,,ii  #aai? ,,congress  #b;d ,session   
,s4 #edhh  ,,9 ,,! ,,s5ate ,,( ,,!      
,,unit$ ,,/ates  ,septemb] #bc1         
#bjbf,mr4 ,van ,holl5 7= himself1 ,mr4  
,book]1 & ,ms4 ,klobu*>7 introduc$ !    
foll[+ bill2 :i* 0 read twice & ref]r$  
to ! ,committee on ,heal?1 ,education1  
,labor1 & ,p5sions  ,a ,,bill  ,to      
e/abli% a program to address sickle cell
 disease & o!r h]itable                 
hemoglob9opa?ies4  #a4 ,%ort title ,?is 
,act may be cit$ z ! ,sickle ,cell      
,disease ,treatm5t ,c5t]s ,act ( #bjbf4 
#b4 ,e/abli%m5t ( sickle cell disease & 
o!r h]itable hemoglob9opa?ies treatm5t  
c5t]s ,subp>t ,i ( "p ,d ( title ,,iii (
 ! ,public ,heal? ,s]vice ,act 7#db     
,u4,s4,c4 #bed;b et seq47 is am5d$ by   
ins]t+ aft] section #ccj,p 7#db         
,u4,s4,c4 #bed;c-#bb7 ! foll[+3  #ccj,q4
 ,sickle cell disease & o!r h]itable    
hemoglob9opa?ies treatm5t c5t]s  7a7    
,def9itions ,9 ?is section3 7#a7        
,community-bas$ organization ,! t]m     
community-bas$ organization means a     

community-bas$ nonpr(it organization4   
7#b7 ,hub-&-spoke network ,! t]m        
hub-&-spoke network means a sy/em =     
deliv]y ( heal? c>e s]vices-- 7,a7 9 :i*
 a m$ical hub id5tifies & manages a     
m$ical spoke or network ( spokes1 to    
provide compreh5sive sickle cell disease
 c>e2  7,b7 9 :i* su* entities s]v+ z   
spokes-- 7i7 may provide sickle cell    
disease c>e s]vices2 &  7ii7 may        
increase s]vices ov] "t to meet !       
def9ition ( m$ical hubs & connect ) new 
spokes2 &  7,c7 9 :i* ! m$ical          
hub-&-spoke has a p>tn]%ip ) "o or m    
community-bas$ organizations to ext5d   
s]vices & outrea* to ! sickle cell      
disease community4  7#c7 ,m$ical hub ,! 
t]m m$ical hub means a hospital1 cl9ic1 
or univ]sity heal? c5t] t-- 7,a7        
provides compreh5sive sickle cell       
disease treatm5t1 :i* may include m$ical
 & surgical treatm5t1 su* z provision ( 
/em cell transplants & cell & g5e       
!rapies1 an outpati5t treatm5t cl9ic l$ 
by a bo>d-c]tifi$ hematologi/1 infusion 

capability1 teleheal? capability1 g5etic
 c\nsel+1 access to home c>e1 & a       
ph>macy2  7,b7 has exp]i5ce s]v+        
individuals liv+ ) sickle cell disease  
or o!r hemoglob9opa?ies2  7,c7 foll[s   
cons5sus-bas$ cl9ical practice          
guidel9es2 &  7,d7 may be a grantee or  
coord9ate ) grantees ( ! ,sickle ,cell  
,disease ,treatm5t ,demon/ration        
,program "u section #aajf7;b74  7#d7    
,spoke ,! t]m spoke means an entity--   
7,a7 t provides heal? c>e s]vices1      
includ+-- 7i7 a ,f$]ally-qualifi$ heal? 
c5t]1 z def9$ 9 section                 
#aije7l77#b77;,b7 ( ! ,social ,security 
,act2  7ii7 a hospital1 cl9ic1 or       
univ]sity heal? c5t] t provides cl9ical 
c>e & has teleheal? capability2  7iii7 a
 prim>y c>e provid]2  7iv7 an outpati5t 
treatm5t cl9ic2  7v7 an infusion c5t]2  
or  7vi7 o!r heal? c>e provid]s2  7,b7 t
 has at lea/ #a collaborative agreem5t )
 a m$ical hub & "o or m community-bas$  
organization2 &  7,c7 t incorporates a  
community heal? work] into ! c>e team4  

