[House Hearing, 118 Congress]
[From the U.S. Government Publishing Office]
EXAMINING PROPOSALS THAT PROVIDE ACCESS
TO CARE FOR PATIENTS AND SUPPORT RE-
SEARCH FOR RARE DISEASES
=======================================================================
HEARING
BEFORE THE
SUBCOMMITTEE ON HEALTH
OF THE
COMMITTEE ON ENERGY AND COMMERCE
HOUSE OF REPRESENTATIVES
ONE HUNDRED EIGHTEENTH CONGRESS
FIRST SESSION
__________
JUNE 14, 2023
__________
Serial No. 118-48
[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]
Published for the use of the Committee on Energy and Commerce
govinfo.gov/committee/house-energy
energycommerce.house.gov
__________
U.S. GOVERNMENT PUBLISHING OFFICE
57-131 PDF WASHINGTON : 2025
-----------------------------------------------------------------------------------
COMMITTEE ON ENERGY AND COMMERCE
CATHY McMORRIS RODGERS, Washington
Chair
MICHAEL C. BURGESS, Texas FRANK PALLONE, Jr., New Jersey
ROBERT E. LATTA, Ohio Ranking Member
BRETT GUTHRIE, Kentucky ANNA G. ESHOO, California
H. MORGAN GRIFFITH, Virginia DIANA DeGETTE, Colorado
GUS M. BILIRAKIS, Florida JAN SCHAKOWSKY, Illinois
BILL JOHNSON, Ohio DORIS O. MATSUI, California
LARRY BUCSHON, Indiana KATHY CASTOR, Florida
RICHARD HUDSON, North Carolina JOHN P. SARBANES, Maryland
TIM WALBERG, Michigan PAUL TONKO, New York
EARL L. ``BUDDY'' CARTER, Georgia YVETTE D. CLARKE, New York
JEFF DUNCAN, South Carolina TONY CARDENAS, California
GARY J. PALMER, Alabama RAUL RUIZ, California
NEAL P. DUNN, Florida SCOTT H. PETERS, California
JOHN R. CURTIS, Utah DEBBIE DINGELL, Michigan
DEBBBIE LESKO, Arizona MARC A. VEASEY, Texas
GREG PENCE, Indiana ANN M. KUSTER, New Hampshire
DAN CRENSHAW, Texas ROBIN L. KELLY, Illinois
JOHN JOYCE, Pennsylvania NANETTE DIAZ BARRAGAN, California
KELLY ARMSTRONG, North Dakota, Vice LISA BLUNT ROCHESTER, Delaware
Chair DARREN SOTO, Florida
RANDY K. WEBER, Sr., Texas ANGIE CRAIG, Minnesota
RICK W. ALLEN, Georgia KIM SCHRIER, Washington
TROY BALDERSON, Ohio LORI TRAHAN, Massachusetts
RUSS FULCHER, Idaho LIZZIE FLETCHER, Texas
AUGUST PFLUGER, Texas
DIANA HARSHBARGER, Tennessee
MARIANNETTE MILLER-MEEKS, Iowa
KAT CAMMACK, Florida
JAY OBERNOLTE, California
------
Professional Staff
NATE HODSON, Staff Director
SARAH BURKE, Deputy Staff Director
TIFFANY GUARASCIO, Minority Staff Director
Subcommittee on Health
BRETT GUTHRIE, Kentucky
Chairman
MICHAEL C. BURGESS, Texas ANNA G. ESHOO, California
ROBERT E. LATTA, Ohio Ranking Member
H. MORGAN GRIFFITH, Virginia JOHN P. SARBANES, Maryland
GUS M. BILIRAKIS, Florida TONY CARDENAS, California
BILL JOHNSON, Ohio RAUL RUIZ, California
LARRY BUCSHON, Indiana, Vice Chair DEBBIE DINGELL, Michigan
RICHARD HUDSON, North Carolina ANN M. KUSTER, New Hampshire
EARL L. ``BUDDY'' CARTER, Georgia ROBIN L. KELLY, Illinois
NEAL P. DUNN, Florida NANETTE DIAZ BARRAGAN, California
GREG PENCE, Indiana LISA BLUNT ROCHESTER, Delaware
DAN CRENSHAW, Texas ANGIE CRAIG, Minnesota
JOHN JOYCE, Pennsylvania KIM SCHRIER, Washington
DIANA HARSHBARGER, Tennessee LORI TRAHAN, Massachusetts
MARIANNETTE MILLER-MEEKS, Iowa FRANK PALLONE, Jr., New Jersey (ex
JAY OBERNOLTE, California officio)
CATHY McMORRIS RODGERS, Washington
(ex officio)
C O N T E N T S
----------
Page
Hon. Brett Guthrie, a Representative in Congress from the
Commonwealth of Kentucky, opening statement.................... 1
Prepared statement........................................... 3
Hon. Michael C. Burgess, a Representative in Congress from the
State of Texas, prepared statement............................. +6
Hon. Anna G. Eshoo, a Representative in Congress from the State
of California, opening statement............................... 10
Prepared statement........................................... 12
Hon. Cathy McMorris Rodgers, a Representative in Congress from
the State of Washington, opening statement..................... 14
Prepared statement........................................... 16
Hon. Frank Pallone, Jr., a Representative in Congress from the
State of New Jersey, opening statement......................... 21
Prepared statement........................................... 23
Witnesses
Elizabeth Cherot, M.D., Senior Vice President and Chief Medical
and Health Officer, March of Dimes............................. 25
Prepared statement........................................... 28
Answers to submitted questions............................... 206
Alexis Thompson, M.D., Chief of Division of Hematology, Elias
Schwartz, M.D., Endowed Chair in Hematology, Children's
Hospital of Philadelphia,...................................... 45
Prepared statement........................................... 47
Submitted questions for the record \1\....................... 209
Meredithe McNamara, M.D., Assistant Professor, Yale School of
Medicine....................................................... 52
Prepared statement........................................... 54
Answers to submitted questions............................... 211
Miriam Grossman, M.D., Child, Adolescent, and Adult Psychiatry... 58
Prepared statement........................................... 60
Submitted questions for the record \1\....................... 219
George Manahan, Parkinson's Advocate and Patient................. 71
Prepared statement........................................... 73
Kevin O'Connor, Assistant to the General President for Government
Affairs and Political Action, International Association of Fire
Fighters....................................................... 78
Prepared statement........................................... 80
----------
\1\ Dr. Thompson and Dr. Grossman did not answer submitted questions
for the record by the time of publication. Replies received after
publication will be retained in committee files and made available at
https://docs.house.gov/Committee/Calendar/ByEvent.aspx?EventID=116121.
Legislation \2\
H.R. 3226, the PREEMIE Reauthorization Act of 2023
H.R. 3838, the Preventing Maternal Deaths Reauthorization Act of
2023
H.R. ___, the Action for Dental Health Act of 2023
H.R. 3884, the Sickle Cell Disease and Other Heritable Blood
Disorders Research, Surveillance, Prevention, and Treatment Act
of 2023
H.R. ___, the Firefighter Cancer Registry Reauthorization Act of
2023
H.R. 2365, the National Plan to End Parkinson's Act
H.R. 3391, the Gabriella Miller Kids First Research Act 2.0
Discussion Draft, H.R. ___, the Children's Hospital GME Support
Reauthorization Act of 202360
H.R. ___, the Medicaid Primary Care Improvement Act
Submitted Material
Inclusion of the following was approved by unanimous consent.
List of documents submitted for the record....................... 138
Statement of the Sickle Cell Disease Partnership by Brett Giroir,
M.D., Senior Advisor, June 14, 2023............................ 139
Letter of June 14, 2023, from the Sickle Cell Disease Partnership
to Mrs. Rodgers and Ms. Eshoo.................................. 140
Letter of June 14, 2023, from Sick Cells to Mr. Guthrie and Ms.
Eshoo.......................................................... 142
Statement of The Michael J. Fox Foundation for Parkinson's
Research, June 14, 2023........................................ 145
Statement of the Direct Primary Care Coalition by Troy Burns,
M.D., June 14, 2023............................................ 151
Study, ``Hormone Therapy, Mental Health, and Quality of Life
Among Transgender People: A Systematic Review,'' by Kellan E.
Baker, et al., Journal of Endocrine Society, 2021, Vol. 5, No.
4.............................................................. 159
Statement of the Yale School of Medicine, ``Flawed Medicaid
Report in Florida''............................................ 175
Research paper, ``Biased Science: The Texas and Alabama Measures
Criminalizing Medical Treatment for Transgender Children and
Adolescents Rely on Inaccurate and Misleading Scientific
Claims,'' by Susan Boulware, et al., Yale School of Law, April
28, 2022 \3\
Letter of June 14, 2023, from Barbara Jones, President and Chief
Executive Officer, and Micah Niermann, M.D., Executive Vice
President of Clinical Affairs and Chief Medical Officer,
Gillette Children's Specialty Healthcare, to Mr. Guthrie and
Ms. Eshoo...................................................... 176
Letter of June 9, 2023, from AIDS Action Baltimore, et al., to
Mr. Burgess, et al............................................. 178
Study, ``A Surgical Simulation Module on Pediatric Femoral
Osteotomies for Orthopaedic Surgery Residents,'' by Zachary A.
Quanbeck, M.D., et al., Journal of the Pediatric Orthopaedic
Society of North America, Volume 4, Number 51, August 2022..... 182
Letter of June 14, 2023, from Mary R. Grealy, President,
Healthcare Leadership Council, to Mr. Guthrie and Ms. Eshoo.... 194
Statement of the Children's Hospital Association, June 14, 2023.. 196
Statement of Hon. Bill Pascrell, Jr., a Representative in
Congress from the State of New Jersey, June 14, 2023........... 198
Statement of interACT by Erika Lorshbough, Executive Director,
June 14, 2023.................................................. 200
Statement of Hon. Jennifer Wexton, a Representative in Congress
from the Commonwealth of Virginia, June 14, 2023............... 202
Letter of June 8, 2023, from George R. Shepley, President, and
Raymond A. Cohlmia, Executive Director, American Dental
Association, to Mr. Guthrie and Ms. Eshoo...................... 204
----------
\2\ Text of the legislation has been retained in committee files and is
available at https://docs.house.gov/Committee/Calendar/
ByEvent.aspx?EventID=116121.
\3\ The research paper has been retained in committee files and is
available at https://docs.house.gov/Committee/Calendar/
ByEvent.aspx?EventID=116121.
EXAMINING PROPOSALS THAT PROVIDE ACCESS TO CARE FOR PATIENTS AND
SUPPORT RESEARCH FOR RARE DISEASES
----------
WEDNESDAY, JUNE 14, 2023
House of Representatives,
Subcommittee on Health,
Committee on Energy and Commerce,
Washington, DC.
The subcommittee met, pursuant to call, at 10:32 a.m., in
room 2322 Rayburn House Office Building, Hon. Brett Guthrie
(chairman of the subcommittee) presiding.
Members present: Representatives Guthrie, Burgess, Latta,
Griffith, Bilirakis, Johnson, Bucshon, Hudson, Carter, Dunn,
Pence, Crenshaw, Joyce, Harshbarger, Miller-Meeks, Obernolte,
Rodgers (ex officio), Eshoo (subcommittee ranking member),
Sarbanes, Cardenas, Ruiz, Dingell, Kuster, Kelly, Barragan,
Craig, Schrier, Trahan, and Pallone (ex officio).
Also present: Representatives Schakowsky and Tonko.
Staff present: Kristen Ashford, Fellow, Health; Jolie
Brochin, Clerk, Health; Sarah Burke, Deputy Staff Director;
Kristin Flukey, Professional Staff Member, Health; Grace
Graham, Chief Counsel, Health; Nate Hodson, Staff Director;
Tara Hupman, Chief Counsel; Emily King, Member Services
Director; Molly Lolli, Counsel, Health; Karli Plucker, Director
of Operations (shared staff); Michael Taggart, Policy Director;
Lydia Abma, Minority Policy Analyst; Jacquelyn Bolen, Minority
Health Counsel; Waverly Gordon, Minority Deputy Staff Director
and General Counsel; Tiffany Guarascio, Minority Staff
Director; Mackenzie Kuhl, Minority Digital Manager; Una Lee,
Minority Chief Health Counsel; and Tristen Tellman, Minority
Health Fellow.
Mr. Guthrie. The subcommittee will come to order, and I
recognize myself for 5 minutes for an opening statement.
OPENING STATEMENT OF HON. BRETT GUTHRIE, A REPRESENTATIVE IN
CONGRESS FROM THE COMMONWEALTH OF KENTUCKY
Today we are here to discuss legislation about access to
care and improve health outcomes for Americans. We will
consider bills to help support innovation for therapies and
lifesaving cures for rare diseases which affect more than 30
million Americans. That is why we are considering H.R. 3391,
the Gabriella Miller Kids First Research Act 2.0, which would
reauthorize the National Institutes of Health Gabriella Miller
Kids First Pediatric Research Program.
We are also considering H.R. 3226, the PREEMIE
Reauthorization led by Ranking Member Eshoo and Representative
Miller-Meeks, Kelly, Kiggans, Blunt Rochester, and Burgess. We
are also--have more work to do to protect the long-term health
and well-being of expecting and new moms. We will consider to
build off this work the subcommittee has done over the past
several years to address maternal mortality.
H.R. 3838, the Preventing Maternal Deaths Reauthorization
Act, will continue the work done by the CDC and the Health
Resources and Service Administration, HRSA, to provide access
to resources for women experiencing risky pregnancies and
develop best practices to treat at-risk moms.
We are also considering H.R. 3821, the Firefighter Cancer
Registry Reauthorization Act. Our first responders experience
adverse health outcomes often resulting from selfless and brave
work they do to keep us and our loved ones safe. We are also
considering legislation to advance our knowledge of rare
diseases and promote access to therapies to treat rare diseases
such as sickle cell and Parkinson's disease.
As I step forward to address the issues today, we are
examining H.R. 384--3884, the Sickle Cell Disease and Other
Heritable Blood Disorders Research, Surveillance, Prevention,
and Treatment Act, and H.R. 2365, the National Plan to End
Parkinson's Act. I would like to thank Representatives Burgess
and Bilirakis for their leadership on these bills. And,
fortunately, as we are seek--as we have these breakthroughs, we
absolutely need to make sure that people have access to them,
and so we have our--that we had in the hearing last week, the
MVP bill that hopefully we can all come together to make sure
that the least of us have access to these lifesaving therapies
through the Medicaid Program.
And last, we are considering H.R. 3887, the Children's
Hospital GME Support Reauthorization Act of 2023. This program
provides funding the children's hospitals to help train
resident physician and dentists. It is critical for us to
reauthorize the program before the end of the fiscal year with
the necessary policy changes to keep kids safe from
experimental procedures.
In closing, I am proud of these bipartisan bills before us
that will approve access to care and drive innovation. Patients
and their families will be better off because of the work we
are doing today.
[The prepared statement of Mr. Guthrie follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Mr. Guthrie. And I will yield my remaining time to Dr.
Burgess.
Mr. Burgess. And I thank the Chair for the recognition.
So I am--it is so important that we are considering the
reauthorization of the PREEMIE Act introduced by my good
friends Anna Eshoo and Mary Miller-Meeks along with several
other Members. The PREEMIE Act would reauthorize programs that
expand research, education, and intervention activities aimed
at reducing premature births and treating the complications of
prematurity.
You know, we are just a few weeks away from the 60th
anniversary of the birth of the last child in the White House.
Patrick Kennedy was born August 7, 1963. Unfortunately, he did
not live too long because of complications of prematurity. And
indeed, his father, the President of the United States, tried
to enlist help from all sectors in the medical community in
order to save his son, but he was unsuccessful.
Writing in his great book, William Manchaster, in detailing
the life and death of President Kennedy, he talked about that
trip to Dallas. The day before the trip to Dallas, the
President was in San Antonio. In San Antonio, he was shown an
experiment that was going on regarding high-altitude
physiology. There were four men in a container, and they were
being simulated 30,000 feet, and they were being given high
oxygen.
The President pulled the investigator aside, and according
to Mr. Manchester's book, he drew Dr. Welch aside. He had one
more inquiry. ``Apart from space research, there must be other
medical implications here. Do you think your work might improve
oxygen chambers for, say, premature babies?'' Clearly, his
experience was very much on his mind that day.
Very personal to me because, 13 years later in August of
1976, my daughter was born a few weeks early and suffered from
the same complications, idiopathic infantile respiratory
distress syndrome, hyaline membrane disease, and because of the
work that had occurred over those intervening 13 years, the
science in neonatology, the specialty of neonatology had come
into being and neonatal intensive care units had now occurred.
So because of those efforts, my daughter 13 years later: short
stay in the hospital, take your medicines, do your treatments,
and you live a normal, healthy life.
That is the kind of work we are talking about today. That
is the type of work we are reauthorizing. I thank my friends
for introducing it. This is important work as we go forward.
[The prepared statement of Mr. Burgess follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Mr. Burgess. I will yield back.
Mr. Guthrie. Thank you. Thank you for your story.
The gentleman yields back, and I will yield back the time,
and I now recognize the gentlelady from California,
Representative Eshoo, for 5 minutes for an opening statement.
OPENING STATEMENT OF HON. ANNA G. ESHOO, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF CALIFORNIA
Ms. Eshoo. Thank you, Mr. Chairman, and good morning,
colleagues, and thank you to this sterling full table of
witnesses that we have with us today.
Today we are considering eight proposals that increase
access to care and reauthorize critical public health programs
and one proposal that does exactly the opposite. I am pleased
that my legislation, H.R. 3226, the PREEMIE Reauthorization
Act, is included in the hearing. And I thank my coleads,
Representatives Miller-Meeks, Kelly, Burgess, Blunt Rochester,
and Kiggans, for their work on this important effort.
In 2005, I introduced the original PREEMIE Act with former
chairman of our full committee, Fred Upton, which was the first
and remains the only law to focus solely on the prevention of
preterm births. We need a swift reauthorization to ensure the
successful programs created by this law can continue. 3226 will
also improve future policy by studying the current gaps in our
healthcare system that have led to the recent surge in preterm
births and how we can address them.
Our hearing will also consider critical bipartisan bills
such as the Preventing Maternal Deaths Reauthorization Act, the
National Plan to End Parkinson's Disease, and the Firefighter
Cancer Registry Reauthorization Act. I see Kevin nodding there.
But we are also considering a proposal that will damage the
Children's Hospital's Graduate Medical Education Program
irreparably by making hospitals choose between providing the
standard care for children experiencing gender dysphoria or
losing funding that keeps them afloat. There should not be a
choice here. It should not be one or the other.
For nearly 25 years, the CHGME Program has trained half of
general pediatricians and a majority of pediatric specialists.
In California, CHGME Program funds are used by seven children's
hospitals to train over 906 full-time pediatric residents
annually. This is an extraordinary record. It is an
extraordinary record, something that we are proud of on both
sides of the aisle because it has had the full support of
Members of both sides of the aisle.
And that is why it is difficult for me to comprehend why my
Republican colleagues are subjecting the children's hospitals
to a manufactured culture war that puts politics in between
parents, children, and their pediatricians. This just shouldn't
be here. It just shouldn't be here. Specifically, the bill
prohibits 19 specific procedures and any type of hormone
therapy that could be perceived as gender affirming for trans
youth.
This proposal threatens precious lives. It is not just a
bunch of words on a piece of paper. As one pediatric
endocrinologist said, ``Every time politics and medicine
commingle, people die.'' We are already seeing higher rates of
maternal and infant death because of abortion restrictions that
paralyze providers in an emergency. Now Republicans are
attempting to ban 19 more procedures and treatments that should
be a private--a private--decision between patients, their
families, and their doctors. This proposal also worsens the
mental health crisis that trans children are facing.
This is really sad, and if I had a magic wand, I would just
wish this away. But it is something that is before the
committee today.
I want to close on this with this quote. I was watching the
news one night and there was a Nebraska lawmaker--an
independent, a woman, a mother--and this is what she said: ``I
am asking you to love your family more than you hate mine.'' I
hope that this issue will somehow not make it here. This
doesn't belong here. We file--follow science. We have worked on
a bipartisan basis to build and build and build across our
healthcare system. So much of the decision making is private.
That is where it belongs.
So thank you to our panel of experts that are here today.
[The prepared statement of Ms. Eshoo follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Ms. Eshoo. And I yield back.
Mr. Guthrie. The gentlelady yields back, and the Chair now
recognizes the Chair of the full committee, Chair Rodgers, for
5 minutes for an opening statement.
OPENING STATEMENT OF HON. CATHY McMORRIS RODGERS, A
REPRESENTATIVE IN CONGRESS FROM THE STATE OF WASHINGTON
Mrs. Rodgers. Today's hearing looks at key programs that
aim to improve access to care and support research for rare
diseases. This includes solutions to help save the lives of
mothers and babies, improve our understanding of blood
disorders, coordinate Federal efforts related to Parkinson's
disease, and ensure we are appropriately monitoring instances
of cancer in firefighters so that we can get these heroes
better treatments and care. I look forward to hearing from our
witnesses about the effectiveness of these programs.
As part of our work to help mothers and babies at every
stage of life, we are continuing our work to reauthorize the
PREEMIE and Preventing Maternal Deaths Program. Especially for
first-time moms, I think about the joy and also the
uncertainty, the questions, and all that comes with being
pregnant. Across the country there is a need for stable and
consistent resources and education around maternal health.
That is why I was pleased to see the Preventing Maternal
Deaths Reauthorization included a requirement for CDC and HRSA
to share best practices to hospitals and other healthcare
entities to ensure we are doing everything we can for moms,
babies, and families to thrive.
I hear often from constituents not knowing where to turn
when dealing with postpartum depression in rural areas. HRSA
has a national maternal mental health hotline, but getting best
practices to doctors on how to best help women will hopefully
lead to improvements in maternal mental health.
