,,ib ,union ,calendar ,no4 #bec #aahth ,,congress #ast ,session ,h4 ,r4 #bcfe ,report ,no4 #aah-cac ,,in ,,the ,,house ,,of ,,representatives ,march #bi1 #bjbc,mr4 ,bilirakis 7for himself1 ,mr4 ,tonko1 ,mrs4 ,harshbarger1 ,ms4 ,schakowsky1 ,mr4 ,fitzpatrick1 ,ms4 ,kuster1 ,mrs4 ,kim of ,california1 ,ms4 ,barragn1 ,mr4 ,valadao1 and ,mr4 ,higgins of ,new ,york7 introduced the following bill2 which was referred to the ,committee on ,energy and ,commerce ,december #ab1 #bjbc;,additional sponsors3 ,ms4 ,bonamici1 ,mrs4 ,trahan1 ,mr4 ,quigley1 ,mr4 ,carbajal1 ,mrs4 ,bice1 ,ms4 ,matsui1 ,mr4 ,norcross1 ,ms4 ,lois ,frankel of ,florida1 ,ms4 ,chu1 ,mr4 ,grijalva1 ,ms4 ,dean of ,pennsylvania1 ,mr4 ,scott ,franklin of ,florida1 ,mr4 ,smith of ,washington1 ,mr4 ,gomez1 ,mr4 ,swalwell1 ,mr4 ,pappas1 ,ms4 ,wexton1 ,mr4 ,bacon1 ,mr4 ,nadler1 ,mrs4 ,napolitano1 ,mr4 ,kim of ,new ,jersey1 ,ms4 ,sewell1 ,mrs4 ,dingell1 ,mr4 ,evans1 ,mr4 ,garca of ,illinois1 ,mr4 ,connolly1 ,ms4 ,norton1 ,mr4 ,morelle1 ,mrs4 ,cherfilus-,mc,cormick1 ,mr4 ,correa1 ,mr4 ,kilmer1 ,ms4 ,del,bene1 ,mr4 ,schneider1 ,ms4 ,porter1 ,mr4 ,smucker1 ,mr4 ,mc,govern1 ,ms4 ,mace1 ,mr4 ,mooney1 ,mr4 ,davis of ,north ,carolina1 ,mr4 ,rutherford1 ,mr4 ,crdenas1 ,ms4 ,titus1 ,mr4 ,mullin1 ,mr4 ,carey1 ,mr4 ,johnson of ,georgia1 ,ms4 ,blunt ,rochester1 ,mr4 ,van ,drew1 ,mr4 ,fleischmann1 ,ms4 ,malliotakis1 ,mrs4 ,peltola1 ,ms4 ,wild1 ,mr4 ,burchett1 ,mr4 ,graves of ,louisiana1 ,mr4 ,luetkemeyer1 ,mr4 ,la,hood1 ,mr4 ,raskin1 ,mr4 ,panetta1 ,mr4 ,lynch1 ,mr4 ,edwards1 ,mr4 ,himes1 ,ms4 ,clarke of ,new ,york1 ,mr4 ,wilson of ,south ,carolina1 ,mr4 ,dunn of ,florida1 ,mrs4 ,houchin1 ,ms4 ,craig1 ,mr4 ,lieu1 ,mr4 ,peters1 ,mrs4 ,miller of ,west ,virginia1 ,mr4 ,timmons1 ,mr4 ,neguse1 ,mr4 ,crenshaw1 ,mrs4 ,fletcher1 ,mr4 ,allred1 ,mr4 ,frost1 ,mr4 ,pascrell1 ,ms4 ,sherrill1 ,ms4 ,meng1 ,ms4 ,lee of ,nevada1 ,mrs4 ,sykes1 ,mr4 ,costa1 ,mr4 ,turner1 ,mr4 ,mc,garvey1 ,mr4 ,austin ,scott of ,georgia1 ,ms4 ,hoyle of ,oregon1 ,mr4 ,landsman1 ,ms4 ,tlaib1 ,mr4 ,stanton1 ,mr4 ,gottheimer1 ,mr4 ,sherman1 ,mr4 ,walberg1 ,mr4 ,ezell1 ,mr4 ,blumenauer1 ,ms4 ,lee of ,california1 ,mr4 ,kildee1 ,ms4 ,scanlon1 ,mr4 ,levin1 ,mr4 ,balderson1 ,ms4 ,caraveo1 ,ms4 ,salinas1 ,mr4 ,larsen of ,washington1 ,mr4 ,magaziner1 ,mr4 ,trone1 ,mr4 ,cleaver1 ,ms4 ,brownley1 ,ms4 ,leger ,fernandez1 ,mr4 ,veasey1 ,mr4 ,garamendi1 ,mr4 ,thompson of ,pennsylvania1 ,mr4 ,jackson of ,north ,carolina1 ,mr4 ,la,turner1 ,ms4 ,houlahan1 ,mr4 ,huizenga1 ,mr4 ,carl1 ,mr4 ,menendez1 ,mr4 ,mann1 ,mr4 ,moolenaar1 ,ms4 ,pettersen1 ,ms4 ,mc,clellan1 ,ms4 ,perez1 ,mr4 ,crow1 ,ms4 ,davids of ,kansas1 ,ms4 ,strickland1 ,ms4 ,stevens1 ,ms4 ,adams1 ,mr4 ,takano1 ,ms4 ,lofgren1 ,ms4 ,slotkin1 ,mr4 ,bean of ,florida1 ,mr4 ,ciscomani1 ,mr4 ,castro of ,texas1 ,ms4 ,manning1 ,mr4 ,finstad1 ,mrs4 ,spartz1 ,ms4 ,hageman1 ,mr4 ,kelly of ,pennsylvania1 ,mr4 ,lawler1 ,mr4 ,garbarino1 ,mr4 ,pence1 ,mr4 ,la,malfa1 ,mr4 ,kustoff1 ,mr4 ,meeks1 ,ms4 ,moore of ,wisconsin1 ,mr4 ,scott of ,virginia1 ,mr4 ,krishnamoorthi1 ,mr4 ,bowman1 ,ms4 ,omar1 ,ms4 ,de ,la ,cruz1 ,ms4 ,stansbury1 ,ms4 ,escobar1 ,ms4 ,crockett1 ,ms4 ,tokuda1 ,mr4 ,johnson of ,ohio1 ,mr4 ,casten1 ,ms4 ,salazar1 ,mrs4 ,steel1 ,mr4 ,mrvan1 ,mr4 ,langworthy1 ,mr4 ,kean of ,new ,jersey1 ,mr4 ,rouzer1 ,mr4 ,pocan1 ,mr4 ,mc,caul1 ,mrs4 ,cammack1 and ,mr4 ,ryan ,december #ab1 #bjbc,reported with amendments1 committed to the ,committee of the ,whole ,house on the ,state of the ,union1 and ordered to be printed,strike out all after the enacting clause and insert the part printed in italic,for text of introduced bill1 see copy of bill as introduced on ,march #bi1 #bjbc ,a ,,bill ,to direct the ,secretary of ,health and ,human ,services to carry out a national project to prevent and cure ,parkinson's1 to be known as the ,national ,parkinson's ,project1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,dr4 ,emmanuel ,bilirakis ,national ,plan to ,end ,parkinson's ,act4 #b4 ,national ,parkinson's ,project ,title ,,iii of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bda et seq47 is amended by adding at the end3 ,w ,parkinson's and ,related ,disorders #cii,,oo4 ,national ,parkinson's ,project 7a7 ,definition of ,parkinson's ,in this section1 the term ,parkinson's means-- 7#a7 ,parkinson's disease2 and 7#b7 all other neurodegenerative ,parkinsonisms1 including multiple system atrophy1 corticobasal degeneration1 progressive supranuclear palsy1 and ,parkinson's-related dementia4 7b7 ,establishment ,the ,secretary shall carry out a national project1 to be known as the ,national ,parkinson's ,project 7referred to in this section as the ,project71 to prevent1 diagnose1 treat1 and cure ,parkinson's4 7c7 ,activities carried out through ,project ,in carrying out the ,project1 the ,secretary shall-- 7#a7 create1 maintain1 and periodically update an integrated national plan to prevent1 diagnose1 treat1 and cure ,parkinson's1 ameliorate symptoms1 and slow or stop progression2 7#b7 carry out the annual assessment under subsection 7d72 7#c7 provide information1 including-- 7,a7 an estimate of the level of current ,federal investment in preventing1 diagnosing1 treating1 and curing ,parkinson's1 ameliorating symptoms1 and slowing or stopping progression2 and 7,b7 if applicable1 an estimate of the investment necessary to prevent1 diagnose1 treat1 and cure ,parkinson's1 ameliorate symptoms1 and slow or stop progression2 7#d7 coordinate research and services across all ,federal agencies related to ,parkinson's2 7#e7 encourage the development of safe and effective treatments1 strategies1 and other approaches to prevent1 diagnose1 treat1 and cure ,parkinson's1 ameliorate symptoms1 and slow or stop progression2 7#f7 improve the-- 7,a7 early diagnosis of ,parkinson's2 and 7,b7 coordination of the care and treatment of individuals with ,parkinson's2 7#g7 review the impact of ,parkinson's on the physical1 mental1 and social health of individuals living with ,parkinson's and their caregivers and families2 7#h7 coordinate with international bodies1 to the extent possible1 to integrate and inform the mission to prevent1 diagnose1 treat1 and cure ,parkinson's1 ameliorate symptoms1 and slow or stop progression globally2 and 7#i7 to the extent practicable1 collaborate with other entities to prevent duplication of existing research activities for related disorders4 7d7 ,annual assessment ,not later than #bd months after the date of