,,iv #aag? ,,congress #b;d ,session ,h4 ,,res4 #aagf ,,9 ,,! ,,h\se ,,( ,,repres5tatives ,june #ae1 #bjbb,mr4 ,danny ,k4 ,davis ( ,ill9ois 7= himself1 ,mr4 ,burgess1 ,ms4 ,lee ( ,cali=nia1 ,ms4 ,sewell1 ,mr4 ,butt]field1 ,mr4 ,ow5s1 & ,mr4 ,bilirakis7 submitt$ ! foll[+ resolution2 :i* 0 ref]r$ to ! ,committee on ,en]gy & ,comm]ce ,,resolution ,express+ support = ! designation ( ,june #ai1 #bjbb1 z ,_w ,sickle ,cell ,aw>5ess ,day 9 ord] to increase public al]tness across ! ,unit$ ,/ates & global community ab\t sickle cell disease1 ! cont9u$ ne$ = empirical rese>*1 e>ly detection scre5+s = sickle cell trait c>ri]s1 novel effective treatm5ts lead+ to a cure1 & prev5tative c>e programs ) respect to complications f sickle cell anemia & conditions relat$ to sickle cell disease4 ,:]eas sickle cell disease 7ref]r$ to 9 ?is preamble z ,,scd7 is def9$ z a gr\p ( inh]it$ r$ blood cell disord]s t is a g5etic condition pres5t at bir? & is a major heal? problem 9 ! ,unit$ ,/ates & worldwide2 ,:]eas ! #bjbb !me ( ,_w ,sickle ,cell ,aw>5ess ,day1 ,%9e ! ,light on ,sickle ,cell is an imm$iate call to action to improve ! heal? & quality ( life = individuals liv+ ) ,,scd & _! families2 ,:]eas1 9 #aigb1 ,dr4 ,*>les ,:itt5 e/abli%$ ! ,sickle ,cell ,disease ,association ( ,am]ica to improve rese>*1 education1 & heal? c>e = sickle cell pati5ts1 :i* is n[ headqu>t]$ 9 ,hanov]1 ,m>yl&2 ,:]eas1 9 #aigb1 ,congress pass$ ! ,national ,sickle ,cell ,disease ,control ,act :i*1 = ! fir/ "t1 provid$ au?ority to e/abli% education1 in=mation1 scre5+1 te/+1 c\nsel+1 rese>*1 & treatm5t programs = sickle cell disease2 ,:]eas ,,scd is a g5e mutation t causes a s+le misspell+ 9 ! ,,dna in/ructions = hemoglob91 a prote9 t aids 9 c>ry+ oxyg5 9 ! blood1 results 9 *ronic complications relat$ to anemia1 /roke1 infections1 organ failure1 tissue damage1 int5se p]iods ( pa9 ref]r$ to z vaso-occulsive crises1 & ev5 premature dea? 9 p]sons liv+ ) ! disease2 ,:]eas sickle cell trait 7,,sct7 occurs :5 a p]son inh]its "o copy ( ! sickle cell g5e f "o ( 8 or h] p>5ts1 & 9 ! ,unit$ ,/ates an e/imat$ #c1jjj1jjj individuals h ,,sct ) _m unaw>e ( _! /atus2 if bo? p>5ts h ,,sct1 !re is a #be-p]c5t 7or #a 9 #d7 *ance t any *ild ( !irs w h ,,scd2 ,:]eas ! preval5ce ( ,,scd 9 ! ,unit$ ,/ates affects approximately #ajj1jjj individuals1 #a 9 e #cfe ,african-,am]ican bir?s1 & #a 9 e #af1cjj ,hispanic-,am]ican bir?s1 ) r\ghly #a 9 #ac ,african-,am]ican babies born ) sickle cell trait2 ,:]eas ! global impr9t ( ,,scd affects millions ( p ?r\gh\t ! _w2 p>ticul>ly among ^? p]sons ^: ance/ors came f sub-,sah>an ,africa2 ,spani%-speak+ regions 9 ! ,we/]n ,hemisph]e 7,s\? ,am]ica1 ! ,c>ibbean1 & ,c5tral ,am]ica72 ,saudi ,arabia2 ,india2 & ,m$it]ranean c\ntries su* z ,turkey1 ,greece1 & ,italy2 ,:]eas ! v>iance relat$ to disease preval5ce ( sickle cell trait ranges greatly by region1 & !re are levels record$ z high z #dj p]c5t 9 c]ta9 areas ( sub-,sah>an ,africa1 ea/]n ,saudi ,arabia1 & c5tral ,india2 ,:]eas 9 c\ntries t are poor 9 res\rces1 m ?an #ij p]c5t ( *ildr5 ) ,,scd d n live to see adul?ood2 ,:]eas approximately #a1jjj *ildr5 9 ,africa are born ) ,,scd daily ) m ?an half :o w die be=e _! fif? bir?day2 ,:]eas !re is a high preval5ce ( ,,scd 9 ,india1 mo/ notably )9 ! c5tral & we/]n regions t results 9 ne>ly #bj p]c5t ( babies diagnos$ ) ,,scd dy+ by ! age ( two2 ,:]eas1 #af ye>s ago1 9 #bjjf1 ! ,_w ,heal? ,assembly pass$ a resolution recogniz+ ,,scd z a public heal? priority ) a call to action t ea* c\ntry implem5t measures to tackle ! disease1 & ?ree ye>s lat]1 ! ,unit$ ,nations adopt$ ?is same resolution 9 #bjji2 ,:]eas newborn scre5+ = ,,scd is a crucial fir/ /ep = families to obta9 a timely diagnosis & ! e/abli%m5t ( compreh5sive c>e1 :i* 9 turn helps to decrease mortality & morbidity = high] survival rates 9 *ildr52 ,:]eas approv$ treatm5ts = ,,scd rema9 few 9 numb] ) only f\r ,food & ,drug ,adm9i/ration-approv$ !rapies s9ce #bjag1 & !re is a robu/ ,,scd pipel9e ) ov] #dj !rapies 9 developm5t2 ,:]eas consid]+ ! impact ( ?is molecul> disease t results 9 ! suff]+ ( pati5ts z well z _! families liv+ ) ,,scd1 !re is an imm$iate ne$ = life-sav+ !rapeutics t c improve ! duration & quality ( pati5ts lives2 ,:]eas1 9 #bjbj1 ! ,national ,academies ( ,sci5ce1 ,eng9e]+1 & ,m$ic9e 7,,nasem7 develop$ a compreh5sive ,/rategic ,plan & ,bluepr9t = ,action to ,address ,sickle ,cell ,disease1 :i* cit$ ! ne$ = new innovative !rapies z well z to address b>ri]s t may impact deliv]y & access to approv$ treatm5ts2 ,:]eas1 9 #bjbj1 ! ,dep>tm5t ( ,heal? & ,human ,s]vices1 9 p>tn]%ip ) ! ,am]ican ,society ( ,hematology & ,sickle,in,africa1 9 collaboration ) ! ,_w ,heal? ,organization1 ho/$ a web9> = a jo9t ef=t to /r5g!n ,,scd ef=ts dur+ ! coronavirus disease 7,,covid-#ai7 p&emic & beyond2 ,:]eas ,am]ican ,society ( ,hematology memb] & rec5tly deceas$ ,kwaku ,oh5e-,frempong1 ,m4,d41 ,pr(essor ,em]itus ( ,p$iatrics at ! ,p]elman ,s*ool ( ,m$ic9e at ! ,univ]sity ( ,p5nsylvania1 :o s]v$ on ! ,global ,coalition on ,,scd1 has be5 a lead] 9 advanc+ ! body ( k 9 ,,scd rese>*1 public heal?1 & m$ic9e1 & is recogniz$ z immeasurably b5efitt+ ?\s&s ( *ildr5 worldwide2 ,:]eas !re are em]g+ g5etic !rapy te*nologies1 includ+ g5e edit+1 t c modify a pati5t's own hematopoietic /em cells ) ! goal ( ! pati5t be+ able to g5]ate heal?y r$ blood cells to prev5t sickle cell crises2 ,:]eas :ile hematopoietic /em cell transplantation 7commonly kn[n z ,,hsct7 is curr5tly ! only cure = ,,scd1 & :ile advances 9 treat+ ! associat$ complications ( ,,scd h occurr$1 m rese>* is ne$$ to f9d widely available treatm5ts & cures to help individuals ) ,,scd2 & ,:]eas ,june #ai1 #bjbb1 has be5 designat$ ,_w ,sickle ,cell ,aw>5ess ,day to increase public al]tness across ! ,unit$ ,/ates & global community ab\t sickle cell disease1 ! cont9u$ ne$ = empirical rese>*1 e>ly detection scre5+s = sickle cell disease trait c>ri]s1 novel effective treatm5ts lead+ to a cure1 & prev5tative-c>e programs ) respect to complications f sickle cell anemia & conditions relat$ to sickle cell disease3 ,n[1 !re=e1 be x ,t ! ,h\se ( ,repres5tatives-- 7#a7 supports ! goals & ideals ( ,_w ,sickle ,cell ,aw>5ess ,day2 7#b7 commits to ensur+ equitable access by %9+ ! light among economic1 racial1 & e?nic gr\ps to new treatm5ts 9 ord] to improve heal? outcomes = ^? liv+ ) sickle cell disease2 7#c7 calls on ! ,dep>tm5t ( ,heal? & ,human ,s]vices to create global policy solutions aim$ at provid+ support = ! global community & at-home res\rces ne$$ to provide access to newborn scre5+ programs1 !rapeutic int]v5tions1 & support s]vices 9 p>tn]%ip ) local gov]nm5ts ) ! ne$$ infra/ructure = rese>* & treatm5t2 7#d7 supports elim9at+ b>ri]s to equitable access = innovative sickle cell disease !rapies1 includ+ cell1 g5e1 & g5e-edit+ !rapies 9 ! ,m$ic>e & ,m$icaid sy/ems = pati5ts :o ne$ !m mo/2 7#e7 enc\rages ! p ( ! ,unit$ ,/ates & globally to hold appropriate programs1 ev5ts1 & activities on ,sickle ,cell ,aw>5ess ,day to raise public aw>5ess ( _! sickle cell disease trait1 prev5tative-c>e programs1 treatm5ts1 & o!r pati5t s]vices = ^? suff]+ f sickle cell disease1 complications f sickle cell disease1 & conditions relat$ to sickle cell disease2 & 7#f7 enc\rages ! ,presid5t ( ! ,unit$ ,/ates to =m a ,sickle ,cell ,disease ,int]ag5cy ,cab9et1 :i* w\ld be conv5$ by ! ,:ite ,h\se1 br++ toge!r dep>tm5ts & ,f$]al ag5cies across ,gov]nm5t to address sickle cell disease on multiple fronts1 :i* w\ld include1 b are n limit$ to1 ! ,dep>tm5t ( ,heal? & ,human ,s]vices1 ,dep>tm5t ( ,vet]ans ,affairs1 ,national ,in/itutes ( ,heal?1 ,food & ,drug ,adm9i/ration1 & ,c5t]s = ,m$ic>e ,m$icaid ,s]vices to beg9 work+ t[>d policies t w support equitable & appropriate access to innovative ,,scd !rapies1 & 9 ?is reg>d1 ! ,h\se ( ,repres5tatives urges t ! options to be consid]$ n only address access to pot5tial future curative treatm5ts1 b also address ! bias t ?is population cont9ues to face )9 bo? ! ,unit$ ,/ates & global heal? c>e sy/ems4