,,ii  #aag? ,,congress  #b;d ,session   
,s4 #dhff  ,,9 ,,! ,,s5ate ,,( ,,!      
,,unit$ ,,/ates  ,septemb] #ae1 #bjbb   
,mr4 ,van ,holl5 7= himself & ,mr4      
,book]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 (  
#bjbb4  #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$ organization work+ 9     

p>tn]%ip "u at lea/ "o collaborative    
agreem5t ) a m$ical hub & spoke network4
  7#b7 ,eligible entity ,! t]m eligible 
entity means any entity t is a sickle   
cell disease treatm5t hub-&-spoke       
network t is compris$ (-- 7,a7 a        
hub-&-spoke network t includes--  7i7 a 
m$ical hub t is a hospital1 cl9ic1 or   
univ]sity heal? c5t]2 &  7ii7 at lea/ #a
 spoke work+ 9 p>tn]%ip ) ! m$ical hub2 
&  7,b7 at lea/ #a community-bas$       
organization work+ 9 a p>tn]%ip ) !     
hub-&-spoke network1 or ! m$ical hub or 
at lea/ "o spoke ( su* network4  7#c7   
,hub-&-spoke network ,! t]m hub-&-spoke 
network means a framework = deliv]y (   
heal? c>e s]vices--  7,a7 recomm5d$ by !
 ,national ,academies ( ,sci5ces1       
,eng9e]+1 & ,m$ic9e 9 its #bjbj report  
titl$1 ,address+ ,sickle ,cell ,disease3
 ,a ,/rategic ,plan & ,bluepr9t =       
,action2  7,b7 9 :i* a m$ical hub       
id5tifies & manages a m$ical spoke or   
network ( spokes1 or o!r subsidi>y      
entities1 to provide compreh5sive sickle

 cell disease c>e2  7,c7 9 :i* su*      
subsidi>y entities s]v+ z spokes-- 7i7  
may initially provide limit$ sickle cell
 disease c>e s]vices2 &  7ii7 may evolve
 into hubs & connect ) new spokes2 &    
7,d7 9 :i* ! m$ical hub & spoke         
collaborate ) a community-bas$          
organization to ext5d s]vices & outrea* 
to ! sickle cell disease community4     
7#d7 ,m$ical hub ,! t]m m$ical hub means
 a hospital1 cl9ic1 or univ]sity heal?  
c5t] t-- 7,a7 has an outpati5t treatm5t 
cl9ic1 infusion capabilities1 teleheal? 
capability1 & exp]i5ce s]v+ individuals 
liv+ ) sickle cell disease2 &  7,b7     
foll[s widely acceptable cl9ical        
practice guidel9es4  7#e7 ,spoke ,! t]m 
spoke means an entity--  7,a7 t is-- 7i7
 a ,f$]ally-qualifi$ heal? c5t]1 z def9$
 9 section #ahfa7;aa7 ( ! ,social       
,security ,act2  7ii7 a                 
,f$]ally-qualifi$ heal? c5t]1 z def9$ 9 
section #aije7l77#b77;,b7 ( ! ,social   
,security ,act2 or  7iii7 a hospital1   
cl9ic1 or univ]sity heal? c5t] t        

provides cl9ical c>e & has teleheal?    
capability2  7,b7 t has at lea/ #a      
collaborative agreem5t ) a m$ical hub & 
a community-bas$ 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$ longitud9al heal? c>e = all   
pati5ts ) sickle cell disease &         
individuals ) sickle cell trait2  7#b7  
provid+ support to e/abli% integrat$    
heal? c>e teams = pati5ts ) sickle cell 
disease2  7#c7 improv+ ! heal? &        
well-be+ ( *ildr51 y\?1 & adults )      
sickle cell disease2  7#d7 increas+     
report+ on quality & o!r public heal?   
measures ) respect to sickle cell       
disease treatm5t2  7#e7 accurately      
compil+ all applicable ,/ate sickle cell
 newborn scre5+ data2  7#f7 integrat+   

sickle cell newborn scre5+ data )       
longitud9al foll[-up data on sickle cell
 disease heal? outcomes & associat$     
complications1 9 collaboration ) !      
,sickle ,cell ,disease ,data ,collection
 ,program ( ! ,c5t]s = ,disease ,control
 & ,prev5tion2 &  7#g7 conduct+         
significant public heal? activities )   
respect to sickle cell disease4  7c7    
,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+ ) 
publi%$ sickle cell disease treatm5t    
guidel9es1 z id5tifi$ by ! ,secret>y4   
7,c7 ,educat+ 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
 c>e managem5t2 &  7iii7 m5tal heal?    
s]vices4  7,e7 ,coord9at+ specialty c>e 
s]vices1 :e!r provid$ at ! m$ical hub or

 spoke4  7,f7 ,coord9at+ reproductive   
heal? s]vices = sickle cell disease     
pati5ts4  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+ 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      
,provid+ m$ical & surgical treatm5t to  
sickle cell disease pati5ts4  7,k7      
,implem5t+ p$iatric-to-adult heal? c>e  
transition programs = purposes ( ensur+ 
coord9at$ pati5t graduation f p$iatric  
to adult provid]s = all pati5ts4  7,l7  
,provid+ social "w s]vices 9 coord9ation
 ) a community-bas$ organization4  7,m7 
,collect+ & di/ribut+ data z requir$ by 

