HEARTs is introduced to save lives

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

M E D I A   A D V I S O R Y

FOR IMMEDIATE RELEASE                     Contact: Wendy Hirschhorn; 212-826-8790

                                                                                        wendyhi@nyc.rr.com

Hibernia, N.J. (December 9, 2011) — 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.” 

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About the Hypertrophic Cardiomyopathy Association (HCMA) 

Founded in 1996 by Lisa Salberg, the HCMA is a not-for-profit 501(c) (3) organization that provides comprehensive information about Hypertrophic Cardiomyopathy (HCM), a genetic disease that causes a thickening of the heart muscle. The HCMA provides support and advocacy for HCM patients and their families and medical providers to help prevent untimely deaths and advance global understanding about this incurable disease. For more information, visit www.4hcm.org or call 973-983-7429.

 FOR IMMEDIATE RELEASE: December 8, 2011
Contacts: Ray Zaccaro/Erin Bzymek (202) 225-4671
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Pallone Introduces Bill to Combat Silent Killer in Young People, Sudden Cardiac Arrest

Washington, DC — Congressman Frank Pallone, Jr. Thursday introduced the Cardiomyopathy Health Education, Awareness, Risk Assessment, and Training in the Schools (HEARTs) Act, legislation to combat the leading cause of death on school property, Sudden Cardiac Arrest (SCA). Cardiomyopathy, one of the causes of SCA, is frequently misdiagnosed and only five percent of those affected survive it. Pallone’s bill aims to raise awareness where children are most often - in school.

The bill 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.

        “Too often we hear about heartbreaking cases in the news where otherwise healthy young people die very suddenly from what has been a silent killer,” said Pallone. “It’s my hope that this legislation would prevent many of those deaths, but we cannot prevent SCA without raising awareness about its causes.”

        In the US there are 600,000 people with Hypertrophic Cardiomyopathy and there are nearly one million with other conditions that can cause SCA in young people.

In 2010, two student athletes in New Jersey died from SCA eight months apart. 

        "The Hypertrophic Cardiomyopathy Association is happy to see HEARTS, a national initiative, introduced to raise awareness and ensure children and 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,” said Lisa Salberg, Founder and CEO, Hypertrophic Cardiomyopathy Association.

        According to the Centers for Disease Control and Prevention one student athlete falls victim to SCA every three to four days. These numbers are significant, but it’s important to note that all young people are affected by SCA and not just student athletes.”

“Children with cardiomyopathy are not always diagnosed and the consequences can be devastating," commented Lisa Yue, president and founder of the Children's Cardiomyopathy Foundation.  "By providing educational materials on cardiomyopathy to families and schools, this legislation has the potential to save the lives of many children at risk of sudden cardiac death."