,i  #aaith ,,congress  #ast ,session    
,h4 ,r4 #ecee  ,,in ,,the ,,house ,,of  
,,representatives  ,september #ae1      
#bjbe,mr4 ,costa 7for himself and ,ms4  
,van ,duyne7 introduced the following   
bill2 which was referred to the         
,committee on ,energy and ,commerce  ,a 
,,bill  ,to direct the ,secretary of    
,health and ,human ,services to carry   
out activities to promote screenings for
 liver diseases in newborns1 and for    
other purposes4  #a4 ,short title ,this 
,act may be cited as the ,ian           
,kalvinskas ,pediatric ,liver ,cancer   
,early ,detection and ,screening ,act4  
#b4 ,findings ,congress finds that--    
7#a7 the life of ,california teenager   
,ian ,kalvinskas--who received a liver  
transplant1 fulfilled his goal of       
interning on ,capitol ,hill1 and died   
from cancer on ,june #bg1               
#bjbe--;demonstrates the urgent need for
 earlier detection of pediatric liver   
disease1 lifelong follow-up1 and wider  
access to donor organs2  7#b7 pediatric 

primary liver tumors are among the      
fastest-rising childhood cancers in the 
,united ,states1 with hepatoblastoma    
increasing by approximately #b percent  
per year to and now approaching #a4g    
cases per million children2 although the
 overall #e-year relative survival rate 
from a pediatric primary liver tumor is 
about #gg percent1 survival falls below 
#fj percent for adolescents and for     
tumors diagnosed with distant           
metastases2  7#c7 biliary atresia1 a    
neonatal malformation of the bile ducts 
occurring in roughly #a in #ab1jjj live 
births and the leading indication for   
infant liver transplantation1 shows     
transplant-free survival that roughly   
doubles when a ,kasai portoenterostomy  
is performed before #fj days of life2   
7#d7 clinically validated early-warning 
tools can detect cholestatic liver      
disease in time for therapeutic         
intervention1 including--  7,a7 routine 
direct-bilirubin measurement in the     
newborn heel-stick panel1 which when    

used in multi-center1 ,united ,states   
pilots detected #ajj percent of         
biliary-atresia cases with minimal false
 positives2 and  7,b7 improved education
 of pediatric primary care providers to 
be alert to early warning signs of      
biliary atresia with expedited referral 
to pediatric liver specialists2  7#e7   
despite recent liver donor allocation   
reforms1 more than #a in #aj infants and
 more than #a in #bj older children on  
the ,united ,states liver-transplant    
wait list die before receiving a graft2 
7#f7 living-donor liver transplantation 
expands the pediatric organ pool and    
delivers equivalent or superior #a-year1
 #c-year1 and #e-year graft and patient 
survival compared with deceased-donor   
grafts2 and  7#g7 many children with    
rare liver diseases1 including liver    
cancer1 are only able to receive timely 
transplants through physician advocacy  
to petition for exceptions to the       
standard listing practices4  #c4        
,pediatric liver disease outcomes and   

newborn screening panels  7a7 ,,gao     
,study ,the ,comptroller ,general of the
 ,united ,states shall conduct a study  
on--  7#a7 federally funded initiatives 
to improve early detection and treatment
 of pediatric liver tumors1 including   
education programs for healthcare       
providers1 as well as research to       
identify risk factors and innovative    
therapeutic strategies2  7#b7 to the    
extent reliable data are available1 what
 is known about trends in pediatric     
liver-transplant wait-list mortality1   
including a breakdown by geography1     
race1 insurance status1 diagnosis1 and  
severity of illness2 and  7#c7 to the   
extent reliable data are available1 what
 is known about the cost effectiveness  
of adding direct-bilirubin as a         
screening test for biliary atresia and  
other cholestatic liver diseases to     
,state newborn-screening panels4  7b7   
,report to ,congress ,not later than one
 year after the date of enactment of    
this ,act1 the ,comptroller ,general    

shall transmit to ,congress a report on 
the results of the study4  #d4 ,public  
education program  7a7 ,in general ,the 
,secretary of ,health and ,human        
,services1 acting through the           
,administrator for the ,health          
,resources and ,services                
,administration1 in consultation with   
the ,director of the ,centers for       
,disease ,control and ,prevention 7in   
this section referred to as the ,,cdc71 
shall carry out a public education      
program under which the ,secretary shall
 develop and disseminate plain-language 
materials on-- 7#a7 early signs of      
pediatric liver disease2 and  7#b7 the  
option and safety of living liver       
donation4  7b7 ,implementation ,in      
carrying out the program under          
subsection 7a71 the ,secretary may--    
7#a7 coordinate implementation of the   
program with programs of the ,,cdc1     
including the ,national ,comprehensive  
,cancer ,control ,program 7or any       
successor campaign72 and  7#b7 in       

addition to the program referred to in  
paragraph 7#a71 disseminate materials   
developed under this section through any
 other public-education initiative of   
the ,department of ,health and ,human   
,services that promotes liver-disease   
prevention1 pediatric cancer awareness1 
or living-organ donation4  7c7 ,,gao    
report to ,congress ,not later than #c  
years after the date on which the       
,secretary initiates the program under  
subsection 7a71 the ,comptroller        
,general of the ,united ,states shall   
transmit to ,congress a report on the   
results of the program4  7d7 ,funding   
,no additional funds are authorized to  
be appropriated for the purpose of      
carrying out this section4