H.R. 7336

[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H.R. 7336 Introduced in House (IH)]

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119th CONGRESS
2d Session
H. R. 7336

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

February 3, 2026

Ms. Schakowsky (for herself, Mr. Fitzpatrick, Mr. Crow, and Mr. 
Quigley) 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.

Be it enacted by the Senate and House of Representatives 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:
(1) Amyotrophic lateral sclerosis (in this section, 
referred to as ``ALS'') is a progressive and debilitating 
neurodegenerative disease.
(2) Key services that include (but are not limited to) 
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 provide 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 significant 
challenges for facilities specializing in ALS care, 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 patients.
(7) Improved reimbursement rates would encourage facilities 
to invest in research, innovation, and technology, leading to 
enhanced treatment options for ALS and improved patient 
outcomes.
(8) Remote medical management options for individuals 
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 option referred 
to in paragraph (8) 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 distances--
often with caregivers or family members.
(10) Telehealth is especially important in maintaining 
access to care for ALS patients as the disease 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 availability of 
potential treatments and therapies for individuals living with 
the disease.
(12) Inadequate funding for ALS clinical trials also 
impedes the ability to attract and retain qualified 
researchers, clinicians, and support staff, limiting the 
overall progress and success of these trials.

SEC. 3. PROVIDING FOR COVERAGE OF ALS-RELATED SERVICES UNDER THE 
MEDICARE PROGRAM FOR INDIVIDUALS DIAGNOSED WITH 
AMYOTROPHIC LATERAL SCLEROSIS.

