[Congressional Record Volume 168, Number 188 (Monday, December 5, 2022)]
[House]
[Pages H8755-H8756]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
CARDIOVASCULAR ADVANCES IN RESEARCH AND OPPORTUNITIES LEGACY ACT
Mr. PALLONE. Mr. Speaker, I move to suspend the rules and concur in
the Senate amendment to the bill (H.R. 1193) to amend title IV of the
Public Health Service Act to direct the Director of the National
Institutes of Health, in consultation with the Director of the National
Heart, Lung, and Blood Institute, to establish a program under which
the Director of the National Institutes of Health shall support or
conduct research on valvular heart disease, and for other purposes.
The Clerk read the title of the bill.
The text of the Senate amendment is as follows:
Senate amendment:
Strike all after the enacting clause and insert the
following:
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Cardiovascular Advances in
Research and Opportunities Legacy Act''.
SEC. 2. HHS VALVULAR HEART DISEASE ACTIVITIES.
(a) In General.--The Secretary of Health and Human Services
(referred to in this section as the ``Secretary'') shall, as
appropriate, continue activities related to research,
education, and awareness of valvular heart diseases.
(b) NIH Research Related to Valvular Heart Diseases.--
(1) In general.--The Director of the National Institutes of
Health, in consultation with the Director of the National
Heart, Lung, and Blood Institute, may support or conduct
research regarding valvular heart diseases.
(2) Support further research.--In order to improve
information on, and understanding of, causation and risk
factors for valvular heart diseases, research conducted or
supported under this subsection for such diseases may include
the following:
(A) Use of advanced technological imaging and other
relevant methods to generate data related to valvular heart
diseases.
(B) Assessing potential risk factors for sudden cardiac
arrest or sudden cardiac death from valvular heart diseases.
(C) Other activities, as appropriate, in order to improve
the availability of information on, and advance research
related to, valvular heart diseases.
(3) Mitral valve prolapse workshop.--Not later than 2 years
after the date of enactment of this Act, the Director of the
National Heart, Lung, and Blood Institute shall, as
appropriate, convene a workshop composed of subject matter
experts and stakeholders to identify research needs and
opportunities to develop recommendations for the
identification and treatment of individuals with mitral valve
prolapse, including such individuals who may be at risk for
sudden cardiac arrest or sudden cardiac death.
(c) Prevention Activities to Improve Awareness of Sudden
Cardiac Death as a Result of Valvular Heart Diseases.--
(1) In general.--The Secretary may carry out activities to
increase education and awareness of valvular heart diseases
in order to reduce the incidence of sudden cardiac death
caused by such diseases. The Secretary may--
(A) award grants or contracts to public or nonprofit
private entities to carry out activities under this
subsection; and
(B) directly, or through grants or contracts, provide
technical assistance with respect to such activities.
(2) Certain activities.--Upon availability of applicable
data, projects carried out under paragraph (1) may include--
(A) continuing activities at the Centers for Disease
Control and Prevention related to valvular heart diseases;
(B) improving the awareness of the public concerning any
risk factors for, the symptoms of, and the public health
impact of, valvular heart diseases; and
(C) enhancing public health data collection and improving
the quality of such data, as appropriate, regarding cardiac
arrests, including cardiac arrests that occur outside of the
hospital.
(3) Grant prioritization.--The Secretary may, in awarding
grants or entering into contracts pursuant to paragraph (1),
give priority to entities seeking to carry out projects for
populations most impacted by valvular heart diseases.
(4) Coordination of activities.--The Secretary shall, as
appropriate, ensure that activities under this section are
coordinated with other agencies and offices of the Department
of Health and Human Services that carry out activities
regarding valvular heart diseases.
(5) Best practices.--The Secretary shall, as applicable and
appropriate, identify and disseminate best practices for
relevant health care providers related to valvular heart
diseases.
(d) Authorization of Appropriations.--For purposes of
carrying out this section, there are authorized to be
appropriated $28,000,000 for each of fiscal years 2023
through 2027.
The SPEAKER pro tempore. Pursuant to the rule, the gentleman from New
Jersey (Mr. Pallone) and the gentleman from Pennsylvania (Mr. Joyce)
each will control 20 minutes.
The Chair recognizes the gentleman from New Jersey.
General Leave
Mr. PALLONE. Mr. Speaker, I ask unanimous consent that all Members
have 5 legislative days in which to revise and extend their remarks and
include extraneous material on H.R. 1193.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from New Jersey?
There was no objection.
Mr. PALLONE. Mr. Speaker, I yield myself such time as I may consume.
