Congenital Heart Futures Reauthorization Act of 2017

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.

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.

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. Speaker, I yield 2 minutes to the gentleman from Texas (Mr. Burgess), the chair of our Subcommittee on Health.

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. 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.

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.

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

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.

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.

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.

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. Speaker, I rise today regarding missed votes due to a mild medical issue. Had I been present for roll call vote number 81, on Motion to Suspend the Rules and Pass, as Amended, H.R. 1222 the Congenital Heart Futures Reauthorization Act of 2017 I would have voted ``yay.'' Had I been present for roll call vote number 82, on Motion to Suspend the Rules and Pass, as Amended, H.R. 2422 the Action for Dental Health Act of 2017 I would have voted ``yay.'' Had I been present for roll call vote number 83, on the Table Appeal of the Ruling of the Chair, I would have voted ``yay.'' Had I been present for roll call vote number 84, On Ordering the Previous Question, on H. RES. 748 Providing for consideration of the bill H.R. 1865, the Allow States and Victims to Fight Online Sex Trafficking Act of 2017, I would have voted ``yay.'' Had I been present for roll call vote number 85, On Agreeing to the Resolution to H. RES. 748 Providing for consideration of the bill H.R. 1865, the Allow States and Victims to Fight Online Sex Trafficking Act of 2017, I would have voted ``yay.'' Had I been present for roll call vote number 86, On Ordering the Previous Question, to H. RES. 747, Providing for consideration of the bill H.R. 4296 to place requirements on operational risk capital requirements for banking organizations established by an appropriate Federal banking agency, and providing for consideration of the bill H.R. 4607 the Comprehensive Regulatory Review Act, I would have voted ``yay.'' Had I been present for roll call vote number 87, On Agreeing to the Resolution, to H. RES. 747, Providing for consideration of the bill H.R. 4296 to place requirements on operational risk capital requirements for banking organizations established by an appropriate Federal banking agency, and providing for consideration of the bill H.R. 4607 the Comprehensive Regulatory Review Act, I would have voted ``yay.'' Had I been present for roll call vote number 88, On Motion to Recommit with Instructions, H.R. 4296, To place requirements on operational risk capital requirements for banking organizations established by an appropriate Federal banking agency, I would have voted ``nay.'' Had I been present for roll call vote number 89, On Passage to H.R. 4296 To place requirements on operational risk capital requirements for banking organizations established by an appropriate Federal banking agency, I would have voted ``yay.'' Had I been present for roll call vote number 90, On Agreeing to the Amendment to H.R. 1865 Mimi Walters of California Amendment No. 2, I would have voted ``yay.'' Had I been present for roll call vote number 91, On Passage of H.R. 1865 Allow States and Victims to Fight Online Sex Trafficking Act, I would have voted ``yay.''

Mr. Speaker, on Monday, February 26, 2018, and Tuesday, February 27, 2018 I was unable to vote on any legislative measures. Had I been present, I would have voted the following:

(Roll no. 81) On passage of H.R. 1222--Congenital Heart Futures Reauthorization Act, had I been present I would have voted yes;

(Roll no. 82) On passage of H.R. 2422--Action for Dental Health Act, had I been present I would have voted yes;

(Roll no. 83) On motion to table the appeal of the PERSONAL EXPLANATION ruling of the chair, had I been present I would have voted yes;

(Roll no. 84) On ordering the previous question providing for consideration of 1865--Allow States and Victims to Fight Online Sex Trafficking Act of 2017, had I been present I would have voted yes;

(Roll no. 85) On adoption of the rule providing for consideration of H.R. 1865--Allow States and Victims to Fight Online Sex Trafficking Act of 2017, had I been present I would have voted yes;

(Roll no. 86) On ordering the previous question providing for consideration of H.R. 4296--to place requirements on operational risk capital requirements for banking organizations established by an appropriate Federal banking agency and H.R. 4607--the Comprehensive Regulatory Review Act, had I been present I would have voted yes;

(Roll no. 87) On adoption of the combined rule providing for consideration of H.R. 4296--to place requirements on operational risk capital requirements for banking organizations established by an appropriate Federal banking agency and H.R. 4607--the Comprehensive Regulatory Review Act, had I been present I would have voted yes;

(Roll no. 88) On democrat motion to recommit, had I been present I would have voted no;

(Roll no. 89) On passage of H.R. 4296--to place requirements on operational risk capital requirements for banking organizations established by an appropriate Federal banking agency, had I been present I would have voted yes;

(Roll no. 90) On Walters of California Amendment to H.R. 1865--Allow States and Victims to Fight Online Sex Trafficking Act, had I been present I would have voted yes; and

(Roll no. 91) On passage of H.R. 1865--Allow States and Victims to Fight Online Sex Trafficking Act, had I been present I would have voted yes.