What This Bill Does
This bill creates a 5-year federal test program to improve outpatient medical care for people with sickle cell disease who receive Medicaid benefits. States selected to participate will test new ways to deliver high-quality care, coordinate services and reduce costs for this patient population.
Who It Affects
- People with sickle cell disease enrolled in Medicaid (state health insurance for low-income individuals)
- State Medicaid agencies
- Medical doctors and healthcare providers who treat sickle cell disease
- The federal Centers for Medicare and Medicaid Services
- Sickle cell disease patient advocacy organizations
Key Provisions
- The federal government will award planning grants to at least 10 states during the first 18 months to help them prepare for the program. States will assess their patient numbers, provider capacity and gaps in care for people with sickle cell disease. (Sec. 2(3))
- After the planning period, the federal government will select 5 to 10 states to carry out the full demonstration project activities for the remaining 42 months, which include creating multi-disciplinary care teams, identifying best practices and developing patient-centered care plans. (Sec. 2(4))
- The federal government will pay 100 percent of costs for medical services to treat sickle cell disease in selected states, plus 100 percent of case management and care coordination services provided by multi-disciplinary care teams. (Sec. 2(5))
- Selected states must submit quarterly reports on program activities, the number of patients served, emergency department visits, hospital stays and total costs. (Sec. 2(6))
- The Secretary of Health and Human Services must submit reports to Congress at 24 months, 3 years and 18 months after the program ends describing activities, achievements and evaluation results. (Sec. 2(6))
What Changes
If passed, the bill authorizes a new federal test program for Medicaid sickle cell disease care. States can apply for planning grants to assess their healthcare systems and develop improvement plans. Selected states will then receive full federal funding for expanded services including specialized physician teams, mental health services, pain management, specialist referrals, transportation assistance and medications. The federal government will pay the entire cost instead of sharing costs with states as it normally does.
Important Definitions
- **Sickle cell disease**: A genetic blood disorder affecting how red blood cells function (explicitly referenced throughout but not formally defined in the bill text)
- **Multi-disciplinary care team**: Physicians needed to adequately treat a person for sickle cell disease and its complications, as determined by the Secretary in consultation with stakeholders (Sec. 2(2)(A))
- **Demonstration project**: A 5-year test program to improve outpatient care for individuals with sickle cell disease (Sec. 2(1))
- **State plan**: A state's Medicaid program or an approved waiver of that program (referenced throughout)
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.
Be it enacted by the Senate and House of Representa-
1
tives of the United States of America in Congress assembled,
2
SECTION 1. SHORT TITLE.
3
This Act may be cited as the ‘‘Sickle Cell Disease
4
Comprehensive Care Act’’.
5
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•S 996 IS
SEC. 2. MEDICAID DEMONSTRATION PROJECT TO IMPROVE
1
OUTPATIENT CLINICAL CARE FOR INDIVID-
2
UALS WITH SICKLE CELL DISEASE.
3
Section 1903 of the Social Security Act (42 U.S.C.
4
1396b) is amended by adding at the end the following new
5
subsection:
6
‘‘(cc) DEMONSTRATION PROJECT TO IMPROVE OUT-
7
PATIENT CLINICAL CARE FOR INDIVIDUALS WITH SICKLE
8
CELL DISEASE.—
9
‘‘(1) IN
GENERAL.—Notwithstanding section
10
1902(a)(1) (relating to statewideness), section
11
1902(a)(10)(B) (relating to comparability), and any
12
other provision of this title for which the Secretary
13
determines it is necessary to waive in order to imple-
14
ment this subsection, not later than the date that is
15
1 year after the date of the enactment of this sub-
16
section, the Secretary shall, in consultation, as ap-
17
propriate, with the Administrator of the Health Re-
18
sources and Services Administration, the Director of
19
the Agency for Healthcare Research and Quality,
20
and the Deputy Assistant Secretary for Minority
21
Health, conduct a 5-year demonstration project (re-
22
ferred to in this subsection as the ‘demonstration
23
project’) for the purpose described in paragraph (2)
24
under which the Secretary shall—
25
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‘‘(A) for the first 18-month period of such
1
project, award planning grants described in
2
paragraph (3); and
3
‘‘(B) for the remaining 42-month period of
4
such project, provide payments to each State
5
selected under paragraph (4) in accordance
6
with paragraph (5).
7
‘‘(2) PURPOSE.—The purpose described in this
8
paragraph is for each State that participates in the
9
demonstration project to improve access to high-
10
quality outpatient care for individuals receiving serv-
11
ices under the State plan (or waiver of such plan)
12
who are living with sickle cell disease (with a focus
13
on, but not limited to, young adults and pregnant
14
women), to improve clinical, mental health, ancillary,
15
and support services, and to reduce overall and long-
16
term costs, as appropriate, to the State associated
17
with treating individuals with sickle cell disease
18
under the State plan (or waiver of such plan)
19
through the following activities:
20
‘‘(A) Supporting the creation or augmenta-
21
tion of multi-disciplinary care teams that in-
22
clude the physicians needed to adequately treat
23
an individual for sickle cell disease and its com-
24
plications, as determined by the Secretary in
25
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•S 996 IS
consultation with the appropriate stakeholders,
1
including organizations representing sickle cell
2
disease patients, hematologists, and other spe-
3
cialists in sickle cell disease care and treatment.
