I 

118TH CONGRESS 

2D SESSION H. R. 7432 

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 

FEBRUARY 23, 2024 

Mr. BURGESS (for himself and Mr. DAVIS of Illinois) 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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Sickle Cell Disease 

5 Comprehensive Care Act’’. 


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1 SEC. 2. ENABLING STATE MEDICAID PROGRAMS TO PRO2 VIDE CARE THROUGH HEALTH HOMES TO IN3 DIVIDUALS WITH SICKLE CELL DISEASE. 

4 Section 1945 of the Social Security Act (42 U.S.C. 

5 1396w–4) is amended— 

6 (1) in subsection (a), by inserting ‘‘(and, begin7 ning January 1, 2025, to eligible individuals with 

8 sickle cell disease (as described under subsection 

9 (c)(5)))’’ after ‘‘chronic conditions’’; and 

10 (2) in subsection (c)— 

11 (A) in paragraph (1), by inserting ‘‘and 

12 each eligible individual with sickle cell disease’’ 

13 after ‘‘chronic conditions’’; and 

14 (B) by adding at the end the following new 

15 paragraph: 

16 ‘‘(5) SPECIAL RULE RELATING TO SICKLE CELL

17 DISEASE HEALTH HOMES.— 

18 ‘‘(A) IN GENERAL.—Beginning January 1, 

19 2025, the Secretary may approve a State plan 

20 amendment under this section that is designed 

21 to provide health home services primarily to eli22 gible individuals with sickle cell disease (in this 

23 section referred to as a ‘sickle cell disease-fo24 cused State plan amendment’). 

25 ‘‘(B) REPORT REQUIREMENTS.—In the 

26 case of a State with a sickle cell disease-focused 


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1 State plan amendment, such State shall, at the 

2 end of the first 8 fiscal year quarters that such 

3 State plan amendment is in effect, submit to 

4 the Secretary a report on the following, with re5 spect to eligible individuals with sickle cell dis6 ease provided health home services under such 

7 State plan amendment: 

8 ‘‘(i) The quality of health care pro9 vided to such individuals, with a focus on 

10 outcomes relevant to the recovery of each 

11 such individual. 

12 ‘‘(ii) The access of such individuals to 

13 health care. 

14 ‘‘(iii) The total expenditures of such 

15 individuals for health care. 

16 For purposes of this subparagraph, the Sec17 retary shall specify all applicable measures for 

18 determining quality, access, and expenditures. 

19 ‘‘(C) BEST PRACTICES.—Not later than 

20 June 30, 2025, the Secretary shall make pub21 licly available on the internet website of the 

22 Centers for Medicare & Medicaid Services best 

23 practices for designing and implementing a 

24 sickle cell disease-focused State plan amend25 ment, based on clinical practice guidelines for 


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1 sickle cell diseases developed by medical spe2 cialty societies and in consultation with sickle 

3 cell disease providers and patient advocacy or4 ganizations. 

5 ‘‘(D) DEFINITIONS.—For purposes of this 

6 section: 

7 ‘‘(i) ELIGIBLE INDIVIDUAL WITH

8 SICKLE CELL DISEASE.—The term ‘eligible 

9 individual with sickle cell disease’ means, 

10 with respect to a State, an individual who 

11 satisfies all of the following: 

12 ‘‘(I) The individual is eligible for 

13 medical assistance under the State 

14 plan or under a waiver of such plan. 

15 ‘‘(II) The individual has sickle 

16 cell disease. 

17 ‘‘(III) The individual may or may 

18 not have previously received health 

19 home services under any other State 

20 plan amendment approved for the 

21 State under this section by the Sec22 retary. 

23 ‘‘(ii) SICKLE CELL DISEASE.—The 

24 term ‘sickle cell disease’ means an inher25 ited blood disorder affecting red blood cells 


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1 that occurs when an individual has inher2 ited a sickle cell gene from each parent, as 

3 identified by a newborn screening or other 

4 genetic test.’’; and 

5 (3) in subsection (h)— 

6 (A) in paragraph (4)(A)— 

7 (i) by striking the period at the end 

8 and inserting ‘‘; and’’; 

9 (ii) by striking ‘‘means comprehen10 sive’’ and inserting ‘‘means— 

11 ‘‘(i) with respect to eligible individuals 

12 with chronic conditions, comprehensive’’; 

13 and 

14 (iii) by adding at the end the fol15 lowing new clause: 

16 ‘‘(ii) in the case of a State that pro17 vides for dental services and vision services 

18 (as defined by such State), with respect to 

19 eligible individuals with sickle cell disease, 

20 the services described in clause (i), dental 

21 services, and vision services.’’; and 

22 (B) in paragraph (5), by inserting ‘‘or a 

23 health home for eligible individuals with sickle 

24 cell disease’’ after ‘‘chronic conditions’’. 

Æ 


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