Earlier this week, the Congenital Heart Futures Reauthorization Act, sponsored by Congressman Gus Bilirakis passed the House of Representatives.
This important legislation addresses the need to invest in continued research to assist the millions of Americans living with Congenital Heart Disease (CHD).
It is estimated that there are currently between 2-3 million adults and children living in the United States with CHD, and nearly 1 in every 100 babies are born with a CHD. Sadly, five percent of these babies will not live to see their first birthdays. However, due to recent advancements in technology, CHD patients are surviving longer. This legislation seeks to build upon that success by ensuring continued investment in surveillance research to assess the lifelong needs of individuals with CHD. These surveillance efforts will help improve understanding of CHD across the lifespan, from birth to adulthood.
In addition, the legislation emphasizes the need for continued biomedical research at the National Institutes of Health (NIH) on the diagnosis, treatment, and prevention of CHD. NIH will further research the causes of congenital heart defects, including genetic causes, and study long-term outcomes in individuals with CHD of all ages. NIH will also study data to identify effective treatments and outcomes, and identify barriers to lifelong care for individuals with congenital heart defects.
“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. 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,” said Bilirakis.