,,ii  #aag? ,,congress  #a/ ,session    
,s4 #cchi  ,,9 ,,! ,,s5ate ,,( ,,!      
,,unit$ ,,/ates  ,decemb] #ad1 #bjba,mr4
 ,book] 7= himself & ,mr4 ,scott ( ,s\? 
,c>ol9a7 introduc$ ! foll[+ bill2 :i* 0 
read twice & ref]r$ to ! ,committee on  
,f9ance  ,a ,,bill  ,to am5d title ,,xix
 ( ! ,social ,security ,act to e/abli% a
 demon/ration project to improve        
outpati5t cl9ical c>e = individuals )   
sickle cell disease4  #a4 ,%ort title   
,?is ,act may be cit$ z ! ,sickle ,cell 
,disease ,compreh5sive ,c>e ,act4  #b4  
,m$icaid demon/ration project to improve
 outpati5t cl9ical c>e = individuals )  
sickle cell disease ,section #aijc ( !  
,social ,security ,act 7#db ,u4,s4,c4   
#acif;b7 is am5d$ by add+ at ! end !    
foll[+ new subsection3  7cc7            
,demon/ration project ,to improve       
outpati5t cl9ical c>e = individuals )   
sickle cell disease  7#a7 ,9 g5]al      
,not)/&+ section #aijb7;a77#a7 7relat+  
to /atewid5ess71 section                
#aijb7;a77#aj77;,b7 7relat+ to          

comp>ability71 & any o!r provision ( ?is
 title = :i* ! ,secret>y det]m9es x is  
necess>y to waive 9 ord] to implem5t ?is
 subsection1 n lat] ?an ! date t is #a  
ye> aft] ! date ( ! enactm5t ( ?is      
subsection1 ! ,secret>y %all1 9         
consultation1 z appropriate1 ) !        
,adm9i/rator ( ! ,heal? ,res\rces &     
,s]vices ,adm9i/ration1 ! ,director ( ! 
,ag5cy = ,heal?c>e ,rese>* & ,quality1 &
 ! ,deputy ,assi/ant ,secret>y =        
,m9ority ,heal?1 conduct a #e-ye>       
demon/ration project 7ref]r$ to 9 ?is   
subsection z ! demon/ration project7 = !
 purpose describ$ 9 p>agraph 7#b7 "u :i*
 ! ,secret>y %all-- 7,a7 = ! fir/       
#ah-mon? p]iod ( su* project1 aw>d      
plann+ grants describ$ 9 p>agraph 7#c72 
&  7,b7 = ! rema9+ #db-mon? p]iod ( su* 
project1 provide paym5ts to ea* ,/ate   
select$ "u p>agraph 7#d7 9 accordance ) 
p>agraph 7#e74  7#b7 ,purpose ,! purpose
 describ$ 9 ?is p>agraph is = ea* ,/ate 
t p>ticipates 9 ! demon/ration project  
to improve access to high-quality       

outpati5t c>e = individuals receiv+     
s]vices "u ! ,/ate plan 7or waiv] ( su* 
plan7 :o are liv+ ) sickle cell disease 
7) a focus on1 b n limit$ to1 "y adults 
& pregnant wom571 to improve cl9ical1   
m5tal heal?1 ancill>y1 & support        
s]vices1 & to r$uce ov]all & long-t]m   
co/s1 z appropriate1 to ! ,/ate         
associat$ ) treat+ individuals ) sickle 
cell disease "u ! ,/ate plan 7or waiv] (
 su* plan7 ?r\gh ! foll[+ activities3   
7,a7 ,support+ ! creation or augm5tation
 ( multi-discipl9>y c>e teams t include 
! physicians ne$$ to adequately treat an
 individual = sickle cell disease & its 
complications1 z det]m9$ by ! ,secret>y 
9 consultation ) ! appropriate          
/akehold]s1 includ+ organizations       
repres5t+ sickle cell disease pati5ts1  
hematologi/s1 & o!r speciali/s 9 sickle 
cell disease c>e & treatm5t4  7,b7      
,conduct+ an assessm5t ( ! b>ri]s to c>e
 exp]i5c$ by individuals ) sickle cell  
disease enroll$ "u ! ,/ate plan 7or     
waiv] ( su* plan71 tak+ into acc\nt     

