I 
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 Geor-
gia, 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. THOMP-
SON 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, co-
ordinated care through a health home to individuals with 
sickle cell disease. 
Be it enacted by the Senate and House of Representa-
tives 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’’. 
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SEC. 2. ENABLING STATE MEDICAID PROGRAMS TO PRO-
VIDE CARE THROUGH HEALTH HOMES TO IN-
DIVIDUALS 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, begin-
ning 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 eli-
gible individuals with sickle cell disease (in this 
section referred to as a ‘sickle cell disease-fo-
cused State plan amendment’). 
‘‘(B) REQUIREMENT TO PROVIDE DENTAL 
AND VISION SERVICES.—In the case of a sickle 
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cell disease-focused State plan amendment ap-
proved by the Secretary on or after January 1, 
2026, a State shall ensure the provision of den-
tal and vision services to eligible individuals 
with sickle cell disease who are enrolled in such 
health home. Such requirement shall apply irre-
spective of existing requirements related to 
comparability or whether or not the State pro-
vides 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 amend-
ment 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 re-
covery of each such individual. 
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‘‘(II) The access of such individ-
uals 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 ex-
penditures on health care by such individ-
uals. 
‘‘(D) BEST
PRACTICES.—Not later than 
June 30, 2026, the Secretary shall make pub-
licly available on the website of the Centers for 
Medicare & Medicaid Services best practices for 
designing and implementing a sickle cell dis-
ease-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: 
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‘‘(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 Sec-
retary. 
‘‘(ii) SICKLE
CELL
DISEASE.—The 
term ‘sickle cell disease’ means an inher-
ited blood disorder affecting red blood cells 
that occurs when an individual has inher-
ited a sickle cell gene from each parent, as 
identified by a newborn screening or other 
genetic test.’’; and 
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(3) in subsection (h)(5), by inserting ‘‘or a 
health home for eligible individuals with sickle cell 
disease’’ after ‘‘chronic conditions’’. 
Æ 
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