE is inadequate as the Bureau-funded schools
have previously used State assessments. A new assessment system
is expensive. A new assessment system designed to support
newly-defined standards and address the unique needs of native
students is especially so. Analysis of available data show that
that even the smallest States have spent upwards of $30,000,000
to design new assessments, and these States did not invest in
the expertise required to align assessments with language and
culturally-based standard and curricula.
Currently, the BIE only receives $1,800,000 annually for
assessments from the U.S. Department of Education. This is
insufficient and would likely result in failure to comply with
requirements for high-quality, culturally-relevant assessments
under ESSA or in the depletion of critical funding from other
program areas that already have limited resources.
In closing, I reiterate how important it is that the
subcommittee allocate supplemental funding targeted toward the
specific need in support of report language. Thank you for your
time and interest.
[The information follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Ms. DeLauro. Thank you very much for your testimony. I just
might that, in fact, this is a new program under BIE, which is
$35,000,000, but I thank you for drawing attention to the
academic needs of the BIE students. Let me just say that we
will take a look at all of the requests, including any new
initiatives that are proposed. We have a number of programs
which, you know, provide a foundation for our public education
system, and to be very honest with you, they have fallen behind
over the years.
We do take that into consideration, but we are more than
happy to take a look at what new ideas there are, and at the
same time, how we keep up with existing programs. So we will
take a very, very hard look at this. Let me just say this to
you, that education is the great equalizer. It really is. It
doesn't pay attention to, you know, your gender, your religion,
your ethnicity, socioeconomic status. But what it is is your
God-given talent, and we want to make sure that we do have
clear and concise assessments of children and their talent so
that they can proceed forward.
So, again, I thank you so much for being here today, and
not only do I champion this cause, but you know you have a very
strong partner in Congressman Cole from Oklahoma and is always
concerned about what is happening to our Native American
population, and particularly your children. So thank you so
much for being here.
Ms. Bissonette. Thank you.
Ms. DeLauro. Thank you. If I can ask Brandy Dailey to come
forward? Hi, Brandy. You are recognized for 5 minutes, and your
full statement will be put into the record.
Ms. Dailey. Thank you.
Ms. DeLauro. Mike.
----------
Tuesday, April 9, 2019.
COUNCIL FOR OPPORTUNITY IN EDUCATION
WITNESS
BRANDY BRITTON DAILEY, COUNCIL FOR OPPORTUNITY IN EDUCATION
Ms. Dailey. Thank you, Madam Chair DeLauro, Ranking Member
Cole, and the rest of the subcommittee for speaking today. It
is a great honor.
Ms. DeLauro. Excuse me. We have been joined by
Congresswoman Barbara Lee from California. So anyway.
Ms. Dailey. As a first-generation college student, I would
not have been able to go to college, let alone graduate and
pursue an advanced degree, without the financial aid and
institutional support form Talent Search, one of the Federal
TRIO programs that continues to change the lives of students
across this country. What makes first-generation students so
unique is our need to keep a foot in both worlds, the one where
we come and the one we choose to join.
Like most first-generation students, I have developed an
outsider mindset, not quite belonging to the world of my
childhood and not quite belonging to the world of my peers. Up
until the age of 18, I spent most of my life in Lincoln,
Arkansas, a small town in northwest Arkansas. My family was
well known in this small town, but not in the way any child
would dream about. Both of my parents were drug addicts as well
as highly abuse and neglectful. With the help of our legal
guardian, my younger sister and I were able to put the mistakes
of our parents behind us.
Despite the stability that living with my legal guardian
brought, the experience itself was far from nurturing. Faced
with a husband who had recently been convicted, a son going
through expensive and intensive treatment for his life-
threatening leukemia, and a bankruptcy decree, my legal
guardian was struggling to manage her own problems, yet she was
gracious enough to take in my sister and myself. I learned the
hard way that every family has its own challenges, and
unfortunately merging two families together at the peak of
those challenges is bound to bring additional trauma and
complications.
To cope with the neglect and abuse I experienced growing
up, I turned to school as my outlet. From sports and science
clubs to student government and business societies, I was
determined to participate and serve as a leader in as many
organizations as I could. I always pushed myself to be the best
in and outside of the classroom because I knew that college
would be my only true way out of my situation.
Despite this awareness, I still faced extreme challenges. I
had no family members who had been to college and who could
help me figure out the application process, nor did I have any
way to pay for the application fees or rounds of testing needed
to hone the highest score possible. I barely understood what
the FAFSA was, and I remember praying that my legal guardian
would be able to file her taxes on time so I could at least get
that part completed when the time came.
Through my various high school extracurricular activities,
I had the opportunity to meet Representative Steve Womack, a
member of the subcommittee, at a Chamber of Commerce event
around 2012. While speaking with Representative Womack, I
mentioned some of the challenges that I had experienced--
parents who were drug addicts, physical and emotional abuse,
and years of dangerous neglect--expecting nothing except to
raise an eyebrow or two. My goal in meeting with him was really
to share, despite everything that I had endured, I was excited
for my upcoming college experience that TRIO Talent Search had
helped to make a reality.
Years later, during the spring semester of my senior year
in high school, my Talent Search director informed me that
Representative Womack had shared my story with his colleagues
in Washington, D.C. as an example of the positive impact of
TRIO. Of course I was flattered that Representative Womack had
used my story as an inspiring reason to support the program,
but I also knew that one day I wanted to go to D.C. myself and
share a different story, one in which overcoming personal
challenges was only a small part. In order to do that, however,
I needed a college education.
Talent Search helped me get through the complicated process
of applying to and paying for college. In fact, without support
from Talent Search, I would not have been able to pay for any
of the standardized tests or application fees involved in the
college application process. The Talent Search team at Lincoln
High School worked with me to navigate the overly-complicated
world of college applications and helped me to find the right
scholarships and programs in order to succeed.
What was surprising to me was the sheer amount of
assistance that Talent Search was able to provide me and other
students. Although I had been researching how to apply for
college on my own, I soon realized that I was aware of only a
fraction of the opportunities that Talent Search eventually
revealed. Thanks to Talent Search, I was accepted to Hendrix
College, a private liberal arts college about 2-and-a-half
hours from Lincoln. Even though I was no longer in the program,
my Talent Search director kept in touch with me throughout
college. She would send me inspirational messages and check in
every couple of months, helping me to continue believing in
myself when I struggled the most.
College is hard enough with a support system, but for
first-generation students like myself, TRIO provides a support
system that helps to make the whole process bearable. This
support meant more than ever because I knew that my time at
Hendrix was limited to my ability to pay for my education.
Therefore, I threw myself into my education, learning
everything I possibly could. Even with financial assistance, I
still needed to work four jobs in order to make it through to
graduation, and I did.
The assistance that I received through Talent Search as
well as the guidance on which scholarships and grants to apply
for helped me become a first-generation college graduate and to
leave school without the heavy loan burden that so many of my
peers face. As a result, I did not have to put the rest of my
life on hold. I am now a homeowner in Arkansas. Also, thanks to
scholarship and graduate assistantship opportunities, I am able
to finance my graduate education. I am currently in the last
phase of concluding my studies to earn a master's degree in
public administration and a graduate certificate in nonprofit
management at the University of Arkansas, Little Rock.
I know I am out of time, so I would just like to say I am
proud to be here as the first inaugural Thomas R. Malone
intern, and I am happy to answer any questions you might have.
[The information follows:]
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Ms. DeLauro. First of all, we are very happy to have you
here, and we thank you for coming forward and telling us your
story. That is often a hard thing to do, and we are glad for
your success. So many of us are first-generation college
graduates, so congratulations again to you.
I will mention that the TRIO Program has been cut about
$110,000,000 in the President's budget. The TRIO and GEAR UP
Programs, the proposal is to consolidate them into one State
formula grant, and if you did that, it would be $470,000,000
less. I can tell you that there is a strong bipartisan
commitment on this subcommittee for both TRIO and GEAR UP, and
we will be, again, taking a very hard look at that and are not
likely to see a cutback in those programs knowing how valuable
they are.
And let me ask my colleagues, Congresswoman Lee and
Congressman Mark Pocan of Wisconsin, if they have any
questions.
Ms. Lee. No, welcome. Thank you. I admire your courage for
being here. We will work to make sure these budget cuts don't
go through. You are a clear example of how they work.
Ms. DeLauro. Thank you very, very much. Best to you.
Melinda Mack? I think what we may have to do--Melinda, please
have a seat. We have three votes, which one has started
already. So it may be that we will, after Melinda, just break
and then dash quickly to do the votes and then come back. So,
Melinda, go forward.
----------
Tuesday, April 9, 2019.
NEW YORK ASSOCIATION OF TRAINING AND EMPLOYMENT PROFESSIONALS (NYATEP)
WITNESS
MELINDA MACK, EXECUTIVE DIRECTOR, NEW YORK ASSOCIATION OF TRAINING AND
EMPLOYMENT PROFESSIONALS (NYATEP)
Ms. Mack. Thank you. Committee Chairwoman DeLauro, Ranking
Member Cole, and members of the subcommittee, thank you for
this opportunity to discuss the importance of fully funding the
Federal Workforce Innovation Opportunity Act. My name is
Melinda Mack. I am the executive director of New York State's
Workforce Development Association, also known as the New York
Association of Training and Employment Professionals.
We were founded in the late 1970s and represent every
county in the State, and it includes local workforce boards,
providers of economic development, union training funds,
colleges, literacy, education, job training, and employment
service providers. Collectively, my members serve over a
million New Yorkers each year.
As you know we are in the tightest labor market as we have
been in decades, and any shortage of labor directly impedes our
State's ability to attract employers, hinders business
productivity and economic growth potential. The challenge
facing New York's economy is clear: there is not enough skilled
talent to meet the current and future needs of the labor
market. This is exacerbated by the fact that nearly a quarter
of the workers are at or nearing retirement age, and this will
particularly impact key sectors like healthcare and
manufacturing.
The most significant factor contributing to the skills gap,
however, is the lack of foundational and technical skills in
our talent pool. In our State, 40 percent of people have a high
diploma or less, and many more lack the necessary supports,
like child care and transportation, needed to move out of low-
wage work. As reported by our partners at the United Way, in
New York, 45 percent of households are living at or beneath the
basic cost of living, putting them one flat tire away from not
being able to put food on the table.
I share this because it is critical to understand the
problems that we are trying to solve. We believe that any New
Yorker who wants to work or to improve their skills to access a
better job should be able to do so, and that people with the
right skills are the answer to the skill shortage across the
United States.
Federal funding for the Workforce Innovation Opportunity
Act, also known as WIOA, is the catalyst for public and private
investment, regional coordination, and workforce system
alignment across the country, and certainly in our State, where
more than a half a million New Yorkers engage in the system
each year.
I would like to underscore that workforce development does
not have a one-size-fits-all approach, and we see this at the
local level. In New York, 33 local workforce boards, led by
more than 450 business leaders, identify regional issues and
coordinate proven practices, like industry partnerships, youth
programs, career pathways, and apprenticeships. In a State as
large and as diverse as New York, the design of WIOA provides
flexibility to local leadership to quickly respond to
employment demands within our communities.
This regional diversity means local boards must actively
match the right resources to the right talent by working with
partners, such as the WIOA Title 2 programs, to provide
educational pathways into employment. Last year, Title 2
funding changed the lives of more than 90,000 New Yorkers,
which is about 4 percent of the overall need.
By way of example, in the southern tier, there was an
extreme shortage of machinists. In response, the local
workforce board, and the regional adult education provider, and
the State-funded workforce intermediary partnered with four
local businesses to design an accelerated program. The program
invested Federal WIOA funding to provide case management and
training through the American job centers. The contextualized
adult basis education accelerated skill acquisition and
addressed literacy and numerous deficiencies, all while deeply
engaging in employers in curriculum development. The
partnership has grown to 14 employers at a minimal cost of
around $5,500 per participant and has returned more than
$800,000 in wages back to the community.
This is just one example. WIOA is also vital in connecting
individuals often left out of the labor market with job
opportunities and supports necessary to maintain employment.
The New York system overwhelmingly serves low-income
individuals, but also provides access to education, job
training, and employment to individuals with disabilities,
those with low basic skills or are justice involved, and many
others. Access to hope, job training, and meaningful employment
changes lives and adds real value into our economy.
The power of the national workforce system is real, and as
the economy shifts, its role will grow in importance.
Technology and automation will reshape the occupational
landscape and the skills necessary to compete. Just in New
York, it is estimated that 4,800,000 occupations may be
eliminated or will need to adapt to the next 20 years. It is
imperative that we take this opportunity to assist the millions
of Americans, get off the sidelines, and gain cutting-edge
skills so they do not get left behind.
However, despite overwhelming support for investment in
workforce development, Congress has yet to meet the authorized
spending levels for WIOA. In fact, funding for WIOA and its
predecessor, the Workforce Investment Act, has been in decline
by more than 43 percent in the last 15 years. On behalf of my
colleagues, I urge you to fully fund Titles 1, 2, 3, and 4 of
WIOA at the levels authorized by Congress in Fiscal Year 2020
Labor, Health, and Human Services, Education and related
agencies appropriations bill. Without a spending cap or budget
deal in place, these programs are at serious risk for harmful
sequestration when the Nation can least afford them.
I also want to highlight concerning language contained in
the President's 2020 budget that would give governors more
authority to re-designate and consolidate local workforce
boards. As we have described, Congress knows local economies
are best solved by local actors. Finally, I have described a
small snapshot of what is being done on the ground. Imagine
what we could do for America's economic competitions if we
doubled this effort.
Thank you. I am happy to answer any questions.
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Ms. DeLauro. Thank you very much, which is why it is a
mouthful. That is why we say ``Labor, HHS.''
Ms. Mack. Yes, it is.
Ms. DeLauro. It makes it a lot easier for us to get through
any conversation of reading of anything. You said two things.
One is access to hope. You said a lot of things, and the power
of workforce training, both imperative as we move forward.
Programs that you have talked about are level funded in the
President's budget, and we are aware of that. We are also very
much aware that 70 percent of people in this Nation do not have
a 4-year college degree, and it is really our responsibility to
make sure that they have the opportunities in order for them to
realize their dreams and their aspirations. It is just the
right thing to do.
So, again, there is a heavy emphasis on jobs, job training,
and how we can move forward to allow people to have the
economic security they need in their lives, and the work that
you do on the ground is so critical. Please know that and how
grateful----
Ms. Mack. Thank you.
Ms. DeLauro [continuing]. We are to you, to all of the
workforce boards and the work that they do every single day in
giving people hope and giving people promise. Thank you very,
very much.
Ms. Mack. Thank you so much.
Ms. DeLauro. I think I have to go vote. We will return
very, very quickly to resume.
[Recess.]
Ms. DeLauro. We are back. The committee is back in session.
We are going to go a little bit out of turn here because of
airline flights, so let me now ask Brian Wallach, I Am ALS, to
join us. Thank you for being here, Brian.
----------
Tuesday, April 9, 2019.
I AM ALS
WITNESS
BRIAN WALLACH, I AM ALS
Mr. Wallach. Thank you, Madam Chairwoman. Madam Chairwoman,
thank you for the opportunity to testify you before you today.
My name is Brian Wallach. I am 38 years old. At the age of 37 I
was diagnosed with ALS. My diagnosis was a shock to us because
I have no family history of ALS, and it turns out the 90
percent of ALS patients don't either. That is because ALS, like
cancer, can and does affect anyone. In fact, in just the 5
minutes that I have before you today, another person will be
diagnosed with ALS.
I am the father of two young girls, a 1-year-old and a 3-
year-old. In the aftermath of my diagnosis, Sandra, my wife,
who is here with me today, and I cried and we held our family
tight. We did so because being diagnosed with ALS today is a
death sentence. There is no cure. I will not see my daughters
grow up. There is no cure not because ALS can't be cured, but
because we have underfunded the fight against ALS year after
year after year.
So I am here today to ask you and this committee to rewrite
the ALS story. I am here as co-founder of I Am ALS, a patient-
led, patient-centric movement to defeat ALS. I am here on
behalf of my family and the incredible ALS community. I am here
to ask you to see us, to hear us, and to fully fund our fight
against ALS.
A year and a half after my ALS diagnosis, I am, as Lou
Gehrig famously said, lucky. I am alive. Nearly one-fifth of
those diagnosed the same day as me are dead. At this time next
year, nearly half will be dead. I am also lucky in that I can
still walk, speak, and hug my young daughters, and I am lucky
to be alive. As you can hear my voice, my body is still in the
family. Despite this, I sit here before you filled with hope.
Why? Because we can actually cure ALS. How? By fully and boldly
funding of the fight against ALS just like this government with
the fight against HIV 30 years ago. And when you do, it will
help unlock cures not just for ALS, but for Alzheimer's,
Parkinson's, and beyond.
The research this subcommittee has funded over the last
decade enables me to say and truly believe that it is no longer
a question of if we can ALS, but when. The opportunity to end
ALS is here now, but to do so requires significant, bold, new
investment to make the answer to win as soon as possible. Now,
in 2017, NIH spent approximately $13,000 on ALS research per
person in the U.S. who died from ALS. We spend between 3 to 16
times that amount on diseases that kill a fraction of the
people that ALS does. We spend between 5 to 10 times that
amount in public and private care for the people living with
ALS, much of which is shouldered by the families fighting ALS.
Imagine with me for a moment if we spent the same amount on
cures for ALS that we do caring for those given this death
sentence. If we did, we would finally end ALS. If we did, I
will have a chance to see my daughters graduate from
kindergarten, high school, and college. This committee has the
power to make that happen. I beg you to give me and the tens of
thousands of Americans living with ALS that chance. We can't
wait another decade for a cure. If we do, more than 1,300,000
across the world will die from ALS. That number includes me.
I know this committee doesn't often hear from people with
ALS. You don't because ALS is a relentless churn. We are
diagnosed. We die quickly. We don't have time to advocate.
Every day is a fight for survival, and it is a fight we will
all lose, all of us. This is simply not acceptable. This
committee has the power to change that reality. This committee
has the power to help save our lives.
I thank you for having the courage to do so, and I look
forward to working with you and each of you on this committee
to finally defeat ALS. Thank you.
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Ms. DeLauro. Thank you very, very much, Brian. We are all
in this room lucky to be able to hear from you. I mean that
very, very sincerely, and we will work with you. We want you to
see your daughters graduate from kindergarten and beyond. And I
promise you that we will fight for your survival and for the
survival of the millions of others who find themselves in the
same situation.
Science and research has the power to unlock discoveries
for a cure. We can't guarantee it. We can't put a time frame on
it. But what we can do is to make a very, very serious
investment in making sure that we can unlock the mysteries of
ALS. God bless you and your family for your strength, for your
courage, for your advocacy. We are all in your debt. Godspeed.
Lucero Castaneda. Thank you for being here today, Lucero.
----------
Tuesday, April 9, 2019.
