Congenital Heart Futures Act
Assistant Senate Majority Leader Richard Durbin (D-IL) introduced the Congenital Heart Futures Act in the U.S. Senate in March, 2009. The act addresses the needs of the millions of children and adults in this country affected by Congenital Heart Defects (CHD), America’s most common birth defect, affecting approximately one out of every 100 babies born.
The Congenital Heart Futures Act is part of the Senate health care reform bill, “Patient Protection and Affordable Care Act,” which authorizes federal funding for Congenital Heart Disease research and calls for the creation of a comprehensive nationwide registry of actual occurrences of CHD. Establishment of a registry will improve data collection and centralize medical research on CHD. Federal support for CHD surveillance and research will help prevent premature death and disability in this rapidly growing and severely underserved population.
“A child is born with a congenital heart defect every fifteen minutes,” said Senator Durbin. “Despite the prevalence of Congenital Heart Disease, our 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.”
The research and registry will greatly benefit CHD patients of all ages. Thanks to medical advances, this population increases by five percent each year, as a large majority of patients now receive successful childhood cardiac treatment. These treatments are not curative though, and the majority of those living with repaired CHD require life-long, specialized cardiac care. Unfortunately, many adults living with Congenital Heart Disease received substandard care as children and face serious health risks. Most alarmingly, many of these adults have little to no knowledge of their disease and the specialized care they require.
On March 23, 2010 the Congenital Heart Futures Act was signed into law by President Obama as part of the Health Care Reform Bill, but it still needs funding. You can help by contacting your representative between now and April 22, 2010 (CHD Lobby Day) and telling them that you support this act and the millions of children and adults it serves. This Act will lead to improvements that will save lives.
Please speak out for the 1 in 100 – find your representative at: