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II
113th CONGRESS
1st Session
S. 254
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.
Short title
This Act may be cited as the
Cardiomyopathy Health Education,
Awareness, Risk Assessment, and Training in the Schools (HEARTS) Act of
2013.
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:
399V–6.
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 of Health and Human Services (in this
section referred to as the Secretary), in conjunction with the
Director of the Centers for Disease Control and Prevention (in this section
referred to as the Director) and in consultation with national
patient advocacy and health professional organizations expert in all forms of
cardiomyopathy, shall develop public education and awareness materials and
resources to be disseminated to school administrators, educators, school health
professionals, coaches, families, and other appropriate individuals. The
materials and resources shall include—
(1) background
information to increase education and awareness of cardiomyopathy and other
related causes of sudden cardiac death among school administrators, educators,
and families;
(2) a cardiomyopathy
risk assessment worksheet for use by parents, guardians, or other
caregivers;
(3) guidelines
regarding the placement of automated external defibrillators in schools and
child care centers;
(4) training information on automated external
defibrillators and cardiopulmonary resuscitation; and
(5) recommendations
for how schools and child care centers can develop and implement a cardiac
emergency response plan.
(b)
Development of
materials and resources
The Secretary, through the Director,
shall develop and update as necessary and appropriate the materials and
resources under subsection (a) and, in support of such effort, the Secretary is
encouraged to—
(1) establish an
advisory panel composed of—
(A) representatives
from multiple national patient advocacy organizations and medical professionals
expert in all forms of cardiomyopathy;
(B) a representative
from the Centers for Disease Control and Prevention; and
(C) representatives
from other relevant Federal agencies; and
(2) engage in a
memorandum of understanding or cooperative agreement with a national nonprofit
advocacy organization expert in all forms of cardiomyopathy.
(c)
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
under subsection (a) in accordance with the following:
(1)
Distribution by
State education 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 and parents,
guardians, or other caregivers, the cardiomyopathy education and awareness
materials and resources under subsection (a);
(B) to parents,
guardians, or other caregivers, the cardiomyopathy risk assessment worksheet
described in subsection (a)(2); and
(C) to school
administrators and school health professionals, the—
(i) guidelines
described in subsection (a)(3);
(ii) training
information described in subsection (a)(4); and
(iii) recommendations
described in subsection (a)(5).
(2)
Dissemination to
health departments and professionals
The Secretary shall make
available such materials and resources 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 education
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.
(d)
Report to
Congress
Not later than 1 year after the date of the enactment of
this section, and annually thereafter, the Secretary shall submit to Congress a
report identifying the steps taken to increase public education and awareness
of cardiomyopathy as outlined under this section.
(e)
Definitions
For
purposes of this section:
(1)
Cardiomyopathy
The
term cardiomyopathy means a rare heart condition, which is a
disease of the heart muscle (myocardium)—
(A) the symptoms of
which may vary from case to case, including—
(i) in
some cases, the presentation of no symptoms (asymptomatic);
(ii) in many cases,
the symptoms of a progressive condition that may result in an impaired ability
of the heart to pump blood, fatigue, irregular heart-beats (arrhythmia), and,
potentially, sudden cardiac death or heart failure; and
(B) the recognized
types of which include dilated, hypertrophic, restrictive, arrhythmogenic
right ventricular dysplasia, and left ventricular noncompaction.
(2)
School
administrators
The term school administrator means a
principal, director, manager, or other supervisor or leader within an
elementary school or secondary school (as such terms are defined under section
9101 of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7801)),
State-based early education program, or child care center.
(3)
Schools
The
term school means an early education program, child care center,
or elementary school or secondary school (as such terms are so defined).
(4)
National
nonprofit advocacy organizations expert in all forms of
cardiomyopathy
The term national nonprofit advocacy
organizations expert in all forms of cardiomyopathy means organizations
that provide support services to families or fund research, and work to
increase public awareness and education regarding all types of
cardiomyopathy.
(f)
Authorization of
appropriations
To carry out this section, there are authorized to
be appropriated $1,000,000 for fiscal year 2014, $750,000 for fiscal year 2015,
and $500,000 for each of fiscal years 2016 through
2018.
.