! ,national ,sickle ,cell ,disease      
,coord9at+ ,c5t] e/abli%$ "u ?is section
 or o!rwise requir$ by ! ,director ( !  
,c5t]s = ,disease ,control & ,prev5tion4
  7,n7 ,engag+ 9 quality improvem5t )   
respect to /&>ds ( c>e = heal? & quality
 ( life outcomes among sickle cell      
disease pati5ts z id5tifi$ by !         
,secret>y4  7#b7 ,community-bas$        
organization ,! community-bas$          
organization ( ! eligible entity %all   
provide or coord9ate ea* ( ! foll[+3    
7,a7 ,provid+ education & outrea* to    
sickle cell disease pati5ts1 c>egiv]s1 &
 heal? provid]s4  7,b7 ,provid+ support 
9 address+ social det]m9ants ( heal?4   
7,c7 ,provid+ social "w s]vices 9       
coord9ation ) a m$ical hub or spoke4    
7,d7 ,te/+ or coord9at+ te/+ = sickle   
cell conditions & = c>ri] /ates t put a 
family at risk = hav+ a *ild ) sickle   
cell disease4  7,e7 ,engag+ 9 quality   
improvem5t ) respect to /&>ds ( c>e or  
heal? & quality ( life outcomes among   
sickle cell disease pati5ts1 z id5tifi$ 

by ! ,secret>y4  7#c7 ,spoke ,! spokes (
 ! eligible entity %all provide or      
coord9ate ea* ( ! foll[+ s]vices3  7,a7 
,collaborat+ ) a m$ical hub to coord9ate
 & support c>e = sickle cell disease    
pati5ts4  7,b7 ,provid+ ! approv$ /&>ds 
( c>e = su* pati5ts4  7,c7 ,provid+     
prim>y c>e s]vices or specialty c>e4    
7,d7 ,provid+ teleheal? appo9tm5ts1 z   
appropriate4  7,e7 ,provid+ m$ical or   
surgical treatm5t4  7,f7 ,implem5t+     
individual c>e plans4  7,g7 ,provid+    
social "w s]vices 9 coord9ation ) a     
community-bas$ organization4  7,h7      
,collect+ & di/ribut+ data requir$ by ! 
,national ,sickle ,cell ,disease        
,coord9at+ ,c5t] e/abli%$ "u ?is section
 & ! ,sickle ,cell ,disease ,data       
,collection ,program ( ! ,c5t]s =       
,disease ,control & ,prev5tion4  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? c>e 
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 to ! ext5t feasible2  7,d7 to   
fund evid5ce-bas$ programs t provide    

education to tea*]s & s*ool p]sonnel1   
correctional in/itution p]sonnel1 &     
heal? c>e pr(essionals on ! c>e (       
individuals ) sickle cell disease 9     
heal? c>e sett+s & o!r appropriate      
sett+s1 includ+ s*ools & prisons2  7,e7 
to (f] transportation s]vices = sickle  
cell disease pati5ts :o d n h1 b :o ne$ 
access to 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  7d7             
,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 7c74 ,su* an      
application may be submitt$ on behalf ( 
! eligible entity by a hub-&-spoke      
network or by ! community-bas$          

organization4  7#b7 ,geographic         
di/ribution ,! ,secret>y1 act+ ?r\gh !  
,adm9i/rator ( ! ,heal? ,res\rces &     
,s]vices ,adm9i/ration1 %all aw>d grants
 "u ?is section1 to ! ext5t practicable1
 to eligible entities locat$ across !   
,unit$ ,/ates1 ) a focus on regions :]e 
a disproportionate numb] ( pati5ts )    
sickle cell disease or o!r h]itable     
hemoglob9opa?y pati5ts p] capita reside1
 & ) ! int5tion ( aw>d+ grants          
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 ( #aife 7#bj     
,u4,s4,c4 #ajfa77 or m9ority s]v+       
in/itution 7def9$ z an eligible         
in/itution "u section #cga ( su* ,act   
7#bj ,u4,s4,c4 #ajfgq77 t has a m$ical  

s*ool2  7,b7 s]ve an area ) a preval5ce 
( sickle cell disease2 or  7,c7 s]ve a  
rural area4  7#d7 ,eligible pati5ts ,=  
purposes ( ?is section1 pati5ts :o may  
be treat$ by ,sickle ,cell ,disease     
,treatm5t ,c5t]s1 or :o may be support$ 
by public heal? activities & o!r        
programm+1 %all include pati5ts ) sickle
 cell disease1 & may include pati5ts )  
o!r h]itable hemoglob9opa?ies4  7e7     
,national ,sickle ,cell ,disease        
,coord9at+ ,c5t]  7#a7 ,9 ,g5]al ,!     
,secret>y1 act+ ?r\gh ! ,adm9i/rator ( !
 ,heal? ,res\rces & ,s]vices            
,adm9i/ration1 %all ent] into a contract
 ) an entity to s]ve z ! ,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 ,coord9ate !    
infra/ructure ( ,sickle ,cell ,disease  

