[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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