I 

118TH CONGRESS 

1ST SESSION H. R. 6829 

To amend the Public Health Service Act to authorize and support the creation 

and dissemination of cardiomyopathy education, awareness, and risk assessment materials and resources to identify more at-risk families, to 

authorize research and surveillance activities relating to cardiomyopathy, 

and for other purposes. 

IN THE HOUSE OF REPRESENTATIVES 

DECEMBER 14, 2023 

Mr. PALLONE (for himself and Mr. KIM of New Jersey) introduced the 

following bill; which was referred to the Committee on Energy and Commerce 

A BILL 

To amend the Public Health Service Act to authorize and 

support the creation and dissemination of cardiomyopathy education, awareness, and risk assessment materials and resources to identify more at-risk families, 

to authorize research and surveillance activities relating 

to cardiomyopathy, and for other purposes. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Cardiomyopathy 

5 Health Education, Awareness, Research, and Training in 

6 the Schools Act of 2023’’ or the ‘‘HEARTS Act of 2023’’. 


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1 SEC. 2. MATERIALS AND RESOURCES TO INCREASE EDU2 CATION AND AWARENESS OF CARDIO3 MYOPATHY AMONG SCHOOL ADMINISTRA4 TORS, EDUCATORS, AND FAMILIES. 

5 Part P of title III of the Public Health Service Act 

6 (42 U.S.C. 280g et seq.) is amended by adding at the end 

7 the following new section: 

8 ‘‘SEC. 399V–8. MATERIALS AND RESOURCES TO INCREASE 

9 EDUCATION AND AWARENESS OF CARDIO10 MYOPATHY AMONG SCHOOL ADMINISTRA11 TORS, EDUCATORS, AND FAMILIES. 

12 ‘‘(a) MATERIALS AND RESOURCES.—Not later than 

13 18 months after the date of the enactment of this section, 

14 the Secretary, in consultation with the Director of the 

15 Centers for Disease Control and Prevention (in this sec16 tion referred to as the ‘Director’) shall develop public edu17 cation materials and resources to be disseminated to 

18 school administrators, educators, school health profes19 sionals, coaches, families, guardians, caregivers, and other 

20 appropriate individuals. The materials and resources shall 

21 include— 

22 ‘‘(1) background information to increase edu23 cation and awareness of cardiomyopathy; 

24 ‘‘(2) guidelines regarding the placement of 

25 automated external defibrillators in schools, early 


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1 childhood education programs, and child care cen2 ters; 

3 ‘‘(3) training information on automated exter4 nal defibrillators and cardiopulmonary resuscitation; 

5 and 

6 ‘‘(4) recommendations for how schools, early 

7 childhood education programs, and child care centers 

8 can develop and implement a cardiac emergency re9 sponse plan. 

10 ‘‘(b) DISSEMINATION OF MATERIALS AND RE11 SOURCES.—Not later than 30 months after the date of 

12 the enactment of this section, the Secretary shall dissemi13 nate the materials and resources developed under sub14 section (a) in accordance with the following: 

15 ‘‘(1) DISTRIBUTION BY STATE EDUCATIONAL

16 AGENCIES.—The Secretary shall make available such 

17 materials and resources to State educational agen18 cies to distribute— 

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

20 school health professionals, coaches, families, 

21 guardians, caregivers, and other appropriate in22 dividuals, the background materials developed 

23 under subsection (a)(1); 

24 ‘‘(B) to parents, guardians, or other care25 givers, the risk assessment for individuals with 


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1 or at risk for cardiomyopathy developed pursu2 ant to section 399V–9(b)(1); and 

3 ‘‘(C) to school administrators, educators, 

4 school health professionals, and coaches— 

5 ‘‘(i) the guidelines described in sub6 section (a)(2); 

7 ‘‘(ii) the training information de8 scribed in subsection (a)(3); and 

9 ‘‘(iii) the recommendations described 

10 in subsection (a)(4). 

11 ‘‘(2) DISSEMINATION TO HEALTH DEPART12 MENTS AND PROFESSIONALS.—The Secretary shall 

13 make available the materials and resources devel14 oped under subsection (a) to State and local health 

15 departments, pediatricians, hospitals, and other 

16 health professionals, such as nurses and first re17 sponders. 