,treatm5t ,c5t]s e/abli%$ "u subsection 
7b74  7,b7 ,coord9ate & support         
hub-&-spoke frameworks4  7f7 ,,cdc      
,sickle ,cell ,disease ,data ,collection
 program = ,,scd ,treatm5t c5t]s ,!     
,secret>y1 act+ ?r\gh ! ,director ( !   
,c5t]s = ,disease ,control & ,prev5tion1
 %all coord9ate ! foll[+ ) respect to   
eligible entities "u ?is section3  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 disease & sickle cell   
trait1 includ+ subtypes z applicable1 & 
_! associat$ heal? outcomes &           
complications1 includ+ = ! purpose (--  
7,a7 improv+ national incid5ce &        
preval5ce data1 includ+ ! geographic    
di/ribution ( affect$ individuals2  7,b7
 work+ ) ! ,/ate newborn scre5+ programs
 to e/abli% a national regi/ry ( sickle 
cell newborn scre5+ data to s]ve z a    
f\ndation = assess+ longevity & !       

preval5ce ( complications result+ f     
sickle cell disease2  7,c7 id5tify+     
heal? disp>ities impact+ individuals    
born ) sickle cell disease & sickle cell
 trait1 includ+ subtypes z applicable1 &
 o!r hemoglob9opa?ies2  7,d7 assess+ !  
utilization ( !rapies1 compreh5sive     
complication risk scre5+1 & /rategies to
 prev5t complications result+ f sickle  
cell disease & to increase quality (    
life2 &  7,e7 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+ ! prev5tion & treatm5t ( sickle  
cell disease & ! preval5ce ( sickle cell
 trait4  7#d7 ,prep>+ & submitt+ to     
,congress a f9al report t includes      
recomm5dations reg>d+ ! effectiv5ess ( !
 ,sickle ,cell ,disease ,treatm5t ,c5t]s
 e/abli%$ "u subsection 7b7 & direct    
outcome measures1 includ+-- 7,a7 ! numb]
 & type ( heal? c>e res\rces utiliz$    

7su* z em]g5cy room visits1 hospital    
visits1 l5g? ( /ay1 & physician visits =
 individuals ) sickle cell disease72 &  
7,b7 ! numb] ( individuals t 7 te/$ &   
subsequ5tly receiv$ g5etic c\nsel+ = !  
sickle cell trait4  7g7 ,reque/ =       
in=mation ,n lat] ?an #ahj days aft] !  
date ( enactm5t ( ! ,sickle ,cell       
,disease ,treatm5t ,c5t]s ,act ( #bjbb1 
& 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    
7h7 ,report to ,congress  7#a7 ,9 ,g5]al
 ,n lat] ?an #c ye>s aft] ! date ( !    
enactm5t ( ! ,sickle ,cell ,disease     
,treatm5t ,c5t]s ,act ( #bjbb & e #e    
ye>s !reaft]1 ! ,secret>y %all submit to
 ,congress 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 framework 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 & age4  7i7 ,au?orization (   
appropriations ,!re are au?oriz$ to be  
appropriat$ to c>ry out ?is section1    
#ece1jjj1jjj = fiscal ye> #bjbc & ea*   
fiscal ye> !reaft]4 ,( ! am\nt made     
available = a fiscal ye> "u ! prec$+    
s5t5ce1 n less ?an--  7#a7 #gj p]c5t    
%all be us$ to aw>d grants to at lea/   
#abh eligible entities :]e ! application
 is submitt$ by m$ical hubs or spokes2  
7#b7 #bj p]c5t %all be us$ to aw>d      

grants to at lea/ #ajj eligible entities
 :]e ! application is submitt$ by       
community-bas$ sickle cell disease      
organizations or nonpr(it entities t are
 "p ( an eligible entity2  7#c7 #e p]c5t
 %all be us$ = ! e/abli%m5t & ma9t5ance 
( ! ,national ,sickle ,cell ,disease    
,coord9at+ ,c5t] describ$ 9 subsection  
7e72 &  7#d7 #e p]c5t %all be us$ = !   
activities ( ! ,sickle ,cell ,data      
,collection program ( ! ,c5t]s =        
,disease ,control & ,prev5tion describ$ 
9 ?is section4  4