I 

118TH CONGRESS 

1ST SESSION H. R. 5663 

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 sclerosis, and for other purposes. 

IN THE HOUSE OF REPRESENTATIVES 

SEPTEMBER 21, 2023 

Ms. SCHAKOWSKY (for herself, Mr. QUIGLEY, Mr. FITZPATRICK, Mr. CROW, 

Mr. BACON, Mr. JACKSON of Illinois, and Mr. BISHOP of Georgia) introduced the following bill; which was referred to the Committee on Energy 

and Commerce, and in addition to the Committee on Ways and Means, 

for a period to be subsequently determined by the Speaker, in each case 

for consideration of such provisions as fall within the jurisdiction of the 

committee concerned 

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 

sclerosis, and for other purposes. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘ALS Better Care Act’’. 

5 SEC. 2. FINDINGS. 

6 Congress makes the following findings: 


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1 (1) Amyotrophic lateral sclerosis (in this sec2 tion, referred to as ‘‘ALS’’) is a progressive and de3 bilitating neurodegenerative disease. 

4 (2) Key services that include (but are not lim5 ited to) evidence of providing specialized physician 

6 or nurse practitioner support, occupational therapy 

7 support, speech pathology support, physical therapy, 

8 dietary support, respiratory support, registered 

9 nurse support, and coordination of the furnishing of 

10 durable medical equipment are crucial for managing 

11 the complex medical needs of ALS patients. 

12 (3) Studies have shown ALS clinics that pro13 vide these key services to ALS patients extend these 

14 patients’ lifespans and improve the quality of their 

15 lives. 

16 (4) These key services are furnished by a range 

17 of healthcare professionals. 

18 (5) Facilities providing care to ALS patients 

19 currently face inadequate Medicare reimbursement 

20 for the key services they offer to these patients. 

21 (6) Insufficient reimbursement creates signifi22 cant challenges for facilities specializing in ALS 

23 care, resulting in extended wait times for patients in 

24 need of crucial services and hampering the ability of 


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1 these facilities to innovate and improve the quality 

2 of care provided to ALS patients. 

3 (7) Improved reimbursement rates would en4 courage facilities to invest in research, innovation, 

5 and technology, leading to enhanced treatment op6 tions for ALS and improved patient outcomes. 

7 (8) Remote medical management options for in8 dividuals suffering from ALS must be a crucial part 

9 of access to care for such individuals, especially 

10 those living in rural areas or care deserts. 

11 (9) Telehealth is an essential management op12 tion referred to in paragraph (6) and can assist in 

13 delivering timely and comprehensive care, as ALS 

14 patients living in rural areas or care deserts often 

15 face challenges in accessing specialized ALS care 

16 and could otherwise be required to travel long travel 

17 distances—often with caregivers or family members. 

18 (10) Telehealth is especially important in main19 taining access to care for ALS patients as the dis20 ease progresses and ALS patients have more limited 

21 mobility, which may make it challenging to attend 

22 in-person appointments regularly. 

23 (11) Low funding and difficulty in staffing for 

24 ALS clinical trials delay the development and availVerDate Sep 11 2014 00:07 Nov 30, 2023 Jkt 049200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H5663.IH H5663

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1 ability of potential treatments and therapies for indi2 viduals living with the disease. 

3 (12) Inadequate funding for ALS clinical trials 

4 also impedes the ability to attract and retain quali5 fied researchers, clinicians, and support staff, lim6 iting the overall progress and success of these trials. 

7 SEC. 3. PROVIDING FOR COVERAGE OF ALS-RELATED SERV8 ICES UNDER THE MEDICARE PROGRAM FOR 

9 INDIVIDUALS DIAGNOSED WITH 

10 AMYOTROPHIC LATERAL SCLEROSIS. 

11 (a) IN GENERAL.—Subtitle E of title XVIII of the 

12 Social Security Act (42 U.S.C. 1395 et seq.) is amended 

13 by inserting after section 1881A the following new section: 

14 ‘‘SEC. 1881B. MEDICARE COVERAGE OF ALS-RELATED SERV15 ICES FOR INDIVIDUALS DIAGNOSED WITH 

16 AMYOTROPHIC LATERAL SCLEROSIS. 

17 ‘‘(a) IN GENERAL.—In the case of a covered ALS 

18 individual, the Secretary shall establish a supplemental fa19 cility-based payment system described in subsection (d) 

20 for ALS-related services provided to such an individual. 

