,,ii #aai? ,,congress #b;d ,session ,s4 #cgfc ,,9 ,,! ,,s5ate ,,( ,,! ,,unit$ ,,/ates ,febru>y #c1 #bjbf,ms4 ,murk[ski 7= h]self & ,mr4 ,coons7 introduc$ ! foll[+ bill2 :i* 0 read twice & ref]r$ to ! ,committee on ,f9ance ,a ,,bill ,to am5d title ,,xviii ( ! ,social ,security ,act to provide cov]age ( ,,als-relat$ s]vices "u ! ,m$ic>e program = individuals diagnos$ ) amyotrophic lat]al scl]osis1 & = o!r purposes4 #a4 ,%ort title ,?is ,act may be cit$ z ! ,,als ,bett] ,c>e ,act4 #b4 ,f9d+s ,congress makes ! foll[+ f9d+s3 7#a7 ,amyotrophic lat]al scl]osis 79 ?is section1 ref]r$ to z ,,als7 is a progressive & debilitat+ neurodeg5]ative disease4 7#b7 ,key s]vices t include 7b are n limit$ to7 provid+ specializ$ physician or nurse practition] support1 occupational !rapy support1 spee* pa?ology support1 physical !rapy1 diet>y support1 respiratory support1 regi/]$ nurse support1 & coord9ation ( ! furni%+ ( durable m$ical equipm5t are crucial = manag+ ! complex m$ical ne$s ( ,,als pati5ts4 7#c7 ,/udies h %[n ,,als cl9ics t provide ^! key s]vices to ,,als pati5ts ext5d ^! pati5ts' lifespans & improve ! quality ( _! lives4 7#d7 ,^! key s]vices are furni%$ by a range ( heal?c>e pr(essionals4 7#e7 ,facilities provid+ c>e to ,,als pati5ts curr5tly face inadequate ,m$ic>e reimbursem5t = ! key s]vices !y (f] to ^! pati5ts4 7#f7 ,insuffici5t reimbursem5t creates significant *all5ges = facilities specializ+ 9 ,,als c>e1 result+ 9 ext5d$ wait times = pati5ts 9 ne$ ( crucial s]vices & hamp]+ ! ability ( ^! facilities to innovate & improve ! quality ( c>e provid$ to ,,als pati5ts4 7#g7 ,improv$ reimbursem5t rates w\ld enc\rage facilities to inve/ 9 rese>*1 innovation1 & te*nology1 lead+ to enhanc$ treatm5t options = ,,als & improv$ pati5t outcomes4 7#h7 ,remote m$ical managem5t options = individuals suff]+ f ,,als mu/ be a crucial "p ( access to c>e = su* individuals1 especially ^? liv+ 9 rural areas or c>e des]ts4 7#i7 ,teleheal? is an ess5tial managem5t option ref]r$ to 9 p>agraph 7#h7 & c assi/ 9 deliv]+ timely & compreh5sive c>e1 z ,,als pati5ts liv+ 9 rural areas or c>e des]ts (t5 face *all5ges 9 access+ specializ$ ,,als c>e & c\ld o!rwise be requir$ to travel long travel di/ances--(t5 ) c>egiv]s or family memb]s4 7#aj7 ,teleheal? is especially important 9 ma9ta9+ access to c>e = ,,als pati5ts z ! disease progresses & ,,als pati5ts h m limit$ mobility1 :i* may make x *all5g+ to att5d 9-p]son appo9tm5ts regul>ly4 7#aa7 ,l[ fund+ & difficulty 9 /aff+ = ,,als cl9ical trials delay ! developm5t & availability ( pot5tial treatm5ts & !rapies = individuals liv+ ) ! disease4 7#ab7 ,inadequate fund+ = ,,als cl9ical trials also imp$es ! ability to attract & reta9 qualifi$ rese>*]s1 cl9icians1 & support /aff1 limit+ ! ov]all progress & success ( ^! trials4 #c4 ,provid+ = cov]age ( ,,als-relat$ s]vices "u ! m$ic>e