NATIONAL COUNCIL FOR COMMUNITY AND EDUCATION PARTNERSHIPS (NCCEP)
WITNESS
LUCERO CASTANEDA, NATIONAL COUNCIL FOR COMMUNITY AND EDUCATION
PARTNERSHIPS (NCCEP)
Ms. Castaneda. Good afternoon. Chairwoman DeLauro, Ranking
Member Cole, and members of the subcommittee, I am grateful for
your invitation to testify on behalf of the Gaining Early
Awareness and Readiness for Undergraduate Programs, or GEAR UP
Initiative, administered by the U.S. Department of Education.
As a result of the subcommittee's longstanding bipartisan
support, GEAR UP is serving nearly 700,000 students across 45
States. On behalf of our students, families, and educators,
thank you for your leadership. My name is Lucero Castaneda. I
grew up in Von Ormy, Texas, a small rural town outside of San
Antonio. Our community was rather poor, and in my family, money
was always an issue. We were, however, rich in other more
important ways. My father worked backbreaking jobs, and my
mother worked extremely hard, too. She was a second mother to
so many in a community that sorely needed role models.
Being older now, I more fully appreciate the loving
sacrifices they made for us. They knew that education was a
passport to a better life. When I began middle school, it was
obvious that success wasn't a given. My classmates were already
feeling disconnected, expectations for us were low, and the
problems we faced at home and in the community withered our
aspirations. Few of us could even imagine college or a
meaningful career as being a possibility. GEAR UP helped change
that.
Allow me to use my own high school to illustrate GEAR UP's
impact. Of Somerset High School's class of 2018, of the cohort
served by Texas GEAR UP, 96 percent graduated. A year earlier,
graduates earned $1,900,000 in scholarships and financial aid,
whereas our GEAR UP class earned $9,000,000. Most importantly,
70 percent of our GEAR UP class enrolled in postsecondary
education, an increase of 23 percent over the prior year.
National GEAR UP outcomes are equally impressive. So, no, GEAR
UP works everywhere.
The GEAR UP staff guided us to take the toughest courses,
supported us with tutoring and mentoring, helped us explore
career interests, and taught us how to make the most of our
education. We spent our summers in academic camps at colleges
throughout the State. GEAR UP worked with our school leaders to
create new academic programs, provided professional development
for teachers, and reduced our counselor-to-student ratio by
half. GEAR UP invested their time engaging families so they,
too, could serve as stronger supports.
GEAR UP helped each of us to create a plan for life after
high school be it a high-quality postsecondary certificate,
associate's, or a bachelor's degree. Early on I told GEAR UP
that I wanted to go to an Ivy League college. I wasn't told I
was too poor or that I didn't fit the right profile. They said
let's make a plan, so we did. With GEAR UP, I graduated
valedictorian of my class, battalion commander of the U.S. Army
Junior Reserve Officer Training Corps, and was recognized
nationally as the GEAR UP Youth of the Year in 2016. Thanks to
the financial aid I was able to receive through the Alexander
Hamilton Scholars Program, the Gates Scholarship, and my
university, all of my college expenses are covered. I am
especially proud to share that my classmates are doing amazing
things as well.
My father sacrificed his high school education so he could
support his family. Today my older brother is nearing
graduation at Texas A&M-College Station, and is a proud member
of the National Guard. My mother is just a few credits away
from her bachelor's degree from Texas A&M-San Antonio. And last
fall, I began my freshman year at Harvard University. Clearly,
education has the power to transform lives, families, and
entire communities.
Success requires hard work and opportunity. Having met GEAR
UP leaders and students from nearly every State represented by
this subcommittee, I can attest that your students are ready to
put in the work. Opportunities, however, can be harder to come
by. That is why we are so deeply concerned about the
Administration's proposal to eliminate the GEAR UP Program. At
just over $500 per student served, GEAR UP is a modest
investment that yields a powerful return. I respectfully urge
the subcommittee to consider increasing GEAR UP funding to at
least $395,000,000 so that over 70,000 new students may be
afforded the same life-changing opportunities you afforded me.
Thank you for the opportunity to speak with you this
afternoon, and I will happy to respond to any questions.
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Ms. DeLauro. Thank you so much, and, boy, you really are a
great advocate of the GEAR UP Program. And GEAR UP and Harvard
University, that is really spectacular.
Ms. Castaneda. Thank you.
Ms. DeLauro. Let me just, you know, you mentioned the
President's budget eliminates the GEAR UP Program. Be assured
the GEAR UP will not be eliminated. I can't tell you this
afternoon what number will be put on, but, again, the ranking
member, in a bipartisan way, this subcommittee, is committed to
TRIO, to GEAR UP, to Federal work study, to the programs that
allow an opportunity for youngsters to succeed. That is why we
are here. That is what the role of government is all about, and
that is historically what government has done is to provide an
opportunity for success.
So thank you. Your advocacy here is really critically
important and for members to see your success and how others
can be successful as well. And I will ask my colleagues,
Congresswoman Barbara Lee and Congresswoman Frankel, if they
have any questions or comments for you.
Ms. Castaneda. Thank you so much.
Ms. DeLauro. Take care. Go get them. [Laughter.]
Shawonda Swain. Now, I would like to offer a warm welcome
to a fellow resident of Connecticut, Shawonda Swain. She is
vice president, chief operations officer at the Boys and Girls
Club of Hartford. Before coming to Hartford, she worked with
the Madison Square Boys and Girls Club in Brooklyn, New York
for 25 years. She was a member herself. Now, at the Boys and
Girls Club of Hartford, Shawonda oversees operations for all 10
sites, including the staff, facilities, programs, and budget.
With her dedication and leadership, the Boys and Girls
Clubs touch the lives of nearly 1 in 3 children in the Hartford
Public Schools. So it is an organization that provides more
than 10,000 children and teens a year with academic enrichment,
character, and leadership development , and the promotion of
healthy lives. Shawonda, you are a force. We are delighted to
be with you today and to hear from you on 21st community
learning centers. Please. You are recognized for 5 minutes.
----------
Tuesday, April 9, 2019.
BOYS & GIRLS CLUBS OF HARTFORD, CONNECTICUT
WITNESS
SHAWONDA SWAIN, VICE PRESIDENT AND CHIEF OPERATING OFFICER, BOYS &
GIRLS CLUBS OF HARTFORD, CONNECTICUT
Ms. Swain. Thank you. Chairman DeLauro, Ranking Member
Cole, and distinguished members of the committee, thank you for
the opportunity to testify at today's hearing about the
importance of the 21st Century Community Learning Centers, a
program through the Department of Education.
As you mentioned, my name is Shawonda Swain, and I am a
product of the Boys and Girls Club. Growing up in a single-
parent household in Brooklyn in a neighborhood that wasn't safe
for children to play outside could have been much worse if it
wasn't for the Boys and Girls Club. It was there that I gained
many trusted mentors, found my voice, and learned about a path
to a better future.
Boys and Clubs have long been an organization that believes
in partnering with schools to assist in academic success for
all our community members. Today I am here to talk to you about
the importance of the programs for youth, like the 21st Century
Community Learning Center at the Boys and Girls Club. We would
like to see continued investment of $1,200,000,000 in the Labor
2020 Health and Human Services and Education appropriations
bill.
Every day, 11,300,000 children are alone and unsupervised
after school when juvenile crime peaks. 21st Century Community
Learning Centers, which I will refer now to as 21st CCLC to
save time, support before, after school, and summer programs at
Boys and Girls Clubs that provide youth with valuable
resources, such as tutoring, academic support, and enrichment
programs, STEM, and physical activities.
In 2016, 21st CCLC funds supported 565 sites at 212 boys
and girls clubs in 48 States. Nationally, Boys and Girls Clubs
provide access to out of school-time programs for over
4,000,000 annually. There are 4,300 clubs located in every
State in nearly all congressional districts across the country,
in urban and rural communities, within schools and public
housing, and on native lands, and on military installations. In
the State of Connecticut, there are 31 Boys and Girls Clubs
that serve about 86,000 youth each year.
Let me take a minute to tell you about my club. For over
160 years, the Boys and Girls Club of Hartford has provided a
positive environment for children and teens throughout the City
of Hartford. We serve nearly 1 in 3 children in the public
schools through membership and community outreach, with
programs focused on academic enrichment, character, and
leadership development, and healthy lifestyles. Thanks to the
investment prioritized by the subcommittee, we are able to run
the 21st Century Community Learning Center Partnership with our
local schools, serving over 200 youth. Seventy-four percent of
those families are headed by single parents, and 83 percent are
eligible for free or reduced lunch. Fifty-four percent of those
families receive public assistance.
In the past 5 years, unemployment in the neighborhood the
Boys and Girls of Hartford serves has ranged from 15 to 19
percent, far exceeding Hartford's rate. Our 21st Century
Program helps to reduce the negative impact of neighborhood
conditions that can compromise student achievement,
development, school success, and safety. Working with the
principal, we are able to provide tutoring, case management,
fund supplemental academic support services, positive adult
relationships, family engagement activities, social and
emotional support.
The Boys and Girls Club uses this much-needed funding to
prepare youth with life skills, and working with businesses,
communities, support services, and caring individuals, we also
sought out a workforce development program as early as middle
school. By providing guest speakers, job shadows, career fairs
for future development, we help develop the expectation of
graduation and success. For every dollar invested in the Boys
and Girls Club, $9.60 is returned to the community in current
and future programs. We can demonstrate the impact of Boys and
Girls Clubs' programs.
As you can see, the value of this program helps change the
lives our youth and prepare them for great futures. I
respectfully ask that you invest in youth and support the 21st
Century Community Learning Center at $1,320,000,000. Thank you
again for the opportunity to testify today, and as you consider
your priorities for the coming year, please remember that our
kids must come first. Thank you.
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Ms. DeLauro. Thank you. An eloquent spokeswoman you are for
children in general, but for the after school programs and for
the Boys and Girls Clubs. I have a particular spot in my heart
for the after school programs. I taught at the Conte Community
School in the after school program many, many, many years ago,
and it was one of the best experiences of my career.
So once again, I would tell you--I think you know this--the
President's budget proposes to eliminate the program. Be
assured that the program will not be eliminated. As I said, I
can't give you, you know, a time and dollar amounts, but it
will not be eliminated. The after school program is valuable,
and it is valuable not to warehouse our children, but to give
them a place in which they can thrive, in which they can grow,
and we can deal with child development in that space. So thank
you. My colleagues?
Ms. Lee. Well, thank you very much for your very brilliant
and powerful testimony, and I am very proud of you. Secondly,
let me say I don't know where I would have been had it not been
for the Boys and Girls Club of East Oakland. As a single mom
raising two small kids on public assistance, my sons not only
survived what we were dealing with in East Oakland, but they
thrived, and they are phenomenal young men. And it really had a
lot to do with what they learned and they were supported
through the Boys and Girls Club. So thank you again, and thank
you for being here.
Ms. DeLauro. Congresswoman Frankel.
Ms. Frankel. Let me just say the Boys and Girls Club does a
great job in South Florida. Thank you very much.
Ms. Swain. Thank you.
Ms. DeLauro. Now, let me see if I have this right. Is it
Mairead? Do I have the pronunciation right?
Ms. Brennan. It is like ``parade,'' but with an ``M.''
Ms. DeLauro. Mairead.
Ms. Brennan. Yeah.
Ms. DeLauro. Thank you. I got it. Okay. [Laughter.]
Mairead Bernadita Brennen. Thank you. And, again, Mairead
is a fellow townie, New Haven, Connecticut. Born and raised in
New Haven. First-generation college student at Yale University.
She won the New Haven Promise Scholarship in 2015. Pursuing a
bachelor of science in environmental studies. Involved on
campus. High School, attended the Peabody Museum of Natural
History's Evolutions After School Program. Participated in
their Environmental Leaders Program and worked a museum
interpreter. Today she will discuss the importance of the
Office of Museum Services funding with the Institute of Museum
and Library Services.
We are so glad to have you here. On a personal note,
growing up in New Haven, there was a time when Yale University
was not in the purview of young girls and women, but
fortunately they have seen the light. [Laughter.]
And a townie to boot, so this is really great. Please go
forward. You are recognized for 5 minutes.
----------
Tuesday, April 9, 2019.
EVOLUTIONS AFTER SCHOOL PROGRAM STUDENT/YALE PEABODY MUSEUM OF NATURAL
HISTORY, NEW HAVEN, CONNECTICUT, ON BEHALF OF THE AMERICAN ALLIANCE OF
MUSEUMS
WITNESS
MAIREAD BERNADITA BRENNAN, EVOLUTIONS AFTER SCHOOL PROGRAM STUDENT/YALE
PEABODY MUSEUM OF NATURAL HISTORY, NEW HAVEN, CONNECTICUT, ON
BEHALF OF THE AMERICAN ALLIANCE OF MUSEUMS
Ms. Brennan. Good afternoon, Chairwoman DeLauro and Ranking
Member Cole. Thank you for inviting me to testify today. My
name is Mairead Bernadita Brennan. I am one of the many
beneficiaries of the Office of Museum Services-funded
Evolutions After School Program at the Yale Peabody Museum of
Natural History in New Haven, Connecticut.
I am here today on behalf of the American Alliance of
Museums, AAM, which represents U.S. museums. I am here to
request the subcommittee provide the Office of Museum Services,
OMS, within the Institute of Museum and Library Services, IMLS,
with at least $38,600,000, its recently reauthorized level, a
reauthorization that was enacted late last year with
overwhelming bipartisan support.
I participated in one of the many museum programs that has
benefitted from OMS funding. The Evolutions After School
Program is a free science and college-focused program that
provides academic support and science career exploration for
120 students from New Haven and West Haven Public School
districts. As an aspiring first-generation college student, the
experience was invaluable since it exposed me to different
science careers I would not have otherwise known about it. Even
more importantly, it normalized the idea of pursuing those
careers myself.
Every year we were able to partake in science activities,
field trips to colleges and universities, and learned to
conduct research to produce our own public science exhibitions.
We had tremendous opportunities to visit places both inside
Yale and also within the broader network of museum education
programs. My peers and I formed a community of growing young
leaders who advanced the mission of the Peabody to bring the
knowledge it holds to a broader audience. As residents of
neighborhoods surrounding Yale University, we brought a unique
and essential perspective and enabled the museum to better
bring science and local communities together.
Evolutions normalized pursuing the sciences while also
giving us the space to discuss the barriers to access
disadvantaged students face. It was one of the only spaces I
felt I had the support to combat the unequal distribution of
educational opportunities in New Haven. My educational
experiences showed me how grades can dramatically and
negatively impact what children dream they can achieve. Grades
only show part of what can be achieved within the walls of a
classroom, but Evolutions recognizes the brilliance in youth
that can be unleashed outside those walls by explicitly stating
that academic achievement is not a factor in the application
process.
This program was the first time I witnessed that
inequalities and intergenerational trauma was not only taken
seriously, but also used to dismantle outdated ideas of who
deserves extracurricular opportunities. Because I participated
in Evolutions as a teenager, I am confident in the validity of
my experiences and how I can use them to enact real change. As
a Yale University student, I continue to use the skill sets I
gained from the Evolutions Program and firmly believe it helped
me to be more fearless in my goals. The Evolutions Program was
only possible because of funding from the IMLS Office of Museum
Services.
My educational experience is borne out by national data.
Museums are economic engines and job creators. U.S. museums
support more than 726,000 jobs and pump $50,000,000,000
annually into the economy. The financial impact that museums
have on the economy in Connecticut is $834,000,000, including
10,229 jobs. For Oklahoma, it is a $405,000,000 impact,
supporting 6,404 jobs.
IMLS is the primary Federal agency that supports the
Nation's museums. This small program is a vital investment in
protecting our Nation's cultural treasures, educating students
and lifelong learners, and bolstering local economies The IMLS
grantmaking process is rigorous and competitive, and these
grants leverage State, local, and private funding. We are
grateful for the $34,700,000 in funding for the OMS in the
Fiscal Year 2019, but I note that it is well shy of the roughly
$120,000,000 that museums request annually through highly-rate
grant applications.
In closing, I highlight a recent national poll showing 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, worthy of Federal investment, and I
am living proof. I also share with you, for the record, a
bipartisan letter to the subcommittee supporting funding for
OMS signed by 178 of your House colleagues. If I can provide
any additional information, I would be delighted to do so.
Thank you again for the opportunity to testify today.
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Ms. DeLauro. Thank you. Thank you for your eloquence. Thank
you for your poise and your confidence, your self-confidence.
It clearly works. And I will note that you are pursuing a
bachelor of science in environmental studies and concentrating
in urban design. You know, we talk a lot about STEM programs,
about how we need to engage young women in science, et cetera,
and keep those doors open. I think you are the spokesperson for
this effort, which defies imagination, quite frankly, that we
would eliminate the IMLS Program.
It is amazing to me that, your word was, you know, ``houses
our museum's cultural treasures.'' I would go a step further,
and it is about museums, et cetera. It is our humanity. It is
who we are. It is what we are about. It is the richness of our
lives. And we can't be about the business of destroying that.
When you take a look at Europe, those efforts, museums,
libraries, are all state-funded because they know of the value.
And your point at the end, if you can't get them on the
humanity, let's get them on the economics of the issues----
[Laughter.]
Ms. DeLauro [continuing]. So that they know it has economic
value. Do you know what you are doing? This is your senior
year? Where are you going?
Ms. Brennan. Currently I am trying to figure out if I am
going to graduate school to hopefully to pursue a master's
degree in architecture.
Ms. DeLauro. Okay. Lovely. Rhode Island School of Design is
great. That is a plug. [Laughter.]
It is a different State, but it is a great school.
[Laughter.]
No, no, I didn't, but I just know it is a great place.
Thank you for being here. And, you know, I am just going to say
this. It used to be a time growing up in the City of New Haven
where, you know, myself and my folks, we believed that Yale was
not a place that was for us, that wasn't open to us. So it is
wonderful, wonderful to see you here and cracking those doors
open. Congratulations.
Ms. Brennan. Thank you.
Ms. Lee. I associate myself with your remarks, and just say
that it is wonderful to see a young woman also who really
understands and values the importance of our museums, leading
the charge. Thank you again.
Ms. DeLauro. Congresswoman?
Ms. Frankel. Thank you.
Ms. DeLauro. Brian Lovell. Thank you. Thanks for being
here. You are recognized for 5 minutes.
----------
Tuesday, April 9, 2019.
UNION COUNTY PUBLIC SCHOOLS (KY)
WITNESS
BRIAN T. LOVELL, ASSISTANT SUPERINTENDENT, UNION COUNTY PUBLIC SCHOOLS
(KY)
Mr. Lovell. Thank you. Thank you, Madam Chair, Ranking
Member Cole, and members of the subcommittee for inviting me to
testify today. My name is Brian Lovell, and I am the assistant
superintendent of compliance and workforce development for the
Union County Public School District in Kentucky.
As a public school educator, I would be remiss not to first
offer my thanks to the value that you have placed on the public
education system, particularly during your recent hearing with
the Secretary of Education. I sincerely appreciate your
validation of our public school teachers across the Nation,
that their work is important, it is appreciated, and it
matters.
