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HEARTS - to save hearts!

The HEARTS ACT

This Legislation was re-introduced in 2015 - no changes were made with the exception of dates. 

THE BILL:
Final Draft – this bill has not been issued a number yet stay tuned for updates.
112TH CONGRESS
1ST SESSION H. R.  3625
To amend title III of the Public Health Service Act to authorize and support the creation of cardiomyopathy education, awareness, and risk assessment materials and resources by the Secretary of Health and Human Services through the Centers for Disease Control and Prevention and the dissemination of such materials and resources by State educational agencies to identify more at-risk families.
IN THE HOUSE OF REPRESENTATIVES
Mr. PALLONE introduced the following bill; which was referred to the
Committee on( XXX date pending)
 
A BILL
 
To amend title III of the Public Health Service Act to authorize and support the creation of cardiomyopathy education, awareness, and risk assessment materials and resources by the Secretary of Health and Human Services through the Centers for Disease Control and Prevention and the dissemination of such materials and resources by State educational agencies to identify more at-risk families.
1 Be it enacted by the Senate and House of Representa
2tives of the United States of America in Congress assembled,
1 SECTION 1. SHORT TITLE.
2 This Act may be cited as the ‘‘Cardiomyopathy
3 Health Education, Awareness, Risk Assessment, and
4 Training in the Schools (HEARTS) Act of 2011’’.
5 SEC. 2. MATERIALS AND RESOURCES TO INCREASE EDU
6CATION AND AWARENESS OF CARDIO
7MYOPATHY AMONG SCHOOL ADMINISTRA
8TORS, EDUCATORS, AND FAMILIES.
9 Part P of title III of the Public Health Service Act
10 (42 U.S.C. 280g et seq.) is amended by adding at the end
11 the following new section:
12 ‘‘SEC. 399V–6. MATERIALS AND RESOURCES TO INCREASE
13 EDUCATION AND AWARENESS OF CARDIO
14 MYOPATHY AMONG SCHOOL ADMINISTRATORS, EDUCATORS, AND FAMILIES. 
16 ‘‘(a) MATERIALS AND RESOURCES.—Not later than
17 18 months after the date of the enactment of this section,
18 the Secretary of Health and Human Services (in this sec19
tion referred to as the ‘Secretary’), in conjunction with
20 the Director of the Centers for Disease Control and
21 Prevention (in this section referred to as the ‘Director’) and
22 in consultation with national patient advocacy and health
23 professional organizations expert in all forms of cardio24
myopathy, shall develop public education and awareness
25 materials and resources to be disseminated to school ad26
ministrators, educators, school health professionals, coach-
1 es, families, and other appropriate individuals. The mate2
rials and resources shall include—
3 ‘‘(1) background information to increase edu4
cation and awareness of cardiomyopathy among
5 school administrators, educators, and families;
6 ‘‘(2) a cardiomyopathy risk assessment work7
sheet for use by parents, guardians, or other care8
givers;
9 ‘‘(3) guidelines regarding the placement of
10 automated external defibrillators in schools and child
11 care centers;
12 ‘‘(4) training information on automated exter13
nal defibrillators and cardiopulmonary resuscitation;
14 and
15 ‘‘(5) recommendations for how schools and child
16 care centers can develop and implement a cardiac
17 emergency response plan.
18 ‘‘(b) DEVELOPMENT OF MATERIALS AND RE19
SOURCES.—The Secretary, through the Director, shall de20
velop and update as necessary and appropriate the mate21
rials and resources under subsection (a) and, in support
22 of such effort, the Secretary is encouraged to—
23 ‘‘(1) establish an advisory panel composed of—
24 ‘‘(A) representatives from multiple national
25 patient advocacy organizations and medical pro-
1 Professionals expert in all forms of cardio
2myopathy;
3 ‘‘(B) a representative from the Centers for
4 Disease Control and Prevention; and
5 ‘‘(C) representatives from other relevant
6 Federal agencies; and
7 ‘‘(2) engage in a memorandum of under8
standing or cooperative agreement with a national
9 nonprofit advocacy organization expert in all forms
10 of cardiomyopathy.
11 ‘‘(c) DISSEMINATION OF MATERIALS AND RE12
SOURCES.—Not later than 30 months after the date of
13 the enactment of this section, the Secretary, through the
14 Director, shall disseminate the materials and resources
15 under subsection (a) in accordance with the following:
16 ‘‘(1) DISTRIBUTION BY STATE EDUCATION
17 AGENCIES.—The Secretary shall make available such
