I 
118TH CONGRESS 
1ST SESSION H. R. 1672 
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 HOUSE OF REPRESENTATIVES 
MARCH 21, 2023 
Mr. DAVIS of Illinois (for himself and Mr. BURGESS) 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 establish 
a demonstration project to improve outpatient clinical 
care for 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. MEDICAID DEMONSTRATION PROJECT TO IMPROVE 
OUTPATIENT CLINICAL CARE FOR INDIVID-
UALS WITH SICKLE CELL DISEASE. 
Section 1903 of the Social Security Act (42 U.S.C. 
1396b) is amended by adding at the end the following new 
subsection: 
‘‘(cc) DEMONSTRATION PROJECT TO IMPROVE OUT-
PATIENT CLINICAL CARE FOR INDIVIDUALS WITH SICKLE 
CELL DISEASE.— 
‘‘(1) IN
GENERAL.—Notwithstanding section 
1902(a)(1) (relating to statewideness), section 
1902(a)(10)(B) (relating to comparability), and any 
other provision of this title for which the Secretary 
determines it is necessary to waive in order to imple-
ment this subsection, not later than the date that is 
1 year after the date of the enactment of this sub-
section, the Secretary shall, in consultation, as ap-
propriate, with the Administrator of the Health Re-
sources and Services Administration, the Director of 
the Agency for Healthcare Research and Quality, 
and the Deputy Assistant Secretary for Minority 
Health, conduct a 5-year demonstration project (re-
ferred to in this subsection as the ‘demonstration 
project’) for the purpose described in paragraph (2) 
under which the Secretary shall— 
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‘‘(A) for the first 18-month period of such 
project, award planning grants described in 
paragraph (3); and 
‘‘(B) for the remaining 42-month period of 
such project, provide payments to each State 
selected under paragraph (4) in accordance 
with paragraph (5). 
‘‘(2) PURPOSE.—The purpose described in this 
paragraph is for each State that participates in the 
demonstration project to improve access to high- 
quality outpatient care for individuals receiving serv-
ices under the State plan (or waiver of such plan) 
who are living with sickle cell disease (with a focus 
on, but not limited to, young adults and pregnant 
women), to improve clinical, mental health, ancillary, 
and support services, and to reduce overall and long- 
term costs, as appropriate, to the State associated 
with treating individuals with sickle cell disease 
under the State plan (or waiver of such plan) 
through the following activities: 
‘‘(A) Supporting the creation or augmenta-
tion of multi-disciplinary care teams that in-
clude the physicians needed to adequately treat 
an individual for sickle cell disease and its com-
plications, as determined by the Secretary in 
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consultation with the appropriate stakeholders, 
including organizations representing sickle cell 
disease patients, hematologists, and other spe-
cialists in sickle cell disease care and treatment. 
‘‘(B) Conducting an assessment of the bar-
riers to care experienced by individuals with 
sickle cell disease enrolled under the State plan 
(or waiver of such plan), taking into account so-
cial, demographic, and economic factors, geog-
raphy, provider shortages, and other issues con-
tributing to health inequities, as determined by 
the Secretary in consultation with relevant 
stakeholders, 
including 
organizations 
rep-
resenting sickle cell disease patients, hema-
tologists, and other specialists in sickle cell dis-
ease care and treatment. 
‘‘(C) Identifying best practices for improv-
ing health equity for individuals with sickle cell 
disease enrolled under the State plan (or waiver 
of such plan) which take into account the re-
sults of the assessment described in subpara-
graph (B), and communicating such best prac-
tices through the provision of education, train-
ing, and technical assistance to providers par-
ticipating under the State plan (or waiver of 
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such plan), including to care teams described in 
subparagraph (A). 
‘‘(D) Expanding expertise of providers par-
ticipating under the State plan (or waiver of 
such plan) on care for sickle cell disease by dis-
seminating clinical practice guidelines for sickle 
cell disease and providing education, training, 
and technical assistance with respect to such 
guidelines to such providers. 
‘‘(E) Ensuring that sickle cell disease pa-
tients enrolled under the State plan (or waiver 
of such plan) are getting primary and preven-
tive services in an appropriate outpatient set-
ting or through telehealth services, as appro-
priate, including by providing additional reim-
bursement for care coordinators, community 
health workers, and other non-traditional serv-
ice providers. 
