Durbin Legislation to Expand Congenital Heart Disease Research Included in Senate Health Care Legislation

[WASHINGTON, D.C.] – Assistant Senate Majority Leader Dick Durbin (D-IL) today announced that portions of his bipartisan legislation to increase awareness, education and research into congenital heart disease – a rapidly growing national health problem.  The Congenital Heart Futures Act aims to prevent premature death and disability and increase the quality of life for the nearly 1.8 million people in the United States living with congenital heart disease.  Durbin introduced the legislation earlier this year with Senator Thad Cochran (R-MS) and Representatives Zack Space (D-OH) and Gus Bilirakis (R-FL).


 “A child is born with a congenital heart defect every fifteen minutes,” said Durbin.  “Despite the prevalence of congenital heart disease, research, data collection, education and awareness are limited.  This legislation will expand research and broaden its scope to help those currently living with congenital heart disease and perhaps, one day, find cures.”


“We are making progress in the treatment of congenital heart disease as more infants survive what is commonly known as the No. 1 birth defect in the U.S.  Now, this provision in health care reform legislation will take us further by expanding research and establishing a surveillance system to allow us to track the epidemiology of the disease,” said Clyde W. Yancy, M.D., President of the American Heart Association.  “With advances in treatment, many children with congenital heart defects survive to adulthood, however, survivors with complex forms of the disease are likely to experience additional health problems later in life.  That’s why it’s extremely important to coordinate research to improve the prevention, diagnosis and treatment of this disease and remove barriers to care.”


There are over 30 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 36,000 a year). A child is born with a congenital heart defect every 15 minutes. These defects cause congenital heart disease—cardiovascular problems caused by the birth defect.


In 2004, the National Heart Lung and Blood Institute (NHLBI) convened a working group on congenital heart disease, which recommended developing a research network to conduct clinical research, establishing a national database of patients, and creating an outreach education program on the need for continued cardiac care.  Today’s Congenital Heart Futures Act builds upon the NHLBI’s recommendations by:


  • Developing a National Congenital Heart Disease Surveillance System at the CDC to track the epidemiology of congenital heart disease in individuals of all ages;


  • Promoting the coordination and expansion of the NHLBI’s congenital heart disease research, including a focus on causation; long term outcomes; diagnosis, treatment and prevention; longitudinal studies; and barriers to care.


While, there is currently no cure for congenital heart disease, 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 disease 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.  The estimated life expectancy for those with congenital heart disease is significantly lower than for the general population – age 55 for those with moderately complex heart defects and 35 to 40 for those with highly complex defects.  Less than 10% of adults living with complex congenital heart disease currently receive recommended cardiac care, and many are unaware that they require life-long specialized health treatment. 


The following organizations have endorsed this legislation: Advocate Healthcare in Chicago, Illinois; Adult Congenital Heart Association; American Academy of Pediatrics; American Heart Association; Children’s Heart Foundation; Children’s Memorial Hospital in Chicago, Illinois; Congenital Heart Information Network; La Rabida Children’s Hospital in Chicago, Illinois; March of Dimes; National Association of Children’s Hospitals; National Congenital Heart Coalition; and Rush University in Chicago, Illinois.