,i  #aag? ,,congress  #a/ ,session  ,h4 
,r4 #eihi  ,,9 ,,! ,,h\se ,,(           
,,repres5tatives  ,novemb] #af1         
#bjba,mr4 ,swalwell 7= himself1 ,mr4    
,pet]s1 & ,mr4 ,emm]7 introduc$ ! foll[+
 bill2 :i* 0 ref]r$ to ! ,committee on  
,en]gy & ,comm]ce1 & 9 addition to !    
,committee on ,ways & ,means1 = a p]iod 
to be subsequ5tly det]m9$ by ! ,speak]1 
9 ea* case = consid]ation ( su*         
provisions z fall )9 ! jurisdiction ( ! 
committee conc]n$  ,a ,,bill  ,to       
require ! ,secret>y ( ,heal? & ,human   
,s]vices to conduct a demon/ration      
program to g5etic & g5omic te/+ = c]ta9 
*ildr51 to provide = a /udy by !        
,national ,academy ( ,m$ic9e on ! use ( 
su* te/+ to improve heal? c>e1 & = o!r  
purposes4  #a4 ,%ort title ,?is ,act may
 be cit$ z ! ,precision ,m$ic9e ,answ]s 
= ,kids ,today ,act4  #b4 ,c5t]s =      
,m$ic>e  ,m$icaid ,s]vices ,guidance on 
! ,e>ly & ,p]iodic ,scre5+1 ,diagno/ic1 
& ,treatm5t ,b5efit ,n lat] ?an #f mon?s
 aft] ! date ( enactm5t ( ?is ,act1 !   

,c5t]s = ,m$ic>e  ,m$icaid ,s]vices %all
 issue guidance to ,/ates on au?ority & 
requirem5ts "u ! ,m$icaid program "u    
title ,,xix ( ! ,social ,security ,act  
to provide m$ically necess>y heal? c>e t
 falls )9 ! scope ( s]vices specifi$ "u 
section #aije7r7 ( ! ,social ,security  
,act 7#db ,u4,s4,c4 #acif;d7r77 to a    
*ild1 reg>dless ( :e!r ! s]vice is      
available = adults "u ! ,/ate plan 7or  
waiv] ( su* plan7 "u su* title4 ,!      
guidance %all-- 7#a7 include te*nical & 
educational assi/ance on h[ to increase 
! frequ5cy ( cov]age "u ! ,/ate plan 7or
 waiv]7 pursuant to p>agraphs 7#d7 &    
7#af7 ( section #aije7;a7 ( su* ,act    
7#db ,u4,s4,c4 #acif;d7a77 = g5etic &   
g5omic te/+ diagno/ic s]vices1 includ+  
:ole exome sequ5c+1 :ole g5ome sequ5c+1 
& g5e panels :5 recomm5d$ by a qualifi$ 
treat+ provid] z a fir/- or second-ti]  
te/ = p$iatric pati5ts1 includ+ ^? :o-- 
7,a7 h a positive result f a newborn    
scre5+ program2  7,b7 h "o or m         
neurodevelopm5tal or cong5ital          

anomalies2  7,c7 are exp]i5c+           
developm5tal delay or intellectual      
disability2  7,d7 are hav+ seizures2    
7,e7 h be5 ref]r$ or admitt$ to a       
p$iatric or neonatal int5sive c>e unit =
 a *ronic or undiagnos$ disease2  7,f7 h
 be5 se5 by at lea/ "o m$ical speciali/ 
= su* *ronic or undiagnos$ disease2 or  
7,g7 are suspect$ by at lea/ "o heal?c>e
 provid] to h a neonatal- or            
p$iatric-onset g5etic disease2  7#b7    
provide education & support to provid]s 
to m9imize d5ials ( claims = m$ical     
assi/ance "u ! ,/ate plan "u title ,,xix
 ( ! ,social ,security ,act result+ f   
defici5t or inadequate pap]work2 &  7#c7
 ensure t provid]s & ,m$icaid-eligible  
*ildr5 & ! families are aw>e ( ! ,e>ly &
 ,p]iodic ,scre5+1 ,diagno/ic &         
,treatm5t ,b5efit "u title ,,xix ( !    
,social ,security ,act & h access to    
requir$ scre5+s & necess>y treatm5t     
s]vices4  #c4 ,,demon/ration ,,program  
,,to ,,provide g5etic & g5omic te/+ =   
,,c]ta9 ,,*ildr5  7a7 ,9 g5]al ,!       

