,,ib ,union ,calendar ,no4 #dcb #aahth ,,congress #b;d ,session ,h4 ,r4 #fhbi ,report ,no4 #aah-ebj ,,in ,,the ,,house ,,of ,,representatives ,december #ad1 #bjbc,mr4 ,pallone 7for himself and ,mr4 ,kim of ,new ,jersey7 introduced the following bill2 which was referred to the ,committee on ,energy and ,commerce ,may #bb1 #bjbd;,additional sponsors3 ,mr4 ,bishop of ,georgia1 ,mr4 ,posey1 and ,mr4 ,doggett ,may #bb1 #bjbd,reported with an amendment1 committed to the ,committee of the ,whole ,house on the ,state of the ,union1 and ordered to be printed,strike out all after the enacting clause and insert the part printed in italic,for text of introduced bill1 see copy of bill as introduced on ,december #ad1 #bjbc ,a ,,bill ,to amend the ,public ,health ,service ,act to authorize and support the creation and dissemination of cardiomyopathy education1 awareness1 and risk assessment materials and resources to identify more at-risk families1 to authorize research and surveillance activities relating to cardiomyopathy1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,cardiomyopathy ,health ,education1 ,awareness1 and ,research1 and ,,aed ,training in the ,schools ,act of #bjbd or the ,,hearts ,act of #bjbd4 #b4 ,cardiomyopathy health education1 awareness1 and research1 and ,,aed training in schools 7a7 ,in general ,the ,public ,health ,service ,act is amended by inserting after section #cab 7#db ,u4,s4,c4 #bdd7 the following3 #cab;,a4 ,materials and resources to increase education and awareness of cardiomyopathy among school administrators1 educators1 and families 7a7 ,materials and resources ,not later than #ah months after the date of the enactment of the ,,hearts ,act of #bjbd1 the ,secretary1 in consultation with the ,director of the ,centers for ,disease ,control and ,prevention1 shall develop public education materials and resources to be disseminated to school administrators1 educators1 school health professionals1 coaches1 families1 guardians1 caregivers1 and other appropriate individuals4 ,the materials and resources shall include-- 7#a7 information on the signs1 symptoms1 and risk factors associated with high-risk cardiac conditions and genetic heart rhythm abnormalities that may cause sudden cardiac arrest in children1 adolescents1 and young adults1 including-- 7,a7 cardiomyopathy2 7,b7 long ,,qt syndrome1 ,brugada syndrome1 catecholaminergic polymorphic ventricular tachycardia1 short ,,qt syndrome1 and ,wolff-,parkinson-,white syndrome2 and 7,c7 other high-risk cardiac conditions1 as determined by the ,secretary2 7#b7 guidelines regarding the placement of automated external defibrillators in schools1 early childhood education programs1 and child care centers2 7#c7 training information on automated external defibrillators and cardiopulmonary resuscitation2 and 7#d7 recommendations for how schools1 early childhood education programs1 and child care centers can develop and implement a cardiac emergency response plan4 7b7 ,dissemination of materials and resources ,not later than #cj months after the date of the enactment of the ,,hearts ,act of #bjbd1 the ,secretary shall disseminate the materials and resources developed under subsection 7a7 in accordance with the following3 7#a7 ,distribution by ,state educational agencies ,the ,secretary shall make available such materials and resources to ,state educational agencies to distribute-- 7,a7 to school administrators1 educators1 school health professionals1 coaches1 families1 guardians1 caregivers1 and other appropriate individuals1 the information developed under subsection 7a77#a72 7,b7 to parents1 guardians1 or other caregivers1 the cardiomyopathy risk assessment developed pursuant to section #cab;,b7b77#a72 and 7,c7 to school administrators1 educators1 school health professionals1 and coaches-- 7i7 the guidelines described in subsection 7a77#b72 7ii7 the training information described in subsection 7a77#c72 and 7iii7 the recommendations described in subsection 7a77#d74 7#b7 ,dissemination to health departments and professionals ,the ,secretary shall make available the materials and resources developed under subsection 7a7 to ,state and local health departments1 pediatricians1 hospitals1 and other health professionals1 such as nurses and first responders4 7#c7 ,posting on website 7,a7 ,,cdc 7i7 ,in general ,the ,secretary1 through the ,director1 shall post the materials and resources developed under subsection 7a7 on the public ,internet website of the ,centers for ,disease ,control and ,prevention4 7ii7 ,additional information ,the ,director is encouraged to maintain on such public ,internet website such additional information regarding cardiomyopathy as deemed appropriate by the ,director4 7,b7 ,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 7a7 on such webpages4 7c7 ,definitions ,in this section3 7#a7 ,the term cardiomyopathy means a heart disease that affects the heart's muscle 7myocardium7-- 7,a7 the symptoms of which may vary from case to case1 including-- 7i7 cases in which no symptoms are present 7asymptomatic72 and 7ii7 cases in which there are symptoms of a progressive condition that may result from an impaired ability of the heart to pump blood1 such as fatigue1 irregular heartbeats 7arrhythmia71 heart failure1 and1 potentially1 sudden cardiac death2 and 7,b7 the recognized types of which include dilated1 hypertrophic1 restrictive1 arrhythmogenic right ventricular dysplasia1 and left ventricular non-compaction4 7#b7 ,the term ,director means the ,director of the ,centers for ,disease ,control and ,prevention4 7#c7 ,the terms early childhood education program1 elementary school1 and secondary school have the meanings given to those terms in section #haja of the ,elementary and ,secondary ,education ,act of #aife4 7#d7 ,the term school administrator means a principal1 director1 manager1 or other supervisor or leader within an elementary school1 secondary school1 ,state-based early childhood education program1 or child care center4 7#e7 ,the term school health professional means a health professional serving at an elementary school1 secondary school1 ,state-based early childhood education program1 or child care center4 #cab;,b4 ,activities relating to cardiomyopathy 7a7 ,report on ,,cdc national cardiomyopathy activities 7#a7 ,in general ,not later than #ah months after the date of the enactment of the ,,hearts ,act of #bjbd1 the ,secretary1 acting through the ,director of the ,centers for ,disease ,control and ,prevention1 shall submit to ,congress a report on findings generated from existing activities conducted by the ,centers for ,disease ,control and ,prevention to improve the understanding of the prevalence and epidemiology of cardiomyopathy across the lifespan1 from birth to adulthood1 with particular interest in the following3 7,a7 ,the natural history of individuals with cardiomyopathy1 in both the pediatric and adult population4 7,b7 ,estimates of cardiomyopathy-related emergency department visits and hospitalizations1 in both the pediatric and adult population4 7#b7 ,public access ,subject to paragraph 7#c71 the report submitted under this subsection shall be made available to the public4 7#c7 ,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 law4 7b7 ,improving risk assessments for individuals with cardiomyopathy 7#a7 ,in general ,the ,secretary shall develop and make publicly available a cardiomyopathy risk assessment for health care providers and individuals4 ,such risk assessment shall1 at a minimum1 include the following3 7,a7 ,background information on the prevalence1 incidence1 and health impact of cardiomyopathy1 including all forms of cardiomyopathy and their effects on pediatric1 adolescent1 and adult individuals4 7,b7 ,a worksheet with variables and conditions for an individual or health care provider to use in assessing whether an individual is at risk for cardiomyopathy4 7,c7 ,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 an individual4 7,d7 ,guidelines on cardiomyopathy screenings for individuals who are at risk for1 or have a family history of1 cardiomyopathy4 7#b7 ,stakeholder ,input ,in carrying out paragraph 7#a71 the ,director of the ,centers for ,disease ,control and ,prevention shall seek input from external stakeholders including-- 7,a7 representatives from national patient advocacy organizations expert in all forms of cardiomyopathy2 7,b7 representatives from medical professional societies that specialize in the care of adults and pediatrics with cardiomyopathy2 and 7,c7 representatives from other relevant ,federal agencies4 7c7 ,definition ,in this section1 the term cardiomyopathy has the meaning given to such term in section #cab;,a4 #cab;,c4 ,cardiomyopathy research 7a7 ,in general ,the ,secretary1 in consultation with the ,director of the ,national ,institutes of ,health1 may expand and coordinate research and related activities of the ,national ,institutes of ,health with respect to cardiomyopathy1 which may include research with respect to-- 7#a7 causation of