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 diag-
nosed 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) intro-
duced 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 pro-
gram for individuals diagnosed with amyotrophic lateral 
sclerosis, and for other purposes. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘ALS Better Care Act’’. 
SEC. 2. FINDINGS. 
Congress makes the following findings: 
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(1) Amyotrophic lateral sclerosis (in this sec-
tion, referred to as ‘‘ALS’’) is a progressive and de-
bilitating neurodegenerative disease. 
(2) Key services that include (but are not lim-
ited to) evidence of providing specialized physician 
or nurse practitioner support, occupational therapy 
support, speech pathology support, physical therapy, 
dietary support, respiratory support, registered 
nurse support, and coordination of the furnishing of 
durable medical equipment are crucial for managing 
the complex medical needs of ALS patients. 
(3) Studies have shown ALS clinics that pro-
vide these key services to ALS patients extend these 
patients’ lifespans and improve the quality of their 
lives. 
(4) These key services are furnished by a range 
of healthcare professionals. 
(5) Facilities providing care to ALS patients 
currently face inadequate Medicare reimbursement 
for the key services they offer to these patients. 
(6) Insufficient reimbursement creates signifi-
cant challenges for facilities specializing in ALS 
care, resulting in extended wait times for patients in 
need of crucial services and hampering the ability of 
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these facilities to innovate and improve the quality 
of care provided to ALS patients. 
(7) Improved reimbursement rates would en-
courage facilities to invest in research, innovation, 
and technology, leading to enhanced treatment op-
tions for ALS and improved patient outcomes. 
(8) Remote medical management options for in-
dividuals suffering from ALS must be a crucial part 
of access to care for such individuals, especially 
those living in rural areas or care deserts. 
(9) Telehealth is an essential management op-
tion referred to in paragraph (6) and can assist in 
delivering timely and comprehensive care, 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 members. 
(10) Telehealth is especially important in main-
taining access to care for ALS patients as the dis-
ease progresses and ALS patients have more limited 
mobility, which may make it challenging to attend 
in-person appointments regularly. 
(11) Low funding and difficulty in staffing for 
ALS clinical trials delay the development and avail-
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ability of potential treatments and therapies for indi-
viduals living with the disease. 
(12) Inadequate funding for ALS clinical trials 
also impedes the ability to attract and retain quali-
fied researchers, clinicians, and support staff, lim-
iting the overall progress and success of these trials. 
SEC. 3. PROVIDING FOR COVERAGE OF ALS-RELATED SERV-
ICES UNDER THE MEDICARE PROGRAM FOR 
INDIVIDUALS 
DIAGNOSED 
WITH 
AMYOTROPHIC LATERAL SCLEROSIS. 
(a) IN GENERAL.—Subtitle E of title XVIII of the 
Social Security Act (42 U.S.C. 1395 et seq.) is amended 
by inserting after section 1881A the following new section: 
‘‘SEC. 1881B. MEDICARE COVERAGE OF ALS-RELATED SERV-
ICES FOR INDIVIDUALS DIAGNOSED WITH 
AMYOTROPHIC LATERAL SCLEROSIS. 
‘‘(a) IN GENERAL.—In the case of a covered ALS 
individual, the Secretary shall establish a supplemental fa-
cility-based payment system described in subsection (d) 
for ALS-related services provided to such an individual. 
‘‘(b) COVERED ALS INDIVIDUAL.—For purposes of 
this section, the term ‘covered ALS individual’ means an 
individual 
who 
is 
medically 
determined 
to 
have 
amyotrophic lateral sclerosis (as described in section 
226(h)). 
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‘‘(c) ALS-RELATED SERVICES.—For purposes of this 
section, 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 (or by oth-
ers under arrangements with them made by the qualified 
provider) for the care and treatment of such an individual 
with respect to the progression of amyotrophic lateral scle-
rosis. 
‘‘(d) PAYMENT SYSTEM.— 
‘‘(1) AUTHORITY.—The Secretary shall estab-
lish a payment system under which a single payment 
determined in accordance with the succeeding para-
graphs is made to a qualified provider for ALS-re-
lated services furnished to a covered ALS individual 
during a visit beginning on and after January 1, 
2025, for the purpose of reimbursing the qualified 
provider (or clinic, if applicable) for furnishing ALS- 
related services. 
‘‘(2) BASE PAYMENT AMOUNT.— 
‘‘(A) 2025.—For coverage year 2025, the 
Secretary shall establish a single payment 
amount for ALS-related services equal to $800 
for such services furnished for each visit during 
such year. 