,secret>y ( ,heal? & ,human ,s]vices    
%all ent] into agreem5ts ) up to #ae    
,/ates submitt+ applications "u         
subsection 7c7 = ! purpose ( conduct+1 9
 accordance ) ?is section1 #c-ye>       
demon/ration projects "u section #aaae (
 ! ,social ,security ,act 7#db ,u4,s4,c4
 #acae7 9 su* ,/ates dur+ ! #c-ye> p]iod
 beg9n+ on ! fir/ date ( ! fir/ fiscal  
qu>t] ?an beg9s on or aft] ! date ( !   
enactm5t ( ?is section to te/ & evaluate
 ! provision ( m$ical assi/ance "u !    
,/ate plans "u title ,,xix ( su* ,act   
7or waiv]s ( su* plans7 to eligible     
individuals = purposes ( provid+ su*    
individuals ) g5etic & g5omic te/+4  7b7
 ,demon/ration project paym5t           
requirem5ts ,"u ea* demon/ration project
 "u ?is section conduct$ by a ,/ate1 !  
foll[+ %all apply3 7#a7 ,! ,/ate %all   
provide a heal? c>e provid] 7z def9$ by 
! ,/ate7 ) paym5ts = ! provision (      
g5etic & g5omic te/+ to any eligible    
individual4 ,paym5ts made to a heal? c>e
 provid] = su* s]vices %all be treat$ z 

m$ical assi/ance = purposes ( section   
#aijc7;a7 ( ! ,social ,security ,act    
7#db ,u4,s4,c4 #acif;b7a771 except t !  
,f$]al m$ical assi/ance p]c5tage        
applicable to su* paym5ts %all be equal 
to #ajj p]c5t4  7#b7 ,! ,/ate %all      
specify ! me?odology ! ,/ate w use =    
det]m9+ paym5t = ! provision ( g5etic & 
g5omic te/+4 ,su* me?odology = det]m9+  
paym5t %all be e/abli%$ consi/5t )      
section #aijb7;a77#cj77;,a7 ( su* ,act  
7#db ,u4,s4,c4 #acif;a7a77#cj77;,a774   
7c7 ,applications  7#a7 ,9 g5]al ,a     
,/ate desir+ to ent] into an agreem5t "u
 subsection 7a7 ) ! ,secret>y = conduct+
 a demon/ration project %all submit to !
 ,secret>y an application1 9 accordance 
) su* =m & mann]1 & application         
priorities1 z specifi$ by ! ,secret>y & 
t at a m9imum includes ! foll[+3 7,a7   
,an explanation ( h[ & ! ext5t to :i*   
g5etic & g5omic te/+ "u ! demon/ration  
project ( ! ,/ate w provide in=mation & 
data on h[ su* s]vices improve !        
diagnosis ( eligible individuals4  7,b7 

,an explanation ( h[ & ! ext5t to :i*   
cov]age "u ! ,/ate plan 7or waiv]7      
pursuant to ! demon/ration project w    
increase ! use ( g5etic & g5omic te/+ t 
may increase ! use ( g5etic & g5omic    
te/+ t may improve cl9ical outcomes =   
eligible individuals4  7,c7 ,proc$ures =
 ref]r+ any eligible individual :o seeks
 or ne$s treatm5t 9 a hospital em]g5cy  
dep>tm5t to a heal? c>e provid] :o is   
qualifi$ 7z det]m9$ by ! ,/ate7 to      
provide g5etic & g5omic te/+4  7,d7 ,an 
explanation ( h[ g5etic & g5omic te/+   
may improve heal? outcomes = all        
populations 9 ! ,/ate1 includ+-- 7i7    
individuals ) a r>e g5etic disease1     
includ+ a metabolic disease1 neurologic 
disord]s1 or h]$it>y canc] te/+ 9 !     
pres5ce ( a suspect$ or confirm$ canc]  
diagnosis2 &  7ii7 special populations1 
includ+ infants & *ildr5 :o are         
critically ill 7non-infecti\s &         
non-trauma7 pati5ts1 transplant pati5ts1
 individuals ) c>diac disease1 &        
individuals )1 or :o h a family hi/ory  