Sufficiently funding and strengthening our public education
system will enable it to continue to be the great equalizer
just as Horace Mann, who once served in this institution,
envisioned and as Madam Chair alluded earlier. At the same
time, in the 21st century, education and workforce development
are inextricably interconnected.
In our small and rural community, there is a significant
demand for skilled labor among our largest employers,
specifically for welders and electricians. Unable to find local
workers with these specific technical skills, these employers
turn to the Earle C. Clements Job Corps Academy in Morganfield,
Kentucky. As an executive once told me, ``You will not find a
more nimble partner than Job Corps.'' Recognizing that Job
Corps was a pipeline to good-paying jobs in our community, our
district expanded our existing co-enrollment partnership with
the Clements Academy. When we co-enroll our students in Job
Corps, we know they are in good hands, and I say that not only
as an assistant superintendent, but as a parent who entrusted
Job Corps with the future of two of my owns sons.
As an educator myself, I have spent the better part of my
career pursuing advanced formal study. When I became a parent,
I expected to afford my children those same opportunities.
However, while my sons both have incredible talent, the
traditional model just did not draw upon those talents, and I
began to realize that postsecondary classroom education was not
something that my sons were interested in pursuing. Simply put,
they wanted to work, and they wanted the skills necessary to be
paid well to do it. They needed an alternative pathway to
employment.
This is not a story that is unique to my sons. Hundreds of
students in our district and millions more nationwide are
looking for alternatives to the traditional secondary to
postsecondary pathway. For some, this may have to do with cost,
but often it is because the traditional classroom learning
model does not align with their needs and goals. My sons came
to us through Kentucky's foster care system, which offers free
tuition to in-State colleges, universities, and vocational
schools to those formerly in foster care. Nonetheless, they
chose to attend Job Corps because they knew they would receive
hands-on and personalized wraparound instructions and services.
My oldest son, Aaron, graduated Job Corps last year, and
his younger brother, Brandon, graduated this year. They each
landed good-paying jobs within a week of completing, which is
typical of Job Corps. Nationally, 85 percent of Job Corps
graduates transition into employment, higher education, or the
military. There is nothing like watching your children
experience success and wear that success proudly.
The experiences that my children received in a supportive
team environment at the Earle C. Clements Job Corps Academy is
unlike any that they have known. Job Corps' model works. It
worked for my son, it worked for employers in Union County, and
it works for the Nation. Now is not the time to scale back Job
Corps. Rather, we should expand our support so that millions
more opportunity youth can have an alternative pathway into
employment that is tailored to both their needs as learners and
the needs of their future employers.
I have often quoted the warrior philosopher, Miyamoto
Musashi's words, both in my role as an educator and as proud
Pops to my five sons, when he said, ``There is more than one
path to the top of the mountain.'' I humbly ask for your
continued support of the Job Corps Program and for its
continued full funding in the current budget cycle and for many
years to come so that it may continue providing opportunity
youth a path to that mountain top.
I am grateful to the chair, the ranking member, and
subcommittee for supporting Job Corps over the years, and, in
doing so, enabling my sons to begin their careers and achieve
their dreams. Thank you for the opportunity.
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Ms. DeLauro. Thank you very, very much. Indeed, Job Corps,
it is an alternative pathway to success. It is also a very,
very unique experience. And, again, on the subcommittee there
is bipartisan support for Job Corps, though the budget has
about a plus $700 cut to the Job Corps Program. And in all
honesty, I will just say I am a strong supporter of Job Corps,
but I want to make sure that they are working to the do the job
that they do. I think you would concur with that, and that is
what we need to do is to look at them, to evaluate them, and to
see if they are providing the kinds of experience that your
boys have had in order to be able to succeed.
It is a good program. It was a good concept back when it
was implemented, and it is still a very strong component of our
educational system today. So thank you very, very much for
being here and being such an advocate. Congresswoman Lee?
Ms. Lee. Thank you for being here. Job Corps in my area is
a remarkable organization, and actually many of the students
who are participating in Job Corps oftentimes come to my office
and do field placements. And I have just seen how they grow,
and learn, and move forward, and get good-paying jobs. So
hopefully we will be able to put this together this year.
Ms. DeLauro. Congresswoman Frankel?
Ms. Frankel. I just want to say thank you.
Mr. Lovell. Thank you all.
Ms. DeLauro. Sancia Celestin? Sancia, you are recognized
for 5 minutes. Thank you.
----------
Tuesday, April 9, 2019.
NATIONAL COLLEGE ACCESS NETWORK
WITNESS
SANCIA CELESTIN, NATIONAL COLLEGE ACCESS NETWORK
Mr. Celestin. Okay. Chairwoman DeLauro and distinguished
members of the Appropriations Subcommittee, my name is Sancia
Celestin. I am a third-year student at George Mason University.
I am also a scholarship recipient of the Access College
Foundation, a member of the National College Access Network. I
want you to know today about how critical Federal financial aid
is for today's students.
When I was a little girl, I used to be upset that grandma
never wrote ``happy birthday'' in the cards she sent me. Every
year, the cards were always blank. As I grew older, my mom
explained to me that she was illiterate and simply did not know
to write ``happy birthday.'' My grandmother and my grandfather
were born and raised in Haiti where they weren't able to get an
education because their families couldn't afford it. My mother
was also born in Haiti and came to the United States in her
20s. She was able to earn a certificate as a nursing at our
local community college, and I am writing this statement as the
first person in my family to go to a 4-year university to earn
a degree.
This is an excerpt from personal statement in my
application to George Mason University: ``I am now a third-year
student and will be graduating in May of 2020. Growing up my
family has always stressed the importance of going to school.
They believed that it was the only way for my brother and I to
be successful and to be happy. I watched my mother work two
jobs and multiple 12-hour shifts day after day. This degree
isn't just for me. Students like me who are underrepresented
minorities, children of immigrants, low socioeconomic
background, and first generation are fighting for a degree that
will bring honor and hope to our families. We are reaching for
new heights with the knowledge that we must run with this
opportunity for those who can be for us and for those who will
come behind us.'' But access without support is simply not real
opportunity.
More need-based aid like Pell Grants and Federal work study
will help keep loan debt down. Roughly 1 million people default
on their Federal student loans every year. About half of those
students drop out of college, and almost 90 percent are low-
income, resulting in no college credential and an increased
likelihood that they will remain in a continuous cycle of
poverty. Students shouldn't have the burden of working full
time and being a full-time student just to survive the debt of
college. I am a full-time student who works part-time jobs, and
I want to know Congress has invested in me and students across
this country as I am attaining a bachelor's degree.
Like many of my peers, the biggest challenge I have faced
is figuring out how I will pay for college. I ask that you
increase Pell Grants and not just hold steady. Pell Grants need
to match the overall increase of tuition by covering much more
of the cost of attendance. The original version of Pell Grant
covered three-quarters of the total price of college. Today the
Pell Grant covers less than 30 percent of an in-State public 4-
year education.
I have an EFC of zero and I receive the maximum Pell Grant
available, yet still owe about $8,000 outside of my tuition.
The FAFSA says I should be paying nothing, yet I am forced to
take out loans to pay my remaining balance. That $8,000
includes housing, meals, textbooks, and transportation to my
internship in one semester. I have no emergency fund to cover
if my laptop crashes, or if my car breaks down, or if I need to
travel home for a funeral, or other family emergencies. Pell
needs to cover more than the cost of attendance. We need more
to just go to school. We need a place to live, food to eat,
books to read, and transportation to gain experience.
My second request is to improve the Work Study Program by
expanding it to serve more students. Approximately 700,000
students benefit from the Federal Work Study Program each year,
which is less than 10 percent of the 7,800,000 students who
receive Pell Grant. I was fortunate enough to participate in
the program my freshman year as an immigrate community's
research assistant, and it forced me to learn how to balance
working while being in school. The job was also on campus, so I
didn't have to worry about transportation. It also gave me the
opportunity to establish a meaningful relationship with my
professor and to gain research experience, which paves the path
for me to participate in other opportunities.
Because students who participate in work study are more
likely to complete college, Congress should increase the
program's funding so more low-income students can benefit.
Again, my requests are to increase Pell Grants so that it
covers more than the cost of attendance and to improve the Work
Study Program by expanding it to serve more students. These
students are worth investing in. I am worth investing in. Thank
you.
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Ms. DeLauro. You are worth investing in indeed. You
probably know this, but some don't. I always talk about the
strength of the institution of the Congress is its potential.
Sometimes that is where its greatest strength is. Sometimes
this institution doesn't do what you want it to do every day,
but it has the opportunity to do that. And one of the things,
along with Medicare, Social Security, civil rights, the GI
Bill, is the ability of the sons and daughters of middle-income
families, low-income families, immigrant families to be able to
get their kids to school.
And the Pell Grant is named after Senator Claiborne Pell.
Senator Pell was born into wealth, but he believed very
strongly that the sons and daughters of working families
deserve the opportunity to get an education. And, therefore, we
should continue to strengthen the Pell Program. We should
increase the size of the grant. We should make it possible for
people who are seeking to get a certificate and other ways in
which to be able to gain the experience that they need.
The Supplemental Employment Opportunity Grant, the funding
for that is eliminated, and there again that will not be
eliminated. And there is a great belief that the Federal Work
Study Program has real merit for youngsters. You said something
that is so important. You really are the American Dream for
your family, but you not only get the degree for yourself. You
get it for your family because that is their dream, and what an
eloquent spokeswoman. Thank you.
Mr. Celestin. Thank you.
Ms. DeLauro. Congresswoman Frankel.
Ms. Lee. Thank you very much. You certainly are worth
investing in as are all of our young people. I, Madam Chair,
was a work study student, and so I know the benefits of
increasing funding for Work Study Programs. It is so important.
Thank you.
Ms. DeLauro. I am now going to ask Dr. Herman Felton to be
with us, and I am also going to yield to my colleague from
California, Congresswoman Lee, for the introduction.
Ms. Lee. Well, thank you very much, Madam Chair. First, let
me say how happy I am to see you, Dr. Felton, here on Capitol
Hill. Dr. Felton has been serving as the 17th president and CEO
of Wiley College. Madam Chair, let me just remind you. You may
know and this committee may know Wiley College from, if you
don't know the school, from the film, The Great Debaters, where
Denzel Washington was professor. Was it Melvin Tolson? And
really showed how the first black debate team moved forward to
challenge the Harvard debate team. The students at Wiley are
phenomenal students, and so it is really good to see you here.
Mr. Felton. Thank you.
Ms. Lee. You have achieved such significant
accomplishments, including, and I just want to lay out a few of
them, spearheading a campaign with college alumni and
supporters that has launched the work to actually renovate and
modernize the Thomas W. Cole Library, and also partnering with
the Marshall Economic Development Corporation to receive the
$100,000 grant to renovate the radio station, KBWC. President
Felton has also created a student health council and wellness
union for the college that is really staffed very well by a
full-time licensed practitioner.
Dr. Felton earned his bachelor's degree in political
science from Edward Waters College in Jacksonville, Florida.
Also he earned his J.D. degree from the Levin College of Law at
the University of Florida, and completed graduate work at
Jackson State University where he earned a doctor of philosophy
in educational administration and supervision. I have had the
privilege to visit Wiley Collee, and I can testify to the
enormously wonderful and magnificent education that students
are receiving at Wiley College, and thanks to your tremendous
leadership for leading that school into the 21st century. So
thank you for being here.
Ms. DeLauro. Doctor, you are recognized for 5 minutes.
----------
Tuesday, April 9, 2019.
WILEY COLLEGE
WITNESS
HERMAN FELTON, WILEY COLLEGE
Mr. Felton. Good afternoon, Chair DeLauro, Representative
Frankel, and a special greeting to Representative Lee who
visited our institution just a year ago.
Education is the surest vehicle to upward mobility. My name
is Herman Felton. I am the 17th president and CEO of Wiley
College in Marshall, Texas, home to the great debaters, great
scholars, and great activists. We have a 1,100 students, mostly
African-American. Seventy-four percent of them are first-
generation college students like myself. Ninety-eight percent
of them are Pell eligible or utilize some form of Federal aid,
including Federal loans, to finance their education.
We are proud of this populace we serve and the resilient
nature of our students, mostly African-Americans, who find an
HBCU education a necessity. We offer a nurturing campus
environment and our graduates can fulfill our motto to go forth
inspired.
There are four funding priorities that I would like to talk
about. Currently, our funding for HBCUs is approximately
$282,000,000, and we are seeking $375,000,000 in Fiscal Year
2020 for the Department of Education's Strengthening HBCUs
discretionary program. This allows for each institution to fund
or to spend funds the right way for each of them. All 100 of
our HBCUs have to compete for only $282,000,000, and we are
proposing that this funding is increased to $375,000,000.
No other group of institutions produces the high percentage
of diverse members of the workforce at the same rate as HBCUs.
There are approximately 4,400 institutions, and HBCUs represent
just 2 percent, yet we produce 20 percent of all African-
American who obtain a Ph.D. Funding should reflect the products
we produce, especially considering the students often come from
underserved backgrounds and become strong professionals, as
noted in a 2015 poll conducted by the Gallup Poll, or study
conducted by the Gallup Poll.
The mandatory Strengthening HBCUs Program should be
reauthorized this year. Mandatory portions, nearly $80,000,000
annually, focus on STEM programs. The undergraduate education
we offer at our HBCUs, like Xavier University, allow our
students or prepare our students to gain entrance by their own
merits at staggering rates into schools that produce
scientists, engineers, and doctors. The second is to fund the
HBCU Capital Finance Program, including its deferment
authority, at a total of at least $40,600,000. This program
allows HBCUs to build new buildings or refinance existing debt.
Wiley participates fortunately.
The 2008 economic downturn and the 2010 Parent Plus Loan
debacle disproportionately impacted our students and caused
near-catastrophic enrollment decreases. In 2018, this Congress
addressed those issues by implementing a new deferment
authority, and we are grateful for that for qualifying HBCUs. I
am asking the Congress to fund the deferment at no less than
$20,000,000, which would make the total amount of funding for
overall programs at $40,600,000.
To double the Pell Grant and strengthen the Education
Second Chance Program. The Second Chance Pell Program will soon
have 101 graduates from this pilot program. There are many
administrative burdens which fall on the institutions as we
attempt to implement this program to help educate many of our
incarcerated, and we are asking for administrative costs that
are covered for this program. And finally, we are asking to
strengthen the Pipeline for Training Program at the Department
of Health and Human Services. We seek that this committee
exercises oversight over NIH and for all to reimagine the role
HBCUs play in producing minority doctors and researchers.
In closing, HBCUs provide a national need. We produce over
and over and over bright, capable graduates that often come
from underserved backgrounds. The United Negro College Fund did
a study on the economic impact of HBCUs collectively, and that
impact is nearly $15,000,000,000 a year. And finally, I would
like to say that HBCUs do what no other institutions do, and I
hope that this panel rewards us for it. We graduate Rhodes
Scholars, Fulbright Scholars, and even late bloomers, like
myself, and all those in between. And our institutions are
accessible to all and consistent with our founding missions.
Thank you for having me here.
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Ms. DeLauro. Thank you very, very much, and thank you for
your work at Wiley College. I haven't visited like my colleague
has, but the film, it just makes your heart sing when you think
of what was accomplished there and the great talent that was
allowed to spring forth in our country. You talk about the
HBCUs who play a very, very unique role in our society and our
culture and in educational firmament. So I appreciate what you
have said.
We have talked about Pell. This is a committee that does
under consideration the National Institutes of Health and very
focused on that, and there is bipartisan support in those
efforts. And we will be sure that center of our discussion and
debate will be making sure that we strengthen the HBCUs. And
thank you for your support and your service and what you are
doing.
When you talk about first-generation students, there are so
many of us in this room who are first-generation, and as I said
to our previous panelist, that it is the American Dream.
Mr. Felton. Yes, ma'am.
Ms. DeLauro. And you allow that to flourish and to thrive,
so thank you very much.
Mr. Felton. Thank you for your words.
Ms. DeLauro. I will ask my ranking member who joined us.
This is a crazy time here. There are all kinds of committee
hearings, so welcome to Congressman Cole from Oklahoma.
Mr. Cole. I won't take up much time, Madam Chair. I just
want to apologize to you. I am sorry I wasn't here. I was both
on the floor and had another subcommittee that I had to make,
and I want to particularly thank you, Dr. Feldman. I agree very
much with what our chair had to say. This emphasis on first-
generation students and obviously the role HBCs have played
have been extraordinary for our country for a long, long, long
time, obviously generations literally. So I associate myself
with my friend's remarks, and I look forward to working
together as we try to provide more opportunities in this area.
Mr. Felton. Thank you.
Mr. Cole. Thank you.
Ms. DeLauro. Congresswoman Lee.
Ms. Lee. Thank you, Dr. Feldman. A couple of things. First,
HBCUs, I believe, I have been severely underfunded
historically, and so $375,000,000, I hope we can get to because
it just makes sense moving forward.
Mr. Felton. Yes, ma'am.
Ms. Lee. Also just as an FYI, there are no HBCUs west of
the Mississippi. However, last year I read a report where the
State that sends the most amount of students to HBCUs is my
State of California.
Mr. Felton. Yes.
Ms. Lee. And so I just want to thank you for educating our
young African-American students from California----
Mr. Felton. We are happy to have them.
Ms. Lee. [continuing]. Because unfortunately we have issues
in California----
Mr. Felton. Yes, ma'am.
Ms. Lee [continuing]. That still haven't been addressed for
African-American students. So thank you.
Mr. Felton. Yes, ma'am. Thank you.
Ms. DeLauro. Congresswoman Frankel.
Ms. Frankel. Thank you very much.
Mr. Felton. Thank you all for your service to our Nation.
Ms. DeLauro. Please let me invite Kathy Bates, who is the
national spokesperson for the Lymphatic Education and Research
Network, to testify. Let me also give a shout out to Kelly, who
is----
Ms. Bates. I am sorry. I am hard of hearing.
Ms. DeLauro. Okay. I will speak loud then. Okay. There we
go. But I just have to say this. Kathy Bates is a household
name. We all know Kathy Bates, just really an undeniable force
of stage, screen, and television, Academy Awards, Golden Globe,
et cetera, but here today as the spokesperson for the Lymphatic
Education and Research Network. She will tell her story and is
really a remarkable spokesperson for this area. And both the
ranking member and myself, we were very touched by our visits
from you and from Kelly, who was right there--thank you--who is
a veteran and who has served this Nation with three deployments
to Iraq. Three? Do I have that right? Two and a half?
Ms. Bell. Three, yeah.
Ms. DeLauro. Okay. All right. Great. But thank you, and,
Ms. Bates, you are recognized for 5 minutes.
----------
Tuesday, April 9, 2019.
LYMPHATIC EDUCATION AND RESEARCH NETWORK (LE&RN)
WITNESS
KATHY BATES, LYMPHATIC EDUCATION & RESEARCH NETWORK (LE&RN)
Ms. Bates. Chairman DeLauro, Ranking Member Cole, and
distinguished members of the subcommittee, thank you for the
opportunity to appear before you today as you consider Fiscal
Year 2020 appropriations. I have lymphedema, and I serve as the
national spokesperson for LE&RN, the Lymphatic Education and
Research Network, an internationally-recognized nonprofit
founded in 1998 to fight lymphatic diseases. I am here to shed
light on these severely-misunderstood diseases and ask for your
help with some of the issues that our community faces,
especially the need for increased medical research and improved
professional and public awareness.
