[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[S. 904 Introduced in Senate (IS)]
<DOC>
118th CONGRESS
1st Session
S. 904
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 21, 2023
Mr. Booker 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 Representatives 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''.
SEC. 2. MEDICAID DEMONSTRATION PROJECT TO IMPROVE OUTPATIENT CLINICAL
CARE FOR INDIVIDUALS 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 Outpatient 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 implement this subsection, not later than the date
that is 1 year after the date of the enactment of this
subsection, the Secretary shall, in consultation, as
appropriate, with the Administrator of the Health Resources 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 (referred to in this subsection as the `demonstration
project') for the purpose described in paragraph (2) under
which the Secretary shall--
``(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 services 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 augmentation of
multi-disciplinary care teams that include the
physicians needed to adequately treat an individual for
sickle cell disease and its complications, as
determined by the Secretary in consultation with the
appropriate stakeholders, including organizations
representing sickle cell disease patients,
hematologists, and other specialists in sickle cell
disease care and treatment.
``(B) Conducting an assessment of the barriers to
care experienced by individuals with sickle cell
disease enrolled under the State plan (or waiver of
such plan), taking into account social, demographic,
and economic factors, geography, provider shortages,
and other issues contributing to health inequities, as
determined by the Secretary in consultation with
relevant stakeholders, including organizations
representing sickle cell disease patients,
hematologists, and other specialists in sickle cell
disease care and treatment.
``(C) Identifying best practices for improving
health equity for individuals with sickle cell disease
enrolled under the State plan (or waiver of such plan)
which take into account the results of the assessment
described in subparagraph (B), and communicating such
best practices through the provision of education,
training, and technical assistance to providers
participating under the State plan (or waiver of such
plan), including to care teams described in
subparagraph (A).
``(D) Expanding expertise of providers
participating under the State plan (or waiver of such
plan) on care for sickle cell disease by disseminating
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 patients
enrolled under the State plan (or waiver of such plan)
are getting primary and preventive services in an
appropriate outpatient setting or through telehealth
services, as appropriate, including by providing
additional reimbursement for care coordinators,
community health workers, and other non-traditional
service providers.
``(F) Developing an individualized, comprehensive,
patient-centered care plan for individuals with sickle
cell disease that accommodates patient preferences in a
culturally and linguistically appropriate manner.
``(G) Ensuring that sickle cell disease patients
enrolled under the State plan (or waiver of such plan)
are provided with coordination of, and access to, the
following services, as determined to be clinically
appropriate:
``(i) Treatments and medications, including
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 subspecialists
such as obstetricians and gynecologists,
reproductive health specialists, urologists,
ophthalmologists, neurologists, nephrologists,
psychologists, orthopedists, cardiologists, and
pulmonologists.
``(v) Supportive clinical services,
including vision and dental care.
``(vi) Mental health services and substance
use disorder treatment.
``(vii) Transportation to medical services
and social support services and referrals to
community-based organizations.
``(viii) Any other therapies approved by
the Food and Drug Administration for the
treatment of sickle cell disease or its
complications.
``(ix) Any other services deemed
appropriate 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
representing sickle cell disease patients,
hematologists, and other specialists in sickle cell
disease care and treatment.
``(3) Planning grants.--
``(A) In general.--The Secretary shall award
planning grants to at least 10 States selected in
accordance with subparagraph (B) for purposes of
preparing an application described in paragraph (4)(C)
and carrying out the activities described in
subparagraph (C).
``(B) Selection.--In selecting States for purposes
of this paragraph, the Secretary shall--
``(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
surveillance data collection program of the
Centers for Disease Control and Prevention or
precursors to such program; and
``(iii) select States in a manner to
recognize 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 assessment
of the treatment needs and gaps in care in the
State for individuals with sickle cell disease
in order to improve the network of providers
that treat this population, 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.