(1 a bir? defect or developm5tal        
disability4  7#b7 ,pref]5ces 9 consid]+ 
applications ,9 consid]+ applications   
submitt$ "u p>agraph 7#a71 ! ,secret>y (
 ,heal? & ,human ,s]vices %all give     
pref]5ce to ,/ates t c demon/rate       
und]utilization ( g5etic & g5omic       
sequ5c+ cl9ical s]vices 7) priority giv5
 to ,/ates t d n cov] :ole-g5ome sequ5c+
 or d n cov] ! majority ( g5etic &      
g5omic cl9ical s]vices7 9 p$iatric      
populations "u ! ,/ate plan "u title    
,,xix ( ! ,social ,security ,act 7or    
waiv] ( su* plan74  7d7 ,te*nical       
assi/ance ,! ,secret>y ( ,heal? & ,human
 ,s]vices %all provide te*nical         
assi/ance to assi/ ,/ates 9 plann+ &    
design+ ! demon/ration project =        
purposes ( apply+ = conduct+ su* project
 "u ?is section4  7e7 ,reports by ,/ates
 ,n lat] ?an "o ye> aft] ! date on :i* a
 ,/ate ent]s into an agreem5t "u        
subsection 7a7 ) ! ,secret>y = conduct+ 
a demon/ration project1 ! ,/ate %all    
submit a report to ! ,adm9i/rator ( !   

,c5t]s = ,m$ic>e  ,m$icaid ,s]vices & ! 
,adm9i/rator ( ! ,heal? ,res\rces &     
,s]vices ,adm9i/ration on ! ext5t to :i*
 g5etic & g5omic te/+ improv$ outcomes &
 r$uc$ heal? disp>ities4 ,su* report    
%all include in=mation on ! numb] (     
pati5ts receiv+ g5etic & g5omic te/+1 ! 
types ( s]vices provid$1 & su* o!r      
in=mation z ! ,secret>y %all prescribe4 
7f7 ,reports by heal? c>e provid]s ,z a 
condition = receiv+ paym5t = g5etic &   
g5omic te/+ provid$ to an eligible      
individual "u a demon/ration project    
conduct$ by a ,/ate "u ?is section1 a   
heal? c>e provid] %all report to !      
,/ate1 9 accordance ) su* requirem5ts z 
! ,secret>y %all specify1 on all        
applicable measures = det]m9+ ! quality 
& efficacy ( su* s]vices4  7g7          
,def9itions ,9 ?is section3 7#a7        
,eligible individual ,! t]m eligible    
individual means1 ) respect to a ,/ate1 
an individual :o-- 7,a7 is eligible =   
m$ical assi/ance "u ! ,/ate plan "u     
title ,,xix ( ! ,social ,security ,act  

7or a waiv] ( su* plan72  7,b7 is "u !  
age ( #ba 7or1 at ! option ( ! ,/ate1 "u
 ! age ( #bj1 #ai1 or #ah z ! ,/ate may 
*oose71 or 9 ! case ( an individual     
describ$ 9 section                      
#aijb7;a77#aj77;,a77i77,,ix7 ( su* ,act 
7#db ,u4,s4,c4                          
#acif;a7a77#aj77;,a77i77,,ix771 "u ! age
 ( #bf2  7,c7 has be5 ref]r$ or admitt$ 
to an int5sive c>e unit1 or has be5 se5 
by at lea/ "o m$ical speciali/1 = a     
suspect$ g5etic or undiagnos$ disease2  
or  7,d7 is suspect$ by at lea/ "o      
m$ical speciali/ to h a neonatal-onset  
or p$iatric-onset g5etic disease4  7#b7 
,g5etic & g5omic te/+ ,! t]m g5etic &   
g5omic te/+1 ) respect to an eligible   
individual-- 7,a7 means ! det]m9ation ( 
a sequ5ce ( deoxyribonucleic acid bases 
9 ! g5ome ( su* individual1 &1 if = !   
sole b5efit ( ! individual1 a biological
 p>5t ( su* individual = ! purpose (    
det]m9+ :e!r "o or m pot5tially         
disease-caus+ g5etic v>iants are pres5t 
9 ! g5ome ( su* individual or su*       

