Bilirakis Bill to Help Heart Patients Headed to the President’s Desk
Tonight the Senate-amended version of the Congenital Heart Futures Reauthorization Act sponsored by Congressman Gus Bilirakis passed the House of Representatives. The bill is now headed to the President’s desk to become law, and will mark the 26th bill authored by Bilirakis to become law since 2015. 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. The bill had originally passed the House in February of 2018, but only cleared the Senate this month.
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. CHD is a true public health issue that does not discriminate by race, gender, or socio-economic status. The road ahead may be scary and uncertain for any parent with a newborn who has CHD, but this meaningful legislation gives hope to those coping with the diagnosis. It will also expand the infrastructure to track the epidemiology of congenital heart defects. For the sake of those living with CHD and the estimated 40,000 babies who will be born in the next year with CHD, Congressman Bilirakis made this a priority. Research is key to understanding the causes of CHD, preventing it and improving treatment. The near unanimous passage of this important bill will improve the care of people with CHD at all ages and advance the field in critical areas.
“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. Doing the right thing on behalf of sick kids is a moral imperative, and I am glad we were finally able to get it over the finish line,” said Bilirakis.