,i #aafth ,,congress #b;d ,session ,h4 ,r4 #faff ,,in ,,the ,,house ,,of ,,representatives ,march #aj1 #bjbj,mr4 ,kim 7for himself and ,mr4 ,barr7 introduced the following bill2 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 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 ,research1 and ,training in the ,schools ,act of #bjbj or the ,,hearts ,act of #bjbj4 #b4 ,materials and resources to increase education and awareness of cardiomyopathy among school administrators1 educators1 and families ,part ,p of title ,,iii of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bhj;g et seq47 is amended by adding at the end the following new section3 #cii,v-#g4 ,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 this section1 the ,secretary1 in conjunction with the ,director of the ,centers for ,disease ,control and ,prevention 7in this section referred to as the ,director7 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 background information to increase education and awareness of cardiomyopathy among school administrators1 educators1 and families2 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 this section1 the ,secretary1 through the ,director1 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 cardiomyopathy education and awareness materials and resources developed under subsection 7a77#a72 7,b7 to parents1 guardians1 or other caregivers1 the risk assessment for individuals with or at risk for cardiomyopathy developed pursuant to section #cii,v-#h7;b77#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 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#b7 ,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 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 7d7 ,authorization of appropriations ,for carrying out this section and section #cii,v-#h1 there is authorized to be appropriated #a1jjj1jjj for each of fiscal years #bjba through #bjbe4 4 #c4 ,research and surveillance activities relating to cardiomyopathy 7a7 ,,cdc research and surveillance ,part ,p of title ,,iii of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bhj;g et seq471 as amended by section #b1 is further amended by adding at the end the following new section3 #cii,v-#h4 ,research and surveillance activities relating to cardiomyopathy 7a7 ,reports on ,,cdc national cardiomyopathy surveillance research activities 7#a7 ,initial report ,not later than ,june #a1 #bjba1 the ,secretary1 acting through the ,director of the ,centers for ,disease ,control and ,prevention1 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 lifespan1 from birth to adulthood1 with particular interest in the following3 7,a7 ,the health care costs1 utilization1 and natural history of individuals with cardiomyopathy1 in both the pediatric and adult population4 7,b7 ,the number of adults and children affected by cardiomyopathy1 as well as age-specific mortality4 7#b7 ,final report ,not later than ,january #a1 #bjbf1 the ,secretary1 acting through the ,director of the ,centers for ,disease ,control and ,prevention1 shall submit to ,congress a final report on the content described in paragraph 7#a74 7#c7 ,public access ,subject to paragraph 7#d71 the reports submitted under this subsection shall be made available to the public4 7#d7 ,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 #bfd7;c7 of the ,health ,insurance ,portability and ,accountability ,act of #aiif4 7b7 ,improving risk assessments for individuals with cardiomyopathy 7#a7 ,in general ,the ,secretary1 acting through the ,director of the ,centers for ,disease ,control and ,prevention1 shall develop and make publicly available a risk assessment for individuals with or at risk for cardiomyopathy4 ,such risk assessment shall1 at a minimum1 include the following3 7,a7 ,background information of 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 the 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 the 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 ,cardiomyopathy defined ,for purposes of this section1 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-- 7,a7 cases in which no symptoms are present 7asymptomatic72 and 7,b7 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 4 7b7 ,federal working group 7#a7 ,in general ,not later than one year after the date of the enactment of this ,act1 the ,secretary of ,health and ,human ,services shall convene an interdisciplinary working group for the purpose of expanding cardiomyopathy research4 7#b7 ,duties ,the working group shall-- 7,a7 develop a research strategy to address the gaps in knowledge on the molecular and genetic causes of cardiomyopathy in children2 7,b7 identify approaches that could result in the development of preventive and disease-directed therapies specific to pediatric cardiomyopathies and heart failure2 and 7,c7 explore novel clinical trial methodologies and end points in an effort to optimize successful completion of clinical trials in this rare patient population4 7#c7 ,membership ,the ,secretary shall appoint to the working group members representing a range of stakeholders outside of the ,federal ,government with subject matter expertise relating to cardiomyopathy1 including-- 7,a7 pediatric cardiologists with expertise in the diagnosis and treatment of children with cardiomyopathies and heart failure and clinical trials related to the pediatric population2 7,b7 geneticists with expertise in pediatric cardiomyopathy and heart failure2 7,c7 cardiovascular molecular biologists2 7,d7 pharmacologists2 7,e7 research scientists with expertise in cardiomyopathy and heart failure2 and 7,f7 other stakeholders with relevant expertise1 as determined by the ,secretary4 7#d7 ,report to ,congress ,not later than #b years after the date of the enactment of this ,act1 the ,working ,group shall publish and submit to ,congress a report that contains-- 7,a7 a description of the activities of the working group2 7,b7 the findings and recommendations of the working group with respect to each of the topics described in paragraph 7#b72 and 7,c7 the recommendations of the working group relating to actions that ,federal agencies and ,congress can take to implement the recommendations described in subparagraph 7,b74 7#e7 ,no compensation ,a member of the working group shall serve without compensation4 7#f7 ,termination ,the working group shall terminate on the date on which the working group submits the report under paragraph 7#d74 7#g7 ,cardiomyopathy defined ,for purposes of this subsection1 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