[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H.R. 6829 Introduced in House (IH)]
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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.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Cardiomyopathy Health Education,
Awareness, Research, and Training in the Schools Act of 2023'' or the
``HEARTS Act of 2023''.
SEC. 2. MATERIALS AND RESOURCES TO INCREASE EDUCATION AND AWARENESS OF
CARDIOMYOPATHY AMONG SCHOOL ADMINISTRATORS, EDUCATORS,
AND FAMILIES.
Part P of title III of the Public Health Service Act (42 U.S.C.
280g et seq.) is amended by adding at the end the following new
section:
``SEC. 399V-8. MATERIALS AND RESOURCES TO INCREASE EDUCATION AND
AWARENESS OF CARDIOMYOPATHY AMONG SCHOOL ADMINISTRATORS,
EDUCATORS, AND FAMILIES.
``(a) Materials and Resources.--Not later than 18 months after the
date of the enactment of this section, the Secretary, in consultation
with the Director of the Centers for Disease Control and Prevention (in
this section referred to as the `Director') shall develop public
education materials and resources to be disseminated to school
administrators, educators, school health professionals, coaches,
families, guardians, caregivers, and other appropriate individuals. The
materials and resources shall include--
``(1) background information to increase education and
awareness of cardiomyopathy;
``(2) guidelines regarding the placement of automated
external defibrillators in schools, early childhood education
programs, and child care centers;
``(3) training information on automated external
defibrillators and cardiopulmonary resuscitation; and
``(4) recommendations for how schools, early childhood
education programs, and child care centers can develop and
implement a cardiac emergency response plan.
``(b) Dissemination of Materials and Resources.--Not later than 30
months after the date of the enactment of this section, the Secretary
shall disseminate the materials and resources developed under
subsection (a) in accordance with the following:
``(1) Distribution by state educational agencies.--The
Secretary shall make available such materials and resources to
State educational agencies to distribute--
``(A) to school administrators, educators, school
health professionals, coaches, families, guardians,
caregivers, and other appropriate individuals, the
background materials developed under subsection (a)(1);
``(B) to parents, guardians, or other caregivers,
the risk assessment for individuals with or at risk for
cardiomyopathy developed pursuant to section 399V-
9(b)(1); and
``(C) to school administrators, educators, school
health professionals, and coaches--
``(i) the guidelines described in
subsection (a)(2);
``(ii) the training information described
in subsection (a)(3); and
``(iii) the recommendations described in
subsection (a)(4).
``(2) Dissemination to health departments and
professionals.--The Secretary shall make available the
materials and resources developed under subsection (a) to State
and local health departments, pediatricians, hospitals, and
other health professionals, such as nurses and first
responders.
``(3) Posting on website.--
``(A) CDC.--
``(i) In general.--The Secretary, through
the Director, shall post the materials and
resources developed under subsection (a) on the
public Internet website of the Centers for
Disease Control and Prevention.
``(ii) Additional information.--The
Director is encouraged to maintain on such
public Internet website such additional
information regarding cardiomyopathy as deemed
appropriate by the Director.
``(B) State educational agencies.--State
educational agencies are encouraged to create public
Internet webpages dedicated to cardiomyopathy and post
the materials and resources developed under subsection
(a) on such webpages.
``(c) Definitions.--In this section:
``(1) The term `school administrator' means a principal,
director, manager, or other supervisor or leader within an
elementary school, secondary school, State-based early
childhood education program, or child care center.
``(2) The term `school health professional' means a health
professional serving at an elementary school, secondary school,
State-based early childhood education program, or child care
center.
``(3) The terms `early childhood education program',
`elementary school', and `secondary school' have the meanings
given to those terms in section 8101 of the Elementary and
Secondary Education Act of 1965.
``(4) The term `cardiomyopathy' has the meaning given such
term in section 399V-9(c).
``(d) Authorization of Appropriations.--For carrying out this
section and section 399V-9, there is authorized to be appropriated
$5,000,000 for each of fiscal years 2025 through 2028.''.
SEC. 3. RESEARCH AND SURVEILLANCE ACTIVITIES RELATING TO
CARDIOMYOPATHY.
(a) CDC Research and Surveillance.--Part P of title III of the
Public Health Service Act (42 U.S.C. 280g et seq.), as amended by
section 2, is further amended by adding at the end the following new
section:
``SEC. 399V-9. RESEARCH AND SURVEILLANCE ACTIVITIES RELATING TO
CARDIOMYOPATHY.