We are also considering the reauthorization of the
Children's Hospital Graduate Medical Education Program. In
nearly 60 hospitals across the country, this program helps
train our next generation of pediatricians. As we discuss other
solutions today like the Gabriella Miller Kids First Research
Act, I imagine moms and dads who hear the diagnosis no parent
wants to hear from a doctor: ``Your child has cancer.'' And
then for the love of their child, the parents pour themselves
into making sure that their child will have the best chance to
one day achieve their hopes and dreams.
From our work on this committee, we know all families have
experienced this. That is why we must authorize the Children's
Hospital Program, so America's children are cared for by the
best doctors in the world, doctors who we trust to practice
with the strongest medicine, data, and science so our kids live
full, happy, and healthy lives.
We are not shying away from the concerns that children are
being rushed to experimental medical interventions that could
include puberty blockers, hormone therapies, and surgeries that
cause irreversible damage. Dr. Miriam Grossman is here today to
share the data and why other countries are stepping back from
these interventions for children because of the risk, like
permanent infertility, outweigh the benefits. Our children's
hospitals and medical institutions should also be urging
caution and being honest about where the evidence is lacking.
Many times on this committee we have come together to
protect the young generation. I have had many conversations
with my colleagues about our concern for teenage girls in
particular who are facing more stress, anxiety, and pressure
than ever before. For them and children in crisis, we have
taken historic action on mental healthcare reforms. We are
leading right now to stop Big Tech's algorithms from
manipulating children and preying on their vulnerabilities. And
this work must continue, and we need to do everything we can to
stand up and protect children.
That is our goal today. Let's send a message to the young
generation that they are loved as they are. And let's make sure
that we are getting the best healthcare possible. They deserve
nothing less.
To close, I want to thank my colleagues who are leading on
solutions we are discussing. Thank you to our witnesses for
your time and providing your expertise this morning. We are
grateful on this committee and, you know, this committee is
about doing the hard work, plowing the hard ground necessary to
legislate and to improve the lives of those that we serve.
I look forward to the discussion.
[The prepared statement of Mrs. Rodgers follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Mrs. Rodgers. And I yield back.
Mr. Guthrie. The Chair yields back. The Chair now
recognizes the ranking member from New Jersey, the gentleman
from New Jersey, Rep. Pallone, for 5 minutes for an opening
statement.
OPENING STATEMENT OF HON. FRANK PALLONE, Jr., A REPRESENTATIVE
IN CONGRESS FROM THE STATE OF NEW JERSEY
Mr. Pallone. Thank you, Mr. Chairman. Today could have been
a bipartisan hearing, but once again Republicans are playing
political games with the healthcare of Americans, and I am
deeply disappointed with the legislation that Republicans are
bringing up for consideration today to reauthorize the
Children's Hospital Graduate Medical Education Program. This
unnecessary and discriminatory bill is going to dominate this
hearing, which is unfortunate since there are bipartisan public
health policies that we should also be discussing here today.
The CHGME Program is a longstanding effort to support the
training of pediatricians and ensure that children across the
country have proper access to care. And this is a popular
program. Since its inception, it has consistently received
strong bipartisan support. In fact, reauthorization of CHGME
has always been done in a bipartisan manner.
Today we should be considering legislation introduced by my
colleague, Representative Schrier, that is bipartisan
reauthorization of this important program. But instead,
Republicans have chosen to notice a partisan bill that includes
language to ban medically necessary care for transgender youth.
Now, the Republican bill goes against decades of scientific
research and evidence that has established clear standards of
care. Care that is effective and essential to the health and
well-being of transgender youth. Care that is supported by the
American Academy of Pediatrics, the American Medical
Association, and every other leading medical association.
Banning evidence-based care is an affront to science, and it is
dangerous.
So let me be clear about what is happening here.
Republicans want to prescribe in excruciating detail in Federal
legislation which medical treatments and care are acceptable to
provide to young people. They are trying to overrule doctors,
patients, and their parents.
We know that transgender youth are already vulnerable to
mental health challenges. Nearly one in five transgender and
nonbinary youth have attempted suicide, and nearly half have
seriously considered suicide in the past year. This is
staggering, and Republican attempts to deny necessary medical
care only puts them at greater risk. We know that providing
care decreases suicide risk. We should be supporting and
affirming transgender young people for who they are.
This Republican ban also restricts options and disregards
parental rights. They are telling parents that Republican
politicians know better than they do what is best for their
child. And this is the height of hypocrisy from a group that
supposedly believes in limited government.
Not only is this ban an attack on transgender youth and
their parents, but it is also an attack on doctors and other
healthcare providers. It would prohibit any CHGME funding if a
hospital or training program performs this important care. This
would cripple the funding mechanism that trains over half of
all pediatricians in the United States. Children's hospitals
would be forced to make a choice between providing medically
necessary care for their patients or foregoing Federal funding
dedicated to the training of their residents. By attacking
providers and their training, Republicans are trying to
dismantle medical education research and care for all children
and adolescents.
So it is quite simple. Republicans should stay out of the
doctor's office. That is what I recommend. Stay out of the
doctor's office.
[The prepared statement of Mr. Pallone follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Mr. Pallone. And with that, Mr. Chairman, I yield back
Mr. Guthrie. The gentleman yields back. That concludes
opening statements.
We will now move to witnesses' statements, and I will just
let you know, as you have--some of you have testified here
before. You have 5 minutes. There will be a green light in
front of you, you will see that. It will turn yellow within a
minute, and so that is time to start wrapping up if you haven't
moved forward--if you haven't at the time. And then when it
turns red, the time is expired.
So I will begin by introducing all of our witnesses, and I
will call you on one by one to give your opening statement.
Our witnesses today are Dr. Elizabeth--``Share-it''?
Dr. Cherot. ``Sher-oh.''
Mr. Guthrie. Cherot. Dr. Cherot, senior vice president and
chief medical officer for the March of Dimes; Dr. Alexis
Thompson, chief of the Division of Hematology and Elias
Schwartz Endowed Chair in Hematology at the Children's Hospital
of Philadelphia and professor of pediatrics at the University
of Pennsylvania Perelman School of Medicine; Dr. Meredithe
McNamara, assistant professor at the Yale School of Medicine;
Dr. Miriam Grossman, child, adolescent, and adult psychiatrist;
Mr. George Monahan--Manahan----
Mr. Manahan. Manahan.
Mr. Guthrie. Manahan, child, adolescent, and adult--excuse
me. Parkinson's advocate and patient. And Mr. Kevin O'Connor,
assistant to the general president for government affairs and
political action for the National Association of Fire Fighters.
Dr. Cherot, you are recognized for 5 minutes for your
opening statement.
STATEMENTS OF ELIZABETH CHEROT, M.D., SENIOR VICE PRESIDENT AND
CHIEF MEDICAL AND HEALTH OFFICER, MARCH OF DIMES; ALEXIS
THOMPSON, M.D., CHIEF OF DIVISION OF HEMATOLOGY, ELIAS
SCHWARTZ, M.D., ENDOWED CHAIR IN HEMATOLOGY, CHILDREN'S
HOSPITAL OF PHILADELPHIA; MEREDITHE McNAMARA, M.D., ASSISTANT
PROFESSOR, YALE SCHOOL OF MEDICINE; MIRIAM GROSSMAN, M.D.,
CHILD, ADOLESCENT, AND ADULT PSYCHIATRY; GEORGE MANAHAN,
PARKINSON'S ADVOCATE AND PATIENT; AND KEVIN O'CONNOR, ASSISTANT
TO THE GENERAL PRESIDENT FOR GOVERNMENT AFFAIRS AND POLITICAL
ACTION, INTERNATIONAL ASSOCIATION OF FIRE FIGHTERS
STATEMENT OF ELIZABETH CHEROT, M.D.
Dr. Cherot. Good morning, Chairman Guthrie, Ranking Member
Eshoo, members of the Health Subcommittee. My name is Dr.
Elizabeth Cherot. I am senior vice president and chief medical
and health officer at March of Dimes, the leading organization
fighting for the health of all moms and babies. Our work today
is more important than ever with the Nation in the midst of a
dire maternal and infant health crisis.
By improving the health of women before, during, and
between pregnancies, we can improve outcomes for them and their
infants. But we have many challenges. Recently, the CDC
released its 2021 Maternity Mortality Rates Report, which
showed an increase of nearly 89 percent in the maternal
mortality rate since 2018. At the same time, the number of
women who experienced pregnancy-related complications or severe
maternal morbidity is increasing at a troubling rate.
The state of infant health mirrors that of maternal health.
While the most recent preliminary 2022 CDC data on preterm
birth shows a 1 percent decline in preterm birth rates, 1 in 10
babies are still born too sick and too soon. This small
decrease, while promising, only highlights the need to redouble
our efforts.
What is more persistent, racial disparities exist. Black
and Native American women are 62 percent more likely to give
birth prematurely, and their babies have a mortality rate
double that of the white population. Let me share one of the
stories from my full testimony that exemplifies the experiences
faced by mothers who deliver their babies prematurely.
Katie Wilton of Phoenix, Arizona, began facing life-
threatening complications 22 weeks into her pregnancy when she
began hemorrhaging. During the next 8 weeks, she suffered two
more bleeding episodes, and at 29 weeks and 2 days, Katie found
herself in preterm labor. When she arrived at the hospital, she
was given treatment to slow her labor and prepare for Colette's
early arrival.
As Katie soon--was soon to learn, she was experiencing
chronic placental abruption, where the placenta prematurely
separates from the uterine wall. When Colette was born at
exactly 30 weeks gestation, she was diagnosed with severe
intrauterine growth restriction. She weighed only 3 pounds, 1
ounce and measured a mere 14 inches long.
During her 63-day stay in a neonatal intensive care unit,
Colette was given lifesaving medication. Among them was
surfactant therapy, a treatment to advance lung development
which was developed by the March-of-Dimes-funded research.
This story and hundreds of thousands of others each year
just like it highlights the need for one of--for us to do more.
To that end, March of Dimes supports the following legislation
being considered by the subcommittee today: H.R. 3226, the
PREEMIE Reauthorization Act of 2023, which represents the
Federal Government's commitment to preventing preterm birth and
its consequences.
This legislation specifically reauthorizes CDC's highly
successful Pregnancy Risk Assessment Monitoring System, or
PRAMS. PRAMS collects site-specific, population-based data in
50 jurisdictions tracking maternal attitudes and experiences
before, during, and shortly after pregnancy. The Act also
reauthorizes the Health Resources Services Administration's,
HRSA's, activities aimed at promoting healthy pregnancies and
preventing preterm birth, and it provides a new study by the
National Academies of Sciences, Engineering, and Medicine,
which will examine the societal costs, the impact of societal
factors, and gaps in public health programs related to preterm
birth.
March of Dimes also supports H.R. 3838, the Preventing
Maternal Deaths Reauthorization Act of 2023, which strengthens
and expands Federal support for the Maternal Mortality Review
Committees, MMRCs, established under the authorizing law
enacted in 2018. MMRCs play an invaluable role in identifying
maternal deaths, analyzing the factors that contributed to
maternal deaths, and translating the lessons learned into
policy.
They have relieved the cardiac--revealed that cardiac-
related issues are the leading cause of deaths for mothers and
that the majority of deaths do not occur during childbirth but
in days and weeks after. This legislation would continue to
disseminate best practices and help MMRCs promote the case
review process.
Thank you for focusing your attention on these two public
health crises. March of Dimes stands ready to work with you to
enact this critical legislation.
[The prepared statement of Dr. Cherot follows:]
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Mr. Guthrie. Thank you for your testimony. The Chair now
recognizes Dr. Thompson for 5 minutes for her opening
statement.
STATEMENT OF ALEXIS THOMPSON, M.D.
Dr. Thompson. Chairman Guthrie, Ranking Member Eshoo, and
the distinguished members of the committee, thank you for the
opportunity to participate in this hearing to discuss H.R.
3884, the Sickle Cell Disease and Other Heritable Blood
Disorders Research, Surveillance, Prevention, and Treatment Act
of 2023, and the importance of this reauthorization to Federal
efforts to improve the lives of the nearly 100,000 Americans
living with sickle cell disease.
This legislation is critical to support access to care for
patients with sickle cell and related disorders. With early
diagnosis, we have achieved--which is often achieved through
universal newborn screening in this country, effective
evidence-based interventions can be introduced that will save
lives and reduce suffering.
My name is Dr. Alexis Thompson. I am the chief of the
Division of Hematology and the Schwartz Endowed Chair in
Hematology at the Children's Hospital of Philadelphia and
professor of pediatrics at the University of Pennsylvania
Perelman School of Medicine. In these roles, I treat children
and adults with sickle cell disease, I educate future
clinicians for--about sickle cell disease and comprehensive
care, and I lead a research team engaged in innovations in
sickle cell and other blood disorders, such as gene therapy, as
potential cures.
I have also served as president of the American Society of
Hematology, which is the largest professional society serving
both clinicians and scientists who are working to conquer blood
disorders.
Since the initial authorization of the Sickle Cell Disease
Treatment Demonstration Program, HRSA has provided important
resources for education and training to care--to provide--
approve access of quality care for patients living with sickle
cell disease and also those with sickle cell trait. This
program addresses an important recommendation that comes from
the National Academy of Sciences, Education--Engineering, and
Medicine Report addressing sickle cell disease and strategic
plan and blueprint for action.
H.R. 3884 will authorize the sickle cell demonstration
programs through fiscal year 2028 and will allow the agency to
build upon its efforts and the investment that has been made
thus far. This program will increase the number of clinicians
who are knowledgeable about sickle cell disease care, improve
quality of care provided for individuals, improve care
coordination, and to disseminate best practices for the
coordination of services particularly during the critical
pediatric to adult transition. This particular program is
designed to be a regional approach and currently now covers the
entire United States.
One example of how this program is effectives is its use of
the Project ECHO model, which allows providers to have
increased confidence in treating sickle cell patients by being
able to interface with experts in sickle cell disease, many of
whom live--are located some geographic distance from their
practices. By establishing a regional sickle cell disease
infrastructure, the program partners with States to develop and
support comprehensive sickle cell care programs that deliver
care across the lifespan and implements telemedicine or
telehealth technologies in order to do so. It covers the entire
country, and it utilizes a regional hub-and-spoke model, and
this has been particularly successful in the current funding
cycle, particularly when individual providers are some distance
from academic medical centers.
I also urge--in addition to H.R. 3884, I urge the committee
to consider how to improve the program, in particular providing
more resources for measurement or metrics. We know that
measurement is critical to understand the--and to quantify
increases in certain sickle cell complications, which frankly
are preventable with comprehensive care, and in addition will
allow us to expand and to identify unaffiliated patients,
patients who truly are receiving inadequate and, to the best of
our knowledge in some cases, no care.
We would also encourage Congress to invest further in the
CDC's Sickle Cell Disease Data Collection Program, which
complements the HRSA effort by utilizing its strengths and
surveillance to be able to provide necessary information
metrics to help us to understand where sickle cell patients
live, their current quality of life, and how we can continue to
intervene. There are currently only 11 States who are currently
participating in this program. It only represents about 35
percent of sickle cell patients. We think that there also needs
to be continued congressional support for this vital program.
We also--would also encourage the committee to consider
supporting H.R. 1672, the Sickle Cell Disease Comprehensive
Care Act, which would direct the Centers for Medicare &
Medicaid Services to provide funds to create demonstration
programs to look at access to comprehensive care and high-
quality outpatient care for individuals who are enrolled in
Medicaid. We believe that these are key Federal investments for
improving the health of individuals with sickle cell.
The sickle cell community is deeply appreciative of this
committee and the Congress for their ongoing commitment to
address sickle cell through these programs. Again, I urge this
committee to act now and to reauthorize H.R. 3884. Thank you
for the opportunity to testify before you.
[The prepared statement of Dr. Thompson follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Mr. Guthrie. Thank you for your testimony. The Chair now
recognizes Dr. McNamara for 5 minutes for your opening
statement.
STATEMENT OF MEREDITHE McNAMARA, M.D.
Dr. McNamara. Thank you, Health Committee--excuse me. Thank
you, Health Subcommittee Chair Guthrie, Ranking Member Eshoo,
and members of the subcommittee. I am a board-certified
pediatrician and a specialist in adolescent and young adult
health. I have spent 12 years in medical training, in direct
patient care, and in clinical research. I am honored to serve
the diverse needs of young adults age 12 to 25. And as an
assistant professor at the Yale School of Medicine, I teach
medical residents, students, and fellows.
I am also the cofounder of the Integrity Project for Child
and Adolescent Health, which seeks to infuse health policy
debate with scientific evidence. My testimony today reflects my
academic and clinical work as well as medical consensus and not
the views of my employer.
The amendment to the Public Service Act before you proposes
to defund pediatrics training programs throughout our country
if these institutions provide the standard of care to
transgender youth. I am honored to speak here today on behalf
of esteemed colleagues throughout the Nation who provide this
best-practice medical care for children and youth, including
trans youth, and their families. As a physician with a
commitment to patient care, I am honored to be able to do more
for them here than I can do in the office.
The past few years mark a rapidly shifting and hostile
political climate towards medical care for transgender people,
with a harsh focus on youth. Care that should be a private
matter for families, patients, and providers is now being
directed by legislators based on unsupported fears and
misinformation.
I understand that this care may be confusing to those who
are not medical providers with expertise in treating this
population or those who do not have a personal connection to a
transgender person. That is why it is critical that this body
base its decisions on facts and accurate information. Most of
us here would not disagree with that.
From my position as a medical practitioner and a member of
a large community of experts in this care, I see five
categories of misinformation: denial of the medical condition
of gender dysphoria, false claims about standard practice,
false claims about the evidence that backs care, false claims
about the safety of treatments, and an attack on medical
authority. And I am here to ensure that you have the facts to
address this misinformation.
Gender dysphoria, the longstanding and significant distress
that many transgender people have from the incongruence between
their gender identity and the sex they have at birth, is real.
It is a recognized and serious medical condition. Transgender
people of all ages exist. Their healthcare is based on
established standards of care and clinical practice guidelines,
which are themselves based on substantial medical research and
evidence as well as decades of clinical practice. Based on
these standards, youth and parents receive informed counseling
about the risks and the benefits of specific treatments, and
every major medical organization has endorsed this care.
As a pediatrician, I must also address the proposed
amendment. Pediatrics residencies and fellowships are the
backbone of healthcare for children in this country. During the
tripledemic of influenza, COVID-19, and respiratory syncytial
virus, also called RSV, it was pediatrics residents and fellows
who worked every hour of every day to help children survive
life-threatening respiratory diseases.
They help NICU babies get to kindergarten. They keep
outpatient clinics flowing so that kids get routine well care.
Residents and fellows form a pipeline of research and
innovation that makes this country a global leader in every
area of pediatric medical science.
This bill would require children's hospitals to deny kids
healthcare to maintain funding. As a practical matter, there is
no way to banish all transgender youth from children's
hospitals, nor is there a way for pediatricians to simply
refuse to provide these youth with medically necessary care.
All kids suffer when their legislators remove parents' rights
and prevent pediatricians from providing the standard of care.
And I have to tell you, American pediatricians will not accept
being told that they have to leave even a single child behind.
There is no room for clinic--there is no room in our clinics
for the Government.
I had a conversation with a trans teen recently. Gender
dysphoria began early in puberty and worsened as puberty
progressed. The parents sought and received help. This family
asked me to tell members of this committee that gender-
affirming care gave their kid confidence. This teen stands
tall, debates international law in model UN sessions, recently
in this city, our Capitol, to compete in nationals. This care
was lifesaving and life-affirming. College options are limited
to States that protect trans healthcare, but even still, this
teen is excited for the future that lies ahead.
That is what every kid in this country deserves. Please
don't make it harder for us pediatricians to get them there.
[The prepared statement of Dr. McNamara follows:]
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Mr. Guthrie. Thank you. Thank you for your testimony. The
Chair now recognizes Dr. Grossman for 5 minutes for your
opening statement.
STATEMENT OF MIRIAM GROSSMAN, M.D.
Dr. Grossman. Thank you, Chairman Guthrie and members of
the subcommittee. Thank you for the opportunity to address you.
My name is Miriam Grossman. I am a board-certified child,
adolescent, and adult psychiatrist, author, and senior fellow
at Do No Harm. I have been taking care of patients for 45
years.
I am going to use my time to respond to Dr. McNamara.
First, I am struck by her use of the phrase ``sex assigned at
birth.'' Sex is not assigned at birth. Sex is established at
conception and it is recognized at birth, if not earlier. Dr.
McNamara claims that her views are science-based, but to claim
that sex is assigned at birth is without any scientific basis
whatsoever. Its language misleads people, especially children,
into thinking that male and female are arbitrary designations
and can change. That is simply not true.
Dr. McNamara claims that social and medical interventions
are the only evidence-based treatment and that scientific
evidence shows it is lifesaving. Without it, she is warning us
kids will commit suicide. Well, a growing number of countries
have effectively banned the care to which she is referring,
and, thank God, there has been no wave of suicides or other
mental health catastrophes.
Three years ago, Finland placed strict limitations on
medical interventions for minors. Sweden did the same thing
after a 14-year-old girl was found to have osteoporosis and
spinal fractures from puberty blockers. An investigation
concluded, ``the risks of anti-puberty and hormone treatment
for those under 18 currently outweigh the possible benefits.''
The UK conducted a review and called the evidence very low.
They have also placed severe restrictions on the care that Dr.
McNamara calls lifesaving. Norway also analyzed the data and
has made similar changes in policy.
The National Academy of Medicine in France warned, ``Great
medical caution must be taken in children and adolescents given
the vulnerability of this population and the many undesirable,
even serious, complications the therapies cause.'' Doctors in
New Zealand and Australia have published similar statements.
Is Dr. McNamara suggesting that all these countries are
rejecting evidence-based treatment and placing their kids at
risk of suicide? Regarding that point of view, Finland's gender
expert, Dr. Ritta Kaltiala, said, ``It's purposeful
disinformation, the spreading of which is irresponsible.''
All seven countries--and Florida too, of course--concluded
that kids don't need their development interrupted. The girls
don't need their periods stopped and their voices lowered, and
the boys don't need to grow breasts. What they need is
psychotherapy.
