Congenital Heart Futures Reauthorization Act of 2017
Floor Speech
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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.
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 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.
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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.
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