social1 demographic1 & economic factors1
 geography1 provid] %ortages1 & o!r     
issues contribut+ to heal? inequities1 z
 det]m9$ by ! ,secret>y 9 consultation )
 relevant /akehold]s1 includ+           
organizations repres5t+ sickle cell     
disease pati5ts1 hematologi/s1 & o!r    
speciali/s 9 sickle cell disease c>e &  
treatm5t4  7,c7 ,id5tify+ be/ practices 
= improv+ heal? equity = individuals )  
sickle cell disease enroll$ "u ! ,/ate  
plan 7or waiv] ( su* plan7 :i* take into
 acc\nt ! results ( ! assessm5t describ$
 9 subp>agraph 7,b71 & communicat+ su*  
be/ practices ?r\gh ! provision (       
education1 tra9+1 & te*nical assi/ance  
to provid]s p>ticipat+ "u ! ,/ate plan  
7or waiv] ( su* plan71 includ+ to c>e   
teams describ$ 9 subp>agraph 7,a74  7,d7
 ,exp&+ exp]tise ( provid]s p>ticipat+  
"u ! ,/ate plan 7or waiv] ( su* plan7 on
 c>e = sickle cell disease by dissem9at+
 cl9ical practice guidel9es = sickle    
cell disease & provid+ education1 tra9+1
 & te*nical assi/ance ) respect to su*  

guidel9es to su* provid]s4  7,e7 ,ensur+
 t sickle cell disease pati5ts enroll$  
"u ! ,/ate plan 7or waiv] ( su* plan7   
are gett+ prim>y & prev5tive s]vices 9  
an appropriate outpati5t sett+ or ?r\gh 
teleheal? s]vices1 z appropriate1       
includ+ by provid+ additional           
reimbursem5t = c>e coord9ators1         
community heal? work]s1 & o!r           
non-traditional s]vice provid]s4  7,f7  
,develop+ an individualiz$1             
compreh5sive1 pati5t-c5t]$ c>e plan =   
individuals ) sickle cell disease t     
accommodates pati5t pref]5ces 9 a       
culturally & l+ui/ically appropriate    
mann]4  7,g7 ,ensur+ t sickle cell      
disease pati5ts enroll$ "u ! ,/ate plan 
7or waiv] ( su* plan7 are provid$ )     
coord9ation (1 & access to1 ! foll[+    
s]vices1 z det]m9$ to be cl9ically      
appropriate3 7i7 ,treatm5ts &           
m$ications1 includ+ *ronic & ex*ange    
transfusions & disease-modify+          
m$ications4  7ii7 ,appropriate diagno/ic
 te/+ su* z magnetic resonance imag+4   

7iii7 ,pa9 managem5t treatm5t &         
palliative c>e4  7iv7 ,s]vices provid$  
by subspeciali/s su* z ob/etricians &   
gynecologi/s1 reproductive heal?        
speciali/s1 urologi/s1 oph?almologi/s1  
neurologi/s1 nephrologi/s1 psy*ologi/s1 
or?op$i/s1 c>diologi/s1 & pulmonologi/s4
  7v7 ,supportive cl9ical s]vices1      
includ+ vision & d5tal c>e4  7vi7 ,m5tal
 heal? s]vices & sub/ance use disord]   
treatm5t4  7vii7 ,transportation to     
m$ical s]vices & social support s]vices 
& ref]rals to community-bas$            
organizations4  7viii7 ,any o!r !rapies 
approv$ by ! ,food & ,drug ,adm9i/ration
 = ! treatm5t ( sickle cell disease or  
its complications4  7ix7 ,any o!r       
s]vices deem$ appropriate = ! treatm5t (
 sickle cell disease or its             
complications by ! ,/ate4  7,h7 ,provid+
 o!r s]vices or tak+ o!r actions deem$  
necess>y to improve treatm5t ( sickle   
cell disease "u ! ,/ate plan 7or waiv] (
 su* plan71 z det]m9$ by ! ,secret>y 9  
coord9ation ) relevant /akehold]s1      