biological p>5t2 &  7,b7 includes-- 7i7 
! sequ5c+ ( ! :ole g5ome1 ! :ole exome1 
or a panel ( g5es2 &  7ii7 any analysis1
 int]pretation1 & data report d]iv$ f   
su* sequ5c+4  #d4 ,national ,academy (  
,m$ic9e /udy  7a7 ,9 g5]al ,n lat] ?an  
"o ye> aft] ! date ( ! enactm5t ( ?is   
,act1 ! ,secret>y ( ,heal? & ,human     
,s]vices %all ent] into an arrangem5t ) 
! ,national ,academy ( ,m$ic9e "u :i* ! 
,academy agrees to /udy-- 7#a7 h[ g5etic
 & g5omic te/+ may improve prev5tative  
c>e & precision m$ic9e2  7#b7 disp>ities
 9 access to precision diagno/ics &     
associat$ !rapeutics2  7#c7 h[ g5etic & 
g5omic te/+ may be us$ to r$uce heal?   
disp>ities 9 m>g9aliz$ communities2     
7#d7 h[ ! ,f$]al ,gov]nm5t may help to  
r$uce b>ri]s to g5etic & g5omic te/+1   
includ+-- 7,a7 enc\rag+ ! expansion (   
heal? insurance cov]age ( g5etic &      
g5omic te/+1 includ+ diagno/ic1         
pr$ictive1 & presymptomatic te/+1 &     
g5etic & g5omic te/+ 7z def9$ 9 section 
#b7;h77#b772  7,b7 support+ ! collection

 ( evid5ce = ! cl9ical utility &        
appropriate use ( g5etic & g5omic te/s2 
&  7,c7 improv+ access to g5etic        
c\nselors1 pa?ologi/s1 & o!r relevant   
pr(essions1 includ+ /r5g!n+ relat$      
work=ce education & tra9+ ef=ts2  7#e7  
7,a7 ! ext5t to :i* cov]age provisions 9
 ! ,m$ic>e & ,m$icaid programs "u titles
 ,,xviii & ,,xix ( ! ,social ,security  
,act 7#db ,u4,s4,c4 #acie et seq41 #acif
 et seq47 may re/ra9 ! use ( g5etic &   
g5omic te/+ t may improve cl9ical       
outcomes = b5efici>ies2  7,b7 ! ext5t to
 :i* cov]age provid$ pursuant to section
 #b increas$ ! use ( g5etic & g5omic    
te/+ & improv$ cl9ical outcomes =       
b5efici>ies2 &  7,c7 h[ ! ,c5t]s =      
,m$ic>e  ,m$icaid ,s]vices may make     
cov]age det]m9ations t bett] suit a     
precision m$ic9e approa* to treatm5t2 & 
7#f7 h[ g5etic & g5omic te/+ may improve
 heal? outcomes = all p$iatric          
populations 9 ! ,unit$ ,/ates1 includ+--
 7,a7 *ildr5 ) a r>e disease1 includ+ a 
metabolic disease1 neurologic disord]1  

