,i #aah? ,,congress #a/ ,session ,h4 ,r4 #fgij ,,9 ,,! ,,h\se ,,( ,,repres5tatives ,decemb] #ad1 #bjbc,mr4 ,bilirakis 7= himself & ,ms4 ,sewell7 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 am5d ! ,public ,heal? ,s]vice ,act ) respect to prev5t+ end-/age kidney disease1 & = o!r purposes4 #a4 ,%ort title ,?is ,act may be cit$ z ! ,new ,era ( ,prev5t+ ,end-,/age ,kidney ,disease ,act4 #b4 ,c5t]s ( ,excell5ce on ,r>e ,kidney ,disease ,rese>* 9 ,national ,in/itute ( ,diabetes & ,dige/ive & ,kidney ,diseases ,subp>t #c ( "p ,c ( title ,,iv ( ! ,public ,heal? ,s]vice ,act 7#db ,u4,s4,c4 #bha et seq47 is am5d$ by ins]t+ aft] section #dbf 7#db ,u4,s4,c4 #bhe;c7 ! foll[+ new section3 #dbf;,a4 ,c5t]s ( ,excell5ce on ,r>e ,kidney ,disease ,rese>* 9 ,national ,in/itute ( ,diabetes & ,dige/ive & ,kidney ,diseases 7a7 ,coop]ative agreem5ts & grants 7#a7 ,9 g5]al ,! ,director ( ! ,in/itute may ent] into coop]ative agreem5ts )1 & make grants to1 public & private nonpr(it entities to pay all or "p ( ! co/ ( plann+1 e/abli%+1 or /r5g!n+1 & provid+ basic op]at+ support =1 regional c5t]s ( excell5ce = r>e kidney diseases1 includ+ prim>y glom]ul> disease4 ,su* c5t]s ( excell5ce %all be kn[n z ,,niddk ,c5t]s ( ,excell5ce on ,r>e ,kidney ,disease ,rese>* 7ref]r$ to 9 ?is section z ,c5t]s ( ,excell5ce74 7#b7 ,purposes ( c5t]s ,! purposes ( ! ,c5t]s ( ,excell5ce fund$ pursuant to p>agraph 7#a7 %all be-- 7,a7 to conduct rese>* on ! causes1 etiology1 symptoms1 diagnosis1 progression1 & treatm5t ( r>e kidney diseases1 includ+ glom]ul> diseases2 7,b7 to increase public aw>5ess ( r>e kidney diseases1 p>ticul>ly 9 rural & und]s]v$ communities2 & 7,c7 to develop res\rces = cl9ical rese>* into1 tra9+ 91 & demon/ration ( diagno/ic1 prev5tion1 control1 & treatm5t me?ods =1 r>e kidney diseases4 7#c7 ,policies ,a coop]ative agreem5t or grant "u p>agraph 7#a7 %all be ent]$ into 9 accordance ) policies e/abli%$ by ! ,director ( ! ,national ,in/itutes ( ,heal?4 7b7 ,coord9ation ) o!r in/itutes ,! ,director ( ! ,in/itute %all coord9ate ! activities "u ?is section ) simil> activities t are relat$ to r>e kidney disease & conduct$ by o!r national rese>* in/itutes1 c5t]s1 & ag5cies ( ! ,national ,in/itutes ( ,heal? & by ! ,food & ,drug ,adm9i/ration4 7c7 ,use ( funds ,an entity t ent]s into a coop]ative agreem5t or receives a grant "u subsection 7a7 may use funds receiv$ ?r\gh su* agreem5t or grant-- 7#a7 to cov] pati5t c>e co/s requir$ to conduct rese>* describ$ 9 subsection 7a77#b77;,a72 7#b7 to provide1 = ! purpose describ$ 9 subsection 7a77#b77;,b7-- 7,a7 cl9ical tra9+ & cont9u+ education = heal? pr(essionals & relat$ p]sonnel ) respect to r>e kidney diseases2 & 7,b7 in=mation programs = ! public1 ) respect to r>e kidney diseases2 & 7#c7 to provide1 = ! purpose describ$ 9 subsection 7a77#b77;,b7-- 7,a7 = education ( memb]s ( ! public1 p>ticul>ly ?r\gh outrea* to rural & und]s]v$ communities1 on ! diagnosis 7includ+ ?r\gh r\t9e ur9alysis & ?r\gh g5etic te/+71 prev5tion1 control1 & treatm5t ( r>e kidney diseases2 & 7,b7 = education ( individuals diagnos$ ) r>e kidney diseases on r5al