includ+ organizations repres5t+ sickle  
cell disease pati5ts1 hematologi/s1 &   
o!r speciali/s 9 sickle cell disease c>e
 & treatm5t4  7#c7 ,plann+ grants  7,a7 
,9 g5]al ,! ,secret>y %all aw>d plann+  
grants to at lea/ #aj ,/ates select$ 9  
accordance ) subp>agraph 7,b7 = purposes
 ( prep>+ an application describ$ 9     
p>agraph 7#d77;,c7 & c>ry+ out !        
activities describ$ 9 subp>agraph 7,c74 
7,b7 ,selection ,9 select+ ,/ates =     
purposes ( ?is p>agraph1 ! ,secret>y    
%all-- 7i7 select ,/ates t h a ,/ate    
plan approv$ "u ?is title2  7ii7 give   
priority to ,/ates t h p>ticipat$ 9 !   
sickle cell disease surveillance data   
collection program ( ! ,c5t]s = ,disease
 ,control & ,prev5tion or precursors to 
su* program2 &  7iii7 select ,/ates 9 a 
mann] to recognize ,/ates ) a high]     
preval5ce ( sickle cell disease pati5ts 
t c\ld be rea*$ ?r\gh ?is demon/ration  
project4  7,c7 ,activities describ$     
,activities describ$ 9 ?is subp>agraph  
are1 ) respect to a ,/ate1 ea* ( !      

foll[+3 7i7 ,activities t support an    
assessm5t ( ! treatm5t ne$s & gaps 9 c>e
 9 ! ,/ate = individuals ) sickle cell  
disease 9 ord] to improve ! network (   
provid]s t treat ?is population1 includ+
 ! foll[+3 7,i7 ,an e/imate ( ! numb] ( 
individuals enroll$ "u ! ,/ate plan 7or 
a waiv] ( su* plan7 :o h sickle cell    
disease4  7,,ii7 ,in=mation on !        
capacity ( provid]s ) ! k ne$$ to treat 
sickle cell disease & ! complications ( 
sickle cell disease1 includ+ in=mation  
on provid]s :o provide su* s]vices & _! 
p>ticipation "u ! ,/ate plan 7or waiv] (
 su* plan74  7,,iii7 ,in=mation on !    
gaps 9 c>e = treatm5t ( individuals )   
sickle cell disease "u ! ,/ate plan 7or 
waiv] ( su* plan71 includ+ in=mation    
bas$ on ! assessm5ts describ$ 9         
subclauses 7,i7 & 7,,ii74  7ii7         
,activities t1 tak+ into acc\nt !       
results ( ! assessm5t describ$ 9 clause 
7i71 support ! developm5t ( ,/ate       
infra/ructure to recruit prospective    
provid]s & provide tra9+ & te*nical     

