[House Hearing, 114 Congress]
[From the U.S. Government Publishing Office]





 
             EXAMINING LEGISLATION TO IMPROVE PUBLIC HEALTH

=======================================================================

                                HEARING

                               BEFORE THE

                         SUBCOMMITTEE ON HEALTH

                                 OF THE

                    COMMITTEE ON ENERGY AND COMMERCE
                        HOUSE OF REPRESENTATIVES

                    ONE HUNDRED FOURTEENTH CONGRESS

                             SECOND SESSION

                               __________

                           SEPTEMBER 8, 2016

                               __________

                           Serial No. 114-165
                           
                           
                           
                           
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]                 

                           
                           


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                    COMMITTEE ON ENERGY AND COMMERCE

                          FRED UPTON, Michigan
                                 Chairman
JOE BARTON, Texas                    FRANK PALLONE, Jr., New Jersey
  Chairman Emeritus                    Ranking Member
JOHN SHIMKUS, Illinois               BOBBY L. RUSH, Illinois
JOSEPH R. PITTS, Pennsylvania        ANNA G. ESHOO, California
GREG WALDEN, Oregon                  ELIOT L. ENGEL, New York
TIM MURPHY, Pennsylvania             GENE GREEN, Texas
MICHAEL C. BURGESS, Texas            DIANA DeGETTE, Colorado
MARSHA BLACKBURN, Tennessee          LOIS CAPPS, California
  Vice Chairman                      MICHAEL F. DOYLE, Pennsylvania
STEVE SCALISE, Louisiana             JANICE D. SCHAKOWSKY, Illinois
ROBERT E. LATTA, Ohio                G.K. BUTTERFIELD, North Carolina
CATHY McMORRIS RODGERS, Washington   DORIS O. MATSUI, California
GREGG HARPER, Mississippi            KATHY CASTOR, Florida
LEONARD LANCE, New Jersey            JOHN P. SARBANES, Maryland
BRETT GUTHRIE, Kentucky              JERRY McNERNEY, California
PETE OLSON, Texas                    PETER WELCH, Vermont
DAVID B. McKINLEY, West Virginia     BEN RAY LUJAN, New Mexico
MIKE POMPEO, Kansas                  PAUL TONKO, New York
ADAM KINZINGER, Illinois             JOHN A. YARMUTH, Kentucky
H. MORGAN GRIFFITH, Virginia         YVETTE D. CLARKE, New York
GUS M. BILIRAKIS, Florida            DAVID LOEBSACK, Iowa
BILL JOHNSON, Ohio                   KURT SCHRADER, Oregon
BILLY LONG, Missouri                 JOSEPH P. KENNEDY, III, 
RENEE L. ELLMERS, North Carolina         Massachusetts
LARRY BUCSHON, Indiana               TONY CARDENAS, California
BILL FLORES, Texas
SUSAN W. BROOKS, Indiana
MARKWAYNE MULLIN, Oklahoma
RICHARD HUDSON, North Carolina
CHRIS COLLINS, New York
KEVIN CRAMER, North Dakota

                         Subcommittee on Health

                     JOSEPH R. PITTS, Pennsylvania
                                 Chairman
BRETT GUTHRIE, Kentucky              GENE GREEN, Texas
  Vice Chairman                        Ranking Member
JOHN SHIMKUS, Illinois               ELIOT L. ENGEL, New York
TIM MURPHY, Pennsylvania             LOIS CAPPS, California
MICHAEL C. BURGESS, Texas            JANICE D. SCHAKOWSKY, Illinois
MARSHA BLACKBURN, Tennessee          G.K. BUTTERFIELD, North Carolina
CATHY McMORRIS RODGERS, Washington   KATHY CASTOR, Florida
LEONARD LANCE, New Jersey            JOHN P. SARBANES, Maryland
H. MORGAN GRIFFITH, Virginia         DORIS O. MATSUI, California
GUS M. BILIRAKIS, Florida            BEN RAY LUJAN, New Mexico
BILLY LONG, Missouri                 KURT SCHRADER, Oregon
RENEE L. ELLMERS, North Carolina     JOSEPH P. KENNEDY, III, 
LARRY BUCSHON, Indiana                   Massachusetts
SUSAN W. BROOKS, Indiana             TONY CARDENAS, California
CHRIS COLLINS, New York              FRANK PALLONE, Jr., New Jersey (ex 
JOE BARTON, Texas                        officio)
FRED UPTON, Michigan (ex officio)
  
                             C O N T E N T S

                              ----------                              
                                                                   Page
Hon. Joseph R. Pitts, a Representative in Congress from the 
  Commonwealth of Pennsylvania, opening statement................     1
    Prepared statement...........................................     2
Hon. Gene Green, a Representative in Congress from the State of 
  Texas, opening statement.......................................     4
Hon. Marsha Blackburn, a Representative in Congress from the 
  State of Tennessee, opening statement..........................     5
Hon. G.K. Butterfield, a Representative in Congress from the 
  State of North Carolina, opening statement.....................     6

                               Witnesses

Jonathan Leffert, M.D., FACP, FACE, ECNU, President-Elect, 
  American Association of Clinical Endocrinologists..............     8
    Prepared statement...........................................    10
Arthur Dean, Chairman and CEO, Community Anti-Drug Coalitions of 
  America........................................................    16
    Prepared statement...........................................    18
Sonja L. Banks, President and COO, Sickle Cell Disease 
  Association of America, Inc....................................    29
    Prepared statement...........................................    31
R. Sean Morrison, M.D., Professor and Vice Chair, Brookdale 
  Department of Geriatrics and Palliative Medicine, Icahn School 
  of Medicine at Mount Sinai, and Director, National Palliative 
  Care Research Center...........................................    41
    Prepared statement...........................................    43
Brad Marino, M.D., MPP, MSCE, Chair Pediatric Congenital Heart 
  Association....................................................    60
    Prepared statement...........................................    62

                           Submitted Material

Documents for the record submitted by Mr. Pitts..................    95
Article entitled, ``Current Management of Sickle Cell Anemia,'' 
  Cold Spring Harbor Perspectives in Medicine, 2013, submitted by 
  Mr. Burgess....................................................   124
Documents for the record submitted by Mr. Bilirakis..............   141
Documents for the record submitted by Mr. Engel..................   155


             EXAMINING LEGISLATION TO IMPROVE PUBLIC HEALTH

                              ----------                              


                      THURSDAY, SEPTEMBER 8, 2016

                  House of Representatives,
                            Subcommittee on Health,
                          Committee on Energy and Commerce,
                                                    Washington, DC.
    The subcommittee met, pursuant to call, at 10:00 a.m., in 
room 2322, Rayburn House Office Building, Hon. Joseph R. Pitts 
(chairman of the subcommittee) presiding.
    Present: Representatives Pitts, Guthrie, Barton, Burgess, 
Blackburn, Lance, Bilirakis, Long, Ellmers, Bucshon, Brooks, 
Collins, Green, Engel, Schakowsky, Butterfield, Schrader, 
Kennedy, Cardenas, and Pallone (ex officio).
    Also Present: Representative Roybal-Allard.
    Staff Present: Paul Edattel, Chief Counsel, Health; 
Adrianna Simonelli, Professional Staff Member, Health; Heidi 
Stirrup, Health Policy Coordinator; Waverly Gordon, Minority 
Professional Staff Member; Tiffany Guarascio, Minority Deputy 
Staff Director and Chief Health Advisor; and Samantha Satchell, 
Minority Policy Analyst.

OPENING STATEMENT OF HON. JOSEPH R. PITTS, A REPRESENTATIVE IN 
         CONGRESS FROM THE COMMONWEALTH OF PENNSYLVANIA

    Mr. Pitts. The subcommittee will come to order. The chair 
will recognize himself for an opening statement. Today's 
hearing will examine several different legislative proposals 
that will address various aspects of the Public Health Service 
Act.
    H.R. 1192, the National Diabetes Clinical Care Commission 
Act, amends the Public Health Service Act to foster more 
effective implementation and coordination of clinical care for 
people with prediabetes and the chronic diseases and conditions 
that result from diabetes.
    Today, our witnesses will also be discussing potential 
changes to legislation that will make it less disease-specific, 
so the focus can be broader, to include related autoimmune and 
metabolic syndromes. According to the Centers for Disease 
Control and Prevention, CDC, almost 29 million Americans have 
diabetes, and an estimated 86 million American adults have 
prediabetes. Diabetes is the seventh leading cause of death in 
the United States. It is the leading cause of kidney failure. 
The total national cost associated with diabetes in 2012, 
according to the CDC, exceeded $245 billion. One in three 
Medicare dollars is currently spent upon people with diabetes. 
There are 35 Federal departments, agencies, and offices 
involved with implementation of Federal diabetes activities. 
And this legislation will establish a commission to evaluate, 
recommend solutions for better coordination of patient care and 
ways to control costs across all of these offices.
    And I thank my colleague, Representative Pete Olson, for 
sponsoring this important legislation, which will be welcome 
news for the over 100 million people afflicted with diabetes or 
prediabetes.
    H.R. 1717, the Sober Truth on Preventing Underage Drinking 
Reauthorization Act, or the STOP Act, sponsored by 
Representative Roybal-Allard of California, provides for 
programs and activities to prevent underage drinking.
    H.R. 1807, the Sickle Cell Disease Research, Surveillance, 
Prevention and Treatment Act of 2015, sponsored by 
Representative Danny Davis of Illinois and Dr. Michael Burgess 
of Texas, would reauthorize the Sickle Cell Disease 
Demonstration Program. Sickle cell disease has no cure. It 
leads to premature death. This legislation will hopefully move 
us one step closer to improving the quality of care and symptom 
management for those afflicted.
    H.R. 3119, the Palliative Care and Hospice Education 
Training Act, sponsored by Representative Engel of New York, 
increases the number of permanent faculty in palliative care at 
accredited allopathic and osteopathic medical schools, nursing 
schools, social work schools, to promote education and research 
in palliative care and hospice and to support the development 
of faculty careers in academic palliative medicine.
    H.R. 3952, the Congenital Heart Futures Reauthorization Act 
of 2015, sponsored by Representative Bilirakis of Florida, 
coordinates Federal congenital heart disease research efforts 
and improves public education and awareness of congenital heart 
disease.
    Today, we will hear from one panel of experts and 
stakeholders as to their ideas and recommendations on these 
various bills.
    We welcome all of you, and I now yield to Dr. Burgess.
    [The prepared statement of Mr. Pitts follows:]

               Prepared statement of Hon. Joseph R. Pitts

    The Subcommittee will come to order.
    The Chairman will recognize himself for an opening 
statement.
    Today's hearing will examine several different legislative 
proposals that will address various aspects of the Public 
Health Service Act.
    H.R. 1192, the ``National Diabetes Clinical Care Commission 
Act'' amends the Public Health Service Act to foster more 
effective implementation and coordination of clinical care for 
people with pre-diabetes, diabetes, and the chronic diseases 
and conditions that result from diabetes. Today, our witness 
will also be discussing potential changes to the legislation 
that will make it less disease specific so the focus can be 
broader to include related autoimmune and metabolic syndromes.
    According to the Centers for Disease Control and Prevention 
(CDC), almost 29,000,000 Americans have diabetes and an 
estimated 86,000,000 American adults have pre-diabetes. 
Diabetes is the seventh leading cause of death in the United 
States and is the leading cause of kidney failure.
    Total national costs associated with diabetes in 2012 
according to the CDC exceeded $245 billion. One in three 
Medicare dollars is currently spent on people with diabetes.
    There are 35 Federal departments, agencies, and offices 
involved with implementation of Federal diabetes activities. 
This legislation will establish a commission to evaluate and 
recommend solutions for better coordination of patient care and 
ways to control costs across all of these offices.
    I thank my colleague, Rep. Pete Olson, for sponsoring this 
important legislation which will be welcome news for the over 
100,000,000 people afflicted with diabetes or pre-diabetes.
    H.R. 1717, the Sober Truth on Preventing Underage Drinking 
Reauthorization Act or the STOP Act, sponsored by Rep. Roybal-
Allard (CA) provides for programs and activities to prevent 
underage drinking.
    H.R. 1807, the Sickle Cell Disease Research, Surveillance, 
Prevention, and Treatment Act of 2015, sponsored by Rep. Danny 
Davis (IL) and Rep. Michael Burgess (TX) reauthorizes a sickle 
cell disease demonstration program. Sickle cell disease has no 
cure and leads to premature death. This legislation will 
hopefully move us one step closer to improving the quality of 
care and symptom management for those afflicted.
    H.R. 3119, the Palliative Care and Hospice Education and 
Training Act, sponsored by Rep. Engel (NY) increases the number 
of permanent faculty in palliative care at accredited 
allopathic and osteopathic medical schools, nursing schools, 
social work schools, to promote education and research in 
palliative care and hospice, and to support the development of 
faculty careers in academic palliative medicine.
    H.R. 3952, the Congenital Heart Futures Reauthorization Act 
of 2015, sponsored by Rep. Bilirakis (FL) coordinates federal 
congenital heart disease research efforts and improves public 
education and awareness of congenital heart disease.
    Today we will hear from one panel of experts and 
stakeholders as to their ideas and recommendations on these 
various bills.
    I will now yield to Dr. Burgess.

