,,ii ,calendar ,no4 #dbi #aahth         
,,congress  #b;d ,session  ,s4 #cgeg    
,,in ,,the ,,senate ,,of ,,the ,,united 
,,states  ,february #g1 #bjbd,mr4       
,durbin 7for himself1 ,mr4 ,young1 ,mr4 
,casey1 ,ms4 ,smith1 and ,mrs4          
,gillibrand7 introduced the following   
bill2 which was read twice and referred 
to the ,committee on ,health1           
,education1 ,labor1 and ,pensions  ,june
 #ah1 #bjbd,reported by ,mr4 ,sanders1  
with an amendment,strike out all after  
the enacting clause and insert the part 
printed in italic  ,a ,,bill  ,to       
reauthorize the congenital heart disease
 research1 surveillance1 and awareness  
program of the ,centers for ,disease    
,control and ,prevention1 and for other 
purposes4  #a4 ,short title ,this ,act  
may be cited as the ,congenital ,heart  
,futures ,reauthorization ,act of #bjbd4
  #b4 ,national congenital heart disease
 research1 surveillance1 and awareness  
,section #cii,v-#b of the ,public       
,health ,service ,act 7#db ,u4,s4,c4    

#bhj;g-#ac7 is amended-- 7#a7 by        
redesignating subsections 7f7 and 7g7 as
 subsections 7h7 and 7i71 respectively2 
7#b7 by inserting after subsection 7e7  
the following3  7f7 ,stakeholder        
workshop  7#a7 ,in general ,not later   
than #a year after the date of enactment
 of the ,congenital ,heart ,futures     
,reauthorization ,act of #bjbd1 the     
,secretary shall convene a workshop     
composed of subject matter experts1 on  
adult patients living with congenital   
heart disease1 to-- 7,a7 identify       
research gaps and opportunities related 
to the lifelong needs of congenital     
heart disease patients1 including       
long-term health outcomes1 quality of   
life1 mental health1 and health care    
utilization2  7,b7 assess the workforce 
capacity in the ,united ,states of      
health care providers who treat adult   
patients living with congenital heart   
disease1 and options to address any such
 shortages in such workforce1 which may 
include strategies to expand fellowship 

training programs and support regional  
care centers2 and  7,c7 foster          
collaboration and dissemination of      
information across ,federal agencies1   
health care providers1 researchers1 and 
patient organizations4  7#b7            
,composition ,the workshop described in 
paragraph 7#a7 shall be led by the      
,secretary1 and shall involve           
participants that include1 as           
appropriate1 stakeholders representing  
patient organizations1 health care      
professionals1 research entities1 health
 insurance providers1 accrediting       
organizations1 and relevant ,federal    
agencies1 including the ,centers for    
,disease ,control and ,prevention1 the  
,national ,institutes of ,health1 and   
the ,health ,resources and ,services    
,administration4  7g7 ,report ,not later
 than #c years after the date of        
enactment of the ,congenital ,heart     
,futures ,reauthorization ,act of #bjbd1
 the ,secretary shall issue a report to 
the ,committee on ,health1 ,education1  

,labor1 and ,pensions of the ,senate and
 the ,committee on ,energy and ,commerce
 of the ,house of ,representatives on   
findings and recommendations of the     
,secretary with respect to strategies to
 advance research related to the        
lifelong needs of congenital heart      
disease patients and address workforce  
shortages of providers for adult        
patients living with congenital heart   
disease1 and1 as appropriate1 progress  
made by the ,secretary to implement such
 strategies and a plan for implementing 
such recommendations4  2 and  7#c7 in   
subsection 7i71 as so redesignated1 by  
striking #bjbj through #bjbd and        
inserting #bjbe through #bjbi4  #a4     
,short title ,this ,act may be cited as 
the ,congenital ,heart ,futures         
,reauthorization ,act of #bjbd4  #b4    
,national congenital heart disease      
research1 surveillance1 and awareness   
,section #cii,v-#b of the ,public       
,health ,service ,act 7#db ,u4,s4,c4    
#bhj;g-#ac7 is amended-- 7#a7 by        

redesignating subsections 7f7 and 7g7 as
 subsections 7h7 and 7i71 respectively2 
7#b7 by inserting after subsection 7e7  
the following3  7f7 ,stakeholder        
workshop  7#a7 ,in general ,not later   
than #a year after the date of enactment
 of the ,congenital ,heart ,futures     
,reauthorization ,act of #bjbd1 the     
,secretary shall convene a workshop on  
congenital heart disease1 to-- 7,a7     
identify research gaps and opportunities
 related to the needs of adults with    
congenital heart disease1 including with
 respect to long-term health outcomes1  
quality of life1 mental health1 and     
health care utilization2  7,b7 assess   
the workforce capacity in the ,united   
,states to treat adults with congenital 
heart disease1 and options to address   
any shortages in such workforce1 which  
may include strategies related to       
fellowship training programs2 and  7,c7 
foster collaboration and dissemination  
of information related to congenital    
heart disease among ,federal agencies1  

health care providers1 researchers1     
patient advocates1 and other relevant   
stakeholders4  7#b7 ,composition ,the   
workshop described in paragraph 7#a7    
shall include relevant stakeholders1    
such as patient advocates1 health care  
providers1 researchers1 and health      
insurance issuers1 and representatives  
of relevant ,federal agencies1 including
 the ,centers for ,disease ,control and 
,prevention1 the ,national ,institutes  
of ,health1 and the ,health ,resources  
and ,services ,administration4  7g7     
,report ,not later than #c years after  
the date of enactment of the ,congenital
 ,heart ,futures ,reauthorization ,act  
of #bjbd1 the ,secretary shall issue a  
report to the ,committee on ,health1    
,education1 ,labor1 and ,pensions of the
 ,senate and the ,committee on ,energy  
and ,commerce of the ,house of          
,representatives on findings and        
recommendations of the ,secretary with  
respect to strategies to advance        
research related to the needs of        

individuals of all ages with congenital 
heart disease and address workforce     
shortages of providers for adults with  
congenital heart disease1 and1 as       
appropriate1 a plan for implementing    
such strategies1 including any progress 
to date4  2 and  7#c7 in subsection 7i71
 as so redesignated1 by striking #bjbj  
through #bjbd and inserting #bjbe       
through #bjbi4  ,june #ah1              
#bjbd,reported with an amendment