I have other objections to Dr. McNamara's testimony. She
insists that her position--only hers--represents standard
medical care. What she doesn't want you to know is that there
is no standard. There is a debate. There is a fierce debate,
and on the side opposite her stands such prominent figures as
Stephen Levine, Kenneth Zuker, Paul McHugh, and James Cantor,
among others.
These doctors are giants in the field. They have been
treating transgender patients and gathering data and publishing
papers about them, and I mean no disrespect here, but since
before Dr. McNamara was born.
The point is that those veteran clinicians and others who
have wisdom and experience are ignored because they disagree
with the current narrative. They are against medical
interventions for the same reason those seven countries are.
There is no evidence of long-term benefit, but there is
evidence of harm.
I will end by quoting Jamie Reed, the courageous
whistleblower from the Children's Gender Clinic in St. Louis. I
believe that that hospital receives the medical education
funding that we are discussing today. She said that doctors at
that clinic said, ``We are building the plane while we are
flying it.'' We are building the plane while we are flying it.
That is how they described the treatment at their gender
clinic. Our precious tax dollars should not support such a
perilous experiment. Thank you.
[The prepared statement of Dr. Grossman follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Mr. Guthrie. Thank you for your testimony. The Chair now
recognizes Mr. Manahan for 5 minutes for your opening
statement.
STATEMENT OF GEORGE MANAHAN
Mr. Manahan. Good morning, Chairman Guthrie, Ranking Member
Eshoo, and members of the Subcommittee on Health. My name is
George Manahan, and I am testifying today as a patient and
advocate in support of H.R. 2365, or better known as the
National Plan to End Parkinson's Act.
I am not a policy expert like most of these people up here.
I am a small business owner from West Virginia just trying to
navigate the world of Parkinson's while providing jobs to 12
full-time employees.
Mr. Chairman, can I ask for a show of hands? I am
interested to know how many people on the committee know
someone personally with Parkinson's disease.
Wow.
I ask that question because, when I was diagnosed 13 years
ago at age 49, I didn't know anyone with Parkinson's. It is
great to see there is a recognition of the disease by this
committee. For those of you who don't know someone with
Parkinson's disease, I humbly say, you do now.
Everyone's Parkinson's journey is different. Mine started
with tightening of muscles in my right arm and leg followed
with tremors. The tremors became so bad that I would hide my
shaking arm in a pocket, the couch cushions, or anything that
would keep my disease from becoming public, and to relieve the
pain that I experienced.
I was persuaded to try brain surgery known as deep brain
stimulation. The results were incredible. My tremors were
mostly gone, as you can see. I remember crying with my wife,
Susan, in a doctor's parking lot after my Parkinson's
specialist turned on my transmitter and watched my tremors fade
away. But DBS is not a cure. It is an effective therapy for
someone with movement issues.
Over the years, my brain has slowed significantly, making
it difficult for me to manage more than one task at a time. I'm
sorry. They call it executive function, but I call it forced
retirement. Some nights I act out in my dreams, another
byproduct of my Parkinson's, and I feel I will someday injure
my wife or myself. My speech has been impacted, and I am having
some difficulty swallowing. One of the leading causes of death
is choking on food.
One of these symptoms by themselves wouldn't be a problem,
but Parkinson's has a way of piling on. When I was diagnosed, I
craved to find other people who had this disease like me, but
in my hometown there was--they were nowhere to be found. I
found out later that they were home suffering alone.
So we started a 5K walk and run that blossomed into support
groups and free exercise classes and caregiver forums and more.
Soon we had over 200 people or more showing up to raise money,
advocate, and learn from each other.
A 2022 report on the economic burden on Parkinson's
calculates the cost of PD at $52 billion. Half of that money is
paid by the Federal Government for Medicare. The other half is
paid by patients and families. I don't believe that those
figures calculate the tremendous loss of income and jobs that
families experience when someone has to stay home to care for
their loved ones. I often worry what will be the burden just
ahead for my wife.
I am here today to speak in support of H.R. 2365, which is
an important first step to relieve the economic and emotional
burden of Parkinson's disease. The national plan is bipartisan,
no-cost legislation that is being championed by Representative
Bilirakis--thank you--and Representative Tonko here in the
House and my Senator, Shelley Moore Capito, in the Senate. It
is patterned after highly successful legislation that passed 10
years ago for Alzheimer's disease.
What I particularly like about this bill is that patients,
caregivers, healthcare providers, people who are on the
frontline of the disease, will have a seat at the table. The
legislation will bring together the public and private sector
to develop a national plan. The title of the bill may seem a
little ambitious. You might ask, is it possible to end
Parkinson's disease? I believe it is. Through research, all
things are possible.
We now have a biomarker that can detect Parkinson's disease
with a high degree of accuracy. I imagine we will soon be able
to detect Parkinson's disease long before we see the first
symptoms. This will open up research and treatment
opportunities that haven't previously been available.
Mr. Chairman, Parkinson's patients throughout the country
support H.R. 2365. Let's take this first step together to cure
the disease.
Thank you, sir.
[The prepared statement of Mr. Manahan follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Mr. Guthrie. Thank you. Thank you for your testimony.
Mr. O'Connor, you are now recognized for 5 minutes for
opening statement.
STATEMENT OF KEVIN O'CONNOR
Mr. O'Connor. Good morning, full committee Chair Rodgers,
Chairman Guthrie, Ranking Member Eshoo, distinguished members
of the committee. I am Kevin O'Connor, and it is my honor to be
here representing the International Association of Fire
Fighters. There are 336,000 members who right now are on duty
in each of the Nation's 435 congressional districts.
My written testimony has been provided. Beyond the IAFF,
all major fire service organizations, the volunteers, the
chiefs, the Congressional Fire Service Institute, all support
the reauthorization of the firefighter cancer registry. The
reason is because occupational cancer is the number-one killer
of firefighters.
Mr. Chairman, close to your district, a 46-year-old
battalion chief, Johnnie Jacobs, in Georgetown lost a battle
with lung cancer. He was a nonsmoker and actually chaired the
department's wellness program. Georgetown has since instituted
a screening program, but it was too late for Chief Jacobs.
Ranking Member Eshoo, 41-year-old Captain Jose Martinez
from San Jose just passed from a rare soft-tissue cancer.
Members of the committee, please talk to your firefighters.
You will hear stories and anecdotes like this no matter where
you are from.
Before I traded in my bunker gear for a suit, I worked on
the busiest ladder company in Baltimore County and saw my fair
share of fires and hazmats and other incidents. As my career
progressed, I delved into the actual statistics on firefighter
mortality and the causes of line-of-duty deaths. I have seen
friends die from cancer. As the local president, I consoled
families and visited members in hospice. Then at age 52, I got
that dreaded call that I had cancer. Thankfully, I beat it and
am cancer-free.
Firefighting is a filthy and dangerous job in which members
are consistently exposed to toxins and other carcinogens. There
are persistent inhalation risks even while wearing a breathing
apparatus. On a wildfire, the exposure to our members is
nonending, lasting through the entire deployment of their
tours.
Last week, as you may have seen, there was a large truck
fire and bridge collapse along I-95 in Philadelphia. Those
responders to that incident were exposed for many hours to
billowing petroleum-based smoke along with the dust
particulates from the collapse. This happens daily. Plastics,
adhesives baked in flame retardants and other chemicals make
today's smoke composition more acrid and deadly.
Firefighters are also exposed to diesel exhaust at the
stations where they live 56 hours a week. They sleep directly
next to or above a garage. When an engine responds to a call,
they pull out, leaving a diesel cloud trapped in the engine
bay. In many stations, the bay area actually doubles as a rec
room or training center.
To add a little perspective, in 2020, the last year that
statistics are available, 36 million 911 responses were
recorded, and that doesn't include fire apparatus routinely
leaving the station for inspections, repairs, trainings, et
cetera. That is a lot of exposure.
We recently uncovered data showing their bunker or turnout
gear is laden with cancer-causing PFAS that absorbs through a
firefighter's skin. Simply put, our own gear is killing us.
That is unacceptable. Every firefighter needs at least one, and
preferably two, sets of PFAS-free gear for our own health and
safety. We get cancer earlier and die on average at rates 15
percent greater than the general population, and more than 150
percent above the average for really lethal cancers like
pancreatic, lung, kidney, testicular, breast, and cervical.
Those are the reasons why the World Health Organization
recently named firefighting as a Group 1 carcinogen. That is
their most deadly level. It is real, it is scientifically
proved: Firefighting is a cause of cancer.
The fire service does our best to police ourself. We are
supporting early screening processes like GRAIL's Galleri test
that can detect over 50 cancers through a simple blood draw or
the more traditional imaging scans. Early screening saves
lives. And I like to do a commercial for the Multi-Cancer Early
Detection Act. It is very important that this is passed so
these testing methodologies can be incorporated into Medicare
and insurance programs. They save lives.
Here is the bottom line: The--without medical data,
researchers and epidemiologists can't uncover trends and
specific profiles to solve this epidemic. We need to track
cancers in the fire service, and the firefighter cancer
registry is our best and perhaps the only chance to do so. It
took a few years to really get the registry operational. It
finally kicked off in April. Currently there are about 4,000
registrants.
Every single fire service organization is working with CDC
to educate and register our members. If the registry is not
authorized, we are back at square one. That can't happen. Stand
with firefighters and pass H.R. 3821.
I will conclude with this. From the time the registry was
enacted until the end of last year, the IAFF had 959 line-of-
duty deaths. Six hundred thirty of those deaths, or over two-
thirds, were attributable to occupational cancer. No more needs
to be said.
I thank you for the opportunity and am delighted to answer
any questions.
[The prepared statement of Mr. O'Connor follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Mr. Guthrie. Thank you for your testimony.
We are now going to move into Members' questions, and we
are going to try to stick to the 5 minutes, so please don't ask
a question with 2 seconds left in someone's time because we
want to give people a chance to answer the question of the
important subjects before us today.
So I will recognize myself for 5 minutes and begin asking
questions.
And to Dr. Thompson, I want to ask you questions. I have a
good friend whose son is living with sickle cell. What is
amazing, what happens for members of the committee, we have
people that come--people--we had some arguments on pharma
yesterday. Pharma, people think it is four or five big drug
companies. It is actually a lot of innovative people out there
trying to--small companies, a lot of them, and my good friend
to my left's district--who are trying to solve big problems.
And I remember Dr. Francis Collins said we can actually
come into the forefront, we are going to cure sickle cell. And
it is not just a chemical pill that people are going to be able
to take. These are procedures, processes, genetics. They are
individual medicine. And they are expensive.
And so the Chair--the ranking member and I have worked
together on value-based agreements within the Medicaid programs
so the people, the most unfortunate, will have access to these
cures.
Would you talk about value-based agreements and why it is
important to have--this is where State Medicaid directors can
negotiate with drug companies. Can you imagine having a State
government person negotiate with a drug company and not get--I
still can't believe we don't have 435 votes in the House for
this. But would you talk about why those are important to have
access?
Dr. Thompson. Certainly. And thank you for bringing this
to--attention to the committee.
Yes, I think that thinking about outcome-based payment
arrangements, which are currently allowed in Medicaid, can and
should be extended to some of these new treatment options. The
results from the early results when things, for instance like
gene therapy, are really incredibly exciting. And in the last 3
years, we have seen 2 new drugs approved--3 new drugs approved
for sickle cell disease, and we believe that there are more in
the pipeline, based on current clinical trials.
This is something that I think could be taken on through
the CMMI, the Centers for Medicare & Medicaid Innovations,
looking at improving access. And I do think that looking at
outcomes-based in terms of whether or not people have fewer
sickle cell complications, evidence that their sickling is now
gone, other parameters that demonstrate durable success with
some of these treatments----
Mr. Guthrie. Yes, I would like to ask you another question.
If I could move--just kind of move it just a little bit. Chair
Eshoo and I, working together again, sent a letter to the
Centers for Biological Evaluation and Research, a receiver at
FDA, and it was--they responded that the--about their meetings.
The only responses for Type B meetings almost 80 percent of the
time.
These are critical meetings when the FDA and regulators and
product sponsors as manufacturers work through the approval
process. FDA responded that 79 percent of these meetings for
complex cell and gene therapy are without in-person meetings.
Would you comment of the complexity of developing these
products and why it is important that we have--the challenges
of developing these and not having in-person meetings with FDA?
Dr. Thompson. I can't with any tremendous detail. I
certainly would point out, though, that it is remarkable how
much we have accomplished in part because of the requirements
during the pandemic that we have continued to have
conversations as--I am at an institution where we are also
among those who are developing some of these therapies, and
being able to have open communications with them, whether they
are in person or otherwise, today seems to be reasonably
effective, and much of it has been gained by our hybrid
meetings that have come out of the pandemic.
Mr. Guthrie. OK, thank you. Thank you for that.
So, Dr. Cherot, I have a cousin who is a neonatologist, and
every time we are together--I am not a healthcare person by
trade, so I have to pick his brain, and what is amazing is the
development over the last decade in neonatology and how young
these babies can live. The age of viability, if that is what
people want to discuss, is actually pushing back further. It is
certainly not at 39 or 40 weeks, it is at--you know, it is
amazing what is moving forward.
And so would you talk about to what extent the PREEMIE
Program has contributed to these outcomes? And what is
important for this hearing as gaps that you see and what we
need to do better as we reauthorize the PREEMIE Program?
Dr. Cherot. Thank you for your question. Discovery research
is vital to expanding the quality and volume of data that we--
that is needed to address the continuing knowledge gap. There
is no silver bullet in treatment. Preterm birth is complex.
Fifty percent of it is--has no ideology. There's others that we
have induced or had C-sections for babies to be delivered
because of maternal health conditions. And then there--of
course, there is that leakage of fluid and--amniotic fluid, and
that also contributes.
The financial costs of preterm birth to society, including
long-term costs and--to society is one of the gaps that
families in the NICUs, and post-discharge also, this would
hopefully help us. We would also look into social factors that
preterm birth rates need to be addressed. I would also say that
identifying gaps in State and Federal public health programs
that have caused increases in preterm birth as well as
practices that have led positive impacts.
Mr. Guthrie. Well, thank you. And I have only 4 seconds
left. To live to what I just said, I am going to yield back,
and I will recognize the ranking member for 5 minutes for
questions.
Ms. Eshoo. Thank you, Mr. Chairman. Thank you to all of the
witnesses.
Let me start with Dr. Cherot. Thank you for your
leadership. As I was listening to you, I thought, Is it really
18 years ago that we wrote this legislation? I am very proud of
it and everyone that was a part of it. Of course, we have
reauthorized more than once.
Briefly, because I have more than one question to ask of
witnesses, what do you think has been effective over the last
15 years, and what do you think some of the causes of the
recent surge are, and how does this reauthorization address
those concerns?
Dr. Cherot. So there are several factors that contributed
to the high rate of preterm birth. Inadequate prenatal care,
and preexisting maternal health conditions, like diabetes,
hypertension, obesity, all contribute. I would say that
addressing this in the future is that we are looking at
exciting, promising research. March of Dimes contributes to
that research, and we have prematurity research centers.
We--actually, if you think about it, we had enhancements in
diagnostic tests we never had before such as preeclampsia,
which is the number-one morbidity for black women in this
country. And those are type of the solutions that we are trying
to research, that this PREEMIE Act will help further.
Ms. Eshoo. Wonderful. OK. To Dr. McNamara, you just sat
through testimony that I believe is chock full of dangerous
misinformation and pseudoscientific ``facts,'' warped to fit, I
think, a really outdated narrative of the trans experience in
our healthcare system. We could spend a long time talking about
that, but I want to give you the opportunity for a minute to
respond.
I have spoken to pediatric endocrinologists in my district
who treat hormone disorders in children every day. Every day.
And as we all go about doing whatever we are doing, this is
taking place. This is taking place in our country. And it
includes, which I was not aware of, early cases of--cases of
early puberty in children as young as 2 years old. I had never
heard of that.
This causes, obviously, a lot of serious issues. One of the
treatments is providing GnRH analogue therapy, a banned medical
intervention under the legislation that is being considered
here today. And I--again, to have, you know, 2-year-olds, 6-
year-olds, youngsters subjected to this is--well, I think you
can hear it in my voice. I am deeply unsettled about this.
Do you want a like 30-second response----
Dr. McNamara. Thank you, Congresswoman.
Ms. Eshoo [continuing]. Since I ate up some of your time?
Dr. McNamara. Yes. So all five themes of the misinformation
that I have identified in my work are on display. I am a
coauthor of extensive rebuttals with science to all of them. It
is entered into my testimony, and those documents have been
used to successfully challenge bans on care for trans youth in
Texas, Florida, and Alabama.
The other testimony espouses two levels of harm: abolishing
evidence-based care and creating a vacuum. The forced
withdrawal of care is akin to experimentation. Dangerous,
discredited conversion practices that attempt to convince a
young person that they are not gay or not trans, we have moved
on from that. Most States have banned that care in this
country.
It is toxic for an adult to tell an adolescent that there
is something wrong with them. I am sure there are many parents
in the room, and you would never want your kid to go through
that. Suicidality is a debilitating way to endure adolescence.
A suicide attempt is a traumatic interruption in a young
person's life.
Let's be clear: Pediatricians know that lifesaving means
life-sustaining. When trans youth receive the standard of care,
they thrive. They develop talents, they discover their
strengths, and they get to be who they deserve to be.
Ms. Eshoo. Thank you.
Kevin, I wanted to know why CDC took almost 5 years to
implement the legislation and now we are reauthorizing it, but
I think you are going to have to maybe answer that question for
someone else, but at least I get it on the record.
Mr. Guthrie. OK.
Ms. Eshoo. Thanks for being here.
Mr. Guthrie. Yes, we will have the chance where we can do
it----
Ms. Eshoo. I yield back, Mr. Chairman.
Mr. Guthrie [continuing]. Moving forward. Thank you for
yielding back. The Chair now recognizes the Chair of the full
committee for 5 minutes for questions.
Mrs. Rodgers. Just to clarify, the bill does not ban
treatment for precocious puberty, which the ranking member just
alluded to.
So a recent report found that the number of clinics in the
United States focused on providing puberty blockers, hormone
therapies, and surgeries for gender-affirming care has grown
from just a few to more than a hundred as of February 2023. Dr.
Grossman, in your written testimony you mentioned how certain
European countries have decided to take a more cautious
approach and significantly limit the use of puberty blockers
and hormone therapies to treat gender-related conditions in
minors. Is the United States an outlier?
Dr. Grossman. Well, it certainly--yes, more and more
becoming so. I just want to take one moment because this is
really bothering me. Representative Eshoo, I am sorry if I am
mispronouncing your name.
Mrs. Rodgers. That is right.
Dr. Grossman. Representative, you are very confused about
something. When we--when----
Mr. Guthrie. I am sorry, just--[indiscernible] suspend.
Dr. Grossman. Yes. Representative, you--I would like to
clarify something for you.
Mrs. Rodgers. You can clarify it to me. Clarify it to me.
Dr. Grossman. Yes. Precocious puberty is a medical
condition. It is a condition in which the child had----
Mr. Guthrie. What's that--I am sorry, would you--could you
suspend the clock for a second?
Ms. Eshoo. She spoke to me directly, Mr. Chairman.
Voice. And she can't characterize how you----
Ms. Eshoo. You can't characterize me.
Mr. Guthrie. Yes. OK, you can't characterize the way that
she is--her question or what she has asked, so if you would
just respond to----
Dr. Grossman. OK, I am----
Mr. Guthrie [continuing]. The Chair who is asking the
question.
Mrs. Rodgers. Yes.
Dr. Grossman. OK.
Mr. Guthrie. Thank you.
Dr. Grossman. The point is that precocious puberty, which
we have treated with blockers for decades and is approved by
the FDA for that use, that is a medical disorder, that is a
disorder in which the child has abnormal hormone levels
circulating that causes their bodies to premature enter--
prematurely enter puberty. We do not want that to happen.
We are talking about an experimental use of these agents in
children that are completely healthy. They have no medical
disorder. So we are artificially blocking a biological process,
a natural process called puberty. Puberty is not a disorder. We
need to go through puberty in order to reach adulthood. Every
system of the body, the brain included, needs to go through
puberty to reach adulthood.
And what we are doing in gender-affirming care is stopping
that natural organic process and blocking it and then shortly
thereafter--in most cases, over 90 percent of cases--
administering the hormones of the opposite sex so that the
child will go through a synthetic puberty, not the organic
puberty----
Mrs. Rodgers. Thank you.
Dr. Grossman [continuing]. But a synthetic puberty. OK, I
am sorry.
Mrs. Rodgers. Thank you.
Dr. Grossman. You asked me about the European countries.
Mrs. Rodgers. I asked you if the United States was an
outlier.
Dr. Grossman. Absolutely.
Mrs. Rodgers. OK, thank you.
Dr. Grossman. The United States and Canada are out----
Mrs. Rodgers. And would you speak to what the data tells us
about the long-term impacts of these medical interventions?
Dr. Grossman. So that is the thing. You see, this, until
recently, was an extremely rare condition. It was so rare that
when I went to medical school decades ago, I never expected to
see one case in my life. That is how rare it was. And now that
is all I do.
So you see, in the past 10 years or so, specifically since
maybe 2015, there has been an explosion of cases, an absolute
tsunami of cases, and the question is why is that. And those
cases are very different than previous cases. This is a new
population. The old--the prior gender dysphoric cases that we
studied were mostly----
Mrs. Rodgers. Thank you.
Dr. Grossman [continuing]. Boys.
Mrs. Rodgers. OK. Yes, thank you. I wanted to get to girls
too, because I am--I had mentioned my concern about the mental
health crisis for young girls. And over your career, would you
speak to how patients experiencing gender dysphoria changed in
the number and characteristics, and also speak to the long-term
impacts for these medical interventions?
