Support legislation that will improve care for people with Congenital Heart Disease
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February is American Heart Month.  While there are many important heart related health issues, I am particularly passionate about 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 million -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, 5 percent of these babies will not live to see their first birthdays, as CHD is the most common birth defect and the leading cause of birth defect-related infant mortality. However, there are currently more adults living with CHD than children, which means that people are surviving longer due to recent advancements in technology. I want to build upon that success.

This disease has touched my own family members and friends, including my former chief of staff. Their courage in the face of physical and emotional pain, the mental anguish that accompanies the uncertainty of living into adulthood with a condition that has insufficient medical research to offer any certainty about what lies ahead and the unconditional support of their loved ones has always been motivational.   


Their stories inspired me to author H.R. 1222, the Congenital Heart Futures Reauthorization Act, a bipartisan bill, which will ensure continued investment in surveillance research to assess the lifelong needs of individuals with CHD.  These surveillance efforts will help improve our 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.

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 my bill gives hope to those coping with the diagnosis. Even for those who receive successful intervention, we know it is not a cure. Children and adults born with CHD require ongoing, costly, specialized cardiac care, and they face a lifelong risk of permanent disability and premature death.  As a result, health care utilization among the CHD population is significantly higher than the general population.  It is estimated that compared to their peers, the medical costs for individuals with congenital heart defects are 10 to 20 times greater. Hospitalization costs for pediatric patients alone total more than $5.6 billion each year, which is 15 percent of all hospitalization costs for patients 20 years of age and younger.  Despite its prevalence and significance, there are still gaps in research and standards of care for CHD patients.  That is why passage of my bill is so important.  We have to 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, there’s more work to be done. Research is key to understanding the causes of CHD, preventing it and improving treatment.  The work directed by my legislation will improve the care of people with CHD at all ages and advance the field in critical areas.

The data obtained from the Surveillance projects will help guide the research done by NIH and other investigators. Better data leads to better research. These efforts address critical gaps and will contribute to a better future for people with CHD.  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. I urge my colleagues to look inside their hearts and join me in this fight to move this important bill through the legislative process as quickly as possible.  

Gus Bilirakis is a member of the House Energy and Commerce Subcommittee on Health. He is co-chair of the House Congenital Heart Caucus.