,i  #aac? ,,congress  #a/ ,session  ,h4 
,r4 #bjgc  ,,9 ,,! ,,h\se ,,(           
,,repres5tatives  ,may #ba1 #bjac ,mr4  
,brady ( ,texas 7= himself1 ,mrs4       
,capps1 ,mr4 ,k+ ( ,new ,york1 ,ms4     
,norton1 ,mr4 ,roskam1 ,mr4 ,co/a1 &    
,mr4 ,bi%op ( ,new ,york7 introduc$ !   
foll[+ bill2 :i* 0 ref]r$ to !          
,committee on ,en]gy & ,comm]ce  ,a     
,,bill  ,to direct ! ,secret>y ( ,heal? 
& ,human ,s]vices to e/abli% an         
int]ag5cy coord9at+ committee on        
pulmon>y hyp]t5sion to develop          
recomm5dations to advance rese>*1       
increase aw>5ess & education1 & improve 
heal? & heal? c>e1 & = o!r purposes4    
#a4 ,%ort title ,?is ,act may be cit$ z 
! ,pulmon>y ,hyp]t5sion ,rese>* &       
,diagnosis ,act ( #bjac4  #b4 ,f9d+s ,! 
,congress f9ds z foll[s3  7#a7 ,pulmon>y
 hyp]t5sion is a s]i\s1 debilitat+1 &   
(t5 fatal progressive condition :]e !   
blood pressure 9 ! lungs rises to       
dang]\sly high levels4 ,9 pulmon>y      
hyp]t5sion pati5ts1 ! walls ( ! art]ies 

t take blood f ! "r side ( ! he>t to !  
lungs ?ick5 & con/rict4 ,z a result1 !  
"r side ( ! he>t has to pump h>d] to    
move blood into ! lungs1 caus+ x to     
enl>ge & ultimately fail4  7#b7 ,9      
advanc$ /ages ( pulmon>y hyp]t5sion1 !  
pati5t is able to p]=m only m9imal      
activity & has symptoms ev5 :5 re/+1    
result+ 9 consid]able disability4 ,!    
disease may wors5 to ! po9t :]e ! pati5t
 is completely b$ridd54 ,9 a matt] (    
mon?s1 _m pulmon>y hyp]t5sion pati5ts h 
become s functionally det]iorat$ t !y h 
lo/ _! jobs & are dep5d5t on family &   
disability b5efits4  7#c7 ,despite !    
importance ( e>ly diagnosis on          
prognosis1 pulmon>y hyp]t5sion is r>ely 
pick$ up 9 a r\t9e m$ical exam4 ,ev5 9  
its lat] /ages1 ! signs ( ! disease are 
frequ5tly confus$ ) m common conditions 
t affect ! he>t & lungs4 ,due to ! fact 
t ! av]age l5g? ( "t betwe5 ! onset (   
symptoms & an accurate diagnosis is     
pres5tly #b4h ye>s1 ne>ly ?ree out ( f\r
 pati5ts h advanc$ pulmon>y hyp]t5sion  

by ! "t !y are accurately diagnos$4     
7#d7 ,:ile pulmon>y hyp]t5sion rema9s an
 incurable condition1 progress 9 our    
sci5tific und]/&+ ( ! disease has l$ to 
! developm5t & ,food & ,drug            
,adm9i/ration approval ( n9e innovative 
!rapies indicat$ to treat pulmon>y      
hyp]t5sion4  7#e7 ,exi/+ treatm5t       
options c significantly ext5d life &    
improve quality ( life = pati5ts )      
pulmon>y hyp]t5sion4 ,! effectiv5ess (  
pulmon>y hyp]t5sion treatm5t options is 
directly ti$ to h[ e>ly 9 ! progression 
( ! condition a pati5t c be accurately  
diagnos$ & beg9 ! correct regim5 (      
!rapies4 ,improv$ e>ly int]v5tion w     
improve heal? outcomes = pulmon>y       
hyp]t5sion pati5ts :ile r$uc+ !         
necessity = m dra/ic & co/ly treatm5t   
options1 su* z a lung or he>t-lung      
transplant4  #c4 ,int]ag5cy pulmon>y    
hyp]t5sion coord9at+ committee  7a7     
,e/abli%m5t ,! ,secret>y ( ,heal? &     
,human ,s]vices 79 ?is ,act ref]r$ to z 
! ,secret>y7 %all e/abli% a committee1  

