[Congressional Record Volume 164, Number 34 (Monday, February 26, 2018)]
[House]
[Pages H1238-H1240]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
CONGENITAL HEART FUTURES REAUTHORIZATION ACT OF 2017
Mr. BURGESS. Mr. Speaker, I move to suspend the rules and pass the
bill (H.R. 1222) to amend the Public Health Service Act to coordinate
Federal congenital heart disease research efforts and to improve public
education and awareness of congenital heart disease, and for other
purposes, as amended.
The Clerk read the title of the bill.
The text of the bill is as follows:
H.R. 1222
Be it enacted by the Senate and House of Representatives of
the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Congenital Heart Futures
Reauthorization Act of 2017''.
SEC. 2. NATIONAL CONGENITAL HEART DISEASE SURVEILLANCE
SYSTEM.
Section 399V-2 of the Public Health Service Act (42 U.S.C.
280g-13) is amended to read as follows:
``SEC. 399V-2. NATIONAL CONGENITAL HEART DISEASE RESEARCH,
SURVEILLANCE, AND AWARENESS.
``(a) In General.--The Secretary shall--
``(1) enhance and expand research and surveillance
infrastructure to study and track the epidemiology of
congenital heart disease (in this section referred to as
`CHD'); and
``(2) award grants to eligible entities to undertake the
activities described in this section.
``(b) National Congenital Heart Disease Study.--
``(1) In general.--The Secretary shall plan, develop,
implement, and submit one or more reports to the Congress on
a study to improve understanding of the epidemiology of CHD
across the lifespan, from birth to adulthood, with particular
interest in the following:
``(A) Health care utilization of those affected by CHD.
``(B) Demographic factors associated with CHD, such as age,
race, ethnicity, gender, and family history of individuals
who are diagnosed with the disease.
``(C) Outcome measures, such that analysis of the outcome
measures will allow derivation of
[[Page H1239]]
evidence-based best practices and guidelines for CHD
patients.
``(2) Permissible considerations.--The study under this
subsection may--
``(A) gather data on the health outcomes of a diverse
population of those affected by CHD;
``(B) consider health disparities among those affected by
CHD, which may include the consideration of prenatal
exposures; and
``(C) incorporate behavioral, emotional, and educational
outcomes of those affected by CHD.
``(3) Public access.--Data generated from the study under
this subsection shall be made available--
``(A) for purposes of CHD research, subject to appropriate
protections of personal privacy, including protections
required by paragraph (4); and
``(B) to the public, subject to paragraph (4) and with
appropriate exceptions for protection of personal privacy.
``(4) Patient privacy.--The Secretary shall ensure that the
study under this subsection is carried out in a manner that
complies with the requirements applicable to a covered entity
under the regulations promulgated pursuant to section 264(c)
of the Health Insurance Portability and Accountability Act of
1996.
``(c) Eligibility for Grants.--To be eligible to receive a
grant under subsection (a)(2), an entity shall--
``(1) be a public or private nonprofit entity with
specialized experience in CHD; and
``(2) submit to the Secretary an application at such time,
in such manner, and containing such information as the
Secretary may require.
``(d) Authorization of Appropriations.--To carry out this
section, there is authorized to be appropriated $4,000,000
for each of fiscal years 2018 through 2022.''.
SEC. 3. CONGENITAL HEART DISEASE RESEARCH.
Section 425 of the Public Health Service Act (42 U.S.C.
285b-8) is amended to read as follows:
``SEC. 425. CONGENITAL HEART DISEASE.
``(a) In General.--The Director of the Institute may
expand, intensify, and coordinate research and related
activities of the Institute with respect to congenital heart
disease, which may include congenital heart disease research
with respect to--
``(1) causation of congenital heart disease, including
genetic causes;
``(2) long-term outcomes in individuals with congenital
heart disease, including infants, children, teenagers,
adults, and elderly individuals;
``(3) diagnosis, treatment, and prevention;
``(4) studies using longitudinal data and retrospective
analysis to identify effective treatments and outcomes for
individuals with congenital heart disease; and
``(5) identifying barriers to lifelong care for individuals
with congenital heart disease.
``(b) Coordination of Research Activities.--The Director of
the Institute may coordinate research efforts related to
congenital heart disease among multiple research institutions
and may develop research networks.
``(c) Minority and Medically Underserved Communities.--In
carrying out the activities described in this section, the
Director of the Institute shall consider the application of
such research and other activities to minority and medically
underserved communities.
``(d) Report From NIH.--Not later than one year after the
date of the enactment of the Congenital Heart Futures
Reauthorization Act of 2017, the Director of NIH, acting
through the Director of the Institute, shall provide a report
to Congress--
``(1) outlining the ongoing research efforts of the
National Institutes of Health regarding congenital heart
disease; and
``(2) identifying--
``(A) future plans for research regarding congenital heart
disease; and
``(B) the areas of greatest need for such research.''.
