Title: HEARTS Act of 2017
Policy area: Health

Summary:
Cardiomyopathy Health Education, Awareness, Research, and Training in the Schools Act of 2017 or HEARTS Act of 2017
This bill establishes a series of programs and requirements relating to cardiomyopathy, including school awareness campaigns and research initiatives.

[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[H.R. 3880 Introduced in House (IH)]

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115th CONGRESS
  1st Session
                                H. R. 3880

  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

                           September 28, 2017

 Mr. Pallone 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 2017'' or the 
``HEARTS Act of 2017''.

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-7. 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 conjunction 
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 among school administrators, 
        educators, and families;
            ``(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, 
through the Director, 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 
                cardiomyopathy education and awareness materials and 
                resources 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-
                8(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.
    ``(d) Authorization of Appropriations.--For carrying out this 
section and section 399V-8, there is authorized to be appropriated 
$1,000,000 for each of fiscal years 2018 through 2022.''.

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-8. RESEARCH AND SURVEILLANCE ACTIVITIES RELATING TO 
              CARDIOMYOPATHY.

    ``(a) Reports on CDC National Cardiomyopathy Surveillance Research 
Activities.--
            ``(1) Initial report.--Not later than January 1, 2020, 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) The number of adults and children affected by 
                cardiomyopathy, as well as age-specific mortality.
            ``(2) Final report.--Not later than January 1, 2025, 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) Patient privacy.--The Secretary shall ensure that 
        this subsection is carried out in a manner that complies with 
        the requirements applicable to a covered entity under the 
        regulations promulgated pursuant to section 264(c) of the 
        Health Insurance Portability and Accountability Act of 1996.
    ``(b) Improving Risk Assessments for Individuals With 
Cardiomyopathy.--
            ``(1) In general.--The Secretary, acting through the 
        Director of the Centers for Disease Control and Prevention, 
        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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