,,ii  #aah? ,,congress  #a/ ,session    
,s4 #cbeh  ,,9 ,,! ,,s5ate ,,( ,,!      
,,unit$ ,,/ates  ,novemb] #h1 #bjbc,mr4 
,coons 7= himself & ,ms4 ,murk[ski7     
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]vices1 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$ical equipm5t1 are crucial =  
manag+ ! complex m$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 an ess5tial "p (  

access to c>e = su* individuals1        
especially ^? liv+ 9 rural areas or c>e 
des]ts4  7#i7 ,teleheal? is "o ( !      
ess5tial managem5t options 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/ances1 (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 & causes ,,als pati5ts to 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 ,"p ,e ( title ,,xviii ( ! ,social
 ,security ,act 7#db ,u4,s4,c4 #acie et4
 seq47 is am5d$ by ins]t+ aft] section  
#ahha;,a ! foll[+ new section3          
#ahha;,b4 ,m$ic>e cov]age ( ,,als-relat$
 s]vices = individuals diagnos$ )       
amyotrophic lat]al scl]osis  7a7 ,9     
g5]al ,9 ! case ( a cov]$ ,,als         
individual1 ! ,secret>y %all e/abli% a  
supplem5tal facility-bas$ paym5t sy/em  
describ$ 9 subsection 7d7 = ,,als-relat$
 s]vices provid$ to su* an individual4  
7b7 ,cov]$ ,,als individual ,= purposes 
( ?is section1 ! 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  7c7 ,,als-,relat$ s]vices ,=
 purposes ( ?is section1 ! t]m          
,,als-relat$ s]vices means items &      
s]vices t are furni%$ to a cov]$ ,,als  
individual 9 an outpati5t sett+ by a    

qualifi$ provid] 7or by o!rs "u         
arrangem5ts ) !m made by ! qualifi$     
provid]7 = ! c>e & treatm5t ( su* an    
individual ) respect to ! progression ( 
amyotrophic lat]al scl]osis4  7d7       
,paym5t sy/em  7#a7 ,au?ority ,!        
,secret>y %all e/abli% a paym5t sy/em "u
 :i* a s+le paym5t det]m9$ 9 accordance 
) ! succe$+ p>agraphs is made to a      
qualifi$ provid] = ,,als-relat$ s]vices 
furni%$ to a cov]$ ,,als individual dur+
 a visit beg9n+ on or aft] ,janu>y #a1  
#bjbe1 = ! purpose ( reimburs+ !        
qualifi$ provid] = furni%+ ,,als-relat$ 
s]vices4  7#b7 ,base paym5t am\nt  7,a7 
#bjbe ,= cov]age ye> #bjbe1 ! ,secret>y 
%all e/abli% a s+le paym5t am\nt =      
,,als-relat$ s]vices equal to #hjj = su*
 s]vices furni%$ = ea* visit dur+ su*   
ye>4  7,b7 #bjbf ,= cov]age ye> #bjbf1 !
 ,secret>y %all e/abli% a s+le paym5t   
am\nt = ,,als-relat$ s]vices furni%$ =  
ea* visit dur+ su* ye> t is ! great] (--
 7i7 ! paym5t am\nt recomm5d$ by !      
,comptroll] ,g5]al 9 ! report describ$ 9

 subp>agraph 7,d72 or  7ii7 ! am\nt     
specifi$ 9 subp>agraph 7,a74  7,c7      
,subsequ5t ye>s ,! ,secret>y %all d ea* 
( ! foll[+3 7i7 ,annual increase ,= ea* 
cov]age ye> beg9n+ ) cov]age ye> #bjbg1 
! ,secret>y %all annually increase !    
paym5t am\nt = ea* visit det]m9$ "u ?is 
p>agraph by an ,,als s]vices m>ket      
basket p]c5tage increase 7z det]m9$ by !
 ,secret>y7 = ! purpose ( reflect+ !    
ye>-to-ye> *anges 9 ! prices ( an       
appropriate mix ( goods & s]vices t are 
,,als-relat$ s]vices4  7ii7             
,ree/abli%m5t ( am\nt ,= ea* cov]age ye>
 beg9n+ ) cov]age ye> #bjbh1 & e #c     
cov]age ye>s !reaft]1 = ! purpose (     
ensur+ t ! range ( ,,als-relat$ s]vices 
is mod]niz$ ov] "t1 ! ,secret>y %all    
ree/abli% a s+le paym5t am\nt =         
,,als-relat$ s]vices furni%$ = ea* visit
 dur+ su* ye> t is ! great] (-- 7,i7 !  
paym5t am\nt recomm5d$ by ! ,comptroll] 
,g5]al 9 ! report describ$ 9 clause 7i7 
or 7ii7 ( subp>agraph 7,e71 z           
applicable2 or  7,,ii7 ! paym5t am\nt   

