II 

118TH CONGRESS 

1ST SESSION S. 996 

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 

MARCH 28, 2023 

Mr. BOOKER (for himself and Mr. SCOTT of South Carolina) 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. 

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. MEDICAID DEMONSTRATION PROJECT TO IMPROVE 

2 OUTPATIENT CLINICAL CARE FOR INDIVID3 UALS WITH SICKLE CELL DISEASE. 

4 Section 1903 of the Social Security Act (42 U.S.C. 

5 1396b) is amended by adding at the end the following new 

6 subsection: 

7 ‘‘(cc) DEMONSTRATION PROJECT TO IMPROVE OUT8 PATIENT CLINICAL CARE FOR INDIVIDUALS WITH SICKLE

9 CELL DISEASE.— 

10 ‘‘(1) IN GENERAL.—Notwithstanding section 

11 1902(a)(1) (relating to statewideness), section 

12 1902(a)(10)(B) (relating to comparability), and any 

13 other provision of this title for which the Secretary 

14 determines it is necessary to waive in order to imple15 ment this subsection, not later than the date that is 

16 1 year after the date of the enactment of this sub17 section, the Secretary shall, in consultation, as ap18 propriate, with the Administrator of the Health Re19 sources and Services Administration, the Director of 

20 the Agency for Healthcare Research and Quality, 

21 and the Deputy Assistant Secretary for Minority 

22 Health, conduct a 5-year demonstration project (re23 ferred to in this subsection as the ‘demonstration 

24 project’) for the purpose described in paragraph (2) 

25 under which the Secretary shall— 


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1 ‘‘(A) for the first 18-month period of such 

2 project, award planning grants described in 

3 paragraph (3); and 

4 ‘‘(B) for the remaining 42-month period of 

5 such project, provide payments to each State 

6 selected under paragraph (4) in accordance 

7 with paragraph (5). 

8 ‘‘(2) PURPOSE.—The purpose described in this 

9 paragraph is for each State that participates in the 

10 demonstration project to improve access to high11 quality outpatient care for individuals receiving serv12 ices under the State plan (or waiver of such plan) 

13 who are living with sickle cell disease (with a focus 

14 on, but not limited to, young adults and pregnant 

15 women), to improve clinical, mental health, ancillary, 

16 and support services, and to reduce overall and long17 term costs, as appropriate, to the State associated 

18 with treating individuals with sickle cell disease 

19 under the State plan (or waiver of such plan) 

20 through the following activities: 

21 ‘‘(A) Supporting the creation or augmenta22 tion of multi-disciplinary care teams that in23 clude the physicians needed to adequately treat 

24 an individual for sickle cell disease and its com25 plications, as determined by the Secretary in 


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1 consultation with the appropriate stakeholders, 

2 including organizations representing sickle cell 

3 disease patients, hematologists, and other spe4 cialists in sickle cell disease care and treatment. 

5 ‘‘(B) Conducting an assessment of the bar6 riers to care experienced by individuals with 

7 sickle cell disease enrolled under the State plan 

8 (or waiver of such plan), taking into account so9 cial, demographic, and economic factors, geog10 raphy, provider shortages, and other issues con11 tributing to health inequities, as determined by 

12 the Secretary in consultation with relevant 

13 stakeholders, including organizations rep14 resenting sickle cell disease patients, hema15 tologists, and other specialists in sickle cell dis16 ease care and treatment. 

17 ‘‘(C) Identifying best practices for improv18 ing health equity for individuals with sickle cell 

19 disease enrolled under the State plan (or waiver 

20 of such plan) which take into account the re21 sults of the assessment described in subpara22 graph (B), and communicating such best prac23 tices through the provision of education, train24 ing, and technical assistance to providers par25 ticipating under the State plan (or waiver of 


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1 such plan), including to care teams described in 

2 subparagraph (A). 

3 ‘‘(D) Expanding expertise of providers par4 ticipating under the State plan (or waiver of 

5 such plan) on care for sickle cell disease by dis6 seminating clinical practice guidelines for sickle 

7 cell disease and providing education, training, 

8 and technical assistance with respect to such 

9 guidelines to such providers. 

10 ‘‘(E) Ensuring that sickle cell disease pa11 tients enrolled under the State plan (or waiver 

12 of such plan) are getting primary and preven13 tive services in an appropriate outpatient set14 ting or through telehealth services, as appro15 priate, including by providing additional reim16 bursement for care coordinators, community 

17 health workers, and other non-traditional serv18 ice providers. 

19 ‘‘(F) Developing an individualized, com20 prehensive, patient-centered care plan for indi21 viduals with sickle cell disease that accommo22 dates patient preferences in a culturally and lin23 guistically appropriate manner. 

