,,ii #aahth ,,congress #ast ,session ,s4 #ajfd ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,march #bi1 #bjbc,mrs4 ,capito 7for herself1 ,mr4 ,murphy1 ,mr4 ,marshall1 ,ms4 ,smith1 ,mr4 ,scott of ,florida1 and ,mrs4 ,gillibrand7 introduced the following bill2 which was read twice and referred to the ,committee on ,health1 ,education1 ,labor1 and ,pensions ,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 ,national ,plan to ,end ,parkinson's ,act4 #b4 ,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 other neurodegenerative ,parkinsonisms1 including1 but not limited to1 multiple system atrophy1 ,lewy body disease1 corticobasal degeneration1 progressive supranuclear palsy1 and ,parkinson's-related dementia4 7b7 ,establishment ,the ,secretary of ,health and ,human ,services 7in this section referred to as the ,secretary7 shall carry out a national project to prevent and cure ,parkinson's1 ameliorate its symptoms1 and slow or stop its progression1 to be known as the ,national ,parkinson's ,project 7referred to in this section as the ,project74 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 prevent and cure ,parkinson's1 ameliorate its symptoms1 and slow or stop its progression2 7#b7 carry out the annual assessment under subsection 7d72 7#c7 provide information 7including an estimate of the level of ,federal investment necessary to prevent and cure ,parkinson's1 ameliorate its symptoms1 and slow or stop its progression71 and coordination of ,parkinson's research and services1 across all ,federal agencies2 7#d7 encourage the development of safe and effective treatments1 strategies1 and other approaches to prevent1 halt1 or slow the course of ,parkinson's or to enhance functioning and improve quality of life2 7#e7 promote the-- 7,a7 early diagnosis of ,parkinson's2 and 7,b7 coordination of the care and treatment of individuals with ,parkinson's2 7#f7 review the impact of ,parkinson's on the physical1 mental1 and social health of those living with ,parkinson's and their care partners2 7#g7 coordinate with international bodies1 to the degree possible1 to integrate and inform the global mission to prevent and cure ,parkinson's1 ameliorate its symptoms1 and slow or stop its progression2 and 7#h7 carry out other such activities as the ,secretary deems appropriate4 7d7 ,annual assessment ,not later than #bd months after the date of enactment of this ,act1 and annually thereafter1 the ,secretary shall carry out an assessment of the ,nation's progress in preparing for and responding to the escalating burden of ,parkinson's1 including-- 7#a7 the formulation of recommendations for priority actions based on the assessment2 7#b7 a description of the steps that have been or should be taken to implement the recommendations2 and 7#c7 such other items as the ,secretary deems 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 ,council74 7#b7 ,membership 7,a7 ,federal members ,the ,advisory ,council shall be comprised of diverse and inclusive representatives from-- 7i7 the ,centers for ,disease ,control and ,prevention2 7ii7 the ,administration on ,community ,living2 7iii7 the ,centers for ,medicare ,medicaid ,services2 7iv7 the ,office of the ,director of the ,national ,institutes of ,health2 7v7 the ,national ,institute of ,neurological ,disorders and ,stroke2 7vi7 the ,national ,institute of ,environmental ,health ,sciences2 7vii7 the ,department of ,veterans ,affairs2 7viii7 the ,food and ,drug ,administration2 7ix7 the ,department of ,defense2 7x7 the ,environmental ,protection ,agency2 7xi7 the ,office of ,minority ,health2 7xii7 the ,indian ,health ,service2 and 7xiii7 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 members from outside the ,federal ,government1 to be appointed by the ,secretary1 which members 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 research or ,parkinson's patient care and other services4 7#c7 ,meetings 7,a7 ,quarterly meetings ,the ,advisory ,council shall meet at least once each quarter4 7,b7 ,biannual research meeting ,not later than #bd months after the date of enactment of this ,act1 and every #b years 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 of the ,advisory ,council shall be open to the public4 7#d7 ,advice ,the ,advisory ,council shall advise the ,secretary on ,parkinson's-related issues4 7#e7 ,biannual report ,not later than #ah months after the date of enactment of this ,act1 and every #b years thereafter1 the ,advisory ,council shall provide to the ,secretary and ,congress a report containing-- 7,a7 an evaluation of all federally funded efforts in ,parkinson's research1 prevention1 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 or condense ,federal programs based on each program's performance1 mission1 and purpose2 7,c7 recommendations to-- 7i7 reduce the financial impact of ,parkinson's on-- 7,i7 the ,medicare program and other federally funded programs2 and 7,,ii7 families living with ,parkinson's2 7ii7 improve health outcomes and quality of life2 7iii7 prevent ,parkinson's2 and 7iv7 research the association between environmental triggers and ,parkinson's to help reduce exposure to potential triggers2 and 7,d7 an evaluation of the implementation1 including outcomes1 of the national plan under subsection 7c77#a74 7#f7 ,termination ,the ,advisory ,council shall terminate at the end of calendar year #bjce4 7f7 ,data sharing ,agencies both within the ,department of ,health and ,human ,services and outside of the ,department that have data relating to ,parkinson's shall share such data with the ,secretary of ,health and ,human ,services1 or the ,secretary's designee1 consistent with the statutory obligations regrading disclosure of information for that department or agency1 to enable the ,secretary1 or the ,secretary's designee1 to complete the report described in subsection 7g74 7g7 ,biannual report ,the ,secretary shall submit to the ,congress-- 7#a7 a ,biannual report that includes an evaluation 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 an evaluation of all such programs based on performance1 mission1 and purpose2 7#c7 recommendations for-- 7,a7 priority actions based on the evaluation conducted by the ,secretary and the ,advisory ,council to-- 7i7 reduce the financial impact of ,parkinson's on-- 7,i7 the ,medicare program and other federally funded programs2 and 7,,ii7 families living with ,parkinson's disease2 7ii7 improve health outcomes and quality of life2 7iii7 prevent ,parkinson's2 and 7iv7 research the association between environmental triggers and ,parkinson's to help reduce exposure to potential triggers2 7,b7 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 and 7,c7 implementation steps to address priority actions described in subparagraphs 7,a7 and 7,b72 and 7#d7 an up-to-date version of the national plan under subsection 7c77#a74 7h7 ,sunset ,the section shall cease to be effective at the end of calendar year #bjce4