[Congressional Record Volume 164, Number 200 (Wednesday, December 19, 2018)]
[House]
[Pages H10278-H10280]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




          CONGENITAL HEART FUTURES REAUTHORIZATION ACT OF 2017

  Mr. WALDEN. Mr. Speaker, I move to suspend the rules and concur in 
the Senate amendment to 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.
  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 ``Congenital Heart Futures 
     Reauthorization Act of 2017''.

     SEC. 2. NATIONAL CONGENITAL HEART DISEASE RESEARCH, 
                   SURVEILLANCE, AND AWARENESS.

       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, as appropriate--
       ``(1) enhance and expand research and data collection 
     efforts related to congenital heart disease, including to 
     study and track the epidemiology of congenital heart disease 
     to understand health outcomes for individuals with congenital 
     heart disease across all ages;
       ``(2) conduct activities to improve public awareness of, 
     and education related to, congenital heart disease, including 
     care of individuals with such disease; and
       ``(3) award grants to entities to undertake the activities 
     described in this section.
       ``(b) Activities.--
       ``(1) In general.--The Secretary shall carry out 
     activities, including, as appropriate, through a national 
     cohort study and a nationally-representative, population-
     based surveillance system, to improve the understanding of 
     the epidemiology of congenital heart disease in all age 
     groups, with particular attention to--
       ``(A) the incidence and prevalence of congenital heart 
     disease in the United States;
       ``(B) causation and risk factors associated with, and 
     natural history of, congenital heart disease;
       ``(C) health care utilization by individuals with 
     congenital heart disease;
       ``(D) demographic factors associated with congenital heart 
     disease, such as age, race, ethnicity, sex, and family 
     history of individuals who are diagnosed with the disease; 
     and
       ``(E) evidence-based practices related to care and 
     treatment for individuals with congenital heart disease.
       ``(2) Permissible considerations.--In carrying out the 
     activities under this section, the Secretary may, as 
     appropriate--
       ``(A) collect data on the health outcomes, including 
     behavioral and mental health outcomes, of a diverse 
     population of individuals of all ages with congenital heart 
     disease, such that analysis of the outcomes will inform 
     evidence-based practices for individuals with congenital 
     heart disease; and
       ``(B) consider health disparities among individuals with 
     congenital heart disease, which may include the consideration 
     of prenatal exposures.
       ``(c) Awareness Campaign.--The Secretary may carry out 
     awareness and educational activities related to congenital 
     heart disease in individuals of all ages, which may include 
     information for patients, family members, and health care 
     providers, on topics such as the prevalence of such disease, 
     the effect of such disease on individuals of all ages, and 
     the importance of long-term, specialized care for individuals 
     with such disease.
       ``(d) Public Access.--The Secretary shall ensure that, 
     subject to subsection (e), information collected under this 
     section is made available, as appropriate, to the public, 
     including researchers.
       ``(e) Patient Privacy.--The Secretary shall ensure that the 
     data and information collected under this section are made 
     available in a manner that, at a minimum, protects personal 
     privacy to the extent required by applicable Federal and 
     State law.
       ``(f) Eligibility for Grants.--To be eligible to receive a 
     grant under subsection (a)(3), an entity shall--
       ``(1) be a public or private nonprofit entity with 
     specialized experience in congenital heart disease; and
       ``(2) submit to the Secretary an application at such time, 
     in such manner, and containing such information as the 
     Secretary may require.
       ``(g) Authorization of Appropriations.--To carry out this 
     section, there are authorized to be appropriated $10,000,000 
     for each of fiscal years 2020 through 2024.''.

     SEC. 3. REPORT.

       Not later than 3 years after the date of enactment of the 
     Congenital Heart Futures Reauthorization Act of 2017, the 
     Secretary of Health and Human Services shall submit to the 
     Committee on Health, Education, Labor, and Pensions of the 
     Senate and the Committee on Energy and Commerce of the House 
     of Representatives a report summarizing any activities 
     carried out pursuant to section 399V-2 of the Public Health 
     Service Act (as amended by section 2), including planned 
     activities, and a summary of any research findings and 
     ongoing research efforts, gaps, and areas of greatest need 
     within the Department of Health and Human Services regarding 
     congenital heart disease in patients of all ages.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from 
Oregon (Mr. Walden) and the gentleman from New York (Mr. Tonko) each 
will control 20 minutes.
  The Chair recognizes the gentleman from Oregon.