‘‘(F) Developing an individualized, com-
prehensive, patient-centered care plan for indi-
viduals with sickle cell disease that accommo-
dates patient preferences in a culturally and lin-
guistically appropriate manner. 
‘‘(G) Ensuring that sickle cell disease pa-
tients enrolled under the State plan (or waiver 
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of such plan) are provided with coordination of, 
and access to, the following services, as deter-
mined to be clinically appropriate: 
‘‘(i) Treatments and medications, in-
cluding chronic and exchange transfusions 
and disease-modifying medications. 
‘‘(ii) Appropriate diagnostic testing 
such as magnetic resonance imaging. 
‘‘(iii) Pain management treatment 
and palliative care. 
‘‘(iv) Services provided by subspecial-
ists such as obstetricians and gyne-
cologists, reproductive health specialists, 
urologists, ophthalmologists, neurologists, 
nephrologists, psychologists, orthopedists, 
cardiologists, and pulmonologists. 
‘‘(v) Supportive clinical services, in-
cluding vision and dental care. 
‘‘(vi) Mental health services and sub-
stance use disorder treatment. 
‘‘(vii) Transportation to medical serv-
ices and social support services and refer-
rals to community-based organizations. 
‘‘(viii) Any other therapies approved 
by the Food and Drug Administration for 
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the treatment of sickle cell disease or its 
complications. 
‘‘(ix) Any other services deemed ap-
propriate for the treatment of sickle cell 
disease or its complications by the State. 
‘‘(H) Providing other services or taking 
other actions deemed necessary to improve 
treatment of sickle cell disease under the State 
plan (or waiver of such plan), as determined by 
the Secretary in coordination with relevant 
stakeholders, 
including 
organizations 
rep-
resenting sickle cell disease patients, hema-
tologists, and other specialists in sickle cell dis-
ease care and treatment. 
‘‘(3) PLANNING GRANTS.— 
‘‘(A) IN
GENERAL.—The Secretary shall 
award planning grants to at least 10 States se-
lected in accordance with subparagraph (B) for 
purposes of preparing an application described 
in paragraph (4)(C) and carrying out the activi-
ties described in subparagraph (C). 
‘‘(B) SELECTION.—In selecting States for 
purposes of this paragraph, the Secretary 
shall— 
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‘‘(i) select States that have a State 
plan approved under this title; 
‘‘(ii) give priority to States that have 
participated in the sickle cell disease sur-
veillance data collection program of the 
Centers for Disease Control and Preven-
tion or precursors to such program; and 
‘‘(iii) select States in a manner to rec-
ognize States with a higher prevalence of 
sickle cell disease patients that could be 
reached 
through 
this 
demonstration 
project. 
‘‘(C) ACTIVITIES
DESCRIBED.—Activities 
described in this subparagraph are, with respect 
to a State, each of the following: 
‘‘(i) Activities that support an assess-
ment of the treatment needs and gaps in 
care in the State for individuals with sickle 
cell disease in order to improve the net-
work of providers that treat this popu-
lation, including the following: 
‘‘(I) An estimate of the number 
of individuals enrolled under the State 
plan (or a waiver of such plan) who 
have sickle cell disease. 
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‘‘(II) Information on the capacity 
of providers with the knowledge need-
ed to treat sickle cell disease and the 
complications of sickle cell disease, in-
cluding information on providers who 
provide such services and their par-
ticipation under the State plan (or 
waiver of such plan). 
‘‘(III) Information on the gaps in 
care for treatment of individuals with 
sickle cell disease under the State 
plan (or waiver of such plan), includ-
ing information based on the assess-
ments described in subclauses (I) and 
(II). 
‘‘(ii) Activities that, taking into ac-
count the results of the assessment de-
scribed in clause (i), support the develop-
ment of State infrastructure to recruit pro-
spective providers and provide training and 
technical assistance to providers with re-
spect to treatment of sickle cell disease 
under the State plan (or a waiver of such 
plan). 
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‘‘(D) FUNDING.—For the purpose of mak-
ing grants under this paragraph, there is appro-
priated to the Secretary, out of any funds in 
the 
Treasury 
not 
otherwise 
appropriated, 
$25,000,000, to remain available until ex-
pended. 
‘‘(4) POST-PLANNING GRANT STATES.— 
‘‘(A) IN GENERAL.—The Secretary shall, 
with respect to the remaining 42-month period 
of the demonstration project conducted under 
paragraph (1), select up to 10, but not less 
than 5 States in accordance with subparagraph 
(B) for purposes of carrying out the activities 
described in paragraph (2) and receiving pay-
ments in accordance with paragraph (5). The 
Secretary may select all States that received a 
planning grant in paragraph (3). 
