[House Hearing, 116 Congress]
[From the U.S. Government Publishing Office]
LEGISLATION TO IMPROVE AMERICANS'
HEALTHCARE COVERAGE AND OUTCOMES
=======================================================================
HEARING
BEFORE THE
SUBCOMMITTEE ON HEALTH
OF THE
COMMITTEE ON ENERGY AND COMMERCE
HOUSE OF REPRESENTATIVES
ONE HUNDRED SIXTEENTH CONGRESS
SECOND SESSION
__________
JANUARY 8, 2020
__________
Serial No. 116-85
[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]
Printed for the use of the Committee on Energy and Commerce
govinfo.gov/committee/house-energy
energycommerce.house.gov
__________
U.S. GOVERNMENT PUBLISHING OFFICE
44-684 PDF WASHINGTON : 2022
-----------------------------------------------------------------------------------
COMMITTEE ON ENERGY AND COMMERCE
FRANK PALLONE, Jr., New Jersey
Chairman
BOBBY L. RUSH, Illinois GREG WALDEN, Oregon
ANNA G. ESHOO, California Ranking Member
ELIOT L. ENGEL, New York FRED UPTON, Michigan
DIANA DeGETTE, Colorado JOHN SHIMKUS, Illinois
MIKE DOYLE, Pennsylvania MICHAEL C. BURGESS, Texas
JAN SCHAKOWSKY, Illinois STEVE SCALISE, Louisiana
G. K. BUTTERFIELD, North Carolina ROBERT E. LATTA, Ohio
DORIS O. MATSUI, California CATHY McMORRIS RODGERS, Washington
KATHY CASTOR, Florida BRETT GUTHRIE, Kentucky
JOHN P. SARBANES, Maryland PETE OLSON, Texas
JERRY McNERNEY, California DAVID B. McKINLEY, West Virginia
PETER WELCH, Vermont ADAM KINZINGER, Illinois
BEN RAY LUJAN, New Mexico H. MORGAN GRIFFITH, Virginia
PAUL TONKO, New York GUS M. BILIRAKIS, Florida
YVETTE D. CLARKE, New York, Vice BILL JOHNSON, Ohio
Chair BILLY LONG, Missouri
DAVID LOEBSACK, Iowa LARRY BUCSHON, Indiana
KURT SCHRADER, Oregon BILL FLORES, Texas
JOSEPH P. KENNEDY III, SUSAN W. BROOKS, Indiana
Massachusetts MARKWAYNE MULLIN, Oklahoma
TONY CARDENAS, California RICHARD HUDSON, North Carolina
RAUL RUIZ, California TIM WALBERG, Michigan
SCOTT H. PETERS, California EARL L. ``BUDDY'' CARTER, Georgia
DEBBIE DINGELL, Michigan JEFF DUNCAN, South Carolina
MARC A. VEASEY, Texas GREG GIANFORTE, Montana
ANN M. KUSTER, New Hampshire
ROBIN L. KELLY, Illinois
NANETTE DIAZ BARRAGAN, California
A. DONALD McEACHIN, Virginia
LISA BLUNT ROCHESTER, Delaware
DARREN SOTO, Florida
TOM O'HALLERAN, Arizona
------
Professional Staff
JEFFREY C. CARROLL, Staff Director
TIFFANY GUARASCIO, Deputy Staff Director
MIKE BLOOMQUIST, Minority Staff Director
Subcommittee on Health
ANNA G. ESHOO, California
Chairwoman
ELIOT L. ENGEL, New York MICHAEL C. BURGESS, Texas
G. K. BUTTERFIELD, North Carolina, Ranking Member
Vice Chair FRED UPTON, Michigan
DORIS O. MATSUI, California JOHN SHIMKUS, Illinois
KATHY CASTOR, Florida BRETT GUTHRIE, Kentucky
JOHN P. SARBANES, Maryland H. MORGAN GRIFFITH, Virginia
BEN RAY LUJAN, New Mexico GUS M. BILIRAKIS, Florida
KURT SCHRADER, Oregon BILLY LONG, Missouri
JOSEPH P. KENNEDY III, LARRY BUCSHON, Indiana
Massachusetts SUSAN W. BROOKS, Indiana
TONY CARDENAS, California MARKWAYNE MULLIN, Oklahoma
PETER WELCH, Vermont RICHARD HUDSON, North Carolina
RAUL RUIZ, California EARL L. ``BUDDY'' CARTER, Georgia
DEBBIE DINGELL, Michigan GREG GIANFORTE, Montana
ANN M. KUSTER, New Hampshire GREG WALDEN, Oregon (ex officio)
ROBIN L. KELLY, Illinois
NANETTE DIAZ BARRAGAN, California
LISA BLUNT ROCHESTER, Delaware
BOBBY L. RUSH, Illinois
FRANK PALLONE, Jr., New Jersey (ex
officio)
C O N T E N T S
----------
Page
Hon. Anna G. Eshoo, a Representative in Congress from the State
of California, opening statement............................... 1
Prepared statement........................................... 3
Hon. Michael C. Burgess, a Representative in Congress from the
State of Texas, opening statement.............................. 4
Prepared statement........................................... 6
Hon. Frank Pallone, Jr., a Representative in Congress from the
State of New Jersey, opening statement......................... 7
Prepared statement........................................... 8
Hon. Greg Walden, a Representative in Congress from the State of
Oregon, opening statement...................................... 9
Prepared statement........................................... 11
Witnesses
Stephanie Zarecky, Mother of Scarlett Pauley, and Ambassador
Program and Public Relations Manager, SUDC Foundation.......... 13
Prepared statement........................................... 16
Lee Beers, M.D., President-Elect, American Academy of Pediatrics. 17
Prepared statement........................................... 19
Answers to submitted questions............................... 202
Kenneth Mendez, President and Chief Executive Officer, Asthma and
Allergy Foundation of America.................................. 26
Prepared statement........................................... 28
Answers to submitted questions............................... 205
Matthew Cooper, M.D., Director, Kidney and Pancreas
Transplantation, MedStar Georgetown Transplant Initiative...... 68
Prepared statement........................................... 71
Kevin G. Koser, Patient Advocate, on behalf of the National
Foundation for Ectodermal Dysplasias........................... 74
Prepared statement........................................... 77
Frederic Riccardi, President, Medicare Rights Center............. 93
Prepared statement........................................... 95
Answers to submitted questions............................... 211
Submitted Material
H.R. 1379, the Ensuring Lasting Smiles Act \1\
H.R. 2271, the Scarlett's Sunshine on Sudden Unexpected Death Act
\1\
H.R. 2468, the School-Based Allergies and Asthma Management
Program Act \1\
H.R. 2477, the Beneficiary Enrollment Notification and
Eligibility Simplification (BENES) Act of 2019 \1\
H.R. 3935, the Protecting Patients Transportation to Care Act \1\
H.R. 4801, the Healthy Start Reauthorization Act of 2019 \1\
H.R. 5534, the Comprehensive Immunosuppressive Drug Coverage for
Kidney Transplant Patients Act \1\
Letter from Garrett Johnson, Assistant Professor, Questrom School
of Business, Boston University, and Megan Greenfield, Partner,
McKinsey & Company, to Mr. Kennedy, submitted by Mr. Kennedy... 126
----------
\1\ Text of the proposed legislation has been retained in committee
files and also is available at https://docs.house.gov/Committee/
Calendar/ByEvent.aspx?EventID=110355.
Letter of January 8, 2020, from Kendra Copanas, Executive
Director, Generate Health, to Mr. Carter, submitted by Mr.
Carter......................................................... 127
Letter of January 7, 2020, from Angel Love Miles, Healthcare/Home
and Community Based Services Policy Analyst, and Adam Ballard,
Housing and Transportation Policy Analyst, Access Living of
Metropolitan Chicago, to Mr. Carter, submitted by Mr. Carter... 129
Letter of January 8, 2020, from Alison Weir, Policy Advocate,
Greater Harford Legal Aid, et al., to Mr. Carter, submitted by
Mr. Carter..................................................... 131
Letter of January 7, 2020, from Judy Danielson, Community Leader,
Together Colorado, to Mr. Carter, submitted by Mr. Carter...... 133
Letter of January 8, 2020, from Maggie Gomez, Deputy Director,
Center for Health Progress, to Mr. Carter, submitted by Mr.
Carter......................................................... 135
Letter of January 7, 2020, from Sarah Meek, Senior Director of
Legislative Affairs, American Network of Community Options &
Resources, to Mr. Carter, submitted by Mr. Carter.............. 137
Letter of January 7, 2020, from Emily Stewart, Executive
Director, Community Catalyst, to Mr. Carter, submitted by Mr.
Carter......................................................... 139
Letter of January 8, 2020, from Laura Colbert, Executive
Director, Georgians for a Healthy Future, to Mr. Carter,
submitted by Mr. Carter........................................ 141
Statement of the National Kidney Foundation, January 8, 2020,
submitted by Ms. Eshoo......................................... 143
Letter of January 6, 2020, from Chad P. Gehani, President, and
Kathleen T. O'Loughlin, Executive Director, American Dental
Association, to Ms. Eshoo and Mr. Burgess, submitted by Ms.
Eshoo.......................................................... 146
Letter of January 3, 2020, from Lynn Jeffers, President, American
Society of Plastic Surgeons, to Ms. Eshoo and Mr. Burgess,
submitted by Ms. Eshoo......................................... 148
Letter of January 8, 2020, from Mary R. Grealy, President,
Healthcare Leadership Council, to Mr. Pallone and Mr. Walden,
submitted by Ms. Eshoo......................................... 149
Letter of January 7, 2020, from Stacey D. Stewart, President and
Chief Executive Officer, March of Dimes, to Ms. Eshoo and Mr.
Burgess, submitted by Ms. Eshoo................................ 151
Testimony of John Kahan, President, Aaron Matthews SIDS Research
Guild of Seattle Children's, January 8, 2020, submitted by Ms.
Eshoo.......................................................... 153
Letter of January 6, 2020, from Lisa Gable, Chief Executive
Officer, Food Allergy Research and Education, to Hon. Steny
Hoyer and Hon. Phil Roe, submitted by Ms. Eshoo................ 157
Testimony of American Academy of Allergy, Asthma and Immunology,
January 8, 2020, submitted by Ms. Eshoo........................ 159
Letter of August 22, 2016, from Leonard D. Schaeffer,
Administrator, Health Care Financing Administration (1978-
1980), et al., to Hon. Orrin Hatch, Chairman, Senate Committee
on Finance, et al., submitted by Ms. Eshoo..................... 163
List of Supporters of the Beneficiary Enrollment Notication and
Eligibility Simplification (BENES) Act (S. 1280/H.R. 2477),
December 13, 2019, submitted by Ms. Eshoo...................... 165
Letter of December 16, 2019, from ADAPT, et al., to Senate
Majority Leader Mitch McConnell, et al., submitted by Ms. Eshoo 168
Statement of the Medicare Rights Center, ``Congress Must
Streamline and Simplify Medicare Enrollment,'' submitted by Ms.
Eshoo.......................................................... 172
Article of October 26, 2018, ``Why You Shouldn't Wait to Sign Up
for Medicare Part B,'' by Paula Span, The New York Times,
submitted by Ms. Eshoo......................................... 175
Article of December 12, 2019, ``Medicare Enrollment Can Be
Confusing and Lead toUnexpected Costs,'' by Anne Tergesen, The
Wall Street Journal, submitted by Ms. Eshoo.................... 177
Statement of January 8, 2020, by Hon. Tim Ryan, et al., submitted
by Ms. Eshoo................................................... 182
Letter of October 17, 2017, from Hon. Sanford D. Bishop, Jr., et
al., to Mr. Walden and Mr. Pallone, submitted by Ms. Eshoo..... 184
Letter of February 15, 2019, from Hon. Sanford D. Bishop, Jr., et
al., to Hon. Rosa L. DeLauro and Hon. Tom Cole, submitted by
Ms. Eshoo...................................................... 186
List of Organizations Supporting H.R. 3935, submitted by Ms.
Eshoo.......................................................... 191
Report, ``Non-Emergency Medical Transportation: Findings from a
Return on Investment Study,'' by Michael Adelberg, et al.,
submitted by Ms. Eshoo......................................... 193
Statement of CVS Health, January 8, 2020, submitted by Ms. Eshoo. 198
Letter of January 8, 2020, from Medhat Askar, President, American
Society for Histocompatability & Immunogenetics, to Ms. Eshoo
and Mr. Burgess, submitted by Ms. Eshoo........................ 199
Letter of January 8, 2020, from Hon. Denver Riggleman to Ms.
Eshoo and Mr. Burgess, submitted by Ms. Eshoo.................. 200
LEGISLATION TO IMPROVE AMERICANS' HEALTHCARE COVERAGE AND OUTCOMES
----------
WEDNESDAY, JANUARY 8, 2020
House of Representatives,
Subcommittee on Health,
Committee on Energy and Commerce,
Washington, DC.
The subcommittee met, pursuant to call, at 10:04 a.m., in
room 2322, Rayburn House Office Building, Hon. Anna G. Eshoo
(chairwoman of the subcommittee) presiding.
Members present: Representatives Eshoo, Engel, Matsui,
Sarbanes, Schrader, Kennedy, Cardenas, Welch, Ruiz, Dingell,
Kuster, Kelly, Barragan, Blunt Rochester, Pallone (ex officio),
Burgess (subcommittee ranking member), Upton, Shimkus, Guthrie,
Griffith, Bilirakis, Long, Bucshon, Brooks, Mullin, Hudson,
Carter, Gianforte, and Walden (ex officio).
Also present: Representatives Doyle and Soto.
Staff present: Austin Flack, Staff Assistant; Waverly
Gordon, Deputy Chief Counsel; Stephen Holland, Health Counsel;
Saha Khaterzai, Professional Staff Member; Zachary Keita,
Intern; Aisling McDonough, Policy Coordinator; Meghan Mullon,
Staff Assistant; Samantha Satchell, Professional Staff Member;
Kimberlee Trzeciak, Chief Health Advisor; Rick Van Buren,
Health Counsel; Madison Wendell, Intern; C. J. Young, Press
Secretary; Nolan Ahern, Minority Professional Staff Member,
Health; S. K. Brown, Minority Press Assistant; William
Clutterbuck, Minority Staff Assistant; Tyler Greenberg,
Minority Staff Assistant; J. P. Paluskiewizc, Minority Chief
Counsel, Health; Brannon Rains, Minority Legislative Clerk; and
Kristen Shatynski, Minority Professional Staff Member, Health.
Ms. Eshoo. Good morning, everyone.
The Subcommittee on Health will now come to order. I just
want to note that we will be recessing the hearing for an all-
Member classified briefing today on Iran and Iraq at 1:00, so,
if needed, we will return and continue the hearing once the
briefing is complete.
The Chair now recognizes herself for 5 minutes for an
opening statement.
OPENING STATEMENT OF HON. ANNA G. ESHOO, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF CALIFORNIA
I want to welcome our witnesses and thank them for being
here, and the Chair wishes all of the members, everyone that is
in the room, those that are here to observe, a blessed new year
to each one of you and to your families.
Last year, our subcommittee was remarkably productive. We
held 19 hearings and passed 31 bills, all of which had some
bipartisan support, and today we will continue that progress by
examining seven bipartisan bills to improve Americans'
healthcare and coverage.
Our first panel will deal with three bills, important
bills, that aim to prevent the single greatest tragedy a family
can experience: the death of a child. Among developed nations,
the United States has one of the highest infant mortality
rates. For every 1,000 live births in our country, nearly 6
babies will not live to see their first birthday.
The Healthy Start Reauthorization Act of 2019 introduced by
Representatives Tim Ryan and Anthony Gonzalez invests $135
million annually to improve birth outcomes in high-risk
communities by providing services to women and families before,
during, and after pregnancy. The Healthy Start program has been
proven to reduce rates of low birth weights, preterm births,
and prenatal opioid exposure.
We will also consider the Scarlett's Sunshine on Sudden
Unexpected Death Act introduced by Representatives Gwen Moore
and Tom Cole. We are honored today to have with us Scarlett's
mother, Stephanie Zarecky. A warm welcome to you, Ms. Zarecky.
This is what I would consider an unimaginably difficult day
for you because it is the third anniversary of Scarlett's
unexplained death, so we are very grateful to you, and know
that you are surrounded by a full room of people that care
deeply about this and that you are here to inform us, and we
will pay close attention to what you instruct us relative to
action.
No family should suffer the death of a child without
knowing why, yet over 400 children and 3,600 infants die each
year from unexplained causes. We will honor these children
today by considering the Scarlett's Sunshine Act, which
provides funding to improve data collection and death scene
investigations related to unexpected deaths and promotes safe
sleep practices.
The third bill is the School-Based Allergies and Asthma
Management Program Act introduced by Representatives Steny
Hoyer and David Roe. Children should be able to go to school
feeling secure that their school can handle an asthma attack or
an allergic reaction. This is not the case today. The
legislation preferentially awards children's asthma treatment
grants to States whose public schools have plans for managing
asthma--I like the sound; that is all right, let them fuss; it
sounds good--for managing asthma and allergy triggers in
emergencies.
With our second panel, we are going to consider four bills
that close damaging gaps in health insurance coverage. The
first is the Comprehensive Immunosuppressive Drug Coverage for
Kidney Transplant Patient Act--mouthful, that is a mouthful--
introduced by Representatives Ron Kind and our own Dr. Burgess.
While Medicare covers a lifetime of dialysis, kidney
transplant recipients currently lose their Medicare coverage 36
months after transplant. It doesn't make sense. Without
Medicare coverage for needed immunosuppressive drugs,
transplant patients risk losing their new kidney. The
legislation closes that gap by continuing coverage for kidney
transplant recipients, which a nonpartisan HHS analysis found
would save 375 kidney transplants each year.
The Ensuring Lasting Smiles Act, introduced by
Representatives Collin Peterson and Denver Riggleman, requires
health plans to cover medically necessary dental services
related to a patient's congenital anomaly. About 4 percent of
children in the United States are born with congenital
anomalies such as cleft palate, and health plans systematically
delay claims for dental-related procedures to treat them. This
practice leaves families in debt from high out-of-pocket costs
despite their paying for their health insurance that really
should cover medically necessary procedures.
And the final two bills reform core pieces of the Medicare
and Medicaid programs. And I am not going to go into them, but
the Protecting Patients Transportation Care Act was introduced
by Buddy Carter--two members of this subcommittee, Buddy Carter
and Tony Cardenas. And we will have an excellent conversation
about that, because Medicaid's coverage of transportation to
health services is a lifeline for patients, especially those
that live in rural or underserved areas.
And the final bill, introduced by Representatives Raul Ruiz
and Jackie Walorski, updates the Part B enrollment process for
the first time in 50 years.
So today's hearing, I would say, is bursting with
commonsense legislation that will improve the health and the
care for every American from the youngest to the oldest, and I
am proud to help advance these bills and continue our record of
bipartisan productivity in the new year.
[The prepared statement of Ms. Eshoo follows:] \1\
---------------------------------------------------------------------------
\1\ Text of the proposed legislation has been retained in committee
files and also is available at https://docs.house.gov/Committee/
Calendar/ByEvent.aspx?EventID=110355.
---------------------------------------------------------------------------
Prepared Statement of Hon. Anna G. Eshoo
Good morning and welcome to the Health Subcommittee's first
hearing of the new year.
Last year, our subcommittee was remarkably productive. We
held 19 hearings and passed 31 bills, all of which had some
sort of bipartisan support.
Today, we will continue that progress by examining seven
bipartisan bills to improve Americans' healthcare and coverage.
Our first panel will deal with three bills that aim to
prevent the single greatest tragedy a family can experience--
the death of a child.
Among developed nations, the U.S. has one of the highest
infant mortality rates. For every 1,000 live births in the
United States, nearly 6 babies will not live to see their first
birthday.
The Healthy Start Reauthorization Act of 2019 introduced by
Representatives Tim Ryan and Anthony Gonzalez invests $135
million annually to improve birth outcomes in high-risk
communities by providing services to women and families before,
during, and after pregnancy.
The Healthy Start program has been proven to reduce rates
of low birth weights, preterm births, and prenatal opioid
exposure.
We will also consider the Scarlett's Sunshine on Sudden
Unexpected Death Act introduced by Representatives Gwen Moore
and Tom Cole.
We're honored to hear testimony from Scarlett's mother,
Stephanie Zarecky. Thank you, Ms. Zarecky, for joining us on an
unimaginably difficult day for you--the third anniversary of
Scarlett's unexplained death.
No family should suffer the death of a child without
knowing why, yet over 400 children and 3,600 infants die each
year from unexplained causes.
We will honor these children today by considering the
Scarlett's Sunshine Act, which provides funding to improve data
collection and death scene investigations related to unexpected
deaths and promotes safe sleep practices.
The third bill is the School-Based Allergies and Asthma
Management Program Act introduced by Representatives Steny
Hoyer and David Roe.
Children should be able to go to school feeling secure that
their school can handle an asthma attack or an allergic
reaction. This is not the case today.
This legislation preferentially awards children's asthma
treatment grants to States whose public schools have plans for
managing asthma and allergy triggers and emergencies.
With our second panel, we will consider four bills that
close damaging gaps in health insurance coverage.
I'm proud to be an original cosponsor on the first bill,
the Comprehensive Immunosuppressive Drug Coverage for Kidney
Transplant Patient Act introduced by Representative Ron Kind
and Dr. Michael Burgess.
While Medicare covers a lifetime of dialysis, kidney
transplant recipients currently lose their Medicare coverage 36
months after transplant. Without Medicare coverage for needed
immunosuppressive drugs, transplant patients risk losing their
new kidney.
The legislation closes that gap by continuing coverage for
kidney transplant recipients, which a nonpartisan HHS analysis
found would save 375 kidney transplants each year.
The Ensuring Lasting Smiles Act introduced by
Representatives Collin Peterson and Denver Rigglemen requires
health plans to cover medically necessary dental services
related to a patient's congenital anomaly.
About 4 percent of children in the U.S. are born with
congenital anomalies such as cleft palate, and health plans
systematically delay claims for dental-related procedures to
treat them.
This practice leaves families in debt from high out-of-
pocket costs despite their paying for health insurance that
should cover medically necessary procedures.
Our final two bills reform core pieces of the Medicare and
Medicaid programs.
The Protecting Patients Transportation to Care Act
introduced by Representatives Buddy Carter and Tony Cardenas
requires States to offer a nonemergency medical transportation
benefit. Our committee also heard from Representative Sanford
Bishop about this legislation during our Members Day panel.
Medicaid's coverage of transportation to health services is
a lifeline for patients, especially those who live in rural or
underserved areas.
Finally, the BENES Act introduced by Representatives Raul
Ruiz and Jackie Walorski updates the Part B enrollment process
for the first time in 50 years.
It requires Medicare to notify people nearing eligibility
about their rights and responsibilities, protecting
beneficiaries from a lifetime of financial penalties for
failure to enroll promptly.
Today's hearing is bursting with commonsense legislation
that will improve the health and care for every American, from
the youngest to the oldest among us.
I'm proud to advance these bills and to continue our record
of bipartisan productivity in the new year.
Ms. Eshoo. The Chair now recognizes the ranking member of
our subcommittee for 5 minutes for his opening statement, Dr.
Michael Burgess.
OPENING STATEMENT OF HON. MICHAEL C. BURGESS, A REPRESENTATIVE
IN CONGRESS FROM THE STATE OF TEXAS
Mr. Burgess. And I thank the Chair, and we are considering
seven bills this morning. We might call them the Magnificent
Seven since they are the first bills to be considered in our
health subcommittee this year. And these are bills designed to
provide access to medical services or medicines for different
American patients.
I am appreciative of the inclusion of H.R. 5534, the
Comprehensive Immunosuppressive Drug Coverage for Kidney
Transplant Patients Act of 2019. This is something where I have
worked for nearly 10 years to try to effect. Congress enacted
legislation in 1972 to allow certain individuals with end-stage
renal disease to be covered under Medicare. It was the first
time that individuals under the age of 65 became eligible to
enroll in Medicare because of a medical condition.
Medicare beneficiaries with end-stage renal disease are
about 1 percent of the total Medicare enrollment, but they are
7 percent of Medicare spending. These patients are incredibly
ill. They often have numerous other costly chronic conditions.
A kidney transplant is an investment that the Government
makes into the patient's future. Medicare pays for the
patient's kidney transplant if they have this end-stage renal
disease benefit, and that transplant should be a solid
investment in the future health of that patient. Unfortunately,
that investment is lost, and the patient's health will take a
turn for the worst, if they cannot get their immunosuppressive
drugs and then ultimately reject the kidney transplant. We
should protect that investment.
Currently, Medicare covers only immunosuppressive drugs for
36 months. However, these patients require these
immunosuppressives for the rest of their lives. H.R. 5534
directly addresses that problem by extending Medicare coverage
of immunosuppressive drugs past 36 months for patients who do
not obtain health coverage elsewhere. This is a policy that has
the support from patients and transplant surgeons, and it is
something the kidney community has been behind for years.
In July, I attended the launch of President Trump's
Advancing American Kidney Health Initiative, which aims to
improve care and foster innovation to benefit kidney patients
across the country. This policy, H.R. 5534, aligns with the
goals of the administration. In fact, both the Centers for
Medicare and Medicaid Services Office of the Actuary and the
Office of the Assistant Secretary for Planning and Evaluation
at Health and Human Services have published reports on the
benefits of extending Medicare coverage for immunosuppressive
drugs, which includes financial savings for the Medicare
program.