diet & life/yle1 g5etic te/+1 & programs to promote ur9alysis1 & on m5tal & emotional heal? res\rces = families ( r>e kidney disease pati5ts4 7d7 ,rese>* fund$ ,rese>* conduct$ us+ funds aw>d$ ?r\gh a coop]ative agreem5t or grant "u ?is section-- 7#a7 %all include /udy ( g5otype-ph5otype relation to disease progression2 & 7#b7 ) respect ! populations /udi$ 9 su* rese>*1 may n include any consid]ation ( quality-adju/$ life ye>s or disability adju/$ life ye>s1 or o!r simil> me*anisms t discrim9ate aga9/ individuals ) disabilities 9 value & co/-effectiv5ess assessm5ts4 7e7 ,p]iod ( support2 additional p]iods ,! p]iod ( support = a c5t] ( excell5ce "u subsection 7a7 may n exce$ #e ye>s1 except t su* p]iod may be ext5d$ by ! ,director ( ! ,in/itute = additional p]iods ( n m ?an #e ye>s = ea* c5t] if-- 7#a7 ! op]ations ( su* c5t] h be5 review$ by an appropriate te*nical & sci5tific pe] review gr\p e/abli%$ by ! ,director ( ! ,in/itute2 & 7#b7 su* gr\p has recomm5d$ to ! ,director ( ! ,in/itute t su* p]iod %\ld be ext5d$4 7f7 ,au?orization ( appropriations ,to c>ry out ?is section1 !re are au?oriz$ to be appropriat$ #f1jjj1jjj = ea* ( fiscal ye>s #bjbd ?r\gh #bjbh4 4 #c4 ,und]/&+ & ,sl[+ ! ,progression ( ,r>e ,kidney ,disease ,?r\gh ,e>ly ,int]v5tion1 ,te/+1 & ,treatm5t 7a7 ,9 g5]al ,! ,secret>y %all conduct a /udy on te/+1 prev5tative c>e1 precision m$ic9e1 & treatm5t1 ) respect to r>e kidney disease4 ,su* /udy %all review-- 7#a7 ! impact ( r\t9e ur9alysis on ! timely diagnosis ( r>e kidney disease & on ! quality ( pati5t c>e foll[+ a diagnosis ( su* disease2 7#b7 ! quality & reliability ( kidney biopsy 9 ! diagnosis ( r>e kidney disease2 7#c7 ! utility & appropriate use ( g5etic & g5omic te/s 9 detect+ kidney disease1 includ+-- 7,a7 advances 9 g5etic & g5omic te/+1 & 9 p>ticul> te/+ ( ! ,,apol#a g5e1 & :e!r su* te/+ may improve ! diagnosis & treatm5t ( r>e kidney disease2 7,b7 b>ri]s to g5etic & g5omic te/+1 su* z diagno/ic1 pr$ictive1 presymptomatic te/+1 & ,,dna sequ5c+ cl9ical s]vices1 includ+ an analysis ( any exi/+ b>ri]s relat$ to heal? insurance cov]age ( su* te/+ & access to g5etic c\nselors1 pa?ologi/s1 & o!r relevant pr(essions2 & 7,c7 /rategies to increase r\t9e ur9alysis & o!r diagno/ic te/+ & to improve te*nologies to diagnose su* disease1 includ+ g5etic te/+1 & to improve access to heal? insurance cov]age ( su* diagno/ic te/+ & te*nologies2 7#d7 ! social1 behavioral1 & biological factors lead+ to r>e kidney disease2 7#e7 treatm5t patt]ns associat$ ) provid+ c>e1 "u ! ,m$ic>e program "u title ,,xviii ( ! ,social ,security ,act 7#db ,u4,s4,c4 #acie et seq471 ! ,m$icaid program "u title ,,xix ( su* ,act 7#db ,u4,s4,c4 #acif et seq471 & ?r\gh private heal? insurance1 to populations t are disproportionately affect$ by su* disease2 7#f7 access to nephrologi/s among populations t are disproportionately affect$ by su* disease2 7#g7 ongo+ ef=ts & recomm5dations to sl[ ! progression ( end-/age kidney disease 9 populations t are disproportionately affect$ by r>e kidney disease2 & 7#h7 pati5t tru/ ( treat+ provid]s among populations t are disproportionately