,,ii ,calendar ,no4 #dgh #aacth ,,congress #b;d ,session ,s4 #cae ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,february #ac1 #bjac,ms4 ,klobuchar 7for herself1 ,mr4 ,wicker1 ,mr4 ,sanders1 ,ms4 ,collins1 ,mr4 ,menendez1 ,mr4 ,isakson1 ,ms4 ,mikulski1 ,mr4 ,leahy1 ,mr4 ,lautenberg1 ,mr4 ,nelson1 ,mr4 ,schumer1 ,mr4 ,cochran1 ,mrs4 ,boxer1 ,mr4 ,king1 ,mr4 ,bennet1 ,ms4 ,stabenow1 ,mr4 ,blunt1 ,mrs4 ,shaheen1 ,mr4 ,markey1 ,mrs4 ,gillibrand1 ,mr4 ,brown1 ,mr4 ,tester1 ,mr4 ,graham1 ,mr4 ,coons1 ,ms4 ,warren1 ,ms4 ,cantwell1 ,mr4 ,pryor1 ,mr4 ,booker1 ,mr4 ,franken1 and ,mr4 ,harkin7 introduced the following bill2 which was read twice and referred to the ,committee on ,health1 ,education1 ,labor1 and ,pensions ,july #bc1 #bjad,reported by ,mr4 ,harkin1 with an amendment and an amendment to the title,strike out all after the enacting clause and insert the part printed in italic ,a ,,bill ,to reauthorize and extend the ,paul ,d4 ,wellstone ,muscular ,dystrophy ,community ,assistance1 ,research1 and ,education ,amendments of #bjjh4 #a4 ,short title ,this ,act may be cited as the ,paul ,d4 ,wellstone ,muscular ,dystrophy ,community ,assistance1 ,research and ,education 7,,md-,,care7 ,amendments of #bjac4 #b4 ,initiative through the ,director of the ,national ,institutes of ,health ,section #djd;,e of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bhc;g7 is amended-- 7#a7 in subsection 7a77#a7-- 7,a7 by striking ,muscoskeletal and inserting ,musculoskeletal2 and 7,b7 by inserting ,becker1 myotonic1 facioscapulohumeral muscular dystrophy 7referred to in this section as ,,fshd71 ,congenital muscular dystrophy1 ,limb-girdle muscular dystrophy1 after ,duchenne12 7#b7 in subsection 7b7-- 7,a7 in paragraph 7#b71 by inserting cardiac and pulmonary function1 after imaging1 genetics12 and 7,b7 in paragraph 7#c71 by inserting and sharing of data after regular communication2 7#c7 in subsection 7d7-- 7,a7 in paragraph 7#b7-- 7i7 in the matter preceding subparagraph 7,a71 by striking #ae and inserting #ah2 and 7ii7 in subparagraph 7,a71 by striking children with muscular dystrophy1 such as the ,department of ,education and inserting children and adults with muscular dystrophy1 such as the ,department of ,education1 the ,social ,security ,administration1 the ,united ,states ,administration for ,community ,living2 and 7,b7 in paragraph 7#d77;,b71 by inserting 1 and shall meet no less than two times per calendar year before the period2 7#d7 in subsection 7e7-- 7,a7 in paragraph 7#a7-- 7i7 in the matter preceding subparagraph 7,a71 by striking through the national research institutes and inserting through the represented ,federal agencies2 and 7ii7 in subparagraph 7,a71 by striking and rehabilitative issues1 including studies of the impact of such diseases in rural and underserved communities and inserting public resources1 and rehabilitative issues1 including studies of the impact of such diseases in rural and underserved communities1 health economic studies to demonstrate the cost-effectiveness of providing independent living resources and support to patients with various forms of muscular dystrophy1 and studies to determine optimal clinical care interventions for adults with various forms of muscular dystrophy2 and 7,b7 in paragraph 7#b71 by adding at the end the following3 7,f7 ,the development of clinical interventions to improve the health of adults with various forms of muscular dystrophy4 2 and 7#e7 in subsection 7g71 by striking for the various forms of muscular dystrophy by prioritizing the achievement of the goals related to this topic in the plan under subsection 7e77#a7 and inserting and shall1 not later than #f months after the date of enactment of the ,paul ,d4 ,wellstone ,muscular ,dystrophy ,community ,assistance1 ,research and ,education 7,,md-,,care7 ,amendments of #bjac1 in coordination with appropriate ,federal agencies1 including relevant offices within the ,food and ,drug ,administration and supported by the ,national ,institutes of ,health and ,department of ,defense1 develop a plan to expedite the evaluation and approval of emerging therapies and personalized medicines that have the potential to decrease fatal disease progression across the various forms of muscular dystrophy4 #c4 ,surveillance and research regarding muscular dystrophy ,section #cag,q of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bdg;b-#ah7 is amended-- 7#a7 in the second sentence of subsection 7b71 by inserting before the period the following3 and ensure that the program captures data from different racial and ethnic populations1 and that such data are made publicly available to investigators conducting public or private research on muscular dystrophy2 and 7#b7 in subsection 7c71 by adding at the end the following3 ,the ,secretary shall also foster ongoing engagement and collaboration between the surveillance program