The SPEAKER pro tempore. Pursuant to the rule, the gentleman from
Texas (Mr. Burgess) and the gentleman from Texas (Mr. Gene Green) each
will control 20 minutes.
The Chair recognizes the gentleman from Texas (Mr. Burgess).
General Leave
Mr. BURGESS. Mr. Speaker, I ask unanimous consent that all Members
may have 5 legislative days in which to revise and extend their remarks
and insert extraneous material in the Record on the bill.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from Texas?
There was no objection.
Mr. BURGESS. Mr. Speaker, I yield myself such time as I may consume.
Mr. Speaker, I rise today in support of H.R. 1222, the Congenital
Heart Futures Reauthorization Act, introduced by my Energy and Commerce
colleague, Representative Gus Bilirakis from Florida.
This important initiative will enhance current Federal efforts
addressing congenital heart disease, which is the most common birth
defect and leading cause of mortality in infants. This bipartisan
legislation enhances research and surveillance at the Centers for
Disease Control and Prevention, awards grants to further study
congenital heart disease, and directs the National Institutes of Health
to report on their current research efforts in this space.
Mr. Speaker, I reserve the balance of my time.
Mr. GENE GREEN of Texas. Mr. Speaker, I yield myself such time as I
may consume.
Mr. Speaker, I rise in support of H.R. 1222, the Congenital Heart
Futures Reauthorization Act, led by Congressman Bilirakis and
Congressman Schiff from California.
This legislation reauthorizes the Congenital Heart Futures Act, which
was enacted in 2010, as part of the Affordable Care Act.
The Congenital Heart Futures Reauthorization Act builds on the
success of current efforts by the Centers for Disease Control and
Prevention to improve and expand research, monitoring, and public
outreach and educational programs relating to congenital heart disease.
This bill requires the National Institutes of Health to issue a
report outlining current and future research plans with respect to
congenital heart disease.
Each year, more than 40,000 babies are born in the United States with
a congenital heart defect. One million children and 1.4 million adults
are currently living with congenital heart disorders. Individuals
living with a congenital heart disease often require specialized care
and remain at risk of disability or premature death throughout their
life.
More research and surveillance is needed to improve our knowledge of
why congenital heart defects develop and how they can be effectively
treated. This legislation will help expand our understanding of
congenital heart disease across the lifespan and has the potential to
improve the lives of the millions of children and adults living with
congenital heart disease in America.
Mr. Speaker, I urge my colleagues to support this measure, and I
reserve the balance of my time.
Mr. BURGESS. Mr. Speaker, I yield 5 minutes to the gentleman from
Florida (Mr. Bilirakis), the principal author of this bill.
Mr. BILIRAKIS. Mr. Speaker, I rise today in support of H.R. 1222, the
Congenital Heart Futures Reauthorization Act, which will reauthorize
and ensure continued investment in surveillance research to assess the
lifelong needs of individuals with congenital heart defects, or CHDs.
These surveillance efforts will help improve our understanding of CHD
across the lifespan, from birth to adulthood. This research will help
us learn more about demographic factors such as age, race, gender, or
ethnicity.
In addition, the legislation emphasizes the need for continued
biomedical research at the National Institutes of Health on the
diagnosis, treatment, and prevention of CHD.
NIH will further research into the causes of congenital heart
defects, including genetic causes, and study long-term outcomes in
individuals with CHD of all ages. Also, NIH may study data to identify
effective treatments and outcomes and identify barriers to lifelong
care for individuals with congenital heart defects
CHD is the most common birth defect and the leading cause of birth
defect-related infant mortality. For the Down syndrome community, about
half of the children born with Down syndrome have CHD. It is a true
public health issue and, as late-night show host Jimmy Kimmel noted, it
does not discriminate by race, gender, or socioeconomic status.
The road ahead may be scary and uncertain for any parent with a
newborn who has CHD, but this bill helps give hope to those coping with
the diagnosis. Nearly 1 in 100 babies are born with CHD, and more than
5 percent will not live to see their first birthday, unfortunately. We
have to change that.
Even for those who receive successful intervention, it is not a cure.
We have to change that.
Children and adults born with CHD require ongoing, costly,
specialized cardiac care and face a lifelong risk of permanent
disability and premature death. We must change that.
As a result, healthcare utilization among the CHD population is
significantly higher than the general population. It is estimated that,
compared to their peers, the medical costs for individuals with
congenital heart defects are 10 to 20 times greater.
Hospitalization costs for pediatric patients alone total more than
$5.6 billion each year, which is 15 percent of
[[Page H1240]]
all hospitalization costs for patients 20 years of age and younger.
Despite its prevalence and significance, there are still gaps in
research and standards of care for CHD patients. But for the sake of
the estimated 40,000 babies, Mr. Speaker, who will be born in the next
year with CHD, there is more work to be done.