    Mr. Burgess. Thank you, Mr. Chairman.
    And it is with a great deal of pleasure that I recognize 
from my neck of the woods, Dr. Leffert being here today. He is 
the president-elect of the American Association of Clinical 
Endocrinologists, and in another life, I used to refer patients 
to Dr. Leffert from my practice in Louisville, Texas, down to 
the big city specialist.
    So, Jonathan, it is great to see you again. It is great to 
have you here as part of this committee.
    And Ms. Banks, who is here on behalf of the Sickle Cell 
Disease Foundation, who will be talking about the disease that 
Danny Davis and I, Representative Davis and I, introduced a 
bill. We are going to be looking at legislation that seeks to 
identify and improve the overall public health of our country, 
and one of those bills is 1807, the Sickle Cell Disease 
Research, Surveillance, Prevention and Treatment Act of 2015. 
It was back in the middle 1970s when I was a resident at 
Parkland Hospital, our obstetric service there, Dr. Jack 
Pritchard, Dr. Eric Cunningham, sickle cell disease in 
pregnancy was a special project that they put a lot of effort 
into. And as a consequence, we ended up seeing a lot of 
patients referred from around the country to the program there 
at Parkland Hospital in the middle 1970s. It had been some time 
since I thought about it again, and then, with Representative 
Davis at one of your meetings here on the Hill, it really 
struck how there really hadn't been the advancements in this 
area that I thought there would have been by this time. So that 
is one of the things that this committee has been very active 
in the Cures for the 21st Century. We want those things that 
are supposed to be there by now, and I would include this as 
one of those things that we want to be there by now.
    So thank you, Mr. Chairman. I will back and await the 
discussion.
    Mr. Pitts. The chair thanks the gentlemen and now yields to 
the ranking member of the subcommittee, Mr. Green of Texas, 5 
minutes for an opening statement.

   OPENING STATEMENT OF HON. GENE GREEN, A REPRESENTATIVE IN 
                CONGRESS FROM THE STATE OF TEXAS

    Mr. Green. Thank you, Mr. Chairman.
    I want to welcome our panel today, and thank you for taking 
your time to come before us. We are examining five pieces of 
legislation that will improve public health and build on this 
committee's record of advancing and enacting very bipartisan 
bills. I want to thank the chairman for calling the hearing and 
our witnesses for being here with us this morning.
    H.R. 1192, the National Diabetes Clinical Care Commission 
Act, was introduced and championed by my colleague on our 
committee but also my neighbor in Houston, Pete Olson, 
Congressman Olson, and Dave Loebsack, who is also a member of 
our committee. We would be considering a manager's amendment on 
H.R. 1192, which would establish a national clinical care 
commission to evaluate and offer recommendations to improve 
care, leverage resources, and coordinate efforts around complex 
metabolic, autoimmune, and insulin-related diseases. Through 
innovation and collaboration and maximizing return on 
investment, this important legislation provides the opportunity 
to address the enormous economic and human impact caused by 
diabetes and other disorders, and I am proud to be a cosponsor 
of this legislation.
    H.R. 1717, the Sober Truth on Preventing Underage Drinking 
and Reauthorization Act, or the STOP Act, was introduced by 
Representative Lucille Roybal-Allard. She has been a tireless 
champion for this issue. In fact, she has talked to me--I think 
we came to Congress in 1993--and she has talked to me all of 
the time since then about trying to deal with drunk driving. I 
want to recognize her, as she is here, and thank her for her 
leadership.
    The STOP Act will build on successful efforts to reduce 
underage drinking by reauthorizing a number of important public 
health programs and add an additional component of screening 
and intervention.
    H.R. 1807, the Sickle Cell Disease Research, Surveillance, 
Prevention and Treatment Act, will enhance our ability to 
understand and survey and treat sickle cell disease. Sickle 
cell disease is a group of inherited red blood disorders that 
affect approximately 100,000 Americans. Unfortunately, it is 
difficult to diagnose, as symptoms can be severe, and the 
treatment requires comprehensive and complex care.
    H.R. 1807, introduced by Representative Danny Davis and 
Mike Burgess, also on our committee, will promote research and 
prevention and treatment and emphasizes collaboration of 
community-based entities focusing on sickle cell disease.
    H.R. 3119, Palliative Care and Hospice Education and 
Training Act, is an important bill to improve palliative care. 
Representative Eliot Engel, also a member of our committee, 
introduced this legislation, recognizing that palliative care 
enhances the quality of life for individuals with serious and 
life-threatening disease by treating the symptoms, the side 
effects, and emotional pain experienced by patients. H.R. 3119 
would improve training for health professionals, enhance 
research in palliative and hospice care, and support projects 
to fund the training of physicians and nonphysician healthcare 
professionals entering the field of palliative care.
    Finally, we are considering H.R. 3952, the Congenital Heart 
Futures Reauthorization Act. Each year, approximately 4,000 
babies are born with congenital heart defects, making it the 
most common type of birth defect in the United States. It is 
estimated that 1 million children and 1.4 million adults live 
with congenital heart disorders. They require specialized care 
and face a lifelong risk of disability and premature death. The 
cause is unknown, but several genetic and environmental factors 
have been linked in the diseases. H.R. 3952, introduced by 
Representative Gus Bilirakis, also from our committee, and Adam 
Schiff and Eleanor Holmes Norton, builds on existing efforts by 
requiring the Centers for Disease Control and Prevention to 
enhance and expand its research, surveillance, and education 
outreach to providers and the public about congenital heart 
diseases. Under this legislation, the CDC would report to 
Congress on a cohort study to improve the knowledge of 
epidemiology of the disease across lifespans and implement an 
awareness campaign. I am proud to support each of these 
important bills and thank our sponsors and our committee for 
their commitment to improving public health and look forward to 
hearing from our witnesses and learning more about each of 
these bipartisan pieces of legislation.
    Mr. Chairman, unless someone else wants my last 30 or 40 
seconds, I will yield back.
    Mr. Pitts. The chair thanks the gentleman.
    I now recognize the vice chair of the full committee, the 
gentlelady from Tennessee, Ms. Marcia Blackburn, for 5 minutes 
for opening statement.

OPENING STATEMENT OF HON. MARSHA BLACKBURN, A REPRESENTATIVE IN 
              CONGRESS FROM THE STATE OF TENNESSEE

    Mrs. Blackburn. Thank you, Mr. Chairman.
    I want to thank our witnesses for being here.
    And I am so pleased that we are taking some time to go 
through these bills. They all have a significance to public 
health. The diabetes bill, I had the opportunity before coming 
to Congress to serve on the Diabetes Association Board in my 
state, and I appreciate Representative Olson's good work on 
looking at this issue.
    Of course, the underage drinking bill, when I was in the 
state senate, this is something at the state level where we put 
a tremendous amount of effort and energy, and Tennessee, my 
home State, continues to do so. I know that Reps. Davis and 
Burgess have worked hard on the sickle cell disease. It does 
need more attention. It needs more research. It needs more 
focus, so we are pleased to see that.
    We all have heard about palliative care, the importance of 
that, as we have been at home and in our districts and talked 
to families and to healthcare providers and beginning to think 
this through and look for new models. And certainly, in 
Nashville, we have a tremendous amount of research and new 
focus that has come to bear on the delivery of palliative care. 
So I am pleased that we are moving forward there. You know, I 
have to say that H.R. 3952, going back to my days as being on 
the Board of Friends of Children's Hospital in Nashville and 
dealing with congenital heart disease, and as a mom and a 
grandmom now, having friends and knowing of families, 
individuals from church, that have a baby that is born with 
CHD, and just seeing firsthand, living through the anguish and 
the desperate reach for resources that can help with this, that 
can extend the life of that child. I am so pleased that we are 
moving this forward. I do hope that we will see NIH and other 
research entities focus on how we deal with this so that these 
precious children will live long past that 18th birthday and 
will be able to move toward enjoying a full and productive 
life.
    Mr. Chairman, I will yield my time to whomever would like 
it.
    Mr. Pitts. Anyone on the majority seeking time?
    If not, the gentlelady yields back.
    The chair now recognizes Judge Butterfield, North Carolina, 
5 minutes for opening statement in place of Mr. Pallone.

OPENING STATEMENT OF HON. G.K. BUTTERFIELD, A REPRESENTATIVE IN 
           CONGRESS FROM THE STATE OF NORTH CAROLINA

    Mr. Butterfield. Thank you. I too want to thank you, 
Chairman Pitts, for holding this important hearing on 
reauthorizing important programs to combat the sickle cell 
disease and on improving diabetes awareness and care. Let me 
join my colleagues in thanking the five witnesses for coming 
forward today to testify and to give us the benefit of your 
expertise. I know you just didn't wake up this morning and come 
to this room. You have been preparing for this day, and we 
thank you for your work.
    Sickle cell disease and diabetes disproportionately affect 
African American citizens, including many in my congressional 
district in North Carolina. In fact, more than 30 years ago, I 
lost a first cousin to the disease. The two diseases, if not 
properly managed, can land people in the hospital multiple 
times. In fact, a 2010 study published in the journal of the 
American Medical Association shows that people with SCD are 
hospitalized nearly three times per year. Many people who have 
SCD are unaware of it before tests can confirm the illness. 
Even those who know they have SCD find themselves back in the 
hospital with problems with pain or other morbidities. SCD is a 
serious disease which can dramatically reduce life expectancy. 
A study in the New England Journal of Medicine found that the 
median age for men with SCD is only 42 years old. For women, it 
is 48 years. The disease is caused by a small genetic 
abnormality that deforms blood cells and causes them to block 
blood flow. SCD can lead to the development of other 
conditions, ranging from heart disease and stroke to kidney or 
liver problems.
    It is estimated, Mr. Chairman, that 100,000 Americans have 
SCD. Many more have sickle cell trait, although they never 
experience symptoms, may not even know that they have the 
trait. Children can inherent SCD if both of their parents have 
SCD or sickle cell trait and certain genes are passed on to 
them. Many of those who have SCD are African Americans. More 
than 1 out of every 400 African Americans have SCD. That is 1 
out of 400, and 1 of every 13 has the sickle cell trait.
    And so I applaud my friend and colleague Congressman Danny 
Davis and other colleagues that have done likewise--from 
Chicago--for his longtime advocacy for SCD health programs and 
his reintroduction of H.R. 1807, the Sickle Cell Disease 
Research, Surveillance, Prevention and Treatment Act of 2015. 
This legislation is a priority for many members of the 
Congressional Black Caucus, and I am proud to support it. And 
this important bill would reauthorize the sickle cell disease 
Treatment Demonstration Program, improve research and 
surveillance of the disease, and support a grant program for 
states to develop and implement prevention and treatment 
strategies.
    This bill, Mr. Chairman, is a clean reauthorization and 
would not increase government spending. It is a meaningful 
first step to help prevent and treat SCD, and I urge my 
colleagues to support this important bill. We can, we must do 
more to support those with this disease. SCD does not currently 
have a cure. No treatments have been approved since 1998. For 
that reason, I have long advocated to include SCD in the 
Pediatric Priority Review Voucher Program, the PRV, run by the 
Food and Drug Administration. I am encouraged that there is 
currently a viable treatment in clinical trials at the FDA, but 
we must do all we can to spur innovation in rare pediatric 
disease spaces. More than 100,000 Americans are counting on us 
to support sickle cell disease prevention and treatment 
programs and need our help to find a cure. I urge my colleagues 
to support 1807, and I yield back. Thank you.
    Mr. Pitts. The chair thanks the gentleman.
    That concludes the opening statements. As usual, the 
written opening statements of all members will be made a part 
of the record.
    And we welcome, as was noted previously, Congresswoman 
Roybal-Allard to sit with the committee today.
    Without objection, so ordered.
    And I ask unanimous consent to submit the following for the 
record: a letter from 43 organizations representing physicians, 
allied health professionals, patients, community health 
organizers, and industry; as well as statements from the 
Academy of Nutrition and Dietetics, Novo Nordisk, and Diabetes 
Advocacy Alliance, all regarding H.R. 1192; and both a 
statement from the American Society of Hematology regarding 
H.R. 1807 along with their State of Sickle Cell Disease 2016 
Report.
    Without objection, so ordered.
    [The information appears at the conclusion of the hearing.]
    Mr. Pitts. I will now introduce the panelists in the order 
of which they will speak, and as usual, your written statements 
will be made a part of the record, and you will each be 
recognized for 5 minutes for a summary.
    So, first, Dr. Jonathan Leffert, Acting Director and 
President-elect of the American Association of Clinical 
Endocrinologists; secondly, General Arthur Dean, Chairman and 
CEO, Community Anti-Drug Coalitions of America; and Sonja L. 
Banks, President and COO of Sickle Cell Disease Association of 
America, Inc.; then Dr. Sean Morrison, Professor and Vice 
Chair, Brookdale Department of Geriatrics and Palliative 
Medicine, Icahn School of Medicine at Mount Sinai, and Director 
of the National Palliative Care Research Center; and, finally, 
Dr. Brad Marino, Chair, Pediatric Congenital Heart Association.
    Thank you for coming today.
    And, Dr. Leffert, you are recognized 5 minutes for your 
summary at this time.

