Congenital Heart Disease
We need your support for Surveillance and Research
Congenital Heart Defects are the most common and critical birth defects. Every 15 minutes, a child in the U.S. is born with a heart defect, or a structural abnormality of the heart. That isnearly 1 in 100 births or 40,000 babies each year. Although heart defects remain the leading cause of birth defect related infant death, both survival and life expectancy of individuals with congenital heart disease have significantly increased with earlier diagnosis, improved surgical interventions and better medical management. Estimates suggest that there are more than three million people in the United States living with the lifelong consequences of congenital heart disease.
Congenital Heart Disease is costly. Approximately 25% of babies with congenital heart disease will require life-saving, invasive intervention within the first few weeks and months of life. Yet, there is no cure. Congenital heart disease requires ongoing lifelong, costly, specialized care with a chronicrisk of serious cardiac, neurological and systemic problems in infancy, childhood and as adults.As a result, healthcare utilization among the congenital heart disease population is significantly higher than the general population. It is estimated that compared to their peers, the medical costs for individuals with congenital heart disease 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.
Federal support is essential to understanding Congenital Heart Disease. Despite how common, critical, and costlycongenital heart disease is, the understanding of the public health impact is surprisingly limited. In 2010, the Patient Protection and Affordable Care Act authorized congenital heart disease specific research and surveillance.[1] The Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) have begun to take steps to address this burden, needing additional resources to continue and expand their efforts. Most recently, in 2014, congenital heart disease was added to the Department of Defense Peer Reviewed Medical Research Program, reducing a significant gap in available research funding. However, continued federal investment is necessary to provide rigorous epidemiological and longitudinal public health surveillance and public health research on infants, children, adolescents and adults to better understandcongenital heart diseaseat every age, improve outcomes and reduce costs.
Increasing congenital heart disease funding at the CDC to $10.0 million in FY 2016 would allow for improved understanding of prevalence, healthcare utilization, and short and long-term physical and psychosocial outcomes, achieved by building upon the pilot congenital heart adolescent and adult surveillance program, incorporating public health research, developing a longitudinal cohort, and completing a survivorship study.
We urge Congress to:
- Provide $10.0 million in FY2016 to the Center for Disease Control and Prevention’s National Center on Birth Defects and Disabilities to support surveillance and public health research to build upon current activities to better understand the public health impact of congenital heart disease across the lifespan
- Support the National Institutes of Health’s efforts to develop innovative and cost effective treatment options for those living with congenital heart disease
- Continue robust funding of the Department of Defense Peer Reviewed Medical Program to help lessen the disparate research funding of the most common and costly birth defects.
Support these activities, today by:
- Signing the Congenital Heart Dear Colleague Letter
- Joining the Congressional Congenital Heart Caucus
- Submitting a Congenital Heart Appropriations Request
For additional information, contact Amy Basken at ; or Danielle Stephens at .
[1] Patient Protection and Affordable Care Act, §10411(b).