7b7 ,program e/abli%$ ,! ,secret>y %all 
aw>d grants to eligible entities to     
e/abli% treatm5t c5t]s us+ a hub-&-spoke
 framework 7ref]r$ to 9 ?is section z   
,sickle ,cell ,disease ,treatm5t        
,c5t]s71 = ! purposes (-- 7#a7 promot+  
access to coord9at$1 lifelong heal? c>e 
= all pati5ts ) sickle cell disease2    
7#b7 provid+ support to e/abli%         
integrat$ heal? c>e teams = pati5ts )   
sickle cell disease ov] a pati5t's      
lifetime2  7#c7 improv+ ! heal? &       
well-be+ ( *ildr51 y\?1 & adults )      
sickle cell disease2  7#d7 improv+ !    
p$iatric-to-adult heal? c>e transition2 
7#e7 collect+ & contribut+ cl9ical data 
f ,/ates p>ticipat+ 9 ! ,sickle ,cell   
,data ,collection program ( ! ,c5t]s =  
,disease ,control & ,prev5tion1 includ+ 
! collection ( heal? outcomes &         
associat$ complications report$ pursuant
 to su* program2  7#f7 ensur+ t report+ 
) respect to sickle cell disease        
includes report+ on all pati5ts ) sickle
 cell disease1 includ+ migrat+ &        

=eign-born pati5ts2 &  7#g7 conduct+    
significant public heal? aw>5ess &      
education activities ) respect to sickle
 cell disease & sickle cell trait4  7c7 
,eligible entity ,! t]m eligible entity 
means any entity t is compris$ (-- 7#a7 
a hub-&-spoke network t includes-- 7,a7 
a m$ical hub t is a hospital1 cl9ic1 or 
univ]sity heal? c5t]2 &  7,b7 at lea/ #a
 spoke work+ 9 p>tn]%ip ) ! m$ical hub2 
&  7#b7 at lea/ #a community-bas$       
nonpr(it organization work+ 9 a p>tn]%ip
 ) ! hub-&-spoke network4  7d7 ,use (   
funds by eligible entities ,an eligible 
entity %all use grant funds receiv$ "u  
?is section z foll[s3 7#a7 ,m$ical hub  
,! m$ical hub ( ! eligible entity %all  
c>ry out ! foll[+3 7,a7 ,op]at+ &       
adm9i/rat+ co/s ( op]at+ a hub-&-spoke  
framework4  7,b7 ,comply+ )             
cons5sus-bas$ sickle cell disease       
treatm5t guidel9es1 z id5tifi$ by !     
,secret>y4  7,c7 ,educat+ heal? c>e     
provid]s on sickle cell disease treatm5t
 /&>ds & protocols4  7,d7 ,provid+      

integrat$ c>e managem5t1 :i* may        
include-- 7i7 prim>y c>e2  7ii7         
specialty c>e2  7iii7 pa9 managem5t2    
7iv7 m5tal heal? s]vices2  7v7 g5etic   
c\nsel+ s]vices2 &  7vi7 o!r s]vices4   
7,e7 ,coord9at+ specialty c>e s]vices1  
:e!r provid$ at ! m$ical hub or spoke4  
7,f7 ,coord9at+ reproductive heal? &    
family plann+ s]vices = pati5ts ) sickle
 cell disease1 trait1 or o!r            
hemoglob9opa?ies4  7,g7 ,provid+ a      
d$icat$ sickle cell exp]t at ! m$ical   
hub to assi/ 9 ov]see+ c>e ( sickle cell
 disease pati5ts at spokes & to advise !
 community-bas$ organization4  7,h7     
,educat+ heal? c>e provid]s on social   
det]m9ants ( heal? & implicit bias t may
 affect quality ( c>e & life = pati5ts )
 sickle cell disease1 trait1 or o!r     
hemoglob9opa?ies4  7,i7 ,provid+        
teleheal? appo9tm5ts to pati5ts :5      
appropriate & facilitat+ access to      
teleheal? s]vices = sickle cell disease 
pati5ts to ! ext5t feasible4  7,j7      
,implem5t+ p$iatric-to-adult heal? c>e  

