02.27.18

Bipartisan Schiff, Bilirakis “Heart Futures Reauthorization Act” Passes House

Legislation Supports Critical Research, Education and Awareness for Congenital Heart Disease

Washington D.C. - Yesterday, the U.S. House of Representatives passed the Congenital Heart Futures Reauthorization Act, introduced by Congressmen Adam Schiff (D-CA) and Gus Bilirakis (R-FL), which supports critical research, education and awareness for congenital heart disease (CHD). CHD is the most common birth defect and the leading cause of infant mortality. This bill raises awareness of the continuing impact congenital heart defects have throughout patients’ lifespans, promotes more research at the Centers for Disease Control (CDC) and National Institutes of Health (NIH), and encourages the development of lifelong, specialized care for patients with a congenital heart defect.

“Children born with congenital heart defects face lingering health risks and increased medical costs throughout their entire lives,” said Rep. Schiff. “This bipartisan bill will enable the CDC and NIH to continue vital research studies into early childhood congenital heart defects to assess the lifelong needs of those born with CHD.”

"Better data leads to better research. This bi-partisan initiative is about giving hope to families who have suffered and improving the quality of life for millions of Americans by investing in life-saving research," said Rep. Bilirakis. "I urge my Senate colleagues to do the right thing on behalf of sick kids and join me in this fight by sending the bill to the President’s desk as quickly as possible.”

Nearly 40,000 babies in America are born with CHD every year, and more than five percent will not live to see their first birthday. Even for those who receive successful intervention, there is no cure. Children and adults with CHD require ongoing, costly, specialized cardiac care, and face a lifelong risk of permanent disability and premature death. As a result, healthcare utilization among the CHD population is significantly higher than the general population.

First passed in 2010, the bipartisan Congenital Heart Futures Act expanded infrastructure to track the epidemiology of CHD at the CDC and increased lifelong CHD research at NIH. These efforts have improved the understanding of CHD across the lifespan of patients, age-specific prevalence, and factors associated with dropping out of appropriate specialty care.  Without action, these activities will expire. The Congenital Heart Futures Reauthorization Act will allow the CDC and NIH to build upon existing programs and focus on successful activities addressing this public health need.