There is momentum. We can make a difference in the lives of
kidney patients, and H.R. 5534 is a critical component of that
effort as it will improve patient adherence to an
immunosuppressive regimen and help ensure that patients can
maintain their transplant and avoid future kidney-related
complications.
Other bills are part of this hearing, and they include
efforts to improve access to different types of care. For
example, Representative Carter's bill, H.R. 3935, would
continue the requirement that State Medicaid programs provide
coverage of nonemergency transportation to medically necessary
services.
Other bills such as H.R. 2477, the BENES Act, are well
intentioned, and we want our health system working better for
individuals, but we also know from the Congressional Budget
Office that this particular bill comes with a significant cost.
People may avoid late enrollment penalties, but we want to make
sure that, in trying to ease enrollment, we do not harm the
integrity of the enrollment processes.
H.R. 2271, the Scarlett's Sunshine on Sudden Unexpected
Death Act, aims to improve the investigation of sudden
unexpected deaths amongst infants and children. This bill has a
goal similar to that of the Preventing Maternal Deaths Act,
which was signed into law in the last Congress, and that would
help States equip themselves to identify and address the causes
of these tragedies.
H.R. 4801 will reauthorize the Healthy Start Program at the
Health Resources and Services Administration, and it is also
imperative in improving health outcomes for American mothers
and children.
On the topic of children's health, 2468, the School-Based
Allergies and Asthma Management Program Act, would equip
schools to better handle asthma and allergies among students.
Ten percent of children have asthma. Our schools must be better
prepared to handle that growing population.
So, Madam Chair, I am glad we are looking at these bills
today, and we had an agreement to consider them all before the
subcommittee, and I hope other bills that we requested to be
part of this hearing are soon under consideration.
I want to thank all of our witnesses for being here today
and sharing their information with us, and I will yield back.
[The prepared statement of Mr. Burgess follows:]
Prepared Statement of Hon. Michael C. Burgess
Thank you, Madame Chair. Today we are considering seven
bills that will help provide access to medical services or
medicines for different American patients. I am most
appreciative of the inclusion of H.R. 5534, the Comprehensive
Immunosuppressive Drug Coverage for Kidney Transplant Patients
Act of 2019, a policy that I have championed for nearly a
decade.
Congress enacted legislation in 1972 to allow certain
individuals with end-stage renal disease (ESRD) in Medicare,
which was the first time that individuals under age 65 became
eligible to enroll in Medicare because of a medical condition.
Medicare beneficiaries with ESRD account for roughly 7 percent
of Medicare fee-for-service spending, but only make up 1
percent of total Medicare enrollment. These patients are
incredibly ill and often have numerous other costly chronic
conditions.
A kidney transplant is an investment that the Government
makes into the patient's future. Medicare pays for the
patient's kidney transplant if they have the ESRD benefit, and
that transplant should be a solid investment in the future
health of that patient. Unfortunately, that investment is lost
and the patient's health takes a turn for the worse if they
cannot get their immunosuppressive drugs and reject their
kidney transplant. We should protect that investment.
Currently, Medicare only covers immunosuppressive drugs for
36 months; however, these patients require these drugs for the
rest of their lives. H.R. 5534 directly addresses that problem
by extending Medicare coverage of immunosuppressive drugs past
36 months for patients that do not obtain healthcare coverage
elsewhere.
This is a policy that has the support from everyone from
patients to transplant surgeons, and it is something that the
kidney community has coalesced behind for years. In July, I
attended the launch of President Trump's ``Advancing American
Kidney Health'' Initiative, which aims to improve care and
foster innovation to benefit kidney patients across the
country. My policy, H.R. 5534, aligns with the goals of the
administration. In fact, both the CMS Office of the Actuary and
the Office of the Assistant Secretary for Planning and
Evaluation at HHS have published reports on the benefits of
extending Medicare coverage of immunosuppressive drugs, which
include financial savings for the Medicare program.
There is momentum to make a difference in the lives of
kidney patients, and H.R. 5534 is a critical component of this
effort as it will improve patient adherence to
immunosuppressive drugs and help to ensure that patients can
maintain their transplant and hopefully avoid future kidney-
related health care complications.
The other bills that are part of this hearing include
efforts to improve patient access to different types of care.
For example, Rep. Buddy Carter's bill, H.R. 3935, would
continue the requirement that State Medicaid programs provide
coverage of nonemergency transportation to medically necessary
services. Other bills, such as H.R. 2477, the BENES Act, are
well intentioned and we want our healthcare system to work
better for individuals, but we know from the Congressional
Budget Office that this particular bill has a cost. People may
avoid late enrollment penalties, but we want to make sure that
in trying to ease enrollment we do not harm the integrity of
the enrollment process.
H.R. 2271, the Scarlett's Sunshine on Sudden Unexpected
Death Act, aims to improve the investigation of sudden
unexpected deaths among infants and children.
This bill has a goal similar to that of the Preventing
Maternal Deaths Act, which was signed into law in December
2018, and would help States equip themselves to identify and
address the causes of these tragedies. H.R. 4801, which would
reauthorize the Healthy Start program at the Health Resources
and Services Administration, is also imperative in improving
healthcare outcomes for American mothers and children.
On the topic of children's health, H.R. 2468, the School-
Based Allergies and Asthma Management Program Act, would equip
schools to better handle asthma and allergies among students.
According to the Centers for Disease Control and Prevention, 10
percent of children have asthma. Our schools must be prepared
to handle that growing population so that children will be safe
in school.
I am glad that we are looking at these bills today, as we
had an agreement to consider them all before the subcommittee,
but I do hope that the other bills we requested be a part of
this hearing are considered soon. Thank you for all our
witnesses for being here today, and I look forward to the
discussion.
Ms. Eshoo. The gentleman yields back. I have the fullest
intention to break our first-year record, so I look forward to
more and more bills being heard, taken up, acted upon.
It is a pleasure to recognize the chairman of the full
committee, Mr. Pallone, for his opening statement for 5
minutes.
OPENING STATEMENT OF HON. FRANK PALLONE, Jr., A REPRESENTATIVE
IN CONGRESS FROM THE STATE OF NEW JERSEY
Mr. Pallone. Thank you, Madam Chair.
Today, the Health Subcommittee continues its bipartisan
work to improve health outcomes and healthcare coverage. Our
first panel will examine three bills to improve health outcomes
for babies and children.
The first bill, H.R. 2271, the Scarlett's Sunshine on
Sudden Unexpected Death Act, will improve investigations, data
collection, surveillance, and research into sudden unexpected
infant death and sudden unexpected death in childhood. It also
includes critical support for families who face these
unimaginable tragedies. As the author of the Sudden Unexpected
Death Data Enhancement and Awareness Act, which was signed into
law by President Obama in 2014, I have long supported this
cause, and I am glad we are taking further steps today.
The subcommittee will also examine H.R. 4801, the Healthy
Start Reauthorization Act, which will enhance programs that
support perinatal health, reduce infant mortality, and improve
long-term health outcomes. Despite serving communities that
have much higher rates of infant mortality, Healthy Start
grantees have shown their ability to bring their community's
overall infant mortality rate below the national average,
demonstrating the program's success and the need to expand and
strengthen it.
In rounding out the first panel, the subcommittee will
review H.R. 2468, the School-Based Allergies and Asthma
Management Program Act, a bill that will provide incentives for
schools to help prevent and treat asthma and allergy-related
emergencies.
Now, our second panel will examine four bills that improve
health insurance coverage. H.R. 2477, the BENES Act, will
provide individuals approaching Medicare eligibility with
critical information about the Medicare enrollment process.
This commonsense notice will empower people to make better
choices about their healthcare coverage and avoid costly
lifetime late enrollment penalties, and it will also eliminate
harmful gaps in Medicare coverage.
We will also discuss H.R. 5534, the Comprehensive
Immunosuppressive Drug Coverage for Kidney Transplant Patients
Act. This bill removes the 36-month limit on Medicare coverage
of immunosuppressive drugs after a kidney transplant surgery.
Those who are fortunate enough to receive the kidney transplant
rely on this medication for the rest of their lives, so it is
important that Medicare offers the coverage necessary to
protect the incredible gift of life that a transplant brings.
We also discuss H.R. 1379, the Ensuring Lasting Smiles Act,
which requires all individual and group market health plans to
cover medically necessary treatment resulting from congenital
abnormalities. About 3 percent of American children are born
with congenital abnormalities or birth defects that affect the
way they look, develop, or function, and often for the rest of
their lives.
So these children require serious medical treatment that is
often not covered by health plans either because it is deemed
cosmetic or because the treatment involves dental services.
However, this treatment is critically important and medically
necessary, particularly for children with serious dental
anomalies.
Our witness today, Kevin Koser, will tell us about his
family's longstanding struggles to get his son Kannon's medical
treatment covered, and H.R. 1379 would ensure that children
like Kannon get the treatment they need.
And finally, we will consider H.R. 3935, the Protecting
Patients Transportation to Care Act, which will ensure that
some of the most vulnerable Americans will continue to be able
to access the care they need through Medicaid regardless of
where they live.
These bills make important strides to improving health
outcomes and health coverage. I agree with Chairwoman Eshoo,
who said that these are--this is a group of very commonsense,
rational proposals, and I look forward to the witnesses'
testimony. Thank you, Madam Chair, and I yield back.
[The prepared statement of Mr. Pallone follows:]
Prepared Statement of Hon. Frank Pallone, Jr.
Today, the Health Subcommittee continues its bipartisan
work to improve health outcomes and healthcare coverage.
Our first panel will examine three bills to improve health
outcomes for babies and children. The first bill, H.R. 2271,
the Scarlett's Sunshine on Sudden Unexpected Death Act, will
improve investigations, data collection, surveillance, and
research into sudden unexpected infant death and sudden
unexpected death in childhood. It also includes critical
support for families who face these unimaginable tragedies. As
the author of the Sudden Unexpected Death Data Enhancement and
Awareness Act, which was signed into law by President Obama in
2014, I have long supported this cause, and I am glad we are
taking further steps today.
The subcommittee will also examine H.R. 4801, the Healthy
Start Reauthorization Act, which will enhance programs that
support perinatal health, reduce infant mortality, and improve
long-term health outcomes. Despite serving communities that
have had much higher rates of infant mortality, Healthy Start
grantees have shown their ability to bring their communities'
overall infant mortality rate below the national average,
demonstrating the program's success and the need to expand and
strengthen it.
Rounding out the first panel, the subcommittee will review
H.R. 2468, the School-Based Allergies and Asthma Management
Program Act, a bill that will provide incentives for schools to
help prevent and treat asthma- and allergy-related emergencies.
On our second panel we will examine four bills that improve
health insurance coverage. H.R. 2477, the BENES Act, will
provide individuals approaching Medicare eligibility with
critical information about the Medicare enrollment process.
This commonsense notice will empower people to make better
choices about their health care coverage and avoid costly,
lifetime late enrollment penalties. It will also eliminate
harmful gaps in Medicare coverage.
We will also discuss H.R. 5534, the Comprehensive
Immunosuppressive Drug Coverage for Kidney Transplant Patients
Act. This bill removes the 36-month limit on Medicare coverage
of immunosuppressive drugs after a kidney transplant surgery.
Those who are fortunate enough to receive a kidney transplant
rely on this medication for the rest of their lives, so it's
important that Medicare offers the coverage necessary to
protect the incredible gift of life a transplant brings.
We will also discuss H.R. 1379, the Ensuring Lasting Smiles
Act, which requires all individual and group market health
plans to cover medically necessary treatment resulting from
congenital abnormalities. About 3 percent of American children
are born with congenital abnormalities or birth defects that
affect the way they look, develop, or function, often for the
rest of their lives.
These children require serious medical treatment that is
often not covered by health plans, either because it is deemed
``cosmetic,'' or because the treatment involves dental
services. However, this treatment is critically important and
medically necessary, particularly for children with serious
dental anomalies. Our witness today, Kevin Koser, will tell us
about his family's longstanding struggles to get his son
Kannon's medical treatment covered. H.R. 1379 would ensure that
children like Kannon get the treatment they need.
We will also consider H.R. 3935, the Protecting Patients
Transportation to Care Act, which will ensure that some of the
most vulnerable Americans will continue to be able to access
the care they need, through Medicaid, regardless of where they
live.
These bills make important strides to improve health
outcomes and health coverage. I look forward to the witnesses'
testimony and now yield the remainder of my time.
Ms. Eshoo. The gentleman yields back.
It is a pleasure to recognize the ranking member of the
full committee, our friend from Oregon, Mr. Walden, for his 5
minutes.
OPENING STATEMENT OF HON. GREG WALDEN, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF OREGON
Mr. Walden. Thank you, Madam Chair, and welcome to everyone
in the new year, and a good group of bills before us today in
our first hearing of the new year.
As you know, at today's hearing, we will have the
opportunity to review initiatives intended to advance public
health and wellness in children as well as other proposals
affecting the Medicare and Medicaid programs.
H.R. 2271, the Scarlett's Sunshine on Sudden Unexpected
Death Act, works to improve current efforts to further
understand both sudden unexplained infant death and sudden
unexplained death in childhood.
I would like to thank Stephanie Zarecky for being here
today, the mother of Scarlett for whom the bill is named, for
being here to share Scarlett's story. It is really important.
Circumstances surrounding these unfortunate tragedies are
oftentimes not fully understood, which makes determining the
causes of sudden deaths of infants and children very
challenging. H.R. 2271, as you know, would improve the
comprehensiveness and standardization of child infant death
investigations.
As someone who has lost a child, I can't imagine the added
heartache of a child's death being without any explanation. My
hope is this legislation will find answers to those questions,
and more importantly, prevent deaths in the future.
In addition to H.R. 2271, we will review H.R. 4801, the
Healthy Start Reauthorization Act, which reauthorizes grants to
State and local organizations to provide services and support
that reduce infant mortality and improve pregnancy outcomes.
We will also review H.R. 2468. That is the School-Based
Allergy and Asthma Management Program Act. This bill authorizes
the Department of Health and Human Services in making asthma-
related grants to give preferences to a State with
comprehensive school-based allergy and asthma management
programs and include on-site personnel trained in the
administration of allergy and asthma rescue medications.
We will also review H.R. 1379, the Ensuring Lasting Smiles
Act, which will ensure that children with congenital anomalies
have their medically necessary treatment covered by private
insurance. Last year, I met with Dr. Keith Krueger, a surgeon
in central Oregon, about this issue and heard the frustrations
of his patients and their parents who had to fight too hard
just to get the treatment covered.
So I think my colleagues on both sides of the aisle would
agree that the language in this bill could be improved to avoid
any unintended consequences, but I do believe we should fix
this issue and give patients the peace of mind that their care
will be covered.
We will also review H.R. 3935. That is the Protecting
Patients Transportation to Care Act, which codifies in statute
the nonemergency medical transportation benefits for the
States, which has the odd distinction of being a mandatory
benefit that is not in the statute but instead established
through regulation.
So I am glad we are having a hearing on this bill, as it is
critical we hear from States and communities served by this
benefit as to how it is working and what value it brings to the
Medicaid program.
Next, there is H.R. 2477, the BENES Act, which seeks to
better align enrollment under Medicare Part B. The bill also
seeks to provide more outreach to those eligible for Medicare
Part B to sign up as soon as an individual is eligible and
attempts to mitigate enrollment penalties for those who do not
sign up in time.
The version of the bill we are considering today and what
has been reported out of Ways and Means are both improvements
over previously introduced versions, and I look forward to
negotiating the language if the majority chooses to proceed
with the markup, Madam Chair.
Finally, we will review H.R. 5534, which Dr. Burgess has
championed for years. It is a great example of how Medicare
rules can be nonsensical--not what he has championed, but what
he wants to fix. Individuals who have received a kidney
transplant require immunosuppressive drugs for the rest of
their life in order to minimize the risk of their immune system
rejecting the kidney.
Unfortunately, Medicare currently only provides payment for
immunosuppressive drugs for 3 years, while providing coverage
for a lifetime of dialysis treatments. So Medicare will
currently pay for dialysis, pay for a transplant, pay for the
drugs for 3 years, and then stop paying, so patients are more
likely to lose their transplanted kidney, and then guess what,
Medicare goes back to paying for dialysis, will pay for a new
transplant and 3 more years of drug coverage.
Extending immunosuppressive drug coverage for the lifetime
of kidney patients is a cost-effective way for the Federal
Government to improve clinical outcomes for those with end-
stage renal disease. Despite decades of legislative efforts and
supporting clinical data, extending coverage for
immunosuppressive drugs has not been passed into law. Though I
am pleased we are reviewing this bill today, hopefully, we can
change that in this year.
So together these are really important pieces of
legislation, Madam Chair, and I look forward to hearing from
our witnesses and working with you going into the new year.
And also, just as a note, I have to go down to the other
subcommittee. We have two subcommittees meeting simultaneously.
So some of us you will see come and go.
And so thanks for having this important hearing today, and
I yield back the balance of my time.
[The prepared statement of Mr. Walden follows:]
Prepared Statement of Hon. Greg Walden
At today's hearing, we will have the opportunity to review
initiatives intended to advance public health and wellness in
children as well as other proposals affecting the Medicare and
Medicaid programs
H.R. 2271, the Scarlett's Sunshine on Sudden Unexpected
Death Act, works to improve current efforts to further
understand both sudden unexplained infant death (SUID) and
sudden unexplained death in childhood (SUDC). I'd like to thank
Stephanie Zarecky, the mother of Scarlett Pauley, who the bill
is named after, for being here today to share Scarlett's story.
The circumstances surrounding these unfortunate tragedies are
oftentimes not fully understood, which makes determining the
causes of sudden deaths of infants and children very
challenging. H.R. 2271 would improve the comprehensiveness and
standardization of child and infant death investigations. As
someone who has lost a child, I can't imagine the added
heartache of a child's death being without any explanation. My
hope is this legislation will help us find those answers and
prevent those deaths in the future.
In addition to H.R. 2271, we will review H.R. 4801, the
Healthy Start Reauthorization Act, which reauthorizes grants to
State and local organizations to provide services and supports
that reduce infant mortality and improve pregnancy outcomes.
We will also review H.R. 2468, the School-Based Allergies
and Asthma Management Program Act. This bill authorizes the
Department of Health and Human Services in making asthma-
related grants to give preference to a State with comprehensive
school-based allergy and asthma management programs that
include on-site personnel trained in the administration of
allergy and asthma rescue medications.
We will also review H.R. 1379, the Ensuring Lasting Smiles
Act, which would ensure children with congenital anomalies have
their medically necessary treatment covered by private health
insurance. Last year I met with Dr. Keith Krueger, a surgeon in
central Oregon, about this issue and heard the frustrations of
his patients--and their parents--who had to fight too hard just
to get their treatment covered. I think my colleagues on both
sides of the aisle would agree that the language in this bill
could be improved to avoid any unintended consequences, but I
do believe we should fix this issue and give patients the peace
of mind that their care will be covered.
We will also review H.R. 3935, the Protecting Patients
Transportation to Care Act, which codifies in statute the
Nonemergency Medical Transportation benefit for States, which
has the odd distinction of being a mandatory benefit that is
not in the statute but instead established through regulation.
I am glad that we are having a hearing on this bill as it is
critical that we hear from States and the communities served by
the this benefit as to how it is working and what value it
brings to the Medicaid program.
Next, there is H.R. 2477, the BENES Act, which seeks to
better align enrollment under Medicare Part B. The bill also
seeks to provide more outreach to those eligible for Medicare
Part B to sign up as soon as an individual is eligible and
attempts to mitigate enrollment penalties for those who do not
sign up in time. The version of the bill we are considering
today and what has been reported out of Ways and Means are both
improvements over previously introduced versions and I look
forward to negotiating the language if the majority chooses to
proceed to a markup.
Finally, we will review H.R. 5534, which Dr. Burgess has
championed for years and is a great example of how Medicare
rules can be nonsensical. Individuals who have received a
kidney transplant require immunosuppressive drugs for the rest
of their life in order to minimize the risk of their immune
system rejecting the kidney. Unfortunately, Medicare currently
only provides payment for immunosuppressive drugs for 3 years
while providing coverage for a lifetime of dialysis treatments.
So, Medicare will currently pay for dialysis, pay for a
transplant, pay for the drugs for 3 years and then stop paying
so patients are more likely to lose their transplanted kidney
and then guess what? Medicare goes back to paying for dialysis,
will pay for a new transplant and then 3 more years of drug
coverage.
Extending immunosuppressive drug coverage for the lifetime
of kidney patients is a cost-effective way for the Federal
Government to improve clinical outcomes for those with End-
Stage Renal Disease. Despite decades of legislative efforts and
supporting clinical data, extending coverage for
immunosuppressive drugs has not been passed into law. But I am
pleased we are reviewing this bill today and hopefully we can
change that this year.
Taken together these bills demonstrate this committee's
commitment to addressing improved health outcomes in children
and Medicare beneficiaries, and I look forward to hearing from
our witnesses on these initiatives.
Ms. Eshoo. Thank you. The gentleman yields back.
The Chair reminds Members that, pursuant to committee
rules, all Members' written openings statements shall be made
part of the record.
Now I would like to introduce our witnesses for our first
panel. First, our collective thanks to each one of you. Ms.
Stephanie Zarecky, she is the mother of Scarlett Pauley and the
public relations manager of the SUDC Foundation. Welcome to
you. Thank you very much.
Dr. Lee Beers is president-elect of the American Academy of
Pediatrics. Welcome to you. It is lovely to see you.
And Mr. Kenneth Mendez, it is great to see you, president
and CEO of the Asthma and Allergy Foundation of America.
So we are all grateful for your testimony today. We look
forward to hearing it. I think you are all familiar with the
lights. Maybe Ms. Zarecky isn't, but green is go, yellow means
red is coming up, and then we stop, OK.
So let me call on Ms. Zarecky first. You are recognized.
You have 5 minutes, and we look forward to hearing your
testimony.
And again, we are really indebted to you for traveling to
us. And, as I said in my opening statement, this is a tough
day, but just think of how you are optimizing your time and
instructing us so that others hopefully will not have to bear
the sorrow that you have. So you are recognized for 5 minutes.
STATEMENTS OF STEPHANIE ZARECKY, MOTHER OF SCARLETT PAULEY, AND
AMBASSADOR PROGRAM AND PUBLIC RELATIONS MANAGER, SUDC
FOUNDATION; LEE BEERS, M.D., PRESIDENT-ELECT, AMERICAN ACADEMY
OF PEDIATRICS; AND KENNETH MENDEZ, PRESIDENT AND CHIEF
EXECUTIVE OFFICER, ASTHMA AND ALLERGY FOUNDATION OF AMERICA
STATEMENT OF STEPHANIE ZARECKY
Ms. Zarecky. Thank you. I thank the committee for inviting
me today. I also thank Representatives Moore, Herrera Beutler,
and Cole for introducing Scarlett's Sunshine Unexpected Death
Act in the House of Representatives and Senators Casey and
Isakson for their leadership in the Senate. I know this issue
is one that the chairman and Ms. Moore in particular have cared
about and worked on for many years.
As grateful as I am, I hope you will understand why I wish
I weren't here. This legislation is named after my daughter
Scarlett Lillian Pauley, and I am here because she cannot be.
Today is the third anniversary of the worst day of my life, the
day when the girl you see with big blue eyes and an angelic
face left this Earth when she was just 16 months old. Scarlett
lit up the world from the moment she entered it. She loved to
read. Her favorite book was ``Barnyard Dance!'' by Sandra
Boynton. Her face would light up when I would read it to her as
she sat on my lap and my husband, Ryan, would do a dance that
matched each line.
Scarlett also loved music. Her favorite song was ``You Are
My Sunshine'' which is the inspiration for the legislation's
name.
Scarlett loved to smile. She was known for her serious
face, which led many to think she didn't like them, but we
always knew it was just because she was studying them. Once she
learned how much she loved to smile and to make others smile,
Scarlett was never happy until she could get everyone around
her smiling.
Scarlett loved life and made the most of her short one.
January 7, 2017, Scarlett came down with a mild cold and had a
slightly elevated temperature. Three years and approximately 16
hours ago, Scarlett enjoyed her bath and a final performance of
``Barnyard Dance!'' I nursed her to sleep, gave her warm cheeks
some final kisses and put her in her crib. Three years and 11
hours ago, I checked on her, as parents often do, before
heading to bed. I opened the door to her room, expecting to
hear the sweet noises of her sleeping peacefully.
If you have children, I am sure you remember holding your
breath waiting for your child to take their next one. If it
took a bit too long, your heart would sink into your stomach
until you heard that next sweet inhale and your heart bounced
back to your chest. Three years and approximately 11 hours ago,
that next breath never came for Scarlett.
The next hour is a blur of EMTs, police officers,
ambulances, sitting on the bathroom floor praying to God for a
miracle, a police car ride to the hospital, and being escorted
into a room of doctors and nurses, one of whom I recall wiped
away tears as we entered.
Three years and 10 hours ago, a doctor told us there was
nothing more they could do and my Scarlett, the very reason for
every beat of my heart and every breath I took, was gone.
To this day, we do not know what took Scarlett from us. We
agonized for 5 months and 6 days waiting for the results of her
autopsy. Even participating in research being conducted at New
York University on deaths like Scarlett's did not give us
answers as to why she is not here. Scarlett's death is
considered sudden unexplained death in childhood, or SUDC. SUDC
is a category of death in children between the ages of 1 and 18
that remains unexplained after a thorough investigation,
including an autopsy.