Dr. Grossman. OK. So what I was--wanted to say is that,
when we speak about long-term, we don't have the data yet
because these are just--this is a new population called ROGD,
rapid-onset gender dysphoria, and we are just studying them
now. It is a new demographic. Mostly girls but lots of boys as
well. My practice is 50 percent boys. These are kids who have a
lot of previous mental health conditions----
Mrs. Rodgers. OK, thank you, Dr. Grossman. Thank you. I am
going to have to cut it off there because I heard my colleagues
say that this should be a private decision between parents,
teachers, and doctor--or parents, children, and doctors, that
we should protect parent rights, and that Republicans are
putting politics between children, parents, and the doctor.
The truth is parents are being removed from their
children's doctor's offices and kids are being taken from their
parents and their homes. It is making it us versus them. That
is my fundamental concern.
I yield back.
Mr. Guthrie. Thank you. The Chair yields back. The Chair
now recognizes the ranking member of the full committee, Mr.
Pallone, for 5 minutes for questions.
Mr. Pallone. Thank you, Mr. Chairman.
I have to say I am deeply disappointed in the partisan
Children's Hospital GME legislation being considered today. It
prescribes in very minute detail the types of care that must be
prohibited in order to receive funding and tells our healthcare
providers, major medical associations, and patients that
Republican Members of Congress know better than them about what
should be considered standards of care within our medical
system. And that should scare us all, particularly when this
program is designed to train the next generation of
pediatricians and pediatric subspecialists.
So my questions are of Dr. McNamara. I know that
transgender people and those who advocate for the rights of
transgender people are currently facing fear, intimidation,
threats of violence. But I believe that we must speak out on
their behalf and support them, and I want to say thank you to
you today for doing so.
Now turning to my questions. If this bill were to become
law, what would the impact be on pediatric care?
Dr. McNamara. So I am very privileged to sit next to two
people who have shared details about the types of medical care
that benefit patients who I have cared for in my career, people
with sickle cell disease, premature babies. Many people here
might not know what goes into that type of care, but I do. And
it is not my specialty anymore. I have subspeciality training
in adolescent medicine.
But the experiences that I had in a NICU in the middle of
the night resuscitating preterm infants, counseling their
parents, working with my colleagues, offering advanced
treatments for sickle cell to children with crippling pain have
forever shaped my training. I am an excellent clinical
researcher because of my training as well. And I think that I
am not the only person. You know, I spoke to so many of my
colleagues about this testimony. Everyone expressed disbelief
and regret that it would escalate this far.
Everybody wants children to be healthy and safe, but their
care and what they require to be healthy and safe is expert. We
know what we are doing. We know how to do it really well. And
all that we ask is that we be allowed to do it without any sort
of legal interference.
Mr. Pallone. I appreciate that. I mean, what I am seeing
here and in so many different forums is Republicans--Republican
Congresspeople trying to or determined to substitute their
opinion for experts, experts in medical fields, experts in
agencies, and it is truly scary.
The legislation is not only an attack on transgender youth
and their families, but it is an attack on providers and the
training they receive. Can you speak to how this would impact
the training that pediatric residents receive? Briefly, because
I have one more question.
Dr. McNamara. Yes, of course. We are already seeing that
less people are looking to go into pediatrics because it has
been politicized and interfered with. There is a great deal of
moral injury that accompanies being told what you can and can't
do and needing to legally withhold care from people who need it
whose lives depend on it. So I would expect not only would it
cut off at the knees the vast majority of training for
pediatrics residents and fellows in this country, but it would
deter the future of pediatricians.
Mr. Pallone. So what--you are seeming to suggest that this
would have an impact on the pediatric workforce. Do you want to
comment on that?
Dr. McNamara. It would have a devastating impact on the
pediatric workforce. People would bring sick kids into
children's hospitals and there wouldn't be anyone there to take
care of them.
Mr. Pallone. Well, thank you.
You know, Mr. Chairman, I can't understand why the majority
has chosen to hijack this critical program to have an
ideological battle. I just don't understand it. This committee
has a long history of working together to solve important
healthcare challenges, and training our healthcare workforce
being one of the most important. It is just disappointing that
instead of considering Representative Schrier's bill to
reauthorize this program on a bipartisan basis as we have done
in the past that the Republican majority has instead decided to
jeopardize the reauthorization of the CHGME through this
harmful and inhumane policy, and I just don't understand it.
I urge my colleagues to strongly oppose this build--this
bill. And I yield back, Mr. Chairman.
Mr. Guthrie. Thank you. The ranking member yields back. The
Chair now recognizes Dr. Burgess for 5 minutes for questions.
Mr. Burgess. Thank you, Mr. Chairman.
Dr. Thompson, I have worked with Representative Davis for a
number of years on this issue that you have brought to us today
and the reauthorization of the Sickle Cell Disease bill. 2018
was the first reauthorization that has happened since 2004 when
it was tacked onto a tax bill, believe it or not. So can you
speak to why it is important that we reauthorize the bill?
Dr. Thompson. I am happy to. And thank you so much for your
long-term support.
One of the important things that happened in this most
recent cycle was the ability to expand this program so that it
now covers all 50 States. But all of the efforts prior to that
were focused on certain areas, and the fact--prior to this most
recent cycle, there was a substantial region, and that is the
U.S. Southeast, that was not included in competitive--as a
competitive region, clearly an area where there was a high
concentration of sickle cell patients.
This current structure allows us not only to ensure that
with this regional hub-and-spoke approach that we are--we have
access in all 50 States, but they are actually now diffusing
the expertise that occurs primarily at academic medical centers
and ensuring that patients actually have access to physicians
who are more knowledgeable, even if they are in primary care
practices, even if they are in community practices, and that
was a fundamental change----
Mr. Burgess. Sure.
Dr. Thompson [continuing]. For the comprehensive care that
is dispersed, I believe, in a more equitable way.
Mr. Burgess. And something you said during your testimony,
there have been various FDA-approved therapies that have
happened in the past couple of years, is that not correct?
Dr. Thompson. That is absolutely correct, yes.
Mr. Burgess. And we sat in this same hearing in 2016, the
sickle cell disease advocate was at the table where you are. I
can't say that I was paying complete attention, but she made
the statement, it has been 40 years since there was an FDA-
approved treatment for sickle cell. It really--I mean, it
jarred me because 40 years took me back. I was an intern at
Parkland Hospital taking care of sickle cell patients in the
emergency room. So in that 40-year timespan, we hadn't helped.
I know the things that Representative Guthrie is talking
about in his value-based care that he offered in a different
bill that we heard in a markup, and it is expensive, and we
have to pay attention to that. But is there any way to estimate
what was the cost of doing nothing for 40 years?
Voice. Oh, I forgot to do this.
Dr. Thompson. I think that is a very difficult equation.
You are absolutely right. But having said that, even in that 40
years when we just had one drug, that drug was hydroxyurea, a
repurposed chemotherapeutic agent. And I daresay that since it
was originally approved in the late 1990s, we really have seen
repeated clinical trials, many of which were federally funded,
that continue to demonstrate its effectiveness, and it is not
expensive.
Having said that, it is currently one of the many drugs
that we currently are experiencing in shortages in this
country.
Mr. Burgess. I see.
Dr. Thompson. And so certainly we have multiple problems.
We have a limited number of drugs, and then even some drugs
that clearly will work, we currently are experiencing a
shortage. We also still have providers who are unaware that
there are any treatments available for sickle cell disease, and
so we think that there are opportunities to utilize things----
Mr. Burgess. True.
Dr. Thompson [continuing]. Like the HRSA program to
disseminate that kind of education and training.
Mr. Burgess. That is absolutely critical.
Dr. Cherot, let me just ask you a couple of questions on
both the PREEMIE Act and the Preventing Mental Deaths Act. On
the Preventing Maternal Deaths reauthorization, you kind of
answered this question for Representative Eshoo, but can you
just speak to the fact that it is important to reauthorize to
build on the work that has happened before?
Dr. Cherot. Absolutely, yes. First and foremost, thank you,
and thank you for your story of your daughter. The PREEMIE Act
helps shrink our knowledge gap, I should say, and closes that
gap around the data that we need to continue to fill in to be
able to do that research. We need the--CDC's PRAMS Program is
one such highly effective tool that has allowed us to better
understand trends, risks, and other factors impacting pregnant
and lactating people, and that alone is in this.
Mr. Burgess. So--and this will help providers, right,
taking care of those very premature infants?
Dr. Cherot. Absolutely. We talked about neonatal intensive
care unit that at--who are at the bedside who need better data.
I think about the 30 years I have been delivering babies. The
surfactant was a huge impact helping lung expansion. Getting
more research and solutions to help preemies is where--the aim
of this.
Mr. Burgess. Very good. Thank you, Mr. Chairman, I will
yield back.
Mr. Guthrie. The gentleman yields back. The Chair
recognizes Mr. Sarbanes for 5 minutes for questions.
Mr. Sarbanes. Thanks very much, Mr. Chairman. As this
hearing makes clear, Congress must authorize this year several
healthcare programs to continue critical data collection,
research, treatment efforts that promote better access to care
and cures for millions of Americans. One of those, as we have
heard, is the National Firefighter Cancer Registry, which seeks
to improve data collection to better target efforts to address
cancer prevalence among firefighters. It is a vitally important
effort because these selfless first responders are often
exposed to PFAS, as we heard, and other toxins daily as they
protect our community.
Mr. O'Connor, first, thanks for your lifetime of service,
thanks for your service to the citizens of Baltimore County,
which I am very familiar with. Given the high-risk exposures
that firefighters face, explain again the importance of the
registry, and then in particular the actions the fire service
and local governments are taking to ensure that their
firefighters are getting the requisite screenings, if you
would?
Mr. O'Connor. Thank you, Congressman. The fire service
traditionally has not been awash in good data. In fact, quite
frankly, the data that we have is terrible. That is partially
responsible for the fact that it is a local function of
government, so there has never been a repository for anything
really in the fire service. And as medical science and research
has proven the occupational risk of cancer, we have never been
able to get a handle on the overall number of firefighters who
have cancer, where they are located, what specific exposures
are the cause, the frequencies of the cancers, many of which
are very, very anomalous, they are not the normal prostate,
they are very strange cancers.
What proves that more than anything else is the aftermath
of 911. We lost 343 firefighters that day during the collapse,
but since then there's been over 1,100 who have died from
various respiratory and cancer illnesses, and they are just
very strange illnesses. So we are trying to get a handle on
that.
So the registry, when it was originally conceived, it is
voluntary, but to try to actually get a full accounting of all
the firefighters, career and volunteer, we encourage people to
register, whether or not they have been afflicted with cancer,
so that we develop a baseline for future studies.
In our view, the best mechanism to try to deal with this is
through early screening. And regrettably, there is no mechanism
to do that. In our State of Maryland, the Professional
Firefighters of Maryland, the local that you represent in Anne
Arundel County, Howard County, Annapolis, the airport, their
members self-pay essentially to have screenings, cancer
screenings. The jurisdictions don't provide it.
That is a real problem because we know that if we get
firefighters early, they are detecting stage 1 pancreatic
cancers, for example. That is treatable. When it gets beyond
that, it is a death sentence.
So our two challenges are, one, making sure that we have
adequate data and making sure that our members have access to
that type of testing. What would be ideal, quite honestly, if
HHS followed the World Health Organization and essentially
recognized firefighting as a high-risk profession so that
insurance coverages would take care of these testings and our
people wouldn't have to self-pay.
Mr. Sarbanes. Thank you very much, I appreciate it.
Let me switch gears quickly. One of the benefits of this
graduate medical education program that we have been taking
about with Children's Hospital is that it contends with two
significant and intersecting challenges, one being the
children's mental health crisis and the other being healthcare
workforce shortages at every level of care. And this program
holds a unique opportunity to help us address both
simultaneously.
Dr. McNamara, as a pediatrician, medical professor, can you
speak to the importance of a strong GME program for children's
hospitals on our ability to strengthen an expand the pipeline
of both mental and physical health providers we need both now
and into the future?
Dr. McNamara. Thank you very much. Sorry about that.
We are very good at what we do in supporting young people
in navigating this new mental health crisis. We cannot do with
less resources. It is simply not tenable.
We do need more, but we are training ourselves in how to
provide excellent mental healthcare by consulting with other
experts. The guidelines are improving in order to kind of
address the crisis that you have alluded to. If we are less
supported, there will be nothing that we can do, and I just
have to make that abundantly clear. We cannot make do with
less.
Mr. Sarbanes. I appreciate that very much, and it is
unfortunate that there is this effort to undermine the program
when it can protect the health and wellness of every single
child and adolescent. That concern, that focus is too important
for partisan politics, so I urge the committee to take that
responsibility seriously. Let's pass a clean reauthorization
bill. And I yield back.
Mr. Bucshon [presiding]. The gentleman yields back. I now
recognize Mr. Latta for his 5 minutes.
Mr. Latta. Thank you, Mr. Chairman, and thanks to our
witnesses for being here today.
And, Mr. O'Connor, if I could start my questions with you.
First, thanks for your service out there. You know, when I--in
fact, last night about 9:00, right across from this building
there was a ladder truck, another fire--a pumper truck, and an
ambulance right here on campus. And so we all know that our
firefighters and our first responders are there 24/7 for us,
and so we thank you for it.
One of the things I would like to maybe check--talk to you
a little bit about, because I know you were talking about the
registry and the baseline and the screening. You talked a
little bit earlier because, again, when I look at my district,
the vast majority is volunteer. And so, you know, when you are
talking about volunteers, first of all, I go to so many fish
fries, pancake days, barbecues to try to help support. But
there is no way we can keep up with it for them because, again,
in talking with our chiefs out there and other firemen and
firefighters, you are looking at probably 11 to 13,000 thousand
dollars to equip a person just, you know, a fireman--a
firefighter out there right now, and so it is pretty expensive.
But, you know, when you are talking about with the registry
and the baseline and the screening, can--how do we work with
our volunteers out there, because first of all, with 70 percent
of the country at volunteers, and we are--we have seen
volunteers--unfortunately, we are losing folks that they just
aren't volunteering like they used to. What--how do we help
there?
Mr. O'Connor. Well, first, thank you for recognizing the
difference between a ladder truck and a pumper. A lot of people
don't make that distinction.
I don't presume to speak for the National Volunteer Fire
Council, but I will say this: Under the leadership of our newg
general president, Ed Kelly, for the very first time in
history, our organization sat down with the leadership of the
NVFC, and we are trying to forge a path together to help
volunteers with retention and recruitment and making sure that,
for a lot of our members, the mandatory overtimes and the
staffing shortages are abated.
So I share your overall concern with the volunteer fire
service. They provide an invaluable service to the community
which they serve, and the dedication of providers is really
unmatched.
With respect to the actual cancer registry and how we
address that, it is more of a challenge. What we are trying to
do on the career side, in departments large and small--and
there is a misconception, too, with the IAFF. Most of our
locals are under 30 members. Yes, we represent New York and the
big locals, but throughout Ohio we have 285 affiliates in a lot
of small towns, so we face the same challenges. But, of course,
on a volunteer basis, they are not employees.
So we are trying to figure out a way to create incentives
that the people register because their risks are no less than
the risks that our people face. So in terms of your larger
question, you know, it really needs to be an overall effort.
I also want to credit the U.S. Fire Administrator, Dr. Lori
Moore. We had a summit--the first summit in like 50 years of
all the fire service organizations up at Emmittsburg, and we
came out with one theme, and it is one voice fire service. And
I can assure you the partnership between the organizations and
the providers at the local level is very strong.
Mr. Latta. Oh, thank you.
Mr. Manahan, if I could switch real quick to talk to--about
your very--your testimony is so powerful. You know, I--
hopefully we will have a cure in the future, but, you know,
some of the statistics out there, you know, in your testimony
that 1.2 million people in the United States struggle with
Parkinson's today, and it is expected to double by 2040.
Mr. Manahan. Yes, sir.
Mr. Latta. Could you--and I know I only have about a minute
left, but could you maybe go into that? Why are we going to see
a doubling of the numbers in Parkinson's, and what we can do?
Mr. Manahan. Well, I think there are several factors. Let
me give all the statistics first real quick, and then I will
address your question. There's over a million people with
Parkinson's. Fifty percent--I am sorry, 90,000 new people get
diagnosed every year, and that is 50 percent higher than they
first originally thought. Well, we are getting a lot of
firefighters who are also getting Parkinson's disease.
It is the fastest-growing neurological disease in the
country. The number of people with Parkinson's, as you had
mentioned, is supposed to double by 2040. Chemicals are playing
a role in that. I--you know, I think chemicals in firefighting,
obviously, but there's a lot of chemicals that people have been
exposed to early on in their years and as they grow older they
get Parkinson's disease, and they make themselves more
susceptible to Parkinson's disease.
But I--you know, I think without a congressional mandate,
we may be waiting for a cure for many years down the road. I
think we have the time right now to do something really, really
great for people with Parkinson's.
Mr. Latta. Thank you.
Mr. Chairman, my time is expired, and I yield back.
Mr. Bucshon. The gentleman yields back. I now recognize Mr.
Cardenas from California for his 5 minutes.
Mr. Cardenas. Thank you, Chair Guthrie. I appreciate this
opportunity for us to have this hearing. Really pleased to see
some of the bipartisan bills that we have been working on that
we will be discussing here in this committee. But at the same
time, I am deeply disappointed in the partisan Children's
Hospital GME proposal put forth by my Republican colleagues.
There is bipartisanship. However, clean reauthorization
that easily could have been noticed by my Republican colleagues
just had to take--they just had to take another punch at young
people, trans kids. These children, human beings just like you
and me, who have done no wrong, no harm to anybody else, but
just want to live their lives in truth. It is unfortunate that
this bill is here before us. Welcome, everybody, to Pride
Month.
This Republican majority has gone out of its way not only
to demonize access to care for trans children but to cut off
access to Children's Hospital GME resources for any provider of
those services. Why? Why is it so critical that you control the
medical decisions of other people's kids and of those kids'
doctors? I am once again shocked by the party of limited
government's stunning overreach into these private medical
decisions.
Now let's look at the numbers. In 2022, nearly one in five
transgender kids attempted suicide. Of trans children who
received gender-affirming care, there were 60 percent lower
odds of depression and 73 percent lower odds of self-harm or
suicide thoughts. That is, in fact, life saving. There has been
real honest bipartisan agreement in this committee on the need
to improve youth mental health, yet now we are further
attacking these kids' access to care, degrading their mental
health in the process, and pouring gas on the fire.
You want to protect kids? All kids? Well, gender-affirming
care seems to have lifesaving, positive impacts on the mental
health of trans youth. So this isn't about protecting American
kids at all. And that is what is worse. You are pulling this
political stunt when we know that one of the greatest threats
to our healthcare ecosystem is workforce shortages. It is
shameful that Republicans are holding pediatric care resources
hostage to score political points at the expense of already
vulnerable trans children, young human beings.
The price of admission to practice pediatric medicine
cannot and should not be discriminated against, especially when
it comes to children.
Dr. McNamara, in your experience, when patients have access
to gender-affirming care and can exist in gender-affirming
environments, in what ways does this improve adolescent
outcomes?
Dr. McNamara. Thank you, Congressman Cardenas, for this
question. We have spent a lot of time talking about how
vulnerable transgender youth are, but I would like to take a
moment to talk about how privileged I am to be able to care for
them and how privileged I am to be part of a larger medical
community that does.
When transgender youth have unrestricted access to an
affirming social environment and to medical treatments that
they qualify for and that they desire and that their parents
consent to, they thrive. Now what does it mean for an
adolescent to thrive? It means that they are not their gender
identity solely. It means that they develop their talents, they
get really good at the piano, they learn how to ice skate, they
get scholarships to college, they become productive members of
our community who will make us stronger for years to come.
In my clinical experience, I have seen this happen in a
myriad of ways, and it is often that triangle of patient-
parent-provider support that makes it happen. There is no room
in there for anything else.
Mr. Cardenas. Thank you. We have limited time for our
questioning, but I just wanted to say thank you so much for
putting your heart and soul into every single one of your
patients and treating every single one like a deserved human
being. You say that you are privileged to have them and care
for them. They are privileged to have you truly, truly care for
them, to see them, to love them, and to give your heart and
soul to your work and to them and their lives. Thank you very
much.
My time has been expired. I yield back.
Mr. Bucshon. The gentleman yields back. Mr. Griffith is now
recognized for 5 minutes for his line of questioning.
Mr. Griffith. Thank you very much, Mr. Chairman.
Mr. O'Connor, can you elaborate on some of the work being
done to help lower PFAS toxins in firefighter gear that would
make it more resistant to both the PFAS and maybe help
firefighters as well?
Mr. O'Connor. We are--technology is trying to catch up to
this issue, and I am certain that Representative Dingell will
probably bring it up. I know that she and Chairman Graves from
the Transportation Committee are working on a bill that will
soon be introduced on that issue.
The first thing that really needs to be done is more
testing. It is very, very abundantly clear that this exists in
a vapor barrier. The history behind it is most firefighting
gear, apparatus training, et cetera is established by standards
promulgated by the National Fire Protection Association. They
have a standard, without getting into all the details, that
essentially a composite turnout--a piece of turnout clothing
has three layers: an outer layer, an inner layer that is a
moisture barrier, and a layer beyond that.
The moisture barrier is the area in which the PFAS is. And
quite honestly, the way the standards were promulgated, only
gear that had PFAS in it would be able to meet the standard. It
is an ultraviolet light standard, which intuitively makes no
sense because it is the middle layer of a garment. Its
opportunity to see ultraviolet light is basically nonexistent.
And this has created the problem.
So there's various enterprises looking, studying it. The
University of Notre Dame was the first one that really brought
it up. I can't think of the researcher's name, but I will get
you the information on some of the definitive evidence with
respect to it.
But there are people looking at it now, and I know there is
going to be a field test that is going to begin in Metro--West
Metro, Colorado. Chief Don Lombardi is partnered with his local
affiliate there, and they are putting a first set of supposedly
non-PFAS gear into the field. It is a major issue. I am not the
safety and health issue expert in our organization, but it is
our number-one issue in the fire service addressing the status
of our gear.
Mr. Griffith. So here is one of the things I love about
these hearings, and I know sometimes people think why am I
here--people are moving in and out, and we have two hearings
going on right now, and some people have other committees--but
it raises questions in your mind.
