,i  #aai? ,,congress  #b;d ,session  ,h4
 ,r4 #hgid  ,,9 ,,! ,,h\se ,,(          
,,repres5tatives  ,may #ac1 #bjbf,ms4   
,johnson ( ,texas 7= h]self1 ,mr4       
,wilson ( ,s\? ,c>ol9a1 & ,ms4          
,mc,bride7 introduc$ ! foll[+ bill2 :i* 
0 ref]r$ to ! ,committee on ,en]gy &    
,comm]ce  ,a ,,bill  ,to provide =      
increas$ rese>* & initiatives relat$ to 
ble$+ disord]s 9 und]s]v$ populations1 &
 = o!r purposes4  #a4 ,%ort title ,?is  
,act may be cit$ z ! ,fo/]+ ,effective  
,diagnosis & ,treatm5t = ,und]s]v$      
,populations ) ,ble$+ ,disord]s ,act (  
#bjbf or ! ,,f$ ,,up ) ,ble$+ ,disord]s 
,act ( #bjbf4  #b4 ,f9d+s ,congress f9ds
 ! foll[+3  7#a7 ,curr5t data e/imates t
 z _m z #a p]c5t ( wom5 9 ! ,unit$      
,/ates may h a ble$+ disord]1 & _m are  
unaw>e ( _! condition4  7#b7 ,wom5 h    
report$ delays 9 diagnosis ( #af ye>s or
 m4  7#c7 ,increas+ timely diagnosis =  
wom5 ) von ,willebr& disease aligns )   
public heal? goals outl9$ 9 ,heal?y ,p  
#bjcj support$ by ! ,dep>tm5t ( ,heal? &

 ,human ,s]vices ,(fice ( ,disease      
,prev5tion & ,heal? ,promotion4  7#d7   
,)\t diagnosis1 wom5 _c receive prop]   
c>e & treatm5t f a provid] ) ! requisite
 exp]tise1 su* z a hemophilia treatm5t  
c5t]1 :i* provides specializ$ c>e = p ) 
ble$+ disord]s4 ,mortality rates &      
hospitalization rates = ble$+           
complications f hemophilia are #dj p]c5t
 l[] among all p :o receive c>e 9       
hemophilia treatm5t c5t]s ?an among ^?  
:o did n receive ?is c>e4  7#e7 ,wom5 ) 
ble$+ disord]s are at high] risk (      
adv]se pregnancy outcomes4  7#f7 ,z _m z
 #ej p]c5t ( girls & wom5 :o are c>ri]s 
= hemophilia ,a or ,b h factor ,,viii or
 ,,ix levels bel[ #ej p]c5t & are at    
risk = ble$+ symptoms or heavy ble$+    
relat$ to m5/ruation or pregnancy4 ,9   
sev]e cases1 a hy/]ectomy is a recomm5d$
 treatm5t option = heavy m5/rual ble$+4 
,m rese>* into wom5 & ble$+ disord]s    
c\ld help to avoid unnecess>y           
hy/]ectomies & pres]ve f]tility4  7#g7  
,! annual direct economic co/ ( heavy   

m5/rual ble$+ is #a1jjj1jjj1jjj4 ,!     
annual indirect co/ is #ab1jjj1jjj1jjj4 
7#h7 ,rese>* into ble$+ disord]s &      
clott+ factors is b5eficial = ! ,unit$  
,/ates milit>y & its blood rese>*       
program z well z ef=ts to prev5t or     
treat ble$+ t results f sev]e injury or 
trauma4  #c4 ,int]ag5cy review relat$ to
 ble$+ disord]s 9 c]ta9 populations  7a7
 ,9 g5]al ,! ,secret>y ( ,heal? & ,human
 ,s]vices 79 ?is ,act ref]r$ to z !     
,secret>y7 %all conduct a review (1 &   
s]ve z ! lead ag5cy head responsible =  
review+1 & z necess>y & appropriate1    
updat+ ,f$]al programs1 activities1 &   
/rategic plans relat$ to-- 7#a7 ! /ate (
 ! sci5ce on ble$+ disord]s 9 wom5 &    
girls2  7#b7 tra9+ & education (        
provid]s on issues specific to wom5 &   
girls & ble$+ disord]s2  7#c7 access to 
treatm5t & s]vices = wom5 & girls )     
ble$+ disord]s1 includ+--  7,a7 c>e     
deliv]$ at hemophilia treatm5t c5t]s2   
7,b7 c>e deliv]$ 9 o!r cl9ical sett+s2 &
  7,c7 access b>ri]s specific to wom5 & 

girls liv+ 9 rural & und]s]v$ areas2 &  
7#d7 inclusion ( wom5 & girls 9 cl9ical 
rese>* relat$ to ble$+ disord]s4  7b7   
,report ,n lat] ?an two ye>s aft] ! date
 ( ! enactm5t ( ?is ,act1 ! ,secret>y   
%all submit to ! ,committee on ,en]gy & 
,comm]ce & ! ,committee on              
,appropriations ( ! ,h\se (             
,repres5tatives & ! ,committee on       
,heal?1 ,education1 ,labor1 & ,p5sions &
 ! ,committee on ,appropriations ( !    
,s5ate1 & make available on ! public    
website ( ! ,dep>tm5t ( ,heal? & ,human 
,s]vices1 a compreh5sive report on !    
review "u subsection 7a71 :i* %all      
include-- 7#a7 a summ>y ( ! review1     
includ+ a detail$ assessm5t ( previ\s & 
ongo+ rese>* & activities relat$ to ea* 
area specifi$ 9 subsection 7a72  7#b7 a 
description ( recomm5dations on h[ to   
improve on ea* ( ! areas specifi$ 9     
subsection 7a71 relat$ to ,f$]al        
programs1 activities1 or /rategic plans 
bas$ on ! f9d+s ( su* review2 &  7#c7 ! 
,secret>y's recomm5dations on areas =   