    STATEMENTS OF JONATHAN LEFFERT, M.D., FACP, FACE, ECNU, 
       PRESIDENT-ELECT, AMERICAN ASSOCIATION OF CLINICAL 
  ENDOCRINOLOGISTS; ARTHUR DEAN, CHAIRMAN AND CEO, COMMUNITY 
ANTI-DRUG COALITIONS OF AMERICA; SONJA L. BANKS, PRESIDENT AND 
COO, SICKLE CELL DISEASE ASSOCIATION OF AMERICA, INC.; R. SEAN 
MORRISON, M.D., PROFESSOR AND VICE CHAIR, BROOKDALE DEPARTMENT 
OF GERIATRICS AND PALLIATIVE MEDICINE, ICAHN SCHOOL OF MEDICINE 
AT MOUNT SINAI, AND DIRECTOR, NATIONAL PALLIATIVE CARE RESEARCH 
   CENTER; AND BRAD MARINO, M.D., MPP, MSCE, CHAIR PEDIATRIC 
                  CONGENITAL HEART ASSOCIATION

                 STATEMENT OF JONATHAN LEFFERT

    Dr. Leffert. Thank you, Mr. Chairman, and, Dr. Burgess, for 
your kind words. My name is Jonathan Leffert, and I am a 
clinical endocrinologist from Dallas, Texas, and the current 
president-elect of the American Association of Clinical 
Endocrinologists. On behalf of our 7,000 members, I would like 
to thank you for this opportunity to testify about H.R. 1192, 
the National Diabetes Clinical Care Commission Act. The 
subcommittee should be commended for addressing diabetes and 
recommending to expand the scope of H.R. 1192 to include other 
metabolic and autoimmune diseases and diseases resulting from 
insulin deficiency and insulin resistance. We appreciate the 
opportunity to work with the bill's sponsors, Representative 
Pete Olson and Representative Dave Loebsack, in this 
subcommittee on consensus language to amend H.R. 1192.
    I will focus my comments today on diabetes, which 
represents a significant part of my medical practice as a 
clinical endocrinologist and is the most prevalent of the 
diseases that will be addressed by an amended H.R. 1192.
    According to the Centers for Disease Control and 
Prevention, the number of Americans diagnosed with diabetes 
over the course of the last 35 years has increased more than 
fivefold, from 5.5 million Americans in 1980 to 29.1 million in 
2014. The CDC estimates that there are 86 million Americans 
with prediabetes, a condition known to progress to diabetes 
without appropriate intervention. Diabetes is also the catalyst 
for many other diseases. Diabetes is the leading cause of new 
cases of blindness among adults. Diabetes is the leading cause 
of kidney failure. Diabetes causes increased death rates from 
cardiovascular disease and higher rates of hospitalization from 
heart attack and stroke. Diabetes is the seventh leading cause 
of death in the United States. The total cost of diabetes to 
the Nation in 2012 exceeded $322 billion. Sixty-two percent of 
this cost is borne by the U.S. Government through programs like 
Medicare and Medicaid. By 2025, the total cost of diabetes is 
projected to reach $514 billion, a level comparable to the 
entire Medicare budget. Our Nation cannot afford for the 
current diabetes prevalence and cost trends to continue. 
Congress should not let another session go by without 
addressing this critical health crisis.
    H.R. 1192 provides a cost-effective approach to begin to 
address diabetes and the many other diseases and diagnoses 
encompassed by this legislation. The commission established in 
H.R. 1192 will provide a venue where the expertise of 
specialists, primary care physicians, allied healthcare 
professionals, and patient advocates will help our Federal 
Government partner to evaluate current programs so they are 
meeting the goal of improving the quality of patient care.
    The commission will also facilitate improved coordination 
and communication among Federal agencies. Consider the example 
of the FDA approved continuous glucose monitors, referred to as 
CGMs. These devices are indispensable to patients with type 1 
diabetes by allowing them to constantly monitor blood glucose 
levels. Patients with this device no longer fear losing 
consciousness from low blood sugar or enduring complications 
from constantly high blood sugar levels. Nearly all private 
insurance plans cover CGMs. However, once a patient turns 65 
and enrolls in the Medicare program, coverage for this 
lifesaving device is no longer available. Remedies to fix these 
issues often require an act of Congress, which places Congress 
in a position to do the job of the regulatory agencies that 
failed to work together.
    Having the commission available to work through issues such 
as this will help all parties to find and implement meaningful 
solutions. The expertise on the commission would also be 
utilized to prioritize the clinician training and deployment of 
new revolutionary technologies, such as the artificial 
pancreas, to ensure patient access to these medical innovations 
is not comprised.
    Agencies can and must work together in a coordinated 
national response driven by research experts, specialists, 
healthcare professionals, and people living with diabetes. The 
commission established under H.R. 1192 will help achieve this 
important objective.
    On behalf of the American Association of Clinical 
Endocrinologists, I would like to thank the members of the 
committee for the opportunity to testify today on H.R. 1192, 
and I urge you to act now and move this bill forward, ensuring 
its passage by the U.S. House of Representatives as soon as 
possible.
    In addition to the 220 Members of Congress who have 
cosponsored H.R. 1192, including many who are members of this 
committee, I would like to thank the 45 organizations 
representing the patients, physicians, allied health 
professionals, community organizations, and industry, and the 
Diabetes Advocacy Alliance, who have helped to advance this 
legislation.
    [The prepared statement of Dr. Leffert follows:]
    
    
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    Mr. Pitts. The chair thanks the gentleman for his summary 
and now recognizes General Dean 5 minutes for his summary.

                    STATEMENT OF ARTHUR DEAN

    Mr. Dean. Chairman Pitts, Ranking Member Green, and 
esteemed members of the subcommittee on Health, it is my 
pleasure to testify in support of H.R. 1717, the Sober Truth on 
Preventing Underage Drinking Act, so-called the STOP Act.
    I would also like to thank the bill's sponsor, 
Congresswoman Lucille Roybal-Allard, for her steadfast 
leadership on this issue, and I thank you for the support and 
leadership you provided to us.
    I am General Arthur Dean, currently serving as the Chairman 
and CEO of Community Anti-Drug Coalitions of America, a 
membership based, not-for-profit organization, commonly called 
CADCA. CADCA is a national nonprofit organization, and our 
mission is to build and strengthen the capacity of local 
citizens, and we put them into what we call community 
coalitions designed for them to have the capacity and the 
skills to build safe, healthy, and drug-free communities in the 
U.S. and around the world. We work with more than 5,000 
communities in the U.S., and it is our role to be here. And 
they are very, very concerned about the prevention and the 
reduction and combatting underage drinking. Back in 2003, the 
National Research Council and the Institute of Medicine 
published a report titled ``Reducing Underage Drinking: A 
Collective Response.'' This report cited serious underage 
drinking and recommended critical components for a national 
strategy to reduce alcohol consumption by minors. The original 
STOP Act builds upon these recommendations, and in 2016, the 
bill passed the House of Congress with a unanimous bipartisan 
support. Authorization for the law expired in 2010, as you 
know, which makes it urgent that Congress pass a 
reauthorization as soon as possible.
    H.R. 1717, the STOP Act reauthorization bill, would 
maintain and enhance the original provisions of the STOP Act, 
and quickly I would describe some of those things that we are 
concerned about. It reauthorizes the highly successful 
community-based coalition enhancement grants. We take trained 
coalitions and give them a small grant to work this issue. 
Provides grants for current and former drug-free community 
grantees and partners and allows them to partner with higher 
education to prevent underage drinking on college campuses. It 
reauthorizes the Interagency Coordinating Committee to Prevent 
Underage Drinking--we call that ICCPUD--which coordinates the 
efforts of 16 Federal agencies to combat this problem. It 
reauthorizes a highly visible national adult-oriented media 
campaign to raise the awareness of this issue and provide 
education. It reauthorizes epidemiology studies on excessive 
drinking and analyzes how young people drink and how they 
obtain alcohol in the relationship associated with that.
    And, lastly, 1717 creates a new grant program for pediatric 
healthcare providers. We think it is important that those that 
are treating our youth understand and focus on best practices 
around screening, brief intervention, and referral as 
appropriate.
    In the 10 years that have passed since STOP Act was 
created, it is clear that law's coordinated provisions have 
effectively been reducing underage drinking. As we look at the 
most recent Monitoring the Future study, it shows that lifetime 
alcohol use by those in the 8th grade, 10th grade, and 12th 
grade is currently at the lowest level since each of these 
grades were included in the study. While this is welcome news--
it is important news--underage drinking continues to be a very 
serious problem that is faced in this country: 17.2 percent, or 
nearly one in six, high school seniors still binge drink, which 
is unfortunate. Between 2006 and 2010, approximately 4,300 
young people under the age of 21 died from excessive drinking, 
which is critical. And the total annual economic costs of 
underage drinking are estimated at $24.6 billion.
    So H.R. 1717 builds upon the effective data-driven, Drug-
Free Communities Program as the most cost-effective way to 
prevent and reduce underage drinking. The community-based 
coalition enhancement grants included in the STOP Act are just 
one vital component of a comprehensive approach to improve 
public health and address underage drinking.
    I respectfully urge the committee to support swift passage 
of H.R. 1717, the Sober Truth on Preventing Underage Drinking 
Act. I will be submitting a detailed statement for the record, 
which includes information for your consideration.
    And we ask that, as in the past, this bill be unanimously 
supported and passed quickly so that it can become law during 
this session of Congress. I thank you so very much for your 
attention to this issue, and we understand that underage 
drinking, although data says we have made progress, there is 
much progress that still needs to be made, and many, many young 
people will be better served if this passes, takes place 
quickly. Thank you very much.
    [The prepared statement of Mr. Dean follows:]
    
    
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    Mr. Pitts. The chair thanks the gentleman.
    I now recognize Ms. Banks 5 minutes for your summary.

                  STATEMENT OF SONJA L. BANKS

    Ms. Banks. Good morning, Chairman Pitts and Ranking Member 
Green----
    Mr. Pitts. Could you turn on the microphone now? The light 
should be on.
    Ms. Banks. Good morning. Chairman Pitts, Ranking Member 
Green, this distinguished committee, thank you for holding this 
hearing and allowing me the opportunity to testify in support 
of H.R. 1807, the Sickle Cell Disease Research, Surveillance, 
Prevention and Treatment Act. I also would like to thank Dr. 
Burgess, the lead Republican cosponsor of this legislation, and 
Representative Butterfield, for their leadership on this 
important legislation. We would also be remiss if we did not 
recognize Representative Danny Davis for not only leading this 
important legislation but remaining one of the sickle cell 
community's key champions.
    I am here representing the Sickle Cell Disease Association 
of America, the Nation's only organization working full-time on 
a national level to resolve issues surrounding sickle cell 
disease and sickle cell trait. Since 1971, SCDA has been on the 
forefront for improving the quality of life, health, and 
services for individuals and families impacted by sickle cell 
disease, promoting policies and research and fighting for a 
universal cure.
    Now allow me to take you on a journey. I want you to think 
about the worst pain that you have ever experienced in your 
life, a broken bone, a stomach virus, a flu, or maybe for you 
women in here who have children, labor pains. Now I want you to 
take that pain, and I want you to magnify it by two. Now 
magnify it by five. Now magnify it by 10. Now imagine the pain 
hitting you at any time, anywhere, with no control, no 
treatment, and no way to manage it. Now imagine it rearing its 
ugly head monthly, weekly, and even daily. Though not the 
journey we all long for, it is one that is a reality. These 
unpredictable pain episodes are the hallmark of sickle cell 
disease and the reality for those who are afflicted with it. 
They can start as early as 6 months of age and span throughout 
the lifetime, impacting school, work, and ordinary daily 
living.
    Sickle cell disease is an inherited blood disorder 
affecting approximately 100,000 Americans. This disease causes 
the destruction and deformation of red blood cells, producing 
extreme complications that could include stroke in children and 
adults, lung problems, chronic damage to organs, including 
kidneys, liver and spleen, and, yes, severe painful episodes, 
and even death. One in every 400 African American newborns have 
sickle cell disease, as does 1 in every 1,200 newborns in 
Hispanic descent.
    Despite its first noted discovery well over 100 years ago, 
progress has been relatively slow, and the sickle cell 
community still faces numerous challenges. For instance, the 
average life expectancy of a person with sickle cell disease is 
relative young, age 40 to 45. Presently, there is only one 
medication that has been FDA approved to treat this disease. 
There is an overwhelming shortage of physicians that treat or 
specialize in sickle cell disease, which makes it very 
difficult for patients to have a primary care physician or 
medical home. A vast majority of our patients make the 
emergency room their medical home. There is no comprehensive 
model here to help reduce the major healthcare complexities 
that SCD patients encounter.
    It is because of these challenges and more that H.R. 1807 
is so crucial for the sickle cell community. Reauthorization is 
needed to assure program stability, establish more effective 
care coordination, set in motion a model of care, and allow for 
a broader reach into areas of the country where people with 
sickle cell disease are not adequately served. This legislation 
will allow states to receive Federal funding for patient 
counseling, education initiatives, and community outreach 
programs, set the groundwork for 25 sickle cell treatment 
centers across the country to treat our patients, support the 
continuance of a national coordinating and evaluation center, 
allow the Centers for Disease Control to establish and continue 
its surveillance program.
    Through this initiative, we are hopeful that data collected 
would help us to understand and improve current estimates about 
the incidence and prevalence of sickle cell disease. 
Distinguished leaders, I humbly stand--and I know I am 
sitting--before you as an advocate. No, I do not have sickle 
cell disease. I am not personally affected by it. I do not have 
anyone in my family with it, but I am an advocate. I, like you, 
believe that every American deserves equitable quality of life. 
Individuals with sickle cell disease deserve better treatment. 
They deserve better access to care, and more importantly, they 
deserve a better quality of life. So will you stand with me and 
support this legislation? It can and it will change many lives 
for the better. Thank you.
    [The prepared statement of Ms. Banks follows:]
    
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    Mr. Pitts. The chair thanks the gentlelady and now 
recognizes Dr. Morrison 5 minutes for your summary.

              STATEMENT OF R. SEAN MORRISON, M.D.