At this time, we do not know what causes SUDC, how to
predict it, or how to prevent it. Since losing Scarlett, we
have been blessed with our second daughter, Eliana. She is the
one making the noise in the back. Because we don't know what
happened to Scarlett, we live every day in fear we will lose
Eliana as well. We also don't know that it won't happen to your
children or grandchildren.
According to the Centers for Disease Control and
Prevention, SUDC occurs in about 400 children in the U.S. each
year, but because of the lack of a specific way to record
sudden and unexplained deaths in children that have been
thoroughly investigated, it is impossible to know how
widespread the problem is. And there are more than 3,600
infants lost annually to sudden unexpected infant death, or
SUID, which is the sudden death of an infant under 1 year of
age that when first discovered did not have an obvious cause.
Research into the potential causes of SUDC and SUID is
desperately needed. Facilitating and standardizing data
collection and analysis, as this legislation seeks to do, is an
essential step in one day preventing these tragedies. Losing a
child is the single greatest pain we could ever imagine, and to
be without answers as to why magnifies it exponentially.
We read parenting books, followed all recommended safe
sleep guidelines, and made sure Scarlett received good medical
care. Yet we still lost our healthy, thriving, precious baby
girl. It is an unimaginable tragedy no parent should have to
live with, and there are thousands of us who do it every day.
We have done far too little for far too long to try to stop
these tragedies. We have to change that in memory of all the
children who are deeply loved and dearly missed, and for the
future of all children.
Scarlett's Sunshine on Unexpected Death Act will help us
take steps to solve this medical mystery and prevent future
deaths, and I thank the committee for their support of it.
[The prepared statement of Ms. Zarecky follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Ms. Eshoo. We thank you. I want to recognize our colleague,
Congressman Mike Doyle, that is here. Ms. Zarecky is
represented by Congressman Doyle, and the reason that he hasn't
spoken up yet is because he is not a member of our
subcommittee.
We have these funny rules around here, but he will be
recognized, but it is after members of the committee are--we
finish recognizing them, but we welcome Congressman Doyle to
the subcommittee and for your testimony.
I now would like to recognize Dr. Lee Beers. Again, the
president-elect of the American Academy of Pediatrics. Welcome
to you, and you have 5 minutes for your testimony.
STATEMENT OF LEE BEERS, M.D.
Dr. Beers. Wonderful. Good morning, Chairwoman Eshoo,
Ranking Member Burgess, and members of the subcommittee. My
name is Dr. Lee Beers, and I am a pediatrician and president-
elect of the American Academy of Pediatrics.
First, thank you, Ms. Zarecky, for your powerful testimony.
I am here today officially representing the AAP, a
nonprofit professional medical organization of over 67,000
pediatricians, pediatric medical subspecialists, and pediatric
surgical specialists.
Thank you for holding this hearing today on a number of
bills to improve health outcomes. Today I will speak to two of
them, the Scarlett's Sunshine on Sudden Unexpected Death Act
and the Healthy Start Reauthorization Act. The AAP strongly
supports both pieces of legislation. Together, these bills will
help reduce infant mortality, prevent sudden unexpected infant
and child death, and promote healthy child development.
I will first discuss opportunities to address sleep-related
infant deaths and other unexplained child deaths through the
AAP-endorsed Scarlett's Sunshine on Sudden Unexpected Death
Act.
In the 1990s AAP recommended that babies sleep on their
back and partnered with government agencies on a successful
Back to Sleep campaign. These efforts initially led to a
substantial declined in sudden unexplained infant deaths.
However, we have seen little progress in over a decade, and
persistent racial and ethnic disparities remain.
To make additional progress, we need better information on
the circumstances surrounding sleep-related death and other
unexplained child death and to better promote what we already
know about keeping children safe.
Scarlett's Sunshine would help improve and standardize
death scene investigations and autopsies and would provide
training on best practices. In addition, the bill would expand
the vital work of child death review teams. It would help
promote evidence-based, safe infant sleep, including providing
safe sleep products like cribs and play yards to low-income
families.
Finally, the bill would authorize funding for parent
support services like grief and bereavement counseling. I
vividly remember the first time I consoled a grieving father in
the emergency department after losing his infant son to a
sleep-related death. The lack of answers or services for this
family left me feeling helpless and angry.
Scarlett's Sunshine would help us better understand and
prevent these and similar tragedies while better supporting
affected families. I urge the committee to advance this
legislation as written.
I also thank the committee for advancing the Safe Sleep for
Babies Act, which would ban dangerous inclined sleepers and
crib bumpers. The full House passed that bill last year, and we
urge the Senate to pass it without delay.
The AAP also strongly supports the Healthy Start
Reauthorization Act of 2019. In the United States, the infant
mortality rate fell by 14 percent between 2007 and 2017.
Healthy Start has played a critical role in this success by
working to ensure that women living in communities with higher
than average infant mortality rates have access to early
prenatal, post partum, and infant care.
However, despite a declining infant mortality rate
nationally, significant inequities persist in infant birth
outcomes. In fact, infants born to non-Hispanic Black, Native
American, Alaskan Native, and Pacific Islander mothers all
experience higher than average rates of mortality.
Maternal mortality is also a serious ongoing crisis in the
United States. According to the CDC, the national rate of
maternal mortality has more than doubled since 1987.
Alarmingly, Black women, Native Americans, and Alaska Natives
are 2 to 3 times more likely to experience pregnancy-related
deaths regardless of socioeconomic status.
These staggering statistics on maternal health and infant
mortality illustrate the importance of reauthorizing Healthy
Start. As a pediatrician right here in Washington, DC, I have
seen firsthand the need for and the positive impact of programs
like Healthy Start.
Mothers, infants, and families greatly benefit from the
connection to resources that may not otherwise be available to
them, including healthcare services like prenatal care,
enabling services like case management, and public health
services such as immunizations.
The Healthy Start Program has positively impacted families
and communities throughout the United States and here in DC.
For instance, in 2015, Healthy Start reduced infant mortality
rates among program participants compared to the national rate.
Despite its success, this program has not been renewed since
2013.
The Healthy Start Reauthorization Act of 2019 would not
only reauthorize this essential program for 5 years, it also
makes key updates, including explicit consideration of social
determinants of health. We know that negative social influences
can impact physical health, social, emotional development, and
educational achievement throughout the life span.
Healthy Start is a much-needed program that works in
reducing preterm birth, infant mortality, and maternal
mortality. We urge its swift reauthorization.
Thank you for the opportunity to be here today, and I look
forward to answering any questions you may have.
[The prepared statement of Dr. Beers follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Ms. Eshoo. Thank you, Dr. Beers. I think you would be
pleased to know that the subcommittee has addressed the issue
of maternal mortality rates in our country, and that
legislation now awaits the full committee.
It is a pleasure to--the floor. I am sorry. Big difference
between the two. But we are on our way on that one. It is just
a horrible statistic, shameful statistic in our country.
It is a pleasure to recognize Mr. Mendez for 5 minutes for
your testimony. Welcome again and thank you.
STATEMENT OF KENNETH MENDEZ
Mr. Mendez. Thank you, Chairwoman Eshoo, Ranking Member
Burgess, and members of the committee. I am Kenneth Mendez,
president and CEO of the Asthma and Allergy Foundation of
America, or AAFA. AAFA is the leading patient organization for
Americans with asthma and allergies and the oldest asthma and
allergy patient group in the world.
Thank you for inviting me to offer testimony in support of
2468, the School-Based Allergies and Asthma Management Program
Act.
This bipartisan bill is an important step in promoting
health and even preventing death for the millions of American
children living with asthma and with food allergies. First, I
would like to give you some perspective on American children
living with asthma and food allergies, and then I would like to
tell you how this bill helps.
One in 13 American children have asthma. One in 13 have
food allergies. This means that every school in the U.S. is
likely to have children with these conditions. Imagine
breathing through a straw filled with cotton and the fear you
would feel knowing you weren't getting enough air to breathe.
That is what it is like to have asthma.
About 3,600 people die every year from asthma in the U.S.
For example, just last month, we heard about a 13-year-old
Broadway star, Laurel Griggs, dying of an asthma attack. No one
needs to die from asthma.
Here are some more statistics. Asthma is the most common
chronic disease among children and major cause of childhood
disability. Asthma is more common among children from low-
income families and among Black and Hispanic children.
Childhood asthma is one of the top reasons for missed school
days, close to 13.8 million missed school days, and substantial
economic costs through lost work days for caregivers.
Now, imagine having a life-threatening food allergy where
accidental exposure to a known food allergen can trigger an
allergic reaction that could kill you if you don't have life-
saving epinephrine administered in the first few minutes of the
reaction. That is what it is like to live with food allergies.
Food allergy deaths are relatively rare but are tragic and
often preventable. Food allergy prevalence among children,
along with related emergency department visits, have increased
sharply over the past two decades. Food allergy prevalence
among children increased by 50 percent, with peanut allergies
more than tripling.
Schools can help by preparing to address emergency
situations, promoting awareness among teachers and staff, and
providing a safe and healthy school environment that minimizes
asthma and allergy triggers.
AAFA issues a State honor roll looking at asthma and
allergy policies related to schools. We have seen a great deal
of progress over the years in many areas, with 15 States on our
2019 honor roll compared to 8 in 2013.
However, there are still too many gaps. For example, only
27 States require schools to have emergency protocols for
asthma and only 36 require emergency protocols for anaphylaxis.
Only 24 States require schools to maintain allergy and asthma
incidents reports. Only 12 require indoor air quality
management plans, and only 8 accept acceptable minimum
standards for nurse-to-school ratios.
H.R. 2468 would help address these gaps by creating a
grant-making preference in CDC's existing asthma grants program
for those States that require all public secondary and
elementary schools to have certain key measures in place as
part of a comprehensive school-based allergy and asthma
management program.
The bill has support from a number of major stakeholder
organizations, including AAFA, the two major allergy, asthma,
and immunology doctor organizations, the National Association
of School Nurses, and other nonprofit patient organizations in
the asthma and allergy community.
This bill is important because both asthma and food
allergies present serious threats to health and children's
learning, as well as posing enormous economic burdens on
families and on the healthcare system.
This bill will help children be safe, healthy, and ready to
learn. AAFA is grateful for the subcommittee's consideration of
the bill, and we stand ready to help the committee in any way.
[The prepared statement of Mr. Mendez follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Ms. Eshoo. Thank you very much for your testimony to each
of the witnesses, and now we will move to--that we have
concluded the witnesses' testimony, I will recognize myself for
5 minutes of questions.
I will start with Ms. Zarecky. Again, thank you for being
here today. What do you think is the single most important
thing Congress can do to address sudden unexplained deaths of
infants and children?
Ms. Zarecky. For me personally, research is very badly
needed. Sudden unexplained death in childhood, which is what
happened to Scarlett, research is absolutely critical, and we
can't do good research unless we have good data, which is what
the legislation seeks to accomplish. It is a terrible medical
tragedy, and we--families need more answers, and research is
just so badly needed into why it happens.
Ms. Eshoo. Is there any--I am familiar with what the bill
does, but is there any research being conducted today, and if
so, where, by whom?
Ms. Zarecky. Sure. Yes. So we participated in research
being done out of New York University. It is the Sudden
Unexplained Death and Childhood Registry and Research
Collaborative. And my understanding is there is also research
being done at Seattle Children's and Boston as well, Boston
Children's Hospital, although I am less familiar with that. But
there is limited amount of research being conducted already.
Ms. Eshoo. And in the aftermath of Scarlett's death, can
you describe to us what was available or what was not available
to you given that probably one of the darkest chapters--darkest
chapter of your life?
Ms. Zarecky. Yes. I mean, the Sudden Unexplained Death in
Childhood Foundation has been a lifeline to our family. They
have provided not only emotional support, they have allowed us
to be connected with other families who have experienced this
tragedy.
When something like this happens to you, you think you are
the only one that it has ever happened to. So being able to be
connected with other families has been critical, but also being
able to have support in terms of having someone who can make a
phone call to the medical examiner's office. I can't tell you
how impossible even dialing that phone number is at times.
And even just to ask, you know, after a little while, when
is my daughter's autopsy going to be done, having that support
not only from an emotional standpoint but also just, you know,
logistical things that you never really think of until, you
know, you have lost a child, has been--has been really
critical.
Ms. Eshoo. And the legislation covers what you just pointed
out?
Ms. Zarecky. It mostly covers data collection and so that
we can support research and figure out what happened to these
children.
Ms. Eshoo. OK. Dr. Beers--thank you--the United States, you
said, is the most dangerous place in the developed world to
deliver a baby. I can't believe that that is a statistic next
to the two words ``United States,'' but that is our challenge,
and we need to meet the challenge.
Each year, 700 American women die and 50,000 women are
severely injured due to complications related to child birth.
For African-American women in the United States, it is even
more dangerous because they are three times more likely to die
from childbirth than White women.
In ProPublica's reporting, it found that, quote, ``the
American medical system is focused more on fetal and infant
safety and survival than on the mother's health and well
being.'' Do you agree with that finding?
Dr. Beers. I don't know that it is focused more on that,
but I would say that we need a much greater and more intense
focus on maternal health and on access to high-quality,
accessible and culturally sensitive----
Ms. Eshoo. We really shouldn't be pitting one against the
other.
Dr. Beers. Correct.
Ms. Eshoo. It is not a race to the bottom.
Dr. Beers. And healthy mothers and healthy families
engender healthy babies.
Ms. Eshoo. Now, do you have recommendations on how the
Healthy Start Program--and you gave it very good scores, which
I like hearing--how it could improve maternal health while also
helping infants?
Dr. Beers. Yes. Absolutely. I think a couple of the areas
where Healthy Start really helps improve maternal health--I
think, one, the services are really targeted to areas where
there are higher rates of infant mortality, which are often
coexistent with higher rates of maternal mortality as well.
The services Healthy Start provides are very individualized
and targeted to the individual mother and really do help
address some of the social determinants. When we look at
maternal mortality rates and infant mortality rates, a
significant contributor to those are social influences and
social determinants.
Ms. Eshoo. Well, do you think the program is doing enough
to address racial disparities in maternal and infant health,
and if not, what more should be done?
Dr. Beers. I think there is always more we can do. When we
look at the data and the evidence, we see these tremendous
disparities. We see the tremendous disparities in race and
ethnicity regardless of socioeconomic status. And if we see
those numbers, we know we are not doing enough. And so we need
to continue to provide culturally appropriate services. We need
to continue to engage communities and families in developing
solutions and in addition to addressing bias that exists
naturally in healthcare.
Ms. Eshoo. Thank you. Well, I am out of time, so Mr.
Mendez, I will submit my questions to you in writing. And I
know you will respond in a very timely way.
The Chair now recognizes Dr. Burgess, the ranking member of
the subcommittee, for his 5 minutes to ask questions.
Mr. Burgess. And again I thank the chair, thank our
witnesses for being here today. I apologize because some of us
have been in and out, but there is another hearing going on
downstairs. I don't know why the committee leadership chooses
to schedule important hearings on top of each other, but I
guess it happened when we were in charge too, so I won't to be
too critical.
Ms. Eshoo. We can handle it, that is why.
Mr. Burgess. Dr. Beers, in your written testimony, you
talked about that you get a lot of questions related to the
sleep, that they are at the top of any new parent's list when
they come to see me, and the guidance I give parents is
critical to promoting safe practices.
So here you are in the Subcommittee on Health on the
Committee on Energy and Commerce with the vast audience on C-
SPAN that tunes in and hangs on every word that we say. So this
is your opportunity to give that advice very broadly and
recognize it doesn't suffice for advice which you will get from
your own doctor, but in general, what are those recommendations
that you are giving?
Dr. Beers. Right, right. So thank you for that opportunity.
I appreciate that. There are several very important things for
safe sleep. Infants should sleep in their own sleep space--
without blankets, pillows, crib bumpers, other things--on their
backs. And I think those are very important things, in spaces
without exposure to cigarette smoke as well, so----
And I recognize as a pediatrician and as a parent that
sometimes that is difficult because sometimes you have babies
who don't sleep well, sometimes you have babies who are fussy.
You are pretty much always exhausted, and so I recognize that
that is difficult, but it is just critically important.
Mr. Burgess. So that is--is that advice for a newborn, or
is that continue--for some time continue in the baby's life?
Dr. Beers. Well, I think that is a great question. So the
evidence and the research that we know shows that infants are
at risk for sleep-related death up to a year of age, and so
that is relevant up to a year of age. I do think it is
important to note, though, that--and particularly with this
bill--this really does address other instances of sudden
unexplained death in infancy and childhood that may be
unrelated to the situation.
So, to Ms. Zarecky's point about more research being
needed, I think that is a really important point because there
is a lot we don't know, particularly about the older infants
and children.
Mr. Burgess. And that was going to be the point of my
question, to widen the focus of what we are examining, not
ignoring what perhaps may be the more vulnerable population but
not to exclude populations that might also be vulnerable.
I do have to say, Madam Chair, and we, of course, have
worked on issues related to maternal mortality in the last
Congress, this Congress. Last Congress we passed the first
stand-alone bill dealing with maternal mortality that I have
seen in my entire time in Congress. And it got signed into law,
and that is a good thing. We have continued that work in this
Congress, and that is a good thing.
But the hearing we had leading up to the bill that you
referenced, we had Dr. Nelson from Parkland Hospital, where I
did my residency many, many years ago--many, many, many years
ago--and I guess the point for Dr. Nelson's testimony was, here
is a hospital that is basically an inner city hospital, serves
basically a minority population, a low-income population, and
they have very significantly good maternal mortality
statistics.
So the point in all of that is, we know that it can be done
well, and really I hope at some point, we will have some
follow-on discussion where we might identify either the
exposition of best practices or even, I dare say, do we need to
talk about those institutions that are not doing as well?
But I think we owe it to the patient population to be able
to--it is hard to discern, it is hard to know when you are
shopping for a hospital in which to deliver your baby. You
don't basically go into the deep within the statistical part of
it. Maybe that is something that we could look at in the
future.
Mr. Mendez, I do want to say, as someone who has lived with
asthma my entire life, I appreciate your effort on that.
Mr. Mendez. Thank you.
Mr. Burgess. I know there is always more that we could be
doing. I do worry some about things that we might mandate from
this committee because then we always--we tend to drive the
price up of those products that we mandate, and that has been
one of the downsides of some of the work we have done in the
past. But I appreciate what your organization does and your
work----
Mr. Mendez. Thank you.
Mr. Burgess [continuing]. On that.
And Ms. Zarecky, sorry for your loss. I am glad you are
here with us to share your story today. I hope that your
presence here will be of benefit to people who might learn
something from Dr. Beers' instructions that she so wisely gave
us.
Thank you, Madam Chair. I will yield back.
Ms. Eshoo. The gentleman yields back. I would be happy to
do follow-through on what you just raised.
Now, on the heels of the hearing that we had on maternal
mortality, I raised the issue relative to hospitals, and today
the accreditation board now includes what you described, but
there is always more to be done.
But I think that that is a positive step, because there has
to be internal pressure by those that are in charge of and
oversee hospitals so that we can weed out those that--whose
rates are deeply troubling from those that are doing well, and
learn from those that are doing well. So I will continue to
work with you on that.
I now would like to recognize the gentleman from New
Jersey, the chair of the full committee, Mr. Pallone, for his 5
minutes of questions.
Mr. Pallone. Thank you, Madam Chair, and I want to thank
all our witnesses, including Ms. Zarecky, for being here today.
I can't imagine the pain and grief that you had to endure since
losing Scarlett, but I thank you for your courage and for
sharing her story with us, really.
This cause has long been something that I support. In 2014,
President Obama signed into law the Sudden Unexpected Death
Data Enhancement and Awareness Act, a law that I sponsored that
required the Secretary to collect info on sudden unexpected
infant death and sudden unexplained death in childhood, and
educate the public, and collaborate with other agencies and
State and local health departments to provide information for
medical examiners and other individuals.
And, thanks to this law, we now have a more clear vision of
what is known and unknown about sudden unexpected infant death
and sudden unexpected death in childhood. And our focus has to
turn now, how can we take further action to prevent these
tragedies and support families, care providers, and researchers
when these tragedies occur.
One of the provisions of the Scarlett's Sunshine Act would
provide grants for support services for families who have had a
child die, including grief counseling, home visits, and support
groups.
So I wanted to ask you, Ms. Zarecky. No amount of support
can ever replace what you or your family have lost, but can you
tell us how support services can be helpful to families like
yours in working through these tragedies?
Ms. Zarecky. Thank you so much for your question, and thank
you for asking because it actually gives me the opportunity to
focus on one of the strengths of the House bill, and that, of
course, is the support services.
I think, when you have lost a child, there is a before and
there is an after, and once you have crossed that line,
oftentimes there is no greater gift than being able to connect
with another family who really, truly understands. And it is
the support services that we have received through national
foundations as well as local foundations in Pittsburgh.
It has been absolutely critical in being able to live life
after our loss. So, you know, bereavement support for families,
of course, is very critical. It is very badly needed, and I
truly don't know where I would be today if I didn't have the
support of other families who have walked this journey before
me.
And I thank you, Congressman, for your leadership on this
issue and for working on it for many years.
Mr. Pallone. Well, thank you. Let me just turn to Dr. Beers
from a physician's point of view. In your testimony, Doctor,
you discuss the difficulty your team faced when you could not
identify timely and accessible grief counseling for a family
who just lost a child.
As a physician, can you tell us about the appropriate forms
of grief counseling and other support services that should be
made available to families, and how these services can help
support the mental and emotional health of the family?
Dr. Beers. Absolutely. And I think, as you and other
Members know, access to timely and accessible mental health
services is a significant issue across the country, and so--and
grief counseling and grief services are particularly important
for families. When you need them, you need them immediately.
They are not services that you can wait 6, 8, 10 months for.
You need mental health providers who are specifically
trained in addressing grief and bereavement issues. And what
type of services is going to vary a little bit, depending on
the family and their individual desires and needs. For some,
individual therapy may be appropriate, and for others, group
therapy and support groups may be appropriate as well, but
certainly we should make sure that both of those things are
available to families.
Mr. Pallone. I wanted to--thank you. I wanted to ask you
one more question in the time remaining. Another important
provision of the bill supports grants for infant safe sleep and
efforts to decrease risk factors.
You mentioned physicians began recommending positioning
babies on their back for sleep starting in the 1990s. I
remember that. And after which we saw a decrease in cases of
sudden unexpected infant death.
However, as continued tragedies demonstrate, we still have
a lot of work to do. So, in your testimony, you suggested that
we might need to reframe safe sleep recommendations to address
cultural or socioeconomic considerations.
Can you explain what that means and how can we ensure that
all families receive the benefit of these recommendations?
Dr. Beers. Absolutely. And perhaps the best way is to share
a short example. I am close colleagues with a pediatrician and
researcher who does a lot of research in this area, and we used
to work together in Washington, DC, and working with many low-
income families who live in neighborhoods with high community
violence.
And one of the things they learned through their
qualitative research was that many of the families they talked
to were not adhering to the safe sleep recommendations because
they were fearful of people entering into their house or
apartment and wanted their baby very close to them. And they
felt like putting their baby in a crib was taking them too far
away and was putting them at risk because they were living in
unsafe and unstable housing.
And so being able to tailor those recommendations to
address those very specific concerns of bringing the crib very
close to the bed, making sure that you were set up and your
room was set up so that the crib was away from the door, those
things made an enormous difference. But the only way that we
knew that was by asking those questions and really diving into
what a family's specific concerns were.
Mr. Pallone. Thank you.
Thank you, Madam Chair.
Ms. Eshoo. The gentleman yields back. A pleasure to
recognize the gentleman from Michigan, former chairman of the
full committee, Mr. Upton.
Mr. Upton. Well, thank you Madam Chair, and I appreciate
the hearing, and I have asked that my name be added as a
cosponsor to H.R. 2271, so thank you very much for your
testimony.
Dr. Beers, a quick question. Just for new moms, when they
deliver, often in a hospital, I mean, is it the standard
operating procedure to, in fact, make sure that that new mom is
aware of the safe sleep recommendations? I think it is pretty
widespread belief about bumpers and stuffed animals, but
blankets and--I mean, for the first year?
I mean, is there a checklist? I mean, have you--has it been
pretty good in terms of your follow-up with hospitals across
the country that, in fact, new moms realize that information is
pretty good to receive?
Dr. Beers. It is, and that is pretty standard education
that is given in the hospital. I think one of the important
things to remember is that, when you are a brand-new mother
having just delivered a baby, you know, maybe 24 to 76 hours
previously, you may not remember everything or absorb
everything you are being told right in that moment.
So being able to continue that education is also very
important.
Mr. Upton. Dr. Mendez, I was chairman of the committee when
we passed and signed into law Leader Steny Hoyer's School
Access to Emergency Epinephrine Act. Can you give us an update
on how that bill is being implemented as well as the School-
Based Allergy and Asthma Management Program Act----
Mr. Mendez. Sure. I would say, you know, it is a win-win
when you look at the numbers and the results and the outcomes,
that, you know, asthma is quite costly, and I think that we
reduced by $23 billion the amount of cost to the healthcare
system because what that Act has tried to do was provide
upstream help in terms of interventions before you end up in
the emergency room or the hospital.
I think, for the National Asthma Control Program, $71 is
saved for each dollar spent in the program. So, to the extent
that we can have forward-facing, more advanced protocols here
to prevent asthma attacks or allergy attacks is really helpful.
So continuing with this current bill, 2468, will help that by
adding the asthma piece as well.
Mr. Pallone. Well, I look forward to pushing that
legislation forward. Appreciate your testimony.
And with that, Madam Chair, I yield back.
Ms. Eshoo. The gentleman yields back.