I am an ovarian cancer survivor. Seven years ago, I was
diagnosed with breast cancer and I had a double mastectomy. And
my surgeons felt it necessary to remove 19 lymph nodes from my
left armpit and three from my right. I am profoundly grateful
to the doctors for curing me of cancer, but the cost of that
cure means that I will live with an uncurable disease for the
rest of my life, lymphedema.
Within a week of surgery, I experienced symptoms: chronic
swelling in my arms, pain, and loss of mobility. I have been
hospitalized with a potentially fatal infection, and I require
time-consuming daily care regimens, like the compression
garments that I am wearing. And for most of us, these garments
are the only treatment available, and they can be prohibitively
expensive. We are working to expand access through the
Lymphedema Treatment Act, and we are hopeful that it will be
passed this Congress. But it is clear that our community
desperately needs more treatment options.
When I was diagnosed, I was appalled to learn that over
10,000,000 Americans suffer from these diseases. That is more
people than those living with MS, muscular dystrophy, ALS,
Parkinson's, and AIDS combined. The World Health Organization
puts global incidence at 250,000,000. Many develop lymphedema
after treatment for cancer, including one-third of breast
cancer survivors and thousands with ovarian cancer. For others,
it is congenital. Our veterans get the disease from trauma,
infections, and burn pit exposure.
Today there is no cure in sight, there is no approved drug
therapy, and there are only three studies worldwide seeking new
treatments. This disease is so misunderstood and misdiagnosed
that many of us suffer silently for years without the benefit
of knowing what afflicts us while the disease progresses. Kelly
Bell and Lindsey Bennett are with me today who are members of
our community, and it is their stories and their courage that
keep me in this fight. We thank Congress and especially this
subcommittee for continuing to support the NIH.
In Fiscal Year 2020, please continue to provide sustainable
growth by including at least a $2,500,000,000 funding increase
to bring NIH's budget up to $41,600,000,000. We also urge this
subcommittee to work to expand the NIH's lymphatic disease
portfolio by funding meritorious grants on critical topics and
encouraging collaboration among relative institutes and
centers. Please also work to establish a national commission on
lymphatic disease research to thoroughly examine that portfolio
and make recommendations on how best to advance this emerging
scientific field.
The study of the lymphatic system is poised to bring
miracles for many diseases, like heart disease, cancer
metastasis, diabetes, and Alzheimer's. Lymphatic research is
exciting, but it won't mean much unless we also improve
provider education and public awareness. Mention of the
lymphatic system is virtually nonexistent in the curricula of
U.S. medical schools. Physicians receive only 15 to 30 minutes
on the entire lymphatic system throughout their medical
training. This leaves them seriously ill prepared to diagnosis
the disease. LE&RN asks Congress to improve this by providing
the CDC with $7,800,000,000 through Fiscal Year 2020. We also
ask you to establish merit-based programmatic activity on
lymphatic disease education and awareness through a competitive
grant program at CDC's National Center on Chronic Disease
Prevention and Health Promotion.
I want to close today by touching on the story of 10-year-
old Emma Detlefsen. Emma was born with lymphedema in both legs
and has been hospitalized 9 times in her life with potentially
fatal infections. Through all this, she continues to be one of
our most passionate advocates. In a keynote speech at our 5K
walk in New York, she said something that inspired us all: ``If
I can do something hard for me, like walk back and forth across
the Brooklyn Bridge, maybe a smart scientist can do something
hard for them and find a cure for this in my lifetime.'' I ask
this committee to help make Emma's dream a reality.
Thank you for your time.
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Ms. DeLauro. Thank you. Thank you for your powerful
testimony today, and also I, again, welcome Kelly and Lindsey,
you as well. Thank you. I think that both Congressman Cole and
myself were really touched to the bone when you visited with
us. And the revelation that there isn't a cure, that there
isn't treatment, or there aren't any avenues of research at the
moment that are trying to uncover, you know, what can be done.
I don't know. I am not a scientist, you know.
But the fact that we are not there in the field and taking
a look at, as you pointed out, with the numbers of people, the
millions and millions of people all over the world who are
suffering, and it is like we can't do anything about it. Well,
you know, I think it is the kind of advocacy, or that we are
not training our physicians to know anything about it as well.
You should know that, and Congressman Cole will speak for
himself, but we both addressed this. We had here last week the
members from the Institutes, including Francis Collins, the
head of the NIH, and also the head of the Institute for Blood,
Lung, and actually I am going to an event there tonight as
well. I don't know if you are, Congressman Cole. But anyway, we
brought that up, and I know that Dr. Collins wrote it down and
came up afterwards to talk about that it is that we might be
able to do with regard to lymphatics and to examine that.
We will all tell you that you have a lot of very well-
meaning people in this institution, but what moves this
institution is the external pressure. You all are the external
pressure, and you put a human face on what is, when you survive
cancer, and we are sisters in that regard of surviving ovarian
cancer. But you survive breast cancer and then, you know, to be
faced with what is now an incurable disease. We shall do
something about it, and we shall make sure that Emma's dream
comes true as well. Thank you.
Ms. Bates. Thank you.
Ms. DeLauro. Congressman.
Mr. Cole. Thank you very much. I want to join you, Madam
Chair, in thanking our friend for her very powerful testimony.
Kelly as well, visits. And I know sometimes you wonder whether
or not these things make a difference. They do. We have seen it
in the last 4 years at the NIH. I am quite sure we will
probably continue to work together in that regard.
And it is a lot easier to direct resources towards some of
these areas that have been understudied and people that have
been underserved when we are increasing the budget at NIH, and
that is what this committee has tried to do. We had a very
powerful hearing last year on Down's syndrome, and it has
resulted in some significant changes at the NIH and a
reexamination of what we can do there. And it is certainly my
hope that something like that will happen here as well.
So I want to thank you for taking what is a personal
tragedy for you--Kelly, you obviously have done the same thing
and others--and putting it to a really public good where you
really help people because you have a powerful voice, powerful
testimony, and it makes a difference. And my friend, the chair,
is absolutely right. We do respond to, you know, I don't know
if I would even call it pressure. I think it is more of just
raising the awareness level.
Ms. Bates. Yes.
Mr. Cole. Because most of the time, people want to do the
right thing. That is why, you know, this committee has done
more than the last presidents have asked it to do in this area
because we know it genuinely is important in a, you know, a
very polarized and sometimes partisan period of time. This has
been an area where have come together, worked together, done
good work, and I think you are going to help us continue down
that path. So thank you for taking of your time and sharing
your story because it will make a difference to what we do as a
committee and what our colleagues do.
And fortunately we have had good partners in the United
States Senate on both sides of that aisle that will work
through this. We can't do it all by ourselves, so we appreciate
the testimony and look forward to working with you and trying
to make meaningful progress.
Ms. Bates. Thank you. Thank you so much. It is not me. It
is for everyone. Thank you so much.
Mr. Cole. Thank you.
Ms. DeLauro. Congresswoman Lee.
Ms. Lee. Thank you for being here, and we know you are here
for everyone, but your voice and your courage is making a
difference. And one of the reasons I wanted to join this
subcommittee was because of the type of research and the type
of work we can do here to make life better, to enhance the
quality of life for everyone. My sister has multiple sclerosis,
and so I know a lot about MS and all of the diseases that we
still haven't been able to figure out.
Ms. Bates. Yes.
Ms. Lee. But this subcommittee is committed, and so thank
you. You are such an important voice and the wind beneath our
wings, I think, so that we can make sure that we do the right
thing.
Ms. Bates. Thank you so much.
Ms. Lee. Good to see.
Ms. Bates. We really appreciate your attention.
Ms. DeLauro. And we will continue to watch the movies.
[Laughter.]
Ms. Bates. Thank you.
Ms. DeLauro. Nathaniel Smith. We are going out of sequence
here for a moment because of trains, planes, and automobiles.
Dr. Smith, you are recognized for 5 minutes.
----------
Tuesday, April 9, 2019.
ARKANSAS DEPARTMENT OF HEALTH AND ASSOCIATION OF STATE AND TERRITORIAL
HEALTH OFFICIALS (ASTHO)
WITNESS
NATHANIEL SMITH, M.D., M.P.H., DIRECTOR AND STATE HEALTH OFFICER FOR
THE ARKANSAS DEPARTMENT OF HEALTH; AND PRESIDENT-ELECT, ASSOCIATION
OF STATE AND TERRITORIAL HEALTH OFFICIALS (ASTHO)
Dr. Smith. Thank you. Chair DeLauro, Ranking Member Cole,
and members of the subcommittee, thank you. Significant
importance to the lives of American people, sustained and
adequate resources for our governmental public health system.
The mission of our Nation's governmental health agencies is
to protect and improve the health of the population everywhere
every day. The work of public health is often invisible, and
sometimes it is only in a crisis when the value and importance
of sustained investment in public health becomes apparent.
Those crises unfortunately happen all too often. The current
measles and hepatitis A outbreaks, the obesity and opioid
epidemics, and many others, highlight the important work of
disease prevention and health promotion at the core of public
health's mission.
When I was in private practice as an infectious disease
physician, I was amazed at how much we spend treating diseases
that are 100 percent preventable, and even when successful in
treating patients, we seldom restore them to their original
state of health. That experience is part of what drew me to
public health where we approach health problems from an
upstream prevention perspective. Keeping healthy people healthy
is the best and smartest way to lower healthcare costs.
As a fiscal conservative, asking for more Federal dollars
is not easy for me to do. There are three reasons, though, why
I am confident in asking for more funding for the CDC. First, I
know CDC director, Robert Redfield, to be a good steward of
public funds. He is a man of great compassion, integrity, and
vision, and when I worked with him several years ago on his
PEPFAR-funded HIV Care Program in Kenya, he expected us to get
the most out of our Federal dollars and to absorb cuts when
they came, without compromising the mission. I know he is doing
the same at CDC.
Second, the CDC is known throughout the world for its
scientific excellence and evidence-based prevention strategies
that save lives, protect health, and ultimately reduce
downstream healthcare costs. Third, much of the funding to CDC
goes directly or indirectly to support State and local public
health.
Two years ago, Arkansas had the second-largest mumps
outbreak in the U.S. Last year we had an outbreak of a
bloodstream infection among cancer patients caused by an
organization that had never been isolated before. This year we
are dealing with an ongoing outbreak of hepatitis A. Without
the funding and technical we received from the CDC, we could
not manage these health threats successfully.
The Association of State and Territorial Health Officials
and over 80 other national organizations urge Congress to
increase funding for CDC 22 percent by Fiscal Year 2022, which
translates to a $500,000,000 increase in Fiscal Year 2020,
bringing the topline funding levels to $7,800,000,000. Our goal
is to reach $8,800,000,000 by Fiscal Year 2022. A $500,000,000
increase in funding per year will assessment governmental
public health to better prevent drug overdoses, save lives
through chronic disease prevention, enhance disaster
preparedness response and recovery, combat infectious diseases,
and prevent and remediate environmental health hazards.
As a former medical missionary to Kenya, I experienced
firsthand the devastating effects of the HIV epidemic, but I
also saw the incredible impact PEPFAR had on lowering the
burden of HIV disease in Africa. I am extremely encouraged by
the Administration's proposal to establish a similar program
here in the U.S. to end the epidemic of HIV by 2030, and hope
you will appropriate additional resources to support his
important objective.
My colleagues and I are grateful to you and members of
Congress for the significant increase in funding to address the
opioid epidemic in Fiscal Year 2018, and for the $50,000,000
downpayment to the Infectious Disease Rapid Response Fund in
2019. We hope you will build on the success of previous
bipartisan agreements to increase resources for our Nation's
public health system in Fiscal Year 2020, including not only
CDC, but also HRSA, ASPRE, and other HHS agencies.
Finally, the promise to protect and promote the health of
the American people will not be realized unless Congress
develops a bipartisan budget deal to address sequestration. We
are grateful for the previous budget agreements and urge you to
work collaboratively to address sequestration immediately.
Thank you for the opportunity to testify to you today.
Please review my written testimony for specific funding level
requests.
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Ms. DeLauro. Thank you very, very much, Dr. Smith, and I
think I can assure you that there is bipartisan support for the
NIH and for CDC, et cetera. And we realize that they are really
kind of the, along with the FDA, the crown jewels of our public
health system, and we thank you very, very much for your
testimony. Congressman.
Mr. Cole. Just very quickly, thank you for, again, your
testimony, but particularly focusing on the importance of CDC
for public health all across the country. I think a lot of our
colleagues don't realize how much of the public health system
for every State is funded by CDC. I know my own State of
Oklahoma, CDC is about 60 percent of public health funding, so
when we increase this line, we really do help everybody all
across the country.
And thank you, too, for pointing out the importance of the
Rapid Response Disease Fund. This committee did that last year,
and I hope we can continue to build on that because we know
this is coming. We can't tell you when or where, but we are
going to have these problems. So giving them the ability to
respond immediately and not waiting for a supplemental and then
Congress can catch as it figures out what needs to be done, I
think, is a really important innovation that this subcommittee
drove last time in negotiations. So your testimony is very
timely and very helpful. Thank you, Madam Chair.
Dr. Smith. Thank you.
Ms. DeLauro. Congresswoman Lee.
Ms. Lee. In the interest of time, thank you very much for
being here.
Dr. Smith. Thank you.
Ms. DeLauro. Again, let me ask Dr. Valerie Montgomery Rice
to join us. I think you have a train or plane to catch here, so
thank you very, very much. Delighted to see you today. Dr.
Rice, you are recognized for 5 minutes.
----------
Tuesday, April 9, 2019.
MOREHOUSE SCHOOL OF MEDICINE AND ASSOCIATION OF MINORITY HEALTH
PROFESSIONS SCHOOLS
WITNESS
VALERIE MONTGOMERY RICE, M.D., FACOG, PRESIDENT AND DEAN, MOREHOUSE
SCHOOL OF MEDICINE AND ASSOCIATION OF MINORITY HEALTH PROFESSIONS
SCHOOLS
Dr. Rice. Good afternoon. Madam Chairwoman DeLauro, Ranking
Member Cole, and members of the subcommittee, thank you very
much for this opportunity to present testimony to this
subcommittee. In the limited amount of time we have, I want to
share some key points with you, if I may.
First, I am here representing an extraordinary set of
health professions and training institutions known as AMHPS,
the Association of Minority Health Professions Schools, and
Morehouse School of Medicine where I serve as the president and
dean. Collectively, our minority-serving institutions have
historically trained half of the black physicians in the
country, half of the black dentists, and 75 percent of all of
the Nation's black pharmacists and veterinarians.
No other institutions have such an impressive legacy of
accomplishments that is consistent with the national goal of
improving the health status of all Americans. As such, we
continue to strive to be a leading producer of diverse health
professionals, committed to bolstering access to primary care,
eliminating health disparities in rural and urban communities,
and improving healthcare quality for all.
Second, let me thank you for your long-term investments
made by this subcommittee, of providing for health professions
training programs, public health and minority-focused research.
These investments of our institutional support is paying off.
Our institutions are stronger and less fragile than they were
25 years ago.
As a result, we are able to make a greater contribution and
effort to advance health equity. We are taking leadership roles
in our efforts to address the issues impacting maternal
mortality, opioid misuse, and other substance use, mental
health, and the social determinants of health. However, just
like our non-minority institutions, we, too, need ongoing
support to facilitate the important work we are doing.
Inherent in our collective mission to train students from
disadvantaged backgrounds and to improve the health and
wellbeing of vulnerable populations come financial challenges.
Our schools continue to not have the resources that greater,
larger institutions have, such as staggering endowments.
Therefore, we rely heavily on the annual funding this committee
provides in support of our mission of serving those most
vulnerable and underserved communities.
As we only have a few minutes, I want to make a special
appeal to you on two important programs administered by the
National Institute on Minority Health and Health Disparities
known as NIMHD, the research centers at minority institutions,
known as RCMI Program, and the Research Endowment Program.
Somehow during the last several years, the NIMHD has changed
both programs in such a way that has tremendously diminished
our ability to compete for either initiative.
First, the RCMI Program. RCMI was started by this very
subcommittee in 1986 by the Honorable Louis Stokes. I am
quoting from the Code of Federal Regulations: ``It responded to
expand the national capacity for research in the health
sciences by assisting predominantly minority institutions that
offer doctoral degrees in health professions and/or related
health sciences. Secondly, enhances significantly the capacity
for the conduct of biomedical and behavioral research at such
minority institutions by strengthening their research
environment. And to be eligible to participate in the RCMI
Program, an institution must have more than 50 percent
enrollment.''
These instructions seem very clear to us, but somehow the
focus of the RCMI Program now is so broad that we find
ourselves competing with non-minority institutions for program
funding that has been flat for years. Our concern is that
enhancing eligibility without significantly enhancing the
funding simply reduces the amount of resources available for
the institutions that the program was established to support.
Currently about 95 percent of NIH external support already goes
to non-minority institutions and non-minority researchers.
We have a similar challenge with the Research Endowment
Programs. In the last two years, an arbitrary limit of 10 years
of endowment support was placed on those participating
institutions, even though the law said that the programs and
schools should be eligible and it would continue until the
medium level of endowment for a health profession school in a
specific discipline. You can see that this is challenging us.
Madam Chairwoman, I am asking on behalf of our schools that
the subcommittee work with us and NIMHD to resolve these
challenges to programs that have helped us build capacity. With
them, we can continue to make a growing contribution. Without
them, we will continue to struggle. Thank you very much for
your attention and your leadership throughout the years.
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Ms. DeLauro. Thank you, very, very much. And I had the
honor of serving on this subcommittee many years ago with Lou
Stokes, no greater champion for all of the issues that you have
laid out here this afternoon. And I for one, and I think some
of the areas that you mentioned, the research centers at
minority institutions, take a hard and close look at what has
been happening there, as well as the Research Endowment
Program, and also the REACH Program----
Dr. Rice. Right.
Ms. DeLauro [continuing]. That is in your testimony to see
what has been happening in those areas, but I thank you for the
great work that you are doing, and when you started to list all
of the professions, the medical professions, and where you are
doing that training. It is more than critical in terms of
providing the professional capability to all of us here, and
particularly underserved areas, and especially when we are
dealing with so many health disparities, et cetera, that are
critical to that debate. Thank you.
Dr. Rice. Thank you very much. Thank you.
Mr. Cole. Just quickly I want to agree with my friend, the
chair, and thank you for the work that you do and the
institutions that you represent. I have got a large rural area,
so I understand very much the disparity and also large native
populations in my district. Same set of challenges. It is true
you probably don't have any better champion than the gentlelady
from California, who is out there and has done a lot to educate
this subcommittee across the board, certainly me personally, on
how important this is and how important these investments are.
So thank you for being here.
Dr. Rice. Thank you. Thank you. Thank you.