    Dr. Morrison. Chairman Pitts, Ranking Member Green, and 
members of the Energy and Commerce Health subcommittee, good 
morning, and thank you for the opportunity to address H.R. 
3119, the Palliative Care and Hospice Education and Training 
Act. My name is Sean Morrison, and I am professor and vice 
chair of geriatrics and palliative medicine and director of 
Palliative Care at the Mount Sinai Health System New York City. 
I am a former president of the American Academy of Hospice and 
Palliative Medicine, and I am here today representing the 
Patient Quality of Life Coalition, a group of over 40 patient, 
provider, and health systems focused on improving the quality 
of life for persons living with serious illness and their 
families. I would also like to thank Representative Engel, a 
fellow New Yorker, for his continued leadership, and the 33 
other bipartisan members of this committee who have signed this 
bill.
    As a practicing physician, health services researcher, and 
teacher, I am acutely aware of the challenges faced by the 
seriously ill in this country. Multiple studies have 
demonstrated that inadequately treated systems, fragmented care 
systems, poor communication between patients, families and 
their physicians, strains on caregivers, and escalating 
healthcare use all characterize the experience of living with a 
serious illness in this country. Five percent of seriously ill 
Medicare beneficiaries account for over 50 percent of spending, 
and contrary to the popular perception, only 11 percent of 
these persons are in the last year of life. The majority live 
for many years with progressively debilitating illness that 
interferes with their quality of life and ability to work and 
live independently.
    Palliative care is team-based care: doctors, nurses, social 
workers, and chaplains, focused on relief of pain and other 
symptoms and support for the best quality of life for patients 
and families in the setting of a serious illness. It should be 
provided at any age at the time of diagnosis of a serious 
illness and concurrently with all other appropriate medical 
treatment, including those directed at cure and life 
prolongation. Palliative care has been shown to enhance quality 
of life, doctor-patient family communication, satisfaction with 
care, reduce healthcare costs, and in cancer, improve survival. 
Over 95 percent of mid- to large-size hospitals now have 
palliative care teams, and palliative care is being rapidly 
integrated into the nonhospital settings.
    Yet three major challenges remain if palliative care is to 
become universally accessible and, indeed, inserted into the 
genome of American medicine. First, based on a recent national 
survey, over three-quarters of patients and families who could 
benefit from palliative care don't know what it is and thus 
cannot request it when it would be most beneficial. Yet when 
read a definition of palliative care, more than 90 percent said 
they would want it for themselves or their family members and 
that it should be universally available throughout the country. 
Targeted educational efforts to increase patient, family, and 
provider awareness about palliative care and its benefits are 
appropriately recommended in H.R. 3119.
    Workforce shortages prevent patients from accessing 
palliative care. There are simply too few palliative care 
specialists to meet the needs of the population. The 134 
existing palliative medicine fellowship programs graduate fewer 
than 300 new doctors a year, less than a 10th of what is 
needed. Because palliative care was recognized as a 
subspecialty, after the Balanced Budget Act of 1997 limited the 
number of Medicare-supported residency spots, training in 
palliative medicine is now supported only by private sector 
philanthropy and variable and inconsistent institutional 
support.
    H.R. 3119 would support specialist training in palliative 
care, palliative care education for students and trainees, and 
mid-career training in the core palliative care knowledge and 
skills for nonpalliative-care practicing healthcare 
professionals.
    Finally, the knowledge base to support palliative care is 
inadequate. Treatment for symptoms, such as breathlessness, 
fatigue, itching, and pain, are primitive compared to the 
science underlying most disease treatments. Despite four 
reports from the Institute of Medicine calling for major 
Federal investment in palliative care research, a recent study 
found that less than 1/100th of a percent of the NIH budget is 
focused on improving quality of life in the setting of serious 
illness.
    I struggle daily with the fact that opioids with all of 
their attendant risks remain the most effective treatment for 
my patients in severe pain. H.R. 3119 would require the 
Director of the National Institutes of Health to expand and 
intensify research specific to palliative care.
    To close, H.R. 3119, the Palliative Care and Hospice 
Education and Training Act will help address the barriers 
preventing all Americans from enjoying the highest quality of 
life in the setting of serious illness. I would like to again 
express my sincere thanks for the opportunity to address this 
important issue and legislation on behalf of the Patient 
Quality of Life Coalition with you this morning. Thank you 
again.
    [The prepared statement of Dr. Morrison follows:]
    
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    Mr. Pitts. The chair thanks the gentleman and now 
recognizes Dr. Marino 5 minutes for your summary.

           STATEMENT OF BRAD MARINO, M.D., MPP, MSCE

    Dr. Marino. Good morning. My name is Brad Marino. I am a 
pediatric cardiologist at Ann & Robert H. Lurie Children's 
Hospital of Chicago. I am a professor of pediatrics at 
Northwestern University Feinberg School of Medicine. I am the 
chair of the Medical Advisory Board for the Pediatric 
Congenital Heart Association, and I currently chair the Council 
for Cardiovascular Disease in the Young for the American Heart 
Association.
    Thank you very much for the opportunity to offer testimony 
today in support of H.R. 3952, the Congenital Heart Futures 
Reauthorization Act of 2015. I wish to thank Chairman Pitts and 
Ranking Member Green for holding this hearing and 
Representative Bilirakis and Representative Schiff and the 
dozens of congressional cosponsors for the bipartisan effort to 
build upon existing programs which promote lifelong research, 
track epidemiology, and raise awareness for congenital heart 
disease, or CHD, the most common birth defect.
    On behalf of Lurie Children's, the Pediatric Congenital 
Heart Association, the American Heart Association, the 
Children's Heart Foundation, and the Adult Congenital Heart 
Association, and the millions of individuals with CHD, I want 
to offer my strongest support for this very important 
legislation. Lurie Children's, the sixth ranked children's 
hospital nationally by U.S. News and World Report, is the 
largest provider of pediatric specialty care in Illinois, as 
well as serving children from all 50 States and 46 countries, 
many of whom have congenital heart disease.
    As a practicing pediatric cardiac intensivist, 
epidemiologist, and outcomes researcher, for more than 20 
years, I have borne witness to the catastrophic results of CHD 
on affected children and their families that last a lifetime. 
Critical information about the epidemiology of CHD, the 
effectiveness of treatments, and lifelong outcomes is seriously 
lacking at best and nonexistent in specific areas such as 
secondary sequelae of CHD.
    Over the last several decades, tremendous advances in care 
have dramatically reduced mortality rates for children with the 
most complex congenital heart disease and increased life 
expectancy of adults with CHD. In the absence of U.S. data, 
extrapolation of Canadian data suggests that there are 
currently more than 2.4 million individuals living in the 
United States with CHD, half of whom are adults. However, while 
survival has improved, the reality is that complex CHD and its 
treatments may result in significant cardiovascular 
complications and organ-specific comorbidities, including 
kidney and liver disease and brain injuries, that significantly 
impact health status, physical, and psychosocial functioning, 
and quality of life.
    Early intervention for CHD is not a cure, underscoring the 
need for those with CHD to have lifelong care by expert 
providers. We need to better understand and improve the 
transition from pediatric to specialized adult cardiovascular 
care. Estimates suggest that less than 25 percent, one out of 
four, adults with complex congenital heart disease are 
receiving appropriate subspecialty care. People born with CHD 
require lifelong, costly specialized cardiac care. As a result, 
healthcare utilization among the CHD population is 
disproportionately higher than the general population.
    It is estimated that compared to the medical costs of care 
for the general population, the medical costs for individuals 
with CHD are 10 to 20 times greater. Around half of all dollars 
spent on pediatric CHD-related inpatient admissions is paid by 
Medicaid.
    To improve care and reduce costs, it is essential that 
Congress enacts legislation supporting increased understanding 
of CHD across the lifespan. The Congenital Heart Futures 
Reauthorization Act of 2015 calls for the robust public health 
research and surveillance that will help us better understand 
and improve long-term outcomes for the more than 40,000 babies 
born each year with CHD.
    Since the enactment of the Congenital Heart Futures Act of 
2010, Congress has appropriated nearly $15 million to support 
CHD activities at the CDC, which has led to the standardization 
of research methods and an increased understanding of the 
public health burden that CHD poses. Continued Federal 
investment is desperately needed to better understand CHD 
across the lifespan, improve outcomes, and reduce costs. The 
Congenital Heart Futures Reauthorization Act of 2015 does just 
that. This legislation assesses the current state of biomedical 
research for CHD across the lifespan by directing the NIH to 
provide a status report on its current research on CHD. This 
will improve an understanding of the causes of CHD and drive 
innovation and effective treatments for CHD and related disease 
processes. H.R. 3952 expands public health research on CHD by 
directing the CDC to plan, develop, and implement a 
representative cohort study. The data from this cohort will 
help to describe basic U.S. demographics of CHD, assess 
healthcare utilization, and develop evidence-based practices 
and guidelines for CHD care, eliminating our reliance on 
statistics from Canada to describe the burden of CHD in the 
United States.
    This bill also directs the CDC to establish and implement 
an outreach, education, and awareness campaign, and ensuring 
that those with CHD receive appropriate care across their 
lifespan. With this critical education campaign, individuals 
with CHD and their families will better understand their 
lifelong healthcare needs and the necessity of receiving 
appropriate lifelong specialized cardiac care.
    Congenital heart disease is common. It is costly, and it is 
a critical public health issue. In enclosing, on behalf of the 
Ann & Robert H. Lurie Children's Hospital of Chicago, the 
Pediatric Congenital Heart Association, the American Heart 
Association, the Children's Heart Foundation, and the Adult 
Congenital Heart Association, I urge you to take swift action 
to enact H.R. 3952, the Congenital Heart Futures 
Reauthorization Act of 2015. It is essential that Congress pass 
this legislation to provide improved care, outcomes, and 
quality of life for the millions of individuals in the United 
States with CHD.
    Thank you for your time and consideration.
    [The prepared statement of Dr. Marino follows:]
    