enactment of this section1 and annually thereafter1 the ,secretary shall carry out an assessment of the ,nation's progress in preparing for1 and responding to1 the escalating burden of ,parkinson's1 including-- 7#a7 recommendations for priority actions based on the assessment2 7#b7 a description of any steps that are planned or have already been taken to implement such recommendations1 including whether such recommendations can be implemented under existing law2 and 7#c7 such other items as the ,secretary determines appropriate4 7e7 ,advisory ,council 7#a7 ,in general ,the ,secretary shall establish and maintain an ,advisory ,council on ,parkinson's ,research1 ,care1 and ,services 7referred to in this section as the ,advisory ,council7 to advise the ,secretary on ,parkinson's-related issues4 7#b7 ,membership 7,a7 ,federal members ,the ,advisory ,council shall be comprised of experts1 to be appointed by the ,secretary1 who collectively are from various backgrounds and perspectives1 including at least one member from each of-- 7i7 the ,centers for ,disease ,control and ,prevention2 7ii7 the ,administration on ,community ,living2 7iii7 the ,centers for ,medicare ,medicaid ,services2 7iv7 the ,national ,institutes of ,health2 7v7 the ,agency for ,healthcare ,research and ,quality2 7vi7 the ,department of ,veterans ,affairs2 7vii7 the ,food and ,drug ,administration2 7viii7 the ,national ,science ,foundation2 7ix7 the ,department of ,defense2 7x7 the ,environmental ,protection ,agency2 7xi7 the ,office of ,minority ,health2 7xii7 the ,indian ,health ,service2 7xiii7 the ,surgeon ,general of the ,public ,health ,service2 and 7xiv7 other relevant ,federal departments and agencies as determined by the ,secretary4 7,b7 ,non-,federal members ,in addition to the members listed in subparagraph 7,a71 the ,advisory ,council shall include #aj expert members1 to be appointed by the ,secretary1 who shall include representatives of minority communities1 communities disproportionately affected by ,parkinson's1 and communities underrepresented in ,parkinson's research1 who shall each be from outside the ,federal ,government1 and who shall include-- 7i7 #b ,parkinson's patient advocates1 at least #a of whom is living with young-onset ,parkinson's2 7ii7 #a ,parkinson's family caregiver2 7iii7 #a health care provider2 7iv7 #b biomedical researchers with ,parkinson's-related expertise in basic1 translational1 clinical1 or drug development science2 7v7 #a movement disorder specialist who treats ,parkinson's patients2 7vi7 #a dementia specialist who treats ,parkinson's patients2 and 7vii7 #b representatives from nonprofit organizations that have demonstrated experience in ,parkinson's-related research or ,parkinson's-related patient care and other services4 7,c7 ,representation ,the ,secretary shall ensure that the members of the ,advisory ,council are collectively representative of agencies1 professions1 individuals1 and entities concerned with1 or affected by1 activities under this section4 7#c7 ,meetings 7,a7 ,frequency ,the ,advisory ,council shall meet-- 7i7 at least once each quarter during the #b-year period beginning on the date on which the ,advisory ,council is established2 and 7ii7 