[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.
____________________