II 

113TH CONGRESS 

1ST SESSION S. 254 

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 SENATE OF THE UNITED STATES 

FEBRUARY 7, 2013 

Mr. MENENDEZ (for himself and Mr. LAUTENBERG) introduced the following 

bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions 

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 Representa2 tives of the United States of America in Congress assembled, 


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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 2013’’. 

5 SEC. 2. MATERIALS AND RESOURCES TO INCREASE EDU6 CATION AND AWARENESS OF CARDIO7 MYOPATHY AMONG SCHOOL ADMINISTRA8 TORS, 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 CARDIO14 MYOPATHY AMONG SCHOOL ADMINISTRA15 TORS, 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 Pre21 vention (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, coachVerDate Mar 15 2010 22:29 Feb 19, 2013 Jkt 029200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\S254.IS S254

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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 and other 

5 related causes of sudden cardiac death among school 

6 administrators, educators, and families; 

7 ‘‘(2) a cardiomyopathy risk assessment work8 sheet for use by parents, guardians, or other care9 givers; 

10 ‘‘(3) guidelines regarding the placement of 

11 automated external defibrillators in schools and child 

12 care centers; 

13 ‘‘(4) training information on automated exter14 nal defibrillators and cardiopulmonary resuscitation; 

15 and 

16 ‘‘(5) recommendations for how schools and child 

17 care centers can develop and implement a cardiac 

18 emergency response plan. 

19 ‘‘(b) DEVELOPMENT OF MATERIALS AND RE20 SOURCES.—The Secretary, through the Director, shall de21 velop and update as necessary and appropriate the mate22 rials and resources under subsection (a) and, in support 

23 of such effort, the Secretary is encouraged to— 

24 ‘‘(1) establish an advisory panel composed of— 


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1 ‘‘(A) representatives from multiple national 

2 patient advocacy organizations and medical pro3 fessionals expert in all forms of cardio4 myopathy; 

5 ‘‘(B) a representative from the Centers for 

6 Disease Control and Prevention; and 

7 ‘‘(C) representatives from other relevant 

8 Federal agencies; and 

9 ‘‘(2) engage in a memorandum of under10 standing or cooperative agreement with a national 

11 nonprofit advocacy organization expert in all forms 

12 of cardiomyopathy. 

13 ‘‘(c) DISSEMINATION OF MATERIALS AND RE14 SOURCES.—Not later than 30 months after the date of 

15 the enactment of this section, the Secretary, through the 

16 Director, shall disseminate the materials and resources 

17 under subsection (a) in accordance with the following: 

18 ‘‘(1) DISTRIBUTION BY STATE EDUCATION

19 AGENCIES.—The Secretary shall make available such 

20 materials and resources to State educational agen21 cies to distribute— 

22 ‘‘(A) to school administrators, educators, 

23 school health professionals, coaches and par24 ents, guardians, or other caregivers, the cardioVerDate Mar 15 2010 22:29 Feb 19, 2013 Jkt 029200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\S254.IS S254

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1 myopathy education and awareness materials 

2 and resources under subsection (a); 

3 ‘‘(B) to parents, guardians, or other care4 givers, the cardiomyopathy risk assessment 

5 worksheet described in subsection (a)(2); and 

6 ‘‘(C) to school administrators and school 

7 health professionals, the— 

8 ‘‘(i) guidelines described in subsection 

9 (a)(3); 

10 ‘‘(ii) training information described in 

11 subsection (a)(4); and 

12 ‘‘(iii) recommendations described in 

13 subsection (a)(5). 

14 ‘‘(2) DISSEMINATION TO HEALTH DEPART15 MENTS AND PROFESSIONALS.—The Secretary shall 

16 make available such materials and resources to State 

17 and local health departments, pediatricians, hos18 pitals, and other health professionals, such as nurses 

19 and first responders. 

20 ‘‘(3) POSTING ON WEBSITE.— 

21 ‘‘(A) CDC.— 

22 ‘‘(i) IN GENERAL.—The Secretary, 

23 through the Director, shall post the mate24 rials and resources developed under sub25 section (a) on the public Internet website 


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1 of the Centers for Disease Control and 

2 Prevention. 

3 ‘‘(ii) ADDITIONAL INFORMATION.— 

4 The Director is encouraged to maintain on 

5 such public Internet website such addi6 tional information regarding cardio7 myopathy as deemed appropriate by the 

8 Director. 

9 ‘‘(B) STATE EDUCATION AGENCIES.—State 

10 educational agencies are encouraged to create 

11 public Internet webpages dedicated to cardio12 myopathy and post the materials and resources 

13 developed under subsection (a) on such 

14 webpages. 

15 ‘‘(d) REPORT TO CONGRESS.—Not later than 1 year 

16 after the date of the enactment of this section, and annu17 ally thereafter, the Secretary shall submit to Congress a 

18 report identifying the steps taken to increase public edu19 cation and awareness of cardiomyopathy as outlined under 

20 this section. 

21 ‘‘(e) DEFINITIONS.—For purposes of this section: 

22 ‘‘(1) CARDIOMYOPATHY.—The term ‘cardio23 myopathy’ means a rare heart condition, which is a 

24 disease of the heart muscle (myocardium)— 


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1 ‘‘(A) the symptoms of which may vary 

2 from case to case, including— 

3 ‘‘(i) in some cases, the presentation of 

4 no symptoms (asymptomatic); 

5 ‘‘(ii) in many cases, the symptoms of 

6 a progressive condition that may result in 

7 an impaired ability of the heart to pump 

8 blood, fatigue, irregular heart-beats (ar9 rhythmia), and, potentially, sudden cardiac 

10 death or heart failure; and 

11 ‘‘(B) the recognized types of which include 

12 dilated, hypertrophic, restrictive, arrhythmogen13 ic right ventricular dysplasia, and left ventric14 ular noncompaction. 

15 ‘‘(2) SCHOOL ADMINISTRATORS.—The term 

16 ‘school administrator’ means a principal, director, 

17 manager, or other supervisor or leader within an ele18 mentary school or secondary school (as such terms 

19 are defined under section 9101 of the Elementary 

20 and Secondary Education Act of 1965 (20 U.S.C. 

21 7801)), State-based early education program, or 

22 child care center. 

23 ‘‘(3) SCHOOLS.—The term ‘school’ means an 

24 early education program, child care center, or eleVerDate Mar 15 2010 22:29 Feb 19, 2013 Jkt 029200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\S254.IS S254

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1 mentary school or secondary school (as such terms 

2 are so defined). 

3 ‘‘(4) NATIONAL NONPROFIT ADVOCACY ORGANI4 ZATIONS EXPERT IN ALL FORMS OF CARDIO5 MYOPATHY.—The term ‘national nonprofit advocacy 

6 organizations expert in all forms of cardiomyopathy’ 

7 means organizations that provide support services to 

8 families or fund research, and work to increase pub9 lic awareness and education regarding all types of 

10 cardiomyopathy. 

11 ‘‘(f) AUTHORIZATION OF APPROPRIATIONS.—To 

12 carry out this section, there are authorized to be appro13 priated $1,000,000 for fiscal year 2014, $750,000 for fis14 cal year 2015, and $500,000 for each of fiscal years 2016 

15 through 2018.’’. 

Æ 


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