24 ‘‘(G) Ensuring that sickle cell disease pa25 tients enrolled under the State plan (or waiver 


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1 of such plan) are provided with coordination of, 

2 and access to, the following services, as deter3 mined to be clinically appropriate: 

4 ‘‘(i) Treatments and medications, in5 cluding chronic and exchange transfusions 

6 and disease-modifying medications. 

7 ‘‘(ii) Appropriate diagnostic testing 

8 such as magnetic resonance imaging. 

9 ‘‘(iii) Pain management treatment 

10 and palliative care. 

11 ‘‘(iv) Services provided by subspecial12 ists such as obstetricians and gyne13 cologists, reproductive health specialists, 

14 urologists, ophthalmologists, neurologists, 

15 nephrologists, psychologists, orthopedists, 

16 cardiologists, and pulmonologists. 

17 ‘‘(v) Supportive clinical services, in18 cluding vision and dental care. 

19 ‘‘(vi) Mental health services and sub20 stance use disorder treatment. 

21 ‘‘(vii) Transportation to medical serv22 ices and social support services and refer23 rals to community-based organizations. 

24 ‘‘(viii) Any other therapies approved 

25 by the Food and Drug Administration for 


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1 the treatment of sickle cell disease or its 

2 complications. 

3 ‘‘(ix) Any other services deemed ap4 propriate for the treatment of sickle cell 

5 disease or its complications by the State. 

6 ‘‘(H) Providing other services or taking 

7 other actions deemed necessary to improve 

8 treatment of sickle cell disease under the State 

9 plan (or waiver of such plan), as determined by 

10 the Secretary in coordination with relevant 

11 stakeholders, including organizations rep12 resenting sickle cell disease patients, hema13 tologists, and other specialists in sickle cell dis14 ease care and treatment. 

15 ‘‘(3) PLANNING GRANTS.— 

16 ‘‘(A) IN GENERAL.—The Secretary shall 

17 award planning grants to at least 10 States se18 lected in accordance with subparagraph (B) for 

19 purposes of preparing an application described 

20 in paragraph (4)(C) and carrying out the activi21 ties described in subparagraph (C). 

22 ‘‘(B) SELECTION.—In selecting States for 

23 purposes of this paragraph, the Secretary 

24 shall— 


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1 ‘‘(i) select States that have a State 

2 plan approved under this title; 

3 ‘‘(ii) give priority to States that have 

4 participated in the sickle cell disease sur5 veillance data collection program of the 

6 Centers for Disease Control and Preven7 tion or precursors to such program; and 

8 ‘‘(iii) select States in a manner to rec9 ognize States with a higher prevalence of 

10 sickle cell disease patients that could be 

11 reached through this demonstration 

12 project. 

13 ‘‘(C) ACTIVITIES DESCRIBED.—Activities 

14 described in this subparagraph are, with respect 

15 to a State, each of the following: 

16 ‘‘(i) Activities that support an assess17 ment of the treatment needs and gaps in 

18 care in the State for individuals with sickle 

19 cell disease in order to improve the net20 work of providers that treat this popu21 lation, including the following: 

22 ‘‘(I) An estimate of the number 

23 of individuals enrolled under the State 

24 plan (or a waiver of such plan) who 

25 have sickle cell disease. 


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1 ‘‘(II) Information on the capacity 

2 of providers with the knowledge need3 ed to treat sickle cell disease and the 

4 complications of sickle cell disease, in5 cluding information on providers who 

6 provide such services and their par7 ticipation under the State plan (or 

8 waiver of such plan). 

9 ‘‘(III) Information on the gaps in 

10 care for treatment of individuals with 

11 sickle cell disease under the State 

12 plan (or waiver of such plan), includ13 ing information based on the assess14 ments described in subclauses (I) and 

15 (II). 

16 ‘‘(ii) Activities that, taking into ac17 count the results of the assessment de18 scribed in clause (i), support the develop19 ment of State infrastructure to recruit pro20 spective providers and provide training and 

21 technical assistance to providers with re22 spect to treatment of sickle cell disease 

23 under the State plan (or a waiver of such 

24 plan). 


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1 ‘‘(D) FUNDING.—For the purpose of mak2 ing grants under this paragraph, there is appro3 priated to the Secretary, out of any funds in 

4 the Treasury not otherwise appropriated, 

5 $25,000,000, to remain available until ex6 pended. 

7 ‘‘(4) POST-PLANNING GRANT STATES.— 

8 ‘‘(A) IN GENERAL.—The Secretary shall, 

9 with respect to the remaining 42-month period 

10 of the demonstration project conducted under 

11 paragraph (1), select up to 10, but not less 

12 than 5 States in accordance with subparagraph 

13 (B) for purposes of carrying out the activities 

14 described in paragraph (2) and receiving pay15 ments in accordance with paragraph (5). The 

16 Secretary may select all States that received a 

17 planning grant in paragraph (3). 

