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Fighting CHD Together

February 2, 2016
Bilirakis Blog

This week, I met with several patients and more than 140 advocates, representing more than 10 organizations, during the annual Congenital Heart Legislative Conference. These leaders are working to improve and prolong the lives of those living with a congenital heart defect (CHD).

Florida natives participating in the Congenital Heart Legislative Conference.

Leaders from the Congential Heart Association, Adult Congenital Heart Association, and the Children's Heart Foundation came by my DC office to further discuss our work to address CHD.

This issue has been a priority of mine for at least six years, when I co-founded the Congressional Congenital Heart Caucus. Working together, we passed the Congenital Heart Futures Act to encourage research into congenital heart defects at the National Institutes of Health and the Centers for Disease Control.

Since then, there have been great strides made in the research and treatment of congenital heart defects. As a result of the work at NIH and CDC, we are closer to understanding the prevalence of congenital heart defects, the demographics of those affected, and the ways we can improve our standards of congenital heart care.

Congress now needs to act to enable the CDC and NIH to build upon existing programs and focus on successful activities addressing this public health need.

I am continuing my work on this important issue – last year, I introduced the Congenital Heart Futures Reauthorization Act.

This bipartisan bill expands congenital heart defect research, raises awareness of the importance of specialized care, and ensures that the important research underway at NIH continues. Each year in our country nearly 40,000 babies are born with a congenital heart defect, this bill helps give hope to those coping with this diagnosis.

I was honored to receive this Conference’s “Legislative Champion of the Year Award” for my work on this legislation and my continued efforts to combat CHD. I could not have introduced this important bill without the help of so many patients, families, and advocates who have met with me over the years to discuss ways to address congenital heart defects. This award truly belongs to them. 

Four-year-old Ava was diagnosed shortly after birth and joined advocates in DC to encourage research for CHD.

Lachlan is bravely battling a Transposition of the Great Arteries (a congenital heart defect) at just eleven months. His mother worked in the cardiac community when he was diagnosed and actively sought help to better understand CHD.

I will continue to work on getting this legislation through the House and Senate, and to the President’s desk for signature. I am proud to continue working on this issue for the millions of American families who need our help.