‘‘(B) SELECTION.—In selecting States for 
purposes of this paragraph, the Secretary 
shall— 
‘‘(i) select States that received a plan-
ning grant under paragraph (3) and have 
successfully completed the activities de-
scribed in subparagraph (C) of such para-
graph; 
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‘‘(ii) select States that submit to the 
Secretary an application in accordance 
with the requirements in subparagraph 
(C); and 
‘‘(iii) select States in a manner con-
sistent with reaching as many sickle cell 
disease patients as possible through the 
demonstration project. 
‘‘(C) APPLICATIONS.— 
‘‘(i) IN GENERAL.—A State seeking to 
be selected for purposes of this paragraph 
shall submit to the Secretary, at such time 
and in such form and manner as the Sec-
retary requires, an application that in-
cludes such information as the Secretary 
may require, in addition to the following: 
‘‘(I) A proposed process for car-
rying out the activities described in 
paragraph (2). 
‘‘(II) A review of reimbursement 
methodologies and other policies re-
lated to sickle cell disease treatment 
under the State plan (or waiver of 
such plan) that may create barriers to 
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increasing the number of providers de-
livering such services. 
‘‘(III) The development of a plan, 
taking into account activities carried 
out under paragraph (3)(C)(ii), that 
will result in long-term and sustain-
able provider networks under the 
State plan (or waiver of such plan) for 
sickle cell disease. 
‘‘(IV) A proposed process for re-
porting 
the 
information 
required 
under paragraph (6)(A). 
‘‘(V) The expected financial im-
pact of the demonstration project 
under this subsection on the State. 
‘‘(VI) A description of all funding 
sources available to the State to pro-
vide treatment for sickle cell disease 
under the State plan (or waiver of 
such plan) in the State. 
‘‘(VII) A preliminary plan for 
how the State will sustain any in-
crease in the capacity of providers to 
deliver treatment for sickle cell dis-
ease and the complications of sickle 
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cell disease resulting from the dem-
onstration project under this sub-
section after the termination of such 
demonstration project. 
‘‘(VIII) A description of how the 
State will coordinate the goals of the 
demonstration project with any waiver 
granted (or submitted by the State 
and pending) pursuant to section 
1115 for the delivery of services to 
treat sickle cell disease under the 
State plan, as applicable. 
‘‘(ii) CONSULTATION.—In completing 
an application under clause (i), a State 
shall consult with relevant stakeholders, in-
cluding Medicaid managed care plans, he-
matologists and other sickle cell disease 
specialists, and Medicaid beneficiaries and 
sickle cell disease advocates, and include in 
such application a description of such con-
sultation. 
‘‘(5) PAYMENTS.— 
‘‘(A) ENHANCED FMAP FOR SICKLE CELL 
DISEASE
TREATMENT.—Notwithstanding sec-
tion 1905(b), for each quarter occurring during 
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the period for which the demonstration project 
is conducted (after the first 18 months of such 
period), the Federal medical assistance percent-
age for each State selected under paragraph (4) 
with respect to amounts expended by the State 
for medical assistance for medically necessary 
services to treat sickle cell disease shall be equal 
to 100 percent. 
‘‘(B) CASE
MANAGEMENT
SERVICES
FOR 
SICKLE CELL DISEASE PATIENTS.— 
‘‘(i) IN GENERAL.—During the period 
for which the demonstration project is con-
ducted (after the first 18 months of such 
period), a State selected under paragraph 
(4) may provide a multi-disciplinary care 
team described in paragraph (2)(A) with 
payments for the provision of case manage-
ment and care coordination services to an 
individual with sickle cell disease who is el-
igible under the State plan (or waiver of 
such plan). Payments made to such a team 
shall be treated as medical assistance for 
purposes of section 1903(a) except that the 
Federal medical assistance percentage ap-
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plicable to such payments shall be equal to 
100 percent. 
‘‘(ii) METHODOLOGY.—A State that 
elects to make case management and care 
coordination payments to a multi-discipli-
nary care team under this subparagraph 
shall specify in a State’s application under 
paragraph (4) the methodology the State 
will use for determining payment for the 
provision of such services. Such method-
ology shall not be limited to a per-member- 
per-month basis and may provide (as pro-
posed by the State and subject to approval 
by the Secretary) for alternate models of 
payment. 
