Hypertrophic Cardiomyopathy Association Helps Draft Bill to Prevent Sudden Cardiac Arrest (SCA) in Children and Teens

Undiagnosed Silent Killer Causes Thousands of Deaths Every Year

HIBERNIA, N.J., Dec 08, 2011 (BUSINESS WIRE) -- Last year, a fortuitous meeting between Lisa Salberg, founder and CEO of the Hypertrophic Cardiomyopathy Association (HCMA), and Congressman Frank Pallone, Jr. (Dem., N.J.) was instrumental in the drafting of the Cardiomyopathy Health Education, Awareness, Risk Assessment, and Training in the Schools (HEARTs) Act, a bill which Pallone introduced to Congress today.

Calling awareness to sudden cardiac arrest is one of the cornerstones of the HCMA, the national resource for patients who have Hypertrophic Cardiomyopathy (HCM), the most common genetic heart disease. HCM, which results in a thickening of the heart muscle, is the leading cause of Sudden Cardiac Arrest (SCA) in children and young adults.

The HEARTs Act mandates raising awareness about SCA in schools and childcare centers and requires better prevention measures that will save young people's lives. It requires the Secretary of Health and Human Services to coordinate with the Centers for Disease Control as well as patient advocacy and health professional organizations to develop and distribute materials about SCA. Also, it requires guidelines regarding the placement of life-saving automated external defibrillators in schools and information on cardiopulmonary resuscitation (CPR) training.

In the US there are 600,000 people with HCM and there are nearly one million with other genetic conditions that can cause SCA in young people. With better awareness of warning signs and symptoms of heart disease in the young, thousands of lives could be saved each year.

"Most people find their way to me and the HCMA too late to save the life of a loved one," Salberg said. "Most heartbreaking is when I commiserate with moms and dads who lose seemingly healthy young children and teens."

"The HCMA is gratified that the HEARTs Act was introduced to help ensure that families have the opportunity to seek treatment for HCM and other causes of SCA in the young. If we save one person from suffering a cardiac arrest and the aftermath, this legislation would pay for itself in a year."source