(a) In General.--Section 1861 of the Social Security Act (42 U.S.C. 
1395x) is amended--
(1) in subsection (s)(2)--
(A) by adding ``and'' at the end of subparagraph 
(JJ); and
(B) by adding at the end the following new 
subparagraph:
``(KK) ALS-related services (as defined in 
subsection (nnn)) furnished on or after January 1, 
2027;''; and
(2) by adding at the end the following new subsection:
``(nnn) ALS-Related Services.--
``(1) 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 (as defined in section 1834(aa)(6)) (or 
by another provider of services under an arrangement made by a 
qualified provider) for the care and treatment of such an 
individual with respect to the progression of amyotrophic 
lateral sclerosis:
``(A) Specialized physician or nurse practitioner 
support.
``(B) Occupational therapy support.
``(C) Speech pathology support.
``(D) Physical therapy.
``(E) Dietary support.
``(F) Respiratory support.
``(G) Registered nurse support.
``(H) Coordination of the furnishing of durable 
medical equipment necessary for the management of the 
complex medical needs of a covered ALS individual.
``(2) Covered als individual.--The term `covered ALS 
individual' means an individual who is medically determined to 
have amyotrophic lateral sclerosis (as described in section 
226(h)).''.
(b) Payment for ALS-Related Services.--Section 1834 of the Social 
Security Act (42 U.S.C. 1395m) is amended by adding at the end the 
following new subsections:
``(aa) Payment for ALS-Related Services.--
``(1) 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 
(as defined in paragraph (6)) for ALS-related services (as 
defined in paragraph (1) of section 1861(nnn)) furnished to a 
covered ALS individual (as defined in paragraph (2) of such 
section) during a visit, in addition to any other payment that 
may be made for such services under this title.
``(2) Base payment amount.--
``(A) In general.--The amount of the single payment 
described in paragraph (1) for ALS-related services 
furnished during a year is equal to--
``(i) for 2027, $800;
``(ii) for 2028, $800 (or, if greater, the 
payment amount recommended by the Comptroller 
General of the United States in the report 
described in subparagraph (C)); and
``(iii) for 2029 and each subsequent year--
``(I) the amount for the preceding 
year, increased by the ALS services 
market basket percentage increase (as 
defined in clause (i) of subparagraph 
(B)) for such year; or
``(II) in the case such year is an 
applicable year (as defined in clause 
(ii) of such subparagraph), the payment 
amount recommended by the Comptroller 
General in the most recent report 
submitted under subparagraph (C), if 
greater than the amount that would be 
determined for such year under 
subclause (I).
``(B) Definitions.--In this paragraph:
``(i) ALS services market basket percentage 
increase.--The term `ALS services market basket 
percentage increase' means, for a year, the 
Secretary's estimate of the percentage increase 
in costs of an appropriate mix, as determined 
by the Secretary, of items and services that 
are ALS-related services over the preceding 
year.
``(ii) Applicable year.--The term 
`applicable year' means 2030 and every third 
year thereafter.
``(C) Report by the comptroller general.--
``(i) In general.--Not later than January 
1, 2027, and not later than January 1 of every 
third year thereafter, the Comptroller General 
of the United States shall, in consultation 
with qualified providers eligible for payment 
under this subsection, 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--
``(I) under this title for such a 
service based on per patient 
utilization data from whichever single 
year during the covered period (as 
defined in clause (ii)) with respect to 
such report has the highest per patient 
utilization of ALS-related services, 
even if such service is not payable for 
a particular covered 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 whichever 
single year during the covered period 
with respect to such report has the 
highest per patient utilization of ALS-
related services; and
``(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 Update Committee 
of the American Medical Association or 
the estimate of the Comptroller General 
for such a service.
``(ii) Definition of covered period.--In 
this subparagraph, the term `covered period' 
means--
``(I) with respect to the first 
report submitted under this 
subparagraph, 2022 through 2024;
``(II) with respect to the second 
such report, 2026 through 2028; and
``(III) with respect to the third 
report and each subsequent report, the 
period that begins 3 years after the 
covered period for the preceding 
report.
``(3) Payment adjustments.--The payment system under this 
subsection shall include a payment adjustment--
``(A) for each qualified provider that is 
participating in at least one clinical trial identified 
on the clinicaltrials.gov database (or any successor 
database) of the National Institutes of Health to 
account for the increased cost borne by such a 
qualified provider during such a clinical 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 Secretary--
``(i) payment under this subsection for 
such service or technology was not being made 
in the preceding year; and
``(ii) the cost of such service or 
technology is not insignificant in relation to 
the payment amount (as determined under this 
subsection) payable for ALS-related services.
``(4) Mechanism for payments.--For purposes 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 for payment which includes, with respect to a 
covered ALS individual, an alphanumeric code issued under the 
International Classification of Diseases, 10th Revision, 
Clinical Modification (`ICD-10-CM') and its subsequent 
revisions that is for the treatment of a diagnosis of 
amyotrophic lateral sclerosis.
``(5) No cost sharing.--Payment under this subsection shall 
be made only on an assignment-related basis without any cost 
sharing.
``(6) Qualified provider.--In this section, the term 
`qualified provider' means a provider of services that--
``(A) is capable of furnishing ALS-related 
services; and
``(B) meets requirements as the Secretary 
prescribes by regulation to implement subparagraph (A), 
in consultation with--
``(i) covered ALS individuals and their 
representatives;
``(ii) physicians who provide ALS-related 
services and their representatives; and
``(iii) professional and non-profit 
organizations with expertise in amyotrophic 
lateral sclerosis.
``(7) Implementation.--
``(A) In general.--Except as provided under 
subparagraph (B), the Secretary may implement the 
provisions of this subsection by program instruction or 
otherwise.
``(B) Rulemaking.--The Secretary shall implement 
paragraph (6), through notice and comment 
rulemaking.''.
(c) Conforming Amendments.--
(1) Section 1833(t).--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 defined in section 1861(nnn)(2)) that is 
otherwise payable to a qualified provider (as defined in 
section 1834(aa)(6)) pursuant to paragraph (4) shall be payable 
under such paragraph notwithstanding any payment made under 
section 1834(aa).''.
(2) Definition of arrangements.--Section 1861(w)(1) of the 
Social Security Act (42 U.S.C. 1395x(w)(1)) is amended by 
inserting ``qualified provider (as defined in section 
1834(aa)(6)) with respect to ALS-related services (as defined 
in subsection (nnn)),'' before ``or hospice program''.

SEC. 4. REPORT ON CHALLENGES WITH RESPECT TO THE ADMINISTRATION AND 
STAFFING OF AMYOTROPHIC LATERAL SCLEROSIS CLINICAL 
TRIALS.

Not later than 90 days after the date of the enactment of this Act, 
the Secretary of Health and Human Services, acting through the Director 
of the National Institute of Neurological Disorders and Stroke of the 
National 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 administration and 
staffing of clinical trials for the prevention, diagnosis, 
mitigation, treatment, or cure of amyotrophic lateral 
sclerosis;
(2) actions that the Director of the National Institute of 
Neurological Disorders and Stroke can take to address such 
challenges; and
(3) any legislative recommendations (including requests for 
appropriations) to further improve the administration of such 
clinical trials.
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