Durbin, Casey Introduce Senate Bill to Increase Congenital Heart Defect Research

[WASHINGTON, D.C.] – U.S. Senators Dick Durbin (D-IL) and Bob Casey (D-PA) today introduced legislation to reauthorize Durbin’s Congenital Heart Futures Act, which expired earlier this year.  The bipartisan legislation – introduced in the House today by Representatives Gus Bilirakis (R-FL) and Adam Schiff (D-CA) – raises awareness of the continuing impact congenital heart defects have throughout patients’ lifespans, promotes more research at NIH, and encourages the development of lifelong, specialized care for patients with a congenital heart defect.


There are approximately 35 types of congenital heart defects, which occur when the structures of the heart are malformed, missing or in the wrong place during development.  Heart defects are the most common and most deadly form of birth defects, affecting nearly 1% of births (approximately 40,000 a year). 


“Every 15 minutes in America, a baby is born with a congenital heart defect.  Many of these congenital heart defects are simple and can be easily corrected.  Others are complex; some can require a lifetime of specialized medical care which can be prohibitively expensive,” said Durbin.  “The Congenital Heart Futures Reauthorization Act bill will coordinate congenital heart disease research and help those with this challenge live longer.”


“Far too many vulnerable children are born with congenital heart defects. While we have made significant progress in improving these children’s lives, we still have much to do to learn how to provide the best care possible for these individuals throughout their lives. Our nation has an abiding obligation to support research into these medical conditions,” Senator Casey said. “This legislation is a bipartisan approach that has the potential to improve survival rates. We owe it to the children and adults living with congenital heart defects to do all we can to address their medical needs.”


Durbin first introduced the Congenital Heart Futures Act in 2009 with Senator Thad Cochran (R-MS) and Representatives Gus Bilirakis (R-FL) and Zack Space (D-OH).  The bill was included in the Affordable Care Act.


“Each year in our country, nearly 40,000 newborns are born with a congenital heart defect. It is the most common birth defect and the number one cause of birth defect related deaths. As a founder of the Congenital Heart Caucus, I understand the struggles these newborns and their families face. This bill helps give hope to these families,” said Bilirakis.  “This legislation will bring us one step closer to better treatments and potential cures for congenital heart defects.  We must pass this bill and continue our efforts to help our future generations live longer, healthier lives.”


“This bipartisan bill will enable the Centers for Disease Control to continue its vital study into early childhood congenital heart defects to assess the lifelong needs of those born with CHD,” said Schiff. “Both children and adults who are born with CHD will face lingering health risks and increased medical costs their entire lives, and this research funding is too important to be lost to congressional inaction.”


Supporters of today’s legislation include the Adult Congenital Heart Association, American Heart Association, Children’s Heart Foundation, National Down Syndrome Society, and Pediatric Congenital Heart Association.


“Hearing ‘there is something wrong with your baby's heart’ can be devastating, throwing into question the dreams and plans you have for your child.  This legislation provides a solid foundation for providing hope,” David Kasnic, Executive Director of the Pediatric Congenital Heart Association.  “Hope for a bright future for children born with congenital heart disease through research and a better understanding of CHD across the lifespan. The Pediatric Congenital Heart Association is grateful for the work of Senators Durbin and Casey and Representatives Bilirakis and Schiff and we are proud to support this legislation as we work together to Conquer CHD.”


“On behalf of the more than one million adults living with CHDs in the US, the Adult Congenital Heart Association is thrilled to endorse the Congenital Heart Futures Reauthorization Act.  Far too many people with CHDs are unaware of how their health and risks change throughout their lifespan, which is why we strongly support the provisions in the bill to promote research, surveillance and awareness of CHDs.  We salute Senator Durbin, Senator Casey, Representative Bilirakis and Representative Schiff for their commitment to and tireless advocacy regarding congenital heart issues,” said Glenn Tringali, National Executive Director, Adult Congenital Heart Association.  


While, there is currently no cure for congenital heart defects, modern medicine has made major advances in treating heart defects in newborns.  In 1950, a child born with a congenital heart defect only had a 20% chance of surviving, but today that number has increased to 90%.  Due to the increase in childhood survival rates, the population of people living with congenital heart challenges increases by an estimated 5% every year.


Survivors of successful childhood intervention, however, face life-long risks including heart failure, rhythmic disorders, stroke, renal dysfunction, and neuro-cognitive dysfunction.  Less than 10% of adults living with complex congenital heart problems currently receive recommended cardiac care, and many are unaware that they require life-long specialized health surveillance.