4
‘‘(B) Conducting an assessment of the bar-
5
riers to care experienced by individuals with
6
sickle cell disease enrolled under the State plan
7
(or waiver of such plan), taking into account so-
8
cial, demographic, and economic factors, geog-
9
raphy, provider shortages, and other issues con-
10
tributing to health inequities, as determined by
11
the Secretary in consultation with relevant
12
stakeholders,
including
organizations
rep-
13
resenting sickle cell disease patients, hema-
14
tologists, and other specialists in sickle cell dis-
15
ease care and treatment.
16
‘‘(C) Identifying best practices for improv-
17
ing health equity for individuals with sickle cell
18
disease enrolled under the State plan (or waiver
19
of such plan) which take into account the re-
20
sults of the assessment described in subpara-
21
graph (B), and communicating such best prac-
22
tices through the provision of education, train-
23
ing, and technical assistance to providers par-
24
ticipating under the State plan (or waiver of
25
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•S 996 IS
such plan), including to care teams described in
1
subparagraph (A).
2
‘‘(D) Expanding expertise of providers par-
3
ticipating under the State plan (or waiver of
4
such plan) on care for sickle cell disease by dis-
5
seminating clinical practice guidelines for sickle
6
cell disease and providing education, training,
7
and technical assistance with respect to such
8
guidelines to such providers.
9
‘‘(E) Ensuring that sickle cell disease pa-
10
tients enrolled under the State plan (or waiver
11
of such plan) are getting primary and preven-
12
tive services in an appropriate outpatient set-
13
ting or through telehealth services, as appro-
14
priate, including by providing additional reim-
15
bursement for care coordinators, community
16
health workers, and other non-traditional serv-
17
ice providers.
18
‘‘(F) Developing an individualized, com-
19
prehensive, patient-centered care plan for indi-
20
viduals with sickle cell disease that accommo-
21
dates patient preferences in a culturally and lin-
22
guistically appropriate manner.
23
‘‘(G) Ensuring that sickle cell disease pa-
24
tients enrolled under the State plan (or waiver
25
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•S 996 IS
of such plan) are provided with coordination of,
1
and access to, the following services, as deter-
2
mined to be clinically appropriate:
3
‘‘(i) Treatments and medications, in-
4
cluding chronic and exchange transfusions
5
and disease-modifying medications.
6
‘‘(ii) Appropriate diagnostic testing
7
such as magnetic resonance imaging.
8
‘‘(iii) Pain management treatment
9
and palliative care.
10
‘‘(iv) Services provided by subspecial-
11
ists such as obstetricians and gyne-
12
cologists, reproductive health specialists,
13
urologists, ophthalmologists, neurologists,
14
nephrologists, psychologists, orthopedists,
15
cardiologists, and pulmonologists.
16
‘‘(v) Supportive clinical services, in-
17
cluding vision and dental care.
18
‘‘(vi) Mental health services and sub-
19
stance use disorder treatment.
20
‘‘(vii) Transportation to medical serv-
21
ices and social support services and refer-
22
rals to community-based organizations.
23
‘‘(viii) Any other therapies approved
24
by the Food and Drug Administration for
25
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the treatment of sickle cell disease or its
1
complications.
2
‘‘(ix) Any other services deemed ap-
3
propriate for the treatment of sickle cell
4
disease or its complications by the State.
5
‘‘(H) Providing other services or taking
6
other actions deemed necessary to improve
7
treatment of sickle cell disease under the State
8
plan (or waiver of such plan), as determined by
9
the Secretary in coordination with relevant
10
stakeholders,
including
organizations
rep-
11
resenting sickle cell disease patients, hema-
12
tologists, and other specialists in sickle cell dis-
13
ease care and treatment.
14
‘‘(3) PLANNING GRANTS.—
15
‘‘(A) IN
GENERAL.—The Secretary shall
16
award planning grants to at least 10 States se-
17
lected in accordance with subparagraph (B) for
18
purposes of preparing an application described
19
in paragraph (4)(C) and carrying out the activi-
20
ties described in subparagraph (C).
21
‘‘(B) SELECTION.—In selecting States for
22
purposes of this paragraph, the Secretary
23
shall—
24
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•S 996 IS
‘‘(i) select States that have a State
1
plan approved under this title;
2
‘‘(ii) give priority to States that have
3
participated in the sickle cell disease sur-
4
veillance data collection program of the
5
Centers for Disease Control and Preven-
6
tion or precursors to such program; and
7
‘‘(iii) select States in a manner to rec-
8
ognize States with a higher prevalence of
9
sickle cell disease patients that could be
10
reached
through
this
demonstration
11
project.