Ms. Lee. Thank you. I want to thank our chair and ranking
member for that, and also just say to you, Dr. Rice, it was
really wonderful. I had a chance to visit Morehouse School of
Medicine recently, and I can tell you, if you haven't seen the
school, try to get there. State-of-the-art equipment, state-of-
the-art students, wonderful, brilliant students, and it is just
the future. And so we need to do everything we can do to not
only support, but increase our support. So thank you.
Dr. Rice. I believe that we are making a great return on
the investment, and we look forward to continuing to work with
you all. Thank you very much for your service.
Ms. DeLauro. Thank you, Dr. Rice. Clare Coleman.
----------
Tuesday, April 9, 2019.
NATIONAL FAMILY PLANNING AND REPRODUCTIVE HEALTH ASSOCIATION
WITNESS
CLARE COLEMAN, NATIONAL FAMILY PLANNING AND REPRODUCTIVE HEALTH
ASSOCIATION
Ms. Coleman. Chairwoman DeLauro, Ranking Member Cole, Ms.
Lee, it is my pleasure to be here. I am Clare Coleman. I am the
president and CEO of the National Family Planning and
Reproductive Health Association. I am also former
appropriations associate staff of this committee. [Laughter.]
And for a number of years I sat in the row behind the
members in a committee led by John Porter of Illinois and David
Obey of Wisconsin. There are actually a number of people behind
me in this audience who were teachers, and I was lucky enough
to sit behind Ms. DeLauro for many years with Becky Salay, one
of your wonderful staffers.
So as I have been sitting here and listening to the
testimony of so many colleague organizations, I am struck again
by what I learned in that back row, which is all of these
programs are connected, and so many of the populations that we
are serving are the same populations. So when you think about
Job Corps, or 21st Century Learning Centers, or the budget for
the CDC, or GEAR UP and TRIO, you can also think about Title X,
Family Planning. And I am here to testify on behalf of a
$400,000,000 request for Title X.
I want to say something about the systems in your home
areas. Mr. Cole, you have the State of Oklahoma as your primary
Title X grantee, but there are also two community-based
organizations that work to serve the community, and in your
district and every county health department, there are Title X
health services available. Chairwoman DeLauro, in your home
State, Planned Parenthood Southern New England is the primary
grantee, but we also have Cornell Scott-Hill in New Haven, and
I am thinking about health centers like Fairhaven Community
Health Center. They are seeing an enormous number of patients
now in the city and doing really wonderful work.
And, of course, Ms. Lee, in your very big State and your
very interesting district, whether it is Oakland, or the City
of Berkeley, or a number of other communities like Emeryville,
there are health providers all throughout that area providing
great services. The City of Berkeley is also involved. So what
you see in the Title X Program is a really diverse and broad
set of providers, and they come together to provide excellence
in contraceptive care and sexual health services.
The program has been flat funded for 6 cycles now and
sitting at $286,000,000. We see about 4,000,000 people a year
with those resources. It is about 20 percent of the
demonstrated need. And one of the reasons why we and many of
our allies in the public health community came forward this
year with a very significant request was in part because there
has been no increased funding for Title X for so long. Before
the years we have had flat funding, we took $31,000,000 in
cuts, and really as a direct result of those cuts, we lost more
than 1,200,000 people from the program.
Title X primarily serves women, but 12 percent of the
population we see are male, and we also see transgender and
nonbinary clients, and so we have an enormous need to meet.
These are low-income, poor, and vulnerable people. They are
coming to us for contraception, sexual healthcare, STD testing
and treatment, basic infertility screening, and then connection
to a wide range of non-Title X services.
I think it is important to note that in Congresswoman
DeLauro's district, as well as in Mr. Cole's district, as well
as in Ms. Lee's district, there are number of federally-
qualified health centers now, primary care centers
participating in Title X. So as we continue to look for ways to
maximize people's access to care and to meet all of their
needs, Title X now is a program that is really well integrated
with other forms of care.
And I would be remiss, even though he has left the room,
not to mention Dr. Smith from Arkansas because the Arkansas
Department of Health is a member of NFPRHA. The Arkansas
Department of Health runs Title X services for the State, and
they have an outstanding leader in a guy named Mike Rydell who
trains the clinician workforce all throughout the State to make
sure they can offer the most modern forms of contraception.
This request may seem strange at a time when the
Administration is targeting Title X for the most substantial
rules change in the program's history. But we believe that the
need is clear. We believe that the law is clear. Title X was
created to equalize access to contraceptive care, especially
for poor and low-income people. Your income should not dictate
the quality of care or the breadth of care you receive. And
especially when it comes to such a sensitive, personal service
like family planning care, we believe that the access points
must be open all across the country.
We have also shown in our history that when Congress gives
us more resources, we see more clients. The last increases the
program got were in the early days of the great recession, and
in a 2-year period, Title 10 saw 170,000 new patients. Our
systems need the funds and we will see the patients.
Thank you for the opportunity to be here today.
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Ms. DeLauro. Thank you so much, Clare. It is wonderful to
see you. It is wonderful to see you there, you know. And, you
know, we all turn around to the back row to get information and
to make sure that the facts we are trying to talk about are the
right things to do. And if you don't know, the staff has as
great a commitment as any member does to what are the issues
that we take up here, so thank you for your great work and your
time here. And you worked with John Porter, who doubled the
amount of funding for the NIH on a bipartisan basis all those
years ago. But thank you for the great work that you are doing
now.
I will just say this. Look, I don't have to explain to you
the environment that we are in with regard to Title X, so that
your advocacy, I will use the term ``pressure'' on the
institution, as well awareness, but in this area it is about
pressure on the institution, will make an enormous difference.
And we thank you for what you do in terms of when you talk
about the Hill Health Center, when you talk about Fairhaven
Health Center, these are the places 23,000,000 every year get
their healthcare through, community health centers. It is often
their primary care.
Therefore, the kinds of services that you provide are
critical. We don't know what we would do without the services
of Title X and our ability to preserve a woman's personal
choices in her own life. So thank you very, very much for being
here, and we will take up your request.
Ms. Coleman. Thank you for all the ways you have been a
champion over many, many years, and to you, too, Congresswoman.
Ms. Lee. Yes, and thank you for being there.
Ms. Coleman. Thank you.
Ms. DeLauro. Donna Jones. Thank you, Donna, and we will
recognize you for 5 minutes.
----------
Tuesday, April 9, 2019.
SPINA BIFIDA ASSOCIATION (SBA)
WITNESS
DONNA JONES, SPINA BIFIDA ASSOCIATION (SBA)
Ms. Jones. Good afternoon, distinguished committee members.
Thank you for the opportunity to provide you with testimony of
my experience of what it is like to live as an adult with spina
bifida. My name is Donna Jones, and I am here to represent with
honor the Spina Bifida Association. We are requesting
$8,000,000 for the National Spina Bifida Program housed at the
National Center on Birth Defects and Disabilities at the
Centers for Disease Control and Prevention. As a former Capitol
Hill staffer, I understand just how important these committee
meetings are.
When I was born on the Island of Guam in 1976, the doctors
told my parents she will never walk, she will never talk, she
will be a vegetable. You have a normal older daughter. You need
to commit this one to an institution, put all of your focus on
the older daughter and just walk away from this one. This April
20th, I will be 43 years old. I love birthdays because with
every birthday, I continue to defy all the negative messages
that the doctors gave to my parents and the messages that
people continue to give me that are negative. I am part of the
first generation to survive to adulthood.
The big obstacle to this is that adult care doctors do not
have protocols in place to treat our myriad of issues. Most
have never even seen a patient with spina bifida. The majority
of the spina bifida population remain under the care of
multiple pediatric specialists. These doctors are the only ones
who have treated a large number of us. The reality is I may
never transition to adult care.
Under the auspices of the Centers for Disease Control and
Prevention, the National Center for Birth Defects and
Developmental Disabilities and the Spina Bifida Association
have developed the National Spina Bifida Patient Registry. The
registry stores data on patients from 24 spina bifida clinics
in the United States. Its primary purpose is to collect
information on health issues patients are experiencing, the
treatments we have received, and will ultimately be studied to
discern the effectiveness of the treatment. My medical
information is part of the registry.
My doctors at Duke University run a stellar program for
treating patients with spina bifida, and I hope my medical
history will help develop sound medical treatments so people
with spina bifida can live longer, healthier lives. Even though
I live in California, I travel to the Duke University Pediatric
Spina Bifida Clinic to receive care, and I am very lucky that I
can afford that care.
I don't live in fear of my spina bifida, but as I age, I do
worry about my urologic issues. The majority of people with
spina bifida are incontinent of both bowel and bladder, and I
do my best to keep my bladder and kidneys healthy. I drink a
lot of water, I catheterize myself on a regular basis, and I
make sure to have yearly checkups with my urologist. But I have
had more bladder infections than I can count, and some have
sent me to the hospital.
Now, the medicines I take to control my bladder spasms are
no longer working, and this leaves me vulnerable to bladder
infections. I have had multiple friends who have developed a
bladder infection that have spread to their shunts, and they
have died as a result. I have also had friends who died very
quickly from kidney failure. Typical of my fellow spina bifida
community members, kidney failure is my greatest fear.
Like 80 percent of people with myelomeningocele, which is
the most common and most severe type of spina bifida, I have a
pump called shunt installed in my head that drains spinal fluid
off of my brain. My shunt is my second heart. I cannot live
without it because it drains excess fluid off my brain, which
is called hydrocephalus. Hydrocephalus is incredibly dangerous.
It can lead to irreparable brain damage or death if not
treated, and unfortunately there is nothing that I can do to
keep my shunt functioning. If it does malfunction, I have to
have brain surgery, and basically I am at its mercy.
Brain surgery requires a long and very pain recovery, but I
count myself very lucky that I have only had 14 shunt revisions
throughout my life. I have friends younger than I who have
endured 50 shunt revisions. But as a result of many shunt
revisions, I have developed seizures caused by scarring on the
brain. I take very powerful antiseizure medicines to keep them
under control, and I am happy to say this medicine is working
very well.
I know I am running out of time. I read too slowly, but let
me just say this.
Ms. DeLauro. Go ahead. Take your time.
Ms. Jones. I know I have painted a very bleak picture. I
can see it in your faces, but I love my life. I am very proud
of who I am as a woman with spina bifida. I am very lucky to be
alive and to be an American. I love living in this great
Nation. But the reality of the situation is that I don't ever
want anyone to pity me, but I also look forward to a day when
there is a cure for spina bifida because as much as I love my
life, do I want another baby born who has 32 surgeries like I
have had or 60 surgeries like some of my friends have had? No,
I don't want that.
My dear friend and mentor, Tom Baroch, died last November
at the age of 58. I miss him more every day, but I take comfort
in knowing he didn't die of a spina bifida-related problem. He
died from a blood clot like so many other people who don't have
a spina bifida. Tom got to grow old with spina bifida. I know
most adults don't consider 58 as old, but by spina bifida
standards, I and Tom, we are old. My neurosurgeon jokingly
tells me every time I see him, ``Try to behave, Donna, because
you are old with spina bifida.'' And he is right, I am old, but
I want the opportunity to grow old enough to look in the mirror
and see wrinkles on my face and more gray hairs on my head than
I can count. This is a dream I never allowed myself to have
until I was in my 30s.
I respectfully ask you to increase funding for the National
Spina Bifida Patient Registry as well as additional funding for
a hydrocephalus protocol development. These funds will help
those who come after me live healthier lives and help us all
live long enough to see wrinkles on our faces. And I want to
thank you personally for wonderful words that you have said to
each and every one of us, for your commitment our issues, and
your commitment to the American people and our healthcare
issues. As an American and a former Hill staffer, that means so
much me. Thank you and God bless you.
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Ms. DeLauro. Well, thank you so much. Thank you for shining
a light on an area that we have not--I will speak personally--
that we have not heard very much about and the work that may be
being done or not being done in this area. One of the things
that we are going to do with the subcommittee to bring up the
remainder of all the institutes who deal with other chronic
illnesses besides cancer and besides diabetes and AIDS, et
cetera. But to take a look across the board at what else, and
what are the areas in which we are, I will say this this way,
falling short in terms of being able to provide dollars for
research and the kinds of requests that you are making.
And it is powerful testimony, and you have no idea. That
look on our faces is not one of pity, but one of inspiration,
inspiration for what you have gone through. Others would walk
off the field, adios, I am not there, you know. But you are
there, and so much of what you say here today gives us the
impetus to fight on your behalf as well as for others and not
see another child born or another child who may be born have
the kinds of opportunities that may not be here today. So for
you, thank you, and God bless you. Thank you. Congresswoman
Lee?
Ms. Lee. Let me first say not only are you an eloquent
spokesperson, but you are a powerful educator. And I just want
to say I associate myself with our chair's remarks, but I
listened very closely to what you said. And just know being
such a powerful educator as you are, this committee has learned
a lot today because of you, and we will move forward in looking
at what we can do act upon your recommendations. So just thank
you very much for being here, and happy birthday to you.
Ms. Jones. Thank you.
Ms. DeLauro. Representative Lee.
Ms. Lee. Thank you very much. I want to thank you, Madam
Chair, for bringing up and asking Mr. Milan to speak out of
order. I have to leave for a 5:00 meeting, and thank you also
for inviting him to be here as a witness. I am very pleased to
introduce Mr. Milan. He is the president and CEO of AIDS
United, and I have known him for many years. AIDS United is a
national organization that over the last 30 years has focused
on ending the HIV epidemic in the United States through
grantmaking, policy and advocacy, and capacity building.
As a person living with HIV for over 30 years and
recognized as a real leader in the HIV community, Mr. Milan
currently serves as the chair emeritus of the Black AIDS
Institute board of directors and is on the scientific advisory
board for PEPFAR. He also served a 5-year appointment as co-
chair of CDC and HRSA's Advisory Committee on HIV and STD
Prevention, Treatment, and Care, and was designated as a
Fulbright senior specialist in global HIV and AIDS.
So thank you again for being here. Good to see you. And
thank you again, Madam Chair.
----------
Tuesday, April 9, 2019.
AIDS UNITED
WITNESS
JESSE MILAN, JR., AIDS UNITED
Mr. Milan. Thank you. Thank you, Madam Chair and members of
the committee, and to our superhero, Madam Congresswoman
Barbara Lee. I was 26 when I contracted the HIV virus, and
today those digits in my age are reversed. That is why I am
here because Federal investment in HIV prevention, treatment,
care, and research bring hope to millions of people living with
HIV and vulnerable to HIV.
In his State of Union address, President Trump challenged
Congress and the Nation to end the domestic HIV epidemic by
2030. We are thankful to Secretary of Health and Human
Services, Alex Azar, for championing that audacious and
bipartisan goal to the President, and also to Assistant
Secretary Gerard, CDC Redfield, to Director Tony Fauci of NIAID
at NIH, to Acting Director Waukegan at the National Indian
Health Service for their subsequent leadership in overseeing
this Administration's rollout of that plan, particularly
through HHS' Fiscal Year 2020 budget request that calls for
$291,000,000 increased funding for domestic HIV prevention,
care, and treatment. This is indeed an exciting time.
AIDS United has over 250 grantees in 40 States and
territories, and our public policy council consists of 50 of
the leading HIV/AIDS organizations in the country. After years
of flat funding, we appreciate the Administration's request for
increases to the Ryan White Program, to prevention at the CDC
and HRSA's community health centers, and we urge our champions
in Congress, especially Barbara Lee and others who we hope will
follow her, to build upon these proposed increases. But we also
urge you to align funding with the overall goal of the
Administration's plan to end the HIV epidemic by also
increasing AIDS research at NIH and to maintain our safety net
programs that are so critical to our public health.
We can make history. For the first time since the first HIV
cases were diagnosed 38 years ago, we can end the epidemic in
the United States. Scientific advances and groundbreaking HIV
research have shown us that it is not only possible for people
with HIV to live a long and healthy life, but that people on
antiviral medication who achieve an undetectable viral load
cannot transmit the virus to others. They cannot, period, end
of discussion. This knowledge alone, however, will not effect
the change that we need.
Over 1,000,000 Americans are currently living with HIV,
myself included, and annual HIV transmissions and new diagnoses
continue to hover around 40,000 in the United States. It is
only through significant and increased Federal investment in
the following programs will we actually end this epidemic in
the U.S. First is the Ryan White Program which serves almost
550,000 low-income, uninsured or underinsured individuals
living with HIV.
Viral suppression and prevention benefits thereof are only
possible if a person actually enters treatment and care and
stays there. Over 85 percent of Ryan White clients have
achieved viral suppression compared to about 49 percent
nationally. This is due the high-quality, patient-centered,
comprehensive care that the Ryan White Program provides. Ryan
White also serves populations that are most disproportionately
impacted by HIV, including racial and ethnic minorities, who
make up three-quarters of the program's clients. To improve
care outcomes and advance our goal for ending the epidemic,
sustained funding for all parts of the Ryan White Program is
essential.
We have also made incredible progress in the fight against
HIV and other sexually-transmitted diseases over the last 30
years thanks in large part to the crucial efforts of the CDC.
Those expanded testing efforts resulted in a number of people
who now know their HIV status, and it has increased
dramatically, and hundreds of thousands of new infections have
been averted that have actually saved our Nation billions of
dollars in treatment costs. This process confirms that HIV and
STD prevention works, but plenty of work remains. As many as
only 15 percent of all people living with HIV are aware of
their status, and STD rates are at the highest they have ever
been.
AIDS United is encouraged by the request for new CDC
funding to prioritize gay and bisexual men and transgender
people, including payment mechanism for preexposure
prophylaxis, or PrEP--that is also known as the HIV prevention
pill--as well as efforts to reengage people living with HIV
into care. We must also do more to combat disparities. While we
have made progress increasing transmission among women overall,
for example, women of color remain disproportionately affected.
Black women accounted for 61 percent of all new HIV cases among
women in 2016, and the diagnosis rate among Latinas is 3 times
that of white women.
We must also maintain America's leadership for HIV research
at the National Institutes of Health. Support from NIH was
essential for proving the effectiveness of PrEP, and made it
possible to learn the effectiveness of treatment as prevention,
and has gotten us closer than ever before to identifying an
effective HIV vaccine.
We appreciate this committee's bipartisan support for the
NIH over the course of the epidemic, and urge you to expand
resources for HIV research so that more effective treatments
and a cure can ultimately be found. AIDS United also strongly
urges this committee to remove all restrictions on Federal fund
for syringe service programs, particularly in the 220 counties
identified by the CDC as experiencing or at risk for an HIV and
hepatitis outbreak. Approximately one-third of the people
living with HIV in this country are co-infected with HIV and
hepatitis. We need to do more.
At present, only 93 percent of those 223 counties have
available syringe service programs. Over the past 30 years we
have learned that syringe services work, and they provide not
only access to care, but access to substance abuse treatment
and to health education. Therefore, AIDS United urges this
committee to adequately fund the CDC's Division of HIV
Prevention and Surveillance at $822,700,000, that you support
opioid-related infectious disease response with an
appropriation of $58,000,000, and increase funding for the
CDC's Division of Viral Hepatitis to $134,000,000, and the
CDC's STD Division to $227,000,000, and a new $225,000,000
funds at the Indian Health Service. We urge $2,535,000,000 for
the Ryan White Program, including $70,000,000 of new funds
proposed by the Administration, and a total of $3,450,000,000
in Fiscal Year 2020 for research at then NIH.