transition programs = purposes ( ensur+ 
coord9at$ pati5t graduation f p$iatric  
to adult provid]s = all pati5ts4  7,k7  
,provid+ social "w s]vices or community 
heal? work] s]vices 9 coord9ation ) "o  
or m community-bas$ organizations4  7,l7
 ,collect+ & di/ribut+ data z requir$ by
 ! ,national ,sickle ,cell ,disease     
,coord9at+ ,c5t] e/abli%$ "u subsection 
7f7 or o!rwise requir$ by ! ,secret>y4  
7,m7 ,engag+ 9 quality improvem5t )     
respect to su* /&>ds ( c>e = heal? &    
quality ( life outcomes among sickle    
cell disease pati5ts z ! ,secret>y may  
require4  7#b7 ,community-bas$          
organization ,! community-bas$          
organization ( ! eligible entity %all   
provide or coord9ate s]vices to pati5ts 
& families1 :i* may include ! foll[+3   
7,a7 ,provid+ education & outrea* to    
individuals at-risk = sickle cell trait1
 individuals ) sickle cell trait1 sickle
 cell disease pati5ts1 c>egiv]s1 & heal?
 c>e provid]s4  7,b7 ,provid+ support 9 
address+ social det]m9ants ( heal?1 su* 

z food insecurity1 h\s+ insecurity1 &   
access to education & transportation4   
7,c7 ,provid+ social "w s]vices or      
community heal? work] s]vices 9         
coord9ation ) a m$ical hub or spoke4    
7,d7 ,te/+ or coord9at+ te/+ =          
individuals at-risk = sickle cell trait 
& individuals ) sickle cell trait t     
increase ! likelihood ( hav+ a *ild )   
sickle cell disease1 includ+ ?r\gh      
coord9ation ) a g5etic c\nselor4  7,e7  
,engag+ 9 quality improvem5t ) respect  
to /&>ds ( c>e or heal? & quality ( life
 outcomes among sickle cell disease     
pati5ts1 z id5tifi$ by ! ,secret>y4     
7#c7 ,spoke ,! spokes ( ! eligible      
entity %all provide or coord9ate ea* ( !
 foll[+ s]vices3 7,a7 ,collaborat+ ) a  
m$ical hub to coord9ate & support c>e = 
sickle cell disease pati5ts4  7,b7      
,provid+ /&>ds ( c>e z develop$ 9       
coord9ation ) ! m$ical hub4  7,c7       
,provid+ prim>y c>e s]vices1 g5etic     
c\nsel+1 or specialty c>e4  7,d7        
,provid+ teleheal? appo9tm5ts1 z        

appropriate4  7,e7 ,provid+ m$ical or   
surgical treatm5t4  7,f7 ,implem5t+     
individual c>e plans4  7,g7 ,provid+    
social "w s]vices or community heal?    
work] s]vices 9 coord9ation ) "o or m   
community-bas$ organizations4  7,h7     
,collect+ & di/ribut+ data z requir$ by 
! ,national ,sickle ,cell ,disease      
,coord9at+ ,c5t] e/abli%$ "u subsection 
7f74  7#d7 ,additional uses ( funds ,9  
addition to ! uses ( funds describ$ 9   
p>agraphs 7#a71 7#b71 & 7#c71 an        
eligible entity select$ to receive a    
grant "u ?is section may use funds      
receiv$ ?r\gh ! grant-- 7,a7 to id5tify 
& secure res\rces = ensur+ reimbursem5t 
"u1 = ! ,/ate involv$1 ! ,/ate plan "u  
title ,,xix ( ! ,social ,security ,act  
7or a waiv] ( su* plan71 ,/ate *ild     
heal? plan "u title ,,xxi ( su* ,act 7or
 a waiv] ( su* plan71 & o!r heal?       
programs = ! prev5tion & treatm5t (     
sickle cell disease1 includ+ by work+ ) 
community-bas$ sickle cell disease      
organizations & o!r nonpr(it entities2  