So I toured a number of years ago a facility in Pembroke,
Virginia, that is Giles County, a few miles outside of the area
where Blacksburg is, i.e., Virginia Tech. They have a product
or they have a company out there called NanoSonic. They
actually make fire gloves. So I called them--had my team call
them while I was in here listening to the testimony.
They don't use PFAS. And it is basically a fabric with a
glass, and I am going to get it all wrong, but it was really
interesting. It is glass inside that creates your barrier to
temperatures. I mean, I have had my hand in one of their gloves
over an acetylene torch. Nothing.
Now you can only use it once because once it is heated, the
glass transforms and will no longer provide the protection. But
it provides that protection while the firefighter is wearing it
and there's no PFAS. So add that to your list. NanoSonic out of
Giles County, Virginia.
Mr. O'Connor. If I can just comment.
Mr. Griffith. Yes.
Mr. O'Connor. I will make sure that our safety and health
people reach out to them. But as a W&L guy, I know a lot of
good things come from the Shenandoah Valley.
Mr. Griffith. There you go.
Mr. O'Connor. So thank you very much.
Mr. Griffith. There you go. Yes, and I was W&L Law, just so
you know. Yes, that's good.
Voice. Go Generals.
Mr. Griffith. Let's talk about the cancer registry itself.
So you want folks to sign up for it. Is that before they have a
cancer, you want everybody to sign up for it, and how does it
work, and then how does it identify what the cancers are, and
can it eliminate--or can it maybe focus in on some of the
substances that are causing these cancers?
Mr. O'Connor. What I alluded to in my oral testimony----
Mr. Griffith. Yes.
Mr. O'Connor [continuing]. Is it really just started in
April. And part of the reason--to answer, I know she's no
longer in the room, but the ranking member's question----
Mr. Griffith. Yes.
Mr. O'Connor [continuing]. Is it was a combination from
what we have been told--we are obviously sorely disappointed
that it has taken this long, but a combination of COVID and
some cyber issues related to protecting people's personal
health information.
Mr. Griffith. Right. Yes.
Mr. O'Connor. So that is what the delay was. And, again,
right now we only have 4,000 people. We want everybody to sign
up because the key is a baseline.
Mr. Griffith. Yes.
Mr. O'Connor. When people are hired into the fire service,
there's fitness requirements. So generally people coming in are
a heck of a lot healthier than the general population. That is
the one of the reasons that local governments always want
firefighters included in their medical plans because we bring
down the risk.
Mr. Griffith. Right.
Mr. O'Connor. As the exposures occur over the years, that
is when the cancers develop. So what we need is for the kid
that comes into the fire academy or to volunteer, test him
immediately----
Mr. Griffith. You want to follow him all the way through.
Mr. O'Connor [continuing]. And follow him through to----
Mr. Griffith. I am running out of time. I want to ask one
more question. It is not because I am against it, I am just
curious because I am going to have to defend it with some of my
friends. The number in the bill is almost double what it was
previously. Can you tell me quickly why the reason for that is?
Mr. O'Connor. The technology, trying to trace some of it.
Mr. Griffith. OK.
Mr. O'Connor. And, again, I think it is--in the scheme of
things, it is a very modest----
Mr. Griffith. It is 5.5 million overall.
Mr. O'Connor. Right, right.
Mr. Griffith. That is after it has been doubled.
Mr. O'Connor. Yes, sir.
Mr. Griffith. All right, I yield back.
Mr. Bucshon. The gentleman yields back. I now recognize
Mrs. Dingell from Michigan for her line of questioning.
Mrs. Dingell. Thank you, Mr. Chairman.
I want to thank all of the witnesses for being here today
because you each have a very personal story, and it is--we
understand it, and it is hard, and quite frankly, I have been
on the board, I have worked with almost all of your
organizations, and members have personal stories here. So I
want to just thank you for that and sharing that with us.
My late husband used to say that our children are 25
percent of our population and a hundred percent of our future.
And I know that it is really important that we make sure that
we have got all the tools and resources to make sure that all
of our children live and grow and thrive, and that should be
one of our top priorities. So I do have to make a point before
I get to my other questions, that I am concerned about the
dangerous impact of the current bill we are considering on
reauthorizing the Children's Hospital Graduate Medical
Education Program, because I think we are putting politics into
deeply personal healthcare decisions.
The CHGME Program extends far beyond transgender youth. It
provides vital Federal support for children's hospitals across
the Nation. The program trains 56 percent of all general
pediatric residents. Its importance in training the workforce
that keeps our children healthy and safe cannot be overstated.
But this bill would not only prohibit funding for gender-
affirming care, but it withholds funds from any hospital
providing it. Just in my State, the Children's Hospital in
Detroit and the University of Michigan treat anybody who comes
through its doors. These are mental health issues, and we
really need to understand what we are doing here, and I think
it is unacceptable.
But I want to turn my attention to the bill that deserves
our full support. It is bipartisan. The Gabriella Miller Kids
First Research Act 2.0, which we authorize an increased funding
for pediatric care research.
I was glad to introduce this lifesaving bill alongside
Representative Wexton, Cole, and Bilirakis. For those who don't
know, DIPG is a devastating pediatric brain tumor. It is almost
always fatal, and the average overall survival for children
diagnosed is less than 1 year. The bill is named after
Gabrielle Miller, a childhood cancer advocate who lost her
battle with DIPG when she was 10 years old.
But I have had the sadness, unfortunately, of working
closely with children and families struggling with the horrors
of DIPG, like the Carr family. Jason--or, Jason is the father.
Chad Carr. I lived with him from the time that he was diagnosed
until he died at age 5. And Jack Demeter, a young boy who lost
his battle with DIPG at the age of 3. Watching someone live
with cancer at any age is hard, but it is gut wrenching when
you are watching a child.
So, Dr. Thompson, I know you are here to discuss sickle
cell disease, but within your capacity as chief of the Division
of Hematology at Children's Hospital of Philadelphia, you are
also a professor of pediatrics. Could you talk about or do you
agree that more robust funding for pediatric cancer will help
find new treatments and cures for young patients, and can you
also--because I am not going to have a lot of time and I got to
get one firefighter question in--talk about why childhood
cancer differs from adults?
Dr. Thompson. I will do my best. But certainly there are
many childhood cancers that are completely unique. They are not
ones that occur at an early stage in children. Some of them
actually occur only in children. We have made some remarkable
advances in pediatric care, such that 80 percent of children,
because of research, are surviving. DIPGs--children with DIPGs,
unfortunately, are not in that group. We are lucky if they
survive 1 year.
These are the opportunities for research, and many of our
children's hospitals are also some of our most important sites
for pediatric research. Pediatric research only makes up about
10 percent of the NIH's budget, but what we do with that is
remarkable, and so certainly we look for it to be funded by
nonprofits, by private-public partnerships, as well as other
governmental agencies.
But we can't underscore the number of advances that we have
made in pediatric care that have largely come from evidence
basis, and those are from research.
Mrs. Dingell. Thank you. OK, 20 seconds left.
Mr. O'Connor, we--I have highlighted, and I want to thank
my colleague who really asked the questions that I was going to
ask, and I hope--Mr. Graves has been busy, so we are hoping to
get our bill, and we hope you will join us.
But is there anything that--you have highlighted the
importance of it and the danger. Is there anything you want to
add in 3 seconds?
Mr. O'Connor. [Laughter.] Just that it needs to get done.
Our lives are at stake. And we thank everybody for their
leadership and support of it.
Mrs. Dingell. Thank you for all our firefighters do.
I yield back, Mr. Chair.
Mr. Bucshon. The gentlelady yields back. I now recognize
Mr. Bilirakis for his 5 minutes.
Mr. Bilirakis. Thank you. And thank you, Mr. Chairman, I
appreciate it very much. I wanted to specifically thank Chair
Rodgers for including two of my bills, the Gabriella Miller
Kids bill with Representative Dingell and a couple others, but
also the National Plan to End Parkinson's Act. Thank you very
much for including them in today's hearing.
The Gabriella Miller Kids First Research Act 2.0, H.R.
3391, is legislation I colead, again, with Representative
Wexton as well and, of course, Representative Tonko. And it
would authorize the important pediatric research initiative at
the National Institutes of Health, NIH. Sadly, cancer is the
single leading cause of death of children in the United States
of any disease, approaching 10,000 diagnosed annually, under
the age of 15. We still have a long way to go to improve
survival for our most vulnerable patients, our children, who
are diagnosed with brain tumors, prevalent cancers, and other
pediatric rare conditions. We must continue to allow this
program to conduct the critical research needed to improve
outcomes and accelerate treatments and cures.
My other bill is H.R. 2365, the National Plan to End
Parkinson's Act that I lead with Representative Tonko, and it
would unite the Federal Government through an advisory council,
public and private stakeholders, in a national effort and
strategy to support research, development, recommendations with
the goal of treating and curing Parkinson's disease.
So I have a question for Mr. Manahan. And I tell you what,
you did an outstanding job, sir. Thanks for sharing your story.
Mr. Manahan. Thank you.
Mr. Bilirakis. We really appreciate it very much. It makes
a big difference when you hear the personal stories. Thank you
again for sharing your story. Your advocacy is extremely
impactful, and I greatly appreciate you sharing it.
You have highlighted the burden that this disease has on
the patient and the families physically, emotionally, and
financially. I personally understand this. My uncle died from
Parkinson's, late 50s, and my brother just passed way over--
just over a month ago, and Parkinson's. He was diagnosed in his
mid-40s. My father has Parkinson's, early stages, and my
mother-in-law, late--mid to late stages. So I understand the
disease even though I am not a physician.
So, again, this--the lack of treatment options leave
patients, families, and the American taxpayers in a terrible
predicament with little place to turn, as you said. Could you
please elaborate on why this legislation is so vitally
important right now? Time is of the essence.
Mr. Manahan. Yes, sir. I am excited about the National Plan
because for the first time it is going to give the Federal
Government and stakeholders a chance to sit down and talk face
to face. There is going to be a seat at the table where it
hasn't been before for patients, caregivers, Parkinson's
specialists and doctors. And I think without a mandate--without
a mandate, it is not going to happen.
And we need this plan because I fear that if we don't do
something this year or next year, the problem is going to be
that we will not come up with a cure for Parkinson's in years,
which I hope, versus decades.
Mr. Bilirakis. Thank you. And I want to also commend
Michael J. Fox, obviously.
Mr. Manahan. Yes.
Mr. Bilirakis. What he has done, his foundation, what he
has done to define treatments and potential cures for this
disease, and I know they are behind this legislation as well.
So he has been extraordinary, there is no question.
I have talked extensively about the need to ensure we are
coordinating Federal efforts. That is the key, coordination,
rather than a duplicative and siloed approach to healthcare.
And initiatives like Operation Warp Speed proved that with the
right public-private partnership we can accomplish a
significant amount.
So again, Mr. Manahan, what will the creation of an
advisory council mean for coordinated and comprehensive public
and private research?
Mr. Manahan. Well, I look at the biomarker which we--I had
mentioned earlier today, as the hope for the future. But this
legislation is the hope for people that have the disease right
now. It is going to bring together the Michael J. Fox
Foundation and the private foundations and the Federal
Government. In fact, you know, I talked to someone who served
on the advisory board for Alzheimer's, and one of the things
she said to me was that this national plan really worked out
well because the Federal agencies got a lot of opportunity to
find out what they are doing.
So it is just not the Federal agencies and the private
foundations talking, it is actually the Federal agencies
talking amongst themselves.
Mr. Bilirakis. Yes. And this piece of legislation is
modeled after that piece of legislation.
Mr. Manahan. Yes, sir.
Mr. Bilirakis. To cure Parkinson's.
Mr. Manahan. Sure is.
Mr. Bilirakis. I mean, Alzheimer's in this case. Thank you
very much, and I really appreciate it. I have a couple more
questions, but I am not going to go too far over.
So I appreciate it, and I yield back, Mr. Chairman.
Mr. Bucshon. The gentleman yields back. I now recognize Ms.
Kuster--Mr. Ruiz showed up. I didn't see him down there. Dr.
Ruiz----
Mr. Ruiz. Thank you, Doc.
Mr. Bucshon [continuing]. Is recommended--is recognized----
Mr. Ruiz. I'm just clearing my throat. Allergies.
Mr. Bucshon. I'm recommending him too.
Mr. Ruiz. [Laughter.]
Mr. Bucshon. But he is recognized for 5 minutes.
Mr. Ruiz. Before I begin, I want to give a very special
recognition and shout to students from my district from the
Migrant Farmworker Education Program that are here visiting
Washington, DC. They are--some of them are walking in right
now. They are very, very, very special to me because my mother
was a migrant farmworker who toiled the fields day in and day
out with calloused hands and tired backs and minimal rest day
after day after day. And they are attending the same schools
that I attended, and I am true and blue from the farmworker
community. And so if you don't mind, let's give them an
applause for being here.
[Applause.]
Mr. Ruiz. Thank you. Thank you very much.
I want to touch on two different topics here today. First,
I would like to address the policy that would pull funding from
children's teaching hospitals that provide age-appropriate
gender-affirming care for transgender and nonbinary youth. I
echo my colleagues who have already spoken out to protect the
relationship between patients and their doctors, and this
harmful and misleading rhetoric and policy that purports to
protect kids is actually doing the opposite: It is a bully
policy that bullies one of--some of our most vulnerable kids.
Research shows that gender-affirming care improves the
short- and long-term mental health and well-being of trans and
nonbinary youth. The science is there, the studies are there,
and every major medical association supports it. Decisions to
get age-appropriate gender-affirming care is one that should be
made by parents and their kids in consultation with their
doctor, not by the Federal Government.
And in addition to placing transgender and nonbinary
youths' mental health at risk, these policies are also risking
the future of our pediatric workforce. We already have a
pediatric shortage. Children's hospitals train half of our
country's pediatricians, and this proposed policy only forces
those hospitals to choose between doing what is best for their
patients or training the next generation of pediatricians.
Dr. McNamara, as a doctor, and I am very concerned how this
policy will harm the mental health of our transgender and
nonbinary youth as well as the future pediatric workforce of
our country. Can you address the consequences these policies
will have both on our transgender and nonbinary youth and on
our pediatric workforce?
Dr. McNamara. It all goes hand in hand, sir. Thank you for
your question because it highlights the fact that pediatric
healthcare is a tightly knit fabric and you cannot pull out one
thread; the whole tapestry would unravel. The healthcare of one
child is--you know, we don't think about it like that, I guess.
We don't parse out groups of youth and say, you know, well, it
is OK to care for you and it is not OK to care for some of
them.
Mr. Ruiz. Correct.
Dr. McNamara. So we simply would never accept this policy.
As far as mental health goes, I mean, even just the rhetoric
that we have heard today is very damaging and harmful to trans
youth. I think that one of the reasons why rates of suicidal
ideation over the past couple of years and other mental health
harms in trans youth has been going up is because of how they
have been demonized.
Mr. Ruiz. Yes, and the rhetoric leads to depression, leads
to anxiety, leads to suicidal ideation. It also encourages
others to use the same rhetoric, their peers, that leads to
bullying. Transgenders are already number one on the hate
violence crime list.
So I would like to pivot to another topic: cancer
detection. Mr. O'Connor, thank you for your remarks today and
for general president Ed Kelly's and the International
Association of Fire Fighters' longstanding leadership in
promoting the health and safety of our Nation's firefighters.
Thanks to your work with Congress to establish the Firefighter
Cancer Registry, we now know that cancer is the leading cause
of death for firefighters, exceeding heart attacks, smoke
inhalation, burn injuries, vehicular accidents, and other fatal
injuries. In fact, firefighters face a cancer risk that is 14
percent higher than other Americans', and it is truly an
epidemic.
So the IAFF's leadership goes beyond researching the data.
You are leading the Nation in ideas. Look, I led the--help lead
the effort on the burn pits and the associated ingestion of the
toxic smoke, so I know that a lot of the things that burn have
carcinogens.
Will you--Mr. O'Connor, will you share with the committee
how the ability to find more cancers earlier would benefit your
retirees, their families, and so many others, at-risk seniors
across the country?
Mr. O'Connor. Real quickly before I answer that directly,
I----
Mr. Ruiz. You only have 15 seconds.
Mr. O'Connor. I know, I know. I want to add that wildfires,
the constant smoke is exposing to everybody, including
citizens.
Mr. Ruiz. I agree.
Mr. O'Connor. Screening is the key. Screening is the key.
If we get our people in early and we are able to track it, we
will be able to solve the--we will be able to cure the cancers
and catch them at early stages. But screening is crucial.
Mr. Ruiz. Great. Well, I truly support this bill, and I
also have another bill called the Nancy Gardner Sewell Medicare
Multi-Cancer Early Detection Screening Coverage Act, which will
be able to more efficiently detect cancers early, and I
encourage the committee to also look into that one.
Mr. O'Connor. I know we expired. I mentioned that in my
oral testimony.
Mr. Ruiz. Thank you. Bye.
Mr. Bucshon. The gentleman yields back. I now recognize Mr.
Johnson from Ohio, 5 minutes.
Mr. Johnson. Well, thank you, Mr. Chairman. I want to thank
Chairman Guthrie for having this hearing today, and thank you
to our panelists for joining us here today.
We are considering a number of bills and important
reauthorizations here today, including the Children's
Hospitals' Graduate Medical Education Payment Program, which
funds freestanding children's hospitals. This money helps their
graduate medical education programs train resident physicians
and dentists.
We all understand the toll that the pandemic took on the
most vulnerable in our society, particularly our children, from
not being able to go to school--something we will not know the
true side effects of for years to come--to masks, and anxiety.
COVID-19 weighed heavy on America's boys and girls.
It is critical that we support our Nation's children's
hospitals. Nothing is more important to me than ensuring the
mental and physical health of our young people. That is why I
am proud to support Representative Crenshaw's legislation
reauthorizing the graduate medical education payment program.
Yes, I am deeply troubled by reports that a growing
consortium of American medical professionals are pushing highly
controversial treatments like gender-affirming surgeries,
hormone therapy, and puberty blockers on children and teenagers
when we do not know the true impact of their long-term mental
and physical health.
So question number one: Dr. Grossman, in your position as a
child, adolescent, and adult psychiatrist, what types of
treatment methods for kids diagnosed with gender dysphoria are
backed by scientific data? If you need me to repeat that, I
will.
Dr. Grossman. No, no, no, I heard you. Thank you very much,
Congressman, for the question. We have known for decades that
if these kids are left alone or just given psychotherapy and
family support, that the vast majority will become comfortable
with their sex, with being a boy or a girl. We have known that
for a very long time.
Recently, we have started applying so-called gender-
affirming care to a new cohort, a new group of kids that we
have never seen before, and those are kids who suddenly out of
the blue develop the gender dysphoria as part of what more and
more people are realizing is a social contagion.
Mr. Johnson. So you are saying that if they received the
kind of support at home and mental health counseling,
traditional mental health counseling, that they grow through
this phase and they become comfortable with who they are?
Dr. Grossman. I am not--yes. I am not saying every single
person.
Mr. Johnson. Sure, sure.
Dr. Grossman. But in the past, the research that has been
done on those kids would say so.
Mr. Johnson. Well, that is interesting because, you know,
as my colleagues across the aisle frequently like to say, we
need to follow the science here. In Dr. Grossman's opening
remark, she noted that the United States is moving in the
opposite direction from our European counterparts in terms of
how those nations view gender dysphoria treatment. Simply look
at our friends in Great Britain. Just recently the National
Health Services in London announced that publicly funded
services will no longer routinely offer puberty blocking drugs
to children.
This on the back of a 2023 global public opinion survey of
30 countries asking whether or not transgender teens should be
allowed to receive gender-affirming care. This survey showed
the United States as having even less public support for these
treatments than virtually every single European country polled,
including the UK.
The fact of the matter is the United States is moving in
the wrong direction. It is moving in a very extreme direction
and is becoming a global outlier on this issue. I personally
believe it is irresponsible and essentially child abuse to
allow minors to make these types of life-changing medical
decisions. But on the facts, we simply do not know enough to
say for certain that we should be allowing these treatments at
all.
I find it disturbing that some children's hospitals are
pushing puberty blockers or hormone therapies on children
incapable of understanding the lifelong--long-term effects of
these treatmentss. Children's hospitals are meant to be the
gold standard of pediatric care in our communities, and their
support for such programs will lead parents and families to
trust what they are saying despite the data telling a different
story.
I do have other questions that I will submit for the
record, Mr. Chairman. I realize my time is expired. This is a
real important and emotional issue for many of us, especially
those of us who are grounded in our faith and as parents. We
see this as an aberration and----
Mr. Bucshon. The gentleman's time is expired.
Mr. Johnson. I yield back.
Mr. Bucshon. I now recognize Ms. Kuster for her 5 minutes.
Ms. Kuster. Thank you, Chairman Guthrie. I am glad this
committee is dedicating time to reauthorizing several important
health programs, all on a bipartisan basis. The list is
impressive: supporting premature infants, expanding the dental
workforce, committing Federal resources to end Parkinson's,
protecting our firefighters, to name a few.
Today's hearing should be an opportunity to celebrate the
important role that Congress plays in dedicating resources to
people with rare diseases and providing support to our
country's health workforce. However, I am extremely
disappointed as a parent that today's hearing includes a
partisan attempt to villainize children and bring politics into
our healthcare system.
I recently had a lovely breakfast with our Chair. We share
a concern about the well-being of our youth. But I want to
quote her comments at the beginning of this hearing. She said
she wants to send a message to our children ``that they are
loved as they are.'' Trying to scare our Nation's pediatric
hospitals into denying gender-affirming care to patients to fit
a political agenda is not just cruel, it is nonsensical, and it
puts the health of millions of children at risk.
As Dr. Ruiz has recounted and our experts today have
affirmed, this type of rhetoric from Members of Congress in
hearings like this leads to suicidal ideation and bullying and
is harmful to our children. Let's make one thing clear right
now: The Government has no role in policing what care doctors
and nurses should provide to their patients. Medical decisions
are between a patient, their family, their parents, their
guardian, and their physicians. Trying to insert the Federal
Government into these incredibly private, incredibly sensitive
decisions is simply unacceptable.