and centers of excellence44 #d4 ,information and education ,section #e7;c7 of the ,muscular ,dystrophy ,community ,assistance1 ,research and ,education ,amendments of #bjja 7#db ,u4,s4,c4 #bdg;b-#ai7;c77 is amended by adding at the end the following3 7#d7 ,update and widely disseminate existing ,duchenne-,becker muscular dystrophy care considerations for pediatric patients1 develop and widely disseminate ,duchenne-,becker muscular dystrophy care considerations for adult patients1 and develop and widely disseminate acute care considerations for all muscular dystrophy populations4 ,the care considerations should build upon existing efforts currently underway for congenital muscular dystrophy1 fascioscapulohumeral muscular dystrophy1 limb-girdle muscular dystrophy1 and myotonic muscular dystrophy1 and incorporate strategies specifically responding to the findings of the national transitions survey of minority1 young adult and adult communities of muscular dystrophy patients4 4 #a4 ,short title ,this ,act may be cited as the ,paul ,d4 ,wellstone ,muscular ,dystrophy ,community ,assistance1 ,research and ,education ,amendments of #bjad4 #b4 ,initiative through the ,director of the ,national ,institutes of ,health ,section #djd;,e of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bhc;g7 is amended-- 7#a7 in subsection 7a77#a7-- 7,a7 by striking ,muscoskeletal and inserting ,musculoskeletal2 and 7,b7 by inserting ,becker1 congenital muscular dystrophy1 limb-girdle muscular dystrophy1 after ,duchenne12 7#b7 in subsection 7b7-- 7,a7 in paragraph 7#b7-- 7i7 by striking genetics1 at the second place it appears2 and 7ii7 by inserting cardiac and pulmonary function1 and after imaging12 and 7,b7 in paragraph 7#c71 by inserting and sharing of data after regular communication2 7#c7 in subsection 7d7-- 7,a7 in paragraph 7#b7-- 7i7 in the matter preceding subparagraph 7,a71 by striking #ae and inserting #ah2 and 7ii7 in subparagraph 7,a7-- 7,i7 by striking and the ,food and ,drug ,administration and inserting 1 the ,food and ,drug ,administration1 and the ,administration for ,community ,living2 7,,ii7 by inserting and adults after children2 and 7,,iii7 by striking such as the ,department of ,education and inserting including the ,department of ,education and the ,social ,security ,administration2 and 7,b7 in paragraph 7#d77;,b71 by inserting 1 but shall meet no fewer than two times per calendar year before the period2 and 7#d7 in subsection 7e7-- 7,a7 in paragraph 7#a7-- 7i7 in the matter preceding subparagraph 7,a71 by striking through the national research institutes and inserting through the agencies represented on the ,coordinating ,committee pursuant to subsection 7d77#b77;,a72 and 7ii7 in subparagraph 7,a7-- 7,i7 by inserting public services1 before and rehabilitative issues2 and 7,,ii7 by inserting 1 studies to demonstrate the cost-effectiveness of providing independent living resources and support to patients with various forms of muscular dystrophy1 and studies to determine optimal clinical care interventions for adults with various forms of muscular dystrophy after including studies of the impact of such diseases in rural and underserved communities2 and 7,b7 in paragraph 7#b77;,d71 by inserting after including new biological agents the following3 and new clinical interventions to improve the health of those with muscular dystrophy4 #c4 ,surveillance and research regarding muscular dystrophy ,the second sentence of section #cag,q7b7 of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bdg;b-#ah7;b77 is amended by inserting before the period the following3 and1 to the extent possible1 ensure that data be representative of all affected populations and shared in a timely manner4 #d4 ,information and education ,section #e7;c7 of the ,muscular ,dystrophy ,community ,assistance1 ,research and ,education ,amendments of #bjja 7#db ,u4,s4,c4 #bdg;b-#ai7;c77 is amended-- 7#a7 in paragraph 7#b7-- 7,a7 by inserting for pediatric and adult patients1 including acute care considerations1 after issuance of care considerations2 7,b7 by inserting various before other forms of muscular dystrophy2 and 7,c7 by striking and at the end2 7#b7 by redesignating paragraph 7#c7 as paragraph 7#d72 7#c7 by inserting after paragraph 7#b7 the following3 7#c7 in developing and updating care considerations under paragraph 7#b71 incorporate strategies specifically responding to the findings of the national transitions survey of minority1 young adult1 and adult communities of muscular dystrophy patients2 and 2 and 7#d7 in paragraph 7#d71 as redesignated1 by inserting various before other forms of muscular dystrophy4 ,amend the title so as to read3 ,a bill to amend the ,public ,health ,service ,act relating to ,federal research on muscular dystrophy1 and for other purposes44 ,july #bc1 #bjad,reported with an amendment and an amendment to the title