``(II) Information on the capacity
of providers with the knowledge needed
to treat sickle cell disease and the
complications of sickle cell disease,
including information on providers who
provide such services and their
participation 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),
including information based on the
assessments described in subclauses (I)
and (II).
``(ii) Activities that, taking into account
the results of the assessment described in
clause (i), support the development of State
infrastructure to recruit prospective providers
and provide training and technical assistance
to providers with respect to treatment of
sickle cell disease under the State plan (or a
waiver of such plan).
``(D) Funding.--For the purpose of making grants
under this paragraph, there is appropriated to the
Secretary, out of any funds in the Treasury not
otherwise appropriated, $25,000,000, to remain
available until expended.
``(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 payments 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
planning grant under paragraph (3) and have
successfully completed the activities described
in subparagraph (C) of such paragraph;
``(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
consistent 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 Secretary requires,
an application that includes such information
as the Secretary may require, in addition to
the following:
``(I) A proposed process for
carrying out the activities described
in paragraph (2).
``(II) A review of reimbursement
methodologies and other policies
related to sickle cell disease
treatment under the State plan (or
waiver of such plan) that may create
barriers to increasing the number of
providers delivering 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
sustainable provider networks under the
State plan (or waiver of such plan) for
sickle cell disease.
``(IV) A proposed process for
reporting the information required
under paragraph (6)(A).
``(V) The expected financial impact
of the demonstration project under this
subsection on the State.
``(VI) A description of all funding
sources available to the State to
provide 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 increase in
the capacity of providers to deliver
treatment for sickle cell disease and
the complications of sickle cell
disease resulting from the
demonstration project under this
subsection 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, including
Medicaid managed care plans, hematologists and
other sickle cell disease specialists, and
Medicaid beneficiaries and sickle cell disease
advocates, and include in such application a
description of such consultation.
``(5) Payments.--
``(A) Enhanced fmap for sickle cell disease
treatment.--Notwithstanding section 1905(b), for each
quarter occurring during the period for which the
demonstration project is conducted (after the first 18
months of such period), the Federal medical assistance
percentage 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 conducted
(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 management and care
coordination services to an individual with
sickle cell disease who is eligible 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 applicable 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-disciplinary 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 methodology shall not be limited to a per-
member-per-month basis and may provide (as
proposed 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 period of the
demonstration project under this subsection, submit to
the Secretary a quarterly report, with respect to
expenditures for treatment of sickle cell disease and
complications of sickle cell disease for which payment
is made to the State under this subsection, on the
following:
``(i) The specific activities with respect
to which payment under this subsection was
provided.
``(ii) The number of individuals enrolled
under the State plan (or a waiver of such plan)
who received treatment for sickle cell disease
or complications related to sickle cell disease
under the demonstration project compared to the
estimated number of such individuals who would
have otherwise received such services in the
absence of such demonstration project.
``(iii) The number of individuals enrolled
under the State plan (or waiver of such plan)
who received treatment for sickle cell disease
or complications related to sickle cell disease
under the demonstration project who utilized
the services beyond clinical sickle cell
disease services, including 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, and
reductions in the total cost of care compared
to these metrics before the demonstration
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 Administration,
shall submit to Congress an initial report on--
``(I) the States awarded planning
grants under paragraph (3);
``(II) the criteria used in such
selection; 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 shall, submit
to Congress an interim report--
``(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
subparagraph (C) of such paragraph;
``(III) with a description of the
strengths and limitations of such
demonstration project; and
``(IV) with a plan for the
sustainability 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
demonstration project under this
subsection after the submission of such
interim report; and
``(III) evaluating such
demonstration project.
``(C) Report on experiences of states.--Not later
than 3 years after the date of the enactment of this
subsection, the Administrator of the Centers for
Medicare & Medicaid Services, in consultation with the
Director of the Agency for Healthcare Research and
Quality, 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 collaboration with States selected under
paragraph (4), facilitate 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.
``(8) CMS funding.--There is appropriated, out of any funds
in the Treasury not otherwise appropriated, $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.''.
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