,,ii #aahth ,,congress #ast ,session ,s4 #cbeh ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,november #h1 #bjbc,mr4 ,coons 7for himself and ,ms4 ,murkowski7 introduced the following bill2 which was read twice and referred to the ,committee on ,finance ,a ,,bill ,to amend title ,,xviii of the ,social ,security ,act to provide coverage of ,,als-related services under the ,medicare program for individuals diagnosed with amyotrophic lateral sclerosis1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,,als ,better ,care ,act4 #b4 ,findings ,congress makes the following findings3 7#a7 ,amyotrophic lateral sclerosis 7in this section1 referred to as ,,als7 is a progressive and debilitating neurodegenerative disease4 7#b7 ,key services1 that include 7but are not limited to7 providing specialized physician or nurse practitioner support1 occupational therapy support1 speech pathology support1 physical therapy1 dietary support1 respiratory support1 registered nurse support1 and coordination of the furnishing of durable medical equipment1 are crucial for managing the complex medical needs of ,,als patients4 7#c7 ,studies have shown ,,als clinics that provide these key services to ,,als patients extend these patients' lifespans and improve the quality of their lives4 7#d7 ,these key services are furnished by a range of healthcare professionals4 7#e7 ,facilities providing care to ,,als patients currently face inadequate ,medicare reimbursement for the key services they offer to these patients4 7#f7 ,insufficient reimbursement creates significant challenges for facilities specializing in ,,als care1 resulting in extended wait times for patients in need of crucial services and hampering the ability of these facilities to innovate and improve the quality of care provided to ,,als patients4 7#g7 ,improved reimbursement rates would encourage facilities to invest in research1 innovation1 and technology1 leading to enhanced treatment options for ,,als and improved patient outcomes4 7#h7 ,remote medical management options for individuals suffering from ,,als must be an essential part of access to care for such individuals1 especially those living in rural areas or care deserts4 7#i7 ,telehealth is one of the essential management options referred to in paragraph 7#h7 and can assist in delivering timely and comprehensive care1 as ,,als patients living in rural areas or care deserts often face challenges in accessing specialized ,,als care and could otherwise be required to travel long travel distances1 often with caregivers or family members4 7#aj7 ,telehealth is especially important in maintaining access to care for ,,als patients as the disease progresses and causes ,,als patients to have more limited mobility1 which may make it challenging to attend in-person appointments regularly4 7#aa7 ,low funding and difficulty in staffing for ,,als clinical trials delay the development and availability of potential treatments and therapies for individuals living with the disease4 7#ab7 ,inadequate funding for ,,als clinical trials also impedes the ability to attract and retain qualified researchers1 clinicians1 and support staff1 limiting the overall progress and success of these trials4 #c4 ,providing for coverage of ,,als-related services under the ,medicare program for individuals diagnosed with amyotrophic lateral sclerosis 7a7 ,in general ,part ,e of title ,,xviii of the ,social ,security ,act 7#db ,u4,s4,c4 #acie et4 seq47 is amended by inserting after section #ahha;,a the following new section3 #ahha;,b4 ,medicare coverage of ,,als-related services for individuals diagnosed with amyotrophic lateral sclerosis 7a7 ,in general ,in the case of a covered ,,als individual1 the ,secretary shall establish a supplemental facility-based payment system described in subsection 7d7 for ,,als-related services provided to such an individual4 7b7 ,covered ,,als individual ,for purposes of this section1 the term covered ,,als individual means an individual who is medically determined to have amyotrophic lateral sclerosis 7as described in section #bbf7;h774 7c7 ,,als-,related services ,for purposes of this section1 the term ,,als-related services means items and services that are furnished to a covered ,,als individual in an outpatient setting by a qualified provider 7or by others under arrangements with them made by the qualified provider7 for the care and treatment of such an individual with respect to the progression of amyotrophic lateral sclerosis4 7d7 ,payment system 7#a7 ,authority ,the ,secretary shall establish a payment system under which a single payment determined in accordance with the succeeding paragraphs is made to a qualified provider for ,,als-related services furnished to a covered ,,als individual during a visit beginning on or after ,january #a1 #bjbe1 for the purpose of reimbursing the qualified provider for furnishing ,,als-related services4 7#b7 ,base payment amount 7,a7 #bjbe ,for coverage year #bjbe1 the ,secretary shall establish a single payment amount for ,,als-related services equal to #hjj for such services furnished for each visit during such year4 7,b7 #bjbf ,for coverage year #bjbf1 the ,secretary shall establish a single payment amount for ,,als-related services furnished for each visit during such year that is the greater of-- 7i7 the payment amount recommended by the ,comptroller ,general in the report described in subparagraph 7,d72 or 7ii7 the amount specified in subparagraph 7,a74 7,c7 ,subsequent years ,the ,secretary shall do each of the following3 7i7 ,annual increase ,for each coverage year beginning with coverage year #bjbg1 the ,secretary shall annually increase the payment amount for each visit determined under this paragraph by an ,,als services market basket percentage increase 7as determined by the ,secretary7 for the purpose of reflecting the year-to-year changes in the prices of an appropriate mix of goods and services that are ,,als-related services4 7ii7 ,reestablishment of amount ,for each coverage year beginning with coverage year #bjbh1 and every #c coverage years thereafter1 for the purpose of ensuring that the range of ,,als-related services is modernized over time1 the ,secretary shall reestablish a single payment amount for ,,als-related services furnished for each visit during such year that is the greater of-- 7,i7 the payment amount recommended by the ,comptroller ,general in the report described in clause 7i7 or 7ii7 of subparagraph 7,e71 as applicable2 or 7,,ii7 the payment amount specified pursuant to clause 7i74 7,d7 ,report by the comptroller general ,not later than ,january #a1 #bjbe1 the ,comptroller ,general shall1 in consultation with qualified providers that are representative of the types of qualified providers eligible for payment under this subsection1 submit to the ,secretary of ,health and ,human ,services a report that recommends a single payment amount for ,,als-related services that takes into account the average amount of payment for each item or service included in ,,als-related services that the ,comptroller ,general estimates would have been payable-- 7i7 under this title for such a service based on per patient utilization data from whichever single coverage year from #bjba through #bjbc has the highest per patient utilization of ,,als-related services1 even if such service is not payable for a particular ,,als individual because of the application of section #ahfb7;a77#a77;,a7 with respect to an item or service provided to such individual2 7ii7 in the case that an estimate is unable to be determined pursuant to clause 7i71 by health insurance issuers and group health plans 7as such terms are defined in section #bgia of the ,public ,health ,service ,act7 and ,,ma plans under part ,c for such a service1 based on such data from whichever single coverage year from #bjba through #bjbc has the highest per patient utilization of ,,als-related services2 and 7iii7 in the case that an estimate is unable to be determined pursuant to clause 7ii71 based on the recommendation of the ,specialty ,society ,relative ,value ,scale ,update ,committee of the ,american ,medical ,association or the estimate of the ,comptroller ,general for such a service4 7,e7 ,subsequent reports ,for the purpose of subparagraph 7,c77ii77,i71 the ,comptroller ,general shall1 not later than-- 7i7 ,january #a1 #bjbh1 submit a report to the ,secretary in accordance with subparagraph 7,d71 except such subparagraph shall be applied by substituting #bjbd through #bjbf for #bjba through #bjbc each place it appears2 and 7ii7 ,january #a1 #bjca1 and every #c years thereafter1 submit a report to the ,secretary in accordance with subparagraph 7,d71 after application of clause 7i71 except clause 7i7 shall be applied by substituting coverage years that are #c years later than the coverage years previously applicable for reports under clause 7i7 or this clause for #bjbd through #bjbf4 7#c7 ,payment adjustments ,the payment system under this subsection shall include a payment adjustment-- 7,a7 for a qualified provider that is participating in at least #a clinical trial identified on the clinicaltrials4gov database 7or any successor database7 of the ,national ,institutes of ,health to account for the increased costs borne by such a qualified provider during such a clinical trial2 and 7,b7 to account for a medical service or technology that is furnished