,i #aai? ,,congress #b;d ,session ,h4 ,r4 #gaah ,,9 ,,! ,,h\se ,,( ,,repres5tatives ,janu>y #ae1 #bjbf,mr4 ,pet]s 7= himself1 ,mr4 ,bilirakis1 ,mr4 ,veasey1 ,mr4 ,bald]son1 ,mr4 ,mull91 ,mr4 ,c>ey1 ,ms4 ,h\lahan1 & ,ms4 ,salaz>7 introduc$ ! foll[+ bill2 :i* 0 ref]r$ to ! ,committee on ,en]gy & ,comm]ce ,a ,,bill ,to am5d title ,,xix ( ! ,social ,security ,act to cl>ify t :ole g5ome & :ole exome sequ5c+ = *ildr5 ) c]ta9 m$ical ne$s is cov]$ "u ! ,m$icaid program4 #a4 ,%ort title ,?is ,act may be cit$ z ! ,g5omic ,answ]s = ,*ildr5's ,heal? ,act ( #bjbf4 #b4 ,cl>ify+ t :ole g5ome & :ole exome sequ5c+ = *ildr5 ) c]ta9 m$ical ne$s is cov]$ "u ! ,m$icaid program 7a7 ,9 g5]al ,section #aije ( ! ,social ,security ,act 7#db ,u4,s4,c4 #acif;d7 is am5d$-- 7#a7 9 subsection 7r7-- 7,a7 by r$esignat+ p>agraph 7#e7 z p>agraph 7#f72 & 7,b7 by ins]t+ aft] p>agraph 7#d7 ! foll[+ new p>agraph3 7#e7 ,:ole g5ome sequ5c+ & :ole exome sequ5c+ 7z def9$ 9 subsection 7kk771 :e!r furni%$ 9 ! inpati5t or outpati5t sett+1 if ord]$ by a physician or o!r provid] act+ )9 ! provid]'s scope ( practice "u ,/ate law z a fir/-ti] te/ = an individual suspect$ to h a g5etic disord]1 r>e disease1 or a heal? condition ( unkn[n orig91 includ+ #a or m cong5ital anomalies1 a global developm5tal delay1 or an intellectual disability4 2 & 7#b7 by add+ at ! end ! foll[+ new subsection3 7kk7 ,:ole g5ome sequ5c+ & :ole exome sequ5c+ ,= purposes ( subsection 7r77#e71 ! t]m :ole g5ome sequ5c+ & :ole exome sequ5c+-- 7#a7 means ! det]m9ation ( a sequ5ce ( deoxyribonucleic acid bases 9 ! g5ome tak5 or d]iv$ f an individual1 &1 if = ! prim>y b5efit ( ! individual's diagnosis or treatm5t1 a fir/ degree biological relative or relatives ( su* individual = ! purpose ( det]m9+ :e!r #a or m pot5tially disease-caus+ g5etic v>iants are pres5t 9 ! g5ome ( su* individual or su* biological fir/-degree relative2 & 7#b7 includes-- 7,a7 ! sequ5c+ ( ! :ole g5ome or ! :ole exome2 & 7,b7 any analysis1 int]pretation1 & data report d]iv$ f su* sequ5c+4 4 7b7 ,additional updates ,section #aijb7;a7 ( ! ,social ,security ,act 7#db ,u4,s4,c4 #acif;a7a77 is am5d$-- 7#a7 9 p>agraph 7#hh71 by /rik+ & at ! end2 7#b7 9 p>agraph 7#hi71 by /rik+ ! p]iod & ins]t+ 2 &2 & 7#c7 by ins]t+ aft] p>agraph 7#hi7 ! foll[+ new p>agraph3 7#ij7 provide t paym5t = :ole g5ome sequ5c+ & :ole exome sequ5c+ 7z def9$ 9 section #aije7kk77 is made sep>ately & is n bundl$ z "p ( paym5t = any o!r m$ical assi/ance4 4 7c7 ,outrea* & education ,= purposes ( promot+ aw>5ess ( & access to :ole g5ome & exome sequ5c+ "u section #aije7r7 ( ! ,social ,security ,act 7#db ,u4,s4,c4 #acif;d7r771 ! ,secret>y ( ,heal? & ,human ,s]vices %all-- 7#a7 conv5e national organizations 7includ+ at lea/ ^? organizations repres5t+ p$iatricians1 speciali/s 9 p$iatric r>e diseases1 *ildr5's hospitals1 g5etici/s1 g5etic c\nselors1 laboratory te/ develop]s71 ,/ates1 hospitals & heal? sy/ems1 individuals ) r>e diseases1 & ^? national organizations repres5t+ ,m$icaid manag$ c>e organizations to id5tify *all5ges & opportunities 9 implem5tation ( ! am5dm5ts made by ?is section1 includ+ pot5tial be/ practices t m9imize d5ials ( claims = m$ical assi/ance "u ! ,/ate plan "u title ,,xix ( su* ,act result+ f use ( prior au?orization or adm9i/rative requirem5ts2 7#b7 conduct outrea* to national organizations 7includ+ at lea/ ^? organizations repres5t+ hospitals1 heal? sy/ems1 *ildr5's hospitals1 p$iatricians1 & g5etici/s71 ,/ates1 national organizations repres5t+ ,m$icaid manag$ c>e oganizations1 national organizations repres5t+ r>e disease pati5ts & families1 & national organizations repres5t+ ,m$icaid-eligible *ildr5 & _! families to ensure !y are aw>e ( ! e>ly & p]iodic scre5+1 diagno/ic1 & treatm5t s]vices b5efit "u title ,,xix ( su* ,act & c b5efit f access to requir$ scre5+s & necess>y treatm5t s]vices2 & 7#c7 n lat] ?an #b ye>s aft] ! date ( ! enactm5t ( ?is ,act1 publi% on ! public website ( ! ,dep>tm5t ( ,heal? & ,human ,s]vices a report t includes-- 7,a7 paym5t am\nts = :ole g5ome sequ5c+ & :ole exome sequ5c+ "u ea* ,/ate plan "u title ,,xix ( su* ,act2 & 7,b7 in=mation relat+ to ! numb] ( *ildr5 receiv+ su* sequ5c+ "u su* ,/ate plans1 heal? outcomes1 types ( s]vices provid$ z a result ( su* sequ5c+1 & o!r su* relevant in=mation4 7d7 ,report ,n lat] ?an #b ye>s aft] ! date ( ! enactm5t ( ?is ,act1 ! ,comptroll] ,g5]al ( ! ,unit$ ,/ates %all d ! foll[+3 7#a7 ,collect & analyze fe$back reg>d+ implem5tation ( ! am5dm5ts made by ?is ,act f ! organizations & entities describ$ 9 p>agraph 7#a7 or 7#b7 ( subsection 7b71 includ+-- 7,a7 exp]i5ces 9 access+ :ole g5ome sequ5c+ & :ole exome sequ5c+ & results pursuant to su* am5dm5ts1 includ+ any b>ri]s to su* access2 7,b7 *anges to c>e or s]vices furni%$ aft] su* sequ5c+2 7,c7 id5tification ( rema9+ *all5ges1 if any1 relat$ to access to su* sequ5c+ = individuals eligible = e>ly & p]iodic scre5+1 diagno/ic1 & treatm5t s]vices "u ! ,m$icaid program2 & 7,d7 heal? pr(essional aw>5ess ( su* am5dm5ts4 7#b7 ,assess ! foll[+ = impacts on access to su* sequ5c+ "u su* program = su* individuals3 7,a7 ,prior au?orization1 :i* may include assessm5t ( impacts relat$ to delay ( c>e & unc]ta9ty or surprise ( paym5t4 7,b7 ,work=ce & reimbursem5t *all5ges = g5etic c\nselors4 7,c7 ,! ext5t to :i* m>ket co/ is align$ ) ! ,m$ic>e cl9ical laboratory fee s*$ule & ! degree to :i* ! ,secret>y ( ,heal? & ,human ,s]vices' adju/m5t ( ! fee s*$ule might m accurately reflect m>ket realities & support af=dability4 7#c7 ,make recomm5dations to ! ,secret>y ( ,heal? & ,human ,s]vices relat+ to additional guidance or improvem5ts t may be made bas$ on ! fe$back collect$ "u p>agraph 7#a7 & ! assessm5t describ$ 9 p>agraph 7#b74 7e7 ,effective date ,! am5dm5ts made by ?is section %all apply beg9n+ ,janu>y #a1 #bjbg4