[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

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                        energycommerce.house.gov
                        
                               __________

                    U.S. GOVERNMENT PUBLISHING OFFICE                    
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                    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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