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‘‘(B) 2026.—For coverage year 2026, the 
Secretary shall establish a single payment 
amount for ALS-related services furnished for 
each visit during such year that is the greater 
of— 
‘‘(i) 
the 
payment 
amount 
rec-
ommended by the Comptroller General in 
the report described in subparagraph 
(D)(i); or 
‘‘(ii) the amount specified in subpara-
graph (A). 
‘‘(C) SUBSEQUENT YEARS.—The Secretary 
shall do each of the following: 
‘‘(i) ANNUAL
INCREASE.—For each 
coverage year beginning with coverage year 
2027, the Secretary shall annually increase 
the payment amount for each visit deter-
mined under this paragraph by an ALS 
services market basket percentage increase 
(as determined by the Secretary) for the 
purpose of reflecting the year-to-year 
changes in the prices of an appropriate 
mix of goods and services that are ALS-re-
lated services. 
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‘‘(ii) 
REESTABLISHMENT
OF 
AMOUNT.—For each coverage year begin-
ning with coverage year 2028, and every 
three coverage years thereafter, the Sec-
retary shall reestablish a single payment 
amount for ALS-related services furnished 
for each visit during such year that is the 
greater of— 
‘‘(I) the payment amount rec-
ommended by the Comptroller General 
in the report described in subclause 
(I) or (II) of subparagraph (D)(ii), as 
appropriate; or 
‘‘(II) the payment amount speci-
fied pursuant to clause (i); for the 
purpose of ensuring that the range of 
ALS-related services is modernized 
over time. 
‘‘(D) REPORT BY THE COMPTROLLER GEN-
ERAL.—Not later than January 1, 2025, the 
Comptroller General shall, in consultation with 
qualified providers that are representative of 
the types of qualified providers eligible for pay-
ment under this subsection, submit to the Sec-
retary of Health and Human Services a report 
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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— 
‘‘(i) under this title for such a service 
based on per patient utilization data from 
whichever single coverage year from 2021 
through 2023 has the highest per patient 
utilization of ALS-related services, even if 
such service is not payable for a particular 
ALS individual because of the application 
of section 1862(a)(1)(A) with respect to an 
item or service provided to such individual; 
‘‘(ii) in the case an estimate is unable 
to be determined pursuant to subclause 
(I), by health insurance issuers and group 
health plans (as such terms are defined in 
section 2791 of the Public Health Service 
Act) and MA plans under part C for such 
a service, based on such data from which-
ever single coverage year from 2021 
through 2023 has the highest per patient 
utilization of ALS-related services; and 
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‘‘(iii) in the case an estimate is unable 
to be determined pursuant to subclause 
(II), based on the recommendation of the 
Specialty Society Relative Value Scale Up-
date Committee of the American Medical 
Association or the estimate of the Comp-
troller General for such a service. 
‘‘(E) SUBSEQUENT
REPORTS.—For the 
purpose of subparagraph (C)(ii)(I), the Comp-
troller General shall, not later than— 
‘‘(i) January 1, 2028, submit a report 
to the Secretary in accordance with clause 
(i), except by substituting ‘2021 through 
2023’ for ‘2024 through 2026’; and 
‘‘(ii) three years after the date speci-
fied in subclause (I), and every three years 
thereafter, submit a report to the Sec-
retary in accordance with such clause (i), 
except by substituting the coverage years 
for the previous report with coverage years 
that are three years later. 
‘‘(3) PAYMENT
ADJUSTMENTS.—The payment 
system under this subsection shall include a payment 
adjustment— 
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‘‘(A) for a qualified provider that is par-
ticipating in at least one clinical trial identified 
on the clinicaltrials.gov database (or any suc-
cessor database) of the National Institutes of 
Health to account for the increased costs borne 
by such a qualified provider during such a clin-
ical trial; and 
‘‘(B) for a medical service or technology 
which is furnished as a part of ALS-related 
services for which, as determined by the Sec-
retary— 
‘‘(i) payment for the service or tech-
nology as part of ALS-related services 
under this section was not being made in 
the preceding coverage year; and 
‘‘(ii) the cost of the service or tech-
nology is not insignificant in relation to the 
payment amount (as determined under this 
subsection) payable for ALS-related serv-
ices. 