assi/ance to provid]s ) respect to      
treatm5t ( sickle cell disease "u !     
,/ate plan 7or a waiv] ( su* plan74     
7,d7 ,fund+ ,= ! purpose ( mak+ grants  
"u ?is p>agraph1 !re is appropriat$ to !
 ,secret>y1 out ( any funds 9 !         
,treasury n o!rwise appropriat$1        
#be1jjj1jjj1 to rema9 available until   
exp5d$4  7#d7 ,po/-plann+ grant /ates   
7,a7 ,9 g5]al ,! ,secret>y %all1 )      
respect to ! rema9+ #db-mon? p]iod ( !  
demon/ration project conduct$ "u        
p>agraph 7#a71 select up to #aj1 b n    
less ?an #e ,/ates 9 accordance )       
subp>agraph 7,b7 = purposes ( c>ry+ out 
! activities describ$ 9 p>agraph 7#b7 & 
receiv+ paym5ts 9 accordance ) p>agraph 
7#e74 ,! ,secret>y may select all ,/ates
 t receiv$ a plann+ grant 9 p>agraph    
7#c74  7,b7 ,selection ,9 select+ ,/ates
 = purposes ( ?is p>agraph1 ! ,secret>y 
%all-- 7i7 select ,/ates t receiv$ a    
plann+ grant "u p>agraph 7#c7 & h       
successfully complet$ ! activities      
describ$ 9 subp>agraph 7,c7 ( su*       

p>agraph2  7ii7 select ,/ates t submit  
to ! ,secret>y an application 9         
accordance ) ! requirem5ts 9 subp>agraph
 7,c72 &  7iii7 select ,/ates 9 a mann] 
consi/5t ) rea*+ z _m sickle cell       
disease pati5ts z possible ?r\gh !      
demon/ration project4  7,c7             
,applications  7i7 ,9 g5]al ,a ,/ate    
seek+ to be select$ = purposes ( ?is    
p>agraph %all submit to ! ,secret>y1 at 
su* "t & 9 su* =m & mann] z ! ,secret>y 
requires1 an application t includes su* 
in=mation z ! ,secret>y may require1 9  
addition to ! foll[+3 7,i7 ,a propos$   
process = c>ry+ out ! activities        
describ$ 9 p>agraph 7#b74  7,,ii7 ,a    
review ( reimbursem5t me?odologies & o!r
 policies relat$ to sickle cell disease 
treatm5t "u ! ,/ate plan 7or waiv] ( su*
 plan7 t may create b>ri]s to increas+ !
 numb] ( provid]s deliv]+ su* s]vices4  
7,,iii7 ,! developm5t ( a plan1 tak+    
into acc\nt activities c>ri$ out "u     
p>agraph 7#c77;,c77ii71 t w result 9    
long-t]m & su/a9able provid] networks "u

 ! ,/ate plan 7or waiv] ( su* plan7 =   
sickle cell disease4  7,,iv7 ,a propos$ 
process = report+ ! in=mation requir$ "u
 p>agraph 7#f77;,a74  7,v7 ,! expect$   
f9ancial impact ( ! demon/ration project
 "u ?is subsection on ! ,/ate4  7,,vi7  
,a description ( all fund+ s\rces       
available to ! ,/ate to provide treatm5t
 = sickle cell disease "u ! ,/ate plan  
7or waiv] ( su* plan7 9 ! ,/ate4        
7,,vii7 ,a prelim9>y plan = h[ ! ,/ate w
 su/a9 any increase 9 ! capacity (      
provid]s to deliv] treatm5t = sickle    
cell disease & ! complications ( sickle 
cell disease result+ f ! demon/ration   
project "u ?is subsection aft] !        
t]m9ation ( su* demon/ration project4   
7,,viii7 ,a description ( h[ ! ,/ate w  
coord9ate ! goals ( ! demon/ration      
project ) any waiv] grant$ 7or submitt$ 
by ! ,/ate & p5d+7 pursuant to section  
#aaae = ! deliv]y ( s]vices to treat    
sickle cell disease "u ! ,/ate plan1 z  
applicable4  7ii7 ,consultation ,9      
complet+ an application "u clause 7i71 a

 ,/ate %all consult ) relevant          
/akehold]s1 includ+ ,m$icaid manag$ c>e 
plans1 hematologi/s & o!r sickle cell   
disease speciali/s1 & ,m$icaid          
b5efici>ies & sickle cell disease       
advocates1 & include 9 su* application a
 description ( su* consultation4  7#e7  
,paym5ts  7,a7 ,enhanc$ ,,fmap = sickle 
cell disease treatm5t ,not)/&+ section  
#aije7;b71 = ea* qu>t] occurr+ dur+ !   
p]iod = :i* ! demon/ration project is   
conduct$ 7aft] ! fir/ #ah mon?s ( su*   
p]iod71 ! ,f$]al m$ical assi/ance       
p]c5tage = ea* ,/ate select$ "u p>agraph
 7#d7 ) respect to am\nts exp5d$ by !   
,/ate = m$ical assi/ance = m$ically     
necess>y s]vices to treat sickle cell   
disease %all be equal to #ajj p]c5t4    
7,b7 ,case managem5t s]vices = sickle   
cell disease pati5ts  7i7 ,9 g5]al ,dur+
 ! p]iod = :i* ! demon/ration project is
 conduct$ 7aft] ! fir/ #ah mon?s ( su*  
p]iod71 a ,/ate select$ "u p>agraph 7#d7
 may provide a multi-discipl9>y c>e team
 describ$ 9 p>agraph 7#b77;,a7 ) paym5ts

 = ! provision ( case managem5t & c>e   
coord9ation s]vices to an individual )  
sickle cell disease :o is eligible "u ! 
,/ate plan 7or waiv] ( su* plan74       
,paym5ts made to su* a team %all be     
treat$ z m$ical assi/ance = purposes (  
section #aijc7;a7 except t ! ,f$]al     
m$ical assi/ance p]c5tage applicable to 
su* paym5ts %all be equal to #ajj p]c5t4
  7ii7 ,me?odology ,a ,/ate t elects to 
make case managem5t & c>e coord9ation   
paym5ts to a multi-discipl9>y c>e team  
"u ?is subp>agraph %all specify 9 a     
,/ate's application "u p>agraph 7#d7 !  
me?odology ! ,/ate w use = det]m9+      
paym5t = ! provision ( su* s]vices4 ,su*
 me?odology %all n be limit$ to a       
p]-memb]-p]-mon? basis & may provide 7z 
propos$ by ! ,/ate & subject to approval
 by ! ,secret>y7 = alt]nate models (    
paym5t4  7#f7 ,reports  7,a7 ,/ate      
reports ,a ,/ate receiv+ paym5ts "u     
p>agraph 7#e7 %all1 = ! p]iod ( !       
demon/ration project "u ?is subsection1 
submit to ! ,secret>y a qu>t]ly report1 

) respect to exp5ditures = treatm5t (   
sickle cell disease & complications (   
sickle cell disease = :i* paym5t is made
 to ! ,/ate "u ?is subsection1 on !     
foll[+3 7i7 ,! specific activities )    
respect to :i* paym5t "u ?is subsection 
0 provid$4  7ii7 ,! numb] ( individuals 
enroll$ "u ! ,/ate plan 7or a waiv] (   
su* plan7 :o receiv$ treatm5t = sickle  
cell disease or complications relat$ to 
sickle cell disease "u ! demon/ration   
project comp>$ to ! e/imat$ numb] ( su* 
individuals :o w\ld h o!rwise receiv$   
su* s]vices 9 ! abs5ce ( su*            
demon/ration project4  7iii7 ,! numb] ( 
individuals enroll$ "u ! ,/ate plan 7or 
waiv] ( su* plan7 :o receiv$ treatm5t = 
sickle cell disease or complications    
relat$ to sickle cell disease "u !      
demon/ration project :o utiliz$ !       
s]vices beyond cl9ical sickle cell      
disease s]vices1 includ+ m5tal heal?1   
ancill>y & support s]vices & ! impact on
 _! heal? outcomes1 includ+ em]g5cy     
dep>tm5t visits & inpati5t hospital     

/ays4  7iv7 ,! r$uctions 9 inpati5t     
days1 r$uctions 9 em]g5cy dep>tm5t      
visits1 & r$uctions 9 ! total co/ ( c>e 
comp>$ to ^! metrics be=e ! demon/ration
 project 0 implem5t$4  7v7 ,o!r matt]s z
 det]m9$ by ! ,secret>y4  7,b7 ,,cms    
reports  7i7 ,initial report ,n lat] ?an
 #ah mon?s aft] ! date ( enactm5t ( ?is 
subsection1 ! ,adm9i/rator ( ! ,c5t]s = 
,m$ic>e  ,m$icaid ,s]vices1 9           
consultation ) ! ,adm9i/rator ( ! ,heal?
 ,res\rces & ,s]vices ,adm9i/ration1    
%all submit to ,congress an initial     
report on-- 7,i7 ! ,/ates aw>d$ plann+  
grants "u p>agraph 7#c72  7,,ii7 !      
crit]ia us$ 9 su* selection2 &  7,,iii7 
! activities c>ri$ out by su* ,/ates "u 
su* plann+ grants4  7ii7 ,int]im report 
,n lat] ?an #c ye>s aft] ! date (       
enactm5t ( ?is subsection1 !            
,adm9i/rator ( ! ,c5t]s = ,m$ic>e       
,m$icaid ,s]vices %all1 submit to       
,congress an int]im report-- 7,i7 on    
activities c>ri$ out "u ! demon/ration  
project "u ?is subsection2  7,,ii7 on ! 

ext5t to :i* ,/ates select$ "u p>agraph 
7#d7 h a*iev$ ! activities submitt$ 9 _!
 applications "u subp>agraph 7,c7 ( su* 
p>agraph2  7,,iii7 ) a description ( !  
/r5g?s & limitations ( su* demon/ration 
project2 &  7,,iv7 ) a plan = !         
su/a9ability ( su* project4  7iii7 ,f9al
 report ,n lat] ?an #a ye> foll[+ !     
implem5tation ( ! demon/ration project1 
! ,secret>y %all submit to ,congress &  
make public a f9al report-- 7,i7 provid+
 updates on ! matt]s report$ 9 ! int]im 
report "u clause 7ii72  7,,ii7 includ+ a
 description ( any *anges made ) respect
 to ! demon/ration project "u ?is       
subsection aft] ! submission ( su*      
int]im report2 &  7,,iii7 evaluat+ su*  
demon/ration project4  7,c7 ,report on  
exp]i5ces ( ,/ates ,n lat] ?an #c ye>s  
aft] ! date ( ! enactm5t ( ?is          
subsection1 ! ,adm9i/rator ( ! ,c5t]s = 
,m$ic>e  ,m$icaid ,s]vices1 9           
consultation ) ! ,director ( ! ,ag5cy = 
,heal?c>e ,rese>* & ,quality1 %all      
submit to ,congress a summ>y on !       

exp]i5ces ( ,/ates aw>d$ plann+ grants  
"u p>agraph 7#c7 & ,/ates select$ "u    
p>agraph 7#d74  7#g7 ,data %>+ & be/    
practices ,dur+ ! p]iod ( ! demon/ration
 project "u ?is subsection1 ! ,secret>y 
%all1 9 collaboration ) ,/ates select$  
"u p>agraph 7#d71 facilitate in=mation  
%>+ & ! ex*ange ( id5tifi$ be/ practices
 betwe5-- 7,a7 provid]s :o treat sickle 
cell disease2 &  7,b7 ,/ates select$ "u 
p>agraph 7#d7 & ,/ates t 7 n s select$4 
7#h7 ,,cms fund+ ,!re is appropriat$1   
out ( any funds 9 ! ,treasury n o!rwise 
appropriat$1 #ej1jjj1jjj to ! ,c5t]s =  
,m$ic>e  ,m$icaid ,s]vices = purposes ( 
implem5t+ ?is subsection1 includ+       
complet+ ! reports to ,congress requir$ 
"u ?is ,act4 ,su* am\nt %all rema9      
available until exp5d$4  4