as a part of ,,als-related services for which1 as determined by the ,secretary-- 7i7 payment for the service or technology as part of ,,als-related services under this section was not being made in the preceding coverage year2 and 7ii7 the cost of the service or technology is not insignificant in relation to the payment amount 7as determined under this subsection7 payable for ,,als-related services4 7#d7 ,mechanism for payments ,for purposes of making payments for ,,als-related services1 the ,secretary shall establish a mechanism under the payment system under this subsection which makes payment when a qualified provider submits a claim for reimbursement which includes1 with respect to a covered ,,als individual1 an alphanumeric code issued under the ,international ,classification of ,diseases1 #ajth ,revision1 ,clinical ,modification 7commonly referred to as ,,icd-#aj-;,,cm7 and its subsequent revisions that is for the treatment of a diagnosis of amyotrophic lateral sclerosis4 7#e7 ,no cost sharing ,payment under this subsection shall be made only on an assignment-related basis without any cost sharing4 7#f7 ,qualified provider defined ,in this section1 the term qualified provider means a provider of services or a clinic which-- 7,a7 is capable of furnishing care to a covered ,,als individual1 including by providing such services as providing specialized physician or nurse practitioner support1 occupational therapy support1 speech pathology support1 physical therapy1 dietary support1 respiratory support1 registered nurse support1 and coordination of the furnishing of durable medical equipment2 and 7,b7 meets such requirements as the ,secretary may prescribe by regulation to implement subparagraph 7,a71 in consultation with-- 7i7 covered ,,als individuals and their representatives2 7ii7 physicians who provide ,,als-related services and their representatives2 and 7iii7 professional and non-profit organizations with expertise in amyotrophic lateral sclerosis4 7e7 ,clarification ,payment under subsection 7d7 shall be in addition to1 and shall not supplant1 any payment that would be otherwise made to a provider of services1 physician1 practitioner1 supplier1 or laboratory under any other provision of this title for an item or service furnished to a covered ,,als individual4 7f7 ,implementation 7#a7 ,in general ,except as provided under paragraph 7#b71 the ,secretary may implement the provisions of this section by program instruction or otherwise4 7#b7 ,rulemaking ,the ,secretary shall implement subsections 7c7 and 7d77#f7 through notice and comment rulemaking4 7g7 ,funding ,for purposes of carrying out this section and subject to subsection 7e71 payment under this section shall be made from the ,federal ,supplementary ,medical ,insurance ,trust ,fund under section #ahda or from the ,federal ,hospital ,insurance ,trust ,fund under section #ahag4 4 7b7 ,conforming amendments 7#a7 ,ensuring supplemental payments for ,,als-related services ,section #ahcc7t7 of the ,social ,security ,act 7#db ,u4,s4,c4 #acie7t7 is amended by adding at the end the following new paragraph3 7#bc7 ,ensuring supplemental payments for ,,als-related services ,any covered ,,opd service furnished to a covered ,,als individual 7as defined in section #ahha;,b7b77 that is otherwise payable to a qualified provider 7as defined in section #ahha;,b7d77#f77 pursuant to paragraph 7#d7 shall be payable under such paragraph notwithstanding any payment made under section #ahha;,b7d74 4 7#b7 ,definition of arrangements ,section #ahfa7w77#a7 of the ,social ,security ,act 7#db ,u4,s4,c4 #aciex7w77#a77 is amended by inserting qualified provider 7as defined in section #ahha;,b7d77#f77 with respect to ,,als-related services 7as defined in section #ahha;,b7c771 before or hospice program4 #d4 ,report on challenges with respect to the administration and staffing of amyotrophic lateral sclerosis clinical trials ,not later than #ij days after the date of the enactment of this ,act1 the ,secretary of ,health and ,human ,services1 acting through the ,director of the ,national ,institute of ,neurological ,disorders and ,stroke1 shall submit to ,congress and publish on the ,internet website of the agency a report that identifies-- 7#a7 any challenges with respect to the administration and staffing of clinical trials for the prevention1 diagnosis1 mitigation1 treatment1 or cure of amyotrophic lateral sclerosis2 7#b7 actions that the ,director of the ,national ,institute of ,neurological ,disorders and ,stroke will take to address such challenges2 and 7#c7 any legislative recommendations 7including requests for appropriations7 to further improve the administration of such clinical trials4