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       Mr. Pitts. The chair thanks the gentleman.
    And I will begin the questioning and recognize myself for 5 
minutes for that purpose.
    Dr. Leffert, we will just go down the line. Thank you for 
highlighting the impact that metabolic diseases, such as 
diabetes, have on our healthcare system. Can you talk 
specifically about some of the issues or problems with the way 
the Federal Government currently administers programs for 
diabetes and related diseases that the commission is intended 
to address?
    Dr. Leffert. Thank you, Mr. Chairman.
    We have over 30 agencies across the Federal Government 
landscape that are engaged in either diabetes research or 
clinical care. And over the 5-year timeframe from 2007 to 2012, 
there has been a 48 percent increase in the money spent on 
diabetes care and lost productivity due to diabetes. The 
commission will recommend programs and activities to affect the 
quality of life, productivity, cost to society of patients with 
diabetes, prediabetes, and related conditions. Additionally, 
there are examples of inconsistent and sometimes 
counterproductive policies emanating from Federal agencies that 
reflect a lack of communication and coordination in the 
administration of Federal diabetes activities. The commission 
is intended to provide a venue that brings these agencies to 
the table on a consistent basis to improve upon those issues.
    Mr. Pitts. Thank you.
    General Dean, in your written testimony, you state that the 
incidence of underage drinking has been going down in each year 
among 8th, 10th, and 12th graders. If this is true, why do we 
need to continue investment in this STOP Act, and what work is 
still left to be done?
    Mr. Dean. In fact, it is true, but there is much work that 
needs to be done to address underage drinking in the country. 
And we believe that the STOP Act has been a catalyst for these 
improvements, and without it, we don't believe these 
improvements will continue. But we need to keep the pressure up 
to maintain these efforts. Despite our progress, in response to 
our 2015 survey of coalitions, alcohol continues to be the 
number one problem they face in their communities, and also we 
know that students that are underage in universities are 
significantly abusing these as well. The restructuring of the 
STOP Act will cause our coalitions to work directly with higher 
institutions of education to address these problems as well.
    Mr. Pitts. Thank you.
    Ms. Banks, can you elaborate on the biggest barriers to 
quality health care for those suffering from sickle cell 
disease?
    Ms. Banks. Well, I think some of the largest barriers for 
individuals with sickle cell disease, first and foremost is the 
lack of access to care. As mentioned, there is a shortage of 
primary care physicians, and therefore, our patients do not 
have a medical home, which means that they frequent the 
emergency room often, so that is a huge deficit for us. Also, 
there is no comprehensive model of care and what our patients 
lack and what we do not have in our community is a care 
coordination program where someone is actually providing care 
coordination with our patients. Our patients are born with 
sickle cell disease, so we know throughout the lifespan that 
they are going to have it. There is no cure for it. So the goal 
would be for us to coordinate their care throughout the 
lifespan, and that is what is really missing in the sickle cell 
community.
    Mr. Pitts. Thank you.
    Dr. Morrison, how does palliative care specifically help 
those individuals and families of those who are suffering from 
a serious but not necessarily terminal illness?
    Dr. Morrison. Living with a serious illness in this 
country, such as congestive heart failure, chronic obstructive 
pulmonary disease, cancer, Alzheimer's disease, is associated 
with a number of distressing symptoms--pain, breathlessness, 
fatigue, nausea, anxiety--which people live with on a daily 
basis. It provides an enormous strain on family caregivers, who 
often give up their jobs, their work, to care for a seriously 
ill older relative. Palliative care addresses these needs by 
providing an added layer of support to patients, their 
families, and doctors. It treats the pain and symptoms of a 
distressing illness. It helps facilitate communication and 
provides support to patients and families. It addresses 
psychological, emotional, and spiritual needs, and it allows 
them to obtain the best quality of life possible in the setting 
of a serious illness. And it is absent from our American 
healthcare system at this point.
    Mr. Pitts. Thank you.
    Dr. Marino, why is it so difficult to retain patients in 
followup care for their congenital heart disease, and what does 
H.R. 3952 do to help change that?
    Dr. Marino. So one of the programs that I have been 
spearheading at Northwestern is something called the 
cardiovascular bridge programs. So typically in the U.S. today, 
when you are 18 years and 364 days, your doctor will say: It 
has been great taking care of you. Here is the name of a doctor 
in the city. Have him call for the records. Good luck.
    Only one out of four patients that need ongoing 
cardiovascular care actually get that cardiovascular care. What 
this bill is going to do is create awareness among patients and 
parents that when your child has surgery as a baby, it is not 
curative. There are ongoing specific cardiac issues. There are 
developmental issues, kidney and liver issues, that have to be 
dealt with as that child ages and then gets transitioned into 
adulthood.
    In our bridge programs at Northwestern, we literally have a 
team of adult and pediatric providers, social workers, and 
advanced practice nurses that basically work with patients 16 
to 26 to allow these patients to have a graded transition 
instead of an abrupt transition at 18 that will keep them in 
care.
    Beside the awareness, by having the cohort study that is 
put in 3952, that the CDC would put together, we would know 
much more specifically which patients are at the highest risk 
for not following up, which patients are at the highest risk 
for having complications. That will then tell us, of those 
patients that we know we need to follow up, which are the most 
critical to make sure they stay in care.
    And then, lastly, with the NIH putting forth a status 
report on the biomedical research, there is so much research 
that still needs to be done on how best to care for these 
patients, what interventional procedures might result in a 
better quality of life as they transition from an adolescent to 
an adult. By having that new research and that priority for 
that research in place with NIH, we will be able to put new 
care models in place and new treatment models that will help 
these patients transition more effectively from adolescence 
into adulthood.
    Mr. Pitts. The chair thanks the gentleman.
    I now recognize Mr. Green 5 minutes for questions.
    Mr. Green. Thank you, Mr. Chairman.
    Dr. Leffert, diabetes can be effectively managed through 
evidence-based treatments, as well as through behavioral 
changes, including changes in diet, increasing physical 
activity. Some patients still experience devastating 
complications from diabetes, including blindness, kidney 
failure, and limb amputation. Why do these complications occur 
in spite of the availability of the treatments we have?
    Dr. Leffert. Representative Green, the issue really is that 
we have a limited number of endocrinologists who are able to 
take care of patients with diabetes. We have a primary care 
base of physicians who take care of diabetes, but oftentimes, 
they are not all given the tools or the experience to be able 
to take care of these patients in the appropriate way. They 
need a lot of help, and our commission bill would do that.
    In addition, our patients need education. Education is the 
key because this is a self-managed disease, and this bill would 
also help that in relationship to many of the programs that are 
currently being projected by the National Diabetes Education 
Program, which gives patients education towards diabetes.
    Mr. Green. Thank you. It sounds like this commission would 
help us explaining to physicians how we can treat diabetes, 
again, with medication. And I always tell people it is much 
better to have prediabetes than diabetes so that you can manage 
it much better. Thank you.
    The STOP Act became law in 2006, and almost 30 percent of 
the underage individuals who were alcohol users and 19 percent 
were binge users that year. This legislation marked the first 
national comprehensive effort to combat underage drinking. And, 
again, I want to recognize my colleague and classmate, 
Congresswoman Roybal-Allard, for her diligent effort. And like 
I said--before you were here, Lucille--she has worried me about 
this bill for a number of months.
    General Dean, can you talk about the progress you have made 
since 2006 and why reauthorization of these programs is so 
important?
    Mr. Dean. Thank you very much, Ranking Member Green, for 
your interest, your leadership, and your support. We have made 
tremendous progress. Monitoring the Future cites that underage 
drinking percentages are down. They are the lowest they have 
been for years, but we still need to continue to work 
diligently. And what this reauthorization is going to do is not 
only will we be able to provide enhancement grants to 
community-based coalitions that have been trained and 
understand how to tackle and resolve problems in their 
communities, but it is also going to give them a few dollars, 
allow them to work with higher education, colleges and 
universities as well, where we know there is a serious problem 
there too. And we think there are too many losses of life. 
Certainly, we can prevent that. We also can continue to tackle 
the violence and the unfortunate incidents that are taking 
place on our universities as a result of drinking, so there is 
still much work needed to be done, and we believe the 
reauthorization and the way it has been restructured will allow 
us to continue to make progress around this serious underage 
drinking problem.
    Mr. Green. Thank you. Thank you for your effort on that.
    Palliative care is a critically important aspect of 
healthcare system. It does not always garner the attention that 
it warrants.
    Dr. Morrison, can you help this committee understand that 
palliative care, both from its impact on a patient's quality of 
life and the workforce involved, and how does this legislation 
improve the palliative care?
    Dr. Morrison. Thank you for the question. Palliative care 
is a relatively new specialty. It began in the 1990s when a 
number of us said: Why do you have to be dying in order to have 
a good quality of life? And back before palliative care, the 
only real area that focused on improving patient's quality of 
life was hospice. And as we all know, you have to have a 
prognosis of 6 months or less to be able to access hospice in 
this country.
    So it is a relatively new specialty, and it is one of the 
fastest growing specialties in the United States, but we still 
have a workforce issue. We have one palliative medicine 
physician for every 13,000 people with serious illness, and 
this bill addresses this in three ways.
    First of all, it does create a specialist workforce that 
will provide the research, the teaching, and take care of the 
most complex patients and families. But it also provides the 
core knowledge and skills of palliative care to those in 
training and those in practice. I spent 4 years at the 
University of Chicago, 3 years at New York Hospital Cornell 
Medical Center, another 3 years at Mount Sinai, and in that 
entire 10 years of education, had a 30-minute lecture about 
pain management that happened in my first year pharmacology 
course. And it dealt with how drugs like morphine are broken 
down in the liver and excreted in the kidneys. That was the 
extent of my education in how to treat distressing symptoms, 
and we have a generation of healthcare providers with that base 
fund of knowledge.
    So this bill will address that as well by training those 
doctors, nurses, social workers, chaplains, who care for the 
seriously ill in the core knowledge and skills of palliative 
care: pain and symptom management, communication, care 
coordination.
    And, finally, it addresses the evidence gap. We have all 
seen the problem in this country of inappropriate prescribing 
of opioids because we have a generation of doctors who do not 
know how to assess pain, how to manage pain, how to 
appropriately use opioids, and how to identify the problems of 
addiction. I have never had a patient come to me in serious 
pain and say: I would like my pain treated and, oh, by the way, 
I would like to be addicted to the medication afterwards. That 
can be addressed through outreach, and it can be addressed 
through appropriate knowledge and teaching. And that is what 
this bill addresses as well.
    Mr. Green. Mr. Chairman, thank you. And I have some 
questions we will submit. But our committee and the 
subcommittee has actually passed a number of opioid bills. And 
I think you are correct. We need to have training for the 
physicians who are actually prescribing, and hopefully, this 
bill along with the package of bills we passed out.
    Thank you, Mr. Chairman. I yield back.
    Mr. Pitts. The chair thanks the gentleman.
    I now recognize the vice chair of the subcommittee, the 
gentleman from Kentucky, Mr. Guthrie, 5 minutes for questions.
    Mr. Guthrie. Thank you very. I am going to try to get as 
many questions, so if answers could be kind of brief.
    But first, Ms. Banks, I have a friend of mine whose son has 
sickle cell. And I didn't really know that much about it. Dr. 
Burgess has been helping me with it sitting here. But we hired 
him so he would be gainfully employed. And just working with 
his schedule was about my only experience with it.
    So, with this bill, are there any other efforts existing 
within the sickle cell community that would complement this 
bill and allow it to be more expansive to the patient 
population.
    Ms. Banks. Absolutely. Currently, we are in the process--
and when I say ``we,'' I mean SCDAA and many office treatment 
centers or hospitals--are working with community health 
workers. So we have actually instituted what is called a 
community health worker program. What we feel like in the 
sickle cell community is it is going to take a concerted effort 
throughout the community. So we are utilizing not only the 
providers but also community-based organizations and utilizing 
community health workers to actually go into the field, find 
these patients, because a lot of our patients are lost, meaning 
they haven't been to a physician in a year or so. And that is 
not good for them and their health. And then not only are they 
finding these individuals, but they are getting them into a 
medical home. So the goal is that you find the patient, but 
then you enroll the patient or you help that patient find 
medical care.
    In addition, SCDAA has launched a national patient 
registry, which is the first ever of its kind. It is a patient-
powered registry. We know that it is long overdue in the sickle 
cell community. We know that it is going to help us to collect 
the data that we need. But also, along with collecting that 
data, this is patient-powered. So it allows the patient to 
communicate with the physicians. It allows the patient to 
actually manage their care via technology. And also it allows 
the patient to be up-to-date on treatments and research that is 
going on in the community for sickle cell patients.
    Mr. Guthrie. OK. Thank you very much.
    Dr. Marino, great to see that Northwestern is doing good 
work. I am moving my daughter there Monday. So she will be on 
the Evanston campus. So, in your testimony, you mentioned the 
use of Canadian data. What type of U.S. data do we have, and 
why do have to use the Canadian data? I would just let you 
expand on that.
    Dr. Marino. Mr. Guthrie, first, congratulations to your 
daughter. Northwestern is a very, very tough school to get 
into. So congratulations to her.
    There is no data in the U.S. What we have is single-center 
data of very small numbers of individuals that we can't 
extrapolate to national data. And because the data is collected 
very differently at the different centers, with variable 
definitions that don't match, you can't take 10 or 15 centers 
and put the data together. Because the Canadians have a 
national health system, they actually have a national data set 
that allows them in a very specific way, like Denmark as well, 
to gather this longitudinal date on the congenital heart 
disease patients. So 3952 would specifically have the CDC 
create a cohort study in the United States that would follow 
this very high-risk complex CHD population over time to collect 
that similar data. We don't know if what we have in the U.S. is 
different than Canada or if it is the same. There is just no 
data.
    Mr. Guthrie. OK. Well, maybe on one of my visits over the 
next little while, I will be able to see what you guys are 
doing. That would be interesting to see.
    So, General, I just want to ask you a question. And 
congratulations on your service and obviously reaching one of 
the top ranks in the military. That says a lot about your 
ability. Why is training pediatric healthcare providers in 
screening--let me start over. Why is training pediatric 
healthcare providers in screening, brief intervention, and 
referral to treatment important? And why is the provision on 
this being added to the STOP Act? And can you discuss how this 
new provision's authorization will work within the overall 
authorization for the bill?
    Mr. Dean. Thank you for your question. It is a very 
important question. It is a, we believe, significant change in 
the restructure of this reauthorization. And we are very 
excited about the inclusion of--we call it SBIRT for pediatric 
healthcare providers. It is a strong complement to the 
universal prevention as it allows youth who have been misusing 
substances to be identified more readily and to get effective 
intervention in a larger number of community settings. We also 
know it is effective. And a 6-month followup with SBIRT 
participants found that heavy alcohol consumption was 39 
percent lower among individuals who initially screened positive 
for hazardous drugs and alcohol use. So screening early, 
training pediatric providers to do this, we have found already 
it is reducing the consumption by young people.
    Mr. Guthrie. OK. Thank you.
    And, Dr. Leffert, what are the expectations that the 