at the ,secretary's discretion after such period4 7,b7 ,annual research meeting ,not later than #bd months after the date of enactment of this section1 and every year thereafter1 the ,advisory ,council shall convene a meeting of ,federal and non-,federal organizations to discuss ,parkinson's research4 7,c7 ,open meetings ,the meetings under subparagraphs 7,a7 and 7,b7 shall be open to the public4 7#d7 ,annual report ,not later than #ah months after the date of enactment of this section1 and every year thereafter1 the ,advisory ,council shall provide to the ,secretary and ,congress a report containing-- 7,a7 a list of all federally-funded efforts in ,parkinson's research1 prevention1 diagnosis1 treatment1 clinical care1 and institutional-1 home-1 and community-based programs and the outcomes of such efforts2 7,b7 recommendations for priority actions to expand1 eliminate1 coordinate1 refocus1 streamline1 or condense ,federal programs based on each program's performance1 mission1 scope1 and purpose2 7,c7 recommendations to-- 7i7 reduce the financial impact of ,parkinson's on families living with ,parkinson's2 7ii7 improve health outcomes for1 and the quality of life of1 individuals living with ,parkinson's2 7iii7 prevent ,parkinson's1 ameliorate symptoms1 and slow or stop progression2 7iv7 improve the quality of care provided to beneficiaries with ,parkinson's who receive coverage through a federally-funded health care program1 such as the ,medicare program under title ,,xviii of the ,social ,security ,act or the ,medicaid program under title ,,xix of such ,act2 7v7 research the association between environmental triggers and ,parkinson's to help reduce exposure to potential triggers2 and 7vi7 research and better understand the underlying factors contributing to ,parkinson's2 7,d7 priority actions to improve all federally-funded efforts in ,parkinson's research1 prevention1 diagnosis1 treatment1 clinical care1 and institutional-1 home-1 and community-based programs2 7,e7 an evaluation of the implementation1 including outcomes1 of the national plan under subsection 7c77#a72 and 7,f7 implementation steps to address the recommendations and priority actions under subparagraphs 7,b71 7,c71 and 7,d71 based in part on the evaluation under subparagraph 7,e74 7#e7 ,termination ,the ,advisory ,council shall terminate at the end of calendar year #bjce4 7f7 ,information sharing ,each ,federal department and agency that has information relating to ,parkinson's shall share such information with the ,secretary consistent with the statutory obligations of such department or agency regarding disclosure of information1 as necessary to enable the ,secretary to complete a report under subsection 7e77#d74 7g7 ,sunset ,the section shall cease to be effective at the end of calendar year #bjce4 4 ,amend the title so as to read3 ,a bill to direct the ,secretary of ,health and ,human ,services to carry out a national project to prevent1 diagnose1 treat1 and cure ,parkinson's1 to be known as the ,national ,parkinson's ,project1 and for other purposes44 ,december #ab1 #bjbc,reported with amendments1 committed to the ,committee of the ,whole ,house on the ,state of the ,union1 and ordered to be printed