Mr. Speaker, 1 year ago, the House passed the CAROL Act by voice
vote. I am pleased the Senate finally considered the legislation and
worked to keep it in a bipartisan bill.
Valvular heart disease is a growing issue in our country. It is a
condition where one of the heart's four valves is damaged and does not
regulate blood properly. Nearly 25,000 Americans die each year from
complications caused by valvular heart disease. Yet, we do not know
much about it. This bill will bring us closer to finding answers.
The CAROL Act expands research on valvular heart disease at the
National Heart, Lung, and Blood Institute with the goal of generating
data and assessing potential risk factors associated with valvular
heart disease. This bill convenes a workshop of experts to collaborate
and develop recommendations for the identification and treatment of
individuals who are at risk of sudden cardiac death caused by valvular
heart disease. The bill also supports education efforts at the Centers
for Disease Control and Prevention to increase awareness of valvular
heart disease and reduce the risk of sudden cardiac death.
I commend our colleague, Representative Barr, for leading this
legislation in honor of his late wife, Carol, who passed unexpectedly
due to an underlying valvular heart disease condition. I hope that this
legislation will help avoid similar tragedies for other families across
the Nation.
Mr. Speaker, I urge my colleagues to support this legislation and
join us in honoring the life of Carol Barr.
Mr. Speaker, I reserve the balance of my time.
Mr. JOYCE of Pennsylvania. Mr. Speaker, I yield myself such time as I
may consume.
Mr. Speaker, I rise today in support of H.R. 1193, the Cardiovascular
Advances and Opportunities Legacy Act, or the CAROL Act. I am excited
that we are going to pass this legislation and send it to the
President's desk.
Our friend and colleague, Representative Andy Barr, introduced the
CAROL Act to honor his late wife who tragically passed away from an
underlying condition known as mitral valve prolapse.
The bill authorizes grants administered by the National Heart, Lung,
and Blood Institute to support research on valvular heart disease and
convene subject matter experts to identify research opportunities to
develop treatment guidelines for patients with valvular heart diseases.
It also instructs the CDC to increase public awareness regarding
symptoms of valvular heart disease and effective strategies for
preventing sudden cardiac death.
{time} 1615
Heart disease continues to be the leading cause of death for most
demographic groups in the United States. Over 600,000 Americans die
from heart disease each year. This is equal to one person every 36
seconds.
We know that early action is critical to surviving a heart condition.
People need to know warning signs and symptoms, so we must identify the
gaps in education and information sharing.
This bill also has been a model in terms of how legislation should be
done. It was the subject of a hearing at the Energy and Commerce
Committee, was voted on by the subcommittee and full committee, and
then passed by the entire House. The Senate then also moved it through
the committee process and made some improvements to the legislation in
consultation with
[[Page H8756]]
House sponsors and the Energy and Commerce Committee. Last week, the
Senate voted to send the updated legislation back here to the House.
This regular order process only improved this important legislation,
and I urge all of my colleagues to support this bill.
Mr. Speaker, I reserve the balance of my time.
Mr. PALLONE. Mr. Speaker, I reserve the balance of my time.
Mr. JOYCE of Pennsylvania. Mr. Speaker, I yield such time as he may
consume to my colleague from Kentucky (Mr. Barr).
Mr. BARR. Mr. Speaker, I thank my colleagues for their support of
this legislation.
I rise today in support of an issue obviously that is very near and
dear to my heart, our legislation, the Cardiovascular Advances in
Research and Opportunities Legacy Act, or the CAROL Act, named after my
late wife, Carol Leavell Barr.
Mr. Speaker, my life changed forever, and the lives of my daughters
and Carol's family and friends' lives changed forever, when we lost
her, my best friend, to sudden cardiac arrest on June 16, 2020. She was
only 39 years old.
At a young age, Carol was diagnosed with an underlying condition
called mitral valve prolapse, or floppy valve syndrome, a typically
benign condition that results in sudden cardiac death in only 0.2
percent of cases.
We were told that this was no big deal, so there was no cause for
alarm for most of her adult life. We knew about her condition, but it
was not cause for alarm. Even her doctors were not alarmed by the
condition because of the very low incidence of sudden cardiac death
with this.
The end of her life didn't define her life. I want to just share a
little bit. I mean, obviously, this is a picture of her. She was
beautiful, inside and out. She had an amazing smile. She was smart. She
was fun. She was accomplished professionally.
Ironically, she was in pharmaceutical sales, and she was in the
cardiovascular space. Her motivation and willingness to give back to
the American Heart Association and charity, a lot of that had to do
with the fact that she was aware that she had this underlying
preexisting heart condition.
She was an organized list maker. She would always say: Let's just get
it done.
She loved to read, travel, and cook for her family.