18 ‘‘(B) SELECTION.—In selecting States for 

19 purposes of this paragraph, the Secretary 

20 shall— 

21 ‘‘(i) select States that received a plan22 ning grant under paragraph (3) and have 

23 successfully completed the activities de24 scribed in subparagraph (C) of such para25 graph; 


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1 ‘‘(ii) select States that submit to the 

2 Secretary an application in accordance 

3 with the requirements in subparagraph 

4 (C); and 

5 ‘‘(iii) select States in a manner con6 sistent with reaching as many sickle cell 

7 disease patients as possible through the 

8 demonstration project. 

9 ‘‘(C) APPLICATIONS.— 

10 ‘‘(i) IN GENERAL.—A State seeking to 

11 be selected for purposes of this paragraph 

12 shall submit to the Secretary, at such time 

13 and in such form and manner as the Sec14 retary requires, an application that in15 cludes such information as the Secretary 

16 may require, in addition to the following: 

17 ‘‘(I) A proposed process for car18 rying out the activities described in 

19 paragraph (2). 

20 ‘‘(II) A review of reimbursement 

21 methodologies and other policies re22 lated to sickle cell disease treatment 

23 under the State plan (or waiver of 

24 such plan) that may create barriers to 


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1 increasing the number of providers de2 livering such services. 

3 ‘‘(III) The development of a plan, 

4 taking into account activities carried 

5 out under paragraph (3)(C)(ii), that 

6 will result in long-term and sustain7 able provider networks under the 

8 State plan (or waiver of such plan) for 

9 sickle cell disease. 

10 ‘‘(IV) A proposed process for re11 porting the information required 

12 under paragraph (6)(A). 

13 ‘‘(V) The expected financial im14 pact of the demonstration project 

15 under this subsection on the State. 

16 ‘‘(VI) A description of all funding 

17 sources available to the State to pro18 vide treatment for sickle cell disease 

19 under the State plan (or waiver of 

20 such plan) in the State. 

21 ‘‘(VII) A preliminary plan for 

22 how the State will sustain any in23 crease in the capacity of providers to 

24 deliver treatment for sickle cell dis25 ease and the complications of sickle 


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1 cell disease resulting from the dem2 onstration project under this sub3 section after the termination of such 

4 demonstration project. 

5 ‘‘(VIII) A description of how the 

6 State will coordinate the goals of the 

7 demonstration project with any waiver 

8 granted (or submitted by the State 

9 and pending) pursuant to section 

10 1115 for the delivery of services to 

11 treat sickle cell disease under the 

12 State plan, as applicable. 

13 ‘‘(ii) CONSULTATION.—In completing 

14 an application under clause (i), a State 

15 shall consult with relevant stakeholders, in16 cluding Medicaid managed care plans, he17 matologists and other sickle cell disease 

18 specialists, and Medicaid beneficiaries and 

19 sickle cell disease advocates, and include in 

20 such application a description of such con21 sultation. 

22 ‘‘(5) PAYMENTS.— 

23 ‘‘(A) ENHANCED FMAP FOR SICKLE CELL

24 DISEASE TREATMENT.—Notwithstanding sec25 tion 1905(b), for each quarter occurring during 


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1 the period for which the demonstration project 

2 is conducted (after the first 18 months of such 

3 period), the Federal medical assistance percent4 age for each State selected under paragraph (4) 

5 with respect to amounts expended by the State 

6 for medical assistance for medically necessary 

7 services to treat sickle cell disease shall be equal 

8 to 100 percent. 

9 ‘‘(B) CASE MANAGEMENT SERVICES FOR

10 SICKLE CELL DISEASE PATIENTS.— 

11 ‘‘(i) IN GENERAL.—During the period 

12 for which the demonstration project is con13 ducted (after the first 18 months of such 

14 period), a State selected under paragraph 

15 (4) may provide a multi-disciplinary care 

16 team described in paragraph (2)(A) with 

17 payments for the provision of case manage18 ment and care coordination services to an 

19 individual with sickle cell disease who is el20 igible under the State plan (or waiver of 

21 such plan). Payments made to such a team 

22 shall be treated as medical assistance for 

23 purposes of section 1903(a) except that the 

24 Federal medical assistance percentage apVerDate Sep 11 2014 02:29 Apr 07, 2023 Jkt 039200 PO 00000 Frm 00014 Fmt 6652 Sfmt 6201 E:\BILLS\S996.IS S996

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1 plicable to such payments shall be equal to 

2 100 percent. 

3 ‘‘(ii) METHODOLOGY.—A State that 

4 elects to make case management and care 

5 coordination payments to a multi-discipli6 nary care team under this subparagraph 

7 shall specify in a State’s application under 

8 paragraph (4) the methodology the State 

9 will use for determining payment for the 

10 provision of such services. Such method11 ology shall not be limited to a per-member12 per-month basis and may provide (as pro13 posed by the State and subject to approval 

14 by the Secretary) for alternate models of 

15 payment. 