12
‘‘(C) ACTIVITIES
DESCRIBED.—Activities
13
described in this subparagraph are, with respect
14
to a State, each of the following:
15
‘‘(i) Activities that support an assess-
16
ment of the treatment needs and gaps in
17
care in the State for individuals with sickle
18
cell disease in order to improve the net-
19
work of providers that treat this popu-
20
lation, including the following:
21
‘‘(I) An estimate of the number
22
of individuals enrolled under the State
23
plan (or a waiver of such plan) who
24
have sickle cell disease.
25
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•S 996 IS
‘‘(II) Information on the capacity
1
of providers with the knowledge need-
2
ed to treat sickle cell disease and the
3
complications of sickle cell disease, in-
4
cluding information on providers who
5
provide such services and their par-
6
ticipation under the State plan (or
7
waiver of such plan).
8
‘‘(III) Information on the gaps in
9
care for treatment of individuals with
10
sickle cell disease under the State
11
plan (or waiver of such plan), includ-
12
ing information based on the assess-
13
ments described in subclauses (I) and
14
(II).
15
‘‘(ii) Activities that, taking into ac-
16
count the results of the assessment de-
17
scribed in clause (i), support the develop-
18
ment of State infrastructure to recruit pro-
19
spective providers and provide training and
20
technical assistance to providers with re-
21
spect to treatment of sickle cell disease
22
under the State plan (or a waiver of such
23
plan).
24
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•S 996 IS
‘‘(D) FUNDING.—For the purpose of mak-
1
ing grants under this paragraph, there is appro-
2
priated to the Secretary, out of any funds in
3
the
Treasury
not
otherwise
appropriated,
4
$25,000,000, to remain available until ex-
5
pended.
6
‘‘(4) POST-PLANNING GRANT STATES.—
7
‘‘(A) IN GENERAL.—The Secretary shall,
8
with respect to the remaining 42-month period
9
of the demonstration project conducted under
10
paragraph (1), select up to 10, but not less
11
than 5 States in accordance with subparagraph
12
(B) for purposes of carrying out the activities
13
described in paragraph (2) and receiving pay-
14
ments in accordance with paragraph (5). The
15
Secretary may select all States that received a
16
planning grant in paragraph (3).
17
‘‘(B) SELECTION.—In selecting States for
18
purposes of this paragraph, the Secretary
19
shall—
20
‘‘(i) select States that received a plan-
21
ning grant under paragraph (3) and have
22
successfully completed the activities de-
23
scribed in subparagraph (C) of such para-
24
graph;
25
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•S 996 IS
‘‘(ii) select States that submit to the
1
Secretary an application in accordance
2
with the requirements in subparagraph
3
(C); and
4
‘‘(iii) select States in a manner con-
5
sistent with reaching as many sickle cell
6
disease patients as possible through the
7
demonstration project.
8
‘‘(C) APPLICATIONS.—
9
‘‘(i) IN GENERAL.—A State seeking to
10
be selected for purposes of this paragraph
11
shall submit to the Secretary, at such time
12
and in such form and manner as the Sec-
13
retary requires, an application that in-
14
cludes such information as the Secretary
15
may require, in addition to the following:
16
‘‘(I) A proposed process for car-
17
rying out the activities described in
18
paragraph (2).
19
‘‘(II) A review of reimbursement
20
methodologies and other policies re-
21
lated to sickle cell disease treatment
22
under the State plan (or waiver of
23
such plan) that may create barriers to
24
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increasing the number of providers de-
1
livering such services.
2
‘‘(III) The development of a plan,
3
taking into account activities carried
4
out under paragraph (3)(C)(ii), that
5
will result in long-term and sustain-
6
able provider networks under the
7
State plan (or waiver of such plan) for
8
sickle cell disease.
9
‘‘(IV) A proposed process for re-
10
porting
the
information
required
11
under paragraph (6)(A).
12
‘‘(V) The expected financial im-
13
pact of the demonstration project
14
under this subsection on the State.
15
‘‘(VI) A description of all funding
16
sources available to the State to pro-
17
vide treatment for sickle cell disease
18
under the State plan (or waiver of
19
such plan) in the State.
20
‘‘(VII) A preliminary plan for
21
how the State will sustain any in-
22
crease in the capacity of providers to
23
deliver treatment for sickle cell dis-
24
ease and the complications of sickle
25
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cell disease resulting from the dem-
1
onstration project under this sub-
2
section after the termination of such
3
demonstration project.
4
‘‘(VIII) A description of how the
5
State will coordinate the goals of the
6
demonstration project with any waiver
7
granted (or submitted by the State
8
and pending) pursuant to section
9
1115 for the delivery of services to
10
treat
[Text truncated for display. Full text available on Congress.gov.]