Sickle Cell Disease Comprehensive Care Act

[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H.R. 5178 Introduced in House (IH)]

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119th CONGRESS
  1st Session
                                H. R. 5178

To amend title XIX of the Social Security Act to enable State Medicaid
 programs to provide comprehensive, coordinated care through a health
             home to individuals with sickle cell disease.

_______________________________________________________________________

                    IN THE HOUSE OF REPRESENTATIVES

                           September 8, 2025

Mr. Dunn of Florida (for himself, Mr. Davis of Illinois, Mr. Carter of
Georgia, Mr. Figures, Mr. Bilirakis, Ms. Johnson of Texas, Ms. Norton,
Mrs. McIver, Mr. Fields, Mr. Green of Texas, Mr. Gottheimer, Ms. Tlaib,
  Mr. Johnson of Georgia, Mr. Jackson of Illinois, Mr. Davis of North
    Carolina, Mr. Soto, Ms. Budzinski, Ms. Sewell, Mr. Thompson of
Mississippi, and Mr. Moulton) introduced the following bill; which was
            referred to the Committee on Energy and Commerce

_______________________________________________________________________

                                 A BILL

To amend title XIX of the Social Security Act to enable State Medicaid
 programs to provide comprehensive, coordinated care through a health
             home to 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, 2026, 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, 2026, 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, 2026, 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, not later than the
                        last day of the 8th fiscal year quarter 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,
                2026, 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 of such State 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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