March 19, 2009 – Led by Senator Richard Durbin (D-IL) and Congressman Zack Space (D-OH), the federal government yesterday introduced new legislation that will address the needs of those affected by congenital heart defects (CHDs).
"A child is born with a congenital heart defect every fifteen minutes," said Durbin. "Despite the prevalence of congenital heart defects, 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 defects and perhaps, one day, find a cure."
The Children's Heart Foundation (CHF) is one of five organizations that participated in National Congenital Heart Lobby Day on Feb, 10. The day united organizations that support the National Congenital Heart Coalition (NCHC) in an effort to persuade senators and representatives to fund important initiatives surrounding congenital heart defects (CHDs). The CHF joined the Adult Congenital Heart Association (ACHA), Congenital Heart Information Network (CHIN), It's My Heart (IMH) and Mended Little Hearts (MLH) in the nation's capitol to lobby for the 'Congenital Heart Futures Act,' legislation calling for federal funding of congenital heart disease research, a national patient registry and education. The American College of Cardiology (ACC) also supported the effort.
"For too long, we have allowed congenital heart defects to limit, alter, and end the lives of the Americans they afflict," said Space. "Today, we take a significant step in the effort to end the horrible grip these conditions hold on far too many."
The 'Congenital Heart Futures Act' will be of great benefit to congenital heart disease patients, who represent nearly one percent of all live births each year. Thanks to medical advances, this population has increased by an estimated five percent each year. However, adults living with congenital heart disease receive substandard care and face a high risk of premature disability and death and need lifelong health surveillance. An essential goal of the Children's Heart Foundation is to support national advocacy to improve and prolong the lives of all who are born with heart defects and to prevent congenital heart disease.
The legislation is also meant to promote CHD awareness by creating a comprehensive public education and awareness campaign targeted toward the general public as well as the medical community. Finally, it will increase surveillance by encouraging the enhancement and expansion of its infrastructure to track the epidemiology of CHDs into a nationwide registry of actual occurrences.
Important next steps for the Children's Heart Foundation in concert with the NCHC include securing a number of critical co-sponsors in the House and Senate who will support the passage of this history making legislation. The CHF and coalition members will unite to seek the additional votes necessary to address the needs of congenital heart disease survivors.
Source: The Children's Heart Foundation
For more information: www.childrensheartfoundation.org