,,ii #aai? ,,congress #a/ ,session ,s4 #did ,,9 ,,! ,,s5ate ,,( ,,! ,,unit$ ,,/ates ,febru>y #aj1 #bjbe,mr4 ,s*mitt 7= himself1 ,ms4 ,klobu*>1 ,mr4 ,boozman1 & ,ms4 ,hassan7 introduc$ ! foll[+ bill2 :i* 0 read twice & ref]r$ to ! ,committee on ,heal?1 ,education1 ,labor1 & ,p5sions ,a ,,bill ,to e/abli% a national plan to coord9ate rese>* on epilepsy1 & = o!r purposes4 #a4 ,%ort title ,?is ,act may be cit$ z ! ,national ,plan = ,epilepsy ,act4 #b4 ,f9d+s ,congress f9ds z foll[s3 7#a7 ,epilepsy is a bra9 disord] t causes recurr+ & unprovok$ seizures & affects p ( all ages1 affect+ ne>ly #c1jjj1jjj adults & #def1jjj *ildr5 9 ! ,unit$ ,/ates4 7#b7 ,epilepsy & seizures c develop 9 any p]son at any age4 ,"o 9 #bf p w develop a =m ( epilepsy 9 _! lifetime1 ) p f all demographic gr\ps & walks ( life be+ impact$4 7#c7 ,9 approximately half ( all cases ( epilepsy1 ! und]ly+ cause ( ! disease is unkn[n4 7#d7 ,epilepsy is a spectrum disease compris$ ( _m diagnoses & an ev]-gr[+ numb] ( r>e epilepsies4 ,!re are _m diff]5t types ( seizures & v>y+ levels ( seizure control4 7#e7 ,ov] #cj p]c5t ( p ) epilepsy live ) uncontroll$ seizures4 7#f7 ,individuals ) epilepsy h a #c-times high] risk ( e>ly dea? ?an ! g5]al population & t risk is ev5 high] = individuals ) uncontroll$ seizures4 7#g7 ,?irty-two p]c5t ( adults ) epilepsy are unable to "w4 7#h7 ,fifty-?ree p]c5t ( individuals ) uncontroll$ seizures live 9 h\seholds e>n+ less ?an #be1jjj p] ye>4 7#i7 ,heal? c>e co/s associat$ ) epilepsy & seizures exce$ #ed1jjj1jjj1jjj p] ye> 9 ! ,unit$ ,/ates4 #c4 ,e/abli%+ a ,national ,plan = ,epilepsy ,"p ,b ( title ,,iii ( ! ,public ,heal? ,s]vice ,act 7#db ,u4,s4,c4 #bdc et seq47 is am5d$ by add+ at ! end ! foll[+3 #cbj;,c4 ,programs relat+ to epilepsy 7a7 ,national ,plan = ,epilepsy 7#a7 ,9 g5]al ,! ,secret>y %all c>ry out a national project1 to be kn[n z ! ,national ,plan = ,epilepsy 7ref]r$ to 9 ?is section z ! ,national ,plan71 to prev5t1 diagnose1 treat1 & cure epilepsy4 7#b7 ,activities ,9 c>ry+ out ! ,national ,plan1 ! ,secret>y %all-- 7,a7 e/abli%1 ma9ta91 & p]iodically update an integrat$ national plan to prev5t1 diagnose1 treat1 & cure epilepsy2 7,b7 provide in=mation1 includ+ an e/imate ( ! level ( ,f$]al inve/m5t 9 prev5t+1 diagnos+1 treat+1 & cur+ epilepsy2 7,c7 coord9ate rese>* & s]vices relat$ to epilepsy1 across all ,f$]al ag5cies2 7,d7 enc\rage ! developm5t ( safe & effective treatm5ts1 /rategies1 & o!r approa*es to prev5t1 diagnose1 treat1 & cure epilepsy or to enhance function+ & improve quality ( life = individuals ) epilepsy & _! c>egiv]s2 7,e7 improve !-- 7i7 e>ly diagnosis ( epilepsy2 & 7ii7 coord9ation ( ! c>e & treatm5t ( individuals liv+ ) epilepsy2 7,f7 review ! impact ( epilepsy on ! physical1 m5tal1 & social heal? ( individuals liv+ ) epilepsy & _! c>egiv]s2 7,g7 solicit public comm5ts & consid] cons5sus recomm5dations f collaborations 9 ! epilepsy community2 7,h7 c>ry out an annual assessm5t on progress ( ! activities describ$ 9 ?is subsection2 7,i7 coord9ate ) int]national bodies1 to ! degree possible1 to integrate & in=m ! global mission to prev5t1 diagnose1 treat1 & cure epilepsy2 & 7,j7 c>ry out o!r su* activities z ! ,secret>y det]m9es appropriate4 7b7 ,annual assessm5t ,n lat] ?an #b ye>s aft] ! date ( enactm5t ( ! ,national ,plan = ,epilepsy ,act1 & annually !reaft]1 ! ,secret>y %all c>ry out an assessm5t ( ! ,nation's progress 9 prep>+ = & respond+ to ! escalat+ burd5 ( epilepsy4 ,su* assessm5t %all include-- 7#a7 recomm5dations = priority actions2 7#b7 a description ( ! /eps t h be51 or %\ld be1 tak5 to implem5t su* recomm5dations2 & 7#c7 su* o!r items z ! ,secret>y det]m9es appropriate4 7c7 ,advisory ,c\ncil 7#a7 ,9 g5]al ,! ,secret>y %all e/abli% & ma9ta9 an ,advisory ,c\ncil on ,epilepsy ,rese>*1 ,c>e1 & ,s]vices 7ref]r$ to 9 ?is section z ! ,advisory ,c\ncil7 to advise ! ,secret>y on epilepsy-relat$ issues4 