She loved Kentucky. She loved the Kentucky Derby, horses, and her
beloved Wildcats.
She loved her country, and she loved her family. She loved her
friends and especially our girls, and that was her gift: motherhood.
Motherhood was her gift.
She was a selfless giver to them, to me, to all of her friends, and
we have gratitude in our grief. We have gratitude for the 39 wonderful
years we did have with her.
We miss her terribly, but we are grateful and blessed that we now
have this to extend and amplify her legacy, this bill that is going to
help save lives, so her selfless giving goes on. I thank all my
colleagues for helping advance this.
Since this was such a rare situation where someone would die of MVP,
what were the factors that put Carol in the 0.2 percent versus the 99.8
percent category? That was the question that I had after her passing.
In my discussions with top cardiologists, medical experts,
researchers, and advocates following her passing, I learned the extent
to which the medical community seriously lacked the answers to that
critical question.
Sadly, over 25,000 of our fellow American citizens die each year from
heart valve disease, primarily due to underdiagnosis and undertreatment
of the condition, which was obviously the case with our Carol.
Inspired by her extraordinary life, my family and I decided to take
action and introduce the CAROL Act to better equip our medical
community with the resources needed to develop predictive models,
inform communities, and possibly save the lives of other loved ones.
Specifically, the CAROL Act authorizes a grant program administered
by the National Heart, Lung, and Blood Institute to support research on
valvular heart disease, including MVP.
This legislation marshals the full power of 21st century medical
innovation and encourages the utilization of technical imaging and
precision medicine to generate data on individuals with valvular heart
disease.
It is through this research, Mr. Speaker, that we can help identify
Americans like Carol at high risk of sudden cardiac death from valvular
heart disease and develop prediction models for high-risk patients,
enabling interventions and treatment plans to keep these patients
healthy throughout their lives.
Additionally, the CAROL Act will instruct the Centers for Disease
Control and Prevention to increase public awareness regarding the
symptoms of valvular heart disease and effective strategies for
preventing sudden cardiac death.
Mr. Speaker, I am grateful and honored that the CAROL Act earned the
bipartisan cosponsorship of 180 Members of this body.
I am grateful for so many others. I am grateful for Congresswoman
Kathleen Rice from New York, who I worked with in a bipartisan way on
the Energy and Commerce Committee. Obviously, Dr. Joyce was a powerful
spokesperson for this legislation in committee. I appreciate Chairman
Pallone's partnership in this. Ranking Member Cathy McMorris Rodgers
and my colleague from Kentucky who was friends with Carol, Brett
Guthrie, they really contributed mightily to this.
My friends Kevin McCarthy, Steve Scalise, Brad Wenstrup, and Bill
Huizenga, they really helped us push it forward.
I thank Steny Hoyer, who himself lost his wife at a young age, and I
think he really helped push this forward.
In the Senate, Leader Mitch McConnell obviously knew Carol very well,
and his wife, Elaine Chao, was good friends with Carol. He was really
instrumental in pushing it through the Senate.
Arizona Senator Kyrsten Sinema lost a sister to a condition similar
to Carol's, and she was our lead Democrat in the Senate. I just saw
Kyrsten in the airport. She gave me a big hug to celebrate this great
day.
Finally, I thank Claire Osborn of my staff, who worked tirelessly on
this bill and made it a personal cause of hers. We would not be here
today without her tireless efforts.
The American Heart Association, the American College of Cardiology,
WomenHeart, Edwards Lifesciences, and over 20 additional medical groups
that supported our bill, I thank them for their advocacy.
Carol's greatest legacy will always be our two beautiful daughters,
Eleanor and Mary Clay. However, today, I hope that my colleagues in the
House will help me enshrine her legacy in a way that helps others avert
the tragedy that has profoundly impacted our family.
We thank all of our colleagues for helping advance this legislation,
and we are so grateful for the continued extraordinary legacy of Carol
Barr.
Mr. Speaker, I urge my colleagues to support this bill.
Mr. JOYCE of Pennsylvania. Mr. Speaker, I yield back the balance of
my time.
Mr. PALLONE. Mr. Speaker, I urge all of our colleagues to support
this bill, the legacy of Carol Barr, which will go to the President
once it is adopted today.
Mr. Speaker, I yield back the balance of my time.
The SPEAKER pro tempore. The question is on the motion offered by the
gentleman from New Jersey (Mr. Pallone) that the House suspend the
rules and concur in the Senate amendment to the bill, H.R. 1193.
The question was taken; and (two-thirds being in the affirmative) the
rules were suspended and the Senate amendment was concurred in.
A motion to reconsider was laid on the table.
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