to be kn[n z ! ,int]ag5cy ,pulmon>y     
,hyp]t5sion ,coord9at+ ,committee 79 ?is
 ,act ref]r$ to z ! ,committee71 to make
 recomm5dations on1 & coord9ate1 all    
ef=ts )9 ! ,dep>tm5t ( ,heal? & ,human  
,s]vices conc]n+ pulmon>y hyp]t5sion4   
7b7 ,responsibilities ,9 c>ry+ out its  
duties "u ?is section1 ! ,committee     
%all--  7#a7 develop & annually update a
 summ>y ( pulmon>y hyp]t5sion advances 9
 m$ical rese>* & treatm5t developm5t &  
improvem5t1 e>ly & accurate diagnosis1  
appropriate & timely int]v5tion1        
transplantation1 & access to c>e &      
!rapies = pati5ts2  7#b7 monitor ,f$]al 
activities ) respect to pulmon>y        
hyp]t5sion2  7#c7 make recomm5dations to
 ! ,secret>y reg>d+ appropriate *anges  
to su* activities1 includ+              
recomm5dations ) respect to ! /rategic  
plan develop$ "u p>agraph 7#e72  7#d7   
make recomm5dations to ! ,secret>y      
reg>d+ /akehold] p>ticipation 9         
decisions relat+ to pulmon>y hyp]t5sion2
  7#e7 develop & annually update a      

compreh5sive /rategic plan to           
coop]atively improve heal? outcomes =   
pulmon>y hyp]t5sion pati5ts :i*         
includes--  7,a7 recomm5dations to      
improve pr(essional education conc]n+   
accurate diagnosis & appropriate        
int]v5tion = heal? c>e provid]s2  7,b7  
recomm5dations to improve !             
transplantation crit]ia & process       
conc]n+ lung & he>t-lung transplants =  
pulmon>y hyp]t5sion pati5ts2  7,c7      
recomm5dations to improve public aw>5ess
 & recognition ( pulmon>y hyp]t5sion2   
7,d7 recomm5dations to improve heal? c>e
 deliv]y & promote e>ly & accurate      
diagnosis = pulmon>y hyp]t5sion pati5ts2
 &  7,e7 recomm5dations to sy/ematically
 advance ! full spectrum ( biom$ical    
rese>*1 includ+ specific recomm5dations 
= basic1 translational1 cl9ical1 &      
p$iatric rese>*1 & rese>* tra9+ & c>e]  
developm5t2 &  7#f7 submit to !         
,congress ! /rategic plan "u p>agraph   
7#e7 & any updates to su* plan4  7c7    
,memb]%ip  7#a7 ,9 g5]al ,! ,committee  

%all be compos$ (--  7,a7 ! ,adm9i/rator
 ( ! ,heal? ,res\rces & ,s]vices        
,adm9i/ration2  7,b7 ! ,director ( !    
,c5t]s = ,disease ,control & ,prev5tion 
& ! directors ( su* c5t]s at ! ,c5t]s = 
,disease ,control & ,prev5tion z !      
,secret>y det]m9es appropriate2  7,c7 ! 
,director ( ! ,national ,in/itutes (    
,heal? & ! directors ( su* in/itutes1   
c5t]s1 & (fices at ! ,national          
,in/itutes ( ,heal? z ! ,secret>y       
det]m9es appropriate2  7,d7 ! ,director 
( ! ,ag5cy = ,heal?c>e ,rese>* &        
,quality2  7,e7 ! ,commission] ( ,food &
 ,drugs & ! directors ( su* c5t]s &     
(fices at ! ,food & ,drug ,adm9i/ration 
z ! ,secret>y det]m9es appropriate2     
7,f7 ! heads ( o!r relevant ag5cies z ! 
,secret>y deems appropriate2 &  7,g7 !  
additional memb]s appo9t$ "u p>agraph   
7#b74  7#b7 ,additional memb]s ,n few]  
?an #f memb]s ( ! ,committee or #a_/c ( 
! total memb]%ip ( ! ,committee1 :i*ev] 
is great]1 %all be compos$ ( non-,f$]al 
public memb]s to be appo9t$ by !        