It is a pleasure to recognize the gentlewoman from
California, Ms. Matsui, for her 5 minutes.
Ms. Matsui. Thank you very much, Madam Chair.
And I want to thank the witnesses for being here today.
You know, I was thinking about the fact that schools play a
fundamental part in supporting the health and well-being of
children, particularly with asthma and allergies, and given the
rapidly growing prevalence of childhood food allergies, we must
improve school allergy management programs to ensure the
continued safety and inclusion of all students.
Moreover, I am particular on the risk factors for food
allergies, and the reasons why these potentially life-
threatening diseases are becoming increasingly common among
kids are not fully understood at this time.
Further, 1 out of 13 children in the United States is
living with food allergies. And my grandson is one of them. And
if you have someone in the family, you immediately become
sensitized to this. I know too well the serious health, social,
and economic impacts that a severe food allergy and related
adverse immune responses--like hives, asthma, and shock--can
have on children and their families as well as their friends.
So we must do more to recognize and study food allergies,
and that is why I have introduced the FASTER Act, legislation
that updates labeling laws to include sesame and expands data
collection of Americans' exposure to specific food allergens.
My bill aims to improve the way we monitor, manage, and treat
these complex and multifaceted diseases.
Mr. Mendez, thank you very much for specifically
highlighting the growing prevalence and serious concerns
related to childhood food allergies in your testimony.
Can you expand on some of the best practices for managing
food allergies in schools? I am thinking about the fact that
the school seems to be the environment that most children
interact in, which means not only the personnel, it is the
teachers, it is the parents. There are also fellow students
too.
Mr. Mendez. Yes.
Ms. Matsui. So how does this legislation incentivize
greater dissemination of these best practices?
Mr. Mendez. Yes, sure. Thank you for that. And, you know,
things have changed completely in the last 20 years, when 2 of
my 3 kids had food allergies, and we have come a long way since
then, but there are still a lot of gaps and things that we need
to do.
I think having--and they are in the bill--having trained
personnel in acknowledgment of food allergies is really
important in the school, an explicit anaphylaxis program so you
have policy and procedures in knowing how to deal with an
asthma attack or an allergy attack in the school, with
instructions on administering the medication, having updated
school records, having a school nurse involved in things, and
then incident reports for usage and medication are really key.
And then, again, stock medication and train personnel.
Ms. Matsui. Well, where do the greatest gaps in
understanding food allergies, where do they still exist? And
how can we best direct the future direction of food allergy
research?
I remember, when my son was going to school, no one ever
thought about this at all. We used to bring all kinds of
cookies and cakes and things to school. Now it is so prevalent
and it is something that everybody is aware of but not knowing
quite what to do. And I want to understand where the future
direction that you believe we are going in.
Mr. Mendez. Yes, sure. I think continuing to increase that
awareness level is really important. I mean, there is food
allergy bullying that happens----
Ms. Matsui. Yes.
Mr. Mendez [continuing]. In classrooms that we really have
to be aware of. And to the extent that this bill, 2468,
codifies an approach, then it recognizes that that is not OK,
to have food allergy bullying.
I think the other thing is, on the clinical trial side,
raising the awareness that they are out there and increasing
diversity in clinical trials and recruiting more patients into
clinical trials. I think that what we have found is that there
is not a high degree of awareness in clinical trials, as well,
for future research.
Ms. Matsui. Do you find that there--in your understanding
of schools, are there certain schools that--I mean, I am sure
that there are disparities----
Mr. Mendez. Yes.
Ms. Matsui [continuing]. In where the schools are and the
economic levels. Do you find that there is more emphasis on
certain schools than other schools? And what can we do to
ensure that everyone gets covered here?
Mr. Mendez. Sure. Well, it is clearly in the health
disparities issue where that comes into play. And I think, if
you look at the ZIP Codes in some of those schools, those are
the ones that are most challenged.
In our State Honor Roll report, we looked at those various
school policies. There are 24 that have made that honor roll
right now, but we could go a lot further.
This National Asthma Control Program is really important,
and if we could expand that as well, in addition to your great
work on the FASTER Act, I think it would really go a long way
towards helping with asthma and allergies in the school
community.
Ms. Matsui. I want to thank you.
And I am out of time, but, Ms. Zarecky, I think the
greatest loss anyone can ever experience is a loss of a child.
And thank you so much for being here. And know that we will do
everything we possibly can to ensure that we find explanations
and to continue our work on these issues. Thank you very much.
And thank you very much.
Ms. Eshoo. The gentlewoman yields back.
I know the gentlewoman has legislation--and I look forward
to taking it up--relative to one of the allergies, to sesame
seeds. And that is not borne on labels. I did call the FDA,
spoke to the person in charge of this issue, of that division
of the FDA, trying to make the determination whether they could
handle this administratively or we should move ahead
legislatively. They said it would take between 5 to 7 years to
label. So I think we have to get your bill going, Ms. Matsui.
OK. It is a pleasure to recognize the gentleman from
Virginia, Mr. Griffith, for his 5 minutes of questions.
Mr. Griffith. Thank you very much, Madam Chair.
And I, too, support the principles of Ms. Matsui's bill. My
family are consummate label readers.
Ms. Zarecky, you know, you talked about--and you got to me
because you talked about those moments when you go in to listen
to your child breathing, and I did that many times,
particularly with my older son, who has lots of food allergies
and breathing issues, including asthma. And so I know that
feeling, and I am so sorry.
That being said, let me switch back to allergies, which is
where I had planned on going, but, you know, your testimony is
very compelling.
I like the bill. I do have some questions about it.
I will tell you that, you know, this is not something new,
as you know. It has been around for a long time. My mother
loves to still tell the story of, when I was 5 years old, I got
in trouble for a brief period of time because I threw a cookie
across the room. They did not understand. I had and still have
a wheat allergy. I knew I couldn't eat that cookie. And back in
the early 1960s, they didn't have rice cookies readily
available or, you know, other flours. Everything had wheat in
it. And I knew I couldn't have it, but the aide who had just
been hired had no idea and kept handing me the cookie and said,
``No, this is for you.'' And, finally, after having refused it
several times, I tossed it across the room. I don't remember
it, but my mother loves to tell the story.
Mr. Mendez. Uh-huh.
Mr. Griffith. Likewise, and as a part of what I was
thinking about when you were testifying, one of the greatest
days of my life was when my son, my older son--he is now 14 he
will be embarrassed and roll his eyes if he ever sees this--but
he was about 2\1/2\. We don't know to this day what he got a
hold of, but something that we were eating at a restaurant, he
got something he was allergic to. We don't know what it was. We
heard the wheezing beginning.
Mr. Mendez. Yes. Right.
Mr. Griffith. We had already turned the car around. My wife
and I were already going to the hospital. And from the back
came this little voice that said, ``Mommy, I need to see a
doctor.'' The self-awareness factor is so important.
And so I appreciate the bill that Phil Roe and Steny Hoyer
have put in. And Phil has had similar bills in the past.
And they had actually had--and one of my concerns with the
bill is that they had actually had some requirements that you
have medications in the schools, which I like. This one does
not require that. Now, Virginia has epinephrine in the schools
now. But, you know, if something were to happen, you know, that
is step one, as you know.
But one of the questions that comes up is, the trained
individuals, how much training would they need? Because I
represent a district that has a--we are 422nd in household
income out of 435 in the U.S. House. The school systems don't
have the money to necessarily have a school nurse, an R.N., in
every building. They have one somewhere in the system most of
the time.
Mr. Mendez. Sure.
Mr. Griffith. So what kind of training would those folks
need? And would it be so extensive that it would be too
expensive for poor communities like the ones that I represent
to be able to afford?
Mr. Mendez. Yes. I don't think so. And that is one of the
things that we do with the CDC through their National Asthma
Control Program. We publish materials on our website which are
completely free for an asthma action plan, for an allergy
action plan. So just having those--they are easily
downloadable. You could get them on a lot of doctor sites as
well.
Then, in terms of training, there are videos that we
produce that walk you through what an asthma attack looks like
and how to address asthma.
So those----
Mr. Griffith. But somebody----
Mr. Mendez [continuing]. Are all free resources.
Mr. Griffith [continuing]. Some health teacher or somebody
in the school could do these videos and qualify under the bill?
Mr. Mendez. That is absolutely right.
Mr. Griffith. All right. I appreciate that, because that
would be a concern. I want those people trained, I want them to
be aware, but I also don't want to, you know, price them out of
the market or make it so that they can't meet the requirements.
Mr. Mendez. Yes. I mean, the legislation is great because
it comes full circle. It creates incentives for schools to
access some of the free materials that the CDC is working with
other partners to address on a public health basis.
Mr. Griffith. Now, let me get this on the record too,
because sometimes people will look at the language and then
they will get carried away. It says in the bill on page 3 that
the schools have to have efforts to reduce the presence of
environmental triggers of allergies and asthma.
My son, my 14-year-old, is allergic to every tree in the
East. I don't want anybody to interpret it and I don't think
you mean to have it interpreted that they have to chop all the
trees down around the school. Am I correct in that? Just make
sure----
Mr. Mendez. Right. No, that is----
Mr. Griffith [continuing]. That they have clean systems
inside the school?
Mr. Mendez. Yes, that is exactly right. There are some best
practices that you could do by looking at your air filtration.
I mean, there is indoor air, you know, rugs in the classroom,
that kind of stuff, that you can manage. So it is not about
cutting down trees.
But there is legislation locally that addresses idling
school buses, for example, and idling cars. Those are things
that you could do on a local basis to reduce fuel emissions
that could trigger an asthma attack.
Mr. Griffith. I appreciate it very much.
My time is up, and I yield back.
Mr. Mendez. Thank you.
Ms. Eshoo. The gentleman yields back.
It is a pleasure to recognize the gentlewoman from New
Hampshire, Ms. Kuster, for her 5 minutes of questions.
Ms. Kuster. Thank you very much. Great to be with you.
And, Ms. Zarecky, I am so sorry for your loss. And I just
want to say that I am here today on behalf of my great-niece,
Leah, who passed from SIDS just over a year ago. And as my
niece has said, our family will never be the same. So Leah is
with me always, every day. And I just--the pain that my niece,
Miley, and her husband, Dan, have gone through, and my sister,
Debbie, and her husband, Peter, and our entire family. So I am
with you every day. I appreciate your courage coming forward.
And I want to thank Dr. Beers and every pediatrician in
this country. I find it extraordinary, when I went to do the
research after losing Leah to understand the scope of this, it
is quite an extraordinary public health success that we cut the
number of unexpected infant deaths in half, I believe, from the
``Back to Sleep'' recommendations.
But I am troubled, having done the research--my staff has
given me some statistics. In my home State of New Hampshire, in
the period between 2011 to 2018, 62 sleep-related infant deaths
in my home State, 15 due to SIDS, 42 undetermined. But, despite
the recommendations that all infants be placed on their backs
to sleep, the New Hampshire review group found that only 48
percent of cases reviewed had been placed on their backs.
And so I want to support--and I have asked to cosponsor the
legislation as well. I want to support the additional research
from the truly unexpected, unexplained deaths, but I also want
to focus on this issue of education and training.
In our case, my great-niece, Leah, died in a daycare
setting. And so one of the questions I have for both of you is,
What more can we be doing for training parents? And I think
your point was very important about we need to ask why they are
not able to comply, what is your fear, what is your worry? But,
also, what can we do to be training childcare workers and
providers?
Ms. Zarecky?
Ms. Zarecky. I think Dr. Beers would probably be best
suited to answer that question. Scarlett's death was not an
incident--it was not related to unsafe sleep practices.
Ms. Kuster. Right.
Ms. Zarecky. We followed the same guidelines from the AAP.
We followed them until Scarlett was 16 months old, well past
the age--so Scarlett's death is truly unexplained----
Ms. Kuster. Truly unexplained.
Ms. Zarecky [continuing]. And unknown.
Ms. Kuster. Yes.
Ms. Zarecky. So I am really not qualified to answer that
and would defer to Dr. Beers.
Ms. Kuster. And that is true in our case as well.
Ms. Zarecky. Yes. Yes.
Ms. Kuster. We followed--my niece followed all of the
protocols.
Ms. Zarecky. Yes.
Ms. Kuster. So if you could comment, Dr. Beers, both as to
the sleep protocols but also as to this unexpected,
unexplained, what more we could be doing on research.
Dr. Beers. Absolutely. Absolutely. I would be happy to.
And I think your point about childcare is absolutely spot
on because, as pediatricians, we are providing education to
parents and families but don't typically have the opportunity
to provide direct education to childcare centers and childcare
providers. And so that is a very important place. I think we
need to be thinking about providing education to serve larger,
licensed-center-based childcares but also smaller, home-based
and unlicensed childcare centers, because often that is another
group that may slip through the cracks with education.
Certainly, you know, local jurisdictions can think about
regulations to sort of require that kind of training, and then,
as professionals, we can work to make that training available.
I do----
Ms. Kuster. Can I ask about, in the research that is
happening so far--and my niece and her husband are
participating in the protocol at Boston Children's Hospital.
And thank God they have had that support and that family
support. Do we know from the research, is there an increased
risk at the stage when a baby is beginning to roll over, and
whether that is an issue to be concerned about?
Dr. Beers. Yes, I mean, you do see a peak around 3 to 4
months of age, certainly, which is a bit before that period of
time. But I do think it really does, then, come back to the
point that Ms. Zarecky and others have raised, is that there
was a tremendous public health success with the ``Back to
Sleep'' campaign, and it has somewhat plateaued.
And what that tells us is that we really need more
information and we need better information and more consistent
information when, tragically, infants and children do die
inexplicably. And so getting that information so that we can
make those decisions is, I think, most important.
Ms. Kuster. And my time is over. I apologize. But I want to
thank you for coming forward.
Ms. Eshoo. The gentlewoman yields back.
It is a pleasure to recognize the gentleman from Indiana,
Dr. Bucshon, for his 5 minutes of questions.
Mr. Bucshon. Thank you, Madam Chairwoman. And thank you for
having this hearing today with all of these very important
bills. I was a physician before, a surgeon, so a lot of these
are near and dear to my heart.
Mr. Mendez, as you highlighted in your testimony, roughly
5.5 million, or 1 in 13, American children currently live with
asthma, a disease that is one of the leading causes of school
absenteeism.
The Department of Education and the Department of Health
and Human Services recommend that schools have comprehensive
management plans in place to support children with asthma.
However, many schools do not have such programs in place, as we
have heard. I am proud that my home State of Indiana is a
leader in addressing this growing health challenge and was
named to the Asthma and Allergy Foundation of America's 2019
State Honor Roll list.
I know that you just talked with Congressman Griffith about
the details of the legislation, but can you elaborate on how
H.R. 2468, the School-Based Allergies and Asthma Management
Program, would use a proven model to assist all States in
experiencing the success we have seen in Indiana by ensuring
better outcomes that result from a safe learning environment
for every student?
Mr. Mendez. Sure. I mean, in Indiana specifically, I think
you guys have done, through the National Asthma Control
Program, school nurse trainings on asthma management, indoor
air quality, and pest management. So what we have seen in many
of the States is that, to the extent that you can have this
training up front, it reduces asthma attacks, it reduces
absenteeism because there is greater awareness among the
families that have that and the caregivers.
So this act specifically asks for, you know, in an
emergency situation, an asthma action plan or an allergy action
plan. And we have seen that, with the asthma action plan
implementation over time, it has reduced absenteeism, I think,
by 20 percent or so, to the extent that we have increased the
number of asthma action plans that have been delivered there.
So this legislation will help do that. There is a direct
correlation between awareness and having an asthma action plan
and now an allergy action plan to reducing missed school days.
Mr. Bucshon. Are there certain areas of the country that
are more prone to the allergy situation? And it is seasonal,
correct?
Mr. Mendez. Yes. Yes.
Mr. Bucshon. So, I mean, Indiana, we have seasonal
allergies just like everywhere else, but something like this
legislation, which would create some uniformity, would still be
applicable to most States, correct, I mean, even though there
are obviously differences in the environment?
Mr. Mendez. Yes, no, that is correct. I mean, the idea here
is to create the incentives for all States to work with the
CDC. Because it is a competitive grant program. The CDC works
with the public health departments in various States. So to the
extent that we could expand that program by having States be
more competitive in having these programs is really helpful.
There are belts, you know, that we have looked at. The
central part of the U.S.--we do an Asthma Capitals report, and
the northeast corridor, I-95, and, kind of, the Midwest are
areas that we have seen. And we do that Asthma Capitals report
based on prevalence of mortality and emergency room visits. So
we clearly see there are pockets of where asthma is more
significant.
And we also do an Allergy Capitals report, which looks at
some different criteria. And you don't want to be at the top of
that list either, because it means that, you know, you are
struggling in those areas.
Mr. Bucshon. Yep. Thank you very much.
Madam Chairwoman, I yield back.
Ms. Eshoo. The gentleman yields back.
It is a pleasure to recognize a California colleague, Mr.
Cardenas, for his 5 minutes of questions.
Mr. Cardenas. Thank you very much, Chairwoman Eshoo and
also Ranking Member Burgess, for having this very critical and
important hearing on these important matters.
And I would like to thank the panelists for coming forward
and giving us your expertise, and especially Ms. Zarecky. Thank
you for your bravery and your courage in continuing to make
sure that all of us--us on this side of the room and everybody
in the room and throughout this country--can benefit from
knowledge and investment in efforts so that we can minimize
these tragedies.
So thank you all very much.
In particular, I want to focus on the Healthy Start
program. This important program addresses the infant mortality
rate in America by providing grants to State and local
community organizations that are in the greatest need. Now
nearing its 30th anniversary, the program has created results--
good results. Communities receiving Healthy Start grants have,
on average, reduced their infant mortality rate below the
national average despite having a history of a higher infant
mortality rate.
However, the national infant mortality rate in our great
country is still far too high. It is clear that we need to do
more to improve the programs and ensure the funds are getting
to areas that have the greatest need.
Under current law, the Secretary of Health and Human
Services is required to consider several factors that
contribute to infant mortality rates when awarding grants, such
as low birth weight. H.R. 4801, the Healthy Start
Reauthorization Act, would require that the Secretary take
other important factors into account, such as social
determinants of health, and under consideration when awarding
grants.
Dr. Beers, can you give us some examples of social
determinants of health that might affect the health outcomes of
pregnant women and newborns?
Dr. Beers. Absolutely. I think there are many examples; I
will highlight a couple.
First would be food insecurity. If a family is living in a
household where they do not have reliable access to food, that
certainly is going to affect the health and nutrition of the
mother and the developing baby. So that would be one example.
Housing insecurity is another issue, as we have talked a
lot about, environmental toxins, environmental influences on
health. And certainly, same for a pregnant mother. If she is
living in a housing situation where she is exposed to mold or
other unsafe environmental influences, that can have an
influence as well.
Transportation is another great example. If your OB-GYN
care is across town and you have no way to get there, you are
not going come to as many of those appointments. And so access
to good, reliable, affordable transportation--I have many
patients who have to make a decision between buying diapers and
bus fare. And so making sure that families have and mothers
have transportation is important.
Mr. Cardenas. So all the top-line determinants that you
just outlined--and, as you mentioned, there are many more, but
in the interest of time, thank you for sharing those with us--
is this exclusively a rural issue or a big city issue, or is it
pretty much across the board, the things that you outlined?
Dr. Beers. It is really across the board. Sometimes, you
know--I get asked this question a lot, living here in DC, where
we are very close together--but sometimes it is just as long to
get to an appointment as it might be in a rural area. So it
really is across all jurisdictions.
Mr. Cardenas. Is this a minority issue or is this an
American issue across the board?
Dr. Beers. It is absolutely an American issue across the
board. There are significant racial and ethnic disparities that
do exist that we need to dive into, but it is an issue for all
families.
Mr. Cardenas. OK. Thank you.
Healthy Start grantees also coordinate with other evidence-
based programs that serve infants and their families, including
the Special Supplemental Nutrition Program for Women, Infants,
and Children, or WIC, and the Early Childhood Home Visiting
Program.
Dr. Beers, can you explain these programs, how they work
together with the Healthy Start program to support newborns,
and how coordination with these programs can be streamlined to
improve healthy outcomes?
Dr. Beers. Absolutely. Absolutely.
I think one of the key points of the Healthy Start program
is the focus on care coordination and individualized services,
and so really, through the program, helping families to access
all of those different services that you recommend that they
may need. Families have an assessment done when they first
enter the program to really target in on what those needs are
and then help connect them to existing services to decrease
duplication of programming and duplication of services.
Mr. Cardenas. So, again, I would like to clarify--and the
reason why I am having this clarification, because far too
often, when we see communities in need in America, they tend to
show minority communities, poor, inner-city communities, but I
just would like you to help clarify, is this an issue that
faces all Americans--White, Black, brown, women, men, children?
Is it pretty much across the board?
Dr. Beers. Yes, it is.
Mr. Cardenas. OK. Thank you very much for your clarity and
for your expertise.
I yield back.
Ms. Eshoo. The gentleman yields back.
It is a pleasure to recognize the--is he here?
Oh, there you are, leaning back.
Mr. Shimkus. I don't have any questions.
Ms. Eshoo. You don't have any questions? Happy New Year to
you, John. Lovely to see you.
All right. I will recognize the gentleman from Kentucky,
Mr. Guthrie, for his 5 minutes of questions.
Mr. Guthrie. Thank you very much.
And I am sorry, there is another hearing of this same
committee, a subcommittee, that I have been in this morning.
And so I am actually going to kind of follow up with you, Dr.
Beers, but Mr. Cardenas kind of asked some of the questions
that I was going to ask.
But first I just want to thank Ms. Zarecky for being here.
I have a cousin who has had a similar situation. I know how
devastating it can be on families. And as we look at the infant
mortality decline, about 14 percent, and we look at numbers,
those are important, but it is also important to see faces.
Because the ones that are still affected, it is--so your
willingness to come here at a difficult, emotional time,
present to us, as we deliberate and make decisions. I can tell
you, I look at faces I have met when I have to deal with issues
like this far more than graphs that people put in front of you,
so it is important that you do it. I know it has to be
emotionally draining, but it is important and a good honor for
your child.
But, Dr. Beers, as Mr. Cardenas was talking to you, I know
that in your testimony you said between 2007 and 2017 infant
mortality has dropped by 14 percent, which is good to know
because we are actually spending a lot of time in this
committee studying mother mortality, which has not has the same
decrease, it appears.
So I know you were talking with Mr. Cardenas about things
we need to do about the food insecurity and so forth. So what
do you attribute the decrease to? And I think some of the
things you mentioned before, can you kind of elaborate more? I
know he kind of stepped on my questions, so--but I think it is
important to give you more time to elaborate on things we can.
But why are we seeing the success? I am always like, let's look
at success and see if we can replicate it.
Dr. Beers. Yes, absolutely. And I do also want to clarify,
we have had tremendous success and still have a long way to go.
Mr. Guthrie. Right. Exactly.
Dr. Beers. That is, I think, an important point for us.
So I think there are a couple of things we--there has been
tremendous progress in terms of access to care for, you know,
pregnant mothers and children. So we have had good progress
there.
Families have had some growth in programs that allow them
access to services focused on social determinants, such as
Healthy Start, to really be able to connect families to those
services that they need and those services that really help
decrease the barriers to getting the care that they need and
deserve.
We have grown quite a bit in our medical knowledge in terms
of care of newborn infants and things like sudden infant death
syndrome and sleep-related death issues, which contributes to
that infant mortality rate.
So it really is a combination of a lot of different things.
But some of things that really do remain, as I mentioned in my
testimony, there are still tremendous and very troubling racial
and ethic disparities in the infant mortality rate. And we need
more information, and we need to dive deeper and we need to
seek community solutions for how we continue to address those.
Mr. Guthrie. OK. Thank you very much.
And then, switching a little bit, Mr. Mendez, there is
also--Congress is a snapshot of the American public. And I am a
father of a daughter with a nut allergy and an uncle of a
nephew who goes here at Georgetown but he was home in Kentucky
over Christmas and ended up in the emergency room, eating
something that had peanuts in it.
And so, as you are parents and you can--in particular, I am
talking about schools now--you can control the environment. You
read every label. You become obsessive about anything that
might have traces of nuts in it. But then you send them off to
school.
So that is why it is important that public policy plays a
role in what is happening in schools. And I was in the Kentucky
General Assembly, and we took steps. So, I guess, are States--
does it take the Federal Government having States do this? Or
what are States doing now? I think we have a role, but what are
States doing now in terms of allergies? Or what are good
examples of States----
Mr. Mendez. It really depends on the State, but there are
some--for example, Delaware--that have stocked epinephrine, and
they encourage that. I mean, there is always the sensitivity
about whether or not you want to have mandatory medication in
the classroom. That is kind of some of the issue.
But, to the extent that you have training and an emergency
action plan and there are trained personnel within the school
to respond to those issues, that is really important.
I mean, anyone who has an allergy or asthma that is life-
threatening should have medication and be working with their
doctors and should bring it with them to their school and let
the school know that they have this. And this legislation helps
encourage that and create incentives for that. So that is
really important.
Mr. Guthrie. OK. Thank you.
And those are my questions, and I will yield back.
Ms. Eshoo. The gentleman yields back.
It is a pleasure to recognize the gentlewoman from
California, Ms. Barragan, for her 5 minutes of questioning.
Ms. Barragan. Thank you.
Dr. Beers, thank you for mentioning the environmental
influences. Oftentimes we oversee those or we don't discuss
them--don't discuss them enough.