program = individuals diagnos$ ) amyotrophic lat]al scl]osis 7a7 ,9 g5]al ,section #ahfa ( ! ,social ,security ,act 7#db ,u4,s4,c4 #aciex7 is am5d$-- 7#a7 9 subsection 7s77#b7-- 7,a7 by add+ & at ! end ( subp>agraph 7,,jj72 & 7,b7 by add+ at ! end ! foll[+ new subp>agraph3 7,,kk7 ,,als-relat$ s]vices 7z def9$ 9 subsection 7nnn77 furni%$ on or aft] ,janu>y #a1 #bjbg2 2 & 7#b7 by add+ at ! end ! foll[+ new subsection3 7nnn7 ,,als-,relat$ s]vices 7#a7 ,,als-relat$ s]vices ,! t]m ,,als-relat$ s]vices means ! foll[+ items & s]vices t are furni%$ to a cov]$ ,,als individual 9 an outpati5t sett+ by a qualifi$ provid] 7z def9$ 9 section #ahcd7;aa77#f77 7or by ano!r provid] ( s]vices "u an arrangem5t made by a qualifi$ provid]7 = ! c>e & treatm5t ( su* an individual ) respect to ! progression ( amyotrophic lat]al scl]osis3 7,a7 ,specializ$ physician or nurse practition] support4 7,b7 ,occupational !rapy support4 7,c7 ,spee* pa?ology support4 7,d7 ,physical !rapy4 7,e7 ,diet>y support4 7,f7 ,respiratory support4 7,g7 ,regi/]$ nurse support4 7,h7 ,coord9ation ( ! furni%+ ( durable m$ical equipm5t necess>y = ! managem5t ( ! complex m$ical ne$s ( a cov]$ ,,als individual4 7#b7 ,cov]$ ,,als individual ,! t]m cov]$ ,,als individual means an individual :o is m$ically det]m9$ to h amyotrophic lat]al scl]osis 7z describ$ 9 section #bbf7;h774 4 7b7 ,paym5t = ,,als-,relat$ s]vices ,section #ahcd ( ! ,social ,security ,act 7#db ,u4,s4,c4 #aciem7 is am5d$ by add+ at ! end ! foll[+ new subsections3 7aa7 ,paym5t = ,,als-,relat$ s]vices 7#a7 ,9 g5]al ,! ,secret>y %all implem5t a paym5t sy/em "u :i* a s+le paym5t det]m9$ 9 accordance ) ! succe$+ p>agraphs is made to a qualifi$ provid] 7z def9$ 9 p>agraph 7#f77 = ,,als-relat$ s]vices 7z def9$ 9 p>agraph 7#a7 ( section #ahfa7nnn77 furni%$ to a cov]$ ,,als individual 7z def9$ 9 p>agraph 7#b7 ( su* section7 dur+ a visit1 9 addition to any o!r paym5t t may be made = su* s]vices "u ?is title4 7#b7 ,base paym5t am\nt 7,a7 ,9 g5]al ,! am\nt ( ! s+le paym5t describ$ 9 p>agraph 7#a7 = ,,als-relat$ s]vices furni%$ dur+ a ye> is equal to-- 7i7 = #bjbg1 #hjj2 7ii7 = #bjbh1 #hjj 7or1 if great]1 ! paym5t am\nt recomm5d$ by ! ,comptroll] ,g5]al ( ! ,unit$ ,/ates 9 ! report describ$ 9 subp>agraph 7,c772 & 7iii7 = #bjbi & ea* subsequ5t ye>-- 7,i7 ! am\nt = ! prec$+ ye>1 increas$ by ! ,,als s]vices m>ket basket p]c5tage increase 7z def9$ 9 clause 7i7 ( subp>agraph 7,b77 = su* ye>2 or 7,,ii7 9 ! case su* ye> is an applicable ye> 7z def9$ 9 clause 7ii7 ( su* subp>agraph71 ! paym5t am\nt recomm5d$ by ! ,comptroll] ,g5]al 9 ! mo/ rec5t report submitt$ "u subp>agraph 7,c71 if great] ?an ! am\nt t w\ld be det]m9$ = su* ye> "u subclause 7,i74 7,b7 ,def9itions ,9 ?is p>agraph3 7i7 ,,als s]vices m>ket basket p]c5tage increase ,! t]m ,,als s]vices m>ket basket p]c5tage increase means1 = a ye>1 ! ,secret>y's e/imate ( ! p]c5tage increase 9 co/s ( an appropriate mix1 z det]m9$ by ! ,secret>y1 ( items & s]vices t are ,,als-relat$ s]vices ov] ! prec$+ ye>4 7ii7 ,applicable ye> ,! t]m applicable ye> means #bjcj & e ?ird ye> !reaft]4 7,c7 ,report by ! ,comptroll] ,g5]al 7i7 ,9 g5]al ,n lat] ?an ,janu>y #a1 #bjbg1 & n lat] ?an ,janu>y #a ( e ?ird ye> !reaft]1 ! ,comptroll] ,g5]al ( ! ,unit$ ,/ates %all1 9 consultation ) qualifi$ provid]s eligible = paym5t "u ?is subsection1 submit to ! ,secret>y a report t recomm5ds a s+le paym5t am\nt = ,,als-relat$ s]vices t takes into acc\nt ! av]age am\nt ( paym5t = ea* item or s]vice includ$ 9 ,,als-relat$ s]vices t ! ,comptroll] ,g5]al e/imates w\ld h be5 payable-- 7,i7 "u ?is title = su* a s]vice bas$ on p] pati5t utilization data f :i*ev] s+le ye> dur+ ! cov]$ p]iod 7z def9$ 9 clause 7ii77 ) respect to su* report has ! highe/ p] pati5t utilization ( ,,als-relat$ s]vices1 ev5 if su* s]vice is n payable = a p>ticul> cov]$ ,,als individual because ( ! application ( section #ahfb7;a77#a77;,a7 ) respect to an item or s]vice provid$ to su* individual2 7,,ii7 9 ! case an e/imate is unable to be det]m9$ pursuant to subclause 7,i71 by heal? insurance issu]s & gr\p heal? plans 7z su* t]ms are def9$ 9 section #bgia ( ! ,public ,heal? ,s]vice ,act7 & ,,ma plans "u "p ,c = su* a s]vice1 bas$ on su* data f :i*ev] s+le ye> dur+ ! cov]$ p]iod ) respect to su* report has ! highe/ p] pati5t utilization ( ,,als-relat$ s]vices2 & 7,,iii7 9 ! case an e/imate is unable to be det]m9$ pursuant to subclause 7,,ii71 bas$ on ! recomm5dation ( ! ,specialty ,society ,relative ,value ,scale ,update ,committee ( ! ,am]ican ,m$ical ,association or ! e/imate ( ! ,comptroll] ,g5]al = su* a s]vice4 7ii7 ,def9ition ( cov]$ p]iod ,9 ?is subp>agraph1 ! t]m cov]$ p]iod means-- 7,i7 ) respect to ! fir/ report submitt$ "u ?is subp>agraph1 #bjbb ?r\gh #bjbd2 7,,ii7 ) respect to ! second su* report1 #bjbf ?r\gh #bjbh2 & 7,,iii7 ) respect to ! ?ird report & ea* subsequ5t report1 ! p]iod t beg9s #c ye>s aft] ! cov]$ p]iod = ! prec$+ report4 7#c7 ,paym5t adju/m5ts ,! paym5t sy/em "u ?is subsection %all include a paym5t adju/m5t-- 7,a7 = ea* qualifi$ provid] t is p>ticipat+ 9 at lea/ "o cl9ical trial id5tifi$ on ! cl9icaltrials4gov database 7or any successor database7 ( ! ,national ,in/itutes ( ,heal? to acc\nt = ! increas$ co/ borne by su* a qualifi$ provid] dur+ su* a cl9ical trial2 & 7,b7 = a m$ical s]vice or te*nology :i* is furni%$ z a "p ( ,,als-relat$ s]vices = :i*1 z det]m9$ by ! ,secret>y-- 7i7 paym5t "u ?is subsection = su* s]vice or te*nology 0 n be+ made 9 ! prec$+ ye>2 & 7ii7 ! co/ ( su* s]vice or te*nology is n insignificant 9 relation to ! paym5t am\nt 7z det]m9$ "u ?is subsection7 payable = ,,als-relat$ s]vices4 7#d7 ,me*anism = paym5ts ,= purposes ( mak+ paym5ts = ,,als-relat$ s]vices1 ! ,secret>y %all e/abli% a me*anism "u ! paym5t sy/em "u ?is subsection :i* makes paym5t :5 a qualifi$ provid] submits a claim = paym5t :i* includes1 ) respect to a cov]$ ,,als individual1 an alphanum]ic code issu$ "u ! ,int]national ,classification ( ,diseases1 #aj? ,revision1 ,cl9ical ,modification 7,,icd-#aj-;,,cm7 & its subsequ5t revisions t is = ! treatm5t ( a diagnosis ( amyotrophic lat]al scl]osis4 7#e7 ,no co/ %>+ ,paym5t "u ?is subsection %all be made only on an assignm5t-relat$ basis )\t any co/ %>+4 7#f7 ,qualifi$ provid] ,9 ?is section1 ! t]m qualifi$ provid] means a provid] ( s]vices t-- 7,a7 is capable ( furni%+ ,,als-relat$ s]vices2 & 7,b7 meets requirem5ts z ! ,secret>y prescribes by regulation to implem5t subp>agraph 7,a71 9 consultation )-- 7i7 cov]$ ,,als individuals & _! repres5tatives2 7ii7 physicians :o provide ,,als-relat$ s]vices & _! repres5tatives2 & 7iii7 pr(essional & non-pr(it organizations ) exp]tise 9 amyotrophic lat]al scl]osis4 7#g7 ,implem5tation 7,a7 ,9 g5]al ,except z provid$ "u subp>agraph 7,b71 ! ,secret>y may implem5t ! provisions ( ?is subsection by program in/ruction or o!rwise4 7,b7 ,rulemak+ ,! ,secret>y %all implem5t p>agraph 7#f71 ?r\gh notice & comm5t rulemak+4 4 7c7 ,con=m+ am5dm5ts 7#a7 ,section #ahcc7t7 ,section #ahcc7t7 ( ! ,social ,security ,act 7#db ,u4,s4,c4 #acie7t77 is am5d$ by add+ at ! end ! foll[+ new p>agraph3 7#bc7 ,ensur+ supplem5tal paym5ts = ,,als-relat$ s]vices ,any cov]$ ,,opd s]vice furni%$ to a cov]$ ,,als individual 7z def9$ 9 section #ahfa7nnn77#b77 t is o!rwise payable to a qualifi$ provid] 7z def9$ 9 section #ahcd7;aa77#f77 pursuant to p>agraph 7#d7 %all be payable "u su* p>agraph not)/&+ any paym5t made "u section #ahcd7;aa74 4 7#b7 ,def9ition ( arrangem5ts ,section #ahfa7w77#a7 ( ! ,social ,security ,act 7#db ,u4,s4,c4 #aciex7w77#a77 is am5d$ by ins]t+ qualifi$ provid] 7z def9$ 9 section #ahcd7;aa77#f77 ) respect to ,,als-relat$ s]vices 7z def9$ 9 subsection 7nnn771 be=e or hospice program4 #d4 ,report on *all5ges ) respect to ! adm9i/ration & /aff+ ( amyotrophic lat]al scl]osis cl9ical trials ,n lat] ?an #ij days aft] ! date ( ! enactm5t ( ?is ,act1 ! ,secret>y ( ,heal? & ,human ,s]vices1 act+ ?r\gh ! ,director ( ! ,national ,in/itute ( ,neurological ,disord]s & ,/roke ( ! ,national ,in/itutes ( ,heal?1 %all submit to ,congress & publi% on ! int]net website ( ! ag5cy a report t id5tifies-- 7#a7 any *all5ges ) respect to ! adm9i/ration & /aff+ ( cl9ical trials = ! prev5tion1 diagnosis1 mitigation1 treatm5t1 or cure ( amyotrophic lat]al scl]osis2 7#b7 actions t ! ,director ( ! ,national ,in/itute ( ,neurological ,disord]s & ,/roke c take to address su* *all5ges2 & 7#c7 any legislative recomm5dations 7includ+ reque/s = appropriations7 to fur!r improve ! adm9i/ration ( su* cl9ical trials4