,secret>y1 ( :i*--  7,a7 at lea/ "o su* 
memb] %all be an individual ) a         
diagnosis ( pulmon>y hyp]t5sion2  7,b7  
at lea/ "o su* memb] %all be ! prim>y   
c>egiv] = an individual ) a diagnosis ( 
pulmon>y hyp]t5sion2 &  7,c7 at lea/ "o 
su* memb] %all be a repres5tative ( a   
lead+ rese>*1 advocacy1 & support       
organization prim>ily s]v+ individuals )
 a diagnosis ( pulmon>y hyp]t5sion4  7d7
 ,adm9i/rative support2 t]ms ( s]vice2  
o!r provisions ,! foll[+ provisions %all
 apply ) respect to ! ,committee3  7#a7 
,! ,committee %all receive necess>y &   
appropriate adm9i/rative support f !    
,secret>y4  7#b7 ,memb]s ( ! ,committee 
appo9t$ "u subsection 7c77#b7 %all s]ve 
= a t]m ( #d ye>s1 & may be appo9t$ = "o
 or m additional #d-ye> t]ms4 ,any memb]
 appo9t$ to fill a vacancy = an unexpir$
 t]m %all be appo9t$ = ! rema9d] ( su*  
t]m4 ,a memb] may s]ve aft] ! expiration
 ( ! memb]'s t]m until a successor has  
tak5 (fice4  7#c7 ,! ,committee %all    
meet at ! call ( ! *airp]son or ^u !    

reque/ ( ! ,secret>y4 ,! ,committee %all
 meet n few] ?an two times ea* ye>4     
7#d7 ,all meet+s ( ! ,committee %all be 
public & %all include appropriate "t    
p]iods = que/ions & pres5tations by !   
public4  7e7 ,subcommittees2 e/abli%m5t 
& memb]%ip ,9 c>ry+ out its functions1 !
 ,committee may e/abli% subcommittees & 
conv5e work%ops & conf]5ces4 ,su*       
subcommittees %all be compos$ (         
,committee memb]s & may hold su* meet+s 
z are necess>y to enable ! subcommittees
 to c>ry out _! duties4  7f7 ,sunset    
,?is section %all n apply aft] ,septemb]
 #cj1 #bjai1 & ! ,committee %all be     
t]m9at$ on su* date4  #d4 ,report to    
,congress  7a7 ,9 g5]al ,on a bi5nial   
basis aft] ! date ( enactm5t ( ?is ,act1
 ! ,secret>y1 9 coord9ation ) !         
,committee1 %all prep>e & submit to !   
,committee on ,heal?1 ,education1       
,labor1 & ,p5sions ( ! ,s5ate & !       
,committee on ,en]gy & ,comm]ce         
,committee ( ! ,h\se ( ,repres5tatives a
 progress report on activities relat$ to

 improv+ heal? outcomes = pulmon>y      
hyp]t5sion pati5ts4  7b7 ,cont5ts ,!    
report submitt$ "u subsection 7a7 %all  
conta9--  7#a7 in=mation on ! incid5ce (
 pulmon>y hyp]t5sion & tr5d data ( su*  
incid5ce s9ce ! date ( enactm5t ( !     
,pulmon>y ,hyp]t5sion ,rese>* &         
,diagnosis ,act ( #bjac2  7#b7 in=mation
 on ! av]age "t betwe5 initial scre5+ & 
accurate diagnosis z well z ! av]age    
/age ( pulmon>y hyp]t5sion :5           
appropriate int]v5tion beg9s &          
up-to-date1 relat$ tr5d data2  7#c7     
in=mation on ! effectiv5ess & outcomes (
 int]v5tions = individuals diagnos$ )   
pulmon>y hyp]t5sion1 includ+--  7,a7    
mortality rate1 z well z ! frequ5cy (   
dra/ic treatm5t options l lung &        
he>t-lung transplants2 &  7,b7          
up-to-date1 relat$ tr5d data2  7#d7     
in=mation on break?r\ghs 9 basic sci5ce 
z well z translational & cl9ical rese>* 
activities2  7#e7 in=mation on activity 
to facilitate ! developm5t ( innovative 
treatm5t options & diagno/ic tools2 &   

7#f7 in=mation on s]vices & supports    
provid$ to individuals ) a diagnosis (  
pulmon>y hyp]t5sion4