Thank you very, very much for your attention and for your
continued championship for people living with HIV.
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Ms. DeLauro. Thank you very, very much, and thank you for
your testimony and for your commitment to the issue. We have
made great strides with HIV/AIDS. There is still a ways to go.
You talked about PrEP, and we know that PrEP is really almost
not available in the South and parts of the country where we
need to focus our attention. We are also aware of what the
HHS's initiative is and supportive of that, but we are not
supportive--I will be very frank with you--of the cuts with
regard to PEPFAR and a cut of $424,000,000 in NIH research.
And also further, I would add one more, and a
$1,000,000,000,000-plus cut in Medicaid. Medicaid is the route,
the way in which we treat patients both for opioids, I might
add, and for HIV. So all these things, as a prior panelist
said, are all connected. They are connected, and you can be
assured that we are trying to look at the entire picture of
wanting to eradicate the HIV/AIDS domestically, but also the
other considerations that are there. So thanks so much for your
testimony.
Mr. Milan. Thank you.
Ms. DeLauro. Congresswoman Lee.
Ms. Lee. Thank you very much. Again, I am going to
associate myself with the remarks by the chair and just say
that we cannot rob Peter to pay Paul if we are going to achieve
an AIDS-free generation. And so we have got to have the funding
for a comprehensive approach, and it is got to be part of this
new initiative where we look at this form a variety of accounts
and perspectives. So thank you again, Madam Chair, and thank
you for being here.
Mr. Milan. Thank you.
Ms. DeLauro. Marilyn Geller. Thank you. Welcome, and
recognized for 5 minutes.
Ms. Geller. Thank you.
----------
Tuesday, April 9, 2019.
CELIAC FOUNDATION
WITNESS
MARILYN GELLER, CEO, CELIAC DISEASE FOUNDATION
Ms. Geller. Chair DeLauro, Rankin Member Cole, and
distinguished members of the subcommittee, thank you for the
privilege to testify before you today. my name is Marilyn
Geller, and I am the CEO of the Celiac Disease Foundation, an
organization devoted to finding a cure for celiac disease. If I
could leave you with one message today, that is that celiac
disease is a serious disease that our government does not take
seriously enough.
Celiac disease is one of the world's most common genetic
autoimmune disorders. Approximately 40 percent of us carry the
genetic marker, and about 1 percent of us develop it. Yet this
is nearly double the number of people with Crohn's disease and
colitis combined, and nearly triple that of type 1 diabetes.
And regrettably, researchers are finding that the disease
prevalence is doubling approximately every 15 years, making it
a public health epidemic. It is estimated that only 20 percent
of the 3,000,000 Americans with celiac disease have been
correctly diagnosed. The other 2,400,000 continue to suffer and
have no idea why.
In celiac disease patients, gluten, a protein found in
wheat, barley, and rye, triggers an immune response, leading
the body to attack the small intestine. This intestinal damage
causes more than 200 debilitating symptoms. Moreover, gluten
ingestion for people with celiac disease causes permanent
immunological scarring, doubles the risk for heart disease, and
acts as a carcinogen, quadrupling the risk of small intestinal
cancers.
My son, Henry, is why I am sitting before you today. Henry
was ill from birth, and he was suffering for reasons that the
best specialists in Los Angeles didn't understand. He suffered
from unbearable pain, can't get out of fatigue, headaches,
stomachaches. There were medications. There were medical
procedures. And at our lowest point in middle school, he would
say to me, ``Mommy, my brain is telling me to kill myself
again, and I don't want to. Please help me.'' It was a 15-year
ordeal until a doctor finally ordered a test for celiac
disease, and from then on, it has been personal.
Strict adherence to a gluten-free diet is the only
available treatment. But as our celiac disease researchers
agree, there is no such thing as a gluten-free diet because of
the constant risk of cross-contact with gluten, and gluten is
in 80 percent of our food stuffs and in our medications.
Ranking Member Cole and Congressman Tim Ryan are working very
hard to combat this, and I thank Congressman Cole for his
leadership on this issue.
I traveled here today because we need celiac disease to be
recognized as an important threat to the health of our citizens
by the U.S. government, including, and especially, by the NIH,
the FDA, the CDC, and CMS. Celiac disease receives virtually no
investment from the private sector and little to no resources
from NIH, especially when compared to diseases with similar
impact.
This gap is something Leslie Williams, founder and CEO of
ImmunsanT, a leader in celiac disease research, knows all too
well. She states, ``Sadly, Marilyn's story is all too common.
Drug development is built on a foundation of basic science, and
without public funding of basic research, drug development is
severely hindered. Moreover, public funding is perceived as
indicative of unmet need and the seriousness of a disease.''
Without the attention that comes with public funding,
private funding can be scarce. We have lived this. The paucity
of funding for celiac research is shocking, especially when
comparing it to other conditions that are much less common,
arguably less severe, and have available treatments. Moreover,
celiac research and treatment has the potential to guide
understanding and improve therapies for other autoimmune
conditions. Public funding is needed to support celiac
research. Private funding will follow in a more substantial
way.
Let me reiterate the seriousness of this disease. The
lifetime burden of the gluten-free diet is considered by
patients to be second only to having end-stage renal disease,
and by caregivers, comparable to caring for somebody with
cancer. On average, our diagnosed patients report 23 days of
school or work missed annually, resulting in excess utilization
of our healthcare resources. And despite what you might see in
popular media, celiac disease is not a fad. It is not a
punchline. Americans are dying because are not paying enough
attention to this disease.
Thank you for your time today, and thank you for anything
that this distinguished subcommittee can do to assist us in the
fight against this serious disease.
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Ms. DeLauro. Thank so much. I think I will take your last
comment and say, you know, look, I have a colleague here who
has celiac disease, and I watch how carefully she eats and what
she can or what she can't do. But I think you said something,
and I will concur. I don't think it is taken as seriously. It
is, you know, okay, so you read to avoid things and you avoid
this, you avoid that, or so forth, but I think you have laid
out how serious it is, what it can lead to, and that it is not
on the radar screen.
So with that in mind, and I am glad to hear Congressman
Cole is on it, then we will talk further, and Congressman Ryan
is a very close and dear friend. We will have conversations
with him about it as well. But your spotlighting this and
highlighting what it means gives us, and I will speak
personally, me, an understanding of how serious this disease is
and how seriously we need to respond to it.
Ms. Geller. Deeply appreciate it.
Ms. DeLauro. Thank you very, very much, for Henry as well.
Thank you, my friend.
Ms. Geller. Thank you.
Ms. DeLauro. Thank you for being here. Rachel Conant. Thank
you, Rachel. We recognize you for 5 minutes.
----------
Tuesday, April 9, 2019.
ALZHEIMER'S ASSOCIATION AND ALZHEIMER'S IMPACT MOVEMENT
WITNESS
RACHEL CONANT, SENIOR DIRECTOR, ALZHEIMER'S ASSOCIATION AND ALZHEIMER'S
IMPACT MOVEMENT
Ms. Conant. Good afternoon, Chairwoman DeLauro, Ranking
Member Cole, and members of the subcommittee. Thank you for the
opportunity to testify today and for your leadership.
Recent increases in Alzheimer's and other dementia research
funding at the National Institutes of Health has accelerated
breakthrough science and moved us closer to the national goal
of preventing and effectively treating Alzheimer's by 2025.
However, we must address Alzheimer's not only as an aging
issue, but as an urgent and growing public health crisis as
well. For those who have advocated for increased Alzheimer's
research funding year after year, you have given them hope,
hope that one day we will realize our vision of a world without
Alzheimer's.
On behalf of our nationwide network of advocates, including
my own family, we are grateful to you for being strong,
effective champions for the NIH. Millions of Americans will
live profoundly better lives because of what this subcommittee
and Congress has already invested. We can never thank you
enough for that.
As many on this subcommittee know, Alzheimer's is a
progressive brain disease that causes a slow decline in memory,
thinking, and reasoning skills. Ultimately, Alzheimer's is
fatal. It continues to be the only one of the top 10 causes of
death in America without a way to cure, prevent, or even slow
its progression. We have yet to celebrate the first survivor of
this devastating disease.
There are approximately 5,800,000 Americans currently
living with the disease, and more than 16,000,000 unpaid
caregivers. Alzheimer's impacts every aspect of their lives.
Alzheimer's is also creating an enormous financial burden on
these families, our healthcare system, and the economy. This
year alone, America will spend an estimated $290,000,000,000
caring for those with Alzheimer's with Medicare and Medicaid
bearing two-thirds of that cost.
Unfortunately, we estimate that nearly 14,000,000 Americans
will be living with Alzheimer's by 2050, costing our Nation
over $1,100,000,000,000. Those numbers are staggering, and,
quite frankly, they are unacceptable. We at the Alzheimer's
Association and the Alzheimer's Impact Movement are fully
committed to this fight. We are grateful for the bipartisan
support this subcommittee has continued to provide, but we
can't stop now.
Congress has laid a strong foundation to guide us. The
enactment of the National Alzheimer's Project Act in 2010 led
to the annual national plan to address Alzheimer's disease,
which addressed the goal of preventing and effectively treating
Alzheimer's by 2025. A few years later, the Alzheimer's
Accountability Act led to the annual Alzheimer's bypass budget
at the NIH, which outlines the funding scientists need to
achieve that 2025 goals.
And Congress has listened by providing historic Alzheimer's
research funding increases at NIH. These increases have
accelerated the pace of research and unlocked new discoveries,
allowing advances into new biomarkers to detect the disease,
building better models to test promising therapeutics, and
strengthening the Alzheimer's research workforce. The
excitement of all this potential is, of course, tempered by
failed clinical trials, but we learn new things from every
clinical trial with positive or negative results. The lessons
from these trials will eventually lead to successful therapies.
We are optimistic and are committed to working toward the day
when we will celebrate the first survivor.
We urge Congress to fund the research targets outlined in
the bypass budget by supporting an additional $350,000,000 for
NIH Alzheimer's funding in Fiscal Year 2020. While researchers
pursue a treatment, we must also help the millions of families
currently affected by the disease. Investing in a nationwide
Alzheimer's public health response will create population-level
change, achieve a higher quality of life for those impacted,
and help bring down costs. We thank Congress for prioritizing
Alzheimer's as a public health crisis through the swift
enactment of the BOLD Infrastructure for Alzheimer's Act last
year. This strong bipartisan law authorizes $100,000,000 over 5
years for the CDC to build a robust Alzheimer's public health
infrastructure across the country.
We urge Congress to include the full $20,000,000 for the
first year of BOLD's implementation at CDC. This investment
will allow CDC to establish regional Alzheimer's and related
dementias public health centers of excellence and fund State,
local, and tribal public health departments across the country,
particularly in rural areas and other underserved populations.
This infrastructure will focus on important public health
actions, like increasing early detection and diagnosis of the
disease, reducing risk, and preventing avoidable
hospitalizations. BOLD will also increase data analysis and
reporting, which is critical to identifying gaps and
opportunities, tracking progress, and helping policymakers make
informed decisions when developing future policies.
We are in a moment full of possibilities thanks to each of
you, and beyond providing critical funding, you have offered
hope to millions of Americans. The Alzheimer's community is
tremendously grateful for your leadership, but we can't afford
to stop here. Please continue to lead. Lead us to a world
without Alzheimer's. Thank you.
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Ms. DeLauro. Thank you very much, and thank you for the
strength of your testimony. And I think you do know, as you
pointed out in your testimony, that there is real bipartisan
support for this effort, so I believe we will continue in that
effort as well. So thanks so much for being here.
Ms. Conant. Thank you so much.
Ms. DeLauro. Amanda Peel Crowley. You are recognized for 5
minutes.
----------
Tuesday, April 9, 2019.
MENDING MINDS FOUNDATION
WITNESS
AMANDA PEEL CROWLEY, FOUNDING BOARD MEMBER, MENDING MINDS FOUNDATION
Ms. Crowley. Madam Chairwoman, it is an honor to appear
before the committee today on behalf of the Mending Minds
Foundation. I am here on behalf of the thousands of children
across the country who have had their lives turned upside down
by childhood post-infectious neuroimmune disorders, CPIND. In
CPIND, following infection, it is believed that that the immune
system goes rogue and attacks the brain, causing a devastating
inflammatory process. Parents like me watch helplessly as our
children experience debilitating neurological and behavioral
changes.
All three of my children have been diagnosed with a form of
CPIND called PANDAS, which is a pediatric disorder associated
with strep infections. It is a life-changing illness. Children
experience escalating symptoms that appear mainly psychiatric
while their underlying infection remains untreated. And parents
witness such a significant change that their child is almost
unrecognizable. Action needs to be taken by NIH to support
research into the causes and treatments of these conditions.
That is why I am here today asking for your help.
I co-founded Mending Minds with parents, scientists, and
doctors to drive serious research to find better treatments to
help children with CPIND. Previously happy childhoods are
upended as children's behaviors, and even motor function,
completely change, suddenly leaving them with dramatic
debilitating anxiety, obsessive thinking, and compulsive
behaviors. Their handwriting declines until they can't hold a
pencil, and potty trained kids start having daily accidents.
Some children are unable to separate from parents or even leave
the house.
Children as young as 4 or 5 suddenly appear anorexic,
unable to eat due to irrational fears. In extreme cases, some
children have had to be placed on feeding tubes. Children
experience massive mood swings, fly into aggressive rages. Some
pull out every hair on their heads. Even 7- or 8-year-old
children can become suicidal with an obsessive feeling that
they have to die. Several children have ended their lives, and
many others have been hospitalized for psychiatric conditions.
Our family's journey is typical. After years of worsening
behaviors and symptoms with misdiagnoses along the way, we
finally arrived at the true cause of our children's illness: an
undiagnosed, untreated strep infection that set off symptoms
that appeared psychiatric in nature. Only recently defined,
CPINDs are poorly understood. PANDAS is believed to be a
variation of rheumatic fever, which can develop if strep
infections are not treated quickly or adequately, and the
infection-fighting immune system becomes misguided instead of
attacking normal cells in the body.
In 2010, the term ``PANS'' came to describe a broader group
of children with the same symptoms, but arising from infections
other than strep. Little is known about either PANDAS or PANS.
Research is desperately needed. Families like ours spend
thousands of dollars and travel far and wide for treatment.
Specialists are hard to find, and wait lists can be as long as
2 years. As underlying infections go untreated, symptoms
escalate and become harder to treat and add a tremendous burden
to caregivers, educational and healthcare systems.
Given the severity of symptoms associated with CPIND, you
may be wondering why are these conditions still relatively
unknown. They may not yet be widely known and new to you, but
this is an alert. You will be hearing more about them. While
the medical community is beginning to appreciate how prevalent
these illnesses are, what remains under researched is how these
symptoms are initiated by a common infection, in this case,
strep throat. But the evidence is piling up, including a recent
major study linking OCD to infection. Studies like this raise
big questions about the percentage of children diagnosed with
mental illness whose symptoms are actually the result of an
untreated, underlying infection. With over 30 percent of U.S.
adolescents now meeting the criteria for an anxiety disorder,
the need for more resources to understand these phenomenon is
clear.
I want my family's experience to help thousands of other
children who are suffering. With your support, more can be done
to help children across the United States regain their
childhoods. My 12-year-old son, Will, is with me today. He
wanted to come to Washington to see how Congress works. Let's
show Will how Congress can actually work and be a positive
force, working with us, working with NIH, working together to
move forward on research into these disorders.
Parents in the Mending Minds Foundation are doing all we
can to support our children. Won't you please join with us to
help solve this nationwide problem? Thank you.
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Ms. DeLauro. Thank you very, very much. Powerful testimony.
Will, welcome to you, my dear. Great to see you. Think about
it. It does. It works for most of the time. [Laughter.]
Sometimes it doesn't work, Will, but----
Mr. Cole. But we always work.
Ms. DeLauro. But we try. We work together. We work
together, but there is hope. I am going to say to you something
that I said to the young woman. She said she was old, but a
young woman with spina bifida. You have, for me, personally
shed light on an area with, quite frankly, no information, no
knowledge, and so this is eye opening in a way that, you know,
research to get some sense of where we are and what is it that
we might be able to do. But I think your advocacy and other
parents' advocacy with loud voices are really what is required
to put a focus on this effort.
Ms. Crowley. Thank you.
Ms. DeLauro. So I applaud you and for your courage, and,
Will, you, too, for your courage in being here today. It really
makes a difference----
Ms. Crowley. Thank you so much. We are so grateful.
Ms. DeLauro [continuing]. In what we do. So, please, know
the power of your testimony and of your being here today. Thank
you very much. Congressman Cole.
Mr. Cole. Just quickly, I am sorry I came in part way
through your testimony, although I certainly have it here, and
we will go through it. But it reminds me, Madam Chair, of two
of my favorite sayings, one by Lyndon Johnson, so don't tell my
fellow Republicans.
Ms. DeLauro. I will not. [Laughter.]
Mr. Cole. But he used to say, ``Doing the right thing isn't
hard. Knowing the right thing to do is.'' And it is testimony
like this that really does help us figure out what the right
thing to do is sometimes. So thank you for taking the time to
come.
Ms. Crowley. Thank you so much.
Mr. Cole. My second favorite saying is by Will Rogers, so
another Democrat, but, you know, in Oklahoma we claim him.
Ms. DeLauro. There is hope for you.
Mr. Cole. There is hope for me. [Laughter.]
Thank you very much, Madam Chair. But he used to say, ``We
are all ignorant, only about different things.'' And, you know,
you have helped this committee understand something that it
probably didn't know very much about. I certainly didn't know,
like the chair, something I am learning about, so thanks for
bringing it to our attention. And as our chair rightly said, it
really does make a difference. I have seen it happen here over
and over again, particularly inside this committee, which my
friend tends to call the people's committee because it focuses
on things that are important to people. And we really do try to
listen and take the resources that we have and put them to work
in ways that improve lives.
So thanks for helping us in that charge that we have. It is
very, very valuable that you came to testify. Are you pretty
proud of her, Will?
Will Crowley. Yep.
Ms. DeLauro. Yeah, you should be. She is proud of you.
[Laughter.]
Janet Hamilton. Janet. Janet, you are recognized for 5
minutes.
----------
Tuesday, April 9, 2019.
COUNCIL OF STATE AND TERRITORIAL EPIDEMIOLOGISTS (CSTE)
WITNESS
JANET HAMILTON, DIRECTOR OF SCIENCE AND POLICY, COUNCIL OF STATE AND
TERRITORIAL EPIDEMIOLOGISTS (CSTE)
Ms. Hamilton. Chair DeLauro, Ranking Member Cole, thank you
for the privilege of appearing before you today. I am Janet
Hamilton, the director of science and policy of the Council and
State and Territorial Epidemiologists, or CSTE, representing
applied public health epidemiologists nationwide. We
respectfully request that you appropriate $100,000,000 to CDC
this Fiscal Year for a cross-cutting, transformative initiative
that will save lives.
