Menendez, Lautenberg Introduce Legislation to Educate Families about Cardiomyopathy

Menendez, Lautenberg Introduce Legislation to Educate Families about Cardiomyopathy

Cardiomyopathy Estimated to Affect 30,000 Children

Washington - U.S. Senators Robert Menendez and Frank R. Lautenberg (D-NJ) today introduced the Cardiomyopathy Health Education, Awareness, Risk Assessment, and Training in the Schools (HEARTS) Act, which is designed to increase awareness of the disease and the risk of sudden cardiac arrest among health professionals, parents, and educators. Cardiomyopathy is a chronic and sometimes progressive disease in which the heart muscle is abnormally enlarged, thickened and/or stiffened. The actual muscle cells and the surrounding tissues of the heart become damaged and eventually the weakened heart loses the ability to pump blood effectively. February is National Heart Month.

"As a parent, I remember worrying over my children when they had a simple cold, so I cannot imagine the pain the parents of a child with cardiomyopathy must go through," said Menendez. "This is a devastating disease, one which we simply do not know enough about. Cardiomyopathy is a leading cause of sudden cardiac arrest, which strikes 7,000 children a year, with only a 5 percent survival rate.Schools need to be educated and ready for a cardiac emergency, as do families. The HEARTS Act is the first step toward raising awareness and saving lives."

"This legislation will help raise awareness about a deadly heart condition that threatens tens of thousands of young children" said Lautenberg. "Sadly, many more children may be at risk forcardiomyopathybut go undiagnosed because of failures to properly screen for the disease. It's time to raise awareness of this disease and provide parents, schools, and health departments with the tools to respond quickly and effectively when heart conditions strike."

The HEARTS Act has the support of 21 organizations, including the Children's Cardiomyopathy Foundation (CCF) in Tenafly, NJ, which was founded by the parents of two children who died from cardiomyopathy. CCF, the American Heart Association, and nineteen others wrote a letter to the Senators on behalf of The HEARTS Act bill.

"As a parent who lost two children to cardiomyopathy, one to sudden cardiac arrest, I thank Senators Menendez and Lautenberg for their leadership and foresight in introducing this life-saving legislation", said Lisa Yue, President and Founder of the Children's Cardiomyopathy Foundation (CCF) of Cresskill, New Jersey. "By educating families and schools about cardiomyopathy and the risk factors associated with sudden cardiac arrest, this legislation has the potential to save the lives of many children."

The HEARTS Act will give local schools the necessary tools and resources they need to act in a cardiac emergency and to protect children at risk of SCA.

This legislation requires the Secretary of Health and Human Services (HHS), in conjunction with the Director of the CDC and in consultation with national patient advocacy and health professional organizations, to develop public education materials and resources, including background information, a cardiomyopathy risk assessment form, AED placement guidelines for schools and child care centers, AED and cardiopulmonary resuscitation (CPR) training information, and recommendations for development and implementation of a cardiac emergency response plan in school. The materials will be disseminated by the HHS Secretary and CDC Director to school administrators, educators, health professionals, coaches, families, and other appropriate individuals. The legislation also requires that these materials be posted on the CDC and state health agency websites to further spread awareness and education.

Last December, Representative Frank Pallone introduced the same bill in the House.