18 materials and resources to State educational agen
19cies to distribute—
20 ‘‘(A) to school administrators, educators,
21 school health professionals, coaches and par
22ents, guardians, or other caregivers, the cardio
23myopathy education and awareness materials
24 and resources under subsection (a) ;
1 ‘‘(B) to parents, guardians, or other care
2givers, the cardiomyopathy risk assessment
3 worksheet described in subsection (a)(2); and
4 ‘‘(C) to school administrators and school
5 health professionals, the—
6 ‘‘(i) guidelines described in subsection
7 (a)(3);
8 ‘‘(ii) training information described in
9 subsection (a)(4); and
10 ‘‘(iii) recommendations described in
11 subsection (a)(5).
12 ‘‘(2) DISSEMINATION TO HEALTH DEPART
13MENTS AND PROFESSIONALS.—The Secretary shall
14 make available such materials and resources to State
15 and local health departments, pediatricians, hos
16pitals, and other health professionals, such as nurses
17 and first responders.
18 ‘‘(3) POSTING ON WEBSITE.—
19 ‘‘(A) CDC.—
20 ‘‘(i) IN GENERAL.—The Secretary,
21 through the Director, shall post the mate
22rials and resources developed under sub
23section (a) on the public Internet website
24 of the Centers for Disease Control and
25 Prevention.
1 ‘‘(ii) ADDITIONAL INFORMATION.—
2 The Director is encouraged to maintain on
3 such public Internet website such addi
4tional information regarding cardio
5myopathy as deemed appropriate by the
6 Director.
7 ‘‘(B) STATE EDUCATION AGENCIES.—State
8 educational agencies are encouraged to create
9 public Internet webpages dedicated to cardio
10myopathy and post the materials and resources
11 developed under subsection (a) on such
12 webpages.
13 ‘‘(d) REPORT TO CONGRESS.—Not later than 1 year
14 after the date of the enactment of this Act, and annually
15 thereafter, the Secretary shall submit to Congress a report
16 identifying the steps taken to increase public education
17 and awareness of cardiomyopathy as outlined under this
18 section.
19 ‘‘(e) DEFINITIONS.—For purposes of this section:
20 ‘‘(1) CARDIOMYOPATHY.—The term ‘cardio
21myopathy’ means a rare heart condition, which is a
22 disease of the heart muscle (myocardium)—
23 ‘‘(A) the symptoms of which may vary
24 from case to case, including—
1 ‘‘(i) in some cases, the presentation of
2 no symptoms (asymptomatic);
3 ‘‘(ii) in many cases, the symptoms of
4 a progressive condition that may result in
5 an impaired ability of the heart to pump
6 blood, fatigue, irregular heart-beats (ar
7rhythmia), and, potentially, sudden cardiac
8 death or heart failure; and
9 ‘‘(B) the recognized types of which include
10 dilated, hypertrophic, restrictive,
11 arrhythmogenic right ventricular dysplasia, and
12 left ventricular noncompaction.
13 ‘‘(2) SCHOOL ADMINISTRATORS.—The term
14 ‘school administrator’ means a principal, director,
15 manager, or other supervisor or leader within an ele
16mentary school or secondary school (as such terms
17 are defined under section 9101 of the Elementary
18 and Secondary Education Act of 1965 (20 U.S.C.
19 7801), State-based early education program, or child
20 care center.
21 ‘‘(3) SCHOOLS.—The term ‘school’ means an
22 early education program, child care center, or ele
23mentary school or secondary school (as such terms
24 are so defined).
1 ‘‘(4) NATIONAL NONPROFIT ADVOCACY ORGANI2
ZATIONS EXPERT IN ALL FORMS OF CARDIO3
MYOPATHY.—The term ‘national nonprofit advocacy
4 organizations expert in all forms of cardiomyopathy’
5 means organizations that provide support services to
6 families or fund research, and work to increase pub
7lic awareness and education regarding all types of
8 cardiomyopathy.
9 ‘‘(f) AUTHORIZATION OF APPROPRIATIONS.—To
10 carry out this section, there are authorized to be appro
11priated $1,000,000 for fiscal year 2013, $750,000 for fis
12cal year 2014, and $500,000 for each of fiscal years 2015
13 through 2017.’’.
 
THE PRESS RELEASES:
 FOR IMMEDIATE RELEASE: December 8, 2011
Contacts: Ray Zaccaro/Erin Bzymek (202) 225-4671
­­­­­­­­­­­­­­­­­­­­­­_________________________________________________________________________

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 aremost 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.”
 
HCMA Press release
 
 
M E D I A   A D V I S O R Y
 
FOR IMMEDIATE RELEASE                
 
 
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. (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.”
# # #
 
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.orgor call 973-983-7429.