I 

113TH CONGRESS 

1ST SESSION H. R. 565 

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 

FEBRUARY 6, 2013 

Mr. PALLONE introduced the following bill; which was referred to the 

Committee on Energy and Commerce 

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, coachmstockstill on DSK4VPTVN1PROD with BILLS

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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 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 promstockstill on DSK4VPTVN1PROD with BILLS

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1 fessionals expert in all forms of cardio2 myopathy; 

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 agen19 cies to distribute— 

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

21 school health professionals, coaches and par22 ents, guardians, or other caregivers, the cardio23 myopathy education and awareness materials 

24 and resources under subsection (a); 

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1 ‘‘(B) to parents, guardians, or other care2 givers, 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 DEPART13 MENTS AND PROFESSIONALS.—The Secretary shall 

14 make available such materials and resources to State 

15 and local health departments, pediatricians, hos16 pitals, 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 mate22 rials and resources developed under sub23 section (a) on the public Internet website 

24 of the Centers for Disease Control and 

25 Prevention. 

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1 ‘‘(ii) ADDITIONAL INFORMATION.— 

2 The Director is encouraged to maintain on 

3 such public Internet website such addi4 tional information regarding cardio5 myopathy 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 cardio10 myopathy 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 ‘cardio21 myopathy’ 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— 

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

2 no symptoms (asymptomatic); and 

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 (ar7 rhythmia), and, potentially, sudden cardiac 

8 death or heart failure; and 

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

10 dilated, hypertrophic, restrictive, arrhythmogen11 ic right ventricular dysplasia, and left ventric12 ular noncompaction. 

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

14 ‘school administrator’ means a principal, director, 

15 manager, or other supervisor or leader within an ele16 mentary 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 

20 child care center. 

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

22 early education program, child care center, or ele23 mentary school or secondary school (as such terms 

24 are so defined). 

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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 pub7 lic 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 appro11 priated $1,000,000 for fiscal year 2014, $750,000 for fis12 cal year 2015, and $500,000 for each of fiscal years 2016 

13 through 2018.’’. 

Æ 

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