Sickle Cell Disease Comprehensive Care Act
Bill: S.3389 | Sponsor: Sen. Booker, Cory A. (D-NJ)
Policy area: Health

Summary:
Sickle Cell Disease Comprehensive Care Act
This bill establishes and provides funds for a demonstration project for state Medicaid programs to improve outpatient care for individuals with sickle cell disease, with a focus on young adults and pregnant women.
The Centers for Medicare & Medicaid Services must award planning grants to at least 10 states and must select between 5 and 10 states to participate in the project. Participating states must provide specified services and support for individuals with sickle cell disease, including multidisciplinary care teams, appropriate treatments, mental health services, and specialist services.
The bill provides a 100% Federal Medical Assistance Percentage (i.e., federal matching rate) for services provided through the project.

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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