As part of a $1,000,000,000 commitment over the next
decade, this initial investment would help CDC and State and
local health departments move from sluggish, manual paper-based
data collection to seamless, automated, interoperable, and
secure data systems that yield critical health data in real
time. This funding would also support efforts to modernize our
public health workforce.
Complex data systems require highly-skilled people to use
and maintain them, interpret the data, and develop and deploy
actionable interventions. Ranking Member Cole, you often say,
and I know you would agree, Chair DeLauro, that we are more
likely to die in a pandemic than we are from a terrorist
attack. You are right. Whether it is Ebola, measles, drug-
resistant bacteria, like Candida auris or E. Coli, all making
headlines this week, public health threats are persistent and
constantly evolving here at home and overseas. Effective
prevention, detection, and response relies on public health
agencies at the Federal, State, and local levels working
together with healthcare providers and the public.
Unfortunately, the Nation's public health data systems are
antiquated, in dire need of security upgrades. Paper records,
phone calls, spreadsheets, and faxes requiring manual data
entry are still in widespread use and have significant
consequences: delayed detection and response, lost time, lost
opportunities, and lost lives. As an epidemiologist in Florida
and now in my role representing epidemiologists nationwide, I
have personally felt frustration and anguish and seen my
colleagues suffer, too, when we want to provide answers to
community members, but despite wanting to help, can't because
our public health data systems are impediments, not catalysts.
With the current E. Coli outbreak that is now impacting
five States, public health departments cannot determine the
source because the data are moving slower than the disease.
During last fall's E. Coli lettuce outbreak, my exasperated
colleague said, ``We took pictures of the computer screens to
share via text, photos of laboratory reports because the data
systems couldn't share the information.'' Another current
example is my colleague's story in Pennsylvania. A bad actor
manufacturing plant was releasing lead into the air. She wanted
to provide the best actionable data to parents asking the right
questions. How many children have been tested? Does my child
need to be tested? She doesn't have the answers because
providers send paper lab reports, and the stacks take time to
manually enter.
I challenge you to look at the last page of my written
testimony and decipher two examples from the millions of
barely-legible, handwritten, paper-led lab reports received
each year while I was in Florida. To protect our Nation's
health security, we need more, better, faster, and secure data.
CSTE and our partners in this effort, the Association of Public
Health Laboratories, NAPHSIS, and HIMSS, together with more
than 80 institutions, believe the time has come to take a
coordinated, comprehensive, strategic approach to building a
public health data superhighway of the 21st century. This data
superhighway will help all of the diseases and conditions that
you have heard about today and more.
And while our funding approach is new, the core data
systems for this information superhighway already exist, have
demonstrated value, and are used to varying degrees in State
and local health departments. We don't have a science problem.
We have a resource problem.
Funding is needed to bring all jurisdictions online with
all core systems and to support CDC to build its own secure
platform to receive electronic data from States. We also know
lawmakers must raise the caps to avoid devastating cuts to
domestic programs, and we know our effort must be funded with
new money. It can't come at the expense of public health
programs. A robust, sustained commitment to transform today's
public health data system will leave a lasting impact on
America's health.
We look forward to working with you, and I thank you for
the opportunity to testify before you today. I welcome your
questions.
[The information follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Ms. DeLauro. Thank you very much. I have to say your
testimony was serendipity in many ways. I had the opportunity
last week to sit down with the CDC director, Dr. Redfield, and
spoke precisely about this issue. And I committed to him,
working together, to look at what we need to do in this area
because the biggest thing that I hear from the folks in my
community, the healthcare professionals, the epidemiologists,
is that we do not have a public health infrastructure. And that
the key to that is the data, so that we are hamstrung.
And so the necessity, I think you said it well, we have the
science, we don't have the resources. So that is clearly on the
CDC director's radar screen, and together we spoke really about
really putting together a plan in which to move forward on. And
one of the things we also talked about was the opportunity for
this subcommittee to visit CDC and do that, and get a briefing
in general about what to do in this area. So you are really
right on target, and thank you for the strength of your
comments.
Ms. Hamilton. Thank you.
Ms. DeLauro. Congressman.
Mr. Cole. I had exactly the same visit with Dr. Redfield.
[Laughter.]
Mr. Cole. So he is working really hard on this, and he made
precisely the same points. And I do hope, and I would certainly
commit to join, Madam Chair, that we can make that journey down
there. I have been down there a couple times myself. They do
extraordinary work, but this was actually his number one
priority, and this is something that, frankly, the committee
will have to act beyond what the Administration has
recommended. We have been doing that pretty consistently. I
think we will probably do it again.
But as I told him, really what we need out of you is where
will the money make the difference. I mean, help us identify
these three or four things that literally if we are going to
spend more than requested, we need to know we are spending it
on something that really matters. And, again, you will be happy
to know this really was, I mean, your testimony. Do you guys
talk to one another a lot or something because it is a nice
one-two punch.
Ms. Hamilton. In fact, when you come to Atlanta, the CSTE
national offices are right next door, and we would welcome you
all to come.
Mr. Cole. That would be great. No, that would be good. It
is a great trip. I will tell you, it is an inspiring thing to
see, and, you know, I wish more of our members had an
opportunity to do that just in the sense they would recognize.
We all sort of understand intuitively the value of research at
the NIH, but this practical application, you know, is really,
in many ways, the lifesavings or disease-preventing part of
this, and if anything, we have probably under invested there.
And, you know, so I think you are here at a good time because
this is the direction we are looking for. I yield back.
Ms. DeLauro. Thank you.
Ms. Hamilton. Thank you. Thank you very much.
Ms. DeLauro. Shawn Dougherty.
Mr. Dougherty. Good afternoon.
Ms. DeLauro. Shawn, you are recognized for 5 minutes. Thank
you.
Mr. Dougherty. Thank you.
----------
Tuesday, April 9, 2019.
AMERICAN FEDERATION OF STATE COUNTY AND MUNICIPAL EMPLOYEES (AFSCME)
WITNESS
SHAWN DOUGHERTY, AFSCME COUNCIL 4 MEMBER AND SUBSTANCE ABUSE COUNSELOR,
AMERICAN FEDERATION OF STATE COUNTY AND MUNICIPAL EMPLOYEES
(AFSCME)
Mr. Dougherty. Chairwoman DeLauro and Ranking Member Cole,
my name is Shawn Dougherty, and I am proud to be here today as
a member of AFSCME Council for Local 391 to speak about the
need to fund the loan repayment program for substance abuse
treatment workers at $25,000,000 for this coming Fiscal Year.
For me, funding this loan repayment program is about
respect. I am a correctional substance abuse counselor. I work
with 30 inmates in an outpatient group setting and another 90
men in an inpatient therapeutic community at the Carl Robinson
Correctional Institution in Connecticut. My clients come from
all over Connecticut. The majority of the inmates I see are in
prison because of their addiction. We are short staffed and
have high caseloads, but I am passionate about my work because
I can make a difference in someone's life and the relationship
with their kids, and family, and the community.
My father struggled with addiction during my formative
years. I remember being a scared 5-year-old sitting in the car
waiting for my dad while he went to the dealer to get drugs. I
wondered if he was coming back. I am proud that he has been
clean and sober for 30 years. That gut-wrenching experience
fuels my passion for the behavioral healthcare field and my 21-
year career.
When I see the kids coming to visit their fathers in
prison, it reminds me why I do the work I do. Whatever the job
title--counselor, clinician, therapist--AFSCME members are
united in their steadfast commitment to the work we do. For us,
this work is not just a job, it is a calling. For us, this work
matters because it means something to help someone who has
experienced horrible trauma, find that they already possess the
courage to move forward on his or her own terms. This work
matters because it means something when an inmate can find
their way out of addiction and chaos that brought them to
prison and turn their life around, and to counsel their own
peers. In fact, it means everything.
Every behavioral healthcare worker deserves respect. We
work to help individuals recover from addiction, relapse, mend
fractured families, and make our communities stronger,
healthier, and more resilient. We see how social, economic, and
racial inequities affect overall mental health and wellbeing.
We also see how addiction does not discriminate by economic
status. In our work, we are challenged by high caseloads,
clients' increasingly complex healthcare needs, stressful
working conditions, and, very often, crushing student loan
debt. I have a master's degree in professional counseling, and
I am a licensed alcohol and drug counselor. I have amassed
roughly $92,000 in student loan debt to earn my master's
degree.
Last year, Congress created a new loan repayment program as
part of the Support for Patients and Communities Act. The new
loan repayment program focuses on the substance use disorder
treatment workforce. I would benefit from this program. If
funded, it could provide up to 6 years of student loan
repayments. This loan repayment program can help attract and
retain behavioral healthcare workers who work in substance use
disorder treatment and recovery support.
It expressly covers a range of professional roles,
including social workers, therapists, addiction counselors,
recovery coaches, to name a few. I want to be the first in line
to apply for this program. It would alleviate financial stress
in my family life and allow me to focus on my work instead of
juggling my student loan payments.
Creating the program was a good first step. Now Congress
needs to take the step and fund this new program, $25,000,000
for the coming Fiscal Year. I urge you to fund this new program
at the $25,000,000 level. I would also urge you to make sure it
is successful to all frontline substance use disorder treatment
workers. Funding this new loan repayment program is an
important way for Congress to show respect for the work we do
and the people we serve.
Thank you for the opportunity to testify on behalf of my
union and for many behavioral healthcare workers across the
Nation who would benefit from the program.
[The information follows:]
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Ms. DeLauro. Thank you very much for your testimony.
Mr. Dougherty. Now I can loosen my tie. [Laughter.]
Ms. DeLauro. You can loosen your tie. You could have done
that before, and from Connecticut, yes. [Laughter.]
Ms. DeLauro. We are glad to have you here today, but thank
you. One side of the work that you do, we met earlier in the
hallway, and what is happening in correctional institutions in
terms of the treatment we provide for those who are there, the
kinds of services that you are talking to them about, you know,
where do they go when they leave the correctional institution
with the treatment program? Do they have a job? Do they have
housing? Do they have transportation?
Without these kinds of services, you know, they are likely
to find themselves back in a correctional institution. But the
work that you do and, you know, the commitment that you have is
really very, very critical. I want you to know that while she
is not here this afternoon, our colleague, Katherine Clark of
Massachusetts, is a strong proponent of the programs that you
speak of and of looking at how we might be able to increase
that program, recognizing that you are doing some of the most
important and critical work in our society today.
And people need to be compensated for that effort and also
to be able to look at whether or not there is loan forgiveness
or other kinds of efforts in which we don't put a crushing
economic burden on people who are trying to help turn others'
lives around. So thank you so much for the work that you do and
for being here and pointing out this program. Thank you.
Mr. Dougherty. Thank you.
Mr. Cole. Madam Chair, I think any time a witness finishes
90 seconds ahead of time, we ought to help that guy.
[Laughter.]
Mr. Cole. So number one, thank you. My father suffered with
the very same addiction that your father did, and it says a lot
about you that you took that challenge and turned it into
something that is helping a lot of other people. Chair, just
for the record so you know, and I know my good friend, the
chair knows, our former chairman of the full committee, Hal
Rogers from Kentucky, is also a big advocate of this program
and has been pushing it.
Ms. DeLauro. Yes.
Mr. Cole. So this really does enjoy a lot of bipartisan
support and from people that know. I mean, Hal has probably, or
Chairman Rogers, has probably done more than anybody else in
the Congress on the opioid addiction effort and to beef that
up, put more money there, and get us doing the right things
there. So, you know, again, the chair is going to have a lot of
tough decisions to make, but this is certainly one that I think
would get bipartisan support. So thank you for coming, and
thanks for what you do.
Mr. Dougherty. Thank you.
Ms. DeLauro. Dr. J. Carter Ralphe. Thank you.
Dr. Ralphe. There is some pressure to finish early all of a
sudden. [Laughter.]
Ms. DeLauro. Yeah, recognized for 5 minutes.
----------
Tuesday, April 9, 2019.
UNIVERSITY OF WISCONSIN SCHOOL OF MEDICINE AND AMERICAN HEART
ASSOCIATION
WITNESS
J. CARTER RALPHE, M.D., CHIEF OF THE DIVISION OF PEDIATRIC CARDIOLOGY
WITHIN THE UNIVERSITY OF WISCONSIN SCHOOL OF MEDICINE AND PUBLIC
HEALTH; AND CO-IRECTOR OF UW HEALTH, AMERICAN HEART ASSOCIATION
Dr. Ralphe. My name is Carter Ralphe. I am a pediatric
cardiologist, pediatrician, chief of pediatric cardiology, and
director of congenital heart problems at the University of
Wisconsin, Madison School of Public Health. Thank you, Chairman
DeLauro, Ranking Member Cole, and the distinguished members of
the subcommittee, and, in particular, Congressman Pocan, who I
had an opportunity to meet earlier this morning. He is my
representative in Congress.
It is truly an honor to submit this testimony today and to
hear the powerful testimony that has come before mine. I am
here on behalf of the American Heart Association and with the
strong support of UW Health, which is the academic medical
center and health system for the University of Wisconsin, which
also includes the American Family Children's Hospital. My
testimony today is in support of continued investment in the
National Institutes of Health and for a total funding level of
$41,600,000,000 for Fiscal Year 2020, and specifically a 6
percent increase in the NHLBI's appropriation to $3,710,000,000
for Fiscal Year 2020.
I believe deeply in continued Federal investment in the
NIH, specifically in research for heart disease for probably
three reasons that touch me personally. First it is the
extraordinary return on investment that we are seeing right now
in the treatment of congenital heart disease and congenital
heart defects in infants. Second, the progress we are making in
the understanding and treatment of cardiomyopathy, which is an
area that I personally perform research in. And thirdly for the
profoundly positive and lasting impact that we have on human
health by investing in the new generation of physician
scientists with training grants, which we have heard about from
others.
First, I would like to start with a story about one of my
own patients, one of many that I take care of. Little McKinnley
was a baby born about 2 months prematurely. The circulation in
her heart was completely abnormal, such that the blue blood
never made it back to the lungs to pick up oxygen, and was sent
back out to the body. It is called transposition. Her heart
size was about half the size of a walnut if you can imagine,
and she was deeply premature, so we couldn't really offer
anything immediately.
She was taken to our catherization lab and a procedure was
performed to enable her to survive for the first several weeks.
And then she was treated by a variety of subspecialists for
over 2 to 3 months while she was able to grow to a size
sufficient to have heart surgery successfully performed. And
thanks to that sophisticated and complex care, McKinnley did
grow to the point where we were able to perform open heart
surgery which saved her life.
Twenty years ago, even less, she would not have survived.
Survival for complex congenital heart disease was incredibly
poor, 5 to 10 to 15 percent. But thanks to all of the work that
has been done over the last 15 to 20 years, congenital heart
defects now have a survival of roughly 95 percent across the
country. That is due to funding by the NIH.
To cure congenital heart defects, NIH actually did not
launch one single high-profile major research program to
develop one miracle drug. Instead, they made consistent,
careful investments to decipher the underlying biology and
develop a whole suit of treatments, from tools designed to peer
into the human body to make accurate diagnoses, techniques used
on the operating table and the medications provided
perioperatively, to the comprehensive care approach we take
with families. Virtually every single element of the treatment
spectrum to save these babies is the direct result of your
investment in these Federal research projects over year.
And when the NIH first started investing in the basic
science that led to these lifesaving developments, there was
not always a clear path to success. It is a vital role that
government plays in early stage and basic research. You as our
elected officials wisely allocate the taxpayers' dollars to the
NIH, and NIH invests in the ideas and the people and the work
in the communities that you represent, and I am here to report
the end result is absolutely saving lives every single day.
Thanks to significant research efforts supported by the NIH
over decades, we all understand how to reduce our risk of
developing cardiovascular disease. However, although advances
in research and prevention have produced large reductions in
mortality, cardiovascular disease remains the leading cause of
death and disability in the United States. So my second reason
for supporting the NIH and NHLBI funding is to continue to
advance progress in combatting heart disease.
My own research efforts, with support from the NIH, focused
on inherited cardiomyopathies of which an estimated 1 in 200
Americans are at risk. Cardiomyopathies involve an abnormal
thickening of the heart, which causes it to develop
dysfunction. Unfortunately, the scariest part of this disease
is the sudden unexpected death, often in teenage athletes. We
just had one in Waukesha, Wisconsin last week out of the blue.
Unfortunately, we don't have a great grasp on how the
individual mutations that cause this disease lead to abnormal
muscle thickening. Some of the families carrying these
mutations have severe disease. Some members of the same family
have very mild disease. As a result, we have very little
information or guidance of any certainty to provide our
patients. Recently I cared for a family just 2 weeks ago where
the father, a 37-year-old triathlete, prime health, dropped
dead suddenly. His widow and his sons are facing life without
him as well as the possibly that they might be affected. In the
absence of accurate risk assessment, they are obliged to
undergo expensive cardiac testing every 3 to 5 years to make
sure they are okay. They now must figure out how to live with
this terrible, terrible uncertainty.
Thankfully the NIH continues to fund the work that will
lead to eventual peace of mind for countless people and prevent
the premature loss of loved ones. I am proud to say that the
NIH has invested in my own lab over the years to try to advance
this field.
For my final point, I offer another critical reason to
support the NIH, and this may be one of the most important: the
effect that small, early-stage investments can make toward a
lifetime of translation and clinical research contributions. I
personally am sitting here today as a physician-scientist
straddling the world of research and clinical care because I
received an early training grant from the NIH in the form of a
K08. I could have easily chosen a different path, which might
have been an easier path in likelihood, of just pure clinical
care. But the funding and support from the NIH helped shift my
direction.
These awards, known as the K08 awards, and other training
grants offered to pre- and post-doctoral fellows have the
explicit purpose of providing individuals with an intensive
supervised research career development experience. This is
validation at a critical time in our career, and it shifts our
path. It is the way of attracting the best and brightest to
research, the big questions for the future.
Supporting the development of research scientists in the
United States, I think, is critical. I think the physician-
scientists offer a unique perspective, and they are able to
quickly identify gaps in clinical care and push the boundaries
of science to solve them, often providing the catalyst that
translates basic research findings into lifesaving treatments.
I appreciate this opportunity to testify on behalf of the
American Heart Association and the University of Wisconsin at
Madison in support of increased funding for the NIH and NHLBI.
We have come extremely far, and we have saved many, many lives,
but I would like to spend the rest of my career ensuring that
we do more. The role of NIH funding in the overall arc of
advancements in our human health is indisputable. I am proud to
be associated with an institution that has the foresight to
understand and embrace this long and difficult road towards
progress. Thank you.
[The information follows:]
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Ms. DeLauro. Thank you very much, Doctor. I think there is,
as you have probably heard all afternoon, bipartisan support
for increasing the funding for the NIH. We are all very, very
much aware of where the discoveries can take us. We are also
very much aware that the cutbacks in NIH really leave open
areas for discovery. If we are unable to provide the grants for
the research, then we will not get to some of the cures that
are so critically important.