improv$ coord9ation betwe5 relevant     
,f$]al ag5cies & programs1 includ+      
,f$]al ag5cies t focus on sci5tific &   
cl9ical rese>*1 includ+--  7,a7 !       
,dep>tm5t ( ,heal? & ,human ,s]vices2   
7,b7 ! ,c5t]s = ,m$ic>e  ,m$icaid       
,s]vices2  7,c7 ! ,heal? ,res\rces &    
,s]vices ,adm9i/ration2  7,d7 ! ,c5t]s =
 ,disease ,control & ,prev5tion2  7,e7 !
 ,national ,in/itutes ( ,heal?2  7,f7 ! 
,dep>tm5t ( ,vet]ans ,affairs2  7,g7 !  
,def5se ,heal? ,ag5cy2 &  7,h7 ! ,food &
 ,drug ,adm9i/ration4  7c7 ,public      
comm5t p]iod ,dur+ ! p]iod ( ! review "u
 subsection 7a7 & dur+ ! p]iod ( prep>+ 
( ! report "u subsection 7b71 !         
,secret>y %all provide = a public comm5t
 p]iod4 ,! ,secret>y %all consid]       
comm5ts receiv$ dur+ ea* su* public     
comm5t p]iod 9 conduct+ su* review &    
prep>+ su* report1 especially comm5ts   
receiv$ f-- 7#a7 individuals liv+ )     
ble$+ disord]s2  7#b7 national ble$+    
disord]s pati5t & provid] advocacy      
organizations2 &  7#c7 entities receiv+ 

,f$]al funds "u a ,f$]al program provid+
 = rese>* on ble$+ disord]s4  7d7 ,ble$+
 disord] def9$ ,9 ?is section1 ! t]m    
ble$+ disord] means an inh]itable       
disord] :i*-- 7#a7 involves an impairm5t
 9 ! blood's ability to =m a prop] clot1
 includ+ hemophilia1 von ,willebr&      
disease1 & r>e factor defici5cies2 &    
7#b7 c cause ext5d$ ble$+ 7int]nal z    
well z ext]nal71 spontane\sly or 9      
response to injury1 surg]y1 trauma1     
m5/ruation1 or *ildbir?4  #d4 ,national 
public education & aw>5ess campaign )   
respect to wom5 & girls & ble$+ disord]s
  7a7 ,9 g5]al ,n lat] ?an "o ye> aft] !
 date on :i* ! report "u section #c is  
publi%$1 ! ,secret>y1 utiliz+ !         
in=mation f su* report & 9 coord9ation )
 o!r ,f$]al (fices & ag5cies1 z         
appropriate1 %all aw>d competitive      
grants or contracts to "o or m public or
 private entities to c>ry out a         
national1 evid5ce-bas$ education &      
aw>5ess campaign ) ! aim ( improv+      
aw>5ess (1 & diagnosis & treatm5t (1    

wom5 & girls ) ble$+ disord]4  7b7      
,consultation ,9 c>ry+ out ! campaign "u
 ?is section1 ! ,secret>y %all consult )
 appropriate /akehold]s1 includ+        
national ble$+ disord]s organizations1  
national provid] organizations1 & !     
recipi5ts ( ,f$]al grants relat+ to     
hemophilia4  7c7 ,requirem5ts ,!        
campaign "u ?is section %all--  7#a7 be 
a nationwide1 evid5ce-bas$ campaign     
relat$ to ble$+ disord]s 9 wom5 & girls 
t is aim$ at wom5 & girls & at provid]s1
 includ+ s*ool nurses1 p$iatricians1    
prim>y c>e physicians1 family m$ic9e    
physicians1 ob/etricians & gynecologi/s1
 & hematologi/s2  7#b7 utilize /rategies
 to ensure individuals liv+ 9 rural &   
und]s]v$ areas are rea*$2  7#c7 include 
culturally & l+ui/ically appropriate    
res\rces1 z applicable2 &  7#d7 include 
! dissem9ation ( in=mation &            
communication res\rces relat$ to wom5 & 
girls ) ble$+ disord]s to public heal?  
dep>tm5ts1 heal? c>e provid]s1 s*ools1  
m$ical s*ools & heal? c>e facilities1   

includ+ su* provid]s & facilities t     
provide pr5atal & p$iatric c>e4  7d7    
,evaluation ,! ,secret>y %all-- 7#a7    
e/abli% b5*m>ks & conduct qualitative   
assessm5ts reg>d+ ! aw>5ess campaign "u 
?is section2 &  7#b7 be=e ! end ( ! la/ 
fiscal ye> = :i* fund+ "u subsection 7e7
 is available1 prep>e & submit to !     
,committee on ,heal?1 ,education1       
,labor1 & ,p5sions ( ! ,s5ate &         
,committee on ,en]gy & ,comm]ce ( !     
,h\se ( ,repres5tatives an evaluation ( 
! aw>5ess campaign "u ?is section4  7e7 
,au?orization ( appropriations ,to c>ry 
out ?is section1 !re is au?oriz$ to be  
appropriat$ #aj1jjj1jjj = ea* ( fiscal  
ye>s #bjbg ?r\gh #bjca4