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 EDUCATIONAL AGENCIES.— 

8 State educational agencies are encouraged to 

9 create public Internet webpages dedicated to 

10 cardiomyopathy and post the materials and re11 sources developed under subsection (a) on such 

12 webpages. 

13 ‘‘(c) DEFINITIONS.—In this section: 

14 ‘‘(1) The term ‘school administrator’ means a 

15 principal, director, manager, or other supervisor or 

16 leader within an elementary school, secondary 

17 school, State-based early childhood education pro18 gram, or child care center. 

19 ‘‘(2) The term ‘school health professional’ 

20 means a health professional serving at an elemen21 tary school, secondary school, State-based early 

22 childhood education program, or child care center. 

23 ‘‘(3) The terms ‘early childhood education pro24 gram’, ‘elementary school’, and ‘secondary school’ 

25 have the meanings given to those terms in section 


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1 8101 of the Elementary and Secondary Education 

2 Act of 1965. 

3 ‘‘(4) The term ‘cardiomyopathy’ has the mean4 ing given such term in section 399V–9(c). 

5 ‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—For 

6 carrying out this section and section 399V–9, there is au7 thorized to be appropriated $5,000,000 for each of fiscal 

8 years 2025 through 2028.’’. 

9 SEC. 3. RESEARCH AND SURVEILLANCE ACTIVITIES RELAT10 ING TO CARDIOMYOPATHY. 

11 (a) CDC RESEARCH AND SURVEILLANCE.—Part P 

12 of title III of the Public Health Service Act (42 U.S.C. 

13 280g et seq.), as amended by section 2, is further amended 

14 by adding at the end the following new section: 

15 ‘‘SEC. 399V–9. RESEARCH AND SURVEILLANCE ACTIVITIES 

16 RELATING TO CARDIOMYOPATHY. 

17 ‘‘(a) REPORTS ON CDC NATIONAL CARDIO18 MYOPATHY SURVEILLANCE RESEARCH ACTIVITIES.— 

19 ‘‘(1) INITIAL REPORT.—Not later than June 1, 

20 2024, the Secretary, acting through the Director of 

21 the Centers for Disease Control and Prevention, 

22 shall submit to Congress an initial report on find23 ings and data generated from surveillance and re24 search activities conducted by the Centers for Dis25 ease Control and Prevention to improve the underVerDate Sep 11 2014 19:23 Jan 05, 2024 Jkt 049200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H6829.IH H6829

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1 standing of the prevalence and epidemiology of car2 diomyopathy across the lifespan, from birth to adult3 hood, with particular interest in the following: 

4 ‘‘(A) The health care costs, utilization, and 

5 natural history of individuals with cardio6 myopathy, in both the pediatric and adult popu7 lation. 

8 ‘‘(B) Estimates of cardiomyopathy-related 

9 emergency department visits and hospitaliza10 tions, in both the pediatric and adult popu11 lation. 

12 ‘‘(2) FINAL REPORT.—Not later than January 

13 1, 2029, the Secretary, acting through the Director 

14 of the Centers for Disease Control and Prevention, 

15 shall submit to Congress a final report on the con16 tent described in paragraph (1). 

17 ‘‘(3) PUBLIC ACCESS.—Subject to paragraph 

18 (4), the reports submitted under this subsection 

19 shall be made available to the public. 

20 ‘‘(4) PRIVACY PROTECTIONS.—The Secretary 

21 shall ensure that this subsection is carried out in a 

22 manner that complies with all applicable privacy 

23 laws under Federal and State law. 

24 ‘‘(b) IMPROVING RISK ASSESSMENTS FOR INDIVID25 UALS WITH CARDIOMYOPATHY.— 


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1 ‘‘(1) IN GENERAL.—The Secretary shall develop 

2 and make publicly available a risk assessment for in3 dividuals with or at risk for cardiomyopathy. Such 

4 risk assessment shall, at a minimum, include the fol5 lowing: 

6 ‘‘(A) Background information of the preva7 lence, incidence, and health impact of cardio8 myopathy, including all forms of cardio9 myopathy and their effects on pediatric, adoles10 cent, and adult individuals. 

11 ‘‘(B) A worksheet with variables and con12 ditions for an individual or health care provider 

13 to use in assessing whether the individual is at 

14 risk for cardiomyopathy. 

