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