affect$ by su* disease4 7b7 ,report 7#a7 ,9 g5]al ,n lat] ?an #ah mon?s aft] ! date ( ! enactm5t ( ?is ,act1 ! ,secret>y %all submit to ! ,congress a report on ! results ( ! /udy "u subsection 7a71 toge!r ) su* recomm5dations z ! ,secret>y det]m9es to be appropriate4 7#b7 ,consultation ,9 conduct+ ! /udy "u subsection 7a7 & develop+ ! report requir$ by p>agraph 7#a71 ! ,secret>y %all consult ) relevant /akehold]s1 includ+ heal? c>e provid]s1 m$ical pr(essional societies1 ,/ate-bas$ societies1 public heal? exp]ts1 heal? educators1 heal? pr(essional organizations1 drug & device manufactur]s1 pati5t organizations1 ph>maci/s1 payors1 ,/ate & local public heal? dep>tm5ts1 ,/ate m$ical bo>ds1 & o!r entities ) exp]i5ce 9 heal? c>e1 public heal?1 nephrology1 & r>e disease1 z appropriate4 7c7 ,coord9ation ,9 c>ry+ out ! activities "u subsections 7a7 & 7b71 ! ,secret>y %all coord9ate ) ! ,director ( ,,nih1 ! ,adm9i/rator ( ! ,c5t] = ,m$ic>e ,m$icaid ,s]vices1 ! ,adm9i/rator ( ! ,heal? ,res\rces & ,s]vices ,adm9i/ration1 & ! ,director ( ! ,c5t] = ,m$ic>e & ,m$icaid ,innovation4 7d7 ,au?orization ( appropriations ,to c>ry out ?is section1 !re is au?oriz$ to be appropriat$ #a1jjj1jjj = ea* ( fiscal ye>s #bjbd ?r\gh #bjbh4 #d4 ,provid] education 7a7 ,prim>y c>e tra9+ ,section #gdg7;b77#c77;,e7 ( ! ,public ,heal? ,s]vice ,act 7#db ,u4,s4,c4 #bick7b77#c77;,e77 is am5d$-- 7#a7 by /rik+ & individuals & ins]t+ 1 individuals2 & 7#b7 by ins]t+ 1 & individuals ) kidney disease 7includ+ r>e kidney disease7 aft] disabilities4 7b7 ,nephrology fell[%ips ,section #gcf7;b7 ( ! ,public ,heal? ,s]vice ,act 7#db ,u4,s4,c4 #bic7 is am5d$-- 7#a7 by r$esignat+ p>agraph 7#g7 z p>agraph 7#h72 7#b7 9 p>agraph 7#f77;,b71 by /rik+ 2 & & ins]t+ a semicolon2 & 7#c7 by ins]t+ aft] p>agraph 7#f7 ! foll[+3 7#g7 to aw>d fell[%ips1 :i* may include /ip5ds1 = po/graduate tra9+ 9 ! field ( nephrology1 = ! purposes (-- 7,a7 increas+ provid]s' k ( issues relat$ to prev5tion1 diagnosis1 & treatm5t ( r>e kidney disease = populations disproportionately impact$ by ! disease1 includ+ ! preval5ce ( ! g5e ,,apol#a2 7,b7 improv+ ! quality ( r>e kidney disease prev5tion1 diagnosis1 & treatm5t deliv]$ to racial & e?nic m9orities2 & 7,c7 increas+ ! numb] ( nephrologi/s tra9$ to provide c>e to su* populations2 & 4 #e4 ,delay+ kidney disease impact ,section #ahha7;f7 ( ! ,social ,security ,act 7#db ,u4,s4,c4 #acierr7f77 is am5d$ by add+ at ! end ! foll[+ new p>agraph3 7#i7 7,a7 ,! ,secret>y %all conduct exp]im5ts to evaluate me?ods = treat+ r>e kidney disease1 giv+ p>ticul> att5tion to treatm5ts t w\ld delay or elim9ate ! ne$ = dialysis & transplant4 7,b7 ,! ,secret>y %all conduct a compreh5sive /udy ( me?ods to increase public aw>5ess ( r>e kidney disease4 7,c7 ,! ,secret>y %all submit to ,congress1 n lat] ?an #bd mon?s aft] ! date ( ! enactm5t ( ! ,new ,era ( ,prev5t+ ,end-,/age ,kidney ,disease ,act1 a report on ! exp]im5ts & /udy conduct$ "u subp>agraphs 7,a7 & 7,b74 ,su* report %all include recomm5dations = legislative *anges t ! ,secret>y f9ds necess>y or desirable z a result ( su* exp]im5ts & /udy4 4