The Children's Cardiomyopathy Foundation (CCF) works with members of Congress, federal agencies, and patient advocacy groups to educate stakeholders on cardiomyopathies affecting children. The focus has been on federal legislations that reduce the fatal impact of the disease and address the need for more research and education on pediatric cardiomyopathy
The Foundation has worked with the Senate Appropriations Subcommittee on Defense and the Labor, Health, and Human Services Subcommittees to increase focus on pediatric cardiomyopathy through the inclusion of cardiomyopathy specific language in the appropriations bill.
- Included cardiomyopathy as an approved research topic in the Department of Defense Peer Reviewed Medical Research Program (PRMRP). Resulted in more than $42.5 million in additional federal research funding.
- Added cardiomyopathy as a budget line item to the NIH budget.
- Integrated information about the signs, symptoms, and risk factors of pediatric cardiomyopathy into the Centers for Disease Control and Prevention (CDC) existing programs, including the Division of Heart Disease and Stroke Prevention, the Division of Reproductive Health, the National Center for Birth Defects, and Development Disabilities, and its Division of Population Health.
- Encourage the National Heart, Lung, and Blood Institute’s (NHLBI) to renew grant funding for the North American Pediatric Cardiomyopathy Registry.
Cardiomyopathy HEARTS Act
The Cardiomyopathy Health, Education, Awareness, Risk Assessment, and Training in the Schools (HEARTS) Act was first introduced by Rep. Frank Pallone (NJ-06) in December 2011 with Sens. Robert Menendez (D-NJ) and Frank Lautenberg (D-NJ) introducing the companion piece in February 2012.
In March 2020, the Cardiomyopathy HEARTS act was reintroduced by Reps. Andy Kim (NJ-03) and Andy Barr (KY-06) as the first bipartisan legislation on cardiomyopathy (H.R. 6166). The legislation focused on research and education components aimed at improving survival for children with cardiomyopathy. The bill proposed that the Centers for Disease Control and Prevention (CDC) develop educational materials and resources on cardiomyopathy and disseminate them to school administrators, educators, school nurses, coaches, and families.
The bill also encouraged the CDC to collect data and conduct surveillance research to understand the prevalence and epidemiology of cardiomyopathy. The bill requested that the National Institutes of Health (NIH) organize an interdisciplinary working group to develop research strategies to address gaps in knowledge on pediatric cardiomyopathy.
- Cardiomyopathy HEARTS Act Issue Brief
- Cardiomyopathy HEARTS Act Bill Text – H.R. 6166
- Cardiomyopathy HEARTS Act Press Release
SAFE PLAY Act
The Supporting Athletes, Families, and Educators to Protect the Lives of Athletic Youth (SAFE PLAY) Act was first introduced by Reps. Lois Capps (CA-24), Bill Pascrell (NJ-09), and Sen. Robert Menendez (D-NJ) July 2014 to promote safe sports guidelines for youth athletes. It was reintroduced April 2022 by Sen. Menendez and Rep. Pascrell.
The SAFE PLAY Act is a comprehensive youth sports bill that includes best practices on preventing, documenting, and addressing cardiac emergencies. It includes provisions for educating parents, schools, and health professionals about higher-risk heart conditions such as cardiomyopathy. The bill requests the Centers for Disease Control and Prevention (CDC) to develop and disseminate educational resources on cardiomyopathy through schools to encourage families to evaluate their cardiac health history and check for cardiomyopathy symptoms. The bill recommends state grants for automatic external defibrillators (AEDs) and cardiopulmonary resuscitation (CPR) training in public schools, as well as guidelines for emergency preparedness for a cardiac event. In addition, the CDC would provide national data on student athletes impacted by cardiomyopathy and other cardiac condition.