clinical care commission can establish within the next 3 years? 
I guess you have 3 seconds to tell me that. So I apologize.
    Dr. Leffert. Well, as you know--thank you for the question, 
Representative Guthrie. As you know, diabetes is a big issue, 
and there are a lot of issues going along with it but. But we 
would hope that the process would allow for federally funded 
research initiatives from the bench to the bedside so that 
patients could have access to 21st century cures and 
innovations, and that these would become more coherent and 
synergistic, and that there would be better communication and 
coordination among the agencies, specifically NIH, FDA, and 
CMS. The commission would also help focus the efforts of the 
government research community toward improving clinical care 
for people with diabetes and to slow the incremental rise in 
diabetes and its associated complications.
    Mr. Guthrie. Thank you very much.
    My time has expired, so I yield back.
    Mr. Pitts. The chair thanks the gentleman.
    I now recognize the ranking member of the full committee, 
Mr. Pallone, 5 minutes for questions.
    Mr. Pallone. Thank you, Mr. Chairman.
    I wanted to ask Dr. Morrison to focus on the palliative 
care legislation, you know, both the access to treatment but 
also the services available to those individuals to cope with 
their conditions. First, from diagnosis, what is the most 
common diagnosis for individuals who receive palliative care 
services?
    Dr. Morrison. The common diagnoses are what we consider to 
be serious illness. So it is cancer, heart disease, advanced 
lung disease, Alzheimer's disease and related dementias, and 
neuromuscular diseases such as Lou Gehrig's disease or 
amyotrophic lateral sclerosis. In children, it is really two 
large groups of diseases. One is obviously cancer, and the 
other is congenital or genetic diseases. And because of 
advances in pediatrics, we have a whole population now of kids 
who are living long, long periods of time. And that is 
wonderful. However, they are living with multiple symptoms and 
high caregiver burden on their families.
    Mr. Pallone. Well, you mention symptoms. What are the most 
common symptoms that are treated with palliative care?
    Dr. Morrison. They are what you would anticipate: pain, 
breathlessness, fatigue, nausea, anxiety. In children, it is 
primarily fatigue. And it is the one symptom for which we have 
really no effective treatments as of yet because of the lack of 
the evidence base and the lack of the research science.
    Mr. Pallone. All right. Now, let me ask a couple questions 
about access. Do most people battling serious health 
conditions, such as cancer, have access to palliative care 
services, and what are some of the consequences for individuals 
with serious illness who don't have access?
    Dr. Morrison. It is a very good question. What we know from 
a study actually we did earlier this year was that now 97 
percent of mid- to large-size hospitals in the United States 
now have palliative care teams. And if we look at the Medicare 
population, about 75 percent of all Medicare beneficiaries who 
die live in an area where they could potentially access 
palliative care. The problem is that those hospital teams are 
relatively small and, because they are still understaffed, see 
only a small proportion of the number of patients and families 
who could truly benefit. What we have seen in the past 3 years 
also, however, is the expansion of palliative care into the 
community, particularly in Medicare Advantage plans and 
commercial plans, which aren't limited by the fee-for-service 
structure of the traditional Medicare program. So we are seeing 
some very, very new and exciting models of care happening in 
the community, particularly in Tennessee and Nashville, as was 
said earlier.
    Mr. Pallone. Well, in terms of increasing access to 
important services, how can we increase it? How does this bill 
help?
    Dr. Morrison. I think it helps in three ways. The first is 
that, because palliative care is a relatively new specialty, 
most people don't know what it is. Again, a survey that we did 
with the American Cancer Society several years ago showed that 
about 80 percent of a national representative sample had never 
heard of palliative care and didn't know what it was. And yet, 
when we read a definition to them, over 90 percent said that 
this is what they would want for themselves and their families. 
Providers too don't understand palliative care and too often 
confuse it with hospice and end-of-life care, when the reality 
is palliative care is for everybody. It is not dependent on 
prognosis. And in fact, we provide it to people we expect to be 
cured. So there is an educational campaign awareness that needs 
to happen.
    And the second issue is we need to address the workforce 
gap. Every single clinician in this country who cares for 
somebody with serious illness needs to be able to treat pain 
appropriately, manage breathlessness. Talk to them about how a 
serious illness--I have probably as much training, sir, as you 
in how to talk to somebody and break bad news that you have 
cancer. When I finished medical school, we had the same amount 
of training in terms of how to have that conversation. And we 
need to address that through our medical schools and our 
training programs and to physicians like me who are in 
practice. This bill will do this as well.
    Mr. Pallone. Well, thank you. I am just trying to get in 
one question for General Dean about strategies for preventing 
underage drinking. I just want to learn more about the methods 
to prevent underage drinking. General Dean, what types of 
strategies and programs work best to prevent underage drinking, 
and what evidence is available to prove that these 
interventions work?
    Mr. Dean. OK. Thank you, Congressman. It is a great 
question. We believe that by mobilizing the entire community--
what I mean by that is all of the sectors in the community: 
parents, teachers, youth, the police, business providers, faith 
community, civic business leaders all coming together. And we 
have built over the last 25 years a strategy, an academy type 
approach, to train the members of the community how to identify 
their problems, how to address their problems, and how to 
implement evidence-based strategies to reduce their problems. 
There have been evaluations done by the Office of National Drug 
Control Policy independent of CADCA that show that when these 
communities have been trained, the results are significant. And 
we have great examples. In the interest of time, I will not 
cover them with you. But I do have several examples here where 
communities have reduced their underage drinking by large 
percentages, 20, 30, 40, 50 percent, using these methods.
    Mr. Pallone. Well, through the chairman, if maybe we could 
ask him in writing to follow up with and give us those 
examples. Mr. Chairman, with your permission, he mentioned that 
he doesn't have the time to give some examples. So, with your 
permission, maybe we could have him follow up in writing and 
give us that information.
    Mr. Pitts. I am sorry. I was talking.
    Mr. Pallone. No, I know. That is all right. He wanted to 
give me some examples, but in the interest of time, he is not 
doing it. I was going to ask if he could do it in writing.
    Mr. Pitts. Yes. We will submit that to you in writing and 
ask you to please respond.
    Mr. Dean. I will be glad to. I have several examples of 
communities that have made significant progress, some exceeding 
50 percent reduction using these community-based strategies to 
reduce underage drinking all across the country, both rural, 
urban, as well as suburban.
    Mr. Pallone. Thank you.
    Mr. Pitts. Very good. Thank you.
    The chair now recognizes Dr. Burgess 5 minutes for 
questions.
    Mr. Burgess. Well, thank you, Mr. Chairman.
    And thanks to the panel for being here.
    It has been a very interesting morning listening to you 
all.
    Ms. Banks, let me just ask you, and I was struck in your 
testimony, both the written testimony and your testimony here 
this morning, you say it has been decades since there has been 
a new FDA-approved treatment for sickle cell. Is that correct?
    Ms. Banks. Correct.
    Mr. Burgess. So my recollection of Parkland Hospital in the 
1970s is actually pretty much current therapy. Is that right?
    Ms. Banks. Correct.
    Mr. Burgess. I referenced this in my opening statement, 
this committee has spent a lot of time on a bill, H.R. 6, 
called Cures for the 21st Century. And although sickle cell--
and we tried not to have disease-specific parts of the bill, I 
mean, this just strikes me as one of those areas where the type 
of translational research that would go across the National 
Institute of Health or would give the National Institute of 
Health Director much more discretion as to what they researched 
and what they funded, that this would be one of those areas.
    And I just went on clinicaltrials.gov to look for the 
current clinical trials in sickle cell, and there weren't as 
many as I thought there ought to be for a disease of this 
magnitude that is so pervasive in the community. I mean, is 
that a reasonable assumption I have made looking at 
clinicaltrials.gov?
    Ms. Banks. Actually, you are correct. We are always wanting 
more research for sickle cell disease. I will say this.
    Mr. Pitts. Poke your microphone.
    Ms. Banks. Oh, I am sorry. I will say this. About 7 years 
ago, when I started the Sickle Cell Disease Association of 
America, we literally had about two pharmaceutical companies in 
the space for sickle cell disease, and today we with about 16. 
So it is looking up for sickle cell disease. Of course, we 
still have to get over that hurdle of getting individuals in 
those trials and going through that. But it is hopeful.
    But I totally agree with you. Sickle cell disease has long 
been forgotten. And over 100 years--this is probably one of the 
oldest diseases for its discovery out there--for there only to 
be one drug for treatment--and by the way, that drug is 
hydroxyurea. That drug was not approved for sickle cell 
disease. It is an actual cancer drug. So, really, when you look 
at those kinds of issues, it is long overdue in the sickle cell 
community.
    Mr. Burgess. Yes. And I appreciate your comments on that. 
And it is something we will keep an eye on in this committee 
because, of course, I am going to be optimistic that we are 
going to get Cures for the 21st Century done in this Congress. 
But there will also be an FDA reauthorization that takes place 
in the next Congress. And that is another appropriate place to 
focus on this.
    General Dean, I want to ask you a question. It is probably 
not fair because it is not on the bill that you came to testify 
on. But in your role as the CEO of Community Anti-Drug 
Coalitions of America, I got asked a question by a constituent, 
and I didn't know the answer. And I was a little bit 
embarrassed that I didn't know the answer. And if you don't 
know the answer, it is OK. You don't need to be embarrassed. 
Perhaps you can point me in the direction that I need to go. 
There is a woman who came into my office. She had lost her son 
in a--he was a pedestrian struck by a vehicle. He was in a 
crosswalk. The individual who was driving the vehicle was not 
issued a ticket or a citation. He did have alcohol in his 
system, but it was under the .08 limit in the State of Texas. 
But he also had a positive qualitative test for the active 
ingredient in marijuana. OK. It seems to me that--and 
obviously, this would be a state law, but does your group look 
at, now that there are more and more states that are providing 
a legal avenue for consumption of marijuana, does your group 
look at the additive multiplicative effects of drugs and 
alcohol? Do states need to perhaps reconsider what their limits 
are? This just struck me--of course, it is a very tragic and 
unfortunate case. But that just seemed like it was one of those 
things that cried out for something in addition to be done.
    Now, law enforcement made, their position was, as far as 
laws of the State of Texas, we don't prosecute for having small 
amounts of marijuana in your blood. And this was a qualitative 
test, not a quantitative test, so we don't even know to what 
degree of intoxication there might have occurred from that, but 
from the alcohol standpoint, under the legal limit of 
intoxication.
    Mr. Dean. To answer your question, Congressman, we do care 
about this issue very much. We do watch and observe what is 
happening in states that have, first, through citizen votes 
decreed that marijuana is medicine. It obviously has not gone 
through the FDA process for that to be done. So we watch that 
carefully. We also are watching the states where they have--
through citizens have passed it for recreational use. And we 
have seen, looking at data coming out of States like Colorado, 
Washington, and others, that there is a substantial increase in 
citizens, both young and old, driving under the influence of 
drugs versus alcohol. And in some cases, there are more 
impaired drivers on the streets these days in those locations 
from drugs than there are from alcohol.
    So the law enforcement challenge is having the appropriate 
instruments and tests to test for it. It is not as simple as it 
is for alcohol. And, therefore, it becomes challenging for them 
to do that. So the answer is we are seeing the results. We are 
seeing the impact. We are concerned about it, and the law 
enforcement community is extremely concerned about it.
    Mr. Burgess. Well, I will have my office follow up with 
you. We may have further discussion about this. But you are the 
first person who has come to this committee who might know 
something about this. And I do want to follow up with you. And 
I would appreciate the opportunity to do so.
    Mr. Dean. It would be our pleasure.
    Mr. Burgess. And, Mr. Chairman, I also would ask unanimous 
consent, I have a 2013 article, but it is the most recent one I 
could find, ``Current Management of Sickle Cell Anemia,'' and I 
would like to submit this for the record.
    Mr. Pitts. Without objection, so ordered.
    [The information appears at the conclusion of the hearing.]
    Mr. Pitts. The gentleman yields back.
    The chair now recognizes the gentleman from North Carolina, 
Judge Butterfield, 5 minutes for questions.
    Mr. Butterfield. Thank you, Mr. Chairman.
    Ms. Banks, I want to come back to you for just a couple of 
minutes, if you don't mind. Ms. Banks, can you describe for me 
how diminishing Federal funding, including lack of funding for 
treatment centers, has made it more difficult for people with 
sickle cell disease to get the care that they need?
    Ms. Banks. Sure. Of course, with every disease, especially 
with the complications in sickle cell disease, it is a 
challenge when you do not have the funding in place. 
Eventually, when the bill was first passed, because this is a 
reauthorization, there was a place in the bill where it said 40 
treatment centers. To my knowledge, sickle cell only received 
10 of those treatment centers or 10 of those treatment centers 
were funded. Because of that, our patients basically do not 
have a medical home. That is the reason why a lot of them 
frequent the emergency room. So, when you talk about 
diminishing Federal funding, you are looking at, where do our 
patients go for access to care? That is extremely, extremely 
important.
    In this bill, we ask for 25 treatment centers, because we 
wanted to be very realistic in our ask and we wanted those 25 
centers to be in areas where there are high populations of 
individuals with sickle cell disease. We are hoping that that 
would provide some coverage. We know it will not for 100,000 
patients, but it would provide some coverage for our patients 
and somewhere to go.
    It is very interesting, in comparable diseases, for 
instance, with cystic fibrosis, they have over 100 treatment 
centers. With hemophilia, I think they have over 40, 42. So, 
with sickle cell disease, only having 10 funded, you can see 
with 100,000 patients where we are at a huge deficit.
    Mr. Butterfield. Is it true that African American children 
have higher rates of disease in trait? Is that an accurate 
statement?
    Ms. Banks. Say that again.
    Mr. Butterfield. That black children, African American 
children, have higher rates of disease.
    Ms. Banks. Of sickle cell disease?
    Mr. Butterfield. Yes, of sickle cell disease.
    Ms. Banks. Yes.
    Mr. Butterfield. Yes. And what proportion would you say of 
African American babies are screened for this disease at birth?
    Ms. Banks. Well, actually, it is mandatory in every state. 
So, right now, every state screens for sickle cell disease when 
you are born.
    Mr. Butterfield. It is a Federal mandate or a state 
mandate?
    Ms. Banks. It is Federal.
    Mr. Butterfield. Yes. All right. Are there any barriers 
that prevent babies from being screened for sickle cell? Are 
there any barriers that would prevent that from happening at 
birth? Or is it completely uniform across the board?
    Ms. Banks. To my knowledge, it is completely uniform across 
the board.
    Mr. Butterfield. All right.
    Ms. Banks. Our issue, Congressman Butterfield, is that, 
years ago, when sickle cell was very prevalent and people heard 
about it, it was because babies were dying. And so, because of 
treatments, because of the newborn screening, babies are living 
well into adolescence. Our issue now is transition, and where 
do you go after you are 14, 15 and you begin to transition into 
young adult care? That is where we are having the shortage of 
adult hematologists or adult primary care physicians for those 
individuals. So now the challenge in sickle cell disease is 
where our babies are getting better, they are living through 
teens and young adult, and they don't have a place to go. So 
when you go to college, when you get to that college age, where 
do you start? I was talking to my chief medical officer, and it 
is interesting because there are individuals 24 and 25 years of 
age still going to pediatric physicians, a hematologist, 
because they do not have an adult physician that would treat 
their disease in a system in managing their disease.
    Mr. Butterfield. Would you discuss the barriers, if any, 
facing African Americans from being screened or receiving 
treatment for sickle cell disease?
    Ms. Banks. I think the barriers for African Americans, 
particularly--or anyone with the disease pretty much is, again, 
the lack of a medical home. Our patients have been stigmatized 
mainly because the key issue is pain. And if you are 