                             General Leave

  Mr. WALDEN. 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 materials into the Record on the bill.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from Oregon?
  There was no objection.
  Mr. WALDEN. 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.
  Mr. Speaker, I would like to thank Representative Gus Bilirakis of 
Florida, who is a valued member of our Energy and Commerce Committee, 
for bringing this bill forward and for his passion on this very 
important issue. As one of the original authors of this legislation, he 
drove this reauthorization forward, and I am proud to stand in support 
of it once again with Mr. Bilirakis.
  As the parent of a child who died from a congenital heart defect, I 
know how much today's vote gives hope to the parents, infants, and 
adults across the country who live with the effects of congenital heart 
disease, the most common birth defect and the leading cause of birth 
defect-related infant mortality.
  This affects 40,000 families every year. Nearly 1 in every 100 babies 
is born with a congenital heart defect and roughly 25 percent of those 
will need heart surgery or other significant interventions to survive. 
Up to 200 each year do not survive. That is why this bill is so 
important.
  Originally passed in 2010, the Congenital Heart Futures Act expanded 
infrastructure at the CDC and increased research at NIH to better 
understand and treat patients with congenital heart defects.
  The reauthorization before us today ensures continued investment in 
that research, to identify the root causes of these defects and how to 
address them from birth to adulthood.
  Mr. Speaker, this House passed a version of this legislation earlier 
this year by a vote of 394-7, and the amended version we will vote on 
today passed the Senate unanimously.
  Mr. Speaker, I urge my colleagues to take this important step for 
families across the country and to support passage of this bill into 
law.
  Mr. Speaker, I reserve the balance of my time.
  Mr. TONKO. Mr. Speaker, I yield myself as much time as I may consume.
  Mr. Speaker, I rise in support of the Senate amendment to H.R. 1222, 
the

[[Page H10279]]

Congenital Heart Futures Reauthorization Act led by Congressman 
Bilirakis and Congressman Schiff.
  This legislation builds on the success of current efforts by the 
Centers for Disease Control and Prevention to improve and expand 
research, surveillance, and public outreach and education programs 
relating to congenital heart disease.
  Each year more than 40,000 babies are born in the United States with 
a congenital heart defect, and 1 million children and 1.4 million 
adults are currently living with congenital heart disorders.
  Even though congenital heart disease is the most common birth defect 
in America, there are still many unknowns surrounding the condition.
  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.
  Mr. Speaker, I therefore urge my colleagues to support this 
legislation, and I reserve the balance of my time.
  Mr. WALDEN. Mr. Speaker, I yield 2 minutes to the gentleman from 
Texas (Mr. Burgess), the chair of our Subcommittee on Health.
  Mr. BURGESS. Mr. Speaker, I thank the chairman for yielding me time 
this afternoon.
  Supporting H.R. 1222 is important. This is the Congenital Heart 
Futures Reauthorization Act. This important piece of legislation passed 
this House by a vote of 394-7 10 months ago. Our Senate colleagues 
passed an amended version of this bill by unanimous consent last week. 
Clearly there is a hearty consensus that this bill will make a positive 
impact on public health.
  According to the Centers for Disease Control and Prevention, 
congenital heart defects are the most common types of birth defects. 
Congenital heart disease affects roughly 1 percent of births in the 
United States. This legislation strengthens the ability of the 
Department of Health and Human Services to collect data related to 
congenital heart disease and to increase public awareness.
  The Secretary will be required to carry out activities through a 
national cohort study and a nationally representative, population-based 
surveillance system to further understand the epidemiology of 
congenital heart disease.
  This bill authorizes a total of $10 million each year for fiscal 
years 2020 through 2024 for the purpose of carrying out these 
activities.
  This bill does not focus on a particular subpopulation of 
individuals. It aims to improve data regarding incidence, prevalence, 
and outcomes among all age groups, races, ethnicities, and both sexes.
  The Secretary will also look at evidence-based practices for the 
treatment and care of individuals with congenital heart disease.
  Overall, the legislation is intended to improve our Nation's approach 
to caring for individuals with congenital heart disease.
  Mr. Speaker, I would like to thank our House champions on this 
legislation, Representatives Gus Bilirakis and Adam Schiff. They fought 
alongside Chairman  Greg Walden to get this bill across the finish 
line. And, of course, I want to thank the staff on the Subcommittee on 
Health and the full committee for bringing this to the floor last year.