‘‘(6) REPORTS.— 
‘‘(A) STATE REPORTS.—A State receiving 
payments under paragraph (5) shall, for the pe-
riod of the demonstration project under this 
subsection, submit to the Secretary a quarterly 
report, with respect to expenditures for treat-
ment of sickle cell disease and complications of 
sickle cell disease for which payment is made to 
the State under this subsection, on the fol-
lowing: 
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‘‘(i) The specific activities with re-
spect to which payment under this sub-
section was provided. 
‘‘(ii) The number of individuals en-
rolled under the State plan (or a waiver of 
such plan) who received treatment for sick-
le cell disease or complications related to 
sickle cell disease under the demonstration 
project compared to the estimated number 
of such individuals who would have other-
wise received such services in the absence 
of such demonstration project. 
‘‘(iii) The number of individuals en-
rolled under the State plan (or waiver of 
such plan) who received treatment for sick-
le cell disease or complications related to 
sickle cell disease under the demonstration 
project who utilized the services beyond 
clinical sickle cell disease services, includ-
ing mental health, ancillary and support 
services and the impact on their health 
outcomes, including emergency department 
visits and inpatient hospital stays. 
‘‘(iv) The reductions in inpatient days, 
reductions in emergency department visits, 
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and reductions in the total cost of care 
compared to these metrics before the dem-
onstration project was implemented. 
‘‘(v) Other matters as determined by 
the Secretary. 
‘‘(B) CMS REPORTS.— 
‘‘(i) INITIAL REPORT.—Not later than 
18 months after the date of enactment of 
this subsection, the Administrator of the 
Centers for Medicare & Medicaid Services, 
in consultation with the Administrator of 
the Health Resources and Services Admin-
istration, shall submit to Congress an ini-
tial report on— 
‘‘(I) the States awarded planning 
grants under paragraph (3); 
‘‘(II) the criteria used in such se-
lection; and 
‘‘(III) the activities carried out 
by such States under such planning 
grants. 
‘‘(ii) INTERIM
REPORT.—Not later 
than 3 years after the date of enactment 
of this subsection, the Administrator of the 
Centers for Medicare & Medicaid Services 
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shall, submit to Congress an interim re-
port— 
‘‘(I) on activities carried out 
under 
the 
demonstration 
project 
under this subsection; 
‘‘(II) on the extent to which 
States selected under paragraph (4) 
have achieved the activities submitted 
in their applications under subpara-
graph (C) of such paragraph; 
‘‘(III) with a description of the 
strengths and limitations of such dem-
onstration project; and 
‘‘(IV) with a plan for the sustain-
ability of such project. 
‘‘(iii) FINAL REPORT.—Not later than 
1 year following the implementation of the 
demonstration project, the Secretary shall 
submit to Congress and make public a 
final report— 
‘‘(I) providing updates on the 
matters reported in the interim report 
under clause (ii); 
‘‘(II) including a description of 
any changes made with respect to the 
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demonstration project under this sub-
section after the submission of such 
interim report; and 
‘‘(III) 
evaluating 
such 
dem-
onstration project. 
‘‘(C) 
REPORT
ON
EXPERIENCES
OF 
STATES.—Not later than 3 years after the date 
of the enactment of this subsection, the Admin-
istrator of the Centers for Medicare & Medicaid 
Services, in consultation with the Director of 
the Agency for Healthcare Research and Qual-
ity, shall submit to Congress a summary on the 
experiences of States awarded planning grants 
under paragraph (3) and States selected under 
paragraph (4). 
‘‘(7) DATA SHARING AND BEST PRACTICES.— 
During the period of the demonstration project 
under this subsection, the Secretary shall, in collabo-
ration with States selected under paragraph (4), fa-
cilitate information sharing and the exchange of 
identified best practices between— 
‘‘(A) providers who treat sickle cell disease; 
and 
‘‘(B) States selected under paragraph (4) 
and States that were not so selected. 
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‘‘(8) CMS FUNDING.—There is appropriated, 
out of any funds in the Treasury not otherwise ap-
propriated, $50,000,000 to the Centers for Medicare 
& Medicaid Services for purposes of implementing 
this subsection, including completing the reports to 
Congress required under this Act. Such amount 
shall remain available until expended.’’. 
Æ 
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