I believe the President's budget, it is $5,200,000,000 in a
cut to the NIH, and I think I can say that for the ranking
member and myself, that will not stand. So we thank you for
your advocacy for the NIH. As important or more important is
the work that you do in saving lives because that is what
science and discovery is all about, so thank you very much.
Mr. Cole. Thank you, and, again, I agree with the chairman.
We have moved a long way in the last 4 years in a very
bipartisan way, and I don't think this subcommittee is going to
be tolerant of reversing that direction. Doctor, I think that
is a really important point to make. When we started this, it
wasn't just to put in more money for research. It was to send
signals to young people that were going into promising fields
that there is going to be a career here, and that it is going
to be a sustained commitment. I think that is actually more
important than setting goals, and sometimes it just to know
that we have a process in place that every year it is going to
be an inflation plus increase so scientists can plan their
research accordingly. The NIH can pick its priorities
accordingly. And, frankly, young people that are wondering how
am I going to take this very difficult path and spend all these
years, and then wind up without the ability to actually get the
research done, know that that is not going to be the case. We
are going to get to where we need to be.
So it is a powerful reinforcement to your testimony as to
what we have been trying to do. We actually had a member in
here that represents the Mayo Clinic, not on the subcommittee,
on Member Day, and he happened to have three young researchers
with him that were physician-scientists in the making. And they
were in his office, and he said, hey, I am going to go down and
testify, why don't you come down? I told this to Dr. Collins
later. That was exactly what we wanted to see when we began
this path, these young people making critical decisions
professionally, you know, could do so with some sort of
confidence that there would be the funding streams necessary to
do the critical work that they wanted to do. So, again, thanks
for that making that point. Thanks for the work that you do.
Dr. Ralphe. Thank you.
Ms. DeLauro. Timothy Haylon. Timothy, you are recognized
for 5 minutes. Thank you for being here.
----------
Tuesday, April 9, 2019.
MYOTONIC DYSTROPHY FOUNDATION
WITNESS
TIMOTHY HAYLON, MYOTONIC DYSTROPHY FOUNDATION
Mr. Haylon. Chairwoman DeLauro and Ranking Member Cole,
thank you for providing me with this opportunity to speak to
you today. I am humbled and honored to testify before your
subcommittee on behalf of approximately 140,000 Americans
living with myotonic dystrophy and the Myotonic Dystrophy
Foundation, the world's largest patient organization focused
solely on myotonic dystrophy. I would like to thank you,
Chairwoman DeLauro, and the members of the subcommittee for
your many years of support on behalf of efforts to increase
Federal support for this critical biomedical research.
My name is Timothy Haylon. I am 58 years old and live in
western Massachusetts. In 2001, I was diagnosed with myotonic
dystrophy. Myotonic dystrophy is a debilitating, inherited, and
progressive genetic disorder that can cause multiple organ
systems to fail or severely disrupt their function. It is
estimated that 1 in 2,500 individuals, or approximately 140,000
Americans, are living with generally the most severe condition
known as DM1, with many being misdiagnosed or undiagnosed. It
is by far the most common type of muscular dystrophy and far
more prevalent than other more well-known neurodegenerative
conditions, like ALS, cystic fibrosis, and Duchenne muscular
dystrophy.
There are currently no FDA-approved treatments for myotonic
dystrophy, creating a significant unmet need for treatments and
a cure. Myotonic dystrophy causes physical and cognitive
disabilities that significantly limit personal mobility and the
ability to perform daily live activities and work as disease
severity worsens. The most common effects of the disorder are
muscle problems, including muscle weakness, trouble relaxing
the muscle, and muscle waste, and it gets worse over time.
However, it is misleading to think of myotonic dystrophy as
only a muscle disorder because it also affects many other
bodily functions, including the brain, heart, lungs, and
gastrointestinal system. The disorder can also cause problems
with cognitive function, personality, vision, and speech. Since
it is genetic disease passed on from generation to generation,
it is assumed that a parent has the trait. My father died at 62
after being handicapped for many years without ever having
received a diagnosis. It wasn't until my older sister and an
older brother had symptoms did the term ``myotonic dystrophy''
become a reality. Even though it had a name, little was known
about the effects.
When I was first diagnosed with myotonic dystrophy, the
doctor walked in with the results of the tests and said you
have myotonic dystrophy. That was the full extent of our
conversation. No treatment options or interventions were
mentioned. I left the office, continued to raise my family,
worked full time, go to school with my master's degree part
time, and coached my kids in their sports endeavors. It wasn't
until I started experiencing daytime fatigue that I realized
something was happening. I began to fall off and do the foot
dropping and poor balance. My strength was waning, and I had
problems with muscle cramping.
In 2007, I had back surgery due to a tumor in my back.
Since then I have cataract surgery due to my myotonic dystrophy
specific cataracts, and a cardiac defibrillator inserted into
my heart due to myotonic dystrophy related arrythmias. The pain
in my back and legs got worse, causing a change in jobs. I went
from a full-time to a part-time job that was less strenuous.
After several years, I was unable to continue this job as I was
no longer able to function as the job required. Throughout this
journey I have met with a neurologist, neurosurgeon,
cardiologist, pulmonologist, gastroenterologist, urologist,
podiatrist, and physical therapist. These doctors are rarely
able to come up with a treatment and regime to lessen the
effects of myotonic dystrophy.
Overall, this disease affects every part of my body, and
the end result is a big difference in the quality of life I
experience. As I look into the future, I hope that treatment to
lessen the effects of myotonic dystrophy and eventually a cure
will happen. I have three children, and one has been diagnosed
while another is showing signs of the disease. It is hard to
know that they will suffer if no remedy is found.
I am here today to advocate for funding to continue the
research into a cure. Again, there are no FDA-approved
treatments for myotonic dystrophy. More significant investments
in myotonic dystrophy research is the key. Advancements in
science and tools needed for drug development efforts and
myotonic dystrophy holds significant promise for major advances
across many other triplet repeat neurodegenerative diseases
such as Huntington's Fragile X and certain forms of ALS.
Under Chairman DeLauro's leadership and the support of this
subcommittee, Congress has supported report language
encouraging the National Institute of Health to prioritize
myotonic dystrophy research and highlighting the need for young
researchers in this field. I want to take this opportunity to
thank the subcommittee for your past and continued support. It
is because of your leadership, the work of researchers across
the country, and the work of the Myotonic Dystrophy Foundation
that I am hopeful we will find a cure.
I urge you to continue to support efforts to increase
overall Federal funding for NIH and myotonic dystrophy research
as part of the Fiscal Year 2020 Labor, Health and Human Service
appropriations bill. Thank you.
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Ms. DeLauro. Thank you so much, Tim. Thank you very, very
much for being here, and thank you for your strength and your
courage for you and for your family. And I think you were very
poignant when you talked about your dad at 62 years and without
a diagnosis and, you know, when you received a diagnosis
without anything----
Mr. Haylon. Right.
Ms. DeLauro [continuing]. In terms of where you go and what
you do. And your point about us and the NIH, which is why we
are so committed to biomedical research if you were here
earlier. But I am here today because of the grace of God in
biomedical research. I am a survivor of ovarian cancer some 33
years ago, and so little was known about where we go. So there
is a great power in discovery, in the scientific discovery and
this area, so I am proud and happy to work to see that we can
encourage the NIH.
What we don't like to do is to direct them in a particular
way, but we have seen today the growing need in several areas
that have not had the kinds of research and discovery that are
needed to be at an early state of the research so that we can
build on it as we have built on other diseases and illnesses
where we get today where we are looking at the potential cures
of, you know, almost and so forth.
So I think it will be important for us to listen to some of
the directors of the various institutes at the NIH about the
work that they are doing and look at those areas over the years
which haven't received funding or the kind of funding that
would begin to help us to make a difference. We can't tell you
that it will make all the difference in the world and we will
get to that movement or that place where, you know, where we
are within reach of where we need to be. But we can tell you
that we will look at that process and look at how we begin to
bring some relief to people who are suffering, and to you and
also to your children.
So thank you for the courage of being here today.
Mr. Haylon. Thank you.
Ms. DeLauro. And for your very powerful testimony. God
bless you. Thank you.
Mr. Cole. Again, I join my friend, the chair, and thank you
very much for coming and being an advocate.
Mr. Haylon. Thank you.
Mr. Cole. I think your dad would be awfully proud of you
for being here, and I suspect your children are not just proud,
but grateful that you are here because they are fighting on
their behalf as much as your own or anybody else's. So we
respect that, and, again, as my friend the chair says, we
always have limitations to what we would like to do, but we
have tried to pretty steadily expand those limitations so we
can include more people that are searching for cures and
looking for help.
That is one of the obligations the Federal government has,
in my opinion, is to improve the lives of its citizens, and
this is an investment that does exactly that. So, you know, it
is very powerful to have you come here and testify, and we are
all very grateful for it.
Mr. Haylon. Thank you very much.
Mr. Cole. Thank you.
Ms. DeLauro. Myra Jones-Taylor. If I might just say a word,
Myra Jones-Taylor is the chief policy officer at Zero to Three,
national leaders on infant-toddler policy and program
development, but this is not her first rodeo. Myra served as
the founding commissioner of the Connecticut Office of Early
Childhood. It was a cabinet-level State agency which was
responsible for early care and education, home visiting, early
intervention, you know, licensing, et cetera. And she has been
a major force in our looking at what we need to be doing for
infants and toddlers in our country. Thank you for being here.
You are recognized for 5 minutes, Myra.
----------
Tuesday, April 9, 2019.
ZERO TO THREE
WITNESS
MYRA JONES-TAYLOR, PH.D., ZERO TO THREE
Ms. Jones-Taylor. Thank you, Congresswoman. Thank you,
Chairwoman DeLauro, my former congresswoman, and Ranking Member
Cole. Thank you for inviting me to testify before you today. As
you heard, I am Myra Jones-Taylor, chief policy officer at Zero
to Three, a national nonprofit that for more than 40 years has
translated the science of early childhood development to make
sure that all children, especially babies, have a strong start
in life.
I have three funding requests today, great and small, each
of which would help support the development of our future
workers, innovators, and leaders. I request an increase of
$5,000,000,000 for the Child Care and Development Block Grant,
CCDBG; a $500,000,000 increase in the set-aside for expanding
Early Head Start; an increase of $15,000,000 for the Infant and
Early Childhood Mental Health Promotion Intervention and
Treatment Grants. I also underscore the urgent need to lift the
cap on domestic spending to accommodate these and other needs
in children's programs. If we cannot make room for investments
in our children, we are essentially capping our future.
As a leading early childhood organization, we appreciate
the longstanding support of both the chair and the ranking
member of this committee, no matter which seat or which chair
you sit in, for Early Care Learning Programs and the Infant-
Toddler Court Program.
The first 3 years of life are a time in human development
unmatched by any other point later in life. Twelve million
infants and toddlers live in this country, and the foundation
we lay for them today is the most important investment we can
make for our society tomorrow. Yet our recently-released State
of Babies Yearbook reveals troubling early warning signs that
too many children face conditions that place their development
at risk. Just one statistic. We know that nearly 1 in 4 babies
in this country live in poverty. I urge you to make their
potential your priority as you make funding decisions for
programs to help them thrive.
So my first ask is that you double CCDBG with a
$5,000,000,000. The vast majority of babies live in low- to
moderate-income families, yet we know infant-toddler childcare
exceeds the cost of public college in 28 States, putting
quality childcare far out of reach for most families. CCDBG
helps low-income families purchase care, which can play a
pivotal role in our Nation's childcare crisis if we figure this
one out.
After years of stagnant funding, we appreciate your
leadership in providing a historic boost by nearly doubling
CCDBG's funding in 2018. This investment has made a real
difference. But we need to build on this progress to close gaps
and ensure more children and families have access to affordable
child care. Only 1 in 6 federally-eligible children receive
assistance. We ask you to continue your strong leadership and
double CCDBG funds again, adding $5,000,000,000 to build strong
brains and a stronger future. I know it is a bold ask, but
childcare is a critical need, and America's babies and their
families are counting on you.
My second ask is that we ask that you add $500,000,000 for
Early Head Start expansion. As you all know, Early Head Start,
which will turn 25 next month, is the only Federal program
focused on ensuring strong development for infants, toddlers,
and pregnant women who live in poverty. Early Head Start's
research shows that the program has positive impacts on
children's cognitive and social-emotional development, areas
important to success in school and later in life. It also
improves parents' interactions with their children and ability
to support positive early development, and prepares them to
move toward economic stability, something we have heard today
is very important.
Yet this successful program reaches only 7 percent of
income-eligible children. We ask that you continue to grow this
funding through the funding mechanism that is really the only
way to ensure direct increase to Early Head Start. There is no
other way to do this directly, and we ask you to do that by
adding $500,000,000. We also support a $745,000,000 increase or
addition for addressing trauma and adverse childhood
experiences through Head Start.
And finally we ask you to increase funding for Infant and
Early Childhood Mental Health Grants. Sadly, we know that
social-emotional development can go awry in far too many
babies. It is estimated that between 9.5 and 14 percent of
children aged birth to 5 experience emotional or behavioral
disturbances. These young children who have not yet entered the
K to 12 system are particularly invisible to our mental health
system, which is not designed to serve their needs. So with the
Infant and Early Childhood Mental Health Grants, Congress
recognized the importance of mental health of young children
and their families. We are so grateful to you all for that.
We greatly appreciate the $5,000,000 that you funded
initially for this program. However, the grants could only be
awarded to 10 entities in eight States. Therefore, we ask the
subcommittee to increase funding by to increase funding by
$15,000,000 to a total of $20,000,000, and consider a grant
level of at least $1,000,000.
In closing, I thank he subcommittee for this opportunity to
appear before you today and really to be a part of this
American experience. It was a very moving couple of hours here,
in a very hot room, I will add. [Laughter.]
Ms. Jones-Taylor. As you make decisions about the level of
domestic spending and specific funding levels, I urge you to
think about the 4,000,000 babies who will be born this year,
and ensure that we do not squander the potential of a single
one. Thank you so much.
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Ms. DeLauro. Well done. Well done. And as co-chair of the
Congressional Baby Caucus, which is a bipartisan effort, I
might add----
Mr. Cole. Everybody is for babies. [Laughter.]
Ms. DeLauro. Congressman Denny Rehberg, you know, and I
started the effort, Congressman Fleischmann and I, and I guess
now we are trying to get--well, I don't know. Maybe I should
approach my colleague here, you know, Congressman Cole here----
Ms. Jones-Taylor. He would love to----
Ms. DeLauro [continuing]. To be the co-chair of the
Congressional Baby Caucus. Anyway, but the areas that you
mentioned, Early Head Start, you know. I'm a person who views
that we need universal preschool for kids. We know when kids
are learning at zero to three, we don't need any further
studies. We have all the data that we need in order to move
forward to think through about how our children are learning,
what they are learning, and how they can achieve the best
outcomes and what we can do in that direction.
I have spent a long time looking at the issues of mental
health services for youngsters, including children who are
affected by trauma and adverse experiences, and we need to do
much more, in my view, in that area. It is sometimes very hard
to understand that babies are often sometimes--not often--
babies are the recipients of the most abuse in our country. It
is hard to imagine that, but it is true, and that we need to
address this.
One of the things I am going to try to do is to look at the
budget writ large and find out, you know, what is the level of
resources we are providing for infants and toddlers. I would
just say this. I know a number of years ago in Britain, Tony
Blair and Gordy, their budget had to run the scrutiny of what
they were doing for early childhood, for infants and toddlers,
as a part of where they viewed their responsibilities lay. And
I want to applaud you for your advocacy over the years and
shining a spotlight on this area. It is one that I think that I
think we need to spend a lot of time and effort and look and
how we focus resources in this area. So thank you for being
here today.
Mr. Cole. I join the chair in thanking you for your
testimony and, more importantly, your advocacy. When I had the
good fortune to become chairman of this committee with my good
friend, then my partner still, you know, we had not gotten a
bill out of this committee in 5 years. And of course there are
a lot of things in here that are contentious between the two
parties. I asked my chief clerk at the time, I said, increase
the number of hearings we have pretty dramatically because I
know what they want to fight over. What I want to figure out is
what they want to be for.
And the three things that came through on both sides of the
aisle were funding for the NIH, help for first-generation
college kids, and early childhood education, and those were
places where clearly the committee wanted to work together. And
if we could elevate those and kind of deal with the other
things where we don't always have the same point of view, I
thought we had a pretty good chance of getting a bill.
The other thing I was fortunate enough was to have an
understanding chairman in Chairman Rogers, and I said, I need a
higher allocation for the subcommittee if you want to get
something. You know, if it is going to be the stepchild on the
committee where we just cut everything and redirect it towards
defense, then we are not going to get to where we need to go.
But if we have, you know, not an outlandish sum of money, but a
substantial sum where we can met some real needs, I think
members will get excited about doing that, and it has worked
out pretty well. And I know it will work out well under the
leadership of my good friend, the chair.
So but it is important that you come, and I couldn't agree
with you more. Research, my friend the chair is right. We don't
need anymore research, but it is pretty compelling. These are
the very best investments that we make. They have the longest
time horizon ahead of them. And, I mean, forget the academic
outcomes as important as that is. The social outcomes even more
in terms of the likelihood of getting into an addiction problem
or getting into a criminal problem or not finishing school. All
those things get so much better if we are able to impact a
child's life as early as possible, so these are kind of no-
brainer investments that we ought to be making. And certainly I
will be working with my friend to see that we can continue to
make progress in these areas.
And, you know, never hesitate to come and ask boldly about
anything because I guarantee you everybody else does.
[Laughter.]
Mr. Cole. So you shouldn't be any different, and we expect
that. Look, we have had, you know, a couple dozen witnesses
today. Nobody here is advocating for anything that anybody in
this audience, if you listened through the whole show, wouldn't
say, yeah, that is a really good idea, that is a really good
investment. We don't get a lot of that here, and we just have
to make sure that we are wise stewards of whatever resources
that we get, and we don't always get to control that.
But, again, we appreciate the advocacy. We appreciate the
work over many, many years. And as you know, this committee
will continue to try and work with you because we believe in
what you are doing.
Ms. Jones-Taylor. Thank you.
Ms. DeLauro. I would just say when the ranking member
talked about, you know, bold and he said not outlandish amounts
of money. I would like an outlandish amount of money for this
subcommittee. [Laughter.]
Ms. DeLauro. So there we go.
Ms. Jones-Taylor. Hear-hear. As the daughter of a man whose
life was extended by 20 years because of NIH, and as a first-
generation college student----
Ms. DeLauro. Hear-hear.
Ms. Jones-Taylor [continuing]. And graduate of Yale----
Ms. DeLauro. Okay.
Ms. Jones-Taylor [continuing]. And a baby advocate, I thank
you.
Ms. DeLauro. Thank you. Thank you so much. That concludes
the testimony of our public witnesses, and let me call this
hearing to a close. Thank you all very, very much.
[Outside witness testimony for the record follows:]
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