7,b7 to assi/ sickle cell disease       
pati5ts ) access+ appropriate heal?     
insurance1 includ+-- 7i7 ?r\gh ! paym5t 
( insurance premiums & co/-%>+ am\nts1  
to ! ext5t o!rwise p]mitt$ "u ,/ate &   
,f$]al law2  7ii7 by work+ )            
community-bas$ sickle cell disease      
organizations & o!r nonpr(it entities2 &
  7iii7 by help+ sickle cell disease    
pati5ts "k _! rights ) insurance        
programs2  7,c7 to facilitate access to 
teleheal? s]vices = sickle cell disease 
pati5ts & individuals ) sickle cell     
trait1 to ! ext5t feasible2  7,d7 to    
fund evid5ce-bas$ programs t provide    
education to heal? c>e provid]s1 tea*]s 
& s*ool p]sonnel1 & correctional        
in/itutional p]sonnel1 on ! c>e (       
individuals ) sickle cell disease or    
trait 9 heal? c>e sett+s & o!r          
appropriate sett+s1 includ+ s*ools &    
prisons2  7,e7 to develop a sy/em (     
social & community supports1 includ+    
transportation s]vices or travel        
reimbursem5t = sickle cell disease      

pati5ts :o d n h1 b :o ne$ access to1   
9-p]son c>e ) ! ,sickle ,cell ,disease  
,treatm5t ,c5t]s2 &  7,f7 to facilitate 
access to sickle cell trait te/+ &      
g5etic c\nsel+4  7e7 ,application2      
selection  7#a7 ,application ,an        
eligible entity desir+ a grant "u ?is   
section %all submit an application to ! 
,secret>y at su* "t1 9 su* mann]1 &     
conta9+ su* in=mation z ! ,secret>y may 
require1 includ+ a description ( h[ !   
hub-&-spoke entity & community-bas$     
organization w collaborate 9 c>ry+ out !
 activities describ$ 9 subsection 7d74  
7#b7 ,geographic di/ribution ,!         
,secret>y %all aw>d grants "u ?is       
section1 to ! ext5t practicable1 to     
eligible entities1 ) a focus on regions 
:]e a disproportionate numb] ( pati5ts )
 sickle cell disease1 individuals )     
sickle cell trait1 or o!r h]itable      
hemoglob9opa?y pati5ts p] capita reside1
 & to eligible entities nationwide s t  
pati5ts c access m compreh5sive sickle  
cell disease treatm5t s]vices no matt]  

:]e !y reside4  7#c7 ,priorities 9 mak+ 
aw>ds ,9 aw>d+ grants "u ?is section1 ! 
,secret>y may give priority to eligible 
entities t-- 7,a7 include at lea/ "o    
hi/orically ,black college or univ]sity 
7def9$ z a "p ,b in/itution "u section  
#cbb ( ! ,high] ,education ,act ( #aife7
 or m9ority s]v+ in/itution 7def9$ z an 
eligible in/itution "u section #cga (   
su* ,act7 t has a m$ical s*ool1 nurs+   
s*ool1 nurse practition] or physician   
assi/ant program1 g5etic c\nsel+        
program1 or s*ool ( social "w2  7,b7    
s]ve an area ) a high preval5ce ( sickle
 cell disease2 or  7,c7 s]ve a rural    
area4  7f7 ,national sickle cell disease
 coord9at+ c5t]  7#a7 ,9 g5]al ,!       
,secret>y %all e/abli%1 or ent] a       
coop]ative agreem5t ) an entity to      
e/abli%1 ! ,national ,sickle ,cell      
,disease ,coord9at+ ,c5t]1 :i* %all     
coord9ate ! activities conduct$ by      
grantees "u ?is section & c>ry out !    
activities describ$ 9 p>agraph 7#b74    
7#b7 ,duties ,! ,national ,sickle ,cell 

