,,ii #aae? ,,congress #b;d ,session ,s4 #bchg ,,9 ,,! ,,s5ate ,,( ,,! ,,unit$ ,,/ates ,febru>y #g1 #bjah,mrs4 ,capito 7= h]self1 ,ms4 ,/ab5[1 ,mr4 ,wick]1 & ,mr4 ,m55dez7 introduc$ ! foll[+ bill2 :i* 0 read twice & ref]r$ to ! ,committee on ,f9ance ,a ,,bill ,to provide bett] c>e & outcomes = ,am]icans liv+ ) ,alzheim]'s disease & relat$ dem5tias & _! c>egiv]s :ile accel]at+ progress t[>d prev5tion /rategies1 disease modify+ treatm5ts1 &1 ultimately1 a cure4 #a4 ,%ort title2 table ( cont5ts2 f9d+s 7a7 ,%ort title ,?is ,act may be cit$ z ! ,conc5trat+ on ,high-value ,alzheim]'s ,ne$s to ,get to an ,end 7,,*ange7 ,act ( #bjah4 7b7 ,table ( cont5ts ,! table ( cont5ts ( ?is ,act is z foll[s3 ,sec4 #a4 ,%ort title2 table ( cont5ts2 f9d+s4 ,sec4 #b4 ,cognitive impairm5t detection b5efit 9 ! ,m$ic>e annual wellness visit & initial prev5tive physical exam9ation4 ,sec4 #c4 ,te/ ( c>e deliv]y models (f]+ a cont9uum ( compreh5sive c>e1 & c>egiv] support s]vices1 = pati5ts ) ,alzheim]'s disease & o!r dem5tias4 ,sec4 #d4 ,/ate innovation models = family c>egiv]s ( pati5ts ) ,alzheim]'s & relat$ dem5tias4 ,sec4 #e4 ,m$ic>e quality paym5t program4 ,sec4 #f4 ,report to ,congress on implem5tation ( ?is ,act4 ,sec4 #g4 ,/udy & report on regulatory & legislative *anges or ref9em5ts t w\ld accel]ate ,alzheim]'s disease rese>* progress4 7c7 ,f9d+s ,congress f9ds z foll[s3 7#a7 ,! numb] ( individuals 9 ! ,unit$ ,/ates ) ,alzheim]'s disease & relat$ dem5tias has m ?an d\bl$ s9ce #aihj &1 bas$ on ! trajectory ( ,alzheim]'s1 z _m z #ad to #af million individuals 9 ! ,unit$ ,/ates w h ,alzheim]'s by #bjej4 7#b7 ,alzheim]'s is ! only disease among ! top #aj causes ( dea? 9 ! ,unit$ ,/ates )\t an effective means ( prev5tion1 treatm5t1 or cure4 7#c7 ,9 #bjag1 ,alzheim]'s c>e w co/ ,m$ic>e & ,m$icaid an e/imat$ #age1jjj1jjj1jjj & by #bjej1 ,alzheim]'s disease w co/ ,m$ic>e & ,m$icaid z mu* z #geh1jjj1jjj1jjj4 7#d7 ,alzheim]'s exacts an emotional & physical toll on c>egiv]s1 result+ 9 high] incid5ce ( he>t disease1 canc]1 depression1 & o!r heal? consequ5ces4 7#e7 ,alzheim]'s disease disproportionately impacts wom5 & p ( color4 ,wom5 are twice z likely to develop ,alzheim]'s z !y are brea/ canc]4 ,african ,am]icans are ab\t two times m likely ?an ,:ite ,am]icans to h ,alzheim]'s disease & o!r dem5tias4 ,lat9os are ab\t "o & "o-half times m likely ?an ,:ite ,am]icans to h ,alzheim]'s disease & o!r dem5tias4 ,?is high] preval5ce translates into a high] dea? rate3 ,alzheim]'s dea?s increas$ #ee p]c5t among all ,am]icans betwe5 #aiii & #bjad1 :ile ! numb] 0 #ajg p]c5t = ,lat9os & #ii p]c5t = ,african ,am]icans4 7#f7 ,z _m z half ( ! e/imat$ #e1ajj1jjj ,am]ican s5iors ) ,alzheim]'s disease & o!r dem5tias h nev] receiv$ a diagnosis4 7#g7 ,an e>ly1 docum5t$ diagnosis1 communicat$ to ! pati5t & c>egiv]1 enables e>ly access to c>e plann+ s]vices & available m$ical & nonm$ical treatm5ts1 & optimizes pati5ts' ability to build a c>e team1 p>ticipate 9 support s]vices1 & enroll 9 cl9ical trials4 7#h7 ,! lack ( uni=m1 reliable cognitive impairm5t detection me?odologies 9 ! ,m$ic>e annual wellness visit1 & appropriate