7#b7 ,memb]%ip ,! ,advisory ,c\ncil %all be compris$ (-- 7,a7 repres5tatives appo9t$ by ! ,secret>y f relevant ,f$]al dep>tm5ts & ag5cies1 includ+-- 7i7 ! ,national ,in/itutes ( ,heal?2 7ii7 ! ,c5t]s = ,m$ic>e ,m$icaid ,s]vices2 7iii7 ! ,c5t]s = ,disease ,control & ,prev5tion2 7iv7 ! ,food & ,drug ,adm9i/ration2 7v7 ! ,heal? ,res\rces & ,s]vices ,adm9i/ration2 7vi7 ! ,dep>tm5t ( ,def5se2 & 7vii7 ! ,dep>tm5t ( ,vet]ans ,affairs2 & 7,b7 exp]t non-,f$]al memb]s appo9t$ by ! ,secret>y t reflect ! div]sity ( epilepsy1 includ+-- 7i7 #d individuals1 ea* ( :om is liv+ ) a diff]5t type ( epilepsy2 7ii7 #b family c>egiv]s = individuals ) epilepsy2 7iii7 #b lic5s$ or accr$it$ heal? c>e provid]s support$ by a relevant pr(essional m$ical society1 includ+ at lea/ #a epileptologi/ or neurologi/2 7iv7 #b biom$ical rese>*]s ) epilepsy-relat$ exp]tise 9 basic1 translational1 or cl9ical population sci5ce or drug developm5t sci5ce2 & 7v7 #c repres5tatives f #c sep>ate nonpr(it organizations directly connect$ ) epilepsy t h demon/rat$ exp]i5ce 9 epilepsy rese>* or epilepsy pati5t c>e & o!r s]vices4 7#c7 ,meet+s 7,a7 ,9 g5]al ,! ,advisory ,c\ncil %all meet at lea/ once ea* qu>t]4 7,b7 ,meet+s ) o!r exp]ts ,n lat] ?an #b ye>s aft] ! date ( enactm5t ( ! ,national ,plan = ,epilepsy ,act1 & e #b ye>s !reaft]1 ! ,advisory ,c\ncil %all conv5e a meet+ ( ,f$]al & non-,f$]al organizations to discuss epilepsy rese>*4 7,c7 ,public meet+s ,all meet+s ( ! ,advisory ,c\ncil %all be op5 to ! public4 7#d7 ,report+ ,n lat] ?an #ah mon?s aft] ! date ( enactm5t ( ! ,national ,plan = ,epilepsy ,act1 & e #b ye>s !reaft]1 ! ,advisory ,c\ncil %all provide to ! ,secret>y & ,congress a report conta9+-- 7,a7 an evaluation ( all f$]ally fund$ ef=ts 9 prev5t+1 diagnos+1 treat+1 & cur+ epilepsy1 & ! outcomes ( su* ef=ts2 7,b7 recomm5dations = priority actions to bett] coord9ate1 exp&1 & bett] support ,f$]al programs 9 ord] to bett] support p ) epilepsy1 epilepsy rese>*1 & data collection2 7,c7 recomm5dations to-- 7i7 provide effective1 timely1 & responsive diagnosis treatm5t & c>e to improve heal? outcomes & quality ( life2 7ii7 fo/] rese>* & innovation lead+ to m effective treatm5ts & pot5tial cures = epilepsy2 7iii7 /r5g!n data & in=mation sy/ems includ+ bett] surveillance ( epilepsy2 7iv7 increase public aw>5ess ab\t epilepsy & r$uce /igma & discrim9ation2 7v7 increase access to exp]t & specializ$ c>e = p ) epilepsy2 7vi7 elim9ate access to c>e disp>ities exp]i5c$ by individuals ) epilepsy2 7vii7 prev5t sudd5 unexpect$ dea? 9 epilepsy & o!r epilepsy-relat$ mortalities2 7viii7 r$uce ! f9ancial impact ( epilepsy on families liv+ ) epilepsy2 7ix7 prev5t epilepsy & promote heal?y behaviors2 & 7x7 an evaluation ( ! implem5tation ( ! ,national ,plan1 & its outcomes4 7d7 ,annual reports ,! ,secret>y %all annually submit to ,congress a report t includes-- 7#a7 an evaluation ( all f$]ally fund$ ef=ts 9 epilepsy rese>*1 prev5tion1 diagnosis1 treatm5t1 cl9ical c>e1 & in/itutional-1 home-1 & community-bas$ programs1 & ! outcomes ( su* ef=ts2 7#b7 recomm5dations =-- 7,a7 priority actions bas$ on ! mo/ rec5t assessm5t submitt$ by ! ,secret>y "u subsection 7b7 & ! recomm5dations conta9$ 9 ! mo/ rec5t report ( ! ,advisory ,c\ncil "u subsection 7c77#d72 7,b7 priority actions to improve all f$]ally fund$ ef=ts 9 epilepsy rese>*1 prev5tion1 diagnosis1 treatm5t1 cl9ical c>e1 & in/itutional-1 home-1 & community-bas$ programs2 & 7,c7 implem5tation /eps to address priority actions describ$ 9 subp>agraphs 7,a7 & 7,b72 & 7#c7 a description ( ! progress made 9 c>ry+ out ! ,national ,plan4 7e7 ,data %>+ ,ag5cies bo? )9 ! ,dep>tm5t ( ,heal? & ,human ,s]vices & outside ( su* ,dep>tm5t t h data relat+ to epilepsy %all %>e su* data ) ! ,secret>y z necess>y to enable ! ,secret>y to complete ! reports describ$ 9 subsection 7d74 7f7 ,sunset ,?is section %all cease to be effective on ,decemb] #ca1 #bjce4 4