I happen to represent a district, California's 44th. It
includes the Port of Los Angeles. It is surrounded by three
freeways and the port, and there are high air pollution rates
there. These factors, being surrounded by highways, help to
contribute to some of the worst air quality in the country.
Unfortunately, because of these factors, back home in Los
Angeles asthma is an epidemic. A stunning 1 in 11 children in
Los Angeles County have asthma. In my very own district,
children walk around with inhalers around their necks. And even
the doctor's office, they stock up on boxes and boxes of these
asthma inhalers, expecting to see children come in. It is so
heartbreaking to see, which is one of the reasons why I am so
happy that we are trying to move legislation to address this,
although there are a lot of steps that need to be taken.
The rates of asthma in communities of color are even worse.
That is my very district. I have a district that is almost 90
percent Latino, African-American. Some of the statistics say
that 25 percent of African-American children in L.A. County
have asthma, and Hispanic children are 1\1/2\ times more likely
to die due to asthma when compared with other, non-Hispanic
children.
Statistics such as these are one of the reasons that I am a
cosponsor of the School-Based Allergies and Asthma Management
Program. By incentivizing schools to maintain asthma management
programs, students and parents can be assured that the child
will be able to have the care they require in case of an
emergency.
Mr. Mendez, can you elaborate a little bit on how this
bill, H.R. 2468, will help to reduce some of the racial
disparities that we see happening with asthma?
Mr. Mendez. Yes, sure. I mean, you know, there is going to
be a child with asthma or allergies in just about every school
in the United States. So, to the extent that this program
creates incentives to have an asthma or an allergy action plan
in the State will be really helpful to all those communities.
The CDC, which provides grants and works with the public
health systems in each State, will favor whatever schools or
whatever States have this kind of program. So, to the extent
that this becomes legislation and creates incentives for
schools and States to do this, then it will improve funding and
their likelihood for getting funding to prevent asthma and
allergy attacks and have the right systems in place.
Ms. Barragan. When I was a kid, I remember my father had a
home that was right near the freeway. And I didn't know any
better. I said, ``Well, geez, if you live near the freeway,
that must mean it is going to be faster to get to where you
want, so it is a great place.'' And, of course, now knowing
what I know and the allergies that I deal with----
Mr. Mendez. Yes, definitely.
Ms. Barragan [continuing]. I know that there is a
connection there.
Besides this bill, do you have any ideas on other things
that we could be doing to address asthma, you know, in
particular on a congressional level?
Mr. Mendez. Sure. I mean, you know, there are the outdoor
environmental issues as well. I mean, to the extent that there
have been rollbacks of some legislation that, you know, have
contributed to more dirty air, I mean, that is certainly an
area.
You are witnessing it in your district, and I think, in
particular, they are trying to come up with specific standards
for truck emissions. And, in particular, if you are in that
window or that area where--I think it is the port--there is
quite a bit of short-haul trucking, and there is quite a bit of
pollution that is generated from that.
So there is the outdoor environmental issue, and then, you
know, there are indoor environmental issues as well, having,
you know, indoor air quality and being aware of that in the
schools. I mean, kids spend the majority of their time either
at school or at home. Those are areas that we could really be
focusing on.
Ms. Barragan. Great. Thank you.
And, ladies, thank you for being here to talk about the
infant mortality rates. Certainly in a community like mine that
is majority minority, it is heavily impacted. In L.A. County,
they have received over a million dollars and were able to
invest in programs such as the MAMA's Neighborhood project,
which provides tailored home visits during prenatal, labor,
delivery, post partum, and interconception periods up to 18
months following birth. These visits help reduce the rates of
infant mortality.
With the last 10 seconds I have, do either one of you--can
maybe you comment on how else the Healthy Start program works
to reduce the racial disparities in care?
Dr. Beers. I will give a 2-second answer, which is: I think
that engagement with the community and the focus on community
impact and collective impact is a really important component of
it so that we are codesigning solutions together with families
and communities who are most impacted.
Ms. Barragan. I yield back.
Ms. Eshoo. The gentlewoman yields back.
It is a pleasure to recognize my buddy from Indiana, the
gentlewoman, Congresswoman Brooks----
Mrs. Brooks. Thank you, Chairwoman.
Ms. Eshoo [continuing]. For your 5 minutes.
Mrs. Brooks. And I want to thank you and the ranking member
for holding this critically important hearing, and I am really
pleased that we are talking about all of these bills today.
While my colleague Dr. Bucshon talked about the progress
that Indiana, our home State, is making on asthma, we are not
really doing as well on infant mortality. It has been a huge
problem in our State for a very long time. And, in fact, our
2017 statistics, we had 602 Hoosier babies die before their
first birthday. So that is about 50 babies a month or 12 a
week. I mean, it is a tragic loss.
And so your voice, Ms. Zarecky, on today, of all days, and
sharing with us the tragic story of your daughter Scarlett, you
are a voice for all of these families across the country. So
thank you very much.
And I do want to ask you, though, because you do represent
a much larger group of families than we all really appreciate,
can you share with us a couple of things. Specifically--and I
know you talked about the foundation being such a lifeline, but
is that where--and the grief counseling that maybe they
provided. How did you get connected to that foundation?
What are the mental health services that are needed? We are
hoping that the H.R. 2271--focus on support services for
families. But when I heard, you know, 5\1/2\ months for you to
get the autopsy results, can you--briefly, because I also have
a question for Dr. Beers about the review teams. What more do
we need to be doing? Mental health. And what were your
frustrations?
Ms. Zarecky. Thank you for your question.
First, I would say that, you know, over 5 months is a very
long time to wait, but I am also very grateful that the
pathologist took the time to really thoroughly examine what
happened to Scarlett. So, while it was excruciating, I am so
thankful that they took all measures that they did----
Mrs. Brooks. Good.
Ms. Zarecky [continuing]. To try to find out what happened
to her.
The main reason that we allowed to have the legislation
named after Scarlett is, of course, because we wanted to raise
awareness of what happened to her. So many people are aware of
children who pass away before, you know, their first birthday,
but very few people realize how many of us there are, because
children pass long after their first birthday, all the way up
to the age of 18 years. So I certainly didn't know it could
happen before it happened to me.
So, unfortunately, we--I was lucky. I was connected with
services relatively early. But it was through my own efforts
and my own research that I was able to be connected to--I
actually learned about the foundation that I mentioned through
a bereavement group, which is of course why bereavement groups
are so important. But it would have been wonderful, you know,
if even the term ``sudden, unexplained death in childhood,'' if
I had even learned of it earlier, you know, as soon as Scarlett
passed away, then I could have found the----
Mrs. Brooks. And so, even though you dealt with, whether it
was law enforcement or coroners or medical professionals, you
had to do that on your own.
Ms. Zarecky. Yes, I found my own bereavement support. And
it was just sheer luck that I happened to go to a bereavement
group where another mother who lost her 14-month-old was there
who told me about it. So, yes, I mean, being able to be
connected to those services is critical.
Mrs. Brooks. Thank you so very much for sharing.
And, Dr. Beers, I think what her story shows and her
request for data and more information, I think, shows is that
we need more protocols at all different levels, whether it is
at the death scene investigations--and I am curious about the
child death review teams, which, of course, most of our States
all have child death review teams.
How does the CDC's National Fatality Review Case Reporting
System work with those review teams? And what more do we need
to be doing to institute more protocols that can help make sure
the death scene investigations are appropriate, to make sure
that families get information they need? Can you share with us
a bit more about national standards?
Dr. Beers. Yes, absolutely.
And I think your point is excellent, because it is very
difficult to better understand what is happening with sudden,
unexplained infant death and sudden, unexplained death in
childhood when the data from across States is very
inconsistent, and so it is difficult to get a full picture.
And so your point is very good, in that aligning those
reviews with CDC standards, with consistent standards, is very
important. I think there is a training piece of it, right,
where the review committees need to have clear and consistent
training with resources that link into the registry, as well as
a resource piece of it. Many of these review committees are
underresourced, and so the increased investment in that is also
important.
Mrs. Brooks. Thank you.
And before I yield my time, Madam Chairwoman, I would like
to acknowledge all these kids who are in the audience, who are
incredibly well-behaved and quiet and so good.
And so kudos to you this far in.
So I yield back.
Ms. Eshoo. The gentlewoman yields back.
The reason they are quiet is because we put them to sleep.
It is a pleasure to recognize the gentlewoman from
Illinois, Ms. Kelly, for her 5 minutes of questions.
Ms. Kelly. Thank you, Madam Chair. And I would like to
thank you and the ranking member for us discussing this very,
very important topic. It is just so astonishing to me when I
hear about this, because I have worked 3 years on maternal
mortality, and it is so similar, the issues.
And I want to thank all the witnesses, and particularly you
and your husband for sharing Scarlett's story. Thank you so
much, because that takes bravery and courage. So we really,
really appreciate it.
I wanted to know, Dr. Beers, could you speak to why it is
not only important to reauthorize the program but why updates
to the program are necessary and how that will contribute to
the reduction of health disparities, such as the consideration
of social determinants of health?
Dr. Beers. Absolutely. No, I appreciate that. And I think,
as we have often talked about the importance of knowledge and
research, we have more knowledge and research than when the
program was initially authorized, and so incorporating that
into the legislation is very important.
I think we have talked about this a bit, but the social
determinants of and social influences on health are such key
contributors to infant mortality and maternal mortality rates
that really incorporating those into the legislation and into
the program, I think, is critically important and will help us
to continue to bring rates down and continue to move forward.
Ms. Kelly. As the chairwoman said, we were able to pass
bipartisan legislation out of this committee on maternal
mortality, but one thing we haven't done yet is, after you have
the baby and the importance of care not just for 2 months but
the whole year, studies have found. So that is something that I
am going to continue to pursue and push. In both cases was this
so very, very important.
Ms. Zarecky, is there anything that you would like to say
that we haven't asked you?
Ms. Zarecky. That is a tall question.
Ms. Kelly. Just, anything else?
Ms. Zarecky. Yes. I guess I would just like to, you know,
thank you for hearing Scarlett's sorry and recognize that
Scarlett is one child but there are thousands of children out
there who really need Congress. The families really need
Congress's help to figure out what happened to them and stop it
from happening in the future.
Ms. Kelly. Thank you so much.
And I yield back.
Ms. Eshoo. The gentlewoman yields back. We are all grateful
to her. She is the resident scholar and leader on the issue of
maternal mortality.
It is a pleasure to recognize the gentleman from Georgia,
the only pharmacist in the Congress, Mr. Carter.
Mr. Carter. Thank you, Madam Chair. Thank you.
And thank all of you for being here, especially you, Ms.
Zarecky. Thank you. I appreciate this very much.
Dr. Beers, I want to start with you. Let me ask you, are
you familiar with Dr. John Snow? Did you ever read that book
``Ghost Map''?
That is a great read. I hope you will get an opportunity.
It is about cholera and how he, back in the mid- or early
1800s, how he finally used data to figure out what was causing
that and actually was able to get it down to a single well
where people were getting water, and that is how they were
getting infected and that is how many people had died.
And that is what I want to concentrate on here, because I
am from Georgia, and we are the number-one State in maternal
mortality. And I still cannot understand that, for the life of
me.
But I just want to ask you, how important is the data
collection, and how important is it to make sure you are asking
the right questions? And are we asking the right questions?
Dr. Beers. Thank you for that. And I agree that that story
is a wonderful public health story and highlights the
importance of data.
The data is very important in this. And we are asking some
of the right questions, but I am not sure we are asking all of
the right questions. And I am not sure we are always asking the
right people the questions.
I think it is important for us to expand our data
collection in this area to really be talking to affected
families and to mothers who are receiving prenatal care and
find what their barriers are, find where they are getting
difficulty accessing services and/or what things they are
running into.
And when we can match that qualitative data that we get
from asking those questions with the, sort of, more number/
quantitative data, that is going to give us a more full picture
and help us further go down the line.
Mr. Carter. What kind of challenges are you having now in
the way of data collection? What are your obstacles?
Dr. Beers. Yes. So there are a number of things. I think,
you know, we certainly have reasonable, I think, nationwide,
reasonable access to, sort of, secondary data, hospital-based
data, right? But it is harder to get data on some of the social
conditions that families are living in. It is harder to get
this more qualitative data. It----
Mr. Carter. But from what--I don't mean to interrupt you,
but from what I understand, with maternal mortality, the
economic level doesn't really enter into it.
Dr. Beers. Correct. And it enters into it, but we see these
racial and ethnic disparities despite socioeconomic levels. So
it is kind of a ``yes, and'' situation.
But also recognizing that you can look at an entire
neighborhood and every person and family in that neighborhood
has a different experience and is living in different
circumstances. And understanding those nuances better----
Mr. Carter. Uh-huh.
Dr. Beers [continuing]. Will help us then better understand
how we address this.
Mr. Carter. Let me ask you something. Are death
certificates uniform all throughout the Nation, or each State
has a different one?
Dr. Beers. No, each State has a different one.
Mr. Carter. How much of a challenge is that?
I mean, I still question why Georgia is first. I just don't
get it. I know we have south Georgia and rural areas, but I
still don't understand. I mean----
Dr. Beers. Right.
Mr. Carter [continuing]. The death certificates, should
they be uniform? I mean, should we be asking the same questions
all throughout the Nation?
Dr. Beers. Right. I think that certainly--I think that
would be one thing. I think, often, in these situations--and we
certainly see this in Washington, DC, as well. We are not doing
very much better than you are in Georgia. And the causes are
really multifactorial.
Often you can address certain issues fairly easily, and
then when you get to some of these really difficult, complex
issues, the causes really are multifactorial. So it has to do
with education and access to care and bias in healthcare and
social determinants of health and how all those things
interrelate. And that is a more difficult thing to tackle, and
it requires a deeper investment to tackle it.
Mr. Carter. But you would agree that most probably not
everyone is defining maternal mortality the same throughout the
country? In other words, this very well may have been something
that is not reported in one State but is reported in another
State.
Dr. Beers. I don't know--I am not 100 percent sure I would
say the maternal mortality itself is being defined differently,
but some of the, sort of, underlying things may be reported
differently and different questions being asked that can help
give us a full answer.
Mr. Carter. And, regardless, we still have to address it. I
mean--and this is a challenge. And I thank you for your work.
And I thank all of you for being here. Whether it be
maternal mortality or sudden, unexplained death in childhood,
God forbid, all of these things are extremely important. We
just have to figure it out. And it is like it is right there in
front of us, and we just can't figure it out.
So thank you for your efforts, and thank you again for
being here.
And I yield back.
Ms. Eshoo. The gentleman yields back.
Our subcommittee is blessed to have more than one physician
as a member, and so it is a pleasure to recognize Dr. Ruiz for
his 5 minutes of questioning.
Mr. Ruiz. Thank you very much.
As an emergency physician doctor, I have seen some very
severe cases of asthma and asthma attacks. In fact, there is
one child who I will never forget. He died in the emergency
department. He was a young, 6- to 8-year-old, African-American
boy, playing games with his stepfather, and then suddenly just
went into a dramatic asthma attack. He was brought into the
emergency department. After a long and intensive resuscitative
effort with multiple doctors, he was pronounced dead.
And I was in the room with the doctors--this was during my
training at the time--when they told the parents, and it was so
heartbreaking. And I am still haunted by that. And so I really
respect the seriousness of asthma, because I have seen the end
result of what can happen, especially for kids.
And, many times, it is preventable. It is preventable with
the right knowledge, the right training, the right medications,
the right follow-up, the right coverage. It is preventable.
So there is actually one area in my district that has a
very severe asthma problem. They have 3 times the asthma rate
in the State of California. In fact, they have the highest
pediatric asthma hospitalization rate in the State of
California.
And it is multifactorial. For one, we have a large body of
water, the largest in California, called the Salton Sea, and
when it recedes, the dust is exposed to the children. Two, it
is a very low-income--community, in the setting of very
medically uninsured, where there is only 1 doctor per 9,000
residents in that part of my district. To give you perspective,
it is recommended to have 1 to 2,000 in this country. One to
3,500 is considered medically underserved. So we are 1 to
9,000.
Then they live in underdeveloped areas, so they have dirt
roads. Then they live in overcrowded, substandard housing and
trailer parks, like I did in my first few years of life.
So all these point to the conditions that children live
under, especially those with asthma. And so those kids are less
likely to be able to manage their symptoms, more likely to end
up in the emergency department, and more likely to be admitted
as the result of an uncontrolled asthma attack, when it could
be preventable.
So, Mr. Mendez, can you talk about the importance of the
children's asthma treatment grant program for helping ensure
that preventable asthma attacks are avoided?
Mr. Mendez. Sure. The grant program administered by the
CDC, the National Asthma Control Program, takes a public health
approach and tries to work with State health agencies in order
to provide funding to have upstream remediation to issues like
that.
And then, to the extent that this program could be rolled
out more and have more States win these grants in the public
health systems, then I think we will see on-the-ground
improvements. Because we have seen, overall, in the various
States that have it right now, reductions in emergency room
visits, improvement in adherence to medication, reduction in
hospitalizations. So, I mean, those three things are really
helpful.
And, you know, with an $82 billion cost of asthma to the
healthcare system, there are ways to reduce that through
upstream programs like this for the National Asthma Control
Program. I think that we increased the budget by a million
dollars this year, or you voted for that, but to the extent
that we could have even greater funding for it--and I think
Representative Engel, through the Elijah Cummings Family Asthma
Act, is pushing towards that.
Mr. Ruiz. And can you walk us through how environmental
factors and, by extension, the social determinants of health
affect the overall public health?
Mr. Mendez. Sure. I mean, you know, there is some overlap
here, but if you go into housing where there is mold,
cockroaches, these are all triggers for asthma attacks. So I
have been in housing situations or visited housing where I have
gone in with a trained health worker who has basically said,
you need to remove the carpeting, you need to work with your
landlord in order to have them patch up the rodent holes, and
then----
Mr. Ruiz. And how does poverty affect----
Mr. Mendez. It is significant.
Mr. Ruiz [continuing]. The asthma?
Mr. Mendez. I mean, that is really part of it. So, to the
extent that you can control or improve the indoor health
environment, then it will have better outcomes for the patient.
Mr. Ruiz. It is also a matter of coverage. It is also a
matter of being insured and being able----
Mr. Mendez. Yes.
Mr. Ruiz [continuing]. To afford your proper asthma course.
You know, most people think it is just the albuterol inhaler
when you are having an attack----
Mr. Mendez. Right. That is the rescue.
Mr. Ruiz. That is the rescue, but----
Mr. Mendez. Yes.
Mr. Ruiz [continuing]. The prevention is the other
medications.
Mr. Mendez. That is correct.
Mr. Ruiz. Thank you.
Ms. Eshoo. The gentleman yields.
It is a pleasure to recognize the gentleman from Missouri,
Mr. Long, for his 5 minutes of questions.
Mr. Long. Thank you, Madam Chairwoman.
And thank you all very much for being here today on this
very important topic.
I think the natural order of things is that, you know, our
children are supposed to bury us and we are supposed to bury
our parents, and when that doesn't happen, it is just heart-
wrenching.
And I have a 30-year-old, now, daughter that was diagnosed
with Hodgkin's lymphoma at 25. And when we were at the
emergency room over here at G.W. and they said, ``Your daughter
has a large mass in her chest, and it is malignant,'' you
immediately think that you are going to lose that child. She is
30 now, been through all the chemo. And we are very, very
thankful to God and to doctors and the healthcare providers and
everybody else that we still have her.
So, Ms. Zarecky, I can't fathom, you know, what you went
through, to put a healthy baby down to bed and go in to check
on the baby and the baby is deceased. So thank you for being
here.
My oldest daughter is 33. She is a pediatrician. And I
think I have one of her cards in my pocket. And, unfortunately,
I think it is in my left pocket, so I have to figure out how to
get it out. But I would like to give it to you, Dr. Beers. And
just, if you wouldn't mind, just text her a little note or
something and say, ``I was with your dad today,'' because it is
great honor to have the president-elect of the American Academy
of Pediatrics with us, with my daughter being a pediatrician.
I just wish she didn't have a 6-month-old poodle. Because I
was babysitting the poodle, and out under the gate it went, and
you see the end result here. But I am advertising for somebody
who is this doctor--some sling provider, it looks like. But,
anyway, that was my Christmas present to myself, was to break
my shoulder on the Friday before Christmas wrangling her
poodle. But the poodle did survive, I have to tell you.
Dr. Beers, as a pediatrician with a focus on community
pediatrics, what has been your experience with the Healthy
Start program, and how it has been able to remove barriers to
accessing healthcare?
Dr. Beers. Thank you very much. And I would be delighted to
speak with your daughter. It is wonderful to hear of that
connection, so thank you.
So, you know--and we have Healthy Start here in DC, so I
have the privilege of having had families and patients who have
participated in the program. And I think there are really a
couple key pieces that highlight the importance of the program,
in my experience.
One is the real patient- and family-centered nature of it.
It is very individualized. It really takes the family's
preference and needs into account and then really works to help
connect the family to the healthcare services, to the other
enabling services that can help support them in accessing the
care they need to do the best they can for themselves and for
their family.
I think it is also--as a program, it is very connected and
engaged with the rest of the community and the rest of the
community-based services so that you are really utilizing all
the resources available to you in your neighborhoods and in
your community.
Mr. Long. OK. How does the Healthy Start program support
provider training?
Dr. Beers. It helps support provider training in a number
of different ways. So by giving medical providers the education
about how to access these services and about what needs
families have and how to connect them to that. It also helps
with provider training, nonmedical provider training, as well.
Mr. Long. OK. And how does the Healthy Start
reauthorization address the need for collaboration with these
providers?
Dr. Beers. Yes. Yes. That is great. And I think, you know,
one of the most important things that I have learned through my
career and through working in the community is that we all work
better when we work better as a team. I have my own set of
skills and experiences. My colleagues and partners have their
set of experiences. Our social workers have their experiences.
Our WIC nutritionist has her skills and experiences. And so we
do better for families when we all come together and work
together as part of a team. And that is what Healthy Start
helps promote.
Mr. Long. OK.
You also mentioned the serious maternal mortality crisis
that we are facing. And I am a member of the Black Maternal
Mortality Caucus, and we are doing everything we can to figure
out what is going on there. Can you discuss the role the
Healthy Start program can have in reducing maternal mortality?
Dr. Beers. Absolutely. And it does, it comes back to some
of these tenets of identifying what a family's needs and
barriers are to accessing good-quality care and then helping to
break down those barriers so that mothers can get there.
And so, you know, one of the first and most important
things for a mother when she is pregnant is to be able to get
to her OB-GYN care and access those services early and on a
regular basis, and Healthy Start can help break down those
barriers.
It can help identify what some of the social determinants
and what some of the social needs may be that are getting in
the way or, as we were speaking earlier, may be contributing to
poor maternal health outcomes and start to address those things
as well--the food insecurity, the housing insecurity, things
like that.
Mr. Long. Do you hear a tapping, or is it just me?
Dr. Beers. No, I do hear a little tapping.
Mr. Long. I yield back.
Ms. Eshoo. Tapping and clapping. How is that?
It is a pleasure to recognize the gentlewoman from
Delaware, Ms. Blunt Rochester, for her 5 minutes of questions.
Ms. Blunt Rochester. Thank you, Madam Chairwoman, for
recognizing me and also for this important hearing.
And I would also like to apologize. Some of us may be going
in and out because of a competing hearing, but this is a very
important hearing.
And I would like to thank the witnesses for joining us as
we consider legislation that aims to improve the health
coverage of our constituents and also the health outcomes.
Ms. Zarecky, I want to personally thank you so much for
taking the time, for sharing your story, and for honoring
Scarlett. Having lost a spouse unexpectedly, I understand
turning that pain into purpose. And so I thank you, and I thank
your family for being here today for something that is vitally
important to our country.
Last year, I was proud to support the passage of H.R. 3172,
the Safe Sleep for Babies Act. Today, we have an opportunity to
continue those efforts by looking at H.R. 2271, Scarlett's
Sunshine on Sudden Unexpected Death Act.
We need a strong, multifaceted public health approach in
order to understand the causes of sudden, unexpected infant
death, SUID, and sudden, unexpected death in childhood, SUDC,
and how we can prevent instances of both. I am a cosponsor of
H.R. 2271 because I believe this legislation achieves those
goals. And I am thankful for my friend and my colleague,
Congresswoman Gwen Moore, for introducing this legislation.
As the chairman pointed out, this multifaceted approach
includes grant funding for State and local health departments,
community-based organizations, and nonprofits so that they can
provide support to families who have lost an infant or a child
to SUID or SUDC.
And I am pleased to hear that the services had a positive
effect on your family as well.
Ms. Zarecky, in your testimony, you shared the important
policy priorities that we should be considering. And the
strength of H.R. 2271, to me, is that it recognizes those
priorities and it puts our money our where our mouth is. The
bill authorizes $8 million to improve how we investigate and
record the unexpected deaths of infants and children, $1
million to improve case reporting, and $15 million to help
States develop and implement prevention strategies.
Ms. Zarecky, do you think that it would be difficult,
challenging to make the progress that we need to make without
including funding for these critical activities? I think that
is an easy question.
Ms. Zarecky. Absolutely.
Ms. Blunt Rochester. Absolutely. Are there other sections
of the House bill that you think make the House version strong?
Ms. Zarecky. Of course. One element of the legislation here
in the House, of course, is the addition of the family support
and the bereavement support. You know, it is a critical piece,
I think, to being able to support families after their loss and
their unique needs.
Ms. Blunt Rochester. Yes. Thank you.