15 ‘‘(C) A worksheet with variables and 

16 stages of progression for an individual or health 

17 care provider to use in assessing whether and to 

18 what extent cardiomyopathy has progressed in 

19 the individual. 

20 ‘‘(D) Guidelines on cardiomyopathy 

21 screenings for individuals who are at risk for, 

22 or have a family history of, cardiomyopathy. 

23 ‘‘(2) STAKEHOLDER INPUT.—In carrying out 

24 paragraph (1), the Director of the Centers for DisVerDate Sep 11 2014 19:23 Jan 05, 2024 Jkt 049200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H6829.IH H6829

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1 ease Control and Prevention shall seek input from 

2 external stakeholders including— 

3 ‘‘(A) representatives from national patient 

4 advocacy organizations expert in all forms of 

5 cardiomyopathy; 

6 ‘‘(B) representatives from medical profes7 sional societies that specialize in the care of 

8 adults and pediatrics with cardiomyopathy; and 

9 ‘‘(C) representatives from other relevant 

10 Federal agencies. 

11 ‘‘(c) CARDIOMYOPATHY DEFINED.—For purposes of 

12 this section, the term ‘cardiomyopathy’ means a heart dis13 ease that affects the heart’s muscle (myocardium)— 

14 ‘‘(1) the symptoms of which may vary from 

15 case to case, including— 

16 ‘‘(A) cases in which no symptoms are 

17 present (asymptomatic); and 

18 ‘‘(B) cases in which there are symptoms of 

19 a progressive condition that may result from an 

20 impaired ability of the heart to pump blood, 

21 such as fatigue, irregular heartbeats (arrhyth22 mia), heart failure, and, potentially, sudden car23 diac death; and 

24 ‘‘(2) the recognized types of which include di25 lated, hypertrophic, restrictive, arrhythmogenic right 


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1 ventricular dysplasia, and left ventricular non-com2 paction.’’. 

3 (b) NIH RESEARCH.—Part A of title IV of the Public 

4 Health Service Act (42 U.S.C. 281 et seq.) is amended 

5 by inserting after section 404E the following new section: 

6 ‘‘SEC. 404F. CARDIOMYOPATHY RESEARCH. 

7 ‘‘(a) IN GENERAL.—The Director of NIH may ex8 pand, intensify, and coordinate research and related activi9 ties of the National Institutes of Health with respect to 

10 cardiomyopathy, which may include research with respect 

11 to— 

12 ‘‘(1) causation of cardiomyopathy, including ge13 netic causes and molecular biomarkers; 

14 ‘‘(2) long-term health outcomes in individuals 

15 with cardiomyopathy, including infants, children, 

16 teenagers, adults, and elderly individuals; and 

17 ‘‘(3) studies using longitudinal data and retro18 spective analysis to identify effective treatments and 

19 outcomes for individuals with cardiomyopathy. 

20 ‘‘(b) CARDIOMYOPATHY DEFINED.—For purposes of 

21 this section, the term ‘cardiomyopathy’ means a heart dis22 ease that affects the heart’s muscle (myocardium)— 

23 ‘‘(1) the symptoms of which may vary from 

24 case to case, including— 


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1 ‘‘(A) cases in which no symptoms are 

2 present (asymptomatic); and 

3 ‘‘(B) cases in which there are symptoms of 

4 a progressive condition that may result from an 

5 impaired ability of the heart to pump blood, 

6 such as fatigue, irregular heartbeats (arrhyth7 mia), heart failure, and, potentially, sudden car8 diac death; and 

9 ‘‘(2) the recognized types of which include di10 lated, hypertrophic, restrictive, arrhythmogenic right 

11 ventricular dysplasia, and left ventricular non-com12 paction.’’. 

13 (c) NIH REPORT.—Not later than 18 months after 

14 the date of the enactment of this Act, the Director of the 

15 National Institutes of Health shall submit to Congress a 

16 report— 

17 (1) outlining the ongoing research efforts of the 

18 National Institutes of Health regarding cardio19 myopathy; and 

20 (2) identifying— 

21 (A) a research agenda regarding adult 

22 forms of cardiomyopathy; 

23 (B) plans for researching cardiomyopathy 

24 affecting the pediatric population; and 


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1 (C) the areas of greatest need for such re2 search. 

Æ 


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