frequenting the emergency room for pain, what are you going to 
be classified as? For most, our patients feel as if they are 
ostracized because when they go in, they are going for drugs. 
And it is because we do not have any drugs for treatment of the 
disease that we are treating our patients with opioids. So that 
is a huge barrier in the African American community. But it is 
a huge barrier in the sickle cell community as a whole.
    Mr. Butterfield. Thank you. You are very kind.
    I yield back, Mr. Chairman.
    Mr. Pitts. The chair thanks the gentleman.
    I now recognize the chair emeritus of the full committee, 
Mr. Barton, 5 minutes for questions.
    Mr. Barton. Mr. Chairman, I don't have any questions, and I 
am late arriving. So I am going to yield to the members who 
have been here.
    Mr. Pitts. I recognize the gentleman from Florida. You are 
recognized for 5 minutes.
    Mr. Bilirakis. Thank you, Mr. Chairman.
    I appreciate it. Thank you, Mr. Chairman.
    Again, I want to thank Chairman Pitts and Ranking Member 
Green for holding this very important hearing and including my 
bill, the Congenital Heart Futures Reauthorization Act. I 
appreciate it so very much. This legislation provided a 5-year 
reauthorization to the underlying law that I coauthored back in 
2009. The Congenital Heart Futures Reauthorization Act will 
continue the CDC surveillance program, continue to provide NIH 
grants for further congenital heart disease research, and 
require NIH to report on their ongoing research efforts. 
Congenital heart disease is the number one cause of birth 
defects related deaths. Twenty-five percent of children born 
with a congenital heart defect will need heart surgery or other 
interventions to survive. An estimated 2 to 3 million people 
are living with CHD. And individuals with CHD have an ER 
visitation rate of three to four times higher than the general 
population. The Congenital Heart Futures Reauthorization Act 
will continue our commitment to monitoring and increasing the 
available research and helping people born with a congenital 
heart defect. I would like to ask unanimous consent, Mr. 
Chairman, to introduce these letters of support: the Pediatric 
Congenital Heart Association, a letter from the Adult 
Congenital Heart Association, and a letter from the American 
Society of Echocardiography. I would like to ask unanimous 
consent.
    Mr. Pitts. Without objection, so ordered.
    [The information appears at the conclusion of the hearing.]
    Mr. Bilirakis. Thank you very much.
    And I have a couple questions for Dr. Marino. Dr. Marino, 
what are the biggest challenges facing children and adults with 
CHDs as they age, and how will the Congenital Heart Futures 
Reauthorization Act help meet these challenges?
    Thank you again, sir, for testifying today.
    Dr. Marino. Congressman, thank you very much. We greatly 
appreciate your support.
    It is a great question. Simply put, when you have your 
surgery as a baby, you are not cured. And we know that these 
patients have specific neurodevelopmental issues that come from 
brain injury from when they had their surgery as a baby. We 
know that they have specific cardiovascular complications. Many 
of them go on to heart failure and need heart transplantation. 
They might need a ventricular assist device, mechanical support 
device. They often have abnormal heart rhythms. They often have 
decreased exercise function. These patients will also--many of 
them have kidney or liver injury from their original therapies 
when they were a baby.
    So, with this complex medical milieu of multisystem organ 
failure, they then now need to transition from an adolescent 
care model to an adult care model. You have heard from several 
of the other witnesses who are testifying today that there is 
lack of adult providers who can care for these types of 
patients that survive the childhood illness and then now move 
on to adult care. Adult congenital heart disease physicians are 
in--we have the same dearth of care providers. You have heard 
about palliative care and sickle cell disease. While there is 
now an accreditation for adult congenital heart disease care, 
there are still very few adult congenital heart disease care 
certified individuals nationally.
    And then probably the last part which we discussed a little 
bit earlier was that, right now, there is no specific means by 
which we transfer these high-risk complex patients into adult 
care. And if you just hand off a patient at age 18, it is very 
unlikely, actually, that they are going to get followup care. 
And what we know--and I want to focus on cost for a second--if 
you get patients into appropriate followup care and you 
minimize secondary complications as adult congenital patients, 
you will lower overall costs to the system. And given that more 
than 50 percent of these patients will be cared for through 
Medicaid as children and then Medicare as adults, if we can 
find ways to transition them better, not lose three out of four 
patients during that transition process, it will likely lower 
the overall costs for these 2.4 million individuals nationally 
who survive with adult congenital heart disease.
    Mr. Bilirakis. A very good point. Thank you so much.
    Next question, the Congenital Heart Futures Reauthorization 
Act specifically calls for a cohort study. How does this differ 
from current surveillance techniques being used to study CHD, 
and why is this needed?
    Dr. Marino. So, if you look over the last 20 years, there 
are lots of individual center studies trying to benchmark how 
these patients are doing. They don't talk to each other 
relative to a data standpoint. When I was at Harvard, working 
at Boston Children's Hospital or Children's Hospital 
Philadelphia or Cincinnati Children's or now at Lurie 
Children's during periods of my training and now my faculty 
positions, the data that is collected for these individual 
studies are all quite different. The definitions used to codify 
the patients and codify the complications that we have talked 
about are very, very different. So I can't take 10 different 
studies from 10 different centers and pull them together into a 
cohesive whole.
    What 3952 will allow is for the CDC for the first time in 
the United States--and by the way, this has been done in at 
least a dozen other countries around the world--take the U.S. 
population, start collecting data at dozens of centers with the 
same variables, the same data set, and then follow them 
longitudinally, not just over 2 years, hopefully over decades, 
for us to get a much better sense for, what is the true 
incidence and prevalence of these complications that I have 
alluded to? What are the impacts of treatments that we then 
bring into the care models for these patients nationally? And 
then, more importantly, when it comes to transition, how do we 
best predict who is not going to have effective transition, who 
will, and then get the supports in place in adolescence to make 
sure we don't lose three out of four of these patients. Because 
I can tell you, in my work in Northwestern, there are literally 
dozens and dozens of patients each year that walk into us at 
Northwestern Memorial Hospital, who have been out of care, 
cardiac care, for 5 years, 10 years, who literally are near 
death. And I know for a fact if they had actually had 
appropriate transition and actually stayed in care, they likely 
would have survived multiple more decades with a great quality 
of life.
    Mr. Bilirakis. Well, thank you very much, doctor.
    I want to thank the entire panel for their testimony.
    And I yield back. I appreciate it.
    Mr. Pitts. The chair thanks the gentleman.
    I now recognize the gentlelady from Illinois, Ms. 
Schakowsky, 5 minutes for questions.
    Ms. Schakowsky. Well, first, let me just apologize. It is 
hard to be everywhere at once. I was looking forward to hearing 
from you. And I want to thank you so much for being here, all 
of you.
    I want to say I am proud to see that Dr. Marino is here 
from Lurie Children's Hospital, and I just want to acknowledge 
the unparalleled care that you provide for not just the 
children of Chicago but many who come to the hospital.
    I have really focused for much of my public career, both in 
the Illinois legislature and now here, on improving senior 
citizens' access to health care. Along with my colleague Doris 
Matsui, I have served as the co-chair of the House Seniors Task 
Force. Given that 10,000 people turn 65 every day, it is 
imperative that we really work to address the specific health 
needs of seniors.
    So, Dr. Morrison, let me focus on that. I am interested in 
hearing how the aging of our population is going to affect the 
need for palliative care services moving forward, and by the 
way, you might want to distinguish between hospice and 
palliative care as you talk. Specifically, I am interested in 
hearing more about a statement you included in your written 
testimony that says: ``Over the next decade, most healthcare 
professionals will be caring for seriously ill older adults and 
their families with multiple chronic conditions, multiyear 
illnesses, and intermittent crises interspersed with periods of 
relative stability.'' So how is this going to affect the need 
for palliative care services among the population, this 
population, as well as a workforce trained in palliative care?
    Dr. Morrison. Thank you, Congresswoman.
    And as a geriatrician, thank you so much for your work for 
older adults in this country.
    Let me take this in two ways. First, let me clearly 
differentiate between hospice and palliative care. Hospice was 
started in this country in the 1970s really as an alternative 
to life-prolonging curative treatment when it was recognized 
that many people near the end of life were experiencing 
distressing symptoms and very high care needs. And it has been 
a wonderful system of care since 1972, and even more so since 
Medicare covered hospice in 1982.
    The problem with hospice is that you have to be dying to 
access it. And you to have a predictable prognosis of 6 months 
or less. And for those of us who began in palliative care, the 
question was, why should you be dying to have efforts focused 
on enhancing your quality of life?
    When we look at the aging of the population, as you pointed 
out, it is the fastest growing segment in the United States. 
And for most of us, the time after the age of 65 or 70 is going 
to be many, many years of a very good quality of life. It will 
be time to integrate our work and life experiences. It will be 
time spent with our children and our grandchildren. But most of 
us, those of us who aren't killed crossing the street or have a 
sudden death, will develop a series of chronic ongoing 
progressive illnesses: heart disease, lung disease, even 
cancer, for which we have transitioned many cancers into 
chronic illnesses. And as we age, we will have more and more of 
those: diabetes, frailty, multiple chronic conditions. And the 
data that we have now suggests that most of us will spend at 
least 7 years of our life in that state. And the data that we 
have nationally suggests that 70 percent of older Americans 
with a serious illness have three or more distressing symptoms 
on a daily basis. And we can do better.
    The last years of our life, the last 5, 10 years, should 
not mean living with daily symptoms. It should not mean 
tremendous burdens on our children and our grandchildren to 
care for us. And it should not mean bankrupting Medicare to 
care for those. And palliative care, as a relatively new 
specialty, has demonstrated that it meets all those needs.
    First of all, we have a wealth of data that palliative care 
teams improve symptoms. They make people feel better and their 
quality of life better. Secondly, it improves caregiver well-
being and reduces burdens on caregivers. And, thirdly, by 
really providing the right care to the right people at the 
right time, it reduces costs largely by providing that added 
layer of support in caring for people where they want to be 
cared for, in the home. In New York City, if my 85-year-old 
patient falls in the middle of the night and his wife can't get 
him up and he is struggling to breathe because of heart 
failure, right now, she calls a doctor's office. And when you 
call the doctor's office in New York City, what do you get? If 
this is a medical emergency, please call 911. And maybe you 
will get a voice at the end of the phone. If you call our 
palliative care team, you get a real person at the end of the 
phone. You may get somebody to come into the home. And you will 
have in place a plan to deal with predictable crises for older 
adults. That is the added layer of support that palliative care 
can provide to our healthcare system.
    Ms. Schakowsky. Perfect. Thank you.
    Dr. Morrison. Thank you.
    Mr. Pitts. The gentlelady yields back.
    The chair now recognizes the gentleman from Missouri, Mr. 
Long, 5 minutes for questions.
    Mr. Long. Thank you, Mr. Chairman.
    And, Dr. Morrison, how long has palliative care been 
around?
    Dr. Morrison. Palliative care really developed as a 
specialty in about the mid-1990s, as I said, when we had this 
lightbulb go off that said: You don't have to be dying to have 
good quality of life.
    But it only became a sub-specialty in 2008. So it has 
really only been since 2008 that the American Board of Medical 
Specialties has recognized palliative care as a specialty. And 
so it is a very young field.
    Mr. Long. My mom passed away in 2009. And I remember that 
when they came in and said, ``We need to talk about palliative 
care,'' that was the first that I had really heard about it.
    My series of questions are for you, Dr. Morrison. They 
focus on the care and support needs of individuals with 
Alzheimer's disease and other dementias. Could you elaborate on 
how palliative care could benefit people with Alzheimer's?
    Dr. Morrison. Yes. Absolutely. As you know, the prevalence 
of Alzheimer's disease is increasing rapidly in the United 
States, largely as we have made tremendous progress in treating 
other diseases. Alzheimer's disease fits in many respects 
perfectly within the paradigm of palliative care. It is a 
multiyear illness. Families, as cognitive status declines, 
patients are more and more dependent upon their families. It is 
a disease that is associated with a tremendous symptom burden. 
All of the diseases that people had before Alzheimer's disease, 
their osteoarthritis, their heart disease that causes 
breathlessness, their lung disease, don't go away in the 
setting of Alzheimer's disease. What happens, though, is people 
can't tell you that they are breathless. They can't tell you 
that they are in pain. They can't tell you that they are hungry 
because of cognitive impairment. And so the suffering 
continues, but the suffering continues silently.
    It is also a disease that has periods of stability where 
people will be the same for long periods of time and then there 
will be a crisis, an infection, a pneumonia, a urinary 
infection, a pressure ulcer. And so it doesn't fit well within 
our current model of hospice because people with Alzheimer's 
disease aren't dying quickly. They are actually living for a 
long period of time. And what they do is they need support, and 
they need then crisis intervention, which palliative care can 
provide, and then ongoing support after that throughout the 
course of that illness. And, as importantly, Alzheimer's 
disease is not just a disease that affects the patient. All of 
us who have had a loved one with dementia or know somebody know 
that it extends to the family as well, and that the burden on 
families is almost as great as the patient itself, and that, as 
a specialty, palliative care focuses on both the patient and 
the family as the unit of care.
    Mr. Long. OK. Thank you. My aunt passed away from 
Alzheimer's about 6 weeks ago. So I can relate to everything 
you are saying there.
    How easy is it for individuals to gain access to palliative 
services today? Second part, are there enough providers 
offering these services across different settings? And are 
there enough new providers being trained in this space to meet 
patient needs?
    Dr. Morrison. Moderately easy, no, and no. And let me 
elaborate.
    Mr. Long. OK.
    Dr. Morrison. The first is that we have built over the past 
20 years, largely because of private sector philanthropy and 
investment in infrastructure to support the development of 
palliative care. So, right now, 95 percent of our mid- to 
large-size hospitals have palliative care teams. And over two-
thirds of all American hospitals have that infrastructure in 
place.
    The issue is, as you pointed out, it is the workforce, that 
we actually don't have enough providers to be able to provide 
those services to everyone in need. And we really need two 
things. First of all, we need a specialist workforce not to 
take care of everybody with serious illness. That will never 
happen, and that should not be our goal. We need specialists to 
teach, to do the necessary research, and take care of the most 
complex patients and their families. And that is what the 
provisions of 3119 provide.
    But, as importantly, we need to train every clinician who 
cares with somebody with serious illness in the core knowledge 
and skills of palliative care so that every doctor in this 
country knows how to treat pain effectively, every nurse knows 
how to communicate serious illness to somebody, and we have a 
care system that can provide that added layer of support for 
that very small but very expensive and very vulnerable patient 
population.
    Mr. Long. Lastly, I would like to know, how do the needs 
differ of the older patients from the needs of younger patients 
as relates to providing palliative services, and do current 
training opportunities address these differences?
    Dr. Morrison. It is a very good question. For most younger 
adults, most younger adults are typically living with a single 
illness. Is it cancer? Heart disease? For children, cystic 
fibrosis. For older adults, it is much more complex, because 
most of us, when we age, will develop multiple chronic 
conditions that all intersect and all affect our quality of 
life. So it is not just cancer. It is cancer. It is heart 
disease. It is debilitating arthritis. It is diabetes. And it 
is both cognitive impairment, Alzheimer's disease, and often 
functional impairment, difficulty walking. So it is a much more 
complex population in many respects. I think what we have done 
very well within our field is the collaboration with 
geriatrics. The recognition that we will never have enough 
geriatricians, we will never have enough palliative care 
