[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.

                          ____________________