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Gus Bilirakis Gets Congenital Heart Futures Reauthorization Act to Donald Trump's Desk

December 20, 2018 - 9:30am
Dick Durbin, Gus Bilirakis and Todd Young
Dick Durbin, Gus Bilirakis and Todd Young

U.S. Rep. Gus Bilirakis, R-Fla., scored a win this week as the Congenital Heart Futures Reauthorization Act is headed for President Donald Trump’s desk. 

The House passed Bilirakis’ proposal on Wednesday night with 355 members backing it and seven libertarian Republicans including U.S. Rep. Justin Amash of Michigan and U.S. Rep. Mark Sanford of South Carolina voting against it.  Forty Republicans and 30 Democrats did not vote on the bill including Florida Republicans Vern Buchanan, Ileana Ros-Lehtinen, Dennis Ross and Ted Yoho and Florida Democrat U.S. Rep. Frederica Wilson however all of those representatives voted to back the proposal when it was first on the House floor back in February. 

Four members of the Florida delegation--Republicans Ros-Lehtinen and U.S. Rep. Dan Webster and Democrat U.S. Reps. Stephanie Murphy and Darren Soto--cosponsored the proposal. 

Earlier in the week, the U.S. Senate passed its version of the bill, which was championed by U.S. Sen. Dick Durbin, D-Ill., and U.S. Sen. Todd Young, R-Ind., without opposition. U.S. Sen. Bill Nelson, D-Fla., who was defeated in his bid for a fourth term last month was a cosponsor. 

Durbin, who lost his daughter to a heart condition, and Bilirakis--along with then U.S. Sen. Thad Cochran, R-Miss., and then U.S. Rep. Zack Space, D-Ohio--brought out the Congenital Heart Futures Act in 2009 to advance “research to build a set of best practices and understanding for how to screen and care for newborns with health defects.” The bill was included in then President Barack Obama’s federal healthcare law.    

The House passed the Senate’s version of the bill on Wednesday. 

“This legislation will promote federal research on congenital heart defects (CHD) and raise awareness of the impact these health problems have throughout patients’ lives.  The Senate-passed Congenital Heart Futures Reauthorization Act increases the funding authorization level for the Centers for Disease Control and Prevention (CDC) to $10 million per year, compared to the current funding level of $4 million, which will help states collect data on the prevalence of CHD and understand trends, health care needs, and disparities among the one million children and 1.4 million adults living with CHD,” Durbin’s office noted.  

“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,” noted Bilirakis’ office. “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,” Bilirakis’ office continued."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.”

Bilirakis weighed in after the legislation cleared the House on Wednesday night. 

“Better data leads to better research,” he said. This bipartisan 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.” 

“If a loved one ever has the misfortune of getting sick or being born with a serious medical condition, you hope there’s a treatment or care option for them,” Durbin said after the Senate passed his proposal. “That’s why I’ve fought to increase biomedical research—resulting in a $9 billion funding increase for our National Institutes of Health over the past four years.  And that’s why passing the bipartisan Congenital Heart Futures Reauthorization Act is so important.  It will improve research, data collection, and awareness so we can establish a standard of care for the 2.5 million American survivors with this serious birth defect, and provide real hope for their futures.”

“Gaining a better understanding of congenital heart defects is critical to the nearly 1 in 100 babies born with CHD and the millions of survivors living with this disease,” said Young. “That’s why I helped lead the Congenital Heart Futures Reauthorization Act with Senator Durbin, to increase research funding and awareness for congenital heart defects. I’m proud this bipartisan legislation has passed the Senate and is now one step closer to becoming law and saving lives.”

The legislation has the backing of the Pediatric Congenital Heart Association, Adult Congenital Heart Association,  American Heart Association, American Academy of Pediatrics, Children’s Hospital Association, American College of Cardiology, Society for Thoracic Surgeons, Children’s Heart Foundation and Mended Little Hearts.


Thank you so much to those that dedicated hard work and commitment to seeing this bill become a law.

Mr Bilirakus and all. I was born with a Chd which was not diagnosed until the age of 43. I am now 63 and just had my 3rd open heart surgery. Being female I have found it quite difficult to get the proper care and treatment but perhaps I could offer education or information to someone doing research. I am fortunate to still be alive. I am a former registered nurse. I met with Mr Bilirakis in Washington DC some years ago on Mental Health issues. I am glad for your continued support on CHD. I feel like I could offer more ...Thank you all so much I was not aware that this bill existed.

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