In my home State of New Hampshire, our State motto is to
``Live Free or Die.'' We value privacy, we value the privacy of
our medical decisions, and we do not need the United States
Congress to interfere in that privacy. This legislation flies
in the face of our State motto.
So, Dr. McNamara, in your testimony you state that
healthcare providers must consult with parents and legal
guardians about care that is provided to children. Could you
explain to this committee and to my colleagues the importance
of informed consent when providing all kinds of medical care to
our youth?
Dr. McNamara. Absolutely. Thank you for your question,
Congresswoman, and the thank you for your comments. It makes my
patients feel safer.
So parents play a central role in all medical decision
making for minors in the vast majority of cases, and regarding
medical treatments for gender dysphoria, it is no exception.
Parents know their kids best. They know what they need. We as
pediatricians rely on their knowledge of their young person in
order to help support them best.
In the case of medical treatments for gender dysphoria, the
standard of care and the way that care is practiced in this
country is with a multidisciplinary team with an--excuse me, an
iterative over several visits, several months, mental health
assessment, and long conversations that don't really have an
end point. That may be a little bit different from other
aspects of pediatric care, but it is something that my
colleagues are--and I are very skilled at doing. We know how to
do it. And this care overwhelmingly benefits transgender youth.
Ms. Kuster. I just have to--as an aside, I was an adoption
attorney for 25 years, and I primarily represented birth
parents who made the decision to place their children for
adoption. And I can remember working with two teenagers. I
remember when we went before the judge, looking over and
realizing that the young man had never shaved, he still had the
peach fuzz on the side of his face. And trust me, there was no
room for the Federal Government in making those personal,
private decisions about our health, our well-being, and the
well-being of our families.
I just want to say that the claims that we hear about
gender-affirming care in this room and in the media are
dangers, and I want to join my Chair in sending a message to
our children that they are loved as they are. Thank you so
much.
I yield back.
Mr. Bucshon. The gentlelady yields back. I now recognize
myself for 5 minutes for my line of questioning.
I am a physician, and I understand the issues related to
gender dysphoria, and I do recognize it is real. However, I can
never support permanent surgical procedures on children,
regardless of other--the other need for treatment for their
dysphoria. Again, I would remind everyone, these are
irreversible. Permanent surgical procedures, in my view, should
not be part of a treatment plan for transgender children.
In the House Energy and Commerce Committee, look, we are a
legislative workforce. You look at the House floor, a lot of
our bills come from here. And we manage to do much of our work
on a bipartisan basis, and we are doing I think mostly that
today. And I am proud of that. We are continuing to be a
workhorse for Congress as we have a number of important public
health priorities we are discussing here today.
So I am going to ask a couple of questions. Doctor--is it
Dr. ``Sher-oh''? Dr. Cherot, in Indiana we have the third-
highest maternal mortality rate in the Nation, with 44 deaths
per 100,000 live births as of 2022. According to the March of
Dimes' own data, Indiana has an infant mortality rate of 6.6,
which is higher than the U.S. rate of 5.4. These are statistics
we are not proud of, but our Governor and our State government
as well as the medical community, are trying to find ways to
improve this, and we are focusing on that.
Can you talk about how H.R. 3226 and H.R. 3838 will benefit
mothers and babies in States like Indiana and how we can--how
this will help us advance?
Dr. Cherot. Absolutely. Thank you for the question. The--
within States we have our MMRCs and our really important--to
look at the details of the deaths that do happen. And what
happened is that we identify those contributing factors, using
that to then translate those into action. And those MMRCs are
important across every State to collect that data.
I would say that the Federal collection activities underpin
the work of the March of Dimes and that those agencies and
partners address the maternal and infant health crisis. We want
to increase that data to get to solutions that are vital to be
able to impact.
Mr. Bucshon. Well, thank you. I just want to say we have
had a hearing in the past--a number of hearings in the past on
this, and we had data out of Parkland Hospital in Dallas,
Texas, a famous hospital, and their data is outstanding on this
issue----
Dr. Cherot. Yes.
Mr. Bucshon [continuing]. On maternal mortality. And they
have defined protocols on how they manage----
Dr. Cherot. Yes.
Mr. Bucshon [continuing]. The patients. And their patient
population are primarily the underserved, uninsured, and also
ethnically diverse population, so it can--this can be done,
correct?
Dr. Cherot. Yes, absolutely. We have seen States that have
changed their outcomes using different PRQCs to get to really
standardized protocols, realizing that there are lots of
impacts that we can have both on maternal death rates as well
as preterm birth.
Mr. Bucshon. Yes, and it is shocking that this does cross
socioeconomic class also. We--you may or may not know, we just
had a famous athlete who was----
Dr. Cherot. I do.
Mr. Bucshon [continuing]. Who we found out what resulted in
her death, tragically, at home, and why that happened I don't
think we know.
Dr. Thompson, can you talk about what innovation means to
patients with sickle cell disease? That is kind of open ended.
I want you to basically comment on what you want to say about
where we are in innovation and what we can do.
Dr. Thompson. Thank you. And innovation actually is a
spectrum. Innovation in--I think in its best possible terms
really is looking at discovery science that moves to the
bedside. And so, if I were to look at the best-case scenario
today, today is a possibility of gene therapy for a variety of
blood disorders and immunodeficiencies.
For some people, innovations is what I otherwise call
standard of care, because today there still are individuals in
this country whose current providers, whose current communities
lack resources for them to actually understand what is
available to them. So we know that there are now a number of
disease-modifying therapies that have been FDA approved across
a wide range of ages. If innovation means that those
individuals now have access to those, then certainly that
should also be a form of innovation that I hope we would also
embrace.
Mr. Bucshon. Yes. I will finish with this. I did my medical
school at the University of Illinois in Chicago, and at Cook
County Hospital we had a lot of people come in with--in sickle
crisis, and this is just a--you know, if we--particularly
genetic therapy is exciting because it is just a tragic
disease. Also people in renal failure and organ--other organ
failure because of it. So I am excited about the future,
particularly of gene therapy in diseases like sickle cell.
With that, I yield back.
And I recognize now Ms. Craig for her 5 minutes.
Ms. Craig. Thank you so much, Mr. Chairman. I am incredibly
disappointed to see my Republican colleagues today taking what
has always been a bipartisan effort to reauthorize a program
that we have always supported and twisting it into a partisan
process that undermines parents' rights and ignores evidence-
based care guidelines for the treatment of trans youth.
We should be here today to support a clean reauthorization
of the Children's Hospital Graduate Medical Education Program.
But oh no, you are putting the program in jeopardy in support
of your continued culture war crusade. Look, I have a newsflash
for my colleagues: It is none of your business what evidence-
based care a parent in consultation with their healthcare
provider decides for their child. In fact, after listening to
you today, I am absolutely certain that most of you have no
idea what the range of gender-affirming care actually is. So
let me start with that.
Dr. McNamara, can you define for us what age-appropriate
gender-affirming care actually is for my colleagues? Just a
little bit.
Dr. McNamara. This is absolutely crucial. Thank you so much
for the question. Gender dysphoria is real. It represents a
discordance and distress that emerges from the difference
between--I minced my words. It is the difference--I minced my
words again. I am so sorry.
It is distress that emerges from the difference between sex
assigned at birth and gender identity. Without treatment, this
care--with this condition is dangerous and debilitating.
Gender-affirming care starts with affirmation. It starts with
very simple things like is it OK to get a haircut, is it OK to
wear certain clothes, or to change your name into something
that feels more authentic.
And from there, we see that youth begin to blossom. Some
youth qualify for and desire medical aspects of gender-
affirming care, and it is a highly individualized process. It
depends on who the young person is, their parents, and the
conversations that evolve from there. There is no end point and
there is no prescripted plan of care. It depends on the person
who is before us.
Ms. Craig. And, Dr. McNamara, that care has been supported
by 20 major medical associations, including the American
Academy of Pediatrics, the American Psychological Association,
and the American Medical Association. Am I correct?
Dr. McNamara. Absolutely.
Ms. Craig. Can you just for a moment rebut the claim that
has been made here today that the United States is somehow an
outlier in the care that gender-affirming care represents?
Dr. McNamara. So I urge this body to make any decisions
based on sound information and science. No other country in the
world who is a peer of the United States has gone as far as to
ban and criminalize the provision of medical treatments for
gender dysphoria. What you have heard today is a cherry-picked
collection of unverified information that portrays outlier
views in some countries in this world.
There are many countries in this world that nobody has
brought up today that I could list off, like Ireland,
Australia, Spain, Portugal, Canada, Mexico, among others. But
this is the greatest country in the world, right, and our
medical science and innovation here is amazing. I am so
privileged to be able to practice this care.
Ms. Craig. Dr. McNamara, thank you so much. You have
already spoken to how dangerous it can be if that care is
denied or if medical professionals are not appropriately
trained in order treat this and provide this care.
I get that some of my colleagues think this topic is a
political winner. I would extend an invitation to every single
one of you, many of whom I respect, to attend a panel of
parents of trans youth to hear their stories. What you are
attempting today undermines the rights and responsibilities of
the parents of trans kids and is opposed by all the major
medical organizations in our Nation.
We agree, Madam Chair--I have so much respect for you--that
the goal is to love our children for who they are. Some of our
children are transgender. Do we have enough space in our hearts
to love and accept them, too, for who they are? Some of your
kids and grandkids will be trans. Do you really want any
politician sitting in this room involved in their healthcare
decisions?
And with that, I yield back.
Mr. Bucshon. The gentlelady yields back. I will now
recognize Mrs. Harshbarger for 5 minutes. I surprised her.
Mrs. Harshbarger. Yes, you surprised me. Thank you, Mr.
Chair. I thank all the witnesses for being here.
And, Mr. Manahan, I am proud to be an original cosponsor of
the National Plan to End Parkinson's Act introduced by Reps
Bilirakis and Tonko. The bill aims to unite the Federal
Government in a mission to cure and prevent Parkinson's and
alleviate financial and health burdens on American families and
reduce Government spending over time. And the biomarker which
detects the protein that is associated with damaged neurons
that is used--now you can detect Parkinson's earlier is amazing
to me.
My father has suffered from Parkinson's. He will be 90 next
month. And it is an ongoing battle, and I understand everything
you are talking--the younger you are, the more problems you
have as you age.
The National Institutes of Health is a Federal agency with
the largest budget for supporting Parkinson's disease research,
I think 259 million in 2022.
Mr. Manahan. Mm-hmm.
Mrs. Harshbarger. My question is, do you have a sense of
what the NIH thinks of this legislation?
Mr. Manahan. Well, Dr. Richard Hodes, who is the Director
of NIA, testified in the Senate and answered a question from my
senator, Senator Shelly Moore Capito, about whether or not they
thought that the national plan would be a--something that they
would support. And his quote is he found it to be
extraordinarily valuable. I have not had any other
conversations with NIH or NIA, but apparently the NIA, Richard
Hodes, has--supports it.
Mrs. Harshbarger. OK.
Mr. Manahan. Thank you.
Mrs. Harshbarger. Thank you.
Dr. Cherot, I know the March of Dimes is a strong advocate
for the PREEMIE Reauthorization Act and to reauthorize the
important Federal research education intervention programs to
improve pregnancy outcomes and infant health, of course, to
reduce the premature, preterm births and infant mortality, and
I am pleased we are taking that legislation up.
I wanted to ask you about another issue, though, that has
come across my desk. It is about the aluminum content in
parental nutritional products. It has been recognized for
decades as a toxic contaminant, especially dangerous for
preterm babies due to their immature kidney function where they
can't, you know, expel that, and it causes bone toxicity, brain
toxicity, developmental delays, and premature babies are
especially susceptible to aluminum toxicity because of their
digestive systems that are not fully functioning.
Previously, the FDA took the position that preterm infants
not receive more than 4 to 5 micrograms per kilogram of body
weight of that aluminum product. Now the FDA is poised to raise
that aluminum to almost 17 times the previous approved
standards.
Does the March of Dimes agree that we should continuously
strive to reduce those aluminum levels in prenatal products and
that the FDA should not approve or permit to remain on the
products with high aluminum levels when lower aluminum products
are available?
Dr. Cherot. So, first, I appreciate the question, but I am
not a nutritionist, nor am I a neonatologist. So I am an
obstetrician/gynecologist.
Mrs. Harshbarger. OK.
Dr. Cherot. But I would say the March of Dimes is
absolutely advocating for research in nutrition.
Mrs. Harshbarger. Mm-hmm.
Dr. Cherot. Breastfeeding as well as nutritional
supplements to look for the best things for premature birth for
those babies. But I would have to get back to you on that
answer.
Mrs. Harshbarger. Yes. Yes, I wish you would do some
research on that because there is----
Dr. Cherot. I'll note that. Yes, absolutely.
Mrs. Harshbarger. Yes, there's a lot of toxic side effects
associated with that aluminum product. So for them to change
course on this is to me unacceptable. So thank you for that.
And with that, Mr. Chairman, I yield back.
Mr. Bucshon. The gentlelady yields back. I now recognize
Ms. Kelly for her line of questioning.
Ms. Kelly. Thank you so much, Mr. Chair. I am so happy to
see so many bipartisan bills to improve the state of health--of
the healthcare system for all Americans. First I would like to
recognize the bipartisan Action for Dental Health Act of 2023
that I gladly led with my colleague Rep Mike Simpson. Oral
health affects our ability to eat, speak, smile, and show
emotions. Oral health also affects a person's self-esteem,
school performance, and attendance at work or school.
Regular, preventive dental care is essential for oral good
health so one can find problems earlier when they are easier to
treat. Unfortunately, many don't get the care they need. More
people are unable to afford dental care than other types of
healthcare. Children, low-income Americans, minorities, and the
elderly are especially at risk for having limited dental care
and poor health outcomes.
I would also like to submit for the record a letter from
the American Dental Association in support of this legislation,
which provides a crucial workforce grant program focused on
providing access to care for those most in need.
Additionally, I am elated to see so many bipartisan bills
being brought forward to address the maternal health crisis. I
would like to take this moment to pay respects to Tori Bowie, a
32-year-old Black woman who was an Olympic-winning track star.
Unfortunately, she passed away on May 2nd. A preliminary
autopsy has determined that her cause of death is attributed to
possible complications of pregnancy.
And I am so tired of learning about these stories,
especially when data shows that 84 percent of maternal deaths
are preventable. This is unacceptable. I will continue to work
on legislation to address this issue.
I would like to thank my colleague, Rep Burgess, for
including a piece of my MOMMAs bill in the Preventing Maternal
Death Act, and I would lock arms with anyone who wants to make
this country the safest place to give birth.
Dr. Cherot, would you please elaborate on how maternal
mortality review committees determine if a pregnancy-related
death is preventable, and do any State MMRCs in particular
stand out as a success story so we can continue to promote best
practices?
Dr. Cherot. So first, thank you. Yes, MMRCs are crucial at
getting at the data, and they need--their State, Federal--
really getting to all of the data from the stakeholders and
getting to our PQRCs. Our maternal mortality rates are better
in some States than others. Our--and just as the March of Dimes
puts out data on maternity care deserts and preterm birth, we
also look at this data exclusively.
Specifically for your State, I am dragging data through and
hoping that my crowd is pulling up yours. But there are some
that are much, much better because they take the data and then
really put into action some of the stuff that comes out of the
American College of OB/GYN and AIMs, really looking at how do
we standardize protocols and procedures were some of the most
crucial, like hemorrhage, like cardiovascular. And we have made
huge efforts in those, and there is more to come that needs to
be done. And clearly Black and brown women are suffering in
this country, and our Olympian died in the month of May.
Ms. Kelly. Mm-hmm.
Dr. Cherot. And she died--what they think, we don't know,
but what has been put out in the press is on eclampsia, which
is seizing. I have dealt with this many a time, and it is
preventable.
Ms. Kelly. Right.
Dr. Cherot. And she was supposedly found in labor and
preterm labor.
Ms. Kelly. Mm-hmm.
Dr. Cherot. So not only do these women suffer, their babies
are dying, too, and are more likely to. So thank you for
bringing that to the attention.
Ms. Kelly. Well, thank you for your work.
And I just wanted to tell Mr. Manahan, my grandmother had
Parkinson's. And I wanted to thank Mr. O'Connor for your
service. I used to work for local government, so I know how
important you are.
Lastly, I would just like to state that it is unacceptable
that clinics and clinicians that provide gender-affirming care
to our youth have seen a rise in harassment and death threats.
I have heard from those who are on the front line and want to
speak up but are remaining publicly silent for the safety of
themselves and those around them. This is unacceptable in our
society. I am proud to speak up and speak out on their behalf.
Defunding postgraduate pediatric training programs if they
give proper care to transgender youth is reckless and
dangerous. The Federal Government should not be involved in the
healthcare decisions between a parent and their child.
And with that, I yield back. Thank you.
Mr. Bucshon. The gentlelady yields back. I now recognize
Mr. Carter for 5 minutes.
Mr. Carter. Thank you, Mr. Chairman, and thank all of you
for being here. This is extremely important. And as a
healthcare professional, healthcare outcomes have been my focus
since I have been a Member of Congress and long before that,
even when I was a member of the Georgia State Legislature.
I am from Georgia, and we have one of the highest maternal
mortality rates in the country. And for the life of me, I
cannot figure that out. It baffles me. I do not understand why
Georgia has such a high maternal mortality rate. And it is
something that I have worked on for probably the last--when I
was in the Georgia State Legislature and when I have been here,
so probably 20 years, and I think I am just as confused now as
I was when I started, and it is really disappointing.
The CDC just recently released data that showed that the
number of pregnancy-related deaths in the United States
continued on an upward trend in 2021, with over 1,200 deaths
that year. Twelve hundred. In America, in the United States.
And, again, I am just baffled by this. But I am proud that I am
coleading along with Dr. Burgess legislation to Preventing
Maternal Deaths Reauthorization Act, and hopefully we can get
that passed, and I think we will, and it is very important.
Now I know you were just talking about maternal mortality
review committees, and they are very important. In fact, when I
was in the Georgia State Legislature, we passed Senate Bill
273, which created the MMRCs, putting it into the Georgia
Department of Public Health, and it was one of the things that
we have done to address this embarrassing situation that we
have in our State.
Dr. Cherot, I wanted to ask you--again, we have talked
about the role of MMRCs and--but why are they so important?
Dr. Cherot. Well, they are vital in understanding the
causes and implementing changes to prevent future tragedies.
Most of the information on maternal deaths cited today are
based on data from MMRCs, and we need more of it.
Mr. Carter. OK. Well, let me ask you, are you familiar with
Georgia and how----
Dr. Cherot. Yep.
Mr. Carter [continuing]. They are using it?
Dr. Cherot. So----
Mr. Carter. Because that was legislation I worked on when I
was in the legislature there.
Dr. Cherot. Yes. Because the Preventing Maternal Deaths Act
grant funding to be sustained so, yes. In Georgia, they
recently published a series of recommendations for providing
these case management services for women during pregnancy and
up to 1 year postpartum, implementing a blood pressure check at
72 hours--not 3 weeks, not 2 weeks, but 72 hours after
discharge when a patient has pre-eclampsia.
Mr. Carter. Good.
Dr. Cherot. They educate patients, right? They also provide
reproductive life planning and counseling, and they improve
communication coordination for patient care----
Mr. Carter. Good, good. Well, thank you.
And I want to shift gears real quick and talk about sickle
cell disease because, again, here we are in Georgia and we have
got some of the highest rates in--and, you know, I am proud of
my State, and I love my State, it is my home, it is where I
have lived all of my life, where I intend to live the rest of
my life, but I just cannot figure out why we are leading in
some of these things. And sickle cell is--and as a pharmacist,
I know and I have seen and witnessed just how awful a disease
it is and how painful it is. But we are home--Georgia is home
to one of the largest sickle cell disease populations in the
country.
Dr. Thompson, how does--and let me preface this by saying
that Dr. Burgess, again, and I have legislation that we are
cosponsoring, H.R. 3884, the Sickle Cell Disease and Other
Heritable Blood Disorders Reauthorization Act. So how does the
reauthorization of critical cell disease programs ensure that
patients have the support and resources that they need?
Dr. Thompson. Well, the principal benefit of this Act
really is to the extent that we actually can disseminate the
education and training, moving it from our academic medical
centers to where the patients are. And so really having--
utilizing the hub-and-spoke model for actually getting more
information, more knowledgeable providers and taking care of
sickle cell disease.
I should also note, especially from your State of Georgia,
that the benefits of actually combining the work that HRSA does
with the data collection from the CDC has also been quite
helpful. That the Centers for Disease Control started out with
two States, Georgia and California, and that that data from
those two States has helped to inform----
Mr. Carter. Good.
Dr. Thompson [continuing]. Better ways to actually identify
patients and to treat them.
Mr. Carter. Great, great. I am sorry, I don't have long,
but do you want it? I will yield to the lady from Washington.
Mrs. Rodgers. Thank you. I appreciate the gentleman
yielding.
I just wanted to address the CDC bills. We are considering
these specific individual reauthorizations today because they
are set to expire, but we also plan on looking at broader CDC
authorization and reform this Congress. We must do our job as
authorizers to ensure these programs are operating as intended,
with proper accountability and oversight.
CDC has a history of often relying on Section 301 or 317 of
the Public Health Service Act, which provides very broad
research and grant authorities to continue these programs, even
if Congress does not specifically reauthorize them. These
authorities were initially crafted in the 1940s and 1960s and
then built upon further since then. As a part of looking at CDC
reform, I think perhaps a good initial step would be to examine
the use of these broad authorities and ensure that there is
transparency as to when, how, and to what extent they are given
as well as if these authorities are even still necessary at
all, given work on smaller programs like the ones that we are
considering today.
I appreciate the gentleman yielding.
Mr. Carter. And I will yield back. Thank you, Mr. Chairman.
Mr. Bucshon. The gentleman yields back. I now recognize Dr.
Schrier for 5 minutes.
Ms. Schrier. Thank you, Dr. Bucshon, and thank you to all
of our witnesses here today.