cardiomyopathy1 including genetic causes and molecular biomarkers2 7#b7 long-term health outcomes in individuals with cardiomyopathy1 including infants1 children1 teenagers1 adults1 and elderly individuals2 and 7#c7 studies using longitudinal data and retrospective analysis to identify effective treatments and outcomes for individuals with cardiomyopathy4 7b7 ,nonduplication ,the ,secretary shall ensure that any research and activities related to cardiomyopathy under this section do not unnecessarily duplicate activities1 programs1 or efforts of other agencies and offices within the ,department of ,health and ,human ,services4 7c7 ,,nih report ,not later than #ah months after the date of the enactment of the ,,hearts ,act of #bjbd1 the ,secretary1 in consultation with the ,director of the ,national ,institutes of ,health1 shall submit to ,congress a report-- 7#a7 outlining the ongoing research efforts of the ,national ,institutes of ,health regarding cardiomyopathy2 and 7#b7 identifying-- 7,a7 a research agenda regarding adult forms of cardiomyopathy2 7,b7 plans for researching cardiomyopathy affecting the pediatric population2 and 7,c7 the areas of greatest need for such research4 7d7 ,cardiomyopathy defined ,in this section1 the term cardiomyopathy has the meaning given to such term in section #cab;,a4 #cab;,d4 ,promoting student access to ,a,e,ds and ,,cpr 7a7 ,in general ,the ,secretary shall award grants to eligible entities to develop and implement a comprehensive program to promote student access to automated external defibrillators 7in this section referred to as ,a,e,ds7 and cardiopulmonary resuscitation 7in this section referred to as ,,cpr7 in public elementary schools and secondary schools4 7b7 ,use of funds ,an eligible entity receiving a grant under subsection 7a7 may use funds received through such grant to carry out any of the following activities3 7#a7 ,developing and providing comprehensive materials to establish ,,aed and ,,cpr programs in public elementary schools and secondary schools4 7#b7 ,providing support for ,,cpr and ,,aed training programs in such schools for students1 staff1 and related sports volunteers4 7#c7 ,providing support for developing a cardiac emergency response plan within such schools4 7#d7 ,purchasing ,a,e,ds that have been approved under section #eae of the ,federal ,food1 ,drug1 and ,cosmetic ,act1 cleared under section #eaj7k7 of such ,act1 or classified under section #eac7;f77#b7 of such ,act4 7#e7 ,purchasing necessary ,,aed batteries and performing necessary ,,aed maintenance 7such as by replacing ,,aed pads7 in accordance with the labeling of the ,,aed involved4 7#f7 ,replacing old and outdated ,,aed and ,,cpr equipment1 machinery1 and educational materials4 7c7 ,eligibility2 application ,to be eligible for a grant under subsection 7a71 an entity shall-- 7#a7 be a local educational agency 7including a public charter school operating as a local educational agency under ,state law71 in consultation with a qualified health care entity2 and 7#b7 submit to the ,secretary an application at such time1 in such manner1 and containing such information as the ,secretary may reasonably require4 7d7 ,definitions ,in this section3 7#a7 ,,esea terms ,the terms elementary school1 local educational agency1 and secondary school have the meanings given such terms in section #haja of the ,elementary and ,secondary ,education ,act of #aife4 7#b7 ,qualified health care entity ,the term qualified health care entity means a health care entity that-- 7,a7 is-- 7i7 a public entity2 or 7ii7 an organization that is described in section #eja7;c7 of the ,internal ,revenue ,code of #aihf and exempt from taxation under section #eja7;a7 of such ,code2 7,b7 demonstrates an ability to develop1 train1 and implement a comprehensive program to promote student access to defibrillation in public elementary and secondary schools2 and 7,c7 is qualified in providing technical assistance in ,,aed and ,,cpr training4 4 7b7 ,authorization of appropriations ,section #cab7;e7 of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bdd7;e77 is amended by striking the first sentence and inserting the following3 ,for the purpose of carrying out this section and sections #cab;,a1 #cab;,b1 #cab;,c1 and #cab;,d1 there is authorized to be appropriated #be1jjj1jjj for each of fiscal years #bjbe through #bjbi44 ,may #bb1 #bjbd,reported with an amendment1 committed to the ,committee of the ,whole ,house on the ,state of the ,union1 and ordered to be printed