21 ‘‘(b) COVERED ALS INDIVIDUAL.—For purposes of 

22 this section, the term ‘covered ALS individual’ means an 

23 individual who is medically determined to have 

24 amyotrophic lateral sclerosis (as described in section 

25 226(h)). 


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1 ‘‘(c) ALS-RELATED SERVICES.—For purposes of this 

2 section, the term ‘ALS-related services’ means items and 

3 services that are furnished to a covered ALS individual 

4 in an outpatient setting by a qualified provider (or by oth5 ers under arrangements with them made by the qualified 

6 provider) for the care and treatment of such an individual 

7 with respect to the progression of amyotrophic lateral scle8 rosis. 

9 ‘‘(d) PAYMENT SYSTEM.— 

10 ‘‘(1) AUTHORITY.—The Secretary shall estab11 lish a payment system under which a single payment 

12 determined in accordance with the succeeding para13 graphs is made to a qualified provider for ALS-re14 lated services furnished to a covered ALS individual 

15 during a visit beginning on and after January 1, 

16 2025, for the purpose of reimbursing the qualified 

17 provider (or clinic, if applicable) for furnishing ALS18 related services. 

19 ‘‘(2) BASE PAYMENT AMOUNT.— 

20 ‘‘(A) 2025.—For coverage year 2025, the 

21 Secretary shall establish a single payment 

22 amount for ALS-related services equal to $800 

23 for such services furnished for each visit during 

24 such year. 


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1 ‘‘(B) 2026.—For coverage year 2026, the 

2 Secretary shall establish a single payment 

3 amount for ALS-related services furnished for 

4 each visit during such year that is the greater 

5 of— 

6 ‘‘(i) the payment amount rec7 ommended by the Comptroller General in 

8 the report described in subparagraph 

9 (D)(i); or 

10 ‘‘(ii) the amount specified in subpara11 graph (A). 

12 ‘‘(C) SUBSEQUENT YEARS.—The Secretary 

13 shall do each of the following: 

14 ‘‘(i) ANNUAL INCREASE.—For each 

15 coverage year beginning with coverage year 

16 2027, the Secretary shall annually increase 

17 the payment amount for each visit deter18 mined under this paragraph by an ALS 

19 services market basket percentage increase 

20 (as determined by the Secretary) for the 

21 purpose of reflecting the year-to-year 

22 changes in the prices of an appropriate 

23 mix of goods and services that are ALS-re24 lated services. 


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1 ‘‘(ii) REESTABLISHMENT OF

2 AMOUNT.—For each coverage year begin3 ning with coverage year 2028, and every 

4 three coverage years thereafter, the Sec5 retary shall reestablish a single payment 

6 amount for ALS-related services furnished 

7 for each visit during such year that is the 

8 greater of— 

9 ‘‘(I) the payment amount rec10 ommended by the Comptroller General 

11 in the report described in subclause 

12 (I) or (II) of subparagraph (D)(ii), as 

13 appropriate; or 

14 ‘‘(II) the payment amount speci15 fied pursuant to clause (i); for the 

16 purpose of ensuring that the range of 

17 ALS-related services is modernized 

18 over time. 