  Mr. Speaker, I urge my colleagues to vote in favor of this 
legislation which will improve the lives of Americans suffering from 
this terrible disease.
  Mr. TONKO. Mr. Speaker, I reserve the balance of my time.
  Mr. WALDEN. Mr. Speaker, I yield as much time as he may consume to 
the gentleman from Florida (Mr. Bilirakis), who has worked so 
diligently and hard on this legislation.
  Mr. BILIRAKIS. Mr. Speaker, I thank the chairman for yielding me 
time. I appreciate all his help on this particular bill, and the 
committee's help as well. It has been a priority of ours.
  Mr. Speaker, I rise today in support of H.R. 1222, the Congenital 
Heart Futures Reauthorization Act as amended by the Senate, which will 
ensure continued investment in surveillance research to evaluate the 
lifelong needs of individuals with congenital heart defects, or CHD.
  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, and/
or ethnicity.
  In addition, the legislation emphasizes a 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.
  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.
  The road ahead may be scary and uncertain for any parent with a 
newborn who has CHD, but this bill gives hope to those coping with the 
diagnosis.
  Nearly 1 in 100 babies, Mr. Speaker, are born with CHD and more than 
5 percent will not live to see their first birthday. We have to fix 
that.
  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 who will be born in the next year with CHD; 
there is more work to be done.
  Mr. Speaker, I began on this journey almost 10 years ago with my good 
friend, then-Congressman Zack Space. So what we did is we first 
introduced the Congenital Heart Futures Act back in 2009.
  Last Congress, Congressman Schiff and I introduced the 
reauthorization of the original law. During this time, I met with a lot 
of patients with congenital heart defects, and I have been touched by 
their stories: people like Trey and Nicole Flynn, a young Florida 
couple who lost their son Holden while waiting for a heart transplant. 
He was 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.
  Lucas Iguina is a young man born with a complex congenital heart 
defect that essentially left him with half a heart. Despite having 
three open heart surgeries and countless doctor visits and medical 
procedures, Lucas has hopes and dreams. This bill ensures that the 
medical research will keep pace with his generation as they grow to be 
adults with this complex illness.
  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 the age of 11. He is about 16 years old now, 
Mr. Speaker, and he will live his life with a heightened sensitivity 
for his new heart.
  Nicholas B. was born with a complex heart disease and wasn't getting 
blood to the lower part of his body, requiring heart surgery when he 
was just 2 days old. He now is in the top of his class. This bill will 
ensure that his future remains bright as he navigates this chronic 
illness through adulthood. Who knows? Nicholas may be a congressman one 
day.

                              {time}  1515

  Abigail Adams, a very familiar name, a young Florida advocate with 
Down syndrome. Roughly half of the babies born with Down syndrome have 
a congenital heart defect. Abigail continues to advocate for 
individuals with Down syndrome.
  Then there is my friend, Dave. Dave was born with pulmonary stenosis, 
a condition where a heart valve will not open properly. He had 
emergency open-heart surgery when he was 2 days old, another surgery at 
the age of 10, and many hospital visits and procedures in the meantime. 
Today, he is a husband and a father of two, but he lives with atrial 
flutter.
  This bill will continue the surveillance program so we can collect 
data on children and adults with congenital heart problems.
  And Carolyn H., born with tetralogy of Fallot with pulmonary atresia, 
had

[[Page H10280]]