I want to just talk about two things today. First is
Children's Hospital Graduate Medical Education funding, and the
other is direct primary care. I am going to start, just like so
many of my colleagues, just up in arms that this funding would
be held hostage for political gains.
I am a pediatrician. My residency training was funded by
CHGME. That was at Children's--Lucile Packard Children's
Hospital at Stanford. And I understand how important that
training is and that pediatricians need to be trained in a
whole gamut of care and need to be prepared for whomever comes
in their office.
Children's Hospital GME funding has been reauthorized on a
regular basis five times in a bipartisan way since 1999, has
increased the number of pediatricians available to all of us
and our kids. Right now, thanks to COVID and a number of other
factors, we are facing a shortage of pediatricians and other
physicians. This is coming at a time of increased need. We hear
a lot of discussion in this committee and elsewhere about
children's mental health and increased needs.
And it is just unimaginable to me. I mean, frankly, until
today's hearing, I could never have thought that this funding
would be held up for some sort of political agenda, and putting
kids who are already bullied and vulnerable right at the center
of it.
This program needs to be reauthorized in a timely fashion.
Children's hospitals depend on it. I just--the Children's
Hospital Association has requested a clean authorization. I
would like to submit a letter into the record on this
specifically from the Children's Hospital Administration.
Mr. Guthrie. No objection.
[The information appears at the conclusion of the hearing.]
Ms. Schrier. Because healthcare--whether we are talking
about women's healthcare or children's healthcare or other
training of physicians--this is not something that should be
dictated by politicians. I don't have any questions about that
particular topic.
The other topic is about direct primary care, and I am
excited to see that the Medicaid Primary Care Improvement Act
is on the docket today, clarifying that Medicaid can utilize
the direct primary care model. This is designed around
healthcare, not fee-for-service billing, and the way it works
is patients or Medicaid or insurance companies pay an
affordable monthly fee that allows doctors the time they need
to just really work on their patients' health.
Doctors have a certain number of patients in their panel
who they are responsible for providing the best possible care
for. A smaller patient population often means that more time
can be spent on preventative care, diet, counseling,
preventative measures. And it often turns into a better
relationship between doctor and patient, fewer visits to the
emergency room, and better outcomes.
One doctor in my State, Dr. Garrison Bliss, is a pioneer in
this effort. He has done it in many different contexts,
including Medicaid. Was one of the first in Washington State.
And he notes that most of his patients are over 60 years old,
and none of them died from COVID. And he credits that
relationship and close contact and avoidance of ER visits. This
model of care just deserves to have more pilots around the
country, hopefully with similar results.
And I was just going to ask Dr. McNamara, first, thank you
for speaking so beautifully about the care of transgender kids,
and if you want to add anything or correct the record on that,
you are welcome to do that in the remaining minute, but I also
wanted to ask you whether this direct primary care model, how
that would affect your practice and the relationship you have
with your patients.
Dr. McNamara. Thank you, Congresswoman, and it is a
pleasure to speak to a fellow pediatrician.
Primary care is the foundation of health and wellness in
this country. It is a privilege to take part in our primary
care system and to see children flourish into adolescents who
become my favorite patients.
As far as correcting the record, it is difficult to do so
in a way that does justice to the amount of misinformation that
we have all heard today. I urge this body to deliberate over
the extensive documents that have been submitted to the record
that debunk this disinformation and misinformation and to base
their decisions on science.
Ms. Schrier. And I will just add in my 10 seconds that I
appreciate your noting how much engagement with the patient and
the family happens with counselors, psychologists,
psychiatrists, physicians, endocrinologists to make sure that
you have got this right and the care that these children and
young adults really deserve. I wanted to call attention to that
thoroughness and the care that you provide. Thank you.
I yield back.
Mr. Guthrie. Thank you, the Congresswoman yields back. The
Chair now recognizes Mr. Crenshaw from Texas for 5 minutes.
Mr. Crenshaw. Thank you, Mr. Chairman. I first want to
thank my friend, Representative Schrier, for her great
bipartisan work on the direct primary care bill that we have
been working on. It is--look, there's a lot of things we can
agree on, and this is certainly one of them, and this is a
small step in the right direction. I am really excited that we
are going to get this through.
But now there are some things we disagree on here, and that
is what we have been talking about a lot in this hearing. So
let's shift focus to the giant elephant in the room, and this
is the reauthorization for the Children's Hospitals GME
funding. And, yes, it is true, this is my bill, and what it
does is it withholds funding from these hospitals if they
engage in what they call gender affirmation therapy, these
physical changes to a child's physiology, permanently
disfiguring them through either puberty blockers or even
surgical modifications.
Now, look, I understand that the other side of the argument
here believes they are on the side of compassion, and maybe
that is a sincerely held belief. It is just as true that I
believe we are on the side of compassion. I think it is indeed
compassionate to stop kids from being permanently, physically
altered based on little to no evidence that it will improve
their underlying mental condition.
Now why is this controversial? That is actually beyond me.
Not too long ago I think we all agreed that performing double
mastectomies on a 12-year-old girl was wrong. Now it has become
a political movement where radical activists have bullied
mainstream medical associations and Members of Congress into
repeating this propaganda.
Now it should be noted that in the public this subject is
actually not very controversial. In fact, a recent poll just
last month by the Washington Post showed that 68 percent of
Americans opposed using puberty blockers on children. That is
just a question about puberty blockers. Imagine if the question
had been about castration or surgical interventions.
So you have got to convince me that 70 percent of Americans
are just a bunch of fools that refuse to accept the so-called
science. Or maybe--look, I have another theory. Maybe they have
a very baseline understanding of ethics and common sense which
tells us that maybe--just maybe--it is a bad idea to submit
children to permanent life-altering medical interventions based
solely on a temporary ideation about their gender.
Gender affirmation is not science, and there is no
evidence-based standard of care. To say that is a lie, or is at
best redefining the term ``evidence-based.'' What this is, is a
social contagion. It is based in pseudoscience and radical
ideologies, and it is sweeping across our country and
encouraging children to make irreversible changes to their
gender. What is worse, it is coming from adults and
institutions who know better, to include our children's
hospitals and institutions that are supposed to be tethered to
sound science and their Hippocratic Oath of ``Do no harm.''
Now, maybe I am an optimist, but I do believe that science
and evidence will win out in the end, and in the future we will
look back at these gender-affirming therapies as we now look at
lobotomies and electric shock therapies. I have some reason to
be hopeful. Notably, Great Britain's National Health Service
restricted these clinical interventions from minors just last
week. Reviews published in the British Journal of Medicine, the
Journal of the Endocrine Society, even in the American Academy
of Pediatrics, all cite the lack of evidence.
We want to submit for the record this review published in
the Journal of Endocrine Society that found that there is ``low
quality evidence for the idea that hormonal treatment improves
quality of life, depression, and anxiety among adolescents.''
Now here is the important part: This was a systematic review,
which by definition is not cherry-picked data, but it is an
all-encompassing review of all the data. It has thoroughly
debunked the notion that any of these treatments are evidence-
based, let alone recognized as standard care. My colleagues are
using these terms not as accurate representations of the data
but as propaganda.
Now, this funding program is reauthorized every 5 years. It
provides taxpayer funds to train resident physicians at
children's hospitals across the country. It is true, it has
been a bipartisan funding mechanism for years. Let's keep in
mind something, though: This is taxpayer money, and when 70
percent of taxpayers oppose these barbaric treatments on
minors, then taxpayer money should not fund it.
That is why I am stipulating that as part of this
reauthorization we will not provide any funding through this
program to children's hospitals that push gender transition on
minors through puberty blockers, hormone therapies, and
surgeries. Now let's be clear, because there is another lie
that's been told: It does not prevent any mental health
therapies at all. Despite these lies being told, it does not
prevent those kind of therapies at all.
This is the issue of our time. This is the hill we are
going to die on. It is too important. It is too important to
protect our kids from this.
In my very limited time--I have too limited--too much
limited time, so I will wait for my colleagues to yield to me
to ask questions, and I yield back. Thank you, Madam Chair--or
Mr. Chairman.
Mr. Guthrie. The gentleman yields back and the Chair
recognizes--do you have anyone----
Voice. Mr. Joyce.
Mr. Guthrie. Dr. Joyce, you are recognized for 5 minutes.
Mr. Joyce. Thank you for yielding, Mr. Chairman, to our
witnesses for appearing here today.
I think there's some subjects that we can agree on.
Innovation. Innovation in healthcare is critical for producing
better outcomes and improving the quality of care that patients
receive. That is why I, like many others on this panel, are
very concerned over the impact that the Inflation Reduction Act
is having and will continue to have on future development of
new treatments and new cures.
It has been 40 years since the Orphan Drug Act was signed
into law, and I am quite worried that the new misguided law
will undermine one of the greatest incentives that we have
seen, which has led to the development of over 600 novel
therapies and cures, cures for diseases. However, there is
still much work to be done.
There are over 10,000 rare diseases, 95 percent of which
lack an FDA-approved treatment. As enacted, the IRA
disincentivizes post-approval research and development and
seeks additional indications for promising treatments. This
will acutely impact pediatric patients, who by their nature
make up a much smaller subset of the total population.
Dr. Thompson, thank you for being here from CHOP in
Philadelphia. Is a decline in the research and development
investment in pediatric research a concern, and what impact
will that have long-term on the patients that you treat each
and every day?
Dr. Thompson. Thank you, Dr. Joyce. I think that there are
some phenomenal opportunities to continue to make progress not
only in pediatric health but also in the health of Americans
overall when we have the opportunity to intervene, to diagnosis
children and to treat them, largely coming from innovation. The
ability to incentivize manufacturers to continue to stay in the
space for rare diseases has been extraordinarily helpful.
There have been challenges with continue--with the
continuum to determining what will actually be paid for in
terms of insurers, and I do think that that continues to be
something that we need to be very mindful of because it is not
entirely clear that the incentives that are there to
manufacture the drugs are being paralleled with incentives to
actually cover them in the clinical space.
Mr. Joyce. Dr. Thompson, programs like Sickle Cell Disease
and Other Heritable Blood Disorders Research, Surveillance,
Prevention, and Treatment Act help prevent much-needed--help
bring much-needed hope to the rare disease patient communities
and help spur the research and development that will add new
and improved treatments for these rare diseases. How can the
lessons that we have learned from this program be used to
support research and treatment for other rare diseases?
Dr. Thompson. I think that the rare disease community is
energized and is quite unified in trying to continue to learn
from each other on how we can best go about that. Some of them
are private-public partnerships. There are certainly any number
of nonprofits that have been very active, especially family
foundations, in bringing some of these things to our attention.
Encouraging science and following the science and looking at
ways to bring innovation from the bench to the bedside is, I
believe, one of the things that many of our academic medical
centers do quite well.
I think without taking full advantage of the innovations,
the breakthroughs that are occurring in sickle cell disease, if
we don't take advantage of those in this patient population, it
really does send a message to those who are suffering from
other more rare diseases. And so I think we--I think embracing
this in sickle cell should be a very positive message to all.
Mr. Joyce. Thank you for that insight. Dr. Thompson, in the
past few years alone there have been a number of new
innovations in the cell and gene therapy space to cure, cure
hematologic diseases. Dr. Thompson, can you speak to how
impactful curative therapies for diseases could be for the
patients that you treat and the impact that they have on their
life to be cured of these diseases?
Dr. Thompson. It has been absolutely extraordinary and
very--and I have had the privilege of being part of the gene
therapy efforts over the last 10 to 15 years in the
hemoglobinopathy space. It has done two things. It--certainly
for the individual patients who have been successful, it has
been transformational. These are individuals who can now
complete their educations, raise their families, maintain full
employment, and can really live their best lives. And so for
the individuals, without question.
For me, it has also been a very hopeful one because many of
these diseases are now diagnosed by newborn screening. And
while I think in the past, many of these families were
devastated when they thought that they were bringing home a
perfectly healthy infant, yet to be told 2 weeks later that
their child screened positive for something. Gene therapy that
is being used right now in adults gives them tremendous hope
that their children can not only live long lifespans, they can
hopefully lead lifespans with far less disability than they
would have in the past.
Mr. Joyce. I think we can all conclude that innovation must
be maintained and must be maintained as one of the cornerstones
of American medical treatment. Thank you again, Dr. Thompson.
And, Mr. Chairman, I yield.
Mr. Guthrie. Thank you. The gentleman yields back. The
Chair now recognizes the gentlewoman from Massachusetts, Mrs.
Trahan, for 5 minutes.
Mrs. Trahan. I thank the Chair. I am grateful to all the
witnesses who came today prepared to talk about the bipartisan
public health bills that are being covered in the hearing.
We desperately need to advance proposals to address
firefighter cancer rates, end Parkinson's, tackle the maternal
health crisis, and so much more. Like so many of my colleagues,
I am disappointed that the legislation focused on critical
funding for our children's hospitals, and that is the one that
is being politicized, which is why so many of the moms on this
committee are speaking up.
There are 59 children's hospitals who receive funding for
graduate medical education from CHGME, just 1 percent of all
hospitals in the country. But together they train more than
half of our pediatricians and pediatric specialists across the
country. Boston Children's Hospital in my home State is home to
one of those training programs. In fact, the training program
at Boston Children's receives no funding through Medicare,
meaning it relies solely on CHGME funds to support their work
with interns, residents, and fellows.
The team at Boston Children's works around the clock to
serve the children who travel from all over the country for
specialized care. They deserve to feel supported by those of us
in positions of power, not like that they are pawns in a
political game. Pediatric providers are training, learning, and
making contributions to advance and promote high-quality and
effective care and treatment that every single one of us would
want for our own child, if it was ever needed.
Dr. McNamara, what are some of the challenges that
pediatric care workforce is facing, and can you give us
examples of the specialized care that would be disrupted if a
partisan battle over reauthorization of CHGME continues?
Dr. McNamara. So children need us more than ever. They have
more complex health needs and mental health needs than they
ever have. Part of that is because we are very good at
providing advanced care that we have been developing over the
years, and part of it is because of the current postpandemic
climate.
The examples of care that would be affected would be care
for congenital heart disease, intensive care for sick kids,
sick neonates, routine well care, dentistry. I could go on.
Mrs. Trahan. I appreciate that. Boston Children's Hospital
is home to the first pediatric and adolescent transgender
health program in the United States. However, misinformation
has repeatedly spread online suggesting the hospital performed
gender-affirming genital surgeries on young children, when in
reality, surgeries are only performed on consenting adults. But
that hasn't stopped healthcare workers at Boston Children's
from being subjected to threats and attacks.
Threats and attacks, by the way, that are a direct result
of a coordinated campaign designed to, and I am quoting a
Conservative Political Action Conference speaker here,
``eradicate transgenderism.'' And by inviting a witness to
elevate that dangerous rhetoric in the United States Congress,
the majority is allowing a target to be painted on the backs of
some of our Nation's most vulnerable children and the
healthcare professionals they rely on.
Dr. McNamara, can you speak to the dangers of increased
threats and attacks on our Nation's pediatric healthcare
professionals, and do you think this intimidation undermines
their ability to recruit specialists or continue providing a
high level of care?
Dr. McNamara. I absolutely do. I think if I was a medical
student looking at the current political climate, it would feel
overwhelming.
Mrs. Trahan. I appreciate your candor, Doctor. Time and
time again, I have heard my colleagues across the aisle discuss
the urgent need to address the youth mental health crisis. But
we can't do that if we ignore the fact that trans youth are
suffering higher rates of mental illness, higher rates of
suicide ideation, and higher rates of self-harm, a problem with
a large body of medical literature demonstrating that, with
support at home, in school, and in communities, coupled with
access to gender-affirming care, trans youth do as well on
mental health measures as their cisgender peers.
We should be working to increase access to healthcare for
all of our children, not to restrict the ability of children to
define and express themselves. A ban on gender-affirming care
is dangerous, it is misguided, and it is cruel, and it is a
shame the Republicans are using what should be a bipartisan
piece of legislation to contribute to the dangerous attack on
our most vulnerable children. They deserve better.
I yield back.
Mr. Guthrie. The gentlelady yields back. The Chair now
recognizes Dr. Dunn for 5 minutes for questions.
Mr. Dunn. Thank you, Mr. Chairman. I appreciate the hard
work this committee is putting in to ensure that critical
public health programs do not lapse this year. I am pleased
with the level of bipartisan collaboration shown to ensure that
the programs that are aimed at improving childhood and maternal
health serve our most vulnerable constituents. We are also
supporting research to fight rare diseases.
I do want to take a moment to echo the comments of my
colleague, Dr. Burgess, regarding the Children's Hospital GME
Program. I appreciate the bill put forth by my colleague, Mr.
Crenshaw, to protect children from harmful gender-approving
care and hormone therapy, and I understand that many children
may feel immense peer pressure and psychological distress for
many different reasons. These children need loving, caring
parental involvement, they need emotional support, and they
need highly specialized medical experts with their best
interest at heart. It is a monumental decision to undertake
gender transition surgery on a potentially fertile person. The
radical race to embrace gender transition is undoubtedly
harming some of our children.
When considering pediatric GME, it is critical that we
strike the right balance between banning appropriate treatments
and procedures and properly equipping physicians with the
skills and the knowledge they need to perform complex surgeries
and inform the choices that patients and parents make. There
actually are unique cases in which a baby is born with genetic
disorders that cause truly ambiguous genitalia. This is a mix
of male and female reproductive organs.
As a urologist, I am very familiar with such cases. Medical
surgical interventions may be needed to mitigate harmful side
effects and even to save lives. In these cases, it is important
that pediatric urologists have the specialized knowledge and
the proper skillsets to make the best decisions with the
patients, with the consent of their parents.
I actually do not have any questions, Mr. Chair. I am
willing to yield time to anybody on the panel. Mr. Crenshaw, I
recognize you.
Mr. Crenshaw. Thank you to my colleague, and I do have a
few questions.
You know, I want to say a few things first. We keep hearing
this is a politicized issue, this is a manufactured culture
war. I got to say, we aren't the ones who did that. We aren't
the ones that came up with this radical new movement that is
performing permanent physiological changes to children with no
evidence of any benefits. We didn't start that, we are just
trying to stop it because it is crazy.
It is a contentious issue, which almost 70 percent of
Americans oppose, so we are just saying here that taxpayer
money shouldn't be used for it. That is all. This should not be
that controversial of an issue.
My questions are for Dr. McNamara. I just want to ask you,
honestly, you are not concerned about the unknown effects of
puberty blockers, hormones, and surgical interventions in kids,
the long-term effects, you are not concerned about that?
Dr. McNamara. Everything I have said here today comes from
a place of deep honesty and conviction for the care that I
provide in the community that I am a part of.
Mr. Crenshaw. You have said that we have cherry picked
data. How do you mean by--what--how do you mean that?
Dr. McNamara. So it is very unscientific and flawed to pick
a single study or a single statistic and to discuss it in
isolation.
Mr. Crenshaw. Totally agree.
Dr. McNamara. Medical experts are able to talk about all of
the evidence as a whole.
Mr. Crenshaw. Totally agree. So it is good to look at
systematic reviews, right, that is the gold standard of
evidence when you are trying to understand whether something
works or whether it doesn't. So the British Journal of Medicine
looked at 61 systematic reviews with the conclusion that
``there is great uncertainty about the effects of puberty
blockers, cross-sex hormones, and surgeries in young people.''
The Journal of Endocrine Society came up with the same
conclusion. Even the American Academy of Pediatrics. They all
cite the lack of evidence.
And so here is the thing: If you are doing a therapy, and
it is, you know, temporary, whatever, fine, maybe let's try it,
let's see if it works. But when you are talking about permanent
physiological changes, do you not agree, just from an ethical
standpoint, that you might want extremely strong evidence of
the benefits? And there is no systematic review that states
that there is strong evidence of benefits.
Dr. McNamara. Sir, are you aware of how the quality
evidence grading system works and how it is applied?
Mr. Crenshaw. Yes. Yes, we read through it. That is why I
am citing these journals. So which journal says something
different? I am--we should have that debate. Tell me a journal
that has done systematic reviews that cites different evidence,
that cites strong evidence for benefits of these therapies.
Dr. McNamara. The standards of care were developed based on
extensive----
Mr. Crenshaw. You are not telling me any journal, you are
not telling me any study. Don't say standards of care----
Dr. McNamara. But that is not what--yes. So----
Mr. Crenshaw. Tell me one.
Dr. McNamara. The standards of care.
Mr. Crenshaw. The standards of care. That is----
Dr. McNamara. Yes, standards of care.
Mr. Crenshaw [continuing]. Not a journal, that is not a
study. That is not an organization, that is not an institution.
You are just saying words. Name one study.
I am out of time. I yield back.
Mr. Guthrie. And the gentleman's time is expired. Mr. Dunn
yields back. The Chair now recognizes Dr. Miller-Meeks for 5
minutes for questions.
Mrs. Miller-Meeks. Thank you, Mr. Chair, and I thank our
witnesses for being here and testifying before the committee
today.
I am proud to see my bill, H.R. 3226, PREEMIE
Reauthorization Act, included in today's hearing. And I thank
Ranking Member Eshoo as well as Representative Kelly, Blunt
Rochester, Burgess, and Kiggans for their hard work on the
legislation. As a mother and a physician, I understand the
harmful health implications of preterm birth and recognize the
importance of public health programs like PREEMIE which seek to
address the root causes. Also because I was a director of the
Department of Public Health.
In 2021, Iowa mothers gave birth to almost 3,700 preterm
babies, which represented 10 percent of all births in the State
that year. Not only do preterm births pose great health risks
to the mother and her baby, but they are close--very costly to
the healthcare system, as was alluded. Over 28 percent of
infant deaths are preterm related, and the average cost
associated with preterm births in Iowa is $50,000--$58,000.
Dr. Cherot, in your written testimony, you state that
almost two-thirds of pregnancy-related deaths are preventable
and that preterm birth rates worsened in 38 States between 2018
and 2019. Can you please explain how reauthorizing PREEMIE will
help reduce those rates and how funding will be used?