specifi$ pursuant to clause 7i74  7,d7  
,report by ! comptroll] g5]al ,n lat]   
?an ,janu>y #a1 #bjbe1 ! ,comptroll]    
,g5]al %all1 9 consultation ) qualifi$  
provid]s t are repres5tative ( ! types (
 qualifi$ provid]s eligible = paym5t "u 
?is subsection1 submit to ! ,secret>y ( 
,heal? & ,human ,s]vices 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-- 7i7 "u ?is title = su* a     
s]vice bas$ on p] pati5t utilization    
data f :i*ev] s+le cov]age ye> f #bjba  
?r\gh #bjbc has ! highe/ p] pati5t      
utilization ( ,,als-relat$ s]vices1 ev5 
if su* s]vice is n payable = a p>ticul> 
,,als individual because ( ! application
 ( section #ahfb7;a77#a77;,a7 ) respect 
to an item or s]vice provid$ to su*     
individual2  7ii7 9 ! case t an e/imate 
is unable to be det]m9$ pursuant to     
clause 7i71 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 cov]age ye> f #bjba ?r\gh #bjbc has
 ! highe/ p] pati5t utilization (       
,,als-relat$ s]vices2 &  7iii7 9 ! case 
t an e/imate is unable to be det]m9$    
pursuant to clause 7ii71 bas$ on !      
recomm5dation ( ! ,specialty ,society   
,relative ,value ,scale ,update         
,committee ( ! ,am]ican ,m$ical         
,association or ! e/imate ( !           
,comptroll] ,g5]al = su* a s]vice4  7,e7
 ,subsequ5t reports ,= ! purpose (      
subp>agraph 7,c77ii77,i71 ! ,comptroll] 
,g5]al %all1 n lat] ?an-- 7i7 ,janu>y   
#a1 #bjbh1 submit a report to !         
,secret>y 9 accordance ) subp>agraph    
7,d71 except su* subp>agraph %all be    
appli$ by sub/itut+ #bjbd ?r\gh #bjbf = 
#bjba ?r\gh #bjbc ea* place x appe>s2 & 
7ii7 ,janu>y #a1 #bjca1 & e #c ye>s     
!reaft]1 submit a report to ! ,secret>y 
9 accordance ) subp>agraph 7,d71 aft]   

application ( clause 7i71 except clause 
7i7 %all be appli$ by sub/itut+ cov]age 
ye>s t are #c ye>s lat] ?an ! cov]age   
ye>s previ\sly applicable = reports "u  
clause 7i7 or ?is clause = #bjbd ?r\gh  
#bjbf4  7#c7 ,paym5t adju/m5ts ,! paym5t
 sy/em "u ?is subsection %all include a 
paym5t adju/m5t-- 7,a7 = a qualifi$     
provid] t is p>ticipat+ 9 at lea/ #a    
cl9ical trial id5tifi$ on !             
cl9icaltrials4gov database 7or any      
successor database7 ( ! ,national       
,in/itutes ( ,heal? to acc\nt = !       
increas$ co/s borne by su* a qualifi$   
provid] dur+ su* a cl9ical trial2 &     
7,b7 to acc\nt = a m$ical s]vice or     
te*nology t is furni%$ z a "p (         
,,als-relat$ s]vices = :i*1 z det]m9$ by
 ! ,secret>y-- 7i7 paym5t = ! s]vice or 
te*nology z "p ( ,,als-relat$ s]vices "u
 ?is section 0 n be+ made 9 ! prec$+    
cov]age ye>2 &  7ii7 ! co/ ( ! s]vice or
 te*nology is n insignificant 9 relation
 to ! paym5t am\nt 7z det]m9$ "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 =      
reimbursem5t :i* includes1 ) respect to 
a cov]$ ,,als individual1 an alphanum]ic
 code issu$ "u ! ,int]national          
,classification ( ,diseases1 #aj?       
,revision1 ,cl9ical ,modification       
7commonly ref]r$ to z ,,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]    
def9$ ,9 ?is section1 ! t]m qualifi$    
provid] means a provid] ( s]vices or a  
cl9ic :i*-- 7,a7 is capable ( furni%+   
c>e to a cov]$ ,,als individual1 includ+
 by provid+ su* s]vices z 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$ical equipm5t2 &  7,b7 meets  
su* requirem5ts z ! ,secret>y may       
prescribe by regulation to implem5t     
subp>agraph 7,a71 9 consultation )-- 7i7
 cov]$ ,,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  7e7       
,cl>ification ,paym5t "u subsection 7d7 
%all be 9 addition to1 & %all n         
supplant1 any paym5t t w\ld be o!rwise  
made to a provid] ( s]vices1 physician1 
practition]1 suppli]1 or laboratory "u  
any o!r provision ( ?is title = an item 
or s]vice furni%$ to a cov]$ ,,als      
individual4  7f7 ,implem5tation  7#a7 ,9
 g5]al ,except z provid$ "u p>agraph    
7#b71 ! ,secret>y may implem5t !        
provisions ( ?is section by program     

in/ruction or o!rwise4  7#b7 ,rulemak+  
,! ,secret>y %all implem5t subsections  
7c7 & 7d77#f7 ?r\gh notice & comm5t     
rulemak+4  7g7 ,fund+ ,= purposes (     
c>ry+ out ?is section & subject to      
subsection 7e71 paym5t "u ?is section   
%all be made f ! ,f$]al ,supplem5t>y    
,m$ical ,insurance ,tru/ ,fund "u       
section #ahda or f ! ,f$]al ,hospital   
,insurance ,tru/ ,fund "u section #ahag4
  4  7b7 ,con=m+ am5dm5ts  7#a7 ,ensur+ 
supplem5tal paym5ts = ,,als-relat$      
s]vices ,section #ahcc7t7 ( ! ,social   
,security ,act 7#db ,u4,s4,c4 #acie7t7  
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     
#ahha;,b7b77 t is o!rwise payable to a  
qualifi$ provid] 7z def9$ 9 section     
#ahha;,b7d77#f77 pursuant to p>agraph   
7#d7 %all be payable "u su* p>agraph    
not)/&+ any paym5t made "u section      
#ahha;,b7d74  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     
#ahha;,b7d77#f77 ) respect to           
,,als-relat$ s]vices 7z def9$ 9 section 
#ahha;,b7c771 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 & ,/roke1 %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 w take to address su* *all5ges2 &
  7#c7 any legislative recomm5dations   

7includ+ reque/s = appropriations7 to   
fur!r improve ! adm9i/ration ( su*      
cl9ical trials4