or h]$it>y canc] te/+ 9 ! pres5ce ( a   
suspect$ or confirm$ canc] diagnosis2 & 
7,b7 special populations1 includ+-- 7i7 
critically ill 7non-infecti\s &         
non-trauma7 pati5ts2  7ii7 transplant   
pati5ts2  7iii7 individuals ) c>diac    
disease2 &  7iv7 individuals )1 or :o h 
a family hi/ory (1 a bir? defect or     
developm5tal disability4  7b7 ,report   
7#a7 ,9 g5]al ,! arrangem5t "u          
subsection 7a7 %all provide = !         
,national ,academy ( ,m$ic9e to submit1 
n lat] ?an #b ye>s aft] ! date (        
enactm5t ( ?is ,act1 a report on !      
results ( ! /udy "u subsection 7a7 to-- 
7,a7 ! ,secret>y ( ,heal? & ,human      
,s]vices2  7,b7 ! ,committee on ,ways & 
,means & ! ,committee on ,en]gy &       
,comm]ce ( ! ,h\se ( ,repres5tatives2 & 
7,c7 ! ,committee on ,f9ance & !        
,committee on ,heal?1 ,education1       
,labor1 & ,p5sions ( ! ,s5ate4  7#b7    
,consultation ,! arrangem5t "u          
subsection 7a7 %all provide = !         
,national ,academy ( ,m$ic9e1 9 develop+

 ! report requir$ by p>agraph 7#a71 to  
consult ) physicians1 o!r heal?         
pr(essionals1 heal? educators1 heal?    
pr(essional organizations1 relevant     
companies1 pati5ts1 pati5t              
organizations1 ! ,heal? ,res\rces &     
,s]vices ,adm9i/ration1 ! ,national     
,canc] ,in/itute1 ! ,national ,in/itutes
 ( ,heal?1 ! ,ag5cy = ,heal?c>e ,rese>* 
& ,quality1 & ! ,c5t]s = ,m$ic>e        
,m$icaid ,s]vices4  7#c7 ,use (         
in=mation ,! ,national ,academy (       
,m$ic9e %all1 to ! ext5t possible1 9    
conduct+ ! /udy "u subsection 7a71      
utilize in=mation includ$ 9 ! reports   
submitt$ pursuant to subsections 7f7 &  
7g7 ( section #b4  #e4 ,c5t]s = ,m$ic>e 
,m$icaid ,s]vices report on ,m$icaid    
,cov]age = g5etic & g5omic te/+ ,n lat] 
?an "o ye> aft] ! date ( ! enactm5t (   
?is ,act1 & annually !reaft] = !        
subsequ5t #c ye>s1 ! ,c5t]s = ,m$ic>e   
,m$icaid ,s]vices %all submit to !      
,secret>y ( ,heal? & ,human ,s]vices1 ! 
,committees on ,ways & ,means & on      

,en]gy & ,comm]ce ( ! ,h\se (           
,repres5tatives1 & ! ,committees on     
,f9ance & ,heal?1 ,education1 ,labor1 & 
,p5sions ( ! ,s5ate a report on ! ext5t 
to :i* ea* ( ! #ej ,/ates provide       
cov]age "u ! ,/ate plan "u title ,,xix (
 ! ,social ,security ,act 7or waiv] (   
su* plan7 ( g5etic & g5omic te/+ 7z     
def9$ 9 section #b7;f77#b77 7includ+    
:ole exome1 :ole g5ome1 g5e panels1 s+le
 g5e te/s1 ,*romosomal micro>ray        
analysis1 ,fluoresc5ce 9 situ           
hybridization1 & o!r g5etic & g5omic    
te/s71 includ+ in=mation on-- 7#a7 h[   
(t5 g5etic & g5omic diagno/ic te/+      
s]vices are cov]$ & reimburs$2  7#b7 !  
frequ5cy ( d5ials = cov]age & !         
rationale = d5y+ cov]age2  7#c7 an      
analysis ( :i* g5etic & g5omic diagno/ic
 te/s are be+ approv$ or d5i$2  7#d7 h[ 
(t5 te/ g5etic c\nsel+ is cov]$ pre- &  
po/-g5etic & g5omic diagno/ic te/+2     
7#e7 ! turn-ar\nd "t = prior            
au?orization reque/s2 &  7#f7 any b>ri]s
 to cov]age ( g5etic & g5omic te/+      

s]vices id5tifi$4