Dr. Cherot. So first, the financial impact of preterm birth
on the U.S. economy and families. Medicaid pays for 40 percent
of all deliveries, and an estimated 40 percent of medical costs
associated with preterm birth has a significant impact on both
Federal and State budgets. Our--what we are trying to advocate
for here is more research to go into more solutions that will
solve for the preterm problem in this country that you just
alluded to or highlighted and have dealt with in the neonatal
intensive cares across this country. And the point of this is
to be able to collect that data to translate those into real
actions.
Mrs. Miller-Meeks. Thank you.
I would also like to speak in support of Congressman
Crenshaw's legislation to reauthorize Children's Hospital GME.
The Republicans wish to reauthorize this, it is the parties on
the other side of the aisle that wish not to.
I know firsthand that a physician's training is a lengthy
and expensive process, which is why renewing CHGME to ensure
that there is sufficient supply of pediatricians to meet demand
is so important. The timely reauthorization of this program
through 2028 will continue a legacy of over 20 years of
supporting our healthcare providers. However, I am also
supportive of a ban on funding for hospitals that furnish
puberty blockers, hormone therapies, and surgeries for the
purpose of altering biological genitalia to minors.
So, Dr. McNamara, is an XY chromosome assigned at birth?
Dr. McNamara. I am sorry, I don't understand the nature of
your question.
Mrs. Miller-Meeks. Simple question. Is an XY chromosome
assigned at birth?
Dr. McNamara. We often don't do routine chromosome testing
on infants.
Mrs. Miller-Meeks. So an XY chromosome would not be
assigned at birth, nor would an XX chromosome, although you say
that sex is assigned at birth. There is a lack of scientific
evidence regarding the effectiveness of these medical
interventions, especially among minors, which is why countries
in Europe, such as Denmark, Britain, Sweden, have described
treatments as experimental and are urging doctors to proceed
with caution and why they have changed their guidance.
The purpose of healthcare is to treat and heal, and it is
not of interest--at the expense of physical and mental well-
being of patients.
What evidence, Dr. Grossman, do we have that the thriving
Dr. McNamara talks about is because of hormones or surgery and
psychotherapy, family support, regression to the mean, placebo
effect, or some other confounding variable? After all, there
have been no randomized controlled trials. Have there been
randomized controlled controls, Dr. McNamara?
Dr. Grossman. There have not. Randomized controlled trials
are what are the gold standard. That is what we are always
looking for in medicine. We do not have those kind of studies.
As you said, there are variables, confounding variables
that can interfere if a child is going through these gender-
affirming cares, so-called. The child may also be getting
psychotherapy. The family may be getting support. How do we
know that the improvement on the other side is due to the
hormones or the surgeries or the psychological support?
Mrs. Miller-Meeks. Yes. Thank you. And I think to say that
the Federal Government is not already involved in healthcare is
either naive or disingenuous. We saw that throughout the
pandemic, that Federal and State governments were both involved
in the doctor-patient relationship.
As a veteran, I defended the right--the constitutional
rights of Americans. As a doctor, I swore to do no harm because
I care about the physical and mental health of your children as
much as I do my own children.
Mr. Guthrie. Thanks----
Mrs. Miller-Meeks. I support restricting Federal funding
for experimental care----
Voice. Time.
Mrs. Miller-Meeks [continuing]. That is permanent and
irreversible in minors.
Mr. Guthrie. The gentlelady's time is expired.
Mrs. Miller-Meeks. Thank you, I yield my time.
Mr. Guthrie. The Chair now recognizes Mr. Pence for 5
minutes.
Mr. Pence. Thank you, Chairman Guthrie and Ranking Member
Eshoo.
I would like to speak in support of the Action for Dental
Healthcare Act of 2023. Across my district, dental
professionals continually communicate to me the impacts they
are feeling from workforce shortages. Healthcare facilities,
including dental practices, are struggling to maintain existing
staff and rising salaries, let alone find enough qualified
individuals to fill open positions. Universities are also
straining to maintain the necessary pipeline of our next
generation's health professionals.
As we look to reauthorize dental workforce programs through
the Action for Dental Health Act, it is important we ensure HHS
is prepared to support the growing demand for dental
professionals across the country and my Hoosier State.
I would like now to yield time--the rest of my time to my
colleague Congressman Crenshaw, a champion for our young
children.
Mr. Crenshaw. I thank the gentleman.
And, look, I just want to make a few more points. And I
want to run everyone through this thought experiment. So, you
know, my daughter is going to grow up with a father with one
eye, and at some point she might say, you know, I want one eye,
right, I identify as somebody with one eyeball--which by the
way, is far less important than your gender, just
physiologically speaking.
And so if I take her to the doctor and I say, ``Can you
just enucleate that eye for us because she identifies as a one
eye--she wants to be just like her dad,'' what would the
doctors say? They would say, ``You are crazy, and I am going to
have you arrested.'' That is what--well, that is what they
should say. And this is for a physiological intervention that
is far less important than your actual gender and your
reproductive organs. We have to stop this madness. This has
gone too far.
You know, I asked before about what evidence is there that
there is benefit for these so-called standards of care. I mean,
anyone can say that they have a standard of care, but it has to
be based on some kind of evidence and research. And when you
have done systematic reviews--which is, again, is the gold
standard for how you come to a conclusion within the scientific
community, systematic reviews of 61 other systematic reviews--
and you find little to no evidence that there's benefits for
this, maybe you just press pause.
Maybe you just press pause. Because if we are doing
permanent physiological interventions to children that have--
permanently disfiguring them for some hope of a benefit that is
not conclusive, then maybe we should press pause. Like, that is
all we are saying. Press pause.
And actually that is--and actually it is even less than
that. All we are saying is let's not put taxpayer money toward
it, right. This is no different than how this Congress deals
with the Hyde Amendment. This is a controversial issue.
Abortion is a controversial issue, and so we say, ``Look, we
disagree on this, so let's make sure we don't put taxpayer
funding toward it.'' That is all this bill is.
Let's not put taxpayer funding towards something that is so
obviously unproven and contentious. Actually, I don't even
think it is--it is really not that contentious. Seventy percent
of Americans oppose it, so it is actually the American people
are pretty much on the side of not doing this, or at least
pressing the pause button.
Dr. Grossman, you are a child psychiatrist. Can you expand
upon the profound lack of clinical reviews and the long-term
impacts of these treatments: puberty blockers, hormones, and
surgeries?
Dr. Grossman. Well, yes, as I said, we don't have the kind
of studies that we would like. And I think it is very important
for people to understand that when we talk about standards of
care and we talk about guidelines and all the various
associations that have come out for gender-affirming care and
about politics and partisanshipness, those organizations
themselves are rife with politics. They are permeated with
politics. The American----
Mr. Crenshaw. Can you expand that? Just tell us how those
activists have pressured dissenting voices in this field.
Dr. Grossman. Well, yes, I just interviewed a number of
doctors for my book--pediatricians, endocrinologists--who
reported back to me on the fact that when they tried to speak
up and have panel discussions or presentations that challenged
gender-affirming care at the American Academy of Pediatrics or
at the Endocrine Society, they are simply not given that
opportunity. Even people, you know, who have written--writing
articles, the articles are turned by a lot of journals. People
have to understand that politics has--medicine, unfortunately,
is permeated with politics at this point.
Now, ideally, we wouldn't be stepping in. Who wants the
Government stepping in between doctors and parents and
children? Of course we ideally don't want that. But when there
is something that is so wrong that is going on, then I think we
have to.
Voice. Time.
Mr. Crenshaw. Thank you.
And I yield back to Mr. Pence.
Voice. Time. Time.
Mr. Guthrie. Yes, Mr. Pence yields back. The Chair now
recognizes--seeing that all members of the subcommittee have
been recognized, the Chair now recognizes Ms. Schakowsky for 5
minutes for questions.
Ms. Schakowsky. Thank you for allowing me to waive on to
this--to the subcommittee.
I just want to briefly begin by talking about children's
hospital--the medical education programs for children's
hospitals. I--in Chicago, I have Lurie Children's Hospital,
which is such a fabulous institute and the largest medical
provider in Illinois but is very concerned because of the
disparity between what is given to other hospitals and the
children's teaching hospitals. And I just wanted to mention
that because we do rely so much on that.
But I really now feel obligated and it is a privilege to
now talk about--as the only parent, I think, in this room, or
grandparent, of a trans young man, someone whose life has been
enormously improved because of his ability. Born as a girl but
finding his true self now as a young man who is living the life
that he--that belongs to him. He is now graduated from college,
he is teaching school, he is living with his girlfriend, and
fortunately in a place where he has the opportunities to get
the care that he needs and has throughout the period that he
needed it.
And so, Dr. McNamara, I want to thank you first of all for
your voice, and I wondered if you could just enumerate some of
the other falsehoods that we are hearing and that I have
experienced now in my family's lifetime.
Dr. McNamara. Thank you. So first of all, regarding
standards of care, that is not just a causal term. The
standards of care that outline how gender-affirming care should
proceed for people of all ages, including adolescents, have
been published in reputable journals. The Journal of the
Endocrine Society has published their extensively vetted
guidelines, which they have issued several times after
reexamining the evidence.
The World Professional Association for Transgender Health
issued the eighth edition of the Standards of Care, which is
based on peer review of hundreds of global experts who
basically perform systematic reviews in partnership with Johns
Hopkins. The AAP has also issued statements that issue kind of
practice guidelines that are taken very seriously in our
community.
Nowy, I want to address the low-quality-evidence argument
that comes up a lot, and it is critical that we all understand
here today that that is a technical term and that when it is
used for public consumption, it can be quite confusing. There
are ways to grade evidence using a very specific rubric where
the number of study participants, the length of followup, et
cetera is assessed. In medicine, we recognize that all clinical
care is different, all clinical research is different, and the
practicalities of conducting studies are different.
Low-quality evidence means that there is a basis of
evidence, and it often informs strong recommendations for care.
Ms. Schakowsky. Thank you for that. And I also want to see
if you could actually help us understand the kind of work that
is done with families. It--you would think that these children
are snatched away and taken someplace and done--but isn't there
a whole process that patients and their families go through,
and if you could tell us about that.
Dr. McNamara. Yes, ma'am. Well, oftentimes the care begins
with long conversations that take place over months and months
where families hear about all of their options. Parents hear
about the risks and the benefits, they hear about various
options, they ask lots of questions, and the young person gets
mental health support.
Ms. Schakowsky. And let me--and, finally, let me just say,
if you could speak to the importance of having both behavioral
healthcare and also the medical needs of these kids, how both
are so important. It is implied that it is only, you know,
the----
Dr. McNamara. Gender dysphoria is real and it needs to be
diagnosed by a specialist. That is the standard of care in this
country. Medical care does not proceed unless a mental health
specialist has diagnosed this condition.
Ms. Schakowsky. Thank you.
Mr. Guthrie. Thank you.
Ms. Schakowsky. I yield back.
Mr. Guthrie. The gentlelady's time has expired and yields
back. The gentleman from New York is recognized for 5 minutes.
Mr. Tonko. Thank you, Mr. Chair. I thank you and our
Ranking Member Eshoo for the opportunity to waive on. I thank
you for including the National Plan to End Parkinson's Act as a
part of this hearing. In Congress, I have made helping those
with neurological disorders one of my top priorities. I have
long led efforts related to the other top neurological disorder
facing Americans, which is Alzheimer's. I am proud to expand my
championship to facing Parkinson's as well.
Currently, more than 1 million people in the U.S. live with
Parkinson's disease, and there are no treatments to cure,
prevent, or significantly slow down its progression.
Parkinson's is the second-most common neurological disease and
is fortunately--unfortunately growing, and growing fast. Nearly
60,000 Americans are diagnosed every year, and the disease is
estimated to cost the U.S. $52 billion annually. With the
number of Americans diagnosed with Parkinson's disease expected
to increase as the population ages, the cost to the U.S.
economy is also expected to balloon to nearly $80 billion every
year by 2037.
I thank my good friend and colleague, Gus Bilirakis, for
working on the National Plan to End Parkinson's Act with me. It
is an honor to work with him on this, and I know how much it
means to him personally, and I thank him for the relentless
work as we work together to push this forward.
Our bipartisan, no-cost legislation will for the first time
unite the Federal Government in a mission to cure and prevent
Parkinson's, alleviate financial and health burdens on American
families, and reduce government spending over time. This
pioneering legislation is greatly needed.
I also thank Mr. George Manahan for joining us here today--
--
Mr. Manahan. Sure.
Mr. Tonko [continuing]. And bravely sharing your journey
with Parkinson's. By speaking here today, you do give a face to
Parkinson's. As Mr. Manahan noted, we all know someone with
this devastating disease. I first learned about Parkinson's
from a friend who suffered with it, and recently my good friend
and colleague, Congresswoman Jennifer Wexton, was diagnosed
with Parkinson's. I thank the Congresswoman for showing another
face of Parkinson's and bravely sharing publicly her journey.
With that in mind, I would like to share a brief message
from Congresswoman Wexton, and I quote: ``As many of you know,
earlier this year on World Parkinson's Disease Day, I shared
that I myself have been diagnosed with Parkinson's disease, or
PD. Over the past several months, I have been touched by the
hundreds of messages of appreciation and hope that I have
received from people who suffer from PD, but even more often
from their loved ones and caregivers.
``A diagnosis of Parkinson's disease affects not only those
of us who suffer from the disease itself but all of the many
people in our lives who love us and want us to be well again.
Parkinson's is the fastest growing brain disease worldwide and
is estimated to affect at least 14 million people by 2040. PD
is a progressive neurodegenerative disease, and although there
are things we can do to slow its progression, at this time
there is no cure.
``Eventually, many of us who have Parkinson's will be
unable to walk, talk, or even feed ourselves. We will require
extensive and expensive institutional or in-home care, the cost
of which will likely be borne primarily by U.S. taxpayers.
Research has shown that, although heritability is a factor, PD
is largely caused by environmental toxins and it can therefore
be prevented if adequate precautions are taken.
``In addition, great strides are being made to identify
genetic markers of Parkinson's, which we believe will lead to
identifying variations of PD that will allow researchers to
develop targeted treatments that will help alleviate symptoms
and improve quality of life for those with the disease and slow
or even halt its progression. By bringing together key
stakeholders to build the national plan to prevent and cure
Parkinson's, this bill is taking a critical and historic step
for the millions of Americans with Parkinson's and their
families just like mine. I urge you to advance this critical
bipartisan legislation.''
And I end there with Jennifer's quote. I could not agree
more. I understand that receiving a Parkinson's diagnosis is
truly devastating for individuals and their loved ones. It is
incumbent upon Congress to ensure Americans know they will be
supported during this frightening and life-altering time. Our
legislation does just that. My hope is that this bill, when
signed into law, will do for Parkinson's what national plan did
for Alzheimer's and bring together coordination, care, and
research all to help those with Parkinson's as well as their
loved ones.
So to Mr. Manahan, I again thank you and ask, what would
this legislation mean for those living with Parkinson's, and
what about their families and their friends?
Mr. Manahan. It would give us hope. And really we haven't
had hope until just recently. We have found a biomarker which
can detect Parkinson's disease at a very early stage. So, you
know, for those people who are left who have Parkinson's, this
would give us hope that we can find a solution working together
hand in hand.
Mr. Tonko. And I would think the investment and
coordination factors of the legislation would provide for more
effective treatments.
Mr. Manahan. Yes.
Mr. Guthrie. Thank you.
Mr. Tonko. With that, I yield back.
Mr. Guthrie. Thank you. The gentleman----
Voice. [Indiscernible.]
Mr. Guthrie. Thank you. Absolutely. The gentleman yields
back. The Chair now recognizes Ms. Barragan from California for
5 minutes.
Ms. Barragan. Thank you, Mr. Chairman. I want to echo some
of my colleagues' comments about the importance of the
Children's Graduate Medical Education Program and how critical
it is. I was recently in my congressional district where I had
an opportunity to meet with the Long Beach Memorial Care to
hear about the importance that it has and why we need to
continue to support it and fund it.
I am highly disappointed in my colleagues across the aisle
who are basically holding this bill hostage and this funding
hostage by, you know, putting in provisions that are just
unacceptable, and so it is really unfortunate, and I just
wanted to echo that concern that we continue to work to get
this funded and taking out some of these harmful provisions.
I want to kind of follow up on my colleague, Representative
Tonko. Mr. Manahan, I found your testimony to be very powerful,
particularly on your optimism that we can develop a national
plan to end Parkinson's disease. I agree we need to use every
available resource to fight Parkinson's disease. It is costing
patients their lives and significantly increasing our
healthcare costs with an estimated $52 billion in direct and
indirect costs to society. And now that we have an accurate
biomarker that can detect Parkinson's disease before the first
symptoms appear, innovation is urgently needed to find a cure.
Now, as my colleague said, we all know somebody who has
Parkinson's. My father had Parkinson's for most of my youth. My
father died when I was 23 years old, and for most of my memory
he was shaking and I would have to sit next to him and hold his
hand or try to hold his arms because I wanted the shaking to
stop. I didn't know any better, I was a kid, and he and I, we
watched baseball games together.
And so it has been a personal issue for me and something I
know we need to continue to champion. That is why I am a strong
supporter of H.R. 2365, the National Plan to End Parkinson's
Act, which will create an advisory council to prevent and cure
Parkinson's.
In your testimony you speak about the lack of services
available for people with Parkinson's. How can the Federal
Government support efforts to build out a stronger public
health and caregiving infrastructure to support patients and
families living with Parkinson's disease?
Mr. Manahan. Well, it is interesting you mention that
because, you know, unlike Alzheimer's, we don't have
Parkinson's services on a State-by State basis. So when I was
diagnosed, I didn't know anybody with Parkinson's and there was
no support groups, so we started those in West Virginia. We
started a 5K that raised money for the Michael J. Fox
Foundation, we raised $500,000. We have support groups, free
exercise classes. So we did it ourselves. But there has to be a
way that State by State there has to be some continuity of care
and continuity of support.
Ms. Barragan. Right. Well, thank you for your advocacy, for
starting the support group. When I was--I remember when Michael
J. Fox came out with his diagnosis, I thought, you know, oh,
this is going to be some hope, there is going to be a
foundation that is going to invest in this. But certainly they
can't do it alone, and so it is critical that Congress also
help out. And so I want to thank my colleagues who are working
on that issue.
I want to turn to maternal health. Dr. Cherot, would you
please explain how maternal mortality review committees align
and/or collaborate with perinatal quality collaboratives to
identify opportunities to prevent pregnancy-related deaths?
Dr. Cherot. Sure, happy to. And I would say the California
PRQ is a big success story, especially around preterm birth,
and March of Dimes has been collaborating with them for some
time.
Fundamentally, the PQCs do the work. And so what they do
are--State or multistate, what they tend to do is to--are their
networks that improve quality and outcomes. So they have
multiple stakeholders, whether it is clinicians, hospitals,
communities that work together and fundamentally take what the
MM--the recommendations from the committees that--I can't--now
I am so tired by the end of the day--MMRCs, they take that and
fundamentally drive the best outcomes, right. So they take the
data, turn around and say, ``This is what we would recommend''
and do the hard work.
Ms. Barragan. Great, thank you so much.
With that, I yield back.
Mr. Guthrie. Thank you. Thank you so much. And so many of
us have families come tell their stories to us, and it is so
powerful to hear stories, and thanks for sharing because it--we
have--Congress is made up of America, and so we have the same
stories, and so this is important to do.
Well, thanks. That has concluded all of our Members and
people who have waived on that would like to ask questions.
Thanks for your testimony and your willingness to sit here so
long and answer so many questions. And it is important and it
informs our work, and we really appreciate the opportunity for
all of you to be here today.
To do a little committee business, we have a list of--and
actually, Representative Wexton's statement was read from, but
she had submitted that for the record too, so it is part of it
as well.
But I ask unanimous consent to insert in the record the
documents included on the staff hearing documents list that
have been reviewed by both sides.
Seeing no objection, that will be an order.
[The information appears at the conclusion of the hearing.]
Mr. Guthrie. Again, and thanks so much. And there will be
other questions. I know you all sat here for a long time. There
could be other----
Ms. Eshoo. Chairman.
Mr. Guthrie [continuing]. Questions that Members could
submit.
Ms. Eshoo. May I just add something?
Mr. Guthrie. Yes. Yes.
Ms. Eshoo. Yes. I would just like to--Mr. Manahan, you are
the only one that I didn't get to speak to. Thank you. Thank
you to each one of you. Whether I agree or disagree, this is an
important place, it is the People's House.
And, Mr. Manahan, I want to add to your envelope of hope
because the Congress did in the last session toward the end of
the session pass legislation creating a new, very small, limber
agency that is designed to take on the death sentences of
diseases, and Parkinson's is one of them. So I want you to know
that, you know, there are a lot of Members that poured their
hearts and souls into that, understanding, you know, that if it
is pancreatic cancer, it is a death sentence, if it is
Parkinson's, if it is, you know, the cancers.
So I just want to--I wanted to share that with you.
Mr. Manahan. Thank you, Congresswoman.
Ms. Eshoo. So thank you for being here. You are very
courageous.
Mr. Manahan. Thank you.
Ms. Eshoo. You are very courageous.
And, Kevin, I am going to write the question to you. I
can't believe that we did legislation, it became law, and the
CDC didn't do a damn thing with it for almost 5 years, and now
we are reauthorizing it. Go figure.
Mr. Guthrie. We're going to----
Ms. Eshoo. Ladies, thank you.
Mr. Guthrie [continuing]. Have oversight of that, I can
guarantee you that.
Ms. Eshoo. Yes. Yes, good.
Mr. Guthrie. Thank you so much.
Ms. Eshoo. OK.
Mr. Guthrie. So I appreciate it. But I--there will be
written questions. I will remind all the Members that they have
10 business days to submit questions for the record, and I ask
the witnesses to respond promptly. Members should submit their
questions by the close of business on June 28th.
Again, thank you for your patience. We appreciate you being
here. And the subcommittee is adjourned.
[Whereupon, at 2:00 p.m., the subcommittee was adjourned.]
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