Another public health issue facing children across the
country and in Delaware is the rate of asthma amongst school-
age children. In 2015, the Delaware Survey of Children's Health
asked parents if their child had ever been diagnosed with
asthma, and, in the responses, 17 percent of parents said that
they had had an asthma diagnosis.
For this reason, we must have strong policies in place and
equip our schools with the tools they need to support these
efforts.
That is why I am proud that Delaware's public schools
received an ``A'' on the Asthma and Allergy Foundation of
America's 2019 State Honor Roll for meeting a key number of the
23 core policies laid out to protect students.
Mr. Mendez, how did the AAFA choose the standards used in
their State Honor Roll of Asthma and Allergy Policies for
Schools?
Mr. Mendez. Sure. We have been doing it for a while, but we
have a medical and scientific board, and we work with the
community, and these really are the best practices that we see
as really important to prevent asthma and allergies. A lot of
this bill, 2468, picks up on some of those policies that we
recommend.
So congratulations to Delaware. I mean, you have some stock
epinephrine laws, for example, that are really critical and
that have been successful.
So 2468 really tries to include, again, asthma action
plans, allergy action plans, how to deal with those kinds of
emergency situations, in addition to looking at the
environmental controls inside the classroom, where many of the
kids spend much of their time.
Ms. Blunt Rochester. I am almost out of time. I have some
additional questions that I will submit to the record.
But I want to thank you all for your work and your
commitment to the children and to the families of our country.
Thank you so much.
And I yield back.
Ms. Eshoo. The gentlewoman yields back.
It is a pleasure to recognize the gentleman from Montana,
Mr. Gianforte, for his 5 minutes.
Mr. Gianforte. Thank you, Madam Chair.
Ms. Zarecky, thank you for sharing your testimony today and
your story. As a father of four, I can only imagine what you
have gone through, and I am so sorry for your loss. And I
applaud your bravery for being here to tell your story to honor
Scarlett.
In your testimony, you said that we don't know how
widespread instances of sudden, unexpected death in childhood
are because there is a lack of specific ways to record these
deaths. I was hoping you could share with us, from the
perspective of a parent, what was the process like for you to
determine your daughter qualified as an instance of sudden,
unexpected death in childhood?
Ms. Zarecky. For us in particular, about a little less than
48 hours after Scarlett passed away, we heard the initial
results of her autopsy, which is, of course, that it was
undetermined, her cause of death. And then we waited a little
over 5 months to get the full autopsy and the full gamut of
tests back. And then, even then, her cause of death was
considered undetermined.
So there are, you know, a lot of different terms that do
relate to how these deaths are classified. And so that was--you
know, through that process and then being able to speak with
other families who experienced similar losses, that is how we
found that out.
Mr. Gianforte. And at a terrible time, where you wanted
answers, there was really just no certainty for you.
Ms. Zarecky. Yes. And to this day, I mean, it is really,
truly terrifying to know that I don't know what happened to my
daughter. And you want answers, you know? You want to know what
happened, but you also want to know that it is not going to
happen again.
Mr. Gianforte. Uh-huh.
Ms. Zarecky. And living with that uncertainty for myself,
for my subsequent daughter, for my husband, for my nephews and
nieces, it is really--you know, it has been 3 years today, and
I am just reliving, you know, all of the triggers. And we just
celebrated the second Christmas with my second daughter, and I
was reliving Scarlett's second Christmas, which she died
shortly after. So it has lasting impacts on me, just the trauma
associated with it.
Mr. Gianforte. Again, thank you for your bravery and being
here today.
Ms. Zarecky. Thank you.
Mr. Gianforte. On a related note, Dr. Beers, in your
testimony, you discuss how important death review teams are in
understanding how these terrible deaths occur.
Montana is a rural State. Could you talk about the
challenges that death review teams have in rural parts of the
country?
Dr. Beers. Yes. It is very difficult, right, because when
your populations are smaller and more spread out, your
expertise is a bit more spread out as well. It is there, but it
is a bit more spread out and perhaps harder to access
sometimes.
And so I think it does circle back to the importance of
some of the things highlighted in this bill, of training, of
standards, of support to be provided to death review teams
across all States, regardless of the makeup, regardless of
whether they are rural or urban. And so I acknowledge that it
is a different challenge, right----
Mr. Gianforte. Yes.
Dr. Beers [continuing]. And, I think, you know, is one of
the things that this bill helps to get at.
Mr. Gianforte. Yes. Good.
And, also, Dr. Beers, Montana is home to eight federally
recognized Native American Tribal governments. And it is
incredibly troubling that SUID and SUDC are so common amongst
Native American peoples. What can the Indian Health Service do
to better prevent these deaths?
Dr. Beers. Yes. No--and I think it does--and, again, it
goes back to some of the services provided through Healthy
Start: really taking the time and investing the resources to
evaluate families, to do intake assessments, to really get to
the heart of what challenges they are facing and what their
needs are, and then providing that individualized support to
help make sure they get there.
You know, you mentioned living in a rural State. Access to
care can be more difficult in a rural State because you have to
travel farther and you don't have as easy access to public
transportation or other things. And so, really, kind of, diving
into what those challenges and barriers are and helping to
identify solutions.
Mr. Gianforte. OK.
I have a couple seconds left. Also, Native American women,
as you noted, face higher rates of maternal mortality. Is
maternal mortality and infant mortality linked? And how does
fixing one affect the other?
Dr. Beers. Yes. There certainly are linkages, in that the
same influences on maternal mortality are very similar to the
influences on infant mortality. And so, if we address those
things, it will help both those issues.
Mr. Gianforte. OK.
Thank you very much for your testimony.
And I yield back.
Ms. Eshoo. The gentleman yields back.
It is a pleasure to recognize the ever-patient gentleman
from Massachusetts, Mr. Kennedy.
Mr. Kennedy. Thank you, Madam Chair. I am grateful for the
opportunity.
Thank you to our witnesses.
And, Ms. Zarecky, thank you for being here as well. I echo
the comments of my colleagues. I have a 2-year-old and a 4-
year-old. Difficult to listen to your testimony this morning.
And I wanted to start by saying, about a month ago, I was
at a coffee shop. I had just finished a meeting, and I was on
my way out. And, that evening, it was dark and it was raining.
And a gentleman, probably about my own age, maybe a couple
years younger, just grabbed me and asked me to read a letter
that he had scratched on a napkin as I jumped in the car.
And I got in and I started reading it, and it was a letter
about his son, Luke, who was 18 months old--my son at that
point was about 22 months old--who told your story. A
beautiful, bright, healthy, chaotic baby boy, fully vaccinated,
walking, talking, beautiful, who went to bed and didn't wake
up.
And I went back inside, and we talked for about a half-hour
or so. And listening to that young dad try to make sense out of
what happened, wrestle with the stigma associated with the loss
of a child and the judgment that came down on him and his wife
for the perception of having done something wrong, and not be
able to point to anything, and to still, as you articulated,
search for answers.
His request was that I cosponsor your bill. And, luckily, I
already had. But I think it highlights not just the obvious
need to try to ensure that we do everything we can to make sure
that this doesn't happen again but to make sure that parents
get answers and families get answers.
And one of the things that stuck with me from our
conversation was how he said, after searching for answers, they
were fortunate to come across a research-based program in
Boston that did help eventually diagnose a form of sudden,
unexpected death in childhood that was consistent with an
epilepsy pathway. But, still, largely unanswered.
What struck me was you had a young dad who was in tears who
was talking about how fortunate he was to have come across a
program that could help at least point him directionally to
some explanation about what happened with his son.
I have a letter from his parents--well, from Garrett and
Megan--that I wanted to introduce for the record, Madam Chair,
as well.
Ms. Eshoo. So ordered.
Mr. Kennedy. But I wanted to thank you, Ms. Zarecky, for
your courage and the strength that you show for Scarlett. So
thank you.
I also wanted to turn briefly, in the time that I have
left, to another story of a baby who will be turning a year old
next month. He was born far away from Massachusetts, and the
baby's esophagus is in two separate segments connected
abnormally to the windpipe.
Boston Children's Hospital, Dr. Beers, is one of two places
in the country that is capable of the surgery to correct that
particularly complex and complicated case. And the family has
been forced to reschedule that surgery three separate times
since August because of their confusion within the baby's home
State Medicaid vendor.
We know the diagnosis. We know we can treat it. We know
there are people that can conduct the procedure. And yet the
joint Federal-State nature of a Medicaid program prohibits
that, oftentimes gets in the way.
Six months ago, the baby could have had surgery to relieve
difficulty breathing and the pain that could result in trips to
the ER. But confusion over those Medicaid regulations regarding
out-of-State treatment for infants and children has prolonged
that baby's suffering and that of countless others.
So I know you are aware of similar stories, and I apologize
for not giving you a whole lot of time, but do you think it
would be beneficial to help simplify Medicaid screening and
enrollment for clinicians who are providing the highest quality
care, specialist care, to children, enabling them to get access
to treatment for rare illnesses that are only available at
specialty centers across State lines?
Dr. Beers. I can be very brief: Yes, we do support that.
Anything that can decrease the barriers to care and streamline
access to coverage, I would support that.
Thank you.
Mr. Kennedy. Thank you.
Thank you for being here.
Madam Chair, thanks for the hearing.
Ms. Eshoo. The gentleman yields back.
We thought, Mr. Kennedy, that the ACE Kids Act was going to
address the very situation that you just pointed out. So I want
to work with you to make sure that it is working. We worked so
long and so hard to get that legislation over the line, and
that was the full intent of it, and it is more than
disappointing to me to hear what you just said.
But, at any rate, we need to work on that, because that is
an impossible situation for a family to be in. No one can go up
against these programs and the Federal Government and the
bureaucracy and straighten them out themselves.
Now, the ever-patient, my pal, wonderful Member of
Congress, your Representative, Ms. Zarecky. We are fortunate to
have him in the Congress. We love Mike Doyle. So we are really
pleased to welcome him to our subcommittee.
And you have your 5 minutes for questioning.
Mr. Doyle. I want to thank you, Madam Chair, for your
kindness, and the ranking member, for allowing me to waive on
to the subcommittee today.
Stephanie, I want to thank you and your husband, Ryan. And
I saw Iliana walking down the hallway. She is a very active
young lady. But your testimony and your courage to come here
today--this is a difficult day, but you are here. What you had
to say touched every member of this committee.
This is a start of our regular order hearings. We will move
into markups in subcommittee and full committee. I think it is
safe to say, based on your testimony and the way you have
touched every member of this committee, that this is a bill
that will move quickly through the subcommittee and full
committee process. And, hopefully, we can get this out to the
floor and send this over to our colleagues in the Senate. And
this is a great way to honor Scarlett's memory, and I just want
to salute you for your courage in being here today.
I know we have spent a lot of time talking about sleep-
related deaths, but what happened to Scarlett is different. And
maybe Dr. Beers or Stephanie, can you help us understand the
difference or the distinction between SUDC or SUID and other
sleep-related deaths because of unsafe sleep procedures?
Explain the difference, because I think a lot of people see
this as some sort of, you know, unsafe practices in sleeping.
So if you could take a moment to maybe just explain that.
Dr. Beers. Absolutely. Yes, absolutely. And I appreciate
the question because I think it is an important clarification.
And I should say, I think often the reason that we talk
more about sleep-related deaths is because we have more data
and information on that, and we are better able to articulate
some of the reasons and causes behind it and what to do.
And I think that does, then, highlight one of the
challenges for sudden, unexplained infant death that may not be
sleep-related and/or sudden, unexplained childhood death, is
that we don't have that data to be able to talk about--as much
of that data--to be able to talk about how to prevent it.
And so SIDS, or sudden infant death syndrome that is sleep-
related is an initially unexplained death in infancy that then
is ultimately attributable to sleep positioning or to sleep
practices----
Mr. Doyle. Right.
Dr. Beers [continuing]. Or sleep related in some way. And
that is often determined through the death scene investigation
or death fatality review.
But there are many, many children who die unexpectedly in
infancy or childhood for whom we don't identify a cause and
that it is not sleep-related.
Mr. Doyle. Yes. And maybe that just leads into my second.
You know, what kinds of research are being done into SUID that
can be expanded to also older infants and children?
Dr. Beers. Yes. Yes. No, I think it is a great question. I
think Ms. Zarecky spoke, actually, to some of the most
important things that are happening and then also highlighting
that it is sometimes difficult to do research if you don't have
the data.
And so this bill focusing in on making sure that we are
starting with good data so that we can then build on that I
think is a really important piece of it, and also making sure
that we are investing resources to be able to do that research.
Mr. Doyle. And what kind of data is currently being
collected on SUID? And how might that also apply to older
children?
Dr. Beers. Yes. Part of the challenge is that it is
inconsistent. So there typically is data collected from autopsy
results and/or from death scene investigation, but there is a
bit of a lack of consistency in the way that is done across
jurisdictions. And so that makes it, then, difficult to bring
all those stories and cases together to start to draw some
conclusions from them.
Mr. Doyle. And, Stephanie, I have 48 seconds. I want to
give you a chance to add anything you would like to add or
say----
Ms. Zarecky. Thank you.
Mr. Doyle [continuing]. Since I am the last speaker.
Ms. Zarecky. Thank you. The party is ours, right?
Thank you so much. And, you know, I thank you so much for
being here. It means a lot to see a friendly face. This is very
intimidating. And----
Ms. Eshoo. We all have friendly faces here.
Ms. Zarecky. Well, a face that is a little bit more well-
known to me in my little town in Pittsburgh.
Ms. Eshoo. Yes, that is all right. I am teasing you.
Ms. Zarecky. But I just want to thank everyone for
listening to Scarlett's story.
And I do want to also thank you for pointing out the fact
that, of course, Scarlett's death is a sleep-related death,
but, as far as we know, it is unpreventable. We can't predict
it, and we can't prevent it.
So, while we have made great strides in sleep-related
deaths as related to potential hazards during sleep, we have
barely scratched the surface--barely scratched the surface on
what is happening to these other kids. Like, there is a reason
the numbers have gone down and then they have kind of
stagnated.
So, on the back of my shirt right now, I have the names of
hundreds of SUDC children who have been lost, and that is just
a small fraction of the children representing the families who
have just been shattered, who need answers. And we need systems
in place to collect the data so that we can do the good
research and we can figure out why this is happening. It really
is an area of public health that has just not been addressed.
Mr. Doyle. Thank you. Well, we will get this done not only
for you but for all those families that you have represented
here today.
Ms. Zarecky. Thank you.
Mr. Doyle. Madam Chair, thank you so much.
Ranking Member, thank you for your indulgence.
Ms. Eshoo. Thank you, Mr. Doyle, for your persistence on
the legislation and being so central in the life of Ms. Zarecky
and her family.
I think almost all of us are parents here, and it just
keeps running through our--that it hasn't happened to us, that
it could have, the unimaginable. These little angels, one
moment they are breathing, and the next minute they are not.
Well, the first panel, thank you to you. And on behalf of
all of my colleagues, I can't thank you enough for the
excellent testimony that you have given to us and the expertise
that you have shared with us. You can see that the committee
was fully engaged, asked excellent questions. And you have now
built a very sound foundation for the legislation. So thank you
to you.
I want to ask the staff to prepare the witness table for
the next panel. And we will get as much done as we can before
we have to depart for the classified briefing on Iran and Iraq,
which begins at, I believe, 1 o'clock in the Congressional
Auditorium. So let's prepare the table as quickly as we can,
please.
Thank you, first of all, for being here this morning and
waiting and listening, but I am sure you have benefited from
it, as did we.
So welcome to the second panel of witnesses.
Dr. Matthew Cooper is the director of kidney and pancreas
transplantation at the MedStar Georgetown Transplant Institute.
Thank you for being here.
Mr. Kevin Koser, a patient advocate on behalf of the
National Foundation for Ectodermal Dysplasias, thank you to you
for being here.
And Mr. Fred Riccardi--welcome to you--president of the
Medicare Rights Center.
Dr. Cooper, you are recognized for your 5 minutes of
testimony.
STATEMENTS OF MATTHEW COOPER, M.D., DIRECTOR, KIDNEY AND
PANCREAS TRANSPLANTATION, MEDSTAR GEORGETOWN TRANSPLANT
INITIATIVE; KEVIN G. KOSER, PATIENT ADVOCATE, ON BEHALF OF THE
NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS; AND FREDERIC
RICCARDI, PRESIDENT, MEDICARE RIGHTS CENTER
STATEMENT OF MATTHEW COOPER, M.D.
Dr. Cooper. Thank you, Chairwoman Eshoo, Ranking Member
Burgess, and members of this committee.
I will attempt to be brief. I know there are pressing
issues that are before this committee. I will say, it is an
absolute pleasure, a privilege, to be here. I am much more
comfortable in a hospital, in an operating room, so this is
outside of my boundaries, but I am----
Ms. Eshoo. This is our hospital and operating room.
Dr. Cooper. Yes, I understand.
I am representing hundreds of thousands of successful
transplant recipients; several hundred thousands who, actually,
are currently waiting for that call for the gift of life;
hopefully several million in the future that will receive a
lifesaving transplant; living donor families; those that have
given the gift of life at the decision of their deceased loved
ones; and countless transplant professionals around the country
who care tirelessly for these groups of individuals.
My name is Dr. Matthew Cooper. As mentioned, I am a
transplant surgeon. I do believe I have the best job in the
world in participating in sharing of that gift of life. I
actually serve as the director of kidney and pancreas
transplantation for the MedStar Georgetown Transplant Institute
here in the District.
I am also very much involved in a number of national
societies and patient-centered organizations, including the
American Society of Transplant Surgeons, the National Kidney
Foundation, the American Association of Kidney Patients, whose
voices are very important in this and who we have heard very
loud and clear, and a spokesperson for Honor the Gift, which is
a grassroots organization of professionals and patients who are
looking to push this legislation through.
As mentioned in many of the introductory comments, this
truly is a no-brainer. We believe that this bipartisan support
is very encouraging. And unlike some of the very difficult
conversations we had about maternal and fetal death--again,
back to some of the comments, almost Dr. Seuss-like, this is
nonsensical. And so we really hope that, at the end of this,
this is something that becomes very clear.
Organ transplantation is by far a medical success story for
the patients that are able to receive an organ transplant. It
increases not only their length of life but also their quality
of life, not only for they but for their family. Important to
recognize that kidney disease, kidney failure is not an
individual problem. It is a family problem.
But, unfortunately, everybody who needs a kidney transplant
does not receive one. The supply-and-demand problem is real
here in the United States. Over 100,000 people waiting for
kidney transplants. Unfortunately, about 20,000 a year are
transplanted. And, unfortunately, there remains, then, a
dramatic shortage of organs.
Unfortunately, the current Medicare policy serves to
exacerbate this issue. Under current policy, after that 36
months following a very successful transplant, Medicare
coverage for immunosuppressive medication goes away. That
becomes a significant problem for many patients, 80 percent of
which are primary Medicare beneficiaries.
And I have witnessed this on a personal basis. I can give
many examples. A very simple one that several months ago came
through my doors: A young mother of three who was covered by
Medicare with a supplemental insurance, who was doing very well
following a transplant, unfortunately lost her job and, with
that, lost her supplemental insurance. She was, therefore, only
covered by Medicare. You can imagine where this story goes.
Three years following a successful transplant, she,
unfortunately, was unable to pay for her medications. And while
some might say that is her fault for not coming forward and
letting us know that this was a problem, recognize that life
goes on for these patients. They have families to care for,
they have other bills to pay, and, unfortunately, they are a
little bit embarrassed that they are unable to care for their
own medications.
And so she lost her transplant. She is back on the list,
and she is one of the potential only 10 percent of people that
will receive a second transplant because of the sheer numbers
of supply and demand.
And this is not an only story. Across the country, well
over 70 percent of programs can talk about at least one patient
who has lost their organ secondary to insufficient coverage.
From a medical standpoint, it makes no sense, and also from
a financial standpoint, we have lots of information now that
demonstrates that we can save Medicare money. This is an
absolute win for all of us. It costs about $86,000 a year for
dialysis. Up-front costs for the transplant are around
$100,000. But each year of immunosuppressive coverage is about
$2,000, $2,300 a year; with generics and patient support
programs, perhaps even less. And, again, this own government
has recognized the cost savings perhaps being close to $300
million. That is a tremendous win for all of us.
And so, simply put, this legislation can potentially save
kidneys, it can save lives, and it certainly saves the
Government money.
And I applaud Dr. Burgess not only for this but for all the
things that you have done for kidney care. Please know that
your efforts have not gone unnoticed.
And I would encourage Chairman Eshoo and the rest of this
committee to please help us support this bill. Let's bring this
across the finish line. It is time to put the exclamation point
on this.
Thank you.
[The prepared statement of Dr. Cooper follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Ms. Eshoo. Thank you, Doctor. This bill is going to move.
It has to. And it really needs to be adopted by the Congress,
both houses, and sent to the President for his signature. You
are absolutely right. It will make all the difference in the
world for not only patients but also, you know, the dollars
that are attached to this. It is common sense. I never realized
that this was the case. So thank you for your testimony and
your patience today.
Mr. Koser, welcome. Thank you for your patience in waiting
to testify. You have 5 minutes to do so.
STATEMENT OF KEVIN G. KOSER
Mr. Koser. Wonderful. Good afternoon, Chairwoman Eshoo,
Ranking Member Burgess, and distinguished members of this
committee. I want to thank you for this opportunity to speak
with you about a cause and bill that are very close to my
heart.
My name is Kevin Koser, and I am a cochair of the National
Foundation for Ectodermal Dysplasias' Family Advocacy
Committee. I am here to ask for your support in advancing H.R.
1379, the Ensuring Lasting Smiles Act, on behalf of the
estimated 3 to 4 percent of Americans just like my 4-year-old
son, Kannon, here in the audience, who are diagnosed with a
congenital anomaly.
The bill currently has 266 bipartisan cosponsors, including
21 members of this subcommittee, and the identical Senate bill
has 37 bipartisan cosponsors.
This bill will ensure that all private group and individual
health plans provide coverages for Americans who are born with
congenital anomalies and then require medically necessary
treatments to restore function to missing or nonfunctioning
body parts.
The intent of this bill might seem like common sense. It
is. Health insurance should approve claims for medically
necessary treatments of congenital anomalies.
In many cases, that is happening, especially when you think
of the more well-known anomalies such as heart defects or spina
bifida. The problem is that health insurance systematically
denies or delays medically necessary treatments for a host of
other congenital anomalies, such as those that affect the
mouth, teeth, and the oral cavity.
Insurers call these treatments cosmetic and not medically
necessary, despite a medical diagnosis and physician-approved
care plan. Or insurers state that these are not covered
benefits because they appear to be dental-related, even though
they are directly linked to the underlying congenital anomaly.
These loopholes must be closed.
My family's story serves as an example of this struggle.
There were no signs that anything was wrong when Kannon was
born. However, a doctor recognized some of the clinical traits
of ectodermal dysplasia when he was 9 months old, and genetic
testing at the age of 1 confirmed his diagnosis.
Ectodermal dysplasia is a congenital anomaly that affects
development of the hair, skin, sweat and saliva glands, teeth,
and sometimes other body parts. But it is specifically issues
with the mouth, teeth, and oral cavity that has galvanized
support from our families to lead the charge in advocating for
this bill. Teeth are missing or completely absent. Their
eruption is delayed, their enamel is weak, they are cone-
shaped, and the jawbone and gum line recede and decay.
Kannon is now 4 years old and just sprouted his first
tooth. X rays indicate that he only has four total teeth. A
child without ectodermal dysplasia typically grows about 20,
and an adult grows between 28 and 32.
Now, please put yourself in Kannon's shoes and imagine the
drastic impact this has on your health and daily life. Your
diet is severely restricted. Therefore, you lack proper
nutrition and are likely underweight or considered failure to
thrive. You will choke even on soft foods, because you cannot
chew. Your inability to chew results in gastrointestinal and
digestive complications. You struggle to speak properly. Your
jawbone and gum line decay and recede from the lack of teeth.
You will need a team of physicians across multiple medical
disciplines, all of whom tell you that your health is suffering
because you don't have a mouth full of functioning teeth.
While there is no cure, there are several common treatments
that are medically necessary in order to manage these issues.
These treatments are not optional: first, prosthetic teeth or
dentures starting between the ages of 2 and 5 and replaced
every 1 to 3 years as the mouth grows; second, surgeries to
reconstruct and replace the decaying jawbone and gum line; and,
third, dental implants that are surgically installed once an
individual's mouth stops growing, usually around age 20.
Last Christmas, Kannon asked Santa Claus for teeth so he
could, quote, ``chomp big bites'' of food like other kids in
his preschool class. Now, please think about that. Our 3-year-
old boy, who loves dinosaurs, dragons, and superheroes, asked
for teeth for Christmas.
We started pursuing dentures for him, but imagine the
heartbreak when our health plan told us that, quote, ``any
services relating to his teeth or intraoral structure
supporting the teeth are not a covered benefit'' even though
that same policy has mandated coverages for medically necessary
treatments of congenital anomalies.
We are not alone. Aidan, a 14-year-old boy from Wisconsin,
was first told that his oral treatments only served a cosmetic
purpose, and other treatments were denied simply because they
addressed issues in his mouth. Alli, a 13-year-old girl from
Iowa, was told that her recent surgery to install implants was
not a covered benefit due to the inappropriately applied dental
exclusion. And Karl, a 47-year-old father from Minnesota, has
fought for decades with his health insurance about the medical
necessity of a fully functioning mouth, even when that same
policy stipulates that accidental injuries to the mouth are
covered benefits.