16 ‘‘(6) REPORTS.— 

17 ‘‘(A) STATE REPORTS.—A State receiving 

18 payments under paragraph (5) shall, for the pe19 riod of the demonstration project under this 

20 subsection, submit to the Secretary a quarterly 

21 report, with respect to expenditures for treat22 ment of sickle cell disease and complications of 

23 sickle cell disease for which payment is made to 

24 the State under this subsection, on the fol25 lowing: 


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1 ‘‘(i) The specific activities with re2 spect to which payment under this sub3 section was provided. 

4 ‘‘(ii) The number of individuals en5 rolled under the State plan (or a waiver of 

6 such plan) who received treatment for sick7 le cell disease or complications related to 

8 sickle cell disease under the demonstration 

9 project compared to the estimated number 

10 of such individuals who would have other11 wise received such services in the absence 

12 of such demonstration project. 

13 ‘‘(iii) The number of individuals en14 rolled under the State plan (or waiver of 

15 such plan) who received treatment for sick16 le cell disease or complications related to 

17 sickle cell disease under the demonstration 

18 project who utilized the services beyond 

19 clinical sickle cell disease services, includ20 ing mental health, ancillary and support 

21 services and the impact on their health 

22 outcomes, including emergency department 

23 visits and inpatient hospital stays. 

24 ‘‘(iv) The reductions in inpatient days, 

25 reductions in emergency department visits, 


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1 and reductions in the total cost of care 

2 compared to these metrics before the dem3 onstration project was implemented. 

4 ‘‘(v) Other matters as determined by 

5 the Secretary. 

6 ‘‘(B) CMS REPORTS.— 

7 ‘‘(i) INITIAL REPORT.—Not later than 

8 24 months after the date of enactment of 

9 this subsection, the Administrator of the 

10 Centers for Medicare & Medicaid Services, 

11 in consultation with the Administrator of 

12 the Health Resources and Services Admin13 istration, shall submit to Congress an ini14 tial report on— 

15 ‘‘(I) the States awarded planning 

16 grants under paragraph (3); 

17 ‘‘(II) the criteria used in such se18 lection; and 

19 ‘‘(III) the activities carried out 

20 by such States under such planning 

21 grants. 

22 ‘‘(ii) INTERIM REPORT.—Not later 

23 than 3 years after the date of enactment 

24 of this subsection, the Administrator of the 

25 Centers for Medicare & Medicaid Services 


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1 shall, submit to Congress an interim re2 port— 

3 ‘‘(I) on activities carried out 

4 under the demonstration project 

5 under this subsection; 

6 ‘‘(II) on the extent to which 

7 States selected under paragraph (4) 

8 have achieved the activities submitted 

9 in their applications under subpara10 graph (C) of such paragraph; 

11 ‘‘(III) with a description of the 

12 strengths and limitations of such dem13 onstration project; and 

14 ‘‘(IV) with a plan for the sustain15 ability of such project. 

16 ‘‘(iii) FINAL REPORT.—Not later than 

17 18 months following the implementation of 

18 the demonstration project, the Secretary 

19 shall submit to Congress and make public 

20 a final report— 

21 ‘‘(I) providing updates on the 

22 matters reported in the interim report 

23 under clause (ii); 

24 ‘‘(II) including a description of 

25 any changes made with respect to the 


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1 demonstration project under this sub2 section after the submission of such 

3 interim report; and 

4 ‘‘(III) evaluating such dem5 onstration project. 

6 ‘‘(C) REPORT ON EXPERIENCES OF

7 STATES.—Not later than 4 years after the date 

8 of the enactment of this subsection, the Admin9 istrator of the Centers for Medicare & Medicaid 

10 Services, in consultation with the Director of 

11 the Agency for Healthcare Research and Qual12 ity, shall submit to Congress a summary on the 

13 experiences of States awarded planning grants 

14 under paragraph (3) and States selected under 

15 paragraph (4). 

16 ‘‘(7) DATA SHARING AND BEST PRACTICES.— 

17 During the period of the demonstration project 

18 under this subsection, the Secretary shall, in collabo19 ration with States selected under paragraph (4), fa20 cilitate information sharing and the exchange of 

21 identified best practices between— 

22 ‘‘(A) providers who treat sickle cell disease; 

23 and 

24 ‘‘(B) States selected under paragraph (4) 

25 and States that were not so selected. 


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1 ‘‘(8) CMS FUNDING.—There is appropriated, 

2 out of any funds in the Treasury not otherwise ap3 propriated, $50,000,000 to the Centers for Medicare 

4 & Medicaid Services for purposes of implementing 

5 this subsection, including completing the reports to 

6 Congress required under this Act. Such amount 

7 shall remain available until expended.’’. 

Æ 


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