119-hr5178

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

    (IH) ]

<DOC>

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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