The financial burden of paying for this care 100 percent
out of pocket is substantial, especially when our families are
already paying for congenital anomaly coverages through our
monthly premiums. So why are health insurers bypassing clauses
within their own policies, and why are the mouth and teeth
being separated from the rest of the body when directly related
to a congenital anomaly?
We must close these loopholes that insurers use to bypass
State congenital anomaly laws and their contractual obligations
to approve claims for medically necessary treatments of
congenital anomalies.
Thank you.
[The prepared statement of Mr. Koser follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Ms. Eshoo. Thank you for your testimony. Powerful
testimony.
Mr. Riccardi, it is a pleasure to welcome you, and you have
5 minutes for your testimony.
STATEMENT OF FREDERIC RICCARDI
Mr. Riccardi. Good afternoon. I am Fred Riccardi, president
of the Medicare Rights Center. Medicare Rights is a national,
nonprofit organization that works to ensure access to
affordable healthcare for older adults and people with
disabilities through counseling and advocacy, educational
programs, and public policy initiatives.
Thank you for the opportunity to speak with you today about
two bipartisan bills that can help improve healthcare coverage
and outcomes for people with Medicare.
One such bill, the BENES Act, introduced by Representatives
Ruiz, Bilirakis, Walorski, and Schneider, would update Medicare
enrollment rules for the first time in over 50 years to better
empower beneficiaries to make informed coverage choices. These
modernizations are needed due to major changes in how people
experience their initial Medicare eligibility.
Today, as in 1965 when the program was created, most people
are automatically enrolled in Medicare Part A, the hospital
coverage benefit, and Part B, outpatient coverage, when they
turn 65 because they are receiving Social Security benefits.
However, as an increasing number of Americans are working
longer and delaying Social Security benefits, in 2016 only 60
percent of Medicare-eligible 65-year-olds were taking Social
Security, compared to 92 percent in 2002. That is a big
difference.
Unlike those who are automatically enrolled, this growing
cohort of employed older Americans must actively do so. Most
can sign up for Part A at any time without a penalty, but
enrolling in Part B is much more complicated. Enrolling
requires that individuals understand when to sign up during
Medicare's time-limited enrollment windows, how their current
insurance might work with Medicare, and what penalties may
result if they delay enrollment, even by honest mistake.
And the stakes are, indeed, very high. The consequences of
any missteps can be significant and may include a lifetime Part
B late-enrollment penalty. This penalty accrues at 10 percent
for every year the individual should have been enrolled but
wasn't. Currently, there are approximately 760,000 people who
are paying a Part B late-enrollment penalty, and the average
amount represents a 30 percent increase in the monthly premium.
They may also face harmful gaps in coverage and exposure to
high out-of-pocket costs. Because Part B enrollment periods do
not align, coverage starts later, and beneficiaries may have to
wait several months before coverage begins. This is true for
the initial enrollment period--this is the window around
someone's 65th birthday--and then also for the general
enrollment period, the period that we are in right now, where
there is a larger gap in coverage of up to 7 months.
Americans who have other insurance when they become
eligible for Medicare have even more to wade through, like
whether Medicare will pay primary or secondary and whether they
can delay Part B without a penalty.
The rules are so confusing that HR experts in employer
benefits departments struggle to understand them. And clear
advice from the Federal Government to those approaching
Medicare eligibility would help, but no such notice is required
at this point. As a result of this information vacuum, among
the most frequent calls to our national consumer help line are
those from people or on behalf of people with Medicare who are
struggling to enroll into Part B and experiencing severe gaps
in coverage.
Without immediate action, a growing number of Americans are
going to experience these pitfalls in the current system.
People are working longer and also delaying Social Security to
collect their full retirement benefit, and more and more
beneficiaries are going to face these critical Part B
enrollment decisions.
Eight former CMS Administrators who served in both
Democratic and Republican administrations endorse the BENES
Act's commonsense solutions, which are needed now more than
ever.
In part, the bill, for the first time, would require the
Federal Government to notify individuals about eligibility,
update enrollment timelines to eliminate unnecessary and
harmful breaks in coverage, and inform future alignment
strategies.
I would also like to take some time and speak to H.R. 3935,
the Protecting Patients Transportation to Care Act. Led by
Representatives Carter, Cardenas, Graves, and Bishop, this bill
would strengthen healthcare access for people with Medicaid,
including some of the 12 million enrollees who are also
eligible for Medicare.
And so, for these people with Medicaid, dual enrollees who
also have Medicare, they tend to have very complex healthcare
needs that require regular visits to medical appointments. And
reliable transportation to and from these visits is absolutely
crucial but not always readily available. In these instances,
Medicaid's NEMT benefit can be a lifeline, facilitating access
to needed care for those who have no other way to get to
medical visits.
And in some States, like Georgia, there are innovative
things happening where people are able to access prescription
drugs. Codifying this benefit into Medicaid statute would
ensure that enrollees have meaningful health coverage going
forward.
Thank you.
[The prepared statement of Mr. Riccardi follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Ms. Eshoo. Thank you, Mr.Riccardi, for your testimony.
To each one of you, thank you.
And we are going to ask you for some patience. You can have
a somewhat leisurely lunch. We are going to break now and
attend the classified briefing. And I would say we will
return--the House is going to go back into session at 2:15, so
I think that is a safe time for us to come back into session
and give us time to get back from at least an hour of the
classified briefing.
So we will see you in a bit. Have a nice lunch. Thank you.
[Recess.]
Ms. Eshoo. OK. Good afternoon again. Thank you to or second
panel of witnesses for your patience in staying with us. We
have now concluded the opening statements, your opening
statements, and we will move to Member questions. And I will
recognize myself for 5 minutes to get the ball rolling on that.
Dr. Cooper, thank you again. You gave excellent testimony
today. Eleven thousand Americans--and you already know this,
but I think it is important to state for the record that 11,000
Americans will die waiting for transplants this year. In the
meantime, the Medicare program is putting people who are lucky
enough to have a kidney transplant at risk by cutting off their
coverage for immno--immunosuppressive drugs. Why is that such a
tongue twister?
Why do you think this has gone on for 50 years? I can't
help but ask that question.
Dr. Cooper. Yes. I knew you were going to ask me that
question, and I wish I had answers for it.
Ms. Eshoo. I mean, because there are advocates. There have
been transplants, people waiting, people knowing that they were
going to die because of the way this thing is set up. Why has
it taken 50 years?
Dr. Cooper. Well, I think the easy answer, Madam
Chairwoman, is that, when you look at Medicare, I am not sure
the A's, the B's, and the D's sort of all communicate with each
other all the time, and what is potentially a loss in one area
is a gain in the other. And, unfortunately, it probably took
your examples and probably the voices of those many patient
organizations that I talked about to continually bring this up,
for folks to sit down and finally put all the numbers together
in one place and recognize, again, overall this is a cost
savings. But, again, beyond that, you know, this really is an
ethical and moral obligation now.
Ms. Eshoo. It is. It certainly is.
Let me ask you this, because you are a transplant--you do
transplants. Do you think that--the only hearing I ever
remember since I came to Congress and have served on this
committee was a hearing when I was in my second term. So that
would have been 1995, 1996, and it was an examination of what
are--of the system that we have that allocates----
Dr. Cooper. Organs.
Ms. Eshoo [continuing]. Organs. Are you satisfied with how
that works in our country?
Dr. Cooper. That is a great and very timely question, Madam
Chairwoman. So the problem that we started this conversation
with, the supply and the demand that has sort of led to some--
--
Ms. Eshoo. Because there are very few that get one, get a
part, get an organ.
Dr. Cooper. Yes, ma'am. And so I think we as a transplant
community, we as the public, you know, continue to seek for
better ways to make sure that that valued and cherished
resource gets to the people that need them the most. There is
currently afoot an effort to try and change the allocation
system so that we remove geographic boundaries, which is
currently the primary way in which organs are allocated, so
that we, in fact, are getting the organs to where they need to
get to.
We hope to eventually get to a point where we don't have
that supply-and-demand problem, but until we get there, there
is a need to continue to look at more ingenious ways to be able
to assure that the organs are getting to the people that need
them.
Ms. Eshoo. Do you think there should be an reexamination of
the system that we have?
Dr. Cooper. Well, I think there--it continually is a
reexamination, Madam Chairwoman.
Ms. Eshoo. No, but--at Congress.
Dr. Cooper. Oh, I actually think that the groups that have
been contracted to oversee organ transplants through HRSA,
UNOS, the SRTR actually recognize, again, that there is, you
know, an opportunity for us to do better. We certainly would
like to continue to have the support, things like the Executive
order, things like Congress to continue to move those
initiatives forward, but I truly believe the passion that
exists within the transplant community is fairly capable of
moving things forward and looking at other ways to do things
better, particularly the allocation.
Ms. Eshoo. Thank you.
Mr. Riccardi, one of the--a problem you identified is that
CMS doesn't notify soon-to-be-eligible Medicare beneficiaries
about enrolling in Medicare if they don't receive Social
Security benefits. Seems to me that this could be fixed
administratively. Why doesn't CMS do this notification now?
Mr. Riccardi. The practical, you know, solution to
providing the notice involves not only CMS but also Social
Security and the IRS.
Ms. Eshoo. Why can't they do it? Is there something that--
does there have to be a statute?
Mr. Riccardi. There has to be--yes.
Ms. Eshoo. There has to be a statute?
Mr. Riccardi. There has to a statutory change to provide
this notice. And what we have observed over time, now that
people are working longer and delaying their Social Security,
people are----
Ms. Eshoo. They run into this.
Mr. Riccardi [continuing]. Missing their Medicare
enrollment.
Ms. Eshoo. Yes. Another issue identified is that Medicare
coverage is delayed until after the enrollment period ends. Why
doesn't CMS begin Medicare coverage on the first of the month
after a person enrolls, similar to how private business
enrollment works?
Mr. Riccardi. Exactly. That is the most commonsense
solution, and I think this is the point where the enrollment
periods just need to be modernized. Most Americans are now used
to enrolling in coverage and having it start the following
month, and that is what this bill would do.
Ms. Eshoo. Right. Thank you very much.
The Chair now recognizes Dr. Burgess, the ranking member of
our subcommittee, for his 5 minutes of questions.
Mr. Burgess. I thank our witnesses for staying with us
today, and these are important topics that we are talking
about.
Dr. Cooper, you have referenced the passion in the
transplant community. I just have to tell you, when I went to
the President's executive order on kidney care, I didn't figure
there would be many people that showed up for that. Who is
going to be there? That place was packed, and it was packed
with very passionate advocates and it was--it really brought
home to me, and although this has been a long-term fight that
we have done on this immunosuppressive bill, it is important
work and it needs to be done. It needs to get across the finish
line.
Just in general, take us back to 1972 or when the End Stage
Renal Disease Program started. Why was this--why was this
incorporated into the program this way?
Dr. Cooper. Again, I want to take the opportunity to thank
you for everything you have done, Dr. Burgess. It has been, I
understand, a very difficult and challenging battle for you,
and I am hoping, again, together we can see this through to the
finish line.
I think the answer to your question is that perhaps there
wasn't the appreciated unintended consequences that would come
about through this. Like I said, the way that Medicare was set
up, the charges for the actual procedure and, you know,
everything that came soon thereafter was not fully appreciated,
you know, by another part of Medicare that paid for the long-
term care of the post-transplant patient.
And like I said, you know, in the responses to Madam
Chairwoman, I think we didn't really take time to sit down
together and say how do we make this whole and recognize it
as--bring it all together will ultimately result in a cost
savings for all this. So I think it was just we kept speeding
forward with transplants, we kept demonstrating the successes.
And perhaps even the numbers that were shared earlier of the
grafts that were lost from lack of immunosuppressive coverage
did not fully appreciate the significance of the problem. There
were several hundred. There is probably more like several
thousand. And it really is now coming, I think, full circle,
particularly with the voices, the patient organizations that
said, you know, we have to recognize really the unintended
consequences in how we are losing too many grafts from
something that is absolutely preventable.
Mr. Burgess. And it is almost as if we were sugarcoating
the issue when we talk about, you know, loss of a graft. I
mean, this is a bad deal when it happens to someone. I mean,
they have been lucky enough to get a transplant either from a
living donor--good news is God gave us each two kidneys, and
you can give one to someone else if you choose--or somebody got
a cadaveric donor, and they were on a waiting list, they waited
a long time to get a match, got a tissue match. They were able
to go.
And now for want of--I mean, cyclosporine now is, what,
$250 a month? I mean, it is not a big expense. It is not like
some of the other things we talk about in this committee where
it is $65,000 a month to be on your medicine. This is
relatively manageable, and yet for that small investment, the
agency is letting these patients go into something for which
they cannot recover without another surgery.
Dr. Cooper. I understand. We I think, unfortunately, look
at the expression of gifts of life and don't really recognize
that that is exactly what it is. This is a gift. It does
provide new life for individuals, and the fact that we are
unable to protect that gift with, like you said, something that
is truly manageable and truly affordable and recognize, again,
that with each graft lost, that potentially puts someone else
on an already list that is overwhelming and prevents other
people from potentially receiving a graft.
And so, again, if we just figure out that we can get out of
our own way and protect a lot of the kidneys that are currently
successful, being transplanted, we are going to make, I think,
a potential effort towards the same thing that the President
put forward on Executive order of trying to increase the
numbers of transplants by 2023.
Mr. Burgess. Now, you are a transplant surgeon. Do you do
other transplants besides renal transplants?
Dr. Cooper. I do pancreas transplants also and combinations
of the two, particularly those that have end-stage renal
disease from type 1 or type 2 diabetes, another remarkable
operation that changes people's lives.
Mr. Burgess. So somebody gets a transplant remote from the
ESRD Program, somebody gets a heart transplant, what happens to
them? Do they get--I mean, I presume their regular health
insurance will cover their antirejection drugs?
Dr. Cooper. Yes. The majority of that, like I said, for
kidney transplants, you know, far over 80 percent of our
patients are Medicare primary. It is a little bit different for
the other organs. Their private insurance is probably much
better set up to take care of those organs. I think there is
effort afoot after this gets approved to potentially make
certain that we are not losing other organ systems through the
cracks also. But primarily, number one, because of the volume
of kidney transplants and the primary payer being Medicare do
we see this as such a significant problem in the kidney
population.
Mr. Burgess. OK. So ironically we may have disadvantaged
people by setting up the ESRD Program who were covered by
commercial insurance. Perhaps their immunosuppressant would be
covered.
Dr. Cooper. That is certainly one way of looking at it,
sir, yes.
Mr. Burgess. OK. Mr. Riccardi, I just have to ask you,
because it came to my attention in a constituent meeting last
week, about the COBRA not being credible coverage and the gap
that some people can fall into. You have kind of alluded to
that. Can you speak to that a little bit?
Mr. Riccardi. Yes. Yes, I can. And this is another aspect
of where the eligibility periods for Medicare haven't been
modernized now that there is the existence of COBRA. Currently,
if somebody has Medicare part A and they enroll in COBRA, they
will be continuing to pay their COBRA premiums, and then
typically they will learn from either the health insurance plan
or from a physician that the COBRA plan is no longer active or
refuses to pay, and then they are locked out of coverage.
And it reminds me--every day we are hearing from people who
are calling our helpline, but it reminds me of one individual
that I had worked with many years ago. She happened to be from
Texas, and she had been paying her COBRA premium. And then,
when she was ready to enroll in Medicare, she realized that she
couldn't. And she hadn't received any information about needing
to enroll and was essentially misinformed by her employer, and
this was a large company.
And typically we hear from people after they have already
spoken to Social Security, Medicare, they have reached out to
their elected officials, and they are desperate for needed
assistance. And so we do increasingly over the last several
years have more and more calls from people who are on COBRA.
Either they have been paying these premiums, which is, if
anybody has seen a COBRA premium, it is much more costly than a
Medicare part B premium. And so most people are scrambling to
get into Medicare, but then they are locked out of this
punitive gap in coverage.
Mr. Burgess. OK. I don't think we addressed that in this
bill, but that is something we do need to take on at some
point. I thank you.
I will yield back.
Ms. Eshoo. The gentleman yields back.
I am just stunned that no administration that I know of has
ever come forward in these areas saying we need a statute to
fix this. I think that is what is jaw-dropping to me. I have
never had a constituent, in terms of organs and what we are
trying to correct with the legislation, ever point this out to
me. But what stands out is we are in Washington, DC, is that no
Secretary of Health and Human Services has ever come forward
and said this needs to change and we need you to write a new
statute.
I now would like to recognize the gentlewoman from
California, Ms. Matsui, for her 5 minutes of questioning.
Ms. Matsui. Thank you. My microphone seems to be very
powerful.
Older adults today face a challenging healthcare landscape
with rising medical costs and fixed financial resources. It is
unacceptable that Medicare's complex enrollment process often
further exacerbates these challenges.
Mr. Riccardi, in your testimony, you note that
modernizations to the part B enrollment process are needed due
to a shift in how people are experiencing their initial
Medicare eligibility. Can you elaborate on some of the factors
responsible for this shift?
Mr. Riccardi. Sure. As people are working longer and the
Social Security eligibility age for full retirement benefits is
now separate--the Medicare eligibility, someone is eligible at
age 65, and currently for someone who is retiring, they have to
wait till age 66 to collect full retirement benefits, and that
age will increase to 67. So increasingly there are fewer people
who are taking their Social Security right now, and these
people are going without an individual notice.
And what the BENES Act will do are three key things. First,
they just will simply provide a notice about somebody's
upcoming Medicare eligibility prior to age 65. They will--it
will inform people about the basic rules related to Medicare,
including this late enrollment penalty. So it will prevent
people from incurring a late enrollment penalty. And, lastly,
it is going to eliminate this disastrous gap in coverage that I
was just speaking about by ensuring that people who do enroll
into Medicare can have their coverage start the following month
or the current month.
Ms. Matsui. Right. Absolutely. And it is important to me
that, as we recognize the modern realities of how Americans are
aging and transitioning through life stages, that we need to
streamline part B to reflect these realities, and I think it is
time to do that certainly.
Mr. Koser, thank you for your testimony today. I appreciate
it very much. I am grateful you are here today. It is so
admirable you are advocating for many of the patients and
children across the country.
Mr. Koser, can you tell us a little more about your journey
and how you came to be involved in advocacy?
Mr. Koser. Thank you, Congresswoman. I appreciate that. So
Kannon is 4 years old. We had no family history of ectodermal
dysplasia. We had never heard of it until the doctor at
University of Virginia mentioned it to us. It was at that point
obviously I got heavily involved with the National Foundation
for Ectodermal Dysplasias.
What I found there was that there was a systematic issue
across this entire country where people affected not only by
ectodermal dysplasia but other congenital anomalies were
running into these issues, despite maintaining a full
comprehensive health insurance plan.
For Kannon specifically we are very early in his treatment
plan right now. We have started trying to pursue these dentures
for him. Got rejected in the initial denial from insurance. We
plan to pursue them further. We are going to end up having to
pay 100 percent out of pocket for him probably in the next
several months. We are waiting for his first tooth to fully
erupt. That will cost thousands.
But I just wanted to not only represent Kannon and
ectodermal dysplasia, but within the written testimony you will
see there is about 46 other organizations representing
different disorders and congenital anomalies that are facing
these same issues.
Ms. Matsui. And the health plans often deny these claims,
right?
Mr. Koser. Correct.
Ms. Matsui. OK. You know, although all 50 States already
have some sort of congenital anomaly law, it is really clear
from your testimony that State regulation alone is not enough
to ensure coverage for treatment. Can you expand on how some of
these shortcomings occur and how Federal policy will help
reenforce State protections for congenital anomalies?
Mr. Koser. Certainly. And thank you for that. I think it is
important to understand the foundation of this bill. As you
mentioned, all 50 States have statutes that already exist, many
of them existing for decades, regarding that any insurance plan
issued and regulated by the State must include medically
necessary treatments of congenital anomalies. Those laws are
written in open-ended ways as if all congenital anomalies are
to be treated equally.
Those plans, otherwise known as fully insured plans, the
State-regulated plans, there is only approximately 50 million
Americans with such plans. The flip side and the other
important piece here is to note that self-funded or self-
insured plans, which are regulated at the Federal level through
ERISA of 1974, there are 110 million Americans with such plans.
These are private, employer-sponsored health plans, regulated
at the Federal level. Beyond that, both types of plans, fully
insured and self-funded, are both overwhelmingly telling us
that within their policies we have mandates for coverage of
medically necessary treatments related to congenital anomalies.
It is just these loopholes. That is the only way that the
insurers can bypass those things.
Ms. Matsui. OK. Fine. Thank you very much, and I know how
we must come forward to address these loopholes. And thank you
very much for being here today. Thank you.
Ms. Eshoo. The gentlewoman yields.
It is a pleasure to recognize the gentleman from Florida
who is sitting in the ranking member's chair, my friend Mr.
Bilirakis, for his 5 minutes.
Mr. Bilirakis. Thank you. Thank you, Madam Chair. It is an
honor to sit in this chair next to you as ranking member, even
though it is probably for only 2 minutes. I will take it.
Again, Mr. Riccardi, complex Medicare enrollment rules and
lacking notification costs tens of thousands of older adults
and people with disabilities that face lifetime fines--which I
think is ridiculous--coverage gaps and other harmful
consequences. With fewer people automatically enrolled in
Medicare and 10,000 baby boomers aging into Medicare each day,
more people new to the Medicare must actively enroll in the
program.
In your estimate, what percentage of seniors today have a
proper understanding of their current Medicare eligibility and
the enrollment process?
Mr. Riccardi. So thank you for your question. And, you
know, currently as more and more people are working longer, you
know, there are millions of people who are not well informed
about their Medicare coverage because they are not receiving
any notification about that. They are relying on information
from HR departments, from benefit administrators, from
commercial insurance brokers.
And so, currently, there are, you know--approximately only
60 percent of people are automatically enrolled into Medicare.
So that is millions of people who are going uninformed about
these basic enrollment rules and the penalties, as you had
mentioned, these lifetime penalties associated with them. And
this problem is only going to snowball, as you mentioned, with,
you know, 10,000 people every day turning 65.
Mr. Bilirakis. Yes. So it looks like we have an easy
solution here with this bill.
Mr. Riccardi. Yes, very straightforward.
Mr. Bilirakis. Again, can you explain how seniors might
confuse the merits of delayed enrollment into Social Security
with late enrollment into Medicare? I mean, it is complicated.
Mr. Riccardi. It is very complicated.
Mr. Bilirakis. Yes.
Mr. Riccardi. And so, you know, the people who are
receiving their Social Security benefits, enrollment is
automatic and it is streamlined. People are automatically
enrolled in part A and part B, and they can choose a drug plan
or Medicare Advantage. For older adults who are continuing to
work or who are waiting to collect their full retirement
benefit, they have much more to consider, whether Medicare is
going to be primary or secondary. And then they are juggling
multiple enrollment periods--an initial enrollment period, a
special enrollment period, a general enrollment period--and
none of these periods are aligned.
So what the BENES Act will do, it will prevent many of
these errors from occurring by providing a simple notification
a few years out before someone turns 65 versus individuals kind
of scrambling after they have turned 65 and realize that they
have been working their entire life, they have had insurance,
and then once they are eligible for Medicare, they are locked
out of the program for several months. It is very unfair.
Mr. Bilirakis. As far as--so, again, you know, obviously
people have to have a sense of responsibility. But how are they
going to be informed? We are talking about emails. We are
talking about letters, hopefully with big letters, big font
because I have a hard time, I need big font, and I will be a
senior pretty soon.
Mr. Riccardi. Well, one thing that I have observed over the
years and what we have heard from our helpline clients is that,
when Social Security or Medicare sends a mailing, people open
it and they read it. And what the BENES Act will do, will
provide notification as part of somebody's Social Security
annual award statements. And for many of you, if you have
spoken to someone who is near retirement or thinking about
retirement, they are starting to wonder, well, how much can I
collect at 62 and 65 and 67 and 70.
And so providing this information as part of that notice
will ensure that people are obtaining it, and then they can
make more informed decisions around whether they should enroll
into Medicare part B.
Mr. Bilirakis. Thank you very much.
Madam Chair, the BENES Act is important to help individuals
who are approaching Medicare eligibility, but as we all are
aware, there are many issues that beneficiaries face once they
are enrolled in Medicare--and I am sure you will agree--and
begin accessing services and filing claims. Once those have to
do with the--one of those things that has to do with Medicare
is reimburse in its secondary payer status. That is confusing
too.
I cosponsored a bill with Congressman Kind, and it is
called the--well, it's H.R. 1375, the Provide Accurate
Information Directly, or the PAID Act, that would help achieve
efficiencies for beneficiaries, build better information
sharing, again, through better information sharing. I would ask
members of the committee to consider that particular bill and
maybe cosponsor the bill.
And I will yield back, Madam Chair. Thank you.
Ms. Eshoo. The gentleman yields back.
I now would like to recognize the gentleman from Oregon,
Mr. Schrader, for his 5 minutes of questions.
Mr. Schrader. Thank you very much, Madam Chair. I
appreciate it.
Mr. Riccardi, thank you very much for taking the time to be
here today and speaking with us on these important problems in
Medicare. The BENES Act is a great piece of legislation. We are
a big supporter of the BENES Act, and your testimony speaks to
the reasons that we need to do legislative solutions.