``(a) Reports on CDC National Cardiomyopathy Surveillance Research
Activities.--
``(1) Initial report.--Not later than June 1, 2024, the
Secretary, acting through the Director of the Centers for
Disease Control and Prevention, shall submit to Congress an
initial report on findings and data generated from surveillance
and research activities conducted by the Centers for Disease
Control and Prevention to improve the understanding of the
prevalence and epidemiology of cardiomyopathy across the
lifespan, from birth to adulthood, with particular interest in
the following:
``(A) The health care costs, utilization, and
natural history of individuals with cardiomyopathy, in
both the pediatric and adult population.
``(B) Estimates of cardiomyopathy-related emergency
department visits and hospitalizations, in both the
pediatric and adult population.
``(2) Final report.--Not later than January 1, 2029, the
Secretary, acting through the Director of the Centers for
Disease Control and Prevention, shall submit to Congress a
final report on the content described in paragraph (1).
``(3) Public access.--Subject to paragraph (4), the reports
submitted under this subsection shall be made available to the
public.
``(4) Privacy protections.--The Secretary shall ensure that
this subsection is carried out in a manner that complies with
all applicable privacy laws under Federal and State law.
``(b) Improving Risk Assessments for Individuals With
Cardiomyopathy.--
``(1) In general.--The Secretary shall develop and make
publicly available a risk assessment for individuals with or at
risk for cardiomyopathy. Such risk assessment shall, at a
minimum, include the following:
``(A) Background information of the prevalence,
incidence, and health impact of cardiomyopathy,
including all forms of cardiomyopathy and their effects
on pediatric, adolescent, and adult individuals.
``(B) A worksheet with variables and conditions for
an individual or health care provider to use in
assessing whether the individual is at risk for
cardiomyopathy.
``(C) A worksheet with variables and stages of
progression for an individual or health care provider
to use in assessing whether and to what extent
cardiomyopathy has progressed in the individual.
``(D) Guidelines on cardiomyopathy screenings for
individuals who are at risk for, or have a family
history of, cardiomyopathy.
``(2) Stakeholder input.--In carrying out paragraph (1),
the Director of the Centers for Disease Control and Prevention
shall seek input from external stakeholders including--
``(A) representatives from national patient
advocacy organizations expert in all forms of
cardiomyopathy;
``(B) representatives from medical professional
societies that specialize in the care of adults and
pediatrics with cardiomyopathy; and
``(C) representatives from other relevant Federal
agencies.
``(c) Cardiomyopathy Defined.--For purposes of this section, the
term `cardiomyopathy' means a heart disease that affects the heart's
muscle (myocardium)--
``(1) the symptoms of which may vary from case to case,
including--
``(A) cases in which no symptoms are present
(asymptomatic); and
``(B) cases in which there are symptoms of a
progressive condition that may result from an impaired
ability of the heart to pump blood, such as fatigue,
irregular heartbeats (arrhythmia), heart failure, and,
potentially, sudden cardiac death; and
``(2) the recognized types of which include dilated,
hypertrophic, restrictive, arrhythmogenic right ventricular
dysplasia, and left ventricular non-compaction.''.
(b) NIH Research.--Part A of title IV of the Public Health Service
Act (42 U.S.C. 281 et seq.) is amended by inserting after section 404E
the following new section:
``SEC. 404F. CARDIOMYOPATHY RESEARCH.
``(a) In General.--The Director of NIH may expand, intensify, and
coordinate research and related activities of the National Institutes
of Health with respect to cardiomyopathy, which may include research
with respect to--
``(1) causation of cardiomyopathy, including genetic causes
and molecular biomarkers;
``(2) long-term health outcomes in individuals with
cardiomyopathy, including infants, children, teenagers, adults,
and elderly individuals; and
``(3) studies using longitudinal data and retrospective
analysis to identify effective treatments and outcomes for
individuals with cardiomyopathy.
``(b) Cardiomyopathy Defined.--For purposes of this section, the
term `cardiomyopathy' means a heart disease that affects the heart's
muscle (myocardium)--
``(1) the symptoms of which may vary from case to case,
including--
``(A) cases in which no symptoms are present
(asymptomatic); and
``(B) cases in which there are symptoms of a
progressive condition that may result from an impaired
ability of the heart to pump blood, such as fatigue,
irregular heartbeats (arrhythmia), heart failure, and,
potentially, sudden cardiac death; and
``(2) the recognized types of which include dilated,
hypertrophic, restrictive, arrhythmogenic right ventricular
dysplasia, and left ventricular non-compaction.''.
(c) NIH Report.--Not later than 18 months after the date of the
enactment of this Act, the Director of the National Institutes of
Health shall submit to Congress a report--
(1) outlining the ongoing research efforts of the National
Institutes of Health regarding cardiomyopathy; and
(2) identifying--
(A) a research agenda regarding adult forms of
cardiomyopathy;
(B) plans for researching cardiomyopathy affecting
the pediatric population; and
(C) the areas of greatest need for such research.
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