open-heart surgery when she was 10 years old to repair her heart, but 
she will need periodic surgical updates to replace the cadaver artery.
  This bill continues the NIH research into why these defects occur.
  These are just some of the patients that I have met over the years, 
Mr. Speaker. There are many, many, many, many more.
  Lastly, I want to thank some of the advocates who have worked with me 
on getting this legislation passed. I want to thank: Dave Peluso, David 
Kasnic, Amy Basken, Dr. Brad Marino, and Jessica Chenevert from the 
Pediatric Congenital Heart Association. Mark Roeder and Daniel Hile 
from the Adult Congenital Heart Association. Vince Randazzo, Sara Weir, 
and Nicole Patton from the National Down Syndrome Society; and, most 
importantly, our chairman for getting this through.
  Mr. Speaker, I urge swift passage of this lifesaving bill. Let's get 
it to the President as soon as possible.
  Mr. TONKO. Mr. Speaker, in closing, I echo my support for the Senate 
amendment to H.R. 1222, it is worthy of our support. We will continue 
to build on the research and education concerning birth defects, and, 
most importantly, we will enable individuals and families who live with 
birth defects to have more hope.
  Mr. Speaker, I yield back the balance of my time.
  Mr. WALDEN. Mr. Speaker, I yield myself such time as I may consume.
  Mr. Speaker, I thank the gentleman for his kind comments on this 
bipartisan legislation. I think it is another fine work product from 
the Energy and Commerce Committee in the area of healthcare, health 
research, and helping families cope with these terrible tragedies that 
befall us.
  The Committee on Energy and Commerce, as you know, Mr. Speaker, has 
done a lot of good work this cycle. I am especially proud of their work 
on opioids and opioid addiction. Their investigative report now is 
public--over 300 pages of work--looking at how Americans got hooked on 
opioids, who is responsible, and what we should do going forward.
  This legislation on H.R. 1222, the Congenital Heart Futures 
Reauthorization Act of 2017, is another very important piece of 
legislation. It too will save lives and bring hope to American 
families.
  Mr. Speaker, I urge my colleagues to support this legislation, and I 
yield back the balance of my time.
   Mr. BILIRAKIS. Mr. Speaker, I rise today in support of H.R. 1222, 
the Congenital Heart Futures Reauthorization Act, as amended by the 
Senate, which will ensure continued investment in surveillance research 
to evaluate the lifelong needs of individuals with congenital heart 
defects, or CHD.
   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. 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 children born with Down Syndrome have CHD.
   The road ahead may be scary and uncertain for any parent with a 
newborn who has CHD, but this bill gives hope to those coping with the 
diagnosis. Nearly 1 in 100 babies are born with CHD and more than five 
percent will not live to see their first birthday. 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 who will be born in the next year with CHD, there's more 
work to be done.
   Mr. Speaker, I began on this journey almost ten years ago when then-
Congressman Zack Space and I, first introduced the Congenital Heart 
Futures Act back in 2009. Last Congress, Congressman Schiff and I 
introduced the reauthorization of the original law.
   During this time, I've met a lot of patients with Congenital Heart 
Defects, and I've been touched by their story. 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.
   Lucas Iguina, a young man born with a complex congenital heart 
defect that essentially left him with half a heart. Despite having 
three open heart surgeries, and countless doctors' visits and medical 
procedures, Lucas has hopes and dreams. This bill ensures that the 
medical research will keep pace with his generation as they grow to be 
adults with this complex illness.
   Jackson Radandt, born with half a heart. He has Hypoplastic Left 
Heart Syndrome, which means the left side of his heart was 
underdeveloped. He depended on life-saving research to help his failing 
heart survive until his heart transplant at age 11. He's about sixteen 
now and will live his life with a heightened sensitivity for his new 
heart.
   Nicholas B., he was born with a complex heart disease and wasn't 
getting blood to the lower half of his body requiring heart surgery 
when he was just two days old. He's now in the top of his class and 
this bill will ensure that his future remains bright as he navigates 
this chronic illness through adulthood.
   Abigail Adams, a young Florida advocate with Down Syndrome. Roughly 
half of the babies born with Down Syndrome have a congenital heart 
defect. Abigail continues to advocate for individuals with Down 
Syndrome.
   My friend, Dave, born with pulmonary stenosis, a condition where a 
heart valve will not open properly. He had emergency open-heart surgery 
when he was 2 days old, another surgery at age 10, and many hospital 
visits and procedures in the meantime. Today, he is a husband and 
father, but lives with atrial flutter. This bill will continue the 
surveillance program so we can collect data on children and adults with 
congenital heart problems.
   And Carolyn H., born with tetralogy of Fallot with pulmonary 
atresia. She had open heart surgery when she was 10 days old to repair 
her heart, but she will need periodic surgical updates to replace the 
cadaver artery. This bill continues the NIH research into why these 
defects occur.
   These are just some of the patients that I've met over the years. 
Lastly, I want to thank some of the advocates that worked with me on 
getting this legislation passed.
   I want to thank David Kasnic, Amy Basken, Dr. Brad Marino, Jessica 
Chenevert, and Dave Peluso from the Pediatric Congenital Heart 
Association.
   I want to thank Mark Roeder, Danielle Hile, Johanna Gray, and Erika 
Miller from the Adult Congenital Heart Association.
   Additionally, I want to recognize Vince Randazzo, Sara Weir, and 
Nicole Patton, from the National Down Syndrome Society and all their 
support.
   I also want to thank many of the people that worked quietly behind 
the scenes, whose names are seldom mentioned, and who never get the 
recognition they deserve. People like Megan Perez, Kristin Seum, Shayne 
Woods, Katie Novaria, Adrianna Simonelli, Kristen Shatynski, Paul 
Edattel, Josh Trent, James Paluskiewicz, Peter Kielty, Karen Christian, 
Ryan Long, Mike Bloomquist, Ed Kim, Nolan Ahern, Ian Martorana, Macey 
Sevcik, and Elena Hernandez. This bill is a true team effort.
   I urge swift House passage of this life-saving bill.
  The SPEAKER pro tempore. The question is on the motion offered by the 
gentleman from Oregon (Mr. Walden) that the House suspend the rules and 
concur in the Senate amendment to the bill, H.R. 1222.
  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. MASSIE. 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.

                          ____________________