I also have introduced a bill, bipartisan bill, with some
of the colleagues here on the Energy and Commerce Committee, as
well as others, dealing with the Medicare Enrollment Protection
Act. It is much along the lines of what you and Chairman
Burgess just discussed. I became personally aware of these
types of situations shortly after I first got elected back in
2009. A constituent of mine, Bill Bergman, came to me, and like
many Americans we have just talked about, he worked past the
age of 65. He got COBRA coverage, a voluntary retirement
package and COBRA through his employer. Felt he was in pretty
good shape. Then, you know, fast forward, he assumed--he
actually asked, ``Could I switch to Medicare after getting off
of COBRA?'' Was given inaccurate information, and he was really
surprised when he faced lack of coverage when his COBRA
terminated. And he tried to get Medicare, because there was no
enrollment period for him to get Medicare.
And that is a huge problem, one of the many problems that
we have talked about here today. And he was subject to the late
enrollment penalty as a result of that.
The bill I have introduced, H.R. 2565, with Mr. Bilirakis,
Mike Thompson, and Vern Buchanan, provides a permanent remedy
to folks who face barriers to enrolling in part D and penalties
due to electing to utilize COBRA coverage after they are
Medicaid eligible. Basically, what it does is, at the
conclusion of Medicare--excuse me--of COBRA coverage, that
would be considered a qualifying event for a new enrollment
period. So they would be able to enroll and get coverage within
a month of, like we just talked about is common in a lot of
other plans.
I would hope that, while the BENES Act goes forward, this
would be a nice complement. And I wonder if you would agree
that this is probably a nice complement to the BENES Act and
perhaps could be a great amendment to work into this
legislation to further deal with some of the Medicare
enrollment problems that we are seeing.
Mr. Riccardi. Yes. I agree that I think it is important to
look for strategies and solutions to individuals who have other
types of employer coverage, extensions of that coverage, like
retiree insurance or COBRA coverage, to allow for a special
enrollment period.
Again, these are many people who have done everything
right. You know, they have worked a long time. They have had
coverage through their employer. They have kept continual
coverage, because as we age, you know, people do not want to
have gaps in coverage or periods of time where they are
uninsured, and then it is a surprise when they can't enroll.
It reminds me of a client that Medicare Rights had worked
with many years ago who had worked for a very large company,
and he was enrolled into a retiree insurance and was informed
that he did not need to have Medicare part B because he was
going to be taken care of. And so many of us can kind of look
back and remember the time where, if you did have insurance,
you know, a company could guarantee it to you for life. Well,
you know, for this individual, you know, eventually he
developed stage IV cancer, and then the COBRA coverage began to
deny payment and he was forced to, you know, personally take
out a reverse mortgage to pay for his care to cover himself
during that gap in coverage.
And I remember speaking to him and his daughter and how the
family really struggled, and for him, he was less concerned
about himself but more about the financial impact that it was
going have on his wife.
Mr. Schrader. Very good. Very good story also.
So I would hope the leaders of the committee would take
into consideration our legislation, along with the BENES Act,
is one of many solutions that, when this bill gets marked up,
be brought to the floor and hopefully pass and help our seniors
get the coverage they deserve and think they have earned and
especially after they have done all the right things.
And I yield back.
Ms. Eshoo. The gentleman yields back.
If I might make a suggestion, it seems to me, Mr. Schrader,
that you need to get into a huddle with Dr. Ruiz. How is that?
Friendly suggestion. Sounds like an amendment to a bill to me,
but it is nice when everybody agrees.
I now would like to recognize the gentleman from Virginia,
Mr. Griffith.
Mr. Griffith. Thank you, Madam Chair. I appreciate it.
I appreciate you all being here today. I know it has been a
long day. As you know, we had a significant briefing that I
think just about every Member attended. It is the first time I
have been to one of those where there was not enough seats, but
it was important. It was good for all us to do that.
Mr. Koser, I am with you in principle. I am looking for
ways we can tighten up that language to make sure that we are
doing exactly what you want to do and not getting too carried
away. And I think we are going to be able to work that out.
Mr. Koser. Thank you, Congressman.
Mr. Griffith. And I think we get that done, we can move
forward on this.
Everybody else has had great testimony. I was here for the
testimony. So I heard that and appreciate you all being here.
And with that, because I know it is late, I yield back.
Ms. Eshoo. Well, I called him a gentleman. Now he is a
really timely one.
A pleasure to recognize the gentleman from California, Mr.
Cardenas, for his 5 minutes of questions.
Mr. Cardenas. Thank you very much, Madam Chair, and Ranking
Member as well. And I don't know how timely I am going to be,
but hopefully I can be a gentleman.
I would also like to thank my colleague on the other side
of the aisle, Congressman Carter, for working on the issue that
I would like to bring up today, and also not to mention, we
have a colleague who is not on this committee who is a champion
on this issue, and it is Congressman Bishop from Georgia.
And I would also like to give a personal thanks to Mr. and
Ms. Koser for coming and tirelessly advocating on behalf of not
only your family but thousands and thousands of children and
families across this country. And hopefully we can do some good
work as a result of that, and so thank you for bringing your
beautiful family with you.
I would like to talk about the importance of access to
reliable transportation for Medicaid beneficiaries. As you said
in your testimony, Mr. Riccardi, this benefit can be a lifeline
for Medicaid beneficiaries who may not be able to afford other
means of transportation. I think it is just common sense. If
you can't get to your doctor, it doesn't matter if you have
health insurance or not.
Mr. Riccardi, I would like to ask you a few questions about
the folks who rely on this benefit and what sort of treatments
they are using it for and what they are trying to get to with
this transportation.
First, Mr. Riccardi, just to clarify, when we talk about
nonemergency medical transportation, otherwise known as NEMT,
we are talking about rides to healthcare providers, pharmacies
and that sort of thing, not trips in and ambulance or to the
ER. And so can you clarify what kind of access these people are
getting when they utilize this transportation?
Mr. Riccardi. Yes. The NEMT benefit is a key Medicaid
benefit that helps the most vulnerable Medicaid enrollees
access medical services. This is not emergency care, say,
ambulance rides to a hospital, but for medical visits. And
these people are any combination of elderly, have a disability,
and very low income and have no other means of transportation.
And so this benefit allows people to receive both
preventive care and a number of type of services. Many of our
clients who are receiving this benefit are using it for
dialysis treatments and also for behavioral health and
substance abuse disorder treatment and medical services.
I can think of one client who, you know, is unable to leave
her home and, without this benefit, she would not be able to
receive her medical treatment. And, you know, she needs some
assistance in leaving the home, and this benefit is crucial for
her to get to her medical appointments.
And in many cases, people who are using this benefit are
women, and they are elderly and unable to, you know, drive or
transport themselves, and this is why this benefit is so
important.
Mr. Cardenas. Thank you.
And to clarify, and this is a benefit that benefits people
in rural and inner city communities pretty much equally, right?
Mr. Riccardi. Equally.
Mr. Cardenas. It doesn't discriminate.
Mr. Riccardi. Yes. So individuals in rural communities can
access this benefit. And what is unique about this
transportation benefit is our helpline is available for people
with Medicare and Medicaid to call us up with questions and
issues. And so many of the people that we speak to who are
accessing this benefit are not calling us with complaints about
NEMT. They are calling us with other Medicare-related
questions, but we hear about the chronic conditions they have
and how this transportation benefit allows them to receive the
services that they need.
And the majority of our clients are receiving dialysis.
What is great about this benefit--and I know this--States have
flexibility with this benefit--they are able to access this
service, you know, 24 hours a day, and it really is a lifeline
for them. Otherwise, if this benefit did not exist, people
would not be able to stay and live independently and in the
community.
Mr. Cardenas. And also I would venture to say--and I will
go on to my next question--that without this benefit, the cost
expense would exacerbate for the individual and for our system.
Mr. Riccardi, according to the Medicaid and CHIP Payment
and Access Commission, about 42 percent of the people who use
the NEMT benefit are dual eligibles, meaning they are eligible
for both Medicare and Medicaid. In your testimony, you said
that these dual-eligible individuals often have complex medical
needs, that 60 percent have multiple chronic conditions, and 41
percent have at least one mental health diagnosis.
Is it fair to say that these individuals likely need a
significant amount of Medicaid--excuse me--Medicare throughout
the year?
Mr. Riccardi. So, yes, on average, someone who is dually
eligible for Medicare and Medicaid can have anywhere from four
to five chronic conditions and, additionally, at least one
behavioral health issue. And increasingly more and more older
adults are suffering from anxiety and depression, and so this
benefit truly is crucial for people who are either elderly or
disabled and low income where they are unable to afford
transportation. So this really enables for them to receive
their services and then also prevent either relapses or a
worsening of a chronic condition.
Mr. Cardenas. Thank you very much. And I yield back the
balance of my time.
Ms. Eshoo. The gentleman yields back.
It is a pleasure to recognize the gentleman from Oklahoma,
Mr. Mullin, for 5 minutes of questions.
Mr. Mullin. Thank you, Madam Chair.
Dr. Cooper, the Medicare ESRD Program has saved lives but
has also impact on overall medical expenses. What are the
easiest ways to reduce expenses connected with this program?
Dr. Cooper. Thank you, Congressman. So certainly, on the
one side, which is obviously transplant, and we spent a lot of
time today talking about the value of a transplant and how it
saves lives. The other part is identifying chronic kidney
disease early and preventing people from ever needing the point
where transplant is necessary.
And so--and some of your efforts have certainly, I think,
garnished a lot of interest in the kidney community of early
identification and getting people the care they need for
problems such as high blood pressure and diabetes so that they
can receive the appropriate treatment for those and avoid
kidney disease. But, unfortunately, a lot of people without
access to primary care eventually get to the need of a
transplant. And I think that is why we are here today, is to
recognize transplant is the best treatment for end-stage organ
disease. Dialysis is in many ways, we think, a stopover.
And, unfortunately, there is a lot of misperceptions about
whether or not, number one, people can avoid dialysis
altogether. They can and receive a transplant immediately,
rather than go on dialysis. And also, who are the appropriate
candidates for transplant? We are finding more and more myths
exist about who is not a candidate for transplant, and we
should spend more time recognizing that most people who have
end-stage renal disease should be referred to a transplant
program because it is the best treatment for end-stage renal
disease.
Mr. Mullin. All right. Unfortunately, I have had my wife's
grandfather and two good friends of mine who have passed away
while they were on dialysis, awaiting a transplant, because in
Indian Country it is disproportionately high, roughly 50
percent more likely to find themselves on dialysis, needing a
transplant, than any other groups. And so it is vitally
important, and it is something that we take to heart.
I can't simply drive any direction outside of our house,
going to the big city of Tulsa, without passing a dialysis
center. There are 2 within 30 miles of each other, and we are
pretty rural for that to happen.
When you compare a transplant to dialysis, is a return on
investment a short period of time? Is it noticed?
Dr. Cooper. Yes. So there has been lots of studies that
have demonstrated that people who undergo a transplant versus
remaining on dialysis, at approximately 90 to 100 days after
they receive their transplant, that they have a decreased risk
of death versus remaining on dialysis. And so the return on the
investment, to use your term, is actually very quick following
transplant.
Now, that appreciates the fact that we do have some
absolute contraindications and relative contraindications to
being listed for transplant, albeit, like I said, those are
getting shorter and shorter. But recognize again that the data
has clearly shown that people should be transplanted who meet
the criteria for transplantation because, again, their return
on investment, not only from a length of life but from a
quality of life, both for them and for their family, as I
mentioned, it is an important consideration that end-stage
renal disease not only affects the individual but affects their
family and support system who often have to plan around three-
times-a-week dialysis and all of the rigors that are associated
with suffering through end-stage renal disease.
Mr. Mullin. All right. And this is just more of a
statement. This isn't a question, because I am supporter of
H.R. 5334, but I am concerned to see that under section 2,
individuals eligible for services in this, which is Indian
Health Services, would be barred from this coverage under
Medicare.
As I have stated before, American Indians and Alaska
Natives are 50 percent more likely to have kidney failure
compared to others. I know the bill sponsors are friends of
Indian Country, and I look forward to continuing to work with
them to ensure American Indians have the access to the medical
services they need.
And with that, I will yield back.
Ms. Eshoo. The gentleman yields back.
I don't understand the reason why that is the case, but----
Mr. Burgess. May I address that?
Ms. Eshoo. Sure.
Mr. Burgess. Well, the bill was introduced by another
Member of Congress. We did not have absolute editorial
authority before it was introduced.
Mr. Mullin. Yes.
Mr. Burgess. I think that is something that can be
remedied.
Mr. Mullin. And we understand that the sponsor is looking
into it. We have clarification, but they have made us assured
they are going to do what they can to----
Ms. Eshoo. Good. I would----
Mr. Mullin [continuing]. Amendment under the rule.
Ms. Eshoo. You obviously are already working with the
authors of the legislation. And, if anything, we want the
tremendous benefits that the legislation brings about to have,
I would say, you know, first and foremost in the Native
American community to be----
Mr. Mullin. And I understand that this is last payer
anyways, but it still has to be written in. That is the way I--
--
Ms. Eshoo. Exactly. Well, it can't be prohibited.
Mr. Mullin. Right.
Ms. Eshoo. That is where--that is kind of chilling to me,
to draw a line and say, oh, you who need this desperately are
definitely out.
Mr. Burgess. If I may offer, when this was an Energy and
Commerce product, that did not happen. We will fix it.
Ms. Eshoo. Good. OK.
Dr. Ruiz of California.
Mr. Ruiz. Thank you, Madam Chair, and thank you for
considering my bill, H.R. 2477, the Beneficiary Enrollment
Notification and Eligibility Simplification Act of 2019,
otherwise known as the BENES Act.
I would also like to thank my friend and colleague, Mr.
Bilirakis, on this committee for introducing this important
piece of legislation with me.
I grew up in the Coachella Valley, and oftentimes people
think of Palm Springs, Indian Wells, Rancho Mirage with lush
country clubs and that is a place where you go to retire and
spend a lot of money playing golf and enjoying life, and that
is definitely an option. However, the vast majority of seniors
in my district are not so well off, and they still struggle and
they still have bills, and their Social Security doesn't cut
it, and they still take care of their grandchildren, and they
still have other bills that they need to pay, and so they have
to work. And when they work, they don't get the notification of
automatic enrollment into Medicare part A, part B. Therefore,
they miss out and they are late, and that has consequences,
multiple consequences.
One is, for every year that they are late, they incur a 10
percent lifetime penalty on their premiums. So let's say they
work for 3, 4, 5 years. That is a 50 percent increase in
premiums for the rest of their lives.
Second, when they don't enroll, they just don't have
coverage. Simple as that. And some of these jobs don't offer
that kind of insurance, and they just think that they are
automatically going to get Medicare, and they don't.
And then, finally, there are some innate enrollment
coverage gaps that are unacceptable, up to 6 months at times.
And, because they don't have insurance during that time, even
after they enroll, then they have to pay those expensive bills.
They have to get private health insurance, which has higher
premiums than the Medicare. And we have seen how that can be
detrimental, especially for those who have to decide between
paying their bills, working, food, those that have to take
reverse mortgages, those that simply go into extreme financial
hardship, which adds to their sickness and ailments with
anxiety.
And so this bill wants to prevent those--not only prevent
seniors from not having insurance once they turn 65, it also
wants to prevent them from incurring the penalty for late
enrollment, per se, after 65, but even closes those loopholes
within the enrollment coverage gap that currently exist simply
because it is outdated, it is complex, and people are really
losing out.
So this bill really protects seniors, and it is aimed for
seniors by making sure they get notification, starting as early
as the age of 60, every year when they are anticipating what
they may be able to get in terms of their Social Security years
later, even if they have to work. And it also aligns the
enrollment period for part B with the other private insurance
enrollment period so it is not as confusing. So it is just what
they would normally--when they would normally enroll, they
would enroll.
So those two provisions will prevent them from making the
mistake of not enrolling in a proper fashion.
And then, finally, the third thing is that it closes that
nuanced systematic flaw, which has a loophole of an enrollment
coverage gap by ensuring that, once they enroll, even those 3
months after they turn 65, but also when they do their first
enrollment, their first late enrollment, that they don't have
to wait up to 6 months, that it can happen in the same month or
soon after.
So let me ask you some questions. In your written
testimony, you state that in 2018, approximately 760,000
Medicare beneficiaries were paying the late enrollment penalty.
And many of the seniors I know can't afford their medicines or
their Medicare premiums in the first place. They certainly
cannot shoulder the additional burden of a penalty, and this is
not to mention the potentially devastating effect of having a
potential gap in coverage, especially when you are at most risk
of getting sick. So these laws are over 50 years old, and
healthcare has changed in the last 50 years.
Have the enrollment laws been amended since they were
initially enacted, and how is the enrollment environment
different today than it was back then?
Mr. Riccardi. So the----
Ms. Eshoo. We will allow Mr. Riccardi to respond, but your
time is up.
Yes.
Mr. Riccardi. Thank you.
Ms. Eshoo. Please proceed.
Mr. Riccardi. The enrollment rules for the initial
enrollment period and the general enrollment period have not
changed in over 50 years.
And to speak to your point about the struggles that older
Americans have with finances is that approximately 50 percent
of older adults are living on $26,000 a year or less, and a
quarter of them have less than $13,000 in savings and they
simply cannot bear the burden of these late enrollment
penalties and these gaps in coverage.
Our helpline hears, you know, approximately a quarter of
our calls around these issues, and the worst call that we
receive happens to be every year during the month of April
after somebody misses the general enrollment period, because
they would not be able to enroll for another approximately 18
months for coverage.
And so what is so important about the BENES Act is it will
eliminate this punitive gap in coverage for people, as you have
mentioned, who have had other types of insurance, in many cases
have been paying more than what it costs--what it would cost to
be in the Medicare program.
And so this bill will prevent these errors from happening.
It is very commonsense and practical that they would receive a
notice from the Federal Government about the best decision for
them to make.
Mr. Ruiz. Thank you. I yield back my time.
Ms. Eshoo. Wonderful. The gentleman yields back.
And I recognize the gentleman from Georgia, Mr. Carter.
Mr. Carter. Thank you, Madam Chair.
And thank all of you for being here. We appreciate this
very much.
Madam Chair, I want to start by thanking you and thanking
Chairman Pallone for including my bill, H.R.--and
Representative Cardenas' bill--H.R. 3935, the Protecting
Patients Transportation to Care Act, in today's hearing.
H.R. 3935 is pretty simple. It just codifies what is
already in rule, and that is important, and it codifies
something that is beneficial and is helping us.
You know, I have been in the State legislature. I was in
the State legislature for 10 years. I have been in Congress now
for 5 years. One of the most difficult tasks I have had as a
healthcare professional is explaining to some of my colleagues
the value of and benefit of healthcare and well care, of making
sure we are getting patients the care that they need and how it
can actually save us money, and save us a lot of money. But all
this does is to just codify current regulations that the States
have to offer nonemergency medical transportation for medically
necessary services to patients who don't have access to
transportation on their own.
Now, I represent a lot of south Georgia, a very rural area,
and that is very important. However, it is important to note
also that this could have an impact on people in urban areas
just as well. There are certainly people who need this service
in the urban areas just as we obviously need it in the rural
areas.
Now, to tell you the truth, generally speaking, I am not in
favor of mandating things and of codifying these type of
things; however, the benefit outweighs the risk here. There is
no question about it. The benefit of this far outweighs any
risk.
And, having said that, I will say that there are a number
of my colleagues who have expressed some concern about fraud,
waste, and abuse, and I get that, and I understand that. This
bill actually addresses that as well and actually puts some
areas in place, some programs in place, to make sure that we
are checking on that. And we are going to continue to work on
that. It is extremely important.
But the lack of access to transportation can be a barrier
across the country, and as I say, patients who use the
nonemergency medical transportation benefit do it for a number
of reasons, for a variety of reasons. Dialysis would be one.
And that is a perfect example. Substance abuse, and let's talk
about that for one second. This committee, in a bipartisan
effort--as I have always said, I think this is the most
bipartisan committee in Congress, and I do believe that
sincerely--but what we have done for substance abuse and for
addressing that situation, this is an extension of that. We
need to make sure that people have access to those programs. So
that is vitally important as well.
Mental health treatment, day support for patients with
intellectual and developmental disabilities, physician
services, pharmacy services, physical therapy, the list goes on
and on. All of these are extremely important to making sure
that we have a healthy citizenship, and that is very important.
So it is no surprise--and just to give you one example--it
is no surprise that people who miss medical appointments due to
a lack of reliable transportation experience worse health
outcomes and are more likely to end up in the emergency room.
You talk to any doctor, you talk to any hospital administrator,
and they will tell you, where is the main cost? Emergency
rooms. We got to keep people out of the emergency rooms. We
have got to get them in the habit of primary care, getting them
in the habit of making sure that they are not using the
emergency room as their primary care physicians.
There is a study from Florida State University that found
that, if just 1 percent--1 percent--of nonemergency medical
transportation trips prevented an emergency room visit, the
State of Florida would receive a 1,108 percent return on
investment. Now, who wouldn't take that? So I am just trying to
show you the value of this, because I believe there is a great
value here.
So, as I said, we are going to be working on this as far as
the fraud, waste, and abuse goes. Think about the future. Now
we have got Uber. Now we have got Lyft. We have got other
things, and this requires the States to use prior authorization
or some other form of utilization management to help cut down
on bad actors, and we have bad actors in everything, including
this. We need to do that. So we have got stipulations in here
for that.
Have I missed anything?
Mr. Riccardi. No, you haven't missed anything. But what
was--what I was thinking about was an individual, say, somebody
who is frail and elderly. And as people are living longer and
diagnosed with dementia and Alzheimer's, this benefit is cost
effective and ultimately a cost saver, helping people stay in
the home, reducing hospital visits, reducing ER visits, and
allowing people to live in the community. And it is difficult
to quantify what that would mean for someone's life, but this
benefit, although it is not highly utilized, it is very
important and vital to keeping people healthy and at home. So--
--
Mr. Carter. Great. Well, thank you. And I know I am out of
time, but before I yield back, I would like to submit the
following letters for the record--these are in support of this
bill--from Generate Health, Access Living, Greater Hartford
Legal Aid, Connecticut Legal Services, New Haven Legal
Assistance Association, Together Colorado, Center for Health
Progress, American Network of Community Options & Resources,
Community Catalyst, and Georgians for a Healthy Future.
Ms. Eshoo. Thank you. Wonderful. So ordered.
[The information appears at the conclusion of the hearing.]
Mr. Carter. Thank you. And I yield back, Madam Chair.
Ms. Eshoo. So ordered.
I would just like to say this about Mr. Carter's bill. I
think it would be a godsend to people, in plain English, just a
godsend.
I would like to submit the following statements for the
record and request unanimous consent to enter them into the
record: a statement from the National Kidney Foundation in
support of H.R. 5534; a letter from the American Dental
Association in support of H.R. 1379; a letter from the American
Society of Plastic Surgeons in support of H.R. 1379; a letter
from the Healthcare Leadership Council in support of H.R. 2477
and H.R. 3935; a letter from the American Network of Community
Options and Resources in support of H.R. 3935; a letter from
the March of Dimes in support of H.R. 4801; testimony of John
Kahan, president of Aaron Matthews SIDS Research Guild of
Seattle Children's, in support of H.R. 2271; a letter from Food
Allergy Research and Education in support of H.R. 2466.
This is really an honor roll of organizations, and kudos to
all the authors and cosponsors of the seven bills that we heard
today. This is quite something.
Testimony of the American Academy of Allergy, Asthma and
Immunology in support of H.R. 2468; a letter from former CMS
Administrators--well, that is nice--in support of H.R. 5772; a
list of 95 organizational supporters of H.R. 2477; a letter
from 72 stakeholder organizations in support of H.R. 2477; a
one-page summary of H.R. 2477 developed by the Medicare Rights
Center. Thank you. An October 2018 New York Times article
entitled, ``Why You Shouldn't Wait to Sign Up for Medicare,
Part B.'' Well, I don't think very many people read it. So that
is why we are here today. A December 2019 Wall Street Journal
article entitled, ``Medicare Enrollment Can Be Confusing and
Lead to Unexpected Costs''; a joint statement of
Representatives Ryan, Underwood, and Stivers in support of H.R.
4801; a letter from Generate Health in support of H.R. 3935; a
letter from Access Living in support of 3935; a letter from the
Blue Dog Coalition in support of the NEMT benefit; a letter
from the Congressional Black Caucus in support of the NEMT
benefit; a list of 59 organizational supporters of 3935; a
study on NEMT's return on investment prepared by the Medicare
Rights Center. Thank you again. A statement from CVS Health in
support of 5534.
Without objection, so ordered.
[The information appears at the conclusion of the hearing.]
Ms. Eshoo. So to each of you at the witness table, on
behalf of all of the members of this subcommittee, I want to
thank you for your tremendous patience. You have been here
since early this morning, and even though you weren't at the
witness table, you stuck with it, and we sincerely appreciate
it.
Hearings--legislative hearings are foundational to
strengthen bills, and so the expert testimony, the testimony of
a parent describing what takes place in their day-to-day lives
and informing us of what we need to do, is always very
powerful. You operate on people. We are listening. Your family
experience strengthens our hand in terms of producing good
legislation.
And, Mr. Riccardi, thank you for your work and the work of
your organization. It really is superb, and I have confidence
that--someone said the Magnificent Seven--that we move these
bills. I have every intention of doing so, and because the
American people will be bettered by them.
So thank you to all of you. I want to thank your families
that are here, the little ones, these angels. We should have
brought them up here and had them sitting with me, but one of
them actually gave me a big hug. Isn't that something? That
looks good. I feel like crawling in there with him.
With that, we thank all of you. And the subcommittee is now
adjourned.
[Whereupon, at 3:25 p.m., the subcommittee was adjourned.]
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