,,ii #aaith ,,congress #b;d ,session ,s4 #cgfc ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,february #c1 #bjbf,ms4 ,murkowski 7for herself and ,mr4 ,coons7 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 services 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 equipment 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 a crucial part of access to care for such individuals1 especially those living in rural areas or care deserts4 7#i7 ,telehealth is an essential management option 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 distances--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 ,,als patients 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 ,section #ahfa of the ,social ,security ,act 7#db ,u4,s4,c4 #aciex7 is amended-- 7#a7 in subsection 7s77#b7-- 7,a7 by adding and at the end of subparagraph 7,,jj72 and 7,b7 by adding at the end the following new subparagraph3 7,,kk7 ,,als-related services 7as defined in subsection 7nnn77 furnished on or after ,january #a1 #bjbg2 2 and 7#b7 by adding at the end the following new subsection3 7nnn7 ,,als-,related services 7#a7 ,,als-related services ,the term ,,als-related services means the following items and services that are furnished to a covered ,,als individual in an outpatient setting by a qualified provider 7as defined in section #ahcd7;aa77#f77 7or by another provider of services under an arrangement made by a qualified provider7 for the care and treatment of such an individual with respect to the progression of amyotrophic lateral sclerosis3 7,a7 ,specialized physician or nurse practitioner support4 7,b7 ,occupational therapy support4 7,c7 ,speech pathology support4 7,d7 ,physical therapy4 7,e7 ,dietary support4 7,f7 ,respiratory support4 7,g7 ,registered nurse support4 7,h7 ,coordination of the furnishing of durable medical equipment necessary for the management of the complex medical needs of a covered ,,als individual4 7#b7 ,covered ,,als individual ,the term covered ,,als individual means an individual who is medically determined to have amyotrophic lateral sclerosis 7as described in section #bbf7;h774 4 7b7 ,payment for ,,als-,related services ,section #ahcd of the ,social ,security ,act 7#db ,u4,s4,c4 #aciem7 is amended by adding at the end the following new subsections3 7aa7 ,payment for ,,als-,related services 7#a7 ,in general ,the ,secretary shall implement a payment system under which a single payment determined in accordance with the succeeding paragraphs is made to a qualified provider 7as defined in paragraph 7#f77 for ,,als-related services 7as defined in paragraph 7#a7 of section #ahfa7nnn77 furnished to a covered ,,als individual 7as defined in paragraph 7#b7 of such section7 during a visit1 in addition to any other payment that may be made for such services under this title4 7#b7 ,base payment amount 7,a7 ,in general ,the amount of the single payment described in paragraph 7#a7 for ,,als-related services furnished during a year is equal to-- 7i7 for #bjbg1 #hjj2 7ii7 for #bjbh1 #hjj 7or1 if greater1 the payment amount recommended by the ,comptroller ,general of the ,united ,states in the report described in subparagraph 7,c772 and 7iii7 for #bjbi and each subsequent year-- 7,i7 the amount for the preceding year1 increased by the ,,als services market basket percentage increase 7as defined in clause 7i7 of subparagraph 7,b77 for such year2 or 7,,ii7 in the case such year is an applicable year 7as defined in clause 7ii7 of such subparagraph71 the payment amount recommended by the ,comptroller ,general in the most recent report submitted under subparagraph 7,c71 if greater than the amount that would be determined for such year under subclause 7,i74 7,b7 ,definitions ,in this paragraph3 7i7 ,,als services market basket percentage increase ,the term ,,als services market basket percentage increase means1 for a year1 the ,secretary's estimate of the percentage increase in costs of an appropriate mix1 as determined by the ,secretary1 of items and services that are ,,als-related services over the preceding year4 7ii7 ,applicable year ,the term applicable year means #bjcj and every third year thereafter4 7,c7 ,report by the ,comptroller ,general 7i7 ,in general ,not later than ,january #a1 #bjbg1 and not later than ,january #a of every third year thereafter1 the ,comptroller ,general of the ,united ,states shall1 in consultation with qualified providers eligible for payment under this subsection1 submit to the ,secretary 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-- 7,i7 under this title for such a service based on per patient utilization data from whichever single year during the covered period 7as defined in clause 7ii77 with respect to such report has the highest per patient utilization of ,,als-related services1 even if such service is not payable for a particular covered ,,als individual because of the application of section #ahfb7;a77#a77;,a7 with respect to an item or service provided to such individual2 7,,ii7 in the case an estimate is unable to be determined pursuant to subclause 7,i71 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 year during the covered period with respect to such report has the highest per patient utilization of ,,als-related services2 and 7,,iii7 in the case an estimate is unable to be determined pursuant to subclause 7,,ii71 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 7ii7 ,definition of covered period ,in this subparagraph1 the term covered period means-- 7,i7 with respect to the first report submitted under this subparagraph1 #bjbb through #bjbd2 7,,ii7 with respect to the second such report1 #bjbf through #bjbh2 and 7,,iii7 with respect to the third report and each subsequent report1 the period that begins #c years after the covered period for the preceding report4 7#c7 ,payment adjustments ,the payment system under this subsection shall include a payment adjustment-- 7,a7 for each qualified provider that is participating in at least one clinical trial identified on the clinicaltrials4gov database 7or any successor database7 of the ,national ,institutes of ,health to account for the increased cost borne by such a qualified provider during such a clinical trial2 and 7,b7 for a medical service or technology which is furnished as a part of ,,als-related services for which1 as determined by the ,secretary-- 7i7 payment under this subsection for such service or technology was not being made in the preceding year2 and 7ii7 the cost of such 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 payment which includes1 with respect to a covered ,,als individual1 an alphanumeric code issued under the ,international ,classification of ,diseases1 #ajth ,revision1 ,clinical ,modification 7,,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 ,in this section1 the term qualified provider means a provider of services that-- 7,a7 is capable of furnishing ,,als-related services2 and 7,b7 meets requirements as the ,secretary prescribes 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 7#g7 ,implementation 7,a7 ,in general ,except as provided under subparagraph 7,b71 the ,secretary may implement the provisions of this subsection by program instruction or otherwise4 7,b7 ,rulemaking ,the ,secretary shall implement paragraph 7#f71 through notice and comment rulemaking4 4 7c7 ,conforming amendments 7#a7 ,section #ahcc7t7 ,section #ahcc7t7 of the ,social ,security ,act 7#db ,u4,s4,c4 #acie7t77 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 #ahfa7nnn77#b77 that is otherwise payable to a qualified provider 7as defined in section #ahcd7;aa77#f77 pursuant to paragraph 7#d7 shall be payable under such paragraph notwithstanding any payment made under section #ahcd7;aa74 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 #ahcd7;aa77#f77 with respect to ,,als-related services 7as defined in subsection 7nnn771 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 ,stroke of the ,national ,institutes of ,health1 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 can take to address such challenges2 and 7#c7 any legislative recommendations 7including requests for appropriations7 to further improve the administration of such clinical trials4