Sickle Cell Disease Comprehensive Care Act

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- 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 VerDate Sep 11 2014 01:47 Apr 04, 2023 Jkt 039200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H1672.IH H1672 kjohnson on DSK79L0C42PROD with BILLS 2 •HR 1672 IH 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 VerDate Sep 11 2014 01:47 Apr 04, 2023 Jkt 039200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H1672.IH H1672 kjohnson on DSK79L0C42PROD with BILLS 3 •HR 1672 IH ‘‘(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 VerDate Sep 11 2014 01:47 Apr 04, 2023 Jkt 039200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H1672.IH H1672 kjohnson on DSK79L0C42PROD with BILLS 4 •HR 1672 IH 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 VerDate Sep 11 2014 01:47 Apr 04, 2023 Jkt 039200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H1672.IH H1672 kjohnson on DSK79L0C42PROD with BILLS 5 •HR 1672 IH 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 VerDate Sep 11 2014 01:47 Apr 04, 2023 Jkt 039200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H1672.IH H1672 kjohnson on DSK79L0C42PROD with BILLS 6 •HR 1672 IH 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 VerDate Sep 11 2014 01:47 Apr 04, 2023 Jkt 039200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H1672.IH H1672 kjohnson on DSK79L0C42PROD with BILLS 7 •HR 1672 IH 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 VerDate Sep 11 2014 01:47 Apr 04, 2023 Jkt 039200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H1672.IH H1672 kjohnson on DSK79L0C42PROD with BILLS 8 •HR 1672 IH ‘‘(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 VerDate Sep 11 2014 01:47 Apr 04, 2023 Jkt 039200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H1672.IH H1672 kjohnson on DSK79L0C42PROD with BILLS 9 •HR 1672 IH ‘‘(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 VerDate Sep 11 2014 01:47 Apr 04, 2023 Jkt 039200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H1672.IH H1672 kjohnson on DSK79L0C42PROD with BILLS 10 •HR 1672 IH ‘‘(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 VerDate Sep 11 2014 01:47 Apr 04, 2023 Jkt 039200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\H1672.IH H1672 kjohnson on DSK79L0C42PROD with BILLS 11 •HR 1672 IH ‘‘(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 VerDate Sep 11 2014 01:47 Apr 04, 2023 Jkt 039200 PO 00000 Frm 00011 Fmt 6652 Sfmt 6201 E:\BILLS\H1672.IH H1672 kjohnson on DSK79L0C42PROD with BILLS 12 •HR 1672 IH 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 VerDate Sep 11 2014 01:47 Apr 04, 2023 Jkt 039200 PO 00000 Frm 00012 Fmt 6652 Sfmt 6201 E:\BILLS\H1672.IH H1672 kjohnson on DSK79L0C42PROD with BILLS 13 •HR 1672 IH 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 [Text truncated for display. 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