physicians to treat the population, the older adult population 
that need, and it requires a collaboration and for us to break 
out beyond specialist-level care to think about population-
related care. And that is one of the reasons that 3119, the 
bill before you, is modeled after the very successful Geriatric 
Academic Career Awards. Because that was such a good model for 
improving access to care for----
    Mr. Long. Speaking of 3119, that is how many minutes I am 
past time. So I yield back.
    Dr. Morrison. I apologize, sir.
    Mr. Pitts. The chair thanks the gentleman and now 
recognizes the gentleman from California, Mr. Cardenas, 5 
minutes for questions.
    Mr. Cardenas. Thank you very much, Mr. Chairman. And thank 
you for having this important hearing. First, I would like to 
recognize and thank my colleague Lucille Roybal-Allard for 
championing the legislation H.R. 1717, which is part of this 
hearing today, the Sober Truth in Preventing Underage Drinking 
Reauthorization Act. It is unfortunate that, being on 
Appropriations, you are not allowed to be on Energy and 
Commerce.
    But thank you, colleague Lucille Roybal-Allard, for being 
here and for introducing that great bipartisan legislation.
    My questions today are based on diabetes. And I would like 
to ask some questions to Dr. Leffert. If you don't mind 
explaining to us what prediabetes is and how it increases the 
risk of an individual developing type 2 diabetes.
    Dr. Leffert. Thank you, Congressman.
    Prediabetes is the process of developing diabetes but 
before that happens. So the genetic and environmental process 
results in a situation where what we call glucose intolerance 
or impaired fasting glucose. Both of those conditions are what 
we now have termed prediabetes. The issue with prediabetes is 
that prediabetes is a surrogate for cardiovascular disease. So, 
in people who have prediabetes, the risk for cardiovascular 
disease goes up, and then the disease process then may progress 
on to type 2 diabetes. So it has both an effect in and of 
itself and also as a progenitor towards type 2 diabetes. The 
data, I think, is that about a third of the patients will go on 
to type 2 diabetes, about a third of the patients will remain 
prediabetic, and about a third of the patients will regress if 
they start with diet and exercise. And so the main issue in 
prediabetes for our population and why it is such a huge issue 
is because of the fact that it is associated with obesity and 
genetic factors, particularly among populations, like African 
Americans and Hispanics, in our country.
    Mr. Cardenas. And with proper education and cooperation 
with their health providers, et cetera, a person can decrease 
their chance of going from prediabetic to developing type 2 
diabetes?
    Dr. Leffert. That is absolutely correct. And I think that 
should be a big push of what we are doing in our healthcare 
prevention, meaning keeping people at the level of prediabetes 
or moving backward would be the most important aspect of what 
we do. And we can do that through a recognized approach toward 
nutrition therapy, toward dietary therapy, toward exercise. And 
there have been programs that have been done through the 
diabetes prevention program that have been successful in doing 
that particular thing itself.
    Mr. Cardenas. OK. How can the commission improve our 
ability to reduce the development of diabetes among individuals 
with prediabetes?
    Dr. Leffert. Well, I think, again, it is a coordination 
issue. I think our Federal Government has a number of different 
agencies that are all working somewhat in silos. And I think 
our commission would allow us to have all of the organizations, 
including the private sector, industry, and other organizations 
together, to be able to coordinate that effort and prevent the 
onset of diabetes if we have people who have prediabetes.
    Mr. Cardenas. Now, obviously, there is a quality-of-life 
issue for somebody to not develop into having type 2 diabetes. 
But what quantifiable numbers when it comes to dollars would be 
saved if we were more successful in our efforts and coordinated 
better like you just described? Are we talking just a few 
million dollars a year to our economy, or are we talking 
billions of dollars?
    Dr. Leffert. I think we are talking more like billions of 
dollars because I think the issue, when we go from prediabetes 
to diabetes and the hospitalizations that are associated with 
diabetes, the complications of diabetes related to kidney 
disease, heart disease, eye disease, is astronomical, and I 
think we could save a large amount of money of our Federal 
budget related to that.
    Mr. Cardenas. So diabetes-related illnesses like you just 
described I would imagine over lifetimes of tens and hundreds 
and millions of people would actually cost us trillions of 
dollars. Wouldn't it?
    Dr. Leffert. Well, I think, right now, as Chairman Pitts 
said in his opening statement, one in three dollars of the 
Medicare budget is spent in diabetes.
    Mr. Cardenas. So it is in the trillions.
    Dr. Leffert. It is a very, very significant amount of money 
that is being utilized in that regard.
    Mr. Cardenas. Thank you. I yield back.
    Mr. Pitts. The chair thanks the gentleman.
    And I now recognize the gentlelady from Indiana, Mrs. 
Brooks, 5 minutes for questions.
    Mrs. Brooks. Thank you, Mr. Chairman.
    In my home State of Indiana, over 750,000 Hoosiers have 
type 1 or type 2, and nearly 2 million of about 6 \1/2\ to 7 
million Hoosiers have prediabetes. And so we know it is taking 
an immense toll on our State and on the Nation's healthcare 
system. But yet you talked about some innovations, continuing 
glucose monitoring and artificial pancreases. Can you tell me, 
Dr. Leffert, how the new treatments, new devices that are on 
the horizon that can help bend the curve on both the incidence 
and the cost of the disease and help patients better manage 
their disease, how is this commission going to have a role in 
expediting patient access to these innovations?
    Dr. Leffert. So you told us about a very big problem. And 
we talked about that already. I think the issue for us in terms 
of getting the treatments to the patients is really one, to 
some extent, of making sure that the cost is available, that we 
have treatments that are cost-effective and not so expensive 
that patients can afford them, but in addition, the commission 
will allow us to utilize the resources of multiple different 
agencies working together to be able to first move these new 
technologies forward--the artificial pancreas being one of 
them, particularly in type 1 diabetes--and then also help us 
with prioritization of the ability to educate the physician 
workforce.
    We have 5,000 endocrinologists in the United States. That 
is not nearly enough to take care of diabetes. We have to 
educate and maintain that workforce at the primary care level 
and with all clinicians who are taking care of people with 
diabetes. So it is a tremendous opportunity here to utilize 
this commission to then focus our efforts at the level of the 
clinical physician and associated healthcare providers to be 
able to give these patients the best care.
    Mrs. Brooks. And is that being done? Because I am a huge 
believer in public/private partnerships, especially when it 
comes to commissions and government commission work, and so is 
involving the private sector clinicians on the commission the 
manner in which you are going to educate the agencies?
    Dr. Leffert. To some extent I think that is exactly the 
reason for our bill. This bill started within our organization 
in being interested in trying to make sure that the flow of 
dollars coming from the Federal Government was adequately being 
utilized to take care of patients. Our organization, the 
American Association of Clinical Endocrinologists, are the 
physicians on the ground who take care of patients on a daily 
basis. We have the ability to see, though, not all of the 
patients that have diabetes. We focus, to a large extent, our 
efforts on complicated patients. And we want to be able to 
translate our knowledge and information throughout the system. 
And so that allows us to give primary care physicians the 
information and education, and we need the Federal Government 
to be able to push that through to the whole sector of 
physicians who take care of patients.
    Mrs. Brooks. Thank you.
    Dr. Morrison, in your opening statement you talked about 
your concern, and there has been a lot of attention on opioids, 
and we just passed and had signed into law a very significant 
piece of opioid legislation. My involvement with that involved, 
actually, a task force focused on the prescribing practices of 
physicians. And can you please speak to the impact of that 
legislation or what your concern is? And we did add pain 
specialists to our task force because we want to ensure that 
patients who need opioids get them. But can you talk about that 
balance when we have an opioid epidemic happening in the 
country?
    Dr. Morrison. It is a challenge. And I recognize in many 
respects and I am envious I am not in your position about how 
to address it. But let me address a couple things.
    First of all, there are really two populations of patients 
to think about when we talk about pain. First, there are the 
people who live with chronic pain and pain is their only 
symptom. The much larger population, and the one that we are 
focusing on here, is the patient population with serious 
illness where pain is just one of a number of distressing 
symptoms, so, for most people, pain, breathlessness, fatigue, 
anxiety. And it is a constellation. And yet the prescribing 
practices that we need to teach are very similar within both 
populations. And I often hear about: Well, we are going to 
carve out people with cancer or people at the end of life, and 
they are not going to be part of the legislation. The reality 
is, though, that that is only a small fragment of those with 
serious illness, that people are going to live for many years 
with pain, distressing symptoms, and they are not going to be 
treated by specialists. They are going to be treated by primary 
care physicians, cancer doctors.
    And so what we need to do is we need an aggressive effort 
that is going to focus on teaching appropriate opioid 
prescribing. But, as importantly, it still strikes me as almost 
unimaginable that the drug we have for pain has not changed 
since the 1600s and that we need major investment in 
alternatives to a drug that we know has not only significant 
side effects but significant complications. So we need to teach 
appropriate opioid prescribing, appropriate recognition of the 
signs and symptoms of addiction, appropriate training into what 
are opioid-responsive pain syndromes and what are not, and we 
really need a critical investment in research to give us an 
alternative to opioids to treat pain and other symptoms.
    Mrs. Brooks. Thank you very much.
    I yield back.
    Mr. Pitts. The chair thanks the gentlelady and now 
recognizes the gentleman from New York, Mr. Engel, 5 minutes 
for questions.
    Mr. Engel. Thank you, Mr. Chairman and Mr. Green, for 
convening this morning hearing. I am so pleased to have an 
opportunity to discuss H.R. 3119, the Palliative Care and 
Hospice Education and Training Act, a bill that I introduced 
with Congressman Tom Reed, my colleague from New York. Every 
one of us has been touched by serious illness, whether we have 
been affected personally or stood by a loved one grappling with 
critical illness. We all know how physically and emotionally 
trying situations can be for all those involved. Palliative 
care aims to relieve these stresses.
    And thank you, Dr. Morrison, for everything you have been 
saying.
    I am from New York City as well. Palliative care 
complements efforts to treat or cure illness by focusing on 
patients' quality of life. Palliative care is appropriate for 
patients with serious illness, starting at the point of 
diagnosis through treatment and onward through hospice and the 
end of life. It involves capable communication with patients 
and their families to coordinate care, determine preference, 
and help with medical decisionmaking throughout the care 
continuum. Despite the benefits of palliative care, many 
Americans aren't aware of the supports available to them. In 
addition, there is a shortage of educated providers who can 
offer quality palliative care.
    So my bill, H.R. 3119, aims to remedy these issues. My bill 
would expand opportunities for training in palliative and 
hospice care and offer incentives to attract and retain 
providers. In addition, through existing programs, my bill 
would create a national campaign to educate patients, families, 
and health professionals about the benefits of palliative care. 
And, finally, H.R. 3191 would expand critically needed research 
on palliative care at the National Institutes of Health.
    I want to thank Chairman Upton, Chairman Pitts, Ranking 
Member Pallone, Ranking Member Green, for considering this 
important bill. And I would also like to thank the 200 Members, 
colleagues of House, who have cosponsored it, including several 
members of this committee. And I hope today's discussion, as it 
has been doing, will bring us one step closer to enacting this 
legislation and extraordinarily improvingpatients' quality of 
life.
    So let me, Dr. Morrison, thank you again for being here 
today. During your testimony, you noted that palliative care 
has the potential to bring about long-term savings for the 
healthcare system. Would you explain exactly how improved 
access to palliative care and, specifically, this bill would 
produce these savings? And have there been studies that 
actually conclude that there are real savings?
    Dr. Morrison. Before answering your question, Mr. Engel, 
thank you, on behalf of the patients and families that I take 
care of. I live just south of your district.
    Mr. Engel. Move on up.
    Dr. Morrison. Thank you for sponsoring this legislation. 
The question is, will palliative care provide savings to the 
healthcare system? And the answer is, yes, it will. When we 
look at the population that palliative care provides for, it is 
the 5 percent of Medicare beneficiaries that are accounting for 
over 50 percent of spending. And what palliative care does is 
it provides the added layer of support that reduces the 
misutilization for that population. How does it do that? First 
of all, it provides a safe environment at home, so in the 
setting after crisis in the middle of the night, on a weekend, 
or any time that is not Monday to Friday, 9 to 5, it provides 
the added layer of support at home so that somebody doesn't 
have to go to the emergency department for care. Our modern-day 
hospitals are designed for the 95 percent of people who don't 
need palliative care, and it is a mismatch, a tremendous 
mismatch for somebody with multiple chronic conditions, 
cognitive impairment, frailty, in our modern hospitals. And 
what palliative care teams do is they provide that added layer 
of support and make the hospitals friendly to people with 
chronic illness. They address pain and other symptoms. They sit 
with patients and families and identify: What are their values? 
What are their goals for care? What are they hoping to 
accomplish? And then we match treatments to meet those goals, 
and in doing so, we reduce unnecessary and unwanted healthcare 
utilization. And conversely to hospice, we do this at the same 
time as all other appropriate life-prolonging treatments.
    The question about cost and cost savings is an important 
one. We now have studies in general hospitals within the 
Medicaid population, within the Veterans Administration, all 
that demonstrate that when palliative care is provided at the 
same time as other appropriate treatments, costs are 
dramatically reduced, and importantly, quality of life goes up, 
and survival is exactly the same, if not longer.
    Mr. Engel. I think the point about survival certainly the 
same, if not longer, how do efforts to better patients' quality 
of life simultaneously enhance patients' clinical outcomes, you 
know, the tie-in between the two?
    Dr. Morrison. How does palliative care enhance clinical 
outcomes? We don't know for sure, but we have a very strong 
hypothesis why. First of all, we know that people living in 
pain, people who are depressed, people who are anxious, all 
contribute to increased medical complications. Pain is 
associated with delirium and confusion. Pain means that you 
can't get out of bed and walk, so you lose muscle mass. Pain 
prevents you from eating because you just don't feel hungry. 
Nausea does the same. So palliative care, by specifically 
focusing on distressing symptoms, allows people to get better.
    The best example I can give is my 35-year-old who had a 
very aggressive lymphoma but because of the palliative care she 
received, she made every single one of her chemotherapy 
appointments on time because she wasn't too nauseated, too 
sick, too distressed, and subsequently, she made every single 
radiotherapy on time and completed her treatment, so the 
palliative care she provided allowed her to complete her 
curative treatments.
    Mr. Engel. Thank you.
    Mr. Chairman, can I please ask unanimous consent to enter 
into the record statements in support of H.R. 3119 from the 
Alzheimer's Association, the American Academy of Hospice and 
Palliative Medicine, the National Hospice and Palliative Care 
Organization, and the Oncology Nursing Society, as well as a 
letter of support from the 45 organizations on record in 
support of the bill?
    And I want to thank Dr. Morrison for being the most 
eloquent speaker on this that I have heard. Thank you.
    Mr. Pitts. Without objection, so ordered.
    [The information appears at the conclusion of the hearing.]
    Mr. Engel. Thank you, Mr. Chairman.
    Mr. Pitts. The chair thanks the gentleman. That concludes 
the questions of the members of the committee present. We will 
have some followup questions, questions in writing. We will 
provide those to you. We ask that you please respond promptly.
    I remind members that they have 10 business days to submit 
questions for the record, so members should submit their 
questions by the close of business on Thursday, September 22.
    Very interesting, very important, very informative hearing. 
Thank you very much for your testimony.
    And, with that, this hearing stands adjourned.
    [Whereupon, at 12:05 p.m., the subcommittee was adjourned.]
    [Material submitted for inclusion in the record follows:]
    
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