foll[-up1 delays diagnosis1 result+ 9 decreas$ opportunities = pati5ts to access timely treatm5t options1 includ+ cl9ical trial p>ticipation4 7#i7 ,african ,am]icans repres5t #ac p]c5t ( ! ,u4,s4 population b only #e p]c5t ( cl9ical trial p>ticipants & ,lat9os repres5t #ag p]c5t ( ! ,u4,s4 population b less ?an "o p]c5t ( cl9ical trial p>ticipants4 ,fur!r1 ,lat9os & ,african ,am]icans acc\nt = only #c4e p]c5t & #a4b p]c5t1 respectively1 ( pr9cipal inve/igators support$ by ! ,national ,in/itutes ( ,heal? fund+1 limit+ ?is p]spective 9 rese>*4 ,bett] recruitm5t & trial designs are critical to address+ innovation 9 ,alzheim]'s g5]ally1 includ+ ! und]repres5tation ( ,african ,am]icans & ,lat9os4 7#aj7 ,inability to id5tify eligible pati5ts at ! e>lie/ /ages ( disease is a sub/antial imp$im5t to effici5t rese>* t[>d ,alzheim]'s disease prev5tion1 treatm5t1 & cure4 7#aa7 ,advanc+ treatm5t options to prev5t1 treat1 or cure ,alzheim]'s is an urg5t national priority4 7#ab7 ,cont9u$ ,f$]al inve/m5t 9 ,alzheim]'s rese>* & ! implem5tation ( innovative programs1 su* z ! break?r\gh ,,eureka prize competition au?oriz$ 9 ! #ba/ ,c5tury ,cures ,act1 are critical to advance ! se>* to id5tify1 treat1 cure1 & prev5t ,alzheim]'s disease4 7#ac7 ,exi/+ heal? c>e sy/ems-- 7,a7 are co/ly2 7,b7 d n adequately meet ! ne$s ( ,alzheim]'s pati5ts2 7,c7 ov]burd5 familial c>egiv]s2 & 7,d7 p]petuate hurdles to effici5t ,alzheim]'s rese>*4 7#ad7 ,a p>adigm %ift to drive syn]gies betwe5 high-value pati5t c>e1 c>egiv] support1 & rese>* initiatives is our be/ hope = prev5t+1 treat+1 & cur+ ,alzheim]'s disease4 7#ae7 ,section #aaae;,a ( ! ,social ,security ,act1 z am5d$ by ! ,,pace ,innovation ,act ( #bjae1 enables id5tification ( ,alzheim]'s disease c>e models t focus on improv+ pati5t-c5t]$ outcomes1 r$uce ! burd5 on in=mal & familial c>egiv]s1 & facilitate cl9ical trial p>ticipation4 #b4 ,cognitive impairm5t detection b5efit 9 ! ,m$ic>e annual wellness visit & initial prev5tive physical exam9ation 7a7 ,annual wellness visit 7#a7 ,9 g5]al ,section #ahfa7;hhh77#b7 ( ! ,social ,security ,act 7#db ,u4,s4,c4 #aciex7hhh77#b77 is am5d$-- 7,a7 by /rik+ subp>agraph 7,d7 & ins]t+ ! foll[+3 7,d7 ,detection ( any cognitive impairm5t or progression ( cognitive impairm5t t %all-- 7i7 be p]=m$ us+ a cognitive impairm5t detection tool id5tifi$ by ! ,national ,in/itute on ,ag+ z meet+ its crit]ia = select+ in/rum5ts to detect cognitive impairm5t 9 ! prim>y c>e sett+1 & o!r validat$ cognitive detection tools z ! ,secret>y det]m9es2 7ii7 include docum5tation ( ! tool us$ = detect+ cognitive impairm5t & results ( ! assessm5t 9 ! pati5t's m$ical record2 & 7iii7 take into consid]ation ! tool us$1 & results (1 any previ\sly p]=m$ cognitive impairm5t detection assessm5t4 2 7,b7 by r$esignat+ subp>agraph 7,g7 z subp>agraph 7,h72 & 7,c7 by ins]t+ aft] subp>agraph 7,f7 ! foll[+ new subp>agraph3 7,g7 ,ref]ral ( pati5ts ) detect$ cognitive impairm5t or pot5tial cognitive decl9e to-- 7i7 appropriate ,alzheim]'s disease & dem5tia diagno/ic s]vices1 includ+ amyloid positron emission tomography1 & o!r m$ically accept$ diagno/ic te/s t ! ,secret>y det]m9es are safe & effective2 7ii7 speciali/s & o!r cl9icians ) exp]tise 9 diagnos+ or treat+ ,alzheim]'s disease & relat$ dem5tias2 7iii7 available community-bas$ s]vices1 includ+ pati5t & c>egiv] c\nsel+ & social support s]vices2 & 7iv7 appropriate cl9ical trials4 4 7#b7 ,effective date ,! am5dm5ts made by p>agraph 7#a7 %all apply to annual wellness visits furni%$ on or aft] ,janu>y #a1 #bjai4 7b7 ,initial prev5tive physical exam9ation 7#a7 ,9 g5]al ,section #ahfa7ww77#a7 ( ! ,social ,security ,act 7#db ,u4,s4,c4 #aciex7ww77#a77 is am5d$ by /rik+ p>agraph 7#b7 & & ins]t+ p>agraph 7#b71 detection ( any cognitive impairm5t or progression ( cognitive impairm5t z describ$ 9 subp>agraph 7,d7 ( subsection 7hhh77#b7 & ref]rals z describ$ 9 subp>agraph 7,g7 ( su* subsection1 &4 7#b7 ,effective date ,! am5dm5ts made by p>agraph 7#a7 %all apply to initial prev5tive physical exam9ations furni%$ on or aft] ,janu>y #a1 #bjai4 #c4 ,te/ ( c>e deliv]y models (f]+ a cont9uum ( compreh5sive c>e1 & c>egiv] support s]vices1 = pati5ts ) ,alzheim]'s disease & o!r dem5tias ,section #aaae;,a ( ! ,social ,security ,act 7#db ,u4,s4,c4 #acae;a7 is am5d$-- 7#a7 9 subsection 7b77#b77;,a71 by add+ at ! end ! foll[+ new s5t5ce3 ,! models select$ "u ?is subp>agraph %all include ! model describ$ 9 subsection 7h71 :i* %all be implem5t$ by n lat] ?an #f mon?s aft] ! date ( ! enactm5t ( ! ,conc5trat+ on ,high-value ,alzheim]'s ,ne$s to ,get to an ,end 7,,*ange7 ,act ( #bjah42 7#b7 by add+ at ! end ! foll[+ new subsection3 7h7 ,deliv]y models (f]+ a cont9uum ( compreh5sive c>e1 & c>egiv] support s]vices1 = pati5ts ) ,alzheim]'s disease & o!r dem5tias 7#a7 ,9 g5]al ,! models describ$ 9 ?is subsection are ,m$ic>e1 ,m$icaid1 or multi-pay] models t incorporate a compreh5sive cont9uum ( c>e framework1 su* z t conta9$ 9 ! ,program ( ,all-,inclusive ,c>e = ! ,eld]ly 7,,pace71 to individuals diagnos$ ) ,alzheim]'s disease or relat$ dem5tia1 at any /age4 7#b7 ,requirem5ts = models ,! models describ$ 9 ?is subsection %all include ! foll[+3 7,a7 ,! enrollm5t ( pati5ts diagnos$ ) ,alzheim]'s disease1 at any /age1 )\t reg>d to m$ical ne$ = skill$ nurs+ facility c>e or ,m$icaid eligibility4 7,b7 ,?r\gh case managem5t & c>e coord9ation s]vices1 ! (f]+ ( a flexible m5u ( s]vices1 bas$ ^u id5tifi$ pati5t ne$s ov] "t1 = high-quality1 appropriate c>e f diagnosis ?r\gh disease progression1 includ+ id5tification ( appropriate cl9ical trials4 7,c7 ,! employm5t ( a compreh5sive approa* to c>+ = pati5ts ) ,alzheim]'s disease or relat$ dem5tia t integrates treatm5t ( su* pati5ts ) tra9+ & support s]vices = _! families & c>egiv]s1 & facilitates p>ticipation 9 cl9ical trials4 ,su* s]vices may include-- 7i7 day heal?c>e1 includ+ heal? c>e s]vices & dem5tia-specific social1 rehabilitative1 recreational1 memory1 ex]cise1 nutritional c\nsel+1 occupational !rapy1 & p]sonal c>e s]vices2 7ii7 physician c>e1 includ+ ref]r$ speciali/s2 7iii7 respite c>e &1 = cl9ical trial p>ticipants1 c>e p>tn] surrogate s]vices z ne$$2 7iv7 m$ications & m$ication managem5t1 includ+ = cl9ical trial compliance2 7v7 nurs+ c>e1 & occupational1 physical1 & spee* !rapy z prescrib$2 7vi7 id5tification & managem5t ( comorbidities2 7vii7 social work] s]vices2 7viii7 meals at day heal? c>e &1 if ne$$1 at home2 7ix7 transportation to & f day heal? c>e & cl9ical trial /udy visits2 & 7x7 p]sonal c>e1 skill$ nurs+ s]vices1 & o!r s]vices ! ,secret>y det]m9es appropriate t-- 7,i7 incorporate c>egiv] tra9+1 support1 & c\nsel+ s]vices successfully evaluat$ & implem5t$ 9 previ\s or exi/+ models te/$ "u su* section #aaae;,a & t are specific to ,alzheim]'s disease pati5ts & _! c>egiv]s2 7,,ii7 ma9ta9 docum5tation & data likely to fur!r sci5tific und]/&+ ( ,alzheim]'s disease natural hi/ory1 tak+ into acc\nt g5d]1 race1 e?nicity1 age ( onset1 & o!r factors2 & 7,,iii7 provide outrea* activities to in=m ! public ( ! s]vices ( ! program1 & provide in=mation on ,alzheim]'s disease & relat$ dem5tias to ! prim>y c>e community & g5]al public4 7#c7 ,model selection & evaluation 7,a7 ,reque/s = proposals ,9 implem5t+ ! models describ$ 9 ?is subsection1 ! ,secret>y %all seek reque/s = proposals f ,/ates1 ,,pace programs 7z def9$ 9 section #ahid7;a77#b771 ,alzheim]'s disease & dem5tia c>e c5t]s1 & specializ$ ,,ma plans = special ne$s individuals 7z def9$ 9 section #ahei7;b77#f77 t h ! demon/rat$ ability to deliv] ! compreh5sive cont9uum ( dem5tia c>e describ$ 9 p>agraph 7#b74 7,b7 ,phase ,i models ,9 select+ models "u ?is subsection to be te/$ "u subsection 7b71 & 9 evaluat+ models1 ! ,secret>y %all prim>ily focus on pati5t & c>egiv] outcomes1 su* z-- 7i7 improv$ quality ( life2 7ii7 ma9ta9+ functional or cognitive p]=mance2 7iii7 managem5t ( comorbidities & behavioral & safety conc]ns2 & 7iv7 cont9u$ ability to rema9 9 ! community4 7,c7 ,phase ,,ii ,subject to ! requirem5ts "u subsection 7c71 9 det]m9+ :i* models "u ?is subsection to exp& "u subsection 7c71 ! ,secret>y %all take into acc\nt-- 7i7 any recomm5dations or /rategies id5tifi$ 9 ! report "u section #h ( ! ,conc5trat+ on ,high-value ,alzheim]'s ,ne$s to ,get to an ,end 7,,*ange7 ,act ( #bjah2 & 7ii7 :e!r ! model incorporates c>e deliv]y1 paym5t1 & evaluation /rategies t are likely to demon/rate improv$ pati5t outcomes1 includ+ ! outcomes describ$ 9 subp>agraph 7,b7 & r$uc$ hospitalizations1 em]g5cy room visits1 & skill$ nurs+ facility /ays1 )\t increas+ sp5d+ "u ! applicable title4 4 #d4 ,/ate innovation models = family c>egiv]s ( pati5ts ) ,alzheim]'s & relat$ dem5tias ,section #aaae;,a7b77#b77;,b7 ( ! ,social ,security ,act 7#db ,u4,s4,c4 #acae7;b77#b77;,b77 is am5d$ by add+ ! foll[+ new clause3 7xxv7 ,all[+ ,/ates to develop & te/ programs t increase an ,alzheim]'s disease pati5t's ability to rema9 9 ! community by r$uc+ ! f9ancial burd5 to family c>egiv]s1 & t include-- 7,i7 familial c>egiv] support s]vices1 includ+ tra9+ necess>y to enable su* c>egiv]s to provide s]vices at ! level ( a home heal? aide2 7,,ii7 c]tification ( familial c>egiv] tra9+ & satisfactory completion ( te/+ or o!r requirem5ts demon/rat+ c>egiv] compet5ce2 7,,iii7 appropriate familial c>egiv] ov]sight1 includ+ home visits or o!r activities2 & 7,,iv7 = familial c>egiv]s ( ,alzheim]'s disease & o!r dem5tia pati5ts = :om a c>e plan includes home heal? aide s]vices1 paym5t to ! c>egiv] = ! h\rs ( "o-on-"o s]vices provid$ 9 ! c>e plan1 & p]=m$ by ! familial c>egiv]s1 9 an am\nt t is n bel[ ! !n-applicable m9imum wage 9 t ,/ate & does n exce$ ! prevail+ h\rly rate paid to a home heal? aide4 4 #e4 ,m$ic>e quality paym5t program ,n lat] ?an ,janu>y #a1 #bjai1 ! ,secret>y ( ,heal? & ,human ,s]vices %all implem5t ,m$ic>e policies "u title ,,xviii ( ! ,social ,security ,act1 includ+ quality measures & ,m$ic>e ,advantage plan rat+ & risk adju/m5t me*anisms1 t reflect ! public heal? imp]ative (-- 7#a7 promot+ heal?y bra9 life/yle *oices2 7#b7 id5tify+ & respond+ to pati5t risk factors = ,alzheim]'s disease & relat$ dem5tias2 & 7#c7 inc5tiviz+ provid]s =-- 7,a7 adequate & reliable cognitive impairm5t detection 9 ! prim>y c>e sett+1 t is docum5t$ 9 ! pati5t's electronic heal? record & communicat$ to ! pati5t2 7,b7 timely ,alzheim]'s disease diagnosis2 & 7,c7 appropriate c>e plann+ s]vices1 includ+ id5tification (1 & communication ) pati5ts & c>egiv]s ab\t1 ! pot5tial = cl9ical trial p>ticipation4 #f4 ,report to ,congress on implem5tation ( ?is ,act ,n lat] ?an #c ye>s aft] ! date ( ! enactm5t ( ?is ,act1 ! ,secret>y ( ,heal? & ,human ,s]vices %all submit a report to ,congress on ! implem5tation ( ! provisions (1 & am5dm5ts made by1 ?is ,act1 includ+-- 7#a7 ! increas$ use ( validat$ tools = detection ( cognitive impairm5t & ,alzheim]'s disease2 7#b7 models und]go+ te/+ & evaluation "u ! provisions (1 & am5dm5ts made by1 sections #c & #d2 7#c7 utilization ( ,alzheim]'s disease diagno/ic & c>e plann+ s]vices2 & 7#d7 outrea* ef=ts 9 ! prim>y c>e & pati5t communities4 #g4 ,/udy & report on regulatory & legislative *anges or ref9em5ts t w\ld accel]ate ,alzheim]'s disease rese>* progress 7a7 ,9 g5]al ,! ,comptroll] ,g5]al ( ! ,unit$ ,/ates 79 ?is section ref]r$ to z ! ,comptroll] ,g5]al7 %all conduct a /udy on regulatory & legislative *anges or ref9em5ts t w\ld accel]ate ,alzheim]'s disease rese>* progress4 ,9 conduct+ su* /udy1 ! ,comptroll] ,g5]al %all consult ) int]e/$ /akehold]s1 includ+ indu/ry lead]s1 rese>*]s1 cl9ical exp]ts1 pati5t advocacy gr\ps1 c>egiv]s1 pati5ts1 provid]s1 & ,/ate lead]s4 ,su* /udy %all include an analysis (-- 7#a7 innovative public-private p>tn]%ips1 innovative f9anc+ tools1 inc5tives & o!r me*anisms to enhance ! quality ( c>e = individuals diagnos$ ) ,alzheim]'s disease1 r$uce ! emotional1 f9ancial1 & physical burd5 on familial c>e p>tn]s1 & accel]ate developm5t ( prev5tative1 curative1 & disease-modify+ !rapies2 & 7#b7 ! results ( any models "u ! provisions (1 & am5dm5ts made by1 sections #c & #d & ! feasibility ( incorporat+ into su* models innovative arrangem5ts ) rese>* sponsors1 ?r\gh a us] fee or o!rwise1 to facilitate budget neutrality or inc5tivize provid]s ?r\gh a %>$-sav+s approa*4 7b7 ,report ,n lat] ?an #a ye> aft] ! date ( ! enactm5t ( ?is ,act1 ! ,comptroll] ,g5]al %all submit to ,congress a report conta9+ ! results ( ! /udy conduct$ "u subsection 7a71 toge!r ) recomm5dations = su* legislation & adm9i/rative action z ! ,comptroll] ,g5]al det]m9es appropriate4