Mr. Speaker, I began this journey almost 10 years ago, when then-
Congressman Zack Space and I first introduced the Congenital Heart
Futures Act. Last Congress, Congressman Schiff and I reintroduced the
reauthorization of the original bill. During that time, I met a lot of
patients with congenital heart defects along the way, and I have been
touched by their stories.
There are people like Trey and Nicole Flynn, a young Floridian couple
who lost their son, Holden, while waiting for a heart transplant. He
was only 2 years old.
This bill supports the essential research necessary to make sure
another family doesn't have to leave the hospital without their child
in their arms.
There is also Lucas Iguina, a young man born with a complex
congenital heart disease that essentially left him with half a heart.
{time} 1730
Despite having three open-heart surgeries, Mr. Speaker, and countless
doctor visits and medical procedures, Lucas has hopes and dreams like
every other child. This bill ensures that the medical research will
keep pace with his generation as they grow to be adults.
The SPEAKER pro tempore. The time of the gentleman has expired.
Mr. BURGESS. Mr. Speaker, I yield an additional 1 minute to the
gentleman from Florida.
Mr. BILIRAKIS. Jackson Radandt, born with half a heart, has
hypoplastic left heart syndrome, which means the left side of his heart
was underdeveloped. He depended on lifesaving research to help his
failing heart survive until his heart transplant at age 11. He is a
teenager now and will live his life with a heightened sensitivity for
his new heart.
Nicholas Basken was born with complex heart disease and wasn't
getting blood to the lower half of his body, requiring heart surgery
when he was just 2 days old. He is now at the top of his class, and
this bill will ensure that his future remains bright as he navigates
this chronic illness throughout his adulthood.
Abigail Adams is a young Florida advocate, whom I will meet again
tomorrow, with Down syndrome. Roughly half of the babies born with Down
syndrome, Mr. Speaker, have a congenital heart defect. Abigail
continues to advocate for individuals with Down syndrome.
The SPEAKER pro tempore. The time of the gentleman has again expired.
Mr. BURGESS. Mr. Speaker, I yield an additional 30 seconds to the
gentleman from Florida.
Mr. BILIRAKIS. My friend, David Peluso, was born with pulmonary
stenosis, a condition where the pulmonary valve will not open properly.
He had surgery, again, emergency open-heart surgery, at 2 days old,
another corrective surgery at age 10, and many hospital visits and
procedures in the meantime.
Today, again, we are giving these children hope. Today, he is a
husband and a father to two kids, trying to live a normal life with
atrial flutter that requires additional surgeries. This bill will
continue the surveillance program so we can collect data on children
and adults with congenital heart problems.
I can go on and on, Mr. Speaker. Thank you so very much, and let's
pass this great bill for our children and give them hope.
Mr. GENE GREEN of Texas. Mr. Speaker, I have no other speakers.
I want to thank, also, the cosponsors of the bill, both Congressman
Schiff and a member of our committee, Congressman Bilirakis, for
introducing this reauthorization bill, and I yield back the balance of
my time.
Mr. BURGESS. Mr. Speaker, I yield 1 minute to the gentleman from
Georgia (Mr. Carter).
Mr. CARTER of Georgia. Mr. Speaker, I thank the gentleman for
yielding.
Mr. Speaker, I rise today in support of the Congenital Heart Futures
Reauthorization Act. This legislation was introduced by the gentleman
from Florida (Mr. Bilirakis), a colleague and good friend, to address a
very serious issue.
Congenital heart disease is the leading cause of infant mortality and
is the most common birth defect found in young children. These children
grow up facing a wealth of health issues that will have a tremendous
impact on them for the rest of their lives. They often require
specialized care, including cardiac care, and are subjected to a
lifetime of risk for disability or premature death.
This legislation enhances research and surveillance at the CDC to
ensure that our medical community and the research to support their
efforts are the best available for treatment. It also establishes
grants to further study congenital heart disease so that we can better
combat this disease and the harm it causes in so many people's lives.
Mr. Speaker, this is a terrible disease that leaves people never
knowing when it could strike. Like other diseases, we need to better
understand how it develops and impacts people so that we have a better
chance of fighting it and saving lives.
I thank my colleagues on both sides of the aisle for getting this
legislation passed through the Energy and Commerce Committee, and I
support its passage.
Mr. BURGESS. Mr. Speaker, having no further speakers, I yield back
the balance of my time.
The SPEAKER pro tempore. The question is on the motion offered by the
gentleman from Texas (Mr. Burgess) that the House suspend the rules and
pass the bill, H.R. 1222, as amended.
The question was taken.
The SPEAKER pro tempore. In the opinion of the Chair, two-thirds
being in the affirmative, the ayes have it.
Mr. BURGESS. Mr. Speaker, on that I demand the yeas and nays.
The yeas and nays were ordered.
The SPEAKER pro tempore. Pursuant to clause 8 of rule XX, further
proceedings on this motion will be postponed.
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