19 ‘‘(D) REPORT BY THE COMPTROLLER GEN20 ERAL.—Not later than January 1, 2025, the 

21 Comptroller General shall, in consultation with 

22 qualified providers that are representative of 

23 the types of qualified providers eligible for pay24 ment under this subsection, submit to the Sec25 retary of Health and Human Services a report 


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1 that recommends a single payment amount for 

2 ALS-related services that takes into account the 

3 average amount of payment for each item or 

4 service included in ALS-related services that 

5 the Comptroller General estimates would have 

6 been payable— 

7 ‘‘(i) under this title for such a service 

8 based on per patient utilization data from 

9 whichever single coverage year from 2021 

10 through 2023 has the highest per patient 

11 utilization of ALS-related services, even if 

12 such service is not payable for a particular 

13 ALS individual because of the application 

14 of section 1862(a)(1)(A) with respect to an 

15 item or service provided to such individual; 

16 ‘‘(ii) in the case an estimate is unable 

17 to be determined pursuant to subclause 

18 (I), by health insurance issuers and group 

19 health plans (as such terms are defined in 

20 section 2791 of the Public Health Service 

21 Act) and MA plans under part C for such 

22 a service, based on such data from which23 ever single coverage year from 2021 

24 through 2023 has the highest per patient 

25 utilization of ALS-related services; and 


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1 ‘‘(iii) in the case an estimate is unable 

2 to be determined pursuant to subclause 

3 (II), based on the recommendation of the 

4 Specialty Society Relative Value Scale Up5 date Committee of the American Medical 

6 Association or the estimate of the Comp7 troller General for such a service. 

8 ‘‘(E) SUBSEQUENT REPORTS.—For the 

9 purpose of subparagraph (C)(ii)(I), the Comp10 troller General shall, not later than— 

11 ‘‘(i) January 1, 2028, submit a report 

12 to the Secretary in accordance with clause 

13 (i), except by substituting ‘2021 through 

14 2023’ for ‘2024 through 2026’; and 

15 ‘‘(ii) three years after the date speci16 fied in subclause (I), and every three years 

17 thereafter, submit a report to the Sec18 retary in accordance with such clause (i), 

19 except by substituting the coverage years 

20 for the previous report with coverage years 

21 that are three years later. 

22 ‘‘(3) PAYMENT ADJUSTMENTS.—The payment 

23 system under this subsection shall include a payment 

24 adjustment— 


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1 ‘‘(A) for a qualified provider that is par2 ticipating in at least one clinical trial identified 

3 on the clinicaltrials.gov database (or any suc4 cessor database) of the National Institutes of 

5 Health to account for the increased costs borne 

6 by such a qualified provider during such a clin7 ical trial; and 

8 ‘‘(B) for a medical service or technology 

9 which is furnished as a part of ALS-related 

10 services for which, as determined by the Sec11 retary— 

12 ‘‘(i) payment for the service or tech13 nology as part of ALS-related services 

14 under this section was not being made in 

15 the preceding coverage year; and 

16 ‘‘(ii) the cost of the service or tech17 nology is not insignificant in relation to the 

18 payment amount (as determined under this 

19 subsection) payable for ALS-related serv20 ices. 

21 ‘‘(4) MECHANISM FOR PAYMENTS.—For pur22 poses of making payments for ALS-related services, 

23 the Secretary shall establish a mechanism under the 

24 payment system under this subsection which makes 

25 payment when a qualified provider submits a claim 


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1 for reimbursement which includes, with respect to a 

2 covered ALS individual, an alphanumeric code 

3 issued under the International Classification of Dis4 eases, 10th Revision, Clinical Modification (‘ICD– 

5 10–CM’) and its subsequent revisions that is for the 

6 treatment of a diagnosis of amyotrophic lateral scle7 rosis. 

8 ‘‘(5) NO COST SHARING.—Payment under this 

9 subsection shall be made only on an assignment-re10 lated basis without any cost sharing. 

11 ‘‘(6) QUALIFIED PROVIDER DEFINED.—In this 

12 section, the term ‘qualified provider’ means a pro13 vider of services which— 

14 ‘‘(A) is capable of furnishing care to a cov15 ered ALS individual that includes (but is not 

16 limited to) evidence of providing specialized 

17 physician or nurse practitioner support, occupa18 tional therapy support, speech pathology sup19 port, physical therapy, dietary support, res20 piratory support, registered nurse support, and 

21 coordination of the furnishing of durable med22 ical equipment; and 

23 ‘‘(B) meets requirements as the Secretary 

24 prescribes by regulation to implement subpara25 graph (A), in consultation with— 


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1 ‘‘(i) covered ALS individuals and their 

2 representatives; 

3 ‘‘(ii) physicians who provide ALS-re4 lated services and their representatives; 

5 and 

6 ‘‘(iii) professional and non-profit orga7 nizations with expertise in amyotrophic lat8 eral sclerosis. 

9 ‘‘(e) CLARIFICATION.—Payment under subsection (d) 

10 shall be in addition to, and shall not supplant, any pay11 ment that would be otherwise made to a provider of serv12 ices, physician, practitioner, supplier, or laboratory under 

13 any other provision of this title for an item or service fur14 nished to a covered ALS individual. 

15 ‘‘(f) IMPLEMENTATION.— 

16 ‘‘(1) IN GENERAL.—Except as provided under 

17 paragraph (2), the Secretary may implement the 

18 provisions of this section by program instruction or 

19 otherwise. 

20 ‘‘(2) RULEMAKING.—The Secretary shall imple21 ment subsections (c) and (d)(6) through notice and 

22 comment rulemaking. 

23 ‘‘(g) FUNDING.—For purposes of carrying out this 

24 section, subject to subsection (e), payment under this sec25 tion shall be made from the Federal Supplementary MedVerDate Sep 11 2014 00:07 Nov 30, 2023 Jkt 049200 PO 00000 Frm 00012 Fmt 6652 Sfmt 6201 E:\BILLS\H5663.IH H5663

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1 ical Insurance Trust Fund under section 1841 or from 

2 the Federal Hospital Insurance Trust Fund under section 

3 1817.’’. 

4 (b) CONFORMING AMENDMENTS.— 

5 (1) Section 1833(t) of the Social Security Act 

6 (42 U.S.C. 1395(t)) is amended by adding at the 

7 end the following new paragraph: 

8 ‘‘(23) ENSURING SUPPLEMENTAL PAYMENTS

9 FOR ALS-RELATED SERVICES.—Any covered OPD 

10 service furnished to a covered ALS individual (as de11 fined in section 1881B(b)) that is otherwise payable 

12 to a qualified provider (as defined in section 

13 1881B(d)(6)) pursuant to paragraph (4) shall be 

14 payable under such paragraph notwithstanding any 

15 payment made under section 1881B(d).’’. 

16 (2) Section 1861(w)(1) of the Social Security 

17 Act (42 U.S.C. 1395x(w)(1)) is amended by insert18 ing ‘‘qualified provider (as defined in section 

19 1881B(d)(6)(A)) with respect to ALS-related serv20 ices (as defined in section 1881B(c)),’’ before ‘‘or 

21 hospice program’’. 


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1 SEC. 4. REPORT ON CHALLENGES WITH RESPECT TO THE 

2 ADMINISTRATION AND STAFFING OF 

3 AMYOTROPHIC LATERAL SCLEROSIS CLIN4 ICAL TRIALS. 

5 Not later than 90 days after the date of the enact6 ment of this Act, the Secretary of Health and Human 

7 Services, acting through the Director of the National In8 stitute of Neurological Disorders and Stroke of the Na9 tional Institutes of Health, shall submit to Congress and 

10 publish on the internet website of the agency a report that 

11 identifies— 

12 (1) any challenges with respect to the adminis13 tration and staffing of clinical trials for the preven14 tion, diagnosis, mitigation, treatment, or cure of 

15 amyotrophic lateral sclerosis; 

16 (2) actions that the Director of the National In17 stitute of Neurological Disorders and Stroke to ad18 dress such challenges; and 

19 (3) any legislative recommendations (including 

20 requests for appropriations) to further improve the 

21 administration of such clinical trials. 

22 SEC. 5. EFFECTIVE DATE. 

23 The amendments made by this Act shall take effect 

24 on the date of the enactment of this Act. 

Æ 


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