‘‘(4) MECHANISM
FOR
PAYMENTS.—For pur-
poses of making payments for ALS-related services, 
the Secretary shall establish a mechanism under the 
payment system under this subsection which makes 
payment when a qualified provider submits a claim 
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for reimbursement which includes, with respect to a 
covered ALS individual, an alphanumeric code 
issued under the International Classification of Dis-
eases, 10th Revision, Clinical Modification (‘ICD– 
10–CM’) and its subsequent revisions that is for the 
treatment of a diagnosis of amyotrophic lateral scle-
rosis. 
‘‘(5) NO COST SHARING.—Payment under this 
subsection shall be made only on an assignment-re-
lated basis without any cost sharing. 
‘‘(6) QUALIFIED PROVIDER DEFINED.—In this 
section, the term ‘qualified provider’ means a pro-
vider of services which— 
‘‘(A) is capable of furnishing care to a cov-
ered ALS individual that includes (but is not 
limited to) evidence of providing specialized 
physician or nurse practitioner support, occupa-
tional therapy support, speech pathology sup-
port, physical therapy, dietary support, res-
piratory support, registered nurse support, and 
coordination of the furnishing of durable med-
ical equipment; and 
‘‘(B) meets requirements as the Secretary 
prescribes by regulation to implement subpara-
graph (A), in consultation with— 
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‘‘(i) covered ALS individuals and their 
representatives; 
‘‘(ii) physicians who provide ALS-re-
lated services and their representatives; 
and 
‘‘(iii) professional and non-profit orga-
nizations with expertise in amyotrophic lat-
eral sclerosis. 
‘‘(e) CLARIFICATION.—Payment under subsection (d) 
shall be in addition to, and shall not supplant, any pay-
ment that would be otherwise made to a provider of serv-
ices, physician, practitioner, supplier, or laboratory under 
any other provision of this title for an item or service fur-
nished to a covered ALS individual. 
‘‘(f) IMPLEMENTATION.— 
‘‘(1) IN GENERAL.—Except as provided under 
paragraph (2), the Secretary may implement the 
provisions of this section by program instruction or 
otherwise. 
‘‘(2) RULEMAKING.—The Secretary shall imple-
ment subsections (c) and (d)(6) through notice and 
comment rulemaking. 
‘‘(g) FUNDING.—For purposes of carrying out this 
section, subject to subsection (e), payment under this sec-
tion shall be made from the Federal Supplementary Med-
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ical Insurance Trust Fund under section 1841 or from 
the Federal Hospital Insurance Trust Fund under section 
1817.’’. 
(b) CONFORMING AMENDMENTS.— 
(1) Section 1833(t) of the Social Security Act 
(42 U.S.C. 1395(t)) is amended by adding at the 
end the following new paragraph: 
‘‘(23) ENSURING
SUPPLEMENTAL
PAYMENTS 
FOR
ALS-RELATED
SERVICES.—Any covered OPD 
service furnished to a covered ALS individual (as de-
fined in section 1881B(b)) that is otherwise payable 
to a qualified provider (as defined in section 
1881B(d)(6)) pursuant to paragraph (4) shall be 
payable under such paragraph notwithstanding any 
payment made under section 1881B(d).’’. 
(2) Section 1861(w)(1) of the Social Security 
Act (42 U.S.C. 1395x(w)(1)) is amended by insert-
ing ‘‘qualified provider (as defined in section 
1881B(d)(6)(A)) with respect to ALS-related serv-
ices (as defined in section 1881B(c)),’’ before ‘‘or 
hospice program’’. 
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SEC. 4. REPORT ON CHALLENGES WITH RESPECT TO THE 
ADMINISTRATION 
AND 
STAFFING 
OF 
AMYOTROPHIC LATERAL SCLEROSIS CLIN-
ICAL TRIALS. 
Not later than 90 days after the date of the enact-
ment of this Act, the Secretary of Health and Human 
Services, acting through the Director of the National In-
stitute of Neurological Disorders and Stroke of the Na-
tional Institutes of Health, shall submit to Congress and 
publish on the internet website of the agency a report that 
identifies— 
(1) any challenges with respect to the adminis-
tration and staffing of clinical trials for the preven-
tion, diagnosis, mitigation, treatment, or cure of 
amyotrophic lateral sclerosis; 
(2) actions that the Director of the National In-
stitute of Neurological Disorders and Stroke to ad-
dress such challenges; and 
(3) any legislative recommendations (including 
requests for appropriations) to further improve the 
administration of such clinical trials. 
SEC. 5. EFFECTIVE DATE. 
The amendments made by this Act shall take effect 
on the date of the enactment of this Act. 
Æ 
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