[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[S. 5097 Introduced in Senate (IS)]
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118th CONGRESS
2d Session
S. 5097
To amend title XIX of the Social Security Act to establish a
demonstration project to improve outpatient clinical care for
individuals with sickle cell disease.
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
September 18, 2024
Mr. Booker (for himself, Mr. Scott of South Carolina, and Mr. Cassidy)
introduced the following bill; which was read twice and referred to the
Committee on Finance
_______________________________________________________________________
A BILL
To amend title XIX of the Social Security Act to establish a
demonstration project to improve outpatient clinical care for
individuals with sickle cell disease.
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 ``Sickle Cell Disease Comprehensive
Care Act''.
SEC. 2. ENABLING STATE MEDICAID PROGRAMS TO PROVIDE CARE THROUGH HEALTH
HOMES TO INDIVIDUALS WITH SICKLE CELL DISEASE.
Section 1945 of the Social Security Act (42 U.S.C. 1396w-4) is
amended--
(1) in subsection (a), by inserting ``(and, beginning
January 1, 2025, to eligible individuals with sickle cell
disease (as defined in subsection (c)(5)))'' after ``chronic
conditions'';
(2) in subsection (c)--
(A) in paragraph (1), by inserting ``and each
eligible individual with sickle cell disease'' after
``chronic conditions''; and
(B) by adding at the end the following new
paragraph:
``(5) Special rule relating to sickle cell disease health
homes.--
``(A) In general.--Beginning January 1, 2025, the
Secretary may approve a State plan amendment under this
section that is designed to provide health home
services primarily to eligible individuals with sickle
cell disease (in this section referred to as a `sickle
cell disease-focused State plan amendment').
``(B) Requirement to provide dental and vision
services.--In the case of a sickle cell disease-focused
State plan amendment approved by the Secretary on or
after January 1, 2025, a State shall ensure the
provision of dental and vision services to eligible
individuals with sickle cell disease who are enrolled
in such health home. Such requirement shall apply
irrespective of existing requirements related to
comparability or whether or not the State provides
dental or vision services to other Medicaid
beneficiaries.
``(C) Report requirements.--
``(i) In general.--In the case of a State
with a sickle cell disease-focused State plan
amendment, such State shall, at the end of the
first 8 fiscal year quarters that such State
plan amendment is in effect, submit to the
Secretary a report on the following, with
respect to eligible individuals with sickle
cell disease provided health home services
under such State plan amendment:
``(I) The quality of health care
provided to such individuals, with a
focus on outcomes relevant to the
recovery of each such individual.
``(II) The access of such
individuals to health care.
``(III) The total expenditures of
such individuals for health care.
``(ii) Applicable measures.--For purposes
of the report required under this subparagraph,
the Secretary shall specify all applicable
measures for determining quality of health care
provided to eligible individuals with sickle
cell disease, access to health care by such
individuals, and expenditures on health care by
such individuals.
``(D) Best practices.--Not later than June 30,
2025, the Secretary shall make publicly available on
the website of the Centers for Medicare & Medicaid
Services best practices for designing and implementing
a sickle cell disease-focused State plan amendment,
based on clinical practice guidelines for sickle cell
disease developed by medical specialty societies and in
consultation with sickle cell disease providers and
patient advocacy organizations.
``(E) Definitions.--For purposes of this section:
``(i) Eligible individual with sickle cell
disease.--The term `eligible individual with
sickle cell disease' means, with respect to a
State, an individual who satisfies all of the
following:
``(I) The individual is eligible
for medical assistance under the State
plan or under a waiver of such plan.
``(II) The individual has sickle
cell disease.
``(III) The individual may or may
not have previously received health
home services under any other State
plan amendment approved for the State
under this section by the Secretary.
``(ii) Sickle cell disease.--The term
`sickle cell disease' means an inherited blood
disorder affecting red blood cells that occurs
when an individual has inherited a sickle cell
gene from each parent, as identified by a
newborn screening or other genetic test.''; and
(3) in subsection (h)(5), by inserting ``or a health home
for eligible individuals with sickle cell disease'' after
``chronic conditions''.
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