,disease ,coord9at+ ,c5t] %all c>ry out 
ea* ( ! foll[+ activities3 7,a7 ,advise 
! ,secret>y on ! design & implem5tation 
(1 & coord9ate ! infra/ructure (1 !     
,sickle ,cell ,disease ,treatm5t ,c5t]s 
e/abli%$ "u subsection 7b71 includ+ )   
respect to adm9i/rative requirem5ts &   
ensur+ t sickle cell heal? c>e is       
available across ! ,unit$ ,/ates4  7,b7 
,develop a national /rategy = ! practice
 ( equitable c>e1 coord9at$ compreh5sive
 quality c>e1 rese>* & res\rces =       
pati5ts & heal? c>e provid]s1 & treatm5t
 modality options to improve pati5t     
outcomes1 & submit su* national /rategy 
to ! ,secret>y4  7,c7 ,coord9ate )      
,f$]al ag5cies to improve data          
collection ov] ! lifespan ( pati5ts &   
r\t9ely update a national ne$s assessm5t
 to improve c>e = individuals impact$ by
 sickle cell disease4  7,d7 ,coord9ate )
 hub-&-spoke networks1 pati5ts1         
rese>*]s1 & heal? c>e provid]s to ma9ta9
 a compreh5sive sickle cell rese>*1     
treatm5t1 & national c>e /rategy4  7,e7 

,e/abli% a rotat+ panel ( /akehold]s1   
includ+ heal? c>e provid]s1 pati5ts1    
individuals impact$ by sickle cell      
disease1 alli$ heal? pr(essionals1 c>e  
coord9ators1 social work]s1 community   
heal? work]s1 & sickle cell             
community-bas$ & advocacy organizations 
to advise ! ,c5t]1 provide up-to-date   
in=mation & =eca/s on /atus & plans =   
improv+ sickle cell c>e1 treatm5t1 &    
access to treatm5t modalities =         
individuals & families liv+ ) sickle    
cell disease4  7,f7 ,coord9ate & support
 hub-&-spoke frameworks4  7,g7 ,support 
improvem5t 9 pati5t & family-c5t]$ c>e1 
heal? outcomes1 & c>e af=dability by    
improv+ access to c>e4  7,h7 ,provide or
 coord9ate te*nical assi/ance & support 
to heal? c>e provid]s1 family memb]s &  
advocates1 public heal? pr(essionals1   
policymak]s1 & pati5ts t want to improve
 access to quality c>e1 telem$ic9e1     
family plann+1 heal? c>e transition1 &  
family & community engagem5t4  7,i7     
,in=m & educate ! public ab\t sickle    

cell disease1 sickle cell trait1 &      
options = quality c>e4  7g7 ,,cdc sickle
 cell disease data collection program = 
,,scd treatm5t c5t]s ,! ,secret>y1 act+ 
?r\gh ! ,director ( ! ,c5t]s = ,disease 
,control & ,prev5tion1 9 coord9ation ) !
 ,national ,sickle ,cell ,coord9at+     
,c5t] e/abli%$ "u subsection 7f71 %all  
c>ry out ! foll[+3 7#a7 ,collect+1      
coord9at+1 monitor+1 & di/ribut+ data1  
be/ practices1 & f9d+s reg>d+ !         
activities fund$ "u grants made to      
eligible entities "u ?is section4  7#b7 
,collect+ & ma9ta9+ up-to-date data on  
sickle cell disease1 includ+ subtypes z 
applicable1 & _! associat$ heal?        
outcomes & complications1 9 consultation
 ) ,/ates p>ticipat+ 9 ! ,sickle ,cell  
,data ,collection ( ! ,c5t]s = ,disease 
,control & ,prev5tion1 includ+ = !      
purpose (-- 7,a7 improv+ national       
incid5ce & preval5ce data1 includ+ !    
geographic di/ribution ( affect$        
individuals2  7,b7 id5tify+ heal?       
disp>ities impact+ individuals born )   

sickle cell disease1 includ+ subtypes z 
applicable1 & o!r hemoglob9opa?ies2     
7,c7 assess+ ! utilization ( !rapies1   
compreh5sive complication risk scre5+1 &
 /rategies to prev5t complications      
result+ f sickle cell disease & to      
increase quality ( life2 &  7,d7        
evaluat+ ! effects ( g5etic1            
environm5tal1 behavioral1 & o!r risk    
factors t may affect individuals )      
sickle cell disease4  7#c7 ,develop+    
educational mat]ials1 public aw>5ess    
campaigns1 or o!r outrea* programs      
reg>d+ ! inh]itance patt]n1 treatm5t (1 
& prev5tion ( complications f sickle    
cell disease & preval5ce ( sickle cell  
trait1 z well z programs & activities t 
w enhance ! lives ( individuals liv+ )  
sickle cell disease & sickle cell       
disease trait4  7h7 ,reque/ = in=mation 
,n lat] ?an #ahj days aft] ! date (     
enactm5t ( ! ,sickle ,cell ,disease     
,treatm5t ,c5t]s ,act ( #bjbf1 & 9      
advance ( ea* new grant cycle !reaft]1 !
 ,secret>y %all publi% 9 ! ,f$]al       

,regi/] a reque/ = in=mation seek+      
fe$back f /akehold]s on-- 7#a7 be/      
practices ) respect to ! e/abli%m5t &   
implem5tation ( ,sickle ,cell ,disease  
,treatm5t ,c5t]s2 &  7#b7 any o!r       
in=mation t ! ,secret>y may require4    
7i7 ,report to ,congress  7#a7 ,9 g5]al 
,n lat] ?an #c ye>s aft] ! date ( !     
enactm5t ( ! ,sickle ,cell ,disease     
,treatm5t ,c5t]s ,act ( #bjbf1 & e #e   
ye>s !reaft]1 ! ,secret>y %all submit to
 ! ,committee on ,heal?1 ,education1    
,labor1 & ,p5sions & ! ,committee on    
,appropriations ( ! ,s5ate & !          
,committee on ,en]gy & ,comm]ce & !     
,committee on ,appropriations ( ! ,h\se 
( ,repres5tatives a report on ! impact (
 ! ,sickle ,cell ,disease ,treatm5t     
,c5t]s e/abli%$ "u ?is section on heal? 
outcomes = sickle cell disease pati5ts4 
7#b7 ,report elem5ts ,! report describ$ 
9 ?is section %all include-- 7,a7 a     
summ>y & description ( eligible entities
 op]at+ a hub-&-spoke sy/em t are       
receiv+ grant funds "u ?is section2     

7,b7 in=mation ab\t ! specific          
activities support$ by grant funds aw>d$
 "u ?is section ) respect to ea*        
eligible entity2  7,c7 ! numb] ( sickle 
cell disease pati5ts s]v$ by grant      
programs fund$ "u ?is section &         
demographic in=mation ab\t ^? pati5ts1  
includ+ race1 sex1 g5d]1 geographic     
location1 & age2 &  7,d7 in=mation ab\t 
pati5t exp]i5ces ) ! hub-&-spoke sy/em &
 community-bas$ organizations4  7j7     
,supplem5t1 n supplant ,! activities "u 
?is section %all supplem5t1 n supplant1 
o!rwise au?oriz$ activities ( !         
,dep>tm5t ( ,heal? & ,human ,s]vices    
relat+ to sickle cell disease4  7k7     
,au?orization ( appropriations  7#a7 ,9 
g5]al ,to c>ry out ?is section1 !re are 
au?oriz$ to be appropriat$ su* sums z   
may be necess>y = fiscal ye> #bjbg & ea*
 fiscal ye> !reaft]4  7#b7 ,allocation  
to activities ,( ! am\nt appropriat$ "u 
p>agraph 7#a7 = a fiscal ye>-- 7,a7 #gj 
p]c5t may be aw>d$ to eligible entities 
= purposes ( support+ ! activities (    

hub-&-spoke networks t are a "p ( su*   
eligible entities2  7,b7 #bj p]c5t may  
be aw>d$ to eligible entities = purposes
 ( support+ ! activities (              
community-bas$ organizations t are a "p 
( su* eligible entities2  7,c7 #e p]c5t 
may be us$ = ! e/abli%m5t & ma9t5ance ( 
! ,national ,sickle ,cell ,disease      
,coord9at+ ,c5t] describ$ 9 subsection  
7f72 &  7,d7 #e p]c5t may be us$ = !    
activities ( ! ,sickle ,cell ,data      
,collection program